06/24/09
Hi Everyone, Amanda is doing really well. She continues to remain in remission (Praise God!) and all of her lab numbers look really good. We continue to have to stay on her about continuing to keep up on her drinking, but it feels like having to remind her to make her bed. It is easy to forget how far we have come. Her Growth Hormone shots continue to be helping. She is still petite, but is seeing it's advantantages as she gets older. She is 5'2" and weighs 103 lbs and is getting ready to celebrate her 15th birthday. She is beautiful, smart, vibrant and full of life. She is off this week having a much anticipated fun week at the Painted Turtle Camp, for kids with kidney disease. She starts getting excited about a week after camp is over, for the following year. It has been a wonderful experience for her and her 3rd year attending. She keeps in touch with the same kids that she goes with each summer, all year long. She gets to see many of them at the Renal Support Network Prom that she attends each year. Her illness has "sucked" in Amanda's words, but there have been so many wonderful people who have given so much to easing a little of all of these kids' pain, in supporting these events. I feel so blessed that Amanda is getting to live a life right now, that is absent all the pain and hardship she has endured for the better half of her life. I know that God will continue to provide for us, no matter what life holds for us. Thank you to all the people that have loved, prayed and cared for us and our family. Tracey

05/20/09
Amanda is doing very well, for the most part. We did have to do labs this morning STAT, because Amanda is in mild kidney failure because she hasn't been drinking enough. It is difficult in that my time time and attention is focused on everyone in the house, and I want Amanda to take responsibility for some of her care. However, I still have to keep saying, "Are you drinking?! Go get a bottle of water!" Even with that there is a battle. We saw Dr. Yorgin yesterday, we see him monthly now, and despite Amanda's lack of drinking throwing all of her labs off, she looks really good and has continued to grow. He says he will be suprised if she gets much taller than 5'4". She has accepted and likes being "petite." Dr. Yorgin wasn't happy to see how tan Amanda is. Apparently, she has been taking Dark Suntanning oil to school with her "and catching some rays." He reminded her and me that she has a much greater risk of cancer, including skin cancer and needs to wear sunblock when she is out. Good advice for us all. Amanda likes school, but being the social butterfly that she is, she has struggled in catching up with her studies. I will be home-schooling her and Shawna next year, and integrating Jessica later on in the year. Most think I am crazy, but I do not like things that are being taught and encouraged in the public school, or the things the girls are being exposed to. I tried to go back to Nursing School, and I loved it, while I was doing it. However, I never had time to study or focus on my school studies outside of the classroom. One of the kids would cut a finger at school, and I would have to take them with me on the way to my class. Then Sean had to go to the ER the morning of my test, and there are no make-ups, short story gone long- it is not the time in my life to focus on me when everyone else has so many needs. So...I am focusing my energy on homeschooling and catching Amanda up. Jacob comes next week for the summer, and everyone is very excited for him to be here. I send out lots of love from all of us. It is such a blessing to have Amanda in remission and doing as well as she is. I believed God would make her well, but couldn't see the light at the end of the tunnel. Sometimes, we get so complacent, we forget that we are now living in that light. Don't forget to give thanks for what you have and where you are today. Tracey

03/23/09
Dear Friends and Family, I am sorry for not updating in so long! A friend emailed me and pointed that out. Amanda is doing well. She looks good and continues to grow. She is 5'1" and weighs 100lbs. Her color is good and she has a lot of energy. We continue to monitor her very carefully, but she doesn't need to be seen by the doctor as oftenas before. It's hard to believe she is 14 1/2?! She is definitely experiencing teenage angst, but I am glad she is here to deal with it. She still has some medical glitches, but we are looking at trying Glactose, which is a milk/sugar product that is organic. There have been some good results with. We know it is likely she will continue to battle the FSGS and are in search of something that isn't toxic to her system in the long run. Sometimes the side effects of a drug create problems as significant as the tolls of a disease. On a good note, Amanda, Jessica and I were able to take a couple of days this last week and go visit my folks in Carson City. They met up with a childhood friend, that they grew up with. He was no longer a little kid with a runny nose. He has grown up to be a nice young man, and the change wasn't lost on the girls. It was a much needed relaxing weekend with my family. We felt very blessed! Anyway...Amanda is doing really well! Thank you for your continued prayers. We hope to update soon, with some pictures of the kidney prom and other stuff when we figure it out! Love, Tracey

To All,
Okay, I should be the first person to say "don't believe everything you hear in a hospital- even if it is coming from a nurse." Retuximab is not chemotherapy. Like many drugs that are used to treat cancer patients, that are not chemotherapy, they all get lumped in together. Amanda is doing fairly well. We are still waiting for the Retuximab "to do it's stuff." On a great note, Amanda and her sisters were able to go to the renal prom in Sherman Oaks last weekend, put on by the Renal Support Network. Amanda was able to see her friends from camp there and meet some actors (and dance with them.)She and Jessie did their "tango thing," and when they weren't dancing with boys who would interupt them, they were pretty consumed with one another. I was very excited that I was able to come along for the ride and watch. I missed seeing my good friend, who was a driver for teens from San Diego, but was able to enjoy watching the girls, glaring at boys who tried to walk around with their arm around Amanda and hang out with a good family friend who brought Jessie. He took some wonderful pictures, but unfortunately I am unable to download them on Amanda's site. The family friend did make the comment that with as much spinning dipping and twirling Amanda and Jess were doing, it was a good thing that they don't "drink" or someone could get hurt. Amanda has started back to public school and is having a real tough time. She just isn't as worldly as the other kids in middle school, and is overwhelmed by the nature of middle school peer pressure. I am grateful Amanda is not like it, but I am also trying to explore other options for her. A lot of change going on in our lives right now, but we are all doing our best to roll with it. All my love to those near and far, and I will update again after Amanda's next clinic appt., to see her progress. Warmly, Tracey

12/27/08
Dear Friends, I hope your Christmas was a safe and peaceful one. Like many of you, we have felt the "crunch" of the economy this year. We have been very blessed by the friends and family that we hav near, and each other. We did get in an ugly little car accident a few days before Christmas, but by the grace of God we have only some sore necks and backs to show for it. Our vehicle wasn't so lucky. Amanda, Shawna and I were the only ones in our car, so the rest of the family was spared. Amanda had to recently undergo more Reutimab infusions because her protein creatine ratio was consistently increasing. I wasn't aware that Retuximab was another form of Chemotherapy, until this last infusion. This is the first infusion she has had since having her chest catheter removed. The I.V needed to be larger, and although she was pretty uncomfortable, Amanda came through like a trooper. We know Retuximab puts Amanda into remission, for several months at a time, but not knowing the long term effects for her, we will continue to seek out alternative treatments. Amanda is getting to return to regular school after several year absence. She is very excited, but scared too. I was never out of school like Amanda has been, and I was afraid of going to middle school too. I am very proud of her, and I know she will be fine. God bless to all this new year, and ask that you keep the most important things in your sight this new year, the simple things... like friends and families and the blessings that have been given to you. Love, Tracey

11/20/08
Dear Friends and Family, I am having a lot of trouble with the site, so I will keep this short and hope it isn't deleted too. Amanda is in fair condition, but starting to decline. No Alports in the donor kidney. She has Ringworm because she won't stop picking up the neighbors cat, and she is extremely anemic and will need an iron infusion and possibly a blood transfusion. She is growing some, but "helps" by wearing shoes to make her look "taller." Her protein creatine has jumped up, but before she is given more Retuximab, she is being tested to see if she has any of a number of different viruses. She is anxiously awaiting returning to public school in January, and her Make-a-Wish Disney cruise to the Bahamas (we all are excited!) Overall, things are much better on an average, than thy have ever been since we started all this, 7 yrs ago. Praise God- we accept it as a true and well prayed for blessing! Love to all, Tracey

10/16/08
Hello All, Life has been crazy! No news on what the disease the donor's kidney is carrying, yet. Amanda has had a rough month. She caught a virus two weeks ago, that caused terrible headaches and nausea, along with the temps of 105 and up. When she got out of the hospital a week later, she was still experiencing much of the same symptoms. In the meantime, since Amanda has wanted a rabbit for the last 7 years, she was finally in the position to have one after going into remission. She and her sister, Shawna each got a baby bunny. Of course, Amanda chose the bigger one, who was a lot more active and curious and a bright peach color. Anyway, after having them for a week, Amanda got worse. Her jaw on the left swelled up, with large knots in her lymph glands around her face, she started running high fevers again, had severe migraine pain in her back and just felt as crummy as could be. We had already decided the bunnies had to go after the first week (they are gone thanks to Craigslist,)especially because Amanda's buuny kept escaping and had bit and scratched Amanda. She in fact, got scratched on the neck, on the side where her jaw started swelling. With multiple cultures and labs, along with Infectious Disease involved, it was determined that Amanda has Teralemia(?) a form of "bunny-scratch fever instead of cat-scratch fever." She is on the right antibiotics now. Today, she was so happy that she could close her mouth. The pain in her jaw and the swelling kept her from closing it before or talking very clearly. The doctor told us that Amanda is the first case they have had of this,in the last 10 years. Amanda laughed and asked why she always got to be the lucky one and have the wierd stuff happen to her? Go figure! She will need to stay in the hospital for another week. We are in the process of moving a couple blocks from here, but it is still a pain and over-whelming, within all life is throwing at us for the moment! We have also found ourselves in an ugly custody battle over my step son. We had to bring him home. It is a process and takes a lot of patience from us all. If I could just lose weight by the brain cells I am using, I could be a super model! We are at peace in the midst of the chaos. We have each other, and we are better than okay, and Amanda continues to be in remission from FSGS, Life is good! God Bless to all, Tracey

09/05/08
Dear Loved Ones, I have held off writing for awhile, to share that Amanda is in a complete remission of FSGS now. I guess I was afraid to really believe it or trust it after doing this for so long. My husband pointed out that we should be celebrating and letting the world know that Amanda has been cured. After thinking about it, I agreed. Amanda's disease was never under my control, only God's. My acknowledgment of her remission would not change that. Amanda is in Remission. We praise God for that. What I am about to tell you...does not undo what I have already shared. It has now surfaced that it appears that Amanda's donor kidney, which was a perfect match for her, and an anwered prayer....appears to be caring a different kidney disease. I have heard outrage from the few I have shared this with...and even asked or demanded "HOW?????" myself. It is in the molecular stages and is not something that a donor kidney would be reviewed for. The primary things a donor kidney is looked at for, Amanda's passed with flying colors. It is suspected Alports, but the jury is still out. Alports can be a much less serious disease than what Amanda has already dealt with, but Nephrotic Syndrome does not tend to be as serious as Amanda's experience has been, either. I am deeply saddened as is all my family. WHY? doesn't even seem to matter anymore. It is knowing that there is a purpose in whatever is in store for us...and having faith. I am trying to deal with this, and yet, it is too soon to let Amanda in on any of this. I guess in trying to cope and protect myself throughout all of Amanda's illness, I have spent a lot of time "putting a smile on my face, having a stiff upper lip, and stuffing the rest." It takes a lot of energy to do this, and it all surfaces eventually, anyway. I was afraid the grief would consume me and and that I wouldn't be able to endure it, but somewhere along the way, I unintentionally taught Amanda how to cope the same way. I need to start having the faith that God will see me through all this, as much as I believe He will see Amanda through. Please pray for us. I Know I always ask this, but it is not repetitive. I guess I am sometimes afraid that sharing the realities of what our life is like with Amanda's illness, will become a bore. That people want to hear that things get better or improve or you die. That either way, their lives go on and they expect yours to do the same. It hass not worked that way Amanda. I am afraid at times that people who have cared, have forgotten about us. I know this is a messed up update, I am just really struggling right now...Please pray for me to have the faith, where I fall short of it. Thanks and God Bless, Tracey

08/26/08
Dear Friends and Family, Apologies for not updating in so long. Lots of transitioning going on in the household. I know it sounds bad, but I can't wait until Amanda gets her Make-A- Wish, to just get away from it all. Eventhough, she is now 14, she has never given up on her wish to take a Disney Cruise to the Bahamas. She of all people deserves it, too! It has been an interesting month for her. It did appear that she was not able to maintain a remission and so, she received another dose of Retuximab. However, her protein creatin ratio appeared to drop even before she received the infusion. She had a biopsy as well, during the infusion admission, to determine if the FSGS had had any effects on Amanda's new kidney, if she had Cyclosporine toxicity, and why she is still so anemic and needing to be potassium restricted? The biopsy came back with no toxicity, no evidence of FSGS and with her 6 out of 6 tissue match - no rejection. She is not producing much Aldosterone(sp?) so we continue to restrict the potassium and she is now Medicare has finally approved for her to get Aranesp shots to deal with the anemia. It is nice to only have to give her a shot of the Aranesp 1x wkly instead of Epogen 3x wkly. Her Prednisone has been brought way down, so we have resumed Amanda's Growth Hormone Shots. At 4"10 we feel fortunate that her bone studies show that she still has room to grow. So PRAISE with us, THAT AMANDA IS IN REMISSION!!!!! I always knew that God could, I just wasn'r sure when? I thanked Amanda's doctor for orchestrating the choices made to achieve Amanda's remission -but true to his humble nature, he gave All the credit to God and said that he was just glad that he got to be there to wittness it. I thank God for Dr. Yorgin and utilizing him for this miracle. I hope and Pray that Amanda's experience can help other kids who seem headed down the same path with no light in sight. I know that Amanda may need maintence medical care, but with her chest catheter having been removed - her life is taking a new direction. She still isn't sure what to make of everything. She did not want the catheter removed. She felt like, after 7 years that it was "a part" of her. She is struggling with her identity right now, but I think most 14 year olds do. She is a beautiful kid and I have always felt lucky to be her mom. We have been able to finally consider moving back up North were my family is at, but for now, feel like God hasn't finished with our purpose here, yet. I will try to be more frequent in my up-dating. Thanks to all who have followed us down this path of tragedy and recovery. I know it isn't over with. I also know that in the long run, it has not been about the destiny, but the journey. If you close your eyes- you miss all the blessings. Love, Tracey

07/15/08
Dear Friends, "The village is on fire!," but Amanda is doing great. Her protein creatin ration started to slip up again into the mid 2's, but Amanda was able to go to kidney camp and miss a treatment, anyway. She had a wonderful time and we have had conference phone calls non-stop from the friends she made at camp. It was a great experience for her. She has so little opportunity to make friends, but is such a social creature just the same. It warms my heart to see her lay on her bed and chat on the phone. It seems like yesterday that was me. How did I get here and my name and identity become "Mom?" I feel too young for where I am at in life! Anyway, Amanda got another dose of Retuximab over a longer infusion time and longer stay in the hospital, recently. She had some scary side effects last time with her lungs hemoraging. She is doing great now, her protein creatin ratio is a .4! It is a miracle!. Amanda feels good, but is still, somewhat anemic and getting Epogen shots 3x a week and plasma pheresis 1x weekly. Hopefully, that will stop soon and she can take her Make-Wish Disney Cruise to the Bahamas, yeah! The rest of the house is turned upside down, outside of Amanda. We are looking to move in the next two months. The house we moved into is very old and musty and everything keeps breaking. I tend to run a high fever every couple of days since we moved in. Sean is starting a new job in LA next week, so he will be gone a lot. Jess is headed off to camp and back to school in the next couple of weeks. Jacob has been with us for a little over a month, and has been working and learning with Sean. When I take Jake back to my brother's, Shawna will come home from her mom's and Ryan will be moving to his mom's. He has Reactive Detachment Disorder, and has been creating more damage in the home, than any benfit we could give him. I sometimes wonder if I am such a rebel, that God constantly keeps me hanging by a thread, to remind me who is in charge? We have many blessings, but we are in the midst of a lot of turmoil and tribulation for our family. Amanda being in remission is a true miracle and a blessing that keeps me moving and hopeful for all things. Please keep our family in prayer, and give praise to God for how well Amanda is doing! With love, Tracey

06/11/08
Hi Friends and Family, My first words are "Praise God?" For the foirst time since Amanda was diagnosed with her diseaes, she is in a clinical remission. That means that her kidney function is excellent and her protein creatine ratio is ranging between a .5 and a .7, we have never been lower than a consistent 5.0 to a 6.0 previously. It has been contributed to the drug Retuximab, which which has wiped out Amanda's B Cells. We don't know if the disease shows up more when the B Cells regenerate, but right now, Amanda is doing great. She can eat what she wants, and has plasma pheresis 1x weekly. Wow!!! She was able to return to the Bay Area for the first time since we left, last week for her sister, shawna's check up for her Primary Pulmonary Hypertension. The girls were able to wear formals and attend the hospital school's prom (where we all met to begin with.) They had a wonderful time. Amanda was whirled around the floor by a young man in cowboy boots and a cowboy hat, who called me "Mam." It was heart warming to see Amanda "swoon." She also, was able to return to Nesbit, her old elementary school, to visit with Mrs. Moscovitz (her favorite teacher.) We are getting to do so much that we never have before. We will be attending a family reunion in a couple of weeks, then Amanda will be off to Kidney Summer Camp, for a week in she continues to do well. She is still very anemic and may need another blood transfusion soon, and has had some major arthritic pain from residual high antibiotics that she received when she was Septic. The summer is kind of quiet for now, I have just Amanda and my son, Ryan to take care of. Jess comes home next week for the summer, and thenb I have Jacob for a month, too. God is good. Please thank him and praise him for Amanda doing so well and faith and prayers that she continue to remain in remission. We thank you fro the prayers for all of our children. We are starting to obtain help for some of the other kids with special needs and are being able to count our blessings along the way. God Bless, Tracey

05/13/08
Hi Everyone, My entries or the frequency of them based on Amanda's hospitalization would almost seem comical if they were not so the opposite. Amanda went back into the hospital last Thursday with 106. temp. After spending 13 hours in the ER, they got her a bed. It turned out that she was Septic and has grown an additional bacteria since being admitted. The good thing is that with the immediate dose of antibiotics upon entering the hospital, she was feeling pretty good by the next day. She is continuing with the additional meds to fight the new "Bug" that has appeared, but will be discharged Friday for me to continue her infusions at home for the next week. The rest of the family is planning a weekend away that was scheduled with friends 6 months ago. I am looking forward to the quiet time with Amanda, and have promised myself that I won't spend the weekend cleaning, trying to play catch up while the others are gone. I am glad the Shawna Jaon and Ryan get to go this year. Last year they were at their moms. Jess is trying to finish up her on line school while staying with some friends. It has started getting really hot here again, so we will keep it simple and stay cool. I hope all of you are taking the time to take care of yourselves and be good to yourselves, too. All my love and appreciation of your prayers! God Bless, Tracey

4/30/08
Hi Everyone, Amanda is doing well. She is finally off dialysis and back to plasma pheresis 3x a week. She has very poor muscle strength, but it does not slow her down one bit (well maybe a little.). she is growing up. It is hard for her that her disease has taken such a toll on her body, and that she is not developing like her sisters. She is still quite beautiful. People stop me and ask if she is a model or tell me that she should be. This makes her feel on top of the world, and not resent how thin and small she is. God is good, and has pulled us all through another crisis again. The family is doing well. We are making adjustments and starting to get help for the other kids in the home that need it too. Jess has gone to stay with family friends. She is getting a lot of help with an on-line home school and is absorbing information like a sponge. She is very homesick, and we miss her desparately, too. I am looking forward to spending time with her this weekend. However, it has been a blessing and time that she gets her needs met too. God really has taken care of us. Not neccessarily the path I would have chosen, but then again, I am not God (LOL, thank God for that!) All my love to you and your families. Please continue to keep our family in prayer, and the family of Dr. Yorgin. He really is a gift from God! I have never questioned or doubted whether following him from the Bay Area, was the right decision. God Bless, Tracey

04/13/08
Thre have been 2 more admissions since my last entry, for Amanda. She gets out one day and goes in the next. This last admission (all through the ER,) has been the hardest. No exact reasons why, but suspicions only. Amanda recieved a shot in the arm right before she was discharged last Friday, to increase her white blood cell count, which was very low. By Saturday night she was interrible bone pain that started in her neck and head, spreading throughout her whole body. I have never seen her so close to passing out from pain before. She was given several doses of Morephine before she started to find any relief. By morning she was running a high fever and on a 100% Oxygen, and had come down with Phneumonia. Then the following day she stated coughing up blood and went into kidney failure. Her blood pressure got so high that she was monitored for seizures because she had become so lethargic. Her lungs are working again properly, but her blood pressure continues to be a battle with her heart rate dropping so low. She has been receiving dialysis daily and is very "puffy." She is feeling more like herself after spending a week in ICU. Later today she will be moving to "Step down" which is a unit that is less critical than ICU. These last three weeks have been wearing on the whole family. We appreciate all the prayer that has been going out for Amanda. Tracey

03/30/08
03/30/08 Dear Friends and Family, It has been a long last couple of days. I had almost forgotten what it was like to spend days in a dark room with monitors and pumps constantly ringing and buzzing and chirping! I took Amanda into the ER on Thursday night, actually it was Friday morning at 1AM. Her blood pressure had continued to worsen every hour even though, she was getting more B/P meds every hour. When the blood pressures reach over 205/140, I had had enough. I have been through seizures in the past with Amanda, from high blood pressure. I knew that we were in heart attack or stroke territory. The whole thing stinks to high heaven, because it could have been avoided 2 weeks ago. Medicare refused to fill a certain medication, that had dual purposes for Amanda (one including blood pressure control.) They would not approve it because it was not formulary (standard used med.) I went round and round with them as did the renal office here. Finally, after a nurse sending them a 27 page fax with explanations as to why no other medication, but the one prescibed, was acceptable for Amanda, did Medicare conceed. However, this was after Amanda's conditioned all the way around, has worsened. Now after being in ICU for three days, Amanda's pressures have been controlled. Unfortunately, she is now enduring abdominal and kidney pain, that has only been lessened by Morephine. Last night they tried to give her Dialudid, which she is allergic to. I tried to asked tactfully, what would have happened if I had not been there to stop them? I was told that ultimately, a pharmicist knows the allergies and would have stopped the process. Unfortunately, I have witnessed differently. I really feel for parents who can not be with their kids in the hospital. It is at those moments when you can tell the medical staff "NO," on behalf of your child that make a world of difference in your child's life. A child would not have that ability to take such a stand. One day, I hope that in some way, I can provide advocacy for parents, especially those who are single with kids, and help them get the best care for their ill child, and still provide care for their other children. It is one place at this hospital that has not been addressed. I am fortuante that a wonderful family that is best friends with my family had just taken Jess the day before, to spend the weekend with them. She really deserves the extra attention, they took her whale watching and bought her all her favorite food (so she says, LoL.) God is here, even though at times, I feel passed by? Even though, it is hard, there has always been a blessing to be found. I have come to learn that if I get caught up in feeling sorry for all the strife in my life, I miss the blessing that comes with it. There may be someone you know who has a child who is sick or dying. I know I am always afraid of saying the wrong thing. Believe me, I have experienced well meaning people say the most insensitive things you can imagine. However, don't turn away from those parents, in fear. It is all those people who were there for me,even if they never heard from me, that meant so much. They were the patch that kept my sinking boat, afloat. Praise God today, for all that you have. Forget about the "stuff," and celebrate the people in your life. Remeber to pray for Amanda. She can't see her life objectively. She still has trouble experiencing God, but He still has her in His hand. All my appreciation to everyone who has not given up on me, my family, or our plight.

03/20/08
Sorry Everyone, sometimes life seems too be moving to fast for me and I feel like I am floating through it. I have trouble remembering if I actually did something or just thought about it. All my children seem to have so many medical and other needs right now. To Amanda, she is doing well. We still fight her anemia. we where able to get the plasma from Jess approved and done. That was a circus event in itself! I knew Jess was absolutely terrified of needles and but willing, and very scared about what would be happening to her, so I gave her a small dose of Ativan to sedate her a little and make her feel more relaxed. Just like Amanda's reaction to the drug, Jess had the oppsite reaction, too. She became absolutely hyper and as squirrley as all can be. She wouldn't stop laughing and telling jokes. I am sure she would have broke out into a song and dance if anyone would have suggested it. The Blood Center was very graceous and kind. Jessica is much younger than their usual donor. They let Amanda stay with her, while they pheresed her plasma, to give Jess moral support. So, Amanda will recieve the plasma Friday. It would have been sooner, but I keep getting sick, and Amanda keeps catching it from me. So, we have had to delay the process a little. We did find out that because Jess weighs 115 lbs., she can donate up to 600ml 1x monthly. Before we understood that it was a one time deal at 200ml. There is no way to tell if this will work or how. We have nothing to go on, other than the girls are identical and that Jess carries the Savin Factor, too. If after a month we dont see any change of 1.5 deviation or more in Amanda's protein Creatine ratio, we will be moving forward to the Retuximab infusions. If we do see a response, we will continue to give Amanda, Jess' plasma monthly. It is a shot in the dark, but we are running out of bullets. The rest of the family is good. Other kids have been in and out of the hospital, I am getting ready to home school Jess and most exciting is that we have heard that after 6 years of waiting, Amanda may get to go on her Make-a-Wish on a Disney Cruise. She has never been well enough to be off plasma pheresis for any length of time. It has been suggested that the possibility of taking a nurse and plasma pheresis machine may be an option. It may not work, but it has been very exciting for the family and especially Amanda, to think of the possibilities. It opens up the very real door of hope that things are going to get better. I apologize to all of you who have emailed me or called and not gotten a response. Sometimes all I can manage is to take care of my kids and husband and hope to get a good night's sleep. I really do care and appreciate your love and concern. We are doing okay, just seems busier right now that usual. Please keep us all in your prayers. God already knows what the specifics are. Thank you and God Bless, Tracey Paul (Amanda's mom)

01/31/08
Hi Everyone. Amanda is feeling better. I attended a confrence last night with doctors from other hospitals, specializing in Nephrology. We were there to discuss the nightmare of FSGS in Amanda's life, that just won't go away. Dr. Yorgin presented an excellent presentation on Amanda's history of her illness. At times, I caught myself holding my breath. It was like listening to a diary entry covering the last 6 years of our lives. There was a lot of good input from the other doctors on different therapys. I think the next course of action for Amanda is for her to start Retuximab, this was pretty myuch agreed on by everyone in the room. However, everyone was still very intrigued about Amanda having an identical twin who has the disease in her blood, but who has no symptoms. We are going to infuse Amanda's blood with Jessica's plasma, in hopes that Jess is carrying a blocker to the disease in her blood. There is nothing to lose at this point. Please keep the prayers coming, you can never no how mych power they have had in carrying us through. God Bless, Tracey

01/19/08
Labs came back. Results unfortunately, were as expected. Dr. Yorgin will perform Amanda's kidney biopsy on Monday. She will also, start receiving Fresh Fozen Plasma during plama pheresis for now on. She is extremely anemic and pale. If she doesn't stop losing weight and start gaining, she will end up on an NG tube again (to provide high calorie supplements.) We are hanging in there. We appreciate all the on-going prayer. God Bless, Tracey

01/16/08
I stall as I start to write this email update. Amanda's kidney has woken up. In fact, she is borderline, producing too much urine. The part that that makes me catch my breath is that there is some evidence that the FSGS is back. As Amanda's kidney function increases, so has the amount of protein in her urine. There is still the possibility that the lab numbers could be a result of something else, it is still disheartening. We will have more information on Thursday. If the results still appear the same, they will biopsy Amanda on Friday. They will then determine what is actually happening and the course of action we will be taking. Because the kidney is awake, Amanda was taken off dialysis completely. I shouldn't have been suprised, but she cried. The families, nurses and kids on the dialysis unit have become her best friends and family. She was sad to be leaving them. I layed in bed last night holding Amanda, praying to God about how to discuss this with her and if I should are not. With this all not being hard enough, Shawna, Amanda's step sister is having problems with her pump that regulates her heart and lung issues. There is a whole lot of red tape and blah blah blah, but her insurance changed out of the blue. As well as she has been collapsing and becoming out of breath for no reason. Stanford is concerned she has a blood clot in her central line. It is hard to figure out who is going with which kid, and who will mange the other kid and all the others too. I need to be here right now for the biopsy, if that is the direction we will be going. It helps, I guess because Sean has been laid off, and it allows us both to do what needs to be done with both girls. I will still continue to trust that God has us in His hands. At those times that I cannot breath, I trust that we are being carried in His hands, not our own. God Bless to all, and pray without ceasing that it would be God's will for Amanda to be out of the clutches of this disease and all that it entails. Tracey

01/10/08
Dear Family, It seems that Amanda's kidney is starting to wake up. She is producing more urine. The doctor has decreased her dialysis from 4 days a week to 2 days a week. I am not minimizing this at all. In fact I burst into tears when dialyis told us of the change Dr. Yorgin was making. We are still waiting for the kidney function to pick up more, so we can start focusing on where she is at with the FSGS Disease, and how often she will need to continue to be plasma pheresed. We are happy, but it is still a wait and see type of thing. I want to take the "yippee," a little slower than last time. It is a long way to fall when you reach that high. Experience has told us to wait on God. Thank you to all of you who keep Amanda in your continued prayers. Love, Tracey

01/05/08
Dear Friends and Family, I am sorry I haven't updated Amanda's site. Yes, she is okay. No, the kidney still isn't working. We can't even determine if we have over-come the disease until the kidney works. Dr. Yorgin is sure this is going to happen, that it is just a matter of time. If the kidney is not producing more urine by the 10th of this month, Amanda will need a biopsy. The good news is that the clot next to her heart has gotten a little smaller. We will take all the good news we can get. I want to thank everyone who has prayed for Amanda and our family, and all the Fox-Steele Family who sent all the wonderful cards to Amanda. Also, the current transplant families that came to see her in the hospital and all of our church friends who came to see Amanda, took in Jess when we needed and provided our family with meals this last week, we are greatly appreciative! I am adjusting to the increase of appointments and medications for her (and the constant adjusting of doses.) The other kids are coming home from Christmas at their other moms, so life will get a little bit busier. I am thankful everything worked out timewise, that it did. Amanda's Prednisone has come down some, so hopefully she will be able to get off the emotional rollar coaster that steroids creates. Other than that, as it has always been...., a waiting game. I am still hopeful. I have learned that there has been no case of Recurrent FSGS (Amanda's disease) at Loma Linda Children's Hospital, since Amanda's doctor, Dr, Yorgin arrived here and implemented the current protocol for pre and post transplant care. I know all things work together for good, and I hope I have done my part, but I am now ready for Amanda to be well and move on. However, I have always wanted and been ready for that. In His time. God is good....ALWAYS, Love, Tracey

12/23/07
Dear People? Yesterday was a hard one for me. I gave it all to God, but the grief, despair and worry got the better of me. I was a meltdown of tears all day. Things looked grim and Amanda appeared to be in crisis. The potassium and fluid shot up, no urine out put from kidney yet, fluid in the lungs, and high fevers. They stopped pheresing as cautionary, which gives the disease more leverage for returning. They were sure she had Phnemonia or another source of infection, maybe originating from the clot near her heart. Amanda was gray and in a lot of pain. Today the surgeon felt like the fevers were a result of Thymoglobin(sp?) that she was being given as a treatment for the immunosuppression. He still feels like the kidney is going to wake up. They will continue dialyizing, pheresing, giving her Vancomyecin & Clindomyecin infusions, along with IVIG and Thymglobin infusions everyday. Amanda has more color today, but still needed a blood transfusion because her hemoglobin is low. I think she is feeling better, because she is much more expressive about her pain and irritation at all the wires, tubes and A-line stitched into the artery at her wrist. Fortunately, we got the A-line removed this evening, and I was able to bathe her, and take her for a walk. I finally asked her nurse if there was a problem, that she had with Amanda, and she told me that Amanda complains too much. I let her know I could understand how she would feel that way, and I would talk to her, but if the nurse had gone through 2 transplants and everything else Amanda has, she would probably be cranky and irritable too. I tried to be gentle. But I reminded her that she worked in the ICU of a children's hospital and I was pretty sure that having some compassion and gentleness was part of her job as a nurse in that capacity. I know I am over-protective, but there is no reason to be hateful to a child who is already miserable. I guess I have just come to feel that in these situations, either the nurse can make me aware of something that I wasn't already aware of, and acknowledge that there is a problem, or even if they act like they don't know what I am talking about, their attitude and disposition improves. 98% of our nurses are good, the other 2% just forgot that they are working with children. Anyway, Amanda looks better, and we are still positive about this kidney waking up and doing its job. I am hanging in there. I still tend to be a recluse when things are hard, but fortunately, my husband let our church and friends know. They have been very supportive. We know there are an enormous amount of people out there praying for Amanda, and God hears our prayers. God Bless to all of you and we ask that you keep it up. He is good...Always. Love, Tracey

12/22/2007
Dear Everyone, It has veen a long couple of dys or nights. They have blended into one another. Wednesday night we got the call that they may have a kidney for Amanda. We were put on stand-by for more imformation to come. As the the next several hours passed (and days) we learned that there was a kidney that was a perfect 6 out of 6 tissue match, available for Amanda. The timing was perfect because we had just moved up Sean's kids going to stay with their other mom for Christmas, and she was there to get them. After a lot of waiting (the rain delayed the kidney coming from LAX airport.) We finally started transplant Thursday night at about 11:30 pm. Friday morning they let us finally come and see her about 6am. She is in a lot of pain. The kidney came from Deleware, and where they like to have it in in 6 hours, this one went in after about 23 hours. We are still hopeful and praying. As of right now the kidney is "asleep." It is producing very little urine, and as a result. Amanda's fluid retention and potassium levels were climbing yesterday. They will pherese her everday to fight off the FSGS, and had to dialyze her to bring the potassium down. There is a lot of debate between the docotors as to what direction to take. I have requested a protein creatin ratio on the urine that has been collected and for them to run a Savin factor test. I am anxious to know her concentration levels. We have had friends from the church want to come visit, but Amanda is not up to it, and is very immunosuppressed. The protocol of this hospital is hard. They won't let me stay the night with her, but I can come watch her sleep during the day day. That make her happier, and is about the only thing we can do for her, besides pray. Sean and I took her an I Love Lucy dvd set which made her happy. I know it hurts to laugh, but still seems like the best medicine. We are still hope that this kidney will wake up, and be all that Amanda needs it to be. Thank you so much for all the phone calls. Please just pray for Amanda right now that her kidney will begin to work. We give all our prayers to God, and thak him that His love is alway enough. Tracey

12/12/07
Dear Friends and Family, It is becoming a very long wait for Amanda to get a kidney. I know she is impatient to get on with the kind of life she has wanted and been denied, since becoming ill. On the other hand, she is fearful of repeating the same kind of pain she had with her previous kidney transplant, and having the disease still return. As always, it seems to be easier to have hope and shoot for the best case scenario (remission,) than having failure and no options left. I guess if I were being philosophical (which I am lately,) It is the journey not the destination. Although, I have only experienced the emotional pain with Amanda, not the physical. I think sometimes, it is easy to lose site, when someone has been undergoing the pain or treatment of an illness for a long time, people think you "get use to it." Some people may become more "accepting of" the pain and discomfort, but no one gets use to it, especially not a child. Amanda has not accepted that her illness is her life, if anything; her illness gets in the way of a life she is determined to live. Its conflicted, but I would not change her. What she has experienced and endured does not define her, but empowers her, through her determination to get past it, God willing. Anyway, to things more tangible... I was able to take Amanda, and her sisters, Jessica and Shawna to the National Kidney Foundation Christmas function lat Saturday. It was a nice break away from the boys in our household. The comedian George Lopez and his wife put it on. We were taken from the Loma Linda Hospital by a huge tour bus (with many other families,) to the Downtown L. A. Staples Center. Kwame Brown from the Lakers Basket Ball Team was there. He autographed pictures and handed out toys to the kids. He even got out there and danced with them. I was very impressed at what a down to Earth personable guy he is. I know he has been involved with other Kidney Foundation functions as well. He is very tall! I am tall, so tall does not impress me, but he is VEEERRRY tall! He bent over at the waist to talk to me, and I had to lean my head all the way back to respond. Amanda walked right around his bodyguards, and asked him if he would take a picture with her, her two sisters and Santa Clause. He was very accommodating. It was nice day for the girls and I (and I got free Shampoo, lol.) We are headed into a quiet Christmas this year. We can't leave home, for the hope that they will call Amanda with a kidney available. I was recently, blessed and taken aback. A friend I met a few years ago at the Ronald McDonald House in the Bay Area, Has contacted me and let me know that she is going to be tested as a possible donor for Amanda. She is a parent of a child with medical illness too. She said that she had thought about it for awhile, and would want someone to step forward if it were her child. It blows me away, at the honest to goodness, heart of so many people that I have come across, since Amanda 1st became ill. I guess I stand corrected in what I said in the above. Amanda's illness is part of the journey our lives have taken, and it does define us. But not as defeated. It defines us in that we live in spite of the illness, not to survive it. There are so many people this last year who have lifted me and my family up. This year has been a very difficult one for me... but one that has been full of blessings and hope. I wish the same for all of you. Remember this Christmas, that all things that have become traditional in our society, the tree, star on top, the lights, the gifts.... originate to the gift that has been give, to us...free. Whether you accept the gift, is up to you. But it does still have your name on it. Thank you for all of your prayers and support. Thank you to all of the people who have emailed me and let me know that you purchased Amanda's Butterflies book. It has been greatly appreciated. We want to continue to educate people on the different aspects that a child's illness impacts them and those around them, in a multi-faceted aspect. Special Thanks and appreciation to Jack Kraske, who did a wonderful job illustrating Amanda's Butterflies. Jack is a professional Cartoonist who donated his time and creativity to drawing some special characters for us. The characters of the book are other kids with serious illness that became important people in mine and Amanda's lives. The three legged giraffe was a beloved tall, lanky boy with a big smile and a heart of Gold. His real name was Kelly. He past away this last year after a long battle with bone cancer. He had to have portions of his leg amputated, as his disease progressed. Kelly, lived a lot of life in his 19 years, although much of the last few, he endured a lot of physical pain. Losing Kelly felt like I had lost my own child. It was very hard for me to accept or deal. This book had to be edited a lot. It went in a lot of different directions. But things that are referred lightly to in the book, are very real situations and very real and dear people. The book is not just a tribute to Amanda, but all those kids, that fight or have fought the fight. Well, I apparently had an awful lot to say in this update! Appreciate your life, and that of those around you. Everything else is not so important. God Bless, Tracey

11/03/07
Hi Everyone. Amanda has continued with the same treatment schedule of plasma pheresis and dialysis. However, she is now recieving IVIG every week now instead of every other. Her IGG levels were too low and her immune system needs a little help. The plasma pheresis minimizes the disease in Amanda's blood, but it also removes any immunity she might have and about 60% of her red blood cells. As a result Amanda is very fragile and anemic. She is on very large doses of Epogen and has had to have her growth hormone shots dose doubled, because it is being pulled off with plasma pheresis and has caused Amanda to stop growing. The rest of the family has gone to Modesto for the weekend, but we could not go. They could call Amanda in for transplant any time day or night. It is nice to have some down time with Amanda and Jess, but very difficult to keep Amanda away from me as much as I want to hold her. I am sick and can't seem to get well. I have no voice, and tire very easily as well as having respiratory problems. My worst fear is that I will give it to Amanda, and we will be back in the ER all night. Jess and Amanda are having a good time though, with a little more freedom in the house, with everyone else being gone and the house being empty, and having all of my attention. I hope to get lots of rest and kick this thing once and for all! People have started inquiring as to how to be a kidney donor for Amanda. That would be great if we could find one, becuase then Amanda would not continue to be weakened and at risk with on-going plasma pheresis, jepardizing her immune system and deteriorating her even more, waiting for a deceased donor. The best way to go about it is to contact Loma Linda University Medical Center at (909) 558-4000 and ask for the transplant center. I believe Sherry is the lady in charge of living donors. They ask some questions, send you an application to fill out, then they receive financial clearance (Amanda's insurance pays for the costs of the person donating.) then they do blood work to see if the donor is a match with Amanda. The process is pretty quick. The recuperation time for the donor is minimal. The transplant unit can provide more information. It really is one of the biggest ways you can give of yourself and is a gift of life. Whether some one is a match for Amanda or someone else, it is an incredible thing to do. They also have donor swapping. They sometimes have people who are a not a match but match up with someone else who has a live donor and not a match, but they match the other's donor. It is something to think about, or maybe you know someone else who might be interested. We hope and pray that Amanda's next transplant could and would be the key to her recovery. Keep it in your prayers, and ask around. As always, Love, Tracey

10/01/07
Hi Everyone. Amanda is doing well. She is tolerating her 4x a week dialysis, 2x a week plasma pheresis and her every other week IVIG, well. She looks good, despite her tiny limbs and the grayish color of her hair and skin. The doctor says that will not change until she is transplanted, which could be any time now. She and her sister, Jessica were baptized on Sunday. It has been a day that has been long awaited for many years. The pastor joked that he needed to get it done beofore Amanda drowned. The water came up to her chin, even before she was dipped back into the water. Both girls were glad they could get baptized together. Amanda still has questions, especially surrounding her illness, but we agreed that not only would her baptism symbolize being Born Again, but also, being washed clean from her disease and all the bad feelings associated with it. Amanda is doing well with Home/Hospital School, too. I pulled her out to keep her well for transplant. And we are fortunate enough to have a wonderful teacher and good friend from Amanda's school be her teacher. I take her after school for a couple of hours a few days a week, which gives her more of a feeling of still being in school. I think she is learning quicker too, without all of the social distractions (BOYS!) All in All, I believe Dr. Yorgin is very pleased with how well Amanda is doing, even despite a few ugly viruses she has picked up now and then. We are still hopeful that transplant will turn Amanda's illness around. God is good, and we are trying to keep as normal of lives as possible, whatever that may mean! Keep Amanda in your prayers and an up and coming transplant, too! Love, Tracey

09/24/07
Dear Family and Friends, Amanda is out of the hospital and doing well. All of her cultures came back negative, so it appears to have been another nasty virus.

09/15/07
Hi Everyone, It has been a very long night! I spent it in the ER here at Loma Linda. Amanda came down with 104.8 temperature yesterday. It was accompanied by dizziness, headache, the chills with burning feet and extreme skin soreness. We are so fortunate to have Dr. Yorgin. He met is in the ER, which was packed with some shady looking characters. Fortunately or not, we knew many of the staff in the Children's ER there. They were all running back and forth getting her labs and antibiotics. The only good thing about having a serious illness when you are sick, is that you get that extra special attention and immediate treatment. I wonder who I have become in all this. As I stood in the hall (they were doing a sterile procedure with Amanda's catheter) I looked around at all the crying, or screaming kids I could hear, and mothers and fathers standing in the hallway, crying and looking very frightened. I started crying too, because I felt the pain and grief they were experiencing with something wrong with their child. It then donned on me that my child was probably one of the most fragile and sickest kid in there. That is why they were all running around taking such good and immediate care of her. Why wasn't I crying about my own child anymore? When I started praying for those families and children, I remembered to pray for Amanda too, but I know God has Amanda in his hands, and I trust He will pull her through, like He always had before. It was good to have that calming peace about Amanda. I love her so much..., but I have learned also, to trust in God, in the good and the bad. Once she was situated on the critical care floor, I finally went home. Sean was good enough to bring me dinner and spend some time with Amanda and me. Sean is Amanda's dad now. She wanted him to hold her and kiss her. She just kept telling him how much she loved him. It warmed my heart, especially knowing how bad she felt. When she got to the hspital initially, she was asking the nurses how their day was going, as she was shivering and flushed from burning up. My chiln takes her etiquette to far sometimes. Anyway, I went home at 1am after she finally got put on the Critical Care Unit, and was sleeping. I had to get the other four kids off to school and Sean off to work in the morning. It is nice to sit down and update Amanda's site right now. I think Amanda just needs a couple of days with a tune-up in the hospital and then she will be okay. I know they want to moniter the mass next to her heart. She is a tough cookie. I hope and pray we can move into a different house to rent in the next month or so. Where we are now is way too small, and everything keeps breaking. Sean has been doing all the work, but it has gotten out of control. We need the peace of mind of not living right on top of each other, and finally having a backyard. I am not sure how it is going to work financially, though. I am just praying that if it is meant to be that God will figure it out. He does whether or not I agree anyway. Hope you all are well. Please keep Amanda in your prayers, for a speedy recovery so she can transplant soon, and start living life the way a kid is suppose to. All my love, Tracey

08/25/07
Dear Friends and Family, Forgive me for not finishing emails, lately. I seem to get called away with some kid urgency, and whatever kid I have trying to save my update, well they missed the part on SAVE. Amanda is doing well. She has had a hard GO of it, due to non compliance with abstaining from phosphorus (milk, nuts, bread, cookies, chocolate) and with not taking medication to bind or block the phosphorus. As a result, (long story short) calcium got pulled out of the bone marrow, causing Amanda to have severe bone pain and bone disease. The bone disease is reversible at this point, but another complication to deal with in line of everything else. When Amanda's last dialysis catheter was placed, she had a mass appear next to her heart. It has been a year later, and different treatments later too, and the mass is still there. We received input from the cardiologist, who is putting Amanda on Coumadin. He believes the mass will shrink over time, and hopefully, not get released into the blood stream, or heart. Amanda has started plasma pheresis 2x a week now, in addition to her 4x a week dialysis. Her double days are hard on her. On those days, she sometimes needs to be carried into the house. She does appear to be growing on the growth hormone shots, height wise, but is still so terribly thin and fragile looking. The other kids are doing well. We have Jason back home, as things did not work out at his other mom's house, as we had hoped. He is doing better, )most days.) We are trying to sell my car and buy a larger car that will fit all of us, and the same goes with living space. So we are crowded again, and moving on with day to day life. Amanda has 2 more weeks of plasma pheresis, then moves to the top of the kidney transplant list. She will be able to start receiving offers then, for compatible kidneys. I have hopes that we can rent a house by then, but we will take it from one day to the next. The area we live in is so-so But close to the hospital,) but the middle school is terrible. I really don't want Jess exposed to what she was during summer school there. However, until we have more room, there is no room or space to home school her or do online charter school. Those are the options I am looking into, but I am worried about my time availability to her too, with everyone's Dr. appts. It sounds overwhelming, but it is manageable. Please keep my husband Sean in prayer. His back problems have gotten worse, and both hands keep going numb. He had accupuncture last week, but it did not seem to help. Shawna and I will go to Stanford next week to have her set up with a new ,smaller pump and be seen in the cath lab. She was suppose to have this done last month while staying with her mom, but that did not go as planned either. It is okay, I enjoy the one on one time with Shawna, it is just hard to make arrangements for all the other kids, while I am gone. Life is good, busy but moving forward. I sleep well at night and we all have each other. God bless to all the many people I have heard from lately. You inspire and encourage me. Amanda sends her love. Please pray for her strength and endurance. I know she is afraid of this next transplant. She has not forgotten the physical pain that she endured during her last transplant. She also wants so much to be "normal" and play P.E. and not go to dialysis. She wants to be "cool." Who doesn't? Actually, I don't, but I understand what it means to be 13 yrs. and wanting to be Cool, is very important. She pleases me, that she does not focus so much on what has changed in her physical appearance, it is what she can do with what she has. All 6 of my kids are amazing kids and continue to amaze me on a daily basis (mostly in good ways, LOL,) and make me very proud. We send our love and prayers out to all of you, Tracey

08/20/07
Dear Friends and Family,

7/09/07
Hi Everyone, It has been a wonderful week. Amanda, Jessica and I were able to take an Angel Flight up to Grass Valley to spend 2 days with our family. It is so beautiful there, I start getting excited about the prospect of Amanda getting better, and us moving there. I know I am getting ahead of myself, though, and ahead of God's plan for us. I think we would all be happier. We are blessed, that Sean has found work with a company he has a lot of admiration for. He has more than enough work right now, but is dying working 12-13 hour days in 110 degree heat on a roof. Most days it is all he can do to drag his body home. We pray his hard work will pay off and that we can buy a house in a couple of years. God will reveal that to us when He is ready too. Bad news, and for a short time time devastating news is that my good friend, Anna, is no longer a prospective donor for Amanda. We were never able to even do the blood matching. Anna has a terrible stomache condition. Her doctor told her that surgery for her could be life threatening. This news was pretty hard on Anna, and even harder on Amanda. I think she was able to comprehend that God has someone else in store for her to be a kidney donor. I blieve that there is someone special out there that this would be a blessing to and spiritually uplifting to be giving the gift of life. Whatever God has in store for us, we will wait on Him. A few people asked me a while back about leaving messages on this site, or not being able to leave meassages. That aspect of the site had to be closed due to all the pornography pouring in. Sad, I agree. However, you can leave messages for Amanda or the family through the "info@amandas-story.com" link. All our love, Tracey

6/14/07
HI Friends and Family. I have just returned this last weekend from taking my other daughter, Shawna to lucille packard, Children's Hospital at Stanford. She has to go up and see her specialist, Dr. Feinstein and have some general tests run, a couple times a year. It was a good opportunity for she and I to spend some quality time (7 hour drive each way) together, and her to be the center of my attention. It was great also, for me to be back in the area, after being away for two years. It is so pretty and clean in the Bay Area. It was wonderful too, to meet up with staff and old friends and know that Amanda and I, had not been forgotten. It was heart warming for me, to see how much of an impact that Amanda has had on so many people. All over the hospital, anyone who saw and recognized me, asked excitedly if Amanda was with me? Shawna is a celebrity in her own right, with all that she has been through with her illness. She is very well known and remembered in ICU. However, it was a litttle overwhelming for her, that so many people in every area of the hospital knew Amanda. It just reminded me of all that she and I have been through together and that these people went through it with us. I felt the love from everyone, and Amanda was very touched when I shared with her, all the people that sked about her and sent her messages. Shawna had the good fortune of happening to be there the night of the hospital prom and with last minute notice and preparation, was able to go. As Always, the hospital teachers and staff did a wonderful job. The patients looked wonderful and happy being dressed up in their special duds. Amanda wa very disappointed about not being there, but was pleased Shawna could go. The prom is pretty much were Shawna's dad and I developed a friendship through the girls...and well the rest is history. Amanda is doing well. She feels well. She is very skinny, but had god muscle tone. The Dr. is looking into calorie supplements that Amanda would cooperate (tolerated the taste) and would help put some meat on her bones. Her blood pressures have gotten too low, so we are having to back off on some of the meds. She is very excited about going to The Painted Turtle dialysis camp at the end of the month, for a whole week. I am excited for her, and me too She needs and deserves it, though. We are all doing well. Sean (my husband) is not enjoying the ikky stikky heat we are having, but it brings him lots of work (he works in heating, A/C and refrigeration.) However, he keep our house at sub zero temperatures (that is a little exaggeration) and so he is soon made comfortable, at the end of his long day. Please keep us all in your prayers. Pray for Amanda to have peace in her heart. She is at an age now where everything takes on a whole knew meaning and connotation for her. I am so glad I am through all that, but it is a dramatic age. Our love to you all. May God keep and bless you and your families. Love, Tracey

06/01/07
Hi Everyone, Sorry it has been so long, since an Amanda update. Amanda is doing well. She is really working at looking like an "almost" 13 yr. old in a smaller body. She was given a GO AHEAD by the psychiatrist on the Psych Evaluation for transpant. He said that anyone who could smile after what Amanda has been through, is a survivor and will do fine. We are still waiting to hear about the testing with our donor. This hospital seems to move at its' own pace. We have been looking around for a larger home to rent. We especially want something by this fall, when Amanda goes in for her kidney transplant and is tripleimmunosuppressed. It is very crowded here with 7 people in a 3 bedroom condo, and difficult for Amanda , Jess and Shawna ro share a room. Shawna is jealous of Amanda and her ability to be liked and make friends easily. Amanda is jealous of Shawna because she is well, stable, and gets to do all the family things we do on Sundays, while Amanda is on dialysis. Poor Jess gets caught in between. However, through therapy for all three, Jess has found her voice and has been able to establish boundries for herself. We are also looking at letting Jason, my smallest step-son go live with his mom for awhile. He was diagnosed _"loosely" as Obsessive, Compulsive with Psychotic tendencies, and had to be admitted to a psych facility this last month, for a week. It was a very emotional time for Sean, myself and te rest of the kids. Jason hurts (slaps)the kids at school and at home, but there is no anger behind it (except fpr those who are getting hit,) he just does it. He kept locking himself and me, out of the house on Friday. The second time I went and got a neighbor's ladder to get in an upstairs window, I lost my balance and fell from the top of the ladder. Luckily the neighbor was a nurse and had been watching me. I was taken by ambulance to the ER all strapped down on a board (not a fun thing!) I couldn't move my arm and had passed out. God is good. I have never had a broken bone before, and don't now. They thought I had broken my clavical bone and pelvis. It is not fun to fall from 10 ft. up and crash yourself into the ground. Long story shortened, I am in a lot of pain, but I am okay. We need a break though. The five kids have so may needs, that with Jason in the home right now, He requires all my energy, time and sanity. I could keep going on and on with one exciting adventure after another. Good news, is that my friend Lynn Giles has just completed a book, loosely based on Amanda's story. I can't wait to read it, and hope all who read this website will check it out too. We will give you the pertinent information when we get it. I want to thank you for all the prayers and support with love, that we have been getting. God hears you and blesses us daily! Love, Tracey

04/26/07
Dear Friends, Amanda is doing well. She has grown an inch in the last 4 months, and is VERY happy about that. We are hoping she will reach at least 5 ft. The good news is that her tests reveal that her bone age is much younger than her chronilogical age. So, this means that she does still have time to grow. Amanda's twin, Jessica is about 5"5 and still growing. It is scary and pleasing to have your kid look you straight in your eye, and wearing your shoes (because they fit!) Everything is going well. We are hoping to get Amanda's psych evaluation done in a week and a half, then finally, move forward with testing my friend Anna as a possible match as a kidney donor. I am not sure if we would not want to hold off for a bit, to give Amanda as much time off the steroids in order to grow? It never stops being a balancing act of weighing one decision out over another. I was looking at going to work for a friend a month back, but realized that as much as "my own identy" sounded good to me again, there was just no way possible with five kids in the house and all their individual needs, not even on a part time basis. Things are going better now. The three girls (Shawna, Amanda, and Jess) are seeing the same therapist, an usually, together. This lady has been great in helping with their individual issues, along with issues pertaining to each other. It has been a struggle trying to combine the two families. I feel things are settling in better than they ever have. Our living space is still far too small, and it seems like everyone is trying to be in the same space at once (mine!) Please continue to keep our family in prayer and specifically that Amanda would grow quickly and that her transplant would be a success. All my love, Tracey

03/20/07
Dear Friends and Family, Amanda is doing very well. She got an A+ report card from the nutritionist today, for perfect labs. I got a much needed break, and was able to go visit my family in Grass Valley. My husband Sean stayed home with Amanda and Jason. The other two kids went to see their other mom. It was so beautiful, I have hopes of one day being able to move there, once Amanda is healed. Her growth hormone shots are going well, as far as tolerating the discomfort. We are still waiting anxiously for growth, but are hopeful. We have been informed that our littlest, is not Bipolar, but extreme ADHD. Hmmmm..., the jury is still out as to whether we are buying that at this point. Everyone one else is doing well, and looking forward to Amanda's next transplant. On a sad note, we were very sorry to hear that our wonderful friend, Kelly Moravec, passed away on March 6th. He will be greatly missed, but we know we will see him again. We send our prayers and love to his family, who fought the good fight with him. Please help us keep the Moravecs' in our prayers during this difficult time. It is important to keep our focus on the Bigger picture. All the Glory to our Savior! Love, Tracey

02/21/07
Hi Everyone! Amanda has been out of the hospital for almost a week now, after spending a week in ICU. As my mom wrote in the previous update, the whole process of removing Amanda's kidney was pretty extensive. The surgeon was fantastic, I am not sure anyone else could have done what he did, long story short, after having some life threatening situations from the start of Amanda's admission to the hospital, she is now out and trying to recooperate. Dr. yorgin has moved Amanda to 4x a week dialysis. I turned in the paperwork yesterday, for my good friend Anna Searle to be a prospctive kidney donor for Amanda. I have faith and hope that this transplant could be the one to fix Amanda. Many people ask why this time would be any different? There are a few things that we will do that we were unable to do before, prior to transplant. We will not be using Retuximab now. Thre are new studies that show Retuximab has been linked to some transplant fatalities. There are several cases where the second time around did the trick. Ultimately, it comes down to what God wills. We trust in that. Amanda's illness has taken our lives down a path I could never have forseen. I have a wonderful husband and three new children. My new daughter's illness of Primary Pulmonary Hypertension has been well under control since coming to live with us. Our smallest son (the boys are twins) is in the process of being diagnosed. We have heard them mention Bipolar, but hopefully we will have the medicine and understanding to better help him and give our household a little more peace. The kids are settling in together and accepting us all as a complete family. Jacob is included in that too, eventhough he lives with my brother and is part of his family too. I want to express my appreciation to our church Highland Immanuel for being so supportive during Amanda's hospitalization and all the people who brought in food. Thanks to everyones support and prayers. A continued thanks to Lynn and Tom Giles who continue to manage this website and make it look so nice and run so smooth! All my love, Tracey

02/10/07
The surgery was postponed 2 x's Thurs. due to critical elevations of Potassium, but she finally went in about 5:30 p.m. It took 6 hours instead of 2 & required a lateral abdominal incision, rather than the laparoscopy we had hoped for. Several major organs had to be "moved" in order to get to the kidney, but things went well & she came out about 10:30 that night. The operating surgeon had been working with her since 4:00 a.m. that morning, & we were also concerned about his efficiency, but God was actually in charge, so Amanda was safe. She will be in ICU for a few days & is still in a lot of pain. Tracey is exhausted, but glad the surgery is over. We appreciate your continued prayers. Thank you so much for lifting us all. Love, The Foxes

01/16/07
Dear Friends and Family, Amanda is doing well. She recieved a grade report from the Renal Nutricianist at the hospital today of straight A's. You would have thought it was her school report, she was so happy! She shall get her ever-so-loved "Monster Tacos" from Jack-n-the-box, on Wed. before her Thursday dialysis. Despite Amanda's labs looking good and her feeling well, she does not look well. She is very frail and pale, with big purple circles under her eyes. Dr. Yorgin feels that because her PRA is higher (creating antogens that will fight off her kidney and future kidneys,) in addition to her weakened state, is ever so much more of a reason to get her transplanted kidney out. She was schedule five days ago to have it removed, but an operative (dictation) of the original transplant, could not be found. This is important for the surgeon here to know how the kidney was put in and how it was hooked up (it had two arteries) at Stanford, so he will know precisely what he is dealing with, before he goes in. We are happy to know that it will be a laproscopic surgery verses the bilateral kind that she had previously. Unfortunately, to date they are still having trouble locating it in Amanda's files, or if there was ever one even dictated. The good news is that with the surgery being cancelled, Amanda and her sisters, Jessica and Shawna were able to attend an annual Renal Support Network prom, in Sherman Oaks. The girls had a fabulous time, wearing evening gowns, dancing, eating, meeting celebrities (Sinbad, the sister from Even Steven, etc.,) and called us from a Hummer Limosine, they were riding around in. They won prizes, danced with boys and had a fantastic time! We feel very fortunate Amanda could attend, and bring her sisters with her as her guests. Amanda has been in great spirits since she attended. We went yesterday to the mountains and went sledding. Amanda and Jessica insisted on riding together on almost every turn, and as a result spent most of their time following off and rolling down the hill together. Even I went down a couple of times, just to be reminded I am not 12 yrs. old, and my neck and back do not endure going off the jumps, that the rest of the kids do. I will try to keep you updated on Amanda's next scheduled surgery. It just seems that with five kids in the house, I never get my turn at the computer, unless it is late at night, and I choose to go to bed, instead. My love to all, Tracey

12/23/06
Hi All, Things have been quiet for awhile. Amanda has finally, reached a point where she seems stable. We had to really come down hard on her earlier in the month, to get her labs under control. I am waiting to get a surgery date to have Amanda's transplanted kidney removed. It is concerning, that she is still wearing some of the same clothes that she wore three years ago! She seems to be getting thinner too. The poor little thing, is barely pushing 70 lbs, at 12 1/2 years old. I think it is time, as it has been suggested before, to put Amanda on anti-depressents. She is very emotional and says she feels like crying, all the time. Sometimes she just starts crying for no reason at all. It helps to have Jessica and Shawna around her, (even if they are bickering,) just to take the focus off of all else. It is time to give the kid some help, emotionally, though. On another note, we expect Christmas to be fantastic. Steven's Hope's Organization has supplied Christmas presents for the whole family this year (even the new additions!) They have really gone all out, and we are very appreciative! It has been a difficult year, but filled with many blessings along the way. Sean and I have joined a Blended Families group at church, which has been great for both of our peace of minds, support, and some of the insanity that is encountered with trying to combine two families. I am sorry we were unable to send out any Christmas cards this year, things are tight. Just so no one thought they were forgotte, everyone was remembered! We all hope that you have a safe and peaceful Christmas. Through all the stress, hustle and bustle, we pray you can take the time to appreciate that it is Christ's birthday that we celebrate. All our love and prayers, Tracey, Sean,Jacob, Amanda, Jessica, Shawna, Ryan, and Jason

11/27/06
Hi Everyone I hope everyone had a nice Thanksgiving. Camp was nice, we all enjoyed getting away. We went to Grass Valley after that for a nice visit with my brother and his family. Our trip was cut short though, because I was unable to dialyze Amanda. I think it is a combination of her catheter and the sensitivity of the machine. Needless to say Amanda is back on hospital hemo dialysis. We tried to go see family for Thanksgiving, but Amanda's potassium levels were running too high for her to miss a treatment. It is disappointing that the home dialysis did not work because we are so tied to the hospital again. We can only travel a short distance away. We had a quiet Thanksgiving with Sean, myself and the kids. We are in the process of seeing about removing Amanda's transplanted kidney, in order for her to stop losing so much protein, Albumin and the ability to grow. Amanda has started asking if she will look like a child her whole life? With the kidney out we could stop the prednisone and restart the growth hormone shots. We have begun talks with Stanford about transplant. The question will be wether they consider a live donor transplant to a deceased donor. Either way we will make sure that the full protocol for plasma pheresis treatment is followed and that Amanda receives Rituximab prior to transplant. We will see. Tracey

11/03/06
Dear Loved Ones, Thank you soo much for all of your prayers!! I was just in awe of how many people contacted me to let me know that their churches and family were praying for Amanda. They were answered. Amanda is doing great. The shingles cleared up pretty quickly, although they have still kept Amanda in isolation, requiring everyone who enters her room to wear a gown, gloves and a mask. Last night I presented the news to Amanda that the doctors were going to release her for today, and allow her to attend a family kidney camp, for the weekend. Amanda was so happy she burst into tears. She was too sick to go to summer kedney camp. So this after noon Sean (my husband,) myself, Amanda and Jessica are going to Lake Hughes for a quiet family weekend with other kidney patient familys. Fortunately, one of the doctors from Loma Linda Hospital is going to be up there too. AS far as transplant, well it is on hold right now. I am just looking for a much needed break this weekend. I won't have to dialyize Amanda at camp, so I think it will be a good time for all. ANd, Thank you, Thank you, Thank you for ALL of your prayers!!!!! All my love, Tracey

10/29/06
I went to spend a few hours with Amanda this morning in the hospital. I trust the Lord in all things, but this morning I found myself asking again WHY? Amanda was in so much pain. Because she is in isolation< I was required to wear a gown, gloves and a mask. Apparently the stem of almost all of Amanda's problems are from the shingles. She has been complaining for days that she hurt, before the rash and bumps ever appeared. The nurses had not taken her seriously, saying it was only her underwear irritating her leg. Amanda is now getting Newbane and Morephine every four hours around the clock, and is gaining some relief. As all parents must feel, I still wish it was me instead of her. Even though she hurts, the first thing Amanda asked this morning, was how was Jessica? (Jess is getting better.) Pray for our family. Pray that I am strong and do not feel like Job (but with Amanda being made to suffer.) Thank you to our church, Immanual First Baptist, for visiting with Amanda and praying for her. As Always, Tracey

10/28/06
Hi Everyone, Amanda is in the hospital again. She went in Tuesday night. They did not have a bed right away, so we went to the ER. Unfortunately, eventhough we got there at 9pm, they did not get her a bed on the critical care unit until 4:30am. We thought she went into kidney rejection (because her immunosuppression meds had recently been reduced,) or she had appendicitis. She was having a lot of flank pain and could not put pressure on her right foot. She is still in a lot of pain after being there three days. We still believe she is experiencing rejecyion and her kidney is giving her a lot of pain still, but she is getting little or no pain medication. This is because it was discovered that she was impacted full of stool all the way up to her rib cage. She put her own NG tube down her nose and into her stomache and has been getting GO LIGHTLY (contradiction) put into her stomache. This has caused non stop diarhea, and a terrible itchy rash all over. Needless to say, Amanda is miserable. Sean has taken his three kids to Modesto to see their other mom during school break. It would seem this would give me more time to Amanda, but Jess has come downwith a nasty case of the flu. I am concerned for her, trying not catch it and take care of her and for when Amanda does come home from the hospital. A friend sent me some wonderful information on how trials strengthen us. It helps to keep your head up On another note. We are considering returning to Stanford for Amanda another kidney transplant. We are still hoping Sean will be a match, but are still unable at this point to get any testing done. Keep us in your prayers, and that they can stop the rejection and Amanda's pain quickly. Thanks to all for your love and support! Love, Tracey

10/14/06
DEAR Friends and Family Things have been a little rough lately. Amanda is in good spirits and feeling well, though. Home hemodialysis has not been what we expected. The treatments have been running 3-4 hours a day instead of 1-2 hours. Plus, there have been numerous problems with her catheter clotting off. She has been admitted twice in the last two weeks, and everything checks out fine in the hospital. We hate to give up the home hemodialysis because we have put so much time and effort and training into it, and not reaped any benefit yet. The kids are coming up on a school break and we were looking forward to taking some much needed time visiting family up North. The home hemodialysis would allow us mobility and the means to travel (which we have never had before.) I am waiting for a new machine to be delivered today, so I can get direction on how to calibrate it and start treatments again. Amanda's treatment had to be stopped yesterday again and I could not return her blood because of all the air in the lines. She needs dialysis badly at this point and the swelling is evident. It is very hard to monitor her sodium and fluid intake, because she is sneaking it. I am pretty frustrated and at my wits end at the moment. On a good note, the family has settled in and are finally becoming adjusted to each other and the sharing of some cramped space. We got what we thought was a "killer deal" on a used chair, to do Amanda's dialysis in. However, when we got it home we immediately became aware that it was a monstrosity, humongous chair, ( no wonder they show it to us in a big empty room) and that the people we bought it from, are the ones who got the "killer deal." Amanda looks like a doll in it, and I a small child. My feet lack a good foot from touching the ground. It is one of the largest pieces of furniture in the house. We have utilized it though, the family can all sit together in it during movie time (just kidding.) Life is good, but very busy. The car is up for sale in hopes we can find a vehicle that will fit all of us, and that we can begin to travel a little bit if all settles down with Amanda. We are also, proceeding with transplant again. Sean, my husband is going to be testing soon as a prospective donor. We hope this time around will be exactly what Amanda needs to be cured. Her other dad's kidney was a good kidney and has lasted a long time. Amanda is hoping to be able to keep that kidney too, and have a little bit of both her dad's with her. We give it to God, and ask that you do the same. We want to send a big Hello to all of our friends in Carson City and the staff at Packard Children's Hospital that became our friends and family. We miss you all! All our Love, Tracey

10/12/06
We Need Your Help in Donating for Amanda's Medical Care for Amanda's Next Transplant. The family would appreciate anything you can do to help. Click on the How You Can Help button to donate. Thank you so much!! Lynn Giles

09/15/06
Hi Everyone, Training for home hemodialysis has been going well. Amanda started off a little unsure. Walking through an adult dialysis center to get to our training room on the first day, was a little scary for her. She even cried a little. But when I explained to her how good it made those old folks feel to see her bright pretty face, she made a point to smile and speak to people as we left. The time frame of the treatments is still ending up to be around three hours a day. We had hoped to shorten that time, but most of all, we just want Amanda to feel better and to have a higher quality of life. Today was the first time I have been able to get her pressures up during treatment and not have to sedate her at the same time. Everyone at home was happy and suprised to see us this evening instead of tomorrow morning. We have been been staying in the area all week in a hotel, so we are glad to be home for a couple of days! It hasn't been too bad, though. Amanda and I have enjoyed some of the quiet alone time we have had together and we did get to sneak next door to Marie Calendar's one night to share a piece of cheesecake. It was a wonderful treat. We also, had the pleasure of hooking up with my best friend from college, Andi and her kids. We hope to see more of them and some other old college pals, next week. Keep us in your prayers that things continue to go smoothly and that Amanda's catheter keeps working. We had a scare one day, when it clotted off. We know a fistula is inevitable. Keep us in your prayers about our living situation. We are running out of room. My step-daughter had an oxygen machine and tanks delivered the other day and we are awaiting Amanda's dialysis supplies to be delivered next week. Thanks to all for your support and love. Tracey

08/31/06
Dear Friends and Family, Things are going well for Amanda. We have no infections, so that is very good, because that is a question we always seem to be asking. Life is very busy with our new added household, but we are learning to adapt. bunkbeds improved the situation, but with starting home hemodialysis soon, we are confronted again with the issue of space for all of Amanda's supplies. We have put it to God and are waiting on his answer. In the meantime, Amanda and I will be traveling to Encino next week to start training. That is if CCS can get our hotel accomodations set up for the two weeks we will be there. I am really looking forward to looking up some old college buddies and hanging out a bit if time allows. We also are starting tranplant process. We are considering the prospect of a live donor again. Please be in prayer about this and about locating a possible willing donor. Our family has so much going on right now (whose doesn't?) Please just lift us up in prayer, God know what we need, and when to give us or reveal his answers for us. Thank you to all of you who have been so dedicated and loyal in our plight. God Bless to all of you, and may you find the joy in your families the way we do in ours. Love, Tracey

08/07/06
Dear family and Friends, Amanda is in good spirits. She is so happy to be back at "regular school." We are going to keep her out on Tuesdays and Thursdays following hemodialysis, per the doctor. She fainted for a moment last week following treatment and fell in the bathroom. She caught herself on her hands and knees. She skinned her knee, but did not want anyone to know, because she wants so badly to stay at school. I spoke with the school's RSP teacher today who has been very helpful and accomodating. They are trying to set after school teaching for Amanda and Jessica on those days she will miss, to help her catch up. We are absolutely thrilled and hope the Director will give this a "Go." I had some intensive abdominal surgery a few weeks ago. Recovery has been a slow process, and against my will (the slow part.) However, when I am getting around a little better, I will be going to Orange County to do training on a home hemodialysis machine. We are very excited about the opportunity it will afford Amanda at feeling better and being able to do more. Right now she is suppose to be doing some sort of exercise for 30 min. a day. It just isn't possible at this point. If I can get to it (I move slowly, remember, lol) I need to sit Amanda down and have her write what has happened to her and what she wants to do physically. It is for the purpose of getting a grant for her physical debillitation. She at first said she wanted to play squash or polo (where does she get this stuff?!) She discussed playing tennis, but this is coming from a little girl who is very physically compromised. She is considering tap lessons now. She and her sister turn 12 on Wednesday of this week. Boy, how time flies and stands still at the same time! I am the only one who has all the wrinkles to support what has been happening for the last 4 1/2 years. Amanda is beautiful. She is smaller and very thin, but amazing just the same. She is so bright and has such a drive to learn and catch up. She has had a terrible fight these last few years, we all have. But she is still going strong. I just can't believe she and Jess are going to be 12. Amanda is happy, and most of that is directly related to Jess. It is easy to see when their together how grateful they are for each other. Even when Jess has hidden all the light bulbs from the lights in their room, so Amanda can't go to bed after Jess, and try to make Jess get up and turn the lights off. I don't let them know when all this is happening, but they crack me up. I feel like I am living in a comedy show. We all have many things to be grateful for. I am grateful that I have this website to express feelings and what's going on and I am grateful to all of you who keep us going. God Bless to all, Tracey

07/12/06
Hi Everyone, Amanda is trying to recover from her new catheter surgery (she is in a lot of pain.) They put in a much larger catheter on Monday in an odd place. It comes straight out into her armpit. She woke up from sedation very angry, wanting to know if whoever had put her catheter in had done it with their eyes closed?! Fortunately, we were able to make a trip to Disneyland on the Saturday before, and move her surgery to Monday. The Loma Linda School of Dentistry raised money to send our whole family to Disneyland. It was a big undertaking with my new husband (we eloped in May, but he and his children have not yet moved her) so, we had 6 kids with us, including my son Jacob. We did Disneyland for 13 hours. I was glad to see it and glad to leave it. Amanda and my new daughter, Shawna (who has Primary Pulmonary Hypertension) both required wheelchairs, but this afforded us the luxury of moving through the lines much quicker. Amanda was very hot and tired, but thrilled just the same. She was able to go on all the rides, and all the rides she rode! We feel very blessed to have been given the opportunity for our family to make such a wonderful trip. Amanda's new wheel chair arrived yesterday, so I am hoping to be able to get her out of the house more, other than just to dialysis. We are still waiting to hear about the home hemodiaysis machine. Dr. Yorgin is trying to get a special grant for Amanda to have a special trainer come work with her and build up some muscle and strength. She still cramps badly, during dialysis and wants me to rub and push so hard against her legs that they feel like they are going to break! Yesterday we were also, informed after another ECCHO, that she has a blood clot in her heart. I am not worried about this, because it can just get in line with everything else. I know God will take care of it like He does everything else. I am just hoping to improve Amanda's health in time for school. She is so far behind, but wants so badly to be back in school with other kids. She also will start counseling soon, she and Jessie. Both have some very real issues, that I can't fix. I am praying this will help both of them. The transplant team has contacted me for Amanda another kidney transplant. I want this, but I am scared to get my hopes up and to get Amanda's hopes up most of all. She is resilient, but to go through what we already have again, and to be met with failure, is a big question. Please keep us in your prayers. Tracey P.S. The pornography issue has been cleared up, and we can recieve messages again. Amanda and I would love to hear from you!

06/30/06
Dear Family, Amanda is doing well. She is not diabetic, afterall. It was the Prograf, which she did fine on in the past, but created chaos when we tried to switch back to it. Needless to say, Amanda is back on Cyclosporine and dialysis 3x a week. She seems to be tolerating the dialysis better, but still requires a wheel chair after treatment. We were able to go to our family reunion, although it was a long drive and we had to do it in several stages. It was so worth it and such a blessing to see our family members at the beautiful Lake Tahoe. Our family came from far and wide. It was a real treat and all of the kids had a great time! Amanda couldn't eat all the same foods (hotdogs, etc..,) and had to limit her activity level and fluid level in order to come, but she did very well. She does continue to lose weight, which is not good. She is down to 70 lbs. She became very upset yesterday when her medical ID bracelet, that is so beat up it can hardly be read, slipped off her wrist, because her wrist was so small. Yesterday she had another ECHO after dialysis and an xray, to make sure she has no fractures in her vertebrae and see how her heart is doing. She has a lot of back pain and has to lay or sit on a pillow because her tail bone sticks out so far. She is happy that she is still being allowed to swim. This will be put on hold next week though, because her current catheter, that was replaced in April, is not working. She will have a larger one put in on Friday. She is oviously, not looking forward to this. Continue to pray for good days for Amanda and for good things to come to her. We appreciate everyone's love and support. The outpouring of love and strength continues to touch our hearts. Thank you! Love, Tracey

06/14/06
Dear Loved Ones, Amanda is out of the hospital and is well....doing better, but worse. She is out of crisis, and feeling better, but is on dialysis now. It is very hard on her, and makes her very sick. She is so little that I have been out at the thrift stores looking for size 8-10 clothes to fit her. She looks like a concentration camp survivor with a head of beautiful long blond hair. We are waiting for our prescription of a wheel chair to be ordered, being that Amanda can't walk after dialysis, and not very far in between. We have had a few melt downs about the extra restrictive diet of a dialysis patient. She has informed me that when she is 13 she is moving out and buying her own house and her own Jack-N-The Box. Then she is very remorseful when I get mad. Unfortunately, I have to act mad when I am not to try and give her reality checks. On a good note, she and Jessica start their singing lessons tonight, provided by the Loma Linda School of dentistry. They are very excited. They have been waitin g for this since December, but Amanda has always had something going on that kept them from starting. I am very happy for them. I think once we can get on home hemodialysis, Amanda will feel better. Also, once she can get off the 80mg of prednisone a day, the nightmares will stop and she will not have the arm and leg pain she has now. She was put on such a high dose of steroids because of the fluid that maintained around her heart even after her discharge from the hospital. ECHO after ECHO did not show improvement so they decided to get agressive and get the fluid off quickly. We are still waitng for results. We are hoping and praying Amanda will be up to a drive up to Tahoe next weekend for a big family reunion. We are going to try to take the drive in two days to make it easier on her. We were taking Angel Flight, but were informed that this did not qualify. We are hoping the doctor will give us the go ahead on Tuesday. Things are good though. Amanda is happy when she isn't feeling sick. She is anticipating camp at the end of July up at Stanford. We pray she will be well enough to attend. Please keep her in your prayers for strength, courage and that the pain and discomfort be taken away. Love, Tracey

06/05/06
Dear Loved Ones, It has been a rollar coaster of a week! Amanda went into the hospital last Wednesday night to do our regular removal of fluid. However, by Thursday morning things had gone terribly wrong. When I arrived at the hospital, Amanda was crying, coughing, couldn't breath, was running a very high temp. and was becoming hysterical. She settled down a little after being put on oxygen. They were also, in the process of doing an ECHO on her. There were doctors everywhere inside and outside of her room. She was so uncomfortable and chilled from the fever and all the commotion that she became overwhelmed and ordered everyone to stop touching her and to get out of her room. She was then moved to ICU, for fear she would become Septic. Apparently, the fluid retention had infiltrated her right lung and she has Phnemonia. In addition, the excess fluid had caused her heart to enlarge and she was experiencing heart failure. In order to remove the fluid quickly, she was dialyzed. They were able to pull 8 liters of fluid off that first day. Her poor little body was so worn out from all the mahem, that she slept for the next two days. Amanda continued to cough up a blood for several days following, butbenefited greatly fromphysical therapy treatments on her lung. She says the vibrating makes it feel like she is getting a massage. Yesterday, she was taken off of the oxygen and breathing on her own. Another ECHO was performed yesterday, and we are still waiting on the results. I hope to get her home soon and finish up the three antibiotic infusions there. She is going to need everyday Albumin and lasix infusion for now on. I am unsure as to how that will be managed at this point. Amanda is a tiny, little thing, right now with twigs for arms and legs. She is very lonely at the hospital, eventhough I visit a couple times a day. All of the calls from family have helped a lot though, and pleases her. I give Amanda a lot of credit. While she was on the step-down critical care unit, a nurse came in the room and informed us that Amanda's twin, Jess could not lay in Amanda's bed with her, that it was against hospital policy. We complied, but the next thing I knew, Amanda had requested to speak to the supervisor. When she arrived, Amanda asked if they would please let her sister lay with her, that she and Jess were twins. She told her that she gave her great joy and comfort and she she missed her very much and felt better when her sister was next to her. The supervisor smiled, and conceeded that Jess could lay with her. I was proud of Amanda and how she handled herself. It is a long way from other sick kids I see, who throw fits to get their way. The parents feel so guilty the kids are sick, they do backflips to give them whatever, whenever they want. They don'tsee that they are just making things worse. Kids still need boundries, we all do. I am just afriad some days that Amanda's wisdom and diplomacy out does my own. Amanda made me feel like I had gotten something right. Anyway, Amanda's creatine has hit an ugly 3.4. They are considering biopsying the kidney again, to rule out rejection. I think it is only a consideration though because it is pretty much recognized that the numbers reflect the decline in Amanda's kidney function. We will not continue to give her plasma phersis at this point. The detrement of doing so, now out-weighs the benefit. There are things to decide and address as to what paths we take (or where God takes us.) Amanda is also, dealing with an eating disorder, too. She has always been so honorable and honest, but now admits outright that she can no longer be trusted, when it comes to salt. She says that she has to have it and will sneak it order to get. This was already become apparent. She does not feel like eating if she can't have sodium. Her attitude does not appear as willfulness or manipulative, but more of an obsession. I was told about another girl from Loma Linda Children's Hospital, that had Recurrent FSGS, too. She received a 2nd kidney transplant and a heart transplant, buther family lost her to Anorexia Nervosa. It was the same situation that we are dealing with Amanda. The kids would rather starve if they can't have the things their renal diet entail and they crave. The term "Eating Disorder" takes on a whole new understanding for me at this point. Amanda has told me that she has missed out on a big part of life, that her body and she are miserable without salt, and that she is going to have it even if it kills her. She says that she knows she will end up in a better place. there wasn't much I could say to that, but to turn it around on her. How she would feel if I was in her place and took that position. At first she said I would have every right to feel the same as she did. However, she did not want to live without me, she then understood where I was coming from. It is very hard for her. Life goes on, but we do leave an impact on those we leave behind. I want Amanda home and to start preparing ourselves for what is ahead (if that is ever possible?) It does my heart good to see her with her sister. When they are together, the rest of life and it's troubles disappear. They are so happy and fulfilled together, even when they disagree. It is like watching a transference of energy from one to another. I feel grateful to God that I have twins (and an awsome Boy-Child) and that he gave each girl a special gift...each other. Please keep Amanda and our family in your prayers, for peace that surpasses all understanding. Love, Tracey

05/27/06
Dear Prayer Partners, Tracey asked me to alert you that Amanda is losing ground very quickly. Her kidney function moves between 25-45 %, a sign of deterioration of the kidney; her protein/creatin ratio is quite high, & they are unable to pull off much of the extreme fluid buildup her body is retaining. The best medical prediction was that she could be sustained with the transplanted kidney another 1-2 years, but things are moving much quicker than that. She needs daily albumen, which can only be administered in the hospital, & at this point she is too fragile for another transplant. Please keep Amanda is your prayers for healing, as we have all petitioned for so long, and for peace and comfort. She feels very sick most of the time. Tracey is dealing with some big decisions and needs the wisdom and strength that only God can give her. Your support and prayers have lifted us all so much and we ask you to please continue raising this little girl and her family to God's loving care. Thank you, Pat

05/24/06
Dear Friends and Family, I would love to give you all some good news. Our good news is that this is all in God's hands and we trust in him. Amanda has been hospitalized twice since my last entry. I just hate to keep writing the same stuff. The hospitalizations have been to pull fluid off of Amanda. We had hoped in the last month that even with Amanda's condition declining, we had at least another year before we needed to look at dialysis, which we knew it was coming. As of yesterday, it looks as if that ugly reality is only a month or two away. Amanda is down to 27% kidney function. Her Creatine is 2.8 and her protein creatin ratio is 37. Not good. Even though she has been taking growth hormones since January, she is not growing. She seems to be stuck at 55 inches. She said yesterday that she did not want to die a little person. Dr. Yorgin has doubled the growth hormone shots. They are already painful with the increased meds, but Amanda still has opted for one shot a day instead of two. I am comforted that Dr. Yorgin is still so diligent on Amanda's behalf. He is such a good guy. He and his family have been such a blessing to us. We have started to discuss transplant again, but are still hoping Virginia Savin (the original researcher) will come through and do some more tests, of the genetic nature. We still feel there is more to be understood about FSGS with Amanda's identical twin carrying the Savin Factor but not FSGS. We are also dealing with Amanda needing daily Albumin and Lasix, but home health care has informed us there is a shortage due to the war. This is something we are trying to maneuver around, to keep Amanda from having to be at the hospital all day long on a daily basis. God is good and reminds me daily that this is in his hands, not mine. I am learning all over again about the "wait and see" thing. I keep myself awake at night wondering what else can we do or where can we go? I am researching again, but coming up empty handed. I called out to God to tell me what to do, and was told to BE STILL. Pray for me to have the trust and faith to do just that. All my love to everyone...and Ken Ready, thank you for your information. Dr. Yorgin is following up on that. Never lose hope, faith or the ability to smile! Tracey

05/01/06
Dear Friends, Thank you for your continued prayers. Amanda has had a hard go of it for awhile. She has come down with a stomache virus, which has been more than a little uncomfortable for her. She is enduring the stomache cramps and the other upleasant side effects. To make matters worse, she does not feel like eating or drinking. This is made more difficult by her restrictive diet and the need for food to be in her stomache to take all of her medications. The the virus is a result of her Cyclosporine levels getting too high and combined with her triple immunosuppression, a natural organism found in the gastrointestines(I couldn't even begin to pronounce it) has gotten out of control. Although, I know the nurses at the hospital get tired of the constant tests and labs being ordred on Amanda, we are very grateful for Dr. Yorgin's constant vigilance in Amanda's care. He has always been able to pinpoint what is wrong with her, and rule out more serious complications. I would like to send out a big THANK YOU to John Pettibone for getting the pornography off of Amanda's site for us. That was very stressful for myself and Lynn Giles,(who oversees this site) to manage and erase on a daily basis. Once again, we appreciate so much, John's and Lynn's effort in making this site available to us to give out updates and information on Amanda and the terrible disease of FSGS. I also want to tell all of you out there who don't know us personally, how uplifting your emails have been to Amanda and myself. People from doctors, nurses, students, friends and family of children with this disease who, write in with questions about Amanda's experience with medications, reactions to treatements- and questions about work with pediatrics and understanding how a child copes with the difficulties a terminal (meaning there is no cure) medical illness. It makes us feel like we are not alone, and it hasn't all been for nothing. If we can help benefit someone in some way, as a result of Amanda's illness, then that is a blessing. We are very blessed, and find those blessings when we look for them, even amidst sorrow. I would like to send out our sincerest condolances to Amanda's pateranl side of the family. Last Tuesday, her Granpa Bill passed away after a five year battle with cancer. We are grateful that he and her Grandma Sandy were able to make a 12 hour trek from Redding a couple of months ago, in order to see Jessica and Amanda one last time. Amanda has only been able to travel to see them twice in the last four years. It meant a lot to the girls and myself. We are glad the Lord has taken him home and that the there will be no more pain. I have to reinforce to Amanda that dying is part of living. Over-all, Amanda is coping well and in good spirits. She is looking forward to me getting married and having new siblings (as long as they don't take up too much of my attention that belongs to her.) She actually, is very happy about being a more complete family. She can be "one of the kids" with a mom and dad in the home. It brings normalacy to her life were there is little. I think we have all wanted this for a long time, but I never thought we would have the room in our lives with all that we have going on. Most people think we are nuts with all the surrounding circumstances of combining the two families. We just laugh. We know that we have been blessed and God will work out all of the "stuff." All the kids (6)are excited about joining forces. God help us find the space (and the patience for them all!) It's all good!!!!! God Bless to all, and keep fighting the good fight (TO LIVE......one day at a time!) Love, Tracey

04/14/06
Hi Friends and family, Amanda's biopsy came back no worse than we expected. There was no sign of any rejection, only tublar atrophy and progression of the FSGS. Amanda is not aware of the numbers or the results of the biopsy, only that she feels better and has decided that she is being healed and on the road to recovery. We haven't the heart to tell her different and know that God ultimately has the final say, not the numbers or the doctors. We sre still grateful for Dr. Yogin and his perserverence in helping Amanda. We have already started discussing treatment plans and a new transplant for if and when things proceed the way they are going. I think it was harder on the doctor to give me the results of the biospy than, for me to get them. Call me cynical, but I always prepare myself for the worst case scenario beforehand. In Amanda's case, we always seem to end up there. That does not mean I give up hope in believing she can and will get better. That timing is up to God (unfortunately not myself.) Boy, this all sure teaches you humility and patience! Like I said though, despite a little swelling and the fact that Amanda is losing weight and getting smaller, she feels good for the most part. Because our holidays are so unpredictable, as to where we will be because Amanda gets ill, the whole family (minus my brother and his family,) have come in for Easter to our little apartment. We have my folks, all three of my kids and my fiance and his three kids. It is a big family and Amanda is pleased as pie. Please continue to pray for her strength and our family's strength to endure whatever may be ahead. God bless and hope you all have a wonderful Easter! Love, Tracey

04/05/06
Hi Everyone, Amanda is out of the hospital as of last Saturday. Dr. Yorgin released her because she was somewhat stable physically, but just hanging on emotionally. He is so good in that he values her emotional state of health as much as her physical state. She tried to escape from the hospital again and locked herself in the bathroom and cried when they tried to place a urethra catheter in her (I don't blame her.) I found a note she had left the nurses when she tried to escape one night at 12am. The note said that she was going to her mom's house and that she might stop at Jack in the Box for some tacos, and that she loved Jessica and myself very much. Amanda is doing the best she can to hang on, but hasn't had much relief from constant discomfort and anxiety. Her numbers are still not good. We saw Dr. Yorgin yesterday in clinic. Amanda's blood creatine is around 1.6 and her urine protein creatine ratio is maintaining in the 25's. We still hope these numbers can be turned around, but have already started discussing different options of dialysis for Amanda. A biopsy is scheduled for this Friday. This time Dr. Yorgin will oversee Amanda's anesthesia and try to head off some of the problems we have had in the past. The biopsy should gives us some straight forward answers of what we are dealing with. Jess wants to know why they can't take a kidney biopsy from her since she and Amanda are identical and so they can stop poking Amanda. It is funny how connceted they are. Jess has dreams that she is the one with the disease and that Amanda is taking all the pain for her. When they were little, Amanda used to take her immunization shots first so Jessica would not be afraid. I am grateful they have each other. I will update you on the results of Amanda's biopsy, next week. Please continue to pray for Amanda, that she would get well, if that is God's will, and that she would have peace of mind and not feel like God has forgotten her. I know He holds us in His hand and hurts right along with us, but she doesn't understand why He doesn't make her better if He can. all our love, Tracey

03/31/06
March 31,2006 - The area is for Tracey to update friends and family but it is the only way for us to update Amanda's site. We will soon update the front page of the web site but wanted to post that WE ARE NOW RAISING FUNDS TO HELP SUPPORT LIVING EXPENSES AND AMANDA'S MEDICATIONS. The following is a message from Tracey. "We did use some of the funds for costs (traveling etc...,) of doing an experimental treatment at Cedar's that did not work, as well to cover medications and other needs for Amanda that were not covered by her insurance. The initial raising of money for the research, the research doctor never responded back or followed through with some initial testing that had been discussed. There has been other interest though, when the medical field has found out there is an idenical twin involved. Dr. Yorgin is publishing an article regarding Amanda and Jessica's unique situation. We hope that will bring other doctors who want to research it and pursue it, out of the woodwork. Essentially, we are looking at needing the funding for those reasons, but not for use by the original researcher we were dealing with Dr.Savin.) We are still anxious to find another avenue of research and apply the funding for the purpose of finding a cure." ***Hopefully soon, the front Home page of Amanda's site will be updated with this information along deleting and blocking the awful porn and other advertisements that have been appearing. Please feel free to email me at info@amandas-story.org if you have any questions. Thank You, Lynn Giles

03/28/06
Dear Friends and Family, I wanted to start off by letting you know how much we have appreciated your encouraging emails. However, right now we are having trouble with the site due to all of the advertisemnt of pornography, gambling and general advertisemnt stuff that people are placing on Amanda's website. It is very sad the depths people will sink to to advertise let alone dispaly some really filthy pornography sites. I assure you that we are erasing daily this junk and trying to find a resolution, but I ask that you bear with us. I am really sorry about it. On another note, Amanda's surgery to place a new catheter went well yesterday. She got the wrong combination of drugs though and came out from the anesthesia, ballistic. It is a combination of the drugs and all of her anxiety. I guarantee that there were few in the hospital that did not know we were there. She screamed non- stop. She called the doctors liars and that everyone is hurting her. She can never see or focus and so she cries for her mother , but thinks I am someone evil trying to trick her. She bites, punches and will rip anything she can get ahold of, out of her. There is no point trying to reson her down or order her down, because it isn't really her. At some point an hour or so later, she will snap out of it, sleep and wake with no memory of the hurricane she left in her wake. If you tell her, she cries with shame, especially if she knows she beat the heck out of me trying to keep her from slapping herself in the head, and begs people to forgive her. It is hard to watch, but this was one of the worst episodes. Let's hope and pray that the fistual she is having placed at the the end of this week, goes smoother. Amanda is terrified of the fistual and does not want it, but we don't have an alternative at this point. We are losing the access in her chest. Acute renal failure has been turned around again, though. Please just pray for us, and that my mom can come help me with Jessica and to help give some comfort and support to Amanda (and me.) Love, Tracey

03/21/06
I don't know where to start. This is the second hospital admission since my last entry. The last one was so frustrating that I couldn't even write about it. Dr. Yorgin was out of town and the lack of communication at the hospital was enough to make me want to pack up and go back to Stanford. Needless to say Amanda was discharged without getting all the things addressed that she was admitted for in the first place. I still know that God is in this and has brought us to Loma Linda for a reason. Amanda has not improved since starting the LDL pheresis at Cedar's Sinai. In fact she is worse. Her protein creatin ratio is 22-25 and her creatin is 1.4-1.8 She begged the doctor to put her in the hospital after today's appointment. she is carrying about 10+ extra pounds of fluid, right now. She can't see very well due to the swelling in her eyes and walking has become difficult. Dr. Yorgin has agreed to the admission, and we are waiting for the call to tell us they have a bed. Last time, that call came at 12:30 am. You have to take the bed while you can, though. She will get Albumin infusions and Lasix to pull the fluid off. She will also be getting a new chest catheter and a possible fistula, place in her arm. I know Amanda is afraid of the fistula. It will be placed on the inside of her upper arm, and I am told it is pretty painful initially. That it will be similar to placing an I.V with large needles into that tender area (it will be tender for a few months until scar tissue developes.) This is being done with the hope of cutting down on the amount of infections Amanda gets, however there is the concern of blood clots. We are still looking at new avenues that may create some success for Amanda. I met a Dr. at Cedar's who was very excited to find out Amanda has an identical twin and that Jessica is carrying the Savin Factor, too. He knows people at the NIH (National Institute of Health) in Maryland. He said he was going to make some phone calls. Anything is promising at this point. For anyone who is interested, you can find a picture of Amandsa in the March 27th issue of People Magazine. Amanda's name is not listed but you can see her smiling face (before it got really puffy) on page 130, in the third row. Also, with Amanda's situation not improving, she was expressing a lot of despair, so I took her to see our pastor. We thought Amanda had excepted Christ before, but with things seeming to get worse, she has expressed some concern as to what would happen to her if she died. After the pastor talked with her she said she wanted to receive Christ into her heart. The pastor helped me to get a better perspective, just by listening to Amanda's childlike answers to his questions. It helped to reiterate that our time on earth is just a fraction of a moment compared to eternal life. Amanda prayed with him and took a huge step. She seems to have the peace now where there was anger before. She still wants to know "What is the Big Plan?" but when you ask her where she will go after she dies, whenever that may be, she doesn't shrug her shoulders anymore. She immediately answers "Heaven!" The Lord continues to give me joy, when I feel there is no more. Thank you to everyone who has kept us in their prayers. Pray for an easy surgery for Amanda during this admission and that we can get her kidney function back on track. It will be her first surgery here and she is nervous. So, am I. All our love as always, Tracey

02/22/06
Greetings! Amanda is very puffy. She has continued to run low grade fevers (over 100), and as her catheter has continued to give the nurses problems, it is being removed. The plan (if scheduling goes well) is to remove the catheter Friday and and wait until Monday to replace it. I don't know if the LDL pheresis is working or not. There hasn't been a tremendous change, but although an infection seems present, Amanda's protein creatin ratio has been decreasing from the 20's down to a 12 so far. We are seeing an increase in her blood creatin up to a 1.5, but it is hard to tell if that is a result of infection or dehydration. We are restricting fluids at this point due to all the edema, which could cause dehydration as well. It is still such a balancing act, and very hard to tell if the new treatment is working, because Amanda is never stable for very long. There are always so many other factors and changes involved. She is scared about the replacement of the new catheter, because Loma Linda is still new in many aspects that Stanford was not 9surgery wise.) The Loma Linda School of Dentistry was providing Amanda and Jessica with singing lessons as requested by Amanda as her Christmas present from them. Both girls were so excited, however, that has had to be put on hold with Amanda not doing well and our chaotic schedule. That applies to Amanda's Home school teacher too. Although things have been rough, Amanda is still in pretty good spirits. She is currently downstairs with Jessica, both wearing their grandma's old Mickey Mouse shirt at the same time. They are hysterical with both heads sticking out of the neck hole, while going up and down the stairs. The drives to LA are much more manageable as I have discovered a few short cuts and alternate routes. Reading this update, I am all over the place. I apologize for that, but it is how my mind is working right now.nGod Bless to all and please continue to pray for us. God sends us all your good thoughts and prayers. Pray for Dr. Yorgin and his family too. They continue to be such blessings and a sense of comfort to us. All my love, as always! Tracey

02/08/06
Hi Everyone, Just wanted to put in a quick update. Amanda's new LDL Aphereis treatments in LA have been increased to 2x weekly for six weeks then 1x weekly for another six weeks. The drives are hard, but I am hoping to have a new energy level by next week and just be able to flow with the new schedules, smoothly. It is unfortunate that I will have to pull Jess from school 2 days a week now to make the trip to LA with us. I have contacted our local church to see if anyone could help. I think someone came by last night but I was asleep. I wanted to send special thanks to the nice lady in Georgia who sent Amanda three pair of Croc shoes, to wear when Amanda's feet swell. They couldn't have come at a better timre either! The swelling has started again in Amanda's legs and feet. The shoes are soft, swishy rubber that give her feet lots of room and comfort, she also is sure they make her jump higher. We are very appreciative! We have not seen any results from Amanda's LDL treatments yet, and didn't expect to so soon. Her protein creatin ratio is up to a 19, but her blood creatin is maintaining at a 1.1. We have discovered that although Amanda is triple immunosuppressed from the plasma pheresing, her immunological levels are higher than they should be. This puts her at greater risk for rejecting the kidney. Thank God that Amanda's dad's kidney was a 5 out of 6 angio tissue match. I think this is definitely working in our favor. Amanda is feeling a little better. She is covered in an awful lot of bruises, from the aspirin, it does not slow her down, though. She was very excited about starting singing lessons for she and her sister, compliments of the Loma Linda School of Dentistry, (this was their Christmas present to Amanda.) However, due to the over-load of our new schedule, everyhting outside of the medical realm is being post-poned to a later time. Amanda is even accepting(somewhat) that she is going to have to be more of a cheerleader than a player at the Saturday church league basketball games. I just need her to remember to cheer postive things instead of "Go get him Jess! Knock him down!" Her competitivness does not end off the court. However, her concern and cheering for the other team as well as our own, won her a star after the game for being "The most Christ like." All the kids that play, win some kind of award to support good sportsman ship and positive role modeling. Well, Amanda has given me a treat tonight. She and Jess have given me a break, and made spaghetti for dinner. I hope it tastes as good as it smells! Thanks to all for your prayers. They all really do matter. I seem to hear exactly what I need to hear from you, especially when I am feeling low. God Bless and keep you and your families. All my love, Tracey

01/29/06
Dear Friends and Family, I want to thank you so much for your prayers. They were answered. Amanda was in acute renal failure upon entering the hospital, but that has been turned around somewhat. She was disharged yesterday, after a 4 hour process to find someone who was qualified to put TPA in her line?! After much frustratrion and waiting, a call once again to Dr. Yorgin expedited the process. Thank God for Dr. Yorgin! He was pleased at the progress Amanda had made, but commented on how swollen her feet and legs are still and that that would remain for quite awhile until we could get her protein creatin ratio down. However, Amanda's face was so thin after leaving the hospital and having so much fluid pulled off of her that she resembled her twin, Jessica more than she has for a very long time. She still tires easily, and we need to keep her feet up as much as possible to keep the fluid out of them. We were in search of some comfy soft shoes today, that she could still get on even if her feet swelled up even more. Not any luck, though. Amanda had an emotional outburst this evening after realizing that we are starting LDL pheresis tomorrow at Cedar's-Sinai. I think she is scared, and always feels like after everything she has gone through that it should be getting easier not harder (if only things could be the way they should be for kids.) She was very angry with God again and needed to vent. I let her, but then try to focus on the things that she has to be thankful for and the prayers that have been answered. After a long nap, she is herself again. Please keep Amanda in your prayers tomorrow and for the next nine weeks. We have hope and faith that this new treatment will improve things greatly for Amanda. Love, Tracey

01/24/06
Dear Friends and Family, I am trying to be optimistic, but I am definitly looking fear in the face. I feel like I am having Deja-vu. Amanda is so nephrotic right now that she can not wear shoes. She has to wear her slippers out because her feet are so swollen. Even then, I have to bring a cart to the car and put a blanket in it and then her. She can not walk very far and anything that pushes up against her skin leaves an indentation (pooling)because of all the fluid. Her legs look like tree trunks and it is painful for her to stand, because of the crease that is made where her ankles should be. She is asking the same old questions of what she did to make this happen again. She thinks she ate something or did something to cause this. She seems to want to place the blame on herself so she can understand or make sense of what is going on with her body. Im am trying to be casual about the sudden huge change in her body, but I am scared, sad and just a little bit angry. Amanda will be hospitalized today to try and pull this fluid off. She has gained 11 pounds in two weeks. Her creatin is a 2.2. She is having major kidney failure and it is affecting many other things in her body. We are doing the medication juggling again. Dr. Yorgin is optimistic that this can be turned around. He is also grave about the seriousness of what is happening and that things could easily go one way or the other. This is where the "art" of medicine enters into things. I am glad we have Dr. Yorgin in our corner. Please pray for Amanda's strength of mind and the endurance to overcome what is happening to her body. Pray for strength and serenity for me, so I can comfort and care for Amanda, and for all of us to never give up hope. All my love, Tracey

01/14/06
Hi Everyone, Amanda is sick again, and although she isn't feeling well at all, she has a good attitude. We were suppose to start the Growth Hormone shots, and then the LDL-A (low density lipoprotein apheresis) at Cedar Sinai next week, but due to Amanda being ill, it has been post-poned. She will start the following week, in hopes that she will be well. I will have to pull Jess out of school 2x a week for awhile, but there is no alternative with me being in LA, and not knowing when Amanda's treatment will finish, to get back and pick up Jessica from school. Jessica is always a real trooper, though. I don't know what any of us (especially Amanda) would do without her. Amanda's protein creatin ratio has jumped from a 10 to a 20 last week. We hope it is just the illness, but Dr. Yorgin and I share those same looks of concern that perhaps the Nephrotic Syndrome is taking over. Amanda wakes with all the fluid in her face and very puffy. Within a few hours, the fluid as moved out of her face a little bit, but her feet and legs swell so much, it is painful for her to walk much. I know Dr. Yorgin is concerned about Amanda not growing in these years when kids get all of their growth. Having her twin, Jessica to compare to, the difference is drastic. Amanda still plays the Alpha twin though. It is amusing to see her bossing Jessica around when Jessica toweres a good 6 inches or more over her. It has not changed the dynamics of their relationship. Other than, Jess has a life and people outside of Amanda, and Amanda does not. Amanda became very angry last night when Jessica talked about going to vist a relative for a few days. Amanda has issues with being "Left" because she can't be away from me or the hospital. I however explained to her that this was my life too. That I could not be away from her or the hospital either. That I was glad I could be with her and would rather think about what we could do and where we could go instead of where we could not. She got the picture and calmed down. I don't think it has ever really occurred to her how my life might be diiferent too, if she did not have to go through what she does. It is not the same though, for me. I had a childhood and did all of the things that she is missing out on and wanting to do. I choose to be with her. She did not choose any of this. I hope that God will her strength and wisdom through all her suffering, that will one day help her to help others in a way that know one else can. I don't know if it will be from treatment, hope or understanding. I know and believe in my heart that this has not all been for nothing. She deserves more, but i feel so undeserving of her (and me other kids.)She is a bigger blessing to me than she will ever know. She brings me grace and gives me strength and courage. She gives me hope to want and expect more. Please keep Amanda in your prayers for hope , strength and perserverence. Thanks to all who my words don't fall silent on. Love, Tracey

01/03/06
Happy New Year Everyone! We are looking forward to good things this year and are grateful for many blessings of last year, but at the same time we are glad to leave last year behind. Christmas was a quiet one for Amanda and myself. We had a big family gathering planned at my brother's, but at the last minute, Amanda came down with another Staph infection. Jessica went on up North with the family and Amanda and I stayed home and did home Vancomyicin infusions. We were grateful Dr. Yorgin allowed it to be done at home instead of admitting Amanda to the hospital for Christmas. My boyfriend and his daughter (Amanda's best friend from Packard Children's Hospital) came and helped make it a little more joyful occasion. Amanda was pretty upset about the change of plans to staying home and that we were without a tree. Christmas Eve she made her own Christmas tree out of her bedroom lamp and various decorations, which pleased us all. Amanda is missing Jessica a lot right now, we haven't been able to get Jess back from up North on an Angel Flight, due to all the snow. Amanda is feeling physically better now though, with her antibiotics on board. We only have a few more Vanco infusions left (2 week course total.) She is extremely puffy right now. It shows in her face, hands, legs and feet. Yesterday she could not close her lips because they were so big and could hardly see out of her eyes from the swelling. She had to ride in the grocery cart in the store because the bottoms of her feet swelled so much that they hurt to walk on. She still dose not get that this is "puffiness" is not fat. She has been dilligently running on the treadmill every night trying to get rid of the "fat," and is very frustrated about not seeing results. We are hoping that this will be the year that Amanda is cured and next year it will be a thing of our past. We want to give special thanks to John Pettibone for setting up this website for Amanda and maintaining it, Lynn and Tom Giles for running it and everything else they have been keeping together, for all of the help and support from the First Baptist Church of Carson City, Steven's Hope Organization for housing us when we first got here and their continued support and the friends and family that keep us in their prayers and their emails. To all the financial help that has been given and to all the people who write in and give their comments, questions and good wishes, and all of the very gracious Angel Flight pilots. It makes us feel like we are not alone in this and that maybe somewhere we are giving someone information based on what we have been through, that will help them. We ask that God Bless all of you this new year, and whether I mentioned you or not, nothing has been to great or too small or gone unoticed from anyone. He is sufficient in all ways! Our very best to you and all your families from me and all of mine. Love, Tracey

12/17/05
Hello Everyone, Yes, we had another hospital stay. Jessica came down with the flu the weekend before last. She ran high fevers in the 104s. Tried as I did to quarantine her to her room, I could not keep Amanda out of there. She would decide that Jessica needed some applesauce or tissues or just needed to be comforted. By the first of this last week, Amanda had the sore throat and her fevers were climbing. By Tuesday we had to cancel her plasma pheresis treatment and wait 9 hours in the hospital for them to find her a bed on a unit. Unfortunately, Dr. Yorgin was out of town, and things were run a little different than they would have been if he had been here. Amanda was discharged on Thursday with a 101 temperature. I was a little uneasy about it, but decided that with her cultures back negative, she was probably safer at home than in the hospital's infectious unit, sharing a room. She had a rough weekend, but is feeling better. She is very puffy after having missed most of her plasma pheresis treatments for the week. We are hoping the snow stops in Carson City and that Amanda is doing well by the weekend so that we can Angel Flight home for Christmas. I didn't get to sending out any Christmas cards this year, but wish everyone a wonderful Christmas. God has been good to us this year and made things take directions that I never would have thought happen. God bless everyone who has been so good to us. May He bless you all and keep you and yours throughout the new year! Love, Tracey and Family

11/20/05
HI to Everyone, We are doing better than we were. Amanda spent 5 days in the hospital last week. Out of nowhere Sunday night she became very ill. She started vomiting at 12am. By 3:30am we were in the ER with a potassium level of 9.1 and an EKG that was all over the place. Her white blood count was way up and she was running a high fever. Her blood pressure was dropping and she was having trouble breathing. I knew the staff was scared too, because everyone was running in and out of her isolation room. Amanda just kept crying for them to help her and please give her some medecine to make it stop hurting. The Morephine definitely helped give her relief, and helped her to go to sleep why the doctors tried to get the rest of her straightened out. I never get used to her hurting or going into crisis. The doctors tried everything and finally ended up putting her in the ICU on dialysis. That did bring her K down, but after numerous blood and urine cultures, everything still came back negative. nurses were very good. She had a male nurse who was wearing a Hawaiian shirt. Everytime Amanda came out of the Morephine she would smile at him and tell him that he looked like a Christmas tree. She is a hard kid to keep in ICU very long though, because the moment she feels any relief, she wants to be up moving around and going to the bathroom herself. This is not typically allowed in the ICU at Loma Linda Children's Hospital. After a couple of days she was moved down to a basic unit and was doing much better. I could not take her twin onto the unit because she is under 14, but was able to check Amanda out of the unit daily to the cafeteria the hall, to spend time with Jessica. After the third day the girls were getting difficult to maintain together. They become immersed in one another with putting each other in head-locks and trying to wrestle in the hall way or doing ballet leaps back and forth. It was ahrd not for anyone walking by not to smile at the two girls having so much fun together, even if one was suppose to be sick. The final outcome of Amanda's diagnosis was unclear. They think that Amanda had the flu or some other virus. She did get sores on her mouth, but they are healing and she is home now. She is much more fragile than she was before. She still plays, but doesn't have the endurance or stamina. When she isn't feeling well now, I need to take it more serious than previous, and just get her to the hospital. We are looking forward to a trip home to Carson City to be with our family for Thanksgiving. When we return, we will hopefully have insurance authorization to start the lipotein apheresis. I am praying for excellent results with these treatments. Thank you for your continued out-pour of prayers and support to Amanda, myself and my family. Love, Tracey

10/27/05
Hi Friends and Family, AManda is doing very well. Physically she is robust and feels good the majority of the time. We haven't gained a whole lot of control of the disease though. Her urine protein creatin ratio level maintains around 7. This puts her in a more stable condition than she has been, but still not acceptable or advantages to beatin g this disease. We can't increase the immunosuppression drugs to any higher of a level for fear of creating malignancies. I was given the choice and I don't feel it is an option. At this point we are going to go ahead and start the apheresing of Lipids at Cedar Sainai Hopstal. It is a far reaching extreme, but one that has had good reesults and little side effect. We are also starting the process of decreasing Amanda's steroid intake so she can start getting growth hormone shops for the next couple of years. She is not too far off the mark on the growth chart, but knowing that since she was a baby she has always been in the eightieth percentile and is in the twentieth percentile, we need to do something. Besides, we have her identical twin to compare Amanda to, and Jess is close to six inches taller than Amanada already. She told Dr. Yorgin on Tuesday that she did not want to be a little adult. He understood, although we all know that there is nothing wrong with little adults if you are suppose to be that way. Genetically, however, Amanda needs some catching up to do. She is doing very well in school. She catches on quickly, with the help of her Home/Hospital teacher. He has really inspired her and she is learning fast.We found a local Calvary Chapel church here, and it is huge! It has a wonderful women's Bible study on Wed. mornings. What is nice is that they have the same for kids there at that time. There are lots of kids being home schooled, so it is a great chance for Amanda to spend time with other kids, who aren't ill. She is really craving to have something or someones outside of the hospital that are for her, and not to do with her illness. We'll keep praying. Thank you to all for your continued emails and prayers. Thank you too, for not forgetting us. If all goes well we will travel home (Carson City) for Thanksgiving. It will be a chance for Amanda and Jess to get Baptized, there wasn't the opportunity in the past. God willing! All my love, Tracey

10/14/05
Good Morning to all, Amanda is feeling pretty good lately, and her labs seem to be better under control. We are still fighting migraine headaches and dizzy spells. All in all Amanda looks good. We took a trip this last weekend to the San Fernando Valley to see an old college roommate of mine. Amanda did not tolerate the trip very well. We spent the next couple of days missing apheresis treatments and trying to get her migraines under control. She is now being evaluated for the placement of an AV Fistula in her arm and additionally, whether or not she should start receiving growth hormones. The arm fistula would replace her chest catheter and reduce the number of Staph infections she currently gets. The doctors have differing opinions on whether or not Amanda's veins are large enough to support the fistula. We see a another doctor next week to get his opinion. I am still fighting the red tape of insurance authorizations for this county, for all of Amanda's appointments, procedures and treatments. I expect to get the hang of it or die trying. It would be easy to get mad at a person, but it is just the procedure and policies here or the lack there of. Amanda is happy though, and most people have no idea how sick she is. She is very emotional at home and gets jealous that Jessica goes to school and has friends. Jessica is compassionate and understanding to Amanda's feelings, though. She lets it roll right off of her. They are lucky they are twins and are so close and connected to one another. We haven't heard back from the researchers for awhile, but I will keep you posted. The weather here is warm and we may have finally, found a church. God is good. He continually blesses us and restores us. May he do the same for you. Love, Tracey

09/17/05
Hi Everyone, Sorry it has been so long since the last update. We are doing well. We finally found a place to live. Thank you to all who specifically prayed for this need. We are very fortunate to have some wonderful family in this area that I haven't seen for eons, who immediately pitched in and made our move to our new home happen. It was a great feeling to see them all, especially feeling like we had moved into uncharted territory for awhile. Also, we are so very appreciative of Steven's Hope organization allowing us to stay in their wonderful apartment while we were looking for permanent housing. They are wonderful and very supportive and understanding of our needs. Amanda's protein creatin ratio has come down to the high 8's, which we are very happy to see. These still aren't good numbers, but much better than the 53's or 20's which she was consistently at for awhile. We are still pursuing the research and little bits of information slowly creeps in here and there. Amanda has also, started Home/Hospital school through the school district. A teacher comes 3x a week for an 1 ½ hours to work with her. It has been since second grade that she has been in school consistently, so she has missed a lot of the fundamentals, even though we have tried to school her here and there when she was able. Amanda seems very excited to be learning on a regular basis again and is picking up on things, quickly. Dr. Yorgin and his family continue to be true blessings. Loma Linda is very different from Stanford. It does not have the money that Packard Children's Hospital does, so most things are very cost oriented. In some cases this has been a detriment to Amanda. She didn't respond as well to the more inexpensive drugs than she did to the higher end ones. Dr. Yorgin has been perseverant in getting the exceptions made in Amanda's case when it has been needed. As always, her health reflects the efforts he makes. She has been improving and is feeling good as a result. Her Dr. is a true Godsend and we hope that when you remember us in your prayers that you will keep him and his family in your prayers, too. So, once we get everything put away in our new home, it will be business as usual. Thank you again for everyone’s support and contributions. Thank you to my friends old and new, my family, and all those of you who just happen to come across us. We hope very good things are around the corner for Amanda and we will keep trusting and believing that they are. All my love, Tracey

08/17/05
Dear Family and Friends, Life has been a little tough lately. Amanda was admitted to the hospital for a few days, due to high fevers. She was thought to have had a Staph infection, but the cultures came back negative. We are running more cultures tomorrow before plasma pheresis. Her protein creatin ratio has soared to a 54. She has started swelling a lot. It has been very difficult and scary to watch history repeat itself with this disease. The last three mornings have found Amanda and I up at 3am. Amanda's legs and feet get so swollen, that she needs them massaged and rubbed with lotion to relieve the pressure. It is difficult for her to walk during the day. She has to take off her flip flops when we are out because her feet are so swollen. We started lasix today, so I am hoping that will relieve some of her discomfort. The doctor has recommended that Amanda spend as much time in the pool as possible. That it helps with the swelling. I am praying that this is a glitch or something we will be able to reverse. At this current rate of protein leakage, I have been told that she will lose the transplanted kidney in six months to a year. All these problems are also affecting her vision. She see spots and has blurred vision most of the time now. I am sure this is somehow related to the already existing neurological problems with the current swelling. We are still doing some basic testing with Amanda's twin, Jessica. We originally had hopes of a "blocking" factor being present in Jessica's system when it was revealed that she is caring the "Savin factor" without the symptoms of FSGS present. This is not the case. She is caring a higher level of concentration of the factor than Amanda is. It is not known if she will develope the symptoms or if there is a cure to be found within her. God willing that it is the latter. There just needs to be so much research done and it feels like we are running out of time. I pray this will not be the case. Please keep us all in prayer. We still haven't found a place to live, but have a possibility in the works for someplace for six months. If it even works for that time it will be hard to start over again in six months trying to find another home, but a God send for now, nonetheless. It has a pool in the complex and is 10 min. from the hospital, so it is perfect. There seems to be a good school close by, too. Jess is really acheing to be in school, being that it started last week. I could not enroll her up till now without a permanent address. Keep us in prayer about everything, but especially, that we can get Amanda's condition under control, again. Her Doctor that we followed here from Stanford, Dr. Yorgin, has been wonderful in all ways. I don't understand why this is all happening to Amanda, since we got down here, but I am grateful that we are here and that she can be under his care. We are grateful that he has been more available to Amanda than he was able to be at Stanford. We do miss all our friends and the staff at Packard children's Hospital, though. Love to all and thank you to everyone who continues to think of us and lift us up in prayer. Tracey

08/04/05
Dear Everyone, It has been awhile since my last update. We have gotten down to Southern California okay. The hospital here has a very different protocol for most everything. People have been very nice in trying to help us adjust. I still fill like a fish out of water, but I am trying to be patient with the changes and myself. It has been trying though with struggling with insurance authorizations for everything to trying to get Amandas medications handled and adjusted to generics and having to go outside the hospital to obtain them. We can stay at hospital out-patient housing for a few more weeks, but I am feeling the crunch to find a place to live because shcool here starts next week. It is just that what we have available to us to rent, is not even close to what the actual rents are. I have looked at much further away from this area as well as "bad" areas, and don't feel like either is an option or what God wants for us. I just wish He would let me in on the plan...because I am feeling pretty clueless. Amanda is thrilled were we have been staying though. Like I said, protocol is different here, nd they let their patients with chest catheters swim. Dr. Yorgin has been very cautious, but for the first time in three years Amanda has been allowed to have limited swimming activity. She and her twin, Jessica have had a great time swimming and doing "cannon balls" in the pool where we are staying. We are very fortunate that we have had this temporary residence. Amanda and I are still recovering from a pretty nasty virus that I caught when we arrived. Amanda's labs have been all over the place and we are still striving to get her stable. Fortunately, the virus has not caused her to have to be hospitalized yet. We got some interesting and exciting news when we got here. It has been discovered that after doing some routine testing of Jessica and Amanda that although Jess does not have FSGS, she is caring the Savin Factor tht shows up in people with FSGS Recurrence. We are very excite that Jessica may have an inhibiting factor or blocking factor of the disease. This could be a miracle cure if it could be duplicated to cure Amanda and others. We pray this is the case and not that the disease just had not manifested itself, yet in Jessica. So much research needs to be done, but it seems that we are getting closer and being presented with more and more evidence that We really can and will find a cure for Amanda in her twin, Jessica. Jess is not happy about the need for her blood to keep being tested. Each time she warns them to take all they need now and freeze it, because "this is the last time." She has been a trooper though, and reminds Amanda that she is going to "Save her" and should get more time as a result, on the Game Boy. I do feel like I am lost in the Sahara Desert, here at Loma Linda, but at least God has sent me beautiful, very funny daughters that adore each other, to keep me company and entertain me. Please keep us in prayer that we can find a place to live that is safe, close to the hospital and that we can afford (soon.) Also, pray that Amanda becomes stable and that we can raise the money to continue the research we need and that Jessica does hold the key to a cure. God bless all, and thank you for your love and support. It carries us through all of this uncertain times of readjustment. We feel your prayers and love. Be strong for us. Love always, Tracey

06/30/05
Amanda has returned from camp. She survived being away from me, although she never thought it possible. She wasn't able to swim with the other kids, but went hiking, kyacking, made puppets, took a dance and karate lesson. It was a wonderful experience for. She did however return with the onset a a viral infection, wich she proceeded to pass onto me. We have been pretty sick for the past week, and Amanda had to miss a treatmmnt as a result. Fortunately, even with a fever, we were able to avoid a hospital admission. No matter how you try to fight it when you are sick, sometimes bed is just the best place for you. Doing so, has benefitted us both. Amanda is back on to the road of recovery and was able to be pheresed today. There is still lots of packing to be done.I am trusting that God will manage all the details of getting us moved. I keep calling back the same people, because I have forgotten that I have already talked to them. It will work out though. Hopefully, my next entry will tell you how settled we are in Southern California. It will be hard to say good bye here, yet at the same time, we have lost so many friends here, that moving on will hopefully alleviate some of that grief. I don't know. Keep us all in prayer, Tracey

06/29/05
I wanted to send my utmost appreciation and gratitude to various individuals for their effort in helping raise money for Amanda. First is John Pettibone of Alphanet Communcations, Inc. and his family for his help in developing, desiging and maintaining this web site for Amanda. Another is a woman whom I have never met before and that is Kelly Heinrich for writing the story you have done for Amanda, putting it in your company’s newsletter and helping with the donations for her research. Another is www.bumperstickermagnet.com – Jacob Davis Productions for donating bracelets to sell for Amanda. I appreciate my college friends who are selling bracelets on Amanda's behalf, and the many individuals who have donated their money and passed on Amanda's web site so we can continue to obtain the $100,000 funding still needed to have research done for Amanda and possibly others to find a cure for this disease. I have never met most of these people in person and am very touched by each of your generosity. Unfortunately, Amanda has spent more time in the hospital and has had more surgeries than a little girl should ever have had but she is a remarkable little girl and has managed to keep her spirited and fun personality throughout these past three years. I can’t say enough on how grateful and appreciative we are for your help. We are still working on reaching our goal of $100,000 and will continue to keep you up-to-date on our progress. With deepest sincerity, Love Tracey and Amanda

06/16/05
Dear Friends, Things are moving fast. A couple of weeks ago, Amanda had to spend a couple of days in the hospital getting a tune-up. She had gotten dehydrated, wasn't getting enough sleep and playing hard. She got a migraine that would not quit. She kept vomiting and was very dizzy and seeing double. Neurology visited her in the hospital and told us that because of the double vision problems, that Amanda's migraines had progressed to "complicated migraines." That they had to change some of her medication, because it could cause neurological problems and vision problems long term on the current medication. The new medication as a PRN (as needed) med, works much better. After getting IV fluids for a few days, Amanda's pain went away (Morephine didn't touch it.) She is doing well and feeling better. She is very excited that she is getting to go to kidney camp on Monday. She hasn't been well enough in the last 4 years, to previously attend. She is a little anxious also, because she hasn't been away from me in all that time. However, many of the nurses from Packard, who she is very fond of, will be there too. I think I am a little anxious, also. I am not sure what I will do with myself, besides pack. It looks like we will be relocating to Loma Linda around the 12th or so. So, I will have lots to keep me busy. I want to say many thanks to everyone who is contributing to the fund raising. I appreciate my college friends who are selling bracelets on Amanda's behalf, and the man who donated them. Thank you to all, big or small, it helps. You are a part of a very big picture. Quick note. Amanda's site is undergoing a few changes. I wanted to let all of you know that we are transitioning from .com to .org. That is www.amandas-story.org . This helps us get the word out about Amanda to a larger group of readers. All my love and appreciation! Tracey

06/03/05
Hi Everyone, We have just returned from a trip to Loma Linda. We were there for several days and Amanda recieved a few treatments at the hospital there. It is going to be difficult in some respects because they won't allow other children in the treatment area, but the other children (siblings) can not be left unattended in the waiting areas. This poses a problem for a single parent with other children that just a sick child. I know it will work out though. This is in God's hands. It was wonderful to see and spend some time with Dr. Yorgin while there. I think this will be a good move for us. We not only will have his wonderful on-going care, but the experience and care of the other doctors there. The pace is slower in Southern California, so that is a definite plus. We are still missing the Carson City Area though, and even discussed with Dr. Yorgin the possibility of returning home one day after Amanda is cured. It is very comforting to hear hope and faith come from your doctor, when others tell you to just accept things the way they are. Amanda is doing very well. Her drinking enough water, continues to be an on-going problem. It is very difficult for her to do this. As a result it makes her dehydrated (very bad for the kidney.)This causes her creatin numbers to go up, indicating a problem in the kidney function. I feel like I need to get a shirt that says "DRINK AMANDA!!!" It would cut down considerably, my daily verbage. We have increased the doses of some of her medications, and we are seeing a decrease in her protein creatin ratio. I am feeling confident about this, because I trust that we will be able to raise the funding needed for the research to find a cure. The best health that Amanda is in, is in our favor if and when there is a procedure needed to be done to evercome this disease once and for all. A month ago, I was hit with a lot bad things from different directions. Few of you know this, but your prayers and support have kept me going and renewed my strength. Thank you to all who are working so diligently to help us raise some money to help cure Amanda. Everything that we can find and reveal about this disease, benefits so many (and especially my little girl.) I don't think you will ever know how much we need and appreciate you. All my love and sincere appreciation for the love support and prayers. Tracey

5/18/2005
Written by Amanda's Pediatric Nephrologist Dr. Peter Yorgin Lucille Stanford Children's Hospital Loma Linda Children's Hospital./////////////////////// Amanda is currently undergoing immunologic testing to determine if she has a circulating protein in her blood that is causing her recurrent focal segmental glomerulosclerosis. Recent testing has included identifying the proteins on the surface of her T-cells. T-cells are defense cells in the body that fight off infections. Some investigators think that T-cells secrete a protein that causes recurrent focal segmental glomerulosclerosis. Recent work by Dr Virginia Savin and others, however, have not been able to find a connection between T-cells and recurrent FSGS. Dr Savin is currently performing testing to determine if Amanda has the Savin factor - a protein found in the serum that causes recurrent FSGS. If Amanda has the protein, and her sister does not, Dr Yorgin will want to collaborate with other researchers to isolate the protein and determine it's source. Although this sounds fairly easy, it has been a daunting task. The isolation of the protein has evaded a number of excellent research scientists. Dr Jim Schilling at Stanford University has proposed using a new technique, proteomics, to solve the problem. Funding will be needed, however, to conduct the research. If you have an interest in helping Amanda (and potentially thousands of other children with recurrent FSGS) please consider donating.

04/28/05
Dear Loved Ones, Thank you to everyone for helping to contribute to Amanda's care and research. Even a dollar helps. We are very touched and appreciative. Amanda is feeling better after spending a total of three weeks in the hospital. It was pretty scary there for awhile and she was a very angry, hurt child full of despair. She asked again if I would just let her go live with Jesus, so the pain would all stop. She put a huge sign on her door that read "All pokers (lab people), nurses and doctors to buzz off and stay away. She was not going to let them put her on the pump, dig needles and I.V's in her or hurt her anymore!" Every vein was blown and they were placing I.V.s in her ankle and feet (pretty painful to endure and even watch it be done to her.) After her new chest catheter was replaced her I.V.s and labs could be used on one of those lines. I then suggested that her Note was not appropriate anymore, that she should make a new one that said how she felt. The next day when I came there was a new note on the door. It read " My name is Amanda, I have been hurt very much, but I made it through it because my mom and my gramma make me strong. I love my sister and my brother, but he is a pain. This wasn't exactly what I had in mind, but she had gotten the idea. She made lots of friends with several little girls her own age in the hospital (in fact one day when I went to see her, she had loaned out all of her socks and all theses little girls were walking around in Amanda's socks - the hospital provides booties.) Once her intense discomfort and pain had passed, she did not want to leave the hospital. She asked if she could just live there and have me visit everyday. She is out though, now and doing much better. I have to watch her constantly that she doesn't over do it, and to make her drink all the time. She has gained a little weight but is not getting any taller. It is very hard to find clothes that fit her and that she feels good about herself in. She and I both are having a hard time with dealing with our doctor leaving us this next week (it will be July before we can join him in Loma Linda) and because of our friend Kelly who had to have the rest of his leg amputated off last week. The cancer has spread through his whole body and he has less than a 10% chance to make it through the end of the year. He just celebrated his eighteenth birthday. I am devastated, for him and his family and for how close this hits to home. Amanda is angry that God does not hear our prayers. I have had to remind her and myself that when we trust in God that we do it through the good times and the bad. There are no promises and life is not fair. None of us know how long we have ourselves or each other on this planet. If we believe Jesus though, we know we will be reunited again.Besides, Kelly is still here and we are still praying everyday for a miracle for he and Amanda. Amanda has had to face that there is no cure (yet) for her disease either, but there are miracles, instantaneous ones and those that take medical help and time. We will take either. That is why the research for Amanda is so important. We feel like it is doing God's footwork. We know there is a blessing in all this, even when it gets so hard, that I feel like I can't breathe anymore, but I can and I will. We will perservere. Please help us and our friend kelly to do this. Pray always for us. God hears every single prayer. All my love, Tracey

03/30/05
Dear Family, Friends & Prayer partners, > >Please esp lift Amanda & Tracey in your prayers; they are at Loma Linda >Pediatric Hosp. in Loma Linda Ca. where they & Amanda's twin sister had >gone on Angel Flight Mon. for tests & evaluations prepatory to moving >there this summer for research & ongoing treatment, by the Dr. who has >been treating Amanda since all this began.He is moving there. > Amanda was in ER all yesterday & now is in pediatric ICU. She is >septic (blood poison) from her catheter(?), & they have been unable to >get her potassium level down despite the use of steoids & insulin. The >BP of 80/30 endangers her for a heart attack and the persistent 104 >degree temp is very dangerous for her. Morphine has eased the pain >some, but she is in & out & halucinated thru the night. >Thank God for His mercy in sending loving & devoted family members in >the area to rally around them, and for Dr's & nurses who are treating >Amanda with the best they have. Tracey is just overwhelmed at the >crises level that escalated so quickly, in a strange place with people >unfamiliar with Amanda, but the level of care & expertise have been a blessing. >Her regular Dr. at Stanford was on the phone most of the day with the >Pediatric Dr.s at Loma Linda, & even getting her a bed in ICU was >somewhat of a miracle. >Please lift us all as we try to get Jessica home and retrieve Jacob >from our son & daughter-in-law in Grass Valley & back to Stanford, as >spring break ends. I will be staying there with them until Amanda is >able to be airlifted back & she & Tracey can come home. >Thank you for every single thought, word & deed during our time of need. >Love Pat >

03/10/05
Hi Everyone, Amandas numbers are looking good. She is still battling the migraines and the new medicine makes her bruise terribly, but all in all, she is doing well. Even though our doctor is leaving in May, we are still actively pursuing a cure for Amanda. It has been suggested that we are dealing with a stem cell disorder, and it could be remedied with a bone transplant from Amanda's sister. The problem that we have encountered is that there is so little information on the rare strain that Amanda has of this disease, as well that there is no evidence that this course of treatment has ever been done for these purposes. There is a lot of research that is still needed. We have been put on hold because they said it would take one to two years to write and obtain grants for this research. This is a true opportunity to find a cure for Amanda and many other people that have this disease. There is no other case study of a patient with an identical twin having this disease and the twin not. Our docotor is contacting NephCure abput research funding and we are searching for anyone else we can think of, trying to find funding. I was told that if we can obtain the ($100,000) by other means, we could start immediately, and have a better chance of saving Amanda's new kidney. We are open to any and all suggestions from anyone or organization that can contribute any or all of these funds or how else we might obtain them. I am really praying about this. It is a large amount, but not unachievable. Jessica, Amanda's twin, could be the key to saving Amanda as well as so many others. We are excited about this and are appreciative of any and all help given, of any means. We are still planning on following our doctor to Loma Linda Children's Hospital. We have heard many good things about this hospital. Our trip to visit had to be postponed until the end of this month. It is a scary prospect of moving again, and all three kids are not happy about it, but it really feels like God is leading us in this direction. That in itself takes the fear out of it. It makes me remember that we are to "Live in tents," and the birds not worrying about their shelter or next meal. God has blessed us and taken care of us, and I trust He will continue to do so. Pray that we can otain this funding now, instead of waiting a couple of years. Pray that we can rescue Amanda as well as so many others from the grasp of this terrible disease. Help us to keep fighting the good fight. Thank you for your emails, strength and prayers. All my love, Tracey

02/07/05
Hi Everyone, Amanda is doing well. She still gets bad headaches and is having some blood pressure issues. We are just glad to have her out of the hospital and at home with us. My mom came down and spent a week with us. She was a true life saver! I thought I had it all together, but I it was becoming bigger than I am. She really gave me a chance to rejuvenate and rest. I want to thank everyone who offered to come and help me. You know who you are. It is very hard for me to accept help, even when I am drowning, but the Lord is giving me lots of opportunity to give up that pride and accept the help when needed. Thank you to those of you who stepped up and offered to be there for me. I am blessed to have you. The kids and I will be taking a trip down to Southern California this month. We may have to consider relocating to that area to follow the continued care with one of Amanda's docotrs. We pray for wisdom and insight in this decision. But as for Amanda right now, we will keep fighting the good fight! She has a protein creatin ratio down to an 8.5. Although, this isn't good, it is better and I'll take it! She is playing and singing and back to her goofy self again. We are grateful for the big and the little blessings. My love and appreciation to all of you, Tracey

01/28/04
Hi, It has been a rough week. Amanda had an emergency biopsy on Wednesday. Thankfully, there is no rejection. The FSGS is just taking over. She continues to be spilling enormous amounts of protein. She wasn't pheresed for several days because of her on again off again fevers. We think she caught a bout with a 24 hr. flu while she has been admitted, explaining all the vomitting and high fever we had on Monday. The poor thing is very puffy and woke up two days ago with herpe blisters inside and outside of her mouth. They were worse this morning, making it difficult for her to speak, let alone eat and drink. She is very depressed on top of this after finding out that she would not be performing her solo song of Delta Dawn in tonight's talent show at her school. I was holding off telling her that they were keeping her longer to give her a full 10 days of antibiotics. She confronted the doctor yesterday. who unknowingly spilled the bad news. She called me hysterical. Thankfully her teacher is taking Jessica and Jacob overnight tonight, so I can stay with Amanda. So , many parents have been wonderful in offering their help. I have difficulty accepting help from anyone, although I did pray for some sort of support system, when we moved here. This week has been unbelievable, from hiding the other two kids in the shower when the nurse came in, so we could stay the night with Amanda when she was so sick, to me catching the flu from her. I have been forced to accept help, and I am very grateful to everyone who has offered. Hopefully, Amanda will get out of the hospital in a few days, and start feeling better. I am hoping that by getting back on our phresis schedule we can get some of this fluid off of her too. The new medicine she is on is already starting to create the massive hair growth that I was told about by another patient. We will deal with that too. It breaks my heart to see her going through all of this again, but she will survive. We all will. I am just trying not to drop the ball with Jess and Jake too. This is hard on them. They have missed several days of school this week, and Jacob's teacher called to see if I wanted her to bring him home. He had told her I was almost too weak to drive him to school. I was sick, but that made me sound pathetic. We are not there yet! All in all we are doing okay. We just need Amanda home with us so we can lift her spirits. We are all better when we are all together. Thank all of you for your love, support and prayers, (even when I say NO, I appreciate you.)

01/24/04
Dear Family & Friends, Please lift Amanda in prayer - she appears to be experiencing rejection of the kidney. She was admitted to the hosp. last Fri with fever, vomiting & pain, but seemed better after antibiotics. Today her creatin level has jumped dramatically with another spike in temperature, she is still throwing up, is disoriented, and lapses into deep sleep - all signs of rejection. Her kidney function has been decreasing, but the current events are critical. She will be put on strong imuno-suppresent anti-rejection steroids tonight & Tracey is very anxious about this - There are serious side effects. Please keep Amanda & Tracey & the other two children in your prayers, especially through this night and the coming days. God knows best how to care for His own, and He has never left us alone or withouth hope. We covet your prayers to lift us up in this conviction. Thank you. Love, Pat

01/23/05
Hi, Quick update. Amanda was admitted yesterday (Friday night) after her phresis and IVIG treatment. Her cultures from the night before came back positive for a blood infection. It was a very hectic day after picking up her brother and sister from school, going home to pack her things and then returning to the hospital to be admitted. They did not have an open room, so she was put in the observation room. I am very grateful that her infusion of Vancomycin went well, especially since I could not stay all night with her in observation and needed to take her brother and sister home. Usually Amanda reacts terribly to the Vanco. We have now recognized that she is allergic to Benedryl as well as many other things. They were using it as a premed and Amanda was very (very) uncomfortable. Slowing down the rate of the Vanco and giving her Aderex instead, worked much better. The doctor said the infection probly had something to do with why her protein creatine ratio was so high yesterday (18.9.) She is up and about today feeling good. She is writing the nurses all letters and drawing them pictures. It is a good thing, but sad as well, how at home Amanda is in the hospital. It has become her second home. We just hope they can clear up this infection without having to replace her catheter, and she wants desperately to be out of the hospital before her singing performance in the talent show next Friday night. Thank you all for your continued prayers. Tracey

01/20/05
Dear Everyone, I want to thank everyone for the wonderful emails that we continue to get from people who want more information, to people , family and friends that have good thoughts and continued prayers that they want to pass on to us. I apologize for not responding lately. I have beaten myself up over it for awhile, but the truth is, that there has just been so much going on. Some things I can't share at this time, because I was privvy to information that others haven't. But know that it has created a lot of stress and upheavel for me. Amanda's kidney function continues to decrease as the FSGS scarring is starting to take over. We were at the hospital last night until 10pm, getting Albumin infusions, because Amanda had caught a cold from her brother and was running a fever and dealing with vomiting. We are still fighting migraines, which at time are unbareable for her. Recent labs between her and her twin, Jessica confirmed what we already knew, that they are identical. We are in the process of starting gene studies on Amanda and Jessica's blood syrum, bone marrow and the plasma taken during Amanda's phresis treatments. We have also, switch from Prograf to high doses of Cyclosporine with Cell-Cept, hoping to decrease the amount of protein being released. The idea was brought up that maybe the part of her body that is producing this protein that causes the FSGS, is recognizing the phresis constantly eliminating it, therefore, it is working harder to replace it, creating a "loop" effect. I am very excited about the gene studies that will be taking place. I know there has been research in this area before, but never with an identical twin to compare to. Amanda cried when she heard of all this because she knows there are needles involved and doesn't want Jessica to be hurt or scared. She amazes me, that all of the horrendous stuff she has endured, but is still aware of how it feels to be scared and afraid of needles, and how Jessica will feel. Jessica is scared, but wants Amanda to be well. God has blessed me with some really amazing kids. Keep us in your prayers. Pray for perserverence and the faith and hope that we can find a cure before Amanda loses her new kidney. It has only been a year since her transplant and we are down to 75% kidney function. God bless to all of you and your contined thoughts and prayers. I really do appreciate it all. Love,Tracey

12/16/04
Hi Everyone, Merry Christmas to all. Amanda is on an increased amount of meds, but they seem to be giving her some relief from the migraines. Last Sunday, she crashed her bike (hit the front brakes instead of the back) into the house. She hit a brick corner on the side of the house, making a little hole in her lip (that she kept sticking her tongue through.) The big scratch or cut down the center of her chin is what upset her the most. She was afraid the kids would pick on her at school. I don't know how she would know if they did, because apparently her new medication makes her sleep through the school day when she is there. Anyway, we made a trip to the ER, and fortunately, they glued the hole back together. Amanda was very concerned about how it looked, so when took her to treatment the next day, and then went to get some coffee, she talked a nurse out of some of her face make-up to cover up her wound. It had absorbed into the adhesive used to glue her back together again, and now looks like she has mud smeared on her chin. I tried not to laugh for fear that she would cry. I think she felt better just knowing that she had gotten away with wearing make-up. Amanda's protein creatine ratio seems to be coming down some again. There seems to be no rhyme or reason as to why it goes up and down. I wish she felt better on a regular basis, but I take what I can get.We are all very excited about spending the holidays (Amanda and I will go for two days) in carson City with my folks. We can't wait to play in the snow. God Bless to all of you, and thank you for your continued prayers for my family. Tracey

12/06/04
Please continue to keep Amanda in prayer, esp for relief from the pain of a "migraine" headache, which she has been dealing with since before Thanksgiving. She is out of the hosp. but still on the strongest meds. they can give her, without much relief - the pain level stays at a 6-7. Tracey says she is grayish-pale, lethargic & very emotional, but still tries to participate in whatever is going on at home. She has been unable to attend any school & doesn't even want to go to the craft room at the hosp. - something she loves. We know that God has a plan for her, and there is a reason for all things. We ask your prayers for her deliverance from the pain and sickness, and for the rest of us as we watch her suffer. Thank you. Love, Pat

11/27/04
Hi Everyone, Amanda was admitted to the hospital yesterday. She had caught whatever her brother and sister have had (coughing, snuffy nose and sore throat.) However, she was running a temperature that kept getting higher and was very chilled. Thank goodness a chest xray revealed that she did not have phnemonia. Being Thanksgiving weekend, my folks were here, so I was fortunate enough to be able to leave Jess and Jake with them, and spend the night at the hospital, with Amanda. She originally told me that she did not want me to stay, that I always have big black circles under my eyes (she doesn't know these are permanent) the next morning after sleeping in the hospital. That she was watching TV and that I shouldn't come back to the hospital. I called her an hour later to check on her and she was almost hysterical. She had forgot our home number, and left 5 voice messages for me on my cell phone begging me to pick up the phone that she needed me. It was enough to make me cry. She said she had told me not to come back to the hospital because she was trying to be grown up, but that she wasn't and needed her mama. Needless to say, she had a rough night and I was very glad that I could be there. My folks had to leave today, so I am not sure what will happen tonight. I can't leave Jess and Jake alone over night. I will put it in God's hands. I am hoping that Amanda will be okay now that her fever has broke and she is feeling better. If we can get a nurse that she knows (and we know almost all of them by now,) she will be okay. We will get back her 48 hour labs tomorrow. If all is well, they will release her tomorrow. Jake and Jess are being good. I think they understand without being told, how hard this is. They pitch in and do whatever is needed when it comes to Amanda and her health. I truely have been blessed. Please keep Amanda in your prayers for a speedy recovery, and so she can get back to her pheresis treatments. They are the only thing that seem to keep her disease in check and from progressing any further. My love to all, and hope you had a wonderful Thanksgiving. We have a lot to be Thankful for, Praise God, He is good!Love,Tracey

11/19/04
Dear Family, Friends, & Prayer Partners, Amanda's biopsy was done 11/15/04 & showed markers of FSGS on 5 of the 9 cells tested. The new kidney is not being rejected, but is being attacked by the disease (FSGS) that destroyed Amanda's own kidneys, & is still in her system. She is now on faresis 3 x's a week, but the blood creatine level continues to climb, indicating the current drugs are no longer working. New drugs will be tried, but with little confidence, since nothing to date has stopped the progress of her condition. A bone marrow trasplant is under consideration, using her twin sister as a donor; however, the risks to Amanda are extreme, the outcome a long-shot, and the side effects of the procedure are terrible. More research has to be done, and time is a real factor, as we are running out of any known options. As always, Amanda is an amazing little girl. Having her sister & brother living with she & her Mother and going to school 2 days a week has been like Christmas for her. She is sick often, & takes some teasing from schoolmates for being "fat" and having bushy eyebrows & yellowed teeth (the steroids) but she does not give up or give in - she 'trimmed' her eyebrows & tried to whiten her teeth. She is artistic and imaginative & loves to 'create' out of the most outlandish things, but she is also wise beyond her years & doesn't focus on the pain or illness. Her spirit gives us hope. Please continue to keep Amanda & Tracey and our family in your prayers. More than ever we know our answers lie in God's hands alone. Your love, prayers and support hold us up in the lowest times and encourage us always. Thank you. Love, Pat

11/04/04
Hi Everyone, The family has been fighting a nasty cold, as of lately. Fortunately, Amanda has not seen too many symptoms of it. I was informed today as we showed up for Amanda's treatment today, that there had been doctor's orders to put Amanda back on phresis 3x a week instead of the 2x a week we have been doing. Apparently, Amanda's protein creatin ratios, continue to increase (ratios of 7.4 vs. 2.5-3.) I am not sure if this is because we went to 2 plasma exchanges 2x a week instead of the 1 plasma exchange 3x a week, or if she was doing better upon finishing up her Cytoxin doses, and it is just out of her system now. We did go to the Cellcept then on to the Rapamune. The steady increase in the protein creatin ratio has had me very worried, as I track it regularly. Amanda's hematicrit levels continue to decrease (meaning she is producing less blood cells on her own.) They continue to increase her epogen levels, but it doesn't seem to help. Amanda is very pale, and has encountered some teasing in school, because of it. My first reaction to tell her verbally to attack these children back for their absolute stupidity and ignorance. However, children can be very cruel. It is so hard to teach your child to treat people with love and understanding, because that is the way we want to be treated. Sometimes, Amanda is a bigger person than I am, and reminds me of the things that I try to instill in her and her brother and sister, even when I am having trouble with these things myself. I am still waiting for the doctors to come back to me on the bone marrow transplant thing, from Jessica to Amanda. Amanda and I have discussed it briefly, leaving out the risks involved. She amazed me after I told her of the suffering involved with having Chemotherapy. She said "Let's do it, Now, as soon as possible." I asked her about finishing out the school year. Her response was that she was tired of living like this, that she wanted to go swimming, that she wanted to get this over with and get on with her life. I am not sure if I could forgive myself if we make the decision to do this, to give her a better, longer life, then lose her life all together. That is a very real risk with the bone marrow transplant for a kidney transplant patient. What they are proposing to do has not been done before. They would need to get approval for it. I just don't know. I do know, that Amanda is not getting any better. As always, please, pray for Amanda, the doctors, myself and our family. Tracey

10/14/04
Dear Family, Amanda is doing well in school. She was out sick with a cold after going for the first few days. I think we were all holding our breathe to see if this was going to be an on-going thing, and that might not be able to return to regular school. She is doing fine, now. I have had to talk to the teachers, though. She is over doing it in P.E. and it is really wearing her down. She is very anemic and is needing an increase in her Epo to create the blood cells that she is not. We were told on Monday's clinic appt. that Amanda can be seen once a month now, instead of bi-minthly. Amanda will have a kidney biopsy sometime this next week. We hope to discover then that the FSGS has not progressed and caused any further scarring of the new kidney. Getting Amanda to drink her fluid level, has been a huge challenge and a constant battle between she and I. Some days she can obtain it, and other days she isn't even close. We are always fighting dehydration. Amanda is very excited that the doctor has allowed her to change a pheresis treatment next week in order for her to go on a class field trip to the Pumpkin Patch. This is a really big thing for her, and I am very pleased she can participate. The doctor and I have discussed testing Amanda and her twin sister to confirm that they are identical twins. There is some consideration of doing a bone marrow transplant from Jessica to Amanda, if they are identical. There is no documentation on this being done before, and there is risk involved. The thought would be that if everything was in order, that this procedure would rid Amanda completely of the FSGS, and any need for treatment of the disease. The concept itself is very exciting, but concerning as well. It may be a future consideratiion after in depth testing and investigation. In the mean time, Amanda will be switching from the Cell-Cept she is currently on, to Rapamune. Her urine protein creation ratios have maintained around a 3. I know the doctor and I would like to see them close to a 1, but for now they are pleased that she is being maintained and doing well. Besides, Amanda's current anemia and being over fatigued, she is very doing well. She is starting to get the hang of school, and not being so down on herself about being behind the rest of the kids. Her new school has been very supportive and helpful in trying to get her on track. Just having her brother and sister near her, has been huge for her. I had forgotten about how important being "popular," liking boys and what who said to who, is to a ten year old girl. Somedays, I wonder if she has been drinking coffee. She can talk so fast and non-stop about theses things without taking a breath. I am thrilled that Amanda is being able to experience (for the most part), what normal ten year old's go through, and having her twin to experience it with. It makes me a little jealous that I never had a twin. They spend hours laughing and playing and giggling about I don't know what. We truly have been blessed. Amanda can ride her bike, and live at "home," with her family. I was never sure if that was going to happen again. We miss our family and friends in Carson City, but have made a new home here and sarted attending a new church. Thank you to everyone who continues to pray for Amanda's recovery (and my sanity.) I am certain that your prayers are being answered! All my love, Tracey

09/15/04
Hi Everyone, Good news, Amanda is being allowed to return to school on the days she does not have treatment. She is still triple immunosuppressed, but the doctor felt like, so far the extreme concern has not panned out. Amanda "cannot continue to live in a plastic bubble." It goes without saying, that Amanda is estatic. Her frequency of aphresis has been reduced to 2x a week, but the treatments are being intesified with more plasma exchanges. We have stopped the Cytoxin, because Amanda has reached her dose limit. It is being replaced by Cellcept, then Rapamune. The drugs haven't seem to have had any impact on the disease, thus far. The phresis is the only thing that seems to control the disease. Amanda's body reacts strongly when she does not get a treatment (negatively.) Even though we haven't had a positive response to treatment (as far as a remission,) we are treating her return to school (three days a week,) as a huge success. The fact that she won't be wearing the big pink mask is cause for celebration. The main concern will be if someone comes to school with Chicken Pox. Amanda had Chicken Pox three times as a child and was immunized for the virus, but is still very susceptible. The kids are doing well in our new home and we are starting to settle in. We are getting involved (when time allows) at a local church. All in all, things are good. Amanda has been in the hospital 2x this month for terrible migraines. She has been put on different drugs, but seems to be doing better. She still experiences constant low grade headaches, but is able to endure them and they don't make her sick to her stomache. She is an incredible kid. She is very happy to have us all together again, although having to accept that Jess and Jake are not here for a visit and leaving soon, so she can have me all to herself again. Thanks to all of you who continue to support and pray for us. Your donations have been very appreciated and a God send. Thank you. Tracey

09/02/04
Dear Everyone, Life is fast, exciting and new after moving the other two children here, and all of us finding a new home. We truly feel blessed in the home that the Lord has provided for us. It is different from what I thought our needs would be, but has worked out perfect. Jake and Jess have started school with much anticipation and fear. I think they both will do well. Amanda has had a hard time not having my complete focus now. I purchased her a lunch box before school started, when I got her brother and sister's (for preparation of when she can return to school.) She spent a couple of days in the hospital last week, but was let out, because her symptoms come and go, and hospitalization did not seem warranted. It was also, very difficult that this was the first time in two and a half years that I could not stay the night with Amanda in the hspital. I had to return home each night with Jessica and Jacob. Amanda called a couple of times crying, because she missed me. It made me ache, but I had to distract her with all the things I would be bringing to the hospital to her the next day, and I would be there bright and early. She is a very strong little girl, and brave too. We are being referred to neurology again, today. She still continues with bad headaches that come and go, as well with vomiting several times a day. It is hard to pin point the problem, because even with a headache, Amanda continues to play and battle with her siblings as if she feels fine. When the pain gets overwhelming, she throws up. The medicine that is suppose to help also, bottoms out her blood pressure, which creates new problems. Hopefully, neurology will determine if she is actually having migrains, and a better way to treat them. As it is now, Amanda is required to drink 2.5 liters a day. This is a huge struggle and we are clearly losing ground if she is throwing up. Prior to this last hospitalization, it appeared that we may be seeing signs of a remission. This was very exciting for me, because I am constantly tracking her labs, and trying not to get excited over lab "glitches." Her protein creatine ratios were in the area of the two's. We are back into the fours again, but I am hopeful. The Cytoxin Amanda is on, had to be stopped while she was in the hospital, because her red and white counts got too low. We are about to finish up this course, so I was glad to see that the levels became normal again and we could resume. Amanda should finish the Cytoxin in the next two weeks. There will be a biopsy within a month following to reveal the progression, if any of the FSGS. Please pray with me that Amanda has achieved remission by this point and can maintain it with less aphresis. We will be reducing the frequency of her aphresis at this point along with the Cytoxin. If all goes well, this will make Amanda less immunosuppressed and she can return to regular school. Until that point the school district will send a Home School teacher in for a few hours each week. Amanda wants more than anything else, to return to school with other kids (and use her new lunch bag.) Thank you so much to our church in Carson City for all your help with our move, and Richard Baldwin driving to the Bay Area to deliver our things and unload them. I really appreciate all the love and on-going support that you have provided us with. Please pray for Amanda. Tracey

08/05/04
Dear Family, Amanda feels good and looks great. She has more energy than I sometimes would like. She still continues to be pheresed 3x a week, keeping her immune system extremely suppressed. We had a clinic appt. this moring. Amanda's labs look good, and her blood pressures have been wonderful. It seems that she is on less medication than she has ever been, since this all started 2 1/2 years ago. Her red blood cells are great and she has been reduced to 5,000 units of Epogen 1x a week. She completed her 8 course treatment of I.V iron and still recieves I.V.G. once a week (immune sytem boost of antibodies.)We still hope to bring her protein creatin ratio lower, in order to save her new kidney. We seem to have plateaued at a level between a 4.0 and 6.0 . We need her levels below a 1.0 . It bounces back and forth. We did get a level of 3.13 yesterday, but the doctor doesn't feel this is accurate. We are two thirds of a way through her course (150 days)of Cytoxin. It should be finished up in the first part of September. The doctor is hopeful that it will still put Amanda into remission. The plan is to do another kidney biopsy around Sept. 6th, to find out the effects and progression (or lack thereof) of the FSGS. My 3 children and I, will permanently relocate ourselves here, to California in August. I am still hopeful that Amanda will be put in remission, and return to public school sometime, this next school year. There have been times I have felt like Job in the Bible, in the last month or so, but have been so blessed lately by all the people helping us to get moved here. Friends from the church came and finished packing our house up, moved it to a storage unit, then others were back the next day to clean. The people involved in facilitating our move to California, have bent over backwards to be accomodating. We have just found out about a smaller service on Sat. nights at church that the doctor says that we can attend here. I still kick myself that I worry and get overwhelmed, then how the Lord blesses me in abundance with the people he places in my life. Girls from my college softball team put together a humongous box of school supplies for the kids and goodies for all of us. Thank you to all of you, for your continued support and prayers. Carson City is our home, and the kids nor I, want to leave. But the decision was taken out of our hands. I just hope we can meet as wonderful people here, as those we are having to leave behind. My love to all of you, Tracey

07/09/04
Hi Everyone, I knew it was time to update, but I haven't much new news. Amanda's siblings have individually come to spend some time here with us. It has been great for Amanda to be able to forget about her treatments, her medications and everything that consumes our everyday life here. She has just played and been a normal little girl. She still does three different kinds of treatments three day a week, but otherwise is consumed with competing, arguing, playing and laughing with her brother or sister. Amanda's health situation continues to stay the same, but has not worsened. We are very grateful for that, and the fact that she looks better and feels better than she has in a long time. Having her brother and sister around seems to be just the medication that she has needed. The doctor does feel that she has lost muscle strength throughout her illness, which is causing some weakness and fatigue, but it is something we hope to remedy over time. We are in the process of moving our family (my children and I)to California right now, to be permanently closer to Amanda's care. It is stressful trying to find a new place for us that is clean and safe, as well as move ourselves from carson City. I know that God has a plan, I just hope he reveals it to me soon. We are getting down to the wire. Thank you, to all of you who continue to support, pray and think of us. You have fought this fight with us, and I hope we can continue to count on your strength, support and prayers. Special thanks to our family(immediate and extended,) our church, friends, families that we have grown to love that we have met here at the hospital, and all the numerous strangers who have reached out to us. All my love goes out to you. Tracey

06/23/04
Dear Family, Friends and Prayer Partners, Amanda had a new catheter inserted in her chest last week after the old one failed, and as always the surgery was very hard on her. She initially told her mother she simply wasn't going to do it, it wouldn't help anything, nothing seems to make her better & she was just ready to go live with Jesus. She hates all the scars on her body & is so self-conscious about the mask she has to wear out of the house. After Tracey reminded her of the swelling and pain that occurs when the catheter stops working, she agreed to the surgery, but was very nervous & scared. She made the comment she should be used to it by now, but isn't. The day of the surgery she was extremely agitated, but delined the meds to sedate her. When a young nurse she is very fond of came to wheel her in, she insisted on walking to the OR, took the nurse's hand, walked down the hall, thru the doors, climbed up on the table, put the stickers on her chest & lay down. She was pale and shakey & tears were in her eyes. She is my hero & shows us all what true courage is. Please continue to keep her in your prayers. Love, Pat

06/17/04
Dear Loved Ones, we are here at the hospital again, waiting for Amanda to go back into surgery, for a new catheter. Her existing one has stopped working again, causing her pheresis treatments to be ineffective. Amanda is a tired little girl. She said she is not going to have another surgery! That her body belongs to her, and that she is tired of being cut open, and having things put in or taken out of her. That she is 'done.' While I understand and completely sympathize (even ache) with her, I have to encourage her to try. I had to remind her of what will happen to her body if we don't try (extreme nephrotic symptoms of puffiness and pain.) I am be open with her, and tell her that we still don't know if it will work, but that we still have to keep trying. She is a survivor, and agreed. We have been told that within the next three months, that we will have to seise the Cytoxin. That we can not continue to suppress Amanda's immune system at the frequency that we have. I am not willing to try the alternative toxic medications available, that can and do cause cancer. There is no reason to believe that Amanda will respond to any medication at this point. She has been completely resistent thus far. If we can't get Amanda into remission and keep her there with less treatments of plasma phresis in the next few months....we will lose her new kidney. Amanda's greatest fear is that her dad would be mad at her for losing the kidney he gave her. It took a heart wrenching discussion, to make her understand and believe that her dad loves her very much, and that would not be the case. That none of this is her fault, and that no one will be mad at her. That we hope this won't happen, but if it does, we won't give up. We will just try a different path. Amanda is strong, but.... oh so tired. Please pray that the Lord gives us perserverence, peace and endurance for the road ahead. Pray that we continue to trust Him, and that we pray for His will and His glory, always. Tracey

06/04/04
Please keep Amanda in your prayers for her surgery today at 1:00 to insert a new catheter for the faresis 3 x's a week. They went in at 9:30 for Pre-op & will probably stay at least overnight. Amanda was in such good spirits today, and that was our family prayer for her last night. She asked me for $20.00 this morning (or $2.00 would be OK) as she is saving for a car or a pet. She also said she plans to be a nurse or veterinarian when she grows up, to pay for the gasoline or pet food, whichever she decides on. Hearing her own hope for the future gives us hope. Thank you for your prayers and support. Love, Pat

06/02/04
Dear People, We are in a holding pattern, but Amanda is out of the hospital as of last night. Her blood pressures ranged into the 190's/118 & have come down to a normal range, yet bounce for unknown reasons. She stays exhausted, pale and weak, & a new catheter seems inevitable. She is still getting cytoxin (chemo) and faresis (blood cleansing) treatments, though her creatin levels continue to climb, an indication that the kidney is dumping protein. She and Tracey are talking about finding long-term housing in the area & having Jacob & Jessica move over with them. It gives them hope and something to look forward to. If they can manage for even several years as a family together instead of fragmented, it will be good. Please continue to keep us all in your prayers for the strength, wisdom, faith, and hope that can only come from God.Thank you, as always. Love, Pat

05/26/04
Dear Family, Friends & Prayer Partners, It has been a long time between updates, with the hope better news could be given. We are still in the throes of fighting for Amanda's life and health. The disease has begun attacking her new kidney, though thankfully, the kidney itself is not being rejected. The pharesis, prosorba, steroids, cytoxin & other treatments do not seem to be working, & options & ideas are running out. The Dr's don't give up, nor do we, but human knowledge & experience are outmatched at this point. Sunday Amanda was readmitted to the hosp. with severe head & back pain. All possible tests have given no clue to the cause & she is still on a lot of pain meds. with dangerouly high blood pressure. Please continue to lift her in prayer for healing, for peace and faith, and the sense of God's presence and grace always with her. She is a very scared, worn out little girl. Her sense of humor and fighting spirit are at a low point, but still there. I would also ask your prayers for Tracey as she deals with exhaustion and bewilderment, and for all of us as we continue to bear the separation and concern. Thank you for all your support. Love, Pat

05/24/04
Amanda was released from the hospital Saturday night after a pheresis treatment, but readmitted Sunday morning after being up all night with horrible back pain and a severe headaches. Yesterday (Sunday), she had a CAT scan, MRI, and two spinal taps. Amanda had to be put to sleep for the second tap, because the first was too painful, scary and was unsuccessful. All tests came back normal. This is a good thing, in that many bad things have been ruled out. However, she has had to be maintained on a PCA (constant drip) of narcotic, to make the pain bareable. Amanda's back pain is better, except where they did the spinal taps, but she needs continuous medication to cope with the head and neck pain. Neurology and pain management have been brought in to help with this new onset of problems. They are starting her on a non narcotic pain medicine, to help the nerves. I am glad that they are dealing with her pain, but I am anxious to resolve the cause, as well as the symptoms. Amanda's doctor, Dr. Yorgin, continues to be our rock. Please pray for Amanda's relief, and the cause of her pain, as well as a full remission from her disease. All my love to all of you, Tracey

05/21/04
Hi Everyone, Amanda was admitted to the hospital on Wednesday. We were already there on an out-patient basis to recieve her weekly Prosorba treatment. She wasn't feeling well to start off with, but, these treatments are neccessay. As her mom, it is hard for me to tell sometimes if she is sick or just not feeling well. She doesn't recieve the pheresis treatments if she is sick. The lab sent an alert out, at the same time informing the nurse that Amanda's white blood count was dangerously low at a 1.2. The doctor cancelled the treatment upon hearing this and had Amanda admitted and started I.V. antibiotics as a precaution against an infection. in her body. Amanda is in good spirits. She was initially very angry about being readmitted, and recieved sedation medication for the intense antibiotics she was about to recieve. It was best that everyone let her be. Sedation increases the effect of Amanda's displeasure intensely. She is fine now, and feeling better. She made one of the nurses a popsicle stick boyfriend, upon request, and named him Dr. Fox. She amused herself yesterday, by making dolls with pretty outfits on the front of them and drawing "derierres" on the back of them. She has a lot of fun at the expressions of peoples' faces, who discover this on their own. This is a hard way of life to live for her in general, but when it seems that she is forever extremely immunosuppressed, life becomes a lot more limited. Right now, she is classified as being as suppressed as a bone marrow transplant patient, and the mildest "bug" could be very dangerous to her. We are still hoping for a change for the good in things, and if nothing less...a miracle. Thank you for your love and support. It's all Good! God is good and blesses us daily. He is teaching me patience, although you would think I would be Ghandi by now, but I am not! Tracey

05/07/04
Dear Family, We had clinic yesterday, and had thought we were doing well up until that point. The doctor was concerned that Amanda's protein creatin ratio had not dropped lower that the 5.69 at a quicker rate, since we pherese twice a week, and have Prosorba and IVIG once a week. We are going off Cellcept, which is a drug to fight against kidney rejection and starting Cytoxin. They feel or hope that the combination of phresis and Cytoxin will put her in remission. They said we can't continue to pherese Amanda at the rate they have, because of the long term effects to her immune system. If she is not in remission, I don't know what the alternative would be, and was not given an answer. Amanda is feeling well, but has little stamina due to the exteme anemia. They have doubled her dose of epogen, which helps her body create red blood cells, and did not give us a time reference as to when she could stop wearing the large hepa filter mask. We are always hopeful that this will turn completely around. The doctor's concern yesterday, though was disconcerting. I try not to read too much from their mannerism or sometimes, vagueness. I know they are doing all that they can at this point. I am just always looking and expecting things to get better, faster (I guess, as they are.) The Lord continues to teach me patience. Please keep praying, I know it helps. Tracey

05/04/04
Hi Everyone, Amanda is feeling well. We were able to take a weekend trip home to Carson this last weekend. It was a great weekend, and enjoyed by all of us. Amanda's spirits were lifted ten fold. She and her twin were inseparable. It made me even more aware of how much we miss home. Amanda's treatments of plasmapheresis seems to be working, as her levels are coming down. Hopefully, we will obtain a protein creatin ratio soon, that will be an acceptable level. Then we can start reducing the frequency of treatments. We are optimistic! The weather here is beautiful. However, when Amanda isn't recieving treatments, we are going stir crazy with keeping her isolated. We went to the park today, but left when the mother, of the child Amanda was playing with, said she had a cold. It is difficult, because I don't want to inform everyone we come across, of Amanda's condition, and outside is the only public place Amanda can be without a mask (and look like all the other kids,) but we still have to be so careful with her immune system. We either take drives or go for walks. I am grateful that we can do these things, though, instead of Amanda being in the hospital. Please continue to pray for us, as so many of you have! Tracey

04/23/04
Dear Friends and Family, I feel like I need to add an update, but I am not sure what to say. Amanda seems somewhat stabilized. She continues to have Plasmapheresis 3x a week, along with immune system treatments (IVIG.) One of those sessions is Prosorba Column A. I wish I could explain better what that is. It is suppose to be easier on her system than fresis, by removing a particular element or protein. It filters differently than the fresis, which pulls everything out of Amanda's blood, good and bad. Amanda is weary and is tired of being cooped up and isolated from everyone else. We go to the park, often. This is one of the few places where she doesn't have to wear a large mask. It gives her a chance to look like everyone else and play. We can't go to public places; stores, restaurants, or interact with our friends that are either in or out-patient at the hospital. We have moved out of the Ronald McDonald House. The house manager had issues with consistency and Amanda's housing needs as a result of her medical condition. It became more of a hassle than it was worth. We are fortunate to have found a Host Home on such short notice. It is very small, but gives us a place to sleep, without the extra added stress that we had been experiencing. I have started to look for an area here, to relocate to. Obviously, Amanda's care is going to be an on-going thing, at this point, and we need to live in close proximity to the hospital. Amanda is having a difficult time with this. She is very angry, especially with me, for not telling the doctors that we are "done," and that I am taking her home. I would love to give her what she wants and take us both home. That doesn't seem to be in God's plan, though. This is where we need to make a new home. I, like my family, wonder how I am going to take care of my other two childrens' needs as well as Amanda's. It is a little overwhelming to think about right now. However, I feel that it is God's will for the children and I to stay together. God will provide a way for me to provide for all of us. Amanda and I are excited about having the four of us together again. My parents will be greatly missed by all of us. All that I have been able to do for Amanda is only because, of them. It seems we are all heading into a new season of things. I am optimistic that our emotional quality of living will improve. I want to express again, how touched I am by all the love and support for us that has flowed out through our local community and churches. So many of you have stood behind us, through all that has happened. Thank you again and again. We are very grateful. We also, feel blessed that one of the links on this site, NephCure, has featured Amanda on the front page of their website. We hope this encourages and informs other families, whose children are experiencing the horrendous symptoms and lifestyle of this disease. For anyone needing more information on the disease of Nephrotic Syndrome, FSGS, I hope you will find the site informative. My heart and prayers go out to you. All my love, to all of you. Tracey

04/13/04
Dear Family, Friends & Prayer Partners, There is no change in the doctors' knowledge of how to treat Amanda. Her labs still vary from one extreme to the other in a short time, and she has lost approx 17% kidney function. She gets faresis 3 times a week, which makes her sick, and the steroids cause swelling, so she is uncomfortable most of the time. We were able to spend Easter with she and Tracey at Stanford, & being with her sister & brother seemed to visibly improve her. She tires easily and has little stamina, but in all other respects acted like a normal 9-yr. old. She is not able to be in public places without a hepa-filter mask,as her immunity is non-existent, and her room at the Ronald McDonald house was off-limits to us. We ate our meals picnic style in the car, or open parks - simple is good and we were happy just to be together & celebrate the true joy of Easter. We don't know what the future prognosis or treatment will be, but it appears a permanent move to Stanford is inevitable. Whether the other 2 kids will be able to go or need to stay with us is uncertain. Please continue to keep Amanda in your prayers for physical healing and she and Tracey for emotional and spiritual strength - they are pretty overwhelmed. It is a time of turmoil for us all, but God knows the plans He has for us and we trust in His loving grace. Thank you for your love and support. - Love, Pat

03/25/04
Dear Family, Friends & Prayer Partners, The news on Amanda changes daily & sometime more often - since the transplant she has been in & out of the hospital as the Dr's try to treat each new set of symptoms. She doesn't follow any expected response to most of the things they do, & every possibility is agressively treated. Last Tuesday they did remove the chest catheter & urinary stint due to another bacterial infection, extremely high blood pressure, & temp of 102. They have put her back on diuretic & blood pressure meds, along with the steroid & anti-rejection drugs, & have stopped faresis for the time being. Possible reoccurence of the disease and/or rejection of the new kidney are the concerns at this time. Although much earlier than planned, as soon as the infection is completely cleared up another biopsy will be done to determine what is happening. Please continue to keep Amanda & Tracey in your prayers. We thought the tranplant would mean a turn in the road & a definite goal of them coming home, but the future is still very uncertain for all of us. We continue to trust in God's plan for our lives, and for His grace to sustain us a day at a time, in all things. Thank you for your love and support. - Love, Pat

03/19/04
Hi Everyone, Amanda has been fighting a temperature today and higher blood pressures and headaches, for the last day or so. I think the latter two go hand in hand. The doctors still haven't been able to maintain a consistent Prograf level (toxic, immunosuppressent, anti-rejection medication,) but that seems to be consistent in the early stages of a kidney transplant. Amanda's other labs have not been encouraging for me. Her labs are taken by a needle poke and monitored carefully, on a daily basis. It seems more and more evident that Amanda does have FSGS Recurrence. This is frightening, yet at the same time I have a peace about it. I am able to look around me, and be grateful that my child and I have not had to face some of the tragedies that I see other families trying to cope with. The doctors are very careful with Amanda, and I am confident, that she is getting the best care possible. She continues to play far harder, then she should, given the opportunity of another child around. I admire, that even when she doesn't feel well, she plays as long as she can. Fortunately for the families, and unfortunately for Amanda, we have seen many families complete their care here, and return home. Another family will soon follow, though, for Amanda to make a new best friend. The weather is beautiful here, and the air is soft. We are trying to make the most of it, but some days, this all seems so unreal. Please continue to pray for us, as I know that so many of you are. The Lord still has a plan to be carried out. We pray for strength, endurance, patience and gentleness. The Lord knows what is best and continues to renew us with his love. Thank you for all the many encouraging and supportive emails that you have sent. All my love and prayers to all of you, Tracey

03/02/04
Dear Everyone, Amanda seems to be doing better. We had a scare on Sunday night, when she became dizzy. Her labs revealed that her potassium was at a lethal level. An EKG reflected that her heart was being affected. They did numerous labs on her throughout the night, trying to understand and control what was going on. I still don't think they know what happened or why, and I am sure that I don't. It was a long, hairy night of watching Amanda being constantly stuck with needles, and feeling very uncomfortable. God can do everything, because I certainly couldn't do any of this without him. I was so grateful that night when I could remember the Bible verse of "I can do everything throught the strength of Jesus Christ". Amanda is doing much better now, and labs seem to be where they need to be. If all continues to go well, she can get out of the hospital on Wednesday, and go back to the Ronald McDonald House. We have been moved to an immune wing at the house, per doctor's orders. I think it will be a little more "homey" and give us more space. Amanda's spirits are better, but she still has a gray palor to her. I understand that this is normal for transplant recipients. We still have no complete answer as to whether she has Reccurrence or not, but things are looking positive, at this time. Amanda still continues to get profilactic treatment for the disease, though. The treatment itself is very rare and not used very often. Amanda is very carefully monitored during these treatments, and experienced nurses are being trained and supervised on its' methods. I am so grateful that Amanda has been under the care and specialty, here at Lucile Packard Children's Hospital, and the doctors who care for her. I pray, and ask all of you to pray, that God continues to guide the doctors in caring for Amanda and discovering and treating new problems quickly and efficiently as they arise. Amanda, is in the Lord's Hands, and he holds her with so much care and tenderness. I guess, he holds me, too. I really do feel grateful. We hope and pray that Amanda will not have to endure much more discomfort, but success, instead. We have continued hope that we will return home soon. All my love to all, Tracey

02/17/04
Dear Family Friends & Prayer Partners, Amanda's transplant went as scheduled Mon. 2/9 & took approx. 8 hrs. David's part took about 4 hrs. & went well. He left the hosp. on Fri. & will probably be able to go back to Redding next Fri. Amanda has not fared so well. Early Wed. she had to go back into emergency surgery & be "reopened" for a biopsy. Her urine had stopped and the labs were way off. The tests have been inclusive, but a tissue sample taken should give an answer by Wed. night. One of the possible causes is a return of the FSGS, the disease that destroyed her own kidneys. Amanda has had to have a blood transfusion, plasma faresis daily, & is hooked up to numerous wires, tubes & catheters. The reopening of the incision for the biopsy started the healing process all over. Needless to say, she has been in a lot of pain & has been very emotional & agitated. Tracey has run the gamut from overwhelmed to numb & back again, but they are both strong and the bond between them is incredible; they are a source of strength to each other. Strange as it may sound, or not so strange if you know our God, we are at peace. Whatever the outcome, we are secure in the knowledge that He is in control. Whatever has been needed up to this point He has provided and we know He will continue to keep us all in His loving care. Please continue to keep our whole family in you prayers, as well as the Dr.'s as they look for answers.Thank you - Love, Pat

02/15/04
Dear Friends and Family, I have no news yet. The doctors hope to have tests results back, and some answers on Wednsday. They gave Amanda a blood transfusion last night. She is very uncomfortable and not extremely cooperative right now, but who can blame her? I don't. I am trying to keep her spirits up, but she is feeling very defeated, that "We will never go home, and this is never going to get better." I try to comfort her with "that it will, and we will." However, there are times, that I wonder if that is God's will for us. I don't know. Please pray hard. Tracey

02/13/04
I write this email with a heavy heart. I was contacted by the attending nephrologist (Amanda's doctor) before 6am this morning. Something is wrong. My mom and I got to the hospital immediately and just in time to see them take Amanda into the operating room. We aren't sure what is wrong yet, and even though she is out of sugery, we are still waiting anxiously for lab results that could or could not be conclusisve. It may be that one of the anti-rejection medications has scarred the kidney, that the kidney is being rejected or that the disease that Amanda had (FSGS) (that started this nightmare,) has reoccurred. We know that our church, the First Baptist Church of Carson City is in prayer for us, as I spoke to the pastor earlier today, when he heard the news. We are all very anxious about these new developements, but again, we have faith that the Lord will carry Amanda through, Amanda is very agitated and so tired of all the pain. She is so sedated that half the time she doesn't know what she is doing, she just hurts. She tried to bite a nurse when she tried to untangle all of the tubes and lines connected to Amanda, after they took her back to ICU after the operation (kidney biopsy.) We ask that you all continue to keep Amanda in your prayers and that Amanda has full recovery from this set back. We will keep you posted. All my love,Tracey

02/12/04
Deared Loved Ones, We were so very touched by the out-pour of love shown by so many in the community. I just recently became aware that a local school is fund raising for Amanda. We are so appreciative of all the kindness that has been bestowed. Sunday night before transplant was diificult in preparing Amanda physically for her transplant the next day. On Monday we discovered that Amanda's dad, David had two arteries instead of one. This is not completely uncommon, but makes it difficult for the surgeon, and is more time consuming. If both arteries did not get connected to Amanda just right, she would have had only half kidney function. Eight hours later (10pm or so) Amanda came out of surgery. The doctors said that everything had gone extrememly well and better than expected. Amanda is in a lot of pain, and has had new complications everyday, but is doing very well. She is still in ICU, but hopefully will be transported to the hospital unit tomorrow. Her dad walked down to see her today. Although he too is very sore, he is recovering well. Thank all of you again for your continued and ferverent prayers on Amanda's behalf. God has everything planned just right. Our prayers are being answered daily. We love you all ,and will update you as time goes on. Love, Tracey

02/07/04
Dear Family, Friends & Prayer Partners, We are still scheduled for the transplant to be done Mon, 2/9. A new chest catheter put in last week seems to have been a success. The old one was encased in scar tissue & held bacteria, causing Amanda's ongoing infections. As of today she is infection-free & the tissue match done 2/5 showed both she and her father OK for the surgery. We have especially felt God's presence this past few weeks and face the coming days anxiously but with faith, peace, and the sure and certain knowledge that Amanda is in God's loving care. We ask that He give the doctors wisdom beyond their human understanding, and that their hands might be guided by His divine grace to bring our little girl out of a long dark tunnel. Please continue to lift her and all of us in your prayers as you have done so faithfully for the last 2 years. Thank you each and every one. Love, Pat

02/07/04
Well, It is Friday, the cross match between Amanda and her dad went well yesterday, and all things are a go for transplant on Monday. It is a good thing, because her new catheter that was placed a week ago, is already beginning to fail. We have never gotten this far before something happening and the transplant being cancelled. Amanda is feeling good and doing well. I trust that this will be the "One", but am experiencing a "low" of the rollar coaster ride that we have been on. I am already feeling excited about going home (100 days after transplant), but I am trying to keep myself in check as well. Thank you all for your love and prayers. I want to especially thank Bill, Karen and their family. Thank you to all of you that haven't forgotten about us over all the failed attempts and lengthy time that we have had to be here. You mean more to me and my family than you could ever know. Please continue to pray for us and not to forget about us. All my love, Tracey

01/31/04
Dear Loved Ones, Amanda had her old catheter removed last Monday. It was encased in scar tissue, which is why dialysis wasn't working, and full of staph infection. She had a new catheter placed on Wednesday. It was a hard week. We had already dealt with miscommunications amongst the medical staff. There were days when they made her go without food and fluid all day, did extra labs, because they said her surgery was critical, then it never happened and we would learn later that she had never even been added on to the surgery list. That had been a breaking point for me, as well as an explosion point. The important thing is Amanda did finally get the catheter problem taken care of. She recovered well from the first surgery, but after waking up and discovering a much larger catheter in the middle of her chest on Wednesday, she was down right angry, fed up and in pain. I can't say that I blame her. The nurses have been wonderfully gentle and understanding with her extreme agitation and uncooperativeness. Amanda has become a very difficult "stick (lab draw.)" We met Alan Earles last year when we were here. He is the head of the phlebotomy department. When he heard about no one being able to draw Amanda's blood, and her being terrified of all lab people ("the evil pokers") he came up and drew Amanda's blood himself and told her to call him anytime she had labs, and he would come, and he has. This last week and a half has been really miserable for Amanda with the labs, until Alan started coming again. Amanda trusts him. She doesn't cry when he is there and is completely cooperative. The day of her surgery on Wednesday, Alan wasn't due to be at work until 7:30am. He instead came in at 5am so he could be the one to draw Amanda's labs. Amanda put a sign on her door that "no pokers allowed (lab people). Only her doctor, nurse and Alan Earles allowed," in her room. We are very touched and grateful for the friend we have found in Alan Earles. Amanda did get out of the hospital on Thursday. Dialysis is going well, and she seems to be feeling better. Transplant is scheduled for Feb. 9th, a week from Monday. We pray that this transplant will take place then, if it is God's will. Thank you for all the kindness and support that so many of you have shown for myself and my family. Please continue to keep Amanda in your prayers for this upcoming sugery, and the time thereafter. All our love, Tracey

01/24/04
Dear Family Friends & Prayer Partners, Another setback, as the transplant surgery had to be postponed - Amanda has a bad catheter infection which has again gone into the blood. Dialysis is barely pulling off any waste & she has been a very sick little girl. A new catheter will be put in next Monday or sooner & a new transplant date has been set for Feb. 9th. We are all "zapped" but realize Amanda's welfare is the only relative thing thru all this. Needless to say, both she & Tracey are in an emotional place & really need your prayers. This has been such a hard 2 years. I will be offline for about 10 days for computer repair, but will try to keep you posted as soon as possible. Thank you again for your love and support. - Pat

1/21/04
Dear Everyone, Bad news. Amanda has a staff infection in her blood. I got the word today that transplant will be held back a couple of weeks, in order to administer antibiotics. The only problem is that Amanda's catheter is working so poorly that she may need to have a temporary catheter put in, in the meantime. This means another surgery. If I wasn't in the middle of all this chaos and so severely homesick, this would "almost" be comical. As you all know, this is the fourth to fifth time that transplant has been postponed and the third time because Amanda has contacted some sort of infection at the last minute. Amanda has been through the ringer. They have started her on Vancomyecin, which is an antibiotic. Amanda reacts terribly to it with the itching it creates, especially on her scalp. They gave her a big load of Benedryl along with it, then later, Vicoden. Nothing helped, but she did eventually fall asleep. We just can't touch her head today because of the soreness. She is still being dialyzed everyday, but only has to get the Vanco, every so often. This is because without any kidneys the antibiotic stays in her system longer. Although I am tired, and hate watching Amanda have to go through all the things that she does, I know God sees the bigger picture. Amanda will be transplanted when He is ready, so she will be ready. Amanda is in great spirits and charming the staff at the hospital, as usual. The doctor has given her permission to go to school here at the hospital, the recreation room, and to the nurses' station (if they so desire her help.) Other than that she is not to go in the other kids rooms or have them in her room. There are a lot of viruses floating around the hospital and he is trying to keep her from them (good luck!) Amanda is very excited about a movie she will be making soon. Some people who have contacted the school here, are helping the kids to make their own movies about their experiences here. We hope this is something that she can do, that we can share with you at home or here on the webpage. She wants to help other kids get through things like she is going through. I just look forward to when we do get through all this and CAN look back. Thank you all for your prayers and everything else. We love you, and continue to pray for the Lord's will to be done! Tracey

01/18/04
Dear Family,Friends & Prayer Partners, Amanda's scheduled transplant for Mon.1/26 is still a go at this point. She was admitted to the hosp. yesterday after a seizure-type episode during dialysis. The outpatient dialysis 3 times a week for 4-5 hours has been very hard on her & the amount of waste removed from her blood each time has lessened dramatically the last 2 months. If daily dialysis for shorter periods is able to remove waste without exhausting & drying her out to the point of being sick & passing out, staying in the hospital (rather than the Ronald McDonald House) will be OK. If that does not work, a new hemocatheter may have to be surgically implanted & the transplant postponed again. Please continue to lift both Amanda & Tracey in prayer for health and strength of mind and spirit, and most of all that the transplant can be done this time. David, her father who is donating his kidney, seems to be maintaining his health & cooperation, & that is a blessing. Our family had a blessed Christmas together at Stanford and it helped us realize more than ever that God loves and cares for us all the time and in all ways. We know His hand is on Amanda and things will work out for her best interest and to His glory. Thank you for your continued care and support, and most of all for your prayers. They are our lifeline. Love, Pat

01/13/04
Dear Loved Ones. We finally got a new date of January 26th for transplant date. Amanda has a stuffy nose right now, and trouble breathing at night. We pray that this clears up before the 26th. Please keep Amanda in your prayers. She is having a very difficult time with transplant coming upon her and everything leading up to this point. She is terrified of the foley catheter that they will put in during transplant, having another large scar on her stomache, taking medicine the rest of her life, etc.., She has informed me that she does not want the transplant at all. She is just plain fed up. It is painful for her to go out into the public right now due to people pointing or whispering or staring at her because of her wearing a mask or the NG tube taped to her face. Children are the cruelist of all, with the comments that they make. I am sure that the fact that her hemodialysis catheter not working or cleaning her blood is having a huge impact on her as well. She doesn't feel well most of the time, but puts a smile on her face and puts up a front for the people that she knows here. The kid just wants to be like any other kid. She crys a lot right now, and I am hoping that she will gain some peace. We have tried talking to her and explaining things, as well as having people talk to her that have had some of these procedures and haven't had very much pain. She gains no comfort from any of this. Please PRAY, PRAY, PRAY!!!!! All my love, Tracey

01/07/04
Dear Loved Ones, Thank you so much for all of the gifts, warm thoughts and goodies that many of you sent over Christmas to Amanda, myself and my family. None of it went to waste and was greatly appreciated! I wish I had better news, but we are still waiting for a new transplant date. Amanda is primed for transplant now. She is healthy and her labs are where they need to be. After seeing her doctor in dialysis clinic yesterday, he reiterated how important it is to get Amanda transplanted now. Her hemocatheter has never worked well, but is working even less now. The waste is not being removed from her blood. This would explain why some of her labs are way out of range, and school is becoming very difficult, even at the very basics. Uremia in the blood makes it difficult to function, let alone think. Everyone thinks Amanda looks great, but I know what she should look like, and that although she is always happy and upbeat, she doesn't feel good. I believe Amandas doctor has expressed his concern to the appropriate people and she will be transplanted soon (I have to believe this.) If not, she will need to have another operation for a new hemocatheter, because she can't continue much longer with the one she has. We are prepared at a moment's notice to do this. I believe that Amanda's father,David feels the same way (he is the kidney donor.) He apparently lost his job when the last transplant was cancelled, and told to return when the transplant had actually been completed. This has put many people's lives on hold who are involved with this transplant, but I think everyone would agree, that Amanda is the priority and what's best for her. Amanda and I moved into the renovated Ronald McDonald House right before Christmas. The accomodations are nice, but we were very disappointed that my family and I were not all able to stay together. We got my parents a hotel. I am just pleased that we could spend Christmas Day together, after Amanda was through with dialysis. Amanda and I are very homesick right now. We both miss my other two kids, Jacob and Jessica very much. Hopefully we can transplant soon and start our beginning to the end. We will need to stay in the area for a little over 100 days post transplant. But I believe that will be cake compared to the four months that we have already been here. At least we will know we are going home! I send all of you my love and ask that you continue to pray for us to be steadfast. God sees the big picture, and we trust in that! We wish you all a wonderful and prosperous NEW YEAR! All Our Love, Tracey and Amanda

12/02/03
Dear Family, Friends & Prayer Partners, The transplant has been postponed for the 4th time. The good news is that both a bacterial infection from Amanda's catheter, & a viral infection causing flu symptoms, were discovered before she was operated on. Surgery with infection already in her body would have severely compromised her depressed immune system. She is being given antibiotics & will no longer receive the faresis which depletes and weakens her. She will be in the hospital for a while, but is already feeling better after dealing with a high fever, muscle cramps, headache & nausea. She is definitly not happy about missing The Nutcracker ballet put on at the hospital, the tree lighting ceremony or all the other Christmas activities taking place around her, but she is being isolated as much as possible. Her room is her world for now. Please lift Amanda in prayer that she will be strengthened in body, mind & spirit; It has been an esp. hard month for she and Tracey. A new transplant date hasn't been set - maybe even not until Jan. and I know it's hard for a little girl to understand what God is doing in her life. Though we can't explain it, God knows, and understands her pain and frustration.We are asking for His peace to guard our hearts and minds, and give us His wisdom to help Amanda deal with the situation. Thank you again for all your love,support, and prayers. We are one in His spirit. Love, Pat

11/17/03
Dear Family, Friends & Prayer Partners, Tracey just called to ask that Amanda be lifted in prayer as her blood pressure is very high in the 160-180 range, with terriffic headaches. The possibility of seizure is such a concern with the elevated blood pressure. She has to start the faresis (blood cleansing) again next week in preparation for the transplant, & this, along with the dialysis is exhausting for her. The transplant has been tentatively rescheduled for Wed. Dec. 3, but that is still uncertain. Please keep Amanda in prayer for stabilization of the blood pressure and resulting physical symptoms, and for Tracey for peace and strength. Thank you, Love, Pat

11/11/03
Dear Family, Friends & Prayer Partners, The transplant surgery scheduled for Mon. 11/10 was postponed due to a throat infection. As you can imagine, everyone was disappointed, but God is in control and we praise Him for watching over Amanda. To perform the surgery under compromised conditions could be fatal for her, and we count it by His hand that the problem was discovered (by Tracey). As soon as the virus is gone, followed by at least a week's clear health, the surgery will be rescheduled. As people everywhere were lifting Amanda in prayer esp. these past few days for the surgery to go well, we all felt such a sense of peace and love. God most certainly has His hand on her and us and each of you, as we come together in His name. As soon as a new date has been set I will let you know. Please continue to keep Amanda & Tracey in you prayers for strength and peace and courage. Thank you with all our love, Pat

11/10/03
If you haven't already heard, Amanda's transplant was cancelled on Friday due to a virus that attacked her throat. Later that evening she was feeling pretty miserable and running a fever as well. Transplant will be rescheduled for two or three weeks down the road. Our family still came over for the weekend. Even with the let down of the cancelled surgery, Amanda and I were both thrilled to spend time with my other two children and my parents. It was a wet (it rained the whole time,) but cozy and well needed time for all. Amanda is still feeling crummy today, and is back on hemodialysis as of today. I believe there is a reason why we have had to postpone transplant surgery, again. I am disappointed, but faithful that it will all work out. Please continue to keep us in your thoughts and prayers. God hears you, and blesses us daily, as a result. All my love and appreciation, Tracey

10/27/03
Dear Friends and Family, I haven't written in a long time, because I didn't no where to start, and some days it seems like it will never end. Amanda is doing well. We came back to Packard Children's Hospital 3-4 weeks ago (Bay Area), due to an abdominal infection that spread upward around the hernia area. The doctors chose to remove Amanda's peritoneal catheter in her stomache and replace it with another hemodyalysis catheter in her chest. Hemodialysis has been a new adjustment for she and I, as far as regulating much more carefully what and how much she eats and drinks. It is much more of a balancing act with trying to keep her labs in order and not let her get too fluid over-loaded. The fluid gets in her lungs and makes it difficult for her to breathe. Amanda has started her two week course of plasma fresis this morning (takes a couple of hours) and then headed down to hemodialysis for another 3-4 hour treatment. I am trying to keep up with our laundrey (I can do it here at the hospital in the parents' lounge.) I run back and forth from the third floor to the first and the basement, trying to find something she can and will eat. Unfortunately, her eyes say yes, and her tummy says no. The people here are nice, and I have run into some families that we met when we were here before. I feel like I should be more friendly or sociable, but I can't seem to make myself seek them out. Our doctor is in China right now with other doctors and dentisits on a missionary type trip. I truly wish I could be more like him and give more of myself to others. Amanda's transplant approaches us on Monday, Nov. 10th. She will be admitted the Friday before to make sure everything is in order. Her dad will be admitted on Sunday to the adult unit at Stanford to prepare him for donation of his kidney, the next day. Actual transplant hasn't seem to sink in to Amanda, yet. She doesn't seem to grasp the time frame involved. She has waited for so long and had so many different changes to deal with as well. She is in very good spirits, but misses her brother, Jacob and twin Jessica, very much. She misses home and her grandparents and her friends. She misses school and boys she likes to chase. I am attempting to keep her on track with school, but many days she feels crummy, that it makes me feel guilty. I appreciate your love and prayers and support. I know most of you never hear from me, but I know that you are there, and it matters. Sometimes, it is the only thing that has any perspective for me. We wish you all well, with all of our love, Tracey

10/23/03
Dear Family, Friends & Prayer Partners, We are still in a 'holding pattern' in preparation for the transplant on November 10th, with David, Amanda's father, as the donor. Amanda is scheduled to be admitted on Friday, Nov. 7th to be sure everything is clear, and the removal of David's kidney & the implant into Amanda will all be done the same day (the 10th). Tracey and Amanda have now been at Stanford since going down Sept. 20th, and will be there until approx. 3 months after the surgery. Amanda is having dialysis at the hosp. as an outpatient 4-5 times a week as lab test results indicate the need, & will start the blood cleansing next week. She is scared this time, knowing somewhat more what to expect, and the dialysis often makes her sick, which lowers her resiliency. She is, as always, strong & witty, and irrepressible, and you can't meet her without having that beautiful smile imprinted on your memory. God must truly have great things for this child and her mother to do, as He prepares them thru all this. Please continue to keep Amanda and the whole family in your prayers for strength, faith, peace, joy, and the sure and certain knowledge that all things work together for good for those who love the Lord. Thank you. Love, Pat

10/06/03
Dear Family, Friends & Prayer Partners Amanda had to be admitted to the Pediatric Hospital in Stanford on Saturday, as her catheter had become infected & the oral antibiotics she was getting here wern't aggressive enough. The IV antibiotics there seem to be controlling the infection & the stomach catheter will be removed sometime this week & the chest (hemodialysis) catheter put in, in preparation for the transplant. The transplant is still scheduled for Nov. 3 with David, her father as the donor. Going to Stanford was a week earlier than expected & had to be done on an emergency basis, but we are thankful that as usual, God had His hand on everyone involved & it worked out. Your continued prayers help keep everything in kilter, even when you may not know the specifics, so please continue to do what you are doing. Thank you. Love, Pat

10/02/03
Dear Family, Friends, & Prayer Partners, It looks like the transplant is definitly set now for Nov. 3rd, & David has been "cleared" by the nephrologist as the donor. Please continue to keep everyone involved in your prayers for God's guidence and protection.

09/28/03
Dear Family, Friends, & Prayer Partners, As of last Tuesday, when Tracey & Amanda were at Stanford for clinic & consultation, it appears the creatin test on David is still inconclusive & the alternate nuclear isoptope test will be given to determine the actual "real time" condition of his kidney as the test is being administered. Amanda's main Dr., Peter Yourgin, believes David's kidney is good & he will be the donor. If this is so, Amanda will go into surgery Mon. Oct. 13th to have the peritoneal catheter removed & a chest catheter put in. She will have her blood cleansed several times & then the transplant will take place on Mon. Nov. 3rd. All this could change, but the new schedule is our target for now. We are learning to expect the unexpected and adapt as needed, but some days it gets hard. Please continue to keep us in your faithful prayers - you are a source of strength and encouragement we have come to count on & appreciate more than we can ever express. Love, Pat

09/17/03
And so it begins . . . The transplant may have to be postponed. Stanford Hospital called Tracey this p.m. to say it appears one of David's kidneys may "have a problem". They want to redo one of the tests tomorrow, & she was trying to reach David to tell him. The chances are 70 % it will give the same result, but they want to try. If they get the same result, they will cancel the transplant & ????? Try to start over with Michael, our son, as the donor, I guess. Please keep this whole situation in prayer, as there have been so many dialysis problems lately & we were really preparing to get this done & move on. Thank you. Love, Pat

09/16/03
Dear Family, Friends & Prayer Partners, Well, it's almost "show time" and we are getting ready for the next big step in Amanda's journey - the kidney transplant is scheduled for Mon. Oct. 13th. Amanda will enter the hospital next Tues. 9/23, & have a hemo-catheter inserted into her neck area for a blood cleansing process prior to transplant, and for hemo-dialysis as necessary. She & Tracey will stay in Stanford until the actual surgery, for work-ups & pre-operative procedures, be in the hospital for approx. 3 weeks after the surgery, and then go into the clinic daily as an outpatient for 2-3 months. This is the plan, anyway, based on the best-case scenario. The Dr.'s have told us there is ALWAYS at least one incident of post-operative rejection so they will keep her under extremely close supervision during the 3-month post-operative period, to counteract this as quickly as possible. Her father, David, is to be the donor, with one of his kidney's removed in a 4-5 hour surgery, & immediately implanted in Amanda in an 8-10 hour surgery, with some of the same Dr's being involved with both surgeries. God is definitely at work in this whole situation - as problems & obstacles keep coming up, He walks us thru each one. Please continue to give us the miraculous support as you have in the past with your love and prayers. We are already praying for renewal of Amanda's strength of body & spirit, as she has often been sick lately with nausea, fluid retention, & high blood pressure. The home dialysis & tube feedings are not working well. She also knows some of what to expect about being in the hospital this time, & we ask for calm & the peace of God that surpasses all understanding for both she and Tracey. Please pray with us for all the Dr.s', nurses, technicians, support people and anyone either directly or indirectly associated with Amanda's surgery & care. I even pray that the janitors & food prep people & clerical workers be in God's special care during this time. May each of them have knowledge & wisdom & focus beyond their human experience & abilities. Please keep David in your prayers too, that he remain healthy and courageous and able to do this for his child, and that he will be blessed in every area of his life as a result. Thank you again for lifting us all up in so many ways. Love, Pat

08/18/03
Dear Family, Friends and Prayer Partners, The long time since the last update has been a good thing. It has been a wonderful summer for all of us. The dialysis and tube feedings have held ups and downs, with sleepless nights for Tracey & Amanda, and some days of nausea and feeling "wiped out" for Amanda, but we count the good things too. Amanda has been able to spend this time doing home-schooling, playing with her brother & sister & generally being a normal kid (whatever that is!). She has gained dry or normal body weight not based on fluid overload. She is active, suntanned, noisey, busy, & gregarious. - a far cry from the sick, frail, subdued, emotional little girl who came home last April. Except for the feeding tube taped to her cheek, she looks like any other 9-yr old little girl. As we prepare for the next phase of this odyssey,- the transplant,- please help us to uplift any and all areas of concern, and all people directly or indirectly involved, in your prayers. It appears that Amanda's father, David is the best tissue match and will be the donor. The surgery is to take place in October, at which time Amanda will have been steroid-free for a year. Tracey & Amanda are going to their monthly clinic visit at Stanford on Tuesday & we are hoping to get an actual surgery date and more information then. As we learn more, we can share the information and specific areas for your prayers. I know God has given you all to us and that your prayers and support are sustaining factors that got us thru the past year. Please continue to lift Amanda up as she faces this next major challenge. Thank you, Love, Pat

07/04/03
Dear Loved Ones, I just wanted to touch base with all of you. Amanda seems to be doing great at this time. The machines alarming at night make sleep difficult, but we are grateful that Amanda is feeling better and not in any pain. The appointment at Stanford with GI and dialysis, went well. Amanda has started to recover some from the effects of the steroids on her growth. She is now in the %50 of the national average for her weight and height. Taking care of Amanda continues to be a constant struggle, though. It was realized at Stanford that she has to be maintained in a very small window of one kilo, or she becomes extrememly hypertensive or hypotensive, and will faint. Her eating isn't consistent yet, but she is much more active than she has been since her illness started. Many days it is difficult to know what her "dry weight" is becuase of her activity level. She is happy and hard to keep down though. She plays (and fights) with her brother and sister, like any other kid. We do have to remind her to take it easy, for fear of causing more damage to the hernia around her catheter. We are all just trying to maintain her until her kidney transplant, scheduled sometime in October. Amanda and I will make another trip to Stanford for a couple of days, to start the evaluation process again on the 15th of this month. Amanda's father, David will be at this visit as well. He has been selected by the doctor to be the initial donor for Amanda. We ask for you to keep us all in your coninued prayers, and hope that Amanda's father continues to be a good match for her throughout the testing and is cooperative and compliant, as well. I want to thank you again for all of your love, support and prayers. Through God's love, mercy and your support and prayers, we are getting through this. Thank you. All my love, Tracey

06/03/03
Dear Family, Friends & Prayer Partners, The long time since the last update has been a good thing ----for the most, all has gone well with Amanda's life back in Carson City. She has made 2 trips back to Stanford for 1-day clinic visits & the Docs were pleased with her progress. Her work with a home-school teacher & being able to attend public school for an hour or so occasionally have been very good for her emotional state. As always, her spirit and strong personality have served her well in dealing with stares & questions about the feeding tube which she always has taped to her cheek, and her limited physical activity. Please continue to keep Amanda and Tracey in your prayers as they are encountering constant problems regulating the nightly dialysis and feedings. As you can imagine, Tracey doesn't get much sleep, as she monitors the equipment thru the night and each alarm means an adjustment. Amanda often comes awake with vomiting or diarrhea & everything has to be cleaned up & the machines reset. This exhausts and weakens her. Thank God for the accessibility to Stanford personnel 24 hours a day! Our family has all been so blessed by your prayers and support thru everything, and now during the wait for the actual kidney transplant. Please continue to lift us up to God as we fight to keep Amanda stable, provide a "normal" lifestyle for everyone, and build her up for the next big step. Her trip to the local ER last Sunday was a scare that reinforced just how fragile she and this whole process is. The prospect of Amanda & Tracey having to move back to Stanford constantly hangs over them, but God is good and He has promised all things work together for good in His own way. We claim that. Love, Pat

04/26/03
Dear Prayer Partners, It has been a long time since the last update on Amanda, & you might like to know her current status. Praise God, things are going well. Tracey & Amanda went to the 1st clinic visit at Stanford Pediatric Hosp. last Tues. & eveyone there is very pleased with her progress. (Her potassium is still a concern, & the fluids have to be closely monitored, as fluid build-up causes havoc with blood pressure & other body systems.) But . . her tube feedings have been reduced from 3, to 2, & now to 1 can of supplement a night, & her appetite is definitely good here at home. Of course she is still on nightly 10-hour dialysis & will be until the transplant, & there are good nights & bad nights, but overall, this is such a better situation than several months ago. She is even going to the public school a little while each day with plans to extend the time as she gets stronger. Her home school teacher comes a few hours 5 days a week to help "catch her up". Last Sunday, Amanda went forward in church to accept Christ as her savior and ask to be baptized. What a blessing to see God's hand bring this little girl from near death to stand before Him & ask for eternal life. Your prayers, support, love and encouragement are a great part in reaching this point in God's plan for Amanda, and the rest of our family. Please continue to keep us all in your prayers. Love, Pat

04/04/03
Dear Prayer Partners, Well, they have been home a week tomorrow, and so far, so good. Despite ongoing problems with the feeding pump, & some stomach upsets, Amanda is holding her own. The plan is to let her spend limited time at school for music & computer, in addition to home schooling. She tires quickly & has trouble handling even small frustrations, ( she was always the calm stoic one) but is very excited about being with other kids. They are still moving into the rented house a few blocks away & staying here, as Tracey tries to get everything ready & find useable furniture. She has a table, 4 chairs, partial bed setups & a washer & dryer, so the place is pretty empty, but nature hates a vacuum, so I'm sure the things they need will show up. Please continue to keep them in your prayers. Thank you, Love, Pat

03/31/03
Dear Prayer Partners, We thought this day would never come, but Amanda & Tracey did finally get to come home- almost a year to the day that they flew out on an emergency medi-flight. We picked them up in Stanford & came home Sat. pm after a day of "yes/no/yes, OK, you can go" from the Dr's. On Sunday Amanda even went to church &"helped" us move some stuff to their new house. They are now set up with a liason Dr. who can back up any needed ER services, write prescriptions & work with the pediatric Dr's at Stanford if necessary. The 1st night of dialysis & tube -feeding here went smoothly. What a wonderful blessing it is to finally write some positive things and though we're a long way from the end of the battle, we're a lot closer than ever before. Please continue to keep Amanda in your prayers for stability, successful dialysis and tube feeding and most of all protection from infection and imbalance of her body chemistry. She is SO happy to be home and I believe your faithful prayers have helped make that possible. Please continue to lift us all to God in the days ahead. Thank you, Love, Pat

03/25/03
Dear Family, Friends and Prayer Partners, We are in a count-down pattern as Tracey and Amanda prepare to come home next weekend and try to maintain the nightly dialysis and feeding tube process. If all goes well at Stanford Hospital this week, they will be released and scheduled back there for monthly visits, until the kidney transplant can be done. Amanda's peritoneal catheter has gotten infected so she is back on (oral) antibiotics, with occasional vomiting, but is still eating some and having bowel movements. Please keep them in your prayers this week for a "crises-free" period so that they can come home and resume as normal a life as possible here close to the rest of the family. We are praying for peace and strength and health for them as they pack up after a year there. The dialysis and feeding equipment and supplies are in huge quantity, so it is a big undertaking to bring it all here and set it up. Thank you again for all the love and encouragement, support, and daily prayers on Amanda's and Tracey's behalf. Please stay with us as God moves this into a new phase. Love, Pat

03/10/03
Dear Family, Friends and Prayer Partners, Amanda is still in the hospital, as the Dr's try to stabilze her feeding tube procedure, regulate the dialysis and deal with her bowel problems. She was completely impacted from dehydration, which x-ray now shows clear, after 6 enemas and hourly infusions of "roter-rooter" strength laxatives. The nausea is ongoing & the resulting vomiting throws out the feeding tube going thru her nose into her stomach, which then has to be reinserted. She insists on doing this herself, as it seems to hurt a little less. They did surgically insert a new pic line into her right arm on Friday, to give intravenous antibiotics to fight infection from the old chest catheter. She will be on these for a week, & with all this combined, their discharge from the hosp. & return to Carson is in limbo. We were able to visit them at Stanford last weekend, & Michael our son, & his wife Wendy, came too. It was the 1st time we had all been together in over a year & gave us a much-needed lift. Tracey is wiped out emotionally and mentally from this last go-round & finding it hard to keep perspective on what's best for Amanda, as she has to make daily decisions & constantly monitor everything affecting Amanda. Please continue to keep them in your prayers for renewed mental and physical strength, for stabiliizing of all the things going on, and for Divine guidance for the Dr's in planning the days ahead. A steroid-free transplant may not be the best option for our baby, and we are asking God's answer to that question be revealed to us. Bless each of you as you lift them in your prayers. Love, Pat

02/23/03
It has been a tough past week. Amanda became progressively worse each day, with severe abdominal pain and vomiting. On Friday morning I made contact with the Dr. to have her admitted to the hospital. By the time she was suppose to be admitted, I was concerned that I would need to call 911. Her pain was so bad that she was dizzy and could not stand or see, her vision was blurred. Friday night was a long one. Amanda was given morephine among other pain killers every two hours. The thought was that her new PD catheter had become wrapped around her intestines. They accessed her hemo catheter (which had been scheduled to be removed Friday morning, but was cancelled because of the surgeon having a family crisis), this enabled them to use her Hemo catheter as a temp. I.V site. However, when they accessed it, the catheter became contaminated by internal bacteria which spread a blood infection quickly throughout her body. This created flu like symptoms of fever, chills and body aches. On top of this, they discovered that her potassium level had reached a dangerous high and could create a stroke and other heart problems. Antibiotics were administered immediately after discovering the blood infection on Saturday. Early Sat. a CAT scan was done. It showed that everything was were it should be in Amanda's abdomen, however, due to PD dialysis pulling all the fluid from her body, she was below her "dry" weight, and it had caused her colon to completely back up and compact. She had a major blockage. She isn't were she needs to be yet, for us to return home, however, she is out of bed, laughing and playing again. She is not yelling at me becuase she hurts so bad. She had been delirious with pain for the prior two days and couldn't stand to be touched. I had been very scared, I couldn't stop the pain or relieve it or understand where it was coming from. I felt completely hopeless and a very poor comfort. I thank God for his mercy and his healing, and all of you for your prayers. Our return home has been delayed at least for a week, maybe longer, but I am still hopeful that it will happen. Everything with Amanda is such a fine balancing act. Any little thing sets off a 100 other things. Thanks for keeping us in your thoughts and walking this very difficult road with us. We'll get through this! Love to you all, Tracey

02/21/03
Please lift Amanda & Tracey both in prayer today as things have taken a turn for the worse. Amanda is being re-admitted to the hosp. at 1:00 p.m. for extreme pain, dehydration & malnourishment. The tube feeding & dialysis have been a disaster the last 4 nights with clogged tubes, broken tubes, a mal-functioning pump, vomiting & bleeding. Amanda is having severe stomach pain, & cannot stand to be touched even on her arms or legs. Tracey says she looks worse than after her kidneys were removed. She is beside herself watching Amanda suffer & not being able to do anything or even physically comfort her. The Dr;s don't have any idea as to why the pain exists & both of our girls are exhausted emotionally & physically. It is so hard for them, going thru this without physical help and being so far from home, and we were all counting the days until they could come back to Carson. The surgery today to remove the chest catheter has been postponed, and so has the March 1st date to send them home. Please lift us all in your thoughts and prayers as we ask for strength, faith, wisdom and God's abiding peace. Love, Pat

02/13/03
Amanda and Tracey are scheduled to come home the 1st of March, with Tracey doing the 10-hour nightly dialysis and tube feeding. She will have had 3 weeks training by then in those procedures & giving injections. Amanda is still weak & very underweight, but she often throws up or has diareahha during or after the procedures. Please keep her in your prayers not only for physical strength and health, but also for mental and emotional strength to handle this new phase. She seems very angry, insecure and "removed" and then will be almost euphoric - - until time for the nightly regime to start. She is dealing with everything the best way she can, but her coping ability is taxed to the limit right now. She doesn't want Tracey out of her sight, yet gets mad at her for all the stuff she has to go thru each day. It's a no-win case for them both. She becomes very emotional and depressed if people stare at her or ask questions in public, esp about the feeding tube, which stays in all the time. Tracey is really scared about being so far from the medical support there at Stanford.The procedures she will be doing are very exacting and the danger of peritonitis is a constant concern.There is also a tremendous amount of paraphanalia, equipment and drug supplies she will have to use, keep straight and journal. Please keep us all in prayer that God will open our eyes to the help available in making everything work and keeping Amanda stable and getting her strong enough for the transplant. This past 10 months would not have been survivable for any of us without your prayers, support and encouragement. God has opened the door through someone He has provided, each time we thought we couldn't go any farther. I know He will continue to. Love, Pat

01/27/03
Dearest Prayer Partners, The surgery started at at 8:30 a.m., it is now 1:30 and Amanda is back in her room, still groggy, in some pain, & VERY GROUCHY, which may be a good thing. The surgery went well, although they found some adhesions or scar tissue from the original kidney removal. She has incision scars running across and up and down her stomach, and tubes inserted in the lower left abdomen. Dr. Yourgin, her primary Dr., believes it will be at least the 1st of March before they can come back home if things go all right, but that is OK. It's better to have her completely stable & know the stomach catheter is going to work, rather than take the chance of problems and emergency flights back to Stanford. Your faithfulness and support are a witness themselves. We felt such love and support from your response to our request regarding Amanda's surgery today. How can we tell you how much you are appreciated and a blessing to us all. God is stil holding us in His hand and in His plan

01/25/03
Dear Family, Friends and Prayer Partners, Please lift Amanda and Tracey in your prayers especially on Monday morning as Amanda goes into surgery for implanting the stomach catheter. The feeding tube has not worked smoothly & she is still very malnourished and underweight, so things become more critical. Tracey tries hard to keep everything low-key and Amanda calm, but our little girl is turning into a worrier (who wouldn't at this point) & has ongoing nightmares of someone trying to hurt her. Please lift them up for peace and the assurance of God's faithful presence in all that they are facing, and His gift of courage and physical strength to deal with whatever lies ahead. They are both emotionally and physically very fragile just now. We would also ask for the Holy spirit to be in that operating room and touching the hands and mind and heart of everyone involved. Please share our request with all of your own prayer groups and church congregations tomorrow, that we might lift up a mighty and unified voice for God's grace and mercy to protect our little girl one more time. Love, Pat

01/14/03
Amanda is still in the hospital but is stable. Morphine thru an IV was used to stop the stomach pain & vomiting & she was able to sleep Sun. A new feeding tube was successfully placed & dialysis was done again on Mon. without making her sick. (She is now recieving daily dialysis in order to aggressivly control her blood pressure.) She was able to eat a pop tart and went to craft class (Recreation Room)for an hour on Mon. night. These are praise-worthy things, tho we still haven't talked to her on the phone. The plan is to keep her at the hospital for a while (?) longer as to try and stabilize the blood pressure, which is still a great concern. Agreement on how much fluid to pull off of her has not been reached by the Dr.s, or what to do about the BP. Please continue to keep Amanda & Tracey in your prayers for strength and peace, wisdom,comfort and complete healing. Sunday was an absolutely awsome day for all of us as our church family at First Baptist came together as one body to pray and lift us for healing and comfort. We never ceased to be amazed at the faithful nurturing we receive from everyone. God is surely pleased with how well His children care for one another. Love, Pat

01/07/03
Dear Prayer Partners, Please continue to raise Amanda in your prayers as she is being admitted to the hospital Thurs. due to malnourishment & extreme fluctuations in blood pressure. The Dr.s believe she is having seizure activity & also plan to run a heart echo test to determine if there is any thickening of the heart (muscle ?). Her cretin levels are not good & they will try different blood pressure meds. The cuff around the chest catheter is slipping out because the tissues are weak from malnourishment. They are trying to get her stable enough to implant the stomach catheter later this month so she can go on home dialysis 7 days a week, 10 hours a day with a clinic visit to Stanford once a month for a day & night. This just doesn't seem to get any easier for her. I guess they will also have to put in a feeding tube thru her nose. We had a happy Christmas and are thankful for the time together. Your prayers, cards, and support have meant more than we could ever express - we have felt your love in so many ways. Please stay with us as things seem to be moving into the next phase. Love, Pat

12/24/02
This is just a brief update on Amanda. Please keep she and Tracey in prayer esp. today as they go thru what is necessary to get them home for Christmas for a few days. - She had to have dialysis yesterday aft. & again this morning, will fly in tonight on Southwest, & back to Stanford to dialyze again Fri. afternoon. Amanda is very malnourished, and unable to eat most of the time. Her diet is so restricted anyway, but she has no appetite at all - even a few bites at meals is more than she wants. After Christmas, she will be admitted to the hosp. for insertion of a feeding tube, to try & give her the needed strength for the upcoming surgery to insert a stomach or peritoneal catheter. She now has dialysis Mon. Wed. & Fri. for 5-6 hours and is very depleted from it - physically and emotionally. If the stomach catheter works, she will dialyze for 10 hours per night with Tracey monitoring her, and regular visits to Stanford . The kidney transplant surgery is tenatively planned for next Oct. (Both her father David, and our son Michael, are good matches as a donor.) As this year comes to an end, looking back is both painful and awsome. This disease has progressed faster and more severly than the doctors at Stanford have dealt with before. Amanda is a rare case and treating her has taken us all into the unknown. Witnessing the strength and spirit of this little girl, watching her endure what most adults could not handle, and seeing the courage of she and Tracey both, has been awsome. The love, support, prayers, and unfailing encouragement of family, friends, and even strangers, has been awsome. How do you deal with this? How do you trust that it will all be well in the end? You look to God thru the strength of those who are lifting you up. You thank Him each day for giving you these people. May god bless you all. Love, Pat

11/15/02
She continues to be on lots of medication now, & is having a very hard time with her diet. Potassium and phosphorous are as dangerous for her as the sodium - it causes her to fill with fluid & shoots up her blood pressure. Potassium is in most fruits, vegetables, & dairy products, so eating is a real problem, esp. since she is only at 53 lbs dry weight.

Thank you so much for your prayers and encouragement for both Tracey & Amanda. Amanda is very homesick & talks about all the things she misses - skating, going to Sunday school, sitting on Pop's lap to watch t.v, and playing with Jacob. Having Jessica there has made her realize a lot of things.

What lies ahead is in God's hands alone and we ask you to lift us all in your prayers, for wisdom, faith, patience and a heart of thanksgiving to discern His will in all things.
Love, Pat

10/24/02
Dear Family, Friends & Prayer Partners,
Amanda's last update has been a while & that's good news compared to the daily crises of the last 8 months, I guess. Tracey & Amanda (& Jessica) did meet with the teams of nephrology doctors, transplant doctors, and support staff last Tuesday. They are now looking to wait up to a year to do the transplant in order to free her of the steroids -(a pioneering project)- build up her own bodily strength & most of all determine if the same disease would attack a new kidney. The dialysis being done now 3 days a week for 4-5 hours would be replaced by nightly dialysis, done at home by Tracey, if a peritoneal or stomach catheter is successful. Stomach catheters are very susceptible to infection, and the equipment setup is a hassle, but at least their daily lives would be more "normal". The medication schedule with this dialysis is very precise, rigid, and expensive.

10/16/02
Dear Family, Friends & Faithful Prayer Partners,
Well, this is good news for a change, as far as Amanda is concerned. She is getting dialysis Mon Wed & Fri for approx 4-5 hours each time, & is feeling well enough most days to attend at least the a.m. school session at the hosp. The dialysis leaves her weak & drained & often with headaches or nausea. She is on a very restricted diet - potassium & phosphorus now have to be closely monitored, as well as the sodium. Most green vegetables are bad for her (?) and only very small portions of meat are allowed. Restrictive, but a far cry from where she was a few weeks ago. There is still no news on the transplant, except Michael has been tested & David 's test kit has just been sent to him. I don't know how long before the verdict is in, or how long after that the surgery will be scheduled. The NV medicaid insurance is becoming an issue, as they consider you a non-resident after so long. Tracey may have to establish CA residency so she can qualify for insurance there. The ramifications of all that, only God alone knows at this time. Tracey was in the ER for pain & has a severe bladder infection & at least 3 kidney stones. They discharged her, but have her on medication until they can decide how to treat & not make her unable to care for Amanda. We are planning to visit them this weekend, so please add travel safety to your prayers for us, and continue to lift Amanda & Tracey in your prayers for all they need, to be supplied, and for wisdom and courage to know God's plan for their lives as well as for Jacob"s & Jessica's. Thank you for staying with us through everything.
Love, Pat

10/08/02
Dear Family & Friends,
This was going to be a wonderful first-of-many all-good messages about Amanda. She was discharged on Monday p.m., went to school a few hours in the hosp school on Tues. & was very excited about being a blue fairy for Halloween. She weighs almost 55 lbs. is eating on a limited scale, & her bowels have been moving. Tracey call at 5:45 a.m. today to say they have been in the ER since 3 a.m. Amanda has been in terrible pain in her right side & could not stand to be touched at all on that side. The CATscan doesn't show a problem with the appendix, but she is still running a temperature, is slightly disoriented and very uncomfortable. They have her pretty medicated, back on an IV, & she is being re-admitted to the hosp. Tracey is absolutely exhausted mentally, emotionally, and physically. Please keep them in your prayers today for strength and peace, for endurance, patience, hope and renewal of the Spirit that has kept them both going this long. God must love them mightily. Thank you.
Love, Pat

10/07/02
Dear Family & Friends,
Please lift Amanda esp in your prayers tomorrow that her temperture stays down so the dialysis catheter can be replaced. They will have to make a new incision rather than use the existing port, as her tissues are still too fragile. She is not eating, her blood pressure is unstable & her temperature goes up but never down to normal. She is getting weaker from malnourishment & may have to have the feeding tube replaced. The kidney removal was not optional, but we thought the next step would be easier. Each day we learn of more people lifting her in prayer and offering to be tested as a donor - some we don't even know. God is working in all of us thru this terrible thing, & we thank you for being there and sharing and caring.
Love, Pat

9/27/02
Our special prayer request for today is for the strengthing of Amanda's body. She is running a temperature & her blood pressure is not stable. The dialysis is currently being done thru the original catheter in her chest, which is not designed for that - the line is too small & keeps clotting, which runs the time out to 4 1/2 - 5 hours a session & exhausts her. They will go in this week & surgically insert a new line, but her tissues are still very weak from all the steroids, & the dangers of the vascular system collapsing and of infection are a constant concern. The surgeon who removed her kidneys told us her tissues were "like butter" from the steroids & fluid and they could not have waited any longer to remove the kidneys or we would have lost her. Tracey has been unbelievable in her ability to wade thru the information, keep everyone straight on the same page, take care of Amanda, deal with David, & maintain her sanity ( or most of it). Please continue to lift us all up for strength & faith and the ability to hold fast to God's promises. I know there is a reason for all that is happening, & only hope it is revealed to us someday. Thank you all for your continued support.
Love, Pat

9/25/02
Dear Prayer Partners,
The surgery went well last Monday & Amanda started dialysis on Tues. So far they have pulled almost 20 lbs. of fluid off & she is down to 48 lbs or less "dry" body weight. She is very malnurished as almost no nutrition was being retained & she had stopped eating. She is in excellent spirits most of the time & her old sense of humor has returned, though during times of pain she just shuts down. The testing for a donor is more complicated than we knew, involving physical, physchological and social screening. I am still praying that her father, David, will be cleared, and will keep his promise to make the donation.

9/23/02
Dear People,
Please lift Amanda in a special prayer of deliverence when you read this.She is in so much pain, she can hardly talk. She is on the maximum dose of Morphine, which is not blocking the pain, & creates a miserable itching. The Benedryl for the itching is not working. It has been discovered that she is very allergic to Dylaudin. God evidently does not mean for medications of any sort to work on her the way they are expected to. Tracey is almost beside herself watching Amanda suffer, & talking to her on the phone breaks my heart because she tries so hard not to cry, but can't help it. Today is hard. Pat

9/16/02
Dear People,
Just a quick update. Amanda's surgery to remove both kidneys was postponed late yesterday until Monday. We don't know why, but she was all psyched up & really upset & angry at the cancellation. She is still in pain & is naturally pretty scared. They will stay at the hospital until the surgery, as getting up much increases the pain & the fluid level isn't going down at all now, so she is very swollen. We continue to ask for your fervent prayers for Amanda & Tracey most of all, and the rest of us as we wait. I will go to Stanford to be with them on Monday, so will be offline a few days. Thank all of you for sharing this with us. God is faithful and I know He holds the outcome in His hands. Join us in seeking, trusting and accepting His will for our baby.
Love, Pat

9/6/02
Dear Family & Friends,
This is a request for your immediate prayers. Amanda is having her kidneys removed Wed or later this week. She has been in pain for the last 2 days & her kidneys have swollen to the size of an adult's & have stopped working altogether. They are doing blood work on her now, & will perform the surgery as soon as eveything is set up. Her father, David, is scheduled to enter the hosp this next weekend & will donate his kidney if all goes ok - he has not been cleared yet as a donor, but evidently removing Amanda's kidneys right now is not optional. Please keep Amanda & Tracey in your most fervent prayers as things are moving very quickly. Please ask Him to guard our little girl & be with everyone else involved that things will go well. Thank you so much.
Love, Pat

9/5/02
Amanda Update:
We spent Sat & part of Sun with Tracey & Amanda at Stanford. The blood transfer procedure does not seem to be working. They are monitoring everything, but she is getting weaker, more fragile, & responding less to the meds. Despite extreme massive doses of several diuretics, she is not dumping the fluids anymore. She is able to be up some, but does not eat & requires pain meds most of the time. She also has a congested cough & runs low-grade temp off & on. Some of the Dr.'s want to go ahead with the transplant procedures now, & 2 want to explore any & every other possibility. Her options and time are running out. She & Tracey both are physically & emotionally exhausted. I am starting to research transplants from every angle. Please continue to keep us all in your prayers - Amanda, Tracey, our family, the doctors, nurses & medical personnel, and especially who God would use as a donor, if it comes to that. It is only by the grace & strength He gives that we are able, because He is able in all things.
Love, Pat

8/5/02
The surgery was done late last night, the PICC line in her arm removed & chest catheter put in. They hope to start the aphresis blood transfer today& do it again Sunday. She is very weak & in pain. They had to use stitching, as her skin is too fragile from all the steroids to hold the tubes without stitches. One port enters her chest sidways to the arm, & the other is near her collarbone with tubes from each port. Tracey said her neck and back are particularly stiff & she is unable to sit up or cough, has to be "stuck" again for bloodwork & labs now, & is very upset over some blood dripping from one of the ports. She came out of the anesthesia screaming for Tracey & only calmed down after Tracey held her & sang "Cume By Ya" over & over.
A good thing was that her lunch got thrown away last night & of course she had no dinner. When she came to, she was hungry & the Social Work Director walked over to the Univ. hospital cafeteria at 11:30 last night for a bagel w/ cream cheese (Amanda's favorite). She told the staff, "that little girl NEEDS a bagel with cream cheese tonight". Her name is Meg & she has been so good to Tracey & Amanda. At the start of all this she seemed indifferent, but has come to be a good friend. Dani, the head nurse for Dr. Yourgin has also become a true and treasured friend, going far above and beyond her professional role in helping, counseling, loving and caring for them. As you pray for Amanda & Tracey, please also remember all those taking care of them. Thank you so much for being here for us.
Love, Pat

7/12/02
Dear Family and Friends,
Amanda was home with us for a wonderful week before her surgery & returned by Angel Flight Tues. She was admitted to the hospital at Stanford Wed. & is scheduled for surgery today, as soon as they can work her in. The PICC line in her arm will be removed and a catheter placed in her chest to do the blood transfer or aphresis. This procedure will start as soon as she is able to handle it, & will be done at least 2 x's in the hospital to monitor her response, & then once a week as an outpatient. They should know in a month if it is accomplishing anything. She will be getting Albumin (protein) in massive doses at the same time, in the hope her own body will take over. If it works, she will probably be at Stanford another 4 -5 months. This is the last option before they administer I.V. Cytoxin (chemotherapy), kidney transplant being the final option. You have been so wonderful in your support and prayers during this time in our lives. Please pray with us today, especially, that God will be with Amanda, Tracey, and all of us. Ask Him to calm Amanda's fear, to take away her pain, and to give Tracey, & us, peace, and faith, and hope that the ordeal will come to a good end soon. His plan in all this must be far-ranging - it has effected so many in ways we don't even know about. The medical staff at Stanford, the Ronald McDonald House people, the people letting her stay in their guest house at Stanford, the Angel Flight people, and most of all our own family, church family, friends, and community have reached out to us in an abundance of love and caring and been touched in return. May God continue to bless us all as we continue to trust Him.
Love, Pat

6/25/02
Dear Friends & Family,
I know it's been a while since an update on Amanda- short story: email trouble. I actually had 393 messages dating from January to the present that went to a different email address & we were finally able to straighten out. Sometimes something got thru,from you or to you, but mostly did not. I wondered why no one ever answered my messages!
Amanda is bascally still at square one. She has been in and out of the hosp. so regularly, I lose track of the dates. She is able to stay out & on clinic visits with Tracey giving the meds, until her fluid build-up reaches the point of causing seizures & she has breathing difficulty, & then she goes back in for Lasix & Albumin infusions. This has begun to affect her potassium levels & creates heart problems, so it becomes a real balancing act of increases, decreases & what to give.
Her spirit seems weaker & she is easily upset & depressed, understandably. They had planned to fly home for a few days on an "Angel Flight" (an owner of a private plane donates his service for medical flights), but Amanda is not real stable right now, & Tracey is waiting for the Dr's absolute approval. Next Fri. is the girls' b'days, & she was counting on being here to celebrate with Jessica, but of course, her safety is the priority. She still has the PICC line in her arm, which has to be cleaned & changed frequently & aggressively guarded against infection. Please keep Amanda & Tracey in prayer as the doctor's are beginning to have different opinions & treatment plans. We need the wisdom from God's eyes & not our own, to do the right thing. Also, please pray for us for peace and encouragement & physical & emotional energy. This battle is dragging on.
Thank you, Love, Pat

6/12/02
Dear People,
Amanda & Tracey were able to fly home Mon.p.m. for a few days on a friend's freq. flier miles & despite having to keep Amanda pretty much "quarantined" for her own protection, it is a welcome treat for us all. The weather has turned record-breaking hot, but we just stay in & try not to eat too much. (David Allen is back on the roof, so he is really not able to do that). Please continue to keep them in pryer as they return Mon. & the Dr.'s start a new go-round. They still don't know what to do except fight the symptoms.
Love, Pat

6/11/02
Dear Family & Friends,
Please continue to keep Amanda especially strong on your hearts & in your prayers - she & Tracey are having a really hard time. None of the treatments seem to be having any effect on the disease & the symptoms are becoming critical. Even the Dr's admit they are running out of ideas & where do we go from here? Please just lift us up for healing for Amanda, for emotional and physical strength, and for faith to continue seeking what God wants us to do - or not do. We feel so helpless, & maybe that's what we're supposed to feel - so we can know how much we need to depend on Him. We claim His promise to never leave or forsake us & most of all to answer our prayers when we ask in the name of His Son. Join us in that. Love, Pat
Amanda has been out of the hosp. for 10 days now, which is the longest yet since the 1st of april, but is being readmitted today. Her blood pressure is back up & the fluid retention is at 25%. They started her on Prograff last Thurs & are trying to eliminate the prednisone steroids. The swelling is from the disease, so we were hoping her own system would be able to kick in & allow her to eliminate fluid. It seemed to for a while, but has gotten ahead of her. It may be in her lungs this time. Please continue to lift her up for healing & peace & hope & faith for us all. Thank you. Love, Pat

6/1/02
Amanda went back into the hospital yesterday & starts some new meds today. Her blood pressure is way over the dangerous level & the swelling is the worst it's been - we just seem to be losing ground. The Dr thinks she builds immunity to the meds after a few weeks & before they can work. He wants to "pulse" her again (the massive intravenous steroid) & hope the cytoxin (chemo drug) has a chance to work. She is extremely emotional & fragile now, & won't let Tracey out of her sight. We are hoping to get the other 2 kids over to see them for a couple of days, as soon as we can figure out how . Please continue to lift them (all of us) up in your prayers. We could not deal with any of this without your prayers & support & by God's loving grace. Just when it seems imposible, somehow God provides new hope.
Love, Pat

5/24/02
Dear Family & Friends, We were off-line a few days due to server problems. Amanda & Tracey moved into the Ronald McDonald house last Saturday & we were able to spend Sat & Sun there with them. It was a blessing for all of us. Amanda was admitted back into the hospital yesterday, as her fluid level has again reached a dangerous level. She has a painful lump on her head from the edema (fluid) & is retaining about 20% now, which is equivalent to 20-30 lbs. in an adult. The DR. didn't want to wait until her breathing is compromised again before trying to get the fluid off. Her blood pressure is still high at 125/?, but not as bad as 150/? as earlier. She is on high doses of blood pressure meds & anitbiotic and is still dumping all her protein. We are at square one, treating symptoms instead of getting her better. She is very upset & scared this time, so please keep her in prayer for peace as well as healing. She has been so brave, but is geting tired and frustrated. They had planned to let her & her twin, Jessica, attend a children's camp for kidney patients, but the Dr. doesn't believe she is strong enough & she is very disappointed. Tracey is sort of numb; I think prayer is all that is sustaining her right now. Please continue to support us with your prayers and encouragement. Maybe that is God's plan in all this - uniting so many of His children in supplication. I don't know, I just know you lift us up. Love, Pat

5/22/02
Amanda Update - Thank you to everyone for your prayers - they are the only sure thing every day. Amanda is still in the hospital, but the fluid has been drawn off, & patches are being tried to control the blood pressure, rather than regular meds.The staff are monitoring her very closely & she was even able to go into the children's art class for an hour today. We are going over tonight & stay until Sun. & the kids are all so excited about everyone being together. Please keep us in prayer for travel mercies & stable health so they can visit. Love, Pat

5/22/02
Dear Debbie, We are in the middle of everything again. Amanda had to be admitted from the Ronald McDonald House into the hospital at Stanford this morning. Her blood pressure reached 150/117 & the drastic fluctuation is very dangerous. Her fluid retention has caused extreme swelling & she has trouble walking or getting clothes & shoes on. It also affects her balance & she fell again this morning going down the stairs. They are going to try clonodine patches to stablize the blood pressure and prevent any more seizures, but her white blood count should be coming way down from the cytoxin (chemo) drug she is taking,and instead is way up, indicating infection in her body. The doctors just don't know what is going on, or exactly what to do about it. Please continue to keep Amanda in your prayers & that God will send someone soon with His answer. Her little body is very weary. Thank you, Love, Pat

5/19/02
Dear People, Please be in prayer for Tracey. She has come down with a stomach flu bug. They are at the Ronald McDonald House close to the hospital, but Amanda's blood pressure keeps rising, so it has to be taken every hour. If it doesn't come down with medication, she has to go right to Stanford where they can control seizures. Tracey & Amanda can't stay at the RMc House if either one is sick, so it's a "catch 22" deal. Right now Tracey is quite miserable & feels overwhelmed. It seems things move from one crisis to the next, but I know God still has us in His hand & your prayers & support are a great comfort to us all. Love, Pat

5/14/02
Dear Friends, Amanda has regained consciousness - Thank you so much for praying for her. She is still in a lot of head pain & not able to see or function normally, but the other time this happened, she was "gone" almost a whoe day. The DR's saw it happening & will be running tests as soon as she is out of observation & able. Blood pressure & pulse are still way too high. Thank you again - your prayers do work - they bring us together in asking something in His name. Love, Pat

5/14/02
Dear Friends & Family, This is a plea for immediate prayer for Amanda. Tracey just called from Stanford, & Amanda is having another one of those seizure/comatose episodes.She had horrible headaches all night.Tracey just held her until she finally went to sleep, but now they cannot awaken her. The vital signs are reading normal, except for a low oxygen level, but she is unresponsive & has no bladder control. They were waiting for the neurologist to get there when Tracey called Tracey is extremely upset & could hardly talk, but she asks for you all to raise Amanda up in supplication & thanksgiving right now. Thank you - Love, Pat

5/10/02
Dear Family & Friends, Amanda is now in the neurology unit at Stanford & having MRI A & B (?) tests done. There is something abnormal about the reactions on her left side & she has blurring & the halo effect with her vision. She & Tracey are pretty frazzled & apparently no closer to answers than before. The symptoms seem to be increasing & getting more dramatic as they do. Please continue to keep us all in prayer & bear with me for these constant updates. I think they might be a form of release or therapy for me. Love, Pat

5/9/02
Dear Family, Amanda is being care-flight transported to Stanford Univ. Pediatric Hosp. in Palo Alto as I write this. She has continued to get worse and weaker since coming home from there last Mon. night. She had a procedure here for Peritonitis on Wed. which showed negative, but the onset of horrible stomach pain & vomiting episodes took her to the ER here last night & this A.M. Stanford sent a plane to get she & Tracey for ???long. Please keep them & the doctors and all connected in your prayers. We still claim God's complete healing for Amanda, and ask you to put her on your own prayer chains. Thank you. Love, Pat Amanda came home from Stanford Hosp. last Monday night. The plan was for her to get 2-3 weekly treatments here & return to Stanford next Monday for an intensive out-patient treatment of the steroids & Albumin (protein). Yesterday about 10:30 a.m. she fell asleep & could not be awakened. We took her to the ER in a comatose state & a CAT-scan & MRI showed normal. Her vital signs went up & down, but stablized except for oxygen level was low. After steroid & Albumin infusions, she seemed to regain consciousness, and she & Tracey were air-lifted back down to Stanford's PICU last night. Today they are doing an EKG with the early diagnosis that she suffered a seizure yesterday. She has no memory of the entire episode, including the plane ride. Please continue to keep Amanda & Tracey in prayer for strength & peace and faith in God's healing grace. Love, Pat

4/26/02
Thank you for your continuing prayers. The Dr.s at Stanford did a biopsy this p.m. & hopefully the results will help them help her. Please pray that the low blood count, fluid buld-up around her lungs and any other symptoms will go away. She is on heavy steriods intravenously, Lasix, a diuretic, and Albumin to flood her body with protein. Please pray with us for God's healing hand to completely restore her, and for faith and peace for all of us, esp. Tracey. Love, Pat

4/19/02
Just a Note; Amanda is being admitted to Stanford Univ Hosp. today for treatment to get her fluid level down & further testing - she took a turn for the worse Sun & Mon. If the stronger steroid thru IV doesn't work, they will do a biopsy to look for or verify the specific disease Amanda has of nephrotic syndrome?????? She & Tracey took off this a.m. to drive to Stanford, about 5 hours away, & supposedly Tracey can stay in the room with her. Please keep Amanda & Tracey in prayer for safe travel, good medical results & some answers. We are praying that Tracey's work at Univ of Reno will not be jeopardized by her absence, and the Hospital will work with her on the financial end. Also please keep the Dr.'s & all in prayer for the best they have to offer. I know this is may be more specifics than you want, but these are our needs just now, and the things we are praying for. Thank you for continued prayers and support. Love, Pat

4/18/02
Just a note to thank you again for prayers and encouragement. Amanda seems to be gaining ground. Her weight is almost within the normal range and the protein level in her urine has shown a slight decrease. She went back to school today for the first full day (we hope).She tires very easily, shows some edema and is NOT happy about eating food with no sodium at all, but we are all hanging in. Please keep her in your prayers. Love, Pat

4/10/02
She was admitted to the hospital yesterday as soon as the testing permitted & more tests were done there, trying to avoid a biopsy. We don't have a concrete diagnosis, but nephrotic syndrome: Minimal-Change Disease is what they are treating. She is still very swollen, esp. her feet & legs, and she will get worse before getting better, but the doctor seems pleased with her progress. He thinks it was caught very early. (you couldn't look at the poor little frog & not know something was wrong) She will be on prednisone (steroids) for at least 12 weeks, and a controlled diet. The prednisone will create Cushings Syndrome which causes the moon-faced apprearance. Hopefully she is in the 20% who only have this once, versus the others who go thru life experiencing chronic episodes and kidney failure & other organ damage. Thank you so much for your prayers and support. God has given us a peace and sense of offered prayers - we know He is in control. Love, Pat

4/1/02
Please put Amanda, the "oldest, biggest" twin on your prayer list. She had the flu several weeks ago & hasn't been quite herself since. Tracey took her in for a checkup today, & something is wrong with her kidneys. They are not functioning right & she is experiencing stomach pain, lethargy, lack of appetite and full-body swelling. She weighs 14 lbs. more than Jessica, rather than the usual 4 -5 lbs. She is having bloodwork done as I write this, & the pediatrician immediately called Stanford University Hospital for feedback. Tracey will take her back to the Dr's office as soon as the lab tests are finished today. I will keep you informed. We ask for your prayers for Amanda and us. Thank you. Love, Pat