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,