April 11, 2008 Yes it has been almost 1 year since my update. No excuse except to say that it has been a very busy year. Nicki has had several difficult pregnancies and miscarriages and is now 33 weeks along in a difficult high risk pregnancy. She was in the hospital last night having pre-term labor and was given medication to control the contractions. She is back home on bed rest and with the prescription of the same medication. Hopefully, she can last a few more weeks to give the best chances she can to her son, Aiden. The past year has been very full with family issues and events and a long, difficult illness with Alex’s father in France. He passed away February 8 and will be sadly missed by all of us. Alex is having a hard time coping. So we have had a difficult trip to Marseille and Corsica where he was laid to rest in his village. The rest of the family is doing relatively well. Mia is finishing her 3rd year at Loyola Marymount in LA. Julie will graduate Santiago High school this year.  We continue to work for the practice. As far as AMY goes, she continues to improve each day, each week, each month, and each year.  She continues on her EX-Jade to reduce the iron on her liver which we monitor monthly with blood work. Everything besides her iron levels looks absolutely normal. We are truly blessed and fortunate. She will have to have another MRI to see ho the levels are looking in the liver.  But happily everything else looks fantastic. Amy has done 2 seasons of softball and has been a fast learner and enjoys the game a lot. She has been little miss traveler this year. We were in St. Louis for Christmas for 2 weeks. For Spring Break she went to Washington DC for a class trip and turned around and went to New Orleans for a Cajun Baby Shower! It was a lot of fun! We are just hoping and praying for Nicki to have a safe delivery and healthy baby!   Although I am still not keen on being known as a Grandmother (just the idea makes me feel sooo old) I feel like I have not yet mastered motherhood much less being a Grandma……..grrrrrr Anyway that is our lives in a nutshell! Again, I apologize for the few and far between updates. Time just flies so fast and keeps us really busy! Thank you again for all of your kind thoughts and prayers in the past and currently. Our lives would not be the same without them! Becky April 27, 2007 Well I really have no good excuse and I apologize for the long gap in my updates! Between work, school, traveling, etc……. Well I just didn’t have the energy or time to tackle with the technical problems the site had confronted me with! I am really sorry!!! Anyway, I am sure you are wondering if we fell off the face of the earth but we have had quite a few exciting moments since I last updated! I will not bog you down with boring details!! First of all Amy is doing GREAT!!!! As you can see on the front page, one big reason Amy is doing so wonderfully is because of this selfless, giving woman you see in the pictures. She is Jennifer Myer! Our perfect match! She is the one with the beautiful smile and a heart to match! We could not and will never be able to express enough gratitude to this angel sent to us from a far away place! Our lives have changed so much in the past couple of years and we are filled with hope for Amy’s future! Jennifer and her family sacrificed more than they can ever imagine without realizing the impact it would have on one child and one family.  I think by meeting us and seeing the healthy girl Amy is today and hearing how different our lives have changed in just a few years from constant visits to the hospital, transfusions,  Chemotherapy, the transplant, weeks in isolation, the long hospital stay, the worry through the healing period. Thanks to Jennifer and her perfect matching DNA, the complications were virtually inexistent!   We are so lucky and so GRATEFUL to her for the gift she has given us! She and her husband James and her son Owen all sacrificed their precious family time (even though it didn’t seem like much to them) for one little girl that they never even knew! How wonderful is that! Words cannot begin to express our feelings to these kind, good people. Now Jennifer is blessed with another young son and is the mother of two. Needless to say, she is a great mom and Owen and Nate are blessed to have such a giving mother!! May God bless them and watch over this precious family. Please keep them in your prayers and Thank God for sending them to us when we truly needed it most! Amy truly thinks these two boys are her brothers. Jennifer and I thought this a bit peculiar. But when Alex and I talked about this, he had said off course Amy would think that way; Jennifer’s sons are part of her and Amy also has a part of her! And what an important part of her ………She has given her a new lease on life and has given hope and faith to a family that truly needed this miracle! THANK YOU JENNIFER! THANK YOU JAMES, OWEN AND NATE! GRATEFULLY! The Carli’s Ps We have had no real big issues to complain of. We are still working on the iron overload and thank goodness for the Exjade; The liver enzymes are finally coming down along with the iron level. We will be getting labs done in May/ June and another MRI to see the levels of iron in the liver and heart. Amy will have to have her next set of immunizations around July. She is finishing the 6th Grade and has been doing relatively well, keeping up with her grade level after the past few years and absences! So we are almost a normal family!!!! September 14, 2006 Hello everyone! We are pleased and really excited to announce that our donor has contacted us!!!!! Yes, this selfless, generous person finally has a name and a life attached to her! Amy was really tickled when I told her! This kind woman’s name is ……………drum roll please……………………… Jennifer Myer      !!!!!!!           :) She lives in Connecticut! Her husband is James. She has a 4 year old son named Owen and a new baby on the way! I was sitting at work going through my e-mails yesterday and was totally taken off guard. I was sort of dismayed the last few weeks because we still hadn’t heard from the donor. We sent our paperwork back in July upon the first anniversary of Amy’s transplant. I called Edna several times to see if she heard anything but hadn’t as of yet. I was worried that the donor preferred not to be contacted. Happily, it turns out that sometimes the bureaucracy and paperwork has to go through the correct channels. When I opened the e-mail I was so excited! Her e-mail was short and to the point! I couldn’t believe I was actually getting a correspondence from the person who made such a profound change in our lives. Needless to say it made my day……. and I am still in a state of euphoria! Well as all of you know I have a tendency to be a bit wordy when it comes to updates and e-mails. Jennifer is probably cringing right now. My first response was pretty long but as she said, it broke the ice and we have now corresponded several times. Jennifer is a Psychiatrist and she probably thinks I am a nut case. But at least I am a grateful and very happy nut case!! So tonight everyone can thank God and put a word of special thanks to him for Jennifer! We are so blessed! I will try to post more this weekend!!!!  Right now Amy needs help with her Math gggggrrrrrrr. Our favorite subject!! She is swamped with homework tonight and she is a bit cranky right now! You all have a good night!!! Becky   :) August 15, 2006 Hello everyone!! I know it has been a long space since updates! We have been real busy enjoying our summer to make up for last year!! Boy it has been great! A year ago at this time we were still not out of the hospital! It seems hard to believe! Well we truly made up for it and spent Amy’s “transplanniversary” on a land tour and cruise of Alaska!!!! It was awesome! We spent it with lots of members of my family and it was super! Amy went to Disneyland for her birthday the week before and she has gone back to camp with her sisters. She is going to be in shock when school hits us! Amy is doing well. Between our outings we managed to get her phlebotomy done. They took another 350cc out on the 3rd of August before heading back to camp. She got a bit dizzy this time since they used an adult needle to draw the blood from. Since they did the procedure like a donor would do it went way faster. Thus making Amy a bit dizzy! We are used to getting that amount of blood in a couple of hours and this time it took about 20 minutes.  We will check with the doctor to see if this is a better way. Let me tell you Amy was not happy when she saw that big needle coming! Her lab results dropped again to our frustration but the Doctor doesn’t seem to be too discouraged but he is going to check with the doctors in New York to see why these liver enzymes don’t seem to be going down. The iron is slowly but steadily dropping which is a good thing. We have to wait and perform these phlebotomies a bit longer and then he will schedule us for the MRI at Children’s Hospital in Los Angeles. The iron levels are still pretty high so I am not sure how long we will have to do the blood removal procedures. Dr. Young did inform me on our next visit that Amy will have to begin the re-immunization process and she was not happy to hear that! We are all surprised at her reaction after everything she has been through. She says she is not going to do it! She said she heard she will have to have 12 shots at one time! I told her that is not true! Anyway if you all could send some words of encouragement to Amy I would appreciate it and so would Dr. Young. He did say to start getting her mentally prepared for them. Yikes! She goes there on August 28. She will have to have the phlebotomy first in the morning and then to see him for clinic and schedule the immunizations and also begin them that same day. She is not happy because the following day is her first day of 6th grade. Anyway, your encouragement would be much appreciated! I will try to get some photos up on the site with pictures of our happy and well deserved summer vacation!  Life has been good and we are truly blessed!! Thanks again to all of you who have been so wonderful and supportive during this whole process!! Becky  :) August 14, 2006 - Testing Site June 26, 2006 Finally! Yes an update! I know it has been a long, long time! I truly apologize! I have no other excuse but to say life has been pretty busy the last few months. It has been a bit of an effort getting Amy readjusted to the discipline of school and catching up on a half year’s work that she missed….especially MATH!  Grrrrr But school is finally out and we are really happy and relieved. Thank you to Mrs. Ward who was so helpful with Amy in school! Amy did manage to do okay for someone who had missed quite a lot of the basics over the past couple of years. These things we can catch up on. The most important thing is her health! And on that front we are looking pretty good. Amy has been going to the blood bank once a month since March to “blood let” She is up to 300 cc per session. Except for last month her veins were pretty shot. They had to try 5 times and the vein kept blowing or rolling. Grrrr So we gave the veins a break. Last week Amy gave her 300 cc and let me tell you she did super! Nicki was there and was also surprised at how well Amy reacted to the needle. It went perfectly. Thank you to the girls at the blood bank for your patience and care for Amy. It is tough to do a kid’s veins. And they are really improving on Amy each time! Amy’s counts are pretty good. However, since we stopped the steroids a few months ago, her liver enzymes have been slowly creeping up! Dr. Young said if it continued on that trend, it is a sign that a mild GVHD is still lingering and we may have to put her back on steroids. Amy really didn’t like hearing that. She did ask if it could wait till after summer if things weren’t better and he said that was fine. The iron levels are still high and we are waiting to do her liver/heart MRI after at least a few more of these “blood lettings” We are watching her levels of Ferritin (blood iron) which are still high. Once we see a trend of those numbers starting to go down, then we will do the MRI. But like Dr. Young said, it took over 50 transfusions and a couple of years to get up that high so it will take some time to go down. We will wait a little while before considering using a chelating drug to help her rid herself of this iron overload. The reason we have not done that as of yet is because of the liver enzyme levels and the fact that Amy is still reasonably early after transplant. We want to add as little “ingredients” to the mix to make sure she is as stable as possible. Dr. Young is pretty confident that she is on the right track. The other factors in the blood are good. Her Hemoglobin was 13, her white count was 5. Her platelets are still a bit sluggish at 149, which is bothersome for me but could be due to several factors. The important thing is that Amy looks and feels great. She has been swimming and really taking advantage of the summer she missed out on last year. It is so hard to believe how different our lives are compared to the last couple of years. Especially from last year! I feel so blessed when I see how far we have come! So we are approaching her 1 year anniversary! Or as Heather Monica called it ……her “TRANSPLANtIVERSARY”  Amy’s transplant was performed on July 16, 2005! Amy will be 11 next week on the 6th of July and this year she won’t be receiving Chemo on her birthday. What a difference. Amy went to camp for 1 week with the blessing and okay of Dr. Young. I was scared too death since the last time she went almost 3years ago, she came back with the first signs of her illness. As everyone has said, it was just a coincidence but that really traumatized me! But she went to camp yesterday, where her sister Julie is also attending and Mia is now a monitor! So that made me feel better! In a few weeks we are going on a cruise to Alaska and it is the perfect time for us to celebrate her year anniversary!!!!!!!!Yippee!!! So if you don’t hear from me for a while, it is because I have to get prepared for that trip as well as work! My house feels pretty empty tonight but I am so glad Amy is able to feel like other kids and have some fun this summer! By the way, would everyone out there pray for a little girl, Katie Trebing out of New York who has just gone through the same BMT as Amy! She seems to be following a good course as well but they sill have a few hurdles to jump! Also say a prayer for Kylie Jae who you see on this site. She had her anniversary on the 5th of May, Her transplant went well but they are still overcoming a lot of big health issues and they could also use your prayers. And also when you are praying for her put a word of Thanks to God for Kyle Jae’s mother, Heather Monica who really helped us with our journey! She has to be the strongest woman I have known even though I have never met her in person! But also say a prayer for those families who have not been as lucky as we have been and had to say goodbye to the children they loved so much. And last but definitely not least, I want to thank God for Amy’s donor! We are starting the process of seeing if she would consider communicating with us. (We have to wait till after the year is up at least)I know we want to meet her and thank her personally for the gift of life she has given back to Amy!   And again thank you to all of you who became part of the marrow registry, and to those of you who donate blood and platelets to help people who really are in need!  It does make a difference!   Thank You Becky Carli March 24, 2006 Well, low and behold, I am finally getting time to do an update. There has been so much going on over here that I always think I will have the time but time just keeps slipping away from me. I am really sorry about the lapse of updates. Last time I updated everyone, Amy started her big social transition back to school. It was a bit more trying than I would have thought. It took her a while to get used to the daily discipline. She was used to having no bedtime, no hours, no schedule, etc. She also had to find a way to fit back in socially with her schoolmates. Since it was mid year, girls usually have found their little groups and Amy had to find her niche. So she had to slowly adapt to that as well. Her hair was still pretty sparse and though most of the kids were used to it by now, you still have a few comments by kids that don’t understand. I don’t know how many times I have asked how old my “son” was or questions about my son….Amy has a couple of younger kids who didn’t believe she was a girl. But she just takes it all in stride and has other things she focuses on more. Studying and homework were one area she had to really make and effort in. She is slowly getting adapted and her school and classmates and especially her teacher have been so good with her. We had to get permission from her Doctor to authorize her to dissect a Cow’s Eye….(gross) which she really enjoyed. I just wish I could be more helpful in the “math” area. I am so bad at that abstract math and Algebra and all of that! Yikes Thank goodness her teacher is tutoring her again 2 days a week. We got Amy’s report card. Including the low grade she got in Math, she still made the “B” Honor Roll. Yeah Amy!  She said she is going to post the bad grade in Math on her desk to make her focus on getting it better. She has made so much progress and now we are feeling more like a normal, “crazy”, school year. It was a big transition for me as well. I had to get back to balancing work and school and her health issues. In P.E., Amy really wanted to do the “Presidential” Fitness test, which includes running 1 mile. We had to get permission from her Doctor, (poor Dr. Young ….I pester him all the time) who gave his permission but insisted they encourage her to stop if she looked fatigued. Well she was able to complete the mile in 4 minutes and 32 seconds. (One time I said 4 minutes and 33 seconds and Amy corrected me for that 1 second. Amy has been on the basketball team and although their team hasn’t had a winning season, they all show effort at learning new skills in basketball. The first game Amy looked so fragile and tired easily. That was the end of January. They played this past Saturday and we could see a marked difference in her stamina and energy. She actually got in the middle of the plays and stole the ball a couple of times and got a few rebounds. It was a huge difference. They didn’t at first qualify to go to the playoffs but by some miracle the team was invited to play in the playoffs this weekend. Now as far as Amy’s health issues. Amy had been dealing with the minor GVHD. She was started on a regiment of steroids. They had to start the dosages high, which made concentrating more difficult and her energy level was really high. So was her appetite. She was hungry all of the time. We had to get the school to allow her to go ahead in the lunch lines because she was starving. We have been slowly tapering down. 2 weeks ago, we had a visit with Dr. Young, who tapered her off even more. Amy had really begun to get a bad case of acne on her face that was due to the prednisone. So we were happy to have her slowly come down off that. We are currently on 10mg of prednisone every other day for the next 2 weeks when we see him again. We (including Dr. Young) were a bit disappointed that after going through that regiment of Prednisone, her Liver enzymes were still a bit high and her Platelets had dropped…..again. He said it was frustrating but assured us that by the year anniversary of her transplant, things should balance out. Then we got to begin the process of removing blood from Amy’s system due to the high levels of iron in the liver. I was a bit nervous and apprehensive about this process, since it is much like when an adult gives blood. The needles a big and Amy has been pretty traumatized by needles in the past. We went to the CHOC blood bank. They were really patient and tried all they could to make her as comfortable as possible. They used several large syringes instead of the customary bag which requires a larger wider needle and used a large butterfly instead. It required more work on their part but they wanted Amy as comfortable as possible. Well, they did inject a bit of lidocaine first around the vein the chose to use. Then we got really nervous because Amy’s vein kept rolling. They tried for about 15 – 20 minutes. And they felt so bad and Amy was getting agitated. They had to start over with a new vein. That is when Amy told them the new selection is the one the nurses usually went for without problem…….ggrrrrr. Any way they finally did get the vein and it took about 45 minutes and she gave 200 cc. of blood. She didn’t scream or have a tantrum. She was scared but was able to struggle through it. Now that she knows what the procedure is, she is sure she can do this monthly. Yeah! I was relieved to see that it wasn’t as bad as I had imagined. Well we go back on April 3rd. Hopefully everything will go as well. We are waiting on some more of her lab results, including her Blood type. By now Amy should have changed blood type to AB- ….The most rare in the world. That is okay…..as long as she makes the blood! Hopefully her platelets will have come back up. This is a bit concerning to us but we are hopeful they will. Well I have to go make dinner now. Amy has her friend Ryanne spending the night tonight and tomorrow they have their playoff game. So I have to get back to my hectic life. I really apologize to everyone for delaying the update. I know it is probably way too much information. I get detailed because there are several parents who are going to begin or are going through the Transplant process and they really like to see some of the details to reassure them. I know it has been so beneficial for me to follow Kylie Jae’s update. She is about 3 months transplant before Amy and I watch her case to follow and measure her progress. I was a bit concerned: Kylie Jae was doing really well the first 6 months after transplant (just like Amy) and boom; she was admitted in the hospital for over 3 weeks with an array of issues. So I was a bit nervous. She is out now and doing pretty well from what I understand. She had a lot more health related issues than Amy but manages to struggle through them. Her mom is a trooper. I don’t know how she does it. Well, in a way I do……she will do whatever it takes to save her child. And she certainly does and she helps so many other parents along the way! Please pray for her and Kylie to keep up there faith. Some times that is all you are left with. Well, I don’t mean to go on forever. So much has happened in the past few months, I am sure I have only touched the surface……..but don’t worry, I will stop for now!!!! By the way Amy has been given the okay to fly. Of course, she chose to go back to Missouri to be with family!  They have all been so great! So we are going for Easter! We both need a little break! It has been quite a journey! Good Night! Becky January 9, 2006 Hello Everyone, It is official! Amy is back to school! Yesterday she finished getting all of her things organized and prepared! Nicki came over and helped Amy label her supplies and last night we boxed everything up and boy it was a bundle. She wanted to bring everything but the kitchen sink. She could hardly sleep last night she was so excited. She finally fell asleep around 3:00am and woke up around 6:00am. With Julie’s cooperation, we got Amy to school at about 7: 00am. I was able to get there early enough before normal drop off hours so I could park fairly close to her classroom to unload everything. We met with her teacher and I took a couple of pictures and left Amy my camera so she could take pictures of her first day back with her classmates. She brought the hamster that she gave to her class as a gift for their prayers and her long absence. I then decided to leave her so she could treasure the moment on her own. It felt like kindergarten all over again. I was a bit reluctant to leave her but I didn’t want to embarrass her. Well I picked her up at the close of school and the teacher said her first day back was great but Amy did look really tired. We stopped by the school office and spoke with the secretary of the school and Mrs. Lister, the principal. The whole school was so happy to have Amy back. Amy was also happy to find out she gets to be on the basketball team even though tryouts were back in December. She was really excited. Tomorrow is her first practice. I am a little concerned because I do believe it is a lot in the first week. Amy tells me not to worry. I am sure the coach will take care of her. Well we are home now. Amy is doing her homework. It will be great if she is that cooperative from now on. This will be a big transition for everyone. We are all a bit weary from everything but it is a good fatigue. Not everyone gets a second chance at life! We have been so lucky and blessed. It is so hard for me to believe how far we have come and the journey we have been on from when this all began. I am so relieved and so happy. Well Amy needs a little help on a Math problem……..now I am going to panic…… I am really bad at Math. Everyone have a great night! Becky January 5, 2006 Hello Everyone, Amy had her appointment with her hematologist yesterday and of course she had to have more lab work, which by the way, Amy was great on this draw and they had to take a few tubes. We got the results back today and the results pretty much confirm the diagnosis of GVHD. So we are glad she has been on the steroids to tackle it. (Although I may go nuts) Her liver levels have dropped significantly. The AST went to 74 and the ALT (the more important one) to 231.Her platelets went back up to 166 which is also more reassuring and tells the doctors that the GVHD was affecting this as well. They are a bit surprised to see that it did not affect her bilirubin, which it usually does but like I have said before, Amy is “special”. Amy also put on 3 kilograms, which is partially due to the prednisone. So it looks like we are on the right track. Eventually these numbers will slowly normalize. We have a little ways to go. We are still waiting on her neucleo-citate (I still can’t figure out that word) level, as well as an updated iron level in the liver which was sent out at the time of her liver biopsy. But, like I said, it seems like we are headed in the right direction. By the way her Hemoglobin was 14! We haven’t had a blood transfusion since October. Her marrow is doing it all on its own! This is so Great! He is dropping the prednisone dosage…………Thank You! Thank You! Thank You! She has been insanely hyper and a bit moody and temperamental, (to say the least) But if this helps I think I can clean my kitchen one more time from the after effects of Hurricane Amy! BUT THE BEST NEWS OF ALL……ESPECIALLY FOR AMY! (And me too) AMY HAS BEEN GIVEN THE OKAY TO GO BACK TO SCHOOL!!!!!!!!!!YEAH! YIPPEE! HURRAY! THANK GOD! I AM DOING A JIG! AMY IS SOOOOO HAPPY! It is the escape from the old folk’s home! I have never seen a 10 year old so happy about going to school!  She goes back this coming Monday. Today we took her school supply list that she has been treasuring and keeping a watchful eye on for months now and we went school shopping! I have her uniforms on there way and she is ready to go! Big Happy Moments like this make the more difficult times seem so small! So thank you all again for all of your support through all of the steps it has taken to get to this point! We are unbelievably grateful and we are so truly blessed!   I wish everyone a belated Happy New Year!!! Take Care Becky :) December 25, 2005 Well I guess I don't have  to tell you what my favorite Christmas present was this year! We are blessed to have a healthy child with a hope for a better future! That is a gift worth thanking God for! Thank all of you for your prayers and good thoughts! Thank God also for giving us access to the best medicine this country has to offer along with the gifted Medical Professionals who have been treating Amy! God Bless All of you and Merry Christmas!! December 23, 2005 Hello everyone! I just wanted to let you know that Dr. Young called late this afternoon. He spoke to the pathologist regarding Amy’s liver biopsy. She does have a mild form of GVHD in the liver. The 5.nucleo-citate something?? (he said it really fast) went from 11 to 60. Since the platelets are low and they could not see any signs of virus in the biopsy, the diagnosis is pretty clear. It is very rare to have it only in the liver, with no other clinical symptoms but he explained that GVHD can be a bit different in each case. He was surprised for example that it affected her liver enzymes but her bilirubin remains normal which is not usually the case. It is usually seen along with signs of it on the skin and usually some diarrhea are also associated with it. But Amy is “special”! He said we had to start steroids to treat it. So he called in the prednisone and we began it tonight. This is going to be fun! Grrrr! Not only does Amy have her Red cells back giving her plenty of energy, we get to top it off with a high dose of steroids the first week (60mg per day). It makes her pretty hyper! Yippee! It will also make her swell up again. It is also a bit hard on the stomach so she will be taking her Zantac twice a day. Well it is worth it, if it takes care of the GVHD. So I won’t complain, (I will just self- medicate……..heee heee).  We will slowly taper off the prednisone as usual and will probably remain on it till end of January. We see him back on the 4th of January for more blood tests to see if it is working. Then we will see from there. But he did say it doesn’t look to be anything too serious and the rest of the liver looks pretty good in spite of all of the transfusions. So it is still pretty good news and it is treatable! So we just have to follow instructions. It is just another little bump in the road. The worst does seem to be over. He also said it is probable Amy will be able to start school next semester. She is really anxious about that. But nothing is written in stone yet. Keep up the prayers and good wishes! Have a Happy Christmas!   Becky December 22, 2005 Hello everyone! Yesterday, Amy had her liver biopsy and then we followed up with her IVIG that took 8 hours to transfuse. We got out of the Hospital at around 9:00pm. Everything went pretty well. The biopsy is quite amazing when you think that when Alex did these type of procedures when practicing General Surgery back in the day, you had to open the abdomen and take a wedge of the liver. With Amy, Interventional Radiology went through the jugular and with radiology guidance, went down to the liver and retrieved the specimens. It is truly amazing how far they have come with this. And it is done in such little time. It took more time to prep her and for anesthesia than the actual procedure. Cool Huh? Now, Alex still thinks it may not be as accurate but for this type of diagnosis is well used since it not as invasive and much less bleeding and far less complications. They said it would take a couple of days to get the results back on the liver. So keep up the prayers. As far as the IVIG, it went very well. I was a bit afraid since the last time Amy had a reaction to the procedure. Dr. Young changed the dosage of the drug a little lower and they ran it a bit slower. So it all went very well. This should boost her immune system. Well we got home and back to as normal as possible. Now it is time to get ready for Christmas. Amy has a little pressure dressing and is running around with a bunch of ideas and looks real good. It is amazing to see that. Now I have to get to my accountant’s office to work on some end of the year issues…….gggggrrrrrrrr. Amy is coming with me!  Fun Huh?! Tonight I will wrap some more presents and try to get in the Holiday spirit. I couldn’t be any more blessed that Amy is doing just fine. After spending the day at the Hospital yesterday, and seeing some of the children who are still there from when we were there back in July and August, looking at other parents hanging on by threads, desperately trying to save their kids’ lives, really humbles and lets me know how grateful I am. We are truly blessed. Some of the kids didn’t make it and new kids coming in with new rare illnesses and sad situations and looks of panic on the parents’ faces. Say a prayer for theses families. It is so tough to watch! You all have a great day and no matter what you are going through, it could always be worse. I will keep you updated, when I get more news! Merry Christmas and Happy Holidays! Becky December 19, 2005 Hello everyone! Well Amy went to see the Doctor today and we just got the majority of her labs back. Her antibodies have dropped to a lower level which is not uncommon at this stage of transplant but since the flu levels are really high out here, they don’t want to risk her recovery. They are setting up to do IVIG (IV ImmunoGobin) to boost up her antibody levels as a precaution. This is the thing Amy had a strange reaction to before her transplant. But knowing this they are going to change the type of IVIG a bit. He feels this is the prudent thing to do.  Her liver levels went back up ……again; grrrr and her platelet levels took a bit of a dive---- double grrrr.. These 2 things put together could be a sign of GVHD (Graft vs. Host Disease) in the liver. It would be a rare thing but now they would really want to rule it in or out. If it is the case, they can then treat it while it would still be early. If not, they could check some other issues related to the liver such as her iron levels and other things to get a more detail idea of what is happening in there. They want to be on the safe side. So our hematologist is getting in touch with the Gastro-Interologists to possibly coordinate the 2 things.  So I will find out more, when he gets back in touch with me. He really stressed that it is nothing to worry about. It is not uncommon at all to have IVIG within the first year. Especially now that we are in the middle of a pretty bad flu season. As far as the liver biopsy goes; we really have no other choice but to see what is happening inside the liver. I just have to convince Alex of this……….GRRRRR! Hope you are all ready for the holidays. I am still jumping through hoops to get there. But the most important thing is Amy’s health, so any thing on the side is just detail at this point. By the way, the good news is Amy’s HGB is 14 and her white count is 4.3. Great news! You all take care Becky December 11, 2005 I apologize for not getting back to you earlier this past week for an update on Amy. As you know, she had an appointment with Dr. Young and had her labs repeated. The news is pretty good. The liver enzymes dropped about 10% but they are still on the high side. So we will retest again on the 19th. Amy was a little apprehensive about the blood draw and it took a little time and coaxing but the new anesthetic helped a lot. The good news is her hemoglobin is up to 13! Now she is in the normal range!  Her platelets went up to 128 which is good news. We would like to see them go up more. But it is still good. Her white count was up to 5.6. She had a pretty bad cold and when the Doctor examined her, I told him she had an ear ache in the left ear, which he found to be infected after removing some stubborn wax that was obstructing his view to the ear drum. She is on antibiotics for the infection and is doing well. Her cold is now gone. It has been so nice without the broviac. Her stitches are now out and she can bathe without having to cover the area anymore.  I t was a pretty hectic week but we muddled through and I took Amy and Coral to Disneyland on Saturday………Not the best idea…. It was packed and also a bit cold (for us Californians). They had a good time although Amy was a bit bossy. She needs to get back to school for some social interaction. She is used to being the center of attention. Grrrrr.  One more month and she will go back to school and have a break from us “old people”. Now that her levels are normal, she has an energy that is hard to believe. She also uses this energy to make messes, especially in the kitchen. She tries the new things she sees on the food channel, but isn’t too patient in following the exact directions. I think she is trying to compete with Julie to see how many disasters she can make in the kitchen. AAAAHHHH! By the way, today Julie moved her great talent into the laundry room. She didn’t want to wait for a load of laundry to go through the spin cycle so she put the totally drenched laundry into the dryer. There was so much water she burned out the motor. She came to me saying she had a little problem. (yeah…. little) She dumped quite a bit of water on the floor and it soaked the bottom of a brand new 20 pound bag of cat food I just bought but she forgot to tell me that part. Later on, I was getting ready to put the cat food away and when I picked it up, all of the cat food fell through the bottom of the bag and onto the floor……. grrrrrrr. That was fun to clean up and I smelled so good after that. But again, these are small problems, compared to what we have been through. We still continue to be grateful for Amy!!!! We are so lucky that she is doing so well! I hope to update you soon with more good news. Becky :) November 28, 2005 Hello everyone! Well at last the Broviac is out! Yippee! No more flushing with heparin! No more changing caps and patches once a week! We went to St. Joseph’s Outpatient Pavilion where Amy went under a light sedation and had it removed. All went very well! She did complain about not being able to eat. She didn't have the procedure till 2:00 and had nothing to eat or drink all day, so if any one knows Amy, she gets really cranky without food! And the nurses didn't  impress her with the popsicles they had to offer her. She wanted real food after the procedure! Well after I fought with our infamous California traffic, she finally got her fix of Taco Bell! Her tummy is happy now! :) They also performed more blood tests to check her marrow function and liver tests again. The marrow is doing GREAT! Her Hemoglobin is 12.2!!!!!!!! The Retic is 1.5 and stable. The white count is 3.8. All good news! The platelets however, dropped again from 110 to 96. We will continue to watch this, but the doctor didn't  seem overly concerned. Her liver tests were not as good. Her AST went up again from 191 to 340 and the ALT from 298 to 600. That is the highest we have seen with that number. I spoke with Dr. Young and he said there is not much more after these tests that we can do to find out what is going on with these liver enzymes, short of sending her back to GI and have them do a Liver Biopsy. But he wants to wait till he sees us again next Monday and test again. If they go up again, he wants us to go to GI, if not, and they start to go down we will continue to monitor these levels. His first impression is that it is probably a virus and hopefully will start to subside. We just have to wait and see. Luckily the Albumin (the protein in the liver) that was low last week has come back up to normal, which was reassuring. There were a few other numbers that were a bit off that had never given us a problem before but since Amy has had a little cough and runny nose, we will check them again also on Monday. In short, for the most part, things are going pretty well and as expected. We still have a few little bumps along the way. Hopefully these bumps will smooth out! I will keep you updated as we go! Keep up the prayers and have a good night! Becky November 22, 2005 Yesterday we saw Dr. Young and had the Liver enzyme tests and panel repeated along with her CBC and Marrow tests. We got some of the results back last night and Dr. Young called me to explain some of them. He said it was a “mixed bag”. The HGB was looking good at 11.0 which is the highest it has been, the White count finally went up to 4.0 which we haven’t seen for some time, which is also good news. He was a bit concerned about the platelets which dropped again to 110. They have done that a couple of times and he will keep an eye on that. The liver enzymes went down;  the ALT from 454 to 298 and the AST from 250 to 192, which were good drops but he would have liked to see a bit more of a drop. The viral thing Amy seems to have had could still be the culprit on that. He was more concerned about her Albumin level which dropped to 2.4. This is a protein level in the liver. We need to monitor this also. Since the Ultrasound seemed to show the liver and spleen somewhat enlarged but not too bad and  since these enzyme levels were still a bit high and the protein low, he cannot rule out a future liver biopsy. But he said it was nothing urgent. We have to be patient, since we are still within the first  6 months post- transplant. Since it may take some time and the HGB is looking more stable, he has Amy scheduled to take the broviac out next week with the vascular surgeon. Which is a bit scary but very good news, especially for Alex and Amy who are really excited about this.  Amy says she will be fine with the weekly blood draws as long as she has the EMLA before. Before she has the surgery to remove the broviac, Dr. Young is going to have them draw tests prior to double check on the blood levels that are a bit concerning. So that is it till next week.                                    Now Amy and I are going shopping for our turkey and we will be cooking for the next couple of days and enjoying the food and being grateful for all we have. Thanks again for all of your good wishes and prayers and have a Happy Thanksgiving! November 19, 2005 Hello everyone! Well this week Amy had her consult with a Gastro-Interologist. And of course, more tests. Besides more blood tests, we went for an abdominal ultrasound of the liver, spleen, gall bladder, pancreas and kidneys. This test was performed at 6:15am on Thursday. How fun! They do this early on kids because they cannot eat or drink after midnight prior to the test. To get there on time, we left at 5:00am because of our lovely Southern California traffic. Everything seems pretty normal. Her liver is enlarged and her spleen is mildly enlarged, which is what they would expect from all of the transfusions she has had in the past.      At the beginning of the week, Amy continued to have more issues with her stomach and intestines but it seemed to get much better by the end of the week. In thinking that her high liver enzymes may have been caused by a light virus in the liver, they recommended repeating the Liver Panel Test again. Hopefully these numbers will go down. We will have these liver tests performed on Monday along with the other regular blood tests done to check the Marrow function. I feel pretty good about these Marrow tests, since I noticed Amy looked better yesterday than I have seen her look in a long time. She is with her friend Alina and her family to spend the night and she is really excited to get away from us “old” people. Alina’s mother called me a little while ago and said she noticed Amy’s rise in energy as well! So I think that is pretty good news! Well I know I have quite a lot to be grateful for this Thanksgiving! I just cannot say it enough! Keep up the good thoughts and prayers. And be thankful for your health and the health of you children! And please pray for those who are not as lucky as we are! Have a Grateful Thanksgiving! :) Becky November 10, 2005   Great news getting greater and the concerning news is still there but less worrisome! Amy's retic went up again! 2.7 to 3.8! Hemoglobin went up from 10.0 to 10.8! Amy's marrow is pumping along and making brand, spankin, new, red blood cells!!!! Yay for Amy! It looks like our transfusion days are behind us!!!!!   We had her labs performed yesterday and Amy had to see one of the doctors due to some pretty bad   cramping and pains in the abdomen. They had to run additional tests to rule out a few things. They were all ready to admit her last night but slowly the pains that had started a couple days earlier were subsiding. The Milk of Magnesia kicked in and nature finally took its course and did the job. I won't tell you Amy's description of  the outcome! It was very gassy in the house last night! Nicki was back and was in the same room with her. (hee hee) But she looks so much better now and I feel relieved! Dr. Young went over some of the results of the tests performed yesterday.  Besides the great results of the red cells I told you about, the 2 liver enzymes that were concerning because they went up quite a bit, came down a little. However, the Atypical Lymphocytes and the Band Neutrophils have steadily been on the rise which along with the low white count at 2.0, is more than likely a sign of a viral thing going on; more than likely in the liver. The good news is that Hepatitis A,B,and C all came back negative. He explained that if it were a small viral infection in the liver, it is still called Hepatitis, just not as bad as one of those. It is not uncommon for people who get many transfusions such as Amy, to be at risk for Hepatitis even if precautions have been taken. We are going for a consultation to see a GI on Monday to check these things out more thoroughly. They deal with the liver issues, the intestinal issues as well as the decline in her weight issues that are a bit concerning. So we will know more next week. As they have told us, these kind of  "Kinks" are common within the first 6 months to a year post-transplant and they just need to be dealt with as they happen. The other item we still have to look at is the iron level. It hasalways been up there due to all of the transfusions but this lab showed the level at over 6,760. We discussed this as well. He doesn't want to restart Chelation with desphoral or the new oral medication to remove the iron from the liver due to the fact she is so newly transplanted, we don't want to rock the boat. Now that she is making her own blood cells and not in need of transfusions that cause these levels to rise, the level won't continue to augment and her body will begin to get rid of some of the iron on its own. He wants to wait a year post-transplant to possibly begin using one of these approaches. He said it can take many years before this iron would start doing much damage. Alex and I both agree on that. (believe it or not) One thing we don't always agree on is the question of the broviac (the lines going into Amy's chest).  This line has been so helpful  during all of this. She didn't require any IVs and needles. All of her Transfusions and  IV meds and blood draws have gone through this line. It has alleviated a lot of trauma and stress. The downfall is that it can lead to a source of infection. We have not had any problems with this line and we keep it flushed with Heparin daily and clean the entry site with antibiotic wash and change her occlusive dressings and caps weekly. So it hasn't been a problem to date. But Alex has been chomping at the bit to get it taken out and Amy has been his biggest cheerleader....... because she wants to swim and we won't have to cover it up and  tape the area every night before she takes a bath. Since Nic and I are the ones who take care of the  Broviac, we still appreciate it being there even if it takes some work.  We feel it is so much more convenient to get her work ups and labs done and less stress than it would be if it were out at this point.. Dr. Young said if after her work up with the GI on Monday and everything looks okay and the blood levels remain up, he will be comfortable about taking it out. Amy says she understands she will have to get blood draws from the arm again,  the old -fashioned way. Well that is everything in a rather large nutshell! It is probably more than you need to hear but laying it all out in black in white, helps me to see the whole picture and how far we have come. And the most important thing is that Amy's Bone Marrow seems to be on the road to functioning well!  This is what we have been praying for and what the doctors have been striving for! Finally, I know I say it a lot but I can only repeat that I am so grateful and so relieved and so happy! I am just going to sit here and appreciate this moment. I hope you all do the same! Have a great night! I know I will! Becky   :) November 8, 2005 GRREEEAAAAT NEWS!  (and a little concerning news) We went to clinic to see our Hematologist yesterday. Besides the fact that Amy has had some bad abdominal cramping which is most likely a constipation issue, (probably her new diet) she was looking pretty good. We had her labs done and we have just gotten the results back.................... Amy's Retic is 2.7 percent an with an absolute Retic of 87!!!!!! The hemoglobin is 10.0 and that is 11 days post-transfusion!!  This is the jump we have been waiting for!!!!!!  Yippee!!! :) :) :) :). Did I forget?  :) I am waiting to hear back from Dr. Young to see if we can celebrate the jump in the Retic with a bottle of champagne. I am really excited!   He spoke with me earlier today because he is a bit concerned about the results of her liver enzymes; They jumped up also, which is the concerning point. We have to go tomorrow for some more blood work and we have to go see a GI doctor on Monday to consult them about this liver issue. Since her white count was a bit low and the fact that these liver enzymes took such a jump, we have to rule out certain liver infections and things like hepatitis. We are hoping it  is  just a viral thing. I am waiting to hear back from Dr. Young about what he thinks after seeing the Retic count. I will try to keep you updated! Oh by the way did I mention?      :) October 29, 2005 Good evening to everyone! We are back home after our adventure at the hospital! Yea! Amy had no more fevers and she looked real good last night. In fact after her 2 units, she looked very good. She drove her nurses nuts last night in OICU. She was giving them rides in the wheel chair and stayed up till after midnight! It was fun for her but after the 3 hours of sleep I got the night before and all of the worrying, I was not seeing the "fun" in her adventure. I had a great awakening for the change of nurse shift at 7:00am. Those nurses probably got their well deserved revenge.......grrrr. The important thing is that she had no more fever and the cultures were coming back negative, the chest was clear, and the fact that the hospital had quite a bit of flu bugs running around, we were ready to go home! So I got all of our things packed up (it is amazing how much stuff you gather in just a couple of days) and ready to go and we waited for Amy to finally wake up after her night of mischievousness. The doctors are pretty sure that the counts dropped because of a possible virus. As they said to me, the marrow can be very "tenuous" (new big word for me) the first 6months after transplant. They took a couple of more tests to check a few other things which will take a week or 2 to get the results back but I feel better knowing this is the probable cause. I am just a bit scared that with flu season just beginning EEEKS! And the moment Amy found out she was going home, she began harassing me to have someone come over to play.....today!    AAAAHHHHHH! And of course, she still wants to go to her class Halloween party on Monday! We argued all of the way home today about these things. She just doesn't understand how afraid I am of  her catching something again. She is very stubborn. Give me strength! On the way home Nicki informed me that she was warned by Julie that  after her endeavor of trying to make homemade candy last night , that some of the "appliances" may now have issues. This worried me a bit because the last time Julie tried a new "endeavor" in the kitchen, she melted all of the blue crayons she could find and tried to pour the hot melted, blue wax into a "plastic", globe "thingies" that you shine light trough to make it look like your ceiling has the beautiful galaxy floating above you. (you know what I mean?) Anyway...........did I mention the word "plastic" .......Anyway she poured it into the "plastic" mold and when it flowed right through and melted the mold,it flowed right down the island vent of the stove and all over the pots and pans underneath. The bright  "15" year old genius at the time, thought it best to just clean the top part of the stove and by just closing the cabinets below, it would just sort of disappear on its own, only for me to find it out a few days later. Oh yeah, I was talking about her genius act of today. I got to the kitchen and my stove top was missing the burners and the vent plate was not there and there was a bunch of hard coated "candy" looking stuff on the counter along with pots, pans measuring cups scattered all over the place. The dishwasher was running (I thought this was a good thing when I saw it) Well I told myself, it looks like she is making the first efforts of cleaning up the mess. I passed the table on the way out of the kitchen and I saw this little 8 X10 tray of about 10 "candies". Wow Impressive. I decide to take a long needed shower after being at the hospital for the past few days and then I would take a nap. I knew I shouldn't have done that. When I came back downstairs, the kitchen looked barely better than before. I had a headache and went to the kitchen sink  to get a glass of water to take with my motrin. I walked onto a soaking kitchen rug full of some weird unidentifiable, splattered mess. I opened the cabinet door and saw splattered water and "stuff" all over my bottles and cleaners and the back wall was coated also with this "stuff". I called Julie down in a very mild mannered scream. She insists she had nothing to do with the sink problem. After getting many towels laid out and pulling everything out and cleaning things off, and getting a better view of the problem, I noticed the pipe connecting the garbage disposal to the dishwasher was on the floor. Julie continued to use the water to rinse up the dishes she had made a mess with earlier. Little did she know that the water was flowing right through the pipe onto the floor. Well I am letting the area soak up with all of the towels I could find and I came in here to update you. I am hoping that when I go back into the kitchen it will have been a bad dream and/ or Julie or someone will have cleaned the mess up for me .....Yeah right....Well I think I am going walk right past the whole mess and find me a glass of            Pinot Grigio and act like nothing is there and drink a toast to Amy's homecoming! Or should I begin all of the bookwork that I was supposed to be doing for the last 2 days while I was in the hospital! NOT! The most important issue of the day is Amy. I am not going to cry over  "spilled milk" or in this case, "spilled, splattered candy, garbage disposal stuff".  I wish you all a good night and thanks again for your good thoughts and prayers! Ciao for now, Becky October 28, 2005 Well, I don't know what more to say than it looks like we have a hit a bit of a bump in the road! Nicki called me from  the office yesterday saying Amy was a little dizzy and had a headache. We weren't supposed to go to clinic till today but she was looking a bit pale already yesterday and was really tired. We thought at first it was because of her excitement and all of the movement of the celebrations of her "100" Days! But when we got to the emergency room yesterday and had her levels checked, we were surprised and a bit disappointed that her Hemoglobin had dropped to 5.2. In fact all her levels dropped including her white count and her platelets. (we are still waiting on her Retic). Needles to say, we had to put her in the hospital for transfusion. We got her in and had to wait for the cross and match and by about 10:00 last night when they were ready to start the transfusion, Amy started to get a fever. So they had to stop everything. They had to discard the unit and take care of getting the fever down. Well long story short, the first unit was finally started at 3:00am this morning. It finished at around 6:00am We still had a unit to go and guess what.......she spiked fever again.....103! So cultures were taken again and we have to wait for the results. They finally started the 2nd unit  at 10:00am. So it is almost done and now we are waiting to do a chest x-ray to rule out an infection. We are waiting for these results and to speak to the infectious disease doctors and the hematologists but we will at least be here for the next 24 to 48 hours. We are hoping it is a virus and hopefully Amy is  able to fight it off. So far it looks like she will. But we have to wait and see. October 21, 2005 Hello Everyone!  First of all, I know a lot of you have been waiting for updates......I am really sorry but we have been busy getting our lives back to somewhat normal. Barring a lot of boring details and ups and downs and a few "nail biting" moments in the healing process, we are very happy to announce, that for the first time in over 2 and 1/2 years, Amy's Hemoglobin level went up .........WITHOUT TRANSFUSION!!!!!!!!!!!! It only went from 8.1 to 8.6 but it didn't go down, it didn't stay the same but went up! This along with the fact that her white count went up from 2.7 to 3.4, the platelets went from 101 to 154 and the retic seems to be a bit more stable. As the doctors have said the red cells (including the retic) would be the last to stable out and will still take months to get to a more normal range. The fact that the donor was AB- and Amy is O+ makes the red cell process take a bit longer. Amy will change blood types, so I am sure as you can guess this make the process a bit more complicated. However, if she can stay with a hemoglobin in the range of 8, she doesn't have to be transfused! And this is great news!!!!! Her doctor was pleased with this news and we believe we have at least begun to turn the corner! We still have a way to go before we can cry victory but all in all Amy is following a very good post -transplant course!  But needless to say, we are very, very relieved and so happy! More than anything, we are so grateful! Grateful to God for answering our prayers and all of your prayers. Thanks to all of you for these prayers, good thoughts, Karma, e-mails, messages, cards, phone calls and concern for Amy and our family! We are truly blessed to have all of you behind us supporting us through the past years!   First I want to thank EDNA! She was our transplant coordinator! She deserves a prize for her brain and a vacation for all of her hard work and stress she goes through everyday helping and caring for desperate people like us! I know our case gave her several close nervous breakdowns! We are so grateful to the wonderful Medical care we have been so blessed to receive! Thanks to Vicky, Erica, Faye, Kathy, Linda, and Christine in the Hematology Department for your patience with my annoying phone calls and all of your assistance. Thank you Dr. Young, who we saw for the first time 2 years ago, on Halloween! He was in his "soccer costume" He was very patient and conscientious in his care for Amy. And because of him, we came to a very difficult decision to go forward with transplant. And made a pivotal decision to go with the "10/10" match after already being scheduled with my sister, Debbie, related but "8/10" (still very grateful Deb!). As I wrote to him the other day, even if things wouldn't be going as well as they have been, we would still be as grateful because we know, as Alex is a surgeon, you can do your absolute best and sometimes things don't go as you would wish them to and the results are not always like ours. I hope this gives inspiration to him and other Doctors' who find themselves in difficult situations, that they gain strength from grateful families like us, during their more stressful and dark moments in helping very sick children. We also thank the whole Pediatric Hematology team, Dr. Nugent,   Dr. Gheeta, Dr. Rueben, Dr. Lovejoy,    Dr. Soni, Dr. Bhouey, Dr. Simon and Dr. Singh, as well as the team of Doctors in OICU, Dr. Arrieta,             Dr. Lang, and Dr. Neudorf. We are grateful for all of your knowledge, expertise and compassion for Amy and all of your patients. You all practice in the highest of standards and we do appreciate all of you! We want to thank all of the staff at CHOC including Pharmacy, Childlife, especially Kristi and Meagan,   Wayne and the Occupational and Physical Therapy Departments,  Housekeeping, Rema in Nutrition and Dietary and even the "psych" team. Thank you Heather and Jody!  I am sure you won't forget Amy's lovely demeanor! We especially want to thank the nurses and their assistants in OICU and 3rd floor!  We would have been lost without you through those 2 months. You people are truly blessed! You are so wonderful and giving with each and every patient and so comforting to us parents! Thank you to Eileen, Allie, Guy, Janet, Joann, Lori, Brenda, Amy, Angela, Julie, Mercedes,  Karen, Stacey, Chrisitne, Deanne, Suzanne, Christina, JD, Felix, Jessica, Rene, Nicole, Ladka, Jose, Johnny, Sheryl,  Ivan, Donna  and so many others. If I didn't remember to thank you, it is because I am having a brain break down, not because I don't appreciate you! I truly appreciate all of you! Not just individually, but when it is necessary, you are there for each other as a group and always there for the same goal; to provide the best care and love to each and every child you treat. I hope each of  you know that what you do is not just a job but a calling to a vocation you are truly gifted for. So if any of you have doubts as to why you chose this profession as your career, don't question your decisions, for what you have given of yourselves to children like Amy and the support you give to scared and desperate families like ours cannot be measured.          You are simply the best! There are not enough adjectives in the world to describe how grateful we are for all you have done to help us when we needed it the most! I don't want to sound like I am at an awards ceremony but I feel we have won the biggest prize of all, the life of my child! So I will continue being grateful........ I want to thank the people at our offices. You have been so patient and helpful! Thanks for keeping Alex company when I know I couldn't be there for him. Thanks for all of your support! I want to thank my family for all of their support! First of all to my sister Christine for organizing the marrow drive and all of the sisters, cousins, friends and the people of Washington who participated in the drive!       I hope if you weren't a match for Amy, I hope someday you will be able to give the gift of life to another person in need! I am so proud to be a part of  this family. Debbie thanks for being ready to give of yourself to Amy! You gave us our first glimmer of hope! I want to thank all of you who came out to help with Amy...... Christine, Nancy, Marge, and the 2 terrific cheerleaders Diann and Bobbi (Hopefully, video coming soon)    It wasn't easy but it was sooo helpful! And the ones that couldn't come or just because I thought it better for Amy and for us that you didn't, I am truly grateful for how much understanding,care and for your support! You all mean so much to me! By the way Gloria, Amy loved the candy! And Mom, I thank you for your prayers and the strength I must have gotten from you to make it through this ordeal! To Brenda, Laura, Don and all of the Meyers, I am so sorry about the  loss of Justin. I was relieved to know that you have been so giving when you decided to donate and give life to people like us who are in great need of a second chance and so grateful for your act of ultimate kindness and giving. Although,I wouldn't wish what you are going through on any human being, I hope it is helpful to know that you have made people like us so deeply grateful. I hope it gives you some consolation. I Thank You on behalf of some very grateful recipients,  who you have not even met! I can assure you, that you cannot measure the joy and hope you have given them. I want to thank Mia  and Julie for taking the back seat while we have been going through all of this! I want to thank Nicki for all she has done through this and all of the sacrifices you have made for Amy. I know you wouldn't and couldn't have done differently but I truly appreciate you! You have shown so much support and love for Amy and you are probably one of the few people who know how this experience can change a person so dramatically! You have been awesome through all of this! Thanks to Amy's friends for their care and support! Thanks for all of the cards and letters and messages. Thanks to Alina and  Michaela and their  families who visited Amy! Thank you Coral for your persistence to get messages to Amy (who isn't the greatest at returning them) Thanks to all of you who left messages on her web site. Especially to Taylor, Madison and Daniel. It is so good to hear from kids who care! All of your messages kept me going! Thank you to Amy's teachers, Mrs. Coover, who was there at the beginning, Mrs. Salama who went through a difficult decision making year and who also visited Amy this summer and to Mrs. Ward who is Amy's teacher this year and is tutoring her till she begins school in January! Thank you to Mrs. Flores and all of the teachers and staff at St. Edwards for all of your prayers and concern and to Mrs.Lister who has helped us accommodate Amy's schooling situation and has lead the school in praying for Amy's health. I want to especially thank Heather Monica. She is the mother of Kylie Jae. She has helped me so much in her frankness and her courage! I was so relieved to find someone out there who I could share information with and who really understood what I was going through and the agony and courage it takes when you will do anything to save your child! You were a comfort to me! I will never forget your voice, with your "light" New Jersey (hee hee) accent so strong and even if things didn't seem good, you would not give up! You have been through so much more than I have ever gone through! You have a great sense of humor through all of the difficult times and painful moments you have had to endure! I will always keep you,     Kylie Jae and all of your family in our prayers! You are truly blessed! I also want to thank Monique Delorme. She is Alex's cousin in Marseille. She had leukemia and had a bone marrow transplant 6 years ago. She had a special connection to Amy because of the similar conditions and treatments like chemotherapy and bone marrow transplant they both underwent. She was always so caring and interested in Amy's case and would pray to Saint Rita (Patron Saint of Blood) and even went to celebrate the feast of St. Rita and made special prayers for Amy. Even though she was so far away, and they were different in so many ways, she truly empathised with Amy and was so kind and thoughtful and always interested in Amy's condition. The day I got the good lab results, Monique passed away! I send my condolences to Michel her husband and her 2 sons, Thierry and Olivier. Even though we were not particularly close, the connection she had with Amy (or as they say in French "EMY", She will be truly missed by many! And of course, the donor! We don't yet know who you are but as I wrote you anonymously during the time of the transplant while Amy was undergoing Chemo; your selfless gesture has been a Godsend! I hope to meet you in person some day to thank you for what you have done to save my child and to change our lives! As always, I have been long winded! But I must say it feels so good to show some gratitude for all of my blessings! This blessing is a child who is going to free of an awful illness and who will return to being a normal healthy child. For those who already have normal, healthy children, knowing what we have gone through to get there, take a moment and thank God for your healthy child! It can be so easy to take for granted! By the way, in 2 days, it is Amy's "100 Day" post-transplant! We are celebrating that this weekend by having 2 friends spend the night and 4 can come over for play date tomorrow! Amy will be discontinuing yet another medication as of Monday! We couldn't be any more thrilled! Way to go Amy! Thanks Again! Becky Carli  :) September 4, 2005 Hello everyone! This is your long-winded very tired, very but relieved Mother to let you know about the latest on Amy. Last I spoke with you was last Sunday! Since then we have been trying to get settled in. It sort of felt like bringing home a new baby. But it wasn't uneventful. We had to go back for tests on Tuesday so we headed back to CHOC! The doctors saw Amy and everything seemed fine. We drove back through the great traffic on the 91, so it took a few hours to get back. We got back and made dinner and after dinner I met with Mia to get a portable printer and telephone for her dorm. While I was at Best Buy, I got a call from Nic. The hematologist had called her and let us know that Amy's hemoglobin had dropped to 5.4 and we had to go back to the hospital the next t morning. So On Tuesday we packed up a small bag and Amy and got ready to return to our favorite place in the world. But before we did that we had to meet Mia at the mechanic. She had just noticed (yeah right) that her brakes were not working right and they made a loud screeching sound. It took a while to get the paperwork done and  then we were on our way to fight the traffic again into Orange County. Mia dropped me and Amy at the Hospital and there we spent the day. Amy got transfused with a large unit, 450cc, which I was happy to have because that way we didn't have to get 2 separate units which takes longer. And we were happy to spend the least time as possible at a place we had just left from couple days earlier. Since we had no car, Nicki waited for Alex to get out of surgery and then came to pick us up in his car beings Mia had taken mine to LA. So we finally got home after a great ride again through the west bound traffic at rush hour but were still grateful to be going home! We had a nice dinner. There I began to work on the books for the offices since the end of month was fast approaching. I was a bit behind, on payables and I had to get them caught up so I wouldn't have bill collectors come after me. I finally got them caught up and then worked on Receivable entries. Since the car issue was getting a bit stressful I thought it would be a good idea for Nicki to retrieve her car in Denver. So she made arrangements and Julie, who doesn't start school till Monday, accompanied her so the drive back wouldn't be so lonely. So they were on there way Thursday and made it to Denver where she got her car back and took care of a few other things there. They started their adventure back. They took more of their travel time to pass through Colorado, since it is more interesting then the long drive through the desert in Utah. I have been hearing from them from their adventure the last couple of days. Julie was happy to see a moose and they also saw longhorn sheep! Anyway back here I spent the weekend catching up on laundry and watching over Amy making sure she was taking her meds and doing her heparin flushes and dressing changes. She is doing pretty well with all of these things and she can practically do her flushes by herself and she is very proud of herself. On October 23, (her 100th post -transplant date she can invite a friend or 2 to come over (we have to be really careful with her immune system but she is already preparing for that date. I think she is tired of our adult attention. I spoke with the principal of her school and we are going to be getting Amy's 5th grade teacher to come twice a week to the house and tutor Amy in the Math and Language Arts curriculum for this year and the school will be sending home a packet of  school work for her to do here. This is all in hopes of Amy not being to far behind when she goes back in January, which will be her 180 days. We hope all goes as planned. So far she is doing really well for her condition! So keep up those prayers and good thoughts support.  Last night she got really nauseated again. They said it is going to happen for a while yet due to the Chemo she received. But we were well prepared with meds to take care of that. Right now she decided to make a German Chocolate cake. She informed me that she couldn't continue because the eggs were frozen. I don't know how to explain that one! She charmed her dad into going to the store and buy her a dozen.   We go back to CHOC on Wednesday for more tests and hopefully we will continue to get good news! I will try to keep you informed as soon as I can. I sort of promise! hee hee On another note, during the last week, we have been watching the horror in New Orleans and the Gulf Coast! We hope you join us in sending prayers to these devastated people and prayers of gratitude for the many factions of help they are getting from the generosity of the American people! Again we all thank you for your support! I have to go make dinner and see what damage Amy has done in the kitchen before her eggs get here! Bye for now! Becky :) August 28, 20oncologyave great news for all of you! Amy is HOME!!!!!! Yes! It is true! I have not been online for the last couple of days because a lot of things have progressed quickly and we had to get some final preparations ready for her discharge! I can't tell you how happy and excited we are! We are also a bit scared and very exhausted from the battle we have gone through! I do apologize for not letting any one  know but it came upon us quickly and there has been a lot to do in the past couple of days. I haven't had a chance to sit down and even check e-mails. Friday I cleaned out the garages one more time. I swept all the floors and ceilings of any cobwebs and I used my handy-dandy shop vac blower to blow out any dust. It was a very hot! The temperature here in Corona has been up to around 109! So I rewashed Amy's bedding after bringing up her new mattress and hanging new curtain rods and curtains. Julie re-vacuumed all of the carpets and help me haul trash. Friday Mia had to finish packing and clearing out her room to move to her dorm. So I helped her! I also went to get her car washed inside and out! I felt so bad that I didn't get to spend more time with her before she left for college! But she did get off on her merry way! Way to go Mia! I went to bed around Midnight thinking I had plenty of time to finish in the morning since my car was at the hospital with Nicki and Alex had to work! Luckily I decided to get up early anyway and finish because I got a call from Nicki mid morning, telling me Dr. Young just came in the room and said Amy was ready to go home! So I called Alex and finished up some last minute details and showered and got ready for the exodus! We took his Durango and headed down to the hospital with Julie and began getting the 2 cars loaded! It took a couple of hours! (that was after Nic had packed up a lot of stuff already) Then while we waited on the nurse to get the discharge papers ready and the Doctor to write up all of the prescriptions and prepare the supplies needed to do Amy's Heparin flushes and dressing changes and cap changes at home. We had to watch videos and get instruction from the nurses on how to do this before we would be able to be discharged! Luckily we passed! So finally after 2 months in the same room (#302 OICU), 30 days of isolation and many exhausting and nerve-racking days and nights, We were free! Amy hadn't been outside of the hospital the whole time! It was absolutely the best moment of my life! I am so happy for her! Least to say, she is DBA FREE! We still have a few hurdles to jump but I think the worst is over! We want to thank all of you for your prayers, good thoughts, words of encouragement, help and support through all of this! It helped us all so much! We are truly grateful! So now a new chapter begins..............after we got back home, Amy wanted to be the first to walk in the door! She saw here kitties and wandered around the house in a state of numbness! She had a full house to roam in, stark contrast to the 10X10 room! So we got her settled in and for us it was back to more work and organization! We emptied out the 2 cars and I decided to put it all away and get it over with! It took a couple of hours and I was able to begin laundering and all of that good stuff! Alex went to pick up Amy's medications at the pharmacy while Nicki went to get supplies at the grocery store! We are going to be on a pretty strict Post Bone Marrow Transplant Diet for quite a while! We finally got settled down at around          9:00pm. Then we had to get Amy's evening meds prepared and taken! There were 8 to take and Amy wasn't feeling to great! She had gotten nauseated and vomited earlier (we think from all of the excitement and movement) The meds were not easy to take and we had a bit of a battle to get her to take them!          The meanie I am had to put her on a timer and if she didn't take them within 20 minutes would have her TV taken away for her first night home........well 2 hours later, she finally took them. She had no TV and was sent to bed! She was up early this morning and woke me up to inform me that she pooped! Which is a big deal in this whole intestinal process! I went downstairs and she ate a bit and we had to start the whole medication thing over again! I put her on a timer and within 10 minutes, she got the meds down which enabled her to watch TV this morning! I then fixed the pool lights and straightened up outside (it felt nice to breathe real air) I fixed my tomato vines and then came in to do more laundry and fix the TV in the living room for Alex. He did have the nerve to ask me if I would heat up some polish sausage for him!!!!???? I asked him if he would like to wear the sausage.........anyway things were slowly starting to get back to normal! I sat down and made a listing of the medication schedule for morning, afternoon, and evening meds to be better prepared. Some have different syringes, some have to be crushed, one is only taken on Friday, Saturday and Sunday (go figure?) And other's have to be drawn up with liquid or elixir to taste better! It looked like a pretty daunting task but I am sure it will get easier with time. She took her afternoon meds and then we all decided to take a nice, Sunday afternoon nap; something we have not done for 2 months, in our own home, in our own beds, with no nurses, doctors, cleaning people, menu people, dietitians, childlife helpers, "psycho" people, name tag verification people......... etc, etc,etc,...............just us! It was great! Then Amy got me up an hour later to inform me she pooped again and she was hungry! I made her dinner and we all sat at the table together! Then I prepared Amy for her bath by covering up and taping down her broviac. While she bathed I got another load of laundry moved over while Nicki was doing the dishes. Then Nicki got her out of the bath and she did the heparin flushes and the broviac cleaning and dressing change on Amy! While she was doing that I prepared Amy's evening meds! She actually took them all in less than 10 minutes! She played with her Kittens for a bit and is resting now! Which is what I plan to do, also! It is almost          11:30pm and tomorrow we have to take Amy back to the hospital to get her levels checked! So I hope you understand why I was not able to update you all before, but I want to thank all of you again for your support! We are truly grateful and by the way, keep praying........we are not totally out of the woods yet! You all have a great night; I know I will! I hope to write soon! (hope....hee hee) Love, Becky :) August 24, 2005 I apologize again for the lack of updates. A lot has been going on here. I will give you and idea of what has been happening. Friday and Saturday, Amy continued having digestive issues that were not getting better no matter what was tried. She had no appetite, she was nauseated. She was barely drinking and eating pretty much nothing. The little she did eat would come back up a couple of hours later.  She had dry heaves to follow. The poor kid was miserable. The doctors were monitoring her and trying different medications to  help her out. These kinds of symptoms are still pretty normal for this process after all of the Chemo and drugs. However, through all of this, Amy has been doing great at taking her oral meds. She knows it will help her get discharged faster. On Sunday at about 1:00am she vomited all over the floor without warning. Housekeeping was called and I had to change all of her bedding and give her a quick bath. So the night was short, which was a shame, because the big Choc-Ride was the next morning. Hundreds of Harleys rode in for the Ride, so it was really neat. The whole parking lot was full of bikes. We could see them from Amy's room. Amy was sound asleep from her tough night. Which was too bad. a couple of celebrity riders came up to the unit with the Harley mascot, "Bandit". "Bandit, Mickey Jones (actor from "Home Improvements" and other films, Michael Gregory, actor from "Total Recall" and other films all came into Amy's room. They got behind her bed and had their picture taken with Amy. But we couldn't wake Amy up!  It was a shame but they did sign autographed pictures for her! Thank you to all of those great, kind people for donating their time to kids like Amy! They are so generous! More importantly, Amy's friend Alina came back to spend some time with Amy. It really helped her feel more like leaving the room. Something she hadn't had much of a desire to do for the last few days. She spent the afternoon with Amy! However, Amy continued to eat less and less and we started getting a bit worried even though the doctors assured us that it was still pretty normal. They were going to get a Gastrointerologist (GI) consult to see what they thought. Fast forward to Monday afternoon, the GI Doctor came in and he said it could be one of two things; Gastritis which seemed the most simple explanation but not totally explainable because Amy was not having any pain with all of this. He explained that he thought it was more likely to be a possible immobility of the intestines, which could explain the reason why there was no pain, and Amy would take a couple of hours to vomit the little she did eat; basically the food was just sitting there and the intestines wouldn't move it so it got stagnant, causing nausea. So he put her on Reglan which would help stimulate the bowel and could also increase her appetite.  He changed a couple of her anti-nausea and ant-acid medications. He wanted her to try that for a few days and we should see some change. If not, we could do an EGD (a scope that is put down the mouth to the stomach to see what is happening). So she had her first dose of the Reglan Monday evening and has been taking it since. So far Amy's appetite seems to have increased a bit. She ate imitation crab meat and some sun chips, pretzels and a bit of yogurt drink and a little lemon-lime soda. At around 11:00pm she did have a small bowel movement, which I think is a good news but the doctors haven't come in yet this morning. She didn't vomit either, so I am cautiously optimistic that this is helping. On the blood front, her counts have dropped a bit which we were forewarned by her hematology doctors, since they started her on a drug called Bactrim. This drug is used at this point post- transplant. It is an antibiotic used for certain lung infections commonly seen at this point. However, it is known to drop the counts. Amy has an ANC of 833  today.  Her white count was at 1.7 and her neutrophils went down a bit. Her hemoglobin is down to 6.4 today but we are waiting for her Retic count which will tell us if she is trying to make new red cells to compensate. After we get this count, they will decide to transfuse or not. So we are waiting for that manual count! So, that is it in a rather large nutshell. I will try to get you an update as soon as I can! Keep Praying for Amy............It really helps!   Thanks, Becky :) August 18, 2005 Good Morning everyone! I am sorry it has been a while but there have been a few things going on that have kept us from having the time to write. Since I last wrote, Amy had a couple of problems with her liver counts. Her bilirubins went up more than usual,  so the doctors' were contemplating doing a liver biopsy, which they didn't want to do until last resort due to Amy's platelet count and the fact that she is on a steady recuperation form the transplant. She was all excited last week when they told her she might be able to go home by this Wednesday (yesterday) And very upset when the chief of the Hematology department broke the news that she wouldn't go home any time soon till her levels were more stable and she was eating and drinking better and taking her oral meds better. She has slowly been able to do that but she has a few bouts with nausea and vomiting.  And the oral meds are still a bit of a battle. But we are working on al of these things. The doctors have changed some of her meds and the dosages and discontinued the TMP which could have been the cause of these numbers going up in the liver as well as the breakdown of the transfused blood (hemolysis)  causing the bilirubins to go up also. It could have been one or a combination of these things, but this morning we are happy to report that these levels have been coming down again. Yeah!   As far as everything else, Nic got back from San Francisco with Mia on Sunday. They went there to see Dave Matthews in concert. They know how much I love The Dave Matthews Band! They said it was great. Anyway....they got back Sunday afternoon and Nic replaced me so I could get home and organize and prepare the house for Amy's homecoming. We had the drapes and all the rugs sent out to be cleaned. On Monday we had a thorough cleaning of the house. Tuesday they came to clean the air ducts, steam cleaned all of the tile in the bathrooms and the kitchen and had all of the carpets and upholstery cleaned. All of the furniture was lifted and everything was taken from under the beds and on the floors and put up for them to clean. (I am hoping that my kids are putting some of this back as I write this ) I contacted a company that is coming next week to wash and groom the cats. They are also using a new type of brush called the "furminator" It reduces shedding by quite a bit. I stocked up on purell and other antibacterial soaps, tissues etc..... and then I worked my payables for the offices and entered deposits........then I went to bed and got up yesterday and Alex dropped me off here to replace Nic. I then ran to the store and got some things to make a Bone Marrow Transplant version of waldorf salad for Amy. She got to come in the little Kitchen and whip the whipping cream with me and help make the salad. She seemed to enjoy that. As far as the meds go.......since we have a struggle with that every time, they sent in Amy's "psycho" as Amy calls her to speak with me. Amy saw her from across the nurses' station and stayed away.  So I got to spend the time talking to "Jody" (Amy's favorite person) But we now think we have come up with the perfect solution. Amy has said she will take her meds within 20 minutes of getting them as long as we kept "Jody" away! It worked like a charm yesterday afternoon and last night. Let's hope the threat of "Jody" keeps her in line.   Anyway, I know I babble on and on, but I have saved the best for last........actually Amy's lab results just came in and her liver levels have gone down again and so has her Uric acid.  The white count went up a little bit to 1.6 (yesterday it was 1.4) so that is a bit comforting since it had been steadily going down for the past few days. Her Hemoglobin has been low but since we are used to Amy being low from her disease, the doctors' want to wait to transfuse until they absolutely must. She was at 6.6 yesterday and stayed there again today. If at all possible they want to wait to transfuse to keep the hemolysis under control, so we get a clearer idea of the bilirubins.  I know for some of you this sounds like Greek but it helps me to organize it all in my tiny brain. But one of the best news is that Amy now has a Retic Count of .5. For those of you who don't know what that is, it is the new immature red counts.........on the 12th they were at .4. This means Amy is making new red cells....something we have not seen for over 2 years probably!  Yippee! Hey Amy has just taken her oral morning meds just now (before the afternoon) even after a bout with Nausea this morning and she did her mouth wash too. I hope the rest of the day goes as well (knock on wood)! One of the Doctors' is here to see Amy now, so i have to go for now! I am sure you have heard enough from me!  :) By the way I have pictures to post but I haven't learn how to yet! That will be my next venture! August 11, 2005 10:14 PM PT Day +26 Hello Everyone! This is your co-host (co-administrator) Becky, or for those of you who don't know, I am Amy's mom! I am not as good at this web page stuff as Nic but she is pre-disposed with her sister Mia for the next couple of days and I am going to try this on my own (with a bit of direction from Nic). First of all I would like to thank Nic for the great job at keeping you all up to date with Amy's case.  And for the sacrifices she has made to be with Amy at this time. I am really excited to let you all know that Amy has had an ANC above 500 for 3 days in a row! For those of you who do not know what this means; it means she can get out of her isolation room after being in isolation for more than 28 days!  Yeah! Her numbers are steadily climbing at a good rate. The "ANC" is a combined number of her white count and neutrophils. Meaning she can fight off infection to some degree.  We also got another test result we have been waiting for ....the RFLP (I think that is the right name) This blood test shows Amy's marrow production is coming from the donor at 100%, meaning that full engraftment has taken place. The doctors' were really happy with that.   This also means that now we have to keep on the watch for GVHD (Graft Versus Host Disease)  So far, they have seen what seems to be extremely mild signs of this on the palms of her hands. The nurses' say the doctors' are being extremely cautious and miticulous with these signs. Thus far we haven't seen any of the bigger signs of GVHD. The doctors' note a little climb in her liver levels that they are keeping a close eye on to make sure she isn't showing signs of this complication in the liver.   Speaking of the liver, it looks like we have passed the point of major concern for the complication of VOD (Veno Occlusive Disease, a complication seen after Bone Marrow Transplant that can be very serious; esppecially in Amy's case since her iron levels were highly elevated pre-transplant from all of the transfusions. It looks like we are pretty much out of the woods on that one. So everyone keep up the positive thoughts and prayers for Amy; they help her & us soo much! Thanks also, for all of you sending messages and cards and the phone calls. I apologize for not getting back to all of you, but I have made Amy the first priority and put all of my energy into here care and if not that I am also trying to keep up with my office duties and trying my best to keep up with Amy's laundry, and when I am there to take care of all of the pets (birds, fish and cats) and all of the other chores to keep the house maintained as best as possible.  Julie will be back this Satruday and she can take over with the pets. I worked on Mia's financial paperwork for LMU and paid her first 2 months tuition right at the deadline........whew.....I was worried for a bit. Any way, back to Amy; they took her off her last IV antibiotic today and they cut down her IV nutrion by 1/2. She is still on a couple of meds  per IV but they will see how she is doing Monday. Possibly she will take more orally and get ready for discharge by the end of next week. Keep your fingers crossed. She will have to take certain meds for at least 100 days post transplant and will still be on the watch for GVHD for a minimum of several months. We still have a way to go but the doctors really are happy with her progress so far. She did have to be transfused today since her red cells (HGB) dropped to 6.5., This is very normal because the marrow makes white cells first (like she is doing right now) than at around 30 days post-transplant the red cells usuually start producing and lastly the platelets sometime after 30 days.  I am not sure how much of you know about this process, but I thought it would be helpful to better understand. I hope I am not boring you.  I hope this updated has helped and not made you more confused. I am known to ramble a bit. I think the isolation is starting to get to me. Is it possible for me to be an more weird?   I will try to keep you informed until Nicki takes over again! For now I am going to get Amy to take one of her last meds for the night and I hope to get some sleep tonight! Thanks for checking on us! I hope you are all well! Auguust 5, 2005 12:20 AM PT Day +20 Hey everyone... Sorry for the delay between updates.  As usual, things have been hectic.   Amy's counts are still rising slowly but surely.  She is still in isolation, but we're hoping that in a week or so she'll be able to get out of the room.  I think it's been about 3 weeks that she's been stuck in the room, so it will be nice to get out.    She's doing good, starting to eat a bit again, and getting more and more back to normal. Her ANC is up to 200, and her WBC count is at 0.8!  Yay! I hope that you are all well. nic July 31, 2005 7:00 PM PT Day +15 Right now we're watching Harry Potter and Amy's had a pretty good day.  So far, not too much nausea today, which is, of course, a good thing.  Amy's counts are pretty much the same as they were yesterday, which is good.  All progress forward / not moving backward is a good thing.  Her ANC is 117 again, and her WBC is at 0.3.  Other than that, there is not really much to report.  It's been an uneventful day.  Last night, they did wax the floors until about 3:30 am which was quite annoying.  But once we got to sleep we slept pretty well.  My mom is here tonight, and I'll be over at the Ronald Mc Donald House (which is my new favorite place in the world.).  My sister Mia has flown out to Missouri to go to the funeral for our cousin.  His funeral will be on Tuesday. Here is a link to info about Graft versus Host Disease, so you can be familiar with what we are watching for.  I wish you all well. nic July 30, 2005 11:30 PM PT Day +14 I apologize for how brief my first update was but Amy got cranky and some people had to get out of the room.   Anyway,  I just wanted to give a little more information on Amy's progress.  So, her white count is up to 0.3, which, of course is another improvement.  The doctors are really pleased with her progress.  They don't want her to engraft too quickly, and this is just the pace they want.  Amy's ANC is now at 117 which brings her closer each day to getting out of isolation.  In order for her to be out of isolation, she will need to have a count of 500 for at least three days in a row.   So, we've still got a ways to go, and it's not until day +100 that we can really start to breathe easier, but it is definitely good progress.  Amy's been more active, although she still hasn't been able to eat a whole lot.   Now, we're just keeping an eye out for Graft vs. Host Disease.  If it will arise, it could present at any day now, and it can range from mild to very serious.  So, hopefully, we won't see any of it!   That's all for now.  Again, please pray for our cousin and his family.   nic July 30, 2005 1:50 PM PT Day +14 Hello everyone.  Well, sadly, yesterday evening my cousin passed away as a result of the injuries he sustained in the car accident.  Please pray for his family as they go through this difficult time. Amy is in great shape her counts are up but I'm being kicked out of the room. nic July 29, 2005 2:15 PM PT Day +13 Hi.  Sorry for the lack of updates lately.  Things here have been a little busy.  I wound up in the St. Joseph's ER yesterday with a pretty bad infection in my kidney.  I was pretty incapacitated for a couple of days.  Amy's days have been a little up and down, but it looks like we're starting to see signs of engraftment.  Her WBC count is up to 0.2, after being at .1 for three days.   Sadly, our family has had some bad news this morning.  Amy & my cousin, Justin Brune, 19, was involved in a major car crash early this morning, on his way to work, in our hometown of Washington, Missouri.  He is not expected to survive.  Please pray for him and his immediate family.  Another man in the accident was killed. Thanks for your thoughts and prayers.  I will try to post updates as we have more news.  Again, please pray for Justin and his family. nic July 26, 2005 8:45 PM PT Day +10 Hi everyone.  Just checkin' in from the hospital again. I apologize, again for lack of updates but we had a couple more rough days.  This is the worst part of the transplant phase as Amy's still really nauseated and they are thinking it is mostly from the blood from the sores in her throat.  They were caused by the chemotherapy.  Because she is still so low (which is normal) on her platelets and white blood cells, it takes a while for those to heal.  Once she begins to engraft and produce cells, she should start healing and that will, in turn, make the nausea and sores better.  All this has Amy in a kind of in a dumpy mood & she's ready to get out of the hospital.  But, for now she's still stuck in the room and we're just dealing with that.    She's still having fevers, some pretty high (up to 103 F - 39.5 C) so we've had to deal with those.  Luckily, Amy reacts well to the Tylenol, which is great.  So, that's about it for now.... If you have a moment, please take the time to drop Amy a little note in the mail.  It really lifts her spirits up when she gets a note or a card! nic July 23, 2005 9:35 AM PT Day +7 Hello again.  I hope that you are all doing well.  I apologize for the lack of updates, but it's been a little busy over here.  Amy has had a rough couple of days.  She has had a fever off and on again, and it's been cruddy.  She's also still pretty nauseated and all that good stuff.  She is on IV nutrition, now though, for the last 2 days or so, because she could not really keep anything down.   Amy was on a pain medication called Dialaudid, but it seems she was having some adverse reactions to it.  It caused her a lot of itching and she was very emotional.  We weaned her off of that and she seems to be doing better now.  Her moods were really unstable for a while and she kept crying at the smallest things, which, for Amy is very unusual.    Today has been a much better day on the emotional front.  She is running a fever again, though, so that stinks.  She was laughing and cracking jokes this morning.  Her mouth and throat sores seem to be getting a little better.  Her new mouth rinse seems to really be helping.  They think that her throat sores could be an infection so she's on a couple antibiotics as well as an antiviral.   I suppose that is all for now, while she's napping I'm gonna try to sleep.  My mom and I have stayed here the last 2 nights, so we're a little tired, but Amy wanted us both here.  I got to snuggle with Amy in her bed last night.  :)   Love to you all!!!! nic July 20, 2005 6:33 PM PT Day +4 Hi everyone... Well, we're up to day +4, and so far all is pretty good.  Amy's still pretty wiped out with her low counts.  She needed a platelet infusion this morning and she had a bit of a reaction to it.  She turned a little blotchy and red and she got a bit of a fever.   Her blood cultures from yesterday came out negative, so that is a good thing.  She's sleeping right now, because she got a little bit sleepy from the pain medication that she just had.  She has been having a sore throat, and we think it is mucositis in her throat.  It sounds bad, but it's pretty much just some sores in her throat.  She's got lots of pain meds & popsicles to help out though.   We had a visit this morning from a couple of the Anaheim (yeah I know that's not the official name anymore) Angels.   Daren Erstad and Dallas McPherson came to visit!  They stopped by, had a chat with Amy and gave her a baseball hat that thyy autographed.  Amy was pretty funny, she wasn't very star-struck.  She did mention she used to live next door to Troy Glaus.  :) They seemed to think that was pretty cool.  Luckily, they left when they did, cause Amy got sick about 5 minutes later.  We have pictures of the visit, but the camera is currently MIA.  Once we find it back, we'll add the pics.  Amy's lost a little more hair, but you still can't tell.  It just falls out sort of whispy like, when you touch her hair.   I hope that you are all well. Nic July 19, 2005 10:29 PM PT Day +3 Hello all.  I hope you are well.  Amy is having a cruddy day.  She has been running a fever all day so she's been feeling pretty yucky.  She's on two antibiotics and they're doing a blood culture now to make sure she doesn't have an infection. She had been eating better but she threw up this afternoon and that didn't help.  Hopefully, it was just a freak thing.   She got sick after she had two meds so that could have been it.  We have noticed that while brushing her hair after her bath this evening it seems like she may be starting to lose it.  We were told everything would probably hit at once and it looks like that is what is happening.  Please keep Amy in your prayers!  Also don't forget about all the other kids up here on OICU! By the way, Amy received a really cute Build-a-Bear, and we're not sure who it's from because there was no tag.  If you sent it, we would like to thank you very much!!!!  That was very thoughtful and he's now sleeping on the chair next to Amy's bed! Thanks and God bless!!!! nic July 17, 2005 5:20 PM PT Day +1 Good afternoon everyone!  I hope that you are all doing well.  Amy is good, although she has no appetite for now.  It is the chemo that has finally caught up to her.  She's also pretty grouchy, but that has to do with the chemo too.   Julie came to see Amy, but unfortunately she has a little cold so she couldn't actually come visit.  She was able to stand outside Amy's room for a few minutes and wave hi, though. Amy's being transfused today, and she's doing really well as far as that goes.  So now, it's kind of the time for us to sit and wait for engraftment.  Hopefully, no GVHD will show up, but that's what we're waiting for.  This next coming week is supposed to be pretty tough as the chemo will hit her a little harder and she'll probably lose her hair.  Again, this is when signs of GVHD are usually seen.  Hopefully, we won't see any, but we're prepared for it if we do. Please keep Amy in your prayers! nic July 16, 2005 6:00 PM PT Hi again!  It's a couple of hours since transplant now and Amy seems to be stable.  Her stats were a little off for a while.  Her heart rate was really low and she had us a little worried.  She also had a rash from the chemicals used to clean the marrow, and she vomitted a couple of times.  But, she's doing much better now.   There are some pictures and I'm also trying to get a little movie clip uploaded.   Nic July 16, 2005 4:00 PM PT Hello again from Transplantland!  Well, Amy was just infused with her new bone marrow! She's doing really well so far.  She's just had a minor skin rash right after the actual infusion, but other than that, it's not too bad.  The marrow was given to her over about a 2 hour period.  She's a little trooper. We all sat here and watched with bated breath during the process.  It was a little nerve-racking because everyone sits and watches for the entire infusion.  But, all the marrow is now in.   It was pretty cool to be able to watch.   We're all doing well.  Amy's pretty medicated, but she's doing well.  Thank you for all your prayers and keep them coming!  I will upload some pictures later. Nic July 13, 2005 1:03 PM PT Hi all!  I apologize sincerely, for the lack of updates, but things have been a bit crazy here.  I have been sick for the last few days and have been banned from the hospital.  I'm on antibiotics, though and hope to be there for her transplant! As for Amy, she's still doing really well.  The only chemo she's had stomach problems with has been the Cyclophosphamide (aka Cytoxin).  Today is her last day of chemo, though, and we're all glad about that.  Amy's counts have been up and down lately, but she did need a transfusion (they transfuse when she drops to 8 during transplant).  I have been missing her tons, but I get to see her on her webcam sometimes and she can see me too.  She's had her friend over to visit a couple times and that's been fun for her.  Her energy levels are still blowing us away.  The chemo has had a bit of an impact, but not really that bad. She's doing really well, and the doctors and nurses are continually surprised by her energy and enthusiasm.  Tomorrow she starts her Cyclosporine.   We're all excited because our Aunt Nancy is coming back! :)  I promise the next update won't be so long in coming. nic July 4, 2005 1:34 PM PT Hello everyone... Update from Day 2 of Chemo & first day of Bactrim.  Well, Amy took her Bactrim this morning and that was not very fun.  She can usually swallow pills but the Bactrim was pretty big.  She eventually got it down, but tomorrow morning we'll ask them to cut it in half.  Her second dose of chemo went fine.  Tonight we're going to try to see the fireworks from a room across the hall.  We should be able to see the Disneyland ones!  That should be really cool.  Well, I will probably update later on and add some pictures.  Nancy and Margie just left for the airport and we miss them already!  It's not as fun without them! LOL.  We miss their MarioKart skills! Hope you are all well.... nic July 3, 2005 10:37 PM PT Just another quick update....First and foremost, I want to thank Nancy and Margie for all of their help.  I know my mom seconds that!  You have both been so great, and truly helpful.  You've made the move into the new place stellar.  From your interior decorating skills, to your food trips, to your truly mind- blowing expertise at Game Cube, but most of all your humor, you've both truly been a Godsend! Amy's doing just great still....  Extra energetic as usual!  I just wanted to let you all know that I added a bunch more pics to the page.  They are from the last couple days, including this evening.  Some are a couple days old, just hadn't loaded them last night.   Hopefully, Amy will be finish crafting soon and we can go to sleep.  I'm gonna read for now. Hope you are all doing well. Nic July 3, 2005 9:17 PM PT Hello again... Two updates in one day, it's a miracle, I know!  Amy and I are sitting here again just relaxing tonight, getting ready to go to sleep.  Just wanted to let you all know that Amy's first chemo went really well, so far.  She still hasn't had any reactio