September 2006 Archives
Hi everyone. We made it home and are trying to get back in the swing of things. The final meeting was a bit hard for Dave and I to hear since they told us that doing the BMT will fix simons immune system (providing it works) but not other areas it may affect on NEMO boys. This means possibly his organs like liver, kidney and brain. They said don't set yourself up for failure. We were like what? We are trying not to think about those things and focusing on the present and what needs to be done. We need to get his immune system fixed once and for all. Marriana is going to have to go through harvesting again and we are going to see if we can freeze the stem cells in case we need them later so she won't have to go through it again. Please pray the donor lymphocyte infusion does the trick. WE are nervous and praying and praying this will be our saving grace. WE ask for continued prayers. I also invite you all to go to simons web page cure4simon.org to read about the other boys dealing with NEMO. No mutations are the same and some have not been caught as early as ours. They all carry different infections, and consequences to those things. Its so sad. Dave and I are going to register on the Bone Marrow list in case anyone needs stem cells b/c we think if you can help and save someones life, it is important to do so. Please consider this as a way to help as well. We are so happy to be home, and believe it or not, I missed my kitchen tremendously. I could not prepare food for simon or sterilize his things on this trip and it was hard. We also were told to put in reverse osomosis system to our water at the house. Anyone know a good plumber? I'm told this is not cheap. The girls are happy to be home and we will get right back into the preschool days next week. For now, tomorrow we decorate the house for Halloween, the girls are very excited to do this. Take care all of you and enjoy your loved ones at home, every moment. Love Tracy and David
Whew, Well thank you all for the continuing prayers. It has been a long two days. We have spent most of our time at the NIH clinic. Seeing our own Dr. Uzel and Dr. Jain, the transplant team doctors and spent alot of time getting physicals, talking, seeking answers and trying to learn what we can about NEMO. For me its a complete realization that this is going to be a lifelong battle for Simon with all the things you have to be careful with between the NEMO immune deficiency and the ED, which has alot of affects taht are just not normal. I guess I was hoping to come and hear some miracle had occurred but that has not been the case. Wishful thinking. Since Dr. Jain is the one who discovered the gene mutation he is a good source of information. We saw dermatology as well today who was not very helpful since Simon was not having an outbreak and they basically said we were doing everything right in the skin area. The biggest question was "do we retransplant and if so how aggressive do we need to get". We got a preliminary answer to that question which was they think with the t-cells being at the 30% mark we should try donor lymphocyte infustion first (DLI). This would mean Marriana has to be harvested again. There are two ways to do it and one would entail getting both lymphocytes and stem cells and possibly freezing the stem cells in case this does not work and we have to do a full blown transplant. They think we should go this route as if it works, its always "if" we would avoid more chemo for simon and avoid a full blown transplant, if it does not work, we would have to do the whole transplant over. The problem is that Simons crimerism is somewhere around 15% donor cells. 10% means the whole graft has failed. Since his counts of donor cells has increasingly been dropping the thought is that yes the transplant failed. Is it worth it to give just donor lymphocytes or do we just say we want the whole thing redone and hope that it takes. Yes there is a possiblity that we could totally wipe simons cells out and then the donor cells not take in his body. They told us its almost better to have a mixed crimerism of both cells. We don't know what we are going to do at this point. We have to meet with the drs. in Chicago and discuss all the data that we have learned here. It felt good to come and talk to other doctors and hear them say that things in Chgo. were done completely how they would have done them here. We go back tomorrow for a rap up meeting and protocol information and then we have decided to just get in the car and head home. Its been really hard to be in this dinky hotel room with 3 kids trying to get them to sleep. Simon is the worst as he stands in the pack and play and just laughs and the girls get going and whala craziness occurs. Dave and I settle them down and laugh. We were so out of it from waiting so long and trying to entertain the kids today that we were laughing and couldn't stop and as I walked out of the exam room and the dr was standing there looking at me I said "I'm sorry I have to go to the bathroom" and she smiled and directed me, I looked at her and said "my family is making me laugh", this is after they walked in on all of us as simon was thowing up all over me. Craziness will make you crazy. We did manage to have a nice dinner al fresco last night in downtown Bethesda, which is very nice, expensive but nice and we ate pizza out tonight. We are all anxious to get home. We will have to stop again tomorrow night somewhere and we all miss our home, our beds our routine. Maybe we'll stop off in sandusky and ride a rollercoaster for the day. ha ha. Keep us in your prayers. WE love you all and God Bless. Love Tracy and David
We have a date. We will be spending a few days at NIH beginning September 25. After negotiating and pleading they are letting us come sooner rather than later. I am thankful for that. I'm still waiting for the details and for their social worker to call to see if we can get some assistance in getting us there. We are anxious and nervous but excited for the opportunity to get another opinion and for doctors who have actually seen and dealt with NEMO to see and run a bunch of tests on Simon. We are disappointed that our Dr. Uzell will not be there as she will be taking a much needed vacation at that time and saying "I Do", so bless her. We'll miss you. The girls are not quite sure what to think but we are trying to be honest with them and sorda make this like a fun trip. Hopefully we will be able to let them have some fun. I'm told the Childrens INN at NIH is nice and fun for kids so that is good. That is were we will be staying while in Washington. We ask that you continue to keep our family and especially Simon and Marriana in your prayers. Please pray that Simon shows us that the fighting he has been doing is finally going to pay off and we won't have to go through transplant again.
On a normal front our little man started to crawl this weekend. Its a funny crawl but a speedy and determined one nonetheless. He also is pulling himself up and standing in his crib. He barely can see over the top but its so cute to see and really allows us to see how much strength he has built. What a fighter. We hope all of you are back into the school routine and blessing each day that comes to you. We are all so lucky to have our kids and to have those around us who make our life fulfilled. Enjoy your week and we will keep you posted. God Bless. Tracy and David
Well we are heading to Washington. It has been a questionable week of trying to figure out what will be our next step for Simons failing donor cells and what we should do. After talking with our immunologist and another doctor at the National Institute of Health, Dr. Orange at CHOP (Philadelphia Childrens HOspital) and our doctors at Childrens, Dave and I feel we owe it to Simon to make the trip out to Washington to the NIH to have the "experts" of NEMO look at Simon, his engraftment and any other complicated testing they can do at the NIH to help us decided how to proceed with this next stage of Simons treatment. Our doctors feel another transplant is inevitable with the donor cells continuing to drop. We are extremely heartbroken with the thought of having to put Simon, Marriana and our whole family through this again. With knowing what we are in for this time it makes it harder to think of the time in the hospital and the side affects that we incurred (some of which were very scary) with the hope it will work better. That is why we are heading to NIH to get all the information we possibly can to make an educated and safe decision for Simon. I will keep you all posted as to when we leave. We are waiting on paperwork and the word that they will fly us out there. Please continue to pray for Simon & Marriana to be safe and healthy through all of this and for Dave and I to find the strength to endure this once again. God Bless. Tracy and David. Please also pray for a friend of ours who's son is going through an equally difficult medical procedure. Thanks.
