Back to Transplant

Yesterday Dave and I celebrated our 16th year Wedding Anniversary. We spent it in a meeting with our stem cell team at Childrens. We sorda knew what to expect but hearing the words just really threw me. They are proposing we re-transplant Simon. They, and we in our hearts agree, that the DLI infusions will not be enough for Marrianas cells to take over. We are so saddened by this and know this time what we are in for so it makes it somewhat harder to venture back into the hospital. We will be starting with putting a central port into Simons chest as early as next week so it may have a week or two to heal before starting campath, a drug that will help to eliminate Simons cells beyond what is in his blood stream. He will have that for 3 days outpatient and then we will be admitted to the BMT unit. Prior to that he and Marriana will have to undergo bloodwork for the transplant and Marriana will be getting the GCFS (growth stimulating) shots again. Simon will have chest x-rays and other tests that will check him to make sure his little body can withstand the drugs again. We have decided to harvest Marriana for two days so that we may have extra to freeze in case Simon needs a boost during this process. That means she will be admitted to the hospital for one night. I have not told the girls yet. My heart was crumbling last night and it was all I could do to get through dinner and bed time. Dave and I are scared. There are always possiblities that things can happen along the way and that is why the drs have chosen a little more aggressive approach this time but not the full blown procedure because they don't want to lose Simon. I never think of him not making it but I have to tell you when you hear a dr. say its a possibility, it rips you in half.

We are optimistic. We think this will be what needs to be done to have Simons immune system functioning and he can move forward to a healthy life. Dave and I are planning to get things done and have this going right after Halloween, the girls are so looking forward to dressing up and trick or treating. Dave and I have decided he needs to take some time off of work this time. We just don't have anyone to consistently stay with the girls and honestly I can't be at the hospital 24 hours every day this time. My strength has to be in numbers this time around. I'm not sure how we'll do it but right now all we care about are our kids and getting us all through this both physically and mentally. We will be in transplant the same time our friends, the Browns, will be in Cincinnati going through the same procedure with their 3 year old son so please keep us all in your prayers. Please give our doctors the knowledge to get us safely through this and thank God we have found a group of doctors who care so much about Simon. God Bless you all. Love David and Tracy