Somewhere out there in this world is someone we are deeply thankful for. We do not know this person. We don't even know if it is a he or she, black or white, American or foreign. What we do know is that this person is amazing. They have offered Aaron a chance for a normal life without hesitation.
The donor does have plans in the upcoming weeks and asked that we push the transplant back a week. Of course that is no problem. We only hope that someday we can meet this person and thank them personally.
Thursday, September 8, 2011
Friday, September 2, 2011
A change of plans
We have had a change of plans. We discussed the transplant with the doctor and he does not see the need to wait any longer. Aaron has had 3 strep infections in the last 3 months. We don't know how this is happening since we all stay pretty isolated. As part of his condition, he can get infections easily and the infections are harder for him to get rid of. They can also break down his body in ways that do not happen to people with normal immune systems.
We decided to go ahead with the transplant. Waiting any longer is not benefiting Aaron. We have located 2 very good 7/8 live donor matches. I was hesitant because I wanted a full match. However, the doctor says they do not see much difference in survival in 7/8 vs 8/8 matches. Waiting another year is not likely to yield a better donor. The doctor is very confident with the donor he chose. We picked the best hospital in the U.S. for his transplant and I have to believe they know what they are doing :)
We will drive to Cincinnati to be there October 3rd. There is 2-3 weeks of pretransplant studies that will be done (CT scans, Echo, Ekg, labs, etc...). As these are a little traumatic for children, they like to spread them out over a period of time. On October 25th, Aaron will be admitted to the bone marrow unit and chemo will begin on the 28th. A 10 day course of chemotherapy should wipe out Aaron's own immune system entirely. On November 7th he will receive his new bone marrow. Following the transplant, Aaron will be watched closely for at least 100 days to monitor for complications and progress.
We are ready. We have had a year to come to terms with this and we are ready.
We decided to go ahead with the transplant. Waiting any longer is not benefiting Aaron. We have located 2 very good 7/8 live donor matches. I was hesitant because I wanted a full match. However, the doctor says they do not see much difference in survival in 7/8 vs 8/8 matches. Waiting another year is not likely to yield a better donor. The doctor is very confident with the donor he chose. We picked the best hospital in the U.S. for his transplant and I have to believe they know what they are doing :)
We will drive to Cincinnati to be there October 3rd. There is 2-3 weeks of pretransplant studies that will be done (CT scans, Echo, Ekg, labs, etc...). As these are a little traumatic for children, they like to spread them out over a period of time. On October 25th, Aaron will be admitted to the bone marrow unit and chemo will begin on the 28th. A 10 day course of chemotherapy should wipe out Aaron's own immune system entirely. On November 7th he will receive his new bone marrow. Following the transplant, Aaron will be watched closely for at least 100 days to monitor for complications and progress.
We are ready. We have had a year to come to terms with this and we are ready.
Thursday, September 1, 2011
Real Trains
This is the second time we went to see a real train. Aaron seems to stare in amazement. It is nice to get out of the house and do something for a change. He loves trains!
We are also excited that Granny Carol has come back to spend some time with us. She has been gone for 6 months, but Aaron remembers her. He knocks on her door in the morning and says "knock knock." Luckily there is a lock on her door or else he would just barge in on her. He loves Granny Carol.
Thursday, August 25, 2011
My Favorite Things
All day long we play with trains. We take breaks to eat, sleep, and bathe. Aaron also loves to cuddle with his blankets.
Wednesday, August 24, 2011
Monday, August 22, 2011
End of Summer
Summer was great! Our house was filled with lots of laughter and fun. Serena was here and the kids enjoyed playing all day long. We had fun watching Aaron try to imitate everything Serena did. Serena worked hard to finish her first book that we will turn it into a hardback book.
Since Serena left, Aaron has found two new best friends, Thomas and Percy. He developed a love of trains, trains, trains! He wakes up saying choo, choo and goes to bed saying trains, trains, trains.
Saturday, July 30, 2011
Ronald McDonald House
Serena has been asking about the Ronald McDonald House. I explained to her what it was and that we will probably stay there during Aaron's transplant. She wanted to raise money to give them. Both kids did chores around the house. I took them today for a tour of the Ronald McDonald House. The building is very nice with hotel style rooms. Each room has two beds and a bathroom. The kitchen area is huge with 6 or 7 massive refrigerators and three stoves. The place is really neat and a provided the kids great way to get involved. The lady working there gave us little houses to collect soda can tops. Too bad we don't drink very much soda. Serena threw in 2 pennies to make a wish for her and a wish for Aaron.
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