Atlanta

What a great conference! The conference was for survivors and dealing with life after a transplant. I was the only one that went before having a transplant. I just want to know exactly what to expect and how to prepare.

I was glad to hear that about half of the parents chose Cincinnati Children's Hospital for their children's transplants. CCH is really the best place to go.

I also learned that once the transplant is over, it is far from over. He could possibly face a lifetime of complications from the transplant. However, most of the complications are manageable and would give him a better quality of life than if we didn't do the transplant.

I could go on and on about the conference, but I will stop now. I am glad I went and feel even more prepared for the journey ahead. I will definitely try to go next year. Anyone want to go with me???

Oh and about Atlanta... I am not a huge fan at all. Maybe it is because I forgot my sunglasses and the windshield of the rental car was dirty and I could barely see where I was going. Or was it the traffic lights that were so small? Or all the one way streets that wound around? Or all the people that just walk out in the middle of the road when cars are driving by?

An amazing person

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.

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.

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.