Aaron's Hyper IgM Journey

Thursday, June 30, 2011

Saturday, June 18, 2011

Daddy's Birthday


Serena picked out a remote control helicopter for her Dad. It was a huge hit. Michael had to fight to use his gift. Serena wanted to take over the controls and Aaron balled his eyes out when he could not eat it. Michael is getting the hang of flying it. We only have one broken propeller so far.

Serena also made him chocolate cupcakes with white frosting and coconut sprinkles (her own personal creation). Those were also a hit.

We love you Daddy!

Pirate training



We just have to laugh! What else can we do. Now it is eye patches. Aaron has exotropia. His left eye follows normally, but the right eye lags behind causing a double vision. We patch his good eye 2-3 hours a day to build up strength in the right eye. I must say, Aaron is a champ. He takes it all and runs with it (literally). Nothing stops him. He is getting good pirate training! We will have to take him on The Rose Family pirate cruise sometime:)

Wednesday, June 1, 2011

Cincinnati


The Cincinnati Children's Hospital is like a small university from the outside. It is huge and right downtown. There are about 7 separate buildings on the main campus that are all interconnected. The parking garage is underground and a bit of a maze if you don't know what you are doing. Luckily we made it to our appointment just in time for 8:30am.


Aaron was assigned to the Lion room. We saw so many people I can hardly keep track. First the nurse came in to take his vitals. Then a fellow came in and got a background on Aaron. She said we are making the right choice having the transplant done here. She says they do more transplants for immune patients than cancer patients. That is probably unique to this institution. I believe the most common cause for a bone marrow transplant is cancer and that is the majority of patients at all other institutions. This bone marrow transplant group specializes in immune disorders. We already knew that which is why we drove 15 hours to see them:)

Then the doctor came in to discuss Aaron's future. He has a very different approach than Tampa. He wants to use a live donor rather than cord blood. With cord blood, there is a one time use only. If engraftment does not occur, there is no reserve. However, with a live donor they will take more marrow than they need just in case it is needed. The risk is graft vs host disease is generally much more common (and often much worse) when using live donors. This was a lot to take in and will require much prayer and education. However, we will most definitely use Cincinnati Children's Hospital since they have the experience and one of the highest success rates in the country.

Next we met with the transplant coordinator and the search coordinator. They were both very nice and will be our go to people until the transplant.