Aaron's Hyper IgM Journey

Monday, November 29, 2010

Hope is powerful

Saturday night I laid my head on my desk and cried. I felt defeated. I received another bill in the mail; this one for $898.85. Also in the mail was information sent by the NMDP with information regarding bone marrow transplants. Aaron had been registered by the transplant team in Tampa so they could do a search for his marrow. With so many bills to pay and serious life changing decisions I have to make on behalf of my son, I am very overwhelmed. What if they don’t find a match? What if they do? Should I go ahead and give him a transplant with an unrelated donor knowing that the risks could alter the quality of his life for the rest of his life. Graft vs host disease is real and it is common. Should we wait and try to have another child of our own that would be an identical match and a much better donor for Aaron? Where will we find $25,000 to do that? How can a mother face her child years to come and say, “I am sorry we could not find a donor for you and could not have another child to save your life?”

With tears in my eyes and a heavy heart, I lifted my head and prayed. There was no way I could figure this out on my own. I cried a little more and began to clear my head and answers started pouring out. I realized I could stop paying into my 401k for next year and that would help pay for a live in babysitter for Aaron. I realized I could ask the church for help. I belong to a large church with many resources. I asked if they could help me set up an account for Aaron that people could donate tax deductible donations. They were unable to help, but gave me some more suggestions. I spoke with my sister and she said that her family makes donations each year and that this year, they could donate their tax deductible donations toward Aaron’s bone marrow transplant.

I decided from the first day that I found out about Aaron’s condition, that I would not ask, “Why me?” or “Why is this happening to Aaron?” This experience is definitely the most tragic in my life, but it is also the most uplifting and inspirational time as well. The support we have received from family, friends, and strangers has been incredible. Without going through such a difficult situation, you cannot possible know how good life is and the power of prayer and the power of people. Whether Aaron is meant to be with us for a short period or a lifetime, he is the greatest gift I have ever been given.

Sunday, November 14, 2010

Walking

Aaron decided to let go and walk last week. He is so funny. He will be ready to do something for a long time, but won't. Then one day when you aren't paying much attention... there he goes. That was what happened last week. He has been walking along furniture since he was 9 or 10 months old. He would even take one step and then sit down. On Wednesday he decided to walk half way across the room for no apparent reason and he has been doing it ever since. Today he stood on his tip toes, opened his bedroom door and walked right outside to the hall. Wow! video

Turning your head sideways may help view the video better. :)

Thursday, November 11, 2010

Dr. Sleasman

Dr. Sleasman is the pediatric Immunologist in Tampa. He has been directing Aaron's care since he was admitted to Arnold Palmer in September. He says Aaron looks great. Aaron has gained almost three pounds in three and a half weeks. He started walking without holding on yesterday. He walks all over the house. He babbles and babbles. Looking at him, you would never know he was sick!

Dr. Sleasman wants to do a bone marrow transplant as soon as possible. They began the HLA typing necessary for the bone marrow matching. The results should be back in 2 weeks. We should know by then if there is a match for Aaron. Please pray for Aaron that he can find a match. The doctor says the sooner Aaron has a transplant the less likely his body will develop a rejection to the transplant.

We met the transplant team. They are incredible people. Everyone was super nice and made us feel confident for Aaron's future.

Thursday, November 4, 2010

Aaron's 2nd Halloween


Last year Aaron went out Halloween night even though he was only 2 weeks old. I remember how proud I was to show off my little pumpkin. What a cutie! This year we didn't go trick or treating because Aaron is not supposed to be around people yet. Instead we took him for walks during the day to look at all the Halloween decorations. He loved them. He would kick up his legs and laugh and he even sang once for his Grandma Cindy.