100 day evaluation

We had an appointment with the bone marrow transplant yesterday to go over Aaron's progress over 100 days post transplant and everything looked great. When Aaron labeled an animal in a book as a "dwarf lantern shark", the doctor told me she thinks his cognitive ability is fine! He had a hearing test last week, and his hearing was off the charts it was so good. In fact, the audiologist told me he should use ear plugs in movies and anywhere with a sound system since he hears things louder than most people. Chemo can sometimes significantly affect hearing, so this was great news.

They will get back to me in a week with results about his current liver function and kidney function, and they will continue to monitor his thyroid and growth hormones. As he approaches age ten they will refer us to an endocrinologist to see if any synthetic hormones will need to be used going into puberty if his growth is not where it should be. I do pray that he will reach full height. I know this is a small thing compared to saving his life from cancer, but I hope that not even one inch was robbed from him.

They also told me that in September they will clear him for going to school, Sunday School, or other functions involving groups of children. The bigger issue with this will be his leg, as a fall during rough play could still be problematic. I think I am going to have a hard time letting go of some of these things and letting him return to normal life, but I know he will soon be ready. He is still on the "fragile" side, in that he gets cold so easily and is overly sensitive to his environment, but the further he is out from treatment the more these things will subside.

Physical therapy is going well, and while it is a struggle sometimes to get him to use the walker instead of crawling he is getting the hang of it. It is a huge help in daily life that I am not constantly lifting him and the wheelchair in and out of the car. Now when we are going out he walks to the car and climbs up into his seat. This small thing makes daily living so much easier!

Please pray as we make decisions - financial, for Ben's treatment, our business. This year (yes, next month it will be one year since the dreadful day this started) has taken it's toll in so many ways and it's not a fun process to rebuild. On the flip side though, the learning and growth that occurs during the hard times is probably the best and most valuable, so I better learn something and be wiser in someway to make this worth it!

Thanks,
Barbara