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

Liver enzymes normal!

Last week they added another liver enzyme test to Aaron's blood work and I got a call that it came back perfectly normal! They are not sure why the previous one had been elevated, but thankfully it is fine now. Also, Aaron started physical therapy last week at PCH. I love his therapist and so does he, and he did a great job. He will go back today for session two. I'll get some pictures to post, and you may even see the slight shadow of hair! His eyebrows are back almost completely, and there is a very fine smattering of hair now on his head.

Ben finished his assessments and as I expected he was diagnosed with autism. The good thing about the diagnosis is it should mean help in getting services. Please just pray that I can find what works for him. I see all of things he can do - he understands what I say, he is very affectionate, he makes great eye contact - and I think that he can make great strides.

I saw this poem, and I thought it was really great. I'm so thankful that at least I have people who will let me talk about "my shoes".

"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown