Just when I think I have accepted the fact that we may never have a definitive
diagnosis for Cody and that I am okay with that reality rears it's ugly head. You see
Cody is looking at colleges to visit, he is trying to do the normal things 16 almost
17 year old boys do.... But reality is he has a chemotherapy infusion every three weeks
to control an unnamed disease he has been fighting since our first hospital visit at
5 weeks of age. And now he is having less then 3 weeks relief between those said
infusions.
Although he has been taken care by one of the best pediatric rheumatology
programs around and we have excellent communication with them we are learning
that adult rheumatology is not the same. Cody will be 17 in December so we
have approximately a year left with our doctor and then what???
We are looking into seeing how we can get Cody into see Dr. Kastner at the
National Institute Of Health he is working on a genome project with fever syndromes.
I have a strong feeling that we are going to need some documentation heading into
adult rheumatology and his college career. And really its more than that I have always
felt a great need to know the enemy we are fighting.... just to have a name to put to
this "thing" that attempts to take over our lives so very often.
So we move ahead not exactly sure of what lies ahead... as a quote I read today
said," when God closes doors, you've got to praise Him in the hallway".
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