Henry has been doing so well lately Darr and I were sure that when he went for his latest blood draw his numbers would be parked securely in the normal range. But they aren't. His neutrophil count is at five percent and his numbers are in the 200s again. Argh.We met with our docs yesterday and they recommended extracting more blood to send to the east coast for genetic testing. Henry's numbers did peak at about 2600 but have since dropped. He could have cyclic neutropenia with a cycle that doesn't fit the usual 21-day schedule. Also, Henry is set to go in for an endoscopy. The docs want to confirm with a biopsy that he doesn't have celiac disease and this is a more definitive test than previous blood work. Finally, they have a second bone marrow test on the books for next month if both of these tests come back negative. They also mentioned a rare form of the rare disease fanconi anemia. Yikes.
I'm sort of bummed because I thought we had already counted these out. But I'm confident our doctors, particularly the main guy on the case, are genuinely interested in figuring this all out. The kid's an enigma, what can I say?
And now I shall leave ye with a wee joke:
"Doctor! I have a serious problem, I can never remember what I just said."
"When did you first notice this problem?"
"What problem?"
7 comments:
I'm so sorry to read that his counts are still low and the cause is still unknown. I'm thinking of you three.
What a stinkin' bummer. Would it kill those docs to give you guys some good news already? Hopefully the folks on the east coast can figure something new out. It's kind of cool to think that a tiny part of Henry will be traveling that far.
On another note, I love the fact that he's wearing that shirt with car keys in had. Very fitting.
Henry, you are an enigma. But you are also a very lucky fella to be in the care of such conscientious, smart, vociferous and above all loving parents. We all send our strongest wishes for either a reason or a resolution to whatever mystery is inside of yout.
Did they ever tell you to try cutting out gluten?
Henry, you are an enigma. But you are also a very lucky fella to be in the care of such conscientious, smart, vociferous and above all loving parents. We all send our strongest wishes for either a reason or a resolution to whatever mystery is inside of yout.
Did they ever tell you to try cutting out gluten?
Low counts suck mainly because it keeps Henry from doing a lot of fun stuff out in public. He loves people, especially little ones his age.
Amber, It's from a company called Tiny Revolutionary. They've got some great stuff. This is one of my favorites and it reads: Save some green for me. Drive a hybrid!
Ms. A, I read we aren't supposed to remove gluten from the diet until after the test. Something about antibodies need to be present and they won't be if you aren't ingesting the gluten. I'll ask Henry's docs, though.
here is another joke:
knock knock
who's there?
control freak. Now you say, "control freak who?"
glad you can still joke with such ongoing sucky-ness.
Ugh. It really does suck when something is wrong, but you don't know what it is or what to do about it. Mike's been going through a ton of tests as well - and the last time he was at the doctor she basically said she thinks he's nuts, but will run all the tests anyway.
I'm really hoping that the East Coast doctors figure this out for you guys - and that hopefully it's nothing more than maybe needing to change his diet a bit?
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