Our 9:30am appointment today in the out-patient Phoenix Children's Hospital Oncology/Hematology Clinic wasn't a short one.
Ori's hemoglobin and platelet counts were low when we got there, so we had to wait a couple hours for a bag of platelets to arrive before they could perform the spinal tap and bone marrow aspirate.
That stretched out the time that he had to fast for the procedures (from waking up this morning until the procedures ended, around 2:00pm). Not the easiest concept to explain to a hungry 2-year-old.
During the procedures, Ori was consciously sedated. He was able to see and hear us comforting him, though was loopy enough to not move much or respond, and was given a drug to help him forget the experience.
Then he needed a blood transfusion (not uncommon - the chemo last week did its job, but in the process killed many of the healthy blood cells, too). That transfusion took a couple more hours. And at the end of it, just as we were ready to leave, Ori displayed a negative reaction to the blood in the transfusion.
His face, ears and scalp lit up red like a sunburn (and hot on the skin's surface like one, too). The blood was fine, but the doctor thinks with two transfusions so close together (10 days), there were probably certain antibodies in each of the two blood products that interacted with each other, creating the red-skin reaction.
So he was given another medication to relieve the redness, and then we were finally on our way at 5:30, eight hours after our appointment began. A memorable birthday for Kaye, to be sure.
The good news is, beside the redness subsiding by the time he went to bed (which was as soon as we got home - he had no nap), Ori's bone marrow aspirate showed that he's already responding to the treatment at a high rate. So much so, he's what they classify as an "early rapid responder."
But the important results they look at are from next week's visit, when they'll determine whether or not he'll need a more aggressive, more intense treatment regimen. But so far, so good.
And what more could we ask for?
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4 comments:
Whew, well after 8 hours at least you left with positive news!
You are certainly wiser on your birthday Kaye!
A package is ready for me to drop off at the post office...that will happen......well soon I hope!
Kate
A drug to forget the experience? Sounds a bit like Men In Black. I imagine a lot of this feels other-worldly anyway. I'm glad to hear good news and am hopeful you will all get some good sleep tonight.
You 3 sure have been through a lot. I know how hard this must be for everyone (from the medical and the parent perspective), but I am so glad to hear he is responding well already! That's wonderful news. Please continue to keep us posted....we'll be thinking of you all.
This is so good to hear -- I bet you are learning more about the medical world than you ever thought possible. Thinking of you and keeping Ori in my prayers!
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