Just when things seem to be going great……….
No Chemo for Matthew for Thanksgiving.
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Matthew’s blood is not co-operating. Its almost like it knows that it is time for more chemo, so it shuts down. His platelets are too low for chemo. His ANC count is great (white bloods cells/immunity). The chemo seems to attack the platelets most.
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Matthew got blood drawn on Monday, on Tuesday I called for the results. I finally got them late yesterday. I was shocked when I saw that his platlets were at 50, they were at 166 seven days ago (normal platelets are between 175-350). I know that CHOC has a protocol to transfuse BT kids under 50. Well, no phone call from CHOC. So, this morning I went down to the clinic and demanded another blood test. I got one and sure enough his counts had dropped to 41. You need platelets to clot, so if your blood gets too thin it can cause serious life threatening problems. The doctor at the clinic said, he can wait until Monday. I was not ok with that, especially since we have a long four day weekend. Result: I spent all day at the clinic, but I finally got platelets at 4:30pm. Remember all you moms/dads out there, you are in charge, because no one cares as much as you!
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Matthew is doing fine, he played video games all day. He was upset that he got poked twice today and proceeded to tell the nurse he hated her. They made up by the end of the visit. His little arms are all black and blue from needle sticks and low platelets, the combo makes for ugly bruises.
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The Rager family wishes everyone a Happy Thanksgiving. We have a lot to be thankful for this year. In what many would deem a bad year for us, we would disagree, many blessings have come from Matthew’s diagnosis and I know many more are to come.
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Thank you for your continued prayers.
Matthew and family: all our love. I wish this were easier.
That was one point I didn’t make clearly earlier. It isn’t just parents who are in charge, it’s everyone who has someone who is sick and in need. Demand that they get attention, like this woman did. And I hope her son gets better.
It’s never easy.
Dan, thanks for posting this follow up.
I might have made a difference here, and that would be because of you.
Oh, I forgot to call you a heartless neocon, psychosexually disturbed, evil scumbag. But mad props anyway.
cranky-d:
Amen to your point, and to your earlier post. The familial caregiver almost always knows more than the MD or the RN, ’cause they’ve been following the case since before it showed up in the confines of the hospital. I’ve learned this lesson well in the last two years with my daughter (who had multiple congenital defects – spinal, heart, gastrointestinal – at birth, three open-heart surgeries, and who finally returned to the angels from whence she came this past July). The important thing is to show the ‘trained staff’ that you know what you’re talking about in incremental steps to (a) gain their trust and willingness to rely on you as needed, and (b) keep them from thinking you’re an a-hole with a wi-fi connection to WebMD and who is looking at every sign like a hypochondriac.
Oh, and the staff really do tend to like a patient buffer. Anyone willing to help with bedpans, clamps, refilling the water pitcher gratis is viewed as an asset. As I told my daughter’s nurses several times, “I’m probably the most expensive free clamp you’ve ever used.”
Oh, and tune out the HR and BP monitors as fast as you can. These things can truly drive you insane.
Dan, thanks for the update.
Kevin:
The good nurses really appreciated the help my family would give. My sister and brother already got props for helping them out with my father. Hospital staff are always busy.
As far as the monitors go: they already turned off the display so my sister couldn’t see it. From what she told me the numbers looked scary from the point of someone who is not in the hospital. I reassured her that as long as my father wasn’t exerting himself unreasonably he would be fine.
For reasons I won’t (and can’t) go into, I spent the better part of several months in a pediatric oncology wing at a local Catholic children’s hospital 16 years ago. The only thing keeping it from being Hell on Earth was the fact that it is staffed with absolute angels. If there’s anything worse than having a child with cancer, I don’t want to know what it is.