Friday, May 2, 2008

Day +9: more from mom

Reading with Miss Joan during today's school session. Her teacher is a lovely, gentle person. And Marian reads for her! (won't for me).

I can't get much blogging out the the little one lately, though the last really was her.

The "new cells!" pronouncement really is an exciting one: it's a sign that Audrey's marrow has started producing a measurable quantity of new cells. We won't have "for sure" data that we're seeing Audrey's cells rather than Marian's cells until 30 days, when a blood sample will be PCR amplified and compared to samples taken from both girls before everything began, but the general assumption, particularly this early is a happy "yes." Daily blood counts are generally done by machine, but a smear is visually checked as well, counting the number of white cells in a defined field. We've had 0-0-0..., then today: 10! Her ANC, or absolute neutrophil count, is now 320, again after some time at "0" (normal is >1500/microliter). A healthy batch of newbies. Neutrophils are a type of white blood cell that fights infection, little warriors that rush at infection and suicide burst with a little splash of peroxide; their dead little selves are much of what you see in pus. This type of white blood cell is particularly used to track the development of new cells because they have a lifespan of less than a day, so we are assured that these are not residual white blood cells, but fresh-made beauties whose numbers testify of busily working new marrow.

For some children, these couple of days surrounding engraftment can be some of the most difficult because the new cells go right to work busily repairing the usual wear and tear that the body had neglected when it had no warriors to send out. Marian had a pretty good fever going late last night (now passed), and we're hoping this is the explanation for that. I think she's feeling pretty well, though obviously doing hard body work. She was energetic this morning, but somewhat cross today and crashed to sleep around 1:30.

Red blood cell and platelet transfusions yesterday, because her counts finally dropped below THE LINE. She did start to have tiny pinpoint bruises caused by the usual capillary breakage not being stopped by the usual platelets. They're called petechiae. I have found it very interesting, though of course it makes perfect sense, to see how ruddy she is today after being so pale yesterday. Look at them RBCs.

Her mouth is redder today, finally inflamed because there are WBC to do the inflaming. Her throat has been pretty scratchy, and of course her gut is a mess, but it looks like the dreaded mucousitis, the mouth and whole GI tract sores that are some of the most painful side effects of chemotherapy, has been avoided. No blood or visible sores, and she has not needed morphine. Our nurse on the day she received her malphalan, the mucousitis culprit, said some research has shown that sucking on ice or something else very cold during her infusion has been shown to reduce the effects. We did, and I'm very happy that, via that or good blessings, she seems to have slipped it by. I'll cheerfully accept either (likely both).

We expected hair loss to start a couple of days ago, but have seen our first loose hairs today, and her scalp was ultra-sensitive during her shampooing today, also a sign that the hair loss is beginning. I had my mom bring us the clippers last week to buzz her head when needed. Earlier, I was all for just shaving it all off at the first sign, to avoid the mess and the trauma, but the team here thinks I should wait a bit; her hair is so thick that she could lose 2/3 of it and still look like a normal 6-year old, with a sleek little bob instead of le pouf. So now I'm waiting for a bald patch. I'm much less distressed about the little hairs left on the pillow than I thought I would be; certainly seeing all of the little bald heads on this floor has normalized it. Plus, as we've written before, Marian is looking forward to it. We may not, however, feel the same way 5 or 6 months from now (usually takes 3 for a little growth to start again)--such a visible tattoo of "sick." My dad hated hated losing his hair, and it surprised me, because he wasn't really a concerned-with-appearance sort of guy. But it was the looking sick that bothered him, not the looking bald.


Courtney said...

I love seeing all of your pictures Marian. I hope things continue to go well.

Why are fish so smart?

Because they live in schools!

Mary Anne said...

Good to hear promising news! I have to tell you I look forward to getting on this blog every day (with some fear of course of bad news). Marian - you can almost see the light overflowing from that sweet soul of yours.

Grace's joke: Knock Knock!
Who's there?
Are you an owl or

Misplaced Country Girl said...

Your family is a true inspiration. I continue to think of all of you everyday and pray for you. Stay strong.

Tracey said...

Marian! You look so comfortable curled up with that book!! Mrs. Serr would be SOOO proud, and of course I am too! I hope you like "school" and your new teachers, but we miss you at GBLUES!!!
Miss Feldbauer

The Seals said...

Marian you are just too cute !! I look forward to reading about how you are doing. My hair is looking like peach fuzz now that I haven't had chemo since the end of Feb. I start back up May 13 so it may not get much longer. I am going to think of how strong you are when I am going through mine. You are in my prayers.

vfg said...

Your jokes made Marian giggle this morning, and she loves to hear all of your comments. Thanks for keeping up with us.

sallyavena said...

Somewhere I've heard of someone making an ice slushy in the hospital, when told to eat only ice (I can't remember who though). They would take some sugar and some of the little creamers that they serve with coffee and mix until desired taste. I don't know if it's an option, but thought I'd share, if perchance Marian is getting board with just ice.