the house that love built

I am so into the Ronald McDonald House. Such an emotional experience for me every time I am there. Like the kind words (and cards and letters and packages and prayers) from each of you, it's part of the joy of this experience--getting to witness so much goodness and earnest effort. I even feel lucky.

See "our" house, the very first, here:
http://www.philarmh.org/Chestnut+Street

Day +10

A smiley face on our blood count report today from the nurse:

100 cells on the slide
1000 WBC/ul
hemoglobin 11.6 g/dL
46,000 platelets
ANC: 660

hair loss beginning in earnest (today's bath will be interesting....)

Marian is extremely preoccupied with the fact that Daddy will be here in under 2 hours. She misses him something fierce. And gets to spend a few days with him; I'm heading back to Shippensburg to spend a couple of days with Audrey and go to camp with her. Everyone involved is excited ;).

& for those as fascinated as me:

Day	ANC	WBC	HGB	platelets	# cells
Normal range		5.0-14.5 thousand/ul	11.5-15.5 g/dL	150-400 thousand/ul	Sighted on slide in a defined field
-8	14385	15	12.5	564
-7	8304	8.9	10.7	546
-6	8396	8.7	10	472
-5	6732	6.8	9.4	498
-4	5298	5.6	8.3	492
-3	4730	5.0	9.1	431
-2	4992	5.2	9.2	459
-1	4124	4.2	8.8	448
0	3135	3.3	8.3	396
1		2.6	8.3	342
2		1.2	8.1	241
3		0.3	8.3	182
4		0.1	9.4	140
5	0	0.1	12.4	77	0
6	0	0.2	10.2	60	0
7	0	0.1	9.6	23	0
8	0	0.1	7.7	9	0
9	320	0.4	11.9	91	10
10	660	1.0	11.6	46	100!

A little bit of lightheartedness

All photos in the last couple of days, that show Marian's cheery little spirit is still there, even if she is also tired and grumpy, too.

First, goofy grins for her ice. Ice from the machine, even though it's that cool easy-to-bite kind, is not sterile enough, so I make her custom ice chips by freezing 1/3 bottle of fresh water (meaning it hasn't been opened longer than 1 minute...that's hyperbole, we're allowed 4 hours before is is suddenly unclean), then smashing the bottle on the floor until it is crushed enough to shake out chips. Then into a clean new cup to be eaten with an individually-wrapped plastic spoon. She loves it.
Bathtime karaoke. When we were readying for her bath Wednesday, she caught up the end of her feeding extension (just used for medicines right now because she is all IV--TPN--nutrition) and started singing. So I had to grab the camera and make her do it again.A bit of energy for crafting yesterday, so I pulled out the bin and let her choose (my choices get a lot of "NO!"s lately). She stickered a tin. We've a rich sticker library these days from packages and her trips to Michaels with the $ she earned via project superstar. She had me decorate the bottom with some bits of colorful twine sent to us by my sister's coolio mother-in-law. And did a weird pose with them...

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.

Day 9

New cells!

Day 8

in lieu (temporarily?!) of a good post, here's a something post. No big drama, but lots of medication and electrolyte adjustments, a brief appearance of ketones in the urine, and our first platelet and red blood cell transfusions. And a low-grade fever that keeps flitting in and out. And lots of mail!

A cheery Marian today and a tired mama. Avoiding insomnia, I simply avoided sleep...stupid, because I'd like some now ;).

love, V

the window

The children's rooms at CHOP all have large windows along one side, overlooking the central atrium, outside or, if you're very lucky like us, the emergency room. It spawns a lot of thought that I hope I'll write about...For many, especially in the oncology ward where long stays are standard, window decorating is big. I wouldn't say ours is an artistic triumph, but is organically growing, and Marian heartily approves.
Audrey's panel is on the left. She's getting quite adept at backwards writing.
The center is mine, I guess. Our What a Wonderful World silk scarf and Mare's name.
I'm documenting the making of the right panel below. Coffee filter watercolor flowers and painted-by-Marian vinyl window clings. Both new-to-us projects that you should try, too.
Art therapist Jennifer introduced us to coffee filter flowers. I think they might be a hospital standard, since we know another charming 6-year-old getting a bone marrow transplant in Minnesota who wrote about them on her Caring Bridge site. I know I've seen coffee filters in craft applications before, but I've never indulged, probably since I'm not a coffee drinker, so they weren't handy. I thought their allure was "hey, here's a round circle of white paper that you already have". But more impressive is their durability when wet, awesome for wet painting with young 'uns (look at how wet this paper is!), and (I know, surprising) filter quality: color travels on them in cool ways, even separating into its components. A very tie-dye effect. Materials:

Washable surface. Your painting turns out two-sided, which is awesome for windows, but also means bleed on the bottom. So make sure you can easily clean what you're working on. A paper towel or another filter underneath works, too (plus, cool effects).

Coffee filters. The grande size is great, if you can find it, but everything works. Since they have distinct ridges, crumpling up the filter first helps you to flatten it out before you start. Just go ahead and embrace it, like nice crumply linen pants :)

Watercolor paints. I have to admit this project was twice as cool because Jen brought us amazing metallic watercolors. They cover everything with great bitty mica-like bits of sparkle and I cannot believe I, with an eye out for all things new and kids'-art-related, didn't find them myself. One (there aren't many) upside of being in sterile isolation is that everything has to be new. So the watercolors are now ours!!! Prang brand metallic watercolors. You must find them.

Brushes & water. Oooo, guess why? Bigger brushes are better because you want to splash on a lot of color.

Process: Use plenty of water to work up a generous amount of paint, and let the colors run together.

another option: washable markers. The same water base that makes them wash up nicely also makes water a great solvent for these markers. I think this is a good technique for children whom you don't really trust with paint, but want to give them a chance to play with color--call it pre-painting :). Draw a line design or just scribble, then use a big brush to spread water around. Once you get the filter paper wet, the color will slowly spread by itself. Or brush vigorously (I love that word), and accelerate the process.

If you were holding these in your hands, you would get to enjoy all of the good shimmer :).

Seriously, get yourself some Prang metallic watercolors. Who loved this project most of all? My mom and I. Giddy.

Plenty long, this post. So vinyl clings later.