Thursday, September 20, 2012

This is a nitty-gritty post...

Hey All, a later post than I'd wanted, but it's a post nonetheless.

We picked up Anya today, and worked her back into the mix.  Amelie was just bursting with happiness to have big sister to play with.  Amelie is crawling/walking/cruising around the living room...but needs some serious guidance because she's no where near steady yet.

Shel said her steadiness was visually improving as the day went on.  It's so crazy (as I keep saying) to watch her brain literally relearning basic skills before your eyes.

Anya is acting up quite a bit, as you can imagine, as she tries to work through her brain how to handle the sickness and the attention that Amelie is getting.  I can't quite imagine what it must be like to feel so second fiddle...even though we're doing everything we can to keep her from feeling like that.  But in the end, the sheer safety stuff we're doing is bound to make Anya feel slightly different.

We've been recieving tons of gifts, cards, letters, banners, and pictures.  I haven't had the chance to round them up and take pics of them.  I spent all my time after the girls went to bed grading sub work.  It's awesome to not have to work and be able to spend time providing support for everyone...but grading subwork sucks.  But even with the offers from all the other teachers, I still feel totally awkward letting anyone else help me with it.  It's my kingdom and all that other claptrap.

Ok, back to details.  We met with Dr. Patricia Robertson, the pediatric oncology specialist who is going to be designing our Chemo regimen.  She gave us a TON of information, as well as several books, so we can get up to speed on what the next 6-12 months are going to look like.

First up is that tomorrow (Friday 9.21), they are convening a "Tumor Board", where a bunch of different doctors will get together and examine the evidence on a few cases, and then discuss their views.  The pathologist's report on the tumor will come before them, and they'll discuss that report and their opinions of treatment.  Assuming nothing earthshaking comes out of that meeting, they're going to move forward with scheduling chemo quite quickly.

We're looking at at least 6 cycles of Chemo, each lasting a month long.  She's going to get a "port" implanted surgically to handle the chemo drugs entrance into her body.  She's moving into Matt's cyborg territory.

For cycles 1-3, Amelie will be in the hospital for a few days for them to deliver the chemo, and then again later in the month for a few days to harvest stem cells at a certain point in the cycle. They will save these for the later cycles.

For cycles 4-6, they will give her what would be fatal doses of the same Chemo drugs...but also infuse her with her own stem cells.  They explained that this is basically a bone marrow transplant, with your own bone marrow.  During these times, Amelie will have to spend at least 2 of every 4 weeks in the hospital...and most likely more time.  So we're looking at January through April having Shelley and Amelie basically living at Mott in Ann Arbor.

For all the people who have offered to help us, this is going to be the period that is going to be the most hairy for us, and the time where we're going to need the most help. (that's why we're not asking you to help now.  See how we do that?  See....we're tricky like that).  More than anything else, what we will need is help keeping Anya connected, loved, stable and part of a community.

Anya will be staying at Grammie and Papa's place during this time (New Hudson/South Lyon area), and we would love Anya to have playdates/dinner dates/Skype Dates/phone dates coming out of the wazoo at this time.  We'll talk more details as we get closer to that.

After cycle 6, they'll reassess what's up with the tumor, and decide on things at that point.

So....from October 1st(ish) until April 1st... we're looking at the Chemo freight train.  It's going to be brutal. It's going to consume our lives.  But we know we can make it through.

Ok, I haven't taken a pause in nearly 17 hours.  I'm about to fall over.

Nighty night!