6 Weeks Later...

Well, it has been six weeks since Avery's diagnosis of Acute Lymphoblastic Leukemia. While we were relieved to hear this diagnosis, we had no idea at the time of what was in store for our sweet Avery.

So, now that we are 8 days into the 2nd phase of treatment, called Consolidation, we've been doing some more research. This is a link to a page that outlines Avery's treatment plan, all of the drugs, treatments, and timing - feel free to check it out. http://www.cancer.gov/clinicaltrials/COG-AALL0331

Scroll down to the Outline section, then she is in Group I, (SR-low - ALL) and within that she is in Arm II (which includes all of Arm I treatments, plus a couple of additional items). That should make for a nice afternoon light read.

Basically, what it says is that even though this type of leukemia has about a 95% cure rate, Avery faces 2 solid years of chemo. The first 5 - 6 months will be the most intense, with weekly visits to the clinic for various treatments, procedures and medications, with what looks like a couple of short stays in the hospital. At the end of that, she is in for about 18 - 20 months of "maintenance". Even during this phase she will be in daily oral chemo meds and will still have regular procedures and treatments.

Anyway, I understand now why they don't tell you all of this right away, it's a lot to take in. It's really hard to swallow, the thought of our sweet girl going through so much for so long.

She has had a pretty good week overall, though. After today's intrathecal methotrexate (chemo delivered to her spinal fluid through a spinal tap) she came home and slept for almost 6 hours! That was a first for the reaction, but not the first time she's had this chemo.

As I have mentioned several times before on our caring bridge site, Avery still has some hair, for which we are grateful. This topic has generated an undesired amount of hubbub lately and honestly, I've run out of energy for that discussion. Let's just move ahead with the fact that six weeks into chemo she still has a fair amount of hair. For most people, she probably still looks pretty normal, but to those who know her, the loss is obvious. You can see her scalp, and it's very thin at her hair line. So we don't know if she will lose it all, we assume that she will, it just may take a bit longer. The reasons this is so difficult for us to deal with are (1) she's old enough to notice a difference, we've had to actually sit her down and talk to her about losing her hair, and watch her cry at the mention of it. (2) her hair is so much a part of who she is. While we get it that it will grow back, there's no guarantee that it will be the same and her hair was a unique and special part of who Avery is - those piles of bouncing ringlets of gold that prompted strangers to stop and comment and tell her how she looks like Shirley Temple - who knows if those will come back? and finally (3) her hair loss means the difference between looking normal and looking "sick" - she is already self conscious about people seeing her as it is, I know she will be even more uncomfortable once her hair is gone. Sure, she will adjust, as all of these brave little cancer warriors do, but it just stinks. That's it. No need to respond.

Either way, we adore her and she is such an amazing girl, as are her older sister and brother. They're all great kids and I really hate that they have to go through this, but then again, I wouldn't wish it on anyone else.

Thanks to all of our supporters, you guys rock! Much Love!