Hair Schmair, I've got a chemo-hawk now!

The beginning of the hair loss

Che-mo-hawk

So, a few nights ago, Oakley's hair started to fall out. We thought we'd just let it take it's natural course and that way, if it all fell out, it would; and if some of it decided to stick around, we'd let it. That lasted about 2 days. It's like having all the terrible things about having a dog, with none of the positives. In addition, it was getting stuck in his slobber, his eyes, and neck creases. Today, I stopped tolerating it, and took a pair of medical scissors to it. As I was hacking away, Trevor told me to just shave something funny into it. We decided he needed a mo-hawk; but not just any mo-hawk, a chemo-hawk. It's got some sweet steps in it, from the scissors, but it's funny and functional at the same time.
He's finished all but one day of chemo. He had his pre-transplant chemo; which was 5 days of Fluderabine, Treasulfan, and ATG (rabbit ATG, if it matters to you); then his day of rest, his 2nd day of rest (Thanks to Hurricane Sandy) and then his transplant. He has also gotten Methotrexate on days 1, 3, 5, 7, and will get it for the last time on day 11. After three days of being done with all the poison; they said we can start to hope for engraftment and we might get to see neutrophils (white blood cells that are the primary immune workers). We are really hoping for some neutrophils as soon as possible; because then we won't have to worry about him being so susceptible to disease without any defense. At this point, a stinking cold could kill him (it wouldn't-they'd send us up to PICU and we'd be on anti-virals, antibiotics, and anti-fungals until he was cleared) and we're isolated from the world.

With our recent agoraphobia  I've taken my knitting back up. So far, I've knit scarves for Trevor, myself, and Oakley; as well as two hats for Oakley, and a stuffed hedgehog and a stuffed owl. There's a group of older ladies that come to the ward once a week for knitting circle; and they bring donated yarns and knitting needles and they teach people how to knit. I've had a blast with them, and it's a good way to meet some of the other parents without having to feel awkward.

I can't remember if I've written since we landed back down on the SCCA floor-and I'm too lazy to look- so if I didn't mention it; we're back downstairs and out of the PICU. We're in a very small room, but we're happy to be able to function more as a family. We get to snuggle together on our couch, we get to take over a lot more of the care of Oakley, and we get to use the bathroom in the room. I like being down here, even if it is more work and less sleep. In PICU, we could have both left for the night, or for a date, but down here, we have to have someone to watch Oakley; and since he still has no white blood cell counts, it has to be the nurse or a CNA willing to sit for us. We've only left simultaneously one time, this morning, for a doctor's appointment that I had.

my first bloody nose!

I've had chest pains for nearly three years now, and I was referred to the Center for Pain Relief here in Seattle, and they injected steroids into the cartilage that connects my ribs to my sternum today, under ultrasound. They actually found something, but told me my regular doctor would have to follow up on it to tell me what the irregularity was. I'm assuming it's not life-threatening or really serious, since I'm not admitted to the hospital.
Back to Oakley, he's been doing awesome on his road to recovery. His mucositis is very minimal; but he has started puking a lot more often. They've started a schedule of anti-emetics for him, so he's going to be on Reglan and Benadryl and Ativan around the clock to try to save him from puking so much. When he does puke, it comes out his nose and his mouth, and we have these neat little suckers that we can suction out any remainder vomit or any boogers with. Tonight, as I was suctioning his nose out, Oakley decided to help, and VIOLA! He got his first bloody nose! Sorry for the disgusting picture, but I thought it deserved a photo op.

The glue from the EEG didn't help the hair loss situation

No Mom, EEG's are so fun, really...

Oakley's been having more...tremors I suppose you could call them. His legs start to shake, and his whole body stiffens up, and he basically looks kind of like a fish flopping on the ground. He had an EEG to make sure they weren't seizures; and they're not. They're going to test some of his levels to see if they're caused by his malabsorption over his life (B12, zinc, copper). If not, they want to do a lumbar puncture and some MRI tests to look for other things that could be causing them. We obviously hope it's something a vitamin can fix, so the poor kid doesn't have to go through even more tests.
I want to thank you for your support; I know there have been so many out there who've helped us out, and we are so appreciative of the love we are receiving from everyone. It's always nice to feel support when you're far from home.
We're counting down the days until Oakley has some neutrophils-it's the first sign of engraftment of the bone marrow- and we're anxious to be able to share the news when it happens! Thanks again for your prayers, love, and support!
Love,
Trevor, Samanatha, and Oakley

With his hedgehog and his owl

His owl and his matching hat