Late, but still Thankful

Well, he finally did it! Oakley officially engrafted on Friday, 11/23/2012. He actually got neutrophils the day after my last blog post, which was day 19 after transplant. His numbers went like this:
Day 19: ANC 39
Day 20; ANC 29
Day 21; ANC 231 WBC 2,100
Day 22; ANC 120
Day 23; ANC 857
Day 24; ANC 1,078
All we needed for official engraftment was two days in a row over an ANC of 500; so we didn't just barely scrape by, this kid has done it!
We were on the verge of having to artificially cause Oakley's body to prioritize making neutrophils, with GCSF, or Neupagen, but we didn't have to!
Since he now has an immune system, we are off the antibiotics! We are so close to being outpatient, I can taste it! The steps we need to complete now, are to fatten Oakley up, so that he is able to wear his CGM (Continuous Glucose Monitor) and his insulin pump. We also need to wean him down to taking his meds orally, instead of IV. We also need him to get his oxygen needs figured out. He has needed some extra help for the last few days, primarily while he sleeps. He's been breathing faster than he normally does, and they think he might have a virus of some kind. He has also had some blood in both his stool and his urine, but they aren't too worried about it for right now, because the most common culprits post-transplant aren't huge problems.
We have had a lot to be thankful for the last couple of days. Oakley's gaining weight pretty steadily. He had a big jump last night, he weighed 6.999 kg (15 lbs 6.8 oz) this morning, but yesterday came in at 6.742 kg (14 lb 13.8 oz), so I'm assuming they'll be giving him a diuretic to slough off any water weight. He's still not eating, so all of his calories are via his TPN; and the docs want to keep it that way until his breathing steadies, to make sure we avoid allowing him to aspirate any food.
We got a couple of fall pictures for Thanksgiving, and since I put the tree up, a couple of pictures of Oakley with his first Christmas tree.

Love you all!
Samanatha, Trevor, and Oakley

Monocytes

Sorry I haven't updated; I keep thinking, "He'll have neutrophils tomorrow, so I can post once we have some awesome news," and then it doesn't happen. The doctor was surprised that there aren't any neutrophils yet too. He has monocytes, which are building blocks or "grandparent" cells to neutrophils, but no big guys yet!
He actually had monocytes on day +10; they were obliterated on day +11 because of his final dose of methotrexate (chemo), and has had them again since day +13. He has had over 500 for over 3 days so far...and that's the biggest reason the doctor is surprised they haven't found any neutrophils.

neck fat is starting to come in

He keeps puking, but that seems to be getting a little better. His insulin needs have been bouncing around more than we thought they would, he's down to .145 units of insulin per kg per hour; his usual sweet spot was .18 and his all-time-high was .55, so we're pretty happy about this new found ability to not need so much insulin.
He's also gaining weight like a champ; but no thanks to me. He still hasn't decided he has an appetite, but his TPN seems to be doing the trick anyway. He weighs 6.7 kg (just under the 15 lb mark!) and is getting a double chin, but is still ripped and looks like a body builder.

He had some visitors the other day, they were dressed like pirates, and they came bearing gifts. He got a tubie friend; which is a stuffed animal with tubes, so that it doesn't seem so weird to be the only one with tubes and wires. Oakley got a monkey that is almost as big as he is, and his monkey has a port (which is what Oakley will probably end up with down the road...it's a line that can be removed when not in use, like a thimble-shaped funnel under the skin, with an iv hanging out of it, then you can remove the iv and put one back in pretty easily as well as give injections with much more ease). I wish Oakley could have a port sooner, because with a port, you can be submerged in water, and Oakley still hasn't had a full-immersion tub bath. We have so many firsts still ahead of us, it seems weird that he probably won't fit in the sink by the time we go home to try and give him a sink bath (they make some of the best pictures!), and he still hasn't ever met a dog or touched grass. I am excited for our future, even though I'm a little saddened that so many of the baby stuff will never happen.

He's such a "hoser"

We're still in a tiny room, but it looks like we'll be here for a while. There are several other kiddos on the wing here who got their transplant the same week that Oakley did. We're doing so well, we hope to be outpatient come mid-December. One of Oakley's doctors said that was a reasonable goal. We'll have to be here in Seattle for 100 days post transplant for outpatient care, which is a bummer. I was really hoping we could celebrate my birthday at our house in Boise as a family. February 7th is the earliest we would be able to head home. We'll still be in isolation from large groups and we'll still be limited on contact and be avoiding anyone with a cold, but it will be nice to be in a familiar place, with friends and family nearby.

I had to give Oakley a temporary tattoo to adorn his freshly shaven head; and found this Idaho 4H stick-on from the fair a few years ago, I thought it was pretty funny, the doctors had to make sure they noted it wasn't a fungus when it started to wear off!
We're bummed to be spending Thanksgiving away from everybody; and sorry we're going to miss your birthday Dad (Grandpapasan Davis); but we'll try to make up for it double next year! We have so much to be thankful for, and with kids all around us doing far worse than Oakley, we try to remind ourselves that we could be so much worse for wear. We hope to be posting about Oakley having neutrophils soon!
Love,
Trevor, Samanatha, and Oakley

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

Trick or Treat!

I just wanted to let everyone see Oakley in his Halloween wardrobe; he got to change several times, so that we could make it through all of the costumes. They let us put the pull-overs on him for the day, so he got to wear them all!

We had initially planned on having a Halloween week, so he could dress up for longer, but this didn't turn out so bad.

 Here he is in his baseball uniform/outfit. We couldn't find his baseball cap. He also had a bat and ball; but with the move to ICU, it has gotten misplaced.

 Here was most of the medical teams' favorite costume. He's a doctor/surgeon. They liked it so much, that they went and got the hair net and mask accessories.

 this was  Trevor's from when he was a kid.

Look out Ralph Macchio!

 Mommy was a ballerina! Pretty much any excuse to wear a tutu...

 Pumpkins aren't allowed in the hospital, because of fungus. If Oakley got a fungus at this point, it would likely be fatal. We got these pumpkins that are carve-able, but we didn't want to make a mess, so we also got the Mr. Potato Head-esque Jackolantern decorating kit.

 The mustache came from a kid's meal that I got at McDonald's. It was a Scooby Doo trick or treat pail, that came with stickers to disguise Scooby for Halloween...I think they fit Oakley quite well!

 The snorkel-looking thing here, is CPAP; which he was on for most of the time. He only got short nasal cannula breaks to avoid breakdown on his nose.

Idaho Potatoes
He was  my lil spud!

Family Picture!

Random Goatee sticker

I am a walrus

We hope you and yours had a fun and safe Halloween! Next Halloween, Oakley should be cleared for normal life...Because he'll have a normal functioning immune system! We can't wait.

His oxygen needs are seeming to resolve, his doctors are wanting to try him out on the regular flow nasal cannula to see  how he tolerates it. We are excited at the prospect of not having the snorkel on his face!

 As of today, he still has no white blood cells whatsoever (which we kind of expected). The soonest that his neutrophils are expected to come back is at day 7; and we're at day 3 today. He won't get any lymphocytes (so he's able to fight infections off) for up to a couple of months from now.
We'll keep you updated with our little guy's progress!