Let's get it on

After a too-long but highly-enjoyable timeout, we are back in the game. Hayden's blood counts easily passed the minimums to start the Interim Maintenance (IM) treatment phase today. So he received meds intravenously at the clinic and tomorrow is a spinal injection. The injection thing sounds bad but it's just another trip to the pediatric day unit (PDU) and he's asleep for the procedure. As I said in an earlier post, it's bizarre to think of the things that have become 'normal'.

We're keeping a close eye on Hayden's nausea and tummy issues. This just started today so it can't be chemo-related (it's too soon!). We did however stop a med that, among other things, enhances his appetite. We'll see how it goes...may be re-thinking that. <>

There are a lot of conflicting emotions about re-starting chemo...we hate the side-effects but we hate the cancer more. The sooner we get through the treatments, the better life will be. Starting now, we've got 2 months of IM ahead so it's time to put our game face on.

Funny story - I was talking to Tom on the phone about Hayden and reluctantly (because H was listening) I mentioned that he was a bit moody earlier with his Grandma. H asked what moody meant so I explained that it's when you can't decide if you're happy or sad. While he quietly reflected on that (and I started feeling badly), I added that he couldn't help it. Still no response. So I asked, "How do you feel right now?" He replied, "Good...no wait...bad...nope good..."

Bone Marrow Results

It's fine...the doctor and pathologist didn't see any leukemia, and blood cell counts are trending up. In other words, they saw exactly what they expected (all good!) so we hold tight until next Tuesday's clinic visit and blood test.

Today's bone marrow procedure went OK until it was time for a new nurse to remove Hayden's port access. He asked her if I could take it out but she pretty much yanked it (without removing the tape) while he was talking. He yelled 'That friggin hurt!' loud enough for the whole ward to hear. Then he let her have it...and I totally backed him when she responded with 'well, you should've told me'. She apologized and said that she didn't realize it was a new kind of clip, but Hayden knew exactly how it should be done and was really trying to tell her. I feel bad that I didn't ask her to step back and listen to him...that won't happen again.

Clearly, it wasn't the short-lived ouch that angered him - it was because she didn't follow the routine and totally disregarded him. And when he's right, he's right...I wasn't about to talk him out of it. I doubt this episode will taint his attitude for future PDU visits but he will be oh-so vigilant next time. Yep, that's our boy.

The puncture wound was a little tender for a while but he managed to later slay mom in a lightsaber fight and get down to 'Kung Fu Fighting' with dad. I'd say he's over it.

What the...

They went down! Those damn neutrophils actually went down. Even Hayden's doctor seemed surprised...so rather than starting the Interim Maintenance phase, we're going in tomorrow for a bone marrow test. His blood work indicates that Hayden is simply recovering from the last treatment phase but Dr. Stoffman wants to see what's going on in the marrow and make sure that the leukemia is not on a come-back streak.

Hayden's weight is up again - more than 1 kg. It's good for him to start the next round of chemo with a healthy body so there is an upside to this delay. Plus, Hayden is totally happy to sit on the sidelines for a while, and it's nice to see him happy. I'm collecting mental pictures to get through the not-so-happy times. Perhaps I should describe those in a future post so someone can remind me about this sweet little kid later when I'm dodging puke pans. Thankfully, I have some time because steroids don't enter back into the picture until the Delayed Intensification phase (after the next one).

So disappointing results from today's clinic visit but it's hard to take it badly when, upon leaving, Hayden remarks that it was just like a play date for him (he's met some terrific friends there!). He's also very comfortable in the pediatric day unit, so tomorrow will be a breeze too. Not sure when we'll get the bone marrow results but I'll post them as soon as I can.

Run!

Very cool - our friend Christa is run a 1/2 marathon in Hayden's honour to support the Canadian Cancer Society.

It's the Winnipeg Police Service Half Marathon and money raised goes to research and programs that help Manitobans battle cancer. You may not realize it (and I hope you never need it) but we have some outstanding facilities/programs in Winnipeg, which I believe attracts outstanding medical professionals...and that's so important! But there's a long road ahead to find out why perfectly-healthy kids like Hayden (and too many others) are afflicted with various forms of this dreaded disease. Research will lead the way to better, faster, easier treatments for everyone.

Please donate or come out on May 3rd to cheer on Christa and the rest of the runners who are taking on this important cause (marathon details to follow).

Online donations: https://www.runningroom.com/dashboard/donations/index.php?raceId=4133&eventId=14336&memberId=BGQKPQRgVzdQPwI0ADE%253D&item=8&guest=1

Go Christa!!!

Missed it by that much

Sooooo close.

Hayden’s blood count test came back with neutrophils at 0.71…we needed 0.76 to start the next treatment phase. Next Tuesday, for sure!

Hayden doesn’t mind the delay. He’s feeling good now and not at all looking forward to more chemo (Interim Maintenance will last about 2 months). His weight is up – which is no surprise because he is constantly eating. He’s still not into sweets but some things that he didn’t previously eat, such as Kraft Dinner, are now part of his diet. He weighs in at 20.2 kilos (44.5 lbs), which is still down from his pre-cancer weight of about 52 lbs. So, he’s skinny but his face is starting to fill out and there’s a little more meat on his bones.

A low neutrophil count also means no public outings (aside from school) so Hayden will wear a mask to go shopping for Daddy’s birthday present. But his counts should be good this weekend, so we’re all going out for dinner for the first time in a long time. Oh yes…Daddy’s hand sanitizer will be there in full force! And each squirt will be preceded by ‘just in case….you never know….can’t be too careful….doesn’t hurt…’ (hehehehe even if he reads this first, he won’t be able to stop himself).

I remember this little boy

Hayden’s gone more than two weeks since his last chemo treatment. It’s certainly not an ideal situation but it sure is nice to spend a little time with the real Hayden. If fact, we didn’t know how much we missed his true personality until now. His smile, sense of humour, affection…all of it returned as the drug side-effects subsided. What a sweetie. In fact, he seemed to forget about his problems for a bit….however, reality quickly set in after a nose-dive into the area rug when he bolted off the couch to run across the room. Call us crazy for laughing but we did…all three of us howled and it felt just like old times. This might be the little break we needed to recharge.

Our next clinic visit is Tuesday, March 10. That’s when we find out if his blood counts are high enough to start the next treatment phase. Neutrophils have to be at least 0.75…they were 0.17 last Tuesday. So wish us big numbers (blood counts not temps!) so we can get back to our regularly-scheduled programming...and kick some cancer butt!

We're home!

Yep, all 3 of us under the same roof again. Hayden was almost giddy just to do the usual things around the house....so were mom and dad. We had a great afternoon. His counts are still low so no public outings (which is fine by him) but he can go to school after clinic tomorrow, if he's up to it.

This is, so far, a minor set-back in his treatment plan. We can't start the next phase, called interim maintenance, until his counts are back up. This may take some time - which isn't bad, it just extends the duration of treatment. I remember telling him that if he takes his meds, cooperates through all of the procedures, eats well, etc., that he'll get through this quicker. Well, he did all of that...but some things are out of our hands.

The other set-back is in his strength and coordination - 11 days in a hospital bed is bad for him. He did laps around the nursing station and earned a fair bit of shwag from the sticker drawer and even the treasure chest (most of if funded by yours truly....as if they'd stock B.J. Penn stickers...). But it's just not the same as day-to-day activity, like climbing stairs, walking around the house, and going to school. So we have more exercises and stretches to get him back where we left off. And homework...lots of that to do too.

Ready for some good news? Here ya go: No more barthing! But wait...there's more. Hayden's eating like a horse. He's pretty selective and gets wicked cravings, but man can he go. It's great. We can alreay see that he's starting to fill out a bit. It's mostly due to the olanzapine (as opposed to my great cooking) but it's all good.

Thanks to everyone who came by the hospital, sent goodies, and left messages. We truly appreciate your support. And I know there are many more who are following this blog and wishing good things for us - thanks!