Your pledge to the Caring for Kids radiothon will triple

Well, Friday's clinic appointment didn't amount to much. Hayden's neutrophil count is still too low to continue treatment (in fact it went down!) so back we go tomorrow for another blood test. In other news...

The QX104 Caring for Kids Radiothon starts this week. Please consider making a donation to raise money for the Children's Hospital - you can triple the amount by indicating that it's part of the EISI Corporate Matching Program. Every dollar you pledge will be matched by my company, EISI, and our CEO, Mark Evans. The radiothon offically kicks off on Thursday, April 30 but phone lines opened today.

You can make a pledge by calling 953-KIDS or 866-953-5437; or on the world wide web at https://www.goodbear.mb.ca/radiothon_donation.aspx. Please be sure to indicate that your donation is part of a Corporate Matching Program and enter EISI as the Organization name.

We have great programs and facilities for sick kids in Winnipeg – which is so important in attracting top medical professionals. Since Hayden’s diagnosis, Tom and I have met many inspiring children who are bravely battling serious illnesses. Let’s give them every possible opportunity to succeed.

Thank you!

PS: Please don’t forget to indicate that your donation is part of the EISI Corporate Matching program.

Back to the clinic on Friday

Hayden returns to the clinic on Friday to see where his blood counts are at. If neutrophils are at least .5, he'll get 2 chemo meds at the clinic through his Iron Man port and 1 lumbar puncture at the Pediatric Day Unit (PDU). Stay tuned...

2 out of 3

Hayden's neutrophils are still not high enough to continue with the regular treatment path but he did get 2 out of 3 chemo drugs during his Friday clinic visit. We were surprised because we were told that the thigh injections would be done on Saturday and only if his blood counts were good...and when I say surprise, I don't mean the happy-birthday-here's-a-present kind of surprise.

H was upset about the thigh injections. He can get pretty worked up about these ones but the anticipation is much worse than the needle. However, Nurse Wanda is very patient and she gave him plenty of time to 'get the feeling'. This is part of Hayden's poke routine - he asks them to get everything ready, then Mom or Dad covers his eyes, and he gets the feeling by concentrating on better thoughts. Basically, he goes to a happy place and the needle goes in with no problems (a topical anesthetic freezes the skin). This has served him well during needle pokes and tests (i.e., bone scans, MRIs, x-rays) and the routine gives him comfort...especially when he was getting needles from unfamiliar home care nurses.

So now what? Well, we're not sure yet. Dr. Cham is seeing Hayden while Dr. Stoffman is on vacation. She says the low counts may not be related to the chemo (maybe fighting an infection?) or it may be that he's already reached the maximum methotrexate dosage (in the capizzi method he gets escalating doses until his neturophils go down).

We're back at the hospital on Friday...

Return to Neutropenia

If Neutropenia were a town…

…a giant Purell pump would rain down sanitizer every day

…the streets would be patrolled by anti-germ agents on the look-out for sneezers, kissers, and touchers

…visitors would be hosed down, masked, and gowned

…everything would be disposable

…we’d rent an apartment

Off to a non-start

And we’re off to NON-start (almost) in the Interim Maintenance phase. Tuesday’s blood test revealed that our dear boy is, once again, neutropenic. Hayden’s neutrophils were at 0.35 and need to be at least .5 to keep going. So he didn’t get his chemo and we’re back to the clinic tomorrow for another blood test. If we’re good to go, he’ll get two chemo drugs through his Iron Man port and we’ll hit the PDU on Saturday for thigh injections. Otherwise, he gets one chemo drug tomorrow and we wait until next Tuesday for another test.

Ya think we’d stop being surprised by these delays. We’re just so happy to make progress that it doesn’t even occur to us that we’d get ANOTHER delay. Oh well…here’s what we have learned about fluctuating blood counts: we can’t control it; being anxious about it doesn’t make a difference; and things could be a whole lot worse. Hayden is in great spirits and generally feeling well. His appetite is almost normal and he hasn’t felt barthy since his last chemo treatment. If fact, he’s gaining a bit of an independent streak.

Hayden now prefers to go solo into the treatment room at the clinic when he gets blood tests (I spy outside the door). He wants to start taking the school bus again (I call shot gun!). And, he’s talking about going to a kids’ CancerCare camp (I’m pricing out camo gear). Hopefully this is just a phase…

And now for the biggest and bestest news of the day: Hayden went back to tae kwon do. It was kind of a last minute thing but he was absolutely sure that he wanted to go. It was physically challenging for him and he really struggled at times, but he never stopped trying. The determined look on his face took me back to his first hospital stay (shortly after he was diagnosed) when his leg problems started. He mustered every bit of will to move his leg and even talked himself through the pain. I knew right then that he was a warrior and no matter how hard things got, he would never quit. He is an inspiration. We are so incredibly proud of him.

Just like riding a bike

What is this...spring? I really, really, really hope so.

We had a blast on Thursday when we rented a kids' theme room at the CanadInns and hung out at the pool/water slides. Hayden and cousin Chandler really enjoyed it - great way to kick off the long weekend. When we got home, we pulled out H's old (smaller!) bike to see how he would do. He wore the usual precautionary helmet, along with elbow pads, knee pads, and cycling gloves (not kidding) because we were worried that his lack of balance and strength might send him into the ditch (should've had him in a life jacket!). But he did great and made it further than we expected so we'll be taking the new orange bike on it's maiden voyage today.

Yesterday's 2/3-triathlon (swimming and cycling) really sucked out H so, after a 2-hour nap, we spent a quiet night on the couch watching Survivior. For the rest of the weekend, we're looking forward to family dinners and, of course, lots of Easter Bunny droppings.

Hayden's appetite is returning but his keen (maybe distorted?) sense of taste and smell really make eating an adventure for all of us. But we're finding enough options to keep him looking good. Plus, his hair is coming back in! I'll try to upload some pics this weekend.

Happy Easter from all of us!

Easy capizzi

Friday's clinic appointment went well. Hayden's blood counts are good so no need to limit public outings (yay!). Hopefully, this will be the case for most of this treatment phase because Hayden is getting methotrexate (a cancer-fighting drug that's important in leukemia treatment) in escalating doses, every 10 days. This is called the capizzi method and it's part of the study to test if it's better than the high-dose method, which requires hospitalization. Both ways of giving methotrexate are proven to be effective in treating ALL so we were happy to be randomized into the 'easy capizzi' path of the study. For the first time since November 19, we will go an entire week without a medical appointment.

So his blood counts are good but Hayden's weight is down a little...not surpirsing because he really doesn't have much of an appetite right now. We're keeping a close eye on that to see if we need to re-introduce appetite-enhancing drugs. Also, his legs are again giving out on him so we need to keep on the physio exercises to make sure he doesn't lose too much strength. Easy capizzi, huh?

Next appointment - April 14....

Mostly sunny skies with scattered barthiness

After a bit of a rocky start to the IM treatment phase, things are leveling out. Hayden was not feeling too well when he first re-started chemo on Tuesday (IV) and Wednesday (spinal and thigh injections). He had barthy bouts (even in the middle of the night), which lasted until Sunday. By Monday though he was feeling better and ready to enjoy spring break. And, seeing as his blood counts finally rebounded, he was able to go out to public places…shopping, movies, and other 'everyday' stuff that we haven't been able to do in a long time. His appetite is on the low side of normal, but he’s looking good and in great spirits.

Spring Break Highlights

A NEW BIKE!!!
- Tom scoured the city for an orange bike (with gears! and a front shock!) so when he found it, we all went down to Canadian Tire to pick it up. Hayden was so excited!

Spending time with Grandma
- Hayden’s Grandmas took turns spoiling him and he totally loved it.

More shopping
- Toys r Us, Chapters, and even Costco…he made out like a bandit.

We're back at the clinic tomorrow for blood tests and an Iron Man shot of chemo. I'll post results soon...