6 months today

Hard to imagine, but things have gotten pretty routine. I revisited some of the earlier posts in this blog - memories of heart-breaking moments and hard-won victories. There's no doubt that Hayden is much more mature and grounded - I think we all are (my grey hair is a testament). Now we're now nearing the end of the interim maintenance phase, which was the easiest one so far. Hayden was neutropenic through most of it, but he felt well, had good energy, and his spirits were high...can't ask for too much more than that.

So we're back at the clinic on June 2 to see if his counts are high enough to start the Delayed Intensification (DI) phase. If so, things get underway on June 3. If not, we wait until June 9 to do another blood test. As always, we're anxious to keep things moving along so we can hit maintenance (aka cruise control) sooner, rather than later. The next phase is scheduled to go 2 months. So cruising in August? Who knows...

This next DI phase likely won't be good times. Remember the roid rage that turned my sweet pea into a mean-spirited, puke-pan-flinging monster? Well the steroids make a reappearance for 2 separate 7-day stretches in this next phase. The doctor assures me that DI won't be as bad as that induction phase, but I'm phsyching myself for an onslaught. The difference is that this time, we know what to expect. It was a very different story when H was first diagnosed - he felt horrible, the chemo side-effects were new to us, he was in the hospital, and we were all shell-shocked...thinking that we had 3 years of that ahead of us! Oh well...if nothing else, the steroids will make for some interesting posts.

If you're a Survivor fan, you might know that Hayden's guy JT won the whole she-bang...and put a cool $75 in his pocket. Woo-hoo! Now if we could just go to a damn store to spend it.

And, a Hayden story to end with....He's decided what he wants to be when he grows up. When he announced this to me and warned that I may not like it because it's dangerous, I suspected that he was going to say a firefighter like Uncle Ray. But nooooo....he says he wants to be a vet. I know what you're thinking because I thought it too. Being a vet isn't dangerous...what a relief! Then he says, "No mommy, a vet like Rambo." That would be vetERAN....oiyyyy. But no hurry, he's going to be a kickboxer first. And that, my friends, is the real danger of neutropenia - TOO MANY MOVIES!

We did good

Thank you for donating during the QX104 radiothon! Through the EISI matching gift program, we raised $98,700 for the Children’s Hospital. Overall, the raidiothon brought in about $600,000. Awesome!

As you may have guessed, my boss Mark Evans is a big supporter of the Children’s Hospital but his generosity does not end there. He also arranged a special gift for Hayden – a Wayne Gretzky autographed Oiler’s jersey. I sensed that my son did not fully appreciate the magnitude of this gift when he responded, “Cool. What’s your dogs’ names?” He did, however, notice everyone’s jaws drop when he showed it off at home….I think he gets it now. Mark recently had a run-in with cancer so he and Hayden are kindred spirits.

And while we’re talking about great gifts, here’s a picture of Bob presenting Hayden with a very cool bike. It’s actually double cool – the first reason is obvious, it is one sweet ride; the second reason is because it once belonged to Cody and he’s a cool kid. It’s too much bike for H right now, but he loves to sit on it in the garage.

It sounds funny to say that Hayden is a lucky kid but so many people go out of their way to make him feel that way…he thinks he is. And after everything he’s been through (not to mention struggles yet to come), good for him.

Some catching up to do...

It's been a while...my apologies to everyone who regularly checks-in for updates and worried when we were silent. Things have been busy but Hayden's doing very well.

His last appointment was Tuesday and his blood counts (specifically neutrophils) were finally high enough to continue with all of the chemo but he is STILL neutropenic - which means no public appearances. So much for 'easy capizzi'...I guess this treatment round is relatively easy but we didn't expect that he would be neutropenic for so long. Hayden was supposed to get escalating doses of methotrexate but his counts dropped almost right out of the gate. But, it's not a bad thing. Dr. Stoffman explains that if we're getting the innocent bystanders (that's the healthy blood cells), we're definitely doing a number on the bad guys (that's the blasts / leukemic cells). And we're not loading him up with high doses, which means less side-effects.

Hayden's attending full school days when he doesn't have appointments and goes to the occassional tae kwon do class. His spirits are high, his hair is coming back, but his appetite is hit and miss. We can't go to the movies or be around sick friends/family, but now that the weather's warmer, we're getting out a lot more. As much as possible, we're trying to enjoy this treatment round because the next one may be...shall we say....less fun.

Mother's Day was great! We spent some time at home (breakfast in bed and a gift hunt!) then later with family. The previous Sunday was the Winnipeg Police Service 1/2 marathon to support the Canadian Cancer Society. We went and cheered on Christa, who was running in H's honour. He was there to hi-5 her just before the finish line. She did great and raised about $2k! Thank you to Christa and everyone who sponsored her.

As well, we raised a lot of $$ during the QX104 radiothon for the Children's Hospital, which so many of you supported. I don't yet have totals for the EISI matching gift donation but hopefully I can post them soon. Once again, thank you for donating, following Hayden's story, and reaching out in so many ways. It's definitely comforting for Hayden to know that we are not alone in this battle. We don't always respond, but we read every email, Facebook message, card, and everything else. H has definitely gained an appreciation for helping others, the way that he has been helped.

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