Life is like a box of blood cells....

...sometimes you get neutrophils. Wait - I should start at the beginning.

The answers to the questions I raised last week...

Hayden's neutrophil count dropped last week because he just ended a steroid run (roids push up the counts). So .55 was...high? OK, then they dropped to .1, but it was not a concern to his doctor.

He has indeed seen kids before with scardy-cat blood cells (bolt at the first sign of chemo). Hayden is very sensitive to methotrexate, which is one of the chemo drugs that we now give him orally at home.

All of us will get the flu shots. We tried today and were turned away at about 5:45 because they had already reached capacity. We'll try again tomorrow (note to anyone who is not high risk but going early for their shots - get the hell out!).

One other question that I raised with Dr. Stoffman but didn't include in last week's post was about his increasingly laboured gait. He figured it was due to prolonged neutropenia...and it looks like he was right because (spoiler alert!) his walking and running is already better.

And now for the good news...Hayden lifted his head above the neutropenia clouds. Too funny, when I heard that his ANC was at 2.15, I panicked that it was too high! When did I get so neurotic? Tom talked me down...turns out normal is 1.5 to 8.5 for kids. But wait, there's more good news...we've restarted Hayden's chemo doses at 50%. We all knew that 100% was too high for him but, because he's part of an oncology study, the doctors have to follow a strict protocol. This protocol states that, when his counts recover, he is re-started at 100%. However, Dr. Stoffman contacted the researchers and we are OK'd to re-start at 50%. You know what this means, hey? Hayden's back on track to having an immune system for his 'wish trip' to the Jedi Training Academy.

Today we went to WalMart and McDonald's (because we can!) and Hayden spent the $$ he received from a special fundraiser party put on by Angie Zubrin and gang. A big thank you to all who participated...he bought a much-desired DSi (hand-held video game contraption...and no, we won't be putting Grand Theft Auto on it!).

I definitely need to post some new pics soon. OMG - Hayden looks great. The prolonged period of low blood counts really didn't get him down too much, but he's even better now. Sooooo happy...all of us.

Things I don't understand...

This could indeed be a long list but I'll limit it to Hayden's treatment...

1. How the hell could his neutrophils drop again?

2. Is it good or bad that he's not getting chemo right now?

3. Should he get a flu shot?

I think I just wrote my email to Dr. Stoffman.

Gaining some ground

Wow...busy week. While I was out of town on business, Tom took Hayden back to the clinic to see if his blood counts were high enough to go back on chemo. Still no...but his neutrophils are going in the right direction (whew!). He's at .55 now so he's back in school and we're back at the clinic on Tuesday for another blood test. There's no doubt that we need to scale back chemo levels...but the doctors follow a protocol that says he must start at 100%. The thing is that his wish trip from the Rainbow Society is quickly approaching so we're eager to get his immune system in gear. His weight, on the other hand, is good. He finally surpassed his pre-cancer weight...by about 1/2 a lb. Maybe his new hair put him over the top!

The Kids Fishing for a Cure fundraiser on Friday night was a big success. Thanks to everyone who came out to support this event!!! Great turnout, plus nursing staff from the CK5 hospital ward were there to accept gifts for their patients, including laptops and much-need parking funds for families. Hopefully, we won't be back on the ward but many of the families we know through the CancerCare clinic will be, and we're all too familiar with how that goes.

Speaking of which, we'll be attending a fundraiser this week for Nick Cooper - a 13-year old who was diagnosed with ALL while his family was vacationing in Florida last Christmas. Unfortunately, he suffered even worse side-effects than Hayden from the vincristine (causes the mobility issues). Plus, Nick recently underwent a transplant procedure - tough road to travel but the hopes of getting back on skates keep him motivated.

The perfect storm

We've got the perfect storm brewing here...Hayden's neutrophil count is extremely low - it's at 0.04 so his immune system is extremely low. If it bottoms out, he will likely spike a fever. Plus, he started coughing in his sleep. So, we're on high alert but hoping to avoid another hospital stay.

Tomorrow's lumbar puncture is a go but we're still paused on the home meds (oral chemo). It's not the dr.'s orders but we're keeping him home from school until next Tuesday - that's his next blood test.

To look at him, you would have no idea that anything's out of whack. He looks great and he's happy...nothing a little home-schooling won't cure.

Among angels

Last weekend, we went to a family camp in Portage la Prairie that's put on by the Candlelighters Association (a support group for families with children who have cancer). It was a great event. The best part for me was seeing the kids having fun, building friendships, and being kids. The pool was crazy and wonderful - tots to teenagers. Every one of them (siblings included) have suffered through so much and I've probably seen most of them at their low points - so to be with them in this environment was good for the soul (thus the blog title).

For the parents, it's an opportunity to share with others who have walked in our shoes...or just listen to people who are facing similar (in many cases worse) challenges. My heart goes out to all of the families who are battling so hard with no end in sight. Leukemia, and particularly ALL, has a defined protocol - it's treatable. Others are blindly forging ahead and praying for the best...too many have relapsed (our unspeakable fear). The unknown is terrifying...but I left feeling oddly grateful for leukemia (messed up, huh?).

So for all these families and many more who couldn't make it, I want to help the volunteers that organize these amazing events...where bald, frail, little boys with battle scars don't stand out. I hope you'll help me. If you're not doing anything on Friday, Oct. 16, please come out to the Bud, Spud, and Steak at the Tijuana Yacht Club, in support of Kids Fishing For a Cure. Call me for tickets - $15 each - at home (668-5989), work (943-3474 x3121), or on my cell (333-7187). Tom's cell # is 999-4152. If you'd like to donate something for the silent auction, that's great too. And hey, if you can't make it, don't sweat it...there will be other opportunities.

Hayden's due back at the clinic tomorrow to see the doctor - his Day 29 appointment. If his counts have rebounded, they'll likely back-off his oral, at-home chemo and he will continue with the lumbar puncture and IV chemo on Wednesday at the PDU. Otherwise, we may be back in wait-and-see mode. As always, I'll keep you posted.

Back to neutropenia

You might have guessed it...today's blood test revealed that Hayden's neutrophil count (a type of infection-fighting white blood cell) is very low. He's at 0.37 and an optimum range is between 1 and 1.5.

I had to laugh when Super Oncology Nurse Cathy said this is normal for the beginning of maintenance...why would this phase be any different?! So, for now, we'll stop the oral chemo that he gets at home - a nice break from pills that need to be taken on an empty stomach. Next Tuesday is his Day 29 appointment so he'll get another finger poke blood test (these are much easier, thanks to emla cream) and we'll talk to the doctor about whether his chemo dosage should be adjusted. Thing is, he's had a bit of a cold so they say that may be throwing things out of whack too...but I seriously doubt that. Hayden's white blood cells pack up and leave town at the first sight of chemo...we have a bit of track record on this. He also has a PDU appointment next week for a lumbar puncture and a shot of vincristine.

Last Saturday's Bomber game was a blast! When they called his name, Hayden blasted out across the field toward Buzz & Boomer with an ear-to-freaking-ear grin! All by himself, in front of about 20,000 people. It was awesome! I think Buzz got a little worried though...Hayden's running has come a long way but it's still laborious so the mascot met him part way and walked with him. He looked great in the jersey they gave him...plus he got a big foam finger. And we won! A good night, indeed.

Looking ahead to Friday, Oct. 16, Tom and I are planning to attend a Bud, Spud & Steak fundraiser at the Tijuana Yacht Club. Long-term blog followers may remember the Kids Fishing for a Cure event last spring (see June 8 post). This fundraiser is for the organization that hosts that derby and supports children's programs at CancerCare. If you'd like to join us for a night out or donate a prize for the silent auction, please contact one of the guys below...thanks!

Dave Korstrom 981.8632
OR
Jim Bais 667.2063

Hello sunshine

I know what you're thinking - now that Hayden's hit the maintenance phase, there's nothing to report, and the blogs are over. Not true, my friends. In fact, quite the contrary...we have lots of great things to write about. So, to all of the people who shed a tear while reading about Hayden's hard-won battles, this one's for you!

Let's start with last weekend's dragon boat races. Our long-time friend Trent (notice I didn't say old) took team fund raising to the extreme. To encourage people to dig deep, he promised to shave body parts when they hit their targets. And it worked - they raised more than $12K for cancer research! First went a full head of hair, then a more-than-full mustache. And because I'm never above saying 'I told ya so', I have to point out that I practically begged him to loose the facial hair about 20 years ago. He looks great! BTW - their 3-year total is well over $34K!!! They is good folk!

In a strange twist of fate, Pirates of Plastic (Trent works at Melet Platics) picked up Auntie Nadeen as a spare. We came out on Sunday to cheer them on for the final race! Not to be outdone, Auntie Mel learned to suck in her nostrils in an MJ pose (see pics below).

Hayden started grade 3 with no problems. He has a great group of friends and cousin Chandler is in his class, so he feels good about it. He's in a 2/3 split this year - seeing as most of the kids were not in his class last year, we co-presented an 'About Childhood Leukemia' talk to address some of the questions that kids ask...and, more importantly, the ones they don't. Hayden was very comfortable in front of the class so it went really well.

Last Sunday, we finally hosted Hayden's re-scheduled birthday party. We had a family affair back in July but had to delay the party with school buddies because he was neutropenic at that time. He had a blast.

Now that the 5-day pulse of steroids is over (prednasone this time), Hayden has returned to normal. And I don't mean sick-kid normal, I mean good-ole-Hayden normal. I can't tell you what it's like to see him break into an unprovoked smile or even just goof off. He was a real trooper through the tough times - we could almost always get a smile from him. But now he smiles because he's happy, he feels better, and he's Hayden again. Super Nurse Cathy says that even older kids have a hard time describing how they feel when they hit maintenance...it's like a cloud is lifted. All I can say is, 'Hello sunshine'.

Today, Tom took H to the clinic today for a blood test...no dr. appointment, no chemo...just a test. Huh! He was in class by noon. Huh!! Super Nurse Cathy called tonite with his counts - they are border-line so we'll go back next Tuesday for more tests and to see if his meds need to be adjusted. Right now, he's at 100% of the maintenance chemo but it's too early to know if we need to lower it to keep his counts at the optimum level. I'm happy that he's still being closely monitored. You'd think we'd want to run screaming from the clinic but cancer is a tricky foe so it's comforting to keep on top of things.

On a final note, you may see us at Saturday's Bomber game. Hayden is Captain Kid! If all goes well and he doesn't get cold feet, he'll take the field with Buzz and Boomer before the kick-off, then watch on the sidelines at the team comes out. If he does chicken out, you may see Tom sheepishly hold hands with the mascots and wave to the crowd. Either way, it'll be something to see!

Random pics...