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.