I'm thinking of a #...

...between 1 and 1.5.

That's the ideal neutrophil range for Hayden. He's at 1.4. Yay! Awesome because: 1) he has an immune system; 2) we don't have to adjust his chemo doses; and 3) we don't have to go to clinic next week.

Hayden went to tae-kwon-do class on Monday. It must be a day to hit the restart button because it was exactly a year ago that he returned to grade 2. I know that because I went back and read old blogs - yikes. People used to say, 'I don't know how you do it' and I remember thinking how the complete lack of choice rendered the remark absolutely pointless. But, looking back...I don't know how we did it. It was a nightmare for all of us - many of you readers and certainly all of Hayden's family. I'm not going to say that we're out of the woods yet, but there's no denying that things are immeasurably better than a year ago.

And now the young lad wants to play hockey. Maybe his buddy Dane can can give him some pointers. Dane was diagnosed with leukemia shortly after Hayden and he's playing 8A1 hockey...most impressive. So, we got Hayden new skates and we've been out at St. Vital arena with Jesse and family once so far (also friends through CancerCare) and we're hitting the rink again this Sunday. Hayden didn't skate at all last year so he's got some catching up to do. But I'd say his mobility is at about 90% so the rest will likely come with a little work. And he's still in archery.

As the archer dudes (and Grandpa) say...until next time, tight lines and straight shooting.

PS: my sincerest apologies to all of the snowmobilers (which now includes my son) for wishing for warm weather...who knew? Even deeper apologies for loving this heat wave.

New Moon

Just got back from seeing New Moon - loved it! Hayden and I have been reading the Twilight series books (OK, I'm reading, he's listening) so I surprised him with a movie date. As you might have guessed, his blood counts are up so public outings are finally allowed.

You might find it odd that I would read these books to an 8-year-old...it's kind of shocking to me too. When the first movie came out on DVD, I thought it was inappropriate and didn't allow him to see it but, of course, that only made it more desirable to Hayden. He, along with the support of most of his cousins, eventually wore me down and he became a big fan. Then I bought the book as a way to pass time in the hospital, and it worked exceptionally well. The reading seemed to soothe him when he was feeling crappy and the story took him away from whatever was going on at the time. He begged for more pages and I read aloud until my voice cracked. Plus, I censored as I read so we tore through the first 3 books. The movies present a censorship challenge but I must say, I couldn't have enjoyed it more. Being in the theater with him, watching him see the familiar story unfold, putting a visual to months of reading...it was great. I suspect, though, that these books will always conjur bittersweet memories for me.

We'll be back at the clinic on Tuesday for another blood test. Dr. Stoffman wants to see if last week's steroid pulse pushed up his counts or if he's really making neutrophils on his own free will. Hopefully his ANC is between 1 and 1.5 so we can stop adjusting the chemo doses and get on with life with an immune system and without weekly clinic visits.

If the weather warms up, Hayden will be snowmobiling around the yard this weekend. Did I mention he got a Snow Scoot for Christmas? He loves it. I'm sure we're all hoping the weatherman is right.

Turn the page

It's New Years Eve! Woo-hoo!! Time to flip the last page on the calender and start fresh. Bye-bye 2009.

It's probably obvious but I'll say it anyway...I can't wait to put this year behind us. Here's looking forward to an awesome 2010 for all of us.

Cheers!

And to all, a good night

It’s Christmas Eve. Hayden rushed off to bed, so excited about Santa's impending arrival. A wonderful time, while sugar plumbs dance, to send our thanks to all you who follow this blog and keep us in your thoughts and prayers. It means a lot to us. I can't imagine going through this without the incredible support of family and friends.

I think back to last year when we were a little more than a month into Hayden’s treatment. We were so happy that he could be home for Christmas. There was no getting around the fact, though, that he was a very sick little boy. Fast forward a year and he is active, alert, and happy. The magic of Christmas is even more special. We are very thankful.

Our thoughts, during the holiday season, are also with the McBain family. Kendra, a remarkable young woman, recently lost her 3-year battle against a rare form of cancer. But she strongly believed that quality of life is much more important than quantity. Her courage, kindness, and spirit inspired me. You can be inspired by Kendra McBain here: http://www.winnipegfreepress.com/local/kendra-mcbain-was-a-hero-in-the-purest-sense-of-the-word-80048582.html.

Merry Christmas from all of us!

The real deal roller coaster

We're back! It was, without a doubt, the vacation of a lifetime. Hayden was feeling exceptionally well and happy as heck (who wouldn't be!). The highlight of the trip? ROLLER COASTERS!!! He is the coaster kid - nothing is scary or hairy enough for him. And, seeing as we didn't wait in lines, he did his favourite rides several times (also loved The Simpsons) .

The Give Kids The World village is amazing. It's a fantasy land designed exclusively for kids on their wish trips. Our villa, the facilities, treats, gifts, character visits...all of it was more than we ever expected. We would have loved to spend more time there during the day but, with so many theme parks to visit, we were often cruising around. Some pics...

Hayden at the Jedi Training Camp at Hollywood Studios


An awestruck Hayden meeting his hero Spider-Man at Universal Studios


Another favourite character (he puts the SB theme song in his head to take his mind of things like needles)


Holding up the Epcot ball...


Feeding the dolphins at SeaWorld


Pool areas at Give Kids The World


Unfortunately, we discovered on Friday that H's counts are down again...yep, he's neutropenic (sigh). Dr. Stoffman feels that it's because he had a virus, which explains the ear ache earlier this week. We took Hayden to his pediatrician...no infection, no fever so we attributed it to being in the pool hours before our flight home. He was feeling a bit crummy this morning but seems fine now as he plays with cousin Chandler. Oh well, just need to take the usual precautions.

Season final of Survivor tonight and we're still in the running (I promised to split my winnings with H if Brett pulls through)...

Roller coaster

You'd think I'm referring to the kind that we'll soon see in Orlando but nope, this is a roller coaster of the emotional variety. Hayden's 5-day pulse of steroids started on Wednesday so by Friday he was up and down, all over the place. One minute he's bouncing off the walls, the next he's crying because he doesn't want rice with supper. Video games become an exercise in frustration, wii-motes nearly become projectiles.

The roid rage, which isn't nearly as bad as the longer stretches of dex that we did in the induction phase, still catches us a little off-guard. Once we tune in though, Hayden's pretty good at recognizing the swings and managing his emotions...and getting better all the time. On a positive note, the prednasone increases his appetite. It can be a real challenge to find things he will eat because his sense of taste is distorted from the chemo (and changing all the time) but, on steroids, he can put some good quantities down.

Maybe instead of getting Mickey Mouse ears in Disney, we'll get him devil horns for his 5-day stretches of steroids...that way, everyone will be warned.

Looking in your big pink eyes

A quick update...

• Hayden has pink eye! Actually, pink eyes. So in addition to the various pills he swallows each day, we've added 2 big horse pills (and we do a nice whinney when it's time to take them)

• Neutrophils are still high (just over 2 - yay!) so one of his chemo meds was slightly increased to get him between 1 and 1.5

• Tomorrow is a trip to the pdu for a lumbar puncture...if a methotrexate pill a day keeps the cancer away, these monthly shots should really send those bad cells packing
  

• He's getting dangerously close to his first hair cut...or maybe just a trim around the ears

Hayden went to a birthday party on Monday evening and several parents remarked about how good he looks. He does! Makes me recall how far we've come! Once again...yay!