Thursday, December 31, 2009

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!

Thursday, December 24, 2009

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!

Sunday, December 20, 2009

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)...

Sunday, December 6, 2009

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.

Tuesday, December 1, 2009

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!