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 31, 2009
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)...
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.
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
Sunday, November 29, 2009
Winner!
Hayden got a little spending $ for his big trip - he won $97 at a Grey Cup party! After busting me on a swear, he turned around and 'invested' the payment in a ticket. Nice...VLTs are next.
This weekend went a little smoother than last - we were at ER last Saturday a.m. with a hot Hayden. We thought the fever might be a reaction to the H1N1 booster that he got the day before, but that's not a typical side-effect so we had to take him in. They prescribed the tamiflu anti-virus as a precaution, which he took for 5 days...and hated! The irony of the whole thing is that Friday was the first time since Hayden's been sick that he had a sleepover. It was a big step...not for him, for me. Anyway, the fever subsided, he's feeling fine, and he will never leave his mama again. Kidding! Just kidding...sheesh.
Moving on...Hayden's big return to tae-kwon-do didn't happen. He is just not comfortable re- joining his class...even though he is now able to keep up better than ever. I suspect though that 'keeping up' is not what he wants to do. But he did have a good first class at archery this weekend so he's getting back into the swing of things in some areas.
And finally, you didn't think I would end this post without mentioning neutrophils, did you? Well, they're high. That's right...around 3 when we took him to the hospital. So not sure if Dr. Stoffman will nudge up his chemo doses but we'll find out on Tuesday. Then, on Wednesday, Hayden has his monthly lumbar puncture. His response today when he found out he's going this week: Yay!
Go figure...
This weekend went a little smoother than last - we were at ER last Saturday a.m. with a hot Hayden. We thought the fever might be a reaction to the H1N1 booster that he got the day before, but that's not a typical side-effect so we had to take him in. They prescribed the tamiflu anti-virus as a precaution, which he took for 5 days...and hated! The irony of the whole thing is that Friday was the first time since Hayden's been sick that he had a sleepover. It was a big step...not for him, for me. Anyway, the fever subsided, he's feeling fine, and he will never leave his mama again. Kidding! Just kidding...sheesh.
Moving on...Hayden's big return to tae-kwon-do didn't happen. He is just not comfortable re- joining his class...even though he is now able to keep up better than ever. I suspect though that 'keeping up' is not what he wants to do. But he did have a good first class at archery this weekend so he's getting back into the swing of things in some areas.
And finally, you didn't think I would end this post without mentioning neutrophils, did you? Well, they're high. That's right...around 3 when we took him to the hospital. So not sure if Dr. Stoffman will nudge up his chemo doses but we'll find out on Tuesday. Then, on Wednesday, Hayden has his monthly lumbar puncture. His response today when he found out he's going this week: Yay!
Go figure...
Tuesday, November 17, 2009
In training
Hayden is doing all that he can to prepare to take on Darth Vader in Florida. He practiced his lightsaber moves outside last weekend and on the previous Wednesday during the Remembrance Day off from school - probably put in 45 minutes at a time. Plus he's back at the gym. He's in private lessons right now to catch up with the rest of his tae kwon do class, which he'll likely rejoin next week. Yes, he's feeling good...probably due in no small part to normal blood counts.
Today's blood test put Hayden's neutrophil count at 1.88 - woo hoo! So we're inching up one of his chemo meds (mercaptopurine), from 50% to 75%. It's the other chemo med (methotrexate) that drops his counts so hopefully this increase won't be a problem. Hayden returns to the CancerCare clinic on Friday for his second H1N1 shot...then we'll all be fully vaccinated up.
For those who are keeping track, we are approaching the 1-year mark in our battle against cancer. We took H to the doctor on Monday, November 17. Technically, the 18th is the day Hayden was diagnosed because it's when his blood work was done (coincidentally by the son of a family friend), but we got the call to come in on November 19th. We're unsure about how to celebrate this milestone...or if we should. Part of me thinks 'hell ya!' because we have come so far and are currently in a good place. The other part is...shall we say...cautiously optimistic. In the end, I think it's more important to celebrate moments. For example, I almost tear up when I see him bounce down the driveway toward the bus stop because I remember the months when it was a real struggle for him. I worried every morning about what the day might hold for him at school. And those were the good times when he was well enough to climb the school bus stairs.
There are daily reminders of little victories...I celebrate them often.
Today's blood test put Hayden's neutrophil count at 1.88 - woo hoo! So we're inching up one of his chemo meds (mercaptopurine), from 50% to 75%. It's the other chemo med (methotrexate) that drops his counts so hopefully this increase won't be a problem. Hayden returns to the CancerCare clinic on Friday for his second H1N1 shot...then we'll all be fully vaccinated up.
For those who are keeping track, we are approaching the 1-year mark in our battle against cancer. We took H to the doctor on Monday, November 17. Technically, the 18th is the day Hayden was diagnosed because it's when his blood work was done (coincidentally by the son of a family friend), but we got the call to come in on November 19th. We're unsure about how to celebrate this milestone...or if we should. Part of me thinks 'hell ya!' because we have come so far and are currently in a good place. The other part is...shall we say...cautiously optimistic. In the end, I think it's more important to celebrate moments. For example, I almost tear up when I see him bounce down the driveway toward the bus stop because I remember the months when it was a real struggle for him. I worried every morning about what the day might hold for him at school. And those were the good times when he was well enough to climb the school bus stairs.
There are daily reminders of little victories...I celebrate them often.
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