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.
Sunday, November 8, 2009
Pictures...finally!
Here's Hayden when he was Captain Kid at the Bomber game in September.
With Buzz and Boomer
Waiting to go on...
On the trampouline...
BumbleBee at the CancerCare Halloween party...
With his new DSi...
With Buzz and Boomer
Waiting to go on...
On the trampouline...
BumbleBee at the CancerCare Halloween party...
With his new DSi...
Tuesday, November 3, 2009
And back down we go
Are you as tired of reading about neutrophils as I am of writing about them? Sheesh...
Today's blood test put Hayden's ANC at .6 - yup, back down below the neutropenia clounds again. But today we started another 5-day pulse of steroids (prednasone) so that will likely push his counts back up. He also got vincristine at the clinic via his Iron Man port so the laxatives enter back into the picture for a bit. Add nightly doses of chemo (methotrexate and mercaptopurine) and the kid is a pill-gobbling machine. On weekends we add septra!
Hayden's at 50% chemo now and we'll try that for a bit. We'll get a brief reprieve from the clinic - no appointments next week (yay!). We were there twice last week but the Friday visit was to attend the Halloween party - it was great. Add that huge bag of candy to the loot he collected on Saturday, and he's got more than he can consume in a year.
I'll once again end this post with a promise to post some pics...are you as tired of hearing that promise as I am of making it? Probably not...I've got way more over-promises in me...hehehehe
PS: Tom and Hayden got their flu shots in before the well ran dry. I, on the other hand, did not....yet.
PPS: The 1-year anniversary looms near...can't stop thinking about it. A freakin'year! Ugh.
Today's blood test put Hayden's ANC at .6 - yup, back down below the neutropenia clounds again. But today we started another 5-day pulse of steroids (prednasone) so that will likely push his counts back up. He also got vincristine at the clinic via his Iron Man port so the laxatives enter back into the picture for a bit. Add nightly doses of chemo (methotrexate and mercaptopurine) and the kid is a pill-gobbling machine. On weekends we add septra!
Hayden's at 50% chemo now and we'll try that for a bit. We'll get a brief reprieve from the clinic - no appointments next week (yay!). We were there twice last week but the Friday visit was to attend the Halloween party - it was great. Add that huge bag of candy to the loot he collected on Saturday, and he's got more than he can consume in a year.
I'll once again end this post with a promise to post some pics...are you as tired of hearing that promise as I am of making it? Probably not...I've got way more over-promises in me...hehehehe
PS: Tom and Hayden got their flu shots in before the well ran dry. I, on the other hand, did not....yet.
PPS: The 1-year anniversary looms near...can't stop thinking about it. A freakin'year! Ugh.
Wednesday, October 28, 2009
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.
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.
Thursday, October 22, 2009
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.
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.
Sunday, October 18, 2009
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 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.
Tuesday, October 6, 2009
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.
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.
Monday, October 5, 2009
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.
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.
Tuesday, September 29, 2009
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
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
Tuesday, September 22, 2009
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...
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...
Tuesday, September 8, 2009
Gimme an M
That's right, we've hit maintenance! Thanks for sending your prayers, positive vibes, neutrochlorians, and neutrophil fairies. Hayden surpassed the .75 minimum with a 1.75 count. Yay!
This 'cruise control' phase kicks off tomorrow with a visit to the PDU for an Iron Man shot of vincristine and a spinal injection of methotrexate. Then we're off the clinic schedule for a few weeks. What will we do with the time? Well, school starts Thursday. And we have to reschedule his birthday party. And he's planning a return to tae kwon do. And...all good stuff!
Now that he's got an immune system, I took him to WalMart to get school runners. Auntie Nadeen was very kind and picked up H's school supplies while we were in the hospital but, as it turned out, we had to go right into the eye of the back-to-school storm today. And, because Hayden has a hard time going more than 20 minutes without food, we stopped at McDonald's. When we got to the front of the line Hayden suddenly blurts out, "Hey, that's me!". I look down and, sure enough, there's my boy's face in one of the photos for a Rainbow Society fundraiser. Now, I'd heard it was in McDonald's (thanks Rick) but it totally slipped my mind and I was caught off guard. As I pick up my jaw, Hayden points at the picture and rips off his cap, yelling to the young girl behind the counter, "Look, it's me! I have cancer!". In fact, he was wearing the same shirt so there was no doubt. I didn't look behind me but I imagine the expressions of everyone mirrored the people behind the counter - they were beaming at him. And, if there was any chance that the entire restaurant didn't hear, Hayden put that to rest by going to get a table (while I fumbled through the rest of our order) then turned back, waived his cap, and shouted, "Don't worry, I'm easy to find - just follow the bald head!". It was quite a performance...I almost thought he was going to get a round of applause. What a turnabout from the boy who refused to race at Grand Prix Amusement Park because he had to take off his hat to put on a helmet!
So this maintenance phase might take a while to level out. The doctors will likely have to adjust meds to keep his neutrophil count at an optimum level (between 1 and 1.5) but it feels like the beginning of the end. We certainly didn't take the shortest path and we still have a long way to go (March 24, 2012 to be exact) but this is a nice milestone to hit.
This 'cruise control' phase kicks off tomorrow with a visit to the PDU for an Iron Man shot of vincristine and a spinal injection of methotrexate. Then we're off the clinic schedule for a few weeks. What will we do with the time? Well, school starts Thursday. And we have to reschedule his birthday party. And he's planning a return to tae kwon do. And...all good stuff!
Now that he's got an immune system, I took him to WalMart to get school runners. Auntie Nadeen was very kind and picked up H's school supplies while we were in the hospital but, as it turned out, we had to go right into the eye of the back-to-school storm today. And, because Hayden has a hard time going more than 20 minutes without food, we stopped at McDonald's. When we got to the front of the line Hayden suddenly blurts out, "Hey, that's me!". I look down and, sure enough, there's my boy's face in one of the photos for a Rainbow Society fundraiser. Now, I'd heard it was in McDonald's (thanks Rick) but it totally slipped my mind and I was caught off guard. As I pick up my jaw, Hayden points at the picture and rips off his cap, yelling to the young girl behind the counter, "Look, it's me! I have cancer!". In fact, he was wearing the same shirt so there was no doubt. I didn't look behind me but I imagine the expressions of everyone mirrored the people behind the counter - they were beaming at him. And, if there was any chance that the entire restaurant didn't hear, Hayden put that to rest by going to get a table (while I fumbled through the rest of our order) then turned back, waived his cap, and shouted, "Don't worry, I'm easy to find - just follow the bald head!". It was quite a performance...I almost thought he was going to get a round of applause. What a turnabout from the boy who refused to race at Grand Prix Amusement Park because he had to take off his hat to put on a helmet!
So this maintenance phase might take a while to level out. The doctors will likely have to adjust meds to keep his neutrophil count at an optimum level (between 1 and 1.5) but it feels like the beginning of the end. We certainly didn't take the shortest path and we still have a long way to go (March 24, 2012 to be exact) but this is a nice milestone to hit.
Thursday, September 3, 2009
Zoomin'
So here’s how Tuesday’s clinic visit went down…
We’re in Dr. Cham’s office because Hayden’s doctor is now on the ward (missed him by ‘that’ much). She enters the room, smiles apologetically, and sits down to talk with Hayden and I.
Dr. Cham: I have Hayden’s blood test results and, unfortunately, he is unable to start maintenance tomorrow.
Cindy: Huh? (confused facial expression)
Dr. Cham: Don’t worry….this is quite common. We often see delays between treatment phases.
Cindy: Huh? (no $h!+ facial expression) You mean he’s close?!
Dr. Cham: Yes, his neutrophil count is .59 and he needs to be at .75 to begin maintenance.
Cindy: That’s awesome! Way to go, dude! (hi-5 Hayden)
Dr. Cham: On Sunday when he was discharged from the hospital, his neutrophil count was only 0.01. That’s a big increase – he may be ready to go next week.
Cindy: That’s great (but secretly doubtful).
Good news, indeed…in more ways than one. If he’s ready to start maintenance (AKA cruise control) next Tuesday, he’ll have a PDU appointment on Wednesday (for a spinal injection). The first full day of grade 3 is Thursday, so he wouldn’t miss a beat. If he’s not ready yet, he’ll likely be on the same maintenance schedule as his very good buddy Dane. Either way, we’re happy campers.
Hayden's feeling great and keeping active - it's the best we've seen him after a hospital stay. And, thanks to the olanzapine, he is eating like a madman. Looking forward to a great long weekend...
Enjoy!
We’re in Dr. Cham’s office because Hayden’s doctor is now on the ward (missed him by ‘that’ much). She enters the room, smiles apologetically, and sits down to talk with Hayden and I.
Dr. Cham: I have Hayden’s blood test results and, unfortunately, he is unable to start maintenance tomorrow.
Cindy: Huh? (confused facial expression)
Dr. Cham: Don’t worry….this is quite common. We often see delays between treatment phases.
Cindy: Huh? (no $h!+ facial expression) You mean he’s close?!
Dr. Cham: Yes, his neutrophil count is .59 and he needs to be at .75 to begin maintenance.
Cindy: That’s awesome! Way to go, dude! (hi-5 Hayden)
Dr. Cham: On Sunday when he was discharged from the hospital, his neutrophil count was only 0.01. That’s a big increase – he may be ready to go next week.
Cindy: That’s great (but secretly doubtful).
Good news, indeed…in more ways than one. If he’s ready to start maintenance (AKA cruise control) next Tuesday, he’ll have a PDU appointment on Wednesday (for a spinal injection). The first full day of grade 3 is Thursday, so he wouldn’t miss a beat. If he’s not ready yet, he’ll likely be on the same maintenance schedule as his very good buddy Dane. Either way, we’re happy campers.
Hayden's feeling great and keeping active - it's the best we've seen him after a hospital stay. And, thanks to the olanzapine, he is eating like a madman. Looking forward to a great long weekend...
Enjoy!
Sunday, August 30, 2009
At last...
Not much of a neutrophil count but enough to spring us from the hospital. We have to be very careful while Hayden is vulnerable to infection, but at least we're home. One casualty along the way though...we lost Sneaky. That's his stuffed leopard that gave him comfort through some tough times in the last 9 months. Hopefully he'll turn up at the hospital.
All in all, he's doing great. Tonight, as I drag my weary butt to bed, I can't help but think about all the parents sleeping (or not) on the make-shift beds at the Childrens Hospital. It may sound weird but we've got it good...at least compared to the many families we know who travel 3 hours each way for treatments or spend weeks at a time in the hospital. It makes our 10-day stint seems minor. Just goes to show you...what?...not sure...but something? mreh.
G'night.
All in all, he's doing great. Tonight, as I drag my weary butt to bed, I can't help but think about all the parents sleeping (or not) on the make-shift beds at the Childrens Hospital. It may sound weird but we've got it good...at least compared to the many families we know who travel 3 hours each way for treatments or spend weeks at a time in the hospital. It makes our 10-day stint seems minor. Just goes to show you...what?...not sure...but something? mreh.
G'night.
Saturday, August 29, 2009
Still waiting...
Yep...neutrophils would be nice, right about now. Looks like we'll be a few more days in the hospital.
Friday, August 28, 2009
Still waiting…
The fevers have subsided but, before we can go home, Hayden needs some neutrophils. Not sure yet what today’s count is but we do know that his overall white blood cell count continues to rise – that’s a good sign. His gums, which were very red and inflamed, look better now too.
Now that Hayden’s feeling better, he’s finding new ways to entertain himself. The fart machine, for example, continues to bring much joy. I wish I could describe the looks on the nurses’ faces when Hayden walked laps around the ward and pretended to drop bombs – then blamed me (he had the remote)! People even poked their heads out of patient rooms to see who was shattering the hospital monotony with unabashed gas (my favourite is the chemo fart). It’s stupid humour, to be sure, but we roared.
Other highlights include: a visit from former Jets players – including Bobby Hull; a spanky new Wii set-up; a new jewelry-making business, a personal magic show; and visits from aunts, uncles, cousins, and grandparents.
Now that Hayden’s feeling better, he’s finding new ways to entertain himself. The fart machine, for example, continues to bring much joy. I wish I could describe the looks on the nurses’ faces when Hayden walked laps around the ward and pretended to drop bombs – then blamed me (he had the remote)! People even poked their heads out of patient rooms to see who was shattering the hospital monotony with unabashed gas (my favourite is the chemo fart). It’s stupid humour, to be sure, but we roared.
Other highlights include: a visit from former Jets players – including Bobby Hull; a spanky new Wii set-up; a new jewelry-making business, a personal magic show; and visits from aunts, uncles, cousins, and grandparents.
Tuesday, August 25, 2009
Things are looking up
Most things are on the way up, including Hayden's spirits and his overall white blood cell count...surely his neutrophils will follow. His temp, on the other hand, is not up - and that's good. The last spike was yesterday evening. He was fine all through the night and so far today. Seeing as all of the blood cultures are coming back negative for infection, we're fairly certain that once his neutrophils return the fevers and swollen gums will subside (btw - he doesn't have thrush).
The olanzapine seems to be helping his appetite and nausea. He has way fewer bouts and is requesting new foods (thanks to Grandma & Grandpa for the 'emergency' chicken noodle soup delivery).
He's keeping busy with some exciting new projects. Details to follow...
The olanzapine seems to be helping his appetite and nausea. He has way fewer bouts and is requesting new foods (thanks to Grandma & Grandpa for the 'emergency' chicken noodle soup delivery).
He's keeping busy with some exciting new projects. Details to follow...
Sunday, August 23, 2009
Understatements....way under
Understatement #1 - Hayden hates being in the hospital...even great nurses and doctors can't change that.
Understatement #2 - Hayden is all out of suck-it-up...just a little grumpy (yikes!).
Understatement #3 - He has major food/barthing issues...he gets a bit anxious when he thinks about food.
Actually, the anxiety isn't just caused by food - oral meds, drinks, anything can get him pretty worked up. He hasn't barthed in days (perhaps many of them, I don't remember) but he says he feels nauseous at the thought of putting anything back. So we're breaking out the olanzapine again. It's a double-duty drug that alleviates anxiety and increases appetite. Dr. Eisenstat says that it's typically used with teenagers who are fighting cancer but Hayden is quite mature and very aware of what's going on. He's the second doctor to say that...sigh...
Understatement # 4 - Cancer sucks...that's a 5-star understatement.
Understatement #2 - Hayden is all out of suck-it-up...just a little grumpy (yikes!).
Understatement #3 - He has major food/barthing issues...he gets a bit anxious when he thinks about food.
Actually, the anxiety isn't just caused by food - oral meds, drinks, anything can get him pretty worked up. He hasn't barthed in days (perhaps many of them, I don't remember) but he says he feels nauseous at the thought of putting anything back. So we're breaking out the olanzapine again. It's a double-duty drug that alleviates anxiety and increases appetite. Dr. Eisenstat says that it's typically used with teenagers who are fighting cancer but Hayden is quite mature and very aware of what's going on. He's the second doctor to say that...sigh...
Understatement # 4 - Cancer sucks...that's a 5-star understatement.
Friday, August 21, 2009
The DI Hangover
Unfortunately, the effects of the stupidly-intense Delayed Intensification (DI) phase continue to linger. Tuesday’s blood test revealed that Hayden’s neutrophil count bottomed out, and his platelets and hemoglobin were low too. The last time this happened, he spiked a fever and we ended up back in the hospital. And here we go again…
Hayden’s temperature started creeping up last night. At about 5 a.m., he came to tell us that he hurt all over – his temp was 38. We called the doctor and he recommended that, seeing as Fridays are clinic days, we should let him sleep and arrive early to the clinic (bonus to not have to go thru the ER). We were planning on going back to the clinic anyway, just to do another blood test and see if he needed a transfusion. So now Hayden is being admitted for at least 48 hours (in Feb it was a very long 11 days). The fever is likely due to the zero neutrophil count but they will watch him closely to ensure that he doesn’t have an infection – that is besides the oral thrush (that may explain the short-lived ear ache on Wednesday night).
So if they goldeye are in fact running out at Nutimik, they will do so with no interruptions from our little fisherman.
Hayden’s temperature started creeping up last night. At about 5 a.m., he came to tell us that he hurt all over – his temp was 38. We called the doctor and he recommended that, seeing as Fridays are clinic days, we should let him sleep and arrive early to the clinic (bonus to not have to go thru the ER). We were planning on going back to the clinic anyway, just to do another blood test and see if he needed a transfusion. So now Hayden is being admitted for at least 48 hours (in Feb it was a very long 11 days). The fever is likely due to the zero neutrophil count but they will watch him closely to ensure that he doesn’t have an infection – that is besides the oral thrush (that may explain the short-lived ear ache on Wednesday night).
So if they goldeye are in fact running out at Nutimik, they will do so with no interruptions from our little fisherman.
Thursday, August 13, 2009
The home stretch
It looked like we were going to sail through the rest of the DI treatment phase but by Wed/Thurs last week, Hayden was feeling pretty rotten. His head was pounding, he started barthing, and on Friday his temperature started to spike (ugh). Unfortunately, we can't give him Tylenol when his neutrophil count is low. Fortunately, Friday is a clinic day so Tom took him in for a blood test. You can imagine our shock when Dr. Stoffman announced that Hayden's neutrophil count was high...really high! On Tuesday, he was neutropenic (ANC = .61). On Friday, he was at 1.33. Seriously, I can count on one hand the times that H WASN'T neutropenic during the last 8+ months so this floored us. We later learned that the same drug that caused all of the horrible flu-like symptoms (ara C / cyterabine), can also spike neutrophil counts. So now he could go out in public, but any scent of food made him barth and sunlight made his head ache. Needless to say, it was a pretty low-key weekend.
Hayden was still feeling crappy on Monday so we kicked off our summer vacation (Tom and I took the week off) with another unscheduled trip to the clinic. Hayden's neutrophil count was through the roof (ANC = 1.94) so Tylenol was still OK. At our regularly-scheduled clinic appointment on Tuesday, Hayden got his very last thigh injections - EVER! This time he took both at once and added another step to his poke routine - at the thumbs-up, I sang the SpongeBob Square Pants theme song. What a relief to never have to stare down those needles again...that was the only thing that got H really worked up. So done.
By Wednesday Hayden was feeling well...and just in time because he was sick of being sick. We kept promising that he's almost through the worst of it, but I don't think he got it. And no wonder...this poor kid has been in suck-it-up mode for so long that, to an 8-year-old, it probably seems never ending. BUT IT IS!
Next week is our last week of the dreaded DI treatment phase. We have an appointment on Tuesday for some run-of-the-mill chemo (hehehehe...yeah, there's such a thing). After that, we wait for his counts to hit the required minimums, then we are in maintenance. The thing with maintenance is that it's easier than any other phase, and it only gets better. The treatments gradually lessen until March 24, 2012 - and then, my friends, it's all over.
PS: we did get out to enjoy the nicest week of the summer (so far). Despite H's very low hemoglobin (affects energy & stamina) we went to Oasis and today he golfed a solid 9 holes. Platelets are also low so he is a walking bruise...but happy to be feeling well.
Hayden was still feeling crappy on Monday so we kicked off our summer vacation (Tom and I took the week off) with another unscheduled trip to the clinic. Hayden's neutrophil count was through the roof (ANC = 1.94) so Tylenol was still OK. At our regularly-scheduled clinic appointment on Tuesday, Hayden got his very last thigh injections - EVER! This time he took both at once and added another step to his poke routine - at the thumbs-up, I sang the SpongeBob Square Pants theme song. What a relief to never have to stare down those needles again...that was the only thing that got H really worked up. So done.
By Wednesday Hayden was feeling well...and just in time because he was sick of being sick. We kept promising that he's almost through the worst of it, but I don't think he got it. And no wonder...this poor kid has been in suck-it-up mode for so long that, to an 8-year-old, it probably seems never ending. BUT IT IS!
Next week is our last week of the dreaded DI treatment phase. We have an appointment on Tuesday for some run-of-the-mill chemo (hehehehe...yeah, there's such a thing). After that, we wait for his counts to hit the required minimums, then we are in maintenance. The thing with maintenance is that it's easier than any other phase, and it only gets better. The treatments gradually lessen until March 24, 2012 - and then, my friends, it's all over.
PS: we did get out to enjoy the nicest week of the summer (so far). Despite H's very low hemoglobin (affects energy & stamina) we went to Oasis and today he golfed a solid 9 holes. Platelets are also low so he is a walking bruise...but happy to be feeling well.
Tuesday, August 4, 2009
1 more week of the tuff stuff
Short but sweet – that best describes Hayden’s high-blood-count stint. He finally saw Transformers and I must say that I enjoyed the boys’ reactions more than the movie. They were so excited when Bumblebee burst onto the screen! Not exactly wholesome entertainment but hey, there was no getting around it. Afterward, they had a blast in the arcade…and the whole thing was repeated a few days later when Hayden and cousin Chandler went to Harry Potter.
Hayden was feeling well so we went to the lake on Saturday. He loved hanging out with his cousins and lake friends – they biked to the store for candy, played ghost tag, and went to the park. We hit the beach on Sunday and the strangest thing happened. The clouds parted and a massive yellow ball glowed in the sky. It emitted a brilliant light that radiated heat...I don’t know how to describe it but it felt great. People from all around came outside to wonder at this miracle, even frolic. Yes, we all frolicked....even Uncle Todd.
Hayden was back at the clinic today for a blood test (ANC = .61) and chemo (cyterabine via Iron Man port), along with an anti-nausea med. Plus we medicate him at home. Tomorrow he’ll be at the PDU for a spinal shot of methotrexate. The week will wind down with thigh injections on Thursday and Friday – then that’s it for the tough stuff. No sweat, huh?
Thursday, July 30, 2009
4 weeks to go!
What's up? Hayden's neutrophil count, that's what! He was .83...up from just .44 last week.
He easily cleared the minimum to restart the Delayed Intensification (DI) treatment phase. So Hayden was admitted on Tuesday to the Children's Hospital for an overnight stay. He was hooked up to fluids through an IV (via Iron Man port) to keep him well hydrated, which is required with one of the chemo meds he received, called cyclophosphamide (try saying that!!!). He also got a familiar chemo drug called cytarabine (AKA ara C). This is given with anti-nausea meds, also through the IV. Plus, we started a new chemo med, called thioguanine. This one's a pill that we give him every night - but must be on an emply stomach (so much for bed-time snacks).
The hospital stay was fairly uneventful. As is the custom, we brought Goosebumps movies...these cheesy movies scare the pants off kids but H loves them so they are a special treat reservied for the hospital (Viewers Choice Video was so touched, they give us 2 for 1 family movies...they're awesome with H). One unexpected but totally welcome perk of the scary movies was that Hayden got totally freaked out and insisted that I sleep with him. That may not sound like much of a bonus but I'll take 1/2 a hospital bed over the fold-down chair any day. In the end, neither of us got much sleep because he needs to frequently pee when he's on the IV drip.
On Wednesday, before being discharged, he was back at the PDU for a spinal shot of methotrexate (this too has occurred in every other treatment phase). Plus he has home nurse appointments today and tomorrow for thigh injections of cytarabine (he hates it!). Aside from the fact that he hid and I couldn't find the little bugger (he was quite pleased with himself over that), today went really well so hopefully he will be less anxious about tomorrow.
Hayden was sick this morning but he's been fine since...even keeping small amounts of food down (probably thanks to anti-nauseau meds we gave him). DI is, to say the least, a very intensive treatment phase...but it's also the last one before we hit maintenance. That's right, now that we're rolling again, we're only a measly 4 weeks away from cruise control (yeah!). Actually, the last 2 weeks are relatively easy so, really, we're are sooooo close.
With all of this chemo, we expect Hayden's blood counts to drop again...possibly in a week (back to neutropenia). So tonight, we are heading out to see Transformers: Revenge of the Fallen. Unfortunately, we have to miss Uncle Ray's birthday but we may have a very small window of opportunity because Hayden's friend, who has been patiently waiting, is heading out of town tomorrow. A few months back, Hayden gave his school buddy a gift card for the theater and made plans to see the movie together when it came out. However, Hayden's counts dropped (so no immune system) and he couldn't go out crowds. It is sooooo sweet that this little guy waited all that time for Hayden - by his own choice! Hayden is so pumped.
So we gotta go. Happy Birthday Uncle Ray...hope you have a great night too!
He easily cleared the minimum to restart the Delayed Intensification (DI) treatment phase. So Hayden was admitted on Tuesday to the Children's Hospital for an overnight stay. He was hooked up to fluids through an IV (via Iron Man port) to keep him well hydrated, which is required with one of the chemo meds he received, called cyclophosphamide (try saying that!!!). He also got a familiar chemo drug called cytarabine (AKA ara C). This is given with anti-nausea meds, also through the IV. Plus, we started a new chemo med, called thioguanine. This one's a pill that we give him every night - but must be on an emply stomach (so much for bed-time snacks).
The hospital stay was fairly uneventful. As is the custom, we brought Goosebumps movies...these cheesy movies scare the pants off kids but H loves them so they are a special treat reservied for the hospital (Viewers Choice Video was so touched, they give us 2 for 1 family movies...they're awesome with H). One unexpected but totally welcome perk of the scary movies was that Hayden got totally freaked out and insisted that I sleep with him. That may not sound like much of a bonus but I'll take 1/2 a hospital bed over the fold-down chair any day. In the end, neither of us got much sleep because he needs to frequently pee when he's on the IV drip.
On Wednesday, before being discharged, he was back at the PDU for a spinal shot of methotrexate (this too has occurred in every other treatment phase). Plus he has home nurse appointments today and tomorrow for thigh injections of cytarabine (he hates it!). Aside from the fact that he hid and I couldn't find the little bugger (he was quite pleased with himself over that), today went really well so hopefully he will be less anxious about tomorrow.
Hayden was sick this morning but he's been fine since...even keeping small amounts of food down (probably thanks to anti-nauseau meds we gave him). DI is, to say the least, a very intensive treatment phase...but it's also the last one before we hit maintenance. That's right, now that we're rolling again, we're only a measly 4 weeks away from cruise control (yeah!). Actually, the last 2 weeks are relatively easy so, really, we're are sooooo close.
With all of this chemo, we expect Hayden's blood counts to drop again...possibly in a week (back to neutropenia). So tonight, we are heading out to see Transformers: Revenge of the Fallen. Unfortunately, we have to miss Uncle Ray's birthday but we may have a very small window of opportunity because Hayden's friend, who has been patiently waiting, is heading out of town tomorrow. A few months back, Hayden gave his school buddy a gift card for the theater and made plans to see the movie together when it came out. However, Hayden's counts dropped (so no immune system) and he couldn't go out crowds. It is sooooo sweet that this little guy waited all that time for Hayden - by his own choice! Hayden is so pumped.
So we gotta go. Happy Birthday Uncle Ray...hope you have a great night too!
Monday, July 27, 2009
The plan(s)
Plan A:
- Tom takes H to clinic tomorrow and neutrophil count is at least .75
- Bed shortage still happening so H restarts his chemo as an outpatient
- Cindy leaves work a little early to take over at the clinic when Tom goes to work
- Everyone sleeps at home Tuesday night
- H feels well on Wednesday & Thursday
- We take off for the lake on Friday
- Hayden goes to see Transformers: Revenge of the Fallen after the long weekend
Plans B thru D:
- Neutrophil count is <.75 – skip steps 2, 3 & 7
- Neutrophil count is >.75 but no bed shortage - change step #3 to Cindy spends Tuesday night at the hospital with H; skip step 4
- H feels unwell after chemo treatments – change step #5 to Cindy works from home; skip step #6 and go directly to step #7
Got it?
Wednesday, July 22, 2009
8
Hayden is 8! He had a great birthday on Monday - we celebrated with family and friends and he got lots of amazing gifts.
Eight is considered a lucky number in more than one culture...not ours, but at this point, what the hell...let's go with the lucky 8 thing:
We have about 4 weeks left in DI - one measly month until we're in the maintenance phase! Everyone is eager to get going...except Hayden. He's quite content to stay chemo-free for a while longer. For him, the only downside is that he's neutropenic so he can't go out - which means he can't see Transformers. Plus we had to re-schedule his kids' birthday party because laser tag at FunFX is out of the question right now. But still, I wonder if he's somehow holding out on us...
Eight is considered a lucky number in more than one culture...not ours, but at this point, what the hell...let's go with the lucky 8 thing:
- Hayden's neutrophil count yesterday was .44 (4+4=8)
- His next appointment is July 28 (8 is the last digit in 28)
- His name starts with the 8th letter of the alphabet0
We have about 4 weeks left in DI - one measly month until we're in the maintenance phase! Everyone is eager to get going...except Hayden. He's quite content to stay chemo-free for a while longer. For him, the only downside is that he's neutropenic so he can't go out - which means he can't see Transformers. Plus we had to re-schedule his kids' birthday party because laser tag at FunFX is out of the question right now. But still, I wonder if he's somehow holding out on us...
Wednesday, July 15, 2009
Good 'ole Grover
Remember when Grover on Sesame Street educated us on relative distance by jamming his face in the camera and mumbling ‘near’, then galloping to the back of a cavernous room and screaming ‘far’. Well, if you missed that episode, here’s another attempt…
Close is when you…
…stop fiddling with your car stereo and look up in time to narrowly miss a parked car
…get the sturgeon all the way up to the boat before it breaks your line
…find the perfect pair of shoes, 50% off, but one size too small
Not even close is when you…
…have a neutrophil count of .3
This blog is brought to you by the letter F and the number .75.
Close is when you…
…stop fiddling with your car stereo and look up in time to narrowly miss a parked car
…get the sturgeon all the way up to the boat before it breaks your line
…find the perfect pair of shoes, 50% off, but one size too small
Not even close is when you…
…have a neutrophil count of .3
This blog is brought to you by the letter F and the number .75.
Tuesday, July 14, 2009
Neutrophils 101
This educational message is brought to you to prevent summer brain drain...
Neutrophils are a type of white blood cell that fights infection. When Hayden’s ANC (absolute neutrophil count) is low, we have to limit his exposure to…well almost everything except school…because he has a weakened immune system. As you can imagine, this is much more tolerable in the summer. His ANC is low because he is receiving aggressive chemotherapy treatments, which attacks both the healthy blood cells and the lymphoblasts (AKA blasts – these are the immature cells that went haywire and, if left untreated, would rapidly reproduce and crowd out the good guys). So we expect all of his blood counts (including red blood cells and platelets) to drop during or after treatments, then regenerate. At first, Hayden’s counts rebounded pretty quickly but they seem to be taking their sweet time lately…which delays treatments. The protocol requires that his ANC is at least .75 to continue chemo (normal is 1.5+).
Neutrophils are a type of white blood cell that fights infection. When Hayden’s ANC (absolute neutrophil count) is low, we have to limit his exposure to…well almost everything except school…because he has a weakened immune system. As you can imagine, this is much more tolerable in the summer. His ANC is low because he is receiving aggressive chemotherapy treatments, which attacks both the healthy blood cells and the lymphoblasts (AKA blasts – these are the immature cells that went haywire and, if left untreated, would rapidly reproduce and crowd out the good guys). So we expect all of his blood counts (including red blood cells and platelets) to drop during or after treatments, then regenerate. At first, Hayden’s counts rebounded pretty quickly but they seem to be taking their sweet time lately…which delays treatments. The protocol requires that his ANC is at least .75 to continue chemo (normal is 1.5+).
Ready?
Well, we find out today if Hayden’s ready to continue his Delayed Intensification treatment phase. If his neutrophil count is at least .75, he’ll be admitted to the CK5 ward in the Children’s Hospital for one night to run fluids and give him chemo. He was at .38 last week so this may be a close one…stay tuned.
Thursday, July 9, 2009
Go ahead JUMP
Hayden is loving his new trampoline! For a while we thought about getting a play structure but jumping is good physical therapy for him and it’s what he really wanted. A big thank you to the folks who generously contributed to this project. He will get years of enjoyment from it.
Hayden had an appointment on Tuesday, June 30 and, as suspected, his blood counts weren’t high enough to re-start chemo treatments. We did, however, make a day out of that clinic visit to rule out a blood clot in his Iron Man port (it’s rare, but it can happen). Dr. Stoffman suspected that Hayden might have one because his face was still puffy and his veins were really visible - but an ultrasound showed good blood flow. So that was a big relief…and the fact that he didn’t get any chemo means that he was feeling well for our Crowduck fishing trip! The weather wasn’t great but he loved it and went back out on Nutimik Lake the next day.
He was back at the clinic this Tuesday to see if he was ready to go. In fact, we were all prepared to spend that night in the hospital to start the second round of the Delayed Intensification treatment phase. Damned if he didn’t trick us again though…huh. His counts are still fairly low so we try again next Tuesday. The good news is that Hayden feels great, he’s happy, and active. It is so good to see him good! He recently golfed 9 holes and pretty much walked the whole course. He visited a movie set in Tyndall. He hit the driving range. He is a busy boy…and these are all things he can do despite being neutropenic (low on infection-fighting blood cells) because it’s all outdoors. The bad news is that it’ll be a little longer before we hit the maintenance phase (AKA cruise control)…and he still really wants to see Transformers!
Saturday, June 27, 2009
End of dex 2 in Delayed Intensification
"Where do babies come from?"asks Hayden as I start this blog. hehehehehe...Dad's on duty now.
By way of an update on Hayden's progress, the short version is that we've completed the second round of steroids (dex), spent 2 nights in the hospital, and he's neutropenic. And now (if you care to read on), the long version...
Hayden's chemo treatments became easier when we started giving him anti-nausea meds in the a.m. but either those drugs, the dex, or the combination made him very tired so most of that week passed in a fog for him. On the weekend, we made our first trip of the summer to Nutimik. Hayden's mood was less than jolly but he wanted to go and he's typically very active there so we thought it would be a good idea. We were getting a little worried about constipation (a common side-effect of his meds and a big problem during the first treatment phase) so we were trying to keep him active and hydrated. Unfortunately, the dex brought him down and he did not enjoy his lake experience. For me, this is the most difficult thing to deal with because it's so unlike him to be...I don't even know how to describe it....maybe sad...even resigned. So we came home early on Sunday and nothing really brought him out of his slump.
I worked from home on Monday so we went out for a walk to try to get things moving - no luck. The constipation was not helped by the fact that his favourite snack includes cheese. Right now his big thing is Rosemary & Olive Oil Triscuits, grated old cheddar cheese, and Vlasik pickles...also dill pickle popcorn....and ribs....and rice....chicken....and the list goes on.
By around 3:30 or 4:00 on Monday, he started complaining about back pain so we hit the streets again for another walk (thinking that constipation and laying around are causing the discomfort). The pain in his lower back quickly escalated so we phoned the on-call pediatric oncologist at the Children's Hospital. He feared an appendix problem or kidney stones so we raced to the hospital. By this time, Hayden was screaming in pain...and pretty much kept it up until the mophine was administered through his Iron Man port in the ER. They did blood work, a urine test, and (most importantly) an x-ray...turned out, he was full of poop...packed!
After several hours in the negative pressure room in the ER, we were admitted back into CK5. The next day and all of the following night were all about the laxatives (tastes bad!), hydration (means an IV pole), trips to the can (self explanatory), and soaking in a hot bath (soothes his sore little bottom). Despite very little sleep and a lot of discomfort, he was a real champ. Unbelievable really.
Hayden came home on Wednesday to a big surprise. As we pulled in the driveway, Grandpa Bennett, who is visiting from BC, walked out to meet us in the driveway. Hayden looked and said, "Hey, that guy looks like Grandpa!". It certainly did...was...and he was really happy.
He went to school on Thursday and Friday but we know from blood tests at the hospital that he's neutropenic (low on infection-fighting blood cells) so we're limiting his outings again. As soon as he's able, wants to see Transformers. His last day of school is Tuesday but he has appointments so Monday may mark the end of grade 2. It's been a crazy year (slight understatement) but despite the many days that he missed, he managed to keep up - both in terms of learning and friends. He's fortunate to have great classmates and teachers - all of the people at the school (principal, vice principal, office staff) are wonderful.
So we're done the dex and just waiting for his counts to rise again before we continue the Delayed Intensification chemo treatements. It's unlikely that he'll be ready to go for his next appointment on Tuesday, but we'll see. He said this morning that he feels like a normal kid again - like he doesn't have cancer anymore. That's probably because the we're done with the dex (hopefully for good!) but it's great to hear after what we just went through.
From a while back, here are some pics of Hayden at the finish line with Auntie Nadeen and cousin Chandler at the Walk for Life. A big thank you to Nadeen for supporting cancer research (raised more than $2k!) and everyone who walked, volunteered, and donated.
And finally, here's our moon-faced boy - he's still puffed up from the dex. Did I mention that his hair is falling out again? No matter...we already know that he's a good-lookin' bald dude.
By way of an update on Hayden's progress, the short version is that we've completed the second round of steroids (dex), spent 2 nights in the hospital, and he's neutropenic. And now (if you care to read on), the long version...
Hayden's chemo treatments became easier when we started giving him anti-nausea meds in the a.m. but either those drugs, the dex, or the combination made him very tired so most of that week passed in a fog for him. On the weekend, we made our first trip of the summer to Nutimik. Hayden's mood was less than jolly but he wanted to go and he's typically very active there so we thought it would be a good idea. We were getting a little worried about constipation (a common side-effect of his meds and a big problem during the first treatment phase) so we were trying to keep him active and hydrated. Unfortunately, the dex brought him down and he did not enjoy his lake experience. For me, this is the most difficult thing to deal with because it's so unlike him to be...I don't even know how to describe it....maybe sad...even resigned. So we came home early on Sunday and nothing really brought him out of his slump.
I worked from home on Monday so we went out for a walk to try to get things moving - no luck. The constipation was not helped by the fact that his favourite snack includes cheese. Right now his big thing is Rosemary & Olive Oil Triscuits, grated old cheddar cheese, and Vlasik pickles...also dill pickle popcorn....and ribs....and rice....chicken....and the list goes on.
By around 3:30 or 4:00 on Monday, he started complaining about back pain so we hit the streets again for another walk (thinking that constipation and laying around are causing the discomfort). The pain in his lower back quickly escalated so we phoned the on-call pediatric oncologist at the Children's Hospital. He feared an appendix problem or kidney stones so we raced to the hospital. By this time, Hayden was screaming in pain...and pretty much kept it up until the mophine was administered through his Iron Man port in the ER. They did blood work, a urine test, and (most importantly) an x-ray...turned out, he was full of poop...packed!
After several hours in the negative pressure room in the ER, we were admitted back into CK5. The next day and all of the following night were all about the laxatives (tastes bad!), hydration (means an IV pole), trips to the can (self explanatory), and soaking in a hot bath (soothes his sore little bottom). Despite very little sleep and a lot of discomfort, he was a real champ. Unbelievable really.
Hayden came home on Wednesday to a big surprise. As we pulled in the driveway, Grandpa Bennett, who is visiting from BC, walked out to meet us in the driveway. Hayden looked and said, "Hey, that guy looks like Grandpa!". It certainly did...was...and he was really happy.
He went to school on Thursday and Friday but we know from blood tests at the hospital that he's neutropenic (low on infection-fighting blood cells) so we're limiting his outings again. As soon as he's able, wants to see Transformers. His last day of school is Tuesday but he has appointments so Monday may mark the end of grade 2. It's been a crazy year (slight understatement) but despite the many days that he missed, he managed to keep up - both in terms of learning and friends. He's fortunate to have great classmates and teachers - all of the people at the school (principal, vice principal, office staff) are wonderful.
So we're done the dex and just waiting for his counts to rise again before we continue the Delayed Intensification chemo treatements. It's unlikely that he'll be ready to go for his next appointment on Tuesday, but we'll see. He said this morning that he feels like a normal kid again - like he doesn't have cancer anymore. That's probably because the we're done with the dex (hopefully for good!) but it's great to hear after what we just went through.
From a while back, here are some pics of Hayden at the finish line with Auntie Nadeen and cousin Chandler at the Walk for Life. A big thank you to Nadeen for supporting cancer research (raised more than $2k!) and everyone who walked, volunteered, and donated.
And finally, here's our moon-faced boy - he's still puffed up from the dex. Did I mention that his hair is falling out again? No matter...we already know that he's a good-lookin' bald dude.
Thursday, June 11, 2009
Not a happy camper...
...OK, still happy but not camping. The good folks at CancerCare canceled this weekend's camp even before the WHO made their alert level 6 announcement. At least one child at the clinic tested positive for swine flu and I suspect one or two campers had symptoms so they decided to be cautious (this is where I feign disappointment that my son isn't leaving home for the first time).
I actually am disappointed for the kids and the CancerCare staff who pour their hearts into programs like this. But it's just not worth the risk. So Dad and Uncle Shawn will find some fun things for the boys to do this weekend.
Hayden did a full day of school today - no barthiness. I suspect it's because of the anti-nausea meds I gave him this a.m. He didn't want to take it at first because that's how Elvis died...?
He also went to tae kwon do.
I actually am disappointed for the kids and the CancerCare staff who pour their hearts into programs like this. But it's just not worth the risk. So Dad and Uncle Shawn will find some fun things for the boys to do this weekend.
Hayden did a full day of school today - no barthiness. I suspect it's because of the anti-nausea meds I gave him this a.m. He didn't want to take it at first because that's how Elvis died...?
He also went to tae kwon do.
Watching WHO
We are closely watching the World Health Organization (WHO) to see if they move to an alert phase 6 today after an emergency meeting. That would mean that this weekend's camp is canceled. I'm not certain what it means for schools and daycares but we will seriously consider keeping Hayden home even if they remain open during this phase. His neutrophils (infection-fighting white blood cells) were at an all-time high on Tuesday but not for long.
Our next appointment is on Tuesday. The steroids keep his blood counts high but they're done for now so we expect the counts to drop next week, after he gets more chemo. He's at school today but he's come home early nearly every day. I think he's afraid of barthing at school (can't say I blame him). He was up sick in the middle of the night but it seems to come in waves for him. He's fine and eating like crazy, then after a little while he get all queasy. For the most part, he's doing well and he's happy. But is he a happy camper?
Our next appointment is on Tuesday. The steroids keep his blood counts high but they're done for now so we expect the counts to drop next week, after he gets more chemo. He's at school today but he's come home early nearly every day. I think he's afraid of barthing at school (can't say I blame him). He was up sick in the middle of the night but it seems to come in waves for him. He's fine and eating like crazy, then after a little while he get all queasy. For the most part, he's doing well and he's happy. But is he a happy camper?
Monday, June 8, 2009
The DI roller coaster
Extremes of a dexamaniac:
From cuddly teddy bear to wet cat
From barth bucket to feed bag
From silent tears to wise-cracking prankster
Hayden started his Delayed Intensification (DI) treatment phase last Wednesday. This is big one - he received methotrexate by spinal injection while he was sleeping, and vincristine and doxorubicin through his Iron Man port. Plus, he started a 7-day run of steroids, called dexamethosone (aka dex), taken orally twice a day. Quite the cocktail...but he seemed unphased by it and even went to school in the afternoon. The next day though, he was feeling barthy, emotional, and tired. He tried to go to school…actually made it into the classroom but we immediately returned home. On Friday, he made it through most of the morning before heading to the office, where he napped while waiting to be picked up. By the evening we could see a dark cloud settling over his mood, which was right on time - we expected it about 3 days after the dex started. We told him that it would happen and that it would pass but the anger or sadness is so intense that he was confused by it (think PMS x 10). At least, though, it pretty much coincides with the end of the tummy pains and barthiness (I think he may have this word added to the dictionary).
So Saturday was tough. We went to the fishing derby put on by Kids Fishing for a Cure. It's an awesome event and we had the best captain (Rory) and co-captain (Carlos). The real Hayden would have loved it...but the dexamaniac Hayden...well...he was less than impressed. Rory and Carlos did their very best to make the day special for Hayden. He caught two fish but just couldn't buck up. He started quietly crying and wouldn't talk so we went back to shore after about 30 minutes. He later confided that he didn't want to say anything for fear that it would be mean. He napped, then woke up as the real Hayden...just in time to collect the
very first trophy for the biggest bass. Yeah!!!! A mere 5 cm short of a master angler Silver Bass.
Then he started to eat and eat and eat. After 3 days of almost no calories our skinny little boy strapped on the feedbag on Sunday. Plus his spirits lifted and he's now very polite and affectionate (whew!).
Today is Monday and his appetite is still going strong but we often find that it's mis-guided. Hayden will beg for (OK demand) a certain food only to find that it's not at all what he wants when we put it in front of him. We, however, are not dex newbies so it really doesn't phase us.
He was back at the clinic today for asparaganese (peg) injections into his thighs. He was very anxious about it but, as always, the actual needles are not as bad as the thought of it. Regardless, we rented Goosebump movies as a treat (these are usually reserved for hospital stays).
Tomorrow is another clinic day...more chemo and a blood test. Next weekend is camp, which is organized through the kid's CancerCare Clinic. It's Hayden's first trip away from family and, while he's fine with it, I'm just not ready. But cousin Chandler will be with him and I'm sure they will have a blast. I'm still considering the chamo gear so I can hide out in the woods and watch over them (that's not creepy, is it?).
We're nearly a week into the 2-month DI treatment phase. So far, it's not too bad. Sorry for the long post but one more thing...thanks for following H's story and thanks for supporting cancer and Children's Hospital fundraisers. It's nice to know you're out there. Now go hug a kid.
From cuddly teddy bear to wet cat
From barth bucket to feed bag
From silent tears to wise-cracking prankster
Hayden started his Delayed Intensification (DI) treatment phase last Wednesday. This is big one - he received methotrexate by spinal injection while he was sleeping, and vincristine and doxorubicin through his Iron Man port. Plus, he started a 7-day run of steroids, called dexamethosone (aka dex), taken orally twice a day. Quite the cocktail...but he seemed unphased by it and even went to school in the afternoon. The next day though, he was feeling barthy, emotional, and tired. He tried to go to school…actually made it into the classroom but we immediately returned home. On Friday, he made it through most of the morning before heading to the office, where he napped while waiting to be picked up. By the evening we could see a dark cloud settling over his mood, which was right on time - we expected it about 3 days after the dex started. We told him that it would happen and that it would pass but the anger or sadness is so intense that he was confused by it (think PMS x 10). At least, though, it pretty much coincides with the end of the tummy pains and barthiness (I think he may have this word added to the dictionary).
So Saturday was tough. We went to the fishing derby put on by Kids Fishing for a Cure. It's an awesome event and we had the best captain (Rory) and co-captain (Carlos). The real Hayden would have loved it...but the dexamaniac Hayden...well...he was less than impressed. Rory and Carlos did their very best to make the day special for Hayden. He caught two fish but just couldn't buck up. He started quietly crying and wouldn't talk so we went back to shore after about 30 minutes. He later confided that he didn't want to say anything for fear that it would be mean. He napped, then woke up as the real Hayden...just in time to collect the
very first trophy for the biggest bass. Yeah!!!! A mere 5 cm short of a master angler Silver Bass.Then he started to eat and eat and eat. After 3 days of almost no calories our skinny little boy strapped on the feedbag on Sunday. Plus his spirits lifted and he's now very polite and affectionate (whew!).
Today is Monday and his appetite is still going strong but we often find that it's mis-guided. Hayden will beg for (OK demand) a certain food only to find that it's not at all what he wants when we put it in front of him. We, however, are not dex newbies so it really doesn't phase us.
He was back at the clinic today for asparaganese (peg) injections into his thighs. He was very anxious about it but, as always, the actual needles are not as bad as the thought of it. Regardless, we rented Goosebump movies as a treat (these are usually reserved for hospital stays).
Tomorrow is another clinic day...more chemo and a blood test. Next weekend is camp, which is organized through the kid's CancerCare Clinic. It's Hayden's first trip away from family and, while he's fine with it, I'm just not ready. But cousin Chandler will be with him and I'm sure they will have a blast. I'm still considering the chamo gear so I can hide out in the woods and watch over them (that's not creepy, is it?).
We're nearly a week into the 2-month DI treatment phase. So far, it's not too bad. Sorry for the long post but one more thing...thanks for following H's story and thanks for supporting cancer and Children's Hospital fundraisers. It's nice to know you're out there. Now go hug a kid.
Monday, June 1, 2009
Change of plans
Our next clinic visit was scheduled for Tuesday, June 2 but instead we went in last Friday. We wanted to get Hayden’s blood tested before the weekend to see if his neutrophil count was high enough to take him out in public places. The doctor was very doubtful but I’m so glad he agreed because, it turns out, Hayden has neutrophils to spare! YAY!!
You name it, we hit every germ-filled public place we could find. Friday after school was dinner at the food court and a movie. Saturday was shopping, shopping, shopping. Hayden spent his Survivor pool winnings + at Toys r Us, then we went on to Dollarama. On Sunday we did lunch at Big Guys, Hayden’s favourite restaurant, then went to Costco to get a trampoline. Good times, indeed...until we discovered the trampoline at the back of our neighbour's property after today's storm. But it's fine so balance is restored to the universe.
So we can skip the Tuesday clinic appointment and head straight to the pediatric day unit on Wednesday to start the delayed intensification (DI) treatment phase. We’re hoping to get at least a week into that round before his counts drop again…maybe more.
Next weekend is the Kids Fishing for a Cure derby out in Selkirk and we’ll be there. The following weekend, Auntie Nadeen is doing a 20-mile trek to raise money for CancerCare Manitoba. Yes, that's right...20 MILES! Now that's a good auntie. Although...on a good shopping day...nah. Donations for the 'Walk for Hayden' are gratefully accepted online: http://www.challengeforlife.ca/NetCommunity/Page.aspx?pid=345&frsid=1002
Tuesday, May 19, 2009
6 months today
Hard to imagine, but things have gotten pretty routine. I revisited some of the earlier posts in this blog - memories of heart-breaking moments and hard-won victories. There's no doubt that Hayden is much more mature and grounded - I think we all are (my grey hair is a testament). Now we're now nearing the end of the interim maintenance phase, which was the easiest one so far. Hayden was neutropenic through most of it, but he felt well, had good energy, and his spirits were high...can't ask for too much more than that.
So we're back at the clinic on June 2 to see if his counts are high enough to start the Delayed Intensification (DI) phase. If so, things get underway on June 3. If not, we wait until June 9 to do another blood test. As always, we're anxious to keep things moving along so we can hit maintenance (aka cruise control) sooner, rather than later. The next phase is scheduled to go 2 months. So cruising in August? Who knows...
This next DI phase likely won't be good times. Remember the roid rage that turned my sweet pea into a mean-spirited, puke-pan-flinging monster? Well the steroids make a reappearance for 2 separate 7-day stretches in this next phase. The doctor assures me that DI won't be as bad as that induction phase, but I'm phsyching myself for an onslaught. The difference is that this time, we know what to expect. It was a very different story when H was first diagnosed - he felt horrible, the chemo side-effects were new to us, he was in the hospital, and we were all shell-shocked...thinking that we had 3 years of that ahead of us! Oh well...if nothing else, the steroids will make for some interesting posts.
If you're a Survivor fan, you might know that Hayden's guy JT won the whole she-bang...and put a cool $75 in his pocket. Woo-hoo! Now if we could just go to a damn store to spend it.
And, a Hayden story to end with....He's decided what he wants to be when he grows up. When he announced this to me and warned that I may not like it because it's dangerous, I suspected that he was going to say a firefighter like Uncle Ray. But nooooo....he says he wants to be a vet. I know what you're thinking because I thought it too. Being a vet isn't dangerous...what a relief! Then he says, "No mommy, a vet like Rambo." That would be vetERAN....oiyyyy. But no hurry, he's going to be a kickboxer first. And that, my friends, is the real danger of neutropenia - TOO MANY MOVIES!
So we're back at the clinic on June 2 to see if his counts are high enough to start the Delayed Intensification (DI) phase. If so, things get underway on June 3. If not, we wait until June 9 to do another blood test. As always, we're anxious to keep things moving along so we can hit maintenance (aka cruise control) sooner, rather than later. The next phase is scheduled to go 2 months. So cruising in August? Who knows...
This next DI phase likely won't be good times. Remember the roid rage that turned my sweet pea into a mean-spirited, puke-pan-flinging monster? Well the steroids make a reappearance for 2 separate 7-day stretches in this next phase. The doctor assures me that DI won't be as bad as that induction phase, but I'm phsyching myself for an onslaught. The difference is that this time, we know what to expect. It was a very different story when H was first diagnosed - he felt horrible, the chemo side-effects were new to us, he was in the hospital, and we were all shell-shocked...thinking that we had 3 years of that ahead of us! Oh well...if nothing else, the steroids will make for some interesting posts.
If you're a Survivor fan, you might know that Hayden's guy JT won the whole she-bang...and put a cool $75 in his pocket. Woo-hoo! Now if we could just go to a damn store to spend it.
And, a Hayden story to end with....He's decided what he wants to be when he grows up. When he announced this to me and warned that I may not like it because it's dangerous, I suspected that he was going to say a firefighter like Uncle Ray. But nooooo....he says he wants to be a vet. I know what you're thinking because I thought it too. Being a vet isn't dangerous...what a relief! Then he says, "No mommy, a vet like Rambo." That would be vetERAN....oiyyyy. But no hurry, he's going to be a kickboxer first. And that, my friends, is the real danger of neutropenia - TOO MANY MOVIES!
Tuesday, May 12, 2009
We did good
Thank you for donating during the QX104 radiothon! Through the EISI matching gift program, we raised $98,700 for the Children’s Hospital. Overall, the raidiothon brought in about $600,000. Awesome!
As you may have guessed, my boss Mark Evans is a big supporter of the Children’s Hospital but his generosity does not end there. He also arranged a special gift for Hayden – a Wayne Gretzky autographed Oiler’s jersey. I sensed that my son did not fully appreciate the magnitude of this gift when he responded, “Cool. What’s your dogs’ names?” He did, however, notice everyone’s jaws drop when he showed it off at home….I think he gets it now. Mark recently had a run-in with cancer so he and Hayden are kindred spirits.
And while we’re talking about great gifts, here’s a picture of Bob presenting Hayden with a very cool bike. It’s actually double cool – the first reason is obvious, it is one sweet ride; the second reason is because it once belonged to Cody and he’s a cool kid. It’s too much bike for H right now, but he loves to sit on it in the garage.
It sounds funny to say that Hayden is a lucky kid but so many people go out of their way to make him feel that way…he thinks he is. And after everything he’s been through (not to mention struggles yet to come), good for him.
Monday, May 11, 2009
Some catching up to do...
It's been a while...my apologies to everyone who regularly checks-in for updates and worried when we were silent. Things have been busy but Hayden's doing very well.
His last appointment was Tuesday and his blood counts (specifically neutrophils) were finally high enough to continue with all of the chemo but he is STILL neutropenic - which means no public appearances. So much for 'easy capizzi'...I guess this treatment round is relatively easy but we didn't expect that he would be neutropenic for so long. Hayden was supposed to get escalating doses of methotrexate but his counts dropped almost right out of the gate. But, it's not a bad thing. Dr. Stoffman explains that if we're getting the innocent bystanders (that's the healthy blood cells), we're definitely doing a number on the bad guys (that's the blasts / leukemic cells). And we're not loading him up with high doses, which means less side-effects.
Hayden's attending full school days when he doesn't have appointments and goes to the occassional tae kwon do class. His spirits are high, his hair is coming back, but his appetite is hit and miss. We can't go to the movies or be around sick friends/family, but now that the weather's warmer, we're getting out a lot more. As much as possible, we're trying to enjoy this treatment round because the next one may be...shall we say....less fun.
Mother's Day was great! We spent some time at home (breakfast in bed and a gift hunt!) then
later with family. The previous Sunday was the Winnipeg Police Service 1/2 marathon to support the Canadian Cancer Society. We went and cheered on Christa, who was running in H's honour. He was there to hi-5 her just before the finish line. She did great and raised about $2k! Thank you to Christa and everyone who sponsored her.
As well, we raised a lot of $$ during the QX104 radiothon for the Children's Hospital, which so many of you supported. I don't yet have totals for the EISI matching gift donation but hopefully I can post them soon. Once again, thank you for donating, following Hayden's story, and reaching out in so many ways. It's definitely comforting for Hayden to know that we are not alone in this battle. We don't always respond, but we read every email, Facebook message, card, and everything else. H has definitely gained an appreciation for helping others, the way that he has been helped.
His last appointment was Tuesday and his blood counts (specifically neutrophils) were finally high enough to continue with all of the chemo but he is STILL neutropenic - which means no public appearances. So much for 'easy capizzi'...I guess this treatment round is relatively easy but we didn't expect that he would be neutropenic for so long. Hayden was supposed to get escalating doses of methotrexate but his counts dropped almost right out of the gate. But, it's not a bad thing. Dr. Stoffman explains that if we're getting the innocent bystanders (that's the healthy blood cells), we're definitely doing a number on the bad guys (that's the blasts / leukemic cells). And we're not loading him up with high doses, which means less side-effects.
Hayden's attending full school days when he doesn't have appointments and goes to the occassional tae kwon do class. His spirits are high, his hair is coming back, but his appetite is hit and miss. We can't go to the movies or be around sick friends/family, but now that the weather's warmer, we're getting out a lot more. As much as possible, we're trying to enjoy this treatment round because the next one may be...shall we say....less fun.
Mother's Day was great! We spent some time at home (breakfast in bed and a gift hunt!) then
later with family. The previous Sunday was the Winnipeg Police Service 1/2 marathon to support the Canadian Cancer Society. We went and cheered on Christa, who was running in H's honour. He was there to hi-5 her just before the finish line. She did great and raised about $2k! Thank you to Christa and everyone who sponsored her.As well, we raised a lot of $$ during the QX104 radiothon for the Children's Hospital, which so many of you supported. I don't yet have totals for the EISI matching gift donation but hopefully I can post them soon. Once again, thank you for donating, following Hayden's story, and reaching out in so many ways. It's definitely comforting for Hayden to know that we are not alone in this battle. We don't always respond, but we read every email, Facebook message, card, and everything else. H has definitely gained an appreciation for helping others, the way that he has been helped.
Monday, April 27, 2009
Your pledge to the Caring for Kids radiothon will triple
Well, Friday's clinic appointment didn't amount to much. Hayden's neutrophil count is still too low to continue treatment (in fact it went down!) so back we go tomorrow for another blood test. In other news...
The QX104 Caring for Kids Radiothon starts this week. Please consider making a donation to raise money for the Children's Hospital - you can triple the amount by indicating that it's part of the EISI Corporate Matching Program. Every dollar you pledge will be matched by my company, EISI, and our CEO, Mark Evans. The radiothon offically kicks off on Thursday, April 30 but phone lines opened today.
You can make a pledge by calling 953-KIDS or 866-953-5437; or on the world wide web at https://www.goodbear.mb.ca/radiothon_donation.aspx. Please be sure to indicate that your donation is part of a Corporate Matching Program and enter EISI as the Organization name.
The QX104 Caring for Kids Radiothon starts this week. Please consider making a donation to raise money for the Children's Hospital - you can triple the amount by indicating that it's part of the EISI Corporate Matching Program. Every dollar you pledge will be matched by my company, EISI, and our CEO, Mark Evans. The radiothon offically kicks off on Thursday, April 30 but phone lines opened today.
You can make a pledge by calling 953-KIDS or 866-953-5437; or on the world wide web at https://www.goodbear.mb.ca/radiothon_donation.aspx. Please be sure to indicate that your donation is part of a Corporate Matching Program and enter EISI as the Organization name.
We have great programs and facilities for sick kids in Winnipeg – which is so important in attracting top medical professionals. Since Hayden’s diagnosis, Tom and I have met many inspiring children who are bravely battling serious illnesses. Let’s give them every possible opportunity to succeed.
PS: Please don’t forget to indicate that your donation is part of the EISI Corporate Matching program.
Wednesday, April 22, 2009
Back to the clinic on Friday
Hayden returns to the clinic on Friday to see where his blood counts are at. If neutrophils are at least .5, he'll get 2 chemo meds at the clinic through his Iron Man port and 1 lumbar puncture at the Pediatric Day Unit (PDU). Stay tuned...
Sunday, April 19, 2009
2 out of 3
Hayden's neutrophils are still not high enough to continue with the regular treatment path but he did get 2 out of 3 chemo drugs during his Friday clinic visit. We were surprised because we were told that the thigh injections would be done on Saturday and only if his blood counts were good...and when I say surprise, I don't mean the happy-birthday-here's-a-present kind of surprise.
H was upset about the thigh injections. He can get pretty worked up about these ones but the anticipation is much worse than the needle. However, Nurse Wanda is very patient and she gave him plenty of time to 'get the feeling'. This is part of Hayden's poke routine - he asks them to get everything ready, then Mom or Dad covers his eyes, and he gets the feeling by concentrating on better thoughts. Basically, he goes to a happy place and the needle goes in with no problems (a topical anesthetic freezes the skin). This has served him well during needle pokes and tests (i.e., bone scans, MRIs, x-rays) and the routine gives him comfort...especially when he was getting needles from unfamiliar home care nurses.
So now what? Well, we're not sure yet. Dr. Cham is seeing Hayden while Dr. Stoffman is on vacation. She says the low counts may not be related to the chemo (maybe fighting an infection?) or it may be that he's already reached the maximum methotrexate dosage (in the capizzi method he gets escalating doses until his neturophils go down).
We're back at the hospital on Friday...
H was upset about the thigh injections. He can get pretty worked up about these ones but the anticipation is much worse than the needle. However, Nurse Wanda is very patient and she gave him plenty of time to 'get the feeling'. This is part of Hayden's poke routine - he asks them to get everything ready, then Mom or Dad covers his eyes, and he gets the feeling by concentrating on better thoughts. Basically, he goes to a happy place and the needle goes in with no problems (a topical anesthetic freezes the skin). This has served him well during needle pokes and tests (i.e., bone scans, MRIs, x-rays) and the routine gives him comfort...especially when he was getting needles from unfamiliar home care nurses.
So now what? Well, we're not sure yet. Dr. Cham is seeing Hayden while Dr. Stoffman is on vacation. She says the low counts may not be related to the chemo (maybe fighting an infection?) or it may be that he's already reached the maximum methotrexate dosage (in the capizzi method he gets escalating doses until his neturophils go down).
We're back at the hospital on Friday...
Thursday, April 16, 2009
Return to Neutropenia
If Neutropenia were a town…
…a giant Purell pump would rain down sanitizer every day
…the streets would be patrolled by anti-germ agents on the look-out for sneezers, kissers, and touchers
…visitors would be hosed down, masked, and gowned
…everything would be disposable
…we’d rent an apartment
Off to a non-start
And we’re off to NON-start (almost) in the Interim Maintenance phase. Tuesday’s blood test revealed that our dear boy is, once again, neutropenic. Hayden’s neutrophils were at 0.35 and need to be at least .5 to keep going. So he didn’t get his chemo and we’re back to the clinic tomorrow for another blood test. If we’re good to go, he’ll get two chemo drugs through his Iron Man port and we’ll hit the PDU on Saturday for thigh injections. Otherwise, he gets one chemo drug tomorrow and we wait until next Tuesday for another test.
Ya think we’d stop being surprised by these delays. We’re just so happy to make progress that it doesn’t even occur to us that we’d get ANOTHER delay. Oh well…here’s what we have learned about fluctuating blood counts: we can’t control it; being anxious about it doesn’t make a difference; and things could be a whole lot worse. Hayden is in great spirits and generally feeling well. His appetite is almost normal and he hasn’t felt barthy since his last chemo treatment. If fact, he’s gaining a bit of an independent streak.
Hayden now prefers to go solo into the treatment room at the clinic when he gets blood tests (I spy outside the door). He wants to start taking the school bus again (I call shot gun!). And, he’s talking about going to a kids’ CancerCare camp (I’m pricing out camo gear). Hopefully this is just a phase…
And now for the biggest and bestest news of the day: Hayden went back to tae kwon do. It was kind of a last minute thing but he was absolutely sure that he wanted to go. It was physically challenging for him and he really struggled at times, but he never stopped trying. The determined look on his face took me back to his first hospital stay (shortly after he was diagnosed) when his leg problems started. He mustered every bit of will to move his leg and even talked himself through the pain. I knew right then that he was a warrior and no matter how hard things got, he would never quit. He is an inspiration. We are so incredibly proud of him.
Saturday, April 11, 2009
Just like riding a bike
What is this...spring? I really, really, really hope so.
We had a blast on Thursday when we rented a kids' theme room at the CanadInns and hung out at the pool/water slides. Hayden and cousin Chandler really enjoyed it - great way to kick off the long weekend. When we got home, we pulled out H's old (smaller!) bike to see how he would do. He wore the usual precautionary helmet, along with elbow pads, knee pads, and cycling gloves (not kidding) because we were worried that his lack of balance and strength might send him into the ditch (should've had him in a life jacket!). But he did great and made it further than we expected so we'll be taking the new orange bike on it's maiden voyage today.
Yesterday's 2/3-triathlon (swimming and cycling) really sucked out H so, after a 2-hour nap, we spent a quiet night on the couch watching Survivior. For the rest of the weekend, we're looking forward to family dinners and, of course, lots of Easter Bunny droppings.
Hayden's appetite is returning but his keen (maybe distorted?) sense of taste and smell really make eating an adventure for all of us. But we're finding enough options to keep him looking good. Plus, his hair is coming back in! I'll try to upload some pics this weekend.
Happy Easter from all of us!
We had a blast on Thursday when we rented a kids' theme room at the CanadInns and hung out at the pool/water slides. Hayden and cousin Chandler really enjoyed it - great way to kick off the long weekend. When we got home, we pulled out H's old (smaller!) bike to see how he would do. He wore the usual precautionary helmet, along with elbow pads, knee pads, and cycling gloves (not kidding) because we were worried that his lack of balance and strength might send him into the ditch (should've had him in a life jacket!). But he did great and made it further than we expected so we'll be taking the new orange bike on it's maiden voyage today.
Yesterday's 2/3-triathlon (swimming and cycling) really sucked out H so, after a 2-hour nap, we spent a quiet night on the couch watching Survivior. For the rest of the weekend, we're looking forward to family dinners and, of course, lots of Easter Bunny droppings.
Hayden's appetite is returning but his keen (maybe distorted?) sense of taste and smell really make eating an adventure for all of us. But we're finding enough options to keep him looking good. Plus, his hair is coming back in! I'll try to upload some pics this weekend.
Happy Easter from all of us!
Subscribe to:
Posts (Atom)
Posts
