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
Tuesday, September 29, 2009
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!
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