...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.
Thursday, June 11, 2009
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.
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