In about 2 hours, Hayden will be arriving home from his last day of school - then the holidays officially begin! We're UNsetting the alarm clocks until January 6!! Well...Hayden and I anyway. Did I mention that I love, love, love working from home? Did I mention that I'm working from home?
3 days to go!
Wednesday, December 22, 2010
Sunday, December 19, 2010
Rockin' around the Christmas tree
Hayden's rockin' the neutrophils around the Christmas tree. His count was 1.01 on November 30, then back up to 2.3 on Friday. So for now, we're holding steady on the chemo doses but we'll continue to closely monitor it. It's great that he has an immune system (along with the flu shot) during this crazy time when so many people are down with a bug. Hayden had a bad cold that took him out of commission for day or two but he managed to kick it fairly quickly.
It was a crazy week with Christmas concerts, hockey, a clinic appointment, and two birthday parties but all of it went well. The Falcons have only lost one league game all season so they are riding high. Hayden is still loving it. He's with a great bunch of boys who all seem eager to help him score his first goal. It's coming...I can feel it! But even if it doesn't, Hayden is totally stoked to celebrate his teamates' goals.
Another Survivor season came to an end tonight and Hayden, once again, came out a winner. Not a big-ticket pool this time but a sweet side bet with Joycie (pay up babe!). He knows how to pick them.
Anticipation about Santa's impending arrival is growing. It's so much fun. We did our traditional Polar Express viewing - Hayden really related to the skeptical main character this year but, in the end, he is full-in. Yay!
School's out on Wednesday. Looking forward to getting some presents wrapped and under the tree so I can figure out if I'm done (not nearly, I suspect). Only 6 more days!!!!
It was a crazy week with Christmas concerts, hockey, a clinic appointment, and two birthday parties but all of it went well. The Falcons have only lost one league game all season so they are riding high. Hayden is still loving it. He's with a great bunch of boys who all seem eager to help him score his first goal. It's coming...I can feel it! But even if it doesn't, Hayden is totally stoked to celebrate his teamates' goals.
Another Survivor season came to an end tonight and Hayden, once again, came out a winner. Not a big-ticket pool this time but a sweet side bet with Joycie (pay up babe!). He knows how to pick them.
Anticipation about Santa's impending arrival is growing. It's so much fun. We did our traditional Polar Express viewing - Hayden really related to the skeptical main character this year but, in the end, he is full-in. Yay!
School's out on Wednesday. Looking forward to getting some presents wrapped and under the tree so I can figure out if I'm done (not nearly, I suspect). Only 6 more days!!!!
Tuesday, November 23, 2010
Oh yeah...
There's so much going on that I forgot to do a neutrophil update. They're back! Hayden's count was 2.1 on Friday so Dr. Stoffman is inching up one of his chemo meds. Here we go again...
The Falcons won both hockey games this weekend, rocketing them to a second-place tie. H is so excited. Whatever he may lack in experience, he definitely makes up in team spirit. He tries hard out there he's definitely improving. On Sunday, he damned near scored! I think the coach was as excited as we were (without the tears, of course). After the game, he shot out of the dressing room to inform Grandma and I that he got player of the game. Atta boy!
We're back at the clinic for an Iron Man shot of chemo and another blood test next week.
The Falcons won both hockey games this weekend, rocketing them to a second-place tie. H is so excited. Whatever he may lack in experience, he definitely makes up in team spirit. He tries hard out there he's definitely improving. On Sunday, he damned near scored! I think the coach was as excited as we were (without the tears, of course). After the game, he shot out of the dressing room to inform Grandma and I that he got player of the game. Atta boy!
We're back at the clinic for an Iron Man shot of chemo and another blood test next week.
Friday, November 19, 2010
2 years!?
It's true. It's exactly two years since the proverbial punch in the gut. I have to admit, there were times (I call them dark moments) when I privately wondered how we would get through 3 1/2 years of treatment. I wish that I could have had a tiny glimpse into the future...that I could have seen Hayden playing hockey or even just being a little bugger. We've come so far.
At this fall's family camp, a friend reminded me that just last year Hayden had to take one step at a time to climb the waterside. It brought back a mental flash of our frail little bald boy. But at that time, we were thrilled because....we had come so far.
Cancer changes everything. Everything looks different when the world is sideways. We appreciate everything more....especially the family and friends who are helping us through this. Thank you.
To celebrate this momentous occasion, we will brave the snow to stand in line for hours to be among the first Winnipeggers who see the latest Harry Potter movie. Woo hoo!
At this fall's family camp, a friend reminded me that just last year Hayden had to take one step at a time to climb the waterside. It brought back a mental flash of our frail little bald boy. But at that time, we were thrilled because....we had come so far.
Cancer changes everything. Everything looks different when the world is sideways. We appreciate everything more....especially the family and friends who are helping us through this. Thank you.
To celebrate this momentous occasion, we will brave the snow to stand in line for hours to be among the first Winnipeggers who see the latest Harry Potter movie. Woo hoo!
Sunday, November 7, 2010
The first Falcon game
It's official - Hayden is a full-fledged Falcon. They won their first hockey game on Friday - 7 to 2. The stands were filled with family and friends who came out to watch Hayden's debut. It was very exciting...but I'm sure the other spectators thought we were nuts (they likely don't know about Hayden's illness). I talked to one parent who said her son started at age 5, and the other kids were skating circles around him. Yikes. Hayden is 9. But he is loving it. He doesn't have great stamina and his skating (actually stopping) needs a little work but aside from that, he looks like any other kid out there. It was a great night.
Hayden had another blood test at the clinic on Tuesday. His counts are good!! Not stellar but totally acceptable numbers - across the board, including neutrophils! So we are holding steady on chemo doses...except for a small increase to account for his age/weight. On Wednesday, he had his quarterly spinal injection of vincristine and he started his monthly 5-day pulse of steroids. So far, so good. No major eruptions but the poor kid is really dragging his butt...even more than when his counts are low. So we'll be keeping an eye on that and maybe taking him back for an unscheduled clinic appointment next week.
More to come...
Hayden had another blood test at the clinic on Tuesday. His counts are good!! Not stellar but totally acceptable numbers - across the board, including neutrophils! So we are holding steady on chemo doses...except for a small increase to account for his age/weight. On Wednesday, he had his quarterly spinal injection of vincristine and he started his monthly 5-day pulse of steroids. So far, so good. No major eruptions but the poor kid is really dragging his butt...even more than when his counts are low. So we'll be keeping an eye on that and maybe taking him back for an unscheduled clinic appointment next week.
More to come...
Wednesday, October 20, 2010
We'll see...
It's been nearly a month since my last blog post...where does the time go? What's new, you ask? Well....Hayden just re-started chemo after ANOTHER 2-week break. No, I'm not joking. His neutrophil count crashed again. As I said in an earlier post, they can't go much lower on the methotrexate so now he's down to 25% on mercaptopurine too. At the clinic yesterday, they also did a TPMT test on Hayden - in a nutshell, low TPMT activity would explain why the meds make his counts drop. In this case, I think Dr. Stoffman would simply be happy to stay with a low dose. We'll see.
We were out in Portage la Prairie last weekend for the annual Family Camp put on by Candlelighters, an organization for families with children who have cancer. Great event. My heart breaks for the new families and the ones who are struggling but nothing beats watching the kids playing in the pool, hanging out, and bonding. I guess the same rings true for the parents. We all had fun.
Hayden's molar came out (once again at Auntie Mel's house) and he's got another lose tooth. Hockey is going well. We're reading Breaking Dawn (oiiyyy....lots of censorship). I think that about sums it up. I'm still active on my job hunt but considering a few different paths. We'll see.
We were out in Portage la Prairie last weekend for the annual Family Camp put on by Candlelighters, an organization for families with children who have cancer. Great event. My heart breaks for the new families and the ones who are struggling but nothing beats watching the kids playing in the pool, hanging out, and bonding. I guess the same rings true for the parents. We all had fun.
Hayden's molar came out (once again at Auntie Mel's house) and he's got another lose tooth. Hockey is going well. We're reading Breaking Dawn (oiiyyy....lots of censorship). I think that about sums it up. I'm still active on my job hunt but considering a few different paths. We'll see.
Wednesday, September 22, 2010
New starts
Grade 4 is off to a good start for Hayden. And after (another!) 2-week break from chemo, he's re-started his meds. Dr. Stoffman refers to him as the crash kid because his blood cell count nosedives so easily - he's now at 25% of the regular dose for methotrexate. He really can't go much lower. The other meds are still at 50% (fingers crossed). The idea is to get as much chemo in before March 24, 2012 as possible so these breaks are disconcerting. However, there's comfort in knowing that if the chemo is attacking regular blood cells, the bad guys aren't getting in either.
Another new start - hockey! woo hoo! Hayden's 4th 'tryout' session is on Friday. If you're at the Dakota arena, you'll recognize me as the cornball standing in the back with a relentless grin. All of the kids look so big, and powerful, and healthy. I guess if you spend enough time around the kids' CancerCare clinic, you come to appreciate the simple things. I have to keep myself from cheering when 'the other team' scores...hehehe...such a cornball but I love it. All of the parents who know H have seen him at his worst and they are all very excited to see him on the ice. Hopefully, they'll also understand when Hayden takes his first hit and I climb over the glass...hehehe...joking!
So Hayden's started school, chemo, and hockey...it's time for me to get a job. I've ramped up my search efforts and I'm looking forward (actually eager to start?!) my next adventure. I'm also volunteering at The Rainbow Society and Co-Chairing the Parent Advisory Council at H's school.
What else...well, H is about to lose his first molar (ugh). Is that normal?! So gross. When he was little he begged me to pull a lose front tooth because it was bothering him when he ate. It didn't come on the first yank...quite honestly, I've never been the same since. We're going to the dentist tomorrow, which means a round of penicillin for H (and maybe some Valium for Mom?). After everything we've been through, this is what really turns my stomach. Go figure.
Another new start - hockey! woo hoo! Hayden's 4th 'tryout' session is on Friday. If you're at the Dakota arena, you'll recognize me as the cornball standing in the back with a relentless grin. All of the kids look so big, and powerful, and healthy. I guess if you spend enough time around the kids' CancerCare clinic, you come to appreciate the simple things. I have to keep myself from cheering when 'the other team' scores...hehehe...such a cornball but I love it. All of the parents who know H have seen him at his worst and they are all very excited to see him on the ice. Hopefully, they'll also understand when Hayden takes his first hit and I climb over the glass...hehehe...joking!
So Hayden's started school, chemo, and hockey...it's time for me to get a job. I've ramped up my search efforts and I'm looking forward (actually eager to start?!) my next adventure. I'm also volunteering at The Rainbow Society and Co-Chairing the Parent Advisory Council at H's school.
What else...well, H is about to lose his first molar (ugh). Is that normal?! So gross. When he was little he begged me to pull a lose front tooth because it was bothering him when he ate. It didn't come on the first yank...quite honestly, I've never been the same since. We're going to the dentist tomorrow, which means a round of penicillin for H (and maybe some Valium for Mom?). After everything we've been through, this is what really turns my stomach. Go figure.
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