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.

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!

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...

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.

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.

How far we've come

A year ago at this time, Hayden was in the hospital and dealing with some nasty food issues. We had just finished an intense treatment phase, which made his blood counts bottom out, which made his temperature skyrocket. No fun. Fast forward 365 days and, while Hayden's counts aren't exactly stellar, his overall progress certainly is. That's the head space I was in last week during Hayden's hockey camp. It's the first time he ever had a stick on the ice and I had mixed feelings about it, especially after I dropped him off (at 7:45 AM!) on the first day. All of the other kids had played before. They all had fancy rolling bags and water bottles (like the rookie I am, I sent Hayden with a juice box). I don't know if he noticed that but I left feeling sooooo nervous for him. Thankfully, he was on the same team as a friend from tae kwon do. It's a coincidence of the highest magnitude that this friend was also in the same Mini-U camp a few weeks ago...must be a good omen.

On the final day of camp, parents were invited to watch the game. Well, when I saw him on the ice it took me a few minutes to get my emotions under control. I couldn't help but think back to a time when we had to force him to get out of bed and walk a few agonizing steps. And there he was with his equipment on looking so damn big, curls poking out the bottom of his helmet, and playing hockey! I'm watering up just thinking about it. I'm so proud of him for doing this, despite the fact that all of the other kids are clearly more advanced (and bigger!). He stuck with it and has every intention of playing this winter. I can't wait to be a hockey mom.

Then and now...

First day of grade 3 (Sept. 2009)

9th birthday (July 2010)


Along the lines of celebrating progress, we'll be attending a party this weekend for a good friend who has just completed his leukemia treatments. That's it - all done! Jesse's 8 years old and, although we met him through CancerCare, he attends the same school as Hayden. Congrats Jesse!!! We're so happy for you!

Neutrophils at twilight

We celebrated Hayden's rebounded blood counts in the usual way - lots of public outings. His neutrophils are at 1.12 so he headed straight out to spend up the gift cards he received for his birthday and catch a show. We saw the latest Twilight movie, Eclipse. Yikes! The 'talk' between Bella and her father raised a few questions in my young son's head. I promised to explain after the movie but, so far, it hasn't come up. That's almost scarier than the Paranormal Activity 2 trailer.

So we're back at 50% chemo doses, which is where he previously maintained good blood counts. Plus today Hayden visited the PDU to get methotrexate via a lumbar puncture (this is now quarterly rather than monthly) and vincristine via his Iron Man port. And he started his monthly stretch of steroids - but this time I was thinking ahead and asked for a big hug before I gave him his first pill. That outta get me through the next 5 days.

Hockey camp starts next week. More to come...