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...

Still no chemo

Last week's blood test revealed that Hayden's counts are climbing but he's still neutropenic (low neutrophil count so compromised immune system). So still no chemo...it's been a nice break but it's definitely time to get back in the game. We go again next Tuesday for another blood test. Surely by then Hayden's counts will be high enough to re-start chemo. Surely Dr. Stoffman will lower the chemo dose so his counts don't nosedive again. Shirley and Lavern had the best theme song in tv history.

And back down we go

...all the way down to .37. So Hayden is once again neutropenic. I blame Hollywood. Every time they release a Twilight movie, Hayden's counts go through the floor and he can't go to the theater. He is, however, OK to go to his Mini-U camp next week. His doctor says that, like school, it's a semi-controlled environment (unlike a theater, mall, or restaurant).

I wasn't all that surprised because Hayden was sick on Monday (regrettably, it's likely a bug that I passed on). Yep, the barth bucket made a speedy return...but at least we haven't had to re-pack the hospital bag. Anyway, seeing as he may have a virus that could affect his blood counts, the doc is holding steady at current chemo doses but putting it on hold for a few weeks. So no M&M (mercaptopurine and methotrexate), but he started steroids on Tuesday.

On the follicle front, Hayden finally agreed to a haircut so he won't have a wild fro in his birthday pics next week. He's having a family bash on Tuesday and then his friends are coming over on Wednesday for the 'biggest water fight in the world'. woo-hoo!

Summer is here!

We just got in last night from our 5-day trip to Minneapolis. Hayden did every ride he could at Valley Fair...and the weather was perfect for an afternoon at the water slide park. We also did the Mall of America - Nickelodeon Universe and LegoLand. Plus Hayden had a blast playing in the outdoor pool at our hotel. Good times.

With Hayden out of school and me out of work, we're looking forward to some hard-earned R&R over the next few weeks. His next dr. appointment is Tuesday so a report on blood counts will follow.