Signing off

It seems fitting that on the eve of Hayden’s last spinal tap, I’m writing this last blog post (you wondered if I would!). We have a little celebration planned for when he wakes up in the Children’s Hospital tomorrow. The big celebration is yet to come – a Harry Potter Wizarding Word extravaganza. Hayden is a huge HP fan so this will be an amazing vacation at Universal in Florida with good friends and family. We are all so excited!

This is an all-around milestone week – last spinal tomorrow, last chemo pill on Saturday, and last steroid on Monday. Of course, we’ll still be regulars at CancerCare. Hayden will be closely monitored in the coming months, then to a lesser degree over a longer time. And his weekend antibiotics will continue for six more months.

Then, on April 21, we gather with all of the friends and family who traveled this journey with us. This event is to thank everyone who sent messages, food, gifts, prayers, and love. I can’t tell you how much strength we gained from people who supported us in some way. For us, every day is a celebration but I hope you’ll join us to mark the end of a nearly 3-and-a-half-year journey….and to collectively exhale.

Here’s a link to the invitation: http://new.evite.com/?utm_source=other_email&utm_medium=email&utm_content=title&utm_campaign=invite_details&eml=g_inv#view_invite:eid=034CAAQZXGK5ZYCMSEPBNPXBUDNTNI&gid=034CAAPMT7NZ5QB5CEPBOPK4WJXLMQ

If, for some reason, you can’t RSVP on that web page, just email me at cindyanne07@yahoo.ca and I’ll hook you up!

Before I sign off this last time, I need to say that we are very happy but also very humble. Over the years, we came to know some remarkable kids – some who have won their battles and others who continue to bravely fight. Sadly, some did not make it. All of these children hold a special place in our hearts.

Not

An update on what did NOT happen this week - clinic. That's right, we skipped our regular bi-weekly (or semi?)...our every-two-week trip to CancerCare because Hayden's counts have been fairly stable. Cool huh?

Buh da buh ba bah....I'm lovin' it.

Isn't it ironic?

Three days ago, I blogged about how easy Hayden's PDU appointments are now. Well, today Dr. Stoffman suggested that we should skip a trip to the Children's Hospital and just do the lumbar puncture in the clinic...today....awake! I almost swallowed my tongue trying to keep my mouth shut. Hayden responded by ducking his chin into his chest and quietly shaking his head. I'm pretty sure he thought we were going to do it anyway because he had tears in his eyes. The doctor immediately retracted his suggestion and I did not flip out (so close). I simply told Hayden later, when we had a chance to talk, that I think he made the right decision.

Yeah, I really do think...

Survivor Pool - Get in on the action

The new season starts on Feb. 16 and it promises to be a good one. Hayden and I are big fans so I'm taking over the pool to keep it going and you can get in on it. For $5 you get a cast member from a random draw. There are 18 players so the winner takes home a cool $90.

There's an interesting twist this year...players who get voted off go to 'redemption island' where they go head to head with the next/last loser - the winner from that battle gets back in the game. hehehehe This will be interesting.

Email me if you want a piece of the action: cindyanne07@yahoo.ca. There are 13 spots left.

He shoots....

...and, woo hoo, he scored!! Hayden got his first goal last weekend, and an assist too. He is definitely coming into his own, with a little help from his very supportive teammates. But they're not just great kids, they are great hockey players too. The Falcons are currently ranked in the #1 spot for 9A3. Can you believe it?

Hayden's blood counts are still going strong. His neutrophils were at 2.06 nearly 2 weeks ago but we're holding steady on the chemo doses so far. He sees his pediatric oncologist, Dr. Stoffman, on Tuesday so we'll see if he wants to try an increase. While at the CancerCare Clinic, Hayden will also get a shot of vincristine via his Iron Man port and start another 5-day round of steroids. Then on Wednesday, we head back (this time to the Children's Hospital - pediatric day unit) for a spinal injection of methotrexate. Everybody cringes when I say that but, really, it's no big deal for Hayden. He's totally asleep for the procedure and he doesn't mind missing school to play DS and watch cartoons. Plus, he gets a little gift from the cart and all the nurses love him. You might even say that he looks forward to the quarterly (used to be monthly) PDU visits. Once again, I so wish that I had some idea 2 years ago that this would get easier. Or maybe someone told me and I just couldn't believe it...who knows.

I have been told though, by more than one person, that today's procedures are a far cry from the way they were done a few years ago - with the child awake. ugh. We've been through some pretty ugly stuff but that procedure would be absolute hell under those conditions. I'm so thankful that treatment for childhood leukemia has progressed to the point we are at today. There's still a long way to go but the advances are very encouraging. I hope we can do the same for all cancer treatments. Even though we are more than a year out from our last hospital stay, our hearts are with all of the brave kids battling on ward CK5...and, of course, all of our friends at the clinic.

Happy New Year!

Benjamin Franklin said: Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man.

It's a nice idea but frankly, I think my vices are what got me through the last 2 years. Oh well, I suppose I get the point about neighbours...but I'm not in the market for a better man.

The sun is once again shining in the Bennett house. Hayden has finally rebounded from the flu and a 5-day stretch of steroids that felt more like 5 weeks. The flu hit on the 22nd and even though he stopped barthing shortly after, he lacked energy and an appetite until yesterday. The steroids didn't help either. As it turned out, we canceled most of our plans over the holidays but we still enjoyed it, and our boy back now so all's well.

Back to school on Thursday. Back to clinic next Tuesday. Back to our 'normal' routine. I'm ready...it's time.

Hope you enjoyed the very best of the holidays. Cheers to a happy 2011!

The countdown begins

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!

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!!!!

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...

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.

More pics

This was Hayden's 'busy week'- he had a blood test and appointment with Dr. Stoffman at the clinic on Tuesday, a spinal at PDU on Wednesday, and he started his 5-day pulse of steroids.

Good news - his neutrophil count is slowly climbing. He's at .89, which is up from .79 two weeks ago (whew!). Hopefully his counts continue to rise so we can maintain the current chemo levels, which are at 50 and 75%. More good news - he's done with monthly spinal injections. He goes to PDU next month, then every three months after that. Plus if his counts level-out, he'll need fewer trips to the clinic for blood tests (yay!).

For whatever reason, the steroids are wreaking havoc with Hayden this round. It doesn't take much to set off his temper and the food cravings are wicked. For example, he decided that he doesn't want a much-needed haircut...which is fine (especially considering that he lost all of his hair - twice) but he waited until he was sitting in the barber chair to exercise his follicle rights. Last night we went out to Transcona in a downpour to get Quality Pizza (the one by us is temporarily closed) because nothing else would do. Yep, it's a long 5 days.

Below are some pics from Kids Fishing For a Cure. Unfortunately, the river was too high to have boats on the water but we had fun fishing from the shore. Hayden got another trophy - this time for a 14-inch sauger. It was a great event and what a difference from last year! It was awesome to see him having fun and hanging out with his good buddies from clinic. Then last weekend, he and cousin Chandler hung out with them again at Camp Indigo. It's organized by CancerCare, from Friday to Sunday at Camp Arnes. I wasn't all that keen about having him gone for a whole weekend (honestly, I don't even like 1-night sleepovers with family) but with Dr. Disoronno's help, I did just fine. I guess I've come a long way too.
















Reeling in a big one





















Now that's a big bass fish
















Kicking bass and taking names

Just the facts

I promise...today's post will NOT make you cry.

Hayden's neutrophil count on Tuesday was .79. It's on the low side, likely because Dr. Stoffman once again increased some of his chemo meds. Hayden's chemo is a cocktail of 5 or so drugs - he takes some orally at least once a day, plus monthly(ish) via his Iron Man port and lumbar puncture. The plan in the maintenance treatment phase is to give the maximum amount that his body will tolerate. That's why they watch his blood counts so closely - especially infection-fighting neutrophils (a type of white blood cell). So they'll keep increasing one or more of the meds to see if his counts stay in the optimal range. If not, we have to wait until they come back up, then try a different mix. No two kids metabolize drugs the same way so it's a trial-and-error thing. Hayden, however, continues to baffle his doctor with bouncing counts. Of course, a simple cold can throw everything out of whack so there are a lot of factors in play. Even though his neutrophils are on the low side right now, we're staying the course on the meds and testing again in 2 weeks.

Kids Fishing For A Cure is this weekend! Yay! This is a great event...and Hayden can enjoy it more this year because he's feeling MUCH better. He's looking forward to hanging out with his clinic buddies and we've asked for Captain Rory again. Can't wait to introduce him to the real H-Dawg (vs. the roid monster he met last year). Maybe we'll even with a big-bass trophy.

Happy, happy, happy. See...no tears.