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.

A time to remember

I've started coming out of my emotional cocoon...look out.

Since Hayden was diagnosed with leukemia, I've been very careful to stay within certain boundaries. I avoid sad movies and books...even conversations. I try to focus on little victories and progress, and never on set-backs or bad news. So far it's been a pretty good way to protect what I call a fragile veneer. I knew that, if cracked, it would shatter and all hell will ensue. Well, it's gone...

Last week, Tom and I attended the funeral of 2-year-old Tristin, a little ray of sunshine at the clinic and on the ward. His mother Kristen and I became friends. Although our children had very different illnesses and treatment plans, we both knew the fear, helplessness, and pain of having sick little boys. We crept into each others' hospital rooms at night to see how the day went, we shared sushi, and we talked about 'normal' things. Tristin's passing is absolutely heart breaking. We will always remember his beaming smile and beautiful spirit. Kristen, her husband Brad, and their daughter Alyssa are back home in Thompson now but our thoughts are with them every day.

This Friday, I'll join Kendra's Walk to honour a very brave and kind young woman. You may have heard of the many good deeds that she did in her short 18 years and the amazing legacy that she leaves behind. I couldn't bring myself to attend her service in December but I think about her and her mom all the time. I can vividly recall a time at the clinic when I was trying to soothe an increasingly anxious Hayden before his thigh injections. Kendra's eyes welled up while she watched us, then she came over and gently placed her dog Kemo on his lap. I can't say the distraction worked but I was never so touched by someone's empathy and I realized that, in some ways, she understood Hayden better than I ever could. Rest easy, Kendra.

And now I smile as I remember Jamie. He didn't have cancer...I knew him as the first son of my best friend before I ever entered the world of clinic visits and hospital stays. He was a gentle spirit who touched the lives of each person he met. He was pure sweetness.

I won't dwell on sad events but, while the veneer is gone, I'm taking time to remember and be grateful. Tomorrow, I'll return to regularly-scheduled programming when I post Hayden's latest blood counts.

Get a tissue...here's the link

Click here to go to Shaw tv: http://start.shaw.ca/Start/enCA/Local+Content/Manitoba/Winnipeg. Scroll down and look for 'Rainbow Society - Hayden's Story'. It's currently listed under Thursday.

Tip:
- use Internet Explorer
- if you don't already have Windows Media Player installed, you may be prompted to download it

Get comfortable...this is a long one

A big thank you to everyone who supported the Children's Hospital radiothon. Unfortunatley, none of my family / friends won a jersey, but we raised a little more than $100,000 through the EISI matching program. In total, the radiothon generated $628,000. That will go a long way for families who rely on programs at the Children's Hospital. Once again, thanks.

Along those lines, BIG kudos to Christa. She shaved a minute off last year's time and came in 3rd for fundraising in last Sunday's marathon. With your help, she collected $3,300 for the Canadian Cancer Society - woo hoo! Hayden excitedly waited near the end and jumped in to finish the race with her. The marathon may not have been easy for Christa, but the finish was awesome!

Speaking of Hayden...

Tom took H back to the clinic on Tuesday for a blood test. His neutrophil count was 1.21 so back on chemo, at 50% (again). The next test is May 18 - we're expecting he'll still be in the zone...then what? Dr. Stoffman may try bumping up some of the chemo med doses. More to come on that.

Last Friday, we attended a fundraising dinner for the Rainbow Society. Every year, they kick off the live auction with a video to show how generous bids make a difference in the lives of families with sick kids. That video was about us - Shaw TV produced it. When it hit the big screen at the convention center, all I could think was 'man, I look fat' but I'm told there wasn't a dry eye in the room. Hayden giggled at his part and again when they asked his Dad to come to the podium and say a few words (I might have giggled a little then too...and a lot afterward).

I didn't know this but they auction off upcoming wish trips, among other things. That got me to thinking and I asked Grace, the executive director, if she could introduce us to the people who 'won' last year's bid for Hayden's trip...and she did. That was definitely the highlight of the evening. They were thrilled to meet Hayden and learn about his trip. We were thrilled to personally thank them for supporting the Rainbow Society. For the rest of the evening, Hayden was treated like a little celebrity...it was soooo cute.

The video aired on Shaw TV today. If you missed it or aren't a subscriber, you can view it from their Web site. I'll publish the link in this blog when it's posted.

And now, as we movie-industry-like-type folks say, that's a wrap.

Children's Hospital Radiothon - triple your donation

It's that time again...the Children's Hospital Radiothon is this week. My company is once again matching donations (both my boss and EISI) so your amount will triple!

Starting today, you can call in or donate online:

• Call 953-KIDS (953-5437) between now and Thursday evening and tell them that you're part of the EISI Corporate Matching Program
• Visit www.goodbear.mb.ca/donation.aspx and, in the dropdown box called 'Designate this donation to', select 'EISI Corporte Match'

As incentive, my boss is raffling off 3 official Sidney Crosby red Olympic jerseys. If you make a donation, shoot me a quick email and I'll make sure you're entered in the draw (cindyanne07@yahoo.ca).

BTW - if you tune-in to QX104 or HOT103 between 6 a.m. and 6 p.m., you may hear clips from recorded interview I did.

Hold up!

That's what he said...Dr. Stoffman, that is. He took one look at the results of Hayden's blood test and put a stop order on his chemo. The good news is that he gets a brief reprieve from the pills that must be taken on an empty stomach (not easy these days). That bad news is that he's, once again, neutropenic (low neutrophil count = compromised immune system). I'd like to say that he gets a reprieve from all pills but he started his 5-day stretch of steroids today. With that comes increased appetite and mood swings. Funny thing though, his appetite didn't go back to normal after last month's 5-day stretch so this should be interesting. As Tom says, 'He's got some butter on him.'

Not a great week for academics either. Hayden missed school on Monday because he wasn't feeling well. He had a clinic appointment this morning and a field trip this afternoon. Then, on Thursday, he'll likely miss some school to shoot a fund-raising video for the Rainbow Society (tried to plan it during lunch...we'll see). We're also helping out with the Children's Hospital radiothon. Lots going on...

Hayden's enjoying his skating lessons and still pumped to play hockey this Fall. He's never had a stick on the ice though, so we enrolled him in a summer hockey camp. Plus, he's still doing tae-kwon-do twice a week. All in all, things are good. Even though we are having troubles dialing-in his chemo doses, we are very grateful to have an active, happy kid.