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.

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.

To borrow a line from Monsters Inc...

Hayden was in the zone today...put up some big numbers.

1.3 to be exact. His neutrophil count is right in the middle of the optimal range (1 - 1.5) so there's no change to his chemo doses. To officially acknowledge his immune system's resurgence, we went to Toys 'r Us to spend a gift card that was burning a hole in his pocket. It was kind of cute...when he talked to his grandma on the phone she asked why he went shopping. He simply replied, "Because I can."

This is our month to skip the lumbar puncture so no PDU appointment until May. Our next clinic visit is April 20.

Tomorrow's a big day - he starts skating lessons. Yep, one step closer to the NHL.

A sure sign of spring

Christa is once again training hard for the Winnipeg Police Service Half Marathon in Hayden's honour (benefits the Canadian Cancer Society). Pretty impressive, huh? I should add that she also has a full-time career and is a full-time wife and mom...and a great friend. And she's already surpassed last year's fundraising efforts and is on her way to raising the bar, once again. Go Christa!

If you'd like to sponsor Christa, you can make a tax-deductible donation here:
https://www.runningroom.com/dashboard/donations/index.php?raceId=4980&eventId=16577&memberId=VTVXYQ5iVjhWOQQwAz0%3D&item=8&guest=1.

Good luck with your training, Christa! Hope the wind's at your back.

Here's a pic from last year's marathon...remember this kid?

Well, look at him now...

Hayden with Olympic fever


Looking forward to spring break this week and no appointments...hope Grandma's ready for the steroid boy (heheheh).

Blood, chess, and years

Busy times...it started with an 8:30 a.m. blood test at the CancerCare Clinic, followed by an appointment with Dr. Stoffman. Hayden's neutrophil count is still on the low side at .77 but, seeing as it's slowly climbing, we're staying the course on his chemo doses.

From there we blasted over to St. George school where Hayden slid into a seat just in time for the first chess game. There was a row of local celebrities - he played a cop and lost. After that, he went on to win 12 games. I gotta say, it's very cool to see a gym packed with that many elementary-school-aged kids...sitting...quietly...thinking. Whoa.

Tomorrow is Hayden's monthly spinal, followed by 5 days of steroids. It's also the day of his belt test for tae kwon do. And one other thing...tomorrow he is exactly 2 years away from being chemo free. March 24, 2012. That's it. We're done.

Hello? Is this thing on?

Hello-lo-lo-lo. Anyone out there? It's been a while...

Some were subtle, others less so, but I got the hints. Sorry for the lapse in updates. I do appreciate that you're interested and supportive of Hayden's battle so I apologize. Part of the reason is that...there's so damn much, I don't know where to start.

California was a blast! We started in Palm Desert (near Palm Springs), where we mostly just hung out poolside for 4 days. It was also a US long weekend so there were lots of families at the resort - Hayden played with new-found friends and mom and dad drank margaritas. Very relaxing. Unlike H's wish trip, where we stayed at a resort for kids fighting life-threatening illnesses, no one here knew about, talked about, or even thought about cancer. Hayden looked like any other carefree child. In fact, we forgot about it too...until Hayden barthed and spiked a fever (doh!). No worries, though, a quick call to an oncologist back home put our fears to rest and we all carried on. There was one other episode when an older girl asked Hayden about the round lump in his chest (Iron Man port)...he casually replied it was for cancer medicine and swam on while her fully-open mouth collected pool water.


Hayden and his friends in the pool (Palm Desert).


Hayden coming down the water slide (Palm Desert).

Then, we drove to La Jolla (near San Diego) where I attended a conference and the boys played tourist. The very first order of business, though, was LegoLand. Hayden is a big Star Wars lego fan so he really enjoyed this day. It is pretty amazing what they can do with lego!


Hayden and Lego Chewie



Bionicle blade


Oh yes they did do Indiana Jones in lego


Batman and Hayden (Robin who?)


The Las LegoLand strip


More stuff to pack

You can't tell from these pics but, man, does this boy have curls now. Even people who didn't know he had straight hair at one time will comment on his locks. I must say, he looks very healthy with a full head of hair, a bit of meat on his bones, and a tan.

We also hit the San Diego Zoo and the boys drove up to Knott's Berry Farm to get their coaster fix. Hayden was feeling well through nearly all of it, but he got sick again in the Denver airport on the way home. For most kids, this would be a traumatic experience, but it ain't his first rodeo. We just quietly left the restaurant and slipped around a pillar where there was a garbage can. Ten minutes later he was eating lunch and playing DS. No problem.

We returned on a Sunday and got right back to business with a blood test and dr. appointment on Tuesday and a spinal on Wednesday. Plus he started his monthly 5-day pulse of steroids. Welcome home! One of his chemo meds was increased to 75% so we're keeping an eye on those counts. His neutrophils were at .62 last week. It's low but he had a bit of a cold so we'll see what happens next Tuesday.

And, in closing, a Hayden story:
I was making his lunch one morning - just finished cutting the green tops off the strawberries. I didn't even notice that he was shooting imaginary lasers at me from the other side of the island (pi-choo, pi-choo). I turned to put something away and he ducked, as though I was coming at him. As he cautiously peered over the top of the counter he said, 'I thought you were going to hit me with those crackers'. I grabbed the first thing I saw and replied, 'No, but I could get you with this strawberry'. 'Oh yeah', says my little boy, 'then I'll get the whoopin' cream!'

Now, I've been taking this he-looks-just-like-his-dad crap for 8 years so when he clearly displays traits from his mama...well, I just gotta laugh.

1.17

Woo hoo! Hayden's neutrophil count hit the optimal range. Good timing too because we are preparing for a trip to sunny California. Legoland here we come!

Get a haircut

First cut for the fresh-from-the-brain hair is this week. Wonder if those crazy curls will stick around?

No clinic today. Hayden's blood counts are likely up, due to the 5-day pulse of steroids he just finished, so it wouldn't be a true test. We'll give it another week and see where he's at.

Hayden's keeping busy with tae-kwon-do twice a week, archery on Saturdays (1 class left), and we usually do public skating on Sundays. He's been out on the snow scoot a few times and loves it. Good times, indeed.

No patience

I'm not a patient person. It's just not my thing...but I feel that I've been pretty good during almost 14 months of neutropenia. OK, not good, but not horrible. Well, that's over. I'm sick of it. I WANT SOME DAMN NEUTROPHILS!!!!

Seriously! What does it take to get some white blood cells around here?! UGHHHH!

Ya know...I knew this would happen. Hayden smiled yesterday and I noticed his gums were bright pink and inflamed. Yep, that's a sure sign of neutropenia on him. So I wasn't surprised when today's blood test revealed that he's at 0.55. Why? Why? Why? Because he's fighting a cold or something? Who knows....so done.

mreh.

I'm thinking of a #...

...between 1 and 1.5.

That's the ideal neutrophil range for Hayden. He's at 1.4. Yay! Awesome because: 1) he has an immune system; 2) we don't have to adjust his chemo doses; and 3) we don't have to go to clinic next week.

Hayden went to tae-kwon-do class on Monday. It must be a day to hit the restart button because it was exactly a year ago that he returned to grade 2. I know that because I went back and read old blogs - yikes. People used to say, 'I don't know how you do it' and I remember thinking how the complete lack of choice rendered the remark absolutely pointless. But, looking back...I don't know how we did it. It was a nightmare for all of us - many of you readers and certainly all of Hayden's family. I'm not going to say that we're out of the woods yet, but there's no denying that things are immeasurably better than a year ago.

And now the young lad wants to play hockey. Maybe his buddy Dane can can give him some pointers. Dane was diagnosed with leukemia shortly after Hayden and he's playing 8A1 hockey...most impressive. So, we got Hayden new skates and we've been out at St. Vital arena with Jesse and family once so far (also friends through CancerCare) and we're hitting the rink again this Sunday. Hayden didn't skate at all last year so he's got some catching up to do. But I'd say his mobility is at about 90% so the rest will likely come with a little work. And he's still in archery.

As the archer dudes (and Grandpa) say...until next time, tight lines and straight shooting.

PS: my sincerest apologies to all of the snowmobilers (which now includes my son) for wishing for warm weather...who knew? Even deeper apologies for loving this heat wave.

New Moon

Just got back from seeing New Moon - loved it! Hayden and I have been reading the Twilight series books (OK, I'm reading, he's listening) so I surprised him with a movie date. As you might have guessed, his blood counts are up so public outings are finally allowed.

You might find it odd that I would read these books to an 8-year-old...it's kind of shocking to me too. When the first movie came out on DVD, I thought it was inappropriate and didn't allow him to see it but, of course, that only made it more desirable to Hayden. He, along with the support of most of his cousins, eventually wore me down and he became a big fan. Then I bought the book as a way to pass time in the hospital, and it worked exceptionally well. The reading seemed to soothe him when he was feeling crappy and the story took him away from whatever was going on at the time. He begged for more pages and I read aloud until my voice cracked. Plus, I censored as I read so we tore through the first 3 books. The movies present a censorship challenge but I must say, I couldn't have enjoyed it more. Being in the theater with him, watching him see the familiar story unfold, putting a visual to months of reading...it was great. I suspect, though, that these books will always conjur bittersweet memories for me.

We'll be back at the clinic on Tuesday for another blood test. Dr. Stoffman wants to see if last week's steroid pulse pushed up his counts or if he's really making neutrophils on his own free will. Hopefully his ANC is between 1 and 1.5 so we can stop adjusting the chemo doses and get on with life with an immune system and without weekly clinic visits.

If the weather warms up, Hayden will be snowmobiling around the yard this weekend. Did I mention he got a Snow Scoot for Christmas? He loves it. I'm sure we're all hoping the weatherman is right.