Wednesday, December 23, 2009

Dec 23, Part I - "A Beautiful Life"

It is two days before Christmas and I have just put all three of my children to bed. Logically I know I should be right behind them, but tonight my heart is in charge. It is a very sad day as we just learned earlier tonight that Kendra McBain, the beautiful young woman I wrote about a few months ago, has lost her hard fought battle with cancer.
Kendra turned 18 just two months ago. She was diagnosed with an extremely rare form of cancer when she was 15. For the past three years, she and her family have waged a war against this terrible disease. It is so very unfortunate that a cure did not exist for the sarcoma that invaded her body.
Kendra had a maturity beyond her years. In the midst of her personal battle, she organized "Kendra's Walk for Kids" this past May. Through her efforts, over $100,000 was raised to renovate the teen's room at the Cancer Clinic. Apparently the teens haven't been all that keen on sharing their space with toddlers and school-age "punks" like our Dane and I can't say as I blame them. The renovations are currently underway and I understand that Kendra was receiving regular photo updates of this wonderful work in progress.
Kendra was kind, compassionate and from what I saw, very positive in the face of adversity. Although I understand that "punks" are not always high on her list, she seemed to bond with Dane. They shared stories during chemo treatments and on a particularly rough day for Dane, she put her new two pound puppy in his lap to ease his stress during an IV insertion. The puppy and Dane never moved for an hour and we all talked like we'd known one another for years. Even when she knew near the end there was no cure for her cancer, she was bright and forthright.
Although you don't know Kendra except through my description, please believe me when I tell you she is a symbol of many important life messages. Our family is privileged to have known her and although I hate cancer, I am thankful she came into our lives. Dane and Ashley shed many tears tonight when they heard she died, however only as children do, they were able to park their sadness. I suspect though there will be many moments over the next little while when one or the other talks about Kendra.
For our family, it has been exactly a year since Dane first showed signs of being ill. Although I try not to think about it too much, it is very evident looking back now that he was so not himself last December. He really just went through the motions during the holidays because that's all his little body could handle. This Christmas he is "fired up" - at home, at the rink, at friends, etc.. And although his attitude still drives us over the edge at times, we are so very grateful his quality of life is back.
If it hasn't become evident yet, I am writing tonight because I need to. It's my therapy once again, as it was in the early days of Dane's journey and at the very anxious times in his treatment. And for those individuals who know me "like a book", you will read between the lines and realize this is a very hard day. Hard because I am the mother of a child with cancer and as much as I can rationalize that leukemia is so very treatable and Dane should never relapse, I would be lying to say losing Kendra isn't traumatic. Hard also because I am a mother who has grieved the passing of a child and that is a heartache that cannot be understood unless you have walked that path. Hard because even though we said good-bye to Cole long before we ever wanted to, we did not really know him like we do Dane, Ashley and Clare and I can't imagine the anguish that Kendra's parents and brother are feeling right now. So hard because I wish I could DO something for the McBain's that is more productive than banging away on my keyboard, but I know that although they are likely surrounded by loved ones right now, this is a journey they ultimately have to make very much on their own. So very hard because embarking on parenthood is a leap of faith and although we hope with all our hearts that our children will be healthy, this is not always the case. Kendra's parents had the same hopes and dreams for their special daughter that we all do for all our children.
As I close Part I, I do so with a story from last January when I was still "reeling" from Dane's diagnosis. It was late at night and I was restless so I sat down and wrote. I wrote a letter to a FP columnist about Dane and our family. In the moment, I really didn't know exactly why I was writing him but it was something I just needed to do. He contacted me right away and was going to publish our story. During our back and forth correspondence, I told him I was ok with the story being told, however I would never want people to read it and feel that I thought we were the only people facing adversity or worse, seeking their pity. Some time went by and he never wrote the column. A few months ago I made contact with him for another reason and told him I appreciated that he never wrote the story. Just knowing I could write to him had been enough for me. I was able to say out loud that "this is a tough, lonely walk" but we were "so thankful we had so many wonderful people supporting us" and we asked that those who believe in a higher power "say a prayer for Dane because we really needed a good outcome this time around". My mom knew about my letter and recently she commented that it was fate that he kept our story private, because it was likely meant to come out as positive as it did in the CCMB Foundation campaign. The Foundation's "ask" for us to be involved came out of the blue and it has truly been a wonderful experience for our family. I share this story because for me it shows how far we have all come this past year. At the beginning I could have jumped out of my skin and shouted at the world. And although I knew we were not alone, I was very lonely. So even though I still have these thoughts and feelings, they don't dominate my days and that in my view is progress.
Thank you for your patience tonight and I hope that most of you don't read this until after Christmas. I'm starting to unwind a bit now so after I post a very quick Part II, I will call it a night.
From our entire family, our heartfelt wishes for a wonderful holiday season.

Warm regards - Janie and Dirk

Saturday, December 12, 2009

"Crazy time of year"

Hello everyone,

My apologies for the lengthy delay in posting this update, life has been crazy busy the past few weeks. What a difference a few months makes though, because if I'd gone this long in between blogs earlier this year I would have had many emails asking "is everything ok"? Now folks realize my "tardiness" is due to our activities and not Dane's health.

I've got quite a bit of ground to cover so I'll dive right in ...

Medical "stuff"

The best news, Dane has been feeling great these past few weeks. He takes his meds at home like a trooper and if we ever forget a dose, he reminds us. On Monday he completed cycle 1 of too many cycles to count over the next 2 1/2 years. He started cycle 2 on Wednesday. This is a heavy week for meds as he had his once every three months spinal tap, plus IV chemo and his five day steroid pulse. He looked very tired on Thursday but has since bounced back. His hemoglobin continues to rise - it was up to 129 on Tuesday. This is a far cry from the days when it hovered in the 80/90 range. There is one downside though and I mentioned it to his oncologist. We see a corresponding increase in Dane "bad" attitude the higher his hemoglobin gets. Hhmmm, if only we could solve this dilemma!

CancerCare Manitoba Foundation Holiday Appeal "stuff"

Whether Manitobans like it or not, we Hantschers are everywhere these days. We've been on TV, in the newspaper and in mailboxes. I taped a radio spot this past Monday so starting next week we'll also be on CJOB (Dirk said he can't believe he's going to have to listen to my voice on his peaceful drive to/from work every day). The CancerCare MB Foundation has indicated the response to the campaign has been very positive thus far so that makes it all worthwhile. If you live out of province and can't watch CTV or you just haven't seen it here yet, I've attached the video file for your viewing - just hit play. As I reported a few weeks back, Dane was also the Sports Star of the week in late November. If you missed that piece, log onto CTV Winnipeg, click sports and then sports star. He will be the third story from the top. The piece is excellent - Dirk, Dane and the Sports Director all did a wonderful job.

Sister "stuff"

Dane's big and little sisters are doing pretty well these days. Ashley is skating up a storm at ringette. She netted five goals in our last game and has developed quite the natural skating stride. She's VERY anxious for Christmas and we will all be thankful once the present suspense is over! Clare continues to be a wonderful and happy baby, however these past few days have been pretty challenging because she has a bad cold. She's been pretty clingy (a relative term for Clare) and not sleeping well at all (like her newborn days). I've had three nights of being up every hour or two so I'm whooped. She seems to be feeling a tad better today so I'm hopeful we will all get some much needed rest tonight. She was seven months yesterday and I'll post a few new photos in my next entry. Her weight gain is slowing down, however she has surpassed the twenty pound mark already. She is as big at seven months as Ash & Dane were at a year!

Hockey "stuff"

As I've been typing, Dirk has been phoning me every 20 minutes with updates on Dane's game. They were playing the #1 team today and usually I'd be a loud fan but I didn't want to take Clare out in this brutal weather with her cold. It was a "barn-burner" ... 3-3 after the 1st period; 8-6 for us after 2; and an 11-9 victory for Dane's team when it was all said and done. It was killing me to know I was missing such a great game - yikes, he is only 8, what will I do in a few years? He's playing with a great group of kids and they are well coached. After today they are sporting a 7-1-1 record and are tied for first in their league. He is LOVING hockey this year and that is so very rewarding for all of us.

For next time "stuff"

We are quickly closing in on the one year "anniversary" of Dane's illness and diagnosis. In my next entry I will reflect on how it feels to hit this milestone.

Take care everyone and don't let the December madness get the best of you.

Janie and Dirk

Monday, November 23, 2009

"Sports Star - Tuesday November 24"

Hello everyone,
I'm frantically sending out emails and posting this blog entry because we just found out earlier this evening that Dane's "Sports Star of the Week" feature will be on CTV news TOMORROW - Tuesday November 24. It will apparently be on three times - on the lunch hour newscast, at 6:00 pm and at 11:30 pm. The feature will also be posted on CTV's website in case you miss the news.
Dirk was with Dane for the interview portion tonight and it sounds like our 8 year old was a tad reluctant. So if his answers are pretty limited and he looks like he is hiding a bit under his hoodie, so be it. By Dirk's description, it seems we are lucky he got in front of the camera at all. I'm sure I'll get reminded about "how I made him do this" many times over in the days, weeks, months and years to come!!
Hope you enjoy the feature - Janie and Dirk

Thursday, November 19, 2009

"Have you seen Dane?"

Before you panic, we haven't lost Dane. "Have you seen Dane?" is my play on words for this week ... yep, he is officially a celebrity.
Starting today the direct mail letter from CancerCare Manitoba is arriving in Manitobans' mailboxes. The letter is being sent to about 40,000 households and we know it's out there because Canada Post delivered ours today. It seemed fitting that Dane was the one who opened this one piece of mail tonight. Below is the link to the CancerCare Manitoba Foundation website, specifically "Dane's Story" (this is the same copy as in the direct mail letter).
Starting this Saturday, a piece will also be running in the WFP for about six weeks. I find it to be a striking ad - the picture of Dane is a real close-up and definitely elicits emotion.
The 30 second TV spot is "in the can" (journalist language) and should start running on CTV by the middle of next week. Ashley and Dane did a wonderful job at the rink and performing a spinal tap on the puppet at CancerCare with their favorite Child Life Specialist. They definitely look like future doctors or scientists. There will also be a 60 second spot on the Foundation's website and I will post both links once they are available.
This entire experience has been a lot of things to our family. Although Dane was resistant, he seems to be quite pleased with the finished products and even went so far as to admit he likes the pictures they chose of him. The team working on this project went out of their way to include Ashley and that was wonderful as she has often felt like the odd person out during this incredibly tough ten month journey. Clare has been the "gerber" baby and her mild mannered personality has been the topic of much conversation. Although Dirk has had more of a supporting role, he has been very engaged in the whole process and I very much appreciate his patience. For me this undertaking was more "therapy". A chance to return to my journalist roots while being altruistic and another reminder that when life gives you BIG, FAT lemons, you work damn hard to turn them into a meaningful pitcher of lemonade.
The "bonus" of this project is the CTV producer nominated Dane to be "Sports Star of the Week". The station is taking video footage of his game tomorrow night and then interviewing he and Dirk next Monday. I don't know exactly when it will run but again I will keep folks posted via the blog. He's #19 (Big Joe Thornton's #).
Dane is on his off-week for appointments. Everything went smoothly last Tuesday and all his blood counts are holding. He's still on 100% of the chemo dosages and goes back to the Clinic next Tuesday for his bi-weekly blood work.
Until next time, take care ... Janie and Dirk

Friday, November 6, 2009

"Lights, Camera and Action"



It's the end of what has been a busy week so just a short blog update before calling it a night.

Here's a snapshot of our "happenings" ...

Trick 'r' Treat

All we can say is WOW do the staff at Cancer Care Manitoba know how to spoil a bunch of well-deserving kids! Ashley and Dane had an absolute blast trick 'r' treating last Friday morning. There were many great costumes, friendly faces and best of all a scale at the end to weigh the nearly ten pounds of goodies in their candy bags. This was a trial run for the real deal last Saturday night and they were not disappointed. They each went out with friends (and parents in tow) and collected quite the haul. Dane had no shortage of energy to run door to door and he now has enough chocolate to last an entire year! It was great that he was feeling well and could enjoy the holiday like all his peers. Hope you enjoy the post costume picture. Dane was a Wii remote (imagine that), Ashley was an art palette and have you ever seen a cuter Hershey's Kiss?

Boosting the US Economy

In need of a little get away and some new duds for our ever growing Clare (19 lbs and rising as she closes in on the six month mark next week), I escaped to Fargo and GF with my mom and Clare for a couple of days earlier this week. It was a good break and except for a couple of sleepovers with friends, it was the first time since Dane was diagnosed in early January that I have been away from him. I was a tad anxious when we first left, but I purposefully tried not to think too much about home while shopping til I dropped. The sky did not fall while I was gone and this is encouraging for future potential get aways.

Lights, Camera and Action

I think Dane has come to realize that agreeing to be the face of Cancer Care Manitoba's campaign is a lot more work than he could have imagined. In typical eight year style he not-so-gently reminded me in front of the consultant and photographer that "I made him do this - he never wanted to in the first place". He then asked if he could have a chocolate bar when the photo shoot was done and because sometimes bribery is effective, we caved! Seriously, we've all been busy with photo and video shoots at the house and at the hockey rink. The direct mail portion of the campaign is on its way to the printers and should be hitting mail boxes in a couple of weeks. We still have one more video shoot for the piece that will run on CTV and that will be filmed the week of November 16. We'll keep you posted on the details and will likely put a link to it on the blog once it's ready.

We didn't have any appointments this week and Dane continues to feel really good. He has his once a month IV chemo next Tuesday which also means the start of his steroid boost. This is the beginning of the third and last month of his first 84 day Maintenance cycle and knock on wood, we hope the many, many cycles to come run this smoothly. Now if only we could conquer his eight year old attitude!

Until next week, take care - Janie and Dirk

Thursday, October 29, 2009

"A New Year"





Ok, so before you think I've really lost it due to months of sleep deprivation, I will reassure you I do not think it is January and the start of a new calendar year. Rather my "New Year" title today refers to it being a brand new year for Dane - he turned eight on October 18. You will have to bear with my bit of negativity here, but I will say loud and clear seven was NOT a lucky year for our special son. Rest assured if and when we return to Vegas, we will NEVER bet that number again!

Dane had an awesome birthday celebration. I say celebration versus day because his partying lasted nearly two weeks. He definitely deserved the special attention and here is a run-down of all the festivities ...

- Birthday dinner with grandma & grandpa complete with his new Wii remote (thank goodness or he'd be looking to pilfer from the cancer funds) and some cash to help buy a stand-up basketball net next spring
- A bowling party with several of his school and hockey friends. It was his pick and the two hours was more than enough time for mom & dad
- His breakfast of choice on his actual b-day - chocolate chip pancakes and opening his "loot"
- Saving the best for last, four tickets to the Bomber game on Sunday October 18 where Dane was the "kid" of the game (hence the picture above). He was the centre of attention before the game ... they announced his name, sang him happy b-day over the PA, he ran onto the field out of the inflatable football helmet, he "hung" with Buzz & Boomer and received a Doug Brown bomber jersey. The Bombers played a stinker of a game, but that didn't seem to damper his spirits.

Dane said his birthday was "the best day of his life". That was a real pick me-up for Dirk and I and provided a sense of renewed optimism as we begin year eight. We were more than happy to kick year seven to the curb and start fresh. With all that is happening in his world right now - 8A1 hockey, planning his "Wish" trip to hopefully meet big Joe T. in San Jose and of course, feeling so much better - life is pretty darn good.

I think for the most part Dane doesn't think too much about having leukemia, although it's on his radar every now and again. Take earlier this week for instance when we battled the crowds and went for our H1N1 flu shots. Given Dane's condition we are at the top of the priority list and fortunately they fast tracked us so we only waited a few minutes vs. the over two hours it could have been. Ashley and Dane were real troopers with the needles but rest assured they were NOT happy when I told them we have to go back in three weeks for a booster. Dane has also had the seasonal flu shot so he'll be very relieved when these "pokes" are done.

We were at the Clinic on Tuesday for his twice monthly blood work and all is good. For the first time since he was diagnosed in January, his hemoglobin (gives him energy) is in the normal range. This is great news and bodes well for more speed and stamina on the hockey rink. His neutrophils were 1.57 so we keep going with 100% dosages of the chemo drugs we administer at home on a daily and weekly basis. A reliable source has told us Halloween & X-mas are the two best days at the Clinic so we are making a special trip there tomorrow morning for trick 'r' treating and a pizza lunch. This is a first for us - a visit to the Clinic when we don't have an appointment! His next scheduled IV chemo and steroid boost is November 9 so we have almost two weeks without too many meds.

As a family we are generally busy these days. Ringette for Ashley (first league game is this Sunday) ... hockey for Dane (they made it to the playoffs in the pre-season tourney but lost last night in the semi-finals) ... eating, playing and exploring for Clare (she has learned to roll-over and sit-up pretty much on her own as shown in photo with big sis & bro) ... preparing for the haunted holiday this coming Saturday ... and working on the CancerCare Manitoba Holiday Appeal Campaign.
We hope all is well in your world.

Take care - Janie and Dirk

Thursday, October 15, 2009

"The Many Faces of Childhood Cancer"

From the start of Dane's journey, it has been evident to me that childhood cancer knows no boundaries. It strikes children at random and has no regard for socioeconomic class, gender, age, geography or family status. All a person needs to do is spend one day at the Children's Clinic at CancerCare Manitoba to see this is the reality. At times this reality has really bothered me because I feel such empathy for families that appear to likely be struggling on a day-to-day basis, never mind the added complication of a child with a life threatening illness. Oddly enough other days this reality has provided me with comfort because I know that regardless of who we are and where we come from, at the Cancer Clinic we are a community. Week after week we get to know each other a little better - we learn each others names, we share stories about how our children were diagnosed and we talk about how they are managing the treatments. We also laugh, cry and lucky for me, get to share our baby with many eager sets of arms on Tuesdays and Fridays.
This subject is on my mind a great deal right now because one of these faces is really having a hard time. Her story has been in the paper and on TV recently and when I think about Kendra, I get teary. She is a confident, articulate and beautiful 18 year old who has been fighting a rare form of this dreaded disease for three years. Just when she and her family thought the cancer was gone this past May, another tumor appeared. This week she is undergoing special surgery to try to remove another tumor that has been discovered behind her eye. Through all of this, she has remained optimistic and grateful for the life she has led the past 18 years. In May she organized a walk at her high school to raise funds to redo the teen room at the Cancer Clinic and the support was overwhelming - over $130,000 was raised. It's my understanding she is planning a second walk in the months to come. Dane, Clare and I participated in May and we will absolutely be there for the next walk.
I have also been thinking about Dane as a face of childhood cancer because he and subsequently our family have been asked to be involved in the CancerCare Manitoba Foundation's 2009 Holiday Appeal. The Appeal is an annual fundraising campaign and this year Dane's name was put forward as the child who will be featured in direct mail, print and TV spots. We have just begun working on this project with the Foundation and the consultant and although Dane was a tad apprehensive originally, he agreed once I reminded him that he is doing as well as he is because of tremendous research that is funded by generous donors. He did ask if he could "pocket" a few of the proceeds - just enough to buy a new remote for his Wii! Crazy kid!! Good thing Grandma and Grandpa came through with that for his b-day (he turns 8 this Sunday). I will update the status of the campaign in future blogs.
Dane started month two of long-term maintenance on Tuesday so he is not quite as energetic this week as he has been. He gets hit hard the first week with many drugs, including five days of steroids, and we notice it takes a toll on his body and spirit for several days. His blood levels are holding up well and he continues to be at 100% dosages of the various drugs. He should be feeling much better by tomorrow - just in time for his first hockey game of the season and his various birthday festivities. He has a special treat this weekend - he gets to be the "kid" of the game on Sunday when the Bombers play the BC Lions. He will be introduced and run out onto the field prior to the game. So if you are going, please watch for him and hope for good weather!
As I end this entry, I reflect that it was 11 years ago today (October 16) that we said good-bye to our special "little man", Cole Andrew. It's always a hard day but time has helped heal our sadness. Although we miss Cole and who we would have been, we live in the present as much as we can with Ashley, Dane and Clare. Ironically, remembering how awful it was to lose him gives me strength as we fight Dane's leukemia. I know ultimately it's beyond my control, however I refuse to feel that sadness again. It helps me keep my head in a good place - the one where there are no complications or relapses and Dane grows up and has a wonderful life.
Until next time, take care ... Janie and Dirk