"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

"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