Thursday, December 24, 2009

Dec 24 - "What a Christmas Present!"

The "Believe in the Goal" event went off as planned this morning. Dane had NO idea what was in store for him and wondered why I was rushing him into the shower at 10:00 am. He met Todd's family and friends at 11:00. They are all wonderful people and we are so very grateful for what they are doing for Dane and our entire family. It was evident today was bittersweet for them, as it was three years ago this month that Todd passed away.
CTV captured the entire meeting on camera and there will be a story on the 6:00 pm news tonight. It should run during the sportscast, which generally starts around 6:40 or so. We will of course post a link to it on the blog after it airs.
We are in last minute preparations for Christmas Eve dinner tonight with Dirk's family. The kids are very excited but doing a good job of holding it together.
Until next time, take care - Janie and Dirk

Wednesday, December 23, 2009

Dec 23, Part II - "Believing is Magic"

Yes, I am still typing tonight. I promise, this entry will be very short compared to Part I but I have some news I must share quickly.
To make a very long story short, we received a phone call today from the President of the "Believe in the Goal" Foundation. This Foundation was created several years ago by Todd Davison. Like Kendra, Todd battled a rare sarcoma. He lost his personal battle with cancer on December 2, 2006 at the age of 20. He created the "Believe" Foundation to make a difference in the lives of those who continue to battle cancer. One element of the Foundation's work is to provide children with cancer an "NHL Experience". I'm sure you can see where this is going ...
For this year, Dane has been selected as the child who will receive the "NHL Experience". There are still many, many details to be sorted out but something exciting is happening tomorrow. Todd's parents want to tell Dane about the "NHL Experience" as a Christmas present so they are coming to our house at 11:00 am to meet him. Shawn Churchill of CTV is on the Foundation's Board and he is the person who nominated Dane. Of course he was introduced to Dane by the CTV Producer who shot the TV commercial for the CCMB Foundation's campaign. So if there was ever a story about "paying it forward", this is it!
Apparently CTV is coming to our house as well tomorrow as they want to feature this great news on the Christmas Eve newscast. So I will post a quick update tomorrow afternoon advising when it should be airing. And when I'm not so sleep deprived, I will provide more details regarding this wonderful opportunity for Dane. He knows NOTHING about it so tomorrow is going to be quite the day!
Merry Christmas - Janie and Dirk
p.s. There was a short story about Dane in the Winnipeg Sun last Saturday. The link is not being cooperative but if you are interested, just go to the Winnipeg Sun website and search under the heading "Unmelancholy Dane". It should come up right away.

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

Wednesday, September 30, 2009

"We Remember Him"


Sept 29 - Always a tough day for the Kidd/Hantscher families. Eleven years ago yesterday our first child - Cole Andrew - was born at HSC. As we have done every year since 1999, we honoured his special day with a picnic dinner at St. Vital Park and a picture of the kids at a spot close to where Dirk and I took him one warm fall day. Every year is different - last year was particularly tough because it was his 10th birthday and Dane was fixated on the older brother he never got to meet. This year the kids were more pre-occupied and I think had both decided they "didn't want to cry" over Cole quite so much as in the past. I think yesterday was tougher for Dirk because of Dane's health issues - it's hard not to be sad when you are reflecting on one loss in the midst of a serious health issue of another child. The bright spot seemed to be Ms. Clare - Ashley and Dane think she is the best and were delighted to have their baby sister in the annual photo. I think it's a tender shot of the three siblings.
On a more upbeat note, Sept 29 was a rewarding day for both Ashley and Dane. Our Ms. Ashley has turned into quite the little runner and in two cross country meets has placed an impressive 14th (Sept 22) and 8th (Sept 29) out of about 100 grade four girls. She definitely has the build to be a runner - those legs of hers are mighty long (takes after her dad). Yesterday Dane received the email he had been waiting for - he was successful in his attempt to play 8A1 hockey this season. Not too bad for a kid who has been battling the fight of his life the past 9 months! Every ice time he gets stronger and faster and we anticipate this will continue. More importantly is he is ecstatic about the game again. We are seeing a level of enthusiasm we have not witnessed since November 2008 and it is wonderful. Dirk is going to be broke though as many new pieces of equipment were required to start the season. Both kids are now gung-ho to get fancy new hockey and ringette sticks and I told them I wasn't going to be left behind so it will be my turn next!
In terms of Dane's treatment, I don't really have any news to report today. He has not been at the Clinic or Children's Hospital since September 16. We were scheduled to go yesterday, however I have been fighting a wicked cold/virus since last week. To avoid passing my germs onto any of the kids, our appt has been rescheduled to Friday. So far he has been handling the various meds really well. I don't even have one "roid" induced story to share for this month and I'm hopeful this will become the norm for months to come. As much as we all enjoy the humour of his food cravings, the emotional roller-coaster that accompanies "dex" (dexamethasone) is not pretty. So thus far, Maintenance is a much better world than the intense phases of the past eight months.
Until next time, take care ... Janie and Dirk

Thursday, September 17, 2009

"BIG News"












Good evening,

So, with cheeks that look like they are stockpiling nuts for the winter, it's likely not a stretch to figure out one of my "big" references for this week. Yes, at four months Ms. Clare has passed the 16 lb mark and she has the dimples and rolls to prove it! She is almost able to sit up, but I suspect it's because she has a few extra layers around her mid-section that get in the way of her toppling forward! She has started "real" food and I'm hopeful it will improve her not so stellar sleeping habits.

Of course the biggest news this week is Dane has officially started cruise control - aka long-term Maintenance. His neutrophils were up to .87 at his Tuesday visit to the Cancer Clinic, just a bit above the required threshold of .75. The following is a snapshot of Maintenance:

- This is the treatment regime he will be on until May 2012
- Each Maintenance cycle is 84 days (essentially three months)
- On day 1 of each cycle he undergoes a spinal tap
- On day 1, 29 and 57 he receives chemo intravenously
- He is on steroids day 1 - 5, day 29 - 33 and 57 - 61 (referred to as a "boost")
- He takes a specific chemo pill once a week on Tuesdays for the 11 weeks of the 84 day cycle
- Starting day 1 (yesterday) through May 2012 he takes a pill called mercaptapurine every night (this pill is a bit of a nightmare because it has to be taken on an empty stomach and he can't have dairy products within two hours of taking it. So, no milk, cheese, yogurt or ice cream after supper for almost three years)
- He takes antiobiotics every Sat & Sun until May 2012 to prevent infections, eg: pneumonia
- He only goes to the clinic every two weeks for blood work/IVs so the visits are going to be much less frequent (yahoo)!
- Now that he has started Maintenance, there is no stopping for low neutrophil counts. If his counts drop below an acceptable level, the dosages of the pills he takes at home will be adjusted. All spinal taps and IV chemo will proceed whether he is below .75 or not
- His various blood counts should stay much more normal and transfusions are highly unlikely. This is great news as it should mean his hemoglobin and platelets will be just like other kids and that bodes well for his energy level and playing hockey

So, there will be a test now on all the facts above. Are you ready?!?! Just kidding ... (a little sleep deprived humor).

More big news is Dragon Boating for Dane was a HUGE success! Our team Paddlestar Galactica had an amazing weekend. We were in 8th place after our first two races on Saturday which put us in the top of Division 1 (mixed recreational). We raced one final time on Sunday and much to our surprise, posted a great time and wound up finishing 2nd overall out of close to 90 teams! More important than our race placing though was our fundraising for the Canadian Cancer Society (MB division). We are currently the top on-line individual fundraiser with nearly $3200.00 in pledges. Add our in person pledges to that total and we have surpassed $3500.00!!! Thank you again for your generosity and support - every dollar raised goes toward research and we know first hand how significant studies are to help find cures for childhood cancers, particularly leukemia. Dane's illness proved to be a huge inspiration for our entire team and the weekend was capped off in the beer tent at the Forks with Dane on Dirk's shoulders and the crowd chanting "Dane, Dane"!! Our experience this year was physically, mentally and emotionally draining but we wouldn't have missed it for anything. We are already looking forward to 2010 and what we can accomplish as a team.

Until my next entry, take care everyone.

Janie and Dirk

Saturday, September 12, 2009

"We are Paddlestar!"

Good evening,


Well, we paddled our butts off today (literally) and finished second in our first heat and first in our second heat. Our average race time was 2:26 and although we don't know exactly where we are in the standings after today, we know we are near the top of the pack. We have an early afternoon race time tomorrow and the following are our race details ...

Heat P - Lane #3 - Race time approximately 12:30 pm

**could run a bit early or late however today we ran pretty much on schedule**

We had great fan support today - thank you for the wonderful cheering. Our entire family was on hand to watch the race and Dane is particulary keen on being there for the big final tomorrow.

If you can make it out, we would love to see you. The forecast is for a beatiful and sunny 25 degrees - it should be great!

As always, thanks for the support. We have done AMAZING with our fundraising thanks to so many generous donations. As of today we are at close to $3000 - all of which stays in Manitoba and is dedicated to Cancer research! That is a tremendous total and we are so grateful.

Good night - we must rest so we can give it our all one final time tomorrow.

Take care - Janie and Dirk

Tuesday, September 8, 2009

"Ready, Set .... Go???"


Good evening,

If it hasn't become too obvious after eight months of writing this blog, we journalist types love headlines. Looking back, I must have really been in survival mode in January when I started the blog because it took me a few entries to start getting creative. Now I lie awake at night planning my next big headline (OK, I don't lie awake very long given I know it's only going to be a matter of a few hours before I'm up again to feed Ms. Clare)! So this week's entry is "Ready, Set .... Go???" and it refers to a few happenings in our world right now. They are ...

Was "Murphy" at work again today?

Of course, "Murphy" is "Murphy's Law" and he took a break today. Dane was not ready to start long-term Maintenance so the great news is he gets to start school with his peers tomorrow morning and attend his 4x4 hockey camp for a week "med" free. His neutrophils jumped considerably from last week (they were .17 last Tuesday and .59 today). He just needs to get to .75 and the doctor is pretty sure he'll be there next week. His platelets are not an issue, they have climbed to 234, a major increase from 66 last week. Dane's oncologist is likely starting to get a bit tired of my sense of humour, as I told her flat out today we didn't want Dane to be ready (for once) but figured "Murphy" would likely rear his head. When she presented me with his results, she said "you got your wish - he's not quite ready". There is a downside to him not being ready though and that is his Cancer Clinic buddy Hayden is ready to start tomorrow so they will now be one week apart. It would have been great to have their treatments match up, but no worries, we'll find reasons to connect even if it's not at the Clinic. He is appointment free until Tuesday and given we have a crazy week ahead (for reasons I will explain below), that's a welcome break. So, in the case of his treatment, it's a "no-go".

It's the Most Wonderful Time of the Year

If you are a parent of school age children and you've seen the creative Staples commercial with the dad pulling his kids on a couch that doubles for a sleigh and the song "It's the Most Wonderful Time of the Year" playing in the background, you'll know where this is going. School starts tomorrow (not that I'm excited or anything ...)!!! It's been a long summer and given everything we've been juggling - Dane's illness, doctor's appts, Ashley's needs and Ms. Clare's appetite, we are all ready for some structure. It will do Ash and Dane a world of good to spend less quality time together and mix more with their peers. I'm also looking forward to giving Clare a bit more one-on-one attention and taking care of tasks around the house. So, start the engines because at 9:00 am tomorrow, school's a "go".

They Shoot, They Score

Yep, hockey and ringette are in full-swing. Ashley has had a couple of practices already and Dane started tonight. It's his first time on the ice in a formal practice since his diagnosis. Under the circumstances he did great, however as his mom & dad, we know he's a few steps behind where he was last year. We are hoping that with each ice time, he regains his confidence and his love of the game. He really seemed to enjoy himself and we told him many times we were proud of his efforts and attitude. And here is a bit of perspective ... another hockey dad who's son has cancer said really it's a miracle he's back out there after just finishing eight months of hard-core treatment. So, here we "go" for what we hope will be seven uninterrupted months of hockey and ringette.

Dragon Boating for Dane!

We are in the home-stretch before our big dragon boat races. As I indicated in an earlier blog entry, below are our race times for this Saturday's heats ...

HEAT O - Lane 1 - Race time approximately 1:15 pm Saturday Sept 12

HEAT NN - Lane 3 - Race time approximately 2:55 pm Saturday Sept 12

*** These times are approximate and we could run a bit ahead or behind ***

We won't know our final race time on Sunday after late Saturday, but I will post the information as soon as I get it. We would love to have you on the route or at the finish line to cheer us on. It's a crazy, adrenaline rush for 2.5 minutes but worth every ounce of energy. Our team is PaddleStar Galactica and we have bright blue shirts.
We continue to climb the ladder for fundraising (currently #2 online and closing quickly on #1)and if you are interested in pledging our team, please follow the instructions I posted in the August 17 update. Your support is greatly appreciated and truly "going" to a great cause - much needed cancer research.

We hope your family survives the September craziness. Until next time, take care everyone.

Janie and Dirk

p.s. The photo is the kids five minutes before leaving PL this past Sunday after four spectacular days. It was a great way to end the summer!

Wednesday, September 2, 2009

"Second chance at summer"

Hello everyone,
Well, this is definitely more like it, even if it is September 2! Dane is feeling much better post transfusion so we are going to enjoy this "second chance at summer" for the next few days before the fall/school activities kick into high gear.
Although his neutrophils remain pretty low (.17), Dane's platelets and hemoglobin have rebounded to nearly 70 and 100 respectively. As such, his color and energy level are really good and they will continue to improve as he has not had any meds in 10 days. He had his weekly check-up yesterday and his oncologist can tell by his other blood results that his neutrophils should start to increase soon. As was the case with all the other phases, he needs to be at .75 and 75 platelets to start long-term Maintenance. We don't think he will be ready next Tuesday, but we have been surprised before. This is the one time when we would appreciate a delay, otherwise he'll be having his once every three months spinal tap next Wednesday, which happens to be the first day of classes. We would really like him to start school normally like all the other kids and not show up at lunch and after a sedation procedure. However, we know we don't control the blood results so we'll just wait and see what next Tuesday brings.
Dane's doctor has given him the ok to play hockey this winter and he is very excited about hitting the ice. We have been outfitting he and Ashley the past couple of days as ringette and hockey camps are in full-swing. Ashley started yesterday and Dane gets going next Tuesday (another reason to hope for a week's delay).
Our Clare is nearing the four month mark (Sept 11) and is now over 15 lbs. She is full of smiles and chuckles and we are all enjoying her many expressions.
Until next week, take care and enjoy the long weekend.
Janie and Dirk

Friday, August 28, 2009

"Celebrate - with caution - Part II"

The quick Friday night "Celebrate - with caution - Part II" update ...


Dane's blood counts dropped a bit too much between Tuesday and today so a platelet and red blood cell transfusion was required to stabilize his blood situation. Both levels were on the bubble, however given he was bruising very easily and we were on the verge of a weekend, the doctor and I agreed some help with his blood was a good idea. As was the case in April, he had an allergic reaction to the platelets, specifically a stomach ache and hives. The doctor said some people react to the proteins in the platelets and now that he has reacted both times, it's pretty safe to say he's one of those people. We are hoping he will never need platelets again when he's in Maintenance so today may have been our last blood allergic reaction experience. It was uncomfortable for him but he managed pretty well with some benadryl and morphine. Before he received the platelets, his count was 12 and after it was 66 (well out of the "danger" zone). His hemoglobin was 75 prior to but we don't know what it was after the transfusion because a follow-up test wasn't done. However, his color is much better already and he has more spring in his step tonight than earlier today.

Transfusion days are VERY long - we were at the Cancer Clinic from 9:00 am until nearly 6:00 pm. A big thanks to Auntie Jodi who came at lunch to spring Ashley. I am confident she much preferred being spoiled for the afternoon vs. spending nine hours at the clinic. Dirk joined us in the late afternoon so I could stop running back and forth between Clare and Dane. Our not so little Clare gets spoiled on these days because there is no shortage of people interested in holding her. However, most of my helpers are usually gone by early afternoon when their appointments are finished. Now that she is a whopping 15 lbs, the help was great because I was aching a fair bit after a tough Dragon Boat practice last night. Apparently muscles that haven't been worked in a year don't respond too well to practicing our race start many, many times in one night.

Knock on wood for us now, because if Dane can stay "fever" free for the next week or so, we will make it through the entire "hard-core" phase without any rehospitalizations. The doctor had me a bit spooked today, because she mentioned "neutropenic (his level is now only .3), high temp and immediate trip to the ER/ward" a few too many times. I know she is just reinforcing the message, but I did tell her at one point not to jinx us. Yep, I was practicing my diplomacy skills again!

In my haste to finish the Part I entry yesterday, I forgot to mention a couple of celebratory moments from the past week and to post a cool photo taken last Thursday. The entire family had a chance to pose with the Stanley Cup, as Jason Botteril (his family lives in Wildwood Park), is the Asst GM of the Penguins. It was a highlight for all of us, but particularly Dane and Dirk. We made sure out of the numerous hats Dane owns, he donned his Pittsburgh cap that evening. Ashley and Dane each brought a friend to PL last weekend and many fun activities were enjoyed by all.
Take care everyone and enjoy your weekend. If you don't hear from me until mid next week, that's a good sign we are complication free.

Janie and Dirk

Thursday, August 27, 2009

"Celebrate - with caution!"

We did it! After nearly eight months of finger pokes, IVs, spinal taps, leg injections, nasty steroids and many drugs at home, Dane is done the intense phase of his leukemia treatment. We said "goodbye, farewell, au revoir, adios and wiedersehen" (can't forget the German) to Delayed Intensification on Monday night after Dane's last diluted pill. As I've written before, he has done remarkably well since his diagnosis in early January and we are very relieved his journey has been relatively "complication free". It is very hard to watch other families walk a more difficult road though and our thoughts are with his cancer clinic friends who are fighting to get their neutrophils back to normal.
Reaching this milestone is definitely cause for celebration, however we have to exercise caution as Dane's various blood counts are "in the tank" right now. As was to be expected after so many drugs the past several weeks, basically everything is low - white cells, neutrophils, platelets, and hemoglobin. His platelets were only 21 on Tuesday and given his doctor thought they might still be dropping, we have to go back to the Clinic for another blood test and possible transfusion. We can tell his platelets are low because he has tiny bruises on his legs and arms and the dark circles under his eyes are indicative his hemoglobin is not stellar either. So we just wait until tomorrow's appointment for the results and in the meantime, we are doing "low key" activities to pass the time. A trip to PL this weekend is not likely in the cards given he is at increased risk for an infection. If Dane were to run any kind of a temp we would have to high-tail it back to Wpg and the dreaded ER.
Thanks to our many supporters for their generous donations to our "Dragon Boating for Dane" fundraising for the Canadian Cancer Society. I set an original goal of $1000 and as of yesterday, our combined online and cheque donations were over $1100! We still have a couple of weeks until the race weekend and not that I'm competitive (yeah right - that is quite the understatement) but we are #3 on the fundraising list and climbing. Dirk and I are aiming to raise as much as we can to help find cures for all cancers, particularly childhood cancers like leukemia. Having spent the past eight months at Cancer Care Manitoba, we are overwhelmed by the doctors, nurses, child-life specialists and programs that are in place to help young children like our Dane-OH fight this battle. If you are interested in pledging our cause, please refer to the instructions I posted in the August 17 update.
As I sign off for today I reflect that it has truly been a team effort to reach this significant milestone. All the support, assistance and caring thoughts we have received from all over Manitoba, Canada and the US has helped keep the "wind in our sails", especially during the really hard times. Our heartfelt appreciation to everyone who has been by our sides as we travel "Dane's Journey".
Take care - Janie and Dirk

Monday, August 17, 2009

"Takin' Care of Business"






A "short & sweet" entry before bed to take care of a few items ...

The Home Stretch

We survived another "monsoon" weekend and tomorrow is Day 1 of Dane's final week of DI. We are officially in the home stretch and counting down his treatments. It's been a long and intense eight months and a few week break before Maintenance starts will be a treat.
The Hantscher 5
As promised in last week's entry, I've posted a couple of new photos. We tested the self-timer feature on our new camera to snap the first shot and the other is Clare at three months.
Dragon Boating for Dane

Dirk and I will be paddling our hearts out the weekend of September 12 & 13 at the Manitoba Dragon Boat Festival. This is an annual event and a MAJOR fundraiser for the Canadian Cancer Society. We are part of the Paddlestar Galactica team and have created a personal fundraising page to collect online pledges. If you are interested, please follow these five easy steps ...
1. Click on the link below
2. Select Pledge a Participant
3. Search by our last name - Hantscher
4. Read our personal page
5. Follow the online pledge instructions

I will provide more race details (date, time and heats) as Sept 12 & 13 draws closer. We are hoping for a BIG turnout to watch our team race - if you have never been to the Forks that weekend, it's an amazing experience!!!
Have a good week everyone.
Take care ... Janie and Dirk

Thursday, August 13, 2009

"Progress, Perseverance and Personal Victory"

This week's entry is the "three p's" and pretty good news all around. Here's the scoop ...
Progress ...
Yes, you guessed it - Dane's neutrophils were high enough on Tuesday to start the last two weeks of Delayed Intensification. We had a nine hour day at the Clinic but that was a better alternative to him being hospitalized overnight (this happened the other two times he received this particular medicine). He fared really well, but that's likely due to the fact all the rules get broken on days like Tuesday such as eating potato chips at 10:30 am and watching 4 hours of the Simpsons and SpongeBob Square Pants videos. We were back at Children's Hospital yesterday for a spinal tap procedure and at the clinic this morning and again tomorrow for leg needles. We get a three day reprieve from hospital visits and then he goes Tues - Fri next week for leg needles every day. He doesn't particularly like these (I can't imagine why), however the magic cream that freezes his leg really does the trick and he barely feels a thing. He's also taking pills at home for 14 days and will finish these August 24. That will mark the official end of DI and the intense phase of his treatment. It's onto Maintenance after that and what we hope will be a much more regular life for everyone.
Perseverance and Personal Victory ...
These two headings go hand-in-hand and the story is short and sweet. Upon our return from GF last weekend, Dane felt great and decided that he would attempt his four laps of the pool last Sunday when we went for a quick family swim. I swam beside him and he passed with flying colors. That meant he could go ANYWHERE in the pool on his own for the first time this summer. He was up for the challenge again on Monday and pulled it off. This was an extra special personal victory because all his friends were there and he got to be "normal" just like them. He spent two hours in the deep end swimming and diving in - it was a real treat to watch. Attempting the laps was truly a test of his perseverance and I told him that even if he never has the energy to do them again this summer, he can say "I did it - not just once, but twice!!!"
We head to the lake again tomorrow night and we are hoping the weekend forecast of rain is wrong. Ashley has been there since Wednesday hanging out with her Grandpa and we are thankful the two of them have enjoyed the great weather these past few days. Oh well, if it rains, a blueberry picking trip will be a good weekend activity.
I'll post some new photos of the kids next week. Dane and I took some great ones of Clare today to mark her hitting the three month milestone.
Take care everyone ... Janie and Dirk

Wednesday, August 5, 2009

"The Good, the Bad and the Ugly"

Good evening,
As the saying goes, shall we start with the good news or the bad news first? And let's not forget about the "ugly" news of the past couple of weeks as well. Given I have the power of the pen, I'll start with the ugly first and work my way to the good to end this entry on a positive note.
The Ugly ...
  • It's just my opinion, but the end of July weather we experienced was downright ugly! August is starting off a tad more acceptable but several days of blue skies and decent temps will need to occur to get the weather off my list.
  • Need I say more than "steroid emotional swings and crazy food cravings" to describe a few ugly moments the past couple of weeks. That said, Dane fared so much better this round than he did way back in January/February and the entire family is grateful this was the case.
  • Dane's realization and verbalization that because of the leukemia, he can't do "stuff" - like swim four lengths of the pool and get up on waterskiis like his sister and cousin. We reassured him this is only temporary and for someone battling leukemia, he should be very proud of everything he has done these past months.
The Bad ...
  • After dodging the hair loss bullet for seven months, we faced the inevitable the past week as Dane's hair started to really fall out. Every swim and hair brushing left it thinner and thinner and so yesterday we proactively shaved it very short. He and I held it together while he was in the hair dresser's chair, but both had meltdowns of varying degrees later in the day and this morning. Seeing Dane with very, very short and thin hair is a tough adjustment, but we are fortunate as this phase shouldn't last long. Come September and the start of long-term Maintenance it should grow back.
  • "Murphy" was at work and as I intuitively suspected, his neutrophil count was not high enough for him to start Day 29 yesterday. He was soooo close - his count was .67 and it needed to be .75. So now we wait until next Tuesday to see if it rebounds enough to keep this train moving. Dirk and I were very disappointed, however Dane was pleased he didn't have to receive any meds for the next week.
  • A few tough moments with Ashley when she verbalized how hard it is at times being the sibling of a newborn and a sick brother. She has done really well to hold it together and we are very proud of her.
The Good ...
  • Ashley and Dane had a super and fun-filled August long weekend at PL. There were many great activities to fill the time, the sun shone very bright on Sunday and Dane's energy level rebounded after a difficult weekend at the end of July (he was very lethargic).
  • The Children's Wish Foundation! Dane received an invite to meet a few NHL players in town this week for a charity golf tournament and hockey game. The entire family went to the Wish Foundation Office yesterday for some autographs and photos and much to our delight, were given "comp" tickets for the Summer Showdown game at MTS Centre tomorrow night. We are all going and taking Dane's best buddy from school. Before the game the kids get a chance to meet all the players at Autograph Alley and they will be armed with hockey paraphernalia for the many signatures they will be collecting.
  • We received the doctor's ok for a little get-away so we are heading to Grand Forks on Friday/Saturday. The kids are looking forward to some time at the water park and I'm preparing to shop for our ever growing Clare (weighing in at just under 14 pounds).

Until my next entry after our appointment on Tuesday August 11, take care.

Janie and Dirk

Wednesday, July 22, 2009

"Summer Days"





































The calendar says it's summer so who am I to disagree with mother nature, but I can sure say this isn't my idea of a balmy July in Winnipeg or at Pickerel Lake. The beauty of being a kid (no pun intended) is weather really doesn't matter when it comes to enjoying the outdoors and I'm grateful this is the case for Ashley and Dane. Even with Dane's schedule the past few weeks, they have packed in a lot of good times with family and friends at the cottage and hanging out at the local pool. So lest there was any worrying taking place, the reason for my two week writing hiatus is not because there have been any glitches in Dane's treatment, but rather due to being busy these past "summer days".

Here is a quick catch-up on Dane's progress ...
He had his day 8 and day 15 treatments last Tuesday and yesterday respectively and aside from being fatigued more than usual the day or so afterwards, he has sailed through the first three weeks. His first week on steroids was pretty uneventful, although we joke he is going to be the only 10 year old who needs his cholesterol checked due to his red meat intake. He ate an entire t-bone steak one night and couldn't stop bragging that he ate more than his dad! We found him to be more emotional and moody last week during his week off steroids but it was nothing that couldn't be handled. He started the roids again yesterday and will finish this round next Tuesday. That will be it until September when he begins his first of many, many months of "steroid boosts" (five days in a row).
Dane is treatment "free" for the next two weeks and the earliest date he will resume chemo is August 4. I say the earliest because August 4 is day 29 of this DI phase and he will not get meds that day unless his neutrophil count is more than .75 and his platelet count above 75. As I'm sure you faithful readers have figured out, knowing whether he is going to be ready is a crap shoot for everyone. In the past he was ready after a three week break, however his oncologist said he might recover quicker this time because his bone marrow is much healthier than it was several months ago. If his levels aren't high enough, we try again on August 11. It makes planning our time at the lake difficult, but unfortunately there is nothing we can do about it. We are looking forward to him finishing this round, as it will mark the end of the intense phase of treatment and allow him to start grade three in long-term maintenance.

I know I probably sound like a broken record, but man our Dane has guts. We know his little legs don't have a ton of strength these days due to the side effects of Vincristine (a chemo drug he has received a lot), however he still tried water-skiing twice last weekend. His mantra that he "was never going to try this year" softened to "ok, I'll try once" and then "ok, I'll try again". All in all, he attempted to get out of the water six times and four of those times he was up, however he didn't make it all that far before he went down. After the last attempt, he yelled at me a tad (one of those emotional outbursts I referred to earlier) and then told me "I'm never doing this again and I fell on purpose". Once he had calmed down he said his legs just aren't strong enough and his oncologist confirmed this is likely the case. She looked pretty impressed he attempted skiing at all - like I said, he's a tough little bugger. I've attached a photo of him just out of the water for you to enjoy.
Ashley and Dane had a great visit with their cousin Marshall the past two weeks, but sadly, their time at Pickerel Lake is done. Scott and Marshall fly home to New Brunswick tomorrow and there were many tears shed when all the good-byes were said earlier this week. They enjoyed many lake activities together, particularly tubing, as is evident from the the smiles in the attached picture.

Clare is doing well and still packing on the pounds at a good rate. She is just about 13 lbs now and has gained six pounds since birth, almost double her birth weight. I'm getting a bit more sleep these days and if my memory is correct, she is a bit more reliable when it comes to slumber land than our other two hooligans. I've attached a couple recent photos of our little gal - as you can see, she has reached the smiley stage now.

Until my next blog, take care and capitalize on our nice summer days when they arrive.

Janie and Dirk

Thursday, July 9, 2009

"No Delays" ...

Good morning,

As we hoped would be the case, Dane's neutrophil and platelet counts were high enough on Tuesday for him to begin the next round of his leukemia treatment. So, we experienced "no delays" with the start of Delayed Intensification (DI) and we have our fingers crossed that is a sign this phase runs as smoothly as possible because it's an intense two months.
To kick-off DI, Dane and I were at Children's Hospital yesterday at 8:00 am for a spinal tap procedure. He received three different chemo drugs, one of which is new to his treatment. This particular drug is bright orange/red and one of the side effects is something only a juvenile boy would find "cool" - it turns your pee orange for the first 24 hours or so. And because not much shocks me these days, I was hardly even phased when I heard Dane cry out to Ashley late yesterday "come and look at my pee, it's orange!" A not so funny side effect of this drug is it's likely to cause Dane's hair to finally fall out. If that is going to happen, we will see signs in the next two to three weeks. I have been dreading this happening, however we have been very fortunate he has hung onto his locks (nasty cowlick and all) for the past six months.
Yesterday marked the "return of the roids". He is on them until next Tuesday and so far the food demands and intake are very manageable. I'm not delusional though - I'm sure this will change very soon. He's pretty lean these days so I wouldn't mind him packing on the pounds a bit, even if it is short lived.
Our 10 days at PL were a lot of fun and rain, cool lake temps and bugs didn't slow Ashley and Dane down. They swam, tubed, quadded, hot-tubbed and fished -just to name a few activities! My brother and family are here from NB and we are looking forward to some good times together in the next couple of weeks.
Our little Clare is not all that little anymore. She will be two months old on Saturday and now weighs 11 1/2 pounds. She has gained five pounds in eight weeks - the pediatrician will for sure be giving me the double thumbs-up at her check-up next Monday. I'll post some photos in my next update with her big bro & sis - our camera ran out of charge at PL so we are short on new ones right now. Clare is in my good books this morning - for the first time ever she slept a stretch longer than four or so hours. She was in slumberland from 11:00 pm until 4:30 am and when I woke at 4:25 I couldn't believe what time it was already. I'm hopeful there is more where that came from!
Although he may not physically look sick right now, there are daily reminders that for the time being, Dane is different than he was or than his peers. Some of those reminders are manageable and others more painful. Earlier this week I had a mom meltdown when he didn't have the stamina to swim the necessary lengths of the public pool, an activity that is required for him to go in the deep end. He did this without a hitch last year and so to watch him struggle for energy and then tell my almost eight year old he has to wear a life jacket in the shallow end was heartbreaking. It's times like those that his illness is much more obvious and painful.
As I close this blog entry, I reflect that it has been six months this week since Dane's diagnosis. There have been many lows and some highs during that time and we have managed to forge our way through this tough journey pretty decently. Dirk and I would give anything to erase the words "our son has cancer" from our vocabulary as I'm sure all the other families that we meet at the clinic wish for as well. We remain immensely proud of Dane's resilience, determination and spirit - he truly is one strong kid and a real fighter.
Until my next entry, take care - Janie and Dirk

Wednesday, June 24, 2009

"An A+ for Interim Maintenance"











Good afternoon,

Sorry for the delay in posting this update. Between tons of end of school activities, sleep deprivation (me, not Clare) and some technology issues (blogger was on the fritz for a day or so), I'm behind in my writing. Here is the scoop on the past week ...

An A+ for Interim Maintenance

As we hoped, Dane completed Interim Maintenance last Friday. He received his day 41 treatment and as has been the case this entire cycle, his counts were high again so his dosages were increased. He did amazing this past round - he didn't experience one delay, the side effects of the treatments were minimal, his white blood and neutrophil counts were good and high to help him fight off any lingering virus germs, he attended school pretty much full-time, and played all his soccer games (see action photos from last night please). He now has a well deserved two week break until the next round, Delayed Intensification.

Return of our carnivore??

Assuming good blood counts, Dane starts Delayed Intensification (DI) on July 7. Unfortunately, this is a pretty intense round, similar to what Dane experienced way back in January/February during the Induction phase. Yep, the steroids will be back in the mix, although at least this time it's one week on steroids, one week off and then another on. So, he will be on steriods two weeks out of three, during which time we are expecting a return of our carnivore. I will be stocking up on steak, ribs and hamburger for the lake to ensure we have the food he craves on-hand. I am very optimistic his mood swings won't be as severe as in January and am hopeful that being at Pickerel Lake will help with his temperment.
Another year in the books

Friday is the last day of school for Ashley and Dane and it's hard to believe another academic year is complete. Time has really gone by quickly and at this point, I think we are all ready for school to be finished. Deservedly so, the kids are in "party" mode and today Dane has a special treat - an after school pool party at his teacher's house. When September rolls around, Dane will start grade 3 and Ashley grade 4. Dane will also be in long-term Maintenance by then so that will make life much easier.

The start of summer

As I mentioned in my last update, we are heading to Pickerel Lake for our first trip of the season this coming Saturday. We are all looking very forward to being at our favorite place and not having any structure. The great weather lately has pushed the lake temp to the mid-high 70's and that bodes very well for swimming. We purchased water skis for the kids last weekend so they can get started on that activity right away. The kids' cousin, Marshall, arrives from New Brunswick on July 7 for a couple of weeks and we expect that like always, they will have a great time together. I'm in packing/shopping mode for the lake and will be glad when that job is done - it's a lot more complicated again with little Clare.

Our growing baby

Clare continues to pack on the weight and is now almost ten pounds. She is still not sleeping very well at night and I'm naively optimistic the fresh Pickerel Lake air will help with that (a woman can dream, can't she)?? She is six weeks old and definitely more of a little person - we get smiles now and when she is awake, she's much more content.

Given we are off to the lake in a couple of days and I will be without my computer, I won't be posting any more updates until July 8 or so. In the meantime, enjoy the summer weather and as always, thank you for continuing to stay tuned to Dane's journey.

Take care - Janie and Dirk

Tuesday, June 16, 2009

"Negative is positive"

Good morning,

I have a few quick moments to spare this morning as Ms. Clare appears to be napping. I say "appears" because she tricks us a lot these days - just when we think she is out she wakes up and 9/10 thinks it must be time to eat - AGAIN! She was up to nearly 8 1/2 pounds last Thurs at her one month check-up and I'm sure she is close to 9 lbs by today. I know that still sounds small to many of you who had ginormous babies, but when the pediatrician gives you the two thumbs up because she is gaining at 1.5 times the average rate, you know that doesn't bode well for mom's slumber. No photos today - I'm still waiting to get a good one of her and Ash & Dane.
In the case of Dane's H1N1 status, "negative is positive". We received word Friday afternoon that he does not have the virus - thank goodness! We can only hope he does not become one of the 50% of Manitobans that health officials expect will contract H1N1. Camp Arnes was cancelled outright due to the virus so our campers stayed home this weekend. They were a tiny bit disappointed but filled the weekend with many other fun activities (b-day parties, time with Grandma and golfing).
Dane seemed to have basically no negative reaction to his heavy-duty treatment last week so again that was very positive news. He is in his feeling well zone right now and has the week off until his day 41 treatment this Friday - the last of this cycle. If he continues to feel great, we have decided to pull the kids from school for the last day and head to Pickerel Lake for a ten day stint from June 27 - July 6. With this turn in the weather, it finally feels like lake season - now we just need the nasty little black flies to disappear.
As I predicted, the trickster is starting to stir after a short little nap so I better sign off. I'll post again after his Friday treatment.
Thanks for continuing to "stay tuned" to Dane's journey.
Janie and Dirk