Team Katie – Great Strides 2011

Folks,

As many of you know, our daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.

On Sunday May 29 2011, the Cystic Fibrosis Canada will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.

Please watch our video, which provides a window into our world:

CF, which affects the lungs and the digestive system, is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions each day with her.

Here’s a brief list of her regular medicine intake and treatment regimen:
– approx 20 pills a day (enzymes – they help Katie digest food);
– vitamin supplements;
– 2 to 4 Pediasure nutrition supplement drinks each day;
– Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
– Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
– Inhaled antibiotics – 2 weeks on, 2 weeks off year round;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:
– Oral antibiotics;
– Additional medicine in her nebulizer from time to time as her health dictates;
– Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 29 2011.

To assist, you can:
1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 29; and/or
3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 29 at Safari Niagara in Stevensville, click here:
http://my.e2rm.com/TeamPage.aspx?teamID=204804&langPref=en-CA

To sponsor us directly in our fundraising efforts for Team Katie, click here:
http://my.e2rm.com/personalPage.aspx?registrationID=1077314&langPref=en-CA

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah, Katie & Riley Dow

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Happy New Year!

Yes, I know it’s already January 13th. I’m a bit late on my first post of the new year. 🙂

The last few months have been rather hectic. Plenty going on. And yes, I have neglected our blog for far too long. For that, I apologize.

So, to get everyone up to speed, here’s what we’ve been up to.

Dow Family 2010
Dow Family 2010

October: Plenty of good times. We checked out “Touch a Truck” in Niagara. We celebrated Noah’s 5th birthday. We visited Bry-Anne Farms in Fenwick, Ontario. The kids had a blast! And of course Halloween was fun.

November: Not much to report… Got ready for Christmas. Kept busy with work and play.

December: Busy month. We started the month with a sick household. We think that the cold/flu/whatever it was hit us early this year, affecting all of us at one time or another. Katie seemed to keep healthiest – I suspect that her daily CF treatments helped keep her lungs clear, and thus, helped to keep her healthy as well.

Feeding the sheep
Feeding the sheep

We had a special Christmas this year as well. We went to Ottawa to visit with my sister Stacey’s family: Stacey, Paul, Ben & Max. They have a bit of a hobby farm at their place. Needless to say the kids loved it. They even got to feed some sheep!

From there, we went to Julie’s extended family Christmas, which was hosted by Julie’s Uncle Steve and Aunt Ingrid in Ottawa this year. We had a great time there as well. Plenty of family time and we got out to see the Museum of Civilization in Hull, Quebec as well.

Which brings us to January. Plenty going on now as well. I’ll update more on that in my next post. Watch for that post within the next couple of days.

And yes, that book is still on my list. I’m working on it.

Talk soon!

Todd, Julie, Noah, Katie & Riley

I’m writing a book – “Cystic Diagnosis”

Katie, Noah & Riley - Aug 2010
Katie, Noah & Riley - Aug 2010

We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.

OVer time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.

To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.

I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.

Ideally, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.

Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.

Here’s the basic outline of the book that I’m thinking of writing:

1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Routine
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
6. Hope:
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
10. Ethics:
* Having more children after a CF diagnosis
* Universal health care
* Etc
11. References:
* Books
* Websites
* Charities
* Additional resources

What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.

Thanks,

Todd

CF in the news: “The fear factor in health fundraising” in CMAJ (Aug 2010)

CF is like drowning on the inside
CF is like drowning on the inside

The Canadian Medical Association Journal (CMAJ) recently published an article and two letters (see footnotes at the end of this post) that dispute (one of the letters defends the marketing) the accuracy of the ads depiction of living with CF, and thus, question the effectiveness and appropriateness of the advertising campaigns themselves.

The criticism is mainly directed at protecting CF patients and their families. The main target of the criticism is an ad that depicts CF as being “like drowning on the inside” and the ad shows a child’s face barely held above the water, visibly struggling not to drown. This is most distressing for CF patients and their families, as it puts a very real visual of “what’s to come” to a disease that many live in denial about.

The ad comes in two forms: there is a print version, and there is also a 30 second video version.

Many families that live with CF live in denial that CF will catch up with them. This is a survival tactic that allows patients to live a life of hope, living with the understanding that they may beat the disease. When vivid visuals are shown, it does provide a real-life horrific reminder of what CF patients live with and what they may experience as CF wears away at the lungs.

As a parent of a child with CF, I was horrified the first time I saw this ad. Others close to our family are unable to watch the ad. Most days, we do well to put it out of our minds, hoping that a cure will arrive before disease progresses to a point of no return.

According to the article, “Cystic fibrosis, a fatal genetic disease that affects about one in 1600 people, causes mucus to accumulate in the lungs, affecting breathing.” According to Dr Annie Janvier, a neonatologist and clinical ethicist at Sainte-Justine Hospital in Montreal, Quebec, “people receiving proper medical care would at no time, not even when dying, feel as if they were drowning or breathing through straws.”

In defence, June Pierotti, the director of communications for the Canadian Cystic Fibrosis Foundation, says, “the ads are not intended to mislead, scare or hurt anybody. Adults with cystic fibrosis are consulted on advertising concepts, as well as parents of children with the disease. Most people don’t know much about cystic fibrosis”, says Pierotti, “and hard-hitting advertisements are necessary to get people to realize it is a serious problem that deserves attention.”

In response to the letter referenced above, Karen Gliddon (Hamilton and Area Chapter President, Adult Committee Chairperson and CF patient) and Nathan Fish (Ontario Representative Adult Cystic Fibrosis Committee Advertising Campaign Working Group Member) urged, “Unfortunately, in contrast to other major diseases, cystic fibrosis is not well known or understood by Canadians. It is therefore vital that CF advertising campaigns present a powerful and real depiction of what it’s like to live with cystic fibrosis.” Further, “Prior to launching an advertising campaign, the Foundation consults and receives input from the CF community, including parents of children with cystic fibrosis, adults who are fighting CF personally, and healthcare professionals. As leading members of the CF community who approved the current campaign, we recognize that its hard-hitting message may affect some individuals negatively, and we try very hard to minimize this impact.”

The ethics of these advertising campaigns are unclear. The concern to protect CF patients from such graphic and scientifically debatable depictions of the disease is understandable. Yet, it is difficult to truly understand what CF feels like. Thus, “shock and awe” advertising does raise awareness, and with it, funds that are desperately needed for additional research to help find a cure.

I don’t know about you, but, I’m willing to tolerate a bit of debate over the accuracy of the ads if it means additional awareness. I say kudos to the Canadian Cystic Fibrosis Foundation for their campaign. While disturbing to those of us that live with CF each and every day, I am thankful for the awareness and the benefits that the advertising generates.

My two cents…

Todd

Articles referenced in this post:
The fear factor in health fundraising
Raising money for cystic fibrosis: At what price?
Cystic fibrosis advertising campaigns – a response

CF in the news: “Surviving cystic fibrosis” in Macleans (Aug 31 2010)

Ashley Donelle - Macleans Aug 31 2010
Ashley Donelle - Macleans Aug 31 2010

Thanks to Cathy Gulli and Macleans for sharing this story about Ashley Donelle, a 20-something Montreal woman with Cystic Fibrosis who recently underwent a double lung transplant.

The article charts Ashley’s suffering with CF, the transplant that saved her life and the ongoing health concerns that come with being a transplant survivor. The article also highlights Ashley’s health improvements since her surgery. Ashley words: “I had to train my brain that my body wasn’t sick anymore.” She is now blessed with good health. Health that allows her to live and celebrate life every day with her two children.

There is good news in the ongoing research and what it already means for CF sufferers: “Life expectancy has increased by about one year every year over the last decade—to a median age of survival of 47 in Canada.”

More encouraging is what’s to come. Dr Francis Collins, one of the co-discoverers of the CF gene, is quoted in the article as saying, “I’m optimistic enough to say that it will be a story about a disease conquered.” That day can’t come soon enough.

What conquered will mean remains to be seen. Dr Felx Ratjen, head of CF clinical research at the Hospital for Sick Children in Toronto, “would rather talk about control of the disease because this is a more realistic view.”

Many are optimistic that technology will yet prove to be a great equalizer when it comes to CF. A cure or control can’t come soon enough. Just ask those currently suffering from the disease. Over 3,600 CF patients require daily treatment to help stave off the effects of this fatal genetic disease.

But for now, stories like Ashley’s offer motivation to those that find themselves challenged by the disease.

Thank you Ashley for sharing your story. You truly are an inspiration.

Todd

Hello Fall and our new blog look & feel

Dow Family 2010
Dow Family at Ball's Falls - Sep 6 2010

I know that I said I’d post on this blog over the summer. I had good intentions… but… that didn’t work out so well. My apologies.

Regardless… welcome to the new look and feel for BreathingAsAFamily.org. I have consolidated all of my blogs on wordpress. I was hosting things on blogger, but, after much deliberation, I decided to switch. I’ll write about the switch and my reasons for doing so on my sister blog, wirepaper.com, in the near future. Check there if you’re interested in some geek reading.

And welcome to Fall 2010! I know it’s not “calendar fall” yet, but, with school back in, it certainly feels like summer is over.

Yesterday, we marked the end of the summer by going on a hike to Ball’s Falls in Vineland, Ontario. We had a great time. And, we got some great pictures as well. As you can see from the picture posted here, Riley has now officially participated in his first “high risk activity” by sitting close to the edge of Ball’s Falls.

Here’s a sneak peak at this fall’s content on BreathingAsAFamily.org:

  • Family update – what we did this summer;
  • Great Strides 2010 Thank You Party;
  • CF in the news: macleans article from Aug 30;
  • CF in the news: “The fear factor in health fundraising” – comment and response;
  • Help me write a book, entitled, “Cystic Diagnosis: Our FIrst Year with CF”;
  • “Cystic Diagnosis” – share your stories of your first year with CF;
  • “Cystic Diagnosis” – what should be in a “handbook for families new to CF”?
  • As my book takes shape, I’ll post content excerpts from time to time as well;

So, check back often. It should be a fun fall/winter. I hope to post a couple of entries a week through the fall and winter.

Talk soon!

Todd

Do you ever think about losing your child?

For the last few months, Julie and I have been following the story of Eva Markvoort. Eva has been a courageous and energetic CF patient with an infectious sense of hope. We’ve clung to the hope that Eva would succeed against the odds and triumph over the same disease that our daughter Katie has.

The last few weeks have been tough to watch as Eva’s health deteriorated. The finality of her death this past weekend was a reminder to us that our daughter suffers from a disease with no known cure and a cruelly short life span (less than 40 years of age) for over 50% of CF patients.

Seeing someone die from this disease at the age of 25, when that person should be living life, growing a career, getting married, having children, seems horrific to any parent. For many, the thought of a parent burying a child is unthought of. It’s supposed to be the other way around. Parent’s aren’t supposed to outlive their children.

For those parents that do lose a child, it can be sudden, catastrophic and devastating. Car crashes, accidents, violence and suicide can come from nowhere and cripple an entire family with grief. There is no time to prepare. No time to say goodbye. No time to think of what if.

But for us, we understand the freight train that is heading towards us. We know what cystic fibrosis does to the body. We know that it relentlessly eats away at healthy lung tissue, leaving scarred and damaged lungs that can’t process oxygen. They starve the cf patient of air, leaving them unable to breathe.

CF patients deal with daily treatments to help fight off the effects of disease. Julie and I work daily on Katie’s body, doing our best to keep her healthy and to keep infection at bay. We fear for the future. But, we’ve learned that we have to live in denial about what the future holds. We deny that CF will get the best of Katie. We hope that she’s one of the lucky ones – the ones that surpass the average life expectancy. We hope. We pray. We push that fear to the far corners of our minds.

Eva’s situation has reminded us of the gravity of the situation that we face with Katie. Odds are that we will outlive her. Unless something changes. And that something needs to happen sooner rather than later. We can’t wait until Katie is horribly sick with disease to start fighting for a cure. We need to act now, while she has her youth and her health and her vibrant, bubbly nature.

We need to do the heavy lifting now to help find a cure BEFORE Katie needs it so that it is available, tested, proven and reliable when she needs it.

Research looks promising. But I don’t see a cure yet. And I don’t want to wait until Katie desperately needs a cure before we start looking. I’m fighting now to help find a cure so that when Katie needs it, it’ll be there.

Put yourself in our shoes… What would you do if you knew that something was going to prematurely take the life of your child? Would you wait until that time came to start fighting? Or would you work now to prevent ht from happening at all?

Please do help… every little bit helps. Consider some numbers:
According to facebook, the average user has 130 friends. Imagine if each of those friends donated just $10 to a cause. That’s $1300! And imagine if each of those people asked their friends to donate – and their friends donated that same $10, that would total $169,000! It’s crazy what a simple $10 donation could do. And yes, it’s unlikely that those 130 friends would not overlap. But, that’s not really the point. The point is the power of social networks and small donations to help effect change.

So think about it… help us out. Ask your friends to help us out. It’s easy to do. Donate here:
Click here to donate to Team Katie
Click here to register to walk with Team Katie on May 29 at Safari Niagara in Stevensville.

Help us make CF mean “Cure Found”.

Todd, Julie, Noah and Katie

Tribute to Eva Markvoort

As many in the CF community know, we lost a great CF champion this past week. Eva Markvoort died this past weekend of CF-related complications at the age of 25. Eva has been a courageous and uplifting CF patient who demonstrated hope and love in the way that she strove to raise awareness of Cystic Fibrosis in hopes of finding a cure and to help raise awareness and support for organ donation.

Eva was the subject of the documentary 65_RedRoses, which is an award-winning documentary. This documentary has been featured at HotDocs in Toronto and the Vancouver Film Festival. The documentary has been broadcast on CBC as well. This documentary will be broadcast again this Friday April 2 at 4am and 8pm. For more details, see this site: http://www.65redroses.com/

The documentary chronicles Eva’s deteriorating health condition from Cystic Fibrosis and her wait for a new set of lungs. The documentary highlights the difficulties of cystic fibrosis, the challenges of organ transplant and the hope for new life that comes when organs become available – donations made available by the loss of another’s life. The documentary ends on a positive note, showing Eva participating in a Dragon Boat race, seeing life in front of her that had not been possible before her double lung transplant.

Two years after her transplant, which occurred in late 2007, Eva’s health began to deteriorate again. This time, her body was rejecting the new lungs that had prolonged her life. Eva held on, blogging about her deteriorating health, her thoughts, her fears, her loves and her dreams.

This past Saturday March 27, at 9:30am, Eva died. This short post announced it to those that were following her struggles on her blog, 65redroses.livejournal.com:
“Our beautiful girl died this morning at 9:30. She is at peace. Will write more later.”

Eva’s legacy will be a strong one. Eva has been a lightning rod of activism and awareness for a disease that science has made great strides against in the last 40 years. There is still much to do to beat this disease, but Eva, I thank you for all that you have done to combat this disease and to provide hope to the many that still suffer from this terrible disease.

To honour Eva’s life, please consider making a difference:

  1. Sign your organ donor card.
  2. Share Eva’s story – 65_redroses trailer
  3. Celebrate Eva’s life: Join the facebook group

Thank you Eva. You are greatly missed.

Todd

Breathe by Matt Scales – song lyrics

Our Team Katie video for 2010 features the song Breathe, from Matt Scales, a CF patient who died from the disease in 2007 at 28 years of age.

Matt’s personal struggle with CF made the song especially poignant, given his intimacy with the disease.

You can view more information about Matt and you can also download an mp3 copy of the song as well as an mp4 video of the song at this URL: http://www.cfvoice.com/info/breathe/index.jsp

Here are the lyrics to the song, Breathe:

Breathe
By Matt Scales
Through my eyes
I see you
Staring at me
All the time.
So I wish
That it would leave
My body.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
So won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
Then I think that
I’m all right
But it keeps changin’
Like the weather.
It’s not up to me
How I feel
How I feel
Inside.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me…please?
Cause one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you…like you.

Original “Breathe” Composition © 2001 Matt Scales and Barnaby Pinny.

Great Strides 2010 fundraising and awareness

I just want to say thank you to the many people who have donated or signed up to walk with us on Sunday May 30 2010. You have been very generous and we appreciate all of the love and support.

And, I’d like to share a recent blog post that very succinctly summarizes the video as “a prayer”: http://thefirstmennonitechurch.wordpress.com/2010/03/17/choices-in-iworld/

Thanks Carol for helping to share our message and for recognizing it as such.

Talk soon!

Todd