Categories
cystic fibrosis

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

Categories
cystic fibrosis

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

Categories
cystic fibrosis

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

Categories
cystic fibrosis

Great Strides 2010 Thank You Party

Great Strides 2010 Thank You Party
Great Strides 2010 Thank You Party

Ever since Katie was first diagnosed with Cystic Fibrosis two years ago, the love and support of our family and friends has been phenomenal. We have been extremely grateful to everyone that has offered prayers, words of encouragement, friendship and support as we adjusted to living life with a fatal disease always lurking in the background.

On the last Sunday of May each year, the Canadian Cystic Fibrosis Foundation hosts the annual “Great Strides™: Taking Steps to Cure Cystic Fibrosis” walk. This past May was our second year attending the walk. It was a greet day – the weather was perfect, we had a great turnout and we had a lot of fun. Check out this post for all of the details from the day.

This year, Team Katie had 210 sponsors and 53 people walked with us at Safari Niagara on Sunday May 30 2010. Team Katie raised over $13,000! Check out the Team Katie – Great Strides 2010 Results! blog post for a full summary of what the team accomplished this year.

To say thank you and to celebrate the success of this year’s walk, we hosted a thank you party for everyone that walked with us this year. The party was held at our house on Sunday August 29. You can see pictures from the event at this flickr slideshow.

We would like to say thank you to everyone that walked with us, donated to this year’s Great Strides walk and/or offered encouragement to us this year. We are truly grateful for the generosity that everyone has shown.

Much love,

Todd, Julie, Noah, Katie & Riley

Categories
cystic fibrosis

Welcome to Riley John Dow!

Welcome Riley!

Folks,

Great news – the latest addition to the Dow family has finally arrived. Please welcome Riley John Dow. Riley was born at home on Tuesday June 1 at 9:50am. He weighed in at 9 lbs even. Julie and Riley are both doing fantastic.

Big thanks to the midwife team: Rachel, Colleen and Pilar. They were fantastic. They made the birth such a fantastic, relaxing and enjoyable experience. Well… as relaxing as it can be to be giving birth – keep in mind this being written by Todd, who does not have experience giving birth. 🙂

Rachel, Julie, Riley, Colleen,
Pilar & Jennifer

And big thanks to Julie’s sister Jennifer who assisted as well. Couldn’t have done it without you Jennifer!

You can see a bunch of pics on flickr:
the main photoset
Riley John Dow slide show

Thanks!

Todd, Julie, Noah, Katie and Riley