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

Cystic Diagnosis Part 5: Diagnosis

On Tuesday afternoon (Sept 30) just after noon, Julie called me at work, crying. She said the CF clinic just called, and Katie's results came back positive for CF. I took the afternoon off. Shortly after I got home, the Celiac doctor (the one that referred us to the CF clinic) called us from his cell phone. He was in Israel on the last day of a vacation and he felt the need to call us to reassure us that even though the results were positive, there was reason for hope. He said he would be back in the office the following day and he would follow up with another phone call then.



The next day (Wed Oct 1), the Celiac doctor called us from his office at McMaster. He explained what the positive result meant:

• Katie most likely has CF.
• There are few, if any, false positives.
• But, they'd do another test to make sure.
• He explained that CF isn't as scary as it once was.
• Half of CF patients now live into their 30s and beyond.
• And, he said that the daily regimen of treatments has been key to the increased life span (only 20 years ago, the median life span was only 16 years of age).

Our lives changed in an instant that day. We entered into a period of mourning for a number of days. We were devastated. We were fearful for what this meant for Katie. We were fearful for what it meant for us as a family. Noah, only 19 months older than Katie, would be impacted by this as well.

We surrounded ourselves by those that could offer comfort during those first few days after the diagnosis. Our immediate families, friends and our extended church family became our strength in those first few days and weeks after the diagnosis.

We did our best to put on a brave face though... just two days later, on October 2, we hosted a large family gathering to celebrate Noah's 3rd birthday. Life had to go on. We couldn't deprive Noah of joy during this time. So, we did our best to celebrate his birthday on his special day. We did have a good time, but, it was the first time that we had to address having a good time while having sad thoughts always lurking in the background.

Next week, I'll conclude this series with a couple of posts on the days following the diagnosis.

Thanks for reading and talk to you next week.

Todd

Cystic Diagnosis Part 4: Sweat Test at the CF Clinic

On Thurs Sept 25, we visited the CF clinic at McMaster Hospital.

Sweat Test machine at McMaster

The clinic at Mac was fantastic. The CF test itself is pretty archaic, but, apparently, it's also extremely accurate. They refer to Mac's test as "the gold standard". And, I've been told that if you get a CF test, McMaster is the place to get it. Other hospitals do the test, but, even if their results come back positive, they still send you to McMaster to "make sure". The test involves measuring the amount of salt in the patient's sweat. It goes like this:

1. They clean the person's forearm with alcohol or some other cleaning material.
2. They put a metal plate about the size of a credit card on the arm. They connect this metal plate to a big battery-sized device that looks like a radio from WWII. This machine sends an electrical pulse through the arm, stimulating it and making it sweat. This happens for approx 5 minutes.
3. They take the plate off and they put a piece of sterile gauze on the arm, cover it with a plastic bandage and wrap the whole thing in a towel and tape the towel over the arm.
4. You go hang out for a 1/2 hour, while the arm sweats and the sterile gauze soaks it up.
5. Go back into the clinic room where they take the gauze off and send it off for testing.
6. Done. Pretty simple.

NOTE: none of this is uncomfortable for the child. At most, the person will wonder why the plate is buzzing on their arm.

They told us that the results would be available quite quickly - our doctor would likely get the results back the next day (which would have meant Friday Sept 26 in the afternoon) but we likely wouldn't hear back until the next week, as it takes doctors FOREVER to follow up on this stuff.

So... we spent a really long weekend worrying. Me, not so much. I was in denial that this would be something we'd have to deal with. Julie was panicked though. She was certain that Katie had CF. She called it "Mother's intuition".

Monday, still no word. Our doctor hadn't heard. The clinic was unreachable. We started to get puzzled as to why it was taking so long.

Up next: Diagnosis

Cystic Diagnosis Part 3: Family Doctor & Celiac Clinic

McMaster Children's Hospital

Picking up where we left off, Julie visited our family doctor the following Monday (Aug 25). The doctor reiterated #s 1 to 3 that we were told at the emergency room the Friday prior:

1. It's random. It won't happen again. Don't worry about it.
2. Celiac disease - dietary disorder where the body can't digest wheat properly.
3. Cystic Fibrosis - but... the odds are quite low on this, so don't worry about it.

And, the doctor also repeated her earlier statement that it likely wasn't CF, because Katie didn't have any of the other symptoms.

So... our family doctor booked us to visit the Celiac clinic at McMaster Hospital. We went to the Celiac clinic on Thurs September 11 2008. The clinic took some notes. They examined Katie. They took some blood. And they also spent a fair amount of time looking at her body - looking back, we can now see that they were considering whether she had "failure to thrive".

Funny enough, at that time, she had started to look a bit small. It wasn't a huge deal, but we were starting to notice her slipping a bit in how skinny she looked. This was strange, as she was a pretty chubby baby. We look back at baby pictures and she was always a pretty good weight. But, around the time we started to have her tested for Celiac and CF, she started to look thinner.

Celiac results came back a week or so later - I don't have the exact date for that handy. Negative. She did not have Celiac disease. We were down to two options at that point: The prolapsed rectum was a random thing, or, we were looking at Cystic Fibrosis.

Next step: test for CF. The Celiac clinic booked that appointment for us for Thurs Sept 25.

Next post: Sweat test at the CF clinic

Cystic Diagnosis Part 2: Warning Signs

Katie's symptoms were subtle at first. She had colds that took a long time to shake. She had a hard time sleeping at night when she was sick with colds. Looking back, before her diagnosis, she had a LOT of sleepless nights. She was diagnosed at 17 months of age, and up until that point, Julie and I both wondered when she'd start sleeping through the night on her own. We felt that it was taking forever for her to do that.

But, that in itself wasn't a big deal. We repeatedly asked our doctor (who had been a pediatrician prior to going into family medicine) if she thought Katie's constant colds were cause for concern. Our doctor said no, because most kids will get up to 10 colds a year. It didn't seem unusual. Looking back, we didn't have any cause for concern as Katie wasn't exhibiting any of the other symptoms when she was younger (under a year old)... symptoms like failure to thrive, constant appetite, underweight, etc. So, we didn't worry about it much.

As well, she has always had a bit of a big belly. Nothing too major, but her belly has always been pretty big compared to the rest of her body.But, that's not really a big deal and she'll likely grow out of it.

The one other symptom that we had always noticed, but didn't pay much attention to was her poop. It was always really smelly and some of her food seemed to come out pretty undigested. But again, looking back, we didn't clue in to this until after the diagnosis.

Then, on Friday August 22, I was changing Katie's diaper and she had some kind of a brown walnut shaped thing coming out of her bum. I called Julie into the room. She didn't know what it was either. So, we bundled her up and Julie took her to emergency.

Note: Katie wasn't uncomfortable. It didn't seem to hurt her.

Julie FINALLY saw the ER doctor after waiting in the ER for about 4 hours. By that time, the walnut sized thing had disappeared. The doctor told Julie that it sounded like a prolapsed rectum. The doctor said it shouldn't be a cause for concern, but to go see our family doctor the next week to investigate further. The doctor said prolapsed rectums are typically caused by one of three things:

1. It's random. It won't happen again. Don't worry about it.
2. Celiac disease - dietary disorder where the body can't digest wheat properly.
3. Cystic Fibrosis - but... the odds are quite low on this, so don't worry about it.

So... we waited through a long and agonizing weekend before booking a visit with our family doctor the following week.

Next up: family doctor & celiac clinic

Cystic Diagnosis Part 1: Intro

My daughter Katie was diagnosed with Cystic Fibrosis on Tuesday September 30 2008. Life changed for our family that day.

This post series is a documentary of our family’s experiences in the time leading up to that diagnosis. Writing these posts have been a cleansing experience for me. Putting my thoughts into words is helping me to process our predicament. And it is also helping me to focus on next steps.

My goals for writing these posts are two-fold:

• First, I hope to offer encouragement to other families that are faced with difficult health issues. Whether the struggles are Cystic Fibrosis or something else, there is a common understanding when we face our mortality and that of our loved ones. We share the same hopes, fears, dreams and disappointments.
• Second, I hope to raise awareness for Cystic Fibrosis. Much has been accomplished, but there is still much to be achieved. I feel that we’ve measured how deep and wide the Grand Canyon is, and now in order to reach the other side we need to either build a bridge or fill it in. Uncovering the genetic source of the disease and enhanced treatment options to slow the progress of the disease have significantly improved the lives of CF patients. But the end goal remains elusive.

I’ve been told that we’re fortunate. “At least she’s doing okay.” “It could be worse.” And my personal favourite, “She doesn’t look sick. Maybe she’s got a less severe kind of CF”. Most days, I tend to agree. Katie is doing well. She’s a little spitfire. She’s stubborn, tenacious and above all, she’s healthy. For now. But the truth is, she is sick. She needs her daily treatments. Without them, her health will degrade in a hurry. And, unless a cure is found, she will likely die from this disease at a younger age than any of us would like. And for the record, no, there is no "less severe kind of CF".

But… for now, it’s not as dire as it sounds. Things COULD be worse. And she IS doing okay. But the question remains: for how long? We live every day in denial. Maybe CF won’t catch up with Katie. Maybe she will be one of the lucky ones that lives a full life, growing into adulthood, getting married, having kids, having grandchildren. Hopefully.

In the meantime, we live each day to the fullest. We enjoy our time together as a family. We learn as much as we can about CF. We pray for a cure sooner rather than later. We fundraise and raise awareness in the hopes that it will make a difference. We do her treatments religiously. And we thank God for the time that we can spend together as a family.

Follow us for the next few days as we share our personal story of learning and accepting Katie's CF diagnosis.

Here is my post schedule for this series:

1. Intro (this post)
2. warning signs
3. family doctor & celiac clinic
4. Sweat test at the CF clinic
5. Diagnosis
6. My nightmare the night after the diagnosis
7. First clinic visit at McMaster

I'll try to provide a new post in this series every weekday until it's complete. Be sure to check back daily.

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:
Sponsor Todd Dow in Great Strides 2010

Help us make CF mean "Cure Found".

Todd, Julie, Noah and Katie

Great Strides 2010 - join us in fundraising for a cure!

Folks,

As many of you know, my 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 30 2010, the Canadian Cystic Fibrosis Foundation 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:

Also viewable here:http://www.breathingasafamily.org/2010/03/team-katie-great-strides-2010.html

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 with her.

Here’s a brief list of her regular medicine intake and treatment regimen:

• approx 15 pills a day (enzymes - they help Katie digest food);
• vitamin supplements twice a day;
• 2 to 4 Pediasure nutrition supplement drinks each day;
• Nebulizer + medicine - basically, a mist mask that Katie wears twice a day for 15 minutes each time;
• Percussion treatment - 15 to 20 minutes of hitting her chest and back - twice a day;

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 the Canadian Cystic Fibrosis Foundation’s largest national fundraising event. Walk with us on Sunday May 30 2010.

To assist, you can:

1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 30; and/or
3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 30 at Safari Niagara in Stevensville, click here:
http://my.e2rm.com/TeamPage.aspx?teamID=146408&langPref=en-CA

To sponsor me directly in my fundraising efforts for Team Katie, click here:
http://my.e2rm.com/personalPage.aspx?registrationID=820204

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

Thanks!

Todd, Julie, Noah & Katie Dow

Welcome

My name is Todd and my daughter Katie (who is now 2 years old) has Cystic Fibrosis. My wife Julie and I learned of this diagnosis on Tuesday September 30 2008. Julie knew before I did – mother’s intuition, I guess. I lived in denial until the medical diagnosis had been delivered to us on that fateful day. Katie’s older brother, Noah – three and a half years old – understands that Katie has CF, but he doesn’t yet grasp the full impact of what this means for our family.

Our family has changed since that late September day. This blog is a chronicle of these changes. Not sure where this conversation will go yet. As with everything in the future, only time will tell.

We’ve aptly titled this blog, “Breathing as a family”, as CF doesn’t only affect Katie – it affects all of us, as a family. And, as a family, we have learned, and will continue to learn, how to live with this disease together.

We invite you to share this journey with us. Our goals for this blog are fourfold. It provides a place for:
1. us to share our hopes, joys, celebrations, frustrations, sadness and everything in between;
2. our family and friends to keep up to date on what’s going on with us;
3. others to share and learn – especially other families that are living with Cystic Fibrosis; and
4. raising awareness, fundraising and building community;

So please, visit often. Feel free to comment and share in the discussion.

Thanks for visiting and talk soon!

Todd, Julie, Noah and Katie