Living Fearlessly, Loving Fiercely

alifetimeofcf:

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

I won’t let Cystic Fibrosis defeat me.

 Or those I Love

“RAWR, I’m a hungry T-Rex waiting for surgery.”

My daughter, Nicole, has Cystic Fibrosis, she calls the Alberta Children’s hospital HER hospital because we go there so often.

We know every Respirologist that works there, in fact, we are able to recognize most of the staff who work on the 3rd floor.

For each appointment, Nicole sees a Nurse, a Pulmonary Function Technician, a Respirologist, a Gastroenterologist, a Dietitian, a Social Worker, a Physiotherapist, a Pharmacist and sometimes a Lab Tech who will poke her and take blood. As you might imagine this appointment takes 3 or 4 hours, every three months and is on a school day.

The staff in the pharmacy know us so well, they needn’t ask for a name when we pick up medication. Nicole’s medications come in a grocery sized brown bag and range from about $900 - $4500 for a three month’s supply, depending on her state of wellness.

On a healthy day, Nicole takes roughly 20 pills, a nasal rinse, a nasal spray and has to endure an hour of physiotherapy. Nicole is only 5 years old.

The Alberta Children’s Hospital Foundation staff stop to say hello when they see us in the hall ~ they know our family and ask about each of my 5 kids by name.

I visit the hospital cafeteria often enough that a few of the cashiers give me staff discount.

This picture of Nicole is from September 2010, she had surgery that day and one of our Respirologists snuck into the operating room to perform an extra procedure called a bronchoscopy, where he inserts a camera into Nicole’s lungs to check for inflammation, excess mucus and colonization of germs, he then takes a sample of her deep lung mucosa for pathology. This happens EVERY time she goes under anesthesia. Next time? June 1st.

This disease is stealing from us. Cystic Fibrosis is stealing away from our time together. Cystic Fibrosis is stealing Nicole’s childhood. Cystic Fibrosis is stealing precious school time. Cystic Fibrosis is stealing my Daughter but worst of all it will steal her breath, her life one day if we don’t stop it.

You can help.

Only 2 and a half weeks until we walk for a cure. Join our Team and walk virtually, find a walk near you and register to walk in your own city or donate to our team, Team Nicole.

Please help us make CF stand for Cure Found.

Join us in walking for a cure!
Our team, Team Nicole, is in Calgary, Alberta, Canada and can be joined and/or donated to here:
http://my.e2rm.com/TeamPage.aspx?teamID=204041&langPref=en-CA

You can even join our team if you are in a different city and walk under the “virtual” location, or walk in your own city/town:
https://secure.e2rm.com/registrant/search.aspx?EventID=63162&LangPref=en-CA&Referrer=http%3a%2f%2fwww.cysticfibrosis.ca%2fen%2fGreatStrides%2findex.php

If you’d rather support the American foundation, walks can be found here:
http://www.cff.org/Great_Strides/

There are also walk locations in the UK:
http://www.cff.org/Great_Strides/

And Australia:
http://www.cysticfibrosis.org.au/greatstrides

I’m sure there are many more. Please check your local Cystic Fibrosis chapter for details. We need a cure today!