Wednesday, September 22, 2010

Research, Hope and Change--Canadian CF Mom

Michelle is a fellow blogging Canadian CF Mommy.  She is the Mom to Elina, a 1 year old girl with cystic fibrosis.  She recently blogged about an opportunity she had to visit Innovotech in Edmonton. I will let Michelle's post explain.

Please read the following blog post (direct link:CanadianCFmom ) and I encourage you to write to your local MLA requesting that the bioFilm PA test be covered by Alberta Health plans--I have.  I also encourage you to visit Innovotechs website to learn more.

Research, Hope and Change

Last week I had the pleasure of having lunch with Amanda Stadel from Innovotech. We had a wonderful lunch chatting about the CF community in general, Elina and what it is like for me to be a CF parent. Hope is what drives me forward each day. I am so pleased to have a biotechnology firm in Edmonton that not only has taken an interest in helping to control a common infection in CF lungs called Pseudomonas Aeruginosa but also in personally getting to know our family and other CF families in the Edmonton area.

My mom, me, my dad and my aunt at Innovotech

Remarkably, this was not my first meeting with Innovotech, a few months ago I had the amazing opportunity to be invited to their offices. What they do is very technical so I’ll do my best to explain it – but if you’d like more information I suggest you defer to their website. I’d also like to point out that in no way am I providing medical advice or attempting to provide a medical opinion. I write this so that the people who love Elina can find hope and so that anyone else with CF reading our blog can share in our hope and celebrate the success that happens every day thanks to research and medical advances.
All that being said, Innovotech invited us to visit with them and learn more about a test they use to better predict what antibiotic or antibiotic combination will be best at killing Pseudomonas Aeruginosa (PA), which is a common complication and is “associated with severe lung infections in people with CF. It can be difficult to treat, and is becoming increasingly resistant to antibiotics.”[i] The test is specific to each patient and further specific to each infection that patient might have.
Damian (Innovotech), my mom, my dad, my aunt, me and Ken Boutilier (Innovotech)

Biofilms, as described to us by Damian at Innovotech, are like the green slime that cover rocks in a river. They are bacteria that cling together and are much harder to fight than a free-floating bacteria. Susceptibility tests (throat swabs) are designed to work on free-floating bacteria. Innovotech has designed a susceptibility test for biofilm infections. “Biofilm infections can be 1000 times more resistant to antibiotics than conventional infections.”[ii] When a patient is treated with antibiotics and it is not the right antibiotic to fully kill that infection it can lead to resistance. The test developed by Innovotech, bioFILM PATM, can help to guide doctors to the right antibiotics to treat biofilm infections.
We have all heard of antibiotic resistance and the concerns that it creates in our healthcare system. This is an even greater concern for CF patients as they face chronic lung infections. For the most part these lung infections are treated with antibiotics. Once the antibiotics stop working options for CF patients start to run out. In Elina’s first year of life she already was on two courses of antibiotics for very minor Staphylococcus Aureus infections.
While right now Innovotech is using this technology primarily for CF patients, it may provide many other important roles in the future. For us it was a good visit and one that helped us to feel more empowered as Elina’s health advocates by giving us the knowledge that should Elina ever culture PA we can ask her doctor if this test would be right for her. Right now the bioFILM PA™ test is not covered through healthcare, Provincial Health Plan, or Blue Cross. The cost of $450 is the responsibility of the patient. Please click through to Innovotech’s blog to read more about their bioFILM PA™ test.
I can’t say how much it meant to me to be invited into their lab and for the staff at Innovotech to take the time to talk to us about their work. I feel so grateful that there are people who are fighting for the future of all CF patients.

If you’d like to see this test become a standard for patient care and the cost be covered/reimbursable through Alberta Health Plans please contact your MLA. Let them know how you heard about bioFILM PA™; tell them how important you feel this test could be to your future care or the future care of someone you love. If you are comfortable discuss how CF has impacted your life and the costs that are already involved for a family that is living with CF. Help make a positive change for the future of CF care in Alberta.

Please write to:

Honourable Gene Zwozdesky (PC)

Minister of Health and Wellness

Legislature Office

#208 Legislature Building

10800 97 Avenue

Edmonton, AB

Canada T5K 2B6

Constituency Office

8207 Argyll Road

Edmonton, AB

Canada T6C 4B2

Dr. Stephen Duckett

President & Chief Executive Officer, Alberta Health Services

700 Manulife Place

10180-101 Street

Edmonton, AB T5J 3S4


[i] (Canadian Cystic Fibrosis Foundation 2009 )

[ii] (Innovotech 2009)

Canadian Cystic Fibrosis Foundation. A New Approach to Treating Infection. 09 29, 2009 . (accessed 09 7, 2010).

Innovotech. bioFILM PATM first test to help in fight against serious lung infections. 07 28, 2009. (accessed 09 7, 2010).

Reposted with permission.

Sunday, September 12, 2010

Wash Your Hands

Since Cayden's birth, we have had two requests from our friends and family:

1. Please refrain from visiting our sweet Cayden when feeling ill.
2. Everyone must wash their hands before touching him either with soap and water or hand sanitizer.

These requests are not meant to offend, only to protect Cayden's health and keep him well. Simple, right?

Most everyone has been really supportive about this, calling when they or their kids are sick, washing hands, etc.  Cayden is blessed to have so many people who work hard to keep him healthy.

Sadly, a few people still seem to have issues with this. 

I wonder if it is because they choose not to understand Cystic Fibrosis or if it is because they see Cayden is thriving so it doesn't matter anymore.  Is it because they are offended by us asking to wash hands?  Do they just simply not care?  I really do not know. 

It is simply disrespectful to myself as Cayden's primary caregiver and to baby Cayden himself.  Phil and I work so hard to keep Cayden looking as healthy as he is.  Cayden has endured more than most adults do in a lifetime and he is only 11 months old. He is just an innocent baby. 

If you cannot respect his health then we cannot possibly be surrounding him with the most loving and positive environment to thrive in.

We want Cayden to be surrounded by family and friends.  To be surrounded by as much love as possible.  People who want him to be as healthy as can be.  Cayden deserves that. 

I cannot force you to wash your hands.  It is your choice. I can however respectfully ask you to stay away from Cayden if you choose not to. It's all about keeping our Cayden here and healthy!

Saturday, September 11, 2010

11 Months

Where did little baby Cayden go?

{October 21, 2009}

Who is this wild little boy that doesn't have time to get his picture taken?

It couldn't be my Cayden!

No, my Cayden always sits still for picture time:

<3    <3   <3

When I bought these picky sticky birthday stickers, I never thought about how hard it would be to catch tackle an 11 month old and have him sit still for one second!

11 amazing months have flew by, I love you Cayden!

Wednesday, September 1, 2010

Wordless Wednesday

Day at the beach:
Half Moon Bay, California