Sunday, 22 April 2018

National Organ and Tissue Donation Awareness Week

It's National Organ and Tissue Donation Awareness Week! Organ donation has been in the news lately with the Humboldt crash and Logan Boulet's decision to become an organ donor - and the family's decision to honor that wish. One of the few positives to come from the terrible tragedy is that through his and the family's decision, 6 people were given a chance of a better life. Of course it's never just 6 people when you consider their families and loved ones as well.

Also, more people have registered to be organ donors after the news of the bus crash which means even more lives are going to be saved. It's an amazing chain reaction after such a terrible situation.

The chances of becoming an organ donor after you die are still fairly slim. You have to die under just the right circumstances which is why it's so important for those who are able to donate, to do so. In the meantime, while you're still alive, there are things you can do to help.

1) You can register to be a stem cell/bone marrow transplant donor (if you're between 18-35). While it's unlikely you'll ever be called, there is the chance you can save someone's life. A stem cell transplant can help cure someone's cancer. Cure!

I was an inpatient at the bone marrow transplant ward of the VG when they had empty beds and it felt like a first class suite compared to the rest of the cancer floor. The rooms were larger, the nursing ratio was better, the air was specially filtered. It was great to stay in because I wasn't the one needing a bone marrow transplant. The filtered air and better nursing care is important when someone has zero immune system and their body is trying to grow blood cells.

Having my cancer spread into the spinal cord cancer was what my doctor was trying to prevent by injecting me with chemotherapy medication into my spinal fluid. As a result, I spent a lot of time worrying about the cancer spreading and me needing a bone marrow transplant. Thankfully it didn't happen but it easily could have.

2) You can donate blood! I recognize Canadian Blood services doesn't accept everyone but speaking for those who have required a blood transfusion, we really appreciate those who are able.  As someone who has had multiple blood, plasma, and platelet transfusions, I am very thankful to everyone who has donated. It has saved my life.

3) Casually bring up organ donation to your friends, family, and/or co-workers enough times that it no longer seems "terrifying" or "morbid" and they'll be more receptive to being a donor. If no one has ever talked about it, it will be too overwhelming when their loved one dies to make that decision.

Here are a few "fun" organ donation statistics from the Trillium Life Network for you to sprinkle into conversations this week:
  • There have been 49 lung transplants from Jan 1-March 31 this year in Ontario. 
  • As of April 22, 2018, in Ontario, there are currently: 
    •  49 people waiting for a lung transplant; 
    • 39 waiting for a heart transplant; 
    • 1,116 waiting for a kidney transplant; 
    • 226 waiting for a liver; 
    • and 1 person waiting for a small bowel. 
  •  The 2017 registration rate in Ontario was 32%, up one percent from 2016. 
  • While there was a spike in organ donation registration after the Humboldt crash, that number has dropped back to normal so it's important to keep the conversation going.  
And that's my spiel for the week. Donate things!! Harass your friends and family!

This could be your blood saving a person from their own body.

Sunday, 15 April 2018

Two years cancer free!

I had my two year post-cancer hematology appointment on Thursday. The doctor said my bloodwork looked great, then she poked at me to see if she could feel any lumps, and said "see you in 6 months!"

I asked about risk of recurrence at this point and was told it is quite low at this point. I was told I had about a 50% chance of recurrence when I was diagnosed but that has dropped two years out. However, there have been no good long term studies for people with PTLD so she can't say the word "cured."

(With some cancers, it's considered cured if it has not returned in 5 years. Although some doctors still don't like to say "cured" and "cancer" in the same sentence, it is becoming more common.)

Just like there were very few studies to determine survivability rates of PTLD, the recurrence studies into PTLD (to determine the length of time that puts people into the "cured" zone) have not produced very good results. Most of the people tend to die from other non-cancer complications, like rejection or infections, before the end of the 5 years studies.

The sample size of these studies would be fairly small, due to only about 1-10% of the transplant population ever getting PTLD and most people who get PTLD tend to be older kidney or liver transplant patients. When trying to translate that to a young person who had a lung transplant and PTLD, it's hard to draw any conclusions.

I was also told that last year, guidelines came out for the treatment of PTLD. The new recommendations are to have 4 weeks of Rituximab and 4 cycles of R-CHOP. The doctor said I probably would have gotten about 6 cycles of R-CHOP since the cancer was extremely aggressive and because I "handled chemo so well."

I didn't feel as though I handled chemo that well but I guess I don't really have anyone to compare myself to. Two extra cycles of chemo in retrospect wouldn't have changed that much. Well, it would have been two fewer hospital admissions, two fewer "Am I going to die from this"-feeling fevers, and less white-blood-cell-growing pain, so that would have been nice. But now I feel more confident that they got all of the cancer cells with the 8 cycles.

I'm personally concluding that "death by cancer" is now at the bottom of my "how will I probably die" list. Rejection and/or infection has bumped back up to the #1 spot!

Sunday, 8 April 2018

Crafts: Oven Mitts and Apron

I've been on a sewing roll! Apparently once I get started with ideas, it's hard to stop.

I finished my kitchen set with the Hawaiian print fabric! After making prototypes with the fun vegetable fabric to work out the mistakes, I finally made the official set. It's so much more stressful when you actually care about the fabric and only have two yards.

The Hawaiian print apron is reversible because that's what Isaiah asked for. I guess so he can choose the fabric side based on his mood, maybe? Or maybe to match his outfit that day. We saw reversible print ones at a market in Hawaii so I guess the idea stuck.

After looking at oven mitt patterns online, I ended up tracing the oven mitt we have and using that to reverse engineer a pattern. I top stitched a grid to attach the fabric to the heat-resistant fabric. Then I cut out two mitt shapes, sewed strips to hide the edges, added a hanging loop, sewed the two mitts together, turned inside out, and voila! A way to pull things out of the oven without burning myself.

The pot holders were much easier, I just used the extra pieces that were already top stitched and sewed them together with some bias-type fabric I made.

Now I have two aprons after never owning an apron before in my life. The current struggle is to remember to wear it before I start baking instead of after I already have flour all over my pants.

I'm thinking about making a tea cozy and maybe one of those giant double oven mitts with the extra heat resistant fabric I have. I'm not really sure what else to do with it. I don't need more oven mitts. The six I now have seems quite excessive.


I'll be thinking of Hawaii every time I bake.

Sunday, 1 April 2018

Happy Easter!

Happy Easter!! I hope everyone is having a great holiday with friends and/or family and tons of food and chocolate.

Easter cards I made!
I've been practicing my calligraphy with guidance from a few library books.
It takes much longer to write out cards this way. 
An artsy shot of my practice sheets.

Saturday, 24 March 2018

Walk to Make Cystic Fibrosis History

It's that time of year again! Time for the Walk to Make CF History! Well, the walk doesn't actually happen until May 27th but since I've registered, I figured it's time to talk about it.

This year the Moncton CF chapter is having a 5 km run as well as the usual 2 km walk. Isaiah and I are planning on doing the 5 km as part of our "Five 5 km runs this year." I really need to start seriously jogging again if I'm going to make it. Hopefully a few other people will join us this year.

So, my annual pitch of why you should support the Walk or Cystic Fibrosis Canada in general:

1) CF Canada does a lot to fund research into the causes and treatments of cystic fibrosis. Their top three areas of research funding are currently:

Infection research

"Research in infections helps scientists to understand how bacteria and mold in the lungs work and develop better treatments."
 An issue close to Amy's lungs as she tries to prevent infections from deteriorating her lungs.  

CFTR protein research
"CFTR protein research involves studying the structure and function of CFTR proteins with the aim of restoring their function, so that chloride ions will be able to move freely in and out of the cell, preventing the build-up of thick, sticky mucus."
Targeted research programs and partnerships
"Working with others in the CF community to advance knowledge and treatment by matching funds with partner organizations and institutes, and assembling teams of CF experts to lead novel research programs moves the field forward."
There is a lot more information about what is currently being researched and funded on the CF Canada website

Looking at the "Where we invested 2017-2018" list of projects that have been funded, there are many that directly benefit me personally. Like this one from the University of Alberta, Edmonton: The Canadian National Transplant Research Program: Increasing Donation and Improving Transplantation Outcomes.

Most of the projects are for those living with their CF lungs like the one from the University Health Network in Toronto: Personalized microbiology in cystic fibrosis pulmonary exacerbations: Assessing the pulmonary microbiota as a predictor of treatment response.

And many projects will help the next generation of those with CF like this one from McMaster University in Hamilton: Metabolomics for improved screening of cystic fibrosis: better diagnostics without carrier identification.

2) Funding also helps directly with specialized care which is vital in treating CF. Having a specialized CF clinic in Halifax has been a huge benefit to my family. The Halifax team knows the latest research and treatments and the best models of care. Without a specialized team, people with CF would be relying on general practitioners who do not have the time to research all the latest treatments for their complex patients.

Additionally, having access to an entire team of specialists, including a dietitian, physiotherapist, social worker, and psychologist who know the ins and outs of Cystic Fibrosis helps provide a holistic approach to treatment that would otherwise be lacking. The dietitian and I have a pretty solid relationship after years of trying to get my body to gain weight and, now that I'm finally at a healthy weight, discussing diabetes management. She has been indispensable in my care over the years.

3) Cystic Fibrosis Canada also helps fund transplant programs across the country. An issue close to my heart (and lungs...mostly lungs). Thanks to research into medication and treatments, surviving and living well after a lung transplant is becoming more and more common. As a result, lung transplants have become more routine for people with CF who are at the end of their lives and CF Canada is putting more money into transplant research every year. In 2017, Ontario preformed 166 lung transplants, up from 145 in 2016. 

4) Cystic Fibrosis Canada is a strong advocate for those with CF.

The organization advocated for new born screening which "all of the provinces and territories have implemented, except Quebec, which has agreed to implement in 2018." This is important because "early diagnosis for cystic fibrosis through newborn screening allows for immediate intervention and treatment. Early interventions have been shown to: improve height, weight, and cognitive function, help maintain healthy respiratory function and reduce hospitalizations; they may also increase life expectancy." 

CF Canada is also a strong advocate for fighting to get breakthrough medications like Kalydeco©, Cayston©, Okrambi, and TOBI covered for Canadians with CF. "Timely access to CF medications improves health outcomes and helps people with cystic fibrosis live longer, healthier lives. This benefits not only the individual patient and their family, but Canada’s public health system as well."
                                                    - from

5) If nothing else,  a charitable tax receipt will help during tax time!

Donate to my walk page and help me reach my goal of 150$!

Donate to Isaiah's page and help him reach his goal of $50!

Or, if you can't decide between us, donate to the team page and help us reach our goal of $1000!

Thank you, everyone!! 

Team mascot, Cody thanks you as well.