Tag Archives: cardiomyopathy

Contracts Go Out to 18 Designers!

Posted on by
3

My heart is so full right now. I am so touched by the generosity of my fellow designers, willing to donate hours of work to raise funds and awareness for childhood cancer.

It has been a rollercoaster of emotions these last few days. One child, who’s FB page I have been following, past away from the same form of cancer my daughter had. Another child of only 7 y/o received a VAD, just like Bronwyn’s, for the same reason she did, chemo induced cardiomyopathy.

It’s all so close to home. So much reason to wallow in sadness.

Then I turn to my work on the Gold Ribbon Craft Project and I find purpose and hope in my designs. I see love and caring from all the beautiful designs submitted by others. All but one of the designers who have contributed are strangers to me. They are not participating because we are friends or because I asked them. The patterns they are working on are an expression of their desire and need to make a difference for children fighting cancer today and those not yet diagnosed.

The positive responses I continue to receive from these giving souls spreads a warmth through my weary heart.

smashingwalnuts sneekpeek-1

Here is a sneak peek of the Smashing Walnuts skirt in honour of Gabriella Miller

I’m in militant mode!…..

Posted on by
Reply

Don’t tell me that it can’t be done!  I have been working on gathering patterns, knit/crocheted in gold to publish a collection for childhood cancer awareness with all proceeds going to childhood cancer research.

It has been slow going…..to say the least.

I know…….I’m a nobody in the fibre world, just another enthusiast among millions.

I know…….designing patterns is a lot of work and a big ask, especially when asking people to do it for free.

AND I know…….children are dying around me because they have run out of options due to lack of research!
…….children, I personally know, are being diagnosed with cancer for the first time. Two in the last month! Add those to the 1,500 children diagnosed this year in Canada.
…….children, I personally know, are relapsing because what is being done is NOT WORKING!
…….children, I personally know, like my daughter, are suffering from huge, chronic and life-threatening health problems because the toxic treatments damaged them so severely. [98% of ALL childhood cancer survivors suffer this fate.]

I am SICK of this crap!

Yes, I know that a collection of patterns is not going to change the world BUT
maybe, just maybe it could help more people become aware of the issues,
maybe, just maybe the funds raised will help find better treatments.

I can’t do the research. I can’t change the policies that allocate pennies to childhood cancer research when compared to the millions invested in adult cancers. I can’t make my daughter all better.

BUT this I can do! Don’t tell me I can’t! Don’t tell me there are not fibre designers out there who, like me, are willing to donate some time to try and make a difference. I know there are! I know the fibre community to be full of big, generous, fluffy hearts of love! I have found a few but not enough. I keep running into roadblocks and people telling me what a difficult thing I am trying to do.

So I am doing what I should have done months ago…..

HELP!

I am asking all my friends and followers to please help! Looking for something good to do this Christmas? This is it: Ask your friends and followers if they can help.

I need DESIGNERS to donate a knit/crochet pattern, in gold [Gold could be anything from delicate and creamy to bright and happy to dark and splendid and it is the color for childhood cancer awareness.] for free. Contact me for more details.

I need YARNIES to dedicate a colourway in September, 2014, to childhood cancer awareness. [Not looking for yarn donations.]

I need a LOGO DESIGNER to donate time and talents.

I need EDITORS to donate time and talents.

I need PROMOTERS to donate time and talents.

I need KNITTERS/CROCHETERS willing to donate time to make some things to help with promotion.

I need ……SMART PEOPLE, with big hearts, willing to help, to donate time and talents, to do whatever needs to be done.

Thank-you and Merry Christmas!

goldcraft-1

ps: still working on naming the project……really need a logo designer ASAP.

Dear Matt Smith, The 11th Doctor:

Posted on by
Reply

Optimist-hope

Thank-you. Thank-you for entertaining us, for being with us, during the worst hell of our lives. For 22 months now we have been medically displaced, 1,000 miles from home as my 16 y/o daughter first battled cancer, then heart failure caused by the chemo and now lives on the edge of a sword with an electric heart pump [LVAD] as she waits for a heart transplant. Your incarnation of The Doctor, with his whimsy, humour, optimism, hope, childlike playfulness along with the wisdom and deep sorrow that comes with suffering is just what we needed. Throughout the long, heart wrenching months you have looked down on my precious hero from the poster that has been transferred from hospital to hospital to ICU to CCCU to room to room [to room…etc.] to apartment at Ronald McDonald House and now the small apartment we temporarily relocated too in downtown Toronto as this wait for a heart could take another year or two.

Dr. Who has been a constant light through it all. We have watched many seasons over and excitedly waited for new episodes that did not disappoint! We have laughed, cheered, gasped and wept. You made my sick child smile and laugh and distracted her from her pain and misery. I have loved other Doctors but none hold on to my heart like you. To me you are and always will be “the optimist, the hoper of far-flung hopes, the dreamer of improbable dreams.” <—This. This we have in common. During the hellish weeks we were continually told Bronwyn would not live we didn’t believe it. We believed the impossible and the impossible came true. Thank-you for being there. Thank-you for helping us through.

Sincerely: A Grateful Fan

ps: If Bronwyn could have a Make a Wish wish it would have been Dr. Who themed, off to Cardiff for the Dr. Who Experience and maybe even the studio, maybe even a meeting….someday, maybe.

My Doctor Who Story

I remember seeing snippets of Dr. Who as I walked by the TV as a young adult. I was aware of Dr. Who but wasn’t interested in science fiction at the time. [It was Barry that changed my mind on SF when he rented BSG many years ago.] When the show was revised I started watching it. It was good. I liked it but my girls were young [8 and 10] and I was sensitive about them seeing anything too scary. I made it halfway through the second episode and decided Cassandra was too icky [a human stretched out like a buffalo hide] and turned it off. [Yes, I regret it.]

It was a few years later that Sinead reintroduced Dr. Who into our home. She had discovered references to it online [most likely tumbler]. I was sucked right into the 10th Doctor storyline with Rose and soon the girls were making sure I saw every episode of the new series. It wasn’t until Donna entered the scene I became a true fan. [LOVE the Dr. Donna!]

Then it seemed just when I discovered the magic of Dr. Who everything was going to change with a new doctor coming. I don’t remember exactly when I my new obsession started but it was before Matt Smith was chosen. I wasn’t really sure how this was going to work. Being a new fan I didn’t quite understand how the Doctor could change so much and still be the same character. The regeneration scene from the 10th to the 11th left me speechless and concerned that my new favourite show had just been destroyed. I needn’t have worried. I believe the 11th Doctor’s interaction with the child, Amelia Pond, helped a lot to endear him to me so quickly.

I had heard my girls and other fans talk about “my Doctor”. It seemed everyone had one incarnation of the Doctor that they especially liked, one they felt most connected with, a favourite. I didn’t have one…..until Bronwyn’s diagnosis. As I described in my letter above, Matt’s Doctor seemed to have been created just for us, for me.

I generally do not idolize actors, singers, musicians and such. They are just people doing their job to entertain us. I have had the opportunity, during Bronwyn’s health journey, to meet some famous people and although these moments were thrilling they were not emotional or life changing [except when we met Maggie Q for obvious reasons. In case you don’t know she pays our rent while we wait for a heart.]. I can’t think of any famous person whose presence would make me lose it……except for Matt Smith. Such is the connection I feel with his Doctor.

I’ll finish off with something Dr. Who and I have in common. We are both 50. We have both had to reinvent ourselves several times due to life circumstances. We have rolled with the punches and enjoyed our successes. We accept our past and have lived through tragedy but won’t let it hold us back. Our drive, imagination, dreams and optimism will continue to propel us forward into the future. Today I raise a glass to us. I think we are both pretty, damn awesome.

Taken at Easter, 2012, this picture shows the Dr. Who poster collection on Bronwyn’s hospital room wall at the Children’s Hospital in London, ON. She took the shot, from her point of view, in bed. Sinead gave her the large one for her birthday and is the poster that has followed her everywhere and now hangs in the bedroom she shares with her sister in our Toronto apartment. No matter what we were going through the Doctor and Amy were always there, ready to help.558527_10150639086436300_71722662_n

A Family’s Greatest Sadness is our Greatest Fear.

Posted on by
1

1401408_735106039850441_1242407569_o
Click here to learn more about Macie from TheTruth365.

When Bronwyn started treatment I had to sign off on all the chemo drugs used on her. One listed heart failure as a rare side effect. When Bronwyn drew the short straw on that one, only two weeks after her last treatment, we were stunned. In the months since I have learned much more about the treatments given to children and that heart failure is really not that rare. In fact, St. Jude’s discovered that heart issues are quite common in children treated with certain chemo drugs.

Our hearts go out to Macie’s family. I never knew Macie or her family. In fact, I never heard of her before TheTruth365 posted this picture and Macie’s story today yet my heart is broken. I must confess it is hard to see stories like this and not be freaked out as well as destroyed. There is a mix of brokeness for the family of another child taken by heart failure due to chemo and stabbing fear that this actually happens.

To really understand the cruelty of the treatment for childhood cancer that we accept as normal please click on the link and read the comments from other parents who have watched their child damaged by chemo suffer. It’s an eye opener. We need to find better treatments!

Childhood Cancer Survival: The Reality Beyond the 80%

Posted on by
1

The 80% survival rate for childhood cancer touted by governments and high profile cancer charities feels like a lie to childhood cancer survivors and their families and Rachel’s story tells why. This happens more often than not. The more I hear of medical issues most [as in 98% of] survivors face I feel a twinge of gratefulness that Bronwyn’s only issue is a heart transplant. If the only price she has to pay for cancer is an operation then she will be fine. Logically I know my optimism is naive. The majority of side effects from childhood cancer, called late effects for a reason, happen years later.

Rachel had a few good years before her effects took hold. We have to be thankful for every year, every day, of “good” that we have.

This is why better treatments are needed. Since Rachel’s treatment hardly anything has changed in childhood cancer treatment. Rachel tells the story of so many survivors. This is not the future I want for my child, for your child, for ANY child.

Please click and read: Rachel’s Story as a Childhood Cancer Survivor

906800_730068427020869_417634156_o

Link

Childhood Cancer Awareness Month: 8 Brutal Truths to Choke On

Why so little is being done to help our most vulnerable victims of cancer? This Huffington Post article gives clear answers.

When I began researching childhood cancer and what was being done about it I was broken-hearted. Cancer and it’s treatments, mostly adapted from adult cancer research, is so devastating on young bodies that were perfectly healthy until, by chance, cancer invaded. This article clearly states the reasons why survival rates and treatments have not improved in decades. My research matches the points Suzanne Leigh makes here. I concur with every word.This is what chemo does to our children

The September is Childhood Cancer Awareness Month Hat

Posted on by
2

Here it is! The first pattern in the Knitting for Gold project and it is free!!hat for pattern

Get the pdf here: The September is Childhood Cancer Awareness Month Hat 

There will be three free patterns in all, released over the course of the next few months leading up to the publication of the book. For the first time when one does a pattern search on Ravelry using the phrase, “childhood cancer”  a result is presented. This pattern has been a long time coming…..

It was more than a year ago, while Bronwyn was recovering from VAD surgery, I was consumed with this idea of raising awareness for childhood cancer. First I looked for patterns for childhood cancer……nothing! How about just cancer patterns? Pink everywhere! Great! Just change the colour and, voila!, you have a childhood cancer awareness scarf, bag, hat, sweater, washcloth, socks, headband,  cup cozy, water bottle cozy, tea cozy……and even a chemo hat wearing, chick shaped Cadbury easter egg cozy. I have knit a couple of breast cancer items for friends like the Boobie Scarf and  Tit Bits ……ya…….neither of those transfer well to childhood cancer. Hmmm. Why are there no patterns designed for childhood cancer awareness?

Hey! That’s what we need! Patterns designed for childhood cancer awareness! Boom! That’s what I can do! Ya, I’m just one of millions of knitters. Ya, I’ve never designed a pattern. I’m no one special in the fibre community but something I have learned in our childhood cancer journey is anything is possible. You just have to find the right people to help. I felt confident I would find the right people in the warm, creative and passionate community of fibre enthusiasts.

I started talking to people…..a carefully selected few. Just bounced the idea around a bit and see what happens. People loved the idea but  no one had a clear idea of where to start. I had a feeling it needed to start with me. I needed to make a pattern, I needed to show people what was possible but I didn’t know how. I had no idea where to start with that….. and that is where the idea stayed for months.

In the fall of 2012 I decided it was time I did something for me. Since January 13th, 2012, the day Bronwyn and I were airlifted to the Children’s Hospital in London, ON, my focus had been fully on Bronwyn. My life had ceased. I lived for Bronwyn.

–>Side note: At this point some may like to point out that I have 2 children and that Sinead needed just as much help. I agree. Sinead was in Thunder Bay, finishing grade 11. She came for a couple of visits while Bronwyn was being treated for cancer but, truth be told, I didn’t have enough for her and Bronwyn. When Sinead had to go back to Thunder Bay, after her first visit to Bronwyn in London, in January, 2012 I told her as she cried, “This is going to be the hardest thing any of us have to do. One day this will be over and we will have the luxury of falling apart but that is not this day. You do whatever you need to to get through. Ask for help when you need it because when this is over I need you to be there. I need you to still be Sinead.” I made sure she was surrounded by supportive family and friends and always knew I loved her, was proud of her and she was incredibly important to me but she had to know I could not micromanage her life anymore. She needed to take charge and be responsible for herself. She was and she is amazing! Bronwyn’s story is incredible but there is a whole other story here, Sinead’s Story, and it’s super!

I joined the Downtown Knit Collective, a knitting guild that met within walking distance of Ronald McDonald House… easily assessable. It met once a month… I think I can handle that kind of commitment. They also organized workshops and a Knitter’s Frolic. I didn’t know what that was but it sure sounded fun! It was a breath of fresh air to me. A room packed full of knitters, at least a 100, all click-clacking away while listening to the president give announcements of upcoming speakers and events that sounded too good to be true and congratulating members on their latest publications, names I knew! Designers’ names I recognized from magazines and Ravelry. Wow! Then a few members showed off the wonderful things they had knit over the summer and then the guest speakers…..indie dyers! Two of them! Dye Version and Indigodragonfly. They talked about their business and yarn and new colours for their fall lines…… It was heaven! No one talked about hospitals or doctors or cancer….just fibre.

I walked back to the House glowing. I had found my people!

In October, 2012 I discovered there was a convention for crafters, the Creativ Festival! It was being held in the same building the Fan Expo was in. The best thing I had done that summer was take Bronwyn and Sinead to the Fan Expo shortly after Bronwyn was discharged. It was such a pleasure to make something great happen for them. The best part was sitting in on the Q & A panel with Matthew Grey Gubler and A. J. Smith. The girls are both HUGE Criminal Minds fans. We saw John Barrowman [Dr. Who and Torchword] and John Rhys-Davies [Lord of the Rings] and Stan Lee passed by us so close I could have kissed him. It was wonderful treat for them.Aug 25 [Bronwyn, wearing the shawl I knit her, Bigger On the Inside, and Sinead waiting eagerly for Matthew and A.J.]

Well, the Creativ Festival was my treat!creativ festival -50
[The crazy, colourful, happy crochet display at Creativ Festival, 2012.]

I wandered around, all by myself and drank it all in. The displays, the artwork, the fashion shows, the shopping! I came across a beautiful display of what was clearly hand-dyed yarn but in an amount I was not accustomed to seeing all in one place. Who is it that can create so beautifully in such a large quantity? No surprise I was drawn in and fondling it all. I complimented the vendor and asked his name.

Rhichard Devrieze.

Huh. Never heard of it. I consider myself pretty savvy and knowledgeable in the yarny world. How is it possible that an indie dyer, who clearly is not a beginner, who has so much stock and experience is not known by me? I asked. He answered. Suffice to say he used to dye for another company but they parted ways and he was flying solo. I was an instant fan! He noticed the pins I had on my jacket. I ended up telling him why I was in Toronto. Instant friends!

creativ festival -64
Rhichard in front of his display with his sister, Helena, and friend, Maureen.

Rhichard became one of those “right” people to help me. He took my flier explaining my project with him on business trips to other conventions. He displayed our picture and talked about the project. Nothing seemed to come of it. I tried to sum up the courage to approach yarnies and designers at DKC meetings but just ended up being the weird lady who was hanging around trying to be casual while looking for my moment. But I was not discouraged. I knew it would happen……

…….at the back of my head that niggling feeling that I needed to lead by example would not go away.

Jump ahead to August of 2013. September was approaching. The niggling feeling became an unavoidable urge. With the pressure came clarity. I could do it. I would do it! What to do? I grabbed my laptop and went directly to Ravelry’s pattern search. What was the most popular, unisex pattern category? Hats. Ok. I would design a hat. It needed to be attractive to both men and women and lightweight so it could be worn in September. Rhichard’s fingering merino would be perfect. I already had several gold skeins on hand. I worked about a day on figuring out the basic ribbon cable and cast on. Within a few days I had a pattern. Sheesh, that wasn’t so hard.It's coming-1

Then came the pattern testing…… turns out designing is a lot harder than it looks. My testers were wonderful and patient with me. I found my first round of testers by posting a request to the facebook page we keep friends, family [and many supportive strangers] up to date on Bronwyn’s progress. Twenty- two testers stepped up. Some discovered the cabling was beyond their present skill and others didn’t have the time to test immediately but there were enough who got the job done, find errors, inconsistencies, unclear passages and a volunteer to transcribe my chart into words.

I was ready to look for the second round of testers in the Ravelry group, The Testing Pool. This is a group, full of people willing to test out patterns before they are published. I was eager but intimidated by the whole process. I needn’t be. It was another wonderful experience. The testers that volunteered understood my cause and were willing to help. The wording was further clarified. I discovered I cannot edit my own patterns as I know what I mean and have difficulty wording instructions in a way that others can get it. There I met Renee Burton, a designer who knows her stuff and also a left-handed knitter. Instant bond! I was having difficulty with the sizing of the hat. Which size would fit what size head? It required math and was beyond me. She figured it out, did the math, created charts to show it and gave me permission to use them. I was ready to publish.

On September 1st, 2013 I uploaded my hat to Ravelry. The Knitting for Gold project has officially begun.barry and bronwyn and hat-7 barry and bronwyn and hat-2

Gold Ribbon Craft: A Thesis

Posted on by
1

The purpose: To increases awareness of childhood cancers which will lead to more money for research to find better treatments and a cure.

The need: One in 330 children will be diagnosed with cancer before the age of 20. One in five will die within the first 5 years of diagnosis. Many more die later from relapse or side effects of treatments. Ninety-eight percent of all survivors will suffer from at least one chronic health issue and by age 45, 80% will have a critical or disabling health problem. Most of these health issues are side effects of the treatment. In terms of potential years lost childhood cancer comes second only to breast cancer. Four percent of the NCI’s research budget goes to all childhood cancers. In Canada three percent is given. Big pharma puts little research into childhood cancers as they are not profitable. The underfunding is a worldwide problem.

The method: Gold Ribbon Craft is a collection of gold themed knit or crochet patterns to help raise awareness. Gold could be anything from delicate and creamy too bright and happy too dark and splendid and it is the color for childhood cancer. I am looking for designers and yarn dyers who are willing to donate their talents for this cause. Patterns will be quality designed items that are a pleasure to knit and crochet and can be worn and thereby seen by others, designed primarily for adults with a few for children or sized for all. Although some items may be suitable to be a quick project for fundraising or charity this is not the primary goal.

Those passionate about knitting and crocheting beautiful items to spread awareness are looking for well-designed patterns they can be proud of wearing and giving.

The deadline for designs and finished objects is April 15th, 2014. Publishing date will be in September, 2014.

And that’s the plan so far…..

The idea for the gold project came to me last summer, when Bronwyn was recovering from VAD surgery. I felt the crushing need to do something to improve childhood cancer treatments so no other family has to endure what we have. You can read about Bronwyn’s story in the Knitting in a Hopeless Place posts. Here is the capsule version: Bronwyn was diagnosed with AML, a difficult to treat leukemia, on January 15th, 2012. She endured four months of intense in-hospital treatment and was cancer free but on May 16th, while still recovering in the Children’s Hospital in London, Ontario she suffered chemo induced cardiomyopathy and was airlifted to Sick Kids Hospital in Toronto where we were told she would die as her heart was too weak and her blood counts were too low to be put on life support. For two weeks the doctors and Bronwyn did everything possible to stay alive on the chance her counts would rise and they did. On June 3rd she underwent open heart surgery to have an LVAD put in. It is a small heart assist device that will keep her alive until she qualifies to be put on the transplant list on January 15th, 2014 and through the wait for a new heart.

This project is very personal to me. I signed my daughter up for torchure because it was the only option available. If you know anything about chemo you know I do not exaggerate. She didn’t go to the hospital once a week for a dose. She had 2-3 different chemos running through her central line over 2 1/2 – 3 hours every 12 hours for 10 days during the first chemo round. This is not unusual for childhood cancer treatment. She was given three weeks for her blood to recover, most spent in hospital as she had no immune system, before being put through another round of chemo lasting days. This went on for four months, four chemo rounds. Blood counts took longer to recover each time. We met a girl whose blood counts didn’t recover for months after the same treatment. This is why the doctors didn’t believe Bronwyn would live long enough to get the invasive treatment she needed to survive heart failure. I hope you never have to tell your child she may die and help her make end-of-life decisions. It’s hell. The recovery from VAD surgery, after being sick for so long was brutal but we were grateful she had something to recover from. Her first steps on July 6th, 2012 were a celebration. She was discharged on August 9th and tomorrow she will start grade 9 making her the first child in Ontario to attend public school with a VAD.

Before cancer Bronwyn was a healthy athlete. She had no heart issues. She was fit and ate a wholesome diet. She was a Highland Dancer competition
[Highland Dance Competition, Nov. 5th, 2011]

and competitive curler. curling team
[Team Keetch, 2011]

She was handpicked by her coach for a team with Olympics as the goal. It has been hard to watch the team go on without her but they still wear an orange ribbon [the colour for leukemia] on their team jackets.

She is a leader camp gitch
[Junior Camp Counselor at Camp Gitchigomee, summer, 2011]

and a good friend.
bedroom
[Bronwyn and Haylie in Bronwyn’s bedroom]

Her friends, dance troupe, curling team and kids and staff at Camp Gitchigomee love her and miss her and Bronwyn misses them. All she wants is to go back home.sleeping giant-1
[The Sleeping Giant in the Thunder Bay harbour. Home.]

It’s what we all want…..but we have a different road to travel. So here we wait in Toronto for a new heart and make the best of it. Bronwyn will go to school, Sinead and Barry will work and I will do what I can to raise awareness. I am committed to getting this collection of patterns published. I must make some good come out of our tragedy. People will say that things happen for a reason. I disagree. My daughter got cancer because we live in a world of sickness. If there is any reason to be found it is because we will create it.

I know the fibre community to be full of passion, generosity and creativity. The Knitting for Gold project is the perfect expression for it. knitter's frolic-1
[The Yarns of Rhichard Devrieze table at The Knitter’s Frolic in Toronto. Rhichard has been a great support of this project, printing and handing out these Knitting for Gold fliers and talking to fellow dyers and designers about it. It so touched my heart to see he had the picture of us, taken at the Creativ Festival, fall, 2012 where we met, framed and on his table as well.]