A Family’s Greatest Sadness is our Greatest Fear.

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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!

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Childhood Cancer Survival: The Reality Beyond the 80%

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

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Gabriella’s Three Wishes and Greatest Fear

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What would you wish for if you were terminally ill?
In this four minute video by TheTruth35, Gabriella tells us what her wishes are.

This little 10 year old will astonish you with her answer to what her greatest fear is. Her wisdom and bravery take my breath away.

My World of Sadness, a rant and an action…..

marco-1Love For Marco

The Rant: In the last 24 hours the we lost two precious children to childhood cancer simply because they ran out of options. [About 10 children in North America die everyday from cancer.] I know the tendency is to say that medical science just hasn’t reached the point where more options could be developed but I can’t say that. With so little being done to find better treatments, worldwide, by governments, large charities and practically nothing by pharmaceutical companies, and so many good leads and brilliant researchers out there with not enough money to go full steam ahead the only reason I can see that these children died is lack of will.

Lack of will by big pharma to do more because childhood cancer treatment is not profitable…..lack of will by governments because more political points are won putting big bucks in adult cancers……lack of will by the largest cancer charities because of high overhead costs to keep bloated offices running and CEOs well paid, all trump the value placed on our children’s bald heads.

The lack of research is not due to lack of opportunity or need or even money. I am continually sickened at the financial reports of charities who boast of doing so much for others while keeping both hands firmly in the money pot to make their lives comfy. Governments, charities and pharmaceutical companies could all find the money needed just by shifting priorities.

We, the public, have accepted the toxic treatments for cancer, that poison both children and adult bodies, with crippling results, because it is all we have ever known. We think this is just the way it has to be. It doesn’t! Science continually moves forward. Breakthroughs and new ideas are continually being found yet the move towards change is painfully slow with damaging and even deadly consequences.

While government agencies and high profile charities push forward the misinformation of an 80% survival rate for childhood cancer, giving the impression that there is little that needs to be done, it is primarily the parents of children with a cancer diagnosis left to push for what is so desperately needed….better treatments, more options…..a cure. In fact most of the childhood cancer foundations created are started by grieving parents. Watching a child die a slow, hideous death from cancer or the side effects of the treatments, propels parents to push aside their grief and do whatever they can for others. Even those of us lucky enough to have surviving children are so scared by what we saw our children endure we cannot walk away from the battle.

Yes, it is a battle! We are working against a misinformed public and the apathy of those  holding tightly to the research purse strings…… It is such a difficult, exhausting fight……. The community of childhood cancer is full of sadness and pain and a deep feeling of injustice but it is one I can never walk away from. Now that I know what really goes on, the poisonous treatments, the wide array of side effects that go on for a lifetime, the appalling lack of funding, the possibilities for better treatments, the devastation and the hope….. this is a battlefield! …and I will never leave it’s trenches.

Gabriella has asked me, all of us, to stay in this war and I wouldn’t dream of disappointing her.

1412371_719512981409747_2092871295_oMake a Wish with Gabriella via TheTruth365.

The Action: Awareness is the first line of action in the war against childhood cancer. What is important to us must become important to the Powers That Be. Being aware of the issues and spreading that awareness is the starting line and something we can all do!

I’m going to ask you to do ONE thing, yep, just one! Watch this eight minute video by TheTruth365 and then pass it on. That’s it. That’s the starting point. Keep in mind that childhood cancer favours no ethnicity,  life-style or economic status. It is an equal opportunity killer. Even though this is an American video the issues are global.

Please, please join us. This battle will not be won unless those of you who have never been touched by childhood cancer help us. For 16 years of parenting I never knew anything about childhood cancer. I wish I did. I wish I could have been involved earlier. I might have made a difference for my child. Get involved. Make a difference for those not yet diagnosed.

[I know I have ranted on here with no links to any sites or research to back up my complaints. I have provided facts and info in other posts on this blog. TheTruth365 has a fact page here and Childhood Cancer Canada has one here.]

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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

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!

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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