Tag Archives: chemo

Calling all Knitters!

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looking for knitters

It’s time to start preparing for a publicity campaign.

Something that Bronwyn’s cancer journey has given us, that is positive, is the chance to met several celebrities. Most of these meetings can be credited to Gilda’s Club, a charity started in the name of Gilda Radner to give support to those going through cancer treatment and their families. It has shown me that celebs are no different than any of us. They have huge hearts and have no problem using their status to support legitimate, good causes.

The Plan: To knit hats in gold yarn and send them to celebrities with info on the project and ask they take a picture of themselves in the hat and tweet it or vine it or FB it, whatever form of social media they use.

The Need: Knitters! We need knitters to knit ether the September is Childhood Cancer Awareness Month Hat or Speaking of Cancer out of nice yarn {nothing fuzzy}.

What to do with the hats: Hats could be sent to me. I have some direct connections and Gilda’s Club will help as well. It would be great if we could find others who are willing to find addresses and send hats too in the USA, Europe, Australia and other countries. We will work on literature to send with the hats. Something like a card, not to wordy.

When: Knitting could commence at anytime but we will aim to send out hats in August/September.

Spread the word!

Here is a picture from April, 2013, when we met Maggie Q, star of Nikkia and the up coming movie Divergent. Long story short: She pays our rent {found and furnished our Toronto apartment} as Bronwyn waits for a heart transplant. I will be personally knitting her hat! Bronwyn is the tall one. The other two munchkins are heart transplant recipients.

meeting Maggie-2

Contracts Go Out to 18 Designers!

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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

Happy 2014, everyone!

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…..well, that’s what I’m suppose to say, right? I saw many other pages about childhood cancer posting something to bring in the new year yesterday and kept thinking I should too but what to say?

Many pages, that are similar to ours, wrote elegant thank-yous to everyone who has helped them. I could do that. We certainly owe a LOT of thanks to many people. I get teary eyed just thinking about all the generous, wonderful things people have done for us. Every card, package and warm comment is like a hug that says, “You’re not alone.”

Other pages post pictures with encouraging captions about hope for the future. I could do that. We have a LOT of hope and belief that 2014 will bring us closer to being done here and going home. I get teary eyed just thinking about it.

………

There’s something else I get teary eyed about and I just can’t shake it. In 2014 another 1,500 children will be diagnosed with cancer in Canada. About 375 won’t make it. About 98% of the survivors will endure lifelong, life threatening side effects, drastically affecting quality of life and often taking it too soon. It was the same story last year and it will be the same next year….. unless something changes ……..and in this I have hope!

Much happened in 2013 to give me that hope! We saw awareness happening across the world like never before. I know we will see more this year! We saw advancements in research using new treatments making headlines like there hasn’t been in decades!

So, yes, I have hope! I have dreams! I believe they can come true.
B's gift-2
I took this picture of Bronwyn on Christmas morning opening her gift from her cousin, B.* At first I was disappointed I didn’t get a clearer shot instead of this sideways glance but, actually, it fits my mood. Yes, I have hopes and dreams but I am forever aware of the world of devastation childhood cancer will bring to many families this year.

I will continue to do whatever I can to change that world of devastation. I hope you will join me.

new year 2014

*The picture is a quote from Doctor Who, “I am, and always will be , the optimist, the hoper of far-flung hopes, the dreamer of improbable dreams.”

ps: I created this facebook page for Gold Craft: https://www.facebook.com/knittingforgold
Please like and share it far and wide!

Christmas and Cancer

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katie's stone-editI know…..it’s Christmas but childhood cancer doesn’t take a holiday. Today there are children who were just told they have cancer. There are those in hospitals getting chemo, radiation and bone marrow transplants. Some are learning what terminal means having been told they have run out of options or there are no treatments. A few children are breathing their last as their parents hang on to every precious moment with them. And, yes, many families are learning what the holidays are like without their child, sibling, grandchild, nephew or niece.

So to those who would say, “Can’t you take a break?” I reply, “Cancer doesn’t take a break.”

For the approximately 224* families who are discovering for the first time what Christmas is like without their child this year cancer didn’t give them a break. Add those families to the 224 who are enduring their second Christmas in mourning, 224 going through their third and on and on it goes.

Childhood cancer doesn’t go on vacation so neither do I. I will continue to do what I can to raise awareness, to attempt to highlight the importance of this issue and hopefully help make childhood cancer research a priority in 2014. I hope you will join me. If we don’t…. nothing will change and next Christmas 224 more families will visiting a grave stone.

*Statistic taken from the Public Health Agency of Canada website. It is the sum of the number of deaths listed for children under 15 and adolescents. Deaths are only counted up to 5 year post cancer diagnosis and only includes those who have died from cancer. It does not include children who have died from the side effects of treatment.

http://www.phac-aspc.gc.ca/cd-mc/cancer/fs-fi/cancer-child-enfant/index-eng.php
http://www.phac-aspc.gc.ca/cd-mc/cancer/fs-fi/cancer-adol/index-eng.php#inc

I’m in militant mode!…..

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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.

Link

CNN Reports on Gabriella Bill

Click to watch the story CNN did on the Gabriella Miller Kids First Research act, a bill just passed by Congress in the USA to help fund pediatric cancer research. It’s a beautiful story about Gabriella’s parents doing their best to carry on her fight but it includes controversy as politics usually does.

5,000 Strong Choir Sings Zach’s “Clouds”

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Has it been a year already? On December 6th, 2012 Zach released his original song and last message to us all, “Clouds” [with over 9 million views]. On May 3rd, 2013 SoulPancake told his story on his last days [over 11 1/2 million views]. On May 6th they published a crowd of celebrities doing a cover of “Clouds” just for Zach…..and on May 20th osteosarcoma took Zach away………

December 6th, 2013: Five thousand gathered at the Mall of America to remember. This is the best, happiest, thing you will see all day!

Humanity lost so much when childhood cancer took Zach but humanity is doing the best it can to honour him and never forget.

Click here to donate to the Zach Sobiech Osteosarcoma Fund.

“I want everyone to know, you don’t have to find out you’re dying to start living.” -Zach Sobiech

Dear Matt Smith, The 11th Doctor:

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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.

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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!