Category Archives: awareness

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

Posted on by
2

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

How Not To Cry

Posted on by
2

My favourite ‘cancer mom’ blogger is Nicole Scobie. She just gets it like only the parent of a kid with cancer can. Her latest entry is called How Not To Cry.

I had to read it. I have become an expert at not crying. I rarely cry in public anymore. I do my best to be ‘numb’. It is possible to be so tired of crying you can control it, even in the most difficult situations. If you ever see me not crying an wonder how I am doing it maybe you will also see that kinda clued out look on my face as I disconnect what is happening from my emotions. It’s a copying skill many parents have had to develop just to get through the days, weeks, months and years we are under intense stress because our children’s life is being threatened by disease.

How Not To Cry is also a tribute to a little girl who refused to let her cancer take her spirit for play!

Give it a read. Maybe Nicole will become your favourite too.

Olivia Wise’s Last Song

Posted on by
1

It was all over the news. A teenage girl, dying of inoperable brain cancer, recorded a cover of Katy Perry’s “Roar”. After it went viral Katy Perry, herself, responded with a video message.  We all were so touched by Olivia’s sweet voice. We loved that Katy reached out ……. and then we were all devastated when it was reported that Olivia was gone. Lovely that Katy tweeted about her sorrow at hearing the news. The simple truth about this Simple Girl is Olivia died because of the lack of childhood cancer research. Nothing could be done for her. Her doctors knew her cancer was inoperable from the beginning.

Just days before she died Olivia’s parents posted this video of the song Olivia wrote. I was stunned at the haunting beauty of Olivia’s voice and words. Please listen…..then pass it on. This is the song Katy Perry and the rest of the world need to hear. When you are done listening to Olivia’s last song ask yourself this: How many beautiful children have to die before childhood cancer research becomes a priority?

Please donate to the Liv Wise Fund in Olivia’s name to support research into childhood brain cancer.

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

Gabriella’s Three Wishes and Greatest Fear

Video

1

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…..

Posted on by
4

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.]

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

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.]