Tag Archives: pediatric cancer

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

How Not To Cry

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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

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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.

Dear Matt Smith, The 11th Doctor:

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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!

Childhood Cancer Survival: The Reality Beyond the 80%

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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…..

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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