On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Tuesday, August 26, 2014

What you can do ...

On Friday, Phoebe's blood work showed that her counts continued to drop and she was very close to needing a transfusion. The doctors decided to wait, given that Phoebe is a picture of health and has no symptoms. They were especially impressed when she listed off what she had for dinner the night before. "I had capers, artichoke, crab, avocado, kale, hearts of ... what was that a heart of Daddy?" She is eating well, living well, and really does look good. We were given the weekend off and so far all is well and we have been able to avoid an emergency visit to the hospital. With counts as low as Phoebe's, we expect to see bruising, fatigue, and irritability, but we still see joyful Phoebe. For the most part anyway, she does have her moments. We are hoping tomorrow's blood work shows some signs of improvement and that we can avoid a blood transfusion. 

In other news, September has arrived and it is childhood cancer awareness month. There are many things that you can do to make a difference and I challenge you to do something to help, honour, and support children fighting cancer. It is easy to look away and pretend that this disease doesn't exist, but it does, and we need your help. 

In honour of Phoebe and her many friends whose lives will never be the same, please ...
Donate blood or platelets. 

Regsiter to be a bone marrow donor - OneMatch is holding a swab event at the Childhood Cancer Awareness event on Parliament Hill on Sept.7th, so you can do just this. Canadian Blood Services will also be there so that you can also sign up to give blood. 

Donate to a pediatric cancer specific charity - for ideas, see the list at the right of this page. 

Wear a gold ribbon and tell people what this represents. 

Change your porch light to gold and invite your neighbours to do the same. Take a picture of your beautiful gold light and share on Facebook and twitter with the hashtag #GoGold 

Volunteer in the oncology ward at your local children's hospital. 

Help a local family dealing with a childhood cancer diagnosis by offering to make meals, cut grass, shop for groceries, or assist with childcare. 

Write to your local MP or MPP and ask them to be a voice for the over 10,000 children currently fighting cancer in Canada. These children, the many before them, and the many that will come after them, need a voice. 

If you are in the Ottawa area, please attend the childhood cancer awareness event on Parliament Hill. We are grateful for the support from Ottawa's Mayor, as well as MPP of Ottawa Centre, Yasir Naqvi, MPP of Ottawa South, John Fraser, MPP of Ottawa Vanier, Madeleine Meilleur, and Ontario's Minister of Health, Minister Eric Hoskins. The event begins at 6pm, and for more information, please see www.facebook.com/gogoldcanada 

I challenge you to do just one of the things on this list during the month of September and when you do, please think of families like mine, and know that when September ends and the pink ribbons take over, we still have children that are sick, fighting to survive, or dying from cancer, and are incredibly grateful for the support. 

The Parliament Hill event is organized by local oncology families, our friends, and extended families - mine included. 

Since Phoebe was diagnosed with cancer, I have written what seems like a hundred letters - to Members of Parliament, Ministers of Health, and the Prime Minister. Apart from the positive response from Ontario's health Minister that led to us receiving treatment in Denver, I have received few, if any, heartfelt and sincere replies. I often wonder what it would take for those who have the power to make change, to do something and I am often frustrated by the lack of attention that children fighting cancer receive from the Canadian federal government. Earlier this year, the organizers of the Parliament Hill event sent out hundreds of invitations. Hundreds. Each and every federal Member of Parliament received an inviation. The leaders of each federal political party and the Prime Minister received an invitation and a letter, explaining why this event is important. Slowly the regrets have come in. I have read each and every one. Some are heart felt, but most are standard replies often with at least one careless error, written by a quick hand without acknowledgement of the actual issue. So and so can't attend. The MP is busy. I understand that people are busy and that MPs have demanding jobs, and I don't expect everyone to attend, but what really frustrates me is the lack of understanding. These are CHILDREN. We are asking that attention, support, and recognition be paid to children, who by absolutely no fault of their own, have been dealt an incredibly unlucky and crappy hand. Children who are dying. Children who are suffering and spending many years of their childhoods fighting cancer with out-dated and toxic drugs that all too often do more harm than good. How this is considered okay and not given the attention it so desperately deserves is something I will never understand. 

Cancer is the leading cause of disease related death for Canadian children. It receives, on average, 3% of funding from the federal government. There are 12 different types of pediatric cancer and many of these, including Phoebe's, have very low survival rates. There have been only 2 drugs approved for use in the treatment of children's cancers in over 30 years. This leaves children to fight cancer with outdated and antiquated drugs that are meant for adults, not the developing bodies and minds of children. It leaves children to suffer long term side effects that affect, shorten, and threaten their lives. 80% of children may be "cured", but this cure comes at a devastatingly high price. It can come at the cost of their lungs, their heart, their intellect, their fertility. Children who are cured of their cancer are at high risk of developing a secondary cancer. For many, the struggle to a cure never really ends, it just changes. The "cure" begins to mean something else. Another year. Another battle.

As I sit here and watch Phoebe play, weighed down constantly by a back pack of medicine that weighs a third of her own body weight - something that she carries day in and day out without asking for help or complaining once, I realize that this backpack represents hope. It represents research, determined doctors and scientists, promise, and a chance at a cure for a disease that we have watched Phoebe fight for most of her life. It is progress. We are grateful for this chance, but we fought very hard to receive it and I can't help but think that it should be easier than this. That the same hope that is found in new research and clinical trials should be accessible to all Canadian kids. We have been unable to access innovative treatment for Phoebe's cancer in Canada since 2011. If we had followed the Canadian plan, Phoebe would not be here. The Canadian plan had us giving up before we even got started. 

It doesn't have to be this way. I expect more. At the very least, I expect the Prime Minister, and the leaders of each Federal party to encourage their MPs to attend the Childhood Cancer Awareness event on their behalf. I expect a federal Member of Parliament to join us and offer to stand with the thousands of Canadian children fighting cancer. I expect someone to offer to be their voice in the House of Commons. It is really easy to look away, but it takes courage to stand with us. 

In the month of September, I challenge you not to look away.

Please stand with us. Please share. 

Go Phoebe Go. 

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