Gold on the Hill

I was asked to share Phoebe's story at the 4th annual Gold on the Hill event for Childhood Cancer Awareness. Here is what I said ... 

I have thought a lot about what to tell you today. In October 2010, my daughter, Phoebe, was diagnosed with infant leukemia. I wondered - should I tell you all of the shocking statistics surrounding childhood cancer? That it is the leading cause of disease related death of our kids, yet receives only 3% of federal funding? Should I explain that there are children in Canada who are sent home on hospice because they are unable to access clinical trials out of province? Should I describe how financially, emotionally and physically devastating a childhood cancer diagnosis is on a family? I thought that instead, I would tell you about Phoebe - her story and her life, because they speak volumes to how we need to do better for children with cancer in Canada. 

Phoebe was 9 weeks old when she was diagnosed and we were told that she had a 15% chance of surviving her disease and harsh treatment. Imagine knowing that your baby's chances of dying far, far outweigh those that she will survive. It was, and will always be, completely devastating. 

 

But, we believed that Phoebe would be okay and we promised to do everything possible to save her. Phoebe's treatment was 6 months of mostly high dose chemotherapy - spent entirely in the in patient unit at CHEO, and a bone marrow transplant at SickKids. We spent a total of 9 months in-patient at the hospital and by the time we were finished with transplant, Phoebe was completely tube fed, she had lost the ability to sit up by herself or bear weight on her legs. She completely lost her voice – but through it all she smiled, and we believed that this was her cure. That it would all be worth it in the end.  

 

10 days after we returned home from SickKids, we learned that Phoebe had relapsed. The cancer was back and she was given weeks to months to live. We were told at this time that there was nothing else we could do and we were advised to bring Phoebe home and keep her comfortable.

 

This was in 2011 and Phoebe was about to celebrate her first birthday. For the first time, I think we realized just what we were up against. High risk infant leukemia has very few, if any, long term post transplant relapse survivors. There was simply no data, no research, nothing to suggest that she could be cured, but we were desperate to try. We still believed that she would be okay. 

 

We found one clinical trial in Toronto and traveled back to SickKids. We were so weary and the idea of putting Phoebe through more treatment after what the chemotherapy had done to her tiny body was daunting, but our doctor described this new trial as exciting – he said the drug was targeted, gentle, and promising and that was all we needed to move forward. Phoebe would be the first Canadian child to receive this investigational drug - a first in its class immunotherapy, and unlike chemotherapy, she experienced no side effects. It rid her body of 60% of disease - not enough enough as 30% remained, but to us it was a success. It gave us hope and it opened our eyes to how important and game changing targeted and immunotherapy therapy is.

 

This drug and this point in Phoebe’s journey is also pivotal because it marks the very last time we were able to access or receive any innovative treatment in Canada. This was in 2011.

 

We moved on from SickKids and traveled to St.Jude Children’s Research Hospital in Memphis - a unique hospital in the US where treatment is provided without question to families who don't have insurance coverage. Phoebe received another clinical trial, not offered in Canada, using Natural Killer cells and an innovative transplant with cells harvested from me. Both were successful and she remained in complete remission for over a year.

When Phoebe relapsed a second time, we were at home in Ottawa. We had started to put our lives back together and Phoebe had learned to walk, run, jump, ride a tricycle, sing and talk non stop. CAR-T cell therapy was being developed in the US and we applied to OHIP for funding and were promptly denied. At the time this treatment was being heralded as the breakthrough cure for leukemia, but we weren’t able to access it. Instead, we returned to St.Jude where Phoebe received another clinical trial and she remained in remission for 18 months.

 

Phoebe learned to ride a bike with training wheels, we enrolled her in kindergarten, and for the first time in 4 years, I retuned to work as a teacher.

 

When Phoebe relapsed for a third time, our heart ache and devastation turned to pure fear. We had tried so many things. We were terrified we would lose her, but when we looked at her she was a picture of health. She had no symptoms of disease, her blood work was perfect. For once we had caught it early. Hope prevailed when we realized that for the first time there was a treatment being developed that was targeted to Phoebe’s very specific type of leukemia. This was a first of its kind therapy for a disease that has seen no advances in treatment or surivial rates in over 15 years. It was only available in the US, but SickKids was trying to open it. We applied for funding from OHIP – explaining that this was Phoebe’s only option, that it was targeted to her disease, that Phoebe simply couldn’t wait for it to open in Canada, that research into this disease is crucial – and we were denied.

 

I remember feeling completely helpless, deflated, desperate. How could this be happening? We were told that OHIP, and this is true for every provincial health insurance policy, will not cover any treatment that is considered experimental despite how promising this treatment may be. This also means that Canadian kids cannot access treatment on early phase clinical trials within Canada if the trial is outside of their home province. We asked every single person we know to write a letter to their MPP, and Ontario’s Minister of Health. Many people who are here today wrote letters. It took almost 3 months, countless letters, interviews on CBC with Phoebe’s doctor from CHEO, more media coverage, and some behind the scenes work and finally we heard that the treatment would be approved and we were covered to travel to Denver.

 

For us, however, that 3 months wait changed everything. It impacted our lives and created waves of complications that we would never overcome. Phoebe was no longer a picture of health with perfect blood work. She relied on blood and platelets to survive and she developed pneumonia due to a weak immune system overrun with leukemia. She began the clinical trial fragile and weak and it didn’t work.

 

When we left Denver and headed back to Memphis and St.Jude to begin another clinical trial, the pneumonia that Phoebe had developed followed us and she suffered more lung infections. The clinical trial was successful and Phoebe was in remission, but we had no choice but to stop treatment and the leuekemia returned.

 

We tried many other clinical trials and chemotherapy at St. Jude to keep the leukemia at bay. We were desperate for more time, but we were never able to make it home again. Phoebe died in the ICU at St.Jude on November 18th 2015. The ripple effects caused by a broken health care system followed us and we were always months behind. We missed a spot in the only curative transplant therapy by two months. It is an incredibly heavy and hard burden to bear and we will never truly know how things could have been, but I do know that if Canada had a system in place to allow children like Phoebe timely access to out of country and out of province treatment on clinical trials – it would have made a difference. No child should be left to wait for treatment as their disease rages out of control. No child should be denied access to treatment when this treatment may extend their life or possibly cure, and geography should never play a role in cancer therapy. It is simply unethical. Parents should not have to enlist the help of every single person they know to gain access to therapy. It should not be a fight, because we all know that when your child or loved one has cancer – there is too much fight already.

 

Phoebe was a joy to be around, smart as anything and so wise, she found light where many only saw darkness – but having cancer as a child, she made clear to us – this was not okay.  I can still hear her little feisty voice telling us “this is not okay” and I can hear her asking us to “make it okay”.

 

Ours is an incredibly sad story and I thank you for listening. But it is also a story of hope. It is a story of a little girl who believed that anything is possible and her family that believed right a long with her. It is a story of research, progress, and innovation – a story of what can happen when we all work together. Phoebe was given a terminal diagnosis in Canada in 2011 because there simply was nothing available here to help her. She lived four and a half years past this diagnosis thanks to research, clinical trials in the US, and a lot of advocacy. This meant that Phoebe was able to celebrate 5 birthdays, not just 1. she learned to read, swim, ride a bike, she went camping and to her favorite beach. Her big sister will remember her. We had 5 years and although this will never be enough, it is something.

 

The Canadian government directs just 3% of funding to childhood cancer research and Phoebe’s story – this is what 3 % looks like.,

 

When Phoebe was here, we used to say that we would “shout it from the rooftops” – we shouted from the rooftops that she was cured when we were so very happy to have good news. And then, as it became clear to us that there was no cure, we shouted from the rooftops the sheer injustice of it all. Then Phoebe died and our shouts became whispers, pleading with the world to just make it okay. And now that Phoebe is not here, we try as best as we can to continue to shout it from the rooftops that we must do better for our kids, but we need your help. As we learned from Phoebe’s journey and our massive letter writing campaign – we are so much stronger together.

 

Please remember what you have heard here today. Remember our kids and their stories. Take them with you and tell your friends, your family, your elected officials, your neighbours. Shout it from the rooftops that we need to do all we can to as Phoebe would say "make it okay". 

Thank-you.