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.

Friday, June 20, 2014

18 days later ...

After waiting 18 days, we finally heard from OHIP today.

They have denied our application for funding of Phoebe's treatment at Sloan Kettering. The letter outlines that the Ministry of Health does not cover anything "experimental" or done for the purpose of research. This speaks volumes to the lack of support and attention given to children fighting cancer in Canada. Children with relapsed cancer depend on research and clinical trials. It was a series of phase 1 clinical trials that gave us a year without cancer after Phoebe's first relapse. In fact, one of these treatments was brought back to Canada after the success it showed with Phoebe. It is because of advances in research that Phoebe is still here. The only way we are going to find a cure for this disease, a leukemia with little hope of a cure, that has seen no advances in treatment or survival rates in over 10 years, is through research. How are we meant to move forward if we do not invest in research? Why are we not supporting the doctors and researchers who are working hard to find cures? Phoebe's doctors are spending their invaluable time advocating for new treatments and we are all spinning tires because most of these treatments are not available in Canada or accessible to Canadians. This is not okay. 

It is not okay that we can't access the one targeted "experimental" treatment being developed for Phoebe's cancer. It is not okay that Phoebe has been without options in Canada since 2011. She and all of the children fighting cancer deserve better than this. We deserve more than 3% from the federal government, but see, this is what 3% gives us. It gives us outdated toxic chemotherapies, very little progress, and a serious lack of options and innovation.

What makes all of this crazy and even more frustrating is that this treatment is supposed to, hopefully, open at SickKids in 1-2 months. Once there, it is STILL experimental and STILL research, there will still be no published data showing success, but OHIP will cover it because it is at SickKids. They will only cover it, however, for kids who live in Ontario. This is our "universal" health care system at work. SickKids has treatments that children in other provinces cannot access. Were you aware of this? 

Each day that we wait for this treatment is one more day that Phoebe has an untreated, relapsed, and aggressive cancer. It is one more day that this cancer that we have fought for almost 4 years, can get worse, spread, and threaten her life. Each dose of chemotherapy we give to Phoebe to stop the progression of this disease, something we need to do to prevent it from getting out of control, affects her in ways that may cause her to be ineligible for further treatment. And yes, Phoebe eats a healthy and organic diet made up of whole foods that we hope will help to heal her and keep her strong. We are doing everything we can.

Where do we go from here? What is the plan? To be honest, I don't really know. Our doctor at SickKids is working hard to get this treatment to SickKids and expects it to open in about 6 weeks. The only option we have right now is to wait for it to open at SickKids and while we are waiting, continue to give Phoebe low dose chemo and hope that this disease remains under control. If the chemo proves to be ineffective or we are unable to get this treatment, we have another option at St.Jude, but this targeted therapy is preferred because it will have the fewest side effects. There are no guarantees and it is experimental, but it is promising.

We are tired and angry and we hurt for Phoebe. She doesn't deserve any of this. She has done enough - she has given 3 and a half years of her life to fighting this cancer, and she has also given this time to finding a cure for this disease. She has participated in clinical trials and she has forwarded research. Her little 26 pound self has done more to forward research and find cures than those who are appointed and elected to protect and support her.

We need our government to start caring about children with cancer. These kids are giving their childhoods, and in many cases, their lives, and in turn, they are given 3 % of federal government funding, outdated treatments, antiquated drugs, and little chance at surviving without life threatening side effects.

We are pushing forward and we are not giving up. We are determined to do what we can to cure Phoebe of this disease and to give her another chance. We are doing this for all of the sweet babies that we have met on this journey and the many others that we did not have the opportunity to meet. We need to find a cure, so that the next family does not suffer this heartache. We also need to fix this system, so that the next family does not have to fight like we have for a chance at a life with our family complete.

If you would like to help - you can write to your MP, or your MPP, and you can ask them to be a voice for kids like Phoebe. You can share this story, or share a story of a child in your community who is fighting cancer. Share Anya's story as she is also fighting with OHIP for access to promising treatment.  Yes, there are good stories too, but there are far too many like ours.

You can also ask them to join us on Parliament Hill on September 7th, for the 2nd annual Childhood Cancer Awareness Event, to show support for the thousands of Canadian children fighting Cancer. You can join us too.

There is strength in numbers. 

1 comment:

  1. How can we here in the US support you! I'll do anything to stand behind you, your sweet Phoebe & all of the other little ones waiting for a cure. Prayers & love from the Henrys in California.