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, June 3, 2014

Small Victories

Little by little, we are making our way through. 

Phoebe's MRI is clear. Good news. Phoebe's belly and pelvis were where she relapsed the second time, but this time, this area remains cancer free. A small victory. 

Phoebe's blood work remains good and normal. No evidence of the storm that is thought to be raging in her bone marrow. I am holding on to hope that it will not rage, but rather remain controlled, but life with this leukemia tells me that it is probably only a matter of time before we start to see signs. It is not kind or gentle. We will take this good news though and run with it as far as it will take us. And then we will run some more. 

We are looking into a clinical trial that right now is only available in NY - it is for a promising new drug that actually targets MLL+ leukemia, which is what Phoebe has. It is the first of its kind and if we are able to get it, Phoebe may be the first child to receive it. It is the first drug developed, but not yet approved, that aims to target the MLL gene - amazing and depressing all at the same time. 

What makes this complicated is that the treatment in New York would cost us every single thing we currently own and then some. It is not likely to be covered by our provincial health insurance because it is experimental and part of a research study. Never mind that it has shown success, has no side effects, specifically targets a rare leukemia that currently has a very low survival rate, could very well help Phoebe, and is one of our only options. It is expensive and innovative, so most likely not covered. Our doctors are expecting a refusal letter from OHIP. The lack of support for pediatric cancer research and children fighting cancer is simply not enough. It is infuriating and we need to do better.

Our next step is to wait for this letter of refusal and then to wait for this treatment to come to Canada. Phoebe's doctor at SickKids is hopeful and confident that it will make it there sooner rather than later, and we hope to have more answers and a plan that will start Phoebe, once again, on a path towards complete healing, soon.

In the meantime, we are enjoying every moment that Phoebe is well and supporting her in every way we can. She spends her days running and playing and I often watch her in amazement, wondering how can this be possible? I am honestly still in shock that this is actually happening. 

"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." Shel Silverstein 

Anything is possible - even the very good things.

Go Phoebe go. 

1 comment:

  1. It makes me so angry to think of your sweet Phoebe in limbo waiting for this treatment to come to Canada. Time is so precious for these kids. Ugh...

    I'm keeping Phoebe at the top of my prayer list, that the Health Care system would get it together FAST and that you would continue to celebrate small victories.

    Hugs to you both!