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.

Monday, February 4, 2013

Go Phoebe go ...

Today was a good day. Phoebe had her bone marrow aspirate and MRI and we heard not too long after that the radiologist was "unable to definitively identify any residual focal mass in the pelvis". To the naked eye, the mass is gone. It is no longer the size of a walnut.

Good riddance.

The bone marrow results should be back in a couple of days and we will know then more about the plan and if Phoebe qualifies for the NK trial, but for now, we will enjoy this piece of good news.

We have another visit to see the radiation oncologist tomorrow. Phoebe will actually have a radiation simulation, to prepare her if she needs radiation, which it is looking like she will. The simulation is a CT scan, again under sedation, and it will help the doctors to customize a plan for Phoebe. We are anxious to talk to the radiation oncologist about Phoebe's MRI and this plan. We are aware that this treatment may come with significant long term side effects, the details of which we are not sure of, and the decision to use radiation is one that is not taken lightly by anyone.

Cancer as I have said again and again, is a monster.

So far this cancer has done all it can to wreak havoc in Phoebe's body and the worry is that if we do nothing to target cells that may be hiding, invisible to the naked eye, in the belly, it will just come back again. And each time it comes back, it will be more difficult to treat and cure. Radiation is a way to target these cells and possibly, hopefully, get rid of them for good.

Our wonderful doctor in Toronto told me once, when discussing radiation when Phoebe was so very young and everyone was hesitant, he said, "Jenny, you need to have a surviving child to experience long term side effects". I will never forget those words and today they carry a whole new meaning. Perhaps radiation is what Phoebe needs to cure her once and for all, and when I have a surviving child I will be so grateful and thankful that we did what we could. That we did all that we could to save Phoebe. I would love to be able to have the opportunity to fight with a teenage Phoebe about why she will not be able to naturally have children. To explain to her why we made the decisions we did. I want desperately to watch her grow up. What I will not be okay with, probably ever, is the length at which these children need to go to be cured.

There needs to be an easier way.

Today is world cancer day. Please remember that children get cancer too. That childhood cancer is not rare, but rather the number one disease killer of our children in Canada and the United States. That worldwide, every three seconds, a set of parents will hear those life changing and devastating words. Your child has cancer. Awareness is the first step towards a cure.

Go Mighty Phoebe go ...


1 comment:

  1. Praying hard for Phoebe and her family!
    Carol Gary Packard