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, July 8, 2014

Phoebe will ...

There IS strength in numbers. Look what we did ... 

Ontario's Minister of Health called ... he said that Ministry of Health will partner with SickKids to fund Phoebe's treatment in the US until it is open in Toronto. He said that Phoebe's story touched his heart, that he agrees that if all of Phoebe's doctors recommend this treatment then we should be listening to them, that children fighting cancer should have access to clinical trials when these clinical trials are their only option, and that the last thing we should worry about is not being able to access the one option we have to save our child.


This has not been easy and we should not have to fight so hard for access to clinical trials and potentially life saving treatment. We are grateful, but this situation has opened our eyes to the need for change.

Now that we have waited 6 weeks for this answer, we are racing. We are racing against an aggressive cancer, against time, and reality is setting in. This news is a relief, we are very thankful, and when we heard it we celebrated, but things are still very precarious. 

Today Phoebe's blood work shows elevated kidney function - her one good functioning kidney is working hard. This could be a result of the leukemia cells breaking down - and it needs to be monitored closely. Her platelets have dropped and her once healthy and active bone marrow is overwhelmed with disease. 

When we applied for funding on June 2nd - Phoebe had perfect blood work and a bone marrow that was "only" slightly filled with disease. As far as leukemia patients go, she was healthy and the timing was perfect for her to start treatment. Today, despite the fact that, in her doctors words, "she looks like a million bucks" (and she really does), she is actively fighting this monster and up against the many challenges it brings, and we are running out of time

What is the plan? If all looks okay with Phoebe's blood work tomorrow and for the rest of the week and if she is stable enough to travel, we will be boarding a flight to Denver or New York to start the clinical trial early next week. In the meantime, Phoebe will need a double lumen central line - getting this will be hard. Phoebe loves to swim and with this line she can't do this. I think she will be devastated and my heart breaks just thinking about her reaction. She will also need frequent blood work and we need to do a lot of things to get ready to leave. We don't know how long we will be gone which is incredibly hard to prepare for. And we worry about sweet Mae and how she will handle all of this - right now she has her bags packed for camping. 

We are anxious to start this treatment and grateful that our long wait is over. 

A special thank-you to Madeleine Meilleur MPP of Ottawa/Vanier and her office for their leadership in pursuing this and working to make sure that Phoebe's story was told and heard. 

Thank-you to every person who wrote, shared, tweeted - thank-you for adding your voices to this fight and for helping us speak up for Phoebe. Together we proved that we can make a difference. Together we made a difference. 

Thank-you to Phoebe's doctors. Phoebe has amazing doctors. They are not giving up and are fighting as we are, to save Phoebe. We can not thank them enough. They are not only Phoebe's doctors, they are her advocates and they have done so much for Phoebe and for our family. They are patient and kind and just brilliant people. We are beyond lucky to have the team of people that we do looking after Phoebe. They have given us time, hope, and another chance - over and over again. And they have done it with compassion and kindness. 

This is one step of many for Phoebe. There is a long road ahead and so many uncertainties. We are blessed to have this chance. We are blessed to have Phoebe and Mae. We are blessed to have each other and an army of support. 

We hope and pray for a million more steps forward. 

Go Phoebe go. 

Phoebe WILL 

"Love recognizes no barriers, it jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope" Maya Angelou 

No comments:

Post a Comment