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.

Thursday, July 3, 2014

Phoebe can ...

It has been a while since I have written. There are only so many ways we can say that we are waiting. That we are worried. There are only so many times we can say that we hate cancer and that this situation is beyond devastating.

But, here we are ... still waiting, worried, frustrated and overwhelmed. We are also terrified.

If you ask Phoebe, however, she will tell you she is fine. She will tell you that she can swim underwater, that she can ride a bike and that she can jump higher than her big sister. She will tell you that she loves her new "water park" - a gift that magically appeared on our front lawn with many other treasures; dropped off by a kind and generous friend and stranger (Thank-you!). She may even show you the elaborate "Frozen" cake she has picked out for her birthday. She will tell you that she is starting school soon. When she starts to talk about starting school, it takes everything in me to fight back tears. This is all just so unfair

We heard last week that with the best case scenario, the treatment we need should be at SickKids in 6 weeks. This is already 4 weeks behind schedule. We also heard today that the leukemic blasts in Phoebe's bone marrow have increased to 80%. This is just unbelievable and not at all what we were expecting. Phoebe runs around all day and has no visible symptoms. It is heartbreaking to know that the beautiful energetic little girl that we watch play each day is slowly being taken over by this cancer while we wait for treatment.

We are adding steroids and altering the plan to exactly what has worked for Phoebe in the past, at least in the short term, and then we will check the bone marrow again in 2 weeks. If there has been no improvement, and still no hope of accessing the study drug, we may go to St.Jude for plan b. The worry, among many, many things, is that the plan at St.Jude will be harder on Phoebe and could make her ineligible for the study drug. This new drug is thought to be promising and Phoebe's best option, even though it is "experimental". After all, every cure began with an experiment. I wish Canada would realize this and help children access these new treatments. 

We feel so helpless. We are up against infant Leukemia and the Canadian government. If Canada supported childhood cancer research and recognized the importance of these clinical trials as a way to advance survival rates and find cures, we would have started treatment by now. We would have started treatment when Phoebe had less disease and therefore fewer obstacles. We are in the process of appealing OHIP's decision and I think all of the letter writing and media attention may be helping with this. We are hopeful. Thank-you to everyone who has written to their elected officials on our behalf and for those of you who plan to do so, it is not too late.

We still need a lot of things to happen. We need OHIP to reverse their decision. Or to agree to fund this treatment while we wait for it to open at SickKids. We need Health Canada to work for us and push this drug forward so that it can open at SickKids sooner than 6 weeks. We need the treatment that Phoebe is receiving to, at the very least, keep things at bay. If something happens and Phoebe is not able to access this treatment, I don't know what we will do. 

I try really hard not to dwell on all that is wrong with this. We have been on this road for too long and know too many families who wake up each day with a piece of them missing to dwell on all that we don't have. Right now we have the most important thing and that is all of us under one roof. Phoebe wakes up each day smiling and ready to take on the world, and so we do too. We may be in complete denial, but in this place of denial, we are able to cope.

We are still hopeful. Our hope for Phoebe's future and a cure for this disease has been reduced to a tiny little voice that encourages us each day to keep fighting. It is the most beautiful tiny little voice and it is also incredibly strong and wise. It belongs to Phoebe. She is not giving up and so neither are we. 

Phoebe's oncologist from CHEO and I were on CBC radio yesterday morning. Here is a link to the interview. Please listen and share. Please. 

Help us shout it from the rooftops. We need to do better than this.

Thank-you all for your support and for continuing on this road with us.

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