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.

Saturday, December 15, 2012

Following the leader ...

Lately, I have found myself daydreaming.  Imagining my family walking down a path. In my vision we are camping and on a hike in the woods. Perhaps we are camping because it was something that we put off doing this summer, worried about Phoebe and promising we would do it next year. In this daydream walk, we meander, and we stop often as little ones often do to pick up twigs or rocks or to examine a different bug or plant that catches our eye, and it takes us a very long time to arrive at our destination.

I mention this now because I think it is very symbolic of where we are. We are walking down a path without a clear direction of where we are going and we are waiting. We are trying to be patient, but we are waiting. Sometimes when we are on those walks with little ones, we want to rush them, telling them that there is no time to examine every single twig, to make sure each crack in the sidewalk is stepped on, that we must get to where we are going, but right now is not one of those times. Right now we will wait because what we are waiting for will hopefully bring about as much wonder and miraculous discovery as do those findings by curious little minds in nature. 

After the stent surgery, Phoebe's kidneys improved enough to begin steroids and so far, we have seen much improvement. Her belly appears smaller, she is pooping and peeing normally which is something she wasn't doing before, and she is making progress with each day. She is making regular laps around the ward, with Jon or I speed walking behind her, trying to also manage and steer her IV pole. She is eating, drinking, talking, playing, and even doing some dancing. She is, as she always is, a joy and a wonder to watch in action. She is keeping the nurses busy, asking them to take blood pressure and temperature for each of the bears in her growing collection. And she is feisty.

We are hopeful and blessed. Many reading this may think we are unlucky, and we are definitely that as well, but we are also very blessed. We have love and hope in abundance and we have many wonderful people working to help our Phoebe. Doctors here, at SickKids and at St.Jude are working together to find the best treatment options for Phoebe. The first time we went through this, we were very much alone - searching for options for Phoebe by ourselves and feeling overwhelmed. This time thanks to the many doctor friends that Miss Phoebe has made, we are not alone and instead feel very supported, both in our search and our desire to continue treatment.

Unfortunately however, there is no set path. No definitive treatment for relapsed infant Leukemia, especially one that has relapsed twice and each time in such an aggressive way. We cannot just give Phoebe more of the same drugs that she has already had, drugs that didn't succeed in curing her Leukemia and there are no new drugs, approved by the FDA, to give. In fact, only one new drug has been approved for treatment of children's cancers by the FDA in over 20 years. 

And so, we are left with clinical trials. With innovative and promising new therapies that are still very much in the experimental phase.

The biopsy of the mass and tests of Phoebe's bone marrow show that we are dealing with the exact same cancer. The cancer that one doctor once referred to while speaking to us, as "the worst". This same cancer, hid out in Phoebe's ovary and then divided and divided and divided and continued to grow until it was a mass of cells so large that it caused Phoebe to have mild renal failure due to the pressure it placed on the ureters and kidneys. It did all of this completely undetected, until it began to press on a blood vessel which caused Phoebe's leg to swell, bringing us to CHEO on Monday.

We learned later, that the ovaries are one of a few "sanctuary sites". A place where Leukemia cells will go to hide, where chemotherapy and the therapy that comes with transplant, are unable to penetrate. 

And so, we once again find ourselves in a heartbreaking spot. Living life day to day, with one half of our family at the hospital and the other at home. There have been a lot of tears from each member of this family, but our heart ache cuts deeper than the daily struggles of hospital life. For the past year, we have witnessed the work of many wonderful doctors. We have been on the cutting edge of research and have been able to give Phoebe ground breaking and innovative treatment. We have been living on the front lines of cancer treatment and we have witnessed these wonderful, determined, and courageous doctors at work, knowing very well that they are limited. That there is no money, no attention, and not enough resources to properly devote to finding a cure. 

Phoebe is here, she is strong, but we are once again grasping at straws. Looking to clinical trials, and innovative therapy, and using our child to advance the cure with the hope that this one last treatment, will be the one. The cure. We believe that this is possible, and so we will continue fighting. Always following Phoebe's lead, which right now is so very strong.

We are hoping to have some kind of a plan in place this week. Phoebe still has a ways to go before she is eligible for some of the treatment that we are looking in to. Most clinical trials have a long list of eligibility criteria, but we are slowly checking things off the list.

Thank-you all for the outpouring of love and support. It means so much to us and I know that your love and prayers will help us to move this mountain.

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