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.

Friday, November 30, 2012

Shout it from the Rooftops. Day + 365

It has been 365 days since Phoebe's life saving stem cell transplant.

We have so much to be thankful for.

I have waited for this day for so long, and while we are not out of the woods yet, and Phoebe still has to undergo bone marrow tests at St.Jude in January to ensure that she is still in remission, and it will be years before she is considered "cured", we are on our way to safe ground.  We are carefully making our way to the edge of that once very deep, dark wood, and we are not looking back. 

Shout it from the roof tops. We are day + 365.

It was late in the evening, Dec. 1st of last year, that my stem cells arrived, ready to be given to Phoebe. Mae was thankfully being looked after by a friend who traveled to Memphis to help and I had been in the donor room for the entire day, starting the process at 9am and finishing close to 5. With a needle in each arm, the help of the fabulous donor room nurses, I was able to harvest a large amount of cells. I remember one doctor telling us that Phoebe received one of the highest amounts of t-cells for her small size, that they had ever given.  So much so, she didn't receive the second bag of cells that I gave the following day. It still sits, frozen at St.Jude, just in case.

To take you back to those days, I have to explain something about my husband. For those of you who know Jon, you know that he is a man of very few words, but that his face will often speak volumes. On that second day, while I was in the donor room giving the cells that we thought would be given to Phoebe later that evening, he came in and the look on his face was one of pure fear. I asked how Phoebe was doing and he said "okay", but written all over his face was panic. Phoebe was reacting to my cells and what he didn't tell me, because he knew that I couldn't be there with her, was that her body was in shock. Her oxygen saturation levels were dropping, heart rate was climbing, her skin began to turn a brilliant red, and she was beginning to have those fevers that were too high to register on a thermometer, only brought down slightly by a cooling blanket and Tylenol. He later told me just how terrifying this was, and apart from that short visit to see me in the donor room (which the doctor forced him to take), he was with her the entire time.

Phoebe fought her way through, one feisty step at a time, and today we are here, at the edge of the woods.

I often replay words spoken by our many doctors, and lately these words have been popping into my head more frequently as I am able now to recall different parts of Phoebe's journey. There are the words that I don't like to remember, that make me cringe and want to cry. The talk of zero and comfort care that we had so many times. Telling Jon and I that we were wrong to be so "fixated" on finding treatment. That "we don't give chemo, just to give chemo". But then there are words of hope. Words spoken by a doctor a few days after Phoebe's diagnosis, after the most frightening and fearful nights in the ICU at CHEO, nights that were spent praying for just one more hour with our baby.  Words spoken in the very beginning that said "we are here to cure her". Those words and their hope carried us so far. They carried us to Toronto and transplant, to hear the words of another hopeful doctor who spoke of Phoebe growing up and going to school. Imagining those milestones took us even further, but when Phoebe relapsed and we were told that all hope was lost and that she probably wouldn't survive, it was the words of another mother that I repeated over and over to myself.  This woman fought infant Leukemia with her child many, many years ago. Her daughter is now a grown woman.  Her words are what I would cling to when all hope seemed lost.  She told me to "always believe that Phoebe will be okay". Even when it seems impossible and very dark. "Believe and stay strong for her".

And so that is what we did.

We made it to St. Jude to where more hopeful doctors spoke words that still echo in my head. Things like; "when we cure Phoebe of her Leukemia". And "she is my little miracle".  Words filled with so much hope for Phoebe's future that they helped.  They may just be words, but they made a difference and they helped us to believe, even on the most terrifying days, that things would be okay.

Not a day goes by that I don't stop and take a moment to say thank-you.  It is usually late at night when I am checking in on Phoebe and Mae. I like to watch them sleeping peacefully and silently say thank-you for the small things, like sleeping in our own beds, and for the bigger things. For every single little breath and for getting to know a life without cancer. The blessing of being able to watch my children grow up.

I know that things could have taken a very different turn, and our lives could have looked very different. We took a chance by continuing treatment after Phoebe relapsed and we went against the advice of many doctors because we didn't want to look back and wonder what if. We didn't want to regret not trying that one more thing, because we believed not only could that one more thing save her, but we believed that by trying and treating Phoebe further, we were hopefully helping other little ones that might follow this unfortunate path.

As we learned, there is no set path for infant Leukemia that relapses so soon post transplant and among many oncologists, it is considered incurable. I am hopeful for change. Hopeful that these brutal, and astonishingly low survival rates will improve.

And so, we have seen six months of inpatient, intense and mostly high dose chemotherapy, countless rounds of chemotherapy injected into Phoebe's spine to target the central nervous system, a bone marrow transplant that came with enough chemotherapy to kill an adult and completely wipe out Phoebe's own marrow, and yet the Leukemia survived and thrived. We turned to a phase one clinical trial; a monoclonal antibody of which Phoebe was the first Canadian child to receive, another month of chemotherapy and high dose steroids, but still no remission. A flight to Memphis and St.Jude, five days and three different types of chemotherapy, an infusion of Natural Killer cells. Finally remission and restored Hope and a second stem cell transplant, this time using my mismatched cells and less intensive chemotherapy.

And now, thankfully, one year without cancer.

We hope that this is the end of all things cancer for Phoebe. I think that it should be enough, but there are children out there who we love who are still fighting after enduring all of this, and more. There are children who we have come to love, who will never grow up. The fear that we have lived with for most of Phoebe's life is still very real. Each day it is numbed a bit more, but it is still there.

One day we will look back at this life that we once came to know, this life with cancer, and it will be far behind us.

Shout it from the rooftops.   

Happy first transplant "birthday" Miss Phoebe Rose.

Hope is a beautiful thing, and we have been lucky to have had it shared with us from many corners of the world throughout this journey. We have been made stronger by the outpouring of love, support, prayers and beautiful positive energy and thoughts that we have felt at every step. Thank-you. There really are no words that match just how much this support has meant to us.

This holiday season, please consider giving a gift of hope. Consider donating to St.Jude and supporting the lifesaving research and work of this wonderful hospital. There are many ways that you can do this. One is to purchase a gift for someone on your list from the St.Jude gift shop as proceeds go directly to the hospital. You can shop by clicking here. Another is to support the fundraising efforts of the Littau family. Wesson's family, who are raising funds for St. Jude and running in the St.Jude Country Music Marathon in his honour. http://heroes.stjude.org/teamwessonwilliam

Thank-you also to everyone who has voted. My goal is to share Phoebe's story as a way to increase awareness and your votes have helped me to do this. Once again, if you have enjoyed reading, please share and/or click the "vote for me" link at the top of this page to vote. Thank-you! 

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