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, October 22, 2013

Three years ...

Three years ago,almost to the day, I brought my newborn baby to her family doctor for a two month check up. It was this check up that would change our lives and send us down the path we are still traveling, and in some ways, will probably always travel. I remember the doctor feeling Phoebe's lymph nodes and when she got to the ones in her groin, squeezing a walnut sized lump and saying "this isn't normal". That was all she would say, that and that our lymph nodes are part of our lymphatic system and then she uttered one word, "bone marrow". My heart sunk and my mind searched for answers. Looking back, I had no idea the severity of what she was saying.

A week and three trips to the hospital later, Phoebe was diagnosed with cancer. Three trips. We brought Phoebe in when she spat up what I was sure was blood, but was later assured it was "just bile", another visit came after she stopped having bowel movements. Ten days without a single one. Our final ER trip before diagnosis was for a fever. It was on this visit that the ER doctor told me that he knew what my family doctor was thinking but that "cancer in someone as young as Phoebe is so rare it is practically impossible" and sent us home. In fact, we were sent home without any tests run each time, and the person I am today wants to scream at the person I was then, but instead, I left the hospital after each visit clinging to the hope given to me by those ER doctors. Desperate to believe that my baby was okay. That is was just bile, gas, colic. That Phoebe was simply working things out in her tiny self. That it was okay to not have a single test run. I convinced myself that they were the experts and that they knew what was best.

The day before we went in for the blood tests and ultrasound, ordered by my family doctor. Tests we waited 8 days for. I remember thinking that based on what the ER pediatricians were saying, Phoebe didn't need the tests. I wondered if I needed to or should put her through the poke and ultrasound. Thank God I did as she was dying. We had no idea the severity at the time, but she was critically ill and had been for weeks. The results of blood work showed a white count of 698,000. Phoebe had virtually no platelets and her hemoglobin was dangerously low. She was at risk for a stroke at any moment and we had no idea. This still blows my mind. How could I have been so blind? I ask myself this often, I also ask it when I remember the giant mass that was growing before our eyes yet amazingly undetected in Phoebe's pelvis, and I always come up with the same answer. Phoebe is a super hero. She has an uncanny ability to look "well" when she is anything and everything but. 

The rest of this story is history but each year, as we approach this unfortunate anniversary, our  "cancerversary" as it is referred to in the cancer world, I feel the need to rehash these events. I relive the guilt and the heart ache and I am soothed by the intense hope and belief that I feel; that despite our rocky start, all will be okay. I just can't help but wish things could be different. 

Then I think about Phoebe.  I think about all that she has been through, about all of the memories we have made in the face of cancer and the things we have experienced and I am calmed. She is here. I take a great big heaving sigh of relief. We have a beautiful family. We have a lot to be thankful for. All of this doesn't negate the past or make it okay. It will never be okay, but it makes me feel better. It is therapeutic. Phoebe doesn't deserve any of this, but more than that, she doesn't deserve to or need to relive the past and the mistakes that were made. And for every mistake, there have been many blessings and more days filled with luck. 

We have dodged what at times has seemed like a million bullets and every day without cancer, we dodge a few more.

I have learned more in the past three years than I would have thought possible. Besides learning how to care for a very sick child, I have learned to follow my instincts. I knew that something was very wrong with Phoebe. I tried every way that I knew to get answers. I brought her to the doctor, I asked questions and I returned home with very few answers. So I brought her again and again and I tried to follow my instincts. This lesson has helped us the most throughout these three years. Knowing the importance of speaking up led us to search for second opinions after Phoebe's first and thought to be fatal relapse over two years ago and it was this determination and persistence, with the support of Phoebe's doctors, that helped to save her life. I only wish I had learned it before those initial visits. I wish I had asked for tests rather than let myself be calmed by the words of well meaning doctors.

This story of multiple visits to the ER before a childhood cancer diagnosis is not unique to my family. It is a story that is told often by cancer moms and dads. Childhood cancer is not rare. It can happen to any child, any parent, at any hospital, in any city or town, and it is important that we are all aware of this. Had Phoebe been diagnosed on our very first visit to the ER, she would not have arrived in critical condition, she would not have needed to spend over a week in the ICU, her leukemia may not have penetrated her central nervous system, her white count may not have required an exchange transfusion to become manageable and to simply begin treatment. Listening to and hearing my fears and concerns, really hearing them, would not have changed the outcome, Phoebe was always going to have cancer, but it would have helped.

Phoebe had her biweekly chemo on Friday and began her steroid pulse. She is moody, depressed, extra feisty, and overall just seems a bit "off" but hopefully will be back to herself soon. If all goes as planned, we have just over 4 months left of this phase of treatment and potentially this amount of time left for any kind of treatment. I can't imagine giving Phoebe more chemo and I honestly don't think her little self can take anymore, so I hope and pray that this is it. 

On our recent trip to St.Jude I heard the words "uncharted territory" a few times. I heard this spoken by doctors who see many unique patients like Phoebe. Doctors who I am sure have charted a few unfamiliar waters themselves. I am learning to embrace these uncharted but thankfully relatively calm waters, but it is hard not to know what to expect. Phoebe's doctor in Toronto told us recently that one of the clinical trials we had hoped Phoebe would qualify for after her second relapse has now reopened. It closed after an unexpected and unrelated death and was expected to reopen in February of 2013. Thank goodness things worked out as they did and we weren't relying on this for treatment as we wouldn't have been able to wait this long. The business of clinical trials is hard and frustrating and the most stress I have ever felt and hope to ever feel was after Phoebe's first relapse, waiting for the one remaining spot in a shot in the dark phase one clinical trial, all the while begging the heavens above that it would save Phoebe's life. I never want to be back there again. The other clinical trial we had hoped for - the very promising one using modified t-cells, will be offered at Toronto SickKids in 2014. It is reassuring to know that steps are being made towards a cure, but these trials are just that - trials. They are only available to the children who have exhausted all conventional therapy, and they come with a long list of criteria. Getting in to a clinical trial, when you are in a race against time and cancer, is akin to winning the lottery. I hope that these promising trials make their way to mainstream treatment so that children like Phoebe who are left without options no longer have to grasp at straws and battle for remaining spots. So that they become options for all children. For this to happen we need greater awareness and more funding for pediatric cancer, among other things. But we're making progress.

October 26th is Phoebe's official "cancerversary" - on this day, take a moment to reflect on what you have to be thankful for. Hug your kids, your parents, your pets, your friends. Do some good. Spread some kindness in honour of sweet Phoebe Rose and her friends. As always, thank-you all for following Phoebe's journey. Your support, love, encouragement and prayers are truly what has gotten us through these past three years.



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