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.

Monday, February 14, 2011

Our journey so far ...

Phoebe's journey began on Oct. 21st 2010, when during a routine 2 month check up, our doctor noticed that the lymph nodes in her groin were swollen.  We were sent to CHEO for blood tests and an ultrasound and within minutes of returning home from the tests the phone rang.  Phoebe's blood work showed some irregularities, could we bring her back in for more tests?  We arrived back at CHEO with Phoebe and were ushered in to the emergency room.  We had no idea what to expect and nothing could have prepared us for what we were about to hear.  Phoebe has Leukemia.  The doctor explained that Phoebe's ultrasound showed an enlarged liver and spleen and that her blood tests showed a white blood cell count of 675,000.  An average person has somewhere between 4000 and 15,000 white blood cells. We were shocked, devastated and speechless.  I remember thinking that there must be some mistake and I convinced myself that the doctor was going to come back in and tell us just that.  Unfortunately, that never happened.  

Our lives changed in an instant. 
Shortly after hearing the diagnosis, a flurry of activity commenced and the heartache and feelings of extreme helplessness would begin.  I remember a nurse entering the room with what looked like about 20 small plastic tubes. She told us that she needed to take some of Phoebe's blood.  Another nurse came in and asked if she needed help and the first nurse looked relieved.  I would soon understand why.   Phoebe's blood was so distorted that when they tried to fill the vials it clotted instantly.  Instantly.  So there is our tiny Phoebe screaming while nurses desperately try to pull blood from her veins.  I remember the nurse saying over and over "i'm so sorry".
We spent most of that night in the emergency area of CHEO, Phoebe underwent countless tests and we were introduced to one of the oncologists on staff.  She told us that there is no known cause for Leukemia, and that infant Leukemia is extremely rare and very aggressive.  Because it is so aggressive it requires equally aggressive treatment - you will be in hospital for a year she said.  A year?  I remember repeating it over and over again throughout the night.  I even asked her if she was sure.  I remember Jon telling her that Phoebe was okay, look at her, he said, she seems perfectly healthy and she is doing everything she is supposed to be doing at this age.  I thought about little Mae at home in her bed.  The sister that she was just starting to accept and love would live apart from her for a year.  Our little family would be split up. 
Later that night, exhausted and weary, we were led to the ICU where we would spend the next 6 days.  Phoebe's treatment started almost immediately as it was critical that her white count be brought down to a manageable level.  She was started on a course of steroids, and pumped full of fluid to help flush everything out. The fluid would also help to protect her organs as the leukemia cells were breaking down.  Her weight climbed from 5.7 to 7.4 kilos.  The six days we spent in the ICU were a whirlwind of emotion and activity.  Phoebe's blood was tested every four hours, and we held her hand while IV nurses struggled to put IV lines in her tiny veins, in her hands, feet, and head, often times unsuccessfully.  We soothed her after each poke and prod and quietly told her that it would be okay, that tomorrow was a new day.  We watched as she underwent an exchange transfusion to help her dangerously high white count come down.  Her blood was pumped out and new blood pumped in. We struggled through medical and human error. Questioning if we were in the right place. We saw stress, anxiety, worry and even tears on the faces of doctors and nurses and we listened as they told us the seriousness of Phoebe's situation and her small chances for survival. There were times in the ICU when worry and sadness took over and we sat and prayed for just one more day with Phoebe.  Throughout the difficult days, the days when life seemed impossible, I found myself repeating something that one of our oncologists told us very early on.  She said, we are here to cure her. 
After six days in the ICU, Phoebe would prove to be stable enough to move, so onwards and upwards to the 4th floor and the oncology unit we went.  And now, one hundred and ten days later, Phoebe has proven herself to be the bravest, strongest and most courageous person I will probably ever know.  Phoebe has fought her way to complete genetic remission.
We still have a very long way to go.  We are about to enter our fourth phase of treatment, after which, if (and when) a perfect donor is found, we will move our little family to Toronto for a bone marrow transplant.  We still have difficult days, but now when something seems impossible I look back and remember how far we have come, what Phoebe has gone through just to be here.  Then I look at Phoebe and she flashes me her fabulously wise grin and the road seems a little less bumpy.

1 comment:

  1. This makes me want to give bone marrow..im in tears with this...Thanks for sharing this. God Bless You ALL xxx