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.

Wednesday, July 11, 2012

Thank-you Nurses ...

Yesterday we went to CHEO to have Phoebe's blood work done.  Our doctor at Sick Kids thought that since it is only blood work that Phoebe needs, we should save the time and gas that it takes to get to and from Toronto and go to CHEO.  We did and despite the pretty intense anxiety that I feel when I walk through the doors of this hospital in particular, everything went well.  The blood work looks normal and Phoebe was happy and excited to see many familiar faces.

Being back at CHEO it is hard to believe that we lived here for 6 months.  That the very small and not at all private rooms were home to Phoebe.  It was on 4 North that Phoebe first rolled over, sat up by herself, she celebrated her first Halloween in the ICU, Christmas in room 1 - complete with an early morning visit from a very real Santa Claus, Valentine's day was in room 6 and her first Easter was in room 14.  We brought in the new year with chocolate covered strawberries and smuggled in champagne and we rejoiced in the simple and small victories that we won each day.

While we were at CHEO yesterday we went upstairs to 4 North, CHEO's oncology ward, to visit with some of Phoebe's nurses.  They were very happy to see her and the feeling was mutual.  The nurses that spend their days on this ward are some of the most wonderfully kind and caring people that I have ever met.  They take the time to get to know the patients and their families and they helped us through many long days and nights.  I remember our first night on 4 North.  Phoebe was finally out of the ICU and she was wheeled up in her big hospital crib to the place where she would spend the next 6 months.  We entered the dark room and tears instantly started to flow.  It was dark and cold - not a place where I envisioned rocking my baby to sleep, or watching her grow.  I was devastated and Jon was obviously upset.  I remember him saying - this is where we are going to live over and over again.

We stayed in that room for a long time, never coming out for fear that if we did what we were going through would be even more real.  Child life specialists and the wonderful clown, Molly Penny would come in, trying to coax us out with talk of the playroom and activities, suggesting we take a walk, or let Phoebe sit with the nurses.  Go and get a coffee they would say - I will look after your baby.  No, I would answer politely - we are okay.  I want to stay.  And in all honesty, I was afraid to leave her in those early days, even if it were just for a second.  The nurses became a constant source of support in a sea of uncertainty - we didn't know what each day would bring, how Phoebe would react or respond to treatment, what obstacle or hurdle we would face but we knew that with all of that there would be an incredibly supportive person or people to walk through it with us.  They would often sit down and talk to us about Phoebe and life - getting to know us and day after day they would calm my fears. 

Slowly 4 North became home.  The nurses and staff became family.  Phoebe shared smiles and giggles with her nurse friends and occasionally she would even let one nurse hold her.  But only one.  What we thought would never happen did - we warmed up to the very cold walls that surrounded us. And this was all the work of these special nurses, child life specialists and the wonderful Molly Penny.

Our experience at CHEO was not ideal - how could it have been given the circumstances?  It was full of worry, hurt, anger - mistakes were made and there were times when I felt like no matter how many times I spoke the same sentence to our doctors, I was not heard.  All of this is true but I have come to realize that I remember more the friendships we made, the nurses who came to love our Phoebe and care for our family and the support we felt while in their care, than the hardships we endured. 

And so I would like to do what I can to help this little hospital be as big as it can be.  To honour the people who work tirelessly to make the children on 4 North smile.  This is why we are running in the Sears Great Canadian Run.  All proceeds from this event will go to CHEO and The Hospital for Sick Children in Toronto.  The money will be used for research initiatives at Sick Kids, working to find a cure for children's cancers, and treatment of children and their cancers at CHEO.  It will go towards making the lives of these children better.

If you would like to help - please visit http://searscanada.akaraisin.com/RunOttawa2012/jennydoull

To all of the nurses and child life specialists at Sick Kids, CHEO and St. Jude, that we have had the pleasure of meeting on this journey, who have cared for Phoebe, nursed her back to health, brought smiles to our faces, celebrated our victories and supported us through our grief.  We thank you from the bottom of our hearts.  You are doing a wonderful and very difficult job and we admire you.

Phoebe at 6 months old, laughing and playing with her friend Molly Penny.

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