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, January 14, 2012

The Rock

Jon is a stone mason by trade, an artist really.  He shapes, carves, cuts, and forms stones to make beautiful and wonderful things.  Fireplaces, patios, kitchens are among his creations that are displayed in homes in Ontario and Quebec.  Before any of this happened he was often called "the rock" by friends and family, alluding to his occupation but also his unyielding strength, loyalty, and determination.  Today this nickname is even more appropriate.  Jon is most definitely a rock.

Like many dads, Jon worked often when Mae was a baby, he rocked her and soothed her, but it was always after work and on the weekends.  If she woke in the middle of the night, I soothed her, if she was hungry, I nursed her - I was the go to parent and Jon was the provider.  Well, we both "provided", just in very different ways.  When Phoebe was diagnosed our routine and our priorites greatly shifted.  We desperately wanted to do whatever we could to save our Phoebe, so we put our lives on hold.  Phoebe was given a 10% chance of survival and we wanted to spend as much time with her and Mae as possible - we worried about the future, how much time we had together and we wanted to make the most of it.  We stopped working and started loving, cuddling, soothing, parenting.  24 hours a day, every day.

While Phoebe was in patient at CHEO, for the first 6 months of treatment, it was Jon that spent the majority of the nights sleeping on the chair-bed.  I was expressing breast milk that would be given to Phoebe through her ng tube and needed a private and clean place to do this.  Life in the hospital doesn't allow for very much privacy or free time, so, Jon did the night shift and I - the chatty and constantly questioning parent did the day shift.  Night after night  after night Jon soothed, comforted, rocked, settled, sang to, and loved Phoebe.  During the day he took care of Mae, brought her to playgroups and parks or spent even more time at the hospital.  He has often said that this situation has allowed him a closeness to his daughters that he would never have had otherwise.  Among many of the things that he learned as a "stay at the hospital parent" was how to comfort and sooth a baby on steroids. I challenge you to find a baby who is fussier, angrier or more difficult to settle than one who is on steroids, but Jon did it, night after night and he rarely complained.

During his quiet time with Phoebe he learned to draw with unbelievable skill, he read and read thousands of pages of history books, and he made many things better.  He donates platelets once a week, and has become something of a donor superstar in his ability to continually pump out 2 units of platelets every week.  Over the past 14 months, he has  educated himself and advocated for Phoebe's nutrition - he knows how many calories Phoebe needs as she grows and how to get them in to her in a healthy way, so that she will grow,. He has fixed cribs, made various hanging apparatuses for pumps and other medical equipment that has prompted nurses to call him "MacGyvor" and to ask if he has an engineering background.  He made Phoebe her very own personal home theatre in her crib with a small dvd player and some bungie cord, we kept track of where her injection was given by a simple stick-person drawing that he drew on the whiteboard (ingenious yet so simple!), he knows how to insert an NG tube, and regularly takes photos and videos for the doctors so that they are able to see what they might have missed.  He is often the first person to notice when something isn't quite right with Phoebe .

Today Jon, Mae and I are all in Memphis and lately I have referred often to Jon as the "unsung hero".  Looking after children is something that I have always done.  I stayed home with Mae and Phoebe and was with them 24 hours a day.  When Phoebe was diagnosed, not only did our world turn upside down, but Jon went from full time work to full time dad.  He has done this with so much grace, strength and pride that as I write this and think back I have tears in my eyes. 

There are many, many things that I wish had been different - above all I wish Phoebe could have had an easier start to life, but about the closeness that my family has developed over the past year - I would change nothing.  We have learned to live comfortably and happily in a very small 2 bedroom apartment in Memphis - a roof over our heads, love in our hearts, and hope.  Hope is what fuels us.  Don't get me wrong, our days are not always sweet and wonderful.  Going through a Cancer diagnosis, treatment and 2 bone marrow transplants with an infant and keeping a family together is not easy.  We disagree and have trouble managing life sometimes, but at the end of the day we are grateful.  Grateful for another day together, another day that Phoebe has survived and a day without Cancer.  We make it work and takes things as they come.  

And now about Miss Phoebe - she continues to do well.  She needed another transfusion of platelets yesterday which the doctors think is due to the infection, but her other blood work continues to look good.  Her hair is starting to grow again - very slowly and blond but it is there and she is still working hard at her eating.  She is a rock star, just like her daddy. 

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