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.

Thursday, October 6, 2011

Here, happy and full of hope

Perhaps it was the very hard and serious customs officer that softened when he saw Phoebe, who shared a story with us of a friend's child who had been to St. Jude,  let Mae stamp her own passport and lingered as he wished us good luck on our journey.  The warm welcome and cheerful hello we received upon entering Mempis and St.Jude.  The triage nurse who greeted us like a ray of sunshine in a bright tye die t-shirt and got a huge and running hug from Mae - the kind of hug that is usually only reserved for very special people, or the lovely and very gentle male nurse's aid who did what I was beginning to think was impossible for someone other than Jon or I , and sucessfully rocked and soothed Phoebe back to sleep in the wee hours of the morning while I watched, speechless and amazed.  Or maybe it was the beautiful stories of hope that we heard from fellow parents.  Or that all of these things combined have made for an unforgettable and encouraging first day in Memphis. 

We are here and happy and completely amazed and overwhelmed.  What we have seen of the hospital so far exceeds my expectations.  The campus is beautiful, and inside the building there is an energy and a feeling that is impossible to describe.  On the walls throughout the hospital is art work done by former patients.  Beautiful art work that celebrates the life that has created it.  This includes an artful alphabet, letters carefully printed by small hands with words that mean something to the little people who wrote them.  Things like "v is for vomet", or" j is for joy - joyful moments when you laugh so hard your tummy hurts".  Or one that I found especially heartbreaking and beautiful "c is for cancer - cancer makes you need to prove to the world that you are strong enough to beat it".  Beautiful words and artwork created by amazing and very strong children. 

It is what i saw on the wall while getting a tour of the bone marrow transplant unit, that best captures how I feel and the energy that St. Jude exudes.  As we were being shown around the bright and colourful ward that Phoebe will call home for the next little while:  the kitchen,  play room, family lounge and laundry facilities (yes there is laundry) on the unit, another beautiful piece of art caught my eye.  Encased in a very large glass frame were row upon row of tiny and colourful paper cranes - a thousand to be precise.  It took my breath away and I stopped to admire it.  We learned that the cranes were made for a boy by his classmates while he was undergoing his fourth bone marrow transplant.  His fourth.  Our nurse explained that this particular boy is now miraculously at home and thriving.  His parents donated the cranes to serve as a symbol of hope for other families walking similar paths.  The nurse told his story, and then said simply "we don't give up, and he is one of the reaons why".  Amazing.  Incredible, and a wonderful source of hope. 

Phoebe is settling in well.  She loved the flight and happily munched on some snacks, slept and cuddled the entire way.  She seemed very excited to be out of the hospital and on the taxi ride to the airport was giggling and playing peek a boo with Mae.  Her room at St. Jude is quite fabulous and almost hard to believe.  It is about the size of a double room at CHEO, but it is all for her.  It comes complete with a big screen tv, large and almost spa like bathroom for her, and another bathroom for Jon and I, a parent room with a pull out couch, comfy chairs and another tv, and a wonderful lazy boy for rocking her back to sleep.  We are in hospital heaven.  The communal kitchen is stocked with a wide variety of snacks and cookies that Phoebe has already sampled and enjoyed.  

Our first day has been exciting, overwhelming and incredibly emotional.  To think that this place, this city that is very new to us, will be our home for the next many months is hard to believe.  We are looking forward to meeting Phoebe's doctors tomorrow and to learning exactly what the plan is, but for now we are marvelling in all of the good things - that we are finally here in this place that is overflowing with hope and love and faith, where Phoebe can get the care and treatment that she needs, treatment that will eventually and hopefully allow her to be back home where she belongs.


  1. Jenny, I am so happy to hear that not only did your trip go smoothly, it sounds like it was an adventure! I will be thinking of you all regularly, just like I did today when I munched on a kitkat.
    Your blog is just beautiful! I will be following your journey-
    Sarah (from 8B & then 8A)

  2. I forgot to say, "happy birthday"!!!