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.

Sunday, June 17, 2012

200 magical days ...

 We are back from another trip to Sick Kids and all looks good.  Phoebe's blood work looks very good in the words of her doctor and he was impressed with how well she is doing.  They were not able to pull her line, simply because they couldn't squeeze us in to the busy schedule but St. Jude has agreed to do it on our next visit at the end of the month.  We saw more familiar faces on this visit to Sick Kids - doctors and nurses who were with us during Phoebe's first transplant, who came to check in on us after her relapse, and who were happy to see her looking almost all grown up.  Having spent so much time in the hospital, we feel very close to these people and they have made a definite impact on our lives.

After hearing good news, we set off for our first family vacation (and I use the term vacation very loosely) to Niagara Falls.  Friday happened to also be Jon's birthday so we thought, why not celebrate by watching a guy walk a tightrope across the very large, impressive and frightening Niagara Falls?  We managed to find a hotel room close to the falls with a perfect view of the tight rope so we were able to see the action in the comfort of our room and avoid the crowds.  It was fabulous and exciting to watch such a historic event and apart from a couple of long drives, it was a great weekend.  It is really wonderful to spend time together as a family and this weekend brought many firsts.  It was our first road trip where the destination was not a hospital.  Mae and Phoebe saw Niagara Falls for the first time.  It was Jon's first father's day with Phoebe at home and we had our first meal as a family of four at a restaurant.  A real restaurant (hospital cafeterias don't count).  We made sure that it was empty and looked a bit crazy as we frantically wiped down the table and high chair before Phoebe sat down in it, but we did and we had a great time.  Phoebe ate her way through Niagara Falls and the waitress marveled at her appetite and how small she is for her age.  We just smiled and nodded, not wanting to disrupt this very normal family vacation with talk of feeding tubes and Leukemia. 

Next on the hospital schedule is a visit to St. Jude at the end of the month for another chimerism test, a visit with Phoebe's transplant doctors and opthamologist and to hopefully say good bye to line number nine and all central lines, for good.

Today Phoebe is 200 magical days post transplant.  Go Phoebe go ... 


  1. Go Phoebe GO indeed!!!!!! Jenny, I am so happy you got to have these firsts. Hopefully the first of MANY. That hotel and the view of the tight rope walker sounds incredible! WOW. And I can't blame you for not wanting to describe the tubes and leukemia. As proud of this journey as you are and should be, sometimes you want to just wear big sunglasses and hide in with the "normal" crowd, right? I hear you there! I am SO happy. So very happy.... this made my night! Can't wait to see you when you come back again and CHEER as we can say good bye to line #9 for good!!!!!! Love you guys!!! So so happy for you! :)

  2. Very nice pictures of your family. You all look so happy! take care xx