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, March 24, 2012

Spring is in the air ...

This week's chimerism test shows 100% donor 2 cells.  I imagine one day we won't have this weekly check up of Phoebe's blood and the thought of this fills me with equal parts joy and anxiety.  For now it serves as a wonderful sigh of relief. Phoebe Rose, she really does rock.  

This Monday Phoebe will have a bone marrow aspiration, lumbar puncture, a visit with her neurologist and opthamologist and an ultra sound.  The first four of those things will be done while she is sedated.  The bone marrow aspiration and lumbar puncture are to look for leukemia and to check the DNA of the cells.  Our bone marrow is essentially the factory that makes our blood cells and because Phoebe's cancer is of the blood, the bone marrow is where it started, where it relapsed and where we really hope it is nowhere to be found again. Ever. The lumbar puncture is being done because at diagnosis, Phoebe had a tiny amount of disease here, in her central nervous system also.  And the neurologist and eye doctor are both going to be checking to make sure her eyes and intracranial pressure are still normal and not affected by the recent addition of new drugs.  Many people will be convening inside the small operating room on Monday and we are hoping and praying that they have only good news to share.  We are anxious and worried but also incredibly hopeful that these results will help Phoebe continue on this wonderful and much needed path to a full recovery and a cancer free future.

In the meantime, Spring is in the air here in Memphis.  It is beautiful. Trees are blossoming, flowers are blooming and Phoebe and Mae are growing.  Yesterday while at the park, Phoebe climbed the stairs up to the slide. On her first attempt, she climbed up three steps, turned around and sat down to take a break and clap her hands. She has since been up and down those stairs and down the slide (with help) countless times.  She is very close to walking and for the first time, thanks to some weight she has put back on, her legs look like they might allow her to do so. 

We have heard that Spring is very much in the air in Ottawa too, and so Jon is heading home early next week. Rather than continue to let cancer run our lives, we have decided to attempt to put some of the pieces back together and this includes a return to work. This event is bittersweet.  Sweet because it means that this part of our journey is coming to an end, that Jon is now able to return to doing what he loves, and that this end will hopefully have us all back and reunited in Ottawa soon.  And bitter because we will miss him so very much.  

St Jude will miss Jon very much too. He has now donated close to two gallons of platelets and is on a first name basis with all of the nurses in the donor room. Jon and Phoebe were also recently filmed for an up and coming St Jude public service announcement. This is one of a few fundraising events that we have done with St Jude. It is our way to give back, to tell Phoebe's story and to raise awarenes for St. Jude and their mission and goal of curing pediatric cancer.

St. Jude operates as founder Danny Thomas dreamt it would fifty years ago, and that is solely on fundraised dollars, where no child or family is turned away due to inability to pay. It is with the help of these dollars, 1.7 million a day to be exact, that care is provided to countless children from all over the world, where housing is provided for their families. It is with these dollars and the help of brilliant minds that life changing research is happening, where survival rates have increased, lives have been saved, where children have been able to fight, or have been given one last chance to beat their disease. Where groundbreaking changes to the way that cancer is treated have been made. It is with these dollars and under the wonderful, supportive and unforgettable roof that is St. Jude Children's Research Hospital, that Phoebe's life was saved, where her cancer last reared its very ugly and unwelcome head and where our lives were forever changed.

And now as this chapter of our journey at St Jude is coming to an end, that is the chapter in which we live in Memphis , not the future chapters where we visit Memphis for check ups and praise from Phoebe's doctors. Now that this chapter is coming to an end, it is very hard for me to not become emotional when thinking of what this wonderful hospital of hope has done for us. How far Phoebe has come. And although her journey is far from over, we have hope and we believe that it will have a happy ending. Part of this happy ending will be in the results of Monday's tests and in the return of this family to home.


  1. I am sending you positive energy for monday's results. Sophie

  2. Thinking of you and sending positive vibes and love all day long today miss Phoebe! Jenny & Jon... I hope only good news was shared in that small operating room today!