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.

Monday, February 20, 2012

Watching and Admiring

Day +81.  Phoebe is still without the tube, eating constantly, and doing very well.  She is yet to drink as much as she eats and is happily soothed by a cookie rather than a bottle, but she is still well hydrated and we are following her lead.  We are happy, relieved, excited, nervous, and so very hopeful.  The plan for now, in the words of one of the fabulous transplant physicians at St. Jude - a doctor who happened to be on service each and every time Phoebe ended up in the ICU, who saw her through many frightening and life threatening episodes - In his words we are "watching and admiring".  Watching and admiring as Phoebe beats down these odds and expectations and most importantly, as she beats down this Cancer.  There is no waiting and seeing being done here.   

Phoebe's blood work looked great today  - her electrolytes are perfect, liver enzymes still on their way down, and her platelets, hemoglobin and white blood cells are "normal", or as close to normal as we have ever seen.  It is a beautiful thing.  And we are full of hope for continued beautiful days.

Home was mentioned today - or at least the logistics of home.  In particular, how often Phoebe will need to be seen for blood work and where, and how frequently she will need to return to St. Jude.  Because we are international patients here at St. Jude it is complicated, mainly because of the cost of flights.  St. Jude will pay for flights to return Phoebe to the hospital for a check up visit every 3 months, but Phoebe will most likely need to be seen more frequently than that.  So, we will probably stay in Memphis a little bit longer than we expected, just to make sure it is safe for her to return home.  Before going home is considered, Phoebe will need to have her bone marrow tested on day 100 and the results of that will need to be clear, she will also need to have more t-cells than she has now.  The t-cell is an imporant white blood cell as it fights against viruses and has also been known to kill cancerous cells.  They are slower to engraft than other white cells because of the immuno-suppression that is given post transplant - at last count Phoebe had 190 t-cells and she needs 400.

We are hoping to be on a plane headed to Ottawa in late March or early April.  We, or at least 3 of us, will stay in Memphis until Phoebe is safe, healthy and ready to return home.  At some point, parts of our lives will need to return to some kind of normal - meaning Jon will have to return to work, Mae to her home in preparation for school in September, and we will need to adjust to life without frequent tests of Phoebe's blood.  To life outside of the hospital.

Phoebe has never been to a shopping mall or a grocery store.  She has never been to a playgroup, the library, or daycare.  Over the past 16 months, there have been no birthday parties or events with other children, no trips to the zoo or amusement parks.  Apart from meeting many medical professionals and other very brave children, Phoebe has been somewhat isolated from society since her diagnosis at 9 weeks old.  Once we return home we will still need to avoid many things, but slowly and as we get further from transplant, Phoebe will be able to do "normal" things. I can't wait to see the smile on her face when she participates and is able to experience all of these wonderful firsts.

I wanted to share something with all of you ... a friend recently sent me a beautiful song, explaining that it reminded her of Phoebe.  I couldn't agree more and because of this fact, I could hardly listen to it without crying.  So here it is:


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