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.

Friday, December 30, 2011

A year in pictures ...

Phoebe's latest chimerism test shows 100% donor 2 cells.  Wonderful news to bring into the new year.  In addition to this, Phoebe had a bone marrow aspiration done on Wednesday and the preliminary results show no sign of Leukemia cells.  This bone marrow sample will be sent for cytogenetics testing to look for the MLL (multi-lineage Leukemia) gene as well as minimal residual disease (MRD) testing to look deeper than what can be seen under a microscope for Leukemia cells.  The chimerism of the bone marow sample will also be tested.  The results of all of those tests should be in next week, but we are very happy with the initial news.

Phoebe has also put on a tiny bit of weight.  She had been steadily losing weight since she was discharged from the hospital so this is good news and reason for another sigh of relief.  She is now on a higher calorie formula with a bit of extra fibre, and we have started her on an appetite stimulant with the hopes that it will entice her to eat. She has eaten tiny amounts of her usual snack foods since we have been home, but one cannot live and grow on goldfish and rice cakes alone, so we are hoping to add some healthier and more nutritious food to this list.  

As the new year is approaching, I have been thinking back on all that 2011 has brought us.  It was a tough year, full of so much joy, but also a fair share of sorrow. To best explain the rollercoaster ride that was 2011, I thought I would tell it in photographs ...

We had some sad days ... adjusting life in the hospital and managing side effects from constant chemotherapy was difficult.

But we had many happy days full of playtime and new toys.

                                        We spent a lot of time "hanging out" at the hospital.

                   And we finally made it outside to enjoy some fresh air on a cool day in March. This would be Phoebe`s first time outside since her diagnosis in October. 

We celebrated birthdays. 

                                           We enjoyed walks in the fresh air and Spring. 

                                        We basked in the sunshine at the hospital's park

 And we finally made it home for day trips in April.  

        Throughout 2011 Phoebe had countless NG tubes, 6 central lines, 2 PICC lines and a hip brace. 
                     For the six months that Phoebe was in patient at CHEO, this was our bed. 
                                  We were finally discharged and sent home in late April. 

And we spent one blissful week together at home before travelling to the Hospital for Sick Children in Toronto.

The Hospital for Sick Children "Sick Kids" and Toronto was our new home for the next 2 and a half months.  

 Phoebe had her perfectly matched unrelated donor bone marrow transplant on Friday May 13th, 2011
                     Many difficult days followed.  Phoebe engrafted on day +13 and started to heal. In this picture, Phoebe is holding her soother up to her face because she knows it is a source of comfort and the sores in her mouth made sucking on it or even opening her mouth painful.  
                                               Soon, we were all reunited and ...
              before long, Phoebe was outside enjoying the "fresh"' Toronto air. 

 We made it home to Ottawa on July 16th, and on July 28th, on day + 76 we learned the devastating news that Phoebe had relapsed. 50% Leukemic blast cells were found in her peripheral blood. 
 We spent one month at home searching for options and hopeful for a cure for Phoebe, unable to accept that there was no treatment available in the world. During this time, leaving Phoebe`s Leukemia untreated resulted in 95% Leukemic blast cells in her peripheral blood. 
                                      Phoebe celebrated her first birthday on August 8th. 
                She started to eat again - pizza, avocado, and anything with garlic were her favourites. 
At the end of August we travelled back to Toronto and Sick Kids and resumed life in the hospital.  Phoebe was enrolled in a phase one clinical trial, using a promising experimental drug.  This was considered our only option at the time. 
 We also applied for a passport and prayed for a cure. 

The clinical trial proved unsuccessful, a reinduction of chemotherapy was reluctantly started at Sick Kids and with the help of our doctors we continued to search for other options.  On October 5th we boarded a plane headed to Memphis and the hospital of hope - St. Jude. 
 Phoebe was started on a protocol that used chemotherapy and natural killer cells, harvested from me, to bring about a stronger remission. 

 She continued to play, grow and do her thing. And before long we heard the wonderful news that she was back in a complete remission and ready for a transplant. 
Transplant #2 was on December 1st, using me as a partially matched donor.  Many difficult days followed, including a trip to the ICU, but Phoebe slowly healed.  Continued to do her thing ...

and was discharged on Dec. 22nd, just in time for Christmas. 

Phoebe still has many days of healing ahead of her, but we are entering 2012 in remission with 100% donor cells.  Today she started to show an interest in food again and crawled for the first time since her transplant.  2011 brought us to St. Jude and Leukemia aside it was the year that Phoebe learned to crawl, say her first words, cut her first teeth, and try food for the first time.  Her fearless big sister Mae turned 3 and appeared to learn a new word everyday, including the words "chemo", "cancer", and "recovering", the third being my favourite, as in "Is Phoebe still 'covering today?".  We are hopeful for more firsts in 2012.  

The future is bright. 


  1. beautiful pictures! what a year!
    very happy that Phoebe is doing good
    take care, Sophie

  2. I almost forgot...
    I wish you a happy and healthy new year.