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, December 22, 2011


What a difference a day or in this case, two days, makes.  We have some answers and very good news to share.  There is nothing on the MRI or EEG to suggest that Phoebe was ever having seizures, and the opthamologist, after looking at the video of Phoebe sleeping and eye rolling, said that it is completely normal behaviour.  He actually said it is good and something that he likes to see people do.  First sigh of relief.  Next, he examined Phoebe's eyes, and found the same swelling that the previous opthamologist reported.  It is minor, but they have started Phoebe on another medication to treat it, and the plan is to follow it and run some more tests next week to hopefully find the source of the swelling and to prevent any damage to Phoebe's eyes.  Phoebe appears to have incredibly good vision and we would like to keep it that way. 

The opthamologist had me very worried yesterday when he mentioned that Leukemia can infiltrate the optic nerves - this is something that we know from the past and the reason Phoebe had an MRI at Sick Kids was to rule it out (which it did).  Leukemia will forever be on my mind, and the fear of relapse is very real.  However, the results of Phoebe's lumbar puncture show that her spinal fluid is clear of any Leukemia, her latest  Chimerism test shows 100% percent donor cells, and the MRI shows no evidence of Leukemic infiltration.  According to Phoebe's BMT doctors, the likelihood of the optic nerve issue being related to Leukemia, is very very slim.  Almost impossible given the treatment Phoebe has received, the results of all of these tests and her twice perfect chimerism.  Second giant sigh of relief.

Phoebe's transplant related issues are also working themselves out.  Her liver enzymes are almost completely back to normal, her belly is smaller and she is no longer retaining fluid.  She is eating again, via her NG tube, and has even sampled some cheerios and other random snack food.  Her blood work looks great and she appears to be feeling better, albeit a bit depressed.  The doctors have considered all of these things and decided that Phoebe is ready to go home.  HOME.  To her little home in Memphis to spend Christmas with her family.  She will still be monitored very closely in the clinic at the hospital, and we expect to stay in Memphis for at least 100 days post transplant, but she will sleep in her crib at night, and share her days with her big sister.

We are counting up and away from all things Cancer and this Christmas will be the first of many family holidays that we will spend together. It will also be the first Christmas that we will spend as a family as last year Phoebe was in the hospital.  There are no words to express just how much this means to us.  Before we arrived at St. Jude we worried that Phoebe would not be here to celebrate her second Christmas.  Now, against all odds, not only is she here but she is in remission with a full chimerism, and her future is so bright.  What she has done to make it here is simply amazing, and we are so very proud of her. 

Thank-you for continuing to keep Phoebe in your thoughts and prayers.  Your love, support and wonderful messages and words have meant so much to us and have helped to make even the darkest days a little brighter. 


  1. Oh this just makes my heart so happy. I am covered in goosebumps as I read this post and crying tears of joy. I have been following Miss Phoebe's journey and have been praying for good things for her. So happy to hear she is defying odds and beating this thing. What a rock star!! Hope to hear you are "home" for Christmas!!

  2. Simply amazing! I am so happy for you and your beautiful family. I wish you a merry christmas with wonderful memories together, you deserve it so much!

  3. Amazing news Jenny & Jon! My husband and I follow your blog religiously. We have shed many tears together and think that you and Jon have such strength. Phoebe comes by it naturally. Have a wonderful Christmas with your precious girls. It certainly will be a special one. We are so happy for all of you.

  4. Can anything be more wonderful? We have been praying for Phoebe Rose at church and I think of her often. Not only is Phoebe Rose exceptional, both her parents are that and more. I hope you and your family have the most joyous time this Christmas. May God bless you and make 2012 the best year ever.