On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk Infant Acute Lymphoblastic Leukemia. A rare and not well understood, difficult to treat and cure, Leukemia. Her journey has been long and difficult. Phoebe has endured 6 months of high dose chemotherapy, a bone marrow transplant, a devastating relapse, a phase 1 clinical trial, Natural Killer cell therapy and a second bone marrow transplant at St.Jude Children's Research Hospital, a year without cancer followed quickly by another relapse, followed by radiation and more chemotherapy ... and remission. This is her story of hope and triumph in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.
Saturday, December 29, 2012
Phoebe the Rockstar
We have been able to get Phoebe out of the hospital during the day since Christmas Eve, returning around bedtime for overnight hydration and blood work, and hoping for some sleep.
Phoebe has been on steroids since all of this began and they are seriously affecting her sleeping schedule. She has gotten used to something of a rock star's schedule and is often in bed and asleep around 4am - earlier if we are lucky. The time before 4 am is often spent jumping on the bed, laughing, playing, or running laps around the ward. Thankfully, however, they have not affected her mood and she is still happy and joyful Phoebe, albeit a bit feistier. It is hard to tell though if this is typical two year Phoebe or Phoebe on steroids.
We are grateful for this time at home and the return to a somewhat normal life, even if it is only during the day. We have enjoyed meals together, lots of play time, time outside in the snow, and Phoebe has had her first ride on a sled (which she loved).
There really is not a lot to do at CHEO during the day (or night), especially during the holiday season as the play room is most often closed, and we can only walk around the ward and look at blank walls so many times before Phoebe gets bored and asks to go home.
So home we have gone and we are hopeful that this will continue.
Phoebe still looks wonderful and is full of energy and smiles. Only time will tell, how the chemotherapy and steroids she has received up until now have affected the size of the mass, but we are hopeful. Hopeful and anxious to put the second part of this plan into place and learn about what awaits Phoebe next for treatment of her disease.
We are grateful for all of the love and prayers that are being sent our way from all corners of the world, as well as corners close by - including the wonderful and thoughtful staff at CHEO, who have once again, become like family.
We have been the very thankful recipients of acts of kindness from strangers, friends, neighbours, family, and our wonderful community and we appreciate every word, act, gift, thought, prayer and message of hope.
A friend told me recently that she has been visualizing Phoebe walking across the stage as she graduates from University. What a wonderful image, and now whenever I am feeling overwhelmed or saddened by all that we are up against, I close my eyes and I picture beautiful Phoebe Rose - with curly hair like her Daddy and full of smiles, proudly marching across that stage. I can see her.
Friends and family are organizing a bottle drive in support of Miss Phoebe Rose. If you find you have extra empty wine and beer bottles after the holiday festivities and would like to donate them to help us to navigate the next path of Phoebe's treatment, please contact email@example.com for pick up or donation details, or drop off at 49 Columbus Avenue, in Ottawa on January 6th, 2013, between 10am and 1pm.