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 kdoull@gmail.com for pick up or donation details, or drop off at 49 Columbus Avenue, in Ottawa on January 6th, 2013, between 10am and 1pm.
Thank-you!
Jenny, Dev Jude gave me your blog address and I have appreciated reading some of your story with Phoebe. Our daughter, Anna, has battled PH ALL (same as Dev's son had) for almost 12 years. She has had two bone marrow transplants and a few different targeted therapy drugs at different times during treatment. She has relapsed several times and recently stopped a trial because it was not working to control the leukemia. Now we just do chemo to try to keep the leukemia under control. I understand your heartbreak and the stuff you've been through. We so appreciate your willingness to persevere and try some of this new stuff. Anna may one day be using some of those very things. We are so torn right now as to what to do for her. She is 15 years old, too, which is hard because she has a voice in the matter, too, and she is sooooo sick of hospitals and feeling crappy. Keep your chins up - I love hearing about Phoebe running the halls and laughing - she is an inspiration.
ReplyDelete