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, April 4, 2011
We had a wonderfully normal weekend. Phoebe was given day passes on Friday, Saturday, and Sunday so on those days she arrived home in the morning, stayed the entire day, we had supper as a family, and then she returned to the hospital at 7. We had a tiny glimpse of what a normal life with two children looks like. It was busy, loud, exciting, a bit chaotic at times, and very fun. We spent a lot of the weekend outside, we were blessed with great weather and we took Mae and Phoebe for long walks to see all that there is to see at this time of year. We watched ducks and geese fight over bits of bread and Phoebe watched Mae chase after seagulls. She saw her cousins riding their bikes up and down the street and when we were at home we danced and sang and played and Phoebe sat in her highchair with us while we had dinner. She ate. She tried pureed sweet potatoes and chicken and for the first time she put the spoon in her mouth and seemed to understand what eating is all about.
Then each night after dinner, I strapped Phoebe into the car seat and off she went with her daddy, back to her room to sleep and to be fed through her feeding tube, the little bit that she missed throughout the day.
So much fun was had, that it was hard to say goodbye at seven o'clock. Hard to go back to the reality of hospital life. To chemo and feeding tubes, and a room with a view of the roof rather than a backyard. I learned this weekend that as hard as we try to recreate the comforts of home in Phoebe's little hospital room, nothing compares to home. Phoebe has been in the hospital longer than she lived at home and she has yet to sleep in her crib. The more time we spend at CHEO, the more home starts to look like a scary place, full of things that might make Phoebe sick. We worried that Phoebe would be allergic to the cat, or dust, or that the toys she played with might have come in to contact with someone with a cold or the flu. This weekend we were extremely cautious, we washed all of the toys, and the cat spent the weekend outside, and all of the wonderful things that Phoebe saw and heard while at home made up for all of our worries.
Today at 5 o'clock Phoebe received her first of four treatments of chemo. She will have chemo until Wednesday and then we will wait for her counts to recover and for any side effects of the treatment to pass. Although it is difficult to be away from home, we know that right now this is what Phoebe needs. And the reality is that we will have to go even further from home, to bring home to within our reach.