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.

Wednesday, March 6, 2013

A picture of health ...

A whole lot of normal has been going on around here lately. Today we went to the zoo. It was "cold", and so not very busy, but we braved the weather and had a great time. Phoebe and Mae loved the animals and I walked around dreaming of a day when we might be able to take our girls to see some of these animals in a more natural environment, but for now, the zoo did wonderfully well at filling our day with joy.

Today was a day off, but for the rest of this week, Phoebe has had various post transplant tests. She has had a hearing test, which she passed with flying colours. She has had bone density and bone age tests, tomorrow her thyroid and blood work will be checked, chimerism will be sent, Friday brings an MRI of her hips, and we will know if there is anything to worry about, related to side effects from her transplant(s), as these results come in. These were the appointments that we were supposed to have during Phoebe's annual visit, which we missed due to the relapse. Embracing all things hopeful and believing that this second transplant will be her last, we thought she should have these tests. And her doctor agreed.

We have decided that since we are staying here for a bit longer, that we would try to recreate home here in Memphis. This meant moving out of our one room at the RMH, and trying out an apartment close to the hospital. Phoebe was only home in Ottawa for seven months before our world was turned upside down and the time we spent together outside of the hospital was joyful. Throughout our journey, home has been represented by many things. Home for Phoebe for many, many months of her life, has been a hospital room. We have lived in hotels, an apartment in Memphis and Toronto, the Ronald McDonald House, the Target House. The time we spend at home, wherever it may be, is precious but often not without stress and worry and so we wanted to come home to a place where we could heal. Not to criticize the RMH, but life with a family of four in one room is tough. Our new home allows for meals to be cooked, sleep to be had, and we are happy. We are taking things one day at a time, but we are happy.

Right now, I find it is too much to look forward to what may be, to what bone marrow results could show. In many ways, we are still recovering from the shock, trauma and pure heartache of this relapse. Looking at Phoebe right now, she is glowing, growing and thriving and it doesn't seem possible that she has ever been as sick as she has or that we may still have more work to do. And so, instead of looking forward a year, or even a month (or a week), we will focus on today.

Today Phoebe is a picture of health.

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