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, June 13, 2011
The next steps ...
Phoebe has another big day ahead of her tomorrow. Today in rounds, the doctors discussed the next steps of Phoebe's treatment. When she was diagnosed with Leukemia back in October of 2010, like 15% of infants with Acute Lymphoblastic Leukemia, her cancer had also spread to her spinal fluid and central nervous system. Throughout treatment at CHEO, Phoebe received fairly regular lumbar punctures with intrathecal chemo to kill the cancer cells that were found in her central nervous system and thankfully, following these treatments, Phoebe's spinal fluid was found to be free of Leukemia. But, as we have been told often throughout this journey, Leukemia likes to hide in the central nervous system, and so the treatment has to remain aggressive.
Before her transplant, we decided against total body irradiation (TBI), and with our doctors, chose to use high dose chemotherapy to kill the remainder of Phoebe's cancer and subsequently her bone marrow also. Because Phoebe's cancer was also found in her central nervous system, in the absense of radiation, more chemotherapy has to be given in her spine in order to ensure that it remains clear of any Leukemia.
So tomorrow morning, Phoebe will go for her first of 6 lumbar punctures with intrathecal chemotherapy. The procedure requires her to be under general anesthetic, and therefore she has to go without eating for 8 hours beforehand. In the past it has been a quick and easy process, about an hour of recovery and a happy Phoebe soon after. We are hoping for the same tomorrow. The doctors will also be testing a sample of her spinal fluid, to make sure that it is still negative for any Leukemia.
It's funny, before all of this happened, Cancer never entered my mind. Now, some days it is all that I think about. I worry constantly. I don't think this will ever go away, I think that it will always be at the back of my mind and simply a fact of our new life. However, Phoebe has taught me to cherish each day and so I don't let these worries get the best of me. Phoebe certainly doesn't. She has gone through all of this, as i'm sure she will tomorrow's procedure, with a smile on her face and a little bop of her head (we call it "dancing"). She truly is amazing.