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.
Tuesday, July 5, 2011
286 days later
Phoebe's big city vacation starts today. She was discharged and will now be seen a few times a week at the day hospital at Sick Kids. Her platelets are 75 today, which is still low for the average person, but higher than the 50 that the doctors like to keep them above. She is holding on to her few platelets much better and requiring a transfusion about once every three days now. As for her other blood counts, her red blood cell count has been holding strong in and around 90 which is also low for the average person but great for Phoebe. No transfusions there either and the hope is that as her body starts to recover and heal, her blood counts will all climb up to within normal range. Because Phoebe is stable and not requiring daily transfusions, she is able to come home, or the next best thing; her temporary house in Toronto, as a final step before heading home to Ottawa.
The doctors are very cautious with Phoebe because she has had many complications, but also because her particular form of Leukemia is so very aggressive. They will monitor her for most of her life, and she will be watched especially closely for the next few years. During our transplant consultation we were told that once we pass the three year mark we are on safer ground, and when 5 years pass after diagnosis, Phoebe will be considered cured and cancer free.
I just returned from the pharmacy where I picked up a box full of drugs. Medications for nausea, reflux, blood clots, GVHD, and high blood pressure. Jon and I were taught how to administer these many medications, including Phoebe's two daily injections, and we have also learned how to take Phoebe's blood pressure. It is amazing what has become "normal" and what we have gotten used to. Nine months ago, I found it difficult to keep all of Phoebe's medications straight, and the thought of their side effects was incredibly overwhelming. Today we are just so happy to have our baby home and we are amazed at the thought of just how far she has come.
Phoebe has spent 286 days in hospital. She has had 3 central lines, and two PICC lines, countless NG tubes, blood transfusions, lumbar punctures, bone marrow aspirations, pokes and prods. She has had her blood pressure measured daily, sometimes 12 times a day. She has survived many life threatening complications and side effects from her life saving treatment. And through it all, she has grown, laughed, smiled, babbled, and met many very brave friends along the way. She has changed the way that I look at the world and taught me, among many, many other things to appreciate each day. We are aware that Phoebe's life may be different and that we are not technically out of the woods yet, but we are so relieved that she is here and we are amazed every day by how hard she has fought and how far she has come. And more than anything we are just so happy to have her back home with her big sister, where she belongs.