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.

Saturday, August 27, 2011

Back to CHEO

Yesterday Phoebe's white blood cell count was 34, it is still under 50 so she is still eligible for the clinical trial.  Good news.  When we left CHEO in the late afternoon we were expecting it to be our last visit for a long time.  Phoebe had other plans.  Late in the evening she spiked a fever, and when her temperature didn't appear to be coming down on its own, we packed her up in the car and headed to the emergency department of CHEO.  Because of her relapse and recent bone marrow transplant, her immune system is non-existent so a fever is taken very seriously.  We were quickly ushered in to an isolation room, blood was taken, an x-ray was ordered, and Phoebe was once again hooked up to countless wires and tubes to monitor her blood pressure, oxygen and hydration.  We saw 3 doctors and answered a thousand questions.  Much of it felt like it did in the beginning, but at times the questioning seemed to be less about Phoebe and more for the sake of satisfying curiosity.  I told and re-told stories of my uneventful and healthy pregnancy and delivery, Phoebe's first few weeks in the world, her diagnosis, her treatment ... how she is doing today both physically and developmentally all while holding an exhausted baby in my arms - after the 3rd and final doctor left I was fighting back tears and wondering how all of these questions really relate to Phoebe's fever. 

Finally at 4 o'clock in the morning, we were brought up to our room on 4 north which ironically, is the same room that Phoebe was brought to 10 months ago after she was diagnosed.  Her temperature had come down with tylenol and she was started on broad spectrum antibiotics just in case she has an infection brewing.  She didn't mind being back in the hospital crib and settled down to sleep, grateful I am sure that no one woke her up to poke her or look in her ears.

We spoke with our doctor this morning and were told that as long as Phoebe's blood cultures come back negative (without any signs of infection), we will be going to Toronto tomorrow.  Everything seems to still be on schedule to start the clinical trial and the doctors in Toronto are aware of this latest situation.  The past 5 weeks have been some of the longest weeks of our lives; full of worry and anxiety, but also of hope.  We have been clinging to the hope that we see in this clinical trial with everything we have, and we are so anxious to get started. 

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