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.

Friday, June 28, 2013

Croup, last day of school, and more waiting

We almost made it two weeks without a visit to CHEO. We were so close, but on Wednesday in the very early morning, Phoebe woke up with croup. She also had a fever, so off we went, our bags packed, to the emergency department. It was our shortest visit to CHEO ever and we were in and out in just over 3 hours. Phoebe got a mask to help her breathing, a dose of steroids and Tylenol, she was poked, her blood work was done which showed perfectly normal counts, and off we went. I left CHEO with a smile on my face and a bounce in my step. Even Phoebe was excited. "We don't have to sleepover?" she asked. And then she said excitedly, "we get to go home!" as we left the hospital and headed to the car. It would be my first visit to the hospital with Phoebe for something "normal". She was not hooked up to a ton of machines and admitted, I wasn't questioned by multiple doctors about her and my history and her disease, instead we saw one doctor, who was not an oncologist, and we got to sleep in our own beds.

It is the little things.

Phoebe was back at CHEO today for her monthly chemo and a visit with her doctor. Her blood work continues to look good and normal. She is scheduled for the repeat/redo bone marrow aspiration on Tuesday and we are all hoping that her cough will be completely cleared up or she may not be able to have the procedure as it requires sedation and going under sedation with a swollen airway, like that caused by croup, is very dangerous. I mentioned to Phoebe's doctor that to wait any longer for this test and results will turn me into a stressed out mess - or even more so than I already am. This waiting and this cancer is wearing me down. She commented that I would not be the only one stressed. The stress, it seems, is shared by all of Phoebe's doctor friends. We need these results soon and we need them to be good and free of Leukemia. The idea of monitoring Phoebe closely with these tests only works if we get results. And not far from anyone's mind is the monster that is Infant Leukemia.

In other, very big news, Mae had her last day of school yesterday. Her first year of school, a year that has been filled with many ups and downs, has flown by. We said good bye to her wonderful Kindergarten teachers and I had a hard time keeping my tears at bay. We were blessed this year, with an army of support from Manor Park School, and to know that Mae was going to school in a place that not only understood what she was going through, but supported her and encouraged her to share Phoebe's story, truly meant the world to us.

Phoebe is very happy to have her sister home and we are excited and hopeful for a fun-filled and uneventful (of the hospital variety) summer.

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