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.

Thursday, September 15, 2011

The very hungry Phoebe Rose

Just as in the regular world of soccer moms, hockey dads and so on; in the world of pediatric cancer, there are cancer moms and dads. I'm not sure how I feel about being called a cancer mom, I would rather be a soccer mom - but such is life. We have developed very close friendships with many of the wonderful and truly amazing parents that we have met on this journey.  At CHEO, many of the rooms are semi-private, and our roommate often became a sounding board, someone walking the same road who truly understood the intense emotions that come with having a child with cancer.  I was speaking with a fellow "Cancer mum" the other day.  Her daughter is also here at Sick Kids, receiving treatment to cure an aggressive brain tumour.  What she said, captured exactly how I feel.  She told me that she feels like she has a wound.  With each day that passes it slowly heals, but each time the doctors speak to her and focus only on her daughters's risk of relapse she feels like they are putting a knife to her wound and forcing her to start the healing process all over again.  Do they think I don't know, she said, that my daughter's cancer is aggressive?   I think just as our children need to heal, so do we as parents.  We heal a little each day, and then, just as this mum described, our wounds are re-opened by a few harsh words.  We know statistics, and chances, and risks.  We really do, but when faced with the reality of this terrible disease, we choose to hope.  To hold on to our own chance for a cure.

So, here we are.  Day 2 of Phoebe's re-induction chemotherapy.  As I write this Phoebe is receiving her second dose of chemotherapy.  It is a new drug that is being used in some re-induction therapies for relapsed Leukemia, and one of the few new drugs that has been added to the long list that have  proven to be effective in treating ALL.  It is a bright and unusual colour of blue and it also comes with a long list of side effects. So far, Phoebe is handling everything very well.  Her appetite and interest in food is increasing, most likely a result of the steroids, and today at lunch time her menu resembled a page from the story 'The Very Hungry Catepillar'.  She ate half an avocado, some banana, a bit of chocolate pudding, some cheerios, a lot of zesty tomato puffs (made by gerber, Jon calls them baby junk food, and Phoebe loves them) and a few bites of kit kat.  An odd diet for a one year old, I know.  But really, whatever Phoebe wants - Phoebe gets. 

The chemotherapy causes Phoebe's other blood counts to drop and today she needed a platelet and a red blood cell transfusion.  For the second time since Phoebe's diagnosis, we learned that there is a shortage of platelets - this is the part of our blood that helps it to clot and is obviously a necessary thing.  To help to balance out the supply and demand, Jon gave blood today.  While he gave blood, Mae played, laughed and created to her heart's content in a lovely drop in centre that we discovered on the main floor of Sick Kids.  This wonderful place is for siblings of patients at Sick Kids, is open all day and is staffed mainly by volunteers from the Women's Auxiliary.  When Jon went to pick Mae up, she told him she wasn't ready yet - could he come back later?

Tomorrow morning at 10:30am Phoebe will have a bone marrow aspiration and lumbar puncture with intrathecal chemo.  The bone marrow aspiration will allow the doctors to see how well Phoebe's bone marrow is responding to treatment.  In a perfect world, it would show a bone marrow free of any Leukemia cells, but as we know very well, this world that we are living in - the world where children get cancer, is far from perfect.  So instead we will hope that Phoebe's bone marrow shows a good response to the treatment and a reduction in the number of cancerous cells.  When her bone marrow was tested a month ago, 85% of the cells were cancerous.  Her white cell count is 0.7 today which is a significant drop and proves that Phoebe is responding very well to treatment, but the real proof will be in the bone marrow. Phoebe's new treatment plan consists of 4 weeks of chemotherapy, and this bone marrow test is the first of 3.  It will be tested again in a week in order to continue to monitor progress and to ensure that Phoebe remains on the road to remission.

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