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, September 26, 2011

A village like no other ...

Mae and I had a beautiful and perfect day yesterday.  We spent time in the sunshine at the park, we played, went down the slide what seemed like a thousand times and we laughed.  Then, while I was pushing Mae on the swing I started talking to the mum beside me, who was also pushing her child.  It was a very lovely and "normal" moment.  She told me that her daughter, her lovely, giggling, talking and walking child, was 13 months old.  I couldn't help myself, I broke down and started to cry.  I thought of Phoebe, and all that she is missing.  About all of the time that she is spending in the hospital, time that should be spent in the park.  For the first time since all of this began, I really and truly felt sorry for myself and my family.   And then I thought about Phoebe again.  About bright and shining Phoebe Rose, and how she spends her days.  She loves life regardless of where she is spending it, and I believe that one day, she will play at the park.  She will.  And we will make up for all of this lost time. 

Crying at the park aside, us cancer parents, we are really no different from any other.  Our time is spent in the hospital, we eat our meals on our laps, and we don't sleep under the same roof, but our goal and our purpose are the same.  We love, we laugh, we care and advocate for our kids, we want what's best and we do our very best to make that happen.  Because this is true, we have learned as much as possible about Phoebe's disease, about how the body works, how chemotherapy is metabolized, long term and short term side effects, the names of more antibiotics than I have ever cared to know, how they work, what they do, we know what anti-nausea drugs work best for Phoebe and how frequently they need to be given, we know how to silence a beeping IV pump at all hours of the morning, how to correct air in the line, fix an occlusion, what position Phoebe's arm needs to be in in order for her blood to flow out of her line, and I could go on and on.  I have learned more about the human body in the past 11 months than I ever thought possible.  For me that is, I never really paid attention in science class.  More importantly, this situation has changed me, at the way I look at the world and at how deeply I value time, family and friends.  Because really, at the end of the day - if you have family, friends, love, laughter and time, regardless of where you are or what you are doing - what more do you need?  

And so we are making it work.  We are surviving the emotional, stressful effects of pediatric cancer, the isolation and separation, very much because we have a wonderful support system.  It is often said that it takes a village to raise a child, and in our case, this is very true.  Our village - our community both near and far has made it possible for us to be together, to be by Phoebe's side, and the energy, thoughts, wonderful messages and positivity that is being sent to Phoebe from all of you is incredible.  Phoebe can feel it.  I know she can and it is willing her to continue her fight.  There really are no words to express our gratitude.  We are truly blessed.  And as the season of giving thanks (here in Canada) is upon us, I would like to take a moment to say what I am thankful for - the abbreviated list.  I am thankful for our families and friends. I am thankful for Jon. For all of the people who have welcomed Phoebe into their hearts and into their prayers.  For doctors and nurses who take the time to sit down and to listen, who dedicate their lives and many long days to helping people like Phoebe.  For ongoing research and people as determined to find a cure as Phoebe is to fight her disease. For Mae's spirit, Phoebe's strength and both of their resilience. And finally, I am thankful for time.  However and wherever it is spent. 

And now for Phoebe ... Phoebe is doing very well, all things considered.  She has about one low grade fever a day.  Just enough to keep her doctors guessing and on their toes.  Communication between here and St. Jude's is ongoing, the latest news being that we should really be getting on with getting Phoebe her passport. The plan for tomorrow is to do just that. Doctors on both sides of the border are working to get Phoebe the help and treatment that she needs and a move to St. Jude's is starting to seem like a real possibility.  And that is one more thing that I am thankful for.

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