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, October 4, 2012

I have sat down and started writing this blog post countless times.  There is so much to say, yet I don't know how to say it.  My heart is heavy.  My friends, Kristi and Logan, recently lost their sweet baby. This is a family that we met while at St.Jude, their baby Wesson, was diagnosed with Infant Leukemia and their older son, Keegan, is the same age as Mae. Mae and Keegan became instant friends and they connected in a way that I have yet to see with another little person.  Wesson was just 13 months old when he died.

Now today, another friend, another baby, another fight to survive. Brave Matthew, also diagnosed with Infant Leukemia, is now in the ICU and working so hard to overcome all of the obstacles that have been placed before him.  He is on breathing support, completely sedated to allow his body to heal.  I cannot imagine what his parents, or Wesson's parents are going through. Just the thought of all that they have seen and are witnessing brings me to tears.  It is just not fair.

We need to do better for our babies. These babies deserve more than just "options" for treatment, more than the small chance of a cure that they are given, a cure that is all too wrought with complications.  They deserve to grow up without cancer.  

Last month was Childhood Cancer Awareness month and I really struggled with what to post in this blog. I wanted to challenge everyone to give blood because one single Leukemia patient requires blood from 3 donors each week just to survive. I wanted to urge each of you to join the bone marrow donor's registry as many people who fight cancer will need this to survive.  I wanted to ask you to give. To give to organizations like St.Baldricks, St.Jude, Alex's Lemonade Stand, Cure Search, Childhood Cancer Canada and others that support and fund childhood cancer research. I wanted to tell you stories of the many children that I have met, that have inspired me and moved me to be a better person. I wanted to increase awareness and support for children fighting cancer.  Instead I wrote and I erased.  Over and over again.

Last month we lost too many friends.  We spoke with families who are in the midst of the terror that comes with treatment, the devastation that comes with complications, relapse, death. Last month there was too much grief.

Yet in the midst of all of this, we lived. 

I brought Mae to school (without tears), I played with Phoebe, I listened as complete strangers commented on how cute my sweet girl is, how small, her "unique" hair style.  To those who focused on size and hair, it took almost everything in me not to blurt out ... she is small because she has fought cancer, and as crazy as this hair is - it is precious because it is growing back for the third time. But instead I said nothing.

All around you are children who are fighting or have fought cancer.  All around you are parents who have had to say good bye to a child. Who are picking up the pieces.  We are not obvious, and you probably can't pick most of us out in a crowd.  Our children are not necessarily bald, or small, or obviously sick.

In Canada, this year, 1500 sets of parents will hear those devastating words - your child has cancer.  1500 lives will be turned upside down.  While all of this is true, the statistics surrounding childhood cancer and its support remain dismal at best.  One new drug in twenty years, 4% of National funding, a penny from each dollar raised, a disease often referred to as orphaned.  Our children deserve better.

And so, if you are able.  I would ask you to please give blood, register as a bone marrow donor.  Donate.  I truly belief that a difference can be made.  I have seen miracles happen and I have witnessed wonderful progress.  We have met many amazing people on this journey, people who are working tirelessly to save our children, to advance the cure, to better the lives of children and families who are fighting cancer. Phoebe has benefited from this progress, and she is here today because of these blood and bone marrow donors, this hard work, and these people who work tirelessly to advance the cure.

Please also take a moment and send some love and prayers to sweet Matthew and his family.  He is working so hard, as he always has, to survive and his family deserves some good news.

To register as a bone marrow or stem cell donor, please visit.

To give blood, please visit. 

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