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, December 8, 2011

Slow and steady

Day + 7 today.  Phoebe continues to surprise and amaze us with how well she is doing.  She improves a little bit every day. She has no signs of mouth sores, something that plagued her at this time during her first transplant, brought on a continuous infusion of morphine, and caused extreme pain and discomfort.  Her liver enzymes, and all other things affected by transplant and chemotherapy continue to look good.  And she has more energy today, spending a lot of time playing and standing on the mat.  She is awake more during the day and she is now getting 25ml of formula an hour with no signs of nausea and no vomiting.  She even took a few sips from her sippy cup tonight. We are relieved, and so happy.

Yesterday Phoebe's blood work showed an increase of her white blood cell count.  It was .2 and her ANC (absolute neutrophil count) was 100.  Today her ANC is zero and her white count is .1.  The doctors don't technically call it engrafting until they see a steady increase of white cells and they expect her white cell count to jump around a bit because it is still very early.  They are expecting more fevers and stress on Phoebe's body with engraftment because of the way she reacted to the cells initially, so slow and steady is a good thing.  In any case, Phoebe's is working hard, making cells, and healing.  Three very wonderful and encouraging things.

In other news, Christmas is very much in the air here at St. Jude.  The effort that is made to decorate, celebrate and bring joy to an already very joyous place is wonderful.  Today Mae and I attended the first Christmas party of many.  She decorated gingerbread men and their houses, had her face painted, and Santa's elves were there, all of which made for a very exciting day for her.  At our home away from home, our small but very lovely Christmas tree is decorated and all four of our stockings are hung in hopes that both St. Nicholas and Phoebe soon will be there.

Tonight at a very special school in Canada's capital city, Phoebe's Uncle and a group of equally special, generous, wonderful and kind teachers and staff are gathering for their Christmas party.  This year they have decided to include a fundraiser for Phoebe in their festivities and for that we are very thankful.  The support of our community - our village as I like to think of it, is truly amazing.  It is allowing us to be by Phoebe's side today, and has made it possible for us to stay together as a family.  There have been times in our journey, before we arrived at St. Jude, when our time together seemed especially fragile, when Phoebe's chances for survival were thought to be very few and her time was measured in weeks instead of the many, many wonderful years that we believe she most definitely has.  We were determined to surround her with love, support, hope and faith and we believed that by doing this, we would help her in her fight for life. Thank-you Uncle Pat and his fellow staff for thinking of us, we are so lucky to have you in our lives. 

Phoebe has been especially excited and eager to stay awake tonight, full of giggles and smiles, finally closing her eyes at just past midnight.  A sign she is feeling better, but also, I am sure a reaction to all of the love and support that is being sent to her from her friends many miles away. 

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