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.

Sunday, May 15, 2011


It is day +2  and Phoebe's white blood count dropped from 1.2 to 0.2 overnight. The white blood cells are the infection fighting cells in our blood, and when they are non-existant, like in Phoebe's case right now, the body has no defences against germs and bacteria. Even the bacteria that exist naturally in our bodies can wreak havoc. Although this sounds and is very scary, it is to be expected because the high dose chemotherapy that Phoebe received pre-transplant was intended to completely wipe out her bone marrow where the leukemia was at one time, multiplying at an alarmingly fast rate.

Over the next month, we will be watching and waiting. Waiting for Phoebe's new bone marrow to start to make those very important white blood cells, red blood cells and platelets.  We will also be watching for signs of infection and of graft versus host disease.  Graft versus host disease is where the functional immune cells in the transplanted marrow recognize the host (Phoebe) as "foreign" and mount an immunological attack.  It can manifest itself in the skin, the gut, or the liver and can be a very serious side effect and complication of the transplant process.  In Phoebe's case, the doctors want some GVHD because with it comes something called graft versus leukemia.  Graft vs. leukemia is where the donor's cells will also attack any left over leukemia cells that may be in Phoebe's body.  Because Infant Leukemia is so aggressive, it requires aggressive treatment and so the GVHD and therefore GVL becomes a frightening, but very essential part of this whole process and of the cure.

Today, with Phoebe's blood counts dropping she is experiencing some side effects from the chemo.  We still see some smiles, but she is sleeping more, eating almost nothing by mouth and we are constantly changing her diaper.  On Jon's watch last night Phoebe lost close to a pound of her body weight, all a result of diarreah.  This required an almost constant changing of her diapers and the bed linens in the wee hours of the morning.  It was a busy and sleepless night.  Needless to say, she is not absorbing her feeds as well as before, and the doctors are expecting to start her on total parenteral nutrition soon.  This is a combination of fats and electrolytes given through Phoebe's central line.  It gives her belly and bowels a rest, and since the electrolytes go directly into the blood stream, they are well absorbed.  For most babies, eating is a natural thing that is well enjoyed, but for a baby like Phoebe who is going through chemotherapy, eating becomes a painful process that irritates mouth sores and causes belly aches.  Not being able to feed Phoebe "normally" is something that I have struggled with, so much so that at times it brings me to tears.  When Phoebe drinks an ounce of milk, we celebrate, when she eats half of a rice cracker we cheer - I think reaching a milestone, regardless of the child's situation is a cause for celebration, but for us, Phoebe's milestones are especially important.  The reality of this situtation doesn't allow for many normal mealtimes or opportunities to try new foods and we can only hold on tightly to the hope that one day Phoebe will join us at the dinner table and enjoy a meal just like everyone else.  But like everything else, it will take some time. 

"The two most powerful warriors are patience and time."  Leo Tolstoy

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