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, November 27, 2011

Day - 4

Today, my part of Phoebe's stem cell transplant began.  I received my first injections of G-CSF (granulocyte-colony-stimulating-factor).  It is a drug that will stimulate my bone marrow to make white blood cells, causing them to spill out into my blood so that the stem cells for Phoebe's transplant can be taken directly from my vein.  I will have 10 injections over the next five days and I was told to expect a lot of aches and pains, that I will probably need something to help me get through, but so far everything is good.  The actual injection itself is a bit painful, similar to a very long bee sting as the drug burns while it is being pushed in, but i'm sure it is tiny in comparison to the amount of pain and suffering that Phoebe has endured over the past 13 months.

To date Phoebe has received over 800 injections.  Two days after her diagnosis, a standard transfusion of platelets turned catastrophic when she was transfused with 10 times the amount of platelets that she needed.  Platelets are the part of our blood that helps it to clot and this overdose resulted in a giant clot developing where a femoral line had just been painstakingly put in.  It caused her tiny leg to turn dark purple and to swell to many times its normal size.  I remember worrying that she would lose her leg but being too afraid to ask if that would happen.  At the time, being so close to diagnosis, Phoebe's blood was already thick due to her high white cell count and this medical error could have cost her her life.  One nurse commented after this happened that with the high white count, "Phoebe's  blood was like porridge, and now with these extra platelets, it is like mud". Thankfully it resulted only in moments of incredible and unforgettable panic, anger, frustration and fear, and twice daily injections of blood thinners that she still receives today.   In the future, once her central line is removed and the risk for clotting lowers, Phoebe will be able to stop taking the blood thinners, but for now they serve as a constant reminder of our job as Phoebe's voice and advocate.

I wasn't going to tell this part of Phoebe's story, as our goal throughout has been to move forward, to focus on the future and to move past any obstacles that we have faced.  We are still moving forward, but in this case the past has greatly shaped the present.  While I was sitting in the chair today, feeling the pain from the injection, I thought of Phoebe and all of these pokes.  To do her story justice this part has to be told.  It has shaped us and how we have handled much of this journey.  It taught us to question everything, to forgive, to do our best to make sure that we are aware of everything that happens each day, and it helped me to understand and realize that mistakes can be made, even in hospitals. 

 Now for today and for moving on and forward.  Today is day -4 and Phoebe continues to do well.  She had a wonderful day yesterday, full of playtime, her favourite baby Einstein videos, a visit to the playroom, and a few laps around the transplant unit.  Today and for the next 3 days she will receive a new drug.  It is not a chemotherapy but works in similar way to weaken Phoebe's immune system and prepare her body to accept the new cells.  It runs over 6 hours each day and because there is an increased risk of an allergic reaction, Phoebe has to be connected to the monitor for its duration.  It is called Anti-thymocyte Globulin and is a rabbit antibody.  Again, it is incredible what has become normal in our lives.  This drug will do what a chemotherapy would do only with less toxicity and fewer side effects - Phoebe's little body has seen enough chemotherapy for one lifetime.

1 comment:

  1. Strong and beautiful Phoebe! Thinking of you more over the next few days!
    Prayers always with you all!
    Keep fighting little one!