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.

Saturday, October 8, 2011

The Fish Bowl

It is our fourth day at St. Jude and all is going well.  We had a busy first few days here, Phoebe's PICC line wasn't working well so they decided to remove it and put in a central venous line.  While she was sedated they also did a bone marrow aspiration and biopsy, so that they can get a better idea of what is going on in Phoebe's little body and to determine how much (if any) Leukemia cells are still there.  We will know the results of that on Monday. 

The doctors here have told us that they are not expecting Phoebe to be in a deep remission, and so we are taking steps to start an innovative treatment using natural killer cells, harvested from me and transfused into Phoebe following about 5 days of chemotherapy.  Natural Killer cells are a type of white blood cell, that have been found to be very effective in killing Leukemia cells and they are unlike anything that we have tried. The doctors say that this treatment should bring about a stronger remission, and the stronger and deeper a remission the better.  Following that, our hope is for Phoebe to have a transplant possibly also using my stem cells, but right now we are just taking things one day, and one treatment at a time. 

 Although she is doing well, Phoebe has seemed quite sad and depressed since we arrived, and we think that she is missing her big sister.  Siblings under 7 years old are not allowed on the transplant unit, and the best way to see each other is in an area they call the "fish bowl" - the siblings can look at each other through glass.  Mae and Phoebe spent some time making each other giggle through the glass, but it was obvious that it was not the meeting they were longing for.  We decided to see if the doctors would allow Phoebe out so that her and Mae could spend some time together.  Phoebe won't start her treatment until the 14th, so she is not technically a transplant patient, yet.  The solution was to move Phoebe to the oncology floor until she starts treatment, where siblings are able to visit.  They have yet to be reunited as Mae has a bit of a runny nose, but I am looking forward to seeing Phoebe's face when they do.  I know that it will light up with the love that she has for her sister, and I know that the feeling and the light will be mutual.  Mae told me yesterday, that "Phoebe wants her big sister back".  And she is right.

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