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 15, 2011

Sister love

Last night Phoebe moved back to the bone marrow transplant unit, back to the fish bowl and the isolation.  We had dinner together before the move and Mae and Phoebe happily played and giggled.  I have been trying to prepare Mae for this move, and for the time that she will be apart from her sister.  It's hard but I think that she understands what is coming.  Her hugs for Phoebe were a little tighter, her touch a bit more gentle, and the time spent more attentive.  Mae, who rarely sits downs, was happy to sit with Phoebe on the couch, asking me to put Phoebe beside her so they "could cuddle".  And Phoebe was beyond happy to be sitting with her big sister.  Sister love and bonding was at its best in Phoebe's room last night.  This love between Phoebe and Mae and between siblings, is no match for the fish bowl, it will not be weakened by isolation and separation, it is a love unlike any other. 

And now today - today we are back in the beautiful and colourful bone marrow transplant ward.  Phoebe is back in her room with the big screen TV and we are back to long, lonely days of isolation. Phoebe can leave her room for walks, or to visit the playroom, but she can't leave the ward.  We spend our days playing, reading books, watching Baby Einstein, singing songs and doing what we would probably be doing if we were confined to our home for a day. With the exception of chemotherapy, antibiotics, and the sometimes constant stream of nurse and doctor visits.  Today, three different chemotherapies, with possible side effects ranging from nausea and vomiting to difficulties with the heart, liver and kidneys, were infused back to back through Phoebe's central line.  While all of this was going on, Phoebe sat up in her bed, hooked up to the monitor to measure her heartrate, oxygen levels, and blood pressure and played.  She bopped to the music of her Baby Einstein video, and played. She also talked to some friends and family on Skype.  We are very thankful for Skype. 

We are hopeful that the next four days of chemo are as uneventful as today's, and that Phoebe continues to do as well and be as happy and joyful as she is today.  And we are counting down the days until the next family reunion.



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