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, September 1, 2011

Back in the Big City

And so we are back.  Back to Toronto, to the "city house" as Mae calls it, and the hospital.  To juggling all aspects of life back and forth.  To surviving.  Phoebe has started her treatment and has received the first 2 doses of the study drug.  Her white cell count today is 1.5, so it has dropped quite a bit after these doses.  Our doctor also says that her liver and spleen are not as big as they were when she was admitted (the Leukemia likes to hide out in these organs which causes them to become enlarged).  There is hope and it would seem that something is working. 

Phoebe is doing very well.  As usual, she is full of smiles and she is adjusting to life back in the hospital.  She has happily had daily visits from her big sister, and many of her doctor and nurse friends from 8B. 

Her eyes were tested a few days ago, as part of the study and the opthamologist found something that was unexpected.  They told us that her vision is good, but that her optic nerves are swollen and irritated.  A few days before this, Phoebe had a lumbar puncture with intrathecal chemotherapy, but because the eyes of a patient undergoing chemotherapy are almost never tested as part of their protocol, no one knows if this in itself can cause irritation and swelling.  As it can indicate a number of very serious problems, we have had visits from neurologists and they ordered a CT scan, which did rule out most serious complications.  Our oncologist is concerned that the swelling of the nerves may be related to Leukemia.  Sometimes, the Leukemia can hide out in the nerves - he called this place their "sanctuary" because traditional chemotherapy can't get to it.  Phoebe has no symptoms of this and her vision appears to be very good, but to rule it out, Phoebe is scheduled for an MRI today.  If by chance this is what they find, then it will give us a lot to think about regarding the next steps.  There has been a lot of mention of radiation in preparation for another transplant (after Phoebe gets back in to remission), and I think that if Leukemia is found in her nerves, radiation is the only treatment that is known to get to it and it will help us to make that decision.

All of this was found by accident but in a way it is helping us to make decisions about next steps, and once again we are aware of just how aggressive this disease really is. For now, we are making progress and focusing on the good things.  Taking everything one day at a time and happily watching Phoebe's white blood cell count fall. 

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