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, February 17, 2013
The night before radiation ...
Tomorrow Phoebe begins radiation. It will be day one of ten days of radiation, all of which requires sedation. Ten days of sedation and radiation with a toddler on steroids. We are anticipating an action packed and fun-filled two weeks.
Tomorrow's sedation and subsequent radiation will start at 12:45pm ... this means that the meal and snacks that Phoebe had tonight before she went to bed, will be her last until after she wakes up from sedation. Did I mention the steroids and insatiable hunger? Tomorrow may be a very long day.
The radiation will target Phoebe's pelvis and belly only, as this is the area where she relapsed. The hope is that this will be all she needs to ensure that these bad cells, that once hid there, will never return.
Once we are finished with radiation, Phoebe's bone marrow will be rechecked and from there and depending on the results, her doctors will put together a plan. We know that right now she has a very low level of disease in her bone marrow, but that even a fraction of a leukemia cell can cause trouble and so we will need to make sure that it is zero. Right now and since this relapse, the main problem and concern is the leukemia that appeared in Phoebe's belly, and so once we do what we can to treat that, we will move on to worrying about the bone marrow.
One day at a time.
We did have a good weekend and managed to stay away from the hospital for its duration. Phoebe is a bit more irritable than usual and she can scream like no other (I am pretty sure that everyone living at the Ronald McDonald House knows who she is), but once she is fed she is usually her happy self. The steroids seem to affect her in a different way each time and right now they cause her to scream at the top of her lungs when she is hungry. The only break from these screams comes when Jon or I asks "do you want to go to the kitchen to get some snacks?". Then, sweet relief comes in the form of goldfish crackers or pretzels or some other salty goodness. Yesterday, Phoebe ate a giant chunk of red onion. Picked it up, bit down while I watched horrified expecting her to scream that it was "too spicy!!", and then said "mmmmm, yum, this is good", and continued to reach for another. To look on the bright side, steroids are also allowing us to explore new vegetables that are often not well enjoyed by toddlers.
When not eating, Phoebe and Mae cheered on their TKE-Saw friends in the final hours of the amazing see-saw 100 hour marathon, explored the playrooms at the Ronald McDonald House and even took to the park where Phoebe took a turn on the "big girl swing" for the very first time. Our little girl is growing up and if you ask her she will tell you, very assertively that she is a "big girl".
Go Phoebe go.