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, October 23, 2011

Home is Where the Heart is

It is often said that home is where the heart is.  I think this is very true for our little family. For us, at this moment, home is not defined by the walls that surround us, but instead by the people who live within these walls. We bought a new house and moved in about a month before Phoebe was diagnosed with Cancer.  This new house has been lived in by all four of us for less than 3 months.  I kind of forget what it looks like.  Right now, it is our house, but it is not home.  Home is where the heart is, where Phoebe and Mae are, and where we can all be together as a family, be it the hospital, the city house, the Target House, or a tent in the backyard.

So, Phoebe is home and from the moment that she left the hospital with Jon, there was obvious excitement. When I met them at the front door, she was bouncing in her stroller, eager to get out and explore her new surroundings.  The giggling and smiling was constant as Mae showed Phoebe around her new "house".  Wonderful memories were made. 

After a night of sleeping under the same roof. We were back at the hospital today, Phoebe needed platelets and an antibiotic.  She will be out patient with very regular hospital visits, for as long as she is without a fever and doing well.  We are hoping that these wonderful days and nights together last as long as possible.

While it is wonderful having Phoebe home, it is very busy. Taking care of Phoebe while she is out patient is like having two full time jobs.  She has regular and multiple daily appointments and she doesn't travel lightly.  Phoebe is on 11 different medications right now.  Each of which is administered by Jon or I at home or on the road.  There are antibiotics, antifungals, drugs for nausea, reflux, blood thinners, and a few others.  This combined with rinses for her mouth to prevent sores, the daily maintenance of her central line and frequent dressing changes, at times it's difficult to keep it all straight.  I am thankful that Jon and I are here together, that we can share these daily and sometimes daunting tasks, and that now we can also talk, face to face, about all that is going on.

The plan right now, is for Phoebe to be seen regularly at the hospital.  On top of her many medications that she will get at home, for the next week she will also get an injection of interleukin 2 in the hospital.  This is something that we all have in our bodies, but giving Phoebe more will help to feed the NK cells, to allow them to thrive within her little body for as long as possible, so that they can best target and kill the Leukemia cells.  We like to think of it as the food that will feed the troops and make them stronger.  As always, we are taking things one day at a time, this protocol is still considered experimental, and so we are hoping and our doctors are hoping that it will do what it has done for many others like Phoebe and bring about a stronger remission. 

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