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, December 18, 2011

Day +17

We are out of the ICU.  Phoebe has been back on the BMT ward since Friday.  We are still working through many issues, but she is improving.  Her rash is now completely gone, and her fevers are low grade, occuring about once or twice in a 24 hour period.  All blood cultures have come back negative so the fevers are thought to be related to engraftment.  Phoebe has been extremely sleepy and even listless and difficult to arouse at times over the past 4 or 5 days.  Her oxygen saturation levels have also dropped down to as low as 76, and there have been a few times over the past 2 days that her eyes have rolled to the back of her head - writing that down is about half as difficult as seeing it and I didn't even see it first hand.  Jon, being the very thorough and good caregiver that he is, took a video of Phoebe sleeping and eye rolling because he was concerned that she may be having a mild seizure.  He wanted to make sure that the doctors saw it and it is sometimes difficult to time these episodes with doctor visits.  The video was quite possibly one of the most frightening, and unnerving things that I have ever watched, and it reminded me of how Phoebe looks when she is heavily sedated.  The doctors think that she is in fact over sedated because of her pain medications and the fact that her body may not be metabolizing them fast enough because issues with her liver and kideys are causing a build up in her system.  They would like her to be more awake than she has been so we can get an idea of how much of this is Phoebe and how much is drug related.  So do we, so they have stopped all pain medications in the hopes that all scary eye rolling and sleepy activity stops. 

Phoebe's other issues are related to her belly and liver which are still very swollen and enlarged.  Her liver enzymes are slightly lower today, but the doctors are still keeping a close eye on all things Phoebe related because we are not out of the woods yet, and she is still at risk for developing VOD.

If I could compare going through a bone marrow transplant to something, it would be jumping out of a plane, but instead of a nice safe and gentle parachute assisted glide back to earth, you are free falling at an incredibly fast rate, anxious and panicked for a parachute to open and save your life.  The parachute opens just in time, when the ground is in site, too close for comfort, and you have already avoided colliding with various tall buildings. This obviously causes extreme stress and even some trauma to your body and you live your life aware of just how precious it is, of how close to death you once were.

Every day seems to bring with it another challenge, but it also brings us closer to a cure.  It has been almost 5 months since Phoebe relapsed, since we were told that she had weeks to live.  5 months of life, love, growth, experience, and hope.  It is amazing what can happen when a person is given a second chance.  Despite the fact that the road we have turned on to is not free from bumps, we are confident that it will eventually lead us to a smoother path.  We are day + 17, Phoebe has officially engrafted, she has a full chimerism, she is working hard to get better, and the future is so very bright. 

1 comment:

  1. wishing you the best for the holiday seasons and the most important thing, your child being cancer free. you are so strong for your daughter, you amaze me!