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.

Wednesday, May 25, 2011

Slow and steady

Phoebe's central line was removed successfully on Sunday and she was given 2 peripheral IV's, one in her foot and one in her hand until her infection clears and a new central line is able to be put back in.  With that out of the way, the supposed source of infection gone, we were ready to relax and take a breath.  Phoebe's little body obviously had other plans.  Although she had been afebrile for most of the weekend, on Monday evening she spiked another high temperature of 39.9 and throughout Tuesday and today her temperature has continued to be an issue.  All of her blood cultures have come back negative so our doctors are continuing to search for and treat the source of the fever with more broad spectrum antibiotics.  On top of the fevers, her liver enzymes have started to climb and the doctors suspect she has VOD (veno-occlusive disease).  It is a complication of transplant and occurs when the veins in the liver are blocked.  In Phoebe's case it is mild and treatable and the doctors are monitoring it very closely.  However, like all complications from a bone marrow transplant, it is very serious. 

Today our doctor summed up exactly how I feel. She said that she feels like she is chasing a train, that she wants to and will get on but she is just not there yet, and it is not for lack of trying. Every issue that Phoebe has has another issue or consequence attached to it.  When the liver is treated, the kidneys take abuse, medications that Phoebe needs to fight off infection cause her skin to react, or her temperature to climb. I have learned that it is a fine balance. Often when it seems like there is no light at the end of the tunnel, that we will never catch the train, something happens to strengthen my spirit and restore my hope.  Over the past few days while we have focused on all of the stress and worry attached to the many issues that are surfacing, something miraculous has been happening in Phoebe's body.  First it showed up on Monday and Tuesday in the form of .01 neutropolys.  The doctors and nurses cautioned us, saying that it could be weeks before we would see more, before Phoebe would really start to engraft.  Then today those little neutropolys grew to .03 and Phoebe's white count made a couple tiny steps forward to .2.  Slow and steady and earlier than expected, Phoebe is engrafting.  So while there are many things going on that are a source of worry, anxiety and stress, I am choosing to focus on .2.  .2 tiny warriors that like Phoebe are most definitely ready to fight. 

Tonight while Phoebe was drifting off to sleep, a cold compress on her forehead to help break the fever, I told her about .2 - those little fighters that are finally here to help her on her road to recovery.  I think she will sleep well tonight.

1 comment:

  1. Hi Jenny,
    Please give Phoebs a little kiss from me. I hope she's sleeping peacefully at the moment so those little warriors can rally some more troops. Stay strong. Have a good night and dream of the good times to come.