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.

Saturday, November 1, 2014

So long ICU

We are still here. Tonight we moved out of the ICU and back onto the regular ward. There are still so many unanswered questions. The rash is back. Phoebe is still having fevers, and lately they are very high. This could be a reaction to the granulocytes or it could be an infection. Every single test that has been sent looking for viruses, fungus, and bacteria, has been negative, but we know because of MRI and CT scans, that Phoebe has something in her lungs, that she has spots on her brain and that she had bacteria in her blood. The last positive blood culture was many weeks ago on October the 4th.

We have been in the hospital and Phoebe has been having fevers for 32 days. 

There have been some improvements - we are out of the ICU, Phoebe's liver numbers are very, very slowly starting to improve, the infection in Phoebe's stomach has cleared and so we have restarted feeds through a new feeding tube that goes directly into her small bowel. Her stomach is still healing, but she needs nutrition so this way we are bypassing the stomach, allowing it to heal, and still feeding Phoebe. It also unfortunately means a new tube in her nose. Phoebe was very small to begin with, but today she is tiny. She is tiny and she looks sick. She hasn't gotten out of bed in two weeks and I honestly don't know if her little legs could hold her. She is weak, tired, and every day she endures so much to get better. Nutrition will help and so this is a big step forward. 

There have been many darks moments over the past 32 days, but there is always that light. The hope. The belief that all will be okay. 

Yesterday and today, Phoebe smiled and she laughed and although it was not a typical Phoebe laugh - the kind that she used to do with her whole self - it was amazing. The best part of this was that she did it for Mae. She usually only smiles for her Daddy. Since these smiles, Mae has spent a lot of time talking about "my sister Phoebe's beautiful smile" and how we can get Phoebe to smile for the doctors. After a lot of thought, Mae has decided that the doctors will need to hide if they want to see the famous Phoebe smile. "I know she won't smile if she sees them, so they will need to stay hidden - they can hide behind the curtain". Sweet Mae. 

Perhaps the most heart breaking part of all of this, is how it affects Mae. Mae never comes to the hospital empty handed. Each day she brings something with her to "make Phoebe smile". She shows it to Phoebe with the hope that it will in turn show her more of "her Phoebe". She is determined to bring her Phoebe back. Almost as soon as Phoebe smiled, Mae was outside her room, making sure that the doctors and nurses were aware of this important milestone. It is so important to Mae, that they see Phoebe as she does, as we all do - as bright and shining and feisty Phoebe Rose. She tells everyone who will listen about Phoebe. She tells the nurses, doctors, people in line at the coffee shop, the staff in the mail room - all about her sister Phoebe who loves to play and run. She tells them about when Phoebe would pinch and chase her with a look of pure longing on her little face. What Mae wouldn't do to be chased and annoyed by her little sister. She talks about Phoebe and she asks when Phoebe will be better. She worries and wonders if Phoebe will ever get better and with each question and worry, my heart just hurts. None of this is fair, but this, this is the most cruel.

Yesterday I harvested another unit of granulocytes and Phoebe received them all late last night and early this morning. Unlike the last "harvest" that was split and given on two separate days, the doctors decided to give all of these cells at once. I am able to give just 6 times in 6 months, so the plan is to give Phoebe as many cells as we can over the next few weeks to fight these infections, if this is what she continues to need.

The real hope is that Phoebe's own healthy cells will begin to recover and do the work of these temporary granulocytes so that we can move forward. There have been signs of count recovery and although the doctors are hesitant to say that we are turning a corner, I believe we are on our way. 



1 comment:

  1. Hang in there. You are in our prayers every night phoebe rose.