We are still in patient and will stay in the hospital for at least a few days. Phoebe has a bacteria growing in her blood and central line. She also has zero white blood cells, so nothing to fight this infection with. She has been started on two antibiotics and spent most of today without a fever although her temperature jumped up again this evening. She is tired and slept most of today, leaving her bed only to go to the bathroom.
She is scheduled to start her last pulse of steroids and chemo tomorrow, but her doctor would like negative blood cultures and no fever for at least 24 hours before we do this, so it will be delayed. We may also hold the steroids as last week the combination of drugs was thought to cause a very low heart rate. This by itself is terrifying.
In her own way, Phoebe is telling us that she needs a rest.
When we began this journey, almost four years ago, I remember the first month as one of the hardest. Phoebe was a 9 week old baby and like all parents do with a new little one, we had just started to admire her beautiful smile and listen to those sweet little coos that only babies make. Then it all stopped. Phoebe didn't smile for weeks and I remember worrying that we would never see her smile again. I questioned what we were doing and felt intense guilt that is only stronger today because of all the pain that she has suffered.
Then Phoebe smiled again and like magic, the worry washed away. Or at least for a moment we were at peace. As I have watched Phoebe sleep the days away for the past two weeks, I have thought often of those days and the relief that came with the sight of Phoebe's beautiful smile. It has been almost four years since we began this journey and at times it seems impossible that we have been fighting this for so long. Phoebe's smile and spirit has kept us a float. When I think back on the past four years, I realize that I don't remember days that Phoebe didn't smile as much as I remember the days that were filled with pure joy. I don't think about the pain and nausea, the hair loss, the fatigue and all of the time spent away from home as much as I think about and admire the two brilliant and incredibly smart and sassy little ladies that Jon and I have managed to raise against all odds, in complete and utter chaos.
They are spectacular and together, we will make it through.
In all honesty, these past few weeks have been among the most terrifying we have experienced over the course of this journey. There is a fear that finds its way into our everyday. Lately this fear has been hard to overcome. It finds me waiting in line for a coffee and reduces me to tears. It keeps me awake at night.
We see Phoebe suffering, we miss her smile and personality, and we pray that at the end of this treatment, we will have made the right decisions. That this will be enough to move forward. That this will be our first step towards a life without this cancer. There is no set path or next step and we are up against incredible odds but we will always do everything we can to see Phoebe through this.
Today we spent most of the day together in Phoebe's little room. Mae did her school work and Phoebe rested. Phoebe looked like she was sleeping, but occasionally when Mae would do something silly, she would break into the most beautiful giggle. Eyes open just enough to see Mae.
We love you Phoebe.