Today marks two weeks in isolation and in the hospital for Phoebe. When we arrived with a fever two weeks ago, we never imagined that we would still be here and that so many things would be happening. We never imagined that so many things would be going wrong.
Phoebe has had countless fevers over the past 4 years. Most of the time we would find an infection of some kind, treat it, and Phoebe would be home or be better within 48 hours. Sometimes nothing was ever found to be the cause, but she would still be better within a few days. This is not like that at all. In fact, despite all that she has been through, I can't remember a time when Phoebe has been as sick as she is today. It feels like just as some things begin to fall into place, other things fall apart. We are seeing improvements following the stroke, but Phoebe is still having fevers and she is just not better.
I hesitate to write all of this down because, to be honest, most of the time, I am writing through tears and it is just so hard. I appreciate everyone who continues to read and follow and pray for Phoebe.
Today all of Phoebe's doctors, and there are now many, sat down to discuss Phoebe's many issues. They have decided to make a few changes with the hope that it will help Phoebe recover from these infections while minimizing the side effects from all of the medications. Phoebe is still having fevers, they seem to be less frequent, but they are still very much there. She has inflammation in her gut. Her liver is showing signs of distress that has yet to improve. She is miserable, sad, and depressed. She is still neutropenic with no white blood cells in sight, and today she required another blood and platelet transfusion. For some perspective - most people have at least 150 platelets in their blood and this morning, Phoebe had 9. Most people have a hemoglobin of around 12, today Phoebe's was 5.8. These are critically low levels and without the help of blood donors, we would not be able to fight the many problems and issues we are fighting. We simply wouldn't have a chance. To all of you out there in the world who donate blood and platelets, thank-you.
The doctors are trying everything they can and for this we are grateful. There are no clear answers right now, no right path to take, and there is no one that can tell us what will happen. We can only surround Phoebe with as much love as possible and hope that things will start to improve. Phoebe has shown us over and over again that anything is possible, and we will always believe in her. She is amazing.
Please continue to keep Phoebe in your thoughts and prayers. Tomorrow she will have a repeat MRI and CT scan to monitor the progress of the infections that were seen on previous scans.