We hoped for a peaceful weekend, and on Saturday we seemed to be turning a corner. The pathologists reported seeing some monocytes in Phoebe's blood - these are often the first sign that the bone marrow is recovering, and the doctor noted that although Phoebe's temperature was still high, she had been without a very high fever for 24 hours.
On Sunday, the monocytes were gone and to add to the confusion, Phoebe started to develop a rash that now covers most, if not all, of her body. The rash seemed to bring back the high fevers and they have persisted since and are at the highest they have been.
It is a rollercoaster. Bright and early Monday morning we had a visit from the surgical team. After speaking with them and going over the many risks, we decided not to move forward with the surgery. Our days are a long drawn out conversation about risk and benefit and on Monday, the risks far outweighed the benefits. Phoebe still has no immune system. She has ongoing issues with her liver and the clotting factors in her blood. She has an infection in her belly and something in her lung. She is weak and tired. The surgeon was blunt and to the point and he said many things that were incredibly difficult to hear, but we needed to hear them. We just couldn't put Phoebe through something that had the potential to take her from us. We feel overwhelmed and confused and desperate but also relieved. It just didn't feel right and our talk with the surgeon only clarified that. Today, the doctors are still trying to fix the clotting factors and so it is clear that we made the right decision. I believe that this is Phoebe's way of telling us that yesterday was not the right time for the surgery. She is telling us, that she needs more time to heal. If the surgery is deemed necessary for her overall healing, we will revisit it when (not if) Phoebe is feeling better.
Because of the issues with the clotting factors in Phoebe's blood and the persistent fevers, the bone marrow tests and skin biopsy were also put off - first to today, and now until tomorrow.
We are anxious for answers. The bone marrow results and skin biopsy will hopefully help to guide us onto a smoother path.
Today, Phoebe sat up in her bed to play on her Granny's IPad - she seems more comfortable, a tiny bit less irritable, and she has even had some water to drink. The liver numbers that have been steadily climbing over the past two weeks, have now started to come down - they are still very high and falling very slowing but they are coming down. Today the monocytes were back and we are hopeful that they are here to stay.
The persistent and high fevers are incredibly worrisome and scary, and not knowing exactly what is causing them and how to treat it makes them more so. We hope for answers. We hope to turn a corner, and we hope for relief and healing for Phoebe.
We will try again tomorrow.
“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” Mary Anne Radmacher