Yesterday, we had a day off from hospital life. We took a drive to the mountains. The narrow road weaved through beautiful red rocks that towered as high and as far as we could see. Mae and Phoebe sat in the backseat in awe and for a moment we were just a regular family on a road trip. We climbed up a huge flight of stairs to the Red Rocks Amphitheater - Phoebe climbed up most of these stairs by herself and Jon and I exchanged looks as she did, both of us thinking - how can this kid possibly be as sick as she is? Later in the evening, Phoebe played with Mae and ran around our little hotel suite laughing. She ate and then ate some more and all seemed right in our little world.
Shortly after bedtime, Phoebe's daddy noticed that she just didn't seem comfortable. She didn't have a fever, so we thought maybe she was having a bad dream, but as the night went on, her breathing became labored as if she were in pain. Jon stayed awake all night to make sure she was okay, and good thing he did as at 3am she had a high fever and we were rushing to get her to the emergency room. Her little body was hot to touch. We put her in the stroller and I got ready to take her to the hospital. As soon as we got to the elevator, Phoebe realized that Jon was not with her and started to cry for her daddy. I worried she wouldn't calm down and things would get worse, so we did a quick switch and I watched from the window as Jon sprinted across the parking lot and towards the hospital. Super Daddy.
What happened next I can imagine was terrifying. Phoebe's breathing was labored, her heart rate high, she was upset and angry and was so exhausted that she was drifting in and out of sleep. All of this and they were both in a completely new and unfamiliar place. X-rays were done of her belly and lungs, blood cultures were taken as Phoebe now has a central line which is always at risk for infection, and antibiotics were started. Jon and Phoebe spent the night in the emergency room and were finally moved to the BMT unit at 8 in the morning ... exhausted.
Today, Phoebe is her usual spunky self, albeit a bit tired. She has been without a fever since late morning and is on antibiotics. It looks like she has something in her lungs - it could be an infection or it could be leftover from the croup that Phoebe had a couple weeks ago. It may be pneumonia so that is what she is being treated for right now. She is in the hospital and will remain until the blood cultures are back and she is without fevers. Any kind of infection in a little person who has a recovering and weak immune system is dangerous and it is hard not to worry.
This is just one of the things we are dealing with right now ... we also have the other much bigger problem of the relapsed leukemia to contend with, and in typical Phoebe style, things are a wee bit complicated. The results from the bone marrow are in and Phoebe has just 3% disease. This is a huge decrease from the 85% of the last test and is quite remarkable and completely unexpected, especially given how little time has passed since the last test and that Phoebe has only received steroids as treatment. It does mean, that right now, Phoebe does not qualify for the study, so while it is good news, it is also not very good as this treatment is promising and we want Phoebe to receive it. Only in the world of relapsed leukemia and clinical trials are we left wishing for more disease. All of this said, we would much rather deal with 3% than 85.
We are doing another bone marrow test on Monday and all of Phoebe's doctors plan to regroup once we receive these results to look at all of the options. There has been talk of remission, of Phoebe's immune system still having an effect on this leukemia and while we are in uncharted waters and there is so much uncertainty, it is clear that since Phoebe's first relapse and this second transplant, things are different. With Phoebe's first relapse, things spiraled out of control so quickly. There was no stopping the disease as it raged out of control. With these past two relapses, something is keeping things under control and we hope that this means that Phoebe may have other options to rid her little body of this terrible disease.
We are thankful for the ever growing and fantastic team of doctors that Phoebe has on her side. They have been nothing but wonderful here and often ask us - "what else can we do to make all of this easier for you". And then they do everything they can to make this easier for us.
We are positive and hopeful and Phoebe is living up to her reputation. Always showing us the way.
Go Phoebe go.