For the past four years, or since cancer entered our lives, Easter has been our holiday. Most other holidays have been a mess of hospital admissions, transplant, and relapse, but Easter, we have managed to spend each Easter since Phoebe's diagnosis out of the hospital and some have even been spent at home. Easter has always come through for us and we have many wonderful memories of beautiful and healthy spring days. This year has been different.
Phoebe has spent most of the weekend in the hospital. She is struggling with electrolyte imbalances and needs to be monitored closely. Combine this with how slowly things move in hospitals on weekends and it makes for an exhausting and long two days. We squeezed in a twenty minute Easter egg hunt in between blood work yesterday before the hospital called us to come straight back. The rest of the day was spent in a tiny room with Phoebe begging to go home. When we eventually got home, Phoebe was so frustrated and upset that she told us that Easter was finished and even the bunny should stay away.
Today we were back at the hospital and we will be here tomorrow, and the next day, and the day after that too. Phoebe has had four doses of the study drug and until yesterday, everything was very close to perfect but today we are balancing high and low electrolytes with IV fluids, a grumpy Phoebe, and hoping to get home soon.
Phoebe will have her bone marrow retested on Wednesday and following that, she will complete the rest of the study. The doctors want to determine how Phoebe's leukemia responds to the study drug alone - this is the purpose of Wednesday's test, and then how it responds to the study drug with chemo. The chemo combined with the study drug will complete the clinical trial at the end of this month.
We are hopeful but anxious. Despite all of these extra hospital visits, overall and all things considered, Phoebe seems well. She is requiring fewer blood and platelet transfusions and although she is grumpy ( I would be too), when we are at home, she is usually happy to eat, laugh and play. She has mastered the pedals on her bike (again - another victory after the stroke), and she has started to read - this last thing is simply amazing and not something we have been actively teaching. Last week, Phoebe picked up an early reader book and started to read. Jon and I watched her and he said, "how does she even know how to do this?". She is something else.
So, for now, we will keep moving forward with hope. I think I write that a lot, but it is what we do. It is all we can do. And when we spend our days with Phoebe, who against all odds has overcome obstacle after obstacle - we are blessed and continually refueled with hope.