Today was a long day and it's still going. I am writing this from the medicine room at St.Jude. Phoebe is getting more chemo and if we are lucky, we will be home at 1 am. All of this to avoid a night in the hospital.
We have the results of Phoebe's many tests and as usual, they are not straightforward.
The MRI of Phoebe's brain looks better. The inflammation is much improved and the spots that were fungal disease are stable and unchanged. These spots may just be scar tissue and there is no evidence of new infection. Good news.
The CT scan is more complicated. The fungal lesions that we have been watching for months are unchanged and still very small. They could also be scar tissue. However, there are new spots throughout Phoebe's lungs. After looking at the MRI and seeing improvement, the doctors think that these spots are not related to the original spots rather they look like they are a result of the granulocytes that Phoebe has received lately. It doesn't make sense for Phoebe's lung disease to be worse while her brain is better. The plan is to repeat the CT in a week after the granulocytes have had a chance to clear out of Phoebe's tissue. This result does make Phoebe ineligible for any clinical trials or transplant which is devastating.
The bone marrow results are about the same, around 70% disease, but Phoebe's bone marrow is empty of recovering cells. The chemo we are trying appears to be keeping things at bay and so we are continuing, but giving the doses more frequently and repeating the bone marrow tests with the CT in a week. I hoped for less disease, but I am relieved that it is not worse. Without the chemo, Phoebe's bone marrow would recover with leukemia cells.
Our day started early this morning and has been full of the ups and downs that are typical of this journey. This morning we were full of hope. Phoebe looks so good, she is full of energy, she is eating good and healthy food and gaining weight, she appears to be thriving, and we had a great visit with her doctor. We talked about a new treatment - a drug that Phoebe hasn't received yet accompanied with a new and more targeted medicine that is part of a clinical trial. Because Phoebe is a rock star and likes to swallow pills, she is eligible. Or at least she was before the CT results.
After this appointment, Phoebe insisted on walking all the way to her MRI and CT appointments, from one side of the hospital to the other. She cheerfully waved and shouted "good-bye!" as she headed in to the MRI area with her daddy. I was instantly filled with hope and pride. Phoebe, our shining star, who is able to smile and thrive amidst so much struggle.
After Phoebe was sedated for her tests and while we were waiting, we ran into her oncologist. She had already had a call from the radiologist about Phoebe's lungs and she told us the news. She looked worried and in that moment, the joy and hope that we shared earlier was gone. Just like that. The effect that this could have on further treatment is devastating.
Jon and I spent the next two hours full of worry as we waited for Phoebe to wake up from sedation. Hours later at home, we got a call from Phoebe's oncologist with the rest of the news. All hope is not lost. Phoebe probably doesn't still have invasive fungal disease in her lungs, instead it looks like it is from the granulocytes. We just need to prove this with follow up CT scans to once again be eligible for transplant and/or other trials. We are still fighting this.
Throughout the long wait for Phoebe, Mae asked questions. She is wise and smart, she has been present for too many horribly difficult talks with doctors and she has seen me break down in a mess of tears and sobs too often to be naive to all that is going on.
"If Phoebe's brain is sick again, I will be so sad". Then, "What are the cells doing? Are they fighting? Will Phoebe need to live at the hospital? Will she be so sick again? Will she need Daddy's cells? Are we moving to Target House? Will we ever get to go home to Ottawa? I miss Ottawa, but I want Phoebe to be better". Sigh ... sweet Mae. I want Phoebe to be better too.
And so, it is now close to midnight here in Memphis, and we are still at St.Jude. It has been six hours in this very small room. Four of these hours are to give medicines that we hope will help more than they will harm. All of these hours are to watch and listen to Phoebe and Mae play. Tonight they played "doctor". Their daddy was "hooked up " to fluids and "sleepy medicine". I was given "a lot of meds". At one point, Mae was whipping up some leucovoran and Phoebe's bear needed a tubie and a flush.
Another day that we are thankful for, and all we want is more. More of everything. Even the hard parts.
To add to today, Phoebe lost a tooth. It is the first she has lost rather than had pulled due to the side effects of chemo and transplant and it was a beautiful and normal moment. The tooth is already tucked safely under her pillow awaiting a very late night visit from the tooth fairy.