We're settling in. Scarlett is recovering well. She is still on round-the-clock morphine, but we are working on weaning her to Tylenol. Last night, she got pretty feisty, kicking her catheter line out several times (requiring full bed changes), pulling off the bandages on her head, and eventually wiggling free from the arterial IV line, the one that took over an hour with three anesthesiologists to place in surgery yesterday (the anesthesiologist later came to tell me it was her most difficult IV placement. Ever.) She finally settled down and I fell asleep around 11, to then be woken at 2:00am to be moved to a different bed spot in the PICU. I groggily carried my bedding across the unit to the quieter, more spacious side, and settled back in on the squeaky sleep chair. Around 5, they decided to draw labs, but they couldn't get any blood through the remaining IVs, so I awoke to Scarlett screaming as they pricked her toe and heel to get enough. At 7, rounds began, so I was on deck to talk with doctors and get the plan for the day.
This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed. We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.
We are in a daze. As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts. I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing. We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning. She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand. She wanted to check in on us, and to let us know that there are still many options. Hearing the details, though, hit home.
She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems. If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital. And then she stopped short to say she was assuming we wanted to proceed with treatment.
Is there a choice? I know there is, though I can't imagine choosing to give in at this stage. Yes, we will proceed with treatment.
She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding. She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further. She said we will have to look at balancing aggressive treatment with quality of life.
Quality of life.
How did we get back to this place? How is this happening again? I was so sure, so convinced that we had left these questions far behind. She has been doing so incredibly well. Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide. Plans were made faster than we could blink, and it made things easier to not have to think about it. Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.
I know too much. I cannot forget or ignore what I have seen, read, and learned over the last two years. I have seen countless other families be faced with watching their children, their babies, die in their arms. Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few. I have read about their last vacations, their last days and the emptiness of the days, weeks and years after. I can hardly swallow, hardly breathe when I think about facing that with Scarlett. Not after everything we have been through already. The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.
This is not fair. Not for anyone who had done it before us, not for us, not for me. Not for Scarlett.
Our plan is to meet Monday, pending Scarlett has been discharged. Hope is not lost - there are options. We will learn more about them and make some decisions soon. Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals. I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.
My greatest fear is that this is the beginning of the end. It's a premature thought, and I am not giving up. But I can't deny what I have seen.