Alice was sick the other day. She said her stomach hurt and that she wanted to stay home from school. This child loves school. She had had a headache the two days before and a low-grade fever. On this day, she wasn't warm and she didn't have a headache anymore, but she wanted to stay home. 

I called the school and e-mailed the teacher. "Yeah, she's been feeling a little under the weather the past couple days," her teacher said. She spent the day in bed. She napped, which is unusual for her.

The next day, she was up with all her regular energy. She ate her breakfast. She smiled and laughed and danced. She was back to her normal little self, and has felt fine since. 

I'm sure she had a little stomach bug. She had a minor cold, maybe a touch of a flu of some sort. We're a few days out; she seems fine. 

But is she? 

In February, we learned that Alice carries a mutation in the SDHA gene. She has a condition called Hereditary PGL-PCC Syndrome. "PGL" stands for paraganglioma, and "PCC" is pheochromocytoma. This condition means that Alice has a heightened risk of developing neuroendocrine tumors, gastrointestinal stromal tumors, and kidney cancer. 

We also learned just last week that the radioactive iodine treatment (RAI) that Alice had in January does not appear to have eliminated all of the existing cancer. Apparently the RAI did get taken up by many of the thyroid cells, but not all of them. 

In most cases, at least up until recently, the next recommendation would be to have another round or RAI. But not for Alice because the PGL-PCC condition poses too much of a risk.

This leaves us with something of an unclear path forward. 

She has had an ultrasound of her neck, which looked clear of any thyroid cells in the thyroid bed. On May 30, she will have an MRI of her neck and chest to determine the location and size of the remaining cancer. If they can perform another surgery to get everything else out, I believe that's the best case scenario. If they cannot, I think her endocrinologist will recommend monitoring or perhaps immunotherapy. 

If Alice were an adult patient, chemo might be another line of treatment to take. If she were an adult, they might be more willing to recommend immunotherapy as there is data to suggest that this is effective against papillary thyroid carcinoma. 

But Alice is not an adult. She is eight years old, and there is not much data on treatment for pediatric metastatic thyroid carcinoma with Hereditary PGL-PCC that is RAI-resistant. 

I keep a journal of symptoms. "Symptoms & Changes" has entries like "Alice was hot today and needed to change pajamas," and "Alice complained of side aches," and "Alice had a bloody nose," and "Alice had a headache today." "Alice vomited at [this time], [this time], and [this time]" is a new one. Luckily, she does not get sick often. Certainly, she does not vomit. And of course, any second grader going to a school with hundreds of other kids and teachers and staff five days a week gets sick. So naturally, this is a common, nothing, no-big-deal cold. 

And naturally, I'm going to take note. Naturally, now, I'm going to compare and contrast these symptoms with others. Naturally, the low-grade fever and the minor headache along with vomiting that resolves within days is nothing extraordinary. But what does a low-grade fever, minor headache, and vomiting have to do with pediatric metastatic papillary thyroid carcinoma and Hereditary PGL-PCC? Probably nothing. Right? 

I had thought we were beginning our maintenance phase of this life with cancer. I knew which blood test results were the most important ones to watch, and I was reassured when they all looked like they were declining. But the thyroglobulin result, though falling some, was nowhere near where the endocrinologist wanted it to be at this many weeks post-treatment. 

The endocrinologist took Alice's case to the tumor board and consulted with a pediatric oncologist about how to go forward with her treatment given the complexities. We will be meeting with a pediatric oncologist at some point soon in order to plan when and how to screen for the additional cancer risks. I also know that her endocrinologist is talking to a specialist at Children's Hospital of Philadelphia. I am confident in our doctors. 

This is a hard place to be. We don't know where we're going. I don't want her to have another surgery, and yet I do. I definitely don't want to monitor, but we might have to do so until we are at a place where we can intervene in some way.

We are back in a fog of not knowing. 

May 30. 

The only things we can do right now are continue packing her lunch, dropping her off at school, picking her up from school, taking her to theatre, to Cub Scouts, to Trail Kids, to swimming. Continue getting her to do her homework, to eat some food, to take her medication, to take a bath. To brush her hair, her teeth. To tell her to sit down at the table, to stop letting her brothers make her so mad, to stand up for herself. We can continue to remind her that she is special, she is rare, she is kind, generous, and lovely. She is a remarkable, brave girl who has already done, and who now has to continue to do, some very hard things.