The doctor called last Friday. 

There appear to be changes in Alice's scans.

The doctor explained that there are a number of enlarged lymph nodes up near Alice's chin, but that at this point they do not look cancerous. However, they will be monitored. 

The CT scan of Alice's chest showed numerous nodules, including multiple new ones and many that have increased in size. 

This could mean a few things. One, that these nodules actually have been present since the original CT scan and that the growth in number and size occurred between October and when she took the radioactive iodine. Maybe, the radioactive iodine has effectively stopped growth. But, it could also mean that the growth has continued despite the radioactive iodine.  This could mean that they are not responsive to radioactive iodine ablation therapy. 

We will repeat these scans in September or October. If the spread has stopped, Alice will likely live on with lung metastases that do not affect her. People apparently do this; her breathing isn't affected now, so if they don't grow, she can likely continue on with them there. If there is yet more change, then we are in a harder place. This is when we would look into clinical trials, chemotherapy, additional drugs, immunotherapy, or a combination thereof. 

Our doctor is connecting with a specialist at Children's Hospital of Philadelphia. Over the next couple weeks, they will confer. We are trying to decide whether the specialist would like to see us over the summer, before the next scans. We won't know whether he would advise anything different until after our doctor consults with him. 

Next, Alice and little brother Frits, who also has a mutation in the SDHA gene, will be meeting with a pediatric oncologist on the 24th. Alice will likely have an MRI of her abdomen and pelvis shortly after this appointment in order to start screening for the additional risks that this gene mutation presents. Frits, as a four-year-old, may not need to start screening for a few years. I will know more on the 24th. 

This wasn't easy news to hear. I am anxious for more information. I am anxious for more appointments. I am anxious to go to Philadelphia, if that means we'd have more answers. But really I don't think we're going to get any answers until the next round of CT scans and MRIs.

This is hard.