A conversation with Eli’s doctor over the weekend verified that they had come to the same conclusion we had: Eli’s cancer is back and metastasized. The MRI was sufficiently definitive.

We are now doing the PET/CT, which will tell us to what extent it has metastasized. We know it’s in his arm, thigh, and foot, but it could be in other places.

Eli prefers to wait until next week for the results of both scans. He’s very worried about relapse, so this process has been particularly difficult for him. (My kids: please don’t talk to Eli about this, let him enjoy the next few days before we have to start back into cancer treatment).

He was so happy last night when I told him he didn’t have to take his Septra next week. I didn’t have the heart to tell him he would have to start it again soon.

I will update this post in the next day or so, when we have the radiologist report for the PET/CT.

Update:

The PET/CT showed only the tumors we saw in the MRI reports. So, amidst the devastation of relapse, we are grateful that it hasn’t spread to any other areas beyond what we saw in the MRI. This was the news we were hoping for from the PET/CT.

Now what? We know from the MRI that there is a tumor in his right arm, one in his left thigh, and three in his left foot.

When I spoke to Eli’s doctor over the weekend, she said they will send the arm tumor off for genetic testing. This will let us know whether there are any targeted drugs that can be used against the cancer. We didn’t discuss treatment options yet, but a meeting is scheduled with us on Friday to discuss all the details. Next week, when Eli’s ready for his scan results, we’ll meet together with the doctors to include him in the decision making.

I know from talking with other parents whose kids have done treatment for relapsed Rhabdomyosarcoma, that the chemo meds they used can be really harsh. Frontline treatment for Eli only involved 7 inpatient stays, each was only one night. The rest of the chemo was in the clinic or at home. I expect that inpatient stays for relapse treatment will likely be longer and more frequently inpatient.

Anyway, the next update will be in a new blog post.