It’s interesting to interact with someone who knows more than you. Eli’s doctors are smart and have much more experience than I when it comes to fighting this cancer. I’ve appreciated their expertise and learning from them.
I had been increasingly concerned by the various symptoms and side effects that have popped up the last few weeks: left eye pain, left leg pain and swelling, slightly swollen inguinal lymph node. I was generally optimistic since the eye pain had pretty much disappeared and knew that the radiation he’s received in the past to Eli’s leg can result in long term effects. So when I brought up all these issues to his doctors, and they weren’t concerned about it being caused by new tumor growth, I thought through what they said.
Have you ever felt calm and clear headed and open to learning new things and receptive to receiving guidance? That’s how I felt at Eli’s appointment while I asked questions and voiced concerns. I remeber thinking what a great learning experience it was for both Eli and me to learn about the human body and how fluids move through membranes and the way blood vessels work.
However, I did go into that appointment with a goal of moving up the PET/CT because I was nervous about the various symptoms Eli had been suffering. They just weren’t normal for Eli, but I also recognized that “normal for Eli” was changing and he can’t go through all that radiation and chemo without normal changing.
So while I sat there, listening to the doctor explain why we didn’t need to move up the scan schedule, I sought for inspiration as to whether I should push for the PET/CT to happen next week or accept the reassurance of the doctor that waiting until the time for which it was already scheduled in two weeks. Should I be that parent, who thinks she knows better than the doctors? Should I insist that scans be moved up (if it was even possible, since Primary Children’s Hospital still uses a mobile PET/CT that is only available once a week)? Should I be patient, contrary to my own nature?
That was what was going on in my head while I opened myself up for inspiration from God about what direction I should go. Then I felt peace. I felt peace that the head MRI that the doctor said would put the matter of the eye pain to rest was sufficient. So I let the matter of the PET/CT go and I didn’t insist on moving it up.
As we drove away from the hospital after the appointment and the chemo, I thought over the interaction. I thought about the changes in Eli since we started this journey and I remembered how I had taken on the responsibility of being an expert on Eli and to learn as much as I could about his Rhabdomyosarcoma so I could make informed decisions. I thought about all the experience and knowledge the doctors have that I don’t and how we work together to find the best path for Eli. I thought about God, and was grateful for access to His inspiration when I needed it.
All of this went through my mind after the MRI when I found out that I was right to want to move the PET/CT up. I also realized God was right, that the MRI was enough and once the doctors saw that there was a small tumor growing behind/ below Eli’s left eye, they moved up the PET/CT without my having to insist.
I hate being right.
What’s next? We find out what’s going on in the rest of Eli’s body. I predict that there is possible bone marrow involvement in his left leg. I predict the cancer has spread, again, to the left inguinal lymph nodes. I predict more tumors.
We will meet with the radiation oncologist about radiating the eye tumor to prevent it from causing more pain. There may be other areas we radiate, especially if the inguinal lymph nodes are swollen, thus causing the leg/foot swelling. However, since he’s already had radiation in that area, I don’t know whether we can safely radiate that area again, which is why we need doctors, because they are smart and knowledgeable.
Then we talk about treatment options. Just like in November, when the cancer started to outsmart the Regorafenib, it has outsmarted the chemo we’re on, so it’s time to switch treatment. We will discuss with the doctors possible clinical trials and see which ones for which Eli qualifies.
Then we pray. We pray to know God’s will and to seek His guidance. Then we hope.