Still riding the waves

This past week brought continued ups and downs.

Jenson head outbreak worsened when we woke up Sunday with large sections of scabs on both sides of his head. He was also very clingy (which he rarely does even on intense chemo weaks). He had a low grade fever most of the day. The doctor on call told us unless it got higher than 101.5 to wait until our Monday chemo appointment.

It's really heavy when your child who is already on chemo is getting worse. Is the disease worsening? Does he have a small bug with no other symptoms? Is he headed downhill for some other reason?

Monday brought some answers and more questions. They again took blood cultures to check for a staph infection. He got his first dose of chemo for the week. He does have an ear infection.

The ear infection is good news as it explains why he wasn't feeling well Sunday! It also helps explain why his head may have gotten worse... his body always flares up when he has any kind of infection or virus. So some answers.

More questions still linger though. We've noticed his eyes the last month look different. They used to be set deeper, and now they look more "buggy". I asked the doctor about it. He said chemo does not typically cause that as a side effect. He then said "I don't want to scare you, but if there are issues going on with the brain that can cause eyes to protrude more. So we need to schedule his next round of PET and MRI scans to see if the chemo is working and check his progress."

I knew we would need to have these tests done again soon, but now there is a little more sense of urgency.

One of the biggest learnings along this path is to take things one day at a time and not worry. We find it to be the hardest test along this journey since it involves someone you love so dearly and only want the best for. We're again brought back to the Bible verse that seems to be our theme:

Matthew 6:34 "Therefore do not worry about tomorrow..."