Does this hurt? Or this?...

Mom and Carter snacking

Carter was up for a couple minutes every hour or two last night. He is just restless and seems to have some pain. And he doesn’t want to sleep with his head on the pillow, only on Mom. We’re working with the doctors to figure out exactly where the pain is coming from, in order to give him the proper medicines. One of the chemo drugs has a side effect of jaw pain, so we’re keeping a closer eye on that as well. Carter couldn’t eat or drink anything after midnight last night (not that he has been wanting to) because he was having a hearing test this morning (under general). They will do this test before or after every chemo cycle to make sure one of the chemo drugs he is on is not causing hearing loss. The doctor said everything is looking good so far.

Then mid-day, Matt and I were about to give Carter a bath and do our first changing of the Broviac dressing when someone came in and said he was ready to administer Carter’s shot for the next test. We hadn’t heard about another test that day, and were thrown off guard. Well, this test involves giving him some radioactive dye into his IV for three hours prior, then they do a scan to see if the cancer has spread to Carter’s bones at all. This would be a baseline test for the future. Oh, and by the way, if you are pregnant, you have to leave now and can’t see Carter for 40 hours! What?!! They said we could reschedule for tomorrow, but that just pushes everything out one more day. Matt said he was fine, and that I should just go. The doctor said I could return in 24 hours, but can’t have direct contact with Carter (changing diapers, saliva, sweat, etc) for 40 hours. Luckily, Matt is feeling better…it looks like he’s spending the next two nights at CHOC! I had been shunning Matt all weekend from the hospital for having a cold, and I got a taste of my own medicine. I left wondering if I should cry, or just be thrilled to go home and spend time with Bennett. Matt is going to have to be Carter’s advocate in helping to find a solution to his pain, and I know Matt will do a great job.

So, after I left, Carter had the radioactive IV and Matt had a full day. He gave Carter a bubble bath, which I hear went much better than Carter’s first bath experience at the hospital. He was doing bubble beards and showing all the nurses that came in. Then, Matt changed the Broviac all on his own with the nurse’s supervision. Yeah! Later this afternoon, Carter had the bone scan. They had to hold him still for over a half hour, but Dad said Carter did great. We’ll get the results when we meet with the oncologist tomorrow afternoon.

This was the most active day Carter has had in a while, but maybe it was good for him to be up and around more. Matt said the nurses feel Carter is doing better than yesterday. The oncologist had told us in the morning that Carter would probably not being going home on Thursday. We want to be more confident with how he is feeling and reacting before going home. The doctor even said some patients stay in the hospital between the first and second round of chemo. We hope this isn’t the case, but we want Carter to be feeling a little better before going home as well.

I want to say a couple extra “thanks”…Thank you to Shannon for not listening to me when you asked if I needed help with anything, and you flew down from SF, got in a rental car, and (literally) showed up on our front porch. Bennett had a blast with you and Becca, and it was nice to have someone to chat with at the hospital. And thanks to Bec for all those meals you made with Shan, and spending the evening with Benny. Also, Kristen Venick I don’t know what I would do without your wisdom and friendship. Of all the ailments Carter could have had, I guess we are grateful it is liver cancer with you as a pediatric oncology nurse practitioner at UCLA and your husband as a pediatric gastroenterologist and oversees liver transplants at UCLA. What is the chance?! You are so smart and level-headed and the perfect resource and friend at a time like this! Thank you everyone for your continued support!!!