We got to have a nice visit with the family on Saturday afternoon and Sunday was pretty chill, lots of chores around the house for mom and dad, and lots of video games for the kids. Eric was headache-y Sunday, so we prepared for a longer day at clinic on Monday. We arrived, access, bloodwork, and, sure enough, hemoglobin was low. First he had the platelet transfusion and then the blood transfusion so it was a long day, though fairly uneventful. Liver inflammation is down again and blast count remains low, but not zero. Eric had yet another ECG and it was fine. On the way out, Eric was complaining of pain in his right thigh but I thought maybe it was just from lying down all day and he'd be able to walk it off. By the time we got home, his pain was worse and he asked for pain meds.
It was a long hospital day and I figured Eric would need to rest Tuesday, but maybe could go to school on Wednesday. Unfortunately, his pain was worse, he wasn't able to put any weight on his right leg and he continued to need pain meds. He spent all of Tuesday on the couch in the fetal position and even though he couldn't put weight on his leg, I wanted to make sure he at least moved a little. He'd been chatting up a special LEGO set with a friend and she gave it to him as an early birthday gift. It had arrived at our house, but I hadn't told him yet and this seemed like the right time. He was so excited and immediately moved to a sitting position so he could build. He built on and off Wednesday and Thursday and it was nice to see him sitting up, happy and engaged in an activity. Thank you!!!
Aside from the pain, Eric was feeling fine. Thursday late afternoon, I took Joel to track and when I got back I noticed that Eric was flushed. I felt his forehead and he was burning up so I got the thermometer and he had a fever, which means we had to call the Oncologist on call and come into the ER. We were there for the fever, but his leg pain was so bad that I had to get a wheelchair to take him from the parking spot right outside into the ER. We got into a room immediately and actually saw the ER doctor before we even saw our nurse. We do appreciate the VIP treatment to make the ER a little less painful. Our nurse had a quiet confidence and Eric was really concerned about the port access, but she got it easily, thank heaven. They started IV antibiotics and took blood cultures, urine cultures and a nasal swab, which is the fever protocol. They also gave him some fluids and pain meds and ordered an x-ray for his leg. Four hours later we got a room upstairs on T8. It was late and Eric was so tired and cranky. His platelets had been low, so they ordered some platelets for overnight, but that means he had to have 3 blood pressures, which they call arm hugs, even though it is way more painful and much less comforting than a hug. With all that and the bloodwork and vitals overnight, Eric did not get enough sleep. The pharmacist came in at 9:40 to ask me a question and woke us up then. Eric had to stand up to pee which was agonizing and he hadn't had any pain meds, so we asked for pain meds and they brought the wrong form. Then Eric asked for toast with peanut butter and a cup of milk and the nurse came back and said there's no peanut butter, no jam and no milk. WHAT?!?! Between the lack of sleep and the pain, this caused Eric to lose his marbles. He also was saying all morning that he wanted to go home. He is so done with the hospital after 3.5 years and especially after this last season with so many stays, plus he has the LEGO set at home that he wants to finish! I was trying to cheer him up, so I went to the Gift Shop and got him a LEGO puppy to build. Also, since we forgot his favourite stuffy at home, I got him a chocolate lab puppy stuffy that he has named Charlie. I suggested he name the LEGO puppy too, but he told me you don't name LEGO.
At some point during the day, I did learn that the nasal swab was positive for Enterovirus, the common cold, which explained the fever, but he still didn't really have any symptoms, maybe a bit of a cough, and that fever only lasted about an hour. Eric had an MRI scheduled for the afternoon. Good thing Eric had his new puppy to keep him company inside the ER machine, while I kept him company in the room, but outside the machine. It took forever and I was pretty bored, and sleepy, but Eric got to watch Big Hero 6 while he was in there.
Eric's regular Oncologist came by to show me the MRI pictures and discuss the findings with me. It was fascinating to see the pictures and it definitely helped with the explanation, but I will do my best. Basically a clump of blast cells in the marrow restricted blood flow to an area causing an infarction (death of bone cells) and then the tissue all around that area is inflamed which is causing the pain. Eric's Oncologist had gone to MRI to review the images and, interestingly, while he was there, they asked about Eric's left leg because they can see the same thing healing on that leg, which explains the pain from 3 weeks ago. There is nothing we can do except manage pain and wait for it to heal.
Friday overnight was tough. Eric was up numerous times in lots of pain and not getting much sleep. Saturday morning the pain has been much better managed. Saturday evening would be 48 hours fever free and without the cultures growing, we should be able to go home. However, the doctor that came in this morning said that this is some of the worst kind of pain you can have and he was concerned we wouldn't be able to manage the pain effectively at home. We do have the same pain meds they use here, but we can only administer them orally versus the much faster acting IV. We don't have too much going on today, but Eric is having another blood transfusion. He went 3 weeks between his last two, but this time he just received one on Monday. This is likely the enterovirus burning through his hemoglobin.
Please wish Eric a less painful afternoon, evening and overnight so that he doesn't hurt but also so that we can go home!
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