I can't believe another week has flown by; of course it's been another busy one. I really had no idea our schedule was going to be this intense!
Monday we had our "Weekly See" with the radiation oncologist, which is basically a quick weekly check-up. Overall, Collin seems to be handling the radiation well. He's not feeling sick, hasn't thrown up in a while, doesn't complain of his throat or anything else hurting, and doesn't seem to have much of a decrease in his energy level. He did lose a bit more weight though; according to the scale at the Proton Center, his weight went from 15.3k on Aug. 13 to 13.9k on Aug. 20. That's a little over 3 lbs in one week. I think he may have had his shoes on when he was weighed on the 13th, but his shoes certainly don't weigh anywhere close to 3lbs! It can be tough to get enough food into him during the week. Most of his radiation treatments are scheduled in the afternoon, and since he's put to sleep for each treatment and can't eat for the eight hours beforehand, he basically misses breakfast and lunch five days a week. Then, when he wakes up from anesthesia, his moods vary. Some days he wakes up happy and will eat something right away; other days he is still groggy and grumpy when he wakes up, and won't eat anything. Then when we get home, and he may or may not be interested in dinner, but even if he is, he usually doesn't eat much. I touched base with the nutritionist, but other than one or two suggestions, she feels we're doing everything we can to get him to eat; we just have to keep at it. Whatever he asks for, we'll give to him, even if it's not the most nutritious thing for him.
Tuesday morning we had a clinic visit with the oncologist. Ironically their scale showed Collin was up almost a quarter of a pound in a week. I expected that Collin would need more platelets, because he seemed to be bruising very easily. I was surprised when the labs from the day before showed that his platelets had dropped, but not low enough to need a platelet transfusion yet. The labs also showed that his hemoglobin had dropped to 8.3, which meant he needed a blood transfusion asap to get his hemoglobin back up to at least 10. The trick was fitting it into our schedule. A transfusion of packed red blood cells usually takes 3-4 hours, but there wasn't enough time in our schedule Tuesday or Wednesday to fit it in (radiation treatment times for the week are pretty much set in stone). In the end, we squeezed a transfusion in that day before his radiation treatment; he only got about half the blood because that's all there was time for, but at least it was better than nothing. His labs would be checked again in the middle of the week, and another transfusion could be more easily scheduled at the end of the week if it was needed. The oncologist had planned to start another course of chemo Tuesday, but even though Collin's platelets were not low enough to warrant a transfusion, they were too low to start the chemo. Hopefully they will be higher next week.
Wednesday was the longest day of the week; we were gone for nearly 11 hours that day! First, we had an appointment with the pediatric neuro-ophthalmologist we were referred to. We were able to get a quick appointment date due to a cancelation in their schedule, which is why we couldn't easily change the appointment for anything. The doctor was excellent, and I left after the appointment crying tears of relief and happiness. After the surgery to straighten Collin's eyes in 2011 didn't work, that ophthalmologist recommended two more surgeries. Before making any decisions, we took Collin back to the original ophthalmologist who sent us for the original MRI in 2010 for a second opinion. He disagreed with the second surgery that the other eye doctor wanted to do, but agreed with the need for the third surgery. However, he was not able to do it himself. Well, the ophthalmologist we saw Wednesday agrees with the original ophthalmologist, AND can do the surgery. She also knows of another specialized doctor who can actually insert a tiny weight into Collin's right eyelid to help it close all the way! Those two surgeries would help Collin's eyes so much!! So the plan right now is for me to really lubricate Collin's right eye for the next month. Since his right eye doesn't close all the way and I have not been good about putting drops in it, it is extremely dry and he cannot see very well out of it. She feels that some of the vision in the right eye will improve if the dryness is decreased, so I'm now putting a drop in the eye every hour while Collin is awake, and putting ointment in the eye at night when he is asleep. Then we will see her again in about a month, after Collin is done with radiation, and we can schedule the surgery to straighten his eyes. Depending on when the surgery can be scheduled, Collin and I can either stay here a little longer, or fly back down for it. After the eyes are straightened, we can look into having the tiny weight put into his eyelid.
So, after an early start Wednesday to see the eye doctor and spending a few hours in her office, we headed across Houston to the Proton Center for Collin's 2pm radiation appointment (which was #15, the halfway point of his treatment!). However, part of the gantry wasn't working, so they had people there trying to repair it. By the time everything was back up and running, it was over two hours after Collin's appointment time, and there were still two patients before him. One of the patients does her radiation treatments without anesthesia, so in an effort to not keep Collin waiting any longer, she was given the choice of coming later, or skipping her appointment. I guess the other patient skipped their appointment too, because once the machine was fixed, they treated Collin right away. Since we ended up spending about 5 hours at the Proton Center that day, we got home pretty late. Thankfully, Collin handled the delay without one complaint, even though he must have been starving! He was quite happy to spend a few extra hours playing in the playroom!
Blood was taken at the Proton Center Wednesday afternoon to check Collin's labs, and he was tentatively scheduled for a blood and/or platelet transfusion at the clinic Thursday morning before his radiation treatment in the afternoon. Thankfully his hemoglobin had increased to just over 10, and his platelets had increased a little on their own (although still not enough to start chemo), so we finally caught a break and didn't need to head downtown early for any transfusions. Thursday evening Bill arrived for a few days, and we were all very excited to see him! Today, Bill finally got to see the gantry, learn a little bit about how it works, and see the control room. It is really quite fascinating, but that will be a blog post for another time. Collin is very happy that his port is de-accessed for the weekend; no tubies means no sponge bath! Poor Collin has been talking all week about when his tubie comes out and he can take a regular bath; he truly does find joy in the smallest things the rest of us take for granted! This weekend, we're just going to have some fun, relaxing time together as a family!
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