It's been so nice being "normal". This has been the longest stretch that we've been home since all this started and I've LOVED it. You never know how much you appreciate simple things like shopping trips to Target and Costco, going to the movies, lunch at the mall, going to church, having friends over...until your child is constantly in the hospital or their immune system is too weak to leave the house. I'll still take "stuck at the house" over "in the hospital" any day, but it's been so nice to have Nate's immune system strong this past week. We've taken advantage of it and done all of the above, and more.
The plan this week was as follows:
Wednesday (Chris took the day off work) : MIBG injection (the radioactive element they use to look for neuroblastoma), CT scan
Thursday : anesthesia for MIBG scan (the scan was scheduled for 12pm which meant that Nate couldn't eat breakfast or lunch...and Nate LOVES to eat)
Friday : anesthesia for bone marrow biopsy then check in to the hospital to start chemo
We had everything all planned, where we were all supposed to be at what times and who was taking care of the kids. Then I got a call right as I was about to leave for work this morning. The MIBG injection was not available today (I guess they have to get it from Canada and their shipment didn't get here), so everything had to change. Listen Cancer...I know you don't want me to plan anything...but, I have to make sure my kids are taken care of. So, I have to plan a little bit.
As of right now, we still don't have a concrete plan. Nate is due at PCH tomorrow afternoon (Thursday) for the MIBG injection and I plan on talking them into doing the CT scan. No one could give me a definite answer as to if he could get that done tomorrow, but I'd like to get as much out of the way as possible. Friday he needs to get the MIBG scan and bone marrow biopsy both done under anesthesia, but I have not yet been given a time. I'm hoping it will be early in the morning so that I don't have to starve him too long. Then, he will check in for chemo round 3. I'm also hoping the scan and biopsy will get done early so he can get started as early as possible on the chemo. The earlier in the day he starts, the sooner he can go home, 5 days later.
It's just so frustrating! I realize that Cancer now trumps all, in our life, but we do have jobs and other children to take care of. The hospital could help us out a bit. Chris took the day off from work, for no reason, and we're trying to save as many of his days off as possible for when we have to go to New York. The most frustrating thing, though, is that apparently the radiology schedulers and the bone marrow biopsy schedulers can not talk to each other! I've been asking (anyone who would listen) from the beginning if Nate could do everything under one anesthesia. I was told, after going back and forth for a week, that it couldn't get worked out and it would have to be on two different days. Somehow now, he'll only be getting one anesthesia. That's great, but why couldn't it have been scheduled that way from the beginning?!? He's going to have to get a bunch more of these scans and biopsies done through this process. I guess I better figure out how to navigate their scheduling.
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