DAY 2
A few years back, when I was gainfully employed as an ESL teacher at the erstwhile Aspect International language school, my colleagues and I got into a hilarious debate about germs and hygiene in the staff-room. I believe I have mentioned before that both Craig and I err on the lax side when it comes to being germ-conscious. So the items on the table in the staff-room dispute were:
- hand-washing, how often is necessary?
- drink-sharing, if so, with whom?
- soap-sharing, is it okay for a couple/family to share a bar of soap?
And the list went on. As it happens, there were several people present who were serious germophobes and were disgusted by the fact that I happily admitted to washing my hands only after bathroom visits, drinking out of the same glass as most people I know and not having any issues with using the same soap as my husband. There were those amongst us who never held onto escalator railings or subway poles and carried hand-sanitizer in their pockets. I’ve never subscribed to the belief that the world at large is coated with icky germs just lying in wait, ready to pounce. Never, that is, until now.
The truth is that hospitals are full of icky germs waiting to be-sick someone. And unfortunately they are also full of people who don’t have strong enough immune systems to fight them off. For the germophobes of the world, what are you so freaked out about? If you’ve got a normal immune system, touching things in public and getting sneezed on from time to time probably isn’t going to hurt you. For the next few weeks, Gavin’s immune system will be completely wiped out, hence the isolation room.
We started chemo today, and took the opportunity to escape off the floor before we are confined to it permanently. Gavin is already getting itchy-feet in his room, and this is only the second day. We were able to run chemo and go to the “family lounge,” (which is really a poor substitute for a playroom), for awhile. He is receiving only two “drugs,” carboplatin and thiotepa, but in extremely high doses, so they have harsh side effects. Thiotepa is excreted through the skin, so Gavin has to be bathed about 4 times a day, and his sheets and clothes need to be changed frequently, and obviously diapers need to be changed hourly, wearing gloves to avoid contact with toxic waste. The thiotepa will also temporarily darken his skin, a condition which is meant to go away after a year.
We’re running chemo again tomorrow, then have one day of hydration and maintenance, then will have to move into the clean isolation room. Once in there, we cannot bring anything into the room that hasn’t been thoroughly cleaned, we will have to wear gowns while we’re in there, and to remember that we must constantly wash our hands before touching Gavin. So, if you scratch your head, you have to wash your hands. If you touch your face, you have to wash your hands. I’m already trying to get on board with the constant hand-washing, which I thought I was doing already, but apparently not! Gavin’s laundry will have to be washed on hot, then hands washed before being transferred to the dryer and double-bagged to return to hospital. Minnow will have to be washed daily – a feat I have no idea how to pull off!
Gavin was pretty happy for most of the day, but was obviously feeling pretty poorly after he woke up from his afternoon nap. He was just strangely withdrawn, and wanted to stay in bed watching Franklin for a bit. I asked him if he felt sick, and he moaned, “yeah,” in a small voice. Before I had time to get completely freaked out, he was soon up and much more his normal self, giggling at the novelty of a bath in bed and playing with his toys again. When I left this evening he was busy playing legos with Daddy, the new story-line being that Spot the dog keeps peeing on the flowers.
Both of these drugs cause severe nausea, but every child acts differently, so we don’t know just yet how Gavin will react. He is getting ondansetron and gravol around the clock to try to keep it in check, fingers crossed that it works.
Two days down, 58 to go!
Oh my friend. Thank you for being able to share, even from this new space in isolation in which you find yourselves. how hard this must be. stay strong and know that there are so many people focusing all of their energy on willing you all through this. we’re thinking about you always- Sarah & Michael
Love and support to you three!
The germophope thing is so individual – I’m like you and Craig, sharing is caring! And growing up in a family of 8 meant there was plenty of sharing for purely practical reasons. However I was stunned to discover my 13 yr old step daughter will not even share toothpaste with her brother!
Wishing you all the best as you explore a germ free as possible existence for the next little while!!!