Prayer Circle and a Week Out

It has been awhile since my last update, I just find life at home to be too full of dishes, laundry, toddler-chasing and TV to attempt much blogging.  It has been a very busy week for us with a family party, two hospital visits, a night out for me, and friends and family coming over to say hi, now that Gavin is in a good place.

Last weekend the non-sniffly members of my family joined us at my parents’ house in Toronto to have a little celebration of Gavin, plus a brief and informal prayer circle.  I wondered how Gavin would react to being in a house full of people when he’s used to being alone with us most of the time.  The answer was that he was perfectly charming and ran around enjoying himself.  We took a few brief moments to meditate together on Gavin’s healing. I had not worked this part out ahead of time,  so had no idea what I wanted to say.  I didn’t want to crumble into a weepy ball so I kept it brief, which was probably for the best because Gavin was ready to run off and play anyway. I want to extend my deepest thanks to my family members, biological and non, for being there with us.

We were lucky to make it to the celebration at all, as we had to spring Gavin from the hospital after literally begging the doctors to LET US OUT! It was a very long week in hospital. We were isolated almost the whole time as Gavin had a runny nose, so worries of infection kept us locked in our cell.  It was becoming difficult to entertain the little man at times, but he was so unbelievably patient and understanding of what was happening.  He’s truly a remarkable child.

There were many procedures for one week.  Bean had to undergo all the regular testing done in between rounds of chemo, so he had a GFR, ECHO and his first trip to the dentist, not to mention his MRI.  For the first part of the week he wasn’t feeling great, but began a pretty good recovery.  By the time we were finally discharged on Sunday the 26th he was really ready to get out of there. That was our fifth discharge, I believe.

Of course, we had to return to the hospital the  very next day, for Gavin’s audio test.  The two previous tests hadn’t gone very well as they’d been booked for the entirely wrong time of day. 2:00 pm is just not a good time to introduce toddlers to new concepts, and Gavin found the sound-proof rooms and disembodied voices creepy.  I pleaded with our contact nurse to ensure that this one would be in the morning.  Luckily for us it was at 10:00 and the audiologist who conducted it was fantastic.  She really tried to understand Gavin’s needs and opted to give him the test for older children rather than the standard for his age.  It worked like a charm, once he understood what he needed to do, he flew through the test, to everyone’s astonishment.  The audiologist commented that she’d never seen a two-year old do the test so successfully. I was so relieved to learn that Gavin’s hearing has not yet been affected by his treatment.  There is a small chance that his hearing won’t be negatively impacted, but it’s very small. He most likely will lose his hearing to some extent.  However, I’m choosing not to focus on that, but instead believe that he will be in the minority who makes it through somehow with his hearing intact.  I know that suffering hearing loss is not the end of the world, but he has so many challenges, surely partial deafness shouldn’t be added to the list?

We’ve had a bit of a break, as we expected to be back in hospital this week, but unfortunately, or fortunately, depending on how you look at it, Gavin’s counts were not good enough to proceed with the stem-cell harvest.  So we got to be home for the week! We were in Wednesday for bloodwork and a meeting with the BMT team to discuss high-dose.  Um. Not thinking about that just yet.  While Gavin was in the waiting room with my mom, he slipped off of one of these silly little stools they have there and banged the back of his head on a wooden chair.  Banged it ON his incision.  Of course, we had to have him assessed and then hang around for ages just in case.  Every time something like this happens, I feel awful. There is just no way to prevent this kind of thing from happening, apart from holding onto him all the time, which is of course not possible.  Luckily, his platelet count was up and so he was just bruised.  Still.