Rants, Raves and Ramblings

Well, we're back in 8D and back in the routine. Benjamin finished his 4th course of chemo last night. Although it was only 20 hours total over 6 days, the drugs were about 10 times as concentrated as the earlier courses. His numbers are already in free-fall; we'll see how long it lasts this time. Overall, Benjamin is in very good spirits but his hair is really coming out now (due to the stronger drugs, I guess). The blog posts have been few and far between recently due to a combination of writer's block and having no time. Last week Roger was away on business and then my parents took a well-deserved long weekend off, so things were more hectic than usual. But now I can catch up with what's been happening in our lives recently.

We returned to 8D to find the communal kitchen seriously upgraded with new paint, flatware, cookware, glassware, plates and small appliances. Wow! The regulars are taking bets on how long it will last. The problem here is that those of us who are in for long periods of time respect the space because we know we'll need it and use it. But the families who are just in for a night or two at a time every month or so don't have that same sense of "ownership" and leave the kitchen in a horrible state. Last night, I came in to wash Benjamin's bottles and found a used filter full of coffee grounds sitting in the sink along with dirty dishes. There was also an open carton of milk on the counter, and two half-full cups of coffee on the table. I threw out the grounds so I could do the bottles, but everything else stayed as it was for at least another 2 hours before it was finally cleaned up. I was so angry that I vented by making a little sign about respect and taping it up in the kitchen. It will probably get ripped down, but at least I felt better for doing it.

Yesterday Benjamin was given a beautiful handmade quilt yesterday. We've draped it over the glass dome of his crib so he can see it, but not poop or pee on it. How it came to him is a wonderful story of caring and compassion. The mother of a good friend of mine had had some prayers said for him in her prayer group before Thanksgiving. Another member of this prayer group (who is also a cancer survivor) is a quilter with a local guild which regularly donates quilts to the hospital. She asked the guild if the quilt she was currently working on could be gifted directly to Benjamin. So now Benjamin has this gorgeous quilt with a turtle pattern. Each turtle's head and tail are flaps of cloth that he can lift and hold, which he does quite happily. It might not seem like much, but this gift is so touching because someone who has never even met Benjamin was moved to do this, and because a whole group of strangers are saying prayers for our little guy. Talk about the kindness of strangers.

Hey, we're going to be on TV! Every December CFCF (the local CTV station) has a telethon, and last week a reporter, producer and camera man came to 8D to film some footage and interview some of the parents. We set up in the playroom with Benjamin on a mat in between the reporter and myself. I was miked and we were ready to roll then Emily barrelled in, practically shoved the reporter out of the way, and plopped down on the mat and to unload bagels and cream cheese from her knapsack. Then half way through the interview, Benjamin pulled himself up on me and started gnawing at the microphone. What else happened while the camera was rolling? Emily made the producer take her to the bathroom. The nurses came to start Benjamin's chemo. Emily had to leave and insisted on giving Benjamin the biggest hugs and kisses she's ever given him. Then when she left he started whining and trying to crawl after her. The producer thought this was all great, but I'm not convinced. I'm sure we'll just get a couple of nanoseconds of air time. But I'll let everybody know when those nanoseconds are.

I finally did Benjamin's beads of courage. There is a program here where a child is awarded a particular bead for each procedure or test or milestone. I never got around to starting it earlier, and had kind of lost track of some of the details, but we estimated 22 dressing changes, 17 transfusions, 14 various tests (X-rays, CT scans, ultrasounds, etc.), 5 LPs, 5 bone marrow aspirates, and on and on. Benjamin's beads are now on a 4 ft. string and I'll keep better track of it in the future. I've heard of some kids mounting their beads in a shadow box to display them after their treatment is finished. We'll see what Benjamin wants to do with them when he's older.

So that's what's new here: the good, the bad and the just plain crazy.