A Bean’s Life

I am extremely satisfied to report that Gavin’s second stem-cell transplant went very well today. The three of us spent the morning packing up our “normal” room to make the move to the isolation fishbowl. Before leaving, we were granted permission to let Gav have a proper soak in the tub, as we were changing the dressing, etc. of his central line directly afterwards anyway, so if things got wet it wasn’t the end of the world.

So, “bubble bath!” was had. Bean wasn’t quite as exuberant as usual but still smiled big smiles. After bath-time he got snuggled up in a flannel and carried down the hall to Room 6, where he must stay for the next two weeks. I made a big deal about the new room, admiring its many exciting features. Craig set to work wiping down all of our belongings, while Bean and I played “guys” on his bed. The latest story lines involve making and ordering pizza, getting bonked on the head and having to get a shot from Dr. Tasha (a sheep), and of course making soup and going to the grocery store. He has such a vivid imagination and adds so much creativity to his games, I am constantly amazed and delighted to see what an animated child he is.

It is especially nice for the nurses and doctors to see him so energetic and playful, because most of the kids around here feel pretty poorly and don’t have the energy to get out of bed. We we were told before the previous round that he would most likely feel terrible, go on morphine and be bed-ridden for many days. I was expecting things to be very quiet around here and was so anxious as to how he would fare. To our shock, although he was nauseated and had some vomiting, he remained almost as active and engaged as he’d ever been throughout. When we went home he was practically running around the house and kept us on our toes.

There is no guarantee that this round will go as well as the last one. In fact, we’ve been warned that it won’t, as the effects of the drugs build up over time. His nausea certainly set in earlier, but the team has been most vigilant about monitoring him, and we’ve changed his feeding schedule to try to get maximum calories in with little negative impact. He hasn’t thrown up today – yet – fingers crossed that he sleeps well and feels okay tomorrow. His counts have not hit rock-bottom yet, but he got his first transfusion yesterday, and may have to get platelets tomorrow. In the last round, he engrafted at Day +11, which is considered very fast. We may not see it happen as quickly this time. I just hope that his spirits remain high and that he doesn’t develop mucositis, as he didn’t last time.

Now the waiting begins. I already feel like a prisoner, particularly in this fetching yellow gown. I console myself with the thought that the last time wasn’t as bad as I imagined it would be, because nothing ever is. I’m writing in the dark via iPad as Gavin drifts in dreamland, exhaling the unpleasant smell that comes from the preservative they use to store the stem-cells. Some liken it to corn, but I don’t see it myself. At any rate, it doesn’t smell wonderful but will slowly fade over the next couple of days.

In the first round we practiced absolute vigilance with following the rules of hygiene to the letter, and although we were lucky and Bean didn’t develop any infections, we must not become lax in this respect. It is quite hard though, to wash your hands three million times a day, try not to touch your face and hair at all, and ensure that Gav himself is cleaned a million times a day. Basically, in between playing, it’s a lot of housework that goes on in here.

We are so appreciative of all the wonderful cards, drawings, and gifts we’ve received. Keep them coming, we have many long days ahead of us.

I am so appreciative of the wonderful friends and family I have in this world. You are all a making the difference to us, every day, I am so thankful. Please don’t forget that.

This entry was posted on Thursday, November 4th, 2010 at 11:10 PM and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.