LINZY – I’m downstairs, and he’s upstairs. He who is the one who shall not be named. My son. My other son. I am hiding from my son. Mike, Chris, and I are at The Boston House in Brookline, MA. My boy had another follow up visit because he’s a bone marrow transplant patient, (just incase you are new to our story). His little sister is at home with a fever, so we are shacking up here for the week. Which is also perfect because Chris has IVIG infusions everyday this week over at Mass General. At least Mass Gen set him up with a cozy suite, snacks, and a TV for his treatment this morning.
Meanwhile over at the Jimmy Fund Clinic, Mike and I were on mega damage control. My kid decided that today was a good day to play nice in front of the psych doc’s and then show his true colors when the transplant NP came in. Good Times. I got kicked in the stomach, and she got whacked with flailing arms. This kid just absolutely cannot control himself sometimes. However, he sure knows how to shine it on when it’s time to be cute. It’s so frustrating. Medically he’s doing awesome. We are now on day 75 since he’s had his unrelated donor bone marrow transfusion, and the only two complications were the BK virus, and high blood pressure which caused something called PRES.
PRES resolved itself once we switched from Cyclosporine to Tacrolimus to prevent GVHD. I’m sorry if you don’t understand all of these medical terms, but I’m too tired to explain it all. Look it up. We had to repeat his MRI last week, and that’s how they know he had PRES because his inflammation in his temporal area has since gone away on it’s own. There is still a small bright white stripe in his Cerebellum, which means we have to repeat the MRI once again in about three months. Sedation sucks. I usually go back into the procedure rooms or the OR with him as they sedate him. Last week we had a dance party into the MRI room, and then he tried to escape so they quickly pushed propofol into his central line, and his eyes flipped up as he was knocked out right into my arms.
We do what we have to do. Like right now for example. I needed a break, and a good one. So I stepped away from our apartment here to write this blog. I find it therapeutic to write, knit, sing, and watch YouTube videos on whatever my latest obsession is. Which right now is knitting. Crocheting too, but that looks way harder. I just need more time to myself, so I try to cram blogging in whenever I can. When I’m not blogging, I’m probably trying to sleep, nursing my sweet baby boy, or explaining to my other son that what he’s doing is completely inappropriate.
Harrison James is now 3 months old! Actually he’s 3 months and one week old already. I can’t believe how fast he’s grown. He’s about to roll over any day and take over the world with his cuteness. It’s so nice to have his smile around to keep us happy. A lot of people ask me how I do what I do. A big part of it is Harrison, as he keeps me going. It’s so nice to have a baby to focus on. It takes away from all the free time some other transplant parents may possibly have. For me, free time is time to worry. I don’t have time to worry. I mean sure I worry a little bit, but now I just sound neurotic, and maybe I am. Slightly.
This is a tiny little piece of heaven. It’s all we have for the moment. It’s actually like a vacation. I’m totally not even kidding. This very chair that I’m sitting in is mine for this moment. This room is quiet, and my boy is upstairs. This is where I can come to think, pay bills, let Mr. H take a nap, or knit a hat. I wished I had started using it sooner. Sometimes parents need a time out too. I got mad, and I feel bad but my boy’s behavior is so off the wall ridiculous that I needed a time out or I was going to explode. When we got back from his appointment earlier he tried to throw a full water bottle at my head, knocked over wooden chairs, and began to mess the place up.
… And just like that, it was gone. All of my peace. The words I was going to type. Thoughts I wanted to share. He found me. He found my quiet place. There is nowhere to hide. Nowhere to run to. I am here, and he is with me. He is always with me, right up my you know what. Now Harrison is crying, and Chris needs to go take his meds. I accomplished one thing, being this blog post and an email to his doctors. Now I need to go nurse my baby, play with my son, and try to plan out another instance where I have some me time. Take care of yourself they say… If they only knew.
He was upstairs, and I was downstairs.