Well, I did it again, after our trip in October, I never took the time to post an update of how his procedure went, and somehow 6 months went by. (*update: when I wrote this...now its been 11months, sorry, I never published). I'm always so focused on him post-op, that I don't take myself away for an update, and once we get home, life just keeps going so fast, I can't seem to get around to it. Once things settle down, you all know my coping mechanism of avoidance, that also plays a role in keeping me from thinking about it or putting down my thoughts. But in gratitude for all of you who hold thought or prayer for Jacob, I owe you an apology, along with an update.
So rewind to November 2...we arrived at the hospital bright and early, as he was the first case of the day. We spent some time in pre-op, and Jacob was in great spirits. He and his brother kept each other entertained, Jake even did some dancing on the bed!
Before we knew it, it was time to roll back to the OR. They had a new fancy TV back there, which they could put a number of things for the kids to watch as they go to sleep. Upon being reminded that Jacob wants to be a diver when he grows up, and that is how we practice for anesthesia, they put a ocean scene up.
He slid over onto the OR table so bravely, and held my hand and watched the TV as he breathed into the mask like a diver. I was so proud of him and the courage he showed. I could tell he was nervous, but just did as instructed and we talked until he was asleep. I left him in their capable hands and found my way back to mom and Asa in the waiting room and settled in. His procedures are always long and involved, and this one was no different. We were kept updated throughout as usual, and by noon his doctor was out to see us. He was very pleased with how it went, and how stable the lesions were since the last treatment. This was the first time we have seen any stability from one treatment to the next. I spoke before that we were hoping to be hitting the "dormant phase" of later childhood, and this stability seemed to support that possibility. His doctor was so pleased, he hinted at maybe letting us skip the next treatment. We have been going to Boston for treatment every 6 months for years, but he said if it stays this stable, we may be able to skip the May treatment and go for a year. He said no promises, he still wants to see imaging in 6 months (which we can do at home as usual), and that he doesn't feel comfortable going longer than a year for sure without seeing him, but at least there is a possibility of Jacob getting a break in treatments. We are so excited about this possibility; though we are more than willing to go as often as necessary to keep him healthy, a break would be wonderful for him. So this was great news!
Before long, we were taken to PACU to wait for him to wake up. That is always the longest wait for me, putting my nurse mind over my mama heart to not let myself wake him up. He's so beautiful though, just watching him sleep.
He soon woke up, calmly and relatively comfortably...all the thanks in the world to the BCH anesthesia team to figuring out the perfect cocktail for my guy! So glad they cracked this code and we enjoyed a 2nd peaceful wake up in a row. Hopefully gone are the days of those difficult anesthesia wakeups. He was still having some pain as is expected but again amazed me with his bravery. I had a moment, as this was the first trip he hasn't wanted me to climb in bed and hold him afterwards, but instead wanted his big brother. But I couldn't be too sad as they looked so sweet together, I couldn't hardly look away.
It has been so special having Asa on this trip. Jacob's siblings have always been such a comfort to him, and this trip was no less so. I was so glad Asa was able to be there for Jake, and it warmed my heart to see how protective and caring Asa was of Jacob. These new teenage years we are navigating have been filled with ups and downs, but to see Asa's care for his brother...I could not have been prouder of him.
Jacob also kept his streak alive and did well enough post-operatively for us to go home that evening! I was so excited that he was doing so well for them to let him go. We made our way back to the house and rested for the evening. We stayed pretty low key until after lunch the next day, by which time Jacob was feeling well and both boys were feeling restless. We decided to venture out and visit somewhere new we'd never explored before. We headed over to the Harvard campus, which is always beautiful, but with the leaves turning, was especially so.
We then went to the Harvard Museum of Natural History. We'd never been there before. It was really cool, and ended up being a favorite of both boys this trip. They loved all of the animals and bugs, but surprisingly they enjoyed the rock formations room the most. It was really cool.
We kept it a short outing, looking out not to let Jacob overdo it, and headed back in for the night. The next day, the boys wanted to go to the New England Aquarium, one of Jacob's favorite places in Boston. The hospital gave us tickets which was nice, so away we went. We caught the penguin feeding which is always fun, and had a nice day.
We left Boston the next afternoon, and had an uneventful trip home. Jacob was back to school within a day or so, and life returned to normal. I look back on this trip now months later, and what stands out to me, was the beauty of my sons' relationship with each other. Being 6 years apart, often they fight and annoy each other, but during this time, all I could see is love. So many times as a parent, I question myself...are we doing ok, are we raising them right? Seeing the love and care they have for each other makes me think maybe so. I watch Asa and see these glimpses now of who he is becoming, and the responsibility I feel for him to be a good man is so heavy. But he is such a good kid, and has such a kind soul. Seeing him this week with his little brother was something I'll bring to mind whenever I'm blinded by the difficulties of raising a teenager. And seeing the love between them shining through the hurt and the challenges Jacob faces is a light in the darkness. I couldn't be prouder or love them more.
Thank you all again for thinking of us and praying for Jacob. We really had a great trip. I'm thankful for my mom for stepping in and going with us this round since David couldn't. She's wonderful with the boys, and such a support for me. Glad to round out Boston trip #8 in the books.
Again, I'm sorry for the delay in the update...I'll try to do better, but concede, I probably won't. I half keep this record for myself, to remember, process my feelings, and to keep all the medical details straight (especially in those early years). Just know if I'm quiet, were just busy over here living our lives!
