After a long Day 1, and crashing back at our hotel, we awoke on Day 2 ready to do something fun in the morning. We still had the upcoming afternoon appointment with Buster's neurosurgeon in the back of our minds, but we also wanted to take Buster out and forget about the actual reason for our trip to Boston--his yearly followup.
The hotel we have always stayed in has breakfast included in the room rate, and you would have thought Buster was there JUST for the spread. He absolutely LOVES this hotel breakfast. There are various cereals (hot choices are Froot Loops, Frosted Flakes), Belgian waffles, eggs, bagels, pastries, oatmeal, juices, coffee, tea, etc. We have alllllll of these things at home, but for whatever reason, Buster's favorite part about staying in a hotel is the "free" food. With Covid restrictions this year the look and feel of the whole place was a bit different, but it didn't phase him. His breakfast on Day 2? Frosted Flakes. He doesn't like them at home, but here? Go figure. He is the pickiest eater out of our three kiddos, so I'll take his eating anything as a win, and this was no exception.
We then headed over to the Prudential Center to shop around. Every other year we have traveled to Boston, Buster has visited Santa there, and he is the best Santa going! His beard is real, the setup is classy and fun, and the nostalgia for us is intense because right after we left the hospital when Buster had his brain surgery, this is the Santa Claus we met. We still have the pictures (pricey but worth it) of his first visit there and it has become a tradition to go back to the same place. Unfortunately, Santa wasn't around this year---only on Zoom. Buster was disappointed, and I will say that the Prudential Center didn't have the same gleam that it usually does, at least for us, because of the missing Father Christmas.
We window shopped a little but honestly, Buster was pretty cranky. I'm not sure what it was this trip but he was more difficult, emotionally. I knew he was tired from getting up so early the day before and he stayed up with his Legos the previous night as well, but I still wasn't expecting it. He had been so excited about our trip and he just seemed...irritable. B and I tried to validate his feelings, we tried ignoring the whining, we explained to him what we were doing and for how long we would be walking around, and all of the things parenting books and blogs tell me to do. But still, it was hard. Buster is a kid who feels things deeply. So when he's happy, he's happy, and when he's in a sad or angry mood, it's major. At the Prudential Center we usually grab something for lunch at Eataly. Have you been? It's a giant Italian marketplace of sorts, with delicious food you can both eat there or buy and bring home to prepare a meal. Lucky locals can grocery shop there for fresh produce, homemade pastas, Italian meats, and pastries. We passed by pistachio crusted canoli, freshly caught seafood, steaming soups, pizza stations, a wine shop---what a dream! It's such a cool, urban way to shop and eat and we love going there. Our drooling over the incredible offerings was only interrupted by Buster's claims that we were "ruining his life!" The animated, bustling atmosphere was punctured with cries and complaints. Not exactly the morning we were hoping for, but I can't say I blame Buster. He's 6 (and 3/4, if you ask him), and sometimes my expectations of him can be out of whack. I hardly imagine I would have liked browsing with my parents at that age, and I can definitely use a reality check every once in a while.
So, we pushed on, because Buster wanted to do something HE wanted to do: go to the Nike store. I don't know why I'm surprised, but this kid loves fashion. He particularly likes shoe shopping, and it's actually kind of hilarious. He would buy a new pair of shoes for every occasion if he could. I see credit card debt in his future ;) He tried on a pair of shoes (he wants something "LeBorn" James, as he says), and we took pictures for his wish list. I don't remember where I saw that piece of advice, but it was a good one: when shopping with kids who constantly ask for this and that, have them (or you) take a picture of it and add it to their wish list. It has saved me countless shopping meltdowns, both from the kiddos and from me.
At this point, we were just trying to kill time before our neurosurgeon appointment, but we had to get moving out to the hospital. We had walked the mile to the Prudential Center, so we took the T back towards the hospital. Buster complained the entire way, and we knew he was hangry---we saw a beacon of light and headed to McDonald's. Sigh. Nothing gets in his tummy faster than a Happy Meal, and he ate his entire lunch. And guess what? He was an angel after that! Even with the appointment upcoming, he was cheerful and energetic. I swear, sometimes I think I have this parenting thing figured out, and then days like this just completely throw me for a loop.
Before we ascended to the neurosurgeon's office, I asked B how he was feeling about the appointment, and he said, "I'm trying not to think about it." That pretty much sums up how I had been feeling, too. As I mentioned in this previous post, it's a weird gray area for me, these appointments. I want to be hopeful, but I'm too afraid. But I also don't want to assume the worst because it's no way to live. We checked in and waited in the clinic room. The neurosurgeon's nurse came in first, and she gave Buster a quick exam. He had to squeeze her hands, kick his legs and follow her hand with his eyes. She gave him a quiet, "Ok." And then said she'd be back with the neurosurgeon. I tried not to wonder whether he "passed" her exam.
I haven't mentioned the neurosurgeon's name on the blog, and I'm not really sure why. I know I'm writing this so people can learn from our experience, but I guess I wanted to keep some things private, for Buster's sake. It's why I don't use his real name, or ours. I am not trying to hide anything but I am also aware of the fact that this blog is not Buster's choice, it is mine, and it could impact his life. But as I think about our Boston trip, I am so grateful for the level of care Buster has received at Boston Children's, and his neurosurgeon is the largest part of that team; I want others to know his name so that if someone else is in need of a top-notch neurosurgeon, they could find him. His name is Dr. Edward Smith. He is, and I say this with no exaggeration, the absolute best doctor for Buster. He is kind, funny, engaging and compassionate. He explains Buster's incredibly complicated disease and the intricate procedures Buster received with ease and clarity. During our search for a neurosurgeon in 2018, B had to Google the procedure one neurosurgeon told us about because that doctor couldn't explain it well enough for us to grasp. I haven't even mentioned Dr. Smith's intelligence because I think it goes without saying that he is brilliant. He's a Moyamoya expert, Harvard Medical School professor, and pediatric brain surgeon. He probably has a giant list of accolades that I don't even know about. Dr. Smith is phenomenal. Period.
As soon as Dr. Smith entered the room, he said, "Just so you're not waiting and wondering, Buster's MRI looks great!" I let out a breath. I should have been relieved right then and there, but one thing I've learned throughout these last few years is that just when I think everything is "great," something else can come into play and blow out the flame of contentment. We said, "Ok..." And waited. Dr. Smith said that Buster's brain "looks perfect." QUOTE. What?! Amazing! The Moyamoya has not spread to the other side of his brain, and he hasn't had any new strokes! Because strokes can come in different forms and intensities, we never know without a doubt whether Buster has had any between his MRIs. Some people have small strokes called transient ischemic attacks (TIAs), that are not even noticeable except on an MRI, for example. The fact that his scans were clear of strokes is a big, big win.
Dr. Smith then showed us Buster's scan from a few days before his 2018 brain surgery compared to his scan from the previous day, and let me tell you, the human body is a wonder. The scan from a few days before his surgery shows that half of Buster's brain had hardly any blood vessels that were supplying blood to his brain. The scan from the day before our appointment shows both sides of his head, lit up by blood-supplying vessels, grown from his surgical intervention. Dr. Smith said the new vessels that grew from 2018 were keeping up with Buster's body's/brain's growth and providing the required amount of blood and oxygen, and the vessels will last the rest of his life. We could not have received a better report---I can't even think of something more positive he could have told us. All fantastic news. He said they will always keep checking Buster's brain, just in case, since the indirect bypass is not a cure for Moyamoya, but that the further we get out from his surgery the less likely it is that the disease will spread to the other half of his brain.
After Dr. Smith left the room and Buster was ready to go, I started to cry. It was a release, even though I can't accurately tell you how I felt in the moment. I was relieved, both to have the appointment done and at the news. I was elated, and grateful, and also sad that we have to go to these appointments at all. Buster was halfway out the door before he realized that I was covering my face with my hands, and that B was hugging me. He came back in and quietly asked, "Are you happy?" And all I could do was nod. It occurred to me that he doesn't entirely understand all of this. At Boston Children's suggestion, we had explained the surgery to him before he had it, and over the years we've talked a lot about "the owie in his brain," and how he has to drink about 40 oz of liquid a day to stay hydrated and to prevent further strokes, and how his "everyday medicine" (half a baby aspirin) is important to keep the blood moving in his brain. But I realized that he probably doesn't understand the seriousness of his disease, or the emotional impact this has on us as parents. And it should stay that way. It is important he knows as much about his health as he can handle---we will handle the rest---but he may not "get" why I am sometimes brought to tears after a doctor visit. Or why I'm pushing him to drink more water at dinner, or why I tell him he can never play football (doctor's orders), or why I can be overcome with emotion while watching him at gymnastics wondering how much longer he'll be able to keep up with his peers before they outrun, outlift, outlast him. It never ends, the worry, and all parents know this. But children can't possibly know this level of love until they become parents themselves one day.
I thought I would have this recap up so much sooner, but it has been a lot to process. My mother asked me yesterday how I was feeling about the appointment and the great report from Dr. Smith, and I didn't have a very good answer for her. I am obviously happy, relieved, grateful, all of those things...but I'm also a little numb. I'm not sure why. Maybe because I've been burned before, but I think it's more that I'm still thinking about it all: the amazement at the power of the human brain to grow new blood vessels for itself. The power of surgical intervention. The surreal report that all is "perfect." I'd like to float in this positive news bubble for a while and see how that feels.
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