Atticus had his first round of interstitial laser treatment on his tongue on January 29, 2014. We arrived in Winston-Salem the night before and got settled in at the Ronald McDonald House across the street from Wake Forest Baptist Medical Center. Our drive from Charlotte to Winston-Salem was not typical for North Carolina – we actually had snow and now I understand why everyone in NC freaks out at even the mention of snow – because they don’t really treat the roads. They just don’t have the capacity to treat all the roads because snow is such a rare occurrence. The highways were pretty bad, but we were careful, and made it safe and sound.
The following day we arrived at the hospital at 10 am. The surgery was supposed to take place at 11 am, but they didn’t end up taking Atticus back to surgery until around 1 pm. Atticus was a trooper though. He hadn’t had anything to eat or drink for well over 12 hours, but we kept him busy enough in the waiting room and I don’t think he even noticed the hunger or thirst. Because Atticus is an only child, and doesn’t go to day care, we don’t get to see him interact with other kids a lot. There was a little girl (maybe 3 or 4) in the waiting room playing with these cool little hamster things that go when you press a button on their back. Conveniently, she had two and when Atticus expressed interest, she let him play with one. At one point, she looked at Atticus’ mouth confusedly and asked, “what happened to that baby’s mouth?”. I answered, “he was born that way.” She said, “Oh”, and went on playing. Every time Atticus would walk away, the little girl would say, “come back, baby.” It was really cute.
After a couple hours in the waiting room, Atticus was finally called and things moved quickly after that. Usually we wait for a while in the surgical holding area, but this time it was like bing, bang, boom and he was whisked away. This time, they gave him a little something to make him relaxed before taking him back so that he wouldn’t have separation anxiety.
As he gets older and we get more used to these treatments, it’s not so much the worry about him having surgery – it’s seeing him sad, scared, or in pain that really gets to me. I was glad to be spared having to see him scared and screaming for me and Brian as they took him back to surgery.
This procedure seemed to take a bit longer than previous laser treatments, mostly because of the addition of the interstitial lasering of his tongue. After an hour or so, Atticus’ ENT came out to the waiting room and told us that the interstitial treatment had gone well – nothing unexpected. He explained it to us as inserting a large and very wide catheter deep into Atticus’ tongue and then feeding the fiber through the catheter. Then as he pulls the fiber out, he pulses it every 5mm or so. So, even though there are only two incisions into the tongue where the catheter was placed, there are multiple spots inside the tongue that were lasered. As the doctor described the procedure, I said how fascinating the whole thing is from a medical standpoint. The doctor answered “Yes, it is fascinating…when it’s not your kid.” He is right about that. As I learn more about LM, it is fascinating what doctors can do and how far the treatment has come, but no one would wish any of this on their own kid. And, I am always reminded of how far we still have to go and how some kids and adults are still really struggling, despite advances in treatment.
Pain and swelling so far have been the biggest obstacles. Atticus was able to eat a few hours after surgery, so they felt comfortable sending him home the next day. We were told that swelling would peak at 72 hours and then decrease from there. We are currently almost at 48 hours out and the poor little guy’s tongue and lip are very swollen. It is amazing that he can eat and drink through all the swelling and the pain.
Everyone is curious to see what the results of this treatment are going to be. Right now, it’s a waiting game. It could take a month or so before we really see what effect this treatment might have on the size of his tongue. Luckily, I learned early on, even while pregnant to be OK with not having immediate answers. I’ve grown patient and hopeful. I take things one step at a time and am grateful for the positive things that are happening today, right now. Like, the fact that Atticus is eating and drinking and that his pain can be controlled through medicine. I’m grateful that there are treatment options out there for him. I’m grateful that he is healthy and strong and able to withstand all of the surgeries that he is going to have to have in his life. But, as I’ve said before, this is part of his journey in life. A journey that may come with its obstacles, but one that will teach him the strength, pride, and resilience that will take him far in life.
The Grateful Mother 
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