Addison's Upcoming Surgery

I keep telling myself that it's important to keep track of the details now because in a few months, these days will be a distant memory and we'll laugh as we have a hard time trying to remember. We can't get to that day fast enough.

As many of you know, Addison had an emergency surgery back in February of this year. He had a peritonsillar abscess (translation = severe throat infection) that was discovered in the emergency room. While the ER ran tests to determine the problem, they came across some kind of a mass and suggested we follow up on it after the infection was taken care of.

Not thinking too much about it, we visited with Addison's ENT, who, after completing additional imaging, sent us to a pediatric surgeon with CHOA.  The mass wasn't in Addison's throat, but in a tricker spot called the "anterior mediastinum", which is also home to your heart, main arteries, vessels, thymus and more.

We completed an MRI in April for the surgeon to get a better look and, hopefully, diagnose it. We learned that the mass was attached to the thymus, an immune system organ that actually shrinks over time as we age. It also appeared to have been there for some time, most likely since before he was born.

While the MRI could not confirm exactly what the mass was, the surgeon took a wait-and-see approach, suggesting we recheck again in 6 months. He wanted to see the mass either stay the same in size, or shrink.

In October, we took our second MRI. To our dismay, the mass grew in size by 25 percent, which doctors consider to be unusually fast. It also was starting to entrench on Addison's airway, meaning we now had to decide on a treatment plan.

Our surgeon suggested aspirating the mass (translation = withdraw fluid to test it), with the hope of deciphering a clear diagnosis. In mid-October, we went to Day Surgery so doctors could put a needle into the mass and pull fluid. Addison spent the night at CHOA for observation, remained in good spirits and was released the following day.

Unfortunately, the pathology did not give us any definite answers. Our surgeon recommended removing the mass via surgery and we put it on the books for Nov. 20.

Simultaneously, we reached out to other children's hospitals with centers of excellence for "lymphatic malformations," one of the possible types of masses that Addison may have. We received second opinions from experts at both Boston Children's Hospital and Children's Hospital of Pittsburgh. But after reviewing Addison's case, they both felt like the mass is not a lymphatic malformation (and as such, can not be treated, but must be removed). They also endorsed CHOA and its team, which has given us an even higher level of confidence in our surgeon's abilities.

So, what IS this mass? We'll have a better idea after it's removed and sent to pathology. Right now, we are focused on Friday, and hope our doctors can remove it via thoracoscopic surgery (i.e., minimally evasive, small incisions, using a camera, quicker recovery). If it's stubborn, they will rely on a sternotomy (translation = open-chest surgery). That is much more evasive, has higher risk, more recovery time and includes breaking the sternum.

Please keep Addison in your thoughts on Friday and let's have faith that he is in the best care possible and that the amazing doctors at CHOA will be able to successfully remove this growth in the simplest way possible.

In the meantime, Addison is keeping busy by writing his wish lists for his birthday and Christmas, learning to play basketball on his first sports team, playing cars and picking out his preferred bike helmet at the store (see below). He's a trooper, he's our hero and we know that in a few short months, this will just be another distant memory ... and we'll be laughing as we try to remember all of the details.