In February of 2008, I took my then 17 month old son Leyton to the pediatrician’s office for a cough. I normally wouldn’t have been too concerned about it, but he was supposed to have tubes put in his ears the following day. I didn’t want him to have a procedure done if he wasn’t perfectly healthy. The doctor tested him for the flu and RSV, but both were negative so she did a chest x-ray. Shockingly, the x-ray showed that his heart was as big as his chest.
We immediately went to the hospital where Cardiologists had already been informed of his condition. They found that the x-ray was actually showing fluid all around his heart, 400 ml to be exact. The doctors were shocked. This is usually either a complication of surgery, or caused by a virus or bacteria, but Leyton hadn’t had any surgeries and was perfectly healthy other than a few ear infections. They told us that they would drain it, and we could go home in a few days. However, the fluid production did not stop.
They tested him for all kinds of things, but results all came back good. He didn’t have virus or a bacterial infection. Weeks went by while they tried to find a reason for this non-stop fluid production. It seemed like we had every team of doctors in the hospital trying to find something wrong with Leyton. They finally decided to perform a surgery that isn’t done very often, but they thought would most likely work. Since it’s such a very painful surgery and there was a chance that it wouldn’t work, they tried to exhaust all other options first. Well, after the surgery, the fluid actually increased. We soon accepted the fact that the surgery didn’t work. We were devastated because we didn’t know why this fluid wouldn’t stop or what to do about it.
Week four in the hospital, our surgeon started doing more in depth research. He looked at one of Leyton’s original x-rays and saw a small lesion on his left humerus. He decided to do a scan to see if there were anymore. He discovered that Leyton’s spleen had holes all in it, which we later learned are cysts. This discovery led to a full body skeletal bone scan which showed two more lesions on his upper femurs. With all of this information, Leyton’s surgeon called around the country to other doctors to see if these things even had anything to do with the fluid issues. He got a hit from a doctor that had actually seen all of these symptoms together, and it had been diagnosed as lymphangiomatosis. With this new information they made the decision to biopsy one of the affected bones and his spleen. This is what confirmed his final diagnosis – lymphangiomatosis.
We were glad to have a diagnosis until we researched it and found that it’s so rare and that most of the information that we read was not very encouraging. Plus most of the doctors hadn’t even ever heard of the disease…..that was the scariest part. We cried for days before we could get our heads together and start doing productive research for Leyton. We found that a group of doctors in Boston knew more about this disease than most other doctors, so we pushed to get his case reviewed by them. In the meantime, our surgeon performed an experimental surgery to deal with the fluid since we knew that it wasn’t just going to stop on its own.
After six weeks in the hospital, we went home to celebrate Easter with our other children. Four days later, we went to Boston to see the doctors there. Along with our Hematologist/Oncologist here in Little Rock, they came up with a treatment plan. Leyton takes a weekly dose of chemo in hopes that it will stop the progression of this awful disease. He seems to be doing fantastic so far. The experimental surgery is working and he’s handling the chemo like a champ. After six months of treatment, we will have further testing done to see if it’s getting better.
This disease has changed our lives forever, but we will fight it and do everything we can to make sure that our son gets the best treatment possible. He’s the sweetest little boy and we feel so blessed to have him in our lives. We just try to take things a day at a time and make sure that he feels so very loved along the way.