Oct 16, 2016 Latest post:
Apr 26, 2017
Our Journey began this summer, June 2016. The school year had ended and St. Johnn was easing into his summer break. St. Johnn was congested (sinuses) and went to the doctors. He was given some antibiotics and a breathing treatment. He began to feel a little better and started to enjoy his summer break. As the weeks went on, his symptoms got worse. He had trouble breathing, his voice got raspy and wasn't able to lay down and sleep. On August 14, St. Johnn went to Howard County General Hospital ER to get some relief. During this whole time, he was told to take cold and sinus medication, which did not help. After being seen by the ER doctors, the doctors were more concerned by a mass on the right side of his neck than his nasal congestion. He had a CT scan, which showed a large mass on the right side of his neck and a smaller one on the left side. We were able to feel the mass on the right side but the left side was so small, we were not able to feel it. The ER doctors were going to transfer him to Johns Hopkins that evening but decided to wait and have him follow up with a Neck Specialist on Monday. On August 15, St. Johnn and I met with a Neck Specialist at Johns Hopkins. It took several attempts times but the doctor was able to complete an upper endoscopy through the nose. The doctor was able to see that he has swollen tonsils and enlarged adenoids. The doctor told us that the mass could be a Cyst, Thyroid cancer, or Head/Neck cancer. The doctor ordered for an ultra sound and biopsy of both masses. As we waited for the appointments to be scheduled, St. Johnn started his school year. St. Johnn had an aspirate biopsy on both neck masses. We waited 3 weeks to get the results back, which showed A Typical cells. They said the results could have been from the cells on his skin so an additional biopsy was ordered. He had several ultra sounds to monitor the growth of the mass. St. Johnn's case was then transferred to an ENT/Oncology doctor. The ENT doctor ordered another biopsy, which would take a larger sample from the mass to further determine the diagnosis. The ENT doctor looked in his nose and could see all of the mucus built up in his nose due to the mass pressing on his soft pallet, pushing everything up so his sinuses do not drain properly. St. Johnn completed the core biopsy on September 23. Two weeks later our suspicions were confirmed. St. Johnn has been diagnosed with Non-Hodgkin's Lymphoma. St. Johnn and I met with Oncology on October 14. The Oncology doctors said St. Johnn should start to feel some relief after the first round of Chemo. St. Johnn still can not breath our of his nose, constantly blowing his nose and continues to sleep on the couch. The Oncology team is very nice and answered all of our questions. Due to the computer system being down, they were not able to officially confirm the stage of his cancer but were certain it was in the early stages (Stage 1 or 2). St. Johnn will have a Echo cardiogram to make sure his heart is strong enough for the chemo, a Bone Marrow Biopsy to make sure the cancer has not spread to the bone marrow and a PET scan to see if there are any additional cancer in his body. St. Johnn will complete these tests this week and then start chemo in a week or two after the tests are completed. St. Johnn will have Chemo once every 3 weeks, for a total of 4 chemo treatments. If the bone marrow biopsy comes back positive, he will have 2 additional chemo treatments. Right now there is no talk of surgery or radiation. St. Johnn plans to work as much as he can.
St. Johnn remains very positive and has a lot of humor through all of this. We appreciate all of the love and support from all of our family and friends. I will continue to keep this page updated through out the process. It's hard for St. Johnn to talk on the phone so feel free to send a text message to him or message him on Facebook.