Nick's Journey with Stage 4 Tongue Cancer
In April of 2016, Nick began experiencing pain on the right side of his head in the area of the ear. After visits to his primary care, and our local ENT specialist, it was suspected that the hole in Nick's ear canal was the problem. In early June 2016, a tube was inserted into the right ear to assist with the collapsed ear canal, and the hole that was located. By mid June, Nick knew that the tube had not fixed the issue and he was referred to a neurologist for a possible pinched nerve. After many visits to the neurologist, Nick was told he had sleep apnea, believed to be causing him the pain due to lack of sleep. By the end of June, his tongue had began to swell, but no protrusion. On July 1st, Nick had a "sneezing fit" and ended up getting the right side of his tongue embedded into his teeth. After we made it into the ER, he was really cold and his teeth chattered away, and it tore itself free. At that time I had suspected that it was cancer due to my research of the white blotches and black under his tongue that had began to appear (and quite frankly, smelled horrible). Most of the suggestions and pictures that looked just like his were cancerous cells. Nicholas had 10 out of 12 symptoms at that time. I asked the ER doctor to perform blood work in hopes it would rule out cancer. Doctor performed such, and he stated there was no cancer. Yay! (or so we thought!). On July 10th, Nick's primary doctor noticed a small abscess or tumor that was now protruding through the top of his tongue in the middle of the tongue. We were rushed to the ENT who said to finish the antibiotic and we would see him on July 25. On July 19th, he finished the antibiotic and by July 21st, his tongue was roughly 2-3x it's normal size. We called his ENT and he saw us the same day. It was decided it was best to do a biopsy and the earliest available date was July 29. In the mixture of the turmoil, Nick had stopped being able to eat regular foods. His ENT suggested he eat baby food, or high protein shakes (Ensure, Boost, PremierProtein, etc). In the midst he went from 203lbs down to 143 at that time. On July 29th, my world began to crumble. After Nick's surgery on July 29th, he could no longer talk due to constant bleeding and the now very large tumor on his tongue. His ENT was 90% sure it was cancer. On August 3rd, we found out.... it was CANCER. On August 8th, we made our first trip the Oncologist at Lourdes in Binghamton. They transferred our case to Syracuse as Lourdes does not treat Head/Neck cancer. On August 9th, we met with the ENT in Syracuse who stated that he would refer us to the Upstate Cancer Center in Syracuse. We began numerous appointments with Chemo & Radiation doctors, as well as with the ENT in Syracuse for the following week. They decided on August 17th to admit Nicholas into the hospital and insert a G-Tube (feeding tube). He ended up not being able to have the sedative, and had to perform a general anesthesia, however we were told he may have complications from such and need to be intubated. Of course with our streak of bad luck, he ended up having to be intubated during the surgery on August 18th and began the 24 hour period of not being able to eat/drink period. They decided to start his first round of Induction Chemo on August 19th. During the first round of chemo, he still could not talk between having been intubated, and the largeness of his tongue. On August 24th, he completed his first round of Induction Chemo. Doctor appointments between Round 1 and Round 2 were often, just to continue to make sure he was responding well. Round 2 began on September 9th. By that date, he was able to talk, but still was only really consuming his feedings through his G-Tube. By the end of Round 2 of Induction, which ended September 14th, he was able to finally eat foods orally, as long as they were soft and small pieces. Between Round 2 and Round 3, his doctor wanted to re-evaluate to see if Nicholas was a candidate for surgery. Unfortunately, he was not, and we began Round 3 of Induction on September 29th and it ended on October 4th. After Round 3, Nick was able to secure a trip to the Cancer Treatment Center of America who will work alongside Upstate Cancer Center in the treatment plan for Nick. We are scheduled to depart on October 16th. He began his 4th round of Induction Chemo on October 25th and ended on October 31st. He received Radiation and Chemo treatments at Upstate Cancer Center Monday-Friday from November 17th to January 5th. He has had to have a pump connected to him to give him a continuous small dose of feeding which subsided most of his nausea. As of December 17th, he no longer could handle anything orally except ice water. His tongue was super, super raw and everything except for the ice water would make his tongue burn. He finished Radiation & Chemotherapy on January 5, 2017. Checks ups from January 5th-March 2nd went well. He had an infection in his port which they opted to remove until a later date. On March 3, Nicholas began bleeding extremely heavy from his mouth. We rushed him to our local emergency room where they were still unable to control the bleeding. Five hours after arriving at our local hospital, they transported him via ambulance in snow & ice covered roads to Upstate University in Syracuse (where his Cancer is treated). Within an hour of arriving, Upstate was able to stop the bleeding and he was given 2 units of blood due to the severe loss of blood. He was admitted into the Oncology floor for observation and trying to figure out what was bleeding from his mouth. March 22/23rd, Nicholas' feeding tube came out and he was rushed to the hospital. Three more trips were needed before the feeding tube would finally stay secure for Nick. On March 31, Nicholas and Christina received the news that Nicholas' cancer was still in his body; minimal cancer activity in the tongue, however a large bit of cancer activity in the right neck lymph nodes. On April 5, Nicholas had a biopsy of the lymph nodes to see what sort of information they could gather for this type of cancer he has. April 9th, Nicholas was rushed to the hospital again with a bleeding of the mouth. This time the bleeding was much more severe after arriving at our local ER for slight bleeding. Nicholas began having large clots in his mouth, causing him to gag. Unfortunately the suction pulled off the clot on the wound and opened up the bleeding to a much larger scale than before. He was rushed to Syracuse once again. He had to receive another two units of blood at the time. His ENT doctors performed a "coil" which prevents blood from entering the tumor - it is believed that on the right side of the tongue, the tumor either ruptured a blood vessel, or it shrunk enough to expose a blood vessel. Doctors spoke to Nicholas again about the idea of a tracheostomy as Nicholas was having issues breathing and his airway was compromised during the most recent oral bleeding. Nicholas finally agreed. On April 12, they were successful with the tracheostomy. As of April 13th, He remains in the ICU at Upstate at this time.