Cason’s initial ear pain started in March of 2015. He would complain that if his ear got hit, it hurt. Of course, being that it only hurt when it got hit, we didn’t think much about it. He’s a boys’ boy and is always roughhousing with brothers.
In May, on his face next to his left ear, he began to show signs of swelling. I called the pediatrician and he said that is a sign of an inner ear infection. After 7 days on an antibiotic and no change in the swelling, I called an ENT. I couldn’t get him in on the Friday I called, so they called in a stronger antibiotic and said they’d call back on Monday. When Monday rolled around, the swelling was worse and was now closer to his eye. They got him in the next day to see what was going on.
The ENT at Nationwide Children’s in Columbus ran test after test. The scoped his nose, checked his ears, and found nothing. They decided to do an ultrasound and they called the next day because they saw something, but they weren’t sure what it was. They scheduled a CT scan for Friday, June 5. The doctor said to pack a bag for a few nights because it was probably a cyst that will need draining and Cason would need to be monitored.
We went for his CT at 7am. They took us to the CT room where they had to put an IV in him while he was awake. He had to lie still while they ran the test, which he did pretty well, considering! When the test was all done, we went straight up to the clinic for the results. When the ENT came in, it wasn’t our usual doctor because he had called in sick. He then proceeded to ask if I had ever seen a CT scan, which I hadn’t. As soon as he pulled up the first picture, my heart dropped in my stomach and I felt like passing out. We have all seen enough pictures on hospital shows that we know what we’re looking at. I looked at him and I said, “Is it…?” Knowing what I was talking about, he said he wouldn’t know until we get in there and take it out. The pain that he was having in his ear was because the tumor had deteriorated the bone and was touching his dura. He explained that it was going to be a long day and that we could only go one step at a time. He wanted to admit Cason, do an MRI, then do the biopsy. He made phone calls to the head of Cardiology, Neurology, Oncology, and a friend at The James, which is an amazing cancer hospital in Columbus. Everyone was aware and on standby if he needed them.
I knew I couldn’t cry in front of Cason, I had to be strong. It was the hardest thing I had ever done. I walked into the hallway to make a phone call to my husband and the most religious people I knew. If anything, I knew he would need all the prayers he could get. Everything else the doctor said that day was a blur! I did find out while waiting for the MRI that Cason’s doctor was the chief ENT. It was like a blessing in disguise. After the biopsy, he told me that Cason had Langerhans Cell Histiocytosis. It would have to be confirmed by the pathologist, but he was 99.9% sure that’s what it was.
A few days later, he called and confirmed that it was LHC. He referred us to an oncologist at Children’s that specialized in the field. After days and days of research, I was more confused than anything. Some doctors say it’s cancer whereas others say it’s not. Regardless, Cason was going to be treated as a cancer patient and his disease is considered a rare disease that 4 in a million get.
While visiting the oncologist, he told us that Cason would go through 12 months of treatment. He wanted a port placed in Cason’s chest so that he didn’t have to be stuck every time he came in. While researching, I found that the leading hospital and doctors were in Texas and the other in Cincinnati. We decided that a second opinion would be a good idea. While waiting to get down to Cincinnati, the ENT called and was concerned that Cason’s tumor was growing rapidly and we needed to take care of it now. We saw the doctor in Cincinnati and he confirmed everything that the doctor in Columbus had said. Since Nationwide was closer, we decided just to stay there and get everything started. I called and they got him in the next day to have his port placed.
The doctor said the port would be placed in the center of Cason’s chest. I proceeded to tell Cason that he was going to be the real Ironman. That seemed to settle his fears, and ever since, it has made him realize that he’s strong that he thinks.
Chemo started one week later. He had to go every Tuesday for 6 weeks straight and had to take 28 days of steroids. On the sixth week, they did an MRI to see if it was working. Amazingly, the tumor had shrunk significantly! He now goes to chemo every three weeks and has five days worth of steroids. Cason has changed from all the medicines that he has been getting. He gained fifteen pounds and has a temper that I never saw before all of this. Most days, you’ll see he is a normal five year old. He has not let the tumor or this disease slow him down, not even for a second.
If you’d like to see pictures, you can check out his Facebook page at Cason Fight. Thank you for everything.