Casonʼs initial ear pair started in March of 2015. He would complain that if it got hit, it
hurt. Of course, being that it only hurt when it got hit, we didnʼt think much about it.
Heʼs a boys boy, and is always rough housing with his 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 typically an inner ear infection. After 7 days on an antibiotic and no change in the swelling, I called an ENT. I couldnʼt get him in on the Friday I called, so they called in a stronger antibiotic, and said theyʼd 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 Childrenʼs in Columbus ran test after test. They scoped his nose, checked his ears, and found nothing. They decided to do an ultrasound, they called the next day because they saw something, but werenʼt sure what. They scheduled a CT scan for Friday June, 5. The doctor said pack a bag for a couple of nights, itʼs probably a cyst that will need drained, and heʼd have 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 lay 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 wasnʼt our usual doctor, he had called in sick. He then proceeded to ask if I had ever seen a CT, which I hadnʼt. As soon as he pulled up the first picture, my heart dropped to my stomach, and I felt like passing out. We have all seen enough pictures on hospital shows that we know what we are looking at. I looked at him and asked, “ is it.....?” knowing what I was talking about, he said we wonʼt know until we get in there and take it out. The pain 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 we can only do one step at a time. He wanted to admit him, do an MRI, then do the biopsy. He made phone calls to the head of Cardio, Neuro, Oncology and a friend at The James, which is an amazing cancer hospital in Columbus, so that they were all aware and were on standby if he needed them.
I knew I couldnʼt 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 phone calls 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 his doctor was the chief ENT. It was like a blessing in disguise. After the biopsy, he told me that he had Langerhans Cell Histiocytosis. It would have to be confirmed by the pathologist, but he was 99.9% sure thatʼs what it was.
A few days later he called and confirmed it was LCH. He referred us to an Oncologist at Childrenʼs that specialized in the field. After days and days of research I was more confused than anything. Some doctors say itʼs cancer, where others say itʼs not.
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 typically an inner ear infection. After 7 days on an antibiotic and no change in the swelling, I called an ENT. I couldnʼt get him in on the Friday I called, so they called in a stronger antibiotic, and said theyʼd 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 Childrenʼs in Columbus ran test after test. They scoped his nose, checked his ears, and found nothing. They decided to do an ultrasound, they called the next day because they saw something, but werenʼt sure what. They scheduled a CT scan for Friday June, 5. The doctor said pack a bag for a couple of nights, itʼs probably a cyst that will need drained, and heʼd have 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 lay 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 wasnʼt our usual doctor, he had called in sick. He then proceeded to ask if I had ever seen a CT, which I hadnʼt. As soon as he pulled up the first picture, my heart dropped to my stomach, and I felt like passing out. We have all seen enough pictures on hospital shows that we know what we are looking at. I looked at him and asked, “ is it.....?” knowing what I was talking about, he said we wonʼt know until we get in there and take it out. The pain 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 we can only do one step at a time. He wanted to admit him, do an MRI, then do the biopsy. He made phone calls to the head of Cardio, Neuro, Oncology and a friend at The James, which is an amazing cancer hospital in Columbus, so that they were all aware and were on standby if he needed them.
I knew I couldnʼt 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 phone calls 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 his doctor was the chief ENT. It was like a blessing in disguise. After the biopsy, he told me that he had Langerhans Cell Histiocytosis. It would have to be confirmed by the pathologist, but he was 99.9% sure thatʼs what it was.
A few days later he called and confirmed it was LCH. He referred us to an Oncologist at Childrenʼs that specialized in the field. After days and days of research I was more confused than anything. Some doctors say itʼs cancer, where others say itʼs not.
Regardless, Cason was going to be treated as a cancer patient, and his disease is
considered a rare disease that 4 out of a million get.
Once visiting the Oncologist, he told us that he wanted a port placed in his chest so that he didnʼt have to be stuck every time he came in, and that he would go through 12 months of treatment. 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 in down in Cincinnati, the ENT called and was concerned that this tumor was rapidly growing, and we needed to take care of it now. We saw the doctor in Cincinnati and he confirmed everything the doctor in Columbus had said. Since Nationwide was closer, we decided to just stay there and have 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 his chest. I proceeded to tell Cason he was going to be the real Ironman. That seemed to settle his fears, and has ever since made him realize he is stronger than 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, and amazingly it had shrunk significantly. He nows goes to chemo every 3 weeks, and has 5 days worth of steroids. Cason has changed from the medicines he has been getting. He has gained 15 pounds and has a temper I never saw before all of this. Most days, youʼll see he is a normal 5 year old. He has not let the tumor or this disease slow him down, not even for a second.
Cason now, 4 years later is Cancer free. He has lost all of the weight from chemo, and is active as all kids his age. We take him to get blood work every six months, and scans once a year to make sure the cancer hasn't returned. We hold our breaths and pray that everything is clear, but the fear of hearing those words again are still there. You realize life is short. Love and hug on your babies, go on adventures, and live every day to it's fullest because you never know what might happen tomorrow.
Once visiting the Oncologist, he told us that he wanted a port placed in his chest so that he didnʼt have to be stuck every time he came in, and that he would go through 12 months of treatment. 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 in down in Cincinnati, the ENT called and was concerned that this tumor was rapidly growing, and we needed to take care of it now. We saw the doctor in Cincinnati and he confirmed everything the doctor in Columbus had said. Since Nationwide was closer, we decided to just stay there and have 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 his chest. I proceeded to tell Cason he was going to be the real Ironman. That seemed to settle his fears, and has ever since made him realize he is stronger than 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, and amazingly it had shrunk significantly. He nows goes to chemo every 3 weeks, and has 5 days worth of steroids. Cason has changed from the medicines he has been getting. He has gained 15 pounds and has a temper I never saw before all of this. Most days, youʼll see he is a normal 5 year old. He has not let the tumor or this disease slow him down, not even for a second.
Cason now, 4 years later is Cancer free. He has lost all of the weight from chemo, and is active as all kids his age. We take him to get blood work every six months, and scans once a year to make sure the cancer hasn't returned. We hold our breaths and pray that everything is clear, but the fear of hearing those words again are still there. You realize life is short. Love and hug on your babies, go on adventures, and live every day to it's fullest because you never know what might happen tomorrow.
