Our Cancer Journey

Our Cancer Journey 

By Shauna Young

March 24, 2006 started out like any other day for our family. I got the two oldest (who were 10 and 11 at the time) up for school and everything was normal. Spent the day with my husband and the two youngest while they were at school we went to the park and had a great day. Little did we know that everything in our lives were about to change!! The boys came home from school and our oldest went inside did homework and ran out the door to go play. However, our 10 year old was walking slow, not being himself, and complained of a headache. So I gave him some medicine and let him take a nap. When he got up we had his favorite dinner, but he didn’t eat much and still complained about his head hurting. I had figured his sinus infection had come back with a vengeance. So I kneeled down in front of him….looked up at him and noticed this huge lump in his neck. I was determined to find out what this was without telling him what I was seeing. I played 20 questions but every answer came back as “no”. I showed my husband what I was seeing and we decided to watch our son overnight.

I was hoping that this would disappear and everything would be fine. I didn’t get much sleep that night keeping a close eye on all my kids. I woke the boys up for school and unfortunately the lump was still there. So I got my oldest son ready for school and sent our 10 year old back to bed. With the phone in my hand at the bus stop I was calling their doctor’s office and explaining what I was seeing. Luckily they still had appointments still available that morning. I got there early and the nurse at the desk was shocked at what she saw. It didn’t take long before we were called back. Our favorite nurse greeted us at the door ushering us back quickly. Within about five minutes our pediatrician came through the door and played 20 questions with my son and I both. Immediately he ordered blood work and a chest x-ray. While my son went to pick out his stickers and prize for being so good I stopped the doctor. I wanted an idea of what we were looking at….with a serious face he said the best case was an infection of some kind and worse case we were looking at some sort of cancer. My heart dropped and I got weak in the knees!

So downstairs we went and ALL of our paperwork was marked in capital letter with the word STAT!! We did the bloodwork and then the chest x-ray, but the x-ray she did twice and at first I didn’t understand why. We were then sent home to wait for them to call us with the results. My son laid down on the couch and me in the floor to take a nap because by this time we were both exhausted. He fell asleep almost immediately and just as I got comfortable the phone rang. The nurse was on the other end and said all the bloodwork came back within normal limits. I let out a big sigh of relief because if it was cancer it would show up in his bloodwork. It also didn’t show any signs of an infection so it had us puzzled. I hung up the phone and relayed the message to my husband who also relaxed a little. Now we just had to wait for the results of the x-rays. That can within about 10 minutes, but this time I knew it wasn’t good because the doctor was on the other end of the line. He told us they found lesions on his lungs we needed to come back for a TB test and they were sending him for a CT scan of his neck and lungs. The first stop was the doctor’s office where we got a bunch of dirty looks for going straight back, but the nurse and doctor were waiting at the door for us. The nurse took my son into a room just inside the door of the office I collapsed and started to cry. The doctor picked me up, wiped my tears and told me to hold on my son was going to need me and he wasn’t going to abandon us no matter what this was because we were like family to him. The nurse brought my son out of the room and off to the hospital we went for his CT scan.

They wouldn’t let me stay in the room while they did the scan. I paced the floor outside the door. The radiologist looked at me and asked if my son was the one in there. I said yes and that I was scared and for him to please figure out what was wrong with my baby. He smiled at me and promised he would. When he came back out of the door though there was no smile and he quickly ran down the hall to his office. I knew immediately this wasn’t good and they brought my son out. No one smiled they gave us a hug and said good luck. We went back home again with no answers to wait for a phone call. When 4 o’clock came and went I let out a sigh thinking maybe things were okay the pediatrician’s office had closed. My son’s went outside to play and my husband and I started to make dinner. Just then the phone began to ring and I jumped out of my skin. My husband picked up the phone because I couldn’t and I could hear the doctor on the other end. My heart sank and I began to shake knowing by my husband’s face it wasn’t good. The doctor asked to speak to me too and again relayed what he had told my husband. We need to pack clothes for a couple days, he needed to go to the hospital in St. Louis, and we would be greeted by an oncologist and pediatric surgeon.

A family friend took our other three children so we could rush to St. Louis. As soon as we entered the hospital we were rushed to the pediatric oncology floor and greeted by several nurses. They started paper work, did a second TB test to compare with the first one from the doctor’s office. Our heads were spinning no one could tell us anything about what was happening. The first doctor to introduce himself was the oncologist. He talked to our son a little and then had us come out into the hall so we could talk more in detail. He explained about the mass in our sons neck was massive and they were extremely concerned because whatever it was had already spread to his lungs. He was also concerned because of how quickly this had happened….it was being aggressive. The surgeon came while we were in the hall and he talked to us too. Our son would being having his biopsy at noon the next day and they would be able to give us an idea of what this was, but it would be another day or two before exact diagnoses would available. My husband went home to make arrangements for the other kids to be taken care of and I stayed at the hospital.

March 25^th …….I woke to a whirlwind of nurses getting us ready to go down to the pre-op area. My son had gotten his IV the night before, but they had to check it and of course the numerous people that we had to talk to down there. I was shaky, but still doing really good for what was going on. The nurses that were going to be in the OR with my son came and got him, I hugged and kissed him told them to take good care of my baby and watched them walk him through the door. It was then that I collapsed to the floor I couldn’t be strong any more. One of the nurse’s in the hall saw me and ran over to check on me learned from another nurse what was going on. They held me, picked me up and took me up to get a drink and something to eat. I knew my husband was on the way, but had run into traffic and it was taken longer than he had planned. I paced the floor watching as different families got updated on their loved ones and I still hadn’t heard anything. One lady asked me to sit down and me why I couldn’t seem to sit still. I explained to her what was going on. She asked to give me a hug and I accepted the hug….it gave me some comfort.

It was shortly after that I went to the desk to see if there were any updates for my son. There standing next to me was the pediatric oncologist. I turned to him and asked if he knew anything. He said yes he heard from the surgeon, asked me to follow him to one of the family rooms. I just stood there for a few seconds because I didn’t want to go they don’t take you into a room like that unless it’s bad news. I finally made my feet move and followed him. I sat down toward the back of the room and he pulled a chair in front of me. I remember his words like it was yesterday….the first words was “The day this gets easy for me I need to quit…..I hate to tell you this but your son has cancer.” I shook my head and as the tears started down my face again and screamed NO. One of my biggest fears had just come true…..how were we going to do this, how did this happen, and so many more questions!! My son was 10, he’s supposed to getting to enjoy his childhood….not having to face cancer and everything that was about to come with it. How was I going to explain this to him, his siblings and our families?

The surgeon came in about the same time my husband got there and found out what was going on. He explained they put a port in his chest because we still had no idea what kind of cancer it was, but they didn’t want to ruin his veins if chemo was needed. He said we would know the official diagnoses the next day. The nurse came in and said our son was asking for mom. So I did my best to dry my eyes and put on a brave face for him. I didn’t tell him what we had been told when he asked. I told him to rest when he woke up more we would talk about it. My husband had called his family and told them. So he came into sit with our son as I went and made those dreaded phone calls. Everyone had a million and one questions that we didn’t have the answers to. We rallied together as a family knowing that regardless what type of cancer it was we would need each other.

March 26^th or D-day for us as we call it. The oncologist comes into the room to group of people who want answers. My mom and sister came to the hospital to see us and try to find out more. I gave him permission to talk about my sons diagnoses in front of them. That was when we found out that he had Papillary Thyroid cancer. This cancer is not normally aggressive, but for some reason in his body it was. It’s also not common for a child so young to get, it’s not as common in boys/men, and the fact no known family ever had it. We had more questions than they had answers for and unfortunately that’s the way it would stay. When we met his endocrinologist and the ENT surgeon, but agreed they had never seen anything like this in a child. It was eventually explained that for him to have it this bad normally he would have needed to be at ground zero when Chernobyl blew up in the 80’s. That wasn’t possible I was only 13 when that happened in April 1986 (and I have never been outside of the United States). We did ask about my husband being overseas since he had been deployed to Iraq for 18 months. They reassured us it had nothing to do with that…..this had been building inside his body for a long time.

They removed his thyroid and lymph nodes from his neck that May. What was supposed to be a five-hour surgery turned into eight hours. They found out it had started to wrap around the arteries in his neck which is why he was having headaches. After the okay was given by the ENT surgeon we started Radioactive Iodine treatments (also known as I-131). It did rid the rest of the cancer in his neck, but we had to then work on ridding it from his lungs. They did more of the I-131 treatments, but in a person’s lifetime you are only allowed so much. Well he has already reached his limit. So we tried an approved Chemotherapy pill for four years only to find out it didn’t work and he can’t take it because he was having allergic reactions to it. March 26, 2017 marked his 11 year anniversary and he is still fighting Papillary Thyroid cancer. They still haven’t figured out how to get the cancer out of his lung. They keep the cancer suppressed with his Thyroid medication. If there is the slightest fluctuation in his levels it had to be changed accordingly. The doctor has now described the cancer like this…..the cancer in his body is like a drug addict looking for their next hit. If his TSH or T4 levels were to get high the cancer would spread uncontrollably.

We all know that there is a preconceived notion of what a cancer patient looks like. We see those losing their hair, sick from the chemo and much more. However, that’s not fair to those who don’t look like that and are still very sick!! This is the way it is for my son and many others like him. The scar he has from surgery goes from the middle of his neck up the left side into his hairline. He never lost his hair; never got sickly looking and to this day you would never know he’s sick unless he doesn’t take his medication. However, the scan and x-rays of his lungs still show a very different story!! Now he will cut up and joke around about what happened to him when asked about the scar on his neck. We have also heard the whispers, we have been called liars, and accused of making up his cancer story. While we know the truth many people don’t because of what they picture a “normal” cancer patient should look like. Cancer for some people can be an invisible disease just like many other diseases’ out there.