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    Cayden's Story

Cayden is the youngest of three. There is 4 years difference between himself and his older brother and sister, but that never stopped him. He was born with personality and fit right in. He was always from one extreme to the other…either extremely happy or extremely mad, and he was the comedian of the family.

He would have you in tears with the funny stories he would tell. Especially on road trips…he would never stop talking. He would go into a comedy routine telling jokes and making up stories and you would die laughing, amazed at how young he was. He was the baby of the family and we all loved him.

Cayden and his brother were joined at the hip. They did everything together, and his sister was his second mom…she loved to baby him and called him "little brovy". He was a handful and fun to be around and life goes on and the children begin to grow up.

It wasn't long and soon both his brother and sister were in college. It was the first time you could really "see" the difference in age between them. He was the last child at home and everything began to change. The dog died, my husband and I separated and soon the house that once bustled with people and activity was down to only two.

That year was strange for both of us. The house fell silent and Cayden was in a "dark phase" in his high school years. He was still a comedian, only now it was a dark comedy but we got through it. We had our routines and began to talk and spend more time together. We rescued a cat at the shelter and suddenly the house wasn't as empty as before.

That winter Cayden started to get migraines occasionally. None of us thought much about it. When his brother and sister came in to visit…we would joke about it. Cayden would say "it's probably a tumor"….and we all would laugh and say…(in an Arnold Schwarzenegger voice)….."it's not a tumor!" The migraines would come and go…it was nothing.

He was going through a developmental stage and suddenly became almost 6 feet tall over night. He was too tall and too skinny even the skinnest skinny jeans were baggy on him. I took him in for a check up at his doctor's and everything checked out and she prescribed medicine for his migraines.

The medicine wasn't working though. Sometimes the migraines would last all day…then two days…then suddenly.... 6 days. The migraines kept him in bed, out of school and he couldn't eat becuase of the pain…he was losing weight and he was already too skinny. I was concerned…the school was concerned, and it was time to go back to the doctor and all of this happened over a few weeks.

His pediatrician sent us over to the hospital to have an MRI scan just to be safe. The MRI only took about 15 minutes and then I was called back to a waiting room where he was sitting. A nurse came in and told us the radiologist has found a tumor in his brain and that they were sending the information to the children's hospital in Charlotte. Then he left the room.

We sat there looking at each other for a moment…and then busted out laughing! "A tumor!"…"you jinxed yourself"….we joked! "How can you have a tumor?....You are only 15 years old!"….we laughed. The nurse came back and told us an ambulance was coming to take Cayden to the hospital in Charlotte, and for us not to leave. It was all happening so fast we could only think in the moment.

"Oh my God…they are kidnapping you!" I joked with him and although it was overwhelming and scary…we just carried on like normal. I called all of the family before the ambulance arrived. His dad, sister, brother, aunt and uncle, grandparents….and everyone was coming to the hospital and trying to beat a snow storm.

Then we were moved to the children's hospital in Charlotte…an hour from home, and while I drove…I thought…"who will feed the cat? …I don't have a change of clothes...how long will we be here?...what is happening to Cayden?"

The hospital had him in ICU with a policy of only three people in the room at one time. That was not going to work for my family…first of all… there are five in my immediate family. By the time everyone had arrived that night the hospital was full of Cayden's family and friends! You could not keep everyone out of the room…we were all over the place…down the halls…in the family area…it was crazy! Everyone wanted to see him.

None of us could believe this was happening. We met with his surgeon who told us it was probably not cancer…that this type of brain tumor is common and can be removed with surgery. We looked at the MRI scan and could see the tumor in his head. Cayden couldn't bear the migraines anymore and we were glad they found the cause… so they operated on him the second day.

That morning the nurses came in to move him out of ICU. His bed turned into a rolling bed…and with a few changes made… down the hall they rolled him with his dad and I close beside. We went down to another floor riding in a huge elevator and then on to the pre surgery room.

We met with the anesthesiologist who explained some more about the surgery and the risks involved…the standard…death being among them. I tried not to think about that and smile in front of him. That was one of the hardest moments for me…looking at him on the hospital bed going in for brain surgery. Knowing everything that was going to take place…knowing something could go wrong…this may be the last time I see him. What do you say?

He started to tear up a little when the doctors said it was time for us to leave. I was already holding back tears, but luckily we both kept it together. I grabbed his hand and told him everything will be ok that we all love him and would be there when he wakes up.

Then you leave the room…walking out in a daze with people in surgeon outfits running here and there, and schedules on the walls and doors after doors and elevators until you are finally ushered into another waiting room. Following the surgery from a number they give you…as you sit watching a screen. Waiting for him to go into surgery and then into the recovery room.

The surgery from start to finish was seven hours. Seven hours is a long time to wait. Everything goes through your mind. You hear the voices of the people around you…but everything is going through your mind. You watch the clock and wait.

Finally we see the surgeon approaching the waiting room. We all rushed over. He looked frazzled…the surgery itself had lasted three hours…longer than he expected. He spoke quickly with huge amounts of information all at once. It was not what they expected…it was cancer…grown into the outer layer of the brain and deep inside…he had to make a larger incision…the "S" style he called it…and replaced part of the outer covering of his brain…he has a plate and screws in his head…but it won't set off a metal detector…He lost a lot of blood during surgery and had a blood transfusion…he may be paralyzed…he may be paralyzed on his left side and need to be in a wheelchair…this may improve with physical therapy….

"Can Everyone Just Shut The Hell Up? Can We Stop Time For One Second! Can You Start Over Again Please….Slower This Time? What Did You Say? Did You Say He Has Cancer? Did You Say He May Be Paralyzed?"

It took an hour after the surgeon left before he awoke from anesthesia. That was the longest hour of my life. All the questions you start asking yourself. "Will he still be Cayden?...Will he be able to talk?...Will he wake up paralyzed?...what will I say to him?...Is he going to die?...Have I done the right thing?"….

A nurse came in and said we could see him now. We all jumped up and raced to the door. There was a moment walking down the hall I was afraid to see him….I thought about waiting a minute before I went in…but I quickly pushed the thought from my mind and stepped into the room.

It was dark in the room but I could see him lying on the bed…his head was turned away. There was a nurse looking down checking a read out. I whispered to her…"Is he awake?"….she glanced up and said "yes"…and then looked back down. I spoke up louder this time…"has he talked?...has he said anything?"…and before she could answer…he spoke up and said…"I just got out of brain surgery…what do you expect?"…..

My heart stopped a beat…it was Cayden speaking…and he was telling a joke…the happiness from that one gesture was overwhelming...it's still Cayden..."but is he paralyzed?"...and just as the question entered my mind, he rolled over and moved! It was a moment of joy you can never explain only experience. We walked over to him speaking softly asking if he could move both his arms and legs. Cayden looked up at us and said he was fine... joking and laughing right out of surgery.

It was a miracle.

That night was strange for both of us. I slept in the room with him. He had three IVs…two in one arm, and one in the other. He had wires all over him, hooked up to monitors…the nurses came in every two hours to wake him up and ask the same three questions….

1. What is your name?

2. When is your birthday?

3. Do you know where you are?

All through the night his heart rate kept dropping...an alarm would go off and a nurse would rush in to check. I sat in the dark most of the night just watching his heart rate monitor. Sometimes he woke up on his own and we talked a little. I would always ask if he was in pain? Did he did some water?

There was a huge scar from the top of his head down to the bottom of one ear. Looking at him in the dark with all the monitors and lights blinking I felt like I was in Frankenstein's lab. It was hard to sleep, it was freezing cold outside and we were in the middle of a snowstorm.

Cayden recovered quickly and within a couple of days he was able to get up and walk around. They moved him out of ICU on the fourth day. He stayed one night in recovery and then he was released. None of us could believe he was already coming home after having brain surgery! We were excited and scared at the same time, but this step was over now…time to move on to the next one.

After a week at home Cayden was becoming himself again. He could walk normally and the pain after surgery was minimal to none. His surgeon did an excellent job! It was time to meet with his oncologist now and talk about the cancer...another trip to Charlotte.

What he told us we weren't expecting to hear, but nothing so far had been expected... so bring it on! "This type of cancer only attacks the brain and spinal cord" he said. "It is very rare…with only reports of about 12 people having it". It is so rare, in fact, they had to send samples to other surgeons who had written journals on this type of cancer to help identify it. It has no name and isn't in any medical books yet. His oncologist himself would be writing about it and presenting Cayden's case to other physicians…..

Out of the twelve who had this type of cancer… half have died and half are still alive. Ok…so what does this mean exactly? Basically…they would be treating this as an aggressive cancer…with radiation and chemotherapy for 3 months. Then he will be on a chemotherapy program for 10 months and monitored with MRIs for the rest of his life.

Wow…that was a lot of information to absorb. Staying positive was our only choice and besides...we both liked his oncologist and he became the brunt of many jokes through all of this. We talked about everything together. Cayden knew all the risks, what was happening and what the worse case scenario could be. We all knew….we all stayed positive, we all kept smiling, we found the humor in it and that is what kept us going. Within a couple of weeks back at home he started radiation and chemo.

His radiologist was great and loved his job! He knew everything there is to know about radiology and loved answering questions about it. He told us "the radiation stops all fast growing cells…and cancer cells are fast growing…but so are hair and inner ear cells". He said Cayden would lose all of his hair during radiation and could have bleeding in his ear. He also might feel fatigued and have some short-term memory loss…so there were some side effects... but Cayden was ready to start and did what needed to be done.

To start radiation they made a plastic mold of his head to hold him in place on the table as the machine encircles him shooting a proton beam. The process is painless and fast only about 10 minutes a day. The chemotherapy he took in pill form each night which caused problems in the beginning since he hates to swallow pills. However, by the end of the 3 months we were both pros at fighting cancer…we were always perfectly on time to radiation and he could swallow pills like nobody's business!

We kept waiting for the side effects to begin. The chemotherapy could make him very sick with nausea…but nothing ever happened. He felt fine and was able to keep up with school work taking online classes. We were careful not to overdo and kept a low profile. We had a heavy appointment schedule each week and made a chart we hung on the wall. The weeks flew by and through it all he was fine.

Now he is finished with radiation and chemotherapy. He is not on any medication at all and has no pain and no side effects…but he did lose all of his hair (lol). He has gained over 20 pds since he left the hospital and is normal "Cayden" again...no more migraines...but lots of sarcastic jokes! He goes in next week for his follow up MRI to see the results and I am certain he is cancer free and life will continue on. Even if the worse case scenario were to happen…right now he is alive …he is downstairs…we may play monopoly tonight….and we are going to the beach for a week! Life goes on and you live for the time you share together.

It is a journey we will never forget. I will never forget Cayden’s courage and strength through it all. How he found a way to laugh, all the funny stories that happened along the way, all the doctors and nurses who helped to save his life, all of the family and friends who prayed for him and supported him along the way…..
to everyone….thank you.

Cayden in the hospital before surgery

Cayden today

For Cayden
Love, Mom

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It was a Blessing to meet yall and I will be praying for yall......
- 09 04 18 - 04:21