“On October 20th, 2010, my son Joseph Cords came into this world at 36 weeks. He weighed 6 lbs 5 ounces and had the most beautiful blue eyes I had ever seen. I fell in love and he was my world!
I was told I would never be able to have children, and here he was, my perfect world. Shortly after being born we were told he had an unusually high white blood count and needed to stay in NICU until his count came down.
After 11 days in the hospital, we finally got to take our little world home! As the years passed, he would show himself to be the happiest, kindest, loving little boy that would melt your heart! He was an adventurer and loved to create things, either with Legos or whatever he had at the moment.
In April of 2014, we found out that we would be having another child, and Joseph was so excited! He didn’t care whether or not it was a boy or girl (sister), he was just happy about having a baby! He insisted on coming to appointments to see and hear her heartbeat.
On January 17th, 2015, our daughter Kaylee was born and Joseph loved her so much and would say ‘she was his baby.’ He loves his sister so much and she loves him so much, it is amazing watching them together at times.
Joseph was a very active child. He loved playing in the mud, at parks, hiking, swimming and camping! One of his favorite things to do was star gaze. He loved watching baseball because it is his favorite sport.
He was a cautious boy, but loved life. Joseph loves school and loved everything about it. From playing with friends to learning, he enjoys every minute.
In May 2017, Joseph was diagnosed with Medulloblastoma, and our worlds shattered.
I couldn’t breathe, my husband was numb. ‘What do we do?,’ my husband asked. Our world was not the same because our oldest child, our son, was being attacked by an aggressive cancerous tumor that would impact the rest of his life. My dad had come down immediately to help us keep our sanity, reminding us we needed to take care of ourselves too. I cried trying to think of how I was going to explain this to my son, so he could understand. I would just stare at him and think, but I had no words. My husband would just pace.
Joseph’s favorite superhero at the time was Superman. I told him Superman’s weakness was kryptonite and that it could hurt him. ‘You have kryptonite in your brain, baby. The only way to survive is for the surgeon to remove it, so you have a chance to heal,’ I told him, fighting back tears.
On May 12th, Joseph was admitted into the Sanford Children’s Hospital because he had a tumor the size of a mandarin orange and it created hydrocephalus, excess fluid on the brain.
They immediately started him on steroids and pain medicine so his surgeon could get in a special medical tool to ensure the surgery would be precise. On May 16th, Joseph got dressed up as Clark Kent and underwent surgery to remove the tumor.
He did an amazing job, was able to remove the tumor and we donated it to research. We were told that most likely Joseph wouldn’t wake up for a while and they were going to do an MRI after surgery. As Joseph got into the room after surgery, he started to wake up and tried to pull the breathing tube out. They immediately had to put him back to sleep so they could do an MRI. Once he got back from that he started to wake up. His first words were, ‘I am starving mom.’
We laughed and said we had to make sure he could swallow before he ate food. That evening Joseph stood up after having surgery the same day. He is quite the fighter and always had that outlook after beginning Radiation and Chemotherapy.
He would always say, ‘Superman never gives up, so I can’t give up.’
Joseph had such a positive outlook through everything and was always smiling, even when I knew he wasn’t feeling good. Joseph is also the type of kid that always tries to make others happy or have fun. He had gone through heavy radiation and was beaming with once-a-week chemo for 31 days. He got a 6 week break and began the max dosage of 3 different chemotherapies for his age and mass. He had 3 different chemotherapies for 3 days. He would stay in for four days to make sure he was okay, then we would go home and spend our time together, trying to make sure happiness was at the top of the list.
During Joseph’s treatment, he continued to go to school as often as he could. His teachers would come see him and he would always ask if the kids were behaving themselves. He would always make his teachers laugh.
He always loved putting a smile on everyone’s face. There were times he would walk through his treatment center and check on other children as well, giving them whatever words they needed to help them.
Joseph would have to get blood transfusions. The chemotherapy took it’s toll on his counts. Joseph had to go in for rebound sessions and would be in for at least 3 days, depending on whether or not he needed a transfusion and how long it took for his Neutrophil counts to go up. Joseph spent a lot of time in and out of the hospital. He had a lot of side effects, but we were determined to give him the best quality of life. Joseph would cry and get upset when he couldn’t remember what he already learned in reading class. Frustration would set in, and we would have to remind him it wasn’t his fault that between the cancer/tumors and treatment, it took its toll on his brain. His doctor would always go above and beyond for him, his team of doctors and everyone involved are amazing. For everything he went through, Joseph was lucky to come out as well as he did the first time.
One of the most beneficial things for him was doing Occupational therapy and Physical therapy while doing treatment. It helped him regain strength back.
On March 12th, our doctor called us as I was picking up my husband from work. I’ll never forget the upsetting news. ‘Joseph’s cancer is back,’ he said. ‘It’s worse. It has spread farther, with more tumors.’ It was rapid, because just 3 months earlier he had a clean scan. We were looking forward to another clean one to start hormone growth therapy. When we got the news, my husband started to cry. I was blank. ‘What do we do now?,’ I asked. ‘Take a week to spend time with each other,’ he said. We would regroup and go over everything the following Tuesday. We came home and I had to tell my son the cancer came back. He started crying.
‘Mom, I don’t want to go back through Chemo again,’ he said. ‘No more surgery, no more hospitals. Please!’
My husband and I talked with the doctors. They informed us his quality of life was at stake and that we needed to think about his already existing deficits and understand how he felt. Joseph can’t take anymore radiation and chemotherapy because of the problems he already has. We called down to see if Joseph was available for any trial. They sent his medical information to St. Jude and a week later it became available, but at the cost of further damaging his kidneys and liver. The trial was to see if they could stop the progression of his tumors. The problem is, there needs more research done in the area of the brain concerning cancer and tumors. We need better options other than radiation and chemo.
Our family suffered the brunt of Medulloblastoma emotionally. My daughter would cry for her brother when he had to go into the hospital for treatment. She didn’t quite understand what was going on other than her brother getting really sick.
My husband and I would feel hurt every time we had to split our time between the kids because whenever we did anything, we did it together as a family. Both our children have grown up a lot and through everything, I couldn’t be more thankful for the time the surgeon and doctors gave us with our son.
We don’t know how much time he has left. The one thing we don’t take for granted is the time we have now. Every day is an adventure, and it will continue to be.
My husband and I decided to do these beautiful pictures, so we have these last precious memories as a family. I couldn’t talk during photos because I was trying not to cry. I love my Joseph so much.
The night before the photo shoot I just sobbed into my husband’s arms. I couldn’t come to terms with my son’s life ending. I kept telling my husband over and over, ‘Jason, I cannot lose one more moment.’ My husband nodded his head. ‘I know,’ he said, as he held me tighter.
These will be our last family photos that are masking this disease. I wanted to save his smile and innocence inside a picture, since I couldn’t save him. These pictures are the most important memories I will have of our son. When the end happens, I will have those photos to remind me of the wonderful times we had fighting a horrid disease.
I will have those beautiful blue eyes I saw for the first time when he came into this world.”
This story was submitted to Love What Matters by Danea Cords of South Dakota. You can learn more about Joseph’s journey here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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