“This is my 16-year-old daughter’s story. Before she was born, our story began. She had always been a remarkable child even before she was born. Three years before she was born, I had a dream about her.
After my husband Jimmy and I had our son, I began to have recurring dreams in which I gave birth to a baby girl. I’d give birth to her in a variety of locations, including the mall, my car, my mother’s house, and strange, foreign hospitals. This was a dream I had several times a week. She had the same appearance every time I saw her – dark hair, huge puffy cheeks like a sumo wrestler, and a little cowlick on the back of her head. ‘8 pounds 2 ounces!’ the physicians would usually exclaim. Mattie was also her name in my dream.
Dallas and Dyllan were the names of my two sons, so I figured I’d keep the D theme going before the dreams. However, they were so vivid in my thoughts.
I’d take her in my arms, kiss her, and look her in the eyes. I knew this baby… but I kept losing her when I awoke. It started to make me unhappy and a little insane. So I knew it was her when we chose to try again and became pregnant. From the moment I saw him, I knew he was the baby I had been shown.
When I informed the nurses about this story before going into labor, they all wondered how much my boys weighed. Dallas weighed 5 lbs 12 oz and Dyllan weighed 6 lbs 7 oz, according to my calculations. They then continued to tell me that this baby will never weigh as much as I had imagined. Each time, the birth weights are very similar, and I hadn’t grown as much as I had with the boys. There was no way out.
She had a head full of dark hair, big puffy cheeks like a sumo wrestler, and a cowlick on the back of her head when she was born on June 28th, 2002. ‘How much does this baby weigh?’ the nurse questioned as she placed her on the scale. ‘8 pounds 2 ounces,’ I firmly replied. She shifted her weight and nodded. It had to be her! It was the three-year-old baby I had known for three years! I’d hugged her, kissed her, and loved her. God had shown me a glimpse of the one. The one who served a unique mission.
Mattie was an extremely self-sufficient child who never needed anyone. She was quite content to be alone in her room, playing. She was always confident in herself. She was never scared to speak up if she didn’t agree with anything and didn’t want to go along with it. But always in a nice tone of voice. When we had Ellie, her baby sister, she was never jealous. They had their sister quarrels, but nothing major. She adored her and looked after her. That was just the way she was.
Let’s go back to last summer on a single day. Mattie began to complain to me about her hip hurting and spreading pain down the back of her leg. She indicated the location of a sciatica discomfort. ‘I’m sorry, but welcome to the club,’ we told her. You’ve most likely inherited the Johnson side of the family’s terrible hip problems.’ I suffer from hip dysplasia, which causes me daily pain. So I didn’t give it much thought.
She said the pain will come and go, much like mine did when I was younger. As a result, I took her to a chiropractor, who seemed to be able to treat her. Ibuprofen, heat, and ice were used to treat her. It seems to help a little. Then she sat on the hard floor for a time on Christmas morning, opening toys. She was in excruciating pain when she first awoke. It was followed by a week of excruciating discomfort.
She had a fever five days later. A light bulb went out in my head. ‘Don’t you think it’s funny that your pain didn’t start till you were older?’ remarked a voice. She’s only 16, and she’s in so much pain?’ So, around one a.m., I eventually persuaded her to go to the emergency department. We found out the bad news after blood tests and an x-ray. We were told that she might have a tumor in her hip.
We were taken to the Cincinnati Children’s Hospital that same day for a biopsy to validate our suspicions. The information turned out to be correct. Our world was turned completely upside down on January 8, 2019. We found out she had Ewing’s sarcoma, a bone disease that affects adolescents between the ages of 10 and 20 as our entire family gathered in the oncologist’s office. It’s caused by cells going haywire throughout puberty, and it’s not genetic; it’s caused by the environment. Mattie would require chemo as well as surgery.
I can’t describe the deep sadness, horror, and impending doom I felt that day. I couldn’t believe it as I stared at my dear, gorgeous girl. That she had to go through all of this. That she’d start losing her hair. That she was going to get sick and that I wouldn’t be able to save her. ‘Why my baby?’ was all I could think. I never imagined it would be us. I was bursting at the seams with questions, yet all I wanted to do was hold her and cry.
My Mattie scarcely sobbed as I completely lost my calm. She was focused and paid attention to what they told her she had to accomplish. We informed her that we were her posse and that we would be there for her at all times. And, as a hairdresser, I promised her that I would make sure she had lovely hair and lashes, and that I would never abandon her. We’d make it through as a family.
We went to the hospital cafeteria for lunch after a long day at the workplace. Everyone was famished and thirsty at the same time. I couldn’t force myself to swallow meals as Mattie laughed and joked around. For starters, we were uninsured. My husband’s company offered it, but we decided that paying our mortgage payment was more vital than paying the hefty insurance cost. We couldn’t do it because we couldn’t afford it. ‘Now what?’ was all I could think. ‘How are we going to get through this?’ My gut twisted into a huge knot, and I couldn’t stop crying. That night, I recall crying and pleading, “Please don’t take my baby!” as I went to bed.
Mattie confided in a friend that she was more concerned for me than for herself. I knew I needed to get myself together and give myself a pep talk at this moment. ‘You can do this!’ I assured myself. You must be courageous. You’re a warrior parent now, and your daughter doesn’t need you to be a crying mess all the time. She relies on you to look after her!’
We were sitting in the surgeon’s office one day, waiting for the CT scan results. I told Mattie that we’d all been praying for her, as well as a lot of other people. I told her that she might be miraculously healed when the doctor arrived. ‘No, I don’t believe so,’ she replied. God told me I had to do this a long time ago.’ She had a lovely and serene demeanor. I couldn’t think of anything to say to her. She had a gut feeling.
During the initial stages of this, I learned that my husband’s friend had suffered a stroke. He had five children and was the primary breadwinner of the family, but he was unable to work. The thought of giving him a thousand dollars weighed heavily on my mind. ‘We ought to give them a thousand bucks,’ Mattie remarked as soon as I told her about the issue. It felt as if God was speaking to both of us. But when it came time to make the check, I considered giving less because of our financial difficulties and Mattie’s condition. Then, seemingly out of nowhere, I heard God say, ‘Jody, write a thousand dollar check!’ So that’s what I did.
I drove over to the house late at night to drop off the check-in a hurry. To cut a long tale short, my spouse was in tears when I returned home at 9:30 p.m. He handed me a small piece of paper he was holding, barely able to talk. The unthinkable took place. When I looked down, I noticed three thousand dollar cheques, not one, not two, but three. My husband’s former work friends each brought us one while I was away. The following week, I received a thousand-dollar cheque in the mail, as well as another card with, guess what, another thousand dollars! It felt like God was strutting his stuff! And this was only the beginning of the incredible blessings.
The outpouring of love and support we’ve received from our family, friends, church, and community since publishing about Mattie’s situation online has been incredible. My sister planned a large fundraiser, and our local restaurant, Gracie’s, hosted an event and donated a portion of the proceeds to us. Jamie, one of my friends, set up a GoFundMe page. Every school in the area has a game devoted to Mattie. We all wore yellow to show our support for her, and we took money at the entrance. Not only that but there’s more.
We’ve received care packages from schools across the country, including Texas, Florida, and practically every state. Mattie’s school collaborated with Edgewood, our alma mater, to organize a staff basketball game to raise funds. Someone shows up at our house every day with a blessing, food, or present. We get a lot of supportive correspondence and don’t even get me started on Facebook. Every day, I receive a message or text from a new contact telling me how Mattie has given them hope and trust. We are awestruck by it. Because of the abundance of benefits, my husband and I often just walk around crying! It has certainly assisted in turning our frowns upside down.
Seeing my daughter’s strength has been one of the most rewarding aspects of this trip. This year, Mattie was able to attend prom with her friend Jessica. Instead of wearing her wig to prom, she decided to embrace her cancer and walk proudly, bald, and beautiful.
Mattie recently had a hemipelvectomy, which involved cutting out her ilium bone, which was where the tumor was located, after six rounds of chemotherapy. Her fibula, a tiny bone in her leg, was also removed and used in the reconstruction of her hip.
We are currently doing rehabilitation at the Cincinnati Children’s Hospital to assist Mattie in gaining strength. My wish for her was for her to have a miraculous recovery. Well, it appears that it is already taking place. This brave young lady is twelve days away from major surgery and she is blowing the minds of everyone in the medical field. She is standing, walking, and doing things that no one could have predicted. To make matters worse, our oncologist just told us that all of the margins were clear and that the tumor they removed was not viable at all. The tumor had died totally, and the treatment had done its job! She has been cancer-free for quite some time now.
We’ll keep using chemo to avoid what’s known as cancer dust, or cells that float around after a tumor is removed. However, we are confident that she will have a cancer-free existence for the rest of her life. That she carried out God’s instructions with grace, a cheerful attitude, and a smile for everyone she encountered.
She is a role model for me and many others who know her. Her unwavering courage and faith have taken her thus far and will carry her to the finish line. Mattie is a force to be reckoned with.”