‘Mom, I’m in so much pain.’ 5 days later, she spiked a fever. A lightbulb went off.’: 16-year-old girl embraces ‘beautiful’ bald head during battle with Ewing’s Sarcoma

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“This is a story about my 16-year-old daughter. Our story begins before she was born. She was already a special kid before she arrived in the world. I dreamt of her three years before she was born.

After my husband Jimmy and I had our son, I started dreaming that I gave birth to a baby girl over and over again. I would give birth her in all sorts of place – the mall, my car, my mom’s house, weird, foreign hospitals. I had this dream a few times a week. Every time I had her, she looked the same – a head full of dark hair, big puffy cheeks like a sumo wrestler, a little cowlick on the back of her head. The doctors would always announce, ‘8 pounds 2 ounces!’ I also dreamed her name, Mattie.

My two boys’ names were Dallas and Dyllan, so I thought I would continue with D names before the dreams. But they were just so vivid in my mind.

Courtesy of Jody Cole

I would hold her, kiss her, and look her in her eyes. I knew this baby… but when I woke up I lost her over and over. It began to make me feel really sad and a tad crazy. So, when we decided to try again and got pregnant, I knew it was her. I knew from the first day that this was the baby I had been shown.

When we went into labor, I told all the nurses this story and they asked me how much my boys had weighed. I said Dallas weighed 5 lbs 12 oz and Dyllan weighed 6 lbs 7 oz. They proceeded to inform me that there was no way this baby would weigh as much as I had dreamt up. Birth weights run really close each time, and I hadn’t gotten as big as I did with the boys this time around. There was no chance.

But when she was born on June 28th, 2002, she had a head full of dark hair, big puffy cheeks like a sumo wrestler, and a cowlick on the back of her head. The nurse put her on the scale and asked me, ‘How much does this baby weigh?’ I confidently replied, ‘8 pounds 2 ounces.’ She turned around and nodded. It was her! It was the baby I had known for 3 years! The one I had held and kissed and loved. The one that God had given me a glimpse of. The one that had a special purpose.

Growing up, Mattie was very independent and never needed anyone. She was perfectly happy just being in her room, playing by herself. She was always very sure of herself. Never afraid to not follow along and voice her opinion if she didn’t agree with something. But always in a sweet manner. She was never really jealous when we had her baby sister, Ellie. I mean, they had their sister fights, but nothing serious. She loved her and took care of her. That was just her nature.

Courtesy of Jody Cole
Courtesy of Jody Cole

Fast forward to one day last summer. Mattie started complaining to me that her hip was hurting and the pain was radiating down the back of her leg. She pointed to where a sciatic pain would be. We told her, ‘I’m so sorry, but welcome to the club. You’ve probably inherited the horrible hip problems from the Johnson side of the family.’ I, myself, have hip dysplasia that hurts every day. So, I really didn’t think a lot of it.

She told me the pain would come and go, which is what mine used to do before I got old. So, I took her to a chiropractor which seemed to help her. We treated her with ibuprofen, heat, and ice. It seemed to ease it some. Then, on Christmas morning, she sat on the hard floor opening presents for a while. When she got up, she was in a tremendous amount of pain. It was followed by a week of unending pain.

Five days later, she spiked a fever. A light bulb went off. A voice that said, ‘Don’t you think it’s strange that your pain didn’t start until you were older? She’s just 16 and has this much pain?’ So, I finally talked her into going to the emergency room at one in the morning. After blood work and an x-ray, we soon learned the fateful news. ‘She may have a tumor in her hip,’ we were told.

Courtesy of Jody Cole

That very day, we were sent to the Cincinnati children’s hospital to do a biopsy for confirmation. The news turned out to be true. On January 8th, 2019, our world was totally flipped upside down. As our whole family gathered in the oncologist office, we learned that she had Ewing’s sarcoma, a bone cancer that effects adolescents between the ages of 10 and 20. It’s caused when cells go out of whack during puberty and is not hereditary, but environmental. Mattie would need chemo and surgery.

I cannot tell you the intense sorrow, terror, doom felt that day. I looked at my sweet beautiful girl and could not believe it. That she had to endure all that treatment. That she would lose her hair. That she was going to be very sick and I couldn’t help her. All I could think was, ‘Why my baby?’ I sure never thought it would be us. I had so many questions, but all I wanted to do was hold her and sob.

I totally lost my cool, but my Mattie barely cried. She was focused and she listened to what they told her she was going to have to do. We all assured her that we were her posse and would be there for her every step of the way. And me being a hairdresser, I assured her that I would make sure she had pretty hair and pretty eyelashes and I would never leave her side. We would get through it as a family.

Courtesy of Jody Cole

After hours in the office, we went to lunch in the hospital cafeteria. Everyone was so hungry and thirsty. Mattie laughed and joked around, while I couldn’t bring myself to swallow food. For one, we had no insurance. My husband’s company offered it, but we decided it was more important to pay our house payment than the very large insurance premium. We couldn’t afford it. All I could think was, ‘Now what? How are we gonna make it?’ My stomach twisted into this giant knot and the tears couldn’t stop. I remember going to bed that night, sobbing and screaming, ‘Please don’t take my baby!’

Mattie told a friend of mine that she was more worried about me than she was for herself. At this point, I knew I had to pull it together and give myself a pep talk. I told myself, ‘You can do this! You have to be strong. You are now a warrior mom and your girl does not need you being a bubbling crying mess all the time. She needs you to take care of her!’

One day, we were sitting in the surgeon’s office waiting to get results from the CT scan. I told Mattie that we had all been praying for her, and so many others too. I told her that maybe when the doctor walks in, she’d miraculously be healed. Her response was, ‘No, I don’t think so. God told me a long time ago that I had to do this.’ She was pleasant and calm. I didn’t know what to say to her. She just simply knew.

Courtesy of Jody Cole

During the start of this, I also found out that my husband’s friend had a stroke. He had five kids and was the main bread winner of the house, but could no longer work. It weighed on me heavy that I should give him a thousand dollars. When I told Mattie about the situation, she immediately said, ‘We need to give them a thousand dollars.’ It was like God was talking to us both. But when it came time to write the check, keeping our financial struggles and Mattie’s condition in mind, I contemplated giving less. Then, out of nowhere, I swear I heard God say, ‘Jody, write the check for a thousand!’ So, I did.

I hurried and drove over to the house late at night to drop off the check. Long story short, when I got back home at 9:30pm, my husband was in tears. He handed me some small paper he had in his hand, hardly able to speak. The unthinkable happened. When I looked down, I saw not one, not two, but three checks, one thousand dollars each. While I was gone, my husband’s old work friends each brought us them. The following week, I also received a check in the mail for a thousand dollars and as well as another card with, guess what, another thousand in it! I felt like it was God totally showing off! And this was just the start of the amazing blessings.

Courtesy of Jody Cole

After posting about Mattie’s condition online, the complete outpouring of support and love we’ve been shown from our family, friends, church, and community has been unbelievable. My sister organized a big benefit, our local restaurant Gracie’s hosted an event and gave us a percentage. My friend Jamie organized a GoFundMe. Every school around us has dedicated a game to Mattie. We all wore yellow for her and collected donations at the door. And that’s not all.

We’ve gotten care boxes from schools in Texas, Florida, and nearly every state in the country. Mattie’s school teamed up with our alma matter Edgewood and coordinated a staff basketball to raise funds. Every day, someone shows up at our house with some sort of blessing, food, or gift. We get so many encouraging cards in the mail, and don’t even get me started on Facebook. Every day, I get a message or a text from someone new telling me how Mattie is giving them hope and faith. We are in awe of it. Me and my husband just walk around crying sometimes because of the abundant blessings! It has sure helped to turn our frowns upside down.

One of the best parts of this whole journey is seeing my daughter’s strength. Mattie got to attend prom this year with her friend Jessica. Instead of wearing her wig, she decided she wanted to own her cancer and go proud, bald, and beautiful to prom.

Courtesy of Jody Cole
Courtesy of Jody Cole
Courtesy of Jody Cole
Courtesy of Jody Cole

After six rounds of chemo, Mattie just had a surgery called a hemipelvectomy to cut off her ilium bone where the tumor was. Her fibula bone, the small bone in her leg, was also removed and used to rebuild her hip.

Courtesy of Jody Cole

We are currently in rehab in the Cincinnati children’s hospital to help Mattie get stronger. My prayer for her was that she has a supernatural recovery. Well, it seems like it’s already happening. This courageous girl is twelve days out from having major surgery and she is blowing the minds of all the medical personnel. She is pulling herself up, walking, and doing things no one could have predicted. To add to this, our oncologist just recently informed us that all the margins were clear and the tumor they took out was not viable at all. The tumor was completely dead and the chemo did it’s job! As of now, she is completely cancer free.

Courtesy of Jody Cole

We will continue to do chemo treatments to prevent what they call cancer dust, or cells that float around after a tumor is removed. But we wholeheartedly believe that she will be cancer free for the rest of her life. That she did what God has asked her to do with grace, a positive attitude, and a smile for anyone who she came in contact with.

Courtesy of Jody Cole

She is an inspiration to me and to many others that know her. Her unshakable strength and faith have gotten her this far and will see her through to the end. She is Mattie strong.”

Courtesy of Tree of Life Photography
Courtesy of Tree of Life Photography
Courtesy of Tree of Life Photography

This story was submitted to Love What Matters by Jody Cole of Madison Township, Ohio. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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