‘It’s a cancer children are known to get. Your daughter has a tumor in her brain.’: Parents work to overcome daughter’s pediatric brain cancer diagnosis

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“Abby, my sweet and kind-hearted daughter, age 6 at the time, was full of life and wonder. She had chubby cheeks with dimples and long curly strawberry blonde hair. She loved her hair. She was known as the girl with curls. She even decided to cut her own bangs. She decided she needed them. She did an amazing job, to be truthful. She loves animals and bug hunting and just being outdoors. Her dream is to own a rescue farm. She wants to save all the hurt animals. She tells me, ‘Mom you can do all the harder work, I will just give them the love they need.’ I told her, ‘That’s fine sweetie, I don’t mind the hard work.’

Little girl stands outside holding yellow flower
Courtesy of Debbie Davis Seib

I began to notice changes in Abby, at least with concentration, in the fall/winter of 2017. Subtle things like not having the ability to concentrate, sometimes repeating words over and over. We talked with her teacher and doctor. We all agreed to try an evaluation for ADHD, which came back that she might need medication. We tried a couple different ones but Abby told me she didn’t like the way it made her feel. So we immediately dropped the medication. She struggled in school, but my husband and I helped her work a little harder to keep up. Everything seemed fine for a couple of months. Then in 2018, a few weeks before Easter, she began getting headaches and sometimes would be sent home. I wasn’t too concerned because migraines run in my family. But then she began waking up with headaches and vomiting the later part of April. To the point she was sent home more than she was in school. I began to worry a lot. But I never knew what terrible diagnosis lay ahead.

Father holds toddler daughter in his arms as she smiles
Courtesy of Debbie Davis Seib

On April 28th my husband and I took Abby to her primary care (my husband has been at every appointment and hospital stay) doctor. He did a few tests checking her balance and hand eye coordination. He told us he would like Abby to see a neurologist. I thought, ‘fine, we can finally get a diagnosis of migraines and get her some medication.’ No other thoughts possible popped into my head.

Abby was scheduled to see a neurologist on May 3rd. Once again, my husband Dave drove us to Flint to see the neurologist. Abby wasn’t feeling well this morning either. She had been vomiting all morning. The nurse took us back into this cramped little office that had nothing in it. I was very skeptical when I walked in, thinking, ‘why are we here?’ The place was dingy and not professional looking. But Dave, Abby and I patiently waited in the room. Abby told me, ‘Mom, I have to puke.’ We searched for a nurse, couldn’t find one and I immediately took her to the sink in the room and she vomited many times before the doctor came in. The first thing I told him is she has been vomiting in your office since we got here. He wasn’t too concerned.

He had her walk a straight line and do the hand to nose test. He told us everything is fine. ‘I see at least 7 kids in here a day with symptoms like your daughter.’ He told us it is probably due to allergies. He patted my daughter on the head, and gave her a pen. I said, ‘Well what about a CT scan or MRI?’ He said it wasn’t needed but we might want to take her to ER for dehydration. He prescribed a prescription for allergy meds and nothing more. Fortunately, Abby has a great and very concerned pediatrician. He called me later that day around 3 p.m. He wanted to know how the appointment went. I told him ‘honestly, not well. Nothing was accomplished or found out.’ He told me to get Abby into the ER that evening – he would have someone ready to give her a CT scan.

Little girl stands in home wearing jeans with red bandana in her pants and in her braids
Courtesy of Debbie Davis Seib

On May 3, 2018, at 5:30 p.m. we took our daughter into the ER, instructions of Abby’s primary doctor. I went back in the room with Abby and Dave. Abby was smiling and talking feeling much better than earlier today. I told her, ‘Don’t worry, we will get the CT scan, get some headache medication and go home.’ I was terribly wrong. I walked beside Abby as they wheeled her in to the room for the CT scan. ‘I will see you soon sweetheart,’ I told her. About 10 to 15 minutes later they wheeled Abby back. I waited for the doctor to look at the results, chatting away with my sweet little girl and her dad. The doctor came in – and that’s when our world fell apart.

‘Step out with me, we can talk in another room,’ the doctor said. I screamed, ‘No I don’t want to go, nothing is wrong with her!’ She tried to calm me down. We went into this room that felt like it was smaller than a cardboard box. That is when I heard the words, ‘Your daughter has a tumor in her brain. From where it is, I am thinking it is a cancer that children are known to get.’ I screamed, ‘No no no no!’ I left the room and went outside and screamed into the silent parking lot. I couldn’t breathe, my heart felt like it might burst. I called my mom and we cried together. I felt my whole self being thrown into a hellish nightmare, one I couldn’t leave, but one that could possibly take my beautiful daughter away. I don’t know how, but I came back into the room.

My sweet Abby was still smiling and chatting away. I took a deep breath and looked at Dave. ‘We have to tell her,’ I said. The doctor left us to give the horrible news. I looked at Abby and I told her, ‘You know those bad headaches and the vomiting you keep having?’ Abby looked at me and said, ‘Yes mom, they hurt.’ I told her, ‘It’s because you have something growing in there that shouldn’t be there. We have to get it out.’ She didn’t cry or anything. She just said, ‘Ok mom.’ I explained we wouldn’t be going home, but we are going to the Children’s hospital in Ann Arbor right now.

Little girl with brain cancer sits in hospital room with books and toys
Courtesy of Debbie Davis Seib

My daughter and myself were loaded into the ambulance for an 90 minute drive to Ann Arbor. Dave was following the ambulance in our vehicle. I didn’t even get a chance to say goodbye to my 13-year-old son Zach. No tucking him in and kissing him goodnight. Grandma was coming to stay with him.

On May 4th they took Abby in to get a biopsy. Seeing my daughter sedated and being hauled away brought me such anxiety. They brought her back into the hospital room a few hours later. We waited to see if it was actually cancerous, and if so, what type. I kept Abby busy playing in the Child Life room doing arts and crafts. My husband ran home as quickly as he could to grab some bags. We packed nothing because we thought we were coming home.

That evening on May 4th we were told our daughter had a cancerous tumor and a full resection would be needed on May 7th. They didn’t tell us what kind – they were not certain. We reminded Abby that during the surgery she wouldn’t feel anything, but afterwards things might seem different for a while. ‘I’m scared, but I’ll be brave,’ she innocently told me. Watching your daughter being wheeled away for a 4-hour brain surgery is absolutely defeating. I had no idea what to expect. I just hoped they could get all the cancer out. We got updates on how her surgery was going and finally after 4 hours she was done and going to recovery.

They called us back to see Abby. Seeing my little girl with her head in bandages with IV’s and crying brought me to a horrible place. I walked out and found a bathroom to cry my eyes out. My 6-year-old girl has endured more than most adults ever will. Abby cried that her head hurt and she couldn’t move her right arm, and her right leg felt like jelly. She was also seeing double vision. She suffered from Pos Fossa, a term that means the brain hasn’t recovered from the trauma. I can honestly say Abby didn’t complain much. She just wanted to go home. Her frustrations came when her right dominant hand was no longer working, and walking became much harder to do. The double vision was not helping her either. But slowly it went away. She decided if she couldn’t use her right hand, she would use her left. She was retraining her brain.

Little girl with brain cancer sits in hospital bed with bandage over her head as grandmother sits at her side
Courtesy of Debbie Davis Seib

We found out it was Medulloblastoma, a rare but common pediatric brain cancer. Still today, her right hand isn’t much use to her. She forgets about it a lot. She prefers her left now. My budding artist is no longer interested in drawing or painting, it takes too much concentration and skill, she says. Her walking has gotten better but she still struggles to run and to get up stairs. We stayed in the hospital for over 3 weeks. Then we got a 5 to 6 week break. Her incision wasn’t healing properly and we were having to make many trips to the clinic for collagen strips to put in her wound.

Once the healing was almost complete we celebrated her 7th birthday and started radiation. We knew the radiation would take her hair since it was concentrated in the head and spine areas. We told her that her beautiful hair would fall out but it would come back. Honestly though, we didn’t know if it would. Some never regain their hair. But we remained hopeful. Within a few treatments, her scalp started getting sore – we knew it was time to cut off all her hair. She took her hair being cut like the superhero she is. I silently cried watching all her beautiful curly hair hit the floor.

Little girl with brain cancer stands in hospital gown in front of Superman statue
Courtesy of Debbie Davis Seib

By the 10th treatment, it was gone. Abby didn’t like the radiation treatments because she could smell weird smells and could see flashes of the light. A few times she cried because she didn’t want to be face down and strapped to the board. But her amazing radiation team helped make it easier.

Young girl with brain cancer lays on her stomach on hospital bed awaiting radiation with her team at her side
Courtesy of Debbie Davis Seib
Back of little girl's head that has scar from surgery
Courtesy of Debbie Davis Seib

We finished 30 rounds of radiation on July 19th. She rang the bell and we had a party. We also got a break from July 20th until August 28th. The only thing we had scheduled was having a port put in. Once again, my daughter was going under the knife. No child should know all the pain my little girl knows. She never got to go swimming that summer, never got to truly play and enjoy what summer means to a child. Children with cancer miss out on so much. But we tried to give her as much normalcy as we could.

Little girl with brain cancer sits on couch smiling with knit unicorn hat on
Courtesy of Debbie Davis Seib

Her back to school blast was not fun for her. The bounce house she once loved was more like a chore and at times scary for her. School started August 22nd. She went the first day for a few hours. That’s all she could handle. Then chemotherapy started August 28th. That was very hard on her body and still is. She wakes up crying about shots. She wakes up confused and angry. She has said many times she hates her life, she wishes she weren’t born. This is from a 7-year-old little girl. The chemo took her hair that has begun to grow back. She was so upset because it had finally starting growing in. What chemo and radiation do to a growing little body is absolutely devastating, especially to the brain area. We will never know the true effects until later in life. Delayed learning, thought processes, anger, frustration, confusion, secondary cancer, relapse, infertility, Pos Fossa – effects that never go away. These are just the things my daughter will face in the future.

Little girl with brain cancer lays in hospital bed crying
Courtesy of Debbie Davis Seib
Little girl with cancer lays crying in hospital bed as adult rests hand on her head
Courtesy of Debbie Davis Seib

We are currently going on our 6th round of chemo. We have until July 2019 for the maintenance chemotherapy. But the fear will never go away. With every lab draw or MRI, the fear will be there. It’s a world you will never escape without scars or fear. For a parent, this is something you take with you until your last breath. The ‘what ifs’ eat you alive. Childhood cancer is something you can never walk away from without a piece of your heart and soul taken along the way. We learn to appreciate the moments better, love harder and live with the most heartfelt zest. Because for the parents that have to hear the words ‘your child has cancer,’ we are never ever giving up hope.

Little girl with brain cancer sits in hospital bed petting dog that stands at side of her bed
Courtesy of Debbie Davis Seib
Little girl with cancer sits smiling on father's lap
Courtesy of Debbie Davis Seib

Abby is currently doing well even with the ups and downs and more chemo treatments. She is strong, fierce and a warrior. We are in this fight to win. Because I can’t accept any other option. Please raise your voice and awareness for childhood cancer. It only gets 4% funding but 1 in 285 children will get a cancer diagnosis. It is the number one disease killer in children. Just because it’s not your child doesn’t mean you can’t advocate. Because cancer doesn’t discriminate. It doesn’t care how much you love and want that person, it just takes and takes.”

Little girl with cancer sits in white fuzzy chair outside as mother crouches beside her with arm around her
Courtesy of Debbie Davis Seib

This story was submitted to Love What Matters by Debbie Davis Sieb of Davison, Michigan. You can follow their journey on Instagram.Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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