‘Is today the day?’ It was like she knew something we didn’t. She just wants to be a kid again.’: Parents share reality of 9-year-old daughter’s battle with brain cancer, ‘Her faith is high’

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“I wish there was an instruction manual for childhood cancer. Or something to show us how to handle watching our daughter suffer. How to handle the fear of losing her. You wake up every day with a feeling in your stomach wondering, ‘Is today the day?’

I tell you, it’s really hard having a kid with cancer. It’s been 8 months since Naomi got diagnosed. We haven’t worked since the day her tumor was found. We’re at a point where one of us probably needs to go back to work. But, if Naomi overhears us talking about it, her anxiety kicks in and she starts crying uncontrollably. For awhile, she was super scared she was going to die. With how she acted, it was almost like she knew something we didn’t. So, we’ve gone back and forth asking, ‘Do we break her heart and break our promise that we won’t leave her side through treatment?’

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Naomi got to where she was so scared to be in the hospital. She would freak out. She kept telling us she wouldn’t make it back out. She swore she was going to die at the hospital, and she was flat out refusing rehab. She constantly worried about them not letting her leave. We knew she had been lightweight giving up, but we hadn’t realized she was at this level. It was getting scary. We just prayed she would get something to actually look forward to, to renew her faith. When we brought up Disney, she didn’t want to hear about it anymore, because she didn’t think she would make it long enough to go.

Then COVID-19 hit, and we didn’t have the heart to tell her Make a Wish village was not opening back up. COVID took so much away from her, on top of the cancer. She has been locked down through the majority of her chemo, and has nothing to get excited about anymore. She gets excited about being somewhat normal.

Cancer has robbed this girl of almost everything. She is bedridden and too scared to sleep a lot of nights. She gets afraid she won’t wake up. As it goes on, her speech is getting worse. She slurs words. She gets so emotional at times. One day, she was missing her friends and just needed to talk. She finally got to call one. Her friend told her she loved her, and Naomi broke down. It breaks our heart to see how bad she is hurting. She just wants to be a kid again and has definitely earned it. She said she just wants to feel normal again, and to play like the other kids her age. She’s tired of being embarrassed by being in the wheelchair. She said everyone stares at her.

Courtesy of the Shorts
Courtesy of the Shorts

One day, we asked her what kind of feelings she had. She told us she felt useless. Not gonna lie, that broke our hearts. We get so wrapped up in her physical condition, we forget her emotions and mental condition. Most kids worry about who to play with or what to play with. For Naomi, it’s always the little things that bring the most joy. She got a full shower and put on brand new clothes. She forgot how good fresh clothing felt on her.

Getting ready to be admitted for round five of chemo, Naomi told us she didn’t want to leave until she could walk. She said, ‘Cancer is done taking things away from me; it’s time to take it back.’ We loved that she seemed to be getting a little more of her fighting spirit back. It had started to seem like she was giving up, and it was crushing our hearts to have to watch her.

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We didn’t sleep much. We couldn’t. We would get up every half hour to check on her. We would look at how peaceful she was. Thankfully, at this point, she wasn’t freaking out and having nightmares about dying anymore. Sometimes, we would wonder if she had made peace with it. But now, she reminds us real quick that isn’t the case. She is going to fight until it’s gone. She just knows God has her in the palm of his hand.

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We didn’t know what real heartbreak was until we were forced to watch our baby battle childhood cancer. Even though we walk around the house with a smile, being brave for each other, our hearts are smashed into tiny pieces. When you try to picture the future, it takes your breath away, because you can’t picture life without them. You can only take it day by day. If only we could keep our faith as high as hers.

The amount of love and faith this girl has is amazing. We have watched her go from being a carefree 8-year-old girl with lots of friends, to a 9-year-old who is scared to go to sleep out of fear she won’t wake up. She has separation anxiety real bad. She slurs her words and is bedridden. She will talk to her mom on the phone, and in less than five minutes, she will start asking where her mom is and why she didn’t talk to her. She gets so frustrated and emotional. Some days her memory and mind is great, but most days, not so much.

Courtesy of the Shorts
Courtesy of the Shorts
Courtesy of the Shorts
Courtesy of the Shorts

But she still tells us God is healing her, and she is going to have the most awesome testimony. Even when our faith slips, she helps us pick it back up. She let her bucket list go just to focus on her biggest goal… being able to walk again. We want to see her be victorious. That confidence boost may be the thing to help her keep fighting and kick cancer in the behind.

We know that end of treatment is coming fast. We also know that is when we find out what chemo did and what our options are. (We are holding faith and not accepting what they told us as far as no more options.) Even if the doctor gives up on her, we won’t. God won’t.

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With all the scans so far, no change has been detected. If there was, it was such a small amount it looked the same as the previous scans. We are taking it day by day. We’re not going to let it steal the joy we are feeling because we just love seeing her smile again.

She is trying so hard. The heartbreaks of watching your child suffer and fight will never go away. Seeing the determination and willpower will put a smile on your face. Recently, she was sitting and thinking and said, ‘I can’t walk, but I can still dance.’ She said she is going to keep dancing till she kicks the cancer out the door.

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We want to thank you all. The support and love you show helps us get through each day. You remind us we aren’t alone. You remind us to hold faith when we are at our lowest. Our family has grown so much since Naomi started fighting this battle.

UPDATE: Well, the results from her scan are in. Treatment did a good job. She has a new spot that popped up in her brain and a couple of old ones were left. She has one on her spine. They told us since the new one didn’t respond to chemo, there is no reason to put her through it again. They are just going to watch it for a bit. They told us at the beginning, if it didn’t get it all, watching and keeping her comfortable may be our best option. Now we are just waiting to see what is going to happen.”

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This story was submitted to Love What Matters by Gary and Melissa Short. You can follow Naomi’s journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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