‘My husband said, ‘He has a tumor.’ How had we missed this? It was hiding in plain sight.’: Mom of 5-year-old cancer survivor raises awareness, ‘We don’t expect it to be OUR kids, until it is’

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“My life was forever changed in October 2020, when my 5-year-old son Axton was diagnosed with cancer. It was a normal day. He was playing with cousins when he was bumped in his side. As soon as I saw him, I knew something wasn’t right. He was in a lot of pain. My husband and I decided to head home and see how he felt when he was more comfortable. On the drive, he kept telling us how bad it hurt

We decided it was best to see a doctor, so my husband dropped me and our youngest son, Theo, off at home, and he took Axton to urgent care. Theo was only three months old at the time, and in the midst of Covid-19, we knew it would be best not to take him out and risk him getting sick

Axton was seen at urgent care and they told us his ribs were probably bruised. ‘He should be fine with some Tylenol and rest.’ When they got back home, I knew in my gut something was seriously wrong. He was acting worse and wanted to lay down in bed with me. He wouldn’t let me look at his side, and cried in pain when I touched his belly. I told my husband I wanted a second opinion, and we needed to have the emergency room check him out. Just before they left, I took Axton to the bathroom to pee. It was the first of many earth-shattering moments when I watched in horror as he peed blood. I called for my husband and told him they needed to leave NOW.

They rushed out the door, while I stayed behind with Theo once again. I wanted nothing more than to be with Axton, but Theo was breastfed and one of those babies who would not take a bottle. Our local hospital wasn’t more than a few minutes away, but it felt like an eternity until my husband let me know they were there. It felt even longer while we waited for him to be seen. At this point, I was worried he had a bruised kidney, which would explain the blood. Yesterday he was perfect, so how could it be anything more?

I will never forget the moment when my husband called me and said the words that forever changed my life: ‘The doctor just came in and he has a tumor.’ I started to panic immediately. What did he mean, a tumor? He was bumped in the ribs. A tumor where? He explained they saw a mass when they did the ultrasound to check his kidneys. They were calling an ambulance to transport him to our closest children’s hospital immediately. He couldn’t talk for long because he had to explain what was going on to Axton. How were we supposed to explain something like this to a 5-year-old? Cancer is something we know kids get but don’t expect it to be OUR kids. Until it is our kids.

5-year-old kid diagnosed with Wilms Tumor receiving treatment, sitting in a chair with a blanket on his legs and a stuffed animal
Courtesy of Alexa Wright

After hanging up with my husband, I called my parents. 25 years old and I have never felt so young and helpless. I could barely get the words out when I called them. ‘He has a tumor and they’re taking him to Indianapolis. I need to get there,’ I cried with so much anguish and felt like I couldn’t breathe. After he was taken to our children’s hospital, we learned a bit more about the tumor. It was something called a Wilms Tumor, which is kidney cancer. It was hiding in plain sight. Wilms Tumors can get very big, but since they’re in the abdomen they can grow for a while before they’re found. When Axton was bumped, it pushed the tumor around his stomach. It caused bleeding in his abdomen and bruising on nearby organs. He had to receive a blood transfusion due to the blood loss.

The first thing I did once he arrived at our children’s hospital was to ask when I could see him. You can imagine my heartbreak and anger when they told me only one parent could be at the hospital every 24 hours. They also wouldn’t let me bring Theo. I tried my hardest to get him to take a bottle, but he just wouldn’t. I called and begged for them to just let me see Axton. I couldn’t eat, sleep, or drink anything without feeling sick. I knew the rules were in place to keep kids on the oncology floor safe from Covid-19, but I just wanted to be with my baby.

He needed surgery a couple of days later to remove the tumor and his right kidney. The hospital finally allowed me to visit an hour before he was taken back. I have never held my sweet boy so tight. I did my best to be strong for him, but I’d be lying if I said I didn’t cry. When they took him back to surgery, I lost it completely. My husband and I held each other and cried. His surgery lasted 7 hours, and he had an epidural placed to help with the pain. Never did I think my five-year-old son would have an epidural. He also had a port placed into his chest, to help make things like drawing blood, giving blood transfusions, and administering chemo easier.

5-year-old kid diagnosed with Wilms Tumor receiving treatment, sitting in a hospital bed while watching videos on a phone next to his little brother
Courtesy of Alexa Wright

After just over one week in the hospital, Axton was discharged. We were lucky enough to be able to stay in a nice apartment at the Ronald McDonald House as he recovered and started treatment. He had a break for a few days before he started chemotherapy and radiation. I felt guilty constantly. How had we missed this? Even knowing chemo and radiation were the best way to save his life, having to hold him down while a needle was forced into his chest, and watching as he received medicines so toxic we had to sign a waiver because of the horrible side effects was traumatic, to say the least. Not only for him, but for us.

We were starting to get used to everything when the pathology report came back. Stage 3 Wilms Tumor, Favorable, with a 1q gain. The ‘1q gain’ changed the course of his chemotherapy. It meant his type of Wilms was favorable but was at a higher risk of relapsing. After speaking with his doctor, we decided to go with a more intense chemo regimen. It would be 19 cycles; 4 of those cycles had to be done inpatient due to how strong the chemo is. He also did 7 days of abdominal radiation. He was an absolute champ and laid so still during it all.

5-year-old kid diagnosed with Wilms Tumor receiving abdominal radiation
Courtesy of Alexa Wright

He had multiple hospital admissions during his treatment. He lost so much weight, looking back at pictures is hard. He dealt with countless side effects: nausea, vomiting, diarrhea, constipation, loss of appetite, mucositis, mood swings, and he lost his beautiful blonde curly hair. He’s always been very social, he will talk to anyone, so being isolated away from family and friends during treatment was the hardest part for him. He grew even closer with his baby brother, and they still share a bond unlike anything I’ve ever seen.

5-year-old kid diagnosed with Wilms Tumor laying on a hospital bed watching tv and covered with a baby Yoda blanket
Courtesy of Alexa Wright
5-year-old cancer survivor laying on the floor on top of a blanket with his baby brother wearing Christmas and Hot air balloon outfits
Courtesy of Alexa Wright

After 8 very long months, Axton had his end of treatment scans in June 2021, and was declared ‘no evidence of disease.’ He got to ring the bell and was reunited with friends and family. He is still cancer-free as of January 2022. I wish I could say life has returned to normal for us, but it’s not true. Axton, my husband, and I all deal with trauma from his childhood cancer diagnosis. There isn’t a day that goes by and I don’t worry about him relapsing. He has scans every 3 months to make sure he is still free of cancer and waiting for the results throws me back into panic mode.

5-year-old kid diagnosed with Wilms Tumor holding a big frame that says my first day of Kindergarten
Courtesy of Alexa Wright

Childhood Cancer survivors like Axton are at risk of complications from their treatment for the rest of their lives. The very thing that saved his life, puts his life at risk. Am I grateful? Yes and no. Survival rates for Wilms have gone up quite a bit. However, only 4% of funding for cancer research in the U.S. goes to childhood cancers. This is just not enough. Childhood Cancer is much more common than you think. We need better treatments for our kids, and children who will be diagnosed in the future.

5-year-old caner survivor holding a sign that says 'I am worth more than 4%' referring to the 4% of funds that go to childhood cancer research
Courtesy of Alexa Wright

Looking at Axton today, it’s hard to tell he fought for his life. He’s doing amazing in Kindergarten. His blonde curls are coming back. He’s the sweetest big brother, son, and friend. We cherish every single moment we have with him. I will never take one single second with him for granted. He’s my hero.”

5-year-old cancer survivor sitting on a blue couch with a shirt that says 'Mom's Hero'
Courtesy of Alexa Wright

This story was submitted to Love What Matters by Alexa Wright from Cambridge City, Indiana. You can follow her journey on  Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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