A Painful Family Journey
- Toddler Ollie Knowles is about to ring the bell after finally finishing cancer treatment from neuroblastoma.
- The aggressive cancer, which had spread to his spine by the time it was found, was tragically misdiagnosed for months over the course of 15 trips to the doctor. They dismissed his pain and discomfort as constipation each and every time.
- While his parents are thankful and so proud of their brave boy, they still don’t know if Ollie will ever walk again, as he is still paralyzed from the waist down.
- Neuroblastoma is a type of cancer that develops in neuroblasts, the immature nerve cells around the body. It can be found in the adrenal glands, abdomen, spine, chest, and neck. It occurs almost exclusively in children under the age of 5.
While his parents are thankful and so proud of their brave boy, they still don’t know if Ollie will ever walk again, as he is still paralyzed from the waist down.
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If the doctors had taken Ollie’s pain more serious, and had done more thorough tests, he would not be left paralyzed.
“They said that it was because of Covid, that a lot of the appointments were over the phone as we weren't allowed to go to the surgery, she said. “We have received counseling to deal with our anger about it, and we are just trying to look to the future.”
Feeling Helpless
Sarah and her husband, Phillip, also 34, first noticed Ollie’s swollen stomach and more frequent crying last July. “He was in so much pain all the time. He had been such a happy baby so it wasn't like him,” his mother noted.
“The doctors said it was constipation. But I knew that something was wrong. I would put him to bed and as soon as he laid down he was screaming. Now I know that it's because the tumour was pressing on his stomach.”
For three months of near constant crying, the couple talked to doctors 15 times to try to help their child.
“We didn't know what to do,” Sarah recalled of the traumatizing time. “Nothing was working to try and ease his pain. He would just be crying and upset constantly. It was so upsetting to see him like that.”
A Devastating Diagnosis
One morning last September, Ollie fell while trying to stand up. He could no longer stand on his feet. “I realised that he had lost all feeling and sensation in his legs.”
After rushing Ollie to the hospital, that’s when they finally found he had a tumor the size of an apple in his stomach, which had spread to his spine, causing the paralysis. They learned it was neuroblastoma.
“It was devastating news,” Sarah said. “We couldn't believe what we were being told. After all this time, he had been crying because the tumour had been causing him so much pain.”
The Impact of a Childhood Cancer Diagnosis on the Whole Family
The tiny cancer warrior started chemotherapy right away, which thankfully shrunk the tumor, but the paralysis remained.
“We don't know if he will ever walk. The GP surgery has apologised and said that due to Covid his cancer has been missed.”
Be Pushy, Be Your Own Advocate … Don't Settle
“Even though he can't walk, Ollie is still now such a happy little boy because he isn't in pain anymore,” the mother added, staying grateful for what is most important.
In January, Ollie was deemed to be in remission, and he is almost to the finish line.
“He is going to be ringing the end of treatment bell at the end of this month, and it will be an emotional moment for us after everything he has been through,” Sarah said. “We are so proud of him and how he's coped with it all.”
What is Neuroblastoma?
Neuroblastoma is a type of cancer that develops in neuroblasts, the immature nerve cells around the body. It can be found in the adrenal glands, abdomen, spine, chest, and neck.
Neuroblastoma almost exclusively occurs in children under the age of five. As a child grows, neuroblasts mature into nerves and fibers.
In some instances, neuroblastoma goes away on its own, while those like Ollie with an aggressive form of the disease face more of an uphill battle.
Metastization is the most significant risk for most who are diagnosed with the disease.
There are no known causes of the disease, and there is limited proof that family history makes one more or less likely to develop this form of cancer.
The symptoms will vary based on where the affected neuroblasts are in the body, but generally include:
- Lumps of tissue under the skin
- Eyeballs that protrude from the sockets (proptosis)
- Dark circles around the eyes
- Back pain
- Fever
- Unexplained weight loss
- Pain in the bones
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