Childhood Cancer Changed Our Lives

I fell pregnant in my late 20’s with my son Ryan. It was a difficult stage in my life, I felt a bit lost at the time. I suppose having a baby gave me a sense of direction, I would now become a mother and dedicated 100% of myself to my child.

The first couple of months of having a newborn were typical, very little sleep. I had a lot of trouble breastfeeding & nurses insisted I was not latching my baby correctly. It felt so right, yet I still couldn’t feed him properly and he always seemed hungry. I always seemed full, despite feeding for a couple of hours.

His first needles came around quick and hearing him scream made me think of what a quiet baby he is usually. It was then the nurse pointed out his face, one side was screaming and the other side was doing very little. Once he stopped screaming all went back to normal.

She seemed so extremely concerned and adamant that the only thing that could cause an issue like that is neurological. We got into the doctor as she called ahead and he felt that it was all a bit overdramatic. He couldn’t get my baby to scream, so couldn’t see it for himself.

It took over a month to go to an MRI booking in Melbourne where I raised my concerns about a brain tumour. By that stage Ryans nostril was much larger then the other side, this said to me something was growing or putting pressure on the inside of his face.

The specialist was pretty certain that was not even a possibility and the hunch was he had Bells Palsy, an infection which can cause facial paralysis. I was already the kind of mother who researches everything I was told, I could not find another child with Bells Palsy at all. Seemed to me it was an adults disease.

The MRI took over 3 hours. The standard time frame is 45 minutes. I sat in the waiting room alone, something I’m not ready to write about yet – but maybe one day I will explain.

Then, a team of doctors – including the specialist I spoke to – walked past the waiting room eventually like they were on a mission. I knew it was for my son. Maybe he’s dead, maybe they called a meeting for damage control. When will they come and get me?

Eventually, I saw her, the specialist. She told me I have to come upstairs and have a talk with her. He’s dead, she’s going to tell me he is dead. “It’s ok, Ryans fine. He will wake up soon” she explained…Thank god. He is alive.

I met her in her office and her opening words were “I am so so sorry”. I knew what she meant. Ryan had a head tumor and only a few hours ago she had reassured me that would not be the diagnosis. She felt terrible and probably like an ass for making an assumption about what could be wrong with him.

In comparison to his little head, the tumor covered around 1/3 of the top of his skull. It was “intradural” which means between the skull and the skin on the outside. Not inside the brain. Good news but they had never seen anything like it. I could tell they were scared to even elaborate on the information because they themselves only had theories.

The next step was to do biopsies. These were horrible, each one worse than the next until they finally figured out a tumor diagnosis. Juvenile Xanthogranuloma was the closest possible resemblance to what is inside my head – but with slight differentiation to cases before him.

Normally JXG occurs on the outside of the skin.

Ryan has since been through Chemotherapy and all the sickness that comes with it. He has been through moments where I thought I might lose him, but I have seen others go through worse. I’m very lucky to have him.

I want to share something I have learned in all of this. When a person goes through a trauma like my son has it deeply affects them. Some people are stronger than others and come through different. But kids, kids that young can’t find reason in what happened to them.

He knows he has been through hell, felt tremendous pain and lives with a lower working memory function, temporal lobe damage and a few other issues. Ryan knows he had cancer. He does not have the actual memory, but he bears the scars and the fear that it could return.

So when he needs understanding and patience, people are reluctant to give this to him. On the outside, he looks like your average child. I strive for him to BE a normal child. Before I had Ryan I would make the assumption that any child who showed bad behavior just had shit parents.

Now, I’m looked at like I’m the shit parent. So these days I take a step back and I think to myself, what has that child gone through in his or her life to behave like that? Is that child living in a constant state of anxiety? I’m much more understanding, I have more patience (although Ryan does not agree) and I’m more inclined to keep my face out of other people’s parenting ways.

Understanding, Empathy & Patience. Something I didn’t have a lot of before.