Meet Arjun, Pediatric Ocular Melanoma

Arjun was diagnosed as a baby with #ocularmelanoma making him one of the rarest in our rare cancer community.

When asked what the hardest parts of navigating a pediatric cancer diagnosis as a family was, his mother Sumathy shared:

“I find I struggle with having a child with cancer. In my case I had a child born with a rare type of cancer. We literally had only the consultant who knew how serious Arjuns case was.

Now, my child is nearly 12 years old. Since he was born, he’s had medical intervention with having mental health issues with Autism, ADHD, sensory issues, and having a long life-time condition of living with a cancer diagnosis.

The risk of [cancer] returning is a big hold over one’s life and we struggle with knowing that everyone around is getting on with life and you’re here, praying each day is not going to have something new arrive; like a new mole, infections in socket where it’s surfaced all before.

Even though it’s my child living with the cancer, my anxiety and Arjun’s anxiety separated from one another is so sensitive. Nobody but us, as mother and son understand it. I have never left Arjun’s side for more than one night.

Arjun is now nearly 12; he still is not 100% confident in his cancer diagnosis and what comes with it all in his everyday life. Each day since medical intervention it has brought emotional blocks, we just haven’t been able to break down. Watching and not being able to find a fix on your child’s mental health with dealing with his medical issues really makes me think over drive everyday.

I don’t have anyone to support me that Arjun feels comfortable with to support his special needs, medical needs, and just in general keep him safe in this world. I book holidays for myself for a week away to gain some time away and return relaxed but take insurance knowing I can’t leave.

I have a child who was medically neglected and all I have done since the day he was born is fight for each of his breaths.

And now in all angles, I am still fighting. I am his mother I will fight till my last breath. I just wish that Arjun’s diagnosis of all areas of his cancer was not brought with anxiety. This anxiety for me an Arjun is out of control.”

Help us share to spread awareness for our pediatric omie community.

Coping with pediatric ocular melanoma as a family

Coping strategies for a family navigating pediatric cancer:

Navigating cancer as a family comes with immense challenges. Sumathy shared some of the coping strategies she has used in her family since navigating an #ocularv melanoma diagnosis since Arjun was born:

“As long as there is clear communication and routine is kept in place then all appointments days at home days out have been fine. But intervention from other parties like friends and family can can bring conflict an frustration.

As Arjun has anxiety, when I have to work, I don’t give him any instructions. I just leave it to dad and arjun and that way Arjun doesn’t worry about anything. I let dad do medication, etc.”

Of navigating appointments with an autistic child, Sumathy shared this story:

“When we last went to eye clinic Arjun knows only his consultant sees him. But since he was a baby and was investigated under general anesthesia, these other consultants who have been training under his consultant saw him in theatre. As he is older now, some come in as he’s a rare case. He’s used to being studied.

I obviously prepare Arjun for clinic and he knows the step-by-step stage from optometrists, medical nurses, eye drops and then consultant.

But this time his consultant didn’t come and get him–another consultant did! He wouldn’t respond to her. I explained that he’s autistic and he’s confident and comfortable with his consultant. So she explained she wouldn’t touch him till the regular consultant was present.
Then Dr. Sagoo brought in a load of consultants as they are learning [about his case].”

As Arjun gets older it’s gets easier. In front of them all I said to Arjun, “one day when Professor Sagoo retires one of these lovely ladies or gentlemen will look after you.” So Arjun smiled and said that was okay.”

Growing up with cancer is a whole other ball game. Please share to help spread awareness for ocular melanoma in our pediatric community and please ensure children in your life have comprehensive eye exams.