A family’s journey of heartbreak…

Like many new parents, I remember counting my daughters toes and fingers when she was born and feeling grateful that everything appeared perfect! As she grew, she had the normal colds but nothing major. I was lucky.

Unfortunately, not all parents are so lucky… and for someone who had a healthy child, I can’t understand how heartbreaking it is to have a child who is seriously ill.

I can’t understand the emotional roller coaster that these families endure.

This story is one family’s journey on how they coped with the heartbreak and emotional helplessness of having a child with cancer (family name has been withheld for privacy reasons).


Our Journey with Retinoblastoma…

A lot of clinical information pertaining to retinoblastoma can be found easily; however, not many sites would really prepare you as to what you might have to face or go through to fight against this cancer. My motive is to share some of my experience that my family underwent, so that others get benefited from it.

KushagraMy child’s name is Kushagra and when he was 1 and half year old he was like any other toddler, playful, cuddly and big bundle of joy for everyone. When I came to know that something so beautiful is blemished with cancer, my heart broke down and soul took a nosedive and it took me time to get up and fight back for my child.

Taking our son for regular check ups to the paediatrician

Like any parent we took him to our local paediatrician for inoculation and regular health check-up. Everything was going well and there appeared nothing wrong, no visible symptoms, except an occasional fever and tummy ache.

The photographs with white circle

Nothing seemed out place but for the infrequent photographs where we could see a white circle in one of his eyes we brushed it aside thinking it was kind of lighting issue or photographic mistake while the camera’s flash was turned on. Until one of our relatives suggested we take him to an ophthalmologist just to check it out why this was happening.

Our worst nightmare comes true

We visited an ophthalmologist who checked my child’s eyes after dilating his pupils and confirmed to us that he suspects that its retinoblastoma, a type of cancer. The doctor immediately referred us to a specialist who dealt with retinoblastoma cases, specifically.

Post various diagnosis tests like ultrasound, CT scan and examination under pupil dilation, the specialist ophthalmologist confirmed that my son had retinoblastoma and he suggested us two options: either to remove one of the eyes of my child or undertake treatment which involved six sessions of chemotherapy and numerous laser therapy sessions.

My wife and I thought about which option was best for our child and how should we chose to fight for his vision and life.

Regret with earlier paediatrician who could have saved enormous hardships

Our earlier paediatrician whom we had gone regularly for inoculation and health check ups of our child did not conduct a red reflex test, through which could any issues with eyes of my child could have been easily caught and possibly save us from undergoing a lot of hardships and fewer chemotherapy sessions, which we had to administer to our child due to the size and spread of the tumour.

Therefore, it is imperative that you urge your paediatrician to conduct a red eye reflex examination while visiting your paediatrician so that he or she can trace out the early signs of retinoblastoma and other eye issues like cataract and glaucoma. Don’t allow any carelessness in this matter. Don’t fluctuate from opinion to opinion, from plan to plan, and don’t veer like a weather-cock to every point of the compass. First get proper consultation and proper examinations. And, then execute the treatment program very firmly.

Treatment with specialist team of doctors

Our son’s treatment started with a team of specialist doctors comprising of an oncologist to manage the chemotherapy routines, an ophthalmologist and a paediatrician (changed from the earlier one) to manage any post treatment side effects.

Chemotherapy is hard for any adult but somehow children cope better as they are not aware of the seriousness of the disease and they do not have any mental conditioning or blocks about it.

Finally cured now but follow up is still required

After 6 sessions of tough chemotherapy sessions which required to be given intravenously and many laser therapy sessions to examine our son’s eyes under anaesthesia, and after three years of long battle, finally he was cured.

Now, my son is 7 years old and at the moment, he is free from retinoblastoma; however, in every three months he has to be examined by the ophthalmologist to check whether the cancer is reoccurring or not (which will last for another 2 – 5 years.)

Remember that Retinoblastoma is a curable cancer with over 90% cure rate if diagnosed properly and treated early.

Therefore, you should be mentally tough and hope for the best during your fight against retinoblastoma. I am hopeful that you will be able to retrieve the situation.

Welcome to KidsEyetumor.com dedicated to Retinoblastoma

The aim of this site is to spread awareness about Retinoblastoma, and make you prepared on how to tackle this medical condition. It is a type of cancer that occurs in the eyes of young children. I hope that you become well-aware about Retinoblastoma, and the information given here makes you more vigilant about symptoms of this deadly illness.

There can never be any fully secure guarding system against any future shocks; however, there must be a beforehand preparation and awareness related to it so that the impact of the shock lessens.