Etty's Blog

Mother of Survivor

When my world was turned upside down

Three healthy, playful young children. My world was blissful.

My youngest child Doron aged 6 started vomiting in the mornings, cutting his fringe (trying to remove the headache I suppose) and kept falling without involuntarily putting his hands out. He started rapidly losing weight despite eating normally and seemed generally quite lethargic. The paediatrician, that we saw several times, thought he must have a food allergy so he eliminated certain foods for awhile , and when Doron carried on walking in an unstable way, he claimed Doron was “seeking attention and acting”. So I changed to another paediatrician.

Some time later, the diagnosis of a brain tumour – a Medulablastoma - was confirmed at Great Ormond Street Hospital.

The tumour was completely removed in Doron’s operation, which was obviously a huge relief. However, Doron could not speak, swallow, walk or see (focus) properly.

Doctors told me that this reaction was most unusual and hopefully his condition should improve. It took 6-8 months of intensive physio and speech therapy for him to build up strength and speech again to base level.

Being in and out of hospital for a year was somehow easier. We were involved with day-to-day treatment, isolation (due to low platelets) and intensive Chemo and Radiotherapy.

We had a routine and all our thoughts were focused on surviving. Doron and me were sort of “institutionalised” .

Family and friends brought food, games, spent time with Doron and showed their support.

2 years later at the age of 8, Doron had a recurrence.  A tumour in the frontal lobe.

I noticed behaviour changes for example when Doron was aggressive to his Dr (Doron was always a very gentle child).

Doron was operated in England where they removed the tumour and underwent experimental treatment in New York. When we came back he was treated with more radiation.

He was also eventually treated with growth hormones, which he was advised against originally.The growth hormones treatment was too late and left Doron short in height, angry and saddened by it, as he missed out on a few inches of potential growth which does affect his social confidence.

Doron went back to school.  My life revolved full time around him and my other two children. I was terrified to delegate, or to let go. I felt so guilty that it took a while to diagnose him and that I was not on top of it with regards to timing of growth hormones. In depth knowledge ,as parents ,is key in all treatments. I gained a lot of “tricks” of overcoming issues by talking to friends, professional and reading as much as possible, however no-one can really know the best strategies to use unless they are involved in the situation. 

I embarked on a lot of research as to how to improve his quality of life after treatment, being surrounded by academics and high achievers added more pressure, but again, I had to be decisive on what was best for Doron rather than on how he will measure up to others. Now that Doron is older he understands the importance of this decision.

My marriage was rocky long before Doron was diagnosed so the hardship at home after Doron’s treatment just created more of a divide between me and my husband. A challenging situation, like this one ,puts any marriage to the test and without a strong foundation it is inevitable to fail.

Raising a family on your own is and was tough, but when you add into the mix a sick child, it makes it much more of a challenge.

I tried not to cling to them for me.  Letting go, especially for the first child leaving home, was very hard. Allon in a way at the time replaced a father figure for Doron. Followed shortly by Talia whom was also very protective of Doron and me.

I fought for normality and sent them all (including Doron) away to uni. I encouraged them to travel and to take a gap year.

Doron achieved excellent GCSE’s, A levels and attended university in Birmingham, taking away a 2.1 Bsc (Hon result. )

It all sounds very normal, so what’s the worry?

Doron went on a Gap year. Which I think emotionally was the most challenging for me. He realised the damage the treatment and in particular the missing growth hormone treatment had caused.

Doron is now 30.

He is independent, lives on his own and manages his owns day-to-day life, accounts, etc.

He holds a full time job as a teaching assistant in a special needs school that he feels that he can contribute some of the qualities picked up from his own experiences.

Over the years in Doron’s education he has adopted a rather philosophical viewpoint. Society in general doesn’t really know how to react to differences/ disability, with new Equality legislation and education this is changing. However, Doron’s approach is that it is easier to change the way he views societies reaction towards him than changing the view of society as a whole. Doron has always been very strong and determined to succeed.

In fact he is the one who gives me strength and courage.

Investing in Doron’s positive approach to life paid back well.