Jenny’s Story

My name is Jenny, I live in Leeds. I am married to Paul and have three children, Chloe is 11, Russ is nine and my youngest, Thomas, who is five.

When Tom was around 2½ I noticed one morning that he had a lump on his neck. We took him to A&E who said they thought he had an infection.

I didn’t believe them and wasn’t happy so I took Tom to my GP who has a special interest in ENT problems.

He referred him for tests and after a long six months of scans, ultrasounds and needle biopsy they were still unsure.

The lumps were affecting his breathing, so they went on to remove them along with his thyroid gland, there were three lumps in total, each around the size of a golf ball, these were sent off for biopsy.

The operation was okay, although it lasted around five hours which was longer than I was told.

When I saw him after his operation, the incision seemed huge, it extended fully across his neck, around five inches long, it was one continuous stitch with a bead on each end.

We were in hospital for around four days to monitor his calcium levels but luckily they were fine and Tom went onto thyroxine a couple of days later.

The results of the biopsy came through a few weeks later, papillary thyroid carcinoma.

His doctor was more shocked than we were as he had never come across the disease in a child of Tom’s age. This news came a couple of days after Tom’s third birthday.

We were then told that he would have to have RAI and be in isolation, the only facility which could take a child so young was 50 miles away at Christie Hospital in Manchester.

So Tom came off his thyroxine to go on T3 which seemed to be okay for him, better than the T4. Then a few weeks before we were due to go to Christie’s he had to come off his medication altogether.

He quickly became tired and lethargic, sleeping for hours during the day but we knew it was only short-term. We also decided to put Tom on the low iodine diet, which was okay.

The main thing was cutting out the dairy foods but we just read the labels on products religiously and did okay.

The RAI was administered in liquid form by a tube which had to be put into Tom’s throat, he was sedated at the time.

The isolation was the most horrendous thing I have had to go through as a parent, not being able to comfort my child was terrible.

They kept Tom sedated for the first few days whilst the radioactivity was at its highest which made it easier for us and the nurses who cared for him.

The nurses had to be there round the clock as we were not allowed to stay with him in the room, our own room was on another wing.

Before we came home he had a scan to check if the RAI had done its job and there was only a little glow by then, and six months later he had another scan which was clear.

To prepare for this he had to come off his thyroxine again which was even harder for him this time as he had no thyroid function at all by then.

Tom is five years old now and is in full-time school, we are just about to go onto six-monthly checkups. He is taking thyroxine every day although it has taken a bit of juggling to get the correct dosage.

It is hard not to wrap him up in cotton wool but he has a passion for rugby and hopefully he will have his first friendly match in a few months! We will never forget what we have gone through but is gets easier as time passes.

During the time Tom was poorly I spent a lot of time on the internet trying to find help, support and advice to make it a little easier for us.

I was pointed in the direction of Butterfly and the information and support they offered helped tremendously.

A while later I discovered they were seeking support contacts for other patients and I contacted Kate about this.

I was ‘over the moon’ to be able to do this, it is such a wonderful idea and it helped me immensely when I needed it. When you have a sick child (or anyone close to you), all you want to do is help them however you can.

For me, the best way to do this was to gather as much of the right information as possible, I think the best way of doing this is to speak to someone who has gone through the same thing.

If our journey can help someone else and make it a little easier, then that’s what counts!

Jenny Barton
January 2008