She was diagnosed just before her seventh birthday.
Gaby’s story begins when we were on a family holiday in Majorca. I spotted a big lump in her neck but as she was otherwise well, didn’t worry.
On our return, I took her to the GP, who, when it didn’t resolve, referred her to our local hospital in Wrexham.
There she was treated for another nine months for various things but the lump still did not go! After this time, I asked for a biopsy, which I’m sure should have been done earlier, but I was dismissed as a neurotic mother!
The biopsy showed papillary carcinoma of the thyroid. I don’t know who was more shocked, me, or the doctor.
She was immediately referred to Alder Hey who sent her home again as they said she was ‘too well to have this’ but agreed to review the samples.
A week later, four days before her seventh birthday we were back! She was booked in for a thyroidectomy, scheduled for 30th December to bypass Christmas and her birthday.
We were told it would take about four hours. She was actually in theatre for eight . . . the longest time of my life and had a radical neck dissection with removal of 50 infected nodes.
She subsequently developed a seroma and an infection and was in hospital for three weeks. She has an 11 inch scar on her neck.
We were told that it was not possible to do RAI at Alder Hey so, in April, we were off to Christies in Manchester for the first of her RAIs.
The procedure was easy, she just swallowed the iodine in some juice. But it made her very sick and she did not tolerate being hypothyroid very well.
So the next dose, for a scan, was done with thyrogen which made her even sicker!! We have just finished her third full RAI, for metastases, following an elevation in her thyroglobulin levels. She will now be monitored monthly for the meantime.
Gaby has been cheerful throughout, taking it all in her stride, and enjoying things that she might have otherwise not done. She is often very tired and has unexplained tummy pains a lot, which she takes medication for.
She manages to go to school and join in with everything but is totally exhausted at the end of the day. At the moment her thyroxine levels are high to suppress TSH but hopefully this can be titrated very soon.
As you can imagine, along this journey, I have accumulated a lot of knowledge and information. Not just about the disease but about coping, about hospitals, about support. It’s a whole new world!!
Life will never be the same again, it changes your total outlook on what is important. And you certainly learn to juggle! Gaby has two sisters at home, Catherine who is now 13 and Emma, 11. Both of them have needed, and given, a lot of support.
If any of us can make anyone else’s journey along this path easier, we will gladly do so. Butterfly has been a great source of information, and being able to speak to someone in a similar situation, helped immensely.