My daughter, Anais, wasn’t eating well at the end of last year; she was complaining of a sore tummy and heavy bloating. So, we took her to a GP touched her tummy and said, “Yep, it looks like you have a bowel blockage, but let’s do an X-ray and some blood tests and take it from there.”
As we expected, the X-ray showed a blockage, but at that time, around end of October, the blood tests were absolutely fine. She was prescribed Movicol, which is a laxative. However, things weren’t improving; the pain and the uncomfortable feeling were still there, and she couldn’t zip up her skirt for school because of the bloating. I thought, “Well, this is just ridiculous. I might organise a colonic irrigation”. So, we had three sessions, then we went back to the GP, who said she needed to take Movicol, three times a day.
One night in mid-November, she was in so much pain we went to the emergency room and waited for five hours. Finally, a paediatrician touched her tummy and said, “Yeah, I don’t see anything to be worried about.” She printed out some paperwork about constipation and said, “Just read that and go home.” The whole time I was thinking, this isn’t right.
A few days later, she had a fever and terrible headache. She said her eyes were burning and it felt like a migraine, but worse. So, we went to another GP and did another blood test; this time the results were worrisome.
The GP suggested we go straight to emergency and thank God a paediatric oncologist immediately picked up that something was wrong. She said it didn’t look like constipation, so she did an ultrasound and discovered two tumours. One was 23 centimetres on her left ovary, the size of a football, the other one was a smaller one measuring five centimetres.
She was admitted to hospital straight away and sent to do an MRI, which confirmed the diagnosis: a teratoma tumour. And from then onwards, I felt like I was in a different parallel galaxy.
We met her medical “team”; the paediatric oncologist, the surgeon and the fertility doctor, because removing the tumour meant removing the ovary. The surgery was scheduled for 6th December; the tumour was so big that the surgeon had to deflate and shrink it by very carefully draining the fluid, in order to remove it without a major scar.
Thankfully, the surgery went really well, and she recovered very quickly. After that came a series of pathology reports and tests, and in our minds, it was chemo next, just to make sure everything is taken care of. But after waiting quite a long time to get the results the oncologist said, “Look, all the reports are saying it’s Stage One Ovarian Cancer, so she’s in a very low-risk category.” She recommended not doing any chemotherapy.
The next steps
All we needed to do were weekly blood tests, just to check the tumour markers. It was the best-case scenario. We were over the moon about that diagnosis, but Anais was angry. She had prepared herself to have chemo and didn’t want to go through a weekly test.
She asked, “What does that mean? Am I going to have to wait for results each week? And what if in the middle of my year 10 next year, and they discovered that it’s back or has spread?” The oncologist tried to explain to her that you just don’t do chemo for the sake of doing chemo. “You do chemo if there is a really, really good reason because we’re injecting poison in you,” she said.
We started doing the weekly blood test – that was over the Christmas and New Year’s period – three tests all up but we hadn’t heard anything from the doctor about results. Around mid-January, my ex-husband, John, got a phone call telling us that the markers were rising, and had been rising from week to week. That meant that there was no other option; chemo was necessary.
I was at work when John called me, and I collapsed. All I wanted was to just go home and sleep, so this could all be a bad dream. I just couldn’t believe that this was happening again. We didn’t know what to do about telling Anais, she was on holiday with friends, but the doctor asked us to come in for tests and a new MRI of her entire body to check that there was no mass or no other tumours that they had missed. So the dilemma was, do we tell her nothing and wait for her to come back, or should we pre-warn her that we have to go to hospital as soon as she gets back.
We decided to go and see her, because she’s that type of child, she doesn’t like not knowing what’s going on. She was very stoic as per usual, and she just asked the right questions. She said, “Oh, so my blood tests were not good? What were the numbers? What was the number the week before?” She wanted to know all of the details.
After her holiday we went to do the MRI. There was no mass, which was a good result, but they scheduled her for kidney tests and also chemo. She’s done the first round already; the plan is to have three rounds and then reassess. Each round she has to take different drugs over three consecutive days. She will lose her hair and have mouth ulcers and the usual affects you hear about. But at the moment, touch wood, she’s fine.
Anais did tell her close friends at school; she is very open about her journey with them. She wants to continue her normal teenage life… She’s cheeky, like that. She is hitting the buttons of her parents, doing the things that a normal teenager does as well!
Throughout this process, I’ve gone through moments of feeling guilty because I just wasn’t attentive enough to her pain in the beginning. I just thought, she’s going to be fine. And for that, I feel very guilty because she had started complaining weeks before I took her to a doctor.
But you know, that original GP, my doctor, called me to apologise for not picking up the tumour. She said, “I did the blood test. I did the X-ray. But she is only 14 with no family history of cancer. I would have never, ever thought of a tumour.” So, I’ve learned that if you have an instinct that something isn’t right, the knowledge or really just the awareness that something is wrong, you need to speak up with doctors and medical professionals. It’s the only way.