I have three children; Jo is 16, Ella is 15 and Tobey is 12. I work full time as a Veterinary Practice Manager, and was previously a veterinary nurse, so I do have a medical background – although, granted, in animals!
In October 2018 Jo went on a school trip to Germany. I missed him terribly the 5 days he was away; it was actually the first time he’d been away from us all. When he came back, I noticed he had a terrible itch. I thought it must be some sort of allergic reaction, so we made adjustments. We changed to baby washing powder, simple shower soaps and shampoos in the hope it would improve the itch. It didn’t!
We went to the GP several times who continued to think it could be dermatitis, eczema or dry skin, but none of the creams made any difference. At this point Jo had no visible skin issues apart from the marks he was making to himself by itching. As a family we were even treated for scabies!
On the evening of 30 June 2019, Jo noticed a lump in his neck and ran downstairs to ask me if I thought it was normal. I instantly knew something wasn’t right and, with the continued itching, started to think that this could be lymphoma.
I got Jo in to see the doctor the very next day. The GP thought the lump was enlarged lymph nodes due to an infection, but Jo had not been poorly at all. Blood was taken there and then; Jo’s white blood cells were slightly increased which coincided with the doctor’s original thought of an infection. Jo was prescribed antibiotics and steroids for the itching and advised he'd need an ultrasound scan if the lumps didn’t go down.
The antibiotics made no difference and Jo developed the worst rash I have ever seen about a week after the antibiotics had finished. We were seen out of hours at the hospital by a nurse and she said it looked like an antibiotic reaction but she would be keen to see what happened going forward as it was nothing she had seen before.
On the 28 July Jo went for an ultrasound as there was no change to the lump. In a message to my friends I said ‘Doc not worried – recheck 2 months’. This was the point that I thought I was probably over-reacting. Doctors thought everything was OK, my family thought everything would be OK and my work colleagues thought everything was OK. I had a word with myself and told myself to calm down!
After another doctors visit for scratching, he was prescribed antihistamines. The itching had got so bad that Jo could not sleep. He was covered in self-inflicted scratches. Strong antihistamines were having no impact and Jo had had enough. It was definitely affecting his mental health, from a happy boy, he was now quite often in tears. I called the doctor again; I shared my worry that it could be lymphoma. The doctor suggested he put us forward for an appointment with haematology to rule lymphoma out. In the meantime, Jo was prescribed more steroids.
On the 16 September Jo went for a repeat ultrasound. As there was no change in the lump, the sonographer recommended a biopsy and just over a week later we attended a haematology appointment. I asked my husband to come along; he knew I was worried. The biopsy, taken 9 days previously, revealed that Jo had Hodgkin lymphoma – blood cancer. My worst fears were confirmed.
Although I’m glad I kept pushing to get an answer to the itching, I really wish I had pushed harder, especially as I think of how much Jo has suffered with the itching. It really did cause unnecessary suffering.
The haematology team explained that as Jo was only 16 he would be best referred to the Teenage and Young Adult Ward, which turned out to be the best advice ever.
The first appointment covered scans, blood tests and fertility appointments and from then on everything moved on really quickly!
Jo was offered two chemotherapies:
- the standard treatment of six cycles of ABVD chemotherapy and possible radiotherapy afterwards; or
- a clinical trial of a more intensive chemotherapy regimen over 4 months but with a lower likelihood of needing radiotherapy.
Our medical team gave us all the details about the clinical trial but the choice was for Jo to make. We went home with leaflets and had 48 hours to decide. It was a difficult decision, and you hope you are making the right one.
We weighed up the pros and cons of the trial versus standard treatment, but what swayed the decision for Jo was the hope that by being involved in a clinical trial, he may be able to help others in the future. He’s an amazingly caring boy and I was so proud that he thought in this way.
Treatment began 26 October. On day 15 Jo began to lose his hair which was a really big thing! For him, losing his gorgeous long curls felt like losing his identity. For us, it made the cancer seem visible. His best friends arranged a facetime call and said they would shave their hair off to support him.
After two cycles of treatment with a chemo regimen called OPEA, Jo had a scan. It was clear - the cancer had gone!
Jo then went on to the next round of treatment: two cycles of a chemotherapy regimen called DECOPDAC-21. The clear scan gave Jo the lift he needed to get through and we pencilled in the date that we knew treatment would hopefully end, providing his blood counts remained stable.
The trial went really well. Jo coped amazingly with very few side effects. The care at the Teenage and Young Adult Ward has been fantastic. We have made friends for life with parents and patients going through very similar treatments to Jo.
Now treatment is complete I am already starting to forget the worst parts, but there have been really difficult days. Jo felt edgy in the beginning (due to the steroids) and Tobey got the brunt of it. It has been utterly exhausting and I have worried all the time, I still do now. I’ll be honest I have not coped very well at all.
I actually feel like a different person. It a good job my husband Glenn has held it together; I think he coped by keeping fit. My release would have been meeting up with girlfriends and talking things through. They have all been there at the end of the phone but COVID has put a different spin on things for sure. Nothing in comparison to Jo of course. We thought it was bad that he missed out on his last days of school, his prom and his GCSEs due to COVID; never did we expect cancer to be part of the mix.
I had heard the saying: ‘It is during the worst times of your life that you will get to see the true colours of the people who say they care for you’. We have certainly seen that. Our support network is bigger than we ever imagined, it is utterly heart warming! Some days the little texts or virtual hugs actually got us through the day. We will never forget that!
On 20 January 2021, Jo had his last treatment and rang the bell at the Teenage and Young Adult ward surrounded by his specialist team.
We can breathe again!
For now I will continue to work from home, at least until Jo has had his COVID vaccination. Ella and Tobey will carry on with home school (that I was delighted about to keep Jo safe) and Glenn will continue to follow super-strict social distancing at work, so we can keep safe as a family. Jo will continue to visit the hospital for blood tests, checks and tests.
I will continue to raise awareness of lymphoma and try and help other parents out there.
My take-home message from this experience is always trust your instincts!
3 March 2021