Lenny's non-hodgkin lymphoma symptoms story

Lenny was diagnosed with T-Cell Non-Hodgkin Lymphoma when he was eight years old in 2018. His dad Daren shares their story.

How it all started On the 10 March 2018, our son Lenny walked into the kitchen at home and we noticed a small lump had come up on his neck. Within a week a second lump appeared on the other side. Over the next four to five weeks, we took him to the GP to be told each of the following – that it was a swollen gland, he had a virus and then glandular fever. Lenny became very lethargic and was starting to fall asleep at school. His snoring at bedtime became very loud and he lost weight over this period. Finally we were rushed to hospital, that day being Wednesday 25 April 2018. We received the heart-breaking news that our Lenny, who was eight years old at the time, had malignant lumps on his neck.

The cancer diagnosis

We were transported to a children’s hospital in London on the 26 April and on the 27 of April 2018, we were told that our Lenny has been diagnosed with stage 3 T-cell Non-Hodgkin Lymphoma, which is a cancer that attacks the lymph nodes. Lenny had large cancerous lumps on each side of his neck, a mass on his chest and some on his kidneys. On the 27 April 2018, our son Lenny had an operation to attach lines to his chest in order that chemotherapy treatment could be administered. Lenny was at the children’s hospital for 11 days, beginning the early stages of a three and a half year chemotherapy treatment plan. Lenny underwent intensive treatment for the first eight months as an outpatient and then a period of what they call maintenance for two and three quarter years of less intensive chemotherapy. This was a long journey for Lenny as well as his mum and me. We remember receiving amazing news early into Lenny’s treatment. On 11 May 2018, an x-ray revealed that the cancer on Lenny’s chest had completely cleared and both tumours on his neck were not visible, which was encouraging.

After a year, Lenny could return to school part time During this time, Lenny required 24-hour care during the intense period of this three and a half year plan, which did taper off as the time went on. Sometimes Lenny had to be carried upstairs to bed and even now still suffers some anxiety problems. Lenny did return to school after about a year with short periods of school time. Lenny’s mum returned to work in her part-time estate agency role, working from home.

Lenny’s life before his cancer diagnosis Prior to diagnosis, Lenny was a typical eight year old boy with a brilliant fun sense of humour. He loved to pull silly faces and cracked up at the mention of poo. We loved nothing more than having a conversation that makes absolutely no sense while seeing who could pull the silliest of faces. We could be heard sitting chatting about history, cars or footie. Lenny is a very popular, sociable boy with loads of friends. He loves anything to do with sport, especially football. He’s a striker for a local team and attends after school footie and multi sports clubs. One of his proudest achievements was being titled the fastest boy in his year as well as coming very close to winning the district trials only a few months prior to diagnosis. In fact, we’ve always called him Forest Gump because, since he could walk, he’s always run everywhere.

Our son is the life and soul of our family Lenny is like a little jumping bean who literally can’t sit still. He’ll choose to cartwheel or

run and jump instead of just sensibly walking, much to the amusement of people walking past. The lack of energy when Lenny was diagnosed was very frustrating for him. The only thing that keeps Lenny still and quiet is his beloved Xbox. Lenny loves nothing more than a sleepover with his cousins or at a friend’s, play dates, days out, sports camps – just anything which means fun. He’s a very loving boy who still sleeps with his cuddles and ted and will climb up still onto either mine or Jill’s lap for kisses and a cuddle, showering you with love – but as long as there’s no one about to see!

The time he lost his hair He’s our blonde hair, blue eyed, handsome headstrong little boy, who is always on the lookout for mischief, and we couldn’t be prouder. Unfortunately, the blond hair left us which he found most upsetting after two periods of hair loss during the early stages of treatment. His hair came back a mousey colour, which is what we expected at some stage in his life as his mum and I both were blond at a young age. We were just all upset that his blond locks went because of this awful disease. This was a tough road ahead for Lenny, as well as his mum and I, but we stayed positive throughout the three and a half years – well, as best as you can.

It’s been a tough road for all of us Lenny’s treatment was shared also with another hospital during the maintenance period. We had monthly visits to the hospital for chemotherapy treatment and then three monthly visits to a children’s hospital in London for lumber punctures – he had a total of 26. What a hero! There was a period during year one of treatment that Lenny would spike a temperature and would need to quarantine for 48 hours at the hospital. This was expected but nonetheless equally scary at times. It’s been a tough road, not only for Lenny but us as a family unit. This awful disease affects the entire family and did test our resolve.

Lenny finally rang the end of treatment bell

Thankfully, we are all still here and our lovely son Lenny, who is now 11 years of age and has now started seniors, rang the end of treatment bell on Sunday 29 August 2021. We are so so proud of him and know that our son Lenny will make his mum and me very proud, as we feel that with Lenny’s strength and will power gained through this experience will stand him in good stead as he gets older.

Story told by Daren, Lenny’s dad and mum, March 2022