Jayden was 11 year old when in February 2022 he was diagnosed with anaplastic large cell lymphoma.
His mum Irena shares his story...
One winter morning in November 2021, as we were getting ready for school, Jayden shouted from his room: “Mummy, I have a joint coming out of my body”. I asked him to hurry up and told him I would look at it later. He was referring to a lump that he had found on his body.
A week later my husband asked me to have another look at the lump, as Jayden kept saying it hurt when he pressed on it. It was now the beginning of December 2021 and Jayden had no other symptoms. However, this and the size of the lump alerted me to ring the GP surgery on 13th December, and that afternoon he was examined by a nurse practitioner, who then wanted him to be seen by his GP.
A week later the GP confirmed it was a reactive lymph node and requested an ultrasound scan. On 30 December, Jayden had the scan and a chest Xray, and it wasn’t until the 12th January 2022, he was seen by Paediatrician in Musgrove Park Hospital in Taunton. After examining Jayden, the Paediatrician said that they would need to do further checks on the lump.
A few days later we had a phone call from a surgeon from Bristol children’s hospital, who said they would like to remove the lump the following week. The lump had grown from 2cm to 4.5 cm in 3 weeks! So, on the 20th January, Jayden had it all removed and after 2 gruelling weeks of waiting, we were finally informed that Jayden, who was 11 at the time, had ALCL (anaplastic large T cell lymphoma).
In an instant, Jayden’s life suddenly changed. He was very fit and strong from training every day, and suddenly had to put on hold various sporting activities he was involved in. These included his participation in the Somerset County Cricket Club Pathway programme, his grading for a Taekwondo black belt, training with ITF England, playing for North Curry Youth Cricket Club, Galmington Dragons Football Club, and Taunton Eagles Under 11 rugby. In addition to this, he had to suspend grading for Grade Five acoustic guitar, not to mention his academic and Scouting involvements.
On 7th February Jayden commenced the treatment for ALCL as per the protocol from the ALCL trial in 1999. After the 3rd cycle of chemo, we were told he was in remission, but the treatment had to continue to ensure that even the smallest chance of the cancer being present was diminished. On 7th June 2022, the last chemo dose finished, and we were discharged the following day.
While Jayden remained as active as possible throughout the treatment, he suffered some side effects such as mucositis and neutropenic infections. He also developed blood clots on his right atrium and had to have twice a day injection for 6 months to dissolve the clots.
Jayden couldn’t do any contact sports until this treatment finished, but in November 2022, he was back to all the sports he did before the cancer diagnosis. In fact, a few weeks after he stopped the injections, he attended his first Taekwondo competition since the diagnosis and won gold medal in patterns and silver in sparing.
While on treatment, Jayden went to school more often than anyone expected, and he managed to do all his SATs! He even asked to postpone his chemo twice - firstly, to accommodate the SATs and secondly, to play a game of cricket with his team just before the last cycle of chemo. He did however have to stop in the middle of the game so his father could adjust his Hickman line in place and secure it with more dressings.
Jayden went through 6 gruelling cycles of intensive chemotherapy. Every time obstacles appeared, he just kept going and never gave up!
The side effects of the chemo affected him differently at each cycle and I still cannot understand why kinder drugs are not available for ALCL treatment, especially knowing there are new targeted therapies being introduced for other cancers. It transpired that there is not enough funding for this type of cancer to support research due to the rarity of the cancer.
Shortly after Jayden started the treatment, we decided to set up a fundraiser to help charities supporting us along the way. We raised just over £7000 and reached our target of £5000 in 3 days! Just before Christmas we allocated most of the funds but decided to set up this Special Named Fund and restrict some of the fundraising toward it. We want to ensure more funding is put toward research into ALCL and ultimately see kinder treatments being offered to all children diagnosed with this type of cancer.
We chose CCLG as we found out the charity has already helped other families to set up funds and support vital research. Jayden's logo features these mandarin characters 强度 – These characters mean strength in Mandarin. Jayden studies Mandarin in secondary school and wanted to use them! With his favourite colour being red.
We were also very fortunate to have had the support from our local community. People have been so generous, and this journey has taught us the importance of giving - there is always a smile to be given or just a kind gesture. We now want to give back to help other children and their families.
Make a donation to #TeamJayden
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Open an online fundraising page for #TeamJayden
Set up a regular Direct Debit donation to #TeamJayden
Fundraising pages
Research projects funded
Determining the best approach to treat children with relapsed anaplastic large cell lymphoma.
Text CCLGJAYDEN to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for #TeamJayden so that your donation is allocated to the correct fund.