When Kieran was diagnosed, his family were told he was lucky to have such a localised tumour. However, despite surgery and chemotherapy, the cancer spread and was terminal. Kieran passed away at home surrounded by his family on 23rd June 2017 aged 18. To continue his dream of increasing awareness and decreasing diagnosis times, his family has been raising funds for research into Ewing sarcoma and all childhood cancers. Here, they share his story...
Kieran was diagnosed with Ewings Sarcoma on 29th October 2010. We were told we were very lucky as Kierans tumour was only located his left tibia. After diagnosis, Kieran started chemotherapy the following day. He went from being a very active child who was never in the house to a boy who had a full leg cast on and was in a wheelchair.
He had 5 months of intensive chemotherapy where although his tumour was completely dead it hadnt shrunk enough to save his leg. On 31st March 2011, he had his left leg amputated through the knee. Two weeks later he restarted his maintenance form of chemotherapy. This chemo lasted a further 7 months and on 3rd October 2011 he was considered cancer-free.
Because Kieran had localised disease we were told the chance of his cancer returning was low and that he had a 70% chance of being alive in 5 years.
Kieran started his rehabilitation to learn to walk again. This was a painful process as he hadnt walked for over a year and his muscles had wasted away so he had to build his strength up again. He started to do Sports Acro gymnastics to help build his strength up as he was selected to carry the Olympic Torch when it came through our town. He found he had a flair for it and started to compete locally then after only 1 year he had done enough to qualify for the NDP National Championships.
8 days before this competition we learnt his cancer had returned. He delayed his treatment so he could compete and he won GOLD. With the 3rd highest score of the day and this included mainstream competitors.
Kieran treatment was different from the first time and was more intense. He had 6 cycles of chemotherapy, part of his left lung removed and a stem cell transplant. The stem cell transplant is similar to a bone marrow transplant but he received his own cells back instead of donor cells. This treatment was more intense than the previous one and only took 6 months.
Since he had reached the highest he could with his gymnastics he decided to change to athletics. So while on his chemo he did the mini Great North Run and the Richard Whitehead 5km Fun Run. This was also 2 weeks after having part of his lung removed.
Kieran isn't a quitter and wanted to prove just how strong oncology kids are. Even if they are slowly being poisoned by chemotherapy to save them.
He carried on training and 2 months after completing his treatment he started to train with the Darlington Harriers and focused on getting back to his physical fitness.
The chemo this time had taken a lot out of him taking over 2 years to start developing and making progress with his sport. He is now classified as a T42 sprinter and was aiming for Tokyo 2020 Paralympics. Kieran represented his country at the Brazilian Paralympic School games in 2015 winning Gold.
Unfortunately at a routine chest x-ray, we learnt that his cancer Ewings Sarcoma had returned and it was now around his heart and lung.
There is nothing else to be done. Kieran is now terminal.
Kieran decided against having any further treatment as it will not be curative and he didn't want to spend the time he has left ill and in hospital, he wants to focus on raising awareness of Ewings Sarcoma and improving the time it takes to diagnosis a child with cancer.
If you remember before I said to remember that Kieran had a 70% chance of being alive in 5 years well it is now 5 years since he finished treatment the first time but Kieran is now terminal. 5-year survival figures do not mean that they are cured it means that they are alive. For ones like Kieran that are still are here, it looks good in statistics but it is not good results 70% are alive but are they still living with the recurrent disease?
For this Kieran is working with the CCLG to meet these aims. It is too late for Kieran but let's make his dream a reality so more children are diagnosed earlier and hopefully have a better outcome.
Kieran passed away at home surrounded by his family on 23rd June 2017 aged 18. He survived 36 weeks and he's forever missed and as a family, we will continue his Legacy.
Make a donation to Kieran Maxwell Legacy
Open an online fundraising page for Kieran Maxwell Legacy
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Text CCLG 5 KIERAN to 70300 to donate £5.
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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 Kieran Maxwell Legacy so that your donation is allocated to the correct fund.