Benji's Story

Latest update: April 2017

Since the last update which was December 2015, Benji has continued to do well.  He is now in Year 1 at school. He’s incredibly bright and hardworking, and thoroughly enjoys going to school. He particularly enjoys science and reading.

He has only been admitted to hospital once which was last summer (July 2016), when he had a line infection (in his portacath) and glandular fever. Other than that, he has been generally well. Obviously he has picked up a few bugs along the way but manages to fight them himself. Occasionally he becomes neutropenic and has his maintenance chemotherapy stopped to allow his body to recover.
Side effects of treatment are minimal but Benji still lacks the strength his peers have in school. He tries so hard to keep up with everyone and pushes his body to work the best it’s can!

Benji is starting Capoeira classes this week with the hope it will help build strength up in his legs now he is coming to the end of treatment.
Out of school, Benji enjoys being outside and has a keen interest in wildlife. He enjoys travelling to London to visit his auntie and also loves spending time with his cousin. He also enjoys playing on his Xbox on days where he lacks energy. Benji also loves to collect Lego and enjoys visiting Legoland for his holidays as he isn’t able to travel abroad whilst on treatment.

Benji will have his last intravenous chemotherapy and steroids in October 2017 and his last oral chemotherapy on 20th November 2017, which will mark the end of his treatment! Obviously we are very excited about this but somewhat nervous. As much as we are ready for treatment to finish, it will feel like we have lost our safety net, but we are confident that a Benji will continue to live a happy and healthy life. Benji is very excited to have his last chemo and is looking forward to having lots of overdue adventures in 2018 when he hopes he will be able to go on a plane to Lapland and a summer holiday with all his family to Italy!
Louise, April 2017

6am Saturday 13th September: Sheffield Children’s Hospital

We went to Sheffield Children’s Hospital where I was adamant we wouldn’t leave until we got to the bottom of what was causing Benji so much discomfort!

Benji was examined by a lovely doctor in A&E who found a single tiny spot on his side and suspected he could have meningitis. Because of this, he had some blood tests.

After a long wait, a doctor came to tell us that Benji was anaemic and that we were to be seen by a haematologist. We were taken to a private room – I knew it was something serious if we weren’t being seen at the bedside.

Treatment

Within two months of Benji being diagnosed an MRD test showed that he was in remission! This was the most amazing news and we all cried with happiness! Benji was responding so well to the treatment, and was proving to us just how strong and resilient he was. We were all so proud.

Leukaemia is a horrible disease that likes to come back after you enter remission. Because of this, treatment has to continue for a long time. The aim when treating leukaemia is to get it under control as quickly as possible. The next four months were very intense and the side effects of the drugs meant that Benji lost the ability to walk. He was very weak and very tired.

By the end of the first six months of treatment he had learnt to walk again. He was generally very well and managed to keep hold of his hair right up until the last week of intense treatment, at which point he was totally cancer free!

Update – starting school and doing “normal” things

Benji started school in September! He is absolutely loving it. He has learnt how to read and write. He is very eager to learn.

For the first half term of school he had just one day off sick, so health-wise he is doing great. This half term has been full of winter bugs – he has had a few more days off and some trips to the hospital, but he is generally doing well.

Last week he started something called ‘telephone maintenance’ which means he only has to be seen in clinic once a month, instead of weekly or fortnightly. He is continuing to have his daily chemo and other maintenance treatment. He has two years left of this.

Life has become quite near to normal. Benji is enjoying his childhood again! He is enjoying doing “normal” things, for example he is looking forward to spending a weekend in London next week which he used to do often before diagnosis.

Louise, December 2015