Lewis C
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Why I'm asking you to hold hands with someone to help beat blood cancer together

Lewis C
Posted by
21 May 2015

In June 2012 my world was rocked when my Mum was diagnosed with acute lymphoblastic leukaemia. It came as a real shock to me, my family and friends as she's always been so healthy and active! Nevertheless once she came to terms with the illness my mum saw it as a challenge that she would have to overcome.  So the mission to get mum better was on...

Back when I was organising Swim4Leukaemia for mum and Leukaemia & Lymphoma Research, I set myself a target of massively raising awareness for the charity and also raising £100,000. I would love to hit that target for my mum and the charity and have been thinking long and hard about how I can continue to do just that. I have come up with the idea of a Selfie Campaign whereby people take a selfie of themselves holding hands in a show of support and togetherness for the charity and to help #BeatBloodCancerTogether.

How you can get involved:

1 - Take a selfie with yourself & someone else whilst holding hands and holding your hands up  in the selfie, the holding of hands is to symbolise 'together' and also a show of support and strength!

2 - Upload it to as many social media outlets as you can :)

3 - Nominate 3 others to take part & help #beatbloodcancertogether

4 - Donate via justgiving or by texting BBCT99 and your £amount to 70070

I would love for this to go worldwide and raise a great deal of money and awareness for a fantastic charity that have helped my mum fight this terrible illness for so long, and in the hope that one day someone somewhere will find a way to cure this illness so that families across the world don't have to go through the pain and suffering of seeing a loved go through what I have seen my mum go through.

Mums story...

Mum was admitted into hospital and onto a course of treatment which involved mainly chemotherapy - she initially did 5 blocks of treatment lasting from July to December 2012. Unfortunately at the end of this block my mum got some more bad news from the doctors that the chemotherapy wasn't effective. The doctors also decided that mum’s only chance was if she underwent a bone marrow transplant, but these don't just happen overnight and it can take up to 6 months to find a donor. Sometimes you may never find matching bone marrow for the patient, which could be fatal. With all this in mind, the race was on to find a bone marrow donor for mum. With no more treatment available to her she was eventually let out of hospital after 6 long months of tests and treatment at 4pm on Christmas Eve! Certainly will remain a Christmas to remember!

The New Year brought some good news and mum was given a life line and offered the opportunity to take part in a clinical trial with a new drug Blinatumomab... But still no news of a successful donor match!

The trial carried with it some significant risks, mainly as the trial drug wasn't tried and tested, however they were risks that my parents thought were worth taking, and with a lot of faith, a big helping of trust coupled with good luck, my mum enrolled and signed up for the trial. Mum conducted 2 cycles of the treatment each of 6 weeks duration. By taking part in the trial she was able to undertake a lifestyle at home rather than in hospital albeit a little restricted, however the trial drug was much less intrusive than chemotherapy. After both cycles my mum was considered to be in remission, it had worked much to our relief, the cancer cells were under control. During her treatment on the trial drug my mum got some more good news; they had found her a donor and the process of the bone marrow transplant took place in June 2013.

Mum had to go through the process of a bone marrow transplant as without it, the cancer cells would just keep on coming back. Blinatumomab had got mum to the point where the cancer cells were under control and manageable and it was safe enough to start the process of the bone marrow transplant. Without access to the clinical trial the road for my mum would have been much more difficult and potentially fatal for her. This was great news for us all, however my mum still had a long way to go before she can say she has beaten the cancer.

To start the bone marrow transplant she had to spend 6 weeks in isolation in hospital and was only allowed 2 separate visitors for the whole time. Within this time they had to strip away my mums existing bone marrow by a series of treatments, but again mum beat the odds and got through it. The main risk from the transplant was Graft Versus Host disease (GVHD), where the new bone marrow from the donor wants to reject Mum’s main organs. Fortunately there weren’t major reactions and after another couple of months in hospital building my mum back up to strength she was let hope to recover further.

At 100 days from the transplant the doctors did a bone marrow test to see if the leukaemia had been eradicated. We got the results back and again I felt like my world had been turned upside down; just as everything was looking up the test showed that mum still had Leukaemia! The results showed she still had some refractory cells (cells that are not responding to treatment) in her system, and unfortunately the new bone marrow wasn't strong enough to attack the refractory cells. So we dusted ourselves off, picked mum back up and remained positive as a family that we would see this through. Mum went back into hospital again on another course of treatment but unfortunately unable to go back onto the Blinatumomab (these trials really are so hard to get onto and it's so important that I raise as much as I can so people can get the treatment they need). After her treatment to try and get rid of the refractory cells ended, she was given a fresh set of mature cells that fortunately were strong enough and mature enough to attack any further cells.

Mum was still fighting 18 Months on from being diagnosed. This is a long time and in this time the amount of money spent on treatments, tests and all sorts has to be covered by someone...

This got me thinking, with that in my mind I decided that I wanted to raise money for the research and care of people with leukaemia and also to raise awareness about what it takes to treat such an illness. I wanted to do my bit so that more people could have access to new drugs or clinical trials. Currently only 6% of blood cancer patients have access to clinical trials which is a really low figure. For some patients, like in my mum’s case, the Clinical Trial is sometimes the last option - if my mum wasn't in that 6% she might not be with us today.

So I thought what could I do to raise money for charity, being a GB swimmer, swimming as always been a massive part of my life and my family's life, with my mum having a massive part to play in me getting to the position that I am in today, I thought it would be fitting if the event I organised was related to swimming. I have always had big dreams and love a challenge and with this I was no different. I decided that I wanted to break a Guinness World Record (100 x 100 relay) in aid of charity, in particular Leukaemia & Lymphoma Research.

The Record attempt took place on the 1st of February 2014 at Ponds Forge, Sheffield. The challenge itself involved a relay team of 100 different swimmers each swimming 100m, so that's 4 lengths of your local pool if its 25m. The record stood at 1hour 37mins 53secs,an average of 58.7 seconds per swimmer.

The day was a huge success, with the Swim4Leukaemia team breaking the Guinness World Record by over 8 minutes and finishing in a new record time of 1 hour, 29 minutes, 3.78 seconds and in the process raising £25,000 for Leukaemia & Lymphoma Research.

The record attempting team was made up of past and present GB international swimmers, past and present GB Olympians along with National standard club swimmers, swimmers from the City of Sheffield Swim Squad and other clubs around the country, along with people who are close to me in my life. I especially wanted the event to have a community feel to it and of people coming together for a great cause.

After this great day my mum was enjoying life in remission from leukaemia, building herself back up to strength and making plans for the future, the main one being to renovate and extend our family home.. exciting times ahead!

Unfortunately another bombshell was only around the corner. After a dip in health in December 2014 my mum undertook some tests at the brilliant Christies Hospital in Manchester only to be told 2 days before Christmas that the cancer had returned and this time in the Spinal Fluid. It was devastating. Just as things were on the up for my mum and family she had been dealt another cruel blow, but none the less - and a true test of my mums character and resilience - she vowed to beat it again!

The doctors weren't optimistic about my mum’s future since her relapse and prepared us all for the potential that my mum may not make it through the coming months if chemotherapy was unsuccessful. After some intense treatment we received the great news that mum was responding to the chemotherapy. The cancer cells were reducing over the weeks much to everyone’s relief, right down to the point where the cell count reached the big 0!!! My mum had done it again, she had beaten the odds, what a woman!

In April 2015 we were dealt the cruelest of blows ever, the leukaemia had returned again and this time back into the blood. The doctors gave my mum the devastating news that she could not be cured from the Leukaemia as the disease was too aggressive. Still with this news mum remained positive that she would enjoy the remaining time she had left with her loving husband, close family and friends, and her two boys.

The doctors have managed to stabilise her and the leukaemia, and after some intense chemotherapy the doctors have made the decision, in consultation with my mum, to reduce treatment to allow her to maintain a better quality of life for what time she may have remaining. Unfortunately the doctors expect the leukaemia to appear again, if and when it does they have said that we need to prepare ourselves as a family for the worst.

So, with your support for this campaign and donations, you will be helping to save the lives of patients with blood cancer and give them access to life saving Clinical Trials and new drugs, along with putting money into the research projects which help find and develop new drugs such as Blinatumomab. Without the clinical trial there is a possibility that my mum wouldn't be with us today. I would like us to increase the amount of people who get access to clinical trials, thus given them another chance. Let’s help get that 6% higher in the hope that we can help save people's lives. TOGETHER we can make a difference!!!



Your family have been so courageous.I have got Mgus which can if not already turned to luekaemia.I am never without bone pain,after 8hrs sleep I am so tired.My daughter has offered her bone marrow if it came to it but though I have looked after myself and am fit I am also 80 and wonder if I can fight and recover from the chemo etc.I am at the hospital on 25 may,nxt week and am dreading it.