Story


www.swim4leukaemia.com

 

 

My Story

 

In June last year 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.......

 

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 mums 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 and sometimes you may never find matching Bone Marrow for the patient, which could be fatal! So with all this in mind the race was on to find a Bone Marrow Donor for mum and with no more treatment available to Mum 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, however risks that my parents thought were worth taking,  mainly as the trial drug wasn't tried and tested however 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 GVHD Graft Versus Host disease this is where the new bone marrow from the donor wants to reject Mums Main Organs, fortunately there wasn'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, 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 ends to try and get rid of the refractory cells she will be given a fresh set of mature cells that hopefully will be strong enough and mature enough to attack any further cells and get rid of the Leukaemia once and for all!! Mum is still fighting 18 Months on from being diagnosed, this is a long time and in this time the amount of money spent on treatments and test 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 mums 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 thought and decided that I wanted to break a Guinness World Record (100 x 100 relay) in aid of charity in particular Leukaemia and Lymphoma research.

 

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

 

The record attempting team will be 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 as I especially wanted the record to have a community feel to it and that of people coming together for a great cause. Within the team will be Olympic, World, European and Commonwealth Medalists.

 

Along with the World Record attempt the event will also have a few other aspects to it. To start off the day and the event I will be holding a series of swim clinics which will be led by Olympic & Paralympic Coach Russ Barber and supported by Olympic, Paralympic, World, European and Commonwealth Medalists & GB International swimmers. My hope is that I can also involve children or siblings of children who have suffered with Leukaemia or receiving ongoing treatment for Leukaemia in the swim clinics. After the swim clinics the World Record attempt will take place!

 

With your 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's 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. Lets help get that 6% higher in the hope that we can help save people's lives,TOGETHER we can make a difference!!!

 

 

 

 

Mums Story....

 

In June last year and just before the summer holidays I felt a little tired compared to what I would normally feel after doing my regular lunchtime circuits, so after some good advise form my husband, (well....... He calls it advice we women would call it Nagging,) I decided to book an appointment with the Doctor.

 

After a quick trip to the doctors the very next day my world was torn apart as the Doctor confirmed that I had blast cells in my blood system, blast cells are a sure sign of cancer, over the next couple of days and a whirlwind of appointments at the hospital in Mons (Belgium) it was confirmed that I had acute Lymphoblastic Leukaemia, I was gutted as I was about to depart in two days time to cycle from John O'Groats to Lands end. I hadn't really grasped the seriousness at this stage. 

 

When someone tells you that you have cancer it seems like you are in a dream, "no way, this can't be happening to me" I thought.  So after some research on the Internet it suddenly dawned on me over the next couple of days that I was in serous trouble as lots of people die from Leukaemia, It could happen to me and it scared the living daylights out of me.  I wasn't able to sleep properly for days, our initial thoughts were, what and how are we going to tell our two boys, especially our youngest Oliver who was only 8 at the time, he was so brave....... I was really proud of him trying to hold on to his tears as he tried to make since of what we was telling him, Lewis was a little older and realised the serious implications to this illness, only this time it was me and my husband who was fighting back the tears as we had to tell him over Face time, we had to put on a brave face and be positive, telling your family that you have cancer is not a pleasant experience.

 

So over the next six months I was subjected to all types of uncomfortable treatments ending with massive doses of chemotherapy, sadly..... at the end of it I was given more bad news, "Mrs Coleman" the doctor said the chemotherapy isn't fully effective, you have some Refractory cells (Cells that are not responding to treatment) he said, so your next and only option at the moment is I would have to undergo a bone marrow transplant, that's if of course if they could find me a donor in time, I was eventually let out of hospital at 4pm on Xmas eve, although we as a family opened our presents as usual on Xmas morning it was fair to say it didn't really feel like Xmas, as I was so ill from the chemotherapy we decided to delay our Xmas dinner for a few days giving me a little time to recover, we tried our best again a few days later and as a family we had a few laughs, unfortunately that Xmas we will remember for all the wrong reasons. 

 

Thankfully in the new year came some good news, I was offered by the doctor the opportunity to take part in a brand new trial drug called Blinatumomab, there was no no guarantees and some additional risks, but we thought what the heck, what have we got to loose, the gamble was taken.

 

Blinatumomab is a form of chemotherapy delivered by a drip 24 hours a day for six weeks at a time, the good thing about the trial drug is it gave me another outside chance, if it worked it would buy me more time to hopefully find a bone marrow donor, without the trial it is more than likely that I wouldn't be here today, needles to say I am still here, it had worked.....

 

Some more good news "Mrs Coleman" the doctor said, "we have found you a donor" what a relief for all of my family, that bit of good news although it frightened initially (after the doctor explained the process) it allowed me to sleep a little better at night, I had been given a life line, many others before me hadn't. 

 

I spent six weeks in hospital in Brussels in isolation, with the doctors limited English and the nurses trying their very best to communicate, it was a horrible but necessary experience, after the bone marrow transplant process initially I showed some progress and was allowed home. Great, except whilst at home I continued to loose weight and was continually being sick and had zero energy, I couldn't even make myself a cup of tea and on occasion found it difficult to get to the toilet without help. Thankfully  my husband is in the Army, they have a great welfare system and was/are really supportive, he is now was my full time carer and we are thankful to them for allowing him the time. 

At the 100 day point after the bone marrow transplant I had a bone marrow test to see if my new bone marrow was doing what it was supposed to do, that is to attack the cancer cells. It hadn't worked the doctor informed us......I couldn't believe my ears....... I heard myself saying "no not again".....   My mind went into overdrive and could not take in any information from the doctor, once again I was faced with telling our two boys and immediate family that it hadn't worked, it was worse than on the first occasion many many more tears, even my husband Joe who is an absolute rock and incredibly positive found it hard to hide his emotions, we had been dealt such a cruel hand, we was in turmoil.  

 

"What next" my husband asked the doctor, he explained that it is unusual for a patient to relapse so soon after a transplant therefore he will refer me back to the hospital in Mons to undergo yet more chemotherapy, this was to prepare me for the next step, Donor Lymphocyte Infusion(DLI) essentially the young bone was swamped by the more aggressive cancer cells so he needed to give me a booster of mature cells from the donor, so I was of for the third time for chemotherapy and the third time of loosing my hair.

 

Being in hospital so often and at home has given me plenty of time to reflect, I consider myself as being lucky as I'm still here, still fighting, I realised that if it wasn't for the trial Blinatumomab I may not get another Xmas with my boys. 

 

So that is where all you the general public and dear friends can help, the help and support and donations that you give will be going directly to the very people who funded my trial, the charity Leukaemia & Lymphoma Research, they gave me a second chance, without donations from the public and people like you, trials like Blinatumomab would not be funded and people like me would not be given a second chance.

 

lewis has set up this just giving site as he also wanted to say thank you to The charity Leukaemia & Lymphoma Research, he is attempting to break a world record with current and past Olympic swimmers, he like you wanted to raise awareness and support for  Leukaemia & Lymphoma Research, did you know that only six percent of cancer suffers are given the opportunity to take part in trials with new drugs, me being one of them, like I said earlier if it wasn't for the charity it is likely that I wouldn't have made the bone marrow transplant stage, you don't know how much that means to me and my family, somebody you don't know who has given you a second chance at life,

 

by supporting the charity you will be making a real difference to real lives, with all your support and donations your will be giving many people from all walks of life, people like me another opportunity to live life to its fullest, I think that is the biggest gift that anyone can give,

 

So from me, my two boys and husband could I please say a massive thank you for taking the time to read my story so far, I hope to see you at the event in February all being well.

 

 

Your donation could help a blood cancer patient in one of many ways

 

£5 allows a newly diagnosed patient to receive a supply of our blood cancer information books

£25 pays for one sample of DNA to be analysed using a micro array test, helping to identify genes linked to blood cancer

£50 funds a PhD student for one day on one of our vital research projects building on a network of expert blood cancer scientists for the future

£100 supports a research nurse for one day to help provide new treatments to blood cancer patients on one of our life-saving clinical trials

£250 is a weeks worth of essential laboratory supplies used to conduct vital research to improve treatments

£300 pays for a blood cancer patient’s DNA to be screened providing a more accurate diagnosis and helping to guide treatments

£1,000 helps to buy sophisticated equipment needed to understand blood cancers

 

 

 

 

Thanks for taking the time to visit my JustGiving page.

 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

 

So please dig deep and donate now.

Updates 8

Thank you so much to everyone for your very kind donations so far!! It's amazing the support your all giving myself and my family along this journey, but by doing so helping others get a second chance a life like my mum got! :)

31/01/14 00:20

Had a great time last weekend at the Swim Clinic for Rotherham Metro Swimmers with James Kirton and Braxston Timm! Thank you to everyone who came we raised a great amount of money for the chairty!

11/07/13 11:30

Really happy to have raised over £2000, each and every donation will help make a difference so please keep donating and let's get and £1000!

04/07/13 11:04

Thanks to everyone so far who has donated!! I tell my mum everyday who's donated and without fail it always puts a smile on her face :)

23/06/13 21:33

Looking forward to doing a Swim Clinic with Braxston Timm and James Kirton on July the 6th!

23/06/13 21:31

Raising money for

Leukaemia & Lymphoma Research

Leukaemia & Lymphoma Research

Charity Registration No. 216032

Leukaemia & Lymphoma Research is the only UK charity solely dedicated to research into blood cancers, including leukaemia, lymphoma and myeloma. Your contribution really will make a difference to the lives of the 30,000 people diagnosed every year with a blood cancer. beatingbloodcancers.org.uk

Donations 649

Best wishes to you & especially your mum. We've been there with our son (rare lymphoma at 10 yrs) now back competing in the pool. When I see him swim I think how lucky we are and how great doctors are

Donation by Caroline Harrison on 14/04/14

£20.00

+ £5.00 Gift Aid

Great achievement. Very well done.

Donation by Anonymous on 29/03/14

£10.00

+ £2.50 Gift Aid

It's incredible what you've done and are still doing :-) keep it going!

Donation by Kirsty on 26/03/14

£10.00

Donation by Ed H on 22/03/14

£10.00

mobile-phone.png

Donation by Peter Gunning on 22/03/14

£10.00

+ £2.50 Gift Aid

Donation by Sebastian Fischhaber on 18/03/14

20,00 €

text donation

Donation by Anonymous on 02/03/14

£2.00

text donation

Donation by Anonymous on 01/03/14

£10.00

text donation

Donation by Anonymous on 01/03/14

£10.00

Inspirational. Congratulations on your world record. Very much deserved.x

Donation by CJ Ellis on 01/03/14

£10.00

+ £2.50 Gift Aid

Donation by Paul Roglic on 28/02/14

£10.00

+ £2.50 Gift Aid

Donations from Friends and Family.

Donation by Reg Lloyd on 24/02/14

£200.00

+ £50.00 Gift Aid

Donation by Neville & Nancy on 24/02/14

£25.00

+ £6.25 Gift Aid

Amazing achievement and an amazing family

Donation by Becki's supporters on 20/02/14

£50.00

+ £12.50 Gift Aid

Great job Lewis! Truly inspiring! See you in April :) xx

Donation by Jodie Le Resche on 20/02/14

£20.00

+ £5.00 Gift Aid

Good luck

Donation by Janice (in response ro Claire Hague) on 20/02/14

£5.00

+ £1.25 Gift Aid

Donation by Anonymous on 20/02/14

£10.00

+ £2.50 Gift Aid

Inspirational stuff - well done.

Donation by Ongs on 19/02/14

£20.00

+ £5.00 Gift Aid

Congratulations all - well done for your part Mike Pugh, there is life in the old dog yet.

Donation by Gus on 18/02/14

£20.00

+ £5.00 Gift Aid

Donation by Sue Morris on 18/02/14

£50.00

+ £12.50 Gift Aid

mobile-phone.png

Donation by Anonymous on 17/02/14

£5.00

+ £1.25 Gift Aid

Donation by Ann Crawford (Stand Church) on 16/02/14

£10.00

+ £2.50 Gift Aid

Well Done! Genuinely Inspiring! X

Donation by Sara Woodhouse Davie on 16/02/14

£10.00

+ £2.50 Gift Aid

Donation by Abigail Parsons on 16/02/14

£5.00

+ £1.25 Gift Aid

Donation by Diana Wynn on 15/02/14

£10.00

Donation summary

  • * Online donations£12,674.71
  • Offline donations£8,130.00
  • Text donations£544.00
  • Total raised£21,348.71
  • Gift Aid£2,583.63

* Charities pay a small fee for our service. Find out how much it is and what we do for it.