Normal chaotic week at Remission Possible HQ.
One emergency trip to hospital and 3 medical appointments. So Drs and hospitals visits are still very much part of our daily routine. I am always grateful to the NHS.
Remember Emily’s post.
I have always classed myself as a NHS Millionaire. If we did have to pay for medical treatment I certainly wouldn’t still have our family home or have three cars parked outside. Not that buying another car had been on my agenda, but Holly conned me into getting her one. Full puppy dog eyes, hugs and kisses, screaming tantrums and full teenage strops finally wore we down. Anyone who has been within a mile of us in the past 6 months have watched this story line unfold like a plot from a soap. Like a tennis match its been back and forth. Will she/wont she. So instead of completing a charity walk ‘Pauls Walk’ or taking part in Snowden rocks as originally planned this weekend we took some much needed and appreciated ‘mother & daughter’ time and picked it up. So if parking wasn’t difficult enough with our road currently closed we now are a family of 3 cars and 2 parking spaces . So the latest ongoing saga will now be who gets to park on the drive. Think Hol might win as she doesn’t have a license to drive anywhere. But at least I will know where she is.
We had news this week of another potential donor. They hadn’t been selected to donate and had felt a bit deflated. So I just want to share that this.
We always knew Emily didn’t have a perfect match and there were other complications with her donor cells. But mystery spanish man was the only potential match world wide. So we went for broke. Only hope. No time to wait. We were talking weeks without transplant.
Emily wanted everyone to find their bone marrow match she had thrown her weight and passion at supporting others campaign long before she knew she would need to find a donor. As a result some people have found themselves in situation were doctors are having a choice about which donor to go with. That really is an ultimate dream. So if you have signed up thankyou. If you have donated or in process of donating big thankyou. If you were a match but not chosen huge thankyou. This is the situation of dreams where people dont just find a match but drs have a choice between donors. There is still along way to go. Especially with mix ethnicity but thanks to campaigns like ‘help hollie’, ‘swab for margo’ and ‘shake for mike’ progress is being made. But remember we cant get complacent. There is always more work to do. So I intend to meet with my local MP this week to discuss what the Welsh Assembly can do.
Our Ball planning is now in full swing. We are very pleased and honored to welcome Chris Wells-West onto our planning team. I wish to take this opportunity to thank her for her support and congratulate her on her recent MBE.
Your mission this week:
Return your ball booking form. You need to be ticked off our spreadsheets.
Please get someone to signup to Cardiff Half and join our bigmoose crew running for Emily. Email email@example.com if you need convincing or a motivational chat or to simply add your name to the list. This is one opportunity to work with some amazing runners and coaches.
Just Google Rory Coleman and join in.
If I can do it. You can do it.
This weekend marks 2 months since Emily’s funeral. 3 months since she passed away and 19 years since my waters broke to have her. 13 weeks early. I went into hospital on Friday 13th June 1997 and I was told she would arrive in a few hours. On 22nd August she finally arrived. Yes I stayed in hospital all that time. She was trouble from the very beginning.
There has been tears everyday since we lost her. I have tried to stay focused on legacy building. We have sold 189 Ball Tickets. This week Sir Terry Matthews rang me at the same time he was trending on Twitter to discuss the support Celtic Manor have given us & continue to offer.
I visited BelleVue Nursery to look at the amazing activities they did to raise nearly £500. I started one to one counselling with Tenovus. She described us as a resilient family.
resilient (of a person or animal) able to withstand or recover quickly from difficult conditions.
synonyms:strong, tough, hardy; More
quick to recover, quick to bounce back, buoyant,difficult to keep down,irrepressible; adaptable, flexible
So keeping busy. Trying to move forward. But it isnt always easy.
The sympathy flowers have died. Cards stopped arriving, phone stopped ringing. The general senses is life has returned to some sort of normal.
School run, food shopping, ferrying kids to and from activities. But in reality life is far from normal. The youngest cant remember Emily with hair, she doesn’t recognise photos of her. There is an empty seat at the dinner table. My life pre-diagnosis doesn’t exist.
People cross the road to avoid me or point and whisper. I don’t want to be referred to as “the one who’s daughter died” I am still the same person just a bit sadder. We are still a family of six. I will always be a mum of four.
The children have asked questions like “What do I say if anyone asks how many siblings I have”.
Nobody wants to forget Emily. But sometimes it is too difficult to explain. We talk about her at home everyday. Things still belong to her. Its her bedroom. Her books. She is still here, alive and kicking in our hearts and memories.
Smiling through tears.
Laughing at memories.
I am going to attempt writing a bit more regularly. Initially I was concerned I wouldn’t have enough content. However things at Remission Possible HQ are a bit hectic. I don’t have Emily’s flare or ease of writing but feel its important to keep you lovely people with us on this ride.
I had been advised that after 12 weeks the ‘clouds would lift’ and I would feel better. well Saturday was 12 weeks and although our grief is causing all of us at home to cry at random things, several times a day, Saturday was definitely a remarkable day. We smashed through £4500 mark on just giving. Which for Evan ( age 12) was a really big thing. This is how. Hankies ready.
A little girl named Elsie turned 1. I don’t know her or her family. But like many of you who followed Emily. They have been inspired to do something. They very kindly donated her birthday money instead of buying her gifts to our just giving page. Please take a minute to have a look at all the lovely comments they posted.
At last count it was £230. WOW. How amazing. But a word of warning to her family& friends when she becomes a stroppy teen ( they all do eventually) and wants the must have latest thing, she may want the money back. Xx
Emily was such a foodie. So we went to Monmouth food festival. It was bitter sweet. A lot of tears before, during and after going but it was good to be out doing something we know she would have loved. Highly recommend peanut butter brownie with hot chocolate sauce & cream. Very indulgent.
Her food tech teacher was there and we chatted briefly about Emily’s love of food and the coursework that she still uses in school to help other. Coursework we were glad to see the back off. During trial session at home our poor chickens couldn’t keep up with demand when doing the egg topic. Although we still haven’t lost the weight from the 50 crème Brulee she practised one week.
Happy times and memories.
The past 12 weeks have seemed like an eternity.
We have been kept busy with contining to plan events that had started before Emily passed away. We kept our promise to volunteer for Bloodwise at the a world half marathon in Cardiff. We completed the Bloodwise charity canal walk.
We pledged our support to Paula appeal by going along to a recent swob and fundraising event. But mainly Ball planning.
On Wednesday 8th March at 6:30am I rang the hospital, like I did every morning to see if Emily had a settled night. I was greeted with’better bring a notebook, she’s planning again’. She was indeed planning. She wanted a Ball. A reason to get all dressed up. (There were always dresses hanging in her hospital room) Have amazing food. Have a fun night out with family and friends. To speak in public about the difference we could all make. To inspire others and raise more money.
So the Ball is booked at the Celtic Manor resort. The location she wowed the audience during the Mayor of Newport Pride of Newport Event.
Master Chef finalised Larkin Cen will be designing the menu. His takeaway Hokki was a firm favourite during her time post transplant as they kindly agreed to deliver to the ward. Chilli squid was ordered everytime.
We also have some entertainment that is being kept under wraps until nearer the time.
We have had meetings at The WesternMail who have kindly offered to be our media partners. We have continued to develop our work with We Fight Any Claim, the first company that pledged their suport to find Emily a match and have suppored her fundraising work with Bloodwise.
We have met with Bigmoose who have put together a running team for Cardiff Half marathon. visit www.bigmoose.co for more information.
Thanks to Griffithstown Harriers we have set the date for SantaRun 10th December
We are redesigning the website to reflect the new team approach and direction we will be taking Remission Possible.
We dont believe we will ever know exactly what Emily was working on or who’s lives she had inspired or impacted but would like to share somethings we have discovered since she died.
A young lady who Emily had been working with on encouraging the Italian government to look at the support charities can offer cancer patients has started making and delivering boxes to young cancer patients in Italy.
Emily had written lessons plans that Mrs Kent her french teacher has been delivering to her year group about fundraising. These will now be used to help us design a schools program. The main aim is to educate others in how they can be more body aware as early diagnosis saves lives. Campaign to encourage more to give blood, register as a bone marrow donor and simply give someone a little time.
We have also received news that a Croesceiliog pupil is a potential match. I will update you more in the next blog.
Very proud mum.
It has been the week of every parents night mare. Yet its not a time we had dreaded because it had never been on our horizon.
Emily didn’t fight cancer. She had cancer twice, reached remission twice. It wasn’t a battle just simply a challenge that she had taken on and won.
Transplant however was a different story.
We believed Transplant was the only option. We still very much believe it was the correct decision. We will be eternally grateful to the mystery Spanish gent that gave her a chance of life. The opportunity to have 14 more months with her. His donation gave us an amazing family Christmas all together without a hospital in sight. Her 18th birthday. Her sixthform leavers ball. A 1 year post transplant tapas night. A family & friends wedding. Starting university. Planning a future.
Transplant was tough. The first 100 days quickly passed with an equal mix of time home & in hospital. But as time went on less and less time was spent at home. 309 days in hospital during 2015 was a strain on everyone but there were very much victories. The medical team would visit early so she could have a few hours to attend lectures to keep up to date on studies. They very much adopted her wish to get to Reading University and study microbiology. A dream that occupied her last discussion with her consultant.
The last few days were very sad but we still had no idea what laid ahead.
We remain shocked and confused about why she is no longer here. But we are accepting that the difficulties were simply too great. If there had been more options/ drugs/ treatment then her incredible medical team would have found them. In the end she took control and did it her way. With dignity and respect for herself and those around her she passed away on March 12th. Our hearts are bursting with pride and grief.
The future is filled with her ambitions. She left plans many plans for us to keep busy. We intended to continue her legacy.
Her legacy will be to support the building of a Bone Marrow Transport Ward. One in which she had hoped to work one day. One where patients can have dignity and access to toilets while in isolation.
As a family of five with an amazing community behind us we will strive to keep her ambitions alive.
We have booked Ball at Celtic Manor on 22nd October. A Santa Run on 10th December plus many more events are being planned. All support welcome. Every £1 in the pot will make a difference.
But simply the most important thing to remember is she was in remission. She did not have cancer. Remission was Possible.
“I don’t want you leaving this saying how inspirational I am unless you are inspired and motivated to do something”. Emily Remission Possible.
So please get in touch. Join in. Lets get building a legacy.
Donna, Andrew very proud parents xx
On the eve of the New Year, the final day before we venture into 2016, I am happy to announce I am officially one year cancer free.
I have been in remission a whole year!
365 days! (And more really)
What a year it’s been.
I always knew 2015 was going to be a hard year. I entered the with all the joy of knowing the chemo had worked, all the hope for the future and all the nervousness in the world for what was to come.
I had never thought the transplant would be easy, but I must admit when they told me to expect it to take a year to get better, I took that as a joke! I am the girl who went back to school two weeks after finishing chemo the first time after all…
There has been a lot more time spent in hospital this year, so much so that I have spent far more time as a resident of the Heath Hospital than my own house. I may go on about moving out a lot, but generally that’s been a wish to relocate to university halls… not the clinical dullness of inpatient life. We think I have spent around 300 days in hospital. Which is a bit bonkers when you think about it.
A year cancer free is a long time in the world of Burkitts lymphoma and I am so so happy to be at this point.
And really, I have achieved a lot this year. Growing a new immune system (however pants it may be at times)., starting my foundation course, being named one of Wales’ coolest women and Newport’ local hero. I’ve organised a Santa Run and an afternoon tea, persuaded my mum and friends to do the Cardiff Half and between the three raised well over £5000 for various charities. I’ve expanded my horizons beyond measure, met some fabulous people and lost some wonderful people as well. I’ve been to the weddings of some of my closest friends and family and celebrated leaving Sixth Form(ish) in the most amazing dress. I’ve gotten an offer for uni, and we finally had a proper family Christmas. (Which was at Bluestone, thanks to Dreams & Wishes and was THE BEST THING EVER)
I am overjoyed to be leaving this year behind and moving on, but this year has been in no way wasted. I know I’ll look back on it as being a rather dark time, yet I’m happy and always have been.
It may have been a bit of a hike, a struggle and the journey is far from over. In spite of all I can’t complain-
I am still here! (Which of course is a pretty good thing from where I’m standing!)
I’m typing this about to go into a pantomime, then I’m off to a New Years Party so this is all I have time for. That in itself is almost something to talk about, me having a social life! Funny.
Keep Smiling and HAPPY NEW YEAR!
Is it possible to be busy to the point of mania, yet chronically bored at the same time? That’s how the past few weeks have felt to me at least.
Yes, I’ve been back in hospital again… but was discharged on Wednesday and am ready to get into the Christmas spirit!
There’s been nothing different to what we’re usually dealing with, more CMV issues and a line infection, but in true RemissionPossible style I’ve cleared the infection, saved the apheresis line and my suggestion for continuing CMV treatment appears (so far) to actually have been the best decision we could have made… Go me!
Most of the manic stress has come my need to micromanage my care and make sure all the different people who need to communicate with each other and do things actually communicate and do them. Assumptions have caused me a lot of issues… If you want something done, do it yourself is the case sometimes I feel, and have felt quite a lot recently
Adding uni deadlines and Christmas to all this certainly hasn’t helped!
Somehow, but predictably there’s been such boredom….. The longing to be out of hospital walls has been overwhelming at times. No lie, there is a new F1 doctor who didn’t want to have to see me yesterday….not for there having been issues in care but because I had literally cried on frustration, anger or sadness every time he had ever seen me! Bless him, he was terrified of having to deal with that again. That’s how it’s been though, me twiddling my thumbs, wondering when on earth my body is going to sort itself out!
But I’m out now, and ready to get all festive so I’ll tell you about the few genuinely interesting things I’ve been up to recently. The two things that I’ve been most excited to tell you about are both Bloodwise related!
The first was a bit of a while ago now….
Back in November I attended Bloodwise’s research open morning, where they showcased he current research going on in Cardiff (and gave all the ‘regulars’ a chance to catch up!)
You all know I’m a total science geek so attending a morning where numerous scientists were talking about their work and at the complete mercy of my questions was fab. The work the researchers are doing is simply mind blowing, and seeing the innovative way they were working to solve problems was inspiring for a girl aspiring to be one of them. Most know my discomfort around the word inspire, so that’s a big thing for me to say.
The morning had a very informal format where the researchers were available in the labs for you to wander between and chat to, which allowed a very different experience to usual conference type events.
My favourite thing was seeing a model that had been built of blood vessels to do investigation into endothelial cells that would reflect how CLL cells actually act in the blood – petri dishes can’t show the impact pressures and other factors have on how leukaemia cells actually behave. The main reason for using it was to see what potential treatments would stop chronic leukaemia cells entering passing through the endothelial cells into lymphatic tissues, the thing that allows the condition to worsen. The cases that result in a build up of leukemic cells in the lymph glands are generally the hardest to treat and the most aggressive.
Hearing about targeted therapy was also incredibly exciting, because it will lead to less harsh treatment, better survival and ultimately the day when we don’t see people having to endure numerous regimes before finding one that works – lab work will soon be able to guide clinicians to choose a treatment that has already been proven to work on a sample of that patient’s cells. I’ve seen people go through the anguish of treatments failing, or having resistance, so the idea of ending that is very hopeful.
I am aware I’m not explaining this very well at all, and that it probably comes across as boring but I assure you that it was fascinating!
There was a lot of talk about targeted therapies across the different researchers, with some using flow cytometry to see the abnormalities in patient blood components at diagnosis, then monitoring as they normalise, to looking a how the telomeres on the cancer’s DNA can indicate the level of treatment needed.
I’ve also been invited to spend a bit more time watching the team do their work, which I’m looking forward to.
If all that above meant nothing to you (or if it should have and I recounted it terribly!) here’s something I heard that’s a little less PhD and more personal blog and an analogy very befitting to this time of year.- Cancer being that guy at the party, the one who shows up, parties hard, drinks hard, drinks everything, then when everyone else is exhausted by him, cancer carries on, stealing every last remnant of food and drink from everyone else, until he’s the only one left going and everyone else (the cells) are passed out, done….
Paints a picture, right?
So the other things that we’ve been up to with Bloodwise is running! We held our Santa Run last Saturday and I feel it was a huge success. Though I’m still not sure on fundraising totals, we had around 115 Santa’s and elves running, all of them looking absolutely fabulous.
All sorts got involved, with a few buggies getting in on the action, and a scooter thanks to my sister. Some ran it in a breeze, others struggled…all finished and got themselves on Santa’s Good List for this year!
Big thanks to Griffithstown Harriers for helping organise, Be the Best Military Fitness for the fab warm up and The Olive Tree for selling tea/ coffee and giving us use of the room.
Everyone who ran, or donated are helping to fund the work I witnessed in the labs and are helping to cure blood cancer. The money that was raised will make a huge difference in meaning those scientists are funded in doing their work so passionately.
That’s it from me for now. I hope everyone else is beginning to feel a lot like Christmas!
Keep Smiling (and scrolling for Santa pics….)
Fancy getting yourself on Santa’s good list?
Need an excuse for ‘just one more’ mince pie?
Fancy showing the kids you’re not that unfit?
Want to help us save the lives of people with blood cancer, now and in the future?
OUR FAMILY SANTA RUN COULD BE THE EVENT FOR YOU!
As a child, the local Santa run around Croesyceiliog and Cwmbran Boating Lake was a big part of the run up to Christmas. Though admittedly I never took part, as a family we would go along to cheer on the runners, pick out our favourite Santa costumes and put some money in the buckets for charity. It was always a great morning out, a real community event where with runners and spectators, hundreds of people would be together, getting into the Christmas spirit. I would be waving my letter hoping to spot the real one.It’s now been several years since the last run, and we have decided to do something about it!
We want to create a fun filled morning, where everyone can enjoy a bit of pre-christmas cheer in the fresh air, get the community together- just do something that doesn’t involve hospitals….somewhere my family has spent the last two Christmases centred around. All this and raise some well deserved dosh for Bloodwise!
So who are Bloodwise?
Formerly Leukaemia and Lymphoma Research, Bloodwise were set up in 1960 by the Eastwood family after their daughter, Susan passed away from Leukaemia. The charity helped set up the first ever research unit dedicated to blood cancers in Great Ormond Street, and have played a huge part in seeing that 2/3rds of people diagnosed with Leukaemia, lymphoma or other blood cancers survive 5 years. In 1960, almost everyone died of their disease.
Yet they still have so much to do.
November 11th 2014 was one of the best days of my life. November 13th 2014 was one of the worst.
It’s been a whole year now since I found the new lump, and today marks a year since I officially found out I’d relapsed. The days in-between that involved the most incredible day in London when I sang at Royal Albert Hall.
And I’m a little confused as to how I feel about the whole thing. I have felt rather down, but more related to the amazing day I had, more than the cancer. After all, if I hadn’t accepted that by now, I don’t think I never would! It’s more that I feel emotional that it’s been a whole year since that day, the last day I felt completely well and completely me. I’m not saying that was the last time I was happy by any means, just that things had always felt like they’ve had to compromise in some way since then.
The recent anniversary has made me think a lot about how the world looks at people with cancer.
There has been a video circulating the Internet of a teen in New Zealand , Jake Bailey, who gave an amazing head boy speech shortly after being diagnosed with cancer. The speech is a great one, full of wisdom and integrity- made remarkable by the fact he was told he wouldn’t be able to leave hospital to make the speech. He admits the seriousness of his diagnosis, and how his doctors had told him he would be dead within weeks without treatment. That resonated deeply with me, because I was told the same things, told I had to start treatment immediately and we had the same diagnosis. Except I wasn’t cool enough to be head boy, giving a big speech. My personal speech was actually wanting to eat Christmas dinner. I got a chest drain instead. Yay for me
The thing that I hate about his story is that a large number of news outlets that have decided to interpret this as a terminal diagnosis. It isn’t. At all. For one, being told of certain death without treatment could apply to many cases diseases and conditions…..like diabetes or measles, so to be told that for a cancer diagnosis makes sense to me, the time frame only showing the seriousness of the situation. His teacher even makes a point of saying that Jake has a good prognosis. It really angers me that he would then be reported as dying!
Imagine how it would make you feel, to battle hard to be able to make a speech, to have so many people be touched by the story and you achieve your goal of touching people ad impart an important message, only for the point of it to be ovr-ruled by silly and thoughtless journalism. Imagine having people talk about you as if you were on your deathbed when YOU ARE NOT.
There seems to be a love of tradgedy surrounding teenagers and cancer. For though I’m sure no one wants anyone to die, there is a certain feeling of love towards that martyrdom, ‘waste of life’ etc. And I am just so confused by it. Fed up of hearing about it. Because this journey shouldn’t be sensationalised.
Plenty of people have heard my views on what Hollywood does in stories about people with cancer. Well media, this week my message to you is that the same of m continually message to film directors and writers…. Not everyone with cancer dies. Or is going to die. Some of us do pretty well. Even the ones who can write and give awesome speeches. Even the ones who even I will say are pretty ‘inspirational’ despite my squeamishness around that word.
it makes me wonder how I could be perceived. I may be bald, and spend most of my time on a cancer ward, but I don’t have cancer. And I haven’t had cancer for the whole of this year (!) I reached remission on New Years Eve It really seems to go against the way we are sort of taught to perceive and stereotype this illness, to think that people are getting better, even if they aren’t looking ‘normal’. My mum has had several people assume that because I’m still coming back and forward hospital, I’m still seriously ill and have reacted in a negative way upon hearing I’m not on chemo…. assuming the worst and that chemo isn’t working , not the truth which is that I don’t need it!!
It’s what’s getting me through this week, just that thought that though it has been a year since everything came crashing down again, though it’s been a year since I had that wonderful fab day in Royal Albert Hall, being a year since relapse also means I am so so close to being a year in remission. Won’t it be the best way to start 2016 knowing I’ve been disease free for a year?
Hopefully I can enter 2016 well and truly clear of my pesky virus’ also!
if you want to watch the awesome speech I’ve talked about, you can below
It’s been a while again, but I want to thank everyone for their well wishes regarding the treatment in Bristol. The first one went well, and I’m due to go for the next on Thursday and Friday this week. The process of the treatment was simpler than I had thought it would be, and was very relaxed- each day I arrive, get hooked up to the machine, and just sit in the chair (a nice one like the dentist’s) and wait for the machine to do its thing.
All whilst looking incredibly chic in my sunglasses and bobble hat! We went for coffee after the treatment on one of the days, and the photo below was the result of my ‘cool’ outfit and a very large plant. Whoever knew Bristol Royal Infirmary was so exotic?
Another update: I’m no longer an inpatient!!!!! I am finally home, though having to return to TCT daily for my infusions, I still need treatment for the CMV. Thankfully my bloodwork is showing the drugs ae taking an effect, so it’s all good.
The final thing I touched upon during my last ‘update’ blog was my hair. It continued to fall out over the past few weeks, so I have now shaved it off. And I’m not too upset. The transition from patchy-fally-outy to skinheadish is definitely a positive one. I may still be devastated that it has fallen out, but I’m glad I won’t have hair all over the place any more. Please remember: my being bald doesn’t mean I am suddenly more ill, or have cancer again. It’s just become a part of my post-transplant journey, something all transplantees will agree is weird, unpredictable and just plain doesn’t make sense most of the time. I’m still ill, but not. It’s a bit of a confusing place to be, this recovery phase and even more confusing to try and explain. Also, being bald DOES NOT mean I look like Sinead O’Connor. Or any other bald woman. Because I really don’t, you know except for the fact we have no hair.
I’m glad this next week is going to be a busy one, with Bristol, TCT Cardiff every day, being in uni and assignment hand ins because it’s also the anniversary of the week I found out I’d relapsed. Which means a year has gone by already. Can you believe a whole year has gone by? I’m struggling to, because though I feel like forever has passed by since everything went up sh*t creek, a year seems like such a long portion of time to know I’ve been in this way for. I may talk more about it later in the week. I don’t know. Urgh. And that means 2 years since diagnosis is impending, but also the mark of me being a year in remission (YAY)
There will be a full-on post coming about it soon, but get your Santa costumes, tinsel and baubles and be ready to run to beat blood cancer!
It’s going to be on the Saturday 12th December at 10am from the Olive Tree near the Oasis in Croesyceiliog, in association with Griffithstown Harriers and in aid of Bloodwise. It’s going to be fun for all, and at only 2 miles the whole family will be able to get involved! It’s only £5 to register and I can’t think of an easier way to get on Santa’s good list…
Keep your eyes peeled for more information over the next few days, but if you’re already sold, you can sign up at https://bloodwise.org.uk/event-challenges/run/family-santa-runl
PS. A HUGE thank you to the Knitting Cwtch at Llantarnam Grange for their amazing donation of hand knitted hats. The skill and craftsmanship that has gone into them is beyond belief, as is the number! There are hats going to the Noah’s Ark Children’s Hospital, Teenage Cancer Trust Cardiff and the Oncology Centre in Bristol. I will post some pictures of them being modelled when I can!