Save Alviar!
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Hi. I’m Alviar. #savealviar on social media 日本語はこちら: ストーリー ● 募金の仕方
An ordinary teenager living near St Albans in the UK. Except I have Leukaemia. Unfortunately the bad kind. These days 90% of Leukaemia patients are cured. I’m in the 10%. Intense chemotherapy, a bone marrow transplant (from my twin brother Justin) and other treatments have all failed to kill the cancer. I’ve been told I’ve just a few months to live. I was also told a year ago my Leukaemia was “incurable”. That was until a few weeks ago. A specialist team in Singapore have a brand new treatment. It cured Oscar, a 5 year old boy in the UK (you can read about Oscar here ). And I’ve just been told I’m eligible for the same treatment. But the treatment is in Singapore. And it costs £500,000. It sounds huge. How are we going to raise that? But as my mum and dad say, “we just need 50,000 people to give £10 and we’re there…or just 5,000 to give £100!” That’s it. Please give me my chance. To beat this cancer and live.
That’s my plea. But it’s not my story. My story is below. Please read it. So you get to know me. And thank you for reading this. I can’t tell you how amazing it is that ordinary people want to reach out and help someone in need.
Thank You.
Alviar
My Story
When I was diagnosed with leukaemia in 2017 at 15, I was sure I would be part of the 90% of patients that stay in remission after treatment. Unfortunately, that hasn’t been the case. I'm in the 10% and I have been fighting this cancer tirelessly. Over the last 3 years, I’ve been through several rounds of intense chemotherapy, 2 courses of radiotherapy, and a bone marrow transplant (from my twin brother Justin). All with the amazing support of the NHS world-renowned cancer team at UCLH in London. However, this summer I received the horrible news that the disease is once again progressing.
In January my doctors told me we had run out of options and that I had limited time left. We reached out to specialists from all over the world. The brightest leukemia experts came back with one response. My time was very limited. Just a few months. I don’t want to go into the feelings my brain went through when I heard this. And when I saw my mum’s and dad’s faces. And my brothers. We were all terrified.
Now, 8 months later I’m still here. But my doctors remain blunt. When the cancer starts to break through again and the chemo stops working I may have only a few weeks to live. We don’t know when this will be, but I am running out of time.
One of the great new breakthroughs in cancer care in recent years has been CAR-T treatment where they modify the T-cells (one type of defence cell) to attack the disease. But I have T-cell leukaemia and they’ve not been able to safely get T cells to attack diseased T-cells. Until now.
One team in Singapore has managed to do it and has already cured a 5 year old boy from the UK(you can read about Oscar here ). I now have a chance to go and get the same treatment. A chance to have a normal life as a teenager, cancer-free: a chance to really start my journey. I feel like cancer has robbed me of the last 3 years. I won’t let it take any more.
But the treatment alone costs £500,000 and it has to be paid up front. We need to raise this urgently. If we don’t raise it in a matter of weeks, the bad Leukaemia cells could break through again and my chance would be gone. It’s hard for me to write this, but without this treatment I’ve been told I won’t make it. The hospital require the £500K to be transferred to them before the treatment can start. So all the 500K raised will be transferred to the Singapore hospital. We’ve set out at the end of the page what the hospital will use the money for and what will happen to any unused (or any extra) raised. We hope to use them for any other treatment or expenses during treatment, and if any is left over I want to donate to another person needing the same treatment. I’d love to be able to help someone else in the way I’ve been helped.
Like an ordinary teenager, I like meeting my friends. Like playing video games and going out. I love to read fantasy novels by Terry Pratchett. At home I enjoy spending time with my mum, dad, two brothers, and cat. This year I turned 18 and was accepted into my dream course to study biomedical sciences at Oxford. I’ll be studying to help fight diseases. Perhaps to help give others a chance for a miracle cure. I never thought I’d achieve this dream. Just an ordinary kid from a state school. But studying is one of the things which kept me going through all the horrible treatment. These past few years I have worked so hard (even studying from hospital!) to make it this far. I don’t want all the effort to have been for nothing.
Throughout my treatment I have been adamant that I will not give up: not on my treatment, not on my studies. This is still my mindset: this will not be the end of me, and this is just the beginning of my journey!
Me and my twin brother Justin, who gave me my bone marrow transplant
... when we were still cute!
My Mum and Dad have written their stories below. Please read them as it means a lot to me!
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Mum's Story
Hello everybody, I’m Alviar’s mum, Chiharu. Thank you so much for reading Alviar’s story and thinking about a donation towards helping us to go to Singapore to receive treatment.
3 years. Young people like Alviar feel this much longer than people my age. 15 to 18 years old should be the most wonderful years in life. You would think Alviar must have had a very hard and sad 3 years and the same for us as a family. Of course that’s true, it’s been really hard on all of us. But actually we have a lot of happy memories looking back these 3 years. Alviar is surrounded by very supportive friends who don’t mention his illness so he can just be a normal teenager like everybody else.
I want to tell an episode that so impressed me. When Alviar had his first relapse, he started to lose sight in his left eye and then his right eye as well. It was a scary moment because his eyesight was getting worse every hour and finally he had to stop reading because he couldn’t see the words. We were admitted to the ward in UCLH and that night Alviar got a message from one of his friends using some new social media voice messaging technology. Young people are amazing, finding new ways to communicate to Alviar and send him messages to tell him he’s not alone. He was so happy. That was so special.
Alviar’s teachers at the local comprehensive, Roundwood Park School, were wonderful, always offering a lot of ideas,not just to keep Alviar studying, but for his mental support and for that of his twin brother Justin and older brother, Bryan.
I want to say some thank yous.
We have so many wonderful people in the NHS supporting us. The doctors and nurses at UCLH are always welcoming us with big smiles on our day care visits and when staying in the ward at the hospital: always cheerful and making sure that Alviar can have his treatment comfortably. The doctors are always ready to show us the next possible treatment every time he relapses. Watford community nurses are a great team: they always think of what’s best for Alviar. He didn’t want to miss school so they always put his visit in the early morning for blood check ups and treatments and they always care about not just Alviar’s body condition but his happiness as well.
I also want to mention some charities that have been there for us. The ladies from CLIC Sargent, Rennie Grove and Keech always make me feel happy after I talk with them, I feel secure because they know what’s happened and what is going to come next and they're much more than supporters, they're my friends.
Our family! In the UK, Switzerland, Japan, the US and Australia are always asking us how we are doing. My husband’s aunt and uncle have been always thinking about us, their minds are strong and they raise my spirits every time when we have bad news. My sister and brother in law are amazing, always by our side with big strong positive minds.
Our Friends! It wouldn’t be enough even if I can say thank you so much 1000’s of times to my friends and family. If I wasn’t with them, I couldn’t cope these3 years. I want to be strong in front of my sons and my husband (even when I sometimes cry), but I don’t need to be a strong person with them. I can share all of the good news and bad news together. I always feel I’m not alone. I can’t tell all episodes because it’ll be too long. But one episode that made our treatment more cheerful was the dinner parcels. When Alviar had his second radiotherapy, it was 3 weeks of treatment for which we had to visit UCLH every day. Our village friends made a team to prepare the evening meals every single night during this difficult time. Every night when we got home, hot meals and desserts were waiting for us. It was such a happy time for us even during the tough treatment, Alviar and I always talked about what’s today’s dinner would be and we all put on weight!
Sometimes, I get emotional and I wish if I could pull all of my son’s leukemia cells into my body because I’ve lived enough and everybody can just forget me. Even if I didn’t exist anymore nobody should be sad and he can just have a normal life. Also I forget what a normal life would be. But looking back these 3 years, my mind has been always happy surrounded by warm-mindedpeople and now our doctor has found this opportunity to cure Alviar! This journey will be the last one and Alviar will be cancer free!
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Dad's Story
August 2017, almost 3 years to the day that I’m writing this plea. We are packing our things to go on a holiday to Malta. We usually spend our holidays camping and hiking in the British countryside. We don’t do island beach holidays, but this year we’ve hired a cottage for a week and are planning on doing some of the things we’ve never done before. Like scuba diving in the beautiful blue seas we’ve seen on the tourist sites. Maybe we’ll even hire a sailing dinghy for a day and mess about in complete incompetence in the warm shallow waters. All 3 kids are full-blown teenagers now and they won’t want to be doing this sort of thing with their crabby parents for much longer. The day before we fly Alviar throws up his breakfast again. He got food poisoning at a dodgy restaurant he went to with friends to celebrate the end of school a good few weeks ago. It doesn’t seem to be going away. My wife Chiharu decides to take him to the doctors to get some medicine we can take away with us so that we don’t spoil the holiday. The doctor decides to send us to the local hospital for blood tests. The blood tests show that his kidney function is suffering, we should go to Great Ormond Street Hospital (GOSH) in London for more tests. They’ll arrange an ambulance. I ask if we should consider not flying tomorrow. “I would”, says the doctor. I begin to get very angry with the restaurant. I tell the doctor we could drive him to GOSH, it’s only 30 minutes up the motorway to London. “No, no, we’ll go under blue lights so it will be much quicker; better you go home and get him a few things and meet them there at the hospital.”
GOSH is amazing. How many people have written that sentence? I’m upstairs at the renal centre and it’s so beautiful. It seems to send out auras of competence and professionalism at the same time that it has a friendly ‘kiddiness’ to it. They’ve prepared a whole room for Alviar. It’s huge and it has a playstation and videos all wrapped in a cute bear cupboard. I browse through all of the games and videos in the hour and a half I have before they arrive under those super-quick blue lights. Intensive care is something else. The nurses flit constantly around the open-plan beds under the lights that never go off, while the dialysis machine whirs as it flicks Alviar’s blood around what looks like an enclosed pinball machine, ‘dirty’ blood out and ‘clean’ blood in. It’s our companion for the next 2 weeks, until Alviar’s finally given the all-clear and we, my wonderful family and friends and colleagues all breathe a massive sigh of relief. They’re still not sure what caused the problem, most likely the food poisoning, as we suspected. I consider writing an angry letter to the restaurant, or maybe I’ll write directly to the Food Standards Agency.
Three weeks later, we’re back with the cute teddy bear playstation and the pinball machine. I’m now commuting from the hospital: I work in Westminster and it’s rather a pleasant commute in the summer sunshine. The beer and pizza in the pub around the corner from Gosh are even more pleasant. My wife isn’t there to scold me and Alviar’s happy for me to slip off for an hour or so to get my dinner. He’s tucked up with his GCSE textbooks as usual anyway: the playstation has barely left its cupboard. Alviar calls. The doctor thinks I should come back to have a word. “What, now?” My pizza hasn’t arrived yet and I’ve only just started my second beer. “Now. And you’d better call Mum and ask her to come to the hospital too,” he says. Shit. I get my pizza rushed into a box and down my beer. The doctor can’t wait until my wife arrives. “It’s not food poisoning.” he says, “It’s Leukaemia.” All I can think of is that I’m really glad I didn’t send that letter to the restaurant.
And so it begins. We’re moved from GOSH to the Teenage Cancer ward at UCLH. The rooms are even bigger and they still have playstations. No cute teddy bear cupboards though. That and the MacMillan Cancer Centre round the corner are second homes to us now. We know everyone, everyone knows us. They know Alviar and his textbooks, always with his textbooks, through the intensive chemo and the radiotherapy and the lumber punctures and the transfusions. The textbooks are always on his lap, weighing down the blankets. They’re great at sending him home as much as possible, so he can go to school. When he can’t the school are great in letting him Skype into lessons, even though they’re not really sure it’s allowed. There’s a break in the treatment to allow him to take his GCSE exams. He gets the top grade in 9 out of 10 subjects and the 2nd top grade in the other. Of course he does. He’s a studying machine that seems to never stop pumping, just like the pinball machine at Gosh. My wife starts trying to match him in studying. She’s stuck to the computer every night past midnight reading academic papers on leukaemia research. Our consultant almost sighs at every meeting as another wad of research is thrust into her lap, but she doesn’t sigh: she’s far too professional and far too understanding for that.
It’s all going so well. He’s off the intensive treatment and onto the long-term maintenance. They can cure 90% of kids with leukaemia these days. Just 50-60 years ago all those kids would be dead. They’re still looking for and finding new ways to chip away at that last 10%. You don’t think about the last 10%. Even when the maintenance starts and a few weeks later Alviar starts to lose sight in his left eye, you don’t think about the last 10%. It’s his first relapse, it’s okay, they have a plan. Plan B swings into action like an army that’s been waiting to rush over the border. We have a whole new team to get us transplant-ready. Medical teams across the world are sent his blood profile. We need a bone-marrow match and they’re asking in Germany, America, Japan even though his brothers have a 25% chance of matching. His twin Justin is non-identical so he has the same 25%, but he’s a bull’s-eye. We’re back on the rails. Alviar’s bone marrow will become Justin’s bone marrow and Justin’s bone marrow doesn’t produce leukaemia. Simple! Only it isn’t of course. For Justin it’s a breeze, Alviar not so much. Through all of the intensive chemo, the steroids, whatever they’ve thrown at him over the last 18 months he’s barely broken a sweat: the textbooks have remained firmly propped up on blankets and the studying machine has rolled on, cramming more and more knowledge into that sponge. Now however for the first time I watch the textbooks slide off the blankets, unwanted and even unloved. Now I know he’s really ill and I’m scared.
But Justin’s cells graft. They start producing Justin blood in Alviar, and Alviar’s back home, back at school and powering his way to his A-level exams. He begins to think about Oxford. It’s a dream, but with the work he puts in, surely he has the right to that dream? We have another 10 months or so living the dream and then Alviar and I are in the local hospital again. His vision has started to deteriorate in his left eye. They do all sorts of eye tests as if something is wrong with his eye, but Alviar and I smile ruefully. We know there’s nothing wrong with his eye. It’s the leukaemia, and it’s back in his central nervous system. It’s back to UCLH and this time they’re blunt. This is your second relapse. We have no more armies waiting to rush over the hill. You’re in the 10% mate. Sorry.
That’s how blunt it felt, but they don’t give up. They put him on maintenance and keep the leukaemia at bay. They don’t know how long they can do it for, but it’s long enough to get him through his Oxford interview and his mock exams. You know how those went of course. The pinball machine is still pumping those balls with pinpoint accuracy. I start to hope for such little things. Let him get to his exams. Let him get to university and go to some wild parties. Let him get to the point where they find the next big breakthrough. Like I said they’re still looking for ways to chip away at that 10%. There’s CAR-T treatment where they modify the T cells that help fight disease so that they’re targeted at the leukaemia. Only Alviar has T-cell leukaemia and you can’t modify the bad cells to attack themselves. Until now. That’s why I’m writing this and why I’m so grateful to you for reading this far. There’s a team in Singapore who have done it. They’ve managed to get T cells to attack diseased T cells. It could be the breakthrough that brings us to 9%, 7%, 5%. We don’t know, but in 1962 they were curing about 3% of kids with leukaemia. 97% of the kids who got what Alviar has got died. In 2020, only 60 years later 90% of those kids are getting cured. How many kids are we talking about? It doesn’t sound much when you say that about 45 kids per million people get leukaemia. But there are now 7,800 million people on the planet (up from only 2,500 million in 1951, wow) and that means 350,000 kids every year are getting it. That means 700,000 parents like us are going through all of this. Every year. The unlucky 10% is 35,000 who don’t make it. Saving an extra 5% could mean saving an extra 17,500 children every year.
So if this new treatment can help bring down those numbers, it will not just allow Alviar to go to university (yep, he got the grades and his place is waiting for him), it will mean that in the next 50 years we have a chance to get closer and closer to that 5%. This treatment costs £500k. Half a million pounds. We have to pay that up-front before the treatment can begin.
So we’re here asking for help. Only it’s not a lot of people really, we need 50,000 people to give £10. There’s 7.8 billion on the planet and we don’t need £7.8 billion pounds! We just need 50,000 people to give £10. Or 5,000 generous people to give £100 With the world connected the way it is today we can do this. If you’re going to give us £10 and you ask all of your friends on Facebook and SnapChat and all of the other platforms to do the same and some of them do it, we’ll get there in no time. Alviar is my son. He’s a great kid. But any kid deserves this chance.
Thank you so much for caring and being here and reading this. Please share and let’s make this happen.
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What will the money raised be used for
The initial goal is GB£500K. That’s the money the Singapore hospital need us to transfer before they can accept me for the treatment. The hospital have said as follows:
“The costs quoted are estimated costs including most common complications expected. They will include:
- Initial chemotherapy to attempt another remission of disease
- Leucopheresis (harvesting) the T-cells from Alviar
- Chemotherapy if needed until the CAR-T cells are ready
- Admission for CAR-T conditioning and infusion
- Stay in Hospital until recovery and complications post CAR-T
- Bone marrow transplant from matched unrelated donor or family donor
Unused funds will be returned after completion of therapy. “
If we raise funds over the 500K or if for any reason the hospital returns any unused funds to us, then we will use these as follows:
1) Payment for any other treatment or care for me
2) Payment for travel to / from Singapore and other necessary expenses for me and my family in Singapore during my treatment there
3) Any excess we will gift to a family / person needing to fund similar treatment. We would love to have extra and be able to gift to help another child or person in the way we’ve been helped. We know the stress families go through when told of the costs and we hope we can give someone else a big boost.
4) If after a reasonable period of time we have not located what we feel is a suitable donor for any excess funds, (re point 3) above, then we would gift the money to a registered cancer charity.
Thank you again for your support. It means the world.
An ordinary teenager living near St Albans in the UK. Except I have Leukaemia. Unfortunately the bad kind. These days 90% of Leukaemia patients are cured. I’m in the 10%. Intense chemotherapy, a bone marrow transplant (from my twin brother Justin) and other treatments have all failed to kill the cancer. I’ve been told I’ve just a few months to live. I was also told a year ago my Leukaemia was “incurable”. That was until a few weeks ago. A specialist team in Singapore have a brand new treatment. It cured Oscar, a 5 year old boy in the UK (you can read about Oscar here ). And I’ve just been told I’m eligible for the same treatment. But the treatment is in Singapore. And it costs £500,000. It sounds huge. How are we going to raise that? But as my mum and dad say, “we just need 50,000 people to give £10 and we’re there…or just 5,000 to give £100!” That’s it. Please give me my chance. To beat this cancer and live.
That’s my plea. But it’s not my story. My story is below. Please read it. So you get to know me. And thank you for reading this. I can’t tell you how amazing it is that ordinary people want to reach out and help someone in need.
Thank You.
Alviar
My Story
When I was diagnosed with leukaemia in 2017 at 15, I was sure I would be part of the 90% of patients that stay in remission after treatment. Unfortunately, that hasn’t been the case. I'm in the 10% and I have been fighting this cancer tirelessly. Over the last 3 years, I’ve been through several rounds of intense chemotherapy, 2 courses of radiotherapy, and a bone marrow transplant (from my twin brother Justin). All with the amazing support of the NHS world-renowned cancer team at UCLH in London. However, this summer I received the horrible news that the disease is once again progressing.
In January my doctors told me we had run out of options and that I had limited time left. We reached out to specialists from all over the world. The brightest leukemia experts came back with one response. My time was very limited. Just a few months. I don’t want to go into the feelings my brain went through when I heard this. And when I saw my mum’s and dad’s faces. And my brothers. We were all terrified.
Now, 8 months later I’m still here. But my doctors remain blunt. When the cancer starts to break through again and the chemo stops working I may have only a few weeks to live. We don’t know when this will be, but I am running out of time.
One of the great new breakthroughs in cancer care in recent years has been CAR-T treatment where they modify the T-cells (one type of defence cell) to attack the disease. But I have T-cell leukaemia and they’ve not been able to safely get T cells to attack diseased T-cells. Until now.
One team in Singapore has managed to do it and has already cured a 5 year old boy from the UK(you can read about Oscar here ). I now have a chance to go and get the same treatment. A chance to have a normal life as a teenager, cancer-free: a chance to really start my journey. I feel like cancer has robbed me of the last 3 years. I won’t let it take any more.
But the treatment alone costs £500,000 and it has to be paid up front. We need to raise this urgently. If we don’t raise it in a matter of weeks, the bad Leukaemia cells could break through again and my chance would be gone. It’s hard for me to write this, but without this treatment I’ve been told I won’t make it. The hospital require the £500K to be transferred to them before the treatment can start. So all the 500K raised will be transferred to the Singapore hospital. We’ve set out at the end of the page what the hospital will use the money for and what will happen to any unused (or any extra) raised. We hope to use them for any other treatment or expenses during treatment, and if any is left over I want to donate to another person needing the same treatment. I’d love to be able to help someone else in the way I’ve been helped.
Like an ordinary teenager, I like meeting my friends. Like playing video games and going out. I love to read fantasy novels by Terry Pratchett. At home I enjoy spending time with my mum, dad, two brothers, and cat. This year I turned 18 and was accepted into my dream course to study biomedical sciences at Oxford. I’ll be studying to help fight diseases. Perhaps to help give others a chance for a miracle cure. I never thought I’d achieve this dream. Just an ordinary kid from a state school. But studying is one of the things which kept me going through all the horrible treatment. These past few years I have worked so hard (even studying from hospital!) to make it this far. I don’t want all the effort to have been for nothing.
Throughout my treatment I have been adamant that I will not give up: not on my treatment, not on my studies. This is still my mindset: this will not be the end of me, and this is just the beginning of my journey!
Me and my twin brother Justin, who gave me my bone marrow transplant... when we were still cute!
My Mum and Dad have written their stories below. Please read them as it means a lot to me!
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Mum's Story
Hello everybody, I’m Alviar’s mum, Chiharu. Thank you so much for reading Alviar’s story and thinking about a donation towards helping us to go to Singapore to receive treatment.
3 years. Young people like Alviar feel this much longer than people my age. 15 to 18 years old should be the most wonderful years in life. You would think Alviar must have had a very hard and sad 3 years and the same for us as a family. Of course that’s true, it’s been really hard on all of us. But actually we have a lot of happy memories looking back these 3 years. Alviar is surrounded by very supportive friends who don’t mention his illness so he can just be a normal teenager like everybody else.
I want to tell an episode that so impressed me. When Alviar had his first relapse, he started to lose sight in his left eye and then his right eye as well. It was a scary moment because his eyesight was getting worse every hour and finally he had to stop reading because he couldn’t see the words. We were admitted to the ward in UCLH and that night Alviar got a message from one of his friends using some new social media voice messaging technology. Young people are amazing, finding new ways to communicate to Alviar and send him messages to tell him he’s not alone. He was so happy. That was so special.
Alviar’s teachers at the local comprehensive, Roundwood Park School, were wonderful, always offering a lot of ideas,not just to keep Alviar studying, but for his mental support and for that of his twin brother Justin and older brother, Bryan.
I want to say some thank yous.
We have so many wonderful people in the NHS supporting us. The doctors and nurses at UCLH are always welcoming us with big smiles on our day care visits and when staying in the ward at the hospital: always cheerful and making sure that Alviar can have his treatment comfortably. The doctors are always ready to show us the next possible treatment every time he relapses. Watford community nurses are a great team: they always think of what’s best for Alviar. He didn’t want to miss school so they always put his visit in the early morning for blood check ups and treatments and they always care about not just Alviar’s body condition but his happiness as well.
I also want to mention some charities that have been there for us. The ladies from CLIC Sargent, Rennie Grove and Keech always make me feel happy after I talk with them, I feel secure because they know what’s happened and what is going to come next and they're much more than supporters, they're my friends.
Our family! In the UK, Switzerland, Japan, the US and Australia are always asking us how we are doing. My husband’s aunt and uncle have been always thinking about us, their minds are strong and they raise my spirits every time when we have bad news. My sister and brother in law are amazing, always by our side with big strong positive minds.
Our Friends! It wouldn’t be enough even if I can say thank you so much 1000’s of times to my friends and family. If I wasn’t with them, I couldn’t cope these3 years. I want to be strong in front of my sons and my husband (even when I sometimes cry), but I don’t need to be a strong person with them. I can share all of the good news and bad news together. I always feel I’m not alone. I can’t tell all episodes because it’ll be too long. But one episode that made our treatment more cheerful was the dinner parcels. When Alviar had his second radiotherapy, it was 3 weeks of treatment for which we had to visit UCLH every day. Our village friends made a team to prepare the evening meals every single night during this difficult time. Every night when we got home, hot meals and desserts were waiting for us. It was such a happy time for us even during the tough treatment, Alviar and I always talked about what’s today’s dinner would be and we all put on weight!
Sometimes, I get emotional and I wish if I could pull all of my son’s leukemia cells into my body because I’ve lived enough and everybody can just forget me. Even if I didn’t exist anymore nobody should be sad and he can just have a normal life. Also I forget what a normal life would be. But looking back these 3 years, my mind has been always happy surrounded by warm-mindedpeople and now our doctor has found this opportunity to cure Alviar! This journey will be the last one and Alviar will be cancer free!
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Dad's Story
August 2017, almost 3 years to the day that I’m writing this plea. We are packing our things to go on a holiday to Malta. We usually spend our holidays camping and hiking in the British countryside. We don’t do island beach holidays, but this year we’ve hired a cottage for a week and are planning on doing some of the things we’ve never done before. Like scuba diving in the beautiful blue seas we’ve seen on the tourist sites. Maybe we’ll even hire a sailing dinghy for a day and mess about in complete incompetence in the warm shallow waters. All 3 kids are full-blown teenagers now and they won’t want to be doing this sort of thing with their crabby parents for much longer. The day before we fly Alviar throws up his breakfast again. He got food poisoning at a dodgy restaurant he went to with friends to celebrate the end of school a good few weeks ago. It doesn’t seem to be going away. My wife Chiharu decides to take him to the doctors to get some medicine we can take away with us so that we don’t spoil the holiday. The doctor decides to send us to the local hospital for blood tests. The blood tests show that his kidney function is suffering, we should go to Great Ormond Street Hospital (GOSH) in London for more tests. They’ll arrange an ambulance. I ask if we should consider not flying tomorrow. “I would”, says the doctor. I begin to get very angry with the restaurant. I tell the doctor we could drive him to GOSH, it’s only 30 minutes up the motorway to London. “No, no, we’ll go under blue lights so it will be much quicker; better you go home and get him a few things and meet them there at the hospital.”
GOSH is amazing. How many people have written that sentence? I’m upstairs at the renal centre and it’s so beautiful. It seems to send out auras of competence and professionalism at the same time that it has a friendly ‘kiddiness’ to it. They’ve prepared a whole room for Alviar. It’s huge and it has a playstation and videos all wrapped in a cute bear cupboard. I browse through all of the games and videos in the hour and a half I have before they arrive under those super-quick blue lights. Intensive care is something else. The nurses flit constantly around the open-plan beds under the lights that never go off, while the dialysis machine whirs as it flicks Alviar’s blood around what looks like an enclosed pinball machine, ‘dirty’ blood out and ‘clean’ blood in. It’s our companion for the next 2 weeks, until Alviar’s finally given the all-clear and we, my wonderful family and friends and colleagues all breathe a massive sigh of relief. They’re still not sure what caused the problem, most likely the food poisoning, as we suspected. I consider writing an angry letter to the restaurant, or maybe I’ll write directly to the Food Standards Agency.
Three weeks later, we’re back with the cute teddy bear playstation and the pinball machine. I’m now commuting from the hospital: I work in Westminster and it’s rather a pleasant commute in the summer sunshine. The beer and pizza in the pub around the corner from Gosh are even more pleasant. My wife isn’t there to scold me and Alviar’s happy for me to slip off for an hour or so to get my dinner. He’s tucked up with his GCSE textbooks as usual anyway: the playstation has barely left its cupboard. Alviar calls. The doctor thinks I should come back to have a word. “What, now?” My pizza hasn’t arrived yet and I’ve only just started my second beer. “Now. And you’d better call Mum and ask her to come to the hospital too,” he says. Shit. I get my pizza rushed into a box and down my beer. The doctor can’t wait until my wife arrives. “It’s not food poisoning.” he says, “It’s Leukaemia.” All I can think of is that I’m really glad I didn’t send that letter to the restaurant.
And so it begins. We’re moved from GOSH to the Teenage Cancer ward at UCLH. The rooms are even bigger and they still have playstations. No cute teddy bear cupboards though. That and the MacMillan Cancer Centre round the corner are second homes to us now. We know everyone, everyone knows us. They know Alviar and his textbooks, always with his textbooks, through the intensive chemo and the radiotherapy and the lumber punctures and the transfusions. The textbooks are always on his lap, weighing down the blankets. They’re great at sending him home as much as possible, so he can go to school. When he can’t the school are great in letting him Skype into lessons, even though they’re not really sure it’s allowed. There’s a break in the treatment to allow him to take his GCSE exams. He gets the top grade in 9 out of 10 subjects and the 2nd top grade in the other. Of course he does. He’s a studying machine that seems to never stop pumping, just like the pinball machine at Gosh. My wife starts trying to match him in studying. She’s stuck to the computer every night past midnight reading academic papers on leukaemia research. Our consultant almost sighs at every meeting as another wad of research is thrust into her lap, but she doesn’t sigh: she’s far too professional and far too understanding for that.
It’s all going so well. He’s off the intensive treatment and onto the long-term maintenance. They can cure 90% of kids with leukaemia these days. Just 50-60 years ago all those kids would be dead. They’re still looking for and finding new ways to chip away at that last 10%. You don’t think about the last 10%. Even when the maintenance starts and a few weeks later Alviar starts to lose sight in his left eye, you don’t think about the last 10%. It’s his first relapse, it’s okay, they have a plan. Plan B swings into action like an army that’s been waiting to rush over the border. We have a whole new team to get us transplant-ready. Medical teams across the world are sent his blood profile. We need a bone-marrow match and they’re asking in Germany, America, Japan even though his brothers have a 25% chance of matching. His twin Justin is non-identical so he has the same 25%, but he’s a bull’s-eye. We’re back on the rails. Alviar’s bone marrow will become Justin’s bone marrow and Justin’s bone marrow doesn’t produce leukaemia. Simple! Only it isn’t of course. For Justin it’s a breeze, Alviar not so much. Through all of the intensive chemo, the steroids, whatever they’ve thrown at him over the last 18 months he’s barely broken a sweat: the textbooks have remained firmly propped up on blankets and the studying machine has rolled on, cramming more and more knowledge into that sponge. Now however for the first time I watch the textbooks slide off the blankets, unwanted and even unloved. Now I know he’s really ill and I’m scared.
But Justin’s cells graft. They start producing Justin blood in Alviar, and Alviar’s back home, back at school and powering his way to his A-level exams. He begins to think about Oxford. It’s a dream, but with the work he puts in, surely he has the right to that dream? We have another 10 months or so living the dream and then Alviar and I are in the local hospital again. His vision has started to deteriorate in his left eye. They do all sorts of eye tests as if something is wrong with his eye, but Alviar and I smile ruefully. We know there’s nothing wrong with his eye. It’s the leukaemia, and it’s back in his central nervous system. It’s back to UCLH and this time they’re blunt. This is your second relapse. We have no more armies waiting to rush over the hill. You’re in the 10% mate. Sorry.
That’s how blunt it felt, but they don’t give up. They put him on maintenance and keep the leukaemia at bay. They don’t know how long they can do it for, but it’s long enough to get him through his Oxford interview and his mock exams. You know how those went of course. The pinball machine is still pumping those balls with pinpoint accuracy. I start to hope for such little things. Let him get to his exams. Let him get to university and go to some wild parties. Let him get to the point where they find the next big breakthrough. Like I said they’re still looking for ways to chip away at that 10%. There’s CAR-T treatment where they modify the T cells that help fight disease so that they’re targeted at the leukaemia. Only Alviar has T-cell leukaemia and you can’t modify the bad cells to attack themselves. Until now. That’s why I’m writing this and why I’m so grateful to you for reading this far. There’s a team in Singapore who have done it. They’ve managed to get T cells to attack diseased T cells. It could be the breakthrough that brings us to 9%, 7%, 5%. We don’t know, but in 1962 they were curing about 3% of kids with leukaemia. 97% of the kids who got what Alviar has got died. In 2020, only 60 years later 90% of those kids are getting cured. How many kids are we talking about? It doesn’t sound much when you say that about 45 kids per million people get leukaemia. But there are now 7,800 million people on the planet (up from only 2,500 million in 1951, wow) and that means 350,000 kids every year are getting it. That means 700,000 parents like us are going through all of this. Every year. The unlucky 10% is 35,000 who don’t make it. Saving an extra 5% could mean saving an extra 17,500 children every year.
So if this new treatment can help bring down those numbers, it will not just allow Alviar to go to university (yep, he got the grades and his place is waiting for him), it will mean that in the next 50 years we have a chance to get closer and closer to that 5%. This treatment costs £500k. Half a million pounds. We have to pay that up-front before the treatment can begin.
So we’re here asking for help. Only it’s not a lot of people really, we need 50,000 people to give £10. There’s 7.8 billion on the planet and we don’t need £7.8 billion pounds! We just need 50,000 people to give £10. Or 5,000 generous people to give £100 With the world connected the way it is today we can do this. If you’re going to give us £10 and you ask all of your friends on Facebook and SnapChat and all of the other platforms to do the same and some of them do it, we’ll get there in no time. Alviar is my son. He’s a great kid. But any kid deserves this chance.
Thank you so much for caring and being here and reading this. Please share and let’s make this happen.
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What will the money raised be used for
The initial goal is GB£500K. That’s the money the Singapore hospital need us to transfer before they can accept me for the treatment. The hospital have said as follows:
“The costs quoted are estimated costs including most common complications expected. They will include:
- Initial chemotherapy to attempt another remission of disease
- Leucopheresis (harvesting) the T-cells from Alviar
- Chemotherapy if needed until the CAR-T cells are ready
- Admission for CAR-T conditioning and infusion
- Stay in Hospital until recovery and complications post CAR-T
- Bone marrow transplant from matched unrelated donor or family donor
Unused funds will be returned after completion of therapy. “
If we raise funds over the 500K or if for any reason the hospital returns any unused funds to us, then we will use these as follows:
1) Payment for any other treatment or care for me
2) Payment for travel to / from Singapore and other necessary expenses for me and my family in Singapore during my treatment there
3) Any excess we will gift to a family / person needing to fund similar treatment. We would love to have extra and be able to gift to help another child or person in the way we’ve been helped. We know the stress families go through when told of the costs and we hope we can give someone else a big boost.
4) If after a reasonable period of time we have not located what we feel is a suitable donor for any excess funds, (re point 3) above, then we would gift the money to a registered cancer charity.
Thank you again for your support. It means the world.
Fundraising team (5)
Alviar Cohen
Organizer
Adrian Cohen
Beneficiary
Bryan Cohen
Team member
Chiharu Cohen
Team member
Jackie Cohen
Team member
Takako Woods
Team member