What is a Bone Marrow transplant? | In loving memory of Jay.

A bone marrow or stem cell transplant replaces damaged blood cells with healthy ones. This transplant can be the last chance of survival for people suffering with Leukaemia and lymphoma, like my good friend Jay. Jay had lymphoblastic lymphoma, and had a bone marrow transplant in July after undergoing an unsuccessful course of chemotherapy. The transplant was a success, buy Jay's health took a turn for the worst after contracting Influenza and microangiopathy, which was a complication caused by his bone marrow transplant. Jay sadly passed away on January 9th. The reason I am doing this blogpost is because I was good friends with Jay, and he always said that he wanted to create a blog to promote awareness of bone marrow transplants. Since Jay never got to fulfil that wish, I am going to try my best to do it for him.

Why are bone marrow transplants carried out?
Bone marrow transplants are used to treat conditions in which the bone marrow is damaged and unable to produce healthy cells.
Conditions that transplants can be used to treat:

• Leukaemia and lymphoma - these are blood cancers.
• Myeloma - cancer affecting blood cells called plasma
• Severe aplastic anaemia (bone marrow failure)
• Certain blood and immune disorders.

What does a bone marrow transplant involve?

A bone marrow transplant can involve taking healthy stem cells or bone marrow from another person, ideally a family member, but only 30% of cases have a well-matched family member. The cells have to be closely matched to the person receiving them to increase the chances of a successful transplant. This is called an allogenic transplant.

It's also possible to remove your own stem cells and transplant them later. This is called an autologous transplant.

A bone marrow transplant has five main stages:

• Tests and examinations to assess your general health.
• Harvesting - the process of obtaining the stem cells to be used in the transplant.
• Conditioning - preparing your body for the transplant by using chemotherapy and sometimes radiotherapy, this is so the damaged stem cells are being killed off before the transplant.
• Transplanting the stem cells.
• Recovery.

Risks of a stem cell transplant

A bone marrow transplant is a very intensive procedure which requires one to two months in hospital, and the patient is open to many risks. These include:

• Graft versus host disease - this occurs in allogenic transplants when the transplanted cells start to attack other cells in your body.
• Reduced number of blood cells - this could lead to anaemia, excessive bleeding or bruising, and an increased risk of infection. 
• Chemotherapy side effects - sickness, tiredness and infertility.

BONE MARROW DONORS NEEDED!

As you can figure from this blog, a bone marrow transplant is an extremely hard procedure, which no one should have to go through. What makes a bone marrow transplant even harder is the wait for a well-matched donor, it's not as easy as it seems. More people need to join the stem cell donor list so more people have the chance of a successful transplant. Register today, and save someone's life. With only 30% of cases able to get stem cells donated from a relative, they need your help.

DON'T WAIT TO DONATE.

A PATIENT OUT THERE IS WAITING FOR THEIR PERFECT DONOR, THAT PERFECT DONOR COULD BE YOU!

REGISTER TODAY!

To find out more: https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells

Register at Anthony Nolan or British Bone Marrow Registry.

Goodbye 2016, hello 2017! | Collab with Evie

I am in disbelief that 2016 has come to an end; it only seems like yesterday that I was declared No Evidence of Disease at the start of the year. 2016 has been a fantastic year, despite still being in cancer treatment, I am able to do the most amazing things. Cancer is the worst thing that has happened to me, but I am glad that 2016 has reflected how I made my cancer a positive not a negative.

2016 had a tough beginning. Fighting both cancer and anxiety was the toughest part of my battle. I don't want to think of the panic attacks, and the fear, and the side effects from both chemotherapy & radiotherapy. I want to think of 2016 as a year of massive progress and accomplishment for me. Beating the anxiety was a massive step for me. Like cancer, I was determined to beat the anxiety, and that's exactly what I did. In March, I finished the gruelling 7 months of intensive chemotherapy and radiotherapy, it was the hardest thing I have ever had to endure. It was physically and mentally draining, but I stayed strong and I showed cancer who's boss.

2016 has made me realise the important things in life. I really feel like I have learnt a lot about myself. I have learnt to embrace my cancer and love me for me! I don't hide. I show off my imperfections caused by my cancer with pride and strength. I have been able to embrace my cancer by uploading my first ever youtube video, which has now received over 100,000 views! For me this video was to help spread awareness and show everyone that I don't have to hide my cancer, instead I will show it off. My youtube channel has helped me receive a lot of publicity which is extremely important for me to spread childhood cancer awareness. I have worked with Sarcoma Uk, appeared on ITV news and on various news sites.

2016 has seen me progress as a person, because I am able to make my voice be heard. I have grown so much confidence and an attitude in which I don't take "No" for an answer. I have grown an extreme passion to help other children with cancer like me. 2016 has really shown me what I am truly capable of. I am capable of asking the public about childhood cancer, I am capable of spreading awareness via social media, and I've shown myself that I am capable of whatever I desire to do.

I want to thank all of you for your endless support and encouragements. I couldn't have made 2016 such an amazing year without all of you guys. I'm excited to see what 2017 has in store for me.

Lets cheers to a happy and healthy 2017!

Love Ellie and Evie!xxx
 Go checkout Evie's blog post here, Evie has just gone into remission from Hodgkins Lymphoma, she's had a tough year but she has been tougher!

My experience at 10 Downing Street. | TeamEllie

There is a lot of things I thought I would experience in my life such as Sky diving, meeting a celebrity and going to America. But I would have never thought I would get the honour to visit 10 Downing Street and meet the Prime Minister! I remember receiving the invitation and thinking "Is this real?". It was a great evening with amazing people and an amazing charity.

Approaching the 10 Downing Street door was an iconic moment for me because it seemed so unreal. It has always been something I have seen on TV, never would I have dreamed of being so close to the real thing. Entering 10 Downing Street immersed me into a hallway of grand chandeliers, beautifully painted ceilings, and walls filled with magnificent portraits of previous Prime ministers. Me and mum had to put our phones into a cabinet (No photography allowed in 10 Downing street) and we got our coats taken away. The service was great!

We entered a marvellous room filled with people mingling. It was quite overwhelming at first because I didn't know where to go or who to talk to. Through the crowd I spotted a young girl, I was happy there was another child too, so me and mum went over to them. This young girl, Kayla, was in fact the girl who appeared in the same Sarcoma Uk magazine as me and we had the same cancer too. We got on so well and hung out together for the rest of the evening. The atmosphere was great. We were looked after well with constant refills of drinks, and served with loads of different canapés - all of which me and mum couldn't eat because they contained meat! 

Halfway through the evening The Prime Minister, Theresa May, made her appearance! Me and Kayla were only a foot away from her! Firstly, an executive from Sarcoma Uk made a fantastic speech explaining the work 10 Downing Street have done for them. Secondly, Theresa May delivered her speech, she was a lot different to what I thought. She was very well-spoken and even added a bit of humour into her speech - I thought all politicians were supposed to be boring! It was a very so real moment. After Theresa finished her speech me, mum, Kayla and Kayla's dad got to have a picture with her. We told her that we were both suffering from childhood sarcomas. I really wanted to say my request to Theresa May to increase childhood cancer funding, but unfortunately I couldn't because soon enough she was whisked away by other people.

Theresa May wasn't there for long, but it was an unforgettable experience. Me and Kayla explored into other rooms and even sat on the same sofa that Obama once sat, and we did a handshake where the handshakes between political leaders happen. There was a room which had big portraits of Queen Elizabeth. There was also a room with a central table surrounded by cabinets of old books, and on the table was a phone, me and Kayla were tempted to give our friends a surprise when they got a call from 10 Downing Street, but we decided against it because we probably would get a big telling off!

The party came to an end and we went and got our things ready to go home. On the way out we saw 10 Downing Street's house cat called Larry, he was so cute and me and Kayla got to stroke him! When we got out, we took some photos outside the iconic 10 Downing Street door. It was a fabulous night and was definitely an experience of a lifetime!

To finish off this blog post I want to say a massive thank you to the charity Sarcoma Uk for inviting me, it was such an honour. Sarcoma Uk deserves all of this so much because they are an amazing charity which aims to change the prospect of survival for sarcoma patients. Sarcoma Uk helped me tremendously to deal with my Sarcoma.

This night was definitely a tick off the bucket list!

Thank you for reading.

Love Ellie xxx

What is maintenance chemotherapy?

On my social media I get a lot of queries and questions about my maintenance chemotherapy, as best as I try and explain it, it is still rather confusing, so I thought I would make a blog post all about it!

After completing 9 rounds of intensive chemotherapy and 28 sessions of radiotherapy, I started a year long maintenance chemotherapy regime. This consists of 12 cycles of chemotherapy: there are 4 weeks in each cycle, and I get chemotherapy via my port for 3 weeks of that cycle then a week off. This chemotherapy is called Vinorelbine. Also each morning I have to take an oral chemotherapy called Cyclophosphamide, unfortunately for me because my dosage doesn't come in tablets I have to have it in liquid - it tastes vile!!!!

My maintenance chemotherapy is going extremely well, I am feeling a lot better now and my hair is growing back. The start of maintenance chemotherapy had a lot of bumps in the road. Firstly, the radiotherapy was partly targeted at the bottom of my spine which is the part of the spine that replenishes blood, due to the radiotherapy that got damaged meaning my bloods aren't able to recover very well without support. One of the things that excited me about maintenance chemo was that I would no longer need GCSF injections (Injections that increase neutrophil count) - so I thought. After my first dose of maintenance chemotherapy I became neutropenic and my platelets dropped. This mean't I had to stop oral chemotherapy, I was off of it for 3 weeks because the doctors were waiting for my counts to rise but nothing happened. So I was forced back onto GCSF injections, I have them on a Monday-Wednesday-Friday routine.
Secondly, I am supposed to be on 100% dose of Vinorelbine but due to my platelet count dropping I am currently receiving 66% Vinorelbine. We have talked about increasing the dose to 80% but my consultant does not think it is a good idea. Of course this isn't the ideal situation as I would rather be receiving my maximum dose, but I want my body to stay well so it is for the best.

Not all Rhabdomyosarcoma patients receive maintenance chemotherapy. In England, you receive maintenance chemotherapy if you have stage 4 Rhabdomyosarcoma. This is because stage 4 rhabdomyosarcoma has a high relapse-rate. The maintenance chemotherapy is less harsh doses of chemotherapy that makes sure all the cancer cells that scans can't show are gone. Even though it is annoying that the maintenance chemotherapy adds nearly an extra year to your protocol, it is very important for stage 4 rhabdomyosarcoma patients because it helps keep the cancer away.

I am currently on my 9th out of 12 cycles of maintenance chemotherapy, I can definitely say that all of this treatment has taken a battering to my body. Most days I feel achy and tired, it is gradually getting worse as the cycles go on. Back in September I was able to do 2 full days at school pretty easily and not feel too bad. However, now I feel exhausted after 2 full days at school, all I can do is lay in bed. School is becoming more demanding so it will be hard to keep up with school and my fatigue, but I am determined to do as much as I can and fight through the aches and pains.

I hope this blog post has made you understand what maintenance chemotherapy is. If you are going through it or will be soon then stay strong and stay determined!

Thank you for reading!

Love Ellie xxx

How to cope with your cancer diagnosis

CANCER. I couldn't believe it. The shock was unreal. Why me? How could this happen to me? Why did this happen to me? Am I going to die? What will I look like bald? How are my family going to deal with this? Getting you cancer diagnosis is the scariest thing, because you really don't know what the future will hold, I sure didn't. When I got diagnosed with cancer I had many ways in which I coped with it, I want to give you my advice and tips.

All these possible outcomes and endless amount of questions fill your mind uncontrollably, it is hard to get away from them and it can make you feel very stressed. Right from the beginning I realised that there was no benefit in trying to think of what the future would hold for me, it only made me even more paranoid that I may not survive this fight. I stand by the words of my mum, she always told me "Live for today, don't worry about tomorrow.". This helped me a lot because it made me focus on the present and live everyday to the full.

Let people be there for you. Don't feel like you cancer diagnosis should be kept as a secret, it will only make it a bigger burden for you. Tell your loved ones and close friends, I am sure they will help you through this crazy journey and give you the support you need. One of the things I used to enjoy most during my intensive treatment was getting visitors, sitting around the house all day unable to go outside was extremely boring, so getting visitors was fun and would make me feel less lonely. During your cancer treatment you will more than likely not be able to go to school/work, so things get can really lonely sometimes, but having good company will cheer you up.

Positivity is the key! Positivity is hard to find when you possibly just got the worst news of your life, but feeling depressed will do you more harm than good. Having a positive mind helped me a lot, because it made me believe in myself and I was ready to fight my cancer no matter what. To feel more positive it is beneficial to focus on your family and friends, my family and friends helped me keep positive when I was feeling low and they were always there for me. Keep positive about your treatment, it may suck and make you feel bad, but just think of each chemotherapy/radiotherapy as another blow at the crappy cancer inside of you, I used to say to myself during chemo "Take that cancer!!!".

One of the best things that helped me cope with my cancer diagnosis was believing in myself. After I got my first chemo, which was a horrendous experience with a lot of complications, I should have felt depressed, but I just got on with it and I kind of realised that this was my life for now and I had to stay strong no matter what. When I got my head shaved and I looked in the mirror for the first time I didn't cry, I loved it, and I thought to myself "I look beautiful and I am ready to fight this!". Believing in yourself is one of the strongest mindsets to have, cancer is tough and it will be hard to stay strong all of the time, but as long as you remember that you are strong and brave you will be a strong cancer warrior and you will fight this cancer no matter what!

Cancer does not mean that this is the end. Think of cancer as the start of something new, you may not want it to happen, but fighting for your life will be a new chapter in your life. Before I got cancer I was your typical sporty teenager who loved school, but I had to stop all of that to fight for my life, and I actually call my fight 'My gap year', so I can put a positive spin on missing most of the school year. Getting cancer was a new start for me because it was a start of a new Ellie, I am still the old Ellie, but I have witnessed so many horrible things meaning that I can't be the same Ellie as I was before. I have realised the importance of life, what it takes to stay strong even when you feel like giving up, and I have been immersed into a new world which no person should ever have to go through. You are never the same after all of that.

I hope this blogpost has helped you cope with your cancer diagnosis. For those of you who have newly been diagnosed or are currently fighting, I wish you all the best and remember to stay strong.

Love Ellie xxx

Surely us kids deserve more than 1% Cancer Research Uk?

You see the cute cancer kids on the Cancer Research Uk adverts all over TV, but how much do we really benefit from it?

Out of a £404million budget, childhood cancer only received £5.5million research funding in 2015/16 from Cancer Research Uk. This equates to a measly 1.33% funding, it is so unfair and we deserve so much more!

Due to the lack of funding, we can’t afford to raise funds for life-saving research and new treatments that children with cancer desperately need. Therefore, children with cancer have to receive adult treatments which are so harsh on our small bodies that they cause long-term side effects, such as hearing loss and heart problems. And in some cases even death. This is NOT acceptable! 

Cancer research Uk are responsible for 60% of all kids cancer research taking place in the Uk. If they donated £5.5million in 2015/16 to childhood cancer research, our calculator tells us that overall, for the whole of the UK including all other research charities, childhood cancer gets less than £10million!

Cancer research UK, you are responsible for 60% of childhood cancer research, but giving us so little funding seems unresponsible to me. Face reality and help us kids, we deserve it as much as the adults!

I am very lucky to be NED. I am over the moon. However, I have stage 4 Alveolar Rhabdomyosarcoma, and that gives me a 50% chance of making it past the 5-year survival rate. It is hard to think about, because with more funding my perspective of survival could be much higher. What kind of childhood is it to have anxiety for every scan, to be scared that the cancer is going to come back? No child deserves this...

Essentially us kids are being featured on Cancer research Uk adverts to generate more donations that are unlikely to benefit us at all. Kids are supposed to be the future, but Cancer research Uk aren't raising enough funds to secure a future for children with cancer. Only 3 drugs have ever been developed for children's cancer, compared to hundreds upon hundreds of adult cancer drugs. Cancer research Uk, you need to step up and give children with cancer more funding, we matter too!

Please help children with cancer in the Uk by sharing this post, so we can raise more awareness to give children with cancer more than 1% and a better prospect of survival.

 We can beat childhood cancer together!

What it is like to have cancer as a teen.

Teens often think they are immortal, nothing bad could ever happen to them. So when the doctors said the word "Cancer", I was in a state of disbelief; I was never the ill kid, bad things didn't happen to me. I should be kissing boys, hanging out with friends, going to school and have no care in the world. Cancer took that away from me.

Having cancer as a teen is hard, as you are at that awkward stage in your life: you are young and still needing a lot of guidance, but you understand a lot about everything. Which is scary at times. Sometimes I wish I was a little kid, because they don't understand what cancer is and the risks that come with it. Not being able to understand cancer would be amazing, because you wouldn't get anxiety that it could come back, you wouldn't cry every time you think of how life used to be, and you wouldn't be scared to death of what the future holds. 

I am not sure about anyone else who received treatment as a teen, but it makes you feel a lot younger. It made me not feel like a teen anymore, it made me feel like a child, because I needed to be cared for 24/7 and I felt vulnerable without my mum. I used to call myself a 'big baby' because I was bald and being constantly looked after. It kind of sucked as your teenage years are supposed to be about freedom, but cancer locks you away.

HORMONES! If you are a teenager you have probably been referred to as the following: "grumpy", "moody" and "big attitude". Hormones plus stress, can bring out the worst in you. Just imagine what it is like for us cancer teens! We have a lot more stress than the average teenager, so at a time like this we can get extremely distressed. I used to get agitated quite a lot if things didn't go my way or I was tired. The hardest thing for me was the stress building up causing me to have anxiety and depression. It was a very dark time for me. I would not want to do much, I would lay in bed all day feeling depressed and I would be on edge all the time with the anxiety. I especially got tearful a lot, if I felt like someone was trying to start an argument with me, be mean or even mentioned something I didn't like; I would break down in tears. Teens with illnesses go through such a hard time, because they are naturally anxious anyways due to hormones, I can completely understand how tough it is.

The hardest thing for me was missing school. I was very liked at school and I enjoyed it so much. I was a librarian, school council, on the sports teams and I was in top sets. So when I wasn't able to do it anymore, it hit me so hard and I missed it greatly. I would look through my classmates' snapchat stories and see them having fun at school, it tore shreds into my heart when I looked at those snapchat stories, as that should have been me there enjoying school with my classmates, but instead I was locked away in hospital.

I used to always day dream about what I would be like and all the great things I would be doing if I didn't have cancer. I don't think about that anymore, because I like to make the most of the present. Yeah, I know Ive got cancer and that sucks a lot, but I have learn't to accept it and I have realised that the present me is more important than the Ellie who was never supposed to be.
I embrace the fact I have cancer, I am proud that I have cancer because it has made me the person I am today. It has made me realise my full potential: I CAN inspire others, I CAN write a blog, I CAN do youtube videos, I CAN beat cancer and I CAN do anything my heart wants me to do! It has made me realise that other people's judgements aren't necessary. I would have never of done a youtube video before, as I would be too scared of what other people would think. Please do the things that YOU want to do. Teenagers can experience a lot of pressure to do certain things and be a certain way, but don't stop your dreams because of the people around you.
Cancer has stolen my childhood and has forced me to mature quicker than the average teenager. Cancer has opened my eyes to the fact that your life could change for the worst in a click of a finger. It has made me realise that you need to live every second to the full, because you don't know when it could end. Cancer has made me realise that life is so precious. You need to do things for you, do things that you won't regret and help others.

Thank you for reading this blog post. Being a teen with cancer is tough at times, but we realise that all you can do is be strong and pull through. Spreading love to all the Teen cancer warriors and survivors out there!

Ellie xxx