We NEED chemotherapy specifically for children!

We need your help to raise funds so we can create less harsh chemotherapy treatments for children. Children with cancer are receiving toxic adult chemotherapies which are so harsh on our small bodies they cause long term side effects, such as hearing loss and heart problems. But in Sydney's case the chemotherapy actually killed her.

Sydney was a very loving person, she was your typical teen - she loved surfing, hiking and painting. She was truly beautiful inside and out, she would light up the room when she came in.
Sadly, Sydney's family learn't on November 3rd 2015 that Sydney had Burkitts lymphoma, 3 large tumours were found in her abdominal area. Immediately Sydney started her first out of 6 rounds of chemotherapy. Sydney had scans after the third chemotherapy treatment and her oncologist said there was no evidence of disease - everything was looking up!
Shortly after Sydney's 6th and final round of chemotherapy, she was having what appeared to be side effects from the chemotherapy. Sydney had a fever early in the day, but nothing too high. The fever went away, however Sydney started vomiting when she went to bed. Sydney got up at 3:00am to go to use the bathroom, she was off balance. She went into the bathroom, shut the door and collapsed. Her mum ran into the bathroom, got Sydney out and laid her on the bed. She was barely breathing, then stopped, so her dad started performing CPR. The paramedics arrived and got Sydney's heart beat back, but had to breath for her. This continued in the hospital throughout the day. They declared that Sydney was brain dead. The chemotherapy killed multiple segments of Sydney's intestines and part of her stomach. The intestine ruptured the moment in the bathroom and poisoned her whole body to the point of full body shut down.

Sydney sadly passed away on March 18 2016, six short months after diagnosis.
Sydney will always be remembered for her loving,
strong and happy spirit.
RIP Sydney.

Sydney went too soon. This is why we need less harsh treatments. Sydney is a very rare case, however Sydney's story shows how toxic the treatments really are on children's bodies.
For instance, when I got radiotherapy they said I had a risk of developing cancer in later life because of the radiotherapy! The treatment that kills the cancer can actually give you cancer. How does that work?!
When do we stop and realise that a change needs to happen? With only 3 chemotherapy drugs specifically made for children, we deserve so much more! Please help raise funds for childhood cancer research charities, so the research can be made to make chemotherapy drugs for children, which are less harsh on our small bodies. Let's make a change for families like Sydney's, who have really felt the pain of the effects of adult chemotherapies on children.

Love Ellie xxx

How can you help children with cancer this September.

September is Childhood Cancer Awareness Month, it is such an important month for children with cancer, like me, because we can have the chance to be heard. However, we can't do it all alone - WE NEED YOUR HELP!
Childhood cancer only gets 4% funding, therefore we have a lack of funding, meaning we have to receive adult treatments that are so harsh on our bodies it causes long-term side effects, and in some cases even death!
With your help we can fundraise to raise funds for life-saving research. And most importantly, spread awareness! With your help of spreading awareness we can show everyone the truth to childhood cancer, after all it is the No1 disease killer of children in the USA, so we desperately need more funding. Together, we can help children with cancer have a chance in life and not have to endure such harsh treatments.
I am hoping that by now you have made the righteous decision to help children with cancer this September, but how can you help?

Fundraising ideas:

• Bake sale.
• Sponsored run/walk.
• Coffee morning.
• Non-uniform day at school.
• Wear gold for the day.
• Karaoke night.
• Quiz night.
• Raffle.
• Sky diving.
• Head shave.
• Cinema screening.
• Dance/disco.
• Sell your unwanted items.
• Sponsored silence.
• Tuck shop.
• Talent show.

Help us spread awareness:

• Take a video of your self saying 'More than 4% for childhood cancer.'. Share it with your friends and family on social media, and get them to take part as well.
• Re-post pictures and articles about childhood cancer on social media.
• Tell your family and friends about Childhood cancer awareness month, and get them involved.
• Wear a childhood cancer ribbon pin. 
• Do an assembly at school.

Who to fundraise for:

It can be a hard to decision who to give the money you have raised to. I would recommend giving it to a childhood cancer charity, or a children's cancer ward, or to a child you know who has been affected by cancer. (Links to fundraising sites will be at the end of this post)

• If you want to donate your money so you can help families affected by cancer and help keep charity hospital houses running: I recommend donating to 'CLIC sergeant' (UK).
• If you want to help teenager's with cancer: Donate to 'Teenage cancer trust' (UK) or' Teen cancer America'.
• To help fund research for childhood cancer: 'Children with Cancer Uk' or 'American Childhood cancer organisation' or 'My room' (AUS)
• If you want to raise money for a specific childhood cancer, search on the internet for one.
• Donate your money to a charity who gifts presents and wishes to children with cancer: 'Chelsea's Angels' (UK) or 'Make a wish' or 'Star light' 
• Donate to a childhood cancer ward: Find out your nearest childhood cancer ward and grant them the money.
• When I began my cancer journey a team of mums from the school set up #TeamEllie which was amazing, because they got a lot of people to fundraise for me, so when I was well enough I could afford to go on holiday and do the things I have always wanted to do. You could also do this for a child with cancer you know, it will make them so happy.

Please fundraise and spread awareness for children with cancer this September, thank you.

Ellie xxx

Links to childhood cancer charities:

Clic sergeant: http://www.clicsargent.org.uk

Teenage cancer trust: https://www.teenagecancertrust.org

Teen cancer America: https://www.teencanceramerica.org

Children with cancer UK: http://www.childrenwithcancer.org.uk

American childhood cancer organisation: http://www.acco.org

My room: https://www.myroom.com.au

Chelsea's angels: http://www.chelseasangels.co.uk

Make a wish: https://www.make-a-wish.org.uk

Star light: http://www.starlight.org.uk

Help find childhood cancer sooner + collab | Childhood cancer awareness month 2016

My mis-diagnosis process all started when I told my mum about a lump in my bottom, which had been there for months, but I was too embarrassed to tell anyone. The next day I went to the local GP, so he could check it out and he said it was most likely a perianal abscess, and prescribed me with a 7 day course of antibiotics.
After the 7 day course of antibiotics was over, we went back to the GP and I told them that the lump was infact getting bigger. But yet again I was prescribed another 7 day course of antibiotics!
After 3 days on the second course of antibiotics, I was in a lot of pain, I couldn't sit down because of the size of my lump, I was having extreme constipation, and I was even having trouble urinating. Yet again we went back to the GP and luckily we had an amazing doctor, she took one look a the lump and straight away admitted me to the hospital for a perianal abscess removal operation. It was a relief when she admitted me, but little did I know it was so much more serious...

On September 18th, I was told that I had stage 4 metastatic Alveolar Rhabdomyosarcoma. Due to misdiagnosis my cancer spread so much more than it should have done, ultimately making it stage 4. It is hard for me to think of that, as we could have caught it so much sooner if the doctor was aware of the signs of childhood cancer. Unfortunately, this is the same case for many children with cancer, the doctor doesn't expect cancer in a person so young, so they don't even think of it as a possibility, but it can happen! This is why we need to spread awareness, so we can diagnose children early, increasing their chances of survival.

When you are told your child has cancer, you are in a state of shock. It's another kid who gets cancer, not yours. It is completely understandable to be shocked because it is rare, so no one knows about it, but is that really how it should be? Think about it. If everyone knew the warning signs of cancer and actually accepted that it could be a possibility for their ill child, then children could be diagnosed earlier. Im not trying to say that you should open up every bruise, headache and pain as a possibility of cancer, but you shouldn't not think of it. Basically, you shouldn't think "That won't be my kid." , as you never know. The more awareness we spread of childhood cancer the better, so we can give parents the incentive to take their ill child to the doctors earlier, therefore promoting early diagnosis.

Symptoms of childhood cancer

• A lump or swelling
• Swollen glands
• Frequent bruising
• Unable to wee or blood in the wee
• Back pain that isn't going away
• Unexplained sweating or fever
• Persistant headaches
• Unexplained tiredness
• Unexplained seizures or changes in vision or behaviour
• Unexplained vomiting
• Abdominal swelling or pain all the time
• Unexplained weight loss or loss of appetite
• Changes in appearance of the eye or unusual eye reflections in photos 
• Frequent infections or flu-like symptoms

I did this blog post as a collab with my good friend, Evie, we have collabed before. Evie has Non-Hodgkins lymphoma and she has also experienced mis-diagnosis, go check out her blog post so you can ready her story and her advice.  Click here to go to Evie's blog

BE CHILDHOOD CANCER AWARE!

Feeling stressed out...

At the moment I am in a positive place with my treatment. I'm doing fine. So now my attention is directed to everything else that isn't fine. I feel like I have the whole world on my shoulders. I am stressing about my mum, as she is constantly in pain and the doctors aren't sure why. I get stressed out when my parents argue. I get stressed about the future. I get stressed out about the things I can't control.
 Some of you may know that ever since I have been in cancer treatment, I have become a bit of a control freak, so things that I can't control really worry me: My mum's illness, relapse, being passenger in a car, etc.
I guess it is all just taking its toll on me, I woke up this morning from a terrible nightmare that my mum's pain was caused by a cancerous tumour. It really upset me, and my mum being in pain is scary as I constantly think of worst case scenarios, because the worst case scenario happened to me.
I am stressing because I want everything to be fine, but I need to learn that not everything can be fine all the time.
For now, I am just going to try and not let everything get to me, and start focusing a bit more on me. I will still worry and stress, but I hope I can work my way through it, like I did with my anxiety. Hopefully I can see my therapist soon, so she can help me through it.

Thank you everyone for reading this post, I really just wanted to get my feelings out to you guys. Hopefully soon I can say I conquered stress, like I did with my anxiety, and help any of you guys who are dealing with stress too.

Ellie xxx

Chemotherapy: What to expect

Chemotherapy.

We connote the word Chemotherapy with the loss of hair, nausea, pain and cancer. It can be extremely daunting, you see it on the TV and on the news everywhere. You try to gear yourself up for the loss of hair, and the nausea and the pain, but really you probably haven't experienced anything like it in your life; so how do you know what to expect?

That's the thing, you don't know what to expect. I most certainly didn't, but you just have to be strong and be prepared to fight whatever comes your way.

Preparing for chemotherapy
Come a few hours early to chemotherapy so you can get your bloods done. Or if you are like me and have blood done the day before, arrive when they recommend you to. They tend to check your vitals and weight/height when you arrive also.
 I for one know how hard it is to go into the hospital to receive drugs which make you feel so ill, so take your time to relax before your chemotherapy appointment, try to stay calm and take your mind off of it. It's great to have a friend or family member come with you, as they can be great support to you and take your mind off of the chemotherapy.
When you are able to get your bed/chair, make yourself as comfortable as possible. Also, make yourself at home, most hospitals provide you with TV access, and food service if you are peckish!

Starting your chemotherapy
The nurse will have ordered your medications and chemotherapy drugs at the pharmacy, and that usually takes up to an hour to arrive. I would recommend starting mouth washes just before you start chemotherapy to prevent mouth sores.
The chemotherapy is administered through your vein so the nurse will need to access the cannula in your arm, your port a cath or Hickman line. If you have a port a cath or cannula, they access with a needle - to avoid the pain I would recommend using numbing cream or cold spray to numb the area. The nurse will give your pre-chemotherapy medications, and then set up your chemotherapy infusion on an IV stand.

During chemotherapy
A chemotherapy infusion can take anywhere from 5 minutes to 8 hours, so you need to make sure you are comfortable and have entertainment. During chemotherapy you can relax, socialise with the other patients, watch TV etc. The nurses will have to keep checking your vitals to ensure that you are not having reactions to the medications or chemotherapy.
You can go outside, however you can only go outside with the flush on your IV stand, not chemotherapy.
During chemotherapy I recommend doing mouthwashes every couple of hours, if your are susceptible to mouth sores, it really helped prevent my mouth sores.
During chemotherapy keep a sick bowl close, as a main side effect of chemotherapy is nausea, and you don't want to throw up everywhere! I am not certain whether adults have to do this, but the kids & teens have to wee and poo in a carboard container called a bed pan, so the nurses can keep an eye on whether we are flushing out all the chemotherapy and fluids given to us. If that is the same with adults, remember to take a bed pan with you to the toilet.
When the chemotherapy is finished the nurse will flush your IV with saline and deaccess you Portacath or take out your cannula. Then you will have to wait 30mins to an hour before being discharged, so the nurses can ensure you are well enough to go home.

After chemotherapy
After chemotherapy go straight home and rest. My chemotherapy made every bit of energy come out of my body, I felt like I had just been hit by a truck, so rest is definitely important. Try and drink lots of fluids, a lot of my cancer friends recommend drinking energy drinks. Eat whatever you crave, I used to crave potatoes after Chemotherapy!
Also, continue mouthwashes at home every few hours until the mouth sores are completely gone. Sometimes the nurses give you anti-sickness to take for a day or so after chemotherapy, taking them is important so you don't get nausea.

To those of you who are reading this that are about to endure your first chemotherapy treatment: Stay strong, I know how hard chemotherapy is, there is times when you just want to give up. The end may feel so far, but you just have to look at the light at the end of the tunnel. Show cancer what you are made of!!!

Thank you for reading,

Ellie xxx

What is sarcoma? |Sarcoma awareness week 2016

When my parents told me what cancer I had, it was weird, because I actually knew what the hidden beast was inside of me. It seemed unreal, as out of all of the 200 different types of cancer, I got SARCOMA!
Sarcoma is that cancer that not many people know about, did you know that in a survey only 47% of people had heard of sarcoma, and only 26% actually knew it was a cancer! I am certainly not surprised of these figures, as myself went through numerous GP visits and an abscess removal operation until they twigged that it was sarcoma. And for many other sarcoma patients this is also the case, as sarcoma patients visit their GP more times than those with any other cancer before being diagnosed. Doesn't anyone else see the problem here? We need to spread awareness now, and fast so we can promote early diagnosis!

So let's talk a bit more about this pesky cancer that grows in soft connective tissues, bone and nerves. Before we start, I got all of this information from an amazing charity called Sarcoma Uk, they are a charity which spread awareness for sarcoma and they are such a great team, if you have any more questions about sarcoma you can ask them on their help line or via email. For more information visit their website https://sarcoma.org.uk

What is a sarcoma?

• Rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissue. There are many types of sarcoma:
•  Bone sarcoma
• Soft tissue sarcoma 
• GIST (In the gastrointestinal tract)
• Gynaecological sarcoma
• Retroperitoneal sarcoma (Deep into the pelvis, where the kidneys, pancreas and bladder are located.)

Facts and figures

• There are around 100 sub-types of sarcoma.
• 10 people diagnosed in the UK everyday!!!
• In general patients with sarcomas tend to be younger.
• Sarcomas make up 15% of children cancers (0-14) and 11% of all cancer diagnoses in teens and young adults (15-24).
• Every year 3,300 people are diagnosed with soft tissue cancers including GIST in the UK.
• 500 people are diagnosed with a bone cancer each year in the UK.

Symptoms and diagnosing sarcoma

Be 'On the ball' when it comes to learning the symptoms of sarcoma! Sarcoma UK launched a campaign called 'On the ball' to spread awareness about the symptoms of sarcoma to GP's, because GP's are usually not aware of the red flag signs of sarcoma. Typically a sarcoma appears as a lump, if diagnosed under 5cm usually you will be treated successfully, however many sarcoma patients aren't diagnosed until the lump is 10cm. This is why we need to spread awareness, so we can promote early diagnosis.

When diagnosing Sarcoma, like many other cancers you have to go through a lot of tests, such as:

• Clinical examination.
• A scan- taking pictures of inside the body using ultrasound MRI, CT, x-ray, PET or EUS.
• A biopsy- taking and testing tissue sample.
• A bone scan- to test for primary bone sarcomas.

Overall, I hope you have learn't about sarcoma from this blog post. For me it is so important that you share information about Sarcoma and donate to Sarcoma UK as SARCOMA NEEDS TO BE HEARD! As a result of misdiagnosis, my cancer spread to many places- it started in my left bumcheek, it grew throughout my pelvis, into my lymph nodes and into my bone marrow. For me it is scary that my cancer has spread so vast as it gives me a higher chance of relapse. So please share this post, go to Sarcoma UK and spread awareness!

Mixing friendships with cancer

Losing friendships due to something you can't control is hard, it is as if they can't accept the new you anymore. Cancer has put a strain on many of my friendships. Before I got cancer, I had my two best friends and I had several other close friends. My two best friends are absolutely amazing, they have stuck by me throughout and they make me feel normal again. However, my other friends distanced themselves from me, and now when I speak to them it is as if I am a stranger, they can barely even talk to me! Cancer is one of them things, even though it is common it is extremely feared of, so I think some of my friends just are not sure what to say to me anymore.

Although I have lost friends, I have also made friends. There have been people who have reached out to me and they have been so supportive. It definitely shows how amazing some people can be, my close friends didn't bother with me, yet a total stranger did...

Friendship advice

Regular meet-ups with friends- Cancer can be such a lonely place, so regularly meeting up with your friends is a great idea! I see my friends every week and it is so fun & gives me a bit of normality.

Losing friends- It is tough losing friends over cancer, as you can't help it. However, the way I see it is that if they are so shallow to stop being friends with you due to cancer, they aren't worth your friendship & they obviously are not your real friends.

Fake friends- I have found that some people who weren't even my friends before cancer, started messaging me saying how sorry they were for me and how they would be there for me and would visit me. I understand people want to support me, but all I needed right then were my real friends. And most of the people who messaged me just wanted my friendship for popularity, so they could say "I went and visited Ellie today, I'm such a great person." Also, none of those people ever messaged me again after a month or so after my diagnosis, so they are definitely FAKE FRIENDS!!!

Cancer friends

I find having friends who have cancer really helps a lot. My friends are amazing, but they can't completely understand what I am going through. I have a few friends from the teen cancer ward, but mostly via social media. Social media is an amazing way to find people the same age as you going through cancer. I have met so many people, and most of them I still talk to! I love talking to them as they completely understand what I am going through.

I would definitely suggest making friends with children your age in your cancer hospital ward, or use social media. To find cancer people on social media join Facebook groups, and I recommend finding cancer kids on childhood cancer awareness Instagram pages.

This blog post is a collab with one of my amazing cancer friends who I met on social media, she is called Evie, she has Hodgkin's lymphoma. Like me, Evie definitely knows the strain on friendships with cancer in the mix, so we worked together and we both made a blog post about Mixing friendships and cancer, go check out her blog too!
Evie's blog: http://loveeviex.blogspot.co.uk/?m=1
Evie's instagram: @evie_shallom

'Friends don't let friends fight cancer alone!"

Thank you for reading and I really hope this blog post helped you.

Ellie xxx