This month’s mama is dedicated to Emma @mamaandtbear – mother of 18 month old Teddy who has been diagnosed with stage 4 rare and aggressive form of cancer called Neuroblastoma. They have 3 months to raise £400,000 for a chance of survival. Emma is hoping this interview will raise more awareness and donations, so please read on, share and donate.
- Tell us a little bit about yourself, name, occupation, children etc.
I’m Emma Mayo and I live in South East London with my fiance Jamie, my 18 month old son Teddy and Frank the black lab. I’m a primary school teacher and I was teaching Reception before having to give up work to care for Teddy full time.
2. When and why did you take Teddy to the GP thinking it was more than a ‘virus’?
Teddy was always happy and healthy, but in February he got an ear infection which led to what the GP thought were a series of viruses. As he had just started nursery and it was the winter the doctor said it wasn’t unusual for someone of his age to get virus after virus. He was up and down but by April he wasn’t wanting to crawl or play, instead he just wanted to sit on our laps and watch TV or go to sleep. Then his appetite started to go and we noticed he looked very pale.
We went on holiday to the Canaries and he definitely wasn’t himself, he was clingy and sad and spiking temperatures at night. That’s when I knew it must be something more. I took him to the GP when we got home and although she had no idea what was wrong she knew he wasn’t right and sent us straight to hospital to get checked out.
3. What were your initial thoughts?
When we first arrived in A&E I wasn’t that worried. I just thought maybe he would need some stronger antibiotics. I wasn’t expecting anything really serious. The word cancer wasn’t even on my radar (or the GPs).
4. What was the outcome?
Very quickly the consultants in A&E found an unusual mass in Teddy’s abdomen and identified that he was severely anaemic. We were quickly sent for lots of scans and admitted and by that evening Teddy was receiving his first blood transfusion. The next day we were told the news. Cancer. We were told that actually Teddy had Neuroblastoma, a very aggressive cancer with a poor prognosis. Teddy’s Neuroblastoma is high risk stage 4 with MYCN amplification, which is the worst diagnosis possible. His chance of survival is about 30-40%.
5. What does this mean?
Neuroblastoma is a very aggressive cancer that affects about 100 children a year in the UK. Teddy will receive very intensive treatment over a year including chemotherapy, surgery, high dose chemotherapy, stem cell transplant, radiotherapy and immunotherapy. This was the treatment plan we were given in April. In May we found out that NICE have decided not to fund the immunotherapy, which was being accessed in the UK via trials up until now. Immunotherapy is a revolutionary treatment producing very good results that is now a standard of care for children with Neuroblastoma across America and Europe. The problem is the drug is deemed too expensive to buy for the NHS and we are now faced with having to raise hundreds of thousands of pounds to pay for it ourselves.
6. How can we help? How has the Instagram community helped?
Since Teddy was born I’ve used Instagram as a platform to write about being a new Mum and post my favourite photos of him. When he became ill I decided that I would carry on documenting our lives. The support I have received from the Insta community has totally blown me away. I receive the most wonderful loving and supportive messages from total strangers that really have helped to keep me strong in the darkest of times. The amazing people of Instagram have also thrown themselves into helping us with the fundraising for Teddy’s treatment and I’m totally overwhelmed by the kindness we’ve been shown. Thank goodness for Instagram!
7. How is Teddy doing?
Teddy astounds me every day with how well he is coping. We initially spent three weeks in hospital where he became increasingly poorly as the large tumour pressed on his internal organs. He ended up in intensive care needing to have his chest drained. At that point I thought we were going to lose him. But as soon as he began the chemotherapy and the tumour started to shrink he started to bounce back. He’s taking it all in his stride and from his energy you would never believe he was on such an intense chemotherapy regime.
8. How are you coping?
I’m definitely up and down. At the beginning I found it very hard to cope, but now the reality of the diagnosis has sunk in I am just trying to make the best of a horrible situation. I’m able to stay positive most of the time, with the support of my wonderful family, friends, and of course the Instagram community. Teddy’s incredible strength keeps me strong. But there’s no choice other than staying strong and positive…he needs me.
9. What changes (if any) would you like to see on the NHS?
We have received the most wonderful care and support from the NHS. The wonderful nurses who care for Teddy, keep him calm alnd make him laugh, the play specialists who keep him distracted from procedures, the psychologists who are helping support Jamie and I, the kitchen staff who help think of food to tempt him to eat, and the doctors who plan his care. Not to mention the dieticians, radiographers, porters, and cleaners.
But the way that NICE decide whether to buy drugs just isn’t fair. They don’t debate that the immunotherapy is working, describing the drug as having shown ‘promising clinical benefits’ but as the drug is so new they don’t have enough evidence to prove long term survival and so deem it too expensive per year lived.
10. What advice would you give to a mother who may be going through the same thing?
I would say don’t be afraid of asking for help. In fact actively ask for it. We couldn’t have done this without the support of friends and family, who have run errands for us, got our house sorted while we were in hospital, fed us and made us go to bed and sleep. You need a good support network around you because there are going to be tough times. At the beginning you won’t be able to imagine getting through it but there’s a Bob Marley quote that says “You never know how strong you are until being strong is the only choice you have”.
On Wednesday July 18th
, Teddy’s family and friends are holding a fantastic charity event all to raise money towards Teddy’s treatment to be held in Clapham. Tickets can be bought here
and the prizes people have donated for the auction are incredible!!
This video show’s Emma, Jamie and Teddy at home – please watch this too and share!
As some of you know, my young son Teddy was recently diagnosed with stage 4 neuroblastoma, an aggressive type of cancer with a poor prognosis. We are having to fundraise to get Teddy treatment which has been withdrawn on the NHS and need to raise up to £500,000. Many of you have so generously donated but we still have a long way to go to reach our target.Please like and share this video to help get Teddy the treatment which could save his life. Thank you.https://www.justgiving.com/campaigns/charity/solvingkidscancer/teddy-mascaro
Posted by Jamie Mascaro on Wednesday, 27 June 2018