FIGHT FOR PHOENIX
2016 wasn't all bad! In fact there were miracles if you knew where to look. CANCER SUCKS!
I am 38 years old. I've been having cancer treatment for the last 4 and a half years. My cancer is incurable. Quite honestly, it's been rubbish and my life (and that of my family) has been torn apart by cancer.
The past 4.5 years have slowly stolen the person that I was before. Before my cancer, I was a confident, outgoing, independent, active person with a thirst for adventure. Since the gruelling endless rounds of chemo and radiotherapy treatment, I feel like a shadow. I've lost both my breasts, I've lost my beautiful long hair, I'm covered in scars from all my surgeries, I've gained 4 stone in weight, I can no longer work, I was told I could not have children and, worst of all, I have lost my youth and my confidence. I wake up every day exhausted and in pain. Yet each day I get up and put a smile on my face for the ones I love. MIRACLES HAPPEN!
3 years ago I was given only 2 years to live! Despite all this, and against all the odds, in July 2016 I was told that despite being on daily chemo I was 18 WEEKS' PREGNANT
. I'd been told the chemo had made me infertile and I had stopped periods a year before. Obviously, this news was a complete shock. It turns out my "pizza belly" was actually a "baby belly"! My poor baby had been exposed to chemo on a daily basis his whole life and had been irradiated twice with cancer scans. I spent a month going back and forth to hospital to discuss the implications. I was told repeatedly that I should terminate as the risks of serious defects were too high. Despite all I've been through, those 4 weeks were the worst of my life. My personal beliefs made it very difficult to put my life above that of my baby. I told the doctors that if he had any chance and I could be treated safely, then I wanted to try. In the end, after thousands of checks, my amazing doctors told me the baby seemed fine; I could change chemo; continue treatment; and have my baby.
So, on 09 December 2016 at 10:14pm my husband and I welcomed Phoenix Joseph Johns
to the world. A little premature and by c section. I was awake and my gorgeous husband Matt was with me. And it was the most beautiful "emergency" I've ever experienced. This baby is a miracle. He has been through more terrible things than most people will experience their whole lives. Yet he is the calmest, happiest little creature you could ever meet.
In order to give birth safely I had to stop my treatment and, as a result, my cancer progressed to my hip and lower spine. In the last few months whilst I've been getting to know my "little beastie" better I've been rushing back and forward to hospital for radiotherapy and chemotherapy. My type of cancer (triple negative breast cancer) is very aggressive; grows very quickly; has a poor prognosis; and doesn't have any targeted treatments, so these are my only options. I have tried 5 previous chemo drugs and I'm fast running out of options. WONDER DRUG!
However, there is some light at the end of the tunnel, (apart from my little pudgling's smiling face). A trial immunotherapy drug called Pembrolizumab. It's showing amazing results for women with incurable triple negative breast cancer, with some women having a complete durable response and effectively having no evidence of disease. I'm not saying it's a cure but it's close!
Due to my pregnancy I missed out on being eligible for the only trial ongoing for this drug. However, I can pay for it privately....for the eye watering sum of £40,000!!!
Like any woman in my place I am desperate to see my 4 month old baby grow up, become a good person, find love with whoever he chooses and generally make the world a better place. My husband works extremely hard to keep our little family afloat all by himself and, as I am unable to work, we have spent all of our savings over the last 4 years. I'm therefore asking you to help me with another miracle
; to donate whatever you can to help me fight for Phoenix and be with him through his childhood and beyond.REMEMBER THE IMPORTANT THINGS
Thank you for reading this. I know life can seem rubbish sometimes but please remember the important things....the people you love. There is always something good waiting around the corner, no matter your circumstances, you just have to recognise it.
We are amazingly grateful for reaching our original goal so quickly and for the ongoing support. Having been to see the specialist we now know the costs will be higher than expected (I now have to fund the chemo, as well as the immunotherapy, privately). Our original goal of £40,000 is enough to fund the first year of immunotherapy treatment only. If we are to cover my chemo costs, the GoFundMe fees (7.9%) and my immunotherapy for the second year we are now likely to need £75,000 or more.