Save my Papa ❤️ Stage IV Cancer...

Sometimes even Superheroes need help.
 
When children grow up, they have all kinds of superheroes they look up to, as a little girl I made up my mind, quite early on, that my favourite of them all was... my papa. From as early as I can remember, I thought my dad was invincible. I was and I am continuously in awe at his incredible generosity, kindness and wisdom, every day I was, and I am so thankful to be blessed with such a best friend. The thought of losing the biggest inspiration in my life, had never crossed my mind… Like in all the films, the hero’s always come out on top – don’t they?  
 
I remember how he taught me to ride a bike without stabilisers, by running down the hill alongside me; when I was learning to swim, he walked along the poolside every length I swam; every time he introduced me to the music he loved, we’d turn up the volume in the car, and sing at the top of our lungs & we dance every day. He taught me his profession his love of cameras and photography. I remember him having the patience of a saint when teaching me to drive; his unwavering advice, love and support through school, getting into university & everything else in-between.
 
But more importantly he continues to show me how to live my life to the fullest, even though his is likely to be cut short. 
 
I remember how my world fell apart on July 6th, 2017 – when my superhero was diagnosed with a rare from of Stage IV Lung Cancer (after never smoking once in his life) . Below explains how that came about…
 
Papa visited the doctors on numerous occasions from April 2016 with a continuous cough, crackling when breathing and pain in his chest for which he was prescribed antibiotics and an inhaler, for a supposed asthma condition.  Despite the doctor’s lack of urgency, dad’s health and symptoms worsened, suffering from heart palpitations, general malaise and breathlessness upon walking - repeated visits to his regular GP failed to identify the problem. Over a year later and at the insistence of my mum, dad again went back to the doctor, this time a locum GP saw him. Upon examination and sounding his chest, she immediately identified an issue and requested the hospital for an urgent CT scan. During the 2 weeks wait, dad was rushed to A&E for prolonged severe shortness of breath and the inability to speak… A&E discharged him after a minor check and bloods tests, stating his stats were fine, deeming his condition was not of an urgent nature? I remember mum and I begged them to keep him in.  4 days later on the 6th July 2017 - the CT scan diagnosed him with Stage IV Lung Cancer, stating he had an extremely poor prognosis. The scan showed a sizeable tumour in the bottom right lobe of his lung and the cancer had spread throughout the upper bronchioles of his lung and lymph nodes in his chest. A biopsy followed and a further 2 weeks later – my dad now wheelchair bound - was confirmed to have a very rare form of lung cancer… papa was ALK+. (a non-smokers lung cancer as a result of a gene mutation).  I remember it all so vividly, we were utterly devastated. The consultant told us dad wouldn’t be able to tolerate chemo as he was to unwell, and unlikely to survive. He was prescribed a targeted therapy a TKI (Tyrosine Kinase Inhibitor) called Crizotinib, this is to inhibit the ALK mutation. He started this on the 20th July 2017. Upon digesting the news, reading and researching more and more about his diagnosis and possible prognosis, we discovered that the brain is the most common place for the cancer to metastasize. With this knowledge, we requested the hospital perform a baseline brain MRI, our request for this was refused by the NHS. Undeterred and with the urgent need to know, we paid for a private scan. Our concerns and worst fears were confirmed, several weeks later the MRI revealed 3 brain metastases. A private second opinion was sought in October 2017 from a top ALK specialist in London, which was nothing other than costly and unhelpful. Despite this, papa continued on this first line of treatment and whilst suffering unpleasant side effects, he managed incredibly well and began living life again... this was until progression of the Cancer in his lung in May 2018. His consultant prescribed a second line treatment, a new TKI called Ceritinib. Whilst these targeted drugs are a great advancement in medicine, they only provide a limited time response (different for everyone) at suppressing the gene responsible for his Cancer.  Due to these drugs being relatively new, these treatments have limited data showing their efficacy. This poses a huge problem in what drugs can be accessed via the NHS. In April 2019 while on Ceritinib, new brain lesions were found. Dad was told, the only option the NHS was able to provide, was to change his drug - but with limited drug options left and no guarantee they would work, we began to research what other options would be available for him. Further research brought the option of SRS - Stereotactic Radio Therapy - a successful treatment and management of brain metastases. Whilst available and a proven successful treatment option, the request for this was not met with support by the lead consultant of the SRS team  – in-fact she strongly opposed it – stating it was her own opinion and not based on medical evidence? After presenting my dad’s case to management they overturned the decision and SRS (Stereotactic Radio Therapy) was carried out in May 2019. It was a success! SRS is a great tool for the management of brain metastases and can be repeated after a 3-month period upon certain criteria being met. There was rather a lot of confusion over the interpretation of dads subsequent MRI scans after his SRS, stating new brain metastases were discovered in Oct/Nov 2019 and that he had “Parkinson’s disease?” An urgent appointment with the consultant and head of the SRS team to discuss, concluded that the Parkinson’s diagnosis was claimed to be a “typo” and “mistake” Being under a huge amount of stress and the uncertainty of his MRI report, mistakes added to the stress. We eventually established that dad had a further 3 very small brain metastases and because the previous SRS had shown to be very successful (with all metastases either gone or responding) we requested further SRS treatment. This again was flatly refused by the same consultant who performed the previous treatment. The decision was overturned but after a frantic search thankfully we found an exceptional specialist centre in Sheffield, where the treatment was performed in December 2019 and again in June 2020, both with successful outcomes. Dad was feeling really good and during this time, managed the side effects of his treatment really well and he got back to living.
 
 
Since Dad’s initial diagnosis we’d asked the NHS for an operation to remove the tumour which was in the right lower lobe of his lung – but was always refused stating “It’s not normal procedure to operate on Stage IV Cancer patients”, due to their equation of ‘Cost x Quality of life x Life Expectancy’… But he’s my Dad, why should a faceless system get to decide what price my papa’s life is worth?  After his SRS procedure in June 2020 his lung and brain metastases remained stable, we sourced a consultant to consider our preferred option of life saving surgery and the requested was readdressed. The surgery option is a potentially life saving procedure. However due to red tape & being in the middle of a pandemic resulting in the delay of the assessment of his scans, this small window, for his life saving operation, was revoked…resulting in progression of his Cancer meaning he now doesn’t meet the specific pathway or criteria. We are utterly devastated. 6-8 months back and forth, all of this time-wasted. Therefore, leaving us with the option... to self fund a TKI drug change, and private surgery. Dad’s TKI drug costs £5032 for a 28-day supply. This drug alone, totals over £65,000 per year. The cost of his operation is £50,000 and can be performed in the UK.  We are also exploring the possibility of a new Immunotherapy,  intra-tumoral and other revolutionary treatment in the USA costing approx. £200,000.
 
Why do bad things happen to good people? Especially superheroes? My papa has the biggest heart, of course I’m bias, but I’ve never met anyone who doesn’t think the world of him, and that the world is a much better place for him being in it.
The misdiagnosis of dad’s rare lung Cancer has devastated my family, so please help me reach my target of £300,000 to make my superhero invincible once again.
 
I am acutely aware that the pandemic is such a difficult time for all Cancer patients. Due to covid, the NHS has un-prioritised and side-lined Cancer patients, diagnostic scans and treatments are being delayed with disastrous consequences for them and families - such as ours – months and months of waiting for scans, treatments and procedures literally means the difference between life and death… and this precious time is being wasted .... With that said, any money that surpasses our target will go towards other cancer patients who are in desperate need of diagnostic scans, treatments and operations that need to be urgently resumed. With the aim to pass on the same gift, I'm asking you all to give me…the gift of more time.
  • Abbie McArdle 
    • £10 
    • 4 mos
  • Anonymous 
    • £10 
    • 10 mos
  • Christine Smith 
    • £24 
    • 12 mos
  • Will H 
    • £30 
    • 14 mos
  • Sam McDine 
    • £25 
    • 14 mos
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Organizer

Macy Florence Youngman 
Organizer
Newcastle upon Tyne, UK