Mishka Amara Tafts Cancer & Brain Tumours GoFundMe

Update: 28/09/2023

I'm so sorry I haven't updated you all since October. I truly, truly am. I've been on such a journey, a rollercoaster, both good and bad these past months, it's been overwhelming. Sometimes it has felt difficult writing an update, because always on the near horizon we had the next set of news, treatments or scans. It has been difficult to keep pace, let alone to sit down and write it all down and share.

There have been times these past months, where I thought I wouldn't make it and felt close to death. I didn't know if my symptoms were a sign I was improving or declining. It's hard not knowing what's happening in your own body. However now I finally feel like my health has started to settle and this is the first time where I feel like I'm able to share with you all where I've been, where I'm at, and where I'm going with my fight against cancer. Firstly to start with the elephant in the room in spite of how morbid it is to talk about, my oncologist's own prognosis at best with treatment I had 12 months. That was 16 months ago. Things were going quite well through May with tumours having halved by size. Things have taken a turn with my latest scan however.

I'll start with results of my last 4 scans:

In November 2022 my MRI results came back showing my brain tumours had shrunk by 38% volume.

In February 2023 we learned from my oncologist that according to my latest MRI my largest tumour shrank (28% volume) but the consequences of that was that my brain tumour detached from a blood vessel it had made and left me with a bleed on my brain.

In May 2023 my MRI showed that all but one tumour had shrunk by roughly half their size by volume!!! The last tumour looked like it had increased marginally in size but my oncologist said that could just be due to swelling. I was also told that my brain bleed had vanished. So more good news!

However my latest scan at the end of July 2023 showed 1 tumour is growing rapidly so is immunotherapy resistant.

2022:

October: I had my last round of chemo to prep me for Immunotherapy. I also lost my hair to the full brain radiotherapy and had 2 seizures. The radiation gave me permanent damage to my cognitive thinking and hearing and my second PICC line failed. PICC lines and PORTs are a type of semi-permanent catheter used to take bloods and insert treatments through.

November: I had my first Immunotherapy treatment, the next day I had my third PICC line put in. Side effects of the treatment started with fatigue but then I started having nausea, a strong cough, fevers, vomiting, chills, so I was instructed to go into A&E which unfortunately is where I spent Thanksgiving. My 3rd PICC line caused DVT so was removed.

December: On December 5th I came home. They sent me home with blood thinner injections, as well as a medication syringe injector to give me anti-sickness medication.

The doctor told us that my extreme nausea and vomiting could have been caused by cancer cell die off. Basically my body was expelling all the cancer cells that my protocol fuelled immunotherapy had killed and when a lot are killed at once it can make you very ill. By Christmas I was able to move to anti-sickness tablets and we all had a lovely Christmas together.

2023:

January: I had 2 more rounds of Immunotherapy with less severe side effects. I had a PORT inserted under my skin to replace the PICC line. Prior to this on the 6th I was going into the hospital for a test when I got out of the car I had a seizure and blacked out. I have no memory of falling to the ground and hitting my head. I went in for my test, then they sent me to A&E. I spent 3 days in the hospital. My head scan showed no damage from hitting my head and I was released.

On the 31st Jack's Grandad sadly passed away from a heart attack.

February: I had one round of immunotherapy, an MRI head scan and 2 appointments with my oncologist.

March: I had two immunotherapy sessions, the side effects after the first one were kind of bad then cleared up.

April: A few days after my immunotherapy the side effects set in but since the month before I'd noticed increasing soreness and muscle aches that kept building up. Then I got distracted as Chloe then Nina both came down with chickenpox.

May: On the 6th it became clear that I had chickenpox for the 3rd time. Cancer just ripped through my previous immunity and landed me in A&E. Between spots and rashes connecting I became one big spot. I was then put on anti-viral IV bags, then shipped off to the Infectious Disease Ward. My body soreness went away as the antivirals set in.

Jack has spent hours Every Single Day researching my protocol as well as discussing it with leading experts. Jack's anti-cancer protocol is strong, however I am not. I have bipolar disorder I and fell into a deep depressive episode in May because bipolar disorder doesn't care about good news. This resulted in self sabotage of my protocol, so I wasn't strictly adhering to it and to my greatest shame this might have opened the door for the now resistant tumour to grow.

My depressive episode at its worst left me suicidal and Jack was put in charge of my prescriptions. It's hard to explain the feeling of trying desperately to fight cancer off while also suffering suicidal ideation. My mental health is now being overseen by my GP, a counsellor and I've been referred to a psychiatric nurse and I'm starting to feel better. I am back to strictly following the protocol and am hopeful it with along with my new prescriptions will shrink the problem tumour.

June:

I had one immunotherapy session and mid June I went to A&E by ambulance after having a bad seizure that I didn't immediately recover from. They did a CT scan which showed possible growth in one tumour. However they were comparing a CT against an MRI so we tried to just push that aside and wait for my MRI in July. My PORT a cath developed skin necrosis around it and had to be removed.

July: I developed infections back to back in the incision line where the PORT was removed, the incision fully opened and the doctor said it's healing from the bottom up and would take a couple of months. I also had one immunotherapy session and on the 31st I had an MRI head scan.

August: I had one immunotherapy session on the 1st and one on the 22nd, on the 14th I met with my oncologist who confirmed 1 tumour had tripled in size. He said he'd ask the targeted radiotherapy team if they could target that one then continue immunotherapy. I also had 2 seizures that left me with paralysis of my left arm for several hours. Todd's Paralysis is a type of temporary paralysis that's triggered by a seizure.

The radiotherapy team had their meeting about me and on the 24th a lung specialist nurse told me the radiotherapy team had declined targeting the tumour because it was "too cystic in nature". Basically my tumour had developed cysts inside and radiotherapy would likely just deflect off of them or if it broke through it could release what's inside of the cysts into my brain all at once. So no radiotherapy.

September:

My oncologist referred me to the team in Coventry hospital that surgically remove brain tumours but the first surgeon available wasn't morally compatible so I'm on a waitlist now.To our knowledge though the last avenue if I don't have surgery is a targeted tablet used to treat KRAS g12c, which is an oncogenic driver mutation they detected in my blood last year. I'll have an MRI on the 29th.

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Original Post:

Hi, my name is Mishka Amara Taft, but I tend to just go by Amara, on the 14th of April this year my husband, Jack took me into A&E here in the West Midlands, UK. I'd woken with a debilitating migraine and found I couldn't use my left hand when I sat down at my keyboard for work. The NHS hospital performed a head CT scan and unfortunately they found 4 masses in my brain, 2 smaller grouped together in the right frontal and parietal lobe along with 1 at over 2 cm and one large mass at roughly 4 cm in the right parietal lobe, which is managing to press on both sides of my brain.

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After an MRI and a body CT scan it was initially suspected they were likely to be brain abscesses caused by an infection and the Infectious Disease Team took over leading an extensive investigation. However after a month of investigations, they'd found no signs of infection anywhere in my body.

During that time I also had an EBUS-TBNA (Endobronchial Ultrasound-guided Transbronchial Needle Aspiration) biopsy of swollen lymph nodes in my lungs. Those enlarged lymph nodes were the only abnormality found in my body CT scan.

Ultimately the EBUS results, as an oncologist would tell me found a combination of both small and non-small Lung Cancer cells in my lymph nodes. Giving me a diagnosis of combined small cell lung carcinoma or c-SCLC for short. This type of cancer makes up roughly 4-6% of diagnosed lung cancer.

Having never smoked a day in my life, a Lung Cancer diagnosis came as a huge shock. Six neurosurgeon teams across the UK met and concluded that the brain tumours orginated from the cancer in my lungs and are malignant. This gave me a stage 4 diagnosis with a prognosis at the time of up to 12 months to live with treatment but the only treatment deemed safe was chemotherapy, because it was too dangerous to treat the brain tumours directly due to size and locations.

This was devastating news as it would be to anyone but I'm also only 42 years old and was described by multiple doctors as otherwise being the picture of health. I have a husband and two daughters, Chloe, who just turned 4 and our almost 3 year old Nina. I have everything to live and fight for.

I started chemotherapy later in May but after my second round in June my health further deteriorated while we were visiting Wales. After being taken into Bronglais A&E it was determined that I had sepsis as well as pericarditis. Basically fluid was building up around my heart which would ultimately force it to collapse and stop beating, if left untreated. A procedure to drain the fluid was performed and samples sent off for testing.

On July 5th I was discharged from a larger Welsh hospital in Swansea and came back to England. However only 2 days later I was being admitted into a hospital local to our home. The fluid had come back to surround my heart in larger quantities and I was told after it was drained again that at the point I was brought in my heart was on the verge of collapsing. This began the start of a month long stay in a cardiology ward where they determined that unlike most cases of pericarditis which are viral in nature and usually resolve on their own, mine was bacterial and so rare that most of the doctors had never treated a case of it.

Unfortunately this is what chemotherapy can do to a person, it so thoroughly destroyed my immune system that I became vulnerable to a rare disease. A disease that then rendered me ineligible for further chemotherapy until it was eradicated from my body.

2 months had passed by the time I was able to resume chemotherapy and during that time my cancer became chemo resistant, I developed a fifth brain tumour, and my second largest tumour had grown from 2.5 cm to 4 5 cm, making it now the largest of the five.

After consulting with colleagues, my oncologist determined that the last resort treatment of full brain radiotherapy, is now the only option. In 9 days on the 27th, I will have the first of a minimum of 5 radiotherapy sessions.

The hope is that the tumours will be shrunk enough that I will become eligible for chemotherapy again and possibly immunotherapy after that.

My current prognosis is still 12 months but we're hoping if my tumours respond well to radiotherapy that maybe I could get an additional year. This could be the difference between whether or not Chloe and Nina actually remember me. One of the things that has haunted me the most throughout this is that my daughters won't remember me and how hard that will be on them growing up. I can't imagine growing up and grieving a Mother that I don't even remember.

Prior to me being signed off sick from work I worked 40 hours a week for a bank, but as long as the tumours remain in my brain I'm not fit for work. Jack has spent the last 2 years working from home pursuing his dream of building his own business, which I've happily supported. While the business is only looking up it is still at that point where all profits go back into it to continue its growth and he's unable to draw a salary. The government has now offered Jack some financial assistance, but there's still a large deficit each month with our bills, which continue to pile up.

If Jack closed his business to pursue a traditional job the cost to put our youngest daughter into full-time childcare would be roughly £1,000 per month, making it an almost pointless endeavour. Also while I'm more limited now in my ability to care for our daughters by myself, the idea of not seeing them all day, 5 days a week while still having a terminal prognosis understandably fills me with great sadness.

At the time of the original news I was a month away from my dream of applying for Indefinite Leave to Remain or ILR in the UK on the 5 year spouse visa track, while my husband and our daughters are born and bred UK citizens, I'm American. ILR would have given me the same rights to temporary government assistance as a citizen, but as it stands at the moment, I'm only entitiled to £99.35 per week statutory sick pay for 28 weeks. Next month my current visa runs out and I face the very real possibility of being deported during all of this as we can no longer afford the £2,400 to apply for ILR. When I moved here I was obviously in love with Jack, during my 5 years here I've also fallen in love with the UK, it's my home, it's where I've built my life and had my children and I can't imagine living anywhere else now.

After the assistance Jack is receiving we still owe £1,600 per month in bills, in addition to unexpected bills, we've maxed our credit cards just to scrape by. There are also a large number of alternative supplements that I'm on to improve the effectiveness of traditional treatments which cost about £400 per month. Intravenous vitamin C is something else I'm using to support my treatments but costs about £250 per session but there's strong evidence that it improves the effectiveness of chemotherapy as well as radiotherapy sessions.

While we both find it incredibly difficult to ask this, we would very much appreciate any donations that friends, family, and kind strangers, are willing to donate to us while I continue to fight for my life and my family.

Warmest regards, Amara and Jack

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