Leonie's Anaplastic Large Cell Lymphoma Journey

I am creating this GoFundMe on behalf of my eldest daughter Leonie, who at the age of 21 has been diagnosed with a rare type of Non-Hodgkins Lymphoma - Anaplastic Large Cell Lymphoma 3B and was found at stage 3.

Only 200 people are diagnosed with this blood cancer in the UK a year.

Leonie began Chemotherapy on the 13th of October 2023.

Leonie is the eldest sister of her four siblings, an amazing daughter, granddaughter, niece and my best friend.

She is a third-year English Literature student and SEN tutor in schools throughout South East London. Prior to her diagnosis, she had been unwell for just over a year, and from July 2023 things deteriorated for the worst. This is her story.

'July 2023, I had just gotten back from a girls holiday to the South of France. I felt run down, but in all honesty I always felt run down. I had long suspected I may of had an auto-immune disease, as I always so tired and prone to being under the weather. I remember often saying go to my Mum that I didn't feel like a 21 year old girl who should be in her prime. My friends would go to University, then work a night shift, head out clubbing and do the same the next day! Just running errands locally would take everything out of me, and I was extremely intolerant to alcohol (a Lymphoma symptom), so much so I was nicknamed 'One-Gin-Leonie' for a while...

The first symptom I noticed back in July was a cough. I don't smoke and didn't have covid, so when it persisted and I felt intense pressure on my chest one night I took myself to Urgent Care. Unfortunately this would be a trip of many, and each time I went to the GP, Urgent Care or A&E, I would be met with the same answer: 'Your blood work is all normal, your chest X-Ray is fine, it's just a viral infection.'

By September 2023, I had a whole list of what we now know as 'B Symptoms'. I was sweating throughout the night, had a rash at this point for about a year, had lymph-nodes swollen to the size of golf balls, was so tired I could barely function, and just generally felt extremely unwell. We reached a point where I was so unwell, I couldn't walk. I faced severe back and abdominal pain due to the swelling of my lymph-nodes pressing on nerves within my spinal cord.

By the time my GP finally agreed to refer me for further investigation as my mum pleaded she suspected Lymphoma, days later I was admitted into hospital.

A week in hospital went by, and my PET scan was pointing towards malignancies (cancer). I had known deep down for about a month it was likely to be Non-Hodgkins Lymphoma, as I fit every symptom, and each test that came back proved more and more confirming. But as anyone who has gone through the diagnostic process will know, it can be a LONG one.

The first biopsy from my neck came back inconclusive due to the sample that was taken not being big enough for a confirmed diagnosis. A second biopsy from a large lymph-node in my groin was taken while I was an inpatient, and on the 1st of October, I received my diagnosis of Stage 3B Anaplastic Large Cell Lymphoma.

Due to the aggressive nature of the cancer, it was too late to start fertility treatment and there was no time for egg retrieval, and chemo had to start almost immediately. I have got to go through 6 rounds of BV-CHOP chemotherapy, one down and five left to go.

Since my diagnosis, I have not just lost my hair, but so many elements of my independence.

I want to work, as I loved my job, but of course can't at the moment due to my risk of infection and obviously working in schools isn’t possible for me at the moment.

I can't attend University in person due to my weakened immune system and side effects of the chemo. I have family and friends dotted all over the country that I now can't see as frequently as I'd like. My vision has been impacted, my mobility, my appearance, my mental health and overall physical strength.

I am currently only able to go out for short walks and even then I am so fatigued that I return and sleep for hours.

This GoFundMe will go towards multiple things that not only will help me regain some of what makes me feel like me, but essential expenses like petrol for hospital visits and living costs while I am unable to work as I was self-employed via an agency.

I intend on using some of the funds towards a human hair wig from a wig maker, as it is my graduation from University soon and I’d like to look my best!

I have made this GoFundMe at the request of so many family, friends and colleagues who have asked, as I am so lucky to be surrounded by such amazing people who want to help above and beyond what I would ever expect them to.

Please do not feel obliged to donate, even just sharing my page and my story will help other young people that may find them selves in my position.

It's been difficult for me and my family so far, and undoubtedly there may be tougher times to come, but I'm hopeful there are better days not too far away.

Thank you for taking the time to read my story

Leonie :)'