'Love from Lucy'

An awe inspiring story a young girls battle to live, and the work that thankfully continues on in her memory.

I have been privileged to be part of Lucy's journey in supporting the fundraising efforts organised by her mum, family, friends and teams of medical personnel. Please see link to Lucy's page where you too can get involved and help to make a difference for others too.

Love from Lucy is a charity based in Hampshire for solid organ transplant recipients up to the age of 21 years old in UK hospitals who later develop Post Transplant Lymphoproliferative Disorder (PTLD).

Lucy Pearson is the driving force behind this charity. She was diagnosed with an aggressive form of PTLD on New Years Eve 2020; unfortunately this was a battle too big for her and she sadly passed away on the 28th March 2021, aged just 21.

During the last two weeks of Lucy's life she spent time discussing the charity she wanted her family and friends to set up, in her name. The writing in the charity logo is Lucy's own handwriting.

Undergoing cancer treatment is a difficult and isolating time for young cancer patients and their families, with their ability to cope often seriously affected by the financial pressures of a diagnosis. Love from Lucy will help support young adults and parents of younger children to acquire material necessities required in the immediate and not provided by the statutory hospitals eg incontinence aids, personal bedding, washing powder whilst living on the ward and food parcels - anything to make their stay in hospital more bearable.

Lucy's Personal Journey

Lucy was born in December 1999 and was diagnosed with very complex health issues including many heart conditions. She underwent a big open heart surgery at 2 days old and had a pacemaker fitted at 5 months old.

The pacemaker was changed when she was 4; she was always supposed to have a third heart surgery but unfortunately she was no longer a candidate. After some fighting her Mum got her to Great Ormond Street Hospital for transplant assessment; Lucy was found to be suitable and was placed on the transplant list.

In August 2006 she received the heart transplant she so desperately needed. She was given a second chance at life and she took the ‘bull by the horns’ so to speak and made the most of every day. Life was good; yes she did have the occasional blip, but nothing serious.

In March 2020 Lucy and her family went into lockdown, shielding to keep Lucy safe from coronavirus. Lucy, Alice and Ben kept attending remote lessons for their college courses.

In December 2020 Lucy had a bit of shoulder pain, but nothing which concerned anyone. On 23 December Lucy was sat at the dinner table when the pain in her shoulder became unbearable and she went as white as a sheet. Mum thought that she was having a heart attack so an ambulance was called.

Lucy was taken to Southampton General Hospital where she was diagnosed with pneumonia and was admitted for treatment. Behind the scenes Haematology became involved because her bloods didn’t look right. They had found some enlarged lymph nodes in her chest at the top of her left lung, so a biopsy was performed. Whilst the results were awaited Lucy completely lost the use of her legs, she had no feeling from her rib cage down. It was decided to perform an MRI scan on New Years Eve.

Just before 7pm that day, mum received a devastating phone call. Lucy had a very aggressive cancer which had grown in her chest in the space of a week, she had a lesion in her spine which had compromised her spinal cord, leaving her paraplegic. She needed to start treatment immediately, early on New Years Day.

Mum eventually got the full diagnosis of Plasmablastic Lymphoma which is a more severe sub type of Diffuse Large B-Cell Lymphoma, a form of Non-Hodgkin’s Lymphoma. It was caused by being on immuno-suppressive medication to make her body accept her new heart.

Lucy had a first round of chemotherapy which seemed to be working. However, on day 3 of 4 of her second round of chemo they found that the treatment was not working and the cancer was taking over again.

Lucy’s only option then was monoclonal antibody treatment which had never been used for this type of cancer. Things were going well and there was a significant reduction in the size of the tumours, so Lucy went ahead with a second round of the treatment. Unfortunately during the second round of treatment it was found that again the cancer was too aggressive and it had stopped working.

She was also diagnosed with B-Cell CNS Lymphoma; the cancer had spread into the cerebral spinal fluid. Lucy tried intrathecal chemo via lumbar punctures and an oral drug which was not licensed for the type of cancer she had, in the hope that it would buy her some time.

However, on 11 March 2021, the treatment regime became too much for Lucy to bear and she made the tremendously courageous decision to stop treatment. Lucy was moved to Naomi House & Jacksplace Hospice, where she spent two weeks with her close family around her, making memories for them and plans for her ‘special service’ and charity.

Lucy passed away on Sunday 28 March 2021, aged just 21. The cancer had taken away her independence and her beautiful smile but left everyone who knew her with wonderful memories of a truly inspirational, brave and beautiful young lady who always put everyone else first.

Support lucy's charity: https://lovefromlucy.org.uk/lucy