Meet Our Elsie
A New School and A Fresh Start
Every child has the right to a safe, secure and nurturing learning environment. This is even more important for our children diagnosed with brain tumours, who are faced with major motor disabilities from the point of diagnosis. This reflects in their speed and ability to learn, process information, recall information and speech and communication difficulties. Elsie's mum, was unhappy with the learning standards, environment on offer and gaps in inclusion at her former mainstream school and had to fight a tough battle for Elsie to successfully transition to a special school. This is certainly the best outcome for Elsie. The question remains, what about the other children with brain tumours/neurological cancers who are fighting to be heard...?
"When your child is diagnosed with cancer you feel so alone. You feel like no one understands and they don’t until they have lived it themselves. Having the charity takes some of that loneliness away as you know you’re not alone, you have support and love along the way, it really makes so much difference to day to day life."
Chantal - Elsie's Mum
Life saving interventions
Around Christmas , December 2023, Elsie's appetite started to wane. She just could not get anything down her and lost the joy of tasting her favourite foods. Her eating reduced so much that she had lost a significant amount of her body weight by Spring 2024.
In June 2024 she went in for another scan after which a decision was reached for her to undergo a PEG operation in July 2024. Thankfully, Elsie came through the surgery very well bar the odd odd temperature and symptomatic cough.
Last summer, Elsie was well enough to go on a few exciting short breaks with mum and grandma. What a lovely opportunity to make more fond memories and hold on to hope. Keep going, we think you are all so amazing!
"I’m angry, I’m angry I can’t have the family I dreamed of. We wanted more children but how can we when we have a child with so many needs. Elsie should have a sibling and my heart hurts that I cannot give her that now. A cancer diagnosis affects every aspect of your life it’s not only ripped Elsie of her childhood but my life being a mum. I miss the days I saw Elsie run and climb trees. Something I took for granted."
Chantal - Elsie's Mum
Changes we cannot control
It's just before Christmas (December 2023) and with the end of year festivities at their peak, little Elsie received the best news she could ever hope! Her latest scan revealed the tumour what looks like an inactive and dormant tumour! Such an unspeakable relief. This scanxiety, stress, worry, fear, panic, etc does not get easier as time goes on. The fear is that with every new scan, there is a possibility of the worst news yet.
At this time, Elsie's current favourite song is Feliz Navidad and she sways and dances with all the gusto she can summon up! Unfortunately, her health has declined a little. Her mobility, her speech is more slurred and she is a lot quieter. Sleep is one of her major struggles. She will wake up between 2.30 and 3.30 and not go back to sleep. She has lost her appetite and her oncologist suspects she has Hypothalamic Syndrome, which is basically damage to the surrounding nerves where her tumour is. Sadly, over time the tumour has slowly damaged these nerves which results in Elsie’s slower reaction times and interactions. This part of the brain effects sleep, appetite, behaviour, hormones and we have seen recently a massive change is all these things.
Elsie and her mum are back in the new year for more testing. Let's hold them up in our prayers, for better treatment solutions.
"Elsie shouldn't feel like an outsider because she is living with a brain tumour and has complex care needs.
Special Education Needs and Disabilities (SEND) education for children with brain tumours should be better funded, resourced and accessible, to meet their wellbeing needs." (DLF)
Our Little Lady Elsie
"How can your life change in a second. One minute I had a 3 year old healthy daughter, the next I have a child with an inoperable brain tumor. We have gone from Elsie being able to walk on her own to having a walking chair at school and being carried at home. I’m struggling to get Elsie up and down the stairs, in the car, the bath. Our lives have changed dramatically due to her tumour and how it’s affecting her mobility."
"The biggest challenge recently has been school. Elsie is clearly an outsider, you can see that. There so much I want to say it’s so hard to write down x"
(Elsie's Mum, March 2023).
Elsie & her mum
Elsie was diagnosed with a brain tumour in October 2019 and in that same moment, everything changed!
Life has never been the same but that's why Elsie's such an awesome little girl. No smile is more beautiful than our Elsie's golden smile!
"The charity has not only been a great support to myself but also my daughter Elsie. The well-being of my daughter is the most important thing to me and having contact with other families with children with brain tumours has really helped that. They have also contributed to her schooling, helping me with her EHCP plan also finding a new SEN school for Elsie is September. Having the help from the charity makes me feel like I can handle the situations thrown at me because Of Elsie’s diagnosis with confidence and that makes me a better mum to Elsie. I am Elsie's voice and it’s my job to fight for her rights and needs and Angela is always there right behind me."
Chantal - Elsie's Mum
Our beautiful smiling Elsie
Give Elsie more reasons to keep smiling because #familywellbeingmatters after a child has been diagnosed with a brain tumour.
With your help we can continue offering holistic wellbeing support including psychological, spiritual & practical support to our Children & Young People and their families, just like Elsie.
This affects the whole family and grandparents too...
Meet Lita, Elsie's beautiful grandma and Chantal's mum. She is a loving grandma who loves to spoil Elsie and spend every available minute with her amazing grand daughter :)
Lita has taken both Chantal and Elsie on. They live with her now in Hillingdon and life is very busy with hospital trips, multiple reviews, scans, clinics, therapies, evolving personal care routines, school run, GP visits, various community meetings, instant messages and many many telephone conversations to get the best care and support for Elsie.
Although mobility is very difficult for our amazing Elsie now, her smile is the light that fuels Lita and Chantal's hearts everyday. The changes in Elsie's mobiilty and speech and language etc is extremely upsetting for Lita but she is there to support with Elsie's needs when she is able to.
Lita not only has to watch her daughter suffer but her granddaughter too. Love is a powerful force that accomplishes impossible things!! Chantal and Elsie couldn’t get through this journey without Lita's love and support.
"Where do I even begin. The Daniella Logun foundation means so many different things to me. Since my daughter was diagnosed with a brain tumour 4 years ago they have offered nothing but kindness and support. I know I can call or text Angela at anytime with any concerns or questions, big or small, she welcomes me with open arms every time. Knowing you have a shoulder to cry on and an organisation who is there for you consistently means so much to me. They are not only that but the knowledge the charity has within the brain tumour community is fantastic. They help with anything from counselling to our children’s schooling, the list goes on. Angela and Terry provide a place you feel safe and loved and I honestly don’t think I would be where I am today without them. I’m privileged I can now call them friends and their work within the brain tumour community definitely doesn’t go unnoticed. I love you guys dearly."
Chantal - Elsie's Mum
Living with a brain tumour diagnosis is life changing. For our children, processing this information, coping with the reality, learning, socialising, mobility etc. For their families, accepting the changes a child's diagnosis brings can take a very long time. The DLF is here to support children and their families living in Hillingdon and the surrounding areas. If friendship is all that's needed, we are happy to do just that. If more is required, we want to be there to support reach and reach more families who request additional support, we are here to offer emotional, spiritual and practical help that fits around you.