Arden Tuerlinckx

Arden's fundraiser for Bone Cancer Research Trust

Fundraising for Bone Cancer Research Trust
£4,590
raised of £4,000 target
by 170 supporters
Donations cannot currently be made to this page
Arden's Cape Wrath Trail Run, 29 May 2023
Frodi's Phoenix Fund is a Special Fund of the Bone Cancer Research Trust raising vital funds for life-saving research.

Story

In June this year I am planning to run the Cape Wrath trail in memory of my amazing little brother Frodi, who I lost on the 31st October 2022 to bone cancer, after an 18 month struggle. He was 9 years old. I’m raising money for the BCRT, a charity dedicated to tackling bone cancer.

Seeing Frodi struggle through first his diagnosis, and then the brutal treatments involving lots of chemotherapy, a rotationplasty amputation and several collapsed lungs, and then finally losing him in October, have been the hardest and most painful months of my life. We have always had an extremely strong bond and he was my best friend as well as brother (we lost our dad when he was a baby). He was an uncommonly kind boy, up until the end still pulling funny faces and making us laugh.

Running has been important in helping me cope with seeing my cheerful, happy-go-lucky little brother struggle with chemo, when I was separated from him and our mum for 8 months during his treatment in Glasgow, and then after he passed away in October, and I’m sure this journey will help me too.

Running and bone cancer have a history, countless people have run various distances for fundraising reasons: people who are dealing with bone cancer, have overcome bone cancer, and their families and friends.

Perhaps the most famous of these people was Terry Fox, who lost his leg aged 18 to the same cancer as Frodi had. Instead of giving up his sports he decided to run a marathon a day across Canada on a prosthetic limb in 1980. After running for 143 days, covering 5,373km, Terry was stopped by his lungs, which then had tumors growing too, and passed away the following year. There has been shockingly little progress made in treatment methods since Terry ran, even though there is a diagnosis of primary bone cancer made somewhere in the world every 10 minutes.

I am doing this run to raise vital funds needed to help improve the brutal and often ineffective treatments. Please give what you can, I can tell you it will make a difference no matter how big or small. You can follow me on my facebook page (https://www.facebook.com/profile.php?id=100090205426392), where I’ll be posting regular updates, both of my training and the run itself. So stick with me and follow along on my adventure.

If anyone would like to run any section of the trail of any length with me please get in touch and we’ll see what we can arrange.

“I’ve said to people before that I’m going to do my very best to make it, I’m not going to give up. But I might not make it… if I don’t, the Marathon of Hope better continue.” - Terry Fox (www.terryfox.org)

Read more about Frodi: https://specialfunds.bcrt.org.uk/frodis-phoenix-fund/

WHY WE NEED BONE CANCER RESEARCH (by Frodi and Arden’s mum)

Every year around 550 people are diagnosed with primary bone cancer in the UK (52,000 per year worldwide), there has been hardly any improvement in treatments and survival rates in 30 years. The treatments (many types of old chemotherapy drugs at high doses) are incredibly tough and often have lasting side effects on the heart, kidneys, hearing, fertility, mobility and can cause secondary cancers later in life. Progress in treatment is difficult and without money being invested in specific research, impossible.

There is no choice but to try these chemotherapy drugs as without them survival chances are around 20%. With them, the 5 year survival rate is 50-60%, which is very sad as being forced to accept this chemotherapy to have a decent chance to survive is awful in itself, but to go through chemotherapy with its side effects and then get the news that the cancer has not responded to treatment is beyond awful.

Bone cancer starts in a bone and can spread to almost any part of the body: the lungs are most common and the usual cause of death, but it can also spread to other bones, lymph nodes, brain,...

Bone cancer can occur at any age but often happens in children as the bones are growing fast - making lots of new cells. It is the oldest known cancer, dinosaur and turtle bones with bone cancer have been found, some hundreds of millions years old.

The major cancer charities put very little money into bone cancer research as it is considered a ‘rare cancer’ (data from ‘20-’21 shows only 0.027% of cancer research money from all large UK cancer charities went to bone cancer research in that period), that’s why donations to specific charities like the BCRT are very important.

Having been through bone cancer treatment with Frodi, we stepped into the world of paediatric cancer and we ended up losing him. No family should have to go through this, not when we live in a world where science is able to push progress and develop more effective and kinder treatments.

Frodi’s cancer treatment:

-he had a hickman line inserted (which meant he was unable to go into water -no baths or swimming- from the start of treatment until he died)

-he had a rotationplasty amputation

-he received the following 5 chemotherapy drugs: doxorubicin, cisplatin, methotrexate, ifosfamide & etoposide - none of these stopped the cancer growth

-he tried 2 other cancer drugs called Mepact (to prevent lung tumours but this did not work for him) and Cabozantinib (to halt the tumour growth for a few months)

-he spent 8 months away from home to receive chemotherapy as the treatment hospital was too far away to allow regular travel.

-he had collapsed lungs several times, sometimes needing a chest drain or oxygen therapy. In the last months the decision was made not to insert another chest drain as the operations would cause him more harm and stress than good, he just lived with partially collapsed lungs.

-he had numerous x-rays and CT-scans, blood tests, blood transfusion, echo’s and other tests.

-he died of the cancer growing in his lungs.

About the campaign

Frodi's Phoenix Fund is a Special Fund of the Bone Cancer Research Trust raising vital funds for life-saving research.

About the charity

Bone Cancer Research Trust

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RCN 1159590
The Bone Cancer Research Trust is the leading charity dedicated to fighting primary bone cancer. Our mission is to save lives and improve outcomes for people affected by primary bone cancer through research, information, awareness and support.

Donation summary

Total raised
£4,589.73
+ £632.50 Gift Aid
Online donations
£4,589.73
Offline donations
£0.00

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