Help give Thomas more time

This may come as a bit of a shock to some of our friends and relatives near and far but we’ve been trying to live a normal life for a long as we can. But now is the time we need some help.

In 2021 on the day our daughter was born Thomas was diagnosed with stage 3 bowel cancer - a few months after experiencing various symptoms.

If it wasn’t for Thomas knowing his own body and having taken quick action to speak to a GP about the blood in his stool and an overall change in bowel habit he probably wouldn’t be here today.

His GP referred him for a colonoscopy which detected a polyp. Thomas quickly had a right hemicolectomy to remove a large part of his large bowel and a post op biopsy confirmed this as cancer. Thomas then endured CAPOX chemotherapy for 4 months.

Given what we know now Thomas sailed through this and we all thought he’d had a close shave.

A scan a few months later showed no signs of the disease which was truly a blessing and we were unbelievably grateful to think life could go back to some form of normal.

Unfortunately 4 months later Thomas had a change in bowel habit again and blood in his stool. Our world changed again and the panic and worry intensified.

A second colonoscopy showed a different cancer towards his rectom and to make matters worse, a CT scan showed lesions in his liver.

So by December 2022 we found ourselves facing stage 4 bowel cancer.

In January 2023 Thomas had another operation to remove the whole of his large bowel. During the surgery the consultant spotted some tumours in Thomas’ peritoneum and on his pelvis.

Whilst a few were removed some were in challenging places and so the decision was made to leave them there with the intention the chemo would reduce them.

Unbelievably this second cancer is totally unrelated to the first and also has a rare mutation making it aggressive and hard to treat. We’ve not had much luck!

Thomas now lives with an ileostomy bag which we call ‘Barry’. Our 2 children have been a god send and normalised ‘Barry the Bag’ immediately. We owe so much to them.

Thomas started chemotherapy again in February for life and we are at the palliative stage. Things were going well on FOLFIRI - the first line chemo but this sadly stopped working over the summer and Thomas moved onto FOLFOX - the second line treatment as blood tests and scans showed quite a bit of growth in his liver.

Thomas has suffered tremendously with varying degrees of side effects but all worth it in his eyes if the chemo does it’s job and annihilates this horrific disease!

It’s now January 2024 and once again scans have shown that the cancer has spread in his liver and fluid is building up in his groin resulting in quite a bit of pain. Thomas is now sadly on LONSURF - the third line treatment. There is no fourth line.

Up till now we have been lucky to some degree but we know what lies ahead and can only wish for time.

Avastin is a drug which works effectively with LONSURF and studies show that life expectancy is far longer than just taking LONSURF alone.

However this is only available privately and so we are desperately trying to raise money for this drug so that our children Hudson and Ottilie have longer with their Dad.

It’s been a long hard road and asking for help doesn’t come naturally to us but we find ourselves in a desperate hour of need.

We’ve been quoted that the drug costs £6500 per month.

We are told that this amount covers the chemotherapy itself, costs associated with all the nursing care Thomas will need and any potential unexpected costs.

We don’t want lavish holidays, days out or amazing experiences we just want to spend time with Thomas for as long as possible doing normal things like playing football in the garden with his son or tea parties at the table with his little girl. This is what life is, being with your children and holding them tight.

For us it’s also about raising awareness and it seems that this devastating disease which normally affects the over 50s is becoming more and more common in people in their 30s. Please talk about your bowel habits and keep an eye on anything out of the ordinary - and don’t leave it too late to get checked no matter how small you think a symptom might be.

We would love you to share this story to raise awareness and if you can spare any amount to help us fund this drug it would mean the world to our family who are all really struggling to come to terms with what lies ahead and what the future may look like.

For anyone who knows Thomas, his positivity and upbeat nature hasn’t faltered. He remains thankful for so many things and constantly reminds himself that “it could always be worse”. He is the biggest inspiration to our children and I couldn’t ask to do life with anyone more incredible.

Thank you for reading our story.

Lauren, Thomas, Hudson & Ottilie