Help Give Alex a Chance - Rare Cancer Fight

Hi, I'm Katie, Alex's Mum in Law and we are desperately raising funds for Cancer treatment that has been just been withdrawn from the NHS.

Alex has just turned 30 and has been married to our daughter Elle since 2021. They live in Kent, UK with their cat babies Socks and Sage; sadly their dream of children was put on hold when Alex was diagnosed.

It all began in September 2023 when Alex experienced some pain in his shoulder - he believed he had pulled a muscle by overdoing it at the gym. He paid for weekly Physio sessions whilst struggling on at work. Over the coming months, the pain kept him awake at night -he instinctively knew, there was something more sinister going on so he pushed for an MRI but in November 2023 the scan came back clear.

By May 2024, he was in more pain than not; his Mum Claudia contacted the Dr's and insisted that he have another scan. This time they found a large tumour on his shoulder, very close to the spinal cord. He was sent to Kings Hospital London where he underwent surgery to remove the mass. We were told that the surgery was largely successful, removing 90% of the growth, the remaining 10% was too close to the spinal cord and posed too greater a risk to disturb. The tumour biopsy was sent off for testing and 2 weeks later our world came crashing down around us all.

Alex was diagnosed with an extremely rare Rhabdoid tumour, so rare there have only ever been 11 cases in adults, in Europe, ever. This was not an exclusive club anyone would ever want to be in; there was little to no information available, Alex is believed to be the first ever case in the UK.

Kings, Guys and the Royal Marsden joined forces to coordinate resources- sadly their expertise was limited to Paediatrics. This cancer is more commonly seen in infants, with around 8 cases per year globally. For those poor families this, is normally associated to a defective gene and starts in the Liver... Alex's was different; extensive gene testing showed there was no hereditary link, no issues with his liver, he was super fit and healthy- unfairly, this was just the worst case of bad luck.

Claudia and I attended the first Consultation with the kids, we were armed with a million questions, sadly many of which, they could not answer. We were told that in the space of the 4 weeks post surgery, the original tumour had grown back to its pre op size. That said, we were given hope that his ongoing treatment was being offered as curative- the first attempt would be Radiotherapy with an aim to shrink the mass.

They explained that Rhabdoid tumours behave like spiders webs, fine strands that cling to whatever they can grab. Alex's was dangerously close to his spinal cord, attached to muscles and nerves controlling his arm movement. He was signed off work, forced to quit driving and terrified that he his strength and mobility would continue to deteriorate.

A week later, Alex underwent intense Radiotherapy (every day, for 6 weeks) he was so resilient; given the target site, Alex had to wear a mesh mask, which they had to strap to the bed for the duration of each session. The kids were travelling to London everyday but they kept strong and positive.

The Radiotherapy caused burns and inflammation to his throat, he struggled to eat or drink- he was losing weigh rapidly but he kept pushing through.

Shortly after the Radiotherapy ended, he started Chemo. We were terrified that the 9 cycles planned would be too much for his body to handle but Alex was determined to keep going.

He took the Chemo is his stride, the side effects were an improvement on those from the Radiotherapy and slowly, despite the odds he started to build himself back up.

The halfway scan showed mixed results - the original tumour unexpectedly, stabilised given us all hope. Worryingly though very small patches of secondary sites appeared in both his lungs, his lower back and shoulder bone. Chemo continued, Alex had read every self help cancer book possible; he was following strict diets, cutting out sugars & processed foods. We all committed to organic foods, Alex ate a plant heavy diet, walked every day, meditated, invested in the very best Vitamin D supplements... anything to compliment and enhance his treatment.

In December, a week before Christmas Alex had another scan and we were treated to the best news- the secondary tumours in his lung and shoulder bone had gone. Despite the professionals fears, the original tumour remained stable... The Dr's were baffled, they couldn't explain it. From our perspective, we didn't need reasons, we we just grateful that whatever it was, it was working.

In January Elle and Alex started making their future plans a reality; they put in an offer on a new home in Shropshire- a move we had all planned to make to be closer to our other daughter, Lois. Alex wanted to move to this beautiful part of the world so they could enjoy the countryside and aid his route to recovery.

Alex's chemo ended in March 2025, we celebrated his 30th birthday that month with a huge western themed party. The Chemo had taken its toll on him, his body was weak but Alex remained strong and determined to fight. The original cancer continued to remain stable, there were no new growths, the patch in his lower back bone had grown slightly but by some miracle, the lungs were now completely free of cancer. With such positive results, his team decided to give Alex a chance to build his body back up before starting a 2nd round of chemo.

At the end of April they travelled to Shropshire to sign off the house; Alex was poorly, he said he felt strange sensations in his legs, his back was painful- over the course of the weekend away, he became progressively worse. Alex wasn't sure if it was anxiety, we all convinced ourselves, and him, that was probably the issue. However after a horrific drive home, Elle diverted them to Kings Hospital where he was seen in A&E.

They completed scans and bloodwork but sent him home, requesting that he return the following day to share the findings with his team.

We took them to the hospital- we were shocked at his visible and rapid decline in just a few days. We practically carried him down the stairs from their flat; he looked like a ghost- completely transparent in colour, no energy, dizzy and uncoordinated. His team at the Hospital were equally as concerned- sadly his results mirrored our fears.

His haemoglobin levels were rock bottom, the tumours in his lungs had returned and there were new growths in his lower back, effecting his mobility and worryingly, there were 2 small lesions in his brain. Alex was tired and we were terrified this latest news would zap the last of his fight.

Over the coming weeks difficult decisions were made; they pulled out of their dream home, Wills were drawn up, conversations about his declining mobility and future care were had.

Alex spent the best part of 5 weeks in Guys hospital and once again, despite the odds he started to improve. He was given 5 days of continuous radiotherapy to his brain, with the aim to prevent further growth and reduce those already there. He responded really well to treatment and thankfully did not experience any memory loss or speech impairment, that can be a common side effect.

Intense physiotherapy had him walking again, his lower spine also responded positively to radiotherapy - we were back on the up!

His team were pleased with his progress and chemo was resumed - 6 cycles were offered. He had the first during his stay in hospital, the second was slightly mismanaged, delays in medication meant the spaces between doses were too long.

We went on a family staycation, we previously thought we would need to cancel; the following week Alex was able to attend the Black Sabbath concert in Birmingham he and his best friend Ben had been so looking forward to- he was defeating the odds and fighting for life outside of cancer.

Fast forward to this week... just one week after all these recent highs, we were stopped dead in our tracks.

Alex went into Guys for the first part of his 3rd cycle of chemo. The following morning, he woke up and scarily had lost all sensation in his legs. He had total, sudden paralysis from his chest down. He was rushed to our local hospital where a full MRI was carried out. 2 new growths were found in his spine (now 7 in total) causing compression of the nerves, we were told this was responsible for the paralysis. We had been here before, with treatment Alex was determined he could come back from this.

On Friday 11th July we were given the devasting news that his team felt the cancer was now uncontrollable- they made a decision we didn't want to hear and did not support- they were terminating Alex's treatment.

To say that we are heartbroken is an understatement, its every parents worst nightmare. Alex is angry, frustrated and scared; the kids feel cheated out of their future together, all their hopes and dreams left hanging in the balance.

We refuse to give up! Macmillan have encouraged us to seek alternative treatment routes outside of the NHS, his physiotherapists have advised that the paralysis would be reversed if the pressure on his spine was reduced, we have to fight.

A top Neurologist in Birmingham is looking at Alex's case file and scans privately but treatment would need to funded. We have options to seek ground-breaking treatment in Mexico or Germany but Alex will need some intervention immediately to be able to travel - this will need to be self funded too. Our window for action is small, we may only have weeks to initiate treatment.

We need help. If you can afford to give we would be eternally grateful, if you can't, we understand times are tough... so simply sharing Alex's story is hugely appreciated. The more people and experts this reaches, the better chance he has.

Thank you xxx