Help Ryan and his family through a difficult time

Hi my name is Becky and I am fundraising for my friend Kate and her partner Ryan.

They have had a very difficult number of years and it now feels like they need some financial support from family, friends or strangers.

Please read kate's story and help by sharing and donating where you can!

It all started in 2018 when they were told Ryan first had aggressive bcell lymphoma, their youngest of 3 children was only 12 weeks old when he was given the diagnosis then started his chemotherapy a short while later for the first time. For nearly two years Ryan missed out on watching her grow and playing with the other children, it was a horrible time.

Good news came following a sucessful treatment, Ryan was given the 'all-clear' and they were happy to get on with their lives and tried to put it behind them and move on.

However, just 2 years later, as they were starting to recover from the emotional and financial difficulty it caused and making plans for the future. Ryan over a period of a few weeks became seriously poorly...again.

His neck began to quickly swell, drenching sweats and blinding disabling headaches consumed each day.

The lymphoma had returned, more aggressive than ever in the other side of his neck this time.

It grew quickly and began to press on the carotid artery deep in Ryan's neck. His blood pressure and oxygen constantly dropping, and the large tumours were slowing obstructing his throat and the blood flow/oxygen to his brain causing him to regularly fit and pass out.

The children witnessed throughout, and it has been a traumatic time for them too, Kate doing all she could to be strong and shield them as much as she could.

Their eldest even had to call an ambulance crying and shaking trying to hold the phone, the two little ones scared and hiding while Kate was trying to help Ryan to breathe a dislodge the tumour from his arteries with his eyes rolling back into his head. Ambulances were called on numerous occasions.

Because of the aggressive nature and history even though the doctors had diagnosed cancer again, biopsies and scans were all done quickly because treatment couldn't commence without them.

On one occasion Ryan was taken to Tameside hospital by ambulance he was already due have a biopsy there the following day. Ryan was put in an operation recovery ward and mistreated by nurses, while he was (in his words) in the worst pain of his life! The nurses told him there was nothing wrong with him and he's not a doctor so how would he know if he had cancer and refused anything more than paracetamol. That stay was so traumatic for him, so much so Kate had other nurses calling her at 4 am to come and help him.

Kate contacted to the Christie direct and got him transferred over immediately.

Once he was back at the Christie treatment was started quickly before the results came because the cancer was getting so out of control.

Ryan was started on a strong platinum-intensive chemotherapy, which in the words of staff is one of the best and has a high success rate.

He started the treatment and shortly after they were called in for a meeting.

It was not working and they spoke about stopping treatment. Kate already researching and teaching herself everything she could about the disease started to look at other treatment alternatives.

They begged them to give him one more dose and give it time which they did, and it seemed it had worked. Everyone was surprised but happy at the same time as the scans showed a complete response.

Just 2 weeks later it came back with vengeance and had spread, it was growing out of control causing problem after problem.

Ryan was told radiotherapy even as a strong dose couldn't be used as a treatment in itself but could be used only as a bridging measure to slow the growth and hopefully relieve a bit of pressure in his neck.

Doctors suggested another type of chemotherapy to try along side it but it would only have a 14% chance of short-term success, they also mentioned a stem cell transplant but even that would not combat his aggressive cancer.

The doctor explained to them that if nothing works then Ryan had 6 months left to live max.

That day everything was in complete slow motion, and they felt as though they were suffocating...walking around like zombies in shock.

Kate snapped herself out of it and decided no, that's not going to happen and went back to her research. She found a treatment called Car t therapy, but it wasn't cheap. It is a new ground breaking treatment but is rarely used and normally only funded for under 25's.

At their next appointment they declined the 'last chance' chemo and enquired as to how to acquire Car t therapy.

Doctors advised it would indeed be Ryan's best chance for survival but there are so many hoops to jump through and boxes to tick and even then, they may not be awarded the hundreds of thousands of funding from the medical board.

They didn't give up, they remained positive and jumped in headfirst.

Kate worked with the hospital in gathering all evidence quickly and making sure Ryan attended every test or scan to provide to the board. All the while working and caring for their 3 children full time.

All of the Christie doctors were amazing helping them race against time and some put their names to the cause.

The odds of 6 months they thought that they had was drastically decreasing.

The day came and they had the good news that the treatment could go ahead, but that was only the start. It involved extracting the cells from Ryan and sending them by air to America to be genetically modified and then sent back.

This was a long timely process, and they didn't have a lot of time left on their side.

In the words of the doctors Ryan was living on a knife's edge and they weren't sure if he'd make it to the actual treatment date.

The cells aready in transit, radiotherapy was quickly organised as a bridging measure to slow it down.

The Radiotherapy caused Ryan an immense amount of pain leaving him with 2nd/3rd degree burns in his mouth and right down his throat/windpipe making it impossible to eat or drink.

He went through daily torture along with the symptoms he was experiencing from the tumours in his neck.

Ryan lost nearly 5 stone in a few weeks, he became frail and a shadow of his former self.

They had to numb his mouth to force water down and multiple hospital visits for fluids.

Eventually, he could tolerate liquid meals, but he was not able to have a feeding tube due to the brutal Car t therapy he was due to endure, they couldn't risk any infection.

Just as his mouth was recovering his cells were due back from overseas.

Ryans lymphoma had spread right around his neck and so it was agreed a short spell of radiotherapy was needed again.

Following this Ryan went to the room he would unknowingly spend nearly 3 months in to have his treatment.

On the day the cells were returned everyone was surprised Ryan had made it this far, he had nothing to lose at this point and the relief they all felt when the cells were put back into his body was immense.

They were prepared for the 28-day hospital stay as advised and felt a little more positive that this new breakthrough therapy could make him better.

A week later Kate was worried as she had not had any contact with him all day, panicking she called and called the hospital.

5 hours later she was called and told to get to the hospital as he was taken to the critical care unit.

Kate arrived and Ryan was plugged into every machine imaginable with wires and tubes all over the place.

She was greeted by a doctor who told her to prepare for the worst and his body may end up relying on machines to breathe for him.

Ryan was unconscious, pale, skinny and fragile looking, Kate will never forget that image.

As the days went by, he started to come around, but he had lost the use of his body, he couldn't speak, and he had lost his memory...he couldnt even remember his own children!

Kate spent all day, everyday there showing him photos and trying to help him with his motor skills, being his hands and voice.

Because of the amount of treatments and medication Ryan had developed severe neurological toxicity and had multiple brain tests and body scans.

While unconscious he developed blood clots in his lungs and went on to have sepsis and pneumonia. He was dealing either a whole host of symptoms and pain and it all just sucked the life out of him.

Slowly he could move and eventually was able to use his body again, words started making a bit more sense. His body still enduring the brutal treatment throughout.

However, they were told some issues had developed as a result, this included a brain injury but they needed to ensure he survived before they could worry about that.

While he was going through this, Kate and the children were at home. They had no kitchen because Ryan had tried to complete it before he deteriorated so suddenly at the beginning.

Subsequently the floor had collapsed and it was a big muddy hole, there was no water or means to use the kitchen, they lived like that for 3 months until a family member helped them get it useable.

The boiler broke straight after and Kate had to plunge them into more debt for a new one. The car steering and wheel blew up and sent the car crashing into a parked car and Kate was starting to feel defeated herself.

She never stopped trying to finish the house, looking after the kids, working and going to the hospital every day.

Ryan was moved back up to his car t therapy room and it went from one thing to another, he had a torrid time, with numerous lumbar punctures, being so poorly, endless infections and pain. He still couldn't eat. What was supposed to be a 28-day stay ended up being nearly 3 months.

But the positive was that although they didn't know if the treatment had worked. He was still here and that's all that mattered in that moment.

It became obvious that something wasn't right with his face. Half of it dropped almost like a stroke, his eye blurred and pupil dilated on that one side, the brain injury was affecting his vocabulary, short-term memory and other day-to-day things, the blood clots were causing pain, and his brain injury had affected his central nervous system.

He cannot regulate his body temperature; he has circulation issues, and one side of his body has severe nerve pain, especially in the top of his right leg where it’s been left completely numb to touch.

When Ryan was sent home every few days he was back in the hospital on drips. This went on for weeks. His Hickman line (tube to heart for medications) kept becoming infected and tearing his skin eventually it had to be removed but with risk as all his arms viens are damaged by the various treatments, so it is hard to get a cannula in for future needs.

Since September he has had around 10 long-stay hospital admissions due to complications from the treatment and secondary illnesses.

They have since been told that the car t treatment seems to be working for the lymphoma but it is unknown for how long and the prognosis. Ryan needs to have several scans before they can officially see if it has been effective and even then, they don't know if it will come back like the first time/second time.

Ryan has just come out of hospital again and after spend nearly 2 weeks suffering with infection and sepsis, and this happens every few weeks due to having no immune system and the car t therapy having such a brutal attack on his body making his white blood count and body struggle to recover which can cause life-threatening problems in Itself.

Ryan is struggling to adapt to life after because he knows it'll never be as it once was.

His brain injury although improved slightly is most likely going to be permanent and everything that comes with it like cognitive and memory issues, central nervous system problems, face dropping, eyesight issues, circulation and body temp regulation problems, blood clots in lungs, muscle wastage, weakness, he's not allowed to drive, he is always poorly, the radiotherapy has damaged his taste and teeth, he’s always at the hospital or having health care professionals out to the house. His kidneys are taking a beating from the 20 tablets he has to take a day.

Ryan says he worries about what he can leave Kate and children because in his words, he'll be lucky for 5 more years and that's if the live treatment continues to be effective. He's due another lumbar puncture and another brain and full.body scan as he's still having debilitating headaches. He has since been referred to Salford Royal neuro dept.

Every time he's admitted to the hospital it’s the same, he's prodded and poked and the doctors are so baffled by him so they know everyone there because he is such a complex and unpredictable case and because of this they have weekly appointments to monitor him.

Everything is understandably draining for the whole family and Kate says trying to keep upbeat for him is hard because of the effect the past 1.5 years has had in her and it's also all made him so depressed, and he feels a burden.

They have an unpredictable journey ahead of them and need that making a little easier.