Help Steven Beat Cancer #round4fight
Donation protected
As many of you know, my brother Steven, has been battling cancer since 2019.
Steven successfully beat Hodgkins Lymphoma (stage 3) cancer in May 2020, after receiving 6 months of (ABVD) chemotherapy.
In December 2020, he started to feel unwell again and was informed he was anaemic from recent blood tests. He started iron supplements but to no avail, there was still no improvement. He lost all his colour, was extremely fatigued and breathless.
He started to lose weight again, accompanied with night sweats (classic Hodgkins Lymphoma symptoms). He told us just before Christmas, that he thought the cancer had returned.
Upon receiving the results from the CT/PET scans and biopsy, it confirmed our worst fears.
Steven had relasped and was diagnosed with (stage 4b) widespread Hodgkins Lymphoma. It was worse than the first time, as it had now spread to his spleen, lungs, stomach, sternum and groin.
It was recommended that Steven start an intensive course of chemotherapy, that would require him to receive a high dose as an inpatient over the course of a few days.
Things didn't go to plan and sadly Steven had a rare reaction to one of the chemotherapy agents (ifosfamide) and developed encephalitis. Encephalitis is inflammation and swelling of the brain.
He became unresponsive, he couldn't do anything for himself. We were all vexed at the situation and we couldn't even be with him due to covid restrictions. I received a phone call at midnight to say he had suffered a massive seizure, which resulted in him having a heart attack and had stopped breathing.
I will never forget that drive down to the hospital. I kept thinking I wouldn't make it to see him. My heart was in my mouth and I couldn't move my legs fast enough to run from shaking so much.
Once I arrived, he was intubated, a tube that goes in and helps him breathe. Seeing his lifeless body will haunt me forever. They said they needed to take him for a urgent CT scan and then he would go to intensive care, to be placed into an induced coma to let his brain and body rest.
As I watched him being taken away and his hand slipped out of mine, I felt feelings I had never experienced before in my life. I feared I may never see him again.
Many people who know myself and Steven, know how extremely close we are as siblings. I felt a part of me died that night and I still have trauma to this day.
Steven was put on life support and spent 4 weeks in the intensive care unit (ICU).
He lost so much weight, going down to 10 stone. Everyone that knows Steven, will remember him as a big, bulky guy, who used to weight train and go to the gym. I just kept on thinking, that can't be my brother, it seemed like an imposter.
Steven continued to have seizures in ICU. We were essentially told the cancer would have to take a back seat as they had to get him neurologically better. He was placed on the the adults with incapacity act (AWI), as he couldn't make any decisions for himself or even had the ability to communicate. I was losing hope but I knew he was fighting to stay.
Every day felt like a month, it was an immense stress on myself and my family. As we weren't allowed to be with him due to Covid, we could either see him via an iPad, or sit outside his window.
I felt so helpless that I couldn't even hold his hand. I remember sitting outside his window in the sleet and wind, it was so cold. I couldn't feel my hands or feet but I didn't want to leave him. I would hope he would move or open his eyes but he remained still. All I could hear was the machines. I sat for hours until I couldn't bear the cold anymore.
After a few days, his eyes would flicker to our voices. We would speak to him via the iPad and chat away with him. It was unbearable seeing him looking so poorly, talking about happy memories when your heart was breaking inside. But we had to be strong. We had to keep spirits up to encourage him to fight for his life.
We got a phone call to say they were planning on extubating him (removing the breathing tube) to see how he goes.
They successfully done it and Steven was breathing unaided. This was the breakthrough we needed.
He was extremely confused and couldn't talk. I was so worried as he looked so vacant, I feared that he had forgotten who I was. He had regressed terribly. I always thought he looked like a wee frail man with dementia.
The CT scan showed that he had brain atrophy. His brain had lost a lot of it's volume and it was now of a much older person. The brain is the only organ that cannot regenerate, so sadly he will not be the same Steven that we once knew.
He was diagnosed with chemotherapy related encephalopathy (a brain injury caused by the chemotherapy being too toxic for his body).
Essentially he went into hospital to save his life and this tragically happened. It has been like a living nightmare.
The consultant from ICU, told me it was a miracle he was still alive as "they had no hope for this boy". Those words really stuck in my head and I didn't quite know how to feel upon hearing that.
After a further 4 weeks in the haematology ward, we had a meeting with various health professionals. There was talks of him going to a brain injury unit or a care home. As myself and my Mum are from nursing backgrounds, we objected and requested we look after him at home, as Steven always thrives around his family.
The rehabilitation was extremely hard but we pushed through with assistance and encouragement to let him reach his potential. He had to learn to talk, eat and walk again.
As the AWI was revoked, he was deemed neurologically "ok" to consent to recieve chemotherapy once again (albeit it, with someone with him) as his memory is extremely poor.
Steven requires very simple explanations, often repeatly, and a lot of reassurance as he forgets what is happening or where he is. I often have to remind him who I am and where he is.
He received a short infusion of a new chemotherapy, (Brentuximab). He seemed to improve over time and the scans showed that the cancer was "inactive". We were all so happy that things were eventually improving. There was light at the end of the tunnel.
Sadly after four months of treatment, the cancer had returned to be active again. The third relapse. We were bereft at the news. How many more times could Steven and us as a family, go through this.
We met with the Haematologist, who suggested another new chemotherapy (Pembrolizumab).
I was slightly apprehensive reading the information, often reading more about the rare side effects as to what happened prior made me wary.
"Inflammation of the brain" and "seizures", were the ones that immediately stood out to me. Surely it couldn't happen again? We were stuck between a rock and a hard place on what to do. His consultant said it was the best route to take and reassured us that it had good effects for Hodgkins Lymphoma and had not experienced any cases of that happening.
Steven received the dose of chemotherapy on the 27th of January, 2022. He was in good positive spirits as he always trys to be. We thought this could be it, the cancer will go away. He was feeling better in himself after one infusion.
Then came the 31st of January, 2022. My Mum phoned me extremely upset, to inform me that Steven was having a seizure. That dreaded feeling came again. The five minute drive seemed a life time. My legs were like jelly trying to run from the car. Steven was having a full blown tonic clonic (grand mal) seizure.
His oxygen saturations were only 52%. You or I would be sitting comfortably at around 98-100%. I knew he needed oxygen fast. His heart rate was through the roof. At one point I thought, I'm going to have to do CPR on my brother if things don't improve. The ambulance arrived and he was blue lighted to hospital. He was put into another induced coma in ICU.
I couldn't believe this was happening again. My heart actually hurt and I sobbed and shook uncontrollably driving down to the hospital.
Steven was stable but it was "very touch and go" as the Doctor told us. He was extremely unwell and unresponsive. We sat in the relatives room in silence. We were then allowed to go and see him. He looked so poorly and vulnerable. Tubes and wires everywhere again.
Eventually, he was able to breathe unassisted off the ventilator. He had received a blood transfusion and when I sat with him, I smiled. He had so much colour and looked very much like the previous, healthy Steven, not an imposter this time!
He was all ready to come home on the Friday but he took another massive seizure in ICU. We were all devastated. I went in to see him and he was constantly having absent seizures and was fidgety. I wasn't even able to hold his hand due to this.
He became extremely confused and frightened. A type of delirium that a lot of patients can experience after being sedated. Due to his brain injury, I knew he just didn't understand and would be better in his home environment. He was discharged and more content at home.
A few days later, whilst he was home, he suffered a further two tonic clonics again. Another ambulance to the hospital. It felt like groundhog day. He was placed in the high dependency unit (HDU) and we took it in turns to stay with him, so he wasn't on his own.
The neurologist suggested that the cancer may have spread to his brain but he would require an MRI scan to confirm, at the Queen Elizabeth hospital in Glasgow. She said the waiting times for this are poor and couldn't tell us a time scale. This was another big blow.
The amount of strain it has put not only on him, but as us as a family, has been unimaginable stressful.
I fear we are running out of options. We receive no help with caring out with family and friends. With your help, we can cover additional medical expenses and future therapies.
This would enable us to look at other treatments and in addition, neurological input, in a much quicker time scale.
As Steven had tried many chemotherapies and his body has become weaker, they are more prone to be ineffective and/or producing more rare side effects.
However, there is the option of a stem cell (bone marrow) transplant that would be successful. He is not well enough to recieve it as of yet, but alternative therapies can be put into place to deem him "fit" to recieve the transplant.
An allogeneic transplant from a full match relative (e.g myself), would cost around £21,110.
An allogeneic transplant from a non-relative full match (an individual on the nationwide donor register) is estimated to be around £37,700.
Due to Covid restrictions, transplants are being delayed. Even then, you are only allowed one attempt through the NHS.
In addition, Steven's chemotherapy and scans have been delayed on occassions due to Covid restrictions. Time is of the essence and unfortunately, time is not on our side.
It would help us all immensely to stay in accommodation nearer to the hospital or cover taxi costs, as the driving alone, is exhausting and quite frightening when mentally and physically fatigued.
Not only does Steven have the biggest fight of his life (a huge battle to eradicate the cancer for the fourth time), his and our lives, have changed forever.
He has had to adapt to live with a life long brain injury and management of his epilepsy. It is more than likely, he will never lead an independent life again and is solely reliant on myself and my family. He is only 38 years old.
We are hoping to adapt an environment that is catered purely for his needs. This is the closest thing he will have to living independently and someone will always there for him to assist him.
He deserves a break in life, and with your help, we can make it as stress free as we can.
Thank you so much for taking the time to read Stevens journey.
We are so thankful for the support and any donations you may make.
The Haines family x
Co-organizers (3)
Sarah Haines
Organizer
Scotland
Sam Haines
Co-organizer
Brian Clarke
Co-organizer