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Stephen's Story

Stephen was one of life's angels. He would do anything for anyone; he always saw the best in people and was so incredibly positive. He adored me and our two sons, Seb (15) and Hugo (8), and loved his friends. That's why our story is so incredibly devastating and heartbreaking. He has left a massive hole in all our lives.

Stephen was never ill. He took pride in his appearance and looked after himself. He went to to gym, played football, ate healthily and had just bought himself a bike to get even fitter. Leukemia does not care about any of this! 

At the beginning of 2021, Stephen started to feel unwell. He was having regular bed sweats, had an uncontrollable thirst and was feeling tired. His telephone appointment with the GP resulted in him being tested for Type 1 diabetes. The tests came back negative but Stephen continued to have the same symptoms. He spoke to the GP twice more and again had tests to see if he had diabetes. (He was never seen physically during this time, which might have changed everything). On the fourth telephone appointment the GP referred him for an X-Ray as he said that he could have TB. He received his X-Ray 13th April 2021, which revealed a shadow, and we were told that it was probably nothing to worry about but Stephen would need to be sent for a CT scan.  

He received his CT scan two weeks later. However, while waiting for the results, on the 3rd May, I heard a crackle in his breathing when we woke up. I convinced him to call 111. He was admitted to North Tees Hospital, where they did various tests. In the meantime the results of his CT scan showed that there was a tumor on his lung. They discharged Stephen on the 4th, so he could come home for his birthday on 5th, and to wait for more tests in relation to the tumor. We really didn't know what to make of it all. 

On the morning 9 May, Stephen was in tears and was frightened that he couldn't breathe, and I had to call 999. Devastatingly, this was done in front of our children, and he was rushed to hospital by ambulance. He had his lung drained of fluid that day and came home. He was incredibly tired during that time and lost his appetite. On the 13th May, again, I had to call the emergency services and he was taken to North Tees and had his lung drained. Yet, this time he was admitted to the Respiratory Ward. During this time, he dramatically got worse. He had a lung drain fitted to continually drain his lung and his breathing also got worse.  

After doing numerous tests, the hospital originally diagnosed Stephen with Non Hodgkin's Lymphoma, then a week later with T-cell Acute Lymphoblastic Leukaemia (ALL). We were informed that it was a very aggressive and rare type of leukemia in adults. He was then rushed to James Cook Hospital, where his diagnosis was confirmed.

We were told that Stephen's white blood cells were 150, having raised from 68 from a few days before, and that if he didn't start chemotherapy that day (Thursday 27th May), he would die in a couple of days. I don't think either of us had ever been so frightened. However, we were also told that they aimed to cure Stephen and he would have to have a bone marrow transplant. 

He started chemotherapy that night, and then at 1.30am on Friday 28th May, I received a phone call from the ICU to say that Stephen had been rushed in as he'd developed tumor lysis, and need dialysis. At that moment, I realised that Stephen might not make it. 

Stephen recovered quite quickly after that first initial scare. He responded positively to treatment and came home earlier than expected. He needed full time care due to him being weak, to be taken to hospital appointments and from the amount of medication he was taking, so I had to leave my work as a 1 to 1 English tutor, to care for him.

We then started the journey of chemo. For his second round, we had to go to James Cook every day for treatment. This coincided with the school holidays, so our children had to come with us. Sometimes, we would be waiting for Stephen for 5 hours if he needed a blood transfusion, or platelets. At times Stephen would have to be rushed into hospital because he had a high temperature. Again, this was our children in tow. It was a relentless journey. Nevertheless, we had the end goal in sight as we visited the Freeman Hospital to make arrangements for his bone marrow transplant to commence in the November. 

His third round of chemo started at the end of September, and it involved a hospital stay. During that time, he started to complain that his vision was fuzzy. It transpired that the leukaemia had developed in his right eye. With it then came the unbearable pain and Stephen had to be given morphine. He developed bell's palsy, and had to wear a patch over his eye to be able to see out of his left. It was at this point, we discussed his funeral. 

We were given a life line and Stephen ended up having one more round of chemo. This set back the date of his transplant a month, and would mean he would be in over Christmas. However, we knew it would all be worth it.

Towards the end of November, Stephen deteriorated again. The leukemia spread to his left eye, and again came the excruciating pain where he had to be fitted with a morphine driver. We were told that he wouldn't be able to have his bone marrow transplant and would have to start palliative care, with weeks to a month left to live.

Yet again, we were given another lifeline and we were told that the Freeman suggested that Stephen could have extra radiotherapy to his head, as well as his full body, chemotherapy and then the transplant. The odds were against him, with only 10-15% chance of survival, but he was determined to win and beat it. We were so grateful for this last chance.

Stephen went through all the treatment with ease. The Freeman were amazing, and treated him so well. He had his transplant on 29th December, and it was a success; his numbers were great. This was when things started to change for the worst. He got sores in his mouth, chronic hiccups (which he couldn't get rid of), he was constantly dehydrated, and his oxygen levels were low. His mobility also deteriorated; he was incredibly weak and became quite confused. 

He was eventually put on a ventilator in the ICU, where he actually made good progress to begin with and I was told he would come off after a week, but within days I was told he would die.

The day before he died, the children and I were able to see him. We read to him, and sang, as well as said a prayer with the Hospital Chaplain, Katie.  It's horrifying to think that that is the last memory for our youngest son of his daddy; to be covered in tubes.

I stayed the night at the hospital, and on Wednesday 2nd February, Stephen died holding Seb's and my hand. He died peacefully, with dignity and grace, and I have a lot to thank the Freeman for, for that. 

Spotting the signs of Leukaemia

According to Leukaemia Care, "Currently, patients with leukaemia have a significantly higher rate of emergency diagnosis than other forms of cancer. The highest emergency presentation rates for any cancer type occur in acute lymphoblastic leukaemia (ALL), at 66% of patients. This is a huge difference when compared with the overall cancer emergency presentation percentage (21%).

Unfortunately many people aren’t aware of the signs and symptoms of leukaemia until they or someone they know is diagnosed. This leads to a delay in visiting a GP, which can delay a diagnosis, worsening the outcomes for patients.

Quite often, due to the non-specific nature of the symptoms and relative rarity of leukaemia, people are misdiagnosed by their GP or attend several times before diagnosis. This means that there is a delay at primary healthcare.  

Early diagnosis saves lives"

The signs are:

1. Fatigue
2. Shortness of breath
3. Fever or night sweats
4. Bruising or bleeding
5. Bone/joint pain
6. Repeated infections 

Stephen also had the symptom of thirst.

(Ref : Spot Leukaemia | Blood Cancer Awareness Month | Leukaemia Care)

Behind the fundraising

Stephen has a huge group of friends, who he has known for most of his life. When Stephen was first admitted, they all clubbed together and bought him an iPad and AirPods to use when in hospital. They came to do things in the garden, clubbed together to give us money for Christmas, and also paid for Stephen's reception for after his funeral. They have done so much for us, but its because of how much they thought of Stephen, or 'Rickers' to them!

I was overwhelmed when 'The Lads' contacted me about competing in RideLondon2020 in Stephen's honour, to raise money for a charity of our choice, as well as awareness of the signs and symptoms of ALL. I asked the Freeman Haematology department who they would recommend and they gave me Bright Red's information. 

About Bright Red

We are just a team of two! Lisa and Angela. 

Bright Red focus our support on the northern region, and help patients who are dealing with a wide range of blood cancers. The more common diseases are leukaemias, lymphomas, and myelomas. We also help support patients suffering from myelodysplasia and myeloproliferative diseases.

We are able to review grant applications from any adult haematological unit in the northern region – hospitals include Northern Centre for Cancer Care, North Tyneside Hospital, Wansbeck Hospital, North Tees, The Friarage, Hexham General, North Cumbria, James Cook, and Durham Hospital. Support can include investment in improving patient care or contributing towards staff development.

Bright Red fully fund 5 Haematology nurses across the region and have for the past seven years! Each nurse work in a different hospital within the North East. As well as the nurses we have also funded the isolation rooms, waiting area, patient toiletry bags and provide patient care awards. One of our goals is to support research into blood cancers. Since 1996 more than 4 million has been donated to support research at local academic institutions. 

We assist in the education and training of healthcare professionals dedicated to treating patients with blood cancer. 

We have various events and fundraising ideas this year, some of which include our very popular memorial tree planting at Northumberlandia in Northumberland. This is a chance for people who have lost a loved one and would like to plant a tree in memory, which will last for years to come. We have a new site this year at Weetslade Country park in Wide open, which we are hoping to start planting from October this year. We also have other events including a dragon boat race, a charity golf day and even an abseil down a wind turbine which will be the worlds first! 

Bright Red have organised lots of events again this year, which every single penny raised goes directly to helping those with all types of blood cancers.

Bright Red | Fighting blood cancer for a brighter future

Donations

Stephen's death was not in vain. If we can raise as much awareness of the signs and symptoms for leukemia, or any blood cancer, to prevent what we have gone through for another family, then we have turned this horrific, awful thing into something positive. I know Stephen (Rickers) would be so proud. 

If you could please donate £10, you would be making such a huge difference to this amazing charity, and to people living with blood cancer. 

This would not be possible without his wonderful friends, who have shown us all so much love. This has been all their idea!

Thank you for reading,

Anne, Seb, Hugo, and so importantly, 'The Lads'. 


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