Sammy Jo Brandon
No parent wants to be told that their child is terminal, but it happens. From that point on, life is going to change. How someone deals with it and the effect it has will vary from person to person.
Kim and I were with our daughter Sammy Jo at her Oncologist appointment when he told us that she was terminal. Her secondary cancer, also called Metastatic Cancer, is incurable.
This was two years ago (March 2018) and since then, our lives have been turned upside down. Every expectation, every dream we aimed for, individually or as a family, has been taken from us.
We were told at that appointment that her life expectancy was about eight weeks. She passed away on May 14th 2018.
We had that period of time to say goodbye and to discuss/fulfil as many of her wishes and dreams as were physically possible.
Since then, we have worked hard and devoted a lot of time, effort and money into carrying out some of the wishes she wanted to happen after her passing.
I will go into more detail about these another time but, one of the wishes she asked for is what brings me to write about the “Sammy Jo Brandon Foundation” here today.
During a deep and emotional conversation with Sam whilst she was in hospital, I was amazed that she was more concerned about how children go through the same horrific journey that she had – dealing with cancer and the treatment – rather than the fact she was about to die. She would often break down in tears, getting deeply distressed about the children.
The only piece of comfort I could give her was to assure her that we would carry out her wish – to raise money at her funeral for Children With Cancer UK (CWCUK).
Children with Cancer UK is a charity that she became attached to from the early stages of her illness. The more we found out about CWCUK, the more we knew this was the right charity to support in her memory.
There are so many things that CWCUK and Sammy Jo’s journey have in common. The founder of CWCUK Eddie O’Gorman was asked by his 14year old dying son, Paul O’Gorman, to help other children with cancer.
In 1988, the same year that Sammy jo Brandon was born, the CWCUK charity was founded and just 9 months later, Eddie also lost his daughter to breast cancer.
Sammy was first diagnosed with breast cancer in October 2015 at the age of 27. The cancer was identified as Triple negative breast cancer. This cancer is linked to the BRCA1 & BRAC2 gene. You may have heard about this gene if you followed the Angelina Jolie story of preventative breast cancer surgery.
There are different types of breast cancer and many of them can be treated with hormone therapy along with chemotherapy and radiotherapy, but Triple Negative breast cancer does not respond to hormone therapy medicines. Sammy had a lumpectomy followed by 8 rounds of chemotherapy.
While discussing her treatment options, Sammy Jo made it quite clear to her doctors, and us, that she would not have, or consider, chemotherapy until she had IVF treatment.
Sammy Jo’s desire for children was so strong that she did not want to live if she could not have her own children, so it was arranged by her Oncologist to start IVF treatment.
During this time, Sammy researched unconventional and alternative treatments to chemotherapy. This led to a lot of disagreements between us, but eventually I realised she was determined to fight this battle her way.
It was very difficult for me to accept that she was an adult and had the right to make her own choices. Eventually after two rounds of IVF treatment, Sammy got her required number of frozen embryos. She then, reluctantly, agreed to Chemotherapy.
There was one more thing she had researched and wanted before Chemotherapy started. She read that studies had shown that an injection of goserelin (Brand name Zoladex) into the abdomen may protect ovaries during her Chemotherapy. This was arranged and administered at our local GP surgery before the eight rounds of Chemotherapy started (January 2016).
Jack, Sammy’s boyfriend, Kim and I, promised her that we would be with her every step of the way, which meant going to every appointment, every operation, every piece of treatment she had, and to comfort and reassure her along the way.
She had eight rounds of treatment and they were every three weeks. We waited on her hand and foot, feeling sorry for her. Seeing someone you love suffer is heartbreaking.
The next few months were very difficult for all of us for a number of reasons. Sammy was very fearful. Fearful of Chemotherapy, fearful of dying and very anxious about losing her hair. So she decided to use the “Cold Cap”.
The Cold Cap is a tight fitting hat that reduces the temperature of the scalp, reducing the effect of the Chemotherapy running round the hair follicles. Not many patients can tolerate the effect of the cap and end up discarding it very quickly.
Not Sammy. When she was focused on something she always found an inner strength that amazed me and she was determined to do everything she could to save her hair. At the end of the Chemotherapy, she still had a good head of hair, even though it was a lot thinner.
She had no intention of seeing anyone until her hair and general appearance was back to her level of acceptance. She wanted to start feeling good about herself again. All of her confidence had gone.
Like a lot of people, I don’t think she was ever totally happy with her body or her looks. You can see by her photos, she was a very attractive girl and had no real reason to feel that way, but the pressure on girls today has that effect – actually, not just girls but all ages and genders.
Slowly, her confidence began to return and she started going out, with us and on her own. She even moved into her new house and was living on her own.
We were so proud of her and the progress she had made, but I was still a little worried about her health. She was complaining about her vision and headaches. This was at the end of the summer 2017.
Eventually she had a CT scan done in December and we had an appointment for the results straight after Christmas. They said they could not see any cancer and her headaches may be linked to the Hemiplegic migraines that she suffers with. I had a niggling feeling that we were going to get bad news but to my surprise, it was great news. I was filled with optimism for the approaching New Year.
Danny, our son and the elder of our two children, had booked a holiday – a log cabin in Cornwall for just the four of us. This was the first time the four of us had been on holiday alone in many years, and we were all in need of a rest. We were physically and mentally drained.
Whilst we were away, Sammy spoke of getting back to work and seemed focussed on moving forward. She was working on her fitness and she was more comfortable with her hair now that she had her hair extensions in.
She told us that she had arranged to help out a friend in her flower shop, just for a couple of hours here and there, to help herself adjust to normal working life.
The second week in February, whilst helping with Valentine orders in the flower shop, we got a phone call telling us that Sammy had passed out and they were waiting for an ambulance. Gathering more information after we got to the shop, it seemed more like a seizure than just passing out.
They did not give her a CT scan at the hospital because the previous scan was only done six week before. She was discharged with mild anti-seizure drugs and was to be referred for further investigation as an out-patient.
Three days later she had a full blown seizure, at home with us, and we ended up in A&E again.
Whilst they were trying to take blood at the hospital, she had another seizure which made them do another CT scan. I stayed with Sammy in A&E that night and Kim went home to sleep.
About 7am the next morning, a consultant came to see us with the results of the CT scan. The results were not good. The cancer had returned in her brain and they made an appointment with her oncologist to have an MRI scan.
At that next appointment, the MRI scan showed the cancer had also travelled to her lungs.
The oncologist referred us to a brain surgeon for brain surgery. This was the start of many hard conversations I had to have with Sammy.
Explaining things to her in a way she would understand is something I had always done, but telling her of all the possible outcomes brain surgery could have was difficult and emotional.
She understood and agreed that we had to get Lasting Power of Attorney and a Will in place before the surgery in three weeks time.
They removed one large tumour from the back of the head and a few little ones, but the large frontal lobe tumour had to be left alone.
She was kept in hospital for a while before she was discharged and the plan was to have another MRI scan done in a couple of weeks time, ready for our follow up appointment with the oncologist.
It was at this appointment that we found out she only had approximately eight weeks to live. A combination of the MRI scan and the biopsy of the brain tumour showed how fast the remaining tumour was growing.
Sammy made a decision that gaining an extra few weeks of life by having more treatment was not worth it. She had suffered so much with the previous chemotherapy, she just wanted to say her goodbyes feeling the best she could.
The eight weeks that followed, I will cherish for the rest of my life. She planned her own funeral and celebration of life party.
She made parcels up to be given to friends and family, and she left Kim and me with a list of things to do.
The strength and bravery she showed, along with lots of laughter during this eight week period was exceptional.
UPDATE: On the 14th May 2020, two years exactly to the day we said goodbye to Sammy, we launched this website under The Sammy jo Brandon Foundation and in her honour.