Background

Candice was born in Johannesburg in 1987 to a British Mother and South African Father. She had the usual childhood illnesses but was generally a healthy, happy child.

She moved to the Wirral aged 10 in 1997 and attended Ladymount Primary School before going to Pensby High School for Girls and then Birkenhead Sixth Form College. Candice didn’t feel that the academic route was right for her and she was eager to get into the world of work. Candice wasn’t afraid of hard work and got her first waitressing job at The Heatherlands as soon as she turned 16.

At 19 Candice was as settled as most young people her age, she had started work for Halifax bank in Chester, was in a long-term relationship and was doing all the things young people do, enjoying her life. She was often tired but we put that down to burning the candle at both ends. She was also quite pale but that was fairly common for Candice over the winter months as her olive skin didn’t like English weather! But life was exciting and we had just booked a family trip for the end of July to see some good friends in Toronto and spend a few days in New York.

Diagnosis

At the beginning of July 2006 Candice developed a bad throat infection. Our usual course of action for things like this was rest and plenty of fluids and the usual array of painkillers and cold medication. After a few days it wasn’t getting any better, in fact it was getting worse and Candice went to see the GP. He thought it was Glandular Fever and told her to come back in a week for blood tests (apparently Glandular Fever doesn’t always show immediately). By this stage we were getting really concerned and phoned the GP ourselves. He confirmed that he thought it was GF and that it would be bad before it got better.

On Tuesday 10th July Candice went for blood tests and in the afternoon the GP rang to say that she needed to go into hospital for more tests. He mentioned that there was a problem with her White Blood Cells and that I should phone him. I phoned and he told me that they Candice’s White Blood Cell count was too high and that they would be doing a Bone Marrow Test. We took Candice into the hospital and she was admitted to Ward 30 at Arrowe Park where they started doing tests. She was extremely ill at this point and we were spending most of our time at her bedside.

It was lunchtime on Thursday 12th July and we had just gone home for an hour to eat lunch when Candice phoned us and said that the Consultant wanted to see us. We rushed back to the hospital and I remember a crowd of people; the Consultant, Specialist Nurses, the Haematology Pharmacist, all in this little room while Dr Butt told us that Candice had Acute Lymphoblastic Leukaemia (ALL). Her bone marrow was producing too many immature White Blood Cells and they were crowding out all the good cells, she had no good White Cells to fight infection, she was very anaemic and her Platelets, which help the blood clot, were very low. What we later found out was that Candice had been bruising really easily for a few months before but we didn’t know and she didn’t realise anything was wrong.

Our lives completely turned upside down that day. Candice was so ill that she needed to start chemotherapy straight away. There were so many things to take in but Candice’s first question was “Am I going to die?”. It was a question that nobody could really answer.

Treatment

Candice was put on the standard treatment protocol for ALL. We were told that this is the type of Leukaemia usually found in children and for them there was about a 90% cure rate. Unfortunately, the odds are not as good for adults but we were determined to be positive and fight this disease. Candice made the decision that she didn’t want to read up too much on her illness. She needed to focus all her attention on getting well again.

There were so many things to think about; the loss of her hair, the changes in lifestyle, the long treatment program (24 months at least) and the biggest blow for Candice, her almost certain loss of fertility. Ever since Candice was a little girl herself she had always known she wanted to have her own children and the news that she probably wouldn’t be able to was devastating. We asked about the possibility of harvesting and freezing her eggs but there wasn’t enough time (it takes 3 months of boosting fertility before they can harvest enough eggs) and even if there was time the nearest place that could have done it is Manchester.

Candice decided to cut her waist length hair short so that it wouldn’t be such a terrible shock when it fell out as a result of the chemotherapy. In fact, because she had such thick hair Candice managed to keep hold of it during the first 6 months of chemotherapy, it was only when she was sent for radiotherapy on her head that it eventually came out.

Candice had a PICC line inserted in her arm. This is a line that goes near to the heart and allows chemotherapy to be delivered efficiently and effectively. The line is also used to draw blood – an almost day occurrence when you are being treated for Leukaemia.

Candice started chemotherapy and everything went as it was supposed to. The side effects weren’t too bad and she actually achieved remission (less than 5% of the disease present) after her first month of chemotherapy.

And so this awful journey began…

July 2006 to April 2007

Candice flew through the first 6 months of chemotherapy really well. Her hair thinned, she dealt with the nausea and the treatment was working. But our lives had changed dramatically. Candice spent lots of time as an in-patient and we got to know Ward 30 very well. The treatments themselves were sometimes really unpleasant and painful. Initially, the nurses were a bit sceptical with regards to how Candice would handle everything and I know Candice had her own doubts. She wasn’t sure that she’d be strong enough but if you knew Candice, you’d know what a strong, stubborn character she was. She was amazingly strong and brave, even dealing with Bone Marrow Extractions and chemotherapy injections into her thigh muscles without complaint. She was prepared to endure it all to get better again.

There were complications, infections and then the PICC line had to be removed because it had caused a clot in her shoulder, so Candice and I had to learn to inject her stomach with Heparin every day for 3 months. Instead of trying another PICC line in the other arm, they opted for the first of what would be a series of Hickman lines. They are inserted into the chest and allow chemotherapy to be put directly into the cardiovascular system. Unfortunately, they can also harbour infections and no matter how careful you are with hygiene, they still have to be removed once an infection takes hold. The longest Candice kept one in was for about 3 months.

During the times in hospital we and her boyfriend were visiting every day, taking food in for her, buying TV viewing cards, buying magazines and things to keep her amused and brighten up her room. Because of the nature of the treatment and the way it lowers the immune system, in-patients have their own individual rooms and bathrooms. Often they are not allowed or able to leave their rooms for weeks at a time so visitors are a lifeline back to the real world.

Lifestyle Changes

There are so many things that change when you are diagnosed with Leukaemia. Food becomes a real problem, certain things like seafood are off the menu, eating becomes difficult because of nausea so weight loss starts, then steroids increase the appetite and we spent so much time in supermarkets looking for tasty and allowed treats. Microwavable and home-cooked meals were best because we knew what was in them and they could be heated to kill off any germs.

Cleanliness becomes paramount and anti-bacterial products became our best friends. Lots of families in our situation get rid of their pets but we felt that wouldn’t be helpful for Candice on an emotional level. Socialising became very difficult for Candice as she was advised not to be in crowds – so no pubs, parties or shops. Finding a balance between being careful and normality was hard at times but we had to still let Candice live her life her way.

Radiotherapy

In February 2007 Candice started the radiotherapy to her head. It is an essential part of the treatment for this disease as Leukaemia cells can lie dormant in the brain. The treatment is intense and causes extreme nausea. It also caused Candice to lose her hair for the first time. She had a little cry about it at first as it started to come out but dealt with it in her usual amazing fashion. While I was out shopping one morning she sent me a photo – she’d shaved all the remaining bits off and she looked gorgeous with a big smile on her face. Although Candice did make use of the wigs provided by the NHS and sometimes wore hats, she was just as confident going out with her head bare as well. Even the scars from the various Hickman lines didn’t seem to bother her – she saw it all as a small price to pay for health.

May to August 2007

Candice developed pneumonia. One day we were just going through the usual in-patient routines, the next she was having problems breathing and the next day we were in the Intensive Care Unit. For the first time we faced the very real possibility of losing her. Seeing your child helpless and dependent on machines and being told she might not make it through the next 24 hours is one of the worst things a parent can experience. Thankfully the drugs they were giving her started to work and by day 3 in ICU she was breathing almost normally again and complaining that there was no TV in ICU! She was transferred back to Ward 30 on day 5. Unfortunately, this wasn’t the end of the complications.

Candice had an undetermined fever and underwent scans and x-rays and blood tests to try to find the source of the infection. Eventually they started treating her for a womb infection but she was getting more and more unwell. She started to experience tremors in her jaw and a day later her speech started to slur very badly. She sounded like she’d had a stroke. As soon as her consultant saw what was happening he requested a spinal tap. Leukaemia in the brain can cause these sort of symptoms and there is only a 20% cure rate.

By the next day things were even worse and Candice was convinced it was the antibiotic that they had been giving her for the womb infection. She was so ill by then that we were ready to try anything to stop her suffering – she couldn’t even keep water down and was retching every half an hour or so. So when the nurse came to give her the next dose we refused to let her have it even though the doctors had all assured us that it wouldn’t be the drug.

The spinal tap came back clear but there was no reason for relief, in fact the news was potentially even worse. An MRI scan had shown inflammation of the white tissue in Candice’s brain similar to that seen in patients with HIV or Mad Cow Disease. We were told that the disease is progressive and degenerative and it could take anywhere between 5 months and 5 years for Candice to die. Up to 5 years of her gradually losing all control of her body and her bodily functions. Every day the news seemed to get worse and worse. Ward 30 staff contacted Macmillan nurses to see what they could suggest to relieve the nausea and on their advice gave Candice a steroid injection. The doctors also requested a Neurological consultant to confirm their suspicions and they agreed to stop the antibiotic that Candice thought was causing her problems.

The next day when we walked into Candice’s room we were amazed to hear her say “hello” to us. Her speech was almost normal again and her constant vomiting had stopped. The doctors warned us this could be a temporary effect from the steroid injection but they were wrong. Candice’s symptoms completely abated over the next few days and by the time the Neurologist saw her there was really nothing for them to see. However, it still took 6 weeks for the doctors to tell us that Candice had been right all along and it was the Metronidazole that had caused the symptoms. It taught us and Candice’s medical team a valuable lesson – sometimes the patient knows their body best.

From there on in things seemed to get better and there were less in-patient visits until eventually Candice moved onto the last phase of treatment which meant oral chemotherapy and regular visits as an out-patient to Ward 30.

We were delighted when Candice was well enough to act as a witness to our Civil Partnership. The whole day was a celebration of what we had come through as a family and to symbolise this we bought Candice a ring to go along with our wedding rings. After the ceremony we left for Cornwall – our first family holiday since Candice was diagnosed.

October to December 2009

Candice officially finished treatment on 13th October 2009. The level of Minimal Residual Disease (MRD) in her Bone Marrow was undetectable. She still had to go for regular check-ups but the Hickman Line finally came out and life returned somewhat to normal. Candice had moved to Leeds to be with her boyfriend, she’d returned to work and she was back doing all the things a 21 year old should do. She was making the most of her second chance.

In November 2009 Candice found a lump in her left breast. A few days later she had a check-up appointment with her Haematology consultant at Arrowe Park Hospital. All her blood results were completely fine and she appeared completely healthy. He examined the lump in her breast and her lymph nodes under her arm but told us that it was unlikely to be related to the Leukaemia and advised us to see our GP. Our family GP saw Candice the same afternoon and made a referral to the Breast Clinic at Clatterbridge Hospital telling us that she thought that it was probably a cyst and nothing to worry about.

Two weeks later our world came crashing down again. The biopsy of the breast lump showed leukemic cells and we were referred back to the Haematology Department where their tests confirmed that whilst there were no new leukemic cells growing in her blood or bone marrow, there were obviously still leukaemia cells in Candice’s body that had not been killed off by the previous rounds of chemo and radiotherapy.

This meant that she would be treated as though she was in full relapse and it meant we were back to looking for a bone marrow donor. In the meantime, Candice would start chemotherapy again straight away and would have radiotherapy on her chest. It was devastating news and we all took it very hard. It was difficult to contemplate such serious news when to all intents and purposes Candice looked and felt completely well. It also meant that Candice’s future was on hold again – she cancelled a planned visit to friends and family in South Africa which was scheduled for January, and she had to let Chester University know that she wouldn’t be starting her Nursing Degree in March as planned.

Christmas and New Year were a very subdued affair in our household that year as we were all dreading what 2010 would bring.

January to June 2010

In January Candice started chemotherapy and soon after radiotherapy. A glimmer of hope appeared when her Consultants told us that they had found a bone marrow donor match for her. In actual fact, they had found two, but not in the conventional sense. What they had found were two lots of umbilical cord stem cells (one from Spain and one from Texas) which they would use together. This would be a completely new thing in the North West of England although it had been successfully tried and tested in other countries and in other areas of England. In fact, at one point there were discussions about Candice having the transplant in Nottingham because they had experience of doing this sort of transplant. In the end it was decided that they would go ahead at The Royal Liverpool Hospital.

On Monday 31st May 2010 Candice went into the Bone Marrow Transplant Unit at The Royal Liverpool Hospital and on Friday 11th June, just as the World Cup was starting in South Africa, Candice received the stem cell transplant that we hoped and believed would get rid of the Leukaemia once and for all and allow her to get on with her life. It seemed to be a such good omen that we were watching the Opening Ceremony in the country of her birth while she was receiving the infusion. The Professor who headed up the Haematology Department felt that Candice had an extremely good chance of sailing through the transplant as she was so healthy going into it.

We had however been warned by the Transplant Co-ordinator how bad the side effects of the treatment would be but at that stage Candice still felt strong and determined and we just thought she’d get through this bit as well as she’d done in the past. We had been told she could be out of the Unit in as little as 4 weeks.

The Unit at The Royal Liverpool Hospital is made up of 8 isolation units. These consist of an ante-chamber where staff and visitors need to gown up and go through hand-cleaning procedures before entering the patients room. Each room has its own bathroom which is only to be used by the patient and the rooms are all equipped with televisions.

But the rooms are small, big enough for the bed, a chair and a cupboard – and patients are confined to this space until they are no longer neutropenic (neotropenia is an abnormally low number of neutrophils. Neutrophils usually make up 60 to 70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening and deadly). In a further move to protect patients, visitors are limited to close family only. The unit is a High Dependency Unit so works on a ratio of 1 staff member per two patients.

The unit also contains a kitchen where food can be prepared separately for the patients and a freezer where patients can have their own food stored.

As Candice’s family and friends we have nothing but praise for this Unit and their dedicated staff.

Unfortunately, Candice’s progress after the transplant took a turn for the worse. We had been told to expect the ulcerated digestive system which stopped her eating and caused her a lot of pain, we even expected the skin reactions that showed she had Graft Versus Host Disease (GVHD is a common complication following a stem cell or bone marrow transplant. Immune cells (white blood cells) in the tissue (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells). A certain amount of GVHD is a good thing as it shows the grafted cells are working and will destroy any cancerous cells.

However, in some cases the grafted cells become too strong and will attack healthy cells. In Candice’s case it was attacking the lining of her stomach and bowel, causing extreme pain and almost constant diarrhea but even more worryingly, it was attacking her liver and kidneys sending her into liver failure.

July and August 2010

On 23rd July Candice’s Consultants called us in to say that she was very close to dying and they were going to try a last ditch attempt with an experimental drug ATG (one used commonly in kidney transplants but experimental in the treatment of GVHD) to dampen the effects of the GVHD. The course of treatment would last 10 days and if she didn’t respond she would go into full liver failure and we would lose her. We took the decision at that stage not to tell Candice just how ill she was and to carry on with our belief that she would fight this and that we would be taking her home but things looked very bleak at this point. Candice was being fed intravenously, was on gas and air to deal with the pain, on fluids to keep her kidneys flushed, on diuretics to help with the bloating caused by the liver and kidney problems and generally not in a very good state at all. But she still managed to order birthday presents and a birthday cake for me so that we could celebrate my birthday together in the hospital. It was a reminder to me of the strength of the love and bond between us, and one that I will be forever grateful for. It was though a very bleak day for me – having to be happy and positive and knowing the axe that hung over our heads.

Thankfully soon after this Candice turned a corner – the ATG worked, her pain lessened and she was out of immediate danger. Our thoughts then turned to getting Candice home but we had to wait for her to get her strength back and for her neutrophils to increase enough for it to be safe for her to leave isolation. To keep her mind occupied Candice started reorganising her bedroom, she decided on a colour scheme and she bought new bedroom furniture and bed linen online.

On Thursday 26th August we finally managed to get Candice home with enough drugs (32 tablets a day at first) to make her rattle and a schedule of hospital visits that would dominate the next 6 months. This was an incredibly lonely time for Candice, she couldn’t go out, she was in constant pain and/or discomfort, she was constantly tired, struggled to get her appetite back (it was a struggle to get even 500 calories a day into her) and just didn’t have the energy to deal with visitors.

At this point I left work and became her constant companion and carer. It was a bitter pill for my previously fiercely independent daughter to have to be so dependent on someone again and together with the pain and tiredness made her very depressed. Her life revolved around 3 – 4 hospital visits a week, blood transfusions, drugs, and the inevitable readmission to treat infections. No matter how good your home and personal hygiene, it is impossible to stop immuno-suppressed people from getting infections.

September to December 2010

September and October were a slow march to Candice getting slightly better – baby steps we called it. However, on 31st October Candice once again had developed a slight temperature and seemed to be breathing more rapidly than usual. After consultation with the Bone Marrow Transplant Unit we took her back to The Royal Liverpool Hospital where she was admitted and started on antibiotics. By the following Friday they were talking about letting her home but over that weekend she deteriorated again and they found that she had fluid on her lungs. They inserted a drain to remove the fluid but in a couple of days things got a lot worse. During their usual checks it was discovered that Candice’s blood oxygen levels were much lower than normal. She was immediately put on oxygen but when this failed to improve the situation they decided to start a process called CPAP (Continuous Positive Airway Pressure) which is the use of continuous positive pressure to maintain a continuous level of positive airway pressure in a spontaneously breathing patient. CPAP can initially be delivered via a tight fitting facial mask and then if this doesn’t work, through the constant wearing of a hood which looks a bit like a plastic version of the old fashioned diver’s helmets.

Eventually a decision was made to take her down to the Intensive Therapy Unit and a couple of days later the decision was made to sedate Candice and put her on a ventilator to give her lungs time to recover. Unfortunately, the damage was too great and despite 6 weeks of our girl fighting every step of the way her body started to give up – the damage had just been too great and she was too weakened by the treatment. Even then, we refused to give up and admit the truth, that we were finally going to have to let her go.

Candice managed to make it through Christmas Day but took a final turn for the worse on Boxing Day. The next morning Candice lost consciousness. We had just enough time to gather her family and the people she loved most in the world to say their goodbyes before the machines that were keeping her alive were switched off.

Candice died at 2.45pm on Monday 27th December 2010.

We lost the centre of our world. A bright, beautiful, courageous and dearly loved girl who, like so many others, did not deserve the hand she was dealt and was gone from our lives too soon.

Angela Marincowitz
Proud Mother of Candice Lydia Nadine Colley