About this blog

This blog documents the story of our family after our daughter Yasmin was diagnosed with leukaemia when she was two years old, just six weeks after our son Isaac was born. Now, four, Yasmin finished all her treatment for acute lymphoblastic leukaemia (ALL) in October 2014 and she had her port out - marking the end of her treatment in February this year. The first post can be found here or you can read how my husband Andrew and I felt when we got the diagnosis and when Yasmin started the most intense phase of treatment. The main purpose of the blog is to raise awareness of childhood leukaemia and its impact on families and to raise money for the different charities that have supported us during the most difficult of times. We have helped to raise £33,000 for charity so far, including £30,000 for Great Ormond Street Children's Hospital where Yasmin is undergoing treatment and £2000 for Haven House hospice. This year Andrew and I will hike Ben Nevis for Children with Cancer. Anyone wishing to donate can do so at our fundraising page here. You can get more information on Facebook or you can follow me on Twitter here. The blog and our fundraising efforts regularly feature in national newspapers and magazines while the BBC has covered our fundraising here and ITV here.

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Saturday, 29 September 2012


The Parsons at the Olympic Stadium ( Pictures by Stefan Rousseau)
September 8  I applied for Olympics tickets when they first went on sale and was hugely disappointed not to get them. The complex sales process which had attracted a lot of criticism meant that I didn’t know anyone else who had managed to get any either. Given that my first trip abroad was to the 1980 Olympics in Russia - my prize for a painting competition in the Daily Mirror - and I now live five minutes from the London stadium at Stratford, this was intensely annoying. I had attended the Olympics at the age of six on the other side of the world but could not get tickets in my own city.
However, many friends secured tickets when they went back on sale, but by this time I was pregnant with Isaac. As he was due on the day of the Opening Ceremony we decided it would not be a good idea to go into labour at the Olympic Park.
Instead, we went for Paralympics tickets. With the Olympics mania that swept the country we got more and more excited about being able to take part and experience the atmosphere first hand. We encouraged Yasmin to wave a flag and cheer at the television as our Olympic heroes took gold after gold.
But when Yasmin was diagnosed with leukaemia, we assumed we wouldn’t be needing our tickets after all. Given that she was to be kept away from anyone with infections due to a lowered immune system, we thought that we would be warned not to attend any such events for some time. To our surprise, our consultant told us that as long as Yasmin was feeling well enough, we should carry on life as normal. It would do us good to go out and have fun, he advised.
Arriving at our seats in the magnificent stadium, we had only minutes to collect ourselves before Isaac started wailing and Yasmin threw a tantrum over wanting some toast.
“What have we done?” Andrew and I asked each other as we prepared for a stressful day and wondered where we were going to get toast from. But milk calmed one, while a toddler meal spaghetti pot assuaged the other and soon both babies were asleep on our laps and we were able to enjoy the athletics.
Friends working at the stadium invited us into the VIP section and we enjoyed a tour of the area where the Queen and Kate and William had sat. Yasmin perked up when she saw the food on display.
On our way back out through the park, we passed a musician surrounded by dancing toddlers, as though he were the Pied Piper. Although we didn’t discuss it, I know that Andrew and I were both thinking how that would usually be Yasmin, but still unable to walk and exhausted from her treatment, she remained in her buggy.
Yet, we had managed our first day out as a family of four. It was a gloriously sunny day and we were happy.

Thursday, 27 September 2012


Yasmin breaks fast after waking after operation
September 7  The increased appetite caused by the steroids kicked in over the next few days. Yasmin was desperately hungry all of the time but for specific items and if they weren't dished up immediately, she would throw a tantrum. Breakfast on her second day back was not two, not three, but four Weetabix! She started to wake at 3am demanding scrambled eggs or spaghetti. Andrew and I took it in turns to be chefs at the all night restaurant. When any food arrived Yasmin consumed it ravenously as though she had not eaten for days. It was like watching an addict getting their fix.
Although our daughter was now prone to huge tantrums she was also at times hyper and high and we started to get glimpses of the old Yasmin. Prior to her illness, she had always been cheerful and full of fun. I admired so much how her strength was shining through despite all that was going on.
My mood swings were as volatile as Yasmin's. Some days I felt that I couldn't cope and I found myself crying in inappropriate places, such as the supermarket. I'd always limited Yasmin's television viewing but since her illness and her inability to walk, she had watched massive amounts. The summer before we had spent all of our time in the garden but now she had become fearful of going outside. It depressed me that on the few beautiful sunny days we had had this summer my usually lively, bubbly, sociable girl, was stuck to the sofa watching bloody kid's television.
When friends posted on Facebook pictures of their children starting school and nursery, their cheeks rosy, glowing with health, it was hard. Yasmin had so much been looking forward to starting nursery.
But when Yasmin was cheerful so was I. We spent a lovely afternoon painting a card for daddy's birthday followed by the first trip to the park in months. Although I had to carry her to the swings while Isaac slept in his buggy, it felt good to be out.
One week following her discharge Yasmin had to return to Great Ormond Street for another bone marrow operation. She had to be starved because she would be under anesthetic but she woke at 4.30am with uncontrollable hunger.  We tried to ignore her cries but in the end Andrew had to take her for a drive through Epping Forest at 5am to settle her.
Yasmin was very distressed to find herself at the hospital again and started crying that she wanted to go home. She is old enough and switched on enough to know that painful things happen here and although she understands it is to make her better, it is difficult to explain why she has to come again and again.
However, what started as a horrendous day ended up being a positive one. On the ward, we met two other lovely families whose children were a few weeks ahead of Yasmin with their treatment. Their children had come off the steroids and they assured us that it would all get easier from now. It was good to talk to other families experiencing exactly the same things. We told ourselves that if we could get through the next six months – the most intense period of chemotherapy combined with the sleepless nights with a newborn - life thereafter would be a doddle.

Sunday, 23 September 2012


Yasmin singing to nursery rhymes
September 1 Walking back out along the brightly lit corridor that we had first stumbled down before the diagnosis was a surreal experience. Andrew and I couldn't quite believe that we were going home. It was still hard to digest the fact that our daughter had leukaemia. Everything had changed in an instant and we suddenly found ourselves living lives we could never have imagined. Instead of spending my maternity leave happily introducing our daughter to her new baby brother, we were living in a whirlwind of medical procedures, tests, operations and chemotherapy.
We had also learnt that the diagnosis had much wider implications for our lifestyle and future plans. Yasmin had been abroad five times before the age of two and Andrew and I had travelled and worked all over the world. But Yasmin would be unable to travel overseas for two and a half years which meant there would be no family holidays in the sun for a while.
Back at home, our cheerful daughter had disappeared to be replaced by a mini monster as the steroids she was on started to take their full effect.
The drugs, taken as an oral medicine for five weeks, worked in combination with the chemotherapy to kill the leukaemia cells.
The side effects included mood swings and increased appetite but could take a week to manifest.
As Yasmin had only recently turned two she was already in the tantrum phase and this was magnified by the steroids. Instead of being delighted to have my daughter home, I started to panic. I wondered how I was going to cope over the next few weeks at home with a new baby and a toddler on steroids and unable to walk, with Andrew back at work. I looked in despair at the fridge where I had stuck charts with times to give medicine and hospital appointments.
The first night home we attempted to get Yasmin to settle in her cot. Prior to the illness she had regularly slept for 12 hours undisturbed but since being sick she had managed to work her way back into our bed as she was often in so much pain we couldn't leave her to cry. We had recently bought her a Minnie Mouse toddler bed in order to tempt her back into her room but she also refused to go in that. As I was still breastfeeding Isaac and had him in with me at night, I ended up sleeping in our super king size bed with a child either side with Andrew relegated to the spare room.  I was absolutely shattered as I had been surviving on virtually no sleep for months but I was too stressed to fall asleep. When I eventually dropped off, I dreamt that I was drowning.

Wednesday, 19 September 2012


August 31 After a week in GOSH, Yasmin was fed up with hospitals and started to say she wanted to go home. We were allowed to take her outside for a walk in her buggy but she never wanted to go back in. She was fed up of being prodded and poked.
Two days before she was due to go home we had a long chat with our consultant who explained that we wouldn’t know how well Yasmin’s body was responding to the drugs until she had a Minimal Residual Disease (MRD) test on the 28th day of treatment. This would determine her treatment plan for the next two years. It meant that we had a further two weeks of uncertainty, not knowing which level of chemotherapy her little body would be subjected to.
Ten days after Yasmin’s first bone marrow operation, we were back on Safari Daycare, but, with our daughter now a cancer in-patient, we were far more subdued than the previous week. This time Yasmin was having a lumber puncture for chemotherapy to be injected directly into her spinal fluid.
On the walls were clippings from newspaper articles about ‘brave children battling cancer’. It made me think about the times I had written such stories as a news journalist, usually if a celebrity visited sick children somewhere or other. Now our daughter was one of those children I found that I was irritated by the language. Newspaper articles, by their brevity, must reduce everything to the barest facts. I did not want our daughter to be reduced to her illness. Despite her paleness, loss of appetite and the terrible pain she had been in, we did not think of our daughter as a seriously ill child. To us, she was just our beautiful girl who happened to be seriously ill.
Yasmin coming around from anaesthetic
The nurse came to call us as soon as Yasmin started to come around from the anaesthetic. She was rolling around on the bed like a drunk after a night on the tiles and started to throw a tantrum because, after being starved since the night before, she was desperate for toast.
Back in the room, one of the nurses came to bring a shared care pack – a huge folder with all of the information that we would need to care for Yasmin at home, including what to do if she had febrile neutropenia and how to understand her blood test results.
It was completely overwhelming.
As soon as we had had the leukaemia diagnosis, we had been enveloped in the most incredible care from the team at GOSH – from the doctors, nurses, consultants, social workers, physiotherapists, the oncology outreach team and even an Imam who came to our room believing we might be Muslim because of Yasmin’s name. Every member of staff we encountered was warm, caring and completely professional. They had helped hundreds of families following a cancer diagnosis and they were there to guide us through it all.
We had been living in a bubble with little knowledge of what was going on outside, our lives revolving around Yasmin’s care, trying to keep her as cheerful as possible.
Now, we were to be thrust out into the world with a plastic bag stuffed with Yasmin’s medicines, syringes and Tempadot thermometers and a confusing treatment diary marked with hospital appointments. After 18 nights spent on a cramped hospital bed, Andrew was also desperate to get out. I wanted them both home but I was also nervous about our ability to keep Yasmin safe and well.

Sunday, 16 September 2012


Despite all of the medical procedures, Yasmin enjoyed her first few days at GOSH. She had always been very sociable and was easily bored at home. Here she had a steady stream of visitors – grandparents, uncles, friends – all bearing gifts, and there was always something going on in the playroom with the play specialists, volunteers and the other children.
On August Bank Holiday, Andrew wished to get out for a few hours so I came in to take over. As we didn’t have any visitors that day and Yasmin was now allowed off the ward, we went downstairs to the cafeteria where there was a monitor on the wall showing clips from Disney videos.
I was relieved as that morning the doctor had managed to successfully insert a cannula into Yasmin’s foot for her blood tests. The previous day and night they had been having problems drawing blood from the veins in her hands, adding to the distress of ‘having my bloods’.
But when we got back to Yasmin’s room, her doctor informed me they would have to do the blood tests again as her levels of potassium were high. He explained that this can sometimes happen when the leukaemia breaks down. Another blood test ensued with more trauma for Yasmin but this also showed high levels. I asked what this meant and what the danger was and the doctor calmly explained that it can cause the heart to stop beating although he quickly added that medicine was given to prevent this from happening.
He repeated the blood tests again but this time drew it directly into a vial rather than using the cannula. He said it was possible the blood in the cannula was giving a false result as if it is shaken even slightly it can alter the reading.
While waiting for the results of the third blood tests, my immediate thought was: ‘Well, of course her heart won’t stop beating. There’s no need to worry.’
My second thought was: ‘Well, we never imagined she would get leukaemia. Children’s hearts do stop beating and it could happen to us.’
I imagined a scene I have watched on various television dramas - a heart monitor stopping and medical staff rushing in to try and get the heart going again but this time it was Yasmin they were hoping to save.
Was this going to be our lives now - living in a state of constant fear?
I texted Andrew to call him back in early but didn’t explain why. Five minutes after he got back, the blood tests came back negative. It had been a false alarm.

Friday, 14 September 2012


August 25  
I went to sleep crying and woke to my beautiful bonny boy chuckling away. I was relieved that despite all the pain and unhappiness of our daughter's illness it was still possible to experience the moments of pure joy that only a new baby can bring. Isaac was seven weeks old and his tentative shy first smiles were turning into those toothless chuckles and coos that make all parents swoon with delight. I am determined that this illness will not destroy all of the pleasure of Isaac's first few months. 

I left Isaac at home with the Grannies and got the tube into Central London so that I could be back in time for Yasmin's first chemotherapy. Before Yasmin's diagnosis, Andrew and I knew nothing about leukaemia and very little about chemotherapy except that it made you lose your hair and it didn't always work. Andrew had a vision of Yasmin having to sit in big machines.
But now we were both required immediately to become experts in cancer care.
Yasmin would have most of her chemotherapy as an oral drug at home. But at the start, for the first five weeks, her chemotherapy, Vincristine, would be administered through a cannula into her veins.
Over the previous six weeks, Yasmin had had numerous cannulas inserted into the tiny veins in her hands and feet. And due to several bad experiences in outpatients at our local hospital where blood was taken from her arm with no anaesthetic cream or spray, she had a horror of such procedures, making inserting a cannula a terrifying experience.
This was a major problem as over the first few days of treatment Yasmin would have blood tests every eight hours at times. The second any medical staff entered her room, she would shout ‘Not having my bloods!’ She would tremble as the procedure was carried out.
For her first chemotherapy she sat on my knee and I cuddled her tight. She had developed her own coping mechanisms that were heartbreaking to watch. Clutching her favourite toy bunny, she held him in front of her face repeating 'Need look at Rabbie.’
The chemo silently entered Yasmin’s body. It was all over in minutes.
As it was important for Yasmin’s fluid intake and outtake to be monitored to ensure the drugs were being flushed through her system, Andrew and I had to take a note of everything that Yasmin drank and encourage her to drink 1000 ml a day. Equally, all of her nappies and the contents of her potty had to be weighed by the nurses. It thus became normal to say ‘hello’ to parents in the corridor walking around with cardboard containers of their children’s urine. 

Wednesday, 12 September 2012


August 24 Yasmin was to stay in GOSH for ten days having intensive treatment with chemotherapy, steroids, antibiotics to ward against pneumonia due to her lowered immune system, medicine for constipation caused by the other meds, along with constant blood tests to monitor her little body's reaction to all of this.
After the first night, only one parent was allowed to stay over. Initially, Andrew and I had planned to alternate but in the end we decided it would be better for the four of us if I went home to continue breast feeding Isaac at night while Andrew did the night shift at the hospital. I would commute in every day. I suspect Andrew was just trying to get out of the night feeds.
Yasmin and Winnie have their blood pressure taken
The first evening I got home around 10pm and rushed in to cuddle my little boy. He was being looked after by his two grandmothers who we had christened the Two Grannies after the Two Ronnies. My mother had  recovered from her earlier exhaustion and was staying with us while Yasmin was at GOSH.  Isaac seemed no worse off for my absence and had taken to the bottle without any problems.
The next day we all went back in so that Yasmin could spend time with her brother and grandmothers. Yasmin enjoyed the attention while Isaac stretched out, kicking his legs on his big sister's bed. It was soon time for Yasmin to take her first round of three medicines which she took through three syringes lined up like shots.
After remaining cheerful all day for my daughter, I broke down that night in bed. I was completely exhausted as I had not had more than a few hours sleep a night for two months. The strain of  prentending everything was fine for Yasmin and making it all into a game had taken its toll.
Despite not wishing to succumb to self-pity and thinking always that there were people around the world in worse situations, that night I was angry, shattered, and wanted to scream: 'Why us? Why is this happening to our little girl?' It was so unfair.

Tuesday, 11 September 2012


August 23
Yasmin loved the party and cheered up meeting the other children and seeing all of the toys. After a week in our local hospital, she was happy to be somewhere different, making new friends.
After the initial shock off the environment died down, I was surprised to note that this was a happy place, full of laughter. It didn't take long to see past the illness to the children and their personalities shone out.
 Our consultant came to speak to us and his words immediately put Andrew and I at ease. He told us that the kind of leukaemia that Yasmin has (acute lymphoblastic leukaemia - ALL) was the most curable with survival rates of above 90%. He explained that at present there were no known causes of leukaemia, it was not genetic, it was not likely that Isaac would also get it and there was nothing we could have done to stop it happening to Yasmin. It was just incredibly bad luck.
Yasmin taking her first steroids
There was a specific two-year course of treatment that had been proven to work and although the first six months of chemotherapy would be intense, for the following 18 months of treatment Yasmin would be able to lead a normal life. She would be able to start nursery and even to go swimming. Most importantly, he told us that Yasmin would no longer be in pain. The steroids and chemotherapy that she would start almost immediately would begin to kill the leukaemia lurking in her bone marrow and she would be a well child. The majority of her treatment would take place at home with Andrew and I administering oral chemotherapy.
We were grateful that Yasmin would be cared for at GOSH, surely the best place in the world to be right now. After seven weeks in and out of our local hospital it seemed like the Ritz and we had complete confidence in our consultant.
The dark thoughts I had had when leukaemia had been first mentioned were pushed aside. 

Monday, 10 September 2012


Yasmin waiting for her bone marrow test
August 23
Andrew and I held each other while looking down at our precious daughter who had finally fallen asleep on her hospital bed. She looked so peaceful lying there. It was only when she was asleep that she was not in pain. It was just so incredibly unfair. Why had this happened to her?  She was just a little girl, who months earlier had loved to dance and run around the park, who was always laughing.
Pulling himself together, Andrew went out of the room to call his parents and friends with the news while I started googling survival rates and details of treatment for ALL until I scared myself.

Andrew had taken the diagnosis very badly. He said he felt like he had been punched in the stomach. Due to Isaac's early arrival, it was Andrew who had repeatedly carried Yasmin, sweating and writhing in agony, to A and E and it was Andrew who had stayed seven nights with her at the hospital, trying to distract her with Peppa Pig magazines and children's television and cuddling her to sleep.

Although he had done everything he possibly could, he still felt guilty that he had been unable to get a diagnosis earlier and Yasmin had been left to suffer so much pain.

I was remarkably calm in the first hour following diagnosis but anger set in a short while later. Although I knew that all the medical staff we had dealt with had been doing their best, I was furious that Yasmin had not been sent for her bone marrow operation when her blood tests first showed abnormalities. Andrew and I both worried that this lost month would have given the cancer time to spread.

I don't know how we managed it - probably through pure exhaustion after surviving on two or three hours sleep a night for weeks - but we both passed out at around 3am huddled together in the single parent bed in Yasmin's room.

The following day, Yasmin’s nurse mentioned that a birthday party was taking place in the playroom. Thinking that it would cheer Yasmin up, we braced ourselves and headed in to find a one-year-old with the loveliest smile celebrating his first birthday as an in-patient with bone cancer. His parents, his three lively sisters and a number of other patients, some attached to drips and monitors, others with no hair, were all in attendance.

Just a day before we had been thinking everything would be fine, and now, here we were taking part in the activities on a children's cancer ward.

Thursday, 6 September 2012


It was with a mixture of relief and trepidation that we arrived at the world famous Great Ormond Street Hospital (GOSH). It was a strange sensation, after watching GOSH being showcased at the opening ceremony of the Olympic Games just weeks earlier, to be there because of our own child. We were relieved that we would be getting some answers after seven weeks of worrying about Yasmin but also apprehensive about what we would learn.

I must confess that I had been one of those parents unable to watch television programmes featuring sick children as I couldn’t bear the thoughts of it happening to us. I have previously remarked to Andrew: “How on earth do people cope looking after a sick child? It must be one of the worse things that can happen in life.”
Entering Safari outpatients and catching glimpses of pale, bald, children sat on beds behind curtains, tears came to my eyes as the reality of the environment hit me. But this would not be our child.
After a detailed description of Yasmin’s illness to the oncology consultants and an analysis of her confusing blood results (one week they appeared normal, then showed abnormalities the following week only to return to normal again) they seemed confident that it would not be leukaemia but was more likely arthritis. However, they did stress that we would know nothing for sure until the bone marrow operation.
Waiting for a taxi home
The following day we were transported by taxi bleary-eyed at 7am from our local hospital to GOSH. Before assigning Yasmin a bed, nursing staff had to carry out the routine observations, blood pressure and temperature that had become a regular part of her life already. The nursing staff kept pointing to their chests saying: “Do you have a line?” The last time I'd heard such a phrase was in a nightclub. We had no idea what they were on about but were certain Yasmin didn't have one.
Sat waiting with other families whose children most likely had cancer and were there for treatment, Andrew and I found ourselves laughing and joking. I’m not sure whether we were aiming to relieve the tension for ourselves but at that point we had convinced ourselves we would be sent home with nothing seriously wrong.
The start of the operation was not so pleasant. Yasmin was given gas through a mask and she struggled as the anesthetist put it over her face. Distressed, and saying “it’s smelly”, she resisted.
Having a treat while waiting for news
But she was soon asleep. The operation was quick and after a few hours recovery time we were sent back to our local hospital. We noted all the other families had stayed so this was proof to us that Yasmin was safe.
Happily giving an account of what had happened to the registrar of our local hospital’s children ward an hour later, Andrew received the phone
call from the consultant with the results.
“I’m really sorry to do this and I know we discharged you, but we have actually found something and we need you to come back and Yasmin will be admitted. We are still doing further tests and will know more later on.”
Sick with fear, we went home to get our things together.  Isaac was being cared for by both of his grandmothers while we went back and to to GOSH so we told them it looked like something was seriously wrong and we would have to leave him overnight. I was torn at leaving Isaac for the first time all night long, particularly as he was being breastfed, but I knew I had to stay with Yasmin and Andrew at the hospital that night.
We arrived back at GOSH at 7pm with instructions to go to Elephant Ward. Arriving at the ward in a daze we found the nurses were not expecting us and we wondered if a mistake had been made.
“Where are we?” Andrew asked and then we both noticed a sign with the words Cancer clearly in the middle.
Suddenly, a nurse appeared asking whether we were with Yasmin Parsons. She showed us to our room and told us a consultant would be along soon.
“What’s going on? What do you think is wrong?” I said to Andrew.
“Well, we’re on a cancer ward,” he said, as realisation set in. “How on earth did we end up on a cancer ward?”
The consultant who had seen us the day before came to talk to us once more with a very sad expression on her face.  She hit us with the words:
“What I am going to tell you right now is going to be life-changing. Yasmin has leukaemia. She has what is known as acute lymphoblastic leukaemia.”
Everything else she said became a blur as we both went into shock. Andrew asked her about recovery rates and she said more than 50%.

Sunday, 2 September 2012


On July 8, in the midst of the chaos our lives had become since the start of Yasmin's illness, our baby boy was born.

My mother had come to visit for the weekend of Yasmin's birthday but ended up staying for two weeks to help me out when she saw how sick our daughter was. On Saturday July 7, I paid for her to have a relaxing day at my gym as a treat following a difficult week - but it had the reverse effect. When we went to pick her up I found her surrounded by staff as a paramedic administered first aid. Everything had got too much and she was having  a panic attack from having overdone it.
I'm not sure if the prospect of both my daughter and mother being hospitalised at the same time set me off but a few hours later I went into labour - three weeks early.

It was six days after Yasmin had first been discharged from hospital and she was still in terrible pain and calling out for me. Andrew took her downstairs to try and get her to settle so that I could labour away undisturbed in our bedroom listening to my natal hypnotherapy CDs.

Severe contractions kicked in at 3am and at 4am my waters broke. I tried for about ten minutes to get Andrew's attention by calling quietly so as not to wake Yasmin. We managed to get out of the door by 4.15am and drove frantically to the hospital fearing the baby would be born in the car. Andrew came to a screeching halt Sweeney-style in front of the maternity entrance at 4.22am. I just about managed to make it to my delivery room and Isaac was born at 4.44am without any pain relief and just as the midwife was turning on the taps for my water birth.

Andrew and I spent a few precious hours with our son before Andrew drove home to pick Yasmin up to meet her baby brother. She was delighted to see him but still very poorly and as we were already 'in the area' and well known by hospital staff by then, Andrew took her back up to A and E for further assessments so we had one child on maternity and one on children's ward.