Posted on Friday 18 September 2020
Sarah’s story: ‘I thought that’s not a good sign it was exactly like the first time’
Sarah, 6, was first diagnosed with myeloid leukaemia in August 2018 after suffering with a bad cough and joint pains for months. She was diagnosed during a family holiday to Romania, where she had her first round of treatment before flying home to Bristol Hospital.
After over a year in remission, Sarah started coughing again earlier this year. Her Mum, Simona, feared the worst so asked for her bloods to be done. Just before lockdown, Sarah’s family were told her cancer had returned and she needed a transplant. She later received a life-saving transplant from her brother, David, in May.
They are now continuing to shield until May 2021, a year on from the date of her transplant. They have to travel from their home in Cornwall to the hospital in Bristol twice a week now for check-ups so are staying in CLIC House, which they refer to as their second home.
Sarah’s family are sharing their story this Childhood Cancer Awareness Month to shine a light on the experiences young cancer patients and their families have had over the last few months.
“It was 2018 in April when she started coughing quite bad, the cough wouldn’t go with anything. I was going back and forth to the GP and they gave her lots of inhalers I tried that didn’t help, I asked for more from my GP eventually he sent her for a X-ray it came back after a week or two. I had to ask if they found anything, the GP said she had a scar in the middle of her lungs but it’s nothing to worry about because it could be from untreated asthma. I said she’s only three and a half I wasn’t happy with the answer so I asked for more investigations.
“During this time whilst I was waiting for the GP to refer her for more investigations she was starting nursery full time, she was acting as a perfectly healthy child except some episodes of fever at night. I was giving her calpol, she was fine with that. Then once in a while she was complaining of pain in her joints especially in her waist, I knew she hadn’t had a fall and when the nurse asked if she had a fall we said no.
“I took her to minor injury for an x-ray and they saw nothing – I thought maybe she was playing up. Again, I gave her calpol and she was fine. A week later she started limping, complaining of pain in her ankle. Again, I gave her calpol and she was fine. I asked the GP to do her referral in May and he said as it’s not urgent the waiting list is ten weeks. In June all this time from April, she was coughing, that was my main concern. She was coughing so bad she couldn’t sleep day or night. At the main hospital here in Plymouth I asked them to put forward the appointment, they said they can’t do that because it’s not urgent on the referral, you have to ask the GP. I rang the GP he was on holiday so eventually I gave up.
“We were going to Romania for holiday in august, I thought I will make an appointment there and she will be seen by a doctor there. Until August nothing happened here from April other than that chest X-Ray.
“On 6th august we went to Romania, we were in the car for two days and two nights. We went to Romania, we had been for a week at the seaside, coming back from the seaside on the Thursday, Friday I had an appointment. I took her to the doctors and straight away they asked for bloods to be done. In the next half an hour went to another clinic, did her bloods and after four or five hours the clinic called me and said come and get the results and take her to hospital.
“I thought they had made a mistake, eventually I went and I got the results from there and in the same time my husband had an appointment for an endoscopy when he finished his doctor prescribed him something and I showed that doctor Sarah’s results and she looked at me and she said ‘Madam, your priority is your child’ so then I started worrying.
“We repeated in the same evening in the hospital this time and the bloods were as bad as the previous ones. So the next day we rushed to the main hospital in Bucharest in the capital and they admitted her in the infections hospital because she was coughing. From Saturday until Wednesday we stayed there and she had her bloods done and eventually on that Wednesday they clarified it was myeloid leukaemia. Next day we were transferred to the haematology hospital in Bucharest on Thursday and straight away they started all sorts of treatment and on the Saturday they started chemotherapy because she was so ill that she could have died, if she was bleeding, she could have died instantly because her HB was five which was deadly.
“They started the chemotherapy in Romania and then I told the doctor we live in the UK for the last fifteen years, our life is here – my husband had to go to work, my son had to go to school. I asked the doctors in Romania just to stabilise her and then send us back here.
“So for Myeloid leukaemia the treatment takes around six months, with four courses of chemotherapy, intense chemotherapy within a very short time. So we did the first course of chemotherapy in Romania and when she was stable enough we travelled to Bristol, I already organised and I got in touch with the doctors – they gave me the details of the doctors in Bristol and I was talking to them and informing them of what happened so they were waiting for us to come back.
“From the airport me and Sarah stopped in Bristol on 2nd October and from October until end of December we finished the treatment and she had her line removed, she was in remission. Everything was fine we were discharged home and we started a new life, as everyone does. I started going back to work, Sarah going to school because now she was in Year One.
“Last year was absolutely fine until beginning of February this year. We were going for check-ups every month and every two and three months I was asking for blood tests because they don’t do it routinely so just for my peace of mind. All the time they were fine until 4th of February, beginning of February she started coughing again.
“I asked for bloods and they were a bit low for my point of view but they said no it’s nothing to worry and then her cough again got worse and worse, and I thought that’s not a good sign it was exactly like the first time. I asked for bloods again two weeks later and it came back quite bad so the leukaemia relapsed, and then again I got in touch with doctors from Bristol and the next day we went there.
“On 27th February we were admitted for five weeks and she had chemotherapy to cure the cancer again, they sent us back home for four weeks because she needed to recover and in this time we needed to sort out a bone marrow transplant, it was my son, we knew he was a match because we did the test in Romania, they also tested him here.
“So, in this four weeks we travelled to Bristol to do the bone marrow aspiration from David and for Sarah to have more investigations done and have eight teeth removed because there can be complications during the transplant. Then on 28th April we were readmitted to start the induction period for the transplant. It’s more chemo and more treatment to destroy her immune system so it would be accepted by her body.
“So on the 1st May she had the transplant, she’s had some complications but not as bad as I expected, the transplant was successful– the bone marrow is her brothers and is working 100%. We are still admitted in Bristol but from last week they start allowing us to come home in Cornwall in between visits, we have to be there every Sunday and Thursday but we always travel to CLIC House the night before, so we can be there in the morning.
“It was perfect, safe, Ann was doing everything – we had everything we needed there, it’s a nice place and even now with covid with all the measures it allows me to feel safe enough to be there. Now for one year I can’t go to work and the kids can’t go to school we have to be indoors for one year until next may. One year from the transplant day.
“It was dramatic [due to the pandemic] especially for Sarah but nothing compared to first time she was always in her room, she could never get out, she could never go to school she couldn’t have any activities, or people coming in to spend time it was only me and her.
“When her dad was visiting I had to go outside, we were allowed together, me and my husband, with her only on the transplant day. I understand the reasons and I agree with everything as it was all for her safety and I wouldn’t do anything else differently but it wasn’t very pleasant. I can’t complain – she was complaining but I wasn’t. They don’t see the risks but we know. My husband used to come to us twice a week because she won’t live without her father, he’d have to travel often from Cornwall to Bristol, at least twice a week.”
Sarah and her family are sharing their story today for Childhood Cancer Awareness Month to shine a light on what the last few months have been like for young people with cancer and their families.