Posted on Wednesday 2 September 2020
Sumayyah’s story: ‘All I could do was just cry all the time, I remember Sumayyah was wiping my tears’
On Sunday 6th September, Sumayyah will celebrate the first anniversary of her life-saving stem cell transplant, donated by her Mum, Amira.
Sumayyah, 3, was first diagnosed with leukaemia in August 2018 at 18 months old. She stayed in Great Ormond Street Hospital for six months of chemotherapy treatment before going home in January 2019. However, only five months later, Sumayyah relapsed and was back in hospital. She needed a stem cell transplant but, after weeks of searching the register, they could not find a 100% match so her Mum, Amira, instead donated as a 50% match.
Earlier this year, Sumayyah was admitted to hospital again after her Mum found her unresponsive, suffering with seizures. They spent the majority of lockdown – March to May – at Great Ormond Street Hospital without any visitors. Despite all of the struggles Sumayyah has been through, she is a positive ray of light and is looking forward to celebrating her transplant anniversary this month.
“She started feeling unwell in July, it started with tonsillitis and a fever. She wasn’t eating well. I went to the GP and he checked her and said it’s a minor case of tonsillitis and she’ll get better with a week’s course of antibiotics. After that I went home, finished the course of antibiotics and the fever didn’t go away. I was trying to get her to eat and drink, when she was ill with the tonsillitis everything stopped. They gave regular paracetamol and ibuprofen – I thought maybe there’s some improvement and things will get better. I went back after the course of antibiotics and they said maybe it’s viral, just give it some time and continue with the paracetamol. It was puzzling, she was 18 months.
“You don’t want to think of the worst, so I thought give it some time. From then, I went home and they said give it three weeks to get better and they said fever is a good symptom as the body is fighting something but she kept losing weight and she was always tired, she couldn’t eat as she had mouth sores and she didn’t want to be feeding. I had to do housework and look after her single-handedly, she was crying, she’d be too tired.
“My heart kept telling me something’s not right and I just felt uneasy. I kept going back and forth, I felt at this point that I wasn’t being heard, I wasn’t being taken seriously. I knew something was wrong with my child. I talked to my GP and I told him I was going to the A&E all the time and no one was taking me seriously and I was coming back with the same advice. It had been a month by now from July, it was August. I think he had a hint by this point, he said you must go back as soon as possible and I asked him to refer me, so I would be taken seriously because I was tired of hearing the same things over and over again. Nobody did a blood test to check what was going on, it was a month of fevers.
“I went there to the hospital in A&E and finally bloods were done and they said ‘why is she so little? Why has she lost so much weight?’ and I said I’ve been trying to explain she’s been losing weight and she has not been eating and she has been so poorly. They were the tests she needed. The doctor finally came in and said they wanted to do some blood tests and keep her overnight and just make sure that she fights the fever. We stayed overnight and then the following day we were waiting for blood results but the bloods clotted so they had to re-do the bloods. Then, it was the night of the 23rd of August, late at night when she was asleep, the team came and told me ‘I want to talk to you in private’.
“I thought they just didn’t want to talk in front of other parents because we were in a mixed ward. I still hadn’t thought it, that they could have horrible news for me. Everybody sat there I noticed a table, there was water and a box of tissues and everybody was looking at me, I just couldn’t think what was going on but I knew this wasn’t going to be good news. And then the doctor looks at me and tells me ‘your daughter has leukaemia’ and that’s when everything fell apart.
“I remember the event so vividly, it was a life-changing moment for me. Sumayyah was in my arms, I kept crying saying ‘no this is not happening’. All these questions and denial and everything at once.
“They said we need to transfer you to Great Ormond Street Hospital right away, they have a bed. It was 9-10o’clock, we reached Great Ormond Street at 2am on the 25th of August. It had been a very long day, from the point we went on Thursday. They had to admit her and give the history to Great Ormond Street and explain what was going on.
“The next morning she had to go to theatre. Everything was all at once, there was so much information at one period of time. She was so critical at this point of diagnosis, she was very anaemic, had lost a lot of weight, she had a high count, high level of blood. They said they needed to do a biopsy to find out what type of leukaemia it is but it looks like AML from the microscopic view. You need to have a hickman line, you need to have a blood transfusion – everything had to happen then and there, it was too much information to grasp all at once.
“All I could do was just cry all the time, I remember Sumayyah was wiping my tears, she was frightened as well ‘why is my mummy crying?’ she was 19 months old and she was wiping my tears. And then it hit me that I need to calm down a bit, I didn’t realise all my emotions was hurting her to see me in that state, she’s already ill so I just tried to take it one step at a time. In the morning I had a few hours, I took a shower and refreshed myself and thought ok, this is it, I need to hold it together, to come around to terms with it.
“She went to theatre and I was told she might need to go to the ICU because she had too much inflammation in her throat, they would have to put her in an incubator as she had difficulty breathing.
“The weekend passed and on the Monday I met the full team and I met Maria from CLIC Sargent, she came and spoke to me with the doctors. They said ‘we’re here with you, you’re not alone’ they said it will come to you by surprise that they can fight it, you need to be strong for your child. They offered a lot of support, she told me she was going to be there for me throughout the journey.
“Maria would come every Friday and check on us, she would offer me vouchers and financial support so I wouldn’t have to worry about food. I could easily access food so that was not something that I needed to worry about now. She showed me how to make an application for an allowance, and an application for the family fund – and things she would take on board so we could worry about the bigger things, we didn’t have to worry about minor things. She would come up and check on us, giving me her point of view because she’d seen families go through this for years, it was reassuring to me to know that we can cross the bridge and it can be crossed.
“Sumayyah had to stay in the first time for six months because she was so poorly, she came in with a really low body weight – they wanted to do tests for any underlying causes for her leukaemia and re-establish her nutrition. They thought it was best to stay in hospital. For six months we were living in the hospital. The CLIC Sargent social team helped me to meet other parents to get their experiences like a support group, with the addition of CLIC Sargent social workers giving their experiences. It was a good chance to share and have a cup of tea, it was therapeutic. I would look forward to that.
“Sumayyah had four cycles of chemotherapy, each cycle lasted for a month or a month and a half so overall it took six months. For the next cycle you needed counts to recover to be able to continue to go to the next one so overall she had four cycles of chemo over the duration of six months.
“Then my daughter was discharged in January 2019, she was in remission finally after six months. Even after we went home I remember CLIC Sargent did offer us support, Maria was desperate to offer me financial support for basic things. Leaving hospital was hard as we had been in hospital so long and you get an attachment. The support that continued at home was really helpful to adjust to the new life after the cancer diagnosis.
“We were home trying to live a normal life and five months later Sumayyah relapsed and was taken back into the hospital. It was a big shock. I knew Maria was no longer there as before she left she sent me a goodbye email as she was retiring. When we went back in the hospital I met Adama, she was my new social worker. She gave me support through this journey again.
“Adama was someone I could talk to and relate to and she would hear me out if I wanted to just blow off some steam. It was difficult as this time Sumayyah needed a transplant. My Mum had to come from Tanzania to assist me for my daughter’s transplant because I was told it would be a few months and she would be in isolation and so I needed extra support. They helped me with supporting letters and with them I managed to do a visa application for my mother and she came from Tanzania.
“It was such a short time for us to find a donor – the chances were better with an unrelated donor but they tried looking on the register all round the world but it was unsuccessful and I was her next best match. I was happy to donate. I was a 50% match but they said they had done it before and they were happy enough that I was a suitable option for her. It was going to be in August last year but then she got an infection, then the infection cleared and finally she got it in September.
“She went in on August 29th and she was discharged on 1st November to come home after the transplant. Then we went back again on the 7th because she had a problem with feeding. Nutrition was a problem for her, she had a tube which kept coming out and she vomited so finally we opted for a gastrostomy. She had an operation on her stomach and they discharged her on the 11th. Things were going well but she started to feel unwell a few days later and we were back in hospital November 21st. She had lost weight all over again, she was vomiting, not tolerating anything and she was really poorly once again and they did a lot of tests to find out she had a side effect of the transplant; graft versus host disease.
“She needed steroids for that – so she’s been on steroids from November up to March. In March the steroids had a lot of side effects on her. She was having seizures and she was unresponsive. I called the ambulance, we rushed her in and they tried to resuscitate her. That was the worst ever I have seen her.
“We were back in hospital for a long time from March up to end of May for the lockdown period. It was just me and her, no visitors, my Mum was alone at home she wasn’t allowed to come and visit me. In that time during lockdown from March to May, it was one of the most intensive things we have gone through with everything – nobody to talk to, the social interaction with other parents was limited because the kitchen had only one person in and out so we had no one to talk to, you couldn’t meet other parents easily and communicate, it was a vulnerable time.
“After Sumayyah’s March incident when she had a seizure in the middle of the night, I had post-traumatic stress disorder, I kept replaying the images in my mind, the events that happened and if there was any way I could have prevented it. I felt like I nearly lost her. I needed to talk to someone. I spoke to Adama over the phone, and a psychologist over the phone and it really helped, speaking to someone about it makes a difference.
“Several months later, now Sumayyah is doing well. We’ve had hiccups and ups and downs in the journey, especially during the time of the coronavirus and the lockdown. With isolation we didn’t know what was going to happen and CLIC Sargent did all they could to help in a difficult time. We are really grateful for everything they have done for us. Sumayyah is home now and she is happy and I wouldn’t have been able to do this on my own.
“She’s thankful she gets to see her Grandma and spend time with her and I get a break too. She loves her so much, Grandma jokes with her ‘I’m leaving now’ and she says ‘no, you’re not leaving’ it’s going to be really hard for Sumayyah when she has to really go.”