Posted on Wednesday 23 February 2022

Dulcie’s story: “I just kept thinking how has this happened to my daughter?”

“I just kept thinking how has this happened to my daughter?”

“You hear about this happening to children and you think it is terrible but you never think you are ever going to be in that position.”

Five-year-old Dulcie’s stomach was so swollen her mother Debbie had to buy her new clothes.

Yet doctors repeatedly said the schoolgirl was suffering from constipation and continued to up her dosage of laxatives.

It was months before the family received the devastating diagnosis of stage 4 neuroblastoma.

Here, Debbie shares their story…

“When we look back at photos now, Dulcie’s stomach was so swollen at the back end of 2020,” said Debbie.

“In January 2021 she began complaining of abdominal pains and was a bit constipated.

“We took her to the doctors and they said it was impacted faecal matter and prescribed Movicol. The pain went and the swelling eased a little bit.

“But me and my husband noticed soon after that Dulcie’s tummy was getting bigger and bigger.

“I remember thinking to myself, maybe she just likes her food so much and she’s a big eater. I booked her in to my local running club. I am a runner too and I thought running would also help with her asthma so thought it would be double benefits for her.

“We got to about September time  and I noticed her tummy was getting bigger and we had to start buying a bigger sized top to cover her expanding belly.”

The family were unable to get a face-to-face appointment until her parents and the school flagged Dulcie’s attention span and the possibility of ADHD was discussed.

Debbie said: “While we were in there I asked that the doctor check over her stomach as I had some major concerns in regards to the size of the swelling, by this stage she looked like she had swallowed a balloon/ball.

“The doctor popped her up on the couch and proceeded to check her over and then asked for a second opinion, both of them confirmed they felt a lump and told me she had impacted faecal matter and that she needed to go back on four sachets a day of Movicol for at least six months to allow the blockage to move out.

“We went away but 3.5 weeks later, her tummy was not getting any smaller and the poo was now free-flowing out of her.

“I was thinking to myself, ‘good grief, she’s pooing like there’s no tomorrow. We did feel sorry for her, she was constantly on the toilet, she definitely wasn’t constipated.”

Debbie began Googling the symptoms which seemed to point to Coeliac Disease.

Finally, after weeks of appointments, Dulcie was referred to the paediatric team at her local hospital for further investigation.

Debbie said: “They finally said that what they were feeling didn’t feel like a poo lump.

“Once we got to the hospital Dulcie was examined by several doctors, after which we were taken into a side room where a doctor started to explain to me that what they were feeling was actually more like a tumour and that potentially Dulcie had cancer.

“At this point I broke down and said, ‘she can’t have cancer.’

Once back on the ward the following day Dulcie underwent extensive tests.

Debbie said: “In the ultrasound scan I could see and as soon as they ran the probe over Dulcie’s abdomen I said; ‘Oh my God, is that it?’

“They said it looks like a tumour. It wasn’t a lump of poo in her tummy, it was a huge mass measuring 17cm by 12cm.”

On 9 December the family were told that Dulcie had stage 4 neuroblastoma which was in the solid bone marrow and had also spread to her spine, pelvis and legs.

Debbie said: “My initial thought was that I wanted to go back and find all the doctors and punch them in the face.

“I just cried, my heart broke and I knew our lives were never going to be the same again.

“She is only five years old, I had never heard of neuroblastoma. I just kept thinking how has this happened to my daughter.

“You hear about this happening to children and you think it is terrible but you never think you are ever going to be in that position.”

Dulcie is currently having two days of chemotherapy followed by a day of hydration on a ten day cycle.

Debbie said: “We have had so many visits to the hospital. When she has the treatment her platelet levels drop and she has nose bleeds. She has had to have half a dozen blood transfusions.

“She knows she has got cancer, she sometimes says why do I have to have it which is not a question you can answer.

“Dulcie will have to have surgery, radiotherapy and stem cell harvesting so the treatment could last 18 months. It is going to be close to her 7th birthday by the time it is all done and dusted.”

The family is being supported by a Young Lives vs Cancer social worker.

Debbie said: “Just before the Christmas period someone put me in touch with Kate. That support has been really helpful, she put us in touch with charities who gave us grants.

“We were spending £15 a day on parking. Gas and electricity costs are also a killer at the moment, I am trying to keep the house warm as Dulcie is always cold.

“She sits on the sofa and we put the fire on and get a blanket and she snuggles in to that.

“The hospital has put me in touch with a psychiatrist. She has been giving me weekly calls to check in and see how I am coping. Sometimes you just need to offload before you explode.

“Some days I just want to put my face in a pillow and scream.

“I am a runner and I stopped running when all this started. I have recently started back up because things were building up in my head. It has helped, it makes me feel a little bit better.

“Some days it is completely overwhelming, some days I wake up thinking is this all a huge nightmare.

“Cancer has changed everything. I used to get up, get showered and dressed before breakfast, now I go downstairs as soon as I wake up and sort out Dulcie’s medication for the day.

“Then I will give her something every five minutes while she is having her breakfast.

“She is on 15 different medications within a two week period including anti-sickness and anti-fungal drugs. I have done myself a little chart because in the beginning I was panicking about forgetting something all the time.

““We have only been allowed one person in the hospital at a time because of Covid which is understandable but does make things a bit harder.”

Despite everything she is going through, Dulcie’s personality shines through.

“She loves to play dress up and dancing, she likes playing on her I-pad and the living room I just let her have a free for all and tidy up at the end of the day,” Debbie said.

“She likes playing with all her toys and is always asking Alexa to play music for her.

“Though Dulcie gets very tired, she sleeps then she bounces back quickly- the nurses say they can’t believe how smiley she is.”

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