Living with a brain tumour

Six-year-old Callum has a brain tumour that is too close to his pituitary gland to be removed. He needs to take medication for the rest of his life to replace vital hormones that he does not produce naturally. Mum, Sandra, remembers the surgery and treatment at Great Ormond Street Hospital (GOSH) that saved Callum’s life.

"The day before his second birthday, Callum wasn’t himself. We drove him around in the car to try to get him to sleep but nothing would settle him. On his birthday he started projectile vomiting. He’d been having vomiting episodes on and off, which the GP and hospital had dismissed as gastroenteritis a number of times. But I knew something wasn’t right.

"We took him to our local hospital and he was unsteady on his feet. The doctor said we could go home but I was unhappy and requested to see a paediatrician. She noticed that Callum’s head was slightly enlarged. They decided to do a CT scan and lumbar puncture. Callum was becoming more and more drowsy.

"The paediatrician called us into a room and confirmed our worst nightmare: it was a brain tumour. You hear the words and it doesn’t register at first. I went into auto pilot. Mum was at the hospital with me and I arranged for her to look after my daughter, who was with a neighbour. The hospital called an ambulance and rushed my husband and I to GOSH with Callum."

Emergency treatment

"There was a build-up of fluid in the cyst - part of the tumour - which was preventing brain fluid from moving around Callum's brain. When we arrived at GOSH, Callum was given steroids to relieve the pressure on his brain. The following day he had his first operation to create a drain, which meant a needle could be inserted into the top of the head and fluid drawn out from the cyst using a syringe.

"After the operation, the first thing the surgeon said to us was, 'He’s alive'. That really stuck in my mind.

"An MRI scan showed that the tumour was dangerously close to Callum's pituitary gland and optic nerve. He needed to have major surgery to remove part of the tumour to try to save his sight and make him well again."

Major surgery

"It is a horrible experience when your child goes under general anaesthetic. You hope and pray they’re going to come back from theatre. Signing the consent form was heartbreaking because we understood the risks involved. But we had no choice. We had to put all our faith and trust in the surgeons.

"Callum went to sleep quickly and it was difficult turning our back on him and walking away. The operation took eight hours - every minute felt like an hour. We were climbing the walls. We went for walks, drank endless cups of coffee, went back and forth to see if there was an update."

Recovery time

"Callum was very cold when they brought him into recovery and they wrapped him in something that looked like tin foil. It was hard holding him with all the tubes coming out of his head and I was frightened of knocking one. He was so vulnerable.

"The surgeons were amazing. I believe Callum wouldn’t be here today if it wasn’t for them. Thankfully Callum’s sight was saved but his left eye was damaged and he now wears glasses.

"It is remarkable how resilient children are and how quickly they’re back up on their feet after surgery. It wasn’t long before we were wheeling Callum’s monitors into the playroom at GOSH and within a couple of days we brought Callum home."

Infection

"Callum went on to have six further procedures in surgery - five to insert or remove drains and another eight-hour operation to remove the solid part of the tumour, which was again putting pressure on the optic nerve. 

"Unfortunately, after one of these procedures, they found an infection in the fluid in Callum’s brain and we had to return to GOSH immediately. He spent three weeks on Parrot Ward hooked up to antibiotics for nine hours a day. It was a really difficult time. Luckily Callum never showed any signs of infection.”

Hospital stays

"Callum found being in hospital hard. He kept saying ‘out’ and pointing to the door. We tried to make it as homely as possible for him and brought his sister to visit. 

"The play specialists really helped. Every day there were different activities: games, drawing, Wii, DVDs. On Halloween there was a little party and all the children made hats. The matron and nurses were brilliant and tried to cheer Callum up. They care so much about the kids.

"Callum loved the playroom at the hospital. He would fly up and down the corridor in this little red car. There were times when Callum lay exhausted in bed but other times, just like a typical toddler, he didn’t want to stop. You wouldn’t have known he had a brain tumour.”

Medication for life

"The tumour damaged Callum’s pituitary gland, which means it doesn’t produce certain hormones, including cortisol (stress hormone). He needs to take replacement medication for the rest of his life to manage this.

"Callum has four lots of medication a day: thyroxine to help his metabolism, hydrocortisone to replace the cortisol, melatonin to help him sleep, and growth hormone to help him develop. It was frightening being given this huge responsibility. I was scared of forgetting, or getting bubbles in the syringe. We were always clock watching. Missing a dose would have a huge impact - Callum could go into a coma.

"I took five months off work and everything revolved around the children. I would set alarms on my phone to remind me about Callum’s medication. At first preparing it was fiddly (you have to mix it with water) and leaving the house was a bit of a nightmare. I was constantly triple checking everything. Your two-year-old’s life depended on you getting it right.

"The Endocrinology department at GOSH has been so supportive. They showed us exactly what to do day to day and in an emergency. If Callum’s body goes into shock - for example, if he catches flu - he needs extra cortisol to cope, so we double up his medicine. If he becomes drowsy or for any reason we can't get medicine down him, we give him an emergency injection.”

Radiotherapy

"When Callum turned three, he was old enough to have a six week course of radiotherapy at University College Hospital (UCH). It was crucial that he stayed completely still during the treatment so they had to give him general anaesthetic. He wore a specially designed mask, which enabled the radiologists to target the correct area.

"Callum never once objected to going to the hospital or being starved (for the anaesthetic) each morning. The hospital made it as fun as possible for him. Towards the end, the radiotherapy started to take its toll and Callum would get very tired. He lost his hair where the rays went in and out. The course finished on Christmas Eve.”

Growing up

"Callum’s tumour is stable at the moment and there’s been no change for about 18 months. He’s a happy, cheeky six-year-old - a real character. He loves school, plays football every Saturday and is learning to swim. He has us all wrapped around his little finger.

"It’s not going to be easy for Callum. When he was two years old, he had an expressive language disorder and saw a speech and language therapist frequently. But his speech is fine now. He has problems with his short term memory but he’s doing really well with the school’s support and an occupational therapist.

"Once a year Callum visits Kingfisher Ward to have a medication profile to ensure his dosage is correct. This involves inserting a cannula so that blood can be taken and tested every two hours. It’s upsetting for him but the nurses try to make it as easy as possible by making him laugh and distracting him so that he hardly notices when the cannula is fitted. 

"Callum has an MRI scan every two years. He also visits the Opthamology department every six months to test his vision, check for pressure on the optic nerve from the tumour, and the signals from the optic nerve to the brain.” 

Staying positive

"We thought we had it all: we got married, bought a nice home, had good jobs and two beautiful children. Then one day something happens and your life changes. Your health is everything. I would give it all up just to have good health for my family.

"The tumour is not going to go away and we never forget it’s there. We cried a lot when Callum was first diagnosed; we still do now. But we don’t want our children to remember their mum and dad as always being sad. We need to make the most of our time and have fun. We try our best to look forward and hope and pray that, one day, they might come up with something to get rid of the tumour. It is wonderful to see how well Callum’s doing at the moment and that’s what we focus on.”

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