Zack's Story

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A Brain Tumour Totally Changed Zack and Our Lives

I am Zoe, mum to four boys: Kyle, 28, Declan, 15, Zack, 13, and Riley, 10.

At the end of August 2021, just before starting year eight at school, Zack had what I thought was a sickness bug but he also told me he had a really bad headache. I was very concerned so I took him to A&E and, whilst we were there, he had a seizure. He was taken for a scan which showed that he had a brain tumour. He was immediately transferred to James Cook Hospital in Middlesbrough for emergency brain surgery to relieve the pressure of fluid on his brain. I was terrified. I was so worried and anxious about all of what was happening.

After that we were admitted and spent the next three months at the Royal Victoria Infirmary in Newcastle for treatment. He is now back home but I take him to the hospital every week to have chemotherapy.

Unfortunately, the tumour also left Zack with a brain injury and he is now registered disabled. Whilst Zack’s disability does not affect his ability to move, long walks are difficult. Brain injury manifests in different ways and, in Zack’s case, he may become emotional and he forgets little things easily. Zack does remember his Family Support Worker, Kate, very well though.

Kate started supporting our family on the hospital ward, while Zack was going through the first stages of treatment. She now supports us mainly by taking Zack out. They spend three hours a week together which gives Zack some special time, one-to-one support, and allows me some respite, enabling me to do other things and catch up with family admin and chores. The brain injury has completely changed Zack’s personality and at times he can be totally unpredictable. At one point he told people that Kate had abducted him! Kate takes it all in her stride and is fantastic with him and with me, she is a great addition to our support network.

Zack’s life has changed so much. He can’t attend his usual school now so we are in the process of finding him a specialist school that can meet his needs.

In the meantime, the local authority has arranged home schooling and Zack has a tutor four days a week. He loves maths so he’s really pleased with this arrangement and recently asked his tutor for something harder. I am proud of him for how he is dealing with his situation and also for being such a keen student.

Being 13 years old, Zack understands what is going on and may get emotional about how his life is now. The time he spends with Kate helps him to manage and deal with what he is going through. Kate helps Zack with coping techniques and by talking about the challenges he faces everyday.

Living with teenage boys, like any parent, I am very busy and I simply try to cope with this challenging situation. I am very practical, very hands on and try to stay positive. Zack’s outlook is uncertain. The MRI scans have shown that the tumour hasn’t shrunk and he will definitely need more treatment after he has finished the current round of chemotherapy.

Zack tells me that he loves going out with Kate as he feels safe and he always has fun.

Without the support from Kate I feel we wouldn’t get the break we both need.

I would encourage other families to ask for support from Rainbow Trust if they are facing living with the worries and stresses of childhood illness; they are a lifesaver.

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