In August 2011, two year old McKenzie fell off a chair and did what most boys do, he cried for a minute, then carried on playing. When his mum, Amberley, went to change his nappy, he let out a “high pitched scream in agony,” but she didn’t know why. She watched him over the course of the day and noticed he had a stiff neck which she assumed was from the fall. Amberley and her husband John, took him to Lymington Casualty where doctors suspected that he had meningitis. They were rushed up to the General Ward where they were told he had tonsilitis and could go home.
Weeks later, McKenzie was still not right and after numerous visits back to the hospital, Amberley noticed that he couldn’t turn his head and had a pea sized lump on the side of his neck. In October of that year, she took him back to the Paediatric Centre who, once again, told her it was nothing. Amberley refused to leave until someone examined him. An ultrasound scan and biopsy revealed that he had abnormal lymph nodes and Stage 4 Neuroblastoma.
The tumours in his neck had started crushing his airways so McKenzie was put into a coma for four days to save his airways from collapsing. He underwent chemotherapy until the end of March and was kept in hospital for eleven long months.
McKenzie was diagnosed with atypical HUS, a disease that destroys red blood cells and causes kidney failure in children. He underwent six months of chemotherapy, then surgery, then radiotherapy which involved a general anaesthetic daily for three weeks. The chemotherapy had to be stopped as his body had begun to shut down, “If we’d given him one more dose of chemotherapy, we’d have killed him,” says mum. In the September of that year, McKenzie started treatment in the form of an IV infusion drip which he had to have every two weeks in hospital. The drug protects his kidneys by slowing their deterioration but the family are aware that he will need a transplant when he’s older.
McKenzie is the only person in the world who has this condition - most people who suffer from HUS recover but McKenzie won’t. “We take every day as it comes, we wake up in the morning and today’s a good day. We’re very lucky, a lot of McKenzie’s friends on the ward have passed away. We’re lucky to have made it this far, we just don’t know what tomorrow will bring. Today’s a good day.” For a family which has been through so much heartache and difficulty, they are exceptionally positive and see each day as a blessing. Amberley remembers the day when McKenzie was first diagnosed and given a 40% chance of survival and another mother on the ward said, “‘40%? That’s amazing!’ “I looked at her and thought, you’re right, even 1%, you have to cling to it!”
CLIC Sargent recommended Rainbow Trust to Amberley and John but they didn’t feel that services like taking children to and from school was something they wanted. A while later they met Rainbow Trust’s Southampton Family Support Worker Dawn in the playroom at the hospital. She asked them what kind of help she could provide and Amberley told her she’d like someone to play with her children and, “bring some fun back into their lives,” since they’d lost that with McKenzie being so ill. Dawn visited the family’s home and played with the children who immediately ‘clicked’ with her. “They all just love her, don’t’ they?” Amberley says to John.
The time Dawn spends with the children allows Amberley to do the shopping without having to drag all five children along. If McKenzie is in hospital, she can ask Dawn to help out with the other children.
“One day when Dawn came, she told John and me to go and have a meal, just us two, we never get to do that,” remembers Amberley fondly.
As well as playing with the children, Dawn provides the family with emotional support, “If one of the older girls is struggling emotionally, I call Dawn to come and have a chat with her.” She has been very supportive throughout McKenzie’s illness and helps the family stay optimistic.
McKenzie is unaware of the enormity of what he has been through and accepts his life for what it is and makes the most of it, “He’s the only child I know who rides his drip like a skateboard,” laughs his mum.
He recently underwent some tests which revealed that his bladder is the size of a walnut so can only hold 40ml, “…so he’s been wetting himself for the past two years and people think he’s lazy or just hasn’t cottoned on, but he’s had this problem.” Doctors don’t know if his bladder was damaged during treatment. McKenzie also has Horner’s Syndrome which means he has one pupil much larger than the other, a droopy eyelid and reduced sweat on one side of his body, “when he’s been running around, he has a half red face and half his hair’s wet,” tells mum.
As McKenzie gets older, cosmetically, the damage of the treatment and his illness will become more apparent. Despite all of this, he looks like a typical happy five year old playing with his siblings. He won’t be able to play certain sports like other boys his age but his parents encourage him in every way they can. “He came home from school with a note about a Construction Club and when I told him he could do it, he said, “Yes! I got one!” and then ran around the office the next day telling the staff he could finally join a club.” His enthusiasm to embrace life is obvious and, despite being a very poorly little boy, he still manages to face each day with a smile on his face.
Older sisters, Memphis and Missy, wanted to give, “something back to the other sick children,” so have been fundraising for Rainbow Trust in a number of different ways. They have organised a non-school uniform day at their school where children went to school in rainbow colours and they’ve organised a cake sale in aid of Rainbow Trust. Their latest idea is a Big Tea Time for Rainbow Trust in line with The Big Hour campaign. On 22 October, the family’s local pub has agreed to let them run a fun day with a raffle, games, cake sale and refreshments, all in aid of Rainbow Trust. The girls have been given the day off from school to be a part of their great idea and hope to raise as much money as possible. “…the biggest support [for us] has come from Rainbow Trust and we are going to try our hardest and anything will be a bonus, won’t it?” says Amberley.
Dawn continues to support the family providing whatever they might need. Her time is precious to them as they continue to juggle life with five children and hospital visits, while maintaining a positive environment for them all.