The Big Hour with Rainbow Trust

the big hour rainbow trust

For many people, when the clocks go back, it means an extra hour in bed. But for those caring for a seriously ill child, that seemingly throwaway hour is incredibly precious.

 Amberley and John are parents supported by Rainbow Trust and are backing The Big Hour campaign this October. For more information please visit www.rainbowtrust.org.uk/big-hour or call 01372 220013.

A few years ago our two year old, McKenzie, fell off a chair and did what most boys do, he cried for a minute, then carried on playing. When I changed his nappy, he screamed in agony, but I didn’t know why. Through the day I noticed he had a stiff neck which I assumed was from the fall. My husband John, and I took him to the hospital where doctors suspected that he had meningitis. We were rushed up to the General Ward where we were told he had tonsilitis and could take him home.

Weeks later, McKenzie was still not right and after numerous visits back to the hospital, I noticed that he couldn’t turn his head and he had a pea sized lump on the side of his neck. I took him back to the hospital and an ultrasound scan and biopsy revealed that he had abnormal lymph nodes and Stage 4 Neuroblastoma. I was shocked and frightened.

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 had chemotherapy and was kept in hospital for eleven months. That was hard for us, we are a close family so juggling being in the hospital and being able to keep life normal for my other children was tough but we did our best.

McKenzie was diagnosed with a disease that destroys his red blood cells and causes kidney failure in children. He had 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. That’s when it hit home just how ill he was, we could have lost him.

When he was strong enough, McKenzie started treatment by an IV infusion drip which he had every two weeks in hospital. The drug slows his kidneys’ deterioration but we know he will need a transplant when he’s older.

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. When McKenzie was first diagnosed, he was given a 40% chance of survival and another mother on the ward said to me, “‘40%? That’s amazing!’ “I looked at her and thought, you’re right, even 1%, you have to cling to it!

We heard about Rainbow Trust through Clic Sargent and then met Dawn, a Southampton Rainbow Trust Family Support Worker, in the playroom at the hospital. She asked us what kind of help she could offer us so I told her we’d like someone to play with my children and bring some fun back into their lives, since they’d lost that with McKenzie being so ill. Dawn visited us and played with the children who immediately ‘clicked’ with her.

When Dawn comes to the house I can do the shopping without having to drag all five children along. If McKenzie is in hospital, I 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.

Dawn also supports us emotionally. If one of the older girls is struggling, I call Dawn to come and have a chat with her.

McKenzie doesn’t know how ill he is – he just takes his life as it comes and he’s the only child I know who rides his drip like a skateboard!

As McKenzie gets older, cosmetically, the damage of the treatment and his illness will become more obvious and he won’t be able to play certain sports like other boys his age but we encourage him as much as we can.

Dawn still support us with whatever kind of help we need and the hours she gives us lets us give our children back some normality. We know that McKenzie’s illness affects all of the family but with Dawn’s support, we can still make special memories – we take photos of all the children and all the time – we know how precious our time with our little boy is.

Please support families like McKenzie’s by taking in part in our campaign by visiting www.rainbowtrust.org.uk/big-hour or call 01372 220013.

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1 Comment

  1. October 30, 2015 / 02:32

    That’s an amazing story of courage and tenacity in the face of trouble.

    I was told some years ago I had had surgery on my penis to prevent the urine from coming back in (was reminded of this this morning when I seemed to be having a few problems with urination), but I’ve never heard of a child with a tumour in his neck! it must have been very tough, especially given that it was not recognised as a tumour for so long (and I have had fears of a tumour myself for a very long time).

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