Lara’s Mum, Christine explains why Acorns means so much
Lara was an average 13 year old. She was an above average student at school and would go to youth clubs with her friends, play football, take dance lessons and she loved arty things.Lara became ill on the first day of the summer holidays in 2014. I thought it was just a tummy bug but after a week she wasn’t getting better, so we went to the doctors. After some tests she was admitted to hospital. A scan the next day revealed she had a brain tumour.
That October she had an 11-hour operation to remove the tumour and, at the time, the lead neurosurgeon said it was the most difficult operation he had ever done. The tumour bled an awful lot and she had to have a whole body blood transfusion. Luckily, the operation was successful.
But by January 2015, not only had the tumour regrown, it had also spread to another part of her brain. This meant she had to have radiotherapy. It was growing back so quickly you could see she was becoming very poorly in front of your eyes. The treatment made her very sick but it cleared the tumour. Or so it seemed. Fourteen months later the tumour had grown back and had spread down her spine. Since then, Lara has been on a specialist drug which has worked really well for her.
Due to the reoccurrences of the tumour and the treatment she has had, Lara has been left with many complications. She has constant pain in her abdomen and joints; she is on oxygen 24 hours a day alongside literally a handful of drugs. She has had to relearn to walk and talk, and she has suffered damage to her vision. Going to school hasn’t been an option for Lara for four years due to the pain and fatigue. Her confidence has been knocked as well. She sees what her friends are doing and realises she can’t do the same things.
Things are very different to what it was like before Lara was unwell. My life is different too. Caring for Lara is a 24/7 job. I only found out about Acorns at the beginning of last year. I found myself asking what would happen to Lara if I weren’t there, so the hospital referred us to Acorns.
Acorns do a number of things which help us greatly. Lara goes to the hospice in Birmingham for short breaks over the weekend and has the best time when she is there. The staff do activities which she enjoys and that allow her to experience some of the more normal teenage social activities she has missed out on, like shopping and going to the cinema.
Being unwell means Lara has lost some of that social interaction she had with her friends. I am her friend, of course, but it’s not the same as having your own group of friends. That’s what Acorns gives Lara. She gets to meet other teenagers the same age as her and interact in a way that isn’t with me or a nurse. The staff are wonderful too, she has a very close relationship with her youth worker who she sees every other week.
It’s good to know that Lara is in an environment where she’s being cared for properly, where if something goes wrong with her medically there are people on site. But the medical side is not the focus. It underpins it but it’s in the background so Lara can focus on the social stuff. For Lara, Acorns is her special place where she has a fantastic time and gets to make some special friendships.
The support that Acorns gives us means so much. For Lara, it gives her the social interaction she misses and the opportunity to do normal teenage things. For me, it gives me tiny micro breaks so that I can carry on long term. Whether that is finishing a whole cup of coffee or catching up on my to-do list; I can relax knowing that Lara is being cared for and is happy while she’s at Acorns. I can’t express how valuable that is.
