Gemma and Martin's son Ashton was 15 months old in February 2011 when Martin was diagnosed with a brain tumour. Martin had experienced a grand mal seizure and an MRI revealed mate pukupuku / cancer.
"It was a complete shock," said Gemma. "That was the week the world fell apart." The couple saw a brain surgeon and were told that Martin would see Ashton start kura / school in three years’ time but would not see him finish.
Martin had surgery followed by radiotherapy and returned to his accountancy job. However, a follow up scan six months later showed further tumour growth. "It was a real shock as he hadn't been having any symptoms," said Gemma. "So he had another round of radiotherapy treatment which was unusual, being so close to the previous course. He finished work in August 2012 and hasn't worked since."
Ashton was very young at the time of Martin's diagnosis but by 2012, he was almost three and far more aware of what was happening with his father. When Martin took a turn for the worse in October that year, daycare made the birthday cake for Ashton because Gemma was with her husband in hōhipere / hospital.
"Ashton knew Daddy was sick but was still too young to grasp what was going on. Martin was referred to Mercy Hospice."
The whole whānau received support at Mercy but Gemma said their situation was different from many other families there because she had a young taitamaiti / child. "I was completely lost and didn't know what to say to Ashton. How can you help a child so young understand what is happening? How do you tell him that daddy only has a few years to live and cannot do the things other dads do? Martin used to take Ashton riding on the bus but became so unwell he couldn't do anything with him. I wasn't able to leave them alone at home any longer. Things became very restrictive for everyone. Ashton got upset a lot because he couldn't understand why daddy didn't want to do anything, or why he was often sleeping."
The next stage in the journey
In August 2013, a course of chemotherapy had been partially successful for Martin and surgeons hoped to buy him more time by de-bulking the tumour. There were serious risks involved with the operation. Martin had already been struggling with aphasia (an impairment of language affecting the production or comprehension of speech and the ability to read or write). The surgery damaged his brain, the aphasia worsened, and became permanent.
"Martin can still talk but he is very slow and struggles to find the words," said Gemma. "It's the same with writing. It takes him ages to write a three-line email. He was an accountant and now finds it hard to count to 20."
But Martin is determined to spend time with his son. With the help of a speech therapist, he is reading early learners books with Ashton. "We get them from the library and Martin practices all day so he can read to him. Cognitively he can 'read' just fine but he cannot get the words out."
Meeting Kenzie’s Gift
Mercy Hospice referred Gemma to Kenzie's Gift to receive help for Ashton. He has been seeing Kenzie's Gift Child and Adolescent Psychotherapist Lorna Wood since February 2014. Ashton was five in October 2014.
Feedback from Lorna about Ashton's behaviour gave Gemma 'a wakeup call' and she knew something had to be done. Lorna was concerned about Ashton's sense of security and worried about the bond he had with his māmā / mum, interpreting examples of Ashton's isolation in his play.
"I don't find parenting easy, and Martin was always much better at relating to Ashton. I was trying to hold down a job, run the household, manage daycare for Ashton and look after Martin's ongoing needs and medical appointments. I didn't have much time to spend with Ashton."
Gemma signed up for The Incredible Years, a 14-week parenting course for mātua / parents and caregivers of 3-8 year olds. Taking on this commitment added more pressure to an already overloaded schedule, but she finished it and spent more time with her son. Lorna reported a noticeable difference in Ashton's play. He appeared to be more secure in his relationship with his parents.
However, recent work pressures have meant longer hours, less time for Ashton, and Lorna noted a step back in Ashton's progress.
"There's a definite correlation. I've had to work hard at balancing my time to ensure I play with Ashton every day. He loves it. When we sit down to dinner and ask each other what was the best part of our day, he says, 'Playing with mummy.' I know that it matters."
The benefits of Kenzie’s Gift’s play-based approach
Young tamariki / children seeing Lorna through Kenzie's Gift love the therapeutic playroom which provides a consistent environment where the play is non-directed. Ashton plays a lot of rescue and hospital games.
"Lorna feels his theme is often around safety and re-enacting the hospital experience. Sometimes he will talk about daddy being in hospital and when we're driving around, he will say 'That's where daddy goes for blood tests - I hold daddy's hand while he's having a test to help him feel better.' So his understanding of what is going on has improved as has his coping with Martin's aphasia. Sometimes Martin will get stuck on a word and say, 'C'mon Ashton, what word am I looking for?' Ashton will try to guess and help him out. It certainly is a different situation for a child but it's all he's known. He was only 15 months old when Martin was diagnosed."
Kenzie's Gift has benefitted Gemma too. "I didn't know how to deal with these emotions and changes, let alone how to help my child and I've learned so much from working with Lorna. Our concern now is Ashton's transition to school. The school he will attend encourages a lot of parental involvement. Other children will soon realise that there is something wrong with Ashton's dad because he will never be seen and of course I'm not sure I can take on any more commitments."
As part of the work with Ashton, Lorna asked Gemma and Martin to make a therapeutic story book for him, telling the story of how his parents moved to Aotearoa from the UK, met at work here, had a baby, and then about Martin's illness. The project was challenging for Martin, but he managed to contribute, and the book has been finished.
"Lorna provided us with guidance on the type of language to use when describing cancer and the tumour. She loaned us helpful books that explain cancer in a way children can understand. Ashton loves photo books. I did one for him with stories and pictures about what he liked to do from age two to four and a half. Martin was in the book and sometimes he was there with hair or no hair and it wasn’t about his illness. That didn't come into it because I want Ashton to have a childhood that isn't centred around illness."
Gemma acknowledges that Martin is on a plateau at the moment, holding his own without treatment, but will not get any better. "People do recover from cancer and return to some semblance of normal life but Martin cannot. He is permanently disabled, and this is difficult for Ashton to understand."
‘For tamariki, grasping the concept of serious illness is challenging’
For a taitamaiti / child of Ashton's age and cognitive ability, grasping the concept of mate pukupuku / cancer and serious illness within the whānau is challenging and with the start of kura / school on the horizon, Ashton will receive additional support from Kenzie's Gift if needed.
"Kenzie's Gift is incredible. I heard about Kenzie's Gift at a time when I didn't know what to do for my son and when I was told about the service I couldn't believe it. Counselling is very expensive; I couldn't afford it and it's not possible for a child to have two or three sessions and then that's it. You don't make leaps and bounds progress with a child. It takes a long time, and they are developing fast at that age too.”
"It is so important to address the mental and emotional side of things for a child. Ashton comes up with confronting questions, even if he doesn't really understand what he is asking. Lorna has helped me learn how to answer his questions and how to speak to him.”
"One of his favourite sayings at the moment is 'I'll kill you'. At daycare they say 'bang bang you're dead' and then they're up and running around. They have no concept of what death really means. It's amazing to me that there is an organisation like Kenzie's Gift that recognises the importance of talking to Ashton about death and why his dad cannot speak. It would scar him for life if we didn't address this now and get the help he needs to make it through."
Gemma says hearing from Lorna that she needed to change too was a life-changer. "My behaviour was affecting my child. He needs a strong bond with me. His dad will become progressively unwell, and Ashton needs to feel secure and safe with me. A lot of charities seem to address the physical issues and practical side of things whereas the emotional side is sometimes glossed over, especially when it comes to caregivers, partners and parents. It is hard enough for an adult to deal with a bereavement or life changing event, but it is completely bewildering for a young child. They need help. Just like any other child, Ashton is exhibiting some concern about starting school and soon we'll review his progress with Lorna and see where to from here. Ultimately Martin won't be able to talk at all and we'll need more help at that time too."
Looking to the future
One thing Gemma has learned over the last three years is how strong we can be when faced with a huge emotional challenge. "When this happened I had a 15 month old child who was entirely dependent on me. I just had to keep going. It was an enormous shift from life as we knew it to something we never expected."
Three years is a long time to live 'in limbo' and Gemma decided this year to leave Ashton at home alone with his dad on occasion so she could enjoy a social outing with friends and attend her craft group. She is quick to acknowledge the wonderful support she and her whānau have received.
"We are so grateful. I cannot believe the generosity. It is very humbling. So many people have been exceptionally kind to us, and this has meant so much as we have no family here. I have the most versatile child! He has been passed from pillar to post, going to other people's homes to be cared for while I attend medical appointments and other things.”
"I hope one day I can give back in some way. You can never tell anything until you walk in someone else's shoes, have a journey of your own because then you have insight into what these situations mean."
If you’d like to support the valuable work that Kenzie’s Gift does, and the life-changing impacts we have on young Kiwis like Ashton, please consider donating.