9 minute read
Life of Riley
By Tammy Sinclair
I was asked to talk about mental health in kids and I was a little worried about doing it, as it’s such a personal thing. How do you work out if your child has a mental health issue or are they just unable to process what is going on?
Our family has been dealing with a lot over the last three years and I have noticed a lot of changes in my son. Riley was diagnosed with Acute Lymphoblastic Leukaemia (T-cell ALL + CNS3) in October 2018 at almost eight years of age. This came as a complete shock as he had no symptoms and was an extremely active child who never sat still. We took him to the Monash Children’s Hospital for a potential eye fracture after hitting himself in the eye with a child’s toy and came out with a diagnosis of Leukaemia almost 12 hours later. We say that ‘Angel Craig’ (our nephew who passed at 8.5yrs) was sitting on his shoulder that day and let us know that he was sick. If he wasn’t diagnosed for another six months, it would have been a completely different story. He went from an extremely active child playing sport six days a week, to one that could not walk about a month later due to the chemotherapy.
One of the first things I did notice was a struggle for connection between Riley and his dad, Greg. It’s extremely common for dads’ who have children
with cancer or any major illness, as they do not know how to deal with it. They are supposed to be the protector, the one to keep everyone safe, and as the ability to help is taken out of their hands, this can cause major upheaval to the family.
I spoke to Riley about how and what he was feeling, and to see if he wanted to talk to anyone about it. I spoke to our social worker at the hospital, and she referred me to a psychologist in the cancer centre. Initially, Riley spoke to her, however he decided that he no longer wanted to do that when COVID hit. Whether this was because it was too hard to do over a Telehealth call or he felt that he didn’t need, I am not sure.
One of the things that ended up happening, which was major for us, was the local soccer team, the East Bentleigh Men’s Strikers, invited Riley to become their mascot. This had a huge impact on him.
As he was losing the male contact with his dad, the boys on the team picked it up, and became his friend/ confidant.
If Riley was feeling upset or stressed about anything, he would ask me if he could contact a certain person from the team. He would then speak to them and feel better, or he would talk to them when next he saw them. We would go down and he would participate in training sessions and watch them when they were playing at home. Some games we would go there straight from the hospital. Riley just loved going to watch them play and be part of the team.
2020 was going to be a good year, as Riley was starting to get his energy back, and we were all hoping that it was going to be onwards and upwards. However, life does not always go the way that you expect. In June 2020, my husband and Riley’s dad, passed away suddenly. We were about to go out for brunch and he didn’t feel well, so I suggested he lay down and rest and I’d take Riley out and get lunch. When we came back, he was gone.
We are both dealing with the guilt, thinking that if we had stayed, we may have been able to do something to help. The paramedics however advised that it was probably not likely that we would have been able to do anything, and even if he was in a hospital, it may not have helped. I told Riley that ‘Angel Craig’ was looking over his shoulder again, as Riley has seen so many code reds and blues in hospital and they all turn out okay, he didn’t need to see me or the paramedics working on his dad, and then it not to be okay.
With Greg’s passing, I had to go back to work, as I had been a carer for two years. Riley returned to school, and was becoming quite introverted. I asked him what was going on and he advised nothing major, and he was okay. This went on for a couple of months until one pickup time; he hopped in the car and burst into tears. At this point, I knew that it was ‘not’ nothing! He couldn’t continue on this way. We’ve always had a very close relationship, even prior to him being sick, so we curled up in my bed and talked about what was going on, and I found out that there were some kids at school and a teacher, bullying him.
However, as he is a child that does not like to cause conflict unless it is to protect someone else, he will not speak up.
He is very protective of someone smaller or weaker than he is, and not so good at looking after himself. I ended up stopping work so that I could concentrate on Riley. Despite all the meetings held with teachers, and specialists at the school, nothing changed.
One of the things I noticed during COVID, was due to Riley’s illness - he was unable to socialise due to being immunosuppressed - all his contact was via the PlayStation. This has caused my once very active, friendly and outgoing child to become somewhat introverted. This is a concern for me with all the changes that have been going on in his life.
2021 was supposed to be a good year as the children were back at school, he was excited to be there, however he just did not have the energy, and when he did go, he was bullied or hurt at lunch or recess, so it really made him feel down.
I only had two meetings last year and at the second meeting, feeling a lack of support I explained that if Riley still looked sick – i.e. had no hair and was extremely pale, we would not be having this issue – as when he was sick, they would bend over backwards to help him. Due to the radiation that he had, he is forgetful and easily side tracked, however he is an extremely bright child who just needs someone to keep him on the right path. After Riley was called lazy and me a bad mum, you can imagine how our mental health has been affected.
Since approximately August 2021, Riley has been very lethargic. His oncologist advised that it happens in some children where their body has just had enough of the medication. One of his major chemotherapy tablets was reduced to 75 per cent daily and after several months; this has slowly started to improve. I have high hopes for 2022. Riley is starting to feel better, and he finishes treatment on February 20. He loves his new school teachers and is looking forward to swimming – which is one of his favourite sports that he was doing twice a week prior to being diagnosed.
Every day I ask Riley what are the good things that have happened today? I then ask if there are any bad things and if there are any things that he wants to curl up in bed and talk about. It is very important to keep that line of communication open. Even though he is a child, he needs to know that he can come to me if there are any issues. I have never lied to Riley and if he asks a question that is too old for him, I will give him a PG version and advise that he is not old enough yet and we’d discuss it when he’s older.
A great GP is always the first point of call for any issues that you may suspect. If there is a crisis, please don’t hesitate and head to emergency. It is better to head to emergency and not need it, then regret not doing it. I have listed a few numbers and websites below which may be of use.
If you have a child who is struggling with mental health, or is unwell, try linking into Riley’s Facebook page to help your child go through each process that Riley may have gone through. If you have any questions, please feel free to reach out.
One point to note is the blue shirt Riley is wearing, is called a Supertee and is a medical garment for children undergoing extensive treatment. They wear this instead of the hospital gown, and it can go through MRI’s, CT’s, MRI’s, X-ray’s, and is fabulous when they have a port etc. We are a big advocate for Supertee – Strength through imagination!
Other great supports available: Kids helpline: 1800 55 1800 - www.kidshelpline.com.au Headspace: 1800 650 890 - www.headspace.org.au Reachout: www.au.reachout.com Beyond Blue: 1300 22 4636 - www.beyondblue.org.au
Image Credits: Tammy Sinclair, Memories by Penny
