Our Little Monkey – guest post by Cheryl Minniss

When asked to write a short story about our son Mason and his journey I said sure, I can do that… I have been trying to put down the words for the last few months, it’s actually very difficult to put it on paper your son’s journey in such a short story, but I will try.

Our son Mason was born in Cairns June 14th 2000, our first born and he was perfect. He grew into a happy carefree child, always smiling and enjoyed life and was just the best thing that ever happened to us, we then had Rohan in June 2002, Mason was so happy to have a little brother, they did everything together, inseparable, they were best friends. Always by each other’s side, they hated to be apart. When Mason started school Rohan started kindy and they also loved that they were so close, Mason used to come over each break and see Rohan through the fence. As his first year of school came to an end, we started to notice a few things were changing about Mason,  we didn’t really take anything too seriously as we thought he was just changing and school was all new and he had to adapt.

As things progressed and Mason went back to school we were following up on a few things our doctor had asked us to look into as he thought something wasn’t quite right with Mason, he was changing and he seemed to be regressing in a lot of his behaviour. After many months of psychiatry visits and trying different learning techniques we were sent to a Paediatrician for further tests. This is where our lives changed forever, Mason was sent for an MRI and as that came back with a possibility of 2 problems, we were sent down to the Women’s & Children’s Hospital, in Adelaide (WCH) for further tests, to pin point what his diagnosis was to be. After further tests our Mason who was about to turn seven years old, was diagnosed with Metachromatic Leukodystrophy (MLD);  a very rare Metabolic disorder.  We were devastated, we were told the most horrible news that a parent ever hears, our first born son, our absolutely perfect child had a metabolic disorder that has NO known cure, and our son was dying right in front of us.

We searched the internet, worldwide for any hope that we could find to cure Mason. We joined a MLD Foundation Family chat page and learnt more about MLD, sadly none of the families had good news. We were trying so hard to hold ourselves together for both boys, and we could see Mason changing before our eyes, almost daily. His behaviours were going back to a toddler stage, and our younger son started caring for him, like an older brother does. Rohan became VERY protective over Mason, he was the best brother in the whole world.

We were put in contact with Sara, head nurse for Paediatric Palliative Care, at the WCH. Sara is a lady we describe as ‘an Amazing lady who we hope you never have to meet’, she is an Angel that walks amongst us. Mason was with the metabolic clinic at the WCH, and as MLD took over his body we started seeing less of his Doctors and more of Sara. We nursed Mason at home, our family room became our hospital room, but we did have a few long stays in the hospital, which we were thankful to have the Sam Roberts room to stay in as a family. But as soon as we were able to we came home, this is where Mason was comfortable in his own surroundings and with our family. There was many a time we thought he was ready to leave us and we had to start to prepare that one day our boy was not going to be here, this is an unthinkable thought for a parent, and also watching his little brother losing his best friend.

We were given a ‘Journey’ folder from Sara and she told me that when I was ready to start to read it, it will help you understand what happens when Mason is ready. I finally knew I was ready to read it, (Rob never read it) and it did help me to understand although it broke what was left of my heart I knew what to expect. As the months went by Mason was in so much pain and we just wanted him to stop hurting. Our child should have never had to suffer as he did, his life was shortened by a hideous illness and we couldn’t fix him. The day that Mason left us, was just perfect for him. I believe that he had everyone around that he wanted and he was finally  out of pain, no more medicine, no more Doctors or nurses, he was at peace.

I cannot thank Sara and the Paediatric Palliative Care Service enough, the care and compassion they show to families is beyond a job. The knowledge these amazing nurses and doctors possess with the care of a child who they know will not be with their family for long is just mind blowing. These people see things, no one should see a child go through, yet they hold themselves with dignity and confidence and continue to help hold the families together as they feel themselves falling apart. The care continues after the loss of the child with bereavement support and also a sibling’s workshop with a play therapist which is such a special time for these brothers and sisters. To know that they are not the only ones who have lost a brother or sister, is very important. Rohan enjoys spending time with the other kids and I know the workshops help him a lot.

One thing I will always remember is that at Masons funeral Sara and Mason’s metabolic doctor attended, and they both said it was nice to see Masons photo’s, as they always meet them after they have been diagnosed and never get to see the happy moments and the smiles. I had never thought of that before and now I always remember those words.

We felt the need to help out others in some way after we lost Mason, we knew what these families were going through and although no amount of money raised could change the journey they were about to travel, we could make it a little more comfortable for them. So we formed ‘4in3’ The Mason Minniss Fund, with the Women’s & Children’s Hospital Foundation. The name 4in3 means we are now a family of 4, just in 3 bodies. This is something our youngest son Rohan said the day we lost Mason and although he doesn’t remember saying it, it was the perfect name for our fund to honour and remember Mason.

We now fundraise to help comfort the families when they stay in the hospital. We have a couple of ongoing projects which help the families, the first is the ‘Masonette’, a comfort cupboard which is wheeled into a ward/room in the hospital and is filled with items of comfort that the families can use whilst they are staying in the hospital. They are allowed to take a lot of the items home with them, as we know even the smallest thing can be a memory that will be cherished forever.

We also help fund ‘Butterfly Baskets’ these are also filled with comfort items that the nurses can give a family when they are either staying in an area in the hospital or they can take them to the family at their home, sometimes a small gesture is like receiving a big hug.

We also deliver ‘Ro’s Holiday Hampers’ at Christmas to families of the palliative care service, who has a child with a rare disease, or bereaved families, this is a very special delivery at a time that the families are supposed to be celebrating being together.  Many of us, ourselves included just can’t face the shops and the crowds this time of year, so with our hamper being delivered it helps them not having to struggle to get to the shops, and pretend to be enjoying the festive season.

Our family is doing ok, we miss Mason EVERY single minute but we speak of him often.  Remembering special times which is lovely but also very painful, as his time with us was only short, ten years and ten months and four of those years he was very unwell. Sadly our memories are all we have now, but we feel him around us always.

As I try to keep this short I want to share that Mason had two favourite songs, these were songs that he always loved and sang and amazingly he chose these before he was sick but the words of the songs that became his life songs;

‘It’s My Life’ by Bon Jovi  and ‘Unwell’ by Matchbox Twenty

We miss our boy ‘ our Little Monkey’ Mason, this is a very short compacted note about our boy with a HUGE heart and even BIGGER blue eyes, who one day we will be with again, but until then I believe he will be around us always and take care of us from up above.

Toodles

Battling with the reality that we have a daughter with a rare illness, that at times was so similar to her elder brother’s was frightening. Discovering she had a rare tumour, was quite confronting. But the fact was we as parents were going through this all over again.

Hospitals are places you visit other people, we had spent the best part of Luke’s last year on this earth in hospital and we really didn’t want to be there again.

But despite this, the staff at the WCH were unbelievable…I am talking about the nurses, doctors and support staff. I felt at times that someone was looking after or maybe over us. Bumping into nurses that had looked after Luke in the oncology ward over a decade ago wasn’t easy, it was spooky but also re-assuring if that makes sense.

At the time, you don’t really think you just act, and we knew that this hospital was the best place for Tayla, they also knew our history. We as parents just wanted to find out what we were dealing with and so did Tayla.

One of the first people I made contact with after our families and close friends was Sara. She looked after Luke palliatively whilst his cancer was terminal.

We appreciated her support throughout those first few years after Luke and Cody’s deaths. Although incredibly busy with her role as Unit Head of the Paediatric Palliative Care Unit, she still had time to keep in touch.

A person I have alot of admiration and respect for on a personal and professional level, she is also acknowledged in my book.

A current winner of the 12th Annual Nursing and Midwifery Excellence Awards in 2012, well it’s know wonder.

I am sure I am speaking on behalf of so many families that have had the privilege of meeting and witnessing her incredible compassion as a nurse.
She is nothing short of a phenomenon.

Ethereal-like quality
surpasses all humanity.
Unparalleled clarity
transcends immortality.

Hospital

As I sit in hospital for the second time in nine months, I realise just how much hospitals are places you “love to hate”. By that I mean although they are offering the best care, your “life is on hold”. It is also a case of more of the same, each day you sit and you wait, doctors and nurses come and go.

As the nursing staff and doctors prepare our daughter for her second operation to remove more tumours, quite frankly we can’t wait to get back home. Alot has changed in the fifteen years since we were last in this very same hospital with our son Luke who was battling Neuroblastoma.

The wards are slowly being renovated, which to say is well overdue is a gross understatement. Back in 1997, we shared a bay which consisted of four beds plus each patient had a cupboard and a TV, parents had just a recliner chair to sleep in. The only privacy was a curtain, that could be pulled around the bed. There was just one bathroom shared between all patients, consisting of a shower and toilet. If you were really lucky you had a side room, which meant complete privacy.

Today, most wards now have more side rooms as well as bays that can consist of four beds or two. Until you really experience what it is like to spend time in these wards you really appreciate what you have at home.

It is also an expensive exercise, paying for car parking, buying food at the hospital cafeteria’s or nearby cafe’s. But being able to escape the confines of the hospital walls, to regain one’s sanity is also important.

We are lucky as we will only spend a limited amount of time in hospital this time round. But for those long term patients and families which spend countless days, weeks and even months, each day seems to blend into the next.

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