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Simone's story


Simone's storyIt started like any other day in our busy household. Getting four children out the door is no easy feat at the best of times. We had decided to take the children out  for a Sunday treat. We headed out for a beautiful family picnic and day together. When we got home and were getting the children ready for a bath I saw that my five year old son was not using his left hand to get undressed. I had noticed in the week leading up to this day that he had been a bit clumsy and slow when climbing into the car - one day he even fell when trying to get out of the car.


My initial reaction was that he had hurt his arm when he fell that week. But when I questioned him as to why he wasn’t using it, he simply replied, “I can’t.” What do you mean, ‘you can’t’ I thought - that didn’t make any sense. My son had always been perfectly healthy and reached all his milestones growing up, been above average in many ways. What was going on inside his little body? 


The next day I grew more concerned and decided to take him to our local GP. By this stage my mother’s intuition was already fearing the worst and preparing myself for what might be. I was secretly hoping that the doctor would just reassure me and tell me it’s just a muscle strain, or another simple explanation.  That was not to be the case; it was the beginning of our life changing, earth shattering diagnosis.


We went straight to the Royal Children’s Hospital (RCH) for a CT scan which showed a brain tumour nearly the size of a golf ball in his brain stem. We had been bracing ourselves for that moment but nothing prepares you for having the wind knocked out of you so hard like that news did. We tried to keep it together in front of our son but inside the pain was more than I thought I could ever bear. This diagnosis for anyone is devastating - for us, knowing that at one stage in our lives we may not have had any children, we felt he was a gift and was so very much wanted, so it cut like a knife. I had so many questions and felt scared. I thought I knew what stress and anxiety was, but this…this feeling cannot be described or explained, it’s like nothing I’ve ever known. 


We were admitted to a ward where we waited and waited for an MRI to confirm what kind of tumour we were facing. It was the longest wait of our lives and saw us grieve in a way that can only be described as heart-wrenching, searing pain. I remember being in the foetal position on the bathroom floor of the hospital sobbing my heart out, it was unbearable. The unknown was too hard, too much! We tried not to get ahead of ourselves while we waited to see what we were dealing with and what treatment options may be available. But we knew at worst he was going to be gone within weeks and that was just not something I could cope with or accept. There was no way to prepare ourselves. I felt like I was trapped in a nightmare because my son having a brain tumour was unfathomable to me.


Simone's storyThe neurosurgeon came to see us and I felt so ill I thought I was going to throw up. My stomach was churning, I hadn’t eaten or slept in days and although every fibre of my being was trying to be hopeful I was so nervous I couldn’t contain myself. When we received the news that the tumour was not operable but it was contained and was treatable, we felt like the weight of the world was lifted off our shoulders and we had been given a second chance. We knew that many people would not get our diagnosis and our hearts were heavy for them, but we were so relieved for our boy and thought we can face this; we will do whatever it takes.  We naively did not know what was to come though and that this was just the beginning of the most harrowing experience for us all. 


Our little boy then had a biopsy which worried me greatly - any brain surgery has its risks - but I knew we were in the best hands and that he had world class surgeons operating on him. We nervously got through the operation. He woke up and spoke to us! He did not have any major deficits or noticeable brain damage; immediately I began to cry. He started a clinical trial and chemotherapy treatment as soon as he recovered from surgery. 


We thought we were through the worst of it but then his tumour grew. It got to a point that it was life threatening and he had symptoms of hydrocephalus. He lost all movement on his left side, was immobile, vomiting, his eyesight was affected and he was so sick. This is when his diagnosis really affected us all because his symptoms were so severe. It was really tough and not fair to watch. He was put on steroids which made him blow up like a balloon and he no longer looked like our little boy. I was very frightened. 


His medical team said it was time to try to surgery. WHAT? Operate on an inoperable tumour, are you all crazy? I thought. They told us he was running out of time and we were out of options. We were so confused and angry. How could this be happening to our beautiful son? Why him? Why any child? We were feeling like we had gone back to the day he got diagnosed we were completely petrified. The anxiety you feel is unparalleled. You can’t get your head around any of it and it is all happening so quickly. You are helpless and all you can do is have faith that the experts know what they are doing. For two weeks before the surgery every night that I tucked him into bed I gently kissed him, breathed in his sweet smell, stroked his creamy soft skin and prayed like I had never prayed before, please wake up tomorrow.


The day of our son’s surgery we were up early and in the hospital, they prepped him and under yet another anaesthetic he went, the fifth one in four months. An hour and a half into the surgery we received a call from the surgeon and we thought oh my goodness this can’t be good it’s an 8-9 hour surgery. My heart pounded so hard in my chest as I took the call and I starred at my husband and tears fell and I said, ‘You have decided WHAT? You are NOT doing the surgery? The MRI showed WHAT?” I turned to my husband and said, “They have called the surgery off, his tumour has shrunk 5mm.” This was just enough to keep him alive and the fluid able to flow through the ducts in his brain.


We didn’t know what to do next - we sat there just staring at each other, we felt like vomiting from sheer relief. We were overwhelmed and wandered aimlessly around the hospital. We finally collected ourselves and then ran to be by our son’s side in recovery. When I saw him lying there in the hospital bed, I remember thinking to myself, even though he had just turned five years old he looked so small. With his little hands in mine it felt like it did when he was baby, so tiny, so frightened and so vulnerable.

Despite our son being really sick and in and out of hospital over the next few months, not having the second surgery was a game changer for us. He continued to make progress and his tumour continued to shrink. He has worked very hard with such determination at his rehab sessions even when it hurt so badly and he couldn’t hold back the tears. He can now walk, run and ride his bike. He still has some falls but he has an AFO brace and is out of the wheelchair, so he can go to school for a few hours a week and try to be ‘normal.’Simone's story


The main things now are managing the side effects of chemotherapy, his fatigue, avoiding illness and infections. And sometimes saving him from himself by making sure he doesn’t overdo it! He has gone from sleeping up to five hours a day, to having a rest in the afternoon and only naps a few days after treatments, or if he has done a lot of physical/cognitive activity. His recovery and attitude have amazed his medical team and we are exceptionally proud of his bravery. 


I have found it has been harder for me to let go and keep up with him because it’s only been eight months since his diagnosis, and only two months since he has been able to function independently again. These past few months have been taxing to say the least, with countless hospital appointments, meeting numerous medical staff, surgeries, rehabilitation and physical therapy, hydrotherapy, physiotherapy, occupational therapy, neuropsychology examinations and assessments, chemotherapy infusions, stints in hospital or rushing to the ER when he gets a fever,  violent vomiting or dehydration, MRIs, blood tests, audiology tests, oncology reviews, ophthalmology genetics testing,  taking turns sleeping on his bedroom floor monitoring him, caring for him, constantly checking his temperature, being diligent about dosages and medications to take at home, being  hypervigilant about the prevention of infections and viruses, constant hand washing and house cleaning.  


I know how this has affected us as adults but I can’t fathom how this has affected him and what it felt like to be a fully functioning competent child, to have lost all ability, to then relearn how to go to the toilet, bath, walk, feed himself and ride his bike all over again – while feeling so ill. He must be so confused and scared about what was happening to his body.


His treatments are every two weeks and once a month he has a double chemotherapy infusion in a day, for 12-18months. We are nearly half way, we still have a long road ahead but we are managing the week to week appointments and nausea that comes with chemotherapy. We are trying to do things as a family when he is well enough. I am very proud and pleasantly surprised by our resilience and the way our little family has handled all of this. It has not been easy on anyone and affects everyone differently. Our son has a twin sister and this diagnosis I think has been particularly taxing on her. They share a special bond and his absence is felt especially when she is in prep at school and he isn’t there with her. They have rarely been apart since birth! 


I found it difficult in the beginning to not shower him with gifts for his bravery. This is something we have had to manage and when other people send things, we have been mindful of how much he receives and how that affects the other children.


Other difficulties have included: trying to be brave in front of the children, finding a way to explain to them what was going on without worrying them, fighting back the tears at unwanted times, not being able to express myself when I am overwhelmed with emotion, the strain placed on my husband and my relationship, the uncertainty, being away from my family when in hospital, protecting the children from people’s questions at school, maintaining the boundaries, behaviours and disciplining a sick child, getting him to take medicine, getting him to eat, being on one wage, financial concerns, being limited by his diagnosis, not travelling anywhere too far from RCH for a year, constant appointments,  always feeling tired, overwhelmed, worried and sad, knowing and living with the knowledge that even if we beat this now he has a high chance of it reoccurring in his lifetime and no guaranteed 100% cure.


One of the hardest days was when my beautiful boy was so very sick, he looked up at me and said, ‘Mummy am I going to go to heaven?’ My heart sank it was a heavy burden and I did my best to explain to him that I didn’t think so. This reality was more than I could bear.  Another day that stands out in my mind was when I heard my son tell the medical team, “My mummy cries a lot, I think it is because she loves me so much.” We have been on a turbulent journey that has seen us take two steps forward and then three steps back. We have now had time to regroup and we just keep moving forward. I can only pray and hope we keep moving in the right direction.  


We simply cannot thank enough the amazing charities that have provided us with financial support, and charities that provided family activities that we simply couldn’t afford - it takes our minds off brain tumours and cancer for a moment. These kind acts have eased the burden and stress associated with our son’s diagnosis and given our other children some happiness in a time where fear has overridden all other emotions. 


No one can prepare themselves for a life changing diagnosis but my advice to those who have just received traumatic news is that even when you think I can’t do this, I can’t cope with any of this - you can, you will and you do. I don’t know how, even the strongest of people will fall apart at the sight of their sick child but you do get through it, because you don’t have a choice. You just do it, you do whatever it takes! It is cruel and heart wrenching but you just hang in there hour by hour and day by day, hanging on to hope until you find some sort of peace that assists you to manage the unimaginable!


These sorts of illnesses take their toll on everyone in the family. Reaching out and using all the support and counsellors available to you is so important for your own mental health. The fatigue from being hypervigilant or constantly playing over conversations with specialists in your mind, trying to comprehend what’s been discussed, is all very overwhelming. The tears will flow and the cycle of grief will continue to affect you over and over and sometimes when you least expect it.  


Simone's story

No one wants to be become an expert in cancer involuntarily or become the carer of someone you love. The hardest thing to do is to watch someone you love suffer. As a parent you want to protect your child and take their struggles and pain away. Over and over I’ve thought let it be me, let me fight this fight, not my five year old boy. However, through our journey and amidst the pain and sorrow we have found such kindness, compassion and understanding from so many beautiful people.  We have learned how to cope in a crisis and not to take life for granted.




The things I find that help me are:

  • talking to the children on their level and not overwhelming them with adult information
  • talking with the hospital staff and friends
  • writing down my questions for the medical team as I think of them
  • having a shower and a good cry
  • positive self-talk or prayers/wishing
  • meditating when I’m too tired to think straight,
  • taking a walk with my husband (child-free) to clear my head and express what I am feeling and listen to his journey
  • watching funny movies to take my mind of the heaviness that is our reality
  • spending time with my other children
  • going to events run by charities like Camp Quality
  • reading other positive tumour/cancer stories with happy outcomes against all odds
  • avoiding family or friends where I have to be the strong one or rehash his progress
  • making one person a spokesperson for the questions people have
  • not taking on other people’s grief
  • not listening to negative people who catastrophise things
  • NOT googling
  • making a plan of action with the medical profession
  • als and school so we are all on the same page
  • being grateful for treatments options and access to the RCH
  • knowing that despite our hardships we acknowledge that many other children may not be as fortunate
  • staying away from people with strong opposing opinions to professionally trained medical practitioners
  • knowing what to do in an emergency situation and having steps to take
  • accepting help (which isn’t easy)
  • having respite
  • accepting what I cannot control
  • giving back where possible to help others on their journey
  • remaining calm
  • having a positive mindset
  • participating in Redkite teleconferences
  • having HOPE
  • having chocolate on hand, a little red wine and NEVER giving up!

- January 2017

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