TOMMY’s Story
Before it all began
Our gorgeous little boy, Thomas (affectionately known as Tommy) was a happy, funny, active, cheeky, and very determined 7-year-old. A child loved beyond anything words could ever explain. A life created after almost 12 months of trying, the missing piece of our puzzle, he completed our little family of four.
It was 2023, Tommy was in year 2 at school at the time. A little boy who loved his family (especially his two mums and his big brother Lachie), he enjoyed being outdoors, spending time at the beach, splashing amongst the waves, and exploring everything nature had to offer. He loved music, he made the most of every opportunity to dance, sing, and beatbox with his brother, and like many kids his age he loved chocolate! Tommy enjoyed spending time with his friends, playing soccer, riding jetskis, boats, motorcycles, and gaming (especially Fortnite and Roblox). His love of the beach and everything jetski’s was a good foundation for his dream to become a lifeguard when he grew up. Little did we know that all of that was about to change. Our world was about to come crashing down on us. Changing our lives forever.
Signs something wasn’t right
Friday 25 August 2023, this was the day that we first noticed something started to change. It was dress up day at school for the book week parade. Tommy dressed up as one of his favourite superheroes at the time, Spider-Man. We received a call before the book parade had even begun, advising us that Tommy had vomited at recess and needed to be picked up from school. This was completely out of the norm for Tommy. He never usually vomited. On the rare occasions when he did get sick it was usually just a quick head cold that he recovered from in no time at all, he never even contracted Covid, despite all of us at home getting it at least once. Tommy told us, “Mummy, I choked on my tiny teddy, I couldn’t breathe, I thought I was going to die”. Thank goodness this was not the case, well not on this day. I was so glad that he vomited, as this helped clear the food from his throat. Whilst many believed he had some kind of virus (which would explain why he vomited that day) we believed there was truth in what Tommy had told us, as he was very rarely sick, however we just thought perhaps his food went down the wrong way. Little did we know there was a sinister reason as to why this occurred. Other than being a bit off his food, his voice a little softer, and acting a little quieter than usual, there were no other alarm bells at this stage. We thought, and were hoping and praying, that this was a once off and nothing to worry about.
Then, almost a week later, on Thursday 31 August, we had a call from his after-school care service, with educators concerned that he had fallen over, which was very unusual for him as he was always so steady on his feet. When I was on the phone to the educator, I clearly recall her saying “Oh no, hold on, he has just had another fall”. Knowing this was unusual and out of the norm, we rushed to collect Tommy and monitored him. He wasn’t himself, he sat there staring into the distance, he was quiet and lethargic. That evening Dani (Tommy’s Mumma D) took him to a local after-hours medical centre, while I sat home trying to reassure his big brother Lachie (and myself) that Tommy will be ok.
I recalled that it wasn’t that long ago that I had noticed Tommy holding his head and gritting his teeth in pain, shortly after he said, “it’s ok now”. He told me he just had a bad headache, but it went away. When I stopped and thought about it, he had complained on and off about headaches, some were severe but only lasted a very short time. He started dribbling every now and then, he had also told us that he felt like something was in his throat at times, however it never impacted his ability to eat and drink despite the time at school that day. We put it down to a throat infection or virus, especially considering his voice sounded strange, almost like he was short of breath and quite nasally, and he had only just recently recovered from a mild case of chickenpox. Things just didn’t add up though, I didn’t want to think like this, I didn’t want to believe that my son was sick with anything worse than a common cold or virus.
Seeking medical advice
At the doctors surgery, Dani discussed the changes we had noticed in Tommy’s speech, explaining that he had had two falls at his after-school care service, that he had choked and vomited at school the week prior, he had been suffering from the occasional headache, including thunderclap like headaches that came on severely and only lasted a short time, and had recently recovered from a mild case of chicken pox (from late June). The doctor examined Tommy and put simply, explained there was nothing obvious that could be causing these symptoms and suggested we take Tommy for a blood test to find out more.
On Friday 1 September, we took Tommy back to the medical centre for a blood test, he was extremely distressed when he attempted to lie back, complaining of dizzy spells. I held Tommy tight, and reassured him things will be ok, I picked him up and sat him down in my lap, resting his head back into my chest, so he didn’t have to lie down completely flat, helping him to feel safe in mommy’s arms. Bloods were taken and we were advised to wait a couple of days for results. As many parents do, we turned to doctor google, and started researching Tommy’s symptoms. I remember telling myself, ‘do not trust the internet, trust the doctor and wait to see what the test results say’, as everything I was reading linked to brain tumours. Later that day, we noticed he was a bit bloated, and hadn’t had a bowel movement for almost a week, we tried tummy massages and even resorted to glycerin suppositories as other oral medications hadn’t worked. Tommy was tired, and off his food, we even offered the foods he loved at dinner, including a cheeseburger, he wasn’t at all interested. Again, we hoped and prayed that perhaps he was feeling like this because he was so constipated. However, even after providing some relief in that department, symptoms didn’t improve. We kept reassuring ourselves that perhaps he had a cold, or a virus of some kind, all kids get sick every now and then. Yet, my mind was working overtime and I kept having horrible thoughts that it was something more. Something didn’t feel right.
It was Father’s Day weekend, on Sunday 3 September, we had family over celebrating my brother’s recent birthday and ‘Poppy’s day’, as our boys referred to it as. Tommy didn’t seem to be getting any better, we noticed his voice became even more laboured, he was quiet and not overly interested in doing things he would usually do. That day I noticed that his right eye didn’t seem right, almost as though something was irritating it, noticing his eye was a little red, and he was squinting at times. Something was seriously wrong with our little boy. It was at this point I panicked. I felt sick in my stomach, I was now starting to believe what I had initially thought, and things I had read. I had a very strange feeling something neurological and extremely serious was wrong with our little boy. I had a strange feeling in my heart, something powerful, something I cannot explain, it was almost like I knew I needed to start preparing for the worst.
A Mothers instinct
Monday 4 September could not have come sooner, we took Tommy back to the medical centre for a follow up and blood test results, his blood work came back normal, aside from being low in Iron. This is basically what we were told. I reminded the doctor of all Thomas’s symptoms; falling over, feeling dizzy, having what appeared to be thunderclap like headaches that only lasted a short time, labored and slurred speech, saying he felt as though something was stuck in his throat, and vomiting after choking on his food at school, the dribbling, being constipated, and extremely lethargic and off his food. All we were told was that he was low in Iron and to take him home to rest. At this stage, I wasn’t taking no for an answer, further tests needed to be done. Sadly, I knew in my heart something was very wrong and I stood there and said; “In all due respect, I am not a doctor, but I know my son, and something is not right, this has to be neurological, he has either had a stroke, or has a brain tumour!” At this stage, we were sent with a letter to our local hospital.
Despite feeling overwhelmed with emotions and fear, as we arrived at the hospital and sat together in the waiting room, I still recall that feeling of relief as I saw the triage nurse, as she was a nurse who used to work at our regular family medical centre, which had since closed down, and she remembered Tommy. As soon as she did his observations and heard him speak, we were straight though to see a doctor. Tommy sat through more tests and was soon being wheeled down the corridor for a CT scan. The CT scan showed a lesion on Tommy’s brain. Tommy was then rushed in for an MRI which confirmed the lesion and the team appeared almost reluctant to give us more information, indicating however that there did appear to be a tumour on or near the pons area in our little boys brain. At this stage we had no idea what this all meant, or how serious this was. That evening, due to the sedation from his MRI and continual dribbling, he had difficulty breathing when lying on his back and momentarily stopped breathing. The doctors knew Tommy needed specialist care, he was transferred to Westmead Children’s hospital during the early hours of the morning on Tuesday 5 September 2023.
That horrible C word…
It was almost like time stood still, we felt numb, all that mattered at this stage was being there for our boys, and making sure Tommy had his mums by his side throughout his journey. At Westmead, there were more tests and scans, including another MRI. With no sedation he lay as still as he could, but the fear was obvious, you could see it in his eyes – we were all terrified, hoping and praying for the best but fearing the worst. Tommy felt some comfort with mum sitting there at his feet reassuring him, holding his hands when within reach and his feet when they moved his little body further into the machine. He always felt safest in mummy’s arms. We met so many doctors and nurses, including the neurosurgeon team, who would soon be performing a biopsy to confirm Tommy’s diagnosis. We were told things weren’t great, that it does appear to be a cancerous tumour, and would know more when we receive the biopsy results.
Tommy also needed to have a swallow test, which confirmed that thin fluids were going down the wrong way, impacted by the tumour pushing on his nerves. As such, we were advised he would need to use thickener in his fluids. It was a constant battle to get Tommy to stay hydrated, he loved drinking water and couldn’t tolerate the texture and taste of the new thickened fluids. Tommy was also prescribed Dexamethasone, a type of steroid, an important medication to help reduce inflammation, however it came with nasty side effects. Tommys mood completely changed, in any day he would go from being happy, giggling at everything, to sad, often crying uncontrollably, and then feelings of anger and aggression. So many emotions for such a little kid to try and cope with. On a positive note, a visit from his big brother always cheered him up, Tommy was overcome with emotions the first day Lachie visited him at Westmead, he burst into tears, and they came together in the warmest embrace I had ever seen. Like all brothers, they would argue, but they also loved each other fiercely, and protected each other from anything life threw at them. This wasn’t just a battle for Tommy, his brother felt every bit of his pain, we all did.
9 September was biopsy day. Our little boy lay on his big hospital bed, petrified, tears rolling down his face. I lost count of how many cuddles we had, making the most of each and every opportunity to show our gorgeous boy a love like no other. Tommy cuddled his Gracie dog teddy so tight, the doctors even gave him another beautiful soft toy, a dog to cuddle and keep him safe. I also remember trying to hide the words ‘Kids Cancer Project’ that was stitched on the paw. The last thing we wanted him to read was the word ‘Cancer’, no one was prepared for that. After a few hours Tommy was out of surgery and back in the ward recovering. The next day Tommy was sent for a CT scan, ensuring everything was ok post op, confirming that there was no bleeding, swelling, or other complications from the biopsy surgery. Then came the anxious wait, whilst it was only days it felt like months! We made the most of the hospital days with Tom, enjoying delicious chocolate treats from the café, visits from his loved ones, gaming with his friends, we did anything we could to make him laugh. His smile was amazing and would light up the room. The sound of his giggle was enough to make anyone’s heart feel happy.
Official day of diagnosiS
Tommy’s biopsy came back a few days later, on 12 September, another day we will never forget! A day that really hit home, that confirmed we are all on borrowed time. It is forever marked in our minds – our hearts instantly filled with so much pain. The neurosurgeon asked us to join him in a quiet room down the hall, having to leave our child’s side, we knew our hearts were about to shatter. The biopsy results confirmed our worst fears, with the heartbreaking diagnosis that our son had the deadliest form of paediatric brain tumours; DIPG / DMG. A cancer with such limited funding compared to other cancers, a cancer they call ‘rare’ in our country as it affects a small number of children, around 25 children a year, a cancer that has no real treatments, no option for surgery to try and remove part or all of the tumour due to the significant risks involved, and no cure!
Our hearts sank, we were flooded with so many emotions, tears streamed down our face as we sat there, all these horrible thoughts filled our heads, and we asked “why? What caused it? what are our options for treatment? will he survive? how much time does he have?”. We were beyond broken, we felt numb, crushed to the core. It was a time in my life I wish I was proven wrong, I wish I was so far from the truth, but everything I read was textbook for DIPG / DMG. Based on results from the frantic online research, I knew our son had a minimal chance of survival, we needed to hope and pray for a miracle. In reality we knew this was a death sentence, but as loving parents, we couldn’t give up, we knew miracles could happen and were hoping one would save our boy from this horrible fate.
HOME TIME
On 13 September, after more than a week in hospital, it was time to go home. We were told to focus on making memories. Even before we were advised by hospital staff, we did our research, we knew there is no cure and the only treatment available is palliative radiation, which may just give Tommy some more time. Tommy was so excited to be heading home, he couldn’t wait to see the dogs, Will (Labrador) and Mallee (his favourite little Groodle), to play his PlayStation and X-box, to relax in the spa, to draw, colour, and paint, and just be at home in his safe place with his mums and big brother, with regular visits from extended family and friends. On 14 September, he couldn’t wait to walk up to school, with his little best friend and neighbour by his side, to say hello to everyone he had missed. He was too tired to stay at school, so back home for a spa and visit from his aunty and newest little cousin, baby Cooper.
Time to start palliative radiation
Tommy soon commenced 30 rounds of radiation, to be completed over a 6-week period, his first day of session was on 18 September – his big brothers 11th birthday. Tommy lay there, strapped to the high radiation table by the mask covering his face, looking nervous and scared, reluctant to let our hands go as we needed to leave the room for treatment to begin. As the days went on, his anxiety grew worse, he started becoming more emotional, scared and nervous of having radiation. He felt dizzy every time he lay his head flat, and fearful of falling off the radiation table. I felt lost and absolutely useless, not being able to be there next to him, to cuddle and reassure him – we could hear him screaming “I’m going to die! please don’t let me die”. He cuddled his Gracie dog, and the warmth and comfort of the heated blanket helped a little. The radiation oncology team were also amazing, they did so much to try and calm him down, to successfully complete the full round of radiation without sedation. The team told jokes, performed count downs, and even offered to play a quick game on the Nintendo Switch if he could lie still for the last few minutes.
Tommy’s determination and resilience was nothing short of amazing. Some days were harder than others, as the steroids continued Tommy gained weight and his face was so tight in the mask, so much so that he would come out with imprints over his face. Throughout radiation and his battle with DIPG, the dosage of dexamethasone was continually reviewed and altered depending on his symptoms. The one thing Tommy was happy about was being taken off thickened fluids and being able to drink water once again. It was the small things that often meant the most. He would also smile every time he placed a spiderman sticker on his radiation chart, counting down the days of radiation treatment he had left.
Love and support from family, friends and our Community
Our local community soon heard about Tommy’s battle. A Go Fund Me Page was set up by friends, with messages of love and support flooding in. I recall my best friend saying; “I cannot give you what I wish I could – a cure, so this is something I can do to help”. It gave us that extra strength we all needed at the time. Tommy was very excited that we had a surprise visit from our closest friend family, with exciting gifts for both Lachie and Tom, an iPad each (a kind gift purchased thanks to community fundraising efforts). A way to have fun, connect, and stay in touch and message friends when he was unable to attend school, or stuck in hospital (with kids messenger).
Tommy’s favourite footy team, the Penrith Panthers, made a special visit to our home, after a friend had contacted Tyrone Peachy and shared Tommy’s story. Nathan Cleary was one of Tommy’s favourite players, and his idol. Before Tommy got sick, he would play footy with his brother in the yard, and Tommy would always be Cleary, commentating as he ran through for the try! Meeting Tommys idol Nathan Cleary would have made his dream come true, but it was sadly subdued by the steroids that he was taking. Despite this, he really did treasure the experience.
Tommy showed a bit of excited in the days and weeks ahead, starting to think that maybe he was famous especially after a photographer from the Daily Telegraph came and did a photo shot for a story. A wonderful friend helped to create some Team Tommy shirts and jumpers, to show our support and help raise awareness. We received so many cards, letters of love and support. There were often little gifts and presents from the wonderful Teachers and other kids at Tommy’s school, messages from all his friends and classmates. We had calls from individuals and company’s offering photo sessions, a few nights’ accommodation to get away from things and spend time together, we had people cooking for us, cleaning our home, dropping off food and sweet treats, even presents and toys for the boys to keep them entertained during this horrible journey. The kids always got excited when they received a surprise package from Starlight! We were overwhelmed with the love and support we received, despite wanting to give all of it back (and more) in exchange for hope of improved treatments, even better – a cure!
There were numerous fundraiser events and BBQ’s for our gorgeous boy, including ones arranged by friends and the local school our boys attended. There was even a DIPG awareness walk around our beautiful Nepean River, arranged by a beautiful friend, in honour of Tommy and all children who are battling or have lost their battle to this awful disease. We all wore our ‘Team Tommy DIPG Warrior’ shirts and hoodies, to help encourage conversation and create more understanding and awareness about this horrible type of cancer. The turnout was nothing short of phenomenal. A very special and emotional day.
Over the October long weekend, we noticed that Tommy’s wound from the biopsy appeared to be leaking. Worried that there was an infection or something else happening we went back to the hospital to find that he was leaking cerebrospinal fluid. The neurosurgeon who had undertaken his biopsy surgery restitched his wound and Tommy had to spend another few days in hospital for observation and to undergo a course of antibiotics. Although Tom preferred to take the antibiotics over having blood taken (as he hated needles), he quickly began to get over being woken up in the middle of the night to take the oral antibiotics.
Starlight Wish – special time together with familY
Towards the end of October and into early November when Tommy continued his last session of radiation treatment, combined with a reduction in the Dexamethasone, it gave Thomas some of his function back. His speech started to improve, we missed his little voice so much, the opportunity to hear “I love you Mum” again is something we will never forget! Tommy seemed to have a little more energy at times, and he started to lose some of the weight he gained from the steroids. We watched him even go outside and play small games of soccer with his brother, and bounce on the trampoline. Two things he loved to do before he got sick. Something we never thought we’d see again. Treasured moments in time. We were so grateful, but we knew we were on borrowed time, we knew it would all be cruelly ripped away again from him soon enough.
We started to take a step back from work, taking leave where we could, we knew we needed to focus on being there for both our boys, to spend as much time together as we could, creating memories that last a lifetime. In November, Tommy received his Starlight Wish, and we had a wonderful trip to Daydream Island, where he was able to explore the Whitsundays on a jetski, play and swim in the beautiful pool, and enjoy a buffet breakfast daily, three things he loved! We were so grateful for this time together as a family, particularly given Tommy was still able to use his legs at this stage. As time went on, we took the opportunity for quick weekends away and trips to some of Tommys favourite places.
Renewed hope and possibility for a trial
After speaking with Tommy’s wonderful Oncologist at Westmead Children’s we were advised that all trials at Westmead were closed, or on hold. Fear, sadness, and anger all crept in as we asked what other options we had to help our gorgeous boy. There was a CAR-T cell trial (known as Levi’s Catch) open at Randwick, based on everything we had read, this may have given him the best chance at survival, or at least a chance at prolonging his life and trying to maintain some kind of quality of life prior to disease progression. Confronting thoughts again filled our minds, what if this doesn’t help? What if it makes him worse? Overall, we were hopeful, it was really our only option, we filled out the forms, Tommy was on the waiting list, things were moving forward well.
On the 27 November Thomas had another MRI to see what effects the radiation had, as well as forming part of the pre-work for the CAR-T cell trial. By this time we noticed Toms speech starting to decline again and we were told that it could have been a side effect of the radiation, as the swelling could be impacting his speech. We were told that it could last a few weeks or more, but there was also a chance it wouldn’t improve. The MRI results this time round gave us hope, showing that the radiation had helped to reduce the size of his tumour. Finally, some good news, especially considering we were told to prepare that it may not help to reduce the tumour. Apparently, this type of tumour is so aggressive that if palliative radiation treatment even kept the tumour at bay this was a good result.
On Monday 4 December, we sat with Tommy at Randwick Children’s hospital for hours, almost 14 hours to be precise! Waiting patiently for a bed and operating theatre so he could have his Vas Cath procedure. That night, Tommy was prepped for surgery to have the lines put in, in preparation for the apheresis procedure the next day, where healthy T cells will be collected. The next day, the apheresis was completed successfully, the doctor was surprised at how many cells were collected. Then came the anxious wait to hear if the lab in Adelaide could successfully modify his T cells. We were told that, pending the successful completion of Tommys engineered cells, the next available time Tom could have the procedure was in early January. Another anxious wait ahead.
Special milestones – Christmas and New Years
Christmas soon arrived, feeling so happy and blessed to have Tommy with us. We celebrated Christmas and New Years with family and friends, at the time we didn’t know if these would be his last. Based on all the research we were so hopeful that this trial might give Tommy the fighting chance he deserves, even just to keep his tumour at bay. We still wanted to make it extra special, Tommy received so many wonderful gifts, including a remote-control speed boat from Santa, and his very own Jetski, thanks to the money raised by family, friends and our wider community. We took the opportunity to spend time together, going away on holidays in early January, enjoying time with our boys and friends who were more like family.
As the New Year approached, we knew how important it was to be together with our closest family and friends, as we said goodbye to a very sad year, hoping for renewed hope and miracles in 2024, knowing that the reality was in preparing for much harder and more painful year ahead. It was important to be surrounded by those who loved us most, an opportunity to create memories we would cherish forevermore. We organised for a small New Years party at home. The kids enjoyed playing together, as the adults drowned our sorrows. There were plenty of laughs, followed by plenty of tears. We welcomed the New Year with so many hugs and kisses, at our home, a place that held so many wonderful memories, with such sad ones to come. Holding those we never want to say goodbye to.
Holiday time
In January we packed the car, and Tommy’s fury friend Malle, and headed down the South Coast to another one of his favourite places, Lake Tabourie. An opportunity to enjoy the beautiful beach, the lake, and the natural surroundings, with the company of some of our best friends. I was so happy that we were able to help him get into his beloved kayak, and with a little assistance, he was able to enjoy his time on the water. He sat at the beach and built sandcastles and splashed around in the lake with his brother. Tommy loved showing his friends how fast his new remote-control speedboat went. When he got tired, he loved taking a break and cuddling up with his dog Mallee.
The emotional rollercoaster
During the January holidays we were also anxiously awaiting an update on when Tom would be admitted to Randwick Children’s Hospital for the next stage of the trial, where he would receive his ‘fighter cells’. As he hated hospitals and was so scared about any medical procedure, we had explained the procedure to Tom referencing terms he was familiar with from Roblox, saying that his cells would be transformed into magical fighter cells with diamond and emerald armor, to attack the silly cancer cells. We then saw that Tommy at times seemed excited, anxiously awaiting his cell infusion. Often Tommy would ask “When am I getting my cells back?”
When we contacted the hospital, we were told ‘’There’s no rush, as another child is in front of Tommy” we were taken back, unsure why, as we were told Tommy would be the next child in Australia to take part in the revolutionary trial. In saying this, we also know that every life matters, especially when it comes to children, so there was obviously a reason this child was put in before Tommy. This allowed us to extend our holiday, which we were so grateful for, however it also pushed back dates for his next MRI and clinical follow up. The emotional rollercoaster continued.
The date for his next MRI soon approached, January 24, 2024. Tommy lay so still in the machine, for what felt like hours, with mum by his side, comforting and reassuring him. The doctor contacted us with results on 30 January, results from his latest MRI confirmed our worst fears, being told our beautiful boy may be in progression, with results showing the tumour had spread, and a small lesion had now formed on his pineal gland. Doctors then told us that it could be pseudo progression, and perhaps the trial wasn’t off the cards. That little bit of hope restored, soon to be taken away all over again. Definitely not the news we were hoping for. On 31 January, Tom returned to hospital for an Echo and ECG, I remember holding his hand as the scans were performed, hoping everything came back clear – thank goodness, the results from these tests were great! Our Tommy boy had a very strong and healthy heart.
A special milestone – Tommy turns 8
On 2 February 2024, Tommy celebrated his 8th birthday, surrounded by family and some of his closest friends. He enjoyed all the things he loved, including a day out on the water; we took out the jetski, and even hired a boat so we could cruise around Berowra Waters and take in all the natural beauty. Tommy was gifted with a nice new TV to watch all his favourite shows with his mums and big brother, and a larger screen to see better when playing his new PlayStation games. He even got a pet fish, a blue Siamese Fighting Fish which he lovingly named Blueberry Muffin.
We tried as best we could to keep life somewhat normal for Tommy. He even started year 3 back at school. Mumma D and Mumma A would accompany him, pushing him in his wheelchair and holding his hand as he walked to sit on his chair at his desk. We needed to park his wheelchair in the foyer area – he was so embarrassed for people to see him in his wheelchair at first. After some time, and plenty of reassurance and kind words from his teachers, parents and kids, he soon realised that he wasn’t defined by his wheelchair, or any other disability he suffered as a result of this horrible cancer. He was loved and appreciated because of who he was, and all the kids were so excited to see him back at school. Too exhausted to stay the full day, he transitioned back slowly, often staying only 1 to 2 hours, which eventually turned into half days.
Family first, making memories
We continued to make the most of the days ahead, whatever Tom wanted to do (within reason of course), going out for lunch, a day out on the jetski, day trips, play dates with his mates, family movie days. He especially loved going out for chocolate gelato by the river. We made the most of every opportunity to arrange little holidays with family and friends.
We were even lucky enough to have a chance to stay at the Camp Quality home at Salamander Bay, a beautiful little piece of paradise that we all thoroughly enjoyed. Often though, Tom just wanted to stay at home, enjoy the comforts and peace and quiet in his ‘safe place’.
More tests, more hospital appointments
Another month passed, 6 March arrived, time for his next MRI. Holding his little hand as he moved into the MRI machine, with no sedation, staying so very still like the amazing little warrior he was. Then another anxious wait for the results. Tragically, we soon realised that the trial we were so hopeful for may never eventuate for Tom. We were told that Thomas was no longer eligible due to progression. His latest MRI showed that his tumour had grown and spread to his pineal gland, they no longer called the second spot a lesion, and referred to this a second tumour. 8 March was a day we will never forget, on this day Tommys Oncologist delivered the news no parent ever wants to hear, both masses were solid, the initial tumour on his pons had spread and so too had the one in the pineal gland. It was confirmed that what they had thought and hoped was pseudo progression, was in fact full progression. Tommy’s cancer continued to grow and spread. We still weren’t about to give up anytime soon.
On the 12 March we met with the Oncology team at Randwick, with Tommy’s wonderful Oncologist and nurse from The Children’s Hospital at Westmead joining us online, to discuss why Tom was ineligible for the trial, and to explore what other options would be possible. The amount of medical information exchanged was overwhelming, so much specialist knowledge, so many terms we didn’t quite understand, so many possibilities, the question was, what was available here and now in Australia?! Sadly, there was nothing open and available, only hope that something may soon open up. A first word Country, the ‘lucky country’ yet as parents of a terminally ill child, we had no options, no real treatment plan, hope was fading, and our boy continued to decline. We sat there feeling helpless, utterly useless, with thoughts that we may soon need to watch our son die. A thought I couldn’t fathom.
Making memories
We tried to stay strong, it was important that we create the best possible life for Tommy despite the horrible hand he was dealt. We continued to try and make as many memories as possible, time with family and friends, going out for a treat, enjoying a swim and splash in the waves, little holidays away somewhere nice and relaxing, and just being present in the moment with our boys. There was even a trip to the zoo, and an experience with the cute little meerkats.
Upon hearing of Tommy’s love of soccer, and a recent spate of bad news, our Palliative Care Social Worker contacted the team at Starlight, and they organised for our family to attend the Sydney FC v’s Central Coast Mariners game on 30 March. He felt so special, he got to meet some of the Sydney FC players and got to go out in the middle of the field before kickoff and flip the game coin. Tom didn’t have much strength in his arms and was hesitant to do it but knowing that Mumma D was going out with him, and he wouldn’t be alone he relaxed and ended up enjoying the experience and was able to even keep the coin. His big brother was also able to be involved with presenting the teams with the match ball before Thomas went out on the field. The only thing that topped this for Tommy, was Easter Sunday the next day, the only day that chocolate is allowed for breakfast! He loved chocolate, and this year the Easter Bunny was extremely generous.
Enduring strength to continue the fight
During early April, Tommy continued to decline, he was no longer able to move by himself around the home for short distances. Daily routines like going to the bathroom and brushing his teeth required mums to carry him and hold him steady whilst assisting him. He still chose to go to school some days, even if it was just for a quick visit, to eat recess or lunch with his mates. As time progresses Tommy was soon unable to get out of his wheelchair and sit in the chair at his desk like the other students.
In late April Tommy started experiencing some incontinence issues and more frequent constipation. It was one thing after another, yet he never complained! Tommy became permanently confined to a wheelchair, losing his ability to walk, or even stand on his legs for any short period, he lost his ability to talk, then his ability to feed himself. Things kept being stolen from our gorgeous boy, as the days and weeks went on, he became more tired, uninterested in everything he once loved, but we found a way to continue to communicate, through hand signals, the use of his iPad, and writing things down when he had the strength and was still able to move his right hand, after he lost this function, we relied on blinking. Soon however, even keeping his eyes open was a struggle.
The rough road ahead, desperate times
As the beginning of May approached, it would mark six months since the completion of Tommy’s initial radiation treatment, meaning it was time for his next MRI. What would be his last ever MRI, and the results were heartbreaking. His oncologist was contacted by the medical team who performed the MRI, concerned by what they had seen. Tommy’s tumour had spread even more, including down his spine. He was admitted to hospital with significant swelling on his brain, initially considering inserting a shunt. The Neurosurgeon advised against this due to risks, and instead his Dex was increased. 3 May marked the date of irradiation, this time, a higher dose, but only one single round. That was it, we were told (in not so many words) to spend time together, as it could be a matter of weeks, possibly months if irradiation works. That evening, after a two-night stay at Westmead Children’s, Tommy came home. We knew it was time to make him comfortable at home, in his safe place, surrounded by those who love him most.
We continued to research, relying on information available online, and any advice other parents of kids with DIPG were willing to share. In doing so we found a company in Germany who could supply a drug similar to ONC201, however in order to prescribe the drug, the need something in writing from a medical practitioner to confirm that there was no way of obtaining ONC201 from the biopharmaceutical company. We needed to go back and ask Tommy’s Oncologist to again try and obtain drug on compassionate grounds or via the expanded access program. This time, through expanded access, we were successful, sadly though, once we finally received the medication in the middle of May, the dosage was so low (way below the recommended dosage for his weight) and Tommy was well into progression. It was all a case of too little, too late.
Tommys dream of becoming a lifeguard changed at the start of the year, since being diagnosed with DIPG he was inspired to become a doctor, to help other children who were sick, especially those who had cancer like he did. How do you tell your child, your youngest child, your baby, that neither of these dreams would ever become a reality? How do you contemplate the gut-wrenching heartache, the emotional pain, sadness and despair in thinking of ways to help your child prepare for end of life? No one wants to tell their child they are dying, however it was also important to us that Tommy knew that it was ok to let go when the suffering became too much. Yet, no one was giving up, we all had to keep fighting, despite what this cruel word threw at us.
Tommys love of water and music live on
Three things he never lost interest in, were hot baths with mum, especially with a colourful and nice smelling bath bomb, having a warm spa outside with his mums and brother, and his weekly hydro sessions each Tuesday at Westmead Children’s. We would often have a hydro pool party and all join Tommy in the pool, even Lachie took some Tuesdays off school as he loved spending time with Tommy at hydro. Tommy looked forward to this every week. The team would play all his favourite songs from artists including; Eminem, Teddy Swims, and Lil Jon to name a few. Tommy seemed to love experiencing the weightlessness of the water on his little body as he walked and moved his legs so slowly through the water with some help and guidance.
I can only imagine that our beautiful boy must have sensed a feeling of freedom with the ability to move his legs in the water, the simple things in life many of us take for granted brought him so much joy and happiness. His body was failing him, he was being robbed of his freedom, the ability to be independent, the ability to move and walk. All of which he took in his stride, he never complained (except when he needed to have thickened fluids due to the tumour affecting his swallow). He loved life’s simple pleasures, even having the ability to simply drink a nice cold glass of water taken away, life was hard, but Tommy continued to fight, took it all in his stride and always smiled and laughed. A beautiful happy little soul. Despite all his struggles, he still agreed to have his mums take him up to the school to enjoy an iceblock with all his school friends on 26 June. A date that would soon mark his last ever day at school.
Palliative end of life care
As the disease progressed Tommy required 24/7 care, we were Tommy’s mums and his carers. I wouldn’t have had it any other way, he felt safe and comfortable around us, and this was the least we could do to help our little boy. In the middle of June, the team at Westmead arranged for a hospital bed to be set up at home. We had the bed placed next to the couch in our back lounge room so we could all be together. Even his beloved Mallee would sleep next to him and watch over him during the day.
On Sunday 30 June, decerebrate posturing began. I recall taking Tommy to relax in the spa, as I lifted him up to carry him to the spa he started posturing. This continued as he lay in my arms. I knew he didn’t have much time left. I sat cuddling my little boy in complete silence, taking in every breathe, every touch, tears running down my face as I thought of what’s to come. His breathing had become irregular, often heavy and rattly, occasionally pausing in between breaths. By this stage Tommy had gone off his food a bit and following the episodes of posturing his arms and legs would begin to shake. On this day, I knew it was time, I needed to talk to him about Heaven, but I still didn’t want him to lose hope, as strange as that sounds. Explaining that Heaven must be a beautiful place, as it has so many special people already there, we told Tommy that that if he gets too tired and needs to rest and be free – that’s ok, reminding him that he will be loved wherever he goes.
The next day, the palliative care team came out to visit and place a subcutaneous line in Tommy’s arm, a way for us to provide medication and pain relief, including morphine and midazolam to help with his breathing and seizures, and make him more comfortable. Tommy was now completely trapped in his own body, unable to cuddle us properly, unable to sit up unattended or without support, unable to play games, use his iPad, to write or draw, to feed himself, struggling to swallow, he had already lost the ability to move his limbs, and his voice gone forever. His smile was the last to go, along with his ability to eat, drink, and eventually to breathe. DIPG / DMG is a ticking time bomb, we knew time was running out.
The worst day of our lives, time to say goodbye
Our gorgeous little boy, Tommy, forever 8. Tommy passed at home on Wednesday 3 July, he took his last breath at 4:49am, with his mums and brother right by his side, holding his hands, reminding him just how much we love him, and giving him endless cuddles, wishing we could hold him forever. Our little DIPG Warrior fought so very hard, for 10 months. We are grateful we had this time with him, but seeing our child suffer, seeing so much taken away from a once happy, active and loving child, having no available trials, no easily accessible medications in Australia to at least try and assist, hearing him cry because he is scared, seeing him miss out on so much, this will all haunt me for the rest of my life. Something needs to change. No child deserves this!
We kept Tommy at home for a few hours after he passed, a chance to hold him, kiss him, and say our final goodbyes, not wanting to let him go, but also knowing time was of the essence as we agreed to donate the tissue from his tumour for cancer research. Not a moment goes by that we don’t think of him. Life is so different now, Lachie struggles to cope, he is sad and angry at the world, much like we are. However, we also know how much Tommy didn’t like seeing us sad, it would always make his heart sad if we cried. I use this as my strength, I hear his little voice saying, “it’ll be ok Mummy”. We now have to live for Tommy, to continue his legacy, to help fight for every child who is diagnosed with cancer, particularly a DIPG / DMG brain tumours. The days are hard and painful, the nights even more so, we are trying to move forward without a massive piece of our hearts. We will forever advocate for a cure, for more funding, more trials, more hope! Our kids deserve a chance, our kids deserve to live. No child should die from cancer. Every child’s life should matter!
Like all grieving parents, sadly we now say good morning and good night to photographs, we watch old videos, we sit and stare at photographs of our old lives, of our gorgeous little boy, of two very loved brothers playing happily together. I often look up to the sky, I feel his presence in the stars, the warmth of the sunshine, the soft gentle breeze, the birds that fly by, the butterflies and dragonflies. Everything reminds me of him, reminds me of a love like no other, and sadly such a significant loss. Our lives will never be the same.
