Our Warriors Who Inspire Us

May 17th is DIPG / DMG Awareness Day!

A day that is starting to get recognised globally, and a day that us parents who’s child has suffered with (or is suffering from) DIPG/DMG would give their own lives to not be a part of! It is so significant to raise awareness of this terrible disease that has claimed the lives of so many beautiful children.

In the past year alone, DIPG/DMG has claimed the lives of Zoe, Piper, Lucy, Ruby, Ryley, Alex, and Ivy. These are just immediate families we know in our small Aussie group. There are of course other beautiful families that are currently in this fight all over Australia, all over the world, knowing eventually the fate of their children. It is truely heart breaking for these families.

They say DIPG/DMG is rare. But when you speak with these families EVERY SINGLE DAY about their PAIN and SUFFERING, I can assure you it does not feel like this disease is rare or uncommon!

RYLEY’S JOURNEY

After 5 heartbreaking years and 10 full rounds of IVF our beautiful son came into this world at the end of 2014.
Our dream came true. A healthy boy. As the years passed he was generally a well child, perhaps slightly behind in all the milestones, but nothing alarming. It all came to him in his own time. I look back at photos now, or remember moments in time and truly hate myself. How did I not see it. I am his mother, what was wrong with me.

No one can tell us when it would have started growing. Doctors suggest 6 months before he was diagnosed, but I believe it had been much earlier. I guess when you have a generally healthy child, life is busy, and you just say to yourself, he is just being silly, he is just pulling a funny face, he is being lazy, he is tired - it’s been a big week, big weekend, big term, big year. Never did I think he had a tumour growing on his brain stem.

At the end on 2021, his year 1 teacher mentioned that he had not done that well in his last term report card. She was not too alarmed, she knew he knew the work, as she had seen him capable of doing it in class, but just didn’t apply himself in the final markings. I knew he could do it too. We always did his homework, did numbers, did reading, so we put it down to him being quiet, shy and too reserved to ask for help. Terry and I decided after Xmas holidays I would drop back a days work, to help him with his school work and be there more for him.

Over the weeks leading up to Xmas he mentioned a few times of having headaches. They seemed to settle with Panadol, but it worried me. He just didn’t seem himself. I had him booked into see the GP on the 23rd of Dec in the afternoon. I was working, but was going to rush out for an hour to take him. He fell asleep on the lounge, I didn’t want to wake him, and I was busy with work. I said to myself I’ll book him back in after Chrissy.

I look back at Christmas Day, it was normal. We woke, opened pressies, had pancakes for breakfast. Ryley received a trampoline from Santa, but didn’t even want to go on it. He just wanted to go back to sleep, which he did for a few hours. We just put it down to him having a few big days, staying up late the night before. But seriously, what kid goes back to sleep on Xmas morning. Why did I not see this as an obvious sign! 🥹

A few weeks past. We had a weekend getaway planned for Noosa. The signs became obvious. Did not want to go on the trampoline, play tennis, go on his scooter. Was holding onto us constantly for balance. Having long sleeps. Most prominent were his eyes. They went cross eyed and he was seeing double.

On the drive home I started Dr googling. A long list of reasons came up. The last one brain tumour. There is no way my boy could have that. That couldn’t happen to us. I couldn’t comprehend that even being a thing. So I focused on the fact he may need glasses, but a awful feeling deep in my gut set in.

The following morning we took him to the local optometrist. He sat in front of some fancy eye machine, doing everything he was asked. We were told to take him to GC emergency ward immediately. I knew, this was not good.

At the counter the triage nurse took one look at him, and escorted us through straight away. When does that ever happen!
A series of doctors came and asked him over and over again touch your nose, follow my finger, squeeze my hand, push with your leg, walk in a straight line etc. They rushed him through for a MRI. He was so brave. Terry sat next to him. I sat in the hall crying. Little did I know what was coming.

They told us he had a 5cm tumour on his brain stem. We would spend the night at GCUH, then be taken by ambulance to QCH the following morning. We didn’t sleep, but kept telling ourself, it’s ok. They will remove it, we will do chemo, we will fight it! It will be ok.

The next morning our treating oncologist we had just met took Terry and I into a small waiting room. Ryley sat in the bed by himself, with a nurse he just met. The doctor got to the point quickly. Your son has Diffused Intrinsic Pontine Glioma DIPG. We cannot operate, for where it is. Chemo does not work on this type of cancer. There is no effective medication or drugs that will help. We can do a biopsy, that may or may not leave him paralysed/a vegetable, but ultimately it will not save his life. Radiation is the only Pallative treatment that may or may not give him a few extra months. After that we suggest you make memories, but rest assured we will not let him be in any pain at the end. WTF!

Our cherished son was going to die. We quit our jobs and dedicated our lives to him. He so bravely did the 6 weeks of radiation every day. His head pinned to a board in a mask and left in a room, with huge machine circling him. Everyday I sat out side that room and cried. Terry held me up. We prayed and begged to god, angels, the universe, anyone to save our boy. Take us instead.

Thankfully the radiation shrunk his tumour by nearly half. Thanks to all the generous donations from our community, we made memories. Lots of them, things I had always imagined we would do with him, we did. I don’t know what the right word is to use, as we slowly witnessed our son die, but we a grateful to get those memories- many families don’t.

As there was only 1 trial available at Ryley’s diagnosis and had not had that much success, for nearly 7 months we purchased a very expensive drug from Germany. The same drug was available on trial in many parts of the western world, but not here and we were not excepted onto any international trials. Who knows wether it gave us any extra time, but we had to fight.

In August Ryley started getting headaches. To the parent of a normal healthy child, this means Panadol, perhaps a virus, cold, fever - not death. To us this meant progression. Our time with our son as we knew him, was coming to an end.
We pushed for a MRI, knowing this was not a good sign. It did not show much tbh, a slight amount of growth, and our oncologist was not that worried. Apart from the head aches, there was no other clinical signs.

Over the next two weeks he declined significantly. We quickly scheduled another round of re-radiation. As he had survived 6 months past his last round, this was allowed, only 17 sessions though.

How horrible to make the decision to put him through it again, hoping it may give him another 3 good months. Also knowing the damage the radiation it’s self was doing to him. If by a miracle he survived the tumour, this would probably eventually take his life any how (or any quality of life).

He completed the radiation at the end of September. As the drug we had been buying from Germany did not seem to be working for him, we switched to the only other trial available. No financial cost to us, but Ryley had to have many blood tests, and either swallow 24 capsules a day or swallow the contents in apple juice. It tasted like toxic poison. He never complained.

The next few months were good, I guess. We did a couple of cruises, had his Birthday and Christmas. At NY’s we went upto Hervey Bay. He had now lost the ability to walk. He was loosing use of his right arm. His speech was slowly getting worse.

We were in Big W up there , one of his fav places on earth. He just wasn’t interested. We wondered through the toys. He pulled me down to the disabled chair he now sat in, and said to me ‘when am I going to be able to walk again mum, I just want to walk’.
I said ‘I don’t know baby, but we’re going to keep fighting this bump and get you strong again’ - knowing very well he would never walk again. Tears rolled down his cheeks ‘I don’t want to be alive anymore mummy’.

Two and half months later he died. I don’t know what is worse, knowing my son has died, and I will never see, hear, smell, touch, hold, kiss him again. That our lives ended when his did… or remembering the suffering he went through in those last couple of months. He lost every ability! Our baby lay there helpless, unable to communicate in anyway, but this awful disease left his mind cognitively intact - he knew everything that was happening to him. DIPG is evil.

We could not help him, parents are supposed to protect their children, but we stood no chance against this deadly cancer. He was our everything and we could not save him.

#Ryleythebrave