Here’s a few excerpts from a diary that I kept during Levi’s treatment. This period coincides with progression and palliative care, the most difficult time for Levi and our family. We stopped asking for MRI results in September 2018, when his tumour began to grow again. Nothing good could come from knowing how big Levi’s cancer was becoming, or which part of his brainstem it was about to smother. We could do naught about any of it. Many of my entries are from a Tuesday – treatment day at Sydney Children’s Hospital.
Tuesday, October 23
We had to stop treatment today as the immunotherapy trial isn’t working. Levi’s cancer is in progression. This is now my least favourite word in the English language, after those other four monsters – Diffuse Intrinsic Pontine Glioma. How do we tell our seven-year-old boy, who’s still so full of life and love, that we tried… but there’s nothing more we can do?
We’re in freefall now, the feeble buffer we had against the demons of this disease is gone. It’s coming for him, whether we’re ready or not.
Wednesday, October 23
In some positive news, Levi’s doctor thinks a new trial may open for Levi in a few weeks. The drug is called ACT001. No actual name, just numbers. We don’t have a few weeks, but we wait.
We’re told to use language with Levi that doesn’t give false hope. “The doctors are trying their best to find some new medicine which might help you,” we say. “What if they can’t?” he asks. The words won’t come.
Tuesday, October 30
Levi’s facial palsy covers his whole left side now. The changes to his appearance affect him at school. A few kids have made comments and it cuts him deeply. He feels different, his demeanour has changed. There’s a sadness in his spirit, a realisation. He just wants to be like everyone else. “Why doesn’t anyone else have the stupid cancer?” he asks. “Why can’t you or dad do the treatment”. I wish more than anything we could, I say, a thousand times over.
Tuesday, November 13
Levi’s left eye only closes halfway now and it’s getting dry, sore and irritated because he’s having trouble blinking. He notices and says his eye looks big and his face looks weird. He hates his wonky smile. I used to try and reassure him that I didn’t notice these changes because I thought I was protecting him from the hurt, but now I realise he just wants validation. I imagine looking in the mirror and seeing these things on my own face, and how terrified I would feel. I tell him how beautiful he is, how scared he must be.
I ask the doctors at the hospital to write down any new symptoms they notice on a piece of paper and show them to me. Levi is so self-conscious about the way he looks that I am desperate to spare him the humiliation of someone telling him to his face that his smile is lopsided or his walk is wobbly.
Sunday, November 25
Levi woke up on Wednesday with headaches and vomiting and spends the rest of the week bedridden. “Headache” seems a grossly inadequate description. This is something else entirely. Beast-like and barbaric, this pain belongs in a different realm, some place that children have no business inhabiting. The agony hits as sudden as a switch and just as quickly it maims him. He screams like a lamb at the slaughter and holds his head in his hands as though trying to contain the torture. The pain makes him vomit and when he vomits the pressure intensifies to a point where no drug can help him. He is utterly, repugnantly alone in these moments, and it’s profoundly disturbing to watch.
We took him to the hospital on Thursday and they ordered an emergency MRI. There doesn’t seem to be much of a change to his tumour but he is very unwell and deteriorates rapidly. We spend a couple of days in hospital and return home to bed. He can’t sit upright or move his head off the pillow lest the suffering starts.
He’s on Endone every four hours and we up the dose to try and give him some relief. He starts to become unsteady on his feet, like his legs are tangled. His speech becomes slow and slurred. He notices and tells me. “I can’t get my words out mummy”.
I move a mattress to the lounge room floor and he lies there each day, watching TV and patting the dog when I bring her over. He’s incapable of anything else. We move his bed into our room at night because getting up is too hard, and we need him close.
Tuesday, 27 November
At the hospital, Levi is so distressed that he won’t let the doctors touch him. We carry him into clinic because he’s so shaky on his feet. He’s overcome with medication and pain and he’s a far cry from the boy we brought in a week ago, walking independently but experiencing some leg pain and numbness. The deterioration is frightening. This time last Tuesday we enjoyed a night out at the soccer with his mates and everything was as it should be. He was only taking one medication and now he’s been prescribed eight. He’s on Osmolax and Lactulose for constipation, Endone for pain, Dexamethasone for symptom control, Acimax to line his stomach against the steroid, Ondansetron for the intense nausea, Panadol because it works with the Endone, and his trial drug. Preparing his meds takes planning and preparation and each day we keep track of what he’s taking and when on an A4 piece of paper. He has a little whinge now and then, but he is so good-natured about it, considering. Considering this shit disease.
Wednesday, 28 November
Steroids. Always the end point for us. When Levi was first diagnosed, we saw the bloated faces of steroid-swollen children lining the newsfeeds of DIPG support group pages. These images scarred me then, and they haunt me now. Because here we are, too. Just like that. We barely have time to stop and take it in. Another moment where you die a little but have to keep on going. Despite the horrors confronting us, many moments do not feel real. My mind keeps trying to process what is happening, but there’s a limit to how far it can bend.
Thursday, 29 November
An OT from the hospital calls and asks if we would like a hospital bed at home for Levi. She can help with other modifications too, such as a seat in the shower, and give Levi a wheelchair. Is there still a chance this could all be happening to someone else?
Levi does his first poo in eight days. His tummy is constantly sore and distended, and it’s rock hard from being backed up for so long. His inability to go to the toilet and the intense discomfort it brings consumes him. I try to imagine not being able to go to the toilet in over a week.
The steroids have changed his mood overnight. He cries often over the slightest insignificance. He is angry, grumpy, irritable. He only wants Ben and me. No one else matters.
Friday, 30 November
Met with Levi’s doctors today to talk about where we wanted Levi to die. At hospital, at home, or at Bear Cottage. They also asked if we would like to donate his tumour to research after his death. I catch a glimpse of a parallel universe, where other people are going about their day, their biggest concern only what they will cook for dinner tonight. Yet here he is in his hospital bed, playing on his iPad with a nurse, while we sit in a room down the hall, preparing for the end of his life.
We are given a wheelchair for Levi so it’s easier for him to get around long distances. He nicknames it Wheeley. He uses it for the first time when we go and pick up Olivia and Archie from school. It’s an emotional moment. His friends are very cute and think it’s a bit of a novelty. He gets overwhelmed after a few minutes and wants to go home.
Tonight, we have six girls sleep over for Olivia’s 10th birthday party.
Tuesday, December 4
Levi’s moods continue to swing. He gets angry with me and physically pushes me away at the hospital when I try to tell him how to use the wheelchair properly.
The grumpiness would be comical, such is his commitment, if it weren’t so tragic. We tread very lightly in case the tears come, because when they do they are hard to stop. His face morphs in disfigurement when he cries because he can’t move half of it.
Wednesday, December 5
Levi received his class award for consistency at the end of year assembly today. We bring him to school in his wheelchair, but park it near the hall because he is desperate to walk on his own. When they call his name, he walks up to the stage, wobbly but triumphant. If only other people knew what it took to take those steps. On the surface, just like any other kid. But he’s taller and braver than any person I know. This. This is what makes me strong.