Harvey’s Journey Through Pain, Hospitals, and the Fragile Sparks of Hope

Origin stories rarely arrive with warnings.

In 2020, Harvey woke one morning and could not walk.

His mother felt the floor vanish beneath her feet.

She bundled him into the car and drove to the emergency department.

They gave him a big dose of Panadol.

Miraculously, he stood again.

He walked as if the scare had been a strange dream.

His mother tried to believe it was over.

Weeks slipped by, and a cold found him.

Harvey had always been a well child.

But this time the sickness clung like a shadow that would not let go.

Fevers came.

Fatigue settled into his bones.

His eyes lost their usual sparkle.

She tried to book his usual doctor after a month.

Covid rules slammed the door.

Because he had not been seen in over a year, they refused.

She dialed another practice and argued with the receptionist through a knot in her throat.

A reluctant phone appointment was offered.

She wanted a real exam, but she took what she could get.

An hour after the scheduled time, no one had called.

She called back.

A different receptionist answered with kindness.

“It sounds like he should be seen in person,” the woman said.

“Would you mind seeing another doctor, and can you get here in thirty minutes?”

She would have flown to make it in ten.

They were ushered to the back garden area because it was Covid time.

The doctor came out in head-to-toe protective gear like a hazmat suit.

A Covid swab.

A follow-up appointment.

A thin thread of reassurance.

The doctor saw Harvey several more times.

She suspected bronchitis.

She prescribed steroids.

Harvey improved.

When the steroids stopped, he fell hard.

This time the fall felt deeper, darker, wrong.

At the grocery store, he asked to ride in the trolley.

His mother said he could walk.

He looked up and said, “But it hurts when I breathe.”

Her heart sank like a stone thrown in deep water.

She called the practice and asked for any doctor.

She did not care who.

He needed to be seen.

Harvey had bruises from his one-year-old sister’s playful hands.

His mother feared someone would think the worst.

She told the doctor.

She showed the non-blanching rash, the petechiae that did not fade.

The doctor’s face grew careful.

He asked a colleague to come in.

They studied the rash together.

He called ED and said, “We’ll be up soon.”

He stayed calm for the mother who could not breathe through the rising panic.

“He looks too well for meningitis or meningococcal,” he said gently.

“But I want bloods at the hospital.”

She thinks now they already suspected.

They protected her from drowning in fear before the test could speak.

The numbers returned with the force of a verdict.

White cell count one hundred seventeen.

Normal four point five to eleven.

This was leukemia.

The word split the air.

It sliced through the thin membrane of denial and left everything raw.

There are days that fold neatly into memory.

This was not one of them.

This became the day the world learned a new language.

The week that followed scraped her soul.

She found a lump on Harvey’s back.

Her usual doctor could not see him soon.

She went to another practice and a GP they had never met.

Kindness met them at the door.

The GP sent them for an ultrasound without her having to beg.

She drove to three radiology clinics to find the fastest appointment.

The next day the phone rang.

“Come in within forty minutes to discuss results.”

She cried.

Harvey cried.

“Leukaemia cutis,” they said.

They fell apart in the carpark.

She knelt on the ground as if gravity had doubled.

“I can’t believe I didn’t even make it to my birthday,” he sobbed.

A child should not hold survival as a birthday wish.

“I don’t want to leave the cats and the rabbits,” he whispered.

They cried the whole way home.

Then began the longest of long weekends.

She aged ten years in three days.

Sleep fluttered at the edges and refused to land.

Tears came in waves.

She is the kind of person who does not want to burden others.

She waits for facts before she lets fear speak.

She holds her storms inside her ribcage.

She spares the world when she can.

But love does not always fit into quiet.

They traveled to Sydney yesterday.

Bloods again.

Another ultrasound.

The lump did not look like leukaemia cutis.

The bloods were normal.

For now, they watch and they wait.

Three weeks until repeat bloods.

A strong team stands ready by the phone if anything changes.

She breathes.

She learns what living between results feels like.

She learns how hope is a door you keep holding open, even when wind keeps trying to slam it shut.

From this pressure she took a vow.

Live a life without regret.

Childhood cancer is often a lifetime of worry and anxiety and stress.

She cannot redraw the path.

But she can light it for the families who come after.

Sharing their story might soften the ground for the next child.

Sharing might shake loose the funding that never seems to reach the children fast enough.

If no one shares, childhood cancer stays underfunded.

If people only see the pretty pictures, they never see the cost.

You are meant to feel something when you see these posts.

That is the point.

People buy art because it moves them.

We need the world to see.

We need the world to move.

Brain Cancer Awareness Month begins today.

They are desperate for cures.

Then the ground shifted again.

The last few days were traumatic and painful and disorienting.

Harvey landed in intensive care.

He was safely sedated so his body could begin to heal.

So much had happened that his mother could not hold the sequence in her mind.

She had to make a REACH call.

She never thought she would.

A nurse stood like a lighthouse beside her and helped her advocate.

Her concerns were validated.

She was grateful beyond words.

They were right to speak.

They were right to fight to be heard.

Many things were wrong.

An impartial party would review the situation.

She wrote a message to the world.

Parents, please advocate for your children.

Keep speaking up.

Eventually someone will hear and help.

Please do not inbox or call, she added.

She was exhausted.

Messages across platforms were overwhelming.

Well wishes and prayers could be left in the thread for moments when she had strength to read.

Updates were hard because the facts kept changing.

Harvey had another brutal twenty-four hours.

Breathing was hard.

Pain management had fallen apart.

He lost an arterial line.

He lost his midline.

He lost his last cannula.

He needed more access because they needed three access points to get by.

They only had his central line.

He needed platelets again.

They were taking too long.

His mother wanted to scream into the ceiling tiles.

On the bright side, after twelve days, there was finally a bowel movement.

A small miracle deserves its own hallelujah.

HHV6 cleared.

He was febrile again.

She prayed there was nothing else brewing.

This child had endured the unimaginable.

His pain medications were sky high.

Unless he was intubated and in a coma he was in pain.

Every wean brought the pain roaring back.

Scans showed air in his abdomen where it should not be.

There was blood in his urine.

CPAP helped him breathe.

The list of TMA symptoms unfurled like a grim inventory.

Petechiae and prolonged bleeding.

Nosebleeds.

Blood in urine and stool and bleeding from the rectum.

Headaches.

Easy bruising and hemoptysis.

Fatigue.

Dark urine.

Confusion.

Nausea.

Vomiting.

Proteinuria.

Paleness.

Resting tachycardia.

Edema.

Decline in mental status and neurologic symptoms.

Anemia.

Uremic platelet dysfunction.

Microhematuria.

CNS symptoms like weakness and transient focal deficits and confusion and headache and paresis and aphasia and encephalopathy and seizures and altered consciousness and coma.

Cardiac symptoms like hypertension.

Gastrointestinal symptoms like severe abdominal pain and diarrhea.

Transplant is a last resort because it is truly horrific.

They need more research so it does not have to come to this.

She had wanted to post about his improvements.

She had wanted to tell everyone his beautiful brain was healing.

From three a.m. it all unraveled.

He became confused and agitated and sweaty and hypothermic and hypertensive.

He grew irritable and itchy.

He picked sores.

He pulled off dressings and tugged out tubes.

They layered mittens on mittens to keep him safe.

It was exhausting to spot him through the storm.

For three weeks he had neurological manifestations and altered mental status and hallucinations and paresthesia like bugs under the skin.

It terrified her because they did not yet know why.

They did not yet know how to fix it.

Cancer is the cruelest.

She whispered apologies into the space between his breaths.

After Monday’s neuro-episode, the neurologist prescribed IVIg.

Intravenous immunoglobulin is prepared from many thousands of plasma donors.

To her surprise it worked quickly.

Yesterday he was calm.

Sometimes in pain.

Often fatigued.

But he was himself.

Please donate blood and platelets and plasma, she asked the world.

Harvey’s neurological improvement held.

When he was not sore and tired, he was determined.

Sometimes he shook.

Often he tried anyway.

He had been mostly nonverbal for three weeks.

One of the last conversations they had was about Auslan.

He wished they were both more fluent because it would help right now.

He signed water and drink and yes and no with patient hands.

Little glimmers kept returning.

She saw her cheeky boy peek through the clouds.

She thanked God for bringing him back to her.

They were out of ICU and back on the oncology ward.

Then another trip back to ICU.

Another EEG.

She did not expect answers because he had been stable for eleven hours by the time the test happened.

He could not be tested while in the worst state anyway.

This episode was less intense.

He settled without extra ICU sedation.

It resolved after twelve hours and a heavy weave of clonidine and promethazine.

It helped that agitation began at two p.m. so the neuro team could see the state with their own eyes.

In agitation he ripped his catheter and caused bleeding.

ICU scanned his bladder.

They found clots.

They tried to flush them so the catheter would work.

They waited for urology and a pelvic scan to ensure the catheter was okay and to decide if he needed a new one.

Tomorrow marks sixty consecutive days in hospital.

She cannot wait for him to feel sunshine again.

This week his kidneys fell from five times normal to three times.

Still concerning.

Still a victory.

He worked with physio and OT twice a day.

He tried even though it hurt and he was shaky and unsteady and scared.

He kept going.

She was proud of every inch of effort.

He bravely had his NG tube replaced after losing it during a neuro episode.

Nurses and mother were amazed.

Thank you for being so brave, she told him.

Glimmers of him kept arriving.

He used the word “depicted” in a sentence and her heart melted.

There was her clever boy coming back.

Where there is a will there is a way, she wrote with a weary smile.

For those new here, Archie is her baby.

She has not seen him or her daughter for two long months because Harvey has been in protective isolation after transplant.

A little backstory held its own ache.

Archie was born deaf and received cochlear implants at six months.

They are learning Auslan and hope others will learn their local signed language.

Fast forward to now.

Archie did a triple hospital jump in less than twenty-four hours with suspected mastoiditis.

He saw ENT and had emergency surgery.

He is on IV antibiotics.

The night was hard with cannulas and medicines and restless little limbs.

As much as she hated the reason he came, seeing him refilled her empty cup.

He cried when he saw her at the theatre doors.

She cried too.

They had the best snuggles and played cars before he went in.

She watches him sleep now and hopes he wakes easier.

Questions are welcome, she says softly, but answers may have to wait.

For now she asks the world for patience and for prayer.

For now she asks for blood and platelets and plasma.

For now she asks for the courage to keep telling the truth.

Because stories like these are heavy.

Because stories like these are real.

Because stories like these can move the stone that sits on the chest of childhood cancer.

Share, she asks.

Listen, she pleads.

Do not look away, she begs.

She will update when she can.

And in the spaces between updates she will hold her son’s hand and keep breathing.

One breath.

One hour.

One day closer to sunshine.