HomeWho Are WeOur StoriesMeet Caleb
HomeWho Are WeOur StoriesMeet Caleb

Meet Caleb

What’s it like to live with “the lump”? Hear about Caleb’s cancer journey, in his own words.

On May 11, 2024, 9-year-old Caleb Jackson took the stage at our Sparkle for Hope Gala Dinner & Ball, a dazzling annual fundraising event in Christchurch in support of Child Cancer Foundation.

With his parents Alice and Dan by his side, Caleb brought everyone in the room on a captivating journey from the time of his diagnosis to the time he made his speech – still on treatment, still living with “the lump” in his head and still full of spirit (and ready to dance the night away once dinner and formalities were done).

All you could hear in the grand room was the young man speaking. By the end of his story everyone stood. Applause rose and rippled. Each of us in attendance were moved, inspired and in awe as Caleb stood back and smiled, leaving us with a tremendous example of mustering strength and doing hard things. The applause did not stop until well after he made his way back to his table and sat down.

So here it is. Please enjoy Caleb’s story, in his own words as spoken that night!

Thank you for having me and my parents as your guests tonight.

It’s an honour and a privilege to be standing here.

What would you say if someone told you, you have an ‘Optic chiasm/hypothalamic tumour – pilocystic astrocytoma, WHO Grade 1, WITH precocious puberty, progressive reduction in left visual acuity, and gross visual field defects that affect function?’

Phew – quite a mouthful, isn’t it?

Well, that’s what the professionals say I have. But for me, I just call it “the lump in my head.”

Hi, my name is Caleb Jackson, and I am 9 years old. This is my journey with my brain tumour and how Child Cancer Foundation has supported our family over the past two years.

DIAGNOSIS – May 2022. But my symptoms started when I was 3.

An MRI found the “lump in my head”, but my body told me much sooner. My vision was getting worse and I grew 10cm in one year — I was a head taller than my friends. And I was going through puberty, though nobody knew.

Around my 7th birthday, an answer finally came.

Before I knew it, we were surrounded by doctors saying big fancy words that I did not understand.

My first night in hospital is a core memory. I’d never been in a hospital for anything serious before, and definitely not overnight!

They gave me food, I watched movies, and Mum played monopoly with me. How cool is that?!

Not very, I realised, when they sent me for a lumbar puncture, and put me to sleep. Waking up feeling confused and agitated was the worst part, it was NOT fun!

Next, I was taken to Ophthalmology to get my eyes tested, going from one room to the next.

I was not impressed!

Maybe this hospital thing was not so great after all.

The eye test showed I had low vision in my left, a little bit in the right, and no peripheral vision at all. Because my eye nerves were squished by the “lump”.

Then things moved fast. Every week I was in hospital for something different.

First, a biopsy of the “lump”.

That got me a pretty epic scar on the left side of my head.

The recovery was hard and I had to be super careful for 2 months. But I was told that it was a cool battle scar, and soon enough I was back to most of my usual activities.

Treatment to pause puberty was next.

My endocrinologist said the “lump” may be the main event, but my Precocious Puberty was important to get under control too.

She explained that my body had made all these changes because my pituitary gland was being squished by the “lump” too! And it released a lot of hormones, like the testosterone of a 15-year-old, so puberty came early.

This fast-forwarded my bone-age 3 years ahead.

Now I hear you saying, “What is a bone-age??” It’s how much your bones have fused.

Treatment was two big jabs in my legs, Arghhh!!! No thank you! It took me a lot of convincing to get these done.

TREATMENT TO SHRINK THE LUMP IN MY HEAD – Chemotherapy, low dose and often.

Biopsy results showed the “lump” was not going anywhere fast.

A solid brain tumour, in a complex location.

“Too risky to remove” they said. So slowly shrinking it would have to do.

Chemotherapy started. Every Friday. Bloods, too!

The doctor kept on top of any side effects and adjusted things when needed. All the doctors and nurses were so lovely.

One month in, Child Cancer Foundation came on the scene. I still remember meeting Gabi for the first time, she was our ‘Family Support Coordinator’.

She brought a real light and warmth into the hospital room.

Gabi brought this big bag with her, and inside was the most wonderful, soft, comfortable blanket! I remember lying in my bed all wrapped up in it. It felt like a big warm hug.

As I smiled and said thank you, Gabi smiled back saying, “only the best for our children”.

As I lay there, Gabi chatted to my Mum about who they are as an organisation and the support they provide.

She asked if we needed any help with fuel, groceries, and other basic needs.

She said they could provide a parking pass for all the hospital visits. Then Gabi handed me a string with beads for each letter of my name.

She said every child that signs up with them gets what’s called ‘Beads of Courage’. And that I would get a bead for each step of my journey, representing milestones, achievements, hard times and good, and courage throughout it all.

2 years on I have nearly 500 beads and counting!

My siblings even have their own beads, given on special occasions and when they go through hard times where they have shown courage.

This journey is not just about the child going through treatment, but the family too, and Child Cancer Foundation really get this.

The months went by so fast: Chemotherapy, MRI’s, specialist appointments and reviews.

Child Cancer Foundation, by our side every step of the way.

August 26th, 2022, and 3 months into treatment. A day I will never forget. It was a ‘Lucrin’ day. Remember the 2 big ‘jabs’ in my legs?

Mum and I both went into the hospital a bit ‘off’ that day. It had been a tough morning, and we were not in the right headspace for the day ahead. I’d just had an accident on the school playground, too. By the time I went in to get my port accessed and Lucrin done, I was not in a good place.

Every time my wrist was touched, I would flinch and feel more and more upset. I jumped off the bed and refused to keep going.

We were there the whole day and eventually I was able to calm down and get the job done.

That’s when we started saying “we can do hard things”.

When Gabi heard it, she said, “That deserves a courage bead for your bravery to get through such a hard experience”.

That support has meant so much to me, and I look at my courage LEGO bead and think of how far I have come.

A second chemotherapy when the first one didn’t work, many days off school with nausea and fatigue.

All a big reminder that “we can do hard things”.

And Child Cancer Foundation was always there to hold our hands along the way.

January 2023, 8 months into treatment, an event called the ‘Long Run’ came around. Organised and run by ‘Crusaders Rugby’. A fundraiser for Child Cancer Foundation.

I’d just changed over to my new chemo, so wasn’t very well. But I managed to go for part of the day, doing 4 laps around a 1 km course, with LOTS of rests in between.

Enter my new friend Aaron Webb.

He works for the Crusaders and organises this event each year.

Webby took me under his wing and started coming to my hospital appointments and even my MRI’s. As you can imagine, this has meant a lot to me throughout my journey.

Another 2 months passed, it was March 2023.

I am NOT doing well. I didn’t feel like eating, but we all thought it was a side effect of the chemotherapy.

Then, I stopped eating all together. NOT good!

My Mum rushed me to CHOC and they put me on IV fluids immediately. I had test after test done and eventually an MRI.

Turns out a cyst near my “lump” had grown so much it stopped the flow of spinal fluid.

I was rushed in for emergency surgery to restore the flow of fluid from the brain to the spine.

It was so successful I was one of the most awake and talkative I.C.U patients that night!

AND I was able to eat again, which felt SO good!

But it meant my treatment plan was stopped yet again.

My third and current line of treatment started: Mekinist Trametinib.

My nausea lifted, and it was quite a surprise when my hair turned from brown to blonde! I must say, I quite like it.

But it also brought infected toes and fingers, dry and painful skin, nose bleeds and a sore tummy. And in March I had Pneumonia, where I lost my voice and was quite unwell.

I needed a doctor review in CHOC, antibiotics, and lots of extended rest. I had to drop my afterschool activities and miss school sometimes.

There have been some positives though. This treatment has seen the most shrinkage so far!

The 3-month review MRI showed such great results, that they let me do reviews every 6 months instead of 3!

Also, my vision has greatly improved, and my love of reading has returned!

My bone-age is stable and some of my physical symptoms are even reversing!

All this being very positive news for my future going forward.

January 2024, over 1 ½ years into treatment, and 10 months into my current meds.

I was coping well so I decided to give the ‘Long Run’ another go.

My aim was to double the previous year’s efforts, doing 8 laps around Rugby Park.

Well, I managed to far surpass that by doing 21 laps over the course of the day!

And my Dad ran a full marathon! 42 laps!!!

Each lap raised funds for Child Cancer Foundation. It was amazing to be able to contribute as a family in such a significant way!

Events like this all help raise the funds Child Cancer Foundation needs, to continue helping families going through this hard and lengthy journey, and it is so great to be able to do our part.

Standing here today, I’m 2 years into this journey of having a brain tumour and all that this entails.

Most of the time you wouldn’t even know it’s there.

My battle scars are covered by my hair, and my infected toes covered by my shoes.

But the “lump” is still in my head, and I still get those big jabs in my legs.

I still get MRI reviews and see my specialists too. And Mekinist tablets on the daily.

And today we have Lucy visit us from Child Cancer Foundation. Our new, (not so new) ‘Family Support Coordinator’ supporting us so dearly on this journey, through having “a lump in my head”.

I would like to end by thanking you all for attending the ‘Sparkle for Hope Ball’ and doing your bit to help support families with Child Cancer Foundation.

It makes a HUGE difference and means so much! I hope you enjoy the rest of your evening.

Thank you for listening, and Goodnight.