Two is Too Young Not to Run

In November 2016, my wife Kate and I were busy with our three beautiful sons, Charlie (then aged 6), Alfie (age 4) and Harvey (age 2).

Our family was happy and carefree. We had lots of outings together, weekends away to the snow and Inverloch (our family’s ‘happy place’), football matches and Auskick games.

That month, Harvey’s health deteriorated drastically over a period of just a few weeks. He became pale, bruised easily, cried from what we now understand was bone pain and had lots of infections.

On the 22nd of November, Harvey was having difficulty breathing, which was probably as a result of the ‘thunderstorm asthma’ that struck Melbourne that night, but he also had excruciating pain in his legs. We decided to forgo another trip to the doctor and took him straight to the Emergency Department.

Within an hour of a blood test the doctor told me, with a tear in his eye, that we needed to go to Monash Children’s Hospital. We didn’t have a diagnosis, but in that moment, all our fears were realised. When I called Kate to ask her to join me at the hospital, I couldn’t speak. I had to compose myself and call her again, while Harvey slept on my lap.

That night we never could have expected that it would be the last time Harvey would walk for months or that a hospital would become our second home.  

Harvey was diagnosed with Acute Lymphoblastic Leukaemia. He was just 2 years old.

I still vividly remember wheeling Harvey in his hospital bed to his room in the Children’s Cancer Centre, passing pale bald kids hooked up to IV lines, and thinking what the hell just happened. Kate couldn’t talk for a week.

Within just 7 days, Harvey had a dozen blood tests, a port installed to his heart because the chemotherapy being administered was so caustic it would collapse his veins, a bone marrow aspiration, lumbar puncture, three general anaesthetics and two blood transfusions.

As hard as it was to watch our baby boy being forcibly held down to receive blood or medicine in those first few months, I find it harder now watching him hold out his arm without complaint.

No child should get used to that.

The Beaded Journey, a program funded by the Children’s Cancer Foundation, is one part of Harvey’s treatment that he doesn’t mind. For every procedure that Harvey has, he places a bead on a string. In 2017, Harvey’s Beaded Journey grew to two metres, as he had about 150 blood tests, four bone marrow aspirations, 12 transfusions, 13 lumbar punctures, 16 injections and daily chemotherapy doses administered over 24 hours each time.

For 3 months, Harvey lost the ability to walk, crawl or even sit up independently.

Some days aren’t so bad.

Our saviour has been music. Harvey loves Music Therapy, another wonderful service funded by the Foundation, and it always brings a smile to his face when he can dance around or tap out a beat. 

But I won’t lie; some days are just horrendous.

The side effects of the drugs are extreme: vomiting, constipation, ulcers, bleeding and bruising, as well as the endless prodding and poking.

Being an inquisitive person, I wanted to understand exactly what the drugs were doing to Harvey. The doctor explained that his high dose chemo, administered over 24 hours, would kill the cancer in his bloodstream, but if administered for a period longer than 24-hours, it would kill him too.

That same day I watched an 18-month-old boy on a similar treatment go into cardiac arrest, as his dad looked on helplessly while he was resuscitated. I found it very difficult to go back to work the next day. There are far more important things in life than arguing with a client over $1,000 on a $100,000 invoice. My perspective has certainly changed.

We are half way into Harvey’s three-and-a-half year treatment and Kate and I are only just starting to feel like we can see through the thick fog that has engulfed our family.

Harvey is in remission and he’s doing well. Our hopes are high that he will stay that way.

But it’s hard to look too far forward, because there would be just too many questions.

What are these treatments doing to his long-term health?

Will he ever run properly again?

What are the chances of relapse?

I don’t think there will ever be a point when we will not worry about Harvey. A fever, sore leg, cough…these things will always spark the fear of a relapse for us.

But one positive from all of this is that Kate and I have learnt how valuable family time is and to make the most of it whenever we have the chance.

It’s thanks to the support of the Children’s Cancer Foundation that our unforgettable journey (for all the wrong reasons) has been made a little bit more bearable.

Thank you to Joel Gniel, father of Harvey, for sharing his family's story.