KD old boys make little girl’s life-saving cancer treatment in US possible.

HELEN GRANGE

Then, in a blink of an eye, their lives changed irreversibly. Hannah had been complaining about “bad headaches” located behind her right eye, and then she said she felt numb on the right side of her face.

Within hours of telling her parents this, her father took her to hospital, where she underwent an MRI scan. Then came the earth-shattering diagnoses: Hannah had a life-threatening tumour near her brain – in medical terms, Group4 Stage4 embryonal parameningeal rhabdomyosarcoma.

“From symptoms to diagnosis to full-blown chemotherapy, took 11 days,” says Julian. “In that time, our lives changed completely,” he says, describing their new reality as a “parallel universe”, with all their resources focused on fighting a battle they never saw coming, but that they believe, wholeheartedly, they’ll win.

In-between her regular week-long stays in hospital receiving chemotherapy (one week out of every three), Hannah is at home in a meticulously monitored sterile environment. Hayley has given up her practice, and between her and Julian, they are on 24/7 duty, ensuring that nothing compromises Hannah’s extremely weakened immunity due to the chemo.

“Hannah can’t eat food that’s been sitting too long, for instance, because her white blood cells are very low, especially following chemo, and she’s in serious danger of picking up an infection,” says Julian.

But more than this, Julian and Hayley have become fast-tracked lay experts in Hannah’s type of cancer. It is inoperable, as the tumour is wedged underneath bone at the base of her skull, involving the right sphenoid sinus and carotid artery, and protruding into her brain cavity.

“We have learnt that this soft deadly mass, more than an inch wide, has been silently growing inside her, next to her brain, without symptom or warning,” says Julian.

Her only hope is a revolutionary intervention called Pencil Beam Proton Radiation therapy, which is only available in the US, and Julian has learnt enough about it to speak with impressive authority.

Proton radiation therapy targets the tumour very precisely, so it’s able to spare the surrounding healthy tissues and minimise the side effects. “The proton beam goes in and only blooms to full power as it reaches the tumour. The procedure has been refined by pencil beam scanning technology, which makes it even more precise,” explains Julian.

The problem is that this lifeline of hope is extremely expensive. It is estimated to cost upwards of $500 000 for approximately 33 treatments and concurrent chemotherapy with the necessary hospitalisation and imaging scans over a period of 18 months.

It was a shock to learn this, but for the Katz family, there was no question. Their battle had reached a whole new level, so their game plan was tailored to match.

“Our beautiful, innocent 11-year old has cancer. Medical science has made great progress and Hannah can benefit from these advances. So, yes, we are in the biggest battle of our lives, but our reality is simple: We are going to America, to get Hannah well again,” says Julian.

Enter the Jewish community. The first thing Julian did was reach out to a 200-strong group he was in matric with at King David, in 1976. Many of his old schoolmates are doctors, and they’re scattered all over the world. They immediately responded, forming a “committee”, and within days, had put Julian in touch with the top professors at the top hospitals worldwide.

One old friend, Connecticut-based David Greenstein, set up a GoFundMe crowdfunding campaign for Hannah, and the donations have poured in, mainly from the Jewish community. Created on August 27, it has already raised $125 880 of the $500 000 requested, and the page has been shared 1 600 times.

“In the space of 40 minutes, one friend sent me 60 abstracts by doctors I was researching. The support is just so humbling. The mothers of my daughter’s friends at King David have also pitched in, and we’ve been offered every kind of assistance thinkable once we’re in the US, from accommodation to transport to tips on how to open a bank account,” says Julian.

It’s all systems go now for the family’s indefinite relocation to America in four to six weeks, but again, it won’t be easy.

“We are taking Jonah out of school (he’s also at King David), because this is a family journey. I don’t know when we’ll be back, but the kids are young and bright enough to catch up,” says Julian, who is busy establishing which hospital Hannah will go to, and where the family will stay.

“The biggest consideration is protecting Hannah’s immunity, so our choice of accommodation is entirely determined by that. I’m now looking into the flight logistics, and whether we can get her onto a private corporate jet,” he says.

The strongest fighter in all this, however, is Hannah herself.

The chemo sessions make her nauseous and exhausted, and she has lost her hair. Yet she has an indomitable spirit and a fierce determination that saw her achieve her dream of winning SA karate colours a second year running in 2017.

A karate kid since nursery school, Hannah is a star pupil at the Mark Wainman Karate Centre in Sandringham, and in the flush of her health last year, won gold medals in the dojo competition.

She was intent on winning a second time on September 10, her cancer notwithstanding. Before the competition started, however, Hannah suffered a setback and spent five days in hospital fighting an infection, with the help of a blood transfusion and relentless nursing.

“It was touch and go. On Saturday the 9th, her blood cell count was far too low, but at 4am on Sunday, a blood test showed borderline results, so the amazing Dr Kate Bennett, our oncologist, allowed her to go.

“It was like a military operation, getting her to the centre, then back again so she could be hooked back up to the drip,” says Julian.

“Hannah has shown strength none of us knew she had. She may feel sick from the chemo, but she smiles, she laughs, she chats with her school friends on Facetime. Our only focus now, is to save our little girl.”

• Funds from the GoFundMe campaign will be paid to a professionally audited trust fund set up for Hannah to manage those expenses. Funds will be paid directly to the hospitals and treatment centres where necessary. https://www.gofundme.com/6cjg9j-help-hannah-heal.
• One of the fund-raising initiatives are selling Hannah-designed bracelets that are being sold at the Jewish schools.
• For updates, check Hannah’s Facebook page, titled ‘Hannah our hero warrior’.https://www.facebook.com/pg/Hannah-our-Hero-Warrior-1956881604594853/posts/