Coming to America – NHS Funded Proton Beam Radiotherapy in Oklahoma

Oklahoma City, 48hrs after arrival in the USA and we’re on tornado alert, eating pizza in the hotel whilst waiting for the siren to sound… If it does, we dash to a tornado-safe room! I don’t think this fact should excite me quite so much as it does but I’m loving the idea that Caroline’s cancer can’t put a stop to our Kids of the Wild mini-adventures in the midst of all this turmoil, and in this instance it’s the cancer that’s created the adventure, bringing us to America!

Tornados apart, we are deeply grateful to be here and that Caroline’s tumour treatment is fully funded by the NHS. It’s a huge positive as this treatment is generally only funded for patients with a strong prognosis. Proton therapy will be available on the NHS in the UK in the next year or so but until then eligible patients receive treatment in either Switzerland (currently under renovation) or America. To qualify for this therapy without having to pay is a real blessing.

We’re in our own tornado anyway. A turbulent few days ago, some 5000 miles away back home, I breathed in – Caroline went for yet another general anaesthetic, the day before her 4th round of chemo, for 9 milk-tooth extractions (yes 9, prophylactically, to avoid possible infection during the low-immunity times that chemo produces). I’ve only just exhaled, having felt rigid with tension ever since.

Feeling ‘Poop’

After the op Caroline said she felt “Poop.” Too right gorgeous girl, though my choice of 4-letter words might have been subtly different..!

So we find ourselves in America. We arrived safely and in style. Caroline was treated like royalty, escorted at each airport with either a wheelchair or luggage buggy (she walks fine but gets tired easily) all arranged by our excellent NHS team back home.

I underwent a full drugs search at Dallas, hardly surprising when carrying 10 weeks supply of controlled drugs, painkillers, powdered and liquid nutritional supplements! Another life experience ticked off.

Fear of Flying

Nervous about the flights for weeks (landing, take off and sharp turns mostly), the hospital psychologist back home provided Caroline with advice for coping. We informed the airline, and both British Airways and American Airlines pilots showed Caroline the cockpit (reducing me to tears on getting two whole planes to applaud her).

We were thrilled to be upgraded to business class on the transatlantic leg due to the tenacious work of my sister and a friend on our behalf. Caroline loved it and frankly, with everything she has endured and will endure she deserved to be spoilt rotten. In Dallas, AA even gave her a welcome poster, cuddly toy and cap.

Thank you BA and AA.

Awesome BA pilots Tom and Tim (or Tim and Tom?!)

Home from Home

The hotel suite is more than adequate, with a choice of three double beds in two bedrooms, a small lounge/kitchenette and two bathrooms. There’s a pool to torment Caroline (she’s not allowed to get the Hickman lines wet) though the hospital gave us some splash-proof dressing covers so she was able to go in waist deep. A real treat yesterday in the heat.

Wild Daddy gets a dip & fun with a water gun when nobody can splash you back!

Support in the Storm

People everywhere are asking about Caroline, offering prayers and meals and another cancer patient even bought her a real cowboy hat! The support of strangers adds to the overwhelming sense that we are being carried through this whirlwind by the intense love and support of people all over the world. Incredibly heart warming.

Preparation for Proton Beam Radiotherapy

After initial orientation at both ProCure radiotherapy clinic and OKC Children’s Hospital we’re in limbo. Radiotherapy starts on June 05th for 6 weeks, 5 days a week. It takes 10 days before that to make the nozzle moulds for the proton beams – one in 2D brass, shaped like the tumour from a particular angle, plus one in 3D wax(?) detailing the exact depth and volume.

Two or three of each may be produced from different angles, depending on how the tumour will be treated (attacked), merging the latest CT and MRI scans to obtain the required data. I’ll post on this later, there’s some amazing science behind it – e.g. the beams travel at 2/3 the speed of light, that’s 223 MILLION miles per hour, from the cyclotron to the tumour site!

Making the Mask

A final CT scan was taken after face mask fitting. This will hold Caroline still during radiotherapy; essentially screwed to the table by her head mask. Not pleasant and something I would experience as claustrophobic yet in true warrior style she bore it with a smile, even saying she’d been excited to get it made. That’s my girl!

The mask is made from some apparently top secret thermoplastic fibre, softened in boiling water then moulded tightly around the face and head, after slight cooling obviously! It hardens within minutes attaching underneath so that Caroline can’t move her head.

CT scan with mask on

More psychological preparation back home involved Caroline making a face mask for her bear, Otto. Exceptional care and service yet again, by the NHS.

Chemotherapy Protocol and Drugs

Chemo round five, the half-way point of Caroline’s treatment, starts on June 01st. The protocol for her type of soft tissue sarcoma is 9 rounds of chemotherapy using the drugs Ifosfamide, Vincristine and DActinomycin over 3 days in hospital every 21 days.

Actinomycin exacerbates the ‘sunburn’ side effect of radiation treatment so that will be dropped for rounds 6 and 7 of chemo. The upside to this is that Actinomycin causes the most sickness so at least Caroline will have two chemo rounds with a reduced nausea level. Back home there will be two final rounds of full chemo.

The radiotherapy moulds are currently being calculated and manufactured so we’re making the most of the spare time.

Bombers, Bears, Playparks and Nature Therapy

We’ve visited an airshow at Tinker Airbase where the highlight was seeing a B2 Stealth Bomber (being flown by an RAF pilot as well as an American).

Oklahoma Zoo was a great day out, the Grizzlies being an absolute highlight. It was inspiring to see them behaving naturally in captivity – swimming, playing, scratching and cooling off in the waterfall. (I’ll post my thoughts on zoos at some point in future as it was saddening to see the size of the cat enclosures. Most of our UK zoos seem far better at providing proper space and habitat for the animals. But I digress!)

During times of energy Caroline also enjoyed Lake Hefner, a nature reserve (where a tick befriended my sock – Deet ahoy for future visits) and playparks.

This weekend though, she is exhausted, at rock bottom neutropenia stage so we are resting and avoiding germs while her blood count rises. More on neutropenia soon.

Tornado and Tooth Fairy update

So no tornado, it just thundered all night. Very disappointing! Oh, and the tooth fairy received a letter asking if all 9 teeth could be kept and would she leave dollars instead of pounds – the obliging fairy carried $25 dollars all the way across the Atlantic!

Who’d have thought that in the turmoil of cancer treatment we could actually have fun?!

Read more about Caroline’s cancer journey at Caroline’s Rainbow. 

Reach Out for Support

If your child has been diagnosed with cancer, or anyone you know has been affected and is looking for support, help or information, PLEASE don’t hesitate to reach out and get in touch with me – you can use the contact form on the website or message me via Facebook at Kids of the Wild and I will respond personally.