It has begun, this thing that we came to America for; Proton beam radiotherapy treatment. It’s been the toughest few days since those first weeks of Caroline’s rhabdomyosarcoma cancer diagnosis.
Day 1 – Feeling The Fear
(Don’t worry, there won’t be a record of all 30 days). On Monday 5th June Caroline attended a ‘dry run’ at the ProCure Clinic, wearing the head mask, for X-rays only. It was an unwelcome dose of back-to-reality after a couple of ‘fun’ weeks while we’d waited for the mask to be made, that suddenly felt out of time.
Caroline was subdued and pensive all day. It was definitely on her mind though she didn’t say so. She was only two days out of chemo, still nauseous and not up to speed with food and drink.
ProCure Clinic, Oklahoma City
On arrival at the clinic, more like an office than a hospital, Caroline received an ID badge to scan in, alerting staff that she’s arrived each day. Otto got one too but even that didn’t cheer her up.
A brave smile but the eyes say it all..
We waited quietly until a nurse came for us.
Caroline leaped into my arms and hid her head, every sinew of body language begging not to be let go of. But no tears.
She was clearly scared and tense in the actual radiotherapy room which is huge, very Sci-Fi and completely overwhelming.
If I have ever wanted to run away and hide my child it was this day.
Caroline climbed onto the massive radiotherapy table and lay motionless while they fitted on that mask and strapped her head immoveably in place, with the giant snout looking ready to shoot at any time. Then we were asked to leave her alone in the room while they took the test X-rays.
Leaving her tiny fragile body alone in that massive sterile chamber was hell. She was INCREDIBLY brave, as usual.
Scared but Stoic
I cried while we waited – utterly sick to my soul that she has to be brave. She shouldn’t have to go through any of this. But she did, it was quick and they returned her to us emotionally drained but relieved. Being stoic takes so much out of her. She doesn’t know what stoic is but my goodness she is it! She was almost certainly in a mild state of shock for a couple of hours after the experience.
Tears on the Table
At bedtime that night, in darkness, she confided that she’d cried the whole time she was on that table, sometimes just tears, sometimes proper crying. Heart breaking sorrow for any Wild Mummy to bear.
Day 2 – On Her Own
This was radiotherapy proper and the first of all Caroline’s procedures and scans going right back to diagnosis that we couldn’t be present at. Until now we’ve been at her side for every single thing; MRI, bone scans, heart scans, chemo, everything.
Letting go of that brave little hand and watching her walk away to have radiation fired into her head from two angles is every bit as testing as allowing the poison to be pumped into her every 21 days. It felt like a betrayal of her trust.
The face mask is necessarily tight so Caroline comes back to us each day with a patterned scalp, lovingly termed ‘waffle head’ by the staff!
She also gets a glow-in-the-dark courage bead for each dose of radiotherapy – it will be 32 in total..see Beautiful Beads for Courageous Cancer Kids to learn more.
The Fabulous Fullbrooks
We are fortunate to have met other families out here with children undergoing Proton beam radiotherapy and one particular British family have been a huge support. Their 5 year old daughter, Esmee also has a embryonal Rhabdomyosarcoma, in her right eye, and the pair are cheeky partners in crime now they’ve got to know each other.
Unbeknownst to us, Esmee had ‘arranged’ with her parents to be at the clinic for Caroline, to support her before her very first radiotherapy treatment! Staff allowed Esmee to accompany Caroline to the treatment room and even to help her onto the table. It was a huge help for Caroline and huge support for us having another couple to discuss our fears with.
Thank you the Fullbrooks, you were lifesavers!
Caroline and Esmee with cowboy hats bought for them by a fellow patient
Caroline became used to being without us surprisingly quickly, returning after the third treatment almost euphoric that she’d felt so much less afraid that day. By day 8 she admitted she almost dozed off on the table! The human spirit can get used to anything.
Day 8 – Mucositis
It turns out the dozing wasn’t quite due to relaxation. We missed radiotherapy day 9 due to an unexpected hospital admission with febrile neutropenia (neutropenic fever) caused by mucositis, which in Caroline’s case is severe mouth ulcers but can affect any part of the digestive tract as both chemo and radiotherapy kill off the fast growing cells in the body, including those in mucous membranes lining the digestive system.
Pain, Pain and more Pain
She was FOUL, my beautiful angel! Angry and cross. Completely done with hospitals, cross at postponing our planned mountain adventure (with Aunty Joey who came out for a fortnight’s support), unable to properly eat, drink or speak and in deep underlying pain which produced the grumpiest mard I’ve witnessed in a long time. It also produced the biggest depression of her treatment so far, with almost an hour of crying for home, family, friends, Fidgie. “I want to go home and never have to go through this again.” Poor little lady. What the world wouldn’t give to eradicate cancer now.
It didn’t help that she’d enjoyed such a great few days beforehand so being in pain and stuck in hospital was doubly frustrating.
With careful hygiene during the low immunity times plus close monitoring of energy levels Caroline has achieved a huge amount of fun and, as I put on Facebook recently, dare I say holiday time.
Here are a few photos of our recent escapades including a rodeo, being an ambassador of honour (with Esmee) at a charity ball raising money for a teenage room at the Procure clinic, attending a Native American festival, walking trails at a stunning canyon and lighting luminarias at a cancer charity Relay for Life. (Look out for my forthcoming post on Things To Do In Oklahoma as there’s a surprisingly large amount!)
The cancer rollercoaster is as up and down as ever.
Day 18 – Oral Thrush
Caroline is now used to having her daily treatment but the radiation is taking its toll. The area of her head being targeted is now red raw, ‘sunburnt’, peeling and sore despite a special moisturizer used 4 times a day. The inside of her mouth is also agony. She barely speaks and struggles to eat now and is on a mostly liquid diet of nutritional smoothies, yogurt and ice cream.
Mucositis improves as immunity returns when neutrophils recover. However, in Caroline’s case it was followed by oral thrush. Another week of pain and another unexpected hospital admittance. She received two special courage beads for attending radiotherapy that week with a sore mouth and a sick bag after chemo. She also had the chance to repay Esmee’s favour by helping a new little girl who was afraid of having her mask fitted.
So What IS Proton Beam Radiotherapy?
Apart from blooming scary for everyone concerned?! Well, supposedly millimetre-precise, painless, deadly to cancer cells and considerably less destructive to the human body than standard radiotherapy. I won’t go into the exact science since I don’t understand it myself.
How Does Radiotherapy Work?
Human cells naturally grow and divide forming new cells. With cancer, the cells grow and divide faster than normal.
Radiation works by creating small breaks in the DNA of cells to stop them growing and dividing, causing cell death. The body then ‘mops up’ and eliminates the dead cells.
Normal radiotherapy uses X-ray PHoton beams which deliver the radiation dose at the surface of the skin. These Photon beams pass through the body causing cell damage from entry to exit.
How Does Proton Beam Radiotherapy Work?
PRoton beam radiotherapy is no different to normal radiotherapy in the way it kill cells but due to a quirk of science known as the Bragg peak, Proton beams are targeted to release their destructive energy directly at the tumour site but then travelling NO FURTHER INTO THE BODY. They also release less energy on entry, meaning less damage on entry, and no damage beyond the tumour.
Differing treatment rooms for different beam heads, CCTV of Caroline on the bed viewed from the control room
So they do the same job but Proton therapy involves less collateral damage, imperative for tumours close to other organs and the brain and especially good for children whose growing bodies are more susceptible to short and long-term radiation damage.
Radiotherapy Side Effects
This is the worst bit. As with chemotherapy, not only are we allowing Caroline to have a therapy that causes deep discomfort at the time, there are also ongoing side effects, some of which are heartbreaking to contemplate.
All radiotherapy has short and long-term side effects, some immediate and temporary, some permanent, manifesting over many years. Side effects differ depending on the tumour location but all radiotherapy has a cummulative build-up causing extreme tiredness and skin reaction – the ‘sunburn’ – both of which worsen as treatment progresses but reduce a few weeks after end of treatment. Radiotherapy itself creates an increased risk of developing cancer again later in life.
These are the moulds which attach to the end of the ‘snout’ in the treatment room. The brass one determining the shape that the proton beam targets and the blue determining the depth. We are able to keep the blue one following end of treatment.
Caroline’s tumour location produces the following side effects: –
During treatment – usually temporary
- Skin reaction
- Salivary gland changes – saliva dries or thickens (the latter for Caroline)
- Sore mouth/Mucositis
- Possible nose bleeds – none as yet
- Possible throat irritation and reflux – none as yet
- Possible temporary hearing loss due to inner ear fluid changes – none as yet
- Dry, sore or runny eyes – none as yet
The burn extends to the top of Caroline’s ear, her cheek, back of the ear and head, along her jaw and down her neck. The tumour did not extend to her neck but the burns are the entry locations for the beam
After treatment – permanent
Although Caroline’s tumour is not in the brain, it is very close. Radiotherapy targets the area of the original tumour (even if chemotherapy reduced it) and an additional area surrounding the tumour to kill any ‘seed’ cells there might be. This means a small area of Caroline’s brain, including the top of the brain stem, is being irradiated.
- Short term memory changes (unlikely to be significant with Caroline’s radiation dose) and changes to brain processing speed – mild but not zero in Caroline
- Hormonal changes and possible infertility as the pituitary gland is receiving a small dose of radiation. This will start within a year or so of treatment and will be monitored throught Caroline’s life and corrected with endochrinology (hormone therapy) especially around puberty
- Salivary gland changes. The other side will compensate but Caroline will be at a higher risk of dental caries
- Jaw movement changes, particularly the upper jaw. The joint may stiffen over time and need regular exercises to maintain movement. Years down the line the blood supply to the jaw may be reduced posing a risk of osteo necrosis so Caroline will see a hospital maxillofacial dentist every 6 months for the rest of her life
- Facial assymetry. Radiotherapy stops bone growth and affects soft tissue in the target area for the duration of treatment. Over the years this can cause assymetry as the face grows, requiring potential corrective surgery during teenage
- Sight changes. There is a very slight risk of nerve damage to the left eye which could cause retinopathy and cataracts but the risk is incredibly small for Caroline
- Hearing loss is possible over time
Facts about Proton Therapy
The technology is ludicrous. Thanks to ProCure, our proton beam clinic here in Oklahoma, for the following facts: –
- Proton beams are invisible, silent and painless
- The beam travels at 223 MILLION miles per hour from the Cyclotron to the snout
- The beam is accurate to cease motion within 0.2mm or a hair’s breadth
- The beam travels down a 150′ corridor before turning off into one of 4 treatment rooms
- The Cyclotron atom splitter weighs 220 tonnes, the equivalent of 110 elephants
End of Treatment Results
Today Caroline has only 10 radiotherapy treatments left and she can’t wait for it to be finished. She is homesick and sick of parents too!
We won’t get results for several weeks as the treatment causes swelling so an MRI won’t be done until the swelling has reduced.
Coming to the NHS Soon
Proton Beam Radiotherapy will be available via the NHS in the UK in the next year or so at Manchester’s Christie hospital and UCLH London. Read more here and here. A private Proton centre is also currently being built in Newport, Wales.
Follow Caroline’s cancer journey at Caroline’s Rainbow.