Starting Proton Beam Therapy – Preparation Visit at UCLH

Today marked an important milestone in Aleks's treatment journey as we visited University College London Hospital's Proton Beam Therapy Centre for preparation ahead of starting his six-week radiotherapy treatment.

A Remarkable Facility

The Proton Beam Therapy Centre is housed in UCLH's impressive Grafton Way Building, a £350 million, 13-storey facility that opened in January 2022. What's truly extraordinary is that the proton beam therapy centre itself is located 32 metres underground, spanning six basement levels. This remarkable feat of engineering was necessary to house the incredibly sophisticated equipment required for this advanced treatment.

During our visit, Aleks spent time with one of the wonderful play specialists - Katie - who explained what proton beam therapy is and what to expect during treatment. Watching Aleks listen so attentively was both touching and reassuring – the team have an incredible way of making complex medical procedures understandable and less frightening for young patients.

Understanding Proton Beam Therapy

Proton beam therapy (PBT) is one of the most advanced forms of radiotherapy available today. Unlike conventional radiotherapy, which uses X-rays that pass through the body and can affect healthy tissue on the way in and out, proton beam therapy delivers radiation directly to the tumour with virtually no "exit dose."

This precision is possible because protons can be controlled to stop exactly at the tumour site, releasing most of their energy right where it's needed. For Aleks, this means the surrounding healthy tissue, organs, and structures will receive minimal radiation exposure.

Why This Matters for Children

The benefits of proton beam therapy are particularly significant for children like Aleks. Young bodies are still growing and developing, making them more vulnerable to the long-term effects of radiation. By dramatically reducing the radiation dose to healthy tissue, PBT helps minimise:

• The risk of developmental problems
• Damage to growing bones and organs
• Long-term complications
• The possibility of secondary cancers later in life

For Ewing Sarcoma specifically, proton beam therapy has shown excellent results. By reducing radiation exposure to nerves, muscle, and skin around the tumour site, PBT can decrease the risk of surgical complications and improve long-term functional outcomes.

Access to Cutting-Edge Treatment

We feel incredibly fortunate that Aleks will receive this treatment. UCLH is one of only two NHS proton beam therapy centres in the entire United Kingdom – the other being The Christie in Manchester. Together, these centres can treat up to 1,500 patients per year, with UCLH treating around 650 patients annually. About a third of these patients are children and teenagers with complex cancers.

The fact that the NHS invested £250 million in building these two national centres demonstrates the commitment to providing the very best cancer treatment for patients who need it most. Before these centres opened, families had to travel abroad for proton beam therapy, often at enormous personal and financial cost.

The Technology and Expertise

The level of sophistication involved in proton beam therapy is staggering. The treatment requires:

• Massive cyclotrons to accelerate protons to nearly two-thirds the speed of light
• Incredibly precise gantries that can deliver the beam from multiple angles
• Advanced imaging systems to ensure millimetre-perfect accuracy
• Specialist medical physicists, radiographers, and oncologists
• Purpose-built treatment rooms with walls several metres thick

The entire basement complex at UCLH was engineered specifically to house this equipment safely and effectively. It's truly a marvel of modern medicine and engineering working together.

Our Deep Gratitude

We cannot express enough gratitude to everyone involved in making this treatment possible for Aleks:

To the NHS: For investing in this life-saving technology and making it available to families like ours, free at the point of care. The commitment to providing world-class cancer treatment regardless of a family's ability to pay is extraordinary.

To the UCLH team: The radiographers, oncologists, medical physicists, play specialists, nurses, and countless other staff members who work tirelessly to deliver this complex treatment with such care and professionalism. The way you've explained everything to both Aleks and to us has been exceptional.

To the play specialists: For having the gift of explaining frightening medical procedures in ways that children can understand, making what could be terrifying into something manageable. Watching Aleks listen and ask questions today showed us how much difference your approach makes.

To everyone following Aleks's journey: Your support, messages, and donations continue to mean the world to our family and help fund vital cancer research and care.

Looking Ahead

Aleks will begin his six-week course of proton beam therapy soon. He'll need to visit the centre five days a week, Monday through Friday. Each treatment session is relatively short, but the preparation and positioning must be absolutely precise.

The team has prepared us well for what to expect: there may be some fatigue and possible skin irritation at the treatment site, but these side effects should be manageable and temporary. More importantly, the long-term benefits of this targeted treatment far outweigh the short-term challenges.

A New Chapter

As we embark on this next phase of treatment, we're filled with hope and gratitude. Hope because Aleks is receiving the most advanced radiotherapy available anywhere in the world. Gratitude because we live in a country where access to such extraordinary treatment doesn't depend on our ability to pay for it.

The NHS, the medical teams at The Royal Marsden, UCLH, and all the supporting hospitals have shown us what truly world-class healthcare looks like. They're not just treating Aleks's cancer – they're caring for our whole family with compassion, expertise, and dedication.

We're ready for the next six weeks, knowing that Aleks is in the best possible hands, receiving treatment that gives him the best possible chance for a healthy future.

Thank you for continuing to follow Aleks's journey and for your unwavering support. 💛