Proton Planning Update

We arrived in Manchester yesterday and are really grateful to be staying in a lovely city centre aparthotel (StayCity) that is provided for families of children receiving proton beam therapy treatment.  It feels a big upgrade to a hospital pull out bed.  There is a shuttle bus that takes us from the Aparthotel to the Proton Beam Therapy Centre at the Manchester Christie hospital, which we took this morning (leaving at 7.15). 

Anna has stayed back in Guildford so she can continue going to school this week, and as much of this week will be appointments for us in Manchester.  We hope to bring her up for some of the time, when we come ‘properly’ for Eloise’s 6 weeks of treatment.

We had a few initial appointments and consultations this morning, including with the lead oncologist who is taking forward Eloise’s treatment whilst she is here at the Christie centre.  Unfortunately it was another case of us having to consent to things we wish we would never have to agree to, but we are unbelievably grateful that Eloise is being given this treatment.

Tomorrow Eloise will have blood tests, an MRI and CT scan for proton planning (under General Anaesthetic), and a face mask will be moulded around her face to be used in the therapy.  Unfortunately the MRI isn’t until noon, so she will be nil-by-mouth from 6am… it might make for a long day!  Eloise will then travel from the Christie Centre, to Manchester Children’s Hospital for a neurosurgeon to check her shunt following the MRI in the late afternoon.  We are continuing to ‘collect hospitals’!

Proton beam therapy

Proton Beam Therapy (PBT) is a relatively new treatment.  The Proton Beam Therapy Centre here in Manchester is the first Proton centre on the NHS in the UK – and the only centre in the UK which can cater for children (private or NHS).  PBT is a form of targeted radiotherapy which limits the dosage of proton beams to the non-targeted area (see video here for more information).[1]  This type of treatment is even more essential when treating highly sensitive areas, such as the brain.  Normally, radiotherapy is not given to children under-3 because of the negative side effects, but PBT lowers some of the risks of radiotherapy as it limits the radiation dosage to the surrounding areas, and is therefore an option for Eloise.

For Eloise, with a highly aggressive ETMR brain tumour, this treatment is essential to giving her a chance of cure/survival.  It doesn’t mean it will be curative, but it gives her a chance….and for that we are unbelievably thankful. 

That said, there are unfortunately still some long-term risks from PBT on the brain – particularly for very young children whose brains are rapidly developing.  These include risks to sight, hormones, hearing and Eloise’s short-term memory function. Many of these risks we won’t know about for many years (5-10 years), and some of these risks even with PBT are still quite high.  It’s hard to be making these decisions on behalf of Eloise, but we do so with our eyes wide open and in the hope that the treatment will help cure and obliterate the cancer.

How do we feel?

• Relieved and grateful.  We have known for some time that Eloise would need Proton Beam Therapy if she is to have a chance of survival (and have a quality of life).  The facility here in Manchester is outstanding. With Covid, Eloise’s health and the inability to fly overseas – we feel very fortunate to have got Eloise here to the one centre that could treat her.  We also feel very blessed by the timing of PBT coming to the UK (especially in light of Covid) – the centre was only opened in December 2018, so if we had been in a similar situation with our elder daughter Anna, Proton Beam Therapy in the UK would not have been an option.  We are also grateful, as we understand that Eloise was the first ETMR patient to have been accepted for this treatment on the NHS – but know that others have since been accepted too! Yes!  We are so blessed.
• We.feel.weary.  We are still feeling quite tired from the lack of sleep due to having to monitor and turn off Eloise’s NG feeds over night and the constant emotional rollercoaster of a journey.  Eloise was very unimpressed to leave Anna yesterday having had a great week at home, and even more unimpressed to walk into a hospital today – and she now has more energy to make this known.
• Enjoying staying in a flat all together.  In a weird turn of events, Eloise has never stayed in a hotel before (she was only 7 months when Covid arrived and before that we’d only stayed in Airbnb’s for our holiday in South Africa etc) – so this aparthotel is the closest she’s had to a hotel.  Not quite how we’d envisioned her first 2 years of life, but we are hoping that there will be years ahead for us to make it up to her (and Anna)!

For those that pray

• For the MRI tomorrow.  Please pray that it shows no growth and no surprises!  We won’t actually receive the full scan, but apparently we will be informed if there is anything ‘surprising’.  Please pray there isn’t!
• For Anna to be ok without us this week.  For her to have fun with her Nanna’s and enjoy seeing some friends now that Covid restrictions are easing.
• For Eloise to cope being nil-by-mouth until she comes round mid-afternoon tomorrow.  It’s a small prayer, but makes quite a difference to our day.  Only one of us is able to go with her, and ‘hangry’ toddlers that have to do lots of tests/procedures aren’t particularly easy…Poor girly.
• For Eloise to be able to start proton treatment as quickly as possible.  We really need this to be quick, so please pray for everything to go smoothly, and for there to be no unforeseen -hickups.

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[1] The centre in London is due to be opened later this year (it has been delayed due to Covid).