Proton Go!

30 general anaesthetics, 30 proton beam therapy sessions, 30 mornings of being nil by mouth, many CT scans and X-rays (starting off daily, then every few days) and 3 birthdays…it’s set to be a full 6 weeks in Manchester!

Today Eloise had her first Proton beam therapy treatment.  It marked a big day in obliterating this brain cancer. It really is a key moment.

The last few days have been full on. We enjoyed being at home for a few days all together – seeing some family and friends and feeling, for just a few days, a little more ‘normal’. Unfortunately on Monday, Anna had a mild temperature so needed to be off school until we got the negative result of a Covid test, and Eloise had her audiology appointment and various check up appointments at the Marsden.  Eloise’s hearing results are ‘inconclusive’ but nothing seems to be of concern.  As you can imagine, we still have ‘normal’ life challenges alongside the Eloise situation…

We all (including Anna) drove up from Guildford to Manchester last night after school to start Eloise’s 6 weeks of treatment.  We are staying at StayCity in the centre of Manchester, overlooking Manchester Piccadilly.  It made for a late night and we’ve all been feeling rather tired today as a result.  Eloise had to be nil by mouth from 3am, so she had her NG feed until then.  We all (including Anna) had to miss breakfast and drinks this morning, in support of Eloise – and will need to for the next few weeks (we can’t be having our morning coffees etc when Eloise is asking for breakfast!).  We are one hungry family…

But Eloise did really well.  She was certainly ‘hangry’ today – saying persistently ‘breakfast’ or ‘snack’ for several hours…often crescendo-ing to quite an unbearable level (she clearly thought I, Mel, could not hear and still doesn’t understand why I’m not hearing/understanding/giving her breakfast!).  But she successfully got through the first of her 30 GA’s and proton treatments uneventfully, and was back at the flat by 2pm.

How do we feel?

• Whacked!  Physically and emotionally we feel exhausted at different times – and it’s often surprising when it hits us.  Today was one of those days.  Exhausted from the trip up (since Eloise’s surgery she really doesn’t like anything moving such as the car or buggy, so car journeys can be challenging). Emotionally exhausted from reaching this point – knowing that WE NEED THIS TO WORK.
• Grateful for Eloise being an outpatient and us all being able to be together, but equally conscious that the next few weeks will still have its challenges.  It’s hard to know how to parent her or what to expect – and no day quite goes to plan.  Eloise does so well on most occasions but it is hard to know what to expect of her and how best to respond to her.
• Conscious that this treatment also has some short and long term negative side-effects that will need to be managed.  In the short term, the proton treatment will cause swelling in the brain (which is likely to cause headaches and possibly further seizures), sickness, redness on the scalp, and for Eloise to be very tired and sombre for several months.  As we have mentioned in previous blogs, there are also several long term possible and very likely side effects.

For those that pray:

• Give thanks that Eloise has come this far with so little side effects of her multiple surgeries and high dose chemotherapy treatment.  Give thanks that she continues to have none of her partial seizures since the surgery that removed the tumour.
• Give thanks that Eloise has been able to start Proton Beam therapy.  This is such a blessing and a big answer to prayer.
• Pray that the proton beam therapy treatment works!  We need it to kill every microscopic cancer cell!
• Please pray for limited short term and long term side effects.  Please specifically pray against any seizures (particularly generalised breakthrough seizures) as a result of proton therapy – we are conscious that Eloise has had these previously during intense treatment.  Please pray this doesn’t happen (especially as she is an outpatient).  Please also pray for long term protection for her brain – for limited effects on her short term memory function.  She’s a smart, sassy girl and we want her to have life in abundance and be everything God made her to be! 

Keep living up to your name Eloise Zoe!

Eloise enjoying some (nutritious) crisps after successfully completing her first treatment!