We are forever indebted to the NHS and wonderful staff at The Proton Beam Therapy Centre at The Christie Centre in Manchester. Here are some pictures and video of Eloise’s final day of Proton Therapy and her ringing the bell to mark the end of treatment.
Coming down the stairs with Proton staff in tow, hugging Anna and ringing the bell!
How do we feel:
From the start of the journey, when we discovered Eloise had a brain tumour and cancer, we have both often cried when we have heard someone ring the bell (to note the end of treatment or when somone is NED/complete remission). Yesterday was the first time Eloise has rung the bell to mark the end of a treatment – its not the end of her treatment, but the end of proton beam therapy was a big marker. It was an emotional day on many fronts. It was also an unsettlingly sad day knowing the journey is far from over. Here are a snapshot of some of the emotions we felt:
- Proud: We are so unbelievably proud of Eloise. The way she has taken the treatment in her stride. 30 days of no breakfast, 30 days of general anaethestics. 30 days of waking up to a (generally) different nurse. Eloise travelled up to Manchester whilst still recovering from high dose chemotherapy with stem cell transplant, and was still very weak. She has progressively got stonger, less nauseous and more smiley. She made friends in the playroom and with the medical staff and visibly got stronger each time Anna came to visit. She is truly remarkable and truly a fighter. Her love of music and dancing is returning and its as if she knows she is starting to get better.
- Grateful: We are exceptionally thankful for this life saving treatment and the fact that Eloise had access to it and was approved for treatment. A few years ago, this would not have been an option – and we know for billions in the world, this isn’t an option. We are grateful and humbled we have got this far – for the support that has carried us here and for all those that have prayed. We are so, so grateful.
- Nervous: We don’t know if the treatment has “worked”. Eloise will need to wait for the swelling in her brain to settle before she has another MRI. Only a small number of ETMR patients make it this far and some of them relapse during Proton treatment. We feel Eloise has had the best treatment but very sadly that isn’t always enough. We hold on in hope that Eloise is in complete remission and for the cancer to never return.
- Restless: We know this is not the end. Not only will Eloise have further treatment and lots of tests to monitor the side effects of the treatments but we also know that statistically she has to remain cancer free for 2 years for her long term odds of survival to start to turn in her favour.
Eloise will continue to have lots and lots of appointments with different speciailists – we’ve totalled at least 12 specialists she is under – from audilogists, to ophthalmologist, to physiotherapists, to speech and language therapists, dieticians, occcupational therapists, endocrinologist, oncologists, neurosurgeons to check her shunt and recovery, tests to check kidney function, psychologists, epilepsy consultants etc etc ! The brain (or sometimes her treatment) affects her whole body…. but the NHS is marvellous, and so far Eloise is doing superbly…