My name is Samantha Dray and I am the mother of Hari Effendi-Dray (my one and only child). We have just recently received a £3000 donation from your organisation which we used to purchase a second-hand wheelchair accessible car. We are so grateful and would just like to tell you a little about the positive impact it will have on our lives as they currently are.
Hari is now 18 but was only 17 when an MRI scan showed a large, cancerous medulloblastoma tumour in his cerebellum. Unfortunately, our local hospital went in and operated a bit too quickly, without following the recommended paediatric pathway, and a consequent brain haemorrhage led to brain damage in brain area around the site of the tumour. This is helpful to understand in hindsight but for four weeks, before Hari was transferred to UCLH T12 Teenage Cancer Trust ward, he was like a vegetable unable to open his eyes or move any limbs.
On T12 Hari’s tumour was treated daily over 6 weeks with radiotherapy and chemotherapy and is now on a 6-month program of maintenance chemotherapy treatment.
During his whole stay on T12 Hari was mute and unable to say one word; this lasted for five, long months. In August he was transferred to a level 1 neurological rehabilitation unit in the National Hospital of Neurology and Neurosurgery. He is still here and will be until February 2018. Hari hasn’t visited home or slept a night out of hospital since his surgery in April and his first visit back home to Romford is tentatively planned for 1st December ????????.
Hari has continued to have chemotherapy throughout his rehabilitation which can have an adverse effect, as you can imagine, but he has continued to be motivated and determined to make progress. His speech is slowly returning (as you will see in the video attached) and neuro-physiotherapy continues to aid his movements. However, it is likely that Hari will have to have consistent and high-quality therapies for another couple of years to at least give him the opportunity to recover as well as he possibly can. Nobody knows if he will ever walk or live independently ever again.
Throughout Hari’s time in hospital I have not left his side and have been his voice and his protector 24/7. Since being in the NRU and his speech became clearer, I have been given accommodation in the charity house run by Clic Sargent: Paul’s House, opposite the Macmillan Centre. It is a 12-minute walk from there to Hari’s NRU in Queens Square and has been a source of great comfort and enabled me to continue supporting my son on a daily basis as easily as possible.
Hari made it home for Christmas thanks to your support and donations.
We received this update – March 2018
Hari had his last chemotherapy treatment on 12th Jan and now all the focus and attention is on his physical rehabilitation and speech therapy. He was having chemotherapy for 8 months and I am in awe of how maturely and courageously he handled it. The remarkable team at T12 and UCLH strove to cure his cancer and ensure it doesn’t return… well, the scans are clear of tumour and I feel that the universe knows that Hari still has a massive fight on his hands regarding the brain damage and rehabilitation so I am hopeful that the cancer will not return. ????????
We did get home for Christmas and it was lovely, normal and an opportunity to appreciate the simple things in life. We had to go back to the rehabilitation unit between Christmas and New Year for his physiotherapy sessions but then had another weekend at home to spend under the same roof … luxury.
Hari’s six months in the rehabilitation unit are up in one week. He will finally be leaving hospital and a rehabilitation environment after 10 long months. The plan is for Hari to come home for about three months, to allow him time and space to get stronger, mentally and physically, and then go to another specialist rehabilitation centre for an extended period of time (maybe another four – six months). It’s hard to think about this now but it’s an option and may be the best opportunity for his recovery.
So, long story short, we are now able to drive backwards and forwards to home and hospital at our leisure (thanks to you and the Tom Bowdidge Foundation) and we are in a new stage of this journey preparing for life at home, necessary adaptations and building work on the house and interviewing carers, motivators and therapists to keep Hari’s rehabilitation going and maintain quality care and consistency.
Thanking you once again for remembering about your West Ham chat with Hari and for our super little car (aka The Jabberwocky) ????.