On 20th October 2008 after several false alarms and then 36 hours of labour, Sebastian was finally born via emergency C section to a very exhausted but incredibly happy Mum and Dad. Such was the length of time of labour that his 2nd favourite Teddy (imaginatively named Teddy) is a whole day older than him! His favourite Teddy, who travels everywhere with him no matter what, is a hand puppet cat called Cat. Cat arrived a little later from Ikea of all places but the pair of them are now inseparable.
Sebastian was a very easy going baby who just seemed to grow up too quickly. Most things from teething to talking just happened so fast. He even enjoyed using the potty at home from around 10 months old. However we were spared early crawling or walking, thankfully. His first words ranged from “bye bye” at 6 months old to “daisy” and his absolute most used word, “this” while pointing to what he wanted. Although he could say 'Dadda', 'Mamma' took some time to say! One of our favourite early videos of Sebastian is one where he is singing the ABC song while sitting on the potty having a poo! Sebastian's favourite toy was his Thomas track and trains which he still plays with when I take it out for his little brother.
Sebastian always wanted more brothers and sisters, especially a little sister - who he still asks us for! Instead he had to be content with a little brother, Lucas. Lucas was born when Sebastian was 3 and has made his big brother even happier. They both play so well together and tell us they are best friends. But as typical brothers they have their moments. Sebastian loves to make his brother laugh and tries to teach him many things, albeit not necessarily the things we’d like!!
When Lucas was born we moved from our first home as a family in Langley, to Milton Keynes. This was hard for Sebastian especially as we had to live with Mum’s parents in Greece for three months without Dad while our new home was being worked on. Sebastian loved being in Greece but really missed his Dad. But just in time for Lucas’ first birthday, the Day family were all in their new home. We all soon found out what a wonderful, welcoming community we had the fortune to become a part of. Sebastian attended Asquith Day Centre for what remained of his pre-school year and made a wonderful friend, Finley, who is still his very close friend today. They both then moved on to Heelands Primary School which Sebastian says is the best school in the world: we wholeheartedly agree!
Sebastian has sailed through Heelands foundation and year one, quickly living up to his early academic promise becoming a free reader and enjoying all his lessons equally and by all accounts helping many others along the way. New students would be “taken under his wing” and anyone and everyone seemed to be friends with Sebastian. He knows every one of the students in Heelands and the teachers too. There was no sign of any issue as we approached half term in Year 2 and Sebastian’s 7th birthday. He had a wonderful birthday party (a spy mission with a whole bunch of his friends) but the day after we noticed he had a sty growing over his right eye. We thought nothing of this, though we mentioned it to the pharmacist who said “it looks like he bumped himself” and told us to take him to the doctors if it is not gone or better in a week. Unfortunately, at the same time, Sebastian seemed to pick up a bug (vomiting and fever) which then kept him from school. We were rightly asked not to come to the surgery as we might infect many other people with his bug but we were told to come in later in the week if it did not settle. The bug got worse and the ”sty” got bigger. We finally saw the Doctor (GP) and she took one look at the “sty” and said something like “that’s no sty” and referred us straight to the paediatric ward at Milton Keynes hospital. Sadly we cannot recall the name of the doctor who did this, as she was an on-call locum but ultimately the timely call she made that day may have served to saved Sebastian in the long run and started the whole rollercoaster we find ourselves now on.
At Milton Keynes Hospital Ward 4 we spent three very long and stressful days. From the moment we arrived at the hospital, Sebastian was seen by several doctors and consultants. We waited for another referral to see an ophthalmologist but this finally happened the following day. Sebastian had several blood tests, eye examinations and two MRI scans all within those next two days. His MRI scan was then sent off to specialist hospitals around the world, including the John Radcliffe in Oxford and the Great Ormond Street in London. Finally at 6pm on Friday evening Dr. Aye, a wonderful paediatrician from Milton Keynes hospital took us to one side and explained a few things. Sebastian has a mass above and to the side of his right eye… not sure what it is yet… mass… cancer… results sent… Oxford want you… mass… cancer… Monday… mass… cancer… blah blah… Sebastian very poorly… mass brain cancer… biopsy…
…it seems surreal now looking back writing this that we managed to take much in. The last thing any parent wants to hear is that their child is sick let alone has a mass around the eye that could be cancerous. We were shown pictures of the MRI… there it was literally staring back at us… taunting us, haunting us, a true nightmare.
By Monday we were in Oxford John Radcliff hospital, Kamran’s ward… an oncology ward full of children from teenagers to babies… all with cancer in various stages of diagnosis, prognosis, treatment, recovery… yet there was something else, a powerful feeling of hope, of joy, of healing, emanating from the nurses, doctors and carers. Late in the day following repeated test we had a meeting with one of the eye specialists, Mr Hilderbrand who was the first to explain our best case scenario and worst case scenario… Best case being a benign cyst, worst case Rhabdomyosarcoma or similar. A biopsy would be needed to determine which it was although all the indicators were pointing us towards the latter. Further test and scans over his whole body confirmed our worst fears that Sebastian has Cancer!! It’s a rare form of cancer known as Embryonic Rhabdomyosarcoma. It forms when a cell that was destined to be a muscle cell suddenly decides that it's going to become a cancer cell instead… this is 1 in 60 million chance… we’re more likely to win the lottery!! Whilst having the biopsy, the surgeon (Mr Hilderbrand) was exceptional and managed to remove nearly 90% of the tumour but he was unable to touch the remaining parts as they were too close the optic nerve and a multitude of blood vessels further around behind the eye itself.
All the other tests fortunately showed that the cancer was indeed localised to the orbit of his right eye and the decision was taken to commence chemotherapy as soon as possible so that the tumour will not grow further back towards the optic nerve and scarily further into the brain itself. Sebastian is to undergo 27 weeks of chemotherapy split into 9, 3 week sessions. At the end of the first 9 weeks he will have a scan to see the effectiveness of the treatment on his cancer, after which treatment could be continued or reviewed. After 13 weeks of chemotherapy, his radiotherapy should begin (as long as key treatment milestones have been reached)… and it is THIS part of his treatment that we will need help for.
Because of the location of his tumour being so near the optic nerve and the brain itself normal conventional x ray or radiotherapy is not recommended. For comparisons sake it would be like using a sledge hammer to extract a peanut, rather messy and not much left of the peanut, where as the proton beam therapy would be able to target the shell and the peanut would be left relatively unscathed. See pictures.
As can be seen in the pictures, the proton beams stop at the precise point as directed rather than continuing through healthy tissues. This is particularly important and vital when considering tumours that are in or around the brain such as Sebastian’s. Using proton beam therapy means that higher doses can be targeted directly at the area of the tumour itself and not beyond which will significantly reduce the chances of developing secondary cancers.
As yet Proton Beam Therapy is not available in the UK because there are no facilities. That being said, there are a number that are being built in the UK for both private and NHS patients but neither will be available for a number of years - too late for Sebastian. As a result of the lack of facilities in the UK, the NHS has no option but to send patients abroad to continue their treatment. As it happens there are very few NHS hospitals can actually arrange Proton Beam Therapy as a course of treatment, but we are very fortunate the John Radcliffe Hospital and the Churchill Hospital where we were also referred in Oxford do offer this AND it is also funded by the NHS.
In our case Sebastian will be sent to Oklahoma in the US, where they have specialist Proton Beam facilities especially for children and for those with cancers in or around the eyes and brain. The treatment abroad will be for between 9 and 12 weeks (we’ve been told and read testimonies that this is nearer to 12 than 9) meaning we’ll be abroad for about 3 months. This will be at the end of February.
Sebastian is being sent to Oklahoma in the US, where they have specialist Proton Beam facilities especially for children and for those with cancers in or around the eyes and brain. The treatment abroad will be for between 9 and 12 weeks (we’ve been told and read testimonies that this is nearer to 12 than 9) meaning we’ll be abroad for about 3 months. This will all begin at the end of February!
The NHS will fund the Proton Beam Therapy, continued Chemo therapy and flights and accommodation for Sebastian and two carers (Mum and Dad) but it does not cover living expenses such as food and travel abroad nor does it cover the cost of taking Lucas (Sebastian’s younger brother) whom we can’t leave behind!! It also does not cover any costs we might still incur at home such as our mortgage, bills, council tax etc. To make matters worse both Allegra and I will have to take unpaid sabbaticals from work. Allegra has already had to put her child-minding business on hold since finding out about Sebastian. I (Martin) will need to take 3 months unpaid leave to cover the time Sebastian is being treated in America. This is primarily why we have set up this site: to be able to fund the time that we are abroad with Sebastian whilst he is having his treatment as we will have no income. There may yet be costs that we are not aware of related to his treatment and any monies raised will be going towards this as well.
We have set a target of £10,000 which is a figure that we have calculated will cover costs and bills as stated above but should we be fortunate enough to raise anymore than we require, then all the remaining donations will be sent to CLIC Sargent who are an amazing charity that deal with Cancer in Children. CLIC Sargent have already been of huge assistance to us from the moment that Sebastian was diagnosed… physically, mentally, financially… they are the safety net that stopped us from falling off the face of the earth after finding out about Sebastian’s cancer.
CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. They provide clinical, practical, financial and emotional support to help them cope with cancer and get the most out of life. They are there from diagnosis onwards and aim to help the whole family deal with the impact of cancer and its treatment, life after treatment and, in some cases, bereavement. Please log onto their website for more information about them and everything they do. You can read more about them at www.clicsargent.org.uk