Our world as we know it ended on Monday 3rd June 2013….Christopher had fought a two year battle with Hodgkin’s Lymphoma, a battle he was convinced he was going to win…. Christopher’s life had been one big battle not always with illness but with his everyday abilities to fit into normality….This is about what Chris stood for, and why, we as a family feel that his various fights through out life shouldn’t have been in vain…..
? The Early Years…..
Tuesday the 12th of October 1993 was a sunny but crisp Autumnal day, and the day that our son was gifted to us. Christopher Scott Coutts is the youngest of three siblings, there are 18 months between him and his brother Steven, and his sister Louise is 6 years older.
We moved from Edinburgh to Dalgety Bay in Fife when Chris was just 18 months old. He was your typical happy go lucky toddler and even at that age people would comment on his smile, he could win anyone over with one of his smiles. His energy and zest for life was clearly evident even at this early age.
It was during his nursery years that staff noted Chris’s difficulties but it wasn’t until primary school that these problems where highlighted….Chris found writing difficult and copying from the board tiring, his concentration would flounder and he would become frustrated at having to ‘conform’ to his educational environment. After four years of fighting the educational red tape Chris was diagnosed with Dyslexia, ADHD, Dyspraxia, and mild Tourettes Syndrome. Unfortunately we had a fight on our hands when it came to getting additional support for him and it wasn’t until Primary 6 that Chris was sent to a speech and language unit in order to teach him strategies in coping with his difficulties. To say that Chris found primary school harrowing is an understatement! He felt continually frustrated that some staff wouldn’t acknowledge his difficulties, or take time to listen to him, and he quickly became ridiculed by peers. However Christopher’s spirit shone through and he somehow rose above it and tried to carry on as best he could with the tools he had.
? Defining Years….
The family moved to Aberdour when Christopher was 7 years old, he loved to be outdoors and thrived in the open aspects of the village, he would often be found building a gang-hut in the neighbouring woods or playing in the park on his bike. Chris developed a hands on approach which was emphasised in the interests and hobbies that he undertook those ranged from golfing, basketball, playing the drums, his love of cars and bikes especially all the mechanical aspects surrounding them.
The high school years couldn’t have been more different from those at primary, thank goodness. Once he found his feet Chris thrived in this new environment, he made new friends and socialised freely without being ‘labeled’, he was of course like many teenagers and didn’t want to bring attention to his educational issues, and therefore would often refuse additional help offered especially after 2nd year as he wanted to be treated just like every other peer. He excelled beyond our expectations and achieved many of the same grades as his bother and sister, Chris had an air of confidence about him at this stage of life and nothing would hold him back. After achieving reasonable grades Christopher enrolled on a Mechanical Engineering course at Carnegie College based in Rosyth, he loved this new independence for the short space of time it was allowed to him…
? The Fight…
It was the summer straight from leaving high school, that Chris started to notice the symptoms of Hodgkin’s Lymphoma and on Friday the 2nd September 2011 our fears were confirmed. Christopher was offered the opportunity to participate in a clinical trial for chemotherapy treatment which wouldn’t start for six weeks until he’d turned 18.
Things ran relatively smoothly during the start of the chemo, but a routine scan showed that the treatment wasn’t shrinking the tumor in Chris’s lungs a quickly as expected. The next step was to escalate his chemotherapy, this began to take it’s toll on Chris and he began to suffer sickness and become lethargic. P.E.T. scan in February 2012 showed that the chemo had worked and there was a small mass of ‘scar tissue’ left, he underwent one more round of chemo in March and thought life would return to normal. He was delighted that the steroids had given him some bulk and was looking forward to working out.
? The Relapse…..
In April 2012 Chris began to complain about a pain in his left hip, we thought it was a strain due to the level of working out he was attempting. This pain continually worsened and our concerns were highlighted to Chris’shematology consultant , he decided to give Chris an x-ray of his pelvic area during the routine screening check-ups. This x-ray showed that Chris was suffering from Avascular Necrosis of the hips, unfortunately a side effect from the high dosage of steroids, this meant the head of his themer bone had began to crumble and wasn’t sitting correctly in his hip socket, Chris was looking at having to get a double hip replacement once in remission.
As we awaited the other results to come back Christopher became really unwell suffering from bone pain and severe itching. On Saturday 2nd July 2012 he was admitted into hospital and come Monday morning his consultant broke the news that Christopher’s cancer had relapsed. Within that week Chris has been fitted with a Hickman line and biopsies taken of lungs, bone marrow and chemotherapy started. The aim of this particular treatment was to reduce the cancerous tumor in Chris’s lungs in-order to take him onto a Autologous stem cell transplant, which would wipe the cancer out of his system. Chris as always would ask what the odds were of this particular treatment being successful and was told 85% ….this would be his focus for the hell he was to endure.
It only took until August to discover that his treatment had failed once again, the tumor had grown in his lungs and cancerous nodes were picked up during a scan on his spleen. The decision was made to carry on with harvesting Chris’s stem cells but his brother, Steven, was also a match so he too harvested stem cells to be able to give Chris an Allogeneic stem cell transplant. Through out October the chemotherapy regime was changed and harvesting of Chris’s stem cells was underway, this took two attempts as the chemo had taken it’s toll on Chris’s body, he was in a very bad place suffering from neutropenia which meant he had to be admitted into hospital on a regular basis when his blood counts dropped in case of infections.
Over those last few months Chris had undergone four separate regimes of chemo, and every time he’d ask his consultant what the odds where of each treatment working, needless to say the longer this process carried on the more the odds were against him, this still would not deter Chris’s from giving up it just took him a little longer to motivate himself.
December came…it was to be ‘D-Day’ for Chris as he was due to undergo his stem cell transplant on the 12.12.2012, on the lead up to this he was scanned again…yet more devastating news nothing had stopped or shrunk this cancer in it’s tracks, it was still spreading! I can’t imagine what must have been going on inside Chris’s head…. things began to take their toll on Chris he found it hard to stay focused even when it came to taking blood samples his mind set had totally changed, he was beginning to shut down on us.
? The Last Chance….
Christopher was offered a new drug called Brentuiximab this had just been licensed in the UK but had shown great results in the states. Chris grabbed this opportunity with both hands and although the odds were less than 50% of success what other option did he have…. he was back on the motivational bandwagon!
Treatment started just after Christmas and he had three infusions given on a 21 day cycle, he was due to be scanned after the third cycle and if there were no major side affects and the cancer was responding he would be able to receive up to 7 cycles. In order to get the stem cell transplant lined up it was important that his scan showed some amount of shrinkage.
Thursday 7th February we where scheduled to meet the team behind the transplant…it’s a date that will stick in our minds for a very long time, this was the date Chris was told he was terminally ill, treatment had failed and that there was now a 2 cm lesion on his liver, a 12 cm tumor in his lungs and nodes showing in his stomach and spleen. All the hospital could offer now was palliative care in the form of some light chemotherapy and radiation treatment. Once Chris had digested this news he’d made the decision that he wasn’t going to give up without a fight in his words “I’ve not done a fraction of the things a teenager should have done at my age, there’s no way this cancer is going to win”. We scoured the web looking for other treatments in the USA and Europe, it was then we discovered the Christie in Manchester a world renowned cancer specialist centre. After a consultation with them they gave Chris more hope to hold on to by telling him that they were confident that they could get him to a stem cell transplant with a new combination of chemotherapy starting with three weeks radiation treatment in March, followed by the first cycle of chemo on 1st May.
? Our Cookie Crumbled…
Words fail me when I try to express how much Christopher fought his battle, he would never wallow in self pity but didn’t suffer fools gladly either! His brother and sister had organised to run marathons on his behalf to raise sponsorship for charities that were close to cookies heart, he stayed so strong and would never let us know just how badly he was suffering in the last three weeks of his life just to keep them motivated.
Yet again he had to undergo scans to see if this latest round of treatment had worked, it was so difficult to find a vein and this caused everyone such distress during this process.
Our son was crumbling before our very eyes and time was running out for him. 27th May brought the news that his body couldn’t handle anymore treatments and was beginning to shut down… we all wept as we digested this information and even then Chris just wanted to know what the next plan was, even at this stage he wasn’t willing to give up his fight. With his liver being so badly effected there was no more hope, that Wednesday was the last conversation we ever had with our son, and over his remaining days he still fought against doctors and medical staff expectations in his own unique way.
He’d once said to me ” I want to be that ‘miracle’ you hear about, that person who keeps fighting against all odds, and comes out winning”. He will always be such an inspiration to us and all those who were fortunate to have had Christopher touch their life in some way.