Scott's Dream

My name is Debbie Kelley and I've been asked several times to "tell my story". You see, however, it is not MY story. I've decided to take on the initiative, at the request of friends and family, to set up a place for people to express their support for my 13 year old son, my hero Scott Kelley. 

 

It all started in January 2013. Scott stopped eating and was complaining of severe pain in his abdomen. We had him at A & E a few times who said there was nothing wrong. We took him to our GP numerous times who also told us there was nothing wrong despite losing 4 stone in a few months. Our GP told us Scott just wanted to be skinny like his friends and he was going through puberty. This went on and on. We then thought it was from the bullying he was getting at school because of his weight. The GP then told us he was referring Scott to CAMHS (Child & Adolescent Mental Health) for an eating disorder and the fact that his whole demeanour had changed and he became a very angry boy. Scott was rapidly losing more weight and still not eating and became very ill looking. The GP still wouldn't admit there was anything wrong and said there was nothing more he could do that it was in CAMHS hands. I wasn't happy and knew there was something more sinister going on. I requested our GP to refer Scott to Paediatrics at the Royal Victoria Hospital in Belfast for further investigation which he did. In June 2013 we received an appointment with Dr Reid in the Sick Children’s Hospital. Straight away blood tests were taken and various scans arranged. Scotts blood counts went haywire but no sign of anything sinister. Dr Reid had initially put it down to a viral infection. Scotts weight rapidly went down by a whopping 7 stone and his pain was getting worse. Dr Reid was determined to get to the bottom of it and requested the assistance of a Senior Gastroenterologist. More scans and tests were carried out. It was discovered that at some stage Scott had contracted the human form of the Parvo Virus and the Epstein Barr virus and this may have been the cause of the counts being up the left. His liver function tests weren’t great either. 

 

On Monday 16th December 2013 Scott was called for an MRI scan with contrast. He had the scan done that morning and the doctor came out and confirmed a possible Hernia but that because of the fluctuation and decline of Scotts bloods did we mind Haematology doing a bone marrow biopsy to rule out anything more sinister. We agreed. That same afternoon he underwent a bone marrow biopsy. After which the doctor came out and said "great news it’s not leukaemia I do believe it’s a hernia come back and see me on the 5th January to discuss the way forward. Phew what a relief. 

 

Everything was ok....until the afternoon of Wednesday 18th December 2013 when we received a call from a rather distressed Dr Reid to inform us that we must bring Scott up tomorrow for emergency surgery as radiology had another look at the scan and what they thought was part of Scotts bowel wasn’t and haematology had another look at the bone marrow biopsy and didn’t like what they saw :-(. We went up the next morning and were met by Mr Bailie the surgeon. He advised they were 99.9% certain it was Non-Hodgkin’s Lymphoma and needed to remove the tumour in Scotts groin and send it to pathology for confirmation. Scott was prepped and underwent surgery for the removal of the tumour. We were told the results would be back the following Monday 23rd Dec. The morning of the 23rd came and went then we received a call on the Monday afternoon saying pathology would not release the results until they had a full blood picture and to bring him up first thing in the morning (Xmas Eve). We took him to the hospital and had bloods taken. We were told to go home and they would contact us. We wern’t long home and received a phone call from Dr McCartney, Oncology Doctor to say I needed to come back up to hospital right away and leave Scott at home.

 

Scott was diagnosed with Acute Lymphoblastic Leukaemia (T cell ALL) on Xmas Eve 2013 and needed immediate high dose chemotherapy. He was allowed to have Xmas Day and Boxing Day at home and we were to return on the Friday to commence his gruelling intense chemotherapy. The hardest thing I have ever had to do was come home and tell Scott. The doctor said don’t lie to him. Any questions he asks I must tell him the truth. I kept myself composed until he asked if he would lose his hair. I told him yes. That’s when he broke down and so did I. He had been growing a tail for months :-(.

 

So we went to the hospital. Straight away he was taken to theatre and a central line inserted so they could administer the chemo straight away. 8 long weeks of really high dose chemo and steroids :-( until he was allowed home to continue treatment at home with the Macmillan Nurses coming out a few days a week to administer the chemo into his line. I had to be medically trained to flush his line every other day. I had to be extremely careful it didn’t become infected and that no diseases or illnesses were brought home from school by our other little boy Zach. I removed Zach from school on authority from our GP. The chemo went on and on. Scott's hair was starting to fall out so he decided he wanted it all shaved off. Very brave. I was so proud of him. Then in October 2014 Scott's liver started to act up causing his levels to be high. They had to stop his chemo to try and get to the bottom of it. After a month or 2 they decided to put him back on a small dose of chemo as they still needed to try and fight the cancer. The scans showed signs of liver damage and what looked like scarring of the liver. The week before Xmas 2014 they brought Scott in to remove a sample of his liver to send to Birmingham Liver Team to determine diagnosis. Months went by...no results...

 

On Wednesday 8th April 2015 we attended the hospital for Scott's usual blood tests. They advised the results were back from Birmingham and Scott has now been diagnosed with Chronic Liver Disease cause unknown. They arranged an emergency MRCP Scan for Tuesday 14th April to try and determine cause and if they can treat it or not and if at some stage he may need a liver transplant. At this stage they can’t confirm. We await the results......

 

Scott hasn’t said much but when the doctor diagnosed the liver disease too, he said please can you say it’s not serious to which the doctor replied Scott I can’t :-(.

 

Scott has now been diagnosed with Chronic Liver Disease too which they think he may have been born with.  They dont know if his liver will survive the rest of treatment but we just take it day by day. 

 

We are in limbo at the moment with the unknown and there are so many things Scott wants to do and we don’t know at this stage if he will be able to.

 

His lifetime ambition is to meet the players from Manchester United Football Team and to play with them. I’m left thinking is this possible? How?? I can’t afford to take him to a match let alone meet the players. This part of his dream has come true as thanks to the lovely Zena McNeill Scott will be having a Dream Day with Man Utd in the new season where he will get to meet and have lunch with the players. 

 

He wants to go to Florida to Universal Studios but the consultants said no as he can’t do long haul flights for at least 2 years after the end of treatment. At this stage I don’t know when that will be the road is long but if all goes well he will be for America as soon as they say he can travel he says failing that he would settle for a nice caravan somewhere.  I cant work as I am Scotts carer and financially I can’t give Scott everything he wants and trying to keep an even balance between Scott and my other two boys Zach (11) and Ben (2) is extremely difficult. I need your help. Can anyone out there please help me make Scott's dreams come true? 

 

In addition....

 

Prayers, prayers, and more prayers! Prayers of thanks, to start. Thanks for the good in your own life. Thanks for medical staff and technology. Thanksgiving for incredible people who have helped us along. The Staff at NICFC and Clic Sargent. 

 

AND thanksgiving for Scott and his amazing, courageous powers to blast cancer right out of his body! He is the glue that keeps our family together! He has such a spirit...even on his bad days.

 

This is where this comes in...me...the worried mum...and GoFundMe. They ask for a money goal...I don't know. Seriously, I don't know. I just know I've had too many requests for a place to put emergency funds from people who care....from people who know what awaits the next few years. You are amazing people and we are lucky to have you in our lives!!! Huge thanks to all who have prayed and donated and continue to support xx