Iwan was first referred to Sheffield Children's Hospital on 29th September 2009. He had been to a friend's birthday party at a roller skate park on the previous Friday and had fallen down and hurt his wrist. Over the weekend it didn't seem to get any better so I made an appointment at our GP for first thing on the Tuesday 29th September.
Our GP sent us to the Rotherham General hospital for an X-ray as I had also noticed that over the previous few weeks Iwan's eyes had become more protruded and I was worried he may have a thyroid problem so I mentioned this also to the GP who also asked Iwan to have some blood tests whilst at the hospital and return to the GP in two weeks for the results.
Initial Diagnosis and treatment
That afternoon we received a call from our GP surgery saying that we needed to take Iwan straight back to our GP with an overnight bag as there seemed to be a problem with the blood test he had had that morning and he would probably need to go to hospital for further tests. Obviously we were very concerned as to what the problem was but we were totally shocked when the doctor said that there was a high chance that Iwan was suffering from leukaemia. This was totally out of the blue as Iwan had not felt ill previously and had never been ill! We were told to go straight to Sheffield Children's hospital ward M3 where Iwan would be admitted for further tests- we arrived at 4pm and by 10pm it was confirmed that Iwan had acute lymphoblastic leukeamia. We were all devastated.
By Thursday 1st October 2009 Iwan had a treatment plan. He went into theatre and had a portacath inserted into his chest, a bone marrow sample taken, a lumber puncture and received his first chemotherapy. He was in hospital initially for a week having intense treatment and was really poorly.
Set backs, bone marrow transplant and recovery
Iwan took all this particularly hard as he couldn't understand why he needed the treatment having been 'perfectly fine' prior to the blood test. He lost weight and withdrew into himself and wouldn't talk to anyone. Just as we were coming to terms with what had happened and what the treatment would be - chemotherapy only - we were given another devastating blow as further tests revealed that Iwan was also suffering from Philadelphia Chromosome which would make it difficult to treat with chemotherapy alone. He would need a bone marrow transplant to give him the best chance of survival.
After three courses of chemotherapy with lots of ups and downs Iwan was ready for his transplant. Iwan's younger brother, Samuel, who was six at the time agreed to have tests to see if he was a match. Thankfully he was a near perfect and the transplant was scheduled for 25 March 2010. Iwan went into hospital on 18 March and received total body radiotherapy at Weston Park hospital twice a day for 4 days prior to the transplant on 25 March. Sam was admitted to hospital the night before the transplant and taken into theatre to have his bone marrow harvested first thing the next morning, Iwan received the stem cells that afternoon.
Sam was very brave and everything went well and after another night in hospital he was allowed home. We had been told that Iwan would be in isolation which could last for up to eight weeks depending on recovery and had prepared for the worst but Iwan had no complications and went from strength to strength and by day 10 he was allowed to go for a short trip to the park across the road. By day 12 he was allowed home! We were told it was one of the shortest isolation recoveries! It was truly amazing and Iwan even made it back to school three weeks before the end of term which was really emotional as it was his last days at Junior school and was able to say goodbye to all his friends and teachers.
Relapse & second transplant
Iwan continued to recover well with no complications and the nightmare of the last year seemed to fade away and become a distant memory. He began secondary school as planned and in October 2011 we had the OK from his consultant that we could take Iwan on holiday. We had an amazing time in Florida and Iwan was able to do all the things he had wanted like visit Harry Potter land at Universal Studios, swim with dolphins and visit the Kennedy Space station. At this point everything was perfect and in March 2012 Iwan was two years post transplant and cancer free!
Iwan was then transferred to the late effects clinic at Sheffield Childrens Hospital where he would only be seen twice a year for check ups. We were so relieved. Unfortunately in April 2012 at a routine eye appointment, the eye consultant picked up an anomaly which could have possibly been Graft Versus Host disease (GVHD) due from the transplant.
We made an appointment with Iwan’s Haematology Consultant who performed further blood tests which revealed that the leukeamia had returned and that Iwan would need to undergo further chemotherapy and a second bone marrow transplant, this time from an unrelated donor as even though his brother Sam had been a near perfect match, it wasn’t strong enough to override Iwan’s own system which had eventually led to Iwan’s relapse.
The race was on to find a matched donor and in September 2012 a donor was found in the form of a 28 year old woman from the East Coast of America. Iwan had his second transplant on 4th November 2012 and as before Iwan responded well and the transplant was initially a success despite a few more complications with GVHD and slight infections.
At this point Iwan had missed almost two years of school but he soon got back into it and amazingly he was still in the top sets in all his subjects.
Post-transplant complications and second relapse
In December 2013 Iwan developed an antibody in the donor cells which attacked his red blood cells and made him become severely anaemic, requiring several units of blood per week. Iwan was given Rituximab to try to irradicate the antibody but in doing so it knocked the donor marrow cells down to just 20% allowing Iwan’s own cells to be produced and therefore allowing the leukaemia to return. Once again we were devastated as we hadn’t been told that this was a possibility prior to the treatment. Had we known we would never have agreed to give him this medication.
We were told that there were still many options of new drugs we could try and we tried all the ‘inibs’ available. Some were quite successful to begin with but then Iwan would become ‘immune’ to them. Things went from bad to worse when we were told that his leukaemia had mutated and he now had two different kinds!
In January 2015 Iwan’s leukaemia level was back on the increase and he underwent two more rounds of intense chemo. Although Iwan had been absent from School he managed to take his GCSE exams in June and got 3 A’s in sciences, A* in computing and B’s in maths and history. We were so proud of him.
In September 2015 he enrolled at Thomas Rotherham College on A level courses in physics, maths and computing. Unfortunately he has only managed one day in college due to the treatment he is still undergoing and now looks like he may not be able to continue on the courses as he has missed so much time due to his health. This has severely affected Iwan’s confidence and caused low moods. He was looking forward to starting college and looking forward to eventually taking the physics degree at university.
Whilst Iwan was undergoing his second bone marrow transplant in Nov 2012, there was an article on the local Calendar News about a young girl, Emily Whitehead, from Philadelphia, USA, who had the same leukaemia as Iwan. She wasn’t responding to any treatments and her organs were beginning to fail as the disease took over. She was put on a ‘new’ revolutionary treatment- called CAR T-Cell therapy- where Emily’s T-Cells were taken from her blood and then genetically modified to attack the leukaemia cells. This was her last hope but was a success and Emily is now 3 years cancer free and doing well. I remembered this story and asked our Consultant about such treatment and whether it was available in the UK and if Iwan would be eligible for it.
Unfortunately we were told that although Iwan would be eligible there was nowhere in the UK that were running the trial and it would be a few years down the line before it came here, Iwan doesn’t have two years to wait. Determined that we would try our hardest to get Iwan this treatment we contacted several hospitals in the US to see if Iwan would be accepted on to their treatment trials. He was successful at Seattle Childrens’ Hospital and so an application to the NHS was submitted with the agreement of our consultant.
Unfortunately our application for funding was unsuccessful as although this was a phase 2 study, it was still a fairly new treatment and as such the NHS would not support the cost. Undeterred, we have begun to fundraise to meet the costs of sending Iwan to the US to receive this life saving treatment. Our target is £200,000 to cover the treatment and living costs whilst in America as he will need to stay over there for at least 4 months. Time is running out and we need to raise this as soon as possible.
We currently have £36k from various events we have held over the past few weeks and we have more in the pipeline in the coming weeks but we are still a way away from our target. Please help save Iwan and help him become cancer free - he deserves this chance after everything that he's been through.
You can follow Iwan's progress on Facebook and can also make a donation to his treatment on Helen's Virgin Money Giving fundraising page.