This is Toms Story. Rest In Peace Thomas William Hart August 19th 1989- May 6,2013 Tom had a mole on his scalp for as long as his mother Julie Turac could remember.and at about the age 6or 7 it began to grow,and by 9 she had taken him in out of concern,but the Gp said that it was some kind of wart thing,(like a cauliflower)...Just as most of us, Julie did not know about Melanoma or skin cancer much,and trusted the doctor,however every time that Tom got his haircut his mole would bleed. Julie had to take Tom in several more times to the GP before finally getting a referral to a dermatologist,and on the first visit Julie could feel something was really wrong. The derm called in nurses to take photos,and then Tom was refereed to a plastic surgeon,where the mole was then biopsied ,only to have the results be sent home in a letter stating that Toms results showed that he unfortunately had Melanoma at 12 years old(however not given a stage) Tom would go on to endure many surgeries after being diagnosed,3 on his scalp,removal of lymph nodes,they removed third of his lung,a tumor from a bone in his leg,and 2 neurosurgeries..In addition he also had stereo tactical surgery to his head. In the 10 years of fighting this beast, Julie was never given the information that his Melanoma could be fatal,and was only given a stage 4 diagnosis in the final month. Tom received only 2doses of IPI,as he had suffered two massive brain bleeds during the entire process. Tom put up an incredible fight,and gave it all he had,finally earning his angel wings on May 6th 2013 at only 23 years old. Julie feels very strongly that there were to many mistakes made along the way,and that because of the HORRIBLE lack of awareness and education , she was uninformed on what options they had ,and how to go about this the best way,she feels strongly that the medical profession was not proactive,and aggressive enough,and truly dropped the ball on the most precious thing in the world to her. (This was a letter that was actually written by Tom describing his journey in much more detail . ) Thomas William Hart 19/08/1989. At age 12 after multiple visits to the doctor by my mother concerned about an abnormally raising mole near the crown on my head, it was decided I should be referred to a dermatologist named Dr. Verma whom we went to meet. After examining me he was quite clearly concerned and called in some others to view the mole, and take samples and pictures. Not satisfied with just this he decided it would be best to book me in to a day case unit and have the mole removed, explaining this would be a relatively simple and painless procedure. The removal was performed easily enough and I was out of hospital later that day. I managed to put this to the back of my mind as you do as a 12 year old boy, but not for long. The following week my mother and I went to visit the surgeon, Dr Graham Perks, who removed the mole, to collect the results. He had the unfortunate duty of informing us that the results had returned and that I had been found to have a rare type of skin cancer. Being a 12 year old boy I could not possibly fully comprehend the implications of what had just happened but I felt completely crushed, and from my mothers tears and utter disbelief and devastation I understood well enough what was just said. We were told that it was now necessary to remove and examine the surrounding area of tissue, which would leave me with a large circular scar about 4 inches across near the crown on my head. And to replace the removed tissue, a skin graft from my upper right thigh would be required. The surgery was completed successfully and I was told the news that there was no sign of the cancer having spread to the surrounding tissue, which should hopefully indicate that it had all been removed. After recovering and turning 13 I was just getting in to secondary school, but had missed a lot of the beginning because of all of this, meaning I already felt slightly out of place, and having such a large and obvious scar was having a massive impact on me. People were naturally curious and were always asking questions about the circumstances, and why I was the only person allowed to wear a hat inside school. I often felt completely alien, which made settling in to an already new and daunting environment often feel impossible. I was then offered the opportunity to have reconstructive surgery to reduce the size of the scar by Dr Perks, who was very much aware of my circumstances by now and how self conscious this was all making me feel. Because of the position of the scar on the corner of my skull, he explained the scar would stretch over time whilst healing, meaning to have a genuine reduction in size I would need to have multiple operations, which would inevitably mean spending time in and out of hospital, and missing more school. At 15 and multiple reconstructive surgerys later, I was due to have what would likely be my last reconstruction for now, as while the results so far were an improvement they were not quite what we had hoped for, despite trying various techniques, including pumping a balloon up gradually under my scalp in the weeks building up to surgery, in an attempt to loosen the skin before it sewing it up. But due to the position of the scar and the fact I was still growing it would keep stretching out again. So we agreed to take a break until a later date in life, when I had stopped growing and finished school. Before the final reconstruction surgery though I found a very small hard lump underneath the skin behind my right ear. As I was already scheduled to go under the knife, it was decided that taking the lump out and sending it for a biopsy would be the for the best. The surgery was completed and went to plan, but the results of the biopsy had came back also, and so had the cancer. I was told this was likely from tiny fragments that had trickled down from the original tumour removed from my scalp. I was quickly booked in for what I was told would be a large surgery to remove the right lymph nodes from my neck and shoulder, starting behind my ear to near the bottom of my collar bone, and that unfortunately it would inevitably leave not just a large scar but permanent damage to the nerves inside the area, due to them being cut and damaged during the procedure. The operation went as expected and a few days later when I was in bed recovering in the ward with my mum I was visited by the professor of oncology, Professor Poulam Patel, whom I was just becoming familiar with at the time. He sat down and gladly informed us that there was no sign of spread in the removed tissue. Despite being in a lot of pain and discomfort I felt a massive relief. After a long recovery I was back on my feet and becoming a young man ready to approach my exams and the final year of school life. Though unfortunately at this point achieving much academically didnt seem realistic, due to the many previous surgerys and recovery periods I had fallen substantially behind at school, and the few things that were sent home for me to revise seemed totally irrelevant, due to missing most or all of the relevant lessons and discussions. Having left school I begun a full time engineering course at college, finally feeling like I was able to start thinking about long term personal and professional prospects. On top of this I had just witnessed my sister give birth to a healthy young boy, on my mothers bed!. Shortly after though, I went to visit Professor Patel to receive the results of a regular scan. And for the second time now he had the task of informing us that is was bad news. There was a shadow inside the lower third of my right lung, which was likely to be the melanoma, and if so another large operation to remove the lower third of my right lung would be required. I was told that while it would be a complicated operation I would be in safe hands and out of hospital after around 1 week. A few days after the operation I was in the ward recovering and once again visited by Professor Patel, who told me that after examining the tissue it was found to be the melanoma, but it hadnt been found in the surrounding area and should now all have been removed. I was again extremely relieved that it had not spread, but older now and after being told the same thing twice before, I was very apprehensive to make too much of this set of news. The recovery afterwards though was a disaster, after detaching me from a suction machine my lung randomly collapsed. After weeks spent trying to re-inflate my lung through various painstaking techniques, and multiple visits back to theatre to reopen the wound, it would devastatingly keep collapsing over and over again. A final trip to the theatre finally revealed the cause of the problem as being a small hole at the bottom of my lung that had not been stitched together properly during the original operation. After waking up in the ward later that night I was in total agony. This was due the epidural having missed the intended point, and instead of my upper body it had completely numbed my left leg. After suffering throughout the night I was told multiple times to stop being mardy by the nurse on duty, until eventually 6am rolled around and the staff switched over, at which point an anaesthetist was called and the mistake realised. In total what was supposed to be 1 week and 1 surgery turned into 1 month of multiple complications and surgerys. Due to needing the suction machine around the clock I also did not once leave my bed area for nearly 2 weeks. I had never been in so much pain, and was left feeling mentally very fragile. At 17 and after recuperating I was back on my feet and starting to feel positive, and little did I know was about to go 5 years of check ups and results with the Professor hearing the priceless set of words, “all clear”. During this 5 year period I turned from a teenager in to a young man in about every way you would expect. I became very health conscious and took a deep interest in to nutrition and exercising both of which became a large part of my everyday life. I would also gain passions and hunger for scientific knowledge to a degree that I never thought possible at a young age, of Molecular behaviour, the Cosmos and Medicine in particular. I also had the totally new responsibility of helping my sister raise and teach a young nephew who is without a father. Little did I know that this responsibility would soon become my world though, as spending time and watching him simply develop from baby, in to a walking and talking young man, learning and witnessing the world, has been by far the most humbling, enlightening and enjoyable experience I am ever likely to have. This was the longest Id ever been clear and is the only time in my life that I have ever truly felt a sense of content, happiness and freedom to live, without the daily restraint of what may be creeping up around the corner. It was now around Christmas 2011 and more than 5 years since my last diagnosis. I noticed a lump start to form inside right shoulder and raised the concern with Prof. Patel who pushed forward my regular CT scan. Shortly after it was once again down to the Professor to sit me down and give us another dreaded set of results, which were as bad as I could of imagined being told that day after such a long period of absence. I was told that not only had the cancer returned in my shoulder but it had also been found in my lungs and kidney, and that surgery alone would not be sufficient this time, so I was likely going to need a combination of different techniques including radio and chemotherapy, both things that I had never experienced before. First I was treated with a chemotherapy named dicarbisine, to which I reacted very poorly, feeling extremely ill and vomiting regularly during the administration. After 3 courses of the Dicarbisine the Professor told me of a new trial drug by the name of Ipilimumab which uses a technique called immunotherapy to assist the bodys own immune system in fighting the disease. I was willing to try anything at this point, but didnt know what to expect. After being accepted to undergo 4 courses of treatment scheduled once every 3 weeks I began the trials and to my surprise things went very smoothly, I had no side effects caused by the drug and when compared to my experiences with chemotherapy was delighted at how well I felt in between periods of treatment. After treatment was finished progress was finally beginning to show and the Ipi was beginning to work in reducing the tumours. This was the first positive news we had had received since being diagnosed. Not only was the Ipi having the desired effect on the tumours but it had a large effect on me and my ability to function, stay active and live a proper healthy lifestyle aswell. Physical activitys like exercising and walking the dogs with my sister and nephew became an enjoyment again and a daily occurrence, instead of a painstaking and intimidating prospect. My experiences with Ipi were nothing but positive, and to my amazement I experienced no ill side affects. After returning from a much needed break with my family in Spain, I returned to meet the Prof who had my latest set of results, and it was more bad news. The cancer had now been found in my brain. I was told of a targeted radiotherapy in Sheffield called stereotactic radio surgery that would be suitable for me and I underwent the treatment in August which was my first ever radiotherapy, and fortunately went very smoothly. I was then booked in for surgery to remove the larger central tumour in my brain. We went to meet the Surgeon who would be performing the operation, Dr. Basu, he sat me down and loaded my latest MRI scan, which was 2 months old now and needed updating before surgery to make sure the circumstances hadnt changed. He went on anyway and explained to me his plan, and that due to where it is located there will be around a 5% chance that I would suffer a stroke on the operating table, and an even more daunting 1-2% chance that I would not wake back up. I had an MRI scan the following day and was due to have the surgery on the 15th assuming the scan results didnt change this. I called in to confirm I was able to attend and was told I was first on the list and should come to the ward to stay overnight. Still awaiting the results of the MRI and whether surgery was even able to go ahead, I made my way to the hospital and after a while on the ward being checked over, received a phone call from Dr. Basu saying he was coming to see me on the ward with the latest results, and that we had to make a decision about the surgery. Facing the biggest operation of my life and given the circumstances I was naturally very nervous anyway, and was now left wondering what exactly we were about to see 3 months after the previous scan. Dr. Basu arrived and assured me it was good news. Given what appeared to be growth between the last results, I was at this point considering good news to mean that there had not been any changes and basically it was still operable. He invited us to see the results and loaded 3 MRI scans. Firstly from July when the cancer was originally found in my brain. Secondly the results from October, 2 months after I had received Stereotactic RadioSurgery, which appeared to show growth in all areas. And lastly the latest results which we had all been anxiously waiting for, and to my surprise and delight he went on to explain that the smaller tumours are no longer visible and have disappeared over the last 2 months, and that the larger tumour is dyeing or dead also. It was then explained to me that this, and likely the growth in the previous scan, is due to a swelling process called Radio-necrosis caused from the Sterotactic Radiotherapy I had received in august. Despite this brilliant news Im now still left facing a recourse of a chemotherapy drug that likely had little effect if any, and made me feel horrendous physically. I have also just finished a course of 4 radiotherapy treatments to the lymph nodes on my shoulders, which due to all of the tangled and damaged nerves from the previous lymph surgery in my right shoulder interacting with the tumour, causes me severe neuropathic pain, and I’m now unable to perform almost any task that involves carrying or reaching without intense burning and shooting pains up my neck and down to my shoulder. Added to this my mum having to leave work to look after me full time, having the funding of a second course of Ipi rejected and my pain getting worse by the day, we are now at rock bottom, and in a position where my mother is left considering her only option to be selling the home she has lived in and worked the last 30 years to pay for, to give her only son a chance at life. Never in my life have I written any of this down let alone everything and doing so has drained me. A short letter has turned out to be one of the most difficult and emotional tasks that Ive ever taken on. There are many details Ive missed out, but I have tried to keep it short and relevant while still including everything. And I can now do little more than sit and wait in the hope that after reading this, and the rest of the appeal, it will be enough to change the decision to deny a second course of treatment.
Posted on: Mon, 19 Jan 2015 03:48:58 +0000