Mel's Message of Hope

Mel Degiorgis from Billingham, England

In autumn of 2004, my second to the last year of school, I had been sleeping a lot and had been getting painful headaches that had been getting worse for two years. It got so bad, my concentration was going and I was often sent home from school in excruciating pain. My colour vision was slowly going and my optician found that I had pale optic discs so I wanted to see a specialist. I was told by a neurologist on three different occasions that I was just a child complaining of headaches, and sent home on anti-depressants. My mam insisted on a brain scan and the neurologist reluctantly agreed to order one. The doctor called to say there was an abnormality on the scan and that we needed to pack a bag and go to the hospital the next morning. They admitted me to a ward and ordered more tests, including a more detailed scan to see exactly what the problem was. The neurologist came back the next day and told me and my mam that I had a brain tumour. I was devastated!

This is something everyone worries about but never actually thinks it's going to happen to them. When my dad walked into the room and we told him, he sat on the bed next to me and cried while rocking me back and forth. I was shocked and asked to see my scan -- the tumour was huge! It grew along both sides of my optic nerves and expanded into the pituitary gland (controlling hormones) and hypothalamus (controlling many functions and needs). The doctor said that I probably had this tumour since birth and was lucky that I hadn't lost some or all of my vision.

This optic nerve glioma, also known as juvenile pilocytic astrocytoma, was in me all this time and nobody knew. Even worse, I had been checked for all those problems in the past and nobody paid attention. So there I stayed for the next night until the neurologist said we needed to go to Newcastle to a lovely doctor who would do some more tests the next afternoon. In the children's ward an MRI and x-ray were done and the doctor said a biopsy would be needed to verify the tumour type. On the morning of 14 November I was taken to operating theatre. I asked for gas as I had a terrible fear of needles. I was out after two breaths. When I awoke a few hours later I felt like I had been shot and was screaming and crying from all the pain behind my eyes. My mam was holding my hand and trying to calm me down. I was finally given a dose of morphine that would have knocked out a fully grown man! I spent the next two days recovering on the ward, sleeping most of the time. I even needed my stomach pressed in whilst propped up to use the bedpan -- it was weird, feeling so weak! I came round okay and was able to go home. A few days later we saw the tumour doctor in clinic and he told us that I had a low grade optic glioma, a slow growing tumour that grows along the nerves behind the eyes. My mam was relieved because she thought it was not cancer but the doctor told us it was. My mam and I started to cry as the doctor continued to say it was far too risky to operate on my tumour, and that after consulting with colleagues, she would let us know the best way to proceed. We returned to clinic a few days later and were told that radiotherapy was my best option. I started on December 29, 2004 and every day for six weeks I traveled to Newcastle for treatment. In the second week I started feeling sickly and losing my hair. Luckily I had thick hair so the Mohican style flops covered the bald spots rather nicely. It was a relief when the treatment was over but then I went back for check-ups and started on medicines for nausea, headaches and drowsiness.

My appointments got fewer, around once every two weeks, and I was still not back in school so I went to a retreat set up by a charity in the Hexam countryside for week long breaks as I recovered. Everything was going great until my left leg became swollen in January. I was diagnosed with plantar fasciitis (damaged nerves in the arch of the foot and ankle.) Apparently there was no treatment for it, and I was told there could be extreme pain for six months whilst it healed. I went home, unable to walk. After a week, while staying at my friend's house, I woke up to my leg and ankle more swollen and darker in colour. My mam took me back to the hospital and saw a different doctor who admitted me and ordered blood tests. He diagnosed me with deep vein thrombosis, which can be caused by surgery or cancer. A scan showed that mine had spread from my calf to my stomach. I was taken to the ward and fainted on the bed after I went to the toilet. My arteries were tested for blood samples and I was put on a heart monitor and oxygen mask and moved to a cardiac ward. A couple days later I was almost off the oxygen and feeling better. After breakfast I went for a walk to the toilet and collapsed again. A nurse laid me flat then I blacked out. When I came to, I was surrounded by nurses and doctors and tried to speak, but couldn't. I saw big black shadows and a white light and I couldn't move or breathe. Turns out my blood clot went to my lungs and caused me to faint, then on March 10 a massive clot broke off and got lodged in my heart. I was clinically dead for one hour and 40 minutes, while doctors and nurses continually checked for pulse and gave me CPR. My liver and kidney were failing and there was fear of brain damage and my chances were one in 200 that I would fully come back. Eventually I was stable enough to move to intensive care where they gave me clot-bursting injection into my chest. Six days later I was out of intensive care and in a renal unit where I had three sessions of dialysis and a whole ten litres of fluid was removed from me! I then spent the next three weeks in the teenage cancer clinic. It was brilliant news that all of my vital organs were mended. I went home in a wheelchair four weeks after being admitted, two stone lighter and 100% detoxed (ha ha)!

I am now walking, learning how to remember again, my clot has disappeared, and most importantly, my tumour is shrinking. I have raised 8000 pounds for charities and the hospital that looked after me. I am back to my normal self, except that I am stronger (and my mam doesn't mind my stubbornness -- ha ha). My memory is still bad and there is no telling how bad my eyes will get but I continue to think positively. Just before I had "come back to life," all of my relatives either saw me or heard from me and were strangely comforted by these unexplained visions -- I feel very lucky and privileged by this whole experience. I just want you readers to know that when something just doesn't feel right you need to persist until you get the proper diagnosis and you can still kick ass even when you are at your lowest ebb -- just believe in yourself! Thanks to all the doctors that save lives everyday and my family for being such angels during a traumatic time. I would love to read more stories from people who have been through a similar experience

-- all my love,
Mel Degiorgis.

Mel is 16-years-old and lives in Billingham.

This story was written for the Childhood Brain Tumor Foundation, Germantown, MD.

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