Choroba, która zjada Mateusza

Matthew is a 14 year old school pupil. Until recently he was a strong and happy child who achieved great results at his sports school. It’s all changed since a disease took over his life causing pain and grief. Today he can hardly walk, drags his feet and isn’t a boy he used to be.

Mathew is unable to lift his swollen body. His skin looks burnt, peels off, is covered in blisters and sores that never heal. His body is wrapped in bandages soaked in antibiotic to ease the pain but he still suffers. There are no mirrors on the hospital ward so Matthew can’t see how the illness has changed his appearance .He doesn’t need to, he can feel it…..This has been his life since he became diagnosed with HLH.

It all started when Matthew contracted pneumonia in October 2014. It lasted much longer than expected and no treatments proved successful. Matthew’s heart became enlarged and he had to undergo pleural drainage treatments. He constantly suffered from high temperatures, of over 40 degrees Celsius and no medication seemed to help to combat it. Due to his immune system poor response to treatments, Matthew was taken to a Cancer Ward where HLH examination was carried out. Soon after 4 out of 8 HLH symptoms were confirmed. A doctor made the decision of chemotherapy treatment and went on to explain to boy’s devastated parents that there was no time to waste.

Chemotherapy meant to stop uncontrollable over-production of white blood cells known as histiocytes and lymphocytes that can lead to organ damage and tumor formation. HLH cause over-production of histiocytices and lymphocytes which attack both bad and good cells leading to an inflammation that never heals. In the process natural killer cells become inactive and don’t help to defend attacked organs. The disease progresses, spreading from one organ to another, adding to pain and suffering.

Matthew’s treatment was carried out in line with HLH -2004 protocol which means he received chemo and steroids. All this followed by recurring inflammation and high fevers. He lost his hair 3 times but he didn’t make a fuss of it as there was more to come. The real tragedy was his poor response to treatments and more drastic steps needed to be taken- marrow transplant. It was planned for August 2015 but no donor was found in his home country. A matching marrow sample was found in Spain but the potential donor sent this information to Matthew’s family: “I won’t be available for a year for personal reasons” Did he know that Matthew may not have another year to spare…? Next matching donor was found in Canada but Matthew’s condition rapidly deteriorated – he contracted bilateral pneumonia, and with his already failed immune system a simple cold could become a threat. After weighting all factors up a decision was made for a bone marrow transplant.

The bone marrow transplant surgery was successful however the illness didn’t leave quietly and two months after the operation side effects were discovered. His intestines were infected and even steroid treatment didn’t produce positive results. Unluckily, Matthew found himself among the group of 20% of patients, whose cells don’t recognise the donor’s cells and attack them until they are destroyed. This is a painful ordeal for Matthew. He is parenterally fed and suffers from diarrhoeas up to 30times a day. It makes him weaker by the hour and he doesn’t cope mentally with this vicious cycle. He can’t undergo immunosuppression because his own viruses, bacteria and fungi would turn against his body.

Despite this, Matthew’s health is not beyond help. A few years ago a new treatment – extracorporeal photopheresis (ECP) was introduced in Poland. This medical procedure is carried out by a machine and what’s more important in Mathew’s case – it doesn’t affect his immune system. Blood is taken by the machine, coagulant is added to it in special containers to separate blood contents. Then the machine collects white cells - lymphocytic foam and pumps remaining blood to the body. The foam element is exposed to UV rays which reduces the amount of over-produced lymphocytes and shorten their life, which can last up to seven years. For comparison, blood cells live only seven days. Lymphocytic foam is then pumped back into the body.

Matthew is due to start his first of 30 treatments required in the first half of 2016. Each treatment costs 10,000 Polish zloty which is not covered by national health service. This is far beyond affordable for Matthew’s parents so the procedure gets delayed. What’s more, just a few days before scheduled photopheresis doctors discovered that Matthew carried a dangerous virus of Epstein – Barr which can lead to cancer in some cases.

What’s happened to this 14- year-old boy is unbearable and we have to help his parents to get their son out of this nightmare. They also are losing faith, witnessing this unequalled battle with a disease when they  sit at Matthew’s bedside hundreds miles away from home. They keep reminding him that there’s a different life out there, his dogs waiting to play, fishing with dad, football with friends and his older brother at home waiting. These memories help him survive yet another day. Matthew dreams about one day without the illness, away from hospital, about a few hours spent at home. There’s nothing in this world he wouldn’t do to make his dreams come true. He knows he can’t give up – even when he’s too weak to open his eyes…He has to fight for his life.

Please can we not leave Matthew alone in his struggle and help him get back home – not only in his dreams.