My 3 year old son Oliver has a rare cancer called Langerhans cell Histiocytosis, which is where Langerhans cells (normally found on our skin) spread to other parts of the body and attack them. In Oliver's case the LCH has attacked his bone - by eating away small holes in his skull, his gut, his liver, spleen, soft tissue around his eye and skin - by causing open sores under his arm pits and severe cradle cap.
It was a complete shock when Oliver was diagnosed with something so serious, in February 2014. All I can remember from that day, is the doctor telling me he would need chemotherapy and feeling absolutely devastated. Oliver had been unwell for some weeks before he was diagnosed, he had the severe cradle cap, armpit sores and kept getting ear infections. He then became uninterested in playing and stopped crawling and generally wanted to sleep. After numerous GP visits we ended up being sent to our local hospital and from there he was diagnosed very quickly, I know many people have not been as lucky as this.
After many scans and tests to confirm the diagnosis, at 20 months old Oliver had a port a cath fitted and started chemotherapy at Addenbrookes Hospital in Cambridge. He had a drug called Vinblastine once every 3 weeks as well as a daily chemotherapy at home. He also had pulses of high dose steroids, which really changed his behaviour and moods, as well as his hugely increased appetite! It was during this time at Addenbrookes that Oliver was introduced to the Beads of Courage programme. The beads are given to the children to signify each procedure they have endured, with each representing a specific colour bead. Oliver has been collecting his beads for 2 years now and at the moment has 1553. The first year was really difficult, Oliver was tired from the chemotherapy and caught many infections, which meant a lot of nights spent in hospital.
After a year of chemotherapy, in March 2015, Oliver finished his treatment and we thought that was the end of his journey. Unfortunately just weeks after stopping the chemotherapy, the LCH took over again and this time had spread to Oliver's liver, spleen and soft tissue around his eye, dangerously close to his brain. Oliver then started a stronger chemotherapy regime, of Vincristine and Cytarabine, as well as strong dose steroids. The week of Oliver's 3rd birthday he suffered a severe allergic reaction to the chemotherapy drugs and had to spend a week in hospital, where he was very poorly. After this the chemotherapy regime was changed and he started a drug called Cladribine.
Repeat scans and tests in August 2015, revealed that the chemotherapy wasn't working as well as it should be. This was a really frightening time as we felt that the LCH was taking over and that the treatment options were running out. Fortunately a clinical trial became available at Great Ormond Street Hospital in London, which Oliver qualified for and he enrolled in September 2015. Oliver is doing really well so far on the new drug and tests in November discovered that the LCH has shrunk by a third in the areas of Oliver's body that had been affected. The trial should finish at the end of 2016 and hopefully Oliver will be cured, unfortunately LCH can be very unpredictable and it could be that Oliver relapses again when the treatment finishes, hopefully this won't happen again.
Oliver's Beads of Courage have really helped him through his journey so far, he is immensely proud of them and they will act as a wonderful keepsake to look back on in the future. So far in the last 2 years, Oliver has collected 463 white beads, for each dose of chemotherapy he has had, 362 blue beads for each day he has taken steroids, 136 lime green beads for fevers and isolation and 125 black beads for every time he has had a needle in his skin. He also has 120 purple beads for days he has had IV anti biotics, 101 yellow beads for overnight hospital stays, 90 light purple beads for every time the community nurse has visited and 33 beads for scans and MRIs. The rest of the beads are for blood transfusions, anaesthetics, physiotherapy, ambulance rides, biopsies, catheters, dressing changes and special recognition bravery beads. Throughout all of this Oliver remains the most wonderful, smiley, happy and kind little boy and I am so proud that he is my son.
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