He Suffered from a Rare Cancer Before the Age of Two. What was wrong?
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The one-year-old boy’s white blood cell levels were dangerously low. His parents were desperate for answers.
Before the age of two, Viktor Pataki’s parents discovered there was something wrong with their son. His young life was just beginning and they were desperate for answers.
Doctors discovered that Viktor had a rare cancer called Langerhans Cell Histiocytosis (LCH). The rare disease typically affects children but can also be found in adults. LCH forms when the body makes too many immature Langerhans cells in the immune system. Normally Langerhans calls, also called histiocytes, help to protect the body from infections.
But in patients with LCH like Viktor, immature Langerhans cells multiply abnormally and grow in various parts of the body, including the skin, bones, bone marrow, lymph nodes, mouth, spleen, liver, lungs, and central nervous system. An x-ray of a patient with LCH would present with multiple “bone lytic lesions” which are hole-punched appearing lesions in the bone due to the proliferation of these immature immune cells.
The rare cancer was detected in the temporal bones of Viktor’s head and changes were also observed in his liver. But even though Viktor’s family had found an accurate diagnosis, they faced significant challenges. LCH is a rare cancer, only 5% of rare diseases have treatments, and Viktor lives in Serbia, a country that is not a member of the EU and so access to treatment could have been difficult.
Fortunately, there is a treatment for Langerhans Cell Histiocytosis. Viktor was luckily able to be treated according to the protocol intended for all patients from the territory of the European Continent even though he lives in Serbia. It was a lucky break.
In the first phase of treatment, Viktor received a round of drugs as part of his treatment to fight LCH. Unfortunately, his cancer didn’t respond to the drugs. But before Viktor could enter phase two of his treatment, he was diagnosed with pneumonia. Pneumonia in a cancer patient with low immunity can be life-threatening. It was another setback.
All treatment was stopped immediately to fight the pneumonia and prepare Viktor’s body for the next phase of treatment for LCH. Viktor’s white blood cells, also called leukocytes, were extremely low. Leukocytes are a part of the immune system that protects the body from infection. These cells travel through the bloodstream and tissues in response to injury or illness and act like an army by attacking unknown organisms that enter the body. Once the leucocyte army arrives, they fight the invaders to destroy unknown organisms.
Because Viktor’s leukocytes were dangerously low, his parents were forced to give him injections of “Neupogen” at home to help Viktor’s body get stronger as fast as possible so that he would be strong enough to receive chemotherapy.
Viktor’s parents said, “If someone had told us that we would be giving injections to our child at home, we would not have believed them.”
But they were willing to do anything they could to help their child!
Viktor’s body finally became strong enough to proceed. In the second phase of treatment, Viktor then received three blocks of chemotherapy in hopes of fighting this rare disease. At one point during Viktor’s treatment, he experienced treatment-induced immunocompromise. Another setback to overcome. The wound on his hand became infected after a routine finger prick for a blood count. To check for necrosis, his parents demanded a photograph of the finger in question for peace of mind. Because of their insistence and quick thinking, they were able to save the little finger from amputation after one X-ray and one puncture. Viktor and his family fought to overcome every challenge on his journey.
Viktor’s health journey was a family commitment. Over a period of two years, they were in the hospital a total of ten times, fighting together as a family for their son. After receiving successful treatment, Viktor and his family still go once a year for regular check-ups to monitor for any changes. Fortunately, LCH has not returned and Viktor remains in remission! Viktor is now a healthy little boy, a student champion, plays soccer, is fully socialized with his peers, and is a joyful and cheerful little boy thanks to the dedication and care from his loving family and caring medical team is not only surviving he is thriving!
Viktor’s parents raise awareness that rare diseases don’t just affect the patient but the whole family as well. Parents become caregivers of their child. Doctors may prescribe therapy and treatments, nurses and staff provide the treatments, but the parent who is with the child is fully responsible for the daily care, making sure that the child is fed, cleaned, and taken care of. The caregiver has to learn to take the temperature, measure the amount of water they throw out, how important the number of stools is during the day to indicate further course of treatment, and so much more. The caregiver has to notice every change, for better or worse, to accurately convey everything to doctors who plan further course of treatments. It can be exhausting.
The family also suffers because it is often separated. New routines are introduced into daily life while trying to provide the highest quality of life for their little patient. This impacts the whole family often with severe consequences for marriage, work, friendships, and the usual things of daily like that made you happy. Instead, you are forced to appreciate other topics such as health and productive sleep, which are necessary to give you the strength as a caregiver to face the diagnosis and treatments the next morning.
This is why Rare Genomics Institute (RG) has made it our mission to give a loud voice to people like Viktor suffering from rare diseases and their families. We created the podcast “Rare and Share” to share the experiences of people suffering from rare diseases and their families. The podcast “Rare and Share” (www.rareandshare.net) is a project of a regional character since apart from the audience from Serbia, the content of the podcast can be listened to/watched/read by patients suffering from rare diseases from neighboring countries such as Croatia, Bosnia and Herzegovina, Republika Srpska, North Macedonia, and Montenegro.
Rare are many, together we are stronger.
Learn More:
About LCH on NORD: https://rarediseases.org/rare-diseases/langerhans-cell-histiocytosis/
LCH on Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/17156-langerhans-cell-histiocytosis
LCH on Orpha.net: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=389
Are there support groups for Langerhans cell histiocytosis?
The Histiocytosis Association of America provides support and education for families dealing with Langerhans cell histiocytosis. This organization is an international group of parents, physicians, and friends in search of a cure.