The 18-year-old John (renamed) from the seaside avoids talking about his illness, avoids talking about its terrible consequences, and does not want to influence the public’s attitude towards him. Stage IV lymphoma – this diagnosis was heard when John was 17 years old by him and his parents. After a whole year of treatment which gave no results, today the boy is living in hope and parents are determined to do everything to keep their son alive.
Memories with tears in the eyes
“Real man. Feels respect to everybody, never conflicts, he is calm, polite and tolerant. That is our John,” – said his dad.
Anxiety, concern and hope – these emotions prevailed during the conversation with John’s parents. The diagnosis was heard over a year ago and today’s fight for John’s life is particularly difficult for a child’s parents.
With tears in her eyes, John’s mother returned to painful memories. In November, 2018, John had bronchitis, he was coughing really heavily, so he had to go to the doctors. At the pediatric clinic, it was decided to have blood tests, followed by x-rays, ecoscopy. Within a few days, we were informed that we had to travel to Santara Hospital in Vilnius as soon as possible, that there already are people waiting for us,” – the boy’s mother said.
The results of the research heard at Santara Hospital were the beginning of the big family nightmare. At the time, juvenile John was diagnosed with Stage IV lymphoma and had been scheduled for 6 courses of chemotherapy. As the treatment progressed, the child reached adulthood and had to move to an adult unit for another biopsy. The results continued to frustrate hope in the vicious circle – lymphoma and carcinoma – two diagnoses, and today, John is the only one in Lithuania who has this form of insidious disease.
There are no nerve cells in the lungs, so the child did not feel any pain at the time of diagnosis. It was hardly possible to see the first, second and even third stage beforehand. The child remained active until the diagnosis and treatment, was cycling, was physically fit and did not complain at all.
“Tumor surgery was not possible because the cancer is very aggressive and it is in the danger zone, which means that there was too much risk of bleeding. As this is the only case in Lithuania, doctors have read a lot of literature on how the disease is progressing and what treatment options are available in the world. Unfortunately, today, the only solution available is special medicaments that do not guarantee but give our child a lot of hope to be healthy and happy, ”said John’s mother.
Currently, medicines recommended for a child are not reimbursed by the sickness funds and the state has not responded to the request to do an exemption. Immediate first aid with medications, which will be enough for the family for half a month was provided by Rimantas Kaukėnas Charitable Foundation. According to foundation staff, OPDIVO 10mg / ml concentrate for infusion solution cost € 2,300 (with the discount which is made for the foundation), two doses of the drug are needed per month, and doctors will only be able to see the effects after three months, later John would have to take these medicine from six months up to several years. The timing of treatment is unpredictable, depending on how well the patient responds to the medication.
“John underwent several treatments – John received chemotherapy at Santara Children’s Hospital, also, combined treatment with other drugs that did not help and the disease progressed. In John’s current situation, we may re-apply chemotherapy, but given that it did not help the child in the first stages of treatment, it would be too risky to repeat courses. There are some classic cases in global practice where our recommended drugs have helped patients like John. The medication gave a positive response. We did very detailed research, collected a lot of information and we believe that today these drugs are the optimal treatment option. Once a patient has taken our recommended medication, there are several studies that later show the effect of the medication. The tests are done 3 months and then 6 months after starting the medication,” – said Domantas Diglys, a doctor, oncologist and chemotherapist who cares for John at Santara Hospital.
A serious illness does not deprive John’s smile
According to his parents, John is mature enough to understand the seriousness of the disease, so the only way he can get away from his terrifying thoughts is additional activity.
“The only thing he wants today is just to be healthy. Although he is very ill, he does not lose optimism. The guy “lives online”, reads and is very interested in engineering and cars. That’s how he tries to distract negative thoughts, “ – said John’s dad.
“The son excels in science – math, physics, chemistry. The kid is full of plans for the future – he wants to start university, thinks about engineering program, ” – added John’s mom.
The mother has no doubts that the child has thought a lot about his illness, he has read a lot of information on the internet, watched his treatment process, talked to the doctors himself: what he should eat, what medications he is allowed, why he has certain side effects
But even in a difficult situation, John manages to look at things calm and laughs: “Mom, Miracle! You have an exceptional child, I’m the only one in Lithuania, which has this disease.”
School community is indifferent to his illness
According to John’s mom, they also received a lot of support from John’s school community. “When the teacher informed the children about John’s illness, the children were confused and did not know how to communicate with him. Then a school psychologist came and helped them, we can say that the psychologist has returned John his friends. Now, just as before the illness, the son can continue to talk, make jokes with friends, often call them or have video chats,” – the child’s mother was happy about the support from John’s friends.
Parents blame themselves – what have we missed?
Back in 2017, when John was healthy, he had an X-ray, and it did not show anything at the time. However, health professionals say this treacherous disease can develop very quickly over the year, which is what happened to John. “You start blaming yourself – you might not have seen something… He did not smoke, he did not drink, he lived a healthy lifestyle. We want to save our son, to pull him out of this nightmare. We want him to live a long and happy life. ”
Parents were moved when one child donated the euro, which was meant to be for his lunch
John’s parents educated the child very rightly and made a big effort that he would be honest and upright.
“At the age of 16 he wanted a new computer, so we encouraged him to earn money for this gift himself. He got a job in the shop, earned some money and bought his dream computer. We raised our son to be a responsible, honest, noble man, to respect everyone in his journey of life. Although we are probably seeing the big hearts of people just now… At a school charity event, which was organised to help John, one kid took out of his pocket the euro his parents gave him for lunch and donated it to help us… There are many wonderful people who want to help,“ – said John’s mom.
Both John’s parents are working, but mum often has to spend time with their son. “My employer gives me all the possibilities to take care of John when I need it – trips to the hospital, a period of treatment. I can get permanent child care, but it would further reduce our family’s income, and John himself is asking to be left alone, he feels grown up and does not want me to always be around him and of course he does not want to see me looking at him as a seriously ill person, ”said his mother.
Today, the family needs the support of all people for medication, which is the only hope for John to recover and feel better. The cost of medicines for the first and most important three months is estimated to be more than 13,000 euros. Later, the amount needed for medication can reach tens of thousands of euros.
INFORMATION ABOUT DONATION
Rimantas Kaukenas Charitable Foundation would like to thank to everyone who contributed to this family, who were not indifferent and made a donation! The donation is currently suspended because right now we have money for John treatment for almost whole year. 59035,71 eur was donated to John for the medicines he needed!
NOTE: Donations will be resumed if needed.