Monday, June 7, 2010

Endijs

PHOTODONATION: Ieva Andersone


This story is in cooperation with the magazine Mans Mazais (trans My Little One), a publication that has given www.palidzesim.lv enormous support.

Journalist Dace Rudzitis and photographer Ieva Andersons accompanied us on our visit to a family whose son is sick: He has leukaemia, but has a good prognosis for recovery.

You can read their story in the May issue of the magazine Mans Mazais, and also on the internet.

Author: Dace Rudzitis (Mans Mazais)

This is a story about a once prosperous family who are in crisis. Sigita and Ardis Burkovskis have a child who is ill with leukaemia.

They have three sons: Artis (19), Krists (8) and Endijs (6). We visited the family together with Ilze Skuja the founder of www.palidzesim.lv. We did not meet the eldest, Artis, as he was at work. Eight year old Krists is quick-witted and sociable – he describes himself as a mathematician. He went straight into first grade at school when he was five; in Latvia children usually start primary school when they are six years old. Endijs is shy and hides from us, covering his face with his hands. He has leukaemia and has a good prognosis for recovery, but his parents don’t have the money for their son’s treatment.

This family and their crisis

The Burkovskis’ are a typical modern family who have not avoided crisis. They used to live well without financial problems – they bought a car, and a house to renovate. But then Endijs fell ill and Ardis lost his job; the family has to survive on Endijs’s sickness benefit and Sigita’s monthly wage of 90 Lats. She works at the Vecsaules municipality social centre: Ardis is unemployed and gladly does any work that is on offer but this is not a regular income. The situation would be a little funny if not so serious – the family has a house, land and a car but has no money to buy their son medicine. Medicine is essential not only for Endijs but also for Krists who has asthma. The government does pay for some of the medication but the family have to fund the rest, and presently they have almost no money to do this. The boys don’t participate in any activities outside of home and school as they can’t afford tickets to the theatre or zoo: the Bauska social welfare agency now sponsors Krists’s participation at a childrens’ art group. The Burkovskis family don’t accept defeat – they are prepared to make changes. They moved from their Ozolaine apartment to Sigita’s parent’s farm and they now have a pig, cow and hares: Ardis is also thinking about farming sheep. He is contemplating working in Ireland or another country, but realises that it would be best for the family to stay together. He says “Maybe the GFC (Global Financial Crisis) will open societies’ eyes a little. My time has always belonged to others and now maybe it will be different; I can work for myself and earn money for my family. Somehow we will make ends meet.”

Three sons

Sigita and Ardis married in 1990 and their first son Artis was born; a healthy child who has only been ill a few times. Time passed and they wished for a girl. Sigita fell pregnant again when she was 30 years old and after a perfect labour their son Krists was born. Everything was wonderful and two years later they were expecting their third child – maybe a girl? Their third son, Endijs, was born in January 2004. He was oxygen deprived at birth, and was transferred to the Children’s clinical university hospital where he stayed for a month. Sigita joined him after being discharged from the maternity hospital. During his first year of life he was sick with pneumonia three times. Every two months Sigita and Ardis visited the hospital with either of their younger sons but, slowly, the health of their boys seemed to improve.

In 2007 Ardis had a well paid job in Riga and Sigita worked in a local shop, they also helped Sigita’s parents with their farm. The family did not have any financial problems and it seemed that life was improving - they bought a car and a house. When Sigita’s father passed away she left her job at the store and took on the responsibility of her parents’ well maintained farm and their livestock.

Diagnosis - Leukaemia

Everything fell to pieces in October 2007. Endijs became unwell. It seemed that he had laryngitis, and then he developed stomatitis. The stomatitis spread quickly – ulcers and bruises appeared. Blood tests were taken immediately and an ambulance took Endijs to hospital. The doctors told Sigita that Endijs had Leukaemia, cancer of the white blood cells. In Latvia approximately 5000 people have this disease. Sigita said ”I can’t remember anything that the Doctors told me – only that my child could be cured. I reassessed my entire life during the seven months that Endijs spent in hospital undergoing chemotherapy.”

During this time the family stopped helping with the maintenance of Sigita’s parent’s farm and the livestock. Ardis and the older sons were at home worrying while Endijs and Sigita were in hospital in Riga. Krists was also often sick and was often in the Bauska hospital with his father. During that year their eldest son, Artis, was finishing grade 9 and had to prepare for exams. (In Latvia grade 9 is the final year of primary school.) Sigita and Ardis now admit that those six months were terrible. Ardis tries to see some positives in the situation “That was a time when I could be together with my family. I was very lucky that my managers allowed me to be with my son in hospital – this would not be possible for many people. As their father it is important to me that I experienced and understood what happened to us.”

Parents support each other

During their hospital stay – and even now – Sigita and Ardis receive enormous support from mothers whose children also suffer with leukaemia. Sigita remembers how she experienced all possible emotions immediately after discovering his diagnosis. “Everything collided; the word “cancer” was relentlessly hammering in my head. At that moment I was angry with God, with myself – I was looking for someone to blame. There is no one to blame. It is how it is. I was lucky to be in Ward 12 with a mother and her daughter. She was the nicest person you could possibly imagine: she calmed me, helped me and showed me everything. I could cry on her shoulder. I was very lucky to meet the right person, in the right place, at the right time.” Now Sigita has a support group of more mothers from Liepaja, Bauska, Grobina and Rezekne. They all meet in Riga or go to Rezekne to talk and to be there for each other. They also meet in sorrow, when a child passes away. Sigita reveals “Sometimes, a bone marrow transplant is needed if a child’s leukaemia does not respond to other treatment. If there is still no improvement, then we really get scared.”

Endijs became introverted during the seven months that he spent with his mother in hospital; he did not say a word to his doctors. He sat cross-legged on his bed, and drew or painted. He was a little warrior – arming himself with pistols or swords. Even now in the shops Endijs chooses toy pistols or swords over other playthings.

Unconditional Love

When a child falls seriously ill it is impossible for the parents not to think “Why has this happened to us?” Ardis says “Parents blame themselves. Maybe I still want to place the blame – why us?” Sigita also does not have an answer – she focuses on their doctor’s words “You are well situated, you are good people and you will love your child despite everything. Other children have not been so fortunate with their parents, and they have to fight this on their own – it is better that these children do not fall ill.” Sigita muses “Maybe this was meant to be”. She remembers how her different her life was before Endijs fell ill. “Before this I thought that I could do anything – and that everything came easily. I wanted something – and I got it! And then out of nowhere – a rude awakening. I was probably going in the wrong direction. Nobody is invincible.” She is now able to admit that “this lesson has been a blessing”.

Endijs’ Special Life

Endijs is not allowed to drink milk or use milk products before taking his medicine; he can’t play together with the boys because he bruises easily. He can’t be in the sun, and can only have limited physical activity as he tires easily. His parents say that Endijs mood changes often, he is at times nervous, aggressive or depressed. His medication has changed his sense of smell and taste. When in a store he likes to spend a lot of time near aromatic items as his sense of smell is heightened. He reacts to food very differently: he spits out what others find delicious – finding it salty or sour. His tastes vary daily: he rejects foods that he has eaten with relish the previous day. They have to entice him to eat most foods, but often prepare soups which he almost always likes.

Endijs turned six in January and he now attends the preparatory class at primary school. The school psychologist believes that he did not develop intellectually during those seven months in hospital, explaining that it was as if he were isolated from the rest of the world and this is why he is not interested in studying at the moment. Endijs knows his alphabet and numbers – and he will eventually catch up with his peers. His parents still can’t decide if they should let him start year one or wait another year. How does Endijs cope in the preparatory class when his parents aren’t there? He does not interact with the active children – he has however made a new friend, a girl. He understands how far he can push himself and what he can achieve; he does not run around or cause mischief. His parents believe “Endijs knows that he is special, and that he has a special life. His whole family is concentrating on him and his needs, and our son’s personality has been influenced by this”. Ardis says “Endijs loves imaginative play. He puts my winter gloves on his feet and transforms into a penguin, or wears his mother’s boots with buckles and becomes a pirate or a rabbit.”

Daily Medicine

Endijs’ disease is in remission, the attack on his blood cells has stopped. The doctors have said that his leukaemia is responding well to treatment, and recovery should take approximately three years. The finish line is already in sight as his third year of healing starts in October. “God willing nothing bad should happen” says Sigita. Endijs is undergoing ongoing preventative therapy – he has to take one drug daily, others – once a week. He also has to take medicine for his liver which suffers from the use of the other strong drugs. The family travels to Riga once a week where he undergoes tests.

After the three year recovery period Endijs will be monitored for a further five years to ensure that the disease is in remission. He and his family can never ignore that he has had Leukaemia. They will have to be vigilant because it will always be close by. But they also can’t live waiting for something to happen again. They have to make the most of life – and Endijs has to conscientiously take his medicine. Every day.

We can help!

Endijs needs medicines every month.

The boys would be very happy to visit the zoo, a theatre or the waterpark.

Again, heartfelt thanks go to the “Mans Mazais” team.

Call 90006888 and donate 1 LVL

A huge thank you to Endijs' angels:
Marija Rudakova - LVL 15,- (17.05.10.)
Aleksandrs Sļadzs - LVL 15,- (17.05.10.)
Kristīne Beinaroviča - LVL 20,- (19.05.10.) - to get well and win!
Anonymous donation - LVL 50,- (19.05.10.)
Vita Kalniņa-Kalnarāja - LVL 20,- (27.05.10.)
Aigars Rozentāls - LVL 10,- (31.05.10.)
Raphael Vogrig, Lux&Scan Technologies - EUR 1000 - LVL 703.10 ( 28.07.10.) for monthly purchase of medicinal products

28.07.10
Endijs has been in 2 camps this summer- in our organized camp in Bauska and in the camp in Tērvete, organized by Latvijas Bērnu fonds (The children Foundation of Latvia). His mum is very glad to tell us that Endijs has changed a lot and has “grown” during this summer. He has become more brave and self-dependent. We say our most sincere thanks to all contributors about the possibility for Endijs to enjoy the summer in the camps, also for the possibility to buy the medicine.

A special thanks to Raphael and his company who transferred the amount of money needed for monthly purchase of medicinal products.

Krists, Endijs’ brother, had an active rest for a whole week in the camp "Spēkaruksis" (“the power grunter”) . Thanks to the "Spēkaruksis" about the possibility for Endijs and 12 other our children to take part- as they say themselves- in the most fantastic event of the summer!

The family of Endijs also watched the cartoon movie “Shrek 3” in the beginning of June, the tickets we kindly granted by Cinemon.

The kindest thanks to you all!

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