Saturday, July 2, 2011

Rolands

PHOTO DONATION: VALDIS


This story is a collaboration with our supporters “Mans Mazais” magazine.

On our visit to Rolands and his family we were joined by the journalist Dace Rudzīte. We thank the photographer Valdis Jansons for the images taken during a winter’s day in the Mežotne castle gardens.

The article was published in the April issue of “Mans Mazais” magazine and you can also read it online www.mansmazais.lv.

By: Dace Rudzīte (Mans Mazais)

A test we must survive...

Last September 20th Rolands turned four. He spent his birthday at the hospital. The boy has blood cancer, but in spite of everything he has experienced in life and at the hospital he wants to become a doctor. His mom Lilita and dad Ervīns are not complaining about what has happened. Instead they are determined to provide their son with the very best. We meet before yet another visit to the hospital. Rolands doesn’t take part in the conversation instead playing a computer game with his dad. Rolands mom Lilita recalls:

One August morning Rolands woke up complaining about pain in his leg – his hip. He said it was so bad he was unable to climb the stairs and I had to carry him. We called the paramedics and doctors said the boy has a bruise or a strained muscle, – nothing serious. While they examined him Rolands kept quiet but once the medics left he burst into tears admitting the pain was excruciating. I told him he must not keep quiet because mom, dad and doctors always need to know if something hurts. For a few days everything was fine. Then suddenly Rolands got a fever and the pain in the leg was back. We went to the children’s hospital in Riga where doctors began looking for the cause of it. I got a hint when they said a doctor dealing with blood illnesses will come to see Rolands. They performed a puncture, some other tests and confirmed: Rolands has leukemia. I was alone when I got the news, Rolands’ dad was working in Liepāja. I couldn't talk to anyone because I had no idea what that meant. I had heard about leukemia but had no information regarding treatment or anything at all. Yes, leukemia is terrible because its impossible to predict how the illness will proceed. When they told me the diagnosis I thought our active boy will be bed-ridden. How can it be? Is that the end of everything? But it turned out that its not the case. He has so much energy...
Spending time in the unit for children suffering from cancer its difficult to imagine that they are sick - they run around, play hide and seek, drive their toy cars. Positive attitude means and does so much. I don't cry when Rolands is around because I don't want him to see my tears. At first it was difficult - despair, tears, the constant question about what’s next. But such attitude is of no help. Constant crying will end up with me taking antidepressants. How will I be able to help Rolands then? He needs my strength and energy not my suffering.

Tough job
Due to illness we spend very little time at home. Much time is spent on the road between Bauska and the hospital in Riga. Three days at home, four - at the hospital. When we come home we don't even have time to re-pack our bags before we have to head back to the hospital. I don't work so I didn’t have to quit my hob because of the illness. Rolands went to a kindergarten for a while but since I didn't work I decided I wanted to spend more time with my son.

Its tough at the hospital - treatments, chemotherapy, a 24 hour system, the atmosphere there and the regime. Im not used to spending all day among so many people, so I have to constantly learn to adapt. I yearn to relax but I can’t do that even when Rolands stays at the hospital with his dad. It has been five months since the treatment started (our conversation takes place in February – author’s note) and I can feel the physical strength abandoning me. I don't want to go to exotic places or meet people. All I want is to be at home.

«Mom, I won’t cry...»
From the very beginning I tell Rolands what different machines are, what the doctor will do. We talk everything through. Sometimes we cry if we feel like crying because there is no other way for us. Every day for about a month and a half they took blood for analysis from his arm. There were times when a nurse was unable to find a fresh spot for taking the blood. But Rolands didn’t cry. He just clung to me and said: «Mom, I won’t cry. I don’t want you to cry. I love you very much.» I don’t know where he got the strength to not show the pain. Then they inserted a catheter under the skin on his chest. It reaches the blood vessel and now Rolands doesn't even feel a thing when they come to take his blood for testing.
Each day he had to take over a dozen pills. At first Rolands had to take a pill at a time. Later the amount of pills increased so I ground them and mixed with a yoghurt or some drink. That made Rolands sick. When they decreased the dose gases started forming in his tummy and doctors wanted to insert a catheter. I didn’t let them do that for it would decrease the quality of his life even more. I was waking up at six in the morning and bathing Rolands in a warm bath so he would relax and calm down.
The doctors say its good the illness was diagnosed so soon and Rolands is at the age when the leukemia usually responds very well to treatment. The treatment takes six to eight months. During the first month Rolands reached the level when there were no more malignant cells and now he has to go through sustaining chemo. He has to survive five years and then there is a guarantee that the illness wont return.

The hairless doctor?
Initially I noticed I don't recognize Rolands any more. He told me a lot about how he was feeling, what he wanted to do, he complimented me: «Mom, you have such strong arms. Mom, you have such strong legs. You have tender and very lovely fingers.» Everything seemed important to him. There was a time when Rolands felt very sick and spent most of his time sleeping. Then he made me wear only one jumper with rhinestones because he liked it so much. The illness has made Rolands more grown up. Actually all three and four year olds at the hospital speak like grown-ups. For example, they talk of blood tests, ask each other if they’d been feeling sick that day or if the other one had vomited. Nobody makes fun of the others due to baldness caused by chemotherapy.
When we returned home other kids initially made fun of him. I explained the reason and they understood. I talk with Rolands about different things too. When during the first month at the hospital he went bald he studied himself in a mirror and was very worried. I showed him his baby pictures and said: see, when you were a baby you were bold too. The hair will grow back. Rolands calmed down. One evening he was sitting all lost in thoughts. I asked him what was on his mind. He said: «When I grow up I will be a doctor but the kids will laugh at me because I wont have hair.» I was surprised – he has to suffer so much and still he wants to be a doctor. I’ve often caught him thinking of something. If I catch the right moment he shares his thoughts with me although at first he hesitates and wants to keep all to himself.
Chemotherapy and hospital environment take their toll. Rolands has become more anxious. At times I have to think carefully what I tell him. If I don't buy something at a store Rolands can throw a tantrum. Such things never happened before. Sometimes I have to restrain myself because we cant sit there yelling at each other. Its good that now he tells everything thats on his mind because previously Rolands was very discreet and kept everything to himself.

Why us?
Doctors suggested we never ask ourselves why this happened to us because there is no clear answer. Of course, its something every parent asks themselves. Different people have different views but some believe that illness means the child is anxious about something. I don't know. We have always tried to make sure that Rolands feels fine. Of course, there was a time when we worked a lot, especially Rolands’ dad whom he loves immensely. I think its simply a test we must survive. Rolands must survive it, too. The illness will make us and him only stronger. Maybe its the road towards his future profession when Rolands will be the hairless doctor... He will be a brilliant doctor because he will have survived the illness. Just that the process is a scary one.
One of Rolands’ friends died at the hospital. Nobody said anything. Kids thought he had gone home, because they think one gets out of the hospital only when one’s healthy again. Then you sit and remember how they were running around... There was a happy event too – a boy had arrived at the hospital for a check up. Suddenly his parents walk into the ward and say - lets go to the store! But the boy was lost in playing and didn't show much care in going anywhere. Then they asked him: «Do you know why we’re going there? To get a cake because you kicked the illness! You won’t have to come to the hospital again!» When such things happen you sit there crying and feeling happy for them because their story has had a happy ending.

No special treatment
Do we treat Rolands in a special way because of his illness? No, we don't and we don't emphasize that he is ill. Once Rolands had a very low level of thrombocytes and doctor said he must be very careful in order not to hurt himself for there is a risk of internal bleeding. That means he must stay home doing nothing. But we don't take any extra safety measures – Rolands goes to the country with his dad and they go skating. Yes, he can fall down but he has a helmet, guards and upholstered pants. Come summer he will go riding a bicycle. Yes, there is a risk but we cant take away our son’s childhood. He enjoys skating, playing hockey – the positive things drag out the illness. At the hospital Rolands is attached to a system and doesn't want to eat or do anything else. Its very different at home – he goes outside, runs around, does sports, he has energy and appetite. During autumn Rolands and his grandfather were feeding rabbits, planting garlic and each day he drank a liter of milk. I think his system wanted to rid itself of all the poison. Rolands needed it.
We must be strong and not think of reasons why. We must go on and live each day by giving something to our son - be it building a snowman, going skating, feeding ducks or making something together in the kitchen. Each day must be full of joy. We cant just sit around because you never know how the illness will progress. We must do things while its possible. Many people don't have a possibility to go outside for a snow fight while Rolands does, so I think to myself - go, have a blast, climb that tree! I will catch you!

Although Roland’s parents emphasize that they are not requesting help and that there are children who need it more we still want to support this strong family.
We can help Rolands get well!

• Rolands loves music therapy sessions (the discounted cost of one session at the Health center 4’s Children’s health centre is 12 LVL)
• Rolands regularly needs medicine. Costs are partly covered by the state leaving the rest to be paid by his parents

Let’s help!

WE STILL NEED: 00 LVL (out of 500,00 LVL – 30.01.2012*):

* Every evening we will update the list of donors and the amount of donations received
* We will definitely create a photo story to provide information about how the money was spent

A BIG THANK YOU GOES OUT TO ROLANDS’ ANGELS:
Our photographers

KRISTĪNE BALODE - 20, - LVL ( 08.04.11.)
ANONYMOUS DONATION - 30, - LVL (11.04.11.)
ELĪNA KĀRKLIŅA - 50, - LVL (14.04.11.)
AIGARS ROZENTĀLS - 10,- LVL (02.05.11.)
LAURA LISOVSKA - 10,- LVL (02.05.11.)
ILVA UTĀNE - 50,- LVL (23.05.11.)
Anonymous - 30,- LVL (27.12.11.)
Jevgēnijs Durnovs - 50,- LVL (05.01.12.)
Anonymous - 250,- LVL (30.01.12.)
Andreas Kiep - LVL 200,- (17.12.12.)


07.04.11. We bought medicine for Rolandam that cost 7,67 LVL. Big thanks to Ilmas aptieka for the special prices!

11.04.11. Letter from mom: today is Rolands’ surgery day. They will insert a central catheter because port catheter is not an option. It has something like a clot at the tip of it by the heart. Today doctors decided on inserting the central catheter because his hands are turning blue and veins cannot be found which drives nurses to despair. On Friday the level of leucocytes was as low as 290. On Saturday it reached 500. Today I don't know but we haven't reached a thousand yet. He has a soar throat and fits of cough. We walk around wearing masks. Me and dad will take turns. I need a breather and a moment alone to think.

14.04.11. We bought medicine and groceries. The total cost was 42,52 LVL. Thanks to Ilmas aptieka for the special prices!

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