This week is special for us and for children affected by cancer. On 15 February, we celebrate the International Day for Children with Cancer.
A few years ago, we interviewed children who had crossed the age of 18 and who had suffered from oncological disease as a child. Last year, on this day, we asked parents how they felt when they heard they had cancer. This year, we asked: What do you associate with your child's cancer, what images does it conjure up? Perhaps you have created some encouraging stories as you have travelled the path of illness?
We embrace everyone who has shared their thoughts and given hope to those who have just entered or are about to enter the path of childhood illness. We believe that each reader will find the thoughts close to his or her heart.
Eglė, Liepos mama
We live in a dually shaped world. There is "light" and "dark", "cold" and "hot", "hard" and "easy", etc. Reading today's question, similar thoughts arise. All associations that have ever been invented or formed have phases - BEFORE and AFTER.
Understanding paediatric oncology before Lucia's diagnosis was like talking about the moon. I see it every day. Sometimes through the clouds, sometimes through the fog, and sometimes so vividly and in such detail that it is as if I had hung it in the sky myself. But it's there and we are here. He is somewhere far away. And only when I open my head to the sky do I notice it and give it some kind of meaning.
Also on paediatric oncology. Always near, always alive, real, tangible, but somewhere far away until you pay attention to it. Until it touches and involves. And now, after thinking things through, I realise that before the diagnosis of Liepa Lucija, childhood cancer was associated with fear, uncertainty, darkness, coldness. Realistically, everything that repels, distracts, isolates. It was these processes, and life in general, regardless of the context, that gave me a tremendous sense of fear.
Hearing the phrase "Your child has cancer" is shocking. But when I detach myself from the emotion, I realise that it is, in fact, nothing more than a confrontation. A confrontation with the greatest fears ever imagined and created in my mind. And in that moment, I see two ways out - either I deal with the fears or they deal with me.
This is where the incredible begins.
Liepos diagnosis in July opened my heart to crazy love, my mind to calm thoughts, and my eyes to see wider, deeper and more attentively. It has taught me to accept, not to judge, to know, not to identify and to let go. It has taught us compassion. It has awakened a tremendous desire to help, to spread awareness. This diagnosis has not only revealed the power of faith and hope, it has also shown how much unity, consistent work and dedication can do.
Having a child with cancer is like a gift to me. A flight into space. An expanding life experience. Every day I want to be a real human being. Every day, I feel a stronger force to act. And above all, to live and to enjoy. To take responsibility for one's thoughts, words and actions. To share the warmth of the heart and to create.
This is not the end of life. Nor would I call it a tragedy. It's a new circumstance in life. A new colour in everyday life. It is up to me to decide what shade it will be.
What we cannot change does not make us powerless and worthless. They are simply things we cannot change. I wish everyone would accept this and change what can be changed.
Life is beautiful. Hugs.
Victoria, David's mother
For me personally, a child's oncology is a cassette of many feelings: at the beginning, the body is shackled with panic, and then there is peace, hope, prayer, boundless gratitude, friendliness, fellowship, purification...
Hope and boundless faith carry us forward, day by day, with the infinite belief that tomorrow will be better. We have already seen our better tomorrow, and for the rest of our lives, we will remain in our hearts with the greatest gratitude for that better tomorrow...
Today, my vision of my child's oncology is painted in only the brightest colours. With this terrible diagnosis comes many good and bright things - help, friendship, the true joys of life.
Rūta, Liepos mother
In retrospect, we associate a child's oncological disease with great stress, constant anxiety during the treatment path, and fear of the possible loss of a child. In addition to the great psychological and emotional experience, there are many other unpleasant associations: the child's experience of physical pain during procedures, operations and medical treatment, his tears, the long hospital stay, the family's financial worries, the strained relationships with each other because of the current situation, etc. Over time, these associations about the child's oncological illness change.
In general terms and in a nutshell, it is a very big challenge for the whole family and relatives.
Of course, there are beautiful things that happen along the path of a child's illness - you get to know many people who support the family, you get to know other families going through the same experience, other families who have already been through it, and you get to share your knowledge and support with others. The most rewarding were the success stories of children's treatment. Our straw of hope was the story of Vikutė's recovery, and all the support and help for our family was getting to know the team of the Rugutė Charity and Support Foundation.
I hope that the success story of Liepa's illness will be a beacon of hope for other families on their challenging path.
Edita, Jauniaus mother
Jauniaus oncological disease, after 6 years of living with her and next to her... It is and was a process, when Youngster developed primary leukemia, it was totally unexpected and unbelievable, because it seemed that until then he was the healthiest child in the yard. It was October, and it seemed that all that cold was just pounding into our lives, because it's no secret that it changes a lot. Later, with the first, second, third and fourth relapses, I learnt to respect the disease as if it were an element. I realised that it is intelligent and we are only trying to race against it. I learned not to ask why and not to blame. Just to survive. Even when it seems to be stronger, to say "I know I don't know anything". And keep going. That's why for me it's a journey through the mountains, the seas or the deserts, whichever you like. A journey that fundamentally changes you as a human being without much choice.
Jolita, Gaudre's mother
For us, a child's cancer is first and foremost a kind of journey, which can be symbolically divided into sections. The very beginning of the disease could be described as fright, immense anxiety, confusion and uncertainty, followed by reconciliation, focusing on the treatment process, where the efforts of doctors and the little fighters, but also the support of relatives and friends, and finally the return to everyday life are of particular importance. It is probably at the last stage, when the situation has calmed down, that we realise that the disease, despite all the incomprehensibly difficult negative experiences, has given our family countless beautiful, motivating and encouraging acquaintances, who have extended the hand of friendship at the most difficult times, and who have developed the strength never to lose faith and to celebrate life every day, without waiting for a better tomorrow, a better future. Just to be here and now with your whole being! The diagnosis of cancer is always and for everyone a shock, a kind of test. Being on this path has made me realise that even a disease like cancer is treatable, and in many cases, curable!
Beata, Nikita's mother
Our son has cancer. The diagnosis is acute lymphoblastic leukaemia. Comprehensive blood tests and the diagnosis we heard from the doctors a couple of years ago changed our family's life. The beginning was very difficult, it seemed like the end of the world! But as time went on, we realised that we couldn't let go, we had to be stronger than ever! The most important thing is faith, hope and love. I always told my son - "Son, you are strong, we are with you, you are not alone. As many good emotions as possible, hold on with all your heart, surround yourself with love and warmth. All that is needed on the path of illness is just being together and believing! Don't think about the worst. After all, we parents, with our infinite love and devotion, our presence and our inspiration, can overcome all life's challenges! Children are God's GIFT, and once we have received them, we are obliged to love, respect and protect them unconditionally!
Lina, Oton's mother
I keep thinking what to write... That my associations are not what they should be. First of all - death. Then the bare heads of children. When Otonas, a 5-year-old boy, used to say he was afraid of dying, I used to tell him that he would not die. And if... it is very beautiful in heaven and Jesus is waiting there. The same Jesus who accompanied him to all his operations and who still walks with him, holding his hand. When the children ask him about the scar on his chest when he is getting dressed, I have taught him to say that he does not want to talk about it. Or I have told him to make a joke, to make up some heroic story about defeating a dragon or a dragon. I wrote what was on my mind right now. If something nice comes back... but what was nice about the illness. All of you who have supported, cared. We were braver with you. Thank you
Dovilė, David's mother
As a mother, the onset of my son's cancer reminded me of a high-speed train on which life or fate put our family against our will. At first, the train was moving at high speed, then it slowed down and the stops started to repeat. We got used to the sights: hospital wards, corridors, hospital faces, medicines, procedures. And step by step, day by day, we are now leaving intensive care behind, moving towards supportive care. Our journey is expected to last until May 2025. We hope that the rest of the journey will be smooth and according to the doctors' plans. We wish all the children who have heard the diagnosis of cancer strength, positive emotions, positive news and the most favourable test results.
Mamoms ir tėčiams linkime nebijoti, klausyti gydytojų nurodymų ir klausyti savo širdžių.
Ernestas, Emil's dad
Hi, it's hard to say something, but that first feeling when you find out is initially crushing for all parents because of the uncertainty and fear for their child. The world seems to stop and there is nothing else around but that terrible diagnosis. But the time comes and you get a lot of support and help, not only from relatives but also from strangers who give you hope and strength not to give up, and when the parents seem strong, then the children become invincible. That is probably my inner feeling.
Dovilė, Tajaus mother
First of all, from the very beginning, I associated the child's illness as a great terror (a monster, so to speak). The first images that came to mind were not very good, because our family has no history of the disease, and none of our close family members have had cancer. So it all seemed like a nightmare, but in time we came to terms with it. We think only positively, that the disease is just a period of time to be lived and waited for. Everything will be fine, we will get better and we will live our lives.
Diana, mother of Liepa
At the beginning of our child's illness, it seems like we were living in a bad dream from which we really want to wake up. Then you try to cope with the illness, because you know that the bad dream will end anyway and you can live LIFE again.
Modesta, mother of Fausto
I didn't have any thoughts, and the images are not the best... everything is associated with pain, the unknown, the temporary, because you never know how things can change.
Raminta, Adam's mother
When you're young, it feels like everything is still ahead of you and you have plenty of time to make all your plans and dreams come true. Plenty of time to spend with your family and growing children. But when faced with a child's oncological disease, you realise the painful reality - time is the only thing we have left. No one can promise that there will be a tomorrow, no matter how old you are. The fragility of life becomes apparent and there is a great sense of hope and gratitude for every day spent together. And despite all the fears, the feelings of helplessness, the tears and the difficult moments that all those going through the difficult path of cancer treatment have to go through, this disease, more than anything else, teaches us to enjoy life and to live for the day, to distinguish what is really important in life. It is also along the way that you meet friends who become the only people who really understand how you feel, sometimes without even needing words. And all these are great gifts of life, but unfortunately they come with difficult challenges.
Loreta, Pauliaus mother
It is painfully sweet to write this message. It is lovely that you still remember us, lovely that illness has given us such people. It hurts. I wish it had never been in our lives...Warmest wishes to everyone in the chapter. I don't feel like going to Vilnius yet, I don't feel like going to Vilnius at all, I'm getting tense just going that way. Now we are continuing our treatment in Klaipėda. But I know, I hope... one day we will go to Vilnius with a light heart, we will go up to the third floor of Santariškės 4 without fear and without a stone on our chest.
A success story... Maybe it's too bold to describe our journey as a success story, but only from the outside looking in. Paul and I have reached the point where we can call our story a success story. Yes, lymphoblastic lymphoma is not a success story. But our journey through it is a success. We went through the treatment, as the doctors said, like clockwork. There was no need to stop, there were no critical pits. Just as Paul says: LIKE ALL ONKOVAKS, his hair fell out, his weight dropped tragically and did not come back for a long time, the drugs took the strength out of his legs, his whole body, his intestines, stomach and mouth ulcerated. We are in remission. We have grown beautiful, dark hair, the weight has come back, we have gotten bigger and thicker. The smile, the dreams, the aspirations, the expectations are back. We grew up. We are now 18. We are continuing treatment with adult doctors. The treatment is going smoothly, steadily. Yes, there are times when a nasty joke is made: ulcer in the mouth, stomach ache, etc., but out of the planned 16 months of treatment, we have 4 months with a tail. I remember in the very first week of my admission to hospital, a doctor said that oncology is no longer a sentence, thank God. It is a disease that requires a lot of strength, endurance and patience, but it is a conquerable disease.
We are eternally grateful to our doctors Igne and Indre, all the doctors in the ward, the other doctors in Santara, the nurses, the matron, the physiotherapist, the occupational therapist, the housekeepers, the cleaners, the entire ward staff, the children and the parents we have met, and the people who have helped to keep us on the ground
You know, like bereavement, this disease has its stages. It takes a lot away, it doesn't give everything back. There was a stage of denial, there was mourning, there was struggle, now we are grateful. I thank God for the lesson and the opportunity.
Best of luck to all.
EVERYTHING IS AND WILL BE FINE.
Indre, Adomo mother
From the very first day I heard this terrible diagnosis, I found strength in my faith. The first night in hospital, I had a dream that I had to read the Bible. I didn't have one and there was nowhere to buy one, so I downloaded an electronic version on my phone. I read continuously, non-stop. God was my strongest protector, comforter, strengthener, intercessor and best friend. It was only thanks to my strong faith, communication with God and constant prayers that I was able to persevere and endure the whole treatment. The Holy Scriptures were then a substitute for sedatives. I realised that without God and faith, I would not have come this far alone. It is truly unbearable. So, a major turning point happened in my life and in the life of my family. The conversion was like a new birth.
I always find strength in God. Only now am I beginning to realise that at that time God really heard me, sent me all kinds of signs, and tried to show me in every way to make me believe that there are no impossible things with God. Thus, suffering can serve for our edification and Christian growth. Illness is also part of "all things that work together for good for those who love God". Therefore, do not be offended by it. Let not your bitterness be forgotten. I am always, always thanking God for everything. In this way, I have seen my prayers fulfilled every day and the peace I asked for come. Only that faith must be so strong, so unquestioning, so firm and sure, that I even imagined that I was standing like a skyscraper, grounded in faith, and that nothing could knock me off my feet, nothing could move me or tear me down. I wish all families to hold God's hand, to hold on to it tightly, to pray for wisdom to the doctors and nurses to help the child to a full recovery and to give thanks for everything. Alleluia! God bless you all and may the light of the Universe cover you! Amen I can confess that life with God is so much brighter, so much more meaningful and so much more beautiful when you accept Jesus into your heart.
Aurelija, Joris' mother
A child's oncological disease is first and foremost associated with pain, for which there is no explanation and it is difficult to find meaning. At the same time, it brings a lot of contrast and colour to life - to appreciate more the day that comes and goes, to enjoy being together and to create beautiful moments.
Dovilė, Auksė's mother
The past 7 years of my daughter Auksė's and my life have allowed me to understand and reinforce the idea that whatever life gives us, good or bad, joy or pain, we have to live through it.
Toma, Emilia's mother
Anyone who has had to deal with this disease knows how many emotions are stirred up just by thinking about it, by seeing it! After all, no one stays in these wards for nothing. You don't know what for, or why... It's just in your mind that you try to work out how it's all going to work out. You always have to think that everything will be okay and it can't be otherwise. We will make it!