A child's illness has made our family stronger!

How did it all start? 

No matter how much time has passed since then, the pain does not stop. Although our child has been healed, growing, and developing following his peers, my feeling of helplessness and sadness does not stop.

We live in Novi Sad, the second-largest city in Serbia, a small Central European country. It all started before the end of 2017: before that, we were a growing family, with two boys, soon to be four and two years old. 

However, one visit to the doctor turned everything upside down: after that, we spent three weeks in the hospital, one ear operation later, pathohistological findings confirmed the diagnosis: Langerhans cell histiocytosis, and the more serious version - multifocal, since the temporal bones of the head and changes in the liver.

Hospital days...

Treatment of our son

Since then we have become a family that lives at two addresses and has double expenses: the husband stays with the older son, trying to keep the job and supply us with what we lack in the hospital… I stayed in the “golden cage” with our younger child, caring and undergoing treatment through three blocks of chemotherapy, two blood transfusions, one platelet transfusion, raising the immune system, giving protein injections to raise leukocytes and the body was able to cope with the disease and other challenges that treatment and recovery brought. 

During the year and a half, as long as the treatment lasted, we were in the hospital between eight and ten times, due to therapy, recovery from therapy, improvement of blood count, and immune system, so that we could continue with treatment according to the protocol. As for the protocol, although we had great doctors in the Department of Hematology and Oncology, they were powerless, since the protocol for the treatment of this disease was created two years before Viktor's birth in Vienna, Austria. That left us all in the darkness of not knowing how they would react and what the course of treatment was. It depended on the response of his organism to the therapy and our readiness to listen to the doctors, respect the protocol and do our best for the treatment to succeed. This included care, nutrition, daily care, and extreme measures in maintaining hygiene and disinfection of the space in which we live.

We received the first positive response to the therapy and the course of treatment with the results after a year and four months from the beginning, which was a light at the end of the tunnel, a sign that we did everything well and that the disease was erased from his body. After the next check-up, we already had positive signals that our family life would return to the (new) normal, without going and staying in the hospital, cytostatic medicines, and corticosteroids, with care for the rest of our lives, what if the symptoms return?

He is now a cheerful boy of almost six years old, he goes to kindergarten and trains rough motor skills, and for us, this experience was a serious test of the stability of our marriage and a test of the determination that we want to be parents. 

Our little hero 

How my family recovered

Our constant communication was crucial, in both beautiful and ugly moments, that we shared everything with each other and continued communication no matter what. The support of the family was of great importance, as well as the friends who jumped in, regardless of whether we asked them to do so.

Parents of children diagnosed with rare and malignant diseases know best how much the support and solidarity of others mean since they know the situation in which you find yourself and offer help unreservedly. Strange as it may sound, in the moments when our children sleep in their rooms, and at night only infusion pumps are loudly working, the mothers of little heroes suffering from leukemia or various types of tumors were able to find each other, have a small, silent laugh and share their grief with others. The friendships remained for the rest of our lives since we were connected by the worst scenario that a child's parent can hear.

Love has won, no matter what it is called and to whom it is directed. Love for the child, who grew nine months below your heart, love for the husband who sacrificed his job, to come to feed his child in the middle of the day, because he wants "dad to give him lunch". Love for the mother-in-law (since your mother died six years earlier), who never said "it's hard for me, I can't", but always "what do you need, what do you want?" and greeted and sent off, washed vomit and bloody laundry, waited for hours in front of the office to be checked for another pair of hands, to pick up your child while you in the hospital deal with the administration.

Respect and understanding of colleagues at work, when you have not worked for almost two years, and you know that many companions of small patients do not have that luxury. Community support, which is fighting on your behalf to pass a law that will allow you to be on sick leave with your child at all times during treatment, with the payment of 100% leave compensation.

“Thank you!” to those who helped us in the healing process

And last but not least, your debt to humanity and all those who supported you, which becomes a motivation to repay: associations of parents of children with cancer (NURDOR), associations of parents of children with rare diseases (The Rare Diseases Database).

Our lifelong mission remained to give back to the parents of these children at least a little bit of everything they did to us while we were in their situation. In the meantime, the husband wrote the book "Two and a Half Boys" and donated part of the proceeds from the sale to the Department of Hematology and Oncology of the Institute for Public Health of Children and Youth of Vojvodina, where our child was treated.

We have participated in projects of associations such as NURDOR and the Rare Diseases Database, because we know what agony parents go through, how many things are at stake in a situation of malignant or rare disease, and how strong you must be, in your head and heart to fight all demons which overwhelm you during treatment.

I use every opportunity to speak loudly and write about our experience because some do not know it and cannot understand it, since it did not happen to them. I write on this topic on my blog “Complicated girl against the windmills”, I gladly answer questions from journalists or those who want to talk and write about this. Little heroes exist, but they are quiet because they need strength in the fight for their health and recovery.

Family album

We went on with our lives, but…

On my blog, you can find texts from the beginning of treatment, dealing with the diagnosis, what happened in the meantime and how we ended the treatment cycle as a strong family, full of respect and understanding. Our love has grown, and new priorities have been imposed when we make decisions about what and when we will spend time. Some people disappeared from our lives during this process, some stayed in it forever. We have learned what is important to us, to say "No" to toxic relationships and things that do not suit us. No one is worse than that, and life is really better for us.

All we need is love!

No matter how difficult, unsolvable, or tragic something may seem to you now, give yourself time and it will help to clear your thoughts and solve problems. Give yourself time to accept a certain situation, news, or fact and adjust your life to the new situation.

At the beginning of the treatment, it seemed incredible to me that it would last so long, that it would take us over a year to hear the good news. Yes, every day was a new little agony, but we needed strength to get up every morning, follow the treatment protocol, fill the day with hugs, talking, drawing, and playing, and go to bed every night to pick up crumbs from the floor and gather strength for a new day.

You can be that change if you share a little of your time with someone who needs your help. Show them some love and give them the support they need.

Wee Owlet published our story on August 22nd, 2021.