The story of Vaclav, my 10 year old son, begins in March 2017 in Zhytomyr, Ukraine where we lived. At the beginning of summer 2017, bruises occurred on Václav’s skin and gradually he became more and more fatigued. The illness started with excessive bruising and extreme fatigue. From what blood analysis revealed, it was clear that something was wrong and still, for a long time, nobody could give us a satisfactory diagnosis. Despite the disease, Václav still seemed very happy and you could not tell there is something wrong with him. In July one of the best haematologists in Lvov was recommended to us and we went to see him. At the time we did have a clue that a few-day trip to Lvov would mean an immediate and permanent moving to the Czech Republic. Upon arrival to Lvov, the doctor told us his very probable diagnosis - aplastic anaemia. He recommended immediate blood transfusion and transport to Prague, as in Ukraine the state wouldn’t help him with his medical condition. Due to the transfusion, we would have to repeat a 500 km long trip back to our city and I did not want to waste any time. And so I decided to go to Prague. My decision paid off, the doctors confirmed that a delay of several days could be fatal. At evening we left Lvov and went on a long journey to Prague. I am very grateful to the company I worked for. They provided us with a car, driver, travel means and fast border crossing. I travelled to the Czech Republic quite often from Ukraine, but this was the worst trip ever. We didn’t take any breaks as we could not delay. Václav seemed to be waiting for us to begin the journey. Once we left the city, his medical condition began to worsen very quickly. We arrived at the Motol clinic in Prague at the last moment. In the hospital, they confirmed it really was a very severe aplastic anaemia. Son’s blood analysis kept telling us it was really critical (haemoglobin 32, platelets 5, ANC 150), yet he was able to walk through the huge hospital on his own feet until we found the right department.
Fortunately, Václav also has Czech citizenship and the Czech health system is exceptional - practically all the costs of the treatment were covered by state public insurance. I have to express my gratitude to the system and to all Czech people who made it all possible.
At first, I did not have a clue about what was waiting for us and what was going to happen next. The son immediately received blood and blood platelet transfusions. Trepanobiopsia eventually confirmed the diagnosis. The blood of both sisters of Václav’s was immediately transferred from Ukraine by a line bus, but the HLA did not confirm compliance. That's why doctors decided on immunosuppressive therapy. A great day came on August 8th, 2017, Václav received several days of hATG therapy, which he went through like a hero. In addition, he received many other medications for a secondary therapy treatment. It was very difficult to bring the son to a positive mood. After the trip to Lvov, he woke up in Prague, out of his environment, without his mom, sisters and friends. I gradually realized that we can forget to stay and work in Ukraine. There was a nurse who summarized it with her words very well. When I asked her where to buy a ticket to the subway for a month, she said: “buy the year one...”
The time spent at the hospital was hard for me and for Václav as well, but after a while, we got used to the new environment and son started cooperating with the hospital staff. In the end, he received a praise even from the strictest nurse! In a month and a half spent in the hospital I have gained 15 kilos, mainly due to the absence of movement and presence of good food... (Update: I’ve lost 8 kilos already) If you are used to freedom, workload and travelling, then department of onco-haematology is not the right place for you to be at. But you eventually get used to it. I’ve got to say, the staff in the hospital was very nice to us.
I called my wife and told her to sell or get rid of everything and that she and her two daughters are leaving Ukraine in a week and that our family is going to live in the Czech Republic from now on. It had to be difficult for my wife, but she dealt with it really well.
A temporary shelter was provided to us by our family, for which we are thankful to our grandmother. At the end of August, our doctor told us that we could go home, and they would provide us with home care. However, there was a condition. We had to live in Prague near the clinic. I managed to find a flat and on the 1st of September, we could finally be all together again. It was an extraordinary feeling.
Václav's response to immunosuppressive therapy proved positive. In November 2017, trepanobiopsia showed bone marrow cell count at 75 percent, which is basically the norm for a healthy child at this age. The production of cells was still very low, but the son was already independent of transfusion. Partial remission has been reported and at the moment he is still in the same condition. In the summer of 2018, Václav finally freed himself from injections of Neupogen (a growth factor for white blood cells) and now only takes cyclosporin. In January 2019, we should start lowering the dose of cyclosporin, and we hope that present blood values will not fall and hopefully will get even better in 2019.
Cyclosporin has its side effects, in our case, it is mainly weight. A ten-year-old boy should not weight 58 kilograms. However, Václav has a great motivation to lose weight. Despite the physical activity and a brilliant diet, the weight does not fall.
This is the story of our family. It has taught us very much and has strengthened us. We like to believe that it has some deeper meaning. We're working hard on ourselves. Now we want to move from Prague to the region of the Czech spa town of Karlovy Vary, surrounded by forests and opportunities for intense walks in the countryside. The main goal is the convalescence of Václav, he loves nature and this environment is just great for him.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Vaclav Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Vaclav's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
