There is no time left ... We keep trying to rip Tymek out of death's hands, but the fight is uneven. Resected malignant tumors grow back again and again. Our son had already nine brain surgeries, each deadly dangerous. And that's just the beginning, the war is still ongoing... We thought we won, we thought that cancer was finally gone. But then genetic test results shown that Tymek has a mutation in the gene tp 53. That means that cancer will never give up. On Thursday, November 23rd he again went through a brain surgery - doctors again saved his life by cutting two tumors. We know that we do not have much time now - we know tumors will grow again. We have the last chance to escape death - treatment in Nationwide Children's Hospital in the USA. We have to be there in two weeks. We beg, help us save Tymek!
Extremely malignant cancer Choroid Plexus Carcinoma (CPC) is our enemy, it wants to take our son away. Until July 2017 we thought it was over, we thought that we won the battle... But a month ago we came back to the hospital due to problems with ventriculoperitoneal (VP) shunt. The doctors focused on the infection and the biggest nightmare was about to come. Physicians did a standard MRI... We did not expect bad news, we were not ready for another shock. Just one look at the doctor and we already knew - cancer came back. For the second time already. Two tumors in the brain that had to be removed as soon as possible. Again fear and hours spent at the operating room door and the words "please prepare for the worst". Surgery was successful, guardian angel watched over our baby. But we know for sure that cancer will not let Tymek go.
In Poland, the treatment offered does not consider Tymek's mutation. He will not be cured here, because the chemo will not work, and any further relapse may turn out to be deadly. The only chance to beat the cancer is in the US. We need to come to the clinic as soon as possible to start a long-term treatment - if we do not make it on time, it will be too late ...
Our horror began in May, three years ago. We were happy, ordinary 4-person family. A few weeks earlier, 2,5-year-old Tymek and his older brother Filip went through a chickenpox. From that moment on, Tymek suffered sporadic morning vomiting and cold, which we could not cure for a long time. One day, Tymek woke up moody, vomited and instead of dressing up, lay down to bed saying that he was tired. We thought it was just the beginning of severe infection. During the day, however, he felt better. But in the evening he became moody, and "absent". We took a quick decision - we went to the hospital.
We were fortunate enough to hit the doctor, who did not undervalue the symptoms. She kept eye on Tymek and requested detailed examination. Exactly the day after that our horror began. May 29, 2014 - One of the worst days in our lives. It turned out that in our son's head there is a tenis ball-sized tumor! Shock, disbelief, and finally despair - we knew we just have heard the verdict. The next days brought worse news: the tumor was widespread, causing pressure on the brain parts responsible for most important functions of the body, causing vomiting and behavioral changes. This bomb could go off at any moment, taking away meaning of our lives!
We were urgently transported to the Children’s Memorial Health Institute iin Warsaw. When traveling in an ambulance with the siren we had only one prayer in our heads: God, save our child... Operation lasted 7 hours and although the doctors were very careful, they failed to remove the entire tumor. After 3 months of chemotherapy, Tymek again hit the operating table. They managed to cut the tumor. Afterwards again chemo and radiotherapy. This time was extremely hard, it is difficult to describe it in words. Emotional fear, life in stress, because death become our inseparable companion... After many months of struggling at the end we thought we were able to escape, that we won! But there were only 1.5 years of happy, though fearful life, given to us.
In August 2016 we went through another regular control MRI-scanning. Somewhere under the skin there was a fear, but we were not ready to hear the worst news - tumor grows again. Once again, despite of our great despair, we stood up to fight for our child's life! For the third time they opened Tymek's head to cut the tumor. After that, they implanted port for cytostatics administration. They did also another surgery - introduction of drainage for draining excess of brain fluid (accumulated in Tymek's head and prevented the wound from healing). All this did not help. The doctors ultimately decided to implant a VP-shunt. After that Tymek went throgth long months of devastating chemoteraphy. We saw fear in his eyes when he asked "Mommy, will I go to heaven?"
In July 2017 we heard words we have dreamed about: You won, cancer has gone! The tears of happiness danced in our eyes because we wanted so much to believe that it was really the end ... Joy again came into our life. The more so, that a little sister of Tymek and Filip - Zosia - was born. Unfortunately the happines did not last long ... 6 days after the baby girl's birth, the study showed that the death came again for our son. The tumor once again has grown, the cancer returned with a new force.
Now we know that the cause of Tymek's disease is the damaged gene tp 53 - so called Li-Fraumeni Syndrome (LFS). The mutation of the tp53 gene causes that the protein is not blocking the division of the malignant cells, and the result is only one - the cancer grows. And that means we'll never win, not here in Poland...
The only chance to cure our son is treatment in Ohio, where a treatment protocol includes a gene mutation. In Poland, doctors are only able to offer us chemotherapy, which is in clinical trial phase and no one knows its effectiveness or side effects. We can not take the risk particularly now when our baby's life is hanging by a thread. Please help to save Tymek. Treatment in the United States is the only and very last hope. We know that the amount of money to collect is enormous, and the time is extremely short. We are aware that we may fail, but we can not give up. We will fight to the end because our child is dying. We beg, help us not to lose hope. Help us to catch our last chance to keep Tymek alive ...
