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Kubuś has just turned 3. Fortunately, he does not quite understand his illness. He has no idea what his tumor is, he does not know what death means. What he knows is that, he has to be transported by ambulance for his “lights” treatment (radiotherapy). He knows he is ill, but he has no idea how dangerous the cancer in his head is.
So far we have not talked widely about his diagnosis. Until August 9th, 2017 we were really happy family with two wonderful boys: Kubuś (3 years old) and Jaś (1,5 years) – real idyllic and plan for a wonderful life. On that day our beloved son Kubuś, without any disturbing symptoms before, said his head hurts... and well, we thought it was just a headache. But when in the afternoon he started to have swallowing disorders, could not speak clearly, he couldn’t keep his balance and started to stagger – we felt it was not a “normal” headache.
We went to the hospital and even then we did not know how our lives would change and what a nightmare was to start. A series of tests, dramatic waiting and finally those words that put the knife in our loving, parenting heart: “Dear Mom – the CT is not correct. There is a tumor in the head of your beloved son”. The more we’ve researched, the more catastrophic the situation appeared to be.
Kubuś has in his brain Diffuse Intrinsic Pontine Glioma (DIPG). This is one of the most lethal and malignant children cancer. It’s a silent killer that can “turn Kubuś’ life off” at any time. The tumor is inoperative, the biopsy poses great risk and the prognosis is merciless… Imagine how a parent feels, when being constantly told that his or her child is dying?
The condition of Kubuś deteriorated with each passing day – he was unable to do the most basic actions on his own. We looked at our son’s half-conscious eyes, unspoken sadness on his face and mumbling speech. He just wanted to lie down because he had no strength for anything else. Fear for his life became our permanent guest. We did not even think that one can be so afraid…
We obediently agreed to the treatment proposed. First stage was chemotherapy, but after second cycle it turned out that there is no response. The tumor grew and hydrocephalus appeared. First live-saving intervention – a drainage valve had to be implemented into brain that drains the excess of fluid that squeezes the brain. Since chemotherapy did not work, it was the time for different approach – radiotherapy. “Two of three children respond positively – hopefully your son will be among those two” – the doctor’s words continued to sound in our ears. But radiotherapy is not a treatment – it’s just buying time to find something that will allow him to live on.
Desperate search began. We sent e-mails all over the world asking for second opinion and other treatment options. “We are very sorry, but we cannot do anything for you”. We read all of them and prayed – “God, please, let him live! Make this radiotherapy work!” And in the middle of the irradiation we saw a miracle. Kubuś slowly began to rise, speak, smile and have fun. We’ve almost reclaimed our child from before the diagnosis. For some time we managed to get our son out of claws of this monster! However, the doctors say that we have little time. Without further treatment, the cancer usually returns after 3-9 months since the end of radiotherapy. Statistically this is the time left for children with DIPG.
But in the meantime HOPE appeared – so much needed! Kubuś was qualified for innovative CED (Convection Enhanced Delivery) treatment at Harley Street Clinic in London. It involves the administration of drugs directly to the tumor through catheters that are placed in the head. This method allows to bypass the BBB (blood-brain barrier), so that the drugs reach tumor directly. This is an extremely expensive method. We do not have money to cover the costs of treatment, so we have to ask for good people help. We will beg if we have to.
20 children with DIPG have been treated with this method to date by HSC in London.
Half of them reacted to the treatment.
Three of them is now 2 years after the end of treatment and the cancer has not returned.
We no longer want to see our child pass away, we simply can’t. We will fight for him because he is our MIRACLE! Because we believe that he still has so much to see and do in his life. Because he deserves it! Every day we face difficult decisions, we talk about things that are painful for us when we think about them. We decided that if the available treatment did not help, we would not push for persistent therapy, we would stop. We will take Kubuś home and we will enjoy time together. When this tumor returns – it is unstoppable. But while there is hope, nothing will stop us from fight for his life.
Please, help us save our little son’s life…