We will never give up my little son...
Many times in the past I was wondering how it is possible for mothers to deal on a daily basis with all issues connected with their children's disability, illness and still be happy and smiling regardless of what life brings.
Painful answer was round the corner. My three years old son was diagnosed in October with brain stem tumour - it was like sentence for us.
Extreme symptoms of cerebral oedema, muscles weakness to left part of his body together with abnormal pupil movements. During one day he had also obstructive hydrocephalus and a risk of brain mass displacement due to tumour oppression.
He's never been sick, not even had a running nose, had incredible resistance to everything, but he had "this". When he was 7 months old he had his immunization. Few hours after, his temperature raise to 41 and he was screaming with pain for many hours. It was terrible to listen to. This was a new type of vaccine offered to all 16 weeks old children - 7 in 1. New, experimental combination of DTaP/IPV/Hib with Meningitis C and Pneumococcal, which was recalled a year after.
Something what supposed to be good and help in our life turned in something different. None of the vaccine supporters would accept what just happened to our son. We couldn't hold him as every touch was painful for him. He didn't react to our voice or recognized our faces. His nervous system experienced shock. He slept through whole of next day - we thought he was getting better and we were living not knowing that what we thought was consequences of side effect of vaccine was in fact a result of his tumour growing.
Now we divide our live in two parts - before and after vaccination.Since then he is not interested in his toys, he speaks less than before. Always very smiley and happy - now not so much, just looks around without emotions. He was always a good sleeper - slept through whole night without any problems, now he suddenly starts waking up with terrible scream, like from a nightmare and cries up to an hour and then goes to sleep again like nothing happened. He never had any problem with feeding and now he struggle to eat normally and chokes. I exchanged all the bottles. Another month, another issue or problem.
Adas starts to walk on his toes. We went to see a doctor - head of hospital orthopaedic ward to check on him but according to that doctor everything was fine and Adas will grow out from it. Typical doctors talk..
Sometimes he was afraid of strangers or everyday things or activities which he not used to do before. Singing toy he got from his godmother he loved before now was unbearable for him. Any kind of music like church organ makes him cry.
We have had many consultations with doctors about his nightmares or uncontrolled cry and it all led to vaccination side effect as a starting point.
Situation we were dealing with many hours and days after vaccination was likely to be encephalitis, brain oedema which damaged glial cells which was a foundation for a tumour. Two years after vaccination my little son who couldn’t listen to the music any walked only on his toes reached almost the end of his life and I was trying to prepare myself to say goodbye kissing every inch of his body.
One day he suddenly hold his head and came to me saying - Mummy it hurts! He was closing his eyes from pain and he started to vomit heavily.
What kind of unbearable pain he was in I find out later.
My sweet boy was suffering for 10 days pain which is equivalent of bangs on his head with hammer. We were send home three times from hospital as according to medical staff in there it is normal that children have headaches. It was normal for them that he is vomiting all the time. When I asked about CT scan they were only smiling and saying that there is no need for that. That there is nothing to worry about even though he almost fainted.
I finally called Emergency and begged for CT scan. Soon after that scan you could notice change in all medical staff approach - they were running around, not looking at me and one of doctors was even crying. Neurologist came to us and said that he is really sorry but tumour is very deep in brain tissue and can’t be removed and once again that he is very sorry.
I found myself on a floor screaming that it cannot be true, that this is a bad dream, that they are wrong. Cruel helplessness. We were taken by ambulance from Basildon hospital to Great Ormond Street Hospital in London with an assist of neurologist. Adam was half conscious and barely moved his left side of the body. Even though he was still trying to smile and saying - Mummy that’s nothing, nothing....
Sad walls who had seen many tragedies. I have no idea how I was functioning during these days. I didn’t sleep, eat or drink. I stayed by his bed all the time to make sure that I will be there when he will open his eyes. First surgery, few hours after we were admitted lasted four hours. Doctors performed endoscopic punched of third verticals of the brain - Adas came back with part of his scull taken out, all swollen and crying. After three days another surgery - worst seven hours of my life when I was waiting and preparing myself for his disability.
Adas might not be able to see, to speak or walk. He might not survive at all... Only 10% doesn’t have any complications. We were in a very small percent which doesn’t mean anything to pharmaceutical concern. We are exception. Occurrence which happen sometimes but it is for greater good. My son reaction to toxoids and adjuvants finished in permanent damage to his health.
It says in small print on a leaflet about vaccination that "something" may happen but you never think it will happen to your child. A letter send to NHS about post vaccination reaction is probably on a pile with other letters from concerned parents. Maybe if we didn’t believe to doctors saying that everything is ok, maybe if we have paid to have CT scan done privately year ago my son tumour would not be so big and could be removed at one go, maybe...
St. Christopher Hospital Chapel full of tears. Nun burning candle at the altar and saying a prayer for my boy. Phone call from a ward that surgery has ended. I went quickly to ward corridor to be there when he wake up. I could only hear his scream and Adas trying to tear off all tubes out of his head. He can’t see yet but he can move and speak. I'm beyond greatful for what surgeon Mr Christian Aquilina has done. In intensive care unit we have to go through polyuria, spasms, oedemas etc. Adas is not moving again, can only watch us and is in tremendous pain. His head, neck and back hurts, you can barely see his eyes.
He is swollen, blued and have abnormal blood pressure but is getting better every hour. I'm only person who can give him his medicines. Morphine pump, antibiotics, tubes with cerebrospinal fluid and then another anaesthesia and MRI scan - they managed to remove more than a half of his tumour. When neurosurgeon seen my son on a third day standing on his own feet he started to pray and thank Good for this miracle. Adas undergo a very complicated surgery and he is showing amazing courage and strength.
The tumor impaired his perception, causing abnormal sensory integration. Now for hours he can listen to music, fairy tales, can walk less on his tiptoes, as if to make up for what was taken away from him by the tumor. We came back home. After two weeks the new life begun. Different world to that on the ward, to everyday life, where you have to do your shopping, you need to eat, but nothing tastes good anymore. Disturbed sleep pattern, we go to bed at 3am, 4am ... at 7am. Change of diet, which absorbs the entire household budget. Organic vegetables and fruit, meat-free, condensed doses of antioxidants, protein shakes, only natural ingredients. Manuka honey and agave, linseed oil, black cumin, pomegranate, pumpkin seed and cashew nuts paste, a diet rich in high content of polyphenols, oxindole alkaloids, gravioli fruit, reishi and schitake mushrooms and so on… We are blessed we met amazing people from all over the world who helped us. Support, open hearts, everything for Adas.
Next month we have positron tomography scheduled, which will tell us the prognosis – the remission or progression of the tumor and its stage. After the tomography we have psychological tests, a month later, an ophthalmologist assessment on the extent of eyesight’ nerve damage. Endocrine problems, a consequence of taking strong steroids, are nothing compared to the location of the tumor in the brain stem, where each mm more from these 40 per cent left, are threat to his life. Until recently, I followed the fate of Ashya, 5 year old boy with brain cancer whose parents took him away from the hospital in Southampton, loosing trust in doctors. We also won’t agree to radiotherapy, only to the proton therapy, which brings less risk of future complications. Unfortunately this treatment is not possible in the UK, only in Florida, Munich and Prague.
Six weeks after the surgery he got streptococcal infection, the risk of sepsis infection, antibiotics… another battle won. We fight on. He feels better, his physical abilities are improving. He won’t walk for more than 50 meters but is progressing each day. Relatively calm when he listens joyfully to his fairy tales, like many 4 years old toddlers, squeezing every minute out of it. He won't go to the nursery. Even the slightest impact in the part of his head with no skull may result in his death. Breathing monitor was his Christmas gift.
We were given extra time.
A little prayer, hope for more... but life has a taste, a taste of Adas’ happiness, who can’t see his post-surgery scars. We have the strength, because we love. Every day without pain and symptoms is a miracle and belief that this nightmare is over. With my motherly heart I ask you to say a little prayer, I ask you for positive thoughts for Adas to win the most important battle. We will never give up my little son...
How can we help Adam ?
Polish Facebook support group for Adam:
Donations from within UK:Bank Account: Barclays Bank, sort code: 203469, Acc No: 73347621
Please add description/reference: FOR ADAM
Donations from outside of the UK:Bank Account: IBAN: GB05 BARC 2034 6973 3476 21
SWIFT CODE: BARCGB22
Address: Magdalena Undro, Barclays Bank, 9 High Street, Grays, Essex, RM17 6NL, Great Britain
Please add description/reference: FOR ADAM
Donations by PayPal:PayPal account, direct donation for Adam