Please Read the below Story about Slavomir (Slav for short).
Our lives completely changed on 18th of January; when our youngest child Slavomir (Slav for short) was diagnosed with very rare type of cancer: rhabdomyosarcoma.
Up to this time we would not even know that diagnose like this exists.
It all started with sudden stomach pain 2 weeks prior Slav was diagnosed.
We brought him to A&E on 30.12.2017 as he was complaining about stomach pain that was ‘on and off’ and also about back pain. The A&E on that day was crowded, with children suffering from stomach bug. After couple of hours – we were discharged with diagnose of ‘constipation’ and prescription for Movicol.
Two weeks on Movicol did not ease Slav’s pain too much. So we went back to A&E on 15th January 2018 with referral from our GP for further investigations. Three days later after MRI and bone marrow biopsy – we got the diagnosis of cancer.
I was in the hospital with Slav and my husband was at work that day.
I would never forget when Doctor asked me if we can have a chat. I followed her through the corridor to the small room where 4 other professionals were waiting for us. Two of them were holding plastic cups full of water and one of them box of tissues. I initially refused to go in. I stopped just outside of the door, staring at those people and only thing I said was: This is too scary…
In that evening they told me Slav’s diagnose, in that small room, full of tears, without my husband being present. They called my husband after and they left us together in that small room again, waiting for them to tell him, but they were not coming… my husband saw my face full of pain and tears and asked me what’s was wrong. I told him: “I cannot tell you. I cannot.” Then he started to cry….
Two days later we were transferred to different hospital to children’s oncology ward, where we stayed up to 2nd February 2018. Slav went through so many examinations during this time. He got 3 different contrast agents for MRI, CT and Bone Scan, including gadolinium. He got central line/Hickman line inserted on the 25th January 2018. Week after – the Hickman line had to be re-positioned as it was misplaced initially –they put it too deep – into the right atrium of Slav’s heart. This was causing him very strange feelings, that I believe was arrhythmia and he described his heart being tired, weak and soft. Initially I thought this feelings were the side effect of Morfin he was on at that time. But CT of his chest that was done for different reason – detected this problem – completely by chance. Subsequently Hickman line had to be re-positioned and pulled 3 cm up, in order to take it out of Slav’s right atrium of his heart.
MRI revealed main tumour in Slav’s foot, just under the arch, completely hidden, as it was filling the arch under his foot, so we did not notice anything, it was not causing him any pain or discomfort. On the 25th January the biopsy sample was taken from Slav’s foot, that definitely confirmed the rhabdomyosarcoma, with translocation called PAX3 (2,13).
The first chemo started the very following day on 26th January 2018.
As a mother I would never be ready for all side effects and for everything what we went and what we are going through.
As a mother you do not want to and you cannot tell your child that he/she has a cancer.
You are never ready for that…
We do not understand what other parents of children with similar diagnoses are going through.
We pass fundraisers on the street, shouting and banging with buckets of coins but we do not understand until it is touching us, or it is our own child…
Everything else is meaningless in that moment. Time and date does not exist anymore. There are no days of the week. There are no material goods. And the money has only value of the health for ever after.
Slav started to lose his hair on 7th February. He appeared so upset, asking all those questions about what his friends would think of him. He said he does not want to go to school anymore and he asked me to get him a wig. His hair is falling very quickly and it is everywhere…I am sure it is bothering him around his neck. But he refuses to shave his head even I told him as a mother I would shave my head with him. He told me that he is going to fight back.
Slav’s chemo in Ireland is scheduled for 27 weeks with additional maintenance treatment after. However our consultant is not giving us good prognosis.
There are different protocols used in EU and USA. There are different treatments used as well with different outcomes. And we have to try everything possible to save our lovely boy.
Slav is always smiling, spreading a good energy around and he is grateful for every day. I was always thinking that he is probably as grateful as we kept him even they falsely told us that he will be born with Down syndrome or deaf or blind – when I was pregnant.
Slav tells me every day: “Mam, you are the best Mam in the world. You are doing so many things for me, I love you”. He never forgets to tell me this; every day…
Slav is always waiting for his dad every day when his dad comes from work and he asks him: “Dad, how was your day? How are you today?”
Slav is very humble person and always caring about other people. He never asks for designer’s pieces or brand shoes. He puts love first!
He does not deserve this and there is no child on this earth who would deserve something like this. Never.
We, as Slav’s parents, have to try everything possible on this earth and beyond… to save our lovely boy.
***The Gavin Glynn Foundation Team have stepped in to help Nadia (Slav Mum) and reach out to all worldwide experts in Rhabdomyosarcoma so the family can have the best experts review Slav diagnosis and recommended treatment.
We The Gavin Glynn Foundation believe that all families should have access to 2nd, 3rd and 4th opinions if required, that way each family knows that they are fully aware of the best possible treatment options available anywhere in the world for their child.***