Help 13 year old Slav fight cancer

€72,638 of €150,000 goal

Raised by 1,175 people in 10 months
Created March 11, 2018


22nd of August 2018:

The update, please read & share! Thank you!


Hi All, We had a meeting with our oncologist last week and I asked him: How many survivors do you have with Slav’s diagnose? He told us: Zero. BUT.... we know there are survivors abroad, we know that. This information is only telling me that there is something wrong with the treatment here, is not it? No trials, no different doctors to discuss. Not a sarcoma specialist in Ireland at all... We know that standard treatment in Ireland which Slav is getting now is unable to completely cure his disease and incomplete cure means just one thing. We are in contact with several hospitals and specialists in the US, we found number of relevant trials abroad. There are viable options in case of relapse, but we are trying to find also follow up treatment that is needed. We already underwent genomic and chemo sensitivity tests. They revealed that Slav has 5 amplifications of certain genes, but we cannot chose chemo just randomly, because it can make it worse and most of chemos can cause secondary cancer too! Now we are awaiting results for another test (Oncologica), which hopefully will help to answer the question, what treatment is the best for Slav at this moment? As mentioned standard treatment is unfortunately giving the same bad outcome, so we cannot rely on standard treatment and expect miracle. We cannot use random chemo. No stone will stay upturned in our effort to do everything possible to help Slav. The cost related to all of this - cannot be paid by HSE so we have to go privately. We got a great help and support from the Gavin Glynn Foundation which we really appreciate, however there are still many expenses to pay like tests, consultation fees, oxygen therapy... We would not be able to handle it without generous support from all of you! Our aim is to get the treatment for Slav abroad which would give him better chances, but we all know that cost of medical care in the US is extremely high. Full set of tests and scans costs over 40k USD, not including the treatment itself. It was the reason we increased our target in this fundraising few weeks ago. No matter how hard we try to find better treatment, we cannot make it alone. So, please help Slav if you can. All donations through GoFundMe go to Slav's trust account and serve the only purpose - pay for treatment which can save Slav.
Please, be aware that we already spent over 18k on fees, tests, consultation in the US and extra therapy that is not HSE funded.
If we are accepted for the assessment abroad - mentioned above - we would not have enough at this moment. Please, help us to be ready and to go as soon as needed, as soon as we get accepted. Please, share and support Slav’s treatment. Please, help us to save our lovely boy!
And on positive note – I am in touch with few parents of the children from Ireland, who were told here in Ireland that nothing else doctors can do... and they approached hospitals abroad and their children are doing well! You might hear about them from the media! Please, lets give this chance to Slav as well!
Please, help and share! Thank you so much! We are forever grateful for your support! Nadia & boys.

 

===================================

5th of July 2018

Hi All, 
I did not post for a while, clearly because it was too busy and I had to digest everything first... We had the PET and MRI scan, while PET scan was not accurate (looks like falsely negative due to medication Slav is on); the MRI showed bone involvement and disease widespread around Slav's bones. Our treatment in Ireland is for 27 weeks and we are now in week 24 (only 1 chemo left next week). We are slowly but surely hitting the wall here.. We were advised to start maintenance treatment here in Ireland, as per ONLY protocol available here. But is this really the situation we want to maintain and NOT to treat Slav? Maintenance treatment is only around 30% of strength of the first line treatment. If Slav's bones did not clear up to now - how maintenance is going to help? Unfortunately the protocol used here does not consider widespread disease around the body, it would consider only measurable tumour and it is not possible to measure affected bone marrow in cm.... we were also told by our oncologist that this is only "treatment" available here in Europe and if we want something else we should go to the US. I am sending emails today abroad and I feel that our time is coming and we would need a HELP abroad asap..... and your help please... Thank you, Nadia

 

23rd of May 2018

Hi All, we got some exciting news! Slav is going to see a sarcoma specialist in the US in the middle of June!
This is only the first step to get possible
treatment abroad! We would not be able to achieve this without your ongoing support!

However possible treatment in US would COST us more THAN is our goal here so there is no limit for this fundraiser...
Thank you again for your ongoing support! Nadia & Slav

 

1st of May 2018

 IMPORTANT UPDATE! Hi everybody! Please, read and share! Thank you!

So... we got results of genomic tests that we were waiting for – after such a long time! Based on this 27 pages report we already contacted experts abroad and we found out that there are few trials available in the US! In addition to that we had a very long phone call with a Dr. from the US and I would say that the phone call was eye opening re: treatment.
We understand even better now about the treatment that Slav is getting here in Ireland – it is not curative. We understand now that even we were told by our oncologist that there is a 5% chance of survival in the next 3 years = there is no cure for Slav in Ireland. There are no trials available in Ireland for Slav’s diagnose at all! So our only chance is to access trials in US.
I know it might be confusing for some people as to why we aren’t in the US yet, however we have to complete the first line of treatment here in Ireland – in order to be able to access possible treatments abroad . However this type of cancer is so aggressive that we clearly have to be ready to leave and to start other treatments as soon as possible – after finishing the current protocol in Ireland.
That’s also the reason why we started the GoFundMe fundraiser in advance – to be ready then! At this moment we are trying to get an appointment in the US with 1 particular Doctor and as soon as we get accepted – we would visit him in order to discuss our future treatment there. There are also other options and if we do not get accepted by the first Doctor/Hospital - we would reach out and contact other doctors. We will let you know the name of the Hospital as soon as we get accepted! As you can see – everything is taking such a long time and this is yet another reason as to why we need to be prepared as soon as we are called! Please, help us to save our lovely boy!
Please, share and donate – every euro will be used solely for Slav’s treatment! Slav is not fully aware of his prognosis here in Ireland and we wish we could tell him when we will get an appropriate treatment for him, rather then telling him there is no cure in Ireland! Please, please, help, Thank you!

All donations through this GoFundMe page will go directly  to the "Help for Slav" trust account and will be solely used for Slav's treatment
Thank you!

OUR STORY:

Slavomir is a spunky 13 year old boy from Bettystown/Laytown area (Minnistown) in Co. Meath.

At the end of December 2017 we attended the  A&E  with Slav due to pain in his back and stomach and his symptoms were initially misdiagnosed for constipation! We got prescription for Movicol sachets and asked to leave the hospital, without even blood tests done on that day.

On January 18, 2018, Slav was diagnosed with a stage 4 rare type of cancer Alveolar Rhabdomyosarcoma. Cancer spread into his spine and bone marrow. 

Slav’s 27 week chemo  regimen started in Ireland on 26.1. 2018 with additional maintenance and radiaton treatment after. However our consultant is giving us poor prognosis here in Ireland.

With this diagnose - the first line treatment is usually ok, however the problem is that in 95% it is back within a month or two - and there is no successful treatment/cure for this in Ireland/EU at all. They do not know what to do then.
The current treatment that is available in Ireland would - in 95% leave microscopic/residual disease that cause this to return. That's the reason we have to look for other options abroad. We clearly cannot wait if we fell into 5% at the end or not = as it can be too late then...

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. .
Slav is very humble person and always carying about other people. He never asks for designers 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.

Slav’s  family should be concerned about one thing: getting Slavomir the treatment needed. Second opinions and promising procedures available abroad are incredibly expensive. The family wants to do whatever they can to save their lovely boy’s life.

We have created this Go Fund Me page in hopes that they can focus on his care, and not the costs they are facing. 
Slav’s social worker mother once helped people through vulnerable situations. Now she has quit her job to care for Slavomir. 

Please help lift the financial burden of treatment plus travel and lodging costs. Thank you.

All the money collected by this fundraising will go to the Trust account that was set up only for Slav and can be used solely for Slav’s treatment. Any remaining sum– will be always left in Slav's Trust account that was set up in AIB in Drogheda and will be available for Slav if further treatment is required for him.

  https://www.facebook.com/groups/239454736595683/



As a mother you do not want to and you cannot tell your child that he/she has a cancer. As a mother I would never be ready for all side effects and for everything what we went and what we are going through.
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 have only value of the health for ever...


AIB account number: 86 325 082
sort code 93 20 94
IBAN: IE35 AIBK 93 20 94 86 325 082
PayPal: nadinavvv @ gmail. co
m

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Update 18
Posted by Nadia Vavro
3 months ago
   Share
When...
...When you wake up in the morning, ready to share your good news with the world (about Slav) but as soon as you open the Facebook you find out that another boy gained his wings... ...When you are unable to talk then (here) and share anything for 2 days.
...When you feel that with every child there is also little piece of hope disappearing from this world. I was hoping for their bright future as well as I hope for Slav's.
...When you are ready then - following day to share the good news, you open the facebook just to find out that this happened once again - another boy... These type of news that are not shared in media.
...When you wake up another day and you just feel guilty for those kids and it is hard to share good news... that's it.
Breath in...breath out. .....ok, ....so I am here now to share with you guys that Slav's MRI was better then the last time, ALTHOUGH there is still residual disease and some spots of abnormal signals and our oncologist remains skeptical. We know it would be hard to achieve good outcome here - with no survivors in Ireland with Slav's diagnose and stage of disease. So we continue to pray and raise funds for Slav to be ready when needed... with quote "just for an assessment" for over 40K dollars - we know it would not be easy and we have to be ready. I am very happy to share good news with you all, although we are not out of the woods at all... and I am also very sad in these days after seeing pictures of kids who do not feel the pain anymore. I will remember them forever. Unfortunately there are so many...and there should not be ANY CHILD suffering like this. In between - we were pretty busy this past week with 6 appointments (3 x oxygen, MRI, GP visit and hospital meeting). Next week - we will start with the oxygen session on Monday, followed with a day in the hospital on Tuesday - getting IV bisphosphanates to strengthen Slav's bones + blood test + endocrinology + dermatology appointment + 2 more sessions oxygen + naturopath appointment. So this coming week is going to be extreeeeeemely busy... please, bear with us again if we are not here very often. It is not easy WHEN....

btw. We hope to meet you all tomorrow in Bray at 11am at the Sugar Loaf mounting car park for group hike - for Slav!
Details here:
https://www.facebook.com/events/437738443418074/
Thank you!
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Update 17
Posted by Nadia Vavro
4 months ago
   Share
Hi All,
I am sooo behind with everything, (update re: results below!) I am really sorry. Our schedule for this week is as follows:
MONDAY: Leaving 8.20am to Crumlin hospital for bisphosphanates and blood test (morning) + oxygen in the city in the afternoon. Back at 8.30pm
TUESDAY: Only day at home! cooking, cleaning, shopping groceries..breathing!
WEDNESDAY: cooking, Leaving 10.30am for oxygen therapy in Newry, back at 5pm
THURSDAY: cooking, Crumlin hospital, appointment at gastroenterology department (finally!) + preparing meals for Friday.
FRIDAY: Will be leaving at 7.15am to Crumlin hospital: Ultrasound of the stomach + oxygen in the afternoon, will be back at 7.30pm
So we really only have weekends to do nothing and just to have a rest and time to breath. It might not look so busy in writing, but it is difficult for Slav to eat between these appointments, because he has to eat in the car which makes it even worse - due to his stomach issues. We have to stop the car quite often.. So I am sorry if I do not answer, or if I do not post everything on time, I am doing my best.
Yesterday we got partial results from Oncologica and I am so tired to be excited about them, but I am happy to share them with you! They identified PDL1 protein in the sample provided, which means that Slav might be accepted for immunotherapy. I am very happy about this, especially because we previously did this test twice and it came back negative + positive ! What to say, I trust Oncologica with this test and we hope to have appointment soon with the doctor who (I believe) would be able to explore all options for Slav. My understanding is that this type of immunotherapy was never used in Ireland for children, so if we go ahead with this option - we would be definitely looking into options abroad.In the meantime Slav is doing as well as he can. We are struggling with food and supplements as it is difficult for him to digest food but I hope we will get more answers tomorrow in the hospital.
Also we asked for additional report re: genetic tests and we hope to get them by tomorrow as well! This report would identify genes - that might not be targeted currently, because there might be no drugs to target them (yet), but it would be good to know what else they have identified, as we hope there might be new treatments in the future.
But first, lets focus on PDL1 and see what is available for us!
Thank you all for being with us, I cannot Thank you enough. I also appreciate all your messages and every word you send me, even if I do not react immediately. But when we come home in the evening - I see that people are thinking of Slav and it makes me feel better! I also share your messages with Slav which always makes him smile! THANK YOU!
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Update 16
Posted by Nadia Vavro
4 months ago
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Hi All! Slav is saying Hi! We had a blood test last week and Slav's liver enzymes were suddenly 10 times higher, also Amylase and Ferritin is higher and we do not know why. We will go back to the hospital on Monday for more specific tests + bisphosphanates. Meantime, Slav is struggling to gain weight (at least weight is stable) and he gets sick now every day with excessive mucus in his stomach that causes him getting sick after meals. Slav's results might indicate problem with a liver and/or pancreatitis and this can get dangerous with chemo on the top. We took a rest from chemo, because with all what is going on - we are trying to find the balance. More chemo = more poison that Slav's body needs to handle... and we cannot exceed Slav's limits!
There are things happening in Crumlin hospital that is difficult to even mention here. There are children loosing their battle every so often... You meet their parents you see their kids and then...and you do not see these things on Facebook publicly, of course. I found it so upsetting when people share silly things on Facebook, I am so sorry, but there are kids with life threatening cancer and they are struggling and need a help!
There was a boy diagnosed only 2 weeks before Slav with the same diagnose and he unfortunately lost his battle... I am still in shock and struggling to accept it. We met with his mum quite often in the hospital as our boys used to have a chemo at the same time over the months. Slav does not know yet... I am afraid he is going to ask me how is T. There is not enough awareness about childhood cancer. People who are not directly involved - do not know how kids struggle and often lose their battles! So innocent! We need better treatment and if not available in the EU - we should have access to treatment abroad without hassles and without necessity to pay! So unfair!
It does not work like this: just give them more and more chemo...they cannot handle too much!
....sorry, I am just so upset because of this all. So unfair to all those little kids, so unfair to all!
We are still awaiting for results of Genetic tests that were supposed to be completed yesterday, however Crumlin lab did not send samples on time so we hope to get results next week.We hope results will help us to identify more targeted treatment for Slav without necessity to use random chemo and more chemo and get Slav even more sick.. I have to update hospitals abroad once we get results... Thanks for being with us!
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Update 15
Posted by Nadia Vavro
4 months ago
   Share
The update, please read & share! Thank you!

Hi All, We had a meeting with our oncologist last week and I asked him: How many survivors do you have with Slav’s diagnose? He told us: Zero. BUT.... we know there are survivors abroad, we know that. This information is only telling me that there is something wrong with the treatment here, is not it? No trials, no different doctors to discuss. Not a sarcoma specialist in Ireland at all... We know that standard treatment in Ireland which Slav is getting now is unable to completely cure his disease and incomplete cure means just one thing. We are in contact with several hospitals and specialists in the US, we found number of relevant trials abroad. There are viable options in case of relapse, but we are trying to find also follow up treatment that is needed. We already underwent genomic and chemo sensitivity tests. They revealed that Slav has 5 amplifications of certain genes, but we cannot chose chemo just randomly, because it can make it worse and most of chemos can cause secondary cancer too! Now we are awaiting results for another test (Oncologica), which hopefully will help to answer the question, what treatment is the best for Slav at this moment? As mentioned standard treatment is unfortunately giving the same bad outcome, so we cannot rely on standard treatment and expect miracle. We cannot use random chemo. No stone will stay upturned in our effort to do everything possible to help Slav. The cost related to all of this - cannot be paid by HSE so we have to go privately. We got a great help and support from the Gavin Glynn Foundation which we really appreciate, however there are still many expenses to pay like tests, consultation fees, oxygen therapy... We would not be able to handle it without generous support from all of you! Our aim is to get the treatment for Slav abroad which would give him better chances, but we all know that cost of medical care in the US is extremely high. Full set of tests and scans costs over 40k USD, not including the treatment itself. It was the reason we increased our target in this fundraising few weeks ago. No matter how hard we try to find better treatment, we cannot make it alone. So, please help Slav if you can. All donations through GoFundMe go to Slav's trust account and serve the only purpose - pay for treatment which can save Slav.
Please, be aware that we already spent over 18k on fees, tests, consultation in the US and extra therapy that is not HSE funded.
If we are accepted for the assessment abroad - mentioned above - we would not have enough at this moment. Please, help us to be ready and to go as soon as needed, as soon as we get accepted. Please, share and support Slav’s treatment. Please, help us to save our lovely boy!
And on positive note – I am in touch with few parents of the children from Ireland, who were told here that nothing else doctors can do... and they approached hospitals abroad and their children are doing well! You might hear about them from the media! Please, lets give this chance to Slav as well!
Please, help and share! Thank you so much! We are forever grateful for your support! Nadia & boys.
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€72,638 of €150,000 goal

Raised by 1,175 people in 10 months
Created March 11, 2018
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