Milos Neuroblastoma Fundraiser

by Milos Neuroblastoma Fundraiser in England, United Kingdom

Milos Neuroblastoma Fundraiser
We did it
On 26th May 2022 we successfully raised £4,567 with 155 supporters in 69 days

We are fund raising to provide Milo with the best chance of accessing treatments to fight the cancer and its side effects

by Milos Neuroblastoma Fundraiser in England, United Kingdom

 

Thanks to all those that have raised funds and donated, raising £5000 so far!!! We are blown away by the support and generosity. Due to the time restrictions on Crowdfunder we have now moved to Gofundme to continue the fundraising so hope you will continue to follow us at www.milosvoice.co.uk or get in touch [email protected]

 

In March 2021 I played distracting games with my four year old son on what was about to become our last day of normality. We were waiting in a hospital room when the words from a ‘then’ stranger, caringly announced with professional assertiveness our unexpected and terrifying reality; “This is serious, your child has cancer”. The specialist’s words hit me so hard I couldn’t move or breathe. Milo had come in that day with a sudden limp, that’s’ all a limp!. Words cannot describe the feeling when your child is under such a life challenging threat; it is the most violent informed attack to ever come your way. I was stunned, in total shock and disbelief that such devastation to our happy world had crashed in on us so unexpectedly. I gazed at our beautiful boy trying not to show him my immense fear of what was ahead; what this cancer meant and was there a cure?  Milo looked up at me with his innocent wide saucer-eyes and said “does this mean I’m ok mummy, are we going home now?”.

Aggressive stage 4 high-risk Neuroblastoma is a rare child-hood cancer that Milo has been battling since 2021.  At diagnosis it has a very low success rate of long-term survival. Milo had a sizable tumour in his tummy and the cancer had spread to 95% of his bone marrow and throughout his entire body, including liver, lymph nodes, spine, legs arms, pelvis; a cancer aggressive by name and nature.  The treatment took a toll and he became wheelchair bound and registered as disabled; hardly able to walk far for the entire year.

Treatments phases have been intense and very gruelling including:

  • induction chemotherapy (over 80days)
  • additional chemotherapy (over 42 days)
  • lengthy abdominal operation and high intensity care 
  • high dose chemotherapy & stem cell transplant (with an almost 2 months isolated hospital stay). Milo suffered severe side effects from this treatment including veno-occlusive disease of the liver. 
  • 14 cycles of radiotherapy – where he had permanent tattoos on his body to align the machines to. Milo had to stay totally still for radiotherapy treatments and we could only reassure him through an intercom system 
  • Currently, immunotherapy over 6 months. 

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If a child reaches remission, the relapse rates are as in the title still, HIGH Risk, and then it becomes even more difficult to treat. This is why we are asking for donations.  Many pioneering trials are offered; mostly not on the NHS and are outside the UK at substantial cost that can help prevent its return, or, if funded in time give chance of treating its return with higher success outlook. The cost varies on choice and place and treatment required. Information and available trials can be found on the ‘solving kids cancer’ website who will advise us on best options if we get funding in place. Trials can cost as much as £250,000+. 

We also have to consider the long term side effects of treatments given so far.  Many necessary toxic treatments have taken place to try to save him, but they come with their own threat of affecting his liver, spleen, kidneys, bowel,  teeth and fertility, to name a few that are at risk of not recovering from side-effects or succumbing to late onset toxic effects, that have been explained to us.  We ask you if possible to support us by helping to give Milo the best chance possible.  This page will continue to inform you of our journey past, present and future. We will share when any funding is used in helping Milo directly to access suitable trials, treatments or to overcome the many health, physical and mental hurdles that we are also told we are likely to face now and in the future.  Become part of our journey and his life; follow your donation as we go forward hoping to reach our target. We will continue updates on donation totals and any related costs that they will be used for.  

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Milo’s story.

A normal boy at energetic play; a bit lazy on a walk but so are his two sisters. One day he started limping and said it’s his hip. The GP referred him immediately to a paediatrician and it changed our lives. Our life has thereafter become a daily introduction to next stages. An operation to insert Hickman Lines into his heart; to feed chemo, drugs, blood transfusions etc through them into his body was our introduction to what lay ahead. They are a constant fixture into his body; he calls them his babies as he has to be protective of them. His low immunity meant always being isolated at home or during his regular hospital stays.  Covid tests added to his fear, he hated the eventual sore regularity, burying his head and screaming ‘go away’ as they hurt and gave him nose bleeds.  Regular blood transfusions take place and are part of normal life past and present. The regular hospitalization for Milo means he and his sisters aged now 7 and 3 cry for each other and all miss mum or dad  as we alternate our 24/7 hospital stays to be with Milo.  Covid added to frustrations of living at Bristol Childrens Hospital.  No siblings could visit, no classroom lessons, no play room, one parent only at any time.  It added to Milo’s plight as he should have started school; instead he was fighting for his life separated from child-hood normalities.

We keep him well informed about the many machines, equipment, and different faces necessary that to him are invading his space and his little defenceless body.  He accepts and trusts all the care as we tell him he will be fine in a room alone receiving radiation as we read stories over an intercom, and advise ‘you must stay really, really, still’ and he does.  Another time it’s a scanner he is under, we say it’s looking inside you and he can see those images on the screen and with his inquisitive nature thinks that’s so cool and boasts about it to his sisters on video link. He is brave, interested but when he asks ‘why aren’t I better’ it’s a reminder that some information is best left to his innocence that mum and dad can fix anything and we are certainly doing our best to.  There are so many examples, too many to mention but the marvel of stem cell harvest is one to boast about scientific advances.  The machine and operators were exemplary, for Milo it was a long time lying still admiring the technology over multiple days with another invasion that took cells from his body.  He was so proud that he produced a record amount and his specialist praised it.  His stem cells were given back after high intensity chemotherapy was administered to help his body recover and build his brand new immune system. 

The family are fund raising to provide Milo the best care available to:

  • Keep his cancer away – assessing life saving treatments in the UK or abroad if needed.
  • Access the most appropriate and life saving treatments (UK or abroad) to treat cancer if it returns.
  • Access appropriate services and medical care to manage associated long term consequences and side effects from his treatments now and into his future.
  • Provide and maintain any medical equipment or lifestyle changes to sustain a good quality of life.

We feel blessed we have three wonderful children but such an illness brings insecurities to the entire extended family.  Milo is not just a 5 year old who has faced the most horrific year of pain, fear and uncertainty of future.  He is a charming, animal-loving, nature-observing child; full of humour and chat.  He is adored by his entire family and staff at Bristol and Gloucester hospitals who have all worked hard under difficult covid rules to give Milo every chance possible to get to remission.  He is currently on immunotherapy treatments until July.  Then we have a review phase to see how he has responded to treatment. Every ache and pain puts us in fear of ‘what if’ it has returned, we are only just starting our direct fund raising for him; hoping to get near that target.  We have to be prepared for that aggressive ‘what if’ in hope we can one day reply to Milo’s question. “Am I better yet mummy, can we go home?”  We long to reply ’Yes Milo, thanks to people who cared’.

Please contact us if you have fundraising ideas, just want to say HI or want further information – [email protected]

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