I always struggled to watch adverts on TV about families being told their loved ones had cancer. Never really knowing how it must feel to hear those words; but now I don't have to imagine because it's our reality.
As of 12th December 2016 we became one of those families you hear about. We were told that our precious little boy had Neuroblastoma- a rare childhood cancer affecting fewer than 100 children in the U.K. each year.
As tests promptly started each piece of news seemed more devastating. I still find it hard to see Reuben's name on paperwork next to the words: stage 4, high risk, metastatic neuroblastoma. As in 50% of cases of this aggressive type of cancer, his primary tumour was found in his abdomen but had already spread to bones and bone marrow before we had any idea.
Just weeks before he had played alongside friends at birthday parties and attended pre-school like every other happy 2 year old who was really looking forward to Father Christmas visiting.
He spent his 3rd birthday and New Year's Day in hospital, has undergone MRI scans, bone marrow and tumor biopsies, a blood and platelet transfusion, two rounds of chemotherapy to name but a few procedures. There are lots of tears. Too many tears. Every single day.
His journey has just started. Everyone we have encountered working in our amazing NHS are doing their very best to help our little boy. But the statistics make for grim reading and there will come a time, we hope, when he will be in remission and eligible for further treatment not yet available in this country.
The numbers are just that, only numbers. And I have so much hope that Reuben will beat this horrible disease and live the life of a happy, cheeky little boy again. He's already taught me not to underestimate him- lots of it he doesn't like, but his smile soon returns and reminds me every time why we are doing this.
We have been overwhelmed by love, thoughts and prayers from so many people. There is no doubt that he is one very loved little boy.
Over the next year we will be turning our attention to fundraising efforts to help raise funds for overseas treatment once he is in remission. The initial costs for this are anticipated to be £250,000.
Thank you so much for reading his story so far. Please help us do everything we can to make it a survivor story he can tell in the future.
Thank you so much for your support
Jessica & Kulwant Virdee xxx
✋ all the emojis!!!
Reuben’s latest set of scans and assessments show no evidence of neuroblastoma cells
So we now onto the next steps where we will be heading to New York to be part of the bivalent vaccine trial. Steps that all of YOU have made possible thank you thank you thank you for all the love, positivity and support you continue to show us. Reuben’s army of fighters are a force and have helped bring us to this point.
But hands down respect to this absolute warrior, superhero, fire sword pirate who has fought so fiercely for his childhood over the last 19 months. I am so proud of you!! ✋ We are anticipating a very quick turn around and expect to be New York bound by next. Thank you so much for all the fundraising we might need to do more in the near furture for all the assements/scans that he will need for the next 2 years and we will continue this with solving kids with cancer who have supported us without. Http://solvingkidscancer.org.uk/campaigns/Reuben-birder/donate/ So we will be closing this page! Thank you Thank you again for everything you have done!
This time 12 months ago, friends and family started fundraising towards the staggering £250k target. We didn't know precisely at the time what we were raising money for, but with the terrifying relapse statistics in my head I got to work researching all treatment possibilities to help prevent that happening.
YOU spread his cause far and wide and month on month we watched, fascinated, as the go fund me total steadily increased. We are in absolute awe of every one of you who have taken our boy into your hearts and raised money for him in so many different ways. THANK YOU!
Over the forthcoming weeks we have a lot of important decisions to make in terms of how we secure Reuben's access to a vaccine trial in New York designed to prevent relapse. Nothing is a guarantee, it is a trial but showing huge promise with those currently enrolled.
As an oversees patient, the medical costs alone for participation in this trial are huge. We will need the help of a charity to gain access and without them Reuben will miss out, despite the success of the fundraising so far.
We will update you as soon as we can with more detailed information about next steps. I remain confident that you have given him the best chance possible and will continue to support us as we make sure he can access any treatment of benefit to him both now and in the future.
Happy Friday Hi5ers
Reuben is just over half way through the first cycle infusion of his immunotherapy treatment and it's been a very difficult week.
My anticipated worries about nerve pain were overshadowed by his chosen reaction to the antibody. Once again showing that he likes to go off manual and keep us all on our toes! His body tolerated the infusion well for the first day but overnight his throat restricted and he had breathing problems. This resulted in him needing constant oxygen, his gorgeous little face overshadowed by nasal cannulas for the last 5 days.
As a result, the infusion had to stop and be gradually increased. It's still not at full rate because of the reaction and as this is the first cycle his consultant is cautious for him to complete the 10 days with minimal side effects rather than focus on the rate of the infusion. The idea being that as the cycles proceed, his body should be able to tolerate it better.
Mid week was a particularly low point as Reuben also has allergic type reactions to morphine. Being on this continuously for 72 hours mixed with the other drugs he is taking unfortunately led to hallucinations and confusion. A very very scary day for all of us.
I'm pleased to say that he's turned a corner over the last few days and has managed to join in some of the festivities on the ward including a visit from Oxford United players who he enjoyed webbing as Spider-Man and told them he supports Liverpool!
We are crossing our fingers and toes that we get our boy home on his birthday and in time to celebrate Christmas.
But with a looming 10 night hospital stay in front of us, Christmas has come early to the Virdee household.
This is Reuben's very own tree, complete with the most special and precious of decorations: his beads of courage. Measuring over 4 meters of hundreds of beads, each one representing a procedure he has endured over the last 11 months.
This time of year is bringing very mixed emotions, as we can remember so vividly the pain and torment our little boy was in. It's been one hell of a year. But thanks to our amazing NHS services, the most special friends and family, and the absolute grit, determination and strength of character from super Reubs, we're in a very different place now.
Please don't think of the NHS as free. Many of us work hard and pay the taxes that fund the fantastic professional care we all benefit from, including the extraordinary care that Ruben is currently receiving. I am full of admiration for you and your family in the strength and resilience you are showing in dealing with your personal nightmare. Ruben might be unlucky in health, but so very blessed with his close family's unflinching support and love; how lucky is he in that.
WE are so terribly sorry that you Reuben and your family are experiencing this horrible horrible situation! We are thinking of you and praying for you every single day! Since coming across your story i cant stop think about it! Its heartbreaking and such a gorgeous little boy doesn't deserve this! You are all so beautiful and we are so sorry for the pain you are going through! DEAR GOD .... PLEASE PLEASE PLEASE KEEP HIM SAFE GIVE HIM HIS LIFE BACK AND TELL THE CANCER TO GO TO HELL! Sending all of our love !! xx
Wonderful news for everyone connected with the appeal!
I will keep Reuben and all who love him in my prayers. I know that God hears every one. I'm so sorry that he has had to go through so much ~ so have you. Donna Keller
Thank you for the update. Its a long and challenging journey but with the love and support from his mummy, daddy, family and friends Reuben will continue to build and develops his inner strength to conquer this. In my thoughts and prayers x
lovely to read your comment today must feel amazing to have him home. Enjoy x
Aww it's lovely to see him enjoying himself. Good luck with the next step little Man U can do this u got a great family x
I am soooooo happy to hear this news. Keep the FAITH! sending much love xxx
Hi there I am sandy Virdee's niece and have friends who want to organise a run to raise funds in Brussels. Can you let me know how to proceed with this or how they can link their efforts to this page? Thanks Trish
Hi Reuben my prayer is that God takes this illness and bring healing in your life so that you can be a insparation to others across the world as well as to let the world know the power of prayers. God bless and keep you safe and sound. Your friend. Mark Daniels from Cape Town, S.Africa.