Help us to raise money to give 14 year old Toby something to look forward to and the strength to face a fight that no child should have to!
Toby's story written by his mam Andrea.....
Tobias was born in November 2006 weighing 6lb exactly. Up until recently he was a happy, healthy, active 14 year old teenage boy. A typical teenager, he loves playing on his Xbox, spending time with friends and tormenting his little brother Leo. Tobias is a funny, loving lad who is popular and friendly. He looks up to his big brother Jack and adores his dad Michael. Tobias enjoys school life and chose engineering, geography and history as his GCSE subjects. Tobias was due to start his year 10 in September 2021.
We noticed an unusual lump on his right arm and following doctors, MRI and biopsy appointments, Tobias was immediately referred to specialists at the RVI in Newcastle. On 4th June 2021 we were given devastating news - Tobias has cancer. Tobias has a rare form of cancer called Ewings sarcoma. Ewings sarcoma is a type of cancer that can affect bone and soft tissue. Around 600 people are given this diagnosis each year and it is more prevalent in those between 10 - 20 years of age. Doctors are still unsure why Ewing's sarcoma happens.
So how did Tobias take the diagnosis?
Like a typical teenage boy! He was very shocked and asked all the relevant questions, "Am I going to die?" and "Can I still play Xbox?". In typical Tobias style, there was no crying or hysterics. At the time of the diagnosis, Tobias' eyes locked on to mine, his Mum. He looked at me with complete trust and faith that I wasn't going to let anything awful happen to him. The trust and love between mother and son, captured in that one single moment will be something that will never leave me.
The sole purpose of being a mum is to love, nurture and protect so your child thrives into adulthood. For me as Tobias's mum, the cancer diagnosis had just destroyed that. Being told Tobias had cancer honestly felt like an atomic bomb had detonated inside me. Time stopped at that moment and an internal silence has replaced it. Unlike Tobias who was being really brave, it took every morsel of energy I had to mute the urge to scream and cry. Never before has Tobias needed me so much. We then had the heart-breaking task of breaking the news to his father, brothers, grandparents, other family members and friends. It was like a ripple effect of absolute devastation. In particular, Tobias' little brother Leo still needs ongoing reassurance that Tobias is getting the best care and that he isn't going to "grow" or "catch" cancer like his brother.
Events moved really quickly after the diagnosis. Tobias had to undergo several scans, bone marrow biopsies and had a Hickman line inserted. A week later we were told initial staging looks promising, the cancer hasn't spread to other parts of his body. He will need regular monitoring to make sure that this is still the case. His treatment plan involves fortnightly chemotherapy. Doctors will then try to perform limb sparing surgery by removing the lump and grafting skin from his back. After this, Tobias will need further chemotherapy and radiotherapy. We have been told to expect this treatment to take a minimum of a year. Tobias will require several transfusions of blood and platelets. We have already had one emergency admission due to febrile neutropenia. Side effects of chemotherapy include hair loss, nausea and vomiting, neuropathic pain, anaemia, infection, dehydration, constipation and diarrhoea.
Where we are in the journey now....
We are currently 4 chemo cycles in to the treatment plan and have experienced nearly all of the above side effects. At the beginning of this nightmare, Tobias was looking to the positives - no school work, ringing the victory bell and generally being quite jovial. Long spells at the hospital and feeling very ill due to the evil side effects of the chemo have taken a dramatic toll on him. Tobias misses his friends so much even though they catch up now and then via social media. Like the majority of teenagers, Tobias loved to hang out with his friends. At a time in his life where his level of independence should be increasing, he is about as dependant as a toddler and requiring constant supervision and help with activities of daily living. It has been extremely hard for him, as a 14yr old boy, to be bathed and helped with toileting by his parents!
Losing his hair has been devastating for Tobias, who prided himself on keeping it perfect. He is now very, very self conscious despite wearing a cap. In solidarity, his brothers recently had their own hair shaved off so Tobias wouldn't feel so alone. They even let Tobias use the clippers.
The normality of life that was once has gone and we are only at the start of this long, difficult journey. Despite both parents working, costs of trips to the hospital and home amendments are increasingly hard to manage. Every penny donated will go towards supporting Tobias through this awful time and for his future. Tobias desperately needs things to look forward to, to keep his spirits up. He has asked to go to Centre Parcs when this is all over for a well deserved holiday. We also hope to provide Tobias with a home tutor so he can catch up with learning and rejoin his school mates once he is well.
We would like to thank you for taking the time to read this and really appreciate that you may be considering sharing or donating to this GoFundMe page. Please help us by donating and sharing this link to your Facebook timeline. It is the kindness of people like you that gives us strength to keep fighting against this.
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