Oliver’s Cancer Fight- Help get him to Disney

Thank you for looking at Oliver’s fundraising page to help fundraise for a trip of a lifetime to Disney World, Florida. Any donation, no matter how small will help and we thank you from the bottom of our hearts.

Oliver, now 4 has been undergoing chemotherapy treatment for 2 years and was ill for 6-12 months before that for a rare white blood cell cancer (Langerhans Cell Histiocytosis). Oliver also suffers from DI and adrenal insufficiency, due to his pituitary gland not producing the hormones as they should.

As parents we have had to reduce our working hours and income to support Oliver with his frequent long distance hospital trips, emergency trips for temperatures and illnesses, and to aid with calculating his medication when Oliver is at nursery, both Nippers and Larksfoot have been amazing at supporting him, especially Nippers who supported us initially as a family during his diagnosis.

Although finishing chemo treatment in April 2024 is a small positive milestone, it will continue to be a lifelong battle for Oliver and us. We hope to celebrate this milestone with an end of treatment fundraiser / party. Keep an eye out for further details.

Oliver is an absolute trooper he takes everything in his stride, taking all medicines, playing games, and always sharing a smile to make others smile too. If you have the time, please read further down for more about Oliver’s story and share it far and wide, it may help another parent to trust their instincts and push for answers or highlight the symptoms of these rare conditions to another doctor.

We know that sometimes cancer can be a taboo subject but please don’t hesitate to talk to us about it, it does help! Sometimes we just struggle to bring it into conversation initially.

Oliver’s Story

Oliver was born in September 2019, in May 2020 a small blister started to appear on his scalp, this followed with multiple trips and calls to the doctors. Our progress was hindered by the Covid 19 pandemic.

In 2021 the blister was growing to the size of a 50 pence piece and regularly caused Oliver pain and discomfort, often bursting with the slightest knock to his head. After many trips over 6 months, to the dermatologists, using many topical creams that turned Oliver’s whole scalp into scabs and many desperate phone calls to try and progress the treatment, he was finally booked for a biopsy in 2022. During that time Oliver’s health declined quite rapidly and Christmas 2021 was not a happy one, with Oliver frequently vomiting, unable to eat, drinking 3x times as much fluid as would be normal and with no time or desire to have hugs or play with mummy or daddy. He quickly grew guant, had no attention span other than for drinks and was constantly tired. The best description was that he was like a zombie! We had to limit him to drinking 3.5 litres a day. We later learnt that unrestricted he could have drank over 6 litres a day.

Having chased the results of the biopsy for 5 weeks in April 2022, at 2 years old he was finally diagnosed with a rare cancer condition called Langerhans Cell Histiocytosis (LCH). It had affected his scalp, and the delay of diagnosis meant it also damaged his pituitary gland causing diabetes insipidus (DI).

Things happen so fast when there’s a cancer diagnosis and our world turned upside down overnight with a long stay at Manchester Hospital for tests, followed by an operation to have his port fitted, in order to start his chemotherapy and steroid routine. The first intensive round of chemotherapy worked but not sufficiently enough, so he had to endure another 6-week course.

During this second intensive round of chemo, his hair fell out and he grew chubby due to the large quantities of food he now ate, due to the steroids. (Still wouldn’t eat many vegetables though!) They say ‘hair is just hair’ but it’s more what it stood for and it falling out finally dawned on us that the cancer journey was real.

Oliver also began to receive medication to gain control of his excessive weeing and thirst and almost instantly it gave us our happy, smiley, inquisitive, loving boy back. He had time to play, he gained weight and most importantly he had time for mummy hugs.

During the two years there have been many extra unexpected trips to hospitals for temperature spikes, fevers, contact with children with chicken pox and blood transfusions but thankfully with the lovely hospital staff Oliver loves these longer stays at hospital when he gets 1:1 time with mummy or daddy and gets to play with the nurses and staff.

Both the nursery’s Oliver attends have been amazing in supporting him with his emotional and medical needs throughout. He has definitely shared extra hugs and extra 1:1 time when feeling tired or struggling with the effects of the steroid’s. Knowing he has this extra support meant we could go to work more regularly knowing he could rest if required.

We are now in the final sessions to complete the 2-year treatment plan. Oliver has been doing maintenance chemo and steroids every 3 weeks for the most part of that time. He has been amazing throughout with minimal fuss and no crying on each visit and although he literally knows no different he is our brave, courageous, little superhero who tackles each challenge head on. He rarely complains about taking the multiple medicines he has to take several times a day; he even puts up with the yucky ones.

Oliver has grown up to be a confident, clever, little boy who has a love for vehicles and being outdoors, usually seen riding around on his peddle bike splashing through puddles and mud!

We don’t know what the future will hold, LCH is very treatable if it’s caught early on, but the complications still remain. He will still require further scans under sedation, operations under general anaesthetic and ongoing testing for his cognitive issues, which are linked to LCH. We hope that by finishing the steroids we will gain some control of his Diabetes Insipidus. LCH does has a very high return rate in multi system cases such as Oliver’s, so we will be constantly on edge through the rest of his life.

April 2024, we start our new chapter in life of watching, waiting and hoping the cancer doesn’t return.

Any donations will be used to help fund travel insurance, plane travel, accommodation and the expected donation required for the amazing American charity called Give Kids The World, organised by an amazing UK charity called Kids Cancer Charity. This holiday will create a great respite opportunity for us enjoy time together as a family, away from the lengthy stays Oliver's had in hospitals or unwell, where we've had to be apart.

Thank you for reading.