Toby’s Leukaemia Fundraiser

Hi everyone with Nikki & Ollie's permission we have started this Go Fund Me page to raise money to help the whole family during this difficult time.

Some of the ways your donation is going to help the family will be:

Nobody ever thinks that they'll find themselves in such a situation as this so we wanted to rally together and show our love and support wherever we can.

Whatever you can give will really make a huge difference, no matter how small. Together we can help.

This is how it all started. On New Years Eve Toby had a positive PCR test and developed symptoms of covid that day. After he had completed his isolation and had got rid of covid he never seemed to get better.

For the following few weeks he was displaying these symptoms:

- fatigue

- pale in colour

- feeling the cold more

- lips turning blue when chilly

- temperatures

- off his food

- lack of interest in normal activities

- bruises for no reason

- knee pain and refusal to walk

- lack of comprehension at times

- unusually bad temper

- falling asleep easily on strange places

- just generally not himself

As we were worried he wasn’t recovering we took him to the GP a couple of times, spoke with 111 a couple of times and had a trip to Lydney Urgent Care Centre.

On Wednesday 2nd February he was sent home from nursery with a temperature and he was even more out of sorts.

On Thursday 3rd February he was feeling really tired and hot.

On Friday 4th February he refused to get up because he was too tired, he also had a temperature. I kept checking on him throughout the day and waking him up to talk to me. At lunchtime I noticed he had a what appeared a meningitis type rash that didn’t fade when I did the glass test. I took him straight to Gloucester a&e.

At Gloucester a&e he was treated with salbutamol and sent up to the paediatric assessment unit. In PAU I explained all the symptoms he had been displaying over the last few weeks. Ollie and I were convinced he had long covid. The senior dr was concerned about these symptoms and performed a through physical exam, he sent Toby for and x-ray and ordered extensive blood tests. Toby was then moved to a bay while we waited for the results to come back.

At about 9:30pm a dr and 2 nurses came to talk to me. This is when they told me that all the signs were pointing to leukaemia and that as soon as I was ready Toby was being moved to the children’s oncology ward.

Gloucester immediately got in touch with Bristol Children’s Hospital and both hospitals have been brilliant. Over that weekend Toby received a red blood cell transfusion and a platelet transfusion, IV antibiotics and fluids. On Sunday 6th February he was transferred to Bristol Children’s Hospital.

On Monday 7th February he had a small operation to get a bone marrow sample so that it could be tested to confirm exactly what type of leukaemia he has so they know which drug cocktail to start him on.

On Tuesday 8th February it was confirmed that he has Acute Lymphoblastic Leukaemia (ALL). If you’re going to get leukaemia then this is the one you want as it’s the most common.

On Wednesday 9th February Toby will be having another operation. During this one he will have a lumbar puncture, have a Cathaport fitted (this is a central line which means he won’t need to keep having cannulas and will have more freedom of movement) and he will be starting his chemotherapy.

All the consultants are really positive and are all talking about when he’s a teenager and an adult and how long he’ll need to have check ups to make sure it doesn’t come back so we’re feeling really positive.

He’ll spend approximately the first 2 weeks here in Bristol and then he’ll be able to come home.

His treatment will be quite intense for the first 6 months but the majority of it will be done as day trips to hospital. After that he’ll continue receiving treatment for approximately another 18 months and then he should be fit and well again.

Thank you from the bottom of our hearts.