This page is to raise funds to support Reuben’s friend Ethan and his family. Like Reuben, Ethan is 4 and has twin brothers, Ronan and Harvey who are both 1.

Diagnosis

In summer last year, Ethan began complaining of a sore arm. After undergoing numerous invasive tests, his Mum and Dad (Kimberley and Fraser) received the heartbreaking news that Ethan has a rare and very aggressive form of cancer called Desmoplastic Small Round Cell Tumour. While the primary tumour is in his shoulder, the hospital also identified a secondary site in his lungs.

Treatment

The only option was for Ethan to immediately undergo an aggressive 14 cycle chemotherapy plan, followed by proton radiation treatment. When the gruelling chemo eventually comes to an end, the whole family will need to relocate to Manchester for 6-8 weeks for Ethan to endure radiation treatment. Manchester is the only place in the UK with a proton machine.

Side effects

I had no idea the extent of the effects of chemo, particularly on a child, until Ethan was diagnosed with this horrible illness. Most weeks for Ethan and his family now involve at least one stay in hospital for treatment of febrile neutropenia (brought on by the chemotherapy) or for the chemo itself. His little body is exhausted and thin. He struggles to eat and most of the time has little energy. His immune system is weakened so he is often sick, spiking a temperature or picking up infections. He should be doing all of the things other little boys his age are doing - going to birthday parties, softplay and nursery. But most of the time he is too sick, or too exhausted or the risk of infection is just too high. As all his friends prepare for starting school, Ethan is preparing to start gruelling radiation treatment to save his life.

The cost of caring

Kimberley and Fraser are now essentially Ethan’s full time carers - taking care of his medical needs, learning how to administer his medication at home, staying with him in hospital when he becomes too poorly, feeding him, dressing him, monitoring his health, making sure he doesn’t detach his tubes when he plays. I once watched Kimberley make Ethan four different meals one after the other in the hope he might be able to stomach any of them. Each time he asked for food, but by the time that it was served he was unable to eat it.

Kimberley and Fraser juggle Ethan’s needs with looking after the twins, who still need the same care and attention as any other one year olds. They’ve also been continuing to work when they are able to. However, it is impossible for either of them to work full time, and that is now having a huge financial impact.

Manchester

To add to the financial strain, the whole family will now have to relocate to Manchester so Ethan can receive life saving radiation treatment.

Whilst some of the relocation expenses are covered, a huge chunk are not. The family will now have duplicate costs as they cover household bills in both Manchester and Edinburgh. They will also have to cover fuel, hospital parking costs, accommodation (this is partially funded but there is a large shortfall) and food (the cost of which is increased as they don’t have the storage space to do large shops or batch cook). They are also limited in what they can carry with them and will likely need to buy toys, clothes etc. when they are there. The children will be away from their friends and their home comforts and the area they are staying in is not particularly family orientated and so budget will be needed for activities/excursions to keep them occupied. The cost of heating and feeding Ethan is also increased as he has little body fat to keep him warm and the constant nausea means he may need to be offered several meals just to get him to eat something.

There is a common misconception that funding for cancer patients is plentiful, but in reality it is limited. With support and guidance from Jak’s Den and Love Oliver the family have explored and obtained all benefits and funding available, but there is still a significant shortfall. They estimate that as of the end of April, they will no longer have the funds to continue to meet their household bills and the additional, unfunded expenses of treating Ethan in Manchester will be in the region of £6k (which is conservative).

No family should have the additional worry of not being able to pay the bills when they are fighting to keep their child alive. Ethan is smashing through his treatment and his last MRI showed that the tumour had shrunk a massive 90% since first diagnosis. He is doing amazingly well, but there is a long and uncertain journey ahead for the family.

How we can help

We are hoping to raise £6,000 to help the family cover the cost of Manchester. A number of Ethan’s friends and family are running their own fundraisers and sponsored events. For ease, it would be helpful if any donations to those can be made via this page so there is a central collection point. Any donations made on this page will be paid directly to the family.

In the event that donations exceed £6k, the extra will be used for the family to throw Ethan a little celebration for his 5th birthday in April or to put towards a break away at the end of a harrowing year of treatment.

Anything you are able to give, however small, would be gratefully received. We know times are hard at the moment so if you are unable to donate, please do consider sharing the page to raise awareness.

Thank you in advance for your kindness.

With love.

Vicky x