Family story

Nevah

Nevah

It took us a while to settle into our new life that revolved around the brutal chemo regime…

In January 2023, Nevah started being hampered with fatigue, pain in her pelvis and subsequent pain in her legs. The last thing you think of is cancer and as parents, we put it down to growing pains. Trips to the doctors didn’t then alter our view of that and the symptoms were put down to a possible sporting injury that we weren’t aware of happening. Progressively, over the coming months fatigue started to impact her day to day activities more significantly and the pain in her pelvis became visible as a swollen lump. A trip to Dorchester A&E saw us being 5mins away from being sent home with constipation medication, but due to the concerned look on our faces, the Doctor decided to send us to the ward for an xray and further investigation. It became very clear when Dorchester hospital were liaising with Southampton Paediatric Oncology unit, we were suspecting the worst. Nevah became very unwell at a rapid rate and a formal diagnosis couldn’t come quick enough. The Southampton histopathology team worked tirelessly to get Nevah’s diagnosis to start immediate treatment. Nevah was diagnosed with Metastatic Ewing Sarcoma on the 25th May 2023. It is a type of bone cancer, originating from her pelvis and surrounding soft tissue and had travelled to her lungs.

It took us a while to settle into our new life that revolved around the brutal chemo regime.  We soon had a visit from one of the amazing Abby’s Heroes Family Support Workers who just popped their head in to say hello and explain what they did.  Their presence on Piam Brown is such a HUGE positive on what is otherwise a very depressing place to spend days on end in.  From lollies in the freezer, snacks in the cupboard and good quality ready meals in the fridge, it meant that Nevah had a much better variety to satisfy her constantly changing taste buds.  Hospital food was not her favourite so to have these other options being supplied was brilliant.  Then on top of that, Abby’s Heroes would bring round a lovely lunch on a Wednesday and then they would order in Dominoes pizza for everyone on a Friday night! They have provided us financial support, helping with the cost of staying in London for 6 weeks for Proton Therapy treatment and theatre tickets, but it’s the little things such as the things above when you are really low whilst on the ward that made such a difference to us.  I think the best way to explain it is that we never looked forward to going into Piam Brown for the next round of chemo but Abby’s Heroes at least gave us something to look forward to.  Just having the Family Support Workers there to talk to as well is a huge thing and they were so full of knowledge about the ward etc, they became a valuable source of information and were always there to lend an ear or a shoulder to cry on.

Nevah finished her 14 rounds of chemotherapy, 30 fractions of proton beam therapy to her pelvis, 10 fractions of photon radiotherapy to her full lungs and multiple visits/long stays in 4 different hospitals, Nevah finished her treatment in March this year.  Abby’s Heroes have  remained in contact and we still feel like they are there for us if we need them.  Thank you to everyone and Abby’s Heroes!

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