Evelyn's mum, Lisa, kindly shares their story and how even in the most difficult of times you can still have precious moments.

Around March, Evelyn had mentioned feeling some numbness and tingling in the bottom of her foot, which we didn't pay much attention to; I couldn't visibly see anything there and we didn't notice any changes in her leg.

Then one day in April our dog, who was a puppy at the time, jumped in her lap and landed on her calf in a certain way and her calf suddenly became very swollen. It seemed to happen out of nowhere, and that was what triggered us to call the urgent care clinic. Due to COVID restrictions, she wasn't seen but was advised to ice and elevate it. The swelling didn't improve, so after a few days we went to see the GP.

The whole time we thought we were treating an injury, but the injury didn't really match what happened.

A dog jumping on your lap should not cause that level of damage, and so it raised some questions for the medical practitioners. The GP didn't know what it was, and thought that it could be concerning, so we were sent to A&E. Evelyn was given an x-ray, but nothing showed up.

At the end of the week, Evelyn had an ultrasound, and the ultrasound showed a 10cm long tumour, and this was confirmed by an MRI that night. The following week she had a biopsy, which confirmed Ewing sarcoma.

Evelyn was treated at Alder Hey Children's Hospital in Liverpool, where she started fourteen cycles of chemotherapy. She was an inpatient every two weeks for either two or five days at the time, depending on the infusion. Around nine cycles in, she had radiotherapy on her leg, and at the end of chemotherapy she had surgery to remove the tumour.

The surgery was unsuccessful and she had to return for an above-the-knee amputation. One week later, Evelyn finally had lung radiotherapy, because at diagnosis they had found metastases in her lung.

Evelyn added:

During chemotherapy, I felt really sick and felt like I couldn't leave the house and I couldn't join in with my friends and what they were doing. When I went in for surgery I was worried at the time because I didn't know if they were removing the tumour or giving me an amputation. They removed the tumour, and I was quite happy about it, but a few weeks later they called and said they didn't get clear margins. This meant that I had to go back in for an amputation, and at that point I was really angry because I was healing and ready to move on with my life.

When we got Evelyn's diagnosis, obviously our world changed. We did not know what to look forward to, what our day-to-day would look like, and we felt like life as we knew it was over.

I wish we had known at the time that we would still have so many joyful moments together.

I feel like this is what has kept me going, kept us all going. It helped our family with moving on from the devastation. Nothing can take away those feelings, but it helped us understand that we still have the chance to really make the most of every single day.

We don't have control over the treatments, and we don't have control over how you're going to respond to or feel with those treatments, but we can do the best for each other.

Ironically, I think some of our best memories together were in the hospital by ourselves. We didn't really have interaction with anybody else for a week, and those are precious moments, even though we certainly would never have chosen to be there.

I know from Evelyn's perspective that she wants people to have a bit more understanding of what she's going through and what those challenges are, and I think I feel similarly.

It isn't ever really over and I think the people around us that love us, they're so eager to see us back to normal. They want to get back to feeling comfortable around us, and not having to face the worry and the fear that I felt.

People need to understand that our lives have been changed in a lot of ways and we're not going to go back to how we were, and who we were, before Evelyn's diagnosis.

The Support & Information Team at the Bone Cancer Research Trust have supported us immensely. They supported both Evelyn and her sister through the Virtual Story Time sessions, sending books for them which Evelyn had when she was in hospital.

I also attend the Virtual Cuppa which has been great for me, especially when we've had medical questions. We don't really have access to our consultants, and the Support & Information Team have helped us find those answers and put us in touch with people.

Even though this is a rare cancer, early detection is so important, and having awareness amongst the public and medical community is vital to improving outcomes.

When we got our diagnosis, there was a lot of information thrown at us at once, and we hadn't even heard of bone cancer before. But we were given information and pamphlets designed by the Bone Cancer Research Trust, which allowed us to come back to this in our own time.

In the video below, Lisa and Evelyn tell us more about their journey:

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