What it is like to be the parent of a VHL sufferer.
We are the parents of VHL warrior Kayleigh Stephens. When Kayleigh asked me if I wanted to share our side of living with VHL I was unsure what to even say, from a parents perspective. But after some time of thinking what to say here is our story.
I’m going to start this off with we had never heard or even knew about VHL, didn’t even know it existed. So when Kayleigh was diagnosed with VHL, we were shocked! We were worried and very confused. What was it? How is it going to affect her?
The impact of VHL on our lives has been enormous. I remember walking into the consultants room on one of Kay’s regular check ups with her neuro consultant and hearing the tumour has to be removed within two weeks as it was paralysing her was incredibly shocking and painful to hear. To be told “if we leave it, it will slowly kill her” wasn’t something I ever want to hear again. It was heartbreaking, so upsetting. I was stressed about it but still in shock, I was so worried, my anxiety couldn’t handle it. I felt like all emotions hit you at once.
The very first surgery Kay had at the very beginning wasn’t as bad however the worry and anxiety you feel as a parent doesn’t ever leave you. Her recovery wasn’t as bad however, the tumour was still there. It hadn’t been removed because it was surrounded by blood vessels and they couldn’t touch it. They said they needed to investigate it. Which led to the diagnosis of VHL.
There were times we had family days out, like the zoo or theme parks, and we took a manual wheelchair with us for Kay just in case. Kay was getting weaker and got tired fast. She couldn’t manage walking all the way round so the wheelchair was needed. I’m glad we always took it but always felt sorry for Kay as she was uncomfortable in the chair, people staring at her making comments judging her before knowing the reason why like in McDonald’s Kay uses the disabled toilets. She walked up to a worker to open the toilet and the lady said “there’s nothing wrong with you” I went absolutely mad, how dare they assume. The judgement from people got to Kay so much that she made a T.shirt “I have tumours in my body” just so she didn’t have to repeat herself or explain. I always felt so sorry for Kay because I know the distress she has gone through because I feel the same. This is my child! I never asked for this and certainly doesn’t deserve to be treated unfairly.
I sit there all the time and think I would gladly swap roles with her. I’ll take her pain and the uncomfortableness away. What has VHL done to her? The second surgery was much more intense although the tumour was removed, however the expectations weren’t met. What I mean by this, the consultation didn’t explain everything fully to us, it was very much “it’s got to come out” . There was no explanation of pros/cons. Nothing was told of any possibilities of what could be. In all honesty, did they even know? We got told she may have to go rehab to learn to walk – that was all. I was left with my baby in tears and in pain. I felt utterly helpless because there was nothing I could do. I had to witness my daughter learn all over again.
We joke so much about VHL and Kay having a spinal cord injury, it’s light humour, because if we didn’t we would cry. To watch your adult child have to try and feed herself again like a baby, rely on nurses for sips of water. I felt awful, I was in shock and in utter disbelief. The worry, the stress, the anxiety it’s all you feel 24/7 and it never shuts off. I remember we went to visit Kay in hospital one day and got told she was in a adult nappy because she kept peeing herself and needed to keep the catheter for the foreseeable future as she will have to relearn to go to the toilet because her bladder was affected by the spinal surgery and not working. I remember standing there listening to the nurse say but it all felt like it was something out of a film, it didn’t feel like reality.
Kay got transferred to Stanmore for rehab and spent the next 3 months in the London Spinal Cord Injury Centre where she had full time nurse care and physiotherapy that specialises in spinal injuries. Rehab was very long but she needed it, not only for her daughter but for herself too. We spoke everyday. We cried together, we laughed together every pain she felt, I felt.
I’ve never felt anger throughout all of this, always just dealt with whatever life threw at us. We just digest it and face it head on. I think it’s more of a question of how? Why?
Kay made the decision to get her daughter tested for the VHL gene. Unfortunately it came back positive. My heart sank, that was a punch to the gut. Because I felt more protective of my girls than ever.
My baby girl is amazing, strong and inspiring to so many. I’m so proud to be her mum! With witnessing how much Kay has achieved so far she settles my fear because I can see her growth shining, nothing ever keeps her down. Don’t get me wrong I do still worry if I can’t get hold of her, if she doesn’t answer my call I feel panicky, has she fallen? Is she stuck somewhere? Has her wheelchair broken? But then when she calls I feel relieved, at the end of the day I’m still her mother and naturally will worry if i can’t get in contact.
I know her daughter will be like her mummy because Kay has shown her strength and independence and I know we can do it. I am so happy with her progress, she has come a long way and a lot further than the consultant anticipated. I feel like going yes you show them girl! #vhlawareness
