Marlene Stals
You always think it can never happen to you… Until it does. A sunny Friday morning in January 2017, an almost 8-year-old girl jumping on a trampoline, getting ready to leave for hospital for routine adenoid removal. Fast forward to 12 hours later, the same little girl lying hooked up to machines, blood and platelet transfusions and a bone marrow biopsy booked for first thing Saturday morning. This is our story in Hayleigh’s journey with Fanconi Anaemia.
On the 27th of January 2017 - a day that will forever be etched in our memories - we have the “last photo before she got sick”, we remember this last memory “before she got sick”… We remember the awful words sitting outside theatre on the cold steel chairs, when the nurses came to ask if there’s any history of bleeding disorders in the family. The sinking, helpless feeling. Watching the lab technicians hurry out of the theatre with vials of blood in a plastic bag marked “URGENT” knowing in your gut that it’s your child’s and that something is horribly wrong. Being called in to the theatre room to be with her, to calm her, you could feel the frantic nerves of the nurses and staff and knew that something had transpired in the moments before we were called in. Being taken back to her ward, knowing that your child wasn’t getting the jelly and ice cream that other kids were having, but that she was being transferred to the main hospital via ambulance. You can’t help but feel angry. Not yet knowing what’s wrong. What’s happening. That same evening the on-duty paediatrician told us they’ve been in touch with Red Cross Children’s Hospital, and the Oncology department. Two places you never want to hear in the same sentence… By the Monday, after our usual paediatrician was back on rounds, and after a battering of blood tests and scans, we had a provisional diagnosis of FA. First time we had ever heard about it. And what’s the first thing you do… Google! The worst thing we could have done. We later received the best advice we could have, DON’T EVER GOOGLE.
Our FA journey had started… she would need a stem cell transplant. More bloods were drawn for testing and tissue typing. Her then 2-year-old sister had to be tested for FA, and for a potential match. And so, the longest wait of our whole journey started. 6 weeks before we received the “official” diagnosis of what we already knew. Hayleigh has FA. And then the wait for a match and get to transplant. The anger, the sadness, the questions of why, what have we done that God needs to punish our child like this? It’s not fair! Will she be ok? What happens now? Where do we get the money from to get her the care she needs? The questions were endless…..the tears didn’t stop.
They say that co-incidence happens when God chooses to remain anonymous. This is something we firmly believe, and faith is not everyone’s “cup of tea”, but the one thing we learnt during the darkest moments of transplant and isolation rooms, is that when your child is hanging on for dear life, you hang on to your faith, whatever faith means to you. The FA and transplant journey is a wild rollercoaster ride. The unknown, the what ifs. We were so blessed with an amazing medical team, from our local doctor to the transplant team, the post-transplant team and back to our local doctor, who still looks after Hayleigh. You learn who is there for you in the hours of need. Strangers become friends. People forget. You lose your identity as a parent. You learn that it’s ok to cry with your child. You learn that your child will teach you to see the world through their eyes. You learn to be vulnerable. And most importantly, you learn that its okay to not be okay. Your child loses their identity. They become known as the “sick kid”. You forever have the “before she got sick” period. But weirdly, once you find out that they’re diagnosed with FA, so much makes sense.
In those moments of overwhelming tears and feelings, you need to learn to take a time out. You need to learn that despite your world falling apart, your child needs you. So many people will “admire your strength” but you know deep down its not strength, its fight or flight, being on standby for hospital admissions, panicking for every bump, lump, spot, cough or sickness that comes and that becomes normal for a while. People will tell you “kids are resilient” …. I remember after about the 10th time of someone saying this to me, my anger got the better of me. They shouldn’t have to be resilient….they shouldn’t have to be going through this hell in the first place. But people don’t understand, unless they’ve been in your shoes and that’s okay.
But it gets better….from living blood test to blood test, the days turn into weeks, weeks into months, months into years, and life returns back to a new version of “after she got sick”. You learn to research, to know what’s good and bad for your child. To be there for others starting out in their journey. You learn to treasure every single small moment, every achievement, every Christmas and New Year, every birthday, every re-birthday. FA teaches you to slow down….to take it all in, to embrace life. To roll with the punches. To be ready for anything that this disease throws at you. And you learn that in the midst of chaos, you will be okay.
We look back and admire the strength of our child. We look at the children in the FA community and are in awe of them. Their stories, their characters and the way they embrace life. And we look at our beautiful imperfectly perfect daughter, and that despite it all, we wouldn’t have changed her for anything in the world.