May 7th 2014 was the day my daughter Ally celebrated her 21st birthday. She was the poster child for health & happiness. Ally was in a career she loved, working as an apprentice hairdresser. She worked out & ate well. She had energy to burn & a zest for life that rubbed off on all of us who were lucky enough to be near her. Ally was the 2nd of my 5 children. She was in a committed relationship with Stephen, and we knew she had found the love of her life. The day we celebrated her 21st birthday, she was simply glowing with health & happiness.
In early July, Ally started having some abdominal pain & some small PR bleeds. As a nurse, she would text me or call & ask for advice. I remember the day she came into the clinic I worked out, we joked about her “broken” body, she had some blood tests & booked in to see a gastroenterologist the next month, her blood tests were clear, there was nothing that indicated urgency.
Over the next few weeks Ally called me a few times saying she didn’t feel right, and she wondered if she was having a recurrence of Glandular Fever. She’d had it when she was 16. She was tired & in her Ally-way, she would laugh & say “mummy, I think I’m broken”. Ally had always been prone to odd things – a car ran over her foot on her 20th birthday, she had her tonsils removed twice after they grew back, she had an ovarian cyst burst. But she always bounced back. We would laugh at her oddities & she’d say “that’s just what Allyboo’s do!”
By early August, Ally was getting headaches & felt “achy”. She saw her GP & based on some slight deviation to her liver function tests,he referred he to hospital for investigations. She was given a lumbar puncture, but sent home with clear results. The headaches got worse. Her temps started rising. She was asked back to the hospital due to doctors being concerned that they had caused a problem with the LP. Blood tests were clear, every viral screen was done, she felt like she was a pincushion with how many tests she was put through, but her temperatures climbed & she remained febrile. She was in & out of hospital for a few weeks with an undiagnosed febrile illness. Again she was sent home & told to keep up the panadol & fluids.On the 21st August Ally looked grey. We got her back to hospital & again, drew blanks with the doctors who could not find any cause for her temps not subsiding under 39. A bone marrow biopsy was done.
Ally ended up in ICU, still with a “febrile illness under investigation”. There was a line of thought that it may be related to an autoimmune disease, as 2 of her siblings, and an uncle are Type 1 Diabetic. Autoimmune was eventually ruled out. On the 3rd of September I received a phonecall from Ally. I was at work. She was in tears & begged me to come straight away. That day we were told that Ally had Haemophagycytic Lymphohistiocytosis. HLH. A rare & life threatening blood disorder. Not cancer, but the only treatment was chemotherapy. Her siblings needed to be tested immediately for tissue type to see if they could be possible bone marrow donors.
We had never heard of HLH. Most of the doctors had never heard of HLH! The Haematology department took over Ally’s care & for 2 weeks she had massive doses of steroids & chemo. It only took 2 weeks for the doctors to tell us not only had chemo failed to stop the HLH, but that our other 4 children were not matches for donation of marrow. We were crushed. Ally was devastated. They started searching databases for tissue matching. The doctors wanted to try one last drug which they called the sledgehammer approach to get her to the point of being able to transplant, a last ditch shot in the dark when chemo fails. We could see we were losing her. The disease progressed so rapidly it was shocking. She had 2 stays in Intensive Care before her final visit there. Her lungs were affected, she was haemorrhaging. By the 26th of September we were told Ally wouldn’t make it through the night. 23 days after diagnosis. What kind of illness destroys a body that fast??!! Telling our children to come & say goodbye to their sister was beyond heartbreaking. Ally slept a lot but had some final moments of love, humour, dry wit & joy with us all.
She didn’t stop fighting for a second. Our darling girl fought until 5.20 am Monday the 29th of September 2014. She was surrounded by her siblings, her fiance, her parents, her grandparents & Stephen’s family. The most beautiful light in our lives was taken from us by this insidious, aggressive disease that is still so rare, we have doctors saying they had to google it to find out what it was. 9 weeks from healthy to gone.
This disease is real. It is fast. It is relentless. It was not genetic. It just happened. HLH didn’t just take my daughter. It hurt every one of my children. Diseases like these are mostly unknown, please help spread the word. If you know someone with unrelenting high temperatures, have the doctors screen for HLH. Early diagnosis is the only way to beat it. Sometimes “panadol & keeping up the fluids” is not enough. I knew there was something not right, and I will never know if I could have done more to “push”. One nurse gently warned me to be careful or I might look like a parent with Munchausen’s by Proxy. I will never know if that held me back from being stronger as my daughters voice. Sometimes a patient that is tired & has a temperature isn’t a “dying swan”, as some nurses have been heard to say. Sometimes that patient is dying. HLH is deadly.
Please remember my daughter. Alexandra Rebecca Green. Ally. 7/5/1993 – 29/9/2014