Ally vs. HLH

Ali green 2

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

18 Comments
  1. Hi
    I just wanted to reach out to you. I feel your pain know your sorrow like its my own. I’m in the UK, my son Richard lost his life in June 2014, he was just 22. Your story is so achingly similar, from first onset of illness (fever, tiredness) till he passed away was 6 hell ridden weeks. So like your daughter, full of life a zest for living, but equally prone to “odd” things. He had a CMV infection as a baby which they now think may have been HLH and this EBV led HLH was a relapse. Who will ever know?? All I do know is as their mums this pain is unrelenting, and as you say the far reaching effects to all our families and friends. Please contact me if you want to, I’m on face book or by email.
    My heart is with you
    Joanne xxx

    • Hi there so sorry for ur loss, I to am in uk Northern Ireland to be exact and my sister passed away from HLH 5 weeks ago she had only been sick a mth and this killer disease ravaged her body. We were lucky to get a diagnosis lucky that the haematologist had seen one case before eight years ago treatment started as per 2004 protocol but sadly she didn’t respond to steroids or chemo and went into organ failure in ice she died 17 days after being admitted to hospital

  2. Hello from Austin, Texas. We lost our 21 year old son Josh on Thanksgiving Day, 2008 and in similar circumstances. His illness and passing were also sudden and totally unexpected, so we can relate somewhat to your loss and the impact of Ally’s passing on you and your family. We also had no idea these rare but deadly diseases existed, or the devastating impact they can have on a young, healthy person’s body. Thanks for sharing her story.

  3. Rest in peace Ally

  4. I’m so sorry for your loss, so sad. R I P Ally. Words fail me.

  5. Karen this is so well written, you are so very brave to be able to write this dear girl. We are so immensely sorry for your loss. Our thoughts are with you all! Such a beautiful angel, such a huge loss for you all. Xxxx

  6. Hi Kate,
    There are no words for how I feel reading your story and what Ally, you and your family have been through. Surviving HLH comes with the burden of knowing Ally did not.
    You are more aware than I’ll ever be of what my husband Rex and children Rebekah, Ben and Karenzah have been through watching me fight to stay with them whilst all my vital organs were shutting down. Nothing prepares you for that.
    I’m regularly in Moana visiting Rebekah and we would love to meet you. Whatever I can do to help raise awareness for HLH let me know.
    Often think of you.
    Anne

  7. my heart goes out to you all. May you be surrounded by the LOVE that is all pervading. May your hearts, minds and beings be comforted and healed as you work your way through the anguish. May the still small voice guide you and may you be held in the All Loving Presence of The Beloved.

  8. Ally … loved forever and never forgotten. I hope her story helps another young person and their family. You are an amazing mother Kate Green.

    xx

  9. Ally’s story has effected many people in so many ways she was a beautiful girl from a loving and caring family. I had never heard of HLH before Ally and I work in the health care industry. Since Ally left us I have been donating blood this is my small way of doing what I can to help other people in similar situations and is my way of saying that Ally will be missed.

  10. My heart goes out to this poor girl.. I knew of her. What her family, friends must have gone through. Life is so precious here one minute gone the next. I have two beautiful daughters 21 and 18… All I can say is how sorry I am… Bless you all xxx

  11. Hi Karen,

    This is such a beautiful tribute that you have done for your daughter, may she rest in peace such a sad story no mother or family should ever have to tell. Your strength to tell her story and bring more awarness to this horrible disease and other rare diseases is so admirable. I work in a Doctors surgery in the southern area and have printed Allys story out put in the staff room as a tribute to her and bring the gps attention to this and other rare diseases and that they are out and can strike at any time to any patient no matter how healthy. My deepest condolences to you and all your family and may Ally rest in peace xxxx

  12. My niece and her partner lost their beautiful 7 month old baby girl to HLH in August 2014. It was very quick also. As a result their 2 1/2 year old son was diagnosed with the same disease and has had to fight for his life. He has had the chemo and a bone marrow transplant. Soon after the transplant he ended up in ICU with a hemorrhage in his lungs. Once again we nearly lost him. However he is a little super hero and is recovering to everyone’s amazement. He is one of a kind. It’s been extremely traumatizing for the whole family and So difficult for my niece and her partner as they have not only been grieving for the loss of their baby girl but have had to go through so much with their son. And it’s not over. Please read “Haiden and HLH” on this site. All the best to your family and Rest in Peace Ally. xx

  13. Sending our condolences from Woodcraft, South Australia xx
    After losing 3 loved ones over the last three years it is often hard to understand why they have to leave us. We can only find comfort in the time they spent with us and the wonderful memories they leave with us even though it’s so hard to push through the sadness. I have a 15 year old son who still to this day struggles with the death of his 25 year old uncle only just over a year ago, as he looked up to him and loved him like a brother. Although my brother in law did not die because of a rare disease the pain, loss and grief we his family feel is still so hard to deal with. We can only imagine what you and your family are going through, but know that your daughter will not be forgotten and her story shared with the world. A hard truth of losing our loved ones is the family and friends left behind to deal with the grief…just remember that there is help, there is support and there is hope beyond the suffering. You as parents must feel so lost at times, but also caring for your 4 remaining children must also be so hard when you are all grieving together…at least that’s how we feel at times. We have found strength in each other, from others around us, from health professionals, from support groups and even others that have experienced a loss such as ours. Stay strong together, seek help from others, continue to live a beautiful life with your 4 children incorporating the memory of Ally and know that by sharing your daughters story she will always be remembered. You are not alone. You are all in our thoughts and prayers. And please don’t hesitate to contact me if I can do anything further to help you share your daughters story, raise awareness of HLH and help Allys memory live on.

  14. One of the most tragic stories I have ever read. It must of taken so much courage to share that with everyone and
    thank you for sharing your heartfelt story.
    Ally will be remembered as a truly beautiful girl.
    God Bless you all.

  15. Our dear cousin passed away last week on 1/10/2015 from HLH… just devastating!! More awareness needs to be raised for this cruel disease… love and light to you all ♡♡♡

  16. Kate I am so sorry for you and your families tragic loss. I was in tears reading this. We went to uni together and I remember thinking that you are such a brilliant mother. I don’t know what else to say other than I’m sorry. No mother, father, sister, brother, fiancee, friend, should ever have to go through something like this. Big hugs xx

  17. Thank you all for your kindness & comments. HLH continues to rip families apart, but we are trying to raise awareness for early diagnosis. Life isn’t the same without Ally. She is missed & mourned & remembered & loved & celebrated every day.
    Please also read Bianca’s story on this site, another beautiful angel that HLH took.
    xox