A ‘lion-hearted’ nine-year-old who has fought a rare and aggressive cancer for more than a year has come home for her final “days or weeks” after a bone marrow transplant procedure failed.
Devastated mum Keisha Pile-Gray says the family have now agreed to a do not resuscitate order and she has brought her daughter home to be with her loved ones.
The mum-of-three, who lives in Garlinge, spoke of the terrible development in a heartbreaking post to her blog, Growing pains and paper planes.
Keisha said: “We were told that she is deteriorating extremely quickly and that based on her symptoms, there will likely be a sudden event. A major seizure, or stopping breathing, and that’s when you have to make the hard decisions.
“With a heavy heart we agreed to a do not resuscitate order. Although it pains me to say it, I want her to let go now. She’s fought for so long, and she’s in so much pain, I don’t want to delay the inevitable.
“I don’t want her to suffer because I’m not ready to let go, I’ll never be ready. She’s been my driving motivation since the minute she was born and this isn’t right. It doesn’t make sense. It wasn’t supposed to happen like this.”
Just over a year ago Aurora – affectionately known as Rory- was diagnosed with Burkitt’s Lymphoma – which affects blood and bone marrow – after complaining of pain in her chin and finding a lump in her neck.
In the months that followed the St Crispin’s schoolgirl underwent intensive chemotherapy and stays in Royal Marsden and Great Ormond Street hospitals.
She was declared cancer free in September, November and just last month but cruelly suffered relapses.
In January the family were told they may lose their little girl as the cancer again took its devastating toll..
A discussion with the consultant over going home from hospital and preparing for end of life care took place but ‘lion-hearted’ Rory was not ready to give up her fight against Burkitt’s Lymphoma – which affects blood and bone marrow – and her family were not ready to let go.
Aurora was declared cancer free again at the end of April.
Using trial drug Inotuzumab, and the cancer all clear, opened the way for the youngster to undergo a bone marrow transplant on May 13 – all the more vital as chemo had wiped out her immune system.
The transplant took place at the Marsden and the hope was the cells would begin to reproduce in her own body and allow her bone marrow to work as normal.
But the family were also told there was just a 10-20% chance that the transplant would achieve long lasting remission.
Sadly the transplant has not been successful,
Keisha says: “ I knew going into this that there was a 90% chance of it coming back within a year, and no matter how many people told me to be optimistic, I never was. I always erred on the side of caution because we’ve been dealt this blow time and time again.
“Every single time I think we’re getting somewhere my heart gets torn out and ripped into pieces again.
“I wanted to tell her, I wanted to be honest, but now I can’t bring myself to allow her to wake up every single day thinking it might be her last. I want her to be comfortable and happy, not weeping over something we cannot change. If I could change it I would, I’d swap places with her in a heartbeat so that she could grow up and be healthy and happy.
“I can’t believe I’m not going to watch her grow up. My baby will be forever that, and I’ll have to go on every day pretending like I’m fine but I won’t be. I know I won’t. I want to go back to when we were happy and all of my babies were healthy. I’m not just losing my daughter, my babies are losing their sister. Their big sister that they love so much isn’t going to be there to watch them grow up either.
“It’s not fair and I don’t think I’ll ever be at peace. I’ll be happy she isn’t suffering, but I’ll have to keep on going knowing that I am suffering without her.
“I want people to remember her the way they last saw her. Happy and not in pain. We will navigate through the hard times until she is at peace and we can finally grieve with everyone we love.
“I’m so sorry that everything we did wasn’t enough. I’m sorry that so many people are about to lose someone they treasure. But mostly I’m sorry that this world has been so cruel.”
Rory, who is less than three weeks from her 10th birthday, won the hearts of the Thanet community during her battle with cancer with many following the family’s progress through Keisha’s blog and also donating to a fundraiser for life-saving treatment.
People also signed up on the bone marrow register following Keisha’s inspirational campaign to highlight the desperate need for donors, especially people of mixed ethnicity.
Keisha says the community has inundated the family with condolences and offers to do anything to help make Rory’s time comfortable.
But she said Rory is now on painkillers and sedation, adding: “As a family we have made the decision to just allow her parents and siblings to be with her. Whilst there are so many people who wish to say their goodbyes to her, we want people to remember the little girl they know and loved before this returned.
“The smiley happy girl who was just getting her hair back, running around and cracking jokes.
“We want this process to be as easy as possible for her and whilst it may be difficult or upset people, there’s nobody in the world that’s hurting more about this situation than I am.”
Our thanks to Keisha for allowing us to share her words at this devastating time.