In 2008, in St. Jude Children’s Research Hospital in Memphis,Tennessee, a 15 month old little boy called Dax was diagnosed with AML M7 leukemia. After the chemotherapy treatments failed to bring his leukaemia under control, Dax was enrolled in an experimental protocol to undergo a stem cell transplant.
Dax received his first transplant from his mother, Julie’s stem cells. However, the cancer soon returned with a vengeance in Dax’s small body. Again, St. Jude offered another transplant, but unfortunately Dax’s little body just couldn’t beat the disease and he returned home to Washington with his parents in mid-October 2009 to “Cherish Every Moment”.
The doctors thought Dax probably would not live through Christmas. At home with Dax, Julie decided to celebrate one last Christmas with her son. Dax especially loved the Christmas lights on the tree and on the house. Soon the neighborhood began asking why they had Christmas lights up before Halloween? As the story spread, within days the neighborhood and soon the town of Washington was lit up for Dax.
Dax did live to see Christmas day. He passed away on December 30th, 2009.
Singer and songwriter, Matthew West reached out to help after hearing Dax’s story. He wrote a song called One Last Christmas and the song went viral in 2011. I heard about it and thought that it was both very beautiful and very emotional! I shared it on my Facebook page on the 9th December 2011 with the caption “Have the tissues ready.”
We didn’t need tissues in our family during Christmas 2011, but 2012 was a difficult year for many reasons. In September 2012 we were all devastated when a very close friend of my eldest daughter Rachel took his own life. Rachel was contacted by the person who found him. Rachel immediately phoned me at work. When I had composed myself enough to drive, I collected both Rachel and Leah and we went to this young man’s family home. It was heart-breaking.
On Christmas morning 2012 our youngest child’s pet hamster died, having been attacked by one of our house cats. Miriam loved that little animal dearly and she sobbed for hours. Also on Christmas Day 2012 I developed the worst flu that I’ve ever had in my life and I spent most of the Christmas holidays in bed, shivering, coughing and struggling to breathe.
Sadly I have very few photos taken Christmas 2012. Leah’s fifteenth birthday celebrations over the New Year were also marred by a phone call from our family doctor suggesting that Leah may have leukaemia.
Although Leah didn’t actually have leukaemia, it took months to get the correct diagnosis of a rare haematological malignancy known as myelodysplasia with monosomy 7. On one occasion, when Leah was an inpatient on our local haematology/oncology ward, a doctor told us that all that was wrong with her was constipation and he discharged her home to take Movicol.
Thankfully, ten minutes later a consultant haematologist came along and told us to stay in hospital and he ordered more tests. I’m convinced that Leah would have died – of negligence – if we had listened to the first doctor and gone home. At least we now know that everything that could have been done to save Leah’s life was done.
Leah’s illness entailed her and I spending approximately 20 weeks away from home and family. After having her bone marrow transplant in Bristol Children’s Hospital Leah then got just six short weeks at home. She had one last Christmas – she made it to 8.30am on Friday 27th December 2013 before being admitted to hospital for the last time.
The next time that I returned home was on Thursday evening the 16th January 2014, when I gathered up Leah’s selection boxes, her Terry’s chocolate orange, her Christmas presents and the wrapping paper that she had left strewn around her bedroom. Feeling dazed and numb, I tidied them all away along with her unopened birthday presents, to make room for her white coffin.
The story of Dax Locke, his illness and his last Christmas have been made into a film called The Heart of Christmas.
Miriam and I watched this film last night. It is a sad film but it is also beautiful, because it encourages us to “cherish the moment” and to appreciate the truly important things in life – our relationships with those we love.
Since Dax’s death, his Mum Julie has worked tirelessly to support other families with a child going through cancer treatment. She has set up The “Cherish Every Moment” Dax Foundation and has raised over 1.6 million dollars for the St. Jude Children’s Research Hospital where her son received his treatment.
Like me she knows that everything possible was done to save her child’s life, but that with ongoing investment into research, more can be done to improve the survival rates from children’s cancers and to minimise the toxic effects of treatments.