The Heart of Christmas

The Heart of Christmas

The heart of Christmas has a name

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.  

 

The Calendars

The Calendars

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We are part of a large close extended family and at Christmas we have some big family get togethers. This photo shows just my husband’s side of the family, but it has three more members since then – via marriage and birth.

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We decided several years ago that it was far more important to spend time together than to lavish money on expensive gifts.

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My children always liked to have some little gift to give to aunties, uncles, cousins, grannies and granda’s. At one stage Leah used to hand make a book mark for each person. Then, about four years ago, we started making magnetic calendars on Vistaprint. Leah used to design these. We printed two or three dozen each December. I’ve no idea how we missed the “typo” in the 2011 one, where the second Scripture reference should be 1 Peter 5:7!

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When I look back at the wording Leah chose for the 2013 calendar I am amazed – prophetic words indeed. This calendar would have been made around three weeks before Leah’s first trip to the GP and the blood test that changed everything.

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The calendars seemed very expensive to print that year. In all the busyness and expense of Christmas I became very irritated and I crossly told Leah “This will be the last year that you’re making those calendars – they’ve got far too dear.” Sadly those words came to pass in a way that I could never have imagined.

My Facebook “Timehop” app tells me that this day three years ago I posted a link to a song called “One Last Christmas”

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I have no recollection of seeing this video before or of posting this song 12 months before Leah became ill and 24 months before her final admission to hospital.

I’m really struggling emotionally this month, but I’m also thankful that Leah actually made it home from Bristol, that she had six weeks with us in her beautiful purpose built bedroom, that she got to spend time with some of her family and friends and that we did indeed have “one last Christmas”!

“It’s the news that no one hopes for
Every parent’s greatest fear
Finding out the child you love so much
Might not make it through the year

Now the thought of spending Christmas
Without him just feels wrong
They’ve been praying for a miracle
Now they’re praying he can just hold on

For one last Christmas, one last time
One last season when all the world is right
One more telling of the story
One more verse of silent night
They’d give anything so he could have
One last Christmas”