The Heart of Christmas

11/5/2011:  11:15 PM

I don't know if you are familiar with the Dax Locke story. If not, I think you should be. This little boy from Washington, Illinois was diagnosed with Leukemia (AML, Davis has ALL) when he was a year old. His illness transformed the little town as the community pulled together to bring Christmas - early - to the Locke family. 

Despite being torn about doing so, I watched the movie based on the Locke Family experiences, "The Heart of Christmas". It paralleled so many of the experiences and emotions that we have felt on our journey. Please let me be clear; Davis's prognosis and treatment is much different from that of Dax's, but I could identify with so much of what Dax's mother conveyed through her blog (It was narrated in the movie). The movie is a bit of a tear-jerker (What movie about a child with cancer isn't?), but I noticed my tears were flowing because the medical language and acronyms were too familiar, and when the doctors and the parents were talking, I knew what it meant; it didn't sound like foreign jargon. I could identify with her comments about the goal-oriented optimism that abounds on pediatric oncology floors everywhere and the development of my new superpower to see germs.

But beyond the story of a family on its journey, it is about a community that cares and loves an ordinary family with an extraordinary need. And we have felt that ten fold. It seems as though nothing is impossible when we are backed by the saints and warriors who fight with us. We can't thank you enough.

This movie - this story - was a great reminder to us that more needs to be done to end Leukemia and childhood cancers.  And as much as research and resources are constantly in need to offset the search for the cure, prayer for healing (physical healings, healings of broken hearts) is just as much in demand.

Matthew West wrote a song, "The Heart of Christmas"  in memory of Dax Locke. I will attach the link. The link tells a bit about the Locke story and gives you a place to click on the song and video.

The Heart of Christmas by Matthew West 


But I strongly recommend the movie.

I am not sure when it airs again, but I watched it this evening on GMC channel.

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Davis's counts were ok today. His ANC, which was over 4000 last week, had dropped to 1116. Healthy kids are above 1500.  Platelets were still low but high enough to proceed with a modified dose of chemo tomorrow.  The chemo has been scaled down a bit due to the major counts hit last week and mouth sores.  Although Davis no longer has mouth sores, the doctors don't want to repeat the dosage that was too strong and caused them to begin with.

Davis still needs to gain weight. His appetite has picked up quite a bit (answer to prayers) but the weight isn't holding. He only gained 4 ounces last week.  Our goal at the end of October was to gain 10 pounds by Christmas. At the time, it seemed possible. I think seeing him in this nearly emaciated state really bothers me more than some of the others things we have experienced. It is a constant reminder of his illness and how fragile he is. I often find myself wondering how he would be wearing his hair had he not lost most of it or if he would have put on some height like many of his friends have. I look back at pictures and sometimes struggle to remember when he looked so healthy and strong. I know Davis will be grow healthy and strong, and that one day, we will look back at the pictures of this journey and struggle to remember a time when Davis was so thin and fragile . . . I am looking forward to it.

After tomorrow, Davis will get a couple of weeks off. He will start a new phase of chemotherapy right before Christmas. The timing isn't all that great, but at least we will be inching closer to being in maintenance. And one not so good Christmas will help to ensure many, many more.

Unlike so many children undergoing chemotherapy, Davis has remained in school. He does miss days for transfusions and chemo treatments, but he has maintained a sense of routine. I am so grateful for it. Davis' overall health is so much better when he attends school.  Being around friends and normal 10-year-old stuff has healing properties of its own.

Kyle will be driving us to St. Louis tomorrow. I am amazed about how apprehensive I have been about getting behind the wheel since the wreck. I am sure it is only natural. I definitely have a bit of anxiety while driving.  Today, I was amazed at the number of people flying by me on River Hill.  It seemed like they were all going super fast.  It didn't take me too long to glance at my speedometer, and I noticed I was going 48 mph. Oops. No wonder it appeared they were going insanely fast, I was crawling along during the morning rush hour.

We thank you for your support, encouragement, and prayers. Always.

We will keep you posted.