Monday 20th of September 2010 07:17 AM
By Kim L. Fritzemeier
KFRM Central Kansas Reporter
Kansas Farm Wife along the Stafford/Reno County Line
Kelly & Elise Ballard
"It's a beautiful day."
A year ago, Tony & Kelly Ballard regularly heard those words from their 3-year-old daughter, Elise, to begin the day.
(The Ballards, Christmas 2008)
This time last year, Elise lived a normal 3-year-old life: She played with her baby sister, Abby. She loved becoming a princess during dress-up time, complete with ruby slippers. She poured over books and loved to sing the silly songs of childhood.
But in October last year, she had several episodes where her speech, balance and coordination were affected. The episodes increased in frequency and eventually led to tests and her hospitalization on October 27, 2009, at Children's Mercy Hospital in Kansas City.
A few days later, Tony and Kelly got the diagnosis no parent wants to hear: Their beautiful little girl had acute myeloid leukemia (AML).
It began a journey no family ever wants to make.
Friends and family have walked alongside the family since the journey began, though none of us can really "walk" in their shoes.
But on September 11, we did a little walking in Elise's honor. And it was indeed a beautiful day.
The Junction City Fire Fighting Association Local 3309 sponsored "Running for Elise," an annual benefit run. There were 135 of us there. Some of us chose the 5K. Others the 10K. Some of us walked. Some of us ran. The littlest participants were pulled along in wagons or pushed along in strollers.
Some of us know the Ballards. Others didn't, but they came to walk and run anyway. Our family has kept in touch since the Ballards moved away from Stafford, where Kelly was the elementary music teacher and Tony was the high school music instructor. Kelly also gave both our kids private voice lessons. As a school accompanist, I worked with Kelly and Tony as we helped students prepare for music festivals.
Jill and Eric came from Omaha and ran. Randy & I came from Stafford and walked.
Randy & I had stayed overnight in Manhattan, so we began our day with a short drive to Junction City. On the way, there was just the faintest remnant of a rainbow in the skies looking westward to Junction City.
"What a great way to begin the day!" I told Randy. For me, it seemed like a message from God, directly to Elise and the Ballards. I had remembered a post on Kelly's Facebook page in August:
August 12: "After shopping, we were loading Elise into my car when I noticed a rainbow. It was a complete arc with brilliant colors. Then I noticed half of a second arc. Just beautiful. It was a wonderful reminder of God's love and His promises. I definitely needed this reminder. God is love!"
That gives me goosebumps. Kelly is still finding beauty in this world, even in the midst of this long, slow journey:
Round 1 of chemo was 42 days, from November 5 through December 16.
Round 2: 52 days, December 21-February 10.
Round 3: 33 days, February 24-March 28.
Round 4: 33 days, April 5-May 7.
Round 5: 34 days, May 17-June 26.
On June 26, Kelly wrote on their Caring Bridge website: "We have been fighting cancer 1 day short of 8 months."
They were preparing to leave the cancer treatment area of Children's Mercy at that point, but they knew the journey was far from over.
When the Ballards began the journey, they knew that they would spend the majority of Elise's treatment time at Children's Mercy, with only brief respites at home between treatments.
But during Round 2 of chemotherapy, Elise had some complications beyond the leukemia. In late January/early February, their doctors determined that Elise had encephalopathy, an inflammation of the brain, along with HHV6 (Human Herpes Virus 6). She spent 22 days in the PICU. During Round 3, she was again in the PICU with septic shock from a bacterial infection.
An MRI showed damage to Elise's brain in the areas that control movement, speech, eating, body temperature and sleeping. She quit talking, moving, eating or showing facial expressions.
As Tony explained before the Run for Elise event, it was like their 3-year-old daughter was an infant again.
Elise is still cancer free, but she continues the journey toward recovery at the Rehabilitation Institute in Kansas City five days a week. That will continue through October, when doctors will reevaluate Elise's progress.
As Kelly says:
"There is no timeline for recovery. As our neurologist said, 'Never give up hope.' He said that when you give up hope, she will stop recovering new skills. He is hopeful that, because she is a young child, she will regain most, if not all, her previous skills."
And she is making improvements. She celebrated her 4th birthday in August. She's sleeping more, eating more, sitting up, reaching for toys, playing, coloring, walking with assistance, kneeling, talking in sentences, making her needs known and "antagonizing Abby," Kelly says.
Elise and Abby, Summer 2010
I got a follow-up email this week from the walk organizers and the walk raised $5,800 for the Ballards.
The messages of hope were everywhere that day, from the orange and yellow balloons ...
To the beauty of nature along the River Walk trail in Junction City.
But for me, the most powerful message of hope was in the love I saw exhibited. When Tony was talking about their journey and had to swallow back his tears, Kelly grabbed his hand. And Elise's little hand was intertwined with theirs. It was a picture of a family, holding on to one another through the storms of life and through a journey no one ever wants to take.
And they are doing it together.
In the midst of all this, Tony just lost his job. They would never ask for your help, but I will. There is a fund set up to help with expenses related to Elise's rehabilitation and the family's needs while they help their daughter battle back from cancer and encephalopathy.
If you can help, you can send donations to:
520 N. Jefferson
Junction City, KS 66441
And if you can't help financially, I'd ask that you join a multitude of other prayer warriors praying for Elise, Tony, Kelly and Abby.
In an email, Kelly told me:
"The community has been wonderful. We have tons of people supporting us with prayers as well as financially. It is amazing how a friend of a friend keeps circling out and you have a huge network praying for you. Our pastor & his wife ate in City Market in KC last week and the cashier said he was praying for a girl from Junction City who was at Children's Mercy. Our pastor's wife asked if it was Elise and he said yes. He went to church with someone who know us. AMAZING!"
The Ballards continue to find hope as they walk this journey.
Last November, Tony and Kelly were trying to explain to Elise that she had cancer and they would need to live at the hospital to get medicine to help her get better.
"Tony and I were trying not to cry," Kelly says, "And Elise said, 'I'll be OK.' We continue to hold on to her statement and believe it will be OK one day. While in the hospital, before and after diagnosis, Elise would wake up and say, 'It's a beautiful day!' What hope she gave us! We can't wait until we hear that again!"
And I also urge you to think about something Kelly said on her Facebook page earlier this month:
September 4: "Even though we knew it before, a lesson we have learned from this journey is that time is precious and finite. LOVE YOUR FAMILY! Take the time now, today, to tell the people in your life how much they mean to you!"It's a message worth repeating ...