Thursday, February 13, 2014

Snowbound With Hope

Like much of the south and south eastern part of the United States, I am snowbound, only not at home without power and thankfully, not snowbound on the side of a road in a cold car. Currently, I am safely snowbound in a hotel across from Duke University Hospital in Durham, NC. Leaving snow falling in Fayetteville, NC on Tuesday morning and arriving just ahead of some winter weather for this area, my sister, nephew and I checked into the hotel for another round of the seemingly endless post-cancer follow-up examinations, tests and appointments. Don't misunderstand; we remain abundantly thankful for the opportunity for these visits. Trying to keep perspective can sometimes be difficult, but like every other visit to Duke Children's Hospital, God will remind us of magnificent healing and Hope!

Thomas turned 12 last week and wears the 6 inch posterior cranial scar beneath this winter's hair. The words "a malignant brain tumor" still seize the heart, despite the surgery, physical therapy, and 30 radiation treatments. A little over two years ago, the post-radiation MRI scan reads "all clear"! Life is supposed to just go on after that; it does, but in a radically changed way. Everything feels and looks different. This new found perspective comes with a steep price but the life experiences are priceless. 

Along with a fasting blood draw (for a future appointment), there is the MRI with contrast, then the appointment with the radiation oncologist who will reveal the results. Needles are never fun, no matter how kind and professional the medical staff. Lying perfectly still with your head in a cage for an hour never gets easier. Then there is the waiting to hear the results. Every repeat test opens the door for old memories and new possibilities. The routine of these every 3 month or 6 month exams can almost become rote, but there are triggers ~ sights, sounds, smells. These unpredictable memories come suddenly and capture the heart, like being snowbound in a winter's storm.

This visit added another dimension ~ the 20th Annual Duke Children's Hospital Radio-thon by MIX 101.5 WRAL in Raleigh. Set up right in the middle of the lobby of the DCH, tables with phones manned my volunteers, the radio personalities interview children and parents of Duke patients. Some travel for miles as they are invited to this event. Some children are patients now, some have been patients for years. Story after story of hope is shared live on the radio. People all across this region listen to these stories and donate to the cause. This two-day annual event raised $1,070,000 this year for Duke Children's Hospital. Last year Thomas and Linda were interviewed, and again this year, Thomas, an official Ambassador for Duke, shared his story and wrote 'thank you' notes to sponsors.

The atmosphere brings laughter and excitement but the children bring the love. All ages with all kinds of medical problems gather. Their commonality is Duke's medical care and their scars. Some scars are carefully hidden while other are openly worn without shame, without option. Smiles come easily and hugs always invited. Parents recount stories and nod with understanding while deep emotions reveal their private, invisible scars. Patients that have endured and nearing high school graduation sit beside patients thriving in elementary school but struggling with on going medical problems. We sit across from Micah, barely starting elementary school, sporting a creative spirit and a tracheostomy while undergoing palliative chemotherapy for a brain stem tumor that has already spread to his spine. For now, he looks forward to Duke's Dance Marathon fundraiser March 22, but there will be no cure for Micah this side of heaven. I watch his mother bravely wearing hope, thankful for the time Duke is offering her. Snowbound with hope!

For us, the MRI continues to report "all clear" while Thomas continues to grow, physically and spiritually. God's presence comforts and encourages us as we walk this journey together. In December, Thomas, ever the fundraiser, promoted a Small Toy Drive at his school and brought 5 large containers of toys for children staying in the hospital and those receiving chemotherapy treatments. Thomas' Radio-thon website page for Duke has raised $1650.00 to date. Always quick with a smile, he explains that God has healed him with the help of Duke and now it is time to give back ~ generously and with thanksgiving. Colossians 3:17 reminds us: Whatever you do or say, do it as a representative of The Lord Jesus Christ, giving thanks through Him to God the Father. Lord, I pray our life experiences will keep each of us 'snowbound with hope' in Jesus! To God be the Glory! ~dho

from the journal I recorded Thomas' journey:
There are some who see this difficult journey as great tragedy. Surely, it is not something we would have chosen; yet, the goodness of God has been revealed in ways and through people that bless my soul beyond words. The kindnesses offered and the gestures of love come along side the weariness that this illness brings. Through these sometimes small and often huge offerings, the spirit is renewed. Invisible, intangible HOPE comes to rest within the soul; the Presence of God is near. To God be the Glory! !dho