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Tie a yellow ribbon

Every Friday during National Childhood Cancer Awareness Month we will be sharing Patrick’s journey.

It was Christmas and our second time being inpatient during the holiday season. This year felt different to me, however. Unlike other years, our season was filled with anxious anticipation and not the expectation one typically associates with Christmas. Stem cell transplant was our holiday milestone. I knew the odds. Patrick had endured so much in his effort to defeat cancer. Yet, disease remained. Furthermore, he had more cancer than the doctors like to see when going in for stem cell transplant. 

My goal has always been to make Christmas a special time for our family. I work tirelessly to give them the full experience of joy that comes with the season. I ready our home with the decor, the fragrance and the food enjoyed at this most wonderful time of the year. But, decorating the home this season took on a new meaning. I wasn’t just decorating for Christmas, I was decorating for that moment when Patrick would return home from the battle and I wanted him to have the full experience of Christmas and family when he returned.

Like many families whose loved one goes off to war, I chose to adorn our trees with yellow ribbons symbolizing the anticipation of our son’s safe return from the battlefield. With the help of Patrick’s twin brother, Trent, we substituted the expected bow for the shape of a childhood cancer awareness ribbon and tied one to every tree. On the streamers I wrote Patrick’s name and 2 Kings 20:5 (“…I have heard your prayer and seen your tears; I will heal you”).

Making a list and checking it twice also had new meaning for me. I worked hard to consider everything we might need during the six to eight week hospital stay. Patrick’s care was my priority. I purchased the softest wash clothes and towels I could find. I knew he would be very sick and his body fragile. I brought soft blankets, toiletries and toys for him. For me, I tried to get things to make our lives more simple and organized. Towel hooks for the bathroom, folding tray tables to use as end tables or dining tables, lamps to provide me soft light while Patrick rested, a Keurig to brew my much needed coffee and my favorite book, the Bible.

Stem cell transplant was everything I was warned it would be and more. You think you’re prepared, but you’re not. Transplant starts with high-dose chemotherapy. The chemo is completely debilitating and Patrick’s body was racked with pain. Inside his body painful sores developed because the chemo destroys all the good bacteria with the bad (he had no immune system). To further complicate the therapy, Patrick developed an allergic reaction to some of the medicine and he became extremely ill.

Patrick endured cancer with an ever present smile on his face. At this juncture however, tears flowed from the pain, misery and lonely separation from his twin brother. For the first time he said, “Why me, Mommy? Why me?”

Adding to the trauma of this experience was the loneliness that comes from being separated from loved ones. The stem cell transplant unit allows only two visitors at a time. Patrick and his twin brother, Trent, have a very special bond. The weeks they were separated were painful for them. Both developed severe sadness. However, we felt the risk was too great to bring Trent into the unit during cold and flu season. Patrick did not have the ability to fight an infection.

I was missing my husband and the other children too. My thoughtful husband provided me with many loving surprises along the way to keep my spirits high. He showed up one night with a picnic basket. Patrick was asleep, the nurses had disappeared for the night and I just finished my shower. I was so surprised to see him. Sitting together in the dimly lit room, we ate and spent hours visiting and sharing time uninterrupted by the hospital staff. He also rented a stationary bike by the week and had it delivered to my room. Having the ability to relieve some stress with a workout was a blessing to me.

Following chemo, the moment came to infuse Patrick with his stem cells that had been harvested months prior. I knelt at his bedside and prayed as I had done so many times before. This time, it was for those life giving cells to do the job God created them to do. Also, I prayed for his recovery and healing. I touched the line leading from the small bag hanging from the pole. With my naked eye, I could see these amazing little cells travel from the bag, through the line and back into Patrick's body. I felt like I was witnessing a miracle! The cells did their job. Slowly, Patrick’s body began to recover.

Our Christmas celebration came late for our family that year. The meaning associated with the removal of the yellow ribbon from the trees was especially sweet. Patrick made it. He survived the arduous journey of stem cell transplant. He returned home from the battle! To God be the glory! What a blessing!                     

Patrick’s journey did not end with transplant. While reduced, cancer remained in his body following this treatment. In spite, we remained hopeful and believed somehow his healing would come.          

Laurie DeClaire, mother of patient