After consideration, we decided that we would follow the current treatment plan, which included the marrow transplant, radiation, and a clinical trial of an Antibody treatment. After that, we would see where we were and make decisions then.

Transplant was agony. I did not know the human body could endure what Nicholas was forced to endure, and still survive. The idea behind a transplant is to give a child enough chemotherapy so all the marrow in the body is destroyed. Without marrow, the body cannot make blood. The transplant is designed to “kick start” their body to make the process work again.

Needless to say, bad marrow is not the only thing impacted. Nicholas had tremendous sores in his mouth and down his ENTIRE digestive tract. He had a seizure from the strain on his body, was very bloated, and required a daily bath to keep his skin from breaking down. He had 3 very dangerous bugs in him, which caused an infection in his central line, and 106 degree temperatures, tremendous pain, and pneumonia. I think about those 42 days spent ion the hospital, I think about what that poor child was asked to endure, and all I can do is cry. Again, though, Nicholas inspired us. Throughout all of this, he wanted to be a kid. HE wanted to read books, he wanted to watch his sports, he wanted to play games, he wanted us to take him for walks so he could say hi to all of his nurse “girlfriends”. He had the strength and grace to present himself this way, even with the agony he was going through. We were so proud of him.

As we were about to go home, Nicholas had a final round of testing to prepare for Radiation, which was scheduled to start weeks after discharge. When those test came back, we were told that even through the intense treatment of the transplant chemo, the disease had continued to grow. He had 2 new spots on his bones, and new disease in his marrow. 9 spots on his bone after all of the treatments. We were told that radiation would not be effective because there was too much disease, and was taken away as an option. Our best option at that point (confirmed by 3 hospitals in total) was the antibody treatment.

Antibody is extremely painful, with an outcome that we were told would extend his time on earth, but not cure his disease. We entered the most painful decision a parent should ever have to make. We are not quitters, we want to keep fighting. But in reality, we are making decisions for our kids – and they are fighting. There is a point where extension of life is for us as parents because we can’t bear to live a day without them, and we want to know we did everything we could have to save them. There comes a time when you are told that it is unlikely your child will be cured.

We might of well have died ourselves. We were helpless. The disease was winning, and there was nothing else we could do…except stop putting Nicholas through the pain of his treatments. Again, there is no right decision, only a decision. Our decision was to suspend treatments, and spend our remaining time not in a hospital, but giving Nicholas the “Best Days of His Life” tour. No treatments, no pain, just fun with his family and friends. We did our best to fulfill that, and with the help of our dear friends, took Nicholas on many adventures. Insert baseball hat picture

On September 11th, 2006, a date that this nation lost thousands of heroes, and 8 weeks after we decided to stop treatment, our hero, Nicholas, died in our arms. He was four. We miss him every day, we are angry every day, we are sad every day. But we are so proud of Nicholas. He lived like we all aspire to. He endured what many of us couldn’t. And his legacy, with the legacy of all children in the smiles family, is only beginning.
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