Simon's Mom

A quick trip home allowed us about 5 minutes to unload the car, pet all the pets, and turn around and come back to Denver. We made it back to Denver just as the snow began to fall. Simon is coming down with a cold, complete with cough and runny, stuffy nose. We will be watching that closely, hoping it doesn't land him back in the hospital.

When we arrived back at Brent's Place, we learned the sad news that Derrik, age 19, finally lost his battle. He was diagnosed at age 6, so it was a very long journey for him and his family. My heart breaks for this family.

As parents, we head into bone marrow transplant hoping this will be the cure for our child. We know it will not be an easy road, but when we get through it, our child will be healed. Reality can be brutal.

The reality that not all the kids make it out of the hospital. The reality of a mother having to bury her 8 year old daughter. The reality of a father, who has been fighting for his son's life for 13 years, and loses the battle in the end. The reality of the mother who is taking her 8 year old son home, a year after transplant, to live his finally few weeks at home, instead of in the hospital. The reality that any one of them could have been or still could be, my story.

While all of the bumps in this road called Simon's Journey have been mild, we still have a long ways to go. Although we pray that Simon's transplant is his cure, we also know that Simon may face many more battles in the years to come. The medicines that Simon takes to prevent his new marrow from attacking his body are hard on his kidneys. The antiviral that Simon is getting weekly to fight the adenovirus is toxic to kidneys, and can cause total kidney failure. Simon went into transplant with kidneys only working at 80%, due to his year and a half on immune suppressing drugs.

The chemotherapy that Simon received to prepare his body for transplant puts Simon at increased risk for future cancers. The steroids that Simon has had to take to combat graft versus host disease, have had brutal effects on his body, placing his bones and his joints at risk. All of the meds Simon has been on have given him a bleeding ulcer. Until Simon's t-cells come back, he is at high risk for infection, and a simple cold can land him back in the hospital.

I will continue to pray for the best outcome for my child. I will continue to hang onto hope for his future.