Simon's Mom

Simon before transplant and Simon now.

While still not feeling great, Simon does appear to have turned the corner on this virus. His cough is less, he is going through far fewer tissues in a day, and he ate three meals yesterday. Rejoicing in the baby steps.

It has been three years since Simon was diagnosed with severe aplastic anemia. Where has the time gone? He was a month and a half shy of his 11th birthday. He will be 14 in March.

Looking back at his pre-transplant pictures, it is hard to recognize him. He has grown several inches since last May, and the multiple rounds of steroids to combat his graft versus host disease has caused his face to swell up like a balloon. He has stretch marks every where. His legs, his arms, his back, his belly. The stretch marks will eventually fade, but never go away. Right now, they look raw and sore. His face will eventually return to normal and he will lose his extra chins. It could take months from the time he is finally off the steroids.

The good news is that he is on his last dose of steroids. The plan is to have him completely off the steroids by Wednesday. Then we pray the graft versus host does not return. In spite of all his swelling and his growth, he has not gained any weight. That being said, the next worry would be rapid weight loss without the streoids.

This whole process is a balancing act. The immune suppressing drugs to battle the graft versus host put him at increased risk for infections and viruses. The steroids battle the graft versus host, but also further suppress his immune system and play havoc with his body, form weakness, to swelling, to increased blood pressure, and even diabetes.

I asked the doctor when Simon gets to be a regular kid again. Simon will lose one more summer to a compromised immune system. Travel and activities will be limited this next summer, but at least he won't be stuck in the hospital. By the time he can really get out and participate fully in life again, he will be old enough to learn to drive. WOW!

God has been so good to us through this whole process. He has given us the strength to make it through each day. He has carried us through the tough times and held our hands through the good. He has blessed us beyond measure through the people we have met on this journey. He has seen to our every need, even before we knew what we needed. Some days are easy, and other days are hard, but God is always good.