New Direction on This Journey

In January, 2009, a month and a half before his 11th birthday, Simon was diagnosed with severe aplastic anemia, complete bone marrow failure. He responded well to immune suppression therapy. While he had a few set backs, it was thought that he would be the one to beat the odds and not need a bone marrow transplant.

In June of 2010, he was taken off his meds and continued to do well. In November of 2010, the doctor performed a routine bone marrow biopsy, thinking that in December we would be ready to have Simon's port removed.

While Simon's bone marrow continued to remain strong, some new complications had developed. A clone had appeared in one of the chromosomes. The clone leads to leukemia. In addition, PNH clones were detected in his blood samples. Rather than having his port removed, he would need to be monitored more frequently, and bone marrow transplant became likely.

Subsequent biopsies have not detected the chromosomal abnormality. However, the PNH clones have continued to increase.

Paroxysmal nocturnal hemoglobinuria, PNH, is the absence of a protein around the blood cells, causing the cells to break apart. The major risk in this disease is blood clots, which can be life threatening. The only cure is transplant. PNH is so rare, that few doctors have ever seen it. Simon's hematologist has never seen a case. The pediatric expert in the field of aplastic anemia, who Dr. Cook consults with on Simon, has only seen 2 other cases. Simon's transplant doctor, who has been doing this for 30 years, has seen it once before.

The process began. A search was initiated. Simon did not have a match in a family member. We were very fortunate to find many matches available to him through umbilical cord blood donations.

On Memorial Day, 2011, Simon checked into The Children's Hospital in Aurora, CO. The following day, his first chemotherapy drug was started. He has been receiving that every 6 hours, around the clock. He will receive his final dose at midnight. Tomorrow, he will begin a new drug that is very hard on the kidneys. To protect the kidneys, he will also be pumped full of fluids. He will also have to have a catheter with the new drug. He will receive that drug for 4 days.

On Sunday, he will start ATG to destroy any remaining t-cells. He had ATG therapy when he was first diagnosed. It is a brutal process, causing high fever, severe shakes, and hives. It is hoped that the chemo has already destroyed some of the t-cells, lessening the symptoms this time, but it will not be an easy process.

Day 0 will be Thursday, June 9. That is the day he receives the life giving stem cells. He will remain hospitalized for 4-6 weeks following transplant. It all depends on how long it takes for his new bone marrow to graft and begin producing new blood. When Simon leaves the hospital, he will have to remain in the Denver area for an additional 3-4 months. There is special housing near the hospital where we will be staying.

So far, Simon has had no ill effects from the current chemo. The doctor explained that it usually takes about a week for the effects of this particular medicine to be felt. He has been enjoying life as a couch potato, watching too much t.v. and playing video games. I will admit that it has been nice to be able to slow down and put my feet up for a bit. The views from our hospital room are breath taking.