Simon's Ordeal, or How 48 Hours Can Change a Life

I just thought it might be easier to write a note than to try to update everyone. Here is the story of Simon and the last 48 hours.

On Tuesday, Simon came home and told me he had a rash on his arm. He showed me his right forearm, which had tiny purple dots all over it. There were no signs of a rash anywhere else on his body. I did not recognize the rash, so I made him an appointment for the next morning to see the doctor. I wasn't at all worried, but just wanted to make sure he wasn't contagious before taking him to school.

On Wednesday morning, I dropped the other kids off at school, and then headed to the doctor's office with Simon. The doctor told us that it was actually his capillaries bleeding rather than a rash. By this time, it had spread to his stomach. She said that sometimes kids get this with a cold or other virus and it is nothing, but it could also be a sign of something wrong with his platelets, which help the blood to clot.

As a precaution, we were sent to get his platelet count. We had his blood work done, and then went to lunch while we waited for the results. Shortly after finishing lunch, the doctor called and told us that Simon's platelets were low, although not yet critical. Normal is over 100 and his were at 25. She told us to take Simon to the ER to have him thoroughly checked.

Back to the hospital we went. More blood was taken. Then we sat and waited for the results. Bob had to leave to get the other kids, and still I waited. The doctor finally came and asked me to step out of the room. It was at that moment that I began to realize the seriousness of the situation. As I had begun to suspect, the blood work was not good. Not only were his platelets very low, but also his white blood cells were low, and there were other abnormalities with his blood.

Then the nightmare became real. The doctor said words like leukemia and lymphoma. They were going to do an ultrasound of his spleen and chest x-rays. I then had to hold myself together as I returned to Simon's room. Fortunately, they came right away and took Simon for his other tests. At that point, I broke down. A pastor friend was there to hug me while I cried. He prayed for Simon and our family. I called the school to let them know the seriousness of what we were facing.

By the time Simon came back to the room, I was back in control of my emotions. The ER doctor contacted a pediatric hematologist/oncologist and made sure we would be seen the next day. Although today was supposed to be Dr. Cook's day off, he agreed to see Simon.

This morning, I took Warren to the bus, then came home and got the other kids to school. At PPSEL, I was surrounded by so many caring people. I had to fight back the tears, and my friends were fighting back the tears. I was embraced by all who knew what was going on and covered in prayer.

Then back to the house to pick up Simon and Bob. We then headed to the doctor's office. I was doing pretty okay until I pulled up to the building that said ROCKY MOUNTAIN CANCER CENTER. That sign brought a whole new flood of emotions and fear. Holding myself together for Simon's sake, I pressed on.

The staff at the office were incredible. They went out of their way to make Simon comfortable and to reassure Bob and I. The doctor examined Simon and explained his concerns. Leukemia and aplastic anemia were both probabilities. He explained the procedure for taking some of Simon's bone marrow, and also a sliver of his bone.

As Bob gets queasy at the mention of blood, it was decided that I would be the one to go into the room with Simon while the procedure was done. They used conscious sedation, so although Simon was semi-awake, he has no recollection of the needles being screwed into his back. They put a movie in for him to watch while the medicine took effect.

The doctor looked at the marrow, and saw no obvious signs of leukemia, which is good. That, combined with the fact that Simon has not been at all sick, makes the doctor very doubtful that we are dealing with leukemia. Of course the testing that will be done over the next 3 days on his marrow and his bone will be far more sensitive. Leukemia has not been entirely ruled out, but it is looking less likely.

While that is good news, the bad news is that we are still dealing with something very serious. Aplastic anemia basically means that the bone marrow has forgotten how to make blood. Treatment ranges from immune suppression therapy to bone marrow transplants.

Tomorrow, we will be back to the cancer center for a blood check. This time it will only involve a finger poke. The doctor may have some of the other results back. If he hears anything tomorrow or Saturday, he will call us, rather than making us wait until Monday.

I don't know what the next few weeks hold in store for our family. Simon will be unable to return to school as long as his white blood count remains low. With his platelets being so low, he will be unable to participate in PE and will have to sit out recess, or at least stay off of the play structure and take things easy. As far as where we go from here, I probably won't know anything until we have all the test results back.

I am struck by how much life can change in the course of 48 hours. In spite of the uncertainty, there are some things that remain constant. I KNOW that regardless of what tomorrow holds, GOD IS IN CONTROL. The other constant is the phenomenal friends and family and the out pouring of support. I thank everybody for their prayers, encouragement, and offers of help. With out you all, I couldn't bare any of this. With you, I know our family will come out on the other side stronger. Thank you all.