Simon's Mom

Today's sky has been a reflection of the moods of my heart today. When we left the house this morning, the sky was blue. There wasn't a single cloud in sight. While the temperature was a bit frigid, it was one of those cool, crisp winter days that makes the world feel clean and fresh, full of hope.



In my heart, I felt the same way. Simon's treatments were to begin today. It was a day of hope and joy. We knew it would be a long day. We were told to expect 7 hours from beginning to end. We were prepared for that. We packed books and school work, computers and Simon's MP3 player. I made some sandwiches and packed some snacks. Almost sounds like I was packing for a picnic or a road trip. I guess the treatments were to be a kind of road trip. It was to be the road to recovery.



We arrived at the clinic in good spirits. Simon was feeling good. His blood check showed his levels holding and his hemoglobin actually up a bit. Our spirits remained high. They gave Simon a small amount of the treatment medicine in his arm, to make sure he wouldn't have a bad reaction. Then they gave him benedryl and steroids to prepare his body for the treatments. All signs were good, so the therapy began.

Simon worked on his school work, and we were all getting a bit hungry, so I offered to go and pick up lunch. Simon and I love Thai food, and there is a place not far from here that has the best soup. Bob stayed with Simon.

When I walked outside, I was shocked to see the change in the sky. The sky had gone from clear blue to dark and gray in the short time we were in the clinic. My first thought was how ominous it seemed. I put aside the sinking feeling in my heart and went and got lunch.

When I returned to the clinic, all was well, and I laughed inside at my silliness. We enjoyed our lunch and decided that Bob should pick Warren up and take him home. (Warren only has one class on Tuesdays and Thursdays, so he is done at 10:30.) We didn't know how late we would be at the clinic, and didn't want Warren to have to wait at the bus stop. Bob would be able to take Warren home and wait around until Oliver was done with Orchestra and take him home also. By that time, we should be done at the clinic and all be able to head home.

About 30 minutes after Bob left, Simon started to shake. It was bad. He was shaking violently and couldn't stop. His legs started to hurt. He was hurting and scared. I was holding him and trying to comfort him, but I was scared too. I was praying for the strength to reassure Simon, but how could I reassure him when I was so frightened myself? People keep telling me how strong I am, but I was feeling so very weak.

I called Bob while the nurses were medicating Simon. Bob was already over half way home with Warren. I told him to take Warren home, but to come straight back. Simon wasn't doing well. I was holding Simon, but so needed someone to hold me!

By the time Bob reached home, Simon was stable again. We decided to stick to our original plan of getting Oliver home and then returning for Simon and me.

The last 4.5 hours have been full of ups and downs. The shakes will subside, but then his temperature is over 104. What started as one small spot on his shoulder has spread to huge hives all over his body. As the treatment for the day came to an end, his shaking started up again. This time, the medicine took longer to counter act the affect. Again, his fever was up to 104. It has now dropped to 103.7. Still too high, but it is going down. The hives are fading, put the patichia, are worse. (Patichia are the little red spots that sent us on this journey to begin with, exactly 2 weeks ago today. They are an indicator of low platelets.) Tonight will be rough, needing to administer tylenol and benedryl around the clock.

As I type this, the shaking finally seems to be lessening. His hives are definitely fading. All a good sign, and yet my heart is still clouded with gray.

The last patient they treated with aplastic anemia had a horrible reaction on the first day. The following days were a piece of cake. No more hives, fever, aches, etc. I want to be hopeful, but am afraid. I had not prepared my heart for today. I don't want to let that happen again. Simon needs me to be strong for him.

We are finally home and Simon's fever is completely gone. His hives have faded and no more shakes. He is feeling good, but a bit sleepy. Perhaps we won't have to be up around the clock after all. I can feel the hope creeping back in.

The gray of the day has not faded, but the snow falling from the sky is turning all that is brown and ugly to a beautiful and sparkling white. While my heart is still heavy, I am encouraged. Perhaps tomorrow will bring back the sunshine. Even if it doesn't, the snow reminds me of our precious Savior. I am reminded of our sins being washed whiter than snow. Jesus' blood heals our souls and I continue to pray that He will also heal my son's blood.