Discouragement and Hope

To say that I was surprised by today's disappointing blood counts would be a lie. As the nurse withdrew Simon's blood, I could see in it's color that my suspicions were true. Healthy blood should be a deep red, and Simon's was closer to the color of fruit punch.

Watching Simon's lethargy over the week-end prepared me for a low hemoglobin count. While Thursday and Friday had been good days, on Saturday, I knew things were moving in the wrong direction. He barely left the couch. A quick trip to the hair salon sapped what little energy he had. On Sunday, he didn't really start to wake up until 11, and even then, he spent the day listlessly on the couch.

The new bruising on his body told me that his platelets were also lower. Frequent complaints of blood taste in his mouth were also due to the lowered platelets. While there are fewer patichia on his body, the ones he has are bigger and brighter. He looks like he has been playing tackle football without any protective gear.

He has complained of stinging in his knees and ankles, which are due to serum sickness. Fortunately, those have been brief. While they may intensify as we wean him off of the steriods, the doctor assures us that the horse serum only lasts so long in the body, and its negative effects should soon be gone. If they become to uncomfortable, he will go back on the steroids for another week.

Last Thursday, I had been ready to do cartwheels up and down the sidewalk. Simon's counts had all been up, and his white cells were actually in the normal range. The granulcytes, the indicators of susceptibility to infection, at 2.4, were well above the .5 level that would mean Simon was extremely vulnerable and unable to even attend church. We had a glimpse of hope.

And yet, I knew, in the back of my mind, that it was too early to be working. I knew that I needed to guard my heart, lest a drop in counts cause me to crumble. While I held on to hope, I also prepared for what today would bring.

Today's granulcyte count was back down to .9, inching closer to the benchmark .5. Dr. Cook explained that steroids can temporarily raise that count. He also told us that there is a new medicine available that can help bring those numbers up. If Simon's levels reach .5, he will try to get the okay from the insurance company to begin those treatments. It is a very expensive drug and insurance companies have been reluctant to okay it. It will require twice a week IV treatments.

Most of the results of the specialized testing they did on Simon are back. Most of them gave no indication of what may have caused this journey in the first place. He did have indicators of possible PNH. They were low, and in a healthy child, would not mean anything. Since Simon has aplastic anemia, the test will be redone. PNH is another illness that often goes with aplastic anemia. It may be the cause. If he has PNH, he will have to have the bone marrow transplant.

There is a virus called CMV that Simon may have recently had that could have triggered the anemia, but that is also inconclusive at this point. There are a couple of other tests that are still pending.

I asked the doctor about the future, now that I have gotten past the initial shock of the diagnosis and am beginning to understand a bit more about it. I asked if the immune suppression would actually be able to cure Simon, or merely place him in remission. His honest answer was that he did not know. In other counties, they always go to transplant in kids. In the US, they have sometimes found the atgam to work. Dr. Cook's personal experience has been that the atgam at best will put him into remission for a few years, but more than likely, he will need a bone marrow transplant at some point in the future. Maybe 3 months from now, or maybe 2 years from now. The atgam is safer and easier than a transplant, so that is the first course of treatment.

If, or when, Simon has his bone marrow transplant, cure is more likely. He may have to have two transplants within a year, but would then have a better hope at a cure, rather than remission. He would be tested regularly up to the 5 year mark following transplant. At that point, recurrence would be unlikely.

Next week, the entire family will be tested for bone marrow matches. Beau still wants to be the one who gives part of himself to make his brother better.

In the mean time, we wait. We wait, and pray that Simon remains free from infection. We wait, and pray that we will be able to stop the next nose bleed, or that he doesn't start to bleed internally. We wait for those glimmers of hope that we so desperately need. We wait and pray that my discouragement doesn't show through and infect Simon's courageous spirit.

At church on Saturday night, the pastor talked about Simon. He called Simon his hero. In Simon, all those around him are able to see his courage. His attitude gives others, including his mom, hope.

Dr. Cook today commended us for how "normal" we have kept Simon's life through this extraordinary ordeal. He commented on the inner strength I seem to possess. I have heard that more than once in the last few weeks, and it still amazes me. Others may see it, but I sure don't feel it. I was able to tell the good doctor of the tremendous support we have received from both the school and the church. They have held us up through out, both physically, emotionally, and spiritually. They are the tools God has given our family to enable us to get out of bed in the morning, to face the challenges of the day.

When we left the clinic this morning, Simon said his shirt felt wet. I looked over to see blood seeping through his shirt. There wasn't a lot, and it looked like it was already drying. I looked at the bandage underneath, that covered his port. It looked like it had stopped bleeding, so we continued on our way.

We picked up Grandma from the dentist. We grabbed a bite to eat in the car. We stopped by the bank. Each time we stopped, I checked Simon's chest and saw no new signs of bleeding. We headed home, hoping to make it in time to share Beau's birthday cupcakes with his class at 1:30. First I had to get Simon and Grandma home.

When we arrived at the house, I was surprised to see more blood on Simon's shirt, as well as blood on the shoulder belt in the car. I took off Simon's bandage to discover that it was soaked through and the site were they poked him for the blood draw this morning was still bleeding.

I found some gauze and applied pressure while I tried to reach the clinic. It was their lunch hour and I couldn't get through. I called the school to let them know that I wouldn't be there for Beau. I thought I was going to be heading to the hospital.

Right after I got off the phone with the school, the bleeding finally stopped. Give thanks. He had been bleeding when we left the clinic around 10:45 and it finally stopped around 1:15. Two and a half hours of bleeding. It was blood coming from a small needle poke, so it wasn't' large amounts, but it bled for a long time.

When I was able to speak to the clinic, I got advice for future occurrences. Any bleed that doesn't stop within 15-20 minutes when pressure is applied, will require a trip to the emergency room. We would have to notify the clinic, and they would notify the ER so they could have the specially treated platelets ready for Simon on our arrival.

All in all, it has been a day of discouragement. I was expecting it, so I was prepared and did not fall apart. (My prayer is that I keep the discouragement from Simon.)

And yet, in the midst of discouragement, there were glimmers of hope. I'll hold on to hope, no matter how faint. "And now Lord, for what do I wait? My hope is in you." Psalm 39:7

And tonight, I remind myself to give thanks.