Releasing the Pause Button

My kids are growing up in a world of technology. We have always had a VCR and more recently, a DVD player. They play handheld electronic games and computer games. Just recently, the kids got a Wii. One of the side effects of all this technology has been vocabulary the children use.

When the kids are in the middle of a game of make believe, and they are interrupted for dinner, or to take care of their dogs, or any other reason, they say to one another, "Pause the game." This terminology has always cracked me up. It is surely a sign of the times.

How often in life, do we wish we could just hit the pause button for a time. It would be nice to be able to pause life for a time to catch up on sleep or the unending chores that need doing. I have often wished for a mute button when the kids are getting loud or arguing with one another!

For the last 2 months, there has been a pause button on our lives. When we received Simon's diagnosis of severe aplastic anemia, someone hit the pause button and our lives were put on hold. Plans for the future stopped.

We had been planning a trip to Portland and Seattle to visit friends and family. While Bob has been out there a lot over the past 2 years with his job, it has been 4 years since our last visit. I had been looking forward to the road trip and to seeing friends I hadn't seen in years. Then the pause button was hit. With Simon's illness, travel was out of the question.

Yesterday, Simon was back at the doctor for his routine check. It had been a whole week since we had been. Simon has been active following his transfusion of 2 weeks ago. He even went out sledding a bit when we got the snow last week. He has a few new bruises on his arms, but nothing severe. I was anxious to find out what his counts were.

When the nurse brought in the count sheet, I was blown away by the platelet count! It has been climbing steadily, but over the past week is flew! Last Monday, it was up in the 80's. Yesterday, it was at 164! Normal range starts at 140! No longer do we have to worry about something as mundane as a nosebleed or a simple fall, or Simon bumping his arms or legs. As far as bleeding goes, Simon is a normal kid again, able to participate in everyday activities.

Simon's red count, especially the hemoglobin, is exactly where it was last week. While still below normal, it is high enough that Simon is not easily tired. He can go sledding or take a walk or ride his bike, just like any other kid!

Simon's white count is a bit lower than it was a week ago. It has gone from 1.8 down to 1.1. Low, but much higher that it was when he needed Neupegen to bring it up. It is high enough that Simon can go shopping. He can go to a movie or the mall, or a crowded restaurant. He will be going back to school after spring break!

Dr. Cook is thrilled with Simon's progress. It appears that Simon is responding well to the immune suppression therapy he received early in February. For now, we made be able to avoid the bone marrow transplant!

Simon's bone marrow is still at 5%, but Dr. Cook had warned us about that. He said often the peripheral counts come up before the bone marrow actually starts to rebound. We will do another bone marrow biopsy and aspiration in 2 months.

We are still waiting to hear if any of Simon's siblings are matches, but with transplant on the back burner, that doesn't seem so critical at this time.

Simon still has some PNH cells, which are malformed red blood cells. That is very common in aplastic anemia, not necessarily indicating that Simon has PNH. However, about 1/3 of people with aplastic anemia also have PNH. For now, Simon's PNH cells are low, so the doctor will continue to watch that. If actual PNH develops, Simon will need the transplant.

We are also still waiting for the results of the chromosomal fragility test. I still have no idea what that means, but am not going to worry about it.

Over the past 2 months, we have visited the clinic anywhere from 2-5 times a week. Throw in the occasional trips to the hospital, and Simon's illness became a full time job. Our next visit is scheduled for 2 weeks out! Down to twice a month! I am loving it!

The pause button has been released! We are once again able to play! While I will not make any plans that cannot be easily changed, I am once again contemplating a summer road trip. With Bob working from home until July, the kids and I should be able to take a couple of weeks to head to the west coast in June. We might even be able to squeeze in a camping trip or two. Life is moving forward! God is good and I give thanks!

On another note, this morning at 5:30, I dropped Oliver off at the church. He is heading to a youth conference at West Coast Baptist College in Lancaster, CA. I am thrilled for him to have this opportunity. He has always been my rock, stepping up to help when needed. Over these past 2 months, he has taken on more than his share of responsibility around here, even without being asked. He has earned this break. His trip will include a day at Magic Mountain Amusement Park. I am missing him already!

I do not know what tomorrow holds for Simon or the rest of our family. I do know that today, he is healthy and we are going to rejoice in the day and HAVE FUN! We are hitting the play button!