We win in the end

I originally found myself saying “We Win In The End” after finding out that all three of my sons had an incurable, fatal disease known as metachromatic leukodystrophy (MLD). My wife, Sonya, and I are Christians and that alone is the basis for this phrase. We have found that if we focus on the near future, it looks terrible, and we can’t see how we were going to make it. But we know as Christians that this earth is not the end result, only the place where a person decides how s/he will spend eternity. My love for my God, Jesus Christ, and my understanding of his teachings makes me recognize that our earthly existence is the place we develop a relationship with Jesus so that we can spend eternity with him.

The reality of this became very clear to me during my tenure on the “5200” unit of the stem cell transplant ward at Duke University. My youngest son, Jack, received an umbilical cord stem cell transplant on April 1, 2005, with the hope of stopping the progression of MLD. Jack and I lived on the 16-bed unit for a total of 43 days and during this time I kept a daily journal of what was happening with Jack and myself along with the other 15 families that were there. My first experience of truly understanding “We Win In The End” occurred on Tuesday, April 5, 2005. Here is my journal entry from that day:

My little Jacko’s hair started to fall out today and to prevent a constant shedding over the next couple of days, I gave him a Marine haircut. They have a Sunbeam electric razor with a short comb available for use when the children begin to lose their hair. Jack did a good job of sitting still while I cut all of his hair off. If Jack would have been Demi Moore, it would have been a hospital setting rerun of GI Jane. I think Jack presents very well as a bald toddler. His head is a good shape for having no hair on it. The mucositis is beginning to cause Jacko some discomfort and all I can say is thank God for narcotics. All in all, he is progressing as scheduled and I am looking forward to seeing my Sonya, John and Christopher this weekend.

Today was kind of a somber day on the unit. Jack’s next door neighbor died this morning as a result of complications from transplant. Her name was Karri and she was 12. When one of the children dies, they have someone from Family Support come to each room and let the individual families know. They do this because we always find out anyways and I think it gives Family Support the opportunity to give counsel as needed.

It brings comfort to me that the family of Karri has a strong relationship with Jesus and I pray that they can find comfort in knowing that she is now in heaven and free of her broken little body. I ask all of you to pray for Karri’s family so that they can find peace in the loss of their daughter.

I spoke with Sonya this morning about Karri’s death and she was taken aback. Sonya was making photo buttons with Karri the week before last and was shocked by the sudden decline. I think the best way to describe how something like this can happen so quickly is to relate it to a person standing on the apex of a very steep triangle. On “5200” the children can fall towards good health or in rare instances can fall towards death. The children on this unit only have those two choices simply because of the severity of the illnesses that bring them here in the first place. Every morning I get up and am blessed for a new day with Jacko and the rest of this motley band of children warriors. Never before in my life have I ever been surrounded by a group of heroes such as these. They have placed a profound effect on my heart that I will never forget and I am better for it.

I ask all of you who read these journal entries to spread the word of this continuing story, to tell all that you know about these little heroes and the miracles that are being performed here at Duke University. To tell of the successes of the use of cord blood stem cells. I think we owe it to these children and their families that come here not by choice, but persevere, and as a result make the world a safer place for all of our future children.

Please continue to pray for the health and strength of my family and Jacko’s little prayer of GROW CELLS GROW! Please do not be saddened by this young girl’s death. Take comfort in the fact that She Won In The End!

Since then, a number of children we have known have died as a result of their various diseases. Even though I am not comfortable in accepting their deaths, I am comforted in knowing that even though they may have lost their earthly battles, they are now in Heaven with their Father, winning in the end. They are free from their earthly bodies that caused them pain and suffering, and they are able to run and jump and be happy and free!

Sonya and I understand that life comes to us as we find it, but at the same time we recognize that we are commanded to help our fellow man and specifically children. It is Sonya’s and my intent, through the Evanosky Foundation, to make this place a little better than we found it. In doing so, we honor those children that went home to our Father ahead of us. As the reader, I ask you to get involved and to make a difference.

We Win In The End,

Bob Evanosky