Camp Esperanza- "The Day I Told My Daughter Goodbye"

 

"The Day I Told My Daughter Goodbye"

by Ken W. Good

No parent wants to see a child go through a bone marrow transplant.  There are things about this experience that we still do not talk about in our family.  There is no logic to why some children make it and others do not.  We nearly lost Laurel.  

Our daughter Laurel was born with a rare condition where she did not make enough platelets.  So when she was five she underwent a bone marrow transplant at Children's Hospital in Dallas.  My wife and Laurel "moved in" to the hospital on December 6th and they did not return home until March the next year.

I stayed in Tyler since our oldest daughter was in school.  I went to Dallas every weekend and my wife would go to a hotel and try to recharge for another week.  We were on the transplant floor which is an isolation floor.  So we did not allow family or friends to help us.

One of the ways that I dealt with the situation was that I kept a blog/journal.  This is the entry for January 23rd:

(Laurel had complications and was in the ICU.  We had been told that she was the sickest child at Childrens and the sickets child in the ICU.  We were told that Laurel might not make it through the day, but she did and she continued to slowly improve over the coming days.  Since Laurel was in the ICU and not on the isolation floor, friends and family came out en mass to support us).

Faith-

We have been talking the last couple of days about what we should do once Sunday comes around.  Laurel continues to show signs of improvement.  She is still on the ventilator.  They are talking about taking her off of this ventilator and putting her on a different kind which is the next step to getting her off the ventilator completely.  The doctors are suggesting that they will try switching ventilators tomorrow.  Laurel has shown much improvement but remains in a precarious position.  We continue to see good signs, but we also are at risk of complications and further set backs.  If everything goes well we could be out of ICU by the end of the week.  But we are still at a dangerous time where Laurel could go either way.

We spent the morning discussing how to proceed.  Who should stay in Dallas?  Who should go to Tyler with Darby?  My preference was to be in Dallas this week.  Of course, everyones preference was to be in Dallas this week.  But Darby has to go back to school and she wanted me to go home with her.  I asked every doctor we saw today for input.  One doctor said that she thought I should stay a few more days.  Two doctors said that they thought it was okay to go home.  The transplant doctor suggested that we all go home and leave Laurel to them and return recharged when she was released from the ICU.  This response made me laugh.  I had to tell the good doctor that he did not know us very well because someone would be with our child 24/7 while she was in the ICU and if he thought that Terri was just going to go home to Tyler for a week of “rest” and “relaxation” then he just nullified his recommendation completely.

With much thought and prayer we decided that we would leave a team of people in Dallas this week.  I do not want Terri to be by herself.  So Terri, her sister and her Mom have remained.  My sister will join them tomorrow.  I brought Darby home and we will continue on with this marathon and try to recharge our batteries from the sprint that we made over the last few days.  Assuming everything goes as expected, I will attend a conference on Thursday and Friday and Darby will spend the night with her best friend whose family continues to allow us to lean on them and allow Darby to spend time with their daughter and laugh and forget other issues.

We also found our laughter today.  As you can imagine it had been missing for a few days.  Our nurse, who has treated Laurel for the last couple of days, told us today that we were a very intimidating family.  We asked her to explain and she laughed and said that the reports from one nurse to the next went something like this:  “the parents are both attorneys, one sister is a nurse and another sister is a neonatologist.  They are highly educated and smart, don’t screw this up.”  We laughed and our nurse also said that we were a very nice family which I think is why she felt like she could joke with us. 

Even though the decision had been made, it did not make it easier to leave.  I set a time that we had to leave so that I would not keep putting it off.  Before we left, I had a little time for just Laurel and myself.  It was very difficult saying goodbye to Laurel and she and I had a little talk.  Well really I spoke to Laurel and she just listened.  I told Laurel I loved her very much and that I wanted so much to see her next Friday.  But I also whispered to her that if she had to go see God and I could not return before she had to go I would understand.  It just killed me to say it, but I could not leave without giving my daughter the reassurance that I love her unconditionally no matter what.

We have faith that God can heal Laurel.  But we also know that God has plans bigger than our plans and part of our faith has to be that we will accept God’s plan even if it does not match our own.  

“Faith is the assurance of things hoped for, proof of things not seen.”  Hebrews 11:1.

The staff at Children's began talking to Laurel early on about going to Camp Esperanza.  I remember the day Laurel told us that she was going to go to camp.  She did not ask us if she could go, she just said she was going. So to us Camp Esperanza symbolized what we all craved; a place where Laurel could just be a normal kid with other children who had similar experiences.

The first time Laurel went to Camp Esperanza she still had a central port and was still receiving anti-rejection drugs.  I could not believe that we agreed that she could go.  Laurel went that year and every year after that she was eligible.

It costs $500.00 to send one child to Camp Esperanza for a week. Please give to this wonderful cause.

To donate CLICK HERE.