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+It’s been an eventful week. Barbara Bush, the wife of our 41st president went home on April 17th and her funeral was held at St. Martin’s Episcopal Church in Houston on April 21st.^[1]  First families from the Clintons on attended to show their respect and demonstrate that a person is not defined solely by their political affiliation.  Across the pond, two other momentous occasions occurred.  Prince William and Kate welcomed their third child and second son, Prince Louis.^[2]  In contrast to this joyous occasion, a battle was being waged over the life of another little one, Alfie Evans.^[3]

Before we discuss baby Alfie, let’s return to Barbara Bush.  Millenials will not remember her time as First Lady, but she was known as gracious and welcoming.  A friend of public education, she made literacy her cause while in the White House.  After leaving the White House, she and Bush Sr. spent much of their time in Houston and after she passed, many local residents shared fond memories of interacting with her.  She was friendly to everyone and loved kids.

Sixty-Five Years Ago in Midland, Texas

The part of her life that wasn’t often discussed in the many years she was in her public eye was not her famous sons, but the daughter that they lost.   When their daughter, Robin, was only three years old . . . Not much older than Alfie Evans . . . She began feeling tired and did not want to go out and play.^[4]  Concerned, Barbara took her to the doctor and the diagnosis came back.  It was a strange disease called Leukemia, one that not was much known about and for which there was no cure.  The doctor told the Bushes, “There is nothing that can be done, just take her home to die quietly.”

Today in Liverpool, England

Today in England, there is a battle waging over a little one named Alfie Evans.  Alfie’s parents took him to the doctor sixteen months ago after suffering seizures.  The doctors have not been able to diagnose the cause.^[5]  He had been in the care of Alder Hey Hospital during that time and the issue is the doctors have told the parents that there is nothing more that they can do for him; however, they refused to allow the parents to take Alfie to any other provider.

Alder Hey told the Evans the same thing doctors told the Bushes about their daughter, Robin, “There is nothing more we can do, make her comfortable, and take her home to die.”

The Fighting Spirit

Like the Evans, Ms. Barbara did not accept the doctors’ decree.  She was not just going to lay down and passively accept losing her daughter.  If there was any way, any solution, she would find it. She took Robin to Memorial-Sloan Kettering cancer center for experimental treatments and for eight long months, she watched her daughter go through the treatments and hoped for a cure.^[6]

Because that is what love does.  It never gives up.  It always believes.  It always hopes.

The stress and strain of those months turned Ms. Barbara’s hair prematurely white.   This time hope died.  There was no cure for Robin on this side of heaven.

It changed the Bushes as a family and it changed them individually.   Friends of the family, and Barbara herself, have said they believe this event was formational in shaping George W.’S personality.  He has said that he can still remember the day when they came home without Robin.  From that time on, he was there for his mom and always cutting up trying to make her laugh because she was so sad.^[7]

D-O-C does not equal G-O-D

Doctors have to face death every day.   They have to operate in reality and probabilities.  They know what is likely to happen, but they do not know what will happen.  They can be, and often are, wrong.

Today leukemia is not a death sentence.  It is a serious situation, but it is not now certain death.  Today, people with leukemia have a strong hope because there were doctors and researchers, parents, and patients who would not give up.  They determined to keep looking until a cure was found and leukemia beat.

Nothing changes without hope in action.

Alfie’s parents were told they could not hope.  They were treated as ungrateful and a problem because they wanted to keep searching for answers.  Who were they to challenge the mighty M.D.’s?

When the Family is Displaced

Alfie’s story is the same as that of Charlie Guard’s last year.^[8]  It will not be the last, and it is likely that another is going on out of sight of the media lens right now.   I do not understand why the government and the hospital had the right to determine Alfie’s treatments and superceded the rights of his parents.   Somehow children have become to be seen as property of the state rather than primacy given to the family.^[9]

Let us hope that confusion does not spread here.

A Word to the Weary:  Love Never Gives Up

Disease sucks, cancer is cruel, and sometimes our DNA betrays us.  We live in a time with amazing medical advances, but ironically, those advances also highlight our limitation as humans to “fix” things.

If you are in a situation where doctors have said, “there is no hope,” but you have hope still . . . Don’t give up.  Listen to that hope and remember that not only are doctors often wrong, but we have the Great Physician on our side.

I want to give you two examples from the lives of people that I know personally.  The first is Katy Hayes.  You may have seen her on a talk show or her story told in a magazine.  In 2010, she gave birth to her daughter, Ariel.  Four days later, she was admitted to the hospital with a rare strain of invasive strep A that attacked every organ of her body.  The doctors told her husband she had less than a 5 percent chance of survival.^[10]

There is a long saga on the blog her husband wrote during that time.   In the months fighting the infection and trying to stabilize her, her husband was told time and again, “There is nothing we can do, let her go.”  When no option was left other than quadruple amputations, many friends told him, “Let her go, she wouldn’t want to live like this.”

But he kept fighting because love never gives up.

According to the numbers and the research, she shouldn’t have made it. But she is here today.  With both arms and legs amputated, life is not the same and it is not easy.  I think she would tell you that there are many days when she struggles, not just with the loss of her limbs, but day to day life itself.  For anyone who resents support payments and believes that recipients live a life of indolent luxury, I think she would tell you that it isn’t easy for the truly disabled to live on disability payments.

It’s not the same, it’s not easy, but she’s still here.  Because of who she is as a person, her being here makes a difference in not only the lives of her family, but in others who have heard her story.

The second person is Joseph Stanton.  It was the first day of his vacation in the summer of 2010 before his junior year at Kingwood Park High School.  He was skateboarding and simply fell and hit his head.  This caused massive traumatic brain injury.^[11]

There are two reasons I tell you his story.  The first is to highlight the persistence and endurance of his family.  They do not give up.^[12]  Their hope is that new research in brain injury will discover a way for Joseph’s brain to heal and restore.  Their plan is to keep him healthy until that happens.

Just because there isn’t a “yes” today, doesn’t mean that there won’t be one tomorrow.

The second reason I mention him is because his family, and particularly his mother, has become a support and advocate for families of other patients with similar prognoses.  Her advice is never to settle for one opinion, get a second, and a third, and a fourth if necessary.

When it begins, you are overwhelmed with not only the situation, but words and procedures.  Her advice is to get a journal and write down everything the doctors and nurses tell you.  Document all the medication and procedures given.  It doesn’t matter if you don’t understand it now.  Write it down, and then you read, and study, and eventually you will understand it.  You will not only be an advocate based on love and hope, but one from the standpoint of knowledge and information.

Just because you don’t understand it all right now, doesn’t mean you can’t learn.

Never give up.  You hope and act until either there is nothing left to hope for or that hope is fulfilled.

Thankful for our Country and Medical Community

Today, I’m thankful for our country and our amazing medical community.  Yes, the records and finances are a mess . . . We have issues.  But right now, we still have the freedom of choice.  We don’t have to passively accept the dictates of a doctor or administrator.  It is not criminal to hope.

Let’s pray for our British brothers and sisters that they regain the right to persist . . . To believe.

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