Chromosomes, Cancer & Kids

You Can Go Back Home

Early on the morning of July 22, 2003 I woke to a phone call.  The man said that my family had been in a rollover accident near Kearney, Nebraska.  He said that one of my boys had been thrown from the car and "didn't make it." 

I immediately thought it might be Josh and asked him if it was an 11-year old with Down syndrome.  He said yes.

He called back several minutes later and said that as the paramedics were working on Josh, he suddenly sat up and "darned if he didn't look half pissed about it."

The story of the accident - and the miracles surrounding it - will have to wait for another post.  Here I want to talk about Josh's experience.  He told us about what happened to him, using his usual combination of words and sign language.  First he told us of angels in white that flew him out of the window of the Suburban and laid him on the ground.

He said that he went to a place that was all white and that he saw his "Dad in Heaven".  Josh said that he wanted to stay, but his Dad told he had to go back, that his mom and family needed him.  I don't know what you think about accounts of near death experiences, but I can tell you that this 11-year old with Down syndrome hadn't been unduly influenced by media reports.

I was thinking the other day about how when Josh relapsed and knew he was going to die that he wasn't afraid.  Not one bit.  He even seemed to be looking forward to it.  I was thinking that I don't want to die - just not ready.  But Josh was.

Of course, Josh was as sweet and pure and anyone I've ever known.  And he didn't have any of the regrets that most of us carry with us.  But I think Josh's experience nearly four years before had prepared him.  I think he remembered how he felt when he had his visit with his Dad in Heaven.  I think he knew how absolutely wonderful it would be to once again be bathed in his Father's love.

Good to go home.

Field of Hope

Field of Hope.  Funny way to describe a cemetery, but that's what I felt - Hope.  It was Christmas Eve, about 9:30 in the evening.  We were dropping by the boys' graves to leave some candles. 

As we drove through the neighborhoods on the way, we saw families gathering at grandpa and grandma's.  You know a half dozen cars in the drive, people carrying gifts, lots of smiles.

I expected we'd be the only ones at the cemetery at that hour, but there were a lot of other visitors. 

Most of the graves had been decorated for weeks.  This was people wanting to spend part of Christmas Eve with their departed loved ones. 

We would pass them in the snow, exchange a quiet "Merry Christmas".  Acknowledging a shared pain.

But there was more.  The cemetery was aglow with hundreds of candles and luminaries.  Each one carefully placed and individually lit.  After we tended to Josh and Ben's graves, we drove through the rest of the cemetery. 

I felt as though the lights represented our desire to remain connected with our loved ones.  More than a desperate longing, but a symbol of hope that we would be reunited.

Hope that some bright morning we'll all be together again. 

Hope has become a pretty watered-down word these days.  "Hope you have a good time :)" 

When the scriptures use the word hope, it's not a meek and mild term. 

"A perfect brightness of Hope"  "Hope in Christ"  "Hope of Israel" "Abound in Hope" "The Comforter filleth with Hope". 

It's real, it's powerful and it comes from God.

A field of Hope.

What would Josh do?

There they were, 5 very tough looking guys, pants almost falling off, long hair, knit caps - the kind of guys dads keep their eye on.  They were playing video games in the entry at Wal-Mart. 

Nancy and I bumped into some old friends on the way out and stopped to chat. 

Steve and I were keeping watch when Josh just walked up to the guys and said, "Hi, I'm Josh.  What's your name?"  We took a step towards the group, but could sense that there wouldn't be any trouble.

As we visited, we saw the young men start to warm up to Josh.  Pretty soon they were feeding him quarters and cheering him on as he played videos games with them.  Then they moved on to the Crane where you try to grab a stuffed animal.

When it was time to go, they told Josh goodbye.  We were in the parking lot, almost to the car when we heard someone shout "Josh!"  I saw the guys running full tilt towards us.  I thought, "OK, here it goes."  But I was wrong.  One of them had won a stuffed animal on the Crane and they wanted to give it to Josh.

Now, I'm trying to be like Jesus.  I admit to falling far short almost all of the time.  When I saw those guys, I wanted to give them a wide berth and hoped to have no interaction.  I was looking at them through my eyes. 

Josh saw them quite differently.  I couldn't help but think of when Jesus was criticized for mingling with "publicans and sinners". 

What difference did those few minutes with Josh make in the lives of those young men?  What did it feel like for them to selflessly give?  How did they feel as their evening went on?  How long did the feeling last?  Do they still think of it now, as I do, five years later?

Josh was always very attuned to people's feelings.  He could sense hurt, sadness, fear - and he would unhesitantly approach and ask how you were.  And then you would get one of those patented hugs that made everything all better.

Looking back, I feel like I had a "cheat" for 15 years.  Anytime I felt down or troubled in any way, I would get a cuddle from Josh.  Woes just melted away, replaced by warmth and peace. 

It was so easy and so good.  Where can I find that peace?

Of course, we know where we can turn for peace and solace.  It comes from the same source as Josh and is given just as freely. 

Why is that so hard for me to remember?

Dad, Am I Going to Die?

What a question for a 14 year-old boy to ask his father.  And what a terrible question for a father to have to answer.

Josh's final round of chemo was what is know as the "intensification" round.  Chemo is given back-to-back without time for the body (and hopefully the cancer) to recover.  It completely decimates the immune system.  Josh was very vulnerable.  Rather than being able to go home after a couple days, it seemed like everything that could go wrong did.

Over the course of the next several weeks, Josh's kidneys began to fail.  Fluid built up around his heart (congestive heart failure).  Intestinal infection, emergency surgery to clean out an aggressive sinus infection.  Even chicken pox.

The scariest part was the respiratory distress.  Josh's lungs were infected and filling with fluid.  The pulmonologist told us that he did not want to intibate him (install a breathing tube) because he was afraid Josh would never come off of it. 

The message was clear - put Josh on a respirator and he would likely die on a respirator all too soon.

We took turns keeping oxygen flowing on Josh round the clock.  When that wasn't enough, he was put a on a bi-PAP machine that forced air into his nose and mouth through a mask. 

Josh was miserable and we were medicating him as much as we could without actually sedating him, hoping that he would keep the bi-PAP mask on.  Every time he would wake up, he would rip off the mask and it took too much precious time to get him to wear it again.

We finally got to the point where he would have to be sedated to keep the mask on so that his lungs could heal.  That meant leaving the cancer floor and moving Josh to the Pediatric Intensive Care Unit (PICU).  To us as a family (and the staff on the cancer floor) this was a very big decision.  We had all seen too many children go to the PICU and never come back. 

Josh's fever was 107 degrees and his blood pressure was tanking.  We had a meeting with the oncology doctors and nurses and decided that if Josh were to have a chance, we needed to move him to the PICU.  We were all in agreement that Josh was to be kept on bi-PAP and not intibated.

Our oldest son, Jon, called and said that he had been having a dream about a blessing for Josh.  He asked if he could come and pray over him.  In the blessing, he told Joshua that his time was short, but it was not now.  That he would return home.

We transported Josh downstairs to the PCIU and it was like entering another world.  Within minutes they said they wanted to intibate Josh and the fight was on.  The docs down there are called Intensivists.  That's an understatement. 

We were derided and browbeaten and accused of withholding care because we would not consent to intibation.  On the third day I insisted on a patient care meeting: get the oncologists, the infectious disease doc and the pulmonologist together.  We would abide by the consensus.  Sanity prevailed and intibation was taken off the table.

During the nine days Josh was in intensive care, he was heavily sedated with medication that prevents the patient from remembering the traumatic PICU experience.  I was sitting with him one day when he became conscious.  It was the only time he was lucid during his PICU stay. 

It lasted about 10 minutes.  He hoarsely called me.  I went over to his side and hugged him.  He said, "Dad.  Am I going to die?"  I told him with all the conviction I could, that no, he wouldn't die now.  He would come home for a while.  We talked quietly for a few more minutes before he went back to sleep.

Thank God for answering our prayers and giving us faith in Jon's blessing.  We had six more months - six wonderful months with Josh. 

Truth on a Refrigerator Magnet

There are a lot of magnets on our refrigerator.  I honestly don't where they come from, but there they are. 

"Life is not a matter of milestones, but of moments" reads one that struck me today.  When Josh was born with Down syndrome, we were told not to worry about the usual milestones but to just take him home and love him.

And we did.  Those milestones that every parent looks for were greatly delayed and hard won.  Some never came.  The hopes and dreams parents have for their unborn child had to be changed.  New destinations, new paths, new successes. 

But there were the moments.  Moments to fill you and hold onto forever.

I've been thinking a lot about milestones.  Our Natalie is getting married next week - that's a big one.  Natalie and Nate's union will not only get the blessing of the state, but for us and them, it will have special religious significance as well.  We believe that family can extend beyond our days on earth. 

That belief guides our behavior as we do all we can to build a love that can carry into the eternities.  The wedding ceremony is an important symbol of God's promise that he will bind our hearts together forever if we honor our commitments.

Josh and Ben missed out on a lot of milestones - some because they had Down syndrome and others because they died so young (ages 15 & 12).  Not just developmental milestones, but milestones that are important in our religious beliefs.

We believe in baptism at an age when a child has a sense of right and wrong and can be accountable.  Josh was a high-functioning child and was baptized at age eight and took on responsibilities in our lay ministry at age 12.  Ben, on the other hand, had a developmental age of 18 months or so.  During his life, he remained unbaptized in his innocence.

It's our belief that baptism and other ordinances can be bestowed posthumously.  So this week, Aaron will serve as proxy for his brother Ben's baptism.  My son Jon & I will serve as proxy for Josh and Ben in other ordinances they were not able to do themselves while they were alive.

Life is not a matter of milestones, but of moments.  These are sweet moments indeed.

 
Aaron, Jon, Josh & Ben at Jon's wedding reception, 2005