Chromosomes, Cancer & Kids

Death Panels & Toxic Pee

Since I've been through end-of-life counseling twice I feel like I can speak up. 

Allow me to avoid the politics and controversy and cut right to what it's like where end-of-life discussions are "between a patient and his doctor". 

Where life and death and quality of life decisions are made.  Where fortunes and sanity are on the line.  Where heartstrings are wrenched.

During Josh's first chemo treatment, he was still recovering from bone surgery in his right thigh.  He couldn't put any weight on his leg so he had to sit on the edge of the bed and use a urinal.  I helped with that. 

He wasn't a very good shot. 

After two days I started getting sores on the back of my hands.  I mentioned this to a nurse.  She asked if I were wearing gloves when I helped Josh pee.  I said no.  Said said that the chemo drugs are like a powerful solvent and that I needed to protect my skin from his urine.

That's the stuff they put into our kids' bodies.

Nothing was going right with Ben's leukemia treatments.  He should have been in remission after 5 days.  It took 3 weeks.  The side effects and complications of the chemotherapy started almost immediately.  The doctors quickly decided to reduced his chemo doses to 75%.  A couple months later, they were reduced to 50%.  Meds to counter the pain, infections, nausea and other symptoms continued to mount.

Three months into treatment we were exhausted from being in the hospital and asked to be trained to treat Ben at home.  Managing this was a daunting task.  I organized Ben's weekly regimen on a spreadsheet.  When I gave it to an oncologist to verify it, he was physically startled at all of the meds.  The chart below is for one week in August 2007.

This was actually an easy week.  When Ben had intense infections, he would sometimes be on two different IV antibiotics and IV nutrition that had to be administered on screwy schedules around the clock.  The whole family moved around like zombies.

This is a picture of what the chemo did to Ben's mouth.  Chemotherapy drugs are designed to kill fast growing cells like cancer. 

They also kill other fast growing cells like the lining of the mouth, esophagus, stomach, intestines and, of course, hair follicles.  This is at a 50% dose.

That's when the six oncologists had a meeting.  They were divided 3 and 3.  One group wanted to intensify Ben's chemo.  The other wanted to stop chemo and focus on pain management. 

It was interesting that the 3 who wanted to go full steam ahead were the younger group.  Their hearts were in the right place.  For 2 of them, I think they couldn't bear to fail our family.  They helped us through Josh's situation just a year before and intensely didn't want us to loose another son.

The sentiment of the three older physicians was expressed best by one who said, "We've done enough to this boy.  We need to leave him be." 

Nancy and I thought and felt that they were right and we ended chemo therapy.  We knew that Ben would relapse and that he couldn't tolerate treatment any better at relapse than he was at that time. 

We knew that Ben would die.

Mercifully, Ben died a peaceful death from complications of the chemo rather than relapse.  (see The Most Tender Mercy)

These were awful decisions to make.  They were made with God, family and our friends - the oncology team that loved and cared for Josh and Ben and the rest of our family.  I can't imagine having the government involved in that sacred trust.
 

Mommy! Help Me!

Ben was pretty much non-verbal.  Ben's first sentences, turned out to be his last, spoken a few hours before he died. 

When Ben had been with us about two weeks (a six-year-old with Down syndrome from a Korean orphanage),  I took him for his special needs evaluation with a school district psychologist. 

It was a pretty grueling hour or so.  The very fresh, young doc was frustrated with the difficulty he was having getting Ben through the paper work.

He tried to get Ben to point to pictures when he named them.  I explained - again - that Ben was Korean and did not speak English.

He gave Ben a pencil to write his name.  I explained - again - that Ben was Korean and did not speak, or write, English.  I asked the doc if he could read Korean, because if Ben were to write something down, one of us would need to translate it to know if it were correct.

So the doc asked him to point to the letters in his name.  I pretty much thought that had been asked and answered. 

At last, after all of the forms and tests had been attempted, we could go.  But the doc stopped us on the way out to give Ben a bookmark and explained it had 10 things that Ben could do to help his self-esteem.  Oh, brother.

Ben eventually learned our names.  He had a few words he picked up over the years, but not too many.  He did learn enough sign language to communicate his basic needs and wants.

Big sister Alyshia taught him how to say, "Spank your butt!" and he would say that whenever he was mad at someone. 

After he got leukemia, he learned "morphine" and his new battle cry, "Go away cancer!" which came out "Gagawhy canka" - shouted with his fist in the air.  But he had never strung together a sentence of his own.

So I tell you this, because Ben was never able to say he loved us.  He would sign it.  And when the love would overpower the autism, we would get some hugs.

The night before Ben died, we went out to dinner.  He started to get uncomfortable during dinner.  When we got home he was in a lot of pain.  We gave him all the morphine we could.  It wasn't enough.

Finally, he cried out, "Mommy.  Help me!  Daddy.  Help me!  Natalie!"  We were shocked, proud and panicked.  We called the hospice nurse and she came out to up the morphine.  A few hours later Ben fell asleep and later slipped into a coma, never to awake.

Recently, Nancy and I were watching an episode of ABC's Extreme Makeover Home Edition.  Featured was a family that had adopted 6 special needs children from China.  They showed several of the children expressing their love for their parents.  Their gratitude for a real life, away from the orphanage.  The chance to be loved and to be part of a family.  One said that her parents were her heroes.

Tears ran down our faces as we both realized that if Ben had the power, he would have said the same things.  Someday, he will be able to express himself and we'll hear what he has to say.  Until then, we'll treasure those few simple, last words:  "Mommy.  Help me!  Daddy.  Help me!  Natalie!" 

I Missed the 1st Lap

Two years ago, I pushed Ben's wheelchair on the first lap of the Relay For Life - the Survivor's Lap. 

Nancy, Natalie, Aaron, Sadie and I walked with Ben, who was clinically in remission with Acute Lymphoblastic Leukemia (ALL).

This year, as we stepped on the track to support the American Cancer Society's Relay for Life, Nancy and I were unexpectedly overcome.  We struggled to check in and had to take a few moments to catch our breath and regain our composure. 

This year, there would be no Survivor's Lap for us.

Every summer, in communities all over the world, there are Relays to raise awareness and money for cancer research and support programs.  Relay Teams start with the 2nd lap at about 6:15 p.m. on a Friday and walk through through the night until noon or so Saturday.

The American Cancer Society's slogan is "Celebrate. Remember. Fight Back."

Celebrate

At the Relay, we celebrate those who have survived cancer.  We line the track and cheer the survivors in their purple shirts as they take a lap. 

When I was in 5th grade, my friend Kevin was diagnosed with leukemia.  Back then, there was little they could do.  He was gone in a matter of weeks. 

Now some forms of childhood leukemia have a 95% cure rate.

We have a lot to celebrate.

Remember
At the Relay, we remember those who did not survive.  We decorate luminaries that line the track and give light through the night.

Here is Sadie sitting between Josh and Ben's luminaries.

Some Relay events will also read the names of those remembered or project a slide show at night. 

We don't need an event to remember our lost loved ones.  We never forget.  But there is something healing about remembering with others.  Others who are missing their grandparents, parents, aunts, uncles, cousins, brothers, sisters. nieces, nephews, husbands, wives, friends, sons and daughters. 

Fight Back
More Celebrating and less Remembering means a lot of Fighting Back.  And that takes money.  The Relay Teams raise donations from their friends and family.  Businesses donate food and other goods to be sold at the Relays to raise money.  Teams have booths and games to raise money.

This year, our family was recovering from the flu, so we weren't up to relaying and just stayed a while.  But those who stayed survived a horrendous thunderstorm that literally blew down all the campers' tents and the booths.  They took shelter in the high school gymnasium and went back to rebuild after the wind, hail, lightening and rain had passed.

We went back for a few hours Saturday morning to the carnival and booths.  Our team had a photo booth with cardboard cutouts of celebrities, costumes lent by a local theater company. 

Aaron did his best Edward Cullen (of Twilight) impression for the kids.  And they were in charge of the hamburger and hot dog BBQ.

Sadie enjoyed bouncing in the inflatables provided by the Army.  And you need to check out the very cool face painting by professional make up artists.

Chances are, there's a Relay for Life in your area.  Even if you don't want to get involved with a Team, plan on dropping by and spend your lunch money in the cause of Fighting Cancer.  Bid in a silent auction for a gift basket.  Watch the magicians and enjoy the bands.

We'll be there every year.  And if you want to know more about the Relay for Life, or want to make a donation, click here.

Celebrate more, Remember fewer!

The Most Tender Mercy

When you hear of someone dying of cancer, how they actually die doesn’t really occur to you.  The mechanism is different depending on the cancer.  With leukemia, the bone marrow produces cancer cells called blasts.  If blood volume contains less than 5% blasts, you are in remission.  Higher, and the cancer starts crowding out other components of the blood.  This causes a great deal of pressure in the bones.  The pain is excruciating.

 

 

As the amount of red blood cells drops, the blood can’t transfer oxygen around to keep the organs functioning.  Platelets are what allow blood to clot.  Not enough platelets and the blood vessels can no longer contain the blood.  The patient bleeds out: internally and externally.  For this reason (and others), transfusions of whole blood and platelets are routine during treatment.

 

 

Josh

When Josh relapsed, his blast count started to rapidly rise.  His hospice nurse explained the situation as we discussed where we wanted Josh to die.  The concern was that it could be very traumatic for the family if he were to bleed out at home.  We wanted Josh to pass at home rather than at the hospital.  In order for this to happen, he would have to have frequent platelet transfusions.  The hope was that the last one would come close enough to when he died that he would not have to go to the hospital at the end.

 

We prayed for two things: that Josh would be able to pass at home and that we would be with him. 

 

Josh was scheduled for a transfusion on Tuesday.  He wouldn’t go 45 minutes away to the children’s hospital where he had been treated.  He said he was done, “No more”.  We arranged for some platelets to be delivered to our community hospital.  We could forgo the usual precautions of irradiated platelets because the risk of catching something from the platelets was irrelevant. 

 

The platelets hadn’t arrived.  They told us it would be too late to get the transfusion done before they closed the IV lab for the day.  The platelets would expire before morning so we would have to try again Wednesday.  We got a call at 4 saying that the platelets had arrived and if we could get there in 10 minutes they would administer them.

 

We, shall we say, made good time and got the transfusion done.  We went home and had a little party.  That evening was Josh’s last extended period of lucidity.  If he hadn’t gotten that transfusion, he would not have been able to remain at home.

 

 

Ben

During the course of Ben’s treatment, he became allergic to blood products.  One transfusion nearly killed him.  After that, we had to use special washed whole blood (to remove antigens) and load him up with steroids and Benadryl before a transfusion.  Platelets are too delicate to survive the washing process, so he could no longer have platelet transfusions.

 

We were talking with a friend about our concern that Ben would have to pass in the hospital because he couldn’t have platelets.  She said, “You can ask Heavenly Father to take care of that.  He loves you and will give you that gift.  Just ask.”  And ask we did.

 

When Ben’s time came, he died of complications from the chemotherapy rather than the leukemia itself.  He was able to be with us at home.

 

 

 

Tender Mercies

Father asked for His boys back.  With very imperfect faith, we submitted.  As the months, and now years, pass, we yet stumble in our acceptance of His will.  Sure, there was nothing we could do to stop them from dying – we spent ourselves trying.  But how we feel and think about them leaving is up to us.

 

 

Asking for help doesn’t come easily to me.  Unfortunately that extends to my Heavenly Father.  That in spite of my inclination as a father to help my children.  I’ve read that the most oft repeated commandment in scripture is “Ask”. 

 

 

It helps me to think on His tender mercy in making it so that we could hold our boys as they left their bodies behind and were received by Him.  I feel loved and blessed and grateful when it would be so easy to feel cheated and bitter.  I don’t think my recollection of those final moments will ever fade.  I hope the sacred feeling I was privileged to feel will remain as bright.

It's been a year

Ben died January 25, 2008.  I remember him differently today than I did a year ago.  This time last year all I could think about was the little boy who, more often than not, was crying in pain, begging for morphine, unable to sleep.  His little body wrecked by the chemotherapy.  The smiles and laughs didn’t last long or come often enough.  I was happy for his release and thankful that his pain was gone.

 

Today, the nine months spent fighting cancer blends into the six years he lived with us.  I remember the happy, impish boy that kept us on our toes and wish he could be here.  Life is too quiet. 

 

Time hangs around us like a small child in his father’s overcoat – we just can’t fill it.  Sure, there’s plenty to do – important stuff, fun stuff.  There’s more to do than we have the time for; but time has yet to be as satisfying as when Ben and Josh were with us.  We just can’t fill it.

 

So I’m melancholy today.

 

It’s been a year.