Round Four.

Welcome.  Welcome to the Cancer Unit at Riley Hospital for Children.  This sign greets us each time we are admitted to Riley for our inpatient stay.  The fifth floor.  Floor five.  The cancer unit.  Sam is admitted to the hospital to this floor for one night each six weeks when he begins a new round.  We were just there Tuesday, January 26th when he began his fourth round of chemo.  Sometimes while we are there and Sam is receiving his big chemo, I have walked the hallways and said to myself, “How in the world did we end up here?”  And I know for sure the other parents who are there caring for their child on floor five must have said the same thing at some point.  This just wasn’t in the plan.

This reminded me of an article my good friend Kathy shared with me awhile back.  Kathy, whose daughter is the same age as Sam, is a mother of a special needs child and even though the article is written with that in mind, it can easily apply to families dealing with a child who has cancer.

Holland

c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

After Sam’s surgery, after the pathology report , I too felt like we had landed in place like “Holland.”  We also received our very own guidebooks.

These “guidebooks” introduced us to all sorts of new vocabulary such as aplastic anemia, lumbar puncture, neutrophilis, neutropenia, petechiae (pet-eek-ee-i), ports and other new words.  Yes, it did feel like we were learning a new language, and our seven year old was learning the lingo too.  We became experts on administering IV fluid bags at home complete with flushing the line and heparin injections, keeping track of his platelet & white blood cell count, his HGB count and his ANC number.  We learned all about different medications and attended more doctor appointments in just a few months than I bet some people do in a lifetime.  No this wasn’t a place that we had planned to visit.  It wasn’t even on the radar.  But it is where we have “landed” and we do our best to win each day, one day at a time.

Do not worry about tomorrow, the troubles we have in a day are enough for one day.

Matthew 6:34

(isn’t that the truth!!????  Geesh!)

One thing that is important when you are in “Holland” is HOPE.  That is what keeps us going.  Sometimes when I talk with people and they learn that I have a child who is going through chemotherapy for brain cancer, they often ask, “What is the prognosis?  What are the statistics?  What are the doctors saying?  Is he going to make it?”  I never quite know what inspires someone to ask such a question.  Perhaps they are uncomfortable with the conversation and really just don’t know what to say.  But what if when asked that question, I was forced to respond in a way that would make my heart ache ten times more than it does now?  Then what would you say?  There is no proper way to estimate somebody’s chances, and we shouldn’t try, because we can never be entirely right, and it deprives people of something that keeps them going, and that is hope.

But if we hope for what we do not see, we wait for it with patience.

Romans 8:25

(patience is not my strong point, but I am working on it!  I think this has been one of my lessons.  :))

Round four.  We are in the middle of round four and have two more clinic visits before his three week rest period.  This is Sam’s halfway point.  Four more rounds and he will be finished with treatment.  Some days it seems treatment is flying by and other days it feels like this has been the longest eight months of our life.  Before round four began, Sam had his usual kidney and hearing test.  The tests showed a slight dip in his kidney and hearing function in the high frequency tones (like dog whistles-who cares!) not conversational speech.  Because of this, they dialed back the dose of one of his chemo drugs that he receives during his inpatient stay by 50%.  This seems to happen quite often with children receiving this particular drug and they like to error on the side of caution to protect his hearing.  Most men I know don’t hear very well anyway, right ladies???!!   Just kidding guys…kind of.  :)

Sam doing a little computer time while in the hospital.

Doing a craft from Childlife Services.  This division of Riley is amazing and so generous!  Each day they come around asking if the children would like to paint, color, do a craft, play with clay,  and other fun artsy things.  It really helps pass the time and I’m sure all the kids love it!  I know Sam sure does!

Sam feeling pretty good after chemo!

Thank you, once again, for your prayers. We are humbled and grateful for each and every one.  It seems like almost every day we hear of someone who is praying for Sam and that always warms our heart.  Without your love and support and our faith, our journey would be that much harder.  And for those of you looking for something to do in addition to praying, stay tuned for more information in the next few days!  We’ve got some wonderful suggestions and opportunities in which you can participate that will directly benefit the children fighting this horrible illness.

Until next time,

Erica

xoxo