“A Little Bit of Normal in My Life”

This isn’t going to be one of those fun and games posts, but when I started this, I said I was going to write about our cancer journey, and this is part of it.  There is a “culture”, if you will, in the world of pediatric oncology.  It is the same in the deaf community, in the Down Syndrome community.  We face a certain set of challenges.  We speak our own lingo.  We share the same hopes and dreams and fears.  We win together, and we grieve together.  We celebrate together.  We mourn the lack of funding, and we cheer as more strides are made in treatment for our kids.  And we bust myths.  So that , I think, is where I will begin.

When I was you, before I was who I am now, if I had even bothered to think about kids with cancer, which I didn’t, these are the beliefs I would have had:

1.  The “cancer ward” is a sad place.

No.  It’s not.  At least, not generally.  You see the posts now about kids riding trikes in the hall, riding their IV poles, and that’s part of it.  Mostly, describing it now, I would use the term “roller coaster”.  It’s home.  It’s life.  It’s mostly hopeful, but sometimes it feels hopeless, scary.  Because life goes on, only for our cks, it often goes on inpatient.  Our kids have ports and PICC lines and IVs.  They have fluids hanging.  It’s not unusual to see an IV pole with 3 or 4 pumps, 5 or 6 bags of stuff running.  Chemo, antibiotics, fluids, blood products. Yes, they ride bikes.  They do Build-a-Bear.  They do Zumba.  They do arts and crafts and build things and go to school.  Us parents form bonds, and we hang out in the kitchen, in the family room, at the nurses’ station, in the hallways.  The nurses and CNAs know our kids’ food preferences, sleeping habits, favorite songs, and the best way to get oral meds into them.  They are family too.

2.  Pediatric cancer is a death sentence.

No, it’s not.  Not any more.  There are no guarantees, but it’s not a death sentence.  When Ryan was diagnosed, my first question to our pediatrician was “Is Ryan going to die?”  He said no.  Confidently.  He said “He’s not going to die, but this is going to be the hardest thing you’ve ever done.” And so far, he’s been right on both counts.  The misconception is this: cancer kills kids.  No. It is mostly NOT the actual cancer that takes our babies.  It is the side effects.  Allow me here to leave pediatric cancer in general and focus on Leukemia:  Leukemia is a blood cancer.  Lymphocytes develop incorrectly and then they go rogue, first filling up the bone marrow, and then overflowing into peripheral blood, thus crowding out platelets, red blood cells, neutrophils, monocytes, all the good cells.  The only way to treat blood cancers is to attack the rogue cells. Unfortunately, and this is the tragedy right now, the only way to kill the rogue cells is to wipe out ALL of the blood cells, thereby leaving our kids completely immuno-compromised.  Basically they have the immune system of a newborn, premature baby. They are left susceptible and wide open to infections, and this is one of the ways lives are claimed.  Infections take hold, and sometimes the immune system coupled with interventions just is not enough.  Additionally, the chemotherapy can cause anaphylaxis, major organs are compromised and shut down, and any number of other things can go wrong.  It is here that we face our biggest dilemmas:  what are our kids allowed to do?  It is a very personal decision, and one many parents agonize over.  The message boards overflow with this topic in the summer.  Pools?  Hot tubs?  Parties?  For me, it was easy.  Ryan does what Ryan wants.  Ryan gets to live his life, however much of it he has.  Nothing is guaranteed anyway, and it is more likely that I will get hit by a bus than that Ryan will die because I let him swim.  But this is the crux of the culture. Parents of kids with Leukemia live for and by the data.  We get weekly blood draws that tell us the ANC (how strong the immune system is this week), Platelet counts (how likely are they to bleed to death if they fall off the camel, have a nosebleed, or get scratched by the dog… Sorry, I was starting to depress myself, humor is necessary), and hemoglobin (red blood cells carry oxygen, and if HG is low, our kiddos are more tired and their heart rates elevate).  So we leave clinic each week clutching this week’s results, and we make decisions.  Ryan gets to swim. He gets to go to church and Bible School, to the playground.  He got to go to Peter Piper when his ANC was zero because it was his brother’s birthday, although for any other occasion, we’d have rescheduled that one.  Cancer moms know what it means when there is an event and another mom says “Oh, I think we will have to skip that, it’s a Dex week”.  That translates to “We are housebound because every time someone looks at my child he screams bloody murder”, or “I have to run to 8 fast food restaurants to find the exact combination of food my kid wants”, or “I just bought 27 pounds of bacon”, or “my child is sleeping 18 hours a day”.  Cancer moms know that Dexamethasone, and to a lesser degree Prednisone, was developed by Satan himself.  And they don’t want to party with their own Dex kid, let alone mine. So they (gratefully) accept a rain check.  I was once criticized by my brother-in-law for missing family events.  He just didn’t believe that Ryan’s issues were for real.  So rather than say “**** you”, I decided to take Ryan to his grandson’s birthday party.  20 minutes in, Ryan was on the floor, throwing a screaming, raging fit.  Too much noise, too many people, too much activity. I asked my brother-in- law to pick Ryan up off the floor for me, then I took my child, walked out the door, and have not spoken to my brother-in-law since that day.  Some cancer parents lock their children down, don’t let them do anything.  They live in constant fear.  Some look for a middle ground. Some evaluate every activity.  When cancer moms are together, we keep an eagle eye on all of  our kids’ energy level, color, bruising time, clotting time.  At the hospital, we know each other’s primary doctors, which nurse has which kid every day, and often which kid is neutropenic and supposed to be WEARING A MASK, RYAN!!!!

3.  Pediatric Cancer is well funded.

No.  It’s not.  It’s woefully, tragically, unfairly and unreasonably underfunded.

4.  When children do die, the rest of us are unaffected.  

This is the biggest tavestry of all.   When a child earns their wings, we ALL grieve, and we ALL suffer from survivor’s guilt. Our heart breaks EVERY TIME.  It doesn’t matter if we knew it was coming, or if it was sudden. Don’t tell us to mind our own business, or to be grateful we have ours, or that we are too involved.  This is why:  I spend more time with the children and families at the hospital  than I do with my own family.  Also, because the next time it might be MY kid, and don’t you think for one second that I believe mine is exempt.  The next child’s life claimed could be Ryan.  I live with that.  I have to. We cry in each other’s arms at midnight ( what, you think we SLEEP at midnight…no, we all are awake for midnight vitals!), we are in the kitchen getting coffee at 5 am (well yeah, 5 am, because our kid didn’t go back to sleep after 4 am vitals and labs), we know when there is a new diagnosis, because that is WHAT WE LOOKED LIKE WHEN WE FOUND OUT…WE WERE THEM.  Privacy is thrown to the birds.  We do it all together…laugh, cry, pray, celebrate, and grieve.  We say to you “YOU DON’T KNOW HOW I FEEL RIGHT NOW!!”. You CAN’T know, and we don’t WANT you to know.  We aren’t being mean, we would not wish this on our very worst enemy.  We will close ranks, protect eachother, take care of each other.  It isn’t because we don’t trust you, but that we have traveled somewhere very dark and scary together, and there is not always a good reason to drag you there too.

5. I am somehow stronger than you. You don’t know how I do it.

Easy.  I have to.  Ryan’s life depends on me DOING IT.  You would do it too.  The alternative is much worse.  Please don’t say those words to us, particularly if you are a mother.

I spent 3 hours today with Ryan and Nathan (and Nathan’s brother Michael).  Nathan and Ryan are both relapsed CKs.  And so they got too tired.  And too cold.  And weren’t too hungry. But doggone it, they swam.  And blew bubbles. And played in the grass.  And loved on Baxter.  And ate corn dogs.  And swam some more.  We had NORMAL today.

And I managed to NOT get photobombed by Michael when I was taking selfies with the dog.

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4 thoughts on ““A Little Bit of Normal in My Life”

  1. WWWWWWWOOWWW! I currently have an extremely high number of different emotions running at the moment for every bit of everything that comes with your writings. For lack of being able to find the right words, for right now I will say I AM UNBELIEVABLY PROUD OF YOU, MY DEAR PULITZER PRIZE WINNING FRIEND! You gotta take it to the next level.❤

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