The Journey

I HATE childhood cancer.

Well, I hate cancer in general.  And I hate all diseases, but especially ones that affect children.  Little people’s bodies ravaged with illness and owies that have nothing to do with who they are or things they have done. 

With that said, what I’m about to say (vent) might seem contrary to that so when in doubt while reading this, refer back to sentence number one. 

The other day, I was looking through Facebook and saw a picture of a beautiful little kid holding up a sign that said that this was the day of her last treatment.  That they were officially well and cancer free.  It’s a beautiful moment and I can’t imagine what it would feel like to have faced a dragon and to know you slayed it.  Wow!  What a great day.  And I’m happy for that kid and her family and countless other kids like her. 

 But I truly truly can’t imagine it! 

I chat with fellow moms often.  And we all have our own crosses to bear.  One mom was saying how she noticed that there are walks and ribbons and photos of “completed treatment” for kids with childhood cancers.  Their families are treated with such kindness (not always but as a general rule).  Their doctors see the tumor or whatever and they have medicines and they give those medicines and the tumors shrink.  The doctor feels good for doing his job.  The family feels grateful.  The kid goes home well.  Eventually they are deemed in remission. 

Now don’t get me wrong, this is NOT ALWAYS the case and I’m quite aware.  So I’m not talking about those cases. 

But many of the cases go just like I just described.  For these families, their lives go back to (almost) normal.  They probably have an appreciation for life like most people can’t.  They are thankful they survived this brush with death. 

So what’s my beef?  When you have a kid that has atypical things.  Or a child who hits the ceiling of people’s knowledge.  When there is no cure, medicine or treatment.  When what you say is happening has never been seen by that doctor before.  When your child likes to color outside of the proverbial medical lines.  Uh … we get treated differently! 

What do I mean?  Because what our child has cannot be seen by a blood test or MRI, then we might be making it up.  When the child’s symptoms don’t add up, we are accused of having Munchausen’s by Proxy syndrome and classified as wacko or even dangerous.   If the doctor actually ever does his job and starts to see we’re not making it up nor making our child sick, then starts the frustrating part of them not knowing what to do about it.  They often promise help but many don’t.  Time drags on and here we are at home hoping they are researching and connecting with other doctors, looking for a treatment or plan. 

Eventually we discover they haven’t.  They haven’t given my child a second thought.  Afterall, is that the best use of their time?  So we become great researchers.  We dig into the literature. (We’re told we can’t believe everything we read. Uh, duh.)  We learn the medical terminology (which a lot of doctors feel threatened with by the way).  We talk with other families (and we’re told that was unwise).   We become experts in knowing about our child’s unusual situation.   We take more and more of the responsibility of the care of that child on our shoulders. 

We often feel unheard.  Misunderstood.  Shelved.  Discounted. 

We know we are right.  And truthfully, we HATE being right.  I know that sounds ridiculous.  But if I am right … then my kid is REALLY SICK.  And I’d rather be wrong than to have a sick kid.  But often, by the time we come to the conclusion of a new diagnosis, we have poured over the literature and discussed it with fellow families.  We have done our due diligence and we KNOW we are right.  And that’s the hard part.  We PUSH for doctors to believe us, to prove us right, for a reality we don’t want!

Meanwhile, there’s that nagging doubt in our heads the whole time.  The who do I think I am to have figured it out when the doctors haven’t?  I didn’t go to medical school.  Doubt doubt doubt. 

But at the same time, we have come to rely on that Mama gut.  And that gut is rarely wrong.  So we DO rely on it.  And yet, at that moment of “Fight or flight”, there’s a horrible doubt. 

People have asked me my biggest fear.  And truthfully, I tell them, “It’s the one I miss.”

What?  See, I am in charge of MOST of Manny’s care medically.  I don’t just mean on the administering the care.  I mean the DIRECTION of the care.  I am in charge of what type of care. For example, currently, I am managing his TPN.  I am deciding what blood tests he needs to have, how often and what they mean.  Why?  His doctor wasn’t looking at this so I learned how to do it.  I have learned he needed carnitine, selenium and iron.  The doctors learned that? Nope.  I did.  But I knew to ask for these tests.  What about the thing he’s lacking that I don’t know to ask for.  THAT scares me.  The one I miss. 

It’s a horrible amount of responsibility.  And it’s exhausting.  Utterly exhausting. 

And the truth is … there will be no sign that says “Today is my last treatment”.  There is no end in sight.  There is no finish line.  There is only a finality that I’m not even willing to let my brain think. 

I feel like I’m running a race.  I see (Many, not all) childhood cancers like a marathon.  There is a marked path.  A typical race length.   There are supporters along the way.  There is a finish line with cheerleaders there.  They take your picture and say “Treatment completed”.  And most finish the race.  Some have to run another marathon. 

But our path?  It’s not marked.  There’s no path.  No road signs along the way.  Why? No one has ever run this race before.  We have no clue if this race is a month, year, decade, lifetime long.  So there is never an end in sight.  There are no supporters along the way, in fact we get lots of naysayers who offer unsolicited advice like if we just had more faith it would be over or if we just did x or y treatment then we’d be done.  Or we might even get the “why are you running at all” type of advice … afterall, he’s going to die anyway so why do you fight so hard.  We get questioned on quality of life.  There will be no cheerleaders at the finish line.  Why?  Because our finish line is when he takes his last breath. 

And like I said at the beginning … refer to sentence one.  I wouldn’t wish cancer or other illness on ANYONE!  I am not saying that any marathon is easy.  None should be compared.  Just saying, there are certainly differences. 

What’s my point?  Well, first I just needed to get that off my chest.  I guess I wish people (including medical professionals) would understand why moms of chronically ill, medically complex kids are so wacko.  Why we feel so desperate all the time.  What we are fighting for.  And how we came to be this way. 

Our road is long and our burden is heavy.  We know we can’t stop walking.  We must go on.  We know we can’t lay our burden down because no one else could pick it up.  We know we are the only ones who know how to fight for our kids but we second guess ourselves every second of every day, but we know it’s the best our kid has.  We don’t know if our journey is long or short.  But none of us want this journey to end.  We’re tired.  But we know we have to keep going.  We will never give up. 

I have made a promise to Manny.  As long as he wants to keep fighting, I will be right there fighting the dragon with him.  However long that journey is.