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. 

Why does this make me cry?

There has been a lot to say lately and I’ve even attempted to write blogs about the latest happenings but …  (Let me back up)

One of the great things about going to the hospital so often is that we become friends.  We want to see more about each other’s lives.  We start to share emails and phone calls.  We become friends on social networking sites.  Etc. 

So my blog used to be just random “Reflections”.  Random thoughts or experiences or feelings.  I rarely would edit myself.  I would say what was on my mind and heart and just put it out there to the Universe.  Now, I tend to be a fairly kind and diplomatic person.  I tend to try to say things from a positive point of view.  I also believe it’s not ever a good idea to put something in an email or blog or text that you wouldn’t say to the person.  So with those general guidelines, I would just write my blog. 

But now?  I feel guarded.  I feel like I have to be super careful.  So careful that I’ve said nothing.  And that leaves me with no place to put my thoughts and feelings and reflections.  (Well, I guess I’m reflecting now.) 

Not sure how to rectify that because I know I have things I want to say.  There are questions you probably want to ask (but don’t want to pry). 

So where does that leave me?  Unchartered territory. 

I will TRY to continue to put down my feelings and thoughts.  I will try to do it with dignity and grace.  I will try to do it with kindness and mercy.  But I will again start to share the story of what is going on with us. 

So with that in mind … 

We got home from the hospital in late December.  He had another unexplained fever.  With those, we have to treat it like it’s a line infection until proven otherwise.  It was ruled out and we went home. 

I already wrote a post about how torturous that hospitalization was in this post: http://destinyshousechurch.blogspot.com/2012/12/discharged-now-what.html

Several weeks have passed … we have done NO feedings.  And he’s GREAT.  No coughs, no breathing troubles.  Nothing.  I feel a huge weight lifted off my shoulders but it’s looming.  I have made all these decisions with just my pediatrician.  The GI does not know we have stopped the feeds.  The GI thinks I am scheduling with the surgeon’s office and am continuing the feeds. 

Meanwhile I have been connected with the Palliative Care Team.  Now before you go and get all confused, this does not mean what you probably think it means.  They also deal with complex and long term care.  THAT is the reason we are with them.  They do a wholistic approach to medical care and that’s what I needed.  The Doctor was great and said we needed a Care Conference set up.  We have been waiting for that conference.  As of today (1/18), it’s been 5 weeks since the idea was first brought up and no meeting yet.  So I felt like I was in limbo.  It delayed the need for the surgery consult but it also means I’m flailing on my own out here with GI decisions. 

Yesterday, I contacted the Palliative Care Doctor and asked how to proceed.  As I wrote him, I was in tears.  Clearly, the whole conversation struck a nerve.  I’m NEVER in tears over this stuff … except I realized that back when I wrote the last post, I was crying then too.  So I’ve just been on “pause” with the emotions of it all and while I started to talk about it again, I tapped the same emotions. 

The PCare Doctor called me and thankfully by then, I had my emotions back in check.  I was having a hard time saying what I wanted.  The whole situation has gotten to be a huge mess!   No answer seems like a good one. 

After all was said and done and the proverbial dust settled, I was able to sort out why this is so hard.  And it’s complex and too much to really share here.  But one piece I will share. 

Bottom line … without Divine Intervention (which we’re praying for), Manny has two main issues that he faces that are terminal.  The Muscular Dystrophy causes his lungs to be weakened and these kids tend to die of respiratory failure.  That can come when they are say 10-20 and their lungs just give out.  Or it can come from an infection (cold, flu) that just gets ahead of the lungs and takes them out. 

The second condition is the TPN and Central line.  A body was not designed to get it’s nutrition this way.  It’s very hard on the body. Some people can live on TPN for 30 years or more.  And others it takes them out early.  What’s the difference? No one knows.  My personal theory is that in Manny’s case, whatever causes him to not be able to metabolize food the normal way causes his body to not metabolize this correctly either.  He is showing signs of liver failure.  That’s permanent.  He’s not a candidate for a liver transplant.  You cannot live without a liver.  Secondarily is the central line itself … it’s an IV that resides right above the heart.  So any infection that gets in there can be potentially fatal.  Remember December 2011?  He barely survived that line infection!  The AMAZING news is that he has not had one since.  Precautions and protocols and prayers have pulled that off.  But it’s always lurking. 

So that’s the big picture. 

Throw in the eating issue and it causes BOTH of these issues to go into hyperdrive.  If we could get him eating and get him off TPN entirely, then we might be able to have a fair discussion.  But the truth is, he wasn’t able to handle even 5% of his daily intake before it sent him into severe respiratory distress.  We see him struggle for breath.  I have to hear him beg me, “Help me Mama”.  It’s torture on him and us.  I’ve put bits and pieces of it on the blog. 

So basically … I was in tears because I came to a decision.  I chose that I would rather him die of liver failure than respiratory distress caused by attempting to eat. 

How’s that for blunt? 

I said officially STOP TRYING TO KILL MY KID. 

And I was heard. 

The PCare doctor called the GI that I wanted to be dealing with.  He told her the updated situation.  Said I would rather be under her care than the doctor I had been working with (the one pushing for the surgery who said he would “NOT babysit TPN”).  She agreed.  And it was done. 

And I cried some more. 

That’s a lot of responsibility I just placed on my shoulders.  I cry as I type this now.  I can’t describe how final that seems.  How ridiculous it is to make a Mom decide between eating and breathing.  How impossible the choice. 

But it’s done. 

I still haven’t made an appointment with the GI who agreed to take us on.  (I know her well, she is the one who almost always sees us when we are in the hospital but she wasn’t officially our doctor but is now.)  I don’t know why I hesitate.  But I just am not ready to face the next steps I guess. 

As I sit here, Manny is playing beside me in his chair.  He's playing with trucks and tractors and trains, just like any little boy should be doing.  He’s making train and noises.  He loves to crash his monster truck into other things and then say, “Oh, that’s gotta hurt!” He makes my heart smile. 

I love the feeling of peace I have when he is off food.  I know that sounds completely insane but it’s honest.  When he’s on food, I have to sit and watch him like a hawk.  He starts to gag silently and loses his breath.  He starts to aspirate it and he can’t catch his breath.  He then loses his ability to breathe right (day and night).  He needs oxygen and even that doesn’t help.  His heart rate goes dangerously high.  He begs for help.  Etc etc. 

It’s torture.  On him and us.  And I can never take my eyes off him.  Every minute of the day I’m scared if he’s going to survive the day.  Scared I might need to call 911.  I don’t breathe because he can’t. 

And when he’s off food, he is normal.  There are no scary moments.  He can breathe.  He is just a little boy playing with his toys.  I am at peace. 

It’s something I’ve NEVER been able to get across to ANY of my doctors.  Just how drastic the difference is.  How complete the transformation.  How different the quality of life is … for all of us. 

And so I chose peace. 

I chose breathing. 

I chose to have more moments of playing happily at his high chair. 

So why does this make me cry? 

 

 

Not Seizures

Remember how several weeks ago I was all worried about Seizures?  Manny was in the hospital and he was obviously sick or he wouldn’t have been there.  But then he would have a trigger of something very unpleasant that would cause him to cry or get upset.  That would last for several minutes (crying, screaming, raging, angry, etc. ) and then he would sleep for minutes to hours.  There’s a certain type of sleep that’s called “post ictal”.  And this is what it looked like. 

Now you have to understand, Manny is NEVER crying, screaming, raging.  And yes, I understand that it could be a culmination of the tortures having been done to him.  Or it could be behavioral.  Or possibly even him pitching a fit.  But the sleep part cannot be. 

There was also a look in his face during these episodes that made him look like he was not there.  I would have said “Absent seizures”.

Meanwhile, Manny is a bright guy.  He is super smart.  But he also has a brightness in his eyes.  He is very interactive and engaging.  He WANTS to connect with people. 

And this was disappearing.  He started to have a dull look on his face all the time.  He was not behind his eyes much of the time.  He was withdrawing, sullen and cranky. 

I was watching him slip away. 

Two weeks ago, there was a day that had me in tears.  He screamed and cried and raged for about 6 hours.  He would have a moment here and there where he would be quiet but … it was pretty much 6 straight hours.  NOTHING helped.  Nothing worked. 

The next day, it was a repeat of the same thing.  I was just about ready to call his Palliative care doctor.  I am NOT one for medicines but it seemed like this was his new normal and this was not OK with me.  If he was going to be out of control all the time, I was going to need to have an emergency stash of a medicine that could help him. 

Not for me.  For him.  I fight CONSTANTLY for his quality of life.  I fight to ensure that he is happy.  And he wasn’t. 

I cried for a long time that night.  

I was determined I would get to the bottom of this and find a way to help him.  Long story short, I reviewed in my head when this started, how it began, what are the details and the triggers.  And it hit me, this all started about the time we started on a medicine. 

So I stopped giving it to him.  Figured it was worth a shot. 

The next day, he had a few minor issues but pretty much was calm and under control.  Even the kids noticed Manny wasn’t grumpy. 

By the end of the third day off the medicine, he had no rages or issues.  The light started to come back in his eyes. 

By the end of a week off, I had my baby back.  He is fully engaged.  Learning.  Playing.  The brightness is back. 

It’s not “proof” that it was the drug.  But it’s enough evidence for me.  I’m convinced.  I have no intention of putting him back on this medicine.  (Yes, I let his doctors know I removed him from it.) 

As I write this, he’s been off the medicine for 3 weeks.  Still no “seizures”.  No more of those blank stares.  No more rages.  Now it’s just “regular” 3 year old stuff.  (OK maybe more than the regular 3 year old stuff ... there's some frustration and pain he's dealing with and we're working on a solution for these.)

I feel like a detective all the time.  I pour over literature.  I read through medical journals.  I chat with I can’t live with that.  mothers of complex kiddos.  All the time I am trying to figure out a puzzle.  Feeds, breathing, neurological, pharmacology, etc.  I feel like I’m studying for a crash medical course but if I don’t get it right, it’s not just getting an “F” on a test, it’s failing Manny.  That’s not an option. 

But in this case, I feel a huge HUGE relief.  This isn’t about a neurological decline.  It’s not seizures.  It’s not the new normal. 

 

 

Dragon Mom

I was “That” kid.  Straight A student. Captain of the cheerleading team and volleyball team.  I ran track.  I sang (and won) singing competitions.  Competition was important to me.  Grades were everything. 

Fast forward.

Many of my friends are all about the latest outfits for their kids, the best colleges, getting the right grades, having a well rounded “resume”, extracurricular activities.  They are trying to help their kids get ahead.  Recently I’ve heard it termed the “Tiger Mom”.  And I understand it.  I thought for sure that is the kind of mom I would be. 

I have 6 kids with varying degrees of special needs.  My focus is soooo completely not the same.  I care about happiness and health and balance.  I fight for these things.  I teach citizenship and morality, how to make friends and skills needed to get a job. 

I couldn’t care less about the tiger mom type of list. 

I think life is short.  Childhood is even shorter. 

And I ask myself often … what is this life all about?  And not to sound trite but … “Love the Lord your God with all your heart and with all your soul and with all your mind.  This is the first and greatest commandment.  And the second is like it: Love your neighbor as yourself.” (Matthew 22:37-39)

So I wonder often how to do THAT.  And I have no clue. 

And what about Manny?  How do you raise a child that you’re not sure will live until adulthood?  I know that’s a heavy sentence out of the clear blue.  But it’s an honest question. 

A few months ago, I had a decision to make about a trip and they suggested I make it based on what Manny wants to be when he grows up.  And it hit me …

I’ve never asked him. 

You know how you ask every child by the age of 3 or so what they want to be when they grow up.  Fireman? Ballerina?

Um… I had no clue.   

I had never asked him. 

As I was reflecting on this whole conundrum the other day, I stumbled across an article. 

It’s a whole different take on the subject.  Hope you click on the link and read it.  It’s about a “Dragon Mom”.  Maybe you will begin to understand me a bit better by reading through this author’s eyes.   

 http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?smid=fb-share&_r=0