Thursday, April 3, 2014

Our Story: The Beginning

"Our Story" is a long one so please bear with me.  So much has changed from Dec of 2013 to what we thought and dreamed was supposed to be an oh so wonderful 2014.  We had a move coming up in Februray to Ft. Rucker, Alabama.  Matt had recently been accepted into Warrant Officer school to be a pilot in the Army and we were so excited about the move and lifestyle change soon approaching us.  We were ready to bid farewell to our time here at Fort Hood and Matt's current job as an infantryman.  2014 brought us a raise, a new life, a pilot Daddy, Alabama and exciting adventures awaiting us.  Little did we know...

Our story will consist of three or four blog entries to bring you all up to date on everything as our journey continues to unfold with Camden's disease and diagnosis.  After that I plan on blogging day to day hardships as well as the daily delights.  The good, the bad and the ugly, you know, that thing we all call LIFE.  What better place to start than at "The Beginning"....

During Christmas break it was brought to our attention that our six year old son could no longer climb the stairs in our house like he always used to.  I had seen him crawl up here and there before but honestly never thought anything of it.  By all means, he's a little child and what do they do best, they play and act silly!  It's all I ever thought was going on.  Having no other reason to think otherwise, it never alarmed me.  But then I noticed it happening a lot during the break since he was home all day for two weeks.  I started by asking him to walk up the stairs like a big boy.  I stood back and watched. He struggled tremendously and dragged himself up using the railing.  Very odd...  So then I took his hand and had him walk up with me, never letting go of him.  I noticed his struggle big time, that it was very real and he was definitely using me as most of the support in the endeavor.   Next was the scariest part, I let go of his hand.  He immediately fell.  That's when the alarm bells went off that something was definitely very wrong.  I did what I'm sure most parents do when a medical issue or question arrises concerning themselves or their child, I turned to Dr. Google.  

Let me tell you what, I was in no way prepared for what I would get back each time I typed in the search bar "six year old boy with muscle weakness unable to climb stairs".  The word, before now,  had absolutely no knowledge of, a word that immediately became so seemingly scary and my greatest fear, a word I now write, read, say aloud or think of each and every day...Duchenne.  I had always known of and even seen the Jerry Lewis Marathon as a young girl and knew of Jerry's Kids.  I can honestly say I actually had no idea who they were or what it was truly about.  It was all about kids, like mine, with neuromuscular diseases just like Camden.  The MDA suddenly took on a whole new meaning.  Through my online research, I learned there are certain signs and what tests needed to be done in order to see if this is what my son could truly have going on.  I quickly became a research junkie on all types of muscular dystrophy, myopathies and possible autoimmune diseases that sounded remotely like Camden.  I needed to know what was wrong and I needed to fix it!  

I had Camden do some tests for me to see if he showed other obvious signs, symptoms or red flags for muscular dystrophy.  I wanted so badly to rule it out, to not let my mind even fear such an awful thing.  We did it in a fun sort of way by having all four kids play Simon Says.  "Simon says lay down.  Simon says get up!"  In that one all of my kids would sit up and stand right up.  Not Camden.  He would roll over, get to a knee and push up off his other knee like a struggling old man or walk on his knees over to a piece of furniture to assist himself in getting up. (Red Flag: Gower's Sign)  Next, I took them all outside to do a little race in our backyard.  Every child, even my 2 year old little girl, left Camden far behind.  His run was similar to that of a slow motion walk that looked like he was struggling so hard to complete.  (Red flag: Unable to run)  The last thing we did is take our bikes and scooters across the street to the school parking lot in order to get some fresh air and have fun.  Camden couldn't make it up any incline whatsoever.  We literally had to push him and after a bit of struggling, he gave up on riding his bike.  (Red flag:  Can't ride his bike or things he used to)  I also noticed how hard it was for him to get in and out of our van unlike his siblings.  Once all these red flags started waving their big red ugliness in my face I became terrified of what they all directed me to.  Once again, that awful word.  Duchenne.  

Once his weaknesses became known, we started noticing every little thing and slowly putting the pieces together one by one.  Since he turned five years old early last fall, he had lost lots of energy and would tire easily.  He suddenly never wanted to go outside much and play or ride his bike.  He was sick a lot more than usual that year, seeing how he was never sick in Hawaii, and missed a lot of prek.  He complained constantly of leg pain.  There were days he would begin to actually limp around.  We saw his pediatrician and even took him to the ER once when his limping got worse.  Both chalked it up to growing pains and an xray even showed wide growth plates due to him growing taller so quickly.  So we gave advil when needed, rubbed them and after a few months he finally stopped complaining of pain.  When we went on walks or out somewhere that required lots of walking, after a while he would start complaining he was tired.  Everywhere we walked he always lagged behind.  I think back now and cringe over how I was always telling him, "Hurry up, Camden!  Stop lagging behind and being a slow poke."  If I could only take those words back...  Last year we did notice that he wasn't a great runner, looked a bit funny even when he ran, but otherwise a healthy, super smart kiddo.  We chalked that up to him being a little uncoordinated and our bookworm versus our athlete.  Looking back now, I can see the little signs we missed.  I can also see why this can easily go unnoticed for a while if it wasn't apparent in infancy or as a toddler.  I always wonder if I really would have wanted to know though.  Those six years of not knowing, of him being completely normal and living a long life, the life I dreamed for him, those years are the golden years.  Those are priceless.  I want them back.

Never ever ever in a million years would we have imagined this or what we would be facing today.  Never in a million years would I have imagined this life for my first born, perfect little baby boy.  My sweet Camden, my best buddy as we were all each other had in Germany while Daddy was deployed for 15 months and only a sweet friend there to help bring him into this world.  The little man that forever changed my life for the better.  He made me a MOM!:)  He made my life so special and full of love and laughter.  My beautiful Matthew Camden McAlpine.  

I fought our horrible healthcare system with a vengenace to get him a peds appointment.  The earliest they had was three weeks out and to me, that was unacceptable.  After several persistent calls, we got him booked for the end of that week.  I was petrified for the arrival of the day of his appointment.  All I read about Duchenne sounded so much like Camden.  It is a horrible disease that is 100% fatal.  Most children don't make it to their 20s.  Some are taken far too soon due to how it attacks the heart and lungs.  It leaves children completely paralyzed and takes their ability to walk around age 9.  I refused to believe my child could have this.  It HAD to be something else or some fluke thing.  

A few days before his appointment, in all my nonstop time spent with Dr. Google, I came across this certain video labeled "Gower's Sign" on youtube.  It showed "The Duchenne Timeline" and examples of boys from the start of the disease up until their final days.  I have included the link below so you can get the full impact of what I witnessed that night.  I watched it and began sobbing uncontrollably.  Matt stopped his game and looked over at me crumpled in a ball on the couch asking what on earth I was reading now?  I handed him my phone, replayed the video and made him watch.  Within minutes he was holding me tight, sobbing right along with me.  We were like two scared children clinging to each other completely and utterly helpless.  We knew...

On Friday, Jan 3, 2014 we started the medical journey with our son at the pediatric clinic on base at Fort Hood.  After being seen, my fears were confirmed that he could very possibly have a neuromuscular disease.  Our ped immediately put him in for a pediatric neurologist referral with a Dr whom she trusted in San Antonio and a genetics referral there as well.  She told me he was very weak for his age and that she was very concerned about his poor weight gain.  She sent us to the hospital to run a number of labs, checking his CK, thyroid, CBC, ANA, CRP, Sed rate and multiple other possibilities.  They took 8 tubes from my little man that day.  He was so scared but was such a trooper once they got the needle in and took his mind off what was going on.  I, however, was shaking and crumbling inside.  I couldn't wait to get home and be able to retreat into my room and break down.

That evening, the Dr called me right away to inform us his cbc, thyroid and other labs came back normal, but his CK was indeed elevated to 2,800 (normal being 50-200, therefore indicative of muscle break down and damage) and that his CRP and sed rate showed inflammation as well.  She told me she had immediately contacted the neurologist (Dr. Faux) in San Antonio and that he agreed we were most likely looking at Muscular Dystrophy being a front runner but to let us know there were a few other possibilities that could be going on.  I was devastated.  I remember hearing her but not hearing her.  I remember for some reason responding in an up beat, "Thank you so much, we appreciate it and have a great weekend!" manner.  I was in shock, disbelief I guess.  I turned to Matt and relayed to him the results.  We both excused ourselves upstairs to our bedroom and collapsed into each other on the bed.  I've never wept in such a way.  So full of fear, hurt, sadness, devastation, questions and the biggest thing...ANGER!!!  Why our baby?!  How could this happen?!  Why, God?  WHY???  I don't think I will ever stop asking that question nor will I ever get the answer...

The next week or so was all an emotional blur.  We cried constantly.  We took turns running to the bedroom to conceal our tears and breakdowns,  making calls to our families for comfort or venting.  I remember I couldn't even look at Camden without my eyes flooding with tears.  We either slept with him, or on the floor by him.  I would lay there and kiss his cheek, caress his hair and just quietly cry as he slept.  Here was this precious little angel, laying there and sleeping so sweetly.  Completely unaware of this ugly thing that could be in his body that would slowly destroy and kill him.  

Most of all though, we changed.  Life changed.  In that single moment family and our son meant more than anything to us.  We took the time to cherish our children and do more things as a family.  We took the time to just LOVE them.  Not that we didn't before, but we definitely took a lot of time together for granted.  We fished, we bowled, we went to the park and we played board games.  The kids had fun.  We struggled now, truly noticing Camden having a hard time with so much that we did but he was still having fun and that is what mattered.  We prayed and prayed and prayed some more and sought refuge in our God.  

The next big day was Monday, Jan 13, 2014.  The day for our trip to San Antonio to see the specialists.  Up until this day my husband and I spent many a night with once again, Dr. Google.  I remember my goal would be to prove that he could surely NOT have that word that soon became a curse word in my mind.  I wouldn't wish a thing wrong with my child EVER, but if it had to be something, let it be a treatable, manageable autoimmune disease OR Beckers.  NOT NOT NOT NOT the D Word!  The more I googled and researched, the more I became depressed.  There wasn't much else it could be.

Monday came and my mom drove up from the Houston area to watch our other three children and stay with us for a few days.   We left early that morning and stopped to pick up our dear friend Brittany to go with us as support and be able to pull Camden out when needed.  It was one of the most emotional days of our lives.  After seeing Dr. Faux and a team of doctors and then Captain Rohena from genetics, we were given the worst news any parent could be given.  "Your son has Duchenne Muscular Dystrophy."  Plain and simple, just like that.  To this day I can still hear Captain Rohena's voice resonating like that little devil tv portrays sitting on your shoulder telling Matt and I with an ugly smirk and raspy mean voice...

"Duchenne is a very progressive disease that is 100% fatal.  Your son was born with a genetic defect that doesn't allow his body to produce dystrophin.  Since it can't his muscles are being broken down and destroyed and he will continue to loose them.  By about the age of 10 he will be confined to a wheelchair, later his lungs will be affected and he will need breathing assistance.  The heart and lungs are muscles as well and before long they will fail and he will either die from heart failure or lung failure, probably in his later teens."  

I never imagined a doctor to be so blunt and in my mind, cruel.  Believe me, I already knew the "timeline" and what happens because don't forget, I was very best friends with Dr. Google.  However, how dare you sit and tell me exactly what will happen to MY CHILD!  I'm sorry Captain Rohena, but you don't know Camden.  You don't know that he is a fighter and so are his Mommy and Daddy.  We aren't going to just sit back and let this death sentence you think you have given him happen without one hell of a fight!  Shame on you, sir!

During all of this Brittany had Camden outside in a waiting area playing games with him on her ipad.  There is nothing more beautiful than the sweet innocence of a child.  I can't thank the Lord enough for that and for being able to protect that and him right now for as long as we can.  We were sent to the lab to have more blood drawn for the DNA genetic testing that could take up to two months for results.  Never a fun process with a six year old little boy terrified of needles. We were then sent home to sit and wait for the call confirming their diagnosis.  We put on our smiles, grabbed Camden's little hand, and walked out the door.

We had already planned to make a day of the two and a half hour drive to San Antonio from Fort Hood as special as we could for Camden after his appointment.  Matt had been given a Bass Pro Shop gift card for Christmas so we planned to take Camden there right after and use it on him.  Together, Matt and Camden picked out new fishing poles for himself and his brothers and sister.  They put together a tackle box full of fishing supplies.  He even got to play a few fun games there.  Camden was so excited about his new fishing gear and to be able to go home, show his siblings and go fishing that weekend.  Next we let him pick his place of choice for dinner and surprise, surprise it was Chili's.   Kids dream big huh? :)  

I'll never forget how hard I worked to hide my tears and keep a fake smile plastered on my face until we got home and put Camden to bed so he couldn't see me fall to pieces.  He was so worn out from the trip and events of the day that at dinner, he laid his sweet head in Brittany's lap and rested.  I couldn't even taste my food.  I sat over my bowl of whatever new dish it was Brittany and I decided to try and cried silent tears.  We got our ticket, loaded back up in our van and began our long drive back to Fort Hood.  We attempted playing car games to keep our minds focused on driving, off of the obvious and getting home.  Sometimes I succeeded, but mostly I found myself turning to the window, hiding my face in my sleeve and silently sobbing.  I remember Brittany's sweet hand on my shoulder from time to time.  We couldn't have made it through that trip without her and I will never be more grateful to her for being there.  

My little man was exhausted after the trip.  We put him down and then I broke the news to my mom.  I didn't want her to know before we made it home because she had a big job as it was just taking care of our three younger kids and I wanted her mind clear and strong for them.  Matt, my mom and I sat on our couch in a huddle of what I guess was a group hug, clinging to one another and crying.  So much to hear and to take in.  So many thoughts, fears, unknowns, questions...  What will happen next?  What does all this really mean for my son and family?  Am I a carrier?  If so, do any other of my kids have this too?  What does this mean for our upcoming move we were supposed to have in February to Fort Rucker?  Will Matt even be able to still do flight school?  

But the biggest thoughts playing over and over and over and over....

My son is going to die.  He won't walk soon.  He will become paralyzed.  His heart and lungs will fail him.  My dreams for him are gone.  His childhood stolen.  My son is going to die.  And so I began to mourn...


  1. Thank you so much for sharing the whole story with all the emotions that go with it. I hate knowing you are reliving it all as you recount it, but I am appreciative that you are willing too. I'm always curious, to the border of being nosy. Please
    Never forget we are all here to hold you up when you are weak and stand beside you while you are strong. And next time you go to Taco Bell order beans and rice with no hot sauce and remember a time when this was never a thought. Just for a moment.

  2. I have been following you and Camden on the DMD Moms fb site. I am raising a little boy with Duchenne (he's not related to me but is the grandson of a good friend who is unable to raise him). James was diagnosed at 2 but we knew long before that that something wasn't right. At a well child appointment with his pediatrician his labs showed very high levels of liver enzymes. Doctor had no idea what was going on so referred us to Seattle Children's. A few days later his pediatrician's office called for us to come in and she broke the news. I felt like I'd been punched in the gut and actually fell back against the wall! His grandmother wasn't surprised because she knew that James had a brother who died of Duchenne at age 21 but hadn't told me. I'd gotten co-custody of him when he was 6 months old - all this time she knew or suspected but didn't tell me. Now g-ma is 94 and in very poor health. James and I have been living alone for the past four years. He just turned 10 in March and is in a powerchair or on the floor full time. He also has high-functioning Autism and developmental delay. Thank you so much for sharing this very painful story. Your family is in my prayers daily as are all the others who are dealing with this horrible disease. May God bless you and give you the strength and guidance to see you through this.