Monday, June 16, 2014

Hope for the best. Prepare for the worst.

I can honestly say I have been attempting to sit down and write this blog entry for a while now.  Although I have a million thoughts and emotions constantly surging through my heart and mind right now, I have struggled with finding the words to accurately express my thoughts and feelings.  Maybe, because I myself, don't really know what they are.  These past few weeks I've felt incredibly raw and vulnerable.  I bought into something last month that I kept warning myself not to do, I grabbed onto false hope.  I knew if indeed it was proved wrong, I would be crushed.  I knew in my heart that it probably was an inaccurate life line we were reaching out so desperately for, but as any Mother of any sick child would do, I chose to ignore the brutal reality and reach for hope.  What was my hope?  For something treatable, fixable, reversible...  For this to be some horrible dream that we would just wake up from.  For those days that I look over at Camden while just sitting around the house relaxing, without an obstacle for him to endure, seeing that he physically looks ok and I don't SEE his disease..for those moments to be the reality.       

It has been a hard pill to swallow learning that at age 6, not only is Camden showing a large amount of muscle wasting at a rapid rate, but also signs of lung weakness and heart involvement.  I think I was finally in an area of acceptance with the muscle weakness and deterioration. Being that Camden can still walk right now, we haven't hit the parts of this disease that always loom in the my back of my mind each night before I fall asleep and immediately each morning when I wake up.  We have somewhat accepted the path he is now on with all the Dr appointments, labs, physical becomes routine life.   

For some reason, I found myself anxious about Camden's first appointment in Dallas but not worried.  I've always knew it in my heart that Camden had muscular dystrophy when we started this journey on Jan 3, 2014.  Although San Antonio failed us figuring out the genetic cause of it and denied him the help he needed then, using him as nothing more than an experimental pin cushion, I was comforted in knowing we were on the right path. After many days and hours spent on extensive research and networking, I was getting my baby to where he finally needed to be for REAL help.  I was ready for him to be thoroughly examined and I was even more ready to find out a clearer picture of Camden's medical prognosis.  

 Although I knew that lung and heart issues could arise with MD at a younger age, they didn't typically present themselves until the later stages of the disease, sometimes around age 10 but mostly in the early teen years.  Sometimes, there are cases that don't even have heart involvement.  These are typically patients that you hear about living into their 30s who have been blessed with little or no heart complications, that the ACE inhibitors prescribed helped maintain the function left or that just didn't present until later in life.  With all my networking I was hearing though of those rare cases, of those precious little ones who weren't lucky enough to be one of the later.  I was seeing young babies pass at the tender ages of 10, 6, 5...  What mother wouldn't immediately become frightened?  I remember in one of my phone calls with Camden's neurologist in San Antonio literally begging for him to recommend a cardiologist for Camden to be at least checked out to take the fear off my mind.  He played it down big time and assured me that even if Camden truly has Duchenne, the heart wasn't even looked into until age 10 and even so that was still very early to be worried about those issues.  At our second and last appointment with this same Doctor, after being told that he would re evaluate my son, he didn't even once place a hand on Camden to examine him. Bluntly, in front of us and Camden, we were told that he didn't recommend steroids no matter what the case was because the ONLY thing they did is keep a child walking longer.  Last but not least, the "good" doctor let us know (once again in front of Cam) that as of now all we could do was physical therapy and he was fine and stable and no matter what the final diagnosis, he was untreatable, incurable and management wouldn't ever change for him.  I sat in tears through most of this appointment, holding my son's hand the entire time, looking at him off and on reassuring him everything was ok.  I had never been more ready to take my child and bolt for the door and never look back.  That doctor and that place was NOT where my son should be or ever have been. They gave up on him.  They deprived us of what every child MUST have, hope.

So this brings us back to Dallas.  Even though I knew what was happening with Camden, I went in remaining hopeful.  Hopeful for better care, for help, of someone being able to finally tell us where we were at in all this and what we could do to make things better for him.  Part of their standard of care is a full work up.  This includes pulmonary functions testing, an ecg, being screened by a physical therapist, an occupational therapist and by a team of neurologists.  Dallas Children's spent four long hours thoroughly examining Camden.  I was diligent in preparing for this appointment so I was aware of most everything that would take place and was able to fully prepare Camden as well.  I've noticed he does much better when I can sit down and talk to him about what all is going to take place with each new medical "adventure" and even show him images of what things will look like.  What I was NOT prepared for was the low blow given to us by his new doctor, Dr. Innaccone, that he had an abnormal ecg and his lungs were weaker than they typically like to see at this age, functioning at 74%. 

In that moment I felt the life slip out of me.  I was not prepared for that.  It was rare.  He wasn't going to be one of those cases, remember?  It was all I could do to keep a strong face and not literally vomit on the floor beneath me.  I tried so hard focusing on the rest but all I wanted to do was take Camden in my arms and run from reality.  I wanted far away from the hospital.  I felt trapped in that tiny room, suffocating...  

She then informed us that they felt the biopsy needed to be done as soon as they could get it scheduled so we could see what indeed we were dealing with and how progressive his disease truly was.  We had been waiting too long to poke and prod any longer with blood tests when the biopsy could give us a clearer picture much quicker.  Dr. Innaccone explained to us that before she would consider putting him under again for surgery, he needed to be seen by a cardiologist and pulmonologist right away.  General anesthesia can lead to very serious complications with these diseases, especially if the heart and lungs are weak.  One of the things I remember feeling troubled about as well was the way she kept saying that Camden's progressive muscle wasting over such a short period of times (months mind you for some areas) was very unusual.  

I walked out of that building, through all the elevators, walkways and parking garages in a daze.  My body was doing what it needed to do but my mind and heart were a million miles away.  

His heart and lungs were in danger?  He was so progressive that it is puzzling to this world renowned neurologist that deals with neuromuscular diseases on a daily basis?  What did this mean for Camden?  What was in store for him?  How long would we truly have him???  I was sick.  Sick that this could be happening, that my baby could even be that rare case.  WHY?  His precious baby heart...  How DARE those doctors in San Antonio!  How dare they deny my pleas for a cardiologist!  How dare they ignore him for months and let him get so much weaker without an after thought...  

As much as that all pains me to think about, I've recently learned to let that battle go.  Fighting the what ifs and the idiots back in SA do not help my son.  Fighting for the right care and answers now are what he needs.  So we will, we will fight.  Just because we didn't get good news and things don't look great, does NOT mean my child is a lost cause and has lost this battle.  It does not mean I will sit back and let some disease take him over of any of us for that matter.  It hurts terribly and I have cried many a tear for Camden and will continue to along the way, but it is Camden's life at stake and his little body and heart that have to endure all of this.  I've been fighting my way back to hope for him.  Not false hope, not regular hope, but biblical hope.  HE deserves that and so much more than this!

Webster's definition of hope is a feeling of expectation and a desire for a certain thing to happen.  The biblical definition of hope is "confident expectation." Hope is a firm assurance regarding things that are unclear and unknown. Hope is a fundamental component of the life of the righteous. Without hope, life loses its meaning and in death there is no hope. The righteous who trust or put their hope in God will be helped, and they will not be confounded, put to shame, or disappointed. The righteous, who have this trustful hope in God, have a general confidence in God's protection and help and are free from fear and anxiety.

I will trust God in all this with my son because he is first and foremost God's son.  God loves Camden.  I truly believe that.  God knows, just like we do, how truly special our little boy is and he isn't even CLOSE to being done with him and neither is this world.  God will show us miracles through Camden.  Camden is a warrior.  Camden is a hero already.  Heros always save the day!

As we approach the upcoming cardiologist, pulmonary and biopsy dates in the next few weeks, I ask of you all to fight and pray with us.  I've prepared myself for what could happen and what we could be facing, but I remain hopeful for the best possible news for his disease.  Each day is a new day and each day is another day to pray for Camden, pray for a cure and fight like crazy to see the next day.  It is another day to smile and be thankful that Camden was chosen to be MY son.  God gave me the greatest blessing of all being his mother. 

I will leave you with a video and blog from Mitchell's Journey, the incredibly inspiring journey of a 10 year old boy who lost his battle last year to DMD due to heart failure.  This little boy and his family are an inspiration of love, courage and faith to me and many around the world.  In this video they learn the truth of Mitchell's heart deterioration caused by his disease.  This is one of the same things we will be facing June 26th.  As terrified as I am, I needed to see this video.  I needed to be prepared for the worse so I could hope for the best.  #teamcamden #camdenthestrong #fightasafamily #prayforacure

Mitchell's Journey:  Matters of the Heart -