Friday, April 11, 2014

The Waiting Game

Three months later after our visit to San Antonio and we are still waiting to pinpoint the cause of Camden's muscular dystrophy.  The first DNA and sequencing tests came back negative for any mutations or deletions.  Now they are running a supposedly newer test that can show more than a muscle biopsy and is examining more genes, trying to pick up 26 different possible causes.  However, none of these can go in and tell us the simple fact if there is dystrophin or not.  Right now, the team of doctors we are seeing are so concerned with figuring out why his blood work is stumping them, rather than treating my child with "the standard of care" that they should be for MD.  Dealing with the team at San Antonio Military Medical Center has been one of the most horrific, frustrating and infuriating experiences in my life.

I have never really been a crier.  It never was my thing, especially in front of people, until the past few months.  Now it feels like I can't stop.  I'm not sure a day has passed where I haven't cried.  I've learned there are so many types of tears and I have learned the true meaning of weeping.  There are tears of joy, frustration, helplessness, anger, fear, defeat, grief and of loss.  I have experienced every single one of these.  They also say there are five phases of grieving.  They are denial (numbness, shock), bargaining, depression, anger and acceptance.  For a while I think I flip flopped between a few of these, mostly depression and anger.  The denial phase didn't last too long for me because my intuition and medical background told me otherwise, but believe me it was there for a bit.  Bargaining, I will never fully leave that stage.  I will attempt to bargain with God until the day I no longer have a choice.  I would take this disease from my son in an instant.  I would gladly lay down my life and give him mine.  Take my strength, my arms, my legs...  please Lord, give them to my son and let him run and play and thrive.  Let him be strong.  Let him live a long life filled with happiness, isn't that all any mother dreams of for her children anyway?  Acceptance, now honestly, that is a hard one.  Will I ever really accept that this is happening to my child?  Probably not.  Do I know that this is real? Yes.  In a way, I accept this horrible fate.  What I don't accept though, is people telling me that God has chosen Camden for a reason and he is using him to teach and show people something amazing.  I choose not to believe that God in any way gave my child this fate.  I whole heartedly believe in God.  I always have.  Have I ever struggled as a christian or in my faith?  Of course.  I don't think we are human if we don't.  Do I get mad and angry with God?  YES!!!  Do I think that is wrong?  NO!   Do I still believe he is beside us and will see us through? YES INEED I DO!  I was raised in a strong christian family centered around faith.  Even though I've strayed at times from the path God would like me to be on, I have never lost faith in his love for me or for Camden.  My mom had cancer and thankfully she beat it.  I don't think God chose her to have it and suffer so he could use her to help others.  I just don't believe that and so those words offend me deeply. I do think that Camden is very special and has a special soul.  I think God made him that way and it is how he will be able to live to his fullest through all this and his upcoming trials.  However, with my faith, I still find myself stuck in depression and anger throughout the waiting game.  I want out so badly.  I want to smile a real smile and feel real joy.

Unfortunately, we now have at least three more moths to sit and wait on labs.  In the meantime, this momma has been researching, emailing, calling, messaging and fighting daily to find a better means of care for my son.  I feel San Antonio has failed him.  As hard as it is to admit, I know in my heart my child has Duchenne.  After all, I see it and live it daily.  His physical therapist sees and confirms it.  I watch him gradually grow weaker without any medical care.  Our team refuses to give my child steroids until they have the confirmatory blood work, no matter how he presents.  They are actually very much against them.  I have tried to battle this and now I'm exhausted and am trying my best to go around them and get referred out next week.  If I can ask anything right now, I ask that you PLEASE pray over us and our visit on April 17 with his primary care pediatrician.  Pray that she sees and hears me and gives us the help we need.  We want to have Camden seen at the Neuromuscular Specialty Clinic in Dallas more than anything!!!

In the meantime, we work with Camden daily.  We stretch, massage, do nightly soaks in epsom salt and continue with therapy and his new night splints.  Matt's flight school has been pushed back until January.  I'm still undecided if I will go with him or not for that 18 months or so in Alabama, especially if we finally get into Dallas.  I don't even know if we will have a on paper diagnosis by then.  We need it so badly to start the right care, get him protected properly at school and get into the Army's EFMP.  We need a house without stairs as well so badly.  Watching my child struggle with a daily obstacle in his own home is not ok with me.

He is getting so thin due to loosing his muscles and it hurts my heart and soul to look at or touch his arms and shoulders at times.  He has started experiencing more daily pains and has unfortunately realized his night splints just aren't as cool, comfortable and fun as he dreamed they would be.  My heart aches for him knowing this is just the beginning...

So we still sit and wait, stuck in limbo.  No clear future any longer.  Just many fears and unknowns.  We stand by and continue to play the waiting game.

1 comment:

  1. Hi, I'm a colleague, friend and sister-in-Christ of Kelly Barker's. I'm also a RN and former Air Force wife of 27 years. Please forgive me for offering unsolicited advice but as a mom who lost her son to leukemia many years ago, I feel your pain. The first suggestion I have is for you to reach out to your congressman. You should certainly be able to get appropriate housing and into the Army's EFMP even without a definitive diagnosis. My second suggestion is that you go to a civilian Center of Excellence for evaluation. It sounds like the Neuromuscular Specialty Clinic in Dallas is the place to be. You can use Tricare Standard to start but with a congressional investigation, his care should be covered in Dallas. I would not wait. Have you contacted the Neuromuscular Specialty Clinic to ask if they will see Camden?

    I've been praying for Camden and your family since Kelly first told me about the situation. If I can be of any assistance, please feel free to message me through Facebook.

    Roberta Taillon