Friday, August 6, 2010

About Gavin

"Rejoice in the Lord always; I will say it again, Rejoice!"



Gavin is our 8 year old witty and snuggly sweet boy with an infectious smile, a hilarious sense of humor, an inquisitive mind, a sensitive spirit, and a compassionate heart.


He adores his sister; they are best friends.

He loves being in water




and boogie boarding at the beach

playing Little League Baseball


and he is obsessed with everything Lego and Star Wars.     

He has a rare and life-threatening disease called Systemic Mastocytosis (like me and my daughter) but also has a second rare and un-related life-threatening disease called Pseudo Zollinger Ellison Syndrome (that my daughter and I do not have).

He is the only one in the world
that is documented to have both diseases, and is a persistent medical mystery.

Both diseases affect his entire GI tract, and of the two diseases, the Pseudo Zollinger Ellison Syndrome poses the greatest risk to his life. 

The syndrome is caused by an abnormal growth of excessive gastrin cells in the antrum of his stomach, and they function abnormally by producing too much gastrin, a digestive hormone.  Because of the severity of his disease, he has at least 16 times the normal amount of gastrin circulating through his bloodstream all the time.

 Through a digestive chain reaction, this severely elevated gastin level causes his stomach to produce too much gastric acid all the time. 

This gastric acid is difficult to supress; the more we increase his acid blocking doses, the more the gastrin cells grow and hence, the more they produce more gastrin (which then produces more acid, etc.). 

If we don't increase his dose, the acid will erode the lining of his stomach, and could potentially cause a hemorrhage, which would end his life here on earth. 

So we do the only thing we can do--continue to increase his medications past the recommended limits--to  record breaking doses-- to prevent death and the misery that would come before--knowing full well, that without the Lord's divine intervention--eventually the medications will stop working.

Once it does stop working, he will need surgery to remove the portion of his stomach that contain these abnormal gastrin cells; it's called a partial gastrectomy or an antrectomy.  While the surgery is a cure, it is dangerous and poses a lot of life-threatening risks and complications to our son.

Everyday is a fight to keep his symptoms under control so that he will not need surgery while he is young.  Our hope is to put it off until he is considerably larger, as with growth, the risks decrease. 

As if that wasn't enough, the Mastocytosis affects him the most severely of the three of us.  Besides causing frequent episodes of easy to trigger anaphylaxis, it also affects his iron count, his ability to absorb nutrients, his brain, mood, heartrate, blood pressure, his endurance levels, his body temperature, and his energy levels. It also causes hives and rashes on his skin along with frequent pain in his muscles, nerves, bones, joints, and head (severe migraine-type headaches).


He has 30 prescription oral medications
(below is just his morning doses...he also takes meds at lunch, mid-afternoon, dinner, and bedtime!) 


and has had 10 PICC lines and one port-a-cath; we have used it for IV fluids and medications on and off for the last 7 years.



We pray for healing for our sweet boy, but ultimately pray that he will grow to love the Lord in a personal way.  We know that God's will for his life will prevail, and we know His plans for our son are good plans; we're honored to see those unfold before our eyes!



"For you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." {Psalm 139:13-16}


{To read his complete medical story from start to current (6 chapters!), click here.}

1 comment:

Deb's Doodlings said...

My cousin's son is the "Ellison" of your son's meds. If you ever need more info on Brock, let me know. Brock is in college, trying to live a normal Christian life.