It was a weird summer...
So, summer started out pretty normal, we went on a trip to Universal Studios as soon as school was out and summer seemed to kick off with a bang.
Shortly after we returned home, we got some troubling test results from my son's doctors. Before we knew it, we were scheduled for a colonoscopy/endoscopy near the beginning of July. The prep for this was a $hit storm...literally. The surgeon came out to speak to us after the procedure and showed us photos of my son's intestines and told us he was fairly certain my son had Crohn's Disease.
For the past 2 1/2 years we have been going to a pediatric endocrinologist to determine why my son wasn't growing. He fell further and further off the growth charts for height and weight until he was no longer on the measurable curve of the chart at all. Endocrine had no idea why as his blood work for growth hormone was coming back normal. We were put on high calorie, high fat diets and had numerous people tell us we simply weren't feeding him enough since his blood work was also showing malnutrition and borderline anemia.
Finally, after all that time they released us and referred us to Gastroenterology and within 2 weeks we had a possible diagnosis of Crohn's. (I'm pretty pissed that endocrine held onto us so long I"m also thinking at this time, what the hell is Crohn's Disease??)
I remember the night before his scopes, he looked at me and said "Don't be mad, but I hope I have it (Crohn's)." He said that because of the years and years of searching that had yielded nothing. He was now 13 years old, 54 inches and 65 lbs.
We were scheduled for a CT scan after the scopes and there we had definitive proof of the disease hiding there in his small intestine. It was bad. Really bad. Surgery bad. However, too much of his intestine was diseased. Surgery was not an option. I received this news on my cell phone while touring the Franklin Institute in Philadelphia with my kids. Fun trip, eh?
He was diagnosed in mid-July and we spent most of our summer at dr. appointments with him for vaccinations, procedures, check ups, blood draws, and finally treatments.
My oldest and youngest sons spent most of the summer alone while we were at appointments and I was drowning in sadness for my middle son and guilt over my other two kids.
You know, The Big Guy and I were just looking at our kids 15, 13, and 12 years old and thinking that we were pretty damn lucky to have such healthy boys. We had beat the odds. We were untouchable.
Now, I'm looking at a doctor tell me my 13 year old son has an incurable autoimmune disease that will require treatment consisting of a 3 hour IV infusions and a few poison pills a week. Oh, and by the way, he will remain on this treatment for the rest of his life or until his body rejects this medicine by sending him into anaphylactic shock or his liver shuts down one day...whichever comes first.
To top it off, no one will ever take his disease seriously and give nonsense advice about changing his diet and share cute anecdotes about family members who also have digestive problems they cured with antacids or prayer or going paleo. They tell us they know how hard it is because they can never eat popcorn again. Screw you, people.
So, yeah, it was a weird summer.
The funny thing is that now that we are a little over 2 weeks into treatment and it is already becoming our new normal. We go to the hospital, get an IV put in, plan what games to play and what movies to watch during that time. Talk about where we will go for lunch. Then on Fridays we pop the poison pills that kill his immune system - he gets the shakes, he vomits, he lays in a half stupor and sleeps through the whole next day then he wakes up on Sunday ready to face the week and we start all over.
I hardly even cry anymore.
So, I'm bitter, I'm sad, I'm pissed, but I'm moving on and doing it. I'm learning everything I can about his disease, I'm scheduling treatments, I'm giving him medicine but I'm also going back to the gym, working on some fun projects for myself, getting on with life.
So, I'm sure you will see updates now and then on here mixed in with recipes and fun projects...you know, more of my life. We have no idea if the medicine is working yet. Still crossing our fingers and waiting. I'll keep you posted.