9.11.2014

My Weird Summer (Warning: this post sucks)

You may have noticed that I was unusually absent from my own blog this summer.  I didn't post anything about summer trips or fun projects or crazy pictures of my kids. 

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.

Rewind...

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. 






21 comments :

  1. Wow, that really sucks. My heart goes out to you as I read this. Crohns is a horrible disease, and I've known people that have managed it well...and others that haven't. Wishing your son the best results with his treatment!

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  2. ppppffffff!!!!!!!!!!!!!!!!!!

    sending you, your son and your family a lot of good vibes !

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  3. I am so sorry. That majorly sucks. Like super sucks. No other words than that. Sorry. Wish you guys nothing but the best as you navigate the best way to live with this.

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  4. Best of luck to your son and family with this. Crohn's used to be a virtually unknown disease. It's actually "come out of the closet" quite a bit over the last few years. My brother in law was diagnosed at 18 years old. He's almost 60 now and has been married to my sister for over 30 years. They have two grown sons. Two of my nieces have been diagnosed as well (they're sisters!). They are both in their early twenties. One runs her own catering and personal chef business and the other is a senior in college. I tell you this not to pretend that Crohn's doesn't suck, BIG TIME. But to let you know that people have been living with this, successfully, for a long time. Your son seems like a very brave boy. I'm sure you're very proud of him. As a mom my heart goes out to you. But you seem amazingly strong, too. Hang in there.
    Blessings, Kathleen

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  5. Jennifer -- thoughts and prayers with your son and your family. Stay strong - keep searching - don't take anyone's word as gospel. Your story is so touching and hats are off to your son and his strength...

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  6. You made me cry. I have no words of wisdom or pithy platitudes, but I will remember you in my prayers.
    It plain sucks, sucks, sucks to have sick kids. ( I was glad that you ended it by saying that you are going to the gym and working on projects. You still need to do those things that make you feel like "you".)

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  7. Jennifer, I am so sorry you have to go through this. That sucks so bad. I really appreciate your honesty and transparency-I cannot believe the things people say sometimes. I know they are trying to be helpful, but they need to get a clue!

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  8. Oh Jennifer, I am So sorry!!! We are walking that same road right now too, with ironically our almost 13yr old! (I never realized that our 3 boys were the same ages!). Failure to thrive, chronic diarrhea...blood work is normal, next up is endoscopy. Our 7 month old Great Dane puppy weighs more than our son!!!

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  9. I'm so sorry to hear this news and all you have been going through. Well I guess it's good to finally know what is going on and have a plan to treat it. I have a good friend who suffers with Crohns and I know how not fun it is. Hopefully someday soon there will be major breakthroughs in how to treat this disease and help your son to have a better quality of life. Best wishes to all of you.

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  10. I read your blog all the time and I think this is the first time I've ever commented. I'm really sorry, and I can't begin to think what this is like ... but I read a blog by another girl, Ali, who has Crohn's, too: http://www.aliontherunblog.com/ She's a runner, she's amazing, but she doesn't sugar coat the bad times, either. Maybe as a Mom it'll help to see how she deals with it, and follow along with her good days.

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  11. Jennifer, I'm really sorry to hear this! My heart goes out to you - as a mom who went through dealing with a chronically sick child, I do understand your fear, frustration and irritation. Looking back, when Jessie was sick (basically for five very long years from age 12-17), I think that the MOST important thing was that we remained positive and hopeful at the heart of it all (with, of course, those occasional silent screaming in the shower moments!).

    Not giving in and becoming a victim of this disease or letting it take over our HOPE was the key for us. I think that when we keep this at the heart of it all, it somehow transfers over to our child and that can be the best healer of all sometimes. Hope this helps. Write to me if you need to talk or vent. :)

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    1. Oh, and by the way, she had an Autoimmune Disease which involved dealing with all of the offshoots. Saw a neurologist, gastroenterologist, cardiologist, specialist for autoimmune diseases and her pediatrician on a regular basis.

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    2. You know, Lori, I thought of you and the struggles you have shared about your daughter. It inspired me to rip off the bandaid and share. I have only told about 4 non-family members because I can't say the words without crying. Baby steps, first type then talk...

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  12. I was so saddened to hear this for your family. But your photos show such a sweet boy and he certainly seems brave. And so do you. Your boy is lucky to have you. And so are the other two because you are showing them that SH** happens, and you do what you can, you don't drive yourself insane with the rest, and you love life. Good luck with everything and keep pluggin'.

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  13. Jennifer, I am so sorry you and your family are going through this now. From reading your blog I know your family has a tight bond and you are an amazing mom so I am sure you will all get through this. It is very important for you to get it all out. I went through some very tough things when my son was diagnosed autistic after years of testing and frustration. I felt very alone and other than tons of research, the only thing that gave me solace was journaling. I can't even bring myself to read those journals now because the despair was palpable but it helped to be totally honest with my fears and anger. My thoughts are with you and your family.

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  14. I am so sorry to hear about this. On the one hand, Crohn's is a bear. On the other, having an answer is comforting, even if you don't like the answers. Hugs to you and your family.

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  15. I don't even have words...... My heart aches for your son, for you....for your family! I'm glad they finally figured out what was going on with your handsome boy, but wish this was not the outcome. I'm glad you were able to get the words out, like you said, baby steps. And, I know you are a loving, adoring, mama bear (😉) and will be fighting for your son, advocating for his health, and doing everything in your power to keep him as healthy as he can be. Please know Jen, while we do not know each other "in person" my thought and prayers will be with your family as you continue on this path and find your new normal.

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  16. I am so shocked. I am so so so sorry. This is making me want to cry. What a handsome boy you have though, and I'll be praying for you. This just plain sucks. I am so sorry.

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  17. I'm so sorry to hear about what you, your son and family are dealing with. I hope now that you have some answers to what you are dealing with, you will make peace with it. I will keep you in my thoughts.

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  18. So sorry to hear of your troubling news Jennifer. Sending you sunshine and good vibes for all your family.

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