A Little Bit About Wesley

Hello, friends.  I am starting this blog to keep everyone informed about Wesley’s condition and to share fun things about our family.  I am also hoping that this will serve as a therapy for me.  (I can’t afford $50 per hour for a real therapist, so maybe this will help!)

You may ask, “Why is this blog named ‘Rocks In My Purse’?”  Well, you see, my son is a rock collecting machine.  Every since he was small, he is always picking up rocks for his “collection” which is quite big by now.  And where do they normally end up on the way to his shelf?  My purse of course.  …And I wonder why my purse is so heavy!

As most already know, Wesley has a rare autoimmune disease called nephrotic syndrome that effects the way his kidneys filter his blood.  When he is in an active relapse, his kidneys spill protein (albumin) from his blood through his urine.  Our bodies need albumin to soak up the excess fluid from our tissues and keep our bodies in balance.  When he looses a lot of protein through his kidneys, his body gets swollen up and because of the lack of albumin, he is at risk of blood clots.  The swelling causes his blood pressure to shoot up and he must be treated.

We keep a daily check of his urine to make sure that he has no protein in it.  We have special test strips called Albustix that we use.  Wesley is very accustomed to peeing in a cup as soon as he wakes up.  Occasionally I have found him testing his own pee!

He generally stays in remission with steroid treatment, however he has been on steroids for about a year and a half.  The effects of long term steroid usage are not good.  We are to the point that we know Wesley must have his immune system suppressed in some way, whether it be by the steroids or some other treatment.  Since his little body already will have been effected by the large amounts of steroids that he has used, we must find an alternative option.

We have known for quite some time that we would probably get to this point.  We have a couple different things we could try.  There are anti-rejection drugs like CellCept, tacrolimus, or cyclosporine that transplant patients take to keep their immune system from rejecting a transplanted organ.  These drugs lower the immune system and have many unwanted side effects.  We have also done much research on a newer treatment that falls under the class of monoclonal antibodies.  It is called rituximab.  Rituximab has been around for about 15 years, but was initially used for adults with non-Hodgkin lymphomas.  Now after a few years of research, it has been found that this treatment is also good for ones with autoimmune conditions.  It has only been used in children with NS for about five years.

We are really just buying time to keep him off the steroids until he (hopefully) grows out of this.  There is a large chance that by the time he hits puberty, this will no longer be an issue.  However, I have several older teenagers in my support group who have had no such luck.  I am hoping that will not be our case.

Back in the late fall/early winter, we did a 12 week course of cyclophosphamide which is a chemo therapy drug.  It was a hard decision, but the odds looked to be in our favor.  The drug was given in a very low dose and I was able to mix it myself and give it to Wesley at home.  After the treatment was over, he was drug free for eight weeks!  We were so happy that it worked, but also very cautious that he could still have a relapse at any time.

Sometime in March, Wesley got strep.  Anything that causes the immune system to react can cause a relapse.  Well, he did.  I was devastated.  We put him back on oral steroids and did a very fast taper.  At the end of the taper, he relapsed again.  By that point I was getting desperate to find some alternative treatment that could help him that wouldn’t destroy his body.  He had already been through so much.  We decided to do another course of steroids and do a super slow taper.  Also, with all the research I had done, I decided to cut gluten completely out of his diet.

Here we are, from May until August, gluten free.  He has been on the very end of the taper, a very low every other day dose of steroids, for over a month.  We had planned to keep him on that low dose until this Fall.  He has been very healthy all summer.  No problems at all.  Everything was looking great.  It seemed like maybe cutting out gluten was the answer.  He was scheduled to have a hernia repair this month on the 16th.  Then, last Thursday we did his daily urine test and he is spilling protein again.

This is not so much a surprise as it has been in the past, but I am still very upset about it.  I really want to get the hernia surgery out of the way.  We can’t do it with his immune system being low.  (Which is what we must do to put him back into remission.)

I need a bubble to put my child in.  When he is in remission, we are constantly worried that he will catch a small cold and have a relapse… but when he has a relapse, we have to lower his immune system and if he gets sick then, his body may not be able to fight off the bug.  So no matter how you look at it, my kid is just not allowed to get sick.  It is ridiculous!

Why can’t he just be a normal little boy?  I hate that he can’t experience the things that normal healthy kids get to experience.  I try as hard as I can to make his life as normal as possible.  It scares me that someday he is going to be emotionally scarred in some way because of this.  I know I already am.  I hate nephrotic syndrome and I hate food allergies.  I just want the very best for my baby.

This is my very first blog ever and I want it to be fun.  I want to say happy things and make people laugh.  I just felt the need to vent tonight.  Maybe I will sleep good now!


3 responses to this post.

  1. I love the name of your blog! It’s perfect! Hoping you get good news/results this week. Hugs, kisses, thoughts, and prayers!


  2. Posted by adrian funk master flex on August 12, 2012 at 10:37 pm

    I got all teary eyed reading this because I know some of the pain u guys are going through first hand… its hard….period….but Jehovah’s spirit somehow gets u through it… I love u Wess and Brad more than words…don’t know what else to say ….not used to be talking about those ( what do u call those things??? Oh yeah) feelings… hang in there kiddos and don’t b afraid to ask robin or me for anything!


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