Remicade

 

Choosing Emily's treatment path was not the easiest decision, yet we weren't left with any other options.  Emily's Crohn's has not been responsive to most of the drugs we've tried so far, and Remicade was really the only choice we had to go with. The positives outweighed the negatives, once we did our research, and we are praying that this one will finally get this disease under control.

Chemotherapy treatment began on Monday, July 30th for this sweet girl.  We showed up at the Hematology/Oncology unit at the Children's Hospital, selected our infusion block, and began a horrifying 7 hours of our lives.  It took 3 nurses 6 TIMES to get an IV into this child.  In the process, they blew 5 veins (which means they punctured the vein on both sides of the wall, causing the vein to collapse).  The 6th one thankfully took, but we had already been at the hospital for 5 hours at this point.  Through all of this, Emily had an unbelievably positive outlook, and a smile on her face.  I don't know how.  I certainly didn't!

Emily's next infusion is set for Monday, August 13th and I am prayerful that things will go smoother this time.

It's amazing to me how just over a year ago, we were reeling from discovering that both our kids had celiac disease, and wondering how in the world we were going to make that work.  And this year, having discovered that both girls also have Crohn's makes the celiac seem like such a non-event.  What I would give to have my biggest worry be how I was going to make pancakes gluten free!

I believe God gives every one of us a reason to be here.  Some of us go into highly specialized fields.  Some of us find our calling by staying home with our children and educating them ourselves.  In either case, we are all called to do something.  I believe my calling is to raise awareness and at times, money to help find a cure for my kids.  Crohn's is a horrible disease, and my children are only 5 & 6 years old.  The thought of them going through life like this just makes my heart hurt.

We are so blessed to have a circle of friends as well as family who understand what we are going through and support us every step of the way.  Without that, I'm not sure how we would survive this.