Kane being silly after drinking his cup of “silly juice”.

I am not a big fan of doctors.  I don’t have anything against them, I just usually find going to them to be anxiety producing.  I especially don’t like having procedures done when they have to put me to sleep.  Don’t get me wrong, I would much rather get put to sleep for the procedure than be wide awake, but knowing I am getting medication to be put to sleep scares the bejesus out of me.  This utter fear quadruples when it is one of my children who gets put to sleep.  I turn into a basket case from the moment the nurses give them the “silly juice” to calm them down until I get back to the recovery room with them after the procedure has finished.  Does anyone else with they could place an order for their own “silly juice”?  I need that “silly juice” for when the nurses finally wheel my kid away to the surgical room.

Last Friday the weather was perfect to sit in the outside garden waiting area at Nemours/Alfred I. duPont Hospital’s.  I waited for an hour and a half for Kane’s doctors to come back to share their findings with me.  The sunshine was shining and there was a slight breeze.  It was very refreshing and exactly what I needed while I was waiting.  As I sat outside checking my work emails, texting friends and family, and watching the clock I realized a little more time than anticipated had passed by, so of course I started to get more anxious.

Yes, I tend to go from zero to a thousand but I already didn’t have great feelings going into this appointment so I started to panic a little bit more.  Then I remembered how Kane gently kicked me in the pre-op room before they took him back.  He is very aware and probably knows me a little too well and recognizes when I start to panic.  So as I sat there I started to slow down my breathing and look around at the flowers in the garden to see what colors surrounded me.  “Smell the roses” (flowers); “look at the colors”; this is what I tell all my students to do when they get anxious or stressed out.  I knew I needed to take my own advice.

Then the doctors finally came out.  I knew by the look on their faces that things had changed.  They sat down on either side of me and started showing me the photos they were able to take.  I realized at times I wasn’t listening very well.  All I could see were the number of ulcers in the photos.  I knew then for certain that our “normal “was going to change drastically.

To make a long story short, the number of ulcers inside his intestines and his colon increased significantly, as did the damage they were doing.  Drastic measures needed to be taken in his treatment plan.  The doctors told me they took several biopsies and we would get those results in a little over a week.  Clean eating, Boost plus, and Pentasa was no longer an optimal treatment plan for us.  We discussed briefly the options of Remicade IV infusions or Humira injections.  After the induction phase (6-8 weeks) for whichever treatment plan we chose we could then move toward “home” treatments.  This means we would either all get trained to administer shots to Kane OR he would be able to get home infusions.

I knew that eventually Kane’s Crohn’s disease would get worse.  This was always going to the next treatment plan for him.  I just truly believed we would have more time before it came to this.  I thought we had at least 3 more years before we had to take the next step toward a more intense treatment plan.  But we don’t have anymore time.

I could be a mess and let the fear of the unknown take over my thoughts, but I refuse to do that.  I KNOW Kane is still much better off than other kids his age; his organs are still intact.    After he woke up from his anesthesia I had to tell him the results.  He kept asking what he was doing wrong and saying this wasn’t fair.  And he’s right, this isn’t fair, but this is life and it isn’t always fair.  We have to make the best of the life we have.  Yes, his feelings and fears are valid.  I too share those same feelings and fears.  But what keeps me going is knowing that we will overcome this new challenge and get him healthy again.  We’ll do it… TOGETHER!