Bald & Blessed

Here is part of our bald and BLESSED family… on Saturday, we attended the Dynamo Game where they were hosting the Bald Is Beautiful foundation and their annual Head Shave for Childhood Cancer event.  We knew that Cameron and Daddy were going to shave, but what came as a beautiful surprise, is that Emma and Kate joined in also.  I’m still in awe. It’s something that they will all remember forever and we are so, so proud.  The kids keep saying how soft their hair is and rubbing their heads – makes me smile everytime. These are the amazing moments of love and encouragement that restore the spirit and fill the heart to keep pushing through the hard moments of this journey.  And as for this journey… we met with our team at Cook’s on Monday.  When they took us back to the exam room, we opened the door and there were dino toys all over the exam table… they were READY!  Our Child Life ladies were ON IT!  A couple of things were for him to take home, and the others will be in his room when we arrive next week. What a way to relax Jake.  We can thank Saraben for being on top of things and communicating with the Cook’s team on the in’s and out’s of Jake.  We LOVE her so much!  We learned a lot… and we left with a “to do” list (ie EKG, ECHO, some medical role play to do with J).  We have to start mentally prepping Jake on all the tubes, chords, sitckies that will attach to him all week.  To give you an idea… he’ll have 2 IV’s, his port will be accessed, a blood pressure cuff, sticky heart monitors, finger pulse ox, and a foley catheter.  It’s a lot for anyone, but SO MUCH for a child, especially a child who already has “sticky issues”.  It sends him over the top to have the pulse ox and the chest monitors stuck to him.  It was definitely a trip full of information and we left with a major dilemma that must be solved this week.  Jake has an allergy to contrast.  Which type we aren’t completely sure since his CT and MIBG are always done back-to-back.  In October, he had a bad reaction during scans and the decision was made to always pre-medicate him and not take any chances. Because he’s medicated for both, we’ve never discovered the specific culprit. This treatment calls for 200 times the dose of a normal MIBG contrast scan. There is no way to ever “pre-medicate” to offset that kind of dosage. So we are left figuring out which it is.  If he doesn’t have a reaction to the MIBG iodine, we can assume it’s the CT contrast and we go forward. If there is a reaction we have to pull him. While this will give us answers, it subjects him to medications and possible side effects.  They really believe it will not be the iodine, that the CT is usually the issue, so we are banking on this. You can see in the pic what it did to him – this is his back. It was on his chest and forehead, as well. A dose the size of what they have to administer could cause anaphylactic shock. So we start this little “lab experiment” later today. This disease is just so monstrous. About the time you think you are gaining ground, your feet slip again.  But Jake is in GREAT spirits and feeling really well, and we are so THANKFUL and BLESSED for that. I sure wish we could fast forward 10 days and this was all done.  But I keep reminding myself that this is just a moment in time and we will look back on this in about 10 days with it all BEHIND us.  I ask for your continued prayers for Rod and Wendy Kardorff and their family as Sean’s funeral was today.  The Priest said that Sean loved the candles on the alter, he felt that one day, he’d be one of the alter boys and he pictures him doing just that in Heaven.  I thought that was beautiful.  Please pray that as all of their family and friends gather around them, they are comforted and find celebration in the wonderful life and love they shared. “The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever.” 2 Timothy 4:18