Author: Mardon Hickford

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

Tonight, I am sad.  No, actually, I’m MAD! I’m heartbroken and MAD!

Cancer… I’m SO mad you!  I’m mad that Jake has gone thru so much and still has so, so much more.  I’m mad because of what we are about to put him thru, that NO little boy should EVER go thru. On that point we will go round later.  MOSTLY……. I’m so very mad that you took another of our babies.  I’m so deliriously, tearfully mad!  I can’t stand myself, I can’t see the keyboard for all the tears, I’m so ANGRY!

This much I tell you… I speak for all of us cancer parents… this makes us fight harder. Stronger. We will rally.  We’ll stand arm and arm and when the dust settles and our strength returns, we will line up and we will FIGHT you harder than you know. You won’t see us coming, much like the thief in the night that you are. We will come together and we will be sure that our babies are not lost in vain. We will share their stories, we will rejoice in their short and precious lives, we will PRAY!

You break our hearts and instill fear, you bring despair and you steal the loves of our lives but what you don’t know, is that we are teaching our children about Love. We are teaching them about the One that is Light.  We are teaching them that you will not steal their spirit… that they will live on… painlessly, happy, and FREE!  We are teaching them that when they leave our arms, they will run straight to JESUS.  And that cancer……..you WILL NEVER TAKE!

Rest in love and perfect peace, sweet Sean.

This song has been speaking to me all day. It’s beautiful and fitting.  Sing of Your Glory Now by Bebo Norman  http://www.youtube.com/watch?v=z3wa89TU3WU

No easy way to start this… no NED. Not yet. I have to admit, we’re so very disappointed. Not in Jake, not in our treatments or Docs or in anything we have done or could do… just disappointed that Jacob must continue to endure all of this. Saddened that God’s will and mine just aren’t on the same page right now and that I can’t see where all of this is going. I like answers but there are none to be had in the great scheme of this disease. We are getting closer. Our Docs are very happy with what they saw. I believe by their excitement, that his results are better than what they anticipated and when we put aside what WE wanted, the news really is positive. But the bottom line is… we are going to Dallas. Jake will begin MIBG treatment in a little over a week. There is a lot to do. There are lots of little

details with the kids and back-to-school and travel arrangements that need to be worked out. There isn’t much time to wallow but I kinda want to. Some days it feels like a part of our lives are just gone. Lost. So tonight we might wallow a little and tomorrow, we’ll pick ourselves up by the bootstraps and move on. Here is what we learned today… there is still disease in his skull, one of his hips, the knee area that was our initial symptom of disease is still pretty dark, and there are still areas in the legs. The biggest praise… NOTHING present in the liver! The spots are gone! And the origination spot in the abdomen where the tumor and adrenal gland were removed continues to be clear. There really are lots of praises with these tests. It was a week full of zig-zags. We went in Tuesday for Jake’s bone aspiration only to find that his platelets had dropped 30 points and without a transfusion he couldn’t have the procedure. We jumped that hurdle and yesterday when they placed the IV, it had issues. We actually had to take him off the scan table and back to the room to work through that. His little veins are so done. We pushed thru and it worked for us eventually only to find that it had blown today when we were ready to use it again. We had to go for the other arm. It didn’t want to take at first either but with a little digging it finally came thru. (I just want to cry as he screams while they have to dig in his veins to get them to work.) Today, we tried something new for his MIBG and didn’t sedate him. It was a lesson. It was 50 minutes and he did well for a good part of it but when they had to tie his arms down, his head straight forward and bring that machine about an inch from his nose, he lost it. And quietly, I did too. He’s not quite ready for that one without sedation. If that part of the scan was a couple of minutes it would be fine, but it was twenty and he’s only five. He recovered and tonight he’s a happy boy… all is forgotten because of a special trip to Toys R Us from a very special little friend – thank you Eli! So now we keep trekking along. I ask for prayer over our trip to Cook’s Children’s Hospital on Monday. We will go for the day to meet our team there. And here’s the BIG ONE… please start praying over Jakey’s Blankedy. We found one that looks very much like his old one but so far he wants nothing to do with it. This could be the hardest part of this treatment as this is where so much of his comfort comes from and it won’t be in the room with him. I also ask you to continue to lift up our little friend, Sean. He is hanging in there strong and brave, and we are keeping the FAITH. Miracles happen! I don’t think we can ever express how much it means to us to have you all walking this road with us. Your continued blessings of your prayer and kindness just keep coming and we are strengthened by your love! I ran across this tonight – a little God Wink in my moment of tears and thought I’d share…

Worry does not empty tomorrow of its sorrow; it empties today of it’s strength. – Corrie ten Boom

And so I find comfort in these words and this is my song of choice tonight…. http://www.youtube.com/watch?v=u1JBSQMkQEo

What Faith Can Do by Kutless. Wendy, this is for you too, my sweet friend… dreams that move mountains, hope that doesn’t ever end.