Last Tuesday, Noah and I went to the hospital to have a scan done to see if his ommaya reservoir (port that goes into his brain) circulates as it should (through his entire CFS – to his spine, etc.) This test is for the Houston treatment. We were told that he would have to lay down for 3 to 5 hours and we thought “no problem – we’ve done that before in Shands.” I didn’t know that he couldn’t move at all – no rolling from side to side, no going to the bathroom (Thank goodness for the plastic urinal!)
The process started with a trip to the clinic to have labs. Just looking back, and reminding him, that this used to take up to 5 nurses and an hour of kicking and screaming at the top of his lungs. Shaking, vomiting, more screaming… on and on… Now…”Good morning! Where’s the needle? Porty and I want the needle!”
We get our blood work and head down for the scan. “Mom…I think I’m bleeding.” Blood was pouring down his side; we sprung a leak out of his port. His platelets were super low and we didn’t use a bandaid. Back up we go! Clean up and we leave with a bandaid.
So…time for the pictures. This one took me a little by surprise. Ready? I knew that they were putting dye into his ommaya reservoir, but what I didn’t know was that it was radioactive. Yes…radioactive isotopes…yes…just like The Incredible Hulk, “but not as many” they joked. What can I do but pray. God is always in control and he and I talk all day long. Sometimes laughing, sometimes not.
I gave Noah a fortune cookie for the first time. “Mom, you’re telling me that there’s a message in the cookie!” Mine said “It is best to consult others before taking unusual actions.” I was thinking…Like right now???? Noah’s said “Others seek your courage.” Took my breath away a little. Everyone involved was really wonderful. How they do that daily… beyond me, but they do receive our prayers daily!
He laid there, got a needle in his head with Hulk serum and, of course, watched Star Wars all day – with him comparing himself to Anakin, the good Anakin. They wanted him to be completely flat and the bed didn’t have a level; thank goodness for Dad telling me about an app! He held still for a hour, then another hour, then another, then another, then… off to the Lego Store at 6pm!!!!
This morning, we have an MRI at 10. Please pray for my sweet, sweet boy. Dear Heavenly Father help us today.
Thank you for your prayers!
Jamie Butler said,
January 30, 2012 @ 9:16 am
Bravest boy I know. Amazing. Praying today…praying, friend.
Brenda Appleton said,
January 30, 2012 @ 9:43 am
Amber or Dennis, please research a plant that has been tested and proven to be better than chemo in killing cancer cells without harming healthy cells. Sounds too good to be true, but can be purchased on Amazon. looks like a spiney football and can probably be grown in your yard. It is called Graviola Tree, or Guanabana in spanish, or Soursop in English. Fresh fruit can usually be purchased in Aaian groceries. Google it.
Michael Desantis said,
January 30, 2012 @ 10:15 am
Not only he’s brave, but he’s getting DC Super Hero Legos.
Debra Larkin said,
January 30, 2012 @ 11:02 am
Noah’s courage does not surprise us in the least. He is destined to do great things.
May God provide you with the strength.
Love,
Grandma & Grandpa Larkin
jackie murphy said,
January 30, 2012 @ 10:19 pm
He is an amazing little guy. My thoughts and prayers are always with you.
Judith Sauer said,
January 30, 2012 @ 11:53 pm
May God continue to hold little Noah in his arms and bless him and his wonderful family!!! You are ALL so STRONG and such an inspiration to so many people. . . . . especially ME! I pray for God’s continuous blessings to touch Noah and each of his family!!!
Aunt Donna said,
January 31, 2012 @ 6:31 pm
Big, brave Noah- only you could sit so still for so long! Way to go! Are you serious that YOU had to level the bed with your phone? Geez. We love you so much and talk about you and pray for you all day. Amber your grace and strength are unmatched- you are AMAZING!
Anne Gaillard said,
February 1, 2012 @ 12:06 pm
Go for it Noah!!! You are so brave!!! Much better than I would be, and I am an adult!!! Keep up the good work!!! You too MOM!!!
Kay , Jay, Lydia & Melaina Coomes said,
February 2, 2012 @ 11:23 pm
God Bless
Lynn, Adam, and Andrew said,
February 3, 2012 @ 2:03 pm
Thinking of you and praying always!!
Dave Harrison said,
February 6, 2012 @ 10:23 pm
Amber, you might like to show this story to Noah for fun: http://latimesblogs.latimes.com/technology/2012/01/two-teens-send-a-lego-man-into-near-space.html