Tuesday, November 13, 2012

Please, God.

Two.  That's the number of Gideon's appointments I have missed.  One was today.  I won't focus on the guilt I feel for not being there, or the fact that his port wasn't working and for the first time, drugs needed to be used to make it work.  No.  I need you all to know about the crazy huge dinosaur, most likely a ravenous meat-eater, that is sitting on my chest and refuses to budge.

"Wait to worry.  Don't think of the worst.  Stay positive.  Breathe.  Don't let your thoughts go there."  I used to say those things to people.  How clueless I was before, before cancer.  That was when I KNEW Gideon COULDN'T have leukemia.  When there was NO WAY it could EVER touch my baby.  Now here I am, with this perpetual mist that is thicker than any fog floating around my head right now.  It's a wet fog.  It adds to the dormancy of that dinosaur who is camped out on me and doesn't want to venture into this thicker-than-fog mist.  

Gideon's blood counts were off today.  They were the chemistries within his kidneys, to be more specific.  What does this mean?  Even while Dr. Lobel talked to me this afternoon, I feel like every word thickened the mist, and I became more jumpy with the unknown.  I'll just focus on what I know.

Here it is:
We will halt all chemo (besides his steroids) to make sure this isn't a crazy side effect of the drugs.  Dr. Lobel said he has never seen any side effect from drugs present itself this way, though.  On Friday, at 9:30am, Gideon will undergo lab testing.  If his numbers all-of-a-sudden are normal, we can look into the possibilities of it being an anomaly of a reaction towards the drugs.  If his numbers are still off, we need to search deeper.

This is when I asked, "What else could it be?  Could it be a relapse?  Could it be more Leukemia?"

Doctor Lobel said, "We want to rule that out."

That's when the dinosaur found my soul.  Not sure if he is still sitting or has decided to start feasting on my heart.  I really want him to go back into extinction.  Please.  I really don't know what was said after that.  Something about bone marrow tests down the road for more answers.  I can't be sure, though.  I don't know how much was a nightmare and how much was real.

Dr. Lobel did say this could be a fluke result.  My ears perked up at that, but then he added, "But I don't think so since the test was run multiple times."

Sweet-sweet-sweet boy.  Precious sparkle-eyed honey who doesn't deserve any of this crap.  None of it.  

Gideon and Brody were in my classroom while this conversation happened.  Tom's girlfriend hired a real hockey trainer to work with Brody this afternoon, and the boy was so excited.  It was surreal to have such happiness and pent up excitement skipping around me while this kind of conversation was happening.  Gideon, in the meantime, continued to draw smiley-faces on my entrance line in my classroom, so that "Kids  remember to smile as they come in the music room!" according to Gideon.  He hummed happily while he did it.

Once Brody left on his adventure with daddy and Heather, and after I ran into the staff bathroom to have a mini-breakdown (thank you, amazing Early El colleagues for showering love on me), I looked at Gideon and said, "Let's do something fun.  YOU name it.  Anything."

His answer?  "Let's go to Cracker Barrel.  Pancakes sound amazing..."

So.  I bought more toys in that store than I probably should have.  We ate pancakes and played Cracker Barrel "I SPY" for a couple of hours.  We named his virtual fish friends on my iPhone.  We shopped for plants to plant in my fairy garden...

And now we wait.  I wish I could say that those horrific memories of the beginning of this horrendous journey are not replaying in my mind, but I would be lying.

Truth: I believe in prayer.  I believe in miracles.  I believe that the more human voices joined together with petitions to our God, the better.  I am praying for good fishies.  May they be swimming so strongly inside of my boy.  Please pray with me.  No cancer sharks allowed.  Ever.


  1. Thinking of you and the boys Amanda! And so much love sent your way!!

  2. My thoughts and prayers go out to you and your beautiful boy that this is just a curve in the road and it will put you back on course soon. I am keeping good thoughts!

  3. Oh sweet, sweet Gideon....he captured my heart from the very start of all of this, and he has never, ever, not for one minute, left that special place in my heart. I refuse to let satan attack me with worry, fear, doubt, regarding these results. I will continue to place my faith and trust in God, for He is carrying Gideon every day. I know it. I feel it. I wish I could hold Gideon, hold you. Please keep us updated, with anything you know. You are the best mommy to your boys....and such an inspiration to so many. Jesus cover Gideon inside and out with your healing blood. Clean this precious child, Father. Clean him of all disease. Breathe life into Gideon. Surround him with angels always. Carry Gideon, carry Amanda. Bless this family. We look forward God, to the awesome miracles you will give to Gideon. Thank you for Gideon. Thank you Lord, for your promises. Love you!


  4. Wow..I have not met you or your beautiful son.. but I know the fear and pain that is ripping you apart... both our sons have battled and are still battling cancer, even though they are different, the worries are still the same.... just want you to know that we are in your corner shouting... NO CANCER SHARKS ALLOWED!!!!!! PRAYING, PRAYING, PRAYING!!
    Angel and Roman Booth

  5. I still believe in the power of prayer - and MANY are praying for your family. Love and comfort to your family.

    Mary Faber

  6. From a Mother that knows

    You are doing the best you know how and that is all he needs. As long as you are there loving him that will be all he remembers. I PROMISE!

    Going on TWO YEARS in Remission !!!!
    Sending only positive thoughts your way
    My son ALEX and Jessica a mother that knows

  7. Sending prayers and love your way!

  8. What a sweet, sweet boy you have! You are one of the strongest people I have ever met/known in my life! Keep on hanging on! I am saying lots of prayers for your sweet Gideon! HUGS!!! xoxo

    Lindsay McKay