Wednesday, June 16, 2010

Woah. Day one of chemo...

My brain and my eyelids are at war.

(repeat for at least 16 hours)

Really, this has been a good day in the fact that chemo has started, and it has been the most horrible day because chemo started. As I was sitting in the sedation room and watching my baby's spinal fluid drip-drip-drip into a vile (I stared down every drip with a mom glare praying, "no cancer cells in that cancer cells in that one..."), I saw the Cytosine Asaboside being injected into the spine, and finally Vincristine being injected into a new IV, each bout of chemo medication drilled the reality deeper into my mind and heart. This will be our life for over three years. The oral medication, Dexamethasone, is the one that has morphed my gentle baby boy into a little growler. That has been the hardest to witness. Everything is "NO!" or "I DON'T WANT TO!" I guess this is what it is like to have a "normal" three-year-old.

Anyway, I think I let my anger over reality get the best of me today. My heart was under siege and I was ready to battle. I hated seeing my helpless one at the mercy of strong medications. I had to give myself a time out. I practically ran the halls of the hospital and I was halfway hoping that I would get lost. The other half wanted to get back to my family and just love on them. I am blessed and LUCKY that this is treatable, that I have such a support system, that I know God is in this. When you walk forward into the dark and only look down, a tumble is inevitable, right?

Just ten minutes ago, Gideon woke up screaming and kicking and flailing in pain. His screams were sharp and intense. I have never heard that or experienced that from him. He had to go the bathroom, and the peeing was painful to him (chemo pee is pretty toxic). He proceeded to pee all over the floor (IV is a bladder filler-upper) and then refused to get changed. It wasn't the getting dressed he was fighting, he was physically trying to kick the pain's butt. In the process, he kicked me in the face. I stumbled back a little and there was a moment of clarity in his eyes. Still sobbing, he squeaked out, "I'm sorry, mommy!" and cried harder because he thought he hurt me. I cradled him in the arm that was not pee-soaked and sang the first thing that came to mind: Bob Marley's "Three Little Birds." He calmed down enough to take medication for the pain. How I didn't sob with him while his body fought these hellacious demons, I don't know. I was ready to scream at anyone in my direct line of fire...and the anger in me began to bubble. Why would this sickness afflict ANYONE, let alone an innocent honey of a child? Then, another miracle. A music therapist named Emily walked in (she reminded me of a beautiful friend of mine, Emily Gregory Miezio, with her big brown eyes and quiet voice) and asked if she could sing a song to calm him with me. How could I unleash fury on this sweet soul? I couldn't. I must have looked like a ragged beast. She pulled out her guitar and softly began to strum "Jesus Loves Me." She sang every verse twice, I think. Then she played an instrumental version until she was sure he was fast asleep and out of his fits of agony. How lucky am I that she showed up? Blessed, really.

So that was the most heart-wrenching thing I have ever witnessed, and I know it is only the first... But then I am cheered by the people who have given my heart such a boost. Here is a SHORT list of the angels-in-the-flesh of the day:

1. Coach Bill Cubit of the Western Bronco football team came to visit with Brody. He brought footballs, signed autographs, Western backpacks, hats, and more! Not only that, but he invited Brody to come to be his special guest for football training this coming week. AND, we get to go to a game this fall in his special box seat (less germs)! He then threw the football with Brody in the hall and promised that other football players would be in to play with Brody!

2. And they DID! Western football players played catch with Brody in the hallway of the hospital. That boy couldn't stop smiling!

3. I have high school friends designing NO SHARKS T-shirts to purchase and the financial gains will be donated in Gideon's name. Another high school friend offered to help with MUCH of the cost to do that...

4. Ann Thornton is going to run the Leukemia Marathon in Gideon's name in October! She is hoping to raise around 500 dollars in Gideon's name.

5. Friends bring comfort in so many forms: promises of prayer, posts on this blog, cards to the room, meals... it goes on and on. I am realizing how beautiful the human soul can be! Let me tell you, I would rather wear your generosity and love around my neck than the most expensive Titanic blue diamond. (<-- a little bit of a tangent, but my word-finding capabilities are leaving me... I hope you get what I mean).

****At this moment, Brody is having his BIRTHDAY PARTY at Pirate's Island with a couple friends. I am praying that they are having the best time ever!!*****


  1. Your honestly is so powerful and the pain to potent that we feel it right along with you. We have walked this painful road called by another name when our oldest daughter had a massive brain hemorrage and I too raged at the monster that attacked my child. I too tumbled, but only when I looked at the monster directly and not through my Lord and Savior and only when I forgot the promises, that God never leaves us, that nothing is impossible with the Lord, and He has a purpose and plan for everything He allows.
    We ache for you and pray with ceasing for all of you.
    In Christ Matt and Gena Gilligan (Carrie Leonards Mom and dad)

  2. Hi Amanda,
    My prayers are with you, your husband and your boys. I pray that Gideon remains strong in his battle with this horrible disease. I pray for full and complete healing for Gideon. I pray that Brody finds comfort & peace when those difficult-to-understand moments come. I pray that your moments of hope and faith outnumber the ones of fear and doubt. As a mom of a three-year old myself, I can only imagine the agony of seeing him go through spite of that, your faith is so strong and it is so evident in your writing - you are truly a witness for our Lord. You are all held closely in our prayers. Rachael Goei Vander Heide

  3. Amanda,
    I am at a comlete loss for words. Your strength and courage are amazing, and Gideon is just remarkable!! We are praying, praying, praying for your family. The Lord has you in the palm of his hand and will guide you. Please let us know if there is anything we can do for you.

  4. Dear Amanda,
    Your senses are so powerful...I hope writing everything down is a good release for you. Your sweet boy is going to have to suffer to get better and that is maddening. I hope the medicines they have to help with the side effects help. We'll continue to pray for strength for all of you, and peace to get rest and hope for the good days which will come after this awful season is over.
    Shauna Collison

  5. Sweet Girl, my heart breaks for you as I read. I cannot imagine what you are going through to see your baby suffer like this. I pray God's mighty promises over you: "when you walk through the water, it will not sweep over you; when you walk through the fire you will not be burned...for you are precious in My sight and I love you" (from Isaiah 43). We send our love and constant prayers, Aunt Betsy

  6. Lean hard on HIM! xoxox....prayers....xoxoxo....prayers......

  7. Amanda,

    We don't know each other, but I went to HS with your cousin, Matt. I've read Gideon's blog and am confident that there is no other option but victory for your warrior, with the love and support he has from his family and friends. I know it seems odd that a stranger would comment here, I'm sure, but the Bob Marley song you sang to Gideon touched me. That is a song that we have sung to our kids since they were little, and it's come to mean so much to us. It made me smile to hear that it brought comfort to someone else as well.

    It may not mean much, but you have love and light coming from North Carolina as you fight this battle.