Wednesday, June 30, 2010

Poop, out... Gas, in.

So, there have been many blow-outs over here, which is great. Gideon had a bone marrow extraction yesterday and another plasma transfusion, and it looks as though we are on schedule in this cancer fight. Gideon's doctor wasn't ready to give him his Vincristine chemo treatment through his port since that drug constipates even more. We went back into the hospital today, but Gideon was in massive tummy pain, so a stomach Xray was ordered. We postponed the chemo for tomorrow. I can't believe he is still firmly planted on the ground after seeing that Xray. There are more gas balloons in there than there were in the movie "Up." Poor guy. All he wanted was a hamburger-hamburger-HAMBURGER! on the way home today. When I got him one, his tummy protested and something I think I will dub "a double blow-out" occurred in the car. Both ends = disaster. After he was done puking (and pooping - we made it to the toilet for that part, at least), he asked, "Mommy, could you get another burger for me?" We have spent the rest of the evening in the tub. By "we", I mean Gideon. This seems like the safest place for a walking bomb. Worse, a walking double bomb.

It has been an interesting fight against this tummy issue yesterday, as I'm sure you can imagine. I tried it ALL. My last straw was some prune juice. I poured him the juice and got a handful of glitter. I told him the fairies made him this magical tummy drink. It wouldn't taste very good because it was made out of flower dew, but it would fix him. I showed him the sparkles to drive the story home. He drank it all and did his business right after that. He yelled, "GOOD JOB, FAIRIES!" I know, I know... magic. Please don't roll your eyes. Really, though... The kid has been forced to deal with adult pain and adult issues. I am going to keep magic in his life for as long as I can. I am always blunt about the doctor. I come right out and tell him when he's getting shots, when he's getting the "hot" medicine, when he is getting sleepy medicine... all of it. I never want him to feel as though he can't trust me. BUT, fairies made that prune juice. End of story.

I guess that's not really the end of that story. When he talked about his fairies, he said he had an angel, too. I asked him how angels and fairies are different. This was exactly what came out of his three-year-old mouth (and I'm not changing a word), "Angels work for God. Fairies are magic." I asked him what his angel does for him, and he said, "Fights my sharks and hugs me when I sleep." Deep breath and a slow exhale.

We are still having our late night feasts, and Gideon gained two pounds since yesterday (and this was after the fairy generated poop storm). His cheeks are getting fuller, and his hair is getting thinner. I had a horrible and embarrassing breakdown about this whole hair situation yesterday. While we were getting ready to leave, I wiped Gideon's hair out of his face and three curly strands broke away from his scalp. I didn't let myself think about it, but as Gideon and I were leaving the clinic, there were two little kids in the waiting room with bald heads. It jolted me back to the reality of all of this. I feel like I am breath-by-breath these days for my own sanity, but when I see evidence of what we are fighting and what is coming, it overtakes me with those anchors. I was sinking fast and I hurriedly carried Gideon into the parking garage as quickly as I could. To mask my sudden sob, I started singing. Really loud singing so it echoed in the parking garage. I had a lot of vibrato, and Gideon started to sing along. I'm sure we were stared at: the crazy singing lady and the masked child (he has to wear a face mask in public... we never go anywhere public except for the clinic), but again: I don't care. I guess I am telling this story so that we will all be slower to judge when we see peculiar characters running around town. I am one of those.

Once we were in the car, I felt a surge of guilt sweep into my heart. I was crying over hair loss and there were paintings hung on the clinic's walls depicting little angels who didn't make it. Tiny children whose Leukemia took them Home. I was crying over something as trivial as hair. I still had my angel in the flesh. Shame, shame, shame. That was the mantra in my head.

So, for my own good we are giving Gideon a big-boy haircut tonight. Jen Wassink will do it (she also HIGHLIGHTED my hair this morning and the frumpiness melted away. She is a hair genius, and you should book an appointment at MSpa to see her. THANK YOU, Jen!). Once the boy haircut is complete, more hair will fall and then we will shave it. I need this gradual. I can't go from curly-top to nothing. While Gideon was in the tub today (most of the day, to be honest) I explained what was happening to his hair. He started to cry and said, "No more CURLS?!" I think this upset him since his curls are what people on the street stop to compliment him on... I explained that he would look like Caillou for a little while (google Caillou if this cartoon is unfamiliar to you), but then it would grow back. He stopped crying, said, "Oh! Okay!" and that was the end of it. When grandma dropped off Brody today, he said, "Grandma, I'm going to be bald like Caillou." I need to learn how to accept things the way he does. The boy teaches me a life lesson daily...


  1. I am SO glad Gideon's angel is hugging him all night. He clearly knows that God is looking out for him! Beautiful!

  2. We all need magic in our lives and I believe in magic, so bring on the fairy juice and anything else the fairies can provide that beautiful boy!

    I also believe his view of Angels vs Fairies is right on target!!!

  3. You are not the only one he is teaching life lessons to! Hugs!!!

  4. I love the idea with the Fairy juice!! I am right there with you in believing in a little magic. We all need to add a little sparkle to things sometimes. :) I also love Gideon's explaination of angels vs fairies. That was truly priceless. He definitely is surrounded by God's love. I am so glad that his angel is there to give him hugs at night. Perhaps she helps to ease some of his pain along with fighting those sharks! Keep singing and know that you and your family are in our thoughts and prayers. Hugs and kisses, Kelly Henry

  5. Quick thinking on the Caillou thing Mom! Good Job! I'm so glad he finally pooped. I'm so sad to tell you that chemo does a number on your intestines. You will become a pro at dealing with it in a few weeks tho.

    The cancer clinic is SO not the place to paint children angels...sigh...people try to be well meaning but sometimes they just don't think how someone newly diagnosed would feel.


  6. I'm constantly amazed at you Amanda! Or at God IN you! Your family is very close to the heart of God and that is obvious in Gideon's heavenly perspective. Praying for ALL of you!

  7. Every time I get caught up on your updates, I feel privileged that you are sharing this journey. I mean, I have a definite remedy for constipation now, have been theologically educated by a 3 year old regarding angels and fairies and will be googling Caillou lickety split! You really rock Amanda... as people in the parking garage are still commenting on, I am sure. ;) You make me laugh and cry. And see God. Praying praying praying.

  8. Our family is praying for you and your journey! Our son Trevor(now 5) just completed treatment for A.L.L. after being diagnosed at 2 yrs 4mos. It will be rough for a bit, but it does get better...keep the faith!
    God Bless

    The VanSkiver Family

  9. Amanda I am breathless. As I read the words of your heart I find myself barely breathing. Thank you for allowing us to walk alongside and for the courage to speak the truth and somehow-through the strength of God-you and Gideon remain sparkly! I will be keeping you all in prayer before God the Father and thanking Him for loving angels who keep constant watch over your sweet boy and who, I think, are fighting sharks for all of you! :)
    Cindy H.

  10. It's odd the things that moms cry about, isn't it? I mean, we take some of the toughest emergencies, and hardest blows with calm for our kids, but turn around and become mush over some of the seemingly trivial issues. Sweetheart, you are doing beautifully... loved the magic fairy juice... your boundless imagination never ceases to amaze and delight me!! And it's clear that you passed that along to your kids - what a wonderful connection you will share as they grow! I'm sorry this comment is so disjointed, but I'm running on "stream of consciousness" today, and the stream seems to be full of boulders, LOL! Okay, enough drivel for this one, on to the rest of what I've missed lately!!

    Still praying as hard as we can (and my sister's prayer group in Florida is in on it too!!), and sending as many positive vibes as we can your way!
    ~~Aunt Nancy~~