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...

Praying for Poop (yes, you read that right)

First, some business from Ann Thornton:


Hello Everyone!
I wanted to send a personal letter to everyone. However, I am under some pretty serious time constraints so I thought I would use technology to get the message out. As many of you know, my BFF, Amanda is helping her youngest son, Gideon battle Leukemia. He was diagnosed with ALL approximately 2 weeks ago. Gideon is the sweetest, most fun-loving kid you will ever meet. He reminds me of my BFF and it breaks my heart that he has aged beyond his years in these 2 weeks due to the treatments that will save his life.

I wanted to do something to help. That is why I have decided to complete a 1/2 marathon with the Team in Training. TNT raises money to fight leukemia and lymphoma. The money we raise goes to the Leukemia and Lymphoma society, which funds research to eradicate these terrible diseases.

I am not really a fan of running. I primarily run to be able to play hockey and soccer, the sports I LOVE. I have done my fair share of 5K's and 10K's and never dreamed I would be motivated to complete a 1/2 marathon. When I found out about Gideon's diagnosis, I wanted to join in his fight. I figured pushing my body to complete a 1/2 marathon would figuratively help me join in his fight. While his body is being tested and challenged by the chemo and the leukemia, I will be testing and challenging my body during the training for the race. Not only will I be challenging myself, but I will also be raising money to fight this terrible disease.

This is where you can help me. I need to raise $500 by July 13th and $1250 by September 14th. If you are willing to support me (and ultimately Gideon and all the others who are fighting this disease), please send a check made out to The Leukemia and Lymphoma Society to my address: 1679 Drayton Ct. Portage, MI 49002.

Thank you for helping me and for helping Gideon. You can follow Gideon's fight by viewing his mom's blog: www.gideonschripsema.blogspot.com

Sincerely,
Ann Thornton

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Disclaimer: If you are easily offended or have a crazy weak stomach, please do not continue.

Do disclaimers really work? I know they only make ME want to watch more closely. I guess subconsciously I feel like disclaimers are a dare. BUT, if you are still reading and you really do have a weak stomach, maybe you should stop.

See what I did there? That was a double disclaimer...

Okay, so here is the Gideon update: He is eating like he has never eaten before! The past two nights he has woken me up at 2:45-3 in the morning to make him food. I knew the steroids would do this, and this is MUCH better than him puking and puking and puking some more. Two nights ago it was tomato soup (which he calls "tornado soup" -- and you're right, I don't correct him. It's too cute) and grilled cheese, and last night it was sausage and eggs. At least he's not requesting bags and bags of potato chips, right? Anyway, I have been gladly shoving food his way, but the kid is NOT pooping. He is shoveling it in at a constant rate, and then cries about his belly hurting. He ends up requesting his bed. He then sleeps most of the day (only to wake to shovel more food in).

As my family can attest, I am kind of poop obsessed when it comes to my kids. When they were babies, I studied each BM to see how they were feeling and if they were getting enough. I charted their poop and noted the color as newborns. I know, I know... A little OCD for a type B girl, but that was my only way of knowing if I was feeding them enough since I didn't use formula and bottles. Plus, they are my babies. All moms have Type A tendencies with their dependent itty-bitty ones. Poop is one of the first signs of being sick, I am sure. This probably explains why both of my boys are so very proud of their healthy and humongous poop piles, and why they call me over to see them before flushing... that's another story.

So, now you know about my poop obsession. I am about ready to crawl out of my skin since Gideon has not pooped in two days. And his poop two days ago was minimal, at best. It was tiny and hardly there. I know many of these meds constipate, but come ON! He looks like a little malnourished child now. His belly is hard and sticks out. I have been giving him his daily dosage of Miralox, but to no avail. It only seems to hurt his tummy more. And since his feast at 3 a.m., Gideon has said that his tummy is very hungry, but that it hurts too much to eat. He actually sleeps more than he is awake, and I feel like that is his way of dealing with the pain. Sick admission: I would pull out that poop if I could. I am going crazy over here because I can't ease his discomfort in this one. Even my cheering him on while he sits on the toilet isn't working. The whole "Let's get the poop out so that they can slide down the poop slide to Poop City!" isn't encouraging him at all like it once did.

So, the headaches are gone and the bellyaches have moved in. It feels like we trade one pain for another. Once the Oncology nurse calls back, I will do whatever she says to help him! For now, I will pray for poop. Have you ever done that before? Well, there's a first for everything and your prayers are working. :)

The first thing neglected when tragedy befalls you: the feet.

Since this blog is all about honesty, I have another admission: it hasn't bothered me a bit that people have seen my tired dogs (feet) and the ghosts of care that once was. The slivers of polish were reminiscent of the days when I actually cut my toenail cuticles, exfoliated, and polished. BUT, there is something wonderful about having feet that do not have the same consistency and texture as concrete...

News: My toes are happy and bright thanks to two of my oldest and dearest friends (and I mean "oldest" in that we have been friends forever), Kristen and Jaime. They drove out west from my hometown of Milford and have spoiled me rotten. I am now officially a brat. We dined at Food Dance Cafe and they had a foot intervention and pedicured me up at a spa nearby in downtown Kzoo. Mmmmm... lovely, lovely fluorescent pink toenails are happily peeking out of my sandals now. Once we were home, they forced me to take a nap while they played with Brody and Gideon was still sleeping. I thought there was NO WAY I could fall asleep (especially since I took my dosage of grape "Five Hour Energy" today), but my head hit the pillow and it was magic!

Other magical moments included the fact that Gideon slept through the night without pain, but woke up around 6 am. He is getting braver and braver when it comes to taking his medicine. We have a red chair that he sits on and he whimpers up until go-time. Then, he puts his game face on and swallows the grossness with gusto! When I say, "Medicine time!" He begrudgingly moves his little red chair into the kitchen and watches me as I concoct his shark-fighting elixir. His little eyes look at me with a sad little shadow, but he knows we are doing all of this out of love.

He also begged me to attach a smiley-face paper clip to his shirt. He said, "I will smile more with it on." The paper clip is WORKING. More glimmers of sweetness have been gracing us than hauntings by Chemically Altered Gideon. I think the paper clip will be on every shirt he wears from now on. It's the little things... Remember? I believe in magic and miracles. The pegasus will happen (one day).

For now, Gideon's tummy is still really bothering him and it breaks my heart the way he paces (waddle-paces) around the house while grimacing and quietly moaning to himself. I am doing all I can to distract him from the pain, and somehow we will overcome the hurt.

I always feel like I need to balance sad news with beautiful news... Sarah Rypma had her school of ESL grade students make Gideon cards -- SO MANY CARDS! They are pieces of art with beautiful messages inside. Gideon and I poured over every single one... It took us two hours to go through them all, but Gideon never got bored or distracted by anything else. His little face lit up as he pointed out smiley-faces, swing sets, balloons, hearts... he had a comment (or ten) for every single card. I was (silently) sobbing to see his cheerful smile. Thank you, Sarah. Thank you, students! We will treasure your art bursting with love!

Brody capped off my great day with a bike ride - just the two of us (I know you know that song...sorry. It'll be in your head all night). He said to me, "You go first, mommy. Know why I'm letting you go first? 'Cause you told me it's nice to let girls go first. I'm doing it like you said." He also warned me about upcoming puddles so that my new toes wouldn't get dirty. What a honey. I am so lucky and feeling lots of love...me and my pink toes.

Spiders and Penguins and Plasma...

I wasn't completely transparent about yesterday... There was a lot of sleeping and even more puking. Gideon's headache from the night before extended into his day, and I couldn't tell if it was the chemo or the headache making him sick to his stomach. Cancer and cancer's treatment (SO many medications and treatments at once) have too many factors to pin down the whys and the how-comes... It is hit n' miss most times, and OH! I feel so sorry for those people who are totally and completely linear in thinking and cancer falls into their lives. Maybe not falls, more like bombards or explodes into their lives. It has got to be so utterly frustrating when the laws of cause and effect are compromised for the If...then... mentality. There are too many "ifs" and even more "thens". Variables cannot be isolated and tested. There is so much guessing going on... Again, I'm blessed in that I am a sporadic and whirlwind thinker. I truly look up to those who can stay focused on a straight line, but my brain tends to drift to the peripheral "blue highways" on the map of life ("blue highways" = Jack Ridl term). So, this trait that has often been a detriment in my life has ended up being a blessing in this area of my life: this battle for my son's life. The more I live, the more I am a total believer that nothing happens by accident. This girl is blessed to be a dreamer!

Another blessing is that Gideon was HEADACHE FREE last night and only woke up once at 3 in the morning to request Goldfish crackers and lemonade. So, we had a mini-feast. I was just happy he was EATING! Then, when he woke up, he pitter-pattered into the bathroom. (Sidenote: Since the Vincristine, Gideon has been waddling when he walks. It is adorable. I want to buy him a penguin costume - ala Shedd's Aquarium - just to smile the more he waddles... Maybe that's mean. So I won't. I'll just picture it in my head.) I heard him yell out, "MOMMY! There's a spider in here! Come see!" Now, let me give you a piece of Amanda history: spiders make me SCREAM or freak out or both. Give me a snake or a rat above a spider a n y d a y ! I waltzed right in and when I saw the furry (worst kind) eight-legged beast, I shocked myself when my heart-rate didn't even increase! Gideon asked me if we could let it outside to its web, and I said yes! I said yes. Let that soak in. We were home alone, the two of us. I calmly got a piece of paper, let the first-cousin of a tarantula climb aboard, and walked down the stairs balancing our new friend all of the way to the door. I remember the brief moment in this descent when I pictured the beast leaping unto my face and taking out my nose (which wouldn't be ALL bad...have you SEEN my schnoz?), but this didn't even make me blink. I was being a lover of earth and all its creatures with my son. And, spiders ain't NOTHIN' compared to your kid having cancer. So, black widow from our bathroom, I hope you appreciate your new home in the outside world courtesy of Gideon. Spiders may stay. Sharks must die.

Gideon and I spent most of the day at the clinic. He was given an IV full of fluids and Kytrol (for the nausea), and then he needed a plasma transfusion. Yet again, I stared at that bag of plasma and tried to send out energy to its donor full of the most powerful love ever. Gideon is "B Positive" which is "BE Positive" -- even his BLOOD is giving me beautiful advice. So, thank you donors. You have no idea what a difference you make until it is your baby benefitting from the gift you gave!

Video tidbits

* This is a video of Gideon after his initial blood test. We thought it was just a safeguard. Thank goodness for safeguards or we would not have found out the truth for much longer!




* Gideon singing "Sparkly Eyes" -- a Gideon original. He is my composer.




* Gideon getting quizzed about the sharks in his blood..

George Clooney, you can do better than that.

Gideon's headache came back last night. This time we had those rice-towel ice packs ready in the freezer. Gideon and I moved down to the basement to sleep where it is coldest... The pressure of the frozen rice seemed to really help. Also, this gets me every time: Tom and I have taught Gideon how to breathe deeply when he is in pain. So, all night I heard deep inhales and slow and shaky exhales weighed down by stifled screams. Three-year-olds are supposed to let loose the cries, but this guy has had to take up adult measures to deal with adult-sized pain.

I have to say, since Gideon likes to fall asleep sitting up and against me when he has these headaches, it is difficult for me to fall asleep this way (ninety-degree angles are no fun). So, I drifted in and out of consciousness and honestly had the most realistic dreams. One was of George Clooney. He was sweeping the floor around me in some diner with pleather seats while Gideon rested on my lap with the ice pack headwrap. I asked George, "Do you have any other advise as to how I can get these headaches to go away?"

He answered, "Keep changing the ice packs so that it stays cold."

I guess I was feeling a little gypped by Captain Obvious advise, so I chortled, "That's it? That's all you got?"

He stopped sweeping for a minute, looked towards the ceiling and in his best ER voice replied, "Ummm... STAT!"

I woke myself up laughing at his clever little quip. Thankfully, Gideon didn't wake up. Please, don't check me into an insane asylum just yet. I may be having dreams of stars and conversations that actually make sense, but I have a few more lucid days left in me, I promise.

Gideon has wanted to sleep most of the day, except when he woke up this morning to request a grilled cheese sandwich (extra flat and extra crispy). Anything. I would have something flown in for that boy at this point, really. I also bribed him with a present if he kept his meds down. I have no shame and no pride. I'm not afraid of being judged, as long as the medication is storming out those sharks! He only spit out the meds once, but this was a vast improvement from yesterday! Victories! Add it to the victories list!

Speaking of improvements.... WOULD THE PERSON OR PEOPLE WHO BOUGHT GIDEON THE BRAND NEW BED AND BEDDING SPEAK UP?! Oh. My. Gosh. Really. It is gorgeous! AND, it is way bigger than a normal twin, so I have been able to snug right in there when Gideon asks for mommy to stay with him. THANK YOU. THANK YOU. THANK YOU! He loves the planes, and Brody adores the sports bedding! Once I get garage sale boxes packed up, I will be ready to tackle the room transformations. I cannot wait!

On that same vein: Cards, presents, and generosity have been pouring over us since this all began. We have adored every single thought and gift. Things got tousled in the hospital, and I now have no clue who sent what. We even had strangers who were following the blog, sending love in one form or another. Could you please know that we TRULY appreciate it all and are so overly thankful for all of you! In my darker moments, I reread your posts here or the cards and I feel renewed! God is using each one of you to shine through the darkness that creeps in sometimes.

(Crazy thing: I typed that last paragraph and the doorbell rang. It was the mailman with more love to deliver!)

Another victory is that Tom took Brody to Football Camp today as Coach Cubit's special guest. Coach Cubit, by the way, is extremely sweet and easy to talk to, and brimming over with generosity! Apparently Brody has been running drills and leading warm-ups. They even put him on a little team to play Lightning Football. Even though the camp is for 8 to 10 year olds, everyone is rolling out the carpet for our Brody! Tom said he is elated and beyond excited about this "perfect day!" I'm so glad he is having glimpses of summer with his daddy. He will never forget this day, I am sure!

Did I drop a steroid into my cereal?

My hair is falling out. In chunks. I have zits on my face that truly deserve their own solar system. After Gideon puked up his medicine and all other ingested food for the third time today, I left the room to go have some hyperventilating moments in the garage. Sometimes a positive attitude is so darn easy, and other times...well, I feel like going to the prison in Jackson and asking if there is an inmate who truly deserves to get his butt kicked. Then I would unleash.

Don't get me wrong, I KNOW I am blessed. I know Gideon will get better. I know there are others worse-off... But I'm feeling sorry for myself today, and I get an overwhelming sense of exhaustion when I look at Gideon's medicine schedule. I look at that one itty-bitty month full of medical codes for medicines and my mind automatically produces three years worth of medicinal calendars and I feel defeated. Yup. The negativity monster is rearing his ugly head and it makes me downtrodden and depressed. He says to me, "You can't even get your first full day at home under control! What are you going to do when it gets tougher?" Then he has me look at my precious, lethargic little one and says, "Look at him... He is not the same Gideon who once lived here. He is full of toxins and can't even go to the zoo! This was supposed to be the best summer ever! Full of adventures with your boys." Shut up, monster.

I am having a hard time since part of me feels like Gideon is made out of china: extremely thin and delicate china. He walks all wobbly and unsteady. He gets winded after climbing the stairs. I can tell he is in pain, and when I ask him what hurts he answers me like this, "Nothing. I'm fine, Momma. I'm okay." And then he curls in a ball and rocks back and forth. Right, kid. I SO believe you. :( How he picked up this line, I don't know. He's THREE.

So many of you have commented on my positive outlook and loving attitude. Today I have felt differently... I have had moments today full of laughter, like when I took Brody on an hour playdate and got to laugh with other incredibly amazing adults while our kids played. I felt like a person during that time.

I am thankful that I get out of these slumps in attitude pretty quickly... Nothing a twirl (or six) in the kitchen can't fix, but I guess I feel like I should really share a darker and more dreary Amanda with you all before you start to think I have a Pegasus in my garage that poops stardust. Let's be real, people. I get down. But.... I've gotta look up. Even if my prayers sound half-hearted and like Charlie Brown's teacher in my head, I'm gonna keep saying them. If nothing else, this experience has shown me that I can't depend on my own optimistic nature to get through it all. There are bloodthirsty negativity monsters just waiting for a weak moment. Trust me. I know...