Cancer-FREE

Cancer-FREE

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...

Monday, June 28, 2010

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. :)

Saturday, June 26, 2010

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.

Friday, June 25, 2010

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!

Thursday, June 24, 2010

Video tidbits

video

* 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!


video

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


video

* 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!

Wednesday, June 23, 2010

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...

Tuesday, June 22, 2010

Home.

First thing this morning, Gideon and I woke up to headache-free splendor. We celebrated with quiet snuggles and "I Spy." He had to be sedated right away so that there could be another round of chemo in his spinal fluid and another bone marrow extraction. It was a full day of being a little one with cancer since he had Vincristine injected into his IV and another transfusion. My boy was wiped out, but when he found out he could go home, a little Gideon spark lit up in his eyes.

It is getting progressively more difficult to give Gideon his oral meds. The boy spits them out and I have to guess how much he got and how much I should redo. We are working on getting this down to a science and I think I found the secret weapon: chocolate milk. After each dose of medicine, he can chug some chocolate milk to get the nasty taste out of his mouth. He will refuse, refuse, refuse, but as soon as I say, "GIDEON! You have to take this medicine to fight the sharks!" his mouth opens like a baby bird. He knows.

I feel like he knows too much. He has grown up far too much in the last twelve days. I brought home a sixteen year old and an infant all at once today. He is too weak and shaky on his feet to tackle the stairs on his own, but he is beyond articulate with relaying his feelings and thoughts. He cries and whines less, and discusses more. This, of course, is only true when he is the GOOD Gideon. When he is the chemically altered Gideon, he talks with the fist and in ear-shattering screams. Clear the room and hide if you are around and this Gremlin decides to take over my precious' body.

When Gideon was 'roid raging, he took it out on Brody today. I had to stifle my laughter when Brody said, "Gideon! This is NOT fair. I can't fight back because you will BRUISE!" Brody is still having his mini-breakdowns. He stubs his toe and sobs. He can't find his blue marker and he sobs. It has been his outlet. Probably the most heart quaking breakdown was yesterday when Gideon was getting his MRI. Brody and I were drawing in the waiting room and I noticed he had drawn a picture of Gideon in his hospital bed. All on his own he drew his port in his chest, IV line, IV tree, ID bracelet, and curly, curly hair. I praised his creativity and realistic portrayal, and then he said to me, "I drew Gideon with lots and lots of curly hair. Know why, mommy? Because soon it will be all gone." And then he started to silently cry. Brody has never silently cried, and I held him as his little shoulders shook and he tried the best he could to wipe every rogue tear before its evidence was left on my shirt. Dear Lord, protect this baby's heart, as well. When we prayed tonight, he said, "God bless Gideon and make him better" about twelve times. He was repeating it as if reminding God of the massive importance of it. He added: "I really want to be able to play crash bikes, tackle, and wrestling with him again." Did I mention how much this boy takes my breath away? He does. All of the time.

I know I'm tired when I write something in my blog and then get writer's block since a song pops in my brain and I can't think of anything else. Top Gun's "Take my Breath Away" ballad is echoing again and again in my noggin. Now it is in yours. You're welcome.

Anyway, HAPPY! JOYOUS! EXTRAORDINARY News!
1. MRI = clear
2. Migraine medicine = working
3. Gideon has a molecular genetic abnormality found in his chromosomes. That sounds bad, but it is truly fabulous! It is the "tel-aml gene" which is one that is even MORE conducive to treatment and remission. I have no doubt that this was a God thing.
4. WE ARE HOME! We ate Merideth's delicious chicken cashew casserole (Thanks, Mer!) and all of the laundry is put away (thank you, laundry fairies!)

Now..... I will sleep with an ear open and a puke bowl in one hand. But I will do it gladly because I am so thankful. Home feels like home, but different. It is another dimension of home. I don't view things the same way as I did when I left here, and my life has been drastically altered, but my heart feels at ease and I am certain we will come out of all of this better than when we started. Like I said, I can tangibly feel God's presence and I have never experienced this in a constant way like I do now. He is in control, so I'm not scared of this.

Dance Marathon tired, and Dance Marathon elated!

Where are my Hope College Dance Marathon Exec Board alumni? You know that feeling of floating just above your body and that adrenaline pumping through your system is all that is keeping you on your feet? Remember laughing and not remembering what was so funny, and that in and of itself made you giggle harder? We were up for 24 hours during Dance Marathon, and there were so many intense feelings surging through us all... "Giving Hope to Kids." I will never forget loving on so many families who came through our gymnasium in that period and how those children plagued with Leukemia gave me an extra dosage of energy. That was the most tired and the most elated I have ever felt at one time.

Until now.

Gideon had NO headache last night. None. He woke up early this morning and proclaimed, "My head is OKAY!" and "I need to poop." Oh. Both of those comments filled me with such relief. Yes, even the poop part. Chemo constipates, did you know that? Now you do. Just to be forewarned: I tell it like it is without much of a filter. You WILL receive TMI while reading this blog at some point... Anyway, I am so relieved that the ONLY reason I was up constantly was because Gideon felt nauseous and because his chapped lips were bothering him. These two things I was expecting from the chemotherapy, but not the intense pain. So, this tired girl feels like one blessed girl. Prayers have been answered!

Yesterday's MRI was clear on its initial look-through, we will find out the rest today...hopefully soon.

May I tell you a moment of human weakness? Maybe this was projecting my disappointments on a tangible thing, or maybe I was in the right to be shaking in anger when Tom told me this story... I was overcome by annoyance yesterday because of a carpet cleaning service (I will not mention names since I don't believe in bashing). Yes. My child has cancer and I was annoyed about the carpet. Tom was told to be home from 1-4 p.m. yesterday and that a service guy would be there. I manned the hospital. By 2:30, he was getting nervous and called...He was assured someone would be there. By 4 p.m., no one showed. When Tom called, they said someone came but no one was home. I bet you could guess how annoyed Tom was... They finally admitted that they gave the wrong address to the service man. Tom asked how they would remedy the situation since we were hoping to be taking our sick boy home the next day (today). They said they would give him some free bottle of cleaner, or something like that. Some people, even when told about your present difficult situation, could not care less. This was my first encounter with greed and it made me feel horrible. I was shaking, I was so mad. Projection? Maybe.

THANKFULLY, Tom called another company, Servpro, last night and this company not only promised to be there THE SAME NIGHT (having their people work overtime), but also charged HALF THE AMOUNT since they felt so horrible about how we were treated. Please, please, please USE Servpro if you ever need any cleaning done. At this point it wasn't about the carpets being cleaned, it was about good souls helping. Once again: My faith in humanity has been restored.

Okay. Off my carpet tangent. Ha! That kind of sounds like "Off my rocker" - one of my favorite phrases. I told you I was tired.

So....Today. We will focus on today and how grateful I am that Gideon just smiled at the nurse drawing his blood. Pain is not clouding his eyes, and my heart is brimming over. He will have a lumbar puncture again today, spinal chemotherapy, and a bone marrow extraction at 8 a.m. We are praying, and again: WE FEEL YOUR PRAYERS. They work, work, work!

Sunday, June 20, 2010

Sprinkling in magic.

Taken from my favorite poet, Jack Ridl:

"You know elves
live under your porch, that God loves
puppets, that the wind comes from a witch's
cave, and birds sing just to sing."
(excerpt from "Rainbow")

After the night of excruciating pain, Gideon woke up with an empty and hollow look in his eyes. I stared back at him and practically BEGGED for even the chemically altered/alter-ego Gideon to appear. Sure he can be scary mean, but I would rather have some spunk than emptiness. This version of Gideon was too much for my heart to take. Something had to be done about this Herculean amount of pain this itty-bitty body has had to endure.

And it was. We went for a CT Scan, and the turning point of our day occurred then. It was what I call a firecracker versus firework moment. The cannon releases the explosion into the sky, everyone knows something is coming, and we all brace ourselves for a thunderous explosion. There is instant relief to see a colorful burst of sparks instead of the jump-out-of-your-skin blast. OOoooo-ing and Ahhh-ing is a must. I'd say the CT Scan was a firework moment.

I told Gideon that we were on a mission. We were going to the Space Station part of the hospital and that he was going to be an astronaut. He would have to go through a hole and be scanned with red dots. There would be rocket launchers making noises all around him and spinning, but his mission was to STAY STILL. If he didn't stay still, he would have to be sedated (I didn't tell him that part, of course). We put on his Space Suit and strapped him in for blast-off. That was when the vacant expression transitioned into one of sparkling joy. His multifaceted baby blues showed their depths, once again. The process went flawlessly, and as we pulled him away in his wagon to go back to his room, he begged us for another ride! He was on FIRE for something. I said that we had to go back to our room because all astronauts get something special once a mission is accomplished. After finding the Child Life Team in the Children's Hospital, we begged for something spacey to commemorate the occasion. They came up with "Space Buddies" to watch and planet/star cling-ons for our walls. Once I decorated, Gideon laid on his pillow (still drained and sleepy) with his cloth over his head, but he was SMILING! Oh, the victory of a smile today made my heart leap back to my chest instead of constantly beginning slapped by my flip-flops!

The CT Scan came back clear, and I am thankful for that. We still don't have answers, but at least more bad news did not come our way. Gideon will have an MRi tomorrow, and hopefully we will know more. For now, we are treating Gideon's pain as if they are migraines. Migraine medication will be given throughout the night, so he'll need to be woken up for that. I'll deal with a grump monster who just wants to sleep. That's fine. As long as the main emotion is grumpiness and not pain, BRING it!

Let's also bring on the binge eating I have been hearing happens at this stage of the chemo! (I'm sure I'll look back at that sentence in the near future and roll my eyes at my naiveté, but this is how I feel at this moment. I'm a MOMENT girl, remember, self? And I am talking to my future self. Must end the parenthesis...now) So far, Gideon has been sinking into his skin even further and bones are beginning to be more pronounced. The Polish mama in me wants to FATTEN that boy up! As my baby sister Annie can attest (she witnessed this while she was here today), Gideon just groans and clamps onto his jaw with his little fingers whenever he has to bite into anything! This is one of those heart burst moments. Eating pains him. Something he NEEDS to do for survival hurts. Not fair, Leukemia. So, I begged Annie to go down to the Food Court to buy those all natural Omega-3 smoothies, "Odwalla." She came back with three, the sweetie. Magic worked for the CT Scan, I was going to make it work with getting nutrients in that little body.

I told Gideon that I was going to make him a Magic Potion. "When you drink it, Gideon, it will feel like swirls of magic dancing on your tongue. Then it will go down to your belly and tickle you there. Then, WHOOSH! It'll fight sharks that are making it hard to eat. Do you want to taste magic?"

His eyes got big and he whispered, "Yes!"

So, I poured the smoothie into a styrofoam cup and said these words as I sprinkled the magic inside with my other hand, "SMOOTHIE-WOOTHIE! Go down SMOOTHLY... Make the magic work!"

Gideon drank almost the entire bottle. It was magical. Let's add a layer to our miracle sandwich: He sat in his bed with the cloths on his head and talked to us. He chatted up a storm! Auntie Marianne, Uncle Greg, and grandma came and the kid cracked us up with his sweet banter and gestures with his hands (WHO do we know who talks with her hands?). I would watch that performance above all other concerts offered me.

He fell asleep at 7:30. This is a great thing since he'll have to wake up periodically for those meds. Pray that we ONLY wake up for meds and not for pain.

CT Scan

I really don't want to chronicle the night last night... It was worse than before. I will just say that we need answers to what is causing this excruciating pain. Please pray that the answers point us in a simple direction that will take care of the problem, and that this battle we are fighting doesn't somehow grow into fighting a newer monster. We are monstered out. So, we will be moving into the CT Scan area in less than an hour. I'm hitting the ground on my knees to pray. Easy answers, God. Please. Like, "Give the boy a blood patch and he's good to go." Or... "Let's switch up this chemotherapy medication with this one." Easy like that. THANK YOU! Oh, and if my boy needs to be sedated again for this process, please pray he comes through okay. I want to try it while he's awake. We are pretending he is getting scanned to go into space. Astronauts are cool. CT Scans are cooler. That's how we're playing this one.

Saturday, June 19, 2010

Seriously. We are blessed and lucky and loved.

It was a hard day...Not like yesterday. STILL. There are terminal children on this floor who do not have a chance. There are ambulances wheeling in gurneys of people who will not last the night. Leukemia is painful to watch and live through, but we are one of the lucky ones. When Gideon is over this battle, he will be such an inspiration. He will encourage others just diagnosed. He will live each day thankful for each breath he fought for years ago... How much more beautiful is a sunset when the realization sets in that you may have never witnessed it? We will not take our blessings for granted.

Blessings of the day:

* Jamelle Murray, a WMU football star, visited us this morning. He overcame Hodgkins Lymphoma and made Gideon smile through the pain.

* Gideon got over his chemotherapy injection shots pretty well.

* I went home and noticed cleaning fairies had descended upon our house. AND I took a nap. AND I danced like a fool in the kitchen. AND I took a shower.

* When I opened my mailbox at home, 35 cards came pouring out. Thirty five! I read every word and felt my soul doused in support and love. THANK YOU, thank you, THANK YOU!

* Brody spent the day with his GOOD FRIEND Brady Crocker.

* Ann Thornton brought me a sandwich and laughter.

* Gideon would only eat sherbet for dinner, but it helped to numb his aching jaw. (We'll take it!)

* Before Gideon went to bed he said, "C'mere, mom! I've got some kisses and hugs for you!" Nothing sweeter than unsolicited lovin'.

The media bombards us with images of evil and destruction, but I'm here to say that humanity is BEAUTIFUL and loving and giving. There is no doubt that the human soul is brimming over with all things exquisite. I am witnessing this and feeling this every single day. Grateful. Appreciative. Relieved that my boys will grow up in a world such as ours. You have all given me hope.

Yesterday was the amazing day, right?

It is true that there is a calm before the storm. Yesterday was the calm God knew I needed before the night began. I guess that can be read figuratively, but I mean it literally: last night was a storm. Oh. I'm rolling my eyes now. Here we go, full circle. Yes, there literally was a storm last night that knocked down trees and powerlines, but now I am talking about a figurative storm: Gideon's sickness. The English language can be so entertaining, and I hope I didn't lose any one of you yet. I am loopy from being over-the-top tired. I'll be simple: Last night was horrendous.

Why can we not determine the cause of so many side effects? Why do we not know if pain is caused by a Chemo treatment or the Leukemia itself? As you know, Gideon had jaw and face pain from the disease last night. Well, that "hot spot" spread throughout his body and he woke up at 2 in the morning screaming in agony (again). The pain mostly radiated from his head, so I made a 360 degree ice pack to press on it, but that couldn't calm him. They gave him morphine. Then more morphine. Then he was kicking his legs and said the sharks were eating those, too. I hate you, cancer. I loathe you. I despise you. If you were a person...

I should stop that rant. I'll save it for my private time.

We were having a family slumber party here, because Brody begged Tom and said, "I just want to know what it's like." That was verbatim. So, Tom and I could not say no. Now I wish we had. To protect Brody, Tom whisked him home. I really believed we would have a great night like the one before last, but I'm not in control of this cancer. That is evident. Gideon continued to twist and contort himself into any gymnast-like pose that may offer relief and nothing did. Finally, he fell asleep. He woke up a few moments later and began to throw up. Then he threw up some more. I could tell that this action made the pain even more intense since he couldn't even cry, but shake and moan. His eyes were sockets of electric suffering. I tried to mold myself around him to apply pressure anywhere I could. Finally, he passed out. I would not say "fall asleep" because that brings about the connotation of relaxation and a gentle and calm drift-off. No. This was the body just collapsing into a heap of exhausted and profound torment.

Now, Gideon is still asleep and I can't stop kissing that precious head of his that seems to have the most sinister of all villains making his home inside. I am praying with every kiss that the spot I am kissing can be free of this pain. Is it the cancer? Is it the chemo? No one knows. I guess I don't have to know, I'm supposed to give it up in prayer. I need your help there, please. My heart is about ready to explode for him. You mommies out there know what I'm talking about: those heart bursts. Your little one scrapes his knee: heart burst. He gets made fun of on the bus: heart burst. I feel like I am spontaneously combusting from the sheer quantity of these heart bursts.

...and another one is coming today. The most painful form of chemotherapy at its injection: The DOUBLE DEEP MUSCLE SHOT. Yes. Two humongous shots into his leg muscles at the same time. (more bursts.) Please pray that Gideon is able to handle this pain and it will be quick.

I need to post some sweet videos of him. If you don't know him, you will from these. And you will fall madly in love, I promise.

Friday, June 18, 2010

Glimpses of my Honey...




Every second of my day today was filled with self talk:
"Enjoy this smile!"
"He wants to walk around! QUICK! Get him out of bed before he changes his mind!"
"Savor those kisses."

Honestly, my Gideon, the Gideon before the cancer, has been trumping the chemically altered version of himself today. He woke up smiling and saying, "Wanna go for a walk, mommy?" Maybe it is just me, but his curls seemed extra buoyant and his eyes a brighter blue. He walked down one hall and got tired, but I'll take it! It breaks my heart the way he has learned how to make his arms stiff when I pick him up so that I don't brush up against his port. Then again, it is showing me that he can cope and is capable of making the best out of the most unpleasant situations. He wanted to get DRESSED today (no yellow scrubs)! Another happy moment. Except when the altered Gideon was beyond ticked that Brody had a Spiderman shirt on and HE didn't have his favorite superhero to don (Batman). The hospital saved the day by giving him Batman stickers to stick all over himself. Phew. Close one. The sweet Gideon returned soon after that breakdown.

(Here's my parenthesis where I admit that I escaped today with Cate. We ran away to Food Dance Cafe for lunch. I was in my sweats that didn't match, flip flops, and ZERO makeup. Cate went with me anyway. Bless her heart. It felt GOOD to laugh and joke with a kindred spirit... How can we not be soul sisters when her last name is "Wondergem"? Tangent: We need to have a Halloween party and dress up like 80's cartoon characters. Jem and the Holograms, The Misfits, The Smurfs, Heman...How fun is that? Hi. Have I already introduced you to the fact that my mind wanders? This is a TRUE sign that it was a good day.)

Back to the reason you are reading, and I'm writing:

Later in the afternoon, Gideon and I went on a hospital scavenger hunt and HE carried the clipboard in his wagon. As we found objects in the murals, he crossed them off his list (without my assistance). This moment of complete independence and accomplishment spurred on more smiles and giggles. He won a prize (A Lightning McQueen RACETRACK!) and he has proudly been displaying it to all nurses who enter our corner abode. That's right, y'all. We were transferred into the SUITE. It is not as decorated as our first room was...and honestly, I haven't had the drive to do it again. But, we have SPACE. This is so very important right now as Gideon has been cut off from using the Playroom since his sickness fighting capabilities have lowered even more.

All day long, Gideon talked about his "cheeks" hurting. We thought it was a sign of mouth sores (one of the side effects), but he was clear. When Gideon's dinner came, he about somersaulted with excitement -- he was famished! That was when I realized that it wasn't his cheeks hurting, but his jaw. The newest "hot spot" that Luke has decided to bombard is my precious one's jaw. Chewing is painful, so no matter how much he wanted to devour that pizza, it was just too tough. His little hands covered his jaw on both sides and he was forced to spit out the tougher pieces as it was beyond difficult for him. Morphine helped, and Gideon at least ate all of the cheese, pepperoni, and sauce! We take those victories to the podium for proper respects to be made, I tell you what! Those victories truly are blessings...

Thursday, June 17, 2010

Learning so much.

Judges 6:22-23

"When Gideon realized that it was the Lord’s messenger, he said, 'Oh no! Master, Lord! I have seen the Lord’s messenger face to face!' The Lord said to him, 'You are safe! Do not be afraid! You are not going to die!'"


(This piece of scripture can speak for itself... My words can't compare.)

How can one day feel like ten years? I started this day feeling transfered pain from my little one because I was so fixated on his own agony. It progressed to me imagining my hands were resuscitators as I placed them above his weak heart and we were wheeled into Intensive Care. Then, I handed my baby over to strangers in the operating room. Wait. I shouldn't say that. The fabulous Dr. Downing was our surgeon and I taught his son Austin when he was in seventh grade! That was a comfort. Still. I left him there.

The surgery went well and Gideon now has a port that was inserted for chemotherapy purposes. Don't feel bad if you don't know what that is. I had no clue until I got here and learned about it with my kids using "Porter" the doll. Basically, instead of poking Gideon a trillion times to give blood and to give him his chemo through an IV, this is under his skin and attached to a vein already. It makes drawing blood painless! No more pokes! (Well, for the IV type of chemo and blood draw, that is) Gideon has HAD it with being used as a pin cushion. Instead of wanting the nurses to fall madly in love with him, he gives them the stare down if they come in. He actually used these words, "I don't want another shot! I AM TIRED OF IT!" And I can't blame him! So, the port will alleviate that drama.

Sometimes ending one drama adds another, though. This boy comes out of surgery or any other sleep-induced procedure RAGING. He fights like a three hundred pound man. He hits. He kicks. He flails. He rips off cords, and even the PIN inside of his port! Apparently this is a side-effect for many people, and a nurse says it is usually the most docile who respond this way. All I can say is that I have never sang "Somewhere Over the Rainbow" so many times to calm this child down.

With this procedure, I can safely say that Gideon's honeymoon with the hospital is over. We have resorted to toys and mommy dancing and movies and food to keep that boy entertained.

The steroid he is on is making Gideon morph into someone unlike himself. Again, this almost always happens to all others. Still, I miss that sweet and gentle one. I can still feel him when we cuddle, though. And for the first time since the day began, Gideon SMILED. His first smile was directed at non-other than Derek Wheaton - my early elementary principal and a child whisperer. Derek's calm demeanor and personality radar got to my little guy. I am thankful for that! I just need to remember that while Gideon's meds will be determining his mood, I can choose my own mood each day. I will always choose to turn towards the sun, even if I have to scale a mountain to find it beyond the clouds of this disease. I guess what I'm saying without getting metaphorical is that I have OPTIONS whereas Gideon does not. The drugs are causing his moods.

We had other developments: Tom and I sat in the Chemo Clinic with our nurse, Michelle. She will be our nurse for the entirety of this disease. We LOVE her. She is fantastic! We hope and pray that Gideon's treatment will last the planned 3 year structure. We will need your help for a long time! Thank you for the support we have already been given. I feel your love and prayers. I have said that before, but I need to say it again! It is looking like we will be leaving the hospital this weekend if there are no other complications. We will administer a lot of the chemo at home, and we will also come back to the hospital when Gideon needs blood transfusions and in-house chemo needs (through the spine or through a shot in the muscle).

How do I feel about leaving so soon? Stressed out and afraid! What if I do something wrong? What if Gideon is exposed to a virus that makes him incredibly ill? What if I miss a warning sign? Really, I don't see HOW anyone can have a child with cancer and not be a believer. I can't do this without Him.

So, instead of focusing on the scary stuff, I will look towards the FUN! Brody and Gideon share a room. That can't happen anymore because of the whole germ factor. I thought this may be the case, but Michelle reiterated it. SO. Here it is: WE ARE REDECORATING! I am so excited. It will make this splitting of two best friends and brothers easier and exciting for them. Brody's room will be sports themed and Gideon's will make him feel like he is a pilot for sure. These rooms will be their safe spots to be their own selves. Gideon won't be a chemo patient, he'll be the boy who loves planes. Brody won't be the kid whose brother is sick, but the lover of sports that he is. I want them to feel like they are on a vacation in their own space. I know we should save for other purposes right now, but I know I can do this on a creative budget. If anyone is selling boy furniture, let me know, okay? One of the rooms has my flowery girl furniture from my growing up years. I won't have time to garage sale, but if you are selling something, please let me know. I just want to bring home new happiness, and not just new struggles.

Help

I only have a few minutes before I am bombarded with doctors. Gideon returned to his sweet self and tried to sneak a "late night" of being up (full of giggles and stories). At around 1 a.m., he woke up suddenly screaming "OW! OW! OWIE!" at the top of his lungs and grabbing his head. I was more helpless than the last time he was in pain. He was hitting his head and screaming inconsolably. He was given morphine, but it didn't seem to be working. I was rubbing his head (he kept pushing my hands where it hurt) and applying wet cloths, but nothing was working. I called Craig Thornton to go to our house and have Tom come in (thank you, Craig). I was so afraid. That is an understatement.

My eyes looked up and I saw Pastor Mark's phone number on the whiteboard. Even though it was past 2 in the morning, I frantically called. I asked him to pray that Gideon's pain would subside. There is nothing more helpless than not being able to take away your baby's pain. I couldn't hear Pastor Mark, but he was praying. I hung up, and I promise on all that I love and hold dear, Gideon instantly fell asleep. Power of prayer in a moment when I had no control. Thank you, God.

Later, when he was checked, this is what we found out: The headache (not sure what caused the headache) triggered a very irregular heartbeat. His heart rate is also very slow. We have had blood work and an EKG, and are waiting for more answers. We were supposed to get in for pre-op to get his port in this morning. I don't feel like that is the best idea, but I'm not a doctor.

Right now: PLEASE PRAY THAT GIDEON'S HEARTBEAT AND RATE RETURN TO NORMAL!! This monitor that is hooked up to my baby is a helpful device, but more frightening than any monster I could ever dream up. We need you right now. Please spread the word.

Wednesday, June 16, 2010

Woah. Day one of chemo...

My brain and my eyelids are at war.

"CLOSE!"
"NO!"
(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 one...no 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!!*****

Tuesday, June 15, 2010

Some pictures from the inside...


























What a DAY!

First and foremost: GIDEON HAS BEEN DIAGNOSED WITH THE MOST COMMON OF ALL LEUKEMIA: B-Precursor ALL! Prayers have been answered, but the battle is just beginning. Gideon will have a blood transfusion in the morning, his first dosage of spinal chemotherapy, and another dosage of chemo through a new IV (unless there is a miracle and we are able to get his port early tomorrow...since it is obvious that all of you aid in the miracle prayer chain, there is no harm in praying for that one...). So, here it comes! We were reminded that his health will actually get worse through this vigorous initial stage, but we will pray that infection and other side-effects stay at bay. If there can be a "perfect" cancer treatment, we are praying for that one! We actually cheered and cried when this was all announced.

A List of today's miracles:
- We celebrated Brody's birthday...5 years on this planet!
- My sister AIMEE came today. There is nothing stronger than a sister bond, and that girl can read my heart just by looking into my eyes. Words are hardly ever needed. I am so thankful for her.
- Brody got to hang out with a police officer and check out the squad car (and handcuffs)
- As you all know, Brody is a sports fanatic, especially WMU hockey! I can't even count how many WMU games he has gone to and was transfixed by, but today made me decide that we will never miss a game -- never. A whole CREW of WMU hockey players came to Brody's birthday party and STAYED. They ate with him here in the hospital and watched him blow out his candles. Talk about tears when I saw all of the one-on-one attention this boy with a broken heart received. Wow.
- We got the news about the ALL during Brody's small get-together -- so all were able to witness the excitement.
- Gideon took his oral morphine and wore his face mask to the party ONLY because there were hockey players out in the hall ready to head to the party room.
- ANDY JENKINS and family came to the party and shared the fact that we are only days away from his NO MO CHEMO Party! The Jenkins Family is pretty much our own flesh and blood at this point. The help, support, talks, and the amazing promise that is Andy has made our hearts and souls so very hopeful!
- Oma and Opa Westerbeek made SIGNS to hold up in the parking lot for Brody and Gideon since they have been exposed to the flu bug. They drove many miles for this, and it was so beautiful watching Brody and Gideon's faces over their own personalized posters.
- Gideon's spiked fever after the party went down significantly after just an hour...all on its own.
- There is water in my cup right now. With ice.
- Gideon is sleeping.
- This cookie I am eating right now actually TASTES good. Mmmmm...
- God is GOOD!

Now... SOME PICTURES! (Next post...It is taking FOREVER to load.)

Happy Birthday, Brody!

Brody's Big Day

Against my will, I was forced to leave to go home and shower and sleep last night... Apparently, I was getting smelly. I didn't notice. All of you visitors who hugged me anyway, you are a bunch of saints. Hopefully my BO came out in the wash...

I am so thankful Brody was with me for this trek. He asked if we could get a new swimsuit for his WATERPARK birthday on Wednesday (even though his bday is today, he has a couple of friends he'll celebrate with tomorrow), so we stopped off at Old Navy to pick one up. It is so strange to be in the land of Non-Hospital. There are people still going to work, still spending money, still getting mad at traffic lights... It was boggling to me. The Old Navy moment was a new one. They have a projected interactive game on the ground in the children's section. The last time we were there, Brody and Gideon were kicking at a computer generated soccer ball and gettin' down and dirty with their virtual grass stains. This was when things seemed so normal. We could just get in the car and go to Old Navy. We could drive a little further down the road to the park and I wasn't nervous about bruises or germs. So, when I saw Brody playing that soccer game alone, a thunder bolt of grief shot down my throat and pinned my lungs down with anchors -- incredibly heavy anchors -- and all I could do was exhale and exhale some more. It felt like I was underwater. This happened about ten more times once we were home. I saw Gideon's blocks we never got around to putting away = anchor. Gideon's sippy cup still on the table = anchor. Brody saved me because I could have easily succumbed to the weight of those anchors and let them pull me down into a dark, dark place of grief. He wanted to make a poster for Gideon, and then came some talks I have been hoping for...

Brody has not handled this well, as you all know. I don't believe there is a "good" way to handle this, but he is taking it so very hard. He won't talk about it and tunes people out when they try. So, we made a humongous "GET BETTER, GIDEON!" sign in bubble letters. It was Brody's job to fill in the bubble letters with his creative designs. I am thankful it was such a huge poster, because our conversation naturally brought up Gideon. Brody said, "Even though it's my birthday, I won't get what I want because Gideon is sick." I asked what he wanted, thinking he would bring up some huge and superficial type thing (I don't know why, I was just assuming he would be like all other 4-5 year olds). He said, "I want to ride the play firetruck in the kid's playroom at the hospital, but Gideon always wants to ride it. I let him. He's sick. I'm not. So, I probably won't ride it, even though it has sirens." So. There it was... an IN.

I told him we would make SURE he got a ride. Then I asked, "Tell me what you think about this whole hospital thing."

He answered, "It drives me crazy how people keep asking me if I know what is going on. I know! Gideon has bad blood. We need to get him good blood. That takes a long time. But, I feel mad when they tell me and I have to remember it all again!" (makes PERFECT sense to me...)

Then came the moment I will treasure. Brody put down his crayon and said, "Mom? Doesn't it freak you out?" (Those were his exact words...)

"About what, Brody?"

"Doesn't it freak you out that Gideon always wants you so much? That you always have to smile and get him to do all that stuff?" (By "stuff" I think he meant the blood draws, the peeing in a cup, etc...) The boy is seeing how this is affecting not only him, but me. I feel like he is an old soul, that one. So introspective and wise... aware of all that is around him. Poor sugar. This is a time I wish he was more oblivious and space-cadet-ish like his mommy was at that age. (No jokes about the fact that I still have space cadet tendencies, okay?)

Brody and I continued our heart-to-heart and I am confident that he is feeling secure in my love. That Gideon's sickness does not trump the fact that I adore him through-and-through. He's my baby, too. Even when he's 80, he's still my baby! I told him that, and he thought I was crazy. There. Precious normalcy. He always thinks I'm crazy :).

So now it's his birthday, and Brody made me dress up in a skirt to take him on a breakfast date. He chose iHop. Even though I went brain-dead at the register and had to ask the receptionist to figure out how to add my tip to the total, the date was BEAUTIFUL! Brody was smiling and making jokes and asking me to draw dogs on his placemat so that he could draw piles of poop underneath each dog. Yup. Normal stuff like that. What wasn't normal was the fact that I walked away from my Calculus-like bill at the counter without worrying that the receptionist thought I was on some heavy drugs. Not worried at all.

Brody is out with daddy now. He is kicking some soccer ball somewhere, I'm sure. I am watching precious Gideon sleeping. Here's where I'll give the Gideon update. All you doctor and nurse friends will think I'm very simplistic in my explanations of what is happening to him right now, but really...the doctor lingo does not impress me. I'm not in this to be all look-at-my-lingo-y'all-see-how-smart-I-am. No. I will be as simple as I can. This process is complicated enough. Basically, Gideon's capability to be immune to infections has been drastically lowered. He has had a fever, so the doctors put him on an antibiotic. He is also in a lot of pain. He is on morphine now. Gideon's energy level is very low, but even though he is in his bed, he is smiling and playing quietly with his trucks, cars, and planes. I am getting flustered with ALL OF THESE BLOOD TESTS. Honestly, he hardly has any blood left and we keep removing more? It seems so counterproductive at times. Next they are going to get out a jug of leeches ala 1654, I bet. Oh. There I go getting all negative. Taking a thankful breath NOW that I see his little chest rise and fall.

HERE IS THE BIGGEST NEWS OF ALL:

We will find out if his Leukemia is ALL or AML this evening! We won't know the subtype and treatment for another couple of days, but we'll know the main gist. PRAY, PRAY, PRAY for ALL. The more favorable one to treatment.

I love you all. My next post will be more picture-oriented. I can get wordy on this here blog. Hopefully I am not leaving anyone with a headache the way I left everyone who visited the last couple of days with my smell.

Monday, June 14, 2010

The Bone Marrow Extraction = Success!

I feel like this may be a P.S. to my early morning blog, but so many things happen that I feel MUST be shared. As you know, Gideon told me about the "fishies" that were hurting him. After I posted my blog, his new nurse came in. Gideon said, "Look, mommy! Nice fishies!" The nurse had scrubs on with happy fish all over them and heart bubbles. As if that wasn't enough of a connection, we went into the "garage" to get more blood-work done before the sedation, and Gideon's IV worked beautifully (no additional pokes needed). When they cleaned out the IV line before reconnecting, they flushed it full of something to clean it out. Gideon asked if those were the good fishies to take away the bad fishies.

We were ushered into the Sedation Room and Bone Marrow extraction room, and I told Dr. Lobel (Gideon's main man) about the angel, the sharks, the bad fishies, the good fishies...all of it. It was such a comfort to my soul. He looked at me with tears in his eyes and said, "Do you want to see the acronym for one of the tests?" He lowered his clipboard and pointed. There in black and white was the word "FISH." Is there any doubt that we are not surrounded by God? None. This moment made me feel a surge of strength and as medication after medication was zapped into Gideon's IV and he began to drift off, I knew everything would be okay.

...and it was! They needed to get two samples in order to have enough, but at least he won't have to go under for this procedure again. As Gideon began waking up, the first thing out of his mouth was a song. No "Hi, Mommy." He fluttered his eyelids and in full voice began to sing, "Somewhere...over the rainbow! Way up high!" (This is one of our nigh-night songs that I have forced Gideon to sing for me as my ability to sing them has not been very strong). Talk about sweetness.

Gideon is napping now after a long day of visiting and an EKG (when he was hooked up to all the wires he said in his best robotic voice, "I. Am. A. Robot!"

THANK YOU for the prayers, everyone. Please know that we FEEL them. We can tangibly FEEL them working.

Brody and I had a chance to go play outside and take a walk. He made a couple of wishes at the wishing well... He didn't see my tears as he wished, only smiles. He wished his daddy could get a motorcycle and then he wished Gideon would be all better. He whispered them, but I heard. I'm sure he was heard by Someone else, as well. Brody's birthday is tomorrow and his birthday party with a few friends is Wednesday. We are trying to make it as SPECIAL as we can. He is really, really struggling. He may be taking this present situation the worst out of all of us. Please think of him on his special day. We adore him, as well. I want him to FEEL that the way I FEEL your prayers.

"Mommy! Move over, please. Make room for the angel!"

Last night as Gideon and I were snuggled up in his bed, Gideon said, "Mommy! Move over, please. Make room for the angel!" Tom and I tell Gideon about God and Jesus, but we don't talk about angels. This has a back story that only Tom and I know about -- now all of you will know: A few weeks ago, Gideon yelled for me from his room at the top of his voice. When I got there, his face was alight and plastered with the biggest and brightest smile. He looked at me with an unearthly love and said, "Mommy, there's an angel in my bed. See her? She is beautiful!" and then rolled over and went to sleep. As a mom, I won't lie: this freaked me out. I think I sat next to his bed for a long time after that...watching him breathe. Tom came in wondering where I was, and I told him. We both looked at one another in amazement, and fear. All we could say was "Wow." It felt like the heaviest and most fragile moment, and if we talked about it too much, it might fall and break.

Gideon never brought up his angel again, until last night. After I swallowed the lump, I asked him to tell me about his angel. He said, "It's a girl. She fights sharks." Maybe the blood being made in his bones feel like that -- like sharks. I would like to think that his angel knows his pain. That she knows how to talk to him. God is so with this boy. I am so thankful he is comforted by someone not of this world, but of heaven.
-----------------------------------------
THIS MORNING:

Please be praying HARD at 8:45 a.m. when Gideon has his bone marrow extracted. He will be sedated and I have no idea how long this will take, but I was told this: Once the extraction is complete, it will be sent to Mayo and we won't have answers for another 48 hours. Honest truth: This makes me feel so much ANGER. I know it is no one's fault. I know we are being taken care of beautifully, but really. This waiting is making me get more and more ragged and unlike a human. More like a spaced out alien who sees out of my eyes and feels, but is kind of hovering above everything. It makes me feel like I have to disconnect with my mind and heart in order to go from one moment to the next. I will pray, pray, pray and hope for that A.L.L...and the best form of A.L.L... Is there a best sub-category? Usually I am Little Miss Research, but I have not Googled ONCE. I have not read ANY of the information and facts. I am holding out for God (with the assistance of that angel) to perform a miracle.

As I typed this, Gideon woke up and said, "Mommy, there are scary fishies in me. They hurt." I guess that answers the shark scenario above. Woah. Thanks, God. I was typing with anger and then that little wake-me-up. Yes, angel. You have my full permission to FIGHT THOSE SHARKS!

(This all may seem so made-up, but I promise each and every single one of you that this is the truth...on all that I hold dear and love. I just witnessed heaven on earth on this hospital bed and I will savor this moment forever.)

Sunday, June 13, 2010

video
Gideon began his dosage of Allopurinol this morning. This helps block uric acid which is at a super high level right now. Uric acid is the byproduct of blood cells breaking down. Basically, it will prevent his kidneys from failing. THANKFUL to be in a hospital!!

When Gideon and Brody saw one another this morning, you would have thought they've been separated for YEARS. There were hugs and kisses and giggles. Brody is Gideon's IV Tree Protector.

The Beginning of the Battle...

My heart is bursting with so many emotions. I am choosing to focus on the most positive one right now, and that is the unmistakeable presence of God. We are overwhelmed by the outpour of love and prayers and phone calls. I know that it is your prayers that is helping my heart stay aloft through this. This blog will be my way of communicating with all of you: friends, family, and even strangers who want to be a part of Gideon's battle with Leukemia. Thank you, thank you, thank you for being willing to walk with us through it all. I'm in the camp that believes there can NEVER be too much support and love. You will never bother me with questions, and YES, I will ask for help!

A little about Gideon...
Gideon James Schripsema turned three on March 27. Since the day he was born, light has poured from him. He has an uncanny sense of empathy that makes everyone (even the hardest of souls) smile. Gideon wants to please, please, please and brings peace to any situation. Blessings are pointed out by him on a consistent basis ("Look, mom! That flower is opening. You love flowers!"). You will witness firsthand the sweet musings of this unique little mind. Gideon LOVES the Airzoo and has told me he will be a pilot someday. He loves to sing, and as he was getting his blood drawn yesterday he was sure to explain his love for airplanes, outer-space, and race cars ("with numbers on the sides"). He is in awe by every little thing. His enthusiasm over his hospital bed makes me just want to inhale him...

How this came to be...
On Wednesday night, I could hear Gideon calling for me from his room. When I got there, he was in tears. "Mommy, my leg hurts!" was what he said. I assumed he was having growing pains, so I gave him some Tylenol and I rubbed his leg until he was asleep again. The next morning, he was still favoring his other leg.

This happened again on Thursday night, and this time I slept with him so that every time he winced, I rubbed his leg or just applied pressure. This seemed to help him. In all other respects, he was the same cheerful boy.

By Friday, my last teaching day, he had a low-grade fever along with the pain. I called his Pediatrician and was told to call in the morning to make a Saturday walk-in appointment. Again, I slept with Gideon and rubbed him whenever he began to whimper. I was sure it was a crazy virus that I read about online...

Saturday: The most difficult day of my life...
We got in to see the doctor by 9:30 a.m. Dr. Sommers said she believed it was a virus. His knee (where most of the pain was located) was not swollen, inflamed, or hot to the touch. She did say that she wanted me to get to the hospital to do some blood work to rule out all other possibilities. This did not alarm me as I believed in my heart of hearts that it was protocol to be extra safe. I am a fan of being extra safe (especially with my baby boys).

Gideon and I went to the hospital. I explained to him that he was going to get a shot to make sure he was healthy. I was holding the lab sheet and him in my arms, so the lab sheet got all crumbled up. Gideon handed it to the receptionist and said, "Sorry it's messy. Mommy had her arms full of ME." (followed by his trademark toothy grin while pointing at himself with two huge enthusiastic thumbs). The receptionist smiled, of course, and Gideon told her he was okay with getting a shot. He will talk to everyone and anyone, that boy...

When we were called to the back, we walked in and Gideon said, "Hi! I'm Gideon. Please give me a shot and make my leg better, okay?" Melt. Everything that boy says makes me melt. I was sure that I would have to pin him down to get the blood drawn. Not at all. Gideon talked and talked and talked through the whole thing. He said, "My brother Brody doesn't cry when he gets shots. I won't, either. I'm brave like him." When he was told to get a prize for being so wonderful, he asked, "Can I have one for Brody, too?" I have never seen that boy so excited as when he was strapped into his carseat and ready to give Brody his silver airplane he picked out. "Brody will LOVE this, won't he mommy?" He kept asking. He didn't stop smiling and zooming his planes in circles the entire ride.

An hour and a half after the blood was drawn, we got a call from our Pediatrician. Since all of our cell phones ring when our home phone rings, Tom was the one who answered (he was at a birthday party with Brody). Tom called me and said, "Pack a bag and head to Bronson Children's Hospital. There are abnormalities in Gideon's blood, but it could still just be a virus." If a heart can't travel through the body and shatter to the ground, I'm pretty sure my soul did at that moment. Tears were instantaneous, and Gideon immediately started asking me what was wrong and kissing my face ("There. You're better, mommy."). I realized I had to pull it together for him, so I started "sneezing" and making jokes about the "DUST in this house" (which is true, if I'm being honest). I told him we were going on an adventure together. That we were going to take a trip to the hospital where there are beautiful paintings on the wall, a bed that moves, a TV HE can work, and a room full of toys. He made his shocked/ecstatic face, jumped up and down and yelled, "WOOOOOOOOOW! YAY!"

One (or possibly two) hour(s) into the stay, Dr. Sommers came in and said, "I'm so sorry. It is Leukemia." I am ashamed by how I responded. I honestly believed this would not be the news we would hear. Right in front of my Brody and my Gideon, I fell to the ground in a hysterical heap. I couldn't hear or see anything.... I never felt a total deadening of my senses, but I was told this was shock. I think I'm still in shock. I wish I would have been able to have the silent kind of shock. The silent head nod you see in the movies, but alas-- this Amanda is not so silent when it comes to emotions...
Facts...
* Gideon's anemic from the Leukemia, but does not need a transfusion at this time.

* His liver and spleen are NOT enlarged

* His lymph nodes are enlarged, but he has NO infections or bleeding

* Gideon shows no signs of it being in the Central Nervous System

* He had a chest xray done (which he "smiled" for like he was getting his picture done professionally... so much GUSTO!) and it is clear of fluid

* He doesn't have any "rare conditions" coupled with the Leukemia

* Gideon is constantly being flushed out with his IV (also didn't cry when that one was put in... In fact, the nurse said to stare at mommy while it was done and the honey said, "Isn't my mommy pretty?" Seriously. I can't ever be down with this endorphin-kicker-of-a-boy).

* We will have his spinal tap done on Monday and his bone marrow extraction. We will know after these tests if Gideon's diagnosis is Acute Lymphoblastic Leukemia (ALL) or Acute Myelogenous Leukemia (AML). ALL is more favorable and easier to treat, so we are praying for that one.

* We will be here at Bronson Children's Hospital for at least three weeks.

* We will know the plan of action on Monday, and Gideon will be fixed up with a "Central Line" or a port in his chest for the Chemotherapy soon after.

* I am so thankful I didn't name Gideon "Luke," since that will be what I call this Leukemia guy who was NOT invited into our house, but we will work him OUT. No matter what, this cancer is HIGHLY treatable. It'll be a long battle, and I may not always sound like myself, but we will keep our eyes fixed to the heavens. It was NOT by accident that I changed my mind and gave Gideon his name. He is our mighty warrior with optimism and an unending happy spirit that he will use as his weapons...

Please pray for our boy, Gideon. Also, PLEASE pray for his big brother, Brody. Brody was beside himself when he had to leave last night. He had his first full-on temper tantrum... He screamed at us, "NO! I. WILL. NOT. LEAVE. MY. BROTHER! HE IS MY BEST FRIEND!" and then held on to the bed with a strength I didn't think was possible in a four (soon to be five) year old. He wouldn't stop crying and screaming. Before he was whisked away by daddy, he whispered, "I'm scared." Please help us to make his birthday on TUESDAY (June 15) a special one. This boy was blinking back tears all day yesterday...