Cancer-FREE

Cancer-FREE

Saturday, October 30, 2010

To My Teen Friends...

Dear Teens,

Here's the deal: YOU have a purpose. Life for you right now is only illuminated as far as the headlights of a car, but somewhere down the road is your destiny, and it's gonna be good. You can't see it right now, your entire life is only shining in those two little circles on the road of "RIGHT NOW," and it seems like that's all there is, but there's MORE. SO much more. Once your destiny is in focus, the blinders of darkness around those headlights will be lifted. It's going to be amazing when that happens, because you will be able to see all of the gorgeousness that is life all around you.

Here's another deal: We are all strange. If we weren't, we would be robotic and boring. But we have quirks. The insane part is that the bullies who put you down have secrets about how abnormal they are too, and by throwing insults, they somehow feel like that makes them more normal. Don't give them the power to take away who you are, or diminish the unique qualities this world is so thirsty for. Someday what makes you feel awkward and out-of-the-loop will be what makes you so irresistible as a human. You will embrace these differences and own them and wear them proudly. Right now you may feel like you just need to hide them in order to survive, but that glow that is a part of you will burst into light someday. It will be a spectacular day when you feel like you can walk, talk, and act like YOURSELF (for me this happened in college...).

Yet another deal: People will break your heart. They will. They are humans, and so are you. You may take the heartbreak so personally that it crumbles the goodness you once thought you had inside, but put a halt to that right away. You might question your value, but please don't. There are countless cliches out there to explain the fact that is true: There IS someone better out there for you. Again, don't let those headlights tell you otherwise. Please. You have no clue the stunning person who is breathing the same air you are and waiting...waiting further down the road for YOU and YOU alone.

The biggest deal: You are loved beyond measure. If you were diagnosed with a disease, I promise a family member WOULD blog about you. They might blog so much about you that you get embarrassed about it. Hopefully they won't describe your poop the way I do about my son. But really and truly, you are someone's heartbeat. You may be so stuck in a dark place that it feels no one could love you, but here is what you HAVE to do: ask for validation. You must put down your pride and ASK someone you have an inkling might care about you why you are so important, so valuable. If you are stuck in an even darker place than that: realize you are not alone. It's lonely in the dark and it feels like every other person is basking in the light. There is an even bigger entity that hears you and loves you beyond all measure. Even if you don't completely believe, pray. There will be a peace, I promise. It is uncanny and it is spellbinding, and I promise it happens. Whatever walk of faith you are on, here's another truth: You have to find what you believe on your own. You have to own it because YOU believe it. If you seek, it WILL be found.

This message I am writing to you, my teenaged friends, has been on my heart since Wednesday when I heard about another teen suicide, this one very close to home. It grieved me immeasurably. I was not his teacher in seventh grade, but I taught many of his friends who loved him. I think about you all of the time, my former students. I never said this in class, but every single day I taught you, I looked at you all and thought, "These are someone's greatest gift and they have entrusted ME to lead and teach and direct them for an hour today. How will I let this hour pass?" And so I taught my classes thinking about my own babies in someone else's class someday. I loved my academic subject (I think that was obvious), but I loved YOU more.

I don't know how many of you will read this, or even if any of you will. I will let it be in the cyberspace world, circling around until it is needed. I hope that anyone who does read this remembers that no matter how horrible, scary, ugly, and heartbreaking the situation, "IT WILL GET BETTER!"

Love one another. Never forget those who have gone and treasure those memories. You are someone's Brody or Gideon... I think that's what gets me every time...

All my love,
Mrs. S

Wednesday, October 27, 2010

CLEAR poop?! WHA....?

(Warning: You saw the title... You may not want to continue reading if you are easily offended by feces...)

Yes, I remember this feeling. This is the feeling of walking around in a daze with my mouth hanging open. I am jolted fully awake only when a string of spittle trickles down my chin. Call it water in the face, I don't know. Really, though. Some very consequential and incredibly needed brain cells have abandoned ship, and it takes me far too long to register any factoid or come up with any type of retort. Now is the time to win an argument against me. Go ahead, ATTACK! I'll just wipe my face with my saliva-soaked sleeve and stare blankly at you. There may not be any feeling of satisfaction from that. Sorry.

I am back to being a short chef for Gideon at night. Last night there were about five separate meal portions of corn and a few rogue slices of cheese tossed in the mix. I haven't had to fire up the burners just yet. I have had to deal with Gideon's diarrhea dilemma (GREAT name for a band: Diarrhea Dilemma...just saying...) starting last night, or I guess that was technically early this morning. I didn't really STUDY it once he dumped, and so I had no idea what it entailed. I do remember hearing a lot of splish-splashing, but I really didn't see anything in the toilet. You know I looked. I explained that habit in an earlier blog. It's what good mothers DO. I blamed the toilet color for my inability to see, since it is black. Crazy things get camouflaged in there. Don't worry, this is going somewhere. There will be a point. This is not just Mouth-Breather Manda talking. Ugh. That was a gross image to mix in with the idea of diarrhea. Sorry. I promise my mouth was closed while the pooping commenced. It was just to make fun of myself and lack of brain storage/usage. On with the show... (I am trying to force myself to be focused, really.)

Throughout the day Gideon had his bursts of steroid energy. So much so that Brody seriously asked me, "Mommy, can't you just put him in a cage?" And he meant it. After these explosions (another funny word choice) of testosterone, Gideon would all-of-a-sudden get lethargic and lay on the ground. He also didn't want to eat. He requested a million different things. I made every single one of them. He would take a sample bite of each meal, and then push it away with an "I don't want that." Frustrating. But, I kept on keeping on. Steak? On it. NO? Okay...grilled cheese. NO? Okay...pretzels. NO? Okay...and on it went. And on and on... He probably ate one half bite of everything and ended up spitting out each mouthful. What was this? Some sort of mutant DIVA steroid monster? Ugh. Next he was probably going to ask for M&Ms, but only the GREEN ones with room temperature Bling H2O (that's REAL bottled water, by the way...and it is forty dollars per bottle) surrounded by a bouquet of blue roses. I'm not the biggest fan of high maintenance. I like to laugh at it from afar, and dealing with it in my son was disconcerting.

So it went. Then Gideon ran up to me in the kitchen with sheer panic laser-beaming out of his eyes. "MOMMY!" and on the "Y" of "Mommy," there was a massive eruption down below. A wet-sounding enormous eruption. He started to cry and said, "I couldn't STOP it." Instantly his Mariah behaviors towards food evaporated and I felt immediately sorry for my honey. Thankfully, since there was a detonation like this the night before, I had him in a pull-up. Once I took off the pull-up, I had to look again. And again. And, one more time to make sure this wasn't just one of those slow processing moments and soon color would be restored to my tired eyes. No, it was real. Gideon's poop explosion was totally and completely CLEAR. Not one brown speck or kernel of corn to be seen. What?! Never had I seen anything like it.

We had to bring Brody to school. It was PUMPKIN CARVING WITH DAD today, and he was bouncing around with unbridled giddiness all morning. I called the clinic and explained the situation: No fever, but clear poop. When I got back home from the drop off, there was a message to go straight to the clinic. Gideon and I didn't get home until dinner time. He was given fluids and then some sustenance via IV. He also got to "poop in a hat" which Gideon thought was hilarious. Somewhere in Bronson someone is doing a poop biopsy of my little guy's excrement. What a job. Has Mike Rowe tackled that one yet? Focus. Okay.

We are thinking it was probably a stomach bug, and I am to monitor Gideon's temperature. As long as he stays hydrated (the Diva LIKES Pedialyte...thank goodness), we should ride this one out. Thankfully, his numbers are high enough to battle this bug. Please pray it works out of his system soon.

I better get to bed. Soon I will be asked to lay out the spread. GOODNIGHT!

Tuesday, October 26, 2010

Dory



"DORY CANNOT COME OVER!" That's what Gideon screamed at me from his medicine chair tonight. That scowl he wears makes me stare at him even harder, I want to memorize that little piece of stubbornness. His brow gets all puckered up and his lids make a menacing fold over his eyes. He even sticks out his lips in a HMPH! formation. If there is anyone who is as close to a cartoon as a human can get, it's Gideon when he is angry. I actually think it's adorable.

"What are you talking about, Gideon?" I asked while mixing up the meds at the counter.

"Dory is NOT allowed to jump in the water!" He yelled back. He screamed so loud that his voice cracked.

I was still stumped. I knew that Dory is from "Finding Nemo," but I had no clue what he was talking about. None. This is not new these days, he is STEROID BOY once again. His appetite is huge, his digestive system is insanely strange, and he has all of this GRRRR in him. He grinds his teeth constantly and head-butts me without realizing what he did. We have a blow-up football player guy who is supposed to "catch" the football, but instead we have let this animal cut lose on the toy. He kicks him. He strangles him; he drops the elbow on him... He needs a football team, I think. He has so much pent-up angst that he could make things happen on the field, no doubt.

I also found that Gideon talks without realizing he's talking. It's like he has a steady rant of inner-dialogue and then bits and pieces are said aloud without him realizing it. I thought that this was what was going on with this Dory situation... Whenever I try to make sense of these conversations that were not meant to be heard by me, he gets frustrated. Still, he was focusing his anger over Dory to me. I could tell he wanted me to understand.

"WHAT water, Gideon?" I asked.

He growled. It was actually pretty intimidating. See what I mean about getting him in on a football game? "MOMMY! My blood water! NO DORIES ALLOWED!"

Then a light went on. His least favorite of all of the chemo is blue! Blue, BLUE, BLUE! I held up the syringe on his medicine buffet platter and asked, "Is this Dory?"

"YES! I don't like her! She should swim away down the SINK!" and he HMPHED! and crossed his arms in a that-is-that maneuver. Yes, his name WILL be on an Oscar... I told you.

I hope this came across as delightful as it actually was. It is sometimes grueling to live with this amped up boy, but there are these moments. OH! Precious one. We then talked about how Marlin needed Dory to help him. I told him the Nemo Chemo could use some reinforcements in their battle to defeat the sharks. I don't think I used the word "reinforcements," but I explained it in 3-year-old flavor. You know what I mean. He kinda of half-cried, "Okay," and then swallowed Dory without too much more trouble. He wants a happy ending, too!

Gideon has been eating it all, but it has to be what HE orders. He actually asked me for a bowl of BROCCOLI today. He has always hated broccoli. He ate it all up like it was candy. WOW. I was impressed with that craving. Mostly it's MEAT. SPICY meat. Then he goes all vegetable-lover on me and it made this mama's DAY. Well, that and the Dory bit. The things he comes up with all on his own... The imagination never fades.

Monday, October 25, 2010

Flight Suit!!





Kelly Jensenius strikes AGAIN! First she gives my boys a world of solace that is their bedrooms, and now this. As you can see above, Gideon got his very own FLIGHT SUIT from Kelly. It is real... Gideon has said that over and over and over, "I have a REAL flight suit. It's REAL. And I will WEAR it. And I will FLY in it! When I'm big, I will!" That did it... the "When I'm big..." Talk about taking me out of my rut of stomach-churning heartache. When he said those three words, his whole "I won't be an old man" comment lost so much of its sting. The suit itself is truly incredible. It will have a place of honor hanging in Gideon's airplane room. Seeing Gideon's eyes dance with dreams of the future makes it invaluable. THANK YOU, Kelly! Gideon's full name looking all official on that uniform has my daydreams of the future tap dancing in my head, as well: GIDEON SCHRIPSEMA on sports jerseys, High Honors Certificates, a Grammy, an Oscar, all of it... So, with the flight suit came dreaming. I always will happily welcome that.

It was a difficult weekend, but once again the staff of KCMS Pediatrics Hematology/Oncology brightened up my perspective. I always wonder if I'm doing an okay job, if I could do better. It's the achiever in me. I judge myself harshly, and so there are many times when I feel like I don't handle all of this very well. Sure, there were the irrational monsters who tried to get the best of me, but there are also times when I think to myself, AMANDA! That was not the best way to handle that! You messed up! Thankfully, I can own my mess-ups and learn from them. I needed a good-ole fashioned "ATTA, girl!" The clinic nurses and Dr. Lobel did just that. They really made me feel like we can do this...Like Gideon is doing so very well and we are going to keep plugging away day-to-day until the battle is won. It feels achievable, once again. Hope is restored! I left there today with my spirits raised and with a happy (but hungry) little man fighting his sharks while pulling his chemo suitcase...singing.

Today Gideon received more NEMO CHEMO, and he waved happily and talked to his chemo tube as he was being infused. It was like a little pep-talk, and I just melted when I heard him say, "Hi, mommy and daddy and baby Nemos! GET THOSE SHARKS! You can do it!" (The "You can do it" was said in a Rob Schneider voice. Gideon does the voice better than me, and he has never actually seen Rob Schneider... He has a future in impersonation. YAY! Something else that will have his name on it. An impersonation trophy. I'm sure they are out there. There I go! Tangent. I'll end it with a parenthesis and get back on topic. Ready? Here we go.) Gideon also had Vincristine. He acted like his own sweet self today, only amped up. He had so much energy, and his numbers are looking gorgeous! He didn't need a transfusion today, but it's looking like he may need plasma by Thursday.

Gideon was feeling so fabulous, that he played pretty hard outside. He forgot he had chemo, I think. Then he barfed. A lot. Zofran to the rescue! We will be relying on that stuff like it is oxygen (just won't use it as much as oxygen...that wouldn't be the best idea).

All-in-all, Clinic today was a success! And we ended the day with dreams of flying. What can be better?

Saturday, October 23, 2010

Irrational...

I know most of what I'm about to say is irrational and illogical and not based on truth. My brain is fully aware of all of this. Still, these thoughts creep into my head now and then like little Ninja-daggers. Out of the blue one of these notions attack, and they always leave me breathless and my heart bleeding, to be honest. I think I'm mostly posting these thoughts not to get a whole slew of Oh-Amanda!-You-KNOW-that-is-not-true comments, but to just be open about all of the emotions and thoughts that swirl in this crazy noggin. I won't share all of the thoughts. I don't want to be committed somewhere just yet.

Gideon scared me tonight. More like terrified me. He said, "My heart will stop and I will live in heaven." PANIC! ALARM! Dropped the dish towel. Yes, this comment is true. Someday, yes. I made sure to cut in with a "When you are an old man, yes!" This made me feel better, but then that boy responded, "NO! Not an old man. I won't be an old man!" I found myself arguing with my three-year-old with more gusto and emotion than I ever have before. It was hard to tell who the three year old truly was. "YES. YOU. WILL!" I said firmly and with a set mouth over and over again. Does it make sense to argue about this with a tiny one? No. He kind of gave up the argument by saying, "I will live in a sandcastle in heaven." I did not like this talk at all (although the sandcastle image is a pretty one, and had I not been so upset I would have asked more questions about that sandcastle). I should have embraced the conversation, but I still didn't want to. I didn't want to face any of those ideas. I did not want to entertain the thought. Not at all. Instead of looking into this majestic sandcastle, I chose to bury my head in the sand.

When I tucked Gideon in, I will admit to something embarrassing. This was pretty selfish of me, and it was totally and completely to ease my unease. I said, "Gideon, you will go to heaven someday. But please promise me you will try to stay on earth as long as you can."

He answered with a solemn, "I promise."

Then, here's the irrational selfish part, I said, "Promise me you will get old and let mommy go to heaven before you do."

He again answered, "I promise."

Okay. I know. We are humans. We are not in control of when we stay and when we go. Not at all. The ultimate chemo treatment and remission is NOT in human hands. It never has been and never will be up to any of us. I realize the gift that is Gideon is on loan. He is not completely mine. Still, I needed to hear him say, "I promise." Low and pathetic? Probably.

I found myself on my knees and begging God no matter my past faults, my prior mistakes, no matter what, please do this earth good by keeping Gideon here as long as humanly possible. It is my true feeling that he is meant for such huge things. I have this inkling, this mommy feeling that he is going to do something extraordinary in this life. PLEASE let him accomplish those things well into the stage of practical decay. When his face is so wrinkled with the story of a long life that it starts to crumble when he smiles, he is allowed to go to heaven.

This was not my only irrational moment. The prayer was not irrational...making Gideon promise was absurd. I have found myself wondering things like, I was pregnant with Gideon in China. Was it the air I breathed while his cells were developing that made him predisposed for Leukemia? Or, I think about how I was diagnosed with Pemphigoid Gestationis while I was pregnant and had to get weekly ultrasounds... Was that too much for his developing body? And even MORE irrational is the thought that this disease came to be because of my own transgressions in life. My own unwise decisions ala Old Testament. Again, I know these thoughts are unwarranted. I just feel like once I see them in print and out there to the world to view, I will disown them and expose them for the awful lies that they are in reality. Still. They are painful. I'm tired of them having any power over me.

You know what? I think I just discovered that I have these irrational thoughts because the whole reality that Gideon has CANCER seems irrational to me. Kids getting cancer? Innocent little babies with nothing but purity and sweetness oozing out of their pores and radiating from their eyes? Really? It makes no sense. It is no wonder illogical ideas are born from such a bizarre and cockamamy situation.

Then again, Gideon is making me a better person. His spirit and trust in God goes beyond what I have ever witnessed. He is living his "childlike faith" in a way that can only inspire me to do the same. He is already battling and waging war on all that is wrong with the world: strife thrown upon the innocent, but he shines through it. Every single day is a blessing.

Why I was entrusted with the two most unique and gorgeous souls to have ever graced this planet is beyond me. I know, spoken like a mom who loves her babies, but I honestly wonder why I was given such incredible people to raise. I truly don't deserve them, but here they are! That irrational part of life is one that I embrace wholeheartedly.

Friday, October 22, 2010

Gideon the Rockstar

Gideon, Gideon, Gideon... You baffle this mommy with your bravery. One of my best of best friends told me to go to my mental Grand Marais (favorite place in the Universe, and in the Upper Peninsula), so that's what I did. This may seem crazy, but the more our family goes through this journey, the more I feel like every individual puts out his/her own energy. Just being with someone without even talking can either calm me or stress me out -- more so than ever. I always want to be a calming person to Gideon. So, I packed my mental suitcase, listened to the waves, hiked back to a waterfall, and asked God to take over. Then Gideon and I had a sit down conversation about what was to come (Brody happily went to school...he did not want to experience this whole double-muscle-shot ordeal).

I told him that he usually gets his chemo in his port, but today the nurses were going to put it in his legs. I said that this chemo fights the biggest of the sharks so that they don't cluster together and make big bumps in his body, called tumors. We don't want tumors at all. This entire time Gideon was nodding and listening and looking into my eyes with his sweet baby blues. He answered, "Okay. So, they have to get shots?" I answered yes, and Gideon said, "Well. I won't cry. I'll be brave. I don't want shark tumors." I had to smile at him and then explained that as the chemo goes into his leg, it was going to hurt, but that is GOOD! That means the war started and the good fishies are doing their jobs in there. If it hurts, they are winning! I told him it was okay to cry, and that I would hug him the entire time. He answered, "I won't cry. It's okay if it hurts. It hurts when the sharks go away!" and he smiled at me with his huge-eye-disappearing smile. I'll have Gideon as my main course, with a side of his giggle, please.

I had Pandora Radio on as I was talking to Gideon (there is always music...) playing "Gideon music", and the song I posted below came on. I never heard it before, and it was so perfect. I know I'm cheesy. Super cheesy. I really can't help it. Call it a part of my aura. Anyway, this song obviously made me cry but it comforted me at the same time. The song was just another reassurance from above, and so Gideon and I danced to it.

When we got to the clinic, Von and Bridget (at the front desk) looked at me with sad, sad eyes since they knew what was coming. They scoured the toy closet for something extra special for Gideon. I love them. AND! Diane the Music Therapist was there! Gideon was so happy to see her and immediately requested "Wheels on the Bus." Both Nurse Melissa and Nurse Michelle gave Gideon the shots at the same time. I squeezed him tight, prayed, went to Grand Marais and kissed his flushed cheeks. "Okay! I'm ready!" Gideon announced. The nurses counted 1-2-3 and Gideon said, "YAY! I did it!" without a tear. Once the bandaids were on, he jumped off of my lap and hugged Michelle and Melissa like, "Thanks for being a part of the battle." I just sat there stunned.

Awe. Everyone was in awe. I had no idea how rare it was for a child to not cry, but I was told the whole hospital can usually hear the screams. Bridget and Diane said in all of her years working there, they never had a child not cry. The entire desk staff, other sweet patients at the clinic, and the nurses gathered around Gideon and cheered for him, the Shot Rockstar. He was beaming and so very proud. May I say I was exceedingly amazed and thankful? Again, prayers were answered! If anything, I feel like this was a stronger bonding moment for Gideon and his clinic rather than a situation that made him hate it. I am brimming over with gratitude and thankfulness! You people reading this Blog have strong direct lines to the Big Man Upstairs, I know it! THANK YOU for those prayers!

Thursday, October 21, 2010

PEG today...

Yesterday was hard. Gideon was not wanting to eat, felt very urpy, and only wanted to be cradled and sang to. So, that's what I did. He did get sick a couple of times, but the honey made it to the bucket again. His downtrodden persona lasted through his nap and then, Voila! He was better. He still had those glazed-over and red-rimmed eyes that make me feel like I want to invent eyedrops for kids on chemo, but he ate a little and was acting like himself, albeit there was a lack of bonus energy. Nemo Chemo may be a little more potent than the rest, I'm thinking...

Today is the dreaded PEG-Asparaginase double-shot. It is injected deep into the muscle of both of Gideon's legs. Basically, the PEG makes the drug stay in the body longer. The Asparaginase part is an enzyme that breaks down the amino acid asparagine and may block the growth of tumor cells that need asparagine to grow. It is a type of protein synthesis inhibitor. That's a fancy-shmancy way to say that it will stop or slow the cells from generating new proteins (which could lead into developing tumors). Gideon received this chemo once before, and it was painful. Obviously this inhibitor will also slow down the generation of good cells as well, so Gideon will almost certainly need a transfusion (or many transfusions) of plasma to help his body function properly. I'm guessing we will be at the Clinic several times next week for transfusions alone.

This makes me tired. I guess that's a good thing since it's four in the morning while I'm typing this... I am stationed in Gideon's room and I keep looking at him and thinking about today and those shots. The last time he had the PEG procedure was in the hospital-hospital...not the clinic part of the hospital. I am afraid that he will connect the shots with the Clinic and his love for that place will start to fade. I'm afraid how to tell him what he will have to go through. I will tell him. There will be no lies or glossing-over. There will be no surprises for Gideon. I plan on telling him that these shots are even stronger so that it can fight the biggest of the cancer-sharks. Physically, tumors definitely are the "biggest" of the cancer... If this procedure takes away more of the risk that Gideon could generate tumors, I'm all for it. See how I talked myself into this? Thanks, blog.

I think it is safe to say that I'm feeling somber and weighed down again. I have to admit that I have been shaken out of my rut quite a few times by my funny boys. Brody explains what happens in school with such precise detail lately. He goes into describing how other kids act, too. "Mommy, the boy in the green shirt today was not listening. He would NOT sit criss-cross-applesauce and then, And THEN, mommy...he started WALKING AROUND the ROOM while we were doing the calendar! Can you BELIEVE it?!" I love it when he gets all passionate like that. Then Gideon, oh my, that one... My newest favorite time of the day is when I have to wake him up from his nap to pick up Brody. He is always mid-dream as I walk him down the stairs and he blurts out the most random things. Yesterday he said, "Always poop on the toilet...never on the walls." It was like he was in an oracle-state, or something. Thank you for that sage advise, wise one. The day before that he said, "Jesus gave me an ice pack for my head. Wasn't that nice?" The day before that he was mumbling about bouncing clocks. I didn't get a quote on that, just keywords. It always makes me laugh. Laughter has been my anti-gloom agent. I guess that's obvious and true for us all, right? Still. I'm thankful.

My prayer request for Gideon is that he will feel minimal pain for this procedure, that his adoration for the clinic will not diminish, and that this chemo will do its job: prevent tumors. Again, THANK YOU for the support and love!

Monday, October 18, 2010

A Pie of Love.

I think our lives can be chronicled and mapped out based on two things: food and music. I find myself thinking to myself, "Ah-yes, those were the Mountain Dew drinking years..." or "Spaghetti O's is the food version of 'The Muppet Show' in my world!" or "All this pasta I've had lately reminds me of my brush with becoming a vegetarian, which turned out to be more of a pasta-tarian." Then there's music. I was tuning through the radio stations and Steve Winwood's "Higher Love" came on. I was instantly teleported back to 1986 in my family's red Bronco belting out my own version of the song, "Bring me a PIE of LOVE!" with the windows down. It made more sense to my seven-year-old brain with those lyrics, I think. Is there a higher love than pie? I think not. It still makes more sense, come to think of it.

Anyway, my point is this: Chicken Drumsticks (capitalized because they are now members of our family -- they are that important) are now synonymous with Gideon's chemo treatment. He is addicted. It is only the first day of the steroids, and I don't care what the doctors say: the boy is already feeling the effects. I will see a drumstick fifteen years from now and remember Gideon's growls for more, more, MORE! Before he went to bed tonight, he polished off five grilled drumsticks, a fruit smoothie, a yogurt, and apple juice. I'm hoping that means he'll be too full to wake me up tonight for more. I am also crossing my fingers that his Kytril doesn't wear off in the middle of the night and he ends up puking up all of this food. I will be stationed at his bedside tonight -- with the puke bowl. Watching Gideon get sick is sad all on its own. You all know how much it breaks me, or corrodes me as I said before, but I don't want him to puke even more due to selfish reasons, or reason (singular). I loathe laundry. I despise puke-laden laundry even more. No throwing up for YOU, Gids Monster! Sleep, sleep, sleep, you will! (Brody has been talking to me in Yoda lately. I'm transferring it here.)

Today was the first day of Gideon's Delayed Intensification. When I woke him up to get ready for the hospital he leapt out of bed singing, "YAAAAY! We are going to go to the HOSPITAL today! I GET SLEEPY MEDICINE!!!" He loves sleepy medicine, and yes -- that kind of worries me. But, I'm thankful for all of the positive energy. I had no energy this morning regardless of the emotion behind it. I'll admit to tossing and turning these last few nights worrying about what is to come and is now here; however, Gideon did great for his spinal and allllll of the other injected chemo. Thank you for all of the calls and emails asking how it went.

The newest chemo in his IV is BRIGHT red-orange. The nurses called it Kool-aid chemo. I told Gideon that, and he looked at me like you-poor-clueless-thing. He then said, "No, mama. That is NEMO chemo. See the color? The Nemos are swimming in to fight the sharks." Oh. Is it possible for me to fall deeper in love with my son? Because I did. Right then. It did look like Nemo's coloring and....the rhyme! Nemo Chemo! Swooooon. So, to YOU, microscopic Nemo Chemo: please be nice inside of my boy. Gideon thinks he gets sick after chemo because that's when the chemo is battling the sharks. Obviously when there is a war waging from within, we'll see some effects, huh? He makes me so very proud to be his mommy. And, I find myself picturing everything from his own perspective instead of my grown-up-what-if worried view of it all, and THAT comforts me. I see the Nemos with angry eyebrows and set pout-lips that are more intimidating than sad, circling around, around, around the cancer sharks until they implode. They wear their stripes like battle paint. Or, I see those Nemos with mini-spears shouting out battle cries and charging forward. Millions of spears can take on shark teeth, I'm sure. So, yes. It is now "Nemo Chemo."

The Kytril Gideon was given has done its job in warding off the sickies so far. I gave him even more anti-nausea before bed tonight. We shall see how it all pans out. I'm not going to guess or speculate or have any expectations. I can tell Gideon is a little more sleepy and groggy today, and I'm hoping that's more from the spinal "sleepy medicine" than from the chemo. Again, I will wait to worry. Steroids may be back in our lives, but my freezer is armed with frozen pizzas and my fridge has left-over drumsticks awaiting the reheat event. One advantage is we know what this looked like before, and we got through it! We'll get through this, too.

In the meantime, here's the SONG that will take me back to these chemo days, as well. There are many on Gideon's soundtrack or playlist, and I have already shared this song with many friends. Whenever Gideon gets chemo I say, "Look, Gideon! You're GLOWING!" and Gideon tries to cup his little hands around a piece of his skin for a glimmer of the magic. Then this new HAPPY glowing song made its way into our lives. We play it on the way to chemo now. It is so fitting, and so Gideon. He bobs his head to the beat and belts it out...much like his mama did in the Bronco. We will make happy memories within a sad time. That's the goal, and we are achieving it.

Sunday, October 17, 2010

The night before the big dance....

Tomorrow morning we head to a looooong day of chemo. I already went through the list of shark-slayers in my last post, so for now I am just reflecting upon all of the joy the last few days have brought to us all. Ann Thornton completed her half marathon in Gideon's name today! I was hootin' and hollerin' like crazy. She wants me to run in the Half Marathon with her in two years....hmmmm... This makes me laugh. However, nothing is impossible!

I want to just post some happy pictures tonight. I want to smile - that's all. Brooding about what is to come will not be helpful at all. Please smile with me as you look at Gideon on his NEW bike from Bill and Elizabeth Serrano, as you laugh at the pictures of Brody and Gideon beating that shark pi├▒ata to shreds (all while screaming "NO MORE SHARKS!" Ahhh...what a memory. And a stress reliever. I'll admit to getting in on the action) from Courtney Kerwin, and of Ann celebrating the end of her Half Marathon to benefit Leukemia/Lymphoma Society.

Please think of Gideon at 8 a.m. tomorrow morning as he goes under for his first chemo dose for this phase... We are praying for no adverse reactions.

(For some reason, these pictures uploaded backwards...starting at the end and going to the beginning. Please start at the bottom of the screen and move up. I would fix it, but computer code kind of intimidates me.)










Saturday, October 9, 2010

Basking.

Brody said it best yesterday, "I really like having this piece of quiet." I know he meant "peace and quiet," but I like how he said it better. This is a piece of time that I will look back to and remember and feel gratitude for these moments. Gideon is feeling great and Brody's anxiety is diminishing. It's autumn. It's football season. There have been crazy beautiful days thrown in, and the sun has been a blissful reminder of how blessed we are. The here-and-now is incredible.

It has been a respite before the storm that is coming... I know I need to look ahead so that I can prepare my heart for what we'll face next. The new chemo phase will begin with lab checks on Friday, October 15 and then Delayed Intensification will begin on October 18 if everything checks out. Honest truth: My eyes immediately teared up when I typed those two words that I have been dreading (Delayed Intensification). Gideon will begin his daily dosage of Decadron (steroid that made the sweetness of my boy a rarity) on the 18th as well as Vincristine, a new chemo called Doxorubicin, Methotrexate through the spine, Cutoxan, ARA-C, and oral 6 Thioguanine. That is Day One. All in just Day One. Never has he had that much in him. There are so many drugs - new ones. After viewing the possible side effects, I signed off saying that "I understand the risks." Really? Do I? The answer is I understand what could happen if we don't go through with this phase, and that is far worse. I have had many people ask me what this chemo will look like, and with the beautiful way Gideon handled the last phase, I am praying that he will do the same with this one. I want him to wow the clinic with his textbook perfect treatment with no drama interfering with it, please. I realize he will not be himself. I am soaking and basking in the sunshine that is my little honey now and searing the memories of his easy laugh in my heart for the difficult times on the way. My iflip has never seen so much action. If it's okay, I think I'll stop with Day One in what I report. I feel myself dipping a bit in my optimism and the "DAY AT A TIME" philosophy has been the perfect one through it all.

Along our day-at-a-time journey, we have met a new angel: Lila Armock. Lila offered to take pictures of our family when she heard about what was going on, and now was the best time to do that. When I emailed her to see if she was still interested, she changed her plans to come out to Portage (she is from Rockford) to shoot us. Not only did she donate her time, but her artistry as well. I cannot get over the way she captured our boys' personalities so perfectly. She froze this healthy moment-in-time completely. Please check her out:
Our Family Pictures

Friday, October 1, 2010

Take a ride on the MOOD swing.

Menopause is gonna be a piece of cake someday. The intensity of my mood swings makes the thrill rides at Cedar Point seem like the slowest elevators ever devised. I go from rock, rock, embarrassingly low-bottom to extremely elated in one day. Just one. Right now: ELATION. It's difficult to breathe not because anchors of sadness are holding me down, but because I feel like cartoon love hearts are going to firework out of me if I breathe too deeply and I'll end up pulling over my car and kissing strangers. I honestly had this impulse today as Gideon and I drove home from the hospital. The sun is out, the sky is my favorite color blue, and the clouds are only there in wisps to remind us of the gorgeous fragility of it all. And the leaves. Stop it. It is the setting for a romantic comedy.

Gideon had his final dosage for this phase today -- his highest one thus far. He will begin Delayed Intensification soon, but let's not think about that horrendous phase just yet. Let's just bask in the gloriousness that is conquering this last phase. Dr. Lobel said it is exceedingly rare that a child is able to go through this entire last phase without having to delay a chemo dosage. Like insanely rare. Gideon? He had each dosage as scheduled. No viruses held him back, no low blood counts, NOTHING. It's prayer. I promise. He is enveloped by so many of you. We can all feel it. On top of that, Nurse Michelle exclaimed, "Look at him! He doesn't look like a chemo kid at ALL!" and he doesn't. Not one bit. Happiness still exudes out of this boy and he is aware that his smile makes everyone else smile. He is on a mission for world peace one smile at a time.

As we were leaving today, Gideon and I were stopped three separate times by strangers. Gideon was wheeling his little chemo-entertainment suitcase down the hall and through the parking lot. He had his little fleece on and jeans, and I just wanted to devour him, my little humming happy gem. But I'm his mom, and a tinge bit biased. Each person who stopped us commented on how happy and joyful Gideon is. How he just made their day. One stranger dubbed him "Sunshine-boy". NO doubt. Body full of chemo and he is singing the "Chemo Tube" song we made up in the hospital. Even during the chemo as we watched the neon fluid drip through the tube, Gideon said to me, "This is like the coolest snake EVER, mom! Hear him hisssssssssss? See his winding body?" I never noticed the sound of the IV before, and he was right. His smile was gigantic once he pointed that out, and his personification (or I guess this would be animalification, in this case) skills make this momma P R O U D.

So, now you know why I'm so ecstatic. And now he is peacefully sleeping in his bed and his big brother is at school. I am on my deck. In the sunshine. Let's keep this real, though. Two nights ago I blogged, and I didn't post it. Here it is, verbatim:
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9-29-10
I have been staring at this white screen for awhile. I have no idea what to type, but I'm praying that the staccato of my fingers hitting the keys will somehow make me feel better (or it'll distract the tears). I always seem to feel calmed after blogging, so I will use this as my outlet to try and formulate how to respond, to react, how to just...be. I am completely lost right now and heartbroken and every kind of broken I think I can be. Praying alone has not helped. Talking? I don't think I can. Sweet, precious, artistic, introverted Brody needs prayers. We all do, but the issues in this little boy's heart are enough to completely obliterate mine.

I got a call from Brody's school today. He had a form of a nervous breakdown. He got pale, clammy, his eyes were dilated, and he couldn't get a deep breath. He told his teacher (who, I am convinced is an absolute SAINT and an answer to prayers) that he was just "tired." Right. He did forget his library book in his bag, but that was not enough for this hysteria of sorts. The boy will not talk to me. He will not tell me what is on his heart. He won't open up about the bus and why he now despises it and I must use a sticker chart to get him aboard each day. I'm at a loss. And his tiny, little body finally responded to this pent-up horror he has inside. I want it OUT. I want the sadness I see in his eyes GONE. Give it to me. Green Mile the bad stuff into my mouth, Brody. PLEASE. He seems the most at peace when he's at his desk drawing or painting. He can spend hours doing that if I let him. Isn't that abnormal for a five-year-old? Then again, I am feeding this obsession with more art supplies because it is so calming to him. And, he actually is very talented (already). But all the art supplies in the world is not going to solve the enigma that is my Brody's worried soul. I WILL get him someone to talk to... In the meantime, please pray for him. I am broken over this. This is only second to the day Gideon's heart seemed to start to fail at the hospital, and that's a fact.
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Shortly after I typed this, I couldn't stop crying. Tom was not home and the kids were in bed. Two friends talked to me and listened with their hearts. People who listen with their hearts don't interject and don't try to talk you OUT of it, they talk you THROUGH it. Thank you, talker-throughers. You are, I'm convinced, God-sends. And, my friend Kelly Morgan also referenced a song that completely encapsulates you talker-throughers, you helpers sent from God (directly) and into my life. You soothe my soul. The song below is the one. I think you'll get it when you listen.

I used my Psychology MINOR to get through to Brody, while we were color-pencilling a picture for his teacher. I started with the bus. I asked questions like, "Who do you sit by? What do you talk about? How does it make you feel when...." and so on. He kept saying, "I'm just not a bus fan, mom." I asked how the bus made his insides feel. He said he gets a tummy ache. At first I assumed, AHA! MOTION SICKNESS. Then I asked, "What is it that makes your tummy feel sick?" He answered exactly like this, "Someone always coughs, and we're not allowed to open the windows. I just KNOW I'm going to bring that cough home to Gideon and he is going to have to go back to living in the hospital." Oh. Gorgeous soul. He is internalizing everything. Every single tiny aspect of this cancer. He no longer has to ride the bus. His school is around the corner, and I feel comfortable dropping him off at the door. He knows right where to go. Why start the day with a belly full of scary worries? No need.

As far as the panic attack goes, I think things layered until he cracked. He did whisper in my ear, "Everyone with cancer dies. Someone told me that." I have no idea if it was a student or he overheard a commercial, I don't know. This fact processed in his head the moment before the panic strike, though. He finally told me that is what he was thinking about: Gideon dying. We will get him counseling. We will work through this. Just please, pray for him. He is living life carrying the heavy, heavy burden of believing he truly IS his brother's keeper. I'm thankful he finally opened up to me. Art supplies will ALWAYS be on hand in this house.

Wow. I told you I'm a mood-swinging fool. Even this entry goes from BLUE SKIES! to sad, sad hearts for my first baby boy, Brody. Thank you for coming along on this journey with us. Thank you for praying. Each prayer is WORKING. I dedicate this song (courtesy of Kelly Morgan) to you, my true friends (Kelly being one of them, of course).