Sunday, August 29, 2010

NEW Bedrooms are here!!

Please enjoy our version of "Cribs" -- Brody makes sure you don't miss a detail!

THANK YOU to all of you who have worked so hard on these rooms! Wow! Wow! WOW! Kelly and MIke Jensenius finished it up yesterday. By "finishing it up," I mean they stayed here for FOUR HOURS. How do I thank them? Any ideas?

The boys cannot wait to go to bed tonight. This is a good thing since it's my first day back to work tomorrow. EEEAAARRRLLLYYYY morning, here I come. Mattawan friends, I'll see you with my gallon of coffee in hand! I'm excited to see everyone, but I am not letting myself think beyond tomorrow. Day at a time. Day at a time...

Wednesday, August 25, 2010


What a difference a day makes. One of Gideon's medications is making him feel as though sleep just isn't a necessity. The night before last he struggled to fall asleep until midnight and then was up and ready to tackle the day by 3 in the morning. He actually came up to me at three and said, "I think I hear birdies, mommy. WAKE UP!" It was then that I realized the dire importance of my complete adoration and love for this boy. If I loved him a smidgeon less, I would have locked him in the basement since I was tired to the point of feeling like I was hovering over myself. Every joint hurt, my ears were getting worse, and being alive did not hold the same amount of joy as normal... I actually cried and begged Gideon to sleep, and I got him to lay still and quiet for a little while. Still, three hours of sleep is not the greatest.

I was saved by Linda Larkin and Deb Petro (two of my first grade colleagues). They came over yesterday morning with breakfast food, toys, and unending patience. I was starved for all three things (even the toys).

I took Brody to Pre-K/Kindergarten screening at Portage while the ladies took over watching my Sleepless and Energy-Driven Gideon. Brody did an exceptional job at all "stations" of his screening. I was most impressed with his vocabulary. There were cards depicting different scenarios and the administrator would ask things like, "Show me someone discussing" or "Show me arguing" or "Show me experimenting" or "Show me someone being defiant." He is a language guru, I am proud to say! I had a moment of which I was not proud during the testing. During the Emotional/Social testing, I had a breakdown. I know, the irony isn't lost on me. Brody was asked what he did for his birthday, and he said, "I had a Spiderman cake and alll of the Bronco hockey team came! Now they are my friends! And...and... I had a party at Pirates Island and there were real pirates there!" Then his face got kind of sad and he said, "But...we had just found out my brother had cancer so it wasn't the best birthday ever. Almost, though." Unleash the waterfall. The test administrator started "sneezing" (and she won me over -- that is my tear-hiding tactic, as well) and I sat behind Brody, crying and digging for tissues.

Brody ended up testing Kindergarten-ready, but as I talked to the test-readers, I mentioned Gideon and my need to pull Brody throughout the year due to illness in his class. I can't take any chances. So, due to the possibility of missing school, emotional needs, his summer birthday, etc., we placed him in Pre-K. I am beyond happy with that! I even got to talk to Brody's future principal and she said we could set something up so that a parapro can bring Brody to the bathroom to wash-up and change before he is escorted out to the car of whomever picks him up. People have been calming me right and left. That was something I have been terrified over. What if I have to pick Brody up and Gideon is in the car? I can't take him into the school... Wait to worry, huh?

Once we were home, Deb and Linda remained so that I could NAP. And I DID! The boys were in heaven with these child-lovers and fun people. Talk about young children experts! They saved me from the inevitable disintegration or spontaneous combustion. One of the two were bound to happen, but didn't due to the much needed ZZzzz's.

After my nap, I checked out the mural in Gideon's room painted by Dave Larkin. The "Warrior Gideon" name on the fighter jet was an instant eye-mister. It is the most gorgeous mural I have ever seen. Gideon has been going to bed saying, "I sleep in the clouds, mommy!" His room is becoming his own private sanctuary.

Speaking of room remodeling, Kelly Jensenius is our decorator, and I cannot wait to see the gorgeousness that will be these rooms! I had a posse of middle school teachers painting stripes in Brody's SPORTS room, and it looks marvelous. Mattawan high school teachers did the first coat. We are surrounded by helping souls. This is the most excited I have seen Brody and Gideon in a long time! Thank you!

Also, thank you for the prayers. They are getting us through! Regardless of Gideon's lack of sleep, I am thankful for his spritely attitude and energy. We love the good days. I know his numbers will dip soon, so we will take advantage of this ball of energy now!

Sunday, August 22, 2010


If I could paint Gideon's soul it would be in all shades of yellow, but mostly sunshine yellow. It's true that he has that yellow hair. I don't call it blonde. That is too dull of a word. He has yellow, halo-shining hair. Every single time I go into the clinic, nurses and doctors comment on the fact that he still has it. If you were to brush through it, you would see bald spots underneath, but it is still there. The downey chick soft curls distract attention until the brilliant yellow that is Gideon permeates your heart into melted yellow butter. It happens. Ask anyone who has even talked to this boy. He is my yellow man. Even when his hair is gone, I'm certain that warmth that you feel while sitting next to a window on a sunny day in winter will still emanate out of Gideon. He warms straight through.

I, on the other hand, have had the colors of me significantly faded. I am kind of falling apart, and I am lucky to have my sunshine yellow son and my calming blue boy son to patch quilt my persona back into something recognizable. I had a sinus infection which I ignored (besides dowsing it with a Netti Pot) and that turned into an ear infection. I spent Saturday at the clinic getting medicine (and refusing to sit in the waiting room...sickies were everywhere!). The nurse came and got me from outside and I wore a mask the entire time I was there. I was separated from my family once due to illness, I don't want to be quarantined again! The very last thing on this planet that I ever worry about is what others think. I don't know if this is a good or a bad thing... I have the medicine now, and I am praying that I can get back into the groove of life soon. It is no fun being humdrum and blah. None at all.

I have been going into my classroom to clean up the pit that was my room every night this past week. As soon as Tom has gotten home, I have shipped out. We found out Gideon had cancer the day after I was done teaching, and I was planning on using my Records Days/Professional Development days the following week to organize and clean. Yikes. That didn't happen. I was beyond my limit worried and paranoid that it would never be ready in time for school to start. Then, I got the phone call. My saint-of-a-principal (I'm not kissing up, it's TRUE!) Derek Wheaton called and said the MIRACLE WORKER parapros wanted to come in and set up my room for me. Just when I was on the verge of a major panic attack (not even kidding), this is what I found out. I hung up and sobbed and cried over the sheer beauty that is my staff (mingled with sniffles of relief). You people have been such an amazing support network for me. I adore you. I can never-ever thank you enough. You will all have a bagel in your hands on the first day of school. Yes. You give me solace and love and peaceful thoughts and cards and prayers and miracles and furniture and comforters... I will give you a bagel in return. Doesn't quite balance, but something must be done to thank you. The Polish Mommy in me repays in food, even though I can never repay you. Not ever.

Gideon has started getting his every-ten-days chemo in his port on Thursday. Every dosage of Vincristine and Methotrexate will gradually build and get more potent with each visit. He has also been put on an appetite-inducer since he has lost so much weight (talk about a life of extremes). This new chemo isn't really new, it was the stuff they used to put into his spine and now he gets it in his port. He also gets more nauseous from this new method, so we are on some heavy anti-nausea meds as well. The Vincristine is the stuff that makes him feel like he's walking on needles and makes his knees weak. He is waddling again. This also has to do with the fact that he had a major spill outside and his knees were very scraped up. Those scrapes aren't healing as quickly as a "normal" boy, and it just reminds me of his acute fragility. Gideon: My little piece of yellow crystal.

Sunday, August 15, 2010

Magic Juice

Ahhhhh... What a relaxing, low-key weekend. It began in a very exciting way. We got our paperwork from Make-A-Wish that included an adorable card for us to read to Gideon. It told him that he was allowed ONE magical wish and then went on to prompt him with questions like, "Have you ever wanted to go somewhere? Is there anyone you would love to meet?" Questions like that. (And, no... I didn't try to lead him into the decision that singing with Ewan McGregor for a day is REALLY what he wants. I was tempted, but no.) He basically can wish for anything except for a house or a car. When I presented this to him, he took a in a sharp intake of air and his eyes got huge. "WOAH!" he breathed. Then, he got quiet. He sat still on the couch and his eyes kept sparkling with dazzling thoughts. I didn't want to rush him. Watching him dream with his eyes open made it so I didn't want to get out of the water of that moment. It was too nice. Innocent. Sweet. In that time period I think all that existed on this planet were Willie Wonka sugar lands, race cars, all-you-can-grab toy stores, and every friendly flying dragon the galaxy could hold.

All of a sudden his eyes blinked wide and he shouted, "I GOT IT!" I could survive on that smile alone when he came to this realization.

"What did you decide?" I asked.

"I want...." he paused for the dramatic flare and his eyes glimmered mischievously. Then he whispered so quietly the answer that I practically had to put my ear on his mouth, "...magic juice!"

I instantly smiled because of the sheer beauty of his innocent view of the world. Also, because he still believes in magic. This is to be celebrated in this warp-speed growing up he has had to live through recently. "What does this magic juice do?" I asked, thinking he would rattle on and on about the way it would take him anywhere or make him fly.

I was unprepared for his answer. I was still in the world of Make Believe, and as my parents can attest, it is always difficult to pry my out of that land. He looked at me with an are-you-kidding-me look in his eyes and even shook his head as if to say, "DUH!" And then he said, with his brow all furrowed in seriousness and his hands gesturing for emphasis (I love it when he talks with his hands...I'm a sucker for that), "The magic juice will make me better just like this!" And he clapped his hands once to show the instantaneous effect of this potion. He smiled and waited for my normal jubilee response to the happy news.

But my heart was stuck somewhere between my lungs and was getting strangled with every breath. Beautiful boy. Beautiful, beautiful unsullied soul boy. As always, when my heart is being strangled, tears come. Blink. Blink. Blink them back! I had to snap out of it so that we could keep this conversation spotless of anything that could possibly resemble the negative.

I then helped him streamline his thoughts. We talked about how they can grant wishes, but the miracles had to be left to God. That we will continue to fight those sharks and keep them away, but this organization would grant a WANT that would make him feel so very happy during the battle time. As we went through the questions again, he brought up Disney World (I didn't prompt, either!) or a Lightning McQueen Powerwheel car he could drive down the sidewalk. He said if he got a Powerwheel, Brody would have to get one, too. "No fun driving alone," he said. So, he is still trying to decide. I am personally hoping for the Disney trip :)! I'll let you know once he reaches a final decision.

Another soul-lifter was the fact that our NO SHARK T-Shirt sale was successful beyond all I could have anticipated. I will let you know the final numbers when we cut the checks! I can NOT wait to donate to organizations saving Gideon's life. Thank you, Oslund family and all of you who donated. If you ordered a shirt, could you please take a picture of yourself wearing it and email that picture to me? I am making a scrapbook (looking like it will be more like scrapbookS) for Gideon and I want him to see every card and every single person who supported him during this period of his life. Whenever he is feeling down about life, I will take down this book (or books) to show him how important he is in this world. Even strangers love him! My email is THANK YOU, everyone! I know Mike had to place the orders once the August 7 deadline came to pass, so once they are printed they will be shipped to you as soon as possible. Again, the floods of emails explaining who bought them and why has been food for my soul more than you know. There will even be an entire cheerleading squad donning Gideon's face very soon! You ladies fired up this crowd with the news alone...

Thursday, August 12, 2010

Off the Rails

I have been quarantined from the house since I have been knocked over by that nasty stomach flu bug. At first I was holed up in my room, but little Gideon just sat criss-cross-applesauce in front of the door, staring and waiting. Then I started thinking about that gap underneath the door. I bet you can tell where I'm going with this. Yes, I could sense the particles from my sick breaths evolving into that personified Mucinex guy. Only my Mucinex guy had horns that liked to rip holes into the sides of the stomach. Nasty. Truly. So, I went to an empty home that was offered to me since that family has been on vacation. There was a lot of sleeping and puking, to tell you the truth. It really wasn't a getaway. It was a place that had a couch three leaps from a bathroom. That made it perfect for the functionality of it all.

I went to see my doctor this morning to find out what I had to do in order to GO HOME (I have not seen the boys since Monday, really). I was told to let it run it's course and come back home tonight, once the boys were already sleeping. My stomach was teetering all day long, and making really scary noises. If I had a microphone, I would have recorded it all for Halloween. I was picturing the Creature of the Vile Bile Lagoon. What got scarier is the fact that I have not watched daytime TV in a ridiculous amount of time. I tuned into Rachel Ray for the first time. Yup. First ever, and she is adorable and sweet and makes me want to cook. I get it, America. On top of that, she had Michael J. Fox on the show (I promise this is going somewhere). I ended up sobbing profusely, and it shook things up even more in the stomach region. I used to really like noodles. Not anymore. Here is what Michael J said, the guy I feel like I grew up knowing in a Delorean-werewolf kind of way:

"However well you plan out your life and whatever courses you take and whatever degrees you get, your life is really going to get most interesting when it goes off the rails, when it blows up and something happens that you didn't expect - you have some loss or some misadventure. If you're open to what happens next and you just kind of accept it for what it is - you're going to learn something and your life will improve."

Thanks, Michael J Fox... That resonated with me. I'm off the rails and accepting it. This made me think of our past weekend together. Gideon started to sob because he wanted to go to the "ZOOOoooOOOOooOOOOooo!" We can't go there because of the spores floating around. That isn't a paranoid mom thing. That's a straight out instruction from Dr. Lobel. So, we went to the Fish Hatchery where Gideon got to feed the fish outside. There was no petting, but he was still in awe. On Sunday, he went on and on about going to the Airzoo to see airplanes. Again, we can't go because of the germs. So, Tom built the boys rockets and we set them off in an empty field. We call this "Cancerification" in our house: Zoo becomes cancerified into the fish hatchery; Airzoo gets cancerified into rocket launching. Maybe it sounds like we are taking such a serious word and misusing it, and some may even feel uncomfortable by this terminology. But as Micheal J said, we "accept it for what it is," but we SURE are not going to let it douse our fire of fun. We will make fun of it before we do that.

Another BEYOND fun thing that I MUST share: Gideon, Tom, and Brody got to go on a PLANE RIDE this morning. It was set up by a former student's mom and dad (the Gouley Family). I am beyond sad to say that I was not allowed to go. I couldn't even be there for pictures, per the doctor recommendation. Even when I explained how important it was to Gideon, she said, "Not getting that boy sick is as equally important." Yes, I know. BUT: GIDEON FLEW THE PLANE and even got logged for his first flight. He signed the log book we were given (precious scribbles), and we plan on adding to it as the years come to pass. He told me on the phone that it was "The best thing ever!" I will upload pictures soon, but it has been so long since I have written on this blog! My fingers were ready to get it all out there... Micheal J Fox quote and all.

As far as Gideon's health is concerned, he is still anti-food, and is still losing weight. BUT, he is in GOOD spirits. I need to thank all of the healthy people who came to my aid while I was sick to watch the boys! THANK YOU, THANK YOU, THANK YOU!

I cannot wait to see their little faces in the morning. The earlier, the BETTER! For once, I truly mean that! See what happens when life goes off the rails?

Friday, August 6, 2010

Wooo-oooo-Wooo-oooo (that's a police siren, if you're wondering)

There was a heavy knock on the door at 8PM and I saw the flashing red and blue lights outside my window. Most would panic, most would go through all of the possible reasons two squad cars would be in the driveway. A mental checklist would ensue. Everyone worries about a possible loved one being hurt, why then the lights? Framed. That's what it was. Maybe even an accessory to a crime without even knowing it (it's true! There are movies alllll about that!) Thankfully, I didn't have any of those worries since I was called ahead of time.

Gideon's little face was mashed up on the glass and he was ooooo-ing and ahhhhh-ing over the gorgeousness of it all (it was a Goonies moment for sure, sans the pizza and pop). These police officers made my boys' night! I took out my hand sanitizer to clean off all of the bad-guy cooties from the handcuffs, so no worries, readers. We had a crime scene investigation presentation as Brody's prints were lifted off of the car, and his footprints from the grass. Gideon was most impressed with the guns in their holsters (which were not taken out). He did get to see the taser gun. After they were given police-themed gifts and a couple of stuffed animals (which they are both sleeping with tonight), they went to bed with visions of exciting police action dancing in our heads. Thank you, Portage Police! You guys (and gals) were phenomenal and patient and loving.

Gideon had his spinal chemotherapy yesterday, and yet again, DIANE THE MUSIC THERAPIST saved the day! The two of us sang "Somewhere Over the Rainbow" for an entire half of an hour after he was awake, but still in la-la land. He has to remain laying down flat for that time so that the chemotherapy soaks into all of the right places. I have had to pin a thrashing boy down in the past, and that is never pretty and always heartbreaking. Music heals and soothes, even when someone is still held within the confines of a sedative. It was peaceful.

While our throats were getting raspy from the singing, Brody was having his own party with the Marciniak family once again. They are our chemotherapy cheerleaders! As we were approaching the door of the hospital yesterday morning, Gideon started to giggle and said, "LOOK MOM!" Dawn, Maddie, and Isaac were hiding behind concrete pile-ons and popping up like that little gopher game while wearing silly faces and waving glittery pom-poms. They also brought food, fun, and most importantly...smiles. I love you, Marciniaks! We are so thankful for you.

The spinal went well, but this daily oral chemotherapy is still not a friend of mine. Little Gideon is becoming very little, again. His appetite has not come back and he does feel yucky sometimes. But, he is completely back to his sweet self. I want to record every single conversation between my two boys. They induce instant smiles and sometimes a stifled laugh as I listen.

We do have a piece of beautiful news: Dr. Lobel said that Gideon's blood chemistry showed his infection-fighting capabilities were up JUST enough to be able to go to the movies! Here were my instructions: Sit in the very last row (since coughs and sneezes would travel down) and sterilize the seat. I still didn't want to take any chances, so I also made Gideon wear a mask until we were seated, covered the chair with a blanket from home, and held on tight to my hand sanitizer for quick use if he touched anything other than his blanket or popcorn. Yes. I have become that mom.

We went today. I had no idea how much more his counts would be lowered by the spinal chemo in the days to come, so I wanted to go as close to the time it was all last checked (yesterday). Hardly anyone was there, and it could not have been more perfect. Gideon and I have been watching the trailer for "Despicable Me" all week. Over and over and over. It is because it made him belly laugh to the point of tears, and I have so missed that sound and experiencing that immense joy bubbling out of him. He has the kind of belly laugh that goes silent for a minute while his body still shakes. He has been traipsing around the house with his stuffed "Little Gog" saying, "IT's SO FLUFF-AYYYY!" like that adorable girl in the movie. Of course, on the way home, Brody and Gideon were throwing out new quotes and laughing some more. Gideon liked how the toilet shrunk and then the toilet water squirted the bad guy in the eye. Bathroom humor is popular at my house. Anyway, it felt so right and normal to have done that today.

I think this adventure did tucker Gideon out, and he went to bed as soon as it was offered. He also napped for three hours today. Sleeping equals healing, in my book. So, I am thankful for this healing day, for those boys dreaming about catching bad guys in their police cars, and for the quiet. Nigh-night.


Tuesday, August 3, 2010

Snowmen in August

"I want to make a SNOWMAN!" That was the first thing out of Gideon's mouth after his nap. He then went on to describe the most elaborate snowman he made in his dream. There was even a "purple scarf with sparkle dots on it" (I think that was added for my benefit, the honey). I told Gideon that yes, we'd make a snowman, and Brody overheard. The big brother looked at me like, "Oh great. She's done for. Lost it. The egg brain is now officially scrambled. There goes my crazy mommy..." The sad part was he looked like he knew it was coming :). So, we made some marshmallow snowmen, as seen above. We named them, let them have their first ever conversation on earth, and then promptly ate them. A short and sweet life. Ha! "Sweet."

We then packed into the car and went to the hospital to pick up a human pooper-scooper. Yup. We get to collect Gideon's feces and bring it back for testing. We are making it into a joke because, come on! How many afternoons begin with candy snowman and then transition into gathering materials to trap poop? Brody was the best at coming up with poop jokes. His new school teacher is going to LOVE him next year. He made a loud toot sound in the back seat and then yelled, "MOMMY! QUICK! PULL OVER! GIDEON IS GONNA BLOW! LET'S UNWRAP THAT POOPER SCOOPER!" Then PAPARAZZI came on the radio and Brody changed the words to "POOPY! POOPY GIDEON!" Did I mention that Gideon will have NO problem dealing with bullies someday? He just laughs. The best retaliation, if you ask me. If it makes you feel any better, I overheard Brody give Gideon a Bible lesson shortly after the poop jokes. Here it is, I had to type it out as soon we got home so I wouldn't forget it:


"What, Brody?"

"Did you know there is a Gideon in the bible?"

"NO! I the only Gideon!"

"No... he lived long ago in the 1950's." (Yes, he really said that) "He was cooler than David and Goliath! (Gideon's favorite Bible story) You know why?"

"Why, Brody?"

"Because David beat Goliath with a stone, and Gideon beat a WHOLE ARMY with MUSIC!"

Swoon... Swoon... Swoon... I needed to get that story in my blog just so that I have it in my arsenal of cuteness to reminisce and wistfully ponder over in my old age sappiness. I wonder if I'll get even more nostalgic as the years progress. I bet I will.

You're probably wondering why we are collecting poop. Let me backtrack. (Do you get dizzy reading my spiraling thought process?) Since Friday, or maybe even Thursday evening, Gideon has had massive diarrhea. He also finds food repulsive as well as any liquid beverages. I feel like I am running some kind of circus just to get him to take a bite of any meal. On top of that, we have the constant runs to the bathroom. These runs extend into the night (and yet again, the pun comes to visit). He has not had a fever, and for the most part he is behaving like the sweetie he is. He just gets irritable when he is about to go or when he feels like he's going to vomit. So, Dr. Lobel wants us to collect so that they can test for any problems beyond chemotherapy kickbacks. You know I'll let you know when I know...

We are lucky that even though we have had these issues, we had an ALMOST normal weekend! Still there has not been a ton of sleep due to the bathroom problem, but there was also summer sun! We completely escaped as the Wolthuis family invited us to their trailer on the beach for some summer fun. Gideon mostly sat on my lap, but he also sat on my lap for a kayak ride! We were so very thankful to relax together and chat... And, we didn't have to worry about germs. It was freeing. Thank you, Wolthuis family!