Thursday, June 30, 2011

New Family

Before I start the update, I must thank The Red Cross Headquarters in Kalamazoo for inviting us to your 10-plus gallon donor function. It was an honor to be around people who have saved the lives of thousands! To everyone who has donated in Gideon's behalf and you are due for another poke: Gideon is still collecting those fishies. So make your appointment, please. :)

Gideon's ANC is just above 1200, so these numbers are okay when it comes to fighting infection, but not high enough to increase his chemo dosages. He is back on steroids and the food cravings are much pickier right now. Food he has always loved, he spits out. Sometimes I just want to taste what he's tasting. Sometimes I wonder if he has subconsciously attached food to memories and that's why he's grossed out. I don't know, but I really loved the stage when all he wanted was tomato soup. Why can't he just crave asparagus?

Not many of you know this, but Gideon was diagnosed with a Sensory Processing Disorder when he was just a baby. Water on his skin felt painful, tags on shirts, etc. His OT appointments rid him of the more pressing challenges, but still to this day the texture of all fruit and vegetables make his gag reflex work double time. As you can imagine, this struggle along with the stomach issues chemo has brought to us has made eating such a difficult task. For a long time, I could puree fruits and veggies and he would eat them that way, but not anymore. Once again, he is dealing with so many variables. He has now been referred to an occupational therapist for further help in getting over this issue. I am praying that these visits will open the door to more food that he will eat that does not taste like tin to him. We start next week.

Clinic went well. I now know that both of my boys view that place like a second home. They play with complete comfort and race Little Tike cars down the halls with enthusiasm! That's what Nurse Nancy called their giggles and semi-loud outbursts: "enthusiasm." I was on my way to put them in a chair to calm and quiet them down when nurses met me out in the hall and assured me that they were not bothering anyone. I think I was just overly emotional and wanted to somehow keep the clinic silent and reverent after what I witnessed as soon as the boys and I arrived to our appointment:

It hit too close to home. It grabbed my soul and started to wring it out over a sink full of "WHY?!" I saw her bolt from one of the clinic rooms, and I recognized those eyes in a millisecond. They were hallow sockets of massive shock only brought on when overwhelming pain is heaved unexpectedly unto the human spirit. It was the look of every beautiful thing, thought, memory evaporated in an instant. Those were the eyes of a soul experiencing real hell on earth. I wanted to run to the end of the hall (a close cousin to "hell" in spelling) and throw my arms around this precious mommy whose heart had just collapsed from whatever news she heard behind those doors, but I recognized her animal-like movements in dialing her cell phone. She had to get the news out. She had to feel like by saying it out loud over the phone, she could process, she could plan, she could have more people around her to hold her up because just as her heart felt as though it had failed, her feet were next. I heard a nurse say that the doctor was talking to "the new family" and my fear was confirmed. Another baby was stricken. And that's when an uproar of emotions invaded me and I really wanted to puke: NO mommy should hear that her baby has cancer. I felt myself shaking in absolute rage. Honestly. I don't think I have ever been so completely seething at one thing in my life. At the same time, I wanted to somehow comfort her. I wanted to tell her I knew what it felt like... then I remembered. Upon hearing those words for the first time, I felt like the only human in the universe who could understand my own pain. I walked into the clinic for the first time while Gideon was in the Children's Hospital and looked at the smiling moms and sweet children in the waiting room. In that moment I convinced myself that there was no way that family had been told the same news as I was told. No way would they be smiling. NO way life could just keep going when "cancer" joined the family. Sadly, by the time we were put into our own room to wait for the doctor and left, the new family was gone. Maybe she wasn't a hugger, but I would have wrapped her up so that the hug wasn't a hug, it was life support.

No one wants to join the pediatric cancer family. But once you are one of the 46 families who are given this news every single day of the year, the pain and determination to beat it bonds us all. We have to beat this. I never want to witness this again. Ever. I never want another family to hear those words. C'mon, cure.

Monday, June 27, 2011

JULY 9: Mark your calendars, please!

We took a rainy vacation to Grand Marais, and have returned very relaxed. We may not have been able to hike as much as we wanted, but we mastered how to hang out in our jammies, play games, and make music videos. Gideon only had one day up in Grand Marais when he was vomiting, so, seeeee? The place is healing. And when we returned home, there was our reliable monthly package from Grand Marais, again. They have not stopped sending us care packages since the diagnosis. I love you, Grand Marais people!

Gideon is doing well. He has his tired spots and his achy moments, but the boy's optimism is still so fresh and infectious. I think I forgot how to breathe a few times while I watched him watching Cars 2 in 3D. The way he lets himself guffaw at those funny moments -- oh. He tilts that precious head back and lets his laughter take over his entire being. Yup. Still the same, lovable honey pie.

The steroids start tomorrow, though. So, I am thankful for all of those prior joy jubilees. Tomorrow also brings counts being checked and his IV chemotherapy at the hospital, so we are praying for some good results and that his body responds well to the treatment. Be nice, Vincristine. I heard you are made from a flower blooming in the rainforest. I'd like to picture you as a pretty peony and not as a vicious Venus flytrap. Okay? Okay.

AND NOW... JULY 9: There will be race held in Gideon's honor at the Baer Field Speedway. Anyone near Fort Wayne, we would love to see you there! The money donated will go straight to CureSearch, the pediatric cancer research organization that is the MOST important charity in my heart. The race itself will be at 7:30 p.m. If you need directions, please click here. If you are able to join us, cheer for the Long/Crago Racing team! One of their cars looks like this:

Yes, I think this car is the best looking, don't you! GO TEAM LONG/CRAGO!!

As you all know, I am passionate about fundraising for childhood cancer research. Please watch this video and see why we need to make more noise about this underfunded endeavor. Join us in the stands as we make noise at the racetrack as we make strides dollar by dollar towards the cure! ***This organization, MAKE SOME NOISE: Pediatric Cancer Research Foundation was started by a real-live childhood cancer fighter, Malcolm. Please click here for more information. THANK YOU!

Sunday, June 12, 2011

A Year Ago Today...

One year ago we were told Gideon has cancer. Part of me still wants to punch something over this reality, pieces of me just needs to sob over everything Gideon and all of us have had to endure, but the largest chunk wants to just saturate myself in a pool of gratitude. When those words first left the doctor's mouth and I fell to the ground sobbing, I will be honest: I thought it was the end for him. I thought this was a death sentence. There were moments when I appeared "strong" to make each coveted Gideon heartbeat resonate as beautifully as possible so that he enjoyed what he had left on this earth. Maybe this is morbid, but then I got to thinking: shouldn't we always live as if it' s our last moment? This perspective did make me more resolute in this pre-cancer existing notion of inhaling each breath deeply. We have a limited amount of time so eat it up! Sometimes in this journey we were just thankful for a millisecond of no tears. But now look. Gideon's alive (flourishing, even), he's fighting, and he's BEATING those cancer sharks. Thank you, GOD! All praise to Him.

I am grateful to have witnessed the way humanity is instinctually beautiful, giving and helpful in times of heartache. If I listed every single way loved ones and strangers have come to our aid this past year, it would take you another whole year to read everything. I am still baffled by the way my staff came to my rescue by donating their sick days, how I didn't cook one meal for a good six months, the way people joined forces to donate blood in Gideon's honor in massive droves, and how people would stop at nothing to bring a smile to our faces (WMU hockey team, friends, mystery SPA donor, bedroom redecorators, neighbors...on and on...)!

I am mostly grateful for the way Gideon is responding to treatment and the way I feel in the deepest part of me that he will beat this and remain in remission once he is six years old. This sense of hope has brought us through every obstacle, and it comes from the Highest of all Power. We know it's not up to us, but we pray and trust continually.

Today is a milestone! Today we glance back in memory of all we have been through, but we also focus our eyes forward. It was the most difficult year of our lives, but I cannot be more amazed by how transforming and purifying human strife is to the soul (if one allows it to do so). I thank God for blessing me with two amazing sons who have accepted their new role in life with more grace and bravery than I would have thought was humanly possible. I am humbled to be their mommy.

ONE YEAR DOWN, two and a half to go! You can do it, Gideon! Love you, little goblin!
P.S. I put together a video of video snippets from the entire year (only the good parts...). It can't be uploaded here or on Youtube, so I posted it on Facebook. It is available for all to see here. Go to my photos/videos and you can play it there.

Saturday, June 11, 2011

Not a Moral Dilemma...A Mom Dilemma

I feel as though I am reborn after the steroids wear off. I feel like I can think without wanting to cry buckets. So, here I am: relieved and sleeping and not refereeing every ten seconds.

I'd say the newest experience that I have never had the opportunity to live presented itself during this past steroid bout. Gideon was NOT feeling well, and I'm pretty sure that rain clouds lingered above his head quite a bit. I was told that since the toxicity keeps rising inside of Gideon's little body, things get a little more pronounced in the pain department. But, that's not new news. The new news came when I could see a sliver of the Gideon glimmer in those baby blues. He wanted to go with me to the grocery store! I inhaled that noodle of normalcy and grabbed the keys.

(I need to preface the story, mid-story: Every time we go grocery shopping I tell the boys we will leave immediately if they act or say something inappropriate. I mean, leave the full cart and march out of there. You wouldn't think this is a threat since I can't understand why they would want to stay at the grocery store, but it works every single time. It might be because we sing to the lobster or choose our snacks based on the packaging, I don't know. It's an adventure for them at this point in their lives, and they DON'T want to be forced to do the mommy-stomp-out-of-here walk of shame....Maybe that's it, the threat of embarrassment. I digress...again...)

So, around aisle 12, Gideon had the strangest expression on his face. We were passing something that was more poignant in scent, so maybe that is what triggered it, but he leaned over the side of the cart and threw up. A lot. Here's where it got interesting: Brody, my weak-stomached honey, saw the puke and ALSO puked on top of Gideon's puke. I know. This is probably difficult to believe. I was a little stunned myself. While Brody's addition wasn't as hearty as Gideon's original load, I was panicked. Panicked and exhausted mom who saw the faces of other patrons all around and JUST DIDN'T WANT ANYONE ELSE TO ADD TO THE PILE!! So, what did I do? I ran behind the meat counter to the employee-only sink and ripped open the paper towel dispenser, wet some towels and took the rest dry to the scene of the crime. I got down on all fours and began scrubbing up the puke. I ran, puke to trash can, trash can to puke, until there was only a smear left. I then alerted an employee to disinfect. Once I finished washing my hands in the employee only sink behind the meat counter (funny how no one says anything to a wild-eyed and crazy-faced mom muttering to herself under her breath), I pretended nothing was out of the norm and pushed the cart holding Gideon and guided a bewildered Brody to the not-so-crowded organic section.

"We need to go, guys," is what I said as I began lifting Gideon out of his little seat. Since we were in aisle 12, we had quite the load in the basket already. I was going to leave it all (sorry, employees for using all of your paper towel, soap and now leaving you with an hour of re-shelving...).

I froze as I saw Gideon's little lip quiver and he began to cry, "Mommy! I'm sorry! Please don't make me leave. I'm all better and I won't do it again! I promise!" Rip that heart, baby boy. I realized that if I left, it would seem to Gideon like it was because he did something wrong. He didn't!

"Are you sure your tummy is okay?" I asked, "I don't want to keep shopping if you feel yucky!"

"It's all out, mommy! I'm okay. Please! Can we stay?" Gideon begged and Brody chimed in with agreeing whines. So, judge as you will, but I made the mom decision to keep on shopping. Sure, witnesses to the Puke Apocalypse kind of gave me weird looks as we continued to shop as if nothing ever happened. The old Amanda would have wanted to tell them, "It was puke from his medication. He's not sick, I promise!" But, I realized I didn't care what they thought. OH MY GOSH! I'm growing up....

So, we got a lot on that trip. Mommy no longer cares what people think and we have food in the fridge. Win-win. Oh! And no re-shelving for those paper-towel-less employees. All is right with the world.

Saturday, June 4, 2011

Don't Cry, Baby.

The medication hits Gideon harder and faster than ever. At the first steroid, his body just immediately resumed the steroid monster persona. He has been so very sore and needing cuddles lately. Also, he just acts far away and not really here in the moment. I feel like the spinal, vincristine, and the steroids combination is a dazzling off switch for his eyes. He'll tell me certain parts of his body are on fire and he cries in moans, but then that is followed by an extreme jolt of anger! He'll be sad and wet-toweled in my arms, and then he'll thrust his head against mine in a crashing head butt. And then there is the realization of what he did and the tears just start flowing and he is so brokenhearted. Then he needs more cuddles of reassurance and sobs hysterically if I try to move to the kitchen to do the dishes, even five minutes after the cuddling love...It's never enough time for him.

We have found our solution! Every single time Gideon does something he is not proud of, or every single time he is in pain, we put on this song and slow dance. Once the song is over and he has sung along in whispers on my shoulder (my GOSH, I love that wispy feeling...feather breaths in tune with the song...mmmm), I can put him down and he is normal for a little while. It's the perfect healing combination: physical proximity, comforting words and fun, slow twirling. So, I must say, we have listened to and danced to this song at least twelve times yesterday... And bedtime preparation took a long time last night since Gideon threw Brody off of his tooth-brushing stool and I had to slow dance with both of them in my arms after that one, since there was a wicked almost-toothbrush sword fight in retaliation (at least Brody acted more like a knight than a monster)...

I am okay with the fact that this may cause my children to spontaneously dance during stressful situations. It could be worse, right?

Thursday, June 2, 2011

I AM Bobbette Ross.

"...And we'll all float on okaaaay. And we'll float on okay." This song has been playing in my head over and over and over since I woke up. I think maybe I was thinking about Gideon's floating hospital medication he was about to have, had, and then felt the effects of for awhile after. So, that chorus has been stampeding every other thought dancing in my noggin today.

Gideon hopped into that hospital bed like he was strapping in for a carnival ride this morning. He immediately asked for his "delicious air," aka oxygen tube in his nose. He told me it feels like the wind at the beach. He really did. After he got his port accessed, he kept saying, "I'M READY FOR MY SLEEPY MEDICINE!" And he was. His little eyes danced with excitement and he was grinning in anticipation. I never-ever-ever am ready for the sleepy medicine. I am never ready to watch his spinal fluid drip-drip-drip into test tubes. Whenever the tubes need to be traded and a drop goes unused onto the sheet, I cringe and blink my eyes shut to block out the wasted drip of precious Gideon rain. I want to cup my hands and collect this fluid like it is the one last drip of holy water left to purify the world. I feel like a crazy person when I notice this about my thought process, but it's there.

I must say: NURSE MICHELLE NEEDS TO GET ON STAGE! Hear that, Nurse Michelle?! You have a gorgeous voice! Gideon, I think, was digging being your backup singer as you serenaded him to sleep once the sedation process began. I found myself listening to her and getting carried away with her tune instead of watching the needle as it found its way into the base of Gideon's back. I think maybe she was singing for me even more than Gideon. It was my own version of soundwave medicine.

Once Gideon was knocked out, and the procedure was finished, I had to find a new way to get him to LAY FLAT! So, I got out his drawing book and we made these smiley-face sticker guys, as seen above. Gideon told me what to draw and in what color, and I doodled upside down so that he had the full view of my drawing in action. I felt like Bob Ross as I described every crayon stroke in a quiet, om-like voice that would keep medicated-crazy-eyed Gideon calm. "See how I am coloring the hat red, Gideon? I will just shade it in niiiiiice and slooooooow. I hope it turns out how you want it." We even made a happy rainbow. He wanted to be a rockstar with blue hair, and I couldn't blame him, so there he is: a yellow-faced (not from jaundice, just from being sunny), blue-haired hero.
(TANGENT: Did you know I've always wanted blue hair? Yes, I think this obsession began when Barbie and the Rockers came out and one of the back-up singers, Dana, I think, had a big blue puff in her hair and I wished her entire hair was blue, too. I have been dreaming of it ever since.) Gideon is his mommy's boy, that's for sure!

We started steroids today, and his numbers were good enough that we were able to STRENGTHEN his chemo. I am choosing to think of this as an accomplishment and not in the sense of more toxicity in his body. Cancer, be gone! "We'll all float on okay..... Sometimes life is okay... Good news is on the way!"