Yesterday was such a great day! Busy, but great. We had our Lab Clinic day to get everything ready for Chemo today. He got his blood drawn, had a urinalysis, and met with Sue. His numbers were really great, but he's lost weight since last week. I was stunned to hear this! He's been getting his feeding tube at a higher rate almost every day. I noticed that he didn't complain once when I had accidentally raised the dose, so I kept doing it to help him gain a little faster. It was all in vain. I will meet with the nutrition specialist to find a better alternative to help him gain that weight. He's still at the 1% on the growth scale, so I'm hoping to get it raised before round three. Here's to 5,000 calories a day for a while. We were sent on our way without having to have a blood infusion. This is always good news. We came home and took a LONG nap. It was a great morning!
Dinner that night was at Maggiano's with Brennon and Leah. I LOVE having Brennon so close! As a side note, I can't stand Seattle traffic. It makes me nervous to remember all of the stop-and-go we had to go through. Yikes, not my favorite. We got seated in our booth, ordered our food, Leah and I talked baby (she's due in 14 days now) while Randy and Brennon talked work, when the manager walked up to talk to Caden. He leaned over the back of his seat and simply said, "Hey, how ya feeling? What are you eating?" like he'd known Caden for years. Caden has been in the mood for Nerds and Cream Soda, so he had his bowl of Nerds out. The Manager said, "I can do better. Let me see what I can find." Keep in mind this is a seriously nice restaurant! Next thing we know, he comes over with a plate of Hi-Chew's, a bag of Starburst Jelly Beans, a complimentary ticket to Carmike, and two unlimited cards to the Arcade upstairs. He fist-bumped Caden and told him to holler if there was anything else that he needed. I was in shock. Jelly Beans in a seriously nice restaurant? I don't think so! This guy had gone "shopping" to find Caden these gifts. We had our seriously excellent dinner and got another gift from this Manager. He had gifted us our meal! I am in awe at the generosity that is continually shown for my son! We have had packages sent this week from his Middle School, his previous baseball coach, friends, neighbors, White Bluffs, and random strangers- and of course, Brian Regan. :) It brings me to tears at how spoiled we are with such wonderful people all around us. I can never say it enough, will never say it enough- THANK YOU!!!
With unlimited tickets in hand, we headed upstairs for a night of games. Never in my wildest dreams could I think it would turn out as fun as it did! I'll start with my favorite event of the evening and work my way down to just the fun stuff. So, you know those games where you guide the claw around, have it drop down, and hope to get a toy? The games that you NEVER see anyone win, no matter how many chances they get? Well, Caden won SEVEN times last night! That is no typo- SEVEN! It reminds me of the time Caden got 4 Yahtzee's in one game. This kid is lucky!! At games, at least. At one point of our screams of surprise, two girls and two guys came to join our excitement. There were high-fives and fist-bumps all around for my son. He was being praised by family and stranger alike. He said he felt "popular" with all of the attention he was getting from the girls. It was so magical to see his face light up; not at winning, but by having two cute girls recognize him. My next favorite event was Air Hockey. He was able to stand and play Randy or Brennon for about 30 minutes. It was the most energy he's expended since January 31st. It was fun just watching him stand. And "win" Brennon! (*Cough*) And last, it was fun just watching him do all of the driving video games, one of which was a ride as well. If they hit something on screen, they felt it. It was an amazing night!
And then we made it home. As soon as we got into our room he was asking for his bean. I should have thought to bring some break-through nausea medicine for the drive. He was able to hold it back for a while, but ultimately was wracked hard enough to dislodge his feeding tube. Just that morning I'd talked to Sue about this very issue. In some of the paperwork it said that they needed to be replaced every six weeks. With the procedure etched into our memory, this was causing me some serious anxiety. She put my fears at ease by saying that they did plenty of mean things, but taking out a feeding tube and replacing it was not one of them. I was SO happy. And just like that (on the exact day I was relieved) it comes out. Usually, I'd need to go in and have it placed again, but they said it was alright to just wait until this morning. Between the first of this post and now it was placed. And I think this time was worse than last. It is just awful watching it. He gags, coughs, and cries as it's being placed. And then comes more throwing up. And more. I'm not sure how I was able to keep my own stomach calm. I was gagging a few time myself, wishing I could be the one actually throwing up. We knew what was coming, but it was still just so.dang.hard! The nurse told us that placing the tube is the hardest thing she has to do to patients. I believe her! However, I think it's harder as a mom to watch it being done to your child. I seriously hope this doesn't have to be done again. Oh the irony- the day she said they wouldn't need to replace it is the day it comes out on it's own. Chemo is starting at 11:30. And we have the whole day to just relax. It's weird to think that Chemo seems easier than placing a feeding tube. It only takes 30 seconds to place the tube, and hours/days for Chemo, but I'd much rather take the Chemo right now! I'm pretty sure Caden would agree!! Round Two begins in 30 minutes. I'm buckling my seat belt and hoping for the best!!
-5:00 PM Update-
If the rest of the treatment goes as well as today, I'm going to be a happy woman! Caden stayed awake for the entire morning and watched cartoons. Apart from throwing up during the feeding tube nightmare, he's not thrown up once. He's not even felt nauseated! He asked if he could take a bath and I told him that he could after about 3:15. We were both shocked to see it was already 2:00! He stayed awake until about 4:00 before finally falling asleep. Sue told him yesterday that with all of the medicine to keep him from getting so sick he'd probably sleep away the next three days. Knowing he'd be getting the feeding tube, I actually asked them to raise the dose of the first one so that he would be pretty sleepy, hoping that he'd forget about the placement of the tube- like last time. No such luck. He made the comment that he'd never forget that! I'm not sure what made him so loopy last time, but this time he's had no such effects. It's been a great day!! If the rest could just follow suit, this next few weeks will fly by better than I could have hoped! No bumps in our road today. And for this, my dreams are coming true!
I was asked today where our family moto of 'Come What May ~ And Love it' came from. In October 2008, Elder Joseph B. Wirthlin gave a talk in General Conference that struck me to my very core. (Go Here to read the talk.) The main theme is this: "The way we react to adversity can be a major factor in how happy and successful we can be in life." He gave examples through his life and the struggles that he faced, but how his mother always said he should "love it." Elder Wirthlin said, "If we approach adversities wisely, our hardest times can be times of great growth, which in turn can lead toward times of greatest happiness." Throughout our lives we will be given challenges. Our Savior was given challenges, so will we. We were sent to this earth to be tried and tested. I know challenges will come my way, I want to endure them well. But in October 2008, I made the choice to endure them with happiness. There aren't many things to be laughing at right now, but there are things to be happy about. I am reminded of one of my favorite quotes from Marjorie Hinckley:
"I don't want to drive up to the pearly gates in a shiny sports car, wearing beautifully tailored clothes, my hair expertly coiffed w/perfect manicured fingernails. I want to drive in a station wagon that has mud on the wheels from taking kids to scout camp, a little dirt under my fingernails from helping to weed another’s garden, sticky kisses on my cheeks from my children, & the tears of a friend on my shoulder. I want the Lord to know I was really here & that I really lived."
And I want a smile to be on my face and heart.
-5:00 PM Update-
If the rest of the treatment goes as well as today, I'm going to be a happy woman! Caden stayed awake for the entire morning and watched cartoons. Apart from throwing up during the feeding tube nightmare, he's not thrown up once. He's not even felt nauseated! He asked if he could take a bath and I told him that he could after about 3:15. We were both shocked to see it was already 2:00! He stayed awake until about 4:00 before finally falling asleep. Sue told him yesterday that with all of the medicine to keep him from getting so sick he'd probably sleep away the next three days. Knowing he'd be getting the feeding tube, I actually asked them to raise the dose of the first one so that he would be pretty sleepy, hoping that he'd forget about the placement of the tube- like last time. No such luck. He made the comment that he'd never forget that! I'm not sure what made him so loopy last time, but this time he's had no such effects. It's been a great day!! If the rest could just follow suit, this next few weeks will fly by better than I could have hoped! No bumps in our road today. And for this, my dreams are coming true!
I was asked today where our family moto of 'Come What May ~ And Love it' came from. In October 2008, Elder Joseph B. Wirthlin gave a talk in General Conference that struck me to my very core. (Go Here to read the talk.) The main theme is this: "The way we react to adversity can be a major factor in how happy and successful we can be in life." He gave examples through his life and the struggles that he faced, but how his mother always said he should "love it." Elder Wirthlin said, "If we approach adversities wisely, our hardest times can be times of great growth, which in turn can lead toward times of greatest happiness." Throughout our lives we will be given challenges. Our Savior was given challenges, so will we. We were sent to this earth to be tried and tested. I know challenges will come my way, I want to endure them well. But in October 2008, I made the choice to endure them with happiness. There aren't many things to be laughing at right now, but there are things to be happy about. I am reminded of one of my favorite quotes from Marjorie Hinckley:
And I want a smile to be on my face and heart.
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