Neptune Festival

I asked Ian this morning as we were snuggled in bed if he wanted to go to the Neptune Festival this weekend. I started describing that it’s on the oceanfront and there are little shops …

“Oh, I thought it was about Neptune and there would be a bunch of giant telescopes.”
“Well, that would be an awesome festival too.”

We then discussed that Neptune is a (pause while I thought about it …) Roman god. I told him that the Greeks and the Romans –
“Who are the Greeks and the Romans?”
He had no context. They could have been sports teams for all he knew. So we talked about how people from France are called French. And people from Mexico are called Mexicans. So people from Greece are called Greeks and people from Rome are called Romans. But a long time ago there were civilizations.

“Do you know what a civilization is?”
“Yeah, like Egypt?”

So then we went through civilizations and how they have government and cities and cultures and religions. And some civilizations believe in one god and some civilizations believe in lots of gods.

“Like the bible. The only two things I remember about the bible are Adam and Eve were the first two people and that Jesus died for us. Do you know some people don’t believe in Jesus? But I watched a Youtube video about people who died and came back to life and this one lady said she went to heaven and saw Jesus.”

“Ok! So! Back to Neptune. He was the Roman god of the sea. And there’s a big statue of him down at the oceanfront. And we’ll look at sand sculptures and eat funnel cake and look at jewelry.”
“Is jewelry expensive?”
“Some is and some isn’t.”
“I would like to buy a ring please at the Neptune Festival.”
“We can totally do that.”

All of this before 7am. I’m tuckered and yet totally enamored with him.

First day of first grade

Ian and I went for his “meet the teacher” session last week. He was excited to see his new classroom, see some kids, and meet his new teacher Ms. Boutwell (as in about well). The teacher talked a lot about reading and how if my kid doesn’t know how to read now he will by the end of the year. Ian and I kind of just looked at each other because he’s currently reading Harry Potter and the Sorcerer’s Stone – slowly, but with great accuracy.

Ian’s schedule this year is:

8:55-9:05 Announcements
9:05-11:00 Shared reading and guided reading groups
11:00-11:45 Writing and Calendar Math
11:45-12:35 Lunch and Recess (lunch is 11:50-12:20)
12:40-1:40 Math
1:40-2:10 Science and Social Studies
2:10-2:55 Resource (Art, Music, PE twice a week)
3:00-3:15 D.E.A.R (Drop everything and read) and Dismissal

My kid gets 15 minutes for recess (12:20-12:35pm) every day and twice a week he gets P.E. for 45 minutes. Otherwise he’s sitting and learning. I’m a grown up and that day looks taxing to me. Thankfully, when he gets to Jenna’s in the afternoon, she throws them outside, but it’s still rough. I don’t see Ian until 5:30pm. With no naps at school, he is exhausted by 7:30pm and asleep by 8:30pm at the latest. He’s up between 6:30 and 7am every morning.

I offered to take him to school this morning because he had two large bags of supplies for the classroom in addition to his backpack. I wanted to take his picture in front of the house but he suddenly looked unhappy. He told me his smile was awful. This was after he suddenly felt sick at the breakfast table and was slow to get out of bed this morning despite popping awake at 6am all summer.

I told him he looks great and I love his smile. It looks a lot like mine in that you can tell we’re happy if our eyes disappear behind our cheeks. I asked him if he was nervous about school. He nodded yes.

“But Mom, they’re going to have hard math!”

I assured him that he was brilliant and that the math would not be too hard for him. I told him no one was attacking him for how he feels and it’s perfectly normal to be nervous about starting something new. “It happens to me all the time and I’m a grown up. But all the chemicals that make you excited and scared are basically the same. So take it as a good sign that you’re body is working just fine and go for it. You’ll do great.”

He smiled a little and climbed into the Jeep. We drove the 3/4 mile to school with his leg hanging out, his eyes closed in the wind, his shaggy hair blowing all over. (He wants to grow his hair long like his new friend Kieran, so no back to school haircut this year.) I pulled up to the school, handed him his bags and called out “I love you!” to him.

I hope the school rested up all summer so they are ready for him. He’s a lot of kid but worth it.

First day of first grade

Life in the passenger seat

The first day I brought the Jeep home, I asked Ian if he wanted to go for a ride with the doors off. He immediately burst into tears and ran to the safety of his room. As far as he was concerned, that monster was a 4″ lifted carriage of Satan.

My kid is a sensitive soul, much like his mother. There are a lot of things that make him nervous and upset these days. I get that. There’s a lot of stuff out of his control. It’s hard being six.

A few days later we were going to get dinner. I asked if he wanted to take the Element or the Jeep. He adamantly requested the Element. Fair enough.

Last night, I asked Ian if he wanted to get a milkshake from Sonic after dinner. He wanted the shake but didn’t want to leave the house. I reminded him that I’m not a dessert delivery service, so if he wanted a milkshake, he was gonna have to come with me. That led to some consternation and a bit of a delicious stand off. Whatever, dude.

Around 8:30pm, I told Ian he needed to take a shower. I honestly can’t remember the last time he had gotten clean by anything other than the backyard hose, so it was getting bad. He agreed but then said he had decided he would like to get a milkshake.

“It’s probably too late now, though.”
“If you shower and manage to keep the milkshake out of your hair, I’m agreeable to that.”

Fastest. Shower. Ever.

As we walked out into the muggy night air, I asked again casually, “Do you want to take the Jeep?”

“But … I’ll have to ride in the front!”
“Yeah …”
“But! I’ve never ridden in the front before!”
(internally debates risk of airbag on 82lb kid) “You’ll be fine.”

And with that he was sprinting towards the Jeep.

I had put the doors on for the 20 minutes of storms we had earlier that day. As I opened the driver door and took the top half of the door off, Ian blurted out, “Mommy! What are you doing?!”

“I’m taking the door tops off.”
“I’m already in the front and now you’re gonna have me fall out?!”
“Jesus, dude. You have a seatbelt.”

He opened his door and climbed up in. I took the door tops off and set them in the driveway. Ian reminded me to not run over them as part of his safety protocols.

I put the Jeep in reverse to back out of the driveway and he started squealing with delight! I drove really slowly in front of the neighbors’ houses just in case the kids were up and happened to look out the window to see Ian RIDING IN THE FRONT SEAT!

Most of the way to Sonic, Ian was content to hold his blankie (corner firmly pinched between thumb and index finger), rest his right arm on the door, suck his thumb, and stare out the window. His freshly washed hair tussled in the warm breeze and he looked content. I tried to take his picture because it made me so happy but it was too dark.

We took the back road so there were lots of stop signs. This was Ian’s first experience with a stick shift as well, so there were lots of questions about clutches and gears and if my hand had to stay on the stick for it to run or if it was just a place to put it.

We parked at Sonic and Ian posed for a picture. It only marginally describes his level of stoked about sitting in the front seat.

Stoked about riding in the front seat

As we drove home, he alternated between sipping his milkshake and hanging his head out the door like a labrador (because really there is no window but more a missing section of door). He said it was the best thing ever.

“Mommy, it feels like we’re going so fast!”
“Dude, we’re going 35. But open air is like that.”
“Can you see the moon? It’s so bright!”
“I can’t see it from my seat.”
“It’s right here!” (points to a spot in the roof)
“You know, we can take the top off of this too. So you could see the stars and everything.”

If you were listening very closely at 9:10pm last night in our little corner of Ocean View, you would have heard Ian’s mind explode.

Two weeks ago he was terrified of a car. As of last night, he’s hooked on the front seat, topless life. Kids are like that. He may not get to drive for many aspects of his life. But that doesn’t stop him from living in the moment, hanging his head out with the wind on his tongue.

Hanging his head out the window like a labrador


appendix book joke

Several people have asked how Rich is doing and how his trip to Nashville went this week. I wish I could tell you that we had some sort of revelation, but it was a lot of the same.

He got up at 3:30am so he could get on a flight at 5:35am to Atlanta for his plane to get replaced and arrive in Nashville late. He hustled to his appointment to find out that he’s lost 15 pounds in the last month from not eating. He talked with the nurse practitioner Holly because Dr. Bendell wasn’t in the office that day. Holly had no answers for Rich and her hypotheses were odd at best.

He delivered the Excel sheet and list of questions I had created so that Dr. Bendell could reply to me via email. He got his Benadryl. He got his immunotherapy treatment. He took an Uber back to the airport. He landed at 11:30pm. Long day.

In an attempt to make sense of the last few weeks I had created a spreadsheet of each day, Rich’s food intake, oxycodone intake, fever, hiccups, larynx spasms, bowel movements, and overall health. I then had a list of questions for Dr. Bendell that included things like

  • Why did the hospital give Rich antibiotics if his white blood cell count (WBC) wasn’t high? Were they just throwing things at him and guessing?
  • How did Rich have diarrhea after taking 12 oxycodone for two days in a row? He shouldn’t poop for a month after that.
  • If the antibiotics were pointless, what actually made him better in the hospital?
  • What do we do the next time he doesn’t eat for a week?

Dr. Bendell’s answers were brief but informative. She believes (and I concur) that Rich had another obstruction. It made his large bowels not work properly so that only liquid could get past the blockage. It also inhibited the large bowels from doing their job of removing water. She agreed that the hospital had no idea what to do with Rich so they just gave him an assload of antibiotics just in case it helped but there was no real reason for it. And even with 12 oxycodone a day, you can still have liquid bowel movements if that’s all that can get through your bowels and if they’re not working properly. He got better simply from being rehydrated and resting his bowels by not eating. And if he gets to a point he can’t eat again, we could explore TPN again or see if he recovers enough to start eating again like he has now.

The pattern, as much as there is one, is that Rich has had obstructions every 4-6 weeks. Late July, late August, and mid-October. So the plan now, as much as there is one, is to get as much weight back on Rich as possible so that the next obstruction that keeps him from eating won’t make him even skinnier or malnourished.

There is no “aha” moment that explains everything, but it does make sense. And there is no magic bullet. We just keep getting immunotherapy treatment, keep eating and drinking, and do our best. We will continue to hit obstructions along the way but we will keep finding ways around them.

Rich recap

I’m merely trying to recap the adventure of our last two weeks. Bear with me.

A few days before War of the Wings (Oct 16-18), Rich started getting fevers in the evening. This is not totally out of the ordinary in that it’s a side effect of chemotherapy, immunotherapy or any sort of stress on your body. His temp would climb to about 100 around 6pm and go back down to normal by 10pm without any meds.

Friday, we drove to War in North Carolina. He was feeling ok. He and I had a disagreement Saturday morning which led to him being a little moody. He didn’t eat breakfast or lunch. I figured he would rally eventually. He then decided to fight in the woods battle. While he fared okay out there, he curled up in a sunbeam in camp afterwards and wouldn’t move. His whole body was cramping.

He managed to make it to great court and sit in a throne for a couple of hours. I went back to camp to pack up, jump our car battery (of course), empty our hotel room, and come back to site. Court was over at 7pm and we were on the road home by 8pm. Rich slept the entire way home having eaten only an egg roll and half a protein bar. We got home at 1:30am.

Sunday he slept all day. Monday through Thursday, he slept all day. My parents came to keep everyone alive in the house as I had a business trip. His hiccups started on Tuesday. Thursday evening, he rallied enough to go to Ian’s birthday party but was exhausted. Friday he slept all day.

Saturday we had to go to Baronial Birthday so that we could step down as baron and baroness. We literally had to be on site for only two hours. I packed everything up, and got him in the car. We arrived at the site and Rich curled up in the corner. I got garb on him literally minutes before court started.

Prepping for court

We had our final court, he rallied for about an hour. We stepped down and Rich got his court baron award. I got kitty supporters which I adore. Rich went immediately back to the royal room to sleep on the floor. I packed up the car and drove him back home where he went back to bed.

Sunday our house guests went on their way and I told Ian I would take him to a movie. I was unwilling to leave Rich unattended so my mother came over to babysit. In the three hours we were gone, Rich had six bowel movements. He was worried and very dehydrated, so we headed to the hospital.

When we got to the hospital I explained we were there for dehydration and hiccups. They couldn’t help us with anything else. They asked for an overview of Rich’s issues and I tried to give the most efficient version possible. They decided to give him antibiotics for a possible abscess, though his white count was not high. It took two days to rehydrate him.

They didn’t have injectable or IV Thorazine in the hospital, so we still haven’t cured his hiccups. The Thorazine pills will slow them down and at least help him sleep, but they don’t fix it.

The pressure on his belly, makes it so his lower fistula has started increasing output. And it makes it hard to take deep breaths. And the hiccups make it hard to sleep or breath well.

We stayed in the hospital from Sunday evening until Wednesday afternoon. Just in time to pick up our sick kid from the school on the way home from the hospital. Rich is home now and eating again. But I’m staying vigilant to make sure he doesn’t get dehydrated again.

Meanwhile, Rich has started having larynx spasms. They are not life threatening but are terrifying. His epiglottis slams shut and he can’t breath or speak for about 20 seconds. We have no explanation for that other than possibly the hiccups are sparking it or the acid reflux. There is no treatment other than to hold your breath and not panic. Easier said than done.

We are due to go to Nashville next Wednesday. He’s behind on his treatment because he hasn’t been able to walk, let alone get on a plane.

So the current status is Ian’s fever is gone but he can’t go to school until Friday. Rich is sleeping and I have to harass him to drink fluids, eat, and take his meds. He still has the hiccups. I have finally succumb to a cold, so I’m taking Mucinex every four hours. I’m washing everything in the house.

I keep talking to the lovely ladies in Nashville to keep them appraised of the situation. We’re all still in one piece and alive here.