Friday, November 17, 2017

What Friendship Actually Looks Like

Andrea, Becky, Me, Kayce. Friends are weird together. 
What friendship actually looks like...

Friendship is this word we throw out there casually when it's really one of the most important concepts in the human condition. You can write volumes about what friendship should be, could be, might be, but when you really know and have true friends you recognize it immediately.

Here are some examples:

Friends have common experiences. 
So, in order to come into my house you have to get an active flu shot, right? Well, my friend, Becky, and her daughter, Abby are some of our closest friends. My kids call her Aunt Becky. They went into our local pharmacy and asked to get flu shots. The person behind the counter asked if they were from our school--a local, small private Christian school. When Beck and Abby confirmed, the pharmacist said they only had one shot left because CCA students and staff had been in and depleted the stock in just a few days. That is what friendship looks like.

Becky and Carl who are honorary Aunt and Uncle. 
   Speaking of Aunt Becky and Uncle they are driving two plus hours from home to watch a series of basketball games featuring Naynuh and Carter--Becky and Carl don't have child playing in the games or even in the school right now. They are driving to Columbus, Mississippi to make sure my kids have someone there to cheer and get ice cream after. That is what friendship looks like.

Aunt KK sleeping with Elise while I get prescriptions filled. 
Some friends Elise hasn't been close to in awhile due to logistics and circumstances have come to the house to visit before chemo knowing it would be harder to do so afterwards. It's been surprising who has shown up (and equally surprising who has not).  Friends inconvenience themselves for others.  This is what friendship looks like.

This is my friend, Kayce. She has known my kids since they were babies. She is one of my longest standing heart friends. So, KK came up here so that she could see Elise, bring Sonic, and basically let me run errands in this hospital. I had to go to another building to the pharmacy and pick up meds and meet with someone to explain them to me. I needed to pick up lunch. She sat with E while I did those things, because she loves E and she loves me.  That is what friendship looks like.

While I've been at the hospital, our family friend Martie brought like the entire Sam's sale flyer to my house. Toilet paper, cereal, paper towels, snacks, granola bars, a case of coffee, paper plates and cups, and on and on. I don't know how she even fit all of that into her car. That is what friendship looks like.

Friendship has a lot of faces. I have been blessed beyond all measure with all of the people who have come into my life and stayed when things got real.

There are fifty other people I could put on this list, so if you didn't make the blog it doesn't mean we aren't friends, it means I ran out of time and space.  So many people have offered to help, sent things, shown up to do things, brought food, offered to help with kids and school, and a million other things. Because after your relationship with Christ, how you resolve your interpersonal relationships is probably the most important thing you can learn to manage. I hope that you are a good friend and that you have a friend to lean on when things are hairy. I can't imagine my life without heart friends. I wish you the same.

Charlotte &
the entire Fun Bus


Thursday, November 16, 2017

Fun Bus Detour

Drawn as super heroes in masks and capes.
Because the Fun Bus is still the Fun Bus even while detoured...

We had to cram in five episodes of Stranger Things Season 2 in two days, because we simply couldn't put that on hold over the weekend. Naynuh also threatened us with certain death if we watched it without her at the hospital. We then stayed up half the night finishing the taped episode of Dancing with the Stars the semifinals episode. #priorities

This is known as "planning" in Johnsonville.

We have made more inappropriate jokes in the past week than maybe all year combined. Here are some of the more horrifying examples:

Coping in Johnsonville” aka 
“Quotes after the Crying Stopped”

Elaina: “Let’s rent a movie from Redbox this weekend for when you come home.  I wonder if they have The Fault in our Stars?”
Me: “Or maybe A Walk to Remember?”
Dad: “Or Dying Young with Julia Dogface Roberts.”
Elise: “Y’all can stop being helpful now.” 

Nana: “Been there. Done that. Have the T-Shirt.”

Me: “You realize this is like the biggest ‘get out of jail free’ card ever? You can say anything and then finish with pointing to yourself and saying, ‘cancer’. What are they going to do?”

Steve: “Should we call Make a Wish now or later? We want a good spot on the list.”

Elaina: “Can I have your room? Like you know, if something happens?”

Elise: “So, if I want out of something I can just plead, ‘My nodes are killing me today’.”

Big E: “Does this mean I’m going to die a virgin?”
Carter: “Nah, I know an entire basketball team. Let’s make a list. I'll get the yearbook.” 
Big E: "But like there are only five boys in the senior high on the varsity squad and you are one of them." 
Carter: "I'm not going on the list, E." 
Big E: "CARTER!"
Insert giant eye roll here. 
Elaina: "If it comes down to it there are more senior high players on the GIRLS varsity squad..."
Big E: "ELAINA!"

Elise to Liam: “Liam! This means you have to be my real boyfriend not my fake boyfriend anymore, because if you reject me you’ll be that guy who rejected the girl with cancer. Not cool, Man. Not cool. I wonder who will play you in the movie version.” 
Poor Liam the Fake Boyfriend. He doesn't stand a chance.

Me: “Hey! You might actually get on The Ellen Show now!” 

Elise: “I now get my own trauma story.  I get to be an anecdote! Finally!”

Elaina: “Oh, great. Now I’m going to lose my spot as Grandbear’s favorite.”

Me: “Know how you keep asking to shave your head and I keep saying no? Well…”

Steve: “Nana can now use all of those hats she’s been crocheting for a fund raiser. I vote we call it ‘Hats for Hope’.”

Me: "I think that you should let Lillian draw your eyebrows on every morning according to your mood." 
Big E: "Nah, I'd have to keep calling her back in my room to change them every five seconds." 
Lilly: "I could just draw them on stickers..." 
Insert Long Pause
Big E: "That's actually brilliant." 

Carter: “That bucket list we’ve been making for the last couple of years suddenly means so much more now.”

Me: “So I take it back; driving ISN’T the scariest thing you will do as a teenager. Who knew?”
Steve: “Elise always did like being the center of attention.” 

How do you eat an elephant? One bite at a time. 11-16-17

Accessing the port for the first time.
First day of chemo round one:

We had to be at the hospital at 9:00. Left at same time as the rest of the house left for school. Checked in, weight, height, etc., and then we accessed the port the first time after surgery Monday. It was sore, but she said much easier than the IV. Everyone has been more than informative--patiently explaining all of the procedures. It's been incredibly helpful.

Ready to roll for first chemo. Fashion forward as always. 
Then we went onto the PFT--Pulmonary Function Test. This was to get a baseline measurement of her lung function. This is because some of the medications can cause lung damage, so they need a starting measurement. They put her into this tube that looked like something out of the movie Alien. She participated in a bunch of breathing exercises that all bordered on bizarre. Once we were cleared from those tests, we waited about an hour or so for a room to be made available in the hospital.

Pulmonary function test.

Family room has a freezer full of ice pops. 
Once we were admitted, things went very rapidly. There is a HUGE support team here at Children's, so that means lots of people in your space helping organize all sorts of services. We toured the floor, found the family room (with coffee, fridge, snacks, etc.), met social workers, nurses, shift nurses, new doctors, old doctors, child life specialists, etc. It's overwhelming. Best discovery so far? The family room has an entire deep freeze dedicated to the Freeze Pop. Elise and I both hummed the hallelujah chorus when we opened it. These are her all-time favorite snack item. It was like a little wink and nod from the Man.  She had two before she could get into the bed good.

Medications are delivered one after another over about a five-hour period. They spread them out to monitor allergic reactions, etc.  We add more medications over the next two days and repeat some. We'll also have some training about shots she has to take at home and her medicine regimen once we get to the house. 

People keep ask how we are feeling. Hopeful and tired. Hopeful and tired.
Hooked up and ready for meds. 
That's a lot of business.
Sleepy girl.

Tuesday, November 14, 2017

Because there is Some Serious Humor Here too

So, Elise is a hard stick with the IV and drawing blood from her is a challenge. Even though they put a port in, today she had to have an IV because of the PET scan (the dye can damage the port and/or create false reads on tests). The first time they tried to hit the vein, it didn't work. They dug around in her arm several seconds until abandoning ship. I turned to Elise while the nurse went out of the room to get more supplies and said:

Me: I'm going to pray now that they get it on the first go. Like, WHAM! There it is.
Elise: Okay, fine, but can you do that silently. It freaks people out sometimes.
Me: Sure. I can pray quietly.

So, I sat there behind the nurse, facing E, mouthing my prayer. Specifically, I said to God, "God, let the nurse hit that vein like instantly, perfectly, quickly, the first second she puts the needle in."

I look up and not only did all of that happen, but blood shot clear across the room out of that needle. Like on Elise's clothes, hand, the nurse, the table, the floor. 

Nurse goes out to get cleaning supplies and sterilization stuff.

I pointed at my head and then at the ceiling and wiggled my eyebrows. How you like me now, eh?

Elise: Okay, so maybe you pray a little less powerfully next time.
Me: God, maybe you keep on responding so we can give you all the glory.
Elise: Or that's good too.

Tests. A Testing. Being Tested. 11-14-17

Headed in for the day of testing.
Today was a difficult day. Informative, but difficult. We toured the hospital from 9-5:30 performing every test I've ever heard of and some new ones.

Based on the tests today (without the bone marrow test results which would change things considerably and should be back tomorrow) Elise has Stage II type B (more advanced symptoms) Hodgkin's Lymphoma. It's in three places: the lymph nodes in her neck that we knew about on the right side, some small ones on the opposite side of her neck, and there is a mass on her windpipe/esophagus low near her stomach.

We start chemo Thursday-Saturday of this week at Children's. We will plan on four rounds of treatment. We re-run all of the tests we did today from top to bottom after the end of round two to check progress. Biggest risks of all are from infection inside and outside of the body.

Chemo is a 21 day cycle. It's too confusing to explain, and all you really need to know is that the process will take 4-to-6 months from start to finish if everything goes very well.

With that in mind, if you are going to visit us in the hospital or in the house: 

1.) You CANNOT COME OVER IF YOU HAVE EVEN THE SLIGHTEST CHANCE THAT YOU MIGHT BE SICK OR THAT YOU MIGHT HAVE BEEN EXPOSED TO SOMEONE WHO IS SICK.  I'm not kidding. Not a sniffle. Not a scratchy throat. Nothing. You could kill her. (Also, please don't bring us food of any kind if you are ill or if anyone in your house is ill.)

Flushed from pain meds, etc. 
2.) If you are going to spend any amount of time in my home or near Elise (spend the night, come watch movies) you absolutely HAVE to get a flu shot. NOT the flu mist (you would be bringing active flu spores into our home and exposing her to them). It must be a shot. Close family and friends need to make arrangements by Saturday if you plan to visit next week over the Thanksgiving holiday.

3.) I will absolutely ask you if you have done both of those things before you are allowed to visit. Not kidding. (Anyone who remembers having to scrub up to touch Lillian when she came home from the hospital knows Mama don't play that.)

4.) Elise is going to feel terrible and be very ill during this process. We are basically killing off all of the bad cells and a ton of the good ones too in her treatment. It's taxing. Be sure you make arrangements to visit. She will LOVE to see you, but she has to rest, so we are going to try to group visitors into blocks of time. You are all still welcome in our home to spend the night with the other kids, hang out, watch movies, play basketball and video games, etc., you just have to be healthy, have a flu shot, and be careful not to spread germs through drink sharing, hand washing, etc. We will also have signs up reminding everyone to wash hands and be healthy.

Probably not supposed to be photographing. Don't give a crap. 
Things we are sad about:

1.) She's going to lose her hair. Absolutely, all of it. (#cancerperk: this might include her leg hair)

2.) She won't be able to go back to school full time. She will have to finish the bulk of her senior year at home. First, because there is too much exposure to illness. Second, because she will not have the energy while battling the cancer. (#cancerperk: sleeping late every single day of the school year and getting to watch every Hallmark Christmas Movie like as they debut)

3.) She is mourning the loss of her senior year. (#cancerperk: there are no perks to this one. that is going to stink.)

4.) The treatments have a fairly strong possibility of harming her fertility. (#cancerperk: we are people who firmly believe in adoption. Elise has told us since she was little she was going to adopt. Guess she was right.)
Elise and Elaina senior drape photos. 

Things we are happy about: 

1.) This particular disease has something like a 85-90% cure rate.

2.) This particular disease also has a very low recurrence rate. Once you're done, most people are done.

3.) We are in a hospital with one of the highest cancer cure rates in the developed world.

Because we are Bad to the Bone.
4.)  The school we attend is going to be able to accommodate her schooling needs and she should be able to graduate with her class if everything goes as planned. The clinic we are treated through has a teacher on staff whose whole job is making sure that kids have materials, tutors, classes, online helps to finish their classes. It's amazing. We also think we will be able to Facetime some of the classes. That is sort of exciting. (Situational irony: I said I'd NEVER home school because of one thing--Elise. Irony? I'm now going to have to partially home school her. Well played, God. Well played.)

5.) If everything goes as planned, Elise will be able to make her Senior banquet, graduation, even the play. They said they'd try to make sure she was healthy to attend some special events as we go too. We hope she's finished treatment in 4-to-6 months.  The doctor team said she should progress exactly like she will be able to start college in fall 2018.

So, we are going forth a little happy, a little sad, and a lot shell shocked. We found the lump and saw the doctor three weeks ago. We saw a specialist nine days ago. We've had two surgeries and fifteen tests in five days. We were diagnosed four days ago, staged today, and starting treatment in two days. Literally, our entire lives have been turned upside down in a handful of days. Be patient when we can't speak and don't know what to say or don't want to talk at all.

We love you all and can't express enough how much the calls, texts, cards, notes, gifts, etc., have meant and will mean as we go forth. 

Charlotte &
the Fun Bus


Monday, November 13, 2017

Port Installed. Bionic Woman Status Official. 11-13-17

Rollin' in ready for surgery. 
Surgery to put in the port went well today. No complications. While they had her under anesthesia, they performed two kinds of bone marrow extraction for testing. We should have those results Wednesday.

Tomorrow, we go for lots of different tests--PET scan, CT of her upper body, blood work, heart echo, lung ultrasound, etc. We meet with her team in the afternoon to go over results and make decisions.

As of this second, it appears as though she will check into the hospital Thursday-Sunday for chemo. She will then have a three-week break to recover. Rinse. Repeat.

Warning, the photos aren't for the faint of heart. We are documenting here, not just entertaining. :-)
Made a cancer binder. There are like five million pieces of paper and info to keep up with. I'm fairly intelligent and I'm swimming in data overload.
Random Facts: 
1.) Elise usually watches her weight closely. Like almost obsessively. She's wanted Arby's after every single doctor's visit like she's on the Titanic and it's last call for the dessert tray. I've ordered it for her every time too. Number Six, Medium, with a cherry turnover. She can have two of them if she wants. Amazing how nine days changes your perspective.

2.) Elaina is a boss. Today she took kids to school. Took the dog to school for petting zoo. Helped run a petting zoo with her senior class for the elementary school. Took the siblings and the dog home again. Went back to basketball practice. Brought kids home. Did math homework. Moved laundry. I can't even. Everyone needs a child with a servant's heart in his/her home.

3.) Someone left $100 in an envelope in our mailbox.

4.) Someone also brought us steaks and ground beef. Like enough for the whole fam.

5.) The doctor and nurse said Elise shouldn't eat starch or sugar tonight, but protein. Said that steak and salad would be optimal--something with greens, iron, protein. Wasn't kidding. It's for the PET scan tomorrow. I'm thinking, how I am going to afford that? The rest of my crew is going to be devastated if they have to watch their sister eating steak and salad and they are eating tuna casserole. That sort of thing doesn't breed sibling love. Seriously. (See 3 and 4.) Problem solved by the hands and feet of Jesus People.

6.) I have spectacular videos. You have to be a Fun Bus Member to view. See me later.

7.) Nurses all hugged me on the way out. Surgeon One said, "That kid is so polite. Like unbelievably polite. All of the nurses were going on and on about her." Surgeon Two said, "I can't get over how the nurses and anesthesiology team were enamored of your daughter. Everyone agrees she is like a bright light." Bone Marrow people came from surgery (who didn't have to meet me) just to meet me so they could tell me that Elise was a special young lady. I'm like, someone please check the armband of the kid in recovery. I'm not sure you've got the right one. ;-)

8.) Our new church isn't officially our new church yet and they are already treating us like family. I can't even. It's faith restoring to say the least.

9.) My work is awesome. I ADORE my job--it's not a job. Teaching English is my life work. My passion. My great love. And the people at CCA make it easy to love it. So, so thankful for the love expressed for my family and the ability to care for my baby girl without worrying about my job. Students, I love and miss you and will be back in the classroom as much as possible.

10.) Elise is now the Bionic Woman. Port installed. Let the chemo begin!


(For those who don't know the "Big E" hashtag reference--when Elise and Elaina were little they couldn't say each other's names so Elise called Elaina "Nay-nuh", and Elaina called Elise "Eeese" or "Eee". We started calling Elise "Big E" because she was so much shorter than Elaina and it irked her.

Before the port installation, no meds. 
After port, meds. 

Close up of port site. It looks like a marble shoved into her skin. 

Post op. Wanted to know when we'd get to have Arby's.

port: side view

port: front view

Sunday, November 12, 2017

The Skinny 11-12-17

Elise has been diagnosed with Hodgkin's Lymphoma.

We have surgery again Monday, November 13 to install a port and take a bone marrow sample to test.

We have PET scan, CT scan, X-Ray, blood work, and consultation Tuesday, November 14th.

We begin chemotherapy late this week.

Interesting Observations:

1.) The best message of comfort I have received thus far was from an atheist.  (I'll let that just sit right there for a few.)

2.) You do, in fact, deserve a cape for a cancer diagnosis. (Capes and doughnuts make almost everything better.)

3.) Bringing a girl with cancer Sonic is like better than $1,000.  (Not kidding.) Just showing up is half the battle.

4.) Hearing your child has cancer suddenly brings what is important and what doesn't mean jack crap into laser-like focus. I can assure you I don't care what you think about me, my husband, or my kids. I don't care who said what or did what or thinks what. Don't care. At all. Go on with your bad self.

A Brief List of Things I Also Don't Care About Anymore: 
wearing make up. 
leaves on the lawn. 
what's for dinner. 
the interior of my car. 
having 'alone' time. 
if I'm wearing fall or summer clothing or a mixture of both.
dishes in the sink. 
who spilled the drink.
what's on TV.
popcorn being thrown in the living room. (we own a vacuum.) 
how loud the kids are. (wait, I never cared about that one.)  
what your neighbor did to you. 
who you are mad at. 
who is mad at you. 
who is mad at me. 
what my child made on the spelling test.
what your child made on the spelling test.
if there is a spelling test.
what your cancer was like. 
what your best friend's sister's cousin's cancer was like. 
statistics about cancer.
your feelings. 

5.) People who love you show it in practical ways.

6.) God loves me. He totally loves me. What Satan intended for evil will be used to further the Kingdom. God has entrusted us with an amazing burden. He's fully expecting the Johnson Family to Job, and I'm all about proving God right. (Jesus People, give me an 'amen'.)

7.) For people who struggle to graciously receive help, the only way you're getting into the inner sanctum is to insist. Just show up with the food. Don't ask what you can do. They will ALWAYS, ALWAYS say, "nothing."

8.) Elaina, Carter, Lilly, Steve, and Nana all still have lives. Don't forget when you are getting the Big E update to ask how they are doing too.

9.) Warning: I'm not putting on a bra if you pop in at my house. (If you call first it's still a 50/50.)

10.) Sometimes you don't have to say or do anything. Just being there is enough.

11.) People keep asking me how they can help. I don't know what to say. I wish I knew what to say. I should probably make a list of things that I can spew out on cue, but I can't think right now. Ask my best friends. They can probably advise you like a million times better than I can anyway.

So, until I come up with a list, pray like you mean it.

Psalm 46
Psalm 9:9