Controversial Christianity: Keeping It Real

Keeping it real. 

I'm going to say something controversial here now, so hang on for a second.

When E was asking why she got this disease and how unfair it seems in the light of all the excitement already surrounding our lives lately, I reminded her of the more obvious Scriptures like 'the rain falls on the just and the unjust'. Sometimes things just happen and instead of asking 'why me' we should usually ask 'why not me'.

This is the controversial part: sometimes a thing like this has nothing at all to do with the person. It has to do with things in the greater schemata. The Big Picture.

Being a Jesus person doesn't mean being nice all of the time.
It means being real all of the time. Sometimes the truth
isn't nice. But it's important.

I have this saying--if you've been around me five seconds you've heard me say it. Any time something goes in my favor I say, "God loves me" and smile. But if you've been around me lots and lots of time, you know that when things go really wrong, I point at myself and say, "God loves me" then too. Because He does.

And I really, truly, completely believe when the Scripture says, "All things work together for good to those who love the Lord and are called according to His purpose." I believe that even this diagnosis has a higher purpose in His plan for Elise, His plan for our family, and maybe even His plan for you if you are connected to us in some way.

Johnson Motto: Laugh at everyone
all of the time. Especially yourself.

I told E that she's been given this amazing platform. She can encourage thousands of people she never would have had access to without this illness. She's going to meet and influence people in all corners of this hospital. She is going to be able to share and learn and use things she didn't understand before. She is going to have her faith tested.

I also told her she doesn't have to respond any way she doesn't feel is sincere. So, if she's angry, she's allowed to be angry. If she's sad, she's allowed to be sad. If she doesn't want to talk to a person, she doesn't have to. If she wants visitors to leave, they can find the door. Having cancer has already been incredibly freeing. She can literally respond how she really feels as opposed to a sugar-coated, false front put on show. We are already the most real people I know--but this? This is different. It's powerful. It's freeing. It's being able to tell people what you really think and knowing that they are listening. These things don't make you bad or good--they make you authentic or not.

The public you and the private you need to look the same. 

So, for the first time ever in my history parenting, my child received a text message apology, and she wanted to respond in a rude way. I asked if she really, truly felt the thing she typed (before she sent she asked me what I thought and if she had permission to send). She confirmed. She never wanted to hear from that person again after what they did to her.

She said this, "My illness doesn't give everyone who has wronged me to come back and try to make right. It's selfish and makes my situation revolve around their guilt. It's ugly. If they didn't want to contact me to apologize to me before then this will be the best reaping and sowing lesson ever."

Normally, the (former) pastor's wife mom in me would say, "But God tells us to forgive and not let a root of bitterness grow..." spewing truths but not real emotions.

Being real means being real especially when people are watching. 

This time? I looked at her and said, "If that is how you really, honestly feel, hit the send button."

And she did.

And I think I'll do the same when the time comes. Because your life is but a vapor and sometimes you need to say the truth to someone in love while you still can. God will still love me when I do. I wish the same for you.

11-18-17 Because Sometimes You Get the Short Straw

Morning meds, breakfast

Had a good Friday and Saturday in the hospital. While we are eager to go home, there is so much information that is new and overwhelming and even a little frightening.

Here's a new one: if she runs a fever of 100.5 or more it's an emergency. If she runs a fever of 101, get in the car and drive straight to an emergency room. I bought like a NASA-approved thermometer. I might be able to take her temperature from the next room. (That's freaking me out, since I'm a "rub some dirt on it" mom.)

The food has been good here, she just hasn't really felt like eating it. (I have never in my life understood bringing someone who is nauseated sausage and eggs. Like really?)

The last strawberry yogurt! Whoot! 

They have a really good little sandwich shop on second floor where I've bought her snacks and made-to-order meals. Last night she got a turkey and Swiss and ate a little less than half at 9:00 p.m. We counted that a victory since that's all she'd eaten since morning. And this morning she wanted yogurt. Lucky for her, there was exactly one strawberry yogurt in the case. (God loves us.)

If things go well, we should roll by late afternoon/early evening.

Chaplain came by Friday afternoon and had a really long, lovely conversation with E. Pulled up the chair and stayed in the still just letting her talk about what is happening to her. That was revealing and beautiful. It made me beyond proud to hear her tell the man that she knows who she is, what she believes, and that she's comfortable admitting she doesn't know how she feels sometimes and isn't afraid to express her true feelings when she figures it out. She said some interesting things that I am sure will become a longer, more detailed post at some point when she gets ready to share.

One thing that really stood out (that I have permission to share) is that she is thankful that out of everyone in our house it was her. She said she didn't want it to be Carter, because it would steal basketball from him and the season has just begun. She got to finish volleyball season and even go to the all-star team at the end which was a great honor and she got to finish well. So, better her than Carter.

She didn't want it to be Lilly because she's had enough hospital time to last her whole life and wouldn't understand everything happening to her. So, better her than Lilly.

She said she didn't think Elaina physically or emotionally could handle it because of how tender-hearted she is. E also added that Elaina is uniquely suited to taking care of the other people in the house much better than Elise could if the roles were reversed. So, better her than Elaina.

\Deli sandwich at 9:00 p.m.

She said Nana isn't as young as the first time she faced cancer and wouldn't have near the odds we have now. So, better her than Nana.

She said, "Daddy, well the elbow explains why not Daddy." (I laughed out loud listening to her tell the chaplain that one.) So, better her than Steve.

And me? I chimed in that I would rather it be me a thousand times over. She shook her head, serious, studied, and said, "No, never you. Because the entire house, the school, the world would stop turning if this were you." (Perhaps one of the greatest compliments of my life.) (Not true, but I was honored to hear that she feels that way.)

Elise thinks she is the best person to face this battle.  She is the one best equipped to manage this present trial.

We thank everyone for the cards, gifts, texts, phone calls, donations, Facetime calls, emails, smoke signals, visits, and on and on. I've thought a thousand times I can't imagine going through something like this without a support system. We have so many wonderful people in our lives that it's overwhelming and humbling.

I thank God for all of you!

The Big Window at the end of the hall, 8th floor. 

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 Carl...today 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

#BigEkickingtheBigC
#funbus
#funbusdetour
#5shorties
#andstillirise

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.

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. 

Love,
Charlotte &
the Fun Bus

#BigEkickingtheBigC
#funbusdetour
#stillthefunbus
#5shorties
#andstillirise
#gangsterstrong