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!

#BigEkickingtheBigC

(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

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
#andstillirise
#gangsterstrong
#eliseisagangster
#djejkickingcancerlikeaboss

11-8-17 Things We've Learned Thus Far

So, yesterday we had a consultation with the team of doctors at Children's Hospital in the hematology/oncology department. We are on track with our testing. They scheduled a biopsy for this morning first thing, so Elise and I loaded up and headed to the hospital.

We will have results in 3-5 business days. I promise I'll keep you posted when I know. Until then, no news is good news.

Here is a list of Things We've Learned Thus Far:

Children's "color tunnel"  

1.) Information Overload is a Real Thing  
Elise has never had surgery before; the learning curve for that is vast. We must have had the same things explained to us 27 times over. They really want to make sure you know what's happening. And since they deal with really young kids a lot, they still speak like it's kindergarten. The third time someone gave us the driving directions and parking directions I could say them verbatim. (Since I am the most directionally challenged person I know, that's like a Festivus Miracle.)

2.) Children's has Awesome Decor
B'ham has this cool place called the Color Tunnel where you drive through this tunnel of LED lights. It's a great place for a photo op.  We've gone up there for snacks and photos several times on Fun Bus outings. So, naturally, we stopped for a photo shoot in the Children's Color Tunnel.

"Fancy pants surgery shorts"

3.) We Have to be the Most Inappropriate People Alive
The photo shoot continued with modeling the "fancy pants" underwear shorts they gave E to wear during surgery. She asked the nurse if her scar was going to make her look more like a pirate or like Tom Cruise in Mission Impossible.  She wanted to know if she got to take the paper fancy pants shorts home. I wanted to know what songs were going to be played during her surgery for the doctors and nurses to operate by, because the wrong songs could influence the entire rotation of the planets. Speaking of music...

4.) Elise Has the Worst Taste in Music. Ever. Really.

"I'm a model." 

She sang from our "surgery support playlist" including "Broken Wings," some Donnie Osmond, songs from the musical Hairspray, Josh Groban,  and Barry Manilow.  Not kidding. Elise has the worst musical taste of any person I know. Maybe that I have ever known. It's startling. But she knows all the words and commits 100%, so I'm still proud. Disturbed, but proud.

https://www.facebook.com/themotherbear/videos/10213564470340409/?l=1231342932403428969

5.) Don't Drunk Text or Dial after Surgery
She called her scar "bitchin". To her classmates. On Facetime. Yup. I snatched that phone up and said, "Elise has to go now. Goodbye! Goodbye!"

6.) Lillian Can Text
Our 13-yr-old texted me for the first time ever in the history of Lilly. She asked how Elise was doing and told me to "keep me in the loop since you tell Elaina stuff but I don't have her in my classes so...". I didn't know the kid could text. It's never happened before. And she showed concern for Elise, which was like another top ten surprise. (And she's working on a gangster/warrior avatar for Elise...stay tuned.)

7.) Everyone Loves Elise

After surgery--like a boss.

The nurses, the anesthesiologists (who Elise--while under the influence--called 'hot' about seven times audibly while he was in the room), the surgeon--every single one of the people she spoke to today adores her from head to toe. Her spirit, her attitude, her humor--she had everyone rolling. The surgeon said, and this is a quote, "I wish all of my patients were this optimistic and bright, shiny people. You are completely blessed to have her as a daughter. I sincerely believe that you are going to be fine based on your attitude alone." I told the surgeon I just thought Elise was too mean to die. (See inappropriate people)

https://www.facebook.com/themotherbear/videos/10213564470100403/?l=6232150327585476412

8.) We Aren't the Only Ones Asking Stupid Questions
Elise told a friend they were taking out her lymph node to send off for tests and the kid asked, "Will they put it back when they finish?"  Another one said, "Does this mean you have lung cancer? But you don't smoke."  And still one more, "Well, some people don't die from cancer, so that's good."
(Encouragement isn't everyone's spiritual gift.)

9.) Cancer
Our home has been touched by cancer through my Mother's journey. I'm not ignorant about the disease or sheltered from its impact. However, I can say this definitively: there is nothing like sitting in a waiting room with your child, agonizing over what might be, what could be, what will be, watching 15 other families and their very sick children who are there for treatments, tests, surgeries, knowing that everyone in that room, clinic, floor, hospital, city block will never, ever be the same after walking that path. It's emotionally exhausting. But families all over Birmingham, all over the U.S., and all over the world are struggling with the same (or their version). My empathy for these people has never been higher. I can assure you that my prayer life and my tangible support for families with sick children will change as a result of what has already happened.

10.) When There is Nothing Left but Hope and Faith
That's when you know you either trust Him or you don't. It's funny, but I am not a worrier by nature. I do agonize over the things I am responsible for and can have an impact on--like my teaching or scheduling or my home life. But things I can't change? I don't usually spend a second worrying about weather or jobs or anything outside of my sphere of influence. So, I'm trying to approach this the same way. It's just another thing that we are going to give God all the glory for in our lives, because there is literally nothing we can do. It's out of our hands. It's going to be added to a very long, rich, beautiful list of things that were hard and God intended for our good.

So, until we know, that's all we know.

Love,
Charlotte
& the Fun Bus

I've Had My Five Emotional Minutes; Now it's Time to be a Gangster.

Monday, October 16—Elise noticed a small, fluid knot/bump thing under her neck. Right side. It was soft, malleable, and raised slightly. I could see it under her skin by Thursday.  (She hasn’t been feeling well or “right” for a couple of months. We figured it was changing weather, senior year blues, and maybe a little old-fashioned depression thrown in for good measure.) I called Patel and made an appointment for Friday, October 20. He believed the first course of action was to treat it like an infection and prescribed Bactrim and a follow-up visit for November 6 after the cycle of medicine was completed.

I kept a close check on the knot/swollen area, checking it every day to see if it had gone down any. If anything, it got bigger. I called and moved her appointment up to the day after she took the last Bactrim pill on Wednesday, November 1.  The lump was not only larger, but it hurt—she said that pain radiated out from the area into her jaw and up into her ear. 

While we were at that visit, I also showed him some places on her legs that we thought were infected bug bites from an outdoor wedding early in October. They weren’t healing properly and just looked sort of odd to me. I told him about some other symptoms we’d been having at the house like night sweats, itchy skin (where we thought she had bug bites), lethargy, feeling sick or “unwell” a lot. Her skin has also been an off color—not like her usual skin tone (something maybe only a mom would notice). She’s also had no energy at all--like being abnormally tired all of the time. I casually mentioned that my mother had been diagnosed with and beaten non-Hodgkin’s lymphoma (I recognized some of the symptoms because of my mother’s situation).  Patel ordered bloodwork immediately (done in his office) and a CT scan.

We went to Shelby Imaging Friday, November 3 at 8:15 for the CT scan of her neck. We were told someone should be in touch with us by Tuesday, November 7 with results. We rolled back home where I packed up and loaded the car ready to roll to the basketball tournament to see Carter and the Patriot’s tear it up in Ozark. I left Elise at the house and went on into school to finish the day.

Patel’s office called my husband at work at 11:00 and asked Steve and I to be in his office to discuss the test results at 12:30. (Not going to lie here, when Steve called me and told me he’d pick me up from the school and we’d go to Patel’s together my entire stomach hit the floor.) In all of the medical emergencies our family has ever experienced, “We need you to come into the office two hours after a CT scan to discuss results for your child” has never come out of anyone’s mouth. I don’t wish that panic on anyone—friend or enemy.

Dr. Patel was direct, to the point, and clear on the results. I will never be able to thank him enough for not beating around the bush or trying to sugar coat the situation. He and the radiologist at Shelby agreed that the lymph nodes in question are some kind of lymphoma. He has referred Elise’s case to Dr. Kimberly Whelan—a hematology/oncology pediatric physician with hospital privileges at Children's and UAB. She specializes in pediatric blood cancers (lymphoma specifically in children). She will be our first appointment this week. We will schedule surgery to remove what can be taken out of her neck and then determine the course of treatment based on the type of lymphoma Elise has.

We went back home from the doctor’s office and told the family, all except Carter who had already left with the basketball team to Ozark for the tournament. We had a family vote and decided unanimously to keep the info quiet until Carter finished the weekend. It wouldn’t help him or the team—no sense buying trouble or worrying over things you can’t change. Carter’s team made it to the championship game and lost by a hair. He also made the all-tournament team. He stepped up and had an excellent weekend with his team. I’m so thankful Elise was selfless and that we waited to tell him. See, Carter is her best friend on the planet. Not having his comfort and concern was a difficult sacrifice. She put someone else’s needs above her own, which makes me beyond proud of her character.

Elise’s biggest concern is not the actual cancer—it’s that she doesn’t want everyone freaking out all of the time or acting like she’s dying. She’s not. She’s got tons of things that indicate a positive outcome—it’s curable. She’s young and healthy. Her blood count is good. Her attitude is good. We believe we have caught it very early. We have many solid reasons to believe she will be treated, healed, and simply roll on with the rest of her life. We choose to be more hopeful than afraid

We covet your prayers. We serve a mighty God who knows everything before it happens. I trust in His plan and believe to the bottom of my very being He wants the best for His children. We just have to pray, participate, and praise no matter what.

Now we go forth and conquer. Or to quote my brilliant daughter, “I’ve had my five emotional minutes; now it’s time to be a gangster."

Love,
Charlotte
and the entire Fun Bus 

The Secret

So, for the past three years in my personal life there is something that hasn't been public--it's been hidden away like a little treasure. Like a secret. A big one.

Here it is...

My spiritual walk has been killing it.

(Whew. It's a relief to have that finally out there in the open.)

I've been on my face seeking the Lord more fervently in the last three years than perhaps all of the other years I've been saved combined. I've read through the entire Bible again. Twice. I've prayed without ceasing. I've cried out to the Lord. I've memorized large chunks of Scripture for the first time in my life. I've repented. I've begged God for healing and restoration and forgiveness and provision and guidance. I've had close, unbending heart friends who have guided me in Scripture, prayed with and for me, held me up when I was weak and in the flesh, given me powerful and sound counsel to avoid falling into the pit myself.

And through all of that, I've come to these life-altering, faith changing conclusions:

Most people who profess Christ and say they are walking closely with the Lord are really under a great delusion. They are living empty-shell lives--beautiful on the outside, a perfect image presented to please the crowd--but the inside is rotten to the core. (1 Samuel 16:7) There is nothing authentic in their walk. They want to present a brave face without any substance. This is perhaps the saddest thing of all in the church.

Lots and lots of people are living under a series of rules and restrictions not rooted in love but in personal ideology. (Proverbs 3:5-6) Human rules are ever changing. God rules stand in any storm.

Sometimes people are unconcerned with truth at all--they simply desire to be justified or "right" rather than righteous. Your being right all of the time will send people straight to Hell simply because the Lost find you completely intolerable and won't listen to your gospel, because you're screaming it at them from a high, lofty, ridiculous perch. You aren't right or righteous. You are ridiculous. (Remember Paul became all things to all people that he might reach some.)

I've sat in church with people quoting scripture, praising the Lord, singing songs, bowing in prayer, (even lecturing me about my spiritual walk--where I almost cackled laughing because of The Secret) and then publicly, loudly, repeatedly the same people refused to forgive a close relative of a perceived grievance. (Matthew 6:15) You cannot say you hate your brother and Love the Lord. (Sorry about it.) (No, I amend that--YOU should be sorry about it.)

Having been the pastor's wife for quite some time now, I know lots of your business. Lots. Of. It. Most of us have no room for judgment. Like you should be embarrassed and seeking God's face for yourselves. (Sorry about it.) (No, that was a lie. I'm not sorry at all. It makes me feel sorry FOR you.)

Some folks need to seriously learn that list of things God hates. I'm not kidding. You are confused about what really irks God the Father. (Hint: it isn't adultery or homosexuals or pregnancy out of wedlock or cuss words in literature.) (Proverbs 6:16-19) (Anyone who knows me knows I'm not sorry at all about it.)

David begged God in like almost, oh, all of the Psalms he wrote (under the guidance of the Holy Spirit, might I add) for God to crush his enemies in violent, direct, profound ways. I've discovered that is a freeing prayer. Eventually, you get around to forgiving, because you pray over and over for some crazy person and God finally brings it around to your part in the problem and you get to repent again. So, I know factually some of you have been attacking me and/or my family but haven't prayed for us.

Shame on you.

God isn't amused by that at all, and He and I are tight at the moment. Like on fire tight. I'm afraid for you, so I pray for you. Not kidding. Neither is God. (Psalm 35 to you.) (Sorry about it.) (No, I take that back; I'm not sorry about it at all. I probably need to pray again. I know I need to pray again. We all need to pray again. And the Holy Spirit needs to interpret for me personally on a daily.)

With all of that said, God is a God of restoration and forgiveness. The key to both of those things is up to you--it's repentance. You can't click the tumblers of the lock until you really say you are sorry and really mean it and really turn from your wickedness. I'm so thankful that I've learned the Secret to that lock and am applying it liberally, daily. I wish the same for you.

God in Us

I John 4:7 DEAR friends, let us love one another, because love is from God and everyone who loves has been born of God and knows God.

But there's more...

I John 4:9-10 God's love was revealed among us in this way: God sent His 'One and Only Son into the world so that we might live through Him'. Love consists in this: Not that we loved God, but that He loved us and sent His Son to be the 'propitiation for our sins.'

It's not just love. It has to be the kind of love that can only come from God. 

And folks, I do not have that in me without the Holy Spirit in me. I have to lean on Him daily for provision to help me love the unlovely. Because I too am frequently unlovely. Hey, I'm not being overly humble, so are you, Sunshine.

But this is God in us. When something is beyond human comprehension or obvious personal gain, then it can only be attributed to God working in and through us.

So, when I...

...forgive without restitution or apology, I show forth God in me.

...do something without being asked, simply because it is the right thing to do, then I show forth God in me.

...do every single task whether great or small to the very best of my ability, I show forth God in me.

...give even when it hurts, I show forth God in me.

...turn the other cheek, I show forth God in me.

...avoid gossip and backbiting, I show forth God in me.

...tell the truth even if it costs me something, I show forth God in me.

...apply myself with a single-mindedness to excellence, I show forth God in me.

...extend a friendly hand to a new person in my sphere of influence, I show forth God in me.

...let go of petty things and cling to the promises of God, I show forth God in me.

...remember that Obedience to God is always the most important thing, I show forth God in me.

Lessons from VBS

Vacation Bible School Lessons:

1.) People want to be involved at your church in real, practical work. You have to let them be useful. They want to volunteer and work and be engaged. Now let them. Tell everyone yes and give him/her a job.

2.) Never underestimate the power of vomit to clear a room.

3.) If a child tells you he/she has to pee, believe it. Every time. Even if it's a drill you can never be too safe.

4.) Not all hot dogs are created equal.

5.) Teaching the new VBS music is a young person's game. I'm not kidding. It's like aerobics for 2 1/2 hours a night.

6.) I thank God every single day He didn't call me into elementary or preschool ministry.

That is all.