Tuesday, January 9, 2018

Sail On! Sail On! Sail On!

Information from the end of Round Three (day 64): 

Elise is severely anemic from treatment, so she had a blood transfusion today. They gave her two units over the course of four hours. She was in the hospital clinic for ten hours having tests, giving blood, getting blood, etc. Going into the hospital like that is more than exhausting. Our girl handles it like a champ, talking to and encouraging the people around her. I think she knows all of the nurses and half of the patients by name.

Transfusion!
Today, her daddy took her to do the hospital stuff at Children's. That was an adventure for both of them. Anyone who knows The Husband knows that he doesn't do "being still" very well. Thank goodness the nurses were in and out of the room allowing him to jog around the hospital for small breaks.

Some of her numbers were really off, so we repeated a breathing test to check lung function. We don't have results yet. I was there for the last breathing test. It's a pretty funny little deal.  The test is loud and isolated and just plain out and out weird. Elise is put into this chamber and given a breathing apparatus to blow into. It tests her lung capacity, strength, processing, etc.
Breathing test aka "LET ME OUT!"

Steve got so tickled at the woman administering the test because she's screaming through the glass over the equipment noise of the machinery at Elise, "Suck, suck, suck, suck, suck!!! Blow, blow, blow, blow, blow!!!" 

I think The Husband momentarily reverted into a 14-year-old white boy there for a second (think Beavis and Butthead). He and Elise couldn't stop laughing inappropriately (naturally--we are Johnsons).

(Seriously, it's really, really awkward.)

(Admittedly, weirdest test ever outside of a barium enema, but that's a story for another blog.)

Elise also having some pretty significant lower back pain in her tail bone and hip bones. That's pretty normal for chemo (it weakens your bones to the very core, since it harms your bone marrow production), so it's not unexpected, but it still stinks being in almost constant pain. She's loathe to tell anyone she feels bad. She has to be really low to tell you she's hurting or tired. The solution? Good pain meds. We've been controlling the pain via Tylenol until just recently. It's time to break out the big guns now. She made it a very long way into treatment without the good stuff. I'm proud of her stamina.

Hanging out while transfusing. 
She cracked a tooth (back molar) eating a soft flour tortilla last week. I didn't know this was even possible. (See weakened bones.) We can't see a dentist about it until she finishes treatment. We are thankful it isn't hurting.

She gained a little more weight (prednisone/steroid related), which isn't a bad thing at all unless you are a 17-year-old girl and that freaks you the heck out. I didn't realize how much steroids impact a person's body. Watching those St. Jude's Hospital commercials I have noticed how round the faces and tummies are of the children. It's the impact of steroids on the human figure.

We learned a little more about the radiation--it will begin after the finish of Cycle Four and will be performed over three-to-five weeks, every day for five days a week at UAB. No further information yet. I will keep you posted when I know something new and interesting.

We are so thankful for everyone who has sent money, gift cards, gas cards, notes, hats, brought food, called, texted, etc. I know that some of my thank you notes have fallen by the wayside. There is no thank you big enough for the support so many have extended to our family.

The Clinic 8 Entourage--there are another three nurses not
pictured but present--everyone wants to see Big E. 
Elise is stronger than I knew.
She is braver than I'd hoped.
She is more resilient than I prayed.
She is more powerful that I ever dreamed.

I know this sounds odd, but this experience has been a blessing. I know more about my almost grown daughter than most mothers get to learn about their teen girls.  At a time in her life where she would normally be pulling away and distancing herself to jump out of the nest, she and I are face to face daily. To say I am proud of her is a vast understatement. I am humbled by her every single day of this journey. I pray to God that I can be as strong and eternally optimistic as my beautiful child.

Until next time,

Charlotte and the Fun Bus

#BigEkickingtheBigC
#5shorties
#funbus
#funbusdetour
#gangsterstrong
#andstillirise

Tuesday, December 26, 2017

Time for Cancer Round Three--Christmas Edition

So, good news, bad news, because it usually travels that way.

We found out that the lymph nodes in the neck have returned to normal. The ones in her chest on her aorta, esophagus and windpipe didn't reduce as much as we'd like, so we have two more rounds of chemo then it's on to UAB for radiation on her chest. Not the best news, but not horrifying either. Just part of the show some people have to deal with. Where the tumors lie in her body eliminates surgery as an option. They'd have to crack open her chest, and that's obviously to be avoided at all costs. Meantime, we are in good spirits, haven't had another bout of infection, and are rolling onward toward the goal line.

Everyone is working hard to make sure that our house continues to move forward in an organized way. I don't even have to really fuss to make it so, which is either a sign of maturing teens or the result of really spectacular parenting. Either way--winning.

Elise has been deceptively active. What I mean is, that other than her bald head, it's easy to forget the child is sick with a potentially terminal illness. She's managed herself beautifully. I'm proud of the whole show.  She's had some nausea and has a general lack of energy daily, but she's learned how to conserve for big events. We were able to have a big Christmas with parties five days in a row. (yes, five.)

We had our friends over one night and played Dirty Santa with a twist--White Elephant style. You basically bring some ridiculous gift from your house that is so crazy people question why you had it in the first place. We had some adult diapers, boxers with unicorn/rainbow/cats in space, a Dennis Rodman wedding gown Barbie, Steve's old grey gym shorts (not kidding), a semi-inappropriate t-shirt towel with a thong girl, a broken nacho cheese machine, and various other bizarre items, making we question what you people are keeping that crap around for.

Either way, it was a party. We also had my immediate bear family over for dinner--our traditional lasagna for Christmas Eve. We were even able to go out for hibachi Christmas Eve for lunch. All of our ridiculous traditions kept, even during upheaval and cancer.

E and I check into Children's Hospital tomorrow for her third three-day, in-patient chemo treatment. We've packed movies and cards and lots to do.

I'm thankful and blessed beyond all measure. Life is good.

Love,
Charlotte and the Fun Bus

#5shorties
#funbus
#funbusdetour
#Eliseisagangster
#gangsterstrong
#andstillirise
#BigEkickingtheBigC

20 Random Factoids


Random Facts:

1.) I'm not a very nice person. I'm a holy person. The two aren't mutually exclusive.

2.) Not everyone suddenly likes you just because you have cancer or someone close to you has cancer. Some people still dislike you. That's okay. Right back at you, Slick.

3.) One of the meanest mammals on earth is a 7th-8th grade girl. Or her mother. Sometimes it's a toss up.

4.) I don't have to like everyone. I have to love them. There is a great gulf fixed between the two, and they rarely meet.

5.) If people are gossiping about you, you have great power over them. And they handed it to you. This is a powerful truth. You're welcome.

6.) Wield your mouth like the weapon it is. Carefully. With calculation and moderation. For maximum impact with the fewest words possible. Or sheath it and shut it and live to fight another day. Choose wisely.

7.)  Christmas brings out the weirdest gifts in people. Like with a capital W.


8.) If you don't believe half of what your kids say about me as their teacher, I won't believe half of what they say about you.

9.)  Sometimes you are the Griswolds. Sometimes you are Cousin Eddie. Laugh at yourself either way.

10.) If someone asks you if you want things to be fair or if you want mercy, always, always, always take mercy. Fair rarely works out in your favor.

11.) Never underestimate the power of a well-placed 'thank you'. And sometimes you should just do stuff without the need for a 'thank you'.

12.) Influence is measurable. Look at their children.

13.) Sometimes it takes a cuss word. It just does. And I'm not sorry.

14.) Apologize first and often. Mean it when possible.

15.) Don't buy weight loss or exercise equipment for a gift. Ever. There are no exceptions.

16.) If you tell me Naynuh did it, you are a dirty, rotten liar. If you tell me The Number One Son did it, I'll believe it's totally possible and probable. If you tell me Big E did it, I'll snort and say, 'Oh, I'm totally sure she did'. And if you tell me The Little Flower wasn't there, I'll laugh and laugh, because I know she probably orchestrated it then gave 'em the slip.

17.) Your kid will do that and probably did do it without any encouragement from the peanut gallery. Never say never. God will make it your kid just to prove a point.

18.) Just pose for the dadgum photo already. We all know what you look like. And when you preview the photo for publication, that is exactly what you look like, Sunshine. Get over it.

19.) If you have to list out everything you've done for me, it must be weighing on you that you aren't working enough. Just work harder. I promise I'll notice. And if I don't, Number 11 to you.

20.) That's all I've got for today.





Wednesday, December 20, 2017

She Walks in Beauty

James 4:13-15 
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”


She Walks in Beauty
BY LORD BYRON (GEORGE GORDON)
She walks in beauty, like the night
Of cloudless climes and starry skies;
And all that’s best of dark and bright 
Meet in her aspect and her eyes;
Thus mellowed to that tender light
Which heaven to gaudy day denies
One shade the more, one ray the less,
Had half impaired the nameless grace
Which waves in every raven tress,
Or softly lightens o’er her face;
Where thoughts serenely sweet express,
How pure, how dear their dwelling-place.
And on that cheek, and o’er that brow, So soft, so calm, yet eloquent, 
The smiles that win, the tints that glow,
But tell of days in goodness spent,
A mind at peace with all below,
A heart whose love is innocent




 
 


Wednesday, December 6, 2017

Hardee Har Har--I Shouldn't Laugh, But I Can't Stop

Someone asked if we should wait and do her senior
photos after her hair grows back. I'm like, "You mean
after she graduates?" Nah, we're good taking them now. She's
bald, not dead. 
I've got to tell you this cancer thing has been a comedy gold mine. Here are some incredibly funny, silly side notes where people were trying to be involved and concerned and ended up making serious comedic points (mostly on accident where they said or did something before thinking it through). Still, hilarious:

Someone asked Elise why she was having chemo. Because she's my daughter she responded, "Because of the pregnancy. Duh."
Person's reply, "Oh. Um...Congratulations?"
(I'm not kidding.)

Someone sent a note of encouragement. They failed to realize it was written in a bereavement card. (I laughed so hard I almost peed my pants. I wonder if that was an accident...)

Someone asked Elise her favorite food. Then they sent something else and wrote in the note, "I know you like _________, but this is my favorite. Enjoy!" (Hey, they were right; we liked it.)

Someone asked E if she shaved off her hair to donate to cancer patients.

Someone asked me before making baked goods if E eats nuts. I said no, she doesn't eat them at all except for peanut butter. They brought brownies covered in nuts. I stared down at them for a split second pause too long before saying thank you.  The person looked at me and said, "I know you told me that she doesn't like nuts, but they are so good for you when you have cancer that she needs them." (I loved the brownies. They were delicious. Of course, I love nuts, so...)
Elise giving at the blood drive two months before
her cancer diagnosis not during chemo.

Actual quote, "But how'd you get cancer? You don't even smoke." (The American Lung Association is killing it with their education program.)

Someone saw the blood drive post I made where I said that this is why donating is so important--Elise donated in September for the school blood drive and I used it as an advertisement for future blood drives, because we've received blood transfusions as part of our treatment. This person said, "Oh, Charlotte, she shouldn't be donating blood! She has cancer!" (Yes, yes she does. Thank you for that.)

Elise. Elise has cancer. Not Elaina. Elaina does not have cancer. Yet countless people have congratulated Elaina on her bravery. (Which she appreciates very much.)

Wearing this bracelet doesn't make you gay.
Unless you're already gay, but I'm fairly
certain it's not the bracelet's doing. March on. 
The ribbon for Hodgkin's Lymphoma is purple, so folks around us had some bracelets and t-shirts made featuring the purple ribbon. Someone actually said to me out of his mouth, "I don't know that I can wear that shirt or bracelet, because it's purple and that stands for gay people."

***crickets***

What the heck? Purple stands for gay people? Where do you get your news? Um, no, purple is the ribbon color for Hodgkin's lymphoma. Or maybe you could argue that it might represent Prince. Or that large dinosaur from morning TV. Or royalty. And it's usually a color representing wealth and luxury in theater. I'm fairly certain some gay people wear it, naturally, since it's fabulous, but since it's my favorite color and half of my house and all of my classroom are painted purple I guess I'm a haven for gay people. (insert eye roll here).

That is what E ate for dinner. Three bites of the
smallest pizza I have ever seen. I'm pretty sure the
five pounds isn't an overeating issue. 
(Hardcore Seinfeld Fan Moment, "WHO? WHO will not wear the Rib-Bon? Tell me!" I literally almost yelled that at the end of that conversation.)

Actual quote from multiple sources, "I can't believe this is happening around the holidays. What terrible timing."  (Cancer is sort of terrible timing all of the timing. Summer wouldn't make it taste any better. The port isn't sexier in a bikini.)

"How are you going to pay for all of this?"  (Good question. I'll keep you posted.)

This drug she has to take, Prednisone, is a steroid. She takes it three times a day for a week. It makes your face and stomach swell--like shifting your body shape. There's nothing you can do to stop it or change it--it will go away when you stop taking the medication. So, she's gained five pounds of water weight in her face and stomach. But her arms and legs have gotten smaller. Doctors said this is completely normal and just another joyful side effect of the medicine. So, E was lamenting about her face and stomach and someone said, "Oh, I gain weight over the holidays too. You just stay after it and you'll get that weight off in no time."

Um...
Good thing we always get the joke. And some of you people are hilarious. Keep 'em coming!

Love,

Charlotte &
the Fun Bus

#BigEkickingtheBigC
#funbus
#funbusdetour
#5shorties
#andstillirise
#gangsterstrong
#EliseisaGangster











12/5/17 Second Cycle of Chemo

What chemo treatment actually looks like. 
So, here we are again...same song, second verse.

The second time for in-patient chemo there are some noted differences. You know what to expect based on round one, so the mystery isn't as scary. But the flip side to that coin is that you now know that this is going to be uncomfortable and painful and nauseating and daunting and just plain ole awful.

Daddy brought her up here this time and got her situated so I could work an extra day. (This is only because I love my job and want to be there as much as possible, while allowing him to use his off day to our advantage.) So, I taught and got things together for a substitute the next couple of days while he got her checked into the hospital. I arrived right after they started the second medication.

Day one: admit and receive five different chemo drugs
Day two: receive four different chemo drugs
Day three: three different chemo drugs, discharge
Waiting for a room on the floor.

All of this occurs in addition to the anti-nausea, anti-heartburn, pain, nerve pain, antibiotics, benedryl party train we are riding. It's something. I think we are taking roughly 27 things a day.

The two biggest traumas thus far, however, were that we lost our hair and that we gained five pounds in a month.  The nurse congratulated her because some people really lose way too much weight (from being nauseated) and some people really gain a ton of water weight (from the drugs). She's taking Prednesone, which is sometimes known as "dreadnizone" because of the horrible side effects. Crankiness, moodiness, increased appetite, swelling in face and abdomen, water weight gain...we are having all of that in spades. (Although some of that could just be Elise being Elise in her natural state. Ahem.)
The duck face is always in style.
But explaining to a teenage girl that losing her hair and gaining five pounds are blessings (means the chemo is working and the Prednisone is working) is like trying to put a sweater on an octopus--exhausting and fruitless.

Still, she's working it like a champ.

Observations:
Nurses who work in pediatric oncology have to be called to it as a ministry. They are all so wonderful at Children's. We have had universally excellent experiences here at this hospital. I really can't say enough about it.

I hate traffic. I have no idea how I drove up I-65 into Birmingham every day for like 14 years. Not a clue. (You couldn't pay me enough to come back up here and work in this mess again.)

Hospital food has improved vastly over the last decade.

I think this sofa is half the length it should be and feels
like a cot from an Army/Navy surplus outlet specializing in
Communist Bloc prisoner of war camp relics.
I forgot how nice it is to sit in the quiet without any noise or talking or moving about. It's sort of blissful.

It absolutely does take a village to raise a child. I can't even imagine taking care of the 5,000 things I'm responsible for without all of the helping hands and intervening friends and family who have run to and fro for us over the past month.

If Disney can make an incredibly comfortable convertible fold-out bed that is the size of a normal twin bed, could someone please intervene on behalf of hospitals everywhere and share that technology with the rest of the world. Please. Seriously. (I'm not joking. I think this thing they want me to sleep on came over on the Ark.)

Someone stole my food from the Family Room fridge. Okay, so it was homemade roast, carrots, and potatoes, therefore I totally get it. (Proving that people are people all of the time even on the pediatric oncology floor.) (And no, it wasn't misplaced; they washed out my dish and put it back in the fridge empty.) (Again, not kidding.) Unbeknownst to them, I had TWO go plates in that fridge and got to eat some of my roast after all. (Take THAT, Karma.) Really only joking and not mad--it sucks being up here and eating homemade roast probably made someone feel much better. (It was spectacular, by the way.)

I am so blessed. So, so very blessed. In every possible conceivable way.








Wednesday, November 29, 2017

Senior Photos Class of 2018

Senior photos Class of 2018


My daughters have been blessed with wonderful classmates!




E and E sharing Elaina's hair. :-) 


The Wonder Twins. 

Everyone wants to rub your head when you're bald. 

Not sure what's going on here, but I'm in.