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.
Charlotte and the Fun Bus
Tuesday, December 26, 2017
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
Wednesday, December 6, 2017
|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.
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.
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.
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."
Good thing we always get the joke. And some of you people are hilarious. Keep 'em coming!
the Fun Bus
|What chemo treatment actually looks like.|
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.|
Still, she's working it like a champ.
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.
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.)
I am so blessed. So, so very blessed. In every possible conceivable way.
Wednesday, November 29, 2017
So, we had an odd little party tonight. It was a head-shaving party. The boys wanted to do something as a show of support so Elise doesn't feel alone. Now, we know it's not the same for boys most of the time, but these three? They LOVE their hair. Love it. But they love Elise more than they love their hair and wanted a physical, tangible show of force. And I will be forever grateful. And humbled.
|Carter, Liam, and Walker--Before.|
|The obligatory crazed girlfriend pose while the|
fake 'boyfriend' has hair.
|Liam taking the plunge.|
Best anecdote--the boys were cutting hair with a small, goatee-sized trimmer. They decided halfway through the cut that they needed larger, better trimmers. So, they took their half-shaved heads and went shopping at Wal-Mart. Weird part? No one even checked up.
|This is what love looks like.|
|And these are what superheros look like.|
|Elaina proving that she has enough hair for everyone.|
And even though he didn't make it to our house, here's Landon (a basketball teammate of Carter's and 9th grader) shaving his head at his house.
And here is Andrew (another basketball teammate of Carter's and 9th grader) shaving his head at his house.
Tatumn, a 9th grader who lives on our block, had her own head-shaving party when Elise was diagnosed. :-)
Joseph K. (who is also on the basketball team and in 8th grade) shaved his head at his house.