Big Update....

She has a couple more appts this week and has her 4th round of chemo on Saturday. It will be an 8 hr day, but not an overnight stay. smile emoticon She begins proton radiation therapy at UF/Shands (here in Jax) next Monday, 10/6. She will have radiation M-F, 5 days a week. She will have a couple of weeks of no chemo, then another round on a Sat. (no date yet). I don't have times for her radiation, as it may change from day to day. I will get the appt time for the 6th on the Friday before, and we don't get the next day's time until before we leave the previous day's appt. So....I find out what time to come on Tuesday before we leave our appt on Monday, and so on. And our appt times can change at a moment's notice. If they are running ahead of schedule, they will call and tell us to come early. If they're running late, they'll call and tell us to come at a diff time. We're basically on call for radiation. wink emoticon She will have 35 days of radiation, which = 7 weeks.

We were hit with a completely gut-wrenching, heart breaking list of side effects from the radiation therapy on Thursday.....some probable, some possible....that left us both literally numb & sick. I can't even express how you feel as a mother, trying to process the horrible things that could happen because of a treatment you're consenting to for your 16 yr old daughter....trying to process them yourself while at the same time worrying about how SHE'S processing it. (The Ashlyn that you see at church is not usually the Ashlyn we see at home....there's a huge emotional roller coaster we're riding, white knuckles and all!!) It'll wipe you out. For days. Only you don't have time to be wiped out....you've got things to do, places to go, appts to keep, phone calls to make, 3 people to take care of & their schedules to keep up with & counseling & therapy to offer at a moment's notice, throw a class or two in there to take here & there, a future to plan for 4, meals to provide, etc. etc., etc.....oh...and try to fit actually working a little bit in there somewhere....

Y'all have been so amazing and faithful in your prayers.....so, as I have in the past, I'm going to post the good, bad & ugly so that she can be prayed for very specifically. I know it's your prayers getting us through....THANK YOU & keep up the good work!! smile emoticon She should have suffered much more than she has so far....her oncologist just "can't believe" how healthy she is & looks, that she still has her hair (she's actually lost at least 1/2 of what she started with but only we notice it), and how well she's reacted to the chemo. He said he had to admit to us now that before he began when he saw her tumor, he wasn't sure that it would respond....and just "can't believe" how well it has! She also had a mass on her original MRI that is completely gone now. There are some lymph nodes in her groin, underarms and chest area that are still lighting up. We were told that it could be nothing.....or could be precancerous and will be monitored. Mama don't like. 

**Possible** acute side effects:: extreme fatigue, irritation/inflammation of skin, peeling, blistering, mouth/throat irritation, hair loss ~ both temporary and permanent, dryness in mouth, nausea/vomiting, inner ear fluid buildup, hearing loss ~ both temporary & permanent, mucositis, mouth sores.

**Possible** long term side effects that could show up months or years down the road:: neck swelling, neck stiffness, swallowing disfunction, ear fluid & partial or complete hearing loss in one or both ears, optic nerve damage, loss of vision in one or both eyes, pituitary gland problems, salivary gland problems, thyroid glad problems, brain/brains stem damage that could affect strength, sensation, bladder control, etc....paralysis....nucrosis of the brain which would affect memory, concentration, IQ....lockjaw....AND the radiation itself could give her more tumors and that would happen 7-8 yrs. down the road....

People thank me for being transparent.....I'm transparent because while I've always been a pretty "real" and down-to-earth person by nature.... if you go through enough stuff, you reach a point where you can be nothing BUT transparent. Because you DESPERATELY need each and every prayer that anyone is willing to offer up for you and those you love so much you'd give them your last breath if it would give them one more. If I share the ugly...even the side effects that are not probable but are still possible & how hearing the possibilities hit like a mack truck....and you are willing to pray...maybe she'll be spared. And maybe if I share all the stuff that families go through when they walk a road like this but don't usually share, it'll give you a little more compassion and mercy for the next one God places in your life. They're going to need it but they might not be as wordy as I am wink emoticon and maybe you wouldn't know....but now you will.

Something I have only shared with a few:: I have had a couple of other families with children with Ashlyn's diagnosis who have given me info...and have researched a bit myself....that indicates this type of cancer doesn't play around or go away easily. That the tumors respond to the treatment.....but that the cancer lies dormant...and then comes back. Sometimes in a few months, sometimes in a year or so........so the lymph nodes that could be nothing but are lighting up will always be there, in the back of my mind. Even though I know that this is HER story and it doesn't have to be like theirs. Even though I know that HE has her days....however many they will be.... laid out before her and that it's all in HIS control. Even WHEN she's healed of this tumor completely.....it'll always be there. That knowledge, in the back of my mind. And I think I'll always be waiting.....for that all clear when we go for check ups and scans. Always. It's not a lack of faith thing. It's a Mom thing. And maybe a Life thing.....the things that my Life has taught me....live every day to its fullest, to the best of your ability, smile and laugh at every opportunity....and if the opportunities don't find you then you make your own, be THANKFUL in everything, in every moment.....and don't waste any of them. But also be ready to be knocked down at any time, without warning. Always be ready for the fight.

‪#‎PrayForAshlyn‬

Insurance....and Stupid Questions

With Ashlyn's insurance, I have to have these little chats every week when they call to verify and update info so that they will continue to pay their part. They really need to rethink some of their questions, and...as with everyone else I've spoken to today (and many in the last week, both on phone and off), their personality and demeanor could use a little tweaking....I just hung up from our weekly phone session.

Last question from them today: "So....are you and Ashlyn having any stress at all due to her diagnosis and treatment"?

?????

‪#‎YouveGOTtoBeKiddingMe‬‪#‎HadToBiteMyTongueBeforeiGaveMyAnswer‬

‪#‎IusedToBeSweet‬ frown emoticon

Overload

Another day, a new facility!!! More forms to fill out and signwink emoticon , more answering the same questions, telling the same story......meeting new ppl, learning new things....

That saying. That you learn something new every day..... Seems like your brain would max out at some point. Mine just short circuits sometimes....

‪#‎OnlyByTheGraceOfGod‬ ‪#‎PrayForAshlyn‬

Sometimes, A Little Ranting Happens....

In this highly advanced technological age....seems like they could have a system of saving forms when you have to fill the SAME ones out, at the same facility, over. and over. and over. and over again. By electronic pen. And again with pen and paper. Repeat. Repeat. Repeat.....

Yawn. Bout to get creative with some of my answers.

And I've got a few other suggestions on more things they should change, too....

AND....it's ASHLYN!!! A-S-H-L-Y-N. Not Ashlynn <----w/ 2 n's. Not Ashley. Not Ashland. She's a person, not a place. Although...if she WERE a place, she'd be a fun place to go. I'd buy a year round pass....

‪#‎TheyShouldJustPutMeInChargeDontChaKnow‬ wink emoticon‪#‎IneedAnap‬ ‪#‎GettingGrouchy‬

Hair Loss

I just swept up a disappointing amt of hair from my bathroom floor, and it wasn't mine!! cry emoticon

She's had some thinning, but when she didn't lose it as quickly as they said she wld...and when her oncologist has commented with every visit on how he just can't believe she still has her hair, we've been hoping that maybe...just maybe...she won't lose it. She's kind of already decided it's NOT happening....

But that's quite a bit of long, dirty blonde hair now sitting in my trash can.... :'(

‪#‎PrayForAshlyn‬

Betty Crocker

adding to the list of things that make me smile::

Ashlyn, quiet as a mouse....in her own li'l world, listening to her music....removes the ear buds momentarily and says:: "that thing you made me last night was GOOOOD"!!

Yeah, baby. Even in the hospital, your mama can still get her Betty Crocker on.... ;)wink emoticon

‪#‎WhoDOESNTlikeRandomComplimentsOutOfTheBlue‬

Why, Yes....I Do Know My Way Around This Hospital....

I think I just wandered around...I mean, took an educated tour of.... this entire hospital looking for the Chick-fil-A to get something for Ashlyn.....funny how signs seem to pop up out of nowhere the 2nd or 3rd time you pass them. wink emoticonGood news is, I think I totally pulled off the I'm-not-lost-like-a-rat-in-a-maze-and-completely-know-where-I'm-going demeanor....so much so that a nice gentleman stopped and asked ME for help with finding something!! Always willing to help those who don't know where they're going.... wink emoticon

‪#‎FakeItTillYaMakeIt‬

Chemo Party No More

Yawn.

Chemo party wound down throughout the day yesterday and nausea started hitting hard towards the evening & last night. Nothing like being jolted awake to the sound of your baby vomiting violently. unsure emoticon

Yawn again.

No laughing, smiling, & silliness out of her this morning....

‪#‎PrayForAshlyn‬ ‪#‎CancerSucks‬ <------- Sorry. It just fits. 

Time is Precious....Take What You Can & Be Thankful

I **MIGHT** have a tendency to constantly beat myself up on my shortcomings.... as a mom.....and other things, too.

But my boys just chose lunch & spending a couple of hours at our house tmrw...taking trash & boxes out for pickup on Monday, feeding our rabbit & cleaning his cage, and hanging clothes in their closet that have exploded too soon out of boxes.... onto the floor and everything else in sight.... while my mom stays with Ashlyn ~~~~ just to be with ME, instead of having lunch & fun at a friend's house.

They still love me in spite of....me. I ***might*** have a little tear in my eye right now. heart emoticon heart emoticon heart emoticon

A Song for Everything

Chemo days do NOT make for Sunny Side Up mornings!!!!!

Trying to be understanding & grin & bear it when the Sweet One says to me as I fly by him....."you look so pretty. Red looks good on you. And I wish we didn't have to leave for a few days. You're doing a good job making the house look good. No matter where we live, you always do that. With the same stuff but you use it in different ways & it always looks good. How do you do that"?????

Smile. Cue the music. 🎶"I've got the magic in me....."🎶

"Oh my WORD. You've got a song for everything, Mom" with an eye roll & a smile & a laugh.

That Sweet One. He's my favorite today. 😉😘😍

Moms of Boys Will Understand

He makes me climb down off of my precarious make shift furniture-and-boxes-piled-up-ladder that gets me to reaching places I want to be....to say this::

Boy:: "Here. Eat this. It came off a plant outside". 

Mom:: "Ummmm.....no". 

Boy:: "Hahahahaha!!! Well, I did!! It tasted weird. I hope it's not poisoness!!!!!"

And he's gone, back out the door.

Alrighty then. 😳

Moving in the Midst of Cancer...a bright spot :)

That moment when you open a box that wasn't labeled.....and you find the other half of your shoe collection....it's GLORIOUS!!!!!

I've been wearing the same 3 pairs of shoes for 2 months....excuse me while I sit on my closet floor and bask in the happy of MY SHOES!!!! 🎉🎈🎉🎈

All organized & just waiting for me to choose which ones I will wear next!!!!

MY SHOES!!!! Sigh. I love them. 😍👡👡👠👠👢👢👟👟❤

‪#‎WhyYesiAmSuchAGirl‬ ‪#‎iAmNotAshamed‬