To Be Continued....

SweetDivaMJ is on vacation from blogging....but can't bring herself to delete her blog.  I've tried to keep updates limping along, copying and pasting from my fb page updates, as that's all the energy I've had to put into it.  I'm more than a little worn out from the events of the past two years in my life and have to focus all of my energy on getting my cancer fighter through the battle...and on to healthy living again.

To Be Continued....

Count Your Blessings, And Distractions....Again

......and my son just comes in the back door.

"Hey, mom....you wanna see my most prized possession"???? I turn around, and there's a dead lizard being dangled only a couple of inches from my face, with something in its mouth.

BB gun = 1. Lizard = 0. 

Mom = AFTER recovering from lizard shock & her heartbeat returns to normal = smiling that there will always be other areas of life that just keep movin' on....that boys will be boys....and that mine love to tease me, and that they just plain LOVE me.

But he better be thanking the good Lord above that his lizard kill didn't actually touch me. And he says he's going to hang him on his wall.

‪#‎ThatAintHappening‬‪#‎CountYourBlessingsNameThemOneByOne‬

Count Your Blessings

The cutest patient in the world slept all night....I think....and is still asleep. Trying to decide which of several medication choices to start her off with today, but don't want to wake her up. If she's sleeping, she's not feeling bad!!

I might try some of her meds myself....I was up partying half the night with vertigo!! And I just have to laugh....cuz what else can you do?? Life. It's a roller coaster ride. And some times it feels like it....literally. Right now, I think I'm riding the tea cup ride at Disney World....

But hey. She didn't have an early morning radiation treatment....which gives me time to get my dizzy under some kind of control before we go. And I've got coffee in my cup with cafe mocha creamer. It's good to the last drop, & there's still more where this came from. And the sunlight's shining in through the kitchen window and hitting my glass cup just right.....my cafe mocha coffee could audition for an advertising spot right now looking all pretty-like.... wink emoticon

‪#‎CountYourBlessingsNameThemOneByOne‬

Chemo Round 4

So.......chemo round 4 is hanging on tight & doing a number on my patient.....it would be great if she didn't throw up anymore today....and she's very tired & dizzy, too. It would also be great if she could get through the night without waking up to throw up like she did last night. It would kinda help if she could keep her medicine down...that's not happening at the moment.....

‪#‎PrayForAshlyn‬

I HATE THIS.

"My mind's eye remembers the trouble I've seen
All I have been through, and how I long to be free
But I learn by her patience that I need her resolve
To wait for the opening of eternity's halls
And I know that in time we will stand side by side
When Jesus comes back receiving His bride
Where there will be no more pain
No more sorrow
No more waiting
For the illusive tomorrows
There will be no more pain
No more dying
No more striving or strain
No more pain"....."No More Pain" by Point of Grace

Rev 21:1-7 (NASB). "Then I saw a new heaven and a new earth; for the first heaven and the first earth passed away, and there is no longer any sea. And I saw the holy city, new Jerusalem, coming down out of heaven from God, made ready as a bride adorned for her husband. And I heard a loud voice from the throne, saying, “Behold, the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.”
And He who sits on the throne said, “Behold, I am making all things new.” And He *said, “Write, for these words are faithful and true.” Then He said to me, “It is done. I am the Alpha and the Omega, the beginning and the end. I will give to the one who thirsts from the spring of the water of life without cost. He who overcomes will inherit these things, and I will be his God and he will be My son"

Taking Whatever Breaks I Can Get....

You might be pathetic if.... You're grocery shopping, like REALLY grocery shopping.....not just running in for 1 thing....and it hits you that you're doing something NORMAL. And you slow down and start looking at all the things on the shelves, to see if you can discover something new. Because you've decided that for 30 whole minutes, you can pretend everything is normal and good....at least until her prescription's ready.... ‪#‎iLikeTheLandOfMakeBelieve‬ ‪#‎CaniStayHereForaWhile‬

Officer Friendlies

we interrupt the cancer posts for a police rant::

dang, y'all......my newsfeed is often so full of negativity against law enforcement, attys, judges, etc.....personal posts, articles shared....and I know there's a lot of corruption out there, and am not going to say I like our government in general.....BUT...

I'm thinking of 2 very nice, sympathetic & helpful officers who came at my call not very long ago, stepped in & saved the day for me and my kiddos, gave me advice after assessing the situation and getting it under control, told me what to do because I was too upset to think, & stayed with us until we were ok .....and of times I should have called someone and didn't. I'm thinking of 2 very good attorneys who have also come to my rescue when all other options had been exhausted and have performed their duties and jobs in nothing but the most ethical of ways. And of judges who help pass things through the legal system and stop the crazy for those who need help stopping the crazy!!!

These people who are so criticized spend their lives rescuing people from themselves and coming to the aid of people who are targets of those who don't know how to behave with even basic human decency. They deal with crazy, maddening, and heartbreaking situations.....they spend long hours away from those they love to protect and serve us, and I'd like to think for every corrupt instance that makes the news, there's COUNTLESS good instances that never do and go unnoticed.

SO, for the officers that were my heroes for the day & whom I will never forget, for the attys that have come to my aid, and for the judges who process crazy through a constantly rotating door.....here's a positive post and a THANK YOU.

And, I'll throw firefighters in there, too. Cuz while I've never had one come to my aid, they put their lives on the line as well. And they're just COOL. And............I really like their big, red trucks. wink emoticon

‪#‎SteppingOffMySoapboxNow‬

First Day at Proton

....she feels yucky today....and is **anxious** about going to radiation. cry emoticon </3

And she gets mad at me for stroking her head and giving her a kiss on the cheek when I walk by her.

Get over it, girlfriend....yo mama's never gonna change. wink emoticon heart emoticon

‪#‎PrayForAshlyn‬

*********************************************************

The receptionist just looked at me and my 3 kids....looked at each one of them.....and asked which one is Ashlyn.

‪#‎BitingMyTongue‬

Smile. Be nice....maybe she's had a long day. Bless her heart.

***************************************************************************

She just went back for her first radiation treatment....after meeting with her dr. & again being reminded of how harsh her treatment is & of the side effects. And she was already wound tighter than tight with anxiety....

When I listed all the possible side effects, I purposely didn't include the %ages of likelihood for each. Some are much greater than others, some have small %ages....but quite frankly, when your daughter has been diagnosed with a cancer that she had less than a 7% chance of getting in the first place....you find ZERO comfort in %ages.

The only comfort I find is in knowing she's got literally a legion of prayer warriors covering her in prayer. You really don't know how much I'm relying on those prayers, or how often I pull up my posts & read each comment & scroll through each list of "likes"......& thank God for each one of you that keep "liking" & commenting, day after day....post after post.

In Christ our Hope is found, in Him our fears are calmed....and in prayer, you're getting us through. heart emoticon

Lord, show us your Glory.

‪#‎PrayForAshlyn‬

When You Get a Break from the Hospital...

Never undervalue the feelings of having everything unpacked, laundered & put away (again), everyone being under one roof..... having fresh, clean hair & skin that has had the hospital smell washed away and replaced with a scent that's much more "you"....and the comfort & bliss of your very own bed!! Ahhhhh....

‪#‎ThingsImThankfulFor‬

Sigh.

I would like a day where I don't have to have a hard talk or make hard decisions, please.... ‪#‎NotHoldingMyBreathOnThatOne‬ ‪#‎MaybeOneDay‬

Having a Mom Moment

She's sitting over there in her hospital bed....MAD & sad, reading her book & listening to her music with her earbuds in....and she's SO STINKIN' CUTE. I want her to be little again so I can cover her in kisses, smother her with hugs, hold her for a really long time, rock her in a rocking chair, sing her a song....and make her whole word perfect again....and watch her hop down from my lap & go grab a toy & play....cuz whatever had rocked her little word was gone & forgotten. Mommy had fixed it like Mommy always does. ‪#‎KeepScrolling‬ ‪#‎JustHavingaMomMoment‬

Only By The Grace of God

Looking through my calendar for a needed telephone #, because it has become my notepad, too, at times..... from January on....it's a MESS!!! Holy Cow. I went through/did ALL of that....and am still functioning?!?! And that's just a portion.....I need a nap from just looking at it!!!

‪#‎OnlyByTheGraceOfGod‬‪#‎GodIsGoodAllTheTimeAndAllTheTimeGodIsGood‬‪#‎Thankful‬

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