Every Little Victory Counts!!

Look who's attending classes & having lunch w/ friends at co-op today!! 

Losing Fingers....Or At Least the Feeling in Them...

Ashlyn has 4 diff nausea meds that we are rotating, trying to find the magical combination.....one of which (that seems to work pretty well) comes in a non-crushable capsule type thing that she can't swallow and that I can't crush and administer through her g-tube. In the hospital, they extracted the liquid with a hypodermic needle....for the 2nd day in a row, I have put a hypodermic needle almost all the way through my finger trying to get the liquid out...it is NOT as easy as it looked. Ouch. cry emoticon Who needs that finger anyway.....and where's that firefighter I mentioned yesterday?? I could use some medical attention myself right now! wink emoticon

Her throat and tongue hurt and we may be starting to see the appearance of the mouth sores.....

‪#‎PrayForAshlyn‬

And pray for my nursing skills. That stupid capsule is not going to get the best of me....I may lose a finger trying, but I won't stop trying to conquer it....wink emoticon

Run For Ashlyn

Someone who doesn't even know us personally, but knows our story through a friendship with extended family, is running the Fort Worth marathon in Nov. and wants to use his miles to raise money to benefit Ashlyn heart emoticon

‪#‎PrayForAshlyn‬

https://www.crowdrise.com/runforashlyn

How awesome and thoughtful is that?!?!

A Coffee Experiment....

Live and learn. Mama came better prepared this time. 

 Dark roast instant coffee to add to weak & wimpy hospital coffee, my favorite creamer....and a real coffee cup.

Coffee. Should always be a good experience....or why bother???

After coffee conclusion:  It was better, but not as good as it should be.....hmmmm.  I'll keep workin' on it. ;)

"I Have To Believe" - Rita Springer

Checking In For Round 2....

After a morning of bloodwork & then taking my girl to lunch & killing time waiting for a room, we are all checked in for a 4 day stay at the Wolfson's Efficiency Inn & Suites (Wolfson's Children's Hospital)....

She’s been on IV fluids for several hours and  we're waiting for Chemo Round 2 to begin as I type.  I have to do something to distract myself....this room is TOO QUIET…..so I guess I’ll try to find words for the update so many have been asking for. {added after the fact:  this turned out longer than I expected.  Once I started, I just kept going ;) …..everybody’s got their ways of processing & my way is often in writing. Once I get started.   Read what ya want and leave the rest for someone else J }

Today's lunch was  one of the few things that has tasted GOOD to her.  We have gone through a progression:  Things have tasted metallic....or nothing tasted good and it all just came back up anyway, making her afraid to try to eat anything, to finally having success little by little with small amounts....grits was a hit for a few days.  Then a few backsteps to throwing up everything again....and finally, day after day an appetite returning.  But still , nothing tasted right.  Nothing had flavor.  Nothing tasted REALLY good.  Lunch today....she'd been wanting seafood and I was determined to let her have it before she went back in.....it was GOOD & tasted just like it was supposed to.  We stopped at a few places and it felt ALMOST normal, except that it wasn't and I kept listening for the phone call that would tell me to bring her to the hospital.  She's just started to feel better physically the past several days.  Not my normal Ashlyn and she tires easily, but much better than she was the first week and a half after beginning her first round.....emotionally is another matter altogether.  Driving back here was incredibly surreal....everything about this is surreal.  So completely not wanting to bring her back and make her do this again, and again, and again, and again, and again....and yet having no choice.   I wish God would just go ahead and let me do this for her already….I think I’m already feeling so much of what she is anyway.  I felt sicker and sicker the closer we got…..and sicker now still, just waiting for them to hook up the chemo.  And watching her smile and be sweet to the nurses, giggling at something one of them said….while I know what’s going on in her heart.  And it’s not smiles and giggles.  It’s FEAR.  And anger.  And sadness.  And every other emotion you could possibly imagine she might be feeling.  She’s good at that…..that smiling and being sweet to them….and acting like she’s ok with most people when she’s not.

Ohmygoodness, the multitude of things that flood my mind….one continuous, unending, relentless stream…..one thought after another, competing and fighting for attention and their place at the front….The nice guy who checked us into the hospital smiled as we walked in and immediately said, “You go to FBC, don’t you”?  “Yes, we do”, I replied as I gave him our last name.  He looked at his list of admissions and said, “this is Ashlyn”????  He brought us up to our room, talking the whole way.  I met him on his way going back down and he asked me things he didn’t want to ask in front of Ashlyn.  The last question he hesitated with & stammered around on, wondering about her stage, until I said it was ok….he could ask.  His initial facial expression when I told him….that he quickly tried to cover up,  made my heart skip a beat and made it hard to breathe.  And I smiled and finished the conversation, thanked him for helping me not get lost and for his prayers….and headed back to the garage to get more things from the car.  That garage.  It was far too quiet.  She was fine.  And so stinkin’ hot.  It was just supposed to be an infection.  Easily cleared up.  I walked to the farthest side where I had parked and kept trying to BREATHE.  Deep breaths that just still didn’t seem to give me enough air.  And I couldn’t get my heart to calm down…. Cancer.  Stage 4B in my mind.  She’s never been sick.  Nothing more than a common cold or virus.  It was just supposed to be an infection.  Easy peasy.   Get it cleared up and get on with things.  CANCER.  Stage 4B.  That chart….it only goes to 4C.  FEAR of what if.  That sick feeling that doesn’t go away.  And tears stinging my eyes as I kept walking, trying to breathe and those stupid thoughts….the worst ones kept fighting to be at the forefront.  And I walked….just keep putting one foot in front of the other…. and tried to find my car…something to focus my gaze on.  I wondered where all those OTHER thoughts that are usually there went and tried desperately to find them, to push away the ones that were doing this to me.   Lord knows I’ve got enough other stuff going on that I should be able to find something else to think about…..where’d all those thoughts go???

Funny how what is in reality only moments of time can seem to be neverending and to drag on forever.   And finally, there it was.  I fixed my gaze on the car.  Loaded myself down with everything in it so that I wouldn’t have to make another trip and headed back.  And I thanked HIM for the weight of those bags and blanket and pillows….the weight of carrying more than I should and the pain of several bag handles digging into both my hands & shoulders so that I thought they might fall off.  For the ache in my arms the longer I walked….it’s a long walk from the garage, through the hospital and up to our room.  ;)  With each step taken with that pain, the other pain lessened and the fear lost its grip on me.   And I thanked HIM.  I thanked HIM for never leaving me.  Not ever.

And I got back to the room, took one more deep breath and walked in, Ashlyn giggling at the sight of me loaded down and my silly reaction to my hands screaming at me in pain and then relief when I dropped the bags on the floor.  And I smiled and said how awesome it was that God put yet another person in our path….a guy from church to bring us in today, someone else to tell us he was praying for us.  Talked about how amazing it is that we can see so clearly His hand, guiding us through and how he’s putting so many in our paths, to encourage and love us through them.   And I started unpacking while we giggled and joked about the horrible and disgusting hospital mac & cheese {and everything else served up in here ;) }.  I told her she just didn’t like it because she was spoiled rotten with her mama’s cooking real food and GOOD food ;) , refusing to relent to her persistent “just try it….just ONE bite” while getting out her own blankets because the hospital ones aren’t good enough ;) , organizing all our things while she watched me.  Always watching me.    Always listening.   Always counting on me.   Always trusting me.

Trusting me.  My stomach somersaulted briefly and that fear prickled.  I have to do the right things for her.  I thought about how MUCH I love her, how I would give my life for her…. to save her from this….without a thought or the slightest hesitation.  And that as much as this hurts me and as much as I love her…..HE loves us more.  

????? 

HOW is that even possible???  He has used my kids to teach me more about HIM and His love for me than anything else in my life.   As I love them, He loves me….only better.  And more.  A love like that I can’t even begin to comprehend or understand.  But I can accept it…..and beg Him every day that my kids will, too.   And I pushed those tears away that threaten so often, silently thanking Him.   For giving them to me.  For loving me.  And I asked Him to please….don’t let me mess this Mom thing up. 

They’re my Romans 8:28.  They’re my biggest and best GOOD in the midst of so much that isn’t.

I can't mess this up.

I feel like nearly every breath, every prayer, in my life and on various subjects, begins and end with two words.  "Lord, please.....", with lots of other words thrown in the middle. 

This is just a little glimpse into my day...our day.... as I write and I ramble, trying to make the thoughts be quiet while just outside the window, the sound of cars coming and going over the bridge makes me wonder where all those people are going to, living their lives and doing their thing while we're sitting here in this hospital room, wishing we could go and do....anything else but this.  I wonder how people do THIS without the Lord.  And for those who know the Lord, I wonder what goes in the middle of their "Lord, pleases".   What goes into the middle of your "Lord pleases"??  

If you have a home and someone who loves you and who's there for you....and children who are healthy and happy....please make sure you throw some thank you's in there, too.  Because I'm sitting here waiting for a chemo that I hate to be pumped into my daughter, knowing that when she wakes up in the morning, she's not going to feel good.  And that in the days ahead, she'll feel even worse.  And that her smile that I got a glimpse of today might not make an appearance tomorrow.  And I hate it.  I hate chemo and what it does to her.  But I hate the alternative more.

Lord, please.  Let this work.  Please. 

Motherhood....

"Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest."

Debra Ginsberg

 

Yeah.  

THAT. 

Takin' A Ride In a Li'l Red Wagon...

Been trying for a week to take Ashlyn for a ride in a wagon, but she wld not consent.....she strangely doesn't always find my sense of humor & adventure as amusing as I do!!!

So I'm taking her tokens of love for a ride!!! We have covered all of garage level 3....I didn't park there!!! Let's see what level 2 has to offer us....

Poor kid...has ME takin' care of her...smh

Trip 2....the monkey doesn't get as much of an adventure, but he still made several people smile along the way....

One more should do it & then we'll keep waiting for discharge papers...

#PrayForAshlyn

Psalm 40:2

"Still My God" ~ Avalon

"We Are The Reason" ~ Avalon

Haven't heard this song in forever!!! Still love it.....don't mind me, just having a li'l worship experience in the hospital room this morning.....& trying to pull a certain someone into it with me ;)

Moms. We can be so annoying. :P

‪#‎PrayForAshlyn‬

Music Speaks....

Hard day for my sunshine....in more ways than just physical. She thinks I'm playing some of my favorites on youtube for ME. The songs that bring peace to my heart & soothe my soul in the most painful of times, the words and truths of God set to music..... music often does things that words spoken in other ways can't. Mamas of teens, and mamas of teens who are faced with something that is so terrifying, have to have a few tricks up their sleeves sometimes.

This is where she finds out what kind of faith she has. This is where it gets real....

‪#‎PrayForAshlyn‬

Let a Little More Sunshine In....

Ashlyn was not up for visitors again today :( , but that didn't stop a few friends from dropping some things off! :)

 

Do you remember my post about Ashlyn, her friend Laura, and their "BFF" that they made while volunteering at VBS last week??  This is a pic of the three of them (above).  Love all the pics she brought....and love me some Laura ♥

Her room is looking more & more cheerful!! And she likes the decorative effect, so I was sure to remind her to always remember :: Mama Knows Best!!! :P

AND....yes, I did hang that HUGE banner all by myself ~~ just call me ElastaGirl !! ;)

#PrayForAshlyn

Blessed ♥

Have my laptop in my lap....care to guess who typed that while sitting beside me, on my right???

And there's someone else that I've been missing like crazy on my left.

And sleeping beauty lies in front of me.....

One Blessed Mama Right Here ♥

The Guest Book...

During a visit the other day, someone suggested having people sign in as they come. The more I've thought abt it, the more I've thought what a great idea it was.....for Ashlyn to have a kind of "Guest Book", not just for this hospital stay but for the duration of her fight. A record of all those who love her & come to pay her a visit & spend time with her, to be able to look back on the days ...and see just one more way that she's not fighting alone. A visual reminder that God is with her in so many ways, using the Body of Christ to love, support & give her strength with each hug, smile, laugh, gift & card given, milkshake brought, movie shared.....& in the sometimes needed quiet moments, when someone cared enough just to sit and share the silence with her.

I just started it & I'm trying to fill in the days before today....and hoping I don't miss recording anyone!! The days....& my mind....get a little blurry sometimes!! Sigh.

Just look at all the sweet friends who would have come today. :( Hoping that she will start feeling better tomorrow & be up for more visits soon. ♥

#PrayForAshlyn 

Let a Little Sunshine In....

She told me not to decorate her room, but........really. She should know her mama better than that!!! ;)

 It's a start.....sure wish we cld have the flowers that ppl have brought in here!!

#PrayForAshlyn

A Sweet Reunion...

Ashlyn is feeling pretty yucky this morning & is asking for no surprise visitors today.

Last night we had a surprise reunion with these 3 precious girls & their mamas!! I can't remember the last time we were all together at once. What a blessing it was to have them... all here & the fact that they happened to come at the same time, unplanned, on the night she began chemo & right before she wld start feeling bad, is just another example of God's constant presence, unfailing love, & of His perfect timing. We let them stay late & cherished every sweet moment of catching up. 

My heart aches this morning as I look at this picture & long for the days of this foursome being together often, and the foursome of me & their mamas being together right along with them!! Homeschool field trips & events, sleepovers, ice skating, beach days, pool days, Thanksgiving Feasts & Hilliard fun days.....so many precious memories associated with these beautiful faces!! Love each one of them so very much!!

Job 2:11 "Now when Job’s three friends heard of all this evil that had come upon him, they came each from his own place...........They made an appointment together to come to show him sympathy and comfort him."

The appt of coming together the way we did last night was was not made by any of us, but it was made by the One who knows our hearts and our every need. Thankful.

#PrayForAshlyn #GodIsGoodAllTheTime

Results and Stage Change....

Ashlyn has begun her first round of chemo. Each round will be a 4 day, inpatient process. We will be in the hospital through Tuesday, when this first round will be complete.

Bone scan showed 2 spots in her knees lit up & we had X-rays done today to determine why. It could be cancer....or not.

After all the tests/scan results....her stage has been upgraded to 4B.

#PrayForAshlyn

Bone Scan....

Ashlyn's has a bone scan is at 11 & should take abt 1 1/2 hrs. The tracer they injected for the scan has to leave her system before they can begin chemo, which is still scheduled for today. Still not sure when she can leave...depends on the type of chemo she is getting. Waiting to find out.

I've been given some info that has caused me to ask for a cpl of extra tests (including the blood work I pos...ted abt yesterday) and also for her Dr. to consult a team at UF/Shands abt her. I can't tell you how intimidating it is to know she is at the best hospital & has one of the very best Drs in his field w/ 25 yrs of experience, & ask for tests & consults that interfere with his plans. He bristled at my questions & requests & this mama had to push a little and not back down....to a Dr, she's a patient...but to me, she's my world!!! I laid on the couch in her room this morning with tears & fears abt making a mistake or wrong choice in her care .....Ashlyn has no say in anything that's happening to her & is completely depending on me to make the right decisions. I prayed that if this team had info that wld make a difference for her, that he will lead her Dr. to listen & respond. And then, an hr later I found out abt the bone scan which I feel is a direct result of that consult. It is not normal protocol & was not part of the plan.

Praying that nothing shows up, but thankful that if it does we will know sooner than later. Thankful for a sweet friend's help so that I knew what to ask for and for filling in the UF/Shands team for me so that they already knew all about her so that we can leave no stone unturned for my girl. ♥

""I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye." Psalm 32:8

"Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." Proverbs 3:5-6

‪#‎PrayForAshlyn‬

More tests....

Just had more blood drawn from Ashlyn for a test I've asked for that I'm praying to hear negative results on.

My heart is praying one way, but my mind has to brace myself & plan for what looks like may be the opposite. Not thankful for the suffering of others, but SOOO thankful for how God uses them & their experiences to help others in their time of need & makes connections at just the right time.

Praying for supernatural wisdom & discernment in the days ahead. My baby's counting on me....and we're both trusting in His leading...

Asking for y'all to do this for me ::
"For this reason we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding" Colossians 1:9.

 

 ‪#‎PrayForAshlyn‬