"Faithful One" ~Selah

A Rough Night...

If it weren't for the parking lot, it would have been a great, rainy, nighttime view of the bridge & the river from our room....

Our stay has been extended & we don't get paroled till sometime Wednesday. It's a nonstop party 'round here!! 

Ashlyn hasn't eaten anything since Friday & has only had 1/2 cup of water since then. She's nauseous, tired & not very responsive, cooperative or agreeable to things that wld be good for her. 

After a rough night, we've had a morning full of nurses', ACP & oncologist visits.....adjusting,discussing and making plans for switching some meds, etc., meeting the children's oncology psychologist (to which Ashlyn did NOT respond well to AT ALL  )....dietician to come tomorrow to discuss beginning g-tube supplementing if Ashlyn doesn't try to start eating  .....

The swelling in her 3 lymph nodes that was scarily big on her neck has almost completely disappeared.....her oncologist was impressed and surprised by how much the nodes have responded, so quickly. After Round 3, they will schedule more scans to see how everything else is responding. Keep praying....please 

"I Believe" ~ JJ Heller

"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. 

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

Operation Day

Time to show everyone what she's made of!!

Ashlyn's verse for her fight::

Deuteronomy 31:6 New International Version (NIV)

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥

AT 1:36 pm, Ashlyn was out of surgery....waiting in her room for her & spoke to the recovery room nurse...Ashlyn is doing well. She is drinking juice & talking....the nurse said she is being so sweet, is the best patient they've had all day & they want to keep her ;)

That's MY girl. ♥


By 2:53 pm, she was resting & listening to music, wrapped up in the warmth of a blanket that was part of an awesome care pkg given to her on Sunday!!

and....apparently, I don't look like MOM material....for the entire day, every staff member that we haven't yet met has come into the room & looked to every other person BUT ME trying to figure out who Ashlyn's mom is.

It's me!! It's me!! It's MMEEEE!!! ;)

I'm her mama.  <3

Another VBS Story....

Playing the waiting game while Ashlyn waits for her PET scan....& while I do, I have another VBS story to tell....this one is Jacob's. I can't share his sister's w/out sharing his. ;)

Before this latest crisis rocked our world like never before, we had already gone thru & were/are still going thru some TOUGH STUFF in other areas of life......and there was a boy last week that seemed to seek Jacob out, to want to hang out with h...im. During rec one day, they sat & the boy shared some things that he was dealing with in his family. Jacob then shared some of what we have been through, giving the boy someone he felt could understand and relate. Before the convo was over, this boy prayed to receive Christ. ♥

I have claimed many verses for me personally, but Romans 8:28 has been one that I have given my kids most often as I've tried to point out each and every example of God's goodness & provision, tried to tell them to hold on tight to Jesus because He will use them in ways He couldn't have before if they will let Him & give it all to Him ~~ the good, the bad & the ugly. None of these stories that I post are intended so that I can hear things like "you're a good mom" (I fail at that repeatedly & continually!!!!) or how sweet and great my kids are (although I wld agree with that one!!!). It's really not about us at all....it's about how GOOD He is, abt how much it blessed my heart to hear that they are starting to see these things for themselves....to see Romans 8:28 come alive for them & to see them feel that they CAN make a difference & ARE being used by Him. It's about nothing but the GOODNESS of God, abt seeing His hand at work.....making beauty from ashes & giving purpose in the midst of the pain. ♥

‪#‎GodIsGoodAllTheTime‬

Perfect Timing....

Hey. I have a story to tell! I bet you're shocked. ;)

Ashlyn made a friend while volunteering last week at VBS......the mechanical bull operator. She, along with another BFF...sweet Laura,  has affectionately named & called him "Best Friend", brought him snacks & goofed off with him on the days she was there. She has invited him to church several times throughout the week. On the days she had to miss due to her dr's appts, he found... out about Ashlyn's diagnosis and her upcoming surgery. Turns out, his sister just had the same surgery last week for a port and g-tube that Ashlyn is having. Before she left last night, his "maybe" of coming to church turned into he "will" come to church....and that he wanted to keep up with how she is doing.

A coincidence that their paths would coincide?? That she just so happens to strike up this silly/fun friendship at this particular time in her life, on this particular week, that would bring her so much laughter....and meet someone who's sister is going through the same thing at the same time, showing her that she's not the only one?? And that she could, in return, have an impact on him & get him to agree to come to church?? I think not.

God WILL use for good, what Satan means for destruction.....and has perfect timing in the orchestration of who and what He brings into our lives when. He's cool like that.

Romans 8:28

We have a hearing test at Nemours and PET scan at Shands today, and Ashlyn's surgery is tomorrow. They will put in her port and g-tube and might begin her first round of chemo while we're in the hospital, depending on all the test and scan results. She will spend at least one night there......and she asked me on the way home last night, "I'll get to go to church Wednesday night, right?" and got so mad when the answer was "no". "But I'll be out of the hospital in time...."

Love that girl. So much. ♥

‪#‎PrayForAshlyn

Ít's the Little Things...

I stopped to get my boys a cpl of things at Target after church today....and I was wanting a pair of jeans to wear to the hospital this week cuz I get cold!! Abt 90% of my clothes are in storage & after debating for way too long abt driving a long way to get a cpl pairs out, I decided I'd end up spending as much or more $ on gas as I wld just buying a pair. Feeling guilty for spending $ on myself, I finally found a pair that fit & we checked out. My jeans that I was having a hard time buying rang up as $7.48!!

I can do that....while leaving my guilt over it on the rack! ;)

 

I saw what ya did there, Lord.  Thank you. The little things do matter. 

 

Give thanks for all the littles....and before you know it, they add up to a lot.

"It’s amazing, the more we recognize even the smallest things as gifts from God, the more we start to realize how present He is in our lives.” - Lysa TerKeurst

 

 

 

Strength for the Weakness

Watching my girl who turns 16 in 20 days sleep on a couch nearby, drinking more coffee....and praying that she'll feel good on her 16th bday, a day she was planning to celebrate surrounded by her amazing friends at camp. If I could have hand-picked her friends, I would have picked the exact same ones she did. ♥ I don't even know what to plan for her :'( ....I was hoping when morning came, maybe ...it wouldn't be true. I don't want it to be..... I want to go to bed, pull the covers over my head and pretend it isn't. Come on coffee....do your thing so I can get movin' on another day.

"Then said Jesus unto his disciples, If any man will come after me, let him deny himself, and take up his cross, and follow me." Matthew 16:24

Can I PLEASE carry hers, too?? :'( :'( :'(

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:19-11

Don't feel you have to comment on this one. Just showing I'm not as strong as everyone thinks I am.

HE is.

 

The Diagnosis

I've been working my way through my own feelings, then through having to tell each family member and thought that it would be at least a few more days before I was able to share an update with the rest of our world....but she wants me to go ahead and post her diagnosis....one that is still hard to say and I wish would disappear as easily as it does when I hit backspace or delete.

Ashlyn has a form of cancer called Nasopharyngeal Carcinoma. It is very rare, esp. in the US....mostly prevalent in Asian countries. Statistically, only 7 out of 1 million in North America develop this type of cancer. Out of that 7 in a million, it is very rare for children to get it. Also very rare for females to get it. She is in the less than 7 in 1 million people to have this type of cancer in North America. :'( The cancer starts in the pharynx and is very hard to detect....symptoms are identical to common cold or virus symptoms. It spreads to the lymph nodes in the neck, which is when ppl find out they have it. When I took Ashlyn in to first get her checked out, she had one lump in her neck. She now has 3. We have an apptmt. at Nemours on Wed...the next step is to do "lots more scans and tests" to determine if it has spread to any other areas.

Most of you, if you know Ashlyn casually, know her as my sweet, quiet girl. And she is. But, as with all of us, her personality is not one dimensional and there is much more to her than meets the eye. ;) She is also my feisty, sassy, STRONG-WILLED one. People often make that "strong-willed" personality trait into a negative one.....and she has never liked the label. But the Bible tells us that we are all "fearfully and wonderfully made"....and I have taught her, and my other two children that Truth. That when He "knit them together in their mother's womb" and made them so fearfully and wonderfully....that included each and every personality trait and characteristic that makes them who they are. I believe that He made everything for good.....and that the traits in us....in them....in HER, that we struggle with the most are the ones that Satan wants to use to hinder us. Because those traits, when given wholeheartedly to the Lord and when they are submitted completely & repeatedly to Him, are the ones that He will use the most to make a difference in our own lives and in the lives of others. I reminded Ashlyn of that tonight, as I looked into those blue eyes that I love so much and broke her heart with news I didn't want to deliver, in the process breaking mine, too. I reminded her that He made her naturally strong physically....and that her strong will was not given to her by accident. He knew the days ahead of her when He created her.....He knew and equipped her with everything she needs to be victorious in this battle, and every battle that comes her way in the future. I reminded her of that and many other things in my efforts to calm her fears, dry her tears and help soften the blow she didn't see coming. I also told her that she already had people praying for her.....from here in Jax and all over the country, who didn't even know her diagnosis yet. That she has so many that love and care about her and to let them love on her and encourage her, because that is one way that the Lord will love her & give her strength to get through this. She wants those prayers, needs that love & encouragement, and with tears and fear in those sweet blue eyes, she told me to go ahead and tell everyone.

I don't want to hit "post". I don't want to put it out there and have it be true. I want to take it out of her body and put it into mine instead. But I can't. And it is. And I have to. Because she needs the prayers........we all do.

‪#‎PrayForAshlyn

"Our Hope Endures" ~ Natalie Grant

♫ You would think only so much can go wrong
Calamity only strikes once
And you assume that this one has suffered her share
Life will be kinder from here...
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
But our hope endures the worst of conditions
It's more than our optimism
Let the earth quake, our hope is unchanged
Emanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope ♫

"Come To Jesus" ~ Chris Rice

Why's this song gotta come on the radio & make me cry??? Makes it kinda hard to see the work I'm trying to do. :'( Blaming it on the rain....that must be why....

The Boy Who Will Become a Man...

I just watched the sunlight fade & finally disappear while snuggled up with my "baby" boy, talking about cats & dogs & rabbits....& hard stuff.  Sigh.  We've been through SO MUCH hard stuff for a while now.  And then, as he continued to chatter nonstop about the way the trees looked against the sky & birds & baseball & the beach & something about his favorite app, I prayed that this boy would grow up to be the kind of man that my heart isn't even sure exists in this world today.

 

I wanted to squeeze those prayers right into him, listing all the traits & character & desire for God that I want him to have, to make them take root so deeply that they would become his. I was glad it was dark and he was preoccupied with his own chatter & that my tears that escaped were absorbed by his thick hair & he didn't notice. 

 

I wish there was a guaranteed method to this madness called Motherhood. I wish that even if the kind of man I'm not sure exists DOESN'T exist, that I knew how to make both of my boys become that kind of man anyway.

I wish, I wish, I wish....and more than that, I pray....

 

 

 

"Carry Me To The Cross" ~ Kutless

"How Sweet The Sound" ~ Citizen Way

When there are no words....there's always music.