We've been pretty low key over the past couple of days around here.  She's tired and cranky...as if two year olds are emotional enough...add some chemo to them!  Some packages arrived so she has been enjoying some new toys to play with and continuing her sticker obsession! 

Today was only a quick OT appointment...but in true St. Jude fashion there was something else going on!  St. Jude has a group called the "Volunteens" and after a little research I found out it's run by St. Jude and they take 15 teenagers...they have to go through an application process and everything...and there's only 2 sessions each summer.  These teenagers serve at the hospital twice a week for a month, planning different activities.  Today was their last day and wow...the stuff they had for the kids!  Ellie got a new watch, some books, a blanket, and a build a bear gift card!  They had it set up where each station was a planet...with an activity to go along with it.  Of course Ellie's favorite activities included coloring...and they gave her a sticker every time she completed an activity, so you know she was on cloud 9!

So as we are enjoying these activities...a moment I've been waiting for happens...in walks a little girl and her mom wearing one of the hats I donated at the front desk.  My insides jumped with joy!  Every bone in my body wanted to go say, "hey I made that hat, it looks so cute on you!"...but God says "no Carly, sit still".  Really...he's gonna make me be still again!  So I sit still thinking they will walk on by and the moment will be lost anyway...NOT.  They get right in front of us...ahhhh.  And I hear, "enjoy it" (how I heard anything in this loud area is amazing....but He was loud and clear).  So I did, I watched this sweet girl play games with her mom and get cool prizes...all while my hat was covering up her falling out hair.  Holy Spirit sent goose bumps all over me.

We finished up all our stations, got our build a bear gift card and I watched that little girl and her mom walk away...IV pole in tow, never saying a word to them.  After we finally got all our loot in the car (I think St. Jude has wagons for all the stuff you go home with...not the kids!) I began to wonder why God had stopped me, why didn't he want me to say anything.  Then I began to ask myself, "why did you make those hats?"  Did I make them so that other people could say "wow Carly, these are great, how nice of you, you did a great job!"  Or was it because I know the joy in having a bright colored hat on your child's head?  Because I know how Ellie glows every time someone tells her how much they like her hat and because I know how cold it is in those hospital rooms and bald heads need to be covered?  God have given me a gift and I needed to use it for those around me.  I am used to going to craft shows and people telling me how great my hats are, telling me what a good job I do, making me feel good.  I get so excited when someone sends me a picture of my hat on a child...but that's all about making me feel good.  Before Ellie got sick, I only made hats for profit and gifts to others, every once in a while I would donate one for something, but it was usually to my benefit.  Today was a new experience for me...no one knew I made that hat, no one praised me for its cute colors, all they knew was that someone took the time to donate that hat.  It was a hard pill to swallow at first, but as I sat with the idea for a while, it kinda made me feel better.  I knew there were verses that went along with what I experienced today, here is what I found...

 Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms. 1 Peter 4:10


 If therefore there is any encouragement in Christ, if there is any consolation of love, if there is any fellowship of the Spirit, if any affection and compassion, make my joy complete by being of the same mind, maintaining the same love, united in spirit, intent on one purpose. Do nothing from selfishness or empty conceit, but with humility of mind let each of you regard one another as more important than himself; do not merely look out for your own personal interests, but also for the interests of others.  Philippians 2:1-4

Beware of practicing your righteousness before other people in order to be seen by them, for then you will have no reward from your Father who is in heaven. Thus, when you give to the needy, sound no trumpet before you, as the hypocrites do in the synagogues and in the streets, that they may be praised by others. Truly, I say to you, they have received their reward.  But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. And your Father who sees in secret will reward you. Matthew 6:1-4

I realize that I am now telling all of you that I made that hat...but I'm not doing that to say "look how great I am".  I'm just sharing an awesome experience of just sitting still and enjoying something good I did, without any external praise.  Sometimes we get caught up in the idea of doing something good, because it looks good, or once we do it, everyone will say just how great we are for doing it...and who doesn't like to hear, nice job!  In fact I can remember "arguments" with Richard where I just wanted him to say "good job Carly" (I bet he is nodding his head in agreement right now!)  But as good as it is to hear nice job from a friend or a spouse...its going to be really great to hear "Well done good and faithful servant."  Again I'm brought back to, it doesn't matter what others think, it matters what God thinks of my actions, and whether or not those actions bring glory to Him.

 

 

We are working on getting Ellie's weight back up again now that we've finished the last of the harsh inpatient chemos! Yeah!!  We just keep on moving forward from here, praying for a healing, praising God for everything he blesses us with daily, and of course wearing a little pink here and there! 

 

 

 

Next MRI and lumbar puncture is July 10th!

We thank you in advance for all the prayers that will be lifted!

 

~Carly

 

Dancing Queen!

Today has just been a gift from God! I know everyday is, but today I feel him in every bone in my body. Ellie was scheduled to go inpatient on Thursday for her next chemo meds...the ones that usually hit her hard.  When I was talking to Richard Wednesday night I said "I really don't want to go in the hospital tomorrow" ...and then we show up Thursday and she can't get her chemo because her counts were too low! Boy did I have a "be careful what you wish for moment!" I felt bad, we'd never had that happen before...didn't even know that could happen.  As I asked what we had to do to get her counts back up, they told me "we wait"...umm do they know me? As much as I've learned on this journey with Ellie, I still haven't learned how to wait very well.  My mind went racing, what if it took her a week to get her counts back up, then we'd be way off schedule...and I LOVE a schedule! I'd never been so bummed to leave the hospital.  Ellie's cranky mood wasn't helping either....possibly because she had been up till after 11 the night before....she just wasn't in the mood for sleeping. We got home, she slept for 3 hours, I crocheted and we all felt better when it was dinner time! We snuggled, watched some La la loopsy and hit the sack! Oh and we prayed! Ellie is getting so good at her own prayers "dear God thank you for daddy not feel sad and Noah not feel sad, thank you for all the doctors and all the nurses...any body else? And please help take my cancer away! Amen". She whispers them..too funny.

I should have known what a good day it was going to be when Ellie got up on her own and woke me up, she usually just lays there until I poke my head in. She ate and smiled.  As I rolled the suitcase to the back of the van again...I didn't know what to expect. We got to St. Jude and there was lots of parking open (that hasn't been the case recently as we've been hiking a few days through the lots!) we checked in and the registration lady told me, like she does every day, just how blessed I am (I know...but it's nice to hear it!). After we got her blood work done, we had to wait (you'd really think I'd be much better at this waiting thing by now).  As we went to get her snack bag, there was a group doing arts and crafts with the kids...that happens a lot around here.  As we walked up smiling faces were greeting us...we couldn't pass them by! They were with an organization called "Fitness for a Cure" and they raise money for St. Jude.  They have a performance team who had traveled from Boston to visit.  As we made our picture frames, Ellie loosened up...there were stickers involved so she was on cloud nine.  Two frames later we still haven't gotten her snack bag yet...we headed that way when more friendly faces stopped to talk to us from this team.  Ellie was taken away by some of the girls on the team and off she went to make another frame.  I was left talking to some wonderful women. I got to share our story, I got to share just how God has lead us down this path.  I easily share my faith when I type, but sometimes in face to face conversations, I get nervous (worried what they will think) but today was so easy. 45 minutes later, we still don't have our snack bag, but Ellie is actually talking to people, we have a beautiful blessing bracelet, a necklace and an invite back to the noon performance. Biggest blessing, the time flew by waiting for her blood work results! Oh and she requested they sing and dance to Jingle Bells which they happily did out loud!

So Ellie's ANC didn't just go up a little...it nearly tripled.  Again I watched this little girl start chatting and being silly with her doctor.  We were a go for chemo...so we went to get our last meal in before going upstairs.  She chowed down on a hot dog and we made it just in time for our new friends performance. She didn't sit in her seat long, up dancing she went...she even handed monkey to the girl beside us so she could go dance.  Tears welled up in my eyes...this is my daughter, care free, full of energy and dancing feet, just like her momma! She wasn't nervous, she didn't hold back. As funny as it is to watch her not talk to people on purpose, it's sad at the same time, that it has gotten to this point. But today there is a change in her...she has even spoken to her nurse once we got upstairs. 

I just can't thank God enough for today.  I needed today, I needed to smile and see my daughter smile.  I needed to not feel like my child had cancer today and she was just a 2 year old with some sweet dance moves! I needed to feel God's presence all around me.  The next couple of days are going to be tough, so I am beyond grateful (and shouldn't be surprised) that my God knew exactly what to do and when to do it.

"Wait on the Lord; be of good courage, and He shall strengthen your heart; Wait, I say, on the Lord!” Psalm 27:14

Prayers, Praise and Pink (from in the big house)

Carly

Can't exactly get the video of her dancing from my phone to the ipad, but if you go to Ellie's Facebook page, I'll post it there!

Lesson Plans

Noah had an amazing birthday thanks to many different people.  It first started a few days before his birthday, our friends at Habitat for Hope got him an amazing birthday cake with Jake on top...oh so yummy and huge!  He was in love!

Then on his birthday he got to go swimming at Nana and Grandaddy's hotel...who wouldn't love that!?!?  Got to see some racecars as well and then came back to "The house for 5 people" and opened a million birthday cards from friends all over!

With the excitement of Noah's 5th birthday also brought closer the reality that they had to return home to VA.  As the day grew closer nerves were on the rise...while we didn't want to think about the next 6 weeks or so apart, we knew it was coming.  I was holding it together pretty well until Noah started to fall apart.  As we went to take our family photos, Noah began to cry...not little tears...big, can't breath tears.  He was so sad...telling us how it wasn't fair that he had to leave and that TN was the funnest place in the world.  After promising him ice cream when we got home (nice bribery right)...he calmed down and then asked "which home".  My heart sank for him, what a crazy life he lives right now...but I'm thankful that for the most part he goes along with it, without much of a complaint.  Now that he's back at home, he's enjoying seeing his friends again and his piggy bank (not sure why he missed that so much but I hear he kissed it 50 times when he got home).  I hope that the routine of home and Mrs. Kelly will help him feel a little better.

Ellie and I have tried to settle into our new life together, although we still have Nana around...so we aren't completely on our own yet.  We have started round four, which is the last of these current meds.  When we started this way back in March I had no idea chemo consisted of so many different meds, honestly I just thought it was all one big medicine named "chemo" that everyone got.  Not so true.  Ellie's treatment consists of 4 rounds (28 days each) of the same medication combination (4 different chemo meds).  Once we finish round 4 she will start 2 more rounds (28 days each) with different chemo meds.  The exciting part about the next two rounds is that she only gets medicine for a week, and then doesn't get any more meds for another 3 weeks.  We are most excited about that 3 weeks without meds, because that means we might be able to come home in between those two rounds, as long as the doctors at home are on board!  That might mean for the first time all 5 of us could be together under our own roof!  How exciting...yet scary!  Its kinda like taking your first child home for the first time...what do you do with them?  We'd be so far away from the doctors that see Ellie almost every other day, that know exactly which pupil dilates which way, that know she's not going to talk to you but she will take stickers from you, that know the correct tickle spots and know that Ellie will always hold the thermometer cord for them. 

These past couple days "on my own" have really caused a lot of self reflection.  I remember walking into this hospital a month ago, scared to death and completely overwhelmed.  So afraid I wasn't going to "do it right".  Really I was afraid someone would think I was doing something wrong.  I have struggled for a long time with the fear of what others think of me.  It's a dumb fear, and as much as I tell myself it doesn't matter...I can't seem to get over it.  So as I laid in the hospital last night...this train on thought came rolling through...and once again I realized something else I've learned...I'm learning a whole lot...hope I hang onto this knowledge. 

One of my first days at St. Jude as we sat waiting for an appointment I watched a lady begging her son to take his medicine.  She gave him a million chances, threatened to take things away, argued with him, bribed him...I'm not sure if he ever took it or not...but I remember thinking..."I will never do that...my daughter will do what I ask her or else"...(not sure what the or else was).  Now I laugh thinking back to that day.  I do everything short of a Broadway musical to get Ellie to eat...although my singing may be good enough for a show.  I threaten to take her monkey away and she hands him to me...she has even said she needed to go to time out to avoid eating....reverse psychology doesn't exactly work on her.  Its amazing how quick I was to judge that woman weeks ago when I had never walked in her shoes.  Here I am terrified what others will think of me and I'm busy being the person I am worried about (does that make sense?) 

I also dislike having attention drawn towards myself...probably again because then I worry what others will be thinking.  No better way to teach you to get over these things then having a bald headed child.  As we walked into Chic fila the other day and I watched the heads turn, I had to giggle to myself...and a song popped into my head.  "He's not finished with me yet"

Every time I think I have learned what God is teaching me in this journey we are on...he decides its time for a new lesson.  This week's lesson is all about strength.  Daily God has been giving me new challenges to show me just how strong I am. From little things like Ellie's dinner not showing up from room service and having to call to check on it (yes...I stress that because I don't want the room service people to think I'm a pain) to sending my husband and children back home and leaving me here.  With Richard not here I am forced to ask questions when I don't know the answers (which again I normally don't do because I don't want them to think I'm dumb), instead of relying on him.  As I argue with myself when struggling to pick up the phone to make that phone call or ask that question, I keep saying to myself "only He matters".  He's teaching me that the only opinion that really matters is His.  That I need to live my days thinking "Would God be proud of me for this" instead of "what will this total stranger think of me if I don't know my way to the eye clinic".  He is continually teaching me my children are watching me, especially Noah...and that sometimes I'm going to have to hold it together because Noah needs to see that I'm okay, even though I want to fall apart.  I think strength is something God is very proud of.  It takes strength and restraint to not judge someone or think ill thoughts of them.  It takes strength to not verbally express that judgment to someone else.  It takes strength to just be strong (duh) to hold your world together when you'd just like to let it fall apart.  It takes strength when you are surrounded by sick children to not let your brain go wandering down the paths it shouldn't and remind yourself that God's got this, He has a plan for all of us and he won't let us walk it alone. 

 

While I miss Richard and the kids terribly, I'm interested in what is next on God's lesson plan for me (even though it's officially summer break...yeah to all my teacher friends!).  I can't say I'm thrilled about the return to iPad phone calls, but I'm excited that we are nearing the end of this first part of treatment.  This hasn't been the easiest road over, but we are continually surrounded by the help we need and give the strength that only He can provide. 

        

“Judge not, and you will not be judged; condemn not, and you will not be condemned; forgive, and you will be forgiven" Luke 6:37

 

 

 

Prayers, Praise and Pink

~Carly

Too many to count

"Even if you are experiencing tough times right now, you still have blessings to count and blessings to share.  So ask yourself this question: How can I glorify God today? Your Heavenly Father has given you talents and opportunities that are uniquely yours." - What if your blessings come through raindrops devotional by  Laura Story.

 

I read this the other morning in a rare moment of silence.  SG has been sleeping beautifully...sometimes till almost 8am.  Richard can always sleep in and Noah and Ellie are in the same room, so as long as Noah is sleeping in, Ellie will stay put.  I sat with my devotional books and bible around me and read.  It had been a while with no excuse...that darn candy game that I get stuck on the same level for a week takes control....and I find myself playing that for an hour when I could easily take that time to read a devotion or a chapter from the bible.  It felt good that morning, I felt that beautiful peace God provides. 

 

I find it fitting that the first day I ever open this book, this was the first devotion.  I always loved in church when they would sing "Count your blessings"  I would look at my kids and my husband and count...1...2...3 (SG wasn't born yet, before you say I forgot her!).  As I read, I thought about my talents and opportunities God has give me.  God has given me the talent to write and through Ellie's illness he has give me the opportunity to share my writing with many people.  I try, when I blog, to not only update on Ellie and our family, but share with you the beautiful things God does in our lives, that is my way of glorifying him.  I'm not as good at verbally speaking his praises, my words get all tangled, but today I wanted to take a minute to share my blessings with you and challenge you to count all your blessings, even if you are in the midst of a tough time. 

 

So here goes, in no particular order!

 

My salvation - it has changed everything in my life, Zion Baptist - for loving my family and teaching me about a church family, our jobs, my co-workers who donated the sick time to allow us to still have some income right now, Richard's job for allowing him to stay with us for a couple more weeks, the sunshine, music, dancing, cartoons - they are currently providing this time to allow me to type, St. Jude Children's Hospital and everyone who works in it - for bringing a smile to our family's face daily, all of Ellie's medical team - for not just seeing her as a medical record number or a participant in this research but as a child who they love, Target - for providing a calm place to shop, crocheting - for keeping me calm and providing another source of income, princesses, Facebook - it is amazing how many lives we are allowed to touch because of social media, this blog, monkeys (pink and George), Habitat for Hope - for not just providing us with a place to live right now but providing us with fellowship and friends while we are here, blankets, pictures, smiles that light up a room, hugs, snuggles, hair bows, hats, flowers, mail - when you are so far away from home it is such a welcomed sight to see a envelope with your name on it, friends, baby dolls, chemo, nausea meds, tears, laughter, sisters, parents, brothers, cousins, cheese sticks - Ellie's current favorite, trail mix - we all know my love, nail polish, stickers, Veggie Tales - for the lessons they teach the kids and myself, the students I work with, teachers, my health, food, iPads

kkkkkkkkkkkkkkkkkkkkeeeeeeelliemmmmmmmllllllllkkkkkkkkkkkkkkkkkkkkjjjjjjjjjjjjjjjjjuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu

 00000100000000000000000000000000000000000000000000000000                                                      00    11

 

(Sorry can you tell someone is sitting in my lap while I type?!?!? tv doesn't work so well for occupying her!)

 

Cancer - yes I'd rather not have experienced it in our lives, but look at all the blessings that have come out of it.  When does a family every get to spend as much time as we do together?  Sure by the end of the day we have spent a little too much time together, but that's why bed time is so important!  Noah's heart is growing just by being around the hospital and the town we are in.  He's learning just how many sick children there are and that they aren't any different then we are.  He's learning what homeless means...you might chuckle at first, but in little Orange, VA he would never know what that is, his eyes are being opened to a whole other way of life.  He has seen his Daddy give money to the man on the side of the street which is a lesson his Mommy still struggles with, but it produced questions that allowed us to share God's word with him.  Because of cancer I have been given the privilege of sharing our story with others, I am being allowed to help others who are on a similar journey, or on any type of journey.  Cancer has allowed us to meet some fantastic people.  Cancer has brought my family closer together, it has put priorities in the right place, it has taught us to appreciate today and only focus on today.  Cancer has allowed us to share the love of God with so many!

 

My husband - where do I begin??  What an amazing transition from that cute boy who worked at Old Navy to the amazing man of God I see today.  He is a huge blessing in my life and one I do remember to thank God for every day.  He is so good at pushing me to be my best and dealing with me when I get mad at his pushing!  Believe it or not, I just can't find the right words today to describe him and how much he blesses me everyday...which is why I'm letting him sleep right now :)

 

My children - what other blessing teaches you to love others more than yourself.  They have taught me patience and fun.  They remind me I don't always have to be so serious and imagination is amazing.  That a family can be wherever you are, not just in your house.  Although Noah continually says he misses home...this is home right now.  Our family has slid right into a one bedroom apartment like its nothing.  They are so incredibly flexible (something I'm not very good at being...but learning to be). 

SG reminds me to smile, even at little things like gas! 

Noah helps me be patient every day and has shown me just what a brother is meant to be!

Ellie Marie...she shows me what true beauty is.

Any time I start to complain or whine, I think of her.  I think of the medicines going into her and what they are doing to her body.  I think of her strength, her ability to smile (when she feels like it).  I think of all she's been through and I stop complaining.  Maybe that's what I've learned the most, stop complaining. It doesn't do you any good.  Stop holding a grudge (such a hard one for me) this also does you know good.  Stop wasting your valuable time and life being mad at someone.  I catch myself getting mad at Richard for stupid things like making me go into the grocery store by myself, or not agreeing with me about getting the wheely backpack for Ellie.  I waste minutes and sometimes hours being mad at him and not talking to him or thinking mean thoughts about how he's done me wrong...and what is the purpose...nothing.  It doesn't solve anything, it doesn't prove any points, it just wastes time....and that's something we don't know how much we have.  None of us know how much we have.  I have to remind myself, God has forgiven me for so much.  He doesn't stop talking to me when I mess up.  He doesn't turn his back on me when I don't show His love like he wants me to.  He has looked past all the sin in my life who am I to not forgive someone because they don't agree with me (kinda silly).  I thank God for every minute in this life and all the blessings and promises in it.

 

Psalm 103:8-12 The LORD is merciful and gracious, slow to anger and abounding in steadfast love. He will not always chide, nor will he keep his anger forever. He does not deal with us according to our sins, nor repay us according to our iniquities. For as high as the heavens are above the earth, so great is his steadfast love toward those who fear him; as far as the east is from the west, so far does he remove our transgressions from us.

 

 

 

Prayers, Praise, Pink

~Carly

Dancing in the Rain

It rained a lot today...and I'm pretty sure for the first time ever in Noah's life he wanted to go play in the rain!  My straight laced, non joking kid is starting to live a little on the edge!  Of course Richard obliged and out they went.  Princess Ellie wasn't too happy about it, she desperately wanted to go play too and wasn't too happy when Mommy said no.

She did spend most of her afternoon today in her princess dress. She got this dress for her birthday in January, and four months later she is finally wearing it.  It's hard to remember our lives before January 26th. Some times the doctors or therapists will ask "did she used to" and I can't remember.  The OT was working on getting Ellie to take her own shoes off today, and I kept thinking to myself...could she do that before?  Richard asked the other night if I thought our lives would ever return to normal...I had to giggle.  I have not a clue what normal is anymore.  No, our life will never be what it used to be, and honestly I can't say that's a bad thing.  I look at all the good that has come out of our "new normal" and I'm proud of us.  Sure I'd love a day back in Orange, VA heading to work, taking Noah with me, getting texts from Kelly with what Ellie has done to get herself in time out for the 5th time that day.  Coming home to Ellie's "Hi Mommy!", letting our crazy dogs out and figuring out what to make for dinner (ok so I don't miss that part so much).  Waiting for Richard to come home to give me some type of relief!  I have no doubt will have those days again, just with a whole new out look on life!

Ellie made it though the first meds of round 3 of chemo and I made it through my first inpatient visit.  I was pretty scared...okay not scared,just afraid I wouldn't do something right.  When even the registration ladies are telling you how amazing your husband is, you start to wonder if you will measure up.  I think I did pretty good!

I am very thankful though for all the movies to chose from, even though she wanted to watch the same ones over and over!  And when Mommy got boring, reinforcements would show up!

Talk about the "new normal".  Noah would come in, kick his shoes off and jump in bed with Ellie (maybe he was just excited about the movies too). 

She handled chemo like the pro she is. She continues her refusal to talk to any hospital members, but no worries, Noah talks to them all for her....everyone knows when Noah's birthday is!  It was nice to see her finally open with her PT and OT.  As she went running down the hall with her PT, IV pole rolling behind her, I couldn't help but think back to the first walk down the hallway in the PICU at UVA after her brain surgery, her Daddy holding her hands, the PT holding her hips and only going a few feet...now she is running the length of the hospital.  Thank you Lord for all the amazing people who have helped her get this far!

Ellie had a follow up appointment at the cardiologist because her EKG showed some left ventricular dysfunction (LVD).  The night before her appointment, Richard wanted to pray specifically for her appointment, and we did.  The next morning he wanted to pray with Ellie and I again before they left.  I started to wonder if he was really stressing this appointment, I wasn't.  So after they left for the appointment, I started to google LVD and then I started to get a little worried...I should really know by now to not google things...but I'm hard headed.  Maybe Richard had done the same thing and that's why he wanted to pray so much for this appointment...or maybe I have become I have become a little too relaxed in my prayer life.  I think I've been taking for granted all the blessings the Lord has put in our lives...I'm doing good at praising him, but maybe forgetting to focus on specific things or just thinking well "God's got it"...no need to pray about it.  Anyway, Ellie's appointment found nothing to be concerned with, the cardiologist said he would barely categorize it as mild, they will continue to watch it and follow up with her after round 4. 

Noah is loving the four boys that live above us!  He is loving the outside!  He is also missing home, he has said a few times that he wishes we could all go back home together.  I can't blame him, I'd love it too!  But we couldn't be in a better place at this moment.  I truly feel that having our whole family together is helping Ellie so much.  We still struggle with getting her to eat some days.  Many people have recommended certain diets to us, I would love if they could recommend how to get her to eat period.  Some nights it's battle...and how hard do you fight?  I feel like the wicked witch some nights, and I can't always tell if she feels yucky or she's just being stubborn...or she has that fear of getting sick.  My girl is taking medicines that I will never even begin to know how they make her feel and now I'm trying to force her to eat something...anything.  She's so young to even begin to try to express what she wants to eat or how she's feeling, or to understand the importance of her eating and drinking.  Foods she normally loves don't work and what works today, doesn't always work the next day.  Sibling encouragement and song and dance sometimes work and sometimes she could care less what we bribe her with or how loud we cheer her on.  Then you have Noah who clears his plate and wants you to sing for him...oh how entertaining we must be to watch!

Got totally off track to the title of my blog...there's a common theme to our lives...we dance.  I grew up dancing, I love music and I love to dance.  No matter what is going on in this family, we are always singing and dancing, even if its in the "rain".  We can find a song for any occasion, or make one up...Richard is a pro at made up songs for the kids.  Ellie has inherited that love of song and dance.  Not one hour after being unhooked from her chemo drug she was in the hallway dancing...well we all were, but if she wasn't there Richard and I would have just looked crazy.  Her spirit is unbreakable.  After all she has been through she continues to dance, we continue to dance...we continue to sing and we continue to praise Him.  We are blessed.

Prayer, Praise and Pink
~Carly

Doors

Not sure where to begin, the past 6 days have been a whirlwind of emotions.  We made it!  After 13.5 hours in the car, Noah, SG, my mom and myself rolled into our new "home".  The kids did great in the car, Noah only asked "are we there yet?" a few times and SG did amazing for being stuck in a car seat for that long.  I became a great contortionist...keeping a pacifier in her mouth while still sitting in the front seat.  I was calm until we hit about an hour out...and then the excitement was more than I could contain....as the GPS counted down the minutes and miles, I could not wait.  As we pulled in the driveway, I saw my pink princess and handsome husband waiting.

As we we driving I couldn't help but think of all the doors that God has led us to.  When Ellie was first  diagnosed we were faced with a choice for her treatment, choose DC that was much closer to home, or Memphis...13.5 hours away, where we know no one.  I had no idea how to make that choice, so I continually prayed that God would open whatever doors we needed to walk through.  DC took a week to contact us, and St. Jude had called us the next day...door number 1.  Being 30 some weeks pregnant, I couldn't travel with Ellie, so Richard had to go, he only had enough vacation time to be paid for 3 weeks, I only had enough sick days to be paid for a week....then door number 2 opens and my coworkers donate enough sick days to be paid for 12 weeks.  Then the hearts of so many opened and donated to our family, that being without Richard's paycheck has not been a burden.  The biggest door lately, opened so last minute...that I can't believe planner Carly didn't have a heart attack.  We were blessed with finding an organization that helps families like ours with housing and many other needs.  Richard got in touch with Habitat for Hope on a Thursday, and within just a few days he was moved in to our new "home".  We don't have to split our family up anymore while we are all in TN together.  Once again...I had a plan in mind of what we were going to do...we were prepared to get a hotel room for the duration of our stay in TN since we could not all stay together in the Target House....and then once again God said "I got this, stop stressing".  Our new "home" is so much more like our home in VA.  We are surrounded by woods, there's 4wheelers parked outside and a great playground for the kids.  

There has been quite an adjustment for us all.  We haven't lived together for 6 weeks and we have a new family member!  It didn't take Noah and Ellie long to start arguing over toys.

 And funny enough, it was music to my ears to hear them fighting and they laughing together.  They haven't missed a beat, Noah continues to be the bossy and loving big brother, and Ellie is still "running the show".  SG is LOVING her Daddy and he is loving her!  You can often catch the two of them talking to one another and ohhhing and ahhhing together.  She was sleeping through the night when we got here, but I think her LOVE of her Daddy is keeping her up at night when she wakes up and wants to eat.  Hopefully we will work the kinks out soon enough. (But I am loving these huge smiles she has found!)

Ellie is also loving being a big sister, she's great at letting us know when SG is crying and that she needs a pacifier.

Having my mom here has been great, especially as I attempt to learn the hospital and it's routine. She has been able to take Noah to her hotel so he can enjoy swimming, instead of sitting at the hospital all day....and SG just sleeps through it all!  Its pretty overwhelming to walk around with Richard and Ellie and they know where everything is and what to do everywhere.  I have met some of the nicest people as well and I'm amazed at how much they know about our family.

How appropriate the first craft I got to do with her was a crown :)

As most know Ellie had her MRI on Wednesday to check on her tumor and her spinal fluid.  It was a long day, especially since Ellie couldn't eat all morning, and that lead to even more dramatic meltdowns!  Richard and I spent the hours waiting for her in the sunshine, just enjoying being a couple again.  It's been easier to be Mommy and Daddy again than I expected!  Ellie's doctor called us that night to let us know that her MRI showed no evidence of disease in her brain and on her spine....which we were super excited about!  But her spinal tap info wasn't back yet, that's the part we really wanted to know about.  As we went in the clinic the next day, we got to see the pictures of the non existent tumor in her head...which was very exciting to see, but we still had no spinal fluid results. As we walked down the aisles of the grocery store Richard's phone rang...it was the doctor.  She was very excited to report that Ellie's fluid had come back negative for tumor cells.  We cried in the middle of the store and forgot everything we had come for!  Of course everyone around us was beyond thrilled, as we were too. There 's not much research on Pineoblastoma, but having tumor cells in your spinal fluid puts you on the high risk category for treatment, so not having them would be great!  We soon learned that the pathologist took back his original findings, yes there are not as many tumor cells in Ellie's spinal fluid, but they are not completely gone.  Hearing that was like your balloon deflating...we were still excited about the results, but it was a bit of a let down. I think I was so worried about everyone who loves Ellie so much, I didn't want them to be discouraged.  The doctors were surprised when the results first came back because no ones tumor cells are gone within two months...but they were just as excited as we were and safe to say just as let down when we found out the results were changed. I know that Ellie taking part in this study will help others, but I was so excited at the thought of maybe God was going to use her to unlock a door for others with this same tumor.  Maybe that still is his plan, I've stopped trying to figure it out, because I'm finally learning that once I think I have a plan in place, He shows up with a much better plan than I have.

Today we got to open the doors to church, as a family of 5.  There is a church here that our church has a connection to in a round about way.  They reached out to Richard when he first got here and we were finally able to go today. It was so nice to be there as a family, meet so many people who had been praying for us, and have a moment where the whole church came together to pray for Ellie. The pastor preached on love...so appropriate for our family. About loving your spouse and your children.  Being apart for 6 weeks helps you to appreciate everything your spouse is and does (sad that sometimes it takes a crazy situation to make this happen). 

The next door I will have to go through is Richard heading home and Ellie and I here alone...which I can't say we are alone any more, I feel like God moved us into this apartment to help me through the next couple of months. We will once again have to split up our family...well at least that's what I think will happen...but God does a really good job of proving me wrong! So I will lean on Richard and I's vow to live in today, to enjoy every moment we have now, to not worry about next month, next week  or next year.  To love with all we have, and continue to praise God for the work he's doing in us and through us.

Prayers, Praise and Pink

- All 5 Blaine's

Move over Jelly Beans!

Hello Trail Mix!

In an effort to not open this jar...I'm blogging :)  I promised I would not touch this till we leave on Tuesday...but it's staring at me.  My last jar only lasted me 3 days, so I'm really hoping this one can hang in till our road trip, and then I can eat it...for breakfast!

 

Noah and I are anxiously counting down the days and trying to finish up last minute tasks before we leave for Memphis.  One surprise addition to our "to-do" list was an interview with a local news station.  Richard assured me it would be "just like talking to the newspaper people"....yeah just like that, except there's a camera, and they are in my house!  I was excited, yet a wreck.  As we rushed around trying to make my house look like clean people live here, I felt the anxiety creeping up further.  I used to have a really rough time with anxiety, I've gotten a lot better, but some days no matter how hard I try or what I do, I can't keep it away.  I came in the kitchen to turn the radio on, music can calm me like no other.  The radio station was discussing prayer and with the national day of prayer right around the corner, they had some people calling in with prayer requests.  I didn't hear the lady's whole story, but the radio D.J. began to pray for her, so I stopped cleaning and prayed with them for a moment.  The D.J.'s prayer went straight to my heart, it was almost the same prayer I pray every night.  That God would heal what no doctor or medicine can heal. That through His healing other's would see what God is capable of.  He said some other beautiful words, that I can't remember, but in that moment I felt Holy Spirit right there with me, holding me tight, telling me "This one's for you".  Then this song played

Always the right song...I was calm, I could breathe, I could continue to pretend like my house was clean :) 

I think the interview went well, Noah tried to be a camera hog, Ellie and Richard were on the iPad.  Ellie of course wouldn't talk to the reporter, or me if she could see the camera man or the reporter.  It makes me sad some days that my sweet, happy-go-lucky girl has shut down to strangers.  Reporter Whitney, even tried to talk princesses with Ellie, and all she got was a smile.  No one could ever know the workings of a two year old brain, so I'm not sure why this new silence is occurring, but I sure hope one day my chatter box returns (never thought I'd say that!)

 

As Richard and I start to iron out some details of our next 3 weeks together, I am excited.  Not just to see them again (which I can't even describe my excitement of that one), I'm excited about the doors that God is starting to open for us once again.  I'm excited and encouraged by all the lives Ellie is continuing to touch.  I'm excited that my family is continuing to be used to show just how much God can do, and just how far God's love can carry you.  I'm excited at our growth as a couple and as a family.  We can't plan out the whole summer yet...which we all know I would LOVE to do, but we are making some progress. 

 

Once Noah, SG, myself and Nana (my mom) get down there, we can't all stay at the Target House.  There is a strict 4 person to an apartment policy, and even though Ellie has tried to get in good with the director, we still have to follow the rules, and if you know me, I have to follow the rules!  So we will be split up again, but just at night.  Thankfully Nana has gotten a hotel room and will gladly take a kiddo with her....hope she's ready for that 4am feeding, because I am SOOOO ready for a full night's sleep (and she thought she would take Noah....surprise!)  Our next big day is May 8th, that is when Ellie will have her MRI and spinal tap.  Those will show what is going on with her tumor.  We ask that you continue to pray, we would love to see a tumor that has disappeared, and we know that if it's God's will, He can make it happen, and if it's not His will, He has a better plan than we do.

 

I have to once again say thank you to everyone.  Some days I feel like I just can't say it enough.  The amount of support from complete strangers is "awesome" (as Ellie would say).  Not just the financial support, but the cards of encouragement, the gifts for our children, the meals provided, the pictures sent and the prayers prayed.  I cannot wait to one day tell Ellie what she's done, how many people she has touched and what the strength that God has given her has taught other people.  I am proud to call my daughter my hero.

Love you Ellie Lou!

Prayers, Praise and Pink

~Carly