I realize that sometimes on mobile versions of the blog, the songs don't always show up.  If you get a chance to listen, please do, they are some of the most meaningful songs to us!  This song has been running through my head for the past few days. 

 

As we headed to the hospital Thursday I knew we should be finding out the results of Ellie's lumbar puncture...finding out if those tumor cells would be gone.  If you remember last time, we were told they were gone...and then the next day told it was read wrong and they were not gone, just a less concentration.  My heart continued to say, they will be gone this time, but my brain kept trying to tell me other things...I did my best to keep those thought out of my head, and thankfully Ellie's OT appointment helped distract me.  Our appointment was almost over and they called Ellie to clinic over the loud speaker...my heart about jumped out of my chest.  They never call us to clinic over the speaker, especially when we haven't even checked in yet.  I joked and said, they can't wait to tell us her fluid is clear!  As our favorite nurse practitioner walked in (maybe we should have another child so we can name that one after her...you have to read way back if you don't get this joke, we named SG after the last nurse practitioner), we heard the words "her CSF is negative".  While I could believe it, I couldn't believe it  The tumor cells in her CSF (spinal fluid) is what put her in the high risk category when this all began and made this a much harder cancer to treat, and now they are gone.  At that moment in time, there was no cancer in my child's body for the first time in 6 months.  I desperately tried to hang on to that thought...but soon my brain started up...and my body's natural defense mechanism kicked in...trying to protect my heart and be prepared   "will it come back? how do we know if it comes back? this is a tricky cancer...can it really be this easy?"  We sent out the texts and posted it to facebook and everyone around us was beyond ecstatic...and for some reason I wasn't.  Once we got home and Ellie and Richard went to sleep, I sat down and read all the facebook messages and texts.  I saw Ellie's face all over facebook with people shouting His praises.  It reminded me of a car accident we were in one Christmas day B.C. (before children).  It happened so fast and it was so scary and so many people swooped in to help, that I didn't really cry about it until much later than afternoon at Richard's mom's house.  He wrapped his arms around me then and held me, and now years later, he still knows how to comfort me.  Hearing that her fluid was clear wasn't scary, but it happened so fast and was then followed by a ton of paperwork to start the next phase of treatment, and then more bloodwork.  Then it hit me...He did it.  He used us to share His power and His ability.  He told me He'd heal her and He did.  I cried and praised.  We had to head back to the hospital that night to start Ellie's next round of chemo.  Richard and I finally had a chance to talk and share and then went our separate ways to our separate couches. 

 

So far Ellie has been through 2 days of this 5 day chemo treatment.  Today was by far the best day she has had inpatient.  She has an appetite despite the chemo, its not an appetite for the room service food, but we'll take it!  The nausea meds are doing great at keeping her eating, and giving her nice long naps!

 

Daddy's with her tonight, while I will enjoy the nice big bed...hope I can sleep without the noise of a hospital :).  We are on the countdown till we get to go home.  Our doctors here are chatting with UVA oncology to warn them...ok prepare them for the princess' arrival.  We don't have a firm "go home" date, but I would suggest not sending anymore mail to us here in TN, since we hope to be gone by the end of the week. 

 

Ellie's treatment plan still stays the same.  We did meet with a radiologist, however at this time, it is not something we will be doing.  As I listened to him tell us all the statistics of the "world" and the lack of statistics about Pineoblastoma, I knew this wasn't for us right now. (ok...while I listened to what I could understand...the rest of it was German to me)  I prayed for God to lead us to the right choices and I believe He did.  Ellie's cancer is responding so well to chemo that we aren't going to mess with a good thing.  Also her age is a big factor.  When we first talked about radiation, I felt sick and scared listening to the side effects that could happen if we started radiation now, but then our little miracle happened!  Thank you all for your prayers.  I truly believe God performed a miracle in her life....He told me he would months ago.  I love that this miracle has brought many people together to rejoice and be amazed at just what God is capable of.  While we still have a long road ahead of us, this is a huge step.  Please continue to pray for Ellie's appetite and good mood, and our travels home...and don't forget to tell Him "Thank You".

 

"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall;  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

Isaiah 40:28-31

 

 

Prayers, Praise and Pink

~Carly

Peace

Peace is what I've prayed for and it's what has been delivered! Before I got out of bed today, I prayed for God to continue to give me peace the whole day through. I also prayed that I would remember to pray for peace when those silly thoughts started to creep in. A dear friend texted me this morning right after I got up saying "peace is the word on my mind".  Before we jumped in the van, I grabbed my devotional to read on the way...something I don't usually do (since driving and reading isn't probably something I should do!) but since Daddy's back I could read.  Opened up and guess what the devotional is all about....you'll never guess...peace! First words I read..."When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire , you shall not be burned, nor shall the flame scorch you. For I am The Lord your God, the Holy One of Israel, your Savior." Isaiah 43:2-3. As I read word after word about peace...I knew he would be with us today.

There were numerous times today I had to remember to pray for that peace, to trust The Lord with all my heart...probably looked like a nut with my hand on my heart talking to myself, but it worked.  Every time it started to get rough or bad thoughts came in, something would happen to distract me and take my mind off of things. We got the phone call this afternoon from Ellie's nurse practitioner (who wore the stickers that Ellie put on her that morning, all day) that Ellie's brain and spine MRI's came back showing no evidence of disease. That tumor is still gone, that spot in her brain still hasn't changed, which leads to believe that it's nothing more that a bruise from her surgery, and there are no tumors growing on her spine. The results from her spinal fluid were not back yet, we are hoping to get the results tomorrow when we go to clinic. Last time she still had tumor cells in her fluid, but it had decreased since the beginning.  We would love to hear that the tumor cells are all gone! 

Ellie has finished all four rounds of her induction chemo and now moves on to the consolidation rounds ...there will be two of these.  Ellie will go inpatient tomorrow night we believe. She will stay in the hospital for 5 days this time, receiving a new chemo med she hasn't gotten before.  Thankfully Richard and I will both be here so we can switch off staying at the hospital over night. I'm not excited of 5 days of fighting over every meal, but I know at the end of those 5 days, we will be heading home. And for the first time all 5 of us will live together in our own house, in our own rooms. It will be interesting to see...but I'm so excited for it! We've been warned Ellie's counts will drop and it could take even longer for her counts to recover, and we might not be able to have all the visitors we'd like or be able to do all the things we want, but we will be home. We may even end up in the hospital at home, but again...we are home.  The anxiety I had about us traveling back home and being far away from St. Jude is gone...and I feel peace.

Thank you again for your prayers and encouraging words. 

Our sign we brought to the airport, incase Daddy forgot who we were :)

Yes, she is a princess

Wheelin home

Never imagined this would be our journey...but I've come to call it our beautiful journey.

Prayers, Praise and Pink....and Peace

Carly

Confessions

He told me he is going to heal her. In a moment a few nights ago while laying in bed and praying with Ellie, He said "I will heal her" I smiled, placed my right hand over my heart and he filled my body with peace.  So why am I not screaming it from the rooftops....why didn't I tell Richard right away...because I'm being a doubter.  I'm worried if I proclaim it and it doesn't happen I'll be wrong, that maybe I didn't really hear it, or maybe I'm crazy...that sounds so dumb.  I've posted before about confessing sins to one another and I have got to let this one go. 

I've had a tough couple of days, spiritually.  I have been reading and praying hard.  And as many great things as I read and am encouraged by...the doubts still creep in.  Not even sure if I can call them doubts...just the thoughts that lead to other thoughts.  The statistics and what other children go through, the fact that there's no real cure for what Ellie has...it just all has been overwhelming.  I guess its hard to look at all the "facts" of this earth and then believe in something I cannot look at, but only hear and feel, and even then no one else can hear or feel what I feel.  My brain still hasn't shut up and with Ellie's emotional roller coaster she's been on this past week, it hasn't been easy.  Thankfully I had the relief of family for a few days. Nothing brings Ellie's spirit up like visitors and plus is was her Uncle Wayne. Ellie loved having friends to love on and play with...not the same old Mommy! 

Our visitors left Saturday and Ellie's meltdowns came back and my crazy brain started up again.  I just felt so confused...why am I still struggling with all these questions and thoughts...I've been praying...what am I doing wrong?  Here's the answer I found, right in my daily devotional I opened that night -

 

^" Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.  If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.  But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.  That person should not expect to receive anything from the Lord.  Such a person is double-minded and unstable in all they do". James 1:2-8

 

Oh hello..."when you ask, you must believe and not doubt"...sound familiar.  I've been praying and asking for help...but where is my loyalty...to God or to the world.  I love the description of a wave...that is exactly how I feel...I get to feeling good, confident in myself and my strength...and then something (the world) drags me back out to sea and my confidence is shaken.  (I also like this description because I am missing the beach something bad this summer!) 

 

So reading that devotional got me all excited that I read the next one too...(I'm so far behind anyway, I could read a weeks worth and still be behind!).  Here's the quote that grabbed me...

 

"Those who abandon ship the first time it enters a storm miss the calm beyond.  And the rougher the storms weathered together, the deeper and stronger real love grows." - Ruth Bell Graham

 

Apparently I have a beach/sea theme going on...but I don't think that's why I loved it.  I loved it because I've always thought this journey we are on is going to bring Richard and I closer, our families closer, others closer to God, but I never thought about my own relationship with God.  This storm is bringing me closer to Him, I am experiencing real love.  This isn't easy. Those nights I can't sleep trying to plan out the rest of my life, I beg for peace and sometimes it doesn't come...and sometimes it does.  He is making me question myself, He is showing me my weaknesses and showing me exactly how to fix them.  Every time I struggle, he leads me to the answer, its up to me to read it and do it.  He is teaching me things that so many people may never get a chance to experience about His love.  Not that I would wish this illness upon anyone, but the lessons I've learned, I wish I could teach everyone.  I should be beyond grateful that my Lord listens to me cry, hears my prayers and plainly says "I will heal her".  People have told me before, she will be fine, they believe she will be healed, I thank them, but in the back of my head there's this voice that says "you don't the statistics".  But this life isn't about statistics, its about living by faith, not by sight, or statistics. 

 

So as I stood in the shower this morning and those silly thoughts tried to creep back in, I put that right hand back on my heart ("So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10) and that beautiful heart warming peace surrounded me.  I continually repeated "trust in the Lord with all your heart" and I made it through that moment.  My wonderful husband (who I will see Tuesday!!) called just at the right time, and I finally shared with him what the Lord told me.  It was hard to explain it in words on the phone, but I did it and now I'm excited to share it with you all.  I'm smiling because He has told me His plan, He will heal her.  He has given me the tools I need when doubt starts to creep in.  He loves me.

 

And He loves this little princess too!

 

So now you know my confession.  Since I have shared it with you, I hope that you will pray for my doubts to stay away.  That I will remember in those rough spots to place my right hand on my heart, and not try to "reason" things out with the facts of this world.

 

Prayers, lot of Praise, and Pink

~Carly

Shut up!

I know that is not a nice word to use, and Noah would be telling me all about that right now...if he were here!  But I can't think of a better phrase to yell at myself right now....we could try "be quiet" but the voices in my head (I'm not crazy, its my own voice) aren't really that loud...just continual.

We are so close to going home I can taste it, I can already envision the dog hair on my clothes!  The closer we get the more I miss Noah, SG and Richard.  The closer we get, the more anxious I get.  I was typing up some info about our journey for our Give Thanks for St. Jude walk page (Princess Strong Team Page) and I was taken back to March when we had to make that decision to bring Ellie to St. Jude.  I was terrified at what that choice was going to do to my family.  I was scared for her to be so far from home, in this new place that we knew nothing about.  I was scared at what chemo would do to her, and worried about how any of us would make it not seeing each other for such a long amount of time.  Now that I look back on that time its seems so long ago!     

Its amazing to see how much we've all changed and grown since back then...I think the only one who hasn't changed is monkey...although he/she has gotten a little dirtier!  Since March Ellie has lost her hair, lost some weight but gained a million friends.  Richard and I haven't lost faith, but we have gained weight...so much for losing all that baby weight!  Noah has gained life experience that I pray will one day impact his view of the world and others. And SG just keeps on getting cuter!  It's funny to think of the things I was so scared of then and see how simple they are now.  That asking questions isn't as terrifying as I once thought it was.  God has continually showed me what I'm capable of by placing me in these new situations. 

As scared as I once was to come here, I'm just as scared to leave.  St. Jude takes you in and wraps you up and keeps you safe.  They tell you where to go and when to be there.  I get to see her doctors usually two to three times a week, and can ask all the questions I want right then and there.  Once we travel home we will still have access to all our doctors at St. Jude and UVA is fantastic, I'm just anxious thinking about all those tomorrows.  Will the nurses there know how to access her, will she let them, what if they don't know how, what if she needs blood, what if I get lost in UVA...that's where the "SHUT UP" comes into play.  I lay in bed at night running the thousands of scenarios through my head, I try to pray and once again I end up thinking about next week and the week after.  I haven't felt like this in a while and its frustrating to not stay in the "here and now".  Richard and I said one day at a time, but lately my brain is fast forwarding and breaking the rules!  So I'm asking for prayer for me, that my brain will shut up and I will be able to listen to what God is trying to tell me. 

If I just listen well enough and open my eyes, He is preparing us to go home.  When Ellie first got to St. Jude she had PT twice a week.  About a month ago she was dropped down to once a week.  Today, she was dismissed from PT, she has exceeded every goal they set for her.  Part of me was sad...but once I look back to where she's come from...

...I couldn't be more proud of her and all she's done!  God is letting me know she's ready.

 

 She is doing great.  Her ANC has been at 0 for longer than before, which makes life a little tricky with a two year old.  She's so good about her mask, but we can't really go anywhere or do anything.  She has become so good at getting her shots, barely a whimper anymore, even helps get everything ready.  Due to her low ANC she hasn't been in the best mood ever.  When she's rested and happy, its all good, as she gets tired or is made to eat....watch out!  Eating is hit or miss...as she is currently telling me she can't eat because "her wings are wet"...(this tinkerbell thing has gotten a little out of control).  She is starting to talk to people again, which warms my heart.  I have even heard her tell people her name...which I then have to translate because most people don't understand "e-ye bane". 

 

Ok so maybe we are more ready than I thought...thank goodness for this blog and all of you who read and pray...I do my best thinking and reflecting while typing.  Richard is flying back in next Tuesday for Ellie's MRI and lumbar puncture.  I cannot wait to see him and I know he cannot wait to get his hands on Ellie!  Ellie will start her new chemo meds next Thursday or Friday and then after 5 days we are home free...well for 3 weeks at least until she has to come back for her next round.

 

Its just another chapter in this journey.  God has always been right beside us, every time I feel down, he gives me peace.  Even when I find myself yelling "shut up" at me...I feel him calm me down.  I have no doubt he will guide us through this next stage.  My anxiety doesn't show my trust in Him....time to let it go!

 

 

Prayers, Praise and Pink (and a little Pixie Dust)

~Carly

The Hat

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