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