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 

Pictures Speak

My sister asked me to send her 6 of my favorite recent pictures of us...I figured it wouldn't be too hard, we had tons...wrong!  As I searched through my jump drive full of pictures and my facebook page, I realized a few things...#1 - I take too my photos with my phone (which aren't the best quality) #2 - my kids are so darn cute (sorry Mommy horn tooting) #3 - Life is flying by!

SG turned one month on the 25th, which also signified a month since we've seen Ellie and Richard.

 

Its amazing how much can change in just one month!  SG is starting to stay awake for longer periods of time, she likes to look at you now - studying every feature on your face, she "smiles", will roll over from her belly to her back and is drinking from a bottle.  She also likes to tease Mommy with sleeping all night one night, waking up once the next night and then two times the next (she must know my need for schedule and enjoys messing with it!)  She still has no hiney needs to wear newborn sized pants :)

 

Noah is finally settling into some type of routine.  He has hit a growth spurt and actually owns high-water pants!! 

 

He will eat a ton if its available!  And he loves to pull his socks up to his knees....which looks great with shorts!  He still melts down from time to time, but he's always been like that.  He is okay with Ellie's hair, since he sees that she isn't scared and having a good time.  He has told me he's afraid her hair will never come back. 

 

Then there's Richard and Ellie...

 

What in their world hasn't changed?  They live in another state right now, Richard isn't working, the only way we see each other is through an iPad, neither have other friends to play with, and they see more doctors in a week then most of us see in a year.  Oh yeah, and she has no hair...but honestly that seems to be the change that has had the least effect, and the one we were the most anxious about. 

 

Oh yeah...me...

 

Biggest change in a month besides losing a bunch of weight (thanks SG)...I'm a mommy of 3, but I only take care of two.  Talk about Mommy insecurities...try not being able to help, feed, dress, discipline, hug or kiss one of your children - especially when they are sick.  At times I feel so left out of Ellie's life, her world is changing and I'm no part of it besides the face on the screen.  But that's so selfish of me, she has her Daddy there and he's doing a great job.  Last week when I blogged, I was searching for scripture related to prayer, and I posted from James.  Then while reading "Grace" by Max Lucado, this week, there was James 5:16 staring me in the face (amazing how that verse just "showed up" again!) 

 "Therefore confess your sins to each other so that you may be healed.  The prayer of a righteous person is powerful and effective." 

So I made a conscious effort to work on confessing my sins to Richard, if anything maybe it would help us feel a little bit closer when there are seven hundred and eighty three miles between us (okay so I typed the number out for the drama of it!).  Richard and I have never been very good phone talkers, he's not the most talkative man in the world, and I hear "tones and attitudes" in everything he says, even if its not there.  So this over a month long time away from each other has been hard, to say the least.  Taking the time to type out a sin, being able to read it and see it on the screen, makes you quickly see the wrong in it.  It has helped me to let go of a few things and opens up the door to ask Richard to pray for certain things for me.  I miss praying with him at night...as much as I used to have such issue with praying in front of him...I can't wait till we get to kneel together again (10 more days!!)

So back to the pictures...I found this one while searching and I couldn't help but smile.

This is Richard and Ellie when she was a few days old.  These two have had a special bond since the beginning, and I see why now.  As much as I get jealous at times of their relationship (sounds bad, but its true) I'm glad they have it.  I worry how she will react to me when I'm there with her, worried she will always want her Daddy (mommy insecurities coming again)...but I just keep praying it will all work out!

Here's the latest on Ellie from Richard...

On Wed we found out our inpatient stay was moved to Thursday instead. We had OT, PT, and clinic appointments earlier on Thursday. At our clinic appointment Ellie had another 'zone out' moment, which in one way was good because there were several doctors who witnessed what I had been seeing. Because of that the doctor increased her anti-seizure dose. She had one more moment when we were at dinner that night but I have not seen anymore since we have been inpatient.

Ellie has been a little more sick through this stay than the last. They are keeping her on Benadryl along with the Zofran to try to settle her nausea. So far today (Saturday), we have done good. Since she's on the extra Benadryl she has to stay in the bed, we've watched quite a few movies today and played with some toys in the bed.

We had a group of visitors came by earlier today from Virginia Tech (about 10 or so). They are a part of a sorority that was taking a tour through St. Jude. Most of them knew about us through the "Turn Tech Pink"  event at Virginia Tech last month. They brought some gifts for Ellie and a framed picture from the Turn Tech Pink event (sent by Charli Zirk, Carly's cousin who goes to Tech and created the event).

Ellie is continuing her quiet rebellion, refusing to talk when the nurses or doctors are in the room. It's somewhat funny to watch.

We will be getting out tomorrow morning (Sunday) and will be with an IV just like last time. She will also be getting the G-CSF shot to help regain her counts. We anticipate on being neutropenic and in need of another blood transfusion in about a week or so.

Can't remember if I included this before, Ellie's next scans are scheduled for May 8th.

Love.Always.

-Rich & Ellie

 

Wondering what my 6 favorite pictures were....oh I'm sure you are!

 

 

"Her children arise and call her blessed;
    her husband also, and he praises her" Proverbs 31:28

 

Prayers, Praise and Pink

~Carly

Because I said so!

Noah has entered the land of "why" and he's driving me crazy (don't tell him I said that because I always tell him not to say things are crazy).  Whenever I am explaining something to him, there's always 20 more why questions.  When I ask him to do something, it is usually followed by "why".  I don't think he's being defiant....he just wants to know why.  I find myself at least 3 times a day saying, "Because I said so"....words I never thought I'd say because I always thought children deserved an answer (guess that was before I had 3 of my own!)  I start out with this story to share another. (its kind of a long story...and I'm not sure if I will explain it the best, but its a story God has really laid on my heart to share with others)

 

Wednesday I got my own attack of the "whys"...I wasn't asking my mom million questions, but I started to question God and beliefs that I've had for years now.  In a conversation with a friend we talked about God's plan for life, that's its not our plan and we aren't going to change that plan.  For some reason unknown to me that conversation, coupled with this beautiful new bracelet that was sent to me...threw me for a whirlwind of "Whys"

 

If God already has a plan for my life, for Ellie's life, he already knows what I'm going to do, why am I praying, if its not going to change anything...why?  I emailed these questions to my friend... and as I typed, I knew my thoughts were wrong.  I had the conversation with Richard later on that day, and expressed my frustrations and my feeling "lost" for lack of a better word....and again as I said the words to him "why am I praying" it was like I already knew the answer in my heart, but it was stuck in there and couldn't get out.  Richard and I have had this same conversation, many years ago, when our journey with Christ was still very new...I couldn't wrap my brain around it and finally God gave me peace that I am just not going to fully comprehend the "why" I should just pray because He said so. (nothing like a taste of your own medicine)

 

Matthew 26:41
"Keep alert and pray. Otherwise temptation will overpower you. For though the spirit is willing enough, the body is weak!"

 

 Ephesians 6:18
And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.

I was reading last night, "Grace" by Max Lucado. I have been so out of touch with my devotionals, daily readings, bible study, everything! So as I was trying to catch up, I read "not  all guilt is bad. God uses appropriate doses of guilt to awaken us to sin. We know guilt is God-given when it causes 'indignation, alarm, longing, concern, readiness to see justice done' (2 Cor. 7:11). God's guilt brings enough regret to change us."  That's exactly the guilt I was feeling after talking to Richard, and hearing myself say those words...it woke me up to see that I wasn't being the person I am called to be.  That I knew better than to question why (especially when I knew the answer all along in my heart).

This whole asking why/why pray/guilt thing was actually perfectly planned too (like God's plan always is)...Thursday the doctors noticed that Ellie was kinda staring off into space and it would take a minute to get her attention.  I was on the iPad with her and saw it happen, but in my mind she looked just like her brother when watching TV...(the house could fall down around him and he'd never notice it)...but they were concerned she may be having a type of seizure. So they planned an EEG for yesterday (Friday). Richard told me all this Thursday (my fall apart day) and I asked him, "so then what do we pray for, if God already knows the outcome"....soon as I said those words that God guilt crept all over me....of course I couldn't just shut up at that point...I kept on, and Richard did his best to try to help and remind me what I already knew.  He told me we pray that she isn't having seizures, and if that's not God's plan, then He has a better one. We pray because we believe that God can take the seizures away if he wants to.  Then I got scared because she wasn't having them before, so what if this tumor is growing, what if something has changed....oh how I let the doubt attack me.

 

She had her EEG yesterday, and as I watched this little girl sit completely still while they attached what seemed like a million little electrodes to her bald head, I wanted to kick myself.  How could I doubt or question a God who has brought us this far opened a million doors for us, changed our lives since the moment He saved us, has provided for us more than we could have ever imagined, and loves us no matter what! (P.S. I heard them say she was the best 2 year old ever at getting hooked up for her EEG)

 

I'm not sure why God wanted me to share this story with you...frankly I'm embarrassed that I cracked like I did.  But I think going through these past few days has helped me see that I'm not perfect and I don't have to be because He has surrounded me with people who will help me find my way back, who will continually remind me of His words, I am blessed by that.  Maybe it will help someone else see that your journey with Christ...is that, a journey, there are many hills and valleys, some days you are on top of the mountain and can help others climb out, other days you are the one in the valley who needs to the help. But never forget to praise Him for every mountain and valley!

 

The EEG showed nothing, but they are still putting her on seizure meds just in case. The doctor was nice enough to talk on speaker phone with me today to give some explanations of why she may be experiencing seizures now, if that's what they are.  Other than that there really isn't anything new to report, besides Ellie's new beautiful look :)

 

 Richard and Ellie are getting their discharge orders as we speak.  Ellie took this dose of meds like the princess she is.  No sickness, just a new little "attitude"...when people come into her room now, she won't talk to them, she will smile, she will do what they ask, but she won't speak....I think its her own little way of "sticking it to them".  I've seen her cave after a couple of times, since everyone there is so nice and will keep on till she answers them! 

 

 

New visitors are on their way down to TN.  My mom and dad are going down for a visit and to bring Richard a vehicle!  Now he will have his own transportation, no more waiting on shuttles!  That is a HUGE blessing!  I know everyone is going to enjoy this visit! 

The Prayer of Faith

James 5:13-20

Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

 Elijah was a human being, even as we are. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years. Again he prayed, and the heavens gave rain, and the earth produced its crops.

 My brothers and sisters, if one of you should wander from the truth and someone should bring that person back,  remember this: Whoever turns a sinner from the error of their way will save them from death and cover over a multitude of sins.

 

 

Prayers, Praise and Pink

~Carly

Hair today, gone tomorrow...

Let's get you up-to-date...

    Most of you know Ellie had to get a blood transfusion last week because her Hgb (hemoglobin) had dropped, but that was expected. She rebounded great after the transfusion and was back to her energetic self by later that evening. She was also neutropenic for a few days and wore a mask anytime we were outside of our apartment. By the beginning of this week all of those numbers had significant turnaround and the only number we were watching was her platelet count. By Wed that number had also started making its turnaround as well, AMEN!

   She had an eye appointment last week which went as expected. She has an issue with looking up with her eyes, something that is consistent with the hydrocephalus she had at the beginning of all of this. She continues to do really well in all of her therapy sessions and her doctors always have new ways of trying to challenge her.

Playground time with Mawmaw and Aunt Kimmie while the weather was nice!

    Ellie is currently on day 23 of her chemo cycle and has been getting doses of Vinblastine every few days. She'll get two more doses, one on Friday and one on Sunday. At that point she'll be done with her first cycle of chemo, three more to go!!
    We start cycle 2 this upcoming Wed the 17th. She'll probably be admitted the night before to start fluids and then she'll start her chemo on Wed. We'll probably be in the hospital for about 5 days to let the meds clear.

Ellie- Pink and Proud!

This is where we hideout when we have time between appointments. We sneak up to the second floor to do some dancing and play with the puppets.

Now the news...

It's finally happening. 
Ellie is starting to lose her hair. 

   I glanced at her brush after brushing her hair one morning and noticed a pretty good amount of hair. At the moment I tried to convince myself that it was probably already there. I ran my hands through her hair easily and caught a few pieces. I tried to do the math in my head to match up the date with the timeframe the doctors gave that her hair would probably start coming out. They said 10-14 days, this was day 14... probably just a coincidence right? As much as I tried I knew that wasn't true. 

    I really wanted to believe that Ellie wasn't going to be like the normal cancer patient, at least as far as her hair. After all she has handled her chemo meds better than anyone expected, she's scored beyond her age in just about all tests she's had.. that means she probably wouldn't lose her hair right? That would be too normal and that couldn't be Ellie. She's not normal...

     My denial is well over now. Now that I clean her hairbrush after every time I brush it. Now that I have to watch when she eats to keep hair off of her plate or out of her mouth.  Every time that I take her hair clip out of her hair it takes a few strands with it and when I take her off the potty I have to wipe her hair off of the seat. Her hair will soon be gone.

    Carly broke the news to Noah sometime ago that Ellie would lose her hair. At first it seemed as he would take it with a grain of salt just as he has most other things. But lately it's upset him quite a bit. He went for a therapist visit earlier today and from what I understand he talked on several occasions about Ellie losing her hair. Noah has told Carly that he thinks Ellie will be scared when she doesn't have any hair. You would think that he would just be upset at the fact that Ellie won't have hair. But instead this not even five year-old boy is more concerned about how his little sister is going to feel.  He's a great big brother and has a great big heart,  just like his mom and just like Jesus. Please pray for him and the conversations we'll continue to have with him. Pray for the moment when Noah  will see his sister without hair (for mom and dad too). 

I truly believe in that time Ellie's strength will shine through and comfort her bother of his fears.

"Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ. Then, whether I come and see you or only hear about you in my absence, I will know that you stand firm in the one Spirit,^[e] striving together as one for the faith of the gospel without being frightened in any way by those who oppose you. This is a sign to them that they will be destroyed, but that you will be saved—and that by God. For it has been granted to you on behalf of Christ not only to believe in him, but also to suffer for him, since you are going through the same struggle you saw I had, and now hear that I still have."

Philippians 2:27-30

Love.Always.

Rich & Ellie

Fly Away

It happened...I knew eventually it would. I was in church this morning, feeling the Holy Spirit with me, feeling sweet in my heart, and Preacher yells "sing an old one!" to the choir. We are in Jubilee this week...he doesn't typically yell at them. The piano started and "I'll fly away" starts playing.  My heart stopped for a second and I closed my eyes.  This was the song I got so upset over last week, watching Ellie sing.  With my eyes closed I could see her sweet face dancing and singing.  Then a smile crept over my face and the tears stayed in my eyes.  I listened to the joy in the song, and that wonderful peace that God continues to provide me came.  And I was comforted with the thought that if something did happen to Ellie, I know where she would be, I believe in a heaven where there is no more cancer or pain.  I know she would be loved by Jesus and that I would see her again. Feels weird to type those words, but those were the exact thoughts rolling through my head.  I thank God for carrying me through those few minutes.

 

Ellie had no appointments yesterday...I don't think Richard knew what to do with himself...besides go find some yummy BBQ!  Ellie got to enjoy some sunshine!

 I can just hear her...."Ta-Dah!"

 

I miss these two so much!  Its only been two weeks since I last saw them, but it feels like an eternity.

Ellie will be done with her first round of chemo next Sunday, just shows you how fast time goes.  She looks like she's grown a foot.  I miss her snuggles, I miss Richard's snuggles....those just aren't things that anyone else can give you.  I cannot wait to hug them again, to be a family of 5, even if it's just for a few days. 

 

This is going to be a long journey, but I am so thankful that Richard and I know the Lord.  Without Him we would struggle with all the questions of "why us" and being mad.  But knowing Him, having Him in our hearts, I feel makes this a sweeter journey.  Helps us find the blessings in every situation, no matter what.  I continue to pray that someone, because of our story will come to know Jesus like we do!  Its one life change you will never regret!

Prayers, Praise and Pink

~Carly

Step away from the jelly beans...

I don't even like jelly beans, but apparently I do...that makes no sense huh?  As I sit here digging through the bowl of jelly beans, hoping that another pink one will show up, I know I'm putting off blogging.  Life isn't crazy, not really that busy, life at home is actually pretty quiet.  The only time it gets loud is when SG wakes up and needs to eat.  My mom has returned home (only an hour away) and Noah, SG, and I are settling into our "new normal". 

I continue to marvel at SG's demeanor.  She's so calm and peaceful, sleeps beautifully, is finally starting to be awake for more than the 20 minutes she's eating. She doesn't really enjoy getting in her car seat, but she sleeps great it in.  She's wiggly as can be when you change her, and she has the skinniest little hiney...(not something she got from me!!)...and her diapers continually slide down!  She "smiles" lots and makes the funniest sounds.  If you had to have a new baby in the midst of all our family is going through...this is the baby you'd want.  To me that's all God's doing.  I've never felt closer to one of my children this young, hope that doesn't make me sound like a bad mommy.  I love my children, I want to spend every minute I can with them....I will usually put up with Noah's touching everything in the grocery store, just to have him with me...but I've never been a "baby" person. 

When I first met Richard's family, I was amazed at how much they LOVE babies.  They would fight over who gets to hold the baby next, and I never understood it.  I remember being terrified when Richard's sister had her son and they wanted me to hold him.  I had never held a new baby before, and never really wanted to.  Of course once I had my own babies, I loved them, but I wasn't one who would hold them for hours.  I never felt that amazing connection until they were a few months old.  Honestly I just felt like a cow for at least the first 2 months...all I was good for was feedings.  I can remember crying constantly in those early weeks.  I think a lot of it was because I had an amazing husband that took care of everything else, so all I really had to do was feed them.  This time around its completely different.  I feel so close to SG, she needs me and right now I'm the only one who can provide what she needs.  I needed this right now, I needed to feel like a mom again, like I was doing something for someone.  I had been struggling a lot with not feeling like Ellie's mom...or at least like I was able to do anything to help her, so its very nice to feel needed again (and not just for milk).

 

 

As much as I love being Mommy right now, I hate that Richard is missing this.  I know he misses it too, I know its for a great reason....but it doesn't make it easier. 

 

Ellie updates....I will attempt to summarize/use Richard's words, there isn't that much to update...which isn't necessarily a bad thing, Ellie is just rolling right along with every treatment and every new visit...she's amazing!

 

Monday (April 1) 

Ellie's week started out a little slow, we had physical therapy first thing in the morning. Ellie wasn't as interested and took a little more motivating than it usually does. Ellie loves to go play with Angela (or student Ally) and is usually out the door saying 'see you later' dad before I have a chance to say goodbye. She went 'grocery shopping' for Dora and then made her dinner. They did some work on the stairs, she is a little weak when coming down the stairs and usually doesn't look where she is going. They kicked a ball around, played on the slide, hopped on numbers on the floor then called it a day.

 

 At the clinic to check her blood wok, her numbers were dropping as expected, but the only real concern was that she was showing a little dehydrated...which is a road we've been down before and we'd like not to go back there.  Richard promised to work hard on getting her to drink, as to avoid having to bring home another "IV leash".  Can you imagine having to keep a two year old within a 5 foot range at all times?!?!  (but he is Super Daddy, so we know he could do it!)

 

You could definitely see she wasn't feeling her best. The doctor said she had "chemo" eyes. Her eyelids were pink/red and she was starting to get some dark circles under her eyes.  

We joined the family dinner tonight at the Target House. They have at least one per month and also have a brief meeting with the attendees afterwards to let everyone know what is going on and to answer any questions. We left in the middle of the meeting because Ellie wasn't feeling so great. We left dinner and ended up snuggling on the couch watching Happy Feet 2. 

 

Tuesday April 2

Ellie woke me up at 7 a.m., or at least that's when I finally gave in to her early morning toe taps on my back. She decided she was going to have spaghetti for breakfast so I obliged (the doctor says to give her anything she wants, OK)!

We caught the shuttle to the hospital and our new visitors (Mawmaw and Aunt Kimmie) met us there shortly after! Ellie was ecstatic and so were they! We jumped right into our appointments..

Right after lunch we headed to E-clinic to check-up on our blood work. God's good grace was with us because Ellie wasn't showing dehydrated anymore. This was kind of a surprise because she hadn't had much to drink in the past day. We were happy to be leaving there without our IV leash. Ellie's Potassium was showing a little low but was no concern to the doctor since it was just barely in the low range. We'll eat a banana hopefully tomorrow to take care of that. 

Ellie's overall health today was good. Her nose wasn't as runny and I let her take an hour+ nap (I let Mawmaw and Aunt Kimmie take a nap too). She was in better spirits through all her visits (I'm sure having some new faces helped that as well). We picked up packages in our mail today and she enjoyed opening them and showing them off to Mawmaw and Aunt Kimmie. She got some new nail polish which I guess I will have to put to use since her toes are almost bare now. 

 

Wednesday April 3, 2013

Our day started early at 8a.m. With an appointment in assessment/triage, Ellie had to have blood work done. We met with Dr. Andrea in the clinics shortly after to review the results:

Ellie's ANC count dropped down to 100, so she is neutropenic. She does have to wear a face ask anytime we are outside of our apartment to avoid infection. We haven't convinced her to wear one yet while we are hanging out in the apartment, but it is inevitable, as soon as we have to leave the room she will have to have one. She will have more blood work on Friday, it is expected her ANC will hit zero before it builds back up. Other than that we are two avoid crowds and sick people

Her Hgb (Hemoglobin) is at 8.3, and is expected to continue to drop. When it is in the 7-8 range she will need a transfusion.

Her platelet count is 141,000 about half of the previous blood work. 20-50,000 is the range for platelets before that will do a platelet transfusion.

She had her first eye appointment today, just looking to get a baseline for where she is. She has had some problems looking up with her eyes, this is consistent with the hydrocephalus she had at the very beginning. In all, there wasn't anything outside of what her was expecting to see given the location of her tumor.

 

Back to Carly....

Some of you may know already that Ellie did have to receive a blood transfusion on Friday.  Richard said she slept through most of it, but once it was over that evening he could see a change in her, her energy level was back up.  So far this week's chemo hasn't had that large of an effect on her.  When we talk on the iPad's she is her normal 2 year old self, with a little bit of an attitude, but what princess doesn't have a little "tude" to her.  You can see when she gets tired...but she always has that beautiful smile that touches your soul and says...its all gonna be okay! 

 

Noah is having a hard time with them being away, he misses them so much.  His normal emotional self becomes overwhelmed easily.  He reminds me so much of myself...when he can't do something right, he falls apart, and then the tears come, and then he misses them.  Richard got Noah and Ellie these great dolls.

 

 

 

Noah has an Ellie doll and Ellie has a Noah and Sarah-Grace doll.  Our Ellie doll has been going everywhere with us lately, and doing everything with Noah.  He enjoys it so much.  Noah wants to go to TN now and doesn't quite get why we just can't get up and go...some days I'm right there with him...I'm 2 seconds away from packing the car and leaving (but the anal organizer in me would never do that!) 

 

Noah's biggest worry is about Ellie losing her hair.  He's afraid she might be scared or that she will look scary.  I gotta admit, I'm right there with him.  I keep waiting for that morning where Richard tells me it has started to fall out, its a weird feeling.  She doesn't have all that much hair to start with, but when I look at those chubby cheeks I just can't imagine it yet.  I'm thankful I crochet and can make her all the hats she will ever need...but I'm anxious.  If you looked at her now, you'd never know she has cancer, but once her hair is gone, it will be pretty obvious.  Not that I don't want people to know...I'm thankful this little face is getting the word out there, that there are these cancers that no one really seems to know how to fix.  There's no answer to how to make it all better...there's ideas and research currently going on, but there's no solution.  Richard has signed Ellie up for all the research studies going on at St. Jude's that relate to her tumor, and how I pray that something will be learned from this little girl that will help out another child along the way. 

 

I could go on and on right now...probably because it is now Sunday morning, and all is quiet.  I started this last night, but had to get some sleep.  I should really go and start getting ready for church, since getting ready to go anywhere seems to take 10 hours longer than it should...another thing I forgot in between babies!  Before I go, I have to again say thank you.  Thank you for taking the time to ready about my family, for caring so much about us, thank you for praying daily for us.  Thank you for sharing our story with others.  Thank you for all the donations, and cards, and gifts!  Thank you for the bake sales, lemonade stands, bracelet sales, and change jars.  To know that we are so loved by our community makes you feel like you can conquer anything.  Without the continued support of you all, this journey would be so much harder.  I pray that you will feel the same love from our family as we pray for you all and praise God for you daily!

 

"And this is his command: to believe in the name of his Son, Jesus Christ, and to love one another as he commanded us. The one who keeps God’s commands lives in him,

and he in them. And this is how we know that he lives in us: We know it by the Spirit he gave us."

1 John 3:23-24

 

 Keeping up with the blog can be hard at times, with brand new baby here, but we are pretty good at quick updates on Ellie's facebook page.  If you'd like to follow along and see some great pics of all the fantastic things people are doing to help us, you can follow along at https://www.facebook.com/ElliesElite

 

Prayers, Praise and Pink

~Carly