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

 

 

 

 

 

 

Blaine's - Party of 5

My house is now quiet.  Sarah-Grace (SG) is doing what she does best, snoozing and Mom took Noah to my in-laws house to celebrate Easter.  This past week has been amazing to say the least.  My last blog, I wrote about Noah and his questions about Ellie and just how much he missed his Daddy and Sister, I also mentioned how frustrated I was with Richard's communication that day.  Well little did I know Super Daddy and Princess Ellie were making a 14 hour journey home.  They were in fact being escorted home by our Preacher, but not to the Target house in TN, to our house in VA. 

At 12:30am on Friday I had just fallen asleep when my dogs started barking like crazy.  I was so mad, because #1, I had just fallen asleep and #2, I hate when my dogs start barking when I'm home alone.  I yelled for them to stop (like that ever works) but they kept on.  As I rolled over in bed and looked out the back window I saw headlights across my back yard...panic...we live in the boonies...cell phone in hand, I crept down the hallway to peak out of the window.  All I could see where headlights in my driveway and people walking up my sidewalk carrying a baby.  First thought...why are they bringing their child here...I can't help them...why me?!?!  But in true scary movie fashion I still opened my front door...looking back on all this I still can't believe I didn't go crawl in bed with Noah and hide.  Walking up my sidewalk was Richard holding Ellie, my Preacher and his wife.  I didn't know what to say, I don't even think I cried, I just grabbed her and hugged tight and she said "Hi Mommy, we home!"  A million questions went through my head...wondering if they ran away, did St. Jude's know where they were....feeling dumb for being so mad at him for not talking to me that day...but so happy I had her in my arms. 

At 1:00 in the morning we woke Noah up to share in the excitement.  I had two children jumping on my bed and I couldn't be happier.  I watched as a cautious Daddy was monitoring every movement she made, still in disbelief they were there.  Ellie's doctor at St. Jude came up with this plan to allow Richard and Ellie to come home for the birth of SG.  Since Ellie had done so well with her first round of meds, they allowed Ellie to make the trip home, but she had to be back by Tuesday to start her next meds.  Richard desperately wished and willed SG to come early so he would have more time with her, we were scheduled to go in Monday morning to have her.  She did not make the early arrival he had hoped for, but we got to spend a weekend of the four of us. 

 Making muffins for Daddy

 A little sports action!

Sunday morning arrived and I had never been more excited to take my family to church.  I let them both pick out their clothes for church...not caring what it was, but they looked beautiful all the same!

 

I couldn't help but smile all through out church.  Ellie fell asleep in my lap, she had been pretty worn out all weekend...a lot more activity around here!  I held her tight, no matter how uncomfortable I was, I wasn't letting go.  It's amazing how two weeks away from your child can feel like a lifetime.  I tried not to concentrate on the fact that they'd soon be gone again, I tried VERY hard to stay in today.  After church we came home, packed the last of our bags and headed into town to my parents house, they live much closer to the hospital then we do and its so much easier to leave from there.  Of course in true Baby Girl Blaine fashion it was snowing Monday morning as we went into the hospital.  Ellie was also born in the snow...but she was born in January...not March! 

We checked into the hospital and got settled in our room...I think we can rate hospital rooms at this point since we've seen enough of them lately...this was definitely a 10!  My mother in law showed up around 7 with the local newspaper in hand...(ok she really had like 6 in her hands).  I had met with a reporter from the local paper the week before, and they had also sent a photographer to our house to take pictures...which surprise Richard and Ellie got to be in.  Well we had no idea it would be on the front page!   That's how we introduced our nurses to "our story"....Hey this is us!  As I anxiously waited to be brought back to the OR, I just couldn't be more thankful for having Richard there beside me, despite all his wise cracks and silly jokes!  I love my sister so much for being willing to fill Richard's shoes (although I don't think she would have had the jokes he did), but there is nothing like having your partner in life there beside you.  When it was finally time to go, I wasn't nervous or scared, again Lord gave me the peace I needed for that moment!  As they were getting everything ready in the OR, "our story" came out again, the anesthesiologist, at one point bent down, kissed my cheek and told me she would pray for us.  *You've heard me say it a million times, but I will never get tired of the lives we touch with our story.  I will never be tired of having people turn to our heavenly father and say a prayer, because of us*  Richard was super excited to be there, but to also get to watch the whole thing...like a kid in a candy store!  I heard Sarah-Grace's beautiful cry right away.  This sweet girl who God surprised us with, who had to live "inutero" through a week long stay at UVA, who is being born into this loving family with a crazy situation going on...is finally here.  She was 8'2 and 20in long and a head full of brown hair!

She was immediately ready to eat...although she did wait patiently for Mommy.

You never know how much this moment will mean until you are faced with the idea of not having this moment.  It may have been a short visit, but he was here, he got to hold her, kiss her, change her diapers.  He got to be there when all his children met for the first time.  Most importantly I got to have him there, my supporter in everything I do, was right there beside me.  I am truly blessed.

 

The kids showed up soon after she was born.

 

Just like when Ellie was born, everything just felt right.  This is how our family is supposed to be.  In 24 hours we would be split again, but for this moment, in today, we were the Blaine's, family of 5.

My girl's....this is a hard one because I don't know when they will get to see each other again, and by the time they do, so many things will have changed.  I am beyond grateful for the iPads so that they can see each other every day, they can be there as much as possible for the firsts and all the other moments in between. 

 

4:30 am rolled around Tuesday morning, and my Dad, Ellie and my sister showed up to pick up Richard and drop my sister off.  Ellie came in, smile on, Hi Mommy, we going on a plane!  While its not easy to say goodbye to them, I again was covered with a peace from above.  I knew this little fighter was off to conquer some more meds, surprise some more doctors and wrap some more people around her princess fingers.  I knew Super Daddy was well prepared and he felt complete getting to see his new baby girl. 

 

They've been gone for a few days now, we are back at home.  Sarah-Grace is amazing.  I always knew God provided but I cannot share enough what he has done with this sweet little baby and what this momma can handle.  She doesn't fuss unless she's hungry or you are changing her clothes.  She sleeps, day and night, I only have to get up twice at night to feed her, nursing her is going great compared to the previous two babies.  I feel like I'm healing well, with my mom here, I don't feel the need to do everything, like cook or laundry (I do do those things on occasion). 

 

I've only gone crazy post prego crazy once, and it all started because the computer wouldn't connect to the internet.  I called Richard to fix it, like he'd be able to do that a million miles away.  He told me just to close it and walk away, of course I argued and he calmly loved me and tried not to argue back with me.  Its hard not to have your fix-it man here, especially when it's probably something dumb that only your husband could fix anyway.  He knew there was more to it then a silly computer issue.  I'd been struggling with staying in today.  Not having Ellie here is hard, yes I now have SG to focus on, but my mind still wanders some days...especially since SG allows for so much down time.  Richard and Ellie had skyped me the night before from the play room at St. Jude's.  They wanted to show me the juke box that Ellie loves to dance to.  They put a song on, "I'll fly away" and started to sing.  Every part of my Mommy skin started to crawl.  How can he let her sing that?  (we sing it in church all the time...but now it has a whole new meaning to me) What if she flies away before we do?  Luckily I stopped my brain right there, or something did...probably the dirty diaper I was attempting to change.  The thoughts of tomorrow and months from tomorrow came flooding into my brain.  All I could do was hang up with them and cry.  I do take comfort in knowing that if something does happen to Ellie, she will be in Jesus' arms.  I know we would see her again one day, but the Mommy in me doesn't want that to happen...I want her here.  I started to wonder if I was naieve because I don't go researching this illness, not that there is all that much info out there on it.  I don't look for things like survival rates, and mortality rates.  I don't ever think past today, I don't imagine my life without her in it.  I don't know the final destination of our journey, but I'm okay with that.  I can't waste this time stressing something that I don't have an answer to, nor do any doctors.  I truly believe it is God who is working though our doctor's to help Ellie.  He has the answers, and I will trust in Him to guide me down the right path.  Sorry if this one is hard to read, as a mom I don't think we ever imagine having to think these thoughts, and I'm sure if you are a mommy reading this you are imagining being us, putting yourself in our shoes.  I tell you, the only way you will ever make it though a journey like this, is Jesus.  No one else will ever be able to give you the answers or the comfort you seek. 

 

"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28

 

 

 

 

Prayer, Praise, and Pink

~Carly and Sarah-Grace

It's 5 o'clock somewhere...

That's what the day felt like when it was time to come back to St. Jude...

 We left Carly and Sarah-Grace around 430am Tuesday morning. We arrived in Memphis shortly after 10am and had a full day ahead of us. We were able to stop by the Target house for about 30 min, enough time to drop our bags, open a little bit of mail, and catch the next shuttle to St. Jude. A fast lunch and then she went through PT, OT, had her port accessed and a check up in the clinic. We picked up our mail, enough to fill a wagon and a backpack and got to head back to our house to unload our mail truck (aka. Target Cart). 

Some FaceTime with mom, we unpacked then repacked while dealing with some confusion with time. I had no idea which phone, computer, or clock had the right time. The clock in the kitchen apartment was an hour behind the clock in the bedroom. The IPad had a different time than the one in the bedroom. For a while I convinced myself I had and hour more than I actually did. I even had to text Carly asking her what time it was in Virginia... We barely caught dinner at 7 before the cafeteria closed and were checked into our inpatient room by 8:15. We were both whooped and asleep in no time.




Wednesday Ellie continued her chemo treatment with Vincristine and Cisplatin, drugs that will continue to stop the tumor cells from dividing/growing. She's also been give Septra to prevent infections and anti-nausea meds as well. Even with a long list of possible side effects Ellie made it through the day flawlessly! Id tell about our doctors visit but apparently they stopped by while Ellie and I were catching our 2 1/2 hours nap, pops! At least we didn't sleep through lunch..






Ellie and Sarah ... unfortunately not Sarah-Grace





This is Ellie ditching me for her best friend in Physical Therapy, Angela. Ellie "see you later daddy"...






Spending some time making and Easter card with some volunteers




Thursday morning Ellies blood and urine were tested and all came back with good results, praise The Lord! Today she received Cyclophosphamide and Mesna. Cyclophosphamide has a higher risk of bladder infection and the Mesna is given to prevent the damage to her bladder and offers some side effects of its own. The Cyclophosphamide only took about an hour in the IV and they gave her a dose of Mesna before and after the cyclophosphamide. She will get five doses total. 

Ellie did get sick today around noon and took a nap shortly afterwards. She hasn't eaten much of anything today (except goldfish), understandably.A group of 5 doctors came by to check-out Ellie. They didn't stay too long because she had just gotten sick before they walked in the door. I'm sure we'll see them before we escape tomorrow.

In the late afternoon her urine output was higher than her fluid input, which I am told is typical for cyclophosphamide. They added an additional IV to make sure she was getting enough fluids. We made it through that and she's back to her normal IV.

Ellie deciding on her own to make a funny face at Dad..

Ellie and Abby... 

We are expecting to be discharged from the hospital tomorrow. Maybe then, we'll actually get to spend some time in our apartment and officially get moved in.


Going forward....

They will continue to monitor her hemoglobin through bloodwork. Hemoglobin is a protein in the red blood cells that carries oxygen through your body. Typical hemoglobin levels are 12. Ellie is currently at 10, but is not a concern until it gets below 7 or 8. If it gets that low she will need a blood transfusion, which is expected to happen at some point.

Her Absolute Neutrophil Count (ANC) are expected to drop within 7-10 days (from yesterday). Once it drops below 500 she is at high risk for infection because she will not be able to fight them off. In order to help her bone-marrow to build up neutrophils she will be getting a daily shot of G-CSF (Filgrastim) for 10-14 days until her counts. I will be giving her these shots most of the time unless we are inpatient. I got my lesson earlier today of how to give the shot but the nurse has to watch me give her an actual shot and approve before we can get out of here. 

From what I understand we can probably also expect to see some hair loss by end of next week as well.

I'll be praying greatly for these things and anticipate the same from those who read. I'm not really sure how to prepare myself to see some of these things come to life, but we expect a couple visitors next week (Aunt Kimmie and MawMaw), I suspect their support will be put to some good use. :-)

Love.Always.

Super Dad & Super Ellie

I Miss you Sarah-Grace and Carly!