I've got to type this before I explode or lay in bed any longer, planning this blog out in my head. Ellie's progression went quick, and with each day she lost more and more energy, spunk, appetite and consciousness.  In an attempt to get Christmas in while she was still happy, we tried to do Christmas on Friday.  All I wanted was for Ellie to have a Christmas morning, opening gifts like kids do, I just wanted to see her smile at one gift. I thought for sure God would give me just 5 minutes of that, however as our Christmas morning came, Ellie was more "out of it" then she had been.  We had a hard time getting her to respond to us and ended up having to call upon a nurse.  Noah of course was still beyond excited for his Christmas morning, and had a blast opening up all his amazing presents...Santa was very good to that little boy! 

I was upset, this wasn't the Christmas morning I had envisioned, even if it was a few days early. I just didn't understand, why.  She slept the most of the day, got some new pain meds and seemed to be able to rest better, after she ate some ice cream!  Richard and I talked with Noah, because we knew it would be soon that Ellie would be leaving us.  With true heart ache he cried, which hurt so bad. He didn't want her to leave.  This was a time where I know only the Lord could have provided us the words we needed to explain all of this to him.  His questions that followed were truly that of a 5 year old, and I loved them.

Saturday Ellie found herself a little chattier.  From her couch she would call for us if we walked away from her.  She was hard to understand at times, but we loved every mumbled word that came from her mouth.  As family arrived, if she was conscious, she would try to chat with them.  She informed us if her feet (excuse me, her socks, because in her eyes you can't call them feet if she has socks on) had come out of her blanket.  She made us giggle many times, and just blessed us with her love. She even kissed her daddy, and put her arms out for me to hug her.  She drifted in and out and I found myself holding my breath, waiting for her next one. You don't realize you are doing it, until your chest starts burning. After everyone had left she started to seem uncomfortable so I sat and held her. She started to seem to have trouble breathing, we sent Noah to bed and sat with her. Her breathing got worse, she just couldn't get the junk out of her lungs, which I later learned the official term is the "secretions". We started giving her meds to try to calm her down and manage any pain she may be in. As we waited for the nurse her breathing got worse and her chest rattled. We both thought this was it, as her struggled continued, I prayed for him to take her, to keep this pain away, I told her to go....seeing your child struggle is beyond words.  As I was praying, her breathing stopped for a minute, as I held my breath, I felt her spirit leave and I thought for sure we were done, but then her labored breaths returned, and I just couldn't understand. Why was she having to endure this too? Hasn't she been through enough? I wasn't mad, just so hurt. Every squeak her chest made, my heart broke. Her nurse arrived, and her breathing seemed to calm down.  Throughout the night it got worse, then a little bit better. Sunday morning as she laid on Richard, she didn't seem to be trying as hard to breathe, but her chest was still rattling. We took turns holding her, while getting Noah ready for church. Our plan had been to give him a "normal" day with his friends. As Richard was helping Noah get dressed, I felt her breathing calm down and quiet, within moments, she stopped breathing, with Richards and I's arms wrapped around her. I felt the most amazing peace in that moment. I understood it all at that moment. Ellie's spirit left the night before, when I felt her go. The nurse kept telling me she wasn't in pain, now I believe her, Ellie wasn't in that body we held all night, God was merciful and took her without pain. Her earthly body just wasn't ready till this morning. She left us with the most peaceful smile on her face. I praise God for taking my girl, for healing her and for loving her and us.
Once Noah returned from church, we shared with him what happened, he looked at his sister, and said "I thought you were going to say that" he got sad, hugged Richard and I tight, kissed her, then went to play.  He later returned with a princess strong shirt on, which he put on all by himself. I love him.
Death used to be a scary thing to me, it's not so anymore. As her fingers clung to mine, I knew Jesus had her, and one day I would see her again, in her new cancer free body, hopefully with ponytails, because she loved them.

The days that followed we not easy by any means, but we were surrounded by amazing people that made every step of this journey a little bit easier. I'm not sure I could possibly name everyone, but know how supported and loved we felt by our family, friends, and strangers.  Things like picking flowers felt silly, yet important.  Picking Ellie's clothes was extremely easy, she had her favorites, picking my clothes, a whole other story.  Again I battled with important, yet insignificant, they were just clothes, but I wanted to represent my girl.  Several times in the middle of the store I lost it, but the Lord has blessed me with a wonderful husband who reminds me I don't need to worry about the people around me.  I didn't want it over done, I didn't want anyone to lose sight of what was truly important here.  Yes, we lost Ellie here on earth, but the Lord did amazing things through her and us.  He didn't let her suffer long and then took her to be with him, giving her, her own personal angel escort home.

We spent a lot of time talking with Noah about what would be happening on the days ahead, explaining funerals, family nights, caskets, cemeteries, but most importantly heaven.  He loves to read about heaven. He has such an amazing understanding, that Ellie has been in heaven since Sunday, she is no longer sick, she doesn't have cancer anymore and she is happy.  What we can see is the body that was sick and she doesn't need anymore, because God will give her a new one.

 

Ellie's reach continued all over facebook as loads of pictures rolled in from all over the world of lights being lit for Ellie, and honestly I haven't looked at most of them until today, and I'm amazed.  As we approached our church Thursday night for family night, I felt like I couldn't breathe, I knew it wasn't going to be easy, I had no idea who would be there, but as we turned the corner, I saw this...

This was an amazing labor of love. I know it wasn't warm outside, but these wonderful Elves were there making sure those lights stayed lit.  I know one little girl who loved Christmas lights, would have adored these.  As I prepared myself to bring Noah in to see Ellie, I asked God to just give us strength and peace, and I was comforted. Noah was okay, but sad, and then quickly went off to his iPad and headphones (I know what this little boys purpose is in life, to give his parents visible strength). I looked in amazement at the line of people there to love us.  Faces we hadn't seen for years, traveled to good old Orange County to be there for us.  Thank you.  I know there were a lot of tears, and I was grateful for the peace that God gave me, and I hoped that with each hug I gave, I was passing that peace on to others who were struggling.  After Noah had written on everyone with invisible ink and SG had been held by pretty much everyone, we went home to pig out and sleep.  I can't say I slept that much, it was like the night before Christmas, which I'm sure is an odd way to describe it. I was excited for the day to celebrate my girl. 

Richard and I went over the church early, just to see her face one more time, she still looked beautiful. We kissed her, prayed over her, and thanked the Lord for her.  It was a precious, quiet moment.  There was music playing, and the song that came on, I didn't know, but it talked about God have your entire life planned before he even formed you, it made me smile. She was chosen, it was planned, she fulfilled her purpose.

We went home to prepare the troops...boy is it hard work trying to get dressed in black clothes, when you have a white dog who sheds :).  Once Noah was dressed we handed him is iPad and said "don't move!"  While I got ready I remembered my sweet girl who would come in my bathroom and watch me put make up on or do my hair.  I would always joke with her about if she needed me to curl her hair, to which she would laugh "I don't have hair Mommy!".  She would come look in my mirror to see herself and ask "do I look pretty?" or tell me she looked beautiful!  I felt like I was putting my super hero cape on as I put my sweater on.  I felt God pumping me with strength.  Sparkly headband and pink scarf on and we headed out.  I adored the pink I saw on scarves, headbands, belts, mens shirts and ties.  Beautiful flowers surrounded her, and I was glad Richard made me take the time to go pick out flowers.  As the church got packed and Noah got antsy and of course SG woke up, service began with prayer.  I could hear her "shhh Mr. Preacher is praying".  We had picked out her favorite songs from church and everyone sang, I loved it!  Sweet Noah would crawl in my lap and hug me when he felt sad, and then whisper something about Ellie that makes him laugh, which in turn made me laugh. 

 

My most proud moment was watching my husband so bravely get up and speak.  If you know my husband, you know this is not typically his thing, but he felt strongly about doing this.  The words I heard come from his mouth were beautiful, if you were there, I know you were just as moved.  He spoke of our purpose here.  That God has started something in all of our lives, and he will carry it out unto completion.  Philippians 1:6 "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."  God started something in Ellie and completed it, and it only took her 2 years to do so. "Don't let God's work stop here. Don't let the light that shined through Ellie grow dim. If Ellie's work has touched you as you say it has, then pick up your cross and let the light keep shining." I can't say the rest of what he said as well as he did, but I just kept thinking how proud of him I am. He spoke of his cousin's funeral several years ago, and its funny because I had been thinking about the same thing, but we never talked about it, he hadn't shared any of what he wanted to say with me, until that moment.  He/we were much different then.  Richard had such a difficult time with her death, while completely different circumstances, he never saw the hope in it.  I believe the man he is today, is a true testimony to just what God can do when you give your life to Him.  As Ellie's pink flower wearing pallbearers escorted her out, I saw the faces of so many.  People we didn't realize where there, that had traveled many miles, walked by our car.  So many friends I wanted to squeeze so tight, but blowing kisses had to do for now.  Thank you all for being there. 

I will never again complain about being stopped for a funeral procession.  I felt honored that all that traffic (okay so its orange county, there's not a ton of traffic) stopped for us.  I looked back at the line of cars and felt so encouraged, sharing Ellie with so many was worth it all.  All these people had been touched by her sweet smile, her dimple, and our love of Jesus.  Once at the cemetery, with my Daddy by my side, he approved of her resting spot we had chosen.  That meant a lot to me, as we looked out at the mountains, it was beautiful.  I didn't cry until we sang "Victory in Jesus".  The sweetness of those voices, without any music accompanying them, in the brisk wind, is probably a sound I will never forget.  I think I squeezed Noah and my Mom's hands till they turned blue, but they were my strength in that moment.  I fully expected Noah to yell I was hurting him, but he never did (thank goodness). 

 

We returned to church and were treated to an amazing meal...more thanks goes out to our wonderful church family.  There is just so much thanks to give.  Everywhere we turn, someone is helping us, from the funeral home men, who were so sweet and I know took care of my girl as if she was there own, to friends who provided the programs for Ellie's service. Thanks to those who sent flowers or hung a wreath on my driveway. Thanks to those who cooked.  Thanks to those who helped serve food or get someone a drink. Thanks to those who hugged and kissed me. Thanks to those who played with Noah or held SG.  Thanks to those who gave little presents to make Noah smile, or gave him a small wave.  While his shyness prevented him from going to say hi, rest assured, he saw you and pointed you out to me. Thanks to those who hung out at our house for hours just keeping us occupied.  Thanks to those who have been on this same path before me and shared your heart and knowledge with me.

 

Our house is quiet now, sometimes too quiet.  It feels less stressful and less anxious.  It also feels like something is missing.  I catch myself, counting children, or thinking we've forgotten something or someone.  I'm sure that feeling will pass with time.  I know I'm so grateful for Noah and SG, they keep us laughing and smiling.  I'm sure Ellie's passing has caused lots of families to have conversations with their children, they probably didn't expect to have early on.  I pray that when you do share with your children, you share just how much God loves us, that he has prepared for us a place.  Explain to them the joy in there's no more illness, no more sadness, no more medicines (Richard and I celebrated as we poured all Ellie's meds down the drain!) no more hurting. 

 

"Before I formed you in the womb, I knew you, before you were born I set you apart for a special work" Jer 1:5 

 

In Ellie's 1061 days on earth, He started a work in her and completed it.  We as a family were chosen to care for her in those 1061 days, we were set apart for a special job.  As Richard said, God is not done with us yet, so we must stay, but we also must continue to share the wonderful things the Lord did through Ellie!

Prayers, Praise and Pink

~Carly

Please say a prayer for some other Pineoblastoma families who lost their children as well, I'm pretty sure Ellie was one of 3 children all with the same disease who went home to Jesus just this week.

Breathe, Bible, then Blog

I've started this a few times, and nothing seems to come out right.  The past few days have been hard.  Ellie's disease progression is very obvious and is so hard to watch.  Her walking is very uneasy and she would prefer to hold your hand.  She really doesn't go beyond the couch.  She does go to the table for crafts and food, but we usually have to convince her.  She will gladly pick up the paint brush to paint with Mrs. Kelly, but I usually end up having to feed her because she won't pick up the fork, and frankly its just not a battle I feel is worth is.  She continues to say nothing hurts and never complains about anything.  As Ellie has started to look more and more uncomfortable in her own skin, we have started to give her pain meds, assuming that something is hurting her.  They seem to help her relax a little and be a little more happy.  She takes long naps, which I'm pretty sure she is not actually sleeping the whole time, she just won't get back up on her own.  There are moments in the day where I want nothing more than to make her happy and nothing I do works.  Things she would normally enjoy, aren't any fun to her...those are the most heartbreaking moments for me.  Those times where I cannot see my goofy, happy girl come more often these days and cause a lot of pain in my heart.  Although it does make me appreciate those times where she does shine through, I see a glimpse of my girl and my heart feels healed again.

Lately I find myself having moments where I'm angry, I know anger is a "normal reaction", but it can't stay long...and really what am I angry at?  Angry at people with healthy kids, that's silly.  Angry at doctors, no they do so much to try to help us.  Angry at God...no, He's given me so much and I know has a plan for me, that I cannot be angry at Him. Once I start to think like that, I calm down. 

Today I think I hit my breaking point...or now that I think about it, I'm pretty sure the Lord brought me to this point today because I haven't been turning to him like I should. Ellie had a decent night last night, Noah had a friend over and I think having him over sparked Ellie's interest.  She giggled a little more, talked some and even wanted to go see what the boys were playing in the bedroom.  She actually went with me to go see (but only if we brought her blanket with her).  This morning she ate cheerios happily (that's our new go to), ate some eggs, decorated her gingerbread house and then she was done.  I'm guessing she was tired or the pain meds were wearing off. For me its so hard to see her like this and because she doesn't vocalize how she is feeling, we can only guess.  So those feelings, topped with the emotions of other children loosing the same battle as Ellie, I fell apart.  The grief of loosing a child is attacking me before she's actually gone.  As it becomes more and more obvious that we will not be keeping her, my heart hurts more and more.  I had no where else to turn tonight besides the Lord. I needed to find some peace tonight, it had been missing for a few weeks, most likely because the stubborn lady I am, hasn't had my nose in scripture like it should be.  He really put heaven on my heart and here's what he gave me...

1 Thessalonians 4:13-17

But we do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope. For since we believe that Jesus died and rose again, even so, through Jesus, God will bring with him those who have fallen asleep. For this we declare to you by a word from the Lord, that we who are alive, who are left until the coming of the Lord, will not precede those who have fallen asleep. For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord.

2 Corinthians 4:16-18

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Revelation 21:1-27

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”

 Matthew 18:10

“Take heed that you do not despise one of these little ones, for I say to you that in heaven their angels always see the face of My Father who is in heaven.”

2 Samuel 12:19-23
David noticed that his attendants were whispering among themselves, and he realized the child was dead. “Is the child dead?” he asked. “Yes,” they replied, “he is dead.” Then David got up from the ground. After he had washed, put on lotions and changed his clothes, he went into the house of the Lord and worshiped. Then he went to his own house, and at his request they served him food, and he ate. His attendants asked him, “Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat!” He answered, “While the child was still alive, I fasted and wept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me.” 

This last one stuck with me the most. I want to be like David, I will not stop praying for that miracle, because I knew He is able.  However when and if He takes her, I will praise Him.  I know I will be sad and I know it will hurt, but knowing she is being well taken care of by someone who loves her more than Mommy and Daddy, eases that pain a tad.  Knowing she is with someone who sent their own son so that we may have eternal life...wow.  I don't always think like that in the heat of the moment, when the pain and tears overwhelm me, but once I slow down, take a breath, read my bible, and write a little blog, I start to see things in a new light. 

We don't know how much longer we have.  Ellie has blown past the doctor's best guess.  She will have her blood work done again next week to see if she can start the next round of chemo.  The chemo she is on is just palliative and will not cure anything, however so far it is helping us gain time with our girl.  And happy nights, like tonight has turned out to be, I am so thankful for that time and thankful to God for once again knowing exactly what I needed tonight to pick up my spirit and help me get my peace back.

I have to share!  We took the kids to visit Santa, my Aunt, who has taken everyone of my kids pictures took these for us, she tried so hard to get Ellie to crack a grin, but the beautifully stubborn girl she is, wouldn't budge.  This was hard for me at first, kids are supposed to love Santa or at least cry...but not my girl.  In fact the next day she told Mrs. Kelly "I didn't smile for Santa,  I went like this (insert pouty face) and it was funny".  I told her she was a turkey, to which she replied "no I'm not, I'm Ellie Marie Blaine, because I'm a princess!"  She couldn't have been more right, that's been my Ellie since the day she was born, stubborn, funny and a princess!

 

We pray you have a wonderful Christmas celebrating the birth of Jesus! 

Prayers, Praise and Pink

~Carly

Potatoes

I love mashed potatoes!  One reason I love Thanksgiving!  Ellie loves mashed potatoes too!  I think baked potatoes are pretty yummy too....especially piled with lots of stuff on top! And I love some chic fila waffle fries with sauce! Some days I love being a couch potato!  I don't love when my daughter wants to be one.  That's what Ellie was yesterday, if we had left her alone, she probably would have sat there all day, unless she had to pee.  There is a happy ending to yesterday's couch potato extravaganza, but let me back up a few days for you. 

The day before Thanksgiving, Ellie said the room was "spinny". She got upset and clung to me, hiding her head in my shoulder.  It happened again Thanksgiving morning.  I kept asking if anything hurt, I just don't want to see her in pain.  When Ellie first got sick, she never told us anything hurt, besides her belly.  By the time she was admitted, there was so much swelling in her brain, we know she was hurting, but had never told us. Since Thanksgiving there has been  no more spinning (but some yummy leftover mashed potatoes!)

There was no black Friday shopping here...in fact this is the first black Friday in 13 years that Richard didn't have to work.  I think he may have had crazy crowd withdrawals! We did have a white Friday though because we got to see SNOW!  Some friends, along with a ski resort, opened up an area for the kids to sled and play.  Noah loved it...he had his good friend and a sled, he couldn't have been happier! Within a few runs in his sled, he had perfected his steering and stopping (by running into a snow bank).  Ellie was not as thrilled.  New things that she is not confident in are hard for her. Snow is also like sand, very unsteady. So not being on flat ground was hard for her. We got her in a sled and for a few moments she giggled, I think we even got a "weeeeeeeeeeeee" and a "wooo hooo" out of her!  Then in true Ellie fashion, she wanted to be held. She got a ride on a snow mobile with Daddy and the ski patrol and then found her happy spot with my friend to watch the zip liners come screaming down the line.

 

I loved my day with my friends. While I was sad that Ellie didn't enjoy the day as much as "I" would have like her too, I was so grateful for friends who heard her crying, but made no big deal over it.  No one fawned over her or doted on her.  She was just like a normal 2 year old having a meltdown...and it sounds odd to say, I liked that.  I love my friends, I love that we can pick up right where we left off, even though I haven't seen them in weeks!

 

So that brings us to Saturday, aka potato day.  We always watch cartoons on the couch...that's a given.  And Ellie always has to have blanket to cover her socks, but yesterday the couch fascination just didn't seem to end.  She didn't really care what she was stuck watching on TV, she just didn't want to stray far.  Even for meals.  She was cranky and grumpy and anything we suggested just resulted in tears. As a parent, that moment you can't make your child smile or happy is heartbreaking, especially in our circumstance.  We finally got a few giggles from her, once she got over me laying on her!

 

 

Taking pictures of herself...finally smiling!

 

And of Daddy and SG...and Stitch

 

As the night progressed and the grumpiness carried on...in tears I looked at Richard and said "I really don't like seeing her like this"  Its just so hard on your heart to watch her not enjoying anything except the ipad, tv, and couch. Within the hour we had coaxed her down on the floor to play with us.  While many times she begged for the couch back, we got some decent play time in.  She then proclaimed she was tired and we got her ready for bed...but then from out of no where this energy came.  She was  giggling, laughing, and even doing a little "crazy dance".  At one point I think I saw her run!  While she was saving me from Daddy, we climbed up in the love seat and snuggled...real snuggles, in fact she told me she couldn't got to bed yet because she needed to snuggle with me, this never happens, Daddy maybe, but me, not usually! She chatted on for probably the next 30 mins while I drifted off to sleep, and then she'd wake me back up to tell me something else. I completely give this one up to the Lord.  He knew my heart was aching and he provided for that moment. 

 

At 10 I finally called it quits and she headed to bed.  This morning she woke up full of hugs and energy.  While she still headed for "her spot" on the couch, she gladly hopped down when it was time to get ready for church!  She has even found a place in her heart for Oh Ah Ah the monkey again!  He was temporarily replaced by Stitch for a few weeks, but he's back!  Oh and we learned that monkey is a girl...as I said "he" about monkey, she quickly corrected me "he is a gurrll, Mommy"

 

 

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 2 Cor 12:9

 

 

I kept hearing this song on the windows commercial, and we had the TV on the same channel all day yesterday, and this song kept playing over and over.  I finally googled what the song was because I kept thinking it was saying "be brave".  Once I figured out the song, I found this video to go with it.  For obvious reasons this song touched my heart, but I think it's the perfect example of bravery. These children are beyond brave.  If you ever go to an oncology floor (not that I would wish it upon you) you will see a lot of brave little heros.  Sure there may be one or two kids crying (and you should never fault them for it) but generally you will see happy, smiling faces.  You will see nurses with brave smiles on their faces and sometimes even a super hero shirt to make their little patients smile.  You will see parents, smiling at the littlest things and keeping a stiff upper lip, because all you can do is be strong and be brave.  I have never considered myself a brave person, heck I won't even call and order the Chinese food over the phone.  I am the definition of a chicken.  As I watched this, I thought about my growth over this past year.  Of the strength and bravery myself and my family have gained.  Our battle with cancer causes you to be brave, but I'm also proud of the faith we have bravely and boldly displayed.  We don't shy away from the fact that we truly believe God has the power to heal her, its whether or not that is His will.  We know that without our faith, this journey would have been a whole lot more difficult, and we praise God daily for the strength he gives us!  So I'm going to pat my family of the back for being brave...I'm proud of us :)

 

I hope that you all had a wonderful thanksgiving, I know we did!

 

 

Forgot to share about the walk....so here's a recap, real quick!  We had over 170 team members, I'm not sure how many were actually there, way too many to count!  We raised over $25,000!  And flooded that park with pink  Thank you to all who donated and walked and supported!  I couldn't have been more proud or honored!

 

 

I ask for continued prayers for our family.  While we are all spending lots of quality time together, its hard at times.  Please pray for continued strength for each day.

 

Prayers, Praise and Pink

~Carly

Remembered

Wrote this one a few days ago...but it never got typed up...you know how busy we are, doing nothing and loving it :)


Yesterday a reporter asked me how I wanted people to remember Ellie.  I immediately responded with something about her smile and her love of life and not caring what others thought.  I couldn't find the exact perfect words, but I tried.

Today, as I thought back, I wished no one had to remember her...I wished we had never had a reason to be on TV or the newspaper. I wished I still didn't have a clue where St. Jude was and that I had no idea just how many different types of brain tumors there are in this world.  I wished I never had to describe my daughter. If Ellie never got cancer, I'd never be describing how to remember her.

But that is all pretty silly thinking and it stopped very quickly...I can't go back, wishing (even on the evening star Princess Tiana) isn't going to change our situation.  Recently Preacher talked about being in God's will - that you don't necessarily need to pray to find His will - if you are following His commands and doing what you are supposed to do, you are already in His will and He will make known His paths to you.

"Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God - this is your spiritual act of worship. Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is -  his good, pleasing and perfect will." Romans 12:1-2

So even talking about how I wished things were different, just seems wrong.  Its hard to wish something didn't happen when you know its already been planned for you this way.  You know there is a reason for this plan, and He has always walked with us, held us tight and gave us peace, I can't wish away what he has planned.  This was God's intention for our lives, so I'm going to live it, even when it hurts.

The reporter's question made me think about myself as well, how do I want to be remembered?  I know now many people know me as Ellie's Mom. They know I love the Lord and that our faith will not be shaken.  You know this now, but would you have known that a year ago...probably not...I'm not sure I knew that about myself then.  A friend messaged me and encouraged me to go back and read a post from a few years ago that I had written right after Ellie was born.  Here it is..

Could you practice what you preach?

A friend shared a link to a blog yesterday that I cannot get out of my head.http://kandjstaats.blogspot.com/
This sweet young family lost their 4 month old baby girl last week, and as I sit here holding my 4 week old blessing, I can't even imagine the pain they are going through. I spend my days complaining about sore boobs, and laundry and this mother has had to pick out her daughter's casket. I've thought and thought about them, and one thing keeps jumping into my mind, what would I do? So many times when friends are going through hard times, I try to remind them that God has a plan for them and He won't give them anything He won't help them through. Then I think back to this mom, could I truly believe that in her situation. Could I still continue to praise him during the loss of someone so close to me or would I curse him? Would I continue to go to church with a smile on my face or would I shut myself away? Would I thank him for the time I had or would I hate him for the time he took away from me? Could I continue to seek him, live in his will and ask him for guidance or let myself start to run my life? Oh how I pray that if I was ever put in a situation like this family, I could continue to love my God and I would count on his grace to carry me through. I pray this family is surrounded by His love and they know He is in control. Take a minute to say a prayer for this family and then praise God for yours!

I am now finding myself in a very similar situation to this family I wrote about over 2 years ago. Some of these questions I posed two years ago have been answered, and that makes me smile.  I think what stands out the most to me is that God put this on my heart when Ellie was only 4 weeks old.  This family's situation is what caused me to start praying that prayer, that if I was ever in a situation like this, I would still praise God.  It gives me comfort to know that He has been preparing me for this, He has this planned.  I am grateful for a friend who pointed this out to me...reminding me, that prayer I prayed, has been answered.

While Richard and I still struggle with staying in today vs. planning for tomorrow, we are enjoying each day.  We were blessed with a Saturday of just the 5 of us, and it was a fantastic day.  We stayed in our pj's all day, watched a lot of movies and tv and put up the Christmas tree.  There where no distractions, no visitors and I don't even think there was a phone call (which never happens around here!)  Its nice how the Lord intervened because He knew we needed a day together. 

Ellie has started another "round" of chemo.  Her numbers are good, her appetite is fantastic (as you can see in her chubby cheeks). 

 We are gearing up for our Give Thanks walk this Saturday for St. Jude.  We have been amazed at the support team Princess Strong has gotten.  As of tonight, our team has raised over $16,000.  I never imagined it would get this big, but I'm excited and proud and grateful. 

Wanted to share from my daily devotional...I read this page every day, because it just speaks to my heart and encourages me

"Trust me here and now.  You are in rigorous training - on an adventurous trail designed for you alone.  This path is not of your choosing, but it is my way for you.  I am doing things you can't understand.  That is why I say 'Trust Me'" - Jesus Today by Sarah Young
 

 

“Come, let us return to the Lord.
He has torn us to pieces
    but he will heal us;
he has injured us
    but he will bind up our wounds.
After two days he will revive us;
    on the third day he will restore us,
    that we may live in his presence.
 Let us acknowledge the Lord;
    let us press on to acknowledge him.
As surely as the sun rises,
    he will appear;
he will come to us like the winter rains,
    like the spring rains that water the earth.”

Hosea 6 :1-3

Prayers, Praise and Pink
~Carly

That would make me happy

One of Ellie's new favorite sentences is "I need something to make me happy!"...the solution is usually food, and once given to her she exclaims "That would make me happy!"  We giggle, because she has become quite the little munchy monster, with her steroids, but that phrase was really put into perspective for me this week.  We just spent a week in Disney World...what could make someone more happy?  Magical characters, exciting shows, not having to stand in those long lines, seeing your children grin from ear to ear. It doesn't get much better. 

 

We got to spend days with our children, focusing on nothing else except fun and happy.  And as much as you want to keep focusing on that fun, you continue to watch ever step, breath, twitch, or bump.  You watch eating habits, sleeping habits, bathroom habits, just hoping that nothing will change.  My biggest fear going into this trip, was what if we can't get there (which we almost didn't, but that had nothing to do with cancer...love you Richard), I was terrified something would happen with Ellie before we got to take off on this trip.  I continued to struggle with trusting that the Lord was going to lead this journey.  I was getting frustrated with many things before we left, and missing our St. Jude family and their care so much...but we made it to Florida and I vowed, the past was in the past! 

 

Our first blessing was being able to stay at the Give Kids the World Village.  Because Ellie's trip was planned so quickly, we originally were not going to be able to stay there, we were going to be staying at a Disney resort property, which was fine with us.  But the GKTW representative at the airport told me we could always ask if there were any last minute cancellations, and sure enough, there was!  So instead of staying in a hotel room for a week, we were given a two bedroom villa to enjoy!  The best part was the community that surrounded that villa.  There's just something about being around other families that have experienced what you are going through, that celebrate the same victories and understand the stresses.  You don't feel like people are staring at you or feeling sorry for you, they just understand you.  Its also really nice when you don't have the only bald kid around! ...side note, Ellie's hair was coming back nicely, but has started to fall out again, not sure if that is a side effect of her whole 3 days of radiation, or from the chemo she is currently on.

 

We stayed up late, ate ice cream for breakfast, had Halloween twice, spoiled a lot, gave in a lot, played life sized candy land, realized Noah loves roller coasters but is scared of sharks behind glass, learned Ellie doesn't enjoy rides very much - but says she does.  We learned our kids always have to pee once we get in a line or in a show.  Found out just how much Noah loves the water and how much Ellie dislikes it (but if she's in her daddy's arms, its fine)  We experienced what wonderful things being a wish child means, and met some pretty awesome characters.  I am almost positive that one Minnie Mouse prayed for us while she squeezed me tight, I felt her prayers through that big plastic head...it was great!  I had to learn once again to not worry about the thoughts of others.  Getting to cut in front of a line of 30 kids and their parents, waiting to see a princess, is enough to make you fear for your life!  But the joy on my childrens' faces easily helped me ignore the other people around us!  I don't like the circumstances of our trip, but I am beyond grateful for the experience, it is one I know we will never forget.

 

In the land of happy (Disney)...I started to think of the things we put value on and as I was wandering aimlessly through a gift shop, I realized nothing I could buy was going to make me happy. I was in this amazing place, but was having trouble finding my happy.  In fact I couldn't even bring myself to buy the shirt, because tears overcame me and I had to walk out.  Richard ended up going back in and buying me a shirt.  I was surprised at how easily and randomly the tears could come...for no real reason.

 

I worry sometimes that our "today" theory is going to hurt us, that we aren't going to be prepared for tomorrow because we continually focus on today.  There is a stack of papers on my desk that we have been told to look through, things to discuss, we haven't. Just hasn't felt right yet.  Are we in denial? I don't think so, we are well aware of what the "expected" outcome of her disease is.  Are we thinking if we just don't think about it, then it won't happen...no, I quit thinking like that a long time ago.  I think the simple answer is, God has given us the ability to focus on just today.  Many people say, "I don't know how you guys do it, we don't, God does!  He provides us with everything we need for this day. I am assured when tomorrow comes, He will be there to provide for that day as well.  Not thinking past today, is trusting God. its believing He has this planned and He will help us with each step, when His time is right.  He so graciously silences my thoughts and keeps me focused on this moment.  This isn't saying we don't fall apart from time to time, because we do.  But its not out of anger, its just emotions that come pouring out.  This is definitely not the easiest thing we've ever done...and the unknown can be very hard sometimes. However we hold tight to one simple thought, best expressed by Noah "God can do what the doctors can't".  We continue to pray daily that if its in His will, He will heal her, and if its not His will, I pray our love and faith will not falter. 

 

It’s not how much we have, but how much we enjoy that makes happiness. -  Unknown

 

As I sit on my couch with two kids snuggled up next to me and the 3rd gabbering away in her crib, I have to stop and enjoy this.  This is what makes me happy, not food (although it can sure make me smile...and Ellie) not possessions, not gifts or fame.  Speaking of gifts, many people have asked to help us with Christmas, and we appreciate all the efforts, there is one registry that was started, and gifts have poured in...there is probably more Christmas in my basement than these kids have ever seen and its only the beginning of November. This brings me back to the thoughts of "what makes us happy".  The presents make the kids happy, and it makes me smile to give them presents.  What would make me smile more is knowing that other families don't have to experience what we are going through.  The only way to make that happen is to donate more to organizations who are working hard researching childhood cancers. You know our attachment to St. Jude, so there is a great place to start with donations, and you know from our story, all they do for families! You can donate to our St. Jude Give Thanks Walk team here. Team Princess Strong is currently #1 for the Fredericksburg Walk!  You also know our love for Habitat for Hope.  Even though hundreds of miles a way, they are still supporting us with their love and prayers.  You can make a donation to Habitat for Hope, in honor of Ellie here. Those donations, would make me happy, happy, happy!

 

Here's some pictures from Disney, to hopefully make you happy!

 

 

 

 

 

 

    

Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. 1 Peter 1:8-9

 

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

 

We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ. 2 Corinthians 10:5

 

Ellie is still doing great.  She continues to enjoy her days with her friends, and arguing with her brother once he gets home from school.  Her appetite is not lacking at all!  She does get cranky, but I attribute that to being 2 and steroids.  Her energy level comes and goes...she can go all out, but also loves to snuggle on the couch.  I know how thankful I am for these days together. I am thankful for her happy spirit, her love of her family, and the love of so many others around us!  Thank you again for your continued prayers for Ellie and our family.  I pray this week, you can step back and see what really makes you happy, and just enjoy it.

 

Prayers, Praise and Pink

~Carly

 

 

 

 

More Prayer, More Praise, and More Pineoblastoma

We talk about staying in today, but it only seems appropriate and necessary to take a look back at when this journey began. The following is our post shortly after we found out Ellie's diagnosis with Pineoblastoma.

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Jeremiah 29:11 "For I know the thoughts that I think toward you, say The Lord, thoughts of peace and not of evil, to give you a future and a hope

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Philippians 4:11 "not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content."

1 Corinthians 10:31 "Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God."

We know that Ellie was chosen by God a long time ago to go through this.

As her parents we were also chosen, we have been given a privilege, and it is a true blessing. We want God to get everything he deserves out of this. While we would certainly love a miracle and for doctors to be baffled by a tumor that just disappeared, but if that's not God's will, if that not what is going to bring Him the most glory, we're o.k. with that. All we can do is focus on today, the blessings we have been given today, the smiles we have today.
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Back to the now...

When Ellie started acting funny last Friday I did start to panic. She had woken up in the middle of the night very shaky and unable to walk on her own.  I hadn't been warned of this side effect so the radiation docs took a look at her Friday. By then she was able to walk on her own again but not with the same confidence.  They weren't sure what was going on and no one seemed to think it was because of her cancer, but they ordered an MRI for Monday anyway. We went ahead with radiation Friday and by that evening her tremors were back. She just wanted to sleep on the couch. She improved over the weekend, I started to gain my confidence back that this was all just some crazy radiation reaction and she'd be okay. She started moving much better, still a little unsure and wobbly, but super happy.

We learned Monday, after her MRI, that in three short weeks Ellie's cancer has taken over her brain. Her spots have grown, her cancer had begun to spread, and new spots were showing...in 3 short weeks. For a minute I wanted to think, what if we had acted sooner...done chemo instead. But the what ifs get lost when you know you have done everything to follow God's path. I don't think we did anything wrong, this is just our journey. We were chosen for this. And I can't really say I don't know why anymore, I know why. God gave us this beautiful child to share his love with the world. He knew her sweet cheeks would draw people in, they would care about her, they would see how her parents love The Lord. They would see the ups and the downs and they would always see God's love.  I know why, but it doesn't make this hurt any less. My head has swirled with what we do now....I don't want to do this, I don't want to make these plans, I don't want to have these talks. I don't want to lose my daughter.  But I guess that part isn't really up to me. I know He's completely capable of healing her, I just don't know that's His will. It all still feels like a dream. She's been in such a good mood, smiling and laughing.

It was decided to discontinue radiation. Radiation causes the brain to swell and Ellie already has swelling and irritation from these new growths. Continuing radiation would cause more harm to her.  Because of how the tumor has spread surgery isn't an option and more high dose chemo involves hospitals, side effects, and in the end the same outlook. I held Ellie as I took all this info in, with Mom behind me. We always knew what the prognosis of this cancer could be, but never went there in our thinking, because it wasn't happening today...but today it's happening and we are now faced with the reality of this cancer.

She is now home on oral chemo and steroids to help with the swelling. We are home with a team that is being organized as we speak to help us. I am home with peace in my heart for today. The choice to go home was by far the easiest one we've made.  She is not mine.  She belongs to someone who loves her more than I do, even though I can't imagine how much that is. Trying to find other ways to heal her at this moment isn't going to happen....he told me "I will heal her" and he's right, only He has the healing power needed for this one. Trying new things and searching out other opinions is only going to take away the short time we have left. Some how I find comfort in knowing that if I won't be taking care of her that Jesus will be...doesn't make it hurt any less, just has a little extra comfort.

We now have to adjust to this new life, and maybe I'm clueless about what we are about to encounter, but it's not happening today. Today my girl is happy to be home...she couldn't wait to get there to see Noah, SG, Daddy...and Miss Kelly ( since Ellie thinks she lives there). She is in a great mood, has a good appetite and a bright smile. Saying goodbye to our friends at St. Jude wasn't easy, they were such a huge part of our lives and I hope to think we left an impact on them. I know we left a lot of glitter on them...Ellie wore her new sparkly jeans :).

 

Many are starting to ask what they can do to help or what we need or what our plans are...we don't know.  This is still all very new to us and we are trying to figure out what this new life looks like.  As many of you know I love a solid plan as much as the next girl, but our life is truly lived in the "now".  Richard and I are on leave from work and we are trying to enjoy the now as much as possible.  Noah knows what he needs to know for the now, and we just ask that if you are close with us that you speak carefully around him.  He's got a big heart, big ears, and a big brain. He can't possibly comprehend all of this is in our near future.

 

 

Prayers, Praise and Pink

Carly and Richard

The girls are back!

 

Ellie, Nana and myself rolled into Memphis Thursday afternoon. We had a very easy, uneventful 13 hour drive! Only two stops...we deserve a big ol pat on the back!  Right before we got to the Grizzly House, my phone rang with a message from Habitat for Hope, they had an apartment for us! I may have squealed really loud, or cried, I'm not sure...let's just say I was really happy! We would now have our own space, away from hospital life, to be as normal as possible, cook our own dinners, snuggle on our own couch, and of course have time out in our own room :)

As we headed into the hospital Friday, Ellie proclaimed "I love St. Jude" I couldn't have said it better myself! As hard as it is to be so far away from Richard, Noah and SG, there is no other place I could imagine going. After getting her blood work done we headed to meet the radiation team. Once again Ellie fell in love with the toys in the play room, and ended up bringing one of the babies into her appointment with her. We finalized our decisions, answered the last of our questions, and headed to E Clinic. In true E Clinic fashion, they called her back and she then disappeared into the doctors and nurses office, and Mom and I were sent to a room to wait on her.  She returned with stickers and Mrs. Andrea...oh it feels good to be back with them to start this new battle.

Friday evening we headed to somewhere I haven't been in years...a high school football game! Two rival high schools had a fundraising competition for Habitat for Hope. We got to go be part of the unveiling to see which school one.  Ellie fell in love with the cheerleaders...shocker! It helped they had pink pom poms.  

The two high schools raised over $10,000 for Habitat for Hope...and when the kids heard how much they had raised they cried...what huge hearts these teenagers had.  I think back to my high school years, and I'm pretty sure I wasn't that passionate about anything. After the presentation we headed out, but not before stopping by the pink fire truck that was there to meet some more Pink Heals members.  Another wonderful group of people The Lord has brought into our lives.

 

This weekend was spent moving into our new apartment, grocery shopping and just enjoying the beautiful weather today...and maybe a little Toys R Us spoiling...that gift card is coming in handy :) For the first time during all of this, Ellie has started to realize this isn't home.  A few times I have said we are going home, and we pull into the apartment, and Ellie lets us know, this isn't home. My heart breaks a little for her.  She has started the power control battle with me, it's almost like she senses that she is about to be in control of nothing that happens to her.  That's a lot for a 2 year old.

 

Tomorrow Ellie will be sedated for a CT scan which will map out her body and be used for positioning every time she goes into radiation. I'm so anxious for all of this to start, I can't help but imagining those little cancer cells in her brain multiplying and growing...I'm sure this isn't the case...but some days my imagination gets the best of me! I do know it's not my imagination that some wonderful people surround us every day.  Our family continues to support us with love and prayers, friends continually send emails and messages just to say they love us and are thinking of us, meals will soon start arriving at the house for Richard and the kids.  Noah's new school has provided nothing but love and support. The only word I can use to describe our family is blessed. 

 

 

If you are interested in Habitat for Hope and the amazing work they do to assist families in their most difficult times, please visit their website http://www.habitatforhope.org/. 

 

But blessed is the man who trusts in the LORD whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

  Jeremiah 17:7-8

Prayers, Praise and Pink

~Carly