The Blaines

The Blaines
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Buggin' For a Cure

Buggin' For a Cure
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Tuesday, July 30, 2013

Home is where...you feel better!


Jesus replied, "Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done. Matthew 21:21

I've struggled over the past week about what to write about...ok so really 3 kids is kicking my butt and I can't muster up the energy or thought process to write! 

After crossing every finger we had while still in Memphis, we packed up our van Thursday, moved out of the apartment at Habitat for Hope headed to St. Jude just knowing they were going to tell us we could go home!  And after waiting for her blood work we quickly learned that we were again trusting in our own plan, and our plan was wrong!  St. Jude wanted us to hang out till Saturday to have her blood work checked again, for fear that she may need some type of blood product by then.  I did my best, "its okay" smile, knowing in my heart that her doctors only make decisions in her best interest.  Having to wait till Saturday meant just hanging around all day Friday, with nothing to do, I mean we could find something, but when your van is stuffed to the breaking point and all your clothes packed up, you don't really feel like doing anything....in fact, Richard couldn't get my pouty pants excited about anything...like dinner.  While mopeing around our temporary housing, my phone rang, it was Ellie's nurse practitioner.  They wanted to see her again tomorrow (Friday) to check some other blood work, and if that was okay we could go home after wards!!  Yeah, I can stop pouting now (not that I did).  We took Ellie out to dinner, which is always fun right after chemo, especially 5 days in a row of chemo.  She wouldn't touch her food, cried if it got near her, and her poor belly had us running to the bathroom every 10 minutes.  As much as you want to do normal things, its so much work!
Friday came, we saw and conquered!  We were given the all clear around 12:45, by this point Ellie was a mess....we had told her we were going home.  I haven't always been sure she understands where home is...but today I realized she knows!  As we ran back to the Grizzly House to pack up again, Ellie cried and cried saying "but I want to go home!".  By 1:30 we were in the van and leaving Memphis, we realized about 30 minutes later we never ate lunch, oh well! 
 
The only excitement on our trip was an almost midnight meeting with the Christiansburg Blaines!
 

Can you tell how loved this little lady is?
 
We finally made it home around 2:30 in the morning! 
I walked through the front door and straight to Noah's room.  I climbed the ladder to wake him up, and as his eyes opened, I heard the sweetest "Mommy!" ever.  He drives me crazy sometimes (ok a lot of times) but I have missed him and his huge heart so much!  We hugged and cried and laughed.  Got jammies on...Noah put his helmet on, took a picture and went to bed.  I attempted to sleep, but my mind was going a million miles an hour.  I was so excited to be home, but all the worries of the next few weeks and months started flooding my brain.  We had brought her home with an ANC of 0.  I don't understand all the ins and outs of these numbers, but I do know that a 0 ANC means her immune system cannot fight any infections.  Her ANC always drops after chemo, and we give her shots to bring it back up, and she's been at 0 before.  But it was an all new anxiety to bring her home and try to keep the germs of the other kids from her.  We stationed hand sanitizer all over our house and prayed that God would keep her safe.
 
I have to say thank you to everyone who held back and did not bombard our house.  I was so anxious about germs and I never had to stress it.  Her first week back wasn't the easiest in the world, but I'm thankful we were here.  She has started her two a week visits to UVA and is making herself at home in the new clinic.  So far she has had one blood transfusion and had to get platelets twice.  She also sat at a 0 ANC for a week.  Her mood was up and down and she continued to have stomach issues, no appetite and for the first time developed some sores in her mouth.  We haven't been able to take her to church yet, which is a day we are anxiously awaiting.  Our church family has been so incredibly supportive of us, and I know how much they just want to see her in person.  I was able to take Noah this past Sunday.  It felt just as good as coming home, I didn't realize how much I missed church until I was there.  By the time we left, my face hurt from smiling so much.
 
I took Ellie back to UVA yesterday, praying that she could at least get off "house arrest", that maybe just maybe her numbers had come up.  Well we are happy to report that not only can she return to the world (with limits of course, I'm still a little nervous), that we don't have to give her shots anymore right now!  Us keeping her infection free for a week when she has no immune system and is in a hospital two days a week is a nothing short of a miracle.  I was told once we came home, she may stay in the hospital the whole time, she may develop a fever.  I did let that information of the world panic me and even let it get me upset...I let that doubt creep in.  But my God came through, like he always does, silly me for doubting and He did exactly what we asked of Him, He kept her infection free.
 
She is in a much better mood, she is laughing, playing and remembering what her old life used to be like. When I saw her crawl in the laundry basket the other day, I was brought to tears...this child used to always be in her laundry basket or her toy box.
 
Life is slowly returning to what it used to be.  She still has the same interests and still loves the same toys.  I guess because her appearance has changed so much, I excepted something else, not sure what...but when I see things like this, I'm encouraged that life can return.




She is still a sandwich fanatic and has now ventured out to spaghetti, fruit cups, fruit snacks, lasagna and pop tarts on occasion.  We still have to battle to get her to try new things...which usually includes screaming, crying, and occasionally a time out, but she's doing it.  We are all doing it and I am beyond grateful.
 
Read this the other morning and I feel like it describes my exact emotions over the past week. 
 
"Bring me all your feelings, even the ones you wish you didn't have.  Fear and anxiety still plague you.  Feelings per se are not sinful, but they can be temptations to sin.  Blazing missiles of fear fly at you day and night; these attacks from the evil one come at you relentlessly.  Use your shield (maybe I should borrow Noah's) of faith to extinguish those flaming arrows. Affirm your trust in me, regardless of how you feel.  If you persist, your feelings will eventually fall in line with your faith.  Do not hide from your fear or pretend it isn't there. Anxiety that you hide in the recesses of your heart will give birth to fear of fear.  Bring your anxieties out into the Light of my Presence, where we can deal with them together.  Concentrate on trusting Me, and your fearfulness will gradually lose its foothold within you." 
 
As happy as I am to be home, as happy as I am with the progress Ellie has made...fear and anxiety still attack me.  I am getting much better of pushing those anxieties aside, but I don't always share them with God when I pray.  I ask him to release those fears, but we don't always talk about them, probably because its too scary and bring out more fears.  I always tell kids at school that feelings are okay, and its okay to feel scared....again not taking my own advice.  I guess the trick is to not let the fear overcome you, where you stop living your everyday life or you stop trusting that God will see your through this journey.  Its a struggle everyday to push those "what ifs" away, to not get scared of what the future holds, to remember what my God has told me, and to not doubt what I am praying for is possible through God.

 
Ellie will return to St. Jude August 12th for her next round of inpatient chemo, Richard is going to go with her, they will be gone for about a week.  She then gets to return home for three weeks, and will have her next MRI September 18th.  I also return to work for the first time since February, on August 12th.  Until that day, I am going to continue to enjoy every moment we have here, delight in all the arguments, crying and chaos that is my house.  I will do my best to not fear what tomorrow holds.  I will continue to ask God to heal Ellie, despite what the world says. 
 
We ask that you pray for all children battling cancer, but we ask you in particular pray for some other Pineoblastoma kids that are having a very rough time right now, some have received some very devastating news.  Please pray that they would feel the Peace that only God can provide.  Pray for healing for those children, and pray for a cure.  It is heartbreaking to see all these beautiful children suffering without a way to make them better. 
 
Our family will be walking in an upcoming walk on September 28th in Charlottesville, VA for CureSearch, which is a national non-profit foundation that accelerates the cure for children's cancer by driving innovation, eliminating research barriers and solving the field's most challenging problems.  If you would like to join us or make a donation to the team, please visit our Princess Strong Team Page.
 
Thank you for your continued prayers and love.  You all motivate us and inspire us daily. We love you!
Prayers, Praise and Pink
~Carly (and the other 4 crazy Blaine's)
 
P.S. it has taken me 3 hours to write this, with kid interruptions....SG wants a bottle and I'm afraid if I don't publish this now, it will get forgotten....so forgive the typos, I'm not re-reading :) 
 
P.P.S. Ellie gets to go to church tomorrow night!!!

Saturday, July 13, 2013

Thank You

I realize that sometimes on mobile versions of the blog, the songs don't always show up.  If you get a chance to listen, please do, they are some of the most meaningful songs to us!  This song has been running through my head for the past few days. 
 
As we headed to the hospital Thursday I knew we should be finding out the results of Ellie's lumbar puncture...finding out if those tumor cells would be gone.  If you remember last time, we were told they were gone...and then the next day told it was read wrong and they were not gone, just a less concentration.  My heart continued to say, they will be gone this time, but my brain kept trying to tell me other things...I did my best to keep those thought out of my head, and thankfully Ellie's OT appointment helped distract me.  Our appointment was almost over and they called Ellie to clinic over the loud speaker...my heart about jumped out of my chest.  They never call us to clinic over the speaker, especially when we haven't even checked in yet.  I joked and said, they can't wait to tell us her fluid is clear!  As our favorite nurse practitioner walked in (maybe we should have another child so we can name that one after her...you have to read way back if you don't get this joke, we named SG after the last nurse practitioner), we heard the words "her CSF is negative".  While I could believe it, I couldn't believe it  The tumor cells in her CSF (spinal fluid) is what put her in the high risk category when this all began and made this a much harder cancer to treat, and now they are gone.  At that moment in time, there was no cancer in my child's body for the first time in 6 months.  I desperately tried to hang on to that thought...but soon my brain started up...and my body's natural defense mechanism kicked in...trying to protect my heart and be prepared   "will it come back? how do we know if it comes back? this is a tricky cancer...can it really be this easy?"  We sent out the texts and posted it to facebook and everyone around us was beyond ecstatic...and for some reason I wasn't.  Once we got home and Ellie and Richard went to sleep, I sat down and read all the facebook messages and texts.  I saw Ellie's face all over facebook with people shouting His praises.  It reminded me of a car accident we were in one Christmas day B.C. (before children).  It happened so fast and it was so scary and so many people swooped in to help, that I didn't really cry about it until much later than afternoon at Richard's mom's house.  He wrapped his arms around me then and held me, and now years later, he still knows how to comfort me.  Hearing that her fluid was clear wasn't scary, but it happened so fast and was then followed by a ton of paperwork to start the next phase of treatment, and then more bloodwork.  Then it hit me...He did it.  He used us to share His power and His ability.  He told me He'd heal her and He did.  I cried and praised.  We had to head back to the hospital that night to start Ellie's next round of chemo.  Richard and I finally had a chance to talk and share and then went our separate ways to our separate couches. 
 
So far Ellie has been through 2 days of this 5 day chemo treatment.  Today was by far the best day she has had inpatient.  She has an appetite despite the chemo, its not an appetite for the room service food, but we'll take it!  The nausea meds are doing great at keeping her eating, and giving her nice long naps!



 
Daddy's with her tonight, while I will enjoy the nice big bed...hope I can sleep without the noise of a hospital :).  We are on the countdown till we get to go home.  Our doctors here are chatting with UVA oncology to warn them...ok prepare them for the princess' arrival.  We don't have a firm "go home" date, but I would suggest not sending anymore mail to us here in TN, since we hope to be gone by the end of the week. 
 
Ellie's treatment plan still stays the same.  We did meet with a radiologist, however at this time, it is not something we will be doing.  As I listened to him tell us all the statistics of the "world" and the lack of statistics about Pineoblastoma, I knew this wasn't for us right now. (ok...while I listened to what I could understand...the rest of it was German to me)  I prayed for God to lead us to the right choices and I believe He did.  Ellie's cancer is responding so well to chemo that we aren't going to mess with a good thing.  Also her age is a big factor.  When we first talked about radiation, I felt sick and scared listening to the side effects that could happen if we started radiation now, but then our little miracle happened!  Thank you all for your prayers.  I truly believe God performed a miracle in her life....He told me he would months ago.  I love that this miracle has brought many people together to rejoice and be amazed at just what God is capable of.  While we still have a long road ahead of us, this is a huge step.  Please continue to pray for Ellie's appetite and good mood, and our travels home...and don't forget to tell Him "Thank You".
 
"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall;  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
 
 
Prayers, Praise and Pink
~Carly


Wednesday, July 10, 2013

Peace

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

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

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

Thank you again for your prayers and encouraging words. 


Our sign we brought to the airport, incase Daddy forgot who we were :)
Yes, she is a princess
Wheelin home
Never imagined this would be our journey...but I've come to call it our beautiful journey.

Prayers, Praise and Pink....and Peace
Carly

Sunday, July 7, 2013

Confessions

He told me he is going to heal her. In a moment a few nights ago while laying in bed and praying with Ellie, He said "I will heal her" I smiled, placed my right hand over my heart and he filled my body with peace.  So why am I not screaming it from the rooftops....why didn't I tell Richard right away...because I'm being a doubter.  I'm worried if I proclaim it and it doesn't happen I'll be wrong, that maybe I didn't really hear it, or maybe I'm crazy...that sounds so dumb.  I've posted before about confessing sins to one another and I have got to let this one go. 
I've had a tough couple of days, spiritually.  I have been reading and praying hard.  And as many great things as I read and am encouraged by...the doubts still creep in.  Not even sure if I can call them doubts...just the thoughts that lead to other thoughts.  The statistics and what other children go through, the fact that there's no real cure for what Ellie has...it just all has been overwhelming.  I guess its hard to look at all the "facts" of this earth and then believe in something I cannot look at, but only hear and feel, and even then no one else can hear or feel what I feel.  My brain still hasn't shut up and with Ellie's emotional roller coaster she's been on this past week, it hasn't been easy.  Thankfully I had the relief of family for a few days. Nothing brings Ellie's spirit up like visitors and plus is was her Uncle Wayne. Ellie loved having friends to love on and play with...not the same old Mommy! 


Our visitors left Saturday and Ellie's meltdowns came back and my crazy brain started up again.  I just felt so confused...why am I still struggling with all these questions and thoughts...I've been praying...what am I doing wrong?  Here's the answer I found, right in my daily devotional I opened that night -
 
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.  If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.  But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.  That person should not expect to receive anything from the Lord.  Such a person is double-minded and unstable in all they do". James 1:2-8
 
Oh hello..."when you ask, you must believe and not doubt"...sound familiar.  I've been praying and asking for help...but where is my loyalty...to God or to the world.  I love the description of a wave...that is exactly how I feel...I get to feeling good, confident in myself and my strength...and then something (the world) drags me back out to sea and my confidence is shaken.  (I also like this description because I am missing the beach something bad this summer!) 
 
So reading that devotional got me all excited that I read the next one too...(I'm so far behind anyway, I could read a weeks worth and still be behind!).  Here's the quote that grabbed me...
 
"Those who abandon ship the first time it enters a storm miss the calm beyond.  And the rougher the storms weathered together, the deeper and stronger real love grows." - Ruth Bell Graham
 
Apparently I have a beach/sea theme going on...but I don't think that's why I loved it.  I loved it because I've always thought this journey we are on is going to bring Richard and I closer, our families closer, others closer to God, but I never thought about my own relationship with God.  This storm is bringing me closer to Him, I am experiencing real love.  This isn't easy. Those nights I can't sleep trying to plan out the rest of my life, I beg for peace and sometimes it doesn't come...and sometimes it does.  He is making me question myself, He is showing me my weaknesses and showing me exactly how to fix them.  Every time I struggle, he leads me to the answer, its up to me to read it and do it.  He is teaching me things that so many people may never get a chance to experience about His love.  Not that I would wish this illness upon anyone, but the lessons I've learned, I wish I could teach everyone.  I should be beyond grateful that my Lord listens to me cry, hears my prayers and plainly says "I will heal her".  People have told me before, she will be fine, they believe she will be healed, I thank them, but in the back of my head there's this voice that says "you don't the statistics".  But this life isn't about statistics, its about living by faith, not by sight, or statistics. 
 
So as I stood in the shower this morning and those silly thoughts tried to creep back in, I put that right hand back on my heart ("So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10) and that beautiful heart warming peace surrounded me.  I continually repeated "trust in the Lord with all your heart" and I made it through that moment.  My wonderful husband (who I will see Tuesday!!) called just at the right time, and I finally shared with him what the Lord told me.  It was hard to explain it in words on the phone, but I did it and now I'm excited to share it with you all.  I'm smiling because He has told me His plan, He will heal her.  He has given me the tools I need when doubt starts to creep in.  He loves me.
 
And He loves this little princess too!
 
So now you know my confession.  Since I have shared it with you, I hope that you will pray for my doubts to stay away.  That I will remember in those rough spots to place my right hand on my heart, and not try to "reason" things out with the facts of this world.
 
Prayers, lot of Praise, and Pink
~Carly

Tuesday, July 2, 2013

Shut up!

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

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


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

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

If I just listen well enough and open my eyes, He is preparing us to go home.  When Ellie first got to St. Jude she had PT twice a week.  About a month ago she was dropped down to once a week.  Today, she was dismissed from PT, she has exceeded every goal they set for her.  Part of me was sad...but once I look back to where she's come from...
...I couldn't be more proud of her and all she's done!  God is letting me know she's ready.
 
 She is doing great.  Her ANC has been at 0 for longer than before, which makes life a little tricky with a two year old.  She's so good about her mask, but we can't really go anywhere or do anything.  She has become so good at getting her shots, barely a whimper anymore, even helps get everything ready.  Due to her low ANC she hasn't been in the best mood ever.  When she's rested and happy, its all good, as she gets tired or is made to eat....watch out!  Eating is hit or miss...as she is currently telling me she can't eat because "her wings are wet"...(this tinkerbell thing has gotten a little out of control).  She is starting to talk to people again, which warms my heart.  I have even heard her tell people her name...which I then have to translate because most people don't understand "e-ye bane". 
 
Ok so maybe we are more ready than I thought...thank goodness for this blog and all of you who read and pray...I do my best thinking and reflecting while typing.  Richard is flying back in next Tuesday for Ellie's MRI and lumbar puncture.  I cannot wait to see him and I know he cannot wait to get his hands on Ellie!  Ellie will start her new chemo meds next Thursday or Friday and then after 5 days we are home free...well for 3 weeks at least until she has to come back for her next round.
 
Its just another chapter in this journey.  God has always been right beside us, every time I feel down, he gives me peace.  Even when I find myself yelling "shut up" at me...I feel him calm me down.  I have no doubt he will guide us through this next stage.  My anxiety doesn't show my trust in Him....time to let it go!
 
 
Prayers, Praise and Pink (and a little Pixie Dust)
~Carly