The Blaines

The Blaines
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Buggin' For a Cure

Buggin' For a Cure
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Saturday, March 30, 2013

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

Friday, March 29, 2013

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!

Thursday, March 21, 2013

Why Mommy?

Oh my sweet boy....I should really be finishing Sarah-Grace's hat to match Ellie's...but my heart is overwhelmed at the moment.  Before Richard left be bought Noah a "Holding Cross", a beautiful wooden cross.  Richard told Noah that when he missed Daddy and Ellie he could get his cross, hold it tight and say a prayer.  Noah has used it quite a few times.  At first, he would make me come to his room with him to say a prayer (he keeps it under his pillow) and his prayer would be "Dear God please help Ellie feel better".  As the days have passed and he begins to miss them more and more, his need for his cross has grown, he doesn't always ask me to come pray with him and his prayers have grown.  It was a great idea Richard had...he is Super Daddy after all!  
After I got him in bed tonight, he came back out crying...I assumed it was his typical "I'm sweating" routine, which is usually just a ploy to get to stay up 2 more minutes.  As I looked into real tear filled eyes he said "I just miss Ellie and I don't want her to be sick anymore".  He curled up in my lap and I wished and wished I could make this sadness go away, all I could say is I miss them too and I wish she wasn't sick too.  
He then asked questions about us getting sick, and I found myself in another out of body experience  explaining to him that cancer isn't something we can catch.  Which led to him wanting to know how you get it, and all I could come up with is that God chose Ellie to have this illness.  To which he asked "why"?  (be strong Carly...because I'm gonna lose it).  
Why does Ellie have this cancer?  There is no simple answer...well there is but I'm not sure everyone sees it like we do.  Ellie has this cancer because God gave it to her.  As I explained to Noah, God knows how strong Ellie is, he knows she has an amazing big brother who loves her and prayers for her every day, God knows Ellie has strong parents who are going to continually trust in His plan.  God knows that Ellie is surrounded by a strong church family that will support her family.  And He knows what an impact Ellie's story is going to have on her community.  He chose Ellie to show His power and love to all!  Noah seemed okay with that answer and back to bed he went.  Thank you Lord for giving me the words.  

I have never really asked why us, there's just no sense in it.  As I talked to a newspaper writer today I shared with her, we get the privilege of bringing people together for a good cause, people are strengthening their faith because of us...who am I to second guess why us.  It's not easy, and as Sarah-Grace's arrival draws even closer, I realize more and more how hard its going to be.  I can handle the lack of sleep, the diapers, the feedings (if you read far enough back in my blog you'll realize how much I "enjoy" nursing), it's not having my husband here that is the hardest, not having that emotional support that only a husband can give.  He is that amazing husband who would get up with every feeding, change the baby's diaper, turn the heating pad on for me because I had the worst chills with Ellie, sleep on the nursery floor while I nursed, then take the baby back when I was done and lay her back down.  His heart is so big for his children....again, He's Super Daddy!



I don't know if Richard will write tonight....but wanted to let you know that Ellie was released from the hospital this morning.  Richard said one of the doctors even came in early to make sure that Ellie got to go "home" today!
She even got escorted home in style by Preacher before he left today!  I don't have much other of an update...communication hasn't been great today! 

Thank you for all the continued prayers!

Prayers, Praise and Pink
Carly

Wednesday, March 20, 2013

Update


Apologies for the lack of updates...I haven't been feeling great and Richard's been busy....so here's the latest!

From Richard (Monday)

Our first night staying in St. Jude as an inpatient. Let me tell you a little about the room(s). In Ellie's room, which is good sized, has her bed, a recliner (standard hospital kind), an expandable couch, and a couple cabinets to keep her things. Her bathroom, and it is just hers, has its own bathtub and all the other usual stuff. There is a family room that is separate from her room, but is still just for our family. It's small in size, has and expandable couch, a chair, 10" tv (lol), and it's own bathroom for everyone else's use. 

Ellie had a good nights sleep, or I think she did, it's hard to know because I was sleeping. At least I didn't get woken up from 2a to 5a last night. Maybe the no nap thing helped, who knows. We've met a lot of different people this morning (Chaplin, oncologist, nutritionist, attending, residents, new nurse, & people I can't remember).

FaceTime was cooperating this morning so we had a good conversation with Carly and Noah. Carly was able to see some of the doctors come in and check Ellie out and they were more than willing to converse through the video. Carly got a virtual tour of our rooms and we said goodbye.
Ellie started her treatments right on time at 2:00 with the Methotrexate. According to the Oncologist Dr. Mark the Methotrexate is supposed to stop the tumor cells from reproducing. That's what tumor cells like to do, reproduce, and rather fast. This medicine should stop them and may even turn the cells against one another so they start killing each other. She will be on the IV with this medicine for the next 24 hours. Along with killing/stopping the bad cells this medicine will also stop some of the good cells from reproducing as well. To help counteract that they will give her Leucovorin at some point.

They gave her Zofran about 20 mins before the chemo started to help eliminate any nausea. There is also a good chance that she may develop some mouth sores along the way too. I will help to keep an eye on it but for the time being we are to continue to brush 2-3 times a day. There is a chance of low blood counts but it is not expected to happen. She will have some decreased liver function, which is why the had to have her on fluids before the chemo started and will continue to be on heavy fluids throughout. Again, they will be monitoring her with lab work as we progress in treatment. 

We picked up our first package from patient services and Ellie had a great time opening some presents from the Marrazzos.  She got some more coloring books, markers, and a couple movies to watch (woohoo, more Dora!)

On a side note, it's been good to be able to accomplish some things while Ellie takes a nap. Or when a nurse volunteers to hang out with her while I grab some lunch downstairs. By the way, they were supposed to decrease the meal allowance now that she is inpatient, but they forgot! Hehe.. Looks like someone will be getting a few extra snacks or ice cream cones going forward.

If you remember I told you about a that 2 year old boy who has the exact same case of Pineoblastoma as Ellie? He was our neighbor last night and earlier today. I was able to meet him and his christian family just shortly before they were discharged. We talked mostly about our kids obviously, looking at what was similar between how our kids sicknesses started, surgeries, and what the future was like going forward.  It seems so God-like to have two families who have kids with such rare cancers (and matching diagnosis) to be right across the hall from each other. It won't be the last time we will get to see them, I'm sure.

Ellie has been on her chemo for about 10 hours and as far as what's can see she hasn't had much of a reaction to the drugs. Thanks to our new visitor (Pastor) Ellie got some good playtime in with someone aside from myself (something we are both thankful for). They will be doing a couple of blood checks at different intervals to see how much of the drug is in her system. She should be wrapping up this part of chemo around 2p tomorrow and the we wait for her to clear it...

Tuesday/Wednesday...from Carly
I shall do my best to update, I'm not there, but the amazing FaceTime has helped me feel like I'm part of everything!  I have seen the same doctor three mornings in a row, watched Ellie give him a shot, since she has her McStuffins doctor kit with her, watched him tickle her feet and even use his phone flashlight app to check her eyes. (Guess they've learned kids are way more interested in phones than flashlights!).  

Ellie has gotten sick a few times from her treatment, just after eating, but it doesn't seem to upset her.  She has continued with an upbeat attitude, a smile on her face and a song! 

We all know by know that Richard is the technical one...so forgive me if I say this all wrong!  The Methotrexate is leaving her system at the rate it's supposed to...which is a good thing...so hopefully tomorrow (Thursday) she will get to go home.  Home now is at the Target House, Richard got to move everything today.  They now have two bedrooms, a kitchen and a living room.  
He even got to cart his stuff up to the room in a Target shopping cart....I love it!

Ellie has continued to work with her new PT and OT friends, and from what I hear they are pretty fun!


Ellie and Richard have had a visitor for a few days, I can hear the relief in Richard's voice having Preacher there.  I am so thankful that someone else is down there helping take care of my family!

Tonight as I chatted with them, Ellie looked tired, and you could tell her tummy is messing with her.  But within a few minutes she had her new jammies on...not sure where they came from but she loved them, and she was happily playing with her new Barbies!  Never would have thought that Richard would be the one to teach her how to play Barbies, but I'm so thankful I have a husband who will do that!


Here in VA I am buried deep in t-shirt orders, which I'm very thankful for.  I'm trying to keep up with phone calls and emails, deal with these allergies, and get ready for Miss Sarah-Grace, who will be here Monday....OMG!!!! (ok I don't really use those abbreviations, but it seems fitting tonight)  I am trying not to stress, I am trying to be thankful for all of it, but I can feel it creeping up.  Part of it is my own fault, I'm too anal to let anyone else organize anything, and I will be the first person to admit that one.  The other stress I think just comes from not being there.  I've said it a million times, she's in great hands, but I feel like the most annoying wife in the world with my 20 thousand questions everyday.  Richard assures me it's fine, but I feel like a bother.  

Tomorrow is a meeting with a newspaper and then a doctor's appointment for me.  Then hopefully home to put these beautiful chubby ankles up.  

Words of Wisdom from tonight's Veggie Tales movie...
"Cast all your worries on Him, because He cares for you" 1 Peter 5:7

Thank you Bob and Larry for helping me remember I don't have to stress all this on my own!

Prayers, Praise, and Pink
Carly

Monday, March 18, 2013

Carry Me

Given the events of today and the next 24 hours I could only think about this song today.. This Is Where the Healing Begins


For the most part this week I really didn't think much about what was going to happen today. But when I woke up (not at 5a when Ellie woke me up, but at 7) all I could think about was how much time I had left in the day. I had 12 hours, it didn't feel like enough. Even though we've spent the entire week by each others side and going into the hospital wasn't going to change any of that it just felt different. I've gotten used to how our day runs and what I was going to expect out of each one. But not now, not (dare I say it) tomorrow.

We tried to Facetime Carly and Noah, and that didn't work. That seems to be the one thing that gets me while I'm here. I have a laptop, and IPad, and a Windows phone yet anytime I seem to want to accomplish something of value they all fail. And I know how much these calls carry Carly through the day (and for me as well). I get mad and annoyed when I can't make it happen and I allow it to get more of me than I should. It's 10a, 9 hours to go.

We ordered out for the first time since we've been here. Weekday food at the hospital is decent, but its down to bare minimum on the weekends. And today wasn't the day where I was feeling those cheeseburgers. Although after eating what I ordered it wouldn't of made much difference. Late lunch at 2:30, 4 and half hours left.

(I'll have you know the computer shut off on me right about this point... "In the name of Jesus, In the name of Jesus, In the name of Jesus..." (you Zion folk will get that part...the rest can keep on reading)

I figured I should pack, although it was odd (and hard) to pack from a "hotel" room to go stay in a hospital room. I gave Ellie just about anything possible to keep her entertained: 2 packs of Crayons, 2 coloring books, a box of Minnie Mouse toys, two talking stuffed animals, a pen, paper, shoes, and boots. Lets just say the only thing I heard for the next 2 hours was "I gotta go potty". And go figure, we've got her potty trained again and here we are back in the hospital. She's going to be so confused. So I packed and played intermittently at times thinking I only have so much time left to pack and at other times I only have 2 hours left to play with her. And now that we are in the hospital I know that's a misconception. There are two huge playrooms and a library right down the hall and we've been given free reign over any of it!

It was getting late so we tried to facetime mom and Noah before being admitted. Any guesses on whether worked....? Nope, sure didn't. Getting irritated I got on the phone with our Apple tech friends who pretty much couldn't help me at all. By that it's shortly before 7 and we need to eat dinner. Ellie: check, Wagon: check, backpack: check, suitcase: check. Made our way to grab a bite to eat and didn't make it to the cafeteria in time. I had to resort to feeding my princess a cereal bar for dinner. I felt awful and embarrased about it, but had no choice it was time to check in. We plopped on the couch with cereal bars in hand and thats when I felt it. O.K. I felt O.K. I couldn't think of a worry, couldn't tear up about her treatment if tried, the Lord told me it was o.k. and I knew lots of people had prayed for that.

So we made it to our room. In the midst of things that had to be done to get Ellie ready I saw her cry tonight. Either out fear and/or pain, I'm not really sure which one. I'm not sure how I held it together. Maybe it was not wanting to break in front of a bunch of nurses.. maybe. Even in the mix of emotion I could still see her looking at me. Even though she was scared or hurting I could see in eyes that she was trusting me. As if she said "It's going to be o.k. dad?" She was quickly consoled by the nurses and soon enough she was being handed new coloring books, stickers, crayons, a barbie doll, and some other girly toys. This place loves to hand out toys, we may need another suitcase to get back home..

Here we are now, she's started her treatment and there's only one thing we can ask..



"For the Lord you God is he who goes with you to fight for you against your enemies, to give you the victory"
Deuteronomy 20:4

Love.Always.
-Rich


Look Carly, I got the pictures to work! Woohoo!



Sunday, March 17, 2013

Storming

I wasn't quite prepared for how hard today was going to be.  Sundays are hard just because that was usually the only day our family was all together all day.  Its hard because I know how much going to church means to Richard and he's not there.  When I finally got to lay eyes on them this morning, I tried to keep it together  but I should really know better than to try to hide tears from my husband...especially when he can see me (not always the brightest "crown" in the box...sorry that was for my momma...I can't say cray-on right). I knew after today her world was going to change...or maybe not so much her world, but our world.  We knew this day was coming...I've been anxiously waiting for her to start treatments, but now the day is here and I don't quite feel ready.  Or I'm ready, I just don't know what to expect, I have an idea, but not a clue how she will react to the medicines that are about to enter her body and help her on her journey to recovery.  On a side note, as we were bagging up hats to donate to the hospital, I talked to Noah about what the medicines that Ellie has to take may do to her.  We talked about losing her hair and getting sick.  In typical Noah fashion, he matter-of-factly understood it all and said we needed to keep praying for Ellie until she felt all the way better.

Noah and I got ready for church...he attempted to put the same thing on he wore to church last Sunday and mean old mom made him change!  Luckily he picked his favorite green tie, because I completely forgot it was St. Patrick's Day...opps!  Off we went, and in true God fashion, on came a great song!

Noah's attitude in church is usually hit or miss when he's in worship with me.  Some days he's trying to lay down on the pew, hang on me and other days he's singing.  Thankfully today he was in a singing and happy mood, he was even clapping.  I take such great pride when I look over and he's actually singing the words to the songs.  

As Preacher started, my prayer was "please just let me make it through this today without tears"  I know people expect me to cry, but sometimes when I start I can't stop and I really don't like having attention drawn to myself...which is almost impossible in our new situation, I'm getting better and handling it, but its a process.  He began to talk about storms, and I giggled...didn't I just post that song, "Praise you in the storm"...and just listened to "Let the waters rise".  One of the first sentences out of his mouth was "The Lord will have his way in the storm", and went on to talk about what storms do in your life and the purpose of them.  What stuck with me the most was storms often detect things, it helps you find what you are capable of, what kind of character you have.  
What we are capable of....if you had asked me a month ago what we were capable of, I would have never imagined this.  I knew we were strong, I knew we had a strong belief in our God, I knew our lives were going to get crazy with 3 kids...I had no idea we were capable of separating our families for this amount of time and know this is the right thing to do.  I had no idea I would be capable of giving birth without my husband there, but this is what I'm going to do, because I have always asked for the Lord's will to be done in mine and my children's lives (be careful what you pray for...or should I say, when you pray for it...realize it might not be what YOU think His will should be).  I never knew I was capable of reaching so many people's lives by putting my heart down on paper/screen. 
Preacher said so many other things that touched my heart today, thank you Lord for using him to share what I needed to hear...that yes, this is a "storm" but God is going to have His way, and he's going to use it for good.  
I hugged my Preacher tight because I want him to give that same hug to my loves when he sees them tomorrow.  Part of me is super jealous because it won't be me there, I'm pretty sure Sarah-Grace wouldn't appreciate that car ride...or myself!  But if I can't be there to hug my husband and just give him support, Preacher is a great alternate.  I hope that they enjoy all the goodies my amazing church family is sending down, I'm sure Ellie will LOVE opening all her presents, she's gotten so good at it!  

A quick phone chat with Richard helped me cry all that out, and reassured me it was all good! And off we went to play with friends!

Please say an extra prayer for my princess and her knight in shinning armor tonight.  They are all checked into their hospital room, and after talking to Richard about it, it sounds fantastic.  She has her hospital room, but also a family room...thank you St. Jude's for the amazing gifts you are offering to my family, and thank you Lord for leading us there.  She will start receiving fluids tonight and then start her chemo tomorrow.  The anxiety I felt earlier in the day is gone, Richard says he doesn't feel anxious right now either.  I don't know how I'll feel tomorrow...but that's tomorrow and I can't worry about it today!

And there's no need to worry because....




The Lord will guide you always;
    he will satisfy your needs in a sun-scorched land
    and will strengthen your frame.
You will be like a well-watered garden,
    like a spring whose waters never fail.

Isaiah 58:11



As the snow falls again tonight, I have one more thought from church this morning.  When the snow falls and is heavy on the trees, we learn quickly the trees we thought were strong may fall down, but we also see the trees we didn't think were so strong, are still standing.  Please continue to pray, that as we ride through this storm, and the snow falls and the waters rise, Richard and I and our entire group of family and friends, will stand strong and praise Him, who has orchestrated this entire storm for us.

Prayers, Praise and Pink
Carly

Saturday, March 16, 2013

Day 6 - Busy Blaines (in TN)




Ellie has decided that she isn't going to sleep much at night. I went to bed shortly after 1 and at that time she was laying in bed awake. You couldn't help but kiss on her (she was smiling at me)! I fell asleep, I'm not really sure about her though. She woke me up on many occasions between then and 5 a.m. At one point I started to play with her without looking at the clock, you thought I would have learned from our last experience with the TV. Once I looked at the clock it was 3:20 and I said goodnight Ellie... go to sleep! She screamed...and screamed... I slept. By the time my alarm went off at 530 she was asleep, but I HAD to get up, we had an early start for the day. I let her sleep as long as I could before I woke her up and stuck her in the tub real quick. We did Face-time with mom and Noah while in the tub, then we rushed out...

Fri, if you remember, Ellie was getting her port. We checked in at the front desk and headed over the the Chili center. It wasn't long (3 seconds to be exact) before Ellie had someone wrapped around her finger. Then another, and another, and another. Practically everyone except the doctor who was doing her procedure was playing with her at some point. That's o.k. he should be focusing on other things. :) .. Once she was sedated, which was easier to handle this time than last, I was rushing off to my donor apt. which I was already 30 mins late for. 

I appreciated that everyone in the blood donor room took my time constraints seriously. I only had until 11a until Ellie was supposed to be in the recovery room. Dr. Wright met me in the donor room and as I was being stuck with a needle we went over the consent forms for the upcoming chemo treatment. 
There wasn't much new info there that we hadn't covered in our previous conversation. The biggest difference just that Ellie will go into the hospital Sunday night instead of Monday. She has to get a lot of fluids in her before the first med so she will go at 8p.m. Sunday night so she get most of her fluids while she is sleeping. No later than I finished my bloodwork and signed my release I got the phone call saying Ellie was now in the recovery room. Perfect timing, I was on my way.

 Ellie woke up fairly quick from the anesthesia and was eating her cookies in no-time. Her procedure went fine, all you can see at the moment is the bandage that covers it. It's on the right side of her chest just about under her collar bone area. I didn't hear anything back about the results from her hearing test. I'm going to go with no news is good news right now. We grabbed a quick bite to eat and headed to the triage for Ellie's blood work. As we Got there we found out they were running behind...an hour behind. Glad to know I crammed all that food down my throat to Just sit back and wait. Finally, our time came. It's funny how the nurses are always shocked when Ellie doesn't budge when she's stuck with the needle. 

EKG followed and everything was fine. They were not looking for anything, just getting some base line information before her chemo starts.

Once we were out of there we headed back over to see our doctor just so she could look at Ellie's port before we were done for the day. Everything checked out good and we were off.


Finally, we could check out this 72 degree weather we had been anticipating all week.

 Back to our room we went. Ellie was asleep in two minutes and now I'm trying to plan our escape for adventure on Saturday. 
--------------
Among many, one family I met here is the Morris's. Elijah Morris, who goes by Regen, is a 12 yr old boy with Anaplastic Astrocytoma. I haven't looked that up but the family told me that he has tumor covering approx. 80 to 90 percent of his brain. I was humbled immediately. As I sat next to Ellie who was laughing and talking, he was in a specialized chair and was essentially immobilized. Regen was diagnosed in Nov and his symptoms happened almost overnight and they've been hospitalized since. Please pray for this boy and appreciate what a blessing it is to have our girl in the condition she is in ( and while you're at it appreciate your condition as well). His Facebook page is called 'Rootin for Regen'.
1 Thessalonians 5:17 "Pray without ceasing"

Prayer, Praise, and Pink
-Rich


Friday, March 15, 2013

Feeling Full

I'm sure Richard will post again tonight with the latest Ellie update, but I just had to share the amazing feeling I've had today.  To be honest Richard and I have had a tough few days.  The distance, the new circumstances (just being apart for this long), the appointments, my inability to comprehend anything at this point...I just felt us being snappy and unhappy (sorry I had to rhyme).  I felt like we weren't on the same page, possibly letting doubts get the best of us.  I'm sure we will go through this more than just once, but this first time was hard.  Then Richard said something last night, that showed me we were right where we should be and we were still a team (don't need to go into details...but it was perfect).  I felt peace spread over me last night and this morning I woke up full of the most amazing spirit.  The sun was shining, it was Friday, and I have an amazingly strong family.  As I drove Noah to school this morning, this song came on, and like always it was perfectly timed.
I had to let Richard know right away just how incredible I felt and that he was the reason, but he was super busy with Ellie's day of appointments.  I just felt like this family can do anything.  Yes, we are going through something no one wants to experience, there are going to be a lot of hard days ahead of us, but we are going to be okay.  As I read about Ellie's day today in his email, I could "hear" the pride in Richard's typing of the strength of his daughter.  She is amazingly strong and I know that God is using her to show the world just what He can do.  I'm honored to be her mother and Richard's wife.  I can't wait to see the road ahead of us...I know I try to not look past today, but for the first time today, I was excited about the future, about what my girl and my God were going to do together.  It was a great feeling!  
I busily spent today working on more t-shirt orders...I'm continually amazed at that as well!  Finished up a hair bow holder for Sarah-Grace's room (Mommy made...probably the first thing I've done for her, I haven't even made her a hat to wear home yet...ahhh!)
I cleaned up some more of her room and then some friends showed up!  I have missed work a lot.  I miss my friends, but I know being able to stay home is helping with this pregnancy and my diabetes as well!  My amazing friends at school collected diapers and wipes for us.
This is a beautiful sight to any parent with a new baby!  *Side note....you can tell I'm an avid Target shopper/supporter.  And Richard and Ellie and myself eventually will be moving into the Target House at St. Jude!

Some other fantastic gifts came!
I know this beautiful 31 bag is going to come in handy when Ellie has to be in the hospital   It's all packed up and ready to make the trip to Memphis with our Preacher on Monday, who is going to visit Richard and Ellie!
And this sweet necklace!  I adore it...my whole family all in one little necklace.  Inside is a pink princess crown, a cross, a ladybug, the sign for "I love you" each of my children's birthstones and a charm that says "faith".  Inscribed in the back is the world "blessed"  There couldn't be a more perfect word for this life.
I hope that when I have another not so full day I can look back on today and remind myself of this feeling that I have been filled with!  I hope it's contagious, I hope by just reading this you are filled with the God's love and you are reminded just how many blessings He gives you everyday.  
Now to figure out how to get this one off the couch and in his p.j.'s....we need Daddy!!

"Be still and know that I am God" Psalm 46:10
Prayers, Praise and Pink
~Carly

Thursday, March 14, 2013

Princess Strong Update: Day 3-5

As you know Ellie had another brain and spine MRI Tuesday as well as a Lumbar Punture. Ellie's brain looked just as the doctors would have expected. Her little peanut tumor is still hanging out, but other than that her head is getting a lot closer to normal. Her spine MRI was also clear of any tumor or mass. Her Lumbar Puncture results verified that Ellie has tumor cells within her spinal fluid. In other words they are floating around in the fluid but are not attached to her spinal cord. This means she falls into the high-risk category and would follow the respective treatment. This means a couple different things. Ellie is pretty likely to have another brain surgery (very roughly in 2 months) to try to remove the rest of the tumor. She will go through approx. two rounds of chemo and then they will look to see how the tumor has reacted and what her spinal fluid is showing. Also, she will go through the high-risk consolidation treatment. At 8 on Friday Ellie will get her central line (more permanent IV) put in place. We decided to go with the internal port. She will be sedated for this procedure and also for her hearing test which follows directly after the port placement. While she is away Dr. Wright will meet with me while i am donating blood so she can go over the consent forms. On Monday Ellie will begin her chemo treatment. The chemo regimen is also attached to this e-mail. You should find a chart a few pages into the doc that tells you the medicines and which days of each cycle she will get them. Her first medicine is through a 24 hour IV. She (or should I say we) will be in the hospital approximately 3-5 days to allow the medicine to clear her body. Her next medicine will be given on day 8,9,10. Some portion of these treatments are likely to make Ellie nauseated or sick. Around day 16-17 we should expect Ellie's hair to begin to thin. Around day 18-19 is when Ellie's neutrophil (white blood cell) counts are xpected to drop and become low (aka neutropenia). She will most likely receive a blood transfusion at that time. A lot of people had told me they were willing but at this time we do not any blood donations from anyone, we'll keep you on reserve though :) At this time there is no immediate plan for radiation treatments, Ellie will need to be at least 3 before receiving any such treatment. Ellie will not be getting the "High Dose Chemo with Stem Cell Rescue" treatment that we previously talked about. In talking with Dr. Wright about that treatment she felt it put Ellie at too high of a risk for infection because it was such a high dose of chemotherapy. It may have or may be an option when she is older. Other than that, here are the other notes from our busy day on Wednesday. Day 3- March 13th 2013 OT, PT, and Speech Therapy followed by visit with Dr. Wright Occupational Therapy - 8:00 am Ellie did great with her occupational therapy assessment. The therapist thought she was on track with her skills but will be visiting Ellie 1 or 2 times a week to monitor her progress as her chemo treatment begins. Speech Therapy - 9:00 a.m. Most of this assessment was based on me answering questions about how she talks, type of language she uses, and her comprehension skills. Ellie scored 120-124 on her speech assessment. An average score is about 100 with a high/low range from 85 to 115. Ellie is above target and speaks similar to a 3 year old.. who would have guessed? Haha. They suggested trying to get outside of the hospital and room as much as possible, do normal everyday things as much as we can (store, park, zoo, museum) to keep her exposed to new words and environments. Talking to and being around sailings also helps a lot. Speech therapy will revisit Ellie in approximately 2 months to check on her progress. Physical Therpy - 10:30 a.m. Ellie enjoyed the physical tests the instructor asked her today, she had fun playing. Angela (PT) said that Ellie performed well on her activities and that she just needed to get her strength built up again. PT will visit Ellie 1 or 2 times per week to work on and follow up with her strength building. Thank you all for continued prayers and taking care of my family while I am away. love you all!

Our New Life...temporary of course!


I have no idea why this song has stuck with me today, but I can't get it out of my head (favorite line "When you are running on empty and you can't find the remedy") .  For the first time in a long time today (probably because I am never alone in my car) I turned the radio up very loud and sang very loud.  I also cried a lot while singing, which isn't easy when your car ride is only 5 minutes long...gotta learn to wipe those tears quickly!  In my new found "stay at home mommy life"  I get to drive Noah to preschool and pick him up.  He really is enjoying his new school, especially the fact there is another Noah!  I am so thankful this has been an easy transition for him...probably the only thing that has been easy for us.  

Adjusting to this "new life" is hard.  For one thing, this house is way too quiet.  Noah loves to talk, but even after a while he stops talking or goes to bed.  My laundry loads have been cut in half, and whenever something of Richard or Ellie's pops up in the washing machine, I feel my heart tug...pretty sure I just washed the last of it, and that's hard too!  I don't really cook...not that I mind all that much...but I would really like to sit down as a family of four and have a real dinner...I'd even suck in up and defrost something out of the freezer and "pretend" like I'm cooking.  I stay up way too late now, probably because I really don't want to go lay in the bed by myself.  Plus being 37 weeks prego, its not like I'm sleeping all that well or comfortable.  Our world revolves around "what time is it in TN" and FaceTime...which I am beyond grateful for.  Starting my day seeing those two faces helps carry me through.  The one evening we couldn't get it to work, I was miserable. 

I just miss them so much!  I feel helpless at times, not that she has started anything yet, but she's two.  She throws tantrums, she yells no, and I'm not there to put her hiney in time out (never thought I'd miss that!)  I hear the stress in my husband's voice and see it on his face, and I know he won't say it, but this is hard on him.  He gets no break, besides when she's sleeping.  I feel sorry for him that he has to explain things to me over and over because my brain isn't working and cell phones aren't the best communication devices out there...no matter how much you pay for them. Then he has to explain everything to lots of other people.  I know he has to be overwhelmed and I so bad want to be there just to relieve that burden for a few hours.  

While talking to a sweet friend last night (which I'm kinda wondering if we should be siblings because we are so much alike)...I said I'm not afraid of Ellie's diagnosis, I know it's rare, I can't change a thing about that, that's in God's hands, I'm not having trouble dealing with the fact my child has brain cancer.  I am having a hard time dealing with the fact I'm not there. That in a few days she's going to start treatment and I'm a million miles away (ok so not a million...but it feels like it).  I can't hold her, and as good as our "hugs" are through the iPad, its just not the same as holding that little wiggly nut and telling her its going to go okay...or as she would say "it be all fine".  I can't hold Richard....not that he's wiggly...but just to be there and squeeze his hand when he's ready to fall apart, would mean the world to me.  

Our "blogging plan" (and I did not make this plan...it was all him!)  is that Richard will try to fill in the "what's going on with Ellie" parts. I'll just keep doing my crying/typing therapy thing.  We may overlap a little, but its okay...he could be typing one up right now for all I know (hi honey).  

Again I just want to thank everyone for their prayers, love and support.  As I have been immersed in the tshirt fundraising world these past 3 days, I am continually overwhelmed at the support that rolls in.  The emails I get are amazing...not just because they are financially helping my family but their spiritual support gets me through every day.  I don't know what I would do without the facebook messages and emails and texts that just say "we're praying", "you're an inspiration", "we love you".  I don't always respond, but know that your love helps make every day a little easier.  

A quote sent to me today from my "should be sibling"...

"Learn to see everything you go through, even the most painful circumstances, as coming from or being allowed by God to touch your life.  When you do, you can anticipate He will use your difficulties for good, turning them into something beautiful" - Dr. Charles Stanley

Thank you all for being a part of our something beautiful!

Prayers, Praise and Pink
Carly

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