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

Super-Daddy & the Spine..... Day 1

Happy Anniversary CB! (I can still say it, it's still 11p here)! Just an FYI I started this post before Carly posted hers, so that gets me brownie points, right?

I love my wife. Her heart, and everything that goes with it (just not everything all at once sometimes) Wink, wink, love you Hun! We are going to get through this thing together even as apart as we may be for we are joined together in The Lord.

Today was our first visit with our real Dr's. mostly a lot of base-line check-ups, all of which Ellie has mastered. The doctor pulls out the thermometer and Ellie's arm is up in the air ready. Blood pressure, she's already pulling up her sleeve and saying "it's going to beep, beep". Stethoscope, she's already pointing to her heart. If she didn't like to sing and dance so much I would say she's going to be a doctor. And Ellie would be mad at me if I didn't show everyone how fabulous she looked today.

We talked with Dr. Karen about what to expect with tomorrow's MRI and lumbar puncture, which brings me to my next point. There has been some information that I don't think has reached everyone, and wasn't intentional. If you remember Ellie had a spinal MRI done just before her surgery on Feb 14th.  On that MRI there was a place towards her lower spine which Dr. Jane and other UVA doctors would only label as "suspicious". What does that mean? There is a chance that Ellie's tumor could have metastasized, or in other words spread. Ellie is having another Spinal MRI tomorrow (along with another brain MRI...well today now) to better clarify this "suspicious" area. I debated leaving this information out because I didn't want people to be caught of guard by this information, but we need all the prayers we can possibly get. So I apologize if anyone feels they left out of this information. While the next 4 months of Ellie's treatment are all but set, the results of her spinal MRI will determine what happens after. If they feel her MRI shows something they will complete a lumbar puncture shortly after the MRI, keeping her sedated. They will test the spinal fluid to confirm what they are seeing in the MRI.


Her brain MRI will be more detailed than the previous to get a better analysis of the tumor size, location, etc...

Now that that was done... LUNCH TIME! Grilled Cheese for Ellie!

At some point during our meeting with the social worker Ellie decided to point to me and proudly say "SUPER DADDY"! And as you can imagine I didn't smile at all... Yeah right! Then she promptly followed with a loud "SUPER ME"! Oh, I love my girl. And not to mention her continual sticker extravaganza... Check out my pants (and don't worry, the social worker had her fair share as well! Hehe

We headed back to our room after a short wagon ride, which Ellie loves! Eventually got some cheeseburgers for dinner and ended the night with our first ever Netflix movie "Tinkerbell".

I think that was the first movie Ellie has ever sat through in its entirety. That was 4 hours ago, goodnight!

"Be strong and of good courage, do not fear nor be afraid of them; for The Lord your God, He is the One who goes with you. He will not leave you nor forsake you." Deuteronomy 31:6

Prayers, Praise, and Pink

Rich

I'm not too sure where I was supposed to add this picture in for Richard (I'm the blog assistant this morning!)  But I LOVE this picture of my silly girl!

Happy Anniversary

Eleven years ago today, I went on my first date with Richard, to a horribly gory war movie...what I would give to watch that movie again with him tonight...even though its way past my bed time.  Seven years ago today, I married by best friend...and tonight I miss him dearly.  I know he's with a girl who needs him more than I do at the moment, but it hurts to not be able to just hug him tonight. Seven years ago, I'm pretty sure we never envisioned this as our future...for one thing I only wanted two children and I swore up and down I would not have any children with him while he was still in retail.  There I go trying to plan stuff again...here we are almost 3 kids later and he's the store manager.  When you look back to seven years ago, I am amazed at where we've come from, amazed at what we've accomplished together, and so grateful to God for leading our path to this moment.  

Best day ever!

Honeymoon in TN...go figure Richard is back in TN on our anniversary!

I love this man so much today...I love how much he loves the Lord, I love how much he loves his family and would go to the ends of the earth for them, I love how he knows the exact time to say "Carly, Stop it" (can't believe I admitted that...I must be sleep deprived).  I love that he searched out St. Jude's for his daughter, I love that when they accepted her, there was no doubt in his mind that he would go.  I love that he puts hair bows in her hair everyday, even though I'm not there, and wears his hair bows proudly on his shirt everyday. No, this may not have been the "dream path" when we started this journey 11 years ago, but it's such a beautiful one.  Without all the twists and turns, who knows where we would have ended up.  I thank God for saving us both, for changing our lives forever, for helping us see how much he loves us and that if we just trust in him and give him all the glory, honor, and praise, he will take care of the rest.  I'm not too sure where this journey is going to end, however I do know that we are not walking it alone.

I love you Richard, thank you for our children, our laughs, our tears and smiles.  Thank you for loving me no matter what! Love you always!

On an Ellie note, she had her first appointments with her neuro doctors today.  Richard said she was fantastic.  Smiling and was her typical Ellie self, chatting up everyone!  She is enjoying riding in her red wagon with Daddy everywhere, is throwing some great temper tantrums and kept her pull up dry all day (what a great combo)!  Big day of MRI's tomorrow, keep on praying, tomorrow will help determine some more specifics of her treatment.  

Prayer, Praise and Pink

~ Carly

On a jet plane

What a bittersweet day.  They are gone, not for good, but in a few minutes they will touch down in Memphis, TN and our lives "apart" begin.  We are only physically apart, and even that has been made easier by some amazing people.  As we speak (I type) I eagerly await a skype call on our new iPad's to see my girl and her Daddy.  I say it every day, but I just can't believe the love that has been poured out on my family.  Not only are there new iPads, cases for them, gift cards, a netflix subscription  toys, tiaras, cards, food and numerous financial contributions, there are prayers everywhere for my family.  On a daily basis cards roll in from people I don't know...its an overwhelming feeling, in a good way, to know our lives, our story, our blessing is touching other peoples' lives.  

Yesterday we opened the doors of our house for friends and family to come by and say hi/bye.  I will be perfectly honest, at first I was not excited by this option.  I wanted to lock my children in my house and hold them all day long.  But as more and more people came through, I realized how selfish I was being. So many other people love us, care about us, and support us.  Plus I'm sure if it had just been the 4 of us we would have ended up yelling at each other or someone would have been in time out (possibly me).  I remember my mom telling me once that sometimes she gets so caught up in the "stress" of things she forgets to just enjoy the moment.  I tried to remember that...so what if their bags aren't packed...just enjoy the love that is coming in.  Once I got over things like getting my oil changed, and getting the Christmas lights down, I began to really enjoy myself.  

As we finally laid down last night/this morning to pray...I couldn't do it, what do you pray for when you family is starting the journey ours is?  Every time I tried to speak, all I could do was cry.  God finally gave me the words, I prayed for all of you, that all who read would feel God's love through us.  I prayed that someone's life would be changed by us, someone would find their way into a church because of something we've said.  Of course I prayed for my family, my son, and my daughter, I know we can do this, we just can't look past today.  

"Peace I leave with you; my peace I give to you.  Not as the world gives do I give to you.  Let not your hearts be troubled, neither let them be afraid." John 14:27

This morning came way to early, like I knew it would and as our house began to motivate, I felt tensions rise.   We put on our pink, our best smiles and didn't even bother with mascara.  As we got closer to the airport, this song came on the radio.....(just got my skype call :) Thank you my SHS friends!)  They are safe and waiting for their ride to the hospital!  Back to the song!  

Richard grabbed my hand and squeezed hard...I don't know if I've shared before that one day while falling apart, I heard that still, small voice say "I'm preparing you for a miracle".  

As we got out of the car at the airport, I saw people in pink

(I was in no way prepared for this day, or to take pictures, so I'm borrowing from those who did) 

These beautiful Old Navy friends got up early to see us, Ellie was so happy to see her "friends!"

Here are a few more pictures I borrowed :)

 So you know rule follower Mommy was having a heart attack at this point, while Daddy was trying to get her to princess wave!

I never knew what it was like to have a church family, until the Lord brought us to Zion, thank you Preacher and Mrs. Cindy for helping us every step of the way! (and everyone else at Zion!)

 Practicing their flying skills!

 Last minute snuggles

 I just LOVE this picture!  Thank you cousin Cameron for rocking your pink today!

 Not quite ready to let go yet.

Princess and her knight in shinning armor!  I know how hard this moment was for him, and go figure, he knows the security person on the other side...thank you for making that moment easier for him!

Monkey and Ellie all ready to roll!  

As we drove home, I again felt that peace that my God is so good to give me.  I knew they were headed to the best place they could be, I knew I had my Noah to help me out, he is after all one of my best friends.  I knew that my husband is so in love with his daughter that he will protect her to the ends of the earth. And I knew that St. Jude's was welcoming us with open arms.  

Noah and I have been sitting in a very quiet house this beautiful sunny afternoon.  Both decompressing from the past few days.  I ventured back to their bedroom for a moment...fixed all the animals, just so they'd be ready when Ellie gets back!

I wish I could have sent them all with her, but there was a weight limit on the luggage after all! And I know Noah will guard them for her, just not tonight...I see a slumber party in my bed in our future!

Prayers, Praise, and Pink

~Carly

Listen to your kids

I have 20 minutes of non moving time...I'm hooked up to baby monitor listening to Miss Sarah-Grace. She's not feeling these straps! (Nothing is wrong, I have gestational diabetes, so this is just part of the routine!).
Yesterday we got about 10 inches of snow, which was beautiful, but also caused some power outages. No biggie during the day, it came on and off all day. Finally around 5 out it went for good. I began to fall apart as we talked about where we were gonna go, what were we gonna eat etc...I didn't want to.spend one of our last night's together somewhere else.  I cried because I'm so good at it, praying the power would just come back. As it got darker we all located flashlights and lit the dusty candles from my wedding. I fell apart again and told Richard I didn't want him and Ellie to leave.  I have not tried to hide my tears from my kids, especially Noah, he's just as emotional as I am, and I want him to know its okay to be sad and cry (can you tell I'm a school counselor?!?!) Noah came into the kitchen and said "Mommy Daddy and Ellie have to go, and we have to stay and take care of the new baby, but a little while after she gets here, we'll go see them.  It will be okay" followed by a big hug. Glad someone was there to remind me of my own words. Not 30 minutes later the power came back. Thank you Lord!
This morning I awoke with peace, as I listened to the kids bedroom door knob jiggle. It was Ellie, she can't get door knobs open, but today is the first day she has been able to get out of bed on her own. That was the one thing she has been struggling with, and this morning, 3 weeks to the date after her 2nd brain surgery, she did it. I opened the door to a beautiful "Good Morning Mommy!" I love her. I sure am gonna miss her, but I know this is God's plan. He told me this am that Sarah-Grace was timed to help me through all this.
Thank you all again for all your prayers and love.  We are surrounded by amazing people! I have a great song to share...not sure if I can from my phone....nope you'll have to wait!

Miss thing is almost done! Enjoying the rest of today with my family!
Prayers, Praise and Pink
Carly

Reality Check

We have decided that St. Jude's is the place for Ellie.  We made the phone call and Ellie and Richard fly out Saturday morning.  (this isn't gonna be an easy one to type)  The plan I had started to create in my head on Sunday is pretty much what is going to happen...for now at least.  Ellie will have to stay at St. Jude's for 4 months during her chemo and radiation treatments.  I'm not exactly in "flight shape" being 36 weeks prego so Richard is going now.  We are splitting our family...what I didn't want to do 3 days ago...I know it's the right thing...but the hardest.  We talked to Noah to try our best to explain what will be happening.  Teaching Noah that Ellie has a "tumor" in her brain was a very weird feeling.  We explained that she has to go to a special hospital for kids (of course he then argued she's not a kid) and be given lots of special medicine to try and make the tumor go away.  He began to cry, not out of crankiness but out of sadness and fear and said he wished his sister wasn't sick and it was scary. Another very hard moment to live through, but we did it, together.

Since we said yes..(not to the dress...that would probably have been much easier) things have happened very fast.  Flights have been scheduled, baggage vouchers have been FedEx'd, things are starting to be packed.  How the heck do you pack your two year old and husband up?  Mom's always know what to pack...I'm at a loss.  So in an attempt to feel a little human, Noah and I took off for our favorite store to get some stuff for our travelers.  Maybe I felt like if we bought some fun stuff it would feel more like they were going on a fun trip, instead of a very long medical trip.  Target usually brings much joy to my day, I usually end up with withdrawals when I haven't been there in a week.  After our routine potty trip right as we walk through the doors, we set off...list in hand.  All the groceries I thought to buy, all I could think was "there's only going to be two of us at home...we don't need that."  And it's not like they won't be here for a few days...Ellie won't be back for months.  Made it through the food with no tears.  Then we turned the corner and there was all the Easter stuff.  I won't see Ellie at Easter, Richard won't see new baby Sarah-Grace's (we picked a name by the way!) first Easter...tears coming!  Next came the suitcases...the urge to buy her a big old Dora suitcase was strong...then I was sad she even needed to own a suitcase (I didn't get the suitcase.)  As we browsed the stationary isle to find some paper and envelopes for Richard to take, I came across these super cute Pirate birthday party invites in clearance.  Noah wants a Pirate birthday party...then I realized I wouldn't be around for his birthday in June...more tears.  The reality of what our family was about to go through was sinking in more and more with each aisle. It was all I could do to get through check out without falling apart.  

Since we've made this choice, I have tried very hard not to think about the things I am going to miss or the things Richard is going to miss.  Every email I get about something else St. Jude's is doing for our family, I am so thankful for them, but sad that I won't be there with them to experience it.  My heart aches thinking Richard won't be here for the new baby, but so thankful for family close by to step in.  I melt thinking about what hair bows to pack for my girl...oh her hair, next time I see her will she have any...good thing her Mommy makes really cute hats!  See this is why I try not to think about it, because it hurts so bad.  This house is going to be so empty without my sticker crazy, dancing and singing fool (no not Richard)

Even though Ellie and Noah are constantly picking at each other, I try to remember this isn't going to happen again for a long time.  I am trying to suck up every minute of her I can because I know just how much I'm going to miss her while she's away.  Not being able to hold her when she's sick or having a bad day, not being there to learn all the stuff they Richard is going to be introduced to, when she starts to lose her hair - not being there to add a hair bow to make her feel beautiful - this is probably one of the hardest things ever. I know we will learn our strengths and probably have to work through a lot of weaknesses. 

"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 Corinthians 12:9

In spite of all this, I am encouraged every day by those around me.  All the messages I get, texts, emails, just letting me know that we are helping others.  We are helping people see Christ through us...that's such a blessing to me.  The words don't always come out of my mouth right, but when I write I feel like I can share. I can share our story, our love, our God who is continually watching over us.  He isn't giving us the easiest path, but I know he's going to be with me every step of the way.  Every time Ellie has seen me cry, she comes to tell me "I wuv you Mommy"....something she has never said before she got sick.  He is always finding ways to assure me that I am going to get through this, with a lot of tears but a whole lot of joy.

Ok so Target wasn't a total bust...

  It's a princess piggy bank :) oh and that's her piggy nose!

Thank you again for all the cards, presents, emails, phone calls, texts, and financial gifts.  We are continually grateful and wish we could reach out and thank everyone of you.  Please know that you are helping us everyday!

Prayer, Praise and Pink

~Carly

P.S. To all my VA friends...enjoy your snow day!!!  I know we will!