Ellie and I went to pick up Noah from school today, he spent the night at a friends house last night, so we were pretty excited to see him again. We were greeted with the usual smiley faces at school, except Noah's. He wasn't happy to see us, he wanted to stay with my friend, which isn't a surprise. As much as this house is centered around Ellie right now, I'm sure he enjoys his time away. After him "running away" a few times, we finally got all his stuff and headed for the car. Once loaded up, the pouty pants began. He didn't miss us, he only loves a little bit, our house is no fun...etc. We've been down this road before, so I tried to not let it bother me, he is only 4 after all...and has no idea what he's saying is hurtful. He began to cry and cry and cry, uncontrollably. I told him I loved him and since I was his Mommy I get to take him home because I missed him so much. That's when it stung as he said "you're only my Mommy when you're with me"....I fell apart. Richard would remind me at this point he doesn't know what he's saying, but Richard wasn't there. It probably hit so hard because I haven't really felt like his mom in over a week. This kid has been bounced all over....with people whom he loves and love him, but I miss my son. As I tried to hide my tears in the front seat, Ellie saw right away I was crying and of course pointed it out. Noah was still bawling at this point, then he dropped his George monkey which then turned into even bigger sobs, that I cried right along with. Ellie joined in on the sob fest for a minute or two, then proclaimed she was all done crying...wish it was that easy for all of us. Noah eventually stopped and was excited to be home, especially coming home to a pile of cards to open.
I, on the other hand have had a hard time stopping the tears today. I don't cry because of what my daughter has been diagnosed with, and I don't cry because I don't understand why, and I don't cry because I'm scared of what is going to happen...I'm not sure why I cry (my guess is the 35 weeks prego thing). I cry because I don't know what happens next, I cry because I can't make a schedule, I cry because my family is having such an impact of those around us and I am honored. I cry because I'm overwhelmed at the amount of help we've been offered, and at this moment I just don't know what help we need, I have never been down this road before. We do not know when we start treatment, for how long or how often...and right now that's the biggest struggle I face. So if you ask us what can you do to help, please don't be offended if we say "we don't know" because honestly we don't. Right now we just need prayers, for Richard and I, to continue to work together and not take our frustrations out on each other or the kids. Prayer for Noah, as we've had to make some pretty big and difficult changes for him as well. Prayer for my family who may be struggling with understanding why this all is happening.
Wanted to share my favorite song to listen to any time I start to fall apart
"Humble yourselves, therefore, under God's might hand, that He may lift you up in due time. Cast all your anxiety on Him because He cares for you." 1 Peter 5:6-7
I just wanted to take moment to say thank you. As Richard and I sat this evening opening the numerous cards and packages that came in the mail today, I had to take a deep breath and try not to cry. The outpouring of love for my family is overwhelming. I know my little girl touches my heart, but I never knew she would touch so many other lives. I knew my blogging was good for my family, but I never imagined the lives God would allow me to touch. I feel honored to help others find their faith again.
The amounts of money that have been raised so far are astounding. The gifts for the kids continue to brighten their days. The meals that show up daily and not only delicious but filled with such sweet spirit. I've never been good at asking for help, always trying to fix things myself...so this is just amazing to me. I will never be able to personally thank everyone who has prayed for us, sent us cards, fixed food for us, but please know that it is appreciated.
So her majesty had her PT and OT evaluations today.
We geared up in our new princess gear and headed out!
It was so nice to feel like we were actually doing something for her today, meaning something to help her on her road to recovery. Not that I'm too sure what the road entails, but today was a start! She did great on her OT eval, thinking she was the funniest thing ever, and even learning a thing or two from the OT. No OT needed! We then waited for our PT eval. As we sat waiting for out next appointment I watched my little girl play with toys, jabber her jaws (apparently she is making up for the two weeks she didn't talk) laugh at the therapy dog and talk to the other kids. You look at her smile and you'd never imagine there is anything wrong with her. Her energy and spirit that make her who she is, have finally returned and I am so grateful for it. I know these are the qualities that are going to help her (and all those around her) through every step of her journey. I have no idea what chemo will do to her little body...something else I can't bring myself to research yet...but I don't think anything can crush that positive spirit and smile!
It was decided after her PT eval, that it would be beneficial for her to receive services, once a week, while we are still in the area. I was very proud of my brave girl, for doing almost everything she was asked to do, even when she got scared. If anything this ordeal is helping her be much more comfortable around new people.
In one of our packages today was a little card that I think I should have in my hand at all times. It reads...
Waiting...
When I am impatient,
Lord, help me to be calm.
When I get discouraged and feel alone,
help me to remember that you are with me.
"Those who wait upon the Lord will renew their strength." Isaiah 40:31
Before I share with you my anniversary story, I have to share with you the highlight of my day. Ellie and I dropped Noah off at school this morning and then headed to the doctor's office to get her stitches out. I felt bad because I forgot to give her meds this morning, and now I was taking her to get her "squares" as Noah calls them taken out of her head...I didn't know if it would hurt or not. We walked into the pediatrician's office to find an entire office dressed in pink. Not only were they dressed in pink, they all had hair bows, even the doctor. Ellie immediately grinned when she saw the hair bows, I know she doesn't quite get they are for her, but it sure puts a smile on her face. She was then given a present (which she is very into at the moment). Every nurse took the time to say hi to her and stop by the room to wish us well. Of course oh oh ah ah (the pink monkey's name) had to have her stitches taken out first and then Ellie. Like the tough cookie she is, she just sat in my lap, still as can be while the doctor cut out 12 stitches. Ellie thanked her in true Ellie fashion and proclaimed...no more "ditches!" Thank you Orange Peds for making our day...you brought a huge smile to this momma's face.
As I sat in church yesterday, surrounded by family and church family, I realized it was February 24th.
This day marks my 5 year anniversary of giving my heart to Jesus. I can remember that Sunday morning like it was yesterday. I was pregnant with Noah, Richard was at work, and my last living grandparent had just passed away. We had just started attending our church because I wanted to raise my children in church. It had been a long time since either of us had been in church on any type of regular basis. I was still going through the motions of church. In fact it's only by God that I was there by myself, because usually I wouldn't attend without Richard. Richard had just been saved the Sunday before while visiting his brother's church and I was at my grandmother's funeral. I hated that I had missed that moment with him, but still didn't completely understand.
Sermon was done, invitation was given, one girl had already gone up and Preacher had already talked to her. He put out the invitation again...heart pounding...my brain realing...."I can't go up there, what will they all think, Richard's not here, I don't know what to say when I get there"....heart still pounding....head saying stay put...heart saying move. And I did, I remember hearing my heels click on the floor on my walk up (must have been 5 years ago...first pregnancy, still wearing heels). My Preacher hugged me and I gave my heart to Jesus. Afterwards lots of hugs and love. I drove straight to Richard's store to go tell him, I was excited but still wasn't sure how to explain it to my family.
Life hasn't been the same since, and I can't be more grateful for that. Preacher always talks about how once saved you life and actions are never the same. I tried to live life like we used to and I found it just couldn't happen. I can't imagine my life any other way, I love the peace of mind I have being a believer, knowing what my future holds. Knowing that because He saved me, I can go into Ellie's newest battle with the assurance that my God is going to take care of this. That no matter what happens, this is His plan, all I can do is be faithful. That's not to say I don't get upset or I don't cry. I do my fair share of crying, I start to doubt my strength...but luckily I don't have to be strong enough
"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
My sweet mother in law planned out this picture. She found these beautiful pink shirts with a beautiful message. Of course she couldn't leave the boys out and they got their own pink shirts. It's been a long time since all these wonderful people have been in the same room and the same time, and I am honored that it happened at my house in honor of my girl. It had to be a miracle in itself that we are all looking at the camera at the same time, good job Kim! We were also blessed with an amazing amount of delicious food....which I am looking forward to for lunch again!!!
I cannot wait to go to church this morning! I have family all around, and I feel love everywhere!
Wanted to share another song my sweet friend sent me yesterday. Its a great song, but learning the story behind the song, and hearing just what our God can do, gives me a feeling of hope and love!
Patience is a virtue....I often lack. When I want something or want to do something, I tend to just do it, I don't plan it out or try to find the best way...my impulse control stinks, which is kind of funny considering I spend many days trying to help kids with theirs. I know that's why Richard and I go so good together, he thinks out every option there is and selects the best one (just go car shopping with him, you'll see!)
About a year and a half ago I went through a stage where all I wanted to do was quit work and stay home with my kids. My babysitter had just started watching my kids in our house, and I hated leaving every morning, all I could think about all day was coming home to them. I love my babysitter more than words and my family could not function without her and I trust her completely with my children...but I wanted to be here too. Many mornings during my 40 minute car ride to work I would cry and ask God to tell me what to do. Finally one morning God said "Just Wait". Really?!?! The one thing I'm horrible at, and I'm supposed to just wait? Ironic...don't ya think (what grade was Alanis Morrisette?) So I waited, and I did it with a new peace in my heart that this is what I needed to do. Within a few months at school I learned there would be a second preschool class opening up, and tuition spots would be available. I could bring Noah! I can get through anything with the help of that little boy. He is something special for sure and I know God has huge plans for this little boy. He has the kindest heart and biggest smile.
So to start this school year, I got to bring one of my best friends to work with me everyday. We've had the best conversations in our long car rides. Noah has met some great friends and is learning so much. What a good plan God had. I just renewed my license a week before Ellie started getting sick, and filled out my FMLA paperwork for baby #3 the day before Ellie was admitted to the hospital. A few days after being admitted, I was informed that people were donating sick days to be, which means we aren't going to go completely broke in the next 12 weeks. Now when I think back to that day in the car, where God said wait, I'm so thankful I listened. I don't know how things would be different if I hadn't listened, but I feel like our situation is a true testimony to listening to God and waiting for His plan to unfold.
So here I sit waiting again, waiting for the hospital to call us, waiting to find out how our lives will change. But I keep reminding myself...just do today.
While we wait, we are being blessed daily. Food has shown up at my house every day for us. Cards come daily for us and both the kids (thank you all for thinking of Noah too). Offers to help us out, come multiple times a day. Emails, texts, and facebook messages are constant...there are a ton, so please don't be offended if we don't respond right away...I'm trying to set aside time to answer these each day. Two separate donation accounts have been set up for us, and I am overwhelmed with the amount of people who are giving to my family. For someone who has a very hard time asking for help, this is a huge blessing. We cannot thank you all enough. I cannot praise God enough for all of you. And we know that in all things God works for the good of those who love him, whohave been called according to his purpose. Romans 8:28
Today we got to enjoy both our children in the same house. You can tell everyone is trying to adjust back to "normal"...whatever that may be. Noah had a couple of meltdowns last night where he started crying and all he could say is "I don't know why I'm crying", all we could do was squeeze him tight. Being a school counselor I want to reassure him everything he's feeling is normal (there's that word again) but he doesn't know what he's feeling.
Richard was able to take him to church last night for Puggles...again trying to regain that normalcy. Richard then went and spoke to our church family about our new situation. I am in awe of his strength. He has continually repeated our story to numerous family members and close friends. I still have a hard time explaining any of this aloud, but he does it beautifully.
Since being home Ellie has finally started to play with some of those birthday presents, she never got to touch. Its also made me realize we never really cleaned up anything from Ellie's party...besides the food. Her decorations are still up in the basement and some of her presents are still in boxes. I find birthday cards every once in a while that have never been opened. The general "unorganization" of my house is driving me a tad bananas today....don't let that fool you it's not usually that clean or organized but I am 34 weeks prego and I'm pretty sure nesting is getting the best of me! We have to consolidate two kids into one room and get a baby's room ready, not a huge task in reality, but it feels like a mountain at the moment.
Yeah for art time with Mrs. Kelly!
Our new hair do...pre hair washing! "Tails"...which she loves to twirl and a hair bow!
A green snowman!
So her brother....lining everything up!
We got to wash her hair today!!! She definitely did not enjoy the bath like she normally does, but who can blame her, Daddy ended up throwing on a bathing suit and hoping in with her to help give her support. Sitting up on her own without a chair is still a little scary for her. We did the best we could since we aren't allowed to scrub the top of her head yet. But at least it's clean and we have the hair bow in almost the right place now!
I caught myself talking about tomorrow, today....Richard stopped me, "that's tomorrow Carly". Thank you Lord for giving me this man to love. I couldn't imagine embarking on this journey with anyone else.
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 in my righteous right hand. Isaiah 41:10
We sat anxiously waiting for 3:00 to roll around Monday afternoon. That was when we were told the oncologist would be there to talk to us.
10:00
The morning was filled with a visit from the OT, and then our sweet nurse and OT did everything in their power to get Ellie hooked up to a mobile monitor so she could go to "school". Sweet girl got to ride in her special seat with her two poles attached down to the classroom. She enjoyed playing with baby dolls and made a penny for president's day. When we went to pick her up she was playing a board game with two other boys, what fun!
12:00
Once we got back we were told we were getting a roommate ...umm can you say panic?!?! Its one thing if my two year old wants to wake up at 3 and have a dance party, but with someone else in the room, plus then the whole "one parent can spend the night" rule goes into effect with a roommate.
1:00
While enjoying my salad and attempting not to panic at our new situation, and not pay attention to the time, the charge nurse came in to tell us they had found us a private room...pack it up! I made no attempt to help pack, I hopped in bed with Ellie and let the packing master take charge.
2:00
In our new room...one hour to go...pacing, Richard finding great Bible verses...Ellie entertaining us...every knock at the door makes us jump
3:10
Oncologist arrives. At some point I think I left my body, I was physically still there, but it was like I was watching someone else have this conversation. Then he said it, the mass inside Ellie's head is a Pineoblastoma, which is a rare malignant brain tumor. At this point my brain went blank, all I heard was "You were chosen"...obviously not from the oncologist.
I'll let Richard explain...
Pineoblastoma - A rare malignant brain tumor, may also be called a rare brain cancer. Childhood pineoblastomas represent less than 2% of all childhood and adult brain tumors.Of course we asked the question if our other children have any increased risk of being diagnosed with this tumor, we were assured there was no increased risk. Since it is a rare tumor there aren't too many exacts about why people get them, but so far there isn't anything to suggest any genetic pass-down.
Starting in the next few weeks Ellie will begin a treatment called "High Dose Chemotherapy with Autologus Stem Cell Rescue", in the Oncologists words "an aggressive treatment" at the DC Children's Hospital. Typical treatment would also include radiation, but radiation is not an appropriate treatment for children so young. Ellie's treatment will come through a series of different steps. A bone marrow stem cell harvest will be one of the first steps. Some of Ellie's bone marrow will be removed and frozen to use later after chemotherapy. Next Ellie begins her chemo treatment consisting of a few doses of chemotherapy over the next few months. Following her chemo the frozen marrow will be thawed and reintroduced into her body (aka Stem Cell Rescue). The "new" marrow will help Ellie in the healing process because it will not have been exposed to her chemotherapy treatments.
Beyond that, we don't know.
(Isn't he so good at explaining things! He's been so good at researching and reading. I try to read things but I get overwhelmed, so I stop. He's the researcher, I'm the appointment scheduler) I recently also found out that my coworkers donated a tremendous amount of sick leave to me, so that I can be by Ellie's side, and not have to stress that financial burden.
Once everyone left and Ellie returned from her MRI, Richard and I lay there our lives forever changed. What do you talk about, what do you say when your world has completely flipped itself? Do you share all the scary thoughts in your head? We cried, then talked, cried some more, talked some more. Kinda hard to console one another when one of you is laying in the hospital bed and the other on the chair, but I'm so thankful it was in a private room, I couldn't imagine having to do that with a roommate.
The next morning we were greeted bright and early by one of our oncology friends to let us know everything looked good and we would most likely be going home that day. As I was getting dressed in the bathroom (the one in our room...yeah!) I was listening to Richard sing to Ellie the "Hey Baby" song that this stuffed dog sings that drove me crazy the first couple of days, but now is a delight to hear because Ellie loves to sing it too. It's even better to watch Richard dance to! I laughed to myself and then once again the Lord spoke to me and said "WE are going to get through this". I don't think I have ever heard Him speak more loudly and clearly to me
We have promised each other we will do this one day at a time. We cannot worry about what will happen when the baby gets here, we cannot worry about long trips to DC, we can't worry about finances. What we have decided as husband and wife, as mother and father, and as servants to the Lord is to continue our walk strong and keep our focus on the following (again Richard's handy work, he's amazing):
Jeremiah 29:11 "For I know the thoughts that I think towards you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end"
Mathew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" "
Philippians 4:11 "I am not saying this because I am in need, for I have learned to be content whatever the circumstances"
1 Corinthians 10:31 "So whether you eat or drink or whatever you do, do it all for the glory of God"
We know that Ellie was chosen by God a long time ago to go through this.
As her parents we were also chosen, we have been given a privilege, and it is a true blessing. We want God to get everything he deserves out of this. While we would certainly love a miracle and for doctors to be baffled by a tumor that just disappeared, but if that's not God's will, if that not what is going to bring Him the most glory, we're o.k. with that. All we can do is focus on today, the blessings we have been given today, the smiles we have today.
Noah did great during the time of Ellie's surgeries. We did the best we could to explain what happened. But going forward, we are still searching for a way to explain all this to Noah. It's hard to tell what he takes in. When mom and dad are away, when he sees Ellie sick, when he's not allowed to see her, when there's a new baby in the house. Please pray for clarity and understanding for him and that we are able to play whatever part necessary to support him.
We thank you for your continued Prayers, Praise and Pink. We love seeing all the pictures and hearing all the words of encouragement, you help us get through each day.
A month ago I reminded a friend of this song, I can't think of a more appropriate song at this time.
Ellie had her follow up MRI last night, Dr. said everything looks as they would expect. The swelling has gone down more, and the hole they drilled is working good. Because she's a rock star her drain came out this morning without a tear, and we had one more visit with the PT/OT. She is becoming more and more confident in herself. We were discharged this afternoon, as Ellie happily told everyone bye! (it only took two cart fulls to get us to the van) We are thrilled to be home, and it seems to really be helping Ellie a lot, in fact she is getting mad because we are constantly trying to hold her hand when she's walking and she's determined to do it herself. We have found out the results of the biopsy and are communicating them the best way we know how, and in the right time. Your prayers are felt and continue to be needed. We are still blown away at the outpouring of love our family has felt, it is so appreciated. I will share when we are ready. Thank you all for your Prayer, Praise and Pink.
But may all who seek you
rejoice and be glad in you;
may those who long for your saving help always say,
Ellie was given a bear by her beloved Ms. Kelly yesterday and Ms. Kelly's mommy. It sings "Jesus Loves Me"....and that's all we've heard since she got it. At 4:30 this morning I had to threaten her that I was going to take it away if she didn't stop pushing the button. However the song is completely appropriate for life at the moment and the bear couldn't have shown up at a more appropriate time.
Alright now that we are moved and in our new room, lets continue....to be honest I'm not sure I'm liking this move...but then again I'm no good with change. Yesterday was exciting for Ellie, she took another stroll down the hallway with much better balance today.
While you are so proud of her for what she's accomplishing, its hard to think that a few weeks ago she was running around my house, without a problem, closing every door she could find open. Its hard to understand what this little girl has been through, even for me and I'm with her everyday. You forget she's had two brain surgeries in a matter of two days. Her smile has become so bright and her words are back to constant, while she's laying down, but being upright is still very hard for her. Its so hard as a parent to watch, while you are so proud and everyone tells you how well she's doing, your heart still breaks for her. But still "Jesus Loves Me/Her"
*Did I ever mention that we sang "Jingle Bells" the whole way to surgery last week, because Ellie was scared and that's her favorite song...that's why I will dearly miss the PICU ladies*
Ellie is officially unhooked from her drain, and now attached to a monitor to measure the pressure in her brain. She did well enough last night that they allowed us to move out of PICU. Dr. Jane Jr. says she did great, but he still wants two more days of monitoring and another MRI before he will take the drain out of her head. While you wonder how you can handle two more days of hooked to this machine, I can't complain, at least we will know if everything is working the way it should.
Last night around 3 am Ellie came to life. We played, talked, giggled, sang you name it. She has had a very hard time moving her right arm, it had a "board" under it for lack of a better word, that pretty much prevented her from using it. That got removed and now as Ellie says "I found my hand!" Well last night she figured out how to use that hand, holding her own cup (again another one of those things she's been able to do forever). The speech people had pulled the stopper out of the cup so that she didn't have to suck on the cup, which caused her pain, I had to add it back in last night (well 3:30 this morning) because she was choking herself from sucking on the cup...a great thing! She had one other huge milestone that only mommies could appreciate...I won't go into details, but I had to get the nurse to change it!
She also enjoyed playing with her collection of various stuffed friends!
I'm not sure how she was even fitting in the bed anymore! Most of her friends she has added stickers or hair bows to. She has always loved stickers, but her friends from PICU have created a monster! In fact she was handing them out to all her visitors the other night.
This morning right before we moved rooms she was singing and dancing to the singing dog Aunt Kimmie brought. I haven't see this kid in 3 weeks. Since her birthday she has had absolutely no energy or spunk to her.
Tomorrow's the day we are supposed to find out about the biopsy...honestly I try not to think to much about it, when I do I began to fall apart and I let myself start googling things that I shouldn't when I just don't have all the answers yet. I just never imagined we would be facing something like this, what parent would? I'm not mad, just having a hard time figuring out life right now. We have another child we have to take care of....well technically two, and with this new room it will be much easier for Mommy and baby Sarah with an H hyphen Rose Jane Blaine to rest. But do Richard I both continue to stay here day in and out? Do we both sleep here, what if I'm not here and something happens? Its not like we are right down the road. Noah didn't want to leave today and it broke my heart. He was so excited to see his sister's new room, and meet all the new nurses. Kinda feel like I'm living in a dream, this world goes on around me...and I just keep doing what the nurses and dr's tell me to do. I know Jesus Loves Me...now can I continue to show it to all those around me? Maybe I need to continue to push the bear's hand to hear the song.
*A little visitor intervention helped make that non productive train of thought go away - thanks Kim and Jr.*
Richard read me this verse this morning and at the moment, I find it completely appropriate...
Rejoice in the Lord always. I will say it again: Rejoice!Let your gentleness be evident to all. The Lord is near.Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.
Philipians 4:4-7
I don't know what tomorrow holds, but I know I'm extremely thankful for today. Thankful for these smiley happy moments. Thankful my husband is right by my side when I do fall apart and holds me tight. Thankful that for some reason God has chosen us because he knows we have the strength. And thankful because "Jesus Loves Me"
Good Morning!! And its so good because Mommy got a full night of sleep!!! First one since Monday! Richard was so sweet to not bother me when me and baby no name took over the whole bed. Speaking of baby no name, our wonderful friends here in PICU are working on naming her. The fantastic nurse practitioner for our lovely neurosurgeon friend has named her Sarah...with an H. Then our favorite God loving, dancing, Dr McStuffins watching nurse has added in - Rose...has to have the hyphen. And we can't leave out Dr. Jane, he is after all working inside my child's head! So for now her name is "Sarah with an H hyphen Rose Jane Blaine" ...she shouldn't have a problem writing that in school, right?? I mean if Noah can can handle his big old name...
Oh and speaking of sweet Noah, we got to see him!!! Oh how I've missed him. But I take such comfort in knowing I have the most amazing friends and family. My mother has pretty much began living out of a suitcase, switching between taking care of Noah and taking care of my sister....who didn't want Ellie to feel alone, so she took her own trip to the ER. Say a prayer for het too! My sweet friend Lynda, has gone above and beyond watching my boy, bringing him to school (good thing she works there), helping him make his Valentine's, feeding him, and even letting him sleep in her bed when he couldn't sleep. With all that we have going on right now, I'm so thankful I don't have to worry about Noah.
So I finally left the hospital yesterday, I needed a bath, no one told me I stunk...but who would tell a 33 week prego woman that?? Another fabulous piece of this crazy puzzle is my sister lives 5 mins away, so the shower was welcomed!! After my cleansing my mom took me to pick up Noah. Of course he was really excited to see....my mom, I know where I rank. We made a Target pit stop (haven't been there in over a week, I was having withdraws) plus I needed some pink gear, and about 10 other things, that I never got. Noah found his gift for Ellie...an annoyingly huge Hello Kitty, but it was 50% off so its all good! Funny how something I love as much as Target shopping has lost all appeal, I just wanted to get back to the hospital. I even passed up Starbucks to hurry things along!
When I had left yesterday morning Ellie wasn't really talking or moving, just laying there. I was trying not to worry, the kid after all just had her second brain surgery in two days. No sooner then I got to my sister's house did I get a phone call from Richard with Ellie giggling in the back ground and playing. Ellie also got to walk some with her OT and PT friends, then she got a pretty cool chair to sit up in. Speech came too and helped her eat some and taught Richard what to do.
When we finally got to the hospital Noah was bouncing off the walls, luckily the lady downstairs told him he could stay with her if he wasn't good! He straightened up a little! I had tried to prep him with the idea that Ellie had lots of tubes and wires, but wasn't quite sure how he'd react. He hugged his sister and she didn't yell! Then the fabulous nurse Ms Jen (hyphen Rose) helped us show Noah a picture of Ellie's tumor and explained how super hero Dr. Jane and superhero God squished it to make it small. He asked a few questions, then went in the hall to dance with Ms Jen.
After her meds and a quick rest, Noah got to sit in bed with her and play. He showed her all the get well cards his class made and read her a book, she listened intently. It was so nice to have my family all back in the same room, even if its a hospital room. Makes you think back to those moments where they are fighting and hitting one another and driving you crazy, what I would give for another day like that. Another day of yelling "walk in the house" or "Ellie don't hit your brother". Another day of dancing in the kitchen. I know its not my plan and I truely believe it will happen again, I'm just getting anxious.
Ellie had a lot of fluid/pressure in her head. She is having trouble with her right side, although last night I happily watched her get het "boogers" with het right arm. She has a hard time sitting up by herself, but we're getting there. The best moment everyday is hearing "Mommy, it be okay". And I truely believe she knows that!
Thank you all again for your continued love and prayers. Once I get my hands on a real computer I can't wait to share all the pink pictures we've gotten, including an entire wrestling team with pink bows.
We have another busy day of therapists and rumor of getting off the PICU today (a little nervous about that, I love these people in here, plus Richard still has to get Ms. Jen back...they have a little battle going on).
I pray that all of you know just how much you are touching our lives. Richard and I praise God for you every day and you are all in our prayers!
I'm happily watching cartoons even.though no one else is up...but that is a beautiful thing! Ellie had a great night sleep after she finally got settled in from her surgery. She is still pretty groggy but resting. She made it through beautifuly, everything went as planned and the Dr was able to remove some of the tumor. Now we wait...getting pretty good at that. Biopsy results could take up to 5 days.
Richard and I were again humbled and thankful yesterday as the pictures rolled in of our hairbowed friends! The balloons and gifts poured in as well. At one point I just stopped and cried at the amount of love that was shown to us and our princess. By the end of the day, our nurses all had pink hairbows too! The first doctor who came in had on all pink scrubs, even Richard has his hairbow in for his girl.
God is all over this place. We finally got to meet the man who would take care of my girl's head. The man who flew home early from his Florida vacation to take care of my girl. The man who would be operating within millimeters of some nerve that if got damaged, it would be no good. The man who stayed and prayed with us and reminded us, he wasn't the one who would be fixing my daughter. We love Dr. Jane!
We were also blessed with an amazing nurse who immediately recognized our faith in God. She prayed with us, made sure that we got to see Ellie inbetween her MRI and surgery yesterday, so we could pray over her again.
There have been 100 other things that have happened and Richard and I can only praise Him for it. We are a true testimony of not understanding the path...but now that we are on this side of it, it all makes sense.
Hoping to get Noah here today. Trying to figure out the right things to say to him. Definitely not a conversation I ever imagined happening!
If you have a picture of your pink bows or clothes and you didn't post to Facebook I'd love to have it, I'd like to make Ellie a picture album of all her pink friends. You can email it to me at carlyblaine@hotmail.com
Again, thank you all for your love and support, most of all your prayers....they are working
UPDATE....Dr Jane just came back, he said it looks like he was able to.remove about 85% of her mass....not the official number, but we'll take it! Thank you Lord!
A friend shared this with me this morning. Had to pass along.
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Ephesians 3:17-19 NIV
What do you do when you can't fix your baby? When just a kiss and a hug can't make it all better. We started this journey on Ellie's second birthday with what we thought was a stomach bug, from there it has been a whirl wind of Dr appointments, ER visits, and diagnosis. Almost every diagnosis along the way made sense and they treated what they saw.
So here we sit tonight...or technically this morning...(I'm losing track) in the PICU at UVA waiting on her second MRI. We told Monday evening that my sweet girl has a mass in her brain that is blocking the fluid in her brain from draining. She was taken to surgery very quickly to have a drain placed to relieve the pressure and her first MRI done. As a girl and a mom, my mind went straight to her hair. The wonderful people here, tried their best to not shave her hair and even saved me some of her hair, her first haircut...what a way right! We got her back a few hours later, with her new hat....definitely not mommy crochet grade...I'm still trying to convince them to let me add a flower! They gave her monkey a hat too (which also needs a flower).
We got to see the MRI pics of this perfect little head with, with that ball right in the middle. A very surreal moment...so that little thing is what has taken my baby from crazy two year old to a cranky lump. Something so little is changing our entire lives.
More wonderful people have swept in to love my child, bathe her, steal applesauce for her, read her books, bring her presents and take care of us.
I'm more overwhelmed at the amount of love we have received from our friends and family. There are so many people praying for my daughter. I know my God is awesome, but he continues to amaze me. He has given me such peace during this insane time. I am so grateful for that. He's given me my girl back. Over the past
24 hours she has laughed, played, cried but best of all smiled. Oh how I have missed that smile. She is having a horrible time sleeping, but she continues to be as sweet as she can be....considering!
So today, Valentine's Day, a day filled with love, my love will have surgery again. They will biopsy the mass, make a hole to help her fluid drain (there is some big fancy word for the procedure...but I'm too tired to find where I wrote it down...or lazy). The doctor will also attempt to reduce the size of her mass. Once they are done, we wait for results. I can't say I'm excited about living in the hospital for a week, but I am praising God for this hospital and all those on it! (I'd really be excited for a room with a bathroom...this waddling down the hall is getting old!)
I know lots of friends and family have only gotten bits and pieces, so I hope this helps...I know its helping me.
Lots have asked what they can do for us, please just pray for my family. My I haven't seen my son since Monday and I miss him so much. I have an amazing support system helping me with him bit I miss him. My husband is heartbroken because he can't fix his princess. And me... My prayer has always been that in time of a crisis I would still be faithful and still praise my God. I'm doing good, just gotta keep it up.
One last request. If you know Ellie or me, you know she always has a hairbow in for every holiday...well today she can't wear hers. Wear one for Ellie today if you can...she loves pink and there's no better day for pink then today! Hug your babies and thank God for them.
I will not proof read this...so forgive me...plus I gotta go waddle down the hall!
We met while working together at Old Navy in 2002. After 3 tries Carly finally agreed to a date and the rest is history! We are the very proud parents of 5 amazing children. Richard works full time at the regional level for Old Navy. Carly works full time as an elementary school counselor and loves to crochet...when she finds the time. We both welcomed Jesus into our hearts in 2008 and life has never been the same since!
Noah
Noah is our 13 year old son. He has a love of all things Legos and is starting a fascination with Star Wars. He currently wants to be a kindergarten teacher when he grows up (but only after he is the first human on Mars)! Noah has a huge heart and always wants to help in our family's efforts to raise money for different cancer charities.
Ellie
Ellie is the first of 3 girls, and has paved the way for all the Blaine Princesses. Ellie was diagnosed at the age of 2 with Pineoblastoma, a very rare brain cancer. Ellie adored all the princesses and the color pink! She had a huge smile and adorable dimples that could make the world a better place any time of day. Ellie's battle with cancer ended December 22, 2013, just before she turned 3. Ellie lives on in the hearts of the many lives she touched in her 1061 days. Because of her, we are always Princess Strong.
Sarah-Grace
Sarah-Grace (aka SG) is our 8 year old daughter who was born almost 2 months after Ellie's cancer diagnosis. She was our calm among the chaos that our world had become. In fact for the first 9 months of her life she was the most easy going, calm baby. And after Ellie passed away, this little lady took over full force! She is now sassy, energetic, and in no way the girly girl her older sister was! This girl is full of emotion and loves and plays hard! She will one day move mountains I have no doubt! She keeps us moving and laughing and continually teaches us to take a deep breath!
Lulah
Lulah is our 7 year old daughter. She is named after her big sister Ellie, who we sometimes called "Ellie Lu". She makes the funniest faces and is brutally honest, but has a heart for Jesus! She's a goof and always makes us laugh! She is a constant reminder of God's grace.
Stori Anne
Stori Anne aka Baby Cinco is the last of the Blaine girls. She is 3 and INDEPENDENT! She has so many of Ellie's mannerisms, you just can't help but smile and thank God for these drops of honey! Her name reminds us that God has given us a special story to share with everyone around us of God's grace and provision.
