Pink Balloons, Prayers and a Song...

Today was Rare Disease Awareness Day. We did a balloon lift after school/work and wrote prayers and names on our balloons. All the balloons were pink because the woman at Kroger couldn't speak English, but she understood "pink", so you take what you can get, lol... I think we still got the point across and it was a meaningful event.

I was acting silly as I drove home from work with a half dozen "peeenk" balloons.  Bless her heart, I got there and she had every color, I just really don't think she understood... The cause made it worthwhile, no matter what color they ended up being.

We had fun writing on the balloons. Sophie wrote a sweet prayer, "I hope you can hele me, please cherish me in your presents I love you Lourd, Amen"

We wrote names of children that we know are in heaven, or names of children that we know that are suffering or have suffered with Histio in some form. It was sad, but good for Sophie to know that other kids have it too and that she's not alone, even though she really feels alone in this sometimes. 

My mom was good enough to take pictures. Aiden was sooo sick in this picture, but he wanted to be with us, so we got a picture, just the three of us... We all prayed and then launched the balloons up to the heavens. I know this exercise meant a lot to Sophie, and it meant a lot to me that we were included in some small way with the folks around the world just like us, and many worse-off, that are going through the same roller coaster day by day.

The next few photos are just amazing to me. My friend Melissa, showed up with camera in tow, at Sophie's party on Saturday and took the following pictures. They are in random order, and I am still just in awe of them, to be honest... www.snappedwithlove.com.... just amazing!!!

This last picture is of Sophie, taken by me, in my parents' house, just before the balloons launched this afternoon. Please continue to keep us in your prayers. She has fever between 99.5-101 every day and has bad headaches and fatigue. She is so tired at the end of the day, that she mostly wants to lay around and do nothing. Though I can relate, I wonder how this is all going to play out... I guess only time will tell...

So, today was a good day, and I am cherishing the fact that Sophie was well enough to participate and pray for the children that are fighting Histio. She is amazing, in fact, she wants to take the piggy bank she's had for the last 9 years and donate it to Jump Rope for Heart to help the kids that are fighting heart cancer. She also said that she wants her hair to grow out to give it to Locks of Love... Where in the world does she get such a generous and giving heart? I am a decent person, but wow... just WOW.... She's blowing my mind.

Nine years ago tomorrow, at 4:13pm, she graced us with her presence. I have never been the same. Sophie made me a mom and I can't thank her enough for how profoundly she has changed my life, and the underlying core of who I am. I am kinder, more reflective and just an all around nicer person than I was before. I knew Christ, but she made Him an urgent priority. I knew I loved my parents, but she made me want to TELL them how thankful I am for all the sacrifices that they made so that my brother and I could live the lives we have led. She made Mother's Day my birth day and made my heart open to unconditional love. Thank you Sophie, "I'll love you forever, I'll like you for always, as long as you're living, my baby you'll be"(Love You Forever, Munsch)

And, for Sophie, I have to add these lyrics because I used to sing this song as her lullaby:

To Make You Feel My Love lyricsSongwriters: Dylan, Bob;
When the rain's blowing in your face
And the whole world is on your case
I would offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
So no doubt in my mind where you belong

I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There ain't nothing that I wouldn't do
To make you feel my love

The storms are raging on a rolling sea
And down the highway of regret
The winds of change are blowing wild and free
But you ain't seen nothin' like me yet

There ain't nothin' that I wouldn't do
Go to the ends of the earth for you
Make you happy, make your dreams come true
To make you feel my love

Goodnight friends,

J

A Birthday Party, a Tennis Match and a Heartfelt Prayer...

This was a very good weekend. Sophie felt good, all things considered, for her party on Saturday. She was running a low grade temp on Saturday morning, but since the doctors don't seem too worried about it, I just gave her Motrin and she pushed through. She complained about a headache, but was very excited about the party. On Friday night, my friend Nicole brought over the most adorable cupcakes. What an awesome surprise for Sophie. They were spectacular tasting and really cute... see....

They were strawberry with cream cheese icing... Nom Nom Nom! So, the cousins arrived and the goodie bags were made, and people started to call for more specific directions. We had such a blast and my friend Melissa with Snapped with Love Photography (http://www.snappedwithlove.com/) came and took some pictures of the event for us. She is a full time on-location photographer now and has amazing talent... just check out her site and her blog is good too!

Well, back to the party... Aside from the temp, we pushed onward and she spent about an hour and a half outside playing and eating cake and running around. It delighted me to no end to see her actually playing. Her adrenaline was really pumping and the Motrin had kicked in, so I'll take what I can get!

There were two little girls that slept over, (Sophie's first sleepover) and another that stayed 'til 9pm. Though Sophie had a little breakdown at about 8pm and wanted to call it off, she rested and collected herself and I gave her a little encouragement and reminded her to take it easy and she was fine. They stayed up until they turned on "Oliver and Company", possibly the most BORING Disney movie of all time. They snuggled up in their sleeping bags and and once the movie was over, there were no arguments, they all fell asleep.

I was so surprised that everyone slept so well all nestled in on the living room floor. But, after the day they had all had running around like crazy wild children, I completely understood. Aiden went over to my mom's to spend the night and the girls relished in being able to giggle through the movie. And, I enjoyed being able to fall asleep on the couch as I attempted to stay awake through the movie.

By eleven, after the final pass through the house, I was lying awake thinking about how blessed the day was. How generous people were to come and bring gifts for Sophie and how amazing the weather was. How, even though she had a temp and a headache, Sophie pushed through the day and had a great time. We all had a blast. Aiden was beside himself and completely over stimulated but had an amazing time showing off and running around the block a few times. He doesn't get out much...

The other news this weekend is that Sophie's doctor from Texas Children's sent me an email response and told me that for the headaches/malaise and the fevers that Sophie's been having, we should see the pediatrician. Well we already did and she told us to call THEM... I'm so frustrated and all I want is for her to have a week, a full week of good days... I emailed him back and said that we did see the pediatrician and that the pediatrician had told us to go see THEM again. Obviously he's not all that concerned with the test results or he would insist that she come back in sooner than what is already scheduled, but I'm worried about an every day headache and an every day fever. It just isn't right, and I feel like I'm playing a tennis match and that my daughter's the ball. It's just not right. I plan to get to the bottom of this tomorrow. It's just getting old. God's got this covered, but I am her advocate and I will push on to get to the bottom of this.

And, in other news, we're back on the roller coaster with Aiden. He's got a temp today and runny nose/congestion. I hate it when he gets sick because his immune system gets weak and then there is the threat of seizures. He hasn't had a seizure in months, but he's been so healthy, we'll see. I just want him to get stronger and stronger like he has every day. I pray for that every day of my life.

Tonight I am reminded just how blessed we are, and how the focus of everything in my life has changed over the last three years. My focus has become completely my Lord and my family. No doubt. I like my job and the people I work with are amazing, but the focus of every breath I take now is my God and my family. I have completely and totally surrendured my life to Him and though I know that the last three years have been pretty tough, there have been some amazing parts too... and will continue to be, with God's grace, His strength and the healing power, that can only come from Him. As pastor Jim preached this morning, he talked of how Mary fell at Jesus' feet several times in scripture. Tonight I am falling at his feet worshipping with a thankful heart and an enduring faithfulness that will see us through another day.

And, as I pray tonight, I am really looking forward to tomorrow. I am deep in contemplative mode about all the warriors that have and are being affected by rare diseases tonight. My friend Tammy put this list on her Facebook page and I wanted to share it with you tonight. I realize it's just the tip of the iceberg, but it really puts it in perspective. Please pray for these people and their families tonight. If they have brackets next to their ^^name^^, then they are angels now. If they don't, they are survivors/warriors braving the roller coaster every day. The color next to their names is the balloon color that will be lifted for them tomorrow in honor of rare disease day. I am praying desperately that this event brings some much needed funding and attention to the cause. We can't lose more children or adults to these dreaded and horrific diseases. Thank you Tammy!

HISTIO ANGELS (Children)
...
^^LIAM^^ white like the angel he is. HLH

^^CAMERON^^ Blue HLH Sweet baby boy

^^ELLE^^ Pink LCH

^^AAMARI^^ Green and Pink LCH

^^ Jake^^ blue HLH

^^SYDNEY^^ pink HLH

^^Samuel^^ orange LCH

^^DeCota^^ Yellow LCH

^^Tanner^^ blue JXG

^^Justin^^ blue HLH

^^ Devan^^ red

^^ LOGAN ^^ Blue

^^ZAC^^ green

^^ BEN^^ green JXG

^^ ABIGAL^^ Pink

^^Brady^^ Yellow for Sponge Bob! ^^

^^Karleigh^^ red HLH

^^Justice John^^ and ^^Jon Carlos^^ HLH angels and brothers

^^Andrew and Matthew Aiken^^ HLH angels and brothers

^^Cade^^ blue FHL

^^ANTHONY^^ red HLH

^^MCKENZIE^^ pink LCH

^^HALEY^^ Pink LCH JXG

^^ARI^^ Pink LCH

^^Little Joe^^ Lime green LCH

^^Stuart^^ orange LCH and HLH

^^Madilyn^^ pink LCH

Other Rare Disease Angels (Children)

^^Garrett^^ orange Acute Lymphoblastic Leukemia with Lymphoma

^^Trinity^^ Blue Acute Lumphonic Leukemia and died from blood infection

^^Haleybug^^ pink Acute Lymphoblastic Leukemia

^^SUSANA^^ our newest angel 2-11-11 Pink Neuroblastama

HISTIO WARRIORS STILL FIGHTING AND SURVIVORS

I have listed the children's names, the the color of balloon they wanted, then what thier disease is.

Deakon Orange HLH Survivor and free of disease for 5 yrs

Sweet Sophie Pink HLH and BMT

Hailey Pink HLH Miracle Girl

Caleb yellow FHLH post transplant

Freya Rose pink HLH Miracle Girl

Blair blue HLH Remission for 2 yrs

Stephanie pink HLH Survivor from UK teenager

Racheal pink EBV and HLH in remission for 7 mos.

Caleb red HLH with BMT and just relapased HLH again

Dayne green HLH Remission

Ethan HLH Survivor

Kristen HLH Survivor

Samantha HLH with complicated BMT

Tuesday HLH and BMT

Liamh FHLH and BMT

Calum FLHL and BMT

Benjamin Yellow LCH

Bri'anna Purple LCH Remission

Brooke pink LCH

Justice pink LCH

Abby pink LCH

Kadence Purple LCH

Kylee Orange LCH and DI Remission

Nataly Pink LCH

Zoe Purple LCH

Erin Green LCH Remission

Zachary Baseball Field Green LCH Remission

Kenny Light Blue LCH Remission

Ava Green LCH

Joey Blue LCH and Bone Marrow Transplant

Olivia Purple LCH Remission

Ian blue LCH Remission

Jace Blue LCH

Tyler Blue LCH

Zoe Purple LCH

Bubby David Red LCH

Elizabeth Pink LCH

Lucas Blue LCH

Devi light blue LCH

Ryan White LCH Remission

Alex Green LCH

Lauren Blue and Green LCH

Corbin BLUE LCH

Ethan Red LCH

Alex blue and green LCH

Evan Green LCH

Ella purple LCH

Justice Pink LCH

Elias LCH

Brandon Red and Blue

Elliott Green LCH

Brady Yellow LCH

Jacob LCH

Elmer blue LCH and Mastocytosis

Kyle green LCH

Preston LCH Purple

Sawyer orange LCH with DI

Taylor Blue LCH with CNS

Lily pink LCH

Layla pink LCH

Nolan green LCH

Ryan blue LCH Remission

Griffin red and blue LCH Remission

Brittany yellow LCH

Callie lime green

Raelee purple purple purple :) LCH

Carina yellow LCH

Carson blue LCH

Kenneth blue LCH

Isaac blue LCH

Chase green LCH remission

Bryson blue LCH

Stuart green Possible ND CNS

Joseph red LCH

Quentin LCH

Davyn Green JXG Miracle Champ

Santiago Red and JXG Champ

Sean blue JXG Champ

Jayden red JXG Champ

Declan Blue Ocular JXG Champ

Abby Pink JXG Champ

Morgan purple JXG Champ

Braeden blue JXG Champ

Symphonie pink or red JXG Champ

Justin Blue JXG Champ

Jamie blue JXG Champ

Emma purple JXG Champ

Beth pink JXG Champ

Joseph green Rare Blood Disorder

Nevaeh

ADULT HISTIO WARRIORS

Roy LCH

Chris green Adult LCH

Nancy blue Adult LCH

Heidi K Adult PLCH

Elizabeth blue LCH with CNS and Di

Elizabeth Adult LCh

Jonny A LCH

Stephen K LCH
***********************************************************
OTHER RARE DISEASE WARRIORS

Sparky purple Ehler Danlos, LQTS, and Dysautonomia Adult

Chad Red Cystinsois Adult

Noah Red HME ( Half of Brain removed to stop seizures) He is our Miracle Boy Child

Trent yellow Seizure Disorder/Cancer Survivor Child

Katelyn pink Wilm's Tumor in remission Child

Brittany blue ALL-Leukemia- Child

Lara red RSD
***********************************************************
RARE DISEASES ANGELS

^^Debbie^^ Pink Cystinosis


Dear God,
Please say goodnight to the precious angels for us, children and adults, that were taken from us too soon. And, to all the friends we don't know yet, that are fighting these disorders, please help them find peace in knowing that people they don't even know are crying out for your supernatural healing and peace for them tonight.
Amen.

Goodnight friends, J

Our new normal...

Yesterday was a really good day all things considered. I got the MRI and CT results and though there were a few things that I have yet to hear from the doctor on, I am thinking, since we're not in an ER or OR bed tonight, we have a LOT to be thankful for. We have the biopsy report and I think overall I just probably need to chill...

I think the hardest part is waiting, but today, other than a headache and a temp that she's had for... oh... 3 weeks on and off, I should be thankful the symptoms are not worse and Sophie and Aiden are asleep in their beds resting soundly right now. I have SO much to be thankful for in my life. My finances may suck right now, and I have two kids with life-long health issues, but today was a good day. I have to count my blessings one by one. Love my kids, family, my boyfriend and my friends.

Tonight I am especially thankful for my boyfriend, Adam. He has stood by me through all of this and has showered me with love and affection and some important words of encouragement a long the way. Not to mention, he knows how to have fun. I fee like the luckiest girl in the world when we are able to spend time together.

At the Rockets Game just before the game began.

Our trip to Austin last year.



Whe n we went to Pat Green.

Goodnight Friends, J

BIPOSY NEWS!!!

What a roller coaster AGAIN!!!

 

Well, we got the results of the skin biopsy and it's Keratosis Pilaris, a skin conditionthat is treated with creams. Yay! Great new and we're so relieved that the skin rash didn't contain LCH. The MRI and the CT reports confused me though, and I have calls into the Histiocytosis doctors as well as the head and neck surgeon again because there was still a "nodule" present on her skull and into her scalp as well as few other unclear areas on both tests. This is the most confusing whirlwind.

 

And, in the mean time, Sophie says her rash is "itchy" and that she has a headache and doesn't feel well today when I spoke with her this morning on the way back from her dads house. I really wish someone would explain these reports. This not knowing is the hardest part...

 

I will update later tonight....

 

Talk to you soon,

J

More about Sophie... and a FAVOR to ask!

More about Sophie...
Well, I have told many of you about how Aiden got here and what medical issues he had at birth and you have all read the blog entry about when and where he was born, etc... What I want to talk about tonight is Sophie. Tonight is a good opportunity for me to share with you a little bit about her, and maybe it will help pass the time as we wait for the results... Waiting takes forEVER when you know it could be bad news...

So, here we go... Sophie Meghan Brewer was born on March 1st, 2002 at 4:13pm. She was born four weeks early and though she did have to have oxygen at birth, she was the most angelic thing I had ever seen. The first child you have somehow brings you a little closer to God, I think...

Sophie weighed 5lbs 9.9ounces and was 19in. long. Healthy for only 36 weeks!

I was so relieved to finally hold her. I had seen her once before this in the NICU, where she had to have oxygen for six hours, but this was the first time I got to hold my precious Sophie.

Sophie went home with us after two days in the hospital. My ex husband and I lived in Spring Branch at the time. We had a few happy times in there, and Sophie thrived. Not long after her birth, her stepbrother, William came to live with us. He was so good with Sophie, and was such a little charmer. After he moved in with us, we moved to Sugar Land just after Sophie's birthday.

William (age 12) with little sister, Sophie. He's 21 in a few months. Hard to fathom...

She has the brightest eyes of any child I had ever seen, and in my eyes, she was just perfect! Her childhood was filled with much joy until her father and I seperated in 2004, and divorced in 2005, but she was sheilded from most of the bad parts, and what she did witness, she was too young to remember, thank God. Divorce is never good, and it was one of the darkest times of my life. I know that my ex and I both tried to make sure she was well cared for and loved in spite of the fact that he and I weren't going to stay married. It was a sad time, but we made it through... and in hind sight, I think it was all for the best. Sophie and I now make a great team!

Sophie at about 10 months old... Valentine's Day 2003.

Looking SO grown up at only ONE!

This picture was taken when Sophie was about 19 months old, on our back yard swing.

This was at Sophie's second birthday party. I still can't get over how blonde her hair was!

 As we prepare to celebrate Aiden's second birthday in a few months, I can't get over how similar they look. I mean, they are related after all. I also don't think I will ever understand why this illness had to strike such an innocent little angel such as Sophie. She is precious and kind hearted. I know everyone says that about their kids, but people make it a point to tell me what a well behaved little girl she is and how nice she is, even to the kids who are mean to her. In Kindergarten, her teacher was so proud of how she always nurtured and was kind toward the special needs kids in her class. They would come in for socialization intermittently throughout the day, and she said that Sophie would go over to them and talk to them, like nothing was wrong with them at all. She said that Sophie made sure to never stare at them awkwardly, but rather encourage the other kids to be nice to the special needs kiddos as well. I was truly humbled when she told me this... my heart overflowed.

South Padre Island when she was three...

I never thought that one day, we could be looking forward at our lives wondering whether she might be one of those kids. And, realizing that she could be, appreciating the kids and their parents all the more. We have been so blessed up til now, and I know we will continue to be. Her life has been so rich with blessings, I know that God will use this disease to make her stronger, and as one of my colleagues said, this could change the whole direction her life could take, possibly for the better! I think she may be right. Sophie and I have often talked about her faith and what she thinks about God. I don't think she realized that she actually does pray to him until the other day when she looked down at the floor and I asked her what she was doing. She said she was just asking God, "Why?", and I said, "did he answer?" and then almost choked on my words because I thought I might have said the wrong thing. Her answer was what surprised me. She said, "No, but I feel a little better just cuz I asked."

Isn't that what we should all do? Just ask Him. You never know what He might say. He may not answer right away, but sometimes crying out to Him is just the right medicine.

So... Now for the favor...
Many of you have asked me what you can do to help Sophie. Rare disease day is Monday February 28, 2011. The Today show will be featuring many kids and adults who have and are sufferring (some of whom are with God) from LCH, HCH and other Histocytic disorders... They are going to have a huge world-wide balloon release that day along with this event. I think that what would help Sophie, is for you to go get a balloon and write her name on it and take a photo of yourself and send it to her (sophie.brew@ yahoo. COM). Then release the balloon and send up a healing prayer in her name that day. You never know, you might "feel better just cuz you asked." And, if you can't do the whole balloon thing, I think it would be amazing if you just prayed for her, and then drop her a note to let her know. Her birthday is March 1st. I know it would really cheer her up. Our whole family only wants one thing for her birthday, and you guessed it, it's for total healing!

Thank you so much for reading...
Goodnight friends, J

Quickie Update...

As you may have already heard, Sophie has had to have yet another biopsy on this past Monday (2/21) of the skin on her back... They are testing to see whether the LCH has spread to her skin, meaning at that point it has gone multi-system. As far as symptoms, she feels very sluggish... Has a low grade temp and the rash is migraotry, one day it's bad on her arms, then her face, then her back, then her legs. She's very puffy and quite uncomfortable. If this biopsy comes back positive, she will indeed need chemo. I just want her to be comfortable, and she's just not. Thank you for your continued prayers. We should know something Friday or Monday.


Talk to you soon, J

This was taken this fall, just after "ouchie" first appeared. She looks so happy!

Fear...

So, as I think of what the future might hold, I am frightened. I have so thoroughly enjoyed being Sophie and Aiden's mommy that I can't imagine life without either one of them. As I looked at Sophie tonight, her cheeks flush, low grade temp, and rash all over again tonight and just an overall tired feeling, I just can't help but think something is still going on in her body. I know it really does no good to sit here and blog about being scared of tomorrow, because God WILL help us through whatever the future holds, but I am still feeling what I am feeling.

I am so glad I have work to escape to... I truly am thankful for the smiles in the hallway, the projects that need to be completed and the deadlines that are up against us this week. It keeps my mind off of things at home when I know I have other things to worry about than doctors and test results... even though I wish Sophie and I could just cucoon ourselves up under my comforter and sleep for a few days. Somehow I think that might just make it all better.

I am also glad I keep pushing Sophie to go to school every day and do the things that she likes to do. She's such a happy, smart and creative little girl. She said that they got their crawfish in science class today. I was kindof grossed out and then I asked her when we get to boil them up, she looked at me like I was crazy. Well, maybe I am... I AM a mom! lol...

Goodnight Friends, J

beautiful

Beautiful, by Mercy Me

Days will come when you don't have the strength
And all you hear is you're not worth anything
Wondering if you ever could be loved
And if they truly saw your heart
They'd see too much

You're beautiful, You're beautiful
You are made for so much more than all of this
You're beautiful, You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Praying that you have the heart to fight
Cuz you are more than what is hurting you tonight
For all the lies you've held inside so long
But they are nothing in the shadow of the cross

You're beautiful, You're beautiful
You are made for so much more than all of this
You're beautiful, You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Before you ever took a breath
Long before the world began
Of all the wonders He possessed
There was one more precious
Of all the earth and skies above
You're the one He madly loves
Enough to die!

You're beautiful, You're beautiful
In His eyes

You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured, you are sacred, you are His
You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured
You are sacred
You are His!

Goodnight Friends, J

Even the bad days are Good!

First, let me say that I could not have mad it through the last few months without my friends and family. It's been a long journey, but I thank God every night for friends like you and for His faith in me. Faith, that I will never live up to or be able to comprehend. I know He believes in my strength to get through this even more than I could possibly believe in Him.... It blows my mind if you want to know the truth. Thanks again for your friendship and encouragement!

Today, Sophie had a fever, headache and her rash is spreading and Aiden was teething. It was a super fun day! wooo hooo! There's some sarcasm in there somewhere, but seriously, though it was a long day, I wouldn't trade even these days where both kids are cranky and the house work doesn't get done until the hours after the kids go to sleep for anything in the entire world! When my son was born, he and I almost didn't survive and the fact that he and I are both here and we get to share in what the future holds for all of us is a gift. An amazing gift, that still brings tears to my eyes!

People often ask me how I have the faith to go on even when my little family has such high mountains to climb and this is what I say... God saw me through the darkest time of my life. And, if He can see me through that He will see us through this no matter what the outcome. Do I have the strongest faith? no. I get weak and doubt Him just like most people do. I don't know why I'm rambling on, maybe it's because I want to make sure I remember that He's there, because I'm scared. But I think this fear is a natural part of this whole process.

So, today, I read a few stories about people I have recently met on the histiocytosis facebook page. These people are amazing survivors! I read a friend of mine's blog today whose daughter has gone through chemo in the last three years for LCH and she said that her daughter's symptoms were strikingly similar to Sophie's. In fact, they even look alike. I have started praying for this little girl, in addition to my own. I pray that God will see them both through whatever the future holds, that they will both be surrounded with His love and the love of their families and friends, and that one day they will meet and be able to talk about their experience.

Another patient shared about her experience talking about the fear and how she wish this disease hadn't taken her time away from her husband and three children. I was deeply touched by her story because she dug deep to tell about the fear and trepidation she had experienced as she entered into treatment and how she still lives with multiple tumors in her body still to this day. I saw some insight into what my daughter might experience if she ever goes through chemo in the future.

The parents who have lost children are so amazing as well. They talk about the hope and lessons that their children gave them. They talk about the support of their friends and family and doctors along the way. Most of them have lost very young children, though many of them have angels who have gone to heaven at a later age, all much... too soon! It's also so incredible how when a child passes away, they put little symbols by their name like. "^^name^^" It's like little angels wings that have sprung out from either side of their name. It just brings tears to my eyes because when you see those little symbols, you just know...

As we go down this road of Langerhans Cell Histiocytosis (LCH), I still keep thinking of the kids at the cancer center with their little masks and hats and pray... Oh God, I pray tonight that my Sophie doesn't have to go through it too. If she does, we will obviously get through it, with God's help... but fear is creeping in... It just is... Well, the doctor and my friends  have warned me that I should be prepared for a roller coaster with LCH... that this disease can go into a "spontaneous remission" but that nothing is 100% and that they definitely want to have the rash biopsied on tomorrow. I pray that it goes well.

As far as the bright side, I am absolutely overwhelmed by the support of our friends and family. Sophie wanted to put all the cards in her mini blinds of her window of her room. It made me cry tears of joy when we had them all up.

Handmade cards from her classmates and cards sent from family members and churches across the state. We are so very blessed to have such amazing friends and family.

Aiden decided to try on Sophie's Easter "Hat" as he called it. I just thought this was too precious not to share!

Gee Mom, you really want to take a picture of me when I have a fever?

Sophie looked and felt pretty miserable today. She even took a nap this afternoon after lunch, which she hasn't done since she was about two! She complained of a headache and itchiness all day...

I just know that this is going to be okay. Some days are a little darker than others. Tomorrow IS another day!!! And, God's love is new every morning.

Lamentations 3:22
Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him."

Goodnight friends, J

Breaking news...

Tonight I got a call from one of the two doctors working on Sophie's case. He was in Hawaii at a conference, and though I was starting to wonder whether the doctors really understood just how urgent this all was to US, he called... from Hawaii... just to talk about her case. He, and the other doctor working on her case, both believe that the biopsy of her skin rash on Monday could be important. He said that if the rash is positive, it will mean chemo because that will prove, beyond a shadow of a doubt, that the disease has gone multi systemic. He also warned us not to let our guard down because though the disease has a high remission rate, it isn't something that usually goes away without some form of treatment. Sophie had the excision of the place on her skull but it is still there, though there weren't any other areas of concern on the radiology reports, tonight the doctor did tell me that he and his associate had not met to discuss her case in detail because he has been out of the continental US and the other physician has been over at the hospital now seeing the much sicker patients. Though I am frustrated, I do understand. He also told me that we should try to find someone to do the biopsy Monday because if it is multi systemic, then chemo will need to begin soon. I thanked him for his call and told him that I would talk to him soon. He said to email or call again if there were further developments on Monday, and that if something major developed over the weekend, of course, go to the ER.

Well, as I reflect on this conversation, though this was not something I wanted to hear, but tonight, Sophie's rash is on both legs and all over her back. There are also some spots on her back that look like bruising, which is typical of the disorder when I was looking through the literature on LCH tonight. I will put the cream that the dermatologist gave us on the spots that are especially irritating and pray to God for the best tonight. I am hopeful that this is nothing more than her body working through this, and that the rash is something totally unrelated. And, that her headache and fatigue are just the anxiety that she has about the whole thing.

I am trying to lift her spirits as well as I know how. Tonight I made her a healthy dinner of a little lean grilled steak, some steamed veggies, a salad and a small baked potato. For dessert she had a homemade fruit and yogurt parfait. I think she had seven servings of fruits and veggies tonight and 1 of protein. I'm making a real effort to feed her the right foods so she can have the strength and vitamins in her system to get through whatever life has to throw at her. I also have been making sure we get some exercise, though she doesn't always feel like it. It sure paid off for me too when my mom bought her some new clothes today as an early birthday present.

Pretty girl in pink flowers.

She looks so grown up here!

 Well tonight as we ate our supper, we spread a blanket out (Aiden was tucked in already) and we had a picnic on the living room floor. We turned on one of our favorite movies, The Princess Bride. We laughed and laughed as the old preacher said, "Mawwege... Tha dweem wiffin a dweem..." Hilarious. Sophie said that in order to watch this movie you have to be old enough to understand that some of the words are bad words so you won't repeat them. She's a hoot... and a good girl.

I hate that I've become oddly obsessed with every bump and bruise and scrape on my daughter's skin. I am afraid of what the future holds. And, though I know that God is going to be right there with us the entire time, he can't take ALL the pain away. I have tried to give it all to Him, but even though it's not as bad as it would be without Him, I do still hurt. I'm doing better now that I finally got a good nights sleep. And, I pray that I will get another good nights sleep tonight. Although I am saddened by the expanding rash and what it could mean, I am glad Sophie decided to go ahead and come home. Three services and waking up at 5am when you don't feel good because you have to follow your dad around his job isn't easy. And, since she's not feeling quite up to par, I totally understand her wanting to go ahead and come home. I know she will miss seeing her friends in Sugar Land, but I am sure she needs her rest. This could be an interesting week ahead...

Goodnight friends! J

Here we go again

I really am starting to wonder if doctors really know what they're doing. I realize that it's natural to doubt, and they're certainly more educated than I am. I just wonder because as I write, Sophie's rash is worse, her cheeks are flush and she has a headache. She is in good spirits and though she's dreading the thought of ANOTHER biopsy later today at the dermatologist, I think she knows se'll be okay... Eventually... I am hopeful that we will get something to help her be comfortable through this while her body adjusts to whatever is going on. LCH, eczema, keratosis, etc... Who knows. I just know my baby doesn't feel too good and I want her to be better... This is such a long road.

Yay!!! For now...

PRAISE GOD: the doctor called and for now, ordered no chemo! The PET Scan showed no increased inflammation in her skull and though he wants us to watch her real carefully and still wants us to see the pediatrician to look at the rash, but for right now NO CHEMO!! YAY!!!!!

Prayer for today

Crossing my fingers that we will hear from the doctor today about a path forward. I feel like everything is on hold til then. I'm prayerful that it is taking so long might mean good news. I hope so... Because in the mean time there is still a lesion in my little angels head that is eating away at her skull and that just creeps me out!

This disease is just scary and the wait g is the hard part...

I will post more later... Right now I'm praying for miraculous and supernatural intervention. I KNOW it is possible because I saw it happen with Aiden. God, my father and my friend, I KNOW you can see us through and heal her!

Ttyl, J

Life is precious!!!

This morning Sophie woke up and her gums were bleeding after she brushed her teeth. And not the hey kid, you need to brush your teeth more often, bleeding. It was not cool. I called TCH to let them know and I got her ready school, and thankfully, she was in good spirits as we got the bleeding to stop. Also, I got a call back from TCH and they said that the doctor wants us to come in for his next available, and that's not until March. So, we have been ordered to go to the pediatrician for the bleeding gums and her other symptoms and her next available is Friday. And, she went to the dermatologist and got some steroid cream for the rash yesterday... So, now we wait... and pray that she has no other symptoms. She said he would likely call me very soon with the test results from the other day. I am hopeful and waiting (albeit not as patiently as I probably should be) for his call.

Of course, I will update later if there is any news... Here are a few pictures from the last year and a half that I thought I would share... well, just 'cuz I want to share... I hope everyone has a good Wednesday and remember that you are loved!

Monica June Photography 2010. She did an amaizing job
capturing his personality. He talks on the phone all the time. hahaha

Taken by yours truly at her Cheer competition.

Sophie loved that hat... taken by Kristen Sibrel at the Picture People

This image was taken at the Picture People just over a year ago.

This image was also taken by my precious friend Monica. She really is amazing. Monica June Photography.

This was when Sophie and I went to see Tangled on our "date night".

This was taken during our long cold winter... He was outa there!

Sophie is VERY artistic and her art was showcased at one of the open houses.

Aiden's First Birthday Party!

This was Easter of 2010. One of the few trips we were able to make out of town.

This was taken at Aiden's day care before he had to stay home full time due to his illnesses

This was during our girls only trip to San Antonio this summer.

I am so blessed to have two terrific kids. I tear up when I look at these pictures knowing how precious life is! Hang on to it people!!!

Talk to you soon, J

A song to sing...

Sophie has always had a song to sing. In fact, tonight I can hear her singing herself to sleep to the lullaby CD she's had since she was a baby. As we wait (as patiently as possible) for results, this really brings joy to my heart.

Today was a good day for us. Sophie went to school and her awesome teacher called me to offer a vote of confidence and cheer us along as we continue on this journey. I realize we've got a long road ahead, but things like that help a lot.

Sophie's birthday is only a few weeks away and we're really eager to know the treatment plan so we can plan a celebration for her. She's really into horses and arts and crafts and loves pink and purple. I think I am going to try to find her something cheap but fun. We can't afford much right now, but I'm sure we'll get by. God provides for us in so many ways.

Thank you so much for your continued prayers... Not much to report tonight...

G'night friends, J

Hope through pain...

Today was so hard. I know there are going to be rougher moments than this, but this one is right up there. I worked 'til 11am and then I went to pick up Sophie to go to her PET Scan. She was not happy about potentially having to get stuck again. But, with everything, I have promised to be honest so when she asked me whether or not she was going to get stuck again or not, I had to say yes. Honesty stinks sometimes.

They're going to stick me AGAIN?

So, we arrived around 12:30 to the medical center and she was checked in. She was NOT happy and kept asking how long it would take. They finally got her stuck around 2:30pm... She's really hard to get a vein on right now and it was absolutely gut-wrenching to watch. They took their time and finally got the injection in so it could do it's job.

My veins like to roll, YAY ME!

So, finally, they took us into a nice cozy room where she could watch cartoons and relax a bit. She bundled up in a warm blanket and then I put her Tinker Bell blanket on top. She was MUCH happier and when I told her that she wasn't getting stuck anymore today, she was delighted!

NO MORE NEEDLES TODAY? WOO HOO!

Needless to say, she was beat. She hadn't had anything to eat all day and she was emotionally spent because during the little "needle break" they took, she confessed to me that she felt that her whole life from now on was going to be terrible and started to cry. I don't know how to soothe that. I don't know how to make that better... except to tell her that yes, there are going to be some terrible parts, but that I was always going to be right here. I kept having to tell her to take deep breaths and to look into my eyes and she would see the strength she needed. I told her that I want nothing more than to trade places with her, and that if I could take the pain away, I really would.

After about 45 minutes, they called her into the room with the scanner. The thing was huge... But she was so excited that there were no more needles I got a great big smile out of her.


REALLY, MOM? AGAIN?

 I am sure she got annoyed with me following her around with the camera, but I don't care. I wouldn't trade that smile for anything in the world. A few moments later, after explaining everything to us, the nurse put her into the scanner. It was very cool and I was able to get a bunch of pictures. And, surprisingly enough, I was able to talk to her most of the time.

There she goes... this was the part where they scanned her legs...

First, she was put in with her head the other way around, and this was the last part, where they were scanning her calves and feet. Sweet angel, all I could think was God, I truly hope this scan comes back alright. She needs to return to her 'normal' life now.... this has just been a station break, and everything will return to normal soon...

I have faith in the Lord that this is all going to be okay. And, just as importantly, I have faith in my little family. As I looked into her eyes, I knew that we were going to be alright no matter what the outcome of this (or any other) test. God has equipped us to and will continue to give us the strength that we need to handle ANY situation.

As I tucked her in tonight, she said that she thought every day was going to be terrible like this one and said that she wishes she never found "Ouchie the Bump", and I told her that it is going to be okay. All we can do is go into this life one day at a time.

I realize that there are a TON of kiddos out there, far sicker than mine and tonight my heart goes out to them and their families. I realize like I've never realized just how hard this can be on the families as well as the children themselves. I am just truly sorry if your child has or had to suffer a rare illness of any kind. My heart goes out to you!

Can I just eat, please?

I heard these lyrics today again for the millionth time I wanted to share them with you...

Sara Beth is scared to death

To hear what the doctor will say

She hasn't been well

Since the day that she fell

and the bruise that just won't go away

so she sits and she waits with her mother and dad

and flips through an old magazine

Till the nurse with a smile stands at the door

and says Will You Please Come with Me?

Sara Beth is scared to death

cause the doctor just told her the news

between the red cells and white

somethings not right

but we're gonna take care of you

six chances in ten it won't come back again

with the therapy we're gonna try

its just been approved it's the strongest there is

and i think we caught in time

and sara beth closes her eyes

and she dreams she dancing around and around

without any cares

and her very first love

is holding her close

and the soft wind is blowing her hair

Sara beth is scared to death

as she sits holding her mom

cause it would be a mistake

for someone to take a girl with no hair to the prom

for this morning right there on her pillow

was the cruelest of any surprise

and she cried when she gathered it all in her hands

the proof that she couldn't deny

sara beth closes her eyes

and she dreams she dancing around and around

without any cares

and her very first love

is holding her close

and the soft wind was blowing her hair

it's quarter till seven

that boy's at the door

and her daddy ushers him in

when he takes off his cap they all start to cry

cause this morning where his hair had been

softly she touches just skin

and they go dancing around and around

without any cares

and her very first true love

is holding her close

for a moment she isn't scared...

"Skin" by Rascal Flatts

Goodnight friends, J.