Monday, December 30, 2013

Lula Update

Yesterday's update from Lula's mom:

"Today has been more quiet. I miss church, but Lu's just not up for leaving the house these days. She has spent 90% of the day on the couch, taking pain meds every two hours or so. I miss sleep, but I can't think about her waking up and not having one of us ready to hear her and to help her."

For those of you who want to continue in helping this family, a good way to do so is to sign up for the Meal Train and pick a night that you can take them a meal.  We want to do our best to keep Lula's parents out of the kitchen, so that they can spend as much time as possible loving and caring for Lula and her siblings.

To sign up for the Meal Train, please CLICK HERE.

Thank you all for your continued hope, love, support and prayers for this family.  We love you so much, Lula!

Thursday, December 26, 2013

Second Christmas

It's called a "Second Christmas", and it's the greatest gift that Lula's family received yesterday.  Here is last night's update from Lula's Mom:

"We had a lovely Christmas - thank you all for you love and prayers and happy wishes. I have so much to say right now, but I am completely overwhelmed with exhaustion, contentment, thankfulness, passion, resignation, anxiety and peace. 

Tonight Lula is a happy little sleeper, tucked in tight, blessed with family and food and presents, galore. Our beautiful young men have had a second Christmas with their sister and are enjoying each day we have together. We are playing lots of board games, listening to music, watching movies, making art together.

Let's hope for sleep tonight. So much love to all of you.

And a final Christmas request, from me: If you are estranged from someone you love, take the time, swallow your pride, get the help you need if you're trapped in addiction, in order that you can make peace. The LOVE we have for each other is all that matters, here. The LOVE we give, the grace we have, the way we share and reach and treat one another... these are the things we will think of in our final days. Don't wait.
You are so loved. Even if you feel unloved. You are not alone. Even if you feel alone. You are unique and remarkable and there IS a purpose for your life. You have a gift to share. Don't let your light go out - and don't keep that blaze quiet. We all need each other."


Please keep your prayers constant for Lula and her loved ones.  Also, as you spend time with family, friends and even strangers during this holiday season, please don't forget to do what Lula's mom instructs:  LOVE each other.

Merry Christmas and Happy New Year from everyone at Robie's Got Faith!

Saturday, December 21, 2013

With Heavy Hearts

With very heavy hearts, we ask everyone to please send all of your prayers, love and support to Lillian's family tonight:

"12/21/2013
by Michelle Creech
Baby girl joined the angels in Heaven this evening. Steph, Josh, and Grandma Karen were there to hold her during her last moments. The doctors look off all her wires and cords, and she was able snuggle with mom & dad one last time.

Steph, Josh, and Logan will bring Lillian's ashes home to Boise this week. We appreciate everyone's support during Lillian's journey to Heaven. An update will be posted with details of Lillian's memorial service.

Love to all."

If you would like to make a contribution to help support Lillian's family during this very difficult time, in Lillian's memory, please click the link below:

http://www.youcaring.com/medical-fundraiser/luvin-up-lillian/96981

Tuesday, December 17, 2013

A Late Night Update from Lula's Mom

Lula's Mom provided an update on Lula's condition late last night:

"UPDATE: Hi everybody! I'm sorry for such a late update - I know many of you have been praying for Lu and holding her in your hearts! She is feeling really well tonight! The pain med combo we got together is working well - though she hasn't needed any this evening. I think she's got morning fights ahead of her. But I think we've got a good combo right now, so I feel better prepared for tomorrow. 

She is happily sitting in her bed, working on her "gifting" list. Today she painted a picture of a fairy angel who remains, as yet, unnamed. She hung out with the brothers, daddy, me and Sean and we all watched the new Wolverine movie together, tonight. She's all sleepy smiles. 

While it is hard/sad/bittersweet watching her make this list and listening to her tender and thoughtful directives for how I am to give some of them out, I feel the embrace of Light and Goodness and Love every time she talks about it. She has such a heart for all of us she is leaving behind. And she is quite certain that she's only leaving us for a while - a fact about which she reassures me from time to time.  

***

I know you're all wondering, so I'll just put this one thing out there - she's leaving Joe to me. I know he *is* just the best horse ever, but try not to be too jealous! 


P.S. - Lula wants everyone to know that she has a rule:  No black at her service.  She wants people in greens, blues and purples.  And she prefers bowties."

Thank you for all of your prayers yesterday.  Let's all be sure, as we start the new day today, to ask for God's favor for Lula, so that she can start today with the same smile that she ended yesterday with.  

God bless you today, Lula!  Team Robie's Got Faith loves you!

Monday, December 16, 2013

Update from Lula's Mom - Please Pray!

This morning's update from Lula's Mom:

"UPDATE: Lula's pain levels seem to have gone up quite a lot in the last 24 hrs. She is really uncomfortable - everywhere. We've got pain meds to help, but this is no fun at all. 

She has started talking with me about some of her things and who she wants me to give them to, after she passes away. *mommy moan*"


Please pray!

Saturday, December 14, 2013

Lula Continues to Smile Lots!

God has blessed Lula with comfort, peace, smiles and lots of laughter these past several days, and we thank Him for His love and faithfulness in caring for this special girl.  We also thank all of you who have been constantly keeping Lula in all of your thoughts and prayers.  Your prayers do make a difference in the lives of Lula and her family.  Their family would quickly attest to that.  So, please keep praying for Lula to keep on smiling!  Here is yesterday's update from Lula's Mom:

"UPDATE: Lu's had a happy happy day. She's feeling pretty good. She's not up for the house switch this weekend, so her daddy and her cousins and auntie and uncle and nana & papa are coming to her this weekend. It's a full house! 

At last count, her platelets were up to 77, on their own, so that's good. Doc is super enthusiastic for Lula to get her 2nd Christmas this year! 

Loves!"

Thursday, December 12, 2013

A Couple of Photos of Beautiful Lula

As part of her early Christmas celebration, Lula gave her Dad a nice camera, so that he could he could photograph some of the special moments and memories that the two of them share together.  Today her dad shared these beautiful photos of Lula that he recently took.  So, we wanted to be sure to share with all of you.  You are beautiful, Lula and we love you very much!  We are praying always!



Tuesday, December 10, 2013

Lula Update

Lula with her mom and her twin
brother, Chaz, at the Boise
Philharmonic's performance of
Handel's Messiah, last Saturday night
We got to see Lula's mom last night, and she informed us that Lula has been feeling really, really good these past few days.  She said that there's color in Lula's face and a light in her eyes that she had not seen in awhile.  Also, she said Lula has slept soundly the past three nights, which she has not done in a long time, simply because the tumor typically causes pain in her back.  But, recently the pain has gone away.  Lula's mom is so very thankful for everyone being in constant prayer for Lula.  We are confident that God is answering those prayers, and is holding Lula in His arms to ensure her peace, comfort, laughter and smiles.

Here's the most recent Facebook status update from Lula's mom:
"UPDATE: It's weird. Lu is looking and feeling great! She's energetic and sassy and ready to go spend the night at her daddy's house. We're all doing well. Loves to you all!"

We continue to ask God for Him to heal Lula, simply because God wants us to ask without ceasing for those things we sincerely hope for in our hearts, so that through her healing, He may be glorified.  We also pray for an abundance of continued peace, comfort, laughter and smiles for Lula and the rest of her family.  God is faithful, and we continue to expect great things from a great God!

Thank you all for remaining diligent in keeping Lula constant in your prayers!

Tuesday, December 3, 2013

What's Going on in Lula's Home Today?

Photograph provided by Chad Estes of Starry Night Media
Lula's mom describes a bit about what's been going on inside Lula's home these past few days, and explaining some of the discussions that she's been having with her kids:

"At any given point in the day, I am a grab bag of emotions. Joy and laughter can so easily turn into tears - and huge swells of sorrow into illogical hope and excitement. 

I love the gift of time with my kiddos, praying with Gabriel, talking with Chaz about who we trust and why and what that means - how we can KNOW we are loved even if it doesn't FEEL like it sometimes, talking with Lu about the excitement about her adventure into heaven or healing, and helping Zander to take each moment at a time and not completely melt down with stress. This is the stuff. 

Plus, the Fella is the Best. He feeds the horses and re-starts the fire in the morning so we can stay cozy warm and suck the marrow out of snuggle time. I love my family!"

Monday, December 2, 2013

Lula Update, and Prayer Request for Her Twin Brother, Chaz

Below is an update from Lula's mother, as well as a prayer request for Lula's twin brother, Chaz, who is hurting because of what his twin sister is going through right now.  Please pray for these two incredibly strong twins:

UPDATE: Lula has been feeling good - I think Doc is coming by the house today to check on her. She needs some fluids, I think, but mostly she's doing really well. She's a happy girl. Chaz is having a really hard time, friends. Please keep him in your thoughts and prayers. He needs some positivity light ... or a mother who can better help him process anger. Cuz I'm really lousy at anger. 

Also, Gabriel and Zander are off to school today. With the agreement with the administration that they can call home and get picked up at ANY time. And that I can come and snatch them home any time *I* like. Please keep holding them in your shiny light prayers, as well. 

We love and appreciate all of you. 

An Update on One Year-Old Lillian

After discovering that she would not be eligible for the clinical trial T-cell treatment at Seattle's Children Hospital, one-year-old Lillian has since traveled with her family from Seattle back to Salt Lake City and was admitted back into the hospital there on Thanksgiving day.  Her parents are still hoping and praying for a miraculous healing for their baby girl.  Let's all stand collectively with them as family, friends and community in praying the same.  Also, please continue to pledge your financial support to provide much needed assistance to this single-income military family, as they do all that they can do for their little girl in her fight.  To donate to Lillian, please click here.


UPDATE:

12/01/2013
by Michelle Creech

Steph, Josh, and Lillian made the journey to Seattle last Monday (11/25) to see if she was eligible for the T-Cell Immunotherapy Clinical Trial.  Lillian endured various tests over the course of 2 days before they discovered that her lymphocyte count was way too low to be eligible.  She received blood on Wednesday morning, and the three of them headed back to Boise in the afternoon. During their time in Seattle, Logan stayed with family in the Boise-area (I believe he had an extra-special time with Grandma Karen & Grandpa Duke).  After a short-night's rest at the Creech Inn they headed back to Salt Lake.  

Lillian was admitted back to the hospital in Salt Lake on Thanksgiving Day.  Her little body needed care from the experts, as they worried her leukemia counts were getting too high, very quickly.  The next day she received a spinal tap to test the clarity of her spinal fluid, which is a necessity for the next clinical trial.  The Blinatumomab (say what...) Clinical Trial recently started in Salt Lake and they hoped to get Lillian in on it.  More unfortunate news came their way though, as Lillian's spinal fluid had traces of leukemia.

So now, she will undergo another 6 weeks of intense chemotherapy to see if they can clear her spinal fluid for this clinical trial. 

Monday, November 25, 2013

A Very Special (Early) Christmas Celebration for Lula & Her Family!

WHAT?  A Very Special (Early) Christmas Celebration for Lula & Her Family
WHO'S INVITED?  Everyone!  (This means YOU!)
WHEN?  Tomorrow, Tuesday, November 26th
WHAT TIME?  6:30pm
WHERE:  Vineyard Boise Christian Fellowship (4950 N. Bradley St., Garden City, ID  83714)

In light of the recent prognosis and abbreviated timeline given by her doctors, Lula's family has decided to celebrate Christmas early this year...and you all are invited! Save the date, and mark your calendars to join Lula and her family as we come together to celebrate the birth of Christ, and to show our love for this amazingly beautiful and strong girl that we have all come to care for so much. A Christmas dinner will be served to all in attendance, thanks to some very generous donations and the catering services provided by Gordon Epperson of Hurst Catering, as well as several other throughtful individuals who will be bringing along turkeys, hams and other side dishes to share with everyone to make this a feast for everyone! For anyone else that would like to contribute to the meal, you may do so by simply bringing a dessert or tasty treat to share following the meal.

Lula and her family hope that you will join them in this very special time of celebrating what Christmas is truly all about and to show an outpouring of love and support for wonderful and amazing, Ms. Lula!

If you wish to give a Christmas gift to Lula and her family, click this link to find out how: http://www.robiesgotfaith.org/p/donate.html

In Memory of Faith's Great Grandma, Mildred E. Stearns

On October 1st of this year, Faith's 92 year old great grandmother, Mildred E. Stearns, passed away.  At the time of her passing, Mildred's three children, Cheryl, Mary Pat and Rod, requested that instead of flowers, donations be made to Robie's Got Faith in Mildred's name, in honor of her great granddaughter Faith, who is fighting her own battle against leukemia.

Robie's Got Faith is pleased to announce that these funds that were donated in memory of Mildred and her life lived for Jesus, have now been donated by Robie's Got Faith to the family of one-year-old Lillian, who just arrived at the Seattle Children's Hospital yesterday.  Mildred loved children, especially babies, very much.  One of her favorite things to do was to sing children's hymns, while rocking a tired baby to sleep.  She would have loved to have had the opportunity to hold little Lillian.  So, this donation to Lillian's family is very fitting and is exactly what Mildred would have wished for.

Starting today, November 25th, Lillian will begin the process of receiving a new cutting-edge clinical trial T-cell immunotherapy treatment at the Seattle Children's Hospital, which has proven effective in curing leukemia in children, when traditional methods such as chemotherapy have had no affect (which is the case for Lillian).  

Robie's Got Faith is hoping that this T-cell immunotherapy treatment, which has in large part been funded for the Seattle Children's Hospital by the Ben Towne Foundation, is the answer to many, many prayers for a miraculous healing for Lillian.  

As the family faces mounting medical-related expenses related to this treatment and the travel to-and-from Seattle, Robie's Got Faith encourages all of you to also donate to assist Lillian's family in their time of need as they stand beside their one-year-old daughter in the fight of her life.

Please click this link to donate and help little Lillian and her family today:  http://www.youcaring.com/medical-fundraiser/luvin-up-lillian/96981

Robie's Got Faith loves you, Lillian!

Thursday, November 21, 2013

Help Us Clean Up Lula's Yard and Hang Christmas Lights!

We are assembling a crew to help clean up Lula's yard (rake leaves, trim trees, mow lawn, etc.) and get it ready for winter on Saturday, while Lula is out Christmas shopping.  This same crew will also be hanging up Christmas lights at Lula's house, so that when Lula comes home from shopping, she has a nice bright and festive house to come home to.  If you are interested in being a part of this crew, please email us at info@robiesgotfaith.org, and we will provide you with more details.  Thank you to those of you who will be a part of this yard clean up and Christmas light hanging team for making this the best Christmas ever for Lula and her family!

Wednesday, November 20, 2013

This Evening's Lula Update from Lula's Mother:

This evening's Lula update written by her amazing mother, Kat. By the way, the Christmas party that is mentioned at the bottom of this update...EVERYONE (that means YOU) is invited! Please plan on joining Lula and her family on Tuesday, Nov. 26th at 6:30pm at the Vineyard Boise (4950 N Bradley St, Garden City, ID 83714) to celebrate a very special Christmas with Lula. And, if you're looking for that "perfect" gift for Lula and her family, check out this link:  http://www.robiesgotfaith.org/p/donate.html

"UPDATE: All you wonderful people are such a miracle of blessing to us. I know this is a long one - but read to the bottom, there's good stuff, there.

Lula's surgery went as well, or better, than we could have expected. To explain, she had an emergency procedure to remove the ridiculous amount of fluid between her heart and pericardium. She had an AMAZING team working on her - three very kind, caring cardiologists - one of whom has only been here for 3 months and only operates on adults, but agreed to do Lu's surgery. Not only did they perform the surgery, they stayed here until almost midnight to make sure that she was doing well.

We are planning to head home around 5 today. We have set up a plan with hospice care for doctoring at home.

When I told Lula about the news, she started crying. She cried to God for him to stay with her and we cried together. She asked questions about Heaven. She asked about telling her brothers. We had impossible discussions about hard topics. My head still spins. We discussed what a DNR (do not resuscitate) order is and what, exactly it means. Lula decided that she wanted to allow certain things, during the surgery if they were needed, but that if she died on the table, she did not want any "heroic" measures done to bring her back. "It's okay. Let me go."

Right? I know you're crying; I am too.

Today we talked about the practicalities of dying. Burial or cremation? Viewing or No? Who to do the service? Where? "Someone better pray for the brothers..." she said, obviously worried about them.

Twilight Zone.

OK! Now, focus for a minute - there is some fun we'd like to share.

We have decided that, since we will most likely not have our wondergirl at Christmastime, we are going to have a big huge Christmas party for her and "the brothers," next week. It will be Tuesday Night, next - at the Vineyard Christian Fellowship in Garden City. 6:30. Food, music, food, decorations, food, art, food... and if you are reading this, then you are invited. We would love to have you come party with us! She is planning her outfit, and thanks to everyone who has donated toRobie's Got Faith, Lula is going to get to go on a shopping spree and buy presents for all of her family. She is super dooper ooper schmooper excited.

  
 to you all. I cannot thank all of you enough for your love and support, your encouragement and your hope. We are blessed blessed blessed."

A Very Special (Early) Christmas for Lula!!

A VERY SPECIAL (EARLY) CHRISTMAS FOR LULA!! In light of the recent prognosis and abbreviated timeline given by her doctors yesterday, Lula's family has decided to celebrate Christmas early this year. We want to do something special to bless Lula and put a BIG smile on her face as she celebrates with her family. Please click the link below, and please DONATE today to bless this girl with the opportunity to do something very special and meaningful for the ones that she loves. We have already told Lula about our plans, and she immediately lit up and became very excited by the idea! So, please DONATE today and please SHARE with everyone you know! Lula needs this to be the best Christmas ever, and her family needs your support for the expenses that remain in this fight and beyond. Thank you for your love, your prayers and your support! Merry Christmas, Lula! You know we love you!

Lula Update, as of 8:30am This Morning

As of 8:30am this morning, stopped by the hospital to check in. Lula was sleeping soundly in her bed in ICU. Praying that the day goes as scheduled, and that she gets released later to go home to spend quality time with her brothers and her animals today. Thank you all for your love and your continued moment-to-moment prayers. God is good, and He continues to shine through this courageous little girl and her family. Please, Lord, keep them immersed in your peace and comfort as they bravely travel this path set before them.

Lula Update, as of 11pm Last Night

For friends and family that have been praying for Lula last night and this morning, I do not know much, but what I do know is this: When I left the hospital around 11pm last night, they had just finished the procedure where they set the catheter into her peracardium and had drained 200ml of fluid off of her heart. All of that fluid was building up pressure on her lungs which was causing much difficulty for her breathing. They set the catheter without any cardiac issue, which was the main concern for last night's procedure. They then had placed a PICC line, which will allow the doctors to more easily be able to treat her with medicine when she returns to the hospital. The procedure seemed to go as the doctors had hoped and without any additional complications (Thank God for so many answered prayers!), and as I was leaving, friends and family members were being allowed to go back and see Lula to spend some time with her. The doctors are hoping to be able to allow Lula leave the hospital today, as they are wanting her to be at home with her family and her animals. Thank you all for your prayers last night and your love for Lula!

Tuesday, November 19, 2013

Just Lots of Love and Lots of Prayers for Lula Tonight

Simply ask for God's mercy, grace and peace for Lula as our hearts break and our souls cry out tonight. Please pray, everyone, for this girl who has touched a special place in all of our hearts in uniquely different ways, through her smile and her amazing unending spirit and love for those around her. 

This update just posted by her mother:

"UPDATE: Scans today revealed that, not only is the cancer ridiculously everywhere, but the pericardium (the sack around her heart) is full of fluid. This is a really dangerous scenario. Right now, what we're looking at is, worst case scenario, she has an attack and we lose her tonight. Best case? Three more weeks.

We are heading into surgery within the hour where a specialist will attempt to drain the fluid from around her heart and leave a drain that she can then (hopefully) go home with. Please pray for us. All of us.

No one is ready for this."

We won't stop loving you, Lula!

Monday, November 18, 2013

Get Well Soon, Lula!

Prayers for Lula, please, as her body fights an ongoing sinus infection and oncoming flu.  Here's an update from Lula's mom:

"UPDATE: Lu is home, still sick. We moved from sinus infection to the flu, I think. She's really puny, but hasn't thrown up for several hours, so that's good. Thank you for all your prayers and loves. Back to the girl!"

Friday, November 8, 2013

Lula Begins Her Naturopathic Therapy

On Wednesday this week, Lula and her mom took their first day-trip up to McCall to begin her naturopathic therapy as she continues to fight cancer with that big beautiful smile on her face.  From this point forward, Lula will make a weekly trip up to McCall to visit her naturopathic therapists, Sue, Luann,  Brandi and Darcy (pictured below).  For Lula, this is a hands-on experience, as she is actively involved with the therapies being administered, she's actually helping in making her own medicines (also pictured below), which, you can see from her smile, she enjoys doing.





Robie's Got Faith continues to pray for Lula as she embarks on this new therapy in her continued fight against cancer.  We pray for miracles daily, as well as grace and comfort for this inspirational and incredible little girl of faith, and the rest of her amazingly strong and courageous family.  We love you, Lula, and will not stop praying for you!

Thursday, October 31, 2013

Please Pray for One-Year-Old Lillian!

Please be praying for one-year-old, Lillian, as she fights a fever in the hospital and will be undergoing an intense round of chemo for the next five days, in hopes of producing a healthy enough blood sample to be submitted for consideration of a T-Cell therapy clinical trial being conducted at the Seattle Children's Hospital, whose research for this cutting-edge therapy has been funded by the Ben Towne Foundation (www.bentownefoundation.org).  

Here's a current update from Lillian's mother:

"Here is an update on Miss Lillian. She was admitted into the hospital yesterday when she spiked a fever after her blood transfusion. We have also talked with the dr about doing a clinical trial in Seattle. So starting tomorrow or Thursday for 5 days she will undergo an intense round of chemo to get her counts low enough for a healthy blood sample.

Thanks again for all your thoughts and prayers."

Lillian's family is in need of as much prayer and support as you're able to provide.  Currently, her family is very much in need of financial support, and a fundraiser has been set up.  If you have not already, please go to: http://www.youcaring.com/medical-fundraiser/luvin-up-lillian/96981 and please help this beautiful little girl and her family fight!

Wednesday, October 30, 2013

A Current Update from Faith's Mom

As we continue to pray and provide as much love and support for Lula's family as possible, we also wanted to let everyone know how Faith is doing, as some of you have asked.  Below is an Email recently received from Faith's mom, which provides current status with respect to Faith's fight against acute lymphocytic leukemia:

***

Hello friends and family,

Faith continues to press on through the last phase of treatment (Maintenance).  This phase includes lots of chemo pills, which have become a normal part of daily life for Faith.  She is scheduled to go in on November 7th for a Spinal Tap.  As far as we can tell treatment is going as planned.  Life for Faith has been busy with homeschooling, bike rides, swimming lessons and weekly play groups at church.  She is very excited to start Irish dance lessons in just a few days!   Prayers are being answered as we watch this precious girl become stronger each day.  God is so good and we thank Him for all of you who have been praying for her.  We continue to trust in our loving Father and know He has his arms wrapped around Faith.  We love you all and thank you again for keeping Faith in your prayers!

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust."  Psalm 91:1-2


Rachel

***

For Faith, Lula and Lillian (who we've only just recently become acquainted with), every day presents unique circumstances and challenges that these girls must face with their families, as they continue to battle and fight with all of their might.  These three girls, their moms and their dads all need to be in your prayers daily.  We simply ask everyone to continue to pray hard for each one of these beautiful little girls, and to continue to hold their families up with as much love and support as you're able to muster.  Thank you all, and God bless you Faith, Lula and Lillian!  Robie's Got Faith loves you girls!

Tuesday, October 29, 2013

Results from Lula's CT and Bone Scans

Following is an update provided by Lula's mom this afternoon, regarding the results from yesterday's CT and bone scans:

"UPDATE: Our scans today were not good. There are many more lesions in her lungs, more in her liver, questionable lymph nodes, & a possible tumor in her thigh. Without treatment, Doc says we *might* have her till the end of the school year (next spring). We are planning to start palliative treatment (less toxic, she keeps her hair, shouldn't get sick, etc.) this week & hope for more time than that. 

Just so you know who our Lula is, when I told her what the doc said, her response was, "When is the end of the school year?" 
Me: Next May. 
Lula: Well... we better do some treatment then, because that May is our birthday and that would be way too hard on Chaz.

That's right. That's Lula."


Thank you all of your prayers for Lula's family.  Please continue to pray and to love this sweet little girl and her amazing family.  God bless you, Lula...you are simply amazing!  We love you so much!

Monday, October 28, 2013

Update on Lula's CT Scans and Bone Scans Today

Lula's mom has just shared an update on the CT Scans and Bone Scans that were conducted today:

"UPDATE: Lula and I just got home from the testing rigmarole. It started with the need to place an IV that required three pokes before we got it, contrast for bone scan injected in the IV, then the CT. After the CT we finally got to eat - about eleven. Then, back to the hospital for the bone scan. The bone scan took about 30 minutes of lying perfectly still - she is such a trooper! 

I really couldn't see much of the CT scan, but on the bone scan there was a spot on her thigh that looked really weird. Doc says it may be nothing and that we should wait until the radiologist's report is back before we jump to any conclusions. That's really hard, though! 

Results appointment is tomorrow at 2:45. I'm going to try to be a normal human being until then. Thank you for all your love and prayers and support. You guys are the best. 

P.S. Monique, who owns On the Fly, the convenience store/gas station at the corner of Collister and State lets Lula come by EVERY SINGLE TIME WE GO TO THE DOC, or a scan, or the hospital, and pick out treats to help her on those difficult days. Thank you so much, Monique - we love you! And if any of you are looking for a place to spend your dollars that isn't just a corporate stop, try the Fly." 


Thank you all, again, for all of your prayers and love for Lula.  Please keep praying, as the family awaits the results from those scans.  God bless you Lula!  We love you so much!

Please Pray for Lovely Little Lula Today...

Please pray all day today for Lula and her family, as Lula goes in for her CT scan and bone scan this morning.  This can be a very scary and nervous time for Lula, her mom and the rest of her family.  So, we ask that you please pray for calm in the midst of today's storms, and an overwhelming sense of peace and courage for this very special little girl and her family today, as she goes through these tests and scans.  Lula goes in for her CT Scan at 8:30am today (right about the same time that this update is being posted) and her bone scan at 12:30pm.  So, if you can remember, please be praying especially hard for her during these times.

Here is the most recent update on Lula's current condition, as posted by her mother on Facebook on October 22nd:

"UPDATE: I know I haven't posted much about Lula, lately. Sorry about that. We are waiting for the next scan, on the 28th. I am trying my best to close my eyes and pretend the day will never come. We are so tired tired of "waiting for results" and "information"... we just want to be free! So, I haven't posted much. She's been feeling good, cancer-wise, though she was hit, like several of us at home, with a yucky crazy head, nose, throat cold. She's feeling better and better and took herself back to school today. In other news, I am getting to take her to see P!nk in concert on the 28th - and she is so dang excited! P!nk is her favorite."

Thank you for all of your sweet love and support for Lula, and for keeping her in all of your thoughts and prayers today!  We love you, Lula!

Thursday, October 24, 2013

A Very Special Request from Robie's Got Faith

This is Lillian Davidson.  She is one-year-old this month, and is from Idaho.  At four-months-old, Lillian was diagnosed with leukemia, at which point she was administered chemotherapy.  The chemotherapy has had no affect on the cancer that is in Lillian's body.  Her doctors, therefore, have stopped the chemo treatments, and have no additional medical treatments that they can provide Lillian with.

So now, all Lillian's mom and dad can do is wait.  With hearts broken, they wait, and they pray for a miracle.  This is where you come in:

1.  First and foremost, we ask you to pray.  Robie's Got Faith has faith in the power of prayer.  How could we not?  Those who have been involved with Robie's Got Faith have experienced, first-hand, how God intercedes in and among those who humbly seek His grace, His mercy and His provision through the focused prayers of collective individuals.  He has been faithful.  So, we ask you to please pray for Lillian, her mom, her dad and the rest of her family.  We ask you to please pray for God's grace for this family, for this moment that they are living.  We ask for you to pray, along with her mom and dad, for an amazing miracle.  Robie's Got Faith believes that our God, by His will, is more than mighty to save.  And, we believe that He still performs miracles today.  So, first and foremost, please pray.

2.  We ask you to please give.  While Lillian's family is praying and hoping for the best, they are also living in the moment, and wanting to provide the best for Lillian's life today.  They are also looking to the future, and are wanting to prepare financially for the day when they may have to say goodbye to their little girl.  The family has set up a fundraiser, and are wanting to raise $5,000.  Currently, they are at the half-way mark, and have raised almost $2,500.  With only $2,500 remaining to meet their fundraising goal, we ask you to please donate to Lillian by visiting her fundraising website at:  http://www.youcaring.com/medical-fundraiser/luvin-up-lillian/96981

Robie's Got Faith thanks all of you in advance for your response to this very special request by providing your prayers and financial support for Lillian and her family.  Lillian deserves the BEST today!

Tuesday, August 6, 2013

Lula Updates: The Week in Review

Last week was a very long, emotional and trying week for Lula and her family.  Thankfully, Lula is now home, where she is able to go outside and breathe fresh air, hang out with her brothers, play with all of her pets and animals and ride her horse, Joe.  Thank you everyone for all of the love and prayers you are continually sending Lula's way.

Below are last week's updates from Lula's mom, in reverse-chronological order (starting with the GOOD NEWS first, of Lula getting to go home from the hospital!):

Saturday, August 3rd
UPDATE: We got to go home! Yea! The 4 o'clock xray showed up the same as the morning xray and that is really good news. We'll see the doc for a follow up on Tuesday. Thank you all for your prayers and loves and support. I'll post pictures of the girl getting to ride her horse again, tomorrow night.

Friday, August 2nd
UPDATE: well, we are still in the hospital. The X-ray this morning showed a bubble still there but we are going to be hopeful. They took her off of suction & we will have another X-ray in the morning. If it's good they will take out her chest tube. If it's not, they may find a way to send her home with a portable suction pump. This child is so very ready to go home. We got to go outside today - we stayed for a long time, enjoying the sun & the breeze. I have some lovely pictures I will post when I get access to better inter webs than the hospital offers. 

Thank you all for the good Jujus. Keep 'em comin'!


Thursday, August 1st
UPDATE: waaaaahhh! Waaaahhhhh! Oh wait, that's not an update - that's me whining. One more day one more day one more day. But there is good news - doc is happy with the progress in the X-ray. One more day on suction then, tomorrow, on to trying water seal & see if she starts collecting air again or not. SHE REALLY WANTS TO GO HOME. But she's art-ing it up today again so that's good.

In other news, I recently learned what "twerking" is.  So, yeah, now my life is complete. (don't google it if you don't know, you'll regret it. Suffice to say it's buttshaking you will never see me doing!)

In otherother news, I'm not sure how to feel when I can tell other docs/nurses have read Lu's updated chart & are now sad faced & "I'm sorry" ing. I'm just not ready to be sorry yet.

In otherotherother news, our room looks like an art/party/bed sheet & blanket factory exploded in it.


Wednesday, July 31st
UPDATE: Lula is feeling better this morning. There is still a bit of air in her lungs so doc is keeping her on suction for another day. She's working on calorie intake today & enjoying time with her uncle Dustin! They will do another scan in the morning... Yea, waiting!

Tuesday, July 30th
UPDATE: Lula's surgery went alright this morning. Hopefully all the leak spots are stopped... Two more days (at the very least) in the hospital. This girl is super done & ready to go home. She's back in her room, resting, while the music therapist softly strums her guitar. Music therapy is the best. Well, equine therapy is *actually* the best but Joe is Waaay too big to get in her room. Loves.

Monday, July 29th
OK. Here's the deal: They are putting her under in the PICU and re-adjusting her bandages around the chest tube to make sure sure that the air in her lungs isn't coming from around the tube. Then, she will be back on suction for a few hours. Then, she'll be on waterseal again. Then, if things are still bubbly, she'll go back under and into the OR tomorrow morning. Apparently this happens sometimeswith lungs that have been highly radiated. The tissue changes consistency and doesn't seal up as well as the a healthy pair of pinkies. She's doing alright. Keeping her head up. But, seriously! UGH!

In other news, I am taking advantage of her dad's time off and I'll be here with the boys. They need the time. I never thought they'd spend virtually an entire week at the neighbor's house. Please pray for/think of/ good juju Chaz - he's kind of a wreck about his twin sister and he's going to have to have a blossom of positivity somewhere in his personality to get through this and do well on the the other side of it. I am more worried about him than anything else right now.

Lula knows exactly what's going on. She knows what all of this "means" and we're doing our darndest to help her talk about her feelers a bit at a time, but let her just forget about it and play "normal," too. It's a weird beam to walk on. She will feel so much better when we get her out of the hospital - but I'm a wee bit discouraged because this much trauma, post lung surgery, doesn't give me a lot of hope for future ops. I dunno.

Stay in the middle. Stay in the middle. Stay in the middle.
(That's code for living in the moment, not the future or the past. One day at a time, one moment at a time, accepting hardship as the pathway to peace.)

And, yes, for all of my recovery friends/family, I am and have remained sober through this adventure. Just to put your minds at ease. I'm probably doing a lot better than I "should" be. 



Thank you all for your LOVE.  The SmithCoes

Friday, July 26, 2013

This Week's Updates from Lula's Mom

For those of you who love Lula and are keeping her in your continual prayers, here are some recent updates that her mother has provided these past few days. Now, more than ever, Lula and her wonderful family need your prayers, love and support.  Please keep this family continually close to you moment-to-moment through prayer.  

Lula, we love your smile, your kind and giving heart, your never-give-up attitude, your care free spirit.  You are the strongest person most of us will ever have the privilege to meet, and you are undoubtedly a hero to so many of us.  We love you so much, Lula!:  

***
Monday, July 22, 2013

"UPDATE: Hey everybody - thanks for your patience with the update. Lu's surgery started (officially) at 8:15 this morning. It was scheduled for 4.5 hrs, but the doc anticipated a 2-2.5 hr surgery. Instead, we didn't get to see her until about 3:00. 

The doctors were able to remove the tumors, but there were complications. Due to all the radiation therapy Lu has received, her lungs are not a normal consistency & they were "stuck" to the sides of the lung cavity, in a few cases, and, unfortunately stuck up against her heart, as well. The team was able to get out the tumors and took a bit of the pericardium (the sac that contains the heart), and the lung wall for biopsy. We should get those results on Wednesday. 

We will have another scan, but doc hasn't decided when because they want to wait the optimal amount of time to be able to clearly view the lung, post surgery. At this point, nobody is talking about this being curative. However, neither is anyone able to say "this much time" or "that much time". 

Worst case scenario - a tumor grows in just the wrong spot and she leaves us *very* quickly: super quick - 6 months. Less worst case scenario - things keep growing but we're able to pluck them out or keep them at bay for a while: a few years. Best case scenario - these two tumors are cut out and the cancer stays gone (please please please).

So, we wait. And we hope. And we pray. And we eat organic. And we do a lot of juicing and take our vitamins. And we ride our horses. 

We're in the PICU tonight - should be on the regular floor tomorrow, depending on the air drainage from her lung. Please pray. Everybody. We still have time for a modern day miracle."

***
Tuesday, July 23, 2013

"Lula's back is achy today - mostly because the chest tube that is draining fluid & extra air from her chest cavity runs along a nerve that can cause back pain. They are trying to increase her epi meds, because she HATES anything like morphine. This girl does not love medicine.  Please pray her some comfort today."

***
Wednesday, July 24, 2013

"UPDATE: We got the biopsies back today. The lung wall was clear, but I'm sorry to 
report that the pericardium came back cancerous. I would love to answer all your questions about what we're doing next, but I have no idea yet. Please keep us in your prayers.  to you all."

***
Today - Friday, July 26, 2013


"UPDATE: There is still a bubble in Lu's chest cavity. She will being going back into the PICU today - she has to be sedated and have her chest tube "adjusted". They are trying to get that bubble to rise up and get out of her. She is not happy about this. The kid needs to catch a break."

Monday, July 22, 2013

This Evening's Lula Update:

WE LOVE YOU, LULA!  

This evening's update from Lula's Mom.  Please hold this family up with your love and your prayers.  So much to pray for tonight.  So much...

"UPDATE: Hey everybody - thanks for your patience with the update. Lu's surgery started (officially) at 8:15 this morning. It was scheduled for 4.5 hrs, but the doc anticipated a 2-2.5 hr surgery. Instead, we didn't get to see her until about 3:00. 

The doctors were able to remove the tumors, but there were complications. Due to all the radiation therapy Lu has received, her lungs are not a normal consistency & they were "stuck" to the sides of the lung cavity, in a few cases, and, unfortunately stuck up against her heart, as well. The team was able to get out the tumors and took a bit of the pericardium (the sac that contains the heart), and the lung wall for biopsy. We should get those results on Wednesday.

We will have another scan, but doc hasn't decided when because they want to wait the optimal amount of time to be able to clearly view the lung, post surgery. At this point, nobody is talking about this being curative. However, neither is anyone able to say "this much time" or "that much time".

Worst case scenario - a tumor grows in just the wrong spot and she leaves us *very* quickly: super quick - 6 months. Less worst case scenario - things keep growing but we're able to pluck them out or keep them at bay for a while: a few years. Best case scenario - these two tumors are cut out and the cancer stays gone (please please please).

So, we wait. And we hope. And we pray. And we eat organic. And we do a lot of juicing and take our vitamins. And we ride our horses.

We're in the PICU tonight - should be on the regular floor tomorrow, depending on the air drainage from her lung. Please pray. Everybody. We still have time for a modern day miracle."

Lula Surgery Update:

Lula surgery update received from her mom at 10:30am: "Doc just called out - they found both tumors and are going to be able to get them out with the scope. No opening her up bigger than that! Yea! This will make her recovery a lot easier. "

Prayers for minimal pain and ease of recovery already being answered! Thank God for his mercy on this sweet little girl!

Lula Surgery Update

Surgery update received from Lula's Mom at 8:40am: "She's back in the operating room and under, but surgery won't actually start until 9. She is getting an epidural for post surgery pain management. Surgery itself expected to be 2-4 hours."

Continual prayers this morning PLEASE for sweet little Lula and her family!

Important: Please Pray!

In less than one-half hour, at 8am, Lula will be undergoing surgery in an attempt to have the two largest growing tumors removed from her lungs.  While her doctors do not believe that this will be a curative surgery, we ask you all to please pray for God's hand to touch and heal this little girl that we have all come to love and care for so much.  Please be praying, also, for strength and peace for her family today.  Please keep Lula and her entire family very close to you in all of your prayers throughout the morning.  If ever there was a time to be praying for Lula, today's the day.

Thursday, July 18, 2013

A Mid-Summer Faith Update

video 

Thus far, Faith has had a "normal" summer, and has been able to enjoy the usual summertime activities that all kids should be allowed to enjoy.  We are thankful for this, and of course, are thankful for the fact that she is feeling well and that the chemo that she is being treated with, is keeping the cancer out of her blood.  We do ask, that you continue to keep Faith and her family close to you through your prayers.  Above is a video of Faith happily flying a kite with her cousins during her recent trip to the Oregon Coast, and below is an update from her Mom and Dad:

"Hello friends and family!  

Faith turned 7 years old on July 14th.  With all that Faith has gone through, each birthday we celebrate with her is that much more special!  Highlights from her birthday were her new pink bike and her favorite meal of spaghetti and strawberry short cake.  She also had a great time with her friends at family camp during her birthday weekend.  

We've been enjoying the freedom that this last phase of treatment (Maintenance) has allowed us.  Faith goes to the hospital for treatment once a month and continues to take chemo pills daily.  Spinal taps are every three months.  She continues to have a healthy appetite when on steroids!  Her hair is growing back and she feels great.  She even made a 5 mile hike with very little help! 

Highlights of the summer have been visits from family, trips to the coast and water
balloon fights.  She has also enjoyed trips to the zoo, swimming lessons and sleepovers with friends. 

As far as we can tell the treatment is going as planned and Maintenance will be complete May of 2014.  Your prayers and support have been huge in getting us this far along this journey and we cannot thank everyone enough.  We would ask that you continue to keep Faith in your prayers over these next few months.

Much love,

Aaron and Rachel"


WE LOVE YOU, FAITH!!