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:

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:

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! 


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.


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.