History

Journal History

Wednesday, December 20, 2006 1:11 PM CST

Christmas Blessings to All!

First ... as many of you know, Brent Nason was brought back to St Jude from Vermont via air ambulance on Monday. Tonya and Link gave him the option of what he wanted to do and he wanted to go 'home' to St Jude. They have had to stop the treatment he was receiving as there is considerable tumor involvement in the liver. (have I told you lately how much cancer stinks?!?!?) Brent is a brave young warrior and such a beautiful little man, from the heart out. He and his family had our hearts from the start. Our prayers are that God leads them thru each and every minute giving Brent joy, comfort and peace and his sweet Momma & Daddy strength and encouragement. I know the family, friends and St Jude Team around them are giving all the love and spoiling they can to our little friend. God already has this worked out and we all know He carries us providing every detail along the way. I know the Nasons would love to hear from you if you would like to drop them a line at www.caringbridge.org/ms/brentnason

If I were guessing, I'd say the way things are going at this fast and furious pace ... this will be my Christmas update. (and duh, it's been 2 wks since my last update). As you well know, I prefer for life to be busy but I think I've loaded the platter a bit heavy the past week or so. I can't even blame it on Christmas shopping because I completed that in a matter of 4 1/2 hours yesterday ... yep, yesterday. (I'm pacing myself .. ha!) I knew exactly what I was buying so I got in and got out of each store. I'm not your typical shopper ... I'm not into the dilly dally browsing process.

We decided on Monday to move last weekend starting on Thursday and actually the majority of what I wanted to move in was completed by Saturday, plus still worked two shifts at my part time job and squeezed in two of Eli's performances at our church Christmas program. So ... needless to say, I have been non-stop since last Wednesday night and it has caught up with this ole gal. I know this time of the year is usually hectic anyway but like a nut, I just throw a move into the mix. But you know ... it's just ok. We're fine and I'll sleep when I'm 80. (ha)

Eli is doing well ... school is going good but he's ready for a break. He's looking forward to Christmas and made sure I knew exactly what he wants. I do remember the lists being longer in his earlier years but less expensive! ha! He can be such a 'young man' at times it makes my hair turn more gray to even talk about it. I'm really proud of him ... he's a good kid (like most, when he chooses - smile) and he takes good care of his Momma which makes my heart smile. He is my little man. I better enjoy him still wanting to spend time around his Momma because I know those days are getting shorter. Oh well, it's just all part of being a teen.

In quoting our dear friend, Dr. Ray, in a recent email, I think he pretty sums up how I can experience such heartache and yet feel so amazingly blessed in the same breath. This is very profound and I can honestly say, this is from his heart because he is affected by each child in amazing and yes, sometimes heartbreaking ways. He truly is great doctor, researcher and especially, a dear friend that I cannot imagine making this journey without.
"I still cannot get my soul to reconcile the pain
and the goodness of life.
I cannot get my mind around how deeply we are able to love,
and how loss can invade that unspeakable priviledge."

I'd be lying to you to say I don't miss my girl or that I didn't hope things would have worked out differently ... but you know, they fell into place exactly the way God knew they would. We did receive a miracle and that was she was sent to us in the first place. And what a good, wonderful God to share such a beautiful little spunky girl who brought us all such joy ... I miss her every single day yet I know with each passing day it's one day closer to seeing her again. And most importantly, Our Lord who made it all possible for us. He continues to give us so many gifts but I love the familiar verse that talks about "Faith, Hope and Love ... and the greatest of these is Love." He truly is the Author of the Ultimate Love.

I know I promised a more defined update of the St Jude Marathon but today is just not going to be it. (sorry) My most recent email from St Jude regarding the race is that it raised over a $1,000,000!!!! Absolutely incredible! And what an experience it is ... and all for our St Jude kiddos!

We trust everyone has a wonderful Christmas this year. Know that our hearts are full of blessings because of you. As I've said many times before, we are so thankful you chose to walk this journey by our sides. What marvelous gifts God had in store when He sent us you! And most importantly, He sent the Ultimate Gift of His precious Son whose birthday we celebrate this time of year. Can you imagine the amazingly beautiful scene in Heaven as our sweet Angels get to celebrate with Him??? What a sight!!

Thank you again for your love, friendship and most of all, your prayers. Have blessed Christmas and know there's a curly headed, blue-eyed Angel's family who love you dearly!!

Only By His Grace - Trish

Thursday, December 7, 2006 11:58 AM CST

OH MY OH MY OH MY!!!!! GO TO JAKE'S WEBSITE!!!!! And trust me, you better be sitting down!!!! Way to go Staci & Don!!! Pennies from Heaven ... ya think?!?!?!? ALL I CAN SAY IS WOW!!! (Like you taught me Staci!) GOD IS GOOD .... YES ALL THE TIME ... GOOD!!Love ya'll!!!
www.caringbridge.org/la/jakeowen ok ... if their website is not showing the news, (for some reason it disappeared) copy & paste this link. Sorry, you just gotta read it!! WOW! http://www.shreveporttimes.com/apps/pbcs.dll/article?AID=/20061207/BREAKINGNEWS/61207012

Tuesday's update:
Ok ... it's one of those times I can't quite get my emotions / thoughts all collected to sensibly describe the Race Weekend. As strange as this may seem ... (go figure, this is Trish you know!) ... here's my attempt with just a few words about The Race, Our Family & Friends, The Weekend -

AMAZING
OVERWHELMING
BREATH-TAKING
THANKFUL
BOUNDLESS
SURREAL
HUMBLING (thanx Sara)
BITTERSWEET
INCREDIBLE
EMOTIONAL
GENEROSITY
HEART-WARMING
INSPIRATIONAL
LAUGHTER
FELLOWSHIP
UNBELIEVABLE
HOPE
MILESTONES
MEMORIES
(and above all ...)
LOVE - Lots and Lots and LOTS of LOVE!!!

That's all I can give right now ... you know me, I'm soaking it all in. I will say the unofficial numbers are in and there were over 8700 participants raising an excess of $800,000 for our ST JUDE!!!! That exceeds the $450,000 the race raised last year. WHOOO HOOOO!!! Way to go everybody!!

Love, love, love to all ... I'll get my thoughts gathered into one pile and will return with a more indepth account of the weekend. Thank you for your continued prayers for us and especially please continue to lift Brent Nason and his family!

Only, and I mean ONLY By His Grace - Trish

Friday, December 1, 2006 10:23 AM CST

Well ... just wanted to let you know that despite the inclimate weather we received - Angel Emma Grace's BIG RED TRUCK & CARAVAN are headed to Memphis late this afternoon!!!! WHOOO HOOOO!!! You know it would take a full blown white out to keep me away. Our crew has increased to 23 now and we've hit our goal PLUS totalling $2595!! Thank you so much for your precious generosity!

We got ice & snow but I'm praying the sunshine that is beaming brightly today will have the roads dried off so we can travel safely. Once we get to I-40, we should be just fine. Please pray for safe travels for all the participants who are headed in from ALL over the country. I received an update from the St Jude Marathon that said they anticipate over 8,000 this year!!!! Is that not amazing?!?!? Like I've said before, it is such a humbling experience to see all the enthusiam for our St Jude kiddos.

For those of you who may want to join the CHEER QUAD (no jumping required - smile) ... we are planning to be at 2 posts during the race. I've talked to Aunt Mo and we're doing the same as last year - so Team Jake, Team Christal and Team Emma Grace will be on the sidelines cheering!! The 1st station is on the corner of Poplar & 3rd Sts in front of the church. There's a parking lot right east of church which is perfect. What an AWESOME site to see the initial start of the masses running your way down 3rd street ... this is a great place to cheer. Then we are going to be posted on the corner of Poplar & Dunlap (which is the street in front of LeBonheur Children's Hospital). This is the 12 mile marker so we can cheer the halfer's to the last leg of the race. They will be looking for a pep rally to get them thru. Once our crew of 5Kers get done we are headed straight to Cheer Post #2. Come out and join us ... what fun it is!!!

Keep praying for Brent Nason as he is in Vermont fighting a new infection which resulted in his port being pulled. He is still on the vent and doing well. Also, please lift his sweet Momma & Daddy in prayer.

Also, please remember Emma Grace's Daddy as he has been having some health issues that are now being resolved thanks to his staying on top of his routine labwork. St Jude taught us well, eh? We know there's a blue-eyed curly haired angel who's helping to look out for her Daddy.

We love you all bunches and are ever thankful for your prayers, friendship and love. Have a blessed weekend to all!!

Only By His Grace - Trish

Monday, November 27, 2006 1:42 PM CST

Greetings to All!

I trust this entry finds you all had a blessed Thanksgiving! We made it good … way too much eats but lots and lots of good family time which always surpasses the wonderful food. (and you all know I’m ALL about the food department!)

Before I go any farther … please remember our sweet Brent Nason. As you probably already know he is in Vermont doing treatment. His dear momma, Tonya, and I talked yesterday morning as they were going to be intubating Brent soon. He is having problems due to no gag reflex so they need to protect his breathing by placing him on the vent. It will be much easier to monitor his pain meds with him on the vent as well. We’re joining them in prayer for comfort and peace for everyone. We know all too well how difficult it is to be in their shoes and I’m praying the vent will be short term for our sweet Brent. God knows all about this and already has it figured out. Please especially remember Link & Tonya as they faithfully stay with Brent as he receives specialized treatment. I know they would love to hear from you at www.caringbridge.org/ms/brentnason

We are geared up and headed to the St Jude Marathons & 5K in Memphis this weekend!! We’re looking SO forward to seeing our sweet friends with Christal’s Crew in the “1st Annual Bling Fling” (now, ain’t that appropriate for Angel Christal??) who have a dozen or so participants, the Jake Owen Believer’s who will be present in massive proportions with I think 124 plus participants (WOW) and of course, Angel Emma Grace’s crew in the “2nd Annual Grace Race” will be joining the bazillions. We have 19 participants as of today who will be wearing their pink & purple shirts this year honoring “Angel Emma Grace and Friends”. It’s amazing the outpour of love and support for not only our family but the many St Jude families who are represented in this incredible event. I know Aunt Mo has the “cheering sections” mapped out and said she will be drinking hot chocolate cheering her heart out for everyone. I can imagine that I’ll be wishing I was by her … ha! It will be a grand time though, we’re looking forward to honoring our sweet Angels & their friends and again, we want to thank everyone again for your support for our kiddos!!!

Please pray for safe travels for the many, many folks who come from all over the country to be St Jude Heroes. The weather is predicted to be bitterly cold and we’re praying the “s” word will stay away for the weekend. But you know how weather in the South is … UN-predictable to say the least! We always say here in our neck of the woods “if you don’t like the weather, hang around it will change before you know it!”

In my time of reflection with particular focus on Thanksgiving, I can’t help but be completely overwhelmed with emotion for how unbelievably blessed I am. Of course, my immediate thankfulness is my children … God could have chosen anyone to be Eli & Emma Grace’s momma … and wow! He chose me. How thankful I am to be their “Momma”. He has given me so many things … all of which I am completely undeserving. In my most treasured of blessings are the love, friendship and prayers that we continue to receive from you all the time. How amazing you continue in our journey … and most of us met right here through our EXTRA-EXTRAORDINARY St Jude children. My heart smiles and is full because of you. Thank you … We love you and thank God for you always!

Only By His Grace - Trish

Tuesday, November 14, 2006 8:02 AM CST

Ok, ok, ok ... being the "Last Minute Trish" that I am, this will be NO surprise to anyone.

We are taking a crew to the St Jude Marathon, Half Marathon & Grizzlies House 5K on Dec 2nd in honor of our Sweet St Jude Angels, support our St Jude kiddos who are still in the battle as well as those who will face this battle in the future.

Yes, yes ... I'm joining Eli in the 5K this year and will be walking ... forget the running. (you all know me better than that!) Last year we had a fabulous time cheering all the participants who were honoring our kids and we're taking a crew to 'cheer' as well. My Aunt Judy's family & friends are participating in the 5K as well as the half marathon and are all running in Emma Grace's honor. Laura aka "Waura" and her sister from Boston are also running in the half marathon. I've also roped some of my cronies into walking with us so it should be a great time ... I know I mentioned this last year but I'm going to repeat ... it is quite the humbling experience to see thousands running in honor of our babies. What an amazing event for an incredibly amazing place that is forever in our hearts ... St Jude.

The Teams I'm aware of are Team Shae, Team Ali, and of course, Team Jake will be there in FULL force as well as Christal's Crew hailing ALL the way from Florida. It is still pretty surreal that we'll be joining hearts in honor of these two recent angels as well as all our Angels. (ugh - but what precious angels they are!!) Chris has decided that she's not driving all this way just to walk the 5K so she busting thru with the half marathon walk. Holy cow! She's one tough cookie! Once I finish the 5K we'll be headed to the sidelines to cheer everyone thru on the marathon.

There is a link listed above ... just click on Emma Grace's picture "No Place Like St Jude" to check out her St Jude Hero page and support Angel Emma Grace's Team. (Thanks to Sweet Tonya Nason for making this link for easy access!! You rock, girl!) I love the statement that Mr. Danny Thomas once made that went something like this ... "It doesn't matter how big the raindrops are that hit the ground, they all make a puddle." It just takes alittle from a whole lot of folks.

We love you all, thank you for your love & support and especially, your continued prayers. Please remember sweet Brent Nason who is in Vermont for an alternative treatment. He is in the hospital with fever and low counts so please lift them up and drop them a note of encouragement if you get a chance. cb.org/ms/brentnason

Thank you again for being the precious jewels you are to our family ... we thank God for you always ... our love to you!

Only By His Grace - Trish

Wednesday, November 8, 2006 7:47 AM CST

Good Day to All! (New pix of the growin boy in photo album ... ok, proud Momma. That's my boy!)

Just wanted to drop and say hello ... we're doing good. Each day has its new 'stuff' but we seem to be getting thru the 'stuff' ok. It's amazing how God clears the brush thru the 'stuff' and leads the way.

Eli's football season is over and they finished 2nd in their conference. They were pretty jazzed and even more so because our Sr. High guys are headed to 1st round of playoffs in Hamburg, AR Friday nite of which the 9th grade players get to go as well. Since their season is over, they are called 'whities' (not sure where that term came from but I'm guessing it's even less than a 'greenhorn'??? don't know) and they get to travel with the big boys to their playoffs. Eli has big ideas that some of them "whities" will get to play ... well, I'm just letting the boy dream. Hey, he's dreamin' pretty big at this point anyway. He got contacts 2 weeks ago and he's really stepping in tall cotton now. I certainly lost out on the "Mom of the Year" award by waiting until the END of the football season to get the boy contacts. It might have been a huge asset to him earlier in the season. HELLO??? Can't wear glasses on the field! Yeppers, I think my sewing machine is running without thread at times. (smile)

We still seem to meet ourselves coming & going but it's ok. I love staying busy and it keeps me occupied from the everpresent reality ... but you know, it is what it is so we just have to stay focused to make the best of it. I have thought time and time again, "how in the world do people make it thru without having God in their lives?" There is a wonderful song called "In Your Presence" and I keep hearing a portion of the chorus over and over again that goes like this ...

I just can't make it on my own.
And if I have You here beside me,
Trust Your nail-scarred hands to guide me,
I know I can make the journey Home.

What a comfort knowing the nail-scarred Hands are holding ours leading us Home. Can you imagine the love??? It is certainly hard for me to get my head around ... yet thank you, Lord my heart is full that You love us more than we can imagine.

Please continue to lift Brent Nason in prayer as they are in the midst of treatment in Vermont. He is also having MIBG scans today so please remember him and check in on them at www.caringbridge.org/ms/brentnason. What a precious family the Nason's are and we hold them close to our heart. We're praying they can knock neuroblastoma in the head once and for all.

Also, please remember our sweet families who have recently watched their babies go Home ... The Raborn's, The Kirkman / Reynold's and the Bratton's. I know it all still seems very surreal at times but with a huge dose of reality slammed into the mix. Thank you for continuing to lift them in prayer as they face their new beginnings.

I'm going to close for now ... I thought it was going to be short and sweet but I got alittle wound up, eh? Please know that we love you more than words can ever, EVER say and we are so thankful God sent such precious treasures to our side. Have a blessed day filled with the beauty and grace He intends for each one of us.

I'm adding a devotion that I 'borrowed' from Brent Nason's site that just touched my heart and I wanted to share it with you. It goes along with what I was talking about in the above thoughts. God wanted to remind me, ya think?? Do you get the same picture as I did that no matter what we go thru ... God deserves ALL the glory and He's there to lead us thru??? AWESOME ... He's just AWESOME!

Only By His Grace - Trish

"Christ will lead you into many situations that will seem impossible, but don't try to avoid them. Stay in the middle of them, for that is where you will experience God. The key difference between what appears to be impossible to us and what is actually possible is a word from our Master! Faith accepts His divine command and steps out in a direction that only God can complete. If you only attempt things that you know are possible with the visible resources you possess, those around you will not see God at work. You will be the one who receives the credit for a job well done, but God will have no part in it."

(no doubt about it ... God has to be in EVERY detail for His honor ... not ours. this life sure ain't about 'us' now is it? It's ALL about Him!) love ya'll!!

Wednesday, November 1, 2006 8:27 AM CDT

This just BLESSED my heart this morning as I read my morning devotion and soaked it in!! Of course, it's from one of my fav writers, Max Lucado in "Grace for the Moment - Vol II". MMMM... good stuff this mornin', good stuff. Thank you Lord, I needed to be reminded and just wanted to share it with you so we can all be reminded Who loves us more than we can ever imagine. Have a blessed day!
Humbled by His Incredible Love,
Trish

A Love that Never Fails
Wednesday, November 01, 2006

“Love never fails.”
I Corinthians 13:8 NIV

Some of you are so thirsty for this type of love. A love that never fails. Those who should have loved you didn’t. Those who could have loved you didn’t. You were left at the hospital. Left at the altar. Left with an empty bed. Left with a broken heart. Left with your question “Does anybody love me?”

Please listen to heaven’s answer. God loves you. Personally. Powerfully. Passionately. Others have promised and failed. But God has promised and succeeded. He loves you with an unfailing love. And his love—if you will let it—can fill you and leave you with a love worth giving.

So come. Come thirsty and drink deeply.

From "A Love Worth Giving"

FRIDAY, OCT 27th, 2006 Update:
Ok ... 21 days is WAY long enough for at least a note of "HELLO!!! WE'RE STILL HERE!!!" Sorry ... to say it has been overwhelming at times would certainly be an understatement. Do you ever just want to hold a hand in the air and exclaim "WHOA THE FREIGHT TRAIN, NELLIE!!"???
(That's definitely an Arkie statement if I ever heard one)

I know this will likely be brief but I wanted to post a note. I've been getting justifiable promptings and it seems when I'd like to post ... my mind goes into either whirlwind or numb status. So ... please bear with me because I can almost assure you that I've not absorbed enough yet to share what is on my heart.

Mom and I were able to attend Jake's Life Celebration service which was quite incredible ... my emotions are still so mixed about even having to be there. I know that I know that I know that sweet baby boy is perfectly healed and playing in high gear with some very precious angels as we speak. It's just the heartbreaking reality, rawness and knowing we'll never understand it in this life that still overtakes me at times. But again ... God knows and I'm so thankful He sustains us through it all.

We are definitely hanging in there ... at times it seems by a thread but we're ok. God's mercy and grace are just amazing. I know I have said this many times over but He is ever amazing to send just what and who we need at PRECISELY the moment we need them most.

It seems life is going 120 mph with gusts up to 147 at times but maybe that's a coping factor that I just need to adjust to for the time being. Eli is growing at the same rate and football has almost come to an end. Next Thursday is his last game of the season for Jr. High Football ... oh, does that mean we'll advance to High School Football next year?!?!? ooops! Let's don't talk about that just yet, ok?

Do you know how very much we love you??? I know I try to share my heart about how grateful we are that God placed you in our lives but again, I just seem pretty inadequate with what we feel in our hearts for you. Know that our cup runs over at the thought of His blessing us with you!

Please continue to remember all our St Jude families and all our St Jude children who fight with everything they've got and then some. Have a blessed day and know you make our hearts smile!

Only By His Grace - Trish

Friday, October 6, 2006 3:22 PM CDT

These are a couple of excerpts I found in Jake’s journal history as I was thinking how Staci & Jin made a blazing trip to Emma Grace’s services with Jake @ LSU hospital just clearing a serious hurdle for septic shock. I felt the Sunday, June 12th entry listed below were especially compassionate sentiments from Mo and I wanted to reiterate them with you. It’s quite appropriate with Jake’s recent Heavenly Flight … hopefully, by sharing Mo’s thoughts of June 2005 plus the message of Sunday service by Bro. Greg, it will be a comfort to the Raborn’s as well as to all of us. I pray it will touch your heart as it did mine … once again 16 months later. Yes, we are headed to West Monroe for services this weekend. Please pray for the many folks who will be traveling but especially, for comfort and peace for Staci, Don, Hunter, Hayden, Jin, Mo, Todd and the rest of the Raborn crew. Love ya all and thank God for you always!
Only by His Grace - Trish

From JAKE’s JOURNAL HISTORY:
Friday, June 10, 2005 9:00 PM CDT
Hello everyone.

Jake is at the hospital still... tonight, safely with good ol' dad. Staci and Jin went to be with Trish and to celebrate the life of a dear child, Emma Grace. Staci just called, and she said Emma Grace has on a boa and has all her bracelets and rings on. We used to joke that they would need to zero out the scale when checking her weight by taking all her "accessories" off to make things right. She said all the flowers are Emma Grace's favorites... purple and pink. She was such a cool kid. I wish you all could have met her. She was wise beyond her years, and so thoughful! …. She was a precious, precious kid!! She will be greatly missed. MO

Sunday, June 12, 2005 10:11 PM CDT
…. As a tribute to Trish, I will say, "Is it odd, or is it God?" Our pastor, Bro. Greg Clark, has been teaching from the book of James. He has been in chapter 5 and started this weeks ago. Lo and behold.... today's verse, as it would be, is "The prayer offered in faith will make the sick person well. The Lord will raise him up." Lots of you have sent this verse to us over the last year. It has become a very special one to me personally. Out to the side of any passage we are studying, I write the date, and sometimes the devotional book or pastor who led me there. Today, out to the side of James 5:13-16, I bracketed the words and wrote,"The week of Jake's remission." Give you chills?! Bro. Greg went on to relate other scriptures about being "well" meaning spiritually and also that Jesus would "raise people up" by taking them to Heaven or from death. I also wrote "the week of Emma Grace's death." We have to remember that she has been made whole. Her parents were, and continue to be, faithful. Emma Grace knew Jesus! The prayers offered in faith also made her well... and Jesus raised her up!! Keep on believing …. MO

We are all brokenhearted right along with the Raborn Crew that we did not get to witness an earthly miracle for Sweet Jake. It's so very hard to understand and I don't think we're expected to for now. Jake was sent on a mission directly from God ... He touched lives all over the world and He let God's light shine thru himself as well as thru his precious family. I truly believe that some are sent to do a job, do it well and sometimes, more quickly than we'd like. And Jake did just that ... no doubt, he did it VERY well. Talk about an incredible brave little warrior ... I imagine, just like Mo shared 16 mos ago, Jesus raised Jake up ... and in my mind, with one arm in the air like the winner of a boxing match or mounted on His shoulder as the player who just scored the winning point. Jake, little sweet man, you just won in the biggest of victories ... the victory of life and JESUS RAISED YOU UP!

THURSDAY, Oct 5, 2006:
FROM ANGEL JAKE'S WEBSITE ... Please lift this precious family in your prayers. We love you all. www.caringbridge.org/la/jakeowen

Thursday, October 5, 2006 3:28 PM CDT

At 3:10PM, our precious son, Jake, earned his well deserved angel wings.

There is no more pain for him.

He fought the most amazing battle.

We always believed in him.

BELIEVED,
Don & Staci

Tuesday, September 26, 2006 9:08 AM CDT

Missing My Baby

Thursday was a very bitter sweet day, sweet remembering the birth of Our baby Girl and bitter because it was just two short years later I would find the Lump that would change our lives forever.

I was ask last Thursday, Sept 21, if I remembered where I was at 6 years ago. Of course I remembered, I was sitting beside my wife’s head with a drape in front of me so that I could not watch them perform the C section. I was tapped on the shoulder and told “ you can stand up and look now dad” and look I did. As soon as my eyes were above the drape all I could see was my beautiful baby girl, the surgeon had her sitting with her head and shoulders above her mothers tummy. All I could do was look and tell Trish how beautiful she was. I watched the team lift her out and clip the cord before passing her to the pediatric team so they could do their evaluations. Once they where done the nurse wrapped her up and handed her to me, of course I was sitting beside Trish so I starting unwrapping Emma Grace so that we could count toes and fingers and just look at our sweet baby girl. The nurse gave me a little time and then told me it was time to take Emma Grace to the nursery, which I had the pleasure of getting to do. My heart was filled with so much joy and love at that moment that it was all my chest could do to hold it. When we arrived in the nursery the nurse had me lay her under a heat lamp and unwrap her then she told me I could open the blinds so the rest of Emma Grace’s family could see her. You could not have wiped the smile off of my face for nothing. There stood one of her brothers and her big sister (which was also pregnant), Nana, Papa, and Nanny and Pa. It is a moment that I will never forget.

Fast forward two years to Sept. 21 2002. The morning started out like any other Saturday, get up at 4:30 so I could get to work on time. This Saturday I was going to drop Eli and Emma Grace off at Nana and Papa’s on my way to work. I had Emma Grace sitting on the kitchen bar changing her shirt, as I pulled the shirt over her head her arms up in the air I noticed a lump about the size of my finger laying under her left ribs. I called Trish in to look at it and ask if Emma Grace had fallen or been hit by one of the kids at the baby sitters, she said that the baby sitter had not told her about anything happening. It was decided then that Trish would take off work that day and take Emma Grace to the doctor. The doctors did blood work and x-rays before telling Trish that Emma Grace had mono and that it had settled in her spleen and enlarged it and that was what was causing the lump, and that she had tested positive for strep. The doctor gave her a shot of penicillin and said to just take her home and let it run its course. Of course with the mono we had to cancel Emma Graces second birthday party. Nineteen days later another Dr. would finally tell us what was really wrong with our baby girl.

GOD IS GOOD ALL THE TIME
AEG D…. Barney
(ANGEL EMMA GRACE’S DADDY)

Monday, September 25, 2006 7:51 AM CDT

Hello Crew!

Quick Reminder - You can make a meal count September 25 by dining at your local Chili's Grill & Bar. Today, Chili's will donate 100 percent of profits to St. Jude Children's Research Hospital. Grab a buddy and go eat for our kids!

I know you're probably keeping up with our little Jake Man to find out he is now off the vent. Eli, Mom and I made a blazin' trip to Memphis this weekend to spend some time with our Raborn Crew ... and you know, there's always a CREW around that sweet little boy. What a wonderful support team of family and friends!! Jake is pretty weak and they are watching him closely since removing the vent. Don felt they would keep them in ICU until Monday or Tuesday then move him to 4th floor where they would have a meeting with Jake's Team to discuss what steps are next. Don is certainly hoping to be able to take his boy home. I got the pleasure of sitting next to Jake's bed, holding that sweet hand and even put my lipstick mark on his precious little 'head knocker'. Before we left on Sunday, I got to see those gorgeous blues! In the midst of everything else going on, Staci & Mo made me a beautiful pair of earrings for Emma Grace's birthday ... using 6 beads in honor of her earthly #6. Thanks Staci & Mo for being such incredible friends who I treasure! Please continue to lift this precious family in your prayers and that Jake will stay comfortable, sharing his joy with all those around him. www.cb.org/la/jakeowen

As well as getting to spend time with the Raborn Crew, we shared the evening with Nancy, Laura, Dr. Ray, Rev Craig, Janie, Janice and all the chillens. The kids had a great time together, especially the boys. The Rev has a rock climbing wall in his attic so Bobby & Eli had a blast! In all the months that have past, with all the life changes we have endured ... my heart is overwhelmed that this crazy crew continues to support and grow thru our shared grief process. We were visiting that nearly 18 months have past since Ali graduated to Heaven with Emma Grace following her 2 months later and as our lives have all of us in various jobs, not to mention locations ... we remain and remain together no matter what obstacles fall in our paths. And it was those two precious girls that God brought us together. What a journey and what joy they brought to our lives ... and they continue to do so with each memory of how they touched so many, the priceless lessons they taught and each resounding laughter they so contagiously shared with everyone. I'm ever grateful that God placed these incredible folks in my life and as Nancy has mentioned many times before ... and I feel the same about you as well ... I can't imagine life without each flower God has placed in my garden of Life. We'll never understand the reason that brought us together but God does and He knew we all would need each other. How awesome is that??

Thank you for your prayers, your love and your friendship. It is ever amazing that God is so gracious to send us you! May you feel the warmth of His incredible Sonshine!

Only By His Grace - Trish

Thursday, September 21, 2006 7:44 AM CDT

HAPPY BIRTHDAY SWEET BABY GIRL!! Don't you know she's having a blast each and everyday with the very One who created her to be born on earth this day 6 yrs ago?? What a precious gift God gave us with you! I love you Emma Grace ... dance on the clouds!!!

Please stop by Sweet Jake's site for their update and please, please lift Jake & the Raborn's in prayer. They are in a very tough situation with what's next if anything. How my heart breaks for them ... those dear friends are the strongest folks I know. Let's continue to pray God will make the decisions for them ... He's already there with each step worked out. www.caringbridge.org/la/jakeowen
Love to all!

Sept 20th, 1pm
PRAYER REQUEST!!! This is copied from Mr Jake's site ... please pray. I've rec'd email from Mrs Dawn who said Don is on his way to Memphis as we speak.

11:00
ATTENTION ALL BELIEVERS AND PRAY WARRIORS!!!!! Mo called Jin a few moments ago and Jin and Staci were crying and upset. The doctors were extubating Jake (taking him off of the vent) and he stopped breathing, there were 9 doctors in Jake's room trying to revive him and get him back on the vent. Jin called Mo back about 10 minutes later and said that Jake is back on the vent (full life support). This is a little ironic because Jake was breathing on his own (over the vent)this morining and they think that he stopped breathing due to a problem with his brain (that his brain did not tell his body to keep breathing when they took him off of the vent). They are going to do a CAT Scan and MRI. Will update when we hear more.
Melissa from Mo's office

9:00AM Update 9/20/06
Hey Crew ... I've yet to update Emma Grace's website but I wanted to let you all know that our little neuroblastoma buddy, Ben Bratton earned his angel wings Tuesday about 5 pm. Nancy Mills (bless her strong heart) has spent quite a bit of time with the Bratton's in ICU recently and she was not sure about services just yet ... they are from Tupelo, MS. Please remember his parents, Lynne & Barry who are having a really difficult time. It's so hard to accept sometimes that it is time to let go and let God. They waited a very long time in their marriage to finally conceive Ben and his is their only child. As you know, Ben has battled this beast very hard especially in the past 3 months being in ICU. His struggles are over and his battle is won ... I just imagine he's being the SUPERMAN he always wanted to play bigger and better than ever. He truly is a real superhero! Don't you know he had a host of friends meeting him?? I know there's one blue-eyed curly haired angel that hugged his neck ... whether he wanted her to or not! (smile)

Thank you for lifting this precious family in prayer ....
Please lift the Raborn's in prayer as they face discussions and decisions of available options. Mr. Don is on his way back to Memphis this evening. God knows ... we just need to pray. cb/la/jakeowen

Love you all,
Trish

ps ... I promise to update about Christal's Life Celebration service soon ... I will preface the entry by saying a humbling, yet amazing "WOW!" (I just envisioned what Staci Raborn taught me & Emma Grace of her kindergarten sign language version of WOW ... 3 fingers on each side of an open mouth!! smile!)

Thursday, September 14, 2006 1:01 PM CDT

PRAY PRAY ... Here's Don's update copied from Jake's site ...

3:50PM
Air has gotten into Jake's heart and possibly brain due to complications from bleeding during the procedure. He is being transferred to ICU. We will know more soon. Find everybody you can right now and pray. Jake is fighting for his life.

BELIEVE,
Don

Thurs, Sept 14th 1:01 PM
This is probably one of my shorter entries (and then again maybe not) but this is what’s on my heart …

Well, considering all that the emotions that have gone on in the past few days / weeks with our Sweet Angel Christal, I think is quite appropriate to finally take the time to tell you what the big news is and was from my recent “Christal Trip” to Florida the weekend of Aug 18th. Excuse me for backtracking but the timing obviously was not right to share this … and now that I’ve had some time to absorb, I’ll give it a whirl. My heart is kaleidoscope of emotions so bear with me.

First, let me say that how incredibly blessed I am that recently I got to spend not only one but two great weekends with Miss Christal. And you cannot know how very thankful I am that it worked out perfectly to spend time with her and her family. In her journey Home this past weekend, it was extremely difficult to be 1,200 stinkin’ miles away because … well, I just know and I so felt I needed to be there for Chris. She has just always ALWAYS been there in critical times for me and I just felt helpless. But you know, God already had that worked out and He’s kept me together with the comfort and peace knowing that I’ll be there soon … as in tomorrow, yeppers … tomorrow. I will forever have a hard time understanding (in this lifetime) the reason for the trip but humbly thankful for the opportunity to be there again. Oh how I wish it for another reason.

Ok … rambling (get back on track – not like I haven’t delayed this entry for a MONTH already!!) … the big news from the weekend of Aug 18th is that Christal’s stepdaddy, Drew accepted Christ after her prayer service on that incredible Sunday!! (I know most of you have already read this on Christal’s site but oh folks! Is it ever worth repeating again, and again, and again!) After Christal’s prayer service – which let me interject was AMAZING to say the least – Christal decided she wanted to be baptized. She had accepted Christ at her school several months back but had never been baptized so she got that taken care of. I had to leave right after Christal’s prayer service to catch a plane out of Tampa (that’s a whole NOTHER story … shew doggies!) Anyway, I’m sitting at the gate waiting on our delayed flight due to thunderstorms in Tampa and I get a call from Vicki – Chris’ lifelong friend from Atlanta. She is talking 90 mph with gusts up to 147 telling me that “you’re not going to believe it but they called us back into the church because Christal wants to be baptized!!!” After the amazing prayer service I’m thinking how perfect! Well, it wasn’t an hour or so later Vicki calls me back again in absolute blubbering tears with more incredible news … that after Christal’s baptism, Drew had been talking to Lori and Bro. Jay and made his commitment to Christ. Need I say that by this phone call Vicki is talking now up to 122 mph with gusts reaching a whompin’ 192!!! Vicki’s excitement and pure joy came thru that phone with a powerful surge and I sat there in joyous tears with her to hear of Drewie’s life changing decision. Vicki said that he and Chris were on their way to be baptized together. (Chris had made her Christ decision years ago but had never been baptized as well) What an indescribable blessing to get to share this experience with the man you love!!

Ok … so now do you see where this is going?? I’ve tried to comprehend the “whys” just like everyone else but like I’ve said before … He knows why and one day we will as well. But getting a small glimpse of a “why” we’ve been blessed for Christal to stay as long as she did … makes sense somehow. She wasn’t finished with her task that God had sent her here to do … touch more lives and God is glorified in the process. It just blows my mind and I can’t even get my head around it but my heart is there and I guess, that’s all that matters. One day, yep, one day … we’ll understand it all.

Please pray for traveling mercies for the many that are headed to Florida for Christal’s Life Celebration service this weekend. I have talked to Chris like a BAZILLION times over the course of the week and Christal’s service is a CELEBRATION to say the least. The visitation is Friday evening with service on Saturday. What a beautiful little life she lead with style, grace and His precious mercy.

Eli & I are headed to Tulsa to spend the night as soon as his football game is over as we have a very early flight out in the morning. I know God is already there as He worked this whole trip out to begin with not to mention, the incredible blessing of knowing Christal and becoming family with her family. What treasures they are!

Please lift Jake Raborn as he is in lung ablation procedure as we speak. The CT scans found more tumors … I just can’t even relay what’s in my heart about this precious family and the battles they continue to meet head on with God leading the way. www.caringbridge.org/la/jakeowen

Also, Ben Bratton is still not doing well at all and the Team feels it’s a matter of time with him. Please lift his sweet family in prayer as well. I wish I could give you a website for him but I don’t believe they have one.

Brent Nason is having a difficult time as well and is not able to walk at this point. They are pursuing more treatment and I just ask we wrap them up in prayer as well. www.caringbridge.org/ms/brentnason

We love you all more than we can ever say. Thank you for continuing to lift all these precious families in prayer. It seems like we keep listing a load of requests on you but knowing you send these requests straight to His throne is a comfort beyond words. May His Sonshine surround you always!

Only By His Grace – Trish

ps ... I promise to update about Christal's Life Celebration service soon ... I will preface the entry by saying a humbling, yet amazing "WOW!" (I just envisioned what Staci Raborn taught me & Emma Grace of her kindergarten sign language version of WOW ... 3 fingers on each side of an open mouth!! smile!)

Thursday, September 14, 2006 1:01 PM CDT

Sunday, September 10, 2006 8:00 AM CDT

Our Sweet Little Christal has earned her precious wings this morning at 8:12 EST. Chris called to say she went in peace and is playing with Emma Grace as we speak. How heartbreaking for all but equally comforting that she went to sleep to awaken with Jesus in her Heavenly Home. No more headaches, walking, running, playing and that incredible smile is back gracing Heaven with her presence. What a blessing that she literally had the Hawaiian Luau of a lifetime on Friday night. That's our girl ... always going above and beyond doing things "her way". Please lift Chris, Drew, Todd and Lois in your prayers as they face the days ahead. Thank you and we love you more than you can know. www.christalinfo.com

Saturday, Sept 9, 7pm:
Chris had Drew call me about an hour ago and Hospice is there ... they are in agreement that Christal's time is short. In talking with Drew he said Chris has Christal in her arms with her daddy Todd right by them and he gave me a honored gift of talking to Christal via speakerphone. Chris knows my heart and that it is right in that very room with them ... how cool they let me talk to Christal one more time. I know soon she's headed to see Emma Grace and it wouldn't surprise me in the least if our precious angel Emma Grace is waiting in the wings, with WINGS for her dear friend Christal to escort her Home ... perfectly healed, happy and whole. Thank you for your continued prayers ... we love you.

URGENT PRAYERS NEEDED PLEEZ: I just got off phone with Chris and it seems after having the blowout party of a lifetime, Christal awoke this morning with a her head hurting. This is a brain tumor child who just doesn't complain of pain. They came on home this morning and Christal is on oxygen, morphine and adavan. She is sleeping with very labored breathing now as it was shallow breathing early. Hospice is on their way to care for our girl. Please lift them in prayers ... please just lift them in prayer. www.christalinfo.com

No news on Ben except they have him fairly stable. He has some internal bleeding but they are not sure where from. Please keep them in your prayers as well.

Thursday Sep 7th:
It seems I keep attempting to give an update but these prayer requests are first and foremost ...

I just got a call from Mylissa Horrocks concerning Ben Bratton. She said it appears he has taken a turn for the worst as his mom, Lynn, contacted them to come to the hospital. Please keep our little buddy, Ben in your prayers and especially, his parents Lynn & Barry. Ben has been in ICU on vent since around July 4th. I don't have any more info at this time but will post as I know something.

Also, I received an email that Sarah Starks passed away last Monday. She had a rare brain tumor and was in remission for several months but it came back with a fury.
Please remember her family as well.

And ... our little man Jake is having the ablation procedure next Thursday. Keep prayin & believin!!

God is already there on each and every request. I truly believe He holds these sweet babes in the very palm of His hand, loving and caressing. They are amazing children sent from an amazing Father.

Thank you all so for your faithful prayers. You cannot know how much we love and appreciate you! (I promise to update soon ... smile)

Only By His Grace - Trish

Wednesday, August 30, 2006 9:07 AM CDT

UPDATE ... Paula Kay left this world around 3:30 this morning in comfort and peace that only God gives. Please remember her family and friends during this heartbreaking time. Thank you prayer warriors as always for your faithfulness in lifting our requests to His throne. You are the best!

PRAYER REQUEST: On of my distant relatives, Paula Kay Thomas, daughter of Billy Dale Thomas and Liz Thomas, had a severe aneurism (spell?) early Monday morning and is in a coma. She still has a large blood clot at the brain stem and the doctors have not given the family much hope. I believe Paula Kay is about 46 y/o, graduate of Prairie Grove. Please lift this family in prayer as they face this very difficult situation. God is there and knows all about this ... you know, He's in control. We just have to trust and believe. Thank you so much ... we love you bunches!

Wednesday, Aug 23rd update
I know you all probably think I've fallen off the side of the earth somewhere but actually ... it's been a high gear kind of weekend / start of week.

You're gonna love this ... I'd really like to fill you in but I'm out the door and just wanted you to know that we're fine ... I promise I'll fill you in as there's lots of GREAT stuff to tell you. More details sooooon ....

Keep Sweet Christal in your prayers, I'll update more later on our sweet girl - YES! I did get to see her and her dear family last weekend!! Gotta visit her website then go to the link that has Christal's upcoming CD release ... oh my, it's beyond amazing. www.christalinfo.com

Also, remember little Mr. Jake ... not sure what the gameplan is but I can tell you I know Who does. Please remember his Momma & Daddy as they find the peace and assurance in decisions God gives them with Jake's treatment. cb/la/jakeowen

I'd also like to ask for you to pray for a special 'unspoken' request. You all are so faithful to just pray and you cannot know how much we appreciate your unconditional love in doing so. Please continue to remember Ben, Brent, Sarah Claire, Madelyn and all our St Jude families whose Angels are in Heaven having their own "school" - much wiser beyond their years with Jesus leading the way.

May His Sonshine surround you and know that we're ever grateful for you!!!

Only By His Grace - Trish

Love you all bunches

Friday, August 18, 2006 2:39 PM CDT

COPIED FROM SWEET JAKE"S SITE ... I can't even respond just yet UGH!! ... love you all, please keep praying and we'll keep believing. Trish

Friday, August 18, 2006 2:33 PM CDT

Scans showed more tumors in the lungs. I had to leave before final report was ready. We will update more later tonight.

Going to airport to pickup Staci and Jake.

All I can do is ask you to PRAY. We are heart-broken but still believing. We will NEVER quit fighting and neither will Jake.

Just pray.

BELIEVE,
Don

No Prayer is Wasted
"All of us can recall times - many times - when we prayed for healing and it did not occur . . . Does that mean God is not listening? I think not, but I also think it is fruitless to try to find an answer to why some people are healed and some are not. Much of what happens on our earthly journey will remain a mystery until we get to risen life . . .
I do not think we can ever say a prayer is wasted. Although prayer may not change a situation and give us the miracle we want, prayer changes us. Through prayer we become more aware of God's presence. Through prayer, we find inner resources and strength we didn't know we had. Through prayer, we are no longer facing our fears and pain alone: God is beside us, renewing our spirit, restoring our soul and helping us carry the burden when it becomes too heavy for us to bear alone."
Ron DelBene with Mary & Herb Montgomery

Hello Dear Ones ... I had to start right off with the above which was brought to my attention from sweet Mrs. Kathryn Campbell in Illinois. She is an incredibly, faithful prayer warrior that we have only met thru CaringBridge and has become a dear friend. What a link to connect with so SOOOOOO many precious friends that we would have otherwise never met. Anyway, she found this on Angel Jacob's site (fl/jacob) and it is precisely what we need to be reminded of. My heart is obviously so very heavy for our Sweet Miss Christal and this is just what I needed when I turned on my computer. Whew ... I'm not quite sure I've heard it so perfectly stated. Thank you Mrs. Kathryn for pointing this out to us!

Well, needless to say, I have been on the horn with Chris a BAZILLION times in the past 48 hours and I'm not sure I even have the words ... oh how I hate with a passion what these sweet babies have to endure. And with Christal - she's beyond amazing. By all medical rationale ... she shouldn't even be here but then again, this is Christal with God calling all the shots. Chris is truly a rock and I have to say that even though the surgery was not an option I'm so thankful that God answered her decision making for her. And what is she doing?? Staying faithful, taking each moment step-by-step. My heart was overflowing last night as I read her entry about how grateful she is that God chose her to be Christal's Mommy. She has told me that several times and reiterated it to me on the phone Tuesday evening. I reminded her yesterday morning that Christal is equally blessed to have her for a Mommy. I've said it once, I'll say it again probably for the rest of my earthly life ... we just don't understand but God does and He's there always with mercy, grace and love - all of which none of us deserve - but He gives it freely.

There's so much I've got racing thru my mind, more so in my heart this morning but I must close for now to absorb and try to sort it out for another time. Please continue to remember Christal, Jake - who is having scans today AND his AFP is on the rise again - UGH!, Ben Bratton, Brent Nason and Madelyn Beamon. We love you all bunches and can never tell you enough how thankful we are that God has placed you in our lives. You are the best!

OHHHH ... remember my little (big) man Eli ... who has his first "Black & Gold" game Friday night. He is so pumped as he earned a starting position in offense and defense. He has been obviously saddened for his 'adopted sister' Christal who he adores as we do. I told him Christal and Emma Grace both would be so proud to be his cheerleaders whether he sees them or not. It's just more than these big brothers should have to face in these precious teen years. God has certainly given them an overwhelming amount of strength and courage to face their tasks.

Ok ... gotta run ... work to do with my physical presence here yet my heart is in Lakeland, Fl. I love you all!

Only and ONLY By His Grace - Trish

Wednesday, August 16, 2006 8:17 AM CDT

8/16/2006 6:24:10 AM (I just copied from what I updated for Chris on Christal's site)

Okie dokie ... this is Momma Trish again and I just hung up with Chris. While driving I wasn't able to take notes so you are having to rely on what my memory retained in this translation. (sorry) Christal's MRI last night shows somewhat more definition than the CT ... the edema (swelling) is taking up better than half of the right cerebral hemisphere - better but still not good. Tumor is pressing against the brain stem, not sure if it has infiltrated the brain stem but definitely pressing against it as you can assume not a good situation either. The cystic quality (which I had to get definition of) deals with the actual dying of tumor) is greater even though there is progression of growth of tumor(s). So this could be good but not sure time is going to be our best friend to find out how much tumor is actually dying. Ok .. I've said all that to say this, Christal's neurosurgeon does not feel that surgery is an option for her. He feels that should he try to go in to debulk the tumors it will cause Christal even more swelling which would be not good. He said there is no reason to keep her in the hospital and is sending her home. They have been set up with Hospice for several months now and obviously built quite a relationship with them so they are in tune with what's going on with her. Her Dr. said that he is not sure of any sort of 'time frame' as he put it "she's an exceptional child and she's surprised us before". (Naturally, we ALL know that, eh??) To say that sweet Miss Christal is 'exceptional' is a great compliment especially from her neurosurgeon but we all know she is that and WAY more. As Miss Susie commented this sweet darling has more tumor load than most people live through and she is coping with grace and dignity. God's grace is quite remarkable ... hence Angel Emma Grace's favorite hymn "Amazing Grace". His grace is certainly amazing beyond words and we are seeing a glimpse of it thru our Miss Christal. Your continued prayers are greatly appreciated and I feel even more convinced as I mentioned yesterday that God has them wrapped up in His strong arms of love providing exactly what each of them need when they need it most. Obviously our prayers are focused on Christal's comfort as she meets each day with that fiesty spunk and humor that we so love about her. Please say an extra prayer for Chris, Drew, Kylie, Lois, Todd, the Hospice caregivers and the rest of the Christal Crew as they tend to Christal's wants, wishes and needs. Again, I know we're not meant to understand but we just have to trust His plan and most of all, His heart. We love you and can never thank you enough for standing ready to be a prayer warrior delivering these requests to the Throne. You all are incredible gifts straight from our loving Father. Only By His Grace - Trish

2:55PM Still Tuesday ...
Chris just called from hospital and was very brief - they have completed the CT and there is definitely progressive tumor growth, they are starting her on decadron and placing her in ICU. Chris said 'it's just not good'. She was getting to walk into ICU and said she would call later. Her dear friend Susie is updating the website so for more info please feel free to touch base there. www.christalinfo.com
Please just lift them in prayer ... I don't have to tell you what I sensed in Chris' voice - I just would give anything not to be so stinkin far away at this moment ... Christal is completely in God's hands with His loving arm around Chris as we speak.
Thank you dear ones, we love you.
Trish

Tuesday, 8/15/06 12:57 pm ...
Here's what I know ... talked to Chris this morning, Christal DID GET TO DO THE CD RECORDING!! Huge blessing as Chris felt a serious sense of urgency of getting this cd cut done while Christal is feeling semi ok. They are headed to the hospital for a CT to see if everything is ok w/ her shunt. Please say extra prayers for Christal and this sweet family. Also, please remember Jake as he and Staci fly to The Jude today for scans tomorrow. Thank you so much for allowing us to bring our requests to you! We love you!! Trish

Monday, 8/14/06 3:19pm ..
OK ... Chris just called and Christal is still being her spunky, silly ole humorous self ... and feeling somewhat better. So, Chris said she is going to put off going to Orlando to see neurosurgeon and having CT done until Tuesday morn. Christal is in the process of "cutting her own CD" (details on www.christalinfo.com) and they are actually scheduled to be in studio early evening tonight. Christal is excited about doing this and so they're headed that way now. Do you feel the wind of the roller coaster?? Well, you can only imagine how Chris feels it right now. So ... please keep those prayers rollin! Thanks and love you all bunches!
Trish

Monday, Aug 14th 2:07PM:
PRAYER REQUEST FOR SWEET CHRISTAL -
Hey sweet ones ... I just now hung up with Chris, Christal's mom, and Christal has been deteriorating (HATE THAT WORD) rapidly over the past 2 wks, sad to say. Even over the past 48 hrs has went from being able to walk and feed herself to not being able to do either. Not to mention in considerable pain which is something Christal never complains of. (Have I TOLD YOU HOW MUCH I STINKIN' HATE this disease?!?!?!). Chris knows what the inevitable is but is just not ready - she wants more time. So, she's taking her to Orlando today to do a CT and see her neuro to see if he is still willing to do the 'debulking' surgery of her tumors to buy her some time?? Oh, my heart is broken for Chris - for the rest of the family as well but especially Chris. I don't know ... I really just don't know but I do know Who does and we just have to trust Him. These babies so deserve such a different life here on earth ... I do know what they now have in Heaven but I hate what they have to go thru to get there. Please say extra prayers for Christal - especially for Chris. www.christalinfo.com
Love ya'll bunches and thank you for your prayers ... Trish

Hey Crew!

Quick update with lots of prayer request please...

Please continue to keep sweet little Jake in your prayers. He was hospitalized at LSU with shingles and hopefully, should get out on Sunday. Jake and Staci will be headed to The Jude for more scans next week so another prayer request for our little man. I know they would love to hear a quick note of encouragement if you get a chance. www.caringbridge.org/la/jakeowen

Also, please remember precious little Christal who is still as spunky as the day is long but continues to have balance and headache issues. This gal is simply amazing especially with all the stinkin 'stuff' going on. I know they would love to hear from you at www.christalinfo.com

I talked to sista Tina for quite awhile yesterday while I was on the road and she is still having lots of problems especially with shoulder and neck. From what I understand she is somewhere between reactive arthritis (from the staph infection) and rheumotoid arthritis. Either way she is in considerable pain but hangin in there as always. Let's pray that this is reactive so it's not something she has to continue to deal with from here on out. Tina LOVES to get messages so feel free to give her a boost www.caringbridge.org/la/stanton

Please continue to remember Danielle Acurio and the Dickerson family as well as the Kristen Martin family since the loss of Danielle's brother.

Also, the 8 yr old grandson of Rocky Hayes (driver for the Traylors) was hit and run in Enid OK. He is still in ICU with staph infection as well as pneumonia. He has severe head injuries as well as lung and kidney issues. They were scheduled to do surgery on Tuesday but had to cancel as the staph infection showed up. Please remember this little man as he fights on.

Our nation, our leaders - the world as a whole - certainly are in need of our prayers as the times continue to be pretty unstable.

Please continue to remember all our other little St Jude buddies: Ben Bratton who is still in ICU on vent, Brent Nason who is having scans next week, our sweet little Sarah Claire who fights her daily struggles yet cancer free - Thank you Lord, and Madelyn Beamon who continues to forge on with positive progress.

We love you all bunches and I apologize for the lack of full update. These issues are ever present and forefront on our hearts. I promise to update with more later ... it's been crazy wild this week but I wanted to drop in to get the prayer warriors on top of these matters. We love you and thank God for you always.

Only By His Grace - Trish

Thursday, August 3, 2006 7:20 PM CDT

Yes ... it's been a day (or two) since my last update and you all should know me by now - sometimes I just take longer than others.

I know you all have to be as thrilled as me to hear that Mr. Jake-Jake is HOME-HOME!!! Hallelujah! Thank you Lord! Don't you know they are all thrilled to be under the same roof again as one big happy family?? I'm ever amazed at God's goodness of allowing us to see His miracle right before our eyes with Jake.

We have a special prayer request for one of our St Jude Mom's, Danielle Acurio and the Dickerson family from Shreveport. Her brother was found on Tuesday evening at his home in Montana. He was 33 yrs old. I found out today that his finance', Kristen Martin teaches elementary school in our hometown of Prairie Grove. We need to remember her family as well please. They aren't sure the exact events that caused his death but we just ask that you remember Danielle's family during this time. Sadly, I understand the hurt of losing siblings and my heart goes out to her and her family.

It has been a pretty exciting few weeks at my new job. It's sounds mighty strange to call it a 'job' because I'm still amazed that I'm earning income while traveling around talking to customers about transporting their freight. I think I may have misled some folks by saying that I was back in trucking doing sales. No, I'm not actually selling trucks but I am selling the services our trucking company provides hauling customers freight from point A to B. It really has been quite interesting and challenging as I get to learn a new facet of the trucking business that I've never seen before. And I ABSOLUTELY LOVE IT!!

Monday and Tuesday I was in Chattanooga, TN and Cullman, AL calling on customers and got to drive thru some gorgeous country. Cullman, AL reminded me alot of home with the exception of their 'rolling hills' were much bigger than ours. But the hometown atmosphere and the really friendly folks made the trip incredible ... and did I say it was business they're paying me to do?!?!? Yep, I'm still trying to soak that one in myself.

While waiting for my flight out of Chattanooga on Tuesday I got in touch with Beth White, Jack's mom - also a neuroblastoma buddy that we met when Emma Grace first started in 2002. She was quite surprised that we had made connections and we got to spend some great time together before my flight out. It was so good to see Jack doing great. He's quite the little miracle boy as well and he looks wonderful.

Eli is growing more each day ... heavy duty into football and the phone stays pretty busy with girls. (Oh my, I just felt another grey hair appear!!) He really is growing right before my eyes yet I still remind him that I'm older and much meaner ... so don't push it fella! He starts school Aug 19th with that also being his first football game. He just returned from church camp last week and had a great time. I think he's getting the picture of how time flies as he can't believe school is getting ready to spark off again. Now, if we can just get the girls to 'spark off' or shoo away for about 20 more years. (fat chance ... I know)

Our Baton Rouge friend, Kristi Leick, had surgery this past Monday on her leg. She is a Ewings sarcoma patient that has been in remission for quite some time. The surgery went well and she's home recovering.

Also, please remember the Marty Kilgore family as they face their new beginings without Marty. They have a large farm with milk cows and a laying hen operation that keeps Kim and her children really busy. The community has been overwhelming in their labor and support of the Kilgore's during this time.

Please continue to remember our sweet friends Christal, Ben, Sarah, Sarah Claire, Madelyn and of course, sweet Jake as he's rompin at home. These children truly are gifts from God and simply His light among all lights.

Hope this entry finds His Sonshine warming your heart as ours continue to overflow with your love and friendship.

Only By His Grace - Trish

Wednesday, July 26, 2006 7:07 AM CDT

Wednesday Update: PRAYER REQUESTS & PRAISE REPORT ...
There are some very special people who need an extra dose of prayer please ... Sweet Christal did not get good news yesterday at The Jude on her MRI. She has growth on the existing tumors and a new tumor as well. When I spoke with Chris late yesterday afternoon she was certainly not expecting this news as Christal is doing so good. It is truly an emotional roller coaster. As I told my sista Chris, I wish I had the words to fix it and make it better. God already knows and we just have to trust Him to carry us thru each step. My heart so breaks for Chris because, well, I know. Please pray for Christal and Chris especially as they make the right decisions together. They are flying out to California tomorrow for a followup with the Chinese doctor who mixes an herbal tea solution which she has been on for some time. Christal's website is: www.christalinfo.com

Also, please remember the Marty Kilgore family from Lincoln as he was severely injured during a fall from a building on Monday evening. Marty is on life support and has severe head injuries. The family was told yesterday there is no brain activity and it is a matter of time. Marty, his wife Kim and family are very involved with the youth and rodeo events in the area. Last word this morning is Marty was still hanging on. His family has made the unselfish yet difficult decision to allow Marty to be an organ donor which will give another family a chance for life. He is 41 yrs old and I know his family would certainly appreciate your prayers.

Nancy Mills called yesterday afternoon to say our little St Jude buddy, Ben Bratton is in ICU on the vent, with VOD (veinal occlusive disorder - which Ali had) and also on dialysis. He recently had a unrelated donor transplant and this is complications from the transplant. Please remember this sweet family as well.

I have a dear friend that is going thru a serious transition in her life and I know she would appreciate your prayers.

Praise...Praise...Praise!!
Nancy also said she heard Little Sweet Jake was at the ZOO yesterday!!! Ain't that a switch?!?!? Thank you Lord!!

My Sista Tina finally got out of hospital on Sunday. The doctors are still uncertain as to the cause of her illness. She was to see a rheumotoid (spell) doctor on Tuesday and I didn't get to talk to her yesterday so I'm anxious to hear what they had to say.

Thank you all for your faithful prayers and I love you bunches. It's such a comfort to bring you these requests and know without hesitation you send them directly to our Lord. Thank you! love, Trish

Friday, July 21, 2006 Update:
JUST WANT THE PRAYER WARRIORS TO KNOW ... I talked to Mr. Jeff last night and my sweet sista Tina was put in the hospital yesterday morn with what they suspect as lime disease. She is in considerable pain which they are trying to manage and are running scans this morning as well as numerous tests. Please lift Tina up for relief, comfort and healing. Also, the doctors determine exactly what is causing her problems. I know they would love to hear from you if you get a chance. www.caringbridge.org/la/stanton You all are the best and we love you bunches! Thank you for your faithful prayers!

Tuesday, July 18, 2006 UPDATE:
Ok ... I know this is not the 12 days of Christmas but it is the 12 days since last update. It IS a nice thought to think of cooler or even cold days rather than the 100 plus degree temps we've been having. WHEW!!! You know, "fluffy" folks like me don't just sweat ... we melt down! Besides, I knew once Jeff updated last week the pressure was on me now ... (ha)

I certainly did not mean to keep anyone in suspense as my update was later than I intended and needless to say, it's been quite hectic, exciting yet a good hectic. Once you get thru this whole lengthy volume ... you may say, 'is that all it was??' But to us ... it's a huge blessing so here I go.

First, how about some amens! and praises for Little Mr. Jake!!! How about blazin thru that last major procedure?? God certainly proved His hand is on the throttle. Now ... ain't Jake a dandy sight for sore eyes?!?!? Well, confession time - Eli & I got to see Jake, Don, Staci & Mo weekend before last. We made a last minute trip to Memphis and rolled into the Jude about 10:10. Knowing the Raborn crew are hoot owls, I knew it would be ok for a surprise visit. Actually, I had contacted Mo while enroute so she had a heads up to expect us. Oh I wish I could truly convey how it blessed my heart to see that sweet boy. Of course, he hid from me under the sheets in his bed on the 4th floor. (And did you know he is in Ali's old transplant room aka The Suite??) I did pretty good being on that floor and in that room once again. I was just focused on seeing the sweet Raborns & Mo. It sure did my heart good to hug some sweet necks. It's been since Day of Remembrance since we've seen them. Please continue to pray for them, especially Sweet Jake, as his body keeps fighting and hopefully, they will be released soon. www.caringbridge.org/la/jakeowen

Well, I'm going to back pedal just a bit to try to relay what an incredible blessing the recent events have been so please bear with me. Since early April you all have been praying for an unspoken need for us. And I thank you for your compassion and faithfulness in doing so ... again, you can never know how you touch our hearts. Well, with a overflowing heart let me share with you, God has answered our prayers. Sometimes we pray thinking He may just send a "peephole" of need and then WHAM!! God opens the entire door. I know that sounds corny but His ideas of answered prayer and ours are often way different. But nevertheless, ANSWERED prayer and we're so thankful!

Many of you know that my background is filled with different areas of the trucking industry ... from growing up as "Dreamer's" daughter spending many days on the road with Daddy as a child (alittle mad when I had to start school and decrease my trucking days on the road with him), to many years later working at the Peterbilt dealership where I was blessed to be in contact with many clients that would be continuing relationships throughout the years, even met Barney and married him while working there (we always said he bought a truck and they threw me in on the deal! ha) then onto being an trucking insurance agent working with my love once again - the independent and commercial trucking community. I even spent several months on the road with Barney right after we were married and got a good dose of "being on the road" even driving from time to time. So, to say I have diesel fuel running in my veins is a pretty safe assumption. (HA)I left the insurance industry to go to work with some 'good ole boys' at Starr Motors Ford dealership and sold vehicles and LOVED it. I have always loved meeting the public and sales. Well, it was while I was at Starr's that our sweet baby girl was diagnosed and the rest ... well, you know how the journey goes from there.

After Emma Grace's Heavenly graduation, I was blessed to get back into trucking once again working for my dear friends the Traylors. And what most of you all do not know, even though I'm sure my journals would reflect if I backtracked and read some of them during that time (which I seldom can or even attempt to read), I went into overwhelming grief and pretty consuming depression. And in a nutshell, I slept for about 9 months. Granted, I went to work from 7 - 4 each day but once I hit the road home in the big red truck my focus was tunnelled on getting home, putting my jammies on and crawling on the couch to shut down. And that went on for right at 9 months. I can't really explain it except that I was emotionally, physically and mentally whipped ... my bucket was empty and I felt I had nothing left to give at that phase of my life. And I thank God that Eli knew enough to stay close to home only venturing to John's from time to time or who knows what trouble he would have ended up in. That's just God's grace - period. Anyway ... even as dark as the days and nights appeared during that time ... God was and is always right there. He truly is beyond amazing and I can never thank Him enough. Many days and nights I'm sure He carried me or let me crawl into His lap or lead me by putting one foot in front of the other knowing I could care less if I walked or stumbled or fell flat never to gain enough umph! to get up again. But still God picked me up time after time after time. He truly is SO good!

(One of these days, I'll go back and read that time period of my "Nine Month Nap" but it's just a step I'll take another day ... someday.)

I had always known that God had blessed me with the job at the Traylor's and more importantly more than just a job, the Christian support that I needed during the season of the past year. In the midst of our (all of our, yours & mine) prayer together over the past 3 months, God opened a door that I've been trying to tell you about in a long sort of way. I received a call from some dear friends back in early May wanting me to pray and consider a position at their trucking company in (get this ...) sales! They didn't want me to answer any time soon, just pray and see if the Lord would lead me into their door better yet His door. Once I later visited with the Traylor's I knew that God had clearly answered my request. It was bittersweet in leaving them and I know that God placed them in my life for a very important and difficult first year.

The long and short of it is ... after a couple of weeks of prayer, God gave me a clear picture of what He wanted me to do and I've been blessed once again with Christian friends at a trucking company whom I've known and worked indirectly with over the past 13 years and yes, I'm back into sales which I love! I'm on my second week and I can't express to you how good it feels to be there. I found a new "gear" that I haven't felt in a very, very long time and knowing that God opened that door, landed me right where He wanted me to be and has given me such a peace about the whole transition. Let me just say, there have been many, MANY times especially throughout Emma Grace's journey that these sweet friends at DMT would 'appear' when we needed them most. One of the many times I remember specifically is when our Sweet Stanton earned his wings and they showed up that following weekend when Emma Grace as well as Daddy & I needed a much needed lift. Well, anyway these dear friends at DMT Services Inc. in Siloam Springs welcomed me 'back home'. And yes indeed, I feel like I'm home ... in the niche of what I love - trucks & sales. I'm learning a whole new area of the trucking world that I've not been around and it's exciting as well as challenging. It just feels good, really GOOD!

Ok ... maybe that was more than I had planned on disclosing but it's the way I saw it from my world. And THANK YOU once again for lifting us in prayer so lovingly and faithfully. You may have known or just suspected or maybe just felt led to keep praying. Thank you! Never let it be said that "everything's perfectly fine and the grief has ended now", it's far from it. I've said many times I don't think the grief or pain ever go away but God allows ways to deal with the hurt and adjust. Believe me, there's not a day much less a minute that goes by that I love or miss Emma Grace more than I did the last. And it will always be that way ... again, God's grace in motion getting us thru.

It's all about timing ... God knew I couldn't have handled this position a year ago. But you know, we've seen it over and over again, it's all about Him and His timing, not ours. So ... THANK YOU LORD for taking care of our needs. And thank you dear friends for being treasures in the walk of life that often has felt like a sprint at times.

Well, I think I have rambled WAY long enough ... can you tell I'm just a bit excited nor that I can praise Him enough for His goodness and mercy?!?!? And I don't think I came close to telling you what truly this whole change has been such a God-send blessing. That's exactly the way I see it ... straight from Heaven and I'm humbly grateful.

Please continue to remember our precious St Jude friends - Jake, Christal, Brent, Madelyn, Sarah Starks and Ben Bratton. These children are amazing and God is certainly working His plan in each of their journeys. We love you all and pray your summer is filled with His Sonshine!!

Only By His Grace - Trish

ps ... I'll try to not get so long-winded next time. Evidentally, I couldn't get by with a quick entry this time, eh?? (smile) love to all!

Thursday, July 6, 2006 11:01 PM CDT

Hello to All!

Hope your summer is going fabulous! This is one of the most brief entries in quite sometime (figured you needed some time to absorb the last entry ... ha). Just wanted to let you all know we are doing just fine - it's really been unusually busy, hectic, soaking in some summer fun and lots of changes going on right now. I'll be sure to let you all in on the new, exciting paths the Lord is leading us on with the next update. He is certainly a loving, gracious God and I'm ever amazed at His goodness.

We love you all, thank you for your continued love, prayer and support. I've said it many times before and you're gonna hear it again ... we can never tell you how grateful we are that God has blessed us with you! You are the best!
Have a blessed weekend and soak up His Sonshine!

Until later ... Only by His Grace - Trish

Saturday, June 24, 2006 10:25 AM CDT

Good Morning to All and Happy SUMMER!!

FIRST and FOREMOST ...
DID YOU HEAR JAKE IS OFF THE VENT?!?!?!? OH THANK YOU LORD!! THANK YOU LORD!!! I just about did a backflip and you all know for a woman of my 'stature' that would be quite a sight to see! Talk about God allowing us to see a miracle right before our eyes. I know that Staci, Don and the rest of the Raborn crew are speechless at this huge event. Be sure to stop by to let them know we're cheering and praying right along with them. www.caringbridge.org/la/jakeowen

Sorry for the delay but it has been a WILD WEEK!! Busy, Wild and Oh SOOO SOOOO much FUN!! We have been in vacation bible school all week at our church. It was quite an incredible experience and I, for one, believe the adults had as much fun as the kids!

We did "Village Bethlehem" and it was quite a production for our small country church but it was so cool and the kids seem to really enjoy it. Of course, the whole theme was nestled in our Bethlehem village with everyone coming to town for the census ordered by that ole Caesar. And you know as the week progressed we had a very special couple show up who found no room at the Inn and had to be sent to the stable where an no ordinary baby was born. The whole week was focused on the prophesy of our Messiah, the birth of Jesus and most importantly, our need for Jesus, our Savior.

There were mesh tents set up outside all over our Market Place village with different interactive shops the kids loved! We have perfume maker, a baker (which the kids helped knead dough for our nightly refreshments of assorted bread and water drawn from our Living Well), a toy maker, instrument shop, coin maker, dye shop, fruit stand, grain miller (which was my task for the week), mosiac shop and even the barnyard which served as our stable with LIVE animals. It was absolutely amazing and each night when the different skits were done the children (and adults) were all eyes and ears. Oh and did I mention that EVERYONE including all the kids were in Bethlehem era costume??

Each child was assigned to a different family 'Tribe' and they had their lesson time together, practiced family rituals of that day together, and ate their evening meal of the prepared bread and water together. You know, with the many kids that attended this week, I did not hear one complaint about 'bread & water' for the evening refreshment. I'm sure it's because they were involved in making the bread and drawing the water from the well. It was awesome!

We all sat on the ground while doing our individual trades with our sweet little apprentices at our sides. Even though the kids did not get to take a 'craft' home from my shop, (being the Bethlehem Grain Miller), they seemed to really enjoy the task of grinding wheat and barley between two stones to make flour. Historically, it took up to 3 hours for a woman in that period to grind enough flour for her family to have one loaf of bread. After my week of finding out EXACTLY what it is like and how hard it is to grind flour, I would be skinny at that rate. The whole week I'm not sure me and my apprentices together make enough for a loaf of bread!

My character did not really care for the Romans or their ways and I got to continue my belief of being a faithful believer that God was sending a true King to live among us. As different vistors thru the village would stop by my shop to discuss the latest news of what was happening that day, it was great to be one of the characters who believed that Jesus was coming to be the one true King, most importantly, our Savior. Beetle Bailey, one of our dear friends, was one of those 'visitors' who specifically was tasked to 'share the exciting news'. It was always great for him to stop by to talk and the kids seemed to be all ears again when we would converse back and forth.

I'm not even coming close to telling you what a blessing this week has been. It's in my heart but it's just not coming out very well. I can tell you that my heart has been overjoyed with re-creating our Bethlehem Village and even though by the end of the week my body is weary, my heart is spilling over.

Many times during the week I would have small children in my shop and often they would plop down in my lap to help me grind my flour. Talk about bittersweet ... oh my heart would race at times to think of times Emma Grace sitting right in that very spot, getting in the middle of what Momma was doing and just being close. I know she would have loved our Village Bethlehem yet I know in my heart she walks, talks, laughs, dances and sings with Jesus every single day. That to me is a beautiful vision and one of which I look forward to seeing some day.

Well, Eli is headed back from South Texas today and should arrive sometime in wee hours of Sunday morn. He's called twice this week and you could tell by the tone in his voice he is having a great time. I trust his blessings have been many this week by working together with new friends and especially, the lesson of helping others with a cheerful heart. I'm quite sure there will be big stories when he rolls back into town.

Barney has been rolling wheels and blowing smoke this week putting some serious miles on his rig. From what he said the coming week is going to be even bigger headed to the west side of the nation for a change. Please continue to lift him in prayer for traveling mercies and for healing windshield time. Our recent discussions have centered on how very difficult life of semi-normalcy is after our child has gone to Heaven. Our conclusions are the same ... ITS TOUGH!!! And it doesn't really get any easier but I think we slowly learn how to handle the pain or adjust to it. Each person is going to grieve differently. There's many books out there on the subject and the ones we've read are really good but everyone is different and we have to do it our own ways. We have too many friends who have traveled down this road of trying to move on after losing a child and we all do it differently. As close as some of us are and believe me, we've compared notes ... the healing and hurting experiences are just as unique as our sweet babies. One thing for sure, no one fully understands the magnitude of each journey like the other parent; your spouse and best friend who helped nurture our precious children. Most importantly and I'm so humbly grateful, God is there ALL the time. In those times when I want to stomp, scream, lay down and throw in the towel ... He so lovingly comforts and lifts me back to my feet, holding my hand to lead the way. Ain't He grand?? I just have a hard time getting my head around how much He truly loves us.

I have to share this story before I close ... in our Praise & Song time this week with our VBS kiddos, they sang "Away in a Manger" one night. For those of you who know, Emma Grace loved that song and could sing it so preciously with each motion in time. When I reviewed some of our home videos after her Graduation to Heaven, I found one of her and Eli singing Away in a Manger. It was priceless and I'm so thankful I thought to turn the camera on them that night in our living room. While the VBS kids were singing, I could invision Emma Grace standing beside her Bubba singing right along with all those precious kids.

I want to say thank you for continuing to check in on us. You cannot know what a blessing it is to see your sweet entries and it's amazing to know God has blessed us with such an incredible circle of believing friends. There have been many times I've wondered whether or not I should 'sign off' of the website but God hasn't fully answered whether that time has come yet. So, until He does I plan to continue to update from time to time. You will never know how your crossing the threshold of our lives has touched our hearts in ways you'll never know. Thank you for your continued prayers not only for our family but our many sweet friends who continue their battles in the world of cancer. Especially please remember, Jake, Christal, Brent and our friend Sarah Starks who has a recurrence and is bravely facing her difficult days without pain meds. She is an amazing soldier of God who continues to share His word despite what she is facing with her own life.

Also, please remember our driver's daughter, Jamie who is finally getting to proceed with her brain surgery. The tumor is found to be imbedded in the brain stem. She has teenage children and is facing some pretty uncertain days.

May this weekend and everyday find His Sonshine surrounding you!! We love you ...

Only By His Grace - Trish

Thursday, June 15, 2006 8:54 AM CDT

Good Day to All!

Needless to say, I’ve let a week (plus) go by without as much as a peep for an update. And of course, Mr. Jeff so gently reminded me to GET ‘ER DONE!!

First, before I say one more thing … how ‘bout a big round of PRAISE for Mr. Jake!!
I talked to Jin Jin and Staci last night and you could just hear the excitement in their voices. Getting to see that sweet little man react and respond while on the vent is an indescribable feeling to parents. And for those of you who have been there … you know. God is certainly working in mighty, mighty ways thru Jake and his family. They are certainly precious folks and we are so thankful God allows our paths to cross. Be sure to say extra prayers as Jake is scheduled to get his “boost” of donor cells on Friday. As always, they love hearing from you … it is so uplifting to read messages that so many people are lifting Jake to His Throne. www.caringbridge.org/la/jakeowen

(I’m really going to backtrack now since I didn’t get to cover it last week … ) My jet-set flight to Florida to see sweet Miss Christal and family was incredible to say the least. When I arrived at Tampa Friday afternoon, my sista Chris picked me up and we went straight from the airport to Mediera Beach. It was “Momma Time”. We got to our room Chris had lined out and our patio doored walked right out to the beach which was 30 foot max from our door. AND in between the beach and our door was an oversized hot tub. Just thinking real quick that I’m being SPOILED! Miss Christal was at her dad’s for the night so it worked out great. Let me just tell you in case you ever wonder where Christal gets her adventurous energy … from her Momma, Chris! She is a shell-spottin-woman! Of course, she knew all the different names to each shell and I, being from the ‘inland’, thought they were all just referred to as ‘sea shells’. (my mistake, obviously!) Chris and I had a great time together just taking time for the momma-girls.

When we picked up Christal from her dad on Saturday, she was still full of the same bag of tricks. Looking behind her dad everywhere because she ‘couldn’t find Ms Trish’. Well duh, she intentionally had her back to me just to make me play the game more with her. Oh my, if I could describe the joy of hugging Sweet Christal’s neck … it was so good to see her again and she really looks good. She’s just as spry and onery as ever. She does have trouble walking by herself but that’s not anything that slows her down. We had a really precious time together … I knew the visit time was short so I savored as much as I could. Chris had some of her sweet chorus friends come over to dinner Sat nite all of whom I had heard of but none I had met in the past. Sweet, sweet ladies who I really enjoyed getting to laugh and visit with AND hear some Crazy Chris stories. Ha!

Let me just say, I knew that seeing Christal and spending time with her would flood my memories with times we spent together in Memphis. So with that in mind, I was somewhat prepared … I had not taken into account that when I went to play in Christal’s room that Emma Grace would be EVERYWHERE. We had given Christal lots of Emma Grace treasures and thankfully, she is still able to wear lots of the clothes but not only was it the clothes, it was the toys, the pictures, the girlie-girl stuff but more than that it was the spirit that Christal carries everyday of her dear friend, Emma Grace. She talks about her with love that only she would know from her friend. It was all quite obvious just spending time with her … they truly are friends joined by the heart.

I can never be thankful enough for the friendship that God has blessed us with Christal and her sweet family. It’s more than I can comprehend. Leaving Sunday was not the favorite part of the weekend by any means but I’m so grateful for the precious time I did get to spend with them. And no trip could be complete without going to the Dollar store which Christal was ALL over! Ha! Christal kept telling me I should “get rid of that stinkin plane ticket and just stay in Florida”. Oh, if life were only that simple.

Alrighty then … I want to share that the Angel Garden gathering last Tuesday was full of mixed emotions and overwhelming by the show of loving family and friends who joined us. I know there were several who truly wanted to be there but schedules just didn’t allow it … regardless, they were there in spirit – I could feel it. It is still unbelievable that a whole year has come and gone since our baby girl took wings for her Heavenly flight. There was a sweet, tender spirit that joined us at the Angel Garden and when the balloons were set sail they raced into the sky with purpose and determination. None of them really ‘lolly gagged’ along … they were high and out of sight long before I was ready for them to be. Sound like a sweet blue-eyed angel we all know?? A dear friend had thought to bring a Dora balloon which I might add ‘danced on her head’ all the way to realms unknown. It was quite poetic and seeing all those balloons dance with determination made my heart smile.

Thank you for your continued prayers, for your love and most of all, your unending friendship. The guestbook entries, emails and phone calls have been beyond amazing and we thank you for your love and compassion. Like I said last week, I have realized that Emma Grace not only touched our hearts in a very special way but she touched yours as well. God knew we needed her to bring His light, His joy and most of all, His love in a very unique, sweet package. She did just that and I’m ever grateful that He loves Barney and I that much to give us such an honor to be her earthly parents. What a gift!

Brent Nason is improving with his treatment and if my lame brain serves me correctly, he is doing radiation for the new spots in his face. Great news … his bone marrow is CLEAR!! Oh how we love hearing that … God is in control with all these sweet babies and He reminds us in each task great or small. Please continue to remember Brent and his family as they face each day with smiles and His amazing grace. They are precious precious friends and we are standing with them as with the rest of our St Jude family … believing. www.caringbridge.org/ms/brentnason

Please remember Jacob Duckworth’s family in Florida as he earned his wings this week. I have followed them for some time and have grown to love them thru their faith via the website. If you would like to leave them a note, please feel free. You will certainly get a blessing from visiting his incredible website. www.caringbridge.org/fl/jacob

Please remember Eli and the youth group (especially the sponsors ha!) he is traveling with to South Texas on Friday. They are going on a mission trip for 9 – 10 days and are going to get to do some construction work for some folks who need them. They are also getting to have R & R time in South Padre Island on the last day before traveling home. I know that Eli is really excited and I pray this will be a learning and blessing experience for not only him but the entire group.

We love you all bunches and bunches. Thank you for continuing to remember our family as we continue to put the pieces of our lives back together. No one ever said this would be easy and I don’t expect anyone will. Our prayer is that God leads each and every step so we can follow what He wants, not what we want for our lives. If I’ve learned nothing more in the past almost 4 yrs … this is not about me, it’s ALL about Him. We are every grateful for you and pray that God showers you with His Sonshine!

(got a little long winded eh?? Love ya’ll!)

Only By His Grace - Trish

Tuesday, June 6, 2006 9:17 AM CDT

Good Morning Sweet Ones …

I debated on attempting a journal today but as you can imagine my heart and mind are overflowing with many mixed emotions … so bear with me.

First and foremost, you all amaze me … did I say amaze? I meant AMAZE me!!! You cannot know how your encouragement is beyond uplifting. Thank you for continuing to love. It struck me once again today, like it does so very many times, that we, Emma Grace’s immediate family, are not the only ones who enjoyed her sweet life and continue facing days without her. You, our extended family, are feeling the loss right along with us. And that my dear ones, is nothing more than God using Emma Grace to let His light touch the so many lives during her short 4 yrs and 9 months. And knowing how much she blessed and touched my life is truly undescribable but I can tell you … my heart smiles!!

In getting ready for work this morning, I couldn’t help but think that in all the battles she fought along the way she had more grit and determination than most adults I know could have. And she fought with joy & laughter. But to her, cancer was just a part of her life and she faced it like a common cold to us. And best of all, SHE WON! She’s better than all of us but knowing that one day we will ultimately win this life’s battle. Oh what a day that will be! But in the meantime, God’s got work for us to do.

Thank you again for being such God sends to us. He certainly knew that we needed an extended family life you. We love you and May His Sonshine Surround You!!

Only By His Grace - Trish

Thursday, June 2nd, 2006 3:14 PM CDT

A quick note for couple of prayer requests ...

Marianna Traylor, my boss and dear friend, was taken by ambulance to WRMC this morning about 4 for severe abdominal pain and vomiting. I just talked to Mike a bit ago who said from the tests they believe she has viral colonitis. She is resting comfortably finally and will probably have to stay a couple of days.

Also, one of our driver's wife, Patty Schlesener is in the hospital as she has had a stroke. Patty and I went to school in Farmington together (many moons ago) and I think she is 2 yrs older than me. The doctors told them the MRI shows that she has suffered from 5 strokes. She may possibly get out of hospital on Friday or Saturday.

Please remember these sweet ladies in your prayers as God comforts and heals them.

Thank you all for the compassionate and caring emails as well as guestbook entries concerning Emma Grace's Angel Wing Anniversary. Several have asked if we are doing anything in her honor and due to her love (and ours) of the balloon lift off, I think that is best fitting for her. It's hard to believe it has been a year ... at times it seems like 20 but yet the memory is vivid like yesterday.

For those of you who would like to join us, we'll meet at the Angel Garden in Prairie Grove, at 7 pm.

Thank you for your love, concern and especially your prayers. You all are truly gifts from God and we are ever grateful for you!

SATURDAY, MAY 27TH UPDATE:
Hello to All! We trust you are having an enjoyable and safe Memorial Day Weekend. It sure is nice to have 3 days off, eh??

First, I've just got to say, thank you so much for your faithful prayers for Jake. Today, he appears to be having a much smoother time. We know all too well how the ICU hours can be and you certainly can't tell between night and day. Don and Staci are amazing! It was so good to talk to them for a bit as well as Mo. We're all standing with you, praying and believing. God certainly has Mr. Jake wrapped in His loving arms letting his body rest and heal for the time being. Can you think of more loving Arms to be in?? I sure can't. Sheltered in the Arms of Love ... beautiful image, eh?

Things have been pretty busy around the homefront but that's ok, we're doing great ... Eli is counting the hours now until he's out of school. The 31st is his last day and I'll be I can hear the war hoop all the way at Traylor's when the final bell rings.

Eli & I went to the Angel Garden yesterday and placed some purple rose & pink hydrengas and white daisies at Sissy's stone. The Angel Garden is a beautiful location anyway but with all the decorations ... it is breathtaking. We decided Emma Grace's love for birds has become a bittersweet undertaking since the birds LOVE to hang out on her headstone. You can only imagine how 'accented' that black stone gets. So, we went back early this evening and gave it a good wash job. I give it 3 days before the birds strike again. Oh well, I'm sure Emma Grace is pleased they love hangin out there.

My niece, Danielle and daughter Cadence were in a car accident on Thursday while headed to Owasso. Danielle looked back to tend to Cadence in the back seat to turn around and find herself in the median, crossed the two lanes of oncoming traffic and flipped her car landing on its top. Thankfully, both of them are doing ok ... both were securely buckled. Danielle said she is bunged and bruised but other than that they are fine. God was surely placing extra protection from start to finish of the accident. I recall how busy Hwy 169 is and I'm so thankful they are only banged and bruised. I wonder if God allowed my Angel sister Dianne and Angel Emma Grace to help protect them?? It is a lovely thought one of which I've had many, many times with Dianne mother-henning Emma Grace. Please keep then in your prayers as they continue to heal and also, praises for His incredible protection.

Well, I need to call it a night ... it's been a looooonnnnngggg day. whew! I just heard my nightgown calling. Ha!

Thank you for continuing to pray for Sweet Jake and family as they continue in their fight. Please say an extra prayer for Staci, Don and the rest of the Raborn crew who are camped out for the long haul as they have the overwhelming job of patiently waiting while Sweet Jake 'sleeps'.

Also, please remember Christal as she has been unusually withdrawn lately. She most certainly has every right to feel whatever she needs to feel. Lord willing, I'm getting to hop a jet to Florida next weekend for a LONG LONG overdue visit. Needless to say, I can't wait ... I'm counting the days and from Chris' phone calls, she is as well! Whoo Hooo!!

I have a very special unspoken request ... you know how I'd rather give you a specific target but God knows all about it and that's really all that matters.

Also, say an extra prayer for Eli that he applies himself for his final testing on Tuesday and Wednesday ... we're scrappin by on the skin of our teeth. But he has been doign better these past four weeks so the proof will be in the puddin. (ha)

We love you bunches and are ever thankful for your prayers, love and most of all, your unconditional friendships! You are the best. May His Sonshine surround you today and always.

Only By His Grace - Trish & Eli

Tuesday, May 23, 2006 11:17 PM CDT

Prayers, prayers, PRAYERS needed for Sweet Jake Raborn. The docs placed him on a vent earlier this morning and he received granulocytes around 9:30 tonite. This is very critical in trying to combat infection as well as boost his immune system. Bottom line (as I'm certain I'm not going to relay this correctly) our little buddy is very sick and needs our prayers. Please visit his website for the full (accurate) details and feel free to leave a note just to let them know we're all praying and believing right along with them. Thank you for always being on guard to lift these sweet babes and their families in prayer! We love you!! Trish
www.caringbridge.org/la/jakeowen

Earlier Tuesday, May 23rd:
THANK YOU LORD!! Mom's stress echo was completely clear ... no blockages!! Thank you for your prayers! We love you more than words will ever say. Have a blessed day!!

Last Friday's update:
Just a quick note to thank everyone for your faithful prayers …
Mom was released from hospital yesterday and the doctors feel she did not have a heartattack. THANK YOU LORD!! She is having a stress echo on Monday to confirm all is well. She has been overdoing it lately and they felt that may be the culprit. Thank you for your prayers … yes, God is in control and has everything handled long before we know it.

Also, Christal had her surgery yesterday as when she woke up things were ‘not good’ as Chris told me. The surgery went very well and they replaced the shunt. Please continue to remember Christal as she is having some very serious “life talks” with her family right now. Especially, please remember Chris & the Crew as they handle such mature, serious talks from a child who is wise beyond her years. We don’t know what God has in store for Christal but God does and we are trusting Him fully to wrap this family up in His love for whatever lies ahead. I know they would love to hear from you http://christalinfo.servemp3.com

Have a blessed day and again … we are ever grateful for you. God is so loving to send true prayer warriors and especially, dear friends who stand by us and lift us up unconditionally. May His Sonshine surround you!!

Only By His Grace – Trish

Thursday update
Hello Sweet Crew ... A couple of prayer requests

Just a quick note as I have not been able to make necessary calls ... so apologies up front.

My mom, aka Nanna, had an "episode" as she calls it with her heart yesterday evening. I came over and took her to our local EMS to have her blood pressure run, etc. Long and short of it is, they took her by ambulance to the hospital as her chest pain was still present. The ER doc ran all the necessary tests and they are not sure if she had a heartattack as all tests are looking good but she had had a nitro med and that fuzzs up the picture sometimes. They kept her in the cardiac unit last night and are running a stress test this morning. Needless to say, Mom needs our prayers and I'm thanking you in advance for your wonderful faithfulness. It is such a comfort to know that we can come to our friends and they truly take it straight to God. Thank you!

Also, our sweet Christal is scheduled to have surgery on Friday. Chris told me yesterday that right now it is scheduled for 1:30pm but could be moved up earlier. Please remember Christal, Chris, Drewie, Lois, Kylie & Todd as our sweet girl endures yet another surgery. Also, for the neurosurgeons and staff to be lead EXACTLY as God leads them in the OR.

We love you all so much and are ever grateful for you love and friendship, most of all, your faithful prayers not only for our family but our extended families and our St Jude families who continue their fight.

Only By His Grace - Trish

Saturday, May 13, 2006 11:51 PM CDT

This is the update on Christal's website from Drew. In talking with Chris today, Christal has tested postive for "gram rod negative" bateria in her bloodstream. This is a difficult infection to combat. The shunt is going to be replaced but at this point that has not been scheduled due to the infection. Thank you for lifting Christal & family up in your prayers. We love you! Trish

Update on Christal. She has a bacterial infection in her blood, some sort of blood infection. She is going to be on antibiotics for approximately 10 days. They also saw Dr. Trumble and her shunt isn't working properly all around, so they are going to be doing a shunt revision, likely having to do something with both parts, the one in her head and the line going to her stomach that they've already replaced recently. Have to do it all though because of the infection. Anyway, the long and short of it is that it'll have to be done after the bacterial infection goes away in her blood system, so they could be looking at anywhere from 5-7 more days in the hospital yet. Not exactly what anyone wanted to hear. More updates as I get them. Drew

First of all, Happy Mother's Day to all you sweet, sweet Mothers!!

I have some very special prayer requests ...

In talking to Chris this week, Christal has had the stomach bug last week (as well as the rest of the fam) and doesn't seem to be bouncing back as she should. She has lost 5-6 lbs and has stayed pretty puny. Her strength is very weak and in talking to St Jude they also felt she should have recovered by now. Bottom line, they are headed to Christal's pediatrician this morning and have a CT scheduled. Please pray that nothing is more problematic with the CT - nothing new is discovered. In talking with Chris this morning, she's scared and justifiably so. But as she said in her journal, God is in control and don't we know it! Please pray for Christal and her sweet family as they face their morning of trying to discover what the culprit is. I know they would love to hear from you if you get a chance.
http://christalinfo.servemp3.com

Also, I received an email from Vicki, Sarah Starks mother. We lived with them at RMH in 2003. You may recall Sarah was a teenager who was given a very poor prognosis with a rare brain tumor. God delivered her in 2003 and she has been in remission much to the delight and surprise to her Medical Team. They have remained faithful and continue to do so, giving God all the glory for each step along the way. In Vicki's email this week, Sarah does have recurrence and is facing a "grave" situation as her mother put it. They plan to do radiation in very high doses but it is critical as to the locations of the tumors in her spine. Please pray for sweet Sarah & her mom Vicki as they face the decisions God leads them to. Sarah is now 19 and has much of the decisions on her plate. Again, God is faithful, in control and He is there. This sweet family believes that to the fullest and we stand with them in prayer for God to carry them through.

Please continue to remember sweet little Jake man ... he is still battling the stomach pain from GVHD, still running fevers - low grade now, thank you Lord - and is now finished with radiation. YEE HAW!! We're praying things will start to ease on this sweet little man and his dear family. It is so hard to confined to the hospital not to mention in your room constantly. Please give them a boost of encouragement if you get a chance. They love to hear we're praying. www.caringbridge.org/la/jakeowen.

You all are incredible and we thank you for your continued prayers for all our sweet friends who continue in their fight against this horrid disease. Also, please remember the families who are spending Mother's Day without their sweet angels. God is faithful to give each and everyone of us - no matter what type of our struggles we all face - the strength to face each day ... holding our hands, leading the way. When the day seems to cover with dark clouds, keep looking up ... He's right there. Thank you Lord!

Only By His Grace - Trish

Monday, May 1, 2006 2:26 PM CDT

So did you think I musta went on some sort of hiatus or something?? (spell???) I really have been slipping, eh?? (Thank you, Mr. Jeff, for no well-deserved 'git r dones') Obviously, he's been WAY too busy anyway with the new construction and all ...

As I have mentioned several times in the past - we (AS IN "ME"), have not been very diligent about taking care of ourselves. We completely focused on Emma Grace and that's where our focus stayed for 3 1/2 years. Needless to say, I collected an abundance of "extra poundage". For those of you who are much younger than me, when you're hearing how hard it is to get weigh off as you get older LISTEN. Oh my word!! Lemme tell when you hit "40 yrs plus", it's like pullin hens teeth to drop the pounds. Poor Eli waits by the window, phone in hand when I go out walking just to make sure he doesn't need to call EMS. You got that part right (and read between the lines), 'waits INSIDE the COOL house, sitting on a COMFY couch, peakin at the window with one eye and the other on TV'!! HAHAHAHA

Anyway ... the Hampton Crew is doing good. We had a really good weekend and got some MUCH needed rain this past week - looking forward to more this week. Barney has been staying busy on the road, Eli is SOOOOO ready for school to be out but has been hanging in there pretty good and improving grades. All the kids get quite restless with summer approaching so nothing surprises me at this point. As for me, well, I'm doing pretty well. I always say 'some days are just better than others' and that is certainly the truth. I probably feel better spiritually, mentally & physically than I have in months & months. There's only one reason and it's God. We have said it before and we all hear over, over and over again how He is always there to catch us when we fall, lift us up, even carry us if we need it or just stay with us until we're ready. No matter ... He truly IS always right there. Thank you Lord.

A couple of prayer requests:
Jamie, daughter of Rocky (one of our drivers at Traylor's), has multiple blood clots on her brain. The tests last week revealed that she also has a tumor - unknown at this point. The doctors are needing to do surgery but the prognosis is not favorable with or without surgery. She is 36 y/o with two teenage children and husband who all need our prayers. God already has it figured out.

Also, Marianna's dad, Sonny Sellers had surgery almost 4 wks ago and is still having problems with infection. They are going back to the surgeon today to determine what the problem is. They have been staying in Oklahoma City since the surgery and I know they are getting weary to come home not to mention, Sonny is not healing like he should be 4 wks post surgery.

LET'S HAVE SOME PRAISES ...
Brent Nason's MRI today revealed NO NEW GROWTH!!! Dr. Spunt felt the pain he has been experiencing is from the tumor dying!!! He felt is was dying from the 'inside / out' which has been putting pressure on Brent's spine. What BLESSED BLESSED NEWS!!! I know his sweet family would love to hear from you. www.caringbridge.org/ms/brentnason

Sarah Claire did really well with her surgery, got out of hospital Saturday and they all survived the 18 day hospital stay and she went back to school today!! How about that for answers to prayer???

Little Jake seems to be inching his way to recovery. Please continue to lift him in prayer as his body has been through so much. Also, please lift Staci & Don ... they are so incredible and I know so ready for Jake to get back in high gear. www.caringbridge.org/la/jakeowen

Thank you so much for your continued prayers, support and most of all, your love. You can never, NEVER know how we treasure you all ... you're absolutely precious gifts from God.

Only By His Grace - Trish

Tuesday, April 18, 2006 9:18 AM CDT

Good Tuesday Morning to All!

Hope everyone’s Easter was filled with God’s blessings. He is Risen! And oh, what an ultimate price was paid just for us. Thank you Lord!

We had a great weekend spending some much needed family time together. The weather was gorgeous, the dogwoods are filling the hillside in their statements of glory – it was just a nice weekend. Of course, we missed Emma Grace not spending Easter with us but I just imagine she was helping the angels sing Hallelujahs of Christ’s resurrection as His heart smiles with pleasure.

In the midst of being wrapped up in our “ditches of grief”, it’s really overwhelming and we can sometimes overlook who and what is really important in our lives. It’s certainly not intentional, but sadly, it happens. The past three weeks have really been a time for me, personally, to re-evaluate who and what is truly important, thankful for the blessings God continues to bring and taking each day one step at a time (sometimes it’s every 15 mins at a time, right Mimi?). I am finally learning that not everyone grieves the same – there’s no set time frame or standard that everyone should go by. (Although, it sure would be nice to have such.) Bottom line – today, is all we’ve been given and though some days are better than others, today is my choice to make it count. I find myself worrying about tomorrow but God keeps reminding me, He’s already there. There’s a great line in Ginny Owens song “If You Want Me To” that says, “This may not be the way I would have chosen, when You lead me thru a world that’s not my home. But You never said it would be easy, You only said I’d never go alone.” This seems to be the same point He keeps making over and over again. He’s there, no matter what gets in our way, He’s there.

Have I woke up one morning and decided ‘everything’s ok now’?? Nope, but I can say that I am trying to fit some very important pieces of my life back together. And it’s only by God’s grace and mercy. He is there, we only have to ask.

In closing, please continue to remember sweet Jake who is inching his way toward feeling better. He is still having serious tummy issues which need our prayer. Please drop them a note if you get a chance. I KNOW Staci and the crew would love to hear some encouragement as they are getting worn for obvious reasons. I believe Don had to go back to work which Barney & I know from experience how heart wrenching that is. Please say and extra prayer for Don as well. www.caringbridge.org/la/jakeowen

Sarah Claire is on target for shunt surgery early next week unless something changes. They are going to redirect her shunt into a main vein. Please pray the infection continues to subside and all will go as scheduled.

Also, please pray for safety for Barney as he travels the roads. Also, I know the miles and miles of 'windshield time' sometimes can be overwhelming.

Thank you for your continued prayers. You all are precious. We love you all more than you’ll ever know. Keep looking up with us … sometimes clouds get in the way but the Son is always shining.

Only By His Grace – Trish

I LOVE this by Max Lucado in Grace for the Moment II – This is an excerpt from his book “Cure for the Common Life”. What great encouragement we all need to hear …

“There’s only one You”
From the place of His dwelling He looks on all the inhabitants of the earth; He fashions their hearts individually. Psalm 33:14-15

You are the only one God made.
He made you and broke the mold … Every single baby is a brand-new idea from the mind of God.
No one can duplicate your life. Scan history for your replica; you won’t find it. God tailor-made you. He “personally formed and made each one” (Isaiah 43:7). No box of “backup yous” sits in God’s workshop. You aren’t one of many bricks in the mason’s pile or one of a dozen bolts in the mechanic’s drawer. You are it! And if you aren’t you, we don’t get you. The world misses out.
You are heaven’s Halley’s comet; we have one shot at seeing you shine.

Thursday, April 13, 2006 9:45 PM CDT

Just a quick note of updates ...

Jake Jake came thru surgery FABULOUSLY!!! Thank you Lord!! If I understand correctly, the tumor presented itself without much prodding to get to it. Don't cha just love it when God is ALL over the situation?!?!? Please continue to keep them in your prayers.

Sarah Claire has surgery today which they removed a small portion of her tubing from the shunt. Sharyn said the doctors were able to tap her shunt also removing about 30cc of fluid. The testing is being done to make sure no infection had traveled the tubing to the shunt. They think she may have a urinary tract infection causing the problems. The doctors estimate she will be in the hospital for 7-14 days. Please pray no infection has infiltrated the shunt.

I talked to my nephew Joey today who said that Shelbi's surgery went better than expected. They were going to release her around 7 pm this evening.

Thank you Lord for Your blessings on our friends and family today!

We appreciate your faithful prayers, friendship and especially your love.

Have a blessed Easter!

Only By His Grace - Trish

Wednesday, April 12, 2006 10:29 AM CDT

TRIPLE DUTY PRAYER TIME!
Ok...so Jake is also having surgery Thursday morning to remove the tumor in the front of the brain which appears to be golf ball size. The docs felt its best to get it out now because of its location.

Mimi Sharyn called at 8:15pm tonite to say they are safe in Jackson and Sarah Claire should have surgery in the morning. Thank you for keeping those prayers rolling for our Sarah Claire!

Also, my neice, Shelbi is having her heart procedure tomorrow.

Ok prayer warriors...we've got our hands full but you know what? God doesn't ... He's already there, at large and in charge! Thank you so much and we love you bunches!

PRAYER REQUEST UPDATE 6 PM: Mimi Sharyn called me around 5pm to say they are on their way to Jackson, MS via ambulance as the doctors think Sarah Claire's appendix may have ruptured. Also, the absess appears to be along the line which runs from her shunt (in her head) and if the shunt is involved, they want her in Jackson with the neurosurgeon. Please lift this sweet family in prayer and we'll keep you posted. We love you!

Ok ... for days I have started an update - when you sit down and the words won't come because they're circling fast in your head like planes trying to land in LA, it's time to concede that today's just not the day.

I'm not promising to get "landing clearance" for the words to come but this would be my attempt.

First and foremost - Jake, oh sweet Jake, he so needs our constant prayers. I won't even attempt to go into everything because I'll get it all misrelayed but he is in the hospital again, has MORE brain tumors which are being addressed as we speak. Bless his sweet heart and his dear family. And yet, they are incredibly strong. We all know Who is giving them their amazing strength. As hair-raising as everything seems, God is taking care of the known and the unknown. PERIOD. Please continue to pray for Jake, his sweet family and especially, the doctors who are working thru the details to get Jake yet another gameplan. I know they would love to hear from you if you get a chance to drop them a note of encouragement. www.caringbridge.org/la/jakeowen

Also, my sweet nephew's wife, Shelbi, is having a procedure Thursday that I would ask for your prayers. She has a heart condition that recently has gotten to be problematic. Shelbi is in her early 30's. If I begin to recall exactly what it's called, I'll flubb it up so let's don't even go there. Her heart has been very irregular and even races with beats for several months which she has been on medication for. She passed out last Saturday morning in the shower warranting a visit via ambulance to the hospital. Thankfully, Jimmy was home (who is a Tulsa Firefighter) and the boys were staying at Shelbi's parents. (Shelbi's REALLY thankful Jimmy was able to get her fully dressed before paramedics arrived - for those who know our Shelbi know what serious consequences Jimmy knew he would be in had he not! ha Way to go, JimBo) When they arrived in the ER, the meds they were giving Shelbi was complicating matters. Would you believe that one of Tulsa's top cardiologists was outside Shelbi's room - in street clothes mind you, while this was escalating. He took over her situation and started chirpin orders for a complete different condition that had been overlooked?? Of course, and then again some would say, 'that's odd', Nope, that's God. He diagnosed Shelbi with an additional condition and they are doing the procedure tomorrow to hopefully, rectify her problem. Please be in prayer for her as she has this completed, for her medical team and especially, Jimmy and their 4 precious boys who are obviously concerned with Mommy.

Last weekend was wonderful yet heartbreaking. What a beautiful tribute to all our sweet Angels who have been the brave little hearts in their incredible battles. It was so good to spend time with the Haynes and Mimi Sharyn who drove in Friday night. We had dinner with Nancy, Bobby, the Haynes' and Sarah & David Friday night which was wonderful. It sometimes still seems quite surreal the reason we were even brought together much less the fact our sweet ones are no longer with us. We saw many of our dear friends who we have met along the way, including the precious nurses, doctors and staff who always continue to encourage us. We made it home Saturday evening as I was sapped and ready to come home. I had to smile at the thought of numerous pacis bobbing down the Mississippi River and the sweet laughter of Stanton & Emma Grace jubilient in their triumph of Emma Grace being "paci free". Besides, it was just FUN throwing stuff in the river!

Thank you for your continued prayers for our family as well as the many other families who continue to adhere to life after cancer. The adjustments are endless and I'm not sure the hurt will likely never end but I'm faithful that God will continue to heal us so we can learn to live with it. And that's were I'm at ... trying to heal. I can say that 3 weeks ago I truly wasn't 'trying' to do anything. God is gracious and thankfully, patient. I feel that when we hurt, He hurts and Who more to know our pain. He's been there, He knows. And to think He purposely placed His Son to take an horrid, ugly cross that would allow us an eternity. What a price He paid ... and all for us. That's how much He loves us.

We love you all and we thank God always for you. May His Sonshine surround you this weekend and always.

Only by His Grace - Trish

"I am the Lord, there is no other God." Isaiah 45:18

Thursday, April 6, 2006 8:34 AM CDT

Just a quick note ...

#1 HALLELUJAH! Jake is OUT of the hospital and doing better. What a ride this sweet family is on and so humbly take each step knowing God is in control. Please continue to lift them in prayer. www.caringbridge.org/la/jakeowen

Brent Nason is having an MRI and bone scans today required to start a new chemo. Please pray all is stable and nothing new in their path so they can forge on with his treatment. www.caringbridge.org/ms/brentnason

Thank you for your continued prayers for us. God is carrying us with His precious love. Also, please remember us as we travel to St Jude Friday for Day of Rememberance. You all know how I look forward to being in Memphis and it will be such a blessing to see so many of our families that we have traveled this journey with. Tina has already contacted the hotel to get us adjoining rooms (ha). We are playing it by ear whether to come in on Saturday or Sunday. Please pray for everyone's safe travels, this weekend to be in honor of our sweet angels and especially, a healing time for all.

We love you and thank you always for your precious love, friendship and especially your continued prayers.

Only By His Grace - Trish

"The Spirit produces the fruit of love, joy, peace and patience." Galatians 5:22

Saturday, April 1, 2006 7:07 AM CST

Good Morning Sweet Ones ...

First and foremost, PRAISES to God for Jake's successful surgery AND PRAYERS as Jake is now back in the hospital with swelling, blood pressure and heart rate issues. This sweet family, oh my, have they been on the emotional rollercoaster! My heart aches for them so we're just praying. Jake is one mighty little man with a Mightier God who is carrying him and his precious family. Thank you for your continued prayers for his healing. www.caringbridge.org/la/jakeowen

Secondly, I want to share with you something I have been reading since the wee hours this morning. The below really spoke to my heart and God knew this is just what I needed to hear today. I want to preface this by saying, our family continues to need your prayers please as you so preciously faithful to do. Thank you! I know it's always good to have specific prayer requests but I'm just asking that you trust Him to take care of these specific details. God knows ... if anyone does, it's certainly Him. God has everything worked out ... I trust and believe that but most of all, I believe Him. Reiterating and quoting Max Lucado in past entries, "God never said the journey would be easy but He did promise the arrival would be worthwhile." In God speaking to my heart this morning, in every place that Mr. Lucado has written "you", I replaced with "Trish". So that's the way I'm sharing it ... just like He spoke these words to me. Isn't God is so amazing?? He can heal broken hearts ... for some (like me) it may take longer but He's right there, reminding me Who is in control. Thank you Lord ... I need your still, gentle voice to comfort me always.

From "Grace for the Moment" by Max Lucado:
"Praise the Lord, God our Savior, who helps us everyday." Psalms 68:19

"Perhaps the heaviest burden we try to carry is the burden of mistakes and failures. What do you (Trish) do with your failures?
Even if you've fallen,(Trish), even if you've failed,(Trish), even if everyone else has rejected you,(Trish) Christ will not turn away from you, (Trish). He came first and foremost to those who have no hope. He goes to those no one else would go to and say's "I'll give you, (Trish), eternity."
Only you (Trish) can surrender your concerns to the Father. No one else can take away those and give them to God. Only you, (Trish), can cast all your anxieties on the One who cares for you, (Trish). What better way to start the day than by laying your cares, (Trish), at His feet?"

Whew ... thank you Lord.

Please remember all our sweet friends who are still in the fight. Especially, please remember Brent Nason is awaiting platelet counts to rise so he can start another round of chemo. And our sweet Christal, as she is delighting in each and every day. What a precious little darling she is.

Thank you again for your love, compassion, friendship and most of all, your prayers. We love you more than this print will ever relay. God knows and I trust He makes your heart smile with His love we have for you.

Only by His Grace - Trish

So here's a pep rally for all of us...

"God is for You" also by Max Lucado in "Everyday Blessings":

God is the strength of my heart. Psalm 73:26

God is for you. Turn to the sidelines; that's God cheering for you to run. Look past the finish line; that's God applauding your steps. Listen for Him in the bleachers, shouting your name. Too tired to continue? He'll carry you. Too discouraged to fight? He's picking you up. God is for you.

Monday, March 27, 2006 6:08 AM CST

CALLING ALL PRAYER WARRIORS!!

Our little Jake Raborn is having surgery today to remove 2 brain tumors. Please PRAY PRAY PRAY for Jake, his sweet family, the neurosurgeon, the nurses .... let's cover all the bases for this to be a complete success for our little man's healing! Jake's addy is www.caringbridge.org/la/jakeowen

Who's in control?!?! GOD'S IN CONTROL!!! He's got this already taken care of.

We love you and thank you for your faithful prayers!

Only By His Grace - Trish

Tuesday, March 21, 2006 11:52 AM CST

Just a quick note of some important 'stuff' ....

Please pray for Little Mr. Jake's scans on Wednesday. God is there, knows ALL about it and we're just holding to His hand as He takes care of our little buddy. If you get a chance, please drop a note of encouragement to our sweet Raborn crew. www.caringbridge.org/la/jakeowen

Also, please pray for Brent Nason as his scans did not come back as favorable as we had hoped last week. The great news is his bone marrow is CLEAR!! Thank you Lord!!
I believe they are starting another chemo so please lift this sweet family up as well. www.caringbridge.org/ms/brentnason

Things are ok on the Hampton homefront ... as always we appreciate your continued prayers. I know I say this all the time and I sure don't wish to sound like a broken record but everyday is a challenge since our baby girl went Home. Missing her just makes the 'everyday' problems, trials and worries more excelerated. Please continue to pray for peace and strength. April 7 - 8 is St Jude Day of Remembrance for all the sweet Angels who have gone Home. We're praying already for that weekend as I'm quite sure as wonderful as St Jude will be to us, it's all so incredibly unbelievable the reason we're going to be there.

Having Ms Rita here last weekend was just marvelous. We had such a good visit and it was so good to spend some time with her. Eli had a blast with her here.

We love you all so and are ever thankful God has blessed us with you. Thank you again for your love and friendship!

Only By His Grace- Trish

Friday, March 17, 2006 6:44 PM CST

Happy St Patty's Day to All!

Ok, so it's been two weeks since my last update. Thanks Barney for taking care of it last week.

It has been a WILD week!! We started last Sunday night with several tornadoes just north of us. There were alot of homes damaged as well as poultry farms. The company I work for hauls shaving and rice hulls to the poultry farms for bedding when they are getting a new flock. Needless to say, with the many farms that were damaged it was a wild week of rearranging schedules to accommodate the companies who were moving flocks to different farms due to the damaged houses. If you think I had gray hair before, well, it just got highlighted some more. Just another day at the office ... it certainly has not been boring that's for sure. But it never is.

I'm going to make this pretty brief as one of our dear sedation nurses, Ms Rita, is due to arrive at the Hampton House in about 30 minutes. She called this afternoon to say she was NW Arkansas BOUND!!! And we are THRILLED she is coming to stay the weekend! Please keep Rita in your prayers as she has had a eventful week. I will update you more as I get the full scoop this weekend. But God knows all about it and is already taking care of her concerns.

We trust this update finds everyone well and looking forward to a weekend filled with God's Sonshine. Please continue to pray for our sweet St Jude buddies who are in the fight. We love you all and thank God for you always!

Only By His Grace - Trish

Sunday, March 12, 2006 7:54 AM CST

Okay this may be shorter than normal since I am going to attempt to this today. It has been a long time since I have attempted an update. There are so many memories flying thru my mind as I set here trying to type this that it is difficult to even know where to begin. I can see Emma Grace, being the little commander that she loved to be, giving orders to any one who past thru her world. The first week we were home in July of 2003, Eli was doing the dishes and had a cast iron skillet to dry. We always dry the cast skillet on top of the stove over high heat. Emma Grace walked thru and noticed that the burner was on and proceeded to inform everyone in a loud voice that Bubba knew better than to have the stove turned on. That being said she proceeded to reach across the top of the stove and turn the burner off laying her hand on top of a very hot burner, earning a fast trip to the ER. While on the way to the ER Trish calls our pediatricians at home. We had been given pager numbers, home numbers, and cell phone numbers for Dr. Perez and Dr. Muriel, so we had 24 hour access to our Doctors when we were home-home. Dr. Perez met us at the ER checked Emma Grace’s hand, applied salve on the burn, and then proceeded to let Trish know that she was to never to call Him and ask if he was on call. His comment was “I am on call 24/7 when it comes to this baby; don’t ever ask again if I am on call I will always be here for her when she needs me.” He was very polite but he made a point that was never forgotten. All the way home the only thing Emma Grace could talk about was not how she had made a mistake but how Bubba should have known better than to have turned the stove on. She informed him when she saw him that it was his entire fault her hand was burned making him feel worse than he already did. She was always in control of her world, and the things around her.

I would like to think everyone for the concern and prayers for me. The doctors have never figured out what caused my blood pressure to drop. They said that we may never know what caused it; just keep an eye on it. I now am ask every day what my blood sugar and my blood pressure is. Everything is doing well. Trish is keeping a log on her blood pressure so the doctors can adjust her meds as needed.

Please continue to pray for all of our St. Jude families and friends. Jake is doing good after transplant (you can not keep a good man down.) way to go Jake. Christal, Brent, Chris, Madelyn, and Ben, all continue to fight the beast daily so please say extra prayers for them.

GOD IS GOOD, ALL THE TIME
Angel Emma Graces Daddy

Friday, March 3, 2006 9:38 AM CST

Ya think I'm on a Friday rotation with this journalling????

Well now, when sweet Mrs. Fay from Bastop, LA tells me it time to change the entry because "the ice is gone and the mosquitos are out and the frogs are a'croakin" - well, it is certainly time to update.

She's right - our weather has went from snow & ice one week to record breaking temps. We were at 86 on Wednesday. That's pretty strange weather even for our neck of the woods.

The week has been busy which has been good. Barney has been back on the road since Monday afternoon. He had his routine diabetes check up and didn't get out on the road until after 4 pm. So, he really had to roll wheels and blow smoke to catch up. His appointments went really well. His diabetes seems to be under control. He's had a 'back & forth' week and actually spent the night in Siloam on Wed which is only 20 miles from the house. It was nice to know he was 'close to home' even if for a little bit. He has been running the Lousiannas this week and even got a break to stop by Kristy Leick's home Thursday night. Barney said he had a great visit with them. I think they spoiled him with dinner and sweet fellowship. We lived with Kristy and family at the RMH when Emma Grace was first diagnosed so we have been friends with them from 'the start'. Kristy is doing very well and I believe Barney said they go back the The Jude for checkups again in March. Thanks Chris & Crew for the hospitality and spoiling Barney with a home cooked meal while he's on the road!

There have been several emails and guestbook questions about seeing the recent St Jude program "Fight for Life" starring our sweet Ali. Yes, that is 'our' Ali. I have yet to see it but have heard from many what a wonderful story she and Nancy shared. When we first met Ali she was being followed by the St Jude camera crew and let me tell you, she was so perfect and right at home in front of the camera. Thank you for your many sweet messages about her story. As you can tell, she touched many lives just like she blessed ours.

My trip to Memphis was wonderful and just what I needed. There is such a comfort being back 'home' and it doesn't matter where I go, Emma Grace is there - especially in Memphis. I got the opportunity to go see our sweet Raborn crew and how wonderful to get to hug their necks. Little Jake Man was still sleeping sound but nothing would do that I go sneak some kisses on his head in before I left. He stirred a bit only to close his eyes and 'play possom'. I wouldn't expect anything else from that sweet boy, he loves to tease. This was my first trip back to the Target House which I wasn't even considering being as difficult as it was ... I just wanted to see our Raborn's. Leaving them was another story. I just don't think I handled it as well as I should have. I HATE with a passion that they are having to be there again and go through even more treatments with Jake. And on the other hand, I am VERY thankful. This is not the category of 'perfect life' we would have chosen for any of us but I'm ever grateful Jake is doing so well and has the marvelous Team at St Jude to be following God's Hand to get this sweet boy cured!!

The weekend ended perfectly - Ali's school, St George's was having their annual Ali Mills 5K and I was grateful to share in this. Ali's best friend, Elizabeth, opened the race with the sweetest, heartwarming speech. She even made sure to mention Ali's friend, Emma Grace and how they would be having such a wonderful time with this grand event. The golf cart was decorated in the hot pink feathers and glitter ... so Ali! Laura, Dr. Ray, Brooke, Donovan, Mrs. Jill and many many others ran to support this event. (My participation consisted of 'cheering'!) It was perfect weather and it was a overwhelming tribute to Ali and her fight. "Ali's Way" foundation continues with her fight and also, offering compassionate hearts to others who face this horrific battle. They will soon be starting their monthly trip to RMH to fix dinner for the families. Ali's spirit for life continues.

Please remember a sweet friend, Shaela Carter who is 7 (I believe). Her mother was sadly taken in an auto accident last weekend. Shaela and her family certainly needs our prayers.

Mrs. Patty Avritt from Cleveland, MS is doing much better. You'll recall she had the blood clot in her lung. They were able to control her condition with medication and she didn't have to have surgery. That's God at work!! She is out of hospital and even back to work. Thank you for your prayers for our sweet friend. Yes, God is good ... ALL the time!

You'll recall with Barney's recent episode of low blood pressure and the wild trip to the ER weekend before last. He continues to do fine and b/p back to his normal range. This won't be surprising but we needed a happy medium with our situations. I've been having just the opposite problem with my b/p. I went to the doc on Monday and she put me on some meds to try to get mine down and under control. Please say a prayer as the meds start to work and hopefully, get me lined out.

Ok, I'd better close for now. Thank you all for your countless, faithful prayers for not only our family but the many other families and sweet children who are in the battle of this beast. Please keep lifting Jake up in prayer as he gets another day out from transplant. Go German Cells GO!!! Please continue to remember Sweet Christal, Brent, Chris, Madelyn, Ben as they continue their days with smiles in their hearts. What true heroes they are!!

Only By His Grace - Trish

Friday, February 24, 2006 7:17 AM CST

It's Friday!! Glory be, Glory be!!

First ... I'm sure you've heard our Little Jake is OUT OF THE HOSPITAL!!! He is doing great. I talked to Staci last night and she said Jake had taken a 6 hr nap - WAY out of character for Jake but he's been thru quite a whoo-hah this week. Let's keep praying for the little German cells to march on and stop cancer in the biscuts as Emma Grace & Stanton would say!!! Thank you for keeping our sweet friends in your prayers ... you all are the bestest!

Everything is going okey-dokey at the Hampton house - the snow / ice just slowed us down on Monday but other than that it's been ok.

Barney has been feeling good with b/p's back to norm. Of course he's been trucking this week. Can't slow a good man down for too long. I've thought about last Friday night over and over which I am ever amazed at God's hand in getting Barney home. God is certainly so good.

Eli had a Valentine's dance last Friday night and judging from the sweat pouring from him when I picked him up that night AND the phone ringing endlessly this week - I'm guessing it went very well! (justa Momma's hunch) He's enjoyed being out of school for a couple of days this week but headed back on Wednesday just in time for benchmark testing. (ooohhhh...joy, bliss and happiness)

As for me ... well, I'm doing ... it's been another week of vivid remembrances of our babies. Last week with Stanton then Ali's birthday was Tuesday and her mom, Nancy's was Thursday. Of course, I have recounted every detail from last year what we did on both those days. Emma Grace colored Ali a picture which she signed of course and she wanted me to put "I love you Ali, you're my hero". Oh and what a precious hero she was and is to Emma Grace. Emma Grace was convinced the moon rose and set in Ali. One afternoon not long after Ali's birthday she wanted Emma Grace to come see her. We ended up spending all afternoon with Ali. Ali wasn't feeling the best by a long shot but was determined to enjoy time with her Emma Grace. She even watched "Strawberry Shortcake" with her - that's true love when you're 13. Ali wanted Emma Grace sitting right next to her and Emma Grace snuggled as close as she could short of getting in Ali's lap ... they held hands the entire time. Ali eventually got pretty tired and not wanting to give in to return to bed, the tears started to slowly roll. Emma Grace immediately noticed her sweet sister was not feeling good and without a second's hesitation, she wiped her tears with her precious little hand telling Ali, "It's awright, Awi, it's awright." Those two really never had to say a word - they understood from their hearts in their own perfect language. You think they are in perfect tune and harmony as we speak?? I imagine the streets of Heaven are more beautiful than ever.

I'm actually getting to go to Memphis this weekend. You may think it's strange but with the past two weeks of emotions, Memphis is therapeutic and I'm so looking forward to going. Barney & Eli are staying home as Barney was going to work until Saturday so we decided I would go solo. I think it's 'just what the doc ordered'.

Hope your weekend is filled with His Sonshine. Thank you for your continued prayers for all our friends who stay in the fight, fight, fight with all their might, Might, MIGHT!! We love you and thank God for you always!

Only by His Grace - Trish

Wednesday, February 22, 2006 5:51 AM CST

Little Mr. Jake received his stem cells around 1:30 this morning and all is well!! Thank you Lord! Jake's donor is from Germany so talk about God's incredible orchestration!! When I talked to Mo last night around 9 pm, their Penthouse Suite was ROCKIN!!! There is never a dull moment with this precious family.

Now that Jake has his "new stem cells" our specific prayer is they go in, set up housekeepin' and start kickin' cancer OUT THE DOOR!!! GO JAKER CELLS GO!!! I think the tell-tale of the cells working is when Jake starts asking for sauerkraut & weiners! (SMILE)

Thank you so much for prayers for Jake & his family. They are incredibly strong which we know is straight from God.

I apologize for the lack of update on Barney ... he is doing very well. Thank you Lord!! His blood pressure is back to normal and he is back on the road. (Is that any big surprise??) Thank you for your prayers for my dear hubby ... God is good ... you betcha!! ALL the time!

Love you and we're ever thankful for your love, friendship and faithful prayers!

Have a blessed day! Trish

Tuesday Nite Update:
Jake's Daddy Don shared this on Jake's website tonight ... Keep praying, Keep believing! Thanks Prayer Warriors! We love you!

FROM JAKE's WEBSITE: www.caringbridge.org/la/jakeowen

Tuesday Evening 7:00PM

The MRI did show a spot on his brain. The doctos say it is less than 1cm and not causing any problems. The docs say this spot can be resected with surgery. I'm not sure if or when a surgery will take place. Everything is literally changing by the hour.

The donor cells are on schedule and should arrive to St. Jude between 10:00 and 11:00. The transfusion should happen a couple hours after.

Keep checking the website as I'm sure updates will be coming through the night.

Keep the prayers coming.

BELIEVE,
Don

BIG PRAYER REQUEST FOR OUR LITTLE JAKE MAN!!!!

Jake is back inpatient with transplant scheduled for tonight at MIDNITE!! Today he is having full body radiation and an MRI.

Let's band our prayers together that all goes well for our little man. Who's in control??? God's in control and He knows ALL about Mr. Jake.

Thank you so much for lifting them in prayer. Feel free to drop them a line that we're on the prayer wagon with them. www.caringbridge.org/la/jakeowen

Only By His Grace - Trish

Saturday, February 18, 2006 6:21 PM CST

"Walkin' in the Winter Wonderland ..." And yes, it's snow!

Well, not so much 'walkin' as just trying to stay indoors, enjoy the snow from the windows and stay in the warm. Eli thought nothing else would do but to think of EVERY excuse under the sun to be outside. He's surely ALL boy!! It's only 18 degrees here today so the trips outside were brief to say the least.

We got about 4" of snow here at the house with the first round of precip being sleet and freezing rain which means that what's so pretty above is not so sweet on the base. The weatherman says we are likely to be getting more in the morning. We are in such drought conditions ANY type of precip is greatly appreciated.

Keeping with the 'never a dull moment at the Hampton House' would be an understatement for our wee hours. Barney came in off the road alittle after midnight, came in to tell me he was home and went to check the computer & get a bite to eat. The next thing I know he's hollering for help about 12:45. I ran into the hall to find him in the floor where he had previously passed out and fell. He said that he was extremely light headed and was somewhat nauseated. Since he's diabetic we're assuming that to be the culprit. His blood sugar was ok but his blood pressure was really low ... 88/61 to be exact. Needless to say, I was on the phone with 911 to get an ambulance on the way. Barney is hypertensive so we always expect blood pressures to be on the higher side, not low and certainly not this low.

Once paramedics arrived in the blinding snow (bless their hearts) Barney had started to feel better but his blood pressure was still low plus his O2 sats were low. They started an IV and off we went to Springdale. Now, being a marginal wintry weather driver I was a bit heevy-jeevy about driving 45 miles all the while worried about my hubby in the ambulance in front of me. I had to stop in Lincoln because my wipers were covered in ice and I couldn't see so well. The snow was blowing hard out of the NE which wasn't helping my driving ability. You've heard the song "Jesus, take the wheel"? Well, I never physically let go of it (DUH) but I fully surrendered to His keeping my tires in traction and most importantly, taking full control of Barney & his condition.

We all made it in tack to the hospital over an hour & half later, Barney's blood pressures had started to improve on the ride there but weren't normal. He looked much better when I followed him in and he was giving the paramedics a hard time - so I KNEW he was feeling some better.

They did the usual CBC, Chem 18, chest xray due to O2 sats - which also had improved - and a CT scan as Barney was complaining of a headache once we got to the hospital. The ER doc said he was uncertain what caused this episode but adjusted his blood pressure meds until Barney's b/p was more normal. They gave him a bolus of fluids and we slid back home around 6:30 am - this time with less snow blowing and light.

Please keep Barney in your prayers ... he's certainly feeling much better and his b/p has continued to improve throughout the day. We are so thankful God's timing is PERFECT - I shudder to think that this would have happened while Barney was on the road. THANK YOU LORD for getting him home!! He hadn't been in 30 minutes ... you think it's a coincidence??? NOPE ... that's God! Also, I've thanked God many times for getting the big red truck to Springdale because I AM CERTAIN I had NOTHING to do with that scary trip!! Once again, we are reminded of what's truly important to in our lives. Not that I feel we have lost that perspective by any means but there certainly is nothing more important than family.

Also, please continue to remember our sweet St Jude kiddos ... they are truly the heros in this world!

Only By His Grace - Trish

Wednesday, February 15, 2006 2:42 PM CST

Greetings Sweet Friends & Family!

My heart is loaded up with lots & lots & LOTS - some I will share at a later time and the rest I just ask for your prayers. God knows ... so thank you in advance for a prayer of faith knowing He will apply it directly where it needs to be.

In addition to the obvious of missing our Emma Grace every single second of the day, constantly 'our kids' cross my heart for prayer and I would give anything for their battles to be long behind them with nothing but blue skies ahead. Christal, Jake, Brent, Madelyn, Chris and the list goes on ... So we continue to pray, knowing that's the best I can do from afar.

Our dear friend, Beetle told us once that “Faith is our response to what God says”. Well, there’s something to ponder, eh?? Best of all - God is faithful and God is good, yes all the time.

We love you all bunches and thank you always for your love and faithful prayers.

Only By His Grace - Trish

Monday, February 13, 2006 8:16 AM CST

Please remember our dear Haynes families today ... this is the anniversay day of Stanton earning his angel wings. I so wish I could be there for Stanton's balloon release and to be with my sister, Tina. My heart is there always no matter how far the miles are. Also, Tina has asked that we all join in prayer at 2 pm today. Especially, lift Tina, Jeff & Hayden as well as the rest of their sweet family. www.caringbridge.org/la/stanton

Also, please lift the Corlette family in prayer as Dalton, a neuroblastoma friend, earned his well deserved angel wings Sunday afternoon about 2:45pm. His mom Jackie & dad, Dalton certainly need our prayers. www.caringbridge.org/al/dalton

One more request - please remember our sweet friends Jake Raborn, Brent Nason, Madelyn Beamon, Chris Rasco and Christal Reynolds. Christal is back in school and continuing with life as close to normal as possible. These families are precious to us and we so appreciate your prayers as they bravely fight their battles with this outrageous disease.

We want to thank everyone who joined in our fight for raising money for St Jude during our radio a thon. This year's total was over $71,000 which was much better than last year. Our goal is to hit $100,000 next year and the wheels are already in motion to do just that. I look forward to the day that we get to announce "THE CURE IS FOUND!!" With each of our sweet friends who continue to fight, who have fought and won and our precious, sweet Angels who fought so hard and graduated to Heaven - our fight for you continues!

We love you more than you'll ever know!

Only By His Grace - Trish

Tuesday, February 7, 2006 8:17 AM CST

Good Morning to All!!

Don’t fall out getting 4 updates in 5 days!! Just never know, eh??

Our friends Jake McBride & Alan Woody at our local radio station, KIX 104 are getting geared up for the St Jude RadioAThon this Thursday & Friday. We are looking forward to being with them this week and raising money for “our kids”. Jake & Alan have set up to ‘work tips’ tonight and tomorrow night to raise money for St Jude. WELL … Eli & I are putting them to the challenge and we’re competing to see who can raise the most money in ‘tips’. Eli & I have set up a collection station with Brenda at Jim’s Razorback Pizza in Prairie Grove. So … let the games begin. Jake is just as competitive as I am so this should be interesting. Let’s just pray our tip jar is fuller than theirs by the end of the week or we’ll NEVER hear the end of it!! (smile) Hey, what’s a little challenge among friends ESPECIALLY where our kids are concerned. We’re hoping Northwest Arkansas will get behind us for St Jude as I don’t have to tell you how dear they are to our hearts!

Jake & Alan are also setting aside “Emma Grace Angel” hours for folks who would like to donate in her honor during these two days. I will post the times as soon as I get the info. The toll free number to call on Thursday and Friday is 800-303-1045. We know there are many of you who already support St Jude and we appreciate your generosity more than you'll ever know!!

Also, the Ronald McDonald House of Memphis is having their annual RadioAThon starting Thursday at 6 am until Friday at 10 am. You know this was our home-away-from-home on three separate occasions during Emma Grace’s treatment. Sherri and her crew is family … period. We wish that we could be there to help them again this year but as big as I am, I still don’t slice that thin. Give them a holler at 800-230-KIDS.

BIGGY PRAYER REQUEST:
Jake Raborn is headed back to Memphis on Wednesday … I talked to Don & Staci this morning and they need our prayers. Jake is going into “uncharted territory” with this experimental transplant. He has a 6 out of 6 donor match and will be starting the pre-lim testing to get things headed in the transplant direction. Please cover our sweet Raborn’s in prayer as they start this new leg of Jake’s journey. If you get a chance, check out Jake’s website. I LOVE what Daddy Don put at the end of his posting yesterday.
www.caringbridge.org/la/jakeowen

Also, please remember Dalton Corlette, a neuroblastoma friend who appears to be in his last days with this terrible disease. He is fighting with everything he has. It is heartbreaking these sweet children have to fight this beast so hard. Please pray for his comfort and peace as well as his family.

Sweet Christal is home as of Sunday afternoon and was full of sass last time I spoke to them. Please continue to lift our sweet Florida girl up in your prayers. Http://christalinfo.servemp3.com

We love you all and thank you ALWAYS for you continued prayers. May His Sonshine surround you!

Only By His Grace – Trish

Sunday, February 5, 2006 9:07 AM CST

TALK ABOUT MUSIC TO MY EARS!!!
I just got off the phone with Christal - that's right Sweet Christal in person via the telie - she is doing very well since her surgery yesterday. The very first thing she said was "Get DOWN HERE Woman, SHEESH!!" Not 'Hello', nothing, just "Get Down here!" I thought I was going to fall off my chair!! She's such a little hoot!! She's in the crafting mode and busy busy this morning. THANK YOU LORD!! Chris said the doctor should be in soon and hopefully they can talk about discharge tomorrow?? THANK YOU THANK YOU for your continued prayers! I know they would love a note if you get a chance http://christalinfo.servemp3.com

Another PRAISE REPORT! Little Madelyn is off the vent and back on the 2nd floor!! What a blessing! We are so thankful to see such a turn around for Madelyn. God is good, yes, ALL the time!! www.caringbridge.org/tn/madelyn

SATURDAY:
THANK YOU FOR YOUR PRAYERS ... Chris called and Christal's surgery went well. The neurologist was not comfortable with the drain being 100 percent clear so he replaced it. Chris said the surgery went earlier than planned and everything appeared to be good. Thank you for your continued prayers for Christal.

SPECIAL PRAYERS REQUESTED!!!
Sweet Christal is having surgery approx 2 pm EST for shunt revision. Her shunt appears to be functioning but the distal drain is not working properly and Christal has considerable fluid buildup which equals pain. Please remember our precious girl and Momma Chris who is having to do this surgery alone. This is one of many surgeries that Christal has undergone and we pray this one will give her some much needed relief. God is there and knows all about our girl. Thank you so much for your faithful prayers! Will update more later ... please feel free to stop by Christal's website http://christalinfo.servemp3.com
We love you!!

Friday, Feb 3rd Update:
And here's another Friday ... whew! Are we in time warp??

This isn't just any FRIDAY ... this would be Bubba Eli's 14th birthday!! HAPPY BIRTHDAY SWEET BUBBA!! I cannot believe he's 14 - talk about grey hair! I find myself looking up to him now as he passed me this summer. We had wanted to go to Minden this weekend for the St Jude Auction in honor of Stanton but realized it conflicted with Eli's birthday. I've said it many times before - everyone made huge adjustments with our being gone to Memphis for so long but Eli made the biggest sacrifices. He's grown up so fast and much quicker than he should have had to. Trust me, he's still all boy but seems older at times than I think he should. It's time that he's in the spotlight so we're staying home for him to go bowling with his friends.

This is one of those really short notes ... we've been blessed to have Barney's Aunt Cindy staying with us since last weekend and I think she's staying until Sunday. She is quite a lady and we sure enjoy having her with us.

We want you to know that we love you and thank God always for you! Thank you for your continued prayers for all our kids still in the fight. Please remember Tina, Jeff & Hayden as they go thru another first with the St Jude Auction. Also, with the auction itself which benefits our kids.

Have a blessed weekend and we love you!!

Only By His Grace - Trish

Friday, January 27, 2006 12:30 AM CST

It REALLY IS FRIDAY!!!

Oh my, what a week! I have played a bit of catch up from my travels to DC last week - which by the way, I am still pretty overwhelmed by that whole experience as if you couldn't tell by the previous journal. And I have blinked my eyes to see Friday staring me in the face.

Each day continues to fill my heart with memories of our sweet Emma Grace. Selfishly, I just wonder what she would be doing today and I try to keep in mind that if she could, she'd never want to be back here - especially, if she wasn't whole and well. She is whole today as I type, she's running, dancing, singing, praising and the laughter - oh, I can almost hear those precious giggles. And she is in the very presence of God with love like we can only imagine. Can you get your head around it?? I can't but I try. As much as I try to understand and accept, the missing her doesn't ever get easier or go away no matter what the text book says about grief. I am counting the days that God explains it to me and looking forward to knowing when I see His face, no explanation will really be needed at that point.

So ... last weekend Barney, Eli & I were headed into a restuarant and someone honked their horn. Eli immediately said in his best Emma Grace impression, "who's that hoinking their horn??" Yes, 'hoinking'. It made me laugh to hear Bubba imitate his sweet Sissy. So next time someone rudely 'hoinks' their horn at me and I really want to fuss about it or just 'hoinks' of any kind - I've just decided to laugh. Thanks Emma Grace! "Hoinking" what a great word!!

Hope this note find everyone well. Please continue to pray for Christal, Jake, Brent, Dalton, Chris, Madelyn, Ben and all our children who are fighting the beast daily. We love you all and are ever grateful for your love and friendship. God is good, yes, all the time.

Only By His Grace - Trish

Saturday, January 21, 2006 12:57 AM CST

THE THRILL OF THE HILL!

Well now … the dust has settled and my first memories of DC are incredible! (Grab a chair and sit a spell … I’m catching up)

Monday was quite the blur as we put the finishing touches on Emma Grace’s “Tater Diggin 4 A Cure” photo journal. Thank you Mom and Aunt Judy for being my sanity of getting them put together. You two cannot know how grateful I am you showed up when you did. I actually got some much needed rest and was pumped and ready to go Tuesday morning. Everything fell in place, I was packed, running on time (big surprise for those who know me well) and I picked up Mom at 4:30 am so she could drop me off at the airport. I’m not really sure what happened except I made two HUGE mistakes … after checking my luggage and getting my boarding passes, I failed to recheck the time of departure and the gate. Obviously, two mistakes that would be the demise of missing my flight … yes, and for those who know how small Northwest Regional Airport is, that’s quite a feat!! The morning started with a huge meltdown. How in the world could I miss THIS flight?? I’ve never missed a flight in my life but now we can add this one to my list. Long story made short – the Northwest agent was very consoling and so very kind in getting me on another airline that got me into DC by 2:45 instead of noon. So, yes, Tina flew by herself from Memphis to DC and is STILL not letting me live down my error. Ha!

Emma Grace and I had flown out of this airport many, many times together and to say I was a bit “out of balance” without my little travel companion would be a major understatement. The emotions were just below overwhelming but I was managing. With every step I took I recalled her being with me. The many times I carried her thru security because she was sound asleep, juggling her and her stroller breaking it down to scan while getting my shoes off. I even saw her while making our ritual ‘ladies room’ stop with her instructing me the whole time of ‘not touching anything’ and using ‘hannatizer’ even though we had just washed our hands. (Was she a trained cancer patient or what?) In flight, the clouds were abundant and I can still hear her asking to walk on the clouds. I kept looking for her dangling her legs off a cloud saying, “See Mom! I CAN sit on the clouds without slipping through!! Now! Watch me run!!” Needless to say, my first flight without her was flooded with memories – memories I will cherish for the rest of my life.

When at last in DC, I was in total awe of the history I, this ole country girl from Arkansas, was in the very midst of. I was quickly wondering if I had bit off more than I could chew. I finally arrived at the hotel a little before 4 pm and what a welcome sight for sore eyes – my friend, my sister, Tina! She had told me on the phone when I arrived at the airport we were ‘little fish, big, BIG water’. I couldn’t have agreed with her more.

We headed off to the reception dinner at the Capitol Hill Club at 5:00 where we met Kate and Kelly from CureSearch for the first time. We had been corresponding thru teleconferences and emails so it was great to finally get to meet them. The reception was great. We met many other Team Leaders all with many heartbreaking stories of what brought them to DC as well. There were many new Team Leaders like Tina and I and there were several people who are ‘veterans’ to the Hill and offered great support of what to expect. Each one said, “tell your story – don’t worry about anything else except telling your story.” That I could do, that’s our reality – the rest would work out. We received our ‘draft’ appointment schedules for the next day which could change by the next morning. My first was scheduled for 10:30 and the last at 5:00. I learned from Kate that the President and CEO of CureSearch would be accompanying me on my first two appointments. (Well, NO PRESSURE NOW!) He is a great man, Mr. Paul Burke. We met Tuesday evening and I questioned him as to being nervous. (ha) This is his territory and has lived in Washington for several years so I felt pretty secure being led into my first appointments with him leading the way.

Wednesday started off early … breakfast and training at 7am. (that would 6AM Arkansas time!) and to top it off it was POURING!! With being in the midst of a drought back home, I had not had the foresight to pack an umbrella, nor did Tina. (And she’s ALWAYS prepared) God knew we needed some reprieve so while the training session was on, it rained and poured then cleared off just in time for the appointments to start.

My appointments started at 10:30 with Senator Blanche Lincoln. It was unbelievable. I realized very quickly this is RIGHT thing to do. Senator Lincoln was absolutely wonderful. The compassion with her as well as her staff was more than we could ask. Mr Paul discussed the authorization requests we were presenting and I gave our story. We left the appointment with all the support we needed as well as tears and hugs from one mom to another. Now, starting with Senator Lincoln was just the extra boost I needed to gear up for the next 5 appointments. She encouraged me to share our story and the photo journal (which she left with in her hands) with every office I would meet throughout the day exactly as I had done with her. Mark, set, here we go!

So, the next appointments were the same wonderful response. I met with incredible staff members from offices of Senator Mark Pryor, Congressmen John Boozman, Mike Ross, Marion Berry and Vic Snyder. Every appointment encouraged me to continue on with the same passion that they were behind us for the cause of needing more funding for childhood cancer research. I’m not sure what I expected when I started the day but by the time the last appointment was complete, it was an overwhelming sense of accomplishment. I know there are many hurdles to cross with the aspect of budgets, battles to get our bills signed, sealed and delivered, etc. But just as many offices shared they have a precious little face from their home State to remind them to continue with our fight to hopefully, get the much needed funding of research for the ultimate cure for our babies.

When I stepped out of the House building after my last appointment (which I was solo on the last 4), I left the building from a different door than I had entered earlier. I look up to see the Capitol Building standing directly in front of me and was awestruck again at the enormity of its size and especially, the history that was all around me. I stood there realizing the prayers of many who had gone up on my behalf just to make it through this day, the photo journal of our sweet little Angel Emma Grace who I carried to each office of exactly why I was there in that very spot, sensing Emma Grace’s courage to do “Whatever It Takes” and humbly, God’s tremendous blessing and strength for the day. I walked back to the hotel in pure amazement – tired yes, but pure amazement.

Tina was waiting, already in her pj’s with the same “Thrill of the Hill” that I have. She shared of how her appointments were met with the same compassion and concern for our children. We were both asked several times throughout the day, “How can you do this with just losing your child?” Our responses were the same – it’s not just our children, there are so many families fighting daily with their babies and no family should have to face childhood cancer much less lose a child. No, our efforts will not bring back Stanton or Emma Grace but our hope is other families will not have to face the fight of cancer with no options because the research is just not there to cure them.

Wednesday night Tina and I ordered dinner in (DUH – as I was also in my pj’s in short order) and we just rested. The day had been full of emotion and we just crashed. Tina didn’t even know whether I was talking to her in my sleep that night as I had the night before. She sweetly obliged me by carrying on a full conversation which I’m sure she will also never let me forget. Ha! We had a great time, it was exhausting and from the time we left that morning from training, we only saw each other twice – once during our quick lunch and we actually ran into each other in the tunnel connecting the House buildings – but it was memories that I am so thankful we shared together.

I’ll say it again – I assure you, the Arkansas and Louisianna elected members and staff KNOW who Stanton and Emma Grace are and what an impact they made on our lives as well as the lives of so many others. We not only carried our Angels to the Hill but many, many others who have fought, who are still fighting and those who will be in the fight. The battles are ongoing and we pray the war will soon be won for all – completely cured.

Leaving Capitol Hill was again breathtaking – the Capitol Building, the White House, the monuments, the memorials, the Pentagon – all of which we had only seen from afar in the past, now to be seeing first hand. It was incredible! Thursday’s flight schedule was uneventful in the fact that I MADE my flight as Tina will concur being to her attribute. (smile) We both rested to Memphis and I’m quite sure both of us were snoring at some point but who cared. We shared lunch at the airport knowing that we would be parting soon. Neither of us said much about it but it was ever present. And of course, when that time came we hid what we could. Leaving Memphis in itself is heart-wrenching and especially, when we don’t get to see each other very often. Again, I guess it always goes back to leaving a place we will always have in our hearts – the place where our Angels left us for awhile to go Home.

Thank you for your many continued prayers not only for our family but the many families who are in the fight of this beast. Please remember little Madelyn Beamon who is in ICU on a vent due to side effects from the antibody treatment. Madelyn is also a neuroblastoma child who continues to struggle with sheer grit and determination to defeat cancer. I know her family would appreciate hearing from you at www.caringbridge.org/tn/madelyn.

Also, please remember our little Jake who is currently doing another round of chemo and hopefully, will be out of the hospital today. Their days are on the balance of ‘whatz next’ so please continue to lift them in prayer for the comfort and peace in their decisions. It appears they are leaning to the transplant phase but everything has to fall into place. www.caringbridge.org/la/jakeowen

Sweet Christal is home and they met with Hospice this week which Chris said went really well. She said it was good to visit with them prior to an ‘at need’ situation so they are comfortable with the support that is there if they need it. God is still in the miracle business and we are praying. I know they would love to hear from you at http://christalinfo.servemp3.com

Mimi Sharyn asked for special prayers for their Sarah Claire as Mississippi Medicaid is no longer covering her weekly therapy due to cutbacks. This is heartbreaking as Sarah Claire has made gradual improvements over the past couple of years and certainly, needs this weekly therapy in order not to lose what little ground they have accomplished. This sweet family has won the battle with cancer and now is having to fight the system to continue to give Sarah Claire what she needs to continue to improve her quality of life. I know that Monica and Sharyn feel this is one more fight they are willing to make but it is not even an issue that should have been thrown at them with all they face everyday with caring for Sweet Sarah Claire.

We love you all more than you can ever know. Your encouragement and prayers are overwhelming. We continue to thank God for the gift of your friendships. Keep looking up with us.

Only By His Grace - Trish

Thursday, January 19, 2006 6:36 PM CST

We're HOME-HOME!! And oh is it, home sweet home!

A quick note to say that Washington DC is incredible!! Yes, TNT made their mark in our debut speakings on The Hill and it went very, very well. I met with all the Arkansas delegates and Tina met with the Louisianna folks. Let me assure you - they all know about Emma Grace and Stanton, not to mention all our friends who we went representing that are still in the battle. Capitol Hill was quite an experience and needless to say, I'm still trying to soak it all it. One thing I can say to our fellow Arkansans - you can be proud of our Arkansas representatives - they are very compassionate about our children.

This will not be surprising but this country girl is ONE TIRED GAL!! I will update more later but I just wanted to let you know we are home and thank you so much for your many prayers!

We love you and cannot thank God enough for blessing us with you!

Only By His Grace - Trish

Sunday, January 15, 2006 9:41 PM CST

Hello and Happy Sonday to All!

Of course, I have let another week pass me by without updating and as suspected, yes it’s been wild to say the least. The trip to The Hill is approaching and we’re getting excited / anxious – in a good way. Tina and I are counting down the days. As I’ve said before, this is “something” I can do when often I feel totally helpless in “doing” anything.

First, as most of you may already know, our sweet Christal did not get good news at all. Chris was expecting most of it but UGH!! nonetheless. There is disease that is present along the spine causing the CSF, (spinal fluid) to not run the way it is supposed to and slowing things down. Chris anticipated there would be as Christal has been having back pain. As Chris put it, “they have sent us home without any further appointments and the information for Hospice.” Have I told you lately HOW MUCH I HATE CANCER?!?!? It just makes me sick and so heartbroken for Christal and her sweet family. The truth is … Christal is the one who wins but that doesn’t make it any easier for her family and friends who love her so. And as you can presume, that entire family is ours – so we’re heartbroken right along with them. Chris is such an incredible woman, mother and dear friend. She really is and for those of you who have not had the pleasure of meeting her, let me just assure you … she is a rock. Please pray for them as they live life to the fullest in the days ahead and again, if you know Chris, you know that’s EXACTLY what they’re going to do. I know they would love to hear from you if you get a chance. http://christalinfo.servemp3.com

Barney and I did make it to Memphis this weekend and boy oh boy, were we glad we did. Chris, Christal and Kylie had to stay another night with late appointments so it worked out that we rolled into town around 9:00ish. Christal was watching out the window of the Grizzlies House waiting for the big red truck to roll in. We had a great time getting caught up on such much needed hugs and obviously, shared a few tears. Christal did her favorite, climbed up into Barney’s lap and laid her head against his chest. There just aren’t words that need to be spoken between those two and so there weren’t many. He even laid down on the bed with her as she fell off to sleep. It was great therapy for both of them. Thanks Chris for hanging out another night! It worked perfectly, just as God already knew it would.

We attempted to donate platelets Saturday BUT a) Barney’s iron was too low so that knocked him out and b) St Jude was in desperate need of O neg red packed cells so they put me on the Trema machine that collects both red packed cells and platelets. I made it good until about 30 minutes into the process and blew a vein. Needless to say, I was quite disappointed because we had to stop. They did get enough platelets for a baby so I did accomplish part of what I needed to I guess. And wouldn’t you know, it all happened about the time Christal, Chris and Kylie were leaving St Jude so it was time to say “so long for now” to them. We won’t even go there on how heartbreaking that was.

We did make rounds to see everyone we could on the 3rd and 4th floors. It is always so good to hug necks of those who did everything they could and then some to take care of our baby girl. St Jude is beyond amazing in my book. We also had the blessing of seeing Chris Rasco and his mom, Doris. Chris is in the middle of another round of stem cell rescue which means high dose chemo. He seems to be doing well. They are such a sweet family. Please keep them in your prayers as well. He has two more rounds after this one.

Brent Nason took off for a home-home trip so we sure missed getting to see them. Please continue to lift them in prayer as he is starting the antibody treatment for neuroblastoma. www.caringbridge.org/ms/brentnason

Jake and his Momma Staci headed home on Thursday. They met with the transplant team on Wednesday and are still in the decision process of what to do next. Barney and I have talked to them several times last week and our hearts break for them as they fret over these decisions. (HAVE I TOLD YOU HOW I HATE CANCER?!?!?!) Please pray for Jake and especially, sweet Staci & Don as they face their decisions with courage, strength and most of all, peace. www.caringbridge.org/la/jakeowen

Barney had planned a birthday party behind my back (that I ruined by emailing everyone for ‘lunch’) with Nancy and the crew. It was a great time regardless of my ‘intervention’. And the fellowship was fabulous. We missed seeing Dr. Ray but his agenda was somewhat overloaded for the weekend so he’ll have to catch up next round.

Barney and I headed home late Saturday night with the windshield in front of us and as always, the emptiness of going home without our Emma Grace. I don’t guess that feeling will ever end. We do enjoy getting to donate platelets and seeing some of our friends but it always ends the same … a long, quiet ride home.

Ok, I’ve got to get back in gear … you know what a procrastinator I am and there’s some ‘finishing touches’ I need to make on Emma Grace’s story. Just so you know, I felt it appropriate to title Emma Grace’s journey as “Tater Diggin 4 A Cure”. So, that’s my mission … head to DC with visions of my little darlin’ tater diggin her heart out all over the streets of Heaven. Can’t you just see her?? Ohhhhh, my sweet baby girl.

We love you all and thank you so much for the wonderful messages of birthday wishes and your prayers for Tina and me as we head out Tuesday morning for “The Hill”. Also, for your many continued prayers for our family. Thank you! You cannot know how grateful we are to you for your faithful prayers and especially, for God sending you our way. Please continue to remember all our precious babies and their families as they face their days “in the battle of cancer”.

Only By His Grace - Trish

Friday, January 6, 2006 8:06 PM CST

Just a quick note of hello and we're hanging in there. It's been a wild, flurry of a week. (Glad it was only a 4 day work week!) The last thing I wanted was not updating this week and getting a rash of 'get r dones' from 'you know who'. (smile)

Barney is headed home from Wisconsin, Eli started back school on Thursday and I'm getting anxious / jittery about DC. Let's all pray that NW Airlines get their "issues" resolved and NOT go on strike Jan 17th. That would certainly make things interesting, eh??

Barney and I are headed to Memphis next weekend to donate platelets. In the meanwhile, I will be trying to get my stuff together in preparation for sharing Emma Grace's story on the Hill.

Barney's Aunt Cindy is spending the weekend with us and we are looking forward to her staying with us. Her mom was Emma Pumpkin, who is Emma Grace's namesake. She was delighted that we had named our precious daughter after their mom, Emma. She also had a daughter, Emily, (named after Emma as well) who was tragically killed in a car accident about 20 yrs ago. I met Aunt Cindy for the first time last weekend and we obviously, connected. She should arrive within the hour and again, looking so forward to spending some precious time with her.

Please pray for Jake - PET scans on Tuesday and also, Staci and Don as have some heavy duty decisions to make concerning what to do next. I so wish I could wiggle my nose for them to make this easier for them. We've been there and know, it's just so difficult to know 'whats right'. Trust and believe, Staci & Don. We're all praying. www.caringbridge.org/la/jakeowen

Also, please remember Brent as he starts treatment again soon as they face their 'set up' instead of 'set back'. I'm with Tina ... I love Tonya's outlook. God is certainly large and in charge! www.caringbridge.org/ms/brentnason

Sweet Christal will be back in Memphis on Wednesday for scans. Please pray for direction and guidance as they in the land of 'unknown'. We're praying the gamma knife has gained some serious ground for them. http://christalinfo.servemp3.com

You know I can't close without saying, has it really been only 7 months since Emma Grace blasted thru Heaven's Gates?? Ages and ages seem more like it. And thankfully, by God's grace, her days are timeless. She'll blink her eye and see us again. And what beautiful eyes I look forward to seeing knowing in my heart they are even more beautiful in reflection of God's light. I don't think I'll ever be able to fly again without thinking of how she loved to fly, how she won the flight attendants' hearts, made her way into every cockpit to meet the pilots and her infamous statement of "Hey Momma, I want to walk on the clouds." You reckon she's not only walking but dancing on every cloud of her choice by now??? I can only imagine.

We love you all and thank you always for your continued prayers not only for our family but the many sweet families who are fighting in tandem with their babies every single day. Praying for their peace, comfort and BOLD BRITCHES to continue to fight!!

Only By His Grace - Trish

Friday, December 30, 2005 9:41 PM CST

Ok … so when I pulled up this update it was started on 12-5-05, I realized that I am WAY FAR behind on my updating … like I didn’t need to tell you all, eh?? My sweet friend Vicki reminded me that it had been 12 days since I had updated before the Christmas morning update. Not exactly the tune of how the “12 days of Christmas” should read, eh? So, the best I can do now is retro. Bear with me.

First, one of our precious friends needs our prayers – Brent Nason’s scans did not come back as we had hoped and prayed. His neuroblastoma has relapsed and he certainly needs our prayers. Barney and I talked to his mom, Tonya, this evening and they are headed back to Memphis next week to start treatment again. The Nason's are a precious family who has stolen our hearts. Our prayer is the Team at St Jude has gained critical knowledge in treating this beast and has the battle plan ready for our Brent. God is there and He knows all about it. I know the Nason’s would appreciate your encouragement and to know you are lifting them in prayer. Brent’s website is www.caringbridge.org/ms/brentnason

Also, the Williams family needs our prayers. Wayne Williams, aka “Root Beer” had a fatal heart attack and wrecked while driving one of their big trucks in Albuquerque, NM on Christmas morning. Wayne was the only vehicle involved which is a miracle as he crossed the median, two lanes of traffic before stopping on the opposite service road. His wife, Joyce and Wayne have been friends since my days at the Peterbilt dealership. Please lift this family in prayer as Wayne’s services were today.

Happy 4th Birthday JAKE JAKE!!!! (Dec 31st) OK … Jan 4th PRAY PRAY PRAY … as Jake is going back to Memphis for more evaluation. His AFP did not budge after this last round of chemo. This precious little man has been thru so much and if the AFP is rising, they will probably scan again and we need the docs either to see something so they can get it OUT or better yet, let’s just pray there’s NOTHING to get and the AFP goes down!! Most of all clear a CLEAR PLAN of what to do next. I was just talking to Daddy Don and I could hear in his voice the uneasiness with such uncertainity of 'whatz next'. We just have to keep looking up together with the Raborn's. God's got it all worked out, so we pray and pray and pray. Please feel free to drop our precious friends a note of encouragement that we "BELIEVE" at www.caringbridge.org/la/jakeowen

Please continue to pray for Christal as she is recovering from gamma knife surgery / radiation. Chris said she is doing much better and even getting around better. Sweet Christal’s website is http://christalinfo.servemp3.com

Ok, so this is part of what I promised to announce some weeks back …

Back in October, I received a call from Kate Shafer from CureSearch Foundation. They are also Children’s Oncology Group better known as COG which is composed of over 5,000 pediatric oncologists and researchers who are committed to finding a cure for childhood cancers. Anyway, Kate asked if I would like to be a Team Leader for the State of Arkansas for CureSearch which means going to Washington, DC twice a year to meet with members of Congress to ask for more appropriations to be set aside for childhood cancer research. CureSearch help fund children oncology hospitals all over the country and yes, St Jude is certainly a receipient. In fact, Dr. Barfield is a member of COG, so we have been familiar with them for well over a year. Well, anyway this is something I feel I can “do” in a world where I’m not sure what to “do” next. So, I accepted this honor and will be representing our State on January 17 – 18th. Talk about the country mouse going to the city?!?!? As I have mentioned before, a few things ‘feel right’ but this is one of those blessings that came along that I just knew God laid in my lap. What a tribute for Emma Grace and hopefully, to be an effective voice that will share her journey and share why we feel so strongly in this mission to defeat childhood cancer. Not that I think this will be an easy task but definitely something I will do not only for Emma Grace but our many other precious friends who are still fighting this horrific battle.

In talking with Kate from CureSearch, I learned that Louisianna did not have a Team Leader for their state and I referred Tina Haynes. Long story made short, she accepted as well and Tina and I are both headed to DC for the upcoming meetings. Needless to say, Tina is just as thrilled as I am to have “something we can do” in honor of our babies. TNT in DC … Do you think DC will ever be the same?!?!? Well, we’ll leave that for further discussions later. (ha) Please pray for us in travels and to accomplish the task at hand in sharing our voices to ask for more funding. Their website is www.curesearch.org

Now for some back pedaling to catch up …

Christmas week …
I am sorry but ‘getting by’ is about the max right now. I have heard folks say all my life how Christmas and the holidays in general can be so hard. I’ve always looked so forward to getting to spend time with our families, enjoyed the craziness of shopping and most importantly, the designated time to celebrate Christ’s birth. (Which should be a year round celebration in our hearts) But you get the picture. First and foremost, I’m so very thankful that God loves us so much that He sent His Son to become flesh, with a plan and a purpose. He loves us just that much, knowing His life on earth would be short, just so we could have the opportunity to live forever with Him. We just cannot completely understand the depth of God’s love … yet one day we will. And that’s certainly the day I look forward to. In the meantime, the reality of life surrounds us.

It goes without saying that this time of year is unbelievably difficult. For those of you who know, know – no explanation needed. And for those who can only imagine, I pray that’s all you’ll ever have to do. I’ve thought there were some really tough things that I had been through over my 41 years but none of it is a drop in the bucket compared to losing our girl. I see Emma Grace in ever turn (just like every other day) and all the things I know she would love to be doing and enjoying during the holidays. Our church performed a wonderful Christmas play that was such a blessing … angels singing, Eli was Joseph (who also sang a solo – key word so-“low”.) and he did a great job. I guess I will always imagine what Emma Grace would have been doing – what part Emma Grace would spark up, how loudly she would sing and yes, her wings and halo would be crooked but radiant. I just imagine her halo today is set perfectly among her beautiful curls, blue eyes reflecting His light and the entire Heavenly scene is radiant beyond compare.

Christmas day was just about too much … the emptiness was obvious with Barney, Eli and me yet we tried. I felt it was hard to know what to do next, it was as if I was lost in my own house not knowing what or where to turn. And I replayed (as I do everyday) what we were doing this time last year a bazillion times Christmas morning alone. We went to church, then had planned to spend a quiet time at home. Last minute plans changed and we spent the afternoon and evening at the Bailey’s cabin in the woods. It was perfect. The last thing we needed was stay at home surrounded by a tidal wave of more missing of our girl. We can do that anywhere. So, we were so very thankful for the invite to ‘get away’.

Eli’s older sis, Amber ties the knot – Dec 10th …
Amber and Donald Reed were married Dec 10th and what a beautiful wedding for such a beautiful couple. I’ve always been very thankful that Joyce aka ‘my ex-wife-in-law’ and I have been friends for several years and during that time I have remained and claimed as Amber and Oren’s ‘other mom’. They think the world of Barney which makes it all even more special. Well, the wedding was a time that Joyce and I got to spend some special time together as Barney and I were doing the flowers for the wedding as their gift. No, that does not mean that Barney was wrapping flowers but he did have the special honor of opening the double doors for Amber to walk down the aisle. He said she was such a beautiful sight as he opened those doors for her to walk in the chapel. Eli was an usher and was thrilled to get to be wearing a tux like the ‘guys’. And I had the honor of not only getting to give Amber her custom bokay that I had made, tucked with a purple & pink butterfly as only Emma Grace would have chosen, but also I got to play the piano to announce Amber down the aisle. Amber had always said from the time Emma Grace was born that she would be her flowergirl, so Emma Grace was there but not in the way we had all once thought, but none the less, she no doubt had the best view. The whole wedding and reception was absolutely gorgeous. Naturally, when it all came down to wedding day, I realized real quick that I wasn’t as strong as I thought I was or could be. The reality of not getting to do the same for Emma Grace someday was quite sobering but we did our best to make Amber’s day perfect.

A Really Delayed update from the St Jude Marathon Weekend, Dec 3rd: …
Eli, Nanna & I made our way to Memphis Friday afternoon and had a fabulous time. We made it just in time to meet a whole passle of folks for dinner – if I counted correctly, I think there were 34 of us for dinner. It was so good to see Tina & Hayden again. It’s been way too long and even though we didn’t get to spend as much time as we wanted, it was time well spent. Mr. Jeff didn’t make it this trip but we saved a few hugs for him next trip. My dear Aunt Judy brought ¾ of her family – daughter Janet and daughter in laws Brandi & Mindy were all three running in the half marathon. Angie & Jason Thomas from Aunt Judy’s church also ran in the half & full marathon, respectively. Aunt Judy had 3 out of 5 of her grandbabies with us so it was babies, babies everywhere! The Raborn’s were in full force and what a sight for sore eyes they were! That Jake Man was zipping in and out of tables with Mason, Angel Shae’s brother, right on his heels. They were having a blast! Thank you Todd & Dawn for being such precious treasures to all our families. No night is complete without Nancy & Laura bringing the house down – well, not quite but we sure gave our waiter a few grey hairs. Oh well, when that many people work so hard to make a night special, he just had to improvise and roll with the punches. The food was wonderful but the loving friendships that surrounded those tables are priceless. I just kept looking around the room feeling it was all still pretty surreal and yet thinking how in the world could we have made it through this journey without these precious people in our lives?? God knew and He took care of placing each one in our lives. The St Jude Marathon was incredible … I believe the count was 8400 runners!! Talk about an awesome sight, quite humbling and very emotional. Thank you to every runner and supporter who made this event a huge success!!

Whew! I believe I have just about covered it … if I left something or someone out, I apologize now. We love you all more than we’ll ever be able to say. The overwhelming kindness you have shown our family is forever humbling. We pray your Christmas holidays have been beyond blessed and the New Year is overpouring with God’s greatness. With so much going on in all our lives, one thing is for sure – God is in full control, His arms are never too full and His love covers all.

Only By His Grace - Trish

Sunday, December 25, 2005 12:52 AM CST

Happy Birthday Jesus!

Wishing you all a very Merry Christmas!
The update is still on my word doc as I try to finish ... I just can't. Sorry but the words won't come. The obvious is what it is and we miss Emma Grace beyond words.

Please know we are so very grateful to you our family and friends who continue to lift us in prayer and especially, those sweet friends who are fighting the beast as we speak. Brent Nason is having scans this week, Miss Christal recovering from GammaKnife procedure, Mr. Jake Jake, scans Jan 4th and the many families whose angels are celebrating with Jesus in Heaven.

We love you and thank God for you always ...

Only and ONLY by His precious Grace - Trish, Barney & Eli

If you sense the touch of an Angel's wing,
and feel the need to dance and sing,
Just imagine Emma Grace singing in chorus,
and dancing with the Jesus as they rejoice.
Today she celebrates His birthday in Heaven,
Thanking Him personally for the Love He has given!

Momma loves you sweet baby girl!
by Momma Trish Dec 25, 2005

Tuesday, December 13, 2005 10:45 AM CST

Yes, justified "Get-r-dones" are acknowledged. I've got an update started from last week that I promise to finish hopefully, tonight. I just wanted you all to know we are ok ... just covered up, not to mention the holidays are pretty undescribable.

We love you all and I'll try to update more later. I knew I'd better touch base when I'm getting concerning emails and guestbook entries from people who usually don't say 'get r done'! You all are such a blessing and I appreciate your prodding.

Until later ...
Only by His Grace - Trish

Thursday, December 1, 2005 5:19 PM CST

Hello to all ... and BRRRRRR!! It's turned off quite chilly in the hometown. I do believe winter is here.

This will be a more abbreviated version ...
First, thank you for you prayers for Eli concerning his schoolwork. This week proved to be better and he (we) did some serious studying for a US History test which resulted in a 98!! His teacher was thrilled, we were thrilled and most of all, Eli was ecstatic!! He needed a boost and he felt good getting that under his belt. Now ... onto the other classes with that much steam and we might just make it after all.

The week has been busy - Barney trucking, my working and getting ready for an upcoming wedding of Eli's older sister. Amber's mom, Joyce and I are great friends and I lovingly call her my "ex-wife-in-law". It always gets some puzzled looks from folks. Joyce and I have been getting to spend time together getting decor ready.

Also, Eli, my mom aka Nana and I are headed to Memphis for the St Jude Marathon, Half Marathon and 5 K. Have no fear, no one needs to look for 'yours truly' in any of the above but Eli is walking the 5K with Mr. Don, Jake's daddy and also, my cousins Janet, Brandi and Mindy are the Half Marathon running in Emma Grace's honor. Also, a couple from Aunt Judy's church is running for our angel girl and her many friends. Thank you all to everyone who is Walking or Running for a Cure for the many families who daily continue to face unbelievable battles with their children. You all are true St Jude Heroes and we thank you for your loving, unconditional efforts to combat the beast!!

For those who want to meet up during the race, I believe the gameplan is to meet in front of the Pyramid for the start of the race then to the AutoZone Park at the ending of the races.

My sweet nephews Joey & Jimmy pulled off some great graphics for a personalized "Grace Race" tshirt. They turned out FABULOUS!! And of course, they incorporated "Tater Diggin for a Cure" into the shirts along with wristbands with the same - needless to say, all in arrays of pink and purple. It's safe to say that among the many things sweet Emma Grace will be remembered for - the "Tater Diggin Dance" is certainly a trademark which displayed that spit-fire, bubbly personality; so unpredictable and anything for a laugh or to have fun. I can see it like yesterday - her curls just bouncin' with blue eyes full of mischief, runs into the studio with Miss Laura, kicks her shoes in the corner and proceeds 'her dance'. Laura shot off some quick shots and then we fell out in hysterical laughter - Emma Grace included. And for those who never knew how the "tater diggin dance" was born - well, now you do. It was and still is priceless!

We are looking forward to seeing the Memphis crew as well as Tina & Hayden who are coming in for the race. We are looking forward to huggin' necks!! Mimi Sharyn & Monica had to cancel their Memphis trip so we decided to spend Saturday night with them in Cleveland. It's so hard to try to catch everyone with time so limited but we've just got to make the best of what time we can share together. It's certainly a weekend of travels but some much needed time together.

Thank you so much for your continued prayers and for the Hensley's and the Russo's whose Angels Pamela & Zachary went Home last week. Please continue to remember all our sweet friends who are still in the battle, the many dear families who are spending the holidays with precious Angels in Heaven and let's praise Him together for our many friends who have beat the beast and remain healthy.

We love you and are ever thankful for your friendships!

Only By His Grace - Trish

Sunday, November 27, 2005 10:52 PM CST

Sunday Update: Miss Pamela Hensley earned her "Golden Angel Wings" as she called them Saturday, Nov 26th around 1:30 pm. Sweet Pamela had said earlier in the week she knew "God is still in control" and she "wasn't afraid to earn her Golden Wings". Fly High dear Pamela, God has another sweet girl in His arms tonight and give our blue-eyed baby girl a kiss. Please pray for Jimmy & Cindy during this incredibly hard time. We love you and thank you always for taking our requests to the Father.

UPDATE: Please remember our St Jude friend, Pamela Hensley who is at home now and in a semi-coma. Her cancer has spread even more and the medical team feel her time is very short. I spoke with her mom, Cindy, this evening and she asked that we remember them in prayer. This is an incredibly hard time for them and our hearts break for them. Please feel free to leave them a note at www.caringbridge.org/tn/pamelahensley
Thank you for lifting our dear friends in prayer. We love you! The Hampton's
ps... thank you Tammy for calling us.

Blessed Thanksgiving to All!

There are so many things we are thankful for today and everyday. Our hearts are heavy missing our girl yet that's an 'everyday' occurrence. What joy she brought for all of us to share.

Today we're especially thankful to God for sending us you to walk this journey - there is no way we could walk this road without Him or you, we're thankful for His love and mercy to carry us through each and everday and ever grateful He allowed Barney and I to be so very blessed in being Emma Grace's Momma & Daddy. Most of all, thankful for His gift of eternal life. One day we can thank Him face to face.

May your holidays be filled with His joy and love. We love you and we appreciate your continued prayers as we face more 'firsts'. Can you imagine the feasts God serves everyday?? Emma Grace and her many friends and family know. Looking forward to sharing His table with them someday.

Only By His Grace - Trish, Barney & Eli

Thursday, November 17, 2005 5:07 PM CST

Sorry Crew ... I've been in the 'slacker' dept on updates.

Obviously, it's been pretty busy ... Eli and school (well, that's a full time job alone for any mom). He just seems quite disinterested and his grades are showing it. He knows the stuff ... just not getting the work done. Please remember him in your prayers ... he, like everyone else, it trying to find the 'norm' of life again and he's greiving just like everyone else. Tough stuff for a 13 y/o.

Barney has been doing some kind of truckin! He blows out of here on Sundays and back on Thurs, usually Friday. It's nice to have him here on the weekends. I got spoiled when he was with us everyday.

Work is still great for me ... I love the trucking business and am enjoying being pretty versatile in my position with the Traylor's. They are wonderful folks and I thank God always for placing me there. There are some more things in the 'hopper' that is developing but I'll have to update you later when I know more. Said that to say this ... please pray that God's will is displayed clearly to us so we make the right choices of what He wants, not us. I promise to offer more details later ... just too early yet. (AND NO ... to rest your minds, it has NOTHING to do with expanding our family. That has already been asked so I thought I would settle that issue)

Barney, Eli & I are headed to Memphis on Friday to donate platelets at St Jude on Saturday and see some of the St Jude crew. If someone would have told me when we left in June that I would be back in Memphis so quickly, I would have questioned them to say the least. After making my 'solo' trip, I think I may make it better this time. We are going to Hope to church Sat evening with Nancy, Janie & the Rev and then to church with Ashley Garrett and family on Sunday. We are so looking forward to seeing them all. Please pray for our safe travels.

I can't remember if I've mentioned this or not, so if I have, please forgive me. Saturday, Dec 3rd is the annual St Jude Marathon and my cousin, Janet and her sis-in-law, Brandi are running the 5K in Emma Grace's honor. My sweet nephews are working to get "Emma Grace" t-shirts ready for the girls stylish running attire. Of course, we have made plans to attend as well as the Haynes'. SERIOUS Tina & Trish Time coming up!! And the Raborn Army will be in FULL force ... Mr. Don is running in the marathon. So, you know we have to cheer him on as well!!

Well, gotta run ... laundry is going, supper is started and I'm thinking of what needs to be packed. It is so strange of all the many, many trips we made to Memphis, I'll never get used to loading the big red truck without our baby girl. The days seem tolerable but it is only by God's grace. There's just no set timeline of how long grief is supposed to last and somehow, I believe some degree of hurt will be with us until we see her again. And again ... God's grace and mercy is amazing. He still has work for us to do, so until then ... we're looking up to Him always. He supplies it all. Check out the guestbook of the great interpretation of Psalm 23 ... it's wonderful.

We love you all and thank you for continuing to remember all our family and friends whose babies are still in the fight. Please remember the Christopher Foppianno's family especially tomorrow as Christopher's services are Friday. www.caringbridge.org/tx/christopher.

You all are absolutely precious gifts from God and we thank Him for you always!

Only By His Grace - Trish

Monday, November 14, 2005 1:05 PM CST

Monday Update: We wanted to let you know that our little friend, Christopher Foppiano of Weatherford, TX earned his greatly deserved angel wings on Sat., Nov 12th. If you get a chance, please let his sweet family know we are all praying for them during this incredibly difficult time. We love you!
www.caringbridge.org/tx/christopher

Tuesday, November 1 , 2005 6:22 AM CDT

PLEASE PRAY FOR OUR SWEET FRIEND, CHRISTOPHER AND HIS FAMILY THAT WE MET ON OUR SEAWORLD TRIP WITH RMH LAST NOV. CHRISTOPHER WENT INTO CARDIAC ARREST ON SUNDAY AND THEY HAVE REMOVED THE LIFE SUPPORT AS OF YESTERDAY AFTERNOON. SWEET CHRISTOPHER IS IN END STAGE DISEASE WITH EPENDYMOMA AND HAS BEEN ON HOSPICE FOR SOME TIME. PLEASE DROP THEM A LINE AS WE KNOW THIS TIME IS UNBEARABLE FOR EVERYONE. THANK YOU SWEET PRAYER WARRIORS! WE LOVE YOU! www.caringbridge.org/tx/christopher

Friday morn insert:
A Prayer request or two -
Jake Jake is doing his 2nd round of chemo. GO JAKE GO!! www.caringbridge.org/la/jakeowen

Luginbuel's Funeral Home just called and Emma Grace's monument will be set this afternoon ... obvious prayer request for us today. I thought I was handling this better but now that it's on its way here to be set, I'm proving myself wrong. Barney will be in this evening sometime, please also pray for his safety.

PRAISE!! Our friend, Chris Rasco, is home from St Jude and just finished his radiation course. He will be home for 4 weeks then return for high dose chemo with stem cell rescue. They will live in Memphis for approx 4 months. I talked to his mom, Doris, last night for quite a while and Chris is doing great and they LOVE ST Jude! Thanks to our Sweet St Jude Team for doing what you do SO well!! You can visit Chris at www.curechris.blogspot.com

Check out the wonderful new song by Brad Paisley and Dolly Parton that I listed below. I just imagine Emma Grace telling all of us the same thing.

Love to all!! Trish

Good Mornin'!

I do believe this month is slipping away and it seems it just began. whew!

Great news! Eli got his cast off and he is thrilled! Of course, it's just in time because they have 2 football games left and the doctor released him to start playing again today with a wrapped support on his hand. I don't know if he was more excited to get to take a shower again or to be able to participate in football again.

Barney is on the east coast, delivered in New Jersey on Tuesday, headed to Turkey, NC for today then back to Moorhead, MS. Hopefully, we will get to see him Thursday or Friday. He's had quite a week of miles so I know he's ready for some downtime.

I made a flying trip to Memphis last Friday and stayed until Sunday ... yes, all by myself. It was a much needed trip but probably more difficult than I thought it would be. Once I crossed the bridge I knew that I wanted to stop into St Jude. It may sound crazy but going into St Jude was comforting - like going back home but this time with an obvious emptiness. I made a straightline for Laura took a deep breath then I knew I could do it. I got to see Dr. Gajjar who we love and Emma Grace's 'wild man', Dr. Santana. We had a great visit. He will always be part of our family and what a great man with a tremendous mission. I made it thru Medicine Room, Dental Clinic, B Clinic, Assessment / Triage, D Clinic, Sedation / Recovery (one of Emma Grace's FAVS!!) and visited with our sweet social worker, Ms. Judy. Now, if I start listing everyone, I will surely leave folks out so I'm not even going to try. Just know that I loved getting to see each one of you and for those I didn't get to see, we love you and think of you always.

I even made it to the 2nd & 3rd floor ... that's where my visit ended. I made it pretty good until I saw Julie, who was one of Emma Grace's ICU nurse. Julie took care of her quite often ... and well, that was just tough. So, knowing my limits had been reached, I bailed. Sorry for those I didn't make it to see ... I made it to the 4th floor and couldn't get off the elevator. I had well intended making it to CT Scan & MIBG after 4th floor but I crashed and left.

I left the Jude and went straight to see Sherri at RMH. What a welcome sight that girl was! It has been way too long!! Our visit was short and sweet and yet, quite bittersweet being back at "home away from home" again. So therefore, I bailed on Sherri pretty quick too.

The rest of the weekend was spent with Nancy, Laura, Janie & Janice. We hit El Porton Friday night and had about 23 (to be exact) nurses from 2nd & 4th floors to join us. It was so good to see them. Sat night we went to Hope for services and then onto the Compton's for dinner. We had a great time and realized other than being at Ali & Emma Grace's life celebration services, we had not all spent any time together outside the hospital. It was some much needed time with the crew. Nancy put me up in the penthouse at her house for the weekend and we even talked Laura into staying with us Sat night. As much fun as it was to see everyone, I knew the leaving would be UGGHH!! to say the least. Well, of course it was. The windshield time home was probably too much but it is such a comfort to know that our friends in Memphis are there thru "the good, the bad and the ugly". Laughter is certainly good medicine - no matter what.

Now, I said all that to say this - I didn't forewarn anyone that I was making the "fly by" visit because #1 - I wasn't sure I could 'do it'. I knew when I left home it was pretty difficult as it was another first. This time I was packing for Memphis without her. Besides, I made no plans except to show up in Memphis and spend time with Nancy and the crew. And it all worked out. On the way back home Sunday, I even got to meet up with my hubby in Brinkley to eat lunch with him as he was headed east.

Ok ... I've yet to really 'absorb' the weekend of emotions but I do know that God had good reason for me to be there and for me to be in service at Hope Sat evening. The message Dr. Craig brought was 5th in a series of "Get in the Game - building a life of service". It was really, really good. And, DUH!, I keep treading water knowing God has plans for me when I get to the 'swimming' function. I loved the verse that Dr. Craig started off with ... "Jesus said, "For even I didn't come to be served but to serve others and give my life as a ranson for many." Mark 10:45 NLT Whew! Of all people that have walked this earth that was beyond worthy to be 'served' actually came to serve. That is absolutely amazing to me. God is amazing ... period.

Thank you for your continued prayers for our family as well as for our many children who continue their fight. Seeing the halls of St Jude, the children's smiling faces, the Team that continues their missions of taking care of our children reminds me once again how God has blessed us. He has all of our journeys mapped out and we are ever thankful for His mercy, grace and most of all, His love. Thank you for being there for the journey that continues with your love and prayers.

Only By His Grace - Trish

NEW SONG BY BRAD PAISLEY w/ DOLLY PARTON!! I just heard it all they way through this morning and wanted to share it with you. You know this one touched our hearts!! Anytime Emma Grace would see my tears, she never failed to ask if I was ok. (Bless her heart, more worried about Momma than herself and all she was going through.) I would tell her "they were happy tears". Emma Grace - I feel pretty certain you have already asked Jesus if you could walk on the clouds like you always wanted to do. I just imagine you've danced across many by now and maybe found a drop of rain to ride! Not that you even know about our tears, but they are 'happy tears' for all the joy your brought into our lives. Momma loves you, baby girl!

WHEN I GET WHERE I'M GOING

"When I get where I'm going
On the far side of the sky
The first thing that I'm gonna do
Is spread my wings and fly

I'm gonna land beside a lion
And run my fingers through his mane
Or I might find out what it's like
To ride a drop of rain

(Chorus:)
Yeah when I get where I'm going
There'll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I'll leave my heart wide open
I will love and have no fear
Yeah when I get where I'm going
Don't cry for me down here

I'm gonna walk with my grand daddy
And he'll match me step for step
And I'll tell him how I missed him
Every minute since he left
Then I'll hug his neck

(Chorus)

So much pain and so much darkness
In this world we stumble through
All these questions I can't answer
So much work to do

But when I get where I'm going
And I see my maker's face
I'll stand forever in the light
Of his amazing grace
Yeah when I get where I'm going
There'll be only happy tears
Hallelujah
I will love and have no fear
When I get where I'm going
Yeah when I get where I'm going"

Friday, October 21, 2005 6:12 AM CDT

All is cool here ... literally. Our highs today are in the low 60's and as you might suspect, that says YES to me.

Eli is having 9 wks tests this week so "we've" been hitting the books and study notes. He's not been applying himself too well but I trust we are making improvements. The proof will be in the pudding.

Barney is rolling wheels and blowing smoke this week. He will be in long enough to grab more clean clothes and head out again.

Emma Grace's life celebration marker will be placed at the Angel Garden on Tuesday hopefully. We're anxious to see it yet it feels that is one of the last things we can "do" for her in earthly form. We look so forward to the day of seeing her in God's perfection. Don't you know she's in high gear with curls a-bouncin'?? I can almost hear the songs and laughter.

We trust your week has been going well and you enjoy the weekend. Please know that we love you beyond words and are ever grateful for God placing you in our lives.

Sorry for the short and sweet ... I'm headed out the door to get Eli to school and start our day. Please continue to remember our sweet babes.

Only By His Grace - Trish

Friday, October 21, 2005 6:12 AM CDT

All is cool here ... literally. Our highs today are in the low 60's and as you might suspect, that says YES to me.

Eli is having 9 wks tests this week so "we've" been hitting the books and study notes. He's not been applying himself too well but I trust we are making improvements. The proof will be in the pudding.

Barney is rolling wheels and blowing smoke this week. He will be in long enough to grab more clean clothes and head out again.

Emma Grace's life celebration marker will be placed at the Angel Garden on Tuesday hopefully. We're anxious to see it yet it feels that is one of the last things we can "do" for her in earthly form.

We trust your week has been going well and you enjoy the weekend. Please know that we love you beyond words and are ever grateful for God placing you in our lives.

Sorry for the short and sweet ... I'm headed out the door to get Eli to school and start our day. Please continue to remember our sweet babes.

Only By His Grace - Trish

Saturday, October 15, 2005 8:33 AM CDT

Good Fall Weekend to All!

We've had a pretty good week ... it's been busy which again is a good thing for me to keep my mind focused on tasks.

Barney has been gone all week long with a good week of trucking. He LOVES working for Allen's and a little bird told me they are loving him being there.

Eli is managing fairly well with his blue cast / broken hand. I think it still is giving him some discomfort but he goes back to doc on Tuesday for a check up. Needless to say, he's been an official team supporter from the sidelines.

Me, oh I don't know, I'm doing ... my friends, the Traylor's who I work for, were on vacation for about 10 days and I stayed hooked up to the plow keeping things rolling with Scott, their son. I love the trucking business and these folks are incredible. One thing that surely feels "right" in my world of trying to find the "norms" again. I'm not sure there's anything normal anymore but then again, most of you would agree that have known me for years and years - I never have been normal. (smile) That's ok ... I tend to agree with you.

Thank you all for the calls, emails and guestbook entries of support and love. You all know just when we need it the most. I'm glad that Jin Jin shared the "butter story" so I could share it with you as it had sure slipped my mind. Don, Jake's Daddy, told me this week that anytime he goes into a restaurant and there's butter brought out, he just leaves it there as a reminder of Emma Grace's butter addiction at the time. He's such a darlin'.

Jake seems to be handling his recent chemo very well and going strong. If you haven't read the "coke spitting" incident, you need to. It is on his journal history and certainly is SO JAKE AND MO!!! They are a mess together!! Please continue to lift him in prayer as he proceeds on with his battle. www.caringbridge.org/la/jakeowen

Also, please continue to remember our sweet Christal. She moved back home to Florida this week. They are going to take a break - for how long, not sure. Their immediate plan is get her back into school and enjoy life. I believe December is still on the agenda for next scans. She is such a remarkable little darlin as is her sweet family. http://christalinfo.servemp3.com

Well, the Saturday night plans are going to my dear Aunt Judy's for a barn party with the Maxwell Clan. It's been since we left last summer that we've been to any gatherings other that Emma Grace's Life Celebration service. You'll recall while Emma Grace was in ICU, my brother Chuck and Kellye tied the knot in Vegas April 15th. They requested no showers or any gift whooplah so we had always planned just to have a family gathering. With the change of events in losing Emma Grace, the gathering got overshadowed so Aunt Judy said we'd wait for cooler weather and do something in their honor. Aunt Judy had a great idea for a Dutch Oven Dinner. (You know we're all about gathering for FOOD and fellowship!) Everyone is bringing something - soup, stew, chili, etc - in a dutch oven. The campfire is already started in the outer shed so it will be a relaxing evening for all. I know that as always, we will miss Emma Grace being with us especially with all the youngins around. As I sit here typing, I look up on the wall and see Ali's picture that Nancy gave Emma Grace while in ICU that reads "Put Your Big Girl Panties on & Deal With It". My personal motto for the evening and apparently, the rest of my life. Also, I recall the infamous saying on the wall at St Jude - "God never promised us a perfect life, only His perfect love." His love is perfect and I'm so thankful for Him. He often carries us with strength and comfort when our feet don't want to walk. I'm so glad His arms never get too tired or too full.

We love you all so and thank you for being such wonderful, loving friends / family. May God's Sonshine surround you always! Please remember all our little friends who stick to their guns in their amazing, courageous battles.

Only By His Grace - Trish

Monday, October 10, 2005 10:15 AM CDT

Good Monday to You All … let’s get the ‘ugghhh’ out of the way first … then I’ll close on a happy!!

This is one of those days for me to stay REALLY busy to keep my mind from wondering. If I think Emma Grace’s “graduation” to Heaven seems like eons ago, her date of diagnosis seems even longer. Today would be that infamous anniversary date. Oh how we all prayed from the very start of this journey the outcome would be so much different than what the reality is. There are times none of it seems real … now, doesn’t that sound totally wacky??? A tough cookie to swallow and yet, God reminds me on every turn, He does not, repeat DOES NOT make mistakes.

One of those “perfect timing” devotionals of Max Lucado says:

WHEN GOD SAYS NO
“Whoever comes to Me will never be hungry, and whoever believes in Me will never be thirsty.” John 6:35

There are times when the one thing you want is the one thing you never get …
You pray and wait.
No answer.
You pray and wait.
May I ask a very important question? What if God says no?
What it the request is delayed or even denied? When God says no to you, how will you respond? If God say, ‘I’ve given you My grace, and that is enough,’ will you be content?
‘Content’. That’s the word. A state of heart in which you would be at peace if God gave you nothing more than He already has.”

Ok … so I’m like everybody else, especially my kids. They never like it when I said ‘no’ and neither do I. Again, that’s where I consciously have to put all my trust in God. I look forward to the day of complete understanding, complete peace and complete contentment that Mr. Lucado is speaking of. For today, (because that’s all I have to worry about) I’ll keep looking up to Him and surround myself with happy memories of our baby girl who brought so much joy to our hearts.

SO … here’s a happy memory that will hopefully, make your heart smile as it did mine. Jake’s grandma, “Jin-Jin”, sent this to us in Emma Grace’s ‘Pink Letter Memories”. Thanks Jin-Jin!! You are precious to us and your timing is priceless!! Let me preface this by saying, Emma Grace had her picks on the food. Actually, whatever it was that she would eat was just fine … as long as she was eating. (Now, would that sound like a Momma’s girl or what??)

Jin Jin writes;
“I can’t remember the exact date or where Emma Grace was in her treatment; I just remember she had a small growth of hair on that beautiful bald head. (this was actually her last week before her ICU stay)

A whole bunch of the Raborn Clan went to the Spaghetti Warehouse and we talked Trish and Emma Grace into coming along. Trish had already warned us that Emma Grace had eaten everyone’s butter the last time they were there. Sure enough, she asked everyone around her for butter. We were amused by this and all too eager to give her any amount of butter she wanted because we knew the value of getting our precious children to eat anything, no matter what it was.

Now for my favorite part of the story … I took Jake (literally, since he wasn’t walking at the time) and Emma Grace to the arcade area and let them play the game in which you try to “grab” a stuffed toy. Well lo and behold, they both won a toy! I was so excited for both of them since one child wouldn’t have to be disappointed. I really shouldn’t have been concerned about Emma Grace …

So here I am, trying to keep Jake on my hip and hold Emma Grace’s hand to get back to all the folks at the tables. When we approached everyone, Jake holds his stuffed animal up high and yells excitedly, “Look evwybody! Look what I won!” Naturally, everyone oohed and aahed. Being the attentive person I am, I said to Emma Grace to show off her animal, too. Everyone was waiting intently, but she never showed one bit of interest in the toy she was holding. Instead, she looked at a full cup of butter on the table and asked, “Are you going to eat that?”

What a treasured moment with a treasured child!”

Jin Jin, my darlin’, I got tickled again while typing this and remembering all the laughter that exploded from everyone and Emma Grace was serious as a judge! I thought we were going to have to pull Staci & Mo from the floor!!

Happy thoughts, Happy Hearts keep my days brighter. Thank you!

Thank you all for continuing your prayers for our kiddos! We love you more than you know. Keep looking up with us …

Only By His Grace - Trish

Friday, October 7, 2005 9:10 AM CDT

Hey Crew ...

Quick of prayer requests and updates on two of our babies -
Jake is doing chemo and from what I heard from him on the phone night before last ... he's definitely going strong!!
Please keep those prayers a rollin'. www.caringbridge.org/la/jakeowen

I spoke with Miss Christal's granma, Lois, this morning and the results of the scan yesterday were not good. Dr. Gajjar only relayed the brain images as he hadn't seen the spine, etc. He said both tumors had grown "substantially". Obviously, the current case study is out the window. They are talking about giving Christal a break to go home and enjoy some time there while feeling good and return in Dec for scans. Chris will be updating later I am sure but I sure want to lift our precious Christal to you so we can band together in prayer. http://christalinfo.servemp3.com

I have to keep reminding myself ... God does not make mistakes, I know that. Most of all, we know God already has this under control.

Please remember all the St Jude doctors and the nursing team who take this mission of finding cures to heart for our children.

We love you and thank you again for being the most incredible blessings from God!

Only By His Grace - Trish

Monday, October 3, 2005 11:53 PM CDT

Whew! What a weekend!! Almost a relief for Monday … did I really say that?!?!?

Before I get started I have to share this … as I sat down to type Jay Leno is just coming on. As with EVERYTHING in my life, Jay Leno always reminds me of Emma Grace. She LOVED watching him with me … in her words, “He has reawlly coowl hair.” Well, she’s right, he does have cool hair. Why that was one of the reasons she liked him so, I really don’t know. But as I was looking in the mirror earlier tonight, (which believe me, I don’t usually take much time to really ‘look’), I noticed that I am getting a serious dose of Jay Leno gray going on myself. Gee … go figure. Oh well, it’s just hair and if you don’t look really close, you might just think I spent good money to get this highlight. HA!! (Yeah, rrrrriiiiiighhttt!) Ok, so I had to pause before continuing this journal to watch Monday night “Headlines” (one of my favorites) and I realize once again, we both loved to watch Jay Leno together because we would always laugh at him. Yes, my heart smiles at the thought of her sweet laughter … she could belly laugh with the best!

This will possibly be brief (‘possibly’ being the key word … let’s just see). The weekend went by something like this …

Friday night was Sr High football – our Prairie Grove Tigers against the always feared Shiloh Saints of Springdale. Always a tough team to meet … but needless to say, Eli and I decided we wanted to see the match. So, Eli goes to take care of the horses and dogs before the game. While leaving the lot, he jumps the electric gate (about thigh high) and fails to land on his feet. (Yes, ever so graceful like his mother) He landed on his right hand under his 13 yr old growing boy body. Ouch! Well, we go to the game as we both think at the worst a broken pinkie or sprained hand. Besides, he sure didn’t want to miss the 5th Quarter student party after the game. What’s a little sprain, right?

The game was everything we had hoped for and then some … the Tigers beat the Saints in a huge upset 40-32 nail biter!! Eli was jazzed and headed off to 5th Quarter. When I picked him up around 11:30pm I realized my first thought of “sprain” was probably inaccurate. His right hand was now twice the size of the left. So, we spent the rest of the night (and early into Sat morn) in the ER with a broken hand. After Eli was given a “narcotic of sort”, he got quite comical when Dr. Ball came in to show him the x-rays. Eli, being somewhat of a drama king and a paramedic in his kindergarten years, he really needs to see these x-rays. “It’s broke, isn’t it?” Eli questions. And Dr. Ball shows him each position of each film and it seems to show the same break. Dr. Ball tells us it is at the “5th metacarpal”. Eli breaks in with, (in his semi-sedate-state), “Yeah, metacarpals are on your hands and metatarsals are on your feet, and these (wiggling his fingers) are my flanges.” I thought Dr. Ball and I were going to fall out. Ok, so maybe Eli WAS listening in science class after all.

They splinted his hand and sent him home with some pain meds. They referred him to the orthopedic doc which he sees Tuesday morning for a probable cast to keep things more stationary. Strange how it’s impossible for a 13 yr old boy to keep from knocking it around so much, eh? Now, he’s an official “injured player” and can’t even blame it on football … just on his lack of coordination and a short gate. I think he is already using it to his “babe advantage” so they will feel sorry for him and help with taking notes in class. (Oh, I feel my hair getting grayer by the minute!!)

Barney was in for the weekend and left out Monday morning for the east coast … I think he’s headed to Marlboro, MD, somewhere around D.C. Barney really likes working for Allen’s. He has always been a driver that sticks with his motto, “Don’t worry about the mule, just load the wagon.” He does seem to enjoy going different routes to different states … it’s the proverbial diesel fuel that runs in his veins.

We did get to make a visit Saturday night to see Jake Raborn’s daddy, Don and Uncle Todd while they were representing Louisiana’s great “VooDoo Bayou Salsas, Sauces and Marinades” in Fayetteville last week during the annual Bikes, Blues and Bar B Qs event. It was really good to see them and the great bike that VooDoo Choppers of Detroit built for their company. Eli was in literal “Hawg” heaven getting to mount up on the chopper, broken hand and all. (Oops, there goes another gray hair or twelve!!) Don and Todd were obviously ready for the curtain call … it has been a long hard week for them. Being a vendor at one of these events is some serious work but Don said it was great exposure for the company. It was really good to see them and hug necks – even though they were tired necks. They’re just part of our family … period.

Most of you already know but for those who don’t, Jake had scans last week that revealed more tumor in his lung. This certainly not what they (or us) were hoping to hear as Jake has been doing so well. It has only been 3 weeks since his last surgery so Dr. Davidoff did not want to go back in this quick for another lung surgery. They are starting more chemo – cisplatin and doxyrubicin today. Please keep Jake lifted in prayer as he starts yet another phase of combating this beast that continues to rear its head in his path. We believe, with the Raborn family, that God is in control. Jake is such a Light that shines for Jesus and what a blessing he is as well as his precious family. Please feel free to stop by to give them a note of “howdy” to let them know you’re lifting them in prayer. www.caringbridge.org/la/jakeowen

Also, Miss Christal is having her scans on Thursday, Oct 6th. These tests will determine the “what’s next” with her treatment. We pray Dr. Gajjar will see the chemo is doing its job. We all know the waiting is the pits … please lift Miss Christal, Chris, Drewie, Kylie Hope, Grandma Lois and dad, Todd in prayer as they “wait”. I know they would love to hear from you as well … http://christalinfo.servemp3.com

You all are the best and you continue to bless our hearts more than we’ll ever be able to relay to you. Please continue to remember all our St Jude kiddos. These children are amazing and God gives them incredible strength and courage. We love you all and thank God for you always.

Only By His Grace – Trish

PS … As I sign off, in tradition with Emma Grace and my late night TV, Craig Ferguson (another one of our favorites) has just finished his monolog. Of all things, he just told about his recent trip through Arkansas which he was amazed how beautiful the Ozarks is. (I think he thought we all sat on our porches playing banjos or something of the sort). Then … and THEN he talked about going to Memphis, staying at the Peabody watching the legendary ducks make their appearance at the fountain. Arkansas and Memphis … sounds strangely familiar, eh??? Mmmmmm … love ya!

Thursday, September 29, 2005 9:23 AM CDT

And it’s Thursday already … not sure how time slips away and yet stands still all in the same breath.

Hope this note finds everyone doing well today. Things are going right along … work for Barney and me are going just great, Eli is scrapin’ by at school (which we’ve had a little pow-wow about recently) and things are just goin’. Hangin in there and still struggling with the dust that continues to settle. Missing Emma Grace is a far understatement. And when I think I can’t miss her any more, I’m proven wrong.

God is gracious and He is certainly good. As I sat down to start my day this morning, I grabbed my “Grace for the Moment” devotional. You all know how I LOVE Max Lucado. But there is not a doubt in my mind Who gifted Mr. Lucado with such wisdom to share with all of us. This reconfirms what God obviously wanted to tell me …. Again. And you know, He is so good to remind us again and again and again if that’s what He wants us to hear, better yet understand. What is it we have said for the past 3 yrs?? He has it all in control … period. This really spoke to my heart this morning … I trust He wanted me to share it with you as well.

Here’s what Max Lucado says:

“GOD KNOWS WHAT HE’S DOING”
‘Surely, I spoke of things I did not understand; I talked of things too wonderful for me to know.’ Job 42:3

“It’s easy to thank God when He does what we want. But God doesn’t always do what we want. Ask Job.

His empire collapsed, his children were killed, and what was a healthy body became a rage of boils. From whence came this torrent? From whence will come any help?

Job goes straight to God and pleads his case. His head hurts. His body hurts. His heart hurts.

And God answers. Not with answers but with questions. An ocean of questions …

After several dozen questions … Job has gotten the point. What is it?

The point is this: God owes no one anything. No reasons. No explanations. Nothing. If He gave them, we couldn’t understand them.

God is God. He knows what He is doing. When you can’t trace His hand, trust His heart.”

I love this last sentence … I believe this statement is still on Stanton’s site and it has always been a reminder that even though we don’t understand, God does. We just have to trust Him.

Big thanks to everyone who supported Chili’s on Monday. Eli and I went after his ballgame and it was so wonderful to see all the peppers on the wall for Emma Grace. It is amazing that there were so many from folks we didn’t even know. I kept thinking about last year’s event we spent in Memphis with Laura and the Haynes’. Miss Jaden, her mom & grandmother in the booth behind us. Emma Grace and Stanton were WILD that night. Really … more WILD than usual. At the time I wondered what others around us thought about our unruly children. Guess what, I really didn’t care then and especially now. They were having fun and being themselves. Poor Laura only thought it would be a nice relaxing dinner after having to work the photo shoot at Chili’s for St Jude. (SMILE) Big heart smiles for that night and many others when the “KIDS RULE”.

Thank you all for your continued prayers. I know I have not been so diligent about updating, so thank you for bearing with me. The days are good … the nights, well, they get pretty long. But each day God leads us through is one day closer to Him … and yes, that sweet little curly headed angel I long to hold again.

Please continue to remember our many children who steal our hearts, brave their battles and continue fighting with a smile!

Only By His Grace – Trish, “Trusting His Heart”

Saturday, September 24, 2005 12:14 AM CDT

Good Morning to All!

Once you see how I have tried to “catch up”, you’ll know why it took me some time to absorb this week and put it to words. There is never a way to release what is locked into our hearts for you … but this would be my attempt. We love you all so much!

First, thank you all for honoring Emma Grace’s earthly birthday on Wednesday. We are overwhelmed at the response in celebrating her Pink & Purple day. I can almost hear Emma Grace and her friends giggling in excitement trying to catch each balloon which certainly would keep them busy catching them from all over the world. Truth being known, they were doing their best to see who popped the most … just an onery image of our sassy little angel not to mention her little buddy Stanton.

On the home front Angel Garden, there were better than 50 folks who joined with us and we released about 80 balloons. Everyone was wearing their Pink / Purple attire, we shared the beautiful ribbons that Ms Dee had made for the St Jude Trike a Thon with Emma Grace’s picture. The sight of so many was serene. Jake McBride had made a wonderful collection of music, we had prayer by Bro Grant after a few words of thanks and the reading of Aunt Judy’s beautiful letter (listed below) then the release of balloons was on. There is something very tranquil about watching the mass of her balloons symbolically floating Home. It was precious yet bittersweet to say the least. You know Emma Grace loves knowing we all made such a fuss over her special day!!

Barney was able to be home with us on Wednesday thanks to Mr. Ronald for swapping loads with him so he could be here for Emma Grace’s celebration. Thank you Mr. Ronald for your overwhelming generosity in taking the longer load for Barney! That was a very unexpected and loving offer.

I know I will unintentionally overlook someone so please forgive me upfront but there are some very special thanks we want to mention. Again, we are so thankful for the outpour of support and thank you so much for your endless love. You all are amazing!

Melanie Massey, better known as Jake’s Aunt Mo, turned her whole physical therapy clinic into an Emma Grace Birthday Bash, in West Monroe, LA. The pictures are incredible, MO!! If I can figure it out, I will post them on the website. I think they had as many as we did turn out. It was great to see Jake-Jake, Hayden, Hunter, Staci, Jin-Jin, your patients and staff and so many more with balloons poised for release. The whole Team was wearing their ribbons, pictures of Emma Grace were everywhere and the balloon lift off was breathtaking with the gorgeous clouds of light behind them. I couldn’t help but think it was a sign of God’s Light shining in approval of His love you all share with so many.

The Mississippi State Highway Patrol had their own lift off at the station house in Batesville, MS. Thank you Ms. Whitney, excuse me, aahumm, Officer Brownlee for celebrating with your officers.

Thanks to our family, the Haynes’, the Phillips’, the Loftin’s, Shug II and many others in Minden LA for their Fushia Pink celebration for Emma Grace. Tina, I know this day was just as hard for you as for us. Thank you all for looking up with us and hanging in there.

Brent Nason, his sweet brothers and family in Mathison, MS had their own celebrational lift off. Brent was a “big brother” to Emma Grace and we are so thankful for his wonderful good news of CLEAR SCANS!! A HUGE reason to celebrate!

Mimi Sharyn, Monica, Sarah Cwaire, Tucker, Hays, Bill & Patty in Cleveland, MS had a special celebration at Emma Grace’s home-away-from-home church before their services. Mimi called to tell me her van was full of Pink & Purple balloons!

Ms Dee, Ms Leslie, our niece Linnie and her classmates at Glenwood Primary School in Glenwood, AR had their lift off during school. Ms Dee attached Emma Grace’s picture as well as the reason for these special balloons in hopes of seeing how far the balloons would travel. Ms Dee the special scrapbook arrived with the marvelous pictures of the St Jude Trike a Thon, the Birthday Balloons and the newpaper article. What a treasure, just as you all are! Thank you!

We receive many sweet guestbook entries from Carrie in Houston. Bless her heart in the midst of being evacuated to Dallas from Hurricane Rita, she wanted us to know that her balloon release would be late from Dallas. Thank you for remembering our Angel in the midst of your literal storm!

We understand many of our St Jude Caregivers was also in Pink & Purple on Wednesday. You all are forever in our hearts!! Thank you!

Miss Chrwistal, you are the Bomb-Diggity Baby!! You, and only, you my love would wear the pink boa on Wednesday! Christal, Kylie Hope & Chris had their own special balloons to send to Emma Grace. I know Emma Grace loved seeing the balloons from her St Jude Sista!!

Rev Craig, Nancy, Laura, Janie, Janice, Dr. Ray, son Micah & Emma Grace’s special friend, Alexandra met at Hope. Nancy made sure that even though we were miles apart that we could “be there”. She called us so we could hear Rev Craig and his compassionate words. He read Emma Grace’s song which blessed our hearts as her song always brings comfort. It was so exciting hearing them in the release of the balloons. Nancy squealed as the Strawberry Shortcake balloon took off by itself and led the way. Gee … go figure. They stood in the stillness of watching the balloons ascend. Nancy said there were two balloons that lingered as if Emma Grace & Ali were letting us know they are forever sticking together.

To “A Jake Owen Believer”, the guestbook entry was AWESOME! You are incredible yet very discreet. One day, maybe you will reveal yourself. Your work is such a comfort. Thank you!

Once again, I know I’ve probably left someone out … please know we thank you from the bottoms of our hearts for your love and prayers in remembering Emma Grace as well as us on her earthly birthday. I continue to believe there is no way to imagine how completely perfect her days are each and everyday. Best of all, God has it worked out where that lasts forever. Oh how we look forward to the day the be with Him and reunited with Emma Grace.

I’ll close with a very special thank you to a “Silent, Gentle Giant” and his Team who so lovingly and generously donated a special birthday gift to St Jude in Emma Grace’s honor. She will have a wonderful and unique plaque displayed in the halls of St Jude that reads, “ To Celebrate Emma Grace Hampton, Sassy Lil Founder of the Tater Diggin Dance” You all never cease to amaze me … and the words just don’t come for what we feel in our hearts for you. Yes, Trish speechless … thank you, you will never know how you bless our lives.

Hope your weekend in full of His Sonshine. You all are such wonderful gifts from God and we are ever thankful for your prayers and most of all, your love. Please continue to remember all our friends who continue in their daily fight. Also, please remember the evacuees and all those in Rita’s path.

REMEMBER – MONDAY, SEPTEMBER 26TH IS CHILI’S RESTAURANT FUNDRAISING DAY FOR ST JUDE!!

Only By His Grace – Trish

Leave it to my sweet Aunt Judy for saving her pink letter for Emma Grace’s birthday. It is perfect and of course, God’s timing is always perfect. Thank you, Aunt Judy. We love you! An excerpt from her precious birthday letter …

“Thanks be to God for sending Emma Grace into our lives five years ago. What a wonderful blessing she was to all who met her! She was such a joy! She touched so many lives and softened so many hearts in her short lifetime. We must hold on to those precious memories.

The last time she came to stay with me, before going back to St Jude at the end of July 2004, I will never forget the sparkle in her eyes and the laughter in her voice. She was such an inspiration to me. Before taking her and Beau to the movies, I invited Emma Grace to help me bake a batch of cookies. We had such fun that day! I remember telling her what a good helper she was and asked her if she ever helped her mom cook. She assured me that she did, and then proceeded to question me about my mom and where she was. When I told her that my mom had died and gone on to heaven, she quickly replied, ‘that’s ok’, as if to assure me that everything was just fine. What wisdom comes from the mouth of babes, if we only take the time to listen.

Those words keep ringing in my ears, ‘that’s ok’. So Wednesday, when you are releasing the balloons in her honor, just remember what good Hands she is in now, and think of her telling us ‘THAT’S OK’. Hugs & Kisses, Aunt Judy”

Wednesday, September 21, 2005 5:51 AM CDT

Good Morning to All ... Pink / Purple Day!!

We've so emotions running around already this morning but it's hard not to envision Emma Grace is having the best of times - doing her original tater diggin' dance all over Heaven's street of gold today and everyday.

Our longing and missing her continues with each and every day. As I lay down to sleep last night talking to God, I had the overwhelming feeling of how much I love my baby girl. I told God "if I love her that much, I know you love her more". As we did our best to love and care for her during her brief time with us, it is so hard to get my head around, God loves her more. Yes, hard to get my head around but my heart is there.

Thank you all so much for the many, many responses to honoring Emma Grace on her earthly birthday today. I know our celebrations can't even come close to what God has in store for her everyday. But it makes my heart smile to do something for her and the many wonderful memories of her continue to help us thru each day. We are ever amazed that God has blessed us with such wonderful friends who stand with us no matter what falls in this journey. It blesses our hearts more than you can know that God sent Emma Grace to touch your life. He sent her here with a very specific mission. And to quote Bro. Craig, she did it well and she did it fast. I know she taught us all what unconditional love is all about, all the while never giving up, smiling and dancing all the way.

Have a blessed day and please know we can never thank God enough for His many blessings, especially sending us you! Looking forward to the day of seeing Jesus face to face - I just imagine there will be a curly headed little girl standing by His side, holding His hand, welcoming us Home. What a beautiful thought in my heart today. We love you!

Only By His Grace - Trish

Happy Birthday, Sweet Baby Girl who now has Heavenly wings. Sitting on the lap of Jesus with no worries at all, seeing His priceless love in her very presence, singing, praising and dancing all day long.

Saturday, September 17, 2005 2:02 PM CDT

It is Saturday … and the weather is beautiful!
Thank you Lord for the much needed rain this week!!

I’m in the midst of accomplishing ‘domestic duties’. Why is it that laundry doesn’t know how to clean themselves??? I surely thought technology had arrived. Guess not just yet. Eli is weedeating and sprucing up around the yard. Barney has made the grocery store run and getting ready to cook some ribs on the smoker. He is a MUCH better cook than I and I love having him home all weekend!!

On his way home from Alabama this week he got a special treat of getting to meet Tonya Nason, Brent's mom, for supper while traveling through. She sent him with two HUGE bags of homemade cookies that were beyond scrumputous! She's a doll ... she went to special effort of accessorizing the goodies in cellophane and dark purple bows. We are so thankful to hear Brent's CLEAR scans!! God is so very good!! Yes, ALL the time!

Work for Daddy & Momma are going just great. I think that I am getting WAY spoiled as Marianna cooks breakfast about every morning and sends a hot plate down to the office for me. AND when time allows for her to cook lunch, I get the same spoiled treatment. She is quite the cook and such wonderful friends that we cherish.

Thank you for the tremendous response to Emma Grace’s birthday! You cannot know how it blesses our hearts that you are joining us in Pink & Purple Week for our little Angel Girl. She would be so proud! Don’t you know God has the bestest birthday parties imaginable?? I can’t even get close to understanding the overwhelming praise and celebrations that occur daily, not to mention birthday celebrations. Then again, we are the ones that calculate birthdays by years … in Heaven there is no time, so I imagine everyday is a celebration.

I’m going to be lazy and do some ‘copy & pasting’ …

September is Childhood Cancer Awareness Month and on September 26th, Chili’s is having their annual St Jude fundraising event where all proceeds for the day that Chili’s takes in nationwide, goes to St Jude. Of course, you know where we plan to be on the 26th. Thank you for all the peppers that have been sent to us in Emma Grace’s honor. They are just precious!

Also, next Wednesday is Emma Grace’s birthday. I have debated whether or not to even mention it but I’m going to for a couple of reasons. First, I want to invite you to wear pink or purple ribbons with us primarily for the Childhood Cancer Awareness month. Their choice of ribbon color is gold but I figure Emma Grace has the gold halo covered so I’m sticking with her colors. I have frequently been wearing my Angel Ali pin with the pink & purple ribbon that I wore for Emma Grace’s Life Celebration service. Whatever it takes to continue our mission of spreading the word about childhood cancer that we pray is defeated soon. Eli is even planning to wear his purple shirt and pink ribbon to school next Wednesday for Her day. You know how she would love for us to make a fuss over her, so it’s something I feel I can “do”.

One more thing, we are planning a balloon lift off at the Angel Garden at 6 pm. Anyone who wants to come is welcome and obviously, Prairie Grove is not "around the corner" for lots of folks so if you would like to send a balloon off in honor of Emma Grace, feel free. Barney and I had first thought against it but then I remember the day we let Angel Stanton’s birthday balloons go outside her hospital window while she watched from her bed and it was one thing she actually took joy in that day. She was one the phone telling Chris, Christal, Lois and I which ones to let go first and which one she wanted to keep. (Imagine Emma Grace calling the shots from her St Jude suite) So, I pray we can share in that same spirit – doing something she loved for her birthday, just as she enjoyed doing something for her forever friend, Angel Stanton.

Tina and I were talking on the phone this morning and were recounting the story of Emma Grace's dictativeness with Stanton's birthday balloons. The only balloon she wanted us to keep was a musical balloon that played "Sugar Pie, Honey Bunch". What a perfect song for Stanton and Emma Grace.

We love you all and thank God always for sending us you! Please continue to remember all our St Jude kids.

Only By His Grace - Trish

I rarely go back to the past journal entries but I wanted to find this ... I wrote this when we found out Emma Grace had relapsed in March 2004. She loved this book and we read it over, over, over and over again. Her way of ministering to us at such a young, tender yet wise age.

Journal Entry Written March 26, 2004:

Emma Grace's new book "My Promise Rainbow ... And the story of Noah's Ark" given to her by our dear Aunt Judy has several flaps and on each page is a bible verse. The story is symbolic of our daily storms as well as sharing the story of Noah & the ark. The purple page reads:
"Purple is for the
Storm that grew
In scary clouds and
Wind that blew.
But God remembered Noah, who
He gave this special promise to:
A storm is coming
But I'll be with you.
I'll keep you safe.
My promise is true."

The verse under the purple flap reads:
"God said, 'Don't be afraid. I am with you'." Isaiah 43:5

Whew ... profound in Noah's day, profoundly sobering during her relapse period and still speaking to us today. God's word never fails. Amazing ...

Tuesday, September 13, 2005 8:20 PM CDT

Howdy to All!

First, Jake-Jake is rocking right along after his surgery. I talked to Staci this evening and she said he has had a really good day and may get to go home-home on Monday. Is God good or what?!?!? Please continue to lift him in prayer as God continues to heal his little precious body. www.caringbridge.org/la/jakeowen

Also, there’s a certain St Jude Sista (who will remain nameless) who is NOT celebrating a birthday today, per her request. So, whatever you do, DON’T go to www.caringbridge.org/la/stanton to wish her Happy Birthday … you can stop by for a “just dropping in for a howdy” if you like. Just don’t tell her I let the cat out of the bag.

Last weekend was absolutely wonderful! At last, we got to meet Sweet Ms. Dee who works so hard to take care of children, advocate for their best interests and who has been a huge supporter, not to mention precious friend to our family. She had once again went above and beyond to make everything so perfect for their St Jude Trike A Thon. She had made these adorable pink, purple and gold ribbons each with Emma Grace’s picture laminated on them for everyone to wear. She also had a priceless gift for us, a picture frame (with Emma Grace’s picture already in it) that says, “When someone you love becomes a memory, the memory becomes a treasure.” Thank you Ms Dee & Crew for making our weekend so perfect and for taking care of our St Jude family!

We enjoyed our time with Barney’s brother, Marvin, Lee Ann and niece, Linnie this weekend. Linnie had wanted “Aunt Trish” to go swimming with her in her pool so of course, I packed the whalesuit. Needless to say, swimming on a crisp morning in a pool that hadn’t warmed in the day’s sun was not what we had planned but Eli & I DID get to “swim” in Linnie’s pool. (Eli got totally wet of course but Linnie and I whimped out!)
Linnie rode the most laps in the Trike A Thon for her Emma Grace. She has grown so much and I couldn’t help but think she had little Angel wings pushing her along as she rode.

As most of you know, September is Childhood Cancer Awareness Month and on September 26th, Chili’s is having their annual St Jude fundraising event where all proceeds for the day that Chili’s takes in nationwide, goes to St Jude. Of course, you know where we plan to be on the 26th. Thank you for all the peppers that have been sent to us in Emma Grace’s honor. They are just precious!

Also, next Wednesday is Emma Grace’s birthday. I have debated whether or not to even mention it but I’m going to for a couple of reasons. First, I want to invite you to wear pink or purple ribbons with us primarily for the Childhood Cancer Awareness month. Their choice of ribbon color is gold but I figure Emma Grace has the gold halo covered so I’m sticking with her colors. I have frequently been wearing my Angel Ali pin with the pink & purple ribbon that I wore for Emma Grace’s Life Celebration service. Whatever it takes to continue our mission of spreading the word about childhood cancer that we pray is defeated soon. Eli is even planning to wear his purple shirt and pink ribbon to school next Wednesday for Her day. You know how she would love for us to make a fuss over her, so it’s something I feel I can “do”.

One more thing, we are planning a balloon lift off at the Angel Garden at 6 pm. Anyone who wants to come is welcome and obviously, Prairie Grove is not "around the corner" for lots of folks so if you would like to send a balloon off in honor of Emma Grace, feel free. Barney and I had first thought against it but then I remember the day we let Angel Stanton’s birthday balloons go outside her hospital window while she watched from her bed and it was one thing she actually took joy in that day. She was one the phone telling Chris, Christal, Lois and I which ones to let go first and which one she wanted to keep. (Imagine Emma Grace calling the shots from her St Jude suite) So, I pray we can share in that same spirit – doing something she loved for her birthday, just as she enjoyed doing something for her forever friend, Angel Stanton.

Thank you for your continued prayers for our many families. There are several prayer requests that I know I am forgetting to mention, but God knows each and every one. We love you all more than you can know and thank you for continuing to walk in the journey with us. You are true gifts from God.

Only By His Grace - Trish

Thursday, September 8, 2005 5:53 AM CDT

Hello to All!

Just a quick note before I head off to work ...

We seem to be doing ok, just hanging in there taking each day as it comes. We find ourselves talking about Emma Grace more and more, remembering sweet memories. We went to the Clothesline Fair on Monday (arts & crafts fest as well as kids of all ages square dancing). Eli was "smoozing" after a girl ... he says they're just friends. (Ok whatever!) We watched the first 3 groups dance which were the 4 - 5 yr olds. They were adorable. And selfishly, I couldn't help but think how Emma Grace would be right in the big middle of them, throwing the tater dig into the choreography somehow. I know she is dancing happy and free as we speak. We just miss her more each day.

Eli has another football game this evening. I think they still have enough adrenalin from last week but I hope they don't over confident themselves. It is another home game against West Fork. They are the Tigers as well ... we'll see which Tiger stands at the end of the night.

Barney is on his way home from Florida. Hopefully, he will be home this evening. Even though he's been gone all week, we still are seeing him more often.

Eli and I (maybe Barney) are heading to Glenwood, AR Friday for the St Jude Trike A Thon. They have gone to alot of hard work to make this a success and in honor of our girl. Please pray for us as we travel and for all the people who are working so hard. Our niece, Linnie, is riding for her buddy, Emma Grace and is actually riding Emma Grace's bicycle that we gave her after Emma Grace went Home.

Jake's surgery got postponed until Friday as he had a sore throat and they did not wish to complicate things by intubating him for surgery. Pray, Pray, Pray.
www.caringbridge.org/la/jakeowen

Brent Nason is having his MIBG today and we are looking forward to hearing the "ALL CLEAR" from them. www.caringbridge.org/ms/brentnason

Please continue to remember Chris Rasco as he gets started with his radiation treatments.

We love you all more than you can ever know. Thank you for your continued prayers for our families who bravely walk each day in the fight.

Only By His Grace - Trish

Monday, September 5, 2005 8:41 AM CDT

PRAY PRAY PRAY ... JAKE IS HAVING HIS LUNG SURGERY TODAY (TUESDAY). THANK YOU!! Love ya!www.caringbridge.org/la/jakeowen

Good Morning to All!

We trust you are making the best of your long weekend. Barney came in wee hours Saturday morning and left out late Sunday afternoon. We are so thankful to have him home so much. I have kept one eye glued to CNN while trying to accomplish "domestic duties" (ugh).

Eli's ballgame Thursday night turned into a thriller in the last 28 seconds. We intercepted a pass and ran it for a 85 yard touchdown winning the game 12-6. Eli didn't play but you couldn't tell it by the way he was bouncing off the wall as all the boys were. That just shows they are a true team.

As exciting as the game was, I got a call during the game that scans revealed Jake has a visible tumor!! Most would think we've lost our minds being thankful for a tumor. We're thankful it finally showed up so it can be handled and removed. Amen! and Amen! He will be having surgery on Tuesday to remove it. The doctors were pleased that it is easily resectable. Please pray for Jake as God goes before him getting everything lined out in the OR for our little man. www.caringbridge.org/la/jakeowen

I just got off the phone with Doris, Chris' mom, as they are leaving for St Jude in about an hour. She said she is anxious and scared but yet relieved they are going to St Jude. Please lift them in prayer as they get all the preliminary testing done, get settled in at the Grizzlie's House then our dear Ronald McDonald House for 6 weeks. Chris will have 6 weeks of radiation then get to come home for a break. He will return for 4 months of chemo. He has quite the road ahead of him but God has it all worked out. Hopefully, Chris will have a website set up soon as I talked with Doris about it this morning. I will forward it to you as soon as I have it.

We have an inactive military base Ft Chaffee in Ft Smith, AR which is about 50 miles south of here. They have received 4000 evacuees so far. Yesterday at church, Bro Grant announced the Baptist Church Camp in Siloam Springs is on standby for about 900 evacuees. We are geared to help out our neighbors who are in need. This is certainly not a weekend ordeal. These folks are going to need assistance for some time ... the recovery will be long term. Please continue to pray for all the hurricane victims whose lives have come to a screeching halt and who need compassionate help.

I sat in Sunday School yesterday listening to the lesson on conversion. James, Jesus' brother, went thru true conversion / change by going from initial unbelief that Jesus truly was the Christ, Son of God to a faithful servant. It reminded me once again we are nothing but God's servants and it touches His very heart for us to be willing to do His work.

I actually sat without meltdown for a change. I did recount seeing a sweet little curly-headed, paci in mouth and purse in hand waiting for her Momma and Daddy to be finished with class. Sometimes Emma Grace would just stand by the door looking in or come on in. Often she would hug Beetle (our teacher & friend) as she passed him. At the time I would think she was being a bit too distractful but now, it is precious memories of her being so loving to those around her.

We trust your week will be filled with His Sonshine. We are ever thankful for your love and prayers not only for us but our many families who continue their battle and those whose angels have gone Home. You all are true gifts from God - we thank you and we love you!

Only By His Grace - Trish

Thursday, September 1, 2005 10:13 AM CDT

GOOD MORNING

Last night as I sat watching footage from the gulf coast I started tearing up. Eli ask me whose web site I had been reading, I informed him that it had nothing to do with a web site this time. I ask him if he realized how much hurt and despair was going on around our country right now. It is been a very hard road for all concerned with our Emma Grace but at least we know where she is. There are families all over the country that have been separated by Katrina that have no idea where their loved ones are at or if they are even alive or dead. I know it goes without saying that open hearts and lots of prayer are going to be needed for a long time.

The new job is great, I left Sunday afternoon and as of this morning I have slept at home two nights. I will leave out this morning and be back home tomorrow night. One of the advantages of driving for a company that hauls their own product is that you know that you are coming back to get another load.

Mr. Eli was all pumped up this morning; he has another football game this evening. Needless to say the jr. high boys have been stepping high since last week’s scrimmage. It is good to see Eli getting to have fun
and have a good outlet for his frustration.

Momma is burying herself in work. I am so glad that she likes her job as much as she does; she still has her moments as we all do. The company she works for moved into their new office last Saturday. I was beginning to wonder what she had volunteered me for by the time all of the office furniture had been moved in. It was good to see the smiles on the faces as they where trying to organize everything. They seemed to be getting more settled in and finding things. No matter how near or far, a move is a move.

(Barney had to leave out so he asked me to finish update … tag teamin’ it this morning!)

Eli and I were driving in the car the other day (which is seldom) and I brought his attention to all the stickers on the back passenger window that Emma Grace so lovingly decorated. I guess they will fade right there because I’m not taking them off nor will I let anyone. Then while we were driving the pickup home yesterday, I pulled down the sunvisor to shield my eyes. Eli asked if Sissy put that sticker up there. I had forgotten it was even there and probably have not seen it in months. It’s one from Wal-Mart – you know the one, the Smiley face. Gee, imagine her sending us a smile. I can assure you, it was much needed and so appreciated. Emma Grace is everywhere we look. I know most of it is because we so miss her but also I think God reminds us of how much she loved everything and most importantly, everyone. What a lesson for me again from our 4 yr old.

Next Friday, Sept 9th a St Jude, Ms Dee in Glenwood, AR, has organized a 2nd Trike-A-Thon in Emma Grace’s memory. As it stands right now, I plan to attend in her honor. At last, to meet Ms Dee after almost 3 yrs.

Special Prayer Requests:

St Jude families in the New Orleans area, Mississippi areas without power and damaged property. As always, our dear St Jude is stepping up to the plate for the families who are at Memphis with damaged homes as well as the families who are in the damaged areas – they are trying to get them housed in Memphis. As if cancer isn’t enough, they do not need the worry of housing much less the exposure to the conditions this horrible hurricane has brought.

Also, Hank Haynes, Stanton’s uncle, is headed to New Orleans this morning to combat the lootings with local law enforcement. Several units have been called in as this is a very dangerous situation and continues to grow. It is sad efforts are having to be placed to the looters instead of immediate rescue of the stranded. Please remember all the law enforcement and our armed services who are going in to restrain this situation.

Mr. Jake as he has his scans today and tomorrow! Pray, pray, pray!
www.caringbridge.org/la/jakeowen

Chris Rasco & Doris as they leave for St Jude Monday to start his treatment for medullablastoma.

Christal & family as they are getting to be home-home for a break during the holiday weekend. Please pray for their continued strength as they brave their days.

Brent Nason as he is having post treatment followup scans. www.caringbridge.org/ms/brentnason

We have been so very blessed to have the best friends and family who are faithful to pray and be at our side. We love you and thank God for your being above and beyond supporters!

Only By His Grace – Daddy Barney & Momma Trish

PS Barney just called to tell me that his load this afternoon is to Tupelo, MS and was told to be prepared for the news crew. His load is for the Red Cross Hurricane Relief. Do you think maybe, just MAYBE God already had that worked out for him so he could help in some small way?? God certainly is good!

Tuesday, August 30, 2005 6:33 PM CDT

Hey Crew ...

Just wanting to drop a note of hello to all and let you know we are doing ok ... just one day at a time. Still plodding along - as Dr. Ray would say. I'm just not "up to par" so please forgive me for the short note.

Barney started his new job on Sunday which we are so thankful for. He's on round two today. Eli is doing ok, he so misses his sissy yet we always find happy thoughts of her which make us both smile. They had their first football game last Thursday and won 48-0. I sat watching Eli and knowing his biggest fan, not to mention, cheerleader was cheering him on. She is such a girly-girl and always wanted to be a cheerleader. (I KNOW she DID NOT get that from me!!) I just imagine God is letting her cheer for Bubba all she wants!!

We love you all so and thank you so much for your contininued prayers. Please remember Jake as he is having scans Thursday. Please pray the docs can see something clearly in order to deal with it and move on. www.caringbridge.org/la/jakeowen Also, Brent is having his followup scans post tx. Please pray all is still CLEAR. www.caringbridge.org/ms/brentnason. We have a friend who I went to school with - Doris (Doss) Roberts, her son Chris Rasco, has been diagnosed with medullablastoma. Please pray for them as their journey to St Jude begins on Sept 6th. We all know too well how frightening this time is. I'm so thankful God has worked out for Chris to see Dr. Gajjar.

Thank you for always letting God's light shine thru you!

Only By His Grace - Trish

If you get a second, check out the great collage that a CaringBridge friend emailed us. It's precious!!

Thursday, August 25, 2005 11:52 AM CDT

Where do I even begin? Chris and Christal were here this last week end and I know it was very difficult on Chris; she made the statement on Saturday that it felt so different being here without Emma Grace. She said she kept waiting for Emma Grace to come running around the corner from the kitchen. I had to bite my tongue to keep from saying, now you know what we go thru every time we walk thru the door. It was a good weekend spent with friends that had to part way too soon. Be sure and remember to pray for Christal as she is now doing another type of chemo as the last one did not work. She is now doing chemo that will cause her to loose her hair and make her very sick. We had all hoped that Christal would be spared from having to go thru these horrible side effects. When the girls met Marvin and I in Mena Friday night I pulled a boo-boo, I grabbed my bag out of Marvin’s pickup and put it in our pickup then proceeded to walk past Christal who had the window down waiting on Mr. Barney to give her a hug and say hello. She had been waiting all evening to see me and I just flat blew her off. When I realized what I had done I went and tried to make up for it, Christal being the loving sweetheart that she is forgave me for it. It was good to get home where she could get out of the pickup and crawl up into my lap and snuggle up for some much needed lovin. From day one of meeting Christal she has always snuggled with me. Many times I had Emma Grace on one side and Christal on the other; it does not get any better than that. http://christalinfo.servemp3.com/

I can never leave out on the truck without remembering what Emma Grace always said to me when I had to leave out when we were in Memphis. I would tell her daddy had to go to work and she would look at me and say that’s okay daddy, you will be back in a few days. She knew how to make leaving a lot easier on her daddy. She had an understanding of life that never ceases to blow my mind. I am not so sure my dispatcher understood things as good as Emma Grace did. I was forever asking for a load back to Memphis, I would leave out on Monday and I would start asking for a load to Memphis on Tuesday. I never leave the Angel Garden without having to say; daddy will be back in a few days baby girl.

Please remember Mr. Jake, he has landed in the hospital with chicken pox. As his immune system is low he must stay in the hospital for a while. his web site--caringbridge.org/la/jakeowen

God is good; a very profound statement. As I pointed out to some of our friends in Louisiana God did not have to let us wake up this morning, give them healthy children, or allow us to have a job to go to. It is that very statement that we live by and by HIS strength we are crawling along on our hands and knees waiting to learn to walk on our own two feet again. Thank you for all of the prayers and all of the encouraging words.

GOD IS GOOD
ALL THE TIME

Angel Emma Grace’s Daddy

Sunday, August 21, 2005 8:28 AM CDT

What's the deal?? I'm on this crazy schedule of updating on Wednesdays and Sundays?? It's my guilty conscience of God reminding me on Worship days of my being laxadazical!

Big news and answer to an unspoken prayer ... Barney was contacted by a company, close to home - 15 minutes away, mind you, to come talk about working for them. It's Allen's Canning Company and he's hired!! He'll be driving still with really good benefits, home on the weekends and hopefully, at least once during the week!! Can you tell we're a bit excited?!??! Tango has been wonderful to us and Barney got to speak to Mr. Buckner with Tango to tell him of the opportunity and he was very supportive. He told Barney if for some reason the change did not work out they would be happy to put him back to work. It was one of those answers to prayer that we didn't even know about. We go to church with a dear family that talked to Allen's about Barney and we didn't even know about it. That's God working behind the scenes and taking care of us. Thank you Lord!

The Black & Gold football game was good ... Eli played well. Being an 8th grader means the 9th graders RULE in Jr. High but he's having fun anyway. He has gotten SO big! and looks HUGE in his football gear. Nana & Nanny worked cooking peach cobblers for the Pie Auction Friday night that supports the Booster Club.

Eli got to go with Lumpy Baugh aka "Wumpy" running the milk route on Saturday. That boy, he's ALL about the TRUCKS just like the rest of the family. He and Lumpy had a great time. He got to spend the night with Denise & Lumpy Friday night which was an extra treat.

OK ... Guess WHO rolled into NWA Friday night?!?!? Christal, Kylie Hope & Chris!!! Talk about needing to see my sista! She definitely did not need to stay in Memphis for the weekend. Drewie moved home on Thursday, not to mention that Christal's scans were UGH this week so they needed a get away. We are so thankful they decided to come. As soon as they rolled in, I was leaving the football game, met them and we loaded up to go pick up Barney in Mena at 1 am Saturday morning. Chris and I got some immediate windshield time that was much needed. Bro Marvin went to Shreveport to get Barney and bring him to us. It was a well greased travel plan that worked perfectly. Thanks so much Marvin for going literally the extra mile to get our Daddy-O home.

Christal got to ride our horse, Flit, last night which was a big highlight for her as well as for us. We've hung out at the Hampton House with no plans in sight except to relax and it's been so nice. Of course, I'm not looking forward to the "exit" but hopefully, it won't be so long between visits next time.

Okey dokey, artichokie ... it's time for me to get in gear for Sunday School. Thank you all so much for your incredible friendship, your love and especially prayers not only for our family but all our sweet families. God is so amazing to cover all the bases to take care of us even when we don't think we need anything. You all are wonderful and we are ever thankful to Him for you!

Only By His Grace - Trish

OK ... just tried again to "Post the News" but am very unsuccessful AND I'm running out of time this morning. I'll work again on it later SO ... you're still in the dark on this for now. Bear with me ... it'll keep you guessing. (smile) love ya!

Wednesday, August 17, 2005 2:48 PM CDT

(You might want to grab a cup and sit a spell for this one ...)

I wish I could say that I’m going to get “better” about updating everyday … that is my objective. You all are so sweet to bear with us and so faithful to keep touching base with us. Let’s play catch up … mark, set, go!

Friday night was called Cuzzins’ Night. My sweet cousin, Nancy, (the gifted singer/songwriter) had arranged for cousins Janet, Joyce – who are twins, my age, who I was baptized with many moons ago – to meet us Jose’s for eats. Then we all headed to our house for the super treat. Janet is a massage theraptist. NEED I SAY MORE?!?!?! Oh my … that girl has got some serious stress busting hands. I’m not one that even wants you to look at my feet much less touch them and she even gave me a foot massage. We had a grand time and the laughter was almost as therapeutic as the massage. We just don’t get together enough but when we do … look out!! We certainly make up for lost time. Thanks Galz … it did my heart good to spend time with you again!!

It was SO wonderful to have Barney home for a whole weekend. That could spoil us quickly. Eli went to a weekend church camp in Siloam Springs and had a great time. Barney and I took advantage of actually having grown up time so we called Beetle & Helen Bailey for a road trip. We saw parts of NE Oklahoma that we’d never seen before and it was a beautiful drive. There were watershed lakes hid in the hills way off the beaten path, lots of deer and storm clouds rolling in behind the sunshine which made it for a gorgeous drive. After going as far west as the Tenkiller Lake dam, we headed back and ate supper at the Cookson Smokehouse which is one of our favs when in that neck of the woods. The last time we went on a road trip with the Bailey’s was when I was pregnant with Emma Grace. I think we were overdue for needing to spend some windshield time together. We had a great time Beetle & Helen. We are ever thankful God gave us such wonderful friends like you!!

Needless to say, there were lots and lots of Emma Grace stories. The Bailey’s loved her and she certainly loved them. She sat with them every Sunday that we were at home in church. That started from the time Emma Grace was born as I play the organ during services so Helen usually “won” on getting to hold the baby. As she grew, she seldom went to the nursery … she’d always stay with Helen like a big girl in church. I DIDN’T say she was always quiet … but she usually settled down. Sing … oh my word, that girl would sing – whether she knew the song or not. She helped Clark, our song leader (Beetle & Helen’s oldest) and would even say “Hi Clark” in the middle of song service. She learned real quick that once congregational singing was over, Beetle would come out of choir loft and stand by her. The “quick” part comes where she knew it was time for the offering to be collected. She’d have her hand out wanting “dollwers” from Beetle before he even got back to his pew. Every pastor’s dream … a cheerful giver. Never mind the fact she’d “take” from Beetle so she could “give”. (smile)

Having a weekend full of memories sure makes for lots of “soaking up” time afterward. The missing of Emma Grace just seems to grow. If there is one thing that never ceases to amaze me it that when I get deep in the “midst of the muck”, that’s when God sends a good dose of His loving Sonshine – never fails. And of course, it is when I need it the most. He knows that … why do you think the timing is so impeccable?? He just DOES NOT make mistakes … period.

Here’s how this week started and I’ll tell you what I’m getting at … Monday was one of “those” days when I woke up missing Emma Grace more than ever. I was up in plenty of time to make it to work and about the time I thought I was “ok” (whatever that is), I would fall apart again. It was like herding water … literally. The huge void, the raw reality was almost more than I could take. The last thing I wanted was to show up to work in pieces … nice thought but that was out of the question. I am so thankful for Christian friends to work for … Marianna knew at first glance this was probably not one of my better days. Her first comment was, “I don’t begin to know...” She came to me with love, hugs and support but most of all, had prayer with me.

When folks ask what they can do … I really don’t know except pray. More times than not I don’t know what to do so I sure can’t tell anyone else. One thing is for sure … we gotta keep “doing”. One foot in front of the other, just a step at a time. Everyone grieves differently ... it's ok to be just "ok" or "not ok" or whatever the emotion is at that moment. When the dust settles we basically have 2 choices ... get in the ditch and stay there or pick up whatever pieces we have left and go on. Not that we have to like it or that it's not going to hurt or that it will be anything close to easy ... we just have to go on.

My brother, Chuck, and I were talking yesterday evening about everywhere he and Kellye turned in K-Mart on Sunday, they saw Emma Grace - things she loved, things she would have insisted she "needed" (yeah right), you name it, Chuck said she was everywhere. I reminded him about my first
visit to Target ... same thing ... (I’m still not sure why Target didn’t move the Dollar Spot or the little girls clothes to the back of the store that day. Did they not know I would show up that day??? (smile) ) I have conditioned myself to “look at the clouds” as Tina and I did on vacation when something would be too much of a reminder. So, I’m buying groceries Sunday afternoon. I went down the soup aisle … sounds pretty safe right? Wouldn’t you know that all of a sudden the little boxes of chicken noodle soup packets with Clifford on them jumped out at me?? Ok, I think the meltdowns are getting to be a bit much when it’s over chicken noodle soup!! I really don’t think it was the soup as much as it was Clifford AND Emma Grace just had to have that particular one when she and I visited the grocery store the day before she went into ICU.

Then later on the way home I reminisced of a trip to Hobby Lobby aka "Yhobby Wobby" in Emma Grace's terms. Laura made the "bead" run with us one night and I go down one aisle lost in the wall of beads. I look up to see Emma Grace slowly rolling by the end of the aisle, ALONE, cackling to the top of her lungs as Laura would push her past my aisle. It looked as if Emma Grace was just "passing by". I'm not sure who was laughing the loudest or who the biggest kid was ... I think Laura aka "Waura" came in "Runner Up" as Emma Grace was the winner by a smidgen. That was the night Emma Grace told us we just needed to have “girls night”. Where in the world did she hear that???

Ok … I said all that to say this, these precious children, Emma Grace included affected so many. God certainly had the grandest of tasks for them because He knew they could handle it and handle it well. We continuously learn from them. Of course, I’m going to speak of Emma Grace stories in particular because I’m ever amazed that God allowed me to learn from my child. We have jokingly told stories of her 'vivaciousness' … but she had LOTS to do in a very short time. And she did it with a smile, with entertainment, with a slight, yet mighty touch or even just a look. She had the “whatever it takes” attitude of facing her life, no matter what obstacles got in her full steam ahead path.

I’ll share a portion of a precious email we received this morning, as a reconfirmation that God used Emma Grace in a big way to touch others and He continues to use her sweet little life for Him. For a very long time now I have visited several sites and kept prayers going for many children and their families. I have always felt compelled to never forget to check Emma Grace's site. When my busy and hectic schedule wouldn't allow much computer time, I always found a minute to check on you all.

“The other day while in the shower I was pondering that exact thought......why her site.....why do I still keep returning.....why do I continue to keep that family in my thoughts and prayers.....and I learned something that morning. Emma Grace and your family have taught me that no matter what happens in our lives God always has us in the palm of his hands. And even in death, your family is continuing to show others that relying on God is what life's all about. And that we will be ok. Maybe not the way we want to be, but we will be "ok". Thank you for sharing your life with complete strangers like me."

Now see, that's where I want to take the opportunity once again for sharing in this journey with us. The thanks goes to you and most of all, to God for sending you. Cousin Nancy wrote a song that we used in Emma Grace’s Life Celebration Service, “All That Really Matters Is You Shine.” That is so true … no matter what, God’s light needs to shine. And His light is bright enough to shine even in our darkest of hours … that’s the Sonshine Emma Grace and her precious friends taught us about.

Ok … now I know why I’ve only been updating every two or three days … my mind’s whooped!!

Please be sure to keep our Miss Christal in your prayers. They will decide on Thursday “what’s next”. One of the tumors had reduced but the smaller of the two has grown considerably. Not quite the news we were looking for. Please remember Chris, Drew & Todd as they move forward from here. Also, for Dr. Gajjar as God directs him to treat sweet Christal. I know they would love to hear a note of encouragement if you get a chance. http://christalinfo.servemp3.com

Please remember our Jaker Jake as well. We’re praying for something to show up on the next scans. Sounds crazy, eh? I think they are headed back to the beach ... oh, how I wish it were closer ... I'd be there in a skinny minute. www.caringbridge.org/la/jakeowen

Our little RMH / SeaWorld friend, Christopher, is on hospice now. Please lift this precious family in prayer as the days of now and ahead are nothing a parent should have to endure. www.caringbridge.org/tx/christopher.

Our little neuroblastoma buddy, Ben Bratton, has also relapse again and they certainly need our prayers. To my knowledge, they do not have a website but I know they would appreciate your lifting them in prayer.

You all can never, NEVER know what a blessing you are to us. Thank you so much for all the precious, encouraging notes, emails, cards and most of all, your prayers. God doesn’t do anything half way … He sends reminders everyday by blessing us with you.

Only By His Grace – Trish

PS … As soon as I figure out HOW, I have a really cool announcement to post on the homepage. Another incredible blessing from a God send friend we have never met. I’m working on it and don’t want to spoil "it" until “IT’s” there for you to see!! And I’ll leave you hanging with that ... Love ya!!

Sunday, August 14, 2005 9:24 AM CDT

Good Sonday to you!

This will be the ever so short version ... details later.

We're doing ok ... Barney is home for the weekend!! Thank you Lord! Eli is at a weekend church camp with the Weddington Church and I presume having a great time. We had a wonderful road trip yesterday with the Bailey's that was OH SO THERAPUETIC!! Emma Grace and Donkey even rode with us ... certainly taking up sweet conversations of precious, precious memories, stories and teachings from "the mouths of babes".

We are headed to Sunday School and church this morning so I will update more later ... We wanted to say we love you and thank God for you all everyday for being so supportive to our family. Two special requests: Christal is having scans Monday and Tuesday - these will determine the "next" plan. Also, Jake's AFP is still on the rise. His scans are scheduled for Sept 1st. Please pray for CLEAR AND CONCISE images.

May His Sonshine surround you today and pray for rain to continue that is starting to fall as we speak. We are in need of a good, soaking rain.

We love you more than you'll ever know!

Only By His Grace - Trish

Wednesday, August 10, 2005 8:51 AM CDT

Well, my greatest intention was to get the website updated last night and I’m not sure if it was the heat or my getting up at 4:15 yesterday morn but by 6:30 pm I was OUT!! I woke up on the couch at 10:30 and decided to go on to bed. Obviously, I hadn’t got enough sleep in.

Last week I fell asleep on the couch and Barney called. #1 - I don’t remember even talking to him and #2 - I feel asleep mid-sentence. Barney said he gave up trying to get me awake and had to call Eli on my cell phone (who was in the shower and didn’t know what was going on). Barney told Eli to go get the home phone away from me and hang it up as I was sawing logs. Rita, don’t feel bad – you’re not the only one I go to sleep on while talking on the phone!

Things have been pretty steady around the home front … Eli is practicing football every afternoon and still working with Poppa before and after practice. I went to pickup him up last week and he was running the backhoe digger then yesterday he was driving the dump truck. ALL ON SITE OF COURSE. He is growing up so fast. He starts school on Aug 19th with a Black and Gold game that evening. Eli and Barney have started getting Flit, our quarter horse momma, back in shape and more tuned up with having a rider again. It’s been so long since anyone has worked with her, she just needs some daily work and TLC. Eli is LOVING getting to mess with her everyday. They do pretty good together. He used to be pretty intimidated by her because she’s quite big but he is doing much better with her. The colt, ELF, gets jealous and squeals like a baby because Eli is paying so much attention to Flit. So, Eli usually gets ELF out to walk her around and pacify her. Spoiled I reckon.

Barney has been running back and forth from Fayetteville to Shreveport so we’re getting to see him this evening which is a switch. It was nice to have him in worship with us on Sunday. We’re hoping to have him home more on the weekends.

Yesterday afternoon I met my lifelong friend, Darlene and Lisa at the Angel Garden. Lisa’s brother and sister in law, Johnny & Betty, were the couple I told you about last year that was killed in a car wreck while on vacation. Johnny is Leslie’s daddy, who I work with sometimes at Traylor Shavings. Leslie is married to the Traylor’s son, Scott. Well, since we were honoring Angel Hanna with the balloons, we did the same for Johnny & Betty. They all three left this earth on Aug 9th of last year. As the balloons lifted higher and higher, I couldn’t but help imagining what the balloons all over the world looked like from Heaven’s prospective. I believe Tammy, Hanna’s mom, said on her website that 38 states and 7 different countries were joining in this tribute for Angel Hanna. That is amazing!! Just from our little speck of the world it was very beautiful and lifted our spirits.

Emma Grace’s site at the Angel Garden is about 4 lots over from Johnny and Betty so of course, we visited our girl as well. I don’t care how many times I go, I don’t think I’ll ever get used to that being anything but a resting place. She’s just not there. She’s seeing beauty far beyond our wildest dreams and is running healthy and free. Grief is possibly one of the strangest and most unpredictable emotion I have ever encountered. It is something that touches your very soul. Prime example – we’re in Sunday School last week, laughing, talking and enjoying the message. At a glance I look over at the classroom that is to the right of my view. I noticed they recently had painted it a beautiful soft peach. Then without any further thought, I realized for the first time that I couldn’t hear Emma Grace in the classroom that is behind that “peach room”. Often Barney & I could hear her being rowdy, fussing, playing, laughing or even singing as she was always very vocal (gee.. go figure). Well, it was just as abrupt as the shredded cheese meltdown or the lawnmower recollections – it was like someone dumped a bucket of hot water on me and I couldn’t stop the tears. Sometimes I think we just miss her more – granted, we miss her everyday but sometimes it’s greater than others. As sadden as my heart was that morning, the worship was sweet. The songs, the message, the whole worship service – just very tender and sweet. I’m ever amazed that God always sends His very spirit to comfort us even when it starts over peach paint.

Well, the Maxwell Family (our extended family) is growing in leaps and bounds this year. My dear Aunt Judy’s children have contributed three precious girls – Micah born March 13th to Kyle & Mindy, Maddie born June 6th to Janet & Justin and Charlie Ann born July 17th to Brad & Brandi. My nephew, Joey & Kristen, had their first yesterday. Welcome, Sarah Dianne who arrived at a whompin’ 5#, 15 oz. Lots of beautiful little darlings to add to the family.

My mom’s MRI resulted in being protruding disks which have been causing her lots of havoc. She started treatment with Dr. Lucas this week and hopefully, will be feeling some relief soon. Thank you for your prayers for her healing.

We love you and thank you always for your love and prayers. Please continue to pray for our sweet babies who fight their battles daily. Also, please remember the many families whose babies are now Angels in the presence of our Heavenly Father. As much as we love them, He loves them more. With that being said and true, I can only imagine how great His love is. May His Sonshine surround you!

Only By His Grace - Trish

Saturday, August 6, 2005 9:17 AM CDT

Just a note to say we love you, your kindness and prayers are gifts from God. Daddy came home the wee hours this morning ... SO glad to see him and have him home!! It's still so surreal that Emma Grace has been gone two months today. Time really is of no consequence still as it seems ages ago. Thankfully, God is protecting her that time really doesn't matter anymore and before she knows it ... we're there.
Looking forward to that day ...
Only by His Grace - Trish

Wednesday, Aug 3rd Update:
BALLOON RELEASE IN MEMORY OF ANGEL HANNA AUG 9TH at 5:00 pm CST. Please visit her website for more info at www.caringbridge.org/ms/hanna

First, let me just say ... sorry in the deeeeeelaaaaay. I'm not sure if it's the heat or what but I have been worn out this week. I haven't been doing any more (or less) than normal - whatever that is these days. I do think that my body is still after all these weeks / months trying to catch up and cope with the emotional and physical stresses of being at the Jude, our moving home-home and Emma Grace's huge move Home-Home. One would think I might be a little more "caught up" by now but I'm not sure there's a definitive timeline on when that truly is. I certainly know there isn't a definite "grief period" and trust me, it's not described in any book. I do believe it is different for everyone so we're just doing one day at a time. I would love to tell you the days are easier, and let me say God's grace is sufficient and His mercy is incredible but the missing her continues to grow.

I can't go any further without sharing this praise ... which is on a very personal note for Barney and I. I considered just keeping it there but God is so good, I must give Him the praise. Recently, we had prayed for a certain financial issue to be considered if God saw fit. Honestly, it is one of those times that we took it to the Lord and literally, left it in His Hands. Marianna, my boss who is SO much more - my sister in Christ, and I united hand in hand, heart to heart in prayer one morning concerning this matter. (Isn't is amazing that God has provided not only a source of income for our family but also a Christian family in doing so??) Anyway, I received a phone call today and God has provided!! Thank you Lord!! I immediately broke down in tears and the dear gentleman thought he had upset me. I told him that he had no idea what an answer to prayer this call was and I told him as I had explained to Emma Grace many times when she would see me cry over joyful things, "these were happy tears." I got off the phone, Marianna and I stopped right there and prayed again, thanking God for His answer to this situation and then I called Barney to give him the good news. His first exact words were, "Thank you Lord". God is so very, very good and I'm continuously amazed at His goodness and grace. I told Barney that Marianna and I had prayer as soon as I hung up the phone. You will not believe what she said right off the bat as she led in prayer, "I thank you Lord, I praise you Lord", - sound like a little blue-eyed angel we all know?? She had no idea that Emma Grace used that same sentiment in nearly every prayer that precious baby prayed. So ... as Mimi Sharyn would say ... is it odd, or is it God?? I KNOW the answer! Never underestimate His goodness and grace, not to mention His unconditional love.

Last weekend was full ... Saturday, I had my mind set on getting this yard mowed - early before the heat of the day. I sat out by 10 am and didn't get off the mower until after 1 pm and I still didn't get the back 1/3 finished. (We have abundance of yard). Needless to say, I added to my beach tan and got a little more than I needed. Eli got busy with the weedeater ... you know, he needs to keep those muscles built for football season. Besides, he's much younger and more limber than I.

As I was running the mower I didn't really have "windshield" time but lots of alone time. I thought back of the first time I came down the road to see Emma Grace ON the mower, Barney and Eli standing in the yard watching her go forward and backward, forward and backward. She was so thrilled that I had came home to see her new accomplishment. It goes without saying the mower was NOT engaged but she could have cared less ... her Daddy was letting her have the reins to run it and she was grinning from ear to ear. She always loved riding with us when we were actually mowing so I would let her ride on my lap out in the open, flat areas of the yard. You have to get the whole picture - this mower is one you drive with the sticks on each side, so Emma Grace and I would have to "strategically" place ourselves with her on my left leg so I could drive. It never failed - paci in mouth, riding in Momma's lap to the "humm" of the mower and her little head would start to bobble forward - yep, sound asleep. I would stop, she'd wake and I'd want to go lay her down in the house. "No Momma, I'm awake, I'm not asweep. I'm ok, I'm ok." Now granted, it's not the easiest thing in the world to hold a sleeping babe especially when we were "space deficient" but it was priceless. This would go on over and over again as well as everytime we would mow together. I compare this to the day of my "shredded cheese meltdown" as I never dreamed I would get so emotional over mowing the yard. Oh how I miss those times and wouldn't trade them for anything in the world. If I'm not mistaken, I believe there was a little girl about "35 plus years ago" that used to do the exact same thing with her Daddy on the bulldozer of all places. Like Mother like Daughter.

Later Saturday afternoon we went to the Pumpkin family reunion in Stilwell at cousin, Shelly's house. We had a great time. Bro in law, Marvin, Lee Ann and Linnie were there as well as bro in law, George, Linda and family. There was a yard full of beautiful children which obviously made me miss Emma Grace more. Barney didn't make it in this weekend so yes, Eli & I went on. We met several folks that we had heard about many times but had never met, saw some that I'd only met on few occassions and got to visit with Barb and Eli David who we seldom get to see for extended visits. There were actually three Eli's on hand that day ... ours, Eli David and their son, Eli Jr. Needless to say, when I would call out my Eli's name, the other two were looking up to see what I wanted. It was a comical confusion. We had a great feast but the laid back fellowship was even better. Marvin, Lee Ann and Linnie came to spend the night with us and we had a great visit. I had to load Linnie up with Emma Grace treasures - makeup, hair do-dads and you know, girlie-stuff. She even let me fix her hair and get her dressed Sunday morning. It did my heart good that she wanted "Aunt Trish to do it".

Every 5th Sunday, the Prairie Oaks, Weddington, and our church, Summers Missionary Bapt Churches take turns hosting singing while fellowship dinner. This time it was held at Prairie Oaks in Prairie Grove. It was a wonderful service and the Lord met us in spirit and worshipping in song. Since Emma Grace's Homecoming I had yet to sing except at Monie & Brodie's house the next Saturday after her Life Celebration Service. I was having a struggle with when would be the time I felt I could not to mention, God really hadn't laid it on my heart to sing. Well, Brodie had put the wheels in motion that night at his house that he wanted us to sing together with their group at the next 5th Sunday Singing. Ok, I was hooked and knew I wouldn't be able to back out with others involved as well as I could if it were just me. God is in control, right? So I would just leave it up to Him. Well, the whole service was incredible but when I heard one of my dearest friends of 23 years, Denise Baugh, sing "Somebody Prayed for Me", I knew. You have to understand ... first, I didn't know Denise could sing like that. She belted that song out beautifully!! Second, Denise is normally pretty reserved and bashful. She said she gets nearly sick from being so nervous so she had backed out many times. Talk about God anointing her message in song!! I can't even begin to describe it. This girl has been holding out on us but now, there's no pretending. God has blessed her with an incredible voice and I'm so thankful He worked it out for her to stand in His honor, singing His praises. She told me later that she just "gave it to God" and once again, His timing was perfect. Brodie & the Boyz (I just made that up) and I were next and for once, I was nearly speechless. You know, I'm a pretty big ole girl and it takes a whole lot to knock me over with a feather but God used Denise to knock me over that night. And what a blessing!

I'm gonna have to wrap this up but I can't close without thanking you all for the many cards, phone calls, emails, messages, memorials in Emma Grace's honor, contributions to St Jude, Ronald McDonald House, Target House and CaringBridge and your marvelous love - especially your prayers. You cannot know how sometimes the days seem to darken around us without much warning and the next thing we know, our eyes are lifted back toward Him. There is no doubt it is because, just like Denise sang last Sunday, "Somebody Prayed for Me". Thank you so much ... you are treasures to our hearts. Please continue to pray for our sweet babies who continue their fight, for Jake as the scan was "negative" but AFP is rising and for my Mom who had an MRI on Monday due to her continuing problems with her hip. We should have results tomorrow. We love you all!!

I have to leave you tonight with a story on myself ... Mom and I were headed to Fayetteville one afternooon and I was reading to her a sweet card from a precious man named Joel. He was sharing with us what Emma Grace meant to him and that he continues to pray for us. He shared he is already a "Partner in Hope" for St Jude and asked that his monthly contribution be changed in memory of our girl. Also, he wanted to do something unique in "keeping her spirit alive" he wrote. In reading the compassion of his note, at this point, I'm reading through sobbing tears (and driving ... scary huh?) I get to the point where he has decided to have a tree planted in her honor in the Holyland, Israel. Well, the first reading of this card through my uncontrollable tears I didn't quite read it that way. I thought I read "Hollywood". I turned to Mom just a snottin' and blowin' and said, "Oh Mom, he's so sweet!! He's having a tree planted in Hhhhhhhooooolllllllyyyyyyyyywoooooooooood!!!!!" I must say, I went to sleep that night thinking it was indeed Hollywood. It was until the next day that I read it again (this time with the old contacts in the trash due to the salt) and realized my complete misreading. I laughed at myself and wondered with obvious egg on my face, "You big dummy! How in the world did you get Hollywood out of Holyland?!?!?!" Not even close. His card did say the "tree would flourish there (the Holyland) just as her spirit does with God." Joel, you are a sweet darlin' and the tree is perfect ... whereever you had it planted!!! Thank you!! (smile)

Only By His Grace - Trish

Monday, August 1, 2005 5:32 AM CDT

Good Mornin' Sonshines!

This will be an ever so brief note (but you know I'll catch up later ...)

Eli had a great time at church camp and our of the 24 kiddos that went with our church, there were 5 that accepted Jesus ... again, one of those being our sweet Dalton. God is so very good!

Barney is still on the road rollin' wheels and blowin' smoke ... he's waking up this morning in our familiar home-away-from-home, Memphis. If all goes as planned, I think he's going to try to make it over to The Jude and donate platelets.

It's Monday so I better get in gear for work. It is such a blessing to work with The Traylor family. God certainly had this all worked out and I'm so very thankful.

Please remember our Sweet Raborns as today will be Mrs. Gloria's, better known as "Nana" Raborn's Life Celebration Service is this afternoon. There is a beautiful tribute narrative on Jake's site. We love you Raborns and even though we are unable to be with you today, our hearts are there always!!

Also, Jake will be having his PET scan tomorrow ... big prayers for him as well.

Thank you for your faithful prayers ... you are treasures to our hearts! May His Sonshine surround you!

Only By His Grace - Trish

Thursday, July 28, 2005 6:27 PM CDT

SATURDAY MORNING 9:30: Little Jake's Nana earned her angel wings about 1:30 this morning. Our hearts are broken for the Raborn family and especially sweet Don. Stacy, Mo & Mr. Jake are in the air as we speak headed home. Stacy said she would let us know about arrangements and I will post when I know. Please lift this precious family in prayer. Don called after I posted this and is obviously crushed and heartbroken. To make matters even more tender, today is Don's birthday. Bless his heart. He did tell me that his dad said be sure to tell Tina and Trish that two sweet angels met Nana Gloria at the gates. I imagine Emma Grace has already taught her to dance and Stanton has her bull ridin'. caringbridge.org/la/jakeowen

FRIDAY PRAYER REQUEST: Little Jake's Nana, Gloria Raborn, had a massive heart attack on Thursday and she certainly needs our prayers, as well as her sweet family. I just spoke to Stacy who is leaving Florida in the morning to come home ... she said it just doesn't look good for Nana Raborn. Please especially remember Mr. Don who already has his plate loaded. Feel free to drop them a line of encouragement as I know they would appreciate it. www.caringbridge.org/la/jakeowen

Do you think just maybe you're a wee bit tired when you hear your pajamas calling and you're not even home??

Alrighty then ... I guess I really have stayed busy this week which has been a good thing. Susie and I went to Church Camp to Tabernacle services and had a really good worship service. The message was on obedience and faith based on Abraham's life. He was willing to give up his son but God didn't allow him to follow through. Abraham meant business with God and vice versa. And in the midst of his faithfulness, God blessed him.

Eli and Dalton have met lots of buddies (I'm not sure how many of those are female - no one would say) and they seemed to having a great time. They will return home Friday (yeah) and I'm ready. My heart was touched beyond words when Eli leaned over in service and said in Tuesday night's service, Dalton had made a decision to accept Jesus. My heart is overwhelmed as I know his folks are as well. I couldn't wait to tell Gwen but I let Dalton decide what messages I was to deliver and that was the main one. It just doesn't get much better than that!! Thank you Lord!

Barney is on the road in Texas and hopefully, we'll see him the weekend ?? I have learned to look for him when I see the whites in his eyes. Please continue to remember him in his travels and abundance of windshield time. We are hoping he comes in as the Pumpkin's are having a family reunion. Barney's grandmother was Emma Pumpkin, who is Emma Grace's namesake.

I found a really cool treasure this morning that a dear friend, Judy Watson, gave me when my brother, Jerald, was killed. It is a great waterball with a teddy bear holding a kite that plays "Wind beneath my Wings". I have Emma Grace's picture back in "her spot" in our room so I placed the waterball by her and played it while I was getting ready for work this morning. It made my heart smile, smile, smile as God used her to put wind beneath my wings many days when I didn't think I had strength to go on. She was notorious for changing the mood in a skinny minute and putting a smile on my face ... that's forever in my heart.

Hope you all have had a really good week ... and a Sonshine weekend ahead. Please know that we love you all so and thank you for your prayers and friendship you so freely give. Jake's scan is scheduled for next Tuesday and his AFP is on the rise. Please say an extra prayer for them. www.caringbridge.org/la/jakeowen

Only by His Grace - Trish

Happy Birthday, Nancy Ann!!

Wednesday, July 27, 2005 6:06 AM CDT

The house is mighty, mighty quiet ...

First, Monday I was exhausted when I got home and God blessed me with some very restful 'napping' on the loveseat. Of course, this was after I slopped the cows and milked the pigs. (oh, maybe that was just feeding & h20ing the horses and the dogs, Sam & Jude). When I roamed the house it was just a little too quiet. Lonesome in a way that I never have known but in the midst of my emotions I knew I needed to get some more rest. And this is how God blessed me to sleep that night. You've heard me say in the past how with every prayer Emma Grace would also say, "I thank you, Lord; I praise you, Lord" sometimes more than once in each prayer. As I struggled to find peaceful rest, I began with one thanks and one praise, then another, then another in the same way Emma Grace used to pray her precious prayers. Before I knew it, I found myself resting in His arms and sound asleep. Amazing, I continue to learn from a very wise little 4 yr old who truly knew how to pray. I just imagine He loves hearing it directly in His presence now as much as she loves to tell Him, "I thank you, Lord. I praise you, Lord."

While taking care of the horses last night, I just watched ... Emma Grace LOVED her horses, as you well know. I spent some quiet time with them last evening as they ate grain. They are so lovely to watch and knowing how much Emma Grace loved being around them just made me feel serene. Can you feel a little serene as well as missing her even more?

I'm sure Eli and Dalton are having a big time at church camp. Susie Q and I going over to Grove, OK for their evening services to be with the kids. I sure miss my little man being here ... I can't remember the last time not having at least one of my children with me for a whole week. It's beyond strange - it's that "learning to live a new way" we've talked so much about.

Barney is rollin' rollin rollin' headed south to Shreveport (I believe). God certainly blessed me with such a sweet man. He misses his "Daddy's Girl" more and more each day, just as I do and in our windshield time this past weekend he shared with me several people God has placed in his path when he needed someone most. I love hearing they shared their faith in Jesus and what comfort He blesses both Barney and the particular fellow Christian he happens to be visiting with at that time. Please pray for Barney's safe travels and that God will continue to place brothers and sisters in Barney's path to lift him up when he needs it the most.

I got to spend some quality time with Barney this past weekend. I almost felt like a teenager going out on a date to meet him as he was traveling thru Van Buren. (Believe me ... when I looked in the mirror, I saw the grey hair, the lines around my eyes and my 'not so teenage' mother's body but that night it didn't matter.) Barney loves it when I "fix myself up" so I did. Our time was short but we had a wonderful time. I told you about the great book I read "A Window to Heaven - When a Child Sees Life in Death". I read to Barney some of the many places I have highlighted in the book and as I read we shared our brokenheartedness in the parallels and truths of the author's writings. Yet, we were enlightened as well. There are two profound statements that I keep coming back to: "The healing of memories can be more difficult to accomplish than the healing of cancer." An old Viennese saying: "It is better to have a horrible ending than to experience horror without ending." Dr. Komp says in her book that it takes faith to make those first steps toward what would seem to be a holocaust than live through a thousand imaginery holocausts without end. Let me say, the only "horrible ending" was the abrupt absence of Emma Grace and our earthlly bodies hurt and long for her presence. But she is healed, PERFECTLY went Home to Heaven carried in the Arms of Jesus and there is no doubt, Stanton, Ali, Zoie, McKenzie and the list goes on to who was at her side. Though our minds don't always understand, Barney and I find comfort in knowing God has every detail, big and small, already worked out. Barney reminded me again in the midst of our shared tears, "God is good, all the time." Thank you God for giving me a companion who believes You and reminds me of Your goodness ... all the time.

I can't go any farther without saying this ... There is no way to tell you all how much we treasure your thoughts, memories aka 'heart smiles' of Emma Grace and things you've learned from her thru her short journey. Eli loves to receive the pink and purple letters in the mail the Crew had available at her Life Celebration service. Nancy and the Girlz did this at Ali's Life Celebration and we thought it was such a wonderful idea. Little did I know how much we would learn from you as you share your heart. These are all going in a Angel Keepsake Book as well as the guestbook entries. I also figure this will give me some busy time as the seasons change.

Daddy and I were visiting yesterday while surveying all the work at his developement project. We got to laughing and reminiscing about when they followed us to Little Rock from Memphis in October 2004. We were flying out the next morning for her last trip to Philly for the MIBG. Emma Grace was in prime form that day. When Eli, Nanna and Poppa were pulling out of the parking lot Emma Grace went into one of her onery, dancing routines: shaking her little biscuts, sticking out her tongue and cutting up with them all to make them laugh instead of cry because they were leaving. All the while she was cackling and her laughter was always contagious. She knew how to flip a mood like a switch with her bubbling little personality.

Nancy and I were visiting this past weekend and we discussed we have two choices - pick up the pieces, put them in a "mental bucket" to sort as we go, and move forward or we can have a never-ending pity party and stay in the ditch. Which do you think Emma Grace would want us to do?? I'll reiterate ... does that mean that we won't cry at the drop of a hat for unknowns or knowns like shredded cheese or precious memories that make me laugh outloud?? not likely Or not wish for anyone to mention her name for fear they might upset us?? absolutely not ... WE LOVE talking her. Do you think there won't be a single day much less hour go by that we don't think of her?? not in a million God is so good to give us just what we need when we need it most and He has our broken hearts in the palm of His gentle, yet mighty Hands as He mends the remnants of our hearts. I never knew that in the friendships He has blessed with especially, Tina and Nancy that we would be sharing this portion of the journey. But I thank God that He has blessed those sisterships so we can lean on each other as we grieve, learn and eventually grow.

Nancy brought something to my attention that I have also noticed. We ook at people in a whole new way ... you never know what kind of "storms" people are facing at that very moment. People you meet on the street, at the beach, in stores, at church, at work, wherever . We can all put on our "happy face", and meet complete strangers and they would never know our Emma Grace went Home only 51 days ago. I pray as I meet people that I don't overlook their "storm" thru a seemingly "happy face". Eyes seem to tell a million secrets without ever saying a word.

Nancy was shopping at a shoe store recently and had on her Ali shirt. There was a mother with apparently her son and he said, "Look, its a Ali shirt." The mother said, "Yeah, that's the girl that died at St Jude." WHOAA!! Nancy was stunned. The little boy "got it" because the Ali shirt obviously brought joy and excitement to his voice ... the mother sadly, did not "get it" and said, without her even knowing it was Ali's MOTHER next to her and was truly the victim of her harmful and lax words. We never know who is "next to us" and what they may be going thru and believe me, I'm the worse at running my mouth when I should shut up sometimes. So, in hearing the hurt in Nancy's voice, it reminded me once again that I need to be even more aware of those around me.

Well, I better get in gear and head to work. For some reason I woke at 4:38 am and was wide awake so I finished this update that I started last night. We had some dandy thunderstorms blowing through so I shut down the computer in effort not to fry it. So, I just went outside and watched the amazing lighting show in the west. You know, in the midst of the literal storm blowing in, there was a certain beauty in the clouds of lightning flickering all around. I'm alot like my Daddy who would sit on the porch and watch the storms until the last minute to take cover. It would make my sweet Momma crazy because Daddy never got excited (or in a hurry ... ha!). But I recall like it was yesterday he usually had his little girl sitting right next to him enjoying God's show in amazement.

Thank you for your continued prayers ... your faithfulness is truly awesome. Please remember our sweet babies who are continuing their battles. Note: Jake's PET scan has been put off until next week. www.caringbridge.org/la/jakeowen. Please say an extra prayer that Christal's ANC cooperates so they can come to the Hampton House this weekend. I'm trying to withhold my anxiety as I know all too well it's so hard to plan when ANC is a factor. Have a blessed day and let's look together for God's beauty and wonder in the midst of our storms ... the rainbow is just around the corner.

Only By His Loving Grace - Trish

Thank you Lord for the much needed rain!!

Monday, July 25, 2005 0:56 AM CDT

Okey, dokey ....

This will possibly be one of my "shorter versions" as the dryer is still running, Eli is partially packed for church camp and I have been to Wal-Mart TWICE today. (For those of you who know ... I'm not a "Tina Shopper"). Barney left out this afternoon for an Ohio delivery on Monday. We had a great church service this morning, we ate with our dear friends, Paula and Alicia in Siloam Springs (thanks girls!! We had a great time fellowshippin'!), Eli thought he needed to go to the swim park today, I did my 1st Wal-Mart run with Mom, raced back to pick up Eli and then onto Sunday evening services. Leanne and I had a great "girl time" visit while making my 2nd Wal-Mart run after church. You remember I would rather be on the run than being 'idle'?? Well, BINGO!! I think I run my self into oblivion today!

Eli is so excited that his buddy, Dalton, is going to church camp with him to Grove, OK this week. And I think that we are going over one evening this week for the nightly Tabernacle services. I remember church camp so vividly, the great worship time, the supposedly 'lights out' time with a bunch of giggly girls with a bonafide case of the sillies and the friendships that were made for a lifetime.

This week is going to be more quiet than normal with both my boyz gone so please say an extra prayer for me. If it gets to be too much, I have a motto: "Have wheels, will travel". (Gee, wonder where my children got their "go britches" from??) I plan to stay busy at work (which I LOVE!!!), try to get some stuff caught up at home and wouldn't it be wonderful if some housework were done?!?!?

We are looking forward to the weekend as Miss Christal, Kylie Hope and Christal are coming to spend the weekend with us. It seems AGES since we've seen them!! In all the hussle and craziness, I don't know if I've ever told you how Chris took the "bull by the horns" so to speak when we were packing up at the hospital and moving out of the Target House. I have thought of her many times and in the midst of being in the "bomb zone" with just losing Emma Grace so quickly, she took charge. Barney and I would have never made it without her "assertiveness" as well as Marvin, Ernie, Mom and Aunt Faye. (wow ... that seems like an eternity ago and it's been less than 2 mos). We are praying that Christal's counts cooperate but as we all know, we don't plan in stone - just pencil in the details and when I see the whites of their eyes, then I can do backflips. (Ever seen a girl MY size do backflips?? ... itza hoot!!)

Monday is Mr. Jake's PET scan. Please pray for the scan to be crystal clear so they can be decisive about his next course of action. I know this waiting is almost unbearable at times so please remember sweet Staci & Don as they follow God's lead. Also, please remember our dear Haynes' as they place Stanton's marker at the Angel Garden Monday. I know this is going to be an emotional day for them and truly can appreciate the desire to put it off ... I seem to not really want to be in a hurry as well.

Ok ... this is going to be it for now ... I've made some notes of things on my heart that have come up over the weekend but it'll have to wait another day ... my tailfeathers are surely a-draggin'.

We love you all more than you can ever know and thank you for your faithful prayers for our family as well as all our children who bravely fight their daily battles. May God's love surround you and send you blessings for the coming week.

Only By His Grace - Trish

Sunday, July 24, 2005 3:03 PM CDT

UPDATE: OUR SERVER HAS BEEN DOWN DUE TO A MIGHTY WIND STORM / POSSIBLY SMALL TWISTER THAT BLEW THRU PRAIRIE GROVE YESTERDAY. LOTS TO SAY, (OF COURSE) BUT WILL HAVE TO WAIT TIL LATER THIS EVENING ... LOVE TO ALL & WE'LL CHAT SOON!!
ONLY BY HIS GRACE - TRISH

Thursday, July 21st:
Is it HOT OR WHAT?!?!?!? (and what a shock ... it's not midnight plus and I'm updating!!!)

You know, my being of the "well insulated" nature ... heat is not my friend. It's really not so much the heat as it is the humidity. I thank God air conditioning. Eli has been braving the heat with Poppa this week as they prepare to get the curb, gutter and streets laid. Eli loves being with my Dad, not to mention it's an added plus when he gets to drive the equipment - dump truck, bulldozer, loader - all on 12 acres of course!! (don't worry NWA ... I'll warn you when Eli hits the roadways!!) Barney is in Shreveport and hopefully, headed toward the homefront for the weekend. I think he has been battling the heat as well ... looks like his "idle time" is not going to be as favorable this past week.

Not only have I managed to melt like a pig (oink, oink) but my beach tan is scaling like a snake on my back. So, therefore I have been rubbing my back against the door facing like a bear rubbing on a tree. (You think I've covered enough animals yet??) Gee ... you'd think sunscreen was more potent than that!! Well, not to mention I've not been exposed to natural sunlight for any length of time for say, a couple of years at least. One certainly can't get a base tan in the flourescent lighting at St Jude that's for sure.

Last night our bible study was on "Love" in 1 Corinthians 13. You know, the one about "love is patient, love is kind, love never fails, ...". I love this chapter and as Bro Jay was sharing with us, I couldn't help but think that the whole chapter reflects God and His love for us ... God is love, period. In each place where it said "love" (charity in the KJV), I would replace it with "God" and He so perfectly fit. (Surprised??) Try it sometime ... it was very interesting and enlightening. Some portions spoke to me intensely ... vs 2 " ...and if I have a faith that can move mountains, but have not love, I am nothing." vs 10 "but when perfection (Perfection, my emphasis) comes, the imperfect disappears." You have to know this one is where I'm looking. There is so much "imperfection" in this world; we would be prime examples of this as only One held the title of Perfect but especially the imperfection with cancer attacking the body and robs so many families of so much. So I keep looking for the day of His perfectness. And Paul confirms that in vs 12 "Now we see but a poor reflection in the mirror; then we shall see face to face." Whew!! What a day to see Jesus face to face ... and I just imagine there will be a curly topped little angel close by bouncing with excitement of all she can do with her perfect body. You think maybe the Apostle Paul was trying to get thru our heads we need to love as God is love?

Nancy and I have talked at length about "our girls". One topic we have found a handle of peace on is the fact that regardless of the cancer, we had the blessing of God sharing these precious baby girls with us. Nancy questioned, "Would we 'gotten it' or have been as happy or learned as much had we just lived our lives with our boys?" The boys certainly bring much joy to our lives and we love them with all our hearts so please, I certainly do not wish for this to be misunderstood. But for reasons unknown, God blessed Nancy with Angel Ali, Tina with Angel Stanton, Janet with Angel Brendle, Chastity with Angel Zoie, Tammy with Angel Hannah, Jennifer with Angel Ben, Billie with Angel Dustin, Sonya with Angel McKenzie, Theresa with Angel April, Me with Angel Emma Grace ... sadly, this Angel list can go on and on and on. (sorry Dads, I originally had this conversation with a mom so it flowed to continue with moms ... not to leave you sweet men out by any means!) These precious angels, these precious babies still fighting this dreadful fight, and Thank God! for these babies in remission and cured! All these children are dealt some heavy hands yet are incredible blessings ... period.

Now ... I'm obviously speaking from a "Cancer Mom" perspective ... ALL children are blessings. Some come with different "life accessories". And as Nancy pointed out just last night, she (as do I) felt incredibly blessed "BD" (before diagnosis) for both our children. Now, that the "bomb" has gone off, we still feel blessed God chose us. He shared His love thru Emma Grace, Ali, Stanton, and yes the list goes on ... to remind us of His unconditional love the Bible so often speaks of. Love without condition - that's awesome. One thing I saw in Emma Grace was her unconditional love, in her world everyone was equal, (just like Martina McBride says in her song). "darkness turns to light and the world is at peace." I have said many times in giving our story for St Jude, and as I have journaled several times over the past almost 3 yrs - I will NEVER be happy for the reason that brought us to St Jude but I am ever grateful for the blessings God has laid out so perfectly along the way. You know what is really amazing ... He continues to bless. I pray I can be a better mom to Eli for what we've learned along the way with Emma Grace and FROM Emma Grace. So, yes ... we are thankful and feel a tremendous blessing that God gave us our blue eyed babes. Does it make it hurt any less?? No, but we will lose that ole imperfection one day when this "shell" we live in is a thing of the past. Does that make any sense?? I'm not sure I can get my head around it all and probably never will ... on this earth. But I look forward to the day of Perfection ... He will be worth it all, that I know.

There are some specific prayer requests I wanted to share with you ... the first is a tragic accident that happened in Prairie Grove right before we left on vacation. You will recall Emma Grace's little friend, Cameryn, Carly is her big sister and is good friends with one of the Doughty boys, also named Cameron. The other car that was involved was a friend we go to church with, Isaac West. He is doing ok now but I imagine that he is having a tough time emotionally. I'm guessing but I believe Isaac is only about 20. I copied the email from Tonya for you:

"I was wondering if you could put a prayer request on Emma Grace's website because I know you have hundreds if not thousands of faithful prayer warriors who check in everyday. A little over a week ago a friend of Carly's was involved in a terrible car accident. This family of seven was hit head on by someone who crossed the center line. The mom, who was seven months pregnant with her first daughter was killed instantly. Carly's friend Cameron sustained two broken legs and a broken arm. Three of his younger brothers were admitted to the hospital along with their dad. Two of the little boys are now at Children's. Carter a first grader has traumatic brain injuries. Christopher, Cameron, Carter, Christian and Caleb Doughty of Prairie Grove are desperately in need of prayers. There is also an account set up at all of the Arvest banks for them since the dad will be spending several months, at the least, with his sons at Children's."

There is another little neuroblastoma boy that just had surgery for tumor removal. His name is David Norris and I believe he is in New York. He is on a vent due to fluid on his lungs post surgery. I have never met this family but I was notified by a dear lady in Texas who knew we would lift this child and his family in prayer. If you would like to drop them a line of encouragement, I know they would appreciate the prayers and support. Sadly, we know all too well how frightening it can be to be in ICU and on a vent. It truly is hour by hour, minute by minute watching and waiting. www.caringbridge.org/fl/davidjourneynorris

Shelly Reed, a mother of two in Lincoln, that has been battling brain cancer for some time. Recently, they discovered more tumors which limits her treatment options and the prognosis doesn't seem good at all. I apologize I don't know the exact time except that she was diagnosed after Emma Grace. Anyway, I spoke with Shelly this evening and she told me they have not decided whether to do more chemo or not. My heart goes out to this family as I'm sure she cannot fathom the thought of leaving her precious children, husband and family. God is still on the Throne and we pray for His Hand of mercy. Please remember them as she spends as much precious time with her family as possible.

Thank you for your continued prayers, your overwhelming and heartwearming notes of encouragement and for the love you show not only to our family but all our families. We love you so much our hearts can be the only authors. May your week's end be filled with His Sonshine!

Only By His Grace - Trish

"And now these three remain: faith, hope and love. But the greatest of these is love." I Corinthians 13:13

Tuesday, July 19, 2005 10:55 PM CDT

Our little trio is amongst the working force ...

Barney is back on the road again, Eli is helping Poppa at his subdivision developement while practicing football and I'm back in the saddle at Traylor Shavings which I love. It is great working with Mike, Marianna, Scott and Leslie and it's an added plus being so close to Eli especially, when school kicks off again.

We all seem to do better being busy rather than having too much quiet time on our hands. Those times are really the worst ... trust me, missing Emma Grace is ever present but while staying busy it doesn't allow you time to wallow so much. It's like Barney says, we're doing - putting one foot in front of the other and breathing in / breathing out. God is so good to cradle us and carry us when we have a hard time recalling what to do next - which seems to be more often than not.

I read a book last week by Dr. Diane Komp, "A Window to Heaven - When Children See Life in Death". For me to read a book in less than 10 hrs is unheard of as I could certainly qualify for the AADD category. In our shopping marathon last week with Tina, we hit a couple of Christian book stores that had some really good buys. This book is one that I'm having to soak in and re-read areas over and over. It has been quite eye-opening. Dr. Komp is a pediatric oncologist who did just as our sweet Dr. Ray as well as many others have, "they came around to the other side of the bed" to stand with us no matter what. Dr. Komp said she was warned by medical mentors to "set aside her personal feelings as she treated young cancer patients. Her faith had slipped away and she wrote that "If I were to believe, it would require the testimony of a reliable witness". Her 'reliable witnesses' appeared in the suffering lives of children she treated and they changed her life. She writes, "One of the bittersweet priviledges of caring for children with cancer is that you grow to love then and bask in that love returned. This love returned is a form of love that is rarely seen on this earth. It is unconditional." Later she says that "...God has ministered to my unsure heart with the gift of hearts untroubled." I have read that statement over and over again with vivid images of not only our precious Emma Grace but many of our "children" who faced each day with as much vigor and strength they could muster (and sometimes then some! ha) just to enjoy the day that was given with 'hearts untroubled'. The faith of a child is truly a pure insight that God has graced these little lives with to share with others and I'm so thankful He gave them such wide open eyes. Often we are truly the students learning from these dear babes.

Sam the bassett, Emma Grace's dog, trust me he was HER dog (he won't even give the rest of us the time of day even if he could tell time), now has a companion. Sam has a new kennel mate and her name is Jude. She is a sweet little pup, part blue heeler and part ?? who knows. She seems to have a labish look to her but who knows ... she just a doll. All black except for a white stripe down her nose and white freckled paws. Sam was having trouble staying at home since his Emma Grace was no longer here so we had to get him a kennel. Besides, he got to running the neighbors cattle and that's a huge no-no. He was pitiful ... his sad bassett eyes were even sadder so we thought a little friend might help him. And so far, it has been a really good decision. He seems to be the big dawg on the block now but hey, she's only 8 weeks old so he better enjoy it while it lasts!

I was looking at some pictures recently and have watched the video a few times that Luginbuel Funeral Home so generously made available for all of us. There's one that reminded me of how much she LOVED to take a bath. Though when she was a newborn, she threw a hissy fit so I would have to shower with her and she loved it. Later, she changed her tune and she would spend forever in the bath until her she was a prune. She had this hot pink blow up guitar that Lessie, a nurse's assistant at the Jude, gave her back in 2002. She would often pretend that was her 'air mattress' and she would 'float' in the tub. It was always a trick to try to get her properly balanced on this apparatus. Of course, when she had hair we always had to do the "shampoo doo" with all the weird styles of bubbles. Why do we do our children that way?? Because we're as much a kid as they are is my guess. Last summer, she and I started the salon roll playing and we would do all kinds of funky styles with her precious little curls. She onced asked me my 'name' (as you know all pretend hair stylist are like DJ's - they rarely use their real names). For some odd reason, I was "Franchessca". And I would even do a terrible impression of my assumed role but Emma Grace loved it. She would play along for awhile and then crack up at my ridiculous accent.

I think for as long as I live I will continue to love Emma Grace more each day as well as miss her beyond words, recall more insights she was sent to share (as the fog lifts from my world) and am ever thankful God sent such a delightful child to let His light shine.

Today we had the wonderful blessing of getting to spend the afternoon and evening with Mr. Jake and his sweet Momma & Daddy, Staci and Don. We sure needed a Raborn fix and we so enjoyed getting to spend time with them. That Jake is ALL over the place. I could not get over how well he is doing, how much he has grown and what a hoot of an little personality that has started to blossom. Eli fed the horses and brought ELF to see us at the front door. Jake got to pet Emma Grace's little filly and he seemed to have a good time. Please remember them as they are returning to Memphis this evening to try to determine what is next course of treatment for our precious Jake. His AFP is rising and we're just rebuking and praying. They are having scans done soon and hopefully, they can determine what the culprit is and handle it decisively and promptly. What a blessing the Raborn's and their families are to us and we are so thankful God allowed our paths to cross and our friendships to bloom.

Thank you for your continued prayers ... and also for allowing us to share our hearts. Barney, Eli and I can never thank you enough or repay you for all the love and kindness you show to us. We always lift you in prayer and want you to know that we want to be here for you as you have remained with us thru this journey. May His Sonshine warm you heart and your air conditions be charged with freon in this sweltering heat. We love you more than you'll ever know.

Only By His Grace - Trish

"For He shall give His angels charge over thee, to keep thee in all thy ways. They shall bear thee up in their hands." Psalm 91:11-12

Monday, July 18, 2005 0:01 AM CDT

The Big Red Truck has landed in NWA ...

And Daddy Barney was home waiting on us!! What a welcome sight he is and boy howdy, did we miss him. Thank the Lord we have free mobile to mobile minutes but it was time to see him!!

To say we are a bit tired would certainly be underrated but we had a really good time getting away with our Haynes Clan. Saturday was the day of driving ... the caravan rolled out of South Padre around 8 am, we parted ways with the Haynes' in Waco around 4 pm and Eli and I rolled on homeward to pull in a little after 12:30 this morning. I certainly earned my call name of "Truck Drivin Woman" this week and lived it fully on my 16 1/2 hours of rollin wheels and blowin smoke Saturday!! Eli and I had some good "windshield time" of visiting this week while driving. He's a pretty good travel buddy. He's like his Momma ... he loves to go. Leaving the Crew in Waco would be the least of my favorites for the week. Tina and I had already started the "waterworks" even before we got to Waco. If only we lived a bit closer ... It doesn't matter what the Rand McNally map says, we know what our hearts say. I am so thankful we had the time to spend together even though we knew it would come to a close ... it was still sweet time together.

God certainly blessed our travels and we thank you for your prayers. God put angels on every corner of Big Red and the trip went without incident. I think the angels even cringed a few times when anxious drivers would try to nudge their way into our caravan but we made it good and it was a trip I'll cherish forever.

We even made it home with hermit crabs. I'm not sure how well they will fair in the NWA but I'm going to give it a whirl. I'm quite sure some have already "expired" by the stench. I'm also quite certain that the inspection officer at the checkpoint in Sarita, TX didn't want me to dilly-dally too much as the smell was lingering in the bed of the truck. But their shells are beautiful and well, we'll just see how the rest goes.

We went to church this morning and oh how nice it was to be in fellowship with our family there. Bro Grant is in the Phillipines on a missions trip so Bro Jason brought the message this morning. He talked about listening to God's calling. This is certainly something that has came up in my mind many, MANY times since Emma Grace's diagnosis not to mention since her Homecoming. Tina and I had this very talk in our quiet time this week. I know God has a plan, He is the Master of Plans not to mention Master of All. In the midst of my fog, I continue to pray that God leads me to what He has lined out for me personally. It's like Barney has said many times before, "In God's will, God's time, God's place". I have to listen with my heart and I know God is still working on healing my heart.

As you can imagine, our vacation time also presented Emma Grace on every turn. I don't care how far you travel or where you go, the grief goes along, the memories, the longings, the laughters and the tears. We saw a "Joe's Crab Shack" sign along the road either in San Marcos, San Antonio (or SOMEWHERE ... too many miles). Anyway, Emma Grace LOVED Joe's Crab Shack in Memphis and so tears started to roll just at the thought of seeing that sign. Eli and I were talking about all the places she loved to eat in addition to Joe's - Spaghetti Warehouse, Cracker Barrell, you name it - she just loved them all. Eli said he couldn't even look at a Ford dealership in the road without thinking of her. Bottom line - that little precious girl loved most everything. We told lots of Emma Grace and Stanton stories this week and as always, it just makes my heart smile that those babies brought so much joy to our lives. Anytime when Tina and I were shopping, on the beach, on the highway, in a restaurant, wherever and we would see something that vividly reminded us of our babies, I would exaggerate in saying "Look at the clouds, look at the clouds" in effort to distract her from seeing something that had Stanton or Emma Grace written all over it.

In my quiet time of driving late last night, Eli had finally kicked the seat back to sleep and I had Martina McBride playing in the CD. When preparing for Emma Grace's Life Celebration service I had a vast assortment of music she loved to be played during her videos. At the last minute, I crossed off two songs Norman Greenbaum's "Spirit in the Sky" (as I feared everyone would confirm I had really went over the edge and I would put my sweet Daddy into orbit with the early 70's (?) rock) and the other was Martina's "In My Daughter's Eyes". I just couldn't do that one ... it was too close to heart. But as much as she loved that song on Martina's CD, she loved "God's Will" more. We would have to replay it over just "four more times Momma" before she'd be satisfied to turn it off. It talks about a little boy named Will who had braces on his legs, obviously smiled no matter what his obstacles in life lead him through. He let God's light shine. (Remind you of someone?? Me too) I listened to it the first time last night since June 6th. I then had to play it "four more times" before I could let it play "Somewhere over the Rainbow" (another song that we loved). I recall her singing at the top of her little lungs the chorus ... "I've been searchin, wonderin, thinkin, lost and lookin all my life. I've been wounded, jaded, loved and hated, I've wrestled wrong and right. He was a boy without a father and a mother's miracle. I've been readin, writin, prayin, fightin, I guess I would be still. That was until I knew God's Will." I could almost hear Emma Grace singing with me and Martina. And I had to think once again the words of this song are so true and hit home. Now, the "boy without a father" didn't fit but Emma Grace was definitely a miracle. God gave us a miracle with each day He shared her with us. And she got the miracle we prayed for ... healed beyond all healing.

We love you all and thank you so much for being with us each step of the journey. God is so gracious to send us you. Please remember all our St Jude kiddos and our other friends who continue to fight their battles. Pray for our sweet Jake that his AFP tumor marker will decrease and for Miss Christal as she continues chemo. May your days be filled with heart smiles of memories that make you happy and foremost, with God's love.

Only By His Grace - Trish

Friday, July 15, 2005 11:17 PM CDT

All good things must come to an end ... (well now, isn't that an understatement?!?!)

As we pack everything to start the journey home, it is bittersweet to say the least. We have had a really good time with the Haynes crew and much needed TNT time.

My heart is full and will update more when we land back in the NWA world. Love to all and thank you for your continued prayers.

Only By His Grace - Trish

PS Good job Waura on the outstanding updates!!

Thursday, July 14, 2005 6:39 PM CDT

This is Laura filling in again-- don't worry, though, Trish promises a big dose of journaling when she gets back online next week!

It sounds like Trish, Eli, and the Haynes crew are really enjoying the waves and warm weather. Trish and Tina have been soaking up the sun. Trish is happy to finally be losing her lilly white glow-- 9 weeks of flourescent lighting in the ICU didn't exactly give her a "base tan." As expected, Trish has been the biggest kid at the beach, playing in the waves all day long.

Today, Trish bought Eli a SkimBoard, which is like a mini surfboard that you ride across the shoreline. "Bless his heart, Eli's coordination is just like his Momma's. Thank goodness the sand is soft because he sure took some tumbles!" Aside from perfecting his SkimBoarding technique, Eli has also been collecting phone numbers from the cutest girls on the beach. Today, he spent the day with two (yep, TWO) different girls!

Now, I would be remiss if I didn't take this opportunity to mention (and brag!) about my kickball team's huge victory last night. My team, the Beavers, beat the (no longer) Undisputed Champions of the World 10-3. You might wonder what this has to do with the Hampton's but I will tell you, they are among the Beavers' biggest fans. Last year, when I first met Trish, Emma Grace, and Barney, and told them about kickball, they couldn't wait to see a game. Before long, Tina, Stanton, and Jeff were rallying for the Beavers too.

The whole bunch-- Barney, Jeff, Trish, Tina, Emma Grace, and Stanton piled into the Big Red Truck and came out to the field. Sidenote: Due to bladder exertion and the usual fits of laughter that came along with this family of six, Trish ended up enjoying the game from the back seat of the truck. It was no surprise that Barney and Jeff, quite the athletes themselves, were looking to sign up with the Beavers almost immediately. What other sport lets you drink beer on the field and settles all disputes with a round of Rock, Paper, Scissors?! Meanwhile, Emma Grace and Stanton led the cheering section, standing just behind home plate, kicking the fence yelling "Go WauraHajar! Go Beavers!" By the end of the night, Emma Grace had four fans falling all over her as she twirled around them in her ballerina outfit. And Stanton had one of my teammates, Patty, wrapped right around his finger.

Lucky for me, the Hampton's and the Haynes' have helped round up even more Beaver fans this season-- sweet Christal and her momma Chris, grandma Lois, sister Kylie, step-daddy Drew, and puppy Cupcake have become faithful followers. Of course, Christal the fashion queen, always wears yellow and green, our team colors!

It's pretty amazing, as a lot of you know, that Trish and Barney and Tina and Jeff and Chris and Drew and Christal find the time and room in their hearts to support their friends, even if it's over a silly bunch of grown-ups kicking a ball around a field. I know, going to a kickball game doesn't sound like much, but being at the hospital everyday and seeing what these families and kids have to face-- I stand in awe at the way I have been let into their worlds. That I can give them a hug- and they can find the strength in their hearts to give one back.

Please pray for our sweet Hampton's and all of our St. Jude families.

All my love,
Laura

Tuesday, July 12, 2005 8:55 AM CDT

This is Laura once again,
(Can you tell that I'm enjoying doing these updates?!)
I just talked to our dear Trish-- she and Eli are on the road, "rolling wheels and blowing smoke." The caravan of four, 3 Louisianans and 1 Arkie, is headed to South Padre Island and hopes to arrive around 1 pm. Trish says, "Shamu is beach bound!"
There are few things that make Trish happier than driving around in the Big Red Truck. I always loved seeing Trish and Emma Grace pull up, the diesel engine rumbling, all smiles yelling "Hey Waur! What're you doin'?!" One afternoon, my sister and I were walking in the park near the Target House. I noticed the Big Red Truck sitting at a stop light so we flagged down the Hampton's and Trish pulled into the park. Emma Grace was holding court in the back seat, eating something yummy from Sonic. In no time, though, she hopped down out of the truck and started shaking her biscuits on the side of the road!
Trish and Tina ask for special prayers for safe travels and good weather in Texas, as well as for our special St. Jude friends who are still fighting.

Love to all,
Laura

Monday, July 11, 2005 1:51 PM CDT

Welllll nowwwww ... Yesterday was the shopping day - and let me say, my dawgs are tired!!! That Tina is one serious shopper!! I thought my Aunt Judy was a loo - loo shopper but Tina has her beat!!!

We are having a really good time (considering I'm not wanting to leave the room today!!) but we did leave to go try find me an attachment for my laptop as being the highly intelligent packer that I am, I left my power plug at home. Well ... DUH!! AND I grabbed the wrong power plug for my cell. At least, I have power supply in the truck so I'm not totally anti-techno.

The Boyz went to Cabela's yesterday and floated the Guadalupe River today. Eli is having such a good time. We played putt-putt on Saturday night and had a great time. Let me just say, for me NOT being a putt-putter, I hit a hole in one the first hole. Stick that in your pipe and smoke it Mr. Jeff. Obviously, my sweet Emma Grace didn't take after her Momma in the golf department.

Just wanted to tell you all hello and we love you bunches and bunches. Thank you so much for your many prayers, love and encouraging notes. May God's Sonshine surround you!

Only By His Grace - Trish

Saturday, July 9, 2005 9:11 AM CDT

Hi Everyone,
This is Laura filling in for Trish the Dish. I've got Trish on the horn right now and she wanted you all to know that as of 3 o'clock yesterday afternoon, new vacation destinations for the Hampton/Haynes crew were finally solidified. Gulf Shores is officially off the list. Hearing that Trish and Tina were on their way prompted mandatory evacuation of the Alabama coast!
They are en route to San Antonio and South Padre Island in Texas. The saying goes, "Don't Mess with Texas." I say, "Don't Mess with TnT!"
Please pray for safe travels and our special St. Jude kiddos.

Much Love.
Waura, Trish's little sis.

Friday, July 8, 2005 2:50 AM CDT

Get-A-Way Day and time for R & R … (now, let’s throw Hurricane Dennis in the picture)

Yep, the packing is done and the big red truck is ready to roll tomorrow after the work day is done. Eli and I have got it in gear and got it all gathered up to head to Gulf Shores, AL. The thank you cards are still only partially finished and on the coffee table they will stay until I return to get them wrapped up. We are praying that Hurricane Dennis is changing his mind about the path. From what I’ve been seeing on the WeatherChannel … he doesn’t seem to be cooperating much. Tina and I have been talking a BUNCH about the situation and we’re going to keep a close eye on the TV tomorrow. You know, we just don’t have many hurri-cans in NW Arkansas so we’re staying on the cautious side. We’re getting together and hopefully, in Gulf Shores as Sweet Aunt Mo has so generously offered their condo for our retreat. I told Eli tonight I didn’t care if we went somewhere and dangled our toes in a watering tank … let’s just get away. We may end up in Toad Suck, AR, who knows. (And yes, there really is a place named that) You know, God’s got it all worked out as He always does.

There were several St Jude families that we lived with at Uncle Ronnie’s in 2003 that had said we’d have to all meet up for vacation time together in 2005. Of course, we were all hopeful that our children’s cancer would be cured and we’d have a reunion, so to speak. I’m not sure any of us even mentioned or anticipated that we’d be going without our babies. It has been so sadly strange, even leaning toward guilt that it is just going to be Eli and me. Daddy is planning on “rolling wheels and blowing smoke”, better known as truckin’ ya know. We are certainly going to miss him being with us and we are especially going to have a huge empty space without Emma Grace physically being with us. I feel she is always “with us” but you get my drift. She loved to "GO" period and always wanted to swim at the beach so badly but knew she had to get rid of Fred & Wilma first. That just never happened. I have this great picture that Gwen and Barrett gave to us of Emma Grace and it sits on my jewelry cabinet so I talk to her often. She has one of her silly grins plastered in this photo and it just makes me happy to see it first thing in the morning. So, I came up with a solution … I’m taking “her” with us … the picture I love is riding along. If only I could figure out how to get her sunglasses to stay on. (You are convinced I have completely lost my mind now, right??)

As you may suspect … the computer is going with us so we’ll are planning to be routine with updates but you know how I can be at times. Let me just say, I’ll do my best.

When visiting with my niece, Shelbi, this past weekend, she was telling me their youngest, Hudson, is in hog heaven … literally. You’ll recall the orange Power Wheels Harley that Emma Grace so persistently insisted upon getting last summer?? Well, we gave it to Jimmy and Shelbi for the boys to enjoy. Needless to say, Hudson has staked his claim and if anyone tries to jump on it, he adamantly states, “THAT’S MY EMMA GACE’S!!!” He now can keep up with the big boys in the cul-de-sac. Oh she would be so proud. We are so thankful they are enjoying it so much. Emma Grace sure loved her “hawg” as she called it. I will never forget as long as I live her lying across my lap one evening before heading to bed (as we so often did for Momma & Emma Grace time). Out of the blue, she pulls my face to look at her and says, “Wet’s talk.” She told me that when we get to Wal Mart the next afternoon, she wanted that motorcycle she had seen. Once I realize WHICH motorcycle she wanted I knew I had my work cut out for me to talk her out of it and maybe wait until Christmas. Well, I gave it my best shot and she would listen but 10 minutes later she would justify why she needed it. When we went to WalMart the next day, nothing in the store seemed to suit her fancy and she’d keep leaning in the cart and say, “Wet’s go back there and just wook at that orange motorcycle.” Barney and I had an “emergency meeting on aisle 7” in the toy dept. We’re not usually such softies but we could tell she really, REALLY wanted it. Barney and I are so thankful we let her “have her way” concerning her ‘hawg’. We got our money’s worth before it was even put completely together. You could see the pure joy all over her face and she had yet to ride it. Once she took it for her first spin, she was beyond elated. Now she could “ride” with Bubba in the yard as he has a dirt bike. She was full steam ahead without wheels. Once again, thoughts of how very much she thoroughly enjoyed her ‘hawg’ makes our hearts smile brightly.

Well, I should try to get some shut eye (more like a cat nap now) as tomorrow I’m sure will be a much anticipated, anxious day. Thank you for your continued prayers – please say an extra for the Haynes’ and our traveling mercies. We are looking so forward to spending some TNT time together and I just know, somehow, someway, we’ll get that done. We love you all more than you can imagine. May His Love surround you!

Only By His Grace - Trish

Wednesday, July 6, 2005 1:57 AM CDT

Hey Crew!

It has been a whole month since Emma Grace flew to Heaven and I have to say, time is obviously of no essence to me. It seems like ages but to her she knows no time anymore. Won't that be grand someday??

The weekend proved to be a good time out for family … Barney got to come in Friday night and doesn’t leave out until Tuesday. It has been a long week with my new job (which I love) but still trying to adjust to our new world on a daily sometimes hour to hour or minute to minute basis. I’m so thankful Barney was able to be home this weekend. We also had the blessing of sweet Laura coming to spend the weekend with us. She has become such a part of our family over the past 1 ½ yrs so we got to spend some much needed quiet time together. “Waura”, as Emma Grace called her, got to finally see all the things Emma Grace had told her about … her horses, Sam the basset, her room, her toys, her friends at church and of course, everywhere we looked Emma Grace was present. Thanks Laura! You cannot know how much I enjoyed having you here. And I loved our countryside drive in "Go-Go"!!

After church we headed out to Lake Tenkiller for the afternoon. My nephew Jimmy, wife Shelbi, their 4 boys – Hayden, Harrison, Hilton & Hudson, nephew Joey, wife Kristen with baby on the way, niece Danielle and daughter Cadence, Nanna, Poppa, Chuck, Kellye, Barney, Eli, Laura and Me … WE HAD A FEAST!! The Boyz grilled steaks and we brought side fixins. We sat circled around the campsite which was a familiar scene we had many times in the past. I think everyone was “in tune” with missing Emma Grace. It just felt like she should be ripping through the camp in high gear, loving on her little cousins and being her spunky, witty little self. As much as the tremendous void of missing Emma Grace was present it dawned on me this was the first time we had went to the lake since my brother Jerald and sister Dianne’s passing. They loved being at the lake and the 4th was always a time for us all to get together. I would just imagine Emma Grace, Dianne and Jerald have found their own beautiful camping site with the clearest lakes and streams Heaven has to offer. I'm sure Jerald has taught her to ski by now!

Well, I mentioned earlier that Eli was spending the weekend with the crew at the Lake and I was certain water sports were on the agenda – and Eli learned to knee board! He couldn’t wait to show Momma and Daddy his new accomplishment. Barney, Laura and I went out in the boat with Jimmy, Hayden, Hilton and Eli so they could do their tricks for us. The boat ride was wonderful … it had been really hot so being out on the water with the breeze blowing was quite therapeutic. We even took a dip in the middle of the lake to cool off.

I know this will be a huge surprise but I decided I couldn’t let the youngsters “skunk” me so thought I’d give the ole skis a shot again after not being on water skis in well over 10 years. I used to ski a lot and loved it but that was many moons and poundage ago. My real worry was 1) is this boat or ANY boat big enough to haul my biscuits out of the water?? 2) can I still do this after so many years?? and 3) will I be able to move a muscle after this?? OH MY!! The ole grey mare REALLY ain’t what she used to be!! I did get up after my 2nd try and skied like I had good sense (trust me, my ‘good sense’ was out the window at this point). I did find the answers to the above questions and let me just say 2 out of 3 wasn’t bad.

Laura decided to brave the waters as well. (Besides, the pace was now set). I am very impressed as she has only skied maybe 3 times in her life and of course, she got up!! Bless her heart the skies weighed more than she did but she got them lined out and off she went. She was really glad she consented to trying it again because she had a ball. We knew no one would have to rock either one of us to sleep Sunday night but was certain someone may have to help us out of bed.

Barrett, Gwen, Dalton and Brandi came out to set off fireworks after we got home from the lake. Dalton and Eli were in charge of “blast offs.” About the 3rd one to go fell over and flipped around and shot towards us as we were relaxing (recouping) in the lawn chairs. You have never seen me move that quick! I headed for the front door with Laura on my heels. Barney and Barrett were recipients of two blazing blasts that ricocheted off the tree leaving Barney with a custom sideburn. We revised the launching pad and things ran much more smoothly after the initial wake up. Laura got in on the action and helped the boys light fireworks. Who was really the kid?? Hummm … (smile) They set a circle of morning glories in honor of our precious Emma Grace. It was Eli's idea as those were her favorite of all the fireworks. Not to mention they were pretty and quiet. She never liked the noisy ones. But the morning glory circle was beautiful and just perfect.

Aunt Judy had us out for dinner on the 4th which was another good time spent with our dear family for fellowship. We later went to Prairie Grove for the Basic Blowout for Gary Combs birthday bash fireworks. Basic Construction is who Barney worked for when he was dump trucking. They had a whole day of festivities with a huge cookout, helicopter rides, live band … from what we understand it was quite deal. The fireworks display was amazing!! I’m not sure PG will be the same again. The local newspaper said it was expected to be a $30,000 expense just for fireworks. It lasted over 45 minutes and I think the newspaper must have left out a digit on the cost of this show. It was fabulous!!

Riding in the boat Sunday of course, reminded me of our baby girl. Last year we went to the lake with Gwen & Barrett. She loved the water and did her best to talk us into letting her get wet. We consented only to the knees and she really did pretty well. She got to drive Larry’s boat which made her day. He was so sweet and patient. He let her driver wherever she wanted and he only took the wheel when the shore was an obstacle. She actually did get wet up to her waist “out of necessity” but she didn’t get Fred and Wilma wet. Emma Grace drove us around for hours and we wouldn’t trade that time for all the tea in England.

Eli and I are headed to Gulf Shores, AL with the Haynes’ on Friday. (IS IT FRIDAY YET?!?!?) We are looking so forward to just getting away and having some much needed Eli / Momma time. Barney will probably be trucking but we may get to see him en route who knows. We are staying with Mimi Sharyn Friday night which we are looking so forward to as well. Sharyn and Monica, look out! We’ve got some huggin to catch up on! We are seeing Tonya Nason on the way Saturday around Winona, MS which is where our dear nurse Ashley is from. By the way, I talked to Ashley last week and little Mr. Jack is doing very well. Lizzie brought me pictures of him when she came for Emma Grace's service and he is such a doll. The rest of our weekly agenda is beachin' it. We are looking so forward to seeing our precious Haynes’ and their families. Tina and I have already been talking about having TNT time again. We are headed back thru Memphis the 16th to spend with Nancy Mills and crew… can’t wait to see our Nancy again.

Let me just say … in the many conversations I have had with Nancy especially over the past 3 months, we have discussed our girls “six ways to Sunday” as the saying goes. When it all comes down to it, the summary … it’s always the same. No, we would love to still have our girls here with us and as much as we loved them, God loved them more. We look back on their days of “Pioneering 4 A Cure” and they did it. And boy oh boy, did they! St Jude learned so much for treating neuroblastoma it is mind boggling. As heartbroken as I am to be without Emma Grace, I’m as equally thankful that the knowledge gained through her and Ali's transplant will save someone else’s child.

We love you all and thank you for your continued prayers for all our St Jude families. May your week be filled with His Sonshine and know we thank God always for blessing us with you!

Only By His Grace – Trish

Monday, July 4, 2005 12:13 AM CDT

Our day to celebrate INDEPENDENCE ... Thank you Lord!

Quick note to wish everyone a Happy 4th ... our day at the lake was eventful (more details later). Emma Grace seemed to be everywhere we looked or the longing for her to be there to enjoy.

Much love to everyone and hope you are enjoying your holiday weekend. Thank you for your faithful prayers for our family as well as the many others who continue to be in the fight and those whose Angels have gone home. Holidays are never the same so please remember those dear families as well. May His Sonshine surround you always!

Only By His Grace - Trish

Saturday, July 2, 2005 5:06 PM CDT

Blessed 4th of July to All!

Sorry for the delay in updating ... Barney arrived home last night and we went to Lake Tenkiller to take Eli to stay with my nephews Jimmy, Joey and families who are camping there. We are all going after church tomorrow for lunch and water sports. I'm quite sure there won't be much "water sporting" for this ole chick! Just relaxing.

The last couple of days have been less than fair. Each day goes by and my missing meter goes up. When Emma Grace was diagnosed I thought our world came to a screaching halt and it did but she was with us. It's similiar to that same upheaval but not even close. I think how bright heaven must be with every thought of how her smiles could light up a room not to mention my heart.

We pray your holiday is safe and enjoyed with your family. We love you more than you'll ever, ever know. Thank you for your continued prayers not only for our family but those precious babies who continue with their fight.

As Emma Grace would say as she patted her heart, "I wuv you right here."
Only By His Grace - Trish

Thursday, June 30, 2005 5:51 AM CDT

"The ole grey mare just ain't what she used to be ..."

Remember that old song?? Ok, so I'm dating myself but then again that song seems to describe me. I haven't quite found my "groove" yet in getting back into the swing of the working world. Needless to say, this entry will be every so short.

We got Emma Grace's "memory marker" (sounds better than headstone, dontcha think?) selected and it's being ordered as we speak. I almost felt like putting it off as it feels like the last thing I can physically do for her. But it just needed to be done and of course, we want it to honor our precious baby and most of all, God. It's another one of those reality busters when it all still seems so surreal.

Just wanting to thank you all for your wonderful messages, love and prayers. We thank God everyday for such loving, faithful friends who continue to lift us to His Throne. Please continue to remember all our precious babies who continue their battle. We love you all!!

Only By His Grace - Trish

Missing our girl more each day ... I promise to catch up with a "heart smile" story next entry. love ya'll!

Wednesday, June 29, 2005 5:32 AM CDT

This is likely to be pretty brief ...

Well, "VIA THE LONG ROUTE" Barney finally made it to Memphis Monday night ... not before he saw the majority of the state of Arkansas and stopped at every crack in the road. He is in Minden seeing our dear Tina & Jeff as he loads out of there today. Please pray for his safe travels.

My new job is going really well ... there just aren't many things that feel "right" at this point but being with Mike & Marianna at their trucking business fits. There is no other explanation except that God has it all worked out and knew that's where He wanted me.

Trying to get back to a semi-normal is a transition that is a bit harder than I anticipated. I know the alternative of staying home longer is not an option. Barney reminded me that when Emma Grace relapsed I wouldn't even open the shades, go out the driveway, much less out of the house and wouldn't even dress. And that was with her with me. I know staying busy is what I need right now ... trust me, I have plenty of time to miss her because that happens to be 24/7.

I'm sure you've heard me mention Emma Grace's love for makeup. She had makeup in every purse; lipgloss (a must!), eyeshadow, perfume, you name it ... she had it. I made the mistake of getting her a real eyeshadow / blush set at WalGreen's that had a boo-koo of shades. Well as Tina and Laura will confess it doesn't come off very easy. She had some "play" makeup at home that I kept put up for the same reason. But on occassion she would get it out to use on her next "Clown" culprit. In finding this set of makeup, I recall her sitting on her bed in the Indian hospital at Tahlequah for a chemo fever. The nurses are all piled in the bed as well as Dr. Lewis. Emma Grace had a blast making all of them up, including Dr. Lewis. It's not every pediatrician that roams the halls with MeMe Rogers Blue eyelids. It was a riot and there are pictures on the video that prove her makeup matched his. She, Christal and Tina would sit for hours playing makeup and fixing hair. Tina was sure a good student even when Emma Grace wrapped the comb to Tina's scalp. That was a time we surely thought the scissors would have to be used but we made it without them. We have several pictures since of her makeup artist skills and I have to say they sure make my heart smile.

May your day be full of Sonshine and know that we love you more than you can ever imagine. Please continue to pray for our kiddos who continue their battle of fighting cancer and other life threatening illnesses. Thank you for being such faithful prayer warriors.

Only By His Grace - MOmma Trish

Monday, June 27, 2005 11:07 PM CDT

"Normal" is just a setting on the dryer ...

My first day … oh my, Heaven sent. God knew … He just knew. Mike, Marianna and family are absolutely incredible and are God sends … period. I had to use grey matter in this ole brain that I haven’t had to use in awhile but I’m thinking there still maybe hope and there’s still a little left up there. Ha! Eli and I came home this evening with my tail feathers draggin’. It’s going to take me a bit to get back in the groove.

The morning started pretty rocky … just a lot to start the day with; new beginnings while still trying to say good-bye or as I prefer “see ya later”, Barney leaves to go back on the road. It was just all falling down around me and I knew the last thing I wanted to do was show up first rattle out of the box in complete meltdown status. Then I got to the angel garden to see that Jake McBride had been visiting with flowers and KIX 104 sticker on the vase. He’s such a darlin’ ... and I couldn’t help but think of Emma Grace hanging on his neck, sitting in his lap, loving as only she could love. Ok, so the meltdown got worse before it got better. I drove to Bob Kidd Lake and sat, recouping and collecting. The lake was as calm as I’ve ever seen and the morning sun was glistening across the water. God reminds me once again … He’s right here, no matter how good or how bad the day may be going … He’s here, unconditionally – just as His love.

Barney has had an interesting day … he was catching a bus from Fayetteville to West Memphis. Well, for some reason the bus was cancelled and it’s my understanding the bus station was required to get the passengers to their destination regardless of an actual “bus”. So, Barney has ridden all day and I mean, ALL day to get to West Memphis – normally a 5 hour ride but I think he is to arrive somewhere around 10 ish. Bless his heart … I hope he got lots of sleep.

I let Eli drive home this evening … he’s getting so big so quick. While he is chauffeuring me home I recall how it used to be a power play on who could convince Momma they needed to drive the most – Eli or Emma Grace. She could be pretty persuasive even for Eli so he would usually let her drive. (He’s kinda soft like that anyway) She loved to sit on the console or in my lap but she would have to take her paci out of her mouth because “big girwls don’t drive with pacis in their mouth, do they Momma?” The radio would have to be adjusted – loud of course – every knob, light or button switched and away she would go. Her favorite was to start giggling when we got to the driveway as she would intentionally drive in the grass or try to hit the fence just to get a “rise” out of me. Drama, it was all about DRAMA with that precious girl and the more drama the more the laughter exploded. Just echoing thoughts of those belly giggles warm my heart. How thankful we are that God shared her with us … sometimes we just need to let our memories keep the laughter growing in our hearts. Sharing stories about Emma Grace makes my heart smile … I trust they will for you as well. I certainly don’t mean for them to be sad or worse – boring because one thing’s for sure she is and was neither.

My sweet Cousin Nancy came by for a precious visit this evening and she was bearing gifts … her gift of song that she recorded today, “This I Know for Emma Grace”. Talk about God sending peace when I needed a good dose today / tonight. Thank you Nancy for following God’s lead and allowing your music to minister to so many. Thank you just isn’t enough. You are such a gift from God and we thank Him for sharing you with us. We love you!!

Thank you for your continued prayers … what treasures God has given by sending you to walk each step, no matter how near or far. We love you bunches and bunches!

Only By His Grace – Momma Trish

Sunday, June 26, 2005 9:23 AM CDT

Sonday Greetings to All!

This is likely to be a bit brief as I have a wondermous allergy headache this morning. Though I’m not sure it compares to the heartache as I continue to pray God is easing. Everything and I mean, EVERYTHING, we do reminds us of Emma Grace or just the longing for her to be here. The major reality check is visiting her at the “angel garden” (adopted term from Tina because it’s perfect). Emma Grace loved placing flowers for our relatives and friends who have gone home … now, we visit her site and leave her flowers. Jeff Haynes will be so proud as yesterday Mrs. Neta Rae fixed me a small bouquet of purple and yellow daisies. You know how she loved those LSU Tigers!

Yesterday was another dose of “reality” as Barney, Eli and I went to see our friends at Luginbuel Funeral Home to give them our sketching for Emma Grace’s headstone so they can start the process. Barney and I have searched the internet high and low and fretted over it being perfect but have decided she sees perfection in a whole new light now. So, we are just giving it our best to honor our precious baby girl. I’m sure she would tell us “hey, it’s a wrock just make sure you spell my name wright!” The grandest thing is she is WAY too busy with dancing, singing, playing and praising in the presence of Jesus to worry about what’s going on here.

Monday is a new beginning for us all … (as we have found everything to be new beginnings and “firsts”). Barney is going back to work at Tango Transport. He is riding a bus to West Memphis to pick up a truck going to Sibley, LA. (That tells me that he gets to see Jeff and Tina before ME! Ha!) Eli is working with Poppa at the 12 acre subdivision that he is constructing. And … I start my new office position with Mike & Marianna Traylor at their trucking company in Prairie Grove. We thank God for placing this in our lap as He took care of all the details – as He always does. Please pray as we all go into the work world adjustments especially as Barney is traveling the highways again. We all have a new little angel to watch over us and I’m sure she will LOVE riding with her Daddy.

The last update still blows my mind (what mind I have left!). Daphne’s Journal, which we obviously didn’t know existed, was incredible. We trust you enjoyed reading about Miss Emma Grace as much as we did. She was sent to us with a mission and God so richly blessed her in doing it perfectly. Ok, with an occasional, feisty tantrum. HA! So, in keeping with the “rain” story, it brought a great Emma Grace story to mind that I will share … even at my expense.

Emma Grace was in isolation quite a bit after the recent transplant so therefore, we had to park at the “Isolation Entrance”, gown up and go to the Medicine Room or B Clinic. This particular day it is POURING!! Nothing would do but Emma Grace wanted to use her purple umbrella – SMALL purple umbrella that her Daddy had bought her. I told her it wouldn’t do anything but cover my head but she would not waver so the purple umbrella won. (Actually – SHE won, surprised?!?!?) So, I gather her up; throw a blanket over her as she holds the tiny umbrella. Needless to say, she’s fine, I’m soaked! We happen to be seeing our dear Dr. Barfield aka Dr. Ray on this visit before heading to our daily Medicine Room ritual. Dr. Ray comes into the room (never knowing what to expect from Emma Grace next) and before he gets the door closed Emma Grace exclaims as she is laughing, “Dr. WRay, it’s wraining hard outside and my Momma’s biscuits (rumpus) wouldn’t fit under my perpull umbrella!! She got her biscuits WET!!!!” We all fell out in laughter!! Leave it to Emma Grace to remind everyone that my biscuits are too big to fit under her umbrella. Who cares … it was worth hearing her telling the story and to of all people, she chose her Dr. Ray as she knew he appreciated a good “wet biscuit” story.

You all are amazing … the cards, guestbook messages, emails, calls are so heartwarming and uplifting. God prompts your kindnesses at precisely the right moment that we need it most. Thank you for your continued prayers, friendship and love. We can never thank you enough for walking this journey with us. God is so good ... We love you!

Gotta run or I'll be late for church. Have a blessed Sonday!!

Only By His Grace – Momma Trish

Friday, June 24, 2005 9:18 PM CDT

Hey Crew ... today has been one to stay busy (we seem to "do better" if we're busy). Barney and I split up the lawn mowing while Eli tackled the weedeating. He ended up going all the way around the fences down the road and boy, is he pooped. It sure looks nice though.

He had a grand time at Nolan & Rosa Richardson's camp. I think he was disappointed the week had already come to a close which tells me he had a great time. The Richardson's are very sweet folks and certainly understand what Barney and I are going through. They lost their daughter, Yvonne, 17 yrs ago to leukemia, A.L.L. She was only 15. So they have certainly "walked in our moccasins".

My brother, Chuck, called today and said he had "googled" Emma Grace's name just for the heck of it and to his surprise (and ours) he found this great story that I want to share with you all tonight. We met the author, Daphne, last Easter as we had planned to spend with Maci Morgan and her family. Maci ended up getting sick and going to The Jude so we show up to have Easter lunch and egg hunting festivities with folks who had never met us before. Maci's mom, Melanie, laughed later telling us that she didn't want tell us until we had almost arrived that they weren't going to be there. She knew we would back out and she's probably right. But God had it all worked out, so we went and we so glad we did. We had a great time, the kids had a blast and the "extended" Morgan Family became very special to us just as Maci and her family has. God has such a unique way of making blessings in every situation. He is so very amazing! Hope you enjoy the story that Daphne shared on BabyCenter.com.

Thank you for your continued prayers for our family as well as our kids of St Jude who daily brave their fight.
We love you all and thank God for you always.

Only By His Grace - Momma Trish

"EMMA GRACE"

Author: Daphne's_Journal Jun 7, 2005, 9:44 AM (PDT)

Dear Readers: This journal entry is different from usual in two ways. It’s not a regular Thursday entry and missing from it will be my usual self-deprecating humor. In its place, hopefully, will be a touch of the grace that Emma Grace gave to this world.

"Whispers From Heaven
Yesterday was a typical Monday for me. I picked Gracie up from daycare and she was in her usual Monday afternoon mood – the one I call full of spit and vinegar. I had forgotten her after-school snack and sippy cup of water, which was doing little to enhance her attitude. I needed to stop by the grocery store to pick up some jalapeños for our chili for dinner. As we pulled into the grocery store parking lot, the heavens let loose. It was one of those hard fast summer rains that the south is famous for. “Great”, I mumbled to myself. How was I going to get Gracie into the store without soaking her? Just one more thing added to my Monday – I could feel the beginnings of a migraine creeping up my neck. What were my options? Get the umbrella out and try and manage it and her – cover her up with her blankie and then deal with it and her – forget about the jalapeños – who needs flavor in their chili. Just then, I heard something whispering in my soul. “Daphne, it’s only a little cleansing rain. Why protect Gracie from it – let her enjoy it.” I listened. I got Gracie out of her car seat and put her down in the parking lot. We walked into the store, rain soaking both of us. We held hands and stomped in water puddles and Gracie giggled, the rain washing away her bad mood. It was a little after four in the afternoon. We went on in the store and of course, Gracie pitched a multitude of fits, but I was still glad we’d had our little dance in the rain. It wasn’t until late last night that I learned that about the time Gracie and I were playing in the rain, Emma Grace Hampton was leaving this world, flying home to Heaven. Coincidence? Perhaps. Or maybe just maybe that little whisper of a voice I heard was one of Emma Grace’s first acts as an angel.

Meeting A Spirit-filled Angel
I met Emma Grace on Easter Sunday of 2004. Steve, Gracie, & I were visiting my sister’s family. Gracie was not quite three months old and I was still in that early stage of motherhood where I was afraid of everything – afraid of SIDS, afraid of driving with her, afraid that she wasn’t getting enough to eat, afraid that she wasn’t pooping enough or that she was pooping too much. On Sunday afternoon, my brother-in-law’s family was coming over for a buffet brunch. About 11:00 that morning, my sister’s sister-in-law called and asked if they could bring another family with them. My sister’s eight-year-old niece has a type of leukemia and is a patient at St. Jude’s in Memphis. The family that her mother wanted to bring also had a child with cancer receiving treatment at St. Jude’s. Emma Grace was three years old and had a type of cancer called neuroblastoma, a cancer that, until that day, I had never heard of. (I’ve since learned that it is a horrible disease that robs too many families of their beloved children). My sister immediately said that anyone was welcome in her home. So, we prepared for the arrival of Emma Grace and her family. We knew that Emma Grace was a very sick little girl, that her cancer was relentless, that her family was reaching the end of treatment options and that her chances of long-term survival were not great. I was expecting a frail, sickly child, one who would spend most of the afternoon lying on the couch. I don’t think I’ve ever had a bigger misconception about anyone.

Emma Grace burst into my sister’s kitchen that afternoon, dressed like a princess for Easter. Her dark curls bobbed as she ran and her blue eyes sparkled with mischief. She changed from her princess dress to clothes more practical for an Easter Egg Hunt and she joined the other kids darting through the yard looking for plastic eggs. She would stumble a little each time she bent to pick up an egg; her balance was off because she carried a five pound St. Jude backpack holding her medicines and fluids. But, nothing deterred her. She laughed and squealed with delight. I wish I could have bottled those childish giggles from all the little ones as they ran through the yard… It was a remarkable day. Talking to her parents, Barney and Trish, was uplifting. They were full of hope that the treatments options they were pursuing would be Emma Grace’s cure. Yet, they were fully aware of the odds stacked against them. They were living each day to the fullest with their baby girl, trying to fill her life with joy during difficult times, trying to let her be what she most wanted to be: a happy little girl.

Emma Grace and her family gave me something invaluable that day: a glimpse into the life of a family struggling every day for the life of their child. My new mommy worries seemed so much less overwhelming after meeting them. They showed me joy in the midst of sorrow, hope in the middle of a trial that I can’t imagine, and a faith that gave them peace in the middle of a storm of unimaginable proportions. That faith, that God holds them all in the palm of His hand, gave them the strength to face their darkest days.

Fly high, sweet Emma Grace. Trish, Barney, and Bubba Eli: my prayers are with you and please know that your sweet angel touched all those who were blessed to meet her."

Thursday, June 23, 2005 11:39 AM CDT

I Hope All Is Good

It sure feels good to be home again. We decided to come home last night instead of this morning considering how Trish loves to stay up late but hates to get up early. We would have had to get up before the chickens to get the sheets and towels washed and dried before we left. Since Trish has to pickup Eli between 11:00 and 11:30 this morning it was best we come home last night. We had a wonderful time in Branson, we ate, slept, and ate some more. We did take in one show while we were there; we went to see David Coperfield’s World of Illusions Show. Please do not ask for details, all I will say is that it blows my mind. (It does not take much for that anymore) We had fourth row seats center stage and all I can say is that it was amazing to watch. Trish and I have discussed it over and over and neither one of us can even begin to guess how he does it.

It was so nice when I went outside this morning at 6:30 to feel the breeze blowing and here all of the different birds singing their songs. Emma Grace loved to sit in may lap and listen to the birds and ask me which one was making a certain song that she had locked onto. Our favorite always seemed to be the mourning dove and the mocking bird. We would listen and try to see which ones were doing all of singing. It was always funny to watch her try and imitate a bird whistling at another bird. While I was sitting outside I looked across the field and spotted deer feeding about half way across the field. Sissy loved to crawl up into my lap and help me drive down the dirt road once we turned off the hwy, she would always say common dad lets look for deer. She was always amazed when we would find some deer crossing the road or out in a field, she loved to see the babies with there mommas. She knew the special bond of a baby and its mother, Sissy might have been Daddy’s Girl but rest assured she belonged to her Momma when it mattered the most.

Trish is gone to pickup Mr. Eli as I try to type this update. When we checked on him on Tuesday Mrs. Richardson said he was having a ball and that they were headed to the pond for some fishing fun. I hope Eli had a ball getting to be a 13 year old boy again. He has had to grow up way to fast and give up so much. Not only did he have to deal with Emma Grace’s problems but he had to give up Momma and Daddy as we were in Memphis. He weathered the storm and now we are trying to help him adjust to all of the fall out form the storm. Our KKIX 103.9 morning show disc jockeys get the credit for getting Eli into camp this week. The guys said it was time Eli had a little It’s All about Eli time and worked out all of the details. THANK YOU JAKE, ALAN and KKIX. Coach Richardson coached the Arkansas Razorbacks basketball team for several years, not long after coming to Arkansas he and his family lost a daughter to A.L.L. and as a way of carrying on her legacy the Richardson’s have started the camp for kids. Thanks Coach and Mrs. Richardson for opening your doors and your lives for the future of tomorrow, are children!

We would like to thank everyone for the prayers and guest book entries. It is so good to read how our baby that most have never met has touched so many lives. GOD sent Emma Grace to us with a mission to do and she did it with style and grace. We love you all and thank you.

GOD IS GOOD;
ALL THE TIME;
Emma Grace’s Daddy

Sunday, June 19, 2005 7:24 AM CDT

One whole week since Emma Grace’s Life Celebration services and it seems like ages ago. We only thought our time concepts were warped until now.

Eli is packed and ready to go to Nolan Richardson’s youth camp enrichment thanks to our dear friends, Jake McBride and Alan Woody of KIX 104. God certainly had the timing perfect for Eli to have a time to kick up his heels like all little men should. For those of you who know what a procrastinator I am, it will surprise you to know Barney and I are already packed as well for our getaway. Gee … ya think maybe we’re ready??

Emma Grace story to make our hearts smile … I finally developed film this week that was all the way back to at least August of last year. In reminiscing through roll after roll, two things come to my heart: first, oh how we miss her so and second, didn’t she love to have fun!! What joy she brought to so many and how thankful we are that God allowed us to share such a little pure heart with the lives of others. One picture vividly and immediately took me back to days at Uncle Ronnie’s house. As you know, every Sunday our home-home church would call for “speakerphone” services. It was always a GREAT thing the mute button was accessible as our room always seemed to be bizzy. This precious picture shows Emma Grace and her little man, Stanton sitting in the doorway of our room, bibles in hand, their favorite pups both named “Jabu” that Gerhard & family gave them and they are worshipping and singing. Not only are they worshipping with us but they are sharing it with whoever may be walking down the hallway at that time. I have to say that’s exactly what Jesus wants us to do … Open the doors of our hearts and let His love shine. This picture speaks volumes of these two precious children doing just that.

Last night we went to Brodie and Monie Collins for a good ole gospel jam session, as I called it a “pickin & grinning” gathering. Brodie and Monie are friends from Weddington Church that recently made Emma Grace and Eli honorary puppeteers. We had a wonderful time in fellowship and song. We love hearing stories about Emma Grace and what a little live wire she could be. It also did our hearts so good to unwind and sing praises to God for all He has done. God is so very good … like Barney reminds me … all the time.

We love you all and thank you so much for your continued prayers. The days seem to run in a blur but I know that God will clear our minds as we start continue our life in a whole new way. Please remember Christal who starts chemo again next week http://christalinfo.servemp3.com, Jake is having a PET scan done on Monday and we are praying for clear scans. www.caringbridge.org/la/jakeowen, and Bella was back in Memphis having follow-up tests done, they found suspicious areas which meant they had to stay longer for more tests. www.caringbridge.org/fl/bella. Also, for our traveling mercies to Branson and Eli's safety at camp this week.

Also, special prayer request: Barney is returning to work with Tango on June 27th. This is the company that he was with while we were living in Memphis. AND God has laid an opportunity in my lap for me to return to work at a trucking company in Prairie Grove. I will also start on June 27th for Mike and Marianna at Traylor Shavings Inc. I said that God would have to paint me a clear picture on what He wants me to do as my mind is a bit fuzzy to say the least. (That sounds like Emma Grace on the “milky stuff”) Anyway, we are so thankful He did just that. I will be helping out in their office and be right close to Eli when school starts. There no other way to say it except it’s perfect and I’m really looking forward to it. In our world where nothing seems right at the present – this just fits and feels right. We feel God’s hand leading us into this transition. As we were leaving the Traylor’s on Friday one of the trucks was pulling out and blew his TRAIN HORNS!! You all know how Emma Grace and I LOVE TRAIN HORNS!!! It was priceless and made my heart smile!!

Thank you again for your continued prayers, encouraging messages, calls, visits and most of all your love. We thank God always for you and pray for His blessings to cover you.

We make no promises for updates while we are on this much needed sabbatical ... but we are taking the computer with us so who knows. We will hopefully be back on track by Thursday / Friday. Have a blessed week!

Let’s Keep Looking Up Together!

Only By His Grace – Momma Trish

Friday, June 17, 2005 10:53 PM CDT

Meltdowns even come with shredded cheese …

Breakfast is on the table and I go the frig for shredded cheese – Emma Grace’s staple for every meal. How in the world can you cry over shredded cheese?!?!? Two weeks ago I wouldn’t have been able to answer that question but I honestly can now. But then God turned my tears to a remembrance of our little Angel and a smile that warmed my heart.

Barrett & Gwen were out for supper last year … Barney told Emma Grace to slow down on the shredded cheese … (she loved it and would eat it when nothing else would do). Barney told her, in jest, that he was going to pat her hinny if she didn’t stay out of the cheese. Of course, she came by the table and “snuck” one more bite and Daddy saw her. He tapped her little biscuit (trust me … it was LESS than a tap) and she wheeled around with her immediate response, “Well, that wasn’t very nice, now was it Jesus?” We all ROARED!!! And her ornery little smirk turned to full blown smiles because she knew once again – she prevailed over her Daddy! Wonder why she was SO spoiled, eh?!?!?

Today, for no special reason, was tough – not just on me, but Daddy and Eli as well. Eli, bless his heart, is so thankful for Daddy and me to be home but he’s equally heart broke. Our hearts just ache for her. Really it is selfish because it’s “us” that aches … she’s happy, perfectly healed and running wide open as usual only now with Jesus to run, sing and dance with her and her precious friends. The image of Him and her is so comforting, yet the missing her just doesn’t end and I don’t think that will never change.

Eli leaves for his camp enrichment on Sunday then Daddy and I are headed for our sabbatical as well. It will do both of us some good just to hide out for a few days. For 2.8 yrs we have been completely focused on getting Emma Grace well – our lives virtually stopped for the first 9 months of her treatment, after moving home Daddy and I went back to work while Emma Grace & I traveled once a month to The Jude, then for the past 15 months during relapse treatment, transplant and ICU we zeroed in again on getting her well. Chuck, Barney & I drove around NW Arkansas yesterday exploring all the new developments sprouting up everywhere and it seemed like we had traveled to a foreign land. Not just because of the vast changes our NW corner is experiencing but it seems unreal. This is home-home and we love it here … so, why does it feel so very strange? I think it would be best described that a huge portion of our heart left with the blue-eyed beauty that God so lovingly graced Barney & I with. I’m so thankful God’s arms are mighty and strong because He is literally carrying us through each and every minute of the day.

Ok … here’s something to lighten the mood a bit (good at changing the subject, aren’t I?)

This just struck my tickle bone – and it just seems so appropriate …
Q: What did the DNA say to the other DNA?
A: Do these genes make me look fat?

Considering Emma Grace received my DNA through the recent transplant – you reckon she wondered the same thing?? (smile)

We love you all more than you can ever, EVER know and we are humbly grateful for your loving kindness that you show to us as well as our families / St Jude families. Please continue to remember all our precious babies who continue their battle. May the weekend surround you with His Sonshine. Thank you for looking up with us!

Only By His Grace - Trish

Thursday, June 16, 2005 9:31 AM CDT

NOTE: CHECK OUT THE GUESTBOOK FROM THE ANNOYMOUS "JAKE OWEN BELIEVER" ... IT IS PRECIOUS!! THANK YOU ... WHOEVER YOU ARE!!! (You know ... you WILL be revealed at Heaven's Gate, don't you?!?!)

Well, don’tcha just love it when the internet is down?? I actually sat down to update last night only to find out “Houston, (aka PGTC), we have a problem.” So, I chose to stretch out on the couch around 9-ish and that’s where I found myself still there about 5 this morning. I must be having to adjust to sleep in a real bed again … I may have gotten used to the St Jude “Suite” couch being my slumbering apparatus. Everything seems so out of whack … including my sleeping habits. Gee … go figure.

3 firsts on Tuesday – Tina has reminded of the “firsts” that are sure to come, so to be prepared.

Wednesday Barney and I hung the bird feeders filled with seed, the humming birds have been begging for their nectar so we filled them. Emma Grace LOVED feeding the birds – it was quite the ritual, (her way of course ha!), watching the birds or the squirrels or the butterflies or the rabbits or the horses. Oh, her horses – it is so serene to watch her colt, Emma’s Little Flit – “Elf” for short, following her momma, Every Bit of Flit – “Flit” for short. The one time we came home together in March of this year Beetle had Elf tied to the tree by the drive when we drove in. Emma Grace was thrilled to see her baby again. It was the only request for getting out to the truck was to pet her. We spent a lot of time with Emma Grace and Eli – and of course, with Sam, the basset – in our front yard just enjoying what God has created. Barney, Eli and I find ourselves spending a lot of time in the yard now … there’s a strange emptiness, yet comfort at the same time. Everywhere we turn we see her in the many, many things she loved. And there just wasn’t much she didn’t love.

I heard the train and his train horn (which is mine and Emma Grace’s fav – THE HORN!) in the distance first thing this morning ... it SO made my heart smile. Immediately it brought to mind the many times I was intentionally late for work, late coming home or even would stop along the road to wait for a train to catch up with us just so Emma Grace could wave and motion for the engineer to blow his horn. Once in awhile we would put pennies on the tracks and I have one sitting on my kitchen window sill that has been there for months (more like a year or so) reminding me of the time she and Eli put them on the tracks at Westville. Ask Stanton’s brother, Hayden, she even asked him to put money on the trolley tracks in Memphis and of course, he did. I really was skeptical if the trolley was heavy enough or going fast enough to smash them … both Hayden and Emma Grace proved me wrong. It did and she talked him out of every coin except for a couple which I held firm him keeping.

Eli is doing ok … bless his heart, he is excited to have Momma and Daddy home but he’s so brokenhearted at the same time. He is normally a pretty “bizzy” kid anyway and now it seems to be more nervous energy … what do we do next? I can’t help but think the same.

I told someone yesterday that it all seems surreal … I think God is buffering us with some numbness which is probably a really good thing right now. The evidence of her leaving is all around and yet I’m listening for her voice, waiting for her to come around the corner to crawl in my lap or run through aggravating Eli. We’re all learning to live a new way.

“Come to Me all who are weary and I will give you rest.” Matt 11:28

Our sweet Angel Baby is resting as we speak … when she’s not dancing, running, singing and playing. And to think … she’s resting in His arms, literally.

Thank you all so much and we’ll keep saying it over and over and over again. You will NEVER know what your love means to us. Please continue to pray for our families as well as our St Jude families. Special prayer requests: Christal as she continues treatment. http://christalinfo.servemp3.com. Bella has to stay at St Jude for more scans. www.caringbridge.org/fl/bella. Christopher as he enjoys his quality of life even while on Hospice. www.caringbridge.org/tx/christopher We love you all!

Let’s Keep Looking Up Together!

Only By His Grace – Trish, Barney & Eli

Wednesday, June 15, 2005 0:04 AM CDT

I can imagine Mr. Jeff will soon be gently nudging me to “Git R Done” – so bear with me as I dive in. And literally, it feels as if we have dove down into crushing depths we never wanted to go and yes, we are still trying to consciously breath in, breath out. Barney and I can truly say that God is carrying us thru each day, hour, minute, second and all the while reminding us to breathe. He is so awesome and we cannot fathom taking one step without Him.

It is so hard to believe Emma Grace danced through Heaven’s gates only a week ago?!?!? It actually feels like ages ago and I’m thinking that is because we are still so numb. In talking with Nancy Mills this afternoon, we were remembering when Emma Grace was placed on the vent and how in retrospect that I feel God was preparing Barney and I for her deliverance June 6th. For better than 9 weeks she lay in her precious “sleep” yet I do feel she was very aware of us and her surroundings but very sedate. We counted the times that she had setbacks or close calls … there were 6 and on God’s number of perfection, #7, He took His little angel. Yes, Emma Grace belonged to Him from the start of her precious life – God is gracious to bless Barney and me to be her parents. He had Emma Grace on a mission, she came and she did it … and it only took her four years. Whew!

Needless to say, we are still trying to absorb so much … it’s just going to take some time. Not that we think the enormous vacancy left in our hearts by Emma Grace will ever change but I pray God will heal the wounds. We have to learn to live a new way now … that is the reality. It is heartbreaking but God is faithful in His word this world is only temporary – but Life thru Him is never-ending.

Eli is going to Nolan Richardson’s Camp for Kids arranged by Jake McBride and Alan Woody of KIX 104 this Sunday. Those guys are incredible and have been talking to Mr. Richardson about Eli and his struggles, sacrifices and growing so quickly over the past 2 ½ yrs … this actually was all arranged prior to Emma Grace’s passing. Talk about God’s perfect timing?? They’ll have several activities during the day – fishing, basketball, football, go carts, you name it – and a different motivational speaker each evening. It will be great for Eli and he is SO excited about this camp. We are so grateful to Jake, Alan and Mr. Richardson for making this all possible for our little man so he can go and ENJOY! Thanks Guyz!!

Barney and I are also going to ‘get away’ next week while Eli is gone for some much needed quiet time. Some dear friends have generously offered us their condo in Branson and we are so thankful to them and looking forward to anticipated rest. Don’t be offended if we don’t answer our cells or update the computer. I chance to say we won't even take in a show or anything ... just rest and try to relax!

Emma Grace’s Life Celebration service was “Princess Perfect – It's All About Her”. Barney and I have to say we can’t take credit for much at all as we had SO many precious volunteers. If I try to list everyone, I will surely get in trouble ... so I’m not going there. Let me just say … Loyd Wayne – Thank you for handling so much of the details before we ever landed home-home. It made things so much easier. The video shows were incredible and all the hard work was absolutely worth every minute. Nancy, Dr. Ray, Laura, Dr. Craig (yes, he is better known as Rev Craig) and Bro Grant – you all amaze us! We know how very difficult this had to be and yet, you did it without a minute’s hesitation to honor our baby girl’s short but sweet life. Most of all, to glorify God for His goodness no matter what life has in store. Christopher Wayne & Shelly - you all are so precious! To know you gave up two, not one but TWO engagements just so you could be here for us. The "Emma Grace" revision in verse two of "I'll Walk You Through This" was priceless. Thank you! Cousin Nancy – God has certainly given you many gifts, one being Him blessing you in music and song. Emma Grace’s song was PERFECT! Just the way we remember her and if we think she was perfect here, you oughta see her now!!

Tina and Jeff – oh my, oh my … once again exactly where you needed to be when we needed you most. Thanks for spending your time in Arkansas at the “Barney’s Bed & Breakfast”.

Chris, Drew, Christal, Kylie and Mrs. Lois – Thanks for loading the wagon and heading our way. Isn’t it amazing how God has timed our paths?? We sure enjoyed you bunking with us at the “B, B & B” on Saturday night.

See … I’m going to get in trouble and leave someone out … considering my mind’s condition … I better stop. (but not before this) Thank you ALL for being part of Emma Grace’s Life Celebration but most of all, for being such special friends not only to us but her!! She loves each and every one of you!!

Barney, Eli and I cannot thank everyone enough for your encouraging cards, calls, gifts, guestbook messages, emails, visits, food, prayers and most of all, your incredible, unconditional love. You all are treasures to our lives that God has given.

I’m going to close with a couple of guestbook entries from two precious friends. Once again, we are reminded … God is good, so very good.

“’Life is not measured by the breaths we take, but by the moments that take our breath!’ You have had many God given moments with Emma Grace ... moments to treasure for eternity.” – Rhonda Garner, St Jude Mom to Caitlyn – CURED of leukemia!! AMEN!!

“HEAVEN

Heaven is full of wonderful things
Best friends and angel wings
Where you sleep on clouds of fluff
In Heaven you will always be tough.

When trumpets start ringing
The angels start singing.

Where you walk down streets of gold
Your family has memories that they hold.

There will never be a tear drop that falls
As You walk down the golden halls

Stanton and Emma Grace will always be friends,
Even when this world we know ends.

Written by Taylor Loftin, Age 11”

(I think Taylor has a future job with DaySpring, songwriting, poems, bookwriting or something!!! What a precious little girl!)

Thank you for continuing to remember our families, as well as our St Jude families, in your prayers. We love you all more than you can ever know. As Emma Grace would say, as she would pat her heart, “I wove you right here.” She had it all figured out, bless her sweet heart.

Missing her … oh my, missing her ...

Only By His Grace - Trish, Barney & Eli

Sunday, June 12, 2005 10:34 PM CDT

Can you only imagine how beautiful heaven must be for God to send such a precious little angel to grace us for this short while?

We are overwhelmed, whipped, and incredibly blessed for many things. Obviously, conveying anything that is in our hearts for you right now is not possible except that we love you and thank God for you always. Thank you for sharing in our journey!

Missing our Emma Grace beyond words ...

Only By His Grace - Barney, Trish and Eli

EMMA GRACE's TRIBUTE NARRATIVE (new term for obituary)

“Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these”. (Matthew 19:14)

We will celebrate the life of Emma Grace Hampton on June 11, 2005, at 10:00 a.m. at the Lincoln High School auditorium, Lincoln, Arkansas. The family will receive friends at Luginbuel Funeral Home in Prairie Grove, Arkansas, on Friday, June10, from 6:00 to 8:00 p.m. Emma Grace began her new life in Heaven on June 6, at the age of four. She won her battle with neuroblastoma but suffered complications from a stem cell transplant. Emma Grace fought this disease for over half of her short life. She will be remembered by those who knew her by her big blue eyes, never ending smile, and outgoing personality.

Emma Grace will be greatly missed by her loving and devoted parents, Barney and Trish Hampton of Lincoln, Arkansas. She is also survived by her brother Eli Stokes of the home, her sister Shelly Eatmon and brother Dustin Hampton, both of Van Buren, grandparents Lloyd and Betty Thurman of Prairie Grove and Pat Young of Oden, and the late Willard Hampton. She also leaves many loving aunts, uncles, cousins, and a host of friends near and far.

Emma Grace also leaves behind many special St. Jude friends still fighting the battle, including Sarah Claire, Christal, and Jake along with many others that she met along the way. Emma Grace was met at Heaven’s gate by her St. Jude siblings and we know that they are dancing on the streets of gold forevermore.

The family would like to thank the many doctors, nurses and staff at St. Jude and the Ronald McDonald House staff for making us part of their family. We could not have asked for more than you gave us, especially your care, friendship, love and most importantly complete devotion to our precious daughter.

In lieu of flowers, the family asks that memorial contributions be made to St. Jude Children’s Research Hospital, or to the Ronald McDonald House of Memphis.

Tuesday, June 7, 2005 12:41 AM CDT

Here are the directions to the funeral home, the school and our house coming from Fayetteville.

Go west on hwy 62 from Fayetteville until you get to a stop sign. (about 12 miles)
Turn right and then turn right at the first street. (Neal St.) Funeral home is on the right.

To get to the school where the service will be held you follow the directions from Fayetteville and once you turn right at the stop sign and continue west on hwy 62 until you get into Lincoln, Ar you will turn right onto Main Street and go around the square and proceed north on Main. At the stop sign the school is ahead on the right. The school has asked that everyone enter thru the door on the south side of the building. If you are family and that includes St Jude family you will turn left into the library as soon as you enter the school.

The get to our house continue west on hwy 62 until you get to county rd 17 (about 8 miles from Lincoln). It only turns left, turn left proceed to the first county rd on the right ( about a mile) turn right and we are the first house on the left.

There will be a time of fellowship at the First Christian church in Prairie Grove following the service. All of our family and friends are invited.

Thursday, June 9, 2005 8:26 AM CDT
The promise keepers org. are in northweast arkansas this weekend so therefore hotel rooms are in short supply. Feel free to call us as we have several friends and some of our family have offered there extra rooms to those that need them. Thank you for all of your love and prayers for our family and all of the loving thoughts and rememberances of our blue eyed baby girl. GOD IS GOOD...ALL THE TIME
EMMA GRACE'S Daddy

This is Tina again for the Hampton's. First of all thank you so much for all of the prayers and support. Having walked in their shoes, I know how much it means to read all of the guestbook entries. Trish has asked me to post the arrangements.

Visitation will be from 6-8 on Friday, June 10, 2005 at Luginbuel Funeral Home in Prairie Grove, Ark.

The Celebration Service will be 10:00 Saturday, June 11, 2005 at Coleman Auditorium at Lincoln School. Trish just called and wanted me to let you all know that there is going to be a color theme for the service. If you happen to have something pink or purple please wear it for Emma Grace this special day.

In lieu of flowers the family asks that donations be made to St. Jude www.stjude.org or the Ronald McDonald House of Memphis www.rmhmemphis.org in Emma Grace's honor.

Once again, thank you so much for your continued support. From experience they will need you now more than ever.

Only by His Grace
Tina
www.caringbridge.org/la/stanton

Monday, June 6, 2005 4:42 PM CDT

Hi this is Tina. This is an update and a favor that I hoped to never have to type. Emma Grace earned her angel wings about 40 minutes ago. I don't know the details except that she coded and they could not revive her. I have not talked to Trish just yet, I know they were surrounded by family and friends. We could never thank you enough for your support and prayers. I will update later with arrangements.

Emma Grace-You are one of the bravest little girls that I have ever met. I am a better person because I had you in my life if even for a short time. Give Stanton lots of kisses for me. I love you!

Tina
www.caringbridge.org/la/stanton

Monday, June 6, 2005 0:57 AM CDT

Ok, ok, things are slowly settling with our baby girl.

Emma Grace’s blood pressure issues are finally settling down. The dopamine is now off and the epinephrine is at minimal settings. The issue with the fragile red blood cells that were “bursting” due to the preventative antibiotic used yesterday is improving. Is it surprising that the term “rare adverse side affects” would be the “normal” reaction for Emma Grace? The Team is on top of the reaction and treating her as her body tells them to … moment by moment.

I have to apologize for the recent updates from me being “generic”. I am so thankful that Barney jumps in and he does a great job. Honestly, he is really “in tune” with all the micro managed treatment and changes with Emma Grace. I have found I “do better” if I don’t know all the fine details. I am so thankful that Barney is able to be here with us and he needs to be. Thank God He worked it out for us.

In my “semi-sane” world, it would be easy to act like everything is just rosy and try to make you believe that as well. Sometimes it just gets overwhelming and we don’t even know what to say. We have been emotionally, physically and mentally whipped … not saying that to complain by any means. It is just hard. Emma Grace has been on the vent 9 weeks tonight and we are approaching week 10 in ICU. It goes without saying that days are often a challenge. Barney and I have no idea what to do next but wait and pray. It can just get all too consuming. We may not know but God does and that’s Who we have to leave it with.

Whether it is life here in the ICU, facing problems with everyday trials at home or work, whatever the trial … they’re all trials and they’re difficult … period. God promises that “joy comes in the morning” and we all have to hang on, hold onto Him. (Message intended for me.)

Emma Grace and I had a really good time Saturday (prior to her "episode"). Daddy wasn't feeling too hot and was resting in the parent room so I decided that Emma Grace and I would play some great music, sing while I did a manicure and pedicure. Emma Grace now has a lovely shade of pink sparkly nail polish and I know she would definitely approve. We had a good visit ... of course, it was pretty much a one sided conversation and I know she probably got tired of my singing. Hopefully, she enjoyed it as much as I did.

Nanna and my precious Aunt Faye are coming Monday - Wednesday for a visit. It will be good to visit with them and we're so looking forward to seeing them. Granny Pat is coming Wednesday to stay for a while so it will be a full week. We're looking forward to it!!

Thank you so much for the wonderful visitors we had over the weekend! With it being Survivor Day on Saturday we were blessed to get to visit with Kristy Leick and family who we lived with when we first started at St Jude in Oct 2002. We were so surprised to see Caitlyn Garner and family. You all cannot know what a blessing it was to get to visit with you! You made our day! We love you!

A special thanks to the Weddington, Summers and Prairie Oaks Missionary Baptist Churches for the overwhelming gift of love. In lieu of the 5th Sunday Singing, the Weddington Church performed their marvelous White Mouse Productions Puppet Show plus they honored Emma Grace and Eli in making them Honorary Puppeteers! We hear from our family the Puppet Show was wonderful and Emma Grace would have loved it. Also, they said the fellowship feast following was fabulous!! You all are incredible and we thank God always for sharing such an amazing church family with us!! We love you and our hearts are humbly overwhelmed at your loving kindness!!

We love you all and you can never know what a blessing you are to us. Your faithful prayers for Emma Grace and her friends are incredible. We love reading the wonderful notes of encouragement and one day we will read them to Emma Grace so she too can realize just how many prayer warriors / friends are beckoning God’s throne on her behalf.

Please add a very special little man to your prayer list, Mr. Jack Thomas Bauch. Mr. Jack was born on May 31st, son of our sweet Nurse Ashley and Dr. Stephen. Mr. Jack is in ICU at Methodist East having tests run due to complications. I talked to Dr. Stephen yesterday and he said the testing is not revealing anything so far which is good. This is a precious family that we have grown very attached to and feel as they are family as well. Thank you for your prayers for Mr. Jack as well as Ashley and Stephen during this time.

Please also pray that those Momma Cells GO GO GO! and give Emma Grace the kick she needs to heal, Heal, HEAL!!

Praying, praying, praying … God is able.

Only By His Grace – Momma Trish

Sunday, June 5, 2005 5:53 AM CDT

Another Good Day

Emma Grace had another good day yesterday, she is holding stable which is a good thing. Part of the TEAM was worried that the new momma cells might be filtered out by the hemo filtration machine, not to worry Emma Grace let us know in her own way that the cells made it just fine. She was given a drug as a preventitive against ebstien barr virus that can be trtansmitted with B cells from momma. Not bad to momma but could cause real problems with a compromised immune system therefore the need for the med. One side effect is lower blood pressure and that is just what Emma Grace decided to do. (look mom down we go again) Not as scary since we were expecting it to happen. She also had to experiance a rare side effect of the drug as well. It is a condition where her red blood cells burst very easily when they are ran thru the lab equipment. needless to say the lab was having to rerun all of the test because the numbers were to high. We made a phone call to the good Dr. Ray, he got on line looked at her lab results and proceeded to explain everything to us. When we went back in to see Emma Grace the doctor was calling Dr. Ray to discuss his findings as well. They were both on the same page. The result is to just watch and give packed red cells when they are needed. A LW when we needed one, at least now we know that the cells are setting up shop. If they were not Emma Grace's body would not have responded as it has. Thank you JESUS for watching over our baby girl.

I hope everyone enjoys thier SONday.
Emma Grace's Daddy

Saturday, June 4, 2005 9:25 AM CDT

SORRY IT’S LATE

ALL IS WELL, Emma Grace had a good day yesterday and tolerated receiving momma’s stem cells. She has received 120 ml of momma cells in the last two days, now we wait some more. It is really anti climatic when the cells are given; the TEAM walked into the room with a 60 ml syringe thats full of cells and proceeded to slowly push them thru one of her lines for the next fifteen minutes. The TEAM closely watched all vital signs as the procedure took place. Once the syringe was empty and unhooked the team gathered there many sheets of forms and said now we watch and wait. So now the hard part, although we have gotten good at watching and waiting over the last nine weeks.

When we went to bed last night Emma Grace’s O2 was set at 70 percent so you can understand my smile when I walked in this morning to see her O2 at 60 percent. This is where she was when the Harvey Team had to be called. It is good to see her slowly making progress, several LW’s in the last couple of days. Thank you JESUS for constantly carrying our baby girl and touching her little body. It is always good to see what the power of prayer can do. Sometimes it does not always happen as fast or when we think it should but we can always rest assured that it all happens in GOD’S time, and that HIS time is all that matters. Thank you JESUS for loving us and giving us the peace that YOU have given to us.

Today marks a special time for several families here at St Jude, it is survivor weekend. There are several of our friends here taking part in the weekends events. It is always fun to see them and visit, if only for a few minutes.

We talked to Jake’s momma yesterday and she said that Jake was doing better. His doctors have identified two bacteria growing in his little body so now they know which meds to use. You can check on them and leave them some words of encouragement at caringbridge.org/la/jakeowen.

If you want to see the awesome power of GOD, go check out Tate Lewis’s web site, Caringbridge.org/tx/tate. Little Tate has rebounded from his last hospital stay and is doing well. Also remember that his daddy is celebrating 5 years cancer free from a brain tumor. A very special family that we meet on our way to San Antonio last fall.

We would like to thank everyone for everything that you have done for our family; it is people like you that help make this journey a little more bearable.

God is Good
Emma Grace’s Daddy

Friday, June 3, 2005 0:01 AM CDT

Safe in the Shepherd’s Arms …

God’s mercy is beyond amazing. He continues to hold our baby girl close to His heart.
Emma Grace is holding stable, actually has slightly improved on her blood gases. There is no doubt that God is carrying us all, especially Emma Grace.

She received the first of the “Momma Cells” Thursday evening and will receive another dose Friday evening. I finished the final apheresis Thursday and the last of the G-shots. My ANC reached a whompin’ 31,400. Yeowch! But it is behind us now and I will do it again if that’s what our baby girl needs. We pray these cells will give her immune system a much needed boost and help her body heal.

We thank you for your continuous prayers for Emma Grace. With the ups and downs of her ICU visit there is no other answer but God’s healing touch. She’s a strong little fighter and your continued prayers mean more to us than you can ever know.

We love you and thank God for you always!

Only By His Grace – Momma Trish

Wednesday, June 1, 2005 9:35 PM CDT

Well guys it is me Tina again. I bet you can guess that since I am updating things aren't going real well in the Hampton camp. After the events of today Trish and Barney are EXHAUSTED (like they weren't already) so they asked me to do an update for some specific prayers.

Emma Grace was rolling along pretty smoothly this morning, Trish went down to start the process of removing her stem cells and since I am unsure of the events that led up to the downfall I won't mention them. What I will say is that Emma Grace's right lung perforated again and the "Harvey" team had to be called. "Harvey team" at St. Jude is like "Code Blue" at other hospitals, not the words you want to hear being paged to your daughters room. Her heart rate and blood pressure dropping were some of the complications going on. They sent someone down to get Trish off of the machine. I think they had the cells, she just didn't get all of her blood back.

When I talked to Trish she said that Emma Grace is once again "stable". I believe her vent pressures are up and I am not sure about medicine she is receiving for the other problems. It is like 2 steps forward and 6 steps back.

Needless to say this family needs your prayers. They need strength for Emma Grace to continue to fight such a brave fight, wisdom for the team making the treatment decisions, and much needed rest for mom and dad.

Emma Grace will get the first batch of "Trish cells" tomorrow and Trish will harvest more cells tomorrow for Emma Grace to get on Friday.

I know this has been a little lengthy but you all are used to Trish so it hasn't been too bad. I can't put into words what this family and this little girl mean to me. It is breaking my heart that I can't be right there with them holding Trish's hand every step of the way. I vividly remember visiting with her the last time she had her stem cells collected. She was a little out of it so it was quite amusing. My heart just aches for her because I can't fix the pain. I couldn't love her, Barney or Emma Grace more if they were my own blood.

Standing in the Gap
Tina
www.caringbridge.org/la/stanton

Monday, May 30, 2005 10:57 PM CDT

UPDATE MAY 31, 2005: Calling all prayer warriors. This is Tina and no the urgent prayer is not for Emma Grace this time but for another very special St. Jude friend. Jake is in Shreveport in the hospital waiting to be transferred to PICU. It appears he may be going into septic shock. Please visit his website at www.caringbridge.org/la/jakeowen. Thank You for your continued prayers for all of our babies.

Another stable day ...

Emma Grace seems to be holding steady - no forward or backward - just steady. Her O2 sats and blood gases are still holding well. We are thankful for another uneventful day. God is good, yes, God is so good.

We understand from Camp Nancy that Eli is having a wonderful time with "the boyz". Eli said they have been having a great time. It's so great for him to just kick back and be a kid for a change.

I'm on day #3 of my G-shots ... ugh! Some kind of sore but again, it's so hard for me to complain considering these babies go thru so much more. It's obvious they are much braver than I am.

We love you all and thank you for your continued prayers. You all are the greatest! Keep Looking Up with Us!

Only By His Grace - Trish

Monday, May 30, 2005 0:46 AM CDT

For I the LORD thy GOD will hold thy right hand, saying unto thee, Fear not; I will help thee. Is 41:13

This is the promise that the LORD gave us and this is the promise we will live by. Emma Grace has had a very uneventful day, her O2 saturation level has remained in the mid ninety ranges all day. Her blood gases are still looking good and everyone is happy. We are constantly reminded to be very cautious because as we have learned in the past things can change in a moment. We have always said that we have had to live day by day since this battle began; now we have learned to literally live moment by moment. The TEAM does what needs to be done when it needs to be done and we ask no questions until things settle back down. We constantly pray for GOD to lead the TEAM in everything that is done for our blue eyed baby girl, it is so much easier to accept what must be done knowing that GOD has already put his blessing on it.

Nana and Poppa loaded up and left around noon today headed home. Thank you for everything Nana and Poppa it is always nice to see you. No Nana not when you leave either, Nana always says that I love to see her leave and I must confess I have been known to give here a hard time about itƒº We love you and I know we can never thank you enough for what all you do.

Shortly after Nana left a couple from home showed up to surprise us. Bob and Judy Watson came to Memphis for a very nice visit. Trish and Judy worked together almost four years. It was a real treat getting to spend time with them all evening. Thanks guys for thanking of our family and spending time with us.

Please say extra prayers for momma this week as she is under going the G shot to boost her immune system so that there will be lots of stem cells for the TEAM to collect on Wednesday and Thursday. Imagine a bad fever causing all of your bones and joints to ache; this is how momma describes how she feels to people. Trish¡¦s ANC was at five thousand Thursday before she started G shots on Saturday, now think how it must feel to try and pack an ANC of around thirty thousand into the same space. It gets crowded in a hurry and then it spills over into the blood stream where the machine can separate it out and give Trish her blood back minus the stem cells. She is already on pain meds for the discomfort and I know from experience that it is only going to get worse until the shots stop on Thursday.

I checked Tate Lewis¡¦s web site today and discovered that our little buddy may be headed home tomorrow. A very blessed little man and his family can be found at www.caringbridge,org/tx/tate Tate you are a special little man that GOD is working miracles with.

Always letting GOD hold my hand and show me the way.

GOD IS GOOD
Emma Grace¡¦s Daddy

Sunday, May 29, 2005 0:10 AM CDT

Howdy to All!

Emma Grace is having another good day ... her 02 sats are better than they have been in awhile. We pray the continue to improve and hopefully, the Team will be closer to getting her off the oscillating vent and back on the other vent.

Nanna, Poppa and Bubba Eli arrived yesterday evening and what sights for sore eyes. (literally!) Nurse Joshua, Emma Grace's sweetheart, came by the hospital to take Eli to "Camp Nancy". Joshua, Corey and the 4th floor crew was going out to the golf tournie so they carried Eli with them. Nancy said Eli hit the ground running - he and Bobby have been going strong all day. They were having such a good time swimming with two other guys, in fact they were having such a fun time the Golf Tournie "nazis" had to come ask Nancy to quieten the boys down as the golfers kept looking their way. Ok ... so maybe Eli was on TV afterall but hopefully, NOT for disturbing the pro golfers!!

Cousin Ernie came to visit us today as well. It was good to spend time with him. He loves his Emma Grace and she loves him equally. She may be sleeping but she knows.

Nanna, Poppa, Barney and I actually went out to eat ALL at the SAME TIME!! Daddy and Barney rode around the truck dealerships kicking tires. (Once a trucker always a trucker). It was a beautiful day for them to get out and about. The guys called us to meet them at my new favorite restaurant "Side Porch Steak House". Daddy had been wanting a good steak and once again, we ate well!!

I started the infamous G-shots again today. I assume I'm getting a WHOMPIN dose as it took two nurses to give it to me ... one syringe in each arm. Once again, I have a whole new respect for these sweet babies who take this injection on a regular basis.

Thank you for your continued prayers for Emma Grace and all her friends. Also, for your prayers for Barney and I. You cannot know how uplifting it is to know so many are faithfully praying not only for our family but so many of our friends. You all are the best. Enjoy the long weekend and know that we love you more than words can say! May His Sonshine Surround You!!

Only By His Grace - Momma Trish

Saturday, May 28, 2005 0:21 AM CDT

A day without twists …

Emma Grace had a much better day … the chest tube that was placed in the wee hours of Friday morning has proved to be beneficial. Her blood gases and acidocity improved as well as her O2 sats. She had quite a bit of “air pockets” under the skin especially in the collar bone area. This evening that has improved considerably. God keeps stroking her problem areas for healing.

Dr. Ray and Dr. Rupert have placed all necessary procedures in place for the apheresis / stem cell collection to give Emma Grace a boost to her immune system. God has all the details in place and when it came time to submit for permission with FDA for this “boost”, Dr. Ray was made aware the procedure is already granted as he had included it in the original submission back in November. So, the FDA issue is not an issue … it’s handled. They will start giving me the G-shot on Saturday thru Thursday and harvest me on Wednesday and Thursday of next week. Dr. Ray explained that this will be so much easier on Emma Grace with the boost as the “Momma Cells” will be infused into our baby girl, the cells will see other “Momma Cells aka Emma Grace cells” that have set up housekeeping and go to work with them to help her immune system out. Please pray this will give her the much needed “charge” to keep climbing the hill to complete recovery. Also, please say an extra prayer for me as I receive the injections again. I’m not concerned at all about the injection – it’s the effect that gets quite uncomfortable. How in the world can I even think of complaining with all our precious baby has been through?? (so be sure to remind me of this again next week when the injections are almost complete … ha!)

Nanna, Poppa and Bubba Eli made it in this evening and we are so tickled to see them. Eli is quite anxious to go spend time with Bobby Mills for the week. It will be great for both of them to finally get to spend some time together out of this hospital.

Daddy and I are emotionally and physically sapped. The pillows are calling our names so this entry will be short and sweet. We are ever grateful for your faithful prayers. You all are absolutely the best. The thoughtful notes on the guestbook are so encouraging. It is so uplifting to see the overwhelming love and support. May God’s Sonshine surround you. Keep Looking Up with Us!!

Only By His Grace – Trish

Friday, May 27, 2005 4:03 AM CDT

And the ride continues …

Let us just clarify and reiterate once again … though the ride seems unending right now with wilding twists, we know beyond a shadow of any doubt, Who the Brakeman and Operator of this ride is. God is … period.

Emma Grace is not having the best day, night or wee hour morning. Her blood gases, i.e. acid level, oxygen and carbon dioxide have been getting worse and last draw at 2 am determined that something was going on with our girl. The on call doctors were brought in and the chest xray revealed that her right lung, yes the right lung not left, has developed a hole allowing air to leak into her chest cavity. The left also has air around it but they feel the right lung in the culprit. The Team determined a chest tube needed to be placed to drain the air, fluid, etc. So, upon typing this at 3:50am, the chest tube is in and her O2 sats are already better. We are praying this is just the added fix she has been needing to get her back over the "hump" she has been getting struggling with.

We had a surprise visitor today and what a welcome sight to behold … our dear friend Gerhard Barone traveling to Philly. What a blessing God has given us as well as the Haynes’ with this precious family. Please pray for his travels as he continues. Thanks Gerhard … you can never know how perfect your timing was … but God did and that’s why He sent you!!

Our Mr. Eli will be arriving this evening and we are SO looking forward to seeing him. He will be here a week and getting to spend alot of time with Ali's mom and brother, Bobby at "Camp Nancy". He is looking forward to getting to see the last two days of the FedEx / St Jude Golf Classic.

Thank you for your continued prayers for our precious Emma Grace as well as her many friends who fight, fight, fight. Christal and family are headed home to Florida for a weekend retreat. Please pray for their traveling mercies as well as the chemo to be doing its job. We love you all more than you know!!

Sleep has not been an option for the night so a nap or two may be on the agenda for later when things settle.

Only By His Grace – Trish

“And Jesus answering them saying, Have faith in God.” Mark 11:22

Wednesday, May 25, 2005 11:41 PM CDT

An Uneventful Day

I guess GOD and Emma Grace decided momma and daddy did not need another evening like yesterday. Today has been a slow day all the way around. The TEAM has decided to change some medicines around and try to jump start Emma Grace’s immune system. The stem cell boost from momma is in the works unfortunately it will take a few days to get everything in place. The procedure has to be approved from the hospital revue board and then submitted to the FDA for approval. Once the approval is received then the process requires momma to undergo shots for five days before being harvested. Doctor Barfield said that there would be no real risk to Emma Grace since momma’s cells are already engrafted. He said it would be like old friends seeing each other again. The paper work is in progress so now we wait.

Emma Grace has had the O2 turned down some only to be turned up a little bit. Yesterday was a day for reverse, after it all was said and done we wound up where we were last week. She has recovered a little bit today and we are praying that she can continue to recover. In talking to the doctors today, yesterday was compared to one of the doctors running a marathon only to have their feet kicked out from under them a mile from the finish line and then getting told to get back up and run, hard to do when your already tired, so we just pray that today Emma Grace was resting getting ready to run again.

Thank you all for the prayers for our family and all of our St. Jude family as well. It was nice to read on the guest book that our little buddy Tate Lewis is doing better.

ALL THE TIME GOD IS GOOD
Emma Grace’s Daddy

Wednesday, May 25, 2005 12:21 PM CDT

Feeling the winds of our rollercoaster???

Let us preface this entry with saying, everything’s ok now. We all had quite a scare last night as the oscillating vent malfunctioned and it goes without mentioning that things got wild quick! Her nurse, Rafonda, was in her room when it all went haywire – Daddy and I had just eaten supper in parent room; he had went downstairs to computers and I was on the phone, naturally, still in the parent room. When the Team located us things had started to slowly improve. In a nutshell, they bagged her as her O2 sats had dropped to 80, heart rate to 59, and blood pressure around 80/40’s. The Team immediately started dopamine and epinephrine, to increase blood pressure and heart rate. The respiratory team changed out the lines on the vent that was the culprit for the decline. They felt the vent had been moved while giving her a bath and bed change and “kinked” one of the sensor lines. So, as things stand now, she is slowly regaining ground that was lost in the matter of minutes.

Yesterday had been one of those great days that we couldn’t wait to journal about … the Team was able to turn the oxygen down on the vent, turn down the mean pressure another notch, her blood gases were improving and her O2 sats had been holding at 96-97. She had gained about 6 steps of progress only to scoot backwards about 10. Overall, she is about 4 steps away from being even. The dopamine and epi were turned off early this morning and her blood pressure is holding good. Of course, I’m only guesstimating “steps” but Emma Grace seems to be proving that she is trying to overcome. What a little fighter she is!!

First and foremost, THANK YOU GOD for keeping Emma Grace so very close to Your heart!! He is such an amazing God; we can never get our heads or hearts completely around His greatness. Thru the good and the bad, He is awesome. He just is … His love is unfailing and thankfully, so unconditional.

Secondly, neither Barney nor I could collect thoughts enough for even a short note last night. Earlier, we had SO much to tell and then when the night fell … so did we. We looked at each other in disbelief. It’s so very hard to write when you’re numb, dumbfounded or just plain emotionally trashed. Everything happened so quickly we didn’t even have time to make a call to Tina for “immediate prayers needed” note on the website. We stayed focus on the Emma Grace, the monitors, trying to absorb Dr. Lama and the incredible Team who NEVER cease to amaze us. God has certainly gifted these precious folks and we are ever grateful for His mercy and grace in doing so. So, we apologize for just now getting this posted …

Thirdly, (is there such a thing??) The Team is rounding as we speak and we are awaiting the next course of action. Their main focus is her lungs. The chest x-rays have not really improved in the past two weeks. Still a lot of inflammation, “junkiness” and they are discussing “pulse” doses of prednisone. Another issue is her liver – LET ME SAY IT IS WORKING. I hesitate even mentioning it as we don’t want anyone to be misled as to what is going on. Her liver is flowing nicely, which means it is functioning. Her bilirubin is on the rise so she is quite jaundice. Therefore, the Team feels that she has GVH, graft versus host, in her liver as well. It makes perfect sense as she keeps a “slow simmer” of GVH in her gut and skin. They may do a biopsy to confirm their suspicion. It will only determine which medication needs to be added to her regimen. Remember, a “slow simmer” of GVH is good.

Fourthly, (now, this is a grammatical stretch) as you would suspect, all of her organs, immune system included have taken “hits” with the pneumonia, infections, etc. including medications that can also have an affect on different systems. Everything that is being done at present – ventilation, hema filtration, antibiotics, IV meds / sedations, EVERYTHING that is done is for her protection, support and healing. Dr. Rupert, Chief of Transplant, came to visit with Barney and me yesterday afternoon about the possibility of “boosting” her immune system with more “Momma Cells”. They virtually would remove all the t-cells, which causes GVH (we’ve got an adequate and desired dose of GVH on board now). Basically, it would be going thru the g-shots again for only 5 days this time, running my stem cells thru the mackdaddy, CliniMax machine to remove the t-cells and give Emma Grace an immune system boost. Dr. Rupert, who we obviously have the greatest respect for, commented regarding going thru the g-shot and aphaeresis “if you would be open to doing this”. My split-second response initially was ‘WELL DUH!! WHY WOULDN”T I?!?!?!’ But I selectively chose, “Of course, I’m fine with doing it again. Take my right arm, my left, whatever you need to get our baby girl better.” Whatever it takes … that’s where Daddy and I are as long as she is not being harmed and she is not. Everything done is supportive to her healing. God’s already got the healing handled, just as He does each fine detail.

In closing, once again, we cannot thank you enough for all you do. Most of all, your love and prayers for Emma Grace as well as for Daddy and me. We appreciate your concern and patience in awaiting news on our baby girl. We’ve always said in the past, ‘no news is good news’. Guess we blew that one, eh? So let us revise, “no news is no news – just pray.” We love you all more than you can know. Keep Looking Up with Us!!

Only By His Grace – Trish

Tuesday, May 24, 2005 2:13 AM CDT

ANOTHER GOOD DAY

Today has been another good day for Emma Grace so that makes it another good day for momma and daddy as well. The doctors were able to turn the mean airway pressure down another number today. The doctors have told us that they are going to only go one number a day. Emma Grace started out on 30 and is now down to 27; needless to say it is going to take sometime. We are not sure how low this machine has to go before they switch Emma Grace back to the other ventilator. The hemo filtration is getting rid of the excess fluids that Emma Grace has stock piled. Her little body is not near as puffy as it has been. The hope is to keep the extra fluid out of her little body so her body can mend without something in the way. Every time Emma Grace would get 200 ml positive, she would start having trouble with her breathing and her kidneys would slow down trying to protect themselves which would only add to the fluid overload even more. The knowledge that it has taken to design and build all of these machines is truly a blessing from GOD. It never ceases to amaze me, just when everything is going backwards the doctors order another machine to help our baby girl’s little body heal some more.

We will never know how many people are holding our baby girl up in prayer and all we can do is to say thank you. We know without the power of prayer everything would not be as smooth as it has been. It has been a pretty rough ride the way it feels, we cannot even begin to imagine what it would be like without GOD and your faithful prayers of everybody working together. THANK YOU!!

GOD IS GOOD
Emma Grace’s Daddy

PLEASE REMEMBER OUR LITTLE BUDDY TATE LEWIS THAT WE MET ON OUR SEAWORLD TRIP. TATE IS STILL RECOVERING FROM A SETBACK OF HIS HEART SURGERY. FEEL FREE TO SEND THIS PRECIOUS FAMILY A NOTE OF ENCOURAGEMENT. WE KNOW THEY ARE GRATEFUL FOR YOUR POWERFUL PRAYERS. THANK YOU! www.caringbridge.org/tx/tate

Monday, May 23, 2005 2:15 AM CDT

Monday mornin’s soon on the horizon …

Emma Grace, that little dumplin’, she is just cruisin’ along - a sloooow cruise but nonetheless, cruizin'. The Team was able to turn the “mean pressure” (I’m not sure I understand this one but I think it is comparable to the peep pressure on the previous vent – I can guarantee you, Barney understands it FAR better than me) and she has tolerated it well. That would be just about the only changes that have been done today. Dr. Lama said she would also hesitate pushing Emma Grace too much as she proves not to like quick changes. So … we do have a LW for Sunday and we are thankful.

Barney’s brother, Marvin, came to visit us today and it is always good to see him. I could tell Barney was especially glad he came for “brother talk”. And the best part is, sometimes words don’t even have to be said. Thanks for making the trip, Marvin! We love ya!

Bubba Eli will be out of school this Friday and we are looking forward to seeing him. He should be staying about a week with us. He is growing so quickly … I know he is looking me at eye level now. Time certainly slips by before we know it.

Please keep a little man named Adam in your prayers. We met him and dad, Chris, at RMH while attending dinner and meditation with Lauren King Ministries a few months back. Adam was admitted into the ICU earlier this week with pneumonia, placed on a vent and in talking with Chris today, he seemed to be doing better. This evening Adam’s blood pressure dropped dangerously low and the Harvey Team had to be called. The Team is not certain what is causing the problems and I know this precious family certainly would appreciate your prayers.

Thank you for your continued prayers for Emma Grace and all her friends. We know that God is in full control and we are just following His lead. I attended Saturday evening services with Nancy, Bobby, Laura and Brooke and the message was on “Not Giving Up”. I do believe it was just what I needed to hear. Funny how God just times things so perfectly, eh?? Have a blessed week and know that we are ever grateful God has blessed us with you!! We love you!!

Only By His Grace – Momma Trish

Saturday, May 21, 2005 10:34 PM CDT

Just a quick note to say that Emma Grace is having another good day. No great changes but just holding pretty steady.

The phone system is being worked on again tonight so I thought I better get a quick note in before it goes down at 11 pm.

We love you all bunches and thank God daily for your continued prayers, love and support for Miss Emma Grace and her friends. Keep Looking Up!!

Only By His Grace - Trish

Saturday, May 21, 2005 3:14 AM CDT

Good Mornin' to All!

Emma Grace had a good night, good day and so far, working on another good night. Her 02 sats are holding well and she is just resting, resting, resting.

The great news for Friday is - nothing is growing on the cultures thus far!! Thank you Lord!! Dr. Ray said they had her covered for hopefully anything that could possible culture positive. Nodda, zilch, nothing ... and we're praying it stays that way!!

Dr Ray had been suggesting that Daddy and I need to take "breathers" away from Emma Grace's room and the monitors. She has 2 nurses caring for her 24/7 now so she is well guarded. So we took his advice today and went out of the hospital to eat with Bro Grant. We had wonderful food, a great visit and hardly knew how to act with Barney & I both sitting outside of the Jude at the same table!! It was really a nice break. Thanks Dr. Ray for your gentle persuasion and Bro Grant for the wonderful fellowship!!

Barney and I turned our closet / dayroom / bedroom / diner into a Movie 4 2 room this evening. We watched "O Brother, Where Art Thou" and it is a hoot!! Barney and I loved it and actually both stayed awake for the whole thing. (If you know Barney and you know me, that was a feat all it's own!!!)

We love you bunches and boo-koos! Thank you for your continued prayer for our precious Emma Grace and her many friends. God is good - all the time!!

Only By His Grace - Trish

Thursday, May 19, 2005 11:45 PM CDT

First of all, thank you Tina for giving everyone a “heads up to get prayers up”. We LOVE the Cruisin for a Cure picture with our precious Stanton. Thank you so much, Sis. Also, thank you all so much for your incredible compassion, love, support and kindness … most of all, your faithful prayers. Also, thank you so much Chris, Laura and Nancy for coming to our side for such comforting support. God is so good!

I know this will be hard for you all to grasp but I’m having a hard time trying to “talk” tonight. My brain seems numb, my heart is hurting and my body, oh boy, my body is in “snail gear”. I can assure you … no one will have to rock Barney or me to sleep tonight. Enough bellyaching about us … surely I cannot justifiably moan and groan if Emma Grace can fight with all her might. She is such a brave and tough little precious and we continue to learn from her determination daily.

What a whirlwind the past 36 hrs has been … God is holding our baby girl tight. Emma Grace has held stable today and even had her oxygen weaned ever so slightly this morning. The hema filtration, same principle as a dialysis machine, was at last up and running by 3:30 am. The Team was having many difficulties, initially with Emma Grace and her blood pressure dropping dangerously low, then with the hema filtration machines. Yes, I said plural. She is now on her 4th machine … long story but the filters kept clogging and so they kept working until everything was running smoothly. Hence, the wee hour completion of finally getting started with the whole process.

The hema filtration was determined to be the best option for Emma Grace to try to get more fluid off of her, give her kidneys a rest and most importantly, get fluid off her lungs. Our goal is to get her fluid under control and get her off the oscillating vent and back on the conventional. Her lab work has been showing slight improvements today. Thank you Lord!! The general consensus of her getting so sick last night seems to be that she may have an infection but they don’t know where. The Team seems to think she may have become septic again last evening as she changed so drastically and quickly. Not is culturing so far but it is a bit early. We’ll just pray that whatever is causing her so much havoc is being covered with the many antibiotics that have been put back “on board”.

We have a surprise guest this evening, our pastor from home, Bro Grant!! He is staying overnight and it’s so good to see him. I know it is so hard for him to get away with 4 kiddos at home so thank you Leanne for holding down the fort and thank you Grant for coming to be with us. Nancy and Janie brought supper in for all of us and it was oh so yummy!! The fellowship was even better. Poor Grant got a full dose of Barney, Laura, Nancy, Janie and I … it was some wonderful laughter therapy.

I got so wound up talking about Christal’s birthday on Monday, I failed to mention that Bro Glen & Judy Faulkner came to visit with us. Bro. Glen is the pastor at Nanna & Poppa’s church and it was such a blessing to see them. I felt badly because they had came about the same time as the birthday party but Glen said they did what they came for and that was to see us and pray for Emma Grace. God always knows what we need when we need it most.

In saying that let me say … with incredible humbled and grateful hearts – thank you Mo, Todd, Don, Staci, Jin and sweet friends from West Monroe. You all are absolutely amazing and you can never know how thankful we are to you.

Also, there were two huge care packages delivered from Minden. Dr. Lizzie and Karla … OH MY WORD!!! What blessings you are!!! Barney and I had the best time opening all the happies. You would have thought we were kids at Christmas. It looks like you had a great time putting everything together so carefully tagged and wrapped. God is so gracious to allow our paths to cross and what blessings you are to us.

I have to tell you Karla’s daughter, Taylor, put a note on the guestbook recently that says she will be having a birthday soon. Rather than accept gifts from her friends, she has asked that contributions be made to St Jude instead. Is that not precious?

I’m going to close with one of the many inspiring cards that were attached to each of our happies from Dr. Lizzie and Karla. One of my favorites seems to hit home …

“You are my refuge and my shield; I have put my hope in Your word. Psalm 119:114
Hope fills the afflicted soul with such inward joy and consolation, that it can laugh while tears are in the eye, sigh and sing all in one breath …” William Gurnall

We love you all tremendously and thank you for your loving compassion, especially your faithful prayers for our precious Emma Grace.

Only By His Grace - Trish

Wednesday, May 18, 2005 10:27 PM CDT

Hey all you prayer warriors this is Tina for my sister Trish. Early this evening Trish called and told me that they were going to start dialysis on Emma Grace tonight to try to get some fluid off of her. She called back later and her exact words were "our baby girl needs lots of prayers." Apparently when they started the dialysis her blood pressure dropped so drastically that they had to start a blood pressure medicine and stop the dialysis. I don't know what this means but they were waiting on the doctor to come by. Trish wanted me to update so we could beef up the prayers a little. This little girl has fought so hard please pray for her as well as Trish and Barney. As usual I feel pretty helpless so far away.

Standing in His Grace
Tina
www.caringbridge.org/la/stanton

Wednesday, May 18, 2005 2:40 AM CDT

Note: It's 3:07 am and I just checked my sister, Tina's website. WOW!! Is it odd, or is it God?? When you read on thru my entry and read Tina's, you'll know God is obviously sending a message to both of us. True sisters we are and we hadn't even discussed this prior to journaling tonight. We just shared our hearts. I often think He allows mine and Tina's to beat together. I thank God for His perfect timing and for my Tina!

Emma Grace is holding good today … her O2 sats have held right at 93 all day with an occasional jump to 94, 95 & even 96 a couple of times. The Team has decided to give her “ever so gentle” nudges with her ventilator in hopes of gaining more ground. I know it is hard to get a feel of what’s going on with her and with each day that we have LW’s it seems that she should be up and going soon. Not to sound negative but that just isn’t the case … she IS going to be up and going, I believe that with all my heart. The reality is it’s just going to take time. Now, in saying that let me say this … God can do anything. We have seen, are seeing and continue to see His mighty Hand in everything especially, concerning the healing of Emma Grace. Believe me, we are humbly grateful for His mercy. The waiting part is also part of His plan … and I’m learning to be a “waiter” – I didn’t say a good waiter but a waiter none the less. (more on that in a bit)

The latest ventilator, the oscillating vent, gives her 6 breaths a second. It’s quite different from the first vent but was necessary to protect her lungs. Last Tuesday the Team needed to completely control her breathing yet could not give her more pressure as she had reached the maximum without causing damage. So that is why she was placed on the current vent. Once they get the pressures weaned on this vent then she will be placed on the previous, conventional vent and again, the weaning process will start like it did before. So, again, I’m not trying to be a “negative Nelly” – I’m just trying to give you all a summary of where she is and the game plan.

I feel like we’re in a really bad Blue’s Clues episode … you know the part where “whatz His name” sings “Sit down in our Thinking Chair and think ... think ... thinnnnkkkk!”. There’s a whole lotta thinkin’ goin’ on. (And obviously watching a bunch of Nick Jr shows … but Emma Grace likes it!) Not that we’re really accomplishing much with our thinking but we certainly have plenty of time on our hands for reading, puzzling, studying, thinking … and most importantly, lots of praying and talking to God.

In mentioning the “Blue’s Clues” song, I have reworded it fit our days with Emma Grace. “Sit down in our Waiting Chair and wait ... wait ... waaaaaittttt!” I’ve never been known to be a “sit still, wait around” kind of gal. My sweet Momma always told me that “GO” was my middle name. And she’s right … I love being on the go so this waiting scene is taking some serious getting used to. There have been many times we have had extended stays in the hospital with Emma Grace but none have come close to this. It’s certainly hard to see her day after day in basically the same position and mainly, not able to communicate. I’m sounding like a broken record and it is so difficult, not to mention selfish, to complain as I’m thankful she’s still here. It’s just hard … Do I think God could clean her lungs, remove the vent and let’s blow out of here?? Absolutely! And there is nothing I would love more than for that to happen. What I want or plan and what God has planned aren’t always the same. He doesn’t make mistakes; we just have to trust Him … completely. (This is a reminder especially for me.)

In the days of waiting … I often think of days we wait for Christ to return. Then all these days will seem as nothing and long forgotten. There is no doubt, we have work to do while we wait and He promises the Arrival will be worthwhile.

When she started into the Transplant Phase back in late November I commented that we were putting our “Pioneering Britches” on. Well, these days we have put our “Patience Britches” on, try to keep a song in our heart for Him and smile. We do what we have to do and God, and only God, gives us the strength to do it each day.

In closing, I want to share one of my very favorite songs with you by Ginny Owens. She is an incredible lady, blind since birth and has such a gift of sharing His love. I may have shared this song with you early on in our St Jude journey and maybe I haven’t but it’s stuck in my heart and worth repeating. Even though my heart often doesn’t understand, it’s ok. God does and that’s all that matters.

We love you and thank you always for your love, friendship and especially, prayers for Emma Grace.

Only By His Grace – Momma Trish

IF YOU WANT ME TO by Ginny Owens

The pathway is broken and the signs are unclear.
And I don’t know the reason why You brought me here.
But just because You love me the way that You do,
I’m going to walk through the valley
If You want me to.

‘Cause I’m not who I was when I took my first step
But I’m clinging to the promise You’re not through with me yet.
So if all of these trials bring me closer to You.
Then I will go through the fire
If You want me to.

It may not be the way I would have chosen.
When You lead me through a world that’s not my home.
But You never said it would be easy.
You only said I’d never go alone.

When the whole world turns against me and I’m all by myself.
And I can’t hear You answer my cries for help.
I’ll remember the suffering Your love put You through.
And I will go through the darkness
If You want me to.

‘Cause when I cross over Jordan, I’m gonna sing, I’m gonna shout
Gonna look into Your eyes and see You never let me down.
So take me on the pathway that brings me home to You.
And I will go through the valley
If You want me to.

Tuesday, May 17, 2005 0:23 AM CDT

Mondays aren’t always “Mondays” …

The night ended and day started again with Emma Grace’s O2 sats pretty yucky … hanging right around 88. Her nurses came in to give her a bath and change her bedding. With the oscillating ventilator she cannot be moved so considerable cautions are observed. The Team did readjust her a bit by putting the bed flat and getting her “straightened up” in the bed. Before long her O2 sats started climbing and she settled into a nice 93. Well, guess she let us know she likes to be stretched out. As the nighttime closed in she gained more ground and when Daddy and I said “goodnight” she was holding 95-96. Can we hear a Big AMEN for a Monday LW?!?!?!? God is good … all the time!!

Know why we call it the “Yo-Yo Unit”?? It has NOTHING to do with anything but the changes that we are trying to get accustomed to. Unless you want to classify me in the Yo-Yo category but then again, that’s a given! Ha!

The 3rd floor waiting room hosted a very special birthday party for a very, very special little birthday Princess aka Christal. Bless her precious heart – she wanted Barney & I to be able to attend her party and her Momma explained there was no way we could both leave Emma Grace. So Christal, who is the MASTER of negotiations, decided she would just bring her 7th Birthday to St Jude. It was a blast! Several of the Dream Team Girls showed up as well as Laura and Sarah. The room was full of balloons and the wagon was running over with presents!! Thank you Christal for being such a precious little friend and for sharing your party with all of us!! We had a great time and we love you!! Feel free to drop Christal a note if you like … http://christalinfo.servemp3.com

Okey, dokey … time to give it up and rest for a new day. We cannot thank you enough for your faithful prayers for Emma Grace and her friends. Also, for lifting Daddy and I up as well. We certainly know that God is holding us up everyday. May His Sonshine surround you!

Only By His Grace – Trish

Monday, May 16, 2005 0:16 AM CDT

And howdy to you from “Yo-Yo Land” aka ICU!

As dizzying as it seems, Emma Grace goes up and down, up and down, up and down. Dr. Ray keeps reminding us that we can’t just evaluate one day … we have to put several days together to see a trend. Her O2 sats are not holding as good today and they had to turn the oxygen up again. She is still in acceptable levels just not as good as yesterday. The chest x-ray still looks about the same the past couple of days – both sides still pretty cloudy. We are anxious to hear from the Team tomorrow to see what their take is on her progress / status. Guess Who already knows all about it and is already there? You know He is and we’re holding His hand as He carries us all.

Saturday was a day of visitors!! We knew that my dear friends from high school were coming to see us – Darlene, Michelle, Karen & Tammy. It was SO good to see them and we had a great visit. Karen’s brother, Bill, lives in Memphis and has a wonderful steak house in Bartlett called “Side Porch Steak House”. I’m telling you … steaks that MELT in your mouth. Needless to say, we did some serious eating!! The food was outstanding but the fellowship was even better. It’s always fun talking “old times” and seeing how crazy we really were. Now, we all have kids doing the same crazy stuff we did. The girls had a get-a-way overnite stay and don’t you know that was a van load of story telling!! It did our hearts so good for them to come spend time with us. Thanks Galz for the food, fun and fellowship!!! Love ya’ll!!

Also, we had surprise visitors – Paula, Alicia and Melinda from DMT in Siloam Springs. When they called the room to come upstairs Barney thought it was Darlene and the girls. I went to meet them at the elevator and was going to scare who I thought was Darlene (as she’s pretty skittish). Well now, I was the one who got fooled … off walked Paula, Alicia and Melinda!! We love being surprised and how sweet of them to also drive all this way for an afternoon visit. You got me and we love ya bunches!!

We also had the blessing of seeing Christa and Dawn from Germantown Baptist Church. It is always good to see them … they are such sweethearts that God shared with us.

Today is Christal’s birthday … HAPPY 7th BIRTHDAY SWEET GIRL!!! Christal also shares this day with our grandson, Patrick who is 3 today. HAPPY BIRTHDAY PATRICK FROM PAWPAW & MIMI TRISH!!! Today is also my sweet older brother's birthday, Jerald. Jerald is celebrating his day on the streets of Heaven. HAPPY BIRTHDAY BUB!!! Love & Miss you everyday and looking to see you again!!

Thank you so much for your continued prayer for Emma Grace and her friends. Also, you cannot know how uplifting your words of encouragement and notes of thoughts and prayers mean to us. Our hearts are continuously warmed by your overwhelming love. We love you!!

Only By His Grace – Trish

Sunday, May 15, 2005 1:48 AM CDT

Hey Everyone!

The shortest of shortest notes especially for Momma Trish … Emma Grace has had another good day. Her blood gases are improving and the nitric oxide is being weaned. Her kidneys are working like a charm and have relieved her of lots of fluid. LW’s … LW’s … LW’s. Thank you Lord!

We have had boo-koos of wonderful company today and we’ll update more later Sunday evening when things settle for the nite. Just wanted to let you know our precious is doing good and thank you so much for your faithful prayers!!

Only By His Grace - Trish

Friday, May 13, 2005 11:42 PM CDT

Happy Birthday, Granny Pat!!

Another good day for sweet Emma Grace!! She is continuing to do her stuff!! We all have to keep in mind – she likes to do it her way, slow & easy. The Team was very encouraged they were able to turn the oxygen setting down on the oscillating vent. She started at 60 percent this morning but is now down to 40! Her O2 sats are holding steady at 96 and blood gases are looking good. She continues to “t-t” which is great … that is keeping her away from doing any hema filtration. In fact, they were able to decrease the buemax dosage which is a diuretic they have been using along with lasix.

Yes indeedy!! God is so very good and we are thankful, Thankful, THANKFUL for His love, mercy and grace.

Today I had the grand blessing of getting to keep Miss Kylie Hope, Christal’s baby sister, while Chris and Drewie were getting packed to move to Target and while Christal was getting her daily chemo. Now, don’t cha know I was in hawg heaven?!?!? She is such a sweet baby girl and smiles all the time. We even got to cuddle on the couch in the parent room as she got sleepy after eating her bottle so there we snoozed with her on my chest. They got moved in today and we are just tickled they are in Target II with us and on the same floor!! In fact, we’re at one end of the hall and they’re at the other in #226. Now, if we can just get WhistleBritches rolling along so we can get closer to being out and back at Target House.

Last night was one of those nights I had to focus on keeping my eyes up and try not to look right or left. For some reason (gee, I wonder) I was trying to let the week overwhelm me and discourage me. I know that God is in full control and as badly as I want my baby girl back in my arms, looking up at me with those baby blues I am aware that it will be in God’s time. My longing was trying to overcome my patience. So as I lay in bed last night, I prayed and I prayed and I prayed. Sometimes I get to the point where the words won’t come and last night was one of those nights. So I just asked Him to wrap me up in His love, let me climb into His lap because I know that’s where my baby girl is. I can’t tell you the calm that came over me. It was peaceful, serene moments. I continued to envision that Emma Grace was on one leg with me on the other as He and I both stroked her ever so gently. It was absolutely beautiful and there He let me rest. I’m not sure that I have slept that soundly in weeks. Thank you Lord for such a precious time and giving me just what I need when I needed it most!!

We cannot thank you all enough for the wonderful, encouraging messages, phone calls, emails and cards. Most of all, for your continuous and faithful prayers. You all are such blessings to us and we thank God for you always.

Have a blessed weekend and Keep Looking Up!

Only By His Grace – Trish

Please continue to pray for Tina as she is recovering at home now. I talked to her this afternoon and she is feeling some better. I'm trusting Mr. Jeff is being a good nursemaid. Also, please remember the family and friends of Cory Horton, Memphis’ St George’s swim coach of which Angel Ali and her best friend, Elizabeth were team members. He was involved in a bicycle accident on Tuesday and passed last night.

Thursday, May 12, 2005 10:00 PM CDT

Praise the LORD

All we can say and need to say is thank you JESUS!!! After I put the urgent request on the web site this morning I returned to Emma Grace’s room to find her oxygen level on the raise. Her urine output which had been down to almost nothing returned to 100 to 160 cc an hour. As long as her kidneys can maintain 50 cc per hour all is well, if it drops below 50 cc the team will start blood filtration to help remove fluid. In order to do the filtration Emma Grace’s blood will have to be thinned. We had problems from bleeding on Tuesday and need all of the clotting factors on board to help control bleeding issues. The doctors finally have a good idea as to what actually happened on Tuesday. The Team drew cultures from every line and from the ET tube in her throat as well as from her blood. The results show that there is a yeast infection in one line, her ET tube, and in her blood. Doctor Ray said it is a very rare strain but that it is treatable, so the new meds have been added. The doctors feel that the fungus (yeast) slowly grew until it reached a level strong enough to cause problems, and cause problems it did. We always knew we could ask for prayer and that all of you would come thru for our baby girl, thank you seems so inadequate but we really do not know what else to say.

Please remember Tina Haynes as she went home from the hospital today. She had surgery on Monday and she is still very sore. Caringbridge.org/la/stanton

Tammy, thank you for your visit this evening, it was very good to see you and see how good you are doing. Tammy’s daughter Hanna received her angel wings last august after a very hard battle with the beast that no child should ever have to endure. Caringbridge.org/ms/hanna

GOD IS GOOD; ALL THE TIME
Emma Grace’s Daddy

Wednesday, May 11, 2005 11:51 PM CDT

5/12/05/ 3:20 pm
Thank you for all of the prayers this morning when we needed them urgently. Emma Grace stabilized around 8:00 this morning and has slowly improved thru out the day. more to follow later. thanks Daddy

Thursday morning 6:30
Urgent prayer needed. Emma Grace has slid backwards thru out the night. We need all warriors on this with us. thank you, Daddy

Well now … think I’ll ever make the mistake of leaving again?!?!?!? I would say Emma Grace has made her point and made it well. Gotcha baby … LOUD & CLEAR!! The wild thing is … we never told her I was going to “be out for the day”.

Emma Grace has adapted to her new ventilator and seems to be handling it pretty well. They have been able to wean the oxygen down ever so slightly and her blood gases have been much better than yesterday. She has not made great strides today but we are thanking God and holding to even the minute of improvements.

Dr. Ray visited with us this morning and said he feels better about her condition today but he is still cautious. The Team is not sure what or why caused her rapid decline yesterday and Dr. Ray said they may never know. He said within the time frame that she was spiraling downward they were scrambling for something to work as she was slipping away right before their eyes. I could tell even with his recalling of these details, he was scared just like we were. He reiterated she is still a very sick little girl but if she can just make these micro steps with us they have the game plan in place for her … “she just needs to dance with us” and get through this. Oh great … does Dr. Ray not know we’re Baptist and they’ve never been real crazy about that ‘dancin’ bit?? (Not that Emma Grace ever knew any difference!!) I know, I know, he didn’t mean literally!!

Needless to say, we’re so very thankful for another day He has given. He has certainly wrapped us up in His love, mercy, grace and strength. The extra dose of strength He has provided is greatly appreciated as Daddy & I are emotionally whipped. Most of all, we know beyond any doubt that God is cradling Emma Grace in His gentle, loving arms. And there she rests.

Thank you for your faithful prayers for our baby girl … you cannot know what a comfort it is to know so many are lifting her to His Throne. He has not left His Throne and has all this worked out. Keep looking up with us. We love you!

Only By His Grace - Trish

Just for the record:
The trip from NWA to Memphis can be done in less than 4 hrs. (normal conditions 5 hrs minimum) We are so very thankful God placed angels all around us on the Big Red Truck. I sure felt sorry for the one riding on top though!! Rest assured, Nanna is ok and didn't even offer to drive this trip. I was a bit concerned she may need the armrest (and other upholstery) surgically removed by the time we landed in Memphis. But she was a trooper and I'm so thankful she was able to come with me. Her story may be different! It's amazing what you can do with 4 way flashers, a CB and lots of prayer. God just cleared the path on I-40 and protected us all the way! And for those of you who know I-40 agree that is nothing short than God's hand at work!!

"Have truck, will travel!"

Wednesday, May 11, 2005 0:00 AM CDT

A VERY LONG DAY

I do not even know where to begin, to say the day was an emotional nightmare would sum it up best. The surprise for the day that Trish left hanging was that she snuck home to surprise Eli at his talent show at school this afternoon. He was very surprised, and momma said he did a very good job with his song that he sang. I guess the surprise was really on momma, once she arrived at the school she was informed that today was Emma Grace Day at Prairie Grove School. The kids had a fund raiser for Emma Grace which included hat day, donation jars, and paying to have a teacher kiss a pig. The teacher that raised the most money had to kiss the pig. I guess we now know which teachers are popular.

When Momma left the Jude early this morning Emma Grace was rocking along at a smooth even pace. We had talked to Dr. Barfield about her leaving and he said by all means go everything was going good and that it would be fine. WRONG!!!!! Emma Grace has now proved that she wants momma and daddy both here. About eleven o’clock this morning things went down hill in a hurry, the pressures on the ventilator had to be turned up higher than they had ever been before. She has know been switched to a different type of ventilator that helps not only get air into her lungs but also get the CO2 out. She has had a bunch of news meds added to help bring things under control, from all appearances they are working. The Doctors have said that she is better than stable as she has started climbing out of the hole that she fell into today, a very sick little girl but still making progress. Dr. Barfield’s words were (“I will have sweaty palms for a while”) kind of sick.

Momma was able to see Eli perform before her and Nana called air traffic control for clearance to take off. Momma actually called the Arkansas State Police and advised them of the situation, they told her to put the emergency flashers on and roll. Trish said that she was a little nervous when she passed a trooper sitting in the median with her running way over the speed limit, it was all for naught as he did not bother her. She also said that it was amazing the way the big trucks gave her the fast lane on the interstate. I have a CB radio in the pickup that she was using to inform the drivers that she was in a hurry and needed thru and she said that the trucks would slide to the right and let her thru. Nana said that she has never been all the way from home to Memphis in the fast lane. Trish said she had to get in the right lane to pass one car. Guess what was driving the one car that would not move to the right, a county deputy. It was sure good to see her walk thru the door.

I would like to think everyone that rallied around us today both in person and in spirit. There is no way I can even begin to know how many prayer warriors have been on there knees talking to GOD about Emma Grace today. It is always special when a stranger that has found us and followed us thru our website always seems to call or show up to introduce them selves and let us know how many more prayer warriors are storming Heaven on Emma Grace’s behalf. A good example of GOD sending us a little note saying here I am. Thank you Whitney, I am just sorry things were so upside down when you walked in.

GOD IS GOOD
Emma Grace’s Daddy

Tuesday, May 10, 2005 0:23 AM CDT

The short and sweet version of Monday ... (sorry, it's late and I've got to rise early - stay tuned to "why" in tonite's entry)

First ... Tina's 4 1/2 hr surgery seemed to have gone very well. Jeff called this afternoon late to say that all went well. The docs felt the many polyps were benign but they are submitting everything for biopsy for confirmation. She is in the recovery mode now for awhile. Please continue to lift sweet Sis in prayer as she heals. Also, for Jeff as he tries to be a good nursemaid. www.caringbridge.org/la/stanton

Emma Grace could not let Monday go by without a little "whiffle" (is that a word?!?) here and there today. They turned her to her back again this morning as she has been belly down for a week. Her O2 sats are still not the best since Sunday and have remained pretty much the same even turning her over to her back. This evening she started "junking up" again, O2 started dropping more and they were able to suction quite a bit out. Her oxygen was still holding a bit lower than they had hoped so they turned vent pressures back up some again. I'm thinking we need to rename ICU the "YoYo Unit" as that's the way it feels at times. But we are ever thankful that Emma Grace is right here where she needs to be and most importantly, we know God has everything in full control.

It is such a blessing to know Dr. Ray is on service for two weeks. He is confident that we are headed in the right direction just needing to take things slow and easy. I'm thinking let's not 'slow' this pace though ... it seems we're at a snail's pace now. (Now why am I being a Negative Nelly??) Because if you look at where she was at 5 weeks ago and now, she has really come a long way, baby! Bottom line ... whatever it takes to get our baby girl better. And we're here to do just that. Truly, I am thankful for His Healing Hand and I know He's just not finished yet. I'm quite sure she is showing Him those baby blues as He caresses her little body. Doesn't that visual just warm your soul?

It has been such a relief to get to see her face up again. I still can't get to those sweet cheeks yet but I'm waiting ... patiently ... as I've saved many, many smooches just for them.

You all bless our hearts more than you could ever dream. God is so amazing to send you to walk this journey with complete and unconditional love. We love you and thank you for your continued prayer for Emma Grace and the many precious children & families who fight the fight. Keep Looking Up with Us!

Only By His Grace - Momma Trish

Monday, May 9, 2005 1:49 AM CDT

A new week … looking for more LW’s.

Sunday has been a fair day for Emma Grace. I think she did so much progress the past few days she had to slow up just a bit. The Team turned off the Nitric Oxide first thing this morning as well as went down another step on the Peep pressure on the vent. All was ok, except evidentially Emma Grace wanted the Nitric back – her O2 sats started to drop. When they turned it off, it was at 1.0 ppm but they turned it back on at only .5 ppm. They are going to wean it slowly by 1/10’s and see how she does. See, she’s letting them know once again we do things a wee bit slower in our neck of the woods and besides, she wants to do it “her way”.

She has been a little too active Saturday and part of Sunday as she was pretty awake and jostling around quite a bit. The Team felt she may have built a resistance to the sedation meds so they upped her Versed to relax her some more. They thought this could be part of the reason her 02 sats dropped as they have not been as high as Saturday. They also started her on some IV insulin as her glucose has been creeping up a bit. They are monitoring it pretty close. This increase probably from the steroids.

I’ve had a good Mother’s Day, both my babies (Sorry Eli, you’re still my baby too!) were here with me today. Nanna, Poppa, Chuck, Kellye and Eli took me to supper Saturday night and out to breakfast Sunday morning. We had a great time getting to visit and catch up on local events as well as getting the Vegas Wedding update from Chuck and Kellye. I got to see the pictures which were beautiful and they gave me my own set to keep one of which was in a gorgeous frame. As we speak it is on the wardrobe cabinet in our parent room aka “The Closet”. Eli gave me a precious heart necklace with diamonds. Barney stayed with Emma Grace so I could go out to eat with the crew. He's such a sweetheart. Besides, Barney had already bought me some much needed clothes (since we sent our entire spring/summer attire home last fall). The best part was he let me go pick them out. That’s a great way to get what you want, eh? Needless to say, I have been spoiled for Mother's Day again.

After the Thurman Crew left to go home around 2 pm I decided that I needed to check on the Maxwell Crew which is my Granny Thurman’s family. You may recall at Christmas while we were in transplant and not able to attend Aunt Judy’s annual gathering but we still “were there” via webcam. Well, Aunt Faye (actually she’s my great aunt but she prefers just “Aunt” even though I treasure her as my aunt that is really great – and I’m not talking years) was having the Maxwell Clan over for lunch. I thought I would call and we’d play “round robin” with the phone. It was so wonderful!! Aunt Faye answered and I could almost smell the good ole home cooking over the phone. One thing is for sure – I feel the love all the way in Memphis with each and everyone there. We have been so very blessed that our family, as extended as it may be, has continued to stay so close. There are only a few that don’t live in the NW Arkansas area and considering how many there are of us - that is truly amazing. Some of my most treasured memories in growing up were the many Maxwell gatherings and especially, the fun we shared at the lake every year. It was always a hoot when the Park Ranger politely “quieted” us down from all the laughter. They were always amazed that it was just good ole sober fun. I think the 'sober' part often threw them off because we aimed to have fun and that’s exactly what we did! (Well, that was a nice little trip down memory lane … I'm guessing my Maxwell clan has the same smiles on your face as I do while reading this, eh? And also, the same warmness in our hearts of great times we’ve shared and continue to share.)

Speaking of special family folks, let’s talk about my Aunt Judy. She’s my Daddy’s sister and throughout my entire life she has been aunt / sister / and best friend all wrapped up in one. From the time I could walk, I would gather my diaper when Granny and Grandad drove in the drive because I wanted to go home with them. Therefore, Aunt Judy had me around quite a bit. I’m still not sure how she and Charlie ever married as I seemed to go on quite a few dates with them … maybe that was Granny and Grandad’s idea! HA! As onery as I was (uh hum .. 'am') I'm really shocked they decided to have children after putting up with me in the early years!! (no comments, Uncle Charlie!) Anyway, she has always been a great inspiration to me and I have the utmost respect, admiration and love for her and her family. She shared a couple of wonderful verses and a sweet note in the guestbook last night that God knew I needed to hear. It has certainly been one of those days of bittersweet emotions. This entry touched my heart and I trust it will yours as well. Also, she reminded once again that God is in control. Ain’t that the truth and I’m so very thankful. Thank you Aunt Judy for always letting His light shine no matter what – I love you! Here's a portion of her entry:

" But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” ISAIAH 40:31

They say that sometimes God calms the storm -- and sometimes He calms US in the midst of the storm. We're praying that you will soon be seeing rainbows and the worst part of the storm will be behind you.

"Behold the Lord's hand is not shortened that it cannot save; nor His ear heavy, that it cannot hear." ISAIAH 59:1

Our hearts are overwhelmed at the love you all show to our family. I know God is setting aside very precious jewels for your Heavenly crowns and I believe among the many jewels will be for your faithful prayers for Emma Grace and her friends. Thank you for your continued prayers and May His Sonshine wrap you up!!

Please be sure to lift my sister, Tina up in prayer as she is having surgery at 1 pm Monday. As much as she has hated not being with us during thie ICU stay, the same holds true for me not being able to be with her for this surgery. God knows and He already has it worked out. I love you Tina and I’m with you always right here in my heart! Feel free to send her a note of encouragement as I know she will have lots of time catching up on the guestbook with her upcoming “idle time”. www.caringbridge.org/la/stanton

Only By His Grace - Trish

PS ... Also, please remember Bubba Eli - He is singing in a talent show at school on Tuesday afternoon. He gave his Momma a "private rehearsal" and did a really good job. (Of course, I'm going to say that!) Break a leg Eli! (Don't take that literally, PLEEZ!!! Nanna - explain it to him) Feel free to drop him an email ... I know he would love it! Thanks!
stjudebubba@yahoo.com

Saturday, May 7, 2005 11:30 PM CDT

SHORT AND SWEET

Emma Grace decided that the doctors had pushed her fast enough. Today was a good day with two little wins; the vent was turned down from eight to seven (five is as low as they can turn the vent down to) early this morning. The Nitric Oxide was turned down to 1.0 from 2.0; it should be turned off in the morning. Emma grace’s blood gases were okay but not good enough to get the vent turned on down today. The nurse drew labs at 10:00 pm and the blood gases are heading in the right direction, now if they will continue through out the night. Labs will be rechecked at 4:00 am, every six hours.

Poppa and Nana as well as Uncle Chuck and Aunt Kellye and Bubba Eli have been here most of the day. Emma Grace has been able to show off a little bit for them. She will move her head or her mouth when you ask her to; if you are real lucky she will give you a glimpse of one of her baby blues when you ask. It is been a difficult day for everyone to have to see Emma Grace like this but at the same time it has been good for them to see the progress that she has made as well.

Please remember to tell your mother happy mothers day. Join us in praying for the mothers that are facing the day with out their loved one, we know way too many just from St Jude. So please lift these special mothers up to GOD. Thank you for all of the prayers that have been sent, and will be sent to GOD on Emma Grace’s behalf. I have people ask me what they can do for us and all I can say is pray please pray for our baby girl. A few just do not get it; most tell me that that has already been taken care of, and to this special group of friends we would like to say a very thank you and we love you.

GOD IS GOOD ALL THE TIME
Emma Grace’s Daddy

Friday, May 6, 2005 11:57 PM CDT

Well … are ya ready for this?? Today has been a day for BIG WINS!!! Hallelujah!!

Emma Grace has been cruisin’ right along today and doing very well. It just amazes me to see God’s Hand cradle her from being so very sick on Monday to such a turn around and taking even bigger steps today. Her vent pressures, oxygen, nitric oxide have all been turned down about two rounds today!! Best of all, she is tolerating all the adjustments very well. Dr. Willie and the rest of Emma Grace’s Team have been very pleased with her progress today and all came thru with big smiles on their faces.

Daddy and I have been seeing little changes in her movements the past 2 or 3 days. She is still much sedated but still no paralytics are in place so she is able to flex and wiggle some – as well as she can with all her tubing, lines, "accessories", etc. She has been moving her mouth and tongue on command for a couple of days. Yesterday, she nudged her head to one side like she wanted to lift it up. Also, she would give us peeks at one eye or the other (whichever one was not on the pillow). She still is on her tummy and proves she likes it there pretty well. And today, she has been moving her head, opening her eye and keeping it open for 5-10 seconds like she is trying to get a good look-see around. Plus, she will flex and roll her shoulder. Chris, Christal’s mom, was in the room with me this evening doing lotion therapy on Emma Grace’s arms and hands. Get this … Chris was talking to her (gee … imagine Chris ‘talking’ ha!) while holding her hand and Emma Grace give her a slight movement with her right hand. Chris was so tickled and need I say, I was ecstatic as well. Kinda similar to the night I got to feel Kylie Hope kick Chris for the first time … same joy with both of us. Makes the picture a little clearer about these children being like our own, eh?

It has just been a really good day and there is nothing else to do but just say “Thank You Lord” and praise Him for His overwhelming goodness and mercy.

Alexandra, Dr. Ray’s daughter, has been asking to come eat with me at the cafeteria sometime. She specifically asked for ‘chicken strips’ (pretty safe choice). Well, yesterday was her birthday and Dr. Ray and I arranged for her to come today for our “table for 2 luncheon”. Alexandra is well aware that Emma Grace is in ICU and for some reason, decided we should “do lunch”. She just turned 6 yesterday but, trust me, she is going on 26. She is a very bright, witty and precious little lady. Anytime that she and Emma Grace would play together, she would be such a little care giver. Always making sure Emma Grace was comfortable, etc. When she arrived in the cafeteria, she found her own specially decorated table, table cloth and all. Her lunch was ‘served’ along with her custom made placemats and her “RESERVED” seating sign. Thanks sweet Laura for your creativity in making the placemats, signs and helping me set up!! Perfect ... just perfect! (No, we did not have to make reservations for such a special occasion … this is the still St Jude cafeteria after all.) It was just fun!! And I had a blast doing it. I suspect she had a great time as well. We ended up spending the next 2 ½ hrs together just playing. She is always having her friends at school pray for Emma Grace, they send her pictures and notes. Alexandra is such a compassionate little giver, it’s hard to picture she’s just 6. She is just a doll and as if she hadn’t already won my heart, she told her Daddy that she would rather not go to the movie after our lunch because she wanted to hang out with us a little while longer. Ohhhh … it was good therapy for us both I believe. It sure makes me want Miss Emma Grace to get in gear so we can all play together again soon.

The Nursing school from NTI in Springdale, AR came for a tour today and we got to meet Sandy Walker, who is an instructor that also goes to church with Nanna and Poppa. She regularly signs the guestbook and is such a sweet lady whom we have be so blessed to meet other than via website. Also, Nita Webb is an instructor at NTI and I had met her while we were in transplant with our dear friend, Monie Collins from Siloam Springs, who is a nursing student and they had all come to tour St Jude. Monie is just precious and keeps up with us regularly. She and her husband, Brody, go to Weddington Missionary Baptist which is a sister church to our home church, Summers. Anyway, Monie organized the transport and orchestration with the dear folks at Weddington and the nursing school trip. They sent us a wagon load, I mean a WAGON LOAD, of care package happies for Emma Grace as well as Daddy and I. It was incredible as they covered all the bases. Thank you so much Weddington Missionary Baptist for the wonderful support for our family! We look forward to being back home before too long so we can worship and fellowship together. Also, thank you Nita, Sandy and all the wonderful nursing students for your precious cards and gifts! You all made our day by taking time out of your busy agenda to spend time with us!!

I also got to see Stormy Lott and her sweet family. Stormy looks wonderful – lots of dark curly hair. Her’s are chemo curls also. She is such a sweetheart and it was so good to see them. Thank you Tonya for the wonderful book … I’m already finding your notes of favorite scripture in it! They are perfect … thanks!

Do you think it’s been a GRAND OLE DAY OR WHAT?!?!?!? You know, it’s hard to think that any day is a “bad day” as no matter what God has something planned for the day. It’s a day that He and He alone made and often I have to conscientiously remind myself to make the best of whatever situation we are facing. I guess it goes along with the old saying, “There aren’t really many bad days – some are just better than others.” Thank You Lord for this being one of those ‘Better Days’!!

Bubba Eli, Nanna, Poppa, Chuck and Kellye are leaving at the crack of dawn in the morning to come our way!! We are looking so forward to getting to spend time with them and hug some necks! We’ll get to spend Mother’s Day together – a little different this year than times past, but at least together.

We love you all more than you can know … I know I say that often but it never seems to be enough nor does the fact that we thank you for your faithful friendships and appreciate your prayers for Emma Grace and her friends beyond words. We are humbly blessed that God shared you with our family. Have a wonderful weekend and keep praying for more LW’s or BW’s – they’re all part of His plan filled with love, mercy and grace.

Only By His Grace – Trish

Thursday, May 5, 2005 11:14 PM CDT

Another Good Day … Thank you Lord!

Emma Grace just keeps the pace today with her LW’s and we are so thankful!! The Team has lowered her vent settings again today as well as the nitric oxide. So far the bacteria seem to be runnin’ for the hills. The new mackdaddy antibiotic, lynasolide (spell?) that were started on May 1st is doing exactly what it needs to do. That in itself is a huge answer to prayers. The Infectious Disease Team is still watching her closely and to see if anything cultures in her recent lab work.

We are so thankful for the steady progress God is bringing our baby girl through. Momma and Daddy are getting a wee bit anxious but we just have to trust she will come around when He says it’s time. There are times when it seems like we just arrived in ICU but mostly, it falls in the “time warp” category that has lost time completely. Today marks Week #5 in ICU.

Daddy said that the ICU nurses were asking to see some pictures of Emma Grace so he put me on “Project Photo”. We have several pix that I mounted on her window in a collage. For those of you who have seen the infamous “Tater Diggin Dance” that was posted on the website in the past, you’ll be happy to know it is on display as well in her room. It appeared to be a favorite with many up here as well. It’s like one of the nurses was telling us, they usually only see the children when they are really ill, so it’s nice to see them outside the realm that brought us to ICU.

We got to see Jillian & Chuck Zimmerlee from Kentucky. Jillian has returned for checkups and made sure she got to come see Emma Grace. She brought her a brilliant color mobile for her room. It now hangs over her bed and will be one of the first things she gets to see. Thanks Jillian & Chuck for taking time to spend with us!

Barney went to give platelets this afternoon so it was just “us chicks”. Emma Grace and I had the tunes filling the room and just enjoyed talking – even though it was Momma doing all the talking. She hears though and I guarantee that she is cataloging every thought and the order in which she wishes to deliver. We are ALL TOO READY!!

Brent Nason’s sweet Momma, Tonya, came by to enjoy our “girl time”. We had a really great visit and it was so nice for her to come hang out with us. Brent has been in the hospital for fever and was released this afternoon. She has all boys so I think she enjoyed the girl time as much as we did. Thank you Tonya for hanging out with us and being such an inspiration. You all are just precious.

Believe it or not … I’m going to call it a night. I have one more load of laundry that should be finished by the time I get back to them on the 2nd floor. I don’t think anyone will need to rock me to sleep tonight. You all cannot know how wonderful and encouraging your many notes are to us. It is amazing that God has sent such faithful prayer warriors. Thank you so much for your prayers and love!!

Only By His Grace – Trish

Ps … Please remember Tina in your prayers as she is having her surgery on May 9th.

Happy Mother's Day You Sweet Mommas!

Thursday, May 5, 2005 8:16 AM CDT

It has been a good day for LW’s (little wins). Emma Grace has sailed right thru the day just like she knew what she was doing. The marker in the blood that shows infection has reduced by more than 50 percent since Sunday. The blood cultures that were drawn on Tuesday had not grown anything as of yesterday afternoon. Her oxygen (O2) saturation is holding at 100 percent and her blood gases show steady improvement. The blood gases are what the doctors look at the most when deciding what to do with the ventilator. The doctors were able to turn down the Nitric Oxide from 5.0 to 4.0. Dr. Willey told us yesterday that we would go ever so slow getting her off of the Nitric this time. The O2 was turned down a little bit as well and so was the inhalation pressure on the vent. We know that the LW’s are blessings from GOD and answers to a lot of prayers. We are ever so thankful that we have so many prayer warriors working on this with us.

We are able to talk to Emma Grace and get a response now as well. The drug that had kept her paralyzed has been stopped, which means that the sedation meds have been increased. When we talk to her she tries to open her eyes or she will move her mouth when we ask her to. It really does feel good just getting to see a twinkle of one of her baby blues once in a while. We just continue to pray for more LW’s as we start a new day.

Dr. Turner came by this evening for a visit. Dr. Turner is the dermatologist that Emma Grace saw when her GVHD skin rash was so bad. His office has kept up with Emma Grace as she has stolen their hearts as well. He brought along a card that the girls in his office had made for her. Thank you Dr. Turner and staff for remembering our baby girl, Fetch is waiting ever so patently for her to open her eyes and wants to play again.

Miss Christal and her family arrived last night, Christal wanted to come see Miss Trish as soon as she was able to see St. Jude and would not take no for an answer. I really thank her momma used that as an excuse to slip out and let Drew unload the car on his own. Of course we did not complain it was sure good to see the girls. Please be sure to add this family to your everyday prayer list, Christal has relapsed and know must undergo chemo. She has had all of the radiation that her body can handle, so now it is time to try anything that the doctors think might work.

It is a very reassuring feeling to know that we have so many prayers being said every day for our baby girl, saying thank you does not feel like we are saying enough but we do not know what else to say or do. Just know that every prayer and every thought is always welcomed. Thank you!!!!

GOD IS GOOD
Emma Grace’s Daddy

Wednesday, May 4, 2005 3:37 AM CDT

Thank you Lord for Tuesday! He knew we couldn’t handle another Monday.

As I read and re-read the last entry (before posting it) … I tried to find something which indicated we had at least taken one step forward in the midst of our 18 steps back. Sorry crew, it was just one of those days. So, hopefully, she has gotten those days behind us for awhile.

Emma Grace has had a better day … so let’s talk improvements, shall we?
First, her left lung is sounding and looking better on x-ray. The paralytics are completely off now which allows her little body to twitch and flex muscles to try to keep fluids moving. Now, she is still on her tummy and even more sedated than before when the paralytics were on board. The Team wants those muscles to keep responding but her to be comfortable in the process. One of the vent pressures was able to be reduced by 1. (Hey, we’ll take 1 – that’s a LW!) Her O2 saturations as well as blood gases are looking better, blood pressure much more managed now (even close to normal with the help of great hypertensive meds), and her kidneys seem to be working well. The ultrasound shows good “flow” through the liver, kidneys, etc.

When the Team did the recent bronchoscopy last week they took a sample for biopsy and culture to make sure we had all the antibiotic bases covered. She is testing positive for VRE in her left lung. We knew she had it in her digestive tract but it has decided to venture out from that area. VRE stands for vancomycin resistant endococis (spell?? Who knows??) Basically, it means that this colony of germs is not responding to vancomycin. The good news is that the antibiotic to cover this VRE is already on board and has been for since Sunday. They took more cultures and we should know something on Wednesday. Specific Prayer Request Pleez! We even got a visit from ID – Infectious Disease on Tuesday. She felt Emma Grace was on the right track with the correct meds on board to combat these latest infections. They will certainly be keeping a close monitor on her med status as well as her lab work.

Now WHEW!! … in saying all that, let me say, Thank You Lord!! Because in the midst of what we see as backing up, God is leading the Team to covering all the bases for treatment. He has this all worked out and has provided us the best possible Team to get our baby girl well. Bless her heart – she just needs more rest.

This is possibly the most stressful situation we have faced so far with our Emma Grace and I thought up until this point we had covered a lot of the St Jude bases for patient care. I don’t mean for that to sound negative and I certainly don’t wish for it to sound selfish because I am thankful we are able to still be fighting. The “ups and downs” on the vent are enough to make you batty. She is just so vulnerable to every little thing right now. It’s just hard. God has a reason to have us here so here we’ll stay until He leads the way out.

I think Emma Grace has proven that she REALLY does not want her Daddy too far out of sight. She is 3 for 3 in “Set Backs While Daddy is Out”. Ok, Miss Emma Grace, you have proven your point that you’re Daddy’s Girl and he’s here now so can we get on with this healing process again?? We are so thankful that Tango has been so wonderful about his being here. It just amazes me that all I had to do was pick up the phone and talk to his dispatcher and he took care of the rest. Thanks Jason for taking care of the details … you cannot know what a blessing you all are!

Today has been a day of sweet visitors (not that we’ve had any SOUR ones! Hello, it’s late) – Ashley, Donna & Floyd Garrett. Ashley is having tests this week. Please say a prayer for the ALL CLEAR. Carol, Tori’s grandma came by while Tori was in MRI. It was good to see her and hopefully, we’ll get to see Tori before they leave. Also, Mimi Sharyn showed up to surprise us AGAIN. This is twice in one week … do you think I may be getting spoiled?!?!? Christa from Germantown Baptist came by for a visit this evening. She is such a sweetheart. She is involved with the Patchwork Prayer Group at her church and they make wonderful quilts for our St Jude babies.

Late in the afternoon came a very special visitor – Big Ben’s Dad, Tom came by ICU for a visit. It was really great to see them (of course, I had to go find Jennifer and Eli.) They truly blessed our hearts to take time out to come to see us with their plates already full. Little Eli (like I’ve not been partial to him from the start) was downstairs with those twinkling blues eyes and red hair. He’s such a little huggy man – he immediately let me pick him up and give him some love. Of course, I promised I would deliver those to Emma Grace for him. Please keep this precious family in prayer as they face each day, boldly, letting God’s light shine and always smiling. Thank you again, Tom, Jennifer and Mr. Eli for being such a blessing!

Speaking of Eli’s that I’m partial to … There’s this big 13 yr old that is coming to see his Sissy, Momma and Daddy this weekend. Nanna, Poppa, Uncle Chuck and the newest addition, now Aunt Kellye is coming to spend some time with us. It seems like ages since we’ve seen them so we are ready. Looks like we'll celebrate this Mother's Day at the Jude. (The sad part is, I didn't even realize it was this weekend. It's that time warp thing, ya know.)

Granny Pat is here with us this week and it’s been nice having her here again. When she came on Monday we anticipated Barney being on the road this week so she didn’t want me to be alone. Things change in a moment’s notice around here … as if you didn’t already gather.

I’ve saved this for last – with the paralytics being completely off, I got a small, ever so slight peek at those baby blues!! It was with one eye as she lies on her tummy with her head turned to one side then the other. It’s pretty cool to know she is acknowledging your voice and touches now … moving that tongue and lips at command is really great. I’m sure if she had that tube out of her mouth she would tell me how great that is!!

We love you and know we are ever grateful that you’re continuing to lift Emma Grace and her many friends to His Throne. You are the best!

Only By His Grace - Trish

It seems I referred to "covering bases" or "bases" quite frequently in this entry. Sub conscientiously, I must be trying to help Sister Tina coach t-ball from afar!! Way to go Sis! I'm proud of you!!!

Monday, May 2, 2005 11:42 PM CDT

WHERE DO WE BEGIN

To say today was a ruff day would be an understatement. During the night Emma Grace’s O2 (oxygen) saturation level started down. The doctors turned the ventilator up trying to stop the slide. It finally leveled out until the team had to turn her over on to her back to do an ultrasound of her liver, gall bladder, and kidneys. Once on her back it started down hill again, which required the vent to be turned up some more. As soon as the ultrasound was done Emma Grace was placed back in her tummy which she seemed to like, her O2 level started to recover some what! It is still lower than it has been in quite sometime. Lab check showed that there is a strep infection in Emma Grace’s femoral line, the entubation tube and in one of her central lines as well as in the blood stream. The chest x-ray did not look as good today as it has looked the last couple of days, which the doctors say is from the infection. The doctors have switched the antibiotics to try and knock the strep before it gets stronger. The ventilator had to be reset to deliver breaths by pressure instead of by volume, and the nitric oxide had to be hooked backup to the ventilator. Nitric oxide helps the lungs absorb oxygen with a lower pressure from the ventilator. The last blood gas test shows that there is a slow steady recovery, still a long way from where Emma Grace has been and even further from where she should be.

It should come as no surprise to say that I have finally taken a leave of absence from work. Tango had offered me a dedicated route; they also offered to let me take a leave of absence. I told Dr. Raja I was leaving yesterday afternoon and would be back Monday afternoon. He asked me if I was sure I wanted to leave town, it seems that every time I leave town Emma Grace goes backwards. So after the day we have had it has been decided that daddy is here for the duration.

Christal and her family are on there way to the Jude to start the next phase of her treatment. Christal has had several surgeries and all of the radiation treatments that she can have so now she will undergo an IV chemo to try to stop the beast that keeps coming back in her little body. The whole family will be here this time as Christal starts this next phase. Please send them a note of encouragement as we know they would love to hear from you. http://christalinfo.servemp3.com

There is a little baby named Andrew from Dodge City, Ks that has been in ICU since before we started in ICU. This young family needs all of the support and prayers that everyone can give them as he has a rare genetic bone condition. The last few nights have shown how fragile all of these babies are while they are hooked up on a ventilator. www.caringbridge.org/ks/peanut

Also, please remember our little buddy, Jake, who is finishing his treatments in Shreveport at the St Jude affiliate. We sure miss them but are so happy they are able to be home with their family back under the same roof. www.caringbridge.org/la/jakeowen

Mimi Sharyn surprised Trish Sunday afternoon with a short but ever so sweet visit. She knew just what Trish needed. Most importantly, God knew exactly what we needed. She called us this evening to check on our baby girl again and also wanted to share a much needed message from Max Lucado’s, “Grace for the Moment” – one of Trish’s very favorite writers. (Hello … Trishie here, as Barney & I tag team this entry.) Sharyn said it wasn’t even today’s devotion but she knew God wanted her to share it with us. It hit home with us and it was often easy to put our names, as well as many of our family and friend’s names in place of the “you’s” as Mr. Lucado writes. The last three paragraphs are the heart hitters and it seemed long but couldn’t leave the first part out as it “hit”, too. We trust it will encourage you as well. Thank you Sweet Sharyn for sharing!!

“GOD WILL GET YOU HOME”

“What we see will last only a short time, but what we cannot see will last forever." 2 Corinthian 4:18

Max says: “For some of you, the journey has been long. Very long and stormy. In no way do I wish to minimize the difficulties that you have had to face along the way. Some of you have shouldered burdens that few of us could ever carry. You have bid farewell to life-long partners. You have been robbed of life-long dreams. You have been given bodies that can’t sustain your spirit. You have spouses who can’t tolerate your faith. You have bills that outnumber the paychecks and challenges that outweigh the strength.

And you are tired.

It’s hard for you to see the City in the midst of the storms. The desire to pull over to the side of the road and get out entices you. You want to go on, but some days the road seems so long ….

Let me encourage you … God never said that the journey would be easy, but He did say that the arrival would be worthwhile.”

(Told ya it hit home, eh?)

We love you and thank you always for your love, support and especially, prayers for Emma Grace and the many children who face their trials with the “Head-Strong, Head-On” attitude yet amazingly, smile. Isn’t God good?

Keep Looking Up,
Barney & Trish

Please also remember our many dear friends who bravely face their days with their babies perfectly healed in the presence of God.

Sunday, May 1, 2005 1:49 AM CDT

May???? Is it REALLY MAY?!?!?!?!?

Ok … so, I really do have no sense of time. I can’t say being in ICU has helped that matter either. No worry – I have this great condition of hiding my own Easter eggs and never watching reruns. My Daddy aka Poppa and I, who share this condition (I guess it’s genetic) have decided it’s not such a terrible thing after all. It is kinda fun and keeps everyone guessing … that’s for sure!

Emma Grace has had a pretty even day … Dr. Raja started our Saturday out after they finished rounds by showing Daddy and I her morning x-rays. NOTE: Upcoming LW!! Since placing her on her tummy – which we have decided she really likes – the x-ray proved to have a slightly better picture of the left lung. It was ever so slight but slight improvement on the outer edge. Oh Thank You Lord!! He knows when to send Daddy and me good news. Dr. Raja said he gets over optimistic at times but he is encouraged that by proning (turning her on her tummy) it was a good decision. He wants to give it another day and then the Team will re-evaluate Monday or maybe before. I had to laugh when Dr. Raja said that they wanted to continue with her at a “slower pace” as she has proven she wants to do things “her way”!! Ya think?!?! I know he is not just now figuring that out but he finally had to admit it. That’s our girl!!

The new vent tube that was just placed seemed to be making the “snoring sound” again. Dr. Raja decided it needed to be “adjusted” so they moved it down another 2 cms which seemed to take care of the problem.

Once Emma Grace’s Saturday goals were established and things looked steady and stable, Daddy had told me Friday night that he wanted me to try to “get out” on Saturday. What?? Really?!?!? Oh my, do you think the walls are getting close around here?!?!?!? Seriously, he really just wanted me to have some “out” time which was very sweet on his part. Thank you Barney for taking that initiative as you knew I probably wouldn’t have. My focus was going to see Nancy, Ali’s Mom, and we had a wonderful visit. Nancy, son Bobby, Janie and Janice took me to the infamous YaYa’s and it was OH MY WORD, GOOD!! As grand as the food was the fellowship was even better. We realized that in all the time we have spent together in the past 9 months, we have never spent any time outside St Jude except at Ali’s Life Celebration service. It was heartwarming and therapeutic … I actually relaxed for a change instead of staying clenched.

There are many Saturday blessings to share – first and foremost, seeing God’s mighty Hand continuing to touch our sweet Emma Grace’s left lung. One thing I know I have shared in the past (but of course, I’m going to mention again – smile!) is the fact that God has a purpose and plan for everything that happens. Not just some of the things – Everything! I told Nancy today that in the past I would mindlessly say “what a coincidence”, “by chance” or “I got lucky”. I know that NOTHING is by chance, coincidence or luck. It just doesn’t exist. God has a plan and purpose for His plans.

For many who didn’t have the honor of meeting Ali, oh boy, just wait. You’ll be able to pick her out in Heaven as I’m sure she will be the one with the bright pink mansion and matching boas. If that says something about her vibrant personality, well, you’re right but it doesn’t even begin to describe the “inner-Ali” that we only had an abbreviated glimpse of seeing. I’m never going to be able to translate what is written on my heart nor about how she took Emma Grace in to comfort, encourage and most of all, love. These two had an unspoken love for each other like I’ve never seen before and it was instantaneous. Many times they didn’t even have to speak yet they so clearly understood each other in ways we will never understand here on earth. Angel Ali often told Emma Grace she was her hero but the reality is, Ali is the true hero especially, to Emma Grace. Sadly, she had a short time to share things with Emma Grace. God may not have blessed us with quantity but He sure gave us quality Ali time. While seeing Ali’s signature designed bedroom for the first time, I noticed a small plaque on the wall. It read “Get your big girl panties on and deal with it.” So Ali and so descriptive of how she met life head on, with courageous, contagious vigor in spite of cancer. But above her headboard were two beautifully profound plaques that read “Hope” on one and “Faith” on the other. Ali divinely and definitively grasped both.

God has given Emma Grace (as well as Momma and Daddy) some very gifted and special friends to journey through this world of cancer. There have been many of the children that we all have gotten very attached to. It goes without saying that Stanton and Emma Grace shared a very striking resemblance to a 3 and 4 yr old “married couple”. They loved each other in such a deep, forever passion yet they would fuss like they had been married for years. Only to hug, make up and play again. It was always entertaining and yes, often challenging when they were at “odds”. One thing is for sure – they loved a beyond love that only God blessed them with and again, we will never beging to understand what those two shared here on earth.

I said all the above to reiterate – God has a plan. We often don't understand and it's so human to ask "why". We may not be able see down the road and thankfully, I’m glad He doesn’t share that with us. I’m not sure our hearts could take it. God knew that Emma Grace would find Stanton and Ali along her journey and He also knew they both would impact her in such a profound way that we adults would be scratching our heads in amazement and wonder.

Needless to say, Emma Grace does not know about Ali’s entrance to Heaven and I’m leaving that to God’s timing somewhere down the road. Nancy and I decided that saying “she went Home” would be appropriate and not entirely untrue. She is Home, just as Stanton is Home – where we all long to be. But for now … Emma Grace peacefully rests as her body is trying to heal. God has the plan figured out and I’m certain He will direct it in due time.

There are so many children and their families we have met that have touched us deeply in so various ways. (If I tried to list each child and their family, I would surely leave someone out … so I won’t try; besides the list continues to grow). I’m just touching on patients and families – this doesn’t begin to mention the St Jude Team member friendships or the ones with you, some whom we have never had the pleasure of meeting except via website or email. Barney and I continually to be amazed that each child, each family, each friendship brings a different facet to the journey God is leading. Thank you for following your hearts in sharing your gift of love with us and for touching and teaching us in such a humbling deepness.

We love you all and thank you again for continuing to lift Emma Grace and friends in your prayers and also as we all continue to face each day with Hope and Faith in God’s Plan.

Only By His Grace - Trish

Saturday, April 30, 2005 0:56 AM CDT

ANOTHER TWIST TO THE STORY

The doctors decided that Emma Grace has laid on her back long enough; she has been rolled from one side to the other with a lot of time on her back. The Team has placed her in a prone position; it only required six members of the team to put her on her tummy. She actually seemed to enjoy the change, her blood pressure went down, and her oxygen saturation went up. The left lung is in two sections the upper lobe lays against the chest wall with the lower lobe laying against the back. The theory is that the lung can drain and since air always goes up maybe it can do a better job trying to open the lower lobe. The doctors have had other doctors reading her C T from yesterday and they are all in agreement that it looks so much better than the last one that the doctors are saying just give her time. The doctors are not sure if the lower lobe is collapsed or if it is consolidated (from the bacteria that started this whole mess) we are going to leave her on her tummy for a couple of days and see where we go from here. Everything went smooth with the flip and until Emma Grace started snoring. Doctor Raja decided that enough was enough so he called a meeting with momma and I, the entubation tube was a 5 mm which is what is standard for a four year old. The other way to determine the correct size is to look at the little finger of the child; it seems that Emma Grace’s pinky finger is as big as Dr. Raja’s pinky finger; his comment was she is not your normal four year old little girl since she is big for her age. Needless to say at 7:30 this evening Emma Grace was rolled back to her back stabilized for a few minutes and then the tube was replaced with a 5.5 mm entubation tube. Once again Emma Grace was stabilized again and then five members of the team placed her back on her tummy. Dr. Raja feels like the small tube may be part of the missing link as it may have been leaking enough not to allow enough pressure to make its way into the lower lobe, we will watch and see over the next couple of days.

It has been a long day needless to say. Emma Grace has handled all of the extra attention very well, almost like she has really enjoyed all of the attention. One of Emma Grace’s team members gave us a book to read while we sit and wait. The title of it is “GOD IS GOOD” it is a very enlightening book. The main focus is to be able to say GOD is good all the time, not just when things go our way. It is very difficult to say GOD is good all the time, all the time GOD is good. It helps lift us up knowing that there are so many prayer warriors lifting our baby girl to Heaven. PSALMS 135:3 Praise the LORD; for the LORD is good……

Please remember Angel Ali’s momma Nancy Mills as she continues to struggle with the lose of her precious daughter. Tina called this evening and told Trish that she is going to have surgery May 9, please continue lifting these two in prayer as their worlds are still in such turmoil.

GOD IS GOOD, ALL OF THE TIME

Emma Grace’s Daddy

Friday, April 29, 2005 0:28 AM CDT

Hello to You!!

Four weeks today in ICU and counting …

Emma Grace has had a good day and we have had a couple of LW’s (little wins) today. The vent pressures have been turned down ever so slightly today as well as the paralytics and she is tolerating all the above very well. Granted, she is still out and sedate but we did see movements today that we have not seen in quite sometime. Thank you Lord, you knew Momma and Daddy needed that!! Of course, we are watching for the least little movement at this point. I know she is thinking in that little bright mind of hers, “MOMMA! BACK OFF … I can hear you and still do all my tricks but can you not see I’m trying to get a little rest and relaxation here?!?!?!” It just made our hearts jump to see voluntary muscles trying to navigate even if it is slightly. She even gave us a slight glimpse of the crystal blues … key word being ‘slight’. LW’s … Thank you Lord again for LW’s!!

Not that the days are getting easier on the 3rd floor but I believe ICU psychosis maybe is creeping in so I think I’m not as aware of the days, nights, much less the weeks spent here. (Seriously, I don’t think I can blame the ICU for psychosis as I’m certain that would be a considered a pre-existing condition).

I started reading a book that dear Donna gave me sometime back called “Am I Not Still God?” by Kathy Troccoli. I’ve always loved her as a Christian music artist but in just the first few chapters of her book make her songs have even further meaning. She is an incredible lady and has faced cancer with both her parents. In her sadness, anger, and every other emotion that accompany her (our) attempts of handling such trials, God spoke to her as she lay still in a little chapel at the hospital when her mom was diagnosed for the second time with cancer. “Am I not still God?” At first she said she wanted to run away but how could she ignore Him? She continues with the part I love … “But oh … the biggest part of me wanted to run toward Him. Run as fast as I could into the arms of the One I knew was greater than I. He was there.” … “A deep darkness. A beacon of light from Jesus. He was my hope. He IS my hope.” God did not heal her father years earlier nor did He heal her mother in her second and final bout of cancer. But He is her, our, my hope.

He certainly sees the whole picture and I thankful I don’t know how it’s supposed to go from here with our baby girl. You know, I would want to try to change it which equals messing it up. We’re kinda funny that way, human that is. All I can do is believe, trust and love Him for being our God who is way beyond awesome and is handling things well without my interference.

“For My thoughts are not your thoughts, neither are you ways My ways … As the heavens are higher than the earth, so are My ways higher than your ways and My thought than your thoughts.” Isaiah 55:8-9

Good news … Little Mr. Jake got to go home today!!! I don’t mean just out of the hospital home, I mean HOME-HOME!!! His ANC is well on its way back up and they are opting to finish his chemo in Shreveport. I have to say it was bittersweet; I am so thankful they are able to go home but we sure are going to miss them. Way to go Jake-Jake!! Feel free to drop them a congrats line at www.caringbridge.org/la/jakeowen

Sweet Cathy Layfield came to visit the Rayborn’s as well as the Hampton crew. She is such an angel … brought us a wonderful lunch and supper as well as happies for our sweet babies. She also included chocolate treats and Joel Olsteen’s book “The Best Life Now” which I can’t wait to read next. Cathy also is volunteering at our “old home”, Uncle Ronnie’s House. What a blessing she is to everyone she meets and I know that Sherri and the RMH crew are tickled to have her on their Team. Thank you Cathy for following your precious heart and blessing ours!!

We love you all more than you can ever know and thank you so much for your faithful prayers for Emma Grace and her friends as well as their families. Praying for more LW’s as the day dawns. Wrap up in His Sonshine … there’s no better Arms to brighten your day.

Only By His Grace - Trish

Wednesday, April 27, 2005 10:52 PM CDT

WITH A SIGH OF RELIEF

Since our parent room is in the middle of the hospital we have no window so we do not know if it is dark or light outside. Saying that I will tell you how our day started, we received a phone call informing us that the Team was taking Emma Grace downstairs for a high resolution CT scan. I guess since we did not go to bed until after 2:00 am it was no surprise that it was 8:30 when they called us. We jumped and ran; we actually made it in time to make the journey with Emma Grace. It was an uneventful trip down stairs no problems down or back. Last time we did a CT it took forever for the Team to get her back on the ventilator and leveled out, today she never faltered a bit as she went right back on the ventilator and never once did she get agitated. Doctor Barfield feels that that alone was a good indicator that she was doing better. The CT cleared up the picture for all of the doctors; they all are now on the same page. The CT showed only pneumonia, the other problems they thought they had seen with the scope yesterday did not show today. Thank you JESUS for carrying our baby girl thru this trying time and for allowing the doctors to figure out what is going on with Emma Grace. It all came down to a severe case of pneumonia that has settled in the lower lobe of her left lung and has made her little lung very sick. The doctors are saying it is going to just take time for her to heal, how much time; nobody knows. The way it was explained to momma and I was if you cut your finger it heals fast. If you cut your finger and it gets infected it takes forever to heal, that is where Emma Grace is at only her lung can not be washed and doctored everyday like a finger could. So know we will just continue to rely on JESUS to keep carrying our baby girl every step of the way just as HE has done all of her life.

Emma Grace has had a very calm, stable and peaceful afternoon and into the evening. She continues to rest in the arms of JESUS as HE heals her precious little body. Dr. Ray and Dr. Raja are praying for a couple of restful, uneventful nights for her before starting back on the slight moderations to her vent pressures again. Momma has found she likes Emma Grace's new, larger ICU room; she can get right to the top of her head for sweet kisses and whispers in her ears.

It is amazing for us to read the guest book and see how far around the world our baby girl is being prayed for. Momma and I have believed in the power of prayer for as long as we can remember, it really hits home in times of our worst fears. It is really a wonderful feeling knowing that when we need JESUS the most to comfort us or to carry our baby girl thru a trying time. All we have to do is ask HIM for HIS help and believe that if it is HIS will it will be done. Also knowing that so many prayer warriors are knocking on heavens throne on our behalf is a very secure feeling. We do not even begin to know or even try to know everyone that has or is praying for our baby and our family. Just rest assured that every prayer is welcomed and very much appreciated. We can never repay or say thank you to every one that has prayed for and supported us, all we are able to do is offer a prayer asking JESUS to bless and remember everyone everyday and to say thank you to those who read this web site.

Always in GOD’S PERFECT LOVE
Emma Grace’s Daddy

Wednesday, April 27, 2005 0:13 AM CDT

WHERE DO WE GO FROM HERE?

Emma Grace has been holding steady today. Today makes two days of holding steady, not gaining ground and not loosing ground just staying in one spot. The doctors felt that it was time to proceed a little more. The doctors called in another doctor from Le Bonheur Children’s Hospital to scope Emma Grace’s left lung again. The lower lobe on the left lung is still giving everyone fits, so scope it they did. Now the doctors are even more confused. The are not sure what it is the scope showed them, it could be one of several things so the doctors have decided to do either an MRI or a CT scan tomorrow. Doctor Ray wants to let the radiologist decide which one will give them the clearest picture before proceeding. We know it will be one or the other but until tomorrow we will not be sure which one. Doctor Ray said that they may go ahead and do a biopsy of the lung as well. We are praying that the LORD will show the doctors which way we go from here, and that HE continues to hold Emma Grace in the palm of HIS hand.

Please continue to lift Tate (caringbridge.org/tx/tate) up in prayer. All I know is what his momma has been posting on the web site. It sounds to me like little Tate is making awesome head way. Way to go Tate! It is truly amazing what GOD can do when we ask and believe that if it is GOD’S will it will be done.

Miss Kristy Lieck had follow up scans last week. We met Kristy when we first started here in October 2002. She is doing well, the doctors have been watching a couple of spots every since she finished treatment. The doctors have always said that they felt the spots were scar tissue and last week the spots showed that they were getting smaller. More answered prayers, thank you JESUS.

We would like to thank everyone for the continued prayers and ask that everyone pray that the doctors make the right decisions to help Emma Grace’s left lung heal. Please remember the rest of the children that are facing life threatening illnesses.

GOD IS AWESOME ALWAYS
Emma Graces Daddy

Monday, April 25, 2005 11:56 PM CDT

Newsflash: Emma Grace has been moved to a standard ICU room – since she has not been considered “step down ICU” since she was placed on the vent three weeks ago. Besides the fact that this is where she should be with all her added “accessories”, patients in ICU can only stay in the same room for 30 days then moved to another room so the rooms can be kept thoroughly clean. We are pushing 3 ½ weeks so now is a good time as any. The only downside to this move (other than the actual MOVE, whew!) is our parent room is not attached to her room. It’s actually outside the unit by the ICU waiting area. We’re still close just not with a window between us like before.

Here is the new phone number:
Emma Grace’s room – 901.495.5306
I assume that rings in our parent room as well. If I find out differently, I’ll post later.

Well now, I only THOUGHT I caught flack back in the days when I would update every week (or so)!! Ha! I only missed one day – not bad for me, eh?? I have to admit … the summons are justified and done ever so sweetly though. So in saying that, thank you for your faithful prayers, concern and patience.

Emma Grace is doing pretty well … her left lung goes back and forth of sounding good and then not so well. The Respiratory Therapy Team has been really rotating her over on each side to get the junk loose and moving. The progress she made last Friday and Saturday had been holding pretty steady until about midnite Sunday. We didn’t loose as much ground as we have in the past but the Team had to up the oxygen and the Pip pressures on the vent again. She is just having trouble keeping good air movement in the left lung. She is such a precious little fighter and as The King says baby steps are like “little wins” aka LW’s. He’s right – we’ll take all the LW’s we can get. Everything in ICU is so micromanaged and the entire Team is incredible. Can I mention again?? … They don’t call it INTENSIVE care for nothing.

We are ever thankful that God has placed us in such wonderful care from Day 1 with St. Jude. I was visiting with a new St. Jude mom last night and she could not get over how a whole Team of doctors, nurse and staff treat you as if your child is the only patient at St. Jude. I know we have mentioned that same thought many times before but even after being here for over 2 ½ yrs, we are continuously amazed that feeling is always growing. Again, our children are being treated as if they were their own. Incredible, absolutely incredible!

Barney is back with us as of this morning around 6. It is so hard on him being away with Emma Grace being on the vent. Last night is a prime example, she was having problems keeping the O2 saturations up where they need to be and it was making him quite uneasy to say the least, until I would give him another update call. He called Tango this morning to tell his dispatcher what was going on and they have been so good to work with Barney when he needs to be here with his baby girl. It goes right in line with what I have been saying all along – God placing just the right people in your path when you need them the most.

Granny Pat went back home this afternoon since Barney made it back in. It was really nice having her here with us. She keeps venturing a little further from home which is good and stayed with us almost a week this time. I hope she enjoyed her visit here but I know she was ready to head back home.

We had some very special visitors this weekend. First, The Thomas Family from Fayetteville that attends North Street Church of Christ with my Aunt Judy and Uncle Charlie. Mrs. Angie made a beautiful prayer shawl that was stitched with love as well as many prayers for our baby girl. It was so grand to visit with them. I think I gave them some “ammo” to tease Uncle Charlie with in the future. Sorry Charlie – I couldn’t resist besides I think I owe you. Thank you all for taking time out of your weekend to come meet us and be on the lookout for Dr. Ray and Laura in the Hogeye Marathon next year!

Also, two ladies from Bastrop, LA, Debbie & Vicki, came to Memphis for a meeting this week. They have been following Emma Grace, Stanton and Jake’s websites for some time. These two ladies are so very sweet and we had a great visit with them. They brought Emma Grace a basket FULL of Beanie Babies. I couldn’t help but think at first glance of sweet Ali as there was a pink flamingo on the very top. Ali had a pink flamingo just like it in her room that she loved. It was one of her first décor items in her Beach themed room in the Penthouse. I can’t wait for Emma Grace to see all the wonderful Beanie Babies. I guess I had no idea there were so many. She is going to LOVE them and especially to add to her Fetch collection. Thank you Debbie and Vicki for blessing our heart with your visit and precious happies for Emma Grace!

Since we first came to St Jude in 2002, our church back home calls us to worship with them via speakerphone. We cannot tell you what a wonderful blessing it is to “be home” with them via long distance. In Bro. Grant’s message Sunday morning, he was sharing about “Acting on Impulse” taken from Psalms 55:1-16. He spoke about the many times we make decisions without taking things to God in prayer first. (Ouch! That statement sure made my toes sore!!) It was a really good sermon. He also covered that our impulsive actions or quick decisions have far reaching affects – not only affecting us but those around us. Often it can be speaking without thinking. (Ouch again!) Now, granted we all make snap decisions that if we had the chance to do over, we would certainly choose differently. We’re so very human and we’re going to make poor choices from time to time. God knows we often jump in without thinking things through yet He’s always there with loving forgiveness. Learning, growing and depending entirely on Him continues to build the loving relationship He desires from us all. Bro. Grant’s answers to impulses were to first, call on God in prayer before we act. Also, utilize our support group. He said that if we can’t love and support each other as Christians, we need to pack it up and go to the house. But most importantly, go to the best support we have – God. He’s always there again and again.

In turning to Psalms for Sunday’s message, I ran across a note stuck in my Bible from Mimi Sharyn along with a verse she had highlighted for me. Little did I know she had left the note dated 12-15-04 while she was staying with Emma Grace and I during the transplant phase. It blessed my heart in many ways (not to mention I love finding surprises!) It may have been a surprise to me but it wasn’t to God. It’s like Mimi Sharyn said when I called her about discovering her note. “I knew you would find it when God wanted you to.” A portion of the note read, “I know God has been your strength many times through these last 2 yrs – just always remember – He’s still there to do it again and again!” I don’t have to tell you that it was EXACTLY what I needed at PRECISELY the right time. And of course, it went right along with the message Bro. Grant was getting ready to deliver. As Mimi Sharyn would say, “is it odd, or is it God?” We all know the answer and yes, He knew I needed to hear from my sweet friend plus need her encouraging support four months after her original writing. But He especially knew I would need to be reminded of the verse she highlighted. “My flesh and my heart fail, but God is the strength of my heart, and my portion forever.” Psalms 73:26 Is God not amazing??

Thank you for your continued prayers for our precious Emma Grace and her friends. Please remember Tala who is here for check up scans and also, a little boy named Christopher who is a neuroblastoma patient and had an MRI today after experiencing some pain on the right side. Christopher has been cancer free for 6 yrs. Little Jake is still in the hospital with no ANC and slight fever. BUT Praises Praises!! His AFP (tumor marker) was 67 today!!! Thank you Lord!! Please don’t forget the new family the Maxwell’s that I just met last night. They are just beginning their journey with their son, Sean and certainly needs our prayers.

Our hearts are overjoyed knowing that God sends His best to come to our side and carry our His plans. May His Sonshine surround you … we love you!

Only By His Grace – Emma Grace’s Momma

Saturday, April 23, 2005 11:22 PM CDT

Alrighty now … we are making a few more baby steps today!! I felt she had made great progress on Friday and had made up my mind that I would be happy with “stable” today. I love it when God has better plans in store. Granted, we are not running laps around ICU – yet – but we’ll take every step forward as progress but most importantly PRAISE!!

The Team has reduced Emma Grace’s vent pressures again today. Her Peep pressure is now 9 and PiP is at 32. The oxygen delivery on the vent is set at 45Her blood gases have improved as well. These are checked at least 4 times a day to monitor oxygen vs. carbon dioxide. Overall her O2 sats are staying right at 97-99 Ok, so these may sound Greek to most of us but I said all that to say this … she is making progress and we are thanking God. It’s amazing how we used to concentrate on ANC, platelets and hemoglobin which we still watch but with her last 3 weeks being focused on the pneumonia we have steadily learned to keep in tune with additional stats. I wasn't sure our feeble brains could hold any more 'learning' but I do think Gerita Moreton aka Coach Moreton would smile in amazement that I have retained a few things from 9th grade science.

Her Team has also decided to ever-so-slowly start weaning the paralytic medications. They took it down a “notch” today and will do a wee little bit again tomorrow. They want her voluntary muscles to start waking slightly but Emma Grace will still be in a subconscious state for now. The last thing anyone wants is to get too aggressive with this whole “weaning process” and have to back up. They are just letting her body adjust in small increments which she has let them know works best for her. Hey, we come from a pretty laid back neck of the woods so I think she has proved her point.

Watching Emma Grace for almost 3 weeks now in her extended sleep has been a challenge to say the least. It takes a conscience effort on Momma’s part to remain calm and patient. Lots of deep breaths and constant prayer – I just want her to wake up, get better and let’s get this step of the journey behind us. Again, I imagine that Emma Grace and God have probably already discussed this situation in great detail.

Barney and I are ever amazed at God’s love. It is overwhelming and humbling that God covers all the bases in providing for all needs sometimes before we even ask. He hears, He cares, He knows all things, He sends angels in our path at every turn – that’s God. He is love in every respect of its meaning that we can comprehend. I believe we aren’t meant to understand His love fully until see Him face to face. Thank you Lord for providing all things - strength, comfort, mercy and most of all, Your unconditional love.

Dear Stanton’s pediatrician Dr. Elizabeth & sister, Karla that you all have heard me mention several times before gave me a silver bracelet back in October that I absolutely treasure. I wear it daily and read it many times over especially when the days seem long. “Come to Me all who are weary … and I will give you rest.” Matthew 11:28. Rest my sweet baby girl. We’ve got lots of catching up to do.

We love you all more than you can ever know. Thank you for your faithful prayers for our Emma Grace and her friends. You are true gifts from God.

Only By His Grace – Emma Grace’s Momma

Friday, April 22, 2005 11:45 AM CDT

STILL HEADING UP

I remember when Emma Grace started walking and how she had to hold on to someone’s hand to keep from falling and how small a step her little baby legs took. I am so thankful that GOD is holding her hand and watching her take these small but steady steps upward. I can only imagine the smile on Emma Grace’s face as she gets to hold GOD’S hand. The doctors have been able to wean her off of the nitric oxide that she has been on for over two weeks. The team called in a kidney/blood pressure specialist yesterday to get a second opinion on what would be the best option for Emma Grace’s high blood pressure, and the high B U N. (one of the markers for kidney function) The doctor suggested stopping one blood pressure med and adding another one thru an I V drip, and wait and see with the B U N since everything else looks so good with her kidney function. Emma Graces’s blood pressure is normal again, that is a very big relief as she has had some very severe blood pressure issues. So far today they have been able to turn down the pressure on the ventilator, we just continue to pray that it will continue on the downward trend and not need to be turned back up again.

Please remember Tate Lewis (caringbridge.org/tx/tate) and his family. Tate was born without the left side of his heart, which has required several surgeries. Tate underwent his biggest surgery on Tuesday and from reading his web site every thing is going good. GOD is so awesome!!

Another little buddy and his family need all of the support that we can give them. Christopher (caringbridge.org/tx/christopher) has been placed on hospice as the doctors have done all that they can for him. Christopher has relapsed several times, finally leaving the doctors with no where else to turn. He has a very devoted mother and a very sweet sister that Emma Grace thoroughly enjoyed playing make up with. We had the pleasure of meeting both of these families when we went on our RMH/Sea World trip.

Thank you for all of the messages left in the guest book, it really helps lift us up when we read them, besides it will be in Emma Grace’s scrapbook someday.

Always Remembering All Things Are Possible Through CHRIST
Emma Grace’s Daddy

Thursday, April 21, 2005 1:24 AM CDT

Okey dokey ... the roller coaster has slowed today. Thank you Lord!!

Emma Grace has been better today - still seems to have some wheezy, junky sounds but we are praying that the next xray shows some improvement. She seems to have better airflow today which is good good good. Dr. Ray said "baby steps" in his ever wise analogy today and he's exactly correct. So baby steps it is. She is still resting so peacefully yet I want to just blair the music so she'll get up and dance ... time, just more time.

Barney made it out on his first run Tuesday, back here Wednesday afternoon and back out Wed nite. He was sure glad to get back to his baby girl and she responded in her quiet way of a slightly elevated blood pressure to say "Hi Daddy ... I love you too!"

Thank you so much for your faithful prayers for Emma Grace and her sweet friends. You all are the BOMBDIGGITY!! and we love you so!! Ali's Mom, Nancy, said she is amazed at the many notes of love left on Ali's website from you all.

PRAISES PRAISES PRAISES:

Little Jake's AFP, tumor marker, is LOW LOW LOW!!! Thank you Lord!!! YEE HAW!!! www.caringbridge.org/la/jakeowen

Jazminie Davis is growing T-cells!! Things are finally getting closer to home for this precious little girl!! Again, THANK YOU LORD!! www.caringbridge.org/il/jazmine

Brent Nason is out of the hospital since his stem cell transplant and he is looking great. www.caringbridge.org/ms/brentnason

My brother Chuck and sis in law, Kellye, the "NEWLYWEDS" are headed home from their Vegas wedding tomorrow. Congrats Chuck & Kellye!! Can't wait to see the new Mr. & Mrs. Thurman!!

Have a blessed day surrounded by His Sonshine!

Only By His Grace - Trish

Wednesday, April 20, 2005 1:57 AM CDT

Well now, they don't call it "intensive" care for nothing now do they??

Tuesday has been one of those roller coaster days with our sweet little Emma Grace. Even though the ICU Team has been reducing the vent pressures SLOOOOOOOOOOWLY over the last few days, Tuesday we took 3 steps forward and 5 back. Her early morn xray showed the lungs to be junky again so back up the pressures go on the vent and as of midnite they have been able to ever so slowly baby step them down. The encouraging note is that she is responding well to the adjustments of medicines as well as the vent changes and seems to slowly get turned around back in the right direction. Also, her blood gases - oxygen and carbon dioxide - looked really good about 11 pm. So exhausting yes but also thankful God has turned the late afternoon and evening hours to a much needed calm ... we are looking forward to God giving everyone a restful nite. Especially, our precious baby girl.

Are you dizzy yet?? I almost feel guilty even mentioning the early morn thru afternoon events as I don't wish to alarm anyone. We are so very thankful that God has calmed the waters of today and I'm leaving any "storms that may be brewing" in His hands as well. My prayer is that the storm clouds are clearing because I'm looking at the Sonshine. Today is all we have and it truly is one day at a time. As Tuesday proved, sometimes hour by hour. There is no doubt ... His arms are loving and mighty as He carries all of us thru our trials no matter how great or small.

Barney left early Tuesday morning and I know it was an extremely difficult day for him just even driving out the Jude gates. Dr. Ray has visited with both of us this evening and bless his heart, he gets as frustrated as we do that Emma Grace isn't recovering as quick as we would like. But she is making progress and he keeps reminding Barney and I of that. It just plain ole STINKS seeing her so idle for yet another day. I'm so thankful for still being in the step down ICU room (not that we're considered 'step down' any longer). Her room has the attached parent room like we had on the 2nd and 4th floors. It has made it really wonderful for Barney & I to be able to get out of her room but still able to look thru the window at her to keep an eye on what's going on and who's in with her. For those of you who have spent time in ICU rooms know as much as you try not to, you FOCUS on the monitors and jump with every beep or alarm that routinely sound. So, especially for the sake of my sanity has been (no laughter for those who know me well) being able to escape to the parent room right around the corner. I know when she is awake before too long she is going to need me more than ever.

I pray that when Emma Grace awakes her concept of time and awareness of how sick she is of no recollection. We continue to kiss and caress, talk, encourage, say our prayers with her, read books, turn on favorite cartoons and of course, play her favorite CD's. The nurses and some of her Docs have joined in the fun of singing with us and even a wiggling dance or two with the upbeat tunes. We just try to keep a fun yet soothing atmosphere for her.

Bright and early Tuesday here came a breath of Sonshine - sweet Nancy, Ali's mom. I can't begin to tell you how touching it is that she is here. I know that God has blessed her with an extra helping or two of grace, strength and comfort. I just don't know that I could be so strong. In efforts of trying to talk her out of coming, she quickly told me it was bittersweet as this is where she left her baby girl and she knows that Ali would want nothing more than her coming to check on Emma Grace. Ali and Emma Grace had and unspoken language that only they understood. Needless to say, we are very thankful to have Nancy with us. She truly is an amazing woman.

It was so good to see Chasity, Jody, Miss Lauren & Madelyn Grace Collins today. Miss Lauren is also a neuroblastoma patient that is doing really well back for check ups. Both girls have grown so much and just precious!! It sure was nice to visit with them for awhile and we pray all is well with her check up scans. Feel free to stop by and say hello to them. www.caringbridge.org/va/lauren

We had more special visitors Tuesday evening from Louisianna - sweet Karla Loftin and family. They are on spring break and headed ?? on vacation. Last I knew it was Branson but you never know with Karla, she may have talked Gary into the east coast by morning! ha! Karla made it clear their first stop needed to be checking on Emma Grace and of course, bringing her more FEATHERS!!! They are so sweet!! Talk about three little darling girls looking just like their mother. Do they make #53 eyelashes in junior sizes?!?!? Of course, Karla had to leave fushia lipstick on my baby girl's forehead.

Ok ... I've run out of steam so I need to close for now. We love you all and can never thank you enough for just being there. God knows what we need ... all the time, every time.

Thank you for your faithful prayers for Emma Grace as she continues to be such a tough little darling. We know that God is in full control and still holding our baby ever close to His heart. Please continue to remember all our St Jude families and their strength to continue today and today only ... minute by minute, hour by hour, looking up for Him to lead the way.

Only By His Grace - Emma Grace's Momma

"Lord, show us the Father. That is all we need" John 14:8

Monday, April 18, 2005 9:32 PM CDT

AS GOOD AS CAN BE

First and foremost let us just say that Emma Grace is doing great considering we are starting week three on a ventilator. The doctors finally figured out that they are going to have to wean the vent very slowly. When they got aggressive trying to wean the vent she would flip flop and start backwards, the doctors have decided to let Emma Grace let them know when she wants to be weaned some more. The doctors are figuring at least two more weeks on the vent, possibly three. We will just do what GOD wants us to do.

Miss Nancy was here today delivering goodies and her wonderful since of humor. Everyone concerned was not sure how Miss Nancy would handle being back at the Jude so soon. I must say she did a very good job, she had a mission to do and she handled it rather well. Think you Miss Nancy for being here for my girls all these past months of transplant. I would like to thank you in advance for being here will I am at work.

I called the company I drive for this morning and ask them if it was possible for them to run me from Memphis to Shreveport and back to the Memphis area. I told them I could handle being five or six hours out, and they have been very willing to work with me on this issue. I leave early in the morning so I can deliver in Shreveport at one o’clock tomorrow afternoon. Granny Pat is coming in Wednesday, with the plan to stay as long as we need her. She is going to help cover afternoons and evenings and Miss Nancy is going to help out of a morning when I am out of town.

We would like to thank everyone for all of the words of encouragement that have been left in the guest book, we would also like to thank everyone for all of the prayers that have been sent to GODS throne on Emma Grace’s behalf. We all know that all things are possible with GOD if we will only ask. Please continue to remember our Emma Grace and her many St Jude friends as well as all her little friends fighting physical battles. Also, please especially lift our sweet families whose angels have gone Home.

Constantly Asking
Emma Graces Daddy

PS We have added Angel Ali's website to the above that her school set up in her honor. We know they would love to hear from you.

Sunday, April 17, 2005 9:50 AM CDT

Hey Crew!

Just a note to say a few things ... (more details later)

First and foremost, Emma Grace is holding steady. Her left lung is still pretty junky but her blood gases are much better. The Team has decided SLOW vent weaning is our best option with her. They have attempted to wean more aggressively but Emma Grace has proven she is alittle like Frank Sinatra - she wants to do it HER WAY!! (big surprise) ha! They definitely have that and the blue eyes in common. She is resting so peacefully and comfortable. I just envision her resting with her little head close to God's heart wrapped in His loving arms.

Secondly, Ali's Life Celebration service was yesterday morning and was absolutely incredible. My heart is still overwhelmed and overflowing so please bear with me while I soak it all in and I will try to give my perspective on it when I update later.

In closing, we have been blessed to have Barrett, Gwen, Brandi and Dalton Curtsinger with us this weekend. We've had a good time visiting ... I think they've missed us as much as we've missed them. We miss everyone and look so forward to having this roadbump behind us. God and Emma Grace are having this conversation and have it all worked out.

Larron & Anita King of the Lauren King Ministries came by last night and it was so good to fellowship with them. We miss getting to be in the worship services with them at RMH and we are so thankful they came to have prayer service with us. They are so precious and continue to let God's light shine no matter what may stand in their way. Please pray for their ministries as they share God's word and continue to carry His flame. Thank you Larron and Anita for your love and friendship! You all mean the world to us and we are so thankful God has allowed our paths to cross.

So now everyone knows that all is well at the Hampton House aka ICU at the Jude. Barney and I realized that we had let two days slip past without updating. Sorry to keep you hanging. Keep this in mind ... no news is good news or in our case "same news". Same is good.

We love you all and can not find the words to convey our heartfelt appreciation for your love, support, encouraging messages and most of all, your prayers.

Only by His Grace - So blessed to be Emma Grace's Momma

Prayer Requests:

Tate Lewis is having his HUGE heart surgery this week. I believe it is on Tuesday. Please lift this sweet little man in prayer. This precious family is one we met on our RMH / San Antonio trip in Oct. I know they would love to hear from you if you get a chance. www.caringbridge.org/tx/tate

Also, please remember the Mills Family as they adjust their world with Sweet Angel Ali in Heaven. Several have asked so I have included their address if you would like to drop them a card. Bob & Nancy Mills, 8581 The Island, Memphis, TN 38125

Thursday, April 14, 2005 11:33 PM CDT

What a LONNNNNNNNNNNG day!! … but we’re praying its improving!!!

Today marks Emma Grace’s 14th day in ICU and 11 days on the vent (not that we’re counting or anything!!). Needless to say, this has been a long day and obviously, a tough week.

Emma Grace had a remarkable day yesterday … today was not quite as well. First, her chest x-ray did not look as good as it had. The left lung pretty junky just as it was last Saturday. Second, her blood gases were kinda stinky – oxygen down and Co2 up. So, to top the whole morning off the Team had to increase the vent pressure, oxygen level and once again put her back on the paralytics. UGH!!! It’s almost like we take 3 steps forward and 2 back. ALRIGHTY THEN … oh, and this was all before 11 am.

It is very disheartening to see our baby go back into her “dream world” and take those baby blues with her. It was such a blessing getting to have even the slightest of communications with her yesterday. The good news is that she is resting comfortably and we all know how she loves the “woozy” feeling. (I’ve said it once, I’ll say it again … Betty Ford Clinic here we come!) We had so hoped she would be progressing to being more awake but her body obviously needs to rest some more.

With Emma Grace’s condition not progressing as it should by this time and with the morning diagnostics, the Team decided to try some other medications to try to loosen the gunk in her lung and hopefully, avoid more steroids. The Team called in a pulmonary specialist from LeBonheur to do a bronchiostomy (bear with me on the spelling) – look into the lung with a scope, suction and flush to loosen mucus and get a sample for biopsy of possible bacteria other than what we know is there. This procedure was completed around 6 pm. The doctor felt the procedure went very well and that she should hopefully get some much needed air movement in the left lung. She was evidentially pretty full with gunk on the left side. Now, we just pray and wait. Who has it all worked out?? Yes, He does.

If you think by reading this day by day it’s a bit upsy / downsy, well, you’re right. Dr. Ray reminded us that things can change daily where the lungs have been so ill. In trying to eliminate the “gunk” it is just taking time and it will wax and wane from time to time. It’s just part of the process in treating her problems. Ok, so they are still tweaking, adjusting and managing Emma Grace’s changes as they present. Our anxieties are obvious – we want her better and closer to getting off the ventilator. Thank you, Dr. Ray for showing up when Daddy and I need you most. You’re really perceptive in knowing when to appear. What a blessing you and the Team are!!

Please pray for Miss Christal, Momma Chris and family as they had their MRI today. Not the news we were hoping for as she has tumor growth even while on the chemo. I know it isn’t nice to say we hate something but I really REALLY hate cancer. It is like Chris said this afternoon, our babies did nothing and yet they are faced with such overwhelming obstacles. Her Team is evaluating different studies open to see what may be the best approach. Our prayer is that God wraps this family up and leads the way. Only He knows what’s ahead. Especially, remember Chris as she follows God’s lead and makes the best possible decisions for sweet Christal.

Also, please remember Angel Ali’s family. I have listed her service information in the header above. Nancy requests that in lieu of flowers that memorial be made to St Jude in Ali’s honor.

We had several very special visitors today and you can't know how you have made our hearts smile. It is ever amazing we somehow to let our chins drop when things aren't going so smooth. God is so good to lift our eyes back to Him and sends His messengers to remind us we are never alone. You all are such blessings!!

Thank you so much for your love, friendship and especially, your prayers for Emma Grace and her friends. We know God is still on the Throne and has all the finest of details worked out – we’ve just got to trust and hang onto His mighty hand. We love you bunches!

Only By His Grace – Emma Grace’s Momma

WEDDING BLISS WISHES TO MY BROTHER CHUCK AND KELLYE!!! They will be officially Mr. & Mrs. Charles W. Thurman at 7 pm CST on Friday, April 15th. We’ll be watching from St Jude via webcam LIVE from Viva Las Vegas Wedding Chapel – ain’t technology grand?!?! Congrats Kiddos!! We love ya!!

Wednesday, April 13, 2005 6:11 PM CDT

What A Wonderful Day

It truly is a wonderful day in ICU, the doctors stopped the paralytics that had Emma Grace unable to move or even open her eyes. It took her about thirty minutes to wake up once the medicine stopped, and once she did those eyes have been opening and her head is nodding yes or shaking no. She may not be hollering or screaming at us yet but she sure can let us know that she hears us and sees us. It is a very awesome sight to see those baby blues twinkling at us. The nursing team is going to do labs checking her blood gases, her blood gases will be checked every six hours, and from these the doctors will decide when and how fast to wean the ventilator. Thank you LORD for carrying our baby girl as well as her momma and I thru this trying time, we know we would not be able to do this without you.

We have had the joy of seeing Bailey and her momma Kellie from Florida, Bailey is here doing follow up scans for her treatment. She is a sweet young lady that was diagnosed with A.L.L. when we were here in 2003. She is on a two and a half year protocol with her last chemo in September. Our friends Chris and Christal will be here later this evening. Christal is doing checkups for her treatment as they are doing Christal’s chemo at home. Jennifer and Anna were here the first part of the week doing follow up as well. Anna finished treatment roughly two years ago and she is doing great.

Please remember Ali’s family and friends as they face the uncertainty of life without Ali. Miss Ali is going too be missed by many and I know from my own heart that there is going to be big empty spot that only GOD and time will heal. Miss Ali fought a fight for eight years that no child should ever have to face but she did and she did it her way. Miss Nancy ask Saturday night when I was with Ali what stood out to me that Ali had done, I told Ali I was proud of the way she fought and never gave up and that she did it her way. I will always remember how she had a way of doing everything her way. MISS ALI WE LOVE YOU.

I am thankful for the day the LORD has given me today, and so look forward to the day that JESUS returns and takes HIS children home. No more sickness, no more suffering, no more death, and no more heartache, oh how marvelous that will be. If you are uncertain about your relationship with GOD find a friend, or a minister, preacher, priest, or someone you feel comfortable talking with and do what ever you need to do.

Thank you for all of the prayers and pleas to GOD on behalf of Emma Grace and all of the little ones here at St Jude.

Looking Forward To HIS Return
Emma Grace’s Daddy

Tuesday, April 12, 2005 6:11 PM CDT

10:30 p.m.

It is with much pain that I type this update. Angel Ali is now watching over our Emma Grace. Ali had the same type of transplant that Emma Grace has had, as a matter of fact Ali was the first one to have this type of transplant. Ali had her transplant one week before Emma Grace had hers. Ali had severe complications from GVHD (Graft Versus Host Disease) which she could not over come. Ali we will all miss you sweet heart but we all know you are smiling that pretty smile for all eternity. We LOVE YOU baby girl

Little Steps Are Good

We have been in the hospital twelve days now and Emma Grace has continued with her slow steady progress. The doctors were able to turn the ventilator pressure down this morning. Doctor Ray told us that Emma Grace’s oxygen levels in her blood gases are higher today than it has been. Her chest x-ray looks good but still has a bunch of junk in the lower lobe on the left side. The doctors want to wait until her left lung has healed a little more before they stop the paralytics which will let her wake up somewhat. She will still be sedated enough that she will not be able to move, she will be able to nod or shake her head and blink her eyes. That will be a welcome change; momma laughs and says that Emma Grace is very unsociable lately.

Please continue lifting Miss Ali and her family in prayer. Ali has a fourteen year old brother, plus her mom and dad. Ali also has a very close group of friends. They all are going to miss her but they all know that she is going to be in a much better place and that Miss Ali will be healed. The ultimate healing is what we are all looking forward to someday. What really stinks is that Miss Ali has beaten the cancer, just like Emma Grace she is cancer free.

Thank all of you for stopping by and signing the guest book. For those of you who have left messages for Miss Ali and her family we are more than happy to play messenger and let them know other people are keeping them in mind and praying for them.

ALWAYS IN HIS SONSHINE
Emma GRACE’S Daddy

Monday, April 11, 2005 1:18 PM CDT

ALL IS GOOD

I have no excuse for not updating last night, all I can say is it felt good to go to sleep before 2 or 3 am. Emma Grace has had a really uneventful day yesterday. She is still not able to wake up or move because of the meds she is on. The doctors were able to turn the ventilator pressure down a little bit. It has been an up and down see saw battle with the pressures. Down 1 up 2, down 2 up 1, just back and forth. The doctors say this is normal, and as her lung heals, the pressure will come down faster. The doctors have opted to wait until tomorrow to stop the paralytics (the meds that keep Emma Grace from moving and being awake.) We will have to see how well she can tolerate just being sedated.

Trish’s nephews and families left yesterday after a great visit. They were hardly out of town and Trish & I were visiting in Emma Grace’s room. It was a welcome surprise yesterday when we looked up and Trish’s Aunt Judy and Uncle Charlie were standing out side the door. As we went out the door we found Nana and Bubba standing around the corner. I guess it was pay back time for all of the times we have slipped home and never told them till we just showed up. It was sure good to see them here. As we were visiting with them the front desk called and we had more company, my oldest brother George and his wife Linda had also snuck in to see us. It was so nice to see everyone. I know from experience that it makes for a long day when you round trip it from home to Memphis and back home all in the same day. Thank you everyone for coming to see Emma Grace and spend a little time with us.

Miss Ali is getting so tired, she has been fighting neuroblastoma since she was five years old, she is now thirteen. The doctors have said it will not be long before Miss Ali earns her angel wings. I wish I could give you a web site but Miss Ali does not have one, if we need to we will act as messenger. We would like to thank everyone for continuing to lift our baby girl and all of her St Jude siblings in prayer. I know we always say thank you for all that you do for Emma Grace and all of her St Jude friends. We do not say this lightly, it really does come from the bottom of our hearts. We know that without prayer and belief in GOD it would be a very miserable life that we live.

There are several of our friends coming in this week for scans and follow up care. Christal and Chris will be here Wed evening as she is having scans Thursday and Friday. Please pray they receive good news the recent chemo has been working well. Please say extra prayers for these families as they are only one bad scan away from being right back in the fight. Trish just asked me to be sure and mention Flora Baldwin, she is a friend from home. She has had brain surgery years back. She was flown by life flight to Little Rock where it was discovered she has two aneurisms that are requiring immediate surgery. Please lift this family up to the throne as you say your prayers for our St Jude family.

Fully relying on GOD
Emma Grace’s Daddy

Sunday, April 10, 2005 1:26 AM CDT

Well, of course it’s the early morning hours of Sunday and all is going pretty well. Another day … just one day at a time.

Emma Grace has had a fairly stable day. The Team tried to decrease the vent pressure which seemed to work for awhile but then her O2 sats started to drop slightly and they increased the pressure again to keep that left lung open good. She seems to be very comfortable as long as we don’t over stimulate her. Needless to say, it is very difficult for Daddy and I to be in the room and not be able to talk or touch her much. But we do what we have to do for our baby girl.

Today has been quite an emotional day as we saw many of our St Jude family that was here for Day of Remembrance. I have the greatest of admiration and respect for the families who chose to come and I certainly understand the families that just could not make the trip. Barney and I were looking out of our 3rd floor windows to see the balloon release for over 70 families that were present today. It was absolutely breathtaking.

We have been blessed to have my nephews & wives and two of my four great-nephews – Jimmy, Shelbi, Hayden & Harrison and Joey, Kristen and baby-on-the-way. They drove over 7 hrs to be with us this evening and we had a wonderful visit. They will be back later today before making the long haul back to Owasso, OK.

Please keep our sweet Ali in your prayers. It seems that her condition became worse this evening. Talk about a little lady who has fought a very long fight with neuroblastoma and fight is her middle name. She is so very courageous and is getting just plain ole tired of the fight. Our hearts break for them and wish there was more we could do … all we can do is pray and continue to be here for them. I can’t tell you how many trips have been made between me and Barney to the 4th floor in the past two days. All I know is there is a worn path. Also, please remember Ali’s family and friends who continue to be by her side.

We love you all and thank you so much for your continued prayers for Emma Grace and her friends. Also, please remember the many families traveling back home after their emotional weekend in honor of their St Jude Angels. We thank God for your faithful love and prayers.

Only By His Grace – Emma Grace’s Momma

Friday, April 8, 2005 11:34 PM CDT

A MUCH NEEDED GOOD DAY

Do you remember the story in the bible about JESUS and HIS disciples on the sea in a fishing boat during a storm? If you remember you know that the water was rough and tossing their boat around. When the disciples woke up they were scared, with only HIS voice he spoke the storm and rough water calm. Today is one of those kinds of days for Emma Grace and her mommy and daddy. When we were in the midst of our storm yesterday and scarred to our wits end JESUS calmly said “Peace Be Still.” From that moment on things have been flowing very smooth. Emma Grace has had a very good day today, she has had a little trouble with her blood pressure being a little high but other than that it has been a very low keyed day. She is still on 100 percent respiratory support, but they have been able to slowly turn down the pressures. I should say that the day started with Dr. Raja coming into the room and without even as much as a hello or good morning he asks Momma if she wanted to see some x-rays. Of course with all of the prayers being sent to the throne you know what the x-rays showed, MAJOR IMPROVEMENT. We were able to see the top of her left lung and a major portion of her right lung, thank you JESUS!!!!! The doctors were very pleased with the improvement. Her kidneys are stronger today so the doctors were able to go up on her meds to get rid of the extra fluids. Small baby steps in the right direction.

It breaks my heart to have to write what I am about to write but it must be put before the greatest prayer warriors. It is with heavy heart that I must relay that Nancy received the news that no mother should ever have to endure. Ali’s teams of doctors have reached the end of treatment options for her. They are going to start comfort meds only. I have not been able to make myself go to the fourth floor but Trish has been there several times today. I ask that everyone stop right here and say a prayer for this sweet girl and her family.

We have had some very special company today. Some of the families that have returned to St Jude for A DAY OF REMEMBERANCE this weekend have come by to see Emma Grace and momma and daddy. It is so very hard on these precious families to come back here and walk these halls again without their loved ones running before them. Please remember all of the St Jude families that have had to endure the pain of loosing a loved one.

ALWAYS LOOKING UP
Emma Grace’s Daddy

Thursday, April 7, 2005 11:21 PM CDT

WHAT LITTLE DID I KNOW

Let me just say that when I said What A Ride I had no idea what I was talking about. The last twenty hours have been a little intense. Last night Emma Graces’s oxygen stats started down. The doctors and nurses fought it for a while before opting for a dose of muscle relaxers, once they took effect everything leveled out for about four hours. As the muscle relaxers wore off we started down hill again. Emma Grace was scheduled for a C T scan this morning as a precautionary measure. The doctors wanted to make sure that there were no surprises hidden in her lungs. Since she was having trouble keeping her O2 stats up they moved her C T up. The good news is, they found what they had been treating her for, inflammation and edema, as well as the pneumonia. (Sorry for the spelling) The doctors have decided that with everything that was going on last night and this morning it would be in Emma Grace’s best interest to take back over control of her breathing. That being said, Emma Grace is on 100 percent respiratory support. She is in a drug induced coma, just like she was Monday. The doctors have been watching her kidney function since Sunday night as well. When the toxin went thru her body Sunday night her kidneys went into septic shock and tried to shut down. They have been slowly working their way back up to speed. The doctors feel that they are working well enough to handle the pressure now so the team has turned up the meds to get rid of the excess fluid. Dr. Raja stated that we are on an hour by hour status. That was around 10:00 am, and she has snoozed along on a smooth ride finally. Dr. Raja turned down the pressure a little bit this evening and she has handled it with flying colors.

Let me say this to clear up rumors and help put people at ease, 1- Emma Grace is on a ventilator and does not have a trach. 2- She was placed in a coma by her medical team. She did not go into a coma without the help of medicine.

Fetch is watching over his little buddy. Fetch was lost in Minden, La. for awhile. Miss Tina felt so bad that she went on line and found Emma Grace another Fetch. The day we received Fetch 2 in the mail Tina called to tell us that Hayden had found Fetch 1. The next time I went thru Minden Fetch 1 jumped in my truck and rode home to his special little girl. Needless to say Fetch 2 has been sitting on a shelf looking down on Emma Grace. Fetch 1 has been snuggled up with her in bed looking out for his special buddy. Little did Miss Emily at Dr. Turner’s office know how special this little stuffed puppy would become! Thank you Miss Emily.

As you say prayers for the children of St Jude please remember those that have lost their children. This weekend is what St Jude calls A Day of Remembrance here at the hospital. There are several families that we personally know that will be taking part in this solemn event, so please say an extra prayer for all of these families.

Please remember Ali, Jake, Brent, and all of the special children and their families of St Jude when you say your prayers. When I have days like I had today it makes my motto that much more special. (HIS WILL, HIS TIME, AND HIS PLACE, AND GOD NEVER PROMISED ME A PERFECT LIFE JUST HIS PERFECT LOVE) Days like today really drive this home.

Surrounded In HIS PERFECT LOVE
Emma Graces Daddy

Thursday, April 7, 2005 1:12 AM CDT

Well, I believe Daddy said a couple of nights ago “What A Ride” and that certainly describes the day.

Emma Grace has chest x-rays every morning to see how her lungs are looking. It seems the left lung is pretty cloudy all over yet the right one is quite a bit less. Dr. Raja and Dr. Rupert are concerned why there is such a big difference. They have ordered a CT scan and ultrasound for Thursday morning to see what is going on.

Dr. Raja has been monitoring her close this evening and adjusted her vent where she does not have to breathe over the machine since the right lung is the one doing all the work. He increased her oxygen and gave her a muscle relaxer so she could rest.

Ok … I was right about the “ride”, eh? I know that God has this all worked out and I pray she is close to “rounding the corner” to getting better. We are reminded that she has been a very sick little girl and it’s going to take a while to get over this nasty pneumonia.

Please pray the CT and ultrasound go well in the morning and the Team of Doctors get the answers they need to address her condition.

We love you all and thank you again so much for your many faithful prayers on Emma Grace’s behalf as well as her friends. PRAISE! Jake’s fever broke & got out of the hospital today and is back to his Make-A-Wish fun at Disneyworld.

Sorry for the short note but it has been a long day. But we’ve got to keep Looking Up! He’s right there.

Only By His Grace – Momma Trish

Tuesday, April 5, 2005 11:42 PM CDT

God is Great … God is Good!

When Emma Grace talks again she will tell you the rest of the prayer “wlet us thank Him for our food”. And yes, that is just one of the many things we are thankful for today. Emma Grace had a procedure this morning to place an NJ tube which is a feeding tube thru her nose. It actually goes past her stomach to directly provide nutrition into the intestines and keeps her digestive tract functioning. She also has an NG tube, also in the nose, which is utilized giving certain meds and removing any gastric residual. So, she is now getting her nutrition aka “Macaroni & Cheez” (really, it’s PediaSure). Tomorrow we may call it corndogs – another Emma Grace favorite.

She is opening her eyes quite a bit since last night, nods her head to let us know her “yes’s” and scowls for the “no’s”. She is still quite sedated but the paralytic meds have been cut off and it’s so nice to have even the slightest communications with her. To top it all off … to see those precious blue eyes. You know, sometimes you just have to say “I love you” with your eyes when vocal words aren’t available. And that dear ones is how I got to start my day. Music to Momma’s heart!

She also received a new, super deluxe air bed which gives her full comfort and support. It's quite fancy with many functions and actually slightly rotates her at timed intervals from side to side to help keep her from getting sore. That was quite a feat all its own considering all of the little Princess’s “accessories”. It took 7 people in the room to get everything lined out – organize all her tubing, cables, etx. Four of the nurses lifted her ever so gently while the other 3 rolled the old bed out and the new bed in. It was quite the orchestrated event. Barney & I were ever so glad that they were in charge because we knew that wasn’t anything we could have done. The ICU Team is absolutely incredible. Did we expect anything less?? Why, no … this is St Jude and that’s what they’re all about. Taking the best of care of our babies.

One more present for the day is a cool new pair of ortho boots that provide protection for her heels as well as prevent her feet from dropping which is something that can happen very quickly. Emma Grace loves them – they have plush fleece, they’re warm and plus her heroine Ali has a pair just like them. Nancy has been keeping the path hot from the Penthouse to the ICU as Ali requires her to check in on her Emma Grace periodically. Bless her sweet heart, she wants to see Emma Grace so terribly but we aren’t sure if that’s such a good idea right now. Nancy is such a great support and very has great insight on what to expect, what we need and what to ask about. I told Ali today that Emma Grace had the same NJ & NG tubes just like her as well as the same bed and boots. Nancy put it best that we could call today “Beds, Boots and Beyond”. She’s a hoot and gives us the timely comic relief to keep things semi sane during what seems a bit dizzying at times.

In spite of her bizzy schedule today, Emma Grace has done very well. She has continued to hold pretty stable. The blood pressure issues are now on the higher side so they started some of her hypertensive meds again. This is a much better problem to have than low blood pressure. They increase her diuretic to help her kidneys out some as her output slowed some earlier today. As of tonight she has improved with both those issues.

Whew!! That’s all really great stuff, eh?? Praise the Lord! I love it when He delivers “great stuff”!!

OK … now, thank you, Thank You, THANK YOU so very much for all the wonderful messages, calls, love, support and prayers! You all are such a blessing to us and our hearts are ever thankful God sends you. Aren’t we glad that God isn’t one who requires us to leave a message at the beep?? It is mind boggling that He is ever present – listening to each and every prayer, touching lives, healing bodies, saving the lost, wiping our tears, mending broken hearts, holding us up when we find our strength has gone, sending His angels to our sides when we need them most and the list goes on and on. He takes our trials, big and small, on His shoulders when we totally give Him our worries. Our worries, our sadness, our joys are His. He loves us that much. And why can I not “get my head around it” to understand? I’m obviously not supposed to understand the hows and whys. I know that I know that I know that God is God - He’s truly awesome and literally has the whole world in the palm of His Hands. Is it not amazing with His Hands so busy and so full, He always has room for more. And that’s where my baby girl rests tonight; in His loving, healing arms. Wow …

We were so thankful to have some of our family come in yesterday. Thank you Mom, Aunt Judy, Granny Pat, Bro-in-law Marvin and Cuzzin Ernie for being with us. Emma Grace is certainly aware of your being with us and I know she is thankful as well. I know it is hard to see her in such an incapacitated situation but it’s only temporary. We are so thankful that she is able to rest and heal now. Her being comfortable makes all the temporary attachments much more tolerable. Everyone went back home this afternoon except for Granny Pat who will be with us for awhile. She seems to be doing pretty well since the accident and we are glad to have her with us this week.

FYI for those of you who may not know my baby brother, Chuck (he’s going to frown at me for calling him 'baby brother' – but at least I didn’t call him “Chuckie Tater”) is getting married next week to Miss Kellye Beavers. They are flying to Vegas and getting married April 15th. Mom, Aunt Judy, Eli (who is SO excited) and Kellye’s parents are going to be with them for the grand event. As much as I would love to be there, that is just not possible – hello, especially now. But even prior to Emma Grace’s hospitalization we were not planning to attend due to her being so close out of transplant. Our consolation is that we will get to observe via internet thru the webcam at the Viva Las Vegas Wedding Chapel. Chuck & Kellye – I’m happy for you, love you both bunches and wish you many, many happy years together. (ps Chuck – good goin’! I’m proud of you for waiting but you had us worried if you’d EVER pop the question!! Luv ya)

Thank you for your continued prayers for Emma Grace and her many friends. Please remember Jake Raborn who is in the hospital in Orlando with a fever – while he’s on his Make-A-Wish no less. UGH! Pray for the fever to break quickly so he can blast out of there soon. www.caringbridge.org/la/jakeowen

Also, please remember a sweet family, The Family of Wendy Rayburn. She passed away on Saturday evening. Ms. Wendy was our Transplant Coordinator in 2003 that we became very attached to. You may remember she had cancer for several years and continued her work at St Jude until this past Nov. What a remarkable lady to continue her mission and convictions at St Jude no matter how badly she may have felt. Emma Grace, as well as many, many others adored Wendy and her family and she certainly will be dearly missed by all.

We love you and again, thank you so much for your precious love!

Only By His Grace – Momma Trish

“Be still, and know that I am God...” Psalms 46:10

Tuesday, April 5, 2005 3:10 AM CDT

WHAT A RIDE

Where do I even begin? Emma Grace has had a great day considering where she started at this Monday morning at 12:30. One of the bacteria she has is known for releasing toxin into the blood stream as the antibiotics kill it off. Dr. Ed felt that this could happen therefore he opted for the step down unit. It took a little longer than anybody thought it would take, Dr. Ed felt like if it happened it would happen within 24 hours. It just took a couple of days longer then expected. The good news is that the blood culture from this afternoon is negative for bacteria. Dr. Barfield said that is great but that we still have the bacteria in the tissue of her body. Now we just watch and wait for her little body to heal before taking her off the ventilator. She is still on a high pressure that has to be reduced within the next 36 hours to maintenance level where the powers to be feel like she will remain for 7 to 10 days allowing her body to heal without having to fight to breath.

I would like to say a big thank you to all the Drs. and nurses for taking such wonderful care of our baby girl. I would like to thank Miss Donna, Laura, and Miss Nancy for being here. I know people always say if you need anything any time day or night just let us know. Well last night I stepped out on a limb and called Miss Donna as soon as Trish called me and gave me the news no daddy ever wants to here, especially when he is out of town. Miss Donna never hesitated she got up at 12:48 am and came running to help. Miss Laura I can not even begin to say thank you enough. You are awesome. Miss Nancy you are the greatest you have a full load with our Ali girl on transplant floor and you came running. I am probably leaving some names out and for those I would like to say thank you as well.

I would also like to thank all of the prayer warriors for bombarding heavens throne on Emma Grace’s behalf. It is very obvious that GOD has had his ears filled full. It is awesome what the power of prayer can do; twenty five hours ago the Drs. were fighting to save my baby girls life. At this time she is off all blood pressure support meds. At one time there were 14 IV pumps running. We are down to 7 pumps at this time. 3 of these pumps are running fluids just to keep lines open so that they do not have to fill her lines with heparin. Thank you LORD for everything that you do for my baby girl and my family, GOD is awesome.

And last but not least I want to say a great big thank you to all of the people that have left a not on the guestbook. You will never understand how much your words of encouragement mean to all of us as we ride the ride of our lives.
THANK YOU FOR ALL EVERYONE DOES DO TO MAKE OUR WORLD GO AROUND.

A Very Grateful Daddy
Barney

Monday, April 4, 2005 3:17 AM CDT

This is Tina. Barney asked me to put his cell phone number on here since Trish lost hers. It is 479-601-5453. You can reach him if you have been trying to call Trish.

URGENT PRAYERS NEEDED FOR OUR GIRL PLEEZ - Calling All Prayer Warriors

Emma Grace's breathing situation became more labored Sunday afternoon and the Team was able to get her back under control. She stayed fairly stable and even improved around 6:30pm. Her oxygen stats were better and her breathing less strenuous. From about 8pm on things started to decline and about 9:30 pm the decision was made to place the vent to support her and take the stress off her body from trying to breathe so hard.

The placement of the vent went very well and they placed the arterial line (which checks blood pressure thru the bloodstream) and a femoral line for more access points for administering meds, etx. We understood this to take about 15-20 minutes which turned into 2 hrs. She became more septic (bacteria in the bloodstream) and they are now trying to get her blood pressure back up. There are several meds on board now and she is requiring full support.

It goes without saying that our precious Emma Grace is a very, very sick little girl. Dr. Raj & Dr. Shoti (ICU Docs) have both reported that they are very glad that they intubated when they did as she got so sick very quickly and she would have crashed had we not opted to vent when we did. Are you seeing God’s Hand in the precise timing of this all? They do feel that she is somewhat stable and the good news is that her kidneys are functioning well.

We ask for prayers for the Team of doctors, nurses and staff who have circled our baby with such care and wisdom that God has blessed them with. Please pray that they follow God’s lead in handling Emma Grace’s critical needs.

Please pray also for Barney who left this afternoon around 3 pm and is in Nashville under load trying to get back to Memphis as soon as he gets unloaded. As you can imagine, he is terribly crumbled that he is over 3 hrs away from us at this point. We will update you as soon as we know more information tomorrow. Also, please pray that God gives Barney & me the strength and wisdom to make the best possible decisions for our baby girl.

As always, you cannot know what a comfort it is that God has surrounded us with marvelous, faithful prayer warriors who love our baby girl as your own. God is on the Throne and I know He has Emma Grace cradled tightly in His loving arms as she is His baby girl.

Only By His Grace – Trish

PS … Apologies if you have been trying to reach me by cell phone as I had to suspend the service until I replace my phone. Dumb me left it in the shower room Friday night at St Jude and someone decided they needed it more than me. I’m sick as I had all my numbers in the address book of my phone. So if you have not heard from me, please be advised I probably don’t have your number with me. sorry

Saturday, April 2, 2005 1:39 AM CST

Hello All!

Well, Miss Emma Grace is still not feeling up to par just yet. We had hoped to get out of ICU Friday and the Team had planned to move us to the 4th floor but she is still having trouble breathing good. They put her on a VapoTherm that is oxygen unit that has more pressure to try to open her lungs up better. It has been doing a pretty good job and it seems like she has been breathing a little bit deeper this evening.

The good news is her blood pressure has improved which made everyone feel better. Now, the focus is on her pneumonia which they feel is bacterial. Not that any pneumonia is good but they have more meds to fight bacterial than they have for viral pneumonia. She seems to be resting well so we are just praying the meds work quickly to get her back on track. God has her cradled in His arms healing her little body.

Daddy is loading to head thru Memphis and should be here Saturday evening. He hated not being able to be here with his baby girl as much as I hated having to make the phone call to him to tell him what was going on. Dr. Ed reassured me that the ICU step down unit was precautionary due to her blood pressure already being low which I then tried to double reassure Daddy. We’ve made it fine but I know he feels better with that truck headed back towards us.

Thank you so much for your continued prayers for Emma Grace and her many friends. We pray this is a hurdle that God leads her briskly over and on the road to recovery. We love you and thank you so much for your love and kindness to our families.

Only By His Grace – Trish

Thank you Tina for taking care of the last update for me. I know this is extremely tough on you as well being miles away. Rest assured they are taking good care of our Emma Grace and you all are ever close to our hearts. Love ya sis!

Thursday, March 31, 2005 3:13 PM CST

Hey guys this is Tina. For those of you who don't check my site first I wanted to update you all on the latest Emma Grace news.

As you all know her chest has been a little rattely for a couple of weeks. Today seemed to be worse than normal and a chest x-ray revealed pneumonia in her left lung. From what I understand it has pretty much taken over her left lung. So, they think it is bacterial and as they kill the bacteria the dead bacteria could get into her blood stream and cause blood pressure problems so they have her in ICU in one of the step down units. She will probably stay there for a couple of days and then move on to the 4th floor.

Trish will have her hands full so she asked me to update, and of course it is the least I can do from so far away. Please just lift up Emma Grace so that she can recover from this pretty quickly, Trish as it is hard being a one man show, and Barney as I know he HATES being away from them but even more so when Emma Grace doesn't feel good.

Thank you all for your continued love, support and prayers!

Only By His Grace
Tina

Friday, March 25, 2005 9:56 AM CST

3:49pm update: THE BIOPSY IS IN ... IT'S CLEAN!! IT'S CLEAN!! NO NEUROBLASTOMA CELLS FOUND IN THE BIOPSY EITHER!!! GOD IS GOOD!! GOD IS GOOD!!

Good Friday to All!! Emma Grace is at Day 106 Post Transplant!!!

Ok … everyone who read Tina’s update from last nite needs to put the blood pressure meds down, take a deep breath and relax since she left a cliff hanger in her entry with Emma Grace. (Nothing like keeping the pressure on me to update … I think she & Barney are in cahoots!! Ha)

At last, Emma Grace was able to have her bone marrow aspirate & biopsy completed yesterday which wraps up the last of our “100 day post transplant testing”. Dr. Ray called yesterday afternoon with the prelim report. There are two phases of the bone marrow. One is the aspirate which revealed “NO NEUROBLASTOMA CELLS!!!!” The biopsy should be completed by late afternoon but Dr. Ray said he would call as soon as it was completed BUT he does not anticipate many if any neuroblastoma to show up in the biopsy either!! OH … BIG HALLELUJAHS AND THANK YOU LORD!!! Ain’t God so good?!?!?!? We are going to sing praises where praises are due … God has this all under control and is showing His mighty healing hand right before our eyes.

In visiting with Dr. Ray concerning the results of the biopsy that we are still waiting on, he reminded me that transplant therapy is completely different than chemotherapy. With chemo you get the effect with each dose on the front end and then it is done. With transplant it continues to build so IF we do see neuroblastoma cells in the biopsy, he is not concerned because of how transplant works. My “high tech medical terminology” comment was “kinda like the Energizer Bunny”. That’s exactly what this transplant does. He did say that he is VERY pleased because these are GREAT results. That’s all I need to know … He’s happy, we’re happy. Thank you Lord! We’re ALL happy!!!

WHEW!!! DON’T WE ALL FEEL BETTER NOW?!?!?!?

Emma Grace is feeling so much better this week. She has actually been more like her old self than we have seen in quite some time. Her physical therapy has improved tremendously this week and she is regaining strength. She still has a ways to go but it is just taking time since she didn’t get this way overnight. Alexandra, Dr. Ray’s daughter, came to visit her on Tuesday afternoon and it was GREAT therapy for them to just play. Also, having Bubba Eli here to fuss and play with has been really good for Emma Grace. She has been more, let us say, VOCAL this week with Bubba than she has in months. (with the divine exception of the excessive “Prednisone Patty” episode back in January!!)

Nanna, Patty, and her grandson, Coley came Thursday to see us and left this morning. Patty had baby chicks to pickup in West Memphis and deliver to county extension agents between here and NW Arkansas. They are for the 4H kids to raise for the upcoming fairs. Eli & Coley had a great time and I am so thankful that Nanna was able to come with Patty as she did not need to make this trip alone again this week. Hopefully, in a month or so we will be making the trip home-home. It’s all in the plan but we’ve got some progressive hurdles to cross before we are cut loose to come home-home.

Thank you so much for your friendship, your love and especially your prayers. We are continually amazed at God’s goodness and that He is so gracious in sending such marvelous prayer warriors / friends. Please continue to keep our families in your prayers. We have some very special prayer requests that I will list below. I know my pea brain will forget someone but God knows each and every need. Have a blessed day and a wonderful Easter weekend. Our love to you!!

HE IS RISEN!!!

Only By His Grace – Emma Grace’s Momma

PRAYER REQUESTS:

Tina, Jeff & Hayden and the rest of the Haynes family – for strength, comfort and peace for each day. www.caringbridge.org/la/stanton

Jake Raborn as he is doing chemo. Our specific prayer is that he counts do not bottom out so they can do their Make-A-Wish. Jake has been doing very well and I believe is going to be moving to the Target House with us. www.caringbridge.org/la/jakeowen

Ali Mills just had another surgery yesterday to replace her double-line. Please pray for our precious friend as she has more hurdles to cross and also for her mom, Nancy, who continues to be a rock. They have been in the hospital for 125 days plus. UGH!! The ongoing days in the hospital are wearing on both of them so please pray for healing, strength, comfort and peace in making the best decisions possible for Ali.

Mark Weir, neuroblastoma friend from Illinios who has relapsed. They did brain surgery at LeBonheur last Saturday and will be putting together a new treatment plan for him.

Pamela Hensley starting a new chemo as she has new growth in the lungs again. www.caringbridge.org/tn/pamelahensley

Hallie Gravelle as they continue to battle neuroblastoma and keep her comfortable.
www.caringbridge.org/la/hallie

Jazmine Davis is a precious 6 yr old little friend who has ALL from Illinios. She did her transplant about a week behind Emma Grace. Everything has came back clean with her bone marrow but she is having problem with producing t-cells. She is back in the hospital with fever which they are tributing to a possible virus. With any of our children who do not have their own immune systems, it gets pretty sticky having to treat them. Also, please remember her folks who are having to take turns being in Memphis with Jazmine. www.caringbridge.org/il/jazmine

Christopher, ependymoma friend we met on the RMH / San Antonio trip last November. He is having another surgery on March 29th. www.caringbridge.org/tx/christopher

Another RMH / San Antonio friend we met, Tate Lewis is having surgery April 20th. Tate was born without the left ventricle in his heart. This is hopefully the last of his big surgeries. www.caringbridge.org/tx/tate

The INCREDIBLE Team of Doctors, Nurses, Techs, Staff, and the generous hearts of ALSAC who continue to keep St Jude the amazing place it is for giving our babies every opportunity within their means to be healthy kids. God certainly has blessed many individuals who daily battle our fights with us with the care and concern that they are taking care of our children as their own. Who could ask for more than that?

WE LOVE YOU!!!

Tuesday, March 22, 2005 8:38 AM CST

5:22pm Update ...
Well, Emma Grace's left lung is still a little "junky" sounding so we are doing the albuterol inhaler and hopefully, we will be ready for anesthesia by Thursday. Needless to say, Emma Grace is a wee bit disappointed to postpone the "milky stuff" but as usual she took it all in stride. So, we will update as soon as we know the results. Thanks for your prayer!!!

MINOR DELAY

Sorry for not getting this on here yesterday but to be short and sweet, we did not get to do the aspirates yesterday like we had planned. Emma Grace had a little wheeze in her left lung when they checked her before giving her the sleepy medicine. She had a breathing treatment which helped but the doctor felt better postponing the aspirate until this afternoon at 1:00.

Bubba and Nana got here Sunday evening, Emma Grace was so happy to get to have them here. Nana was joined on the trip by Miss Rita and Rita’s grandson Taylor. They stayed until yesterday afternoon before heading home. Eli had the honor of showing Taylor around the hospital. Eli is staying all week as he is on spring break this week. Emma Grace is having a blast getting spoiled even more than usual.

Please continue praying for all of the St. Jude children, there are several we know that are either at a cross road in their treatment or are here doing follow up scans. Every child here is only one bad scan away from starting all over.

I must confess I was disappointed; I wanted to put the wait and worry behind us. It is times like this that I am reminded just how little control we really have. GOD has everything laid out the way HE wants it, and there is nothing we can do to change it. Daddies love to fix things that are tore up and broken, but there is nothing I can do but set back and make the most out of the ride we are on. Everything works to the glory of GOD, we may not know why at the time, but I look forward to the time that I can ask HIM. But than again it is like Trish says, when that day arrives it will not matter, we will be so happy that the little trials we have had will not matter.

Following GOD’S plan
Barney

Friday, March 18, 2005 9:05 PM CST

ANSWER TO PRAYER

All I can say is Thank You JESUS. Emma Grace had her MIBG scan done this afternoon. Needless to say we did not leave the hospital until Dr. Rupert had checked the report and told us the news. As Dr. Rupert walked up he was grinning and all he had to say was “you see me smiling don’t you,” enough said. He went on to say that we would just watch and wait after we finish the bone marrow biopsy and aspirate on Monday. Dr. Rupert also said that we will redo all scans in 3 months. He said that we will watch other tumor markers in her urine and in her blood. We are going to reevaluate and discuss where we go from here.

Please remember one of our neuroblastoma warriors. Mark Wear did an MRI this morning in anticipation of heading home. From what we have been able to find out he has a tumor in his brain that will be operated on in the morning at La Bonhure. Please lift this family in prayer and pray for guidance of the surgeons hands as they do this delicate surgery.

As I type this update I have the pleasure of watching my baby girl play and just enjoy her evening. Trish is at St. Jude sitting with Nancy in the surgery waiting area. Miss Ali has had to have surgery this afternoon to remove her central lines as they have developed a fungus infection. The Drs. are removing the old lines and replacing them with new ones in different sites. Please pray for comfort for miss Ali and her sweet momma as they endure yet another set back in their long journey for a cure.

Be sure and remember the Holder family as they deal with the loss of Sara Claire’s uncle who was killed in an auto accident.

I know everyone wants to here about Emma Grace and Trish’s trip home but unfortunately you are going to have to wait on Trish to update to get that scoop as I did not get to join them. I had to deliver a load in northeast Ark. on Sunday night. I know that Emma Grace was able to see E.L.F. (short for Emma’s Little Flit.) She is an American quarter horse. Elf was born last April 28th. That happened to be the first anniversary of Emma Grace’s first transplant. I came home that evening and found her standing next to her momma. I called Emma Grace and told her that Flit had had her baby, her only question was what did you name it daddy? Of course daddy being the softy that he is named her after his baby girl. Thank you Beetle for working with Elf and having her ready for Emma Grace to see.

Please remember all of the kids and their families at St Jude in your prayers. There are many here that are facing very trying times that need a lot of spiritual support. It is easy to give and it does not cost anything to give. All it takes is a little effort to talk to (as my wife is fond of saying) the Big Guy after all HE knows all about it anyway. Thank you for all that you do.

Walking In SONSHINE
Barney

Thursday, March 17, 2005 10:38 PM CST

HAPPY ST. PATRICKS DAY

I give up; I am not alone saying (Get R Done) so I will attempt to do it myself for every ones peace of mind. Emma Grace started Scans on Monday with a nuclear bone scan. It had to be done over two days as her bladder was still full on the first day. Of course we still do not have any answers as Dr. Ray is out of town until Monday. Tuesday she had a C T scan. She manages to hold still long enough for a C T so she does not have to be sedated. One of the few tests she stays awake for. She had the pleasure of doing Physical Therapy with her Ali, Ali worked really hard so Emma Grace could see how she was doing. Ali does not know how it broke my heart to see her struggle so hard just to get up on her knees. After she was back in her wheel chair I patted her on the shoulder to tell her how proud of her I was and she reached up and held my hand and laid her head against my arm. Ripped my heart out and shoved it down deep in her pocket. A very special young lady that has had to endure way more than any child should have to as she has been fighting neuroblastoma 8 years.

Wednesday was an easy day as all Emma Grace had were lab checks and clinic visit. She spent the day trying to recover from Tuesday evening. We had a small reunion in our room at Target Two. We had 3 of our St Jude buddies come over for dinner with us. They were all in town doing scans and follow ups. From what we have heard Jakob and Rebecca are doing great. Christal looked good. Emma Grace and Christal were so happy to get to spend time together with out having to look thru a window.

Today Emma Grace had to do Physical Therapy to evaluate what her needs are. One of her meds has caused her to loose muscle tone in her legs so she is going to be doing P.T. 3 times a week. She tried so hard today, she wore out really fast but she refused to quit until everything they had ask her to do was completed. Needless to say she has slept since 3p.m. She did wake up to eat supper and than right back to sleep on mommas lap.

Be sure and remember Brent Nason this week as he is also doing scans this week. His mom and dad told us that he has been cleared to do his transplant. He is also a neuroblastoma patient that started treatment last fall.

Jake Raborn made another great escape as he was released from the hospital this afternoon. He has been fighting another line infection. Every thing looks good and his momma said they are going to try to sneak home for the weekend. Way to go Jake..

Tomorrow Emma Grace has her big scan of the week; she had her MIBG nuclear injection today so that they can do her MIBG scan tomorrow. She has been looking forward to this scan all week as she gets the sleepy medicine. This scan takes 1 ½ hours to complete so she sleeps right thru it. She has the weekend off and then she gets the Sleepy medicine again in Monday as she has her bone marrow aspirate and biopsy. The MIBG and the Bone Marrow test are the two big test.

Please remember to pray for all of our St Jude kids and their families as they continue fighting the beast that no person (let alone a child) should have to fight.

Always Walking in the SONSHINE
Emma Graces Daddy

First, Thank you Barney for Gittin' R Done!! Great Job, I love you for being able to focus when my vision seems cloudy. (Told you he's the best part of me) Also, we need to ask for prayers for the Wilson Holder Family. Wilson is Sarah Claire's uncle. Wilson was killed in an auto accident this week around Hattiesburg, MS. Please lift this sweet family, who is forever part of our family, in your prayers. Thank you & love ya!

Friday, March 11, 2005 3:46 PM CST

This is going to be the shortest and sweetest of all my journal entries ...

Emma Grace is doing GREAT! She got off of TPN on Thursday as she has been eating better. She has been off the CADD pump of dilaudid since Sunday nite and doing oral meds of dilaudid as needed. SOOOOO...since we are off until Monday we loaded the big red truck and put it in the wind to sneak home until Sunday!!!! SURPRISE NW ARKANSAS!!! Emma Grace has not been home since Aug 19, 2004. We had not seen Eli since Jan 1st ... needless to say, it was time for all!! It's just Emma Grace and I as Daddy is trucking so he can spend time with us doing scans next week.

I'm not going to elaborate as we are enjoying HOME-HOME while we can. I have a full heart to tell about our trip to Minden to see our Haynes' but it's going to have to wait.

We love you all and thank you so much for your continued prayers for Emma Grace and all the St Jude families.

Please especially remember Hallie Gravelle as she is in ICU and trying to manage her pain issues. She is another little neuroblastoma darling that we have become attached to as well as her dear family. I know they would love to hear from our prayer warriors for our little Hallie girl. www.caringbridge.org/la/hallie

Also, our friend Michael Day from Tishomingo, MS is having his MRI on the 23rd I believe. Please remember him in prayer.

Brent Nason, another neuroblastoma buddy from Mississippi is having post chemo scans next week. We are praying for the "all clear" so they can proceed with the transplant phase. www.caringbridge.org/ms/brentnason

Good News! Zoe Jo's scans came back CLEAN!! We love seeing another neuroblastoma buddy with clean scans!! Hallelujah!!www.caringbridge.org/il/zoejowolsfeld

Mr. Jake is getting a break from chemo. Please continue to lift them in prayer as they stomp the beast in the ground!! GO JAKE GO!! www.caringbridge.org/la/jakeowen

Please continue to wrap our Haynes family up in prayer for continued comfort, strength and peace. Angel Stanton certainly has taken a big part of our hearts to Heaven with him. www.caringbridge.org/la/stanton

May God's Sonshine Wrap You Up!!! HE IS SO VERY GOOD!!!

Only By His Grace - Momma Trish

To the Dear "Jake Owen Believer" - Thank you so much for the precious, PRICELESS poem on our guestbook entitled "Sisters By Heart". You cannot know how perfect your timing was for Tina and I both. I may never know who you are but you are such a blessing!! Thank you and May God fill you basket full of His riches!!

Monday, February 28, 2005 10:08 AM CST

Talk about short and sweet (ok, so it is for me!) ... well, here it is!

Emma Grace is doing really well. She was bailed out of isolation Thursday afternoon!! WHOO WHOO!!! We are back amongst the masses without having to come in the "back door" of the Jude so to speak. She finally had negative stool cultures for the adenovirus. Let me just say, she has started being her "old self" again as much as she can considering she's "ME". (poor baby!)

Another HALLELUJAH to share ... Dr. Barfield and Katie, our nurse practioner, got all her meds changed to ORAL!! Which in summary means ... no more daily trips to the Medicine Room for these IV meds. AIN'T THAT A PRAISE!?!?!? She still has to receive her IVIG (anti-rejection meds) by IV every Monday but that's a picnic compared to our daily routine. Let me just say it wasn't all bad by any means because when you're in isolation your social calendar IS the medicine room!! And besides, the Med Room crew spoil us just as they do everyone here!

Ok ... we have several prayer requests that need your attention please.

The Haynes Family whom we love and miss tremendously. Tina started back to work today o please say an extra prayer for her as she tries to get back in the swing of her career. www.caringbridge.org/la/stanton

Jake Raborn having PET to see if any cancer is presenting and will start chemo. www.caringbridge.org/la/jakeowen

Ali Mills as she continues to be on the 4th floor. Our dear friend has been in the hospital since Nov 22nd. Also, please remember her mom, Nancy, as this is a daily challenge for them both.

Hallie Gravelle back in the hospital with fever after chemo. www.caringbridge.org/la/hallie

Brent Nason for ANC to recover in order to do scans and biopsies. They are hoping to get him into transplant soon. www.caringbridge.org/ms/brentnason

Etta Mae Brewer, Angel McKenzie Brewer's grandmother, in Prichard, WV. They discovered she has lymphoma last Thursday. This is a precious lady that we feel as our own family.

The many children all over who continue to battle daily with incredible strength and everlasting smiles. They are truly amazing.

Thank you so much for your continued prayers for Emma Grace as she continues to improve. We are at DAY 79, post transplant and will do another round of scans and biopsies around DAY 100. We love you all and are ever thankful for your loving kindness. God is so very good!! May His Sonshine Surround You!!

Only By His Grace - Emma Grace's Momma

Tuesday, February 22, 2005 2:02 AM CST

Hello … yes, yes, it’s really me!

Well, it goes without mentioning that I’m way behind on updating as well as many other tasks. If you can believe it, I’ve not even logged onto the internet nor even turned on my computer since last Tuesday. I get lost in many reasons why and the only real conclusion I have for my recent “anti-techno-connection” would be my emotions have been on overload the past week and I just whimped out. Selfish? Maybe. But not intended to be, it was just what I had to do to get by, catch my breath, take care of my girl and I’ll still be trying to process it all for a long time.

Emma Grace was released from the hospital (again) on Saturday evening. YEAH!! She is doing much better and we are starting to see more “zest” in our little darling. She is still on TPN and the dilaudid CADD pump at a very low dose which seems to be keeping her comfortable. She has started with some “wheezing” which we are addressing with an inhaler at present. Please pray this takes care of the problem. She has been down for quite sometime so therefore is susceptible to the respiratory gunk. We make our daily appointments to the Medicine Room for IV meds and are currently still in an isolation status for adenovirus. We are praying that status changes soon so we can mingle amongst the masses again. She has actually been trying to eat lately which is a huge improvement. And her emotional frame of mind has been improving as well. She finally has started talking about her little buddy Stanton as of Sunday evening. She too feels part of her heart left for Heaven and has slowly started her way “around the corner” to where she can at least talk about her friend Stanton being in Heaven. We are just giving her time and much love to try to help her through what we don’t even understand. God does so we’re leaving it up to Him.

Our trip to Minden was as much amazing as it was heartbreaking. We have always heard of what a remarkable place our dear friends were from and seeing is certainly believing. The folks in Minden and surrounding areas are incredible. The love and support they show for “Their Stanton” and family is indescribable. Mr. Stanton’s services were truly a tribute and celebration of a precious life he shared with so many and we’ve yet to see how many lives have been touched by Stanton. Bro Wayne did an extraordinary job as I know this was no easy task but you could certainly feel the presence of God. Who could ask for more? I know we are not required to understand, all He asks is that we trust Him.

Tina, Jeff and Hayden – You know our hearts are with you always, our prayers are without end, our days in Memphis are ever missing you and our love, well, it’s one that last through eternity. Tina, how you blessed my heart to ask me to stay by your side. My mission was to comfort you and I’m the one who left Minden with yet another basket full of blessings. Thank you for sharing your walk with us. We love you and miss you beyond words.

We are so thankful that God worked it out for us to make the trip. Monica, Sarah Claire’s Momma, went with me and we met up with Barney in Minden. Mimi Sharyn and I passed each other on the highway somewhere as she came to stay with Nanna and Emma Grace. Thank you Sharyn for taking care of “my girls” and especially for making me feel more at ease for leaving them in the hospital. You are a treasure! Also, thank you Monica for being my travel partner and “navigator”. I think we still surprised folks that two adult ADD’s could travel so well together and not even get lost one time. I sure enjoyed the love and support and especially the wonderful windshield time of visiting. You are precious to us and I know that God sent you to share His love as you always do so freely. Your sweet Momma taught you well and I see her in you every time we’re together.

We had wonderful visitors from home-home on Saturday – Paula & Alicia Wright and Vicki Bailey. Emma Grace had started to perk up that morning and was in pretty fine form by the time they got there. It was so great to see them and we had a grand visit. Little did they know they drove all the way to Memphis that day to help us pack up our room at The Jude as Emma Grace was getting released. Thanks Galz for making the long turn-around!! I know from experience that’s not an easy trip in one day. But thanks again … you made our day!!!

Nanna went home Saturday morning as I’m sure that Poppa and Eli were glad to have her back in their neck of the woods. I do know that I could not have made it last week without her. Thank you Mom for dropping everything in a moment’s notice to come stay with us!! There’s no one like your Momma when you need them the most.

Emma Grace is sleeping soundly as I type … she’s had her bath, greased up with lotion, did her dressing change and we’ve done the bucket full of meds for the evening as well as hooked up a new bag of “steak and taters”. Her little stuffed pup, “Fetch” is laying on her tummy where he always does this time of night. (Fetch has been quite the companion ever since Ms Emily from Dr. Turner’s office gave it to her. He’s never out of sight and you gotta love a dog that doesn’t mess, bark, chew or even beg.)

May God’s Sonshine surround you and carry you in the warmth of His loving arms. We love you and thank you so much for your continued prayers for Emma Grace and her many friends who are in this battle.

Only By His Grace – Momma Trish

PS...Please remember one of our little neuroblastoma friends, Hallie Gravel. She has recently relapsed last week and this week requires more tests to see where they go from here. I believe they now have a website at www.caringbridge.org/la/hallie

Monday, February 14, 2005 11:16 PM CST

First and foremost, thank you so much for the overwhelming love and support you have sent not only to our family but to especially our Haynes family. There is no doubt that we are ALL family when it comes to the love shared by God.

Emma Grace is doing fairly well. It wouldn’t be a surprise to tell you that we are back, yes BACK in the hospital as she describes it – she “popped a fever”. Also, she is having some issues with the high blood pressure again. This is all part of the transplant expectancies so we are to anticipate “suitcase drills” from time to time. Hey, we made it 14 hrs last time of release and we progressed to 72 hrs this time so we are improving our length of time out. I’ve learned not to fully unpack; it’s just easier that way as you never know when you may have to load it all back up again. God knows what is best and as much as I would like to out, it’s best for her to be here. Once again, His timing is impeccable as I had come to the conclusion that Nanna and I can’t manage with the physical requirements of giving her the best care much less the mental aspect with the loss of Stanton. I’m quite sure that in addition to fever and high blood pressure that she has a broken heart as well.

Needless to say, the past two days have been indescribable. As much as it has been for us to process it has been even more difficult for Emma Grace. I don’t begin to understand so how can we expect her to? It’s just going to take her some time … she lost her very best friend not to mention to the very disease that she is also fighting. It’s a lot for an adult to bear much less a four year old. She is wise beyond her years and has had to mature in so many ways. She fully understands that Stanton is in Heaven now. Tina and I sat down with her early Sunday morning after he was gone. We had decided not to pursue telling her prior to his passing unless she asked specifically about how sick he was. All along we continued telling her that he was very, very sick. She knew … there’s no getting anything passed her.

When Tina, Jeff and Hayden left Sunday they asked us to release Stanton's birthday ballons today. Today is Stanton's 4th birthday. At the time we did not realize we would be back in the hospital so we had to get creative. Christal, Chris, Grandma Lois, Laura and I came around to Emma Grace's window so she could be part of Stanton's birthday balloon release. When she talked to Jeff and Tina on the phone this evening she told them that Stanton got his balloons. It was a precious moment to share in his honor.

Please continue to pray for Emma Grace not only for her healing but for coping with the loss of her Stanton. He was certainly an amazing friend to her that she loved like none other. I can’t begin to understand what is going on in her little heart. Also, if all goes well, Nanna and Mimi Sharyn will be taking care of Emma Grace while I am traveling to Minden for Stanton’s services. Please pray that things will go smoothly for Emma Grace as well as Nanna & Mimi.

Especially, please continue to lift our dear Haynes’ in prayer as they face each day. They are incredibly strong people that I have the greatest love, admiration and respect. The winning attitude that Stanton shared with everyone came directly from Tina and Jeff as they always let God’s light shine through no matter how difficult the situation. What a blessing they are! There is no doubt knowing how much Stanton loved to win … He truly has won!! And is celebrating his 4th birthday in the presence of Jesus. Don’t you know that’s a party we can only imagine?

Arrangements have been made for Stanton’s services for Thursday at 2 pm. The visitation will be Wednesday from 5 pm to 8pm. Tina will be listing details on his website this evening. www.caringbridge.org/la/stanton

Also, in lieu of flowers, the Haynes' have requested for donations to be made to St Jude and the Ronald McDonald House in Stanton's honor.

We love you and thank you again for your overwhelming love and kindness. May God’s Sonshine wrap you up as we celebrate the life of our little man, Stanton.

Only By His Grace – Emma Grace’s Momma

"He gathers the lambs in His arms and carries them close to His heart." Isaiah 40:11 NIV

Saturday, February 12, 2005 5:25 PM CST

Sunday, Feb 13, 5:25 am Update =
Our little man Stanton earned his greatly deserved angel wings around 2 am this morning. He is safe in the arms of Jesus - Victory is his. We love you! www.caringbridge.org/la/stanton

PRAYER REQUEST FOR OUR STANTON -
Please lift Stanton and his dear family in prayers as he is back in the hospital and his condition starting worsening this morning. He has started into multi-organ failure earlier today yet he still keeps bravely fighting on. Thank you so much for your continued prayers for our dear Haynes family as they face these incredibly difficult moments. Our prayer is for comfort and peace for all involved ... especially our precious Stanton.

Thursday, Feb 10th:
Thursday Greetings to All!

Ok ... hard to believe but I have not been online since Monday a.m. So, I would say I have some catching up to do. It’s been a wee bit hectic to say the least but that would be nothing new in our world so you’d think I’d be used to it by now, eh?

Well … to catch everyone up to speed … we were actually discharged on Monday evening about 7:00 after our 3 wks plus stay. Then after a LONG night at the Target House we came back to St Jude for our 9 am appt with fever plus blood in her urine. Needless to say, the fever alone bought us another admission at The Jude. She had been on continuous pain meds thru a CADD pump while inpatient and we had hoped the oral pain meds would hold her. But unfortunately, they did not so once she was back on the CADD with constant delivery of dilaudid all is well and manageable. The tummy aches are better and seem to best managed with this medicine. The skin rash is remarkably better. She had her colonoscopy on Friday which the pathology report today leans toward the samples showing viral. So the consensus is the adenovirus is probably the culprit of the diarrhea. The GVH seems to be much more under control and she may be able to “wean” slowly off the steroids. (Let’s all get a ‘Thank You Lord’ in for that possibility!) The issue with her urine is evidentially from the bladder walls being “thick” which we have seen on her ultrasounds done over the past 3 wks. She had another one today that shows more of the same with considerable “clots” in her urine which we are hoping will pass without having to catherize and irrigate. Let’s just pray she is able to handle this by herself as we understand the other option is not pleasant.

The summary is … if Emma Grace stays fever free, we MAY get to blaze out of here on Thursday?? We have learned not to pack our bags until the official word with discharge papers in hand. We do have the preplan of sending her out on the dilaudid CADD this time to avoid getting her behind the 8 ball with discomfort again. We have been thankful to have Nanna here with us since Saturday and she’s going to have to go home Thursday. Poppa called this evening and Eli is apparently coming down with the flu bug. So it is definitely time for Nanna to the NW Arkansas Rescue. Poppa and Eli make it well batching it but Poppa is ready for recruits when illness shows up.

Barney & I were able to slip out of the hospital on Sunday for Our Little Man Stanton’s birthday party at the Target House. There was several family members in for the weekend as well as Tina’s staff showed up so they decided it would be a good time for an early birthday party. Stanton wasn’t feeling too good at first but got more wound up when the confetti guns got going. He even shot me in “the biscuits” which actually got not only a smile from Stanton but others as well. Of course, I had to over exaggerate the whole effect of “being shot” – hey, whatever it takes to let him have fun. The King’s came with a Spiderman sofa that folds out into a bed which was a huge hit with Stanton. Later he opened Emma Grace’s present which was a black and white pic of them in a frame with “Friends” and handprints at the bottom. Someone asked Stanton if that was his girlfriend and he quickly answered “no” but made sure he propped the picture of him and his "Emma Gace" right next to him on the Spiderman couch. It was absolutely precious and priceless. Needless to say, it was time for me to find some fresh air …

In being at the hospital so much I feel I haven’t been able to be with the Haynes’ as much as I need to be. It all seems so surreal yet the harsh reality is heart wrenching. I pray that God will give me something besides the helpless feeling that we all are experiencing. The best I know to do it be there as much as I can for our dear friends knowing that God already has it worked out and will give us the direction needed. Tina and I actually had some TNT time on Monday evening which was long overdue and greatly needed by us both. I’m ever grateful for our sistership that God has given and in that gift we take the ups with the downs yet we never dreamed we would travel this road together. It truly breaks my heart. In the short time Tina and I spent together Monday night, I was in hopes of lifting her spirits and encouraging her. It never fails, I’m always the one who walks away with the blessing. She truly is an amazing lady and my precious, Tina. Please pray that God will provide the comfort, strength and peace for our Haynes Family and especially, for His merciful Hand who is carrying Stanton close to His heart. www.caringbridge.org/la/stanton

Also, please pray that God will give Barney & me the gentle words of wisdom to share with Emma Grace when the time comes that we have to tell her the truth about her Stanton. I haven’t had the heart, the words and God hasn’t opened the door for us to discuss just yet.

My dear friend, Paula, entered this on our guestbook and I know God wanted her to share it with me therefore; I’m sharing it with you. Thanks Paula! God’s timing is always perfect. "From the end of the earth will I cry unto Thee, when my heart is overwhelmed: lead me to the rock that is higher than I." Psalm 61:2

Our Miss Christal’s scans came back with reoccurrence – new tumors. These are inoperable therefore the options of treatment have changed to chemotherapy. Christal, Chris, baby sis Kylie Hope and Grandma Lois arrived on Feb 1st and will be returning home next Tuesday. If I recall correctly, I believe Christal will be starting her new oral chemo on Friday. Please be in prayer that this chemo is successful and the tumors respond well. This is obviously not the news we had hoped to report and again we are reminded of the continuous battle that our children face with this beast. I know they would love to hear from you on Christal’s website: http://christalinfo.servemp3.com

As most of you know, we lovingly call the Ronald McDonald House in Memphis, “Uncle Ronnie’s”. Uncle Ronnie’s has been our home-away-from-home on 3 different occasions for a total of 11 months since Oct 2002. We have been so very blessed to meet many wonderful families thru this home, friendships that are more than life long. This home is truly a home that love built and provides many families just like us a place to stay while our children are going thru treatments at St Jude. Ronald McDonald House is not funded by St Jude as most would think so they rely strictly on donation to keep this home open for our families. It would be great to see donations made in honor of our little man Stanton as this is where we first met the Haynes Family. Below is the info and thank you!!

Rock 103/Ronald McDonald House Radiothon is February 10th and 12th. The event begins at 6am on February 10th and goes straight through until 10am February 11th. Call 1-800-230-KIDS to make a donation. This event is live from the Ronald McDonald House in Memphis. They raise half their operating budget for the year with this event.

Also, another big event in Northwest Arkansas which again we are asking for your help – the annual KIX 104 St Jude RadioAThon. I failed to get the 800 number from Jake McBride when I spoke to him earlier last week but I know you can go on their website www.kix104.com to make donations for St Jude. For those of you who are “at home” listening in, I’m quite sure they will list the number many times. Barney and I are disappointed that we won’t be able to be there to help this year and once again, we’re here at St Jude knowing how vitally important your donations are for our children and the search for a cure.

Thank you so much for your continued support for these two great establishments which are obviously very near and dear to our hearts.

Please continue to pray for Emma Grace and her friends who are the bravest children I have ever met. Also, for the many Teams of Doctors, Nurses, Researchers and Staff at St Jude who take our continued battles to heart and strive to find the missing pieces to this heart breaking disease. Please especially pray for our little Stanton, Tina, Jeff and Hayden during this indescribable journey and the days of comfort, strength and mercy.

Only By His Grace – Emma Grace’s Momma

Thursday, February 3, 2005 1:03 PM CST

UPDATE 2/3/05 10:10PM
This is the update that Tina asked me to enter on Stanton's website tonight ... sorry but I can't update on my own tonight ...

Well, first of all – this is Trish attempting to fill in for my sister Tina tonight. I’ve sat with the laptop in front of me for several minutes now staring at a blank screen knowing there are no easy words for this entry. So, with a deep breath and a broken heart, I’ll try.

Our worst fears for the results of Little Stanton’s bone marrow aspirate / biopsy have come to surface today. Dr. Furman told Jeff & Tina late this afternoon that Stanton’s bone marrow is completely packed – not a single healthy cell to be found only neuroblastoma cells. Also, the CT shows there appears to be spots on the liver as well and apparently that removes him from the bone marrow transplant possibility. In summary, there is nothing more Stanton’s team is able to do for him other than keep him happy and comfortable.

It goes without saying prayers are needed unlike we have ever asked before. We prayed that this would never be the reason to ask. Please lift Stanton, Tina, Jeff, Hayden and the rest of their family to our Father who has all the answers to the questions we all are asking right now. This is heartbreak that only God fully understands with a love we can only imagine. As Tina mentioned in a recent journal – when we hurt, He hurts.

Thank you for your faithful prayers, your love, friendships and so many wonderful kindnesses you show to this dear family we have adopted as our own. You are truly gifts from God.

Tina asked that I be sure to include the following verse. God promises He would never leave us alone … He’s always here with open Arms, unconditionally.
“Though I walk thru the valley of the shadow of death, I will fear no evil; for Thou art with me and Thy rod and Thy staff they comfort me.”

Only By His Grace,
Trish for my Sister, Tina
Please feel free to drop the Haynes' a note on Stanton's website. I know they would appreciate all the support during this difficult time. www.caringbridge.org/la/stanton

2/3/05 1:03pm Update:
Hello to All and Happy 13th Birthday Bubba Eli!

This is going to be short and sweet … specific prayer requests for my kids.

Well … we are still in the Penthouse at The Jude. This Saturday will be three weeks which is necessary but a bit longer than I had hoped. Regardless, we gotta do what we gotta do.

Emma Grace has improved in the itchy skin dept which a big plus and the GVH gut hence diarrhea is maybe a little better. We have other issues to add to our continuing list which are now adeno (spell??) virus plus high blood pressure. The adeno virus was confirmed yesterday which gets us back into an isolation status. (Oh joy, bliss and happiness.) Adeno virus described is a cold virus to you and me but with Emma Grace’s impaired immune system it has to be treated with stout antibiotics. In trying to determine whether the tummy cramps are from GVH or adeno virus, they are going to scope and biopsy in the “southern section”. It is relatively quick procedure that requires general anesthesia as we all know Emma Grace is thrilled to receive. The high blood pressure is evidentially caused from the prednisone as well as the cyclosporine both of which are used to control the GVH. The Team has given four different meds to try to bring the b/p down but none have been very successful for very long. The Team has called in the Nephrologists (blood pressure specialists) to address this concern. They should be here shortly to consult with Emma Grace & me. We thank God for the improvements we have seen and have to turn around to ask for mercy and strength for the new situations that have arisen. Please pray that we can get the blood pressure issue under control soon as well as her adeno virus. It doesn’t look like we are going anywhere anytime soon.

Our little buddy, Stanton had his bone marrow aspirate / biopsy this morning and is having a CT scan at 1 pm. Tina and Jeff should hear this afternoon the results which determine what the next step is. They are looking to see if the bone marrow is trying to recover and what percentages of neuroblastoma cells are present. Our prayer is that this last chemo has tackled the beast and this percentage will be low so they can proceed with the transplant. Stanton has been feeling somewhat better lately and playing more which makes everyone feel better. His white blood cells improved today so we are hoping the ANC will start upward soon. Please lift our Haynes Family up with power prayers as they patiently wait this afternoon. It is really tough not being able to go support physically since we are in isolation. Tina and I have been doing the “air hugs” from afar.

Miss Christal is here for her followup scans and tests. She looks great and is also having surgery on Friday on one eye. We had the wonderful pleasure of meeting little sweet sis, Kylie Hope, for the first time. What a precious little bundle she is!! My arms have ached to hold her but it's a blessed pleasure to be near her. I may not get to hold her this round but I'll catch up next time. Oh well, I did get to help name her and I got a quick smile which melted my heart!! Our prayer is all is well with Christal's scans which they should know about tomorrow.

As always, we thank you so much for your faithful prayers for Emma Grace and her friends. We love you bunches and I will update as soon as I can.

Today our Eli turns 13 … not sure how that time has flown so quickly. Have a marvelous birthday Eli!! Wish Momma, Daddy & Sissy could be there to celebrate!! Love you more than you’ll ever know Son!!

Holding to Him only By His Grace,
Momma Trish

Friday, January 28, 2005 4:32 AM CST

Greetings from the Princess’s Bedside!!

Well … Emma Grace seems to be improving somewhat. The itchy skin is much better and once we can get the tummy aches and diarrhea in check then hopefully, we should be getting closer to being outpatient once again. Emma Grace is looking forward to getting out again and I can say that I’m right there with her. The “Prednisone Princess” has been more subdued lately. Thank you Lord! My continuous apologies were starting to wear thin. Wednesday and Thursday have brought times of the “old” Emma Grace back. She even walked around the 4th floor Thursday evening which is the first time she has been out of the room since we arrived on the 15th. And she even ate about ¾ cup of chicken noodle soup Thursday … and it stayed down!! YEE HAW!! Seeing her feel a little better makes Momma feel better.

The Team felt like it would be good to get her back to the dermatologist, Dr. Turner, to continue her PUVA or “suntan bed treatment”, as she refers to it. It was sure helping her skin when we were outpatient so they arranged for an ambulance to carry us out to Bartlett for an appointment Wednesday. Emma Grace was so excited that she was going to get to ride in an ambulance but made it clear no lights or sirens. She sat on the edge of her bed for over 30 minutes waiting for her chaperones. We are headed back on Friday for another round via “specialized transportation”. Emma Grace was even more excited to get to see Dr. Turner and his crew. I’m quite sure that not many folks visit the dermatologist’s office on a stretcher with paramedics in tow so I can only guess what was going on in the minds of those in the waiting room when we arrived. “WOW!! That must be SOME PIMPLE!!!” Oh well, who says we don’t keep things stirred up??

Wednesday was one of those days that God just kept filling my cup. First, Emma Grace starting to perk up and feeling better, plus seeing her so excited to see Dr. Turner again.
Todd, Alicia & Emilie DuBose came by for a quick visit right before we left and it was so good to see them. Sweet Emily was asleep but looks great! What a precious family God has shared with us! Emilie had MRI which showed the tumor being slightly smaller. AMEN!! She is continuing with chemo and seems to be handling it pretty well. You can visit Emilie’s website at www.caringbridge.org/la/emilie

Our dear friend, Donna, had come by early that morning to visit and bring Emma Grace a fleece Princess backpack that unfolds into a blanket. Needless to say, it made the trip to Bartlett as well because she has been attached to it ever since she saw it. She knows the love that is tucked into its comforting warmth. I’m pleased to share that Ashley’s recent scans are CLEAR!! Thank you Lord!! We all know the anticipation that comes with waiting for scan results as we all exhale to hear His wonderful news. What a blessing this family is to us and continue to share His Sonshine to everyone they meet. Ashley’s website is www.caringbridge.org/tn/ashleygarrett

I was getting on the elevator prior to departure to Dr. Turner’s and ran into one of our families from 2003 RMH days, Sarah Starks, Mom Vicki and sister, Anna. It was such a surprise to see them as they were here just for a check up. Sarah looks incredible!! You’ll remember Sarah was not given much of a prognosis with a rare brain tumor and as we speak, still is CLEAR!! What an amazing testimony this family has and it was so wonderful to see them again.

I slipped downstairs later that evening to the 2nd floor to see our little friend, Stanton. It did my heart so good to see him sitting up in bed (without ordering me out … ha!), giving me a half smile and working so intently on his computer. He was determined that the Blues Clues game would work despite what Mr. Jeff was telling him. All the while giving me the justification why it should work. I wish I had a camera as he kept his hand on his chin as if he were scratching his imaginary whiskers. It was a hoot! He kept changing the CD’s in his computer until sure enough, it loaded. I had to smile (sorry Jeff) as Stanton reminds me so much of his sweet Momma. Strong, inspiring and determined – you’ll be glad to know I’ve never seen scratch her chin whiskers!!! I’ll never be able to tell you what this dear family means to us … maybe when the ages roll the words will come. I’d like to think that then we will not need verbal descriptions – it will all be understood. Please continue to pray for our little buddy Stanton as he continues to have an ANC of 0. The MIBG scan done on Wednesday shows stable. Dr. Furman met with them today to let them know they are trying to get the donor lined up for collection. Specifically, we need to target prayers for the beast to stay “at bay” so they can get him into transplant. I know Jeff & Tina would love to hear from you at www.caringbridge.org/la/stanton.

Next door to Stanton is our sweet little friend, Jake. He has a line infection which got him full service accommodations at The Jude as well. Jake was sitting up with Aunt Mo in the bed being his precious, silly ole self. What a little miracle he is!! God’s Hand is so evident in his little life and it is absolutely amazing to see him continue to be so strong in his recovery. I left his room all smiles as he had shared his sweet smiles with me and blew me kisses … some which I placed in my pocket to take to Emma Grace. Momma Staci and Aunt Mo are holding down the fort at The Jude while Daddy Don holds down things on the home front. Please continue to lift this amazing family up in your prayers. They are so precious to us and we are ever thankful God has allowed our paths to cross. God’s light certainly shines thru them. Jake’s website is www.caringbridge.org/la/jakeowen

Ok … sound like Wednesday was a full day?!?!? I have yet to mention that in the hustle and bustle of the morning hours I get a call from Ali’s mom, Nancy who is still in ICU. Nancy was bouncing to tell me that they had “been shopping”. Ali wanted out of the bed and to go visit the crew in CT plus a swing thru the hospital gift shop. HOW AMAZING IS THAT?? Nancy said when she called that Ali was still sitting up in her chair and was eating jello. She has been quite interactive to say the least and continues to slowly improve. Well, then later in the early hours of Thursday morning when I thought my heart couldnt be more full, I get a visit from Nancy. Ali has requested my presence to visit. So what it was 1:45 am?? Ali has lots of catching up to do, ya know. Emma Grace was snoozing well and the nurses are so good to keep an eye on her so I can have occasional breaks. Ali had received a pedicure and manicure with brilliant new polish and was ready to visit. She kept trying to persuade us to get her up again but the ICU nurses said twice in one day was plenty. We ended up entertaining with Emma Grace aka Prednisone Princess stories until Ali announced she wanted to “pretend”. Our trips went from flying in a leer jet to NYC to see Jeff Probst to snow skiing in Colorado complete with resort lodge, snow bunny outfitting and accessories right down to the warmth of the hot chocolate after a long day on the slopes. It was priceless … especially when Ali drifted off to a much needed rest.

Barney said he talked to brother Marvin and sis in law, LeeAnn, is now home after her hysterectomy on Monday. She is doing pretty well after staying an extra night in the hospital. Please continue to lift her in prayer as she is healing.

Last update I actually did in more of a rush than normal and I failed to mention someone very precious to us. (As crazy as last week was it’s a wonder I remember my own name but that is certainly no excuse.) Mimi Sharyn showed up last week when we needed her most. Emma Grace had talked to her on the phone and cried because she missed her. Last Tuesday, Barney was on his way out on the truck, Mimi Sharyn “appeared” without our knowing she was even in town. She’ll never know what a welcomed relief to see her that very moment. She even stayed the night missing her grandson, Hays’, (Sarah Claire’s bubba) birthday party. Hays talked to her on the phone that afternoon while I was getting some much needed rest and told her he wanted her to stay here to take care of Emma Grace. Ohhh … what a darling he is with such a big heart! How blessed to have both Nanna and Mimi Sharyn here with us on two very tough days and I was able to get some much needed rest. Mimi, you can never know how thankful I am that God sent you and your family to us in our journey thru St Jude. But most of all, how grateful that God sends you when He knows I need you most. Thank you for taking time away from home to help out especially when Emma Grace was quite “trying” on us all. You are such a wonderful friend and I love you bunches!

We have so much to be thankful for as God continues to bless. I’m ever amazed that God gives us just what we need. There’s certainly a difference in what “we want” and what “we need”. His love reaches depths I can’t even begin to comprehend. I just know that I’m so thankful He loves us all so very much. There are times when I let my attention get off of Him; it’s so easy to get down. He ever so gently puts a Hand on my chin to look up at Him. He sends His children to share His love, encourage, inspire and remind us we are truly never alone. Most of all, He’s always right here.

Chris, Christal & the precious new baby, Kylie Hope will arrive in Memphis on Feb 1st. We are looking forward to seeing them as they will be here all week doing tests and scans. Please pray that all continues to be GOOD with our sweet Christal. I know Chris is anxious as we all are but we’re leaving it in God’s hands.

Thank you for your faithful prayers for Emma Grace and many little friends and their families who we have adopted as our own. We love you and you cannot know how you lift us with your messages, calls and especially your love and prayers. God is so good!! Keep looking up!!

Only By His Grace – Emma Grace’s Momma

Sunday, January 23, 2005 11:07 PM CST

Where is January Going???

Howdy to All! Just wanted to let you know that Emma Grace aka “The Prednisone Princess” is still in the hospital. We are trying to get her GVHD moderated – the key is we need some but it was getting to be a bit too much so she was on 100 milligrams of prednisone a day for about three days. We pray that they got the GVHD in check so we don’t have to travel that road again. SHOO DOGGIES!! There were a few more altered personalities besides Ellie Mae – who I might add was an angel compared to the “others” we saw. Bless her little heart, not quite the sweet little Emma Grace we have been accustomed to but her attitude is getting better. Today the tummy seems to be better, less nausea, diarrhea and no fever. The good news is the itching is better and her skin looks better. Plus, she finally tested negative for c-diff, bacteria in the stool, so we are now out of isolation. Our constant reminder is GVH is our friend – “normal” scans are the target and that can always put us back into perspective. We trust she will continue to improve so we have get bailed out of here again and get back to Dr. Turner for her PUVA treatments again which really seemed to help her skin. One day at a time … God is in control and thankfully, He has given a double helping of strength for all of us the past week.

Nanna was here last week from Tuesday thru Saturday. Talk about thankful for her help this past week. She and Barney had their schedules down pat … he left Tuesday at noon and returned Saturday wee hours around 3:30. It was one of those weeks I know I couldn’t have “fought the battle” by myself. Eli stayed with Aunt Judy and Poppa holding down the fort in Prairie Grove. Thank you Nanna & Barney for being the Relief Team! Also, thank you Aunt Judy for taking care of Bubba Eli when I needed Nanna here with us.

Our buddy Stanton is still on the 2nd floor and has continued to run fever. They are adjusting his medications and trying to keep all the bases covered. His counts are still zero so not sure if they will be able to do the bone marrow biopsy this week but he is having the MIBG scan. Please continue to remember Little Stanton as well as Jeff and Tina as the days in the hospital are long to say the least especially, when our babies don’t feel their best. www.caringbridge.org/la/stanton

Little Mr. Jake starts his new regimen of chemo tomorrow. Please lift them in prayer as we all believe this will put the beast behind them for good!! What a miracle God has performed on our little friend!!

Miss Ali is still in ICU but holding stable. Please continue to lift them in prayer as her road is slow and long as they begin their 5th week in ICU. Also, please remember Nancy as she boldly faces each day with renewed strength and determination.

My sister in law, Leeann Hampton, is having surgery Monday morning around 7:30 and she certainly needs our prayers for all to go well.

We have been so thankful to be “at church” via speakerphone with our church in Summers. Emma Grace, no matter how rough she may feel, always wants her new bible to follow along. It’s so good to worship with the folks at home and to hear them singing praises. The miles may be between us but our hearts are right there. Thanks for the continued calls to make us feel right at home.

My “Emma Grace” quote for the week has been spoken straight from her little heart and I just can’t help but share it with you. There have been many occasions this past week that she would remind us … “God has gotten us this far”. Thank you Lord for these gentle reminders from our precious 4 yr old who continues to let Your light shine!!

We love you and thank God always for you!! Thank you for continuing to lift our children up in prayer as they bravely go forward!!

Only By His Grace – Emma Grace’s Momma

One of my favorite songs is “Heavenly Sunlight” and it’s on my heart to share …

Walking in sunlight, all of my journey; Over the mountains, thro’ the deep vale;
Jesus has said, “I’ll never forsake thee,” Promise divine that never can fail.

Shadows around me, shadows above me, Never conceal my Savior and Guide.
He is the Light in Him is no darkness, Ever I’m walking close to His side.

In the bright sunlight, ever rejoicing, Pressing my way to mansions above;
Singing His praises, gladly I’m walking, Walking in sunlight, sunlight of love.

CHORUS:
Heavenly sunlight, heavenly sunlight, Flooding my soul with glory divine.
Hallelujah! I am rejoicing, Singing His praises, Jesus is mine

Monday, January 17, 2005 7:04 PM CST

Howdy January Do To All!!

Yes…Yess…YESSSSSS!!! Let’s just start this much overdue entry out with a big BANG!! Emma Grace had her post transplant MIBG scan done on Thursday and the news on Friday is (and I quote from the actual report) “Finding: NORMAL”!!!! Thank you Lord!! We have not seen a “normal” MIBG since we started this whole shooting match. (A refresher course: remember this is the nuclear body scan that “lights up” neuroblastoma cells, “hot spots” on the skeletal features. She had the large spot on right arm between elbow and shoulder, both femurs, hips, as well as other spots.) Dr. Barfield is such a wonderful man, he couldn’t wait to tell us and rejoice in these results. He had Ms Katie page him as soon as we got to B Clinic so he could officially share in the news!! He said they expected to see improvement but was pleasantly surprised to see “normal”. I’ll be honest, you could have knocked me over with a feather. Why should I be surprised? Because I’m obviously human, but I can tell you one thing for sure, this was no surprise to God. He’s got it all worked out. Hallelujah!! God is so very good!!!

We knew the “Momma Cells” were causing havoc especially with the skin rash but in a good way as she has developed GVHD (graft versus host disease) which we need a reasonable amount of to fight the cancer cells. Her skin rash – which looks like a bad case of measles or poison ivy – now covers about 90f her little body. She started the PUVA, ultraviolet light treatment, a week ago Friday. This has helped ease the itchy effect on her skin. She thinks it’s pretty cool getting to go into the “suntan booth” and that’s exactly what it looks like but controlled by the dermatologist, Dr. Turner, a dear man in Bartlett. Now, get this – while visiting with him we find out he has a farm by Wedington off Jackson Highway. So he’s familiar with our hometown and has been there more than we have recently. His wife works at St Jude and is actually the person who processed the HLA donor match for Emma Grace’s transplant. His daughter and son-in-law live in Fayetteville and go to church at Little Elm in Farmington. It’s always amazing to meet more of the extended St Jude family that God sends our way.

Friday started off with Emma Grace just not feeling well. We had several appointments plus gave our story at the annual Country Cares for St Jude Kids in the Pavilion. This is the annual kickoff for the upcoming radio-a-thons all over the country. Emma Grace slept in her red wagon the whole time I spoke so I knew she really wasn’t feeling like her vivacious ole self. There were about 200 folks from radio stations all over the country in the first session and thankfully, we were blessed to see our buddy from home, Allen Woody from KIX 104. We had no idea he was with the first group until after we spoke. We also had the added blessing of having visitors from home, Marianna Traylor and her parents Mr & Mrs Sellers. They were on their way to her aunt’s house south of Nashville and made the stop to visit us at The Jude. Emma Grace was getting meds in the Medicine Room so it was perfect timing of us not being “on the run” for different appointments. What a blessing to get to visit with them even though the time was short. God always knows to send folks when we need them most.

After a long day Friday at the hospital plus our visit out to Dr. Turner’s for the UV tx, we landed in our apartment at the Target House. Emma Grace’s skin rash has been doing better. Sometime during the night we started with many visits to the potty and throwing up. When we got to the hospital on Saturday her rash had started to show up a little more plus we had developed a slight fever. They decided since she was unable to keep anything down that we would start doing the prednisone IV twice daily in the Medicine Room which is targeted for her GVHD. So we went back to the Target House to return for the 9 pm dose. The Haynes’ were such a help with Emma Grace as she didn’t want me out of her sight while trying to load the truck with the obvious necessities of the anticipated hospital stay. By 6 pm we were back at St Jude and knew that she would have to go inpatient as the rash was worse and the fever was persistent even though it was low grade. So the moral of that story is … we are back inpatient and they have decided her GVHD has moved to the gut. Common and manageable and I keep reminding myself as miserable as she is at this point the GVH is necessary to continue combating the beast. We are back in the Penthouse, 4th floor and trying to keep her comfortable from the belly aches and itching. Evidentially, the Momma’s t-cells are going gangbusters attacking here there and everywhere and Dr. Barfield said we are going to increase her steroids and add another med to control the GVHD. We need it but we are “moderating” its effect some. Ok … one more reminder for me and you … this is a good thing.

Daddy is here as of 2 am today and will not have to leave back out until Tuesday at noon. So I have some relief and got some really good naps in today. Also, my mom is coming Tuesday for 2nd shift. Emma Grace feels better sitting on the bedside potty and even sleeps there at times so therefore, we have brought the potty next to the bed, pillows in lap and she sleeps. Hey, whatever it takes to keep her comfortable.

Ok ... Let’s continue with more praise, Praise, PRAISE!!!

Stanton finished his high dose round of chemo and has been “low riding” more than usual as it certainly took some zip out of him but saying that, let’s say this … his LDH (tumor marker for neuroblastoma) continues to decrease!! It is down to 3700 today!! Thank you Lord!! We are anxiously praying and waiting for the next round of scans to see if he’s ready to start in the transplant phase. He is back inpatient with a fever as of Sunday morn wee hours. I talked to Jeff a bit ago and Stanton is trying to play more now but still in low gear. We knew after they got out of hospital last week he wasn’t feeling up to par because he didn’t even want his “Emma Gace” in his room. Hopefully, by the time we all get out of The Jude they will both be feeling more back to norm. Please feel free to leave the Haynes’ a note of encouragement at www.caringbridge.org/la/stanton

Our little man Jake has blazed thru his surgery with flying colors, spent his time at LeBonheur, moved to St Jude, was later discharged and on Saturday they were headed home-home for a break before chemo!! Talk about a little man who is truly one of God’s miracles … it is overwhelming and absolutely amazing to see God’s Hand working so mighty thru these past 3 major surgeries and in the life of little Jake and his family. They are such a blessing to all they meet. We have gotten attached to the whole crew. Always a smile on their faces, always having fun to the fullest and continuing to give God His praise and glory no matter what. Enjoy time at home Sweet little Jake!! I know the Raborn crew would love to hear from you if you get a chance. www.caringbridge.org/la/jakeowen

Ali, who is still in ICU, asked for a milkshake on Friday!! Now, whatcha think about that? She is continuing to slowly regain her strength but let me assure you of one thing – she’s as sharp as a tack, quick witted as ever. Ali has her “afternoon interaction activity / conversing” schedule while being her charismatically charming ole self with a voice that is very “small” since she is still pretty weak. She’s been in ICU 4 wks today and certainly has come a long way baby. Her bilirubin is coming down ever so slightly but hey, that’s a trend and we’ll take it. We have decided they took the “scenic route” of this transplant journey and we’ll meet in the middle again somewhere along the road. With our two girls they should be learning LOTS concerning this experimental transplant as we “Pioneer 4 A Cure” filling their data banks with both perspectives. Emma Grace thinks we should still be able to go to her door to say hello but has forgotten that when you’re on the 4th floor, that’s where you still until released.

Ok ... so we've got all inpatient floors covered; Stanton is on 2nd, Ali is on 3rd and Emma Grace is on the 4th floor. Nothing like hanging out at The Jude!

Well, somehow I have managed to write a small book (again) and continuing to apologize for the lengthy and delayed entries would somehow be expected at this point. My intentions always seem to be good but I have found that when Barney was here fulltime the first go round that I updated more frequently. As bad as I have been at updating lately, I have been even worse at calling folks or even returning messages. Oh here’s a novel idea … I’m 40 plus now and a cancer momma so that could be my crutch. Ha! And thank you sister Tina for notifying the world of my birthday. I really thought I had slid past it this year but I got busted. Thank you so much for the sweet birthday sentiments. You all are the best!! I do apologize as I know everyone is concerned and faithfully praying. Here’s a commitment – no news is good news and should the news be less than good, I promise to have my Tina update for me. We thank you so much for your encouraging messages on the guestbook, your love and faithful prayers. You cannot know how grateful we are that God has placed you in our lives. We love you and thank you again for your continued prayers for Emma Grace and her friends.

Only By His Grace – Emma Grace’s Momma

Please remember Dillon Wells family as he went home to be with Jesus last Friday. Our hearts are sad to see another one of our angels go home and yet are thankful for his complete heavenly healing.

Thursday, January 6, 2005 2:32 AM CST

**New Contact Info Updated below**

Blessed New Year to All!

WE’RE OUT!! WE’RE OUT!! 32 DAYS SERVED … AND WE’RE OUT!!!! (Oh, did I say that ‘we’re out’??? HA!) The “Penthouse Suite” on the 4th Floor of the Jude has now been relinquished as of New Year’s Eve about 8 pm. (Yes, I know and I’m just now updating … oh and thanks so much for your gentle, yet justified promptings. They did not go unnoticed just unscheduled.) Emma Grace is doing pretty well from her treatment … still not feeling up to par but getting her feisty ole self back. Thank you to the Crew on the 4th Floor for taking such marvelous care of our baby girl!! You know, she never has been spoiled a day in her life … (smile!)

And whew wee!! What a week and a half it has been!! Emma Grace had her bone marrow aspirate and biopsy last Wednesday which has resulted in her BMT Team seeing LOTS OF MOMMA CELLS in the smears!!! Yeah!!! Dr. Barfield told us on Monday that the bone marrow biopsy shows less than 5isease. We are praying for these Momma Cells to go forward into full battle against this beast that has persistently held ground for these past 27 months. Emma Grace has developed a mild touch of GVHD (graft versus host disease) which actually we need a little of to attack. Dr. Barfield & Dr. Rupert are closely monitoring this in order to manage the amount needed to “combat”. She has developed the usual skin rash that accompanies GVHD which has made her a bit miserable as she isn’t sure which spot to itch first therefore, goes from one area to another. We are trying different remedies but haven’t been too successful yet. Hopefully, this will subside in a week or so – give or take.

This week has proven to be full days at The Jude … there was a certain luxury to being inpatient; everyone came to her room for treatment. It seems like I have met myself coming and going and for those of you who know me all too well, that’s quite a feat with my more than “voluptuous” size! Oh well, not complaining – it has just been a full week already and this is only Wednesday! Whatever it takes … right??

OH AND BY THE WAY …. DID I MENTION WE MOVED OVER THE WEEKEND??? Yeppers – we are officially living closer to Midtown now in the Target House. We really didn’t have anything else going on so we thought that we’d just throw that in the hopper as well. Actually, we knew that we would be moving to the Target House after Emma Grace was finished with Transplant. We kept putting it off as we have so enjoyed our days at Uncle Ronnie’s. It was almost like “leaving home” again and well, I just don’t want to go there right now. One thing that made this transition more smooth is that the Haynes' moved with us!! Yeah! We felt it was for the sanctity as well as sanity of the Target House and Uncle Ronnie's to move our kiddos together. We are so thankful to be in the same house and actually the same floor just down the hall! Thanks to our Family at RMH for once again making our experience at The House a collection of memories to add to the treasure chest!

You know, moving is never an easy chore to begin with not to mention when it almost felt as if we had as much at the hospital as we did in the room @ RMH. Well, not quite but it sure took some doing to get everything packed. I do know that we would not have made it had it not been for our overnight guests last week Ms Patty & Ms Brenda better known as the “Movers & Shakers”. They went to Uncle Ronnie’s and got after it while we were still inpatient last week. What a blessing to get to see them plus the much appreciated helping hand of packing. And as if Emma Grace wasn’t spoiled enough, they bribed her to take her yucky medicine by paying her … with REAL PAPER MONEY!! Hello?!?!? Dimes, nickels and quarters would have been tops with me … now you set the bar a little higher for Mommy Dearest. I’m hoping she knows that Momma just won’t give in to dollar bills.

With each day I thought I would have this update complete and uploaded to Emma Grace’s site but it just seems more keeps happening. I’ve tried to sort in my mind the facts while my heart among many others once again is breaking. As some of you may already know, our dear little fella, Stanton had his scans and tests this week after the MIBG nuclear tx in Philly. The first of the tests to return was his bone marrow biopsy which shows that his bone marrow is full of disease. My Tina called me in the Medicine Room late yesterday afternoon as she didn’t wish for me to hear from someone else. Truthfully, it was if I had hung up the phone to hear the news about my own child. There’s just no other way to explain it and it just makes me sick!! I know there is something for God’s glory in all this that God is trying to show us and it just gets hard to recognize when our hearts get broken with “less than positive” news of our babies. Please pray for our Stanton as he goes back into the hospital tomorrow to begin yet another phase of high dose chemo. Specifically, that the chemo will knock the beast for a whompin’ loop so they can proceed with the transplant phase. Also, please lift Tina, Jeff & Bubba Hayden in prayer as they face the days head on and ever with a smile on their faces even in the midst of obvious heartache. They certainly are shining God’s light and I’m always amazed at the strength God gives especially when times are really rough. If you haven’t read it already, you should and you’ll see exactly what I mean about letting His Light shine. Read the Jan 4th entry in the journal history to see what God shared with Tina and Jeff about the “day’s event” and “Who’s in Control”. Trust me, it will bless your heart just as they bless ours! I know the Haynes’ would love to hear from you if you would like to leave them a note on their guestbook. www.caringbridge.org/la/stanton

Our queen diva, Ali, is still in ICU but has continued to improve. Since last update Miss Ali was placed on a ventilator, liver dialysis, chest tube, the works. Last Tuesday was a critical time for her and she certainly had some major hurdles to overcome. She has developed VOD, venal occlusive disease and GVHD which complicated matters. Her liver needed to make a turn or it was just a matter of time. Her dear Mom Nancy told Ali on Wednesday morning that “it was ok …” In essence it was up to God and her as she and Ali had fought a good fight together. Ali is such a strong willed little lady and is full of pure grit – just like her dear Mom. She is faithful that God has blessed her life and obviously, God is in full control. Well, needless to say and saying this still with guarded cautions, Miss Ali was removed off the vent today and what a welcome sight. She is such a beautiful little darling. Emma Grace and I spent some time in ICU waiting room this afternoon with Nancy & Crew and after the vent was removed actually got to stand in Ali’s doorway to blow kisses and wave. Emma Grace (another child who seems to be pretty strong willed) made it plain that she wanted to see Ali and tell her she “loves her”. I can try to describe it but my words won’t come near. With Emma Grace waving to her dear friend who has been pretty “out” this past week, Ali made it clear she was glad to see Emma Grace as well. She waved back with her precious, weak little hand. Emma Grace, still wearing her required mask, then started blowing kisses at Ali who in turn blew one back. The whole scene was priceless as we can only imagine how difficult it was for Miss Ali. She has been pretty stationary for over a week yet she proved once again that she’s fighter and she gathered whatever it took to share affections with her Emma Grace. Ali certainly is in need of our prayers as she still has a ways to go before being completely recovered from the VOD.

Our little man Jake Raborn had his biggy, biggy liver surgery on Monday which God has certainly blessed. The lengthy surgery has made our little Jake tumor free and they only had to remove 35f his liver. The doctors were pleased with the surgery and once again, we know who was in full control of that operating room. Though His presence wasn’t seen in physical form, His mighty Hand led the way. Mr. Jake is still in critical condition in LeBonheur so please continue to lift and his sweet family in your prayers. Jake’s an amazing little man with God’s story already growing in his little life. Don’t cha just love it when God changes the meaning of a word?? What some folks would say “impossible”, God says in His world, “I am the Possible”. Go Jake Go!!! Prayers continuing for you!! www.caringbridge.org/la/jakeowen

Another little man that we lived with at Uncle Ronnie’s last year, Jakob Valenzuela from Fontana, CA. He and Mom Sylvia were at St Jude for check ups a couple of weeks ago. He is a medullablastoma patient in remission and on Dec 26th had problems with his shunt. It evidentally blocked off and caused the brain to swell. Not sure as to what they are looking at with rehab once they are able to recover him to that point. Last word I received he is still in ICU, having breathing problems which the doctors are trying to remedy. www.caringbridge.org/ca/jakobmvalenzuela

Ok … I realize that there are already a whole passle of paragraphs to catch up on and I have yet to tell you about Christmas. Let me just say … It was quite amazing to say the least. Our kids will remember this past Christmas at “The Jude” for many years to come. Nanna, Poppa and Eli did finally arrive on Christmas Eve and we were thankful to have them with us safe & sound. There were many “Santa’s in the Sleigh” which took care of every detail to make our Christmas extraordinarily special - a time to be together as family, seeing two children light up with their wish list opening before their very eyes and most of all, for giving of your hearts to our family is humbling beyond what my feeble words can say. Just know – and you all know who you are – that we thank God for you and pray for His blessings on you always. The Christmas season is the ultimate reminder of God’s Perfect Gift and how He so unselfishly gave for the eternal joy of others.

We love you all and please know that whether you hear from us or not – you are always in our prayers and we thank God for your love, support, friendship and most of all, your faithful prayers. You are incredible and we just can’t say thanks enough for all you do. Keep Looking Up!!

Only By His Grace – Momma Trish

Monday, December 27, 2004 4:34 PM CST

Sonshine Greetings to All!!

Emma Grace is doing much better today and is even producing her own platelets and hemoglobin for a change. The BMT Team is very pleased with her progress and is looking to getting us out hopefully, later part of week. She will have a bone marrow biopsy on Wednesday. They expect to see neuroblastoma cells so we will just see how much the “Momma Cells” are to set battle strategies. Our goal for this week is to try to get meds down orally, try to drink and eat which have been obstacles the past couple of weeks due to the mucositis. Baby steps, baby steps … but overall is progressing very well.

Christmas has been absolutely amazing!!! I am still trying to absorb the magnitude of compassion that has been shown to us and therefore, I am postponing my entry concerning our Christmas experience. (Believe me, I have already started notes so be prepared!!)

I apologize that I can’t elaborate on the usual update right now but my heart is heavy as there are some very critical prayer requests that needs our attention please …

Our dearest Ali has been moved to ICU as of about 2:30pm. She has not had a “good day” since last Monday. She started with fever again, liver enzymes rising, just lots of things not going in the right direction. They did a liver biopsy at 1:30pm today as well as an ultrasound of her liver to determine whether she has GVHD or VOD. They are leaning towards VOD, venal occlusive disorder, which doesn’t allow the liver to filter as it should. I’m not as knowledgeable about VOD as I should be but I’ve said all that to say this … Our sweet Ali is a very ill child and needs our prayers in a big way. God is way bigger than all of this and we know He is in full control. We have become very attached to this dear family and we feel helpless in effort to console with the exception of beckoning our prayer warriors to join with us in lifting them up.

Also, precious Jake is having his BIG liver surgery Tuesday. As I mentioned in the previous entry, there are many surgeons that will be involved with his surgery. Needless to say, this surgery will be lengthy. I have envisioned God checking and double checking the surgery room itself, preparing and conditioning the surgeons with the extraordinary knowledge to make each move with precision being lead by God’s gentle Hand during this procedure. Please lift Jake’s family up as this will no doubt be an extremely difficult day for them. I don’t know of many of us who are good “waiters” so please cover them with prayers as well. The surgery will be at LeBonheur and there is a whole host of family and friends who will be present for tomorrow’s surgery so I’m quite sure LeBonheur will not be the same after having the attendance from these dear folks.

Our friend from RMH, Dillon Wells who has been on Hospice for a couple of weeks left to go home to Kansas today. Mom Cindy decided it best and they made the departure for home today. Please pray for Dillon’s comfort and peace as well as for his dear family during these difficult days.

It’s already been a full day and we feel as if our hands are tied when wanting to help our precious friends. The best I can do is giving them to God. I’m so thankful for the gift of His love which is above any love we can know. He is able and His mercy endures forever. We thank you from the bottom of our hearts for your love, support and most of all your prayers for Emma Grace and our precious friends. We love you and thank God for you always!

Only By His Grace – Momma Trish

Thursday, December 23, 2004 4:44 AM CST

Blessed Holiday Greetings to All!

It’s beginning to look a lot like Christmas … as the song goes and OH BOY, IS IT!!!

Before I get any farther along I can’t hold this any longer …. DRUM ROLL PLEASE AND GET THE HALLELUJAHS READY ….. We learned Wednesday from special testing done on Monday that Miss Emma Grace is 100% ENGRAFTED!!!!! Those Momma cells are now 100% in our Emma Grace, are unpacking their suitcases and have started to set up housekeeping!!! Our prayer is they are suiting up for battle, multiplying, growing and setting their radar to attack and destroy the enemy. THANK YOU LORD!!! This is a major step with the whole transplant process and will be one that requires lots of patience (on my part) and covered in prayer.

Ok … now for our dear medical professionals out there that just read the above statement please do not think you have failed in your attempt to “get thru” to me. This was the easiest way I knew to explain engraftment and you should know me by now, keeping it simple is way less taxing on my brain. I do realize we have quite the road ahead of us for recovery and for the “Momma Cell warriors” to accomplish their mission but I’m so thankful for today. God is good and has the “tomorrows” on His shoulders while carrying us in His arms.

Now … WHEW!!! Wasn’t that a DANDY to start off with?!?!?

Emma Grace has slowly started to improve. On Tuesday, she stayed up all afternoon with no napping, played with our Sweet Haley (Sedation “Dream Team” nurse) who stayed with her so Momma could go get a few Christmas gifts taken care of and then didn’t go to sleep until almost 1 am. We had an extra special blessing of getting to be “live” via webcam from our St Jude suite to Aunt Judy’s house in Prairie Grove, AR where the Maxwell family was having our traditional Christmas gathering. Brad, my cousin, and I had planned it as “Operation: ST JUDE”. It was planned as a surprise for the Maxwell crew and my folks didn’t even know about it. It was SO WONDERFUL to “be there” and see everyone, talk to them and I think they were just as tickled getting to see our baby girl. Emma Grace had had a full day and didn’t participate too much but she enjoyed playing with her favorite sticker book (thanks Aunt Mo!) doing her own little thing. You just gotta love the world of technology because for us it truly WAS the next best thing to being there!! Oh, by the way, the curly locks started to slip on Saturday and as of this writing they are gone. Well, not really “gone” … they are collected in a large basin next to the bed. We’re thinking it would make a great Christmas gift for Dr. Barfield, our transplant doc! HA! Oh well, this is just another phase and hair is pretty minute in the grand scheme of things.

I’m not sure if I can get thru this next message without humbled tears or with the full ability to convey what is truly in our heart for you. And since some folks have wished to remain anonymous, that wish is respected ... you know who you are even though we don’t but you cannot know how you have deeply touched our hearts with your loving generosity. There are so many caring folks who have made this Christmas beyond words for our family. It is amazing the angels God has sent our way thru this journey and our hearts are overwhelmed at the compassion you have shared in making this a truly unforgettable Christmas. Our thanks can never be enough so the only thing I know we can do is cover you with prayer knowing God has noted each kindness. We’ve asked that He save some very special jewels for your crowns awaiting. You are absolutely amazing and our hearts are overflowing!

Our dear NB friend Ali is also 100% engrafted which they found out by last week’s tests. It looks like she is still going to be our “suite mate” thru Christmas as well. She has started to improve and had bone marrow biopsies done yesterday for progress status. What a God send this family is to us! You know we have said in the past “this ain’t our first rodeo” since we’ve been doing this for over two years now. We knew the transplant would be tough and expected the “normals” that we didn’t have a clue about the first time around. Let me tell you, we are certainly “babes” in this situation as Miss Ali & dear Nancy have been doing this almost 8 years!! HELLO?!?!? Talk about two tough cookies and they are both absolutely precious. We are so thankful that God has allowed our paths to cross in this journey and especially for the opportunity to allow the friendship to grow. The 4th floor nursing team knows (usually from the laughter) which room to come find Nancy or me. We have been trying to develop our own “Laughter Therapy” program and poor Ali is our test model. It has worked on various occasions though. (Ali is probably just being sweet so we’ll GO AWAY!!) It’s pretty obvious who takes priority when Emma Grace asks one of our dear nurses to go get Nancy to help take her medicine. Nancy is a spoiler and loves Emma Grace as if she’s her own. What a blessing to have the Mills Girlz to make this experience as positive as possible! Ali has decided that we are having Christmas together just outside our rooms as there is a Christmas tree already in place there for us to gather around.

Thank you for your continued prayers for Granny Pat. She is pretty sore and bruised but has been slowly improving. In summary, it seems that Granny may have had a TIA, (I think that is correct) which is a term for a mild stroke. She was driving, she could see the road and curve, could hear Grandpa Charles questioning her driving but was unable to respond or react. They said it was like the lights were on but no was home. Please continue to keep her in your prayers as the days ahead rely completely on God’s strength and mercy. Barney did made it back to Memphis on Saturday, stayed with Emma Grace & me for about an hour then headed to Oden in SW Arkansas to be with his mom. They held a memorial service for Grandpa Charles on Sunday which Barney was able to be there for as well. I know we aren’t to question and I know that God doesn’t give us more than we can handle, it’s just that sometimes the shoulders seem a bit loaded. I’m reminded (again) in 2 Corinthians that “His grace is sufficient”. Our lives may suffer shock and heartbreak but God is never surprised as His will is perfect. Remember the saying we have shared over and over that we found on a wall at St Jude? “God doesn’t promise us a perfect life, only His perfect love.” How very true and Thank You Lord for your perfect, precious love.

Nanna, Poppa & Eli left yesterday afternoon for Memphis to be with us Christmas. They ended up having to get a hotel room as the weather was too much. Not to mention, I-40 between Little Rock and Memphis has been shut down. So, we hope to see them on Thursday sometime. Barney is in Houston headed back to this area hopefully by Friday. Please pray for not only our family but everyone traveling in this wintry blast.

The Haynes’ and Raborn’s have been our precious RMH helpers and I just don’t know how we have been so blessed to have them in our lives. They have been holding down the fort, helping with laundry, delivering our mail, you name it. And I’m quite sure I don’t have a clue what all they have been handling for us in our absence at Uncle Ronnie’s. I sure miss getting to knock on the wall to agitate Jeff or running next door for my Haynes and Raborn fixes. And I REALLY miss my Tina Time!! Our hearts are there guys … and you are so very precious to us. Thank so much – we love you!!

Stanton has been doing pretty well since his MIBG tx in Philly. He’s receiving blood and platelets which was to be expected. He will have his post tx scans / tests the first week of January then they will determine what’s next. www.caringbridge.org/la/stanton We pray the nuclear treatment has knocked that ole beast for a loop and sent him packin!!

Dillon Wells is hanging on bless his little heart. I visited with his mom, Cindy and Dillon yesterday while they were visiting the 2nd floor to meet Buddy Jewell. They are keeping a smile on their face as always. Hospice is on board now and they are just taking one day at a time. It is so heartbreaking to see our friends in such trying times. We pray for God’s comfort and mercy not only for precious Dillon but his sweet Momma as well.

Little Jake Raborn and family met with a team of doctors and will be having his biggest surgery yet on his liver possibly as early as next Friday. Please lift our little buddy in prayer as this is a very difficult, complex surgery. Because of tumor involvement in the liver they will be taking out the right side of his liver. Also, the inferior vena cava which connects to the heart is involved so there will be several surgeons on hand for this surgery. We pray for comfort and peace for Little Jake as well as his precious family. We know God is already there mapping out the plans for the surgeons and it is all under control in His Hands. www.caringbridge.org/la/jakeowen

Also, please pray for two little friends we have met who are also on the 4th floor with us doing transplants. Little Jonathan Summers www.jonathansjourney.com and Miss Jazmine Davis www.caringbridge.org/il/jazmine.

We thank you so much for your continued prayers for Emma Grace and her many friends who face each day with a smile on their face, love in their heart and with determination and strength straight from God to fight this battle. May your holidays be filled with His love and know that we are ever grateful He has blessed us with you.

I want to share my favorite verse from “Away in a Manager” and close for now … God bless and we love you!!

Only By His Grace – Emma Grace’s Momma

“Be near me Lord Jesus, I ask Thee to stay
Close by me forever, and love me I pray;
Bless all the dear children in Thy tender care,
And fit us for Heaven to live with Thee there.”

Friday, December 17, 2004 3:18 AM CST

UPDATE FRIDAY, DEC 17th 2:55 pm
URGENT PRAYER REQUEST: With a broken heart I have to ask for your immediate prayers for the Hampton / Young family. I received a call from Daddy Barney earlier this morning and his mother, Pat and stepdad, Charles Young were in a serious car accident. Pat is in the hospital with injuries but Charles did not survive the crash. Not much info on what happened except is was a one car accident. They were on the way to the vet in Hot Springs and sad to say their chihuaua (spelling?)dog, their "baby" also did not survive the crash. Granny Pat's injuries are evidentally not life threatening but we have yet to hear from my sister in law at the hospital. Please lift our family in prayer, also as Barney is in Houston trying to get here in order to get to Hot Springs. Also, considering Emma Grace's current condition I do not have the heart to tell her about Grandpa Charles or Granny Pat. Thank you for lifting our crew in prayer and I will update as soon as I have further info. We love you all!

Hello & Happy Holidays!

Just a quick note (ok, so ‘quick’ for me!) to let you know what’s up with our baby girl. Emma Grace is fairing along pretty well. She actually made about 6 laps around the 4th floor Tuesday on a trike (her FAV). She got to stick her head in Ali’s door to say hello before she went off on her trike excursion. This was the most enthusiasm we had seen out of her since Stanton showed up.

As energetic as she was Tuesday, later that afternoon she just got “pooped”. She has her feisty moments but would just rather rest and we’re praying those ‘Momma Cells’ are going / growing!!! Her counts are just rock bottom as we are approaching day plus 8. Dr. Rupert and Dr. Ray feel around day plus 10 we should start seeing improvements.
They did report that they saw what appears to be a few of ‘my cells’ on her smear of Wednesday mornings lab work. Alrighty then and Thank you Lord!! That’s a good start.
Just praying it will go fast for her so she can start feeling like her old self again soon.

Daddy did get to roll in for a few hours Wednesday evening as he was headed to Mississippi. Emma Grace perked up a bit to see her Daddy! He will hopefully return on Saturday. It is really hard for him to be away when she is so sick and Tango has been marvelous on getting him thru the ‘home front’ as much as possible. It’s been quite the emotional week so Barney’s quality, not quantity stop was needed by Momma as well as Emma Grace.

Miss Ali seems to be rocking along just lovely. (As ‘lovely’ as things can be during transplant.) She appears to be engrafting which is wonderful news! And they may actually be home for Christmas. Please continue to remember this precious little lady in your prayers. Ali and her mom, Nancy, are two very special St Jude family members that have made our trip to the Penthouse much more tolerable not to mention, entertaining! Ha!

We had the blessing this week of getting to see Monica, Roger and Mimi Sharyn. Since patients aren’t allowed in the rooms on the 4th floor we didn’t get to see our Sarah Claire. She is doing really well and her MRI came back clear! Hallelujah!! As you know the Hays & Holder Family are near and dear to our hearts. It is always SO very good to spend time with them. It never seems long enough though. But God always places them here when I need them most. Funny how He works that way, eh??

We had a very special visitor Thursday from home, our dear friend, Jake McBride from KKIX 104. Emma Grace was pretty perky to see him considering she had just received a dose of pain meds. She kept that smirky smile going on which is just taunting with him. Her way of really saying, "I love you or I wouldn't give you such a hard time". We had a great visit and she did make sure Jake had his hug before he left for home.

Special prayer request for our little friend at Uncle Ronnie’s house, Dylan Wells. He has several brain tumors that have returned since his recent relapse and he and mom, Cindy met with Hospice today. Please pray for these dear folks as they face the days ahead. Cindy has decided to stay in Memphis with Dylan rather than returning home in Kansas. She and I discussed the comfort of having an overwhelming support system at St Jude that doesn’t compare to anything we can describe. I have the greatest respect for her and her decisions to do what is best for her and Dylan. We are asking for God’s divine Hand of comfort, peace and love to surround them.

Well, it looks like we will be spending our first Christmas in the hospital at St Jude. You know, I thought it would bother me somewhat not to be at home but “home” defined is where our family is, it’s not about geography. Eli, Nanna & Poppa will be coming to Memphis for “Christmas At The Jude”. We are just going to do what we have to do and that is taking care of this baby girl so we can have LOTS more Christmases together.

We love you all more than you can know and love reading the encouraging guestbook entries. Emma Grace has “gotten into” wanting us to read her guestbook to her. Lots of times she will comment, “that was so sweet … they didn’t have to do that.” Thank you for continuing to lift Emma Grace and her friends in faithful prayer. God is good and is in full control. May God’s love envelope you as we celebrate His priceless gift of Jesus’ birth. Keep looking up!!

Only By His Grace –
Momma Trish & little “Trishette” – Emma Grace

Tuesday, December 14, 2004 3:04 AM CST

Greetings All … only 11 more days to Christmas!!

Emma Grace is doing pretty well and seems to be tolerating things as well as can be expected. I think she may be starting to have some mucousitis from the chemo as she started complaining of her throat and stomach this afternoon. They gave her some morphine which shortly thereafter she started picking and itching. Bless her heart she about rubbed her poor little nose off. Needless to say, we will use something besides morphine next time as she had a miserable afternoon / evening. She looks as though she’s been hanging out at the beach with her new thiotepa tan. The chemo has changed the pigment of her skin which is normal just as last year’s transplant when she received topotecan. The chemo has caught up with her as she has been pretty ill at her stomach tonight / this morning. As I look into those deep blue eyes that speak volumes, I pray I could take it all away. It is so hard to see her so low and it makes me more angry at the beast we are combating. She truly is in God’s loving, healing Hands and it’s almost as if His Hand leads mine as we’re brushing back her hair to comfort her. I am so thankful God is my strength and His love endures no matter what.

Dr. Rupert is on the floor this week and he feels like all is going according to schedule. He said he was very pleased to see “Momma’s good cells” last week which he felt she would engraft hopefully, pretty quickly. Emma Grace is resting well now after her long day / night and we are praying for those Momma cells to GO!! GO!! GROW!!!

For those of you who are Survivor fans, if you caught last night’s finale, you heard our sweet Ali mentioned by Jeff Probst. Ali’s hair came out last Friday which at the age of 12 wasn’t as much fun as maybe it was the first few times around. Mr. Jeff said, “Don’t worry Ali, your hair will grow back! Hang in there!” What a sweet man who has a heart of gold. Ali’s ANC is at 600 today and she has started engrafting. YEEHAW!! She’s accepting those Momma Nancy cells well.

Tina called last night for quiet time which I LOVED. She said she was actually in our room @ Uncle Ronnie's having real quiet time and couldn’t help but calling across the interstate to share with me. God knew I needed this Tina Time. If you get the chance, read her entry for last night and you’ll know why I enjoyed it so much. It is certainly not by chance or coincidence that God shared an extension of devotional time with Tina that went right along with the verse that God shared with me last Friday. Romans 8:31. “If God be for us, who can be against us?” I have been pondering still over Bro Grant’s sermons last week via speakerphone which also fell right into the same subject that God has been sharing with Tina & me recently. “The Force Called Love” and “Our Actions Showing Love” taken from 1 Corinthians 13. God’s love can never be defined or even begin to find the depths of His love. We can’t even begin to understand it. Some notes that continue to stick out are “Love is patient … it can wait. Love forgives whatever comes along. Love believes, hopes, endures all things … all for the best.” Bro Grant questioned “Are we motivated by love? Do our actions reflect love?” God is love … period. (Bro Grant, I’m still soaking up Dec 5th’s messages. Last Sunday’s was awesome as well but for some reason God has kept this on my heart to share. Thank you for sharing His messages and including us in home-home services! You all cannot know what a comfort it is to close our eyes and feel at our home church.)

Daddy went back on the road Monday morning and it’s just been “us chickens”. Emma Grace may be getting her Momma’s cells but she is definitely Daddy’s Girl. She misses him not being here and is always full of smiles when her Daddy gets back. Barney & Jeff Haynes got to meet up in Minden last night for supper. I know they had a great time getting to fellowship even though the time was short. Jeff will be back in Memphis this weekend and I know there’s a little man waiting to see his Daddy! Hang in there, Jeff – only 3 more days!

Nanna was here Thursday thru Sunday and it sure was nice to have her here. She didn’t leave the 4th floor until Saturday as she had lots of Emma Grace time to catch up on. Needless to say, Emma Grace didn’t want her out of her sight for long either. She barely let her sleep in the parent room because she wanted her to sleep in her room! Thanks for being here Mom! It did everyone a world of good.

Little Jake is recovering well and should get out of the hospital today! Ain’t God so very good?? The doctors have been very pleased with his progress and are settting plans for the next biggy. Jake will have an MRI done on Thursday and we’re praying for everything to be ready for his next phase of surgery. We know it will be just as God has planned … He’s in control, ya know.

Well, I better close and get some shut eye while my little precious is doing the same. Thank you all so much for allowing us to share our heart thru the good and the bad. I never wish for this journal to be negative or even focus on the unpleasantries of Emma Grace’s treatments. We know that God’s plan is perfect and her sufferings are not in vain. The same love that Tina reminded us of in her entry - God is for us. He is for us with unfailing love – the love that was brought to flesh in a manager, that took the path of the cross, to write our names in His Hand is the same love and the same Hand that carries us each and every day. For His glory, not ours. That’s the same Hand that wraps my baby as she sleeps. Thank you Lord, for loving us beyond our understanding.

Only By His Grace – Momma Trish

Happy Birthday, Sis! She's singing with the angels, again beyond my comprehension. I can only imagine ...

Friday, December 10, 2004 5:36 PM CST

Blessed Friday to All!

First and foremost, thank you so much for your many prayers, your precious, encouraging messages, mail, phone calls, love and friendship. It is ever amazing the band of prayer warriors God has sent to battle for Emma Grace and her many friends. God knows our every need and we are so thankful that He has sent us you. You cannot know how you touch our hearts. (NOTE: We have moved to a different room on the 4th floor. It truly is the Penthouse Suite … the room is huge and we are so thankful for the Team working for us to get moved. I have changed the direct phone number below on the hospital info.)

Now … our Emma Grace is resting as we speak. She has been pretty low key since Wednesday due to the chemos & meds getting her “wiped out”. She has been sleeping most of the day as the meds did what it was supposed to. She received the “Momma Cells” last night at 6 pm and will receive another dose this evening about the same time. Though I hid behind the camera, hid behind my smile and even the quiet applause when her transfusion was complete – it was a mixed bag of emotions as I watched my cells going in for battle and recalled the transplant from last year. I just prayed these cells were strong, offensive and would tackle this beast head on ridding it from her little body for good.

Daddy left out yesterday afternoon and is returning back this evening until Sunday. With the week’s events of receiving the G-shots and then the stem cell collections on Wed & Thurs, I am SO thankful Barney was able to be here with us. Bless his heart, not only did he have to deal with his baby girl not feeling so hot but then he had big momma girl to contend with. He said (lovingly, I’m sure. Ha) that Emma Grace was much easier to handle. I imagine he was ready for Nanna to get here to give him some relief! Ha! I’m afraid that I didn’t handle my treatment with dignity and grace like these precious babies do on a daily basis. But we do whatever it takes for our children.

Thank the Lord, we are finished with the aphaeresis (stem cell harvesting) and they were able to collect what they needed for our baby girl. Big PRAISE & Answer to Your Prayers: my first aphaeresis done on Wednesday produced enough stem cells that Thursday’s collection was all “gravy”. The 11 G-shots given since last Friday boosted me up to a whompin’ 34,000 ANC level. (A healthy ANC is usually around 2,000) Gee, no wonder I was a tad on the ouchy side. My bone marrow was packed with stem cells which was exactly the plan. The Team has been very pleased with the amount of cells they were able to harvest. We are so thankful for God’s mighty Hand in this process as well as each step He continues to lead us through.

As I mentioned above we have moved to another room, #4005. It is next door to our dear friend, Miss Ali & Nancy. Ali is doing pretty well but has been battling a high fever which they feel is from the OKT-3 antibody. They started it back in very small doses hoping that she would be able to tolerate it but the fever started up again with the increase. They are starting back with the smallest dose again. Please pray for her ability to tolerate these treatments. Bless her precious heart … as sick as she is, she is concerned about Emma Grace and worried what is going on with her. Now, we are next door to each other so she can keep a St Jude Sisterly eye on her. Her mom, Nancy, has been especially spoiling me with loaning me her heat roll and fixing a special pot of coffee just when I need it most. She is wonderful support and always delivers a much needed laugh. She’s somewhat like me … she doesn’t care if you’re laughing at her or with her. She just loves to share a chuckle!

Dec 9th was a LARGE day of great news all the way around … of course, the big day, called “Day Zero” of transplant for Emma Grace that went very well. Also, Stanton’s lab work shows that his LDH (neuroblastoma tumor marker in blood stream) is decreasing!! Go Stanton!! And Ben Bratton’s scans show CLEAR!!! He also recently had the MIBG tx like Stanton, Ali and Emma Grace. Plus, Christal Reynolds is the proud big sissy of Miss Kylie Hope, 6#14oz. Both Chris & Kylie are doing well and Christal could not be happier that her baby sister has finally arrived. Last and certainly not least, our dear friends Chastity & Travis Schexnayder, Angel Zoie’s parents, found out that they are expecting a baby!!! What a blessing!! I spoke to Chastity last night (who was bouncing off the walls, I might add) and she was so surprised to be sharing such marvelous news. She said that Angel Zoie must have known they needed someone to keep them busy. We are so thankful for all the wonderful news for Dec 9th! Tina and I visited last evening as she called to tell me about Chastity & Travis and we decided that it was just a great day all around.

Little Jake Raborn had his 2nd lung surgery today and is doing well. His surgery is complete and they were able to remove 6 nodules in the left lung. The surgeon felt they were not as “healthy” cancer cells as last week’s removal which is wonderful news. I know Staci, Don and the rest of the Raborn family are so thankful to have #2 behind them. The next step will be surgery on the liver and we know God is already there. If you get the chance to stop by their website, I know they are thankful for your prayers and support. There is a wonderful anonymous friend who keeps adding very touching pictures to Jake’s guestbook. The one today for his surgery will make chills go all over you. You’ll know it when you see it, so scroll back for the “Master Surgeon”. www.caringbridge.org/la/jakeowen

Tina called this morning to let us know that another little friend has gained his wings. Little Aaron Hunter is no longer fighting neuroblastoma as he went home to be with Jesus this morning around 4:30. Please keep Aaron’s family in your prayers during this difficult time. www.caringbridge.org/il/aarondhunter

Well, I need to close for now. Please know that we are ever grateful God’s love shines through you. Thank you for continuing to pray for Emma Grace and her friends. We love you and are ever thankful for your love!!

Only By His Grace – Emma Grace, Eli, Barney & Trish

Again, my "Bedside Blessings" hit the spot ...
"I'm comforted when I realize that God is in sovereign control of all of life. He not only knows the times and the seasons; He is also Lord of the unexpected and the unpredictable. Our times and our trials are in His Hands."

"If God is for us, who is against us?" Romans 8:31

Wednesday, December 8, 2004 11:50 AM CST

TODAY STARTS THE NEW BEGINNING

Hope all are doing well. Today is the first day for Trish to have her stem cells harvested. Today and tomorrow Trish will be hooked up to a machine for like five hours a day. If all goes as planned she will only have to do it twice, if they can not get enough stem cells then she might have to do it a third day. Miss Nancy, Allie’s mom had to do it three days last week, Nancy said the first two days were bad enough but the third day was not fun at all. What they are able to collect today Emma Grace will receive tomorrow. The doctors will condition the stem cells before they give them to our baby girl. They will run the cells thru a machine (the machine that had to have FDA approval) to remove most of the T-Cells. By removing the T-Cells they can control the Graft Verse Host Disease (GVHD). It truly amazes me how far they have come in the treatment options they can do for these children. Thank you GOD for allowing this knowledge to be found. If all goes well once the stem cells are infused they will go to the large bones and set up shop reproducing, growing new bone marrow. Once the bone marrow gets started it will start producing white cells which are the immune system. Emma Grace will become as close to being a little Trish as there will ever be, as this will change her DNA to an exact 100 percent match to Trish. Talk about being scary. Once the immune system (ANC) reaches the magic number of 500 two days in a row the doctors will start weaning her off of some of the meds that she is on. Dr. Barfield said that they will take one med a day away so as not to drop her to fast, and to make sure her ANC is a true reading and not a false reading.
Emma Grace will also start IV nutrition sometime in the near future; once she gets the transplant behind her they will start TPN. This is also a normal side effect of transplant. How long she will be on TPN depends on her. Last transplant she was on TPN for like two weeks. The staff nutritionist will figure Emma Grace’s calorie needs, once she starts eating at least half of her calorie needs a day they will wean her off of TPN. Emma Grace has been trying to eat a little bit everyday. The last two days she has not been able to keep anything down but she still tries. She likes to eat too much not to at least try, kinda like her momma and daddy.
Please continue praying for Emma Grace as she waits for the graft to start producing. Once it starts producing it is amazing how smooth things can get in a hurry. While her ANC is down to nothing, little aches and pains are amplified so we are praying for a fast and an uneventful stay on the fourth floor.
Nothing can compare to the words I just heard, my baby girl is laying here beside me as I try to type this entry. She just rolled over opened her eyes and said, daddy I love you. I can not think of anything else that could sound any sweeter than those three little words. As good as these three words make me feel it still leaves me imagining how awesome it must make GOD feel when we tell him we love HIM. Stop and consider that GOD gave HIS ONLY SON so that we can have eternity if we will just tell him I LOVE YOU with the sincerity of a little baby.
John 3:16 FOR GOD SO LOVED THE WORLD HE GAVE HIS ONLY BEGOTTEN SON, THAT WHOSOEVER BELIEVETH IN HIM SHOULD NOT PARISH, BUT HAVE EVERLASTING LIFE.
I can only say thank you GOD for loving me enough to send your SON to die on the cross for me and my family. I truly cannot even begin to understand the pain GOD has had to endure watching his SON born in a manger, grow up a carpenter, and forced to walk up a hill dragging the cross that HE would die on. As we are going thru the season celebrating the birth of JESUS stop and take the time to tell GOD with the sincerity of a new born baby that you love HIM. What better of a gift could you bring forth celebrating the birth of JESUS CHRIST.
Please remember all of our special friends and there families as the fight continue at St. Jude.
Jake Raborn will have surgery on his other lung this Friday. www.caringbridge.org/la/jakeowen
Staton Haynes two weeks post MIBG treatment, will have all scans done the first week of January. www.caringbridge.org/la/stanton
Chris Kirkman, having a c-section tomorrow, going to have a baby girl Kylie Hope. Chris is the momma of our little sweet heart Crystal Reynolds. http://christalinfo.servemp3.com/

Able To Say GOD I Love YOU
Emma Graces daddy
Barney

Monday, December 6, 2004 2:35 PM CST

Blessed Day To All!

Well, all is going according to schedule here in the Penthouse Suite at The Jude. Emma Grace has been doing pretty well with her chemos and antibody treatment which are doing the job to wipe out her immune system. She has been running fever everyday compliments of the antibody. Dr. Barfield came in Sunday morning to check on Emma Grace, he said that with every thing considered he is pleased with the way she is doing. He also told Trish not to be afraid to take the pain meds she has. The G-shots are making her bones ache; she said she aches like you do with a really bad fever. Trish also made the comment “how can I complain with all these babies have to go thru.”

Saturday we had the pleasure of seeing Christopher Wayne Morris and Miss Shelly. You might recall Christopher Wayne was the recording star that donated his time to do a concert for Emma Grace. They were on their way back to Nashville and stopped in to play for awhile. I arrived as they were getting ready to leave. I ask about the wrecked airplane on the shelf, it seems Emma Grace and Christopher were flying a balsam wood plane in the hallway and having a ball. Lets just say I don’t think either one of them are ready to fly real planes yet. Thank you Christopher and Miss Shelly for remembering our baby girl.

Miss Laura ran a half marathon for St. Jude on Saturday, she actually ran 13.1 miles. I told her I couldn’t run 13.1 feet. She received a medallion for finishing, which she brought straight to Emma Grace. Laura, The King, Dr. Bob, and Laura’s sisters decided that since Emma Grace has to have a bath every 4 hours starting today thru tomorrow evening that she needed more pajamas. The chemo is thiotepa and excretes thru the skin hence the required bathing to avoid causing rash or burning.. Emma Grace has enough pjs to last awhile. Thank you Miss Laura and family for all you do for our baby girl.

There are several groups that bring meals, and fun to the Ronald McDonald House. One of these are known as the Pittman’s, they are here once a month bringing good old fashioned down home cooking, laced with lots of Christian love and fellowship. They were here this weekend fixing dinner when they called the penthouse to see if we could sneak over for a visit. We could not make it so they loaded us up plates full of food and loaded a few of the teenage girls up and came to see us in the penthouse. Emma Grace was thrilled to see the girls that she has played with in the past. Mike and Kay thank you for every thing you do for so many.

This is the big week. Momma will have her stem cells harvested on Wednesday, and Thursday. Emma Grace will have her stem cells infused on Thursday and Friday. Momma will be hooked up to the machine for around five hours each day, a long time to lay still with a needle in each arm. Giving Platlets I have been hooked up for two and a half hours and I thought that felt like forever. Trish you go girl.

Please remember to stop and say a prayer for all of the kids and families at St. Jude. Thank you to all that have took the time to say a prayer and sign the guest book. Emma Grace always ask for me to read the guest book entries to her. She wants to know who signed her guest book anytime I am reading it.

It is truly a gift from God that these Doctors have the knowledge to even attempt to do this type of transplant. We know that God has this all laid out for us, He has everything planned out down to the smallest detail. Thank you Lord for loving us and watching over our baby girl, as I look back over the last two plus years I am reminded of the poem Foot Prints In The Sand. I look back and I can only see one set of foot prints as we truly know that God has truly carried us thru this ordeal so far. We love you Lord and thaink you for loving us as only You can.

Carried In HIS ARMS Again,
Emma Grace’s Daddy

Please remember to pray for all of our dear St. Jude friends.

Jake Raborn is having his second lung surgery this Friday. The reports are good from the previous surgery just completed a week ago today. Please remember this precious little man and his family as they prepare for yet another surgery. If you get a chance to sign the guestbook, we know they would love to hear prayers are being lifted for them. www.caringbridge.org/la/jakeowen

Also, please remember the Craig Johnson Family. Craig went home to be with Jesus the Friday after Thanksgiving. He had battled a rare cancer with many continued side effects from treatment for over 20 yrs and his body just tired. As Emma Grace says, “I’m sorry Craig isn’t here no more but he’s ok, he’s in Heaven and he’s all better now.” Craig was Emma Grace’s most favorite male sedation nurse and gave everything to our children with his unselfish loving, compassionate spirit. We love you Craig and the Jude is a better place for putting your heart and soul being into the Dream Team as you always gave your all!

Wednesday, December 1, 2004 1:42 AM CST

Hello from the Penthouse of St Jude!

Well, Emma Grace has made it well with her first round of pre-regimine treatment for transplant. She is receiving an antibody that is designed to suppress the immune system. Part of the work is done in that department as her ANC (immune system counts) hit the big zero yesterday.

Emma Grace and I arrived to our new "home" on the 4th floor Monday night about 8pm. She had been flirting with a fever all that day and finally meant business before bedtime. She is receiving antibiotics as precaution and so far everything is ok with a focus infection. The fever is just due to her ANC being bottomed out.

She will start a new chemo Wednesday morning and will continue with chemo until next Monday. My G-shot will start on Thursday and they will harvest my stem cells next Wednesday - the same day she will receive my stem cells. They are transplanted "fresh". This whole thing is quite amazing and we are so thankful that God has given us all St Jude to take care of our babies.

The Haynes' went home Monday afternoon for a much needed break. Stanton has done really well with his MIBG tx. The temporary departure was tough to say the least. I don't think Emma Grace realizes that she will not return to the RMH when she is released from here. But we'll cross that bridge when we get to it. Needless to say, Tina & I were fully aware as we enter this new chapter. God will work it out. Enjoy home=home dearest Haynes'!! We miss you bunches already!!
www.caringbridge.org/la/stanton

Little Mr. Jake did really well with his surgery. They were able to remove 6 tumors and they will have the biopsies back on Thursday which determines their next course of treatment. Also, he is supposed to have the second surgery on the other lung within a week or so. Please continue to keep this sweet little man and his precious family in your prayers.
www.caringbridge.org/la/jakeowen

Miss Ali is getting her transplant from Momma Nancy today. Please pray that all goes well for both of them. We have not got to see Ali since we've been up here as she has been pretty "under the weather". In the midst of being quite ill she was concerned about Emma Grace having to go thru this same meds and how she would make it. What a sweet little lady she is.

Well ... gotta run. Just wanted to let you know the scoop. I need to get some rest and sleep while she is. Gotta share this with you first ... I'm headed out the door as the "Little Bossy Princess" has requested jello and apple juice. I get up out of the chair next to her and she says ever so seriously, "You rock on Momma Girl!". HAHAHAHA Not real sure where she got that from but I was touched as the irony of thinking she should be encouraging me. What a little angel she is. Again, God has sent just the right "fuel" to keep me going by allowing a glimpse of His mighty love thru the heart of my baby girl.

Thank you so much for your faithful prayers for Emma Grace and her friends who has touched our lives. We keep praying the "piece to this cancer puzzle" will be found soon. Have a glorious week and again, you are such treasures sent from God. In the words of Emma Grace tonight, when the day tries to get the best of you ... "Rock On". Our Rock is Able!! Keep Looking Up!!

Only By His GRace - Emma Grace, Eli, Barney & Trish

Sunday, November 28, 2004 2:11 AM CST

Greetings to All!

We trust everyone is enjoying their blessed Thanksgiving weekend and getting to spend lots of time with loved ones. Our RMH Thanksgiving was wonderful … it wasn’t home but we certainly got spoiled. Barney made it in around 11:30 just in time. The folks from Saturn dealership of Memphis came with all the trimmings. The tablecloths were placed, tables decorated with our settings, even a menu for the meal with each “price” area noted with no monetary figures only the sentiments of “Our Pleasure” by each item. They catered to our every need by getting drink orders, bringing heaping bowls of food to the tables that weren’t allowed to be empty and the food was grand. The fellowship was even better. These folks, and there were many I might add, gave up their time at home with family to make our families Thanksgiving a very special occasion. Thank you Saturn of Memphis for your generous hearts!!

Well, now I’ve lovingly been nicknamed “Tawonda” from the Fried Green Tomatoes parking lot scene. Just so everyone knows everything has been fairly calm concerning my parking and driving experiences as well as the everyday coping measures. I’m glad that we can all laugh about it … hey, you can laugh at me or with me. You know me, I’m happy either way.

After an exhausting two week marathon of appointments, tests, scans, blood work, you name it, the jury is in and the official word from the Bone Marrow Team is that “Momma is better suited for Emma Grace’s donor”. We got the news on Wednesday so one more step is in place to get this transplant rolling. The primary determining factor was that my sex, age and the fact I do not have diabetes like Daddy. Either of us were pretty close candidates but they were concerned that even the G-CSF injections that I will receive prior to apherisis may mess with Daddy’s blood sugar and they did want to risk that as well. Anyway … that’s the scoop. Emma Grace will go into the hospital on Monday and start her eight days of chemo prior to transplant. At some point during that time they will start me on the G-CSF hormone to boost my immune system to get the stem cells built up to release into the blood stream so they can “harvest” thru the bloodstream. I will be hooked up (a lot like donating blood or platelets) and they will collect the stem cells from my blood stream. This process takes about 5-6 hrs so we are praying for #1 the collection to be plentiful, healthy stem cells for our baby girl and #2 that I tolerate the preparations as well as the lengthy harvest time. Most of all we are praying that this treatment is SUCCESSFUL for our precious girl!! Give you a guess Who already has this worked out??

I’m going backwards and bouncing a bit with this entry in effort to cover the notes I’ve made over the past few days in hope of not leaving anything out. So please bear with me … (you know the routine, drag up a chair and sit a spell.) I’ll try not to get too carried away.

Friday was another very special day as Dillon Wells’ family came in with all the Thanksgiving feast trimmings. So we had another wonderful dinner. My dear Aunt Judy and cousin, Janet, made it to Uncle Ronnie’s house just in time for the home-cooked spread. It is so good to see them! Little Janet (who isn’t a little girl anymore and who I recall taking care of many times when she was a baby) is now expecting a child in May. You may remember when we attended her wedding this past May and Emma Grace was honored as being an impromptu bare-footed flower girl. Golly, that only seems like a yesterday. Time seems to fly faster than I would like to admit.

Another grand day at the RMH is STANTON IS HOME!! He blazed right thru his MIBG treatment in Philly and we picked them up at the airport Friday night at 6:30pm. It seems like ages since they left (ok, I know it was only a WEEK!) but it sure is nice to have them back next door. I think Tina & Jeff could not be happier to get back to our neck of the woods. Emma Grace stayed at Uncle Ronnie’s house with Judy & Janet and waited on “her man” to arrive. When we got to our room Emma Grace was hiding in her Barbie tent with red lipstick on so she could give her Stanton kisses! HAHAHA! It was too cute! One day I will worry about those two! There’s just the indescribable bond between these two that will last a lifetime.

Wednesday proved to be a rollercoaster … we started our day about 10:30 am at The Jude with appointments, labwork, eye appointment, seeing Heather our Clinical Nurse Specialist on the Transplant team and knowing that Emma Grace will probably need blood and platelets. On Monday her hemoglobin was 7.9 and platelets 21 so we were anticipating transfusions on Wednesday. Well, she had fallen to a critical status of 6.4 on hemoglobin and 2, that’s right 2!! for her platelet count. Needless to say, she received two platelet transfusions as well as getting her one unit of blood. We have seen her platelet count fall to 6 once in the past early in her treatment but never this low. We spent the rest of our afternoon and evening in the Medicine Room getting her refueled. Eli arrived around 2:30 pm which was a welcomed sight. He is getting SO tall … getting close to looking his Momma in the eye. Millie and Frank were headed to her daughter’s in Bryant, AR (south of Little Rock) so they brought Eli with them to spend more time with us. We knew we would be getting transfusions so they made the extra 2 hrs to get Eli here for us. Even though Emma Grace had just received her pre-meds of Benadryl she got wound up to see her Eli as well as Millie & Frank. It was only later she gave in to her Benadryl nap. Wednesday was also the announcement of Emma Grace’s donor of which Dr. Barfield came to Medicine Room to deliver that message personally. He is such a wonderful man and we are so thankful to have him on Emma Grace’s team! Well, after a long but much needed day of accomplishments at The Jude, we closed out at 10:33pm. Eli only spent part of the day in there and was exhausted. He commented that he was glad we didn’t have to go back to the hospital. Well, I have to agree I’m happy we got that behind us and got her recharged though I’m convinced those 12 hrs spent were conditioning me to go inpatient on Monday.

We have been so blessed to be having “church in the room” via long distance on the speaker phone with our dear church family back home at Summers Missionary Baptist. I wish that I could fully describe how wonderful it is to worship with our church family or even try to relay a visual of Emma Grace and Stanton singing along with each hymn. There just aren’t words but you cannot know what a comfort it is to have “home” come to us for worship. They even called us on Tuesday evening so we could be a part of our annual Thanksgiving service which is followed by a fellowship dinner. Of course, we missed out on the dinner but it was incredible to be with them and to have the opportunity to give our testimony of thanks over the phone to start the service. We have so much to be thankful for and as Bro Grant mentioned in last Sunday’s sermon we should thank God for all things big and small, good or bad. Most of all, His gift of eternal life. There are many times that our trials can try to get us down and considering our current battle, I cannot imagine trying to walk this journey without God leading us through. Thank you Bro Grant and our family at Summers for making us feel at home-home! We look forward to being there in person when we get this behind us.

In anticipation for another busy week, I managed to stay up most ALL night last Sunday. It was in the wee hours of Monday morning that I was having one of my infamous talks with God. I kept recalling all the steps He had brought us to up until this point - all of which were not steps that were our own. It has only been thru God’s amazing mercy, strength and grace that our baby girl is still with us today. He has carefully planned each and every phase of this journey all the while having the tomorrows in His hand. And knowing my faith is completely in Him, I just needed reassurance that we are making the very best decisions possible for our Emma Grace. So, on the eve of signing yet more consent forms for this new, experimental transplant, I sit, worry and talk. You know … He is the very best listener. In the quiet of the early morning hours and after rereading Bro Grant’s message text from Luke 17, God lead me to my “Bedside Blessings” reading for November 22. (Of course, by then it WAS November 22nd!) His message was loud and clear as the devotional read:
“You do not have to pay the price to grow and expand intellectually. The mind neither requires it nor demands it. If, however, you want to experience the joy of discovery and the pleasure of plowing new and fertile soil, effort is required.
Light won’t automatically shine upon you, nor will truth silently seep into your head by means of rocking-chair osmosis … It’s up to you. It’s your move.”
‘The mind of man plans his way, but the Lord directs his steps. Proverbs 16:9’

Thank you Lord for the reassurance that all the steps are directed by You and the gentle reminder of Who is really in control.

Barney is back on the road as of Saturday afternoon, Eli headed back home to Nanna & Poppa’s with Aunt Judy & Janet Saturday as well. Emma Grace and I are enjoying time with our dear friends before starting this new chapter on Monday. Uncle Ronnie’s house is busy with many loving hands decorating it beautifully for the Christmas holidays. (I don’t think I have ever seen so many lovely trees in one place!!) Aunt Judy made sure that Emma Grace added one more tree to the RMH total as she & Janet brought her a fiber optic tree with Dora & Snowmen ornaments. We turned out all the lights to snuggle and dream with her tree’s tranquil motion. Looking into her bright blue eyes, hearing her bedtime giggles and saying our prayers for one more night - these are truly precious gifts I’m so thankful God picked me to share.

We love you and thank you for your continued prayers for Emma Grace and her dear friends. Just as we are ever grateful for God and His amazing love, we are continuously thankful to Him for you.

Only By His Grace – Emma Grace, Eli, Barney & Trish

Special Prayer Requests for this week:
Stanton who is home from Philly – pray the MIBG tx attacks the beast www.caringbridge.org/la/stanton
Ali Mills who is doing chemo for her transplant Dec 1st. Mom, Nancy, as she is the donor.
Jake Raborn – having surgery on his lung Monday, Nov 29th www.caringbridge.org/la/jakeowen
Madelyn Beamon – improving in ICU and hopefully off vent soon.
www.caringbridge.org/tn/madelynbeamon
Ben Bratton – in hospital with fever since recent MIBG tx

Friday, November 19, 2004 9:26 PM CST

Happy Thanksgiving Greetings to All!

Well, to say the least, the past week and half has been a wee little on the BIZZY side but all is going pretty good. I guess an update is WELL overdue when folks are putting notes on Stanton’s website to encourage us to GIT R DONE!! Well, just rename me Trish “Red Sox” Hampton – slow but sure, but at last we come thru!! (Eh, King??)

Emma Grace is feeling good and going strong. It still ever amazing that she can look so good on the outside yet knowing what is going on inside her precious little body. Just a subnote: the black eye is barely even visible now. I have gained a new wind as I see not only my baby battle this beast but our other babies as well. We pray the information the doctors are gathering with these new studies will put all the pieces to this viscious puzzle together soon and get our little angels well!

Emma Grace will finish her irinotecan chemo on Saturday … Thank you Lord! Her counts have started to drop, ANC down to 200 yesterday and we are not able to give her the G-CSF to boost her immune system until she is off chemo. So we are praying for no fever or infection. Her counts are dropping due to the MIBG treatment as it is just hitting its peak and she is receiving platelets and or blood transfusions weekly now. We are just holding out as the transplant is nearing. Big Prayer Request – that this chemo is keeping the cancer “at bay” until she can get into transplant. Her admission date is still set for Nov 29th with the transplant on Dec 8th. She will receive 8 days of high dose chemo prior to transplant and these are chemos that her body has not seen before. So … we are just covering this whole next phase with many prayers for it to do its job. We’ve got our Battle Britches on accessorized with our Pioneering Boots – which I have envisioned to looking like the Davy Crockett leather type with fringes below the knee. (now, wouldn’t that be a sight!)

Barney & I are still in the discovery / elimination process of their deciding who is going to be the best donor for our baby girl. They have a list a mile long (ok, maybe it’s not that long) of appointments for Emma Grace, Barney & I to get everything completed prior to transplant. The good thing for Emma Grace is that she has recently completed a lot of the scans, etc required. Barney & I meet with an outside physician on Monday who will do a physical, etc and will report to our transplant team. Hopefully, we will know next week who will be the donor. Our dear Dr. Santana was examining Emma Grace on Monday and casually asked if we know who the donor is yet. I answered him with “no but they are leaning towards me. And considering this will change her DNA and blood type to mine could be alarming for us all.” I know he answered with love in his heart, “I’m not sure St Jude can handle two of you!” HAHAHA Surely, he meant that because I am so quiet, calm and sweet!! DITTO HAHAHAHAHA!!!

Emma Grace and I were in the Medicine Room, I believe on Tuesday and she needed to go to the restroom. So off we go, IV pole in tow and go take care of business. Sometimes her mind sets in motion and I never know what the trigger is but she obviously needed to understand a few things. She asked what type of cancer that Stanton has. I told her neuroblastoma. Then she asked what kind Jaden’s cancer is and I told rhadoid. She thought for a bit then replied, “Well, I have neuroblastoma, Ali has neuroblastoma and Stanton has neuroblastoma … we ALL have neuroblastoma!” She almost said as if it was some elite club they were a part of and I should share in her excitement. In my mind I’m thinking, “oh joy, joy, yeah, wonderful they all have the same cancer.” I think she noted that I didn’t do the “happy cancer cheer”. Then she sat there a second, (remember we’re still on the potty), and says very matter of fact like, “Well, some of us have leukemia, some of us have brain tumors and some of us have neuroblastoma.” I’m ever amazed that my 4 yr old has to even know about childhood cancer much less that she has now come to realize there are different types. I have always said these children know far more about cancer than most adults who have never been affected by cancer. It was just a very sincere but heartbreaking discussion with my 4 yr old who is sadly wise beyond her years.

Barney’s new job is going very well. They have been keeping him regionally and working with us on this suddenly hectic schedule. We knew we were going out on a HUGE limb of faith by his coming to Memphis but God has blessed every step of the way. First of all, the company he left at home is fabulous and have been so understanding in the need for him to be here and then for God to direct us to another marvelous company who has that same compassion for obviously extenuating circumstances. That just says a lot for both companies who certainly are confirmed God sends. Ain’t it grand how God just has ALL the details worked out??

Eli is still staying at home with Nanna & Poppa. We often don't realize how very much this whole situation affects him. Again, he has had to make huge sacrifices as well and we just pray for God's comfort and peace to help him thru. Hopefully, with basketball starting that is giving him a new focus ... let's just pray he stays focused on his studies!

Stanton, Jeff & Tina left for Philly yesterday and meet with Dr. Maris today. He will have an MRI late this evening which was needed for pre-treatment assessment. Emma Grace, Jake, Staci, Don & I took them to the airport for the send off. Everyone made it well with the goodbyes except Emma Grace who in turn had Tina & I making quick escapes before it was total meltdown. Emma Grace was not ready for her Stanton to go anywhere without her. Amazing how those two are so connected by such a bond. No matter how far the miles, we are all connected by heart. We are praying for this MIBG tx to get in there and kick the beast in the tail feathers. The whole Philly experience is a bit unnerving but they are in marvelous hands with our friends at CHOP.

Little Mr. Jake is now out of the hospital – HALLELUJAH! – and the CT scan they had done of his lungs shows that they can proceed with surgery. They will have surgery on one lung after Thanksgiving then hopefully, the second lung a few days later. This is the first of surgeries as then the liver will be addressed after the lung surgeries. Our prayer is that the surgeons are able to get everything from the lungs so they can schedule the liver surgery which is the primary site of Jake’s cancer. It metastasized and spread to the lungs which have been the problem all this time. We know God is already there and has everything in control for little Jake and his dear family.

As many of you know, Emma Grace and Tina have “Tina Time” quite often which usually consists of “Beauty Shop” or “MakeOverMommaTina”. I have to admit that Tina is braver than I am where the makeup and Emma Grace are concerned! Ha! These are often priceless, precious moments that none of us would trade for the world. Depending on the mood, Stanton sometimes gets involved with the makeup. It is a hoot!! Tina and I have combined the “Tina Time” to our quiet time when the hours are getting late. I cannot tell you how I treasure God allowing us to share His word and meditations.

With the upcoming departure of the Haynes’, the increasing schedules and approaching transplant with Emma Grace and just being here period, needless to say, the stress level has increased as well. Sometimes laughter has to roll or we would go completely BAZERCK!! We had a situation in a parking lot the other night that first and foremost let me say I did not handle in the best fashion. In summary, it had to do with Tina & I parking the big red truck far enough away that we could negotiate getting in and out easily. Of course, someone parked right on the line, on top of us and knowing I’m not the smallest of ladies, I had to carefully position myself to climb into the big red truck. Unfortunately, I did bump (NOT BANG, SLAM, OR DING) just bumped the vehicle next to me. As I was backing out a young lady (and I will say that with sarcasm as she needs to go back to the School of Manners) rolled her window down telling me I had damaged her daddy’s truck. After the “back & forths”, she ended up getting out to get my license tag number and screaming at us. Ok … this is getting crazy already right??? Well, trust me it gets worse … she gets back in her vehicle and oh, did I mention she’s about a size 2?!?!?!?! When she gets in she starts swinging her door into the big red truck like she’s going to door slam it. Anyway … it all got way ugly from there to the point that I acted such a fool like I was going to ram the back of their vehicle with my big red truck. OK!! I’VE TOTALLY LOST IT NOW!!! As most of you will agree, but I actually did leave even after the little twit got out and kicked the front of my truck. Now, it’s Tina’s turn to vent and she let this gal have it with both barrels, rattling off their plate number, reiterating many times over there is damage now and they would receive the bill! OH MY!! It’s strangely relative to road rage … but have you ever heard of parking lot rage?!?!? I can tell you when it hits Webster’s you will see a picture of Tina & I right beside the definition. Now, let me say this … messing with two women twice, ok three times your size isn’t ever a good choice not to mention messing with Mommas who have children with cancer. That’s just a whole level of stress you really don’t want to unleash. At some point, their rubber bands are going to pop!! Our accumulative anger and frustration turned to hysterical laughter within seconds of driving away from the whole goofy scene. It was then we knew we were going to be ok and not actually explode. Laughter is always good medicine even in the strangest of situations.

Aren’t you glad I summarized the whole silly scenario?? And you can only imagine how long it would have been had I listed all the details. HAHAHA First, it was not and I repeat NOT the example of how two grown Christian ladies should have acted and for that we have already asked forgiveness. Secondly, we are so thankful for the learning experience of how NOT to act the next time placed in a similar situation and lastly, we have learned to try to laugh BEFORE an explosion is about to erupt. It’s so therapeutic. Ok… I knew I could not do a journal entry without including our St Jude Moms Gone Nutz outing in the parking lot as too many folks have already been enquiring from Tina’s tidbit entries about our memory making excursions. Don’t you know that God was just shaking His head saying, “Girls, Girls, Girls, have I not taught you ANYTHING?!?!?”

Now … you know the whole red-faced deal. I’m sure it will be something that we will have a hard time living down for quite sometime. And in saying that let me just say, have you ever done something really stupid that you wished you’d had more time to evaluate and hoped you’d made more intelligent choices?? Well, I’m sure that’s not my first mistake and nor will it be my last. God made us in His likeness but we are not perfect. I’m so thankful for a loving, forgiving God who knows our weakness. Tina and I did learn from our Parking Lot Rage as God’s timing is always perfect and in my Max Lucado’s “Grace for the Moment” devotional on Nov 15th here’s what it read:

“FIX YOUR EYES UPON JESUS – ‘May He enlighten the eyes of your mind so that you can see what hope His call holds for you.’ Ephesians 1:18
What does it mean to be just like Jesus? The world has never known a heart so pure, a character so flawless. His spiritual hearing was so keen He never missed a heavenly whisper. His mercy so abundant He never missed a chance to forgive. No lie left His lips, no distraction marred His vision. He touched when others recoiled. He endured when others quit. Jesus is the ultimate model for every person … God urges you to fix your eyes upon Jesus. Heaven invites you to set the lens of your heart of the heart of the Savior and make Him the object of your life.”

Ouch! Ever went to church to have your pastor step on your toes because you felt guilty for actions that are the very subject he happens to be preaching on? Ever wonder if God whispered in your pastor’s ear, “Hey, ole Trish has been doing this and this and that … preach on this and she’ll leave with toes so sore she won’t be able to make it to the truck.” Better yet, He hopes we’ll leave with sore knees as we have come with repentance and humble hearts. He knows we are so very human and will stumble. Sometimes it takes His Word, His Perfect Timing and His Unfailing Love to remind us how very much He loves us and wants us to do better – not for us but for His glory.

In the midst of realizing our mistake of handling that whole situation, we were also reminded of the laughter that just seemed to cleanse from our head to toes. Our “Bedside Blessings” book by Charles Swindoll on Nov 17th says this which again was quite appropriate for us both.
“Personally, I think a healthy sense of humor is determined by at least three abilities:
The ability to laugh at our own mistakes.
The ability to accept justified criticism – and get over it!
The ability to interject (or at least enjoy) wholesome humor when surrounded by a tense, heated situation.
‘A joyful heart makes a cheerful face.’ Proverbs 15:13”

Well … I’m going to close for now. In the time I have started this update (which was around 7 this morning) have received two more requests to “GIT R DONE”. So, I guess I better do just that. We thank you all so much for your many encouraging notes on the website, the phone calls, the notes in the mail but most of all for your loving friendship and prayers. We know that had God provided us with very special folks to walk this journey with us. There isn’t a day that goes by that we don’t think of the many blessings of compassionate and generous family & friends and we lift you up in prayer, ever grateful that He sent us you!!

Thank you for your continued prayers for Emma Grace and her many dear friends who bravely fight this beast with a smile on their face and a song in their heart!!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

If you get a chance, please feel free to stop by some of our dear friends to send a word of encouragement. You cannot know what it means to read just a word or two knowing how very many people are praying and care. Thank you & God Bless you all for a wonderful Thanksgiving!

www.caringbridge.org/la/stanton - treatment in Philly Nov 23rd – please pray for Tina & Jeff as they travel this new journey in our home-away-from-home-from home. Also, that Stanton will handle having to stay confined to the “glow in the dark” bed and the radiation level will decrease quickly for release on Nov 25th.

www.caringbridge.org/la/emilie - just finished 3rd treatment at LSU Cancer Center

www.caringbridge.org/la/jakeowen - as they prepare for upcoming surgeries

www.caringbridge.org/tn/madelynbeamon - back into ICU with serious problems

http://christalinfo.servemp3.com – joyous over clear scans, remember Momma Chris who will deliver in about 3 weeks.

www.caringbridge.org/sd/shiloh - went home for 5 weeks and will return for 5 months of continued treatment

www.caringbridge.org/tx/christopher - our friend we met while on the RMH trip to San Antonio. Christopher is back in the hospital and has been having complications.

www.caringbridge.org/tx/tate - another little friend we met @ RMH trip to San Antonio. He was born without the left side of his heart and is having a major surgery Nov 23rd

www.caringbridge.org/il/zoejowolsfeld - so far her scans have come back clean! Still in remission

Dillon Wells from Kansas who is battling recurrent brain tumors. They have started a new chemo which we are praying is the one that beats the beast.

Our Miss Ali Mills, 12 yrs old who has been in the neuroblastoma battle for 7 yrs now, is going into the hospital on Nov 22nd for her transplant like Emma Grace is having. Ali will be the first neuroblastoma child to have this transplant at St Jude. Please remember her dear Mom, Nancy, who is Ali’s donor. Looks like we all will be spending December on the 4th floor.

Our little friend Cheyenna McKee from Barnsdall, OK who has p-net brain tumor. Cheyenna has stolen our hearts especially when she says with such enthusiasm “God Loves Me!! God’s in My Heart!! Cheyenna has a new baby sister, 2 wks old today, named Sydney. Please pray for them as their plates are full and for Cheyenna’s continued treatment.

Ben Bratton, neuroblastoma buddy, who is about 2 weeks out from his nuclear treatment in Philly. Ben is from Tupelo, MS.

Also, a new family Brent Nason, who is 12 I believe with neuroblastoma. They are from the Starksville, MS area. Brent has been doing well with his treatment and has been able to be out of his wheelchair more this week.

Prayer request that I can channel my anxieties and stresses in a more positive and productive manner that allows God's light to shine. Until then, I'm parking in two spaces sideways next to the road to avoid conflict!

I know there are others that I have failed to mention but God knows each and every one of our children. Thank you again for your faithful prayers!! Love ya’ll!!

Tuesday, November 9, 2004 9:23 AM CST

Greetings to All on this Crisp Fall Morning!

As if the teasing and promptings for timely journaling were not already present, now the bar has been raised. Barney has been doing a wonderful job sharing his heart and I got spoiled to him being here taking care of the updates. He is currently in Minden, LA doing driver orientation at Shreveport for Tango Transport. They have a terminal in West Memphis which is hopefully, the game plan for him to be based out of while we are here.

So … if I were to start out in with a theme for this entry it would have to be “WOW!! LOOK AT ALL THE BLESSINGS!!” Many of you would say I have lost it (which could be easily diagnosed! Ha) considering we are here still and are likely to be here for quite sometime, literally moved to Uncle Ronnie’s house putting everything at home “on hold”, and of course, we’re battling the beast full steam ahead. Once again, I have been reminded that priorities change and we are doing whatever it takes to get this cancer beat in the britches and sent packin’!! Regardless of how we have things planned, God is already got everything – EVERYTHING – in full control and is in every detail, big or small. We are so thankful for His mercy, guidance, strength and most of all, His love which is like none other.

So, let’s start with listing just a few of those many blessings He is so graciously sending. My heart is full so that means you may have to bear with me as you know I could ramble a bit. (Gee, I would hate to let you down! Ha!)

First and foremost, God has provided us with a game plan for our Emma Grace. I met with Dr. Santana yesterday and she will start on chemo today. It is the irinotecan that we used when she relapsed. It proved to hold her stable and that is our goal to keep anything from progressing prior to transplant. She will go into the Medicine Room each day to receive IV chemo for 5 days, 2 days rest, then 5 days of chemo again. He felt that we should be able to get one round in prior to transplant which is currently set for Dec 8th. She should be admitted on Nov 29th to start the pre-regime chemo then transplant for the 8th. I meet with Dr. Barfield, transplant doctor, on Wednesday to give more medical history on Barney & me as we have yet to determine who will be her donor. With the huge relief of God’s blessing in expediting the review board and FDA approval this puts the wheels in motion. That’s just God … period! I told Dr. Santana yesterday that I love having a game plan and he wholeheartedly agrees. As nerve wrecking as the past few weeks have been, I feel God is just laying the steps in front of us to follow and there is no looking back. I’m thankful for the peace God is giving us in these difficult decisions.

The “paci issue” … well, let’s just say isn’t even an issue. Hallelujah!! Thank you Lord!! And the black eye issue … well, let’s just say it is mending well. The knot on her forehead is going down and fading to pale greens, blues & purples. And she looks less like Petey off the Little Rascals than she did earlier in the week. All rough and tumble she is!!

As I have already mentioned Barney has found work with Tango Transport which has a terminal in West Memphis. It required him to get HazMat on his CDL so Barney got the study material and not only did he get the HazMat test passed, he took the Doubles / Triples and the Tanker tests as well and passed them all. Way to Go Barney!!! God’s hand has shown in a mighty way as we obviously were a bit nervous to say the least, in leaping out on this limb of faith. I actually did the initial interview in meeting Mr. Gorman, the Owner and Mr. Buckner, Safety Director of Tango when Barney had went home prior to coming back to stay. I have to say, I have contributed from time to time on helping find work, especially when we had our own rig, but don’t believe I have actually done a first interview for him before! Ha! They are absolutely marvelous folks who Todd Dubose (Emilie’s dad) and Jeff Haynes know as Tango is originally a Minden based company. And Mr. Gorman goes to church with the Dubose’s. We’re pretty partial to the Minden folks as if you didn’t already know. So are you seeing God’s blessings and direction in each step of this so far?? Amazing, is it not??

As mentioned in previous entry Mr. Stanton’s stem cells that were tested are CANCER FREE and they now have an official date for MIBG treatment in Philly on Nov 23rd. WHOO WHOO!! Another game plan is in place. The Haynes’ are getting geared up and doing pre-tx scans next week. Do you think that Philly will be the same now that The Hampton’s, The Bratton’s and now the Haynes’ are gracing there fair city?!?!? We are so thankful God is leading the way for the next phase to be in the works for our Stanton. Please be in prayer that all will continue to roll along and especially for Jeff and Tina as they get all the details worked out to fly out and stay in Philly.

We had a wonderful weekend as Nanna, Bubba Eli, my niece, Danielle and her friend, Kristina came to visit. Plus we (the Haynes' but notice how I included "we") had Meemaw, Weinie & Bubba Hayden come for the weekend. Talk about the H & H families happy, happy, HAPPY to have them all here! We had a grand time. Nanna & Eli got to stay until Monday as Eli was out of school so we really got an added treat of spending much needed time with them. It seems like forever since I have seen Danielle and what a blessing to get some Aunt Trish time in. Now, that’s my take on it … I trust Danielle felt the same way. We took my St Jude Sister, Tina along for an afternoon Girlz Outing as it could not have been complete without her. Emma Grace was in hog heaven getting to spend the night in the hotel with “the Girlz” Nanna, Danielle & Kristina while Bubba stayed with Barney & I. I think Bubba enjoyed getting some time with Daddy & Momma time as well.

Saturday morning was the start of a weekend we had been waiting for … the Schexnayder family came from Lafayette, LA to visit, bring a WHOLE TRAILER FULL of supplies for Uncle Ronnie’s, gifts for the kids and fixed breakfast on Sunday. Barney and I saw them pull in around 8 am and I chased the rig from one end of the RMH to the other until they finally parked by our kitchen. It was so good to see Chastity, Travis, Jane, Calvin and the whole Zoie’s Angels crew. I cannot even imagine how difficult this trip had to be for them but they are amazing folks who were determined to make the trip and how very precious time was spent with them. They brought a beautifully framed picture of Zoie with a story of her and her angels while she graced us here on earth. They hung it in the Meditation Room which will always remind others of her bravery, her complete faith and trust in God. It was so hard to see them here without our precious Zoie but we all felt Zoie was here with us in spirit subtlety making her presence known. Thank you all, Zoie’s Angels, for coming to bless our hearts with your love & strength that comes from God!! We love you!!

Saturday evening the Pittman’s came to bring a wonderful supper and fellowship. As great as the food was the fellowship was awesome! We met some new folks from Tupelo that had never been here before with the Pittman’s and we had a great time praising God in the Meditation Room after dinner. Jesus says in Matthew 18:20 “For where two or three come together in My name, there am I with them.” Well, needless to say, God was in the midst for Praise & Worship Saturday night! We had a great time in song, scripture and prayer. We always look forward to the Pittman’s and King’s coming as they always have Worship time with us. Once again, we were reminded how very blessed we are to have such wonderful Christian friends to worship, encourage and continuously lift our families in prayer.

Sunday was a day of really high emotions with Zoie's Angels being with us then leaving, Barney left with Linda, James & Hayden. It was just a tough day and noon hadn't even hit! We needed an emotional low so the rest of the afternoon was spent with Staci & Mo - Mr. Jake's Momma & Auntie. Some of you know that I have started making hemp necklaces with the St Jude medallion. It's been great therapy. And holy cow! I did not know there were so many cool beads!! Well ... Mo drug her suitcase to the dining room for "Bead-A-Pa-Looza" as they called it. I'm telling you Mo only brought a fraction of her collection and I was in the "bead zone" for HOURS!! She & Staci have some really cool stuff and we had bead therapy combined with lots of laughs. Nanna joined in on the crafting fun but we never quite got Tina as excited as we were about all the possibles!! HAHAHA! We don't call her the PrimaDonna for nothing. Double HAHAHA!!

If you hadn’t already gathered, my heart is overflowing in the strength, mercy, grace and love God is sending our way. I’m ever amazed that God is in EVERY detail – not just some, or the big ones, the small ones but EVERY detail. We know that our current situations are but a blink of an eye in God’s timeframe so we are just hanging onto His mighty, loving hand to carry us through. We are forever grateful and thank God for sending us you, our family and friends, who are so faithful to pray and walk this journey with us. We love you and ask for God to continue to send His blessings on you!

“How great is Your goodness, which You have stored up for those who fear You, which You bestow in the sight of men on those who take refuge in You. Praise be to the Lord, for He showed His wonderful love to me …” Psalms 31:19, 21

Only By His Grace – Emma Grace, Eli, Barney & Trish

PS…Please remember Chris, Christal’s mommy, who is nearing her due date Dec 9th and has been having some blood pressure issues. Doing better now and is back to work for now. Oh by the way, did I mention she is having a GIRL?!?!?!? (Don’t you think Kylie Hope is an absolutely BEAUTIFUL name?!?!?!?!?!? love ya Drewie!)

Also, our little Sarah Claire had surgery on her ear last week as the top portion kept getting infected from her slapping episodes. She is doing much better now. Please continue to remember her and her family who continue to face Sarah Claire’s challenges with grace and strength that comes straight from the streams of Heaven.

Little Mr. Jake Raborn is in the hospital with fever due to line infection. Jake has a liver tumor called hepatoblastoma, stage IV, which had metastisized and spread to his lungs. He has been fighting a fungus in his lungs for some time now. Please pray the meds he is receiving twice daily is getting rid of the fungus so they can proceed on with his surgery. CT Scan is Nov 17th to see how he is progressing.

Little Miss Madelyn Beamon and her family stay heavily on our hearts as the bone marrow transplant did not work. She will be starting a new chemo in a couple of days.

Miss Zoe Jo is here doing followup scans/tests this week. Please pray everything shows clean, clean, clean.

As always, all our little friends who bravely fight this beast we call cancer. We pray for the day when it will be a thing of the past for everyone and the battles are ended with the war won!!

http://christalinfo.servemp3.com
www.caringbridge.org/la/stanton
www.caringbridge.org/la/emilie
www.caringbridge.org/la/jakeowen
www.caringbridge.org/tn/madelynbeamon
www.caringbridge.org/il/zoejowolsfeld

Friday, November 5, 2004 7:21 AM CST

THANK YOU LORD

As many of you know we have been waiting on approval from St. Jude as well as the FDA before we could continue with the transplant. Dr. Barfield emailed us yesterday afternoon, below are excerpts from his emails. The first one was received at 3:10 pm; the second was received at 3:32 pm. It is awesome news; we knew that it had to approved by St. Jude before it went to the FDA. We also knew that it could take 2—3 weeks for approval from the FDA, needless to say there was not a dry eye in our room. Thank you LORD for answering prayer, we love it when the LORD shows up and shows HIS awesome power at work.

3:10 p.m.
A couple of minutes ago I received notice that the IRB approved the
Treatment plan I wrote for Emma Grace. Joe Mirro (chief medical officer) has also approved it. We will send it off asap to the FDA

3:32 p.m.
our FDA coordinator just got off the phone with the FDA and
they have also approved the treatment plan

Thursday, November 4,2004 8:52 AM CST

STABLE WILL WORK

I have just finished reading an email from Dr. Barfield (transplant doc) that Trish has not read yet. It all boils down to the simple fact that they are still not sure who the donor will be. Blood test did not exclude either one of us, but there are still several other factors that come in to play. Medical history, even blood vein size of the donor plays in to the decision process. He did say that we need to sit down for a face to face powwow soon.

We finished scans today. Dr. Santana, called Emma Grace “STABLE” He said that the tumor markers that they look for where reduced this week. He also wants to wait until the first of next week to see if she gets excepted into one of the two Phase One studies he has applied for. If she does not get excepted than we will start her on the same chemo that she was on before we went to Philly the first time. He said that if the transplant team could get her into transplant with in 3—4 weeks than we would take a wait and see approach. He left us and went straight to the transplant board meeting, to find out that she is a December transplant patient. Not sure of the dates yet. December will work for us. That just means we will do a round of chemo between now and then.

Emma Grace is doing great with out her paci’s, she ask for one on Friday, I looked at her and ask her what happened to her paci, she laughed and said silly me I through them in the river. She ask again on Sunday with the same answer. Yesterday was the real test as she had heavy sedation meds to wake up from. She ask for one as soon as her eyes started to open, I ask her where her paci was and she hollered I want my silky. We traded paci’s for silkies, her first silkie was a gift from Stanton as he was so proud of her. Tina’s grandmother made Emma grace a bunch of silkies, we received them yesterday. A silkie is a piece of material sown into a square. Thank you Grandma Miller.

We had a good time getting to see Chris, and Christal this week. They where here doing scans this week as well, Chris was bouncing off the walls with happiness last night as she was given an all clear report. There is nothing slowing Christal down but her mommy. They flew home today to Tampa, arrived in time to take Chris to the dr. to day for an ultrasound. They finally found out that she is going to have a little girl in about 6 weeks. I guess that means in February we will get to meet the addition to there family.

The Dubose family, are here this week as well, they placed a port in little Emilie on Tuesday. She had her first round of chemo yesterday, as far as I know she did well with it. We checked on them before we left the hospital yesterday afternoon, then Tina checked on them last night. Be sure to remember this family in you prayers as this was the beginning of an eighteen month protocol. Emilie has a web sites set up at caringbridge, I will put the link at the bottom with all our other special friends.

Jeff and Tina have a huge PRAISE report; Mr. Stanton’s stem cell sample came back clean, free of disease, no cancer cells. This makes Stanton eligible to go to Philly to do the big MIBG treatment. If you have been following Stanton you will know what a major hurdle this has been. All I can say is Thank GOD we have such an AWSOME, LOVING, AND CARING GOD. Thank you LORD for being there when we need you! Stanton and Emma Grace are being there usual sweet selves. The other day Stanton was with us and he looked at Trish and told Emma Grace, your momma has white hair, Trish is my momma. Emma Grace didn’t care as she thinks Tina is her momma anyway. I am just thankful that they feel the love that is there for them.

Please remember all of the other family members that cannot be here with there loved ones. I know Hayden, and Eli are having to deal with a lot. They both stay with there grandparents. They have both had to adjust their life while there brother and sister are away from home. Hayden and Eli, we are all very proud of you, you both have had to grow up faster than you should have to. Shelly be sure to hug the kids and tell them we love them. Dustin, have a good day and know that we love all of you even if we don’t mention you all the time.

Special Prayer List

Arin McIntyre doing scans for a spot on her liver. She has had treatment for a wilms tumor in the past. Friends of Mimi Sharyn and Miss Monica from Cleveland, Ms.

Stanton Haynes getting the game plan lined up for Philly trip. www.caringbridge.org/la/stanton.

Zoie’s Angels as they are returning to Memphis for the first time since Angel Zoie earned her wings. They are bringing wish list supplies for the Ronald MacDonald House, as well as fixing breakfast for the house on Sunday. We are looking forward to seeing them but we also know that it is going to be an emotional trip for them.

Emilie Dubose as she has started a long journey. www.caringbridge.org/la/emlie

Emma Grace as we shift gears and start this next phase, as we are stepping into uncharted waters, please remember to pray for the doctors making the decisions affecting her life.

Madelyn Beamon she has had a transplant that shows no improvement, still has active tumors. www.caringbridge.org/tn/madelynbeamon

Alie Mills, 12 year old, relapse neuroblastoma; she has been fighting NB for seven years, doing her transplant on Nov. 21(same type of transplant that we are gearing up for)

Tonya Kimbrough, friend from home the doctors found a spot either on her lung or her liver. Not sure which one as of yet, the doctor wants to wait until February to recheck, said it might be scar tissue, just not sure at this time.

Thank all of you for the prayers that you lift on our behalf every day. We know that we are here today because of answered prayer. We are promised GOD’S PERFECT LOVE, What more can we ask.

Standing in God’s Perfect Love
Emma Grace’s daddy

Saturday, October 30, 2004 2:52 PM CDT

OK ... Everyone has to be wondering because I can almost hear you all thinking "HOW'S EMMA GRACE DOING WITH THE ABSENCE OF HER PACI?!?!?!" Thank the Lord!! She only asked for it on Thursday while she was getting blood and platelets!! Friday, not a word and here we are on Saturday ... still NOT A PEEP ABOUT THAT STINKIN' OLE PACI!! WHOO WHOO!! She is such a big girl and we all know how strong-willed she can be (which often presents more like 'bullheadedness' ha!). She just made up her mind and she's done. It's all by the grace & strength of God shining thru her and we learn from our children daily.

There are many, many things that we are thankful for and I'm not always good about acknowledging them as I should. First, I am so thankful for God's love, mercy & grace. It is hard to fathom how much He truly loves us. It has been an usually struggle and strain these past couple, three, four or more weeks. It never ceases to amaze me that God sends someone to our side whether via in person, via phone, email and especially, in prayer. We say it often but never enough or the true clarification is impossible of how our hearts feel for you. Just know that we love you and thank God always for being so gracious in sending us such wonderful friends and family to "grab the rope" and pull with us.

While in St Jude the other day I found a very special plaque, by a very dear lady of whom we never had the pleasure of meeting - Linda Hajar. The resource center, where we used the computers to originally set up Emma Grace's website, is in memory of Mrs. Linda as she passed with cancer 3 yrs ago. Of all the times I have been in and out of there and looked up at her picture grateful for all she & her family has accomplished for St Jude, I had never truly read the words on this plaque. Obviously, God wanted me to read it when He knew it would touch my heart most. And in thinking of you all, it is most appropriate for our feelings for you.

"We are, each of us angels with only one wing; and we can only fly by embracing one another."
Luciano de Crescento

Thank you ... we love you!
Only By His Grace - The Hampton Crew

THURSDAY, OCT 28th:

SHORT & SWEET UPDATE FOR A MONUMENTAL EVENT AT THE HAMPTON HOUSE!!! As most of you know, Emma Grace is quite attached to her "paci" and when she was diagnosed in 2002 we gave up & in and decided we would worry about that vice later. Well, I had even decided that we would tackle the paci issue again around Jr. High or so because it really didn't matter to me. Besides, I figured it would be a good boy deterance. ha! WELLLLLLLL NOWWWWW ..... Emma Grace had other ideas and today she & I were waiting in the truck while Daddy was fueling and she said, "WLet's go throw awll my pacies in the Mississippi River because I'm 4 yrs old now and I don't need no pacies!" Well, ya coulda knocked me over with a feather (most of you all know that would be quite a feat! ha!) So, before she had time to change her mind, we called the Haynes' to accompany us for the main event, we got her labs done (which had to be done at 2 pm of which she is in the middle of getting blood and platelets as we speak but doing very well), we went back to Uncle Ronnie's to gather up the other 11 pacies in the room & The Haynes' then we headed for the Mississippi River out north of town for this grand event!! It was a GORGEOUS DAY and we had extra excitement in the air with the whole paci thang! Besides the kids felt great and there's lots of pebbles that need to get wet by chunking them in. Tina was loaded with the camcorder and I had the still shots covered. She got her last "bite" off of each and every one of them, told each one she "wloved them but sorry I don't need you no more". We even said a prayer thanking God for letting us have the pacies all this time but Emma Grace just felt she was getting too big for them now. She and Stanton had a blast throwing them in the river ... all 12 of them!!! We had figured that the catfish babies may be needing a "bite or two" off of her pacies and that is very sweet to share. We even made up a silly song about her being such a big girl, not needin no stinkin paci no more, and we're so proud of you ... doo dah, doo dah ... Anywhooo, just had to share this with you as you all know how attached she has been to her paci and it was a battle we just chose to let go for awhile. You might want to say an extra prayer or two for her comfort during this transition. (Ok, throw a few in for MOmma & Daddy as well .... PLEEEEEZZZZ!!!) Well, we'll see how we fair. Oh and please don't forward this to the Game & Fish Commission as I am quite certain we were breaking a rule or two!!!! You know, "whatever it takes" sometimes to give these babies their wishes!! Jeff & I said we would much rather be having a "no more chemo" or better yet a "no more cancer" party but we thank God for giving us a wonderful day to share with dear friends in our "No More Paci Party".
Love ya'll and we thank God for you always! (Hey, Daddy needs to update more often, don't ya think?!?! I thought he did a grand job yesterday!! Love ya Honey & Thanks!) PS ... If you see another update later tonite, you'll know the night was long on going to sleep without four pacies around us!!! ;)

DADDY's ENTRY FROM WEDNESDAY:
Hope all are doing good.
Just a short update to let everyone know we are doing good. As of now we still don't know who the donor will be. All we can tell you is maybe sometime next week the drs. will let us in on there little secret. We visited with Dr. Santana out side for a minute today. He said all scans are still set for next week, and that we would start some kind of chemo (not sure at this time what type it will be) the next week. He also said that we were at least a month out on the transplant. Just keep praying that all goes well.
We had a wonderful time getting to know Dr. phillips and her sister Karla, and their mom Pat, yesterday. They are from Minden La. Dr Phillips is Stanton's dr from home. She is a very gifted and caring person. Emma Grace didn't want the day to end. She had a ball playing with Miss Karla. I am not sure which one was the bigger kid.:)
Stanton is doing chemo this week. Please remember him and his momma and daddy in your prayers.
From my understanding Emilie is coming back this next sunday. She will have her port placed on Tuesday, and start chemo from there. It is a long road ahead for her momma,and daddy,and her, as her protocal calls for 18 months of chemo. Lift this family in prayer as this is a very scary time for them.
I remember how frightend we were when we started at St. Jude just over 2 years ago. As a parent you can never forget that fear. I also remember one comment that was spoke to us that first evening. One of the nurse told us "I hope you came expecting a miracle because St. Jude is here to help make miracles happen." From the very first they let us know that God was in control and that they were just doing what He led them to do. We are still treated the same way today as we were when we first walked thru the doors on Oct. 13, 2002.
Its very hard as a parent to just turn loose and let God have all control over this situation. We have a tendency to want to try to fix things our self, when we try thats when things seem to go wrong. When we look at the sand and only see one set of foot prints that when we know things went as God wanted them to go.
Please remember to pray for all the drs. and nurses as well as all the children here at St. Jude.

Safe In His Arms
Emma Grace, Eli, Trish, and Barney

Wednesday, October 20, 2004 1:01 PM CDT

Hey Crew!

First off, just to let you know … I have not been trying to avoid you or keep you in the dark about Emma Grace and her treatment plan. I’m sorry as now it is Wednesday and we met with Dr. Santana & Dr. Barfield late Monday. There are times (and it seems to be more often than not lately) that I’m not sure what to journal AND if what I enter will let God’s light shine as it should. It’s these times I really have to “soak in” the situation, keep quiet and let God speak to me in His gentle ways. Does that make any sense??

So, in saying that, I’ll continue … Barney & I did meet with Dr. Santana on Monday for our game plan consultation. Dr. Barfield, who is in the Bone Marrow clinic (key person I will relay later in my journal), came by to introduce himself and let us know he is here for us and will be working with Dr. Rupert should we decide to go the route of transplant. Ok ... so I am getting ahead of myself. Dr. Santana wanted to know about our information gathered on Friday from Dr. Rupert and how we felt about it. Dr. Rupert explained to us on Friday that he recommends doing a very new, experimental transplant that is considered immunotherapy. It is referred to as “reduced intensity transplant” or HLA haplo-identical bone marrow transplant. Our understanding is in layman’s terms, the bone marrow or stem cells Emma Grace would receive are from either Daddy or Momma, not using an unrelated donor which requires a 6 out of 6 matching. Basically, she receives a conditioning regimen of chemos to wipe her bone marrow out then replace with fresh stem cells harvested from either Daddy or I. St Jude has done 25 leukemia patients, 1 neuroblastoma (NB) patient with the 2nd neuroblastoma patient, our dear friend, Ali, who is already scheduled in the near future. They have seen reduced tumor activity especially in the NB patient that was done 3 months ago. So … it is obviously in very experimental stages and could be pioneering treatments for the future should it prove successful.

Dr. Santana listened patiently to our concerns and then gave his “take” on what he feels will be best for Emma Grace. He explained there are about 6 or 7 Phase I studies open, if Emma Grace meets the criteria for them. We already know that 4 are not an option due to her ANC, platelet dependency and one was in Philly with Dr. Maris. We adore him but want to stay at St Jude with our Dr. Santana. We all agreed that her body does not need to see some of the same chemo that it has already seen in the past as it could build up an immunity to it – irinotecan for one. So, he is checking to see which study is still open and which chemo she meets criteria. He feels strongly that we cannot let progressive disease take hold again and we are going to have to assume that the recent MIBG tx will not “hold her” just as the first one did not. So, rather than wait 6 wks post MIBG tx to do scans, Dr. Santana said he wants to do them in 4 wks – Nov 1st & 2nd. Then she will start on a chemo (not sure which one yet) to try to keep any progressive disease from rearing up again. We did decide to do the transplant that Dr. Rupert & Dr. Barfield explained to us utilizing either Daddy or I for her donor. They have already taken blood samples from us on Tuesday to do the extensive, complex testing of who it will be. Basically, they are looking for the parent that has the most “killer cancer cells” in their body to attack Emma Grace’s cancer. And if I’m correct in my understanding, this is considered the “graft-versus-tumor effect”. It will change Emma Grace’s blood type as well as her DNA to the decided donor parent’s type.

So … the official word and schedule in a nutshell is - bone marrow biopsy, CT Scan and MIBG scan on Nov 1st & 2nd. Do some sort of chemo (possibly Phase I study) to try to keep the cancer at bay while the wheels are in motion for doing this new transplant. (It takes about 3-4 weeks alone to get approval from FDA to use the complex machine that removes the t-cells from a parent’s stem cell. Since this is not a protocol yet, there are certain “hoops” to jump thru to get things rolling. Also, they are in the process of testing which parent best fits for our baby girl’s transplant.) So … lots to happen and we are praying everything rocks right along to get things rolling. These are incredible folks who God has gifted with their mega intelligence and are on the same mission we as parents are – to get our babies well!!!

WHEW!!! THAT WAS A LOAD TO ‘SOAK UP’, EH???? If you think it was hard for you to grasp by just reading the above, imagine if you would have been sitting in that room Friday & Monday with Daddy & I trying to decide, surveying the options, benefits/ risks and praying all the while that you’ve decided what’s best.

I have to tell you that knowing we have options is a blessing and it’s like Dr. Santana explained “there are no ‘wrong’ decisions”. If that were the case, we wouldn’t even be having this conversation as Emma Grace, Stanton and all our little friends who fight this relentless, nasty, STINKIN BEAST would be cured and this would be a thing in all of our pasts. But that day hasn’t arrived yet and Dr. Santana wanted to make sure that we all understood that the decisions we are making for Emma Grace are in unison and with complete unity as again, there are no wrong decisions.

Ok … here’s a portion of emails sent to Dr. Barfield, Dr. Santana & Mrs. Trinka as it describes my feelings for the past decision making days ...

“From the very start of Emma Grace’s diagnosis, we gave this whole cancer mess to God. Not to say that our humanity doesn’t try to override our faith on many occasions but ultimately, we know God has this all worked out. We also knew there would be obvious risks in treating our baby girl and for some reason this phase has had us mortified trying to make the very best decisions. Initially diagnosed, we knew what the protocol called for and those decisions were made. Barney & I (as well as our dear prayer warriors) have been praying for God’s plan to be made visibly clear and everyone concerned in the making of these difficult decision be in complete unity. I left the consultation Monday afternoon with that motherly fear of knowing and hearing again the risk factors involved. I guess I had hoped God’s mighty Hand would “sign the dotted line” for us, strike a lightning bolt or something. In trying to sort out yet more information after leaving our dear Dr. Santana, I prayed. “God, we have all prayed and prayed for your mighty will to be made very clear to us with our consultations, hence decisions. Did I miss something?? Have we done the right thing for our baby?? I just don’t have the peace that I should have knowing that we are covered in those prayers.” In the quiet of my confused heart, He reminded me that, “I sent you three for these decisions”. First, Dr. Rupert, Dr. Barfield, of course, Dr. Santana. More times than not, I feel God subtlety lets His presence known when we are off looking for the “explosions”. We believe nothing is by chance or coincidence – “that in all things God works for the good of those who love Him”.
So, in saying all that, I want to relay this … we are so very thankful God has placed you two in our path just as He has so very many. We can never be thankful for the cancer that tries to turn our world inside out but we are ever grateful for His blessing of friendships and caring hearts of the many professionals thru our journey. And we are ever grateful for St Jude and your being part of such an amazing team. As you have probably already assumed, you are covered in prayer and we hope together for positive results in Emma Grace’s treatment.

PS … One of my favorite devotionals is “Bedside Blessings” by Charles R. Swindoll and here’s what October 18th says: (Coincidence that was for Monday??? Nope … Thank you, Lord.)
“Some of the best times in prayer are wordless times. I stop speaking, close my eyes and meditate upon what I have been reading or upon what I have been saying and I listen inside of myself. I listen deeply. I listen for reproofs … It is here that the Holy Spirit invades.
Please be assured that I have never heard an audible voice. It isn’t that kind of answering. It’s a listening down inside. It’s sensing what God is saying about the situation. His promise is, after all, that He will inscribe His law – His will – upon our hearts and our minds.” The scripture that follows it is: “My soul waits in silence for God only.” Psalm 62:1 Enough said …”

It is so amazing that Tina and I (who obviously have the same devotional book) and we had discussed this very thing Monday evening out on the patio. We just did not have the peace that we thought we would have by having our game plans. She had no idea that I had sent this email to our doctors nor that it had the same portion of the day's devotional enclosed. Again, is it odd?? Nope! It's God!!

(SIDE NOTE: Stanton is in my room right now playing by himself while I’m typing. Emma Grace is obviously in his room (I hope!! Ha.) And Stanton is singing & playing in his own little sweet world – not knowing that I am hearing a word, “Jesus loves me dis I know, cause the Bibles tells me so, Jesus loves me makes be feel better, Jesus loves me dis I know.” Oh my, the tears are ROLLING! Thank you so much Lord for your subtle reminders and the touching of my heart through your precious children!!)

Daddy left Tuesday afternoon and will return this weekend with Eli. Daddy probably to stay thru this next chapter hopefully, finding work here in Memphis. Please be in prayer for this transition, for dear Eli – who we will be discussing his options and adjustments. We have considered him continuing to stay with Nanna & Poppa or coming to Memphis as well. Just a lot of things up in the air right now that we are giving to God to handle. He’s so good and like Mimi Sharyn said this weekend “God is in the details”. She also shared a scripture with me as I sometimes feel my faith is not as strong sometimes as it should be. I know God knows that we are human and are not always going to be on the mountaintops with our faith. Psalms 73:26 explains it best “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”

I have four pages of notes that I have promised to update you all on and believe it or not, the above was not part of it!! (Aren’t you glad I didn’t compile it all TODAY?!?!? HAHA!) We love you all and thank you so much for your continued love, support, friendship and especially, your prayers. You can never know what a comfort it is to know God has sent His best to walk this journey with us. Please continue to lift Emma Grace & all our friends in prayer. I may not have everyone listed but God knows each and every need.

Only by His Grace – Emma Grace, Eli, Barney & Trish

NOTE: I just read this in the guestbook and it is just too appropriate not to include in this entry. It came from a precious friend, Jennifer, from back home that I used to work with in the insurance office. God laid a scripture on her heart that He obviously knew we needed to heart at this very moment ... "Nehemiah 9:19: Because of your great compassion you did not abandon them in the desert. By day the pillar of cloud did not cease to guide them on their path, nor the pillar of fire by night to shine on the way they were to take." Thanks Jenn for being a messenger of His light!

Monday, October 18, 2004 10:34 AM CDT

Justa note that we are meeting with Dr. Santana today @ 1:30pm to review our options discussed with Dr. Rupert on Friday and hopefully, get a gameplan on the "WHAT'S NEXT".

Also, The Haynes' are meeting with Dr. Furman today for planning their next course of action against this nasty beast. As you may know, Stanton's bone marrow showed positive again last week so they are having to replan the strategies as well.

Please lift specific prayers up that we all see God's perfect plan clearly and there is no mistaken that it is God's Hand leading us in making these decisions. As our dear friend, Donna, said this morning, she is praying for unity - with the doctors, our families and everyone concerned in making these difficult decisions and as it is all orchestrated by God and His perfect will.

We thank you all so much for your prayers for Emma Grace, Stanton and ll our St Jude siblings. Please know that we thank God daily for blessing our family with you. Will update later ...
Love ya'll!!

FRIDAY, OCT 15, 2004 Update:
Hey Crew!

Very Short & Sweet ...

We are meeting this morning @ 11:15 with Dr. Rupert, Head of Transplant Dept., to discuss Emma Grace's options for transplant. Then we will meet with Dr. Santana on Monday afternoon to assess our options and hopefully, have a gameplan in place. Please lift these dear doctors in prayer as well as Momma & Daddy in making these ever increasingly difficult decisions. We know God has the plan, we just pray for His lead to overcome us to make His plan perfectly clear. I am so thankful Daddy is here for these two important consultations. He's just the bombdiggity!!

The Haynes' left for Charlotte, NC yesterday afternoon for the big NASCAR race but more importantly to unveil Hayden's design on the new Domino's Pizza race car. They certainly need the break after the difficult week it has been. We pray for their family to have a WONDERFUL time in this extraordinary experience and leave the worries in Memphis!
Stanton had a mini meltdown when he left the Donald house as he thought Emma Grace would be going as well. Bless his little heart! We can't wait to hear all the great weekends events upon their return Sunday. (of course, Tina & I have already talked via phone 4 times yesterday!! ha!!)

We love you and thank you so much for your love, friendship and especially, prayers for Emma Grace & her friends battling the beast. We will update later as to the decisions that God has directed us to.

Only By His Grace -
Emma Grace, Eli, Barney & Trish

PS>>>> I promise, I will update later about last week & weekend's events...hold tight! Gotta run!

Sunday, October 10, 2004 11:59 PM CDT

Hello Dear Ones!!

Just a quick note ... (no, don't faint! and I'm not telling fibs ... it will be quick! ha!)

Emma Grace & I arrived back to Memphis at Uncle Ronnie's house around 5:20pm from our week trip to Philly and our fast & furious but EXHILERATING weekend trip to San Antonio. We were spoiled rotten all weekend. The folks at Southwest Airlines went all out!! We met some wonderful new families as well as marvelous folks from SW airlines. Believe it or not, I'm having a hard time collecting thoughts as it was just incredible so in saying that I'm going to say that my update is short & sweet for tonite. I will fill you in on the details later.

Today is Emma Grace's 2 yr date of diagnosis and what a mixed bag of emotions I seem to have today. Again, my thoughts aren't collecting too well. Part of me tries to comprehend it has only been two years, part of me recalls Oct 10, 2002 as it was yesterday and I guess that day will be etched into memory forever as well as the emotions that accompany it. Again, in retrospect I'll say, how could we not have allowed God to bless us in so many, many ways through the steps of this journey??

Daddy & Bubba made it home safely heading back home-home on the west bound route and Emma Grace & I arrived back safe as well at our home-away-from-home going east bound. It was sure hard not to follow the big red truck leaving Little Rock this afternoon but we have unfinished business in Memphis and we're back in the saddle again.

As if you couldn't guess, Emma Grace & Stanton sure had lots of catching up to do ... the kissin' has commenced again and they both could not seem to get caught up on the hugs. They were so excited and we about didn't get them separated from playing to get to bed. I know I sure was tickled to see My Tina & Mr. Jeff, too. I know this is a visual you could do without but I literally ran down the hall to get my Tina hugs. With all they had on their plate last week, they managed to move all our stuff from room #52 down to room #23 NEXT DOOR TO THEM!! Bless their hearts - they put everything away, right down to decorating the door. WOW!!! Think Uncle Ronnie's house will ever be the same with the kiddos living this close?!?!? HAHAHA

Gonna run for tonite - more later, promise! ... early start tomorrow with labwork and clinic appts. (Besides, this ole Hoot Owl's tail feathers are dragging - 6 flights in 3 days has caught up with me - major jet lag maybe?!?!) Special Prayer Requests: Please remember Stanton tomorrow who is hopefully getting his stem cells harvested or possibly a bone marrow biopsy. Just depends on what his CD34 cell count is. Also, Lauren is having biopsies tomorrow. They should know something by Tuesday or Wednesday. And yes, our Emma Grace as she is handling this 2nd round of MIBG. As always, we thank God always for your faithful prayers, love & friendship. You are the best!! May God's Sonshine wrap you up!!

Only By His Grace - Emma Grace, Eli, Barney & Trish

www.caringbridge.org/la/stanton
www.caringbridge.org/va/lauren

Friday, October 8, 2004 3:42 AM ET

Greetings All from Philly!!

As we speak this is our last night in Philly as Emma Grace was released Thursday afternoon around 5pm. WHOOO WHOOO!!! And THANK YOU LORD!!! On Wednesday her radiation level had dropped from 31 to 14.4 and Thursday it was 4.4!!! How ‘bout getting below 7 in a BIG WAY?!?!?!? Ain’t God Good?? I asked Mr. Jim, radiation safety team, if he had seen a fat lady do backflips down the hallway lately. Well, at that point, I almost thought I could. Don’t you know, they think we are totally nutz?!?!?! (Well, as you can tell, we are all a WEE bit excited!!) No one more than sweet little Emma Grace. She has been such a brave little lady thru all this and made it very well. As soon as we found out she was below 7 they stopped the Versed, pulled the foley cath (HURRAH!!) and got us in for her post treatment MIBG scan which showed very good uptake. Best of all, she got out of that bed and in her Momma’s lap! We had lots and lots of kisses to catch up on. Once she realized she could be out of the bed she was racing around the room in HIGH gear, playing hide & seek and Mother May I with Aunt Bev. She talked to her Daddy on the phone and told him her “numbers are 4.4 and I’m 4 yrs old Daddy!” She did receive a top off of platelets as she was 39,000 and we knew we wouldn’t be seeing Dr. Santana until Monday so we thought it would be best to give her some just for good measures.

Once again the Team at CHOP are fantastic. It was nice to visit with folks we had met in July and we met with Dr. Maris before we left who is absolutely incredible. God certainly has gifted him with the same type of determination and mission of treating our children in hopes on one day cancer being a thing of the past. We feel very blessed that Dr. Santana sent us to the best of the best.

We got out of the hospital and decided before we leave in the morning that we had to see the Liberty Bell so we took the bus for an adventure. It was an amazing sight and we had the added blessing of meeting Mr. Alan, of the National Park Service, who shared a lot of interesting history of Independence Square and the Liberty Bell itself. The park was closed but we got a birds eye view from the window in which the Liberty Bell is on display. Thank you Mr. Alan and Mr. Chance for the gracious hospitality and for taking time to share such wonderful history with us. Emma Grace doesn’t quite “grasp” what it all stands for but one day she will and I look forward to reminding her of our treasured adventure.

On the way back we ate at Subway and in the theme of our dinner, rode the subway back to 34th Street which was right by our hotel. Now, the country folks really have come to the city!! I’m amazed that in the whole time we have been here that I’ve only been hit up once by a panhandler – now that’s a switch from home. You can get bummed thru the gated community in Memphis. It’s been quite a week as Bev and I have taken “shifts” at the hospital and walked to and from the hotel. It is only about 5 blocks one way and we sure have gotten our exercise in this week. For those of you who know ole Momma Trish realize what a feat that is for me. (no pun intended, but my FEET really are an issue after all the steps we’ve made this week. HAHAHA!) It has been beautiful weather though – a bit cool in the mornings but nice and crisp for a brisk walk. I just want to say what a blessing it has been to have my sister in law, Beverly, with us. She has been such a great help, for me and especially, for Emma Grace. She loves to play as much as “us kids” do so we have made it just beautifully. She had never rode a subway either so that was a maiden voyage for us all. Thank goodness Emma Grace didn’t hold her hand up in the crosswalks stopping traffic this time as in this city you’d had 18 taxis at your feet thinking the little dumpling was hailing them to stop!! And we have had a lot of fun together despite the downtime in the hospital. It’s all just what you make of it.

Well, we head back to “The Delta” at 12:45pm tomorrow and we sure are looking forward to being home. Barney & Eli are meeting us in Little Rock when we arrive as we have been invited by Southwest Airlines to go on an all expense paid excursion weekend to San Antonio. They are a major contributor to the Ronald McDonald Houses and invited us to come along with 30 other families from different RM houses. I'm not sure all the events planned but I do know SeaWorld is on the list and they are placing us at a hotel on the Riverwalk. We did not know if it would work out with Emma Grace’s MIBG treatment being the same week. We just weren’t sure she would be released in time. So, we left it in God’s hands, if it was meant to be, He would work it out. We are certainly looking forward to a small break as our only vacation in the past two years have been to "Resort el St Jude" and a couple of trips to "Le Children’s Hilton of Philly". I was certainly in hopes He could work it out as Eli has been so excited to be able to do something together as a family. He always understands as he knows Sissy’s treatment is priority so I’m grateful it looks like it will work out especially for him. (We’re not on the plane or there yet … so I hesitate getting too presumptious. Ha) We have learned not to “plan” just because you never know.

Please continue to pray for Emma Grace’s treatment as we are not sure what’s next. Also, please pray for Dr. Santana as he consults with The Team concerning Emma Grace’s gameplan. Last week’s progression in disease changes things so we are praying for God to show us what is best. But God knows and He’s already got it all worked out. I’ve repeated the same verse over and over this week with Him as my focus. “Since You are my rock and my fortress, Lord, for the sake of Your name lead and guide me.” Psalms 31:3. He’s so good to send the right scriptures when we need them most and send comfort when the uncertainty tries to discourage.

Our little man Stanton is out of ICU as of yesterday (which most of you already know because Tina is SO good to journal everyday.) We are so thankful he is doing better and from what I hear he’s anxious to see his “Emma Gace”. We miss you little man and we’ll see you soon!!!

Thank you so much for your wonderful messages in the guestbook, for your love and prayers. You cannot know what a comfort it is to be lifted by your encouraging words especially when we feel so far from home & home-home also, the strength God is delivering by your faithful prayers. Once again, Emma Grace has proven there is power in your prayers and most of all, we serve a mighty, loving Father.
May His Sonshine surround you and know we thank God for your being such a blessing to us.

Only By His Grace – Emma Grace, Aunt Bev, Eli, Barney & Trish

DADDY & BUBBA – WE’LL BE LOOKIN’ FOR THAT BIG RED TRUCK WHEN WE ARE CIRCLING TO LAND!!! WE GOT HUGS SAVED UP FOR YOU!!!

Tuesday, October 5, 2004 11:09 PM CDT

Hello from Philadelphia!

Yesterday was a LOOOOONNNNNNNGGGGGG day as you can imagine. What was I thinking fly out so early and stay hooked up for the entire day with appts and admit on top of travel day?!?!?!? It worked out ok though. Emma Grace took it all like a little trooper and is SO glad to have her Aunt Bev here with us. She has been giving Bev the do's and don'ts of the routine (she's a pro now ya know) and she's been quite the little lady. I'm so grateful she came along since Daddy wasn't able to. It has been such a blessing for the extra help and not to mention we really don't have the opportunity to spend much time together other than family functions. Poor Bev is getting a taste of the "No! Let Aunt Bev do it Momma!" treatment as Emma Grace is in her anti-Momma mode especially when someone else is around! ha! It's really ok because I know she loves having someone besides me ALL the time.

Emma Grace is doing pretty good. She received her foley cath (not really happy with that but LOVED getting the milky stuff for anesthesia!) and she received her MIBG treatment around noonish (central time). She is doing pretty good as the Versed keeps her from wanting out of the bed and makes her a little like Otis on the Andy Griffith Show. So ... needless to say, life is always entertaining with her on the comedy scene. They gave her some pain meds as she was complaining of leg pain (active tumor area) and from our last treatment we learned the medicine obviously goes to the diseased area and therefore can cause discomfort. But they gave her some meds and at last, she sleeps soundly. Again, we are looking for the #7 again just as before. Once her radiation level reaches 7 or below, we're outta here! They will come in the morning to read the levels again. We started at 31 today for our baseline reading so am anxious and hopeful 7 will come soon.

Please say extra prayers that this treatment will gain even better ground than the first treatment. We are hopeful that it would just send the beast into OBLIVION forever. Dr. Maris visited with me yesterday and said that he felt she would probably need her stem cell rescue after this treatment as she is somewhat impaired with her platelets already. (She just received a "fill up" on Friday before we left). He also feels she needs to be on active treatment by the time the 6 weeks is complete as we don't want to give the beast any lee-way to take hold and grow again. He said he would be consulting with Dr. Santana concerning options for treatment. You just cannot know what God sends these two gentlemen are to us. They are two of the top men in the field of neuroblastoma and it is so comforting to know they are "putting their heads together" for the best possible treatment for our baby girl. Chance? Coincidence?? NOPE!!! IT'S GOD and we are so thankful to Him for placing these two incredible doctors in our lives.

Special Prayer Request: Our little man Stanton has been back in the hospital as of yesterday and with a scare again of high fever, high heart rate and low blood pressure. They actually spent about 6 hrs or less in ICU. Last I talked to Tina they were moving them back to teh 2nd floor. We ask for special prayers for our Stanton and Momma & Daddy as well. God's holding that precious boy in protective Arms. Hang in there Tina & Jeff and know we've got the prayers covered on the east coast as well!!! We love ya'll!!

I praise God for the peace He has given us to just do today. My focus has been all about today and tomorrow we'll focus on that day. I have two very special prayer requests. Of course for Emma Grace but also for her holding on until she can get out of the room again. It is hard on her not being able to be held and uh yeah, hard on Momma too. God has her wrapped up, holding her tight and I like to envision His loving arms holding my baby girl in that bed as she sleeps since I'm "not allowed" right now. He's so good! That ole nuke stuff don't bother Him none!! Also, I want to especially ask for prayers for Daddy Barney as he is home working while his girls are away to Philly for this trip. This has been and continues to be really tough lately for him. (for us all...duh! but especially, dear Daddy). We thank you always for your love, support and especially for your prayers. May God's Sonshine warm your heart as you do ours!

Only by His Grace - Trish & my glow-in-the-dark pumpkin, Emma Grace

Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."

PS ... If you read the journal history, you'll see that there are dup entries for Oct 5th. They are the same entry and not sure how that happened other than operator error. ha! love ya'll

Tuesday, October 5, 2004 11:41 PM CDT

Hello from Philadelphia!

Yesterday was a LOOOOONNNNNNNGGGGGG day as you can imagine. What was I thinking fly out so early and stay hooked up for the entire day with appts and admit on top of travel day?!?!?!? It worked out ok though. Emma Grace took it all like a little trooper and is SO glad to have her Aunt Bev here with us. She has been giving Bev the do's and don'ts of the routine (she's a pro now ya know) and she's been quite the little lady. I'm so grateful she came along since Daddy wasn't able to. It has been such a blessing for the extra help and not to mention we really don't have the opportunity to spend much time together other than family functions. Poor Bev is getting a taste of the "No! Let Aunt Bev do it Momma!" treatment as Emma Grace is in her anti-Momma mode especially when someone else is around! ha! It's really ok because I know she loves having someone besides me ALL the time.

Emma Grace is doing pretty good. She received her foley cath (not really happy with that but LOVED getting the milky stuff for anesthesia!) and she received her MIBG treatment around noonish (central time). She is doing pretty good as the Versed keeps her from wanting out of the bed and makes her a little like Otis on the Andy Griffith Show. So ... needless to say, life is always entertaining with her on the comedy scene. They gave her some pain meds as she was complaining of leg pain (active tumor area) and from our last treatment we learned the medicine obviously goes to the diseased area and therefore can cause discomfort. But they gave her some meds and at last, she sleeps soundly. Again, we are looking for the #7 again just as before. Once her radiation level reaches 7 or below, we're outta here! They will come in the morning to read the levels again. We started at 31 today for our baseline reading so am anxious and hopeful 7 will come soon.

Please say extra prayers that this treatment will gain even better ground than the first treatment. We are hopeful that it would just send the beast into OBLIVION forever. Dr. Maris visited with me yesterday and said that he felt she would probably need her stem cell rescue after this treatment as she is somewhat impaired with her platelets already. (She just received a "fill up" on Friday before we left). He also feels she needs to be on active treatment by the time the 6 weeks is complete as we don't want to give the beast any lee-way to take hold and grow again. He said he would be consulting with Dr. Santana concerning options for treatment. You just cannot know what God sends these two gentlemen are to us. They are two of the top men in the field of neuroblastoma and it is so comforting to know they are "putting their heads together" for the best possible treatment for our baby girl. Chance? Coincidence?? NOPE!!! IT'S GOD and we are so thankful Him placing the two incredible doctors in our lives.

Special Prayer Request: Our little man Stanton has been back in the hospital as of yesterday and with a scare again of high fever, high heart rate and low blood pressure. They actually spent about 6 hrs or less in ICU. Last I talked to Tina they were moving them back to teh 2nd floor. We ask for special prayers for our Stanton and Momma & Daddy as well. God's holding that precious boy in protective Arms. Hang in there Tina & Jeff and know we've got the prayers covered on the east coast as well!!! We love ya'll!!

I praise God for the peace He has given us to just do today. My focus has been all about today and tomorrow we'll focus on that day. I have two very special prayer requests. Of course for Emma Grace but also for her holding on until she can get out of the room again. It is hard on her not being able to be held and uh yeah, hard on Momma too. God has her wrapped up, holding her tight and I like to envision His loving arms holding my baby girl in that bed as she sleeps since I'm "not allowed" right now. He's so good! That ole nuke stuff don't bother Him none!! Also, I want to especially ask for prayers for Daddy Barney as he is home working while his girls are away to Philly for this trip. This has been and continues to be really tough lately for him. (for us all...duh! but especially, dear Daddy). We thank you always for your love, support and especially for your prayers. May God's Sonshine warm your heart as you do ours!

Only by His Grace - Trish & my glow-in-the-dark pumpkin, Emma Grace

Romans 12:12 "Be joyful in hope, patient in affliction and faithful in prayer."

Monday, October 4, 2004 2:33 AM CDT

Good Early Morning Via Temporary Remote in Little Rock!!

(I still have notes accumulating to share but tonite's not it either ... just have to hang on a day or two more ... )

Emma Grace, Aunt Bev and I are headed to Philadelphia this morning on the the early bird flight. She will see Dr. Maris this afternoon @ 1pm, will be admitted late this afternoon and receive her MIBG tx on Tuesday about noon. At present, my little darling is sleeping so sound and I cannot think of a more precious sight than seeing my children sleep so peacefully. Of course, Momma is being her usual "hoot owl hanny" but I just had to share tonite.

There's a whole passle of things that have lead up to this especially in the past week and I'm not going begin to name each moment, blessing, trial or person involved. God orchestrated each note, literal and audible, each smile, each tear and each person who continues to faithfully pray for our darlings. (Now see, I'm not even able to relay fully what's in my heart ... so I'm just going to stop there and say this ...)

Once in awhile God gives me something in poetic / semi-poetic form and I try to write down as it rolls by or I miss it. He loves my full attention in the quiet of the night and I am still learning to take ALL my burdens to Him and LEAVE THEM THERE (NOTE: Hello!! That's the tough part!! You caught the part that 'I'm stilln learning'). Tonite/this morning He is reminding me (AGAIN) to take a deep breath and let Him have the worries, the burdens because He is in control.

God knows
God cares
God hears
God sees
But above all is His love for you and me.
My notes jotted in the midst of His Reminder
By Momma Trish Oct 4, 2004

I know beyond any doubt satan would love to make us forever look away from God, curse Him, mock Him and just throw in the towel. He's quite crafty and does whatever it takes to push our buttons - how better than thru our babies? I've said it before and I'll reiterate ... I've read the back of the book and it don't quite pan out as he would hope. Our babies are in God's sheilding, healing arms and we are grateful for His mercies. Thank you Lord for Your promises, Your protection and most of all, for Your unconditional, unfailing love.

Thank you for your faithful prayers for Emma Grace & her friends who face their battles with God as their shield. Please pray for traveling mercies for us this week and most of all, for God's healing touch on Emma Grace's body. She said for the first time this evening that she wanted to go home soon, she wants to see Sam, her bassett hound. She didn't seem sad or even whining, she was just letting me know that she missed Sam. Her comment was in her most cheerful and determined attitude, "But I gotta go get this ole treatment done first so my cancer will be gone." Then her right arm and fisted hand went in the air with her best Dora impression, "EXCELLWENT!!!!!" Sounds like a great plan to me, baby girl!! You gotta love her perspective and I thank God for His humble teachings thru her and her strong little warrior buddies.

We love you all and pray for His Sonshine to surround you.

"MARK, SET, GOOOOOO!!!! EXCELLWENT!!!!"

Only By His Grace - Emma Grace, Eli, Barney & Trish

"Let the morning bring me word of Your unfailing love, for I have put my trust in You. Show me the way I should go, for to You I lift up my soul." Psalms 143:8 NIV

Friday, October 1, 2004 2:28 AM CDT

Well ... I have a whole page and a half of notes of some really great stuff that I wish to share with you as it has been wild the past week. But I'm just going to keep those notes for a later date though when I can get my thoughts collected a little better to share those details. We've had a change of events that needs the attention of our dear prayer warriors at "their stations" for battle.

Emma Grace has been doing her pre-tx scans/tests for the MIBG tx in Philly which is going to be done on Tuesday. We finally finished them all today and I visited with our dear Dr. Santana late this afternoon. His words were "the MIBG tx just didn't hold her." We have new tumor growth. Two major issues - the spot on her femur is brighter, plus the places are back on her knees, etc. Basically, lower extremity involvement. The spot on her right arm is still not showing anything. Thank you Lord. The other issue is the bone marrow is not clean again. UGH!! The good news is her CT scan is still showing clear. I didn't quite prepare myself for any news that we had taken any sort of "backwater" as I felt we should be still rocking along and get these baseline scans needed for the tx next Tuesday. It is so amazing how things can change in a mere two weeks. Needless to say it is frightening and reminds you once again how this relentless beast is quite manipulating and devious. But Who is bigger?? Who is still on His Throne?? Who knows far better than anyone what the answers are?? God and God only. And best of all, He's here, He knows, He's already 'there' waiting and thank you Lord for loving us so that Your arms catch and carry us when we seem to have trouble knowing our steps.

Obviously, this isn't what we were hoping to hear today but as Mrs. Donna reminded me tonite that God isn't surprised. He knows all about it and is there no matter what.

We are still going to Philadelphia on Monday, doing the MIBG tx on Tuesday and praying for release by Friday at the latest. Dr. Santana said that we will discuss the bone marrow transplant when we return. It looks like Emma Grace is going to need it after all. I will update when I know more and will try to be "good" about updating from Philly.

We praise God for the options still available. Please pray specifically for Emma Grace's treatment next week, our travels to & from Philly. My sister in law Beverly is traveling with us which is a God send. Also, please pray for the upcoming decisions to be made and that everyone involved with her decisions are taking God's lead completely. God is still working this miracle that we prayed for Oct 12, 2002 before we came to St. Jude. He's just not finished yet.

Also, please pray for a dear little darling, Lauren Collins,(another neuroblastoma sister) who had her check up scans this week. They have found some growth that is going to need to be biopsied. This sweet family needs our prayers as well. www.caringbridge.org/va/lauren

Tina and Tonya - I'll say it quick but straight from my heart ... You cannot know how thankful I am God had you here with me today. He always knows exactly what we need. Ain't He grand?? Mr. Jeff & Jeff - Thanks for sharing your girls with me today. Again, His timing equals His plan. We love you all bunches!

Barney, Eli and my Mom & Daddy are coming today and I'm sure looking for the big red truck in a HUGE WAY! Thank you so much for your love and continued prayers for Emma Grace & her dear friends who face this beast full steam ahead.

Only By His Grace - Emma Grace, Eli, Barney & Trish

PS...I'm saving my notes to share later because you know I'm gonna have to Git R done & catch up!!

Tuesday, September 21, 2004 4:09 AM CDT

HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY OUR EMMA GRAAAAAAAAACCCCCCCEE!! HAPPY BIRTHDAY TO YOUUUUUUUUUUUUUUUU!!!! Happy 4th Birthday, Baby Girl! We Love you!!

Happy Day to You, TOO!!

We trust this Monday has been good to you … ours has been FULL, BIZZY and EVENTFUL as always when Emma Grace has allowed “Ellie Mae” to surface. I have to admit Ellie Mae started the day with us and stayed for the majority of the day, hence, this has truly been a MONDAY!! (smile)

We started the day with Daddy & Bubba going with us to our appt with Dr. Santana. She really did pretty well during the appt it was shortly thereafter our “other child” arrived. (Ellie Mae) Dr. Santana arrived to the room with a host of his team from D-Clinic who brought Emma Grace a poster birthday card signed by the team, balloons, serenading by the “D-Clinic Chorus” and a whole finale of birthday confetti. Yee Haw!! Emma Grace loved the special attention and it took her completely by surprise. She has told everyone she is “still 3 but I’ll be 4 September 21st”. Little does she realize that September 21st was in just a few hours!! Ha! Thank you, Dr. Santana, Trinka & Our D-Clinic Team for the “Birthday Bash in Clinic” and especially, for taking care of our baby girl as if she’s your own. (Well, she is partly yours – you’ve helped raise & spoil her!) We just can’t put to words how very special you are to us … not to mention to Miss Emma Grace!

There’s lots of good news to share for the day. (Drum Roll pleezzz…) First, Emma Grace’s ANC is 5600!!! WHOO WHOO!! We’re over the 5000 mark!! No more G-shot for now!! Since her blood and platelet transfusion on Friday she is still holding really well on her blood count and her platelets didn’t fall as bad. There are down to 39,000 so we are going to recheck again on Wednesday.

Dr. Santana is pleased with Emma Grace’s response to the MIBG treatment as is Dr. Maris so they have scheduled her for another MIBG tx in Philly on Oct 4th. (Deep Breath! Ahhh yeah, that’s only 2 weeks away.) She will have her CT scan, MIBG scan and bone marrow biopsy next week prior to leaving for treatment the following week. Dr. Santana said that we need to “pray hard” (his words) that within this time period that she has no “growth activity” as once again she will not be receiving any sort of treatment prior to our trip to Philly. God’s already there and already knows, right? Ok … good! Please specifically for God’s protection over Emma Grace – keeping the beast “at bay”. Also, for Barney & I in working out details and making the decision whether Momma can go “solo” this time to Philly with our baby girl.

We have tabled the issue of bone marrow transplant with a non-related donor at this point until we see how well she does with the MIBG tx. Dr. Santana explained that we are not ready to discuss those options unless we were to see active growth. The reality is always with us concerning the “possibilities”. But again … God’s already there and He already knows. Our faith stands with Him because He already has it handled no matter what the possibilities. So my response was to Dr. Santana & Trinka, “That’s just fine, because I don’t want to talk about that right now. We’re thankful with the good news and God’s given us today. That’s all any of us have.” We’ve had good progress with the nuclear treatment and I know God is Head of the Worry Department so I’m leaving that in His Office to handle.

Stanton had good news today as well … the preliminary bone marrow biopsies are clear!!! YIPPPPEEE!!! AND HALLELUJAH!! I know they are relieved and it’s now getting him ready for the next step – transplant. They are going to do another round of ICE chemo to keep the bases covered. So please remember them as they get ready to go inpatient for this next round of chemo and also for the guidance of decisions for the next steps. www.caringbridge.org/la/stanton

Daddy & Bubba went home today which was bittersweet to say the least. It was SO good having them here this weekend and being with us during our visit with Dr. Santana. I’m just never good at seeing the big red truck’s tail lights pulling out. And needless to say, neither are they. But we had a great weekend with them and it was so nice to be together. Emma Grace got her Daddy & Bubba “fix”.

Of course, Emma Grace & I headed out with the Haynes’ to Chili’s for dinner with their nationwide fundraiser for St. Jude. If the location on Poplar & Perkins are any indication of how well they were working for our kids, I would say the met their goal and then some! It was awesome – folks sitting outside, patiently waiting for a table and the inside was PACKED!!! Some that either didn’t wish to wait or maybe had other plans for dinner were bringing in donations. How great is that?!?!? It was so heartwarming to see such a great turnout. It goes without mentioning since Emma Grace missed her nap today that dear sweet Ellie Mae was still making her presence known at dinner. Oh my!! It’s ok as she sure didn’t have to be rocked to sleep tonite!!

Sunday The Haynes’ and The Hampton’s had a wonderful blessing of visiting our friends Todd, Dawn & Mr. Mason Pierce’s church, Germantown Baptist Church. It is always so nice to worship with friends. The church is HUGE and there were certainly a lot of folks filling the pews. The Pierce’s had led us upstairs and there in front of us was Krisha & hubby, one of our nurses from the 2nd floor, sitting two rows down. To our right sat Christi, also one of nurses from 2nd floor and behind the Haynes’ was a radiologist that knew Mr. Stanton. As Mimi Sharyn would say, “Is that odd or is that God?” Well, we knew God placed each person there at exactly that moment for the blessing to be ours. So in the midst of being visitors of the Pierce’s, God provided re-enforcements of saying “you’re always at home in My House. Here are some more familiar folks I’ve sent your way!” We had a great time worshipping even with Emma Grace & Stanton going at it thru part of the service. (yikes … they really are brother and sister, ya know!) Emma Grace got to open one of her birthday presents early from Nanna & Poppa as Nanna knew she would need to wear one of her new “presents” to church that morning. You should have seen her before we left, twirlin’ & twirlin’ & twirlin’! (You know, you can measure if a dress is just right by how much “twirl” it had in it!) Good Job Nanna, the red/white/blue plaid dress passed the Twirl Test!

Well, Sunday evening was the Big Birthday Girl Bash. (The way it’s going we may be celebrating all week!! That’s ok!) And did we have a grand time!! This was a first by actually spending her birthday away from home-home but we sure made the best of it. Of course, I couldn’t have gotten it all put together without dear Tina’s help. I think the adults had just as much fun as the kiddos did. I’m SURE of that where the Silly String War was concerned!! Emma Grace had a great time and was spoiled like a little Princess. Thanks to everyone for making her 4th birthday such a special time. You cannot know how grateful we are that God has sent us such a wonderful St Jude family.

All of our guests are extra special but I have to mention one in particular – Ms. Billie, Dustan Heaton’s mom, came from Sikeston, MO to share in Emma Grace’s birthday festivities. I won’t be able to share this without tears so please bear with me. (I wasn’t “allowed tears” at the party by Billie but she didn’t say anything about afterwards!) First, let me reassure everyone reading this that Billie is doing great. She looks fabulous, rested and just a rock. She walked into Uncle Ronnie’s house with a calm, sweet peace about her that is truly from God. You could see it on her face and read it in her eyes. God has given her comfort and peace that only He can when faced with all she has been thru the past almost 3 yrs. Our Angel Dusty had been gone only a week and yet she wanted to be back with part of her St Jude family and celebrate with us. She said she knew that Dusty would want her to be with us, come check on his friends at the hospital and you have to understand that describes Dusty to a T – unselfishly, looking out for the ones he loves. You can only imagine how she blesses our hearts with her love, support and friendship. Most of all the strength, inspiration and encouragement that she will tell you come straight from God. Billie gave me a memorial folder from Dustan’s services and other than his memorial summary there was one verse that so perfectly describes our brave Angel Dustan. “I have fought the good fight, I have finished the race, I have kept the faith.” 2 Timothy 4:7 What a testimony he leaves that continues to speak to hearts! God always has a plan.

With my baby girl turning 4 today, I hate to admit it but she’s just not a baby anymore. (Though she is ALWAYS gonna be my baby girl). It’s been a day (weekend) of emotions; mostly good ones and then those when I glance back over the past almost two years trying to convince myself it’s only been two years?? Sometimes it seems like ages ago and other times like yesterday. As many of you recall, it was early morning on her 2nd birthday we found the lump under her left rib. I seem to remember it looked about the size of my thumb lying under her skin below that rib. That particular birthday party was cancelled as we thought she had mono & strep. Never could we have guessed what God had in store for her and us within her next two birthdays. I’ve not ever taken the time to read Emma Grace’s journal from the start. I know it’s been almost two years but those earlier times of diagnosis are still too fresh in my heart. I do recall stating something to the affect that God quietly said “Now, do I have your full attention? Those things you once worried about are no longer important.” I feel that’s what He desires from all of us whether it’s the big or small details of our everyday life. Here are a just a few perspectives I’m so thankful God has shared with me personally and loving me enough to open my heart to things I often took for granted.

*My Husband, My Friend - I thank God always for providing me with Barney who is the best part of me.
*My children - Emma Grace: who has shown me in just her four short years how to face life head strong and head on. Her strength and determination are truly from God. She has shown us what God means by having a the faith of a child, honest and pure. Making life simple in her world that hasn't been so easy.
Eli: What a young man he has become. He has adapted to our A.C. (after cancer) life which grace and without hestitation for the best interest of his sissy. I love to hear my Eli pray, you can tell he loves Jesus and has compassion for those around him.
Shelly & Dusty: Those we don't get to spend as much time together, they are always in touch and always supporting their little sis. Amber & Oren: For taking such good care of Eli when we've been away and always including him. For loving Emma Grace like she's your little sis!
*Our Family - when our world is shaken it affects everyone. The love & support is absolutely immeasurable for all they do for us.
*Thankful God has given us another day not to mention another birthday.
*Total subjection and submission to His purpose & His plan – not ours. He’s the One who is in control, not us and He really does have it worked out – without our help.
*Faith – like never before. It’s not just something you carry around. Bro Paul once said in a sermon, “Faith is not faith until it’s been tested.”
*Quoting Max Lucado’s book title “It’s Not About Me”. It’s ALL about Him. There’s no “I” in God. Enough said.
*Friendships: Vintage & New – I could write a whole journal entry about valued friendships. (that will have to be another day) – but I will reiterate, each and every friendship God has shared at precisely the right moment and are forever priceless treasures in our heart.
*Power of Prayer – Indescribable love & strength being felt right when it’s needed most and realizing the prayer warriors, known & unknown, were covering our family, lifting us to the Father.
*Stop and Listening to what God is saying without all the interference.
*Heartaches healed by God’s mighty but gentle Hand.
*Humility – In time of need, God always sends His best.
*Understanding – finally realizing that in this life I will never “understand”, so I just had to drop it. But He promises one day He will make it all things crystal clear.
*Never Alone – In times of tough decisions, long days and longer nights, when family is far and friends have gone home, God never leaves us alone. It’s in the quietest of hours He often gently reminds me “I’m Right Here”.
*Praise – Everything big or small, joys or sadness, God is SO worthy of continuous praise.
*Looking Up and not looking back.
*Love – the unconditional, unfailing love; it only comes from God. I'm thankful for my salvation that He so willingly gives to us all by simply accepting Christ. His love is the ultimate sacrifice because He gave us His all – His Son with a price. He loves us so, He wants to spend an eternity with us.

May God’s love surround you and thank you for allowing us to be part of your journey. We love you and thank you always for continuing to lift Emma Grace & her friends in prayer! Looking forward to the day we can spend an eternity together.

Only By His Grace –
Emma Grace, Eli, Barney & Trish

“We walk by faith, not by sight.” 2 Corinthians 5:7

Sunday, September 19, 2004 2:42 AM CDT

BEAUTIFUL, BLESSED DAY TO ALL!!

TV GUIDE NOTE – Marlo Thomas will be appearing on the Emmy’s tonite accepting the Humanitarian Award on behalf of her sweet Daddy, Danny Thomas. What a great honor for this dear man and all the marvelous work that continues with his dream and reality of St. Jude. Congratulations and Thank You!!

DON'T FORGET CHILI'S ON MONDAY - As I mentioned in Thursday's post, Chili's Restaurants are dontating ALL proceeds for Sept 20th's business day to St Jude!!

Now … I imagine most of you are picking yourselves up off the floor to see that I’ve actually updated twice in the same week … ha!! Wonders never cease, eh Mr. Jeff??

It’s been quite the bizzy week … Emma Grace is still doing just great. She received blood & platelet transfusion on Friday afternoon late but the great news is her ANC is now up to 3300. Getting closer to the 5000 mark that we’re looking for soon … We are looking forward to seeing Dr. Santana on Monday to hopefully, get a line on what’s next. All in all, Emma Grace is going strong. Unless you checked “under the hood” for her battle wounds or saw “Fred & Wilma” (her double Hickman Lumen lines) you would never know she is any different than any other preschooler. Although, you would wonder why in the world she’s a tab bit on the spoiled side. (LARGE understatement! Ha!)

We are so thrilled and rejoicing with the preliminary reports of our Stanton’s MIBG scan showing “significant improvement”. Talk about some serious HALLELUJAHS!!! God’s healing hand is soothing & smoothing out his diseased areas and we are all looking forward to the day this is behind us for all of our babies. Mr. Stanton had his bone marrow aspirate on Friday and should have results on it as well on Monday when they meet with their doctor. If you could have heard Emma Grace’s prayer during lunch on Friday while Stanton was having his bone marrow aspirate done, you would agree that there is great news waiting the Haynes’ in that area as well. She had Tina & me both in tears (again). Out of the mouths of babes is the purest of sincerity and innocence that must make God’s heart smile to hear these dear children lift their brothers and sisters up to His Throne in prayer.

Friday was literally a ROARIN’ DAY AT THE JUDE!! The Southern Cruisers came strolling thru the main gates of St Jude with over 500 beautiful motorcycles!! Talk about a sight and everyone, especially the kids loved it!! Some held their hands over their ears, (gee, ya think Emma Grace might have been one of them?!?!?) but could not take their eyes off the many rumbling, shiny bikes carrying riders with the biggest hearts and smiling faces. They were as excited to see our kiddos as we were to see them. One of the men from the Memphis chapter told us they had risen right at $125,000 from all over the country for St Jude. Behind the biker parade was a tractor-trailer rig that was loaded with goodies for our kiddos – toys, wagons, wheelchairs and more toys. What an overwhelming blessing to meet these wonderful people and especially to be able to say thank you for their generosity and kindness. Emma Grace was in prime form on Friday as she had dressed herself that morning in her “high expressive” attire; pink Paris shirt, hot pink ruffled skirt and her lavender fuzzy-flume slide dress up shoes that sweet Miss Bella gave her. Needless to say, I was not able to change her mind and that’s what she wanted to wear to her St Jude. Ok, so be it & lesson learned … we should all be so free spirited to wear our lavender-fuzzy-flume-slide-dress-up-shoes more often. Once we met the great folks from Southern Cruisers she had a pink bandana do-rag to match! Emma Grace picked up really quick from Tina & I of saying “thank you” to all the great folks who were from all over and were wearing their colorful black vests. She made sure that she emptied my entire supply of her website cards from my purse. It was quite comical almost as if she were running for office or something. Tina & I were getting pretty amused that she would even “HEY!” someone in front of her so she could hand them a card as well. And with each card given and even after we were temporarily out of her cards, there was a sweet little “thank you” that followed from the heart of a not always so little girl who truly knows how well their contributions are being spent. Thank you Southern Cruisers for your wonderful visit, your generosity and love for our children of St. Jude!! It was our pleasure to meet you and you certainly made our hearts smile!! Keep Cruisin’ For The Cure!!!

Emma Grace & I started Saturday off with meeting some wonderful folks from Lodi, WI who “Saddle Up for St. Jude”. Emma Grace was anxious to meet the “cowboys and cowgirls” as she referred to them. She was doing pretty well until she ran across a trike in the parking garage then Ellie Mae appeared. I’m not sure why she gets “tunnel vision” when she’s on a trike but I might as well talk to the wall when she’s pedaling at a high rate of speed! She finally settled down enough to have her pictures made the cowboys and visit with these dear folks who drove all the way from Wisconsin. (I think Emma Grace thought they would be arriving on horseback!! Ha!) We had a wonderful visit (in between chasing Emma Grace – UGH!) and it’s always such a privilege to personally thank folks for their hard work and dedication for our children. Richard Bochnen and Richard Loeb shared with us they have been having annual events for the past 8 years and that this year’s riding event raised over $55,000 for St Jude!! That’s absolutely incredible and Thank you so much for love and support of our children!! Happy Trails to our new friends in Wisconsin!! Happy Anniversary to Mr. & Mrs. Richard Bochnen and Happy Birthday, Mrs. Bochnen on Tuesday the 21st!

Well, we are having Emma Grace an early birthday party on Sunday evening at our home-away-from-home, Uncle Ronnie’s house. Her 4th birthday is actually Tuesday, the 21st but Daddy & I decided late Friday evening we better celebrate while he & Eli are in this weekend so the entire afternoon was spent doing just that … getting ready for a birthday party!!! WHOO!! WHOO!! We are always extra thankful for another birthday to roll around and I can’t help but fight back tears of how her four years of life have been met with more obstacles, battles, triumphs and blessings than we could have ever imagined. What a roller coaster she has ridden over half of her life now and with more grit and determination than ever. She is truly an amazing little girl and I’m not just saying that because she’s ours but because she is God’s child. His love, mercy, strength and grace are ever amazing to me. We thank Him daily for each battle won, each obstacle crossed with His guidance, each triumph praised in His name and each blessing of yet another day He has given. Also, the many special blessings of love and friendships that have been made along the way. God just knows, He provides the exact doses we need … He’s so very good.

So … Tina, Emma Grace & I spent the ENTIRE afternoon shopping for goodies for this last-minute-LET’S-CELEBRATE-PARTY!! Emma Grace’s usually the one we all need roller skates to keep up with but let me tell you, when it comes to shopping – Tina’s THE BOMB!!! OH MY!! She wore Emma Grace out on the first stop which was Wolf Chase Mall of course and there were at least 3 more stops after that! You know, I was tired before I even started because I could see that “shopping gleam” in her eye and I knew I was headed for the marathon. We had a great time and truthfully, I’m so thankful for the time to spend with our Tina. We got in the car on our way to the mall and Emma Grace announced “this is girl time”! Alrighty then, enough said! And we sure enjoyed our “girl time”. Of course, Emma Grace was entertaining as usual which is always good medicine for the soul. Thanks Tina for helping us put together Emma Grace’s special birthday party in less than 6 hrs!! You really are the Bomb-Diggity as our dear friend, Chris would say!! Love ya, Tina Girl!

Daddy & Eli arrived this evening and BOY, OH BOY! Were we ever glad to see them!!! My heart skipped a beat or two when I saw that big red truck round the corner of the Ronald McDonald House!! Emma Grace is sure happy to have her Bubba & Daddy here with her. (You can only stand so much Momma Time, ya know! Ha)

Well … how in the world did I get so long winded again?!? I just updated a couple of days ago?!?!? Have a blessed day and know that we are ever thankful for your prayers for Emma Grace & her friends. We love you all and thank God for your love & friendships! May His Sonshine surround you!!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

PS…Just to let you know Sherri, our house manager at RMH, is recovering well from her surgery on Monday. We sure have missed her being “down the Hall”. See ya soon, Sherri! Happy Mending!

Thursday, September 16, 2004 8:21 AM CDT

JUSTA NOTE ... MARK MONDAY, SEPT 20TH ON YOUR CALENDARS!! CHILI'S RESTAURANTS ARE GIVING THE ENTIRE DAY'S PROCEEDS TO ST JUDE CHILDREN'S RESEARCH HOSPITAL!!! IF YOU HAVEN'T MADE LUNCH OR DINNER PLANS, WHAT A GREAT WAY TO SUPPORT OUR ST JUDE!! THANKS CHILI'S FOR YOUR COMMITTMENT FOR OUR CHILDREN!!!

Well…Helllloooooo to You!!

All is going well with our girl … Emma Grace has been in HIGH GEAR (whew!) and feeling great. She only had to have ½ unit of platelets one time last week and so far only ½ unit again this week. We will be checking labs again today so we’ll know more then. Barney & I wondered why only a ½ unit then it dawned on me Monday that they are probably in hopes of getting her by with less platelets which is good meaning she is holding her own and just needing a “top off” every so often. So, we felt better when I presented that theory to Daddy, he agrees and it just makes sense. We meet with Dr. Santana on Monday and I’ve got a list a MILE long of questions. We should have more info then as to the game plan but for now, we’re just taking things one day at a time and enjoying some down time of just lab checks.

As I updated in the mini-message on Sunday, Mr. Dustan Heaton gained his wings around 2 am that morning. This young man, 20 yrs old, carried this marvelous gentle, sweet spirit with him everywhere. The younger children, especially Emma Grace, looked up to him as their Giant Hero. No matter what he was going thru with his treatment or how bad he felt, he always took time to spend with our babies whom he dearly loves. You just don’t see every young, big country boy sit down to have a “tea party” in the child life play area with a then 2 yr old little girl whom we all know as Emma Grace. Please continue to remember his family as today is the services. I spoke with Billie, his mom, Tuesday night and she is doing incredible. She’s such a strong woman and knows her strength comes straight from God. Dusty fought his battle with more bravery, strength and endurance than I can even describe. He would never let you forget that “God has it all under control” as he reminded his momma prior to his going Home which is an amazing testament to his faith. Billie reminded me again that Dusty wanted to be in “Big Church” and that’s why he kept asking the time and day. He waited to have Big Church with Jesus … who could ask for a better church than that? If you would like to send Billie a note, I have attached her email addy for you. BILLIE HEATON [bgheaton@sbmu.net].

Stanton, Christal and Emma Grace have been having a big time together. There certainly is never a dull moment especially with Stanton and Emma Grace around. Christal is the “elder” of our babies and just sits in awe of how wild our kiddos can be. She’s such a little Missy. Chris said God knew she couldn’t handle having a child who wasn’t calm. (She said it lovingly all the while I know she really needed to say “couldn’t handle having a rompin’, stompin’, messin’, gaumin’ rowdy girl” like mine!! Chris was just being polite!! HAHAHA) Miss Christal headed home this morning before the chicken rose as she is finished radiation Wednesday morning. The girls have been having “sleep overs” and Tuesday night we had a Princess PJ Party. We had our Princess PJ’s on, our foo-foo Princess shoes and danced and danced and danced to lots of Disney Tunes. Miss Christal was even honoring us with her wonderful voice as she danced. It was precious! And OH How We are Going to Miss Them!!! (But I’m not talking about that right now!!). I’m so thankful they are getting finished with treatment and really am happy they are headed home. They took off about 6:30 this morning after getting to spend one more night in the Hampton Suite ha! That sweet little Christal was singing, “She’ll be comin’ round the mountain when she comes” at the crack of dawn this morning while I’m trying to carry her to the car. Oh my, what a precious little girl and so quick witted like her dear Momma! We said our “see ya laters” (no goodbyes, eck!) and sent them on their way with our blessings. I asked for angels on each wheel, on the hood, on top of the car, everywhere a hedge of protection – yeah the ones outside the car needs to strap down since they’ll be driving in the midst of Ivan’s realm. Besides, I know Chris drives with the “get there now” attitude. Please pray for Christal’s treatment to rid this beast for good, Momma Chris’ pregnancy (due in Dec) and for their traveling mercies with Ugly Ivan making his way inland. They are headed to Atlanta then on home to Tampa on Friday. Christal will have follow-up scans the first of November. You can visit our girls on: http://christalinfo.servemp3.com

Mr. Stanton is having his big MIBG scan this morning, the bone marrow aspirate on Friday and we are just covering them up in prayers for the positive results we know God has in store. His right eye is looking so good and we are faithful that this ole chemo is ridding the beast. Please pray for peace and comfort for our dear Haynes Family. We all know how unnerving it is to wait to hear results from the doctors. I believe they see Dr. Furman later this afternoon for results of the MIBG. Please say an extra power prayer for our little man, Tina & Jeff. www.caringbridge.org/la/stanton

Tina, Emma Grace & I sat down yesterday morning to make Miss Christal a pink & purple prayer knot fleece blanket. (Duh! She was leaving today --- guess I better get it finished!) We took the opportunity of quiet time and had a good ole prayer session as we tied knots. (Emma Grace & I did have our own blanket making / prayer time when we made Stanton’s quilt while he was in ICU.) I wish I could fully relay to you what a blessing this continuous prayer time with “my” Tina and my baby became. Originally, we were going to say a prayer for each knot tied … yeah right, because I know you all know how I get a little lengthy. Well, my prayers are no different sometimes. We lifted so many, many of our family and friends up individually to our Father and it certainly was a cleansing experience that God had waiting for us even in the midst of just making a blanket. It took awhile to cut the strips and tie them, yet the prayers continued the whole time. See, you just never know where He has blessings waiting for us. I think it goes without saying that it made the bond even tighter between my sister Tina and let me tell you, if you could have heard the prayers from Emma Grace, oh my, oh my. At one point we had to stop while Emma Grace was praying because it was triple-meltdown. (I’m sure Chris is going to need to wash the snot & tears from Christal’s quilt.) It never ceases to amaze me that Emma Grace knows in her child-pure understanding the importance of each prayer, the deep connection between us and each person we were lifting in prayer, the reality of cancer and sad to say, the dear ones we were saying “hello” to in Heaven. At almost 4 yrs old, she shouldn’t have to understand her friends have gone Home. It was truly a beautiful time even in the midst of tears – happy or sad tears. Tina, thank you for taking this time to share this with us! My heart overflows with having a sister who loves and cares for our family as her own. That love is unfailing and unconditional which only comes from the Father who’s Light you carry each and everyday. No matter what is going on in your day. You cannot know how much I needed our “extended prayer time”. God knew, that’s why He sent you! I love you.

On Monday we had the great honor of meeting Marlo & Tony Thomas. Our friends at ALSAC had invited Emma Grace to be part of a photo shoot that is going to be in Parade Magazine. They used our little friend Tori, Emma Grace and ?? (sorry, he has a name of course, but I forgot it), an adorable little gentleman in a trio shot. They were so adorable. It was quite the blessing. On the way, I reminded Emma Grace who Ms. Marlo is – “remember her daddy is Danny Thomas, our friend who built St Jude, his picture is on the elevators, etc.” I’m just thinking she needs a reminder of this is not just “anyone” we are getting ready to meet. Well, when it came time to leave, Emma Grace headed to the refreshments table, grabbed a huge cinnamon roll (that I wouldn’t let her have BEFORE the shoot) and we say our thank you’s and goodbyes. Emma Grace went to Ms. Marlo to hug her neck, say thank you and in her purest of thankful heart she said, “Your Daddy built my St. Jude.” (Ohh! Be still my heart!) Ms. Marlo immediately agreed and told her, “You’re right honey, he did and it is YOUR St. Jude.” I know we have said it many, many times but we are so thankful for the incredible mission of Mr. Thomas, working so hard to get St Jude started and the marvelous people of ALSAC/St Jude who continue this same mission – loving & taking such wonderful care of our babies.

That evening we came back to Uncle Ronnie’s house to fix “Birthday Tina’s” supper. The day had gotten a little longer than I intended with doing the last minute photo shoot, getting platelets and just being at the Jude in general. Of course, I had to go buy all the stuff at the grocery before we could even FIX supper. Chris and I took care of that little venture – which believe me, is a STORY all its own!! She’s a hoot!! Let’s just say, we got really, really tickled as the day just did not go as planned. Hey, ya might as well LAUGH!!! Anyway, FINALLY we ate a little before 9 pm and Tina had Italian Crème Cake for desert – lots of candles to blow out of course. Thank goodness, the kids had supper a little earlier. (Thanks Tina!) Happy Birthday, Tina which was Monday – I know it wasn’t the best place in the world to spend your birthday, but we’re so glad you shared it with us!

Well, now … I know once again, my entry has been lengthy. There is still more I would like to say but I best close for now. Thank you so much for continuing to lift Emma Grace and her dear friends in prayer. You are such a blessing to our hearts and we thank God always for sending us you. May your day be filled with His Sonshine and know that the Hampton Crew lift you in prayer with thankful hearts!

"Taste and see that the Lord is good; blessed is the man that takes refuge in Him." Psalms 34:8

Only By His Grace – Emma Grace, Eli, Barney & Trish

PS… Daddy & Eli will be here Saturday and returning on Monday after our “sit down, game plan” visit with Dr. Santana. Please pray for their traveling mercies. We'll be looking for the big red truck - Can’t wait to see our BOYZ!!!

Sunday, September 12, 2004 1 1:44 AM CDT

PRAYERS FOR THE DUSTAN HEATON FAMILY:
As many of you know, Mr. Dustan has been in ICU and battling the beast. His Momma, Billie called me at early this morning to say that Dusty had gone Home. He had been asking all last evening what time it was and what day it was because he "wanted to go to Big Church". Mr. Angel Dusty arrived at Big Church with Our Lord & Savior at 2 am this morning. I just imagine he already checking on our St Jude Angels that he also adored and is fishing in the most beautiful of streams and hunting the plushest of fields as we speak. Please pray for his family during this difficult time. Thanks and we love you all!!

Friday, Sept 10th:
Well now .... OKEY-DOKEY!!!!

Let’s just start right off with the good stuff, eh???? As you can tell, I’m still wound to the gills as God is SO very good!! I’m just about to bust … Here goes ...

Emma Grace completed her necessary 6 week post treatment scans from the Philly trip and we got word today that FIRST, HER BONE MARROW IS CLEAN!!!!!!! HALLELUJAH, HALLELUJAH AND THANK YOU LORD!!!!!! AMEN!!!!! Now, SECONDLY, The MIBG scan shows that she responded well to the treatment and we have STABLE disease!!! PRAISE GOD!! CAN WE HEAR ANOTHER AMEN?!?!?!?!? Dr. Santana is actually out of town and in a conference with Dr. Maris, who did her treatment at CHOP in Philly. Trinka, our nurse practioner, said that she contacted Dr. Santana today and they (he and Dr. Maris) are discussing next course of treatment for Emma Grace. She did say that Dr. Santana was hopeful that Emma Grace would be doing another round of MIBG tx in Philly. We should know more possibly Monday when we see Trinka again for labwork. So, you know we will let you know, when we find out what’s next. We just aren’t going to worry about “what or when”, God’s already there and He already knows.

SO CAN YOU TELL WE ARE JUST THRILLED AND IN AWE OF GOD’S MIGHTY POWER?!?!?!?!? Once again I will have to reiterate ... God has this all worked out and we are following where He leads next.

Emma Grace is doing well, her ANC climbed slightly again up to 1700 today. She did have to receive platelets but that is only 1 transfusion for this week and you know we’re counting! She has done very well this week not being able to eat prior to her anesthesia or IV sedation. OH!! I have to share this with you … as you have heard in the past, she dearly LOVES the “milky stuff” better known as Propofol which is general anesthesia. Thanks to those daily radiation treatments where she received it every day for nearly 4 weeks. Anyway, they let her “push” her own Propofol for her bone marrow aspirate on Tuesday (of course, with the nurse anesthetist gauging the valve on her IV as to when to stop). So, when she started with her “fuzzy” feeling as she calls it, they asked her if she was doing OK. She rolls over on her back, thumb still pressing the “milky stuff” thru at a constant, steady stream and replies in her most drunken Arkansas slur “Uhhhhh yeeaaaahhhh, I’mmmmm getttttttinnn’ awwhitttttttlllle fuzzzzzzzzzzzeeeee!” And OUT SHE GOES!!! Her thumb and little hand still have a death grip on the syringe of “milky stuff”. Everyone in the room nearly got down!! It was hysterical. You have to know that we are always a little anxious anytime that she has to “go under” but to know she loves it so much, it makes her feel good (DUH!) and she goes out so easy, makes it all the more settling for Momma & Daddy.

Well, believe it or not, I’m almost too wound up to get all my thoughts gathered together for much more journaling. That is hard to believe, huh??? You cannot know what a comfort it is to have such faithful prayer warriors covering our family up in prayer, support and love. Your messages on the guestbook are so uplifting and it is so heartwarming to read all your notes of encouragement. We cannot even begin to know truly how many people are praying for our baby girl. It absolutely boggles our minds!! I’ve said it before and I’ll say it again … you all are precious gifts from God and the only way to describe how grateful we are and the feelings we have for you are written in our hearts. There’s just no way to relay what you have “written” there. Thank you for your continue prayers for Emma Grace and her many friends who battle daily.

Please say an extra special prayer for our dear friend Dustan Heaton who as we speak is getting closer to the Lights of Home. I spent the past two hours with them in ICU and it’s just so heartbreaking to see him struggle and continue to fight just as he has for the past 3 years. We are praying for comfort and peace for Dustan and his family, especially, Momma Billie, who faithfully is by her son’s side. He’s a child of God, he knows where Home is and he knows God is waiting with open, resting arms. Our earthly sadness is so human but there’s eternal rejoicing, complete healing and peace waiting for us all. God is on the Throne and He certainly has everything under control. May the warmth of His Sonshine surround you.

We love you!!

Only By His Grace – Emma Grace, Barney & Trish

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13

PS....HAPPY BIRTHDAY, MR. JEFF HAYNES!!!

Wednesday, September 8, 2004 3:17 AM CDT

Howdy Do Crew!!

It seems like “Monday” so I will be totally messed up this week (as if I have a great concept of time these days anyhow! Ha). Anyway, anyway … Emma Grace is doing really well. Platelets back down to 32,000 today after a transfusion on Saturday. Just part of the deal. Her ANC is gradually rising, up to 1500 today so we are continuing on the GCSF inject until Thursday?? Re-eval then. She had her bone marrow aspirate this morning and since platelets were a little low we had to go back to let them put a pressure bandage on the right side as it did not wish to stop seeping. It’s doing great now that did the trick and stopped the bleeding. Wednesday (uh hum! Today actually) is CT and Thursday the big MIBG scan. I’m taking lots of “deep breaths” and replacing the “worry thoughts” with prayers. God’s WAY bigger than all this and we’re hanging on tightly to His calm, steady Hand as He leads the way. So, it goes without saying that we’re asking for the power prayers this week as the next phase of treatment seems to hinge upon these tests and how well she is recovering.

Ok … (another deep breath, prayer …) ready, set, go!!

SO SO THANKFUL that Barney is able to be here with us this week!! Huge Thanks to the great folks he works for at Basic Construction!! I have to share this about Daddy arriving … Emma Grace talked to him on the phone early Saturday when he was finally on his way. (She had waited a whole two weeks and she wasn’t waiting no more! Ha!) She was so excited she SQUEALED going from room to room in our suite at the Grizz telling her Daddy, “I’ll be watching for you to drive in, Daddy!!” She doesn’t quite get that 5 ½ hrs is just a little longer than “a little bit!” I like to have never got her out of the window seat as she had nestled right in awaiting his big red truck to blaze in anytime. Later, she awoke from her Benadryl nap in the medicine room while getting her platelet fill up to rolling over to see her Daddy sitting by her bed. Needless to say, she soon lost the drowsiness the Benadryl causes … Daddy’s Here, Enough Said!!!

Last week Dr. Santana ordered donor kits to be overnited to my mom a.k.a. “Nanna” for our kids to be tested for possible matches to Emma Grace for bone marrow transplant. It has not been determined when nor if it will be needed, but we have the wheels in motion should that be part of our treatment plan. Barney & I are being tested this week and from what I understand our chances of being a match are about 25our kids’ possibility of matching are much less than that as they are half-siblings to Emma Grace. Shelly, Dusty & Eli went to our clinic at home to get their part completed so the samples could be overnited back to St Jude for analysis processing. Thanks Kiddos for doing your part to help your Sissy!! Also, Thank you Mom/Nanna for being the coordinator and transporter for getting this accomplished. Once I got the approvals needed to take care of Eli there as well, you took the bull by the horns and handled it. I love you Momma for all you do and for being you!!

An EXTRA special thanks to our friends at our home clinic, Wilma P Mankiller Health Center, for going the extra mile in making things run so smoothly on Thursday and as always, handling everything just perfectly. I know we have “out of the norm” requests sometimes with our Emma Grace’s treatment but you cannot know what a comfort it is that you all are always willing to make things work and there for us day or night. You are the best!!

We have settled back into our home-away-from-home at “Uncle Ronnie’s House” better known to Stanton as the Donald House. Sometimes it seems like we never left and we are so thankful for the wonderful “home” housing here. We enjoyed the Grizzlies House which is wonderful and they certainly spoiled us, (ok, Emma Grace! Ha!). But it is just a comfort to be back “home” with Sherri & the RMH family not to mention, Christal and Chris are right down the hall from us and Our Haynes’ are downstairs a short distance away. We still aren’t going to talk about Christal & Chris going home soon … really I’m so thankful Christal’s treatment is almost complete so they can return home. It has been such a blessing to spend time with them again … HATE the circumstances of all our being here but LOVE sharing more time together.

Saturday night we got a call from Tina @ the hospital as there was a very special guest wanting to meet our children. His name is Gebhard Barone from Austin, TX. He is a professor at University of Texas and has been following our children's websites for some time. He actually found Stanton & Emma Grace thru a link of a link of a link beginning with Angel Alex Scott, the Amazing Lemonade Stand Girl. What a huge blessing to meet Mr. Barone as first, God placed a complete stranger into our lives who diligently is praying for not only Emma Grace & Stanton but many of our children. And especially, that he took time out of his long, busy road trip from Philadelphia to Austin to stop to meet our families. Thank you so much Mr. Barone as you certainly made our days with your kind "happies" for our children and most of all for your love, concern and prayers. We never know who God is placing in our path and we thank Him for chosing to share you and your family with ours!!

We spent Sunday night in Cleveland, MS with Miss Sarah Claire & family. We made it in time for church and Emma Grace bust thru the doors like she was home or something, plopped herself in Mom Monica’s lap and was happy as a little lark. During the first song I pointed out Mr. Bill singing in the choir. Emma Grace no more let her eyes contact him until she was waving at him, whether she was supposed to or not it made her day. Of course, Mr. Bill immediately waved back as did Mr. Tommy. I do believe they were a little surprised to see us show up “out of the blue”. Emma Grace made it clear to Mr. Bill during lunch that she wanted to go to his house to see Prissy, Baby & Cocoa (Bill, Patty & Les’ very sweet & very spoiled housecats.) It’s really odd because normally Emma Grace won’t have anything to do with cats, period. But that’s not the case with The Avritt’s cats. She LOVES them and always asks Mr. Bill on the phone how they are doing. Anyway, she got her wish to go check on the cats; they stopped at the duck pond for a feeding or two and of course, rounded off the Sunday afternoon with a trip to Wal-Mart. I’m not sure that Bill & Patty knew what they were in for taking Emma Grace to Wal-Mart!! Needless to say, they like to lovingly spoil our baby as well. She came in with Barbie band aids, (you never know when you need to be stylin’ with a nasty boo-boo!) and a cool basketball game called “Hot Hoops”. Well now, most nearly 4 yr old little girls would maybe pick a Barbie or Polly Pockets as we are now into but nope, not Emma Grace – “Hot Hoops”. Coach Gerita would be proud, ya think??? HA! Well, once back to Mimi Sharyn’s, Emma Grace is pretty attached to Monica & Sarah Claire’s hip. She made it real clear the day before we came down that she was “spending the night by herself” at Monica’s. (you think maybe Monica spoils her a little as well?!?!? More like A LOT!!) They had a grand time … of course, Emma Grace had to make up a story or two, kept the entertainment rolling and just had Sarah Claire & Monica to herself. Girl Time! The boys, Tucker & Hays, stayed with us at Mimi Sharyn’s as Jackson, Mimi's other grandson, was also there. Emma Grace came in Monday sporting a new outfit dear Monica had bought for her. It is just precious!! We had a great time in Cleveland with “our family”. It always seems too short but ALWAYS is such a blessing. Thanks to our Cleveland Family for once again making memories that last an eternity!! Also, thanks Morrison Chapel Baptist Church for always welcoming us with open arms to worship with you and especially, for your continued prayers for our Emma Grace and her St Jude brothers and sisters!! We love you all!!

Last week was quite WILD to say the least, with Stanton going into ICU a week ago put things in a different gear and my time seemed consumed with either visiting when I could and constant prayers. As you might guess, Mr. Stanton is just one of our kids. It never ceases to put me in total and humble awe of God’s mighty power. He had control of Stanton’s crisis and continues to show His mighty, yet gentle Hand caressing and holding our dear Stanton, Tina & Jeff close to His heart. Thank you Lord for providing exactly what is needed, just the right time it’s needed.

When we got back to Uncle Ronnie’s house on Monday, some dear folks from Germantown Baptist Church brought Emma Grace a lovely handmade prayer blanket. It is gorgeous and they let Emma Grace pick the one she wanted out. Christa, mother Rosemary and a precious St Jude family we had previously only met via our children’s websites, Todd, Dawn & little Mason Pierce came to visit and make the special delivery. Many of you know Angel Shae who bravely battled but went home to be with Jesus about 3 ½ yrs ago. It was indescribably heart touching to have the Pierce Family come to meet us and what wonderful folks they are. What incredible strength God gives them to be such living testimonies to His word and His work. It’s just like Dawn expressed during our visit that her heart is always here at St Jude and yet strangely, it must be so comforting for them to stay connected and encouraging families who are walking the same path they have. What a true blessing they are to us and thank you all so much for the beautiful quilt that is obviously stitched with love!! Also, thank you Dawn for meeting Tina & I at Velvet Cream in Hernando!! We loved the visit!! Oh my, I could see that great little dairyette become habit forming!! But it sure was therapeutic!! HA! (Thanks Tina for trusting my “Navigational Abilities” to get us there and back!! It was also great for “T-n-T {Tina & Trish} Time” that I needed!)

Great news just in today!! A perfect donor match has been found for Mr. Stanton’s upcoming bone marrow transplant!! What an answer to prayer!! Hallelujah! Next is to make sure this very gracious stranger is still willing to give for our little man and I’m quite certain God’s got that all worked out, whatcha think?? Stanton is starting the scans/tests tomorrow for Stanton’s game plan. Please continue to pray for the guidance needed for the doctors, Jeff & Tina to get things in place for Stanton’s next phase.

Uh-hum … let me just say, big sigh of relief and Thank You Lord for answered prayers of getting Christal & Chris flown to and from Florida last Friday and today, respectively. For those of you who know Chris, she’s Mrs. Practicality!! Well, she’s also an incredible Momma, full of strength and doesn’t put unnecessary worry where it’s not needed. She lets God just handle it and stays so cool and collective about everything. Here she is back in treatment with our dear Christal, PREGNANT, rocking along, taking care of biz, flies to Florida on Friday with Hurricane Frances Flouncing about, and PREGNANT (did I stress that main detail already?!?!?!). Every time I talked to her I was WAY more stressed about this hurricane deal than she was so I just kept praying and felt so much better to hear they had landed “all’s well” back in Tennessee-land again. Oh by the way, Chris, I asked God to let you rub some of that “calm, cool, collective” stuff off on me!! It was so good to have them back and Emma Grace was glad to see “her buddies” again!! She had lots of hugs to spread around.

Carol, Tori, Alli and Amy are here doing chemo and MRI on Wednesday. It’s good to see Tori doing so well and the girls have sure had fun playing. They arrived here last Thursday and away from the hurricane headed their direction again back home. By the time they get back hopefully, Hurricane Ivan will be headed out to sea and not Florida’s way again.

We also got to see our dear Bailey & Kelly King last week. They were here for their “jet-setting” chemo, spinal tap visit. In one night, out the next. It’s always good to hug their necks and Bailey is doing really well, looks fabulous as does Mom Kelly. Please keep Kelly in prayer as she will be having follow up scans done in a few months on the spot that is “suspicious”.

In the midst of “Scan Week”, it seems we get caught up in our anticipations. God is so gracious to give us friends who stand – physically or spiritually – beside us unconditionally; praying, encouraging and reminding us, just as God does, we are never alone. “Where can I go from your Spirit? Where can I flee from your Presence?” Psalms 139:7 He’s always right there. Thank you Lord for the love, strength, peace and comfort You send unconditionally.

Well, it's getting way late and this night owl must call it a night. I apologize as I know I have left someone or something out I certainly intended on sharing and I know I have skipped back and forth quite a bit trying to “catch up”. (I can hear Mr. Jeff now, “well if you would update more than once a month, you wouldn’t get so long winded!!!”) I thought I better say it before he did!! HAHAHAHA Please know that we love you and thank you so much for the continued prayers for Emma Grace and her St Jude brothers and sisters. Everyday we realize that cancer is no respecter of race, gender or age – it’s just vile and vicious. But our God is bigger and our trust is in Him for His plan. Your faithful prayers mean more than you can ever know. We love you and thank God always for sharing His very best with our family!! May you day be filled with His Sonshine!!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

Please see the previous entry for the prayer requests along with their websites.

Saturday, Sept 4, 2004 9:11 AM CDT

WHOOO WHOOO HALLELUJAH!!! STANTON'S OUT OF ICU!!!! AIN'T GOD SO GOOD?!?!? They moved him to the 2nd floor last nite and he's doing good - possibly out by Tuesday!!! Thank you so much for your continued prayers!! Will update more later ... but in brief: Emma Grace's ANC is still holding at 1000!! YEAH! She will probably get platelets today as they were 21,000 yesterday, we're moving to Uncle Ronnie's House today, Daddy is coming in this afternooon (DOUBLE YEAH!!) ... LOTS going on!! Give you the scoop later! Our hearts are full with the love, grace & mercy God is showing especially with the healing of our Stanton this week. Thanks again and love to all!!

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Hey Crew!!

Ok … so I didn’t update as I had hoped “the next night”. As you can presume my intentions we really good and one would think I would have an over abundance of time on my hands but then again, knowing Emma Grace as you do, she doesn’t slow down much. (I certainly did get spoiled having Barney here the first go round to level things out.)

First, let me update you on our Stanton – last word from Momma Tina this evening around 9 pm is that he is improving but still running a fever of about 101. His blood pressure has improved but still not normal and they are starting to wean back the BP meds slowly. The prelim cultures are negative which now does not explain the problems earlier today. We pray the Team is able to get to the bottom of Stanton’s problem and address it promptly. Tina & Jeff are incredibly strong and are hanging on tightly to God’s Hand letting Him carry them through this obviously unnerving and frightening situation with their baby boy. I was able to spend a little bit of time with “my family” thanks to Momma Chris & Christal who took Emma Grace to play with them. It is such a helpless feeling not knowing what to do but I pray just being there with all the love & support we can provide for them helps in some small way. Tina is so very right in her analysis that everything can change in a blink of an eye here. Tina’s Mom & Dad came in this afternoon with Bubba Hayden which was a huge comfort for everyone. Our little man is still fighting so very bravely and our prayer is they will be out of ICU soon and back on the 2nd floor. Please pray for our dear friends and for God’s undying love & strength to continue to carry them.

Happy Late Birthday, Big Sis, Shelly!! Aug 29th … sorry I didn’t post prior to your birthday!! It was good talking to you and Dusty late Sunday night while it was still your birthday!!

Emma Grace is doing well … I got suspicious that her platelets and possibly hemoglobin were falling on Sunday so I took her into the Medicine Room a day early just to check her out. Sure enough, Momma’s gutt feeling was right again – her platelets were down to 10,000 (YIKES! That’s low!!) and her hemoglobin 7.7 so it was time for a “Fill ‘er Up”. We spent 5 hrs in the medicine room getting “topped off” and she seems to be better. Dr. Santana did another CBC on Monday morning to see how she was holding since the transfusion and she is back up to 88,000 and 10.7 platelets & hemoglobin, respectively. Her ANC has dropped from 800 on Sunday to 500 on Monday so we are back to giving the G-CSF injection and wearing a mask as her immune system is falling fast. We are doing lab checks 3 times a week now M-W-F. I’m curious to see where she is at tomorrow.

Dr. Santana & I discussed the upcoming scans as I had wondered whether they would do her bone marrow aspirate with her counts being so low and he wants to do the procedure as scheduled next Tuesday. Her CT scan is Wed and the MIBG scan on Thursday & possibly again on Friday. The MIBG especially is a biggy for us to see if the nuclear treatment has shown a promising and positive response. Please say extra prayers for Emma Grace’s upcoming scans/tests next week and for her ANC to recover as quickly as possible without having to use her banked stem cells for rescue.

We also discussed the possibility of another bone marrow transplant, this time with an outside donor. He felt she would probably have one but we are holding off making any “definites” until we see how she fairs with this recovery and also the results of her scans. He did order the blood kits to be drawn from our kids, Shelly, Dusty & Eli, at home this week and then shipped back to St. Jude for their process of analyzing them as possible donors. Full blood sibling’s possibility of match are about 25nd half siblings are even less but we are going to test them as well as Daddy & I for this process. Please pray that when it’s time for this phase that a perfect match will be found.

Today has been a roller coaster to say the very least. First our Mr. Stanton which hit pretty hard – knowing I had see them and how to manage Emma Grace as she couldn’t go upstairs to ICT. Then we shared our story at noon with some wonderful folks at TECO Barge Corp who are supporters of St. Jude. They are so sweet and we thoroughly enjoyed getting to visit with each of them. Emma Grace was in “prime form” today and let’s just say, she got a little “too comfortable” with these dear folks that she obviously sensed are walking this journey with us with their generous support of St. Jude. As the great folks at TECO Barge Corp soon found out, there is NEVER a dull moment with Emma Grace around!!! Thank you so much for your love and support of “our children”. Words are very inadequate for your overwhelming kindness of caring for our children in your support of St. Jude. It was certainly a blessing to meet each one of you!!

I’m going to try to catch everyone up in brief where I left off last week … Miss Sarah Claire, Mom Monica & Mimi Sharyn were in Mon-Wed last week and what catching up we had to do!! As I mentioned, Sarah Claire’s scans are clear!!! Praise God for His continuing to touch our precious Sarah Claire. We had a great time and Emma Grace would not get any farther than she had too from their side the whole time they were here. (Stanton did not quite understand having to “share” his Emma Grace … but he did rather well). Sharyn & Monica bought Stanton a “spiderman” pj outfit and got Emma Grace black leotards, hose, slippers and a wonderfully colored scarf skirt & matching ponytail holder. Emma Grace thought she was a dancing gymnast or maybe even a “bubbling” ballerina. (but that’s quite a stretch!! Ha!) She danced and swirled and danced some more. She is so tickled with her new outfit and wants to wear it EVERYDAY!! Thanks Monica & Mimi for the gift of your friendship which we know is straight from God!!! We love you!!

Emma Grace & Christal have been trying to catch up on lost time together. We actually had a “sleep over” as Christal & Chris call it. (We call it “bunking parties” in Arkansas, eh?? Ha) We had our “girls party” at Christal’s room at Uncle Ronnie’s. We had a great time!! These two are so precious together. Christal is so mannerly and laid back (unlike WhistleBritches – as she put a WHOLE NEW MEANING TO THAT NICKNAME TODAY DURING THE LUNCHEON!!!!) We would all rather that we are just here “visiting” but God obviously has other plans for us and it’s so nice to have some of our “old crew” here with us. If one is down, the others are lifting and vice versa. It’s so amazing to see God’s Hand in every situation – big or small. Chris & Christal will be going home in about 2 weeks but we’re NOT going to talk about that right now – just can’t go there tonite with those thoughts, the day has been too much already. We pray that God’s wiping out all those cancer cells that may be trying to “hide out” and that the radiation is blasting them away!!

We had the wonderful blessing of Nanna, Poppa & Bubba Eli coming for a visit this past weekend. Talk about a little girl THRILLED to see them just as Momma was!! We went to the RMH for dinner as the Lauren King Ministries was serving and having worship services after the meal. It was absolutely heartwarming!! The food was fantastic as usual but the worship was even better. God met us in that little ole chapel in Uncle Ronnie’s house and what a service it was. Emma Grace & Eli sang “Amazing Grace” (Emma Grace’s fav, ya know!) and it was so tenderly precious. It was so nice to see Mr. & Mrs. King again and we had a wonderful time in the Lord! Thanks so much for continuing your mission of sharing the gospel, continuing your work in Lauren’s memory and bringing so much joy to everyone you all meet! You are truly gifts from God!

We took the kids to Libertyland on Sunday and had a great time. Nanna & Poppa wanted to be home before “dark thirty” so they left around 3 pm. Eli & Emma Grace had a great time riding rides and telling tales. You know those two have a hard time topping the other!! Hahaha! Eli rode several rides with Emma Grace and even got Momma Trish on a roller coaster or two. (You’d think I’d have enough emotional roller coasters without throwing in a real one!!) We all had a grand time … it just never seems to last long enough!! We love you all and miss you bunches!! Thanks for making our weekends by just being here!!

Please know that we love you all more than we can ever say and knowing that you continue to beckon God’s Throne on behalf of Emma Grace and her precious little friends touches our hearts beyond explanation. May God’s Sonshine continue to warm your hearts for all you do – not only for our family but all those who see His light in you daily. Have a blessed day!!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

PRAISE!
Dr. Stephen, Nurse Ashley’s sweet hubby, was in the hospital over the weekend with sympton’s of chest pains. Thankfully, the Angiogram revealed everything to be good and he was released on Monday afternoon.

All our St Jude family who continue to be in REMISSION!!! Praise God!!

All the Marvelous & Amazing folks – doctors, nurses, staff – of St Jude as well as our friends at ALSAC who go ABOVE and BEYOND with their heart driving mission to give our children the absolute best of everything. You are the famous “unsung heroes/heroines” in our book. Hang in there & Keep looking up, it’s just around the corner!! Thank you for all you do & We love you all!!

PRAYER REQUESTS:
Stanton – in ICU as of 8-31-04 due to high fever, rapid heartrate, high fever and low blood pressure. So far the cultures have came back negative as to any infection/bacteria. Please pray for Stanton to continue to improve, for God to continue to hold him close to His heart for healing and the wisdom for his Team to determine the cause for this problem. Also, for Momma Tina & Daddy Jeff and Bubba Hayden who need extra doses of strength & comfort. www.caringbridge.org/la/stanton

Emma Grace – upcoming scans & biopsy Sept 7th – 10th. We are praying for a positive response from the tumors with the recent MIBG treatment. Also, for her immune system as it now at 500 and for rapid recovery.

Christal Reynolds & Momma Chris – Christal is about ½ finished with her radiation – yeehaw! Momma Chris is feeling much better. Christal’s slow but continued progress/therapy with her balance, speech and facial movement recovery. http://christalinfo.servemp3.com

Ben Bowen & Family – the CT shows the tumor is growing again but they are still going to do radiation to hopefully gain them more time with their precious boy. God’s still on the Throne. www.bens-story.com

Dustan Heaton – still at LeBonheur ICU and has been place on a vent due to the “good lung” is now showing same signs of not working. They are not sure if its tumor, bacteria, what??? The doctors are trying to keep him as comfortable as possible.

Spencer – they have confirmed two tumors definitely have come back. They are going to rescan in a month and re-evaluate what’s next.

Kenny Christman Family – Kenny went home to be with our Lord last Thursday due to heart attack. You may recall Kenny’s granddaughter, Kelsey age 18, passed in an auto accident November 2002. Please remember this dear family.

Ms Wendy, Transplant Coordinator in BMT @ St Jude – who bravely continues to fight her cancer battle and is always an inspiration to everyone she meets. We love you Ms. Wendy!

Traveling mercies for Ms Shelly & Christopher Wayne Morris as they continue their promotional tour out west. www.christopherwaynemorris.com

Eli at home staying with Nanna & Poppa – Bubba Eli's email is smile9255@aol.com

Daddy Barney is at home, holding down the fort and working all the while “his girls” are in Memphis. Honey, I love you and know you are a much stronger person than I to try to keep everything rolling with your heart in Memphis. You’re the best part of me … Counting the days for you to come back to be with us for Emma Grace’s tests next week. We love & miss you boys bunches!

All our friends who continue to fight their battle daily and for our dear families who live each day with their sweet Angels dancing the streets of heaven.

Wednesday, August 18, 2004 10:16 AM CDT

Hello Dear Friends & Family!

Ok … ok … it’s been nearly a whole week since update. Apologies as always and as you will see by the following entry, it’s been pretty bizzy but we’ve certainly are having fun. Bear with me – you know the routine, grab a cup of coffee or pop and sit a spell when you get a chance. (SMILE)

Life at the Hampton House is steadily rocking along. Daddy is busy dump trucking and Emma Grace has made it a daily ritual to ask him how many loads he hauled! Ha! The days of “moving back to Memphis” are approaching quicker than I like to think about. This Friday to be exact. (yikes!) Eli & Emma Grace are keeping things quite “eventful” just with their everyday bubba/sissy activities. Both are always so anxious to see each other when they are apart and it never fails where siblings are concerned that anxiety is always short-lived! I keep reminding myself the fusses as well as the brief episodes of cooperation are still filled with love. One afternoon as they were supposed to be helping do some chores, they found my collection of costume wigs. Eli was sporting a BRIGHT RED, Ronald McDonald style wig and Emma Grace found the infamous long blonde, kinky wig that some of you may remember seeing me in from time to time. It was quite a hoot and you might know I was OUT of film. UGH!! The visual ought to give you a good chuckle anyway!

Emma Grace counts are starting to fall slightly but her ANC is still holding good. It’s just the platelets & hemoglobin dropping at this point. We’re keeping a close eye on her and will return again on Thursday to Dr. Muriel for another lab before returning to St. Jude. Dr. Santana wants us close when her counts “bottom out”. Looks like we’re headed in that direction at a slow steady pace. But for today (and that’s all we have to be concerned with, right?), we’re good!

Barrett & Gwen Curtsinger are leaving with us Friday night to go to Memphis and are all going to donate platelets at St Jude Saturday. As many of you all know, when their counts are low our children receive lots of blood & platelets. I have to admit I cannot begin to count how many times Emma Grace alone has received transfusions since her diagnosis. Thank you Barrett & Gwen for taking time to give so lovingly to our children who need you most!!

You know how Emma Grace has gotten quite attached to her dear buddy, Jake McBride, at KIX104. Well, anything and I mean, ANYTHING, that Jake says or does or suggests means that it’s “OK” where she’s concerned. When Jake introduced her to his new friends, Christopher Wayne Morris & Ms Shelly, and placed his “stamp of approval” on them, they were on Emma Grace’s list of acceptance as well. I can hear in her little mind, “Ok, if JAKE says these folks are cool then they’re alright with me.” (smile) Well, from the first union of Emma Grace and Christopher Wayne a.k.a. CWM, they were immediately friends. She listens to his music all and I mean ALL the time. If she were old enough to be running the roads doing PR, she’d be doing it for him, trust me. Well, she has been excited ever since we came home-home as we knew that he would be back in Tontitown Grape Festival for the concert last Friday. (We once thought we would have to miss it since we were supposed to be in Memphis.) God just worked that out, didn’t He??

Anyway, we are on our way to do her labs last Thursday and she is listening to CWM and SINGING EVERY WORD TO THE TOP OF HER LUNGS!! She wanted to call him to tell him she would see him at the concert Friday night. So, I dialed the number for her and she got their voicemail. She left her message and hung up. Looking out window while going down the road, I could tell she was in deep thought. She finally said, “He’s so sweet. And that song (Something Good is Coming Down) is about Jesus. He’s WAY UP THERE (as she’s pointing out the window to the clouds)” I agreed with her on both perspectives. She added, “Momma, you know why ChristopherWayneMorris (she runs his name all together) is so sweet?” Why, Baby Girl? “Because he has Jesus in his heart.” Whew! What an insight, obviously straight from God, from such a small child!! “And I have Jesus in my heart, too,” she continued. Yep, tears are streaming down my cheeks by now. Out of curiosity I wanted to know who else she would say has Jesus in their heart, so I asked. “Jake McBride,” was her immediate answer. She has made such a priceless connection with these two dear men and it is so amazing that she doesn’t see the outward appearance, she sees their hearts. What a lesson for us all.

Well, Friday night finally came along as she had patiently waited. She was quite restless until she saw Christopher Wayne Morris. She went right to him and held his hand quietly while he spoke on the radio remote with Jake & Allen. I was concerned that she wasn’t going to let him go on stage without her, still holding his hand, while he tried to perform. She finally gave in and sat up front with us. The whole concert she kept scooting her Scooby Do lawn chair closer to the front of stage so she could have the best seat in the house close to her friend. And of course, she sang every song right along with him. His songs are so heartwarming as he delivers them straight from his heart. Nashville needs more guys just like him.

It was so good to get to see him & Ms Shelly and we had the added blessing of them inviting us to breakfast the next morning before they left out. We had a great time and it was nice to just sit and visit for a change without interruption, except for Emma Grace dragging him to the checker table to play before breakfast. CWM ordered oatmeal & bananas, so what do you think Emma Grace ordered?? You got it … the very same. Monkey see, Monkey do! When it came time to leave, Emma Grace really wasn’t ready to say goodbye. I’m convinced if she thought she could get away with it, she would have loaded up in their rig and kissed me goodbye! Ha!

Emma Grace & I made a blazing trip to Memphis after our special breakfast with CWM and Ms Shelly Saturday morning. She had been invited to attend Memphis’ first Princess Tea Party for the St Jude little girls. Originally, we were going to be “residing” in Memphis during this time but since we had gotten our leave to return home, we made the trip back for the special occasion. (more about that in a bit …)

Our first stop in Memphis Saturday afternoon was to meet Miss Laura, her Dad better known to Emma Grace as “Hajar” and Laura’s sister, Jennifer & her beautiful daughter, Abby. Mr. Hajar was in town for an ALSAC event so it worked out where we could meet him finally. After Emma Grace, who had changed to her altered-ego personality “Ellie Mae”, saw precious, Abby everyone else was chopped liver. She LOVES babies and was totally taken with little Abby. Miss Laura captured some wonderful pictures of the two so I’m anxious to see them. We had a wonderful, yet brief, visit as Emma Grace kept running out the door of the Marriott to check out the fountain. UGH!! She is so strong-willed sometimes and would not listen to anyone about staying in the building. I think the more I try to “rein her” the worse her stubbornness gets!! Also, I attribute her “roaming” to the fact she gets so comfortable with being able to trust everyone within the walls of St Jude it’s hard for her to realize that outside those secure walls, it is not always safe. I think she made Mr. Hajar a little nervous wanting to stroll the streets of Memphis. Anyway, we had a great time and are so thankful for the opportunity to meet Laura’s sweet family.

Stanton had gone home-home on Thursday so the RMH, “Uncle Ronnie’s house”, seemed a bit quiet without our little man there to greet us. I’m so thankful they had the chance to sneak home-home as it had been 10 weeks!!! Whew!! What a much needed break! Don’t worry Mr. Stanton, Jeff & Tina, we will be back before you know it and I’m not sure “the Donald House” will ever be the same!!

We had the wonderful hospitality of Miss Christal & Chris as we got to stay with them in Uncle Ronnie’s House Saturday night. Slumber Party! Yeah, well, I crashed early. Looks like Chris wins that prize! The girls had been planning for weeks to attend the Tea Party together so everyone was quite excited the weekend had arrived. Emma Grace wanted to stay with Christal “lots of nights” at the Uncle Ronnie’s house. Since Ellie Mae had showed up I knew that leaving would be a challenge but I would deal with that on Sunday. It was so wonderful to see our dear St Jude family as our Christal had had yet another surgery since we had seen her last. She is doing very well and has started her radiation treatments. And WOW! Chris did not tell me that she was REALLY starting to look pregnant!!! That was a surprise because it didn’t seem that long since we’d seen them. Amazing what a couple weeks does for the baby belly starting to show!! We enjoyed just hanging out in the room, watching the Olympics and I got the biggest shock and thrill of FEELING THE BABY KICK!!!!! I did the “Arkie Happy Dance” all over the room after the little dumplin’ kicked my hand. Emma Grace had been inquiring about Chris’ belly having a baby in it … (how do I explain that one??? I know she understands cancer far more than most but I don’t think I’m ready to go into this subject!!). Anyway, while Emma Grace impatiently waits for the baby to move, she gives up and I automatically take her place. Literally, 5 seconds later … WHAM!!! It was totally a Kodak moment!! Little did I know, until AFTER the event, that I was the first to feel the baby move other than Chris. Now, I really am feeling like the privileged St Jude sista/mom!! What a special moment for us all. Thanks Chris, as if our hearts weren’t already attached because of our baby girls, now, I can always treasure getting to feel your little miracle waiting in the wings, so to speak. Can I spoil this child as well??? Just wondering …

Now … it’s Sunday and the Princess Tea Party is finally here. WHOO WHOO! First, and foremost, we want to thank the Mattingly Family from Kentucky who made this all possible. They started the Princess Foundation, www.princessfoundation.org, in memory of their precious daughter, Victoria, who passed from a rare cancer at the tender age of 6. They continue her dream and wish of being a Princess by sharing such a special, pampered event with other little girls who face life threatening illness. You’ll have to read their website when you get the chance. It’s a beautiful, heartbreaking, yet heartwarming story about precious Victoria. (Kleenex Alert!) Thank you so much Mrs. Shelly for sharing your daughter’s memory, her wishes and dreams and your overwhelming love for our children who so deserve to be spoiled by a beautiful Princess Day!! Also, thank you Sherri @ RMH for making this possible for Emma Grace to attend. You are a treasure!!

Mrs. Shelly and her friends came all the way from Kentucky to make our little Princesses shine!! They bought them beautiful, formal tea party dresses, a real Princess tiara, a gift bag of happy goodies, did their makeup, hair and then we all awaited their grand entry. The girls – The Princesses – came down the staircase of floating bubbles being individually introduced, escorted to their special table beautifully decorated and adorned with Tea Party treats. It was absolutely gorgeous!! They had a photographer on hand who took photo shoots of Mommy & Princess and also, just single poses of our Princesses. It was straight out of the storybooks!! The girls had a great time and sure enjoyed getting to dress up and being pampered. I was SO thankful that we were invited to attend and hands down, it was worth the overnite trip to Memphis to see Emma Grace, Christal and the rest of girls in their crowning glory. Also, it was nice to make a trip to Memphis for a change that was just for fun. Emma Grace is still wearing her “tara” as she calls it and telling everyone she meets about the Tea Party. Thanks again for making not only our girls hearts smile, but ours as well!

After the Tea Party and changing back into travel clothes – much to Emma Grace’s protest as she wanted to wear it all the way home – we sat sail for NW Arkansas. Of course, as I anticipated Emma Grace was none too thrilled that it was time to leave. She made it clear that she was staying. Bless her heart, she just got there to see her Christal and now it’s time to leave. Besides the fact, that Memphis is home to her and she’s comfortable there. This is truly a blessing as I would HATE to think of fighting her to come back to St Jude all the time. That’s a true example of God’s mercy and grace in taking care of our little girl to make things as easy as He can for her. Well, my little darling, we will be back soon enough and I pray her tune is still the same.

Eli’s special event of the long awaited debut on KKIX 104 was Tuesday morning. Eli probably did not sleep a wink and got up at 4:30 am to ride in with Daddy who has to be at work at 6am. When I called “the Boyz”, Jake & Allen, to check on Eli, they were having a blast!! I could hear Eli bursting in laughter in the background while they are telling big stories. Well, for those of you who did not catch the morning show, oh my goodness! A little more information than Momma needed to deal with so early. The topic was “How old does your child need to be in order to go on their first date alone.” Oh brother, is my first thought!!! Could there not be another subject matter since girls are first and foremost on my boy’s mind at this point?? (My silent prayer is ‘Lord, please remind him before he speaks that there are FCC regulations and that I have tried to raise him to be a gentleman!’) He did as well as many 12 yr old boys would. He seized the moment of having everyone’s attention. The first thing I recall hearing is him stating he would like a date with Jake’s daughter, Ashley, (who is in her 20’s … hello!!!) and also, asking if there “are any girls out there that would like to go out with him?”!! Oh no!! Please don’t let him give our telephone number over the airwaves!! Jake asked him when he thought he should go out on his first date, alone. (34 is my silent answer) But Eli replies that “13 or 14 would be a good age” and he thought a perfect first date would be “taking her to the movies”. “You need to be sure to pay for their movie ticket, buy them some popcorn and if you don’t have enough money for two drinks, just get two straws.” (Oh please … can I listen to more this early??) He continues by saying that “if you want to get a kiss, be sure to do it during the previews so you don’t miss any of the movie. But be sure to ask, so you don’t get slapped.” Let me just say, it went downhill from there. As my face is getting redder, he said he didn’t “think it was a good idea to FRENCH on the first date.” (OK!!! NOW I KNOW I”VE HEARD ENOUGH!!!! There’s only so much a Momma really wants to hear at 8 in the morning with only two cups of coffee under my belt!!) Eli came in with lots of fun tales, still laughing about his radio interview (and last! Ha!) and the wonderful memories of getting to spend the morning on the airwaves with Jake & Allen. I’m quite sure they instigated much of Eli’s responses but I’m convinced because I know my son, that he really needed no help with his imagination on this subject!! Thanks so much Jake & Allen for giving Eli such a special morning that he will never forget. (Nor will I or my GRAY HAIR!) What good medicine for my little man who has had to grow up much quicker than Momma & Daddy would like during the illness of Emma Grace. He bravely stays on the “side lines” knowing that Emma Grace’s treatment takes us from home so often in battling the beast. He gives up so much but never complains much. Eli, I love you so much and am proud of your bravery. And after your radio debut, I’m certain I’ll never let you date without your sister trailing along until you’re at least 34!!

Laughter is always good medicine for us all and often I have to be reminded to let the worry go, enjoy today, let my children be the special, unique little individuals that God made them, laugh a lot and let God take care of what He’s control of anyway. Who am I to think I need to help God with anything? It’s too easy to let that “worry” creep back in because we’re so very human. But God tells us over and over again to always give it to Him, period. (Momma Tina and I are once again thinking on the same lines. I think God is reminding us both of the similar lessons He continually keeps showing us. Sorry Tina, I didn’t mean to cover the same subject but this is where God put us, right?)

What I share today from Charles Swindoll’s “Bedside Blessings” for August 18th speaks volumes to my heart and once again is that same reminder of God’s awesome power, His handling of our worries and problems and His undying, unconditional love. Mr. Swindoll writes, “Nothing surprises God. What puzzles us is permitted by our Lord, for reasons too profound to grasp. It is put together in the counsel of His own will so that it fits perfectly into His plan for His glory and for His purposes. As His servant, I say in response, ‘I will not fear. Though I don’t understand it, I will not fear. Though You take something that’s deeply significant to me, though You allow a catastrophe to strike, I will not fear. I will not blame, I will not doubt, and I will not question.’ Psalms 46:10 Be still and know that I am God …” Once again my reminder; God always on His Throne, God always in Control. Thank you, Lord, to take those deep breaths – letting go, letting You handle our worries!

Thank you for your encouraging guestbook entries which continually bless our hearts. We know God is ever present and that you too are walking hand in hand with us thru this journey. It never ceases to amaze me His gifts of new friendships and the strengthening of existing and valued friendships that have become through our baby girl’s illness. Our families are priceless treasures that we could not begin to express our gratitude for all they do. And we it comes right down to brass tacks, we’re all family – we’re God’s family. We thank Him daily for His blessings of you!! We love you … Keep looking up and have a blessed day!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

Prayer Requests –
8/19/04 Update - Got a call from Carol, Tori's grandma, who said John had called & Mr. Spencer has relapsed. She didn't get a whole lot of info so all we know is that there are two main tumors. The drs. are forwarding the scans to Dr. Kun @ St Jude for review and try to determine what can be done. Please pray for God's guidance for the team of doctors and mercy for our Spencer. He has been thru so much already. Also, for Spencer's family for strength & courage with the decisions they are facing.

Stanton's counts to recover so they can start another round of chemo poss on Thursday
www.caringbridge.org/la/stanton

Christal is doing radiation, continuing to improve but having daily homesick meltdowns. Also, Momma Chris’ pregnancy. http://christalinfo.servemp3.com

Ben Bowen – continuing to battle on a daily basis. They are managing his pain but the pulse has still been a concern. The team of doctors is meeting today to discuss options for Mr. Ben. Please pray for Tom & Jennifer in making the choices they are faced with today.
www.bens-story.com

Bill Estep – my best friend, Darlene’s, daddy had a horseback riding accident last Thursday evening resulting in a broken shoulder blade, broken femur right below the hip, bruised ribs and lung. He had surgery Saturday and is doing better. Hopefully, will be in a regular room today.

Johnny & Betty Slaughter Family – as their families handle days ahead and taking care of matters. An expense fund has been set up at Simmons Bank to help with final expenses.

Amy Bailey recovering from shoulder surgery & doing very well.

The many children who bravely fight the beast of cancer.

The strength & courage for our dear families who live daily without their sweet Angels.

Thursday, August 12, 2004 7:39 AM CDT

Blessed Day to All!

Things on the home-home front are going good. Emma Grace is in PRIME form and still doing really well. Her labs have been holding steady as her energy level! Whew!! She does get a bit tired at times so she takes “power naps” and is ready to roll again. We’ve been enjoying time at home-home and slowly making preparations to pack & leave next week to “move back to Memphis”. The housework seems to be ever piling up and I’ve made jokes for years of justifying being out & about and “it” (the housework) would always be there when I’d get back. Well, now with our “move to Memphis” nearing I decided I’d better get on the stick before it came to the “MAYDAY!!” status!! The good thing is we’re still mostly packed as I never get comfortable enough to put the suitcases away completely with probability of her counts dropping.

Bubba Eli is beside himself as he has been invited to “sit in with the boys” on KK104 radio station next week. Not sure that he will be doing much talking but he’s making his “DJ debut” with Jake McBride & Allen Woody on Tuesday morning from 5-9am. Eli is just thrilled they have asked him to sit in and already has his alarm set to get up before the chickens to ride in with Daddy. Eli starts school next week as a big 7th grader. (Now, that thought just gave me a few more gray hairs!!!)

Many have been asking us about Emma Grace’s friend & country music entertainer, Christopher Wayne Morris, scheduled appearance Friday, Aug 13th at the Tontitown Grape Festival. My understanding is this – he should go on right after the coronation of the Grape Festival Queen. So, somewhere between 9-9:30pm. The concert is Free!! Bring a Lawn chair or blanket and come join us. We are certainly looking forward to seeing him & Miss Shelly again. Christopher Wayne is sure to bless your heart with his God-gifted singing & songwriting!

Nanna, Eli, Emma Grace & I made a road trip to Tulsa on Tuesday to see my nephews Jimmy, Joey & Jake. Danielle is gone with her in-laws to Cancun and therefore, Shelbi (Jimmy’s wifeypoo) has Cadence. That would mean she has her four – Hayden, Harrison, Hilton & Hudson plus Cadence for the week. We need to say extra prayers for Shelbi but its like Aunt Judy said, “If anyone can do it, Shelbi can!” So, true, she’s an amazing little lady!! We didn’t get to see Shelbi or the kiddos as Jimmy’s youngest, Hudson, had developed Hand, Foot, Mouth virus and we decided best not to expose Emma Grace. All the kids were HIGHLY disappointed as we all were since we had lots of necks we needed to hug. We are just going to have to save them until next time. We’re saying extra prayers that all the kids don’t get this virus as it is highly contagious. That would be ALL Shelbi needs this week!!

The road trip was quite an emotional day all around. We made the rounds to see my nephews and also, got to visit & decorate my Sis, Dianne’s, grave in Tulsa and also Brother Jerald’s in Collinsville. Sis has been gone two years the 11th and Bub will be gone 5 yrs Sept 14th. There just aren’t days that go by that we still don’t miss Dianne & Jerald. I suppose that is something that never changes but knowing they are in the presence of God is a tremendous comfort. I have envisioned both of them meeting our precious St Jude Angels with open, loving arms and letting them know that they are Emma Grace’s Angel Aunt & Uncle. Dianne & Jerald are both big kids at heart so I can see them laughing, dancing and playing on the streets of Heaven.

Please remember little Ben Bowen who is having a very serious surgery first thing this morning. Little Ben is a brain tumor patient, ATRT, and has been having problems with tumor bleeds. The doctors feel it is necessary to try to remove the tumor completely and not let this go on any longer. Also, please remember mom Jennifer, dad Tom & his brother, Eli for their comfort, strength and peace. We know God is holding Little Ben close to His heart and guiding the way for the surgeons to make this surgery successful. www.bens-story.com

We have a very special prayer request for a dear family who was involved in a tragic car accident Monday night while traveling home from Georgia after visiting family. Johnny & Betty Slaughter, from Prairie Grove were killed instantly after colliding with a bob truck in Alabama. Betty’s daughters, Rachelle & Heather were also involved in the accident but were treated and later released at a local hospital in Alabama. Johnny has three children Leslie, Kara & Cody and also is Hilda & Pug Slaughter’s younger son. Please reminder this dear family who are obviously devastated by this sudden tragedy. Graveside Services will be Friday, Aug 13th at 10 am at the Prairie Grove Cemetery. It is heartbreaking for these to be taken so young and yet so suddenly. It once again reminds us that none of us are guaranteed any promises for tomorrow only God’s promise for an eternal home for accepting His Son. Our hearts and prayers go out to this dear family and we thank you for remembering them during this time.

PRAISE!!! STANTON IS OUT OF THE HOSPITAL!!! WHOO WHOO!!! He was able to get out on Tuesday afternoon is doing really well. They still have him on a continuous pump which administers the continued antibiotic as result of the recent positive cultures. His ANC is rising and he is getting a much deserved break prior to starting another round of chemo next week. www.caringbridge.org/la/stanton

Our WMA bible study last night blessed & spoke to my heart and once again reminded me of God’s visible and loving presence. With the difficult week of Angel Hanna’s passing, the sudden passing of Betty & Johnny Slaughter and the emotional revisiting of Dianne & Jerald’s passing – His word confirmed in Philippians 1:20-21. “I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain.” Our humanity tells us that death is obviously heartbreaking and sad as it’s a temporary separation but to die in Christ is the hope we all are promised. No more pain, death, sadness or sickness – and to be home with God for eternity. Paul’s letter of encouragement continues in Chapter 2:1-2 and reminds us to be Christ-like. “If you have any encouragement from being united with Christ, if any comfort from His love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose.” It’s absolutely amazing to me that Paul writes these beautiful letters while he is in the midst of being a prisoner. Now, I just am QUITE certain the jail Paul was in at that time was no where near the “country club prisons” that today’s prisoners are cushioned with. His writings are a true testament of his love for God and desire to share his faith, hope and love with those around him. In summary of our bibles study last night, here’s how it spoke to me. To be “In Christ” is to be saved and it is to be an intimate, personal relationship with God. He loves us so much He demonstrated His unconditional love thru Jesus’ death and God desires our unique personal relationship with Him. The “tenderness & compassion” reminds Christians of their deep care and sympathy for each other. And we know the loving fellowship we encounter on a daily basis is God reminding us that we are not alone, He is always there to encourage, support and love us. Often this is thru His children who He places in our paths that bless our hearts over and over again. We’re all here for a purpose and sometimes it is not always clear exactly what He wants us to do. I’m convinced we are to continue loving and encouraging each other no matter what situations are placed in our journeys. Keeping our eyes on Jesus to lead the way.

Once again I have gotten lengthy but I can never apologize for sharing my heart. You all would fall out in shock if I posted a paragraph or two anyhow. (smile) Please continue to pray for Emma Grace and her dear friends who continue to battle their fight against the beast. Also, please remember our St Jude families and our friends at home who do not have their Angels at home with them any longer. We love you all and thank God continually for blessing our lives with you!! It is such a comfort to know that we can share our burdens with you and you send our requests directly to our Father. Thank you!! May His Sonshine provide you with the warmth, comfort and love that only come from Him.

Only By His Grace,
Emma Grace, Eli, Barney & Trish

Sunday, August 8, 2004 4:17 PM CDT

UPDATE Monday, Aug 9, 2004 10:15am: MISS HANNA GRACED THE DOORS OF HEAVEN EARLY THIS MORNING AND EARNED HER NOW VISIBLE ANGEL WINGS THAT SHE SO QUIETLY CARRIED HERE ON EARTH. PLEASE REMEMBER TAMMY, DAVID AND FAMILY IN YOUR PRAYERS DURING THIS MOST DIFFICULT TIME. I KNOW THEY WOULD APPRECIATE A NOTE THAT SO MANY ARE PRAYING FOR THEM IF YOU WOULD LIKE. WE LOVE YOU AND THANK YOU FOR YOUR CONTINUED PRAYERS!!! ANGEL HANNA'S WEBSITE IS www.caringbridge.org/ms/hanna

Blessed Greetings to All!

Hey Crew ... just a few notes from home-home which continues to be ALL GOOD!! It's really nice to take advantage of a break while we have it. And great to get to see our home-home folks.

Emma Grace is going strong and feeling good!! She spent the night with "her Brandi & Dalton" last night after we had spent the afternoon of watching Dalton & Bubba Eli ride their dirt bikes yesterday. It was such a pretty day - not too hot, a good breeze blowing and just relaxing under a shade tree letting the boys have fun on the track. Emma Grace had to ride her "Hawg", (her powerwheels Harley) to stay in the spirit with the boys. Nah, she wasn't going to be "out done".

We had a very special blessing at church this morning of a curly headed little girl, almost 4 now and better known as Emma Grace, who wanted to sing. She wanted to sing her favorite song, "Amazing Grace" and so Bubba Eli & I joined in for her gift of praises to God. It was quite heartwarming to say the least and there was no doubt that she knew the words and sang them steadily and sweetly along. I know my heart got a huge blessing and I'm sure that God was also thrilled to hear His child singing praises to Him.

We had the chance to visit with "Les-Baby-Les" (Rieff) Fitzgerald and family today before they left to go back to Carls Junction, MO. It is always such a blessing to get to visit even though the times are few and far between. Oh ... the chance to reminisce days past!! We certainly got quite a few laughs in and I wonder why I’m gonna pay for my raising?!?!?!? HAHA!! It's always good to get to hug Boo, Jim & Susan's necks as well!!

I know I am jumping back and forth with today's events but I wanted to save this for last ... (you know how I am! ha). I just want to share with you what an ABOLUTELY WONDERFUL worship service we had with our home church family today. It sure was nice to be back home with them as we have missed the past two Sundays with them. It seemed the whole theme of today's service was PRAISE!! Everything tied together from devotional right on thru to the worship service. God is so worthy of our praise and we tend to not praise Him even in the least of matters. He requires that we give glory where glory is due and that's our job to make known how very good He is to us. Our sermon was from Psalms 139 and it talks about how well God knows us, He made us and He is always with us. (My summary ... the Psalm is much more detailed and enlightening.) The verses that spoke to me most were 23-24, "Search me, O God and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting." There is nothing we can do that God doesn't know about, He knows our hearts, our secrets, our anxieties and anxiousness, He knows our faults and weaknesses and yet what is so incredibly amazing is that He loves us unconditionally, so much so that He provided a way to "the everlasting" thru His Son, Jesus. WOW!

We've often have said that God knows what He's doing by not showing us what's ahead because He knows we just wouldn't be able to handle it. Well, I found a devotional that spoke of this very thing by Charles Swindoll that I want to share with you. "When was the last time you thanked the Lord for not showing you the future? I'm convinced that one of the best things God does for us is to keep us from knowing what will happen beyond today. Just think of all the stuff you didn't have to worry about just because you never knew it was coming your way!" AIN'T THAT THE TRUTH?!?!? AMEN!! AND THANK YOU LORD FOR KEEPING THOSE THINGS TO YOURSELF!!! Mr. Swindoll closes this devotion with Psalms 31:14-15 "I trust in You, O Lord,... My times are in Your hand." Once again, I am reminded to trust because God is leading the way.

Well...I best hush for now, my heart is full and I could certainly go on with God's wonderful gifts of friendships, the teachings we heard thru His word that He made alive and most of all, His incredible, unconditional love. We want you to know that you are always close to our hearts, always in our prayers and we love and thank you for your faithfulness. As always, we thank you for your continued prayers for Emma Grace and her friends who so bravely fight the beast daily. We ask you especially remember Miss Hanna Gibson who had a very rough Friday night but as of last night had improved some. We just pray for His mercy & grace on this precious child and her family. www.caringbridge.org/ms/hanna Also, our little buddy, Stanton, who continues to fight a fever and his counts still being at zero. He is approaching his second week of being hospitalized and we are praying for a break for all the Haynes', especially, Mr. Stanton. www.caringbridge.org/la/stanton

Also, please pray for Keith James, who is the nephew of our friend Patty Avritt in Cleveland, MS. They have found a malignant tumor I believe on his throat (?). Sorry, I will find out for sure and make notes this time. God knows all about this even if my human mind has allowed me to not remember the exact location. Patty & Bill asked they we place her nephew's condition with our prayer warriors. Thank you for your continued love and concern for God's family. We love you!!

Only By His Grace - Emma Grace, Eli, Barney & Trish

Thursday, August 5, 2004 12:29 AM CDT

Hello Everyone!

All is well on the home-home front ... Emma Grace is running, stomping and blazing up a storm. She's dragging out toys that have been out of sight, out of mind for a couple of weeks and getting to catch up with loving on her basset hound, Sam as well as her two mini-horses, Dolly & Little Bit. She is able to walk up from the yard to and pet them thru their pen without fear of being "zapped" by the electric fence which is on the other side. Dolly & Little Bit snicker at her when they hear her out in the yard and she replies to them "Ok ... Here I come to pet you girls!"

Eli & Emma Grace have been playing catch up as he is pretty excited to have her home especially when he was also prepared for us to be gone for awhile. He had a great time at church camp and has been helping Nanna & Poppa at the farm. Please say a prayer for Nanna as she has developed the shingles AGAIN and is quite miserable AGAIN. I can't remember how many times she has had them in the past 6 months but it's been way too many times. It's almost to the point of being at a chronic status and hopefully, they can figure out if she is being exposed to an allergen that is the culprit.

It's strange as the suitcases are still packed (with the exception of dirty laundry ... ha!) as I know that 2-3 wks seems to be home for awhile but I have learned to not plan anything for certain and it wouldn't be the first time that we've loaded the big red truck for Memphis in a rush. So, the necessities are unpacked but the rest can just stay there if nothing more than Momma's security and sanity blanket just in case they need to load & ride.

Emma Grace is feeling pretty good ... when she's playing, she's playing hard but it seems she nestles down on her own when she gets tired which is alittle out of the norm. We assume that her treatment has fatigued her some and she knows her limits. We will be doing labs on Mondays and Thursdays so we will have an idea what, if anything is going on with her counts tomorrow. Dr. Maris & Dr. Santana felt her ANC shouldn't drop until around 4-5 wks so I just think she's alittle tired from travels, hospital stay, etc.

Our little darlins, Christal & Stanton, are still in the hospitals (LeBonheur & St Jude respectively). Miss Christal's latest surgery #14 was completed on Tuesday as they did a shunt revision and moved it to a different location. She is doing well and should get out by tomorrow (?) hopefully. Mr. Stanton is still in The Jude, still running fever from line infection. They are trying to get two consecutive negative cultures and hopefully, he will be released soon as well. We all know how the days in the hospital are long to say the least. Please continue to pray our dear families will soon have a break and be out soon. http://christalinfo.servemp3.com www.caringbridge.org/la/stanton

In being home-home and having a little more time to reflect especially on the past two weeks, we see God's mighty Hand in every step of the way. We praise Him for sheltering our baby girl and making her recent nuclear treatment as easy as possible on her. Obviously, we were anxious in approaching "the unknown" and once again, He placed remarkable professionals in our path that took care of Emma Grace as if she were their own. His mercy and grace never cease to amaze us in every situation we face. I know I have already mentioned this in past entries but you cannot know the relief of having that treatment behind us and thanking God for being so awesome.

Please continue to remember Miss Hanna Gibson and her family who is bravely fighting her battle. We met this precious child and mom, Tammy thru our dear friends, Monica, Mimi Sharyn & Sarah Claire. Miss Hanna's family is facing their days with faith and hope for a miracle for their baby girl. We pray for God's mercy, strength and comfort for them daily. www.caringbridge.org/ms/hanna

Our gratefulness and love for you is immeasurable. We thank God daily for being so gracious in sharing you with our family and friends! Thank you for your continued prayers for Emma Grace and her precious friends. May your days be filled with His Sonshine!

Only By His Grace -
Emma Grace, Eli, Barney & Trish

Monday, August 2, 2004 10:08 PM CDT

Hello Dear Crew!!

Well now, when I said next transmission for update would be from Memphis I surely didn’t intend that it would be a whole TWO DAYS later. Wow, am I slipping or what?!?!? But the most unbelievable part is that I’m actually updating from HOME-HOME!!! YEPPERS…You heard me right…we got a pass to come home-home!!! What a nice blessing God had in store and we had no idea. We were content to be 5 ½ hours from home-home at our Memphis home. It was quite a shock to be coming home as we were geared up to stay in Memphis for awhile. Momma Tina & I had a strange “mommy-melt-down” as we were both happy that we were getting to come home for a break but it still is hard to leave our dear family even if for a while. I told you it was strange, didn’t I? It’s one of those things that’s just hard to explain, only felt by the heart. It was worth every minute of “sneaking back” to NW Arkansas as Emma Grace was bouncing with joy in the big red truck by the time we pulled into Nanna & Poppa’s. She tip-toed into their house and squealed so LOUDLY making her Bubba Eli & Poppa jump with a jolt of surprise when we came around the corner into their living room. We had let Nanna in on the secret while we were enroute and she kept it under wraps from Eli & Poppa. It sure is nice to be back home-home with our family under one roof again.

Dr. Santana said that he had been in contact with Dr. Maris and they both felt that Emma Grace could go home for a couple-three weeks until her counts (ANC) started to drop. Dr. Maris & Dr. Santana both felt she had done very well with her treatment and there should be no reason she couldn’t go home for a break. We are going to be doing lab work twice weekly with our pediatricians Dr. Muriel & Dr. Perez who will be closely monitoring her counts and as always stay in close contact with Dr. Santana. Once her counts start to drop we will have to “high tail” it back to The Jude. The plan is to try to let her ANC recover on its own with the help of the GCSF injection daily. If the bone marrow will try to recover on its own, all the better. Then she will possibly be a candidate for another MIBG treatment. If her bone marrow will not recover within a certain/safe time period, then they will give her the stem cells that she already has banked for rescue. She only has enough to do one rescue. So, we just pray and wait for what’s next. She will be doing scans again in 5-6 weeks to see how well she responded to this treatment.

It was so good to get back to Memphis to see our St Jude family. Mr. Stanton & Emma Grace have yet to get their hugs & kisses in as she couldn’t be that close to him yet and also, Mr. Stanton sprung yet another fever last night so is isolated again. I did get to get my hugs & kisses in and played with him for a while. We colored on the window with the coolest window markers. When Barney took him a trike on Sunday morning Stanton told “the Really Big Bird” (Barney … ha) to leave but “Chrish” (me) could come over to play with him! Ha!! He’s sucha little hoot and a darling to love on. You know, he’s just one of mine. When we left today, Emma Grace & Stanton were blowing kisses thru to window of Stanton’s room and the whole time Emma Grace was negotiating with Nurses Lizzie & Ashley to just let her stand in the door. Good try, but no cigar, Emma Grace. She knows how to work the crowd but it doesn’t always work in her favor. So kisses and fussin’ thru the window would have to do for now. Please continue to pray for him and Momma Tina & Daddy Jeff as this latest fever means yet more time in the St Jude Resort.

Also, I got to see Christal & Chris who are back in “The Bonheur” as Christal calls it. Chris called on Thursday to say they were headed back to LeBonheur as once AGAIN she is leaking fluid. They had just started her radiation Thursday so that is put on hold until they can get this shunt situation under control. On Friday she had surgery to have her shunt externalized with the drain tube coming out of her tummy. Dr. Sanford decided today to redo the whole shunt as the fluid had started a pattern and made a path of escape out of the same site instead of flowing thru the shunt. So they are going to do surgery #14 on Tuesday to move the shunt to a different site completely. Please pray for strength and comfort for Christal and Chris as they once again face another surgery for our precious baby girl. Ok, so she's 6 and she's more like 6 going on 26. What a little lady she is and a hoot like her dear Momma. Christal is such an amazing child, she just takes everything in stride.

We had an added blessing of getting to see a St Jude family that we lived with when we first came to St Jude in November 2002. Kristi Leick and her family from Port Allen, LA were traveling thru on Sunday and we got to spend some time with them. It was sure nice to see them again as it’s been a whole year. Kristi is really doing well and is having her 1 yr scans on Aug 10th. Please pray all is well with her scans.

We got to spend some time with Tori, Allie, Carol & Amy as they were in for scans. Emma Grace couldn’t really spend much time with them as she wasn’t supposed to be close to especially children or pregnant mommies. So they kept a safe distance and blew kisses as well. Carol made sure she got enough sugars from Emma Grace to spread around for everyone. Ha!

Please pray for Miss Hanna Gibson who continues to fight her battle. She is having complications with tumor bleed and will not be able to continue with chemo. This precious family certainly is in need of our prayers.

We want to ask for special prayers for a family of a dear little girl, Alex Scott, who lost her battle to neuroblastoma on August 1st. We never had the privilege of meeting this very special little girl but have often kept up with her thru her remarkable mission of raising money for Pediatric Cancer Research – better known worldwide as “Alex’s Lemonade Stand”. Alex was diagnosed two days before her first birthday with neuroblastoma and battled this beast for 7 ½ years. When she was 4 she wanted to do something to raise money for her sick friends to help in the search for a cure for childhood cancer. So she decided to set up a lemonade stand with a goal of $1M. From the start news spread fast about Alex and her mission and folks came from all over the world to meet this dear child and support her worthy cause. Bless her precious little heart and from what we have heard and have read about her – she is all heart. At the time of her passing she has raised over $700,000. You can visit her website at www.caringbridge.com/page/alexscott or www.alexslemonade.com. While we were in Philly I read her book which was in Dr. Maris’ office about this dear child and her lemonade stand mission. Alex was also a patient of Dr. Maris and certainly leaves a legacy of an 8 yr old angel who continued to fight not only for her sake but for children all over afflicted with cancer. One of God’s true little angels earned her most deserved wings. Alex’s motto that she literally lived by: “When life gives you lemons, you make lemonade.”

Well, just wanted to thank you again for your prayers a blazin’ heaven for Emma Grace and her friends. We know that God our journeys all planned out we just keep holding to His hand to lead the way. He is so good to give us just what we need when we need it most. We thank Him always for blessing us with such caring family and friends. May your days be filled with His Sonshine! We love you!!

Only By His Grace –
Emma Grace, Eli, Barney & Trish

Special Prayers Request:
Hanna Gibson - www.caringbridge.org/ms/hanna
Christal - http://christalinfo.servemp3.com
Stanton - www.caringbridge.org/la/stanton
The Zoie Schexnayder family - www.caringbridge.org/la/zoie
The Children of St. Jude and All our children who are battling childhood cancers and disease.

Saturday, July 31, 2004 2:34 AM CDT

Hello From Philly!! Not for long...We're Memphis Bound(SMILE!)

Well, needless to say, the countdown is nearing for our departure from Philly at 6:56 am EST that is! This is certainly a wonderful place to visit but these country folks are ready to head back home to Central Standard Time! We were able to change our flight to Saturday morn and should be back in Memphis around 8:30. WHOOO WHOOOO!!! We are so grateful for the gifted professionals at CHOP that God has brought us to and hopefully, one day will be able to see them for a casual visit with our baby girl CLEAN of this ole beast! You know … that’s not too big for God.

Emma Grace is doing very well. She was a little sick at her stomach this morning but I should have known to preload her with Ondansetron and Benadryl first thing so you can bet I won’t make that same mistake again in the morning! Once we got the meds on board she cleared right up and was geared for the day. She is SO SO happy to be out of the hospital and the confinements of the bed. It was time for a Road Trip!!

Our day has been quite interesting … we decided that since we are only an hour & half from the Statue of Liberty that it would be a good opportunity to visit. Miss Emma Grace seemed to have her (Ms. Liberty) confused with going to LibertyLand (amusement park in Memphis). Ha! But we finally were able to convince her that it would be fun even without Tina, Kelly & Bailey riding the “big people” rides with her.

Well, as most of you know, my dear sweet hubby drove over the road for 16 years so I lovingly call him “Rand McNally”. So, I was so thankful that HE was under the wheel and navigating because I was WAY out of my territory. Give me a country road and I can get you anywhere!! Ha!! We made our way thru New Jersey over into New York with Staten Island as our entry point. We could see Ole Lady Liberty in the harbor which was quite a sight to see. Emma Grace wasn’t really expecting her to be green I don’t think but none the less, she did see her. (I’d love to share it with you but guess who was out of film during this leg of the trip?!?!?!? DUH!! We’re sightseeing, don’t ya think film would have been a priority?!?!?) Anyway, we rolled on thru to see Manhattan, The Bronx, Queens, Brooklyn, Long Island and NYC skyline. It would be nice one day to actually stop, browse and take in some city sights but we were on a mission to see Lady Liberty. We actually got to cross several bridges that until now I’d only seen in pictures and even crossed the infamous George Washington Bridge crossing the Hudson River. We did make our loop back around – stopped and bought film in Queens – and made our way to Liberty State Park which actually is over her right shoulder. It was majestic to say the least. The day was a little cloudy but the blue skies were peaking through. Emma Grace was glad to get out, run and stroll through this lovely park. The harbor was full of cargo ships; tankers and a MONSTEROUS cruise ship that made the other ships look like toys in the water. And yes … I got bunches of pictures!!

It was just a great way to end our East Coast Excursion. No set schedule, just getting in the car seeing sights that we hadn’t seen before. The huge sigh of relief for us all is that we made the whole round trip without Emma Grace and her “nuclear influence” setting off any security detectors while going over major bridges, toll roads, etc. Emma Grace will one day realize what a special occasion this day was for her. I think after the week she has had and pulled off being such a trooper it was a well deserved treat for her. Barney & I were talking today while we were having “windshield time” that God just got in there, took care of business with our baby girl, protected her little body from complications and sprung her out early at that without incident. You just gotta praise His name for His splendid mercies and grace!! It certainly makes you feel quite small and humbled to know He’s got everything worked out and seeing His mighty Hand in motion.

Well, I guess I should hush for now. Next transmission will be from good ole Memphis! Look out RMH … we’re on the waiting list to move back in!! Canya stand the Kirkman/Reynolds’, the Haynes’ AND the Hampton’s ALL in the same house again?!?!? Ok, you’ve been forewarned!! Hahaha! We are so looking forward to being back at “home” with our St Jude family again. Knowing that before long we will hopefully, get to be back home-home. God’s gotta plan, He’s the Hand … and we’re just the gloves.

Have a blessed weekend! Thank you for blazing heavens with your continued prayers for Emma Grace and her friends. Please remember Miss Christal who had yes, ANOTHER surgery today as her site was leaking again. I know this has to be tough on Christal as well as Chris who is trying to hold it all together right now. Also, Mr. Stanton is back in the hospital with fever from his chemo. Emma Grace is still being limited to contact with especially children and pregnant mommies until day #7 so we’re keeping a safe distance with folks until next Tuesday. These two families I was really worried about as it was going to be extremely difficult to keep her and Stanton from huggin & kissin but now they will have to be separate for a bit. We love you all bunches and pray for God’s blessings to surround you always!

Only By His Grace –
Emma Grace, Barney & Trish

PS…Oh yeah, say a prayer that we won’t set off any sensitive security in the airport tomorrow. I’ve got the discharge / procedure paperwork in my purse handy just in case. I would hate for you all to see us on the evening news causing a major airport alarm!! Hey Memphis – if you see a slight glow out your east window in the morning, relax it’s just Emma Grace headed home! (Just kidding … it’s WAY late now and I think I need to quit becuz I’m getting plumb goofy!! "Ok already ... I'm happy, I'm happy!! Is thata crime?!?!" Picked up that lingo in Queens today!! HAHAHA Love ya’ll!!!)

Thursday, July 29, 2004 8:55 PM CDT

How do I say this except to just be blunt? WE’RE OUT!!!! WE’RE OUT!!!! WE’RE OUT!!!! I’m not quite sure how many exclamation points are needed to convey our sheer excitement and joy to be out!!! God certainly brought our baby girl thru with flying colors! And she is feeling great!!! I’m quite sure being cut loose after being so confined has her energy level in overdrive right now.
(I bet some of the power plants around could utilize some of her energy!!! HAHA!)

Emma Grace’s reading – which is reading her gamma ray (spell?) levels – was down to 8.1 this morning. Dr. Allen came back into check her again around 12:30pm and she was down to 6.3!!!! That gave us the GREEN LIGHT FOR GO!!!! Dr. Maris got us worked into a MIBG scan today instead of tomorrow to make sure that she had good “uptake” of the meds. He said this in one MIBG that you want to see light up and it did. He said he was very pleased with the way she handled her treatment. So we are headed to Memphis on Saturday morning!!

Everyone has been so very good to us here and no offense, but we are just ready to get back home. God certainly has gifted some very special people to do marvelous work here and we are so thankful He brought us to the best! Thank you C.H.O.P. Team for being dedicated to your mission for the sake of our children and for being a part of our journey with Emma Grace!!

Well, needless to say, it’s been quite an exciting day and Emma Grace has been running LAPS around this room tonite so I’m going to make this short and sweet. I know there’s more that I should be telling you all right now but my mind’s sapped tonight – but in a good way!! Thank you all so much for your power prayers for our baby girl. We are surely strengthened by them and it is only by God’s grace that Emma Grace has completed this phase of the journey so remarkably well. He is SO good and we are Praising Him for His mercy. You know, we have all been told He never gives us more than we can bear. We love you and thank you for walking this road with us. You can never know what treasures you are to our hearts!

Look Out St. Jude – We’re Comin’ Home!!!

Only By His Grace –
Emma Grace, Barney & Trish

Wednesday, July 28, 2004 11:14 AM CDT

Good Day to All from Good Ole Philly!

Just wanted to let you know that Emma Grace is doing pretty well with her new treatment she received yesterday. Her infusion took about 1 ½ hrs and now the rest is just waiting until her radioactivity level returns to 7 or below. Yesterday after infusion she was at 48 … now I don’t even begin to know what the 48 stands for except it’s a bunch – as us “Arkie” folks would say! Today, her level has already been read and it has dropped to 21 which they said she would decrease by ½ the first 24 hrs then it would taper off to our “safe” level. All the folks at Children’s Hospital in Philly are wonderful. They have prepared us as best as possible for all the safeguards, things to look for and what to expect. The facility is also really nice and seem to be top notch. You know, we want nothing less for our little darling and we are so thankful for Dr. Santana and St. Jude getting us set up with Dr. Maris and his team which are remarkable. This is their specialty so that’s why we’re here. Oh by the way, Emma Grace didn’t let the introductions wear off with Dr. Maris until she told him that Dr. Santana was “the wild man”!!! Sorry, Dr. Santana, as I’m quite sure you’ll hear Dr. Maris’ version as he said he would get some good “mileage” out of that one! That’s our girl!!!

I have to tell you this is possibly the most unnerving experience we have been thru since this whole cancer thing began. Granted, the doctors and staff have been wonderful and have kept us very informed but when the actual process of injecting our baby girl with what appears to look like water, it is frightening to say the least. Most of us have this conceived anxiety of anything nuclear. Its presence has a high regard of respect and a safe distance is required by everyone. You can’t see it, you can’t feel it, hear it, smell it – nothing but by reading to docimeters you know its there. Now, this is in our baby?!?!?! As Emma Grace would say, “HELLLOOOO??? WHAT’S GOING ON IN THIS PLACE??? HELLLLLLOOOOOOO???” Ok, so that’s the paranoid momma side, my realistic side tells me, our baby girl has been brought to the best for this treatment and it’s going to be ok. Then God has to take my hand, turn me around for my undivided attention and remind me Who is in full control. He’s is holding our baby close to His heart, safe in His arms, kissing her cheeks especially while Momma & Daddy can’t right now. I’m not sure who wants that more right now, her or us. This part really stinks so I have to leave it with God … this will pass and we can make up lots and lots of sugars & holding.

Emma Grace woke this morning alittle before 5 am (that would be 4 home-home time..ha) and she was looking for her paci, of course. I had to give her meds again at 5 which she receives around the clock to protect her thyroid and kidneys. She dozed back off and got up again saying her cheeks hurt. I turned the light on to see she was swollen and resembles a little chipmunk. Dr. Will & Dr. Allen from the radiation safety team had forewarned us this would probably happen as the salivary glands picks up the MIBG meds as well. So they gave her some morphine to keep her comfortable and are still continuing the versed to keep her relaxed and in bed. If you think she had a southern drawl before … you ought to hear her on versed!! She’s also had some nausea this morning but they are on top of it with anti-nausea meds.

Well, please continue to keep our brave little darling in your prayers. Overall, she has been so good and has tried to accept and understand this won’t be for very long. It’s just hard especially when it’s such a change. Please remember our other families who are fighting daily.

Mr. Stanton is back in St. Jude with a fever which was expected from the chemo. Remember Tina, Jeff & Hayden who are back to hospital rotation which is hard on everyone. www.caringbrige.org/la/stanton
Miss Hanna is continuing to have difficulties and this dear family needs special prayers as they have to make tough decisions right now. They have placed Hanna on Hospice earlier this week. www.caringbridge.org/ms/hanna
Miss Christal is coming back to St. Jude tomorrow to start radiation. Oh by the way, Chris left me a message on my cell which was the baby’s heartbeat!!! Thanks Chris for sharing that special moment with us!! http://christalinfo.servemp3.com
Dustan Heaton going to Houston for antibody treatment.
The rest of our St Jude families and the many children around us battling cancer.

We love you all so much and thank you for your continued prayers. The guestbook entries have made our days (and nights) as it seems we are pretty far from home right now. The best part is God is here and we are so thankful for His mercies, grace and most of all, His unconditional love. May He fill your day with a smile in your heart as you certainly brings many smiles to ours!!

Only By His Grace –
Emma Grace, Barney & Trish

As Paul wrote 2 Corinthians 7:4 (NIV) “I have great confidence in you; I take great pride in you. I am greatly encouraged; in all our troubles my joy knows no bounds.”
We are so thankful for the joy God sends to us thru you and are ever thankful that God’s love knows no bounds!! Our love – The Hampton’s

Monday, July 26, 2004 10:49 PM EDT

7/27/04 UPDATE: MIBG INFUSION IS COMPLETE 3:10PM EST!! ALL IS GOING VERY WELL AND OUR LITTLE PRINCESS IS SLEEPING RIGHT THRU!! THANKS SO MUCH FOR YOUR PRAYERS...WE LOVE YOU!!

Well Howdy Do to Everyone!!

I know, I know you must be in pure shock that there is yet ANOTHER update from last Saturday!! Wonders never cease, eh??

We arrived back in Philly safe and sound around 10am today from our “weekend get-a-way” which we’ve renamed “West Virginia Blessings”. More about that in a sec. We did swing by Wheeling, WV on Sunday evening to see another one of our St Jude girls, Chelsea Bleifus and family. We only got to stay a couple of hours but it sure was nice to get to see them again. Miss Chelsea certainly has not forgotten her Barney. She immediately went to him with open arms for him to pick her up for hugs. We went to her grandma’s house which has a pool – that was quite a challenge especially for Chelsea’s dad, Brian. He stuck by Emma Grace like glue making sure she didn’t get in. Not that she didn’t try a few times though. She was putting the “hard close” on Brian with her best negotiations in place saying that she wouldn’t get Fred & Wilma wet if she just lay in the water on the air mattress. YEAH RIGHT!!! He stood firm with her and did consent to letting her get on the ladder to get her feet wet but he was right there watching her every move. She did “slip” (I think accidentally on purpose) trying to get out and Brian had her lifted out of the pool before she hardly got her shorts wet. It was ALL fun to her though! Bless her heart … one of these days those ole lines will be out and she can swim all she wants.

Today was pretty busy … Emma Grace had an appt at her “Philly” Clinic at 1pm (EST – like I’ll ever get used to that before we leave!) to get lab work done, questions answered, consent forms signed and then at 4pm was admitted into her new room. I think it is best to nickname it the MegaRADRoom. We walk into this room which looks like they got really HAPPY with the shrink wrap! Everything, including the phone, floor, light switches, countertops, toilet (now that was a visual you really didn’t need, but it’s true), faucet handles; you name it – covered in PLASTIC! Even the bedrails on her bed have plastic wrap on them. But if you think about it, the precautions have to be in place to protect the radiation from being spread for everyone’s safety. It cracked us up the door handles and faucets have rubber gloves taped to them for protection. There are four lead screens which will encompass her bed after she receives her “glow juice” tomorrow. They are placing her Foley cath first thing (which means she gets the “milky stuff” for anesthesia – she’s so happy!) and then the actual infusion of nuke med would be about 1pm. It takes two hours to run so she should be finished by 3 pm. It makes us a bit more anxious and now very real to see all the “stuff” for preparation, getting all the info of do’s and don’ts, etc. But I know that I know that I know God came here long before we did and took care of the “worry” parts, got things lined out for us and we are trusting Him to handle it … period. We did get some very positive news during our question/answer session as they told us Emma Grace is a very good candidate for this treatment with her cancer primarily being in the bones and bone marrow. They are going to be giving her the maximum dosage and we’re just covering it up in prayer. So, please say an extra prayer for our baby girl tomorrow around noon (home-home time) as she should be getting her meds. Also, Daddy & I are going to take turns being in the room because of the risk of overexposure to us. The nurses rely largely upon to do the everyday tasks to minimize their exposure since they are around this far more than us. There will not be a time that one of us aren’t with her to hopefully, keep her security level in tack as she is going thru this new phase of the journey.

I know I hit on the high spots in Saturday’s update on our weekend journey and I have been sitting here soaking up and basking in the love of God He continues to show us at every turn. It was no mistake or chance that He brought us to West Virginia this past weekend. He had it all worked out because He knew the blessings He had in store. I will make my best attempt to share with you all what a wonderfully heartwarming weekend it has been. I’m not sure who was more excited about the visit us or the Brewer’s but God certainly knew that we all enjoyed getting to spend some much needed time together.

Stephen & Barney took off in the pickup truck Saturday afternoon to check out the scenery, the cows, (which you know that hurt Barney’s feelings to check out the cows … yeah right! Ha!), mainly, just riding the countryside and getting to visit. Emma Grace kept Kayla, Kimberly – Kayla’s friend, and cousin Trey busy playing. She wore poor Dale; McKenzie’s Maltese (spell?) pup plumb out. She’s chase, carried, threw toys at him and her favorite, and gave him his “paci”. Yes, Dale has his own paci, in fact, several of them. That was one of their main bonds but primarily the fact that he was McKenzie’s dog made him extra special to her. She knew. Sonya was making all kinds of goodies in the kitchen, my favorite of which was blackberry dumplins. Made just like chicken n dumplins but minus the chicken PLUS the blackberries. Oh, it was absolutely YUMMY! Sonya is such a wonderful cook – she certainly spoiled us.

As I told you on Saturday they had a cookout planned with family & friends who were looking forward to meeting our little girl they have been praying for so many months. It was so good to get to see folks again that we had met while the Brewer’s were staying at RMH. Of course, Angel was in her pajamas as usual. She wore them to the cookout just to get Barney’s goat as he always gave her a hard time about wearing them day & night. The food was OH SO WONDERFUL but the fellowship surpassed it all. The setting was a pretty as a picture (only it was real! Ha!) … the cookout was under this marvelous, huge old shade tree in Stephen’s Mom & Dad’s yard (Etta Mae & Darrell), lawn chairs scattered with folks visiting, kids playing in the yard and the beautiful hills all around us with the sun setting low. Now, that’s the best description I can give without you actually seeing it for yourself. I know the pictures I took won’t come close to its real beauty and the peaceful spirit that was shared by all. Later, I went into Etta Mae & Darrell’s to find Emma Grace & the kids and found a piano so I started plunking around on it. Before I knew it we were having an old fashion gospel choir around the piano. We ended up singing for quite a while and it was the old Albert E. Brumley, Fanny Crosby hymns. The good ole hymns. It was just wonderful … now trust me, I don’t claim to be good by any means on the piano but we just had fun. The Lord says we are to make a “joyful noise” and that’s what we did. They then told me they didn’t have piano player at church so I was delegated for the position Sunday morning.

Sunday morning came too quickly ‘cause we knew our visit would be coming to a close. After Emma Grace’s bath & dressing change, we gathered up all our duds, loaded the car and headed for church. The small country church house was nestled back in the quiet hills on yet another county road. Now, we already had our cup full from His sweet spirit the day before but let me tell you, He filled us up and run us over with His blessings in worship service that morning!!! God made His presence known and we worshipped and praised Him for being so very good to us all. God knew we needed to fellowship and worship with folks, some we had only just met. But in God’s house no one is strangers, we’re all family – His family. It is an experience I will forever keep close to my heart.

Barney & I were talking on the way back to Philly how everywhere we turned we could see McKenzie. Not just with the many beautiful pictures of our precious girl but in her walk with Jesus that continues with her memory. She truly cared about those many folks that were around her. She loves her Jesus and wasn’t afraid to tell folks. Her main concern was that they also know Jesus and even though her time here was short she is still leading folks to Christ even since she has gone Home. She walked in example of His love and didn’t care who knew it. Wow! What a testimony she has and an inspiration to us all!!

Well, I guess I better close for tonite…Mr. Jeff will be shocked that there is ANOTHER entry so you all better check on him to see if he’s ok! Ha! (I never promised this one would be short though.) Please remember Bubba Eli as he is staying with Nanna & Poppa while we are gone. He left for church camp this morning so I know that will be a fun week for him. He’s our little man who has to give up so much for his Sissy. And he graciously does what he has to quite often for her sake. We love you, Eli!! Thank you all so much for your ongoing prayers for Emma Grace and her sweet friends who continue to fight the raging battle. They are truly mighty strong little people as God leads their way, carrying them through. We love you all and we thank God daily for blessing us with you!

Only By His Grace,
Emma Grace, Eli, Barney & Trish

“May the Lord make our love grow and overflow to each other and to everyone else.”
I Thessalonians 3:12

Saturday, July 24, 2004 1:41 PM CDT

Helllllloooooo CREWWWWWW!!!!

Well, first of all, I don't want you all to fall out #1 because I'm actually updating TWICE in the same week and #2 this really is going to be pretty brief (ok, in comparison to most of my lengthy journal entries it will be BRIEF!). I can hear you all saying "yeah right!! This is TRISH we're talking about and she seldom finds time to catch a breath in between sentences!" HAHAHA!!

The trip to Memphis on Wednesday went very well. Emma Grace was pretty wound up which kept us "alert" most of the way. I had burnt the midnite oil to get our gear packed & ready to go so I tried to snooze while she snoozed. We were SO SO HAPPY to get to HUG THE HAYNES' NECKS!! Stanton & Emma Grace go to catch up on some hugs & kisses (of course!). Our travel day Thursday became quite hectic as Dr. Santana wanted to xray her right arm since it has started to bother her again. Plus he ran some labs. We gathered our scans and reports to hand carry to Dr. Maris. Thanks Miss Judy for all your wonderful, caring help. You made this trip alot less crazy for us!! Also, thank you Mr. Jeff for taking time to run us to the airport which gave us alittle more time to get our stuff done. And thanks Tina & Stanton for letting us borrow Daddy Jeff for an hour or so. Needless to say, by the time we were getting on the plane I was NUTZ!! But I finally took a deep breath and decided whatever I forgot to bring will just have to stay home. So at last, The Hampton's aka The Clampitt's were headed for the Big City. Our flight to Philly was great and Emma Grace was thrilled to have Daddy flying with us for a change. She acted as if he had never flown before and was filling him in on all the ins & outs. We made it to the RMH finally by 7:52 (EST) and was blazing there as 8 pm is the latest you can check in. God just had everything worked out fine so why was I sweating the small stuff?!?!?

Our appointment with Dr. Maris, Mrs. Pat, Dr. Sivert, and the other nurses went very well. They briefly prepared us for what is going on next week, how this treatment is intended to work and what their expectations are with Emma Grace. I will summarize because first, I can't remember verbatim very well and secondly, I'm attempting to keep this "brief". Basically, we are meeting with the Anesthesiology Team and Pain Mgmt Team on Monday as they will have to put her to sleep to do the Foley cath and also, the Pain Team is going to work with us on probably sedating her to some extent as she HAS to stay in bed for 3 days. (That could certainly be a serious challenge without MEDS!) Then she will be admitted on Monday and the treatment is on Tuesday. The amount of nuclear medicine that Emma Grace will receive is 1000 times more than what our kids receive for their MIBG scans. For some reason, we had understood it to be 100 x more. (ok...I left out a zero). Needless to say, our little one would be able to have enough energy for a small town. I'm sure that's my exaggeration but it just seems hard to imagine that God has blessed these wonderful doctors to have the intelligence to find out what is working and they are in the process of hopefully, perfecting it to be an effective treatment of neuroblastoma. Our goal and pray is the MIBG will attack the neuroblastoma cells and wipe them out!!! We may only think this nuclear med is big...Our God is WAY BIGGER!!!

Well, God worked it out that we were able to come visit Sonya, Stephen & Kayla Brewer and families in West Virginia. And for those of you who know the Brewer's know they said they live in the hills of WV...well, they are right and it's absolutely GORGEOUS here!! OH ... and by the way, the frogs really do "chirp" here!! We made it about midnite Friday and to our surprise they have planned a cookout Saturday with family & friends invited to meet the Country folks from Ark. I know I have said it many, many times before BUT (you know I'm gonna say it again), God is so wonderful to send us dear families right when we need them and the Brewer's are certainly a very special family to us. They are spoiling us and need I say how spoiled Emma Grace is getting!!! Barney & I had the intimate opportunity to visit our Angel McKenzie and I wish I could tell you what a breathtaking resting place she has. This place has a peace about it that is quite difficult to put into words. It's just a comforting peace. I know God meant for us to feel His presence here as He is the One who shared the Brewer's with us to begin with. I was afraid that I would have to do some heavy duty explaining to Emma Grace as she is well aware that McKenzie is now in heaven. But she never questioned a thing when she saw McKenzie's earthly resting place. She just knew it was alright.

Updates on Our Kids:
Stanton is out of the hospital with round #1 of ICE behind him. He is doing pretty good, going strong. (Imagine that!) www.caringbridge.org/la/stanton
Christal is out of LeBonheur and HOME in FLORIDA!! as of last night. She is doing well after her recent shunt revision. Yes, #13 surgery for our girl!! She should return on Thurs next week to get ready for radiation rounds. http://christalinfo.servemp3.com
Dustan Heaton is headed for Houston on Sunday. He is still fighting a tough battle and having a hard time.
Karina Hurtado ... Clear scans!!
The Schexnayder Family as the days of adjustment are difficult to say the least.
The Rest of our St Jude families who are forever a part of our family.

Well...gonna hush for now. Ok..so it wasn't as short as you thought it was going to be. Please know that we love you all more than you can ever know and it means the world to know you care so much to walk hand in hand in this journey with us. Thank you for your continued prayers for Emma Grace and her St Jude friends. God is so very good to send us you and we thank Him for you always!! We'll update from Philly to let you know what's going on with our girl. May God Bless!!

Only By His Grace,
Emma Grace, Eli, Barney & Trish

Monday, July 19, 2004 7:21 AM CDT

Well Howdy Do to All!

In effort of trying to get my weekly update complete before Mr. Jeff hollers "GET R DONE!", I have tried to sort thru my mind of what to share. It's been quite a roller coaster this week - super highs & heartbreaking lows and a week of emotions that I've struggled to sort through. It's been over a week since last update so please be patient and bear with me. Pull up a chair and sit a spell ... you know me, there's lots to share.

Emma Grace is doing just marvelous ... quite the little picture of health and you would not know by looking at her that she’s still in the battle. It never ceases to amaze me she's a little spit fire, full of energy, playing til she just falls out in exhaustion and such a little fighter. Oh, for half her energy!! I'd just be happy with enough to keep up with her! ha! Her determination and strength are obviously straight from God. She’s been in this fight for nearly half of her precious little life now and takes everything in stride to just continue her battle. It’s her way of life that she is so gracefully accepted just as so many of her St. Jude siblings which have so blessed our lives. It seems unthinkable for us as adults not to mention for our curly headed little girl who will soon be 4 in September.

Trip to Philly is getting near ... we leave for Memphis on July 21st to spend the night pick up scans to hand carry to Dr. Maris in Philly and fly out on July 22nd. Our anxieties are growing therefore, we keep holding tighter to God's unchanging hand. We’re so glad His hand is so strong and calm, ours seem a bit "white knuckled and sweaty" as the days get closer to Emma Grace's new chapter of "Battling the Beast". We just continue to keep her covered in prayer. Who is it always saying, “He’s got this all worked out … we just have to hang on and trust Him”? Sounds very familiar, eh? It’s certainly worth reiteration primarily for my sake. He faithfully keeps reminding me.

We are looking forward to getting to visit our Angel McKenzie’s family – Sonya, Stephen & Kayla Brewer. It has been quite awhile since we have seen them and are sure ready to fellowship with the Brewer Crew. Hopefully, when we are finished with our initial visit with Dr. Maris on Friday, July 23rd, we will be able to go hug this dear family’s neck. We don’t have to be back to C.H.O.P. (Children's Hospital of Philadelphia) until Monday morning so if all goes as planned, we are looking forward to getting to worship with them on Sunday.

Christal's biopsy hence surgery for another tumor resection was completed last Monday. This is #11 for our dear darling. They did find another, yes another tumor and it was God’s merciful hand that showed it being another tumor. You’ll recall they put off the biopsy from the week prior due to not having small enough equipment for her. By doing so meant they actually had to go back in to do an “open” biopsy and that’s when they found it was sure enough tumor. They were able to remove all of it, Praise God. She is doing really well, getting to go home to Florida on Wed, July 21st for a brief stay and returning to start radiation on July 26th. They’ll be at our home-away-from-home when we get back to Memphis from Philly. Christal and Mom Chris slipped away last weekend to spend with “the country folks” in Arkansas. Christal was so excited as she was going to see our horses. They were all good and all except Christal said “they stink”. Well, she’s right; they are a little smelly especially if you’re a “city slicker”. HA! We were so thankful to share them with our family & extended Maxwell family for Fish Fry @ Aunt Judy's plus an added blessing of getting to worship with them and introduce our church family. They welcomed our precious Christal with open, loving arms and were thankful to meet the little darling they have been praying for over the past year. You can check on our Christal at http://christalinfo.servemp3.com.

God is giving my St Jude Sister/Mom, Tina such a heart to heart experience to share with all us… no one gets to pick their journeys much less their trials and some tasks seem unbearable. But God has placed very special people to perform those very fragile tasks and God’s grace is sufficient for whatever He places in our path. He longs for our full attention, listening close to His will in our lives. Tina & Jeff listen to Him intently, pick up “the stick” and run the unbelievable task at hand. They recently stood by our dear St Jude family’s side, Travis & Chastity while they had to walk thru a door no parent ever should have to stand in the threshold. Letting our Angel Zoie go home is indescribable on her dear parents as well as her adopted St. Jude family. Jeff & Tina let me say as many have already and as I have told you before, you carry God’s light in such a beautiful way and you continue to share His love with everyone you meet. We thank God for sending such caring, loving soldiers to fight in this battle – no matter what is standing in the way.

Again, Jeff & Tina are amazing as they too continue to fight in Stanton’s battle with the beast. The recent scans & tests showed “stable” and they are switching horses, so to speak, with his new chemo starting Monday, July 19th. These treatments are known as ICE, and forgive me, but I forget the different chemos. I know one is etopiside and I think the other is carboplatin. You’d think as much as Tina and I visit I would be able to recall those chemos better … I’m slippin, sorry. The main thing is our Stanton is facing another regimen of chemos and we pray that he will be as comfortable as possible as they tackle the beast head on. He’s an amazing little fella that has that “gung ho” spirit and fights so bravely. If you haven’t had the blessing of reading Tina’s journal, (she’s so faithful to journal daily and we get such encouragement in reading her inspirations from God.), well, now would be a good time to start. She does a wonderful job in sharing what God is leading them through. Mr. Stanton’s website is: www.caringbridge.org/la/stanton

We have some very special thank you’s to deliver. First, I want to say reiterate that God’s grace is sufficient and He promises to supply all our needs. That said, with the upcoming treatment(s) with our Emma Grace means more time away from our so-called normal life and away from work. (Note: the only thing that is truly “normal” is the setting on the dryer – smile.) God has certainly blessed us with some very special people and new friendships this week as well as reminded us what incredibly caring friends and family we have. It is unbelievably humbling and heartwarming to know so many folks are willing to share their love, prayers and support for our family. “Thank You” seems VERY inadequate for the compassion you show to us. If only you could look inside our hearts, you could see the meaning of the words that just don’t seem to come for how we feel about you.

The benefit concert with Christopher Wayne Morris on Tuesday night was absolutely incredible! I know I won’t be able to relay this inspirational experience to its full justification but let me just say, it was AWESOME! It was such an honor that he took time out of his busy schedule to share his time and music with such compassion for our Emma Grace. His music is a gift from God that he delivers straight from his heart. Everyone had a grand time and was so blessed by Christopher Wayne’s heartwarming performance that gave us a glimpse of his enormous heart. He dedicated a very touching song called “I’ll Walk You Through This” directly to Emma Grace. It specifically talks of “the past is the back of your mind I know, when you take a leap of faith, you don’t know what the future holds, look deep inside My heart, I’ve got nothing to hide. Listen to that quiet, still voice that says ‘lay your fears aside’… I’ll walk you thru this, one step at a time, take My Hand and you’ll be fine. It won’t be easy, if you feel like you’re slippin’, take My Hand, here it is. I’ll walk you thru this. You won’t fall if you keep on lookin’ up, you can always count on My love, it’s a love you can trust” Well, now, do you think Daddy or I had a dry eye? Nor did many others. We’re in the mode of this new chapter with Emma Grace’s treatment praying we have made the right decisions for her. No doubt, God sent Christopher Wayne when we needed him the most especially to deliver His message thru this song. God reminded us that He is there – NO MATTER WHAT! Leading the Way, we just have to follow Him. We had the added blessing of meeting a fellow Christian and friend in Christopher Wayne & Ms. Shelly. We pray for God’s blessings on their travels and touching lives with God’s love as they did ours. Thank you Jake, Haystack, Denise, Tonya and so many more who made this such a special gathering for us all!! If you would like to keep up with Christopher Wayne his website is: www.christopherwaynemorris.com.

We also had an extra blessing of meeting a dear family, Jun & Connie Estorninos, from Fayetteville. The Estorninos’s daughter, Mykka, lost her battle with osteosarcoma in January 2003. In memory of their beautiful 15 yr old daughter, a combined effort of many established the Mykka Estorninos Foundation to assist families who have children with cancer and also, young adults with cancer. They are originally from the Philippines which is so neat because I have a dear aunt, Trining, who is also from the Philippines. We had a wonderful visit with Jun, Connie, Rusty & Ed and thank God for placing this dear family & friend in our life. Their love, support and prayers for our Emma Grace are overwhelming and we cannot thank them enough for blessing our heart as they have. Another fine example of God’s mercy and grace in what can seem to be the most trying of times.

There have just been numerous acts of kindness and compassion that I know if I try to start itemizing will surely leave someone out. Just know that we love you more than you can ever know. Again, it is quite humbling to have such an outpour of love shown to our family in so many ways. We thank God for you always and ask that He blesses you for being such wonderful friends and family.

Our Angel Zoie always wanted to be a ballerina and we all envision that she is now dancing with the most beautiful ballerina slippers that Heaven has in store with music that we can yet imagine such perfection and harmony. She told her MawMaw Monkey she knew she'd never grow up to be a ballerina. Such wisdom these children have and even in the midst of Going Home. God gives us glimpses into the windows of Heaven from time to time but we feel He gives these babies a clear picture of His heart on a daily basis. We can see it in their eyes, their ways, their smiles and most of all their love. It's truly God shining thru. They seem to see everything in a much more brilliant and beautiful light. Things are pure and simple, no gray areas to wonder about – it’s all black and white – no in between. But with a twist only God can add, they see vividly in full color.

Emma Grace had a gift delivered at Nana & Poppa’s waiting for her last week from a dear Christian who we have never had the opportunity to meet but keep up with Emma Grace and her friends regularly and always are lifting our kids in prayer. The picture was a beautiful water color painting of pink roses in a bud vase with gorgeous hues of purples, blues and greens in the back ground. The perfect touch was a pair of pink ballerina slippers at the base of the vase. Now, do you think Mr. Milmon could have known about our Angel Zoie’s dream of being a ballerina?? Nor could he have known that she would be earning her wings that very weekend?? No to all. As Mimi Sharyn says, Is it odd or is it God? Well, we certainly know the answer. God knew we would get great comfort in the beautiful gift and it is a reminder that our Angel Zoie is dancing, singing and praising God in His very presence. Thank you Mr. Milmon for your gift that touched our hearts more than you’ll ever know.

Most of you may already know about Angel Zoie and Her Angels. For those who have not heard of this, first, I apologize for never mentioning it as it has been such a blessing for many. We recall visiting with Travis and Chastity many times about Zoie’s angels as far back as we can recall when we first met them in Feb 2003. Her two angels would visit Zoie often, talk with her and she would converse with them as well. Not everyone has ever seen their angels, much less had numerous conversations with them. But then again, not everyone is our Zoie. God blessed her with an understanding that we can only imagine. As the days got closer to her Homecoming, she had two very special visits that you need to know about. On Thursday morning she woke and told her family and many others that she had a visit from Mary & Jesus in the night. Jesus was asking her to Come with Him and she politely told Him that she couldn’t right then because she couldn’t leave her Momma & Daddy just yet. The next night her two angels came back and asked her again to Come Home to live with Jesus whom she had met the night before. Zoie told them that she’d go if they would let her stay until her Uncle Chad came in which was to be late that Friday night or early Saturday morning. Our Zoie kept her word to them as her Uncle Chad arrived in Memphis wee hours Saturday morn, came to see Zoie in her room at the Ronald McDonald House around 10:20 am and Zoie closed her eyes here on earth to awake in the arms of Jesus at 11:10 am. What a testimony our precious Zoie has! God gave her a peace like no other peace we can know until we see His face. I’ve often heard about folks seeing angels time and again, especially when time in near and know of times that you just know the presence of God is in a place but Zoie actually saw Jesus. Best of all she got to tell folks about Him! God is truly awesome in His perfect ways, perfect peace and perfect love. I know that Travis & Chastity also have God’s comfort and peace in knowing He gave their baby girl a very inspiring though short life to so many. Zoie’s website is: www.caringbridge.org/la/zoie

Emma Grace’s interpretation of Angel Zoie being with Jesus ... remember this is the child that told me “It’ll be ok, Momma, Jesus will take care of Zoie.” While taking her bath last Wednesday she asks me out of the blue, “Momma, who came to get Zoie to take her to Heaven…Jesus or the angels?” I replied to her that “I like to think Jesus came and carried her to Heaven in His arms”. Of course, her wheels are still turning with honest questions. “So, how did He get here?” (Good question, Emma Grace. Now, how do I answer this one?). “Well, I guess He flew here.” In her infinite 3 ½ yr old wisdom, she sums the whole conversation up, “Yep, He just flew down here and got Zoie and flew back to Heaven in the sky. He can fly, ya know, ‘cause He’s Jesus.” Thank you Lord for the peace and understanding you give our precious babies when we don’t begin to know how to answer their questions!

Well…in the 3 days it has taken me to complete this one journal entry, I’ve only heard from 2 folks on WHEN I was going to update. Of course, one of them HAD to be Mr. Jeff!! HAHA! I knew he wouldn’t let me down. He did say that if I would learn to journal more often that I wouldn’t end up writing a whole book. Ok, ok … justifiably corrected and lovingly criticized to "GET R DONE!". So their future efforts are to “train” me to journal on a regular basis when we live back together at Uncle Ronald’s house in August. (We’ll see, won’t we? Ha!)

We love you all so much and thank you for your continued prayers for Emma Grace and her many friends who continue to be the bravest, strongest children we have ever met. May God fill your basket full of His marvelous blessings and know that our lives are so blessed to have treasures like you!

Our hearts overflow with love for you!
Only By His Grace,
Emma Grace, Eli, Barney & Trish_

“I thank God always for you because of His grace given you in Christ Jesus.” I Corn 1:4

Thursday, July 10, 2004 11:30 AM CDT

OUR DEAR ZOIE, WHO WAS TRULY AN ANGEL HERE ON EARTH, HAS HER MUCH DESERVED ANGEL WINGS AND GONE HOME TO BE WITH JESUS ABOUT 11:10 AM TODAY. OUR HEARTS ARE BROKEN AND HEAVEN IS REJOICING AS WE SPEAK. PLEASE LIFT THIS DEAR FAMILY IN PRAYER FOR HIS COMFORT & PEACE TO COVER THEM. WE LOVE YOU!

LUKE 20:36 SAYS IT BEST FOR ANGEL ZOIE TODAY, "YOU ARE ETERNAL, LIKE AN ANGEL."

Blessed Day Dear Friends & Family,

Thoughts of where to start seem to come slow this morning so I'll start with Emma Grace as she is doing well. She is in HIGH gear and awaiting our time to leave for "Philwadelphia" as she calls it. She has to be off all medications 3 wks prior to the nuclear injection and even will not be doing any lab work until we get to Philly. So we are just enjoying time at home, had a wonderful 4th of July and anxious for the upcoming trip. Please pray with the lack of chemo for this period of time will not allow the beast to get a new wind about it.

Our dear sweet Zoie and her family certainly are in need of our prayers and even notes of encouragement to her website as you feel lead. www.caringbridge.org/la/zoie. Dr. Santana, (who is also Emma Grace's dr), met with Travis & Chastity yesterday without little Zoie present. In summary, there isn't anymore than can do for her other than comfort measures. Many of you read Zoie & Stanton's website and know this was feared but now confirmed yesterday. Dr. Santana felt that she may have about 2 wks. Zoie doesn't want to go home so they are staying at their other home, the Ronald McDonald House, and have arrangements made with the hospital as to the wishes of the family. I believe Hospice is going to be involved to offer their support and care during these very difficult days.

First and foremost, our hearts are so badly broken for the Schexnayder Family who have become a very dear part of our family and we love beyond words. It is so hard to try to express the forever and unbreakable bond we have built during our journey through St Jude. Some would kindly argue with me, or Tina or any of the others who feel this way, when I say that Zoie is just like one of our own. No, we weren't given the gift of dear Zoie being born into our individual homes but God allowed us as He has so many to share in her precious, heart touching life which has made us feel a unique closeness as to her being "one of ours". This precious family needs all the support, love and encouragement we can give them.

This has been difficult and very sobering for us for many reasons. It is really hard being home-home feeling like we need to be in Memphis helping out as it seems we have always been able to be there for them in the past. We feel like our hands are tied helplessly so we just continue to encourage and pray for them endlessly. God's blanket of love provides the ULTIMATE of comfort and strength. We are so thankful that Tina & Jeff have been able to be with them, helping with Zoie when they can offering love, comfort and support as they are strong holds for Travis & Chastity during this time. Here's an example of this indescribable bond we keep talking of - Mr. Stanton is doing his treatment now and should The Haynes' have the opportunity for a break to go home-home, Tina & Jeff have not thought twice of leaving so they can stay in Memphis to help Travis & Chastity however they need them. God certainly had it all planned for His light to shine by having the Haynes' there especially when they were needed most. And by the way, Jeff & Tina, you two are absolutely incredible. God's love shines so brightly through you and we thank Him for sharing you with us. "You have a crown that will last forever." I Corinthians 9:25. I'm sure that Travis & Chastity feel His love thru you especially now.

Tina & I have discussed several times that not only is Zoie loved as one of "ours" but also she has the same beast as our Stanton & Emma Grace. Neuroblastoma is very aggressive, nasty cancer and it hits close to home knowing despite all the heroic efforts of the best medicine currently available for Miss Zoie and the rest of our children - it's just not working for her. Every child is different, I know. Some children are going to respond to the treatments and quite sadly, some will not. The doctors and whole team at St Jude are incredible as they have always treated our babies as their own so this is obviously very troubling and upsetting for them as well. They take this to heart just as we do. So therefore their fight increases in the battle for us and for so many more. We continue to pray for God's guidance, mercy and grace in the ongoing studies to put this beast as well as the other cancers and life threatening diseases out of everyone's misery.

There are just so many emotions we are all struggling with during this time and it's through painful tears I am trying to finish this update, so please bear with me. We know that God does not make mistakes so praying for God's will is quite often a very difficult prayer for any parent, especially when we know that our ways are not always God's ways. We would wish for all the children to survive and live happily ever after... period. But that isn't always the case and I think God can take of all our children far better than we can therefore sometimes has to take some of our very sick children home. And what a marvelous heavenly home He has prepared, no more sickness or pain. Do I understand that heartbreaking reality??? No, certainly not. But do I doubt Him?? No, absolutely not. We are God's children and how can we imagine this cancer is easy for God either. He created us and hurts when we hurt. So, our prayer is that God's mercy endures for our Zoie and His love, comfort and strength surround Chastity, Travis, Jane, Calvin and the rest of Zoie's family at this time as well as her extended St Jude family.

For our dear Zoie, you are such a brave, beautiful, sweet, little girl who has touched the lives of so, so many people. You bring joy and smiles to all who know you. You are certainly one of God's special little girls. How blessed we are to have had the opportunity to call you our own. May His peace come to you in a mighty way. "He gathers the lambs in His arms and carries them close to His heart." Isaiah 40:11

We love you all more than you can know and we cannot thank you enough for your love and prayers for not only our Emma Grace but for her special St Jude siblings who you are so graciously and willingly lifting to our Father. We appreciate your being there to allow us to share our hearts through triumphs and sorrow. May God bless your day in the wonderful ways that only He can!

In His Love,
Emma Grace, Eli, Barney & Emma Grace

Special Prayer Request:
Zoie www.caringbridge.org/la/zoie
Christal Reynolds - having a biopsy of suspicious area then will determine what's next - surgery or radiation http://christalinfo.servemp3.com
Hanna Gibson - brain tumor, 3 yr old precious girl who has shown tumor growth with her last MRI after her relapse in March. She is starting a new chemo to hopefully stop this growth. www.caringbridge.org/ms/hanna
Stanton and Family - continuing treatment and for Jeff and Tina's enduring strength and peace to help Zoie and family. www.caringbridge.org/la/stanton
The Rest of Our St Jude Families

Friday, July 2, 2004 3:14 PM CDT

Dear Friends & Family,

Our travels to St Jude this week were busy to say the least as well as bittersweet. Emma Grace's tests went very well. All tests showed to be stable and her CT scan actually showed improvement which we are so thankful God continues to hold our baby close and touching her body. Everything is still on schedule for leaving for Philadelphia on July 22, MIBG treatment July 27 and hopefully, returning to St Jude on Aug 1st. Emma Grace and I will remain in Memphis for approx a month (?) and look forward to living back at the RMH with our friends.

I can't get much farther in this entry without sharing the heartbreak we all are feeling for our dear friend, Zoie and her family. The doctors told Mom Chastity and Daddy Travis this morning that there isn't much more they can do for our Zoie other than comfort measures. The CT that was completed yesterday revealed the tumors on her liver are causing it to grow at such a rapid pace that it is taking up nearly all her abdomen. They said anything they do at this point still falls on the end result ... they are losing the battle with the beast for our Zoie. Please pray for God's mercy on Zoie and strength for Chastity and Travis who are having to make decisions no parent should ever have to face. God knows best and we know that ... it just doesn't make any of this easier for anyone especially, for Zoie's family. God loves covers all and we just pray for His loving arms to wrap them closely to carry them through. Miss Zoie's website is: www.caringbridge.org/la/zoie if you would like to drop them a line of encouragement. Chastity told me this morning they need our prayers and I assured her we have that base covered for them.

We were blessed to spend time with Stanton, Tina & Jeff who continue to be a beacon shining God's light. God certainly in using them in a huge way at St Jude as well as the RMH. It's amazing that thru such trying times He has His own plan to use His children to encourage, support and love others and the Haynes' are surely a blessing to all they meet. We love you, Haynes' more than you can know! They are also especially close to Zoie and family and need our prayers to give them the strength and encouragement to help the Schexnayder's as God needs them to. It is so hard to know what to do or say but God has placed them to be with Zoie & family for a reason to let His light shine no matter what. We are all fighting the battle on a daily basis and it is just heartwrenching to be in the fight and stay strong for other families as well. God is certainly able to carry us through ... so we have to keep looking up and holding to His hand. Please pray for Stanton as he is starting radiation along with the existing chemo treatment on Tuesday. He developed some bruising and additional swelling which prompted his doctor to be aggressive with the radiation therapy being moved up and getting underway. His eye is looking much better once the irinotecan started back this week.

We also got to spend time with Bailey & Kelly King, Carol, Tori, Allie & Amy who were here for more treatment. It was so good to get to hug necks and spend time with "our families" who we haven't got to see in awhile. Please pray for Kelly as she is going in for an MRI and needle biopsy on Monday. You will recall they found a recurrence of breast cancer recently and now feel there is a spot on her lung which needs addressed. Please pray this test is negative and they can get a gameplan together for her treatment. Her boat is already loaded with her daughter, Bailey's treatment.

Also, I received a call from Chris, Christal's mom while I'm updating. There is evidentally another area they have been watching since April other than where they removed the tumor they are concerned about. Dr. Kun actually called them today while they are at Louisville at the singing competition this week. They will not start radiation this Tuesday as planned. She will have a PET scan done and probably a biopsy of this area then decide from there. Please continue to lift them up in prayer as this not what they were expecting considering she just had major tumor resection. We just pray this is not tumor and they can continue with the radiation therapy on our little Christal.

I've sat down to update at least 3 different times this morning as we know everyone is anxious to hear about our week at St Jude. It just is so difficult sometimes to compose "the right things to say" when your heart is literally breaking for your dear friends who facing the unthinkable with their babies. Emma Grace gave me the inspirational thought for today when I shared with her that our Zoie is not doing so well. In her precious, tender words my mature little 3 yr old says, "We just need to tell Jesus to take care of my friend, Zoie. It's ok, Momma ... He'll take care her." She's so right and who could ask for more than that?

We love you all bunches and thank you for allowing us to share in our joy as well as our heartaches. May God bless you richly for your love and prayers you share with so many.

Only By His Grace,
Emma Grace, Eli, Barney & Trish

Tuesday, June 22, 2004 12:02 PM CDT

NEW PIX!! Also, check out Zoie & Stanton's website for more...they are precious and priceless!!

Hello Everyone!!

Obviously, I have yet to obtain my goal of updating everyday like Mom Tina and I've given up on trying to keep up with Mom Chris - she actually can get more than once a day in. I love reading their entries as well as all the others as we gain strength and inspiration from them. God certainly knows what to lay on our St Jude mommas/daddies hearts so they can share with everyone. Thanks for following your hearts!

Well, Emma Grace is doing just wonderful. She finished her 4th round of chemo on Sunday which will probably be it for awhile. I chance to say when we go back to St Jude June 28th the scales will reflect her growing appetite. She is in FULL GEAR and having quite a time being at home. I quietly watch her and Bubba smooshing play-doh or chasing lightnin' bugs (I know you probably call them "fireflys" but us country folks call them "lightnin' bugs! ha). Anyway, it puts a smile in my heart to see them having such a good time and enjoying time at home. I've even found myself thinking back of many days of old when I would feel the same thrill of chasing lightnin' bugs, darting left and right to capture the best ones. Of course, she had to put them in her bug box, somehow they ended up spending two nights in the house and expired. Emma Grace thought they were asleep - all the better. Oh well ... more to chase later.

We received word that our trip to Philly is scheduled for July 22nd (ok...a month away now!). She sees Dr. Maris on July 23rd, admit to hospital on July 26th and her nuclear treatment will be the 27th. Our understanding is the treatment actually doesn't take 15 minutes. The remainder of her hospital stay will be getting her radioactivity down to an acceptable level and she should be released by that following Friday. Daddy is going with us which is a huge relief. I have gotten so spoiled to him being with us over the past two years and then actually have "flown solo" since March so it is such a blessing for him to be able to go with us. God provided the funding through our dear church family for Daddy's airflight and we are so thankful for His handling things. That's one less thing to have to worry about. Sherri, from RMH, already has contacted Philly RMH to get us "on the list". Thank you Sherri for looking out and taking care of us. God's mercy and grace never cease to amaze me even before we ask.

As you probably already have heard, PRAISES! PRAISES! for Christal's surgery last week. Everything that was suspected to be a problem was not. No nerve involvement that controls the swallowing center, the tumor was encapsulated and was a COMPLETE RESECTION!!! IT'S ALL GONE!!! God certainly held Dr Sanford's hand in completing this very risky surgery and especially, held our Christal close to His heart protecting her all the way. Thank you so much for your prayers! God is so very good!

You all know Max Lucado is one of very favorite, God-gifted writers. Ok, ok ... He's my FAVORITE! ha! Anyway, from the book, "Safe in the Shepherd's Arms" one chapter heading is "Your Rod and Your Staff They Comfort Me" and it goes on to say ... "God has proven Himself to be a faithful Father. Now it falls to us to be trusting children." OUCH! Does that step on my toes!! Sometimes it is so easy to fall into the worries, troubles, what ifs that lie ahead with our baby girl. It does nothing but depress and make my attitude suffer which in turn lets everything and I mean EVERYTHING seem heavy with dark clouds. And why?? Do I not say over and over to keep looking up?? Have we not proclaimed many times that God is already there ... He knows all about it?? So why in the world can I let satan raise those fears and doubts when I know all the above and more to be true?? When I see it as being a "Momma pity party", I think God sees it as needing my attention directed to Him more than ever. Holding tighter to His neck with my head buried under His chin giving Him our problems letting Him take those worries and fears away with a love beyond all loves. God's love. We protect and comfort our children in the same way, why do we doubt God does the same for us? Mr. Lucado writes (excuse my paraphrasing...) that He loves us so much "I have written your name on My hand." (Isaiah 49:16). What matters to us, matters to God. No matter how big or small. "The Father has loved us so much that we are called children of God. And we really are His children." (1 John 3:1) So, why should I let doubts come in to make my days cloudy?? We're His children and He takes care of us better than we can ourselves. I have to keep reminding myself it's a daily battle but God wins ... PERIOD! We're His children ... who could ask for more?

Ok ... that was the sermon addressed to me for today. I'm a momma who obviously worries. Those worries belong to God and that's where they need to be left. Thanks for allowing me to share my heart this morning. As many of our St Jude mom's have said, this journal is as much for our coping as it is for keeping you updated.

Please keep our many St Jude friends and families in your prayers ... Stanton starting round 4 of chemo. They will be doing bone marrow aspirate prior to starting. Spencer is back into the hospital in Florida. Kelly King, Bailey's mom, has a breast cancer recurrence. Finding out what her options of treatment are. There are so many more that I'm sure I should have mentioned but God knows each situation. We praise Him for the children who continue to be cancer-free. He is in the miracle business, you know.

Little Miss Zoie is having surgery as I type for a fungus that has developed in the recent surgery site on her head. She also found out last week that the tumors on her liver are growing. Her counts have not recovered enough to start her on chemo yet and they are needing to try to stop the growth on the liver. They will not be able to do radiation on the liver as once thought, just too risky. We just pray for God's strength and guidance in the decisions they are facing.

As always, we are so thankful for your love and friendship that we know is a direct gift from God. Please know that my delay in updating is often from not taking time to sit down and do it but sometimes it is from sitting down and not finding the right encouraging words to say. Please pray for not only our strength to face days ahead but also for our many St Jude friends who continue to fight their battles so bravely. God is victorious and deserves all the glory for all the marvelous, miraculous things He does for us. Most of all, for His love which is unlike any other love we could know. And I certainly thank Him for His unconditional love.

May He grace your day with an over abundance of His blessings!! We love you and thank you again!

Only By His Grace,
Emma Grace, Eli, Barney & Trish

www.caringbridge.org/la/zoie
www.caringbridge.org/la/stanton
http:/christalinfo.servemp3.com

Wednesday, June 9, 2004 10:13 AM CDT

JUNE 15, 2004 UPDATE: KEEP THOSE PRAYERS GOING AS MISS CHRISTAL IS HAVING HER SURGERY TODAY, TUESDAY AT 7:30AM!! PLEASE PRAY THE SURGERY IS A COMPLETE SUCCESSFUL RESECTION WITH NO COMPLICATIONS!! THANKS CREW!!

Blessed Greetings to All!

In effort of "doing better" with my timely updates, here's the latest of this week's visit. My ultimate goal would be doing daily updates as my dear friends Tina & Chris ... but let's be realistic ... this is Trish we're talking about! ha!

Emma Grace saw her favorite "wild man", Dr. Santana, as she calls him on Monday. She's doing another round of iriontecan and we go back to St Jude on June 28th. We have an official date to see Dr. Maris @ Children's in Philly on July 23rd. Not sure if that is the date of tx or if that's the first date to see him ... awaiting a call from Philly to get confirmation. So we estimate that we'll be headed to Philly 2nd or 3rd week to do the nuclear tx that we've had in our gameplan. They thought we should be there about two weeks. Wow! Talk about a vision that should remind you of the "Clampets" headed out of the hills to go to the big city!! We have heard such wonderful things about Children's in Philly and are in great expectation of what God is leading us through with this relatively new treatment. Our prayer is we can get the "beast" gone for good. I'll update further as we are informed.

It was such a blessing to see our dear little friends, Stanton & Zoie. They both are doing very well. Stanton was all "puckered up" with lots of kisses for his "Emma Gace". The kids had fun playing together at RMH Sunday night. The visit was just short & sweet as we left Monday evening. Zoie had radiation on Monday, Stanton needed blood so that took a good part of the day in medicine room and we had to depart for the airport by 5pm. It was sure great getting to hug necks even though it was brief.

Tina, Chastity and I went to BMC which is the department that does all the wonderful photography for St Jude. We tried to pick our favorite pix of our babies which was a difficult decision to say the least ... they were all adorable. My favorite was Zoie, Stanton and Emma Grace all hugged up in one shot. Wow ... the stories those three sets of eyes can tell and who could have imagined the lives these children as well as all our St Jude friends have touched thru their extraordinary journeys. We had a heartwarming surprise that there are two different poses, one of Zoie and one of Stanton & his lovergirl, Emma Grace, that will be displayed on the walls of St Jude. Thank you friends of BMC first of all, for your patience in getting those pictures that speak volumes and for using your God-gifted talents of being the best!! Your friendships are priceless treasures to our families.

As mentioned in my previous update, our dear friend, Christal, is having her brain surgery on Friday, June 11th at LeBonheur. UPDATE: SURGERY MOVED TO TUES JUNE 15TH. This tumor recurrence involves the brain stem and is quite the risky surgery. We just pray for Dr. Sanford's guidance for God to lead him through making this a successful resection with no additional side effects for our girl. Please also remember Chris, Drew & Grandma for their comfort and strength during this time. They will be traveling back to Memphis today and we are just placing a angel on each wheel for their traveling mercies. Her website is http://christalinfo.servemp3.com

I'm going to borrow a quote that Tina used on June 3rd entry which I'm sure many of you have already read but I feel its worth reiterating as it continues to speak to my heart. "As a mother, my job is to take care of the possibles and trust God for the impossible." It's so easy to let the worries of what we think are impossible bog us down. I think when that small, five-lettered word that has an enormous meaning "trust" is factored into the equasion the significance is magnified. But when "trust God" is placed together ... the meaning is stretched beyond our understanding. The "impossibles" seem to be handled in His divine way. I don't understand it and won't ever in this life but God does and that's all I need to know. Trusting Him is my job for those impossibles that seem to face us. So, like Tina, there is where I leave them ... in His hands.

In our recent Sunday school lesson, we were studying in Acts about Peter having the honored blessing of preaching to the first church. In our discussions about Peter, his boldness for standing up for Jesus and preaching the gospel at every opportunity he could once he was "filled with the Holy Spirit". It wasn't until Jesus was crucified, buried and arose from the grave that Peter or any of the disciples were filled with His Holy Spirit. Peter loved Jesus so much that when he saw Jesus walking on the water, he immediately wanted to go to Him. As long as he kept his eyes on Jesus, Peter also walked on the water. When he looked around at the waves crashing upon him, he sank. He reached for Jesus' hand to keep from drowning. That's the reminder I want to share today ... just as Peter trusted Jesus, God's Son, for what was thought to be impossible of walking on water, he kept his eyes on Jesus to bring him through. The very same goes for us today ... His Hand is there, unchanging, to carry us through whatever trials we are facing. It's wonderful to know that same Hand is there to hold everyday during the Sonshine or the rain.

Acts 2:25-26 NIV "...I saw the Lord always before me. Because He is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will live in hope..."

Please continue to remember Emma Grace as well as her many St Jude siblings who continue to fight with the most incredible strength imaginable. Only God can give them the strength to carry on as they do so graciously! We love you and thank you always for being such wonderful blessings in our lives ... especially for your love and prayers!

Only By His Grace - Emma Grace & family

Wednesday, June 2, 2004 10:23 AM CDT

(OK>>>>I'm on a roll!!! New Pix just updated!!!!)

Well now...one would think I have gotten numb to the ridicule of not updating and the jokes of not knowing how to push the buttons on the keyboard ... so as Jeff, Stanton's dad, would mock ... I'm gonna "GET 'ER DONE!!!" (Thanks to all for your loving "gentle and not so gentle persuations to get on the stick and get this update done!) I know, I know ... guilty as charged. I guess I figured that everyone's still recovering from the over-lengthy entry prior to this!! HAHAHA

Home-home has been quite therapeutic and therefore, we have been laxadazical (spelling??), just enjoying home-sweet-home. It's strangely unsettling though as the suitecases don't really get unpacked, the laundry is just rewashed and ready for travels again. My mindset is sometimes equally unsettled ... we are now in the transition of getting set for Philly which is going to be a whole new experience that we are getting geared for. Emma Grace's cancer is still stable and upon returning last week for a checkup, Dr Santana told us that he was already in contact with Dr. Maris in Philly and we should be headed that direction the 2nd or 3rd week of June. We will know a gameplan when we return to St Jude this coming Monday. I will update as soon as we know something for sure. Ok ... God knows the way, right? So we are just following His lead. He is so good to love us unlike any other love we can imagine.

First and foremost, I need to relay urgent prayer requests. You will recall the recent scare with our dear little friend, Christal, who seem to have an MRI that showed something. The PET scan revealed it not to be recurrence of cancer. They returned to St Jude for a followup MRI yesterday and the spot that was suspicious 6 wks ago is actually a tumor. It is twice a big as it was at last scan. Chris told me last eve that they will probably do surgery at LeBonheur on Friday. She will know more today after visiting with Dr. Sanford. As you may or may not know, mom Chris is expecting a baby in December as her pregnancy as not been easy so far. Please pray for this precious family as God is full of love and strength that He is wrapping them with as we speak. Our hearts break for them as they will be facing yet another surgery and more treatment. Ependymomas (brain tumors) are usually very treatable the first time. God knows and has this all under control. It's just so hard to know the beast has returned.

Kelly King, Bailey's mom, who had breast cancer and had finished treatment just a couple of months prior to Bailey's diagnosis in Feb 2003. She had reconstructive surgery for the masectomy. Last week the left side (I believe) had to redone. Kelly told her surgeon she felt a cyst and he removed it feeling like it was just a cyst and nothing to worry about. Pathology report shows it is cancer. They have caught it early but her doctor was very surprised as she has no breast tissue since her masectomy. Kelly just found out yesterday morning prior to leaving on their flight back to St Jude for Bailey's continued leukemia treatment. Please also pray for these dear friends who are continue to battle not only Bailey's cancer but now a recurrence of mom, Kelly. Bailey is doing much better since her recent hospitalization in Florida and is back to continue treatment at St Jude.

Miss Zoie is doing very well. She started an alternative med last week that we are praying to be effective. She is still doing radiation, on the head only for now. Please continue to pray for the Schexnayder's strength and comfort from our Father. They are such fighters and as mom Chastity told me, they're gonna keep fighting. God hears our prayers and we just pray for His will in Zoie and all our children's lives.

Our little man, Stanton, is having his scans and tests this week so they can hopefully start another round of chemo. They're future plans are Philly also so please pray the chemo is continuing to do its job so they can proceed as planned. We sure have missed Zoie & Stanton and families and are looking forward to seeing them on Sunday. Stanton get puckered up for catch up kisses on Emma Grace!!!

While we were there last week St Jude took pictures of our three little angels. It was precious and priceless!! Zoie and Emma Grace had Stanton in the middle and gave him kisses on each cheek while being photoed!! Ooooohhh!!! Can't wait to share those with you all. It's amazing the bond these kids have ... strangely, they are all three neuroblastoma kids but I don't think even they know that. They just have a undescribable bond, you know the kind I was talking about with Eli & Emma Grace. It's a sibling thing that only they & God understand. It's not only these three precious babes ... there are many of our St Jude babes that we have been so blessed to meet. It never matters how long its been since these St Jude Siblings have seen each other, they always pick right up where they left off. It's almost like they know something we don't and most likely that's true. I think God gives these special children and understanding like none other.

If you get a chance, check out the NBA.com website and select the Memphis Grizzlies section. You will see a very familiar little girl in a couple of the pix (not sure who that momma is?!?!?) Go to the story listed Team visits the Memphis Grizzlies House and view the pix. http://www.nba.com/grizzlies/

Emma Grace & Eli are having a ball getting to play with the horses, help Nanna & Poppa at the farm, just be together for a change getting to be kids. These are those precious moments that used to be taken for granted but somehow God has showed me now to even enjoy (strangely) the fuses between these two little darlings. Whether they're fussin or playin, the bond of love between them is one that is priceless.

Daddy was off work Monday so we made our annual trip to Pumpkin Hollow. (Yes, there really is such a place!) It's a beautiful valley in the edge of Cherokee county, Oklahoma and that's the resting place of Barney's dad and family. It is always so breathtaking to drive way off the beaten path to this little cemetery as it is so peaceful and quiet. Emma Grace's great-grandmother, Emma Pumpkin, is also buried there and this year Emma Grace wanted to place the flowers at her grave.

Once again I'm reminded how very fragile our lives our and how life here is just for a moment in God's eyes. I called dear Sonya, McKenzie's mom, on Monday hoping to give her comfort in knowing we are thinking of them always. As usual, I was the one who hung up the phone thanking God for the blessing that Sonya gave me in sharing her heart and her faith in God. I hope she doesn't mind me sharing this as it certainly blessed my heart as I hope it will yours. She said that she has learned that our lives are vessels that we are to prepare for the day God calls us home. And that some "vessels" get ready before others. She said McKenzie was one of those ... she came, got ready and God called her home. Something else she shared that really hits home is that she said she just got too comfortable in this old world prior to McKenzie's diagnosis and that we're NOT to get comfortable here. We talked about the old southern gospel song "This World is Not My Home" that says ... "this world is not my home, I'm justa passing through, my treasures are laid up somewhere beyond the blue." How very real Sonya's committment to her faith and that God is going to call us home ... when He is ready, so we have to be ready. I told Sonya as I have shared with many of you that I have been quite "homesick" lately and have asked God why not just come back and get us? This would all be behind us and our worries would be over. As Sonya said, it's when God's ready, so we need to have our hearts ready.

Well, believe it or not... I'm gonna close for now. The sun's a shinin' and we've so much to be thankful for. Most of all we are so thankful for you, for being there, being patient for my obvious human errors, for your prayers and most of all, you love that is given by none other than our Father. May your day be blessed with all that God has to offer! This is my daily reminder when the days seem darker than I would like ... Keep My Eyes on Eternity. Hang on ... He's there to carry us through. We love you!!

Only By His Grace - Emma Grace, Eli, Barney & Trish

Titus 1:2 "In hope of eternal life, which God, who cannot lie, promised before the world began."

PRAISES -
Zoe Jo Wolsfeld - had a recent scare with scan showing "something". It was determined to be feces showing up and they are treating her for the problems with holding when needing to go. Praises for constipation!!www.caringbridge.org/il/zoejowolsfeld

PRAYER REQUESTS -
Christal Reynolds - brain tumor relapse, upcoming surgery. Her website http://christalinfo.servemp3.com
Ben Bratton - neuroblastoma friend - relapse back in tx
Zoie Schexnayder - surgery & relapse and started alternative meds www.caringbridge.org/la/zoie
Dalton Corlette - neuroblastoma friend - 2nd relapse
Stanton Haynes - chemo treatment for relapse www.caringbridge.org/la/stanton
Dustan Heaton - having lots of complications with pain meds and tumors are growing.
Spencer Beckstead - in Florida doing better daily. Talked to John yesterday and Spencer continues to make small improvemennts.
Bailey King - back at St Jude for tx. Mom Kelly and her upcoming tx for recurrence of breast cancer.
Nuclear Med Nurse, Lisa Mills - still off work and may do surgery soon

The Rest of Our St Jude Families who are in the battle, the dear families who have had to let their precious babies go home to the Lord and the Praises for those who are in remission.

Monday, May 17, 2004 10:37 AM CDT

Greetings All from the Home-Homefront!

Well, it is quite justifiable to question if I still knew how to type! Well, yes & no ... our computer at home bit the dust and I didn't take time while we were in at St Jude last week to update ... sorry. But we are back in the world of technology again and it sure feels good. It's hard to be "out of touch" so bear with me while I try to catch you all up on all the latest ... KICK YOUR SHOES OFF 'N SIT A SPELL ... THIS COULD TAKE A BIT ... (I'd hate to let Tina down by a 'short' entry. ha!)

First, let us say thank you so much for the wonderfully encouraging messages you are so kind to send. It is so marvelous to know that God sent so many blessings with friends/family like you. Thanks so much again...you cannot know how you touch our lives and our hearts!

Emma Grace is doing very well. She started round #3 of chemo again as the tests last week showed to be stable. That is an answer to prayer as there is no additional growth and that says the iriontecan is doing what it needs to. We had a few areas to show decrease but overall stable. Dr. Santana is in contact with the doctors in Philly to report the recent testing and said they will proceed with trying to get her placed for treatment there. This could take 30-45 days and we should have an update by our next visit which is May 24th. I think it is just a one day trip as she will not finish her chemo until the 25th, then a 9 day break before doing scans again. Emma Grace is gaining weight and growing not to mention just being quite the little "expressively active" 3 yr old. Quite headstrong that one is...and I only thought I would pay for my raising with Bubba Eli!!! HAHAHA

Miss Zoie came back to St Jude last Wednesday as a CT scan showed that her cancer had returned as well. She had been having headaches and the scan showed a small tumor above her left ear. Travis & Chastity brought her back to St Jude where they met with the doctors who had her set up to go to LeBonheur. Dr. Sanford had planned to do surgery that Friday in hopes of letting the steriods bring down the swelling. After admitted to LeBonheur that night she started having more complications and it was determined the swelling was increasing and they did emergency surgery about 5am Thurs morning. The surgery was very successful as the tumor was small, had not spread to the brain and the bleed they had seen was inside the tumor itself. In other words, as brain surgery goes, it went very very well. God certainly has His loving Hands around our little Zoie and guided the best of the best to handle her surgery with precise care. I talked to Chastity yesterday and Zoie is to be released today, going to St Jude to start tests on Tuesday to see where to go from here. Please keep them in your prayers as this has been quite a shattering experience for our dear St Jude family. Relapse is never what any of us wish to hear and we know the battle is back for them as well. Zoie's website is www.caringbridge.org/la/zoie. St Jude Mom, Tina, (Stanton's mom) has been updating for them to keep everyone informed. If you get the chance to leave them a note of encouragement, I know they would certainly appreciate it. Chastity always asks me to tell folks to keep praying...that's what they need. I tell her we've got that base covered, don't we crew? Thanks!

Last Monday we were running ahead of schedule and we waiting/visiting in D-Clinic with more of our dear St Jude family. As I look around it is primarily neuroblastoma kids. My heart sank as I count 6 families whom we have gotten quite attached to thru our journey. Out of those 6 precious children in that immediate area, 5 have relapsed. Then I start counting neuroblastoma children that we lived with at RMH at one time or another during our first treatments. A total of 13 kids with 7 of them either relapsing or have never been totally cancer free. That is staggering to me, and heartbreaking to say the least, even though we have always been told how violent this beast is ... but it became crystal clear we're just not there yet on having the cure to combat this beast for good. God is so gracious in giving us such dear families to share in the journey that He is leading us through. We thank Him always for leading the way. Our focus is keeping our eyes on Him ... He knows the way. Looking Up and keeping our eyes on eternity. 2 Cornithians 4:18 "So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal."

Weekend before leaving for Memphis turned into a sobering struggle that resulted in an Answer ... the kids were gone for the day, Barney at work, I was home doing the "Momma" things - washing clothes, catching up, getting ready to go back for tests and scans again on Monday. In the quiet of the day, I was asking God about all the upset going on in the world today - the war, the tragedies, the crimes, the morality being down the tubes, the sickness and above all - our children who we've had to say goodbye to for now and our babies having to fight everyday this beast called cancer. Trust me, we are blessed and very thankful to be at St Jude but I have to say - that feeling is accelerated when we see SO many of our children that struggle and fight constantly and yet with grace. It just breaks our hearts. I just had to ask Him not why but when, when?? I know you see everything that's going on, wouldn't it be a good time to come bustin' through those clouds and take us home?? You know what He reminded me? He's not through yet. Then He gently guided me to a verse in 2 Peter 3:8-9 "But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow keeping His promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance." Ok Lord, ok. We're to hang onto You thru this world and what it holds. When the days seem long and unbearable at times, a day is not a day to You. But most of all, You, Lord are not willing that ANYONE should not live with You forever but that EVERYONE needs the opportunity to come to You for life everlasting. I thank God for our time together, for the quiet reminders of being faithful and trusting Him to lead the way and for His gentle, still voice that spoke to my heart. The heartwarming humility of His mighty goodness is too overwhelming to translate with mere words, they can only be spoken of the heart.

These precious babies belong to God the Father and as much as we love them, He loves them more. We had a dedication service for Emma Grace when she was a baby giving her to God for His service and His purpose. God knows our hearts are sincere in giving her to Him in that service. We actually weren't giving Him something that wasn't already His. Tina said it best that He has given us such a miraculous gift and blessed us in allowing all of us to mother and father these precious babies.

Emma Grace was wide awake on the early flight to Memphis last Monday and was a live wire. We had to fly way above the clouds and she was taking it all in. She looked at me and asked if she could walk on the clouds. I tried to explain that they wouldn't hold us up as they are like smoke and we are too heavy. That didn't seem to pacify her so I added that one day when we go see Jesus maybe He'll let us walk on the clouds. She was thrilled and I am looking forward to getting to see that day ... but only when God says it's His time. Daddy Barney's reminder "His time, His place, His way". I'm so grateful God graced me with a big, loving, strong, yet gentle husband who fully loves and trusts our Lord. We take things for granted at times and the stresses seem to overcome when we seem consumed by Emma Grace and her battle. I certainly do not feel I deserved such a wonderful husband who loves me so but I'm so thankful and to walk beside him holding his strong, gentle hand in our journey.

Well, I made a list of subjects I want to cover and as I re-read, I'm getting lengthy so let me quickly condense and wrap this up. Emma Grace made a great "escape" from D-Clinic as she hijacked a trike, when sailing down the halls at a high rate of speed. She zipped past our dear sedation nurse, Rita and shouted over her shoulder, "C'mon! Mom's outside!!" Well, needless to say, I was downstairs (not outside) and came back to a panic look from Tina as she thought she had "lost" my child. Yeah right, Emma Grace knows her way around The Jude not to mention most of the folks there so I knew she wasn't "lost". Rita had stayed with her herding her back to D-Clinic. That was on Monday.

Tuesday we go fishing with Mr. Stanton, Jeff & Tina at Shelby Farms. It was a grand time by all. Tina was taking pix, shooting video, the kids (and Jeff & me) are catching fish, just a fun time by all. Well, Emma Grace decides she's going to sit by Tina on a plastic tablecloth that she had spread on the ground. She straightens with a jerk and the camcorder (which was on the cloth) when rolling down the bank headed for the water's edge. Tina froze thinking it would stop, Emma Grace ran back to the safety of Mr. Jeff's lap who was also holding Stanton and two fishing poles, and I dart for the rolling technology. I slide into the water with one foot, one hand goes into a snake hole (which we had kept a careful eye on) and the camcorder GURGLES in the water about the time I reach it. OH MY OH MY!!! Looks like my daughter has struck again!! I think her birthday allowance may have to go for a new camcorder!! HAHAHA Of course, Tina had fun teasing me about not having the afternoon's memories to share with anyone, not to mention Stanton's first Honorary Tee-Ball event. EEEEECCCCKKK!! Of course, it would happen to "Grace" and her daughter, Emma Grace (who is obviously living up to her name!!)

Saturday was the festive event of my cousin, Janet's marriage to Justin Cobb. Emma Grace was all excited about going to the wedding. She said she had to wear her "wedding dress" that she wore as flowergirl in Nurse Ashley & Dr. Stephen's wedding. Ok, ok ... I pick my battles these days ya know. So she wears her "wedding dress". My neice & nephew, Danielle & Jimmy, came with their families for the event. It was so wonderful to get to spend time with them which seems few and far between for ole Aunt Trish. Anyway, Janet looked FABULOUS and just as beautiful as ever. She made Emma Grace's day by asking her to walk down the aisle with the other little ones in the wedding!! They all took their shoes off and it was just precious! Surprisingly, Emma Grace did rather well and stayed up front the whole time. She adjusted Janet's veil, waved at family in the crowd and finally, just sat on the stage until the ceremony ended. Of course, she NEVER let go of the paci for a second. But she did well. Best of wedding wishes Janet & Justin! Love ya!

Thank you all for #1 your time and patience in reading this ever so lengthy entry. I will try to do better, I said "try". ha! And most of all for your love, concern and prayers for our Emma Grace and dear friends. We love you all and are ever thankful for your walking this journey with us. You can never know...

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PRAISES:
Sarah Claire Holder - Scans Clear!!
Stanton Haynes - Progress with the chemo, starting round #2 of chemo.
Zoie Schexnayder - Successful surgery and thanking God for getting them to Memphis when He did.
Lindsey Drue - our Relay for Life friend who finished her last course of treatment for A.L.L. (leukemia)
Emma Grace - report of tumors being stable starting round #3 of chemo.

PRAYER REQUESTS -
Ben Bratton - neuroblastoma friend - relapsed
Zoie Schexnayder - surgery & relapse www.caringbridge.org/la/zoie
Dalton Corlette - neuroblastoma friend - 2nd relapse
Stanton Haynes - chemo treatment for relapse www.caringbridge.org/la/stanton
Dustan Heaton - having lots of complications with pain meds and tumors are growing.
Spencer Beckstead - in Florida but back in hospital. haven't heard the latest but was running high fever.
Bailey King - out of ICU and feeling better. Hope to come back to St Jude soon.
Nuclear Med Nurse, Lisa Mills - a sweetheart we've been spolied by, fell and injured her back. May need surgery ??
Two Prayer Request by dear friends Les & Jeananne -
Kim, young mother battling cancer and having lots of complications.
Breanne Daws - 2nd grader from Little Rock ( I think) who has relapsed with her cancer and it has spread to several places.
The Rest of Our St Jude Families who are in the battle, the dear families who have had to let their precious babies go home to the Lord and the Praises for those who are in remission.
Thanks Crew...you are the BEST!!! love ya!

Saturday, May 1, 2004 5:07 PM CDT

Howdy do to All! And Happy May!!

Well, I have been thinking that a weekly entry was pretty good for me but Mr. Stanton's Momma, Tina, has "shamed" me into doing better! OHHHH THE PRESSURE!!! HAHHAHHAHA She is really good about updating far better than me!

Emma Grace is back!! And I don't mean just back in Memphis! I mean, we have our little girl back. She just needed to get those nasty frustrations out of her system for awhile, get some new scenery and let it all hang out. Praise the Lord am I glad that week is behind us!!! That's not one I care to repeat!! Not to say it won't happen again but I'm very grateful it has ended for now. Tina said they had given Stanton an "altered ego name" of "Stanley", well, we gave Emma Grace one as well, "Ellie Mae". Seemed to fit as she's strong as an ox when the tantrums would hit and she runs around barefooted most of the time!! Besides, it gave us something to laugh about.

Our trip to our "hide-a-way in the Delta" at Cleveland, Mississippi was MARVELOUS!!! and therapeutic for all!! Getting to see Daddy was a HUGE antidote for Emma Grace as well as Momma. And just kicking back not having a schedule was even better. We sure took advantage of Mimi Sharyn & Monica's hospitality and LOVED every minute of getting to spend more time with them. Emma Grace is right at home there and started feeling back to her old self again! We were able to stay until Wednesday which made a world of difference. Needless to say, they spoiled us rotten and even though we had a longer stay, it made it harder to leave. They had their Relay for Life/American Cancer Society event last night and raised well over $75,000!! Whooo WHOOO!!!

Emma Grace has done very well with the 2nd round of chemo. I feel part of it is having the anti-nausea meds onboard before we started made a BIG difference. She hasn't had one episode of vomitting and very little diarrhea! YEAH!! AND THANK YOU LORD!!! Dr. Santana wants to see us back in clinic on Monday @ 8:30a and we are already scheduled to head home that afternoon, Good Lord willing. It will be SO SO SO nice to get back home!! We will probably return the week of May 10th to do more scans, tests, etc to see what's next. We are praying the chemo is continuing to do what it is supposed to so we can get in position to head to Philly. Just have to wait on the results to see the game plan. Emma Grace is anxious to get home as Flit, our mare, had her baby on April 28th. Strange enough, that is Emma Grace's one year birthday of transplant. Daddy named the little filly, "Emma's Little Flit". They brought us pix and the little darlin is ALL LEGS! She's gonna be tall like her momma. Both are doing great!

Emma Grace & Stanton have been having a blast. If they aren't kissin', they're fussin'. (Just like brothers and sisters, wouldn'tcha say??) Well, they are St Jude siblings. We are so thankful as they have just taken care of us these past two weeks. Poor Daddy, Jeff, he has been such a trooper to put up with two women, not to mention, two 3 yr olds on CHEMO!!! Stanton is doing pretty well with his first round of iriontecan. We are praying it is taking the nasty beast down as well.

I had a Momma-sized treat this week of getting to do something for MOMMA. Mel, St Jude Mom of Macy Morgan, is a hair stylist and GAVE ME A PERM & CUT!!! WHOOOO WHOOOO!!! I feel as happy as a pig in mud!! You know, you just feel better getting to "primp" whether you look better or not!! Mel, David, Macy & Sophie spoiled us by being our "taxi" service to and from their beautiful home out in the country. Well, by the time we got dinner over with, kids playin' and beauty parlor complete, it was after 1:30am Friday morn before we got back to the Grizz House. But it was sure fun and gave Momma a new lease not having to fuss so much with my hair that was getting pretty pathetic! God certainly is so good to bless with such wonderful families that we would have never had the opportunity to meet had it not been for our journey thru St Jude.

On Wed evening, Stanton & Emma Grace and the rest of the kiddos at the Grizz House got to meet Memphis Grizzlies Coach, recently honored as NBA Coach of the Year, Hubie Brown and an outstanding man & player, Shane Battier. "Grizz", the grizzly bear mascot, was here when Emma Grace & I first came downstairs and you know how she is with folks dressed up!! Well, she hid her eyes at him and he did the same. It wasn't long until he left which took all kinds of stress off Emma Grace. She started hammin it up then and boy, did she!! She was acting quite silly with Coach Brown & Mr. Battier. They both were very sweet gentlemen who are obviously dedicated to "our kids" by not only their generous donations of this beautiful home provided but also by spending such fun, relaxed time with the kids. Everyone had a great time getting to meet them in person and it was wonderful to be able to thank them as a parent for the home they provided for families just like us.

Mr. Stanton was alittle shy in meeting Coach Brown so Emma Grace took Stanton by the hand and led him over to Coach. She looked up and said, "Brown (not 'Coach' or 'Mr', just 'Brown'), this is my buddy Stanton!" Well, needless to say, we were hooting at her boldness. (Gee, wonder where she gets that?!?!?!? HA) They were signing autographs for everyone and had a feast of food for fun & fellowship. It was great! Emma Grace teased Mr. Battier enough until she gave in to give him a big, ole "Emma Grace" hug before we left. Can't wait to get copies of pix on that unique Kodak moment.

Good news...Little Zoie Schexnayder has a donor match!! Hallelujah!! They will be back May 18-19 to plan for the upcoming transplant. Also, Mr. Spencer has made small but great improvements this week! Earlier this week, he scratched his nose!! Friday, ate half a jar of baby food and today, sat up in his wheelchair for 1 1/2 hrs!! They are planning on going home next Tuesday, maybe if all goes well. They will be doing rehab at home in Florida.

Please continue to pray for our many St Jude families who bravely fight their battles and praises for those who continue to have clear scans of cancer-free!

Please keep Mr. Dustan Heaton in prayer as he is struggling with tumors that don't seem to want to go away, in fact, have multiplied. We saw him on Wed and was in considerable pain while still receiving chemo.

Also, our little darling, Bailey King, is in Florida in the hospital with C-diff. A nasty bacteria in her colon. She is not going to be able to come back to Memphis for her next round of chemo next week until they get this under control.

Dalton Corlette, one of our little buddies with neuroblastoma, has also relapsed for his second time and just started the iriontecan treatment last Wednesday. He is such a little man and we ask you pray for his body to respond well to the new chemo.

Stanton Haynes, www.caringbridge.org/la/stanton, who is in process of receiving round one of chemo. We (the unlicensed medical opinion of St Jude parents) feel like the tumor around his eye has decreased which means the chemo must be doing something. They will be doing "sneak peak" scans prior to starting round 2. Pray our untrained opinions are right on target and the chemo has made a difference in him as well.

Guess, I better close for now...Daddy & Eli arrived last night and talk about the Hampton crew having smilin faces!! We still do! They are headed back Sunday after church with the Garrett family then we should follow them via the skyways on Monday.

We love you all and thank you for always being strong holds for us. We especially thank you for your continued prayers for our Emma Grace and her friends. God is polishing special jewels for your compassion-heavy crowns. May your today be everything you need and then some!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

One of my very favorite scriptures -
"Be joyful in hope, patient in affliction and faithful in prayer." Romans 12:12

Saturday, April 24, 2004 9:21 AM CDT

Well now...I can just hear ya'll saying "what in the world is going on?!?!? why hasn't that Momma Trish updated?!?!?" Ok ... justifiably so and I am certainly sorry for the delay but let me tell you ... has it EVER BEEN A WEEK!!!! It hasn't all been challenges and we have seen many of our RMH roomies this week ... it's almost been like old home week. First, let me tell you the status of scans & treatment with Emma Grace then the week of challenges so you'll know how grateful we are for the blessings ...

Emma Grace did a CT Scan on Monday, bone marrow aspirate on Tuesday and MIBG scan on Wednesday. All have shown either stable status or improvement so Dr. Santana said he wanted to start her 2nd round on Thursday. We had to know that the chemo was not allowing further growth of tumors in order to proceed. HALLELUJAH FOR THE PROGRESS!! Well, we sprang a pin-point leak in "Bertha" (our white central line) and they had to repair with new lines. That was an experience all its own because Emma Grace was none too happy that we were changing out Bertha & Leonard! We now have Fred & Wilma who are working just fabulous! Hey, we depend on our little friends for "no ouchies" so it was finally "OK" to Emma Grace - when we were finished!!

We will re-eval after the 2nd round of chemo to see what's next and how well we are still progressing. I have tried to concentrate on the "here and now" and not worry or focus on what's ahead. God's there and He knows all about it.

We got back into Memphis at 8:10am Monday morn (which meant we were at the airport at 5:50am!!) and little Miss Emma Grace just snoozed & slept until we landed at Memphis. All was well in her world until we got back to St Jude. Then I am here to tell you our little sweet Emma Grace started revealing her version of tee-total FRUSTRATION with this whole cancer situation!! Bless her little heart, nothing made her happy, she made it REAL clear - not only to me, but everyone - that she was not happy to be back for more treatment. How can I expect my 3 yr old little angel to be "happy-go-lucky" all the time?? We have a hard time trying to cope and understand at times so what makes me think it is easy for her??? And other than the fact that I hate seeing her be "ugly" to me and others - by golly, she has a right to express her rebellion and frustrations. So for those dear parents, patients, staff, nurses and Drs. at St Jude that encountered her "expressive anger", I can only apologize for her being out of sorts but I certainly cannot blame her. This is the only way she knew to release. Please don't take it personally and know that hopefully, she will be feeling back to norm soon (whatever that definition is these days...smile). I was really stressed out over her outbursts, especially when they involved folks other than me, but St Jude Mom, Donna Garrett, reminded me that I cannot worry about what other people think. Anyone who knows Emma Grace knows this week has certainly been "out of her norm" and should not be offended and if they are, I just cannot worry about it, I can't control what other people say or how they react. I let my feelings get hurt by Emma Grace's actions to primarily her St Jude siblings and was shocked that even a few parents weren't more understanding to this being "out of her norm". She's just a child and on top of that a child with cancer that has returned and she is FULLY aware of what's going on. The little darling doesn't miss a thing and I would give anything if there were a way to shield her of what's going on in her world.

Ok...I said all that to say this ... this has not been anything close to a normal week that we have been used to at St Jude. Emma Grace has taken everything up to this point in stride and with the dignity and grace of God's little trooper that she is. She's just entitled to vent ... period. On Tuesday we were sitting in D Clinic waiting to see Dr. Santana and we were talking about how much I love her, Daddy loves her, Bubba, and the list went on. I reminded her Jesus loved her the most. To my awakening heartbreak, she told me "she didn't love Him because He came and took her chemo friends with Him". Oh Lord, how can we expect this small child to understand when we don't ourselves? I never knew that's how she saw it in her eyes. I tried to explain that sometimes our little friends are so sick that mommas & daddys and doctors can't make them well and Jesus comes to take them home so He can take care of them where they aren't sick anymore. Well, it was just plain heartbreaking but at least now I knew this is part of what is bothering her.

She & I have had some very tender moments this week in the midst of her "venting". I have continued to tell her how much everyone loves her and its ok to be angry about doing treatment again. One particular morning - in the midst of her rebellion - I just sat with her in my lap and we prayed. We let God know that we don't like this ole cancer, this ole chemo, being away from home, you name it ... we let it ALL out and let God hear it. There was a precious peace that came over us in sharing with God how we feel about this whole stinky situation. I somehow felt it might help to let Emma Grace would know its ok to tell God how we feel and I sure know that it was healing for Momma as well. After we got out all the things we "didn't like" we started thanking God and praising Him for the many things we are happy for. The only time Emma Grace had anything to say was "thank you Jesus for my bear Ms Lisa got me". You know, that was enough. She thought of something she is thankful for at that moment and she told Him.

You have heard us say many, many times before the phrase we have read on one of St Jude's walls, "God doesn't promise us a perfect life, only His perfect love." It is so very true and we are so thankful that no matter how trying our days can be, His love is perfect NO MATTER WHAT. And He's ALWAYS right by our side, carrying our loads when we call on His name.

WELLLLLLLL NOW....leaned on ya pretty hard this mornin' huh??? I know this isn't my normal setting for posts but as you can see this has not been a normal week. We have heard all our lives that we hurt the ones we love the most. That could not be more true .. I know that even though I gasped to hear my baby say she "didn't love Jesus" I know in my heart and in her heart she doesn't mean it that way. Most of all, Jesus knows and He understands far better than we can. And I am so thankful for His love and understanding ... and His patience with us is uncomprehendable.

As I said earlier it has been like old home week. We came in Monday to see all our dear sweet family that we lived with at RMH and met at St Jude. Miss Christal & Chris, who were back for followup scans. They turned to a scare Tuesday evening as the MRI showed "something" that had not been there. We were all devastated and just prayed for the further testing to reveal it was nothing. Praise God!! The PET scan showed NOTHING!!! CLEAR!! WHEW!! That was close! As Chris said it's just being thankful for what we have today ... not borrowing worry for tomorrow because we don't know what lies ahead. Be grateful for TODAY!! Mr. Stanton, Tina & Jeff, who sadly is back in treatment. Mr. Stanton has relapsed with a tumor by his right eye. The really scary thing is it was not there two weeks ago when they scanned and it turned out to be a really bad sinus infection, remember? Well, that's how vile & vicious neuroblastoma is ... gone today, there tomorrow and fast. Mr. Stanton started treatment on Thursday, irinotecan same as Emma Grace but with an additional oral chemo with it. Please pray for the Haynes' as they have gotten "back in the battle" with this nasty disease. Mr Stanton now has a website and please stop by to say hello to them if you get a chance www.caringbridge.org/la/stanton. They are wonderful bro & sis in Christ and have lifted our family many, many times in prayer with their friends & family. I have to innerject (spell?) here ... I cannot imagine the week Emma Grace & I have had without these two precious families. God certainly blessed and knew ole Momma Trish needed re-enforcements this week. Thanks folks, cause I would be completely bonkers by now without your help! Also, Miss Maci, Miss Sophie & Mel Morgan came by for a visit and what a blessing! Miss Tala & Larissa here for followup scans - all clear! Miss Ashley, Donna & Floyd Garrett - one yr out of treatment scans! CLEAR!! The Garrett's have been such a source of strength & wisdom to us that God has blessed in our lives. I've leaned on them pretty strong this week as well...thanks for your calming advice and listening ears! We saw Miss Zoie & Chastity briefly before they headed home on Wed. She was here getting prepared for the upcoming bone marrow transplant which they will find out soon regarding donor status. Please say a prayer a perfect donor is found for our little princess! Miss Karina & Marci back for followup scans ... ALL CLEAR!! YEAH & HALLELUJAH for God's touch on these precious families in our lives. Mr. Spencer was released from LeBonheur and moved to St Jude on Wednesday. Please continue to pray for Spencer & John as their road ahead is long with months & months of rehab. Please continue to remember all our St Jude families to stay strong in their daily fight and also for the praises of such wonderful news we heard this week.

On Tuesday Christal, Chris, Emma Grace & I went to the 12th Annual Ronald McDonald House Volunteer Appreciation Banquet at the St Jude Pavillion - (better known as Gold Dome ha). Our RMH house manager, Sherry, had called last week while we were home and asked if I would give our story and our experience while living at our home-away-from home at Uncle Ronnie's house. Well, who would open the door for us at the banquet but Mr. Ronald McDonald ... this wasn't just ANY Ronald McDonald, it was THE Ronald McDonald. My first thought was, Oh wow then OH NO!! Emma Grace can't stand clowns!! A trainwreck was bound to happen before the night ends. As the night began, she at least took her hand off her eyes, then peaked thru her fingers at him. The more Christal was taken by Mr. Ronald, the more comfortable Emma Grace got. If you can imagine, Mr. Ronald ended up sitting at our table as Christal was loving on him. He just couldn't resist ... who could blame him?? Christal's such a beauty and a loving child to boot. Well, I would have never guessed but before long, Emma Grace was warming up to him telling him how silly he is. We had a great time and was so thankful for the opportunity to thank so many who contribute to RMH and made "the house that love built" our home as well as SO many other families their home while in treatment at St Jude.

We are at Sarah Claire's family again in Cleveland, MS for a MUCH NEEDED BREAK and change of scenery. Mimi Sharyn aka "Hays & Holder Transportation" arrived Friday morn to bring us to our "get-a-way" in the Delta. Daddy arrived here about 30 minutes after we did on Friday as he got rained out of work and was able to leave early. Talk about joyous tears to see His big ole smilin face!! We needed a Daddy-fix!! He will return home on Sunday eve and we will be back at the Grizzlies House on Wednesday. We have labwork & visit with Dr. Santana on Thursday.

Well...seems there is so much more I need to say but you've got to be blurry-eyed from reading now, so I'll close. Big HUGE thanks from the bottom of our hearts for your prayers, your calls, your emails, your love and support to us. You cannot know what a blessing and comfort you are to allow us to pour out our hearts knowing you love and care for us no matter what. I certainly did not intend for this to be a downer entry or so lengthy. I'm continuing to pray for this phase to pass and help comfort & ease Emma Grace. We love you dearly and continue to keep you all in our prayers and praises daily. God is so good to share you with us!!

Only By His Grace - Emma Grace, Eli, Barney & Trish

"But he said unto me, 'My grace is sufficient for you, for my power is made perfect in weakness...'" 2 Corn 12:9

UPDATE 4/26/04: Mimi Sharyn rec'd the greatest email that just fits considering the past week's events with our little angel. God obviously wanted us to read this today to put things in prospective and we want to share it with you...and it goes like this...
"In all that we experience we must remember that God always has the
last word. Circumstances are never final when the Lord is part of the
equation. Far too many Christians let Satan control their lives through
despair because they fail to remember that God always has veto power over situations we face. Sometimes God chooses not to change the circumstances His children face. However, in these times the Lord will change His children by giving us the strength to go through the difficult situations of life. This strength comes as we lift our heads and look at Him as Lord over all." THANK YOU LORD FOR SHARING INSIGHTS THRU OUR EMAIL FRIENDS!!

Saturday, April 10, 2004 6:23 PM CDT

***APRIL 12TH UPDATE...WE ARE HOME-HOME!!! DR. SANTANA GAVE US A BREATHER BETWEEN ROUNDS OF CHEMO. WE WILL BE BACK TO ST JUDE ON APR 19TH FOR SNEAK-PEAK TESTS AND ROUND #2!! LOVE TO ALL!!

Blessed Easter to All!

First, sorry for the delay in updating...just doesn't seem to be the needed hours to drop a line recently. (Really, I got spoiled having Daddy here the first time around and this go round my time hasn't been plentiful but it's ok ... keep in mind if you don't hear from us, no news is good news!) Daddy & Bubba came back into Memphis last night and it sure is good to have them here again!! It's been a LONG week without them!

Emma Grace is doing better now, the first part of the week was not so pleasant for her as the side effects hit. Dr. Santana saw her on Wednesday and her blood sugar was too low at 35 so they put her on fluids 24/7 until this last 5 doses are behind us. She started perking right up while in his office (you know, she is like her Momma...alittle sugar always fixes us! ha) In fact, she had been pretty subdued Wednesday morning and they hooked her up to her "sugar" fluids while Dr. Santana was checking her out. She looked at him and said "Dr. Santana...you're wild!" We cracked up and I commented that I think she's feeling better already! She still has the diarreha but thank the Lord the vomitting has ended since wee hours Wednesday.

Dr. Santana wanted to go ahead with the second part (five more doses) which will finish round #1. (Sunday is our last dose of it..yeehaw!) He did give us some encouraging news as he said he could notice a slight difference in her right arm!!! Thank you Lord!! We need this chemo to do its job and get rid of this nasty stuff!! We just have to keep looking up at Him and take lots of deep breaths reminding ourselves this miracle is still in the works!! We are going back to see Dr. Santana on Monday morn and hopefully, we will get to come home for a break in between these rounds of chemo. (ok...we've got a BIG praise in there for the change in her arm already and a prayer request as well...HOME-HOME for a breather..hint, hint! ha)

Last weekend God blessed us with safe travels to Springfield, MO for the big event of Josh Turner, Brooks & Dunn and Joe Nichols concert. We got to meet Mr. Turner and had a double blessing of getting to meet Joe Nichols as well. He's a NW Arkansas boy, you know. The kids were pretty excited getting autographs and pictures taken with these great folks and they were SO SO nice! The concert was fabulous ... Emma Grace was dancing in the aisle, shakin her biscuts and swingin her arms and SINGING of course! It was great!! She made it thru her man, Josh, singing, thru Joe Nichols and half way thru Brooks & Dunn. Then she decided it was time to nap!! We could not believe she was sleeping thru all the loud music. Brooks & Dunn certainly put on a show!! Needless to say, a good time was had by all!!

We came back to the Grizzlies House late Sat afternoon, gathered our stuff and headed to Cleveland, MS to see Sarah Claire and family. Daddy & Bubba left after church and even made it home in time for our church at home that evening. (I'm not sure I want to know how fast the big red truck was going to pull that off!!!) Emma Grace & I had the wonderful blessing of seeing our Sarah Claire, Mom Monica, Mimi Sharyn, Tucker, Hayes, Bill & Patty Avritt and many more for more than just an overnite stay. Hey, we even got to go to the Mud Derby on Sunday afternoon. Mimi Sharyn's son, Chris, races in the Mud Derby and we had a great time. Now, I've been to 18 county fairs and 8 goat ropins' but I'd never been to a Mud Derby!!! They race two pickups at a time in a horseshoe track (in the mud, DUH!) and the fastest truck wins. It's kinda like the roundy-rounder races as the driver strategy and tactics come into play as well. It was a B-E-A-UUUUUUUUU-T-ful afternoon and we had a blast. Plus had my first batch of boiled crawfish!! Now...that's just not you're everyday events in NW Arkansas, eh??

The visit in Cleveland, MS was therapeutic for all ... time just seems to pass too quickly and before we knew it, it was time to head back to Memphis on Tuesday. Mimi Sharyn was our gracious taxi service. I teased Monica by calling them "H & H Transportation" (Hays & Holder...ha!) Sharyn stayed the night with Emma Grace & I at the Grizzlies House and we were so glad. We met up with Bailey & Kelly King who was here for treatment for two days and had dinner with John Beckstead, Jennifer & Anna Clint - who were here for tests this week. All clear by the way! Spencer is still in LaBonheur Hospital since his surgery and is in & out of ICU. Please remember Mr. Spencer in your prayers as well as our many, many other St Jude siblings. Carol & Tori made it here on Thursday and we had a grand visit with them! It was sure nice getting to see so many that we lived with at Ronald's house. Once St Jude family, always St Jude family.

We want to say a special thanks to the folks back home who put together a benefit for our family at Ox's Shamrock last Saturday. You cannot know how your generosity, hard work and love mean to us. God surely has blessed our family with caring folks who are so willing to help when needed. Thank you all from the bottom of our hearts!!

Well, we want to wish everyone a very Blessed Easter. We were in hopes of being home-home but this is where we need to be for our baby girl. God has given us such wonderful friends/families in Christ while at St Jude and we're getting to worship with Ashley Garrett & family tomorrow and then going to lunch & egg hunt with Maci Morgan & family after church. God certainly provides, doesn't He??Emma Grace has a full schedule on Easter Sunday! Daddy & Bubba will be headed home later in the afternoon but we're not talking about that right now. We love you all and thank you as always for holding such special places in our hearts for your love & friendship! Thank you also for your continued prayers for His ultimate healing on our Emma Grace. May His love & blessings cover & cradle you during this time of celebration of our Risen Saviour!! Keep your eyes on Eternity!!

Only By His Grace - Miss Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Friday, April 2, 2004 7:22 AM CST

Blessed Day to All!

Well...this is going to be short-n-sweet (maybe.ha!). Emma Grace is doing great with her first two days of irinotecan. She had two long days of hourly lab draws that determines how her body is absorbing the new chemo and now she is just taking the chemo in the morning, oral liquid suspension and chasing it with Cranberry-Grape. How in the world did they figure out that was the combo?!?!? Amazing, just amazing. Her only side effect so far has been one episode of diarreha. (Pray that will be it.) She will take the chemo once daily until Sunday then has two days of rest then will start the next dose Wed-Sun again. That will be the end of round #1. So far..so good. God is protecting our baby, ain't He awesome?

Daddy & Bubba made it in last night and talk about a JOYOUS little girl to see them pull up!!! I think we all were equally excited. Daddy is donating platelets this morning and as soon as he's unhooked we are headed to Springfield, MO to go to the big event ... Emma Grace is going to get to meet her FAVORITE buddy, Josh Turner, who sings "Long Black Train". We all have backstage passes and are thrilled that God has worked it out for her to get to be there. You know He has many tools to make special things happen ... Thanks KIX 104 for being His tools!! Josh is touring with Joe Nichols and Brooks and Dunn and we get to meet Josh and see the concert this evening. It will be a HUGE day not only for Emma Grace but Bubba as well. He has literally been bouncing off the walls in great anticipation!! Emma Grace learned just yesterday of what was in store and her excitement is building as we speak!! HAHA

It has been quite the rollercoaster for the past two weeks but God has lifted us with His mercies and grace to carry us thru just one day at a time. That's all we have you know and we are so grateful He has this all figured out. He knows we would have it messed up. When we started back in Oct 2002, we commented that we felt as He was driving the bus and we were just buckling our seatbelts to hang on tight for the journey He is leading us through. This time around it seems we have had to get out our military issue of gear as God is now piloting the tank as we are going into battle. This continued journey has gained more intensity in the "battle of the beast" and we are not willing to sit idly by without a fight. Ephesians 6:11 says that we are to "Put on the WHOLE (my emphasis) armor of God, that you may be able to stand against the wiles (tricks, my paraphrase) of the devil." The fight of disease against Emma Grace's body is not only physical but spiritual warfare. The devil is trying his best to tear down what God is doing thru this journey and we're not willing to let that happen. God is victorious ... PERIOD!! It's just like Emma Grace's favorite song says in the chorus of "Long Black Train" ... "there's VICTORY in the Lord I say, VICTORY in the Lord...cling to Father and His Holy Name and don't go riding on that long black train!!"

We love you and again you cannot know what a comfort it is to us to know that you are pleading on our behalf of this battle. God has blessed us with the Best of the BEST and we thank Him daily for sending us you. We are CERTAIN that we do not begin to know a fraction of the support and prayers that go on for Emma Grace but we just pray that God fills your crowns heavy for your loving kindness. May today and everyday be filled with God's many blessings and know that we love you more than words can say!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Friday, March 26, 2004 11:57 PM CST

Hello Dear Family & Friends,

The night is getting later as I keep put off posting this entry. The past two days have been even longer and I sit here trying to place in my mind what I want to say and how ... the words just don't seem to flow.

We came back from St Jude this evening with news we had prayed we wouldn't have to share. No other way to say it except that the MIBG shows the cancer is back. The obvious place in her right arm that she just started having problems with since Sunday, March 14th. She also has tumors in one knee, the lower femur in the other leg, both hips, a couple of spots on her spine and the nasty beast has returned in her bone marrow once again. UUUGGGHHH!!! So quick!! December scans were crystal clear and how quickly things can change .... three months later, there it is. Upset & furious it has reared its violent & vicious head again, heartbroken to know she's been through so much and now again?!?!? We knew, we just knew that Sunday when she had trouble with raising her arm something it just didn't feel "right". You know that sickening feel in the pit of your stomach that you cover with prayer and ignore hoping it will go away. In quoting our dear St Jude mom, Chris (who quoted St Jude mom, Sylvia) "we are all just one bad scan away from being right back". Cancer certainly has no respect for age or gender as we all know. Emma Grace figured out that her cancer was probably back last week as she explained "that's why I didn't get my lines out". She knows far more that a 3 1/2 yr old should about cancer. It's been her way of life that I pray one way will be only a distant memory for her with complete healing.

Now...the game plan is back to St Jude Tuesday, Mar 30th start a different chemo (Irinotecan) on Wed the 31st. Dr. Santana says using a different chemo that "the beast" (my words, not his) hasn't seen before in hope of getting the tumors to respond and let's get her clean again. That's Step One which we are going to try for 2-3 months equal to 2-3 rounds. We are going to re-assess after round 2. And when I say we're "going to try for 2-3 mos" means nothing more than how she will be able to tolerate the new chemo. It is a Phase I study and we are praying for tolerance and results. Step Two could possibly mean going to Philadelphia for a treatment called MIBG. Same radioactive material as used in the scan that we just did this week but this is performed as a treatment. I'm sure Dr. Santana explained more detail than I just did but my recall system is a bit on the blur right now, so please forgive me. When that time comes closer, you know I'll relay more. He has always told us since day one at St. Jude that he won't give us more info than we need, until we need it. So basically, first plan of attack is chemo.
Target prayer: the chemo is tolerated well by Emma Grace, does what it's supposed to and the tumors respond and retreat.

Do you get the feeling by my descriptive verbiage (as I sit here and re-read my previous) that we are at battle?!?!? Well, that's exactly how we feel. To know that her initial treatment was aggressive to say the least and this vile enemy lay in wait to attack again. Our dear friend, Wendy, from the Transplant team - who by the way has been fighting her own battle of cancer for 7 yrs AND still working daily at St Jude - stated very plainly today before we left, "I would love to be put out of a job one day" meaning the cure had been found and no one would have to battle "the beast" again. Dr. Santana told us that there are still things they can do and we thank God for that, the prognosis has obviously changed dramatically from initial diagnosis / prognosis. Let me just say this ... THOSE ARE ONLY NUMBERS. And God has brought us too far to concentrate on less-than-favorable numbers, besides, negatives are not our focus. Have you ever heard the analogy that when two negatives are placed together what happens?? A positive, right? And that positive is purposely translated to a "(plus symbol)"...do you see the Cross in there?? That's right, He's right there and He knows all about this. It's just like Bro. Chris stated at my sweet sister's funeral service "nothing can shadow the Cross". Nothing...there's no unmistakable margin. Jesus made sure of that.

We know that God has placed us in His "best of the best" doctor's hands to address this set back. He knows, He cares, His grace is sufficient and He loves us far beyond our understanding. Our dear St Jude mom, Donna, reminded me on the phone just yesterday "God is able". PERIOD! We have no idea what's in store or what the plan is but I can claim this ... God does.

Thank you for allowing me to vent as you know Daddys & Mommas are so very human especially when it comes to our babies. God said to make our requests known and we are faithfully trusting and believing Him to lead the way. He knows ... we certainly don't. We love you more than you can know, we are so grateful for your continued prayers for our Emma Grace as well as our St Jude families who continue to fight daily to win their battles. Barney shared with me on Wednesday night while we were awaiting word in Memphis "her healing will be in God's way, God's timing and God's place". Please pray for the battle ahead to be armored with His strength, His mercy, His grace and most of all, covered in His love. Thank you again for always being such faithful family and friends who we thank God daily for your being such a blessing!

Only By His Grace - Emma Grace, Eli, Barney & Trish

Emma Grace's new book "My Promise Rainbow ... And the story of Noah's Ark" given to her by our dear Aunt Judy has several flaps and on each page is a bible verse. The story is symbolic of our daily storms as well as sharing the story of Noah & the ark. The purple page reads:
"Purple is for the
Storm that grew
In scary clouds and
Wind that blew.
But God remembered Noah, who
He gave this special promise to:
A storm is coming
But I'll be with you.
I'll keep you safe.
My promise is true."

The verse under the purple flap reads:
"God said, 'Don't be afraid. I am with you'." Isaiah 43:5

Tuesday, March 23, 2004 11:32 PM CST

**ADDITIONAL TESTS & SCANS WEDNESDAY 9AM, THURSDAY 7AM AND POSSIBLY FRIDAY TO IDENTIFY EMMA GRACE'S "HOT SPOTS". THANKS FOR YOUR ADD'L PRAYERS DURING THIS TIME!! Love to All! The Hampton's

Hello Family & Friends,

We have just returned from St. Jude this evening with our hearts overloaded with heaviness and our minds a blur ... Emma Grace's bone scan came back with "hot spots" on her right arm. Dr. Santana is very concerned as this scan shows "very suspicious areas" and at this point we are not sure exactly what the problem is. He is bringing her back next week for a different type of bone scan, MIBG, a bone marrow biopsy and possibly a bone biopsy of her right arm. Nothing can be specifically determined until we know exactly what we're looking at in terms of the "hot spots". Our prayer is when they do the tests next week that God has removed the culprit and the treatment would be nothing. It's all in His Hands and I have said over and over and over again, God doesn't make mistakes...He has this all under control. Our faith is in His healing powers and as Mommas and Daddys we are obviously shaken, scared to death and upset by the news not being as we had hoped. Daddy kept reminding me on the longest trip home ever to "Keep Looking Up ... it's all in His Hands". God's the Ultimate Healer for us all.

Emma Grace woke up Sunday morning to not being able to lift her right arm fully without being in pain. We contacted our pediatricians, Dr. Muriel & Dr. Perez, who felt the best thing would be to immobilize her arm and take her to St. Jude as we were already scheduled for follow-up scans.
We are so thankful that no matter what time of day or night, those dear Doctors/friends are only a phone call away and are praying and worrying right along with us.

Obviously, God had a message prepared in advance for Momma & Daddy today as He gave me in last week's entry. I've copied and pasted that paragraph again as today, especially, today it's a reminder that God's Glory is to be given no matter what we face in our day to day worlds here on this earth. Please pray for God's Glory to rise above all. Please pray for the strength, comfort and courage for us to face whatever He has for us ahead and most of all, to wrap those Loving Arms of Peace, Security, Mercy and Grace around our precious little girl.

"This is the day that the Lord has made...let's rejoice and be glad in it." Psalms 118:24 Have you ever thought just like I have when I'm having just ONE OF THOSE REALLY ROTTEN DAYS when nothing seems to go as planned - the kids fuss like you've never heard before, the money just doesn't stretch as far as it was supposed to, our hearts our broken of the wars, sickness and death around us and I try to pray, "Lord, this is a really rough, yucky day, how in the world can I rejoice??" Sometimes it's so hard to pray but He still wants us to rejoice. I have to constantly remind myself of that - no matter what's going on in my life. I'm reading the latest book by Max Lucado (you know, one of my VERY favorite Christian writers) called "It's not about Me". Mr. Lucado writes "Your pain has a purpose. Your problems, your struggles, heartaches, and hassles cooperate toward one end - The Glory of God". Whew! Hang on, keep the faith bucket full and praying always God's telling me as He's got it all worked out for His purpose, His Glory. It's too easy to let the distractions of my everyday life get in the way of what's really important, God's Glory even when I feel my "Glory & Praise Functions" are on the blink.

Please continue to pray for the following St. Jude families and our friends and families of home. If anyone has any recent updates, please let me know as I have not been able to touch base with some of these folks the past weekend. We love you and you cannot know what a comfort it is to know our friends, family, the "Prayer Warriors" are on call beckoning His Throne for mercy and grace. May God bless you always for being such a blessing to us and so many!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PRAISE and PRAYERS ANSWERED!!
Sarah Starks - SCANS CLEAR!!! Vicki's email headlined "Prayers for Sarah Worked!" They were recently given their first prognosis of 10s they had never been able to give even that much before. Sarah & Mom Vicki told their St. Jude doctor their "faith was in God ... we know an awesome God and He is the Great Physician."

Lindsay Drue - local sweetheart in Rogers that has leukemia and will soon complete her 3 yr treatment!!

PRAYER REQUESTS:

Lauren Collins - At St. Jude this week doing follow-up scans. Please pray for the "all Clear!"

Dustan Heaton - relapsed, starting new treatment and will be sent to Texas for the research study they have agreed to.

Spencer Beckstead - He is back into ICU as complications of increased heart rate and respirations are present. Still in LaBonheur in Memphis. He recently had a first-of-the-kind ever surgery on his brain. His tumor was growing at a rapid pace and they were finally able to remove ALL of the tumor. Spencer had a stroke during surgery which has affected his speech and his right side. He will require extensive rehab but the tumor is finally gone!

Rawan Et'Twail Family - Please remember her family as Miss Rawan went home to be with our Lord Friday, March 12th. Truly God has received a precious angel that we loved so and will certainly be missed.

Bailey King - our dear little friend in Destin, FL. They did an MRI last week and the steriods required for her treatment have caused complications with AVN in her hips, knees, and ankles. She is now having to use wrist crutches on a regular basis as she is experiencing quite a bit of pain. They will be meeting with the bone specialist on their next trip to St. Jude for further evaluations.

Danny Dolnick - also still struggling to hang on. Last email from his mom, Ellyn, said he was still making it.

Sarah Claire - Continues her extensive rehab which is long term but she is growing and changing daily. Another miracle from God.

Zoe Jo - returning to St Jude March 21st for scans. Still signs of cancer present from last visit.

Zoie Schexnayder - returning to St Jude Mar 22 for a week of scans and re-evals. Still small showing signs of cancer and may need another transplant.

Billy Ray & Joann Maxwell - my dear great aunt & uncle. Joann had her second bypass surgery on Mar 9th is doing well. On Mar 10th, Billy Ray had two stents placed as they felt he had a heart attack. Billy Ray was released on Friday and Joann is having complications of fluid buildup. Last word I had on Sunday was they were trying to get this under control before they could consider her release to go home. These dear folks surely need our prayers for a healthy recovery.

Jean Marthy - aunt of friend, D'Ann in Hot Springs. Jean possibly has lung cancer. They are waiting for results and called Wednesday asking for our "prayer warriors" to lift their family in prayer.

Willene Washington - Vicki Bailey's mom, dear family in Christ at our church, recently diagnosed with 1st stage of breast cancer. Had surgery to remove the tumor which was localized and lymph nodes shows NO SIGNS of spreading!! Hallelujah!! Mrs. Willene will have 6 wks of radiation, 5 days a week.

Doyle Barnes - a brother in Christ at our church - diagnosed with prostate cancer. Had the radioactive implants done last week and has had numerous complications.

Bill, Patty & Les Avritt - Les is daily struggling with the battle of addiction. Staying straight is a minute to minute battle - not day to day. Please remember Les' dear Momma & Daddy for strength to help Les.

All our friends and family that are lost and need Jesus in their lives. He didn't just give us some...He gave His all!

We are so thankful God has blessed Mel Gibson's "The Passion of Christ". Mr. Gibson met opposition from the beginning of this incredible, breathtaking, heartbreaking movie. Satan did not want this movie released or to be met with the amazing support it has received. You think he (satan)is seeing the plot is thickening and he is losing ground?? That's right ... Way to go Mr. Gibson for your heartfelt conviction of your desire to share the Gospel but most of all, Share Jesus!!

Please continue to remember our St Jude families who have had to let their sweet angels go Home...The Overly's, The Brewer's, The Currier's, The Kistner's, The Lowe's, The Dison's, The Mills' ... this is just to name a few. And the other St Jude families that are still in treatment, that have finished with treatment and in remission and the many dedicated folks of St. Jude who continue their mission of treating and researching for the cure, not only for the children but the adults that benefit from the research discovered daily.

We love you and May God continue to bless you for your faithful heart!!

Friday, March 12, 2004 6:28 AM CST

Good Day to our Dear Family & Friends!

"This is the day that the Lord has made...let's rejoice and be glad in it." Psalms 118:24 Have you ever thought just like I have when I'm having just ONE OF THOSE REALLY ROTTEN DAYS when nothing seems to go as planned - the kids fuss like you've never heard before, the money just doesn't stretch as far as it was supposed to, our hearts our broken of the wars, sickness and death around us and I try to pray, "Lord, this is a really rough, yucky day, how in the world can I rejoice??" Sometimes it's so hard to pray but He still wants us to rejoice. I have to constantly remind myself of that - no matter what's going on in my life. I'm reading the latest book by Max Lucado (you know, one of my VERY favorite Christian writers) called "It's not about Me". Mr. Lucado writes "Your pain has a purpose. Your problems, your struggles, heartaches, and hassles cooperate toward one end - The Glory of God". Whew! Hang on, keep the faith bucket full and praying always God's telling me as He's got it all worked out for His purpose, His Glory. It's too easy to let the distractions of my everyday life get in the way of what's really important, God's Glory even when I feel my "Glory & Praise Functions" are on the blink.

Emma Grace is doing well...we're headed back to St. Jude on Sunday with another rounds of scans, xrays, bone marrow biopsy, you know "the works" on the 15th & 16th. As Emma Grace will tell you, "If Dr. Santana says my scans are still clwear...I get Bertha & WLeonard out and I can get in the bathtub on my BELLY and splash, Splash, SPLASH!!"
Big Prayer Requests for those scans to remain clear and we are trusting that "Bertha and Leonard" (her central lines) will ride back from St. Jude in a ziploc!!! She's had them since Oct 15, 2002 and they've been such a vital part of her life and such a part of her. It's strangely emotional that they can really be out soon.

We are coming to our dear family & friends for prayers for many of our St. Jude family, our family and friends who have requested your power of prayer. So...I'll make the following list with brief notes. You can never know how much we love and thank God for you being such a blessing to our lives. Most of all, the comfort we have in knowing we can lean on our friends in times of need, in times of praise and especially those times our hearts get so burdened ... the words just don't come. We see God's light in through you, thank you.

PRAISE and PRAYERS ANSWERED!!
Sarah Starks - SCANS CLEAR!!! Vicki's email headlined "Prayers for Sarah Worked!" They were recently given their first prognosis of 10s they had never been able to give even that much before. Sarah & Mom Vicki told their St. Jude doctor their "faith was in God ... we know an awesome God and He is the Great Physician."

Lindsay Drue - local sweetheart in Rogers that has leukemia and will soon complete her 3 yr treatment!!

PRAYER REQUESTS:

Dustan Heaton - relapsed, starting new treatment and will be sent to Texas for the research study they have agreed to.

Spencer Beckstead - Recently had a first-of-the-kind ever surgery on his brain. His tumor was growing at a rapid pace and they were finally able to remove ALL of the tumor. Spencer had a stroke during surgery which has affected his speech and his right side. He will require extensive rehab but the tumor is finally gone!

Rawan Et'Twail - still gracefully hanging on, hoping for a cure. Her body is weak but her mind is strong and her faith is keeping her going!

Danny Dolnick - also still struggling to hang on. Last email from his mom, Ellyn, said he was still making it.

Sarah Claire - Continues her extensive rehab which is long term but she is growing and changing daily. Another miracle from God.

Zoe Jo - returning to St Jude March 21st for scans. Still signs of cancer present from last visit.

Zoie Schexnayder - returning to St Jude Mar 22 for a week of scans and re-evals. Still small showing signs of cancer and may need another transplant.

Billy Ray & Joann Maxwell - my dear great aunt & uncle. Joann had her second bypass surgery on Mar 9th is doing well. On Mar 10th, Billy Ray had two stents placed as they felt he had a heart attack. He is still in the hospital with a sinus infection and possibly pneumonia. Joann is four doors down from in a regular room now. She can only go to the door as they are afraid of her catching anything since she just had open heart surgery. These dear folks surely need our prayers for a healthy recovery.

Jean Marthy - aunt of friend, D'Ann in Hot Springs. Jean possibly has lung cancer. They are waiting for results and called Wednesday asking for our "prayer warriors" to lift their family in prayer.

Willene Washington - Vicki Bailey's mom, dear family in Christ at our church, recently diagnosed with 1st stage of breast cancer. Had surgery to remove the tumor which was localized and lymph nodes shows NO SIGNS of spreading!! Hallelujah!! Mrs. Willene will have 6 wks of radiation, 5 days a week.

Doyle Barnes - a brother in Christ at our church - diagnosed with prostate cancer. Had the radioactive implants done last week and has had numerous complications.

Bill, Patty & Les Avritt - Les is daily struggling with the battle of addiction. Staying straight is a minute to minute battle - not day to day. Please remember Les' dear Momma & Daddy for strength to help Les.

All our friends and family that are lost and need Jesus in their lives. He didn't just give us some...He gave His all!

We are so thankful God has blessed Mel Gibson's "The Passion of Christ". Mr. Gibson met opposition from the beginning of this incredible, breathtaking, heartbreaking movie. Satan did not want this movie released or to be met with the amazing support it has received. You think he (satan)is seeing the plot is thickening and he is losing ground?? That's right ... Way to go Mr. Gibson for your heartfelt conviction of your desire to share the Gospel but most of all, Share Jesus!!

Please continue to remember our St Jude families who have had to let their sweet angels go Home...The Overly's, The Brewer's, The Currier's, The Kistner's, The Lowe's, The Dison's, The Mills' ... this is just to name a few. And the other St Jude families that are still in treatment, that have finished with treatment and in remission and the many dedicated folks of St. Jude who continue their mission of treating and researching for the cure, not only for the children but the adults that benefit from the research discovered daily.

We love you and May God continue to bless you for your faithful heart!!

Monday, February 23, 2004 5:33 AM CST

DON'T MISS SEEING MEL GIBSON'S "THE PASSION OF CHRIST" OPENING AT THEATRES FEB 25TH!!!!!!

February Greetings Everyone!! ***NEW PIX POSTED!!!!!

Wow! Has it really been a MONTH since we updated?!?!? I could use the excuse that my turning 40 in January has caused this inability to keep up with time but of course, that’s only an excuse. Besides, time seems to slip by no matter what the case or excuse may be. ha! (Thanks Chris for the not-so-subtle reminder that I'm slipping!! ha)

First of all...we want to thank you, thank you, THANK YOU from the bottom of our hearts for your support of the St. Jude Radio-A-Thon held by KIX 104 Feb 12th & 13th!! They raised over $84,000 this year which was a new record for NW Arkansas and we just can’t say thank you enough for your compassionate support for Emma Grace and our many, many friends of St. Jude. We truly know how well these dollars are spent and are vital for the continued research that must go on for the cure that is hopefully, not far down
the road.

Emma Grace was able to present KIX 104 with a collection of donations for “my St. Jude” as she refers to them in the incredible amount of $10,532.40!!! That number is still staggering to us and just blows our minds at God's awesome goodness of sharing so many folks with our baby girl and her St. Jude siblings! When starting this - 16 days prior to the radio-a-thon - we were in hopes of collecting $2,000-$2,500 and God supplied 4 times what we were asking! Thank you Lord for the amazing compassion of so many families and friends spreading from Fremont, NE, Guthrie, OK all the way to Roswell, GA!!!

We just returned last night from Winona, MS for the grand wedding of our dear Nurse Ashley and Dr. Stephen Bauch and Cleveland, MS from getting to visit with Miss Sarah Claire, Mom Monica and Mimi Sharyn. Emma Grace was one of the flower girls for Ashley & Stephen’s wedding which was absolutely gorgeous! Miss Darbie, another 3 yr old darling, was the other little flower girl. Talk about brave folks having two 3 yr olds in a wedding! ha! They both did just great ... neither dropped the rose petals as planned and neither stayed with the wedding party during the ceremony but none the less, were just adorable. Darbie & Emma Grace made buddies by the time of the rehearsal dinner and made it just fine. Both would rather “sit in the wings” during the actual wedding though!! Emma Grace spotted Nurses Sarah, Kristy and Macy which meant Bubba, Mom & Dad got dumped and she sat with them quietly (surprise, surprise) during the wedding. It was a treasured occasion that we wouldn’t have missed for the world and we so thankful and honored that Ashley and Stephen wanted our little Emma Grace to be part of this memorable event.

After the ceremony, we loaded the big red truck for Cleveland, MS which was only 1 1/1 hrs away. We were so thrilled to get to spend time, though short time, but time none the less, with our dear Sarah Claire, Monica, Sharyn and family. The kids we so excited to get to see each other again especially, Emma Grace and Sarah Claire. Emma Grace just kept showering Sarah Claire with kisses, kisses, kisses. She had lots of catching up to do!! God blessed us with this dear family the second day that we were at St. Jude and it was one of those unions that you occasionally have with certain people who you feel like you have known a lifetime.

We were so thankful to worship with them Sunday morning and got to see the wonderful folks again at Morrison Chapel Baptist Church. You all may remember in past entries about the family that we met and had asked prayer for, Bill & Patty Avritt, who have a son, Les, that was, and praise God I said “was”, living on the streets of Atlanta with a serious drug addiction. I know we have told this story before but it is certainly worth repeating as we were so blessed in getting to meet Les on Sunday.

When we were in worship with them June 29, 2003, Emma Grace was in radiation treatment. She stuck close to Mimi Sharyn that Sunday and went to the choir room prior to the morning worship service. There she found Bill and two other gentlemen who were warming up for a trio special they were doing that morning. Unbeknown to anyone present, Bill had been up the entire night praying and pleading with God on behalf of Les, who was on the streets with drugs taking over. During the night (and early morning hours) Bill asked God for a miracle as He knew that was what it would take to get Les back home and off drugs. Bill later stated he had never asked God for a miracle before in his previous and numerous prayers for Less. Bill also asked God to show him a sign. Later that morning in the busy choir room walked this little bald angel, standing without saying a word. Bill said she just looked up at him with those big, blue eyes and God touched his heart saying, “Bill, look here ... this in one of My miracles.” Bill had no idea who this child was until he asked Mimi Sharyn. All he knew was this was God’s way of speaking to his heart letting Bill know that He was there, hearing his prayers and how real our God is!! This story brings me to tears every time I share it as we never know how God is going to use us to speak to someone. And to use our baby in such a marvelous and yes, miraculous way to let Him speak through her presence. She had never met Bill prior to that morning but God drew her to Bill as that was God’s plan. Ok...it gets better... Well, that was on June 29, 2003. On June 30, 2003, Bill & Patty receive a phone call from Les. He wanted to come home and has been home every since. He has truly faced his problems of addiction and started going to church with Bill and Patty. His struggles are on a day to day basis but we know that God is in full control to strengthen when our weaknesses try to take control. The devil just doesn’t like to give up when he has someone so wrapped up and doing things his way. But thank God, He is greater and has already won the final war. We just have to work at our daily battles to keep Satan at bay, rebuking his
temptations that he so cleverly places in our path to make us stumble. And by the way ... Les accepted Christ this past fall!! Hallelujah!! How about that Satan? That’s one you’ve lost forever.

We had lunch with Bill, Patty, Les, Monica, Roger, Hays, Tucker, Miss Sarah Claire, Mimi Sharyn, Curtis, and of course, Miss Emma Grace, Eli, Daddy and me. The food was wonderful but the fellowship fed us far beyond what the meal ever could! “Mr. Bill” as Emma Grace refers to him had a very special gift for her during lunch. In it was a small white box with a big pink bow and the touching card read, “Thank God for miracles. Emma you are very special to all of us. May God always keep you close and bless you with all things good. The Avritt’s - Bill, Patty & Les”. The box held a tiny necklace with a cross which is a precious reminder of our God’s mighty love and ultimate sacrifice He made giving His Son for our hope of eternal life. Needless to say, joyful tears could not be held back as The Avritt’s gave Emma Grace a reminder of how God used our baby girl in a quiet, yet powerful way that Sunday morning on June 29, 2003. The gift is certainly a treasure but the friendships that God blessed us with in this dear family are the spiritual treasures that not only last a lifetime but go with us for eternity.

There is a remarkable link to St Jude’s website which is very informative concerning solid tumors. We learned last week that Emma Grace as well as several of our St. Jude siblings & parents are shown in this message about solid tumors. Once you have seen the clip that appears when you open this link, there is a menu to the left that highlights “Neuroblastoma - Jack’s Story”. We met this wonderful boy, Jack and Mom, Beth, in Feb 2003 through our dear friends, Marci & Karina. They have been such an inspiration to us as their battle with neuroblastoma has been over three years. The Discovery Channel did a remarkable story about Jack which is featured in these clips of “Jack’s Story” back when he was 2 yrs old. It takes a little while to view but is very informative and interesting, especially when you know this precious child. This is link you can copy and paste to the address bar to get to this site. http://www.stjude.org/solid-tumor-parents/0,3898,835_4604_9977,00.html

We ask that you remember the Avritt’s, especially Les, as he fights his daily battle. Also, our many St Jude friends who continue with their battles of cancer and those dear families who have given their angels back to God.

Sarah Starks - having scans @ St Jude this week.
Rawan Et’Twail - bravely struggling to hang on.
Danny Dolnik - bravely struggling to hang on.
Dustan Heaton - results of scans on the 24th that were taken last week.
Zoie Schexnayder - retesting 3rd week in March, possibly another transplant.
Zoe Jo in Illinois - still showing signs of active neuroblastoma cells.
Vicki Bailey - sister in Christ, recovering from pneumonia & recent tests of lymph nodes NEGATIVE!! HALLELUJAH!!
Karen Johnson - sister in Christ, recovering at home from surgery.
Audie Ramsey - little man in our church, 18 months old, recovering from pneumonia.

Our hearts continue to be overjoyed and overwhelmed at God’s mercy, grace and most of all, His love. Not only does He take care of the huge battles in our lives but He takes time to handle the smallest of details as well. Nothing is too big or too small for our Lord. We pray all is going well for you and continue always to thank God for His blessings of friendship He has given us with you. May God bless and keep you today and always. Thank you for being such a precious part of our lives!!

Only By His Grace - Emma Grace, Eli, Barney & Trish

Psalms 29:4 & 11 "The voice of the Lord is powerful; the voice of the Lord is full of majesty. The Lord will give strength unto his people; the Lord will bless his people with peace."

Monday, January 27, 2004 12:27 AM CST

JAN 29TH UPDATE: MISS MCKENZIE GAINED HER TRUE ANGEL WINGS ON JAN 29, 2004 AT 5:05PM EST. PLEASE PRAY FOR HER DEAR FAMILY ... THEY HAVE TOUCHED SO MANY LIVES. Service info: www.caringbridge.org/wv/mckenzie

**New Pix in Emma Grace's Album!!**

Greetings Everyone!! (Grab a cup of coffee ... this could take a minute or two ...)

Well...as our dear St Jude mom, Sonya would say "it's colder than a frog's belly" in NW Arkansas tonight!! It started snowing this afternoon and Emma Grace is thrilled!! And Bubba Eli is even more excited to hear school is out tomorrow!! It's not supposed to amount to much but just enough to get everyone keyed up to see the snow.

First of all, we have some very special prayer requests. Miss McKenzie Brewer & Miss Rawan Et'twail - both still hanging tough like the incredible troopers they are; Mr. Danny Dolnick, 2 y/o who was sent home last Thursday as his tumor has tripled even in the midst of treatment. Also, the family of Mrs. Karen Reeder, who was one of our faithful prayer warriors we only knew by a friend of a friend and by her emails. She had been battling breast cancer and passed away last week. I believe she was in her mid-thirties and has left husband and two children, 20 y/o and 15 y/o. Please continue to remember Miss Christal Reynolds from Tampa as she is doing well and recovering from her eye surgery last Wednesday. They are expecting to repeat this surgery in 4-6 months. Also, Mr. Aaron Hunter, fellow neuroblastoma friend who went thru transplant the same time as Emma Grace, has relapsed and started a new phase of chemo. He will need another transplant this time donated by his brother once the chemo is complete. I will list the websites below for your convenience. Note ... Sonya, Miss McKenzie's mom's, entry on Jan 21st will touch your heart. This family is certainly God's light that is ministering to us all even in the midst of their extremely difficult times.

I know it goes without mentioning that all our St Jude friends as well as Emma Grace & family thank you for your continued prayers. That's one thing we can always do to help - pray for each other. God is on His throne taking care of the rest.

I have tried to absorb and regain composure all week long after our very emotional and incredible weekend at Country Cares for St Jude Kids kick-off on the 16th. Giving our story was only a small portion of the emotion ... seeing such an enormous support from the country music industry as a whole was absolutely overwhelming. Everyone came from all over the country - the radio station folks, the St Jude patients who came to share their stories, and last but certainly not least, the country music artists. But everyone was there with one common bond - the children of St Jude. It was absolutely amazing to see the obvious compassion and concern the country music industry has shown for our children, not to mention the financial committment they have for St Jude.

Emma Grace had quite a full day and surprisingly, held out very well for a 3 yr old. Her mission was to see the Ducks at the Peabody and of course, to have fun! We shared our story two different times and then made short but sweet visits to our St Jude buddies, Tori & Aaron, who were on the 2nd floor. It was so good to see them and their family. It doesn't seem that long ago we all lived under one roof at Ronald's house. We slipped back to the Marriott to get Emma Grace a cat-nap in hopes of getting a "recharge" for the rest of the evening. There was a photo session for the numerous radio personalities which Emma Grace decided was all kinds of fun. Of course, The Ducks retire for the day straight up 5pm so we had to witness that great event. Emma Grace was quite amazed they were getting to swim in the fountain. Until then, she had only seen them in their "palace" on the roof. After the Ducks made their way to the elevator, we went back to finish the photos. Then the meeting of the country music artists was quite a treat. Emma Grace will someday realize how special it truly was but she was just too busy having fun. Now, Eli on the other hand was a different story. He knew fully well what was going on and knew the new artists better than Mom & Dad. He was WAY JAZZED!! As excited as we all were to get to meet famous folks, they were all way more excited to meet the children. It was so cool!! Randy Owen, founder of Country Cares, is truly a very genuine and caring man especially where "our kids" are concerned. Emma Grace found her a new friend, Mr. Clay Walker. She was getting to sit on Sherrie` Austin's lap, who was right next to Mr. Walker. He kept playing and teasing Emma Grace until she moved over on him. It was a hoot! Oh but I nearly swallowed my tongue after the photo shoot was over as she was in his arms - once again they were playing, picking and having fun - and the next thing I know Emma Grace has snatched his big, black cowboy hat right off his head!!! GA-GA-GAASSSPPP!!! The apologies immediately flooded my lips as I tried to explain that she doesn't understand just yet the issues men have with their neatly formed hats. Mr. Walker wasn't the least bit concerned about his hat, he was having just as much fun as she was besides he figured out real quick that she's pretty onry! He is such a down to earth, caring soul who through his own adversities of MS (now in remission) has a sincere compassion for "our kids". The whole group of artists were just amazing ... again, for one common mission of supporting St Jude. So, you know that alone stole our hearts. Along with Randy Owen, Clay Walker and Sherrie` Austin, present were Keith Urban, Jimmy Wayne, Colt Prather, Danielle Peck, Blue County, Josh Turner, David Lee Murphy, Jennifer Hanson, Amy Dalley, Deric Ruttan, Billy Currington, Jessi Alexander & Rick Trevino. (Considering the hour of this post ... I'm sure I've left someone out ... sorry but the really sad thing is, Eli had to tell me who most of the new folks were! I think I'm getting old!) Bottom line ... we just had a great, great time and one we'll sure never forget. Oh by the way, Sherrie` Austin presented her first $25,000 check to St Jude at the reception dinner that evening for her first 100,000 CD's sold. We all certainly know first hand how much that's appreciated in the halls of St Jude.

Well, I knew this entry was going to be anything but SHORT and I'm quite sure that there will be several thoughts that I have let slip past me. One thing that stays forever with us and that's our gratefulness and appreciation to have you in our lives. We cannot tell you how you have blessed our lives in so many, many ways ... just knowing you're there means the world to us. God certainly knew our needs without our even asking and we are so thankful for His gentle mercies and for sharing you with us! May He continue to bless you richly for all you do. Thank you for your continued prayers for our St Jude children and their families who are a forever part of our family.

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

www.caringbridge.org/wv/mckenzie
www.caringbridge.org/al/rawan
www.caringbridge.org/il/aarondhunter
http://christalinfo.servemp3.com

Saturday, January 10, 2004 9:31 AM CST

Hello & Blessed New Year to All!!

Just a quick note to let you all know that all is well on the homefront of the Hampton Home!! Emma Grace is doing just great...had a round of the stomach bug that was going around but back to normal being her sweet little feisty self. Bubba Eli is growing by the day now and in the "girl groove". (Oh! I knew this day would surely come!! Breathe Momma, Breathe! ha) They both had a wonderful Christmas and it was so grand to get to be home! We took advantage of the fact that we're home and stayed there the ENTIRE day of Christmas!! It was great...spoiling the kids, letting them romp, stomp and enjoy all their new gifts. The best gift for Daddy & I were to have our family with us, under one roof and the amazing blessing of our baby girl touched by the Hand of God. Who could ask for more?? We ask God for all our St Jude family to be healed...the rest is in His hands.

I'm actually posting to you from St Jude on a Saturday as we are here WITHOUT EMMA GRACE, which is WAY more than WEIRD!! I keep turning to see if she's following on a trike barreling down the halls or being pulled in a wagon. We are thankful she is doing so well not to have to be here ... but nonetheless, it's odd to say the least. Barrett & Gwen Curtsinger, Barney & I planned this trip months back as they really wanted to come donate platelets with us and we turned it into a weekend getaway. Well, they are getting to donate but since I had my unexpected gall bladder surgery on Dec 23rd, I can't donate this close to my surgery date. But that's ok ... I came along for the R & R. We are headed to Tunica this evening and back home on Sunday. Emma Grace & Eli are with Nanna & Poppa and this is the first time we have been away from Emma Grace two nights in a row since diagnosis. So ... dear sweet Nanna is having to take the responsibility of flushing Bertha & Leonard (her central lines). We have a couple of trial runs prior to leaving and Nanna did great. Hopefully, in March Bertha & Leonard will be removed and that will be one more chapter closed in our journey.

Next weekend we will return to St Jude for the "Country Cares for Kids Kickoff" with the DJ's & Radio dignitaries from all over the country, ALSAC, St Jude Staff and St Jude Family. We learned there will also be 19 Country Music Artists there as well which the patients will get to have a photo session as well as a photo session with the different radio stations that will be presented from all over the country. What an honor and something that will be a once in a lifetime event! ALSAC called a couple of months ago to ask if we would come give our story as their hope is in the spirit of the upcoming radio-a-thons, they will take a least one child home in their heart. We are certainly honored to be invited and look forward to sharing what God has done through the Miracle Workers at St Jude. Emma Grace & Eli will return with us for the big event and are WAY jazzed!! Emma Grace doesn't have a clue how truly special this is but one day she will. She's just excited that we're going back to the Peabody to see the DUCKS!! HAHAHA!!!

Please remember McKenzie Brewer & family as she is home being such a trooper (as always)! She hasn't been able to attend school for some time, needs assistance walking and her hearing is gone on the right side. They certainly need our prayer warriors to lift them for the strength and comfort that only our Lord can give. McKenzie and her family have touched so many lives and have taken a very special place in our hearts. God is still on the Throne and I know He is holding McKenzie close to His heart!

Also, we would ask for prayers for Rawan Et'Twail who is also at home. She and McKenzie have the same diagnosis and the prognosis has not been favorable from the start. We know that God can accomplish anything that is in His will and I know that these families as well as the rest of our St Jude families would appreciate your remembering them in your prayers.

We love you all and thank you so much for being such blessings to our lives!! You cannot know what you mean to us and that God has blessed us with family & friends who are there to lean on in the triumphant times as well as the times of sorrow. He's a mighty awesome God who has all our needs handled long before we ever ask. May your New Year be filled with His Blessings!!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

"Walk in Love" Ephesians 2:2

(You can copy and paste these to the address bar if they do not show as links to their websites...)

www.caringbridge.org/wv/mckenzie
www.caringbridge.org/al/rawan

Friday, December 19, 2003 3:02 PM CST

Momma Trish Update: Some of you may have heard that I didn't have enough going on during the holidays so I thought we'd throw alittle more excitement on the plate. I had tests done on Christmas Eve Eve (the 23rd ha) as I had self-diagnosed myself as having a hiatal hernia (spelling?). (You know, us St Jude parents can self-diagnose after spending a year at St Jude ... ha!) Anywhooo ... not only did I have a hiatal hernia but my gall bladder was FULL of stones, LARGE STONES. So needless to say, from tests at 10 am went directly to surgery at 2 pm as evidentally, I was in a mess. Doing good now, just pretty sore. I figure if my little angel can go thru a year of intense cancer treatment, surely I can handle same-day surgery for my gall bladder. God is so very good and once again, His timely is precise. We made it through Christmas just amazingly ... we're so very blessed especially, for our healthy Emma Grace and our many God send friends...you. May your holidays and everydays be filled with His blessings! Love you all and thanks for your prayers.

Happy Holidays,
I hope everyone is doing good. Emma Grace is still not sure about no Doctor visits until March. No lab work and no doctors. (thank you Lord) I was telling her that if her scans are clear again in March, they are going to pull her line. She looked up at me and all she could say was does that mean I get to play on my tummy in the bath tub. She was so excited. Little things we take for granted, mean so much to these special kids.
We are sending very special prayers for Peace and Comfort,through this Holiday season for all of our ST. Jude family that has had to share there LOVED ONE with JESUS this year. Brendle's momma said it best."BRENDLE gets to celebrate Jesus's birthday with him in Heaven this year." What an awesome thought that is!
Be sure to remember all of the children of ST. JUDE in your prayers. Also remember the doctors and nurses that are sacrificing there family time to take care of our kids. We never seem to say thank you enough.
Say and extra prayer for McKenzie and her family, They sure need alot of folded hands and bent knees holding them up.
Rawan recieved news that her tumor is growing again. New meds again. They sure need our support. Her web site caringbridge.org/al/rawan

ONLY BY HIS GRACE; Emma Grace, Bubba Eli, Trish, & Barney

Tuesday, December 2, 2003 10:49 PM CST

QUICK ST JUDE UPDATE!!!! We just returned from St Jude this evening and we just want you to know the word on Miss Emma Grace is ALL SCANS CLEAR!!! Thank You Lord!! Ain't He Awesome?? (Will follow with the rest of details later...love ya'll!)

Hello Crew and A Blessed Thanksgiving to All!!

Just an updating note to everyone (as I would hate to be letting another month roll by with no update...smile).

Emma Grace is on her LAST, yes FINAL dose of oral chemo, Accutane. WHOO WHOO!!! YIPPEEEEE!!! (Just pray with us the "Aggressive Accutane Attitude" goes away soon after the pills are finished. Combine those meds with a typical, vibrant 3 yr old attitude and boy howdy! Ok...I think you get the picture.) Anyway, we went back to St Jude for an appointment with Dr. Santana on Nov 10th and all is well. We received our last refill, ran into St Jude friends which we have missed and made our rounds on the 2nd floor to see those dear nurses who stole our hearts. Of course, schedules don't allow us to see all of them but between Sunday night and Monday we got to hug some special necks! And you know, if I start mentioning names, well, then I'm in all kinds of trouble for leaving someone out. So, I have chose to take that stress off of me during this entry. It still seems odd going back just for brief periods ... granted, I am not complaining by any means, we are so thankful that God has brought Emma Grace to the point of only needing these short visits. We just seem a bit empty not seeing our St Jude families that we were accustomed seeing on a daily basis. Thankfully, there are those who have completed treatments and are on the same "brief" returns as Emma Grace. There are those who are still in treatment but our schedules just don't seem to coincide at the Jude. Those that have completed their treatment who stay in our prayers for complete healing. Then there are the families which are forever in our hearts and always in our prayers that brought their angels to St Jude who are now in the eternal presence of God, our Father. Those families, my friend, are missed in a way that I can't even describe. They have paid an incredible price that is uncomprehendable. While forever leaving their mark on our hearts with their love, bravery and strength which only comes from God who cradled their children Home.

Another St Jude angel was called Home last week ... little Bailey Kistner, 6 yr old from Waverly, KS. She had a brain tumor, Ependymomablastoma, which relapsed this past October. Please pray for her family for strength, comfort and guidance in their days ahead without Bailey. They are fellow Christians who have no doubt that Bailey is in the arms of Jesus as we speak. We know her family would appreciate your thoughts & prayers on their behalf. Bailey's website is www.caringbridge.org/ks/bailey.

We returned back to St Jude on Dec 1st & 2nd for Emma Grace's first round of post-evaluation tests & scans. Please pray that God is keeping the cancer far away from our little angel. We believe He has healed her and will continue to keep our faith in Him to keep it gone.

Prayer Request for my dear friend, Leslie's daddy - Jim Rieff. He was recently hospitalized for an infection at Baylor Med Ctr in Dallas as his labwork "went out of whack" while receiving antibiotic treatment at home. He was released from hospital last Saturday but remaining in Dallas as they have to keep close tabs on his labwork. In 1994 he received a liver transplant then a few years later received a kidney therefore, requires "extra special care" when illnesses arise. As Les put it "it's really tricky doctoring a guy with so many 'previously owned' parts." Thank you for your prayers for Poppa Jim's speedy recovery!!

Thank you for your continued prayers for Emma Grace and her St Jude siblings. You can never know what it means to us to have you in our lives. May God bless you each and every day especially, for the love and kindness you show to so many. I want to share with you an excerpt from Max Lucado's "A Heart Like Jesus" - thought you might enjoy reading a description of God's awesome love. "God loves you just the way you are. If you think His love for you would be stronger if your faith were, you are wrong. If you think His love would be deeper if your thoughts were, wrong again. Don't confuse God's love with the love of people. The love of people often increases with performance and decreases with mistakes. Not so with God's love. He loves you right where you are." Thanks for letting His love shine through you!! We love you!!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, November 5, 2003 01:42 AM CST

Fall Greetings to all!! (Nov 6th Praise Update Added Below!!)

Ok...justifiably may I add, I have been prompted "ever so politely" about getting myself in gear and getting an update done. Would you believe I started this update two weeks ago, copied it and emailed it to myself to finish later...DID TWO WEEKS REALLY PASS ALREADY?!?!? So, please bear with me as this could get quite lengthy but I am determined to finish this TONITE!! ;)

First, let me say that Emma Grace & Eli are doing just FABULOUS!! She has only one more dose of Accutane which we go back to St Jude to receive Nov 10th. Her hair is growing ever so curly and she is still romping and stomping to beat the band. How being home has been so therapeutic for us all, especially for Emma Grace!!

Well, the day of the Praise Party arrived and what a day of CELEBRATION!! Daddy started the briskets smoking on Friday afternoon which led to an evening (and all night) of fire stoking. It was such a beautiful evening and the anticipation of Saturday's activities and last minute details were causing excitement around the house.
Saturday was WILD!!! Folks started arriving around noonish until late that evening. As near as we can estimate there were about 250 folks who came to share in the Praises of our little Emma Grace. It was such an emotional day as so many wanted came to share in celebrating the miracle God has performed. Dr. Rosenschien, Emma Grace's doctor who diagnosed her in Springdale Oct 10th of last yr, was able to join in the festivities. This was the first time that we had seen him since we left for St Jude Oct 13, 2002. He was thrilled to be part of the party and we were so touched that he could join us. God placed him in our path at precisely the right moment which was all in His perfect plan of taking care of our angel. Little Sarah Claire, Mom Monica and Mimi Sharyn were able to sneak in from Cleveland, Mississippi to join us. Sarah Claire is making such wonderful progress. They got to spend the night with us and go to church on Sunday before leaving for home. She is another of God's miracles we have been blessed to fellowship. This was a day of undescribable emotions as we are so very, very blessed to share this time with family and friends. We were just touched beyond words at the outpour of support in gathering to honor God and what He has done!!

We had a grand time in fellowship, sharing in the delicious eats that everyone brought and the music...well, there just aren't words. Tim West brought us a variety of "dinner tunes", then Pam Hardbarger and her group shared several touching gospel numbers, Rick Hancock & the crew continued with some great country tunes, Emma Grace & I sang her absolute favorite, "Through the Fire", which she independently chose to try to do alone (smile), Miss Makayla Baldridge (wearing her "I love Emma Grace" shirt that her Momma so sweetly made) bravely stood in singing her praises, Mr. Nicholas, 5 y/o & Miss Kylie, 3 y/o - Rick & Crissy Hancock's little angels boldly sang "Jesus Loves Me", Shirley, Vernon, Jim & Glenda from New Sulphur Church came to share in praise & song and then our crew from Summers Church - even help from Mimi Sharyn - finished the night of singing His praises. We just had a glorious time!!And this shouldn't surprise you one bit - we were loading up the last of the leftovers to take to church for fellowship dinner on Sunday nite...wouldn't you know it started barely misting rain. Now, does our God have great timing or what?!?!?! We thanked Him graciously for holding off the rain for the night's event and added "Ok..You can let it pour now!" I sure am glad that God has a sense of humor, aren't you??

We wished everyone could have made it but knew that just wasn't possible. We knew that you were with us in the spirit of celebration. One day there will be a gathering among ALL gatherings where we can have the ultimate Praise Party beyond our wildest imaginations with Jesus Our Lord!! What a day that will surely be!!

Obviously, the days seem to slip by with seriously, the best intentions of keeping you updated better. Eli has been busy with PeeWee football (don't tell those boys they are "peewee" cause they seem to think its the big time!!) which just ended last Saturday. Momma & Daddy working again and getting back in the groove makes things seem more normal but we're not sure what to call "normal" anymore. We certainly look a many things through different "eyes" than we did a year ago. And we thank God for opening our eyes and most of all, our hearts. To share just one more day is nothing short of God's miraculous works right before our eyes which humbles our hearts beyond words. He is so very good!

It's hard to close when it doesn't seem like I have expressed all that is felt by our heart - those words just don't compute. Just know that there is no way to fully tell you how much thank you for your kindness, generosity, your continued prayers and most of all, how very much we love you. We ask God to shower you with His blessings which are far better than anything we could ever offer. Thank you, our friends and family, treasures of our heart.

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PRAISE REPORTS & PRAYER REQUESTS FOR OUR ST JUDE FAMILY:

Miss April Currier went home to be with Jesus on Oct 11th. Her family certainly needs our prayers daily as you can only imagine. This is such a precious family. It would be worth your time to read Momma Theresa's journal history entry on Oct 12th. What a testimony! www.caringbridge.org/fl/aprilcurrier

Miss Anna Clint is unable to complete final chemo treatment as the last chemo put her in ICU on a vent. Please pray the treatments she received are sufficient to take care of her cancer. www.caringbridge.org/oh/annacatherine

Miss McKenzie from West Virginia has started a new chemo as the last MRI showed a 20ncrease in her brain tumor. They certainly would appreciate your prayers and are full-faith-believers that our God is in control. www.caringbridge.org/va/mckenzie

Miss Rawan from Alabama found out recently that her chemo did not affect her brain tumor and they started her on a different medication. She sent us an email recently asking for our prayers which I am passing on to you.

Miss Christal from Tampa is having more difficulty in her "steadiness & balance" issues. They have fitted her for ankle braces and physical therapy to help her. They are re-evaluating her eye being crossed continuously now.
http://christalinfo.servemp3.com

Mr. Dustan Heaton, Sikeston, MO is having tough decisions ahead with his continued treatment and the tumors that have appeared to be inoperable. They are returning to St Jude soon for tests and consults.

Miss Bailey Kistner from Kansas has relapsed and back at St Jude for more treatment. This dear family certainly need your prayers as the choice of treatments were few as her brain tumor is a very aggressive type. Her family had to try and said "it's all in God's hands".
www.caringbridge.org/ks/bailey

A fellow prayer warrior for our children, via "a friend of a friend", The Dudley family in NC. Their daughter, Morgan 8 y/0, has cerebral palsey with increasing seizures. Our mutual friend, Leslie, asked for our prayers for Morgan as well as the family.

Miss Tori, Orlando, FL is back home from St Jude. She has a three yr protocol for leukemia and travels to & from on a regular basis. www.caringbridge.org/fl/tori

Miss Karina - doing well at home-home!! We miss them bunches!! www.caringbridge.org/md/karinahurtado

Miss Lauren Collins from Virginia has had recent tests that show IMPROVEMENT!! One lymph node in chest that was showing is GONE! And the hot spots around original tumor are there but less than last scan!! Praise the Lord!! www.caringbridge.org/va/lauren

MISS ZOIE IS HOME-HOME!!! Finally she got to go back home to Duson, LA last Friday!! WHOO WHOO!! One of God's little miracles and thanks so much for your prayers! www.caringbridge.org/la/zoie

11/6 UPDATE!!! Miss Sarah Claire had her follow-up scans/tests completed on 11/5 and ALL IS CLEAR!!! THANK YOU LORD!!

On Dec 1st & 2nd Emma Grace will be having her first set of post-evaluation scans/tests. Prayerfully, they will be clear!!

I know this goes without saying that there are many of our dear St Jude friends who you know always are in need our prayers. Thank you for lifting them up!!

Thursday, October 2, 2003 7:59 PM CDT

Greetings! Greetings!! Greetings to All!!!

Ok, ok, ok...we're slipping again in the update department. (Can ya tell Momma went back to work?!?!?) But that's a good thing...the Momma going back to work thing. SMILE!!

Emma Grace is doing hunky-dandy-dorey!! She is putting on some pounds, looks like she's grown a foot (ok, justa inch or two), back at Susan's house for daycare three days a week, growing more & more hair and SHE TURNED THREE!!! What a milestone in the Hampton House!! God has surely shown His mighty Hand in healing her little body. We had a family birthday party - which ended up being 47 folks! - and did she have a ball!! At last, a birthday party without her being sick and one she TRULY enjoyed. Truth being known, we had as much fun as she did.

ZOIE PRAISE REPORT!!! God continues to strengthen her little body and she is now wheelchair free, walker free and walking on her own!!! It just gives me chills at God's mighty power, mercy and grace. Another one of God's miracles right before our very eyes!!!

Well, as mentioned earlier the Official-Home-Home-Coming-Praise-Party is set and we're looking forward to seeing you!! Consider this an official invitation ... Saturday, Oct 11th - drop in whenever ya like from 3pm until ??? Bring what?? A lawnchair or two, a sidedish or sack of chips if you want but not necessary, and an APPETITE!! The smoker is getting ready to be fired up for some tasty fixins, the bands are warming up and we're looking forward to having a GREAT TIME!!! And when we say the more the merrier...that's what we mean!!! So load 'em up and c'mon!! If you need directions, please give us a holler at the number listed on main page or email us.

We have so very much to be thankful for and what better way to praise & celebrate but with our dear family & friends!! God is certainly awesome, AWESOME!!! Thank you for your continued prayers for Emma Grace and her St Jude siblings. May He bless today and always!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Ecclesiastes 3:1 & 4 "To every thing there is a season, and a time to every purpose under the heaven:....A time to weep, and a time to laugh; a time to mourn, and a time to dance."

Saturday, September 20, 2003 11:54 AM CDT

Hey Crew!!

Just wanted to let you know about Emma Grace's recent visit to St Jude this past Monday. All labwork looks great and the ABR hearing tests show that she has sustained considerably more damage which is getting into the mid ranges of hearing necessary as "functional" hearing. They took impressions and she will get her hearing aids next visit in Oct. This is pretty common with neuroblastoma kiddos who receive the Cisplatin chemo. Whatever it takes as we can look at our little angel all day with hearing aids.

Emma Grace's first airplane flight was pretty exciting. She stayed awake long enough for the anticipation and boarding, the take off and when I looked down to tell her we were above the clouds...she was conked out. ha! She had seen all she needed and it was time to snooze.

We got to see little Chelsea from West Virginia and had supper Sunday nite with her, Momma and Grandma. It was so nice to see them and man! has Chelsea grown. She was back for her 6 mos post scans and we're praying all is still clear and clean.

We also ran over to Uncle Ronald's house via "Travis Taxi" (Zoie's Daddy). Emma Grace & Zoie just squealed with joy over each other and were wound tight even with it getting late. They conversed in volley of who loved who the most and who missed who the most. It was so good to see how Zoie is improving. She was so excited to show us how she could walk with her pint sized walker. With each step she took her excitement increased and so did each tear of joy that fell from my face. She certainly has come along way in a month's time and yet has a way to go with the ongoing rehab but she'll get there. Thanks for your prayers and continued prayers for Miss Zoie and also, for Mom Chastity and Daddy Travis. The days get mighty long while waiting and we know it has to be rough on them.

Well...a huge milestone in the Hampton House as we are celebrating Emma Grace's 3rd birthday today...her birthday is actually tomorrow on the 21st. Considering the year's past events it is quite overwhelming to comprehend God's awesome mercy and grace for our Emma Grace. For a child that was so very ill a year ago, it is amazing how He has cradled and cared for her to the healthy child she is today. We continue to praise God and thank Him for His mercy in letting us celebrate her 3rd birthday!!

Now...the "Official Comin' Home-Home, PRAISE PARTY" is on the agenda for next month. Mark your calendar, bring a friend, a sidedish (or a bag of chips..ha) and throw in a lawnchair or two. It will be at our home west of Lincoln, Saturday, October 11th from 3pm until ??? Rain or Shine!! So make plans for FUN, FOOD, TUNES, MORE FOOD, and most of all, LOTS OF PRAISE & FELLOWSHIP. Daddy Barney & our dear friend, Lumpy will be firing up the smoker & grill for a mix of meat feast. Live music is scheduled with Rick Hancock & Company, Ms. "Grace for the Task" Nancy Halsey - and hopefully, have Pam Hardbarger & friends on board. We don't begin to know how many folks you have forwarded our little angel's prayer requests and updates to but PLEASE forward on this Praise Party invite to them as well. This will be THE MORE THE MERRIER SORT OF THING!!! We've got lots of necks to hug and we thought this would be a great time to gather. This will also mark our 1 yr of diagnosis so what a more perfect time to have a celebration for all that He's done!! A GREAT TIME WILL BE HAD BY ALL AND WE WOULD LOVE TO SEE YOU THERE!!

Thank you so much for all you do through your prayers, your love and friendship. We appreciate your continued prayers for Emma Grace and her St Jude Friends. May God richly bless you today and always!! We love you and look forward to seeing you soon!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Monday, September 8, 2003 5:32 AM CDT

Hiddy Ho Crew!!

We know you have wondered if it would be another MONTH before update ... sorry. One would think being at home all this time would allowed me to get the "to do" list completed in a more timely manner. Yeah...right! ha!

Emma Grace is doing just grand!! She is romping, stomping, blowing and going!! Most of all, she is feeling great. Mommma went back to work last Thursday, yep, "back in the saddle again" as the singing cowboy, Roy Rogers would put it. It was certainly a day of mixed emotions ... Emma Grace was none too happy but understandably so as we have been only a stone's throw from each other for the past 11 months. And Momma, well, let's just say it was sure nice to hear her SQUEAL with joy when I walked back in the door to pick her up. She's (we're) fine now and it was sure nice to be back to work with the crew at Starr Motor.

Emma Grace & I will be headed back to Memphis on Sept 14th on a "big bird". She is THRILLED that we are getting to fly this time and has told everyone that we're flying. Hey, she's all for adventure! Her appointment will be on the 15th and fly back that same evening. St Jude actually takes care of the flight for us which is so wonderful besides it is just too tiring to make that turn around by ground in 24 hrs. The oral chemo is half complete now so she has three more rounds and will be finished in November.

Just a note that plans are in place for Emma Grace's PRAISE PARTY on Saturday, Oct 11th ... so mark your calendars!! Complete details will follow as we just decided this weekend which date to set this big event. We had thought of having it close to her birthday, Sept 21st, but decided she needed to have that day set aside for her own special birthday party. We have so much to be thankful for as each and every day is a Praise Party with our little miracle God has given us.

Have to share an Emma Grace classic from the past weekend - We were driving to Ft Smith after church yesterday afternoon and Emma Grace asked, "we going back to church, Momma?". I replied, "tonite, is that ok?" Of course, she agreed and loves to go, oh and has she learned to be quite the little congregational singer. (smile!) I was complimenting her on her great job of singing that morning and I told her we love to go to church to learn about Jesus and sing songs to Him. And the next profound statement could have knocked me over with a feather as it was from her well-beyond-her-years heart. "Momma, we go see Jesus anotherday." "That's right, honey, anotherday" I choked in reply. She added, "and the cross won't be heavy." Ok, now the tears are streaming as I try to comprehend the last response from her little, almost 3 yr old mind. God was certainly speaking to Momma thru my baby as she seemed full of joy and contentment with her analogy. One of her favorite songs that she helps Momma sing is "Through the Fire" which talks about facing trials and not giving up, trusting God as He is always sure to be there. And her favorite is the chorus - which she sings boldly - "He never promised that the cross would not get heavy, or the hill would not be hard to climb. He never offers victories without fighting, but He said help would always come in time. Just remember when you're standing in the valley of decision and the adversary says, give in. Just hold on, our Lord will show up and He will take you through the fire again." In the course of a ten minute conversation Momma was ready to shout!! I'd just received a mini sermon from my daughter who has bravely faced her battle with God holding her in His arms, leading the way. AND she is obviously looking forward to seeing Him "anotherday". Praise God for His speaking thru the hearts of babes!!

Well, Momma needs to close for now as the folks at the Ford dealership will be expecting me today. (smile) In other words, I best get in gear and get ready! Please continue to remember Miss Zoie who is making slow improvements but is having difficulty with her appetite. Thank you for your love & prayers for Emma Grace and our St Jude families! We love you and thank God for you daily. May your day be filled with a basket full of blessings from God!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

A reminder for us all - "Live by Faith, not Fear"

Wednesday, August 20, 2003 11:02 AM CDT

Hey Crew!! Hope this note finds your Wednesday wonderfully-well!! Praise, Praise, Praise Coming Your Way.....ready?

Justa quick update on little Miss Zoie-girl...Saturday Momma Chastity told us that Zoie was tired of that ole vent tube and pulled it out herself!! The docs were sure it would have to go back in within a couple of hours but little Zoie proved 'em wrong again!! She was able to breathe on her own even though her little body is very weak. She is full of that Cajun grit and determination - most of all blessed by so many powerful prayers on her behalf. Ain't God so awesome?!?!?!? Also, little Zoie is a milestone for the experimental drug for the liver disease, VOD. She is the only child to receive that high of dosage as they had no choice but to give it for her best chance of whipping the VOD.

Emma Grace was able to see her little buddy, Zoie on Sunday evening when we arrived at St Jude. (Not too sure anyone could have stood it had Emma Grace not gotten to peak in to say hello. whew! Thank ya Lord!) The nurses consented to letting her go to the door to say hello. They blew kisses back and forth. It about did Momma Chastity and me in to hear Zoie's little weak voice tell Emma Grace "I love you and I miss you". Ohhhh! She is surely one of God's miracles as even the transplant doctors were very grim about her survival. They certainly underestimated our God, eh?? Hallelujah! Zoie is headed back to the 4th floor and the extensive rehab will begin. They were getting her a wheelchair with head and torso positioners as she is still pretty weak. Stand back and give her alittle time cause that girl will be going strong in no time. She is such a strong willed little beauty!! I think it did everyone good to get to hug necks for a change. I know it sure did us!!

Well, Emma Grace's appointments went very well. All labwork - good, received our next round of Accutane which is she is on board with now and we return Sept 15th for another session similar to this recent visit. Dr. Santana is scheduling another ABR hearing test as the last one she did showed some possible further signs of hearing damage. So, we are going to re-evaluate them again next visit.

We were able to run (literally) through Ronald's house to say HEY to some of the ole gang that is still there...Mr. Stanton, Miss Victoria, Mr. Aaron, Miss Rosemary and their families. It was sure nice to see them again and it seemed longer than 5 1/2 wks since we lived there with them. We also ran by Target to see Miss Karina and sister, Jasmine who was thrilled to play together even though the time was short. We all had a good visit. They should be getting to go home-home next week?? Also, I ran up to the 4th floor to see Mr. Houston who is one his first round of high dose & stem cell rescue and is doing very well with his treatments. Got to see Miss McKenzie who was having a follow-up MRI. We are praying for good news on her...haven't gotten word yet of the results. We got to spend time with Miss Kristy on Monday ... she's going home!! They did her surgery last Monday to remove what showed on scans to be active tumor on her spine and they got in there to find it was dead!!! Guess who took care of that...you know, God shows up LARGE and in CHARGE, don't you just love it??

Well, we had a HUGE blessing of getting to meet singer Sherrie` Austin at St Jude who has just released a new CD "Streets of Heaven" and announcing her affiliation with St Jude. She is such a sweet person and we were able to thank her for her generosity for our children. If you get the chance to hear "Streets of Heaven", #1 grab a WAD of Kleenexes, it is just beautiful but hits awfully close to home. Especially for our dear friends who had to let their angels go home. And for the many of us St. Jude parents who have no idea of what to expect next except just to be faithful and let God lead. Miss Ashley's mom, Donna wrote recently about "Don't worry about tomorrow - God's already there."

Thank you for your continued prayers for Miss Zoie, Emma Grace and the rest of the St Jude family. May God bless you richly and Enjoy Today!! We love you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, August 12, 2003 10:26 AM CDT

HELLLLOOOOOO CREW!!

Ok, ok ... I will admit to being such a HOUND for taking a month to update. You'd think I could have found some quiet moments for a line or two. No excuses - even Christal's Mom can post entries from Hawaii ... OK. I'm just guilty! Sorry, Crew!! (The recent guestbook entry from "concerned in Mississippi" was a good sticker to get my goat! Sounded like a "Dear Abby" signature, eh?? ha!!)

The home-homefront is just DANDY!! Busy, but just dandy! Eli has started his first year of football (he's ten feet tall and bulletproof in his 11 yr old mind!!), square dance practice has started for the annual Clothesline Fair event, school starts Aug 18th, Daddy is back to work, going strong, Momma has been being the domestic queen - cooking, laundry, even getting some brushhogging done at Poppa's farm, (yes, a true farm girl at heart - driving a tractor with the wind in my hair, the smell of diesel fuel - mmmm, sunburned and being swarmed by a host of grasshoppers. ha! What fun!! Really, it was!!), Emma Grace and Momma playing (more than working usually), she has been in HIGH GEAR just having fun!! We had bible school week before last and had a great time. Karina & Marci came to stay with us a few days which was therapeutic for all. The kids had LOTS of play time to make up. It was so good to see them. Most importantly, Emma Grace is doing FABULOUS!! Playing hard, wonderful appetite that is also making up for lost time and just getting a chance to be a little girl! If you didn't know what all she had been through, you'd never know anything was ever wrong. Well, other than the fact that you'd wonder why in the world her parents gave her a burr hairdo!! She has about 1/2" growth, the unibrow is back and those eyelashes, wow! they enhance those baby blues which make it ever so hard to say "no". We are scheduled back @ St Jude on Aug 18th for checkup with Dr. Santana, labwork and refill of Accutane which she has 4 more rounds. SOOOO, you see our past month has been full of just getting to be back home-home. It has been a evolving transition that is starting to feel alittle more "normal" - if life is ever normal after cancer.

Just have to say a HUGE, from the bottom-of-our-heart THANKS for your faithful prayers for little Miss Zoie. We talk to Momma Chastity & Daddy Travis on a regular basis and they are overwhelmed to your responses but more importantly are so touched that you continue to beckon God's Throne with your prayers. She is slowly progressing - still on the vent, liver functions gradually improving but has quite a road ahead of her. She's a little fighter and we all know that this is no feat for our God. He's got it all under control. Thanks Crew for your continued prayers for Miss Zoie!!

It's hard to believe it has been a year now since the sudden passing of my sis, Dianne. Considering the past events with Emma Grace, it just seems ages ago of losing Dianne. It was also a year ago that we had started the two-months of doctor appts with Emma Grace as she had slowly started to show "sickly" symptoms, periodic low grade fever, occassional nausea - just not general not feeling well. All too well, NOW do we know what was the hidden culprit. Losing Dianne was a devastation that I didn't know could be overshadowed by anything. Boy, was I wrong! We can truly say we no longer believe in "chance" or "coincidence" - it's all of God and He had everything worked out long before we could have known anything was going on. Even to the detail of channeling my energies that were focused on Dianne to the very little, fragile life that desperately needed every ounce of our prayer, attention and strength. Let us reiterate, all of which could not and is still not being accomplished without God's grace, mercy and most of all, His love. The prayers and support from you, the faithful prayer warriors, are constant strength to us! And how in the world could we ever thank you enough? See, God had that all figured out long, long before we ever could.

Recently, God has reminded us that He has had many, many recorded instances of divine healing - miracles. All He has to do is speak it and it is done. We believe that He could have healed Emma Grace before that red truck landed at St Jude on Oct 13th but He chose to heal her in His time. Maybe for all of us to become closer to Him through her journey and be reminded how truly awesome God is?? That's what it appears. He had many folks He needed us to meet, to gain His strength from and hopefully, those folks that needed to see His light in the midst of their trials. We just trust and pray that we did and said what He wanted us to. He has His reasons for everything and He certainly does not make mistakes. Immediate miracle of healing wasn't in His plan but everyday that she is here is an awesome miracle! What a truly loving and gracious God He is!! So, as you can see, "chance" and "coincidence" no longer apply. Sarah Claire's Mimi Sharyn told me that when folks refer to "isnt that odd? Nope, that's God!" How very, very true!

Well, my best intentions are not to let our updates go a whole month again. YIKES! Thank you again for all you do - we know God is putting an over abundance of jewels in your crowns as He never lets anything go unnoticed. Thank you for your continued prayers for Emma Grace and our St Jude family. We love you and thank God daily for sending you our way. May He continue to bless you richly!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish ***Check out the new pix!! HAIR!!***

"And over all these virtues put on love, which binds them all together in perfect unity. Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the word of Christ dwell in you richly, teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs singing with gratitude in your hearts to God. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God and the Father through him." Colossians 3:14-17 NIV

Tuesday, July 15, 2003 10:07 AM CDT

URGENT PRAYER REQUEST!! Update as of July 20th: One of Emma Grace's dear St. Jude Sis's, Zoie Schexnayder, has become very ill and today, was placed in ICU on a ventilator due to fluid in her little lungs. Please pray for God's healing hand upon Zoie, also for strength for Mom Chassity & Dad Travis. Also for the wisdom of the St Jude doctors to be able to find out what it causing the fluid problem. Thanks and God Bless! www.caringbridge.org/la/zoie

Howdy Do to You from Grand Ole NW Arkansas! HOME-SWEET-HOME-HOME!! HALLELUJAH!!!

Whew!! Who would have thought we're actually getting to call home - home! And how sweet it is!! It was quite a chore getting "moved" back home but thank the Lord for U-haul!! ha! (It was just a small trailer but much needed for the trip home.)

It was certainly bittersweet, to say the least - well it was downright heartbreaking - leaving our friends of St. Jude and the Ronald McDonald House. So glad to be headed home and to have this phase of the St Jude journey behind us but it's like moving away from home. Seriously...it's hard to explain. Almost a bit of a guilty feeling if that makes any sense at all. We just pray their days will go by quickly for them to return home soon as well. They can never know how they blessed our hearts and sometimes never even realized it. God is truly so good in allowing us to cross paths with so many who have become such a special part of our family.

Being home is wonderful but still a bit odd ... (I know, you think we've totally lost our minds ... ha!) Our friends who have finished treatment ahead of us had already told us sort of what to expect. It's a change that we know will get easier but right now it's almost alarming to unpack everything fully with the routine of thinking we may be heading back soon for another stay. It seems we have been on a continuous ride geared at a high rate of speed that has suddenly slowed to a crawl or even idled to neutral ... it's time for a deep breath while still waiting for the other foot to fall. We said all that to say this - we're faithful God has it ALL under control and He will direct this transition as well. In quoting one of our St Jude sis's, little Ashley Garrett - who is also now finished with active treatments - she reminded her mom, Donna, they are living by faith not fear. Profound point well taken from a little angel who definitely knows.

Miss Emma Grace is doing just lovely. Her hair is returning (again) and those dark, smudgy eyelashes and brows are making their presence known. She blazed right thru the radiation process and has had minimal side effects. We pray for His continued protection and are so very, very thankful for the miracle of His healing hand. It has been quite a journey these past nine months - one that we never could have prepared for. The bottom line is - God just picked us up and carried us as we could not have walked each day on our own. We pray for His continued strength and guidance for every day. We can sincerely tell you that is doesn't matter what's happening tomorrow, next week, next month or even next year. Today is what He has given us.

We will be returning to St. Jude on Aug 17th for a morning of visits on the 18th then back home that same night. Won't that be an adjustment?!?!?! It is been the norm to get to visit home-home once is a blue moon now we get to visit St. Jude. After August, we will return once a month for lab evaluations and refills of the Accutance which will be complete in November. She should have her 6 - month post evaluations of scans, xrays, testing, etc done in December.

We slipped away for the weekend on June 28th during the radiation phase and went to visit little Sarah Claire and her family in Cleveland, MS. What a blessing that weekend was!! Little Sarah Claire is doing so good and making steady progress. She is and has always been quite taken with Daddy Barney's beard ... never pulls, just touches. Pretty good for a 1 1/2 yr old, eh? We were thrilled to get to be in church with them again and even had fellowship dinner after the services. This church is also one that has been on the "prayer warrior detail" with us with Miss Emma Grace, as with many other of our St. Jude children. Eli's Sunday school teacher shared with the church about the discussion the boys had had earlier that morning in class. It was to the effect of asking God for something - maybe not necessarily something you want but something you need. He said the answers ranged from four-wheelers to baseball gloves to you name it. He said there was one little boy that said he wanted his roof over his head. Puzzled, the teacher asked what he was talking about. This little man said, "I just want my sister to get well so we can move out of Ronald McDonald's House and go back to our home." Give you two guesses which little boy answered that way about his little Emma Grace. Needless to say, there wasn't a dry eye especially from Momma & Daddy. We know this journey has affected so many and we tend to not realize fully the adjustments and sacrifices that Mr. Eli has had to make through this ordeal. Bless his heart - he just wanted to his sissy well and home.

There was a dear family that we met while in services at Cleveland, Bill & Patty Averitt. They have a son, Les, now 27 which they adopted at birth after trying to have children for 11 yrs. They came to us during the fellowship dinner and quietly, Bill said they need our prayer support. We got the impression that Bill didn't ask folks for much and certainly not concerning personal matters. He said he had prayed many times but had never asked God for a miracle until now. Sadly and unbeknowing to them a few years back their son had gotten involved with drugs, and until recently had been living on the streets, shelters, etc in Atlanta. If you could see these parents and know their story, you would be put in mind of the parable in Luke 15 concerning the prodigal son. We could tell that they would give everything they had just to have Les return again. At the time of our meeting the Averitt's, their son was not home. Sharyn, Sarah Claire's Mimi, told us later that week that Les was on his way back home. She said they certainly are still in need of our prayers as this is obviously not a quick fix. Anything is possible with God and He's got FULL control of it all. We promised to ask "our prayer team" for their prayers on the Averitts behalf.

Emma Grace is dragging out ALL her toys like they've been long, lost friends; Bubba Eli is LOVING having "his roof" back over his head and sissy home. He's headed to church camp next week which will be great timing for extra strength and getting being a kid for a change; Daddy is back to work - in fact, on his way to Cheyenne, WY as we speak to pick up some equipment for the company. Pleez say a prayer for angels on each wheel and on the hood of that rig to bring Daddy home safe. And Momma - well I'm just sitting here trying to let you all know (but there's just not the right words) how very blessed we are to have you in our lives.

We are so grateful for your love, support and mostly, for your continued prayers for Emma Grace and her St Jude friends. If your days seem to be "less than top-knotch", know there are prayers going to the Throne for you daily. It will make your heart smile - we know, you keep our hearts overflowing! May God Bless you always! Enjoy today!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Psalms 136:1 "Oh, give thanks unto the Lord, for He is good; for His mercy endureth forever."

Tuesday, July 8, 2003 10:33 AM CDT

HOWDY DO GRACE CREW!!!!

Well, you may have thought we forgot how to use the computer as it has been TOOOOOO LONGGGGG since last entry. (sorry) Seems the time is slipping much quicker than we could imagine.

Emma Grace is doing very well with her radiation - only TWO MORE TREATMENTS!!!! She is actually getting #14 as we speak and I thought we'd bettter let you know what's up!! She will be finished, that's right, finished this Thursday and we are loading up the big red truck for HOME-HOME!!!! We are movin' out of Uncle Ronnie's and MOVIN' HOME!!! Dr. Santana said she was going good with radiation so he is sending us home with her next round of oral chemo (Accutane) and we do not have to return until August 17th for labs and check up. He said that should be just an overnite stay once a month until she is finished with the oral chemo. HALLELUJAH!!!! How very wonderful God is!!!

There is lots and lots to say but our minds are in overdrive with the task at hand of getting things ready to pack, clean room and head home so bear with us and hopefully, when we get home the writings will be less spastic than now! HAHAHA

We love you all dearly and am looking forward to visiting on the homefront local. May God bless you always and thank you for your love & support - most of all your continued prayers for our little Emma Grace and her St Jude friends!!

Only By His Grace - Emma Grace & family

Friday, June 27, 2003 4:52 PM CDT

Hello Grace Team!!

Yes, I know, I know ... it has been too long since we updated you and for that we apologize. Honestly, I think we had a hard time getting the last entry off the main page since it was such good news.

The old saying "no news is good news" certainly holds true in Miss Emma Grace's case. She started her radiation treatments last Wednesday and has done wonderfully with them thus far. Last Thursday she started her oral chemo - retinoic acid, better known as Accutane. That was a bit of a feat as she had to learn to swallow pills. She has always done very well taking oral meds but in the past it was liquid form. After much coaching, pleading and just exausting efforts - she got it down pat!!! This little angel swallows these things without even a sip of H20 now!! Amazing - she could teach Bubba Eli a thing or two about the pill taking technique!! HA! She has to take the Accutane 14 days, then rest 14 days for six months total.
Overall, she is doing just FABULOUS!!! HALLELUJAH!!

We slipped away last weekend to Beebe, Ark. to visit Janet Conner and family at their church. She had an inkling that it was us as she need she had a surprise visitor coming on Sunday. It was wonderful to be in service with them again as we miss them since they moved from our home town. They were doing just great and Emma Grace was thrilled to see them!!

Bubba Eli went to church camp outside of Jonesboro this week and had a great time. He reported there were eight souls saved this week. AMEN!!! THAT'S WHAT ITS ALL ABOUT, EH?!?!? It was good for Eli to go and be a kid for the week. The hospital routine can get to be a bit hum-drum for him at times but he's counting down the days just as we are.

We were so happy to have supper with McKenzie and her family this week while they were in for checkups and tests. She looks wonderful! and it was so nice to have some of the old crew back at Uncle Ronnie's house to fellowship. Marci & Karina came over from Target House to visit as well. John & Mr. Spencer were here this week, as was Beth & Miss Rebecca, and little Anna is moving back to Ronald's getting ready to start her chemo rounds. Its kinda strange how the house changes with new friends that soon become old ones that are going home and back before you know it.

Please continue to pray for little Patterson that we mentioned recently as he is still holding on - on a vent but still fighting. Donna told us they have a complete peace about little Patterson. You know ... God is still on the throne. Also, please continue to remember Brendle's family. Brendle's birthday was last week and you know that had to be tough. In talking with mom, Janet & dad, Brian, they seem to be doing pretty well. It's just rough.

Well, we have EIGHT more radiation treatments then look out!!! We're actually going to be packing up the big, red truck to move home-home for good!! What a journey it has been and God just continues to bless every step of the way. What a truly awesome God He is!!

May God continue to bless you for your kindness and faithfulness of prayers for our little Emma Grace and her St Jude friends. We Love you and are so thankful for you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & MOmma Trish

Monday, June 16, 2003 2:08 PM CDT

HEY GRACE TEAM - THIS OUGHT TO PUT WIND IN YOUR SAILS!!!

Just a brief note to say we saw Dr. Santana this morning and received wonderful news....ALL her scans, tests, biopsy, etc are CLEAR, CLEAR, CLEAR. Nothing is showing active and after being on this St Jude journey for eight months now we actually heard the big "R" word - REMISSION!! HALLELUJAH!!!! AND AMEN!!!! WHAT A WAY TO START THE WEEK!!!

Of course, I had to ask for updated prognosis report and Dr. Santana said we still have six months to go before we can discuss that again. She will have re-evaluations again in six months and at that time will be finished with her oral chemo. But he did say "she has responded VERY well to her treatments and he is very pleased". You know we don't take those words lightly from "Dr. Conservative" (and I refer to him that way lovingly...ha!) But when he is pleased well you know Momma & Daddy are VERY pleased as well!!

Thought you might enjoy getting your day made! What a truly awesome, AWESOME God we serve!!! Overjoyed and overwhelmed at His marvelous power, mercy and grace are complete understatements. God Bless You and thank you, thank you, thank you for your friendship, love and continued prayers for Emma Grace and her St Jude family.

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Hebrews 10:23 KJV
"Let us hold fast the profession of our faith without wavering; (for he is faithful that promised;)"

Saturday, June 14, 2003 8:52 AM CDT

Hello Grace Team!!

Well now...aren't we getting to be very timely? Three weekends in a row at HOME-HOME?!?!?!? WOW!! WHAT A DEAL!!! Oh, the days are getting closer to moving home-home for good!! Besides, it was a grand anniversary present for Daddy & Momma be home-home. (Five years now! WHOO WHOO!!) It may have been Friday the 13th to some but it certainly was special for us. Oh, the days are getting closer to moving home-home for good!!

The St Jude visit was short this week with only a MRI on Wednesday and a bone scan on Friday. We had the big red truck packed with clothes for the weekend and was ready to ride as soon as Emma Grace was released from recovery. We sure seem to keep I-40 hot these days!!

Emma Grace has an appointment with Dr. Santana on Monday to review all the post eval testing that has been done recently. One we know about is her bone marrow biopsy since transplant that shows "no evidence of matastasized tumor present"!!! HALLELUJAH!! That is our God at work still healing her little body!! What a miracle!! (That's what we prayed for right crew??)

Her radiation starts next Wednesday and hopefully, we should be finished by July 3rd if they can squeeze a Saturday treatment in so we will not finish on a holiday. We are returning to Memphis this Sunday after church and will stay until they release us to come HOME-HOME!! We pray all will go as close to plan as possible and also for the rest of her testing to be clear as well. "Remission" will be a relief word we are all looking forward to hearing.

There are some very special prayer requests we need to share with you. Ashley Garrett (one of our St Jude sis's) has a new cousin, Patterson Toy, that was born at 30 wks, 3# 5oz, with multiple complications. The main problems are obviously his lungs which are not developed properly but also, he is missing one of his heart ventricles. He needs a heart transplant but his little lungs could not handle one at this point. The family has asked for our prayers in their strength and especially, little Patterson who is so very frail. They are such a strong, faithful family that has continued to inspire so many. Once again this dear family has been hit with an overwhelming situation and are in need of our prayers. I spoke to Ashley's mom, Donna, on Wednesday and she said they have peace about Patterson's condition as God has it all under control. The updates are on Ashley's website www.caringbridge.org/tn/ashleygarrett. If you have a chance to visit, it will bless your heart. Donna is inspired by God as a writer and touches the hearts of us all. Many times we have left their website just overflowing by her sharing of God's love, grace and praise!

Also, please remember the family of Donnie Pittman, who passed away last Wednesday. Donnie had fought a long, tough battle with cancer. Donnie & Clarice have two sons, Robert and Larry. Robert was one of my class buddies and Larry graduated with my brother, Chuck. Our hearts go out to them and they are certainly in our prayers. Cancer seems to be no respecter of age and it tears the hearts of many with its ruthlessness. We pray someday there will be a cure for all cancers as well as other life threatening illnesses and will be readily available.

Miss Brendle's family is certainly still in need of our prayers as the they are faced with continuing life without their precious little girl. Sadly, Brendle's birthday is Monday, June 16th which is obviously going to be a very tough day on everyone. In talking with her mom, Janet, this past week, their day to day struggles are at the very least, overwhelming. Janet is confident God will lead them in the direction He wants them to go and is giving them all the strength, love and comfort He so freely gives. She said it is just so hard. They have a memory garden in their yard for Brendle with various plants, flowers, angel ornaments etc. that have been sent to them which Janet said is very comforting.

The next few weeks will hopefully go by quickly but you know how it can "slow" with the excitement and anticipation of finally coming home-home. Bubba Eli is going with us now which makes Emma Grace THRILLED daily! We look forward to seeing some of our dear St Jude family that are returning the next few weeks for checkups and others for continued treatment. Miss Christal, Mr. Spencer, Miss Tala, Miss Anna and Christy Leick are on the agenda for the next two weeks of arrival so we are sure looking forward to seeing their smiling faces again!!

Well, guess I'd better close for today. It seems my posts get longer when we only update once a week. (My best intentions were more often than this! ha!) We love you all and are thankful continuously for your faithful friendship and most of all your prayers for our Emma Grace and her St Jude family. May God continue to bless you richly!!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Saturday, June 7, 2003 2:48 PM CDT

Well Crew ... WE DID IT AGAIN!!! We're HOME-HOME for another weekend (plus) visit!! We are certainly looking forward to the day of packing that big, red truck for the moving-home-for-good process. One day...one day...

Emma Grace had her radiation simulation on Wednesday plus a CT scan. She has all the marks to get started but it is post-poned until June 18th. Dr. Krasin, Emma Grace's radiologist, will be out of the office until the week of the 16th and he asked that we not start radiation until he returns. That works for us! He seems to be the BMIC ("big med in charge") in this phase so let's just go with the flow and wait for his return, eh? Looks like we should be finished somewhere between July 3rd - 7th. Yep...getting closer...

Home-Home was therapeutic for EVERYONE involved!! Uncle Chuck had a grand idea of placing us in a local meeting spot last weekend rather than us running ragged trying to see as many as we could. So he obtained the banquet room at Razorback Pizza (great local eatin' joint for you "outta towners"). It was wonderful!!! Without a true pin-pointed total we estimated 70-75 folks showing up - on last minute notice I might add. Emma Grace had a blast and couldn't comprehend this was a "party" for her!! This was a prelude to the HOOPLAH that is to come in September better known as our Emma Grace PRAISE PARTY!! Details to come as time gets closer ... (you know we don't plan things too far in advance these days.)

Emma Grace had quite a fun-packed visit back to St Jude these past four days. Tuesday when we arrived was just catching up and relaxing with the house friends at Ronald's. We had a nice surprise seeing Rebecca Skinner, mom Beth and dad Dan who came in for a checkup MRI - which showed CLEAR!! HALLELUJAH!! Wednesday was simulation & CT Scan @ St Jude. We slipped in to check on Miss Karina, who is going thru round 2 of her chemo phase while Emma Grace was being "simulated". Then later that evening we went to eat with Zoie, mom & dad Chassity & Travis (the crazy Cajun dad!!). The girls were thrilled to find out we planned to have a carriage ride after dinner. Boy o boy! Did they have fun!! It was a beautiful night to ride and poor ole Bwondie,(Blondie) the Belguim horse-power, literally had her wagon full with all six of us. Can't really say Zoie & Emma Grace made much of an impact on the weight tally though! ha! Thursday Emma Grace had her bone marrow aspirate & biopsy to follow-up with the transplant, another CT then a St Jude photo shoot with her favorite nurse Ashley. Emma Grace was being quite onery but we finally got it done. We had our infamous Ronald House cookout with our St Jude friends - good ole hamburgers and hot dogs. Barney & Travis were our chefs of the evening! Friday is home-home travel day but we had one more St Jude photo shoot with Zoie & Emma Grace. Have you ever tried to get a 3 yr old and a 2 yr old to cooperate and smile at one time??? It was quite the adventure to say the least! ha! But it was worth it. What little hoots those two are!

As we mentioned in previous notes Miss Zoie has neuroblastoma like Emma Grace. Zoie had 11 rounds of chemo in effort to get her bone marrow clean and it finally worked so now she can proceed to the transplant phase which she begins on Monday, June 9th. Everything is looking good and she will receive her own stem cells. They had a chance to sneak home for the weekend prior to their extended stay at the St Jude suites on the 4th floor.

We are counting days until we get to see Miss Christal & mom, Chris again on June 14th. It seems like EONS since we have seen them. Christal is coming back for her first checkup since her treatment has been complete. Emma Grace is looking forward to seeing "Cwistal".

Well, we are off to St Jude again on Tuesday for an MRI on Wednesday. (Whew!! we're keeping I-40 hot!!) Bubba Eli is making the trips with us now that school is out. We are still domicilied at Uncle Ronnie's house and should remain there until we are done-done. That seems to be such a strange soon-to-be-reality. As visiting with other St Jude parents who go home at end of treatment, they express what an adjustment it is to get back to "life away from St Jude". So much to settle and soak in after being in major high gear for months. What a journey. More importantly, what an Awesome AWESOME GOD to lead us thru such a journey. How truly wonderful He is!

We keep you all in our prayers always and are ever grateful for your love, support and most of all, your continued prayers for Emma Grace and her St Jude friends. God is faithful in continuing the miracle He has begun on Emma Grace and we look forward to His completion!! May God Bless and enjoy today!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Saturday, May 31, 2003 2:38 PM CDT

GREETINGS FROM BEAUTIFUL NORTHWEST ARKANSAS!! HOME-HOME!!!

Hey Crew! Just a few lines to say hello actually from home-home for a short break. We slipped in Friday morning around 4am with a little angel that was wound to the gills once she realized she had only 30 more minutes before we landed at home. Thank the Lord she had went to sleep around 8pm the night before because it took a good 1 1/2 hrs to get her down for a "nap" so Daddy & Momma could snooze a bit. Nanna showed up around 8:30 to pick up a school book for Eli and to her surprise she found the big, red truck sitting in the drive. SURPRISE!!! Eli squealed with joy when school was out to find some very familiar faces after a long hard week of studies!!

Well, the toys are scattered from one end of the house to the other, the lawn mower is running while giving "fresh air" therapy to Daddy, Bubba Eli is gathering limbs (of course getting to drive Daddy's truck in the process ... ha!) and Momma should really be taking down the Christmas tree, yes, that's right ... the Christmas tree but we are all just enjoying being home. Besides, when Miss Emma Grace walks in the house after being gone for soooo long and decides she wants her Christmas tree lights on, well, who could take it down now?? Just doesn't seem so important right now in the grand scheme of things, ya know?
So, Momma is trying to get the website updated as it is way overdue, scanning some pix that we want to take back to St Jude, etc. BY THE WAY >>> There are some new pix added to the guestbook that Uncle Chuck put on this week. Hopefully, we will be able to update pix more readily as Uncle Chuck got a great new digi camera that does it all.

Emma Grace is DOING JUST GREAT!! Her numbers are recovering very nicely now, the last blood transfusion was May 23rd and platelets were May 12th. NOTE: Of all the times Barney has donated platelets for these children, Emma Grace was actually the receipent of HIS platelets on the 12th!! He always donates without specifying for a certain patient receiving as we never know when she will need a transfusion but this time it worked that she got Daddy's platelets!!

The transplant phase is now behind us and the concensus from her St Jude Doc's is to do 13 radiation treatments which will begin on June 11th with the last ending on June 27th. And then we come HOME-HOME!! Needless to say we are thrilled this portion of our journey is nearly complete and what a journey!! The closer it gets to reality the harder it is to believe we are almost finished. We have been (and still are) guests of Ronald McDonald's House since Feb 4th this time around. We are headed back to Memphis next Tuesday for radiation simulation at St Jude on Wednesday, the 4th. Then Wednesday, the 11th she starts her radiation phase. She will come home on oral chemo for 6 months with only having to return to St Jude every 3 weeks for refills and labwork. Wow! That's quite a difference and will be an adjustment as it was usually US coming home-home every 3 wks. I believe we will learn to adjust while getting to sleep in our own bed for a change, don't you??? ha!

As you can already assume from past entries, the journey God brought us to at St Jude He has been filled with many, many overwhelming blessings. One of those being the St Jude children and their families that we have become very attached. One of our St Jude mom's once said that you come with one sick child and leave with many children. They all have touched our lives and most of all our hearts. And though our prayer is that each and every one of these children are healed completely, that is not always the case. Miss Brendle that we have asked for your prayers went home to be with our Lord last Sunday, May 26th. She fought a brave, strong battle to the finish. We can only imagine that she is in heaven stealing hearts just as she stole ours. Please continue to pray for Brendle's family for the peace and comfort that only God can provide.

We thank you from the bottom of our hearts for your continued love, support, friendship and most of all your prayers. What a wonderful, loving God to provide us with the shoulders to lean on, to share the joys as well as the triumphs. We are so grateful for your continued prayers for Emma Grace and her St Jude friends. We love you all and May God bless you always!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PS...Remember there's a "Praise Party" in the plans sometime late summer/early fall when we get all this behind us! One day...one day...

Ecclesiastes 3:1-4 NIV "There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance..."

Friday, May 23, 2003 2:03 PM CDT

Howdy Do Crew!!! (Its been a week since last entry so you know this one will not be brief!! HA!)

Yeppers ... it is just FABULOUS to be getting fresh air everyday!!! We return daily for labs, B Clinic visit and her G-CSF thru IV (which used to be referred to as the dreaded "g-shot" but now she gets thru her line - no more ouchies!! yeah!). Once her ANC recovers to 3,000 two days straight we quit the G-CSF the B Clinic (transplant team) will hand us back to D Clinic (solid tumor) where we will be seem by Dr. Santana again. Feel like a full circle to you?? The docs are going to have meeting of minds soon to decide if Emma Grace is going to require radiation before being sent home. Just getting alittle closer everyday!!! Her ANC hit 3,000 for the first time today!! YIPPPEEE!!

Emma Grace is doing so good - we continually are amazed at how these little angels bounce back so quickly. The children receiving complete transplant, as with Emma Grace, the high dose chemo takes their bodies to "zero" and beyond in order to get the bone marrow completely gone before replenishing with the "good, clean" cells. So, it is even more astonishing that these children recover so well. It is truly the hand of God at work right before our eyes and protecting these little ones.

Emma Grace is so thrilled to be "free". She has had to reacquaint herself with her toys that we left at Uncle Ronnie's house while we were inpatient. ha! Now, believe you me, we were never in short supply of "Wiggles" videos at St Jude. Those go everywhere with us just in case a Wiggle-attack hits and we need a jolly fix. (Here's a bit of trivia for you adults - How much Wiggles can we stand before totally losing our minds?!?!?!?!) HAHAHA Oh well, Emma Grace loves them so if she's happy, then we're happy.

Emma Grace has been playing with little Aaron, 4yrs. and Zoie, 3yrs. who are also Neuroblastoma patients. It seems in the past when Zoie was staying at Ronald's we were on different schedules and the girls didn't really have a chance to get acquainted much but all that's in the past now. They such a hoot ... both are EGG eatin' girls and FAVORITE of all FAVORITE snax is LIttle Debbie Oatmeal Creme Pie Cookies. (Stock tip: BUY NOW!!! It's getting ready to gain!!) Aaron & Mom, Marilyn, took Emma Grace to the Zoo yesterday as they were having a special tour for the St Jude families so they got to see the new Pandas!! They had a grand time. Aaron is the little boy who paralled in transplant phase with her. Started high-dose same day and got their stem cells the same day, etc. He got out of hospital the next day after us and is doing great as well.

Little Karina just got out of hospital today after having quite a time after her first round of chemo. She will be ready to start chemo again next Thursday if all goes as planned so we know she is ready for some wonderful sunshine and different scenery. Also, we ran into Ashley Garrett's mom this week and Ashley is doing wonderful. She just had surgery which would close the incision and wound that she received from her first surgery in her leg.

The house @ Ronald's has turned over again - new folks arriving, St Jude friends returning and sadly for us, some of our St Jude friends either finished treatment only to return for checkups or they completed this phase of protocol which enables them to return home for a break. Change is never easy to take but you just have to get used to it as change is inevitable. We do talk to Little Christal and Mom, Chris quite often and she is doing well ... coming back for checkup on June 16th. Also, Little Sarah Claire will be here next week for another followup and has been doing remarkable! God is certainly amazing!! Just seems like quite a few of our crew is gone leaving the "house" alittle too quiet. Little Anna Clint, Springsboro, OH left on Wednesday returning for chemo phase the end of June; Michael Adams, South Carolina moved to Target Monday; Little Spencer Beckstead, Orlando, FL is finished with treatment completely now; Little Tala Maalouli, New Orleans, LA completed treatment both of which will return just for checkups. Those dear families that have left with their angels as there are no further treatment options available at St Jude, specifically Brendle, are truly the ones who leave our hearts in shambles. Please continue to pray for Brendle and her family. They are in need of a miracle and we all know God is still in the miracle business. With each one we just have to pray constantly for their strength and healing with the faith that God has full control.

Looking forward to Bubba Eli, Uncle Chuck and Kellye to showing up this evening. What wonderful weekend for them to be here not only for the weather being so great but to spend time with Emma Grace while she is feeling so good.

As always, we thank you for your continued prayers for Emma Grace and as well as her St Jude friends. How very grateful we are that God is so gracious in placing you in our lives. We love you and May God Bless! --- by the way, HOME-HOME IS JUST AROUND THE BEND!!! Have a Grand Weekend!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

"Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Sunday, May 18, 2003 1:11 PM CDT

HELLLLLLOOOOOOOOO CREW!!!

Well, this will possibly be the shortest note ever (so don't faint) ... 'CUZ WE ARE BUSTIN' OUT!!! Emma Grace's ANC is only up to 300 but continuously rises 100 each day so THEY ARE TURNIN' US OUT!!! She has be very asymtomatic - nothing going on except just waiting on counts to continue to rise. Mr. Ken said this morning that everything is looking really good and it seems that she is "engrafting" well from all indications. HALLELUJAH!!! That's what we need to hear

27 DAYS INPATIENT - TIME SERVED - GET OUTTA HERE!!! WHOO WHOO!!! (Do you think we're excited or something?!?!?!?!?)

Quick note - Daddy returned by to "home" - St Jude - around 1:30 this morning after getting to attend Bubba Dustin's graduation. He had a great time and is certainly "proud Poppa" to see him walk to aisle. Also had a chance to see the grandsons for a bit while he was in Alma. Daddy had left early Friday to go get Bubba Eli so they could have "boys nite" - go get a bite to eat together, watch movies at OUR REAL HOME-HOME, sleep in OUR REAL HOME-HOME BED, and eat at OUR REAL HOME-HOME TABLE. I understand it was a good time had by all. Daddy said as much as he enjoyed getting to see the boys, he felt uneasy as his girls weren't able to be there with him. We reassured him that he was where he needed to be - we'd be waiting anxiously for his return. :)

Please continue to remember Brendle Overly & family as they left for home, Friendsville, TN on Saturday. Our hearts have certainly be touched by this wonderful family who have stayed strong and faithful regardless the news. We are certainly going to miss them and pray for God's marvelous Hand to touch Brendle and comfort her body as only He can. God is still on the throne, in full control.

We love you all and thank you so much for your love, prayer, care & concern for Emma Grace as well as her St Jude siblings. May God bless your days always!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, May 13, 2003 11:27 PM CDT

Hello Grace Team!!

Well, again apologies for it being yet another week between updates. My great intentions of updating this website at least every other day has seemed to slip thru my fingertips as well time in general. So, now it has become more of a weekly newsletter featuring Emma Grace & Crew. Does anyone else have trouble with the concept of "time"?? ha!

First, Happy Birthday to Granny Pat! Happy Birthday on May 16th to our Grandson Patrick turning 1 y/o and also, turning the big 5 y/o is Miss Christal, our St Jude sibling, who is now home enjoying EOT (end of treatment) in sunny Tampa, FL. And a big Arkie YAHOO! YIPPEE KI YEAH!! to Emma Grace's oldest bubba, Dustin, who is graduating from high school May 17th. Daddy is going to attend the celebration in Alma - driving up & back same day - but Emma Grace and Momma will stay close to St Jude as those are the boundaries should we be outpatient by Saturday.

Emma Grace is still in the holding pattern waiting on her ANC to recover. There has to be something going on with her immune system as the "Topo-Tan & Peel" is healing nicely now. Today is Day Plus 15 so we keep a close eye on those lab results every a.m. to see if we are budging at all. She is starting to feel like her old self again and getting fiestier every day. That's always music to our ears!! We moved to the 2nd Floor Monday night as we are pretty "low maintenance" as far as the transplant floor is concerned beside they had a waiting list of folks needing to get started on their high-dose chemos hence transplants. So they moved us to Room 2068 which Emma Grace seems much more relaxed with the ole crew of nurses we have spent so much time on that floor since October. Our new t-phone # is: 901-495-5268.

We have two special St Jude siblings and their families that certainly need an extra dose of prayer please. Dustan Heaton who is 18 y/o with Nasopharmygenalcarcinoma - (NPC which is a cancer that started in his nasal cavity). He and Emma Grace have been quite the buds for sometime as this big ole strappin country boy would even sit down in the play area to have Emma Grace "fix supper" with the pretend goodies and they would "tea party" together. You may have heard us talk about Dustan in the past being the young man that received a hunting trip in Texas as his Make a Wish and was featured on the Texas Trophy Hunting show. Dustan talked extensively in this segment about his cancer, his family and all the good that St Jude does for all the children. (Talk about a show that needed a whole box of kleenexes! whew!) Dustan and his mom, Billie, are never seen without smiles on their faces which always warms our hearts and they are just part of our St Jude family. Well, Dustan is routinely receiving treatment every Tuesday as his cancer is a very aggressive one. Last week he received his "big chemo" which Dustan always takes in stride but it has knocked his ANC way down and prolonged his treatment for this week. There isn't a protocol per say for Dustan as they are still in hopes of finding a treatment that will cure. They just need extra prayers if you could please.

Also, Miss Brendle Overly, who we have mentioned recently for special prayers, has come to a cross road as of yesterday. The tumors are not responding to the chemo and radiation which is never what any parent wants to hear. They are in process of repeating her evaluation scans & tests and sending her home on oral chemo. We intially met Miss Brendle when we were staying in Ronald's house back in November and bless her heart, she is fighting tooth & nail. We pray for God's healing touch on these two angels in our lives because no matter what ... there is always hope. Doctors can only do so much but God has full control.

Just a quick Emma Grace story before we close ... during the course of a long night last week, Emma Grace is sitting in Momma's lap talking 142 words a minute with gusts up to 187. She is telling Momma about going home-home ... "go get Bubba at Nanna & Poppa's ... go play with my toys ... go to my church and sing with Cwark (Clark) ... go see my horsies ... but can't go home-home til Dr. Santana tells me." Bless her heart, she knows the days are getting closer but even she knows we have to have get the walking papers from Dr. "Bictor" (Victor) Santana. Now mind you it is 2 in the morning and she is wound tight. She even recalls her Girls Day Out with our Nurse Ashley doing a play by play detail of their special day together. (I have trouble remembering what happened this morning much less a month ago!) But in a settling moment she snuggles up to Momma to say she is "so proud of Daddy for being her with me at my St Jude" and adds how she is "so proud her Momma is with me at my St Jude". Ooooo ... Where is the world did she think she needed to be "proud" of us for anything?? Truly, she is a little fighting angel that has faced every ounce of this cancer thing with the utmost of strength and bravery. There is nowhere else we could be but with her and we thank God for allowing us both to be here. How wonderful He is to work out all the details not only for our being away from home but also taking care of Bubba while Momma & Daddy can't be there just yet. We will attest the walls can get close at times but I, personally, am so thankful that Barney is here.

Children are absolutely amazing and when placed even in the strongest of adversities face their battle with the truest of grit and determination imaginable. They truly let go and let God!

Well, like we've been saying ... one of these days we're gonna have a huge "Praise Party" so get ready!! The days may seem long but when you compare where we were seven months ago ... it's getting closer every day!! We love you all and continuously are amazed at how marvelous God is in providing the best family, friends and most of all - Prayer Warriors!! May God Bless in each step you take and thanks for walking life's journey with us. What a blessing you are!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, May 7, 2003 0:13 AM CDT

Well...Howdy Do to You!!

SOOOOO sorry for the delay in updating...it has just been alittle on the hectic/wild side but now things have calmed down considerably. Thank You Lord!! Emma Grace is on Day Plus Nine now post transplant. Estimation time of her ANC recovering is usually around Day Plus 18 - 21. So, we are still in the holding pattern waiting on those numbers to start their way up. We will probably be inpatient for another 10 days plus. Then out to Ronald's house for ?? days/weeks before getting to come home-home. We don't even start planning a thing until they had us those walking papers, ya know?? ;)

Emma Grace is doing much better which gives us all more ability to breath deeper. The Topotecan chemo caused a red rash which has now changed to more of a chemo-tan that is now peeling. Itchy, Itchy!! The Doc Team has kept her very comfortable with continuous drip pain meds but yet she is quite alert, eating saltine crackers by the truck load, drinking vanilla coke ("white coke" as she calls it) and is daily making laps around the 4th Floor as the Trike Princess.

Bubba Eli, Uncle Chuck, Nanna & Poppa came in this weekend which was just what everyone needed. Emma Grace went to sleep Friday nite knowing they would be there Saturday morn and woke up in FINE FORM!! She had to show Uncle Chuck how she could burn the tires on her favorite trike while he was making his best effort to keep up with her pushing her IV pole at a high rate of speed. It was quite comical as Uncle Chuck's eyes were as wide as saucers in fear he would "zig" when she "zagged" before she finally came to a halt. Where's my camcorder when I need it?!?!? Nanna & Chuck stayed with Emma Grace Saturday nite while Poppa, Eli, Daddy & Momma went out to eat and enjoyed some time away from St Jude for a bit. It was therapeutic to say the least. Eli seems he has grown 1/2 a foot in the past few weeks. Soon he will be looking Momma straight in the eye. Where does time go??

We were sure glad to visit with them for the weekend as it had seemed so long since we had seen their smiling faces. It just warmed our hearts! Poppa came in first thing Sunday morning and left the rest of the crew at Ronald's house cause "Emma Grace needed to see him". He walked in to find her instructing him to "sit down and hold my hand, Poppa." How long do you think it took Poppa to sit down??

Daddy & Momma went to Ronald's house to shower and pack boxes to send to the homefront with the folks. We returned to find Emma Grace sprawled out in her Bubba's lap savoring the moments her Bubba was there to hold her. She commented on Bubba's new hairdo and said "that is so funny, Bubba". He didn't care ... just glad she was feisty enough to give him a hard time. We look forward to the time soon where she will be rashing him full time at home. Hopefully, won't be much longer.

Well, Emma Grace pulled a dandy yesterday by twisting and stuffing kleenex up her nose! "Daddy, get kweenex out!" "What you need a kleenex?" "No Daddy! Up my nose!!" Needless to say, Momma had to go get a nurse to fish out the "kweenex" that she had plugged her nose up with. Whew! Never a dull moment.

We have several praises to share!! Hallelujah!!
Ashley Garrett - All Tests & Scans CLEAR!!! COMPLETE REMISSION!!! Just continuing her physical therapy.
McKenzie Brewer - 15-20 percent REDUCTION in her tumor!!
Sarah Claire Holder - MRI shows that STILL NO TUMOR!! ITS GONE!!
Brendle Overly - is doing very well with her revised treatment and looking really good! She did fall in clinic on Monday and broke her arm. Yikes! :(
Karina Hurtado - had her first round of chemo and doing pretty well. She received her first of four stem cell rescues.
Bailey King - already came & went back to Florida after having her round of chemo. Doing very well.
Spencer Beckstead - doing very well with his radiation treatment. Should be finished May 21st & going home.
Christal Reynolds - The surgeons have decided to hold off on doing anything with her shunt right now. It seems to be working right now so they are finished with treatment and GOING HOME!!!

What amazing work we have seen from God's hand right before our eyes. In just a blink His healing power is present in these and so, so many others. Thank you for your prayers for these dear families others who have touched our lives in so many ways. Their strength and faith has been such an inspiration to us which only comes from the Father. What a wonderful Father He is!!

It was so good to see some of our St Jude kiddos that has either finished their treatment and coming back for checkups or coming back for more treatment in between home visits. Talk about some kiddos LOOKING GOOD by getting to be home. You Go McKenzie, Bailey, Sarah, Rowana, John, Emily, Sarah Cwaire, Blake and Ashley!!

As mentioned above Momma Chris & Miss Christal are headed home Wednesday after much "back & forths" of the surgeons deciding whether or not to replace/remove/rework the shunt situation. But little Christal had her double luman line pulled Tuesday and they are headed back to home in Tampa, FL. We have become more than attached to this dear little angel and her family which makes this entry bittersweet. We are so glad they are at the point of ending this chapter in their life but are sure going to miss seeing their smiling faces and contagious laughter on a daily basis. How very blessed to have walked a portion of this journey with them and the friendship God has allowed to flourish is just overwhelming. We have become St Jude family but what's really, really cool is that we're God's family. Momma Chris would say "Rock On, Sister!!" and that's exactly what we have to do. One day before too long those docs will be telling Emma Grace to load that big red truck and go home!

We have said many times that it is amazing what God will give you the strength to do and what you are actually capable of doing, when you really have to. It is only by the grace of God that we have met Emma Grace's cancer head on. If someone would have told us this time last year that we would need to prepare ourselves for this battle, I believe we would have said "How?" God seems to keep us all on a "need to know" basis. If He told us things too far in advance, it would overcome us mentally, physically and spiritually. For some reason we feel this need to worry because that's just what we do. But He provides all the armor we need to fight whatever it is we are facing. We are so thankful He also sends the Christian support which He has blessed and drenched with His unconditional love. How truly awesome God is!!

We love you all and thank you for your continued prayers for Emma Grace's healing as well as her St Jude buddies! You are the BEST!!

Hug a Momma's Neck for Mother's Day - She needs it!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

"Let us always offer to God our sacrifice of praise." Hebrews 13:15

Tuesday, April 29, 2003 1:40 AM CDT

Hello Grace Team!!

Today has been a VERY exciting day as Emma Grace had her stem cell transplant which started transfusion at 1:08 pm and was complete at 1:10 pm. Yep! It was that quick!!! From the time the cryrogenetic team rolled in at 12:55 pm, verified Emma Grace with her frozen stem cells, thawed them in the bath container, drew them up in a 60 cc syringe which was handed to Richard, on the BMT team, who infused her stem cells thru “Leonard” (one of her double Luman’s) and the cart rolled out was 15 mins flat. Richard said, “Seems pretty anti-climactic compared to what she had to go through to get to this point, huh?” Well, yes and no. We are just so thrilled this day is here and are continuously amazed at the technology God has given these folks to know this is what it takes during this phase to get our little angel well. What is more astonishing and mind boggling is that God created such a complex body that has told her stem cells to go back to their origin - the center of the bones and “do your job” of starting the rebirthing, if you will, of her bone marrow. I couldn’t help but think once they were in her little body that the lead stem cell that was planted gave a good ole Arkie hoop-n-holler with “C’MON GANG!! THIS WAY TO THE BONES!! WE’VE GOT LOTS OF WORK TO DO!!!”

Today is considered “Day Zero” as the Bone Marrow Transplant Team calls it. We start counting days waiting on those stem cells – which are the most pure cells in our bodies – to start engrafting to start making new, healthy, CANCER FREE cells!! They estimate about 18 days before her ANC (immune system) starts to recover which they will boost again with the G-shot (Filgrastim) starting on Tuesday. The ANC number they are looking for is 3,000 for two consecutive days then we can check out of the “penthouse suite” at St Jude. In other words, we are looking at 3 more weeks or so for that to happen. You all know by now that we just pray, pray, pray and don’t plan on any set dates. We are just looking forward to this hopefully being the final phase of treatment. (Hey PGHS alumni’s - don’t you think that Gerita Moreton, our 9th grade science teacher and the best b-ball coach ever, would be shocked to know I actually relayed all this info regarding the stem cells and even highlighted their scientific function?!?!?)

Richard on the BMT team had made us aware to the fact that the preservative they use in the freezing process will “smell” somewhat for a couple of days as it will be expelled thru Emma Grace’s lungs, hence her breath. Well, bless her little heart – that’s breath that only a Momma and Daddy could love! WHEW WEE!! For those of you who have spent any length of time around cattle, let us describe it as this. You know when cattle have been feeding on sweet feed or sweet spring clover? And they have the necessary process of burping and chewing their cud (because that’s what cattle do). Well, have you ever go a whiff of that?? Daddy & I finally decided that’s what our little angel’s new, but temporary, breath freshener is compared to. You got it – bovine breath!

Emma Grace hung in on the high dose chemo like a little trooper. She somehow managed to find some portion of the day to ride her favorite trike which is amazing all in itself. That is purely the strength of God protecting her little body to feel good at least once a day to get out of her room for cycling fun! When she was on the less active or feeling puny she wanted to be in either Momma or Daddy’s arms resting during the day. We have learned to snooze when Emma Grace snoozes for best results. The nurses commented and teased us several times that they would come in to do vitals and we would be “calling the hogs” with our snoring patterns!! Well, my pat answer for that remark is loyal Razorback fans can call those Hawgs even in our sleep!!! HAHAHA

Saturday was a treat for all the patients and parents of St Jude as the Shower of Stars Event was unbelievable. Being on the 4th floor, which is restricted, we were not sure if we would be able to meet any of the stars as Emma Grace nor any of the other patients on that floor would be able to leave. But, again God had it all worked out (as He always does.) Mr. Jim Carey – the crazy dude of crazy dudes – was our guest of the day. Robin Williams was also here but he was recovering from the flu and didn’t think he should venture our way. Let me tell you as we would never have guessed Jim Carey to be such a genuine, gentle and caring soul as he is as we would naturally stereotype him as being a NUT as he appears on the screen. He actually came to seem Emma Grace in her room as she wasn’t feeling well enough to be in the hallway. He literally knelt down by the chair Daddy was sitting in while holding our little angel the entire time he was in her room. He wanted to know all about her cancer, the treatment, where we were from – just visiting and learning all he could. I had dug out a copy of the picture of her massive lump that we came to St. Jude with in October and told him that he can tell all his friends with their thick pocketbooks that this picture tells you why it is so important to support St Jude. We told him that was what our little darling came her with but it wasn’t there anymore! I had put her info on the photo’s edge with a note at the top, “Thank you for supporting St Jude for me. XOXOXO, Emma Grace”. As we all have been with the miraculous results, Jim & his buddy Tom, were taken back as well just a the sight of the picture. Jim commented that these children’s character will become so enriched for these trials as well as enriching the character of the parents who have to endure such hardship in seeing their children battle so hard. We told him that God had brought us on this journey for a reason and we couldn’t say enough about the blessings He has given us here nor could we begin to say enough about St Jude being such a gift to us all. Emma Grace watched him intently as she stayed snuggled up to Daddy but did toy with him when he tried to get her “stinkin paci”. HA! He visited and played with each and every patient that wanted a visit. He told the St Jude staff that he had no time schedule or no where he needed to be, he was there for the children. He had a ball and believe me, the children were absolutely THRILLED!!! Of course, we got lots of pix and autographs – even one for “Bubba Eli”. Emma Grace doesn’t have a clue who he is now but one day we will get to share with her the story of a remarkable star that we had the opportunity to meet and who was concerned about her and her St Jude friends. He gave Momma a big hug – not one of those “let’s do lunch hugs” – but a very caring hug before he left our room. Knowing he missed the big gala event (at $10,000 a plate) in order to “see ALL the kids” as he put it should give you a whole new outlook on Jim Carey – the real person out of the camera’s flash. By the way, Jim ended up placing the picture of Emma Grace in the inside of his breast pocket before he left the room. What a guy!

All joking aside, we are very, very thankful God is SOOOOOO GOOD to give not only Emma Grace but her other St Jude siblings the gift of St. Jude. We can never begin to say enough about the journey He is taking us through. The unbelievable doctors, nurses and staff, again, the phenomenal technology that He has allowed these amazing minds to try and prove for the sake of our children and the other families that we have been so blessed by each and every day. Since the beginning of our St Jude journey, He has shown us so many fellow believers that also have sick children just like Emma Grace. We try to support each other along the way and you can be assured that if you’re down in the ditch, He sends someone to lend a hand of love & support. Even in trying to relay this to you now, I get stuck because the words just don’t come. It is absolutely overwhelming that not only has He provided us with the BEST family & friends, better known as “The Grace Team” but also He sent His “St Jude Family” to our aid as well. What a truly Awesome, AWESOME GOD HE IS!!!

Well, this is quite a long entry and believe it or not, there was more we probably should have said but will try to catch later. You all are the best and are absolute treasures to us. Your love, support and prayers leave us continually speechless as you touch our hearts more than you can ever know. Please continue to remember Emma Grace as these are “day by day” days ahead but one day soon “Praise Party Days” when this is all behind us. We love you and May His Love surround you daily!!

Only By His Grace – Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PS... Special Prayer Requests for some big days ahead for our little St Jude buddies & their families:
McKenzie Brewer – MRI results on Tuesday as she is post radiation treatment for her brain tumor – Pontine Glioma
Christal Reynolds– Shunt revision possibly more surgery next week as they do not think it is functioning properly. She finished with her last radiation treatment Saturday. They were intended to be home already but this speed bump has kept them with us alittle longer. Ependymoma – brain stem tumor
Brendle Overly, Friendship, TN– Rhabdomyomasarcoma (spelling?) New evaluations next week to make sure the new chemo & radiation is working as they had to recently revise her treatments due to new tumors showing up.
Sarah Claire Holder, Cleveland, MS– Post treatment MRI on May 1st to verify her Ependymoma is still gone!!
Karina Hurtado– ATRT (rare brain tumor). She starts her high dose chemo Thursday for stem cell rescue. (Different than Emma Grace’s protocol)
Bailey King – Leukemia, ALL. Returning for chemo Tuesday from Destin, FL
Ashley Garrett, Memphis, TN – Osteosarcoma – bone cancer. Finished with treatments – Post evaluations to verify the cancer is gone!!
And the rest of our St. Jude Families.

Here are the websites for little Christal Reynolds, 4 yrs old from Tampa, FL (http://christalinfo.servemp3.com) McKenzie Brewer, 9 yrs old from Prichard WV (www.caringbridge.org/wv/mckenzie ) , Karina Hurtado, 4 yrs old from Laurel, MD (www.caringbridge.org/md/karinahurtado) and Ashley Garrett, Memphis TN (www.caringbridge.org/tn/ashleygarrett ) . These are God’s little angels as well as their families that we have gotten quite attached to here while living at Uncle Ronnie’s house and in the halls of St Jude.

Friday, April 25, 2003 10:33 AM CDT

Greetings, Greetings & Hallelujah for the Sonshine!

Believe it or not, we have been attempting to update the website the past two nites and the connection has been down. Isn't it amazing how we depend on technology so??

Well, Emma Grace seems to be fairing pretty well with the high dose chemo. This ole stuff just knocks her tailfeathers in the dust by mid afternoon so we play while the "playing" is good. She only has one more treatment on Saturday morning with these high powered chemicals then will have her stem cell transplant on Monday - better known as "Day Zero". We start counting the days for her system to recover, stem cells to regenerate and graft in the bone marrow and the ANC will start to recover. They estimate about 18 days before it starts to move upward. She just started getting her dark smudge eyebrows & eyelashes back which we are sure the high dose will knock out again but that's ok, they'll be back to stay before too long.

She has been still with a small appetite - you guessed it - pancakes with peanut butter & syrup and a new one, GRITS! HA! That one really cracks me up as we're not sure she'd ever had grits before coming to Memphis. And Beetle Bailey will be happy to know she still has a hankerin for good ole vanilla ice cream ("white" as she calls it). She loves eating ice cream that Beetle makes. ;)

The ABR hearing test they did last week came by really good. Emma Grace did not sustain any further hearing loss from round #6 of chemo which she received the Cisplatin. The only loss is the high frequencies and the ranges that cover s, st and sh's which they felt she had a strong basis of those sounds which shouldn't cause any problems. That damage occurred with rounds 2 & 4 which do not require hearing aids. YIPPEE!!! We had another visit from the speech therapist yesterday who determined (I'm sure many of you will not be surprised to hear this...) that she is 1 yr and 2 mos ahead of her age. So she is at a 3yr 9 mos in her speech & vocabulary levels. Gee...go figure!! ha!!

I'm such a dork sometimes as I have meant to update you on the eye situation with my little brother, Chuck. After the continued testing, MRI, etc. they determined it is optic neuritis. The MRI showed no scarrin on the brain which says this is probably the first occurrence and if it should be MS, it may not present itself for 10-15 yrs. There are so many variables of MS it is just hard to say but they felt they had caught this very quickly and he is doing much better! Thank you for your extra prayers on Chuck's behalf. I know he is so relieved as we all are.

Well, have to share a angel blessing with you...Emma Grace wanted "skwambled eggs" last Thursday while we were with Dr. Hale, her BMT doc, trying to get info & consent forms signed. The whole time making her requests known to EVERYONE so once we were finished we left to treat her to Cracker Barrel. She walks in the door hollering for "skwambled eggs" telling the greeter at door, the cashier, the hostess - whoever would listen at this point! HA!! Well, to say the least, she ate her two eggs, my one egg, a biscut and half of the next order we had gotten her. The waitress was thrilled to see her so excited over "skwambled eggs". Well, she brought our ticket to the table and stated this was our receipt as our meal had been paid for already by a customer. Wow and we mean a humbled WOW. Of course, Momma cries and Daddy is speechless - Emma Grace is oblivious as she is still scarfing down eggs. We asked if it was a regular customer and would she be sure to tell them how very grateful we were for their generosity & kindness. The waitress says "I think he already knows." There are absolutely God's angels everywhere and it couldn't have been more timely with it being one of our last meals out of the hospital for awhile.

Well, St Jude is HOPPING and we mean, HOPPING as "Shower of the Stars" will arrive on Saturday. Marc Anthony, Al Green, Josh Groban & Robin Williams to name a few. They will be touring the hospital and then have a gala event that evening which is a fund raising program for our children. With Emma Grace being on the 4th BMT floor we are not sure how much of the activity we will be privy to but we have been told they will visit our floor. Momma will be ready! ha!

May God Bless you for all your kindness, support, love and continued prayers for Emma Grace and her St Jude "siblings". What little angels they all are and brave beyond words!! We have gotten quite attached to several who are just gonna have to come home with us! ha! How God has blessed our journey with such adorable folks! Ain't He Grand??? Take care and we love you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, April 22, 2003 2:30 PM CDT

Hello Grace Team & Spring has Sprung!!

Just a quick note to let you know that Emma Grace is now inpatient getting this phase of treatment underway. She has done very well with the outpatient chemo that started last Thursday - it only seem to start making her sapped by Sunday. Then Monday afternoon she was going strong. Guess she figured she had better soak up all the sunshine she could before she was confined to the penthouse suite at St Jude. ha! She will have Cyclo & Topotecan which started today that will continue until Saturday, Sunday is a rest day for her then the transplant of her stem cells is set for Monday.

Hope everyone had a lovely Easter Sunday. One of the dear families that we met at Uncle Ronnie's House, Christal Reynolds, mom Chris, s.dad Drew and Grandma Lois, had asked us to go to worship service with them. So we decided that we would go to Bellevue Baptist with Bro. Adrian Rogers at the pulpit. Let us tell you what a blessing that was! The church is HUGE and absolutely gorgeous and I'm guessing there were about 10-12K in the 11:00 service we were in. The most amazing part to us was that Bro Rogers didn't care if there were a 10 folks or a crowd of 10K, he shucked the corn as Bro Grant would put it. Bro Rogers preaches the word and leaves the formalities aside. It was wonderful! Little Christal and her family is from Tampa, FL and will be going home this Saturday. Another fellow christian placed in our paths that we will treasure a lifetime.

Emma Grace was not "in" on the Easter festivities at Uncle Ronnie's house as the hosts were in costume - The Easter Bunny of course, Scooby Doo, Winnie the Pooh, Tigger, Sponge Bob, and there were more but to say the least we were not able to stay. She just is still afraid of the "dress up" folks and heaven forbid a clown shows up for fun! YIKES!! Oh well, she got brave and watched from afar in our room on the second floor. That was close enough for her! HA!!

Many best wishes to you all and we appreciate your continued prayers for Emma Grace as well as her St Jude friends. This is considered the "long haul" phase of her treatment so we are just faithful everything will go well with minimal complications. We love you all and are so thankful for you daily. What strong arms of support you are to us! May God Bless!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Thursday, April 17, 2003 12:04 AM CDT

Hello Grace Team!! A Joyous "He Is Risen" to All!!

What gorgeous weather for Emma Grace (and Momma & Daddy) to be out of the hospital and have we sure enjoyed being out!! Emma Grace keeps improving with each day which is wonderful as that can only benefit her being as strong as she can be prior to her chemo, then transplant. She did another bone marrow harvest on Monday and did very well. They were able to complete the quanity required for infusion on the 28th. Also, we have been on the go this week with the many appointments necessary to clear her to proceed to the transplant phase. She started her outpatient chemo this morning which is an infusion that lasts about an hour then we are pretty much free for the rest of day unless other appointments are scheduled. This chemo is Topotecan which is expected to make her pretty puny. Once she goes inpatient on April 21st, they will start Cyclo & Topotecan on Wednesday. This will be the start of what's considered "high dose". All is go and we are just wrapping her in an abundance of prayer for her continued strength and asking for a HUGE hedge of protection during the next phase of transplant.

As we have mentioned many times before (and you know we're gonna say it again...ha!) the many blessings God has given is just fills our cup beyond words. Especially that He has provided such an overwhelming, generous and loving support team that is tireless in their power prayers! And you know, He always sends just what we need WHEN we need it the most - not when WE think we need something. It seems this stay in Memphis has lingered longer than we expected and is going to be even longer as next phase is getting underway. Regardless, it is necessary to get our baby well. Well, we said all that to say this - Last Saturday, Nurse Ashley - who is just an absolute sweetheart that has been "above & beyond" since our first week at St Jude - came to get Emma Grace that morning for Girlz Day Out. AND Momma & Daddy had a day for themselves. The Girlz hit every fun spot you could imagine and HAD A BLAST!! Daddy & Momma decided a day at the Drag Races would be fun as the Super Chevy Show was in Millington. (Daddy Barney is the only man I know that goes to the Super Chevy Show and buys a Ford F-Series hat! HA! That's my man!!) Needless to say, a GRAND day was had by all!! And what a blessing as God knew we all needed just to have a day to rest, not worry about a single thing and just enjoy!! We have been so thankful for extraordinary care we have received at St Jude and have become attached to many of the nurses there as each and every one are awesome!

We had church at home again this week via the speaker phone and long distance technology. What a wonderful service and the sermon was just what HE ordered...."Grace for the Task". We all needed the reminding that His Grace is completely sufficient for all our needs. And what an Awesome God to provide such grace even though we deserve nothing. That's the unconditional love that we cannot even comprehend with our earthly minds but how grateful we are that He loves us so much that He understands we don't have a clue how truly marvelous He is. One of these days we will be able to see things in a more clear Light and understand. Thank you Lord, for loving us so much that You sent Your Son to the cross that He did not deserve. And You did that all for us - that's true unconditional love.

Emma Grace has sure been having such a great time with her St Jude Siblings at Ronald's House - playing, crafting and just having fun being a kid. Nothing like the sound of laughter out of the hearts of babes!! Just God's greatest music hear on earth!!

We have a special prayer request from the Grace Team Prayer Warriors. We found out this week that my little brother, Chuck, 35 yrs old, is having difficulty with vision in his right eye. Evidentally, he is unable to see anything but "grey line" with the lower half of his vision field in that eye. He had an MRI completed yesterday and should have the results today sometime. There are a couple of preliminary considerations - arthritis of the optic nerve or possibly early symptoms of MS. I am not sure if they are "guarding" us with info at this point as to the severity of his condition or we are in hopes it is just they aren't for sure yet. Our Chuck sure needs your prayers and we know God knows all about this as it is under control. His Control - who could ask for more? We love you all and thank you so much for your continued prayers for our little angel Emma Grace, Uncle Chuck and our St Jude Family. May God Bless!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Friday, April 11, 2003 11:15 AM CDT

Hello & Happy Friday Crew!!

Emma Grace is doing MUCH MUCH better!! Thank you so much for the extra dose of prayers!! The testing for her tummy problems show no obstruction!! HALLELUJAH!! She is just having post surgery tummy pains which are also much better. After being rehydrated on Wed nite we had already seen the improvement. Yesterday we kept her pretty active after her scans & xrays and by afternoon she was strolling the halls on her favorite trike again!! ha! We just had a speed bump that God has taken care of and Momma & Daddy are gratefully relieved that this episode leaves with all with a sighs & smiles. The docs have cleared her to be released this afternoon as she has tolerated eating regular foods again with no problems. Yeah! So, Uncle Ronnie's house here we come!!

Emma Grace, as of Wednesday, now has a schedule for the bone marrow transplant. There are several tests, scans, etc to get the pre-evaluations complete for the transplant team between now and April 21st as that is the date Emma Grace will be admitted to the 4th floor with the transplant being set for April 28th. So, things are going very quickly now but that is ok. We are thankful the next phase is getting underway. She will have another bone marrow harvest on Monday morning as they need to collect more to have the needed amount for transplant. So, say alittle prayer for her being in surgery again and for her speedy recovery from this procedure. Once she is admitted to the 4th floor on April 21st, she should be inpatient for 4-6 wks. The high dose chemo will begin then and run for five consecutive days then the transplant on the 28th. Then we wait while the stem cells are grafting to regenerate all new, cancer-free cells. That is why the hospital stay is so lengthy as she will not have an immune system at that time. Lots of new travels in her near future but we are faithful this is getting us closer to the complete miracle.

St Jude has a special week called Nursing Care Team Week that is dedicated to the tremendous nursing team that are the heartbeat of this hospital. We understand the full week is filled with extra pamperings, acknowledgements, etc for these very dear folks with a banquet / dinner at the end of the week. One of the festivities is a video featuring the nurses caring & playing with our children. These folks take our children under wing and steal Momma & Daddy's hearts as well. Yesterday, Emma Grace was one of the patients captured on film with some of the nurses and other patients so she will be on the "feature film" during this banquet. Our dear friend/cousin, Nancy, who you all know especially by the forwards of email, will also be a "star attraction" on the video. Nancy wrote a wonderfully touching song called, "Do You Know How Much" a few years back that we felt has a true St Jude attitude especially in respect to the nurse team - patient relationships. They have decided to use Nancy's song in this video as well which is such a tribute to her talent God has so richly gifted her with. Way to go Nancy!! And you know we cannot say enough about the blessings this nursing team brings to our family. They are certainly dedicated to their mission of giving our children their very best, no matter what and WHATEVER IT TAKES! Thanks Team!!

Well, we all know the hills and valleys are sure to come no matter what our situations and we are so thankful God has everything under control with extra doses of strength, mercy & grace ready when we need them most. Again, we are grateful for your continued prayers as we lean on your "direct lines to the Throne" daily. We love you and May God Bless!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

FYI - Here is Eli's new email addy: smile9255@aol.com He has been such a little man through this whole ordeal and we pray for his continued strength as this next phase is going to keep us from home for quite a while longer. Thanks Crew!

Tuesday, April 8, 2003 3:35 PM CDT

Hey Crew! Sorry for the delay in updating on Miss Emma Grace. Daddy has been relaying to us the messages the past few days as Emma Grace has not wished for Momma to be out of arms' reach much less go check email and update the website. Daddy said "I'd rather you do the update." ha!

Emma Grace got out of the hospital on Saturday morning as she had done all the necessary "chores" of being let go from the hospital after surgery. Daddy & I were loading the truck with stuff from our week's stay inpatient and went back in to get Emma Grace who was waiting with Eli, Nanna & Aunt Judy. EMMA GRACE WAS RIDING A TRIKE!!! We could not believe it!! When people tell you that kids bounce back so much more quickly than adults, well, there you have it!! She seems doing pretty well with the recovery process ... she thinks she should be strolling in high gear as before surgery so it's an adjustment for her to be alittle more "low key". We look at her and think "wow! only a week after surgery and she's up, about and still riding a trike on occassion!" Daddy & I would still be in the hospital, flat of our backs and hitting the nurse button for more meds!!! She does tire more quickly but rest is just what is ordered for her continued healing.

We are back "home" at Ronald's house and have been staying pretty close to the room, venturing to play for an hour or so around meal time. She's starting to get alittle "spunk" back in her swing and the incision site is really doing well which makes her more mobile.

Dr. Davidoff said after her clinic followup Monday that she is doing very well and he is very pleased with her progress. She is having a few tummy cramps from the digestive tract not being fully functional yet but he said those are the last things to "wake up". She has made it much better today and we pray for the continued improvement.

Well, today marks 9 weeks of staying at Uncle Ronnie's House this trip around. WOW!! That's a whole SEMESTER!! We are not sure what the dates are for bone marrow transplant as Dr. Santana, Dr. Davidoff and the Transplant Team are putting their heads together on getting the next phase underway. We should know something hopefully tomorrow. It would not be surprising for us to stay here until after the transplant is complete. Just have to wait and see. Speaking of staying at Uncle Ronnie's, we have become acquainted with some very dear families - some who are leaving our little circle soon - and we just ask that you remember these families in your prayers if you don't mind. You know, God always sends just the right folks in our path from which we can fellowship, laugh, cry and most of all love. Everyone is here for the same reason as we are and it is quite an experience filled with heartbreaks and blessings of which can only be described by the heart.

Grace Team, you are absolutely the best!! We are so grateful for your continued prayers as the strength we gain from our fellow Christians is unbelievable. One can never know what they are capable of doing until you have to do it. Without God's Hand leading us through, it would just be far past unbearable. How marvelous His grace and mercies are!! Thank you for being there for us to lean on and taking our burdens to the Throne! We love you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Psalm 46:10 NIV "Be still, and know that I am God."

Thursday, April 3, 2003 3:50 PM CST

Greetings, Greetings, Greetings!!

Just to let you know that Emma Grace is doing very well - still quite sore but has just been a little trooper. She's still in ICU but hopefully, will move to a regular room this evening or possibly in the morning. Today the docs took out the epideral line, the Foley cath, and the NG tube which was keeping her tummy clear. Seems the tummy and bowels are "rumbling" which are very good signs they are waking up from surgery now. Hopefully, she will be rid of the O2 today as well. They felt when the NG tube came out of her nose it would help with her O2 saturation. She sure is tickled to get rid of it as it bugged her the most.

Emma Grace sat in her Daddy's lap yesterday for over an hour and had her first stroll down the hall and back this afternoon. Momma finally got to hold her after her little walk today and the words just don't come of how I felt getting to hold my baby after 3 days. She is starting to feel like herself again it is just slower than she would like. I'm amazed she has done so much as her Daddy and I both would still be horizontal. She's sure a tough little girl with lots of grit. Oh, would it surprise you she started asking for peanut butter last night?!?!? Not quite ready for that yet but it will be soon. Before we know it she will be back to strolling the halls and Ronald's house on her trike at a high rate of speed.

We are so grateful for your many prayers as God is certainly holding our baby girl close to His heart and healing her little body. How marvelous He is and we are ceased to be amazed at His continous, wonderous grace. May God Bless! We Love You!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

ADD'L UPDATE AS OF FRIDAY, APRIL 4TH!!Subject: GREAT NEWS FROM EMMA GRACE!!!

Dr. Davidoff, Emma Grace's chief surgeon, just left the room about 3 pm with REMARKABLE NEWS!!! The pathology report had taken longer than Dr. Davidoff had expected and for obviously good reason. When he consulted the pathologist this afternoon, they stated the testing took longer than normal for report as "they had a difficult time in finding any live cancer cells in the tumor & subsequent lymph nodes". AMEN!! AMEN!! AMEN!! Dr. Davidoff said that this is very good news as the chemo did what it was supposed to do. They did find few live cells but it was not without extensive testing and retesting and it became apparent to us that this is out of the normal by Dr. Davidoff's being as pleased with this report as we are. That is nothing but God's miraculous hand at work and His taking care of business!!

Emma Grace had to proudly show Dr. Davidoff her new incision and stated "you took out my tumor". He agreed with her and she told him in the most unprovoked, sweet manner "thank you". Daddy and I could not have said it better. Don't you know that Dr. Davidoff left the room knowing he had just been thanked from the purest heart of our babe. What a moment for us all!

We love you and had to share His good news of continued blessings on our little angel! May God Bless You!!

Tuesday, April 1, 2003 1:03 AM CST

Greetings Grace Team!

We had full intentions of having an update out much sooner than this as we know you have been awaiting the news. Sorry ... but somehow what felt to be one of life's longest days while waiting for surgery to be complete suddenly the time buzzed by and it was midnite before we knew it!!

THE TUMOR IS GONE!!!! HALLELUJAH, PRAISE GOD!!! Dr. Davidoff was very encouraged that he was able to remove ALL of it. She went under anesthesia at 10:05a with a kiss from Momma as she slept. The nurses in OR kept us updated every hour as to the progress and said the surgery actually started at 11:05a. By 4:30p they we finishing up and we saw Dr. Davidoff around 5pm. They were very close in their calculations as it lasted 6 1/2 hrs. Dr. Davidoff said the tumor was complexly wrapped around the adrenal vessel which is off the aorta and was even attached slightly to it as well. He was able to delicately remove it as we cannot even imagine how tedious it must have been. The left adrenal gland was removed as this was the origin of the tumor but said the left kidney looks to be fine. They removed several lymph nodes along with the tumor and the pathology results should be back by Wednesday. Daddy & I were able to go see our little brave angel around 5:30 and she looks really good. She has a few extra tubes, IV's, etc but those are just custom accessories which we knew she would need for now ... but she's minus that stinkin' tumor!! We'll take that trade anyday. They still expect that she should be in ICU for at least two days. The ICU team is working with her constantly and keeping her comfortable. We've seen those blue eyes several times and heard that sweet little voice in between pain-med naps! Talk about music to your heart!!

We have had the entire surgery waiting room full for the entire day, most of the evening and we are all SO SO thankful for the much awaited news. Now, how do you let out a good ole Arkie WHOOPIN AMEN!! over the net??? Yes, we're worn from the day but revived with God's marvelous works!!! Your prayers have been funneling through to the OR room with Emma Grace and the waiting room with us all day! What an amazing prayer team you are!!

Thank you all so much for your continuous prayers!! You are the best and we just cannot thank you enough. What a wonderful, loving God!! We love you and May God Bless!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney, Momma Trish, Nanna, Poppa, Uncle Chuck & Kellye, Granny, Grandpa, Uncle Marvin, Aunt Lee, Cuzzin Linnie, Aunt Bev and Bro Grant

1 Chronicles 16:31 "Let the heavens rejoice, let the earth be glad; let them say among the nations, "The LORD reigns!"

Sunday, March 30, 2003 1:38 AM CST

Good Sonday Mornin' Grace Team!

Yes! Yes! YES!! We were able to come HOME-HOME Thursday evening for a brief stay at our "weekend get-a-way"!! How wonderful to be home!! As short as it may be ... we'll take it!! Emma Grace was so excited on the way home that she stayed awake until Alma so she could see her Bubba! She sacked out before we arrived at Nanna & Poppa's to get Bubba but hit the floor a-runnin' come Friday morning even rose early enough to see Bubba off to school. We have to be back at St Jude Sunday evening for labwork to prepare for Monday's surgery. But it was just what the Doctor ordered coming home!!

Everything is still a "go" for surgery Monday morning at 9:30. Emma Grace's platelet count, hemoglobin, white blood cells, etc all have seemed to recover very well. We are praying for God to lead, guide and direct Dr. Davidoff and the surgery team as God is in complete and full control. Dr. Davidoff seemed to think she would need to be in ICU for about 48 hrs. We know the prayers have already started on her behalf and we are so grateful for your faithfulness and support. This is obviously nothing Daddy & I are looking forward to so we will certainly will be relieved when it is over. We are just determined for this nasty, vile tumor to be gone and her little body being completely healed.

We have been on the go since landing back home which has been great for everyone --- keeping busy seems to be therapeutic. Besides, Emma Grace was able to go see Susan & Megan along with her little buddies Cameron, Camden, Gunnar and Cody. I think she made a grand effort to catch up on lots of hugs. We had dinner with Beetle, Helen & Susie Q Friday night, visited Saturday with Darlene, Denise & Lumpy (better known as "Wumpy" to Emma Grace) and early Easter dinner at Aunt Judy's on Saturday night. Needless to say, we have had LOTS of good ole home cookin but best of all fellowship which we have missed tremendously. How we would love to have made rounds to see everyone but as always these days, time just didn't allow. We are getting to worship with our church family later this morning which we are really looking forward to huggin some more necks we have missed. We still have been attending services via the speaker phone with our home church and we are so thankful for technology but there is nothing like being there!

We added some new pix to her website (new hairdo!) and also, we will continue to list our current phone numbers on the main page. Probably will not have hospital number until we are moved into a regular room.

We will be sure to let you know as soon as we can of how remarkable we are anticipating the surgery to be. We are continously thankful for you, our friends, who are so gracious to lift us up in your prayers. Bubba Eli will be returning with us so please say an extra prayer for him as we know this will be a time when he really has to be a strong, big brother. May God Bless and We Love You!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish www.caringbridge.org/ar/emmagrace

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16 NIV

Wednesday, March 26, 2003 4:06 PM CST

Howdy Do Crew!

Just a note hoping your day is full of lots of Sonshine! What beautiful weather the Lord has sent our way! Soon we will be able to kick our shoes off and walk in the grass barefooted!

Yes...we are still guests of Ronald's house...7 weeks and counting. ha! Seriously, we are so very thankful for our home-away-from-home. We continue to meet new families and the support of other families being in the same boat we are in makes it alittle easier being away from home. Now, don't think for a second if we get the chance to come home-home for a couple three days, that we're not heading west. The big red truck will be loaded in a skinny minute when Doc says go!

Emma Grace's little buddy, Karina from Maryland, went home this morning until April 23rd. She just finished her radiation treatment and gets a break before chemo starts. Those two would fuss & feud like sisters but were constantly wanting the other one when they were apart. HA We are already missing Karina and Momma, Marci, and are looking forward to seeing them again. We are glad for them they were able to go home for awhile as they needed it. Little Spencer is doing very well since his surgery last week in fact was out of the hospital by Friday - blowing and going as normal.

Emma Grace is doing very well after her bone marrow harvesting last Friday. She was pretty stiff & sore but is improving with every day. Dr. Hale said that if an adult goes throught the same procedure, they would be in a wheelchair for 3-4 days. Amazing, she was walking - slow, but walking - that very evening.

We meet with Dr. Davidoff, the surgeon removing the tumor, tomorrow at 1pm to get all the i's dotted and t's crossed before surgery on Monday, March 31st at 9:30am. He had earlier stated that it would probably be 6-7 hrs and if they get finished earlier then all the better for everyone. Daddy & I are getting a bit more "anxious" for Emma Grace to have to go through this ordeal but will be glad for it to be over. Bottom line is we want the tumor out and pray that it leaves nothing hidden in the "dark alleys" that will rear its ugly head at a later date. We pray continously for the miracle of healing in her little body and now we just flat rebuke it from appearing again.

We had hoped to have pictures online with Emma Grace's latest hairstyle but Ronald's house isn't equipped with a scanner so I will have to try to do it at home soon. Can't wait for you to see it ... does Telly Savalas give you a hint?? It is adorable even though Momma was the most resistent to giving in to her having it shaved off. But she only had about 52 hairs total left so it was time and Momma was glad she gave in. ;) Then Daddy had to get a buzz haircut to keep in style with Emma Grace...Momma drew the line on getting her's buzzed! HAHAHA

Well, we will be in touch soon. Thank you for your continued prayers which we always feel picking us up especially when times are not so rosey. We also appreciate your remembering Emma Grace's St Jude families in your prayers. He always is sending a fellow christian in our path which are so thankful for His blessings. God has truly blessed us with the finest prayer warriors / friends in the land and what treasures you are to us. We love you & Enjoy the Sonshine!!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Special Request: We would ask you remember Emma Grace at 9:30a Monday, March 31st and for the knowledge and direction of the surgery team caring for our baby during the course of her surgery and for her comfort in recovering. Thanks Grace Team! We love you!

Friday, March 21, 2003 4:03 PM CST

Good Day to All!

Well, as we are sure you are shocked to receive another update so quickly.... but we just wanted to give you the quick scoop. Emma Grace had her bone marrow harvesting done this morning about 7:45. Dr. Hale said they were only able to retrieve about 3/4 of what they need for the transplant so she will have to have another harvest done about 5-7 days after her tumor surgery is done. They needed about 200cc and were only able to collect about 150cc. We hate this for her as this isn't a very comfortable procedure. But we just pray for quick recovery from God's healing hand. This is just a "road bump" in that journey God is "driving the bus" so He knows all the detours as the compass is in His hands.

She is receiving platelets and blood as we speak to help give her a boost. Her primary tumor surgery is still on schedule for March 31st as far as we know. Of course, we will update you for any changes.

We love you all and appreciate your continued prayers & friendship more than you know. You are just the best!! May God bless!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Thursday, March 20, 2003 12:46 AM CST

Hello, Hello, and HELLO!!!

Gosh, it has been a whole week since update...sorry for the delay!! It is not as convenient to update from Ronald's house as the computer room closes at 9pm. So, again we apologize for the delay in updating.

Well, here's the latest... First of all, we received reports from all the scans/tests done last week and they were very good! The bone scan shows only hot spots where she still has teeth forming to come in, the CT scan shows the once horrific sized tumor as now being 3.1 x 1.4 cm (we invision that as being about the size of a walnut) and the MRI clear. She had the bone marrow aspiration done on Monday which also is clear with bone marrow harvesting scheduled for 7:30 Friday morning. WHEW!! AND AMEN!! What marvelous works God is performing on our little angel and it just leaves us breathless at His mercies and grace. We are so thankful for the miracle we are seeing right before our eyes.

Emma Grace's bone marrow harvesting surgery is anticipated to take about 45 mins to 1 hr and they stated she would be sore for a couple of days after it is completed. We know this is part of her miracle steps necessary to get her completely healed. Please pray this procedure will be as comfortable as possible on her little body. These children are unbelievable to their resiliency and rebounding so quickly.

The surgery to remove what is left of the tumor is scheduled for March 31st providing her platelets are above 100,000 which we pray they will continue to rise. We visited with her surgeon on Monday, Dr. Davidoff ... really nice gentleman and we were very impressed with him. We have heard nothing but wonderful things about him and are so thankful God placed him in Emma Grace's treatment team. He anticipates her surgery to be 6-7 hrs as they will also be removing lymph nodes as well as the tumor. He stated it is a very tedious surgery due to the major arteries and blood vessels surrounding the tumor. We are wrapping these doctors, nurses and staff in blankets of prayer to make this surgery as easy as possible and successful to remove all the tumor, which they felt could be accomplished. We dread Emma Grace having to go through any of this but we are leaving it in God's hands as He is the director of everything. So I am sure He has the OR under His direction as well.

ELI IS HERE!!! Nanna & Millie came in with our little man yesterday and boy 'o boy! Were we thrilled to see his smiling face. You can imagine Emma Grace didn't let go of his neck for a good 10 mins!! He & Barney got to go to the NBA game of Memphis Grizzlies last night. What a treat for both of them!!

Our buddy, Mr. Spencer, had his surgery on Tuesday which was a huge success. They were able to remove ALL the cyst that was growing and placing pressure on the tumor. YEAH!!
He was already in a regular room by yesterday afternoon and should be released, yes released, this afternoon. What a little trooper he is. I was mistaken in the number of surgeries this little man has endured. It was not #6 this was #9. We pray for his continued healing and what a blessing he is to everyone he meets.

We are so thankful for the many families we have been so blessed to fellowship with at Ronald's house. Emma Grace has a new buddy, Karina who is 3 from Maryland. The girls have a ball playing together and "fuss" like sisters. HA!
But when they are apart they are continously asking for the other. HAHAHA! Her mom, Marci and I just sit back and laugh. We are so thankful for the friends God has been so gracious to bless us with. It makes our journey so much more easier to share, vent and shout joy for the victories. We have been at Ronald's for six weeks now and we are convinced it is so we can lean on and learn from so many other dear families that are going through the same thing we are. And the best thing ... God had this all planned out long before we had a clue!! How awesome He is!

Well, obviously we are on pins & needles for the upcoming surgeries and we ask for your prayers for her comfort and healing. We miss you all and trust all is well with everyone. You cannot know what strength we gain from you through your faithful prayers on our behalf. We love you and cherish your friendship!!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Pray for our President for God's direction in the war and for our troops who are faithfully fighting for our freedom!

Thursday, March 13, 2003 5:39 PM CST

Howdy Everyone!

Well, I know that you will be amazed in receiving two updates in two days but just a note to give you the scoop. We had great hopes of getting to go home for a couple of days after Emma Grace had her labwork this morning. Much to our disappointment, her ANC is still at 100, platelets at 9,000, and her hemoglobin 7.2. All of which are too low so we are getting transfusions as we speak and not getting to sneak home afterall. But you know, this is what we are supposed to do ... what's best for Emma Grace, so that's what we have to do...period.

In our obvious state of disappointment (which is really translated as homesickness,), I head downstairs to head over to St Jude for transfusions. Barney met me at the door to motion that things are not good for Emma Grace's dear little buddy we have met at Ronald's house named Spencer. Mr. Spencer is a little gentleman who is 4 yrs old with a brain tumor. He may be just 4 but seems 24, such a charmer and always wants to give you a hug and tell you he loves you. Spencer's dad, John, just received a call from St Jude that there is still a tumor showing up on his MRI which was once thought to be fluid. Again, this is the last thing any of us want to hear. Mr. Spencer and family certainly need our prayers as they have some very difficult decisions in the near future as surgery is very probable. We pray that God's healing hand will touch this little man's body.

Our hearts are broken for Spencer, as well as many of the other friends we have met that are not doing as well as expected. In the midst of "things not going exactly as Momma Trish had planned for this Thursday", we are reminded that there are families who have alot more to worry about than these minor disappointments which are minimal in comparison. It isn't always easy, and as grateful as we are that St Jude is here and most of all, that God has provided beyond what we could imagine ... it's just not easy. Once again we will say that we have learned far more about cancer than we ever hoped to know. "God never promised us a perfect life, only His perfect love." And we are so thankful His love surrounds us in every situation, especially when we are down.

We are so thankful God has provided faithful friends to share our burdens, our joys and most of all His love. Thank you for being there as you cannot know how we treasure you, we thank God each and every day you are there for us and for your continued, faithful prayers. We love you!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, March 12, 2003 3:11 PM CST

Hello Everyone! So sorry for the delay in updating ...

Yes, we are still in Memphis @ Ronald's house while we are having our scans, xrays, tests, etc. completed this week. In fact, as we speak, Emma Grace is getting her MRI done which is the last evaluation of the week. Can you believe it ... we have not run fever or been back into the hospital!! Historically speaking, we have always run fever after chemo when our ANC bottoms out but this time we have been in the clear. Of course, we stayed in Memphis with anticipation of fever!! ha!! Her ANC was up to 100 on Monday and judging by her appetite it is still on the rise. Also, her bone marrow aspirate was post-poned until Monday, Mar 17th as her ANC is recovering and her platelets were just 35,000. They are on the rise as well but Dr. Santana wants to have a good bone marrow result which will require her immune system to be strong.

We still do not have an exact date for surgery as Dr. Davidoff is out of town this week and we are scheduled for an appointment Monday afternoon. The nearest estimation of a date for surgery by his nurse is later part of next week or first part of the next. So sometime between March 20th to March 25th?? That's about all we know at this point. We have to remind ourselves about being patient which is sometimes much easier said than done. BUT we had bone scan on Monday, CT Scan on Tuesday - of which Emma Grace did with no sedation and plainly stated while climbing on the CT table, "Daddy, watch this!!" and then MRI today. So the week has been full of accomplishments and the faith of great results.

Needless to say, we are a bit homesick but have had the opportunity to meet and visit with other families. Everyone has their own story and just as God made each one of us so very different, so are our stories. We met Brendle, 7 yrs & her mom, Janet when we first came to St Jude back in October and they are staying at Ronald's again with us. As well as Garrett, 2 yrs, his mom & dad, Christy & Tony, who we met on the first big trip here. So, we are bunking with some of the old crew that we became accustomed to seeing every day. It's like coming back home-away-from-home again. Brendle has rhabdomyosarcoma which is cancer that develops from muscle cells and Garrett is an ALL, Leukemia patient. Brendle and her family really need our prayers as they have hit a road bump with her treatment. She has cancer cells in her spine that have started growing which is a new area from the initial diagnosis. Brendle is back inpatient and they are readjusting her meds for treatment. This is not what any of us want to hear, so they definitely need our prayers for God's healing and strength.

Thank you for your continued prayers for Emma Grace and her friends. We love you and will keep you updated as we know what's next! What a blessing you are to us!!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Friday, March 7, 2003 8:18 PM CST

Warm, Springish Greetings to All!!

Wow! How wonderful the weather has been today!! They are calling for the low 70's for Saturday. What a nice break we all have needed from the cold weather!

Emma Grace is doing very well ... and has kept fever at bay so far which means we are still at the Ronald McDonald house. Bless her heart - the hair is getting thinner and we have all of two eyelashes left. She sure looks different but still going strong. That's ok - they'll grow back, it's just all part of the steps of getting better.

We are certainly anxious to have the follow-up tests completed Monday, Tuesday and Wednesday and especially, to visit with the surgeon to find out when the next step of surgery is scheduled. It is always nice to have a change of scenery from being in the hospital but it sure makes time run a bit slower in anticipation not to mention make us alittle more homesick. Tuesday will be five weeks and we are so thankful we came home two weekends ago for a weekend visit. I think we needed an "Eli Fix" as much as he needed an "Emma Grace Fix". (Momma & Daddy have learned to be secondary in the lineup. ha!) Bubba Note: Eli is playing in basketball tourney at Gravette this week and called us so EXCITED about his game Tuesday nite. He scored 3 pts. (career high .. ha) and 20, that's right, TWENTY! rebounds!! WOW!!! I'm quite certain the rebound count beats anything his squatty ole Momma ever did!! HAHAHA They won their ballgame and go back again Friday (that's today eh?) for another round. Can't wait to hear how they faired.

We trust this note finds everyone doing well and our best wishes to everyone. We will update you as soon as we know about the scheduled plans. Thank you for continued prayers. God continues to bless in everything and what a miracle He is working not only in Emma Grace's life but so many others in our St Jude family. How truly awesome He is!
We love you and thank God for you daily!

Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, March 4, 2003 12:16 AM CST

Happy Fat Tuesday Everyone!! And believe you me, the Mardi Gras festivities are a plenty here at St Jude!!! The bubbles, horns, confetti, parades and more horns met us first thing as we came into the main entrance of St Jude. Better wake up than a good dose of strong coffee! ha!!

WE ARE DONE WITH CHEMO!!!!! YEAH!!!! Friday was our last day and we are so thankful!! Emma Grace is doing pretty good ... just alittle ill but such a little trooper in spite of being puny.

We had a clinic appointment yesterday and it was decided that since Emma Grace has all of her post chemo scans, xrays, tests, etc scheduled already for next Monday, we need to stay in Memphis as she will more than likely be running fever with ANC at zero by Wednesday or Thursday and we will be back inpatient. They wanted to keep us close to "home" (Memphis-home) as she will still be able to do the tests starting Monday thru Wednesday with her ANC on the recovery. So, we are very thankful we slipped home weekend before last for a brief visit.

Emma Grace got out of hospital on Saturday about 3:30pm and we threw a weekend bag together to head for Cleveland, MS to see Sarah Claire and her family. We had a wonderful time visiting with them and had an extra special blessing of getting to worship with them Sunday at their church. They are like family to us and continue to be such an inspiration. We met them the second day we were at St Jude and little Sarah Claire stole our hearts - as did MiMi Sharon & Momma Monica. We felt like we had run into old friends. It was the Lord placing His family - our family - in our path to give us the encouragement and support we needed and has blessed the friendship to grow. Sarah Claire is doing wonderful and God has placed His healing hand on her. Another one of His miracles! Amen and AMEN!!

We trust everyone is doing well and we thank you for your continued prayers for Emma Grace. We have the first phase behind us now and will be doing surgery sometime in March? We should know next week what the game plan is. We sure miss everyone, we love you all and you cannot know what blessings you are to us each and every day!! Thank you again and May God Bless!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, February 26, 2003 8:31 PM CST

Hello Grace Team!

Emma Grace is sliding right through this final round of chemo. Only two more days left!! Yeah!! The nurses are planning a "No Mo Chemo Party" for Friday which they do for all the kiddos. Wow, it seems so long ago we started chemo but in reality it has only been since October! Four months seemed to slip by pretty quickly...more like a whirlwind. God has surely blessed!!

We are not sure when we are going to be coming back home, could be the weekend or after clinic appointment on Monday. Just have to wait and see.

Our dear little friend, Sarah Claire, (better known as Sarah Cware to Emma Grace) finished her last round of radiation last Friday and moved home on Tuesday. They are only scheduled to be back for check ups now. Mom, Monica, said it would certainly be quite an adjustment not having to be here routinely. We are sure going to miss them not being here with us so often but are so thankful the Lord has blessed them with such miraculous results. They are such a wonderful, faithful family that we have gotten very attached to during our stay here. We are so thankful God placed them in our paths as they are such an inspiration to everyone they come in contact.

We trust this note finds everyone doing well and we pray the weather is being kind to you all. We love you and are so thankful for the Lord blessing us with you! Thank you for your continued prayers for Emma Grace and the rest of our St. Jude family.

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Sunday, February 23, 2003 7:04 AM CST

Good Sonday Morning, Grace Team!

Just a quick note to let you know what's up with Miss Emma Grace. The stem cell harvesting has been put off for now as of last Thursday. The cell count was slowly climbing on Wednesday but made a u-turn on Thursday so they decided to harvest at a later date. We were planning to start chemo on Friday but her platelet count was still recovering so Dr. Santana gave us the "weekend off". Give you three guesses where we headed ... you got it, HOME-HOME!! We grabbed a change or two from Ronald's house and headed the big red truck west!! We got in Friday evening around 6:30 and are scheduled to be back at St. Jude for labwork Sunday nite. There was a little brown-eyed boy named "Bubba" running to the truck ready to see his little sis ... ( I think he also missed Momma & Daddy as much as we had missed him. ) You know Emma Grace was thrilled to jump in Bubba's arms! Even if it was home for just two days - it was sure worth it to see those two squeal for each other - besides, we all needed a "fix".

Well, so now the game plan is to hopefully, start chemo on Monday if the platelets have recouped. This is Emma Grace's last round of the chemo!! WOW!! Then she should have surgery the middle of March (?). Not sure but you know we'll update you as soon as we get the details. We feel the St Jude Team concluded that too much info too quick overloads our comprehensions. It's like Dr. Santana told us from the very start, "we'll discuss that when we get closer to it." Smart man as there are certainly days we need directions to the cafeteria. HA! As history has proven it isn't wise to plan too far ahead as things can surely change before you know it.

We've some incredible pictures to share with you that we will caption "The Mighty Power of Prayer". We actually took pictures of Emma Grace on Oct 10, 2002 prior to leaving for the appointment of her results from CT Scan. I think for some reason I had in my mind "it would be fixed soon" (before we came back home?) and we would need pictures to recall how very large this obtrussion had grown from her side. But we all know too well things didn't go as Momma had plan. ANYWAY.... Here are some before diagnosis pictures and recent pictures taken during round #4 of chemo, the week of Dec 30th, 2002. Trust me when I say, we know the "before" pix are hard to look at BUT the amazing presence of God's healing Hand overshadows everything!! And how very, very thankful we are to His overwhelming mercies, grace and His unconditional love. Rejoice, Rejoice, Rejoice!! We just felt compelled to share these pix with you as #1 it is just breathtaking how God is healing her little body and #2 how very, very fruitful your prayers are in this miracle we asked God to perform. To see the power of His Mighty Hand just leaves us all humble and speechless. We look forward to His continued healing and her body restored once again.

Thank you, thank you, thank you for being such a blessing to us daily ... you are absolutely awesome!! We feel we lean on you all too often but you cannot know how grateful we are that God has placed you in our lives. We love you and May God continue to bless you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Colossians 4:2 "Continue in prayer, and watch in the same with thanksgiving."

Wednesday, February 19, 2003 9:53 AM CST

Howdy Do to the Crew!!

We are still on the "resting mode" at Ronald's house ... which trust me has been the best medicine for us all! ha! Emma Grace's progress on the cell count for the stem cell harvest has been steadily improving so the Bone Marrow Transplant Team wants to continue to see if we can't get her the the "magic number" before chemo. So, that's what we are doing. I think the count number they are looking for is 20 or greater and yesterday we were at 10. Emma Grace and Daddy are downstairs "getting her buddies a drwink" now which is actually getting the lab work drawn. They told us early on that the double catheters in her chest would become her buddies as well as Momma & Daddy's and that we should name them to make her more comfortable with them. So, they became Bertha & Leonard - her buddies and ours. They keep her from being stuck which has been a huge blessing!

We had a grand time at the Ronald McDonald house last night as we FINALLY got Emma Grace's handprint on the wall. Momma has yet to finish is but hopefully, can get that done today. You may remember our mentioning a dear little girl that we met when we first started at St. Jude, Sarah Claire Holder. Sarah Claire is 1 yr with a brain tumor (which is now non-existent..YEAH!!) - One of God's Little Precious Miracles!!! And what a blessing her family is to us. Monica and I were visiting last night concerning how we all have seen God's touch on every corner. Amidst of what seems your world is crumbling at your feet, He continues to bless and bless and bless. What an AWESOME, AWESOME God He is!! Her Momma Monica, her MiMi Sharon and I had decided quite a while back that we wanted to try to get the girls' prints placed close together. So last night was the night our schedules agreed. Well ... it was a hoot!!! Monica decided that she would rather do Sarah Claire's feet and the place we had opted for require Barney with Sarah Claire laying over his shoulder while him stepping on a step ladder. And the same scenario for Emma Grace who got her Pinkie Pearl handprint on the famous wall. We were so pooped from wrestling youngins for proper positioning that we didn't even write their names yet. Ok...so we're pacing ourselves! HA!

Thank you Crew for your continued prayers ... we see the results daily. You all are the best. Enjoy today, We Love You and May God Bless Always!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Sunday, February 16, 2003 12:42 AM CST

Happy Sonday to You!!-

Well...Miss Emma Grace does not yet have enough CD34 stem cells appearing to be ready for harvesting so we are getting out of St Jude. We will return in the morning for more labwork in the for further monitoring of these cells. Hopefully, she will mobilize soon for the harvesting to be complete then round #6 of chemo. It is really a blessing to go to Ronald's house for a break as Emma Grace (as well as Momma & Daddy) are needing a change of scenery before this next phase starts. Even a night or two will be therapeutic for all.

Our number at Ronald's house is 901-312-7440. I haven't had a chance to change the voicemail message to the Hampton's yet but will try to get that handled today.

Thank you for your many continued prayers for our Emma Grace as well as the many others in our St Jude Family. May God Bless you always and we'll be in touch. Thanks again...we love you!!

May your day is filled with Sonshine!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Thursday, February 14, 2003 12:46 AM CST

Howdy Do Grace Crew!!

Miss Emma Grace is doing really, really well! She has FULL control of the south wing at this point! ha! Her ANC is on the rise with 500 today and we are hoping the stem cell harvest will be complete by either Saturday or Monday. The bone marrow transplant team is looking at her labs daily for a specific stem cell called CD34 which just started to appear today. However they calculate the increments, they are looking for the magic number of 15 and she only has 1 so far. They have told us they will be able to place a femural (spell?) cath in her groin to do the harvesting. This is the same blood vein used for angiograms, etc. We are getting closer - just waiting on those numbers to improve. Once the harvesting is complete, we should be able to start the 6th and FINAL (YEAH!!) round of chemo then hopefully, home for a bit.

We want to thank everyone for their support in the KKIX 104 Radio-A-Thon for St Jude that we hear is doing very well. What a wonderful community we live and how very thankful we are to you for all you do!!

Our hearts are overflowing for the love you show in so many ways and we continually ask God to fill your crowns full. You are certainly jewels in our heart! Ephesians 1: 2-3 "Grace be to you, and peace, from God our Father, and from the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, who hath blessed us with all spiritual blessings in heavenly places in Christ."

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

"Hearts, Hugs & Kisses - Happy Valentine's Day to All!!"

Tuesday, February 11, 2003 8:29 PM CST

Happy Tuesday, Grace Team!

Emma Grace is still in her "suite" at St Jude with her ANC on the rise - it hit 100 this morning!! Hallelujah!! She will have to be at 500 before we can be discharged. The Med Team says they will continue with the stem cell harvesting prior to starting round #6 of chemo. They want to utilize this window of opportunity while it is present to see if they can complete the harvesting. So, hopefully, they will be able to identify enough CD34 stem cells which is required for the transplant this week then retrieve them for "freeze". Our guess it that final round of chemo will be next week sometime. The cultures have still been negative which is a pure answer of prayer!! YEAH!!!

Sadly, little Matthew Dison lost his battle with leukemia Sunday morning around 1 am. His family certainly still needs our prayer as we can only imagine how difficult this time is for them. The peace we all have is that little angel is home and no more pains that were taking over his little body.

If you get the opportunity to listen to KKIX 104 on Feb 13 & 14, 6am-6pm, they will be having the St. Jude Radio-A-Thon. Barney & I were able to interview with Tom Travis prior to leaving last week for our support and awareness of St Jude. I personally was not prepared for the interview to be as difficult as it was to recall the whirlwind and painful reality that brought us to St Jude. (You would think my talking would never be referred to as "difficult" and we have shared our story with so many since our initial arrival.) But for some reason this was just tough so I'm not sure how my responses "meshed". Barney did a great job and went there with the intention that "he would just let me do it". ha! The reality of being here with your sick child in such a REMARKABLE facility that thrives soley on donations puts a whole new prospective on how crucial the campaigns are for St Jude as a whole. This number is staggering but very true - 88.9% of all donations received at St Jude go right back into the hospital for the care of patients & families and the continued research vital to ongoing studies and treatment of our children. WOW!! We probably do not know a fraction of what they do but we have seen first hand that the St Jude Team is the BEST of the BEST in childhood cancer, not to mention how they go "beyond the call of duty" for the patients as well as their families. We obviously could not say enough on behalf of St Jude as we are absolutely amazed with the progress Emma Grace has made through her treatments that have been wrapped in prayer. Now, let me reiterate that this outstanding Med Team is God's instruments of His plan. Max Lucado wrote: "God is the one who heals. He may use a branch of medicine and a branch of a hospital or a branch of a live oak tree, but He is the one who takes the poison out of the system." We are just so very thankful that God has provided such a facility that treats each child with top priority as if these children were their very own. What a reassurance to any family that their child is getting every chance within the means of St Jude for the hope of complete cure. We have learned far more about cancer than we ever wanted to know but thank God there is a team of doctors, nurses and staff who are committed to their calling and have the gift of caring to make our journey easier.

We cannot thank you enough for just being there and especially, for your continued prayers. Miss Emma Grace still has quite the road ahead of her and if we try to think about what's ahead it will make us nuts. So today is all we are worrying about and we know that God is in FULL control. Referring to Max Lucado again (he's just a really neat dude) from "He Still Moves Stones": "We need to hear that God is still in control. We need to hear that it's not over until He says so. We need to hear that life's mishaps and tragedies are not a reason to bail out. They are simply a reason to sit tight." So, we are still sitting tight on this bus while God is doing all the driving. Thank you all so much! We love you and May God Bless! Remember - Enjoy today!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Saturday, February 8, 2003 11:46 PM CST

Happy Sonday, Grace Team!

We just wanted to let you know that Emma Grace is doing very well and we are so thankful for your continued prayers. The last two cultures on the "bugs" in her line have came back negative so far. YEAH!! They feel one of the bacterias is staph and the other bacillus. The bacillus sample has been sent to Mayo Clinic in Rochester to ID the exact string properly. At this point, the two antibiotics are the treatment of choice and seem to be doing very well. I'm sure we will breath easier when all the "tests are in".

Once we get a "green light" concerning the bacteria will determine when the stem cell harvesting can be completed. We are still waiting on Emma Grace's immune system to recover which is giving the labs an opportunity to ID the bugs. One day at a time...no more, no less. We are obviously anxious to get this phase of treatment behind us but we certainly would not wish for anything to be rushed. The Med Team dots ALL the i's and cross ALL the t's for the best treatment possible and that's all we can ask of them.

Please continue to remember the Dison family in your prayers as Matthew is still hanging in there since the vent was removed and treatment ceased on Tuesday. They are such a precious little family and our hearts certainly break for what they are having to go through right now. Matthew is their only child born on Aug 29th. I visited with Tonya, Matthew's mom, today and she is such an inspiration!! They are strong in their faith and know that Matthew is going straight from here to heaven. She said they did everything they could by giving Matthew the best treatment possible. Both leukemias on such a little man has been more than his little body could handle. God just knows best and we pray for the peace and comfort only the Heavenly Father can give.

We trust this note finds you well and know that you are in our prayers daily. What a blessing you are to us! Thank you!! May God bless and give you a wonderful "today".

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Thursday, February 6, 2003 4:54 PM CST

Greetings Grace Team!

Just a quick update to ask for special prayers for Miss Emma Grace as she has line infections in both lines of her double Hickman-Luman catheter which are the lines that run central line to do chemo, labwork draws, IV, etc.

They are treating her with IV antibiotics which is broad spectrum to cover the "bugs" in her lines. Unfortunately, they are treating two different types of "bugs", one in each line. The Med Team feels they should be able to tackle these bugs effectively and we do not yet know if this is affecting our stem cell harvesting. Hopefully, tomorrow we will have a better view of exactly what these bugs are and how it will affect our scheduling.

Her ANC is still at zero so therefore her body is unable to fight the "bugs" on her own and the IV antibiotics are vital to get rid of the infection.

Thank you for your continued prayers for our little angel. God has everything under control and we know these "bugs" are in His hands. We just pray for her continued healing and help for this hurdle to be behind her soon.

We Love You and are so grateful for your support!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tueday, February 4, 2003 10:23 PM CST

Hello Grace Team!

Well, we loaded up the big red truck in the wee hours this morning as Emma Grace was "flirting" pretty heavy with fever and she had to be back at St Jude by Wednesday ... so we just came a day early. It was fast and furious but we got here with all the necessities it seems. On the trip here, she spiked a fever of 102.1 so our inpatient room was ready when we got here. We had called ahead to give them a heads up. They all sure seem to spoil us.

So, our new room # and phone # are listed on the main page below. We should see Dr. Santana tomorrow for an update on what's on the schedule concerning her stem cell harvesting. Her ANC is zero right now so we're sure her immune system will have to recover before they can do anything. They felt we should be here at least two weeks this trip so we are staying at Ronald's house again.

We came back to find heartbreaking news about a dear couple with a little boy, Matthew 5 mos old, has been removed from the respirator and all meds as there is nothing more they can do for him. Tonya & Nick have been here since Matthew was 12 days old and they are facing the unbearable of having to say goodbye to their son who has fought Leukemia from day one. We just pray for God's comfort and peace on this dear couple who always seems to have a smiling face and faith that God is in control. We know their hearts are breaking and would ask you remember them in prayer.

Thank you for just being there for us. It is always such a comfort to go to "The Team" for their support. May God Bless!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Saturday, February 1, 2003 8:30 AM CST

Happy Weekend to All!! **The New HairDoo Pic is Uploaded!

Yes, we are on the homefront now for a brief time but hey, we will take anytime at home that we can get. It was such a pretty day to come home on Thursday and that Red Ford just put the miles behind us before we knew it. I think Daddy made a new record coming home! ha!

Emma Grace has just made it exceptionally well through this last round of chemo. Not one day of nausea so far. Yippee! And she has felt SO GOOD which always makes Momma & Daddy happy. Her & Bubba Eli have been "rompin & stompin" which is music to our ears.

We are scheduled to be back to St. Jude next Wednesday as they are going to start harvesting her stem cells from her blood stream. This is much less invasive than going through the hip bones plus we will have this phase behind us rather than doing it in the surgery when the tumor is removed. We received her schedule from St. Jude in the mail already for March 10-12. All the tests - bone scan, MRI, CT Scan, bone marrow aspirate, xrays, etc are all scheduled for those days as well as an appointment to visit with the surgery clinic concerning the tumor removal.

At times it seems so long ago when we started her treatments but in reality its only been 3 1/2 months!! Now we are switching gears getting ready for the next phases which we understand will be quite lengthy. Look at the many miracles God has blessed us with to this point and we just pray for His continuance in complete healing. We look forward to the day of "remember when" and it is ONLY by the grace of God.

While I was in the middle of typing the last update, Dr. Santana came to the computer area to give us the marvelous news concerning Emma Grace's bone marrow being clear. He had initally told us last week he felt it was clean but until all the pathology smears were complete, it couldn't be confirmed. Needless to say, hearing the wonderful news put our emotions in "high gear" so we're not sure we completed the initial thoughts we wanted to share or even if it came out the way we intended. Let us just say, it is always hard to place on paper what is exactly in our hearts. But it is such a joy to us to share with our dear family and friends what God is doing. You cannot know what a comfort it is staying "connected" with you and your responses of encouragement, excitement and praises to our Lord for all His blessings. That brings something to mind ... several have mentioned they were afraid we might be overloaded with too many emails and they didn't wish to bother us. Absolutely not ... you are never a "bother", only blessings. We cannot imagine how people go through devasting experiences without God and the love and support from family and friends.

Now, back to the original thought that was started (bear with me, I'll eventually get it out. ha!) In recounting the last thoughts on the previous update, we certainly hope you did not interpret we are "glad" Emma Grace has cancer. Far from it. When Paul was talking about "rejoicing and giving thanks", we feel he was reminding us not to worry and keep your focus on Jesus. To elaborate Paul seems to explain better than I can in Phil 4-7: "Rejoice in the Lord always; and again I say, Rejoice. Let your moderation be known unto all men. The Lord IS at hand. Be anxious for nothing, but in everything, by prayer and supplication with thanksgiving, let your requests be known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Jesus Christ." Our thanks and rejoicing are not for the cancer but what marvelous works God is doing in spite of the cancer, the numerous blessings He has allowed us to receive in the process of His miracle at Hand and for humbly reminding us that we are not in control. The reality is and sometimes not so easy to swallow, fully letting go and not trying to "help" God - as if we could help Him if we tried. In a "perfect world", we would never wish for anyone to face cancer or any other life threatening situations. But as we all know, we do not live in a perfect world yet so whatever is placed in front of us is for a reason. So, who are we to question God for the obstacles placed before us? He has it all figured out we just have to trust in Him for the strength and courage to "ride the bus with Him". We know Emma Grace has a long road ahead of her but she is in God's hands, who continues to keep her close, healing her little body.

Once again, we are ever grateful God has placed you in our lives. Your continued prayers and friendship are treasured beyond words. May God richly bless you in all you do! We love you!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, January 29, 2003 at 03:16 PM (CST)

Hello Crew! ***UPDATED THE "NEW HAIR-DOO" PIX!!

We are on the countdown of round #5 chemo ... it should come off sometime around midnight then hopefully, HOME-HOME HERE WE COME!!! Emma Grace has done VERY well with chemo this time with the only changes so far of being a decreased appetite.

Nurse Ashley and Momma decided to give Emma Grace a "haircut" last night as her long whisps were pretty sparse. It looks pretty cute considering Ashley nor I claim any fame to costmetology! Hopefully, I will get updated pix online so you can be your own judge! ha!

The results of her ultrasound shows that due to the prolonged pressure by the tumor on her left kidney has caused some deformity which still functions just not full throttle like her right. Her Med Team will monitor it closely but felt it should be ok as is.

Also, they took a panorex xray today which would confirm the "hot spots" showing on her bone scan last week are actually TEETH which are forming to come in soon. That sure left us with a sigh of relief. It was pretty impressive that Emma Grace stood still for the panorex machine to scan completely around her head and they got a really good, clear view the first time!

NOW REALLY GOOD NEWS>>>>> Dr. Santana just came to the Resource Room where the computers are to tell me the bone marrow is CLEAR!!! All the path smears are CLEAN!!! So, that means we are going to get to come home until next Wednesday then return to St. Jude to have her bone marrow, stem cells actually termed, harvested when her counts start to recover. We just have to be close by during the "fever" time which we usually get after chemo then they will be ready to harvest as soon as the numbers are on the rise. GREAT NEWS as that means they will not have to aspirate through her hips!! He said it was better to get it from the blood and it will be banked from transplant later after surgery is completed. Wow! I'm in a whirlwind so I trust I have translated as he just relayed to me. ha! Bottom line ... it's great news!!

Well, we wanted to say hello to everyone and trust your day is going well. Hopefully, next transmission will be from the homefront. It is always a relief to get here for another treatment complete and such a blessing to receive such positive news. Why would we expect anything else? We asked for a miracle way back in October, right? Nonetheless, it still leaves us breathless at His awesome power and the healing we have seen right before our eyes. We have met so many patients and families that touch our hearts in so many ways. How ironic that through their rocky roads of life and ours as well that we have received so many blessings just by those paths crossing. He said we should give Thanks for EVERYTHING and REJOICE in the Lord ALWAYS. It may sound crazy to be rejoicing or giving thanks for cancer?? Not so much the cancer but the journey. Barney & I are constantly reminded there's a plan, not ours as we would mess it up, but God's Plan who has everything under control.

May you day be full of Sonshine and your hearts full of smiles! We love you and are continually grateful our Lord has blessed us so richly with you!!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Monday, January 27, 2003 at 02:37 PM (CST)

Happy Monday to All! Well, Miss Emma Grace's numbers recovered well by Friday so we were back inpatient by Saturday with ROUND #5 of Chemo in process by 5:00pm. She seems to be handling it very well so far (not to sound pessimistic - just historically realistic. ha!) and chemo should be complete by Wednesday evening. We have started adding our direct phone number to the main page below for your convenience. We'll try to keep that updated as well. (You know "walking and chewing bubble gum" were never my speciality. Ha!)

They have scheduled an ultrasound for Tuesday morn as her BUN numbers continue to creep upward. BUN evidentally is indicative of the liver and kidney functions so they are going to make sure all is well with both. We are obviously concerned as the tumor had her left kidney so out of position for some time. We just pray all is still trying to heal and will continue to heal. Hopefully, we will have the results Tuesday afternoon. Will keep you updated.

We are still in awe of the marvelous, miraculous power we have seen by God's hand. We were anxious for the "sneak peak" test results last week but had a great peace that all is in control just as He promised. It is so hard to translate the overwhelming joy and gratefulness to His mercies and grace. It's hard sometimes not to "hold your breath" but it always seems when it is the hardest to "breathe" there's a calm, gentle Hand around our shoulders. The message is always the same, "It will be alright, I'm in control." Wow ... Who could ask for more?

Thank you Grace Team for your never ending love, suppport and much appreciated prayers. Your faithful prayers are being answered each and every day. We are so grateful to you for all you do. We Love You and May God Bless You in Over Abundance!

Only By His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Phil 4:13 - "I can do all things through Christ who strengthens me."

Wednesday, January 22, 2003 at 02:40 PM (CST)

OOOOOOOOOOKKKKKKK ... Just got out of Dr. Santana's office and the news is VERY GOOD!!! The CT Scan comparisons of Oct 9th show a decrease of the tumor by 85% and noted by the radiologists with "Remarkable Improvement"!! Dr. Santana has been feeling of her abdomen clinically and still yet feels nothing by pressing on her stomach as it has shrunk so much. The bone scan shows the lesion on her jaw to be greatly improved and the place on skull shows very little presence now. The bone marrow tests show to be CLEAR but are still awaiting the final "smears by the pathologists" to confirm. AMEN!! AMEN!! AMEN!! Dr. Santana said he is extremely happy with these results (as WE are also!!) and feels the best route is to continue with the two final rounds of chemo as planned. We come back for labwork on Friday to see if her platelets have recovered on their own then will be admitted to start Round #5 on Saturday or possibly Monday depending on where her platelet numbers are standing. Dr. Santana would like to give them the opportunity to recover and this shows the bone marrow is doing its job to recoup. Surgery to remove the tumor completely is planned upon return to St Jude after Round #6. They will re-evaluate with ALL scans, xrays, tests, etc prior to surgery and may possibly harvest her bone marrow at the same time. Will wait to decide when those tests are complete. Dr. Santana reminded us "we still have quite a way to go" which we are fully aware of but we have committed Emma Grace into God's hands from her birth and He has everything under control. Well ... now you know everything we do! ha! We are so thankful for God's ever presence, grace & mercies in leading us through the journey before us. And providing us with the prayer warriors that continue to ask for Emma Grace's healing, courage & strength. We also feel that same strength is also felt through your prayers for Daddy & Momma as well. Thank you!! What JOY He sends our way through His "Medical Tools" of St Jude and You, the Grace Team, who bring such Sonshine! We Love You - Only By His Grace: Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Tuesday, January 21, 2003 at 10:18 AM (CST)

Good Day to Everyone! Emma Grace is doing very well with her testing and actually is having a bone scan & EKG done as we speak. So she is snoozing & dreaming of peanut butter I am sure ... that was her main subject before nappy time. HA! Yesterday she had the bone marrow aspirate & CT scan completed. She only had to be under general anes. for the bone marrow aspirate as she did so well on the CT scan. We had discussed them "taking pictures" of her belly, chest, etc. So she just got on the table, they asked if she was ready for pictures and she said "Watch me, Momma!" Boy! What a long way we have come in just three months of getting in the "hospital groove". Dr. Santana said we would visit about all her tests on Wednesday afternoon as the bone marrow results would not be back until then. SOOOOO ... Yes! We are just holding our breath in anticipation for this sneak peak. WELL ... ARE YOU READY FOR THIS?!?!?!? ... Dr. Santana was palpating her stomach yesterday during exam and HE COULD NO LONGER FEEL THE TUMOR!!!!!!!!!! He said he knew it was still there but he COULD NOT FEEL IT!!!!!!!!!!! With Barney & I being on the "healthy side", you could have knocked us over with a feather. Dr. Santana was all smiles as well. We feel he is as anxious as we are to see the "black & white" of it on these tests. We know there isn't anything too much for God and He has it ALL under control. Barney & I seem to be on pins & needles awaiting the good news. You know we will be hitting the email for you as soon as we know. Dr. Santana did say that depending what the bone marrow shows will determine whether we go "inpatient" on Wednesday or he may wait until Sunday to let her platelets recover on their own. Which is really a good thing ... meaning her bone marrow is healthy. Well, gotta run and talk to you all soon! We love you! Only by His Grace, Emma Grace, Daddy Barney & Momma Trish

Friday, January 17, 2003 at 02:01 PM (CST)

Wow! Back to the homefront again!! Even though the time is short to be home-home as we leave for St Jude on Sunday. We are hoping to make services at our church Sunday morning then leave out directly ... that means "the big red Ford" better be loaded & ready!! ha!

Emma Grace was able to leave Hastings Hospital yesterday even though her ANC was only 354. (Momma begged for early-out due to good behavior! ha!) We were thankful Dr. Perez & Dr. Santana agreed as her numbers are on the rise with her immune system recovering.

We are quite anxious to get back to St. Jude for the "sneak-peak" CT scan, bone scan & bone marrow aspirate on Monday & Tuesday. We are confident that God's healing hand will be seen in these diagnostic tests. The amazing progress we have witnessed so far is due to nothing but God's grace & mercy.

We have to share a marvelous experience we had recently with one of our dear friends, Jackie, who is also a nurse at the WPM Indian clinic in Stilwell. Emma Grace had been to the clinic for labwork last Thursday which Jackie helped take care of her. Well, Jackie called me Saturday morning in the "wee hours" as she could not sleep ... Emma Grace was on her heart and she felt she could not rest until she called. Jackie said that of the many times she had been with Emma Grace that Thursday was particularily special as she felt the presence of God in the room with us! She said everytime she looked into Emma Grace's eyes, all she could be reminded of was God and all that He is doing for her. She said it was so hard to explain but she left our room in tears ... not sad tears but tears of joy for allowing her to experience His presence. She kept apologizing for waking me up to share this with us but she felt God urging her to call. I told her had she not called, we both would have missed out on such a wonderful blessing!! I stayed up after Jackie's call in amazement of how God speaks to us on such an individual basis and how unworthy we are for His many, many blessings. He is absolutely awesome! In reading scriptures during this sleeplessness as my heart was positively overflowing, I read 1 John 4:7-12. "Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God. He that loveth not knoweth not God; for God is love. In this was manifested the love of God toward us, because that God sent His only begotten Son into the world, that we might live through Him. Herein is love, not that we loved God, but that He loved us, and sent His Son to be the propitiation for our sins. Beloved, if God so loved us, we ought to love one another. No man hath seen God at any time. If we love one another, God dwelleth in us, and His love is perfected in us." Did you get the feeling John was trying to tell us God equals Love?? Isn't that the truth!! and it is so UNCONDITIONAL!!

Thank you for your continued prayers, your overwhelming generosity and most of all your love & friendship ... that same love John was speaking about in the above scriptures. God is so good!

We Love You!
Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

PS>>>> NEW PIX POSTED!!! The first pic was taken by one of St Jude's finest in the PR dept back in November. Couldn't resist sharing with you!!

Tuesday, January 14, 2003 at 12:53 PM (CST)

Hi, this is Nancy Halsey, updating for Emma Grace, Trish and Barney. They have been in the hospital at Tahlequah for a couple of days. Emma Grace started running a temp around 103. They asked for prayer that they will be able to get out by Wednesday or Thursday because they are due back in Memphis on Monday.
Thanks for your prayers.

Friday, January 10, 2003 at 06:26 AM (CST)

Greetings to the Grace Team!! Whoa! We are actually still home-home ... holding our breath & praying to hold fever "at bay". And it could pop up today which is just all part of normal routine with chemo, but it's just sure nice being home. Emma Grace is doing better and trying to regain her appetite. Believe it or not, cottage cheese is one of her very favorites and if that's all she'll eat, then guess what she gets! She had her labs run yesterday with her ANC being at 210, on the downhill slide, her platelets were very low at 9,000. Normally, platelet transfusion is given when they get below 20,000. So, we made the trip to Tahlequah to see "The Grace Med Team of Tahlequah" for transfusion of platelets. We were able to attend Lee's funeral which was standing room only. What a tribute to a great friend with an enormous heart for all. Once in Tahlequah, Dr. Perez told Emma Grace all she needed to do was get her transfusion and go home!! We got out by 7:30p and it was the best birthday present for Daddy! Nanna had birthday dinner waiting for us when we got to their house but Emma Grace had already conked out. She had done her part for the birthday festivities! How gracious God is! This may not seem comparative to the continuing decrease of the once enormous tumor but every blessing God gives always deserves our praises and thanksgivings. And should we end up back at the hospital today, well then, that's where God needs us to be. Whatever it takes. He gave us one more day at home and what better way to appreciate home, not the structure, but "home". The place Eli runs to from the schoolbus after his long day with a squealing sissy waiting at the front door. The place where toys get scattered and the dirty laundry piles in the background of children's laughter or even fussin' and owies getting kissed away. Where the world stands still and nothing else matters at the sight of children sleeping or their whispers of "I love you". The table that gets graced from the hearts of babes who say their first "pieced together" prayer. You know the place ... comfortable, secure, where God provides our earthly bodies rest. Can you only imagine what heavenly homes await?? Imagine yes, comprehend no. It seems this week has presented more funerals ... Mr. Spear on Monday, Lee Capwell on Thursday and today, my great aunt, Lillian Thurman. We don't always understand God's timing but He always has a reason and behind His reasons, a plan. Saddness is naturally expected for our losses but what comfort and peace in knowing these three alone are finally home. No more worries, no more tears, no more pain, no more death - only the ultimate experience of being with the Author and Master of unconditional love. The eternal joy being in the presence of God, the Father, with an abundant supply of comfort, mercies and grace. Wow! "Thank you Lord for your continued blessings beyond all our expectations. Especially, for sending Your finest to our sides for love and support, that same love You instilled in each life to share with others. For loving us so much, You sent Your Child, for the uncomprehendable sacrifice and price paid for our sins. The promise of eternal life ... truly going home." Have a blessed weekend, Grace Team! We love you. Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish * * * "But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.'..." 2 Corinthians 12:9 NIV

Tuesday, January 07, 2003 at 08:50 AM (CST)

Greetings & New Year's Blessings to All!! We are actually HOME-HOME again! Just arrived late Monday afternoon and sure love being home for a bit. We will more than likely be inpatient with our medical friends in Tahlequah by week’s end. Emma Grace is
doing fairly well. This dose of chemo (cisplatin) makes her pretty ill but she is such a little trooper! Daddy & I have decided she is far tougher than we would be in her shoes. She was sure glad to see her Bubba when we picked him up at after school care!! Dr. Santana saw her this morning before we left and motioned the tumor being about the size of a NICKEL!!! and the jaw lesion was referred to as "bone spikes" rather than the obvious protrusion that was present in weeks past. How marvelous for God's hand to continue to work His miracle in our little angel. We'll say it again ... thank you so much for your prayers as they are being answered every single day. We return back to St. Jude on Jan. 20th for CT scan, bone scan and bone marrow aspirate to get a "sneak peak" of what is going on in her little body. Dr. Santana said we would complete the tests after the 6th (and final) round of chemo. But these 3 tests on the next visit will give us a very clear picture of exactly where we stand at this point. We were able to "attend" our home church again via long-distance and the aid of speaker phone Sunday night. Emma Grace has figured out that we are having church at the Marriott. Once she hears the service begin she goes to the nightstand and passes out "songbooks and Bibles". The songbook happened to be a book written by JW Marriott, "The Spirit of Service" and the bibles were the trusted & lovingly placed Gideon Bible and a new addition to the collection, The Book of Mormon. Emma Grace was just making sure all our bases were covered for the service. ha! During our stays at St Jude & Ronald's house we have been fortunate to meet many great families and all with incredible stories. One little girl, Ana Lisa, (who is Emma Grace's tricycle buddy) has a very unique story that we want to share with you. Ana Lisa is 3 yrs old and was diagnosed in October with Wilms tumor, which is cancer of the kidney, in her case the tumor being very large with a not-so-promising prognosis. When we first met her in October, her mother told us that she'd previously lost a daughter who was also 3 yrs old to a different form of cancer and that her husband had recently been diagnosed with colon cancer which was being treated at that time with chemo with good prognosis. She said that her husband and her had a great peace about Ana Lisa and was convinced that God would heal Ana Lisa. Well, we met up with Ana Lisa & her Momma who were very excited to share the most recent scans show no more cancer!! She is still in therapy and should be finished in April. That's right GOD'S STILL ON HIS THRONE and working another miracle right before our eyes!! His power is absolutely breathtaking. We are so thankful for the opportunity to meet so many wonderful families that God has placed in our journey path. We wanted to ask you to remember two different families that have lost loved ones recently. Lee Capwell, which have been friends of our family for many years and also is the president of the company in which Barney is employed, Midwest Cable Communications. Lee passed away very suddenly on Saturday. He was only 44 yrs old and is a dear friend that will be greatly missed. Also, Alva Spear, a dear gentleman we attend church with went home to be with our Lord last Friday. Mr. Spear is the grandfather of one of my high school classmates, Randy Spear. Emma Grace has always been quite taken with Mr. Spear and always loved climbing into his frail lap to share a hug with him. Our hearts are certainly sadden by the losses these two families have suffered and we pray for the peace & comfort of our gracious Lord. Your continued prayers are deeply appreciated more than you can know. We know we have said this many times before but is certainly worth reiteration. Your prayers are constant strength to not only Emma Grace but to Barney & I as well and are ever present in our daily tasks, great or small. You cannot know how grateful we are that God has sent His best to our sides. We love you and continue to remember you in our prayers as well. You all are absolutely the greatest!! Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish * * * "Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12 NIV

Monday, December 30, 2002 at 10:55 PM (CST)

Well now, you can certainly tell that we made the best of our home for the holidays!! It's been 9 days since our last update! ha! We truly had a WONDERFUL time being home for Christmas. Emma Grace and Eli got an extra week to catch up on loving on each other, giggling, squealing and just having fun together. Daddy & I could just wrap up that joyous laughter and call it the absolute best Christmas ever. Who could ask for more?? How very grateful we are for the unbelievable blessings God has given us this year and the miracle that continues right before our very eyes. What a wonderful, awesome God He is. We are back at St. Jude's and Emma Grace is starting her 4th round of chemo as we speak so hopefully, we should be finished on Friday nite. Only two more to go. Not sure if we will have to stay for clinic appointment on Monday ... just wait and see. She had her audiology test today and WITHOUT general anesthesia!! Tests show she has sustained some hearing loss but on very high frequencies which should not affect her day to day routines. They will retest prior to round #6 of chemo for update of the hearing loss. This is certainly a blessing as it sure could be alot worse. Trinka, our nurse practioner, saw Emma Grace in clinic today and was not able to feel much of what's left of her tumor in her abdomen nor very little of the lesion that is on her left jaw. God's hand at work is quite amazing!! We started this journey with Emma Grace only 2 1/2 months ago and look at how God has shown His face on every turn - wiping away the cancer in her small body that once was trying to take control. We can never underestimate the power of God. Emma Grace is living proof of the awesome wonders that can only be performed by the Master Physician. He skillfully sends His best to our aid every step of the way. Thank you for being only a prayer away! and for your continued prayers. May your New Year be overfilled with joy and happiness as we are so thankful to our Father for blessing us with you!! Only by His Grace - Love, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Saturday, December 21, 2002 at 10:53 AM (CST)

Christmas Greetings to All!! Home Once Again!! Actually, we got out of hospital in Tahlequah on Wednesday afternoon with our ANC numbers on the rise. Emma Grace was so thrilled to be out of the hospital she was talking non-stop for a good 20 minutes. I tried to get her to sing "Jesus Loves Me" for her Daddy while driving home but she informed me "Me busy wooking out my window". Alrighty then! ha! She wasn't able to leave her hospital room this visit as the rooms were full of lots of illnesses that are going around so needless to say, our little dear was ready for new surroundings! We are so very thankful to be home again. We were able to attend Miss Kelsey's funeral service on Thursday along with over 800 more of her friends and family. It sounds strange to say but it was the most amazing and inspirational funeral we have ever been. What an outstanding testimony little Kelsey has and her witness is still ever present in her passing. There were four people who received Christ at her funeral service!! AMEN!! It is uncomprehendable to our human minds how awesome our God is and how He uses EVERY situation for His blessings to be revealed to us. On one hand our hearts are broken for the tragic loss of such a dear, inspiring young lady to leave on such short notice but how victorious for her to be present with our Lord. And for that very reason our hearts overflow with praise and celebration. Please continue to remember their families in our prayers and as well as for the healing of Kolby, Kelsey's brother who was also in the accident with her and is still recovering in the hospital. Kolby was moved to a regular room from ICU on Friday. We are planning to stay home Christmas Eve and Christmas morning then have lunch at Aunt Judy's. With only a few hours to get in all the "Christmas Gatherings", we have planned the following weekend with festivities as well. My sister Dianne's Crew, my brother Jerald's family, and the rest our crew will all congregate at our Hampton House on Friday nite. Then Saturday onto the Hampton's for yet more food, fun and especially fellowship. This will be our first Christmas without Dianne (Christmas has been at her house the past 15 yrs) so we are experiencing a year of new traditions in more respects than Emma Grace's illness. There is no doubt Dianne & Jerald are singing the GREATEST & JOYOUS of Christmas praises especially with the recent arrival of Cousin Kelsey. What a wonderfully peaceful and blessed sight of which we cannot yet imagine! We've so many blessings to be thankful for this year & we pray this Christmas your "blessing plate" is overflowing as well! May God richly bless you today & always. We love you, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish *** Luke 1:11,13-14 "For unto you is born this day in the city of David a Savior, who is Christ the Lord...And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, Glory to God in the highest, and on earth peace, good will toward men."

Sunday, December 15, 2002 at 10:14 PM (CST)

Hello Troops! Sorry for the delayed response of updating as we are now back "inpatient-on-the-homefront" in Tahlequah @ WW Hastings Indian Hospital. Emma Grace's ANC was dropping & she spiked a fever Thursday evening so this is just part of the process ... get IV antibiotics until our ANC recovers. We are praying she will start climbing this week to get out and prepare for the Holidays. We have certainly had Christmas already and so thankful for the continued healing that God is performing on her little body. You can imagine the crew here at Hastings is spoiling her more & more. They are such a blessing to care for her while we are away from St. Jude's. She is doing very well and has started eating better ... which you know always make Momma & Daddy happy to see her eat! ha! Thank you for your continued prayers and we pray for your days to be filled with blessings during the holidays and always. Enjoy Today!! We love you!! Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, December 11, 2002 at 07:06 AM (CST)

How wonderful to be HOME-HOME Again!! Emma Grace is doing very well after round 3. She needed a good dose of HOME-HOME as well as all of us. Dr. Santana gave us his blessings to "go home and enjoy Christmas as she deserves it". We are not scheduled to be back until Dec 30th as he gave us an additional week to be home for the holidays. As we left Memphis, Emma Grace was bubbling (as was Momma & Daddy) and jabbering up a storm. "Bye "Sissippi water, Bye Mempus ... goin' home-home ... see Nanna, Poppa, Bubba, Chuck, 'Bastian (Sebastian, our bassett hound), Dollwee, Wittle Bit, Fwit, (Dolly, Little Bit & Flit - our horses) Helwen, Beeble (Helen & Beetle)" ... the list went on & on & on. Barney & I were chuckling at her excitement and couldn't hardly sustain our own. What a blessing she is and such a little trooper. We're not so sure we could be as brave as these kids are in their situations. We are so grateful for the chance to be home for awhile as so many of the families will still be either at St. Jude's, Target House, Ronald's house during Christmas. Many families we have met haven't been home in months. We pray for their courage & strength as the holidays seem to be tougher times being away from home. They are absolutely amazing though as they take the attitude of "whatever it takes" to get my child what they need. God sure sends His blanket of peace lined with strength & mercies and most of all, stitched with His love. Our hearts are full and so thankful for many, many things - for being such a loving & gracious God who sent His ultimate gift of life through, His Son, Jesus; for His protection and continued healing of Emma Grace, for His direction and wisdom in sending us to the best of medical teams - through the St. Jude's specialists, nurses & staff and our "customized" home hospital care team through the Indian Health Services - the best of care God has truly blessed them to provide and last, but certainly not least, sending His troops to stand by our sides through continued prayers, love, friendship & support. Who could ask for more? We love you and truly appreciate everything you do. May God richly bless you daily. Enjoy today! Keep those prayers a rollin'! Only by His Grace - Emma Grace, Bubba Eli, Daddy Barney & Momma Trish *** A thought to share with you ... "Grace is alittle like lightning - it flashes from heaven in an unexpected burst of light. It gives us a startling new glimpse of our surroundings. In its sudden light we see a new truth, something we didn't suspect - that God is ALL around us. We did nothing to earn His presence; we do not deserve His love. Grace is His free gift to us." borrowed from - "Lifting You In Prayer" by Ellyn Sanna

Friday, December 06, 2002 at 04:52 PM (CST)

Hello, Hello, Hello!!! Emma Grace is doing very well with chemo this round and has had minimum nausea. Hooray!! & Amen!! Also, God has sent another blessing our way. Her blood pressure has improved and they have cut her dosage from 100mg to 50mg only twice daily now instead of three times. DOUBLE AMEN!!! Dr. Santana had told us once the tumor reduced that would improve the blood pressure situation. She has been on more meds than adults normally would take. So, we are very thankful for the improvement and continued healing God has so graciously sent her way. She has been eating alittle better so they say we are going home without the IV nutrition!!! The whole staff was amazed that she eats pancakes with peanut butter & syrup. Ms. Pam said that must be an "west of the Mississippi thing"!! So now our Princess is known as Peanut Butter Princess!! HAHAHAHAHA We've always had peanut butter with pancakes ... its the only way!! Well, the game plan is still on go ... finish with chemo Saturday, get discharged until clinic appt on Monday, then hopefully, released to come HOME HOME until Dec 30th. We pray all works according to plan or at least somewhat close to. We have learned not to plan too far in advance as things can change pretty quickly. Besides, it's all God's plan ... we're just along for the ride. Thank you all so much for bringing Emma Grace to His throne daily. We are so thankful for your friendship & kindnesses. We love you and hope next update will be from "home base". Enjoy Today & Have a grand weekend! Only by His Grace, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, December 04, 2002 at 03:13 PM (CST)

Hello Crew!!! Emma Grace is doing very well thru round 3. They have discontinued the IV nutrition at this point as she has been alittle better about eating & drinking on her own. Hopefully, we will be able to continue to improve with our eating and go back home without the 17 hr daily IV backpack. That would give Emma Grace so much more independence during the day so we have really been "playing up" the drinking and eating scene. If she would take after her Momma, it wouldn't even be a problem. ha! The weather has been dreary & rainy here so far ... all the ice has been north of us. We trust all is well with you all. There is not a single day that goes by that you are not in our prayers and hearts. What wonderful blessings you are to us! Enjoy today and thank you for keeping those prayers a rollin'! Love, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Monday, December 02, 2002 at 11:24 PM (CST)

WE'RE HERE!!! Our suite @ St. Jude's had pillows fluffed & bed turned down waiting her arrival. Emma Grace was actually jazzed about getting to see everyone again ... she talked Dr. Santana's leg off. ha! BIG PRAISES COMING YOUR WAY ... The golfball sized tumor has reduced even more AND the bone lesion on her left jaw has also reduced. Dr. Santana's (you remember he is very conservative) stated he is "very encouraged by her progress". He reminded us we are still "early in the game" but still he is encouraged by her response to the treatments. AMEN!! What an amazing God we serve!! They will re-evaluate all the affected areas prior to round 5 starting with the bone scans, ct scans, MRI, etc. We will have a more diagnostic analysis at that time. We know God has more blessings in store for her as well as her medical team through those evaluations. Her 3rd round started today and should finish on Friday then we have an appointment in clinic with Dr. Santana again on Monday. Hopefully, we should be able to return home after clinic appointment barring any fever, etc. He said provided we have no set backs we are not scheduled to return until Dec 30th!! WOW!! CHRISTMAS AT HOME IN THE OZARKS!!! We pray all goes well for her continued healing and the miracle God has underway. We are so thankful for His mercies and grace in each step He leads our baby girl. Thank you for your love, prayers and support! Keep those prayers a rollin!! We love you! Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Sunday, December 01, 2002 at 02:23 AM (CST)

"On The Road Again!!" We are headed back to Memphis today for our "reserved suite" at St. Jude's. We're a bit anxious in hopes of only staying for a brief period this time and to return home by next weekend?? Wouldn't that be lovely!! Emma Grace is scheduled to start the 3rd round of chemo on Monday. Her Daddy & Momma sure are proud of what a tough little trooper she has been. We pray for God speed in this round and for Emma Grace's comfort. Please continue to keep those prayers rolling ... Thank you all!! You're the best! Love ya! Only by His Grace, Emma Grace, Daddy Barney & Momma Trish PS ... Please remember Bubba Eli who is staying at home with Nanna & Poppa this week. Bless his heart, he just got used to us being home and now, gone again! Mr. 10 yr old is having to adjust with "our new way of life" as well. But he told me Friday, "this is just part of Sissy getting better". Thanks Eli!! ;) **Note: New Pix Posted**

Friday, November 29, 2002 at 07:58 AM (CST)

THANKSGIVING GREETINGS TO ALL!! Yes, we are still in the area just have not had access to keeping up with you for a while ... and boy, did we miss getting to stay in touch!! We have so much to be thankful for ... to our loving Father who has shown us first hand of His mighty power, mercies and love. All praise and glory goes to the Lord!! Emma Grace has been in the hospital from Thurs to Wed in Tahlequah as she spiked a fever. Our doctors had all the groundwork laid previous to our arrival for the expected fever and worked hand in hand with St Jude's to get our goal accomplished. It worked slicker than slick! Her ANC was on the downslide last Thursday and started to climb on Monday ... she received platelets by Wednesday then released for Thanksgiving! What a blessing! Hastings Hospital spoiled our little angel and she had a ball. Bless her heart, being sick doesn't slow her down, she (as well as Momma & Daddy) were just adding more treasures to the friend list! Is it not just astounding how God always places just the right people in your paths when you need them the most?!?!? So, we were released with the orders from Dr. Lewis to go enjoy all the joys of family, friends, (food) and fellowship we could stand for our Thanksgiving. And did we ever!! We have learned quickly to utilize those days we are feeling good and make the best of them. In retrospect, that's the way everyday should be whether illness is present in our lives or not. We've had an immediate prioritation of what's really important, what used to be worries, no longer seem so large and how very blessed we are to have you! Our lives are based solely on today ... no more and no less. God has so humbly and graciously opened our eyes of today being such a wonderful gift. Our hearts overflow with thanks to the Father for His ever presence, holding us up when we feel our strength has run out, for the stern yet loving reminder that He is God Almighty, for sending only His best to our sides to rally in prayer, support and love far beyond what we could imagine ... most of all, for His mercies, love and grace and the continued healing of our baby girl. Thank you for your continued prayers, we remember you daily in asking God to send you an extra portion of blessing for your kindnesses. Enjoy your Thanksgiving, we love you and may God richly bless! Only by His Grace, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Wednesday, November 20, 2002 at 04:49 PM (CST)

How Sweet Home Sweet Home Is!!!!! Emma Grace, Eli as well as Barney & I have been too excited to be home for awhile. Emma Grace has run circles, literally, from the kitchen-dining room to the living room. She has IV nutrition for 17 hrs a day which is placed on a small backpack so those laps around the room require a second party in tow. Nanna & Mildred were here for a visit yesterday and I presume they went home for naps after their relays were complete. Emma Grace's room became a war zone within 2 hours but who cares ... she's having a ball!! She and her bubby have been attached at the hips except for his time away for school. Believe me, she doesn't like the fact school is taking him away for a short time during the day. We went to her pediatrician on Monday for labwork which resulted in her ANC being 28,700! Wow!! That's better than most healthy adults but it is most likely to decline soon then rise back prior to our next Memphis trip. We will go back Thursday for labs again for updated numbers. Emma Grace is adjusting well to her "home health care" and Daddy & Momma have gotten "in the groove" (sort of). ha! We are planning to have Thanksgiving with Barney's family this weekend and with my side of the tree next Thursday - provided Emma Grace escapes a fever. We are looking forward to seeing everyone and pray for good health and good numbers. Thank you all so much for your faithful prayers. The belief that God is still in the miracles business has gone along with your earnest prayers and look what He has done!! She is His miracle in progress and we believe she will soon be healed completely. Our God is beyond awesome and your companionship He has sent us to endure this trial is breathtaking. Hebrews 4:16 speaks profoundly of what we have seen Him do through you. "Let us, therefore, come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." May God Bless and We love you! Only by His Grace, Emma Grace, Bubba Eli, Daddy Barney & Momma Trish

Monday, November 18, 2002 at 12:32 AM (CST)

WE ARE HOME-HOME!!! Got into lovely, crisp Summers, AR about 4:15am Sunday morn and were all three wound to the gills to be home for a break. We snuck into town without anyone knowing we were headed home and surprised everyone at church this morning! Eli was probably the most surprised of all!! It was sure worth the wee-hour driving to see the look on his little face. What a wonderful, wonderful worship service!! Bro Grant had continued to keep us "in services" while in Memphis via long distance even during the revival this past week. It sure was nice to be "in church" but nothing compared to being physically present today. To God be the Glory, great things He has Done!!! That thought has been on our hearts all week and guess which song was sang right off in church this morning?? You got it! "To God Be the Glory" We are so thankful for His mercies & grace with Emma Grace's miracle in progress. God is continuing to heal her little body daily. She is doing pretty well after round 2 of chemo and the steriod presence has been more "tolerable" since they reduced her dosage to once daily. Whew! Thank you Lord! Dr. Santana has arranged for all our lab work to be done here through our pediatrician, Dr. Muriel, twice weekly to monitor primarily her ANC & platelets as well as possible infections. Should she start fever as we did after round 1, Dr. Santana has coordinated protocol for hospitalization here for IV antibiotics and labs. Hopefully, this will enable us to stay home until round 3 back at St. Jude's on Dec. 2nd. Once again we must remind you that God has richly blessed us with the best of family and friends. We do not begin to know how we could repay you for your outpour of generosities, kindness, support, love and prayers. You are brought to the Throne of God daily asking for extra portions of His blessings on you. We love you and thank you for your continued prayers. Only by His Grace, Emma Grace, Bubba Eli, Daddy Barney, & Momma Trish P.S. We want to share this with you that my dear nephew & wife, Jimmy & Shelbi, had reminded us of by email. NIV Romans 5: 1-5 says, "Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perserverance; perserverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us." God Bless!

Friday, November 15, 2002 at 12:06 AM (CST)

Good Day to all! God is Good!! Emma Grace is doing extremely well with her 2nd round of chemo - which should be finished on Saturday. The docs say we should have a 24 hr round of fluids after last dose of chemo then HOME HOME here we come!! Monday? (Specific prayer that all goes well to keep on schedule ... thanx) Everyone is super-home-sick and we know Mr. Eli is ready to see Momma, Daddy and more importantly baby sis!! The plan is to have the labwork completed twice weekly at home then back to Memphis Dec. 3rd. So far, the only "hitch" of this round has been a 2 yr old on steriods! Whew! Talk about needing an extra portion of patience but once they saw it was controlling the nausia (none this time so far) they reduced the dosage to only pre-med prior to chemo. YEAH!! She's acting more like our little angel again instead of Miss Toddler WWF. MORE REMARKABLE NEWS!!! You recall this 7 lb tumor we came with - which was about 1/4 of her body weight at the time her weighing in at 31.8 - well, this child now weighs 36.5 with the golfball size tumor!!! She is starting to get those chubby cheeks and thighs (like her Momma, bless her heart)!!! God's hand at work is an awesome thing! Everyday His love meets us on every turn and our minds have trouble comprehending the love He shows us especially through you. What a blessing you are ... thanks! We pray for His blessings upon each of you. We love you! Keep those prayers a rollin'!! Only by His Grace, Emma Grace, Daddy Barney & Momma Trish

Tuesday, November 12, 2002 at 12:59 AM (CST)

WOW!!! A whole week has went by and we have been lost not being able to visit with you via the net!!! Sorry, but Ronald's house got a computer bug so they are out of service for the time being so we had to wait to touch base from St. Jude's. SO ... LET US TELL YOU THE BIGGEST BLESSING YOU CAN IMAGINE!!! We had a clinic visit with Dr. Santana today (Monday actually) and he was checking Emma Grace's stomach for this 7lb-size-of-two-grapefruits tumor we came to Memphis with....WELL!! He had a hard time finding it!! He said it is now the size of a GOLFBALL!!!! A GOLFBALL?!? He is as thrilled as we are and please keep in mind, he is a very conservative physician. How marvelous God works!! We knew that God sent us here for a miracle but we had no idea we would see such remarkable results with only one round of chemo behind us. How could we be surprised when this is exactly what we asked Him for? He said all we need is faith the size of a mustard seed, right?? It is absolutely breathtaking to see His mercy and grace and His overwhelming power at work. We only wish you could see Emma Grace's little tummy right now and you would agree ... she's a miracle. Every step of improvement is only by God's grace and we are so thankful!! So, if you think you are hearing excitement in our voices through this message ... well, you couldn't be more correct!! We are back inpatient starting 2nd round of chemo sometime in these wee hours for 5 days, followed by 24 hrs of fluids and then HOME-HOME! We are hoping to be home-home by Monday. We should be home about two weeks before the 3rd round of chemo starts. This round of therapy she is getting ready to start this morning is very likely to cause permanent hearing loss. We pray God protects her little ears. Thank you so much for your support which is absolutely overwhelming, your continued prayers which we see and feel strength and healing daily from and most of all, your love & friendship which we treasure. We love you and you know what to do ... KEEP THOSE PRAYERS A ROLLIN'!!! Emma Grace, Daddy Barney & Momma Trish

Wednesday, November 06, 2002 at 12:22 PM (CST)

NEWSFLASH!!!! ANC STILL CLIMBING....NOW 700!!! We are at Ronald's house and boy oh boy, did Emma Grace go wild!!! Bless her little heart...she felt like a bird out of the cage!! She is doing very, very well. The appetite is slowly increasing and just feeling better!! Daddy & I always feel better when our baby girl does as well. We have met so many wonderful people here that God has placed in our paths...whether it be nurses, docs, associates, other patients or family...all here for the same reason we are...miracles. What a wonderful blessing! He always know just what we need even when we don't have a clue. Ain't He the Best??? Well...gotta close and you can never know what blessings you are to us daily. We love you! Emma Grace, Barney & Trish

Tuesday, November 05, 2002 at 08:46 AM (CST)

Whoo Whoo!!!! OUR ANC IS 600!!!!!!!!!!!!!!!!!! Dr. Sapp has not been in yet but we hear Ronald McDonald calling!!! Amazing, just amazing...we ask God for 500 or even close to 500 and He gives us 600!!! What an awesome God He is!!! Thank you prayer warriors!! We will be in touch and we love you all!! Emma Grace, Daddy Barney & Momma Trish

Sunday, November 03, 2002 at 01:27 PM (CST)

OUR ANC (WHITE BLOOD CELL COUNTS) ARE RISING! HALLELUJAH!! Emma Grace is feeling better and is making improvements on her appetite. The Docs are concentrating on keeping the blood pressure down so we can hopefully, be an outpatient by Tuesday!! Barney & I are humbly overwhelmed and amazed of how God is SO GOOD & GRACIOUS by sending the troops on Emma Grace's behalf. We received a phone call from Denise last night concerning the benefit...we could not believe our ears of the generosity that you have shown to our family. You all are astonishing and how could we even begin to tell you how our hearts are overflowing for your kindness?? That is just God's love at work ... bottom line. We don't begin or pretend to know of all the hard work & efforts by so many that went into the benefit. Thank you so much and again, "thank you" seems so lacking in definition of our appreciation and love for you all. We are so richly blessed in seeing God's grace & mercies at work through you and most of all, His love. WOW!! Is He not SO GOOD?!?!? God Bless you all! Its hard to try to close as so much is in our hearts that we are having a difficult time in relating to you. So, we will close in sharing this verse... 2 Corinthians 12:9 "And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." Thank you God for Your word. In His Love, Emma Grace, Barney & Trish ps...we love you & keep those prayers a rollin'!!

Saturday, November 02, 2002 at 07:45 AM (CST)

Give you two guesses where we are still at?? We haven't seen the labwork yet to know if we have improving ANC yet but praying that starts to climb...TODAY. Yes, today would be a good day. Emma Grace actually was off any IV meds yesterday for about 2 1/2 hrs so she was able to run free from the "POLE" for awhile. She was thrilled!! She put on those Clifford the Big Red Dog slippers and off we went! We came out into the lobby area, played the jukebox and just chilled out with different surroundings. I40 is right next to the hospital so she enjoyed seeing the big trucks roll by. Imagine her being like her Mommy, Daddy and Bubba Eli liking big trucks! ha! The doctors have increased her blood pressure meds and added another one as we are having a time keeping her blood pressure down. The increase is characteristic to the tumor and the left kidney being out of position but the doctors feel this is temporary as the tumor is still shrinking (YEAH & AMEN) and once the kidney is able to reposition that will take care of the blood pressure issue. Halloween was HUGE at St. Jude's with every section and clinic decorated to the hilt. Princess Emma Grace figured out real quick to open her bag and they would load her up with candy! ha! We have met so many wonderful families here and what added support plus encouragement they are to us. God places just the right folks in your path when you need to see His light the most. Thank you all for your continued prayers and kindness! This website has been such a blessing to us and hopefully, to you as well. We are praying the numbers to go up & blood pressure down then Ronald, here we come!! Have a great weekend...We love you all! Emma Grace, Daddy Barney & Momma Trish

Wednesday, October 30, 2002 at 09:52 PM (CST)

As you can only imagine...going beyond all means at St. Jude's is just the standard. They are decorating each wing, each clinic, X-ray sections, etc. (you get the picture) for Halloween. We are on the 2nd floor, 2 South to be exact and our theme is the Wizard of Oz. I have had a hoot of a time making paper mache` flowers and construction paper panies. (which I have not done in 25 yrs.) But talk about therapeutic!! Then tomorrow we get to go "trick or treat" each section. Emma Grace is wearing the tiara (of course) and a foo-foo dress...we're going to be the little princess assistant to the Good Witch,Glenda. We are still waiting for our ANC to climb then we can get out and about. Love you all and thank you so much for keeping those prayers a rollin'!! A quote from a cool email we received: "If God brings you to it, He will bring you through it."

Monday, October 28, 2002 at 03:00 PM (CST)

Tis Monday and we're still gaining ground!!! Dr. Santana was in this morning and is typically a very conservative doctor (which I fully understand how he would have to be) BUT!!! He even commented how "encouraging" it is to not be able to see the tumor but only by feeling for it!!!! God sure has a way of getting even the "necessary skeptics" to broaden a smile and give us words of encouragement. We are still waiting for the ANC (white blood cell count) to get off of the bottom so we can go to outpatient status again. We'll be out before you know it, then look out Memphis!! Emma Grace will be a ramblin!! Love you all & Thanks more than you know!! Emma Grace, Daddy Barney & Momma Trish PS...We are starting to resemble Daddy with the thinning hairstyle. I chance to say by Tuesday or Wednesday she will be our miniature "Shaneade O'Connor" (spelling wrong I know but you know who I mean!!ha!) Thats just fine...all part of those mandatory steps to get that miracle God sent us here after!!! Momma may have to wear doo-rags (spelling??haha)right along with her baby girl!! ;)

Saturday, October 26, 2002 at 06:56 AM (CDT)

Howdy-Do All! We are still inpatient and praying our white blood cell count will start improving soon so we can get back to Ronald's house. Emma Grace is such a little trooper and has taken everything pretty much in stride. They have her on IV nutrition as she doesnt feel like eating or drinking anything which is pretty much expected. We have met so many wonderful people here...who all are here for the same purpose - very sick dear children. The other patients we have met are such an inspiration as they keep encouraging us to hang in there thru this phase Emma Grace is in - they've been there and know how it is. Emma Grace has met other patients that come by her window to wave or make faces thru the blinds. ha! Thank you for your continued prayers and support...we love you! God has so richly blessed us with you! Emma Grace, Daddy Barney & Momma Trish

Wednesday, October 23, 2002 at 12:19 PM (CDT)

Well.....we started a fever this morning about 5am which was expected due to the "aggressive chemo" Emma Grace received last week. Her white blood cells, ANC, has bottomed out to zero so we are back inpatient. This was pretty much on schedule but just would not be sure when her numbers would hit the bottom. We should be inpatient for 5-7 days depending on when they start going back up. We had a MIBG scan this morning which is nuclear medicine to pinpoint the exact location of tumor - what it is close to, etc. Please pray that is the only mass they find as this scan will also determine that info for us. Thank you so much for your support & prayers. We love you and we're in room #2061 now. 901-495-5261 Talk to you soon! Emma Grace, Daddy Barney & Momma Trish

Wednesday, October 23, 2002 at 06:53 AM (CDT)

Well....we are loving Ronald's house and havent even had a good chance to get down to serious playing yet!! It's just really nice getting to stay together in a room. Ronald has a great house!! My numbers are down which they tell me is typical for chemo. I have to come back and get the red stuff when the numbers are really low and Momma has to take my temperature all the time. In fact, we had to come back to let them take some red stuff to do lab work cause I gotta temp. Well, we love you and will be letting you know what's going on with me and my friends @ St. Jude. Thanks for all the prayers! Love you!! Emma Grace

Monday, October 21, 2002 at 04:17 PM (CDT)

Well...I'm still in St Jude's as inpatient but hopefully, they are going to release me this evening to go spend the night with Mommy & Daddy @ Ronald McDonald's house. I can't wait to see all the cool stuff Mommy & Daddy told me about there. I am doing really good. They are giving me "red stuff" (shhhhh! blood) to make me feel better so I can leave tonite. I got the itchys really bad when they gave me the red stuff yesterday and the day before. So the Docs put some different meds in me so hopefully, I wouldn't have another reaction. Works good so far!!! God has really been good to us sending friends & family like to for me, Daddy & Momm