History

Saturday, January 5, 2008 8:20 PM CST

Baby Jay,

Happy Birthday to my sweet baby boy! It is hard to believe that you would be seven today!

Tanner corrected me recently that you are not a baby, but a big boy. It reminded me of a time we were in the carpool line picking Sissy up from school. The line seemed to be moving slower than usual, and you were getting a little impatient. Wanting to checkout the situation, you stood up in my lap, opened the sunroof, and poked your little baldhead out the top of the car. As we approached the front of the school, a few of the students began pointing and saying, “Look at the baby!” You quickly ducked back into the car and sank into your seat. Of course, I wanted to jump out and defend you by kicking some first-grade booty (You know that Mommy doesn’t play!). But instead, I tried to change the subject and pretend that I didn’t hear their hurtful words. After a few minutes of listening to me ramble, you interrupted me and said, “Mommy, those boys just called me a baby.” I reassured you that you were not a baby, but a big boy and that those boys didn’t know what they were talking about. I must have been rambling again, because you stopped me abruptly and declared with confidence, “But Mommy, I will always be your baby.”

I couldn’t agree more. You will ALWAYS be my baby.

Love you and miss you more each day,

Mommy

Saturday, October 6, 2007 9:47 PM CDT

I have started a new blog aimed at helping father's fighting cancer with their children. I hope that father's find my posts helpful. The link is listed below. Thank you to all who continue to check in on us. It is very humbling to see what God is doing with our lives after our great loss.

In His Grip, Jason

Saturday, March 31, 2007 9:11 PM CDT

Baby Jay,

Today is the one-year anniversary of your Heavenly homecoming, and today, your beautiful, purposed-filled life was honored as Jay’s Hope strived to save another. Our Community-Wide Bone Marrow Drive registered over 200 potential Bone Marrow Donors and we are expecting even more tomorrow. That will bring our grand total close to 900 donors in less than a year. God has truly blessed the mission He has laid before us, and you, my sweet baby, are still touching lives and extending HOPE through Jesus Christ. I am so honored to be your Mommy.

Mommy, Daddy, Sissy and Tanner miss you more than words can say and we love you to the moon and back. We are longing for the day that we can be together again and find comfort that each day brings us one day closer...

Love,
Mommy

Saturday, January 20, 2007 7:17 AM CST

On Wednesday, we lost another one of our local Pediatric Oncology teens. Rebecca was 17 years old and had been battling ALL. She was in remission, but passed away from a deadly infection. Please pray for her family.

Our sweet friend Catie past away Thursday night from complications of treatment. Catie and Jay were diagnosed with the same cancer within a few weeks of each other.
Jenny, Catie's mother is 9 months pregnant with their second child. Please pray for this family.

caringbridge.org/ga/catie

It just crushes me to know that yet another family has to endure this grief.

Friday, January 5, 2007 10:00 PM CST

Happy Birthday my sweet baby boy! As hard as today has been for us, seeing how much you are loved by so many people, was soothing to my soul. Did you see all the support for Jay’s Hope in honor of your special day? Even from heaven, you are still touching lives here on earth. What an honor it is to be your Mommy. Be sure to thank God for the most beautiful and brightest double rainbow I have ever seen. Right after a dreary day of rain and directly over Chick-filA....what perfect timing.

I love you sweet boy...Mommy will always love you.

Saturday, December 30, 2006 1:48 PM CST

Jay's Birthday Party/ Fundraiser

On Friday, January 5th, 2007, Chick-Fil-A(Tom Hill Sr. Blvd) is teaming up with Jay's Hope to celebrate Baby Jay's Birthday. Please help us to honor this very special day by eating at Chick-Fil-A(Tom Hill location only) for Breakfast, Lunch, or Dinner(or all three!).

Go to www.jayshope.org and click on "Jay's Birthday" to print off a flyer. Present the flyer to your cashier and a portion of the proceeds will go to Jay's Hope.

You are also invited to a Birthday Party for Jay at 5pm. Join us at Chick-Fil-A for dinner, cake, ice cream and a balloon release! Jay would be turning six-years-old. It will be a bittersweet day for all of us, but you can help to make it a little bit brighter!

Thank you!
Cindy, Jason, Kaitlyn and Tanner

Wednesday, December 27, 2006 7:19 PM CST

Urgent Prayer Request:

John Justice is a 4 year old little boy who desperately needs your prayers. He has ALL(Leukemia) and is currently in the Pediatric ICU(Macon, GA), on the vent and battling a life-threatening infection. We are praying for wisdom and guidance for John’s medical team, optimism and unity amongst all the doctors and nurses caring for him, and most importantly, for his earthly healing.

Please forward John’s name to everyone you know.

In HOPE,
Cindy

Monday, December 25, 2006 8:54 PM CST

"May the God of HOPE fill you with joy and peace as you trust in Him." Romans 15:13

Wishing you a Merry Christmas and a New Year filled with joy, peace and HOPE...

Missing our Baby but Trusting Him,

The Gaskins Family

Wednesday, December 13, 2006 8:14 PM CST

Bear with me….a detailed update is coming, but there several things I need you to be aware of.

Tomorrow, Friday, and Saturday (Dec. 14th-16th), The Children’s Hospital Radiothon will be on 93.7 here in Macon. Jay’s story will be played throughout the three days and Jason and I are being interviewed Saturday morning at 11am. I will be answering phones on Friday from 11am-1pm and again on Saturday from 1pm-3pm. CALL ME and pledge a donation in memory of Jay. You can also give an online donation at www.z937.com This year, we have lost 5 local children to cancer. There will be a tribute page to these children on www.z937.com

Next Tuesday, December 19th, Jay’s Hope will be providing a Christmas Dinner for all the inpatient families. If you are interested in providing a side or dessert, please contact me by email: cindy@jayshope.org or by calling me: 256-1914

On Christmas Day, Jay’s Hope will be delivering Teddy Bears and blankets to all the inpatient children at the hospital. We are still in need of NEW Teddy Bears and NEW Blankets. Currently, we have plenty of baby blankets, but still need child to teen size blankets. cindy@jayshope.org

Check back soon to hear about our wonderful weekend in Memphis and our amazing Christmas Party for the Pediatric Oncology Families.

In Hope,
Cindy

Thursday, November 30, 2006 9:21 PM CST

The Jay’s Hope Running Team is off to Memphis tomorrow for the St. Jude Race! Many prayers needed for safe travel and that we make it through the race! Seven of us are running/walking the 5K, Seven are running the ½ marathon and one SUPER WOMAN named Lisa Troup is running the full marathon. We have a full weekend of activities planned and are looking forward to it!

Thank you to everyone who sponsored our team. Just last weekend, I was getting a little worried about meeting our goal of $10,000. We were short about $2500. While I was in Brunswick for the holidays, I was telling my parents that we all just needed to pray about it. No lie, one hour later, Jackie(a Jay’s Hope team member) called to tell me that she had just received a sponsor for $10,000! What an awesome God we serve! I was praying for $2500 and God blessed us with $10,000! We have almost doubled our goal! WHOOHOO!

You can still show your support by going to our team page.

http://www.stjudeheroes.org/site/TR?team_id=2900&pg=team&fr_id=1430

I will be sure and update with lots of pictures when we return!

Thanks for all your support!

In Hope,
Cindy

Thursday, November 23, 2006 4:02 PM CST

Jay's Hope Running Team needs your help!!!!

In just one week, 15 of us will be traveling to Memphis to run in the St. Jude Marathon in memory of our sweet Baby Jay. Our goal is to raise $10,000 for St. Jude. So far, we are at 72 percent of our goal and have one week left to meet the $10,000. Would you help us? Would you help us to honor Jay by giving a donation to a hospital that is diligent and committed to finding a cure for the cancer that took my baby's life?

Please copy and paste the link below and sponsor one of our team members. No gift is too big or too small....just give from your heart. There is also a link at the bottom of the page.

http://www.stjudeheroes.org/site/TR?team_id=2900&pg=team&fr_id=1430

Thank you and God bless.

Happy Thanksgiving!!!

In Hope,
Cindy

Tuesday, November 7, 2006 1:25 PM CST

Happy Birthday to Tanner! Tanner is three-years-old today! It is hard to believe that it has been three years.

On November 7th, 2003, I was in a foreign town and in a foreign hospital giving birth to our third child. Across town, my Baby Jay was inpatient at St. Jude receiving his second round of Chemotherapy. What was suppose to be a joyous time in our lives was overshadowed by Childhood Cancer. Don’t get me wrong, Jason and I were thrilled to be welcoming a new little one into our family, but at the same time, I was experiencing a lot of guilt. Guilt that I was not with Jay. Guilt that instead of taking my newborn “home”, I was taking him back to the Target House. Guilt that he would spend the first six months of his life separated from his Father and Sister. Guilt that I had to rely on others to help me tend to my baby so I could take care of Jay. Guilt that hospitals and doctor’s offices were a way of life and “normal” to him. Guilt that I couldn’t just be a new mother of three and only have the worries of sleepless nights and colic.
Oh what I would have given for ONLY no sleep and a cranky, crying baby...But instead, I had all that and a child with cancer. Many times, I would hold Tanner and tell him how sorry I was that he would never know what it was like to have a “normal” life. It was heartbreaking for me that part of his innocence was taken away at birth.

I know that I had no control over my situation. But being a Mommy, I was suppose to be able to protect my children. All three of them. And I failed miserably.

Tanner,
Mommy and Daddy love you so very much. We are thankful for you and know that you were part of God’s plan for our lives. You and your sissy are what keeps us going and I promise to make- up for all those times I couldn’t be there for you. We love you big boy...Happy Birthday!

*The St. Jude 1/2 Marathon is just a few weeks away and the Jay's Hope Running Team needs your help! We are running in memory of our Baby Jay and have pledged to raise $10,000 for St. Jude. Please consider sponsoring us by giving an online donation. You can give as little as $10 to help us meet our goal. There is a link at the botton(first link) of this page and then you can click on one of our many team members to show your support.

Thanks for your support!

Thursday, September 21, 2006 11:48 AM CDT

Arrangements are currently being made for Shaun Floyd. Shaun was one of our kids we were doing the Bone Marrow Drives for. He passed away last night under the care of Hospice. His mother is a single mom, does not have insurance and currently does not work due to Shaun's extended illness. Jay's Hope has set up a fund for funeral expenses so his mother can plan a proper service and burial for her son. If you would like to make a donation please make checks payable to Jay's Hope and send to:

Jay's Hope Foundation
1013 Porter Circle
Gray, GA 31032

Please note that it is for the Floyd Family.

Thank you for your support. Please pray for peace and comfort for Shaun's family.

Cindy

Sunday, September 3, 2006 7:37 PM CDT

Our local newspaper did a story on Jay and the Jay's Hope Foundation. Here is the link:
http://www.macon.com/mld/macon/news/local/15429127.htm

You can also read the story on the jayshope.org blog. Go to the www.jayshope.org website and click on blog.

Thanks!
Cindy

Thursday, August 31, 2006 4:07 PM CDT

It has been five months today, that Jay went to be with Jesus.

To be honest, I struggle with what to write on this website. I come here wanting to share my grief with you, but most of the time, I am at a lost for words. I mean, do you really want to here how heartbroken I am, how Jason and I struggle daily without Jay, how sadness and anger creep in when I least expect it, how hard it is to explain to a two-year-old that his big brother is not coming home, or how difficult it is to get a seven-year-old to open up about her own grief? Do you really want to hear all that? Or do you come here for words of comfort, because on the outside, the Gaskins family appears to be doing okay?

I try to be strong, I try to be courageous, I try to be invincible....

But all I really am, is a grief-stricken Mama who misses her baby boy more than I could ever express with just words.

And that my friends, is how we are really doing.

Tuesday, August 8, 2006 8:09 PM CDT

I have been journaling regularly in the Jay's Hope Blog. I plan to keep this caringbridge webpage on a more personal level. The Blog will be more for the foundation stuff and my life as a Director or something...

There is a link to the Blog on the introduction page at jayshope.org

Please stop and visit! You can also leave comments there. I am planning to update this page very soon.

Thanks for checking in!
Cindy

Tuesday, August 8, 2006 8:09 PM CDT

I have been journaling regularly in the Jay's Hope Blog. I plan to keep this caringbridge webpage on a more personal level. The Blog will be more for the foundation stuff and my life as a Director or something...

There is a link to the Blog on the introduction page at jayshope.org

Please stop and visit and you can also leave comments there. I am planning to update this page very soon.

Thanks for checking in!
Cindy

Friday, July 28, 2006 10:07 PM CDT

Jason and I are proud to announce the new Jay’s Hope Foundation website!

Please visit us at: http://www.jayshope.org

-Cindy

Tuesday, July 18, 2006 3:50 PM CDT

"I can do all things through Christ who strengthens me" (Phil. 4:13)

Jay’s Hope is forming a team of runners and walkers to participate in the St. Jude Road Race on December 2nd, 2006 in Memphis. The money raised will go directly to St. Jude in memory of our sweet Jay. We are currently recruiting team members to run or walk the 5K, the Half Marathon, or the Marathon. If you are a walker, a runner, a use-to-be runner, or even a wannabe runner please consider joining us! There is a link at the bottom of the page to join our team and a link to a training schedule. If a race is just not your thing, you can still show your support by giving a donation towards our fund-raising goal. We have set our goal HIGH and would like to raise 10,000 for St. Jude, but need your help to do so! The first link at the bottom of the page(Jay’s Hope Team) is where you need to go to show your support!

We are planning a local Jay’s Hope Team meeting for the first week in August. At that time we will discuss fund-raising, training and our trip up to Memphis. You do not have to be local to join the team. We will keep you informed via email or phone.

Please feel free to contact me with any questions and thank you in advance for your support!

Go Team!
Cindy

Sunday, July 9, 2006 7:20 PM CDT

Love In Action

"Dear children, let's not merely say that we love each other; let us show the truth by our actions." (1John 3:18)

The Bone Marrow Drive was a HUGE success!!! We registered 113 new potential donor to our National Bone Marrow Registry! Jason and I thank God for touching these people’s hearts with the desire to help others and for allowing Jay’s Hope to be a part of this ministry. We were able to witness “real love” in action through everyone who came out to be tested and through all our wonderful volunteers and contributors. Thank you to everyone who helped out and to those of you that help to provide refreshments. We couldn’t have done it with out you! I also want to thank Kroger on Watson Blvd. in Warner Robins for donating snacks and to Sonny’s Barbeque for providing lunch for all our volunteers.

Over the next six weeks, we have three more drives scheduled in the Macon area. Please consider becoming a trained volunteer through the National Marrow Donor Program. Training sessions are scheduled for July 13th and July 20th at the Ronald McDonald House of Central GA from 5pm-8pm. You only have to attend one session, free of charge, and dinner is provided by Jay’s Hope. Please contact me if you are interested.

13 WMAZ covered the drive today and Jay’s Hope was featured on the evening news(6pm and 11pm). You can also read the write-up on their website. 13wmaz.com and the story is under the sports section. There is a great picture of Jason swabbing his cheek for the testing!

Thanks for checking in on us!

Love,
Cindy

Baby Jay~ Mommy loves you and misses you more and more each day. It is so hard to believe that it has been over three months since you went to be with Jesus. My sweet boy, your battle is over and has been WON, but Mommy and Daddy have been left here to continue the fight in your name and for God’s glory. With God’s help, Jay’s Hope will continue to touch lives with your same fighting spirit and spread the message of HOPE. Love, Mommy
***************************************

You have a chance to win the St. Jude Dream Home® giveaway, and there are many other great prizes up for grabs! Winners for the St. Jude Dream Home giveaway and other prizes will be drawn during the St. Jude television special on 13 WMAZ, July 16, 2006.
Grand Prize:
The St. Jude Dream Home house valued at approximately $325,000 and built by Moon Family Properties
Other Prizes Include:
$1,000 gift certificate to The Vineville Salon
$1,000 gift certificate to Backyard Basics
two one-year memberships to Gold's Gym
$1,000 gift certificate at Hancock Fabrics
two vouchers for roundtrip airfare from AirTran
$1,000 gift card, courtesy of BB&T
phone and accessories from Cricket Communications
Atlanta Motor Speedway packet
$1,000 worth of gasoline from Davis Oil Company
1 year family membership at Perry Country Club
plus more!

You can purchase a $100 ticket on line at stjudedreamhome.org

Thursday, July 6, 2006 12:01 AM CDT

ATTENTION LOCALS:

We are in need of refreshments for this weekend's Bone Marrow Drive on Sunday, July 9th. We are expecting an overwhelming response from the Warner Robins community and need to have cookies, brownies, cakes, chips, snack mixes, drinks, etc... to offer potential donors. It does not have to be homemade, store-bought will do!

If you can help, please call me and I will arrange pick-up. Thanks so much!

Cindy
986-4966 home
256-1914 cell

Also, if anyone would like to volunteer at the drive or would like to be tested, contact me!

Thanks for your support!

Monday, June 26, 2006 6:15 AM CDT

On Father’s Day Sunday we sang “It Is Well With My Soul.” Horatio Spafford wrote this song shortly after a couple of traumas in his life. The Great Chicago Fire of 1871 ruined him financially. A couple of months later his four daughters died in a shipwreck. Spafford said that the Holy Spirit had inspired him to write this song as he was passing the approximate spot where his daughters perished.

Singing the song on Father’s Day gave me a peace I have not felt in a long time. While still heartbroken over Jay’s departure, I am leaning on God for His peace that exceeds all words. We have eternal hope - no matter what pain and grief happens to us here on earth. It is well with my soul that Jay is in God’s loving arms right now.

Someone asked me if Father’s Day was a “tough” day for me. I said no Mother’s Day was much worse. After saying that I thought, what did I just say? This lady thinks I’m crazy or gender confused. I cannot explain why Mothers Day was tougher except that it was closer to Jay’s departure for Heaven than Father’s Day. We can only imagine what Jay is seeing in Heaven right now. We look forward to the day he greets us in Heaven with his head full of hair - we do hope he still has his crooked little smile.

Cindy and I continue praising Him in this storm because we have the assurance that He has never left our side. “I will never leave you nor forsake you.” Hebrews 13:5b

Peacefully in His Grip, Jason

***************************************
**UPDATED JUNE 23**
Our local news (channel 13 WMAZ) is featuring a story on Jay's Hope Foundation and our involvement with the Bone Marrow Drives. It will air tonight during the 11:00 news and during the Weekend Morning Show tomorrow sometime between 7am-9am.

Also, a story about Chris and Shaun(the boys who need to find a bone marrow match) will be airing sometime next week, and our first committee meeting on Thursday may also be covered. Stay tuned...lots of good stuff coming your way!

You can also view the write-up at 13WMAZ.com and there is a link posted in the guestbook. Please join Jay's Hope for this worhty cause. We need people like YOU to make it happen!

DO IT FOR BABY JAY!
***************************************

You May Be Their Only Hope!

Christopher Johnson and Shaun Floyd from Macon, GA, are both battling Childhood Leukemia. These two young men have been through months of intense Chemotherapy. Due to a relapsed, they are both in dire need of a Bone Marrow Transplant. Chris is a sixteen-year-old African-American football player at Northside High School and Shaun is a sixteen-year-old African-American track star for Central High School. Their family members have all been tested with no luck of finding a match, and so far, there are no matches on our National Bone Marrow Registry. Chris and Shaun’s race plays a significant factor in finding a match because the compatibility increases among people of the same ethnicity. Of the more than 5.5 million people registered around the world, only about 430,000 are black (eight percent)

Jay’s Hope Foundation is teaming up with our local hospital, The Children’s Hospital of Central Georgia, in the planning and coordinating of several Bone Marrow Drives in our area. Our goal is to target African-American churches and to encourage them to host and promote a drive. The first Bone Marrow Drive is scheduled for Sunday, July 9th at Fellowship Bible Baptist Church in Warner Robins from 9:30am-2pm. Minority testing will be FREE of charge and non-minorities will be asked to pay a $52 fee to cover the cost of testing. Limited sponsorships will be available for non-minorities who are unable to afford the testing fee.

How you can help:

*We are having a meeting on June 29th, 10:00am at the Medical Center for Central Georgia for anyone who is willing to help out with the planning and coordinating of the drives.

*Have your church host a drive.

*Refreshments are currently needed for the July 9th drive.

* $52 Sponsorships are needed for non-minorities who want to be tested but are unable to afford the fee.

*Donations are needed for advertising cost(Flyers, posters, signs, and promotional video). Creative Images has graciously offered to help us with all our advertising needs at a reduce rate, and an estimated cost per drive is $600.00.

*And most importantly, please make the commitment and become a registered Bone Marrow Donor. You could be the miracle match for the more than 35,000 children and adults in our country who have been diagnosed each year with diseases for which a bone marrow transplant or blood cell transplant could be the cure.

Important Facts:

*Every year in the United States, more than 30,000 people are diagnosed with Leukemia and other fatal blood diseases. For many, their last hope for survival is a marrow or stem cell transplant. But first they must find a miracle match from an unrelated donor.

*Every day, the National Bone Marrow Registry receives close to 3,000 inquiries from patients who are looking for a match.

*Every nine minutes, a patient dies. We often take life for granted, but there are thousands of patients who are just struggling to stay alive.

What if you were the last hope for a child who is dying?

For more information or if you are interested in helping, please contact me by email (see link below) or by phone @ 478- 986-4966.

Wednesday, June 21, 2006 7:46 PM CDT

Wednesday, June 14, 2006 9:13 PM CDT

The Ballad of a Wanna Be Movie Star
(To the tune of “The Beverly Hillbillies”)

Come n’ listen to my story about a family from Gray,
Jason, Cindy, Kaitlyn, Tanner and their sweet ^Baby Jay^,
Gotta call from Ms. Tracy about a TV deal,
So, we packed up the truck and headed to Nashville.

Angel Heart Farm that is...Rocky, Cisco and the whole angel gang.

Well the first thing you know, we’re celebrities,
Our very own production company, and a make-up artist just for me.
But, ignoring my protest that I don’t do Mary Kay,
the next thing you know I was resemblin’ Tammy Faye.

Bakker that is....thick makeup, big hair.

The show is ‘bout animals that do amazing things,
Rocky, Cisco, and Buddy will be showing off their wings.
Ms. Tracy, our family, and all the buckaroos,
will be featured on PBS so you can watch it too!

In the Fall that is...Nationwide, check your local listings.

Ya’ll don’t miss it, y’hear?!?

As you can see, we had a very interesting start to our vacation. A production company from Florida is producing a show about amazing animals and Angel Heart Farm has been selected for one of the episodes. While we were in Nashville for the horse show, the production company(which by the way, has won four daytime Emmy awards!) asked if we would be interested in being a part of the show. They wanted to film us as a family hanging out with the horses and interview me about what the program means to oncology families and their children. Of course we agreed, since we just love the spotlight...NOT! But, we do love Angel Heart Farm and would do anything to support the program...even if that requires being on national television. Don’t they say that the camera adds ten pounds? Good golly, I could stand to loss at least ten pounds without the camera, and then on top of that, I had about ten pounds of make-up and hair products applied before the show( have I mentioned that I don’t wear much make-up?). So by my calculations, I will appear to be about thirty pounds overweight and look somewhat like a Tammy Faye impersonator. I am expecting my next cast call to be from “Extreme Makeovers”, or maybe even Jenny Craig is in need of a new spokesmodel...lookout Kristi Alley! With that said, and despite my vanity issues, we actually enjoyed the “celebrity” experience. Kaitlyn and Tanner really worked the cameras, and Jason entertained himself by making silly, bratty demands like, “Where is my Diet Dr. Pepper with three ice cubes, in a blue solo cup with a green straw?” And my personal fav, “I said, I only eat green M&Ms! Where are my green M&Ms?!?”

We felt very honored to have the opportunity to share a little bit of Jay’s story and to tell the world about Angel Heart Farm. Not only did Ms. Tracy and her crew minister to us during Jay’s battle, but they have continued to minister to us through our grief. How many programs do that? Unfortunately, not many. Angel Heart is unique in so many ways, and truly deserves national recognition. Oh, how blessed we are to have them in our lives! We are excited and look forward to the show airing on PBS this Fall. You will have to check with your local PBS station for availability and times.

Well, our next world-wind adventure was to Destin, FL, and my feeling of being “Lil’ Miss Elly Mae Clampett ” continued on with all the unsightly tattoos, body piercings, and exposed body parts that hurt my eyes and tried to corrupted my children! It has been several years since we have visited a beach outside of Georgia, and I quickly rediscovered that there is a big difference in our “redneck” beaches and Florida beaches.
I mean who are those people, and what are they thinking?!? I swear it was worse than a rated “R” movie. I really had to work on minding my Southern manners, and made sure that I added “Bless her heart” to any negative comment that might have slipped out. Us Southern gals have been taught that as long as the heart is sufficiently blessed, you can get away with saying just about anything. For example, “Bless her delusional little heart, she really has no business wearing that bikini”, crossed my lips more times than I can count. Now don’t get me wrong, after spittin’ out three kids of my own, I am far from being bikini worthy, but I do have the common sense to know that I don’t need to be prancing(more like bouncing) around in one. And as far as the other eye sores, which is none of my business, but somehow becomes my business when my seven-year-old daughter is asking, “Mommy, why does that girl have a bunny rabbit with a bow tie painted on her butt?” First of all, it was not painted on, and secondly, THAT was no ordinary rabbit. Bless her heart, that girl is stuck in the eighties and thinks Playboy Bunnies are still cool. Oh yeah, the eighties are making a come back aren't they?

Well, besides being a little shell-shocked with our society’s beach attire, we did have a wonderful time. The weather was perfect, the beach was beautiful, and most importantly, we ate like kings and queens! Thank goodness we filmed the show before vacation, because my “TV weight” would have been plus a few more pounds! Of course, we all missed our sweet Baby Jay being with us. With every activity I couldn’t help but think, “Jay would have loved this!” But I will say, that I did find comfort in knowing that what he is seeing now, far exceeds Destin’s white sandy beaches and crystal blue water....and I assure you, there aren’t any unsightly eye sores in heaven!

Can I get an AMEN!?!

A dear friend of mine emailed me a prayer titled "Joy". After our trip to so-called "Paradise", I thought it would be appropriate to share.

"Let my heart leap towards the eternal Sabbath, where the work of redemption, sanctification, preservation, glorification, is finished and perfected for ever, where thou wilt rejoice over me with joy! There is no joy like the joy of heaven, for in that state are no sad divisions, unchristian quarrels, contentions, evil designs, weariness, hunger, cold, sadness, sin, suffering, persecutions, toils of duty. O healthful place where none are sick! O happy land where all are kings! O holy assembly where all are priests! How free a state where none are servants except to thee! Bring me speedily to the land of joy."

One More Day Closer to True Paradise,
Cindy

Sunday, May 28, 2006 2:46 PM CDT

UPDATED THURS. JUNE 1st:

Just a quick note to let you guys know that we are leaving for vacation tomorrow(Friday, June 2nd). We are headed to Nashville, TN(our favorite place on earth!) for a horseshow that Kaitlyn and Tanner(and Ms. Tracy!)will be riding in. Sunday we will travel to Destin, FL for a week of FUN in the SUN! I will update when we return.

***************************************

Just Two More Minutes....

One of Jay’s most famous sayings was, “Just two more minutes!” Right before bedtime, in the pool, riding his gator in the yard, fishing off the dock, playing over at a friend’s house.....he never wanted the fun to end, and would always try and negotiate for “Just two more minutes.”

Now that school is out and the weather is warm, our summer activities are in full swing. Swimming, cookouts, visits to the lake house, play dates with friends, family vacations to the beach...this was by far, Jay’s favorite time of the year. And then, as soon as the Fall weather would creep in, Jay was already asking how many more months until next Summer! I think he was wishing for “Just two more minutes”, because he didn’t want the fun to end.

For me, Summertime will probably always be bittersweet. Full of such fond memories of my little sun-worshiper , yet longing for Jay to be here to enjoy it. I am afraid that our Summers will never be the same again, and Jay’s vivacious, warm spirit will be greatly missed.

Oh, what I wouldn’t give for “Just two more minutes”....

Wednesday, May 17, 2006 2:58 PM CDT

I really did not know how I would feel on Mother’s Day. So far, everyday has been a very sad day for me, and it was hard to picture it being any different. Jason and I decided not to go to church and avoid all the Mother’s Day hoopla, and we tried to have lunch away from all the crowds....which by the way, seemed impossible to do! After lunch, we decided to go garden bench shopping for the cemetery. Honestly, the cemetery is not one of my favorite places. It is far from being a place of comfort or peace for me, and I really don’t feel close to Jay there at all. Visiting his grave makes me very uneasy and sick to my stomach, because all I can think about is what’s happening to my baby boy’s beautiful earthly body. It can be so overwhelming at times, that it has caused me to avoid going out there. Since Jay’s service, I have only visited every other week to switch out the flowers. We have also slowly bought a few things to place near the grave, and we have ordered a family monument and Jay’s marker. I guess you could say that I am trying to convince myself that if I personalize it, I will eventually want to visit more. Who knows, only time will tell.

So, after finding the perfect wrought iron bench on Sunday, we drove out to the cemetery. Jason placed the bench while I replaced the flowers, and the kids ran around in the grass. Once we had it like we wanted it, Jason and I sat down together on the bench. Staring at the ground, I thought to myself, “This is it? This is how I am suppose to celebrate Mother’s Day? A patch of sod, fresh flowers, a few nick-knacks and a bench. How pathetic is that.” Yep, you guessed it. I had climbed right up on my pity-pot and was having me one heck of a pity-party. A few minutes later, Kaitlyn grabbed my hand and wanted to walk around. Sadly, we know several other children who are buried near Jay, and Kaitlyn always likes to go and visit their graves. She also wants to go from headstone to headstone and read all the names and ages of the deceased. This has become our routine during the few times that I have taken her, but this time, I approached it differently. Instead of just reading off the names and ages, I thought deeply about who they really were and what they might of been to others. An only child, a son, daughter, mother, father, sister, brother, husband, wife....You can usually guess by what is written on the markers, but there are some that leave you wondering. I also found it interesting to see how others tend to their loved ones graves, and then there are those who obviously haven’t had a visitor in awhile. As Kailtyn and I strolled through the cemetery, I felt reality slap me right-upside-the-head and it caused me to readjust my ME-centered attitude. My bitterness slowly turned to compassion, and I began to pray for all the other mothers who have lost a child and for the children who have lost their mothers. I prayed that God would wrap His strong arms around them and give them comfort on this Mother’s Day. And then, in the midst of my prayers for others, God did exactly that for me....He held me close and comforted my aching heart, right there in the cemetery.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. “ (1 Corinthians 1:3-4)

I did a little research on how Mother’s Day was started and wanted to share what I found:

“Ironically, it was a woman who was never a mother herself who led the campaign for the national recognition of Mothers. A woman by the name of Anna Jarvis held a ceremony in 1907 in Grafton, West Virginia, to honor her mother, who had died years earlier. Jarvis' mother had tried to establish 'Mother's Friendship Days' as a way of dealing with the aftermath of the Civil War. After her mother's passing, Anna began a campaign to create a national holiday honoring mothers. In 1914 President Wilson declared the second Sunday in May to be Mother's Day. The day has historically been used by children and other family members to honor mothers and grandmothers for all they do in raising children. Over the years, Mother's Day has evolved into one of the most cherished and celebrated day of the year.”

I found it interesting that through her own grief, Anna Jarvis was able to’ honor others’ by creating a national holiday for all mothers....”The most cherished and celebrated day of the year.”

Wednesday, May 10, 2006 8:20 PM CDT

Everything is Gonna be Alright

At the advice of a friend, I have begun to write down special memories of my Jay. One of my most precious memories, is the countless times Jay and I would snuggle. Even as a baby, Jay loved to lay between Jason and I in the mornings and drink his bottle. I could never resist that soft, sweet bald head, and I would kiss him over and over again. Jason used to say to me, “You are going to kiss that boy to death!” I would just shrug my shoulders and say, “Well, I am going to enjoy it while I can, because one day he will think he is too big for his Mommy’s kisses.” Even as a toddler, Jay would wake-up bright and early and want to lay in bed with us. I can still hear the pitter-patter of his little feet coming down the hall, and his sweet little voice demanding, “Mamma, I want Ba-Ba”.

The day before Jay was diagnosed, I was laying in bed with him, kissing his little sandy-blonde head, and reassuring myself that everything would be alright. I was praying that my Motherly instincts were all wrong. The very next day, on a hard hospital stretcher, I was cuddling my baby boy while a nurse placed an IV in his little hand. This time, I was reassuring Jay that everything was gone to be alright, and praying that I was right. Hours later, after receiving the most devastating news, I found myself holding Jay tightly in a frightening ICU room awaiting emergency brain surgery. This was the first of our many “it’s not alright” moments, but still praying that everything would be alright.

Over the next two-and-half years, cuddling with Jay became more and more special. With each hospital admission, with each visit to the Medicine Room for chemo, and after every sedation, I would wrap my arms around him to reassure him, and myself, that everything was going to be alright...and I would silently pray that I was right. For six months in 2004 and for six weeks in 2005, the boys and I lived by ourselves in Memphis. After a long day at St. Jude, we would settle into our room in the evenings at either the Target House or the Ronald McDonald House. Our nighttime ritual was to put Tanner to bed in his crib, put on a movie, and then Jay and I would snuggle under the covers until we fell asleep. I remember very vividly, holding Jay in my arms, and kissing that soft, sweet bald head, over and over again...just like when he was a baby. I also remember being so thankful that he didn’t think that he was too big for Mommy’s kisses. In the midst of such uncertainty, we both found comfort and security in our nighttime snuggling. It always made everything alright.

At the end of this past December, Jay’s health began declining quickly. The tumors were taking a toll on his little body, and most days, Jay was not himself. All he want to do was sleep, and all I could do was hold him. I would lay with him in bed, wrap my arms around him, and kiss his fuzzy little head. I would whisper to him how proud I was of him, how much I loved him, and that everything was going to be alright. And then, with tears rolling down my cheeks, I would cry out to God in my head, “Please God, make it alright!”

During our fifty day stay in the PICU, mine and Jay’s snuggle times were few due to all the wires and tubes he was hooked up to. I wasn’t able to hold him much, but everyday, I would lean over the railing of his hospital bed, and cover his soft, sweet bald head with kisses. I would whisper in his ear that I loved him and would reassure him once again, that everything was going to be alright. On March 30th, 2006, Jason and I were told that the swelling in Jay’s brain had worsened, and that there was a strong possibility that he was brain dead. That night, our nurse repositioned Jay and all the wires and tubes so I could crawl into bed with him and snuggle. Jay was unresponsive, and his little head was as cold as ice, but I still couldn’t resist kissing him over and over again. I held him tighter than ever, and through my tears I whispered, “No matter what, everything is going to be alright.”

The next day at 1:59pm, God took Jay from my arms and into His, and in the blink of an eye, He made “Everything alright”.

Every night as I go to sleep, I close my eyes and envision wrapping my arms around Jay and kissing his soft, sweet bald head over and over again. Through my nightly tears I whisper, “Mommy loves you baby”, and Jay always whispers back, “Mommy, everything is gonna be alright.”

Saturday, April 29, 2006 8:08 AM CDT

The Secret to Longevity?

My Great-Grandmother “Big Mamma”(who by the way, was about 4ft tall and 100lbs soaking wet!), died at the ripe-old age of one hundred. She had raised seven children, had oodles of grandchildren, great-grandchildren, and even lived long enough to meet many of her great-great grandchildren. She had seen it all, done it all, and lived it all. Every year, our family would throw a family reunion/birthday party to celebrate and to give thanks for another year with our Big Mamma. Her children would rent out a local barbeque joint, hire an oldies-but-goodies band and buy her a fancy dress. I can see her now, in her sparkling sequine dress, wearing a corsage as-big-as-Texas, and tearin' up the dance floor to her all-time favorite song, “Elvira”. When she was in her late nineties, the local news started showing up at her birthday bashes wanting to know what her “secret” was for living so long and staying so healthy. Cameras rolling, microphones ready, and everyone would be sitting on the edge of their seats waiting to hear how they could all live to be a hundred. Big Mamma would smile, bat her hazel green eyes, and then with her unforgettable raised-in-the-south accent would answer, “Well honey, everyday of my life, I take a BC Powder Aspirin and chase it with a Coca-Cola.” The reporters would look so baffled, maybe even a little disappointed. But I always wondered how many of them ran out and stocked-up on BC Powders and Coca-Colas. And then, after Big Mamma’s story aired on the local news, how many viewers bought into her secret of, “A BC Powder a day keeps the doctors away”? I won’t mention any names, but I know for a fact that several women in my family have even tried Big Mamma’s remedy, only to develop stomach ulcers and acid reflux. So much for “The Secret to Longevity”!

Big Mamma lived to be hundred, and our Baby Jay lived to be only five. Shaking our heads in disbelief, we all question how could this be? We mourned Big Mamma’s death because we knew that she would be greatly missed, but with Jay’s death, our grief is so much more than that. Our sorrow goes deeper than just missing his daily presence. Not only do we grieve for our son, but we are also grieving for the unfulfilled dreams and the unlived tomorrows. We grieve for the “what-could-of-been” and the “what-should-of been”. In our eyes, Jay would have been the best father, grandfather, and even a wonderful great-grandfather. If anyone deserved to live to be a hundred, he did. Since the day Jay was born, I had envisioned many years of birthdays, holidays, family vacations, graduations, a beautiful wedding, the birth of his children....but never, not even when Jay’s health was failing, did I envision a funeral. Jay was suppose to outlive me.

He was too young to die...

In Traveling Light, Max Lucado says, “We speak of a short life, but compared to eternity, who has a long one? A person’s days on earth may appear as a drop in the ocean. Yours and mine may seem, like a thimbleful. But compared to the Pacific of eternity, even the years of Methuselah(or my Big Mamma) filled no more than a glass. James was not speaking just to the young when he said, “Your life is like a mist. You can see it for a short time, but then it goes away.” (James 4:14). In God’s plan, every life is long enough and every death is timely. And though you and I might wish for a longer life, God knows better.”

It has been ten years since my Big Mamma past away, and I can now say that I have found Big Mamma’s secret to life. I finally have proof that the BC and Coke combo is not why she lived to be hundred. The truth is found in Psalm 139:16 and says, “All the days planned before me were written in your book before I was one day old.” So even before Big Mamma was born, God’s plan was for her to celebrate one hundred birthdays. And even before my dreams for Jay were created, God’s plan was for him to live to be five. Of course this doesn’t make us miss Jay any less, or by no means does it take away the pain. It only helps by giving us a glimpse of life and death through the eyes of our Savior. In some way, it comforts me to know that the timing of Jay’s death was out of my hands. There is no “Secret to Longevity” on this side of heaven. Bottom line, despite our wishes for Jay to have had a longer life, we must trust that God knew better.

I read this story recently and it really convicted me. I am sure most of you can relate.

“Blondin was a 19th century acrobat, famous for his tightrope act 160 feet above Niagra Falls on a rope which was over a thousand feet long.

In 1860 a Royal party from Britain saw Blondin cross the tightrope on stilts, and again blindfolded. After that he stopped halfway and cooked and ate an omelette. Next he wheeled a wheelbarrow from one side to the other, and returned with a sack of potatoes in it.

Then Blondin approached the Royal party. He asked the Duke of Newcastle, "Do you believe I could take a man across the tightrope in this wheelbarrow?"

"Yes, I do" , said the Duke.

"Hop in, then" , replied Blondin.

Well, the Duke declined Blondin's challenge. He might have believed Blondin could do it, but he wasn't about to trust him with his life.”

When it comes to God, this kind of belief is not much good to him. God is looking for followers who not only believe in him, but more importantly, will trust him with their lives. Trusting that He knows better.

“Trust in the Lord with all your heart and lean not on your own understanding...” (Proverbs 3:5)

Monday, April 17, 2006 8:36 PM CDT

Rooftop Worthy

I was looking back at last year’s Easter pictures of the kids and remembering how “good” life was back then. Jay had defeated cancer once again and was about to finish up 6 months of chemo treatments. He was as bald as bald could be, but he looked so happy and healthy. I vividly remember praising God that Easter Sunday for yet another miracle, and I was so looking forward to being home for the summer doing “normal” family stuff. And the year before that, Easter of 2004, the boys and I had just moved back home from Memphis. Jay was so medically fragile with his trach, feeding tube and all the horrific side effects of radiation, but what was most important to us was that he was finally cancer free. I can remember dressing him up that Easter morning and saying, “we are going to church to praise God for what he has done and to show you off, because you are Mommy and Daddy’s miracle boy!” Both years, we had reasons to shout praises from the rooftops for what our Lord and Savior had done in Jay’s life. A few weeks ago, when we were making plans to take Jay home by Easter, I told several nurses how special Easter had been to us the past two years, and that we had high hopes for yet another victorious holiday. I had envisioned taking Jay to church this past Sunday even in his medically fragile state, and showing him off while praising God for “our miracle boy”! I couldn’t wait to have another Easter to shout about from the rooftops!

Then the unthinkable happened. On Thursday, March 30th, Jay took a turn for the worst and was pronounced dead on Friday, March 31st. In the blink of an eye, my hopes were gone, my dreams were gone, and my precious baby boy was gone. No more victorious celebrations, no more showing off, and definitely no more rooftop shouting. As Easter weekend approached, I was really dreading Sunday morning. For one, I was anxious about facing our church family for the first time since Jay’s service, but more so, I was nervous about coming face to face with God. The church service that we attend is called the “Praise and Worship” service, and honestly, I haven’t been in much of a “praise and worship” mood. I know that in spite of my grief and despair, our God has blessed us and continues to bless us, and He is worthy of my praise....but, I just wasn’t feelin’ it.

Saturday morning, myself and a few of my friends provided Easter Brunch for the PICU families in memory of Jay. My friend Cory made a beautiful flyer with Jay’s picture on it to let everyone know why we were there. She asked me Friday if there was a scripture that I wanted her to use. I turned to my Bible and John 11:25 was laid before me: Jesus said, “I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die.” I immediately felt God speaking to my broken heart... “My dear child, even in the face of death, you do have something to celebrate. Remember, for those who love Me and are My children, death is but a step into eternity with Me. It is never the end but the start of forever. Take heart. I am the resurrection and the life. Where I am and where Jay is, you will be also.”

Sunday morning, I walked into church with a renewed Easter attitude. I came face to face with God and praised Him for the promise we have in the cross. The promise that as believers, we have overcome the grave and will not die, but will live with Him forever. Eternal life. That alone is worthy of a victorious celebration, to show-off to the world, and to shout from the rooftop!

When I saw him, I fell at his feet as though dead. Then he placed his right hand on me and said: "Do not be afraid. I am the First and the Last. I am the Living One; I was dead, and behold I am alive forever and ever!" Revelation 1:17

Wednesday, April 12, 2006 9:14 PM CDT

“Though I walk through the valley of the shadow of death...” Psalms 23:4

GRIEF. I have only experienced it a few times in my life with the loss of a close friend and my Grandfather, but there have been many times I have watch from afar as friends and family have grieved the loss of a loved one. One thing that I have learned from observing others, is that no one grieves the same. Grief is a normal yet personal experience. Everyone’s grief pattern is unpredictable and unique, with no specific time frame. There are no books, websites, or therapist that can tell me how I will personally grieve. There is nothing out there to prepare me, and I know that Jason, the kids, my in-laws, my parents, and myself will all grieve differently. I have also learned that there is no way to avoid it. I can’t wait it out, I can’t make it go away, I won’t get over it quickly, and no one can do it for me. I have heard grief described as a long, winding tunnel whose entrance is close behind you, and the only way out is through. So, here I am, standing just inside the tunnel, bracing myself for whatever lies ahead. The only assurance I have comes straight from the word of God.... “Come to me all of you who are weary and carry heavy burdens, and I will give you rest.” And Psalms 23 says, “Yea, though I walk through the valley of the shadow of death, I will fear no evil; For you are with me; Your rod and your staff, they comfort me.” The Bible does not promise the absence of grief, or a “quick fix” for grief- only the presence of God. “Be merciful to me, O Lord, for I am in distress, my eyes grow weak with sorrow, my soul and my body with grief.” (Psalm 31:9)

Easter week...the week we were planning on taking Jay home form the hospital. I keep having this reoccurring dream that Jay is still in the hospital somewhere. I go to his ICU room to take him home, and he is not there. I begin questioned all the staff and I am told that Jay was transferred to another part of the hospital, but no one seems to know where. I begin going from room to room looking for Jay and calling out his name. I always wake-up during my search in a state of panic...then reality hits me and I feel as if I can’t breath. My dream is just a sneak-peek into what I feel daily as I go about doing “normal” stuff. I keep feeling like I have lost something, or have forgotten to do something. It’s the same panicky feeling you get when you can’t find your child in a store or at the park. The difference being that Jay is nowhere to be found here, and that feeling of panic just lingers. Oh, how I look forward to the day when I can find him in heaven and scoop him up into my arms....what a relief that will be.

Thank you for being patient with me while waiting for an update. I have sat down many times over the past two weeks to write and just couldn’t put my feelings into words. I am planning on keeping the website going for my own therapy and to keep you included in this journey. Please continue to pray for all us. We need it more than ever before.

Friday, March 31, 2006 2:08 PM CST

UPDATED INFO:

In lieu of flowers, please make donations in memory of Jay to the following:

The Children’s Hospital Cancer Center
c/o Medcen Foundation
758 High Street Macon, GA 31201

Angel Heart Farm
9840 Sam Donald Rd.
Nolensville, TN 37135

***************************************

William Jason "Baby Jay" Gaskins went to be with Jesus at 1:59 PM today...Jason

Visitation:
Sunday April 2nd
Hart's Mortuary
765 Cherry St
Macon, GA
4:00 PM - 6:00 PM

Private Graveside service for family
Monday AM

Memorial Service - Celebration of Jay's life
Monday April 3rd
Martha Bowman Chucrch
500 Bass Road
Macon, GA
2:00 PM

Friday, March 31, 2006 6:41 AM CST

Two days ago we were preparing to go home. In a matter of hours we went from getting organized to go home to Jay turning blue. I don't know how things could have changed so quickly. We made it through the night with little excitement. A test was performed to determine Jay's brain stem activity last night. There appeared to be no activity. The test will be performed again this AM. Please pray that the results will be different this AM. Thanks to all who are holding us up in prayer.

Holding on...Jason

Thursday, March 30, 2006 6:16 PM CST

Please continue praying for our precious son. We were told tonight that Jay is not expected to make it through the night.

Holding on...Jason

Thursday, March 30, 2006 12:58 AM CST

URGENT PRAYER REQUEST:

This AM Jay's heart rate was very low and he was not draining well from his Ommaya. A CT scan was done and showed increased pressure and swelling of his brain. After returning from CT, Jay turned blue and stopped breathing. He is currently on the vent and is unresponsive. Medically, there is no hope. Our only hope is in our Heavenly Father who remains in control. Jay is His child and we have to trust Him wholeheartedly.

Please pray for Jay and for our family.

Love,
Cindy

Wednesday, March 29, 2006 7:29 PM CST

Well, when you are already considered to be “Medically Fragile”, even minor surgery can be a bit more than expected. The feeding tube placement went well, but the port placement seemed to pose a challenge due to old scar tissue from Jay’s last central line. After some extra manipulation, the surgeon was able to get it where he wanted it. Last night and today, Jay seemed to have some discomfort but the pain has been controllable with pain medication. He slept for most of the day, and we hope he will rest well tonight. Praying for a good day tomorrow!

Thank you again for all your prayers!

Love,
Cindy

Tuesday, March 28, 2006 7:18 AM CST

Sorry for the delay...the last few days have been busy, busy! Jay is doing well, and we seem to be rocking right along with preparing to go home. Today around 11am, Jay will have surgery to place a port in his chest for medicine and blood draws, and he is having a J tube placed in his abdomen. Please pray for no complications and that Jay will recovery quickly. We are also working on tweaking all his meds to make it as home-friendly as possible. Several of his meds that were IV are now going down his tube, and the times have been changed a bit to suit our schedule. One of the biggest hurdles is making sure we have all the medical and therapy equipment in place before we go home. We will also have to coordinate with a home health nurse for weekly, possible daily vital signs and blood work. Please pray that everything falls into place smoothly and that we will be home soon!

Thanks for your prayers!

Love,
Cindy

Friday, March 24, 2006 4:47 PM CST

The meeting went well today. The plan is to get the ball(more like multiple balls!) rolling to get us home. Realistically, it could take up to two weeks to have everything in place. Jason and I are so thankful to have a plan and to have everyone on the same page. It was very obvious that God had gone before us and fine tuned every detail. He even went as far as to send in one of our favorite nurses today who is also an awesome advocate for Jay. Today has been a good day.

Thank you for your prayers.

Love,
Cindy

Wednesday, March 22, 2006 8:23 PM CST

**UPDATED THURSDAY,PM**
A care conference will take place tomorrow at 2pm. We will be discussing how and when we can go home. Please pray that all goes well. Thank you.
***************************************

Jay is continuing to show improvements with his therapies. Yesterday his therapist had him doing push-ups in the bed, and today she had him rolling dough and using cookie cutters. It is always wonderful to see him attempting to do “normal” things. Now if we can just get him to interact with us more. He has periods of being awake, trying to communicate, nodding his head yes and no(mostly NO!), but most of the time he is content with sleeping. No one really has an explanation for Jay’s behavior, but everyone seems concerned. So with that said, please pray specifically that our Jay will become more awake and more interactive with us and the staff.

Monday we did another culture from Jay’s lungs, and so far, everything is negative for bacteria and fungus. We have stopped several of the antibiotics and the number of medications he is on has been cut in half! This is yet another blessing and another step in the right direction. Jay is also off the vent complete and is only requiring minimal oxygen. WhooHoo! Now, the only thing holding us back from going home is the whole drain, shunt fiasco. We are not really getting any clear answers in this department, and without going into the boring details, I just ask that you also add this to your prayer list.

Six weeks in the hospital is really taking a toll on all of us. Two and half years of battle has made us tough cookies, but even the most fierce warrior has a limit. I believe the Gaskins warriors are close to reaching that limit. We so desperately want to take our baby home so we can be together as a family again, and most importantly, Jay needs to be home. In the past, HOME has always been the medicine for Jay. Some days, I feel like Dorothy on the Wizard of Oz trying to get back to Kansas. If only it was as easy as clicking my heels together three times and repeat, “There is no place like home!” We would have been outta there a long time of go.

Thank you for your continued prayers.

Love,
Cindy

Friday, March 17, 2006 6:59 PM CST

The MRI was not good. Jay has two tumors in the right frontal lobe that he has had from the beginning. One of those tumors is stable, the other has increased by 50 percent. Also, there is a new tumor in the left frontal lobe that is almost 2 cm in size. The protocol that Jay is on calls for him to start the VP16 today. It is the chemo that God used last time to wipe out one tumor and shrink another one. We have taken a 3 week break from that chemo, but have already administered it tonight. He will take this chemo for 3 weeks and than take another 3 week break from it. Our prayer is that God would use this chemo once again in eliminating the tumors.

On a positive note, Jay is doing much better. He is trying to communicate. He got so frusrated trying to talk today that he balled up his fist and beat on the bed. He is having a hard time talking around this trach. He got a smaller trach this PM and our hope is that maybe he'll be able to talk around this one. If not, we'll go another size smaller next week - this will be about the same size trach Jay had in 2004 that he was able to talk around very easily.

Jay's ventricles are continuing to shrink. This may actually help us not get a shunt if they begin draining properly. Only time will tell if the ventricles will drain without help from a shunt. The blood in Jay's spinal fluid is continuing to thin out. He went from 3400 red blood cells to 100 red blood cells per sample (not clear how big a sample is) in one week.

Therapy is also going very well. Jay is getting an hour a day of therapy and additional therapy from us. It is amazing to see how far he has come in such a short time. One week ago Jay could not even sit up and is now sitting up unaided. He is standing with help. He is pointing and holding his arms and legs up unaided. These are small victories that we are clinging to.

While we are very frustrated with the MRI results, we are not giving up. Too many positive things have happened. It is often in the 11th hour that God performs miracles. I cannot say that living in this hour has been a lot of fun, but this is what God has willed for us at this point in time. I have noticed over the years that it seems God touches more people ,through Jay, when he is not doing as well. Maybe this is an explanation for his suffering.

Once again, THANK YOU to everyone that has helped us during this extended hospital stay. The prayers are the most important and we feel that power around us. The meals are helping me eat myself out of 36 inch waist and rapidly into a 38 inch waist. The emails, cards, letters, messages and visits mean so much to all of us. We will never be able to properly thank everyone for everything. We pray that God's blessing be on all of you for your selfless acts of kindness.

Persevering, Jason

Tuesday, March 14, 2006 8:55 PM CST

*UPDATED THURSDAY, MARCH 16TH*

MRI IS AT 12 NOON FRIDAY, MARCH 17TH. It will be late tomorrow evening before we know the results. Someone will update as soon as we know something.

Thanks for all your prayers!

***************************************
So far, Jay has had a great week! He is responding so well to all the therapy he is receiving, and I just stand amazed at how much stronger he appears everyday. This afternoon, our physical therapist had Jay standing up in the bed! As soon as all the nurses saw him through the window, they ran into our room cheering and clapping, “Go Jay!” Being the macho guy he is, Jay has never liked for people to make a fuss over him. His response to all the giddy girls was to slowly opened his lips and he mouthed, “HUSH!” It was so funny and I was thrilled to see a little glimpse of Jay’s spunky attitude that I have missed so much! What a blessing!

The plan this week is to continue to focus on Jay’s therapies, work on getting him off the vent completely by this weekend(he has been using it at night), and a MRI is scheduled for Friday. Please join us in praying for “Shock Their Socks Off”results! I will let you know the scheduled time by Thursday.

Thanks again for all your prayers!

Love,
Cindy

Sunday, March 12, 2006 9:12 PM CST

Friday was a rough day to say the least. Off and on throughout the day, Jay had what appeared to be seizure activity, and he was unable to come off the vent from the night before due to his O2 saturations dropping. He was also very agitated and his heart rate was sky high most of the day. Around 6pm, the doctor decided to give Jay a mild sedative for 24 hours so he could relax and rest. He did very well for the night and all day Saturday. We stopped the sedation last night and Jay had another wonderful, peaceful night. Today, he was able to come off the vent and he stayed on the trach collar all day without any problems. We have also not seen any seizures since Friday, and he has been very responsive. Jay continues to show improvement with his awareness, his ability to follow commands and with moving his head and arms. Today, he made his Daddy proud by picking his nose and his ear. It is just so good to see him doing normal little boy stuff! I would have never thought in a million years that I would be cheering on my child picking his nose! Now if we can just get him to burp and scratch himself, we will really be making some progress!:)

*****************************************************************************

Miracle In The Works

Jesus took the blind man by the hand and led him out of the village. Then, spitting on the man’s eyes, He laid His hands on Him and asked, “Can you see anything now?” The man looked around. “Yes,” he said, “I see people, but I can’t see them very clearly. They look like trees walking around.” Then Jesus placed His hands over the man’s eyes again. As the man stared intently, his sight was completely restored, and he could see everything clearly. (Mark 8:23-25)

As many times as I have read this story, I have somehow over looked the unique message. I say unique, because when compared to all the other stories of healing in the Bible, this one is definitely different. In the New Testament, Jesus laid hands on hundreds of people and healed them instantly. But this time, Jesus healed in stages. First he laid hands on the man, and his sight was partially restored. Then he placed His hands over the man’s eyes again, and his sight was completely restored! By healing this blind man in stages, He was likely showing us that sometimes healing is gradual rather that instantaneous.

Wow! Did I need to discover that! As we approach five weeks being in the PICU, I struggle with moments of discouragement. Focusing on just “today” becomes increasingly difficult, and the not-so-good days seems to attempt to steal my joy from the good ones. This story of healing reminds me of all the milestones we have accomplished over the past few weeks despite the setbacks. It reminds me to stay focused on what God has already done in Jay’s life, and causes me to look forward with anticipation to what is yet to come.

As I have said many times before,

Stay tuned...you are witnessing a miracle!

Love,
Cindy

Thursday, March 9, 2006 8:16 PM CST

Today we had one of our favorite nurses taking care of us who has been off for eight days. She was just amazed at the progress Jay has made and how much better he looks. It did my heart so good to hear more confirmation that our prayers are being answered, and it also gave me another opportunity to give God all the glory! One of my favorite quotes came to mind as I was thanking God for all the answered prayers:

“Wait with a heart that is patient for the goodness of God to prevail. For never do our prayers go unanswered, and His mercy and love never fail.”-Helen Steiner Rice

Well, I have good news to report from the CT scan! There is less blood in Jay’s brain and his ventricles are significantly smaller! In three days we have gone from “slight improvement” to “significant improvement”. The doctors were all standing around scratching their heads over the ventricles shrinking. They were anticipating the blood to finally dissipate as a result of the medicine that was given, but they cannot come up with a medical explanation to why the ventricles are so much smaller. Of course, it just gave me another opportunity to give God all the glory! I am still believing that one day “TOO BIG OF A MIRACLE” will be written in Jay’s file. God continues to amaze us with the impossible...because with God, “All things are possible!”

The EEG did show some seizure activity in the frontal lobe of Jay’s brain. We have added a new anti-seizure drug in conjunction with the Keppra that he has been taking since December. Please pray that this new drug works and that we can get a handle on the seizures.

Thank you for your continued prayers. I will update again sometime this weekend.

Love,
Cindy

Wednesday, March 8, 2006 9:22 PM CST

Quick update:

Jay is continuing to make progress with all his therapies. He is getting stronger by the day and becoming more aware of his surroundings. We are still very concerned about possible seizure activity and repeated an EEG today. This afternoon he was having more frequent questionable muscle spasms in his face, and we had to give him an anti-seizure/sedative medicine to stop it. We anticipate getting the results from the EEG tomorrow and will probably tweak his seizure meds. Jay will also have a CT scan in the morning to assess the blood clot. The doctors are speculating that all the blood from the clot is irritating Jay’s brain and causing focal seizures. Please pray for good results from the scan, and pray that we can control the muscle spasms.

Thank you for your prayers and I will update again tomorrow night.

Love,
Cindy

Monday, March 6, 2006 8:56 PM CST

Don’t Be Defeated

When troubles are crashing down upon you
and you are feeling very weak
My prayer for you
is His face you will seek

You’re tempted to be defeated
and to think all is lost
I pray you’ll have the joy of your salvation
as you remember what it cost

God doesn’t want you to give up
He doesn’t want you to give in
Even though things look dismal
Keep in mind that we win!

God gives you all you need:
“the mystery of Christ in You”
just drink in the Word of God
and tell yourself what is true!

Then you’ll remember how BIG God is
and how much He cares
He is good and powerful and abounding in love
and He hears your every prayer!
***********************************************************

Jay has had a wonderful day! We started the morning out with a good report from the CT scan. The blood clot has gone from one large mass to two pools of blood. This means that the clot is dissipating and then will hopefully make its way out through the drain. This will probably be a slow process, and Dr. Troup will not do a shunt until the blood is gone. Please continue to pray that in God’s time it will it be gone, and we can do the shunt soon.

In the meantime, Jay has a lot of therapy ahead of him! This afternoon, Mommy and Jay’s nurse got a wild-hair and decided to try and sit Jay up in a chair. For the first time in a month, he sat up in a chair for over an hour! It was quite a fiasco unhooking equipment, moving wires around, and getting him situated...but well worth it when all the nurses and doctors came in to see! Everyone was amazed at how well he looked and how well he was doing! Much to Jay’s dismay, the doctor immediately added more Physical Therapy and Occupational Therapy to his daily routine. He also said that if could hold his O2 saturations sitting up, then it was also time to switch his trach to an uncuffed trach. An uncuffed trach is used when the patient is breathing better on his own without ventilation, and it also means that Jay can hopefully talk around it. Jason and I cannot wait to hear his sweet little voice! So this evening, our ENT came in and put the new trach in. So far, he is adjusting well to the change. We are also leaving Jay off the vent during the day and only using it at night to give his lungs a break. He is continuing to have some shallow breathing, but for the most part, he is doing great breathing on his own!

Tonight I will go to bed with a smile on my face and praise on my lips! I am looking forward to seeing what blessings tomorrow brings...

Thank you God for hearing our prayers!

Love,
Cindy

Friday, March 3, 2006 8:05 PM CST

Just a quick update to let you know that Jay is continuing to hang in there! He has been a little more sleepy today than the past few days, but he has also been wide awake for like 48 hours straight! I guess we need to give the little guy a break and not freak out every time he falls asleep! This morning when he slept through the CT scan(at 4am!), the nurses and the resident doctor were worried to death that something might be wrong...so of course, I started getting worried. After everyone and their long-lost cousin examined him, Jay began peeking out with this look on his face like, “Can’t a brother get some sleep around here! You guys give me sedatives to sleep at night, and then freak when I do?!? Whatsup with that?!?” Anyway, we all finally chilled out and let him catch up on some much needed rest.

The CT scan was stable. Dr. Troup said that we should see improvement with the clot by Monday. We also did a chest x-ray this morning that was also stable. His lower right lung is still showing “something”, but hopefully we have enough drugs on board that it will eventually improve. Yesterday afternoon, Jay was placed back on the vent for pressure support. He is continuing to struggle with shallow breathing which cause his body to retain carbon dioxide. The plan is to give him a few days break on the vent, and try the trach collar again soon.

Thank you again for all your prayers! I will update again soon!

Love,
Cindy

Wednesday, March 1, 2006 9:07 PM CST

I am thrilled to tell you that Jay has had a great day! He has had his big brown eyes open all day, and has even responded a time or two by nodding his head and following simple commands. Jay has also officially come off the vent and is now on humidified oxygen through the trach. What a blessing today has been! Thank you God for answered prayers!

Jay has had two doses of the drug that is suppose to dissolve the blood clot. He will have a CT scan in the morning to see if we are making progress. Please pray for positive results.

Thank you again for all your prayers!

Love,
Cindy
***************************************
PRAYER VIGIL FOR JAY:

Please commit to a time each day this week(Monday-Friday) to pray for our Baby Jay. Here is a list of specific prayer request:

Please pray that we can successfully wean Jay from the vent without any complications.
Pray that the withdraws from the sedation drugs will subside quickly.
Pray for no seizures.
Pray that we are able to identify the bacteria that is in Jay’s lung and treat it appropriately.
Pray that the trach heals without infection.
Pray for Jay’s possible shunt surgery in the near future.
Pray that Jay will continue to open his eyes and respond to us.
Pray that he will regain his physical and mental strength.
Pray that his blood counts stay up to protect him from future infections.
Pray that God continues to guide our medical team here in Macon, GA.
Pray that God will continue to use the chemo to kill the tumors.
Pray for Jay’s complete earthly healing...from the top of his little bald head to the tip of his cute little toes.
Pray that we can bring our baby home soon....

Thank you for your commitment to pray for our son. Jason and I are grateful for all of you, and look forward to seeing God’s mighty hand at work this week.

“If we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.” -1 John 5:15

Tuesday, February 28, 2006 8:30 PM CST

Sunday night, Jay’s new catheter in his head stopped draining. Monday morning, a CT scan was order to check on the placement of the EVD(the catheter). As soon as we returned from the scan, Jay began to show signs of increased pressure in his brain by lots of drooling, posturing(stiff movements with his arms), and his pupils were enlarged and uneven. Dr. Troup was called in to replace the EVD and to review the scan. The scan showed that there is blood in Jay’s ventricles and a very large blood clot has formed where the catheter was placed. Dr. Troup attempted to reroute the EVD, but the clot continued to plug up the catheter, so the drain has been placed back into the Ommaya. Once Jay began draining again, he became more responsive by opening his eyes and moving his hands and legs. Everyone was so relieved after such a scary day. Starting tomorrow, Jay will receive a drug through his Ommaya that is suppose to dissolve the blood clot. After three days, we will repeat the CT scan to reassess and continue the treatment if need be. Please pray that this drug works quickly and gets rid of the clot completely. We cannot even discuss the shunt surgery until this is resoled. Also, moving the EVD back into the Ommaya places Jay at a higher risk for infection. Please join us in praying that Jay will remain infection free during this waiting period. It could possibly take weeks before Dr. Troup is comfortable with doing the shunt.

Yesterday, even through my tears and fears, I found comfort in knowing that at any given moment, someone was praying for Jay and for our family. All I could think was, “man, what a perfect time for a prayer vigil.” Thank you, from the bottom of my heart.

Keep praying....

***************************************
PRAYER VIGIL FOR JAY:

Please commit to a time each day this week(Monday-Friday) to pray for our Baby Jay. Here is a list of specific prayer request:

Please pray that we can successfully wean Jay from the vent without any complications.
Pray that the withdraws from the sedation drugs will subside quickly.
Pray for no seizures.
Pray that we are able to identify the bacteria that is in Jay’s lung and treat it appropriately.
Pray that the trach heals without infection.
Pray for Jay’s possible shunt surgery in the near future.
Pray that Jay will continue to open his eyes and respond to us.
Pray that he will regain his physical and mental strength.
Pray that his blood counts stay up to protect him from future infections.
Pray that God continues to guide our medical team here in Macon, GA.
Pray that God will continue to use the chemo to kill the tumors.
Pray for Jay’s complete earthly healing...from the top of his little bald head to the tip of his cute little toes.
Pray that we can bring our baby home soon....

Thank you for your commitment to pray for our son. Jason and I are grateful for all of you, and look forward to seeing God’s mighty hand at work this week.

“If we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.” -1 John 5:15

Sunday, February 26, 2006 8:30 PM CST

PRAYER VIGIL FOR JAY:

Please commit to a time each day this week(Monday-Friday) to pray for our Baby Jay. Here is a list of specific prayer request:

Please pray that we can successfully wean Jay from the vent without any complications.
Pray that the withdraws from the sedation drugs will subside quickly.
Pray for no seizures.
Pray that we are able to identify the bacteria that is in Jay’s lung and treat it appropriately.
Pray that the trach heals without infection.
Pray for Jay’s possible shunt surgery in the near future.
Pray that Jay will continue to open his eyes and respond to us.
Pray that he will regain his physical and mental strength.
Pray that his blood counts stay up to protect him from future infections.
Pray that God continues to guide our medical team here in Macon, GA.
Pray that God will continue to use the chemo to kill the tumors.
Pray for Jay’s complete earthly healing...from the top of his little bald head to the tip of his cute little toes.
Pray that we can bring our baby home soon....

Thank you for your commitment to pray for our son. Jason and I are grateful for all of you, and look forward to seeing God’s mighty hand at work this week.

“If we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.” -1 John 5:15

*****************************************************************************

Yesterday, we discovered that Jay has a new bacteria growing in his right lung. We did another Bronc today for cultures and have started several more antibiotics. Hopefully in the next few days, we will be able to identify the bug and make sure we are treating it appropriately. Also, since we started weaning the vent, Jay has developed tremors. The doctors believe that he is experiencing withdraws from the sedation drugs that he was on, but we have scheduled an EEG tomorrow to rule out seizure activity. We have also increased his seizure medication just as a precaution. Please pray for no seizures, and that the tremors subside quickly.

The vent is now turned down to the lowest settings, and we will attempt to take Jay off tomorrow. Please pray for a smooth, uneventful transition.

Thank you again for all your prayers.

Love,
Cindy

Saturday, February 25, 2006 9:33 AM CST

****INFO ON PRAYER VIGIL FOR JAY IS POSTED AT THE BOTTOM OF THE PAGE****

Weaning the vent is very touch and go. Jay seems to be handling it okay, but has continued to need a little extra support when he initiates a breath. His body is learning how to breath on it’s own again, and now with a trach, breathing probably feels a bit different. We have continued to cut back his sedation drugs and are now just waiting for him to open those big brown eyes. He has been doing a lot fluttering, put no peeking yet! Once he is awake and somewhat alert, he should be able to come totally off the vent. Please continue to pray for a smooth transition.

Also, Dr. Troup was able to placed the new catheter into Jay’s ventricle. This new way of draining spinal fluid should give us a more accurate read on the pressures in Jay’s brain.
Dr. Troup did comment that the pressure appeared to be very low, which is a good sign. As soon as the trach site heals, we will again discuss the shunt.

Yesterday, Dr. Al started back chemo. We are starting at a slightly lower dose to hopefully keep his white count at a safe level. Please pray that we can keep Jay healthy this time around, and at the same time, effectively continue to kill off the tumors.

My verse for the day comes from Psalm 60:12: “With God we will gain the victory!”

I will update again tomorrow night. Thanks for your prayers!

Love,
Cindy

***************************************
Jay's church is holding a Prayer Vigil. Just wanted to invite all those who read the website to join us as we commit a weeklong prayer of healing for Jay. Monday, February 27th thru Friday March 3rd. We are asking that you commit 15 minutes of prayer for Jay for 5 days. You can pray anywhere, at home, in the car, at work, or wherever.

James 5:7 “And the prayer offered in faith will make the sick person well; the Lord will raise him up”.

Isaiah 19:22 “…They will turn to the Lord, and he will respond to their pleas and heal them”.

Psalm 91:4 “He will cover you with His feathers and under His wings shall you trust and find refuge… Because he loves me, says the Lord, I will rescue him…with long life will I satisfy him and show him My salvation.”

Isaiah 40:29 “He gives strength to those who are tired and more power to those who are weak.”

Pray that Jay and Cindy and Jason will hear “Go…your faith has healed you”. Mark 10:52

Thursday, February 23, 2006 7:06 PM CST

Surgery went fairly well. The Trach was placed without complications, but Jay’s O2 saturations were not stable enough to continue with the biopsy or the ventricular catheter. After returning to his room, Jay did stabilize and we will attempt the catheter tomorrow at bedside. The biopsy will be rescheduled when we do the shunt. Jay already looks better, and we have started to wean the sedation drugs and the vent. He could be off the vent as early as tomorrow, but of course that will be up to Jay. Please pray that we can wean the vent quickly without complications.

Thank you for all your prayers!

Love,
Cindy

Thursday, February 23, 2006 8:43 AM CST

The meeting yesterday went well. Everyone seems to be on the same page in regards to Jay’s treatment and our short term goals. Today around 1:00pm, Jay will be taken to the OR to have a Tracheotomy. He will remain on the vent for a few days, and then hopefully we can begin to wean him off. Also, another catheter will be placed into one of Jay’s ventricles so we can take the one out of the Ommaya. Having the Ommaya accessed for long periods of time is not a good thing due to possible infection. The new catheter is a better option for now, and a shunt will most likely be place once the trach has had time to heal(7-10 days). Dr. Al is ready to restart chemo in the next few days, and we have a new plan in place to hopefully avoid future setbacks with low white blood cell counts. All of the study drugs will now be given at a slightly lower dose and we will monitor his counts very closely.

Has you can see, we have a long road ahead of us. Please pray for all of us, Jay’s medical team, and especially for our sweet Jay. I will update again tonight.

Love,
Cindy

Tuesday, February 21, 2006 7:58 PM CST

Tomorrow morning at 9am we are having a Care Conference with all of Jay’s medical team to prioritize our goals for Jay. Please pray that God will direct all of us in what is best for Jay, and that everyone is on the same page. We are confident that God has gone before us "and we know that all things work together for good for those who love the Lord, who are called according to His purpose."

Thank you for your prayers...

Monday, February 20, 2006 8:02 PM CST

After a whirlwind AM, things calmed down this PM. Jay has handled the tube a lot better than his parents. The ENT who removed Jay's first trach is tentatively planning on putting the trach in Thursday. Please pray that all goes smoothly. The pnuemonia appears to no longer be a factor - his lungs are clear. Jay's white blood count and platelets are also in good shape. Right now Cindy and I must focus on the trach only. There are numerous decisions that have to be made in the coming days that are too overwhelming to try to tackle in one day. We have to pray with our eyes on God, not on the difficulties.

Thanks to all for your gracious calls, emails, meals, prayers and other acts of love. We truly appreciate eveything that has been done on our behalf.

Someone emailed us this poem this evening and I thought it was very appropriate to share it here:

WAIT
By Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.

I pled and I wept for a clue to my fate....
and the Master so gently said, "Wait."

"Wait? you say wait?"
my indignant reply.
"Lord, I need answers,
I need to know why!"
"Is Your hand shortened?
Or have you not heard?
By faith I have asked, and
I'm claiming your Word.

My future and all to which I relate
hangs in the balance,
and you tell me to Wait?"

"I'm needing a 'yes,'
a go-ahead sign.
Or even a 'no',
to which I'll resign.

You promised, dear Lord,
that if we believe,
we need but to ask,
and we shall receive.

Lord, I've been asking,
and this is my cry:
I'm weary of asking!
I NEED A REPLY."

Then quietly, softly, I learned of my fate,
as my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
and grumbled to God,
"So, I'm waiting...for what?"

He seemed then to kneel, and His eyes
met with mine... and He tenderly said
"I could give you a sign.
I could shake the heavens
and darken the sun. I could raise the dead
and cause mountains to run.

I could give all you seek
and
pleased you would be.
You'd have what you want,
but
you wouldn't know Me.

You'd not know
the depth of My love
for each saint.

You'd not know
the power that I give
to the faint.

You'd not learn to see
through clouds of despair;
you'd not learn to trust
just by knowing I'm there.

You'd not know the joy
of resting in Me
when darkness and silence
are all you can see.

You'd never experience
the fullness of love
when the peace of My spirit
descends like a dove.

You would know that I give,
and I save, for a start,
But you'd not know the depth
of the beat of My heart.

The glow of My comfort
late into the night,
the faith that I give
when you walk without sight,

The depth that's beyond
getting just what you ask
from an infinite God who
makes what you have last.

You'd never know should
your pain quickly flee,
what it means that My grace
is sufficient for thee.

Yes, your dearest dreams
overnight would come true,
but, oh, the loss, if you missed
what I'm doing in you.

So, be silent, my child,
and in time you will see
that the greatest of gifts
is to
truely
know
me.

And though oft My answers
seem terribly late,
My most precious answer of all is still...
"WAIT."

Waiting wearily, Jason

Monday, February 20, 2006 11:56 AM CST

Today has started out on a bad note. Jay had to be put on a vent this AM. His airway continues to be obstructed by his vocal cords. Two years ago this month Jay had a trach put in and it looks like we are headed down that same path. After that is dealt with Jay is still facing a shunt, G-tube, potential bone marrow transplant and in between all of this chemo. We are at about as desperate a situation as ever with Jay right now. Please stand in the gap for Cindy and me. We are worn out physically, mentally and spiritually. We are still trusting God.

Trusting Him, Jason

Sunday, February 19, 2006 8:09 PM CST

Yesterday was a good day for Jay. He was able to stay off the BiPAP all day with only Oxygen being administered through his nose. They placed him back on the BiBAP machine for the night and attempted to take him off this morning. After a few hours off, Jay began to struggle with labored breathing and his O2 stats dropped. He was placed back on the BiPAP, and it literally took him all day to recover. No one knows exactly what caused this episode, but there is a possibility that we were weaning him to quickly from the BiPAP. Once Jay is stable again, we will wean at a slower rate and just pray that he tolerates it. This evening he appears to be better and hopefully he will rest peaceful tonight.

Jay is also experiencing some type of allergic reaction to one of his medicines. He has broken out all over his little body with water blisters. The doctors are watching him closely, and we have started using a topical antihistamine to see if we can at least control it. One of the antibiotics is probably the culprit, but we do not want to stop something that also appears to be helping the pneumonia. So far, the doctors do not think that the reaction is life threatening.

Also, please pray that we can get Jay’s blood sugars under control. We are still battling to keep them at a normal level, and frankly, I don’t know how much longer I can stand to see my baby being stuck every few hours. His arms, legs, finger tips and toes having been brutalized by constant pricks and sticks. As if he doesn’t have enough to deal with. Please, please pray that we can get a handle on it. Actually, pray boldly that God will return his blood sugars back to normal and we can stop sticking him. He deserves a break.

The good news is that Jay’s white count is up and he is no longer Neutropenic(goal one!). His left lung is continuing to improve and but his right is about the same. Hopefully, his body can now assist in fighting off the pneumonia and we will soon see improvement in the right lung(goal two!). Dr. Al is looking at starting back the chemo on Wednesday. We are also going to revisit the shunt surgery again this week. Continue to pray for wisdom and guidance for our medical team. Pray that they will always give one hundred percent in everything they do for Jay, no matter what.

I would also like to ask you to pray for me and for Kaitlyn. We have both come down with nasty colds, and I don’t have time to be sick.

Thanks for all your prayers!

love,
Cindy

"His compassion fail not. They are new every morning; great is Your faithfulness." (Lamentations 3:22-23)

Saturday, February 18, 2006 8:36 AM CST

****From Friday, Feb 17th****

Jay had a rocky start to his afternoon due to having a new feeding tube placed. The NG tube that was placed last weekend, was going through his nose and down into his stomach. Last night and this morning, he had way to much residual in his stomach which means he was not digesting very well. We had to switch the NG to a NJ tube which is placed through the nose and down passed the stomach into the intestines. This is the preferred placement for long-term feed, so hopefully we will not have to mess with the tube again until it is time to pull it. So, long story short, the whole fiasco was very disruptive for Jay and it took him hours to recover. His O2 sats were all over the board and we had to go back up a notch on the BiPAP. By this evening, he had chilled-out and was resting peacefully when I left. The night shift Respiratory Therapist is going to work on getting him back down to where he was this morning. One step forward, two steps back, one step forward....the story of our lives.

On a positive note, Jay’s white count appears to be on the upswing and his lungs are looking a little better. Right now, goal number one is to get Jay’s counts up so we can focus on goal number two: clearing up his lungs. Goal numbers 3 thru 10 will have to wait. It is overwhelming to even think that far ahead.
***************************************
“So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.” Heb 10:35-36

In the book “He Speaks to Me”, Priscilla Shirer talks about how during difficult times in her life, she has tried to figure out what she must do to put herself in a position to hear from God. Again and again, she has had to confront the reality that, while you can put yourself in a position to hear from God, you cannot make Him speak. God’s timing is perfect. Of all the things God asks us to do, doing nothing as we wait for Him is the hardest.

The prophet Habakkuk lived in a day when Israel’s enemies were both evil and overwhelming. He could not understand how God could allow the enemies to take over His people. Habakkuk cried out for help and anxiously waited for God’s response. “How long, O Lord must I call for help? But you do not listen!”(Habakkuk 1:2) Habakkuk was so anxious to hear from God that he compared his stance to that of a soldier stationed on a watchtower. “I will climb up to my watchtower and stand at my guardpost. There I will wait to see what the Lord says and how he will answer my compliant.” (Hab 2:1)

Over the past week, I have strived to be more like Habakkuk. His stance was militant, his determination strong, and his resolve sure. Above all else he was determined to wait for God’s response. I want to be like Habakkuk as I sit in my watchtower(Jay’s ICU room) and wait to hear from God. But, sometimes I struggle with becoming frustrated and impatient. I have caught myself trying to give my input and rush things along, but then I remind myself that often the wait in seeing God’s plans for us demands that we exhibit patience. In Habakkuk 2:3 God warns the prophet, “you must be patient. What I am about to tell you is a vision that has an appointed time to come to fulfillment. Don’t try to rush it, just relax in knowing that it will not fail!” An appointed time set apart by God for His own glory... and He will not fail! I can hear God whispering in my ear, “Cindy, just sit back, relax and watch what I’m gonna do! My plans are bigger than you could ever imagine!” Wow, what powerful, comforting words! In Psalm 27: 13-14 David shares the action he took to keep himself from losing heart as he waited on God to come through for him. He was strong, courageous and most importantly, he believed. “I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.”

Believing and Graciously Waiting,

Cindy

Friday, February 17, 2006 9:04 PM CST

Jay had a rocky start to his afternoon due to having a new feeding tube placed. The NG tube that was placed last weekend, was going through his nose and down into his stomach. Last night and this morning, he had way to much residual in his stomach which means he was not digesting very well. We had to switch the NG to a NJ tube which is placed through the nose and down passed the stomach into the intestines. This is the preferred placement for long-term feed, so hopefully we will not have to mess with the tube again until it is time to pull it. So, long story short, the whole fiasco was very disruptive for Jay and it took him hours to recover. His O2 sats were all over the board and we had to go back up a notch on the BiPAP. By this evening, he had chilled-out and was resting peacefully when I left. The night shift Respiratory Therapist is going to work on getting him back down to where he was this morning. One step forward, two steps back, one step forward....the story of our lives.

On a positive note, Jay’s white count appears to be on the upswing and his lungs are looking a little better. Right now, goal number one is to get Jay’s counts up so we can focus on goal number two: clearing up his lungs. Goal numbers 3 thru 10 will have to wait. It is overwhelming to even think that far ahead.

I have more to share, but it will have to wait until tomorrow. I must get some sleep. Thanks for checking in.

Keep praying!

Love,
Cindy

Friday, February 17, 2006 9:11 AM CST

Yesterday was a better day for Jay. He is doing well on the BiPAP and we have started to lower the settings today. Please pray that we can wean him off quickly. I need to head back to the hospital so I will update again tonight. Thanks for your prayers.

love,
Cindy

*We do not have access to a computer at the hospital and the rooms are not wired for laptops. We can only update from home when one of us is here. Most of the time we can only update every other day. Thanks for your patience.

Wednesday, February 15, 2006 9:07 PM CST

Last night and throughout today, Jay has continued to struggle. Due to his breathing being so labored and his O2 saturations continuing to decline, we eventually maxed out the oxygen and had to resort to the BiPAP machine. Within an hour, Jay was breathing much better and his saturations returned to normal. Of course he is hating the mask, but at the same time he is being his compliant self. Every now and then, he will let everyone know how he truly feels about the BiPAP mask by pulling at it and shaking his head no, but so far we have been able to calm him down. Please pray that he will continue to be excepting of it and that it will do the trick so we can avoid the ventilator. We really need this to work.

As if that wasn’t enough, this morning we found out that Jay is officially Neutropenic(low white blood cells), both lungs are looking a little suspicious on his chest x-ray(probably pneumonia), and his blood sugars are way too high(probably from the steroids). We have started back antibiotics, doubled the G-shot, have moved to a more isolated room in the PICU, cut back on the steroids, and now Jay is on insulin.
So, needless to say, today has been hard and very frustrating.

This Max Lucado devotion hit a home run for me tonight after such a draining day....

“He gives strength to those who are tired and more power to those who are weak.” (Isaiah 40:29)

An example of faith was found on the wall of a concentration camp. On it a prisoner had carved the words:

I believe in the sun, even though it doesn’t shine,
I believe in love, even when it isn’t shown,
I believe in God, even when he doesn’t speak.

I try to imagine the person who etched those words. I try to envision his skeletal hand gripping the broken glass or stone that cut into the wall. I try to imagine his eyes squinting through the darkness as he carved each letter. What hand could have cut such a conviction? What eyes could have seen good in such horror?

There is only one answer: Eyes that chose to see the unseen. -Max Lucado

Against all hope, in hope I still believe...

Cindy

Wednesday, February 15, 2006 3:52 PM CST

URGENT PRAYER REQUEST:

Jay is continuing to struggle with his breathing and is now on a BiPAP machine which is a step down from being intubated. Please pray that we can control his airway with the BiPAP and avoid intubating him. I will update later.

Wednesday, February 15, 2006 10:06 AM CST

Just a quick note to let everyone know that Jay is hanging in there. I am planning on doing a more detailed update this evening.

Thanks for your continued prayers...

Love,
Cindy

Monday, February 13, 2006 9:38 PM CST

Surgery was canceled today for several reasons. The first red-flag was a few hours before surgery, Jay had an “episode” where he was having trouble breathing. He was gasping for air and his O2 stats began dropping. We had suctioned him right before and believe that it maybe triggered an upper-airway spasm. He is now requiring oxygen to keep his stats stable. His blood work is also giving us cause for concern due to his white blood cell count dropping and his bands(sign of possible infection) rising. We did cultures today, are closing watching for fever, stopped the chemo, and will start the G-shots back tonight. Having a weakened airway, a significant drop in his white count, and possible infection brewing is not what you want to see right before surgery. That would be the perfect setup for some ugly post-surgery complications. Postponing surgery has also made the doctors step back and question the immediate need for a shunt. The drain we have in place keeps the pressure in Jay’s brain at a normal level, a CT scan today showed that there are no obstructions in the ventricle system, and all though the ventricles are HUGE, they appear to be working properly. Something else the CT scan showed is that the edema(swelling of the brain) appears to have worsened. What could be causing it, no one really knows for sure. It could be from the chemo drugs, the steroids, or even from the dying tumors. So, the doctors are now wondering if maybe the edema is causing Jay’s lethargic behavior and not so much the hydrocephalus. We are cutting back the steroids and have added heavy doses of saline(sodium) to see if that will help to shrink the swelling. It has really become a “wait and see” game and just pray that something works. The shunt is still on the radar screen, but has taken the backseat at this time.

Please continue to pray for wisdom and guidance for us and for our medical team, and as always, please pray for our sweet Jay.

Love,
Cindy

Saturday, February 11, 2006 9:10 AM CST

****UPDATED MONDAY, FEBRUARY 13****

SURGERY IS SCHEDULED FOR 11:40AM. Please pray for no complications.
***************************************

****FINALLY, NEW PHOTOS IN THE ALBUM! THANKS CORY!****

Dr. Al walked into Jay’s room yesterday morning, grinning from ear to ear. I said to him,” Too big of a miracle?” And he said, “It is amazing! Too big of a miracle!”

And all of God’s people said, AMEN!

The logic behind the tumors shrinking being a BIG miracle, is that Jay was only on treatment for ten days, off for fourteen, and then back on for seven. This regiment typically take time to see shrinkage, and the couple of cases that I know of, only reported minimal shrinkage even after months of treatment. In Dr. Troup’s(the neurosurgeon) words, there is a substantial difference in the size tumors and the membranes surrounding them”. Not minimal, but substantial! Not science, but God! He gets all the glory!

After the MRI on Thursday, Jay was admitted to ICU so he can be closely monitored. Hydrocephalus(fluid on the brain) can be very serious and we aren’t taking any chances. Yesterday, we accessed Jay’s Ommaya and placed a drain that will slowly drain off fluid as the pressure in the brain gets too high. This keep us from having to tap as often as we were, and will cut down the chance for infection. A feeding tube(NG tube) was also placed due to Jay not eating and because he is having a difficult time taking his medicines. We can now give him nutrition and all his PO(by mouth) meds through the tube. Jay also required a blood and IVIG(Imunoglobulin) transfusion last night. The combination of the drain, the feeding tube, and the transfusions, as already made a huge difference in Jay. This morning, his color is better, his eyes are open, and he is talking more. I believe we are on the right track, and thank God for getting us here.

Tentatively, the shunt will be place Monday, but we are still waiting for an OR time. We are also going to do a small biopsy to rule out any suspicions we may have, and I will go into more detail at a later time. Just pray that we get only “cut and dry” answers so we can move on accordingly. All I can say is that this little tidbit of info, could cause our “too big of a miracle” to become TOO HUGE! Just pray!

Thank you for prayers, and thank you for rejoicing with us as we continue to see our miracle unfold!

Stay tuned....you are witnessing MIRACLE!

Love,
Cindy

“I will praise you Lord, for you have rescued me. You refused to let my enemies triumph over me. O Lord my God, I cried out to you for help, and you restored my health. You brought me up from the grave, O Lord. You kept me from falling into the pit of death. Sing praises to the Lord, all you godly ones! Praise his holy name! His anger lasts for a moment, but his favor lasts a lifetime! Weeping may go on all night, but joy comes with the morning. (Psalm 30:1-5)

Thursday, February 9, 2006 10:02 AM CST

JAY'S TUMORS ARE SHRINKING! I like saying that over and over because I like the sound of it. Jay's largest tumor has shrunk from 34mm to 18mm - almost half it's size since January 4th. The membrane around his brain has thinned to almost normal size (it had thickened as the cancer progressed). The only negative news was that his fourth ventricle is three times the size it is suppose to be. Hopefully, with continued tumor shrinkage, possibly aided by a shunt, the fluid build-up will subside. We will find out in the AM if he gets a shunt. Putting in a shunt is a relatively minor surgery now that takes about 30 minutes.

Thank you all for continuing to pray and lift up Jay before His throne. Is this too big a miracle? Not for our God.

Holding on for a BIG Miracle, Jason

***************************************

Too Big of a Miracle?

“Mrs. Gaskins, we just want to make sure that you and your family don’t have false hope. If indeed we have stabilized the tumors with the new treatment, it is inevitable that the cancer will eventually win.”

So, what if the tumors begin to shrink, or better yet disappear? “Well, that would be too big of a miracle.”

I laughed. Not just a snicker, but a full-fledged-bent-over belly laugh. I am sure that the doctors are now conspiring to have me shipped off to the funny farm, and even you may be wondering about my sanity. What Mamma laughs at such a bleak prognosis for her child? Well, let me tell you, this Mamma has placed her trust in a much higher Authority. My trust is in the one true God who created the heavens and the earth and the majesty of the stars, mountains, and valleys. My trust clings to the Word of God and rest in His promises. 2 Corinthians 3:4-5 says, “We are confident of this because of our great trust in God through Christ. It is not that we think we can do anything of lasting value by ourselves. Our only power and success come from God..” From the beginning of this journey, I have always said, “With all do respect, please don’t spout off your percentages and opinions to me, because we refuse to be a statistic or to concede to any opinion.” And through God, Jay has proven those opinions and statistics wrong many times. So, why should this time be any different? Joel Osteen says, “I serve a supernatural God who is not limited to the laws of nature. He can do what human beings cannot do. He can make a way in our lives where there is no way.”
I use to say that one day, “spontaneous remission” would be written in Jay’s file. I have changed my mind, and believe that “TOO BIG OF A MIRACLE” will be more appropriate.

Luke 1: 37 says, “For nothing is impossible for God.”

“And so, Lord, where do I put my hope? My only hope is in You.” (Psalm 39:7)

******************************************************************************

Jay is hanging in there. Tapping the Ommaya continues to give him some relief, but even after tapping, he is sleeping more, eating less, and he is very weak. We will see doctor Al tomorrow and will probably tap to get us through the weekend. We are also working on scheduling a MRI for either Thursday or Friday of next week. Hopefully, we will get a time at our appointment tomorrow. On a positive note, Jay’s spinal fluid continues to be clear of cancer cells, and he is not complaining of any pain. Even with his eyes closed, he is smiling, giggling and responding to us. Jay is not suffering in any way.
Being a “seasoned oncology parent”, I have been told, I have seen and I have read all about death. I know that the weakness, the sleeping, the not eating, and the increase cranial pressure is not a good thing. I know what it appears to be, but I just refuse to give up, and refuse to be defeated. My God is a miracle-working God. One of my favorite quotes that I have shared many times is this:

“For children of God, a perfect setup for catastrophic defeat is also the perfect setup for a miraculous victory. Difficulty is actually the atmosphere surrounding a miracle in it’s initial stage. Yet if it is to be a GREAT MIRACLE, the surrounding condition will be not simply a difficulty but an utter impossibility.”

Staring the utter impossible dead in the face and continuing to hang on to our “Too Big of a Miracle”.

Keep praying!

Love,
Cindy

Wednesday, February 8, 2006 8:09 PM CST

We are home and very tired. Jay is doing okay, and I will update sometime tomorrow.

Keep praying!

Cindy

Tuesday, February 7, 2006 8:39 PM CST

So, going back to Sunday....

Jay woke up with a headache that continued throughout the day. He was also very lethargic, his heart rate and body temp. were low, he would not eat or drink, and ended up vomiting due to obvious pressure. We called Dr. Al with our concerns, and he immediately met us at the hospital to tap Jay’s Ommaya and we did a CT scan. Within minutes of tapping, Jay perked up, asked for something to eat, and we went home. Yesterday was a better day, but after about 4pm, Jay started sleeping again, not eating, and was somewhat non-responsive. This morning he was the same, so I took him to Dr. Al’s to tap his Ommaya once again. Just like Sunday, within minutes, he was a different child, and was asking for food, talking to his Nanna on the phone, and cracking jokes. Thank God for that Ommaya.

Also, due to Jay not eating and drinking well we decided to admitted Jay to the Hospital for the night to start TPN (IV nutritional supplement). We will continue the TPN at home as long as Jay is not eating well. Hopefully, it will also help him to feel a little better. We have also revisited the shunt option. Now that Jay’s spinal fluid is clear and remains to be clear, and the tumors appear to be stable, would a shunt be helpful? We met with the Neurosurgeon this evening, and he is now willing to shunt Jay if that is what we want to do. First, Jason and I would like to see if tapping the Ommaya more frequently would help, but if it does not, we would entertain the idea. We are also going to do an MRI in about two weeks, and would like to hold off until then before we make that decision. Please pray that God will go before us and guide us in making the best choice for Jay.

Well, I am off to bed and will update again as soon as I can.

Keep praying!

Love,
Cindy

Tuesday, February 7, 2006 8:44 AM CST

I do not have time to fully explain, but just wanted you to know that Jay is not doing very well. He has been sleeping a lot since Sunday and is not very responsive. We did a CT scan Sunday night and the learned that the tumors are stable, the brain swelling is down a bit, but the ventricle has worsened. I believe we are seeing side effects from the fluid build up. We are on the way to Dr. Al's now, and need all of our prayer warriors to pray for wisdom and guidance for us and the doctors, and to pray for our sweet Jay.

Bottom line, we need a miracle.

I will update as soon as I can.

Cindy

Saturday, February 4, 2006 7:49 PM CST

Our visit to Dr. Al’s went fairly well....just very long. Jay’s counts continue to look good, his chest x-ray as improved, and we have started back all of his treatment drugs. Also, the final pathology report on the spinal fluid is NEGATIVE! The only thing reported was a lot of “debris” which Dr. Al believes to be dead cancer cells. So, what does that mean? It means that the tumors have stopped “throwing off” cells, and it lessens the chances for new tumor growth. It could also be an indication of stable, shrinking, or even miraculously vanishing tumors...which is what we are praying for! Of course there is no guarantee, so we are planning on doing an MRI in a few weeks.

Clinically, Jay is having a tough time with all the steroids we are pumping into his little body. The steroids have caused a lot of weight gain, muscle weakness, joint pain, and personality changes. Since our admission to the hospital, Jay has completely stopped walking, has trouble sitting up, and is extremely weak all over. Even holding a sippy cup has become a difficult task. A friend of ours who is a Physical Therapist is going to start working with Jay next week here at our home. Hopefully, with some work, he will regain the strength he has lost. Once we get him up and moving around on his own, this will be the fourth time since diagnosis that he has had to relearn how to walk. My Baby Jay is such a trooper, and he never ceases to amaze me...
As far as the personality changes, my sweet little Jay has turned into a grumpy, irritable, demanding, never-satisfied-male-chauvinist! He lays on the couch all day shouting demands for food, toys, movies, diaper changes, and of course, more food...which by the way he is never satisfied with. I have been called a meanie, a jerk, and geek more times than I can count, but every now and then, my sweet Jay appears and wants me to hold him and kiss him. I am beginning to feel like I am living out one of those cheesy Lifetime movies where the submissive woman is living with a verbally abusive man who instead of being a raging alcoholic, is a steroid addict! Have I mentioned lately how much I LOATH steroids?!? Dr. Al wants to attempt to decrease Jay’s dose slowly over the next several weeks. The side effects from coming off steroids can be just as brutal as being on them. Please, please pray that we can at least wean him down to a dose where he can function. He is so miserable, and Jason and I hate seeing him like this.

***********************************************************

Searching for the Gold

For two and half years, we have been frantically searching for the seemingly unattainable....a CURE for our child. We exhausted all traditional cancer treatments within the first year, and for the past 15 months, “on a wish and a prayer”, we have jump from one Phase 1 study to another. Now, with Jay’s prognosis appearing to be as hopeless as ever, we continue to search, continue to fight, and continue to pray without ceasing for a cure. One night last week, while we were in the hospital, I was telling a Respiratory Therapist Jay’s story. She listened intently, only nodding her head as I retold our journey and explained that we just refuse to give up on our miracle. As she was leaving Jay’s room, she turned around and said, “You know, you are doing the right thing. You can never give up, because you never know when “the gold” is just around the corner.”

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still. (Exodus 14:13a,14)

Be strong and bold; have no fear or dread of them, because it is the Lord your God who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:6,8)

Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! (Psalm 27:14)

But he knows the way that I take. When he has tried me, I shall come forth like gold.(Job 23:10)

Going for the Gold,
Cindy

Monday, January 30, 2006 8:26 PM CST

***UPDATED WED. Feb, 1st***
All is well...Jay has an appointment tomorrow afternoon with Dr. Al. We will check his blood counts, may do a chest x-ray, and hopefully add back another treatment drug. Today, I spoke with Dr. Al's nurse about the pathology report regarding the spinal fluid...two days later, the count remains at ZERO!!! Thanks be to God! I will update again tomorrow night! Thanks for checking in!***

Just a quick update to let you know that we are HOME! They were able to place a PICC line in Jay’s arm so we can administer the antibiotic and the anti-fungal at home. His blood counts are the best they have ever been, and we were able to start back chemo today. We are going to start slow, adding one drug at a time. Hopefully within a week or so, Jay will be back on all four drugs.

Yesterday, Dr. Al shared with us some very positive news and answer to many, many prayers. The day we started this new protocol, we tapped Jay’s Ommaya due to the pressure issues. The spinal fluid that was collected was sent to pathology. Ten days later, when we were admitted to the hospital, we tapped his Ommaya again and sent that sample of fluid to pathology. Before treatment, pathology reported 26 cancer cells per cubic millimeter. After ten days of treatment, pathology reported 2 cancer cells per cubic millimeter. YES, I said TWO! Just more evidence that the chemo(and prayer) was working! So, just out of curiosity, and of course to see where we stand since Jay has been off treatment for two weeks, we tapped the Ommaya again for testing. Yesterday I said to Dr. Al, “Well you never know, the cell count may come back zero.” He quickly pointed towards heaven and said, “Well, that would definitely be from God!” A few hours after today’s tap, Dr. Al came in with a big grin on his face and said, “So far, pathology is reporting the cell count is at 0.” Yes, I said ZERO! The final report will take two days, but so far, they don’t see any cancer cells! PRAISE BE TO GOD! We had been so worried about being off treatment for two weeks, but even through our “mustard seed” size faith, God was answering our prayers.

“I assure you, even if you had faith as small as a mustard seed you could say to this mountain, “Move from here to there,” and it would move. NOTHING WOULD BE IMPOSSIBLE.” (Matthew 17:20)

Keep praying!

Believing in the Impossible,
Cindy

Sunday, January 29, 2006 7:02 AM CST

Jay's culture showed that he has a fungus growing in the lower right lobe. We have started an antifungal that he will get for 7 days. In the A.M. a temporary line will be put in his arm so that he can receive this medicine from home. The plan is to check out Monday P.M.. We will finally begin his chemo back Monday P.M..

Thanks for all the prayers, meals, babysitters, animalsitters, visitors and everybody else that has helped us during these stressful days. Cindy and I really appreciate all the help.

In His Grip, Jason

Friday, January 27, 2006 4:53 PM CST

The CT scan was somewhat inconclusive, and reported that the right lung appeared to be “concentrated”...Whatever that means. Dr. Al and Dr. Logan (lung specialist) decided to go ahead and do the Bronchoscope this afternoon. Dr. Logan was able to suck out a good bit of mucus and will be sending it for cultures. He also said that the airway appeared to be in good shape and there is no visible sign of damage (praise God!). The cultures should tell us exactly what organism we are dealing with so we can treat appropriately. We will get a preliminary read sometime tomorrow, and should have a better idea of when we can go home. Tonight, Jay will be in the PICU for observation, and will return to his room in the morning.

Thanks for checking in, and I will update again soon! Keep praying!

Love,
Cindy

*Claire and Erin, Thanks for helping to keep Jay's mind off being NPO the past two days in a row! You guys are awesome!

Thursday, January 26, 2006 10:13 AM CST

***UPDATED 9:30pm***
The CT scan was performed this evening and we should know the results by in the morning. Keep praying!
***************************************

Sorry for the delay...we do not have access to a computer at the hospital, so I can only update when I am home...which unfortunately, is not very often.

The good news is that Jay’s counts are up! His white count is 4.00 and his ANC is 1,000. His ANC needed to be over 500 to restart treatment. His platelet counts seems to be holding steady without the cross-matched platelets. Dr. Al said that God must have cross-matched them with the last transfusion. He just continues to amaze Jason and I with how he gives God the glory for Jay’s progress. He has told us several times that he is praying for Jay and believes in miracles. How awesome is that!?! Without a shadow of a doubt, God is going to do(and has already done) great things for Jay through Dr. Al. I am sure of it!

Okay, now the bad news. The chest-x-ray is still only showing small changes in the right lung. Over the past year or so, Jay has developed Pneumonia several times and it has always been in the right lung. Even when he is well, a chest x-ray will show a shadow in the right middle lobe. So, now we are questioning what we are seeing. Is it all being caused by the Pneumonia, or could we possible be seeing chemo damage? Dr. Al has ordered a CT scan for a better look. We hope to know something later today. Please pray. We cannot start treatment until this is resolved.

During my frustration this morning, God placed this verse on my heart. It couldn’t of been more perfect!

“Faith means being sure of the things we hope for and knowing that something is real even if we do not see it.” (Hebrew 11:1)

Trusting in what our eyes can’t see,
Cindy

Monday, January 23, 2006 5:03 PM CST

Well, we are still in the Big House....

Jay’s white counts is still very low(0.35)and even after three transfusions, his platelet count continues to drop. We have doubled the G-shot(white blood cell booster) to stimulate his bone marrow, and he will be receiving cross-matched platelets(matched specifically to his platelets) later this week. The cross-matched platelets comes from South Carolina, and will take a few days to get them here. We believe that there are a couple of things working against us 1) the G-shot depletes the platelets, 2) due to past multiple platelet transfusions, Jay’s blood has developed an antibody that is eating up the foreign platelets. Dr. Al seems to think that the cross-matched platelets will do the trick, and the double dose of GCSF will increase the white count. Jay is now a week off treatment, so it is very important for his counts to come up so we resume. Please pray that we find a resolution to this soon.

Jay also had an x-ray today, and his lungs are continuing to improve. Praise God! Now if we can get a handle on his blood counts we will be in business!

Thanks for checking in! Keep praying!

Love,
Cindy

Saturday, January 21, 2006 10:55 PM CST

Jay is doing okay. His chest x-ray showed some improvement, but his white blood cell count is still way too low. The theory is that as Jay’s bone marrow makes white blood cells, his body quickly rushes them to his lungs to fight the infection. In turn, there are just not enough left over in his blood. So, Dr. Al seems to think that it will be at least Monday before we see a difference in his blood counts. Yesterday, Jay had an allergic reaction to one of the antibiotics, so we had to switch to a new one. He developed this funky rash on the palms of his hands and the bottoms of his feet, and his cheeks and ears were raspberry red. This evening, he again showed signs of some type of reaction(red cheeks and ears), so we are going to slow down the infusion to see if that will help. Leave it up tp Jay to keep everyone on their toes! He is determined to uphold his reputation as the complicated patient!

Clinically, Jay continues to make baby-steps. Today, his appetite seems a little better, His color appears to be improving, and he has had a few more “perky” moments. This weekend he has really enjoyed Kaitlyn being around to entertain him. She has gotten more smiles and giggles out of him than the rest of us combined! She has definitely been good medicine.

Well, we are going on five days of being inpatient and really don’t have a clue when we might be able to go home. The four purple-people-eater walls are closing in on us quickly, and being in isolation doesn’t help the situation. We did ask for an upgrade to a bigger room, but they just laughed...because there is no such thing. For some reason, the Funny Farm song continues to run through my mind as the “masked” nurses and doctors come in and out of the room....

They're coming to take me away, HA HA
They're coming to take me away, HO HO HEE HEE HA HA
To the funny farm
Where life is beautiful all the time
And I'll be happy to see
Those nice, young men
In their clean, white coats
And they're coming to take me away, Ha-haaa!

Jason said that he was going to make a sign for our door that says, “BEWARE, PARENTS ARE CRAZY”. I told him that it wasn’t necessary, I am sure it is written and highlighted somewhere on Jay’s chart. They figured that one out a long time ago.

A big thanks to everyone who has stopped by to visit and for all the wonderful meals. It has really helped to make our stay a little more pleasant. You know, a person can only eat Subway and McDonalds so many times...that in itself could send me to the Funny Farm!

Hopefully we will be going home very soon....for everyone’s sanity. I think some sleep would do us all some good, so I am off to bed. Thanks for checking in, and keep praying!

Love,
Cindy

Thursday, January 19, 2006 7:59 PM CST

The chest x-ray appeared to be worse than two days ago, but clinically Jay seems to be improving. No fevers, eating a little better, breathing much better, and talking a bit more. The Pulmonologist wants to see how Jay is tomorrow and possible repeat the x-ray. If the Pneumonia is not getting better, the doctor may recommend doing a Bronchoscopy. A Bronchoscopy is a procedure where a tube is inserted down the nose into the lung and a sample of the “junk” is sucked out for cultures. Since Jay’s counts are low, the spectrum of what organism is causing the Pneumonia is very broad. We currently have three antibiotics on board in hopes to cover this broad spectrum, but the culture would be able to specifically identify the organism and we would know how to treat it appropriately. Hopefully, Jay will continue to improve and we can continue on with what we have been doing.

Keep praying and I will update again soon!

Love,
Cindy

Thursday, January 19, 2006 9:59 AM CST

Yesterday morning, Jay was having a tough time breathing especially when he would sit up. We had to increase his oxygen level and he was doing a lot of drooling. Dr. Al was concerned that we were seeing signs of tumor pressure in the brain in conjunction with the Pneumonia. He ordered a CT scan, and tapped Jay’s Ommaya. Jason and I were very concerned and anxious to see what the CT scan showed. Dr. Al told us that if the tumors appeared to be worse, we may have to stop treatment all together. Yesterday afternoon, we received some very positive news and an answer to lots of prayers...compared to the MRI from two weeks ago, the tumors appear to be STABLE! Thank you God! Our last MRI had shown that the tumors had doubled in size in just two short weeks. Yesterday’s scan showed no growth in the same time span! We are thrilled with the news! Dr. Al was even giddy!

Today, Jay seems to feeling a hair better. We have taken him off the oxygen while he is awake, and he is holding his own much better compared to yesterday. His color looks a little better and he is talking more. Jay’s blood counts are still very low and he will need a blood transfusion today and probably Platelets tomorrow. Dr. Al has also ordered another chest x-ray today to see how is lungs are looking.

I will update again this evening. Keep those prayers coming!

Love,
Cindy

Tuesday, January 17, 2006 9:29 PM CST

Just a quick update to let you know that Jay was admitted to the hospital today. A chest x-ray confirmed Pneumonia in his right lung, his O2 stats are on the low end(86-88), and he is Neutropenic(not a good combo). For the time being, we have stopped treatment until his blood counts recover, and we started Neupogen shots(G-shot) to help boost his white blood cells. We are treating the Pneumonia with IV antibiotics, breathing treatments, chest PT and he is receiving a little oxygen. Hopefully, we can get him turned around in a few days.

Please pray for a quick recovery! I will keep you posted.

My motto for the day:
"Remain calm; the Lord will fight for you" (Exod. 14:14)

Tuesday, January 17, 2006 8:15 AM CST

Yesterday afternoon, Jay appeared to be struggling to breath and his heart rate was elevated. By early evening he had lost his appetite and was running a fever. With Jay’s history, I had a hunch that he probably had or was developing Pneumonia, so we called the Hospice nurse. After evaluating him, she agreed with us and called the on-call doctor. Not knowing Jay, the doctor was leaning towards sending us to the hospital. As we were discussing what we should do, I remembered that I have Dr. Vernon’s(our Pediatrician) cell phone number. The nurse called and left Dr. V a message about Jay, and ten minutes later he called us back. Dr. V had the nurse call in a antibiotic and instructed us to start breathing treatments. This morning Jay is coughing more(a good thing), but is still very weak. His breathing seems slightly better and he is not running a fever. We have an appointment with Dr. Vernon this morning, and hopefully we will be able to continue what we are doing at home.

This is the perfect example of why we wanted Hospice involved in Jay's care. Because of them, we were able to avoid a trip to the hospital and can hopefully treat Jay at home. What a blessing!

I will keep you posted!

Sunday, January 15, 2006 8:13 PM CST

Jay has been a bit more subdued the past few days. Thankfully, he has not complained of headaches and besides a couple of catnaps, he has been awake and alert during the day. As I have said before, Jay has shown to be ultra sensitive to steroids in the past. In most children, steroids cause hyperactivity, mood swings, and aggressive behavior. Jay tends to do the complete opposite, and develops a very rare(imagine that!) disorder called Steroid-Induced Psychosis. He becomes withdrawn, doesn’t want to walk or talk, as little to no interest in playing. It’s almost like he is depressed. St. Jude diagnosed Jay with Psychosis shortly after his brain surgery in 2003, and we also saw indications of it in 2004 right after he was in the ICU for seizures. Although we are not to those extremes(yet), I am afraid that he may be headed in that direction. Jay is not as active as he was a few days ago, he is very quiet and will only talk when prompted, he is not even attempting to walk, and he seems perfectly content to just sit on the couch and eat. Another reason for his inactivity, is the weight gain which is also a nasty side effect of the steroids. In just one week, Jay has gained five pounds and it has all gone to his face and tummy. My poor baby looks like a mini Buddha, and his belly button has a frightening resemblance to mine when I am about nine months pregnant! Actually, at nine months pregnant, it was also difficult for me to walk and talk(especially at the same time!), and I would have given anything to have sat on the couch all day eating! I can definitely sympathize!

Tuesday afternoon we will see Dr. Al and discuss our concerns with him. I am not sure what we can do, but I am going to ask about cutting back the dose a little. If I had to guess, he will probably want to wait until our next MRI which we hope to schedule for the end of this month. Again, please pray for wisdom and guidance....

The Place of Surrender

“This left Jacob all alone in the camp, and a man came and wrestled with him until dawn. When the man saw that he couldn’t win the match, he struck Jacob’s hip and knocked it out joint at the socket. Then the man said, “Let me go, for it is dawn.” But Jacob panted, “I will not let you go unless you bless me.” (Gen 32:24-26)

Jacob feared a reunion with his older brother Esau who had threatened to kill him for stealing his birthright. It had been twenty years, and now it was time to face his brother and Jacob was terrified. He had a history of being controlling, manipulating, and wanting to do it “his way”. But this time he knew that God was his only hope. He wanted God’s blessing so badly that he wouldn’t let go of the angel God had sent. So the angel dislocated Jacob’s hip. It was the only way God could overcome his strong will. Finally, Jacob reached a place of complete surrender. He would no longer walk in his own strength. He would now walk with a limp, symbolizing his dependence on God alone. (Grace for Each Hour)

Controlling, manipulating, like to do things my way...Whew! Sounds way to familiar! Well, you know what? God loves me too much to leave me that way, and Jay’s illness has become my broken hip. It has brought me to my knees time and time again, and that is when I am fully dependent on God alone. Everyday during this two and half year journey it has kept me there...seeking His face and His will.

And like Jacob, I will continue to cling and pant, “I will not let you go until you bless me.”

Keep praying...

Love,
Cindy

Thursday, January 12, 2006 5:24 PM CST

“Praise God and ask God for everything you need, always giving thanks.” -Philippians 4:6

Giving thanks for another good day for Jay, a positive experience with Hospice, caring and compassionate care givers, good friends who support me, a family who embraces me, and a Heavenly Father who never fails to meet all of my needs.

Even in the midst of the uncertain, we have so much to be thankful for!

Keep praying!

Love,
Cindy

Wednesday, January 11, 2006 2:43 PM CST

Do I dare say that today was an even better day? Well, it was! Thank you God! Again, Jay started out the morning by walking down the stairs by himself. He is still not walking during the day, but for some reason he is determined to come down those stairs. Jay has also played play-doh, colored, asked to play in his room with his tractors, played video games(which by the way, requires him to use his left hand!), and he has played computer games. He has been awake for most of the day( took one short catnap), alert, happy, hungry, and demanding as ever! What a blessing this day as been!

Tonight we are meeting with Hospice(between 5-6) to get started. They will accept Jay into their program on treatment. Please say a special prayer for all of us as we prepare for this next step. Even though this does not mean we are giving up, it is still difficult. Hospice is one of those things you hope you never even have to consider. We just pray and have hope that one day Jay will go down in Hospice history as a miracle!

Thank you for your continued prayers.

Love,
Cindy

Tuesday, January 10, 2006 10:39 AM CST

Something we discussed with the Neurosurgeon last week was tapping Jay’s Ommaya Reservoir to see if that would give him some relief from the pressure. The Ommaya is a device that was implanted under Jay’s scalp in 2003, and was used to deliver chemotherapy to the Cerebrospinal Fluid. We can also draw off spinal fluid for testing purposes and/or to relieve pressure. Last week, I didn’t aggressively pursue this procedure because I got the impression that Jay needed to be much worse for the Neurosurgeon to agree to do it. Well, as you know since then, Jay has progressively worsened and I felt that now was the time to pursue. Dr. Al and Dr. Troup agreed(Wow, two doctors agreed?!), so yesterday we tapped the Ommaya. Immediately, Jay seemed to feel slightly better, and this morning he got out of bed and walked down the stairs by himself! Yes, it scared me to death that he even tried to attempt it, but I was also gleaming with joy that he was able to do it! Unfortunately, tapping the Ommaya is only a temporary fix, but we now know that we can resort to using it again if necessary.

Also, I had a long conversation with Dr. Vernon yesterday and was able to vent some of my frustrations. He agreed with me that Jay does need more one-on-one medical care then he is receiving, and to avoid being admitted to the hospital, our best choice is to get Hospice involved. Dr. V even said it himself, this does not mean that we are giving up. We are only making sure that Jay is getting everything he needs at this time. The only catch may be that Hospice usually does not allow patients who are currently on treatment. We are not willing to stop treatment, so we are praying to be an exception. Dr. V seems to think that it won’t be a problem, and he will be checking into it today. We hope to know something soon.

Dr. Al and Dr. Vernon both mentioned “not giving up” and “praying for a miracle”. It is good for the soul to hear that doctors on my son’s medical team have faith in more than just medicine. It is good to still hear “hope” from those who are guiding us. I truly believe that it is not by accident that they are the ones who are taking over what appeared to be a sinking, abandoned ship. Now we can get back on course and pray for only smooth sailing.

Speaking of miracles, check out Catie’s(ga/catie) page to witness what appears to be another miracle in the making!

Also, please pray for our friend Savannah(fl/savannah)who has an MRI today due to pain in her spine.

Thank you for your continued prayers.

“I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock in whom I take refuge. He is my shied and the horn of my salvation, my stronghold. I call to the Lord, who is worthy of praise, and I am saved from my enemies.” -Psalm 18:1-3

This verse was part of Kaitlyn’s Bible lesson in school yesterday. Just thought I would share it with you.

Love,
Cindy

Monday, January 9, 2006 10:18 AM CST

By far, Friday and Saturday have been the worse days for Jay. Since Friday, Jay has stopped walking without assistance, he has stopped using his left hand, his breathing seems different, he is sleeping more and eating less. The headaches seems to come and go throughout the day, but he appears to tolerate them okay. Once again, we have increased his steroid dose to see if that will make a difference. I have also changed up his treatment drugs since one of them causes drowsiness. He is now only receiving that particular one at night. Needless to say, Jay was not feeling up to truly enjoying his birthday parties. We did get a few of his famous crooked smiles when Chuck E Cheese made his appearance, and he smiled as I opened his gifts back at home. It was just heartbreaking to see my child, who not so long ago, would have been running around with his friends, playing games, and beyond excitement to open his gifts. Instead, he was only able to watch from afar, and then eventually curled up in a booth and fell asleep.

Yesterday was a slightly better day for Jay. He woke-up wanting to go to the mall, and of course whatever Jay wants, Jay gets. So, we all got dressed and met my parents at the mall for lunch. Jay enjoyed riding around in the stroller and he even got up and rode the cars. He requested Chinese for lunch, and wanted to sit by the fountain to eat. Afterwards, he was determined to clear everyone’s trash from the table and throw it in the trash can. He also patiently endured several hours of his sister and cousin shopping for a new-matching outfit. Poor guy, I don’t think he realized what he was getting himself into by requesting to go to the mall with two girls who love to shop! Last night he was obviously worn-out from the days activities, and napped on and off on the couch until bedtime. Of course, he was wide-eyed and bushy-tailed this morning at 5 AM! He is currently resting on the couch watching cartoons. Praying for another good day...

Not only do Jason and I feel so helpless, but we also feel lost. Like I said in my last post, everyone involved in Jay’s treatment seem to have a different opinion in what we should or should not do, but no one is offering direction. One institution says that Jay is dying, but has offered no further guidance or support. Dr. Al(the oncologist here) is such a caring doctor who wants to support us anyway he can, but since we are only asking him to follow Jay on this new study, it is really not his responsibility to go any further than that. So, after much prayer, I decided to call our best and sometimes only advocate, Dr. Vernon(our Pediatrician). I expressed that I feel like Jay needs more medical attention then he is receiving, and if that calls for Hospice to step in, the so be it. Dr. Vernon agrees and supports us and we will hear from him again later today. I also spoke with Dr. Al’s nurse, and we have an appointment this afternoon with Dr. Al for blood work and a physical. I will also discuss my concerns with him and get his advice. By no means does this mean that we are giving up on Jay. My prayer continues to be that Jay will once again beat the odds and pull through. We will always be hopeful for another miracle. But, that does not mean that we just sit around with our heads stuck in the cloud of denial and ignore that our son needs more medical attention than he is getting. Even though we are dangling in limbo, we are thankful that God has given us the knowledge and the sense to realize what Jay needs. Hopefully, we will get some direction today.

Also, please pray for our friend Catie(ga/catie). Catie had her third brain surgery today to remove what appears to be tumor. Catie and Jay have the same diagnosis.

Thank you for your continued prayers.

Full of Hope,
Cindy

Thursday, January 5, 2006 9:23 PM CST

***UPDATED FRIDAY, 6TH***
PLEASE SEE BOTTOM OF THIS PAGE FOR A DEVOTION THAT HAS ENCOURAGED ME TODAY. THANK YOU!

Overall, Jay has had a pretty good day. This morning was a little rocky with headaches and fatigue, but after lunch he perked up and was able to enjoy his birthday. Jay also had two very special visitors today. His Granddaddy and his favorite nurse Mrs. Terri were here to have lunch and spend the day with him! He was very surprised and Jason and I were both thankful to have both of them here. Granddaddy helped out with Kaitlyn and Tanner while we went to see the doctor and Terri went with Jay and I for moral support. For those of you who don’t know our Mrs. Terri, she was Jay’s sedation nurse at St. Jude during 36 radiation treatments and continues to take care of him during MRI’s. She has become more than a nurse to all of us and we are just blessed to have her in our lives! Thank you to Granddaddy and Terri for making the special trip!

Skipping all the ugly details, I am just going to say that the meeting with the our Neurosurgeon ended a heck of a lot better than it started. St. Jude believes that placing a shunt would be inhumane and would only prolong “the process”. After much discussion, we have agreed to send the MRI films to Boston to get there opinion. If Boston says to do it, then Dr. Troup will do it. Frankly, if I hear one more “opinion” I think I am going to barf! I do want to get one thing straight...I am not pushing for a shunt, and I would rather Jay not have a shunt. I am all about avoiding surgery especially under these circumstances. We only pursued this because our Oncologist suggested that he have one. Jason and I are his parents and only want what is best for him. We do not regret any decision that we have made so far regarding Jay’s treatment, and we don’t plan on screwing up now. Decisions have never been made in haste or out of our own selfishness. Through God’s guidance and wisdom, the choices we have made is why Jay is alive today. Jay is in God’s hands, and no one else has the right to predict how and when he is going to die. His destiny is not controlled by “opinions”. So with that said, I just pray that my All Mighty, Merciful Heavenly Father continues to prove them all wrong!

Against all hope, in hope I believe,
Cindy

*Thanks to all of you who have left birthday messages, sent cards, gifts and balloons! You have helped to make Jay’s birthday extra special! We love you!

***************************************
Bitterness and anger were obviously overwhelming me last night and this morning. I guess you could say the enemy really knows how to ruffle my feathers by using others criticism. This devotion from Beth Moore came in the nick of time...

Coping With Criticism
Scripture Reading: Nehemiah 4:1-6

Today’s Treasure: “Hear us, O our God, for we are despised. Turn their insults back on their own heads. Give them over as plunder in a land of captivity” (Neh. 4:4).

The enemy will do virtually anything to steal our focus as we serve Christ. In his attempts, he often sends something more powerful than an outbreak of boils. He sends criticism, and he never lacks a willing vessel. The world is filled with amateur critics. Satan just instructs them to do what comes naturally.

God appointed Nehemiah to lead the Jews in rebuilding the walls of Jerusalem. At the first sign of success, critics raised their ugly heads. Their criticism came in the form of ridicule. Nothing makes you want to quit as much as feeling stupid. The enemy preyed on their hidden fears that the task might be too much for them.

Have you ever been there? I have! The moment someone spoke my fears, my heart nearly melted. Soon I thought the task was never God’s idea in the first place. Many times I might have given up in despair, but God kept reconfirming His will.

If we successfully accomplish our God-given tasks, we must learn to deal with criticism. Nehemiah was a wise man. He knew exactly how to deal with his critics. He told God about them. Look at his words. You even have my permission to grin a little.

Nehemiah went straight to God and said things like, “Turn their insults back on their own heads.” We said the same sort of things when we were kids—we just used a little different terminology: “Same to you but more of it!”

Nehemiah didn’t direct his statements to his critics, however. He shared his feelings with God. He poured out his heart until he felt better. The result? “So we rebuilt the wall till all of it reached half its height, for the people worked with all their heart.”

The enemy’s attempt to steal our focus is actually an attempt to remove our hearts from our God-given tasks. The center of our focus fills our hearts. If we’re focused on criticism and the subsequent feelings of bitterness and inferiority, our hearts will give up the task. Our effectiveness will suffer terribly. Today’s Bible example offers a new defense to Satan’s better-than-boils strategy. I call the defense “operation tattletale.”

When you’re working with all your heart to accomplish God’s will and the enemy throws criticism your way, take it to God immediately. He will take up your cause and return your heart and your focus to the task.

A last thought. Is all criticism from Satan? Unfortunately no. How can we know whether or not a criticism is from the enemy? Satan is the father of lies. His criticism will be untrue. If the criticism fits, DON’T QUIT! Just readjust. (I’ve been there, too.) If you know God has called you to the task, you may be laying the right bricks—but at the wrong angle. God won’t leave us stranded with an armload of bricks. Go ahead and unload—then get your heart back in your task.

Lord, it is so painful to be criticized when I’m trying to accomplish what I believe to be Your will. It often feels like my greatest fears about myself have been confirmed. I need your help to overcome the distracting, discouraging nature of criticism. Please help me bring the hurtful words and painful feelings to You immediately. Take up my cause and redirect my heart to focus on the task. In Jesus’ name, Amen.

Wednesday, January 4, 2006 8:34 PM CST

***HAPPY 5TH BIRTHDAY TO OUR JAY!!! WE LOVE YOU!****

This will be quick due to hospital exhaustion....

The MRI showed that there has been significant growth with all three tumors, and Jay’s 4th ventricle is blocked due to pressure from one of the tumors. The blocked ventricle has been an issue since radiation, but Jay was never symptomatic. The uncontrollable headaches and lethargic behavior we have seen is probably due to the ventricle getting worse from the growing tumors. We are scheduled to see the Neurosurgeon(Dr. Troup, who did Jay’s brain surgery in 2003) tomorrow to discuss a possible shunt placement. We will compare films from the MRI a few weeks ago to see how much worse it has really gotten. Hopefully, a decision will be made pretty quickly. Jay also started the new study drugs tonight and we will do another MRI in three weeks. I will update again tomorrow night.

Keep praying....

Tuesday, January 3, 2006 4:41 PM CST

Jay had a very rough weekend to say the least. Saturday afternoon he began to complain of headaches which continued until bedtime. Sunday morning he woke-up still hurting, but the pain was definitely more intense. He slept off and on for most of the day and didn’t have much interest in fishing or playing. When we did get him up moving around, he would wear down quickly and want to go back to sleep. I adjusted his steroid dose Sunday night and changed the times we were given them to see if that would help. I am now getting up in the middle of the night to give him a dose, and that seems to be helping with the morning headaches. Actually, Jay has not had a headache in two days. Monday and today he has been a different child. No headaches, less sleeping, and he has enjoyed playing. It is difficult to describe how sick he really got. All I can say is there were several moments Sunday that we thought we were losing him. Jason and I were scared to death, but now we are just thankful that he has made such a drastic turnaround.

I spoke with Dr. Al’s nurse today, and all the medicines should be ready tomorrow after lunch so we can begin treatment that evening. Insurance has approved all but one(Celebrex), which will hopefully get approval soon. Also, we are scheduled to do an MRI tomorrow at 2pm. I requested a scan due to the instability we have seen in Jay over the past two weeks, and to get a baseline before starting treatment. I will be sure to post results as soon as I know something.

On a good note, Jay is turning five in two days!!! His birthday is Thursday the 5th, and we are going to celebrate this weekend with a indoor swimming party and a trip to Chuck E Cheese(WHOOHOO!). Jason asked Jay what he wanted for his Birthday, and he said, “Nothing, I already have everything!” Now, how many almost five year olds would have said that? Only one that I know of, my sweet Baby Jay!

Jason’s Mom gave me a new Max Lucado devotional for Christmas, and she pointed out the devotion on Jay’s Birthday that I would like to share with you.

Don’t Miss God’s Answer

“Is anything too hard for the Lord? No!” (Gen 18:14)

The God of surprises strikes again...God does that for the faithful. Just when to womb gets to old for babies, Sari gets pregnant. Just when the failure is too great for grace, David is pardoned...
The lesson? Three words. Don’t give up....
Is the road long? Don’t stop.
Is the night black? Don’t quit.
God is watching. For all you know right this moment...the check is in the mail.
The apology may be on the way. The job contact may be on the desk. The miracle in the making.
Don’t quit. For if you do, you may miss the answer to your prayers.

NEVER GIVING UP,
Cindy

Saturday, December 31, 2005 10:27 AM CST

Jay is still hanging tough! Yesterday morning was a little rough with headaches, but with an extra dose of steroid he was feeling better around lunch time. This morning he did complain of a headache right after he woke-up, but so far his regular dose of steroids is holding him. He is currently cuddled up on the couch watching Saturday morning cartoons.

This afternoon we are planning on sneaking away to the lake house for New Years. Nanna and Pappa gave Jay a new fishing pole and new tackle for Christmas that he is anxious to tryout. Tomorrow is suppose to be beautiful, and we are hoping to enjoy some time outside.

Yesterday, Jason spoke with Dr. Al’s(the local oncologist) nurse. Since we are choosing to receive treatment here, Jay will not technically be part of the Boston study. When someone is treated under a study, the medications are free to the patient, but outside of the study, you must file under insurance. So, all the info was sent yesterday to our beloved insurance company(gotta love ‘em!) for prior approval. I have to laugh when I think about the drugs we are asking for our insurance to approve for a five year old. Of the five drugs, three of them are used only in adults, and two of them have very controversial backgrounds. The first one is Thalidomide, which was given to pregnant women back in the 50's for morning sickness/sleeping pill and was snatched from the market due to it causing birth defects. A few years ago, it was brought back into the cancer laboratories and has shown to be effective in stopping tumor growth. The other most recent controversial drug is Celebrex. Used frequently for arthritis in adults, and also snatched from the market due to possibly causing heart attacks. It was brought back recently, but doctors still have conflicting views about this drug. It has also been shown(in laboratories) to be an effective anti-cancer agent, especially in breast cancer. The other “adult” drug is Fenofibrate, which is a fairly new drug that is used to lower cholesterol. The last two drugs used in this protocol are Etoposide and Cyclophosphamide, which are commonly used chemotherapies that Jay has taken before. So, we are asking our insurance to approve and pay for a drug for morning sickness, one for arthritis, and another one for lowering cholesterol. They will probably do a double take at Jay’s age....”Is this patient 5 or 50?” Leave it up to Jay to be the challenging patient! I’m not sure Dr. Al realizes what he is getting himself into by agreeing to treat us, but I can assure him that there will never be a dull moment! I believe we will go down in St. Jude history for that! We should hear something by the first of the week, and hope and pray to get Jay started ASAP.

Thank you again for your phone calls, emails, guestbook messages, and most of all, for your unceasing prayers. We are so thankful and blessed for all you.

Happy New Year!

Love,

Cindy

Thursday, December 29, 2005 3:44 PM CST

***UPDATED 7:30pm***Our internet service is back up and running! Thanks to Lisa for updated for me! Jay is doing great! Keep praying!
love, Cindy

***************************************

This is Lisa Hellier updating for Cindy & Jason. The lightning and thunderstorms of Wednesday afternoon took out their internet and phone line connections. Temporarily they are unable to receive any emails. But you can always leave guestbook messages for them to check when their connection is re-established.

On Wednesday Cindy & Jason took Jay to meet with the Macon oncologist, and he was willing to follow Jay here with the Five Drug protocol. Cindy has been busy yesterday and today getting all of the preliminary tests completed. The pharmacy is working on getting the necessary drugs in stock for Jay. The plan and prayer is to be able to start the new protocol sometime next week.

Jay has been a real trooper through everything and has had two good days of playing with his Christmas presents.

Thanks to everyone for all of the prayers and support. We are all trusting God to continue to do great things in this family's life.

Tuesday, December 27, 2005 1:00 PM CST

God sustained Jay and allowed us to have a wonderful Christmas day! Jay appeared to be feeling great and enjoyed spending time with his Granddaddy, GiGi, Pappa, Nanna, and Uncle Joey(my baby brother). He played hard until bedtime, and never complained about headaches. I do believe that his favorite gift from Santa was a blue scooter that he rode around the house most of the day. He never ceases to amaze me!

Unfortunately, yesterday was a different story. Jay woke up with a headache that just seemed to worsen throughout the day. He slept on and off most of the day, but when he was awake he was in excruciating pain. He would roll around in the bed, holding his little head, and would beg me to make it stop hurting. Jason and I felt so helpless and it was killing us to see him hurting so bad. Jason called Dr. Gajjar for his guidance, and he said for us to give Jay a bolus dose of steroid (4 pills at one time) , and to double his daily dose. By dinner time, Jay was feeling much better and went on a feeding frenzy which is a side-effect of the steroids. He consumed two days worth of calories in about thirty minutes! He slept well last night, and so far, he has had a good day today. Right this moment, he is at work with is Daddy selling tractors, which is one of his most favorite things to do.

Dr. Gajjar also said that Jay would need to stabilize for a few days before we could start the new treatment. I talked with the doctors in Boston last week, and for quality of life purposes, they have suggested that we do their “Five Drug Protocol” either at St. Jude or under the care of our local Oncologist. I am anticipating to hear from our Pediatrician today or tomorrow regarding the local Oncologist, and Dr. Gajjar will contact us again this week to see how Jay is doing. As long as Jay is stabilized(minimal headaches, vomiting and sleepiness), we will start treatment soon. We may have to travel to Memphis to get started, but all of the drugs are oral and can be administered at home. Again, please pray for wisdom for all involved....

“To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, my power is made perfect in weakness.” (2Cor. 12:7-9)

When I am praying for Jay, I struggle with telling God what to do and how to do it. For instance, I have looked up many times and said, “Okay God, this has gone on long enough, we need a miracle now!” or “This would be the best way, with this treatment, at this time.” And every time, God gently nudges me and says, my dear child, “My grace is sufficient for you...”

Max Lucado tells a story about a passenger plane that has burst into flames and is going down. The pilot rushes out of the cockpit and yells, “We’re going to crash! We must bail out!” Good thing that he know where the parachutes are because none of the passengers do. He begins to pass them out, gives everyone a few pointers, and throws open the door. The first passenger steps up to the door and shouts over the wind, “could I make a request?” “Sure what is it?” “Any way I could get a pink parachute?” The pilot shakes his head in disbelief. “Isn’t it enough that I gave you a parachute at all?” And so the first passenger jumps. The second passenger steps to the door. “I’m wondering if there is any way you could ensure that I won’t get nauseated during the fall?” “No, but I can ensure you will have a parachute for the fall.” Each person comes with a request and receives a parachute. “Please captain”, says one, “I am afraid of heights. Would you remove my fear?” “No,” he replies, “but I will give you a parachute.” Another pleads for a different strategy, “Could you change the plans? Let’s crash with the plane. We might survive.” The pilot smiles and says, “You don’t know what you are asking” and gently shoves the fellow out the door. One passenger wants some goggles, another wants boots, another wants to wait until the plane is closer to the ground. “You people don’t understand,” the pilot shouts as he “helps” the passengers one by one. “I’ve given you a parachute; that is enough.”

Only one item is necessary for the jump, and he provides it. He places the strategic tool in their hands. The gift is adequate. But are they content? No. They are restless, anxious, even demanding. Too crazy to be possible? Maybe in a plane with pilots and parachutes, but on earth with people and grace? God hears thousands of appeals per second. Some are legitimate. We, too, ask God to remove the fear or change the plans. He usually answers with a gentle shove that leaves us airborne and suspended by his grace.

No matter what happens, Jason and I must trust that the parachute is strong, and the landing will be safe. His grace is sufficient for all of us.

Keep praying...

Cindy

Saturday, December 24, 2005 8:16 PM CST

This morning was very similar to yesterday morning...headaches, sleepiness, etc. The difference was that Jay did not throw-up and it didn’t last as long. He was up and about and back to his old self by Noon. This afternoon he appeared to be feeling great, and right this moment he is riding a new bike around the house and chatting about what Santa is bringing him. We started the steroids and will slowly increase until we some see improvement. Hopefully it will only take a minimal dose. Jay’s little body has always been very sensitive to steroids and the side effects aren’t too pretty.

We attended the Christmas Eve service tonight and our wonderful Minister called us up, prayed over Jay, and anointed him with oil. Once again, united with our church family, we have asked God for his healing touch on Jay...our Christmas miracle.

Well, elf duty calls! We wish you all a very Joyous and Merry Christmas! Thank you for your prayers!

Love,
Cindy

Friday, December 23, 2005 12:39 AM CST

***UPDATE 8:30pm***
Jay is 100ercent better. Around 2:30pm he asked for something to eat, was up doing arts and crafts at the breakfast bar, and has not complained of a headache since around noon. He is also a totally different child this evening and has been running around playing with Kaitlyn and Tanner. He has only had Motrin once today and we have not started the steroids yet.

I will update again tomorrow. Thanks for your prayers.
***************************************

Believing God When Victory Demands Your All...

“For children of God, a perfect setup for catastrophic defeat is also the perfect setup for a miraculous victory. Difficulty is actually the atmosphere surrounding a miracle in it’s initial stage. Yet if it is to be a GREAT MIRACLE, the surrounding condition will be not simply a difficulty but an utter impossibility.” - Beth Moore

Jay woke up this morning with headaches, vomiting and extreme fatigue. He has only been awake for short periods of time, and when he is awake he complains that his head is hurting. After talking with Dr. Gajjar and our On-call Pediatrician, we will start steroids today in hopes to alleviate some of the symptoms. These are all signs of pressure from the growing tumors.

The verse that is at the top of Jay’s webpage is one that God laid on my heart almost two years ago when Jay was in ICU having life-threatening seizures. Romans 4:18-19 says, “Against all hope, Abraham in hope believed....without weakening his faith.” This verse we have claimed for Jay many times on this journey, and still today, with what appears to be an utter impossibility, we claim it once again. Please pray.

All I want for Christmas is a miracle....

Cindy

Tuesday, December 20, 2005 9:06 AM CST

Sorry for the delay...we left right after the MRI yesterday at 6pm(EST) and did not get home until 2am.

The MRI showed that all three tumors have doubled in size since October. Jay also had an EEG yesterday, and it did not show any seizure activity. The Neurologist said that it is possibly a movement disorder that can be common in children with Medulloblastoma. After seeing the MRI, Dr. G seems to think that the spasms in Jay’s face are tumor related. Jay is also having some right eye blurriness that is probably also from the tumor pressure. The plan right now is to take a break through Christmas and next week we will see what studies are open. Thankful there are still a few options at St. Jude, and we are also investigating a study that is at Boston Children’s Hospital. One of our St. Jude friends has been in the study for some time now and has had some positive results.

Please continue to pray for wisdom for us and for Jay’s treatment team. Most importantly, please pray for Jay. We are in desperate need of another miracle.

Weary but Not Giving Up,
Cindy

Friday, December 16, 2005 2:46 PM CST

I know that I have been terribly slack with updating and I do apologize. Just always remember that with us, “no news is probably good news”! I guess you could also say that being home on treatment has given us an opportunity to “pretend” that we are just a normal family doing normal things....Wednesday night supper, carting Kaitlyn around to all her extra-curricular activities, spending time with our friends, cooking dinner, lots of shopping, decorating for the holidays, hosting Christmas parties, and I have even been working a little bit to earn some extra money for all the shopping I have been doing! With all that has come less computer time for me, and less updating. In a way, not updating just was just part of the pretending:)

So, like my dear friend Julie(Easton’s Mom) would say, here are the highlights:

Jay has been doing extremely well. He has truly enjoyed being home and his little personally is just blossoming. Before diagnosis, Jay was a very out-going little guy. He was a people person and enjoyed being the center of attention. The instability that he has experienced over the past two years had caused him to become very shy and withdrawn. Since our last visit to Memphis, I have been seeing glimpses of my old Jay. While in public, I have witnessed him striking up conversations with strangers, and at church he has become the little social bug. The past few Sundays he has handpicked who he is going to sit with and it hasn’t been Mommy and Daddy! This is just further proof of what being home together as family will do. What a blessing!

Up until this past week, I was feeling good about the MRI on Monday. So far, we had not seen any signs of tumor growth and Jay appeared to being doing great. About two weeks ago, I began to notice a twitch on the left side of his mouth. At the beginning of this week, it appeared to be getting worse so I called St. Jude just to run it by them. Dr. G seems to think that it may be mild seizure activity and that he is building up to a big one. Jay is at a high risk for seizures due to where the tumors are located and because he has a history of seizures. As a precaution, we started Keppra (seizure drug) on Tuesday and will probably see the Neurologist while we are in Memphis next week. Of course, this is very discouraging and now I am scared to death. Many scenarios are running through my mind and of course all the “what ifs”. I guess you could say that Jason and I are “preparing for the worse, but hoping for the best”. We have already began researching other treatment options just in case we need a plan B(or more like G!). I always feel like we have to have something to resort to if and when St. Jude decides that they can no longer help us. This is probably one of my biggest fears and I just thank God they have stuck by us this far.

I don’t mean to sound so pessimistic, but one thing I have learned on this journey is to always be on guard. We have been burned way too many times and we can’t just walk around with our heads in the clouds. My prayer all week has been, “Lord, we need your wisdom. Jay’s treatment team needs your wisdom. And Lord, I need your strength.” Jason and I are still trusting and believing that God is in control and no matter what the MRI shows, He can still heal Jay here on earth. I know that my God deals with the impossibilities and nothing is too hard for Him. Jay is a living testimony of what God can do. He is already a miracle.

“Is anything too hard for me ?”(Jer 32:27)

Tomorrow we are heading to Tennessee. First, we are going to Pigeon Forge for a night to see all the Christmas lights and then Sunday we are going to Nashville to spend some time at Angel Heart Farm(Can’t wait to see you Ms. Tracy!). Sunday night we will travel to Memphis and Jay’s MRI is Monday morning. I will post results as soon as I know something.

Your prayers continue to carry us and your encouraging words keep us looking up. Thank you for your faithfulness.

Love,
Cindy

Friday, December 16, 2005 2:46 PM CST

I know that I have been terribly slack with updating and I do apologize. Just always remember that with us, “no news is probably good news”! I guess you could also say that being home on treatment has given us an opportunity to “pretend” that we are just a normal family doing normal things....Wednesday night supper, carting Kaitlyn around to all her extra-curricular activities, spending time with our friends, cooking dinner, lots of shopping, decorating for the holidays, hosting Christmas parties, and I have even been working a little bit to earn some extra money for all the shopping I have been doing! With all that has come less computer time for me, and less updating. In a way, not updating just was just part of the pretending:)

So, like my dear friend Julie(Easton’s Mom) would say, here are the highlights:

Jay has been doing extremely well. He has truly enjoyed being home and his little personally is just blossoming. Before diagnosis, Jay was a very out-going little guy. He was a people person and enjoyed being the center of attention. The instability that he has experienced over the past two years had caused him to become very shy and withdrawn. Since our last visit to Memphis, I have been seeing glimpses of my old Jay. While in public, I have witnessed him striking up conversations with strangers, and at church he has become the little social bug. The past few Sundays he has handpicked who he is going to sit with and it hasn’t been Mommy and Daddy! This is just further proof of what being home together has family will do. What a blessing!

Up until this past week, I was feeling good about the MRI on Monday. So far, we had not seen any signs of tumor growth and Jay appeared to being doing great. About two weeks ago, I began to notice a twitch on the left side of his mouth. At the beginning of this week, it appeared to be getting worse so I called St. Jude just to run it by them. Dr. G seems to think that it may be mild seizure activity and that he is building up to a big one. Jay is at a high risk for seizures due to where the tumors are located and because he has a history of seizures. As a precaution, we started Keppra (seizure drug) on Tuesday and will probably see the Neurologist while we are in Memphis next week. Of course, this is very discouraging and now I am scared to death. Many scenarios are running through my mind and of course all the “what ifs”. I guess you could say that Jason and I are “preparing for the worse, but hoping for the best”. We have already began researching other treatment options just in case we need a plan B(or C, D, E...). I always feel like we have to have something to resort to if and when St. Jude decides that they can no longer help us. This is probably one of my biggest fears and I just thank God they have stuck by us this far.

I don’t mean to sound so pessimistic, but one thing I have learned on this journey is to always be on guard. We have been burned way too many times and we can’t just walk around with our heads in the clouds. My prayer all week has been, “Lord, we need your wisdom. Jay’s treatment team needs your wisdom. And Lord, I need your strength.” Jason and I are still trusting and believing that God is in control and no matter what the MRI shows, He can still heal Jay here on earth. I know that my God deals with the impossibilities and nothing is too hard for Him. Jay is a living testimony of what God can do. He is already a miracle.

“Is anything too hard for me ?”(Jer 32:27)

Tomorrow we are heading to Tennessee. First, we are going to Pigeon Forge for a night to see all the Christmas lights and then Sunday we are going to Nashville to spend some time at Angel Heart Farm(Can’t wait to see you Ms. Tracy!). Sunday night we will travel to Memphis and Jay’s MRI is Monday morning. I will post results as soon as I know something.

Your prayers continue to carry us and your encouraging words keep us looking up. Thank you for your faithfulness.

Love,
Cindy

Tuesday, November 22, 2005 8:11 PM CST

Short and sweet....

****NEW PHOTOS IN ALBUM****

Jay is doing well and is very excited about the holidays! He has recovered from his recent stay in the hospital and just continues to amaze us all! Every time we go outside he reminds me that he must stay warm so he won’t be sick for Thanksgiving! Wonder where he gets that idea from?!? We are very thankful to be able to travel this Thanksgiving to visit with both sides of the family. Over the next four days, we are traveling to Brunswick, Savannah, Albany and then back to Gray! Lots of fun and lots of turkey!

The 2006 "Cowboy Up! for Kids” Calendars are in! Jay is on the front cover(with his cowgirl Ainsley) and he is also the June model. The proceeds will go to Angel Heart Farm, Victory Junction(victoryjunction.org), Gabe’s My Heart(gabesmyheart.com), and to St. Jude. If you would like to purchase one(or more) please email me! There is an email link at the bottom of the page.

Also, we have about 50 “Jay’s Hope” wristbands left and would like to sell them by the first of the year so we can reorder more. If you would like to order some please email me!

Our next trip to Memphis will be on December 19th for an MRI. Please continue to pray that this new chemo is working and for Jay’s complete healing here on earth! Jay is already a miracle and we pray that he continues to be!

This was in an email that I received recently. I am sure we can all relate in some way!

I am thankful for...
the mess to clean up after a party because it means I have been surrounded by friends.
the taxes I pay because it means that I'm employed.
the clothes that fit a little too snug because it means I have enough to eat.
a lawn that needs mowing, windows that need cleaning and gutters that need fixing because it means that I have a home.
all the complaining I hear about our Government because it means we have freedom of speech.
my huge heating bill because it means I am warm.
the alarm that goes off in the early morning hours because it means that I am alive.

Hope you all have a very safe and happy Thanksgiving!

Thankful in ALL things,
Cindy

Sunday, November 6, 2005 8:01 PM CST

Just wanted to give everyone a quick update on Jay. The day after we returned from Memphis, Jay was admitted to the Children’s Hospital here in Macon for a line infection. After three days, we were sent home on home health. This past Tuesday Jay started running fever and was very puny. Cultures revealed that yeast was growing in his line and we were admitted to the hospital again Thursday night. Jay’ line was pulled Friday morning and Anti-Fungal drugs were started through an IV.

Today we discovered that Jay’s Hemoglobin is low (7.4) and he may nor may not need a blood transfusion in the morning. His Bilirubin is also elevated, so we have cut back the dose of the Anti-Fungal to see if that may be the culprit. Tomorrow our doctors here will consult with St. Jude on whether or not to switch to a less toxic drug, maybe something oral at home. We will have labs done again in the morning and will hopefully have a new plan sometime tomorrow.

So far, the cultures from his arm have been negative(thank the Lord), so removing the source of the infection(Jay’ line) may have tended to it. Jay will need to continue on some type of Anti-Fungal as a preventative.

Please pray that this will be resolved quickly so we can get Jay home and pray for wisdom for his medical team. I will update again soon.

Love,
Cindy

*We were able to sneak away for the Cowboy Ball in Nashville on Friday night. I would like to say a huge THANK YOU to our wonderful pediatricians(Dr. V and Dr. Molly) for making it happen! I have lots to share about the awesome time we all had but will have to do that at another time.

Hi Ho, Hi Ho, it’s off to bed I go.....

Tuesday, October 25, 2005 7:24 PM CDT

Jay's tumors remain stable. No new growth. Our understanding is that the inhibitors take longer to work than traditional chemo and that stable this time is not a bad report. We will continue leaning on God to carry us through this and will report more very shortly. Thank you for your prayers and support. We love you all!

In His Grip, Jason

Friday, October 21, 2005 10:27 AM CDT

Just a quick reminder:

Jay and I leave for Memphis this Sunday. His MRI is Tuesday morning and we should have results late Tuesday afternoon. We will fly back home Tuesday night. Jason will post the results as soon as we know something.

As always and faithfully, please pray...

My battle verse for this week:

"Be strong, courageous, and firm; fear not nor be in terror before them, for it is the Lord your God who goes with you; He will not fail you or forsake you." (Deuteronomy 31:6)

Oh, God, deliver me from fear. Help me to be courageous and to have holy boldness. Help me to "fear not" but to go in and possess all you desire for me to have. Help me know how much you love me, because your perfect love will cast out all fear.

In Jesus' name,
Amen

Sunday, October 9, 2005 5:08 PM CDT

*Prayers needed for our friend Ryan(oh/ryan)who has an MRI this week and for Victoria(ga/victorianewsome)who has also relapsed with Medulloblastoma and is currently not doing well.

I know, I know...an update is long overdo! I really don’t have an excuse except that our lives have been pretty boring and there is just not a whole lot to report. But, that’s a good thing right?!? Jay is doing very well, he is feeling great, full of energy most of the time, and just enjoying being somewhat normal! Every morning he wakes up wanting the agenda, “Mommy, where are we going, who are we going to see, and can somebody come over?” He is always wanting to be on the go and always looking forward to each day’s adventure...and believe me, with my three, it’s always an adventure!

Jay is also doing well with taking his new “Experimental Drug”. Once a day, he takes a capsule by mouth, with a spoonful of orange jello...and it MUST be orange! No other color will do! So far, the only side effects we have seen is a mild upset stomach and an overactive bladder. Add that to his thinning hair and you might mistaken him for my grandfather! I told Jason the other day that this is just too easy. No IV’s, no syringes of nasty tasting medicine, his counts are good, he feels great, we can do this at home, and it just might shrink tumors!?! So, what’s the catch? Every time I give it to him, I have flash backs to our college infirmary and the little pink pills. No matter what you went in for, they always sent you home with a ziplock full of little pink pills. I think the sales pitch was, “Headache, stomach bug, the flu, a broken leg? Whatever your aliment, take three a day and you will be good as new in less than a week!” And ya know, I can’t remember a time that it didn’t help! So, if Saha works(which by the way, sounds like the name of a tropical island somewhere), we couldn’t ask for an easier way. We just keep praying and hoping that maybe, just maybe, this is the ticket. We will return on October 23rd for labs and a MRI on the 25th(Tonya, I guess you now can keep your crown!).

I am currently reading “A Heart Like Jesus” by Max Lucado. The theme of the book is, “God loves you just way you are, but he refuses to leave you that way. He wants you to have a heart like Jesus.” He tells the reader to think about Jesus becoming you for one day. Jesus wakes up in your bed, walks in shoes, lives in your house, assumes your schedule, your boss becomes his boss, your mother his mother, your pains his pains. With one exception, nothing about your life changes. Your health doesn’t change. Your circumstances don’t change. Your schedule isn’t altered. Your problems aren’t solved. What if, for one day and one night, Jesus lives your life with his heart? What would you be like? How would you feel? What alterations would this have on your stress level? Your mood swings? Your temper? Would you sleep better? See sunsets differently? Death differently? Taxes differently? Any chance you would need fewer aspirin or sedatives? How about your reaction to traffic delays? Would you still dread what you are dreading? Better yet, would you still do what you are doing?

Max goes on to name the attributes of Jesus’ heart. Pure, purposeful, spiritual, pleasant and the one I struggle with the most, PEACEFUL. Jesus’ heart was peaceful. The disciples fretted over the need to feed thousands, but not Jesus. He thanked God for the problem. The disciples shouted fear in the storm, but not Jesus. He slept through it. Peter drew his sword to fight the soldiers, but not Jesus. He lifted his hand to heal. His heart was at peace. When his disciples abandoned him, did he pout and go home? When Peter denied him, did he lose his temper? When the soldiers spit in his face, did he breathe fire in theirs? Far from it! He was at peace. He forgave them. He refused to be guided by vengeance, fear, or worry. He refused to be guided by anything other than his higher call. And as children of God, we are called to do the same. God wants us to “think and act like Christ”(Phil. 2:5). But, our hearts seem so far from his. He is pure; we are greedy. He is peaceful; we are hassled. He is purposeful; we are distracted. He is pleasant; we are cranky. He is spiritual; we are earthbound. So, how could we ever hope to have the heart of Jesus? Ready for the surprise? We already do. If you are in Christ, you already have the of heart of Christ. If you have given your life to Jesus, Jesus has given himself to you. He has made your heart his home because “Christ lives in me”(Gal 2:20).

Lately, I have really struggled with not being able to find the peace that I once knew. I have prayed about it, talked about it, fretted about it and I have even felt guilty about it. I have looked up and said, “what is wrong with me? You say not to worry, but I do. You say to trust, but I will admit that I don’t all the time. You say to be at peace, but I am far from it. So what am I doing wrong? “ Through the chapters of this book, God has shown me how I can regain my peace as long as I am ready to accept his offer. He has shown me that I must be willing to stop focusing on my fear and heartache and “fix my eyes on Jesus”(Heb. 12:2). Perhaps in seeing him, I will be able to see what I can become. Pure, Spiritual, Purposeful, Pleasant, and most of all Peaceful. The same one who saved my soul, longs to remake my heart...as long as I am willing.

“Our faces, then are not covered. We all show the Lord’s glory, and we are being changed to be like him. This change in us brings ever greater glory, which comes from the Lord, who is the spirit”(2Cor 3:18).

Striving to have the heart of Jesus,
Cindy

Sunday, October 2, 2005 7:26 PM CDT

We are home! There are new photos for you to see, and I promise to update in a few days.

Love,
Cindy

Monday, September 26, 2005 7:23 AM CDT

TODAY, SEPTEMBER 26TH, PLEASE EAT A CHILI’S FOR LUNCH OR DINNER IN HONOR OF ALL THE ST JUDE KIDS!!! ALL THE PROCEEDS GO TO ST JUDE! THANK YOU!

Well, plans have changed once again and the boys and I will be heading back to Memphis tomorrow thru Friday. Openings are limited in the study we are trying to get Jay in and need to sign consent by this Wednesday. Tomorrow we will have all the pre-testing stuff, and then we will start the oral chemo(Saha) on Thursday. The protocol calls for 24 hours of lab checks after the first dose of Saha, so we will hopefully be able to come home on Friday.

My prayer from the beginning of this journey is for God to guide our medical team and to give them the wisdom for what is best for Jay. Even though we are not ready to go back so soon, I can only think that God has his reasons. In two years, I can honestly say that He has never misguided us.

Let us cast our worries on the Lord; let us leave ourselves in His hands, because all things work together for good to those who love God (Romans 8:28). Let us pray; and, even if we don't get immediately what we ask for, we can be sure that we'll receive the strength from the Lord. He has not despised nor abhorred the affliction of the afflicted; nor has He hidden His face from him; but when he cried to Him, He heard (Psalm 22:24).

Thank you Jesus!

*Please pray for our friend Bella(fl/bella)who has scans this week! Thank you!

Saturday, September 24, 2005 8:28 PM CDT

OUR BABY GIRL IS 7 TODAY!!! HAPPY BIRTHDAY KAITLYN!!!!! WE LOVE YOU VERY MUCH!!! YOU ARE SUCH A WONDERFUL DAUGHTER AND SISTER!!!

LOVE,
DADDY, MOMMY, JAY, AND TANNER

Thursday, September 22, 2005 4:59 PM CDT

Is the cup half full or half empty? The good news is that the tumors are stable and have not spread or grown. The not so good news is that the tumors are not shrinking. Dr. G feels that we need to switch chemos again. Jay will be home for 3 weeks. He will then start an oral chemo at home. We don't know the drug yet because we don't know what studies will be open at the time. Dr. G said as long as we continue to see some good results and are willing to keep fighting, that he is willing to keep fighting with us. At least this round we will be together at home. We will update with more details soon.

Thank you all for continuing to lift up Jay and the rest of our family through these difficult times!

In His Grip, Jason

Tuesday, September 20, 2005 11:10 AM CDT

Please join us in praying BOLDLY for Jay's MRI on Thursday, Sept. 22nd. We continue to believe that with God all things are possible...

The Lord is Great and Mighty.

He is able to do all things and all things are subject to Him. With Him all things are possible and nothing is impossible. He is able to save to the uttermost and no one is so far gone that the Lord cannot save him. His Ways are past finding out, yet His Spirit is able to reveal all things to us. There is no truth so deep that He cannot teach it to us, for He is able to teach us all things by His Spirit by simply bringing it to our remembrance. There is no pit so deep that He cannot lift us out of it. There is no problem so difficult that He cannot solve it. Put your whole trust in the Lord, for He is able to protect you and defend you.

The Lord is Great and Mighty!

Amen

*Our sweet friend Louie(ky/louie)also has his MRI on Thursday. We ask that you also remember him and his family in your prayers!

Wednesday, September 14, 2005 10:34 AM CDT

Just a quick note to let you know that the boys and I were able to come home last night. We will return to Memphis on Tuesday the 20th for chemo and a MRI on the 22nd.

I will update again soon...

-Cindy

Tuesday, September 6, 2005 12:52 AM CDT

**New Photos**

Ya still here, Lord?

“And those who know Your name will put their trust in You; for You, LORD, have not forsaken those who seek You.” (Psalm 9:10)

I have to admit, the past month has been physically, mentally, emotionally, and spiritually exhausting. There have many times during this new phase of our journey that I have felt abandoned, alone and forgotten. I have looked up and screamed, “Hello!?! Where are you? Where did you go? We need you down here!” My insecurities, doubts and fears sometimes tend to overpower me and have caused me to question God. My view of Him has been clouded and I have been tempted to give into my despair. And then, God reached out to me, and reminded me of His promises, His love and His faithfulness. He reminded me that when I am most vulnerable, that is when I have to have the most trust. When I feel that I can’t go on, that’s when I need to look ahead. When I think I can do no more, that’s when I have to do the most: remember who my gracious God is and that He is still here, no matter what. A sense of peace replaced my insecurities, and this walk I never walk alone isn’t so scary after all.

“Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness, or danger, sword?...No, in all things we are more than conquerors through him who loves us. For I am convinced that neither death, nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” (Romans 8:35, 37-39)

TRUST. Trust Me with all your heart, and lean not on your own understanding(Proverbs 3:5). Even though there are many, many questions without clear answers, Jason and I have been called to trust. Even through our suffering, we must remember that God loves us, He loves Jay, and He has not, and will never forsake us. Nothing, not even cancer can change that. Knowing that renews my strength, my courage, and gives me peace. “We are more than conquerors through Him who loves us...”

We have had a wonderful time at home together as a family. Sadly, our time here will be cut short due to the hospital needing us back tomorrow. It’s a long, complicated story that I will not go into here, but just remember what I have said a million times before, things tend to change when you are living on St. Jude time! My parents are flying with the boys and I back to Memphis, and we will be moving back into the Ronald McDonald House(same room, #27). Jason will drive my car up Friday, and will fly back to GA on Sunday. Jay is scheduled for the first dose of round two on Thursday morning, and will have daily labs for seven days. We will be in Memphis for about three weeks, and hope to be home on the 23rd.

Jay is doing okay. He doesn’t have a lot of energy, and has been dealing with nausea, vomiting and diarrhea from the chemo. He is very clingy to Jason and I, and is very upset about going back to Memphis. Thankfully, he will have his Pappa and Nanna to distract him for a few days, and then Jason will be there for the weekend. Kaitlyn is also having a tough time knowing that we are leaving again for a few weeks. Since our treatment schedule continues to change, the kids don’t know what or who to believe. They are both so confused, and who can blame them. Hopefully, this will be it for the extended stays...

To end on a positive note, I want to share with you a funny story. On the way home last week, the boys and I pulled through a drive-through for lunch. My Suburban was packed to the roof with suitcases, baskets of toys, and all the STUFF we had collected over the past few weeks. I was lookin' real purrty with my sweaty hair pulled back(I had just pumped hard-to-come-by gas in 100 degree weather!), no make-up, and dark circles under my eyes. When I pulled up to the window, I noticed that several employees kept coming to the window looking at us. At the time, I really didn’t think to much about it until they asked me to pull around to the front door. A few minutes later, two employees came out with our order and asked, “are you guys from New Orleans?” I began to laugh, and responded, “No, we are refugees from St. Jude.”

As always, thank you for your continued support and prayers! We will update again soon!

Love,
Cindy

Contact info:
Ronald McDonald House
Jay Gaskins Room #27
535 Alabama Ave
Memphis, TN 38105
901-312-7427

Thursday, September 1, 2005 9:41 AM CDT

Just a quick update to let you all know that the boys and I arrived home safely late last night. We will be home through Sept. 11th and will have to return for approximately three weeks. During those three weeks Jay will have 3 doses of chemo, a week of lab work, a MRI on the 22nd, and minor oral surgery. We discovered yesterday that all four of Jay’s back molars have been damaged by the radiation and have cavities. They need to be cleaned out, filled and capped. His front teeth may need some work as well. Hopefully, by October we will be able to be home and only fly to Memphis once a week.

We are so thankful to be home for a much needed break. I will updated again in the next few days.

Keep praying!

Love,
Cindy

Monday, August 29, 2005 8:06 PM CDT

St. Jude loves to keep us guessing. Cindy is on her way home now and should make it tonight by 11:00 PM. After further investigation, the protocol called for a small break in chemo after the third dose. Cindy, Jay and Tanner will be home until Monday the 12th. Jay will return for chemo and have his MRI on approx Thursday the 22nd. I am sure that this may all change by in the AM, but we'll keep everyone posted. We are thrilled to be back together as a family...Jason

Run with perserverance the path laid before you. I read this on a quilt in the lobby at Covenant Academy, waiting to get Kaitlyn on Friday. I kept repeating it over and over in my head. I wanted to stop thinking about it, but I could not. God was talking to me. I was a little uncomfortable that God was nudging me along. He was telling me to quit feeling sorry for myself and stay focused on Jay. I was put here right now to care for God's child and it is a great responsibility to care for God's instrument. My whining would only hamper His work. What a blessing that through 2 years of fighting cancer Jay has touched the lives of so many.

This weekend was relatively quiet. Jay had to get fluids for dehydration from Friday AM through Saturday AM. He came off of the fluids Saturday and was fine. The boys and I rested while the girls went to their retail therapy at the mall. Jay was once again very sad to see us leave, but seemed to get over us leaving slightly faster.

Cindy finally got a rough schedule for the next 3-4 weeks. Jay will get chemo this Tuesday and next Tuesday. He can then come home next Tuesday night. He will begin flying up to Memphis every Tuesday for chemo. After six doses (2 rounds) he will have his MRI - approx third or fourth week of September. As long as the chemo is working, he can do this for at least 6 months, possibly a year. Kaitlyn and I cannot wait for them to get home - this house is too quiet.

Thanks for loving us and praying for us...Jason

Monday, August 22, 2005 8:52 PM CDT

***Cindy's contact info - Ronald McDonald House Jay Gaskins Room #27, 535 Alabama Ave Memphis, Tenn 38105 901-312-7427

Sorry for the long delay. Cindy's laptop crashed and she could not post her latest journal entry. You all are stuck listening to my rants. This week was pretty uneventful which is good. Jay handled the chemo very well and was allowed to leave several hours early. For the rest of the week Jay did therapies. This gave him something to do, but was an opportunity for Tanner to live up to his nickname - "Tornado." Cindy's parents were there to help her this past week until Friday AM. Friday PM Kaitlyn and I arrived. We had a good time together as a family, but as always it was very difficult to leave. Jay was very upset and could not understand why we had to go home. He has continued to be upset even tonight, wanting to know when we are coming back. This is what I struggle with the most. To look into the eyes of my balling 4 year-old and tell him I have to leave to go back to work, is as painful a thing as I have had to do in my 31 years.

I am praying that this wicked disease does not turn us into bitter people. I hope these feelings are just the "normal" gamut of emotions. I know that God loves Jay - he created him. What we struggle with is why God allows a 4 year-old to suffer. Jay has changed the lives of thousands of people. He has been an awesome instrument in the good fight. How can a third relapse possibly be a good thing? Is it going to help more people?

Cindy and I have more questions than answers this go around. Both of us are spiritually spent. God is still in control and we trust Him. This does not mean we understand or are happy with the circumstances. Please pray for us. I don't know that we have asked for many specific prayers for us, but we need prayers more than ever to continue the fight.

Jay will have another treatment in the AM. He will continue with Tuesday as his chemo day for as long as he can handle it. Hopefully, he will have another MRI in the coming weeks to give us a progress report. Cindy and Jay should come home the week after Labor Day - if all goes well. Please remember Jay in your prayers tomorrow.

Thank you all for continued prayers and support.

In His Grip,Jason

Sunday, August 14, 2005 4:24 PM CDT

8/17/05 Quick Update - Jay handled the new chemo very well. He did so well that he was allowed to leave several hours early. The rest of the week will be filled with therapies and playtime at the Ronald McDonald House. We will be updating with more details shortly. Thank you for your continued support and prayers...Jason

Merriam-Webster Online Dictionary defines cancer as something evil or malignant that spreads destructively. I believe evil and destructive are the key words. Cancer weasels its way into a happy family and causes destruction that is immeasurable. I'm afraid that the aftershocks will loom for years. The evil havoc that is wreaked on these families can only be overcome and defeated through the grace of God.

Standing at the top of the driveway, I searched for answers for Kaitlyn. Why are mommy and the boys moving to Memphis again? I don't know who was more confused or upset by all this. In Kaitlyn's mind she is asking why? - while I am asking how?. How could this nightmare be starting all over again? How could God allow this to happen again? What have we done to deserve this? On this side of eternity there will be no answers. We have to trust God. If we really believe Him and trust Him, we have to allow His will to unfold. As painful as this is, as bitter a pill as it is to swallow, God's will must be done. Watching a loved one suffer is the most gut wrenching thing we could possibly do on this planet. In the past few days my heart has felt that like it was going to pound out of my chest. I see a vibrant, happy little boy playing with his brother and sister. He appears healthy as a horse. In my mind I'm looking at an MRI with four tumors - then watching Jay run around with boundless energy. I cannot reconcile this in my mind. Cindy and I are going to surround Jay with love and surrender him to God's will. That does not mean that we are giving up. We are going to fight this evil, destructive cancer until the bitter end. We are already lining up plans to go to Mexico for alternative treatments if this study drug does not work.

Please join us in prayer as we jump back into this battle. We feel like we are in round 10 of a heavyweight boxing match - aching, bloodied, weary, but never conceding. Thank you for all the prayers already lifted up on Jay's behalf.

Still believing, still hoping...Jason

Thursday, August 11, 2005 6:22 PM CDT

****NEW PHOTOS IN ALBUM!****

UPDATE 8/12**Thank you for the overwhelming response to our need for a double stroller. We are just amazed at the wonderful support we have! One of our dear St. Jude families, The Horrocks(caringbridge.org/fl/bella), are going to have one waiting for us at the RMH. After we are done with it, we will leave it for other families to use. Thank you Mark and Melissa! You guys are awesome!**

THE GAME PLAN:

Sunday morning my parents are driving the boys and I back up to Memphis. Jay has pre-testing for a new protocol all day Monday, and will begin Chemo on Tuesday. This is a Phase 1 study called Temkid(Temsirolimus). It is a brand new chemo drug that has been effective against Medulloblastoma tumors in rats. Jay will be one of twenty-five children(Guinea Pigs) in this study. He will receive a once a week infusion and we will have to stay in Memphis(at the Ronald McDonald House) for a month so he can be closely monitored due to the side effects. After a month of treatment, a follow-up MRI will be done and we should be able to come home. If the chemo is working, we will continue with the protocol and Jay and I will return once a week for treatment.

Overall, Jay is doing exceptionally well. He is playful, energetic, has a good appetite and appears to be feeling great! It is hard to believe that he has four tumors growing in his little head. God is definitely holding him in the palm of His hand and sustaining him. Jay continues to be our miracle. Please pray for Jay and our family as we prepare to be separated for a month. Jason and Kaitlyn will stay home for school and work and will visit us on the weekends.

One of our biggest prayer concerns(other than the obvious) is for Jay not to have a seizure. The largest of the four tumors is in the frontal lobe of his brain where he has experienced seizure activity before. If Jay was to have a seizure, he would be considered unstable and would not qualify for the protocol. Please join us in asking our loving, merciful Father for Jay to remain healthy and seizure free.

Thank you for all your support and prayers. We cherish you all!

Holding tightly to our faith, hope and courage...

Cindy

Tuesday, August 9, 2005 11:24 PM CDT

****Please join us at 8:15 PM tonight as we are going to pray jointly for Jay's healing...Jason

Unfortunately, we did not receive the news we had hoped for...Jay has four new tumors on his brain. We are still discussing treatment options with our doctor, and will hopefully have a game plan to report in a few days.

The good news is, our Heavenly Father is still on the throne! Jason and I refuse to give up and will continue to hold onto our hope. Please continue to pray for Jay. He needs your prayers more than ever.

I will update again soon with more details.

Keeping faith, hope, and courage...

Cindy

“Against all hope, in hope we believe”...(Romans 4:18)

Saturday, August 6, 2005 8:25 PM CDT

The Gaskins’ crew is heading out to Tennessee in the morning. Of course, we will be stopping off in Nashville for our Angel Heart Farm fix(can't wait to see you Tracy!). Our little model has yet another photo shoot. Jay has been selected as the Cowboy of the Ball for a huge fund raiser that will be held in November. He will be posing with the Cowgirl of the Ball, which ought to be very interesting since Jay is in the “girls are yucky” stage. We’ll see how it goes!

We have appointments at St. Jude all day Monday and the MRI is early Tuesday morning. We should have the results by Tuesday afternoon and we will be home Tuesday night. Jason and I have opted not to do the growth hormone testing since we are not comfortable with starting growth hormones at this time. After much discussion and lots of prayer, we feel that we have made the appropriate choice for Jay. Jay's little body needs a break and that’s what we are going to do for now...NOTHING!

We are in our new home! Will probably be unpacking boxes for the next century, but we are somewhat settled. The kids have adjusted well and would live at the pool if we would let them. Jay still has his central line and is not suppose to swim, so we are trying to limit our swimming time this summer. Hopefully, Jay will be line free next summer and he can swim as much as his little heart desires. Oh what a glorious day that will be! We can’t wait! Please see the bottom of this page for our new contact info. We also have a new email address.

Tonight while I was talking with Jay about our trip and his check-up at St. Jude, he said, “Mommy, I am going to tell Dr. Gajjar that I am going to grow up to be a BIG boy!” With God's grace and mercy, our boy is going to continue to show them all!

I will update with MRI results Tuesday afternoon. Thank you for your continued prayers!

Also, I encourage all of you to read Ryan’s page. He is also an amazing miracle! What a mighty God we serve! caringbridge.org/oh/ryan

Love,
Cindy

Saturday, July 30, 2005 7:04 AM CDT

I know, I know...I have been neglecting updating the website. Our summer activities and trying to pack for the move has been keeping us so busy that I really haven’t had the time. But, that’s a good thing right!?! Besides it being hotter than H-E-double-hockey-sticks down here in the good ole’ south, we have been having fun(mostly inside) and trying to enjoy these last few weeks before school starts back.

We are moving to our new house today! Am I ready?!? NO! Of course NOT! We have until the 15th to be completely out, and I am sure I will be cutting it pretty close. Moving is a lot like child birth...you somehow forget how painful it really is until you do it again. We have hired movers which will be a huge help, and our parents will be here to help with the children. Yesterday, a friend of mine commented on how calm I appeared to be the day before our big move. Well, I guess you could say we have weathered bigger storms!

Jay is continuing to do very well! We return to Memphis the week of Aug. 7th for a MRI and lots of growth hormone testing. Please remember Jay in your prayers!

We will be without internet service for about a week(gasp!), so I may not be able to update before we leave for St. Jude. I will be sure to update the MRI results as soon as we know something.

Also, continue to pray for our friend Ryan(caringbridge.org/oh/ryan). He was sent home 7 weeks ago with only 6-8 weeks to live. He is doing awesome, and they are repeating a MRI next week to see what is going on. Please join this precious family in prayer for Ryan’s miracle.

Thanks for checking in on us!

Love,
Cindy

Wednesday, July 6, 2005 3:23 PM CDT

Ever since we got back on our “horse kick”, we have been looking at land and homes with pasture and barns. “Hanging out at the barn” has become something we enjoy as a family, so we began dreaming that maybe one day we could have one in our own backyard. Not only do we need a place for Kaitlyn to keep her horse, but eventually, Jason and I would like to have several horses for all of us to ride. We were thinking that maybe in a year or so we would be at a place that we could sell our home and maybe buy or build somewhere. Anyway, long story short, we have found the perfect house in a brand new equestrian community. The builder is a friend/business associate of ours and has offered to buy our home from us(a huge blessing), and we have agreed to buy his home. We close at the end of the month and move in July 30th. We have already started junk cleaning and organizing, and Jason has made at least ten trips to the dump and to Goodwill. Yesterday, as we were riding through the Kroger parking lot, we had to distract the kids from looking over at the Goodwill bin due to their old stuff sitting out front! Whew! That was a close one! We have only lived in this house for two years, and I am just appalled(and a little embarrassed) at how much STUFF we have collected! I have even found several boxes from our old house that we never unpacked! Shame, shame....

The kids are excited but also a little skeptical about moving. Kaitlyn would move tomorrow if we could, but Jay continues to ask lots of questions. “Are we taking my bed with us? How ‘bout my toys? Daddy’s chair? The dogs? The cats? My gator?” My favorite question so far has been, “Can we move this house into the field next to the new house”? The anticipation and really not knowing what to expect is a little stressful for Jay, but I believe he will be fine once the move is over.

Medically speaking, Jay is doing great! He has been battling a little virus that we all have had, but other than that, he has been feeling pretty good. We are scheduled to go back to Memphis on August 8th-10th for a MRI and more hormone testing. Please join us in prayer as this date approaches. It will be here before we know it! Also, please pray for our sweet friend Catie. Catie is have surgery tomorrow(July 7th) to remove a suspicious spot on her brain. She was diagnosed two years ago(around the same time that Jay was diagnosed)with the same type of tumor that Jay had, and is suppose to finish treatment soon. Please stop by her webpage and let her family know that you are praying for them- caringbridge.org/ga/catie

Ryan and his family continue to need your prayer-caringbridge.org/oh/ryan

Thank you for checking in on us! Hope you are all enjoying your summer!

Love,
Cindy

Friday, June 17, 2005 7:39 AM CDT

****6/21/05 PLEASE PRAY FOR OUR FRIEND BELLA. SHE IS HAVING SURGERY TODAY TO REMOVE A SUSPICIOUS LYMPH NODE. (caringbridge.org/fl/bella)****

“God is good, all the time. All the time, God is good!”

You have heard it a zillions times, and you have probably said it a thousand times. In the pulpit, on greeting cards, in your daily devotionals, and in just about every caringbridge guest book, you have heard it or read it, and maybe even typed it... “God is Good!” I have to admit, during my “spiritual immaturity”, I was guilty of misusing the phrase a time or two. When I think back to the times I have either said it, or someone has said it to me, it was usually during a time of rejoicing over an answered prayer, an undeserved blessing, or even over a breathtaking life-event. My wedding day, the birth of three healthy children, financial stability, selling our first home in nine days, surviving the flood of ‘94, my baby brother walking away from a car accident without a scratch, our parents good health, and most recently, Jay being cancer free! Yes, God has been very good! So, what about the hardships, trials, unanswered prayers, and tragedies? What about the 46 children who are diagnosed with cancer every single day, and the 35 percent that will die? What if, God forbid, Jay’s scans were not clear? Would we be so quick to declare “God is good, all the time?”

Last week, the day before we arrived in Memphis, a “St. Jude legend” earned her angel wings. Emma Grace had been fighting cancer for almost three years(over half her little life), and although she had won her battle with Neroblastoma, she died from complications of a stem cell transplant. Also, right before leaving, I received a phone call from a desperate St. Jude mom who feels that ending her life would make it all go away. Her precious baby has been battling a brain tumor for over a year now and they just can’t catch a break. It has been nothing but bad news, after bad news, after more bad news. She is mentally, physically and spiritually spent, and just can’t take it anymore. Although she has assured me that she wouldn’t do it for the sake of her children, just the fact that she has gotten to this point saddens me. Then, Wednesday morning, hours before Jay’s MRI, our friend Ryan received devastating news. The tumor in his spine has grown considerable, and is even bigger then it was at diagnosis over a year ago. His family is heartbroken beyond words, and he is now home on hospice. These stories, and countless others, have caused me to question God. Not necessarily His goodness, but I have questioned His reasons. Over the past few months, I have literally lost count of the number of friends we have lost. As I think back to our Ronald McDonald and Target House days, I discover that the majority of our friends who began this journey with us have gone to be with Jesus. I just can’t help but to ask why? Why are so many children and their families suffering? Why so many unanswered prayers?

During my trip, as I walked the halls of St. Jude, memories of the past two years came flooding back. The good, the bad, and the down-right ugly. Jay’s journey has been a roller-coaster ride to say the least. Brain surgery, four months of Chemo, recurrent disease, seizures, 6 weeks of radiation, trach, G-tube, life-threatening allergic reaction to seizure medicine, remission for 7 months, relapsed with new tumor growth, given no hope for a cure, trial study, tumor is almost gone, tumor is completely gone, and after eight rounds of treatment we are done! WHEW! What a ride! In retrospect, sometimes I think, how in the world have we survived? One of the biggest lesson for me during this battle, was to always keep my guard up because you never knew what was going to happen. The good could turn ugly quickly. I learned(the hard way) that the only guarantee we had, was that God was on our side. He loves us, and He is in our corner. He is on the sidelines cheering us on, He is running beside us, He is carrying us when get weary, and He is waiting for us at the finish line. Romans 8:31 says, “If God is for us, who can be against us?” Max Lucado said it perfectly in his book In the Grip of Grace. “God is for you. Not “may be,” not “has been,” not “was,” not “would be,” but “God is!” He is for you. Today. At this hour. At this minute. As you read this sentence. No need to wait in line or come back tomorrow. He is with you. He could not be closer than he is at this second. He is for you.” God’s unchanging faithfulness, love, goodness, greatness and His promises, is the reason we have survived. Even when I have questions without answers(a whole list of them!), even when it can’t possibly get any worse, I know and I am assured that He is for certain.

A few days after Emma Grace’s funeral, Stanton’s(another angel in heaven) mom wrote in her journal that during a phone conversation with Emma Grace’s mom, they both had said “God is good.” She commented on how strange that must have sounded coming from two moms who have recently lost their children. She ended with, “I guess if there is one lesson to be learned, this would be the most important. God is good!” So, after an emotional week at St. Jude, Stanton and Emma Grace’s moms gave me a sense of peace. It was a reminder to me, that no matter what happens in life, and no matter what happens in our “cancer world”, God is good, all the time. All the time, God is good!

***************************************************************************

Okay, I know all of you have been waiting patiently for details. First of all, I want to say thank you for your prayers regarding all of Jay’s testing. His hearing continues to be within “normal limits” with slight hearing loss in his left ear. His speech and sounds have improved some and his heart is as healthy as it can be! The endocrine visit went a little better than I expected. After testing his thyroid, we discovered that it has been damaged by the radiation he received last year. A normal thyroid level is between .4 and 2.4. Jay’s thyroid level was a whopping 88.7! We knew that there was a good chance this could happen, and it could also be part of the reason Jay is not growing. The doctor is convinced that Jay most likely does have growth hormone issues, but we need to get his thyroid in check first. After a few months of thyroid medicine, we may actually see some growth! How awesome would that be?!? I am still not convinced on the whole growth hormone thing. I am hoping and praying that with the new medicine on board and with all the “voodoo” supplements Jay is taking, maybe we won’t need growth hormones. We’ll see!

On the way home, we had to stop off in Nashville for our horse fix! Tracy at Angel Heart Farms, graciously opened her barn doors to all five of us! Jason, Kaitlyn and Tanner met us up there to spend the day with our new friends. What an awesome place! We are going back in July for a photo shoot(another fund raiser for Angel Heart) and for some more horseplay! Can’t wait! Thank you Tracy for all you do!

It felt so good to unpack the suitcases and put them up where they belong! We will return in August(eight weeks!) for a MRI and possibly more hormone testing. Although I was nervous at first, I have found complete peace with Jay being off treatment. Like I have said before, we are so thankful for the healing we are witnessing in Jay’s life. God had big plans for our little guy, and I am so excited to be a part of it!

Also, I want to say thank you to GiGi(Jason’s mom) for holding down the fort for me while Jay and I were gone. She was a HUGE help to Jason and the kids enjoyed her being here. After one of my neighbors commented on “the-lady-in-her-bathing-suit-running-through-the-sprinkler-in-the-front-yard”, I knew that they must have had a great time together! To quote Kaitlyn, “Mommy doesn’t even do that!”

Please pray for Emma Grace’s family(caringbridge.org/ar/emmagrace), Ryan(caringbridge.org/oh/ryan), and for my friend who is struggling so much. Also, please pray for Bella(caringbridge.org/fl/bella) who is undergoing further testing for an enlarged lymph node. Pray for Catie(caringbridge.org/ga/catie) who is schedule for surgery in a few weeks.

Thank you for checking in on us! We love ya!

Love,
Cindy

Thursday, June 9, 2005 5:18 PM CDT

God continues to amaze us with His abundance of love, grace, mercy and healing. Jay's MRI is completely clear. He has some thyroid issues that need to be addressed after some further tests, but besides that is doing very well. I will update with more details later. Thank you for continued prayers!

In His Grip, Jason

Wednesday, June 1, 2005 12:42 AM CDT

***Update: Wednesday, June 8th***

First, I would like to ask all of you to please pray for our little friend Ryan. Ryan is having some back pain and is here for an MRI to see what is going on. Please pray for the doctors to be able to determine what is causing the pain, and that it is something simple... like, NOT TUMOR related! His webpage is caringbridge.org/oh/ryan.

Jay and I arrived in Memphis last night. For the first time, Jay and I are by ourselves. We are enjoyed some one-on-one time together, and Jay has told everyone that we are on a date! He is so funny!

Today, he has a hearing test, speech evaluation, Echo/EKG, and he will see the Endocrinologist this afternoon. Tomorrow morning is the MRI. Please join us in praying for all of the appointmets listed above, and for a clear MRI. I will post results as soon as I know something. Thank you!

Love,
Cindy
***************************************

Ride Em' Cowboy!

We had a wonderful trip to Tennessee! Despite three days of yucky Chemo, we were able to visit with several of our St. Jude families. Easton, Chandler and Elliot were staying at “The Grizzle” with us. Being able to spend time with old friends sure makes the trip more pleasant for all of us, especially Jay. We were also able to meet with our favorite Ped. Oncologist, Dr. G. Once again, our treatment plan has changed, but this time for the good! If Jay’s scans on June 9th(next week)are clear, we will stop treatment. This last round of chemo, God willing, could possible be Jay’s last. As long as we get a good report, we wouldn’t have to go back to Memphis until August! I still can’t believe it! At first, I was a little unsettled and nervous about stopping treatment. I even made sure that Dr. G was t-totally comfortable with this decision, and wasn’t stopping on our account. My prayer has always been that God would give Dr. G the wisdom to know when Jay has had enough. So now, all we can do is trust.

After three days in Memphis, we headed to Nashville for Jay’s photo shoot. Friday, we visited Angel Heart Farm, and had the pleasure and blessing of meeting Ms. Tracy. Tracy is the founder of Angel Heart, and she is just that, a true angel. Tracy is a 3x cancer survivor and has lost both of her parents to cancer. She is a former wardrobe artist for several of the country music stars, and gave up her fame and fortune to begin this ministry. Shortly after her second relapse with cancer, Tracy had a dream that she was teaching horseback riding lessons to baldheaded children. After lots of prayer and research, she eventually gave up her fame and fortune to create Angel Heart Farm. The past few years, Tracy has dedicated her life to creating a safe, peaceful place for children with life-threatening illnesses and their families. I encourage you to visit their website(angelheartfarm.org), and if you are ever in the Nashville area, you must stop by! It is truly a little piece of heaven!

The rodeo was a blast! We went “rodeo attire” shopping the day before at The Cowboy Store, and all of us purchased boots and hats. Wrangler, who is sponsoring the calendar, dressed Jay from head-to-toe in the most adorable outfit! He definitely looked the part! During the photo shoot, Jay hung out with the rodeo clown, fed the horses, met a few cowboys, and got to see all the cattle and buffalo. The photographer captured some amazing pictures of our little cowboy! The calendars will be available by November, so please plan on purchasing one! The proceeds will go towards Angel Heart Farm.

Back home in Georgia, we have signed Kaitlyn up for horseback riding lessons. Right after Jay was diagnosed, her pony Cocoa grew wings and flew to heaven. We had promised her that as soon as Jay was done with treatment, she could start riding again. Well, treatment has lasted a wee bit long than we had planned! Being out at Angel Heart Farm reminded Jason and I how much our girl loves horses! She would live in the barn with them if we’d let her! After much research, we have found the perfect instructor. I am so thankful to now have the time to invest in something Kaitlyn wants to do. She deserves it!

We have also signed Jay up for Hippotherapy at Heartbeats and Hoofbeats Stables. Hippotherapy is Physical Therapy done on a horse. It will help him with his balance, coordination, strength and gross motor skills. Although Jay has come a long way since surgery, he still continues to struggle in all of these areas. After almost two years of conventional PT, Jay was beginning to take on the attitude of “been there, done that”. Hopefully, this program will give Jay something to look forward to each week, and at the same time, we will continue to see progress.

In less than a week, we will be heading back to Memphis. Not only do we have a MRI, but we also have our first Endocrinologist visit. Due to all the chemo drugs, and especially the high doses of radiation Jay received last year, he will more than likely not grow without growth hormones. In the past year, Jay has grown very little in height, his feet have not grown, and his weight has been stuck at 32 lbs. The Endocrinologist will run lots of blood work and do lots of measuring to determine what Jay needs. During our last visit, I was asking Dr. G about his opinion on the growth hormones. He explained to me that Jay would receive daily shots(by mean-nurse-mommy), his arms and legs may grow longer than his torso due to the radiation to his spine, and there is a small possibility that it could cause tumor growth. After hearing how complicated this could be, I am opting to just keep him the size he is. All of it fightens me, to say the least. Please pray that Jason and I and the doctors make the right decision. I will let you know how the consult goes.

We leave next Tuesday, June 7th and will be home Saturday, June 11th. MRI is scheduled for Thursday morning, and we should have results later that afternoon. I will update as soon as I know something.

"In God I trust; I will not be afraid"(Psalm 56:11).

Lord, when trouble surrounds me, may I trust in You, rather than falling back on my fears.

Pray, pray, pray...

Also, pray for our little friend Jill Zulovich- Scans June 1st(caringbridge.com/mo/jillsjourney)

Catie-scans next Tuesday, the 7th. Catie had the same type of tumor Jay had. (caringbridge.org/ga/catie)

Love,
Cindy

Thursday, May 26, 2005 8:26 AM CDT

We are home from our exciting trip to Tennessee! We have so much to share, and I promise to update again in the next few days. This week has been crazy with unpacking, Kaitlyn’s graduation and end of the school year party, remolding our half-bath, and preparing to go to the lake this weekend for Memorial Day. One of my friends recently told me that we are the busiest people she knows. I don’t think busy would be the word for it...more like INSANE!

Check back soon for details from our whirlwind rodeo adventure, and for new pictures!

Happy Summer!

Love,
Cindy

Monday, May 16, 2005 10:29 AM CDT

The Fix-It Machine

One of Jay's favorite shows, hands down, is "Dora the Explorer." Dora and her sidekick, Boots the Monkey, have become very close friends of ours. The other day, we were watching Dora over lunch, and the show was about a “Fix-It” Machine. Boots was very sad about a un hoyo(a hole)in his favorite red boots. Dora tells him about a Super Duper Fix-It Machine that can fix it right up! Along the way to find this amazing gadget, Dora and Boots come across other friends who could use some magic from the Fix-It Machine: Tico’s car has a hole in it's tire, Benny has a hole in his boat, and the Grumpy Old Troll has a hole in his purple pants. Even Map has a hole that needs to be fixed! Dora tells everyone, “ivamonos!”(let’s go!)and to follow her! Once they arrive at the Fix-It Machine, Boots, Tico, Benny, and the Troll place their battered and torn belongs inside. With a quink, a ploink and a rickety-pop, the Super Duper Fix-It Machine fixes all the holes! Hurray! “Lo hicimos!” “We Did It!”

After the show, I was hooking Jay up to his medicine pump and he said, “Mommy, I need to go to the “Fix-It Machine.” Wondering where in the world he was going with this one, I asked him why. He responded by saying, “I need some fixin’.” As my heart sank, and my mind scrambled for what to say next, Kaitlyn chimed in, “Jay, God has already fixed you!”

I couldn’t of said it better myself.

******************************************************************************

Well, we barely made the cut for round eight of treatment. We are sliding in at 775 with a whole extra 25 points to boot! WhooHoo! Now, if Jay can just hold there, or preferably, jump a little higher, we will be good to go tomorrow. We are currently packing up the house(literally)and heading up to Memphis. We will be residing at “The Grizzle” until Thursday, and then spend a long weekend in Nashville. One our most dearest babysitters, Whitney, is going with me and the boys, and Jason and Kaitlyn will meet up with us Nashville. Jay is participating in the Wrangler Rodeo on Saturday, and will be posing with the cowboys and rodeo clowns for a 2006 calender. The calender is a fund raiser for Angel Heart Farm, a non-profit therapeutic program that uses equine-assisted therapy for children with chronic and life threatening illnesses. We will also have the opportunity to visit the farm and to ride the horses. Kaitlyn and Jay are so excited! You can visit the website at: angelheartfarm.org.

Please remember to pray for our two friends Easton and Elliot. They both have scans this week.

I would also like to ask you to pray for a little girl named Madelyn(caringbridge.org/tn/madelyn). She desperately needs a Bone Marrow Transplant, and they cannot find a match. Also, please consider registering with the Bone Marrow Register. St. Jude will register willing donors for free, and Martha Bowman(our church)is planning on having a bone marrow drive sometime in September. If you are not a St. Jude family and you don’t live in Macon, check with your local American Red Cross for more information on how you can register. Becoming a donor is a huge commitment, so please pray about your decision. Jason and I both are planning on registering at St. Jude.

Thanks for all your prayers!

Love,
Cindy

Saturday, May 14, 2005 7:36 PM CDT

All is well at the Gaskins' house. We have been busy with lots of friend's birthday parties, end of the school year activities, and enjoying being together as a family before we leave for Memphis on Monday.

We received a clear culture from Jay's line on Wednesday, so he will be done with the antibiotics tomorrow evening(just in time for chemo!). His counts were low(ANC 460)on Thursday, so we are hoping to see a jump by Monday before we leave(need to be at least 750). Please pray for Jay's counts to recovery quickly so we can stay on track with treatment.

Also, please pray for two of our friends who have scans next week at St. Jude. Easton(caringbridge.org/fl/easton) and Elliot(caringbridge.org/ga/elliot). Okay, so the truth comes out. Selfishly, I don't want to postpone our trip because I would miss out on spending time with my friends!

I have updated the album with a few recent pictures, and will give a more detailed update before we leave.

Thanks for checking in on us!

Love,
Cindy

Monday, May 9, 2005 7:57 PM CDT

****Please pray for a new local friend of ours, Derante Shy. Derante is a 14 month old little boy who was diagnosed with a brain tumor last month. He is currently in the PICU at the Children's Hospital and undergoing chemo. Please stop by his webpage and leave some words of encouragement for his family. caringbridge.org/ga/derante****

Jay is home and feeling well. We are set up with home health and will continue IV antibiotics through this week. Even though we are thankful to be home, the medication schedule is hectic and I am pooped. I promise to update again very soon.

For now, in honor of Mother's Day, I would like to share this cute letter to Santa. I figured many of you could relate!

Hope you had a Happy Mother's Day!

Dear Santa,

I've been a good mom this year. I've fed, cleaned, and cuddled my three children on demand, visited the doctor's office more than my doctor, sold sixty-two cases of candy bars to raise money to plant a shade tree on the school playground and figured out how to attach nine patches onto my daughter's girl scout sash with staples and a glue gun.

I was hoping you could spread my list out over several years, since I had to write this letter with my son's red crayon, on the back of a receipt in the laundry room between cycles, and who knows when I'll find anymore free time in the next 18 years.

Here are my Christmas wishes:

I'd like a pair of legs that don't ache after a day of chasing kids (in any color, except purple, which I already have) and arms that don't flap in the breeze, but are strong enough to carry a screaming toddler out of the toy aisle in the grocery store.

I'd also like a waist, since I lost mine somewhere in the seventh month of my last pregnancy.

If you're hauling big ticket items this year I'd like a car with fingerprint resistant windows and a radio that only plays adult music; a television that doesn't broadcast any programs containing talking animals; and a refrigerator with a secret compartment behind the crisper where I can hide to talk on the phone.

On the practical side, I could use a talking daughter doll that says, "Yes, Mommy" to boost my parental confidence, along with one potty-trained toddler, two kids who don't fight, and three pairs of jeans that will zip all the way up without the use of power tools.

I could also use a recording of Tibetan monks chanting, "Don't eat in the living room "and 'Take your hands off your brother,' because my voice seems to be just out of my children's hearing range and can only be heard by the dog.

And please don't forget the Playdoh Travel Pack, the hottest stocking stuffer this year for mothers of preschoolers. It comes in three fluorescent colors and is guaranteed to crumble on any carpet making the in-laws' house seem just like mine. If it's too late to find any of these products, I'd settle for enough time to brush my teeth and comb my hair in the same morning, or the luxury of eating food warmer than room temperature without it being served in a Styrofoam container.

If you don't mind I could also use a few Christmas miracle to brighten the holiday season. Would it be too much trouble to declare ketchup a vegetable? It will clear my conscience immensely.

Well, Santa, the buzzer on the dryer is ringing and my son saw my feet under the laundry room door. I think he wants his crayon back. Have a safe trip and remember to leave your wet boots by the chimney and come in and dry off by the fire so you don't catch cold. Help yourself to cookies on the table, but don't eat too many or leave crumbs on the carpet.

Yours Always...Mom.

Friday, May 6, 2005 8:25 AM CDT

NEW UPDATE:

Well, it looks like I will be spending Mother’s Day weekend in Room #312 of the Children’s Hospital! As my friend Julie would say, “good times, good times!”

Dr. Gajjar believes that Jay does have an infection in both lines, and we need to be admitted today for IV antibiotics. After 48 hours, we will culture again, and once we have a negative culture, Jay will receive an additional seven days of IV antibiotics. GASP! Yes, you heard me right. That would mean that we would be in the hospital for 9-10 days. So, our dear, sweet pediatrician is hooking us up with the new Pediatric Oncologist here in Macon, to see if we can have home health pick-up those seven days of IV. So, the tentative plan is to be in the hospital through the weekend, and hopefully(fingers and toes crossed) by Monday or Tuesday, come home for the remainder seven days.

Since I have my theory on where he got this infection in the first place, I will be going armed with lots of alcohol pads, sterile gloves and a “watch them like a hawk” attitude!

Keep praying!

****************************************

Okay, here’s the deal...

Wednesday morning, Jay woke-up puny, had no appetite, and was running a fever. We went to our pediatrician’s office hoping for an ear infection, maybe strep throat...you know, anything to rule out a possible line infection. Well, no such luck! Everything looked great except for his white blood cell count being sky high. So, off to the hospital we went for cultures. Arrg.

Yesterday, Jay was fever free, and by late afternoon, he had perked-up. The 14-hour culture was negative, but the 24-hour culture was positive for staph. Of course, our first response was to start IV antibiotics immediately, but after talking with the doctor, we decided to wait. Jay is no longer symptomatic, and this could very well be a repeat of last time. If you recall, our last stay in the hospital was due to a so-called line infection that ended up being a contaminate(in laymen terms, somebody screwed-up!). There just doesn’t seem to be a standard protocol at our hospital when it comes to dealing with Jay’s line. Everyone seems to do it “they’re way”, and not even close to the “St. Jude way”. Okay, so we aren’t at St. Jude, but this ain’t Burger King either! “Have it your way” is just not going to cut it! I guess I am going to have to conduct a “Jay Gaskins’ Line 101" session for all the hospital staff. Don’t get me wrong, I know it’s not their fault. The small population of Ped. Oncology kids have pic lines and ports...not Double-Lumen Hickman Lines. The name itself is intimidating.

This morning, we should get a better read on the cultures and I will be able to consult with my pediatrician and St. Jude.

Keep praying, and I will keep you updated!

Love,
Cindy

Thursday, May 5, 2005 7:29 PM CDT

Here we go again...

Jay has a staff infection in his line. I am waiting to hear from the on-call doctor now, but know that we will be going into the hospital tonight to start IV Antibiotics.

Please pray.

-Cindy

Sunday, April 24, 2005 9:53 PM CDT

*Sorry for the delay. We were without a computer for four days last week.

************************************************************

A Mouse Without A Hole

"You did not choose me, but I chose you and appointed you that you should go and bear fruit" (John 15:16).

It took at least three weeks for it to sink in. Just the word CANCER was surreal to me. My first thought was that someone had made a huge mistake. Cancer happened to older people, unhealthy people, other people...but not to my child. During the whirlwind weeks that followed Jay’s diagnosis, I was in shock, angry, and in complete denial. Never in my wildest dreams did I think something like this would happen to our family.

Based on the type of tumor and Jay’s age, we chose St. Jude Children’s Hospital for treatment. Jay and I(and the baby on the way) would have to move to Memphis for six months to a year. Separating our family, leaving our home, our friends, and our comfortable lifestyle was heart wrenching. I begged God to snatch us out of this fire we were about to walk through. Days before we were expected to move, I remember feeling so alone. There was a hole in my heart, an emptiness in my soul, and I grieved for the life I once knew. The future that had seemed to be so bright, was now darkened with uncertainty.

It had been weeks since Jay’s surgery, and we were anxious to get the ball rolling with treatment. After checking into a hotel, we were bused over to the hospital for a tour of the facility and to meet our new treatment team. Reality slapped me in the face and sucker punched me in the gut as we walked the halls of St. Jude. There were children of all ages, many with exposed bald, scarred heads, others were wearing do-rags or baseball caps. The waiting rooms were filled with sick children in red wagons, riding tricycles, pushing walkers, in wheelchairs and attached to IV poles. Parents, Grandparents and siblings occupied the chairs and benches while waiting for their child’s next appointment. Many of them appeared tired, tattered and broken. My first impulse was to grab-up my family and run through the nearest door. I shouted out to God in my head, “Oh, God I don’t want to be one of these people! We don’t belong here! I will do anything to be “normal” again!”

I am currently in the middle of reading “Everybody’s Normal Till You Get To Know Them” by John Ortberg. John tells a story about moving his family to a new city, and how is oldest daughter had a tough time adjusting to her new surroundings. She felt like an outsider. While sharing her feelings with her dad, she painted the perfect picture of vulnerability with one statement: “I feel like a little mouse that doesn’t have a hole.” John goes on to describe the mouse as “a little creature scampering about in the midst of danger it cannot control, desperately trying to find a safe place to be welcomed into”. For so long after Jay’s diagnosis, I felt lost, vulnerable, and disconnected. In the blink of an eye, the security that I once had in my so called “normal” life was gone. Similar to the mouse, I was desperately trying to find my place. My hole. In my old life, I had lost my sense of belonging, and in my new life, I felt like a foreigner. I had banished my own self to the island of misfits.

Last weekend at Camp Sunshine, I was reminded of how far we have come. Not only has Jay made great strides with his recovery, but I have also found my nitch. Twenty months ago, walking into a room of bald heads was intimidating. Now, in a place that use to frighten me, I am able to find solace and serenity. I share a common bond with these families, and we are webbed together through our children. I no longer see strangers. I see a network of friends. A family. Camp Sunshine was also a “safe place” for my children. Jay didn’t have to worry about curious questions about his hair or his scars, and he had no trouble with keeping up. Kaitlyn enjoyed playing with the other siblings, and was reminded that she is not the only one in the world with a sick brother or sister. At St. Jude, during our monthly support group meeting, and at Camp Sunshine, my kids discover that we are normal. Maybe not normal by society standards, but in our little world, we have found some normalcy. In the book “Everybody’s Normal Till You Get To Know Them”, the author sums it up by saying, “The yearning to attach and connect, to love and to be loved, is the fiercest longing of the soul. Our need for community with people and the God who made us is to the human spirit what food and air and water are to the human body”(John Ortberg). I thank God for fulfilling our longing for community with old friends and new friends alike. We have been surrounded and blessed beyond measure by people who love us and accept us for who we are. Yes, I have found my mouse hole, and we are normal again!

Just for fun, I have come up with a list of what “normal” looks like to us. I invite all my oncology friends to give their two-cents and add to the list. Email me or post in the guest book.

Normal is:

Kissable bald heads

Scars

Your child’s “buddy” is his central line.

Planning your evening around dressing changes and line flushes

Planning your day around medications and physical therapy.

Having a syringe, a Urine Analysis cup, medical tape and Emla creme in your purse at all times.

Diagnosing the tough medical cases on “House” before he can(great show on Tuesday nights!)

Losing count of the number of times Jay has been admitted to the hospital.

When your kid’s room has an oxygen tank, an IV pole, and "Hazardous Waste" is written on the side of his trash can.

Potty training your three year old for the second time.

Jay learning how to sit-up, crawl, and walk all over again.

Memorizing the consent forms for treatment and anaesthesia.

Running out of room while listing Jay’s “previous surgeries” and “Medications now taking” on a new patient form.

Being able to start, stop and reset an IV and feeding pump in your sleep.

Mastering pushing an IV pole with one hand, and pulling a wagon full of kids with the other.

When all the stuffed animals and baby dolls in your house have ports.

When your four year old can identify his Hickman Line, his Omya, and pronounce Medulloblastoma, but hasn’t mastered his ABC’s yet.

Before asking to go to the park, Kaitlyn wants to know if Jay's counts are high enough.

Being able to just look at Jay and know that his counts are low.

Trying to coordinate Jay’s clothes to match his blue surgical mask.

Having a baseball cap in every color and for every season.

Making balloons and turkeys out of surgical gloves and water guns with syringes.

Your kids refer to blood as ketchup and cool-aid.

Goldfish, kraft macaroni, and a milkshake is considered a nutritious breakfast.

Avoiding fast-food restaurants with playgrounds due to the germs.

Jay wearing gloves on his hands and socks with his sandals due to the Neuropathy from the chemo..and it’s in the 70's.

Your children having their very own bottle of Purel, and they use it without being told.

Being able to drive to Memphis blindfolded.

Your circle of friends include Jay’s nurses, doctors and people you have “met” through the caringbridge websites.

Explaining to your children why so many of their friends have gone to live with Jesus.

Being told that your child may never grow without growth hormones.

Being told that your child could be mentally retarded from all the treatment.

Rushing to the doctor’s office and fearing the worst for every little fever, headache or upset stomach.

Having a sick feeling in your stomach with every MRI.

Being told that there is no longer a cure for your child.

Having hope that they have it all wrong.

Witnessing a miracle.

Believing and trusting in God no matter what happens.

Not taking a single day, or a single moment for granted.

Feeling out of place in what use to be “normal” situations to me.

Feeling “at home” in the Ronald McDonald house and the Grizzle House.

Having a sense of belonging at St. Jude, family support group meetings and Camp Sunshine.

Most importantly, normal is finding the ultimate comfort, security and acceptance with the only one who cannot be shaken, who will never leave me or forsake me, and in whom I can trust completely. Like the lyrics of the familiar song we sing in church: I am a friend of God; He calls me friend.

“I have called you friends”(John 15:15)

************************************************************

*Jay is doing well, and has completely recovered from the pneumonia. Thank you for your prayers!

We are returning to Memphis tomorrow for three days of chemo. Friday and Saturday, we will be attending a tennis tournament in Nashville to support our new friends Gabe and Lou and the Chemo Duck Project. Jay is one of the poster children for the tournament, and we have also been asked to tell our story. Also, while we are there, we will be supporting a group of “St. Jude Heroes” who are running in a marathon to raise money for St. Jude. Jill Soost(our area coordinator)is running in honor of Jay and several other local St. Jude kids. The “St. Jude Heroes” program is a great way to support the hospital if you are a runner or athlete. You can find out more information by going to the St. Jude website(stjude.org).

Please pray for a little girl named Savannah(caringbridge.org/fl/savannah). Savannah has the same type of tumor Jay had and is not doing very well. She is having breathing difficulties and is in ICU on a vent. Her doctors are clueless as to what is going on. Please pray for guidance and wisdom for her medical team.

Also, one of my dear friends is being induced tonight. Please pray for Cory to have an uncomplicated, speedy labor and delivery, and for a healthy baby girl!

As always, thanks for checking in on us!

Love,
Cindy

Thursday, April 14, 2005 1:33 PM CDT

We are home!

First, I want to say thank you for all your prayers! I also want to say thank you to Natalie, Cory, Lisa, Leigh and my lifesaver Hannah(our God-sent babysitter)for helping us with Kaitlyn and Tanner while Jay was in the hospital. We couldn’t have done it without you! Unfortunately, life doesn’t stop when your child gets sick. Jason still has to work, Kaitlyn has to go to school, and Tanner needs to be taken care of. Every time our lives have been interrupted with Jay’s medical needs, all of our friends and family have provided peace in the midst of the storm. They have been perfect examples of Jesus’ second greatest command, “Love your neighbor as yourself”(Mark 12:31). We are forever grateful!

Jay is on the mend. He is still somewhat puny, but has started eating and drinking again. We will continue breathing treatments, CPT and lots of orange juice and bananas(need that Potassium!)at home. We have a follow-up with our Pediatrician tomorrow morning and a chest X-ray next week. Please continue to pray for Jay’s restored healthy.

Tomorrow, we are leaving to attend family weekend at Camp Sunshine. Camp Sunshine is for Georgia Pediatric Oncology patients and their families. We are all looking forward to getting away, spending some time together, and visiting with the other families. We are thankful that Jay is feeling good enough for us to go.

Our next trip to Memphis is just around the corner. We leave Monday, April 25th for Jay’s 7th round of treatment. My, how time flies!

Our friends Garrett(caringbridge.org/wi/garrettstarr1) and Ryan(caringbridge.org/oh/ryan) received good reports last week! Thank you for your prayers!

Also, a new little friend of ours, Sebastian(caringbridge.org/va/sebastian), received wonderful news this week! He has ATRT which is a very aggressive brain tumor with a poor prognosis. After 10 weeks of Chemo his MRI was clear! Please remember him in your prayers as he begins radiation treatments soon.

Thanks again for checking on us!

Love,
Cindy

*We still have plenty of Jay's Hope wristbands! See the top of this page for more information on how to purchase one! Thanks for your support!

Wednesday, April 13, 2005 11:31 AM CDT

Jay is still in the hospital. Yesterday, the Pulmonologist review Jay’s chest X-ray and told us that the infection has caused Atelectasis. Atlectasis is when the lung has collapsed in small areas and causes blockage. If left untreated, it could lead to further complications. So, we opted to stay another night in the hospital so a Respiratory Therapist could work with him. After several breathing treatments and CPT(Chest Percussion Therapy), Jay’s cough seems to be more productive. We will redo the X-ray either today (recommended by the Pulmonologist), or next week(recommended by our Pediatrician and by St. Jude). Do doctors ever agree?!?!?!

This morning, we also discovered that Jay’s Potassium is low. This is probably due to him not eating since last Friday, and explains the nausea and fatigue. We have started him back on IV fluids with added Potassium and will recheck levels later this afternoon. If all goes well and his Potassium is up, we will receive our walking papers this evening.

Thanks for all your prayers!

Love,
Cindy

Saturday, April 9, 2005 9:29 PM CDT

***TUESDAY MORNING***

Well, the so-called line infection has been ruled out. The doctor's seem to believe that it was only a contaminant. A relief, but very frustrating.

Yesterday, Jay had another chest X-ray which is still showing Pneumonia in his right lung. After all the antibiotics he has received, the conclusion is that it is possibly viral Pneumonia. A lung specialist has been called in to review the films and give his opinion.

Overall, Jay seems to be feeling a little better. However, he is not eating or drinking and is at risk for dehydration without the IV fluids. The plan is to stop the fluids this morning to see if we can encourage him to drink. If he drinks well and stays fever free today, we may be able to come home this afternoon.

Thank you for your prayers. I will update again soon!

Love,
Cindy
****************************************

***Monday Morning***

THANK GOD IT'S MONDAY! Having complications over the weekend is just not fun!

Today we will be able to speak with OUR Pediatrician and Dr. Gajjar. I have been pleased with the care we have received so far, but sometimes I feel like we are from the Planet of the Apes with doctors who are unfamiliar with Jay's case. It will be nice to have some "Jay Gaskins Veterans" on board.

Jay seems to be feeling a little better. His counts have dropped below 500 which makes treating him a little more tricky. Please pray for wisdom for our doctors and healing for Baby Jay!

I will update again soon!
Love,
Cindy

***************************************

***NEW UPDATE Sunday, April 10th***

This morning we found out that not only does Jay have Pneumonia, he also has an infection in his line(port in his chest). He is being admitted into the Children's Hospital today for more cultures and IV antibiotics.

Please pray!

I will update again soon!

-Cindy

**************************************

****PRAYER REQUEST***

Last night, Jay spiked a fever and was seen by the on-call pediatrician this morning. After examining him, the Doctor was very concerned that Jay was not moving air well through his lungs. An x-ray this evening showed Pneumonia in the bottom of his right lung. Jay received antibiotics through his line and will also do a round of Zithramax. We are trying to avoid admission to the hospital and will see the doctor again tomorrow after lunch. Please pray that there will be some improvement and that these antibiotics will do the trick.

I will keep you posted.

Thank you!

-Cindy

Wednesday, April 6, 2005 7:42 AM CDT

Please pray for two of our buddies who have scans this week-
Garrett(caringbridge.org/wi/garrettstarr1) and Ryan(caringbridge.org/oh/ryan).

We are home and trying to get back into our "normal" routine.

I will update again this weekend.

Love,
Cindy

Sunday, March 27, 2005 9:02 PM CST

***Thursday, March 31st***

With a thankful and joyful heart, I am pleased to report that Jay's scans are CLEAR!!! The tumor is TEETOTALLY GONE!

Thank you Jesus!

We will update more later!

Love,
Cindy

***Update Monday, March 28th***

Our little buddy Bret earned his angel wings this morning. Please pray for his precious family.

God placed this verse on my heart today:

"Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy."

A Promise of Jesus, John 16:22

This promise that Jesus made to His disciples shortly before His crucifixion reveals the ultimate hope of every believer: our grief does not last forever. No matter how great our sadness today, there is a joy ahead that cannot be denied.

Grieving for our friends,
Cindy

*****************************************************************

Remember Me

Two other men, both criminals, were also led out with him to be executed. When they came to the place called the Skull, there they crucified him, along with the criminals-one on his right, the other on his left. One of the criminals who hung there hurled insults at him: “Aren’t you the Christ? Save yourself and us!” But the other criminal rebuked him. “Don’t you fear God”, he said, “since you are under the same sentence? We are punished justly, for we are getting what our deeds deserve. But this man had done nothing wrong.”

Then he said, “Jesus, remember me when you come into your kingdom.’Jesus answered him, ‘I tell you the truth, today you will be with me in paradise.”

(Luke 23:32-33, 39-43)

As a Social Work major, I was required to take “Death and Dying” my senior year in college. Taught by Morticia Addams' twin sister, the class included tours of the hospital morgue, the local funeral home, the crematorium, and a cemetery. We learned in great detail, how an autopsy is performed, “the art” of embalming, choosing a casket, purchasing a burial plot, and most importantly, what they do with the “parts” that don’t combust during cremation. Yes, to say the least, I am scarred for life. To this day, I still cringe when I drive by a funeral home and see smoke coming from the little-building-out-back. I know from first hand experience, there ain’t no kitchen back there!

To complete our crash course in being an undertaker, Morticia saw it fitting to end the semester with a personal assignment of composing our own obituary. Being totally baffled at first, I slowly began to warm up to the idea as I brain stormed about how to be the “featured obituary” in my hometown newspaper. First, I needed to come up with an exciting or heroic way to die. Killing myself off by choking on a chicken bone or contracting Salmonella during one of my late night runs to Krystal, just wasn’t glamourous enough for me. I was thinking more along the lines of a skiing accident while vacationing at my chalet in Switzerland, or maybe a blazing fire while rescuing Princess Diana... either way, both would be news worthy. Obviously, I didn’t have a problem coming up with a way to die. That was the easy part. The challenge began with writing about my life. What have I done in my life that’s worth remembering? Will anyone “remember me”?

On that dark day, Jesus was placed between two thieves...one on his right, the other on his left. We don’t know much about these two men, not even their real names. As far as remembrance goes, their lives boiled down to this-they were two criminals who hung on either side of Jesus. One of them mocked Jesus, hurling insults at him...”If you are the Christ, save yourself and us!” The other one repented...”Jesus remember me when you come into your kingdom.” Actually, this dying man’s request had nothing to do with what he had done with his life, but had everything to do with the life of the man who hung beside him. No, not the other loser with the big mouth. I am talking about the man who hung in the middle. The one with the crown of thorns, the King of the Jews, the Chosen One. I am talking about Jesus.

After completing my “featured obituary”, I received an “A” for my made-up fairytale. The fairytale of what I pictured my life to be and how I wanted to be remembered. I listed all my degrees, accomplishments, and awards. I told about my successful career, the volunteer work I had done, and the organizations and clubs I was a member of. I also made sure that everyone knew of my devotion to my family, my church and to our community. I was an achiever, a go-getter, a mentor, and a nurturer. I was worthy of being remembered...

In hindsight, I had it all wrong. My life’s worth is not dependant on my works, awards or achievements. My worthiness is not rated on how many people I have helped, the number of Sundays I have attended church, or the time I have put in at the local mission. Being a “good person” is not what is most important. The words of a dying man puts its all in perspective. He asked a simple request. “Remember me.” That’s all. My worth depends upon the one who remembers me, the one who stands beside me, and that One is Jesus.

“I tell you the truth, today you will be with me in paradise.”

"... confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised Him from the dead, (and) you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you confess and are saved." (Romans 10:9-10.)

************************************************************

“Jay’s Hope” wristbands are here! If you pre-paid, we will begin shipping this week. If you have not purchased a band, and wish to do so, please let us know via email. Instructions for payment are given at the top of this page. Thank you for your support!

MRI Thursday, March 31st-Please continue to pray for Jay’s complete healing.

We should have results late Thursday afternoon. We will post as soon as we know something.

As always, thank you for your prayers! We love you!

Love,
Cindy

*Please pray for Bret and his dear family-caringbridge.org/mo/bretbrady

Sunday, March 20, 2005 6:36 AM CST

****Updated Wed. March 23rd****

You're invited to a powerful, inspirational presentation from Max Lucado. It's a vivid, emotional reminder of Christ's work for us on the cross. Visit www.hechosethenails.net

I will post a new update this weekend!

-Cindy
****************************************

We made it home from Memphis with limited drama. Jay’s tests went well on Thursday. Chemo was on time Saturday - Monday. Jay did experience the normal side effects of this chemo - nerve pain in his hands, legs and feet. The pain is finally beginning to subside now. Because chemo has an accumulative effect, it takes a little longer for him to recover after each treatment. Hopefully Jay will only have to have two more of these treatments. Dr. Gajjar finally gave us a long term plan. After we get good MRI results on March 31st, he will get chemo for three days. He’ll go back the last week of April and get three more days of chemo. Jay will then be declared in remission again and he’ll be off treatment. We’ll begin going back every two months for scans. Please join us in praying for Jay’s MRI, his tolerance of the chemo and wisdom in making the right decisions for him.

Saturday night we had the opportunity to visit the Ronald McDonald House while in Memphis. Lauren King Ministries was there to have an easter egg hunt for the kids. Afterwards they cooked dinner and had chapel in the Meditation Room. I was reminded of what heaven would look like in that room. We had the opportunity to worship with people from all over the world - black, white, young and old. Living in North Macon exposes you to very little diversity. I’m not putting a For Sale sign in the front yard just yet, but enjoy worshiping with others from all spectrums and backgrounds. Unfortunately, Sunday has become the most segregated morning of the week. God loves all His children and I would imagine us worshiping together as a “complete” body pleases Him.

We hope to have Jay’s wristbands this week. Thank you all for being patient. It has taken much longer than we had anticipated. If you are interested in placing an order, mail a check to Jay’s Medical Fund at our home address below.

Please remember Jay’s buddy Bret Brady (www.caringbridge.org/mo/bretbrady). He and his family are struggling right now.

In His Grace,
Jason

Thursday, March 17, 2005 4:40 PM CST

****Please pray for our friend Bret****
(caringbridge.org/mo/bretbrady)

Just a quick update to let everyone know that we made it home safely.

We also have a specific prayer request. Jay is experiencing some intense neuropathy(nerve pain)in his hands, legs and feet. He is having difficulty using both of his hands and he is complaining a lot about his left leg. Jay has a very high tolerance for pain, and like most of our oncology buddies, he takes everything in stride, and rarely complains. If Jay says it hurts, you know he is truly hurting. Please pray for the pain to subside so Jay can enjoy his time at home.

Well, that’s it for me! A more detailed update from my dear, sweet, most handsome husband is coming your way! Okay, so he will probably leave out all the details(and the drama) and just give you the facts....just like a man! :)

Thanks for checking on us!

Love,
Cindy

Sunday, March 6, 2005 11:19 AM CST

****UPDATED Saturday, March, 12th****

Whew! That was a close one!

Thursday, Jay's ANC only came up THREE stinkin' points! At that rate we would be here for weeks! Today, with our fingers and toes crossed, we checked once again, and...drum roll please...Jay's ANC is now 1,000! We will be able to begin chemo today!

To quote Hunter's mom, who recently wrote in the guest book, "Isn't it a strange feeling to get excited about giving your child chemo?!? Stupid cancer."

If all goes well, we will be home Monday night.

Thanks for checking on us!

Love,
Cindy

****UPDATED Tuesday, March 8, 2005****

Well, the verdict is in...we will be gracing “The Jude” with our presence this week. Jay’s ANC jumped to 694 and will have five more days to reach the magical number of 750. I found out earlier today, that our scheduled changed a bit(I know you are all shocked!)...we will do chemo Saturday, Sunday and Monday, instead of Friday, Saturday and Sunday. Due to “the rules”, Jay has to wait exactly 21 days to receive the next round of chemo, and Saturday is the 21st day. So, I ask you...what do you think would happen if we broke “the rules” and did it on the 20th day?!? Ummm....things to ponder....

We leave tomorrow(Wednesday)and hope to be home by Monday night.

I will try and update later this week!

**Please pray for Tyler's family. Tyler earned his angel wings yesterday. As his Dad Pat said, "He is now CANCER FREE!" (caringbridge.org/tn/ptyler)

-Cindy
***************************************

I'd throw in the towel... if I could just find it...and had the energy to throw it!

It’s been one of those weeks. Stomach bugs, head colds, no sleep, yucky weather, cabin fever, cranky kids, messy house and a mommy who desperately needs a Calgon moment! Remember those commercials? The frazzled 30-something housewife/mother with screaming kids in the background, a hungry husband pacing the kitchen, the muddy dog running through the house, the door bell ringing and she looks into the camera pleading, “CALGON, TAKE ME AWAY! That could of been me, minus the cameras and the millions of households across America. I would be “Guilty As Charged” for breaking two of my mother’s proper etiquette rules...Thou shalt not be seen in public without your lipstick, and more importantly, Thou shalt not be caught dead with hairy legs! On the verge of being disowned, I would have never heard the end of it! Nevertheless, I could use a few cap fulls of Calgon to escape desperation and to wash all my troubles away. My dream is to be chin deep in a steamy-hot-sudsy bath until I turn into a prune. Scented candles, a John Grisham novel, Enya blasting through the speakers of my 1980 boom box, and of course, a glass of sweet-cheap White Zinfandel would top it all off. Ahhh...I am mesmerized just thinking about it! Then reality creeps in and I remind myself that a bathtub fantasy will only be a temporary fix. The water will eventually turn cold, candles fade, books and music end, wine gives me a headache, and the inconveniences of life are just beyond the bathroom door. My only comfort, the only “saving grace”, is found in the arms of the Savior.

Matthew 11:28-30 says, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

How many times have you been guilty of “quick fixes”? Isn’t it our human nature to try and cope on our own when difficulties enter our lives? Jesus calls on all of us to hand over our worries, troubles and burdens to Him. No matter what plaques you, He is ready and willing to wrap His loving arms around you, to offer comfort and support, and to carry you if necessary. The invitation is clear. “Come to me...and I will give you rest.” You’ll be glad you did!

And as for me... I will still have those days. Days where if I could find that blasted towel amongst the mounds of dirty laundry and muster up enough energy to throw it, it would be outta here! I would leave the clouds of dust behind, and high-tail it to the nearest spa resort where not only do they have bathtubs, they’ve got Jacuzzis! Road trip anyone?

***************************************

Last week, Jay’s counts hit an all time low since relapse....an ANC of 297. ANC(Absolute Neutrophil Count) is the actual number of white blood cells we have to fight an infection. A normal ANC is 1500, a safe ANC is 500-1500 and a low ANC is less than 500. A low ANC means you should avoid crowded places and people with the cooties. If you do have to go somewhere, you must be armed with a surgical mask and enough hand sanitizer to sterilize a small country. Of course, the week that the stomach bug and a head cold decides to visit our house, Jay’s counts drop below 500. ARGG! As soon as Tanner starting turning shades of green, the troops were deployed. Colonel Clorox, Lutenit Lysol, and Sergeant Soft Scrub have been on a “conquer and destroy” mission ever since. Thankfully, Jay has dodged the bullet, and actually has been the healthiest one of us all! We will re-check his counts tomorrow, and that will determine if we are going to Memphis this week or not. My vote is "not", since typically, Jay's counts take weeks to recover. I am guessing we will still be here, and if anyone is looking for us, just follow the smell of bleach to the bubble house!

WRISTBAND UPDATE: Jay’s Hope wristbands should be here next week! You still have time to order!

Please continue to pray for Big Ben’s family(bens-story.com) and Stanton family(caringbridge.org/la/stanton).

Also pray for our sweet Bret(caringbridge.org/mo/bretbrady), and for our friend Tyler(caringbridge.org/tn/ptyler).

Thanks for checking in on us!

Love to all,
Cindy

Friday, February 25, 2005 2:09 PM CST

Fear of Flying...With Children!!!

I could see it on their faces...sitting at the boarding gate with a grumpy, sleep-deprived 4-year-old and a mischievous, gummy-worm-eatin’ 15-month-old, I could see the panic in the eyes of my soon-to-be-fellow-passengers. Peering from behind their newspapers, People magazines and romance novels, I knew what they were doing...praying to God.

“I promise to never sin again as long as I live...just don’t make me sit next to those rug-rats!”

After an hour delay due to weather in Atlanta, we finally boarded the plane. As we searched for our assigned seats, I could almost hear the sighs of relief as we made our way through the aisle. Who would be the victim of the screams, the loud annoying toys, and the sticky little hands? Approaching our seats, I could see that the kids and I would be seated next to a young, unmarried, twenty-something young woman. Oh boy, were we going to wreck havoc on this poor girls dreams of marrying one day and having children! She will be scarred for life after my two precious boys get a hold of her! Right before sitting down, we discovered that my mother-in-law’s assigned seat was right behind us. That young woman must have been singing songs of praise when we asked her if she would mind switching seats. She said YES with such enthusiasm that you would of thought she had just won the lottery. By this time, it is way past Jay and Tanner’s bedtime and they are both in rare form. Tanner is insisting on sitting in my lap and decides to entertain himself by torturing his big brother. He is snatching toys, throwing half-chewed food, hitting Jay upside the head with his sippy cup and babbling baby chinese very loudly for all to hear. Jay on the other hand, is screaming, thrashing in his seat and trying his best to pry Tanner out of my lap. Before I knew it, I was refereeing a midget wrestling match and we had successfully disturbed everyone around us. As I was slipping into my stress-induced hypnotic state, I heard the captain of our hell-bound plane say that the Atlanta airport was closed and our flight would be delayed yet another hour. Feeling nauseous and wishing I had drugged my children with benadryl, my mother-in-law called Jason to inform him of the latest news. Jason was in the Atlanta airport at the time, and assured us that the weather was fine and that there were planes flying in and out. Ummmm....so what was really going on? Could there be something wrong with our plane or has Northwest employees gone on strike? Or maybe, if I am lucky, we are being highjacked and they will shoot me first! You know, they say that there are things worse than death, and I believe that being sandwiched in a plane with two miserable, uncontrollable children is one of them!

We finally arrived in Atlanta around 11:30pm that night and we were home by 1am Tuesday morning. I will have to say that driving eight hours in the car is becoming more appealing. At least I can strap the kids in their seats on opposite ends of the car, comatose them with Baby Eienstein and Dora the Explorer videos, stop at every McDonald’s along the way for french fries and orange soda, and can even anticipate being there that day at a predicted time. As you are fully aware by now, our lives have enough inconsistencies...so, I am leaving flying to the birds!

Speaking of being predictable...you would never guess that our treatment schedule has been changed once again! I should of predicted(from my 18 month experience) that a four week sabbatical from “The Jude” was just to good to be true! My understanding has been that we would complete this last round of chemo and return for a MRI on March 24th. I called yesterday to confirm the date and was informed that we are scheduled for yet another round of chemo on March 10th and our MRI has been moved to March 31st. Supposedly Jay’s protocol states that a MRI should be performed after the second round of treatment and then after every third. So in a nutshell, we will be DRIVING to Memphis in two short weeks to complete a 5th round of chemo. Of course this all depends on Jay’s counts...which predictably, will not be high enough! We’ll see!

Overall, Jay has had a pretty good week since we returned home. He has only complained a few times of leg and foot pain and his appetite and energy level have been great! Since Jay is doing so well with his treatment, Jason and I have decided that it is now time to begin addressing a few of the late-effects from surgery and treatment. As many of you know, Jay has vision loss in both eyes and his left eye muscle is extremely weak. Right before Jay relapsed, he was fitted for glasses to help with his vision and we were hoping it would improve his left eye. Last week, the eye clinic told us that his right eye has improved(yeah!) but his left eye is the same. The doctor suggested that we begin to patch Jay’s good eye(the right one)2-4 hours a day(yikes!)to help with strengthening his left. So far, we have made it about 20 minutes with lots of bribing! Please pray that Jay will be accepting of his patch so we can eventually move up to a few hours a day.

The other issue that we are dealing with is Jay’s sleep apnea. Since the removal of the trach, Jay’s sleep apnea appears to be getting worse. It has gotten so bad, that the St. Jude sedation team freak every time they put him to sleep. Yesterday, we had an appointment with our local ENT and he has ordered a sleep study. Not only does Jay have large tonsils, but he also has a paralyzed vocal chord from a combination of surgery and radiation. Our ENT wants to see how bad it really is and then possibly remove Jay’s tonsils sometime in the near future. I ask you to please pray for the sleep study to go well, and that removing Jay’s tonsils will be the simple fix.

Well, that’s it for now! I will update again next week. As always, thank you for your support, prayers and interest for our family. Also, thank you for the wonderful response we have received with the bracelets! We hope to have them very soon and will be mailing out the ones that have already been paid for. If you have not purchased a bracelet, please see the top of this page for more information.

Please remember to pray for Stanton’s family:caringbridge.org/la/stanton
Our sweet friend Bret:caringbridge.org/mo/bretbrady
Big Ben:bens-story.com
Tyler:caringbridge.org/tn/ptyler

“The name of the Lord is a strong tower, the righteous run to it and are safe”(Proverbs 18:10).

God is:
the shepherd who guides,
the Lord who provides,
the voice who brings peace in the storm,
the physician who heals the sick, and
the banner that guides the soldier. -Max Lucado

Love,
Cindy

Monday, February 14, 2005 8:21 AM CST

***UPDATE FOR MEMPHIS***(Saturday 2-19)
Well, we are FINALLY starting chemo. Jay's counts needed a bit of assistance with two days of GCSF(a drug that gives your bone marrow a boost). We then had a 48 hour wait period before we could begin treatment. This has been a very LONG week and we are all anxious to get home! We hope to be flying out late Monday night. Thanks for checking in on us! -Cindy

Bruised Reeds and Smoldering Wicks

"A bruised reed He will not break, and a dimly burning wick He will not extinguish." (Isaiah 42:3)

All of our childhood, my brothers and I were raised on the river. Barefoot, sunburned and covered in mud was how you would find us on any given afternoon. My daddy would always affectionately referred to us as his “three little River Rats”. I can still remember getting in trouble in school for daydreaming because I was planning out our afternoon adventures. Setting crab traps, casting for fish bait, chasing fiddler crabs, and building forts in the marsh grass were just a few of the many activities that kept us busy. I can also remember playing with the reeds. The riverbank was full of them, and with our vivid imagination we turned them into lots of things...guns, swords, musical instruments, batons, telescopes...Whatever the adventure, we could always use a reed. But not just any reed would do. We would search for reeds of a certain quality...large, thick and strong. If we came across one that was cracked or bruised, we would just break it in half and toss it away. Cracked or bruised reeds were worthless.

So, what about smoldering wicks? I remember this wedding that I was directing a few years ago(yes, I was a wedding director in my formal life:)) in the early spring. It was an evening wedding and the bride insisted on having a zillion candles in the church, around the church, and anywhere within 100 feet of the church. Every shape and size of candelabra was crammed in the choir loft, all the windows were adorned with huge pillar candles, the pews were decorated with tapers, and the sidewalk and steps were lined with dainty votives. There were so many candles, that I was sure Martha Bowman UMC would be seen from downtown at City Hall! Don’t get me wrong I absolutely love candles...but there is such a thing as overdoing it! Thirty minutes before the wedding, myself and two scared-to-death acolytes were rushing around lighting all the candles. I had gotten sidetracked with a bridesmaid’s ripped dress(another long story)that I had forgotten about all those dang candles! Guest were beginning to arrive, I was shouting orders, and those two boys were on a divide-and-conquer mission. I decided to send them outside to tackle the votives and I began to work my way around the sanctuary. Moments later, my do-boys came rushing back inside to inform me that Mother Nature had thrown a kink in our plan...it was beginning to rain. The clouds had moved in, the wind was blowing and a lite mist was falling from the sky....just enough to extinguish the candles one by one. Panicked and desperate to please my blushing bride, I positioned the boys by the doors, armed with lighters, and with strict orders; ”your life depends on keeping those candles lit!” Time after time, I witnessed those determined acolytes running outside trying to save each smoldering wick. Needless to say, the rain finally won that battle...but not until every guest was in their seats.

These two stories came to my mind while I was studying Isaiah 42. When we are those bruised reeds or those smoldering wicks, we need to understand that God hasn't given up on us. He is the reed-repairer and the flax-restorer. He is the One who carefully gathers up the bruised reeds and molds them into magnificent things. He is also standing guard to rescue that smoldering, smelly wick and make it burn brightly once again. Sometimes, it is in our weakest moments that He makes us the strongest. He takes those bruised, burnt, parched places and uses those experiences of suffering to enable us to minister to others. All of us go through hard times that make you feel almost broken and almost snuffed out. If you have never gone through those things in your life, you will. And it can be the best thing that has ever happen to you. On several occasions, I have shared with others that I am finally at a place where I can thank God for the trials that He has allowed in my life. Don’t get me wrong, I am not thankful for the cancer or for Jay’s suffering. God tells us that we are to be “thankful in all things”, not for all things. I am thankful for the person that I have become, for the lessons that I have learned, for the people that have been placed in my life along the way, and for God gathering up my broken, smoldering spirit and making it strong and bright. It is an unending process, and God is continuing to repair and restore my life. He still has His work cut out for Him, but I can look back over the past 18 months with amazement at what He has already accomplished! Glory to God!

“I have chosen thee in the furnace of affliction.”(Is 48:10)
“Let the afflictions come, for God has chosen me. Poverty, you may walk through my house, but God is already in my house, and He has chosen me. Sickness, you may intrude into my life, but I have a cure standing ready-God has chosen me. Whatever occurs in the valley of tears, I know He has chosen me.”(Streams in the Desert)

Living on St. Jude Time...

Last week, we received a call from a St. Jude scheduler...”Mrs. Gaskins, William(Jay’s first name)has appointments here at St. Jude on February 16th- 19th.” And the whole neighborhood heard, “WHAT! Surely there is some mistake. We are not due back until the 23rd.” And the don’t-blame-me-I-am-just-filling-in-today scheduler said, “you will have to speak with your nurse about that. I am just the fill-in, don’t-know-squat-scheduler.” Okay, maybe I am ad- libbing a bit, but I know that it what she was thinking! We have had major issues since last spring with keeping a permanent scheduler in our clinic. The rumor is that Dr. G scares them off, but if the truth be known, it is really the schizophrenic parents of E clinic...I should know because I am the leader of the pack! As long as my schedule is pleasing to me, I will be your best friend. But, hurl me a curve ball and someone is going down! I mean isn’t it enough that I have lost control of every other aspect of my life? I am only asking for consistency and maybe even a little convenience(Ha!). I want to fit St. Jude into my life for a change, instead of trying to fit my life into St. Jude(See, I told you that God has His work cut out for Him)! I will say, that a few months ago, we were blessed with a wonderful permanent scheduler. She has been very helpful and has even figured out how to handle me and all my “control issues”(she prefers morning appointments, if at all possible, she wants to avoid the medicine room on the weekends, and most importantly, she doesn’t like surprises...:)) . So, please know that amidst my frustration I know that there is nobody to blame....and I have come to accept the obvious fact that we will probably live the rest of our lives on St. Jude time.

So, needless to say, we are scheduled to fly to Memphis tomorrow....only if Jay’s counts are up today(see what I mean!).

I will keep you posted!

Still learning to give up control,

Cindy

Also, please remember to pray for our friends...bens-story.com, caringbridge.org/mo/bretbrady, caringbridge.org/tn/ptyler.

Stanton(caringbridge.org/la/stanton) earned his angel wings yesterday morning...please pray for his family.

Thursday, February 3, 2005 10:05 AM CST

***Attention all locals!!! The Macon Ronald McDonald House is having it's second annual McDazzle with Love tomorrow night(Thursday Feb. 10th)at 7pm. There will be dinner and a silent acution of $30,000 worth of stuff! To reach our goal of 275 tickets we need to sell 26 more. The tickets are $75 a piece(tax deductable)and I promise it will be lots of fun! Email me ASAP if you are interested. Thanks!***

***NEW PHOTOS IN ALBUM***

****Update Monday, 2/7/05****
Please see info above about ordering Jay's wristbands. We are beginning to take orders now, and will ship them out as soon as we get them.

There is a link below that will give a computer image of the band.

Thank you for your support!****

***Please pray for another St. Jude family who has received some very difficult news-caringbridge.org/la/stanton***

“The tumor is almost completely gone!”

Those were the exact words spoke by Valerie, our Nurse Practitioner right after she received the results of Jay’s MRI. You should have seen us...me, Valerie, Tara(Jay’s other nurse), and Mrs. Crystal(nursing assistant) jumping around clinic clapping our hands like little school girls. Our entire medical team was so excited! Dr. Gajjar was in a meeting at the time, but I heard that he was chasing people down to share the good report. I think that he was shocked to say the least, but he is just as thrilled as we are. He told Valerie that he really wanted to be the one to tell me because he is always delivering bad news. I think that they knew better than to make me wait...I had already set up camp in the E Clinic waiting area. I wasn’t leaving without results! I did get a chance to meet with Dr. G Thursday morning to discuss Jay’s treatment plan. Last month, Dr. Gajjar had agreed to the possibly of using Gamma Knife(a type of laser)if the tumor stayed contained and was not growing. So, I asked Dr. G if he was still considering this procedure. With a grin on his face he said, “Well, to be considered for Gamma Knife you have to have a target. And it is looking like we are not going to have a target.” I had to say Praise God on that one! So, the plan is to complete one more cycle of chemo in three weeks(the week of February 22) and to repeat the MRI the end of March. What we will do then, I do not know. Either stop treatment(yikes!), Or follow-up with additional chemo. Jason and I are just trusting God to give our medical team the wisdom they need to make this decision. I do know that Jay will continue to be followed very closely no matter what the decision.

Besides the adventure we had getting home, this has really been a great week! Jay is feeling good, he has lots of energy, and very minimal pain. He has complained a few times about his legs hurting but nothing compared to last time(Thank you Lord!). I also want to share with you the many improvements we are continuing to see since we started the Voodoo medicine(natural supplements). Not only does Jay have more energy, an increased appetite, and weight gain...his thinking process has improved, his balance and strength has improved, and his eyes seem brighter. I believe that it even may have assisted him with recovering from sedation after his MRI. In the past, it usually takes Jay 24 hours to regain his balance and appetite. This time(first time being on the supplements)Jay was completely back to normal within an hour. I am telling you that this stuff is amazing! Last week, Jason was telling a friend about the products that we have Jay on. They said that they know(and Jason actually knows him too) a doctor who was diagnosed with cancer and was given only 3 months to live. He stopped treatment and began the same supplement regiment that Jay is on...and that was 15 years ago! He did finally past away recently from the same cancer, but he was able to extend his life for 15 years. There are countless stories similar to this one, and cancer is not the only disease or illness that it can help. It has help people with diabetes, limes disease, seizure disorders, AIDS, liver disorders...and the list goes on! Okay, I know I am starting to sound like one of those late night info-commercials...but really, if you are interested in checking into these supplements, pick up the phone today..Oh, I mean email me. I would be more than happy to share more information.
Okay, I’m off my soap box...

I want to thank all of you again for your BOLD persistent prayers for Jay and our family. Thank you for believing in Jay’s miracle with us and for having the faith of Abraham. “Against all hope, Abraham in hope believed”...(Romans 4:18). This verse and Abraham’s story, has been placed on my heart countless times during our journey. It has given me strength during my weakest moments... it has been my lifeboat in the deepest of waters. For 18 months now, my relentless prayer has been that Jay’s story would continue to be a story of hope and healing...a story of miracles.
I came across this devotional about Abraham, and want to share it with you.

The Faith of Abraham

God has used this verse many times to encourage me when I've been faced with hopeless situations and was tempted to lose heart. I find Abraham's example of faith so profoundly inspiring, and it never ceases to give me hope. The phrase, "Against all hope, Abraham in hope believed," speaks of the kind of faith that defies hopelessness. Abraham was keenly aware of his doubtful situation. In fact, the next verse confirms this: "Without weakening in his faith, he faced the fact that his body was as good as dead--since he was about a hundred years old--and that Sarah's womb was also dead." (Romans 4:19) Abraham was not in denial. He clearly was facing the facts of his situation, yet Scripture says that he did this "without weakening in his faith." No wonder God honored this man the way He did. How many of us in Abraham's situation would have held on to the promise of God? Some believers think that you have to be in a kind of state of denial in order to receive the miraculous in hopeless situations, but I don't think that's true. Real faith says, "I know my situation looks hopeless, but I also know that I belong to a God who has a history of moving mountains for His children, and I'm keeping my eyes on Him!" You don't have to know HOW God's going to keep His promise to you, all you have to know is that He will do it!
Romans 4:20 says, "Yet [Abraham] did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised." The Message Bible puts it this way: "Abraham didn't tiptoe around God's promise asking cautiously skeptical questions. He plunged into the promise and came up strong, ready for God." One thing is certain--a lack of faith will make us waver. It will cause us to doubt God's ability and willingness to do the impossible on our behalf. It's God's desire that we be "fully persuaded" that He is able to work wonders in our lives, even when our circumstances are screaming defeat at us. Notice that this verse reveals that Abraham "gave glory to God" while he was waiting for God to fulfill His promise to him. Abraham didn't wait until the manifestation of his miracle to give thanks and praise to the Lord--that doesn't take much faith. But he began thanking God in advance, strengthening his own faith in the process. The Living Bible brings this out best when it says: "He praised God for this blessing even before it happened." Scripture goes on to say that it's "those who are of the faith of Abraham" who receive the promises of God. (Romans 4:16) If we want to receive the kind of blessings that Abraham did, we need to demonstrate the kind of faith that he did. That means we will have to push logic and reasoning aside and focus on God and His promises. If you're a child of God and you'll follow Abraham's example, rest assured that what God did for this great man of faith, He'll do for you, too!

Prayer: Lord, teach me to have the faith of Abraham. When I encounter "hopeless" situations, help me to keep my eyes on You, instead of on my circumstances. Remind me not to wait for the manifestation of my miracle before I give You thanks and praise. Thank You that as I follow Abraham's example, I will impact the lives of others and glorify You!

With that said, I am so excited to announce that we are in the beginning stages of creating a foundation in honor of Jay. We have named it “Jay’s Hope” and our #1 mission is to be a voice of hope through Jesus Christ for children and their families who have been diagnosed with cancer. We have also created a wristband as a symbol of our faith that “Against all hope, in hope we believe”. The bands are light blue which represents faith and healing, and “Jay’s Hope” is inscribed on them. A picture of the band and more information will be provided soon.

Thank you again for your prayers, support and encouraging words in the guest book. Keep at it! God isn’t done with us yet!

Also, please remember to pray for our friends...bens-story.com, caringbridge.org/mo/bretbrady, caringbridge.org/tn/ptyler.

Love,
Cindy

Tuesday, February 1, 2005 7:25 AM CST

"It was he who would chance the perilous journey through blistering cold and scorching desert, traveling for many days and nights, risking life and limb to reach the dragon's keep, for he was the bravest, and most handsome in all the land..." (Line from Shrek 2)

Drama, drama, drama...never a dull moment in the life of the Gaskins’! Our endeavors to get home for two days reminded me of Prince Charming’s description of his journey to save the princess...it you have no idea what I am talking about, you must go rent the movie! After two cancelled flights, an 8 hour trip in a rented Astro van, coming home to yet another hotel room because we had no power, driving around town in the car all day just to stay warm, we are NOW officially home!

I promise to update either tonight or tomorrow.

Mounds of dirty laundry are calling my name...

Wednesday, January 26, 2005 3:47 PM CST

***Update from Memphis***

"Praise God from whom all blessings flow, Praise Him all creatures here below...."

Thank you for "rocking" heaven with your prayers and petitions for Jay! Now, lets rock it again with praise!

The plan is to continue on with Chemo for now. I will meet with Dr. G in the morning to discuss all the details.

Stay tuned...you are witnessing a MIRACLE!

"I have begun to deliver...Now begin to conquer and possess."(Deuteronomy 2:31)

Love,
Cindy

Praise God! Jay's tumor has shrunk so much that it is barely visible. I will update again later with more details after I come down off the clouds.

In His Grip, Jason

Monday, January 24, 2005 7:55 AM CST

Prayer Vigil for Jay Gaskins

“Devote yourself to prayer, being watchful and thankful...”(Colossians 4:2)

Please join us in praying BOLDLY for Jay’s “spontaneous remission” Tuesday, Jan 25th beginning at 8am through Wednesday, Jan 26th at 8pm.

Our church (Martha Bowman United Methodist), is having a prayer vigil for Jay’s upcoming MRI which is scheduled for Wednesday at 8am(central), 9am(eastern). The congregation was asked to sign up for a ½ to 1 hour slot during this 36 hour period to uphold Jay and our family in prayer. I would like to extend this invitation to all of our faithful prayer warriors. Please choose a time that you will devote in prayer by listing it in the guest book, or by email. Jason and I are always humbled by the many prayers and petitions that are lifted up on behalf of our son. We thank you for dedication and commitment.

"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil to give you a future and a hope. Then you will call upon me and go and pray to Me, and I will listen to you."(Jer.29:11-12)

Jay’s ANC was 1600 on Thursday! Thank you for your prayers! It has never been that high during treatment....We’ll take it! We are flying out of Atlanta tomorrow around lunch time heading to Memphis. My parents will be accompanying me to help with the boys..this I am very thankful for. We usually endure the 7-8 hour car trip, but decided to give flying a try. We have flown Angel flight(small prop planes) many times, but never commercially. The flight is only an hour long! An eight hour car trip with two grumpy boys watching Baby Einstein over and over again, or an hour flight with peanuts and diet coke...tough decision! If all goes well, we may be flying from now on. Jay is so excited about flying in the “BIG” airplane(and of course that Pappa is flying with him). My only concern is I-can’t-sit-still Tanner. Making him sit in my lap is always an interesting task to say the least. He will probably be sitting on my head by the time we arrive in Memphis. Just pray that we have a safe, uneventful flight.

Assuming that all is well with the MRI, we will stay and complete three days of chemo. Our return flight home is scheduled for Saturday evening. I will also ask that you pray hard for Jay to handle this round of treatment without any pain or complications. I am somewhat fearful due to his response last time. I can handle nausea over pain any day...and I am sure that Jay would agree!

During my prayer time this week, I came across this devotional by Max Lucado that I wanted to share with you.

A Hunch and a Hope

“Daughter, your faith has made you well. Go in peace, and be healed of your affliction.” (Mark 5:34)

Maybe all you have is a crazy hunch and a high hope. You have nothing to give. But you are hurting. And all you have to offer Him is your hurt. Maybe that has kept you from coming to God. Oh, you’ve taken a step or two in His direction. But then you saw the other people around Him. They seemed clean, so neat, so trim and fit in their faith. And when you saw Him, they blocked your view of Him. So you stepped back.

If that describes you, note carefully...one person, whom Christ commended...for having faith. It wasn’t a wealthy giver. It wasn’t a loyal follower. It wasn’t an acclaimed teacher. It was a shame-struck, penniless outcast-[a woman who had been bleeding for twelve years]-who clutched onto her hunch that He could and her hope that He would.

Which by the way, isn’t a bad definition of faith. A conviction that He can and a hope that he will.

I will post results Wednesday...As soon as I know something.

Clutching to my hunch and my hope,
Cindy

***Please continue to pray for our friends who are in desperate need of God’s perfect peace...bens-story.com, caringbridge.org/tn/ptyler, and caringbridge.org/mo/bretbrady.

Also, please pray for good results for Ryan who has an MRI on Thursday.
*caringbridge.org/oh/ryan

Thursday, January 13, 2005 3:46 PM CST

***UPDATE Thursday 1/20***
Just a quick note to ask you to pray for Jay's counts to recovery in time for chemo next week. As of this past Monday, his ANC was 575 and they need to be at least 750 for him to be eligible for treatment. We are going again today for labs. Also, please pray for three of our St. Jude families... bens-story.com, caringbridge.org/mo/bretbrady, and caringbridge.org/tn/ptyler. All three could use your encouragement and most of all your prayers. I will update again sometime this weekend. Love to all! -Cindy

Hair today, Gone tomorrow...

Over the past year and a half Jay has sported many “looks” when it comes to hairstyles. I guess you could say Jay has “fear of commitment” and just can’t decide on a “do”. At the beginning of his treatment last year, Jay lost his hair everywhere except right down the middle. It was very punk rock-ish and Jay liked to call it his Chicken-hawk(a.k.a. mohawk). Well, It didn’t take long for the St. Jude peer pressure to set in and Jay was ready to try the “Hair by Chemo” look(a.k.a bald). Bald was definitely in around “The Jude”...even the chicks were bald. Being bald meant you were “one of the guys”...it was like being initiated into a fraternity. A patient with hair immediately would send up a red flag and cause the alarms to sound...”NEWBIE ALERT, NEWBIE ALERT!” After moving back home in April, Jay realized that the “bald fad” had not caught on down here in Georgia. Being bald in the deep south means you are either a Skinhead or a “Stone Cold” Steve Austin fan....neither which are cool. So, Jay decided that it was time to jump on the "1980's comeback wagon" and grow himself a Mullet. The Mullet was a huge hit with all the ladies and Jay was pleased with his new look. He actually stuck with it for months. Then relapse occurred and chemo was started once again. Over the past 6 weeks, Jay’s hair has been falling out at a rapid pace. But this time around, due to the many bald spots, we were having a hard time coming up with a style. Honestly, it was starting to look like a bad case of the mange. So, Jason and I made an executive decision to cut it. Last Wednesday(Jay’s B-day), two of my good friends assisted me in giving Jay the “GI Joe” cut(a.k.a. the buzz). It is actually very cute and Jay doesn’t seem to mind it. I am sure he will be as slick as an ice hockey rink very soon, but for now we are enjoying the “Be All You Can Be” look.

Last week continued to be a rough one for Jay. His blood counts were low, he was fatigued, had no appetite and he continued to complain of pain in his legs and feet. I finally addressed the pain with Dr. G and he said that Jay was experienced Neourpathic(nerve) Pain caused by the Chemo. The only remedy would be time or a another seizure medication that would be long term. We opted to wait it out and try to avoid giving Jay yet another daily drug. I mean it’s TWELVE a day enough?!? By the weekend, Jay was feeling better and the pain had finally stopped. By Sunday, Jay was a totally different child. He was playful, eating well and had more energy. Since Jay’s relapse, I have been investigating different natural medicines. I have been very skeptical in the past, but I think when you get to this point with any disease, you will just about try anything. So, in mid-December we took Jay to a very reputable Nutritionist(and also a Christian) who recommended several nutritional supplements. After running it by Dr. G and the St. Jude Pharmacist, we began a period of detoxing and then last Friday Jay started the actually supplements. So, Sunday when Jay was obviously making a turn around, we wanted to think that maybe the new stuff was contributing to him feeling better. But being the skeptics that we are, we knew that it was more likely because his counts were up. Monday and Tuesday were even better than Sunday with Jay’s energy level on the rise and more importantly his appetite. Monday afternoon, Jay received a one of those large cookies(that would feed a crowd) with icing from our cousins Roslyn, Chase and Porter. Normally(as in just last week) Jay would have probably passed on the cookie leaving Jason and I to eat it. But after taking one look at it he said, “MMMM mamma, can I eat the whole thing? By myself?” “Of course you can”, I said(thinking, yeah right!). With determination in his eyes and “divide and conquer” in his voice, he replied, “Well, let me roll up my sleeves.” And I kid you not, Jay sat there for thirty minutes shoving cookie and icing into his mouth. He had red, white and blue icing everywhere! After having to force feed him just a few days ago, watching Jay eat that cookie did my heart so good. Thank you Roz for sending it...he is still enjoying it! Tuesday morning I took Jay to have his counts checked. Based on Jay’s past track record, they should of been up and I would have bet money on it. So, when Dr. Vernon told me that his counts are lower this week than they were last week, my mouth hit the floor. I couldn’t believe it! So what made the difference? Well, let me just say that we are now official Voodoo believers! The only thing different we have done is the natural supplements. Yes, I said natural...they are made 100rom fruits and vegetables. If this stuff can work it’s “magic” in just a few days, imagine what it could do over the long haul. I will keep you posted!

This weekend we are having Jay’s delayed birthday party. “Jay the Builder” has requested a Home Depot party...and whatever Jay wants, Jay gets! So, Saturday we will be at The Home Depot celebrating the BIG 4! He is so excited that every morning he awakes asking, “Is today my party?” Please pray that his counts are up in time for his party so we don’t have to worry about exposure.

Many of you have probably read The Purpose Driven Life By Rick Warren. If you haven’t, you should...or if you are like me, I had all good intentions of reading it but have only skimmed the chapters once or twice. I think that is what intimidated me...the word “chapters”...and there are FORTY of them. Now don’t get me wrong, I enjoy reading...or should I say I use to enjoy reading. Before three rugrats, housework, laundry, cooking, and car pooling took over my life. When I have free time(which is not too often!)reading for any length of time is just not always appealing to me...it usually just puts me to sleep. Reading now a days, consist of books like Dr. Seuss stories, If you Give a Mouse a Cookie, and Where the Wild Things Are...ya know, the ones I am really not reading because I have them memorized. Anyway, last week during one of my “pity parties” over Jay not feeling well, I found a miniature edition of The Purpose Driven Life while I was grocery shopping. The book itself is pocket size(perfect for the diaper bag)and the chapters are more like mini devotions(can be read in the car pool line, during a quick trip to the bathroom or in between loads of laundry). It is kinda like having cliff notes. I have been enjoying it and now I feel like I can have an intelligent conversation with those who have joined “The Rick Warren Fan Club”. I don’t think that it was an accident that I found this book...especially at the grocery store! The first day's devotion was exactly what I needed during my little “pity party”. It spoke volumes to my heart and I thought that I would share it with you.

It All Starts with God

“For everything, absolutely everything, above and below visible and invisible...everything got started in Him and finds its purpose in Him.”(Colossians 1:16)

It’s not about you.

The purpose of your life is far greater than your own personal fulfillment, your peace of mind, or even your happiness. It’s far greater than your family, your career, or even your wildest dreams and ambitions. If you want to know why you were placed on this planet, you must begin with God. You were born by His purpose and for His purpose.

Wow. That last sentence hit me like a ton of bricks. I was born by His purpose and for His purpose...or better yet...Jay was born by His purpose and for His purpose. God created Jay for His purpose and plan and not for Jason’s or mine. He wasn’t created to fulfill my dream of having “blue ribbon” children nor was he created to fulfill Jason’s dream of playing football for Georgia one day. Jay was created only for the glory of our Heavenly Father. Jay’s life has purpose, his fight has purpose, and his victory will have purpose. We may not see the “big picture” now, and we may not understand, but we always find comfort in knowing that God has a precious and perfect plan. That is what gives Jay’s life significance...that is what gives us hope.

Thank you for your continued prayers.

Love,
Cindy

Monday, January 3, 2005 9:02 PM CST

****1/7/05 NEW PHOTOS IN ALBUM****

***Wednesday January 5th***
HAPPY BIRTHDAY BABY JAY!!!!

DADDY, MOMMY, SISSY AND TANNER LOVE YOU VERY MUCH!!!

After a wonderful Christmas week spent surrounded by family and friends, we packed up the family and headed to Tennessee for Jay’s second round of Chemo and for a mini vacation. Our first destination was the Aquarium in Chattanooga. The kids had a great time and Jay loved seeing all the sharks. From the moment we step into the Aquarium, Jay was on a mission to find the sharks. I am not sure what his fascination is, but he has always thought that sharks are cool! From Chattanooga we made the long haul to Memphis. We were pleasantly greeted by snow! The kids were so excited! I knew there was a reason Santa brought snow boots! Tuesday began with blood work, an EKG/ECHO and a hearing test. Jay started his Chemo Tuesday afternoon in the Medicine Room(I just couldn’t convince Dr. G to let us do it in the Recovery Room:))and finished up on Thursday. Our overall experience was a little more pleasant this time around...probably a combination of Daddy being there and our beloved sedation nurses keeping the Medicine Room on their toes!:) We were also able to spend time with several of our dear friends...as always, they help keep our spirits up. On the other hand, the side effects from the Chemo seemed to be a little more harsh. Tuesday evening Jay began complaining that his hands were stinging. By Wednesday, the pain had moved to his legs and feet. The cold weather, cold drinks and cold floors seemed to intensify the pain. Thankful we are now back in GA with unseasonable warm weather...and we will take it! Jay continues to have some discomfort in his legs, but it has definitely improved.

While we were at St. Jude, Tanner came down with a stomach virus that was going around the Grizzly House. Ya know, when you are still using all fours to travel, you become a prime candidate for the crud! The virus followed us to Nashville and Jason and I were up all New Year’s Eve sick. Not fun...especially when no partying was involved. The Opryland Hotel is beautiful this time of year and we were able to enjoy ourselves despite being sick. Kaitlyn and Jay have somehow escaped the virus wrath...I just pray that we can get through this week without it rearing it’s ugly head again.

Over the past few days, I have been contemplating all the events in our lives that took place last year. 2004 was a difficult year for our family...it was actually the WORST year of our lives, but in even more ways it has been one of the BEST. Despite all the heartaches, our merciful God has been undeservingly good to us...He had carried us through. I would like to share just a small glimpse of the year that has changed our lives forever...

2004
We were in for the ride of our lives...

THE CANCER EMOTIONAL ROLLER COASTER

The most explosive, unpredictable coaster on the planet blasts-off to an unbelievable 230 feet with a 215 foot dive back to Earth at hyper-speeds approaching 100 m.p.h. This out-of-control, colossal mega coaster features an ultra-intense, year and ½ -long track packed with relentless FEAR! White-knuckled, hang-on-for-dear-life, when-will-this-ever-end FEAR! With it’s steep and dramatic drops, double highly-banked horizontal loops, an S-curve and high-speed "hammer head" featuring intense, tight twists and turns are jam-packed into this colossal scream machine. Even the most courageous will find themselves braced against the seat, clenching their jaws and squinting their eyes tightly shut.

January 2004
disappointed, worried, anxious...
We returned to Memphis after being home for Christmas. Right before the holiday season, we learned that 10 weeks of aggressive chemo had failed...Jay’s cancer was back. We began a new chemo treatment in hopes to prolong high-dose radiation.

February
panicked, fearful, threatened...
Jay begins to have uncontrollable seizures due to the cancer cells attacking his brain. We end up in the ICU for 14 days. Radiation becomes our only choice.

March
shaken, devastated, angry...
After 4 weeks of high-dose radiation, Jay begins having upper-airway difficulties. We discover that he has paralysis to his left vocal cord and the radiation was causing inflamation. Jay was aspirating into his lungs and his airway was being restricted during sedation. To complete his last 10 radiaiton treatments, Jay had to have a G-tube(feeding tube) placed into his stomach and a Trach placed into his neck. And if that wasn’t enough, his little body was covered with burns and a potentially life threatening rash. We spent 18 days in the ICU.

April
joyful, thankful, blessed...
Jay is cancer free! We received the first negative spinal tap in months and Jay completed his treatment. After six long months, the boys and I were able to move back home!

May
excited, relieved, rejoicing...
Clean Scans! Jay also got his G-tube removed. He is now able to eat and drink by mouth.

June
VICTORIOUS!
Jay’s victory party was held to celebrate God’s mercy and gift of healing.

August
Stressed(about scans and surgery), Peaceful, memorable...
Clean Scans! Jay’s Make-A-Wish trip to Disney World. He also had his trach removal surgery.

November
disappointed, worried, anxious, panicked, fearful, threatened, shaken, devastated, bitter, angry...
New tumor growth was detected. Jay had relapsed for a second time. Our Doctor has given us no hope for a cure this time...only time.

December
hopeful, courageous, faithful, comforted, assured, loved, peaceful, thankful...

“I sought the Lord and he answered all my fears”(Psalm 34:4).

“Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with my gracious hand”(Isaiah 41:10).

...Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior...”(Isaiah 43:1-3).

2005
Believing in Jay’s Miracle

“Do you believe that I(God)am able to do this?”(Matthew 9:28)
Be strong, take heart, all you who hope in the Lord”(Psalm 31:24).

Thank you for all your love, support, prayers and friendship over the past year. God has given us one of His best gifts and tools to employ in our battle with this beast... He has given us you! Our family, friends, church, St. Jude friends, caringbridge friends, our medical team and even complete strangers who have never even met us. We couldn’t have made it without you!

“Two are better than one, because they have good return for their work: If one falls down, his friend can help him up! But pity the man who falls and has no one to help him up!” (Ecclesiastes 4:9-10)

Praying that all of you have a new year full of blessings!

By the way, a special little boy...oh, excuse me...and BIG boy that I know is going to turn four on Wednesday the 5th! Mommy and Daddy have a few surprises up their sleeves!

Love,
Cindy

Prayer request:
Cofer Hall-a 6 week old baby boy battling RSV.
Gunnar Sterk-a two year old friend who is recovering from his second brain surgery.
Sclader Heindl-recovering from the chicken poxs.
Bret Brady-caringbridge.org/mo/bretbrady
Jakob Vanezuala-caringbridge.org/ca/jakobmvalenzuela
Bens-story.com
luvforlou.com
caringbridge.org/il/aarondhunter
caringbridge.org/wi/garrettstarr1-scans this week.

Praise reports:
Easton has completed his "big chemo" treatments and is doing well! (caringbridge.org/fl/easton)

Louie received clean scans last week!
(caringbridge.org/ky/louie)

Sunday, December 26, 2004 8:43 PM CST

Just a quick update...we are getting ready to head to Memphis tomorrow. We are planning on taking the "scenic" route through Chattanooga so we can visit the Tennessee Aquarium. The kids are very excited! Jay has never been and Kaitlyn was only two the last time we were there. Jay will receive his second round of Chemo Tuesday, Wednesday, and Thursday morning. Then New Years Eve and New Years Day we are spending in Nashville, TN at the Opryland Hotel! Yippee! A friend of the family has graciously provided two free nights for our family. Before Jay relapsed, we had a trip to the Mountains(West Virgina) planned for this coming week. We had to cancel it due to treatment scheduling, but are determined to make up for it!

Please pray for safe travel, uneventful Chemo treatments, and pray that Jay will feel well enough to enjoy Nashville. I will try and update sometime this week from Memphis.

Hope you had a Merry Christmas and a blessed New Year!

Love,
Cindy

Wednesday, December 15, 2004 1:58 PM CST

***NEW PHOTOS IN ALBUM!***

Hope is Real

“Dear Jay, Get well soon. I hope you feel better soon. I made this just for you. I am praying for you every night. You are special. Merry Christmas. Please do not give up hope.”

These are the words from the first and second graders at Kaitlyn’s school. Their art class made cards for Jay this week. A number of these children have been praying for Jay for over a year now, but most of them have never even met Jay. It was so touching to read their heartfelt messages to Jay and to see all the beautiful art work. Jay has also enjoyed looking at them and asking, “what does this one say Mama?” As I was reading them to Jay, one card in particular caught my attention. It is from a little boy who is probably about seven years old. He wrote, “Dear Jay, I hope you feel better soon. My name is Jonathan. We will keep you in our prayers. Please do not give up hope.” Now what does a second grader know about hope? When I was in second grade hope to me was my brother and I Christmas Eve hoping that Santa remember everything on our list. We would lie awake for hours naming all the toys we were “hoping” for. And then as I got older, hope encompassed all of my wishes and dreams. I recall many times hoping that no one would see me getting out of my Dad’s station wagon at the movies. “Oh, I sure hope that cute guy in algebra ask me out.” “I hope I can pass algebra so I can get that new car for my 16th birthday.” “ I hope to get into the college of my choice.” “I hope to have a successful career one day.” I hoped to get married, have children, live in a nice house, drive a nice car, and be the picture perfect “normal” family. Sound familiar? Isn’t that what society tells us we should aspire for? Success, happiness, and just to be “NORMAL”? Before September 16th 2003 my “hopes” and dreams were a reality. God had blessed us and I had more than I could have ever hope for. We were just a normal family. In hindsight, I had it all wrong. I was placing my hope and happiness in all the wrong places. I was ignorant to the true meaning of hope. Over the past 15 months, Jason and I have come to know and understand true hope. Hope in our Lord Jesus Christ. The hope that no matter how hopeless our situation appears, we know that our God will not fail us. There have been many times during this journey that we could not see or feel the hope, but we knew in our hearts that it was(and is)still there. How do we know for sure? Because the Word of God promises us hope.

Psalm 39: 7 "But now, Lord, what do I look for? My hope is in you."

Psalm 42: 11 "Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."

Psalm 25: 4,5 "Show me the path where I should walk, O LORD; point out the right road for me to follow. Lead me by your truth and teach me, for you are the God who saves me. All day long I put my hope in you."

Psalm 25: 3 "No one whose hope is in you will ever be put to shame,…"

Psalm 33: 18 "But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love,…"

Psalm 119: 49 "Remember your promise to me, for it is my only hope."

One definition for hope is: To look forward to with confidence or expectation. When we have hope, we have life. It is more than just asking God for something we so badly need; we must expect our miracle. Somewhere in the midst of asking, believing, and expecting God to answer, we will find what we are looking for.

It has taken me over thirty years to finally understand, but at the tender age of seven, Jonathan is learning the true meaning of hope. What a blessing!

This is from on of my daily devotions this week:

“Trust God. He wants you to trust Him. You need to agree with God about your situation. What does God say about who you are and what His will is for your life? Don't go by your feelings. Instead we should remind ourselves that God only has plans for us that are good. Jeremiah helps us remember what God has to say about us. "For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope." (Jeremiah 29: 11 )”

Jay is doing well. His counts are dropping, but for the most part he is feeling good. As for the rest of us, we have been enjoying the Christmas season and visiting with family and friends. We were able to surprise my family in Brunswick this past weekend by showing up at our annual Christmas party. Last year’s party we were still in Memphis, and this year we were expecting Jay’s counts to be too low to attend. Friday morning’s counts were better than expected so we packed up the truck and headed south! The party was held in a barn out in Mt. Pleasant, Georgia...just after Sterlin’ but right before Jesup...very fitting for the little bit of “redneck” in us! It was so good to see everyone and everyone was so surprised to see us. The kids had a blast playing with their cousins(all 12 of them!), getting lots of hugs and kisses from Grandparents, Aunts, and Uncles, going on hay rides, seeing Santa, and opening presents. Then Sunday before we left, Jay insisted on driving Pappa’s new boat...despite that it was thirty degrees outside! So we bundled up and Captain Jay took us all on a scenic cruise of the river. Check the photo album for pictures! As you can see, we all had a grand time!

Well, this week will also be full of festive activities. Kaitlyn is singing in her Christmas pageant at church tonight, her school program is Friday, and this weekend will be spent baking cookies and trying to finish my Christmas shopping. I have always loved this time of year , but as you can imagine the past two years have brought new meaning to my Christmas spirit. My Christmas is now filled with the peace of hope that has lifted me out of darkness and into the light of Jesus Christ.

“A Child would be born and given to bring hope into the hearts and lives of the hopeless. This Child was the "Light of the World" (John 8:9) and He came to pierce the darkness that we might live. The Child of Hope is Jesus! The One whose birth, our hope, we celebrate at Christmas.”

Where is your hope today? Is it wrapped up in the expectations of a gift under the tree? Is it lost in the darkness that surrounds your life? We all need to learn to hope again, for there's always hope and the hope we have in Jesus is real!

As always, thank you for your prayers. And please remember our many friends who are also hanging onto to their hope in the midst of darkness. Aaron Hunter(il/aarondhunter)earned his superhero cape last week and is now flying with Jesus. Please pray for his family. Please pray for Bret(mo/bret), Ben(bens-story.com), and Lexi(luvforlou.com). They could use a Christmas miracle!

Merry Christmas!

Love,
Cindy

Monday, December 6, 2004 9:45 PM CST

Our week in Memphis was very long and exhausting(physically and emotionally) to say the least. The first few days were filled with lots of tests and the last three were spent in the Medicine Room receiving chemotherapy. Jay did fairly well with the testing and then his attitude changed when we started treatment. During the six months we lived in Memphis, we spent many hours upon hours in the Medicine Room receiving treatments. Needless to say, Jay doesn’t have many good memories of the Medicine Room....I mean the name even sounds kinda scary don’t ya think? Now, MRI and the Recovery Room is a different story...he gets his sleepy medicine, goes flying in the spaceship, and then awakes to his beautiful nurses who wait on him like he is a celebrity. Whatever Jay wants, Jay gets...warm blankets, cookies, sprite and of course lots of lovin’ from Mrs. Terri and Mrs. Rita:) In the Medicine Room on the other hand, he only gets medicine that makes him feel yucky, he gets stuck in a room the size of a closet for hours with a VCR that doesn’t work, its like pulling teeth to get a toy out of the toy closet, everyone keeps calling him William(his first name)instead of Baby Jay, and the nurses...well,lets just say they don't hold a candle to the sedation nurses. So Friday when I told him that we had to go to Medicine Room, he wasn’t very happy....actually he was scared. Right after the nurse hooked him up to the IV, Jay buried his head into his bear and sobbed quietly. Those of you that know Jay well, know that he is very tough and rarely shows his emotions in front of others(just like a man). When I asked him what was wrong he whispered that he wanted to go home. My motherly instinct kicked in immediately and I came very close to scooping Jay up and running like a mad woman...I mean hasn’t he been through enough?!?! Well, of course I have more sense than that and we made it through the three days of chemo without too much drama on my part...well, I did get a little nutty when they put us in a dirty room where a procedure had just taken place...GROSS!

This past week was very tough. Signing the consents, hearing the results of the latest MRI, beginning treatment and knowing all the potential side affects, trying to explain to my almost four year old why he is getting medicine again, and then on top of all that, being reminded that medically our treatment team sees little hope for Jay. Many times during my frustration, I found myself questioning God. “Lord, I don’t understand why this is happening again. I don’t understand how you can allow such sorrow and suffering to devastate our lives. I don’t understand why we have not received the healing that Jay so desperately needs.” As I would plead with God over and over again, He reminded me that He does not expect me to understand. He simply expects me to trust and believe in Him. In John 11:40 Jesus says, “Did I not tell you that if you believed, you will see the glory of God?” Well, Jason and I are continuing to trust. We are continuing to believe. Some days are definitely harder than others, but we know that God has a mighty plan for Jay and one day we will see the glory of God.

The “bright spot” of our trip was getting to visit with several of our dear St. Jude friends. It gave Jay and I something to look forward to each day. We were able to spend time with Easton, Bret, Sclader, and we were able to see our friend Madison(who looks awesome!). I truly believe that God orchestrated these people to be there with us and for us...it meant more to us than they will ever know.

Please continue to pray for all of our friends that have touched our lives along this journey. Especially Aaron(il/aarondhunter), Bret(mo/bretbrady), and Ben(Ben-story.com).

As always, thank you for your encouraging words, support and most of all prayers. We love you!

Love,
Cindy

Sunday, December 5, 2004 9:07 PM CST

The boys and I returned home safely tonight. It is such a comfort to be home with our family. Thank you God.

Jay is beginning to experience some sickness from the chemo that he has received over the past few days. Hopefully a good night sleep and some lovin' from his sister and daddy will help him to feel better soon.

Thank you for your prayers and encouraging messages. You truly helped us to get through this past week. I will update more tomorrow.

Love,
Cindy

Thursday, December 2, 2004 8:44 PM CST

The MRI showed today that the growth is in fact a tumor. We found out that the tumor is actually on top of his head rather than near the original sight. This is good and bad news. The good news is that the original tumor bed is dead. The bad news is that the cancer has proven to spread. The tumor is 5mm now. Originally, we were told that the tumor was 2mm, when it was actually 3-4mm in size. It has grown slightly in 3 weeks.

Jay will begin chemo in the A.M.. He will get chemo tomorrow, Saturday and Sunday A.M.. Sunday P.M. they will be driving home. We will be home until December 27th. Jay is due back for chemo Dec 28-30. We will return in mid-January for an MRI. The results of this MRI will determine what we do next. The chemo Jay will be getting tomorrow and in the coming weeks has just been recently FDA-approved. Jay will be one of the first patients to be receiving this new chemo.

Cindy and I are still waiting patiently for God to perform His miracle on Jay. We know that if this new chemo works it is because God has allowed it to work. Our faith is not waivering just because the MRI did not turn out favorably. God made Jay and loves him more than we do. God is in control of this situation and knows exactly how He is going to use Jay to glorify His name.

Thank you all for continuing to pray with us. Please pray without ceasing for Jay and us. This new battle is just beginning. Only through the power of the Holy Spirit can we fight this beast. We will never give up, never concede or ever give Satan the pleasure of defeat.

In His Grip, Jason

Sunday, November 28, 2004 9:28 PM CST

UPDATE 12/1 - Jay should be on the MRI table at 1:00 EST. Please pray boldly with us that the doctor calls us in to report "spontaneous remission".

UPDATE 11/30****We have arrived safely to Memphis. Jay is feeling great and is looking forward to visiting with several of his St. Jude buddies...We have already seen our dear sweet friend Easton. Please pray for clean scans for Easton as he has his MRI tomorrow. His webpage is caringbridge.org/fl/easton

Julie-I am looking forward to seeing you on Thursday!:)

I will update again soon!

Well we have a slight change in plans for this upcoming week. We are not leaving until Tuesday to travel to Memphis. Jay has labs and hearing test on Wednesday, a MRI on Thursday, Chemo on Friday, Saturday, and Sunday, and then we are coming home on Monday. We will be home for three weeks, and then return to St. Jude shortly after Christmas for another round of Chemo. Mid-January we will re-evaluate and go from there.

This past Wednesday, we were finally able to discuss Jay’s treatment plan with Dr. Gajjar. Many questions were asked, and many were answered....just not the answers we wanted to hear. Before I go any further, I want to share with you a passage from Romans that God placed on my heart last February during Jay’s seizures. “Against all hope, Abraham in hope believed”(Romans 4:18). At that time, Jay’s cancer was attacking his brain and he was experiencing multiple seizures. We spent 14 days in the ICU trying to get them under control. Jay was unresponsive and slept for most of those two weeks and even stopped breathing several times. Needless to say, my faith was shaken and crushed...I began to feel helpless and hopeless. I remember looking into the doctor’s and nurse’s eyes seeking reassurance that they still had hope....that they still had confidence that Jay could be healed. If they believed that Jay could still beat this beast, then I could still have hope. But the only reassurance and hope that Dr. Gajjar gave me was Radiation. With Radiation on the radar screen, Jay’s prognosis never changed...the medical community still thought that Jay had a chance. Then after 6 ½ weeks of radiation, 12 medications, a trach, a feeding tube, and burns all over his little body...the cancer was gone. A miracle? Yes, it was to us....and it was a miracle to our family, friends and church. We knew with all our heart that God had healed him. BUT medically speaking, the radiation got the credit. The GREAT Dr. Merchant(our Radiation Oncologist) was placed on the pedestal....not God.
Okay, so the cancer is back. Now what? What are Jay’s chances of beating the beast again? Radiation is no longer an option and Chemo never touched his cancer. These are similar questions that we asked Dr. Gajjar this past Wednesday night. All I can say is that medically and scientifically speaking, we are “against all hope”. Based on Jay’s track record, Dr. Gajjar does not think that Chemo is going to cure Jay. If at best, he feels that it may only buy us time...”precious time” were his exact words. When asked what he means by precious time, he gave us a time frame of 6-24 months. I can’t say that I was completely shocked by any of this. It is definitely not what Jason and I wanted to hear, but God has been preparing us for this moment for a long time....and we are just not conceding to it. With all due respect to Dr. Gajjar, it ultimately doesn’t matter what he thinks. What matters is what God thinks. I am not a statistic, you are not a statistic, and Jay will not be a statistic. I am placing my hope in the sovereign God who defies human statistics, and I have the confidence that Jay can defy the odds. Jason and I are finally to a place in our faith that we are no longer looking for reassurance in our medical team...we are trusting God wholeheartedly. “Against all hope, in hope we believe.” I believe that God is not done yet with Jay...I believe that Jay will continue to touch countless lives with his remarkable story... I believe that God still preforms miraculous miracles and that Dr. Gajjar one day may be writing “spontaneous remission”(medical term for miracle)on Jay’s file...I BELIEVE-Because-Emmanuel-lives-I-Expect-Victory-Every-Time!(thanks Donna) So I ask all of you, ”Do you believe that I(God)am able to do this?”(Matthew 9:28) Will you believe with Jason and I that God is supremely capable of working the miraculous in Jay’s life? Do you believe in modern day miracles?
I am going to close with this challenge. I am asking all of you to pray...pray BIG...Pray BOLDLY...pray for a miracle....and this time God will get ALL the glory!

“Be strong, take heart, all you who hope in the Lord.”(Psalm 31:24)

I will update again soon from Memphis.

Love,
Cindy

Please continue to pray for all our friends who are also in need of miracles...especially Aaron, Bret, Ben, Ryan, and Sclader. St. Jude could use some "spontaneous remissions" don't you think?:)

Wednesday, November 24, 2004 9:36 AM CST

*****11/26 NEW PHOTOS IN ALBUM*****

NEWS FLASH****We finally got somewhat of a plan. Jay will start Chemotherapy sometime next week at St. Jude. We arrive on Monday the 29th and are planning on being there for at least a week. Still don't have all the details, but I at least have a time frame now. That I am thankful for:)

Happy Thanksgiving!

This is an article written by Adrain Rogers(his church is in Memphis)that I came across during my devotional time this morning. I was convicted while reading it because lately I have failed miserably at the “in everything give thanks” department. Don’t get me wrong, I thank God everyday for His many blessings...my husband, children, family, friends and so forth...but instead of being humbly grateful for ALL things, I have done my fair share of groveling and complaining about a lot of things. Needless to say, I could use an attitude adjustment:)

How To Let The Attitude Of Gratitude Change Your Life
by: Adrian Rogers

Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ. - Ephesians 5:20
Let me ask you a question. Do you have difficulty with bitterness, selfishness, self pity, negativism, or pride? An attitude of gratitude can change those things and literally transform your life.
There are four levels of living. People in the lowest level constantly complain. These folks are always griping and complaining. Rather than being humbly grateful, they're grumbly hateful.
The second level is just a tad higher. These are not people who are constantly complaining; they just never give thanks for anything. They take things for granted. The third level are those who thank God for the obvious blessings, when things are going good and everything is fine.
But the fourth level, the highest level, are those who give thanks always for all things. This is the attitude that will change your life.
Let me give you five principles that will help you achieve the highest level.

Our Gratitude is Proper

Anything good that you have has come from God. You didn't get it by luck, ingenuity, hard work, wit, or wisdom. It is proper to thank God for it.
Our Gratitude is to Be Perpetual

You're not just simply to be thankful one day a year. One day is not long enough to thank God for all that He's given you. His blessings come daily. Psalm 68:19 says, "Blessed be the Lord, Who daily loadeth us with benefits..." Every day God has brand-new blessings for you, and every day ought to find you thanking God. Every prayer that you pray ought to be salted with thanks.

Our Gratitude is to Be Pervasive

In everything give thanks. Not in some things, but in all things. Every thing, every area of life is to be a the subject of thanksgiving. There’s so much to be thankful for.
• Spiritual things - If you didn't have anything else but Jesus, you would have enough to praise God for all eternity.
• Simple things – You should be thankful for your families, health, food, and even a glass of water. Thank God for the simple things.
• Sorrowful things – You can even be thankful for the heartaches, the pains, and the sufferings. Romans 8:28 says, "…All things work together for good…" That is, the thing itself is not good, but it is God Who is working all things together for good.
Do you want to live on the highest level of life? Cultivate the attitude of gratitude always and in all things. I don't care how bad, difficult, dark, or mysterious things get; take the ultimate step of faith and say, "God, You're greater than this, and I thank You." You say, "Well, I don't feel like thanking Him." Don't thank Him by feeling; thank Him by faith. You're not told to feel thankful but to be thankful. Nothing shows your faith in the absolute sovereignty of God more than just simply thanking God in every situation.

Our Gratitude Will Be Pleasurable

Thankful people are happy people. "Well," you say, "if I had something to be thankful for, I'd be happy." You have missed the point! You do have something to be thankful for. You have life. You have Christ. You may say, "But my circumstance are not good." The apostle Paul was in prison when he wrote this, yet he was rejoicing in the Lord. Gratefulness turned his prison to a palace, but ungratefulness can turn your palace to a prison. I'm telling you, the attitude of gratitude will change your life.

Our Gratitude Is Possible

Before we are told to give thanks in verse twenty, verse eighteen says, "…Be filled with the Spirit." Living with gratitude is not a human way to live, not a natural way to live – it's supernatural. And this kind of thankfulness only comes out of a vital relationship with the Lord Jesus Christ.
The Holy Spirit is the substance of it, the source of it, and the strength of it. We are to be filled with the Spirit, and we are to be giving thanks. And that's the only way we can do it.
Whether you're in a prison, as Paul was, or enjoying your Thanksgiving Day dinner, you can praise God. I'm telling you it will change your life. Bitterness, fear, self pity, ungratefulness, and negativism will go out of your life if you will practice the grace of gratitude. It’s possible when you let the Holy Spirit fill you.

When I'm feeling down about our situation or a little(okay, a lot) like a brat, I often sense God speaking to my heart, "Name 'em, child"(as Beth Moore would say). I don't even have to ask what He means. He means start naming the thousands of ways He has shown His goodness to me. God has had such mercy on my life, I ought to be among the most grateful people on the earth, and that's exactly what I want to be. I love how Adrian says, “your not told to FEEL thankful, but to BE thankful.” There are many days that I don’t feel very thankful because I am just feeling sorry for myself. But if I focus on God’s many, many blessings of grace and mercy in my life I can adjust my attitude to gratitude.

Jason and I are so thankful for all of you. You mean the world to us. I will also ask that you continue to pray for our many friends across this country who are also fighting this battle. Especially Aaron Hunter and his family. He has become very weak and the doctor’s seem to think that he is in his last days. His webpage is: caringbridge.org/il/aarondhunter.

God bless!

Being thankful in ALL things,
Cindy

Friday, November 19, 2004 7:52 PM CST

****Updated 11/23 9pm****

Still waiting....You think this is another one of those lessons on patience??? The nurse never called me...I had to call her late this afternoon. And guess what?!? She STILL didn’t have any answers!!!! We have emailed Dr. Gajjar and have requested that he call us at home tonight. This is really getting ridiculous. All I want to know is how long should we expect to be in Memphis next week. We need to work out a plan for the kids, the pets, Jason’s job, Kaitlyn’s school, etc.... Please forgive my temper tantrum...Jason and I are extremely frustrated right now. I will keep you posted.

***UDATED 11/22***
We were mistaken(or given the wrong info)about Dr. Gajjar's return to Memphis. Today was his first day back at St. Jude, not last Friday. I spoke with him this afternoon, and he did confirm that this new growth is definitely tumor. However, he still has not come up with a treatment plan. I did get the feeling that we are looking at no surgery(because it is so small)and some type of chemotherapy. I told Dr. Gajjar that we need to know how long he is expecting us to be in Memphis next week for planning purposes on our part(we do have a life outside of St. Jude!). Our nurse is suppose to call us tomorrow to let us know what to expect(or I will be calling her). I will update again sometime tomorrow evening. Thank you all for your continue support and prayers.****

We still do not know anything regarding what our next step is going to be. Dr. Gajjar returns to Memphis today but I doubt we actually speak with him until Monday. I promise that you will be the first to know when we learn anything new. As for now, Jason and I are hanging in there. We definitely have been on an emotional roller coaster this past week....we go from being weepy to furious to just plain numb in a matter of minutes. The kids are also feeling the tension and have had their share of meltdowns. The not knowing and only speculating what might be next is wearing on us. If we just had a game plan I think...no, I know we would feel a little better. I keep reminding myself that God is STILL in control and that He does have a game plan...He just hasn’t told me about it yet!:) He saw this coming and has gone before us to clear the way. Jason and I do find comfort in the fact that there isn’t a single time in our lives that He is not in absolute control. There isn’t a moment that He isn’t guiding us through our storms. Jesus always knows exactly where we are and where we are headed. Sunday’s sermon really spoke to my heart on this subject. Dan Wetzel who is a well known basketball entertainer and Christian was our guest speaker. His sermon was from Matthew 14 where the disciples were caught in a storm at sea and their fear was overcome by the presence of Jesus. At first they are horrified by the winds, the rain and the waves....then they see Jesus. Their fear was replaced with hope, peace and courage. Jesus was actually there the entire time....but they allowed the storm to distract them from seeing Him. I left the service saying, “Okay God, I hear you...I know you are talking to me.” But God wasn’t through with getting His point across to me...He knows that I can be a little slow sometimes:) That night, I was going through some old devotionals and came across a clipping from a devotional that my dear cousin Roslyn had sent to me last December. I received it right before we discovered that 10 weeks of Chemo had not been effective and Jay’s tumor was growing back. Well, can you guess what the devotional was about? The title is, “The Storms of Life: God’s Provision” Matthew 14:22-34. I must share it with you.

“At some point in our lives, we will hit great turbulence. We may have already experienced some and can see more is to come. Our situation may also be so serious that we think to ourselves, How am I going to make it through this?

Consider the time the disciples found themselves in a storm on the Sea of Galilee. Scripture tells us the boat was being battered by the waves and the wind was against them. In the midst of this, the disciples thought they saw a ghost walking toward them. These grown men, some of whom were seasoned fisherman, cried out in fear. They remained afraid until they became aware that it was Jesus walking toward them. What happened when they recognized it was Jesus? They received a sense of comfort. “Ah, it’s Jesus. We aren’t helpless and alone anymore. He is here.” They received courage to face their trial. Peter had courage to obey Jesus and step out of the boat in the midst of the storm. The men also received confidence for their future because they realized that Jesus’ presence could not be driven away by the severe winds.

What waves and winds are battering you? Are you afraid? Ask the Lord to reveal His presence in your situation and then fill your senses with that awareness. Close your eyes and picture Him at your side, holding you tightly. Let your ears hear Him whisper reassurance and love. Fill your mind with the knowledge of His promises, and draw upon the strength, comfort and courage He offers.”

Sunday was a real eye opener for me. God was reminding me that even through our fears and doubts He has not abandoned us. Like Peter, I can close my eyes and see Jesus with His outstretched hand calling ...”step out of the boat Cindy and come to me. I am here.”

Thank you for your prayers. We will post again as soon as we hear something.

Stay tuned...God is not done with us yet!

Love,
Cindy

Saturday, November 13, 2004 10:27 AM CST

Dr. Gajjar was contacted yesterday about Jay. He wants us in Memphis on November 30th to discuss what our next step in treatment will be. He did say that he is not recommending surgery at this point, but the surgeons will still meet Wednesday to give their opinion. There are still several chemo treatments available for Jay. One of those being high dose chemo with stem cell rescue(a bone marrow transplant using his own bone marrow). Jay has enough stem cells harvest for several transplants. This we are very thankful for.

I also have not had a chance to share with you that despite the MRI findings, everyone at St. Jude was so pleased with how well Jay is doing. He has gained 4lbs and has grown an inch, he tested at a 5 ½ year old level with his speech, his Physical Therapist was amazed at the progress he has made with his balance and strength and his Thyroid and Adrenalin Glands tested normal. All of this is such a blessing and a reminder that God has His hand on Jay. I had also requested that Jay see the eye doctor while we were there. Jason and I have noticed that Jay is becoming more dependent on using his right eye. He will turn his head all the way to the left when he is trying to focus on something. The testing showed that he has vision lost and astigmatism in both eyes. Not only is the left one significantly worse than the right, but it is also developing lazy eye and has a weak muscle. Corrective surgery for the weak muscle may be an option later down the road. Needless to say, Jay has been fitted for the cutest pair of blue wire rim glasses. He is so excited and Kaitlyn is so jealous. When we told Kaitlyn that Jay needs glasses she said, “That is not fair! I have wanted glasses my whole life!” Due to the special lens he needs, the glasses will not be ready until next week. Please pray that Jay will adjust to wearing them quickly. I just know that he is going to be amazed with what he can see with his glasses on! There is no telling how long he has had vision lost...possible since surgery over a year ago!

These next two weeks at home will be cherished. We are already planning how we are going to spend our time together. This morning Santa made an early stop at our house to drop off two very heavy gifts that just weren’t going to fit in his sleigh on Christmas Eve. Kaitlyn got a brand new Barbie bike and Jay received a John Deere Gator(we will have to paint it yellow and decorate it with CAT stickers of course:) Jay has been wanting a Gator ever since his friend Hunter got one for Christmas last year. When asked what Santa was bring him this year, Jay always replies with confidence, “Santa is making me a Gator!” Since we are unsure where we will be for Christmas, Jason and I decided(on a whim)to buy Jay his Gator and Kaitlyn her new bike. So the search was on...last night we drove all over town hunting for a Gator. We made visits to Toys-R-Us, two Walmarts and called a third one. Finally at our last stop(way past our bedtime)we were told that there might be one on the 11:00 truck that was unloading. This very kind Walmart employee went to the back to check for us. Twenty minutes later she came rolling down the isle with the ONLY Gator in Macon! It was like winning the lotto! We finally arrived home close to Midnight, and Santa’s head elf stayed up all night putting together a bike and a Gator. To hear the giggles and to see the looks on Kaitlyn and Jay’s faces this morning, made the lack of sleep well worth it!

Thank you all so very much for your support, your wonderful messages in the guestbook, your emails and phone calls, and especially your prayers. Knowing that there are so many people going to bat with us once again gives us strength. Please keep praying for Jay and for all of his friends who are fighting for their lives. I will update again soon.

Love,
Cindy

“Do you believe that I am able to do this?” (Matthew 9:28) We have a God who delights in impossibilities and who asks, “Is anything too hard for me?” (Jer. 32:27)

Thursday, November 11, 2004 8:43 PM CST

The official MRI results were not at all what we had expected. We are saddened to report that Jay has a new tumor growth near the original tumor site. The Radiologist is saying that this new growth is very tiny and measures to be about 2mm. The Neurosurgeons at St. Jude will meet next Wednesday to determine if surgery will be an option. Jay’s oncologist Dr. Gajjar is out of the country and is not due back until next week. We plan to travel back to Memphis as soon as Dr. Gajjar returns to discuss what will be our next step. Please pray for guidance and wisdom for all of Jay’s treatment team. They have some very important decisions to make.

Right now I am at a lost for words. Once again, we have been thrown back onto the battlefield with this horrific beast. We have been knocked down, but we are ready to fight. We are still trusting God with all of this.

Please continue to pray for our family and for our sweet baby Jay. Also, please remember to prayer for all of our St. Jude friends. Ben Bowen and his family also need our immediate prayers. You can read an update on Ben at his website: bens-story.com. I will update again soon.

Love,
Cindy

Wednesday, November 10, 2004 10:55 PM CST

We just arrived home and received a good preliminary report on the MRI. Dr. Merchant, Jay's radiology oncologist, looked at the scans and said they were clear. The radiologist who does the official read will look at the scans tonight. We should know officially tomorrow. We will update with more details in the coming days. Thanks again for all of your prayers.

In His Love, Jason

Tuesday, November 9, 2004 3:06 PM CST

Please join us in thanking God for good results so far. Jay's spinal fluid was negative. This is usually a good "tip" to what to expect in the MRI. Although we will leave not knowing the results of the MRI, we are very relieved to know that the spinal fluid is clear. We look forward to sharing more good news later.

In His Grip, Jason

Monday, November 8, 2004 7:03 PM CST

We have safely made our way to Memphis. Tomorrow we have appointments all day. Wednesday A.M. Jay has his MRI. We will be done after he gets out of recovery and will be headed back to Macon. Unfortunately, we will not know the results until Thursday sometime. We thank all who prayed for us and with us before we left. We look forward to sharing answered prayers with everyone as soon as possible.

In His Grip, Jason

Monday, November 1, 2004 3:40 PM CST

This past Saturday and Sunday was consumed with Halloween activities. Kaitlyn, Jay and Tanner...oh excuse me, I mean Miss Diva, Buzz Lightyear, and the Ferocious Lion had a blast going Trick-or-Treating, riding on a hay ride, visiting a spooky trail, and playing games at a Fall Festival. Needless to say we all crashed last night from exhaustion and peacefully slipped into a sugar-induced-coma. Buzz Lightyear was ready to beam me to infinity-and-beyond as I was dragging him out of bed this morning...it was not a pretty sight! I will try to post some Halloween pictures of the kids this week. They were too cute!

Our insanity will continue on into this week with many meetings and appointments but most importantly planning THE TAN MAN’s 1st Birthday! Tanner Dean will be one year old on the 7th. Oh yeah, Jason and I have birthday’s this week too( the 3rd and the 4th)...but that is depressing since we are trying to forget that we are getting older! We are having a GA party(go Dawgs!)on Saturday for Tan....yes, my children are born chanting “GOOOODAWGS! SICKEM’!” You know when a couple marries in the Catholic Church you have to sign something that says you will raise your children Catholic? Well, when I married Jason I had to pinky swear that I would raise our children to be Bulldog fans! I have to say that I have done my best...I dress them in red and black, teach them the cheers, and have flash cards of all the players. Kaitlyn has started saving her allowance to buy game tickets for our family. She is making her daddy proud! Like father, like son, Jay looks forward to every Georgia game. I’m not sure what he likes more...the game or the Hooters wings his daddy feeds him...MEN! I am afraid that the our youngest(and biggest)is going to have it the toughest. Not only is he expected to be a fan, but Jason already has Tanner training to be a football player. Tanner absolutely loves to play ball. He would sit for hours and throw a ball back and forth. The child has more footballs than he know what to do with! He is definitely going to be the athletic one in the family...so a GA party seems fitting don’t ya think? Jason thinks so:)

We are one week away from heading back to Memphis. This week will be a week full of many blessings with our birthdays, but it will also be a week of mixed emotions. On one hand we absolutely dread going but we also look forward to seeing some of our friends. Then as this week progresses, we will be ready to get there and get it over with. It will be such a relief to come home with good news for the holidays. We spent Thanksgiving last year at the Ronald McDonald House in Memphis. Jay had just received chemo that morning and was not a happy camper. I remember sitting there at this table with total strangers, holding a sick child, staring at my cold turkey and longing to be home(and for my NaNa’s dressing!). I had so many things that I was thankful for, but at that very moment I was just feeling sorry for myself. Right before Christmas, was when we were given the news that Jay’s cancer had returned after 10 weeks of treatment. Needless to say, it was hard to enjoy Christmas with that hanging over our heads. Jason and I spent the week anxiously counting down the days so we could get Jay back to St. Jude to begin a new treatment. Time was of the essence. I hope and pray that this holiday season will be different. Jay will be home(thank you God), our family will be together, and we will be praising God for yet another clean check-up.

Not only am I asking you all to pray for Jay and our family, but I am also asking you to please pray for our dear St. Jude friends. Aaron and Big Ben are home on Hospice, Sclader is home on oxygen for damage to his lungs caused by radiation, and our sweet little buddy Bret has relapsed for a second time. In July Bret’s scan were clean. Then just last week, only three months later EIGHT tumors have been found on his brain and spine. The doctors have told Bret’s parents that they can now only buy time...there will be no cure. We must pray and believe that the Almighty Physician can heal Bret if it is His will. Our trust is in Him. Please, Please stop by Bret's webpage and let his parents know that you are praying for them. They could use some encouragement right now. There is a link to Bret’s page at the bottom of this page. Or you can copy and paste: caringbridge.org/mo/bretbrady

We love all of you and thank you again for your prayers!

Love,
Cindy

Sunday, October 17, 2004 8:47 PM CDT

****NEW PHOTOS IN ALBUM****

We have busy, busy, busy....so busy that I have failed to do an update. I apologize. I am working on part II of Jay’s story and I promise to have it up very soon....but for now I just thought I would let you all know how Jay is doing.

We are six months post-treatment and are still amazed at the progress Jay has made. He continues to enjoy his weekly physical therapy sessions and his gymnastics class. One of his biggest accomplishments is that he is now able to do a forward roll! He is so proud of himself! We have also been working with Jay on his coloring, relearning his letters and numbers, and potty training. After brain surgery, Jay pretty much regressed back to infancy in many areas...physically and mentally. It may take years for him to catch-up, but we are just so thankful for little achievements that we are now seeing! Just last week he said the blessing all by himself and yesterday I heard him singing the ABC’s! He is also ALMOST potty trained...for the second time!!! We are still dealing with a few accidents here and there, but for the most part he has caught on. It does my heart so good to see and hear Jay do these things that he was able to do back in BC(before cancer). I have often wondered if he would be able to regain what was lost. Brain surgery, 4 months of chemotherapy, and then 6 ½ weeks of high dose radiation to his brain and spine...yes, the goal was to kill the cancer but at what cost? The what ifs, could be and the maybes were so overwhelming that I tried to avoid even thinking about such. We could only trust in God and pray for His protection over Jay. We were at battle and our goal was to walk away with a big V written on Jay’s chest no matter what the consequences. More times then I can count, the doctors would sit us down and go over all the horrific side effects and late effects of the treatments and then ask us to sign the dotted line. My only question during those times was “Will it kill this beast called cancer? Possibly? There is a good chance? Then sign us up!” I won’t go as far to say that I didn’t worry about the damage that the chemotherapy and radiation could cause, because like any parent it did frighten me a little....but my focus was on the present battle before us and we would deal with those struggles as they come.

So, here we are a year later. We have claimed victory only by God’s mercy over the beast...but the battle is far from over. Not only do we live feeling like we are one MRI away from being thrown back onto the battlefield, but we are now face-to-face with the possible late-effects of surgery and treatment. Hearing and vision lost, hormone deficiencies, growing problems, learning disabilities, second cancers....and the list goes on. But again, we will deal with them as they come. We can only trust in God and believe that through Him we are “more than conquerors”(Rom. 8:37). Last week our associate pastor preached on “taking up the armor of God”. She said that as Christians it is our faithful duty to arm ourselves everyday with the sword of the Spirit, which is the word of God and with prayer. The verse she was referring to is Ephesians 6:10-18. "Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand. Stand therefore, having girded your waist with truth, having put on the breastplate of righteousness, and having shod your feet with the preparation of the gospel of peace; above all, taking the shield of faith with which you will be able to quench all the fiery darts of the wicked one.
"And take the helmet of salvation, and the sword of the Spirit, which is the word of God; praying always with all prayer and supplication in the Spirit, being watchful to this end with all perseverance and supplication for all the saints...."

It reminded me of what Jason and I need to be doing everyday...putting on the armor of God by studying his word and through prayer. This is how we continue to have faith, dare to believe and stand firm in God’s promises.
“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed” (2 Cor. 4:8-10).

We return to Memphis in just a few weeks. Jay is scheduled to have a MRI and Spinal Tap on Tuesday November 9th. Please keep us in your prayers as this trip approaches. As you can imagine, it is a very stressful time on all of us. Also, please remember our precious St. Jude friends. There are many who continue on the battlefield in hopes for victory.

Love,
Cindy

Jay’s friends who need your prayers:
caringbridge.org/ky/louie
caringbridge.org/tn/hanna
bens-story.com
caringbridge.org/la/zoie
caringbridge.org/va/madison
caringbridge.org/fl/tori
caringbridge.org/fl/easton
caringbridge.org/il/travisman
www.caringbridge.org/il/aarondhunter
caringbridge.org/ /jillsjourney
caringbridge.org/ga/kendrie
Kenneth Myers
Garrett Starr
Sclader Heindl

Thursday, September 16, 2004 2:54 PM CDT

JUST A 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!

One year ago....

“Gaskins’, stay on your toes. Satan will tried his best to separate all of you from me, like chaff from wheat. I have prayed for you in particular that you not give in or give out. When you have come through the time of testing, turn to your companions and strengthen them”(Luke 22:31-33; The Message).

September 2003....we had recently moved into a new home, Jason’s job was doing well, my new business as a Personal Trainer was off to a great start, we had two healthy children who were starting pre-school, and I was eight months pregnant with number three. Life was good. God had truly blessed us. Several months before, Jason and I had a talk about what a clumsy little boy Jay could be. The ongoing joke at our house was that Jay would trip over a crumb if it got in his way. Jason had also noticed that he had lots of trouble using his left hand. Well of course! The boy is very right handed, not ambidextrous! Being the first little boy in our family, we only had little Miss Kaitlyn Mae(A.K.A. Miss Prissy) to compare him too. Girls are graceful, boys are not. Right? So we blew it off as a “boy thing” and moved on. We settled into our new house in July. The biggest difference between the old house and the new house were the stairs...the VERY, defying every building code, steep wooden stairs. This was a new experience for Kaitlyn and Jay, but as you probably expected, Jay had a very difficult time mastering them. I was scared to death every time he went up and down them. At the beginning of August my fear of those stairs became a reality. Jay lost his balance and tumbled down them. He tumbled from the very top and landed on his head at the bottom. Of course we called the emergency pediatric number and the nurse told us what to watch for. Other than some bruises, Jay seemed fine. One month later, right before Labor day, Jay and Kaitlyn started pre-school. Kaitlyn was in 4K and Jay was in 2K. They attended three days a week for a few hours per day. Jay’s teacher, Mrs. Henry, had been there awhile and had lots of experience with little ones. Jason and I were very pleased that Jay was in her class. One afternoon during pick-up, Mrs. Henry pulled me to the side. She asked me if Jay had balance problems. “What? Balance problems? You mean clumsy? You mean his just not paying attention while he is walking? Aren’t all little boys like that?” Mrs. Henry seemed concerned and told me that Jay was having difficulty going from sitting to standing without stumbling, he was unsteady walking across the room and he had fallen several times trying to run. I saw a HUGE RED FLAG! This must not be normal if a teacher who has worked with children for many years was concerned about Jay’s walking. It was like the Holy Spirit was shouting, “SOMETHING IS WRONG!” I walked out of the school in a state of panic. I cried all the way home. I kept wondering, “what in the world is wrong with you?!? Will you please pull it together? This is definitely hormonal. I am being ridiculous. Jay is fine.” But there was this little voice inside of me saying, “It’s not okay. Something is terribly wrong and you must call the doctor immediately.” Call it what you want...a coincidence or mothers intuition. I call it a blessing. A message from God. “Cindy, Jay needs medical attention immediately. You must act NOW! “ I called Dr. Vernon as soon as I arrived home. We were sitting in his office hours later.

After a complete neurological examine and listening to Jason and I ramble about our concerns, he still didn’t have any answers. He said it could be a growth spurt, it could just be clumsiness, or maybe he injured himself from his fall down the stairs last month...a blood clot or maybe even a post-concussion. Dr. Vernon decided to order an MRI....the catch was that it would take 3-5 weeks to get an appointment. Well we went home not feeling any better about the situation. Blood clot?!? That sounded pretty serious. “Please Lord don’t let it be a blood clot.” That following weekend we decided to get away and went to Jason’s parent’s house. Friday, Jay was very sleepy and irritable. He sat around a lot and had little interest in playing. Saturday morning we noticed that Jay was sleeping later than usual. Mid-morning I went in to wake him up. He was still very irritable and obviously not wanting to get up. When he finally sat up in the bed he began complaining that his head hurt. I thought, “Do three year olds get headaches?” A few minutes later he was vomiting all over the bed. “Okay, this isn’t right.” For most of the day, Jay was puny. He complained of headaches and of being tried. He also wasn’t eating. Sunday morning was a replay of Saturday...not wanting to wake-up, headaches, vomiting, and no appetite. My gut(the Spirit again)was telling me that there was no way we could wait 3-5 weeks for an MRI. If we had to plant ourselves in the ER when we returned home, they were going to do an MRI! ASAP! I called the call center nurse Sunday evening threatening to take Jay to the ER. She tried to reason with me by saying, “even if you show up in the ER tonight, they are not going to schedule the MRI until tomorrow. Your best bet is to call your pediatrician in the morning and have him work you in.” After some thought and discussion, Jason and I agreed to wait and call Dr. Vernon’s office in the morning. We knew that he would be aggressive. That night, neither of us could sleep. We took turns getting up and checking on Jay throughout the night. I remember kneeling at Jay’s bed in the middle of the night and praying, “Please Lord, Please. Whatever this is make it go away!” At one point during that very long night, Jason stood over me while I was laying with Jay and said, “I have this sick feeling that our lives are about to change and there is no going back. We will never be the same again.”

Monday, September 15....Jay continued his morning trend. I got him up early with the anticipation of going to the doctor’s office. He insisted that I make him a bed on the couch so he could watch cartoons. Right after I got him settled, he sat up, complained of a headache...and you guessed it....he threw-up. While I was cleaning up the couch, Jay got down to walk over to his toys. When I looked up, I saw my 2 ½ year old son cruising the furniture like a baby learning to walk. He was so unsteady. I immediately called the nurse begging her to help me. I was trembling with fear as I recounted the past few days...”Whatever is wrong with my child is progressively getting worse. Jay needs to have an MRI very soon.” A few hours later we had a MRI appointment for the next morning....September 16th.

I remember that day so vividly....but it also seems like a lifetime ago. I remember the smell of the procedure room where we waited for several hours. I remember the hospital gown that swallowed up Jay’s little body. I remember having to hold my baby down while they stuck him to start an IV. Even back then Jay was so tough. He never made a sound....only tears streamed down his face. I remember whispering in his ear...”It is going to be okay baby. God is with you and he is going to make it okay.” The tech finally came for us and lead us to the MRI suite. Being pregnant, I was not allowed passed the big double doors. After kissing Jay’s sweet head, Jason took him in. They told us that the scan would take about 45 minutes. Jason and I clung to each other outside the observation room. We could see all the monitors, the doctors and the MRI techs. Jason was glued to the monitors, and I was studying everyone’s face. I thought, “well if they see anything alarming, surely I will be able to tell.” An hour went by. Jason said that he hadn’t seen anything(not that he really knew what he was looking for) and I told him that everyone seemed to be remaining calm. I almost caught myself breathing a sigh of relief....then the doctor walked out. He placed his hand on my shoulder and uttered a parents worst nightmare...our worst nightmare...”there is a lemon-size mass at the base of your sons brain. We have already contacted the Pediatric Neurosurgeon and we need to continue with the MRI to check for tumors in the spine.” Jason was able to hold it together and began asking questions...I on the other hand stood there repeating those words over and over in my head....”there is a mass in your sons brain...we have called in a Neurosurgeon...there could be tumors in his spine.” The room started spinning and I knew I was going to throw-up. I ran and locked myself in the bathroom. As I hung my head over the trash can I fell to my knees. “Why God? Why my baby!?! I was rapidly falling into the pit of despair. Sitting there on that bathroom floor and weeping uncontrollably, I felt my soul crying out to God, “Have Mercy Father, Have Mercy.”

I may not have heard it then, but I know now that Jesus was whispering, “My child, I have prayed for you...”

This is probably hard for many people to read. Believe me, it was difficult to write. Since the beginning of our journey, I have had this desire to recap our story...not just bits and pieces of it but the whole story. Along the way we have tried to keep everyone updated with those bits and pieces, but I truly feel that you just can’t appreciate what God has truly done for us without all the details...the good, the bad and the ugly. When could be a more appropriate time then the one year anniversary?

So this is our story...Baby Jay’s story...in the raw.

To be continued...

Sunday, September 12, 2004 7:31 PM CDT

*****Jay's story will be on at 5pm channel 13*****

Hello everyone!

Jay has completely recovered from his recent surgery. A few days ago, Jay was sitting on the couch making these awful grunting noises. When I questioned what he was doing he said, “I can’t whistle through my trach anymore!” So needless to say, the hole has finally closed up nicely and we have taken the bandage off. The site looks great! Jason and I couldn’t be more pleased. We return Wenesday to the ENT for another follow-up visit.

As many of you know(all you St. Jude parents) September is Childhood Cancer Awareness Month. This September is also the one year anniversary of Jay’s diagnosis and brain surgery. Jay was diagnosed on September 16th of 2003 and his tumor was removed two days later on the 18th. To bring attention and awareness to childhood cancer and to honor God’s mercy and gift of healing to Jay, our local television station(13 WMAZ) will be doing a story on our family tomorrow. The reporters will be here at 10AM and Jay’s debut will be tomorrow evening. I will post tomorrow the exact times for the locals. So stay tuned!!!:)

I will close now with a special prayer request. Our dear friends Aaron Hunter and his courageous mother Marilyn received discouraging news this past week. His doctors seem to be giving up hope and may send him home next week for good. They have stopped chemo due to the horrific side effects and will be doing scans the first of next week. Please pray for this family. Aaron’s website is caringbridge.org/il/aarondhunter.

Be looking out for another update on Thursday the 16th....the day our lives changed forever.

Love,
Cindy

Childhood Cancer Facts

*Each day, 46 children are diagnosed with cancer.

*One in 330 children will develop cancer by age 20.

*Although cure rates are steadily increasing, 35f children with cancer will die.

*Cancer remains the #1 disease killer of children.

Jay’s friends who need your prayers:
caringbridge.org/ky/louie
caringbridge.org/tn/hanna
bens-story.com
caringbridge.org/la/zoie
caringbridge.org/va/madison
caringbridge.org/fl/tori
caringbridge.org/fl/easton
caringbridge.org/il/travisman
www.caringbridge.org/il/aarondhunter
caringbridge.org/ /jillsjourney
Kenneth Myers
Garrett Starr
Sclader Heindl

Sunday, August 22, 2004 9:43 PM CDT

*****NEW PICTURES IN ALBUM*****

Jay is HOME and doing wonderful! He was discharged Wednesday morning. We are taking him to an Atlanta Braves game tonight compliments of the Children's Hospital. Jay is so excited! We praise God for such an amazing recovery! Who would of ever thought we would be heading to Atlanta three days after surgery?!? God is so good! We will update again soon!
***************************************

"You of little faith, why are you so afraid? Then he got up and rebuked the winds and it was completely calm"(Matthew 8:26).

CALM. The perfect word to describe today...you of little faith would have describe all of us. I guess we had prepared ourselves for the worst. Even Dr. Holmes said that the surgery went better than he expected. Jay only had a small spot of scar tissue that had to be removed, his airway is in excellent shape, and he only had to be intubated for the surgery that lasted a whole 30 minutes! An hour later, Jay was up and eating grits. By this afternoon he was making water guns out of syringes and spraying the nurses and doctors as they walked by his room. You would never know that he had surgery today. If Jay continues to do well through the night, Dr. Holmes may send us home tomorrow! Isn’t our God amazing?!? Jason and I praise Him for the better than “best case” day Jay has had. Thank you God, and thanks to all of you for your prayers.
***************************************
Tuesday is the BIG day! In Baby Jay’s words he will be saying, “BYE, BYE TRACH!” Thursday we had pre-op appointments with the ENT and the hospital. Everything is on schedule for us to be admitted Tuesday morning. We will not know the time of the surgery until Monday afternoon. I will post it as soon as I find out.

This past week was definitely an adventure for the Gaskins’ family. Alarm clock going off at 5:00AM, running 2 ½ miles(yes, I am insane), being showered and dressed before the kids get up, fixing a gourmet breakfast of Eggos and Cocoa Puffs, and then having all three kids dressed and out the door by 7:45AM has been quite a challenge(to say the least!). We were all running around here like kittens on catnip! It makes me tired just thinking about it. Kaitlyn had a great first week at school despite the Act of Congress it took to get her there. She loves her teachers and has made a few new friends. She is so cute in her little schoolgirl uniform! I will post a picture soon. Several people have asked if I am sad or if I cried about Kaitlyn starting Kindergarten. The answer is no. I am so excited for her because I know that she is going to enjoy it and do well. After missing out on all of 4K while I was in Memphis, I am looking forward to being involved with her. Last fall I wasn’t sure where I would be when Kaitlyn started Kindergarten. We were told then that Jay’s treatments could last for a year or more. I am so thankful that I am able to be here for this special time in her life.

Jay is also enjoying his one day a week Mother’s Morning Out program, gymnastics and pre-school choir. It is so heartwarming to see him involved in “normal” group activities. Before Jay got sick, he was always such a little social bug. He loved to play with other children. Since treatment, he tends to be withdrawn and seems overwhelmed at times in group settings. This was a little concerning to us not knowing how he would respond to his new activities , but so far, Jay has done well and is always asking when he is going back.

The Tan Man starting crawling this past week. He is all over the place and into everything. His most favorite thing to get into is the cat food and cat litter...YUCK! Tuesday he had his 9 month check-up. He is off the charts with his height and in the 95th percent with his weight. Yes, he is HUGE and has the biggest thunder thighs you’ve ever seen! Tanner is also saying MaMa and DaDa and laughs and smiles all the time. He has the cutest personality! Tanner Dean has been such a blessing to all of us. He is my little ray of sunshine:)

My verse of comfort as we have been preparing for Tuesday is Deuteronomy 31:8. “The Lord will go before you. He will be with you; he will not leave you or forget you.” Someone reminded me today that this surgery is nothing compared to everything else Jay has been through. Which also reminded me of how God has brought us this far and promises not to abandon us now. He has been and will always be a permanent presence in our lives.

Thank you again, again and again for all your support and prayers. We are so grateful for all that our family and friends continue to do for us. Ya’ll are awesome! Please pray for a successful surgery, good stats without the trach and that Jay will only have to be intubated for a short period of time.

We will update sometime Tuesday after surgery.

Love,
Cindy

Jay’s friends who need your prayers:
caringbridge.org/ky/louie
caringbridge.org/tn/hanna
bens-story.com
caringbridge.org/la/zoie
caringbridge.org/va/madison
caringbridge.org/fl/tori
caringbridge.org/fl/easton
caringbridge.org/il/travisman
www.caringbridge.org/il/aarondhunter
caringbridge.org/ /jillsjourney
Kenneth Myers
Garrett Starr
Sclader Heindl

Monday, August 9, 2004 3:51 PM CDT

***8/12/04 PRAYER NEEDED for Big Ben***
Ben is having brain surgery this morning. Please remember him and his family in your prayers. Bens-story.com

Praise God for CLEAN SCANS AND SPINAL FLUID!!!! Thank you, thank you for remembering Jay in your prayers. YOU are what keeps us going!

Overall, we had a good trip to Memphis. The week before we left, Jay was having a really tough time emotionally. He had numerous melt-downs over trivial stuff and was extremely clingy to Jason and I. Being so young, Jay has a hard time expressing how he is feeling. He knows he is being grumpy but can’t tell us why. We were getting very concerned about how he was going to response to being back at St. Jude. When we arrived Sunday we met our Mrs. Terry(one of our favorite nurses)and her precious family for dinner. Immediately, Jay’s attitude changed(and mine too)and he was as happy as he could be! He then began talking about all the people we were going to get to see. We are so thankful for the friendships we have made at St. Jude. Being able to spend some time with our dear friends gives us something to look forward. It helps to make the check-up trips bearable.

Monday was a wasted day to say the least! Somehow Jay was scheduled for the wrong sedation drugs for his MRI. In the past, Jay has had difficulty with IV Sedation and requires General Anesthesia(his own special sedation team:)) which is not uncommon for a child his age. Well, we decided to try the IV Sedation anyway and it did not work. Jay was given the max dose of three different sedation drugs and the little booger refused to fall asleep! They were also unable to do his spinal fluid test since the MRI was unsuccessful. So, we were sent away with a drunk three year old(who was seeing pink elephants)and everything was rescheduled for Tuesday.

Tuesday began at 7am with an EEG. The Tech did not see any seizure activity but we are still waiting on the Neurologist(who was on vacation) to read the results. Hopefully this week, we can start weaning Jay off his medication. He will then be completely drug free!!! Jay has been taking some type of medication since September. In March, he was up to TWELVE different medications a day. I had to have a chart to keep up with it. I am just in awe with how far God has brought us in just five months.

As most of you know, we were hoping(once again) that Jay would get his trach out. During our last visit in May, the ENT wanted us to downsize to a much smaller trach before he would remove it. If Jay tolerated the smaller size, the doctor assured us that he would feel comfortable with taking it out in August. Well, twenty minutes before our scheduled appointment, we are informed that the ENT clinic went on vacation without any notice to St. Jude. We were then given the choice to either extend our visit a week(yeah right!), or we could come back in several weeks and have it done then. Trying to keep my cool, I suggested that we just find an ENT back home and have the procedure done there. Dr. Gajjar did not particularly like the idea, but he went along with it. I am sure he was only trying to appease us....but we will take it! I met with Dr. Holmes here in Macon this morning, and Jay is scheduled for surgery on the 24th of August. I was totally unaware of how complicated this is actually going to be. The ENT in Memphis made it sound like you just take the trach out, scope him and monitor him overnight. Dr. Holmes said that he would have to do reconstructive surgery to Jay’s airway, possibly remove scar tissue from his trachea,intubate him for one to maybe several days, and then he would need to spend time in the PICU for monitoring. Jason and I were floored! What we thought was going to be so simple, has turned into major surgery. But we can only trust God and know that he has orchestrated this...the right place, the right time, the right doctor. Even though we have been so frustrated with the letdowns that Jay has experienced over getting his trach out, we are thankful that we can have the surgery done here with a reputable ENT. Jason and I have been called numerous times during this journey to “be still before the Lord and wait patiently for Him”(Psalms 37:7)...you would think that we would have learned by now:)

We are now finally home for a while....just in time for school and extra-curricular activities to crank up. Kaitlyn and Jay started gymnastics last week, Tanner and Jay will begin Mother’s Morning Out this week, Pre-School Choir starts next week and Kaitlyn’s big day is on the 17th.... KINDERGARTEN! Add all that to Physical Therapy twice a week and I believe we will be spending a lot of QT in the ole Suburban! We are actually starting to sound like a normal(whatever normal is) family with pre-schoolers...OH MY!!! Jason and I are so thankful to be HOME, together, and all under one roof. Busy? Yes. But no complaints here. We are forever grateful. I will take the title “Soccer Mom” over “Nurse Mom” any day!

Please remember Jay in your prayers for his upcoming surgery. I will post next week with more details. Also, please continue to pray for our St. Jude friends who are continuing to fight and for those families who have lost their children. Just this morning, a little girl named Hanna went to be with Jesus. Our hearts are breaking for her family. caringbridge.org/ms/hanna

Some of Jay’s friends who need your prayers:
bens-story.com(Tumor is bleeding)
caringbridge.org/la/zoie(with Jesus)
caringbridge.org/va/madison(HOME)
caringbridge.org/fl/tori(HOME)
caringbridge.org/fl/easton(Radiation)
caringbridge.org/il/travisman(CHEMO)
www.caringbridge.org/il/aarondhunter(STILL FIGHTING!!!)
caringbridge.org/mo/jillsjourney(CHEMO)
caringbridge.org/mo/bretbrady(HOME)
caringbridge.org/tn/ashleygarrett
(home in remission!)
Kenneth Myers(preparing for BMT)
Garrett Starr(Radiation)
Sclader Heindl(HOME)

Praise report: Gunnar Sterk is home and doing awesome!

Thanks again for all your support and prayers!

Love,
Cindy

Wednesday, August 4, 2004 6:12 PM CDT

Just a quick update tonight with a more detail update to follow. Jay's MRI and spinal fluid are clear. His EEG was normal also. Jay did not get the trach out, but that will be taken care of in the upcoming week in Macon.

Thank you all for your continued support and prayers!

In His Grip, Jason

Saturday, July 24, 2004 10:45 AM CDT

****Quick update****
I am trying to line up meals for the Sterks starting this Thursday the 29th through next Thursday, August 5th. If anyone is interested in helping with this please contact me ASAP. 474-0816

Thanks!

Hi to everyone!

July has definitely been an adventure for the Gaskins' family! Beginning the month off with our "world tour" we finally landed in the great land of Disney where we spent six fun filled days! Jay and Kaitlyn had the time of their lives and Tanner was a little trooper! Needless to say, Jason and I now need a vacation:) Give Kids the World Village provided us with passes to all the Disney Theme Parks, Universal Studios, and to Sea World. The kids got to see all their favorite characters (Buzz Lightyear being at the top of Jay's list), ride all their favorite rides, swim every evening at the village and they even ate ice cream for breakfast! A big THANK YOU to Jay's wish fairies Margie and Chelsea, to the Middle GA Make a Wish Foundation, and to Give Kids the World Village for making Jay's dream come true. It was so heart warming for Jason and I to see the sparkle in Jay's eyes!

Since we have been home Jay's progress with his balance and walking has taken off again. He has been doing very well during PT(he loves his therapist Ms. Kim)and has also been doing well at home riding his MANY ride on toys and attempting the stairs by himself. The stairs of course scare me and I will probably attempt to hold his hand down them until he is 18, but it does show that Jay is more confident in himself...that being a good thing! Kim seems to think that when he gets his trach out(hopefully next week)we should see even more improvements. I do believe that it will boost his self-esteem. Please pray that the ENT sees no reason for Jay to keep his trach any longer.

This past week has been a little challenging on the medical front. Jay has developed an infection in his Central Line that comes out of his chest. Thursday we spent ALL afternoon visiting the Children’s Hospital to see the ONLY doctor in Middle GA that has any knowledge about Hickman Lines. He ordered some blood work and cultures to be done and then St. Jude sent us back for even more cultures(my St. Jude friends know how culture happy our beloved hospital can be). Well, on our second trip back to the hospital I was talking on the phone to someone about how they wanted to take some blood from Jay’s arm. Jay figured out rather quickly what that meant and asked me if he had to get a shot. I told him yes, but only a little stick(yeah, right!). Jay took a moment to think about that one and then said, “Mommy if I am brave, will you take me to Toys R Us?” Of course the answer was ABSOLUTELY and I had no question that Jay would be brave. He is ALWAYS strong as nails. After Jay astonished the nurses with his bravery, I took him to Toys R Us. While we were shopping Jay noticed another little boy about his same age. He asked me, “Mommy why is that little boy here?” I said that I didn’t know and Jay said, “he must have been a brave boy too!” He never ceases to amaze me! The results of the cultures did show a skin infection at his line site, but there is no sign of infection in his blood stream. Thank you Jesus! St. Jude had our pediatrician prescribe antibiotics by mouth and an antibiotic cream. Hopefully we have caught it in the beginning stages and can nip it quickly.

Next Sunday, August 1st, we will be traveling to Memphis for Jay’s second check-up. Monday and Tuesday of that week Jay will have a MRI, Spinal Tap, EEG, and we will be consulting with the ENT about the removal of his trach. Please pray for clean scans, clear spinal fluid, normal EEG(so we can begin weaning him off his seizure meds) and that we can come home without the trach. Sounds like a lot to ask for, but my God is able. One of my recent devotions reminded me of this. “God’s ability to perform is far beyond our prayers-even our greatest prayers! I have recently been thinking of some of the requests I have made of Him innumerable times in my prayers. And what have I requested? I have asked for a cupful, while he owns the entire ocean! I have asked for one simple ray of light, while he holds the sun! My best asking falls immeasurably short of my Father’s ability to give, which is far beyond what we could ever ask”(Streams In The Desert).

“Test me in this...and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it”(Malachi 3:10).

“All the rivers of Your grace I claim, over every promise write my name”(see Eph. 1:8-19)

Thank you for your many prayers for our precious son Jay. Also, please pray for the many other children and their families who continue to fight this deadly beast. As many of you know, Princess Zoie earned her angel wings just a few weeks ago. Please visit her site and leave some words of encouragement for this heartbroken family-caringbridge.org/la/zoie.
Some other children who need your immediate prayers:
Aaron- caringbridge.org/il/aarondhunter
Easton- caringbridge.org/fl/easton
Hannah- caringbridge.org/ms/hanna
Ben-www.bens-story.com
Madison-caringbridge.org/va/madison
Jill- caringbridge.org/mo/jillsjourney

Gunnar Sterk- Gunnar and his family our members of our church. Gunnar who is two, was diagnosed with a brain tumor and will be undergoing surgery this Thursday.

Kenneth Myers-Another Middle GA friend who is battling neuroblastoma stage 4 and preparing for his first Bone Marrow Transplant.

And there are hundreds of others.....

We will update next week as soon as we know Jay’s results.

Thank you again. We love you!

Love,
Cindy

Wednesday, July 7, 2004 3:08 PM CDT

*****New pictures in the album from Jay's victory party!**** Also, please scroll down to the bottom of this page for a slide show!****

What an awesome time we had at Jay's Victory Party! Cindy and I thank everyone that helped or participated in planning the party. We had a blast. More importantly, Jay had a great time. We are so blessed that so many people came to celebrate Jay's victory with us.

We have been so busy that we have fallen behind updating on Jay's progress. We have been preparing to go on vacation most of last week. We left Friday and have visited with both sets of parents and some friends in Jacksonville. In the AM we will be leaving for Disney World. We will be there until next Tuesday.

Jay's progress is getting harder for Cindy and I to see. He is continuing to progress, but at a much slower pace now. His hair is beginning to fill in pretty well now.

We are going to enjoy the next couple of weeks before heading back to Memphis. August 2nd Jay has his MRI and spinal tap. Hopefully on Aug 3rd the trach will be coming out. Please pray for Jay in the coming weeks. Also pray that Cindy and I not get to stressed out as the MRI approaches. Jay's friend Zoie needs plenty of prayer also. She is not doing very well. www.caringbridge.org/la/zoie

Thank you all for your love, support and prayers!

In His Grip, Jason

Wednesday, June 30, 2004 3:50 PM CDT

URGENT PRAYERS NEEDED FOR LITTLE ZOIE!!!! Zoie has recently relapsed with Neuroblastoma and has a tumor on her liver that is continuing to grow. Her only treatment option right now is Chemo but her counts are too low at this time. The Doctors are saying that if the tumor continues to grow she will die. Beginning Chemo with low counts would also be fatal. Please visit Zoie and her family at caringbridge.org/la/zoie.

We will update more later.

Thank you for your prayers!

Love,
Cindy

Sunday, June 13, 2004 8:42 PM CDT

Two weeks have passed since our last update and much has happened. Last weekend we visited Albany for the first time since September. The last time we were there was when we realized without a doubt that something was going on with Jay that was pretty serious. Jay thoroughly enjoyed being at GiGi and Granddaddys. He rode the Mule, chased chickens and swam in a cow trough. It doesn't get any better than that.

Last week was Jay's first full week of physical therapy. Kim, his PT, said she is already seeing differences in just three visits. Cindy and I agree that the therapy is definitely making an immediate impact.

Along with PT, Jay was able to enjoy some of the Vacation Bible School activities. I was concerned about how the other children would treat him. I stopped by briefly one A.M. while the children were touring a fire truck. Jay was sitting next to a little boy and struck up a conversation with him. They talked like "normal" little boys. Jay felt the need to take off his hat and show him his Ommaya reservoir. He told the boy that this is where his medicine went. At first I was happy that Jay was not shy. He has become a very introverted child throughout this process. To see him take the initiative to speak first was surprising. This was the old Jay coming out. On the other hand, as his father, it saddens me that Jay realizes he is different and feels obligated to explain himself or his condition. No parent ever wants there child to feel or know that they are different. Maybe I'm going overboard, but this drove me back to my knees. Complacency was setting in and I was beginning to take things for granted again. This is too easy when things are going well for so long. I was reminded, once again, that every single day has to be enjoyed and cherished with your child. Absolutely nothing can be taken for granted ever again.

We enjoyed a quiet weekend in Macon. The highlight of the weekend was getting new puppies. Jay got a male lab he named Casey. Kaitlyn got a female lab she named Harley. The kids will enjoy the new additions for quite some time.

Hopefully we will get the Victory Party invitations scanned onto the webpage. For some reason we are having difficulty getting the invitation on the page. The Party will be on June 26th starting at 5pm. On the playground we will have a moonwalk, blowup slide, face painting and other activities for the kids. Dinner will be catered. Everyone is invited to come and celebrate with us. If for some reason we cannot get the invitations posted, please RSVP by 6/21 at 478-474-0816.

We continue thanking God everyday for the miracle healing in Jay's life. Jay's healing fits into God's will. He used the instruments of chemo and radiation to rid his body of cancer. Cindy and I know that God ultimately chose to touch Jay with His healing hand. We do not understand God's plan for his life, but we trust Him. We see God working through Jay to change others lives. If you want to be humbled, spend time with a 3 1/2 year old that God uses daily to change others. This change is glorifying God.

Thank you all for your prayers and support!

In His Grip, Jason

Monday, June 7, 2004 8:27 PM CDT

Congratulations to Buck Walden of Albany! Jay drew his name as the winner of the shotgun. Cindy and I thank everyone who participated in the raffle. The raffle was more successful than we could have ever imagined. The funds raised will be used to pay for the numerous therapies Jay will need. Thanks again!

Love, Jason & Cindy

Tuesday, June 1, 2004 8:51 PM CDT

Jay is continuing to do well. We have had an action-packed week. On Wednesday Jay began Physical Therapy in Macon for the first time. We were worried that it would take a while for him to warm up to the therapist, but he took right up with her. Jay will go twice a week for now. Cindy and I can tell a big difference in Jay when he has therapy.

Friday we went to the lake for the weekend. Jay rode the 4-wheeler, jet ski and boat. He wore us out. He would jump off of one thing and want to get on the next thing immediately. He had the most fun he has had since he has been home and he deserved it. When you see your child that happy, it is hard to complain about being tired.

Today was suppose to be the drawing for Jay's raffle. Unfortunately, several friends and customers are late in mailing their tickets back to us. We are extending the drawing until next Monday, June 7th. Sorry for the delay.

Please don't forget to mark your calendars for June 26th. Jay's Victory Party will be from 5pm-7pm.

Thank you all for continued support and prayers. Everyone who is a child of God conquers the world. And this is the VICTORY that conquers the world - our faith. (1 John 5:4)

In His Love, Jason

Thursday, May 20, 2004 9:33 PM CDT

5/24/04
*****New Pictures in the album!!!****

Cindy and I are so happy to report such good news on Jay. The last days leading up to the check-up were getting very stressful. Three of our four prayers were answered and the fourth was just delayed. Jay's MRI was clear, spinal fluid was negative and his feeding tube came out. The trach, due to paralysis on the left side of his larynx, needs to stay in until the next visit.

August 2nd Jay will be due back in Memphis for his next check-up. He will go back every 90 days for 2 years. Cindy and I are going to enjoy each block of time and not worry about the next visit. This experience has taught us to enjoy each day one at a time.

On Saturday June 26th we will have a Victory Party for Jay in the Fellowship Hall at Martha Bowman. Everyone is invited to come and share in Jay's victory. An invitation will be posted here in the coming weeks with more details.

James 5:16 tells us that when a believing person prays, great things happen. We have witnessed thousands of people praying for Jay and great and mighty things have indeed happened. We are not out of the woods yet. Dr. Gajjar said he would not breathe easy until after 2 years of clean check-ups. Please pray with us without ceasing. Cindy and I will continue needing His grace. God tells us "My grace is enough." We are clinging to this and know that He has brought us this far.

Thank you all for your love, support and prayers.

In His Grace, Jason

Wednesday, May 19, 2004 10:19 PM CDT

Jay's spinal fluid is CLEAR. We found out after getting home around 11 PM. We will post a more detailed entry tomorrow.

Thank you all for continued support and prayers.

In His Love, Jason

Tuesday, May 18, 2004 5:37 PM CDT

Jay's MRI was CLEAR. His spinal tap results are still not in, but we should know in the AM. Jay's feeding tube was removed and he will be allowed to resume a normal diet. The trach was the only setback today. The ENT wants to keep the trach in until the next check-up in August. This eliminates the need for us to stay any longer. We anticipate going home in the AM.

We thank God for his love and healing in Jay first. We are also very thankful for all the prayers that have been lifted up on his behalf. These prayers have been answered in a mighty way. God continues to use Jay to further the work of His kingdom.

In His Healing Hand, Jason

Monday, May 17, 2004 8:08 PM CDT

The preliminary MRI showed no tumor. The radiologist will review the scans tonight and let us know for sure in the AM. The hearing test showed that Jay has no hearing loss. The Occupational Therapist follow-up was very positive. The therapist was impressed with Jay's progress. So far all news has been as positive as possible. Please keep up the prayers. Tomorrow AM brings the dreaded spinal tap. In the PM Jay gets his trach out.

In His Love, Jason

Saturday, May 15, 2004 8:28 PM CDT

Jay has been in heaven at home. Everyday is a new adventure. He has continued to progress, but has slowed a bit the last week. We believe that he has reached a point that the therapists will have to help him along. Cindy and I cannot express in words the joy we have felt having Jay home and being a family again.

We are heading back to Memphis on Sunday May 16th for Jay's first check-up. Monday Jay has an MRI late in the PM. Tuesday AM he has his spinal tap. We hope to report good news by Tuesday PM.

The anxiety surrounding the upcoming week is getting unbearable. There are no signs that the tumor is returning, but I think it is normal to be very apprehensive going into each check-up. We are always one MRI away from turning our lives upside down again.

Faith is defined as unwaivering trust. Cindy and I trust God with all of our heart. He loves Jay more than we could ever love him. We are entrusting Jay's health into God's hand and trusting His will be done.

Thank you all for your continued prayers and love. Please remember Jay this week in your prayers.

In His Loving Arms, Jason

Sunday, May 2, 2004 2:03 PM CDT

Hello everyone! These past few weeks have been very busy around the Gaskins' household! Finding a peaceful moment to write an update has been quite challenging. Please forgive me, but always remember that no news is good news!

Jay is continuing to do great! He had a few set backs with a stomach bug that lasted for almost a week. Jay was very sick with fever and vomiting. Needless to say, we made several trips to our pediatrician's office and to the Children's Hospital for cultures. If a St. Jude's child has fever you must culture everything...everything but their big toe:) Thankfully it was only a nasty stomach bug. It has taken him two full weeks to regain his strength, but he is doing much better now.

Last week Jason had a conference in Savannah. The kids and I tagged along and visited with my family in Brunswick for almost a week. It has been close to a year since we were last there. The kids enjoyed spending time with their cousins and going to the beach.

Other exciting news is that Jay has been chosen for a Make-A-Wish trip. Make-A-Wish grants wishes for children who have or have had life threatening illnesses. The "wish fairies" came to the house and asked Jay, "If you could go anywhere or do anything what would it be." Jason and I spent days coaching him to saying Hawaii but he had already made up his mind. Jay wants to go to Disney World! Imagine that! Hopefully we will be able to go this summer.

We return to St. Jude in two weeks(May 17th)for tests and scans. Jason and I are looking forward to everyone seeing how great Jay is doing. He is truly a miracle! Jay's progress is an answer to thousands of prayers.
Thank you Jesus!

When you are praying for Jay this week, please also pray for our dear friends Slcader and Easton. Slcader was admitted to ICU this weekend due to breathing problems. He has just completed treatment and was hoping to go home soon. Easton is recovering from his second brain surgery. He has some swelling in his brain that will have to be addressed. Easton also has a webpage if you would like to leave some words of encouragement-caringbridge.org/fl/easton.

Hope you all have a blessed week! Thank you for your constant prayers.

Love,
Cindy

Sunday, April 11, 2004 3:12 PM CDT

*****NEW PICTURES IN PHOTO ALBUM*****

Happy Easter! What a wonderful week it has been for our family! We arrived home Tuesday night and have spent the rest of the week trying to get settled. What a wonderful feeling to be HOME...and not just for a week visit. I thank God every morning for placing our family back together again.

Jay is doing awesome! He loves being home with his Daddy and Sissy. He is also enjoying chasing the cat, riding his bike, playing with his friends and sleeping in his bulldozer bed. It warms our hearts to see Jay doing "normal" little boy things again. Being home has been the best therapy for him physically and emotionally. He continues to get stronger everyday.

Jay's rash is completely gone and his trach site has healed. He has amazed all the speech and respiratory therapists with how well he is talking around his trach. This has been a true blessing. The G-tube has become somewhat of a challenge since we have been home. Jay is struggling with not being able to have anything to eat or drink by mouth. He wakes up every morning requesting grits and eggs, and every afternoon he wants to enjoy a snack with his sister. We are praying that the trach and the G-tube will be removed at our six week check-up in May.

This weekend we celebrated Easter by spending time with our family and friends. Today we were even able to attend church. Our much loved church family continues to be a blessing to us. Jay is Martha Bowman's poster child for the upcoming Relay for Life. It was very humbling to see posters and buttons with Jay's picture on them. Jason and I were again reminded of how many people love us and are praying for our child. We are looking forward to being involved in the life of our church again.

We are so thankful for the progress that Jay has made. God is so good. Please continue to pray for Jay, and most of all for our dear St. Jude friends we had to leave behind. Many of whom have just begun their journey. We will continue to keep you posted on Jay's recovery.

"Teach me, O Lord, to glory in my cross. Teach me the value of my thorns. Show me how I have climbed to you through the path of pain. Show me it is through my tears I have seen my rainbows".

Love,
Cindy

Saturday, April 3, 2004 2:57 PM CST

Last week I read a Streams in the Desert devotional about faith. The story was from Joshua and told about the Levites crossing the Jordan with the ark of the covenant. When the priests set foot in the river, the water heaped up, the land was dry and they were able to cross safely. God honored their faith. While we do not claim to have that kind of faith, Cindy and I thanked God in advance for cleansing Jay's spinal fluid. Hearing the results of the spinal tap were very gratifying in many ways. First, God's healing hand was revealed to thousands. Secondly, our prayers were answered and our faith confirmed. Lastly, we began to see Light in all of this darkness.

We look forward to Jay completing radiation April 6th. We hope to be home no later than April 7th. Easter this year will have a new meaning. Not only has God brought us new life through the resurrection of Jesus, but He has breathed new life into Jay.

We thank you all for continued prayers, love and support.

In His Love, Jason

Wednesday, March 24, 2004 7:30 PM CST

*3/25/04 - Quick update - Jay's spinal tap was negative today. God is answering our prayers. We look forward to reporting more good news.

Sorry for the delay. It has been crazy around here as you can only imagine! Jay is feeling better and has been in good spirits for the past few days. He has been eating up all the TLC he gets from the pretty nurses. Jay is a BIG flirt and has stolen a lot of hearts!

Jay's rash is a little better, but the infection around his trach is still worrying us and the doctors. A wound specialist has been called in on the situation and will be seeing Jay tomorrow. Hopefully she can come up with a solution.

We think that the combination of his anti-seizure drugs and the radiation has caused the rash. Jay is currently being weaned off the original meds he was taking and has started taking a new one. This of course places him at risk for having seizures again. Please pray for a smooth transition and no seizures.

Tomorrow we begin the last phase of radiation. Jay will only get radiation to the tumor bed for nine sessions. If all goes well, we will be done on Tuesday, April 6th.
I am hoping to be home for Easter.

Please continue to pray for wisdom for Jay's medical team and patience for Jason and I. These last few weeks have been very difficult for all of us especially our sweet baby Jay.

Jay is tough and he will get through this by the grace of God. Thank you for your prayers! We love you!

Also, please continue to pray for our friend Slater and his family. Last week he completed his Bone Marrow Transplant and is very sick from the high-dose chemo.

"As soon as I feel that God is farthest away, He is often nearest to me. When the 'furnace is heated seven times hotter than usual' (Daniel 3:19), I can know that He still lights my way! 'When my spirit grows faint within me, it is You who knows my way' (Ps. 142:3)."

Love,
Cindy

Sunday, March 21, 2004 8:49 PM CST

This is a quick update that Cindy and Jason have asked me to do. Cindy will provide a more formal update tomorrow evening.

Jay continues to remain inpatient at St. Jude, but is no longer in ICU.

He received his G-tube (feeding tube) on Thursday and the surgery went well. On Friday, he began running a fever and breaking out with a rash. The doctors believe that the fever is due to a bacterial infection that he has around his trach site. He is currently on an antibiotic to treat. The rash, they believe, is being caused by one of the anti-seizure meds. They are beginning to wean him off of it, but it will take a week to a week-and-a-half.

Tanner's ears are doing much better, and he is now teething.

Cindy hopes that they will be able to return to the Target house sometime later this week.

Please continue to keep their entire family in your prayers!

Thanks,
Cory Knowlton
jchknowlton@earthlink.net

Saturday, March 13, 2004 2:40 PM CST

Much has changed since last Sunday. Jay's breathing has become a major issue during radiation. Having to go under so much has aggravated his asthma. Also the radiation is causing his throat to be inflamed. As a result, a trach was put in on Friday A.M.. Next, a feeding tube will be put in. These changes came as quite a shock. We are expecting to leave the trach and feeding tube in for 2 months.

Friday P.M. we found out that Jay's spinal fluid was still testing positive for cancer cells. The radiation doctor has told us not to read to much into this because we still have 18 treatments left. Also, the cells present could possibly be dead cells that have not dissipated yet.

Through all of this news, Cindy and I are trusting that God will hear the prayers of so many. We are frustrated that Jay has had such a rough week, but believe better days are ahead. Please continue praying with us for complete healing so that Jay can be used as a living testimony to what God's healing hand can do.

In His Love, Jason

Sunday, March 7, 2004 8:55 PM CST

I am very pleased to report that Jay has been seizure free for ten days! Thank you for all your prayers.

Jay continues to be extremely tired from the radiation and the anti-seizure meds. He has very little energy and is also having difficulty walking. His physical therapist seems to think that he may be experiencing dizziness from all the drugs that he is taking. Hopefully we can begin weaning him off these meds after radiation.

Thank God for the weekends! Spending time with Daddy and Sissy always lifts Jay's spirits. Saturday we went to the Shrine Circus and out to dinner with another St. Jude family. The highlight of the show were the elephant rides. Kaitlyn and Jay rode one of the circus elephants during intermission. Jay was smiling all over himself! We will post the pictures soon.

Tomorrow we begin week three of radiation. We will also test Jay's spinal fluid this week. Please join us in praying for NO CANCER CELLS!

I would also like to ask you to prayer for our friend Slader. Tomorrow he is going inpatient to begin High Dose Chemo with Bone Marrow Transplant. Slader is fighting a very rare stomach cancer. There has only been 7 survivors since the 1980s. Please pray for wisdom for Slader's team of doctors and that he WILL beat the odds. With God ALL things are possible!

"Let us not become weary...for at the proper time we will reap a harvest if we do not give up" Gal. 6:9.

Thanks again for all your prayers.

Love,
Cindy

Sunday, February 29, 2004 2:22 PM CST

Things are finally beginning to get back to "normal". Jay came home Saturday. He has not had a seizure since 4 a.m. Thursday. He is very tired and has little energy. Sunday we tried to go to the Memphis Zoo, but Jay only lasted about an hour. A side effect of radiation is fatigue. Over time he will regain his strength.

Monday, Jay will begin radiation treatment number 8. Only 25 treatments left. We expect to be moving back to Macon Easter week. Jay will have his first follow up visit 6 weeks later.

Tanner is recovering from an ear infection this week. While he was at the doctor, he weighed in at almost 18 pounds. He is growing like a weed. He has also begun to roll over.

Cindy and I continue to thank and praise God for you all. The last 10 days have been extremely stressful. Without the prayers of so many, we would have had a much more difficult time weathering the storm. Please keep Jay in your prayers.

In His Love, Jason

Wednesday, February 25, 2004 6:08 AM CST

The last 6 days have been a roller coaster. The doctors continue adjusting Jay's medication to stop the seizures. The seizures are very brief and harmless. Until the radiation begins killing off the cancer cells, I don't know if we'll be able to completely stop the seizures. The doctors told us that it usually takes 10 treatments before you really begin killing off the cancer cells. Jay has received 4 so far.

The last 24 hours have been a liitle better. Jay has had approximately 5 seizures, lasting 3-10 seconds. We are hoping to control these seizures long enough to get Jay through more radiation treatments. The radiation is much more effective at killing off the cancer cells than the chemotherapy.

Cindy and I continue to stand in amazement at the number of people God is touching through Jay. We thank you all for continued prayers and ask that you pray for Jay during the day today.

In His Love, Jason

Sunday, February 22, 2004 8:00 PM CST

Jay went from 1pm CST yesterday to 1am CST this morning without having a seizure. He has had a total of six seizures today with the longest lasting 40 seconds. His doctors have introduced another anti-convulsant that will hopefully control the seizures.

He will begin another radiation treatment at 7:30am tomorrow morning. Please pray that his body will be protected and that the cancer cells will be destroyed. Pray also that his nausea will be minimal.

Please continue to keep Cindy, Jason, Kaitlyn and Tanner in your prayers also. Cindy currently has laryngitis (not to mention how tired she must be!) and Jason is traveling back to Macon tonight and will be returning to Memphis in a few days.

Cory

Thursday, February 19, 2004 7:54 PM CST

***New update 2/21/04***
Cindy has asked that I update you on Jay. On Wednesday, Jay had a seizure and has been continuing to have seizures since. They are similar to absence seizures in which he blanks out/glazes over. He has been admitted to the ICU at St. Jude's.

His radiation began on Thursday and he had his second treatment on Friday. Dr. Gajjar says that the seizures are from the cancer cells aggrivating his brain cortex and are not being caused by the radiation.

He is currently on anti-seizure drugs, and they will be introducing anti-convulsant drugs. If they are not able to control the seizures with these drugs, they will have to intubate Jay in order to continue the radiation.

Cindy has requested that you pray that the doctors will be able to control Jay's seizures before continuing his radiation on Monday. Pray also for comfort and strength for their entire family.

Cory Knowlton
jchknowlton@earthlink.net

****
Thursday, February 19, 2004
We have spent most of this week preparing to start Radiation Therapy. Monday we had a consultation with Dr. Merchant(our Radiation Oncologist) and his team about Jay's new treatment plan. Jay also under went a two hour Simulation Procedure which pinpoints the areas where the radiation rays will be aimed. During this procedure they used a purple and blue marker to mark these areas. Jay now appears to have just visited a tattoo parlor. He has lines and crosses all over his head and spine.

Today Jay had his first radiation treatment. He will receive thirty-three treatments over the next six and a half weeks. Since Jay has to be put to sleep because of his age, each treatment takes about an hour. He appeared to have handled today pretty well. Of course waking up from anesthesia is always a challenge and he did experience some nausea this evening. Side effects usually become more intense two weeks into treatment. Jay is on anti-nausea medication around the clock, and has respond well to them in the past.

Needless to say this week has been tough for us emotionally. I have personally felt discouraged and overwhelmed with all the information that was thrown at me. I would like to share with you a devotional that spoke to my soul and gave me peace. It is from Streams in the Desert by L.B. Cowman.

"There is a limit to our affliction. God sends it and then removes it. Do you complain saying, "When will this end?" May we quietly wait and patiently endure the will of the Lord till He comes....It is not difficult for the Lord to turn night into day. He who sends the clouds can just as easily clear the skies. Let us be encouraged! Things are better down the road. Let us sing God's praises in anticipation of the things to come. "Weeping may remain for a night, but rejoicing comes in the morning"(Ps. 30:5).

Please pray for Jay's protection during radiation and that short term and long term side effects will be minimum. Jason and I thank you for all the prayers and support. Your journal entries have blessed us in many ways.

Love,
Cindy

Wednesday, February 11, 2004 7:59 PM CST

We have good news and not so good news to report. Jay's tumor has not grown or spread. There is no metastises in his spine. The not so good news is that the spinal fluid continues to be positive for cancer cells. Dr. Gajjar is reccommending that we skip high dose chemo and go straight to radiation. His fear is that if we don't clear up Jay's spinal fluid that the cells may metastisize in his spine. This would significantly reduce his chances of survival. Cindy will be meeting with the doctor tomorrow to determine when Jay will start radiation. We expect it to be rather quick - maybe as early as next week.

Cindy and I have received this news with mixed emotions. Part of the news is good and part of the news is bad. We will continue praying and hoping. God's grace is sufficient. He gives us enough to get through today.

I will update later this week when a schedule is determined. Please continue praying with us. Not only for Jay, but his buddy Garrett is not doing well. Garrett has the same diagnosis, but has tumors in his spine. Please remember his family.

Thank you all for your tireless support.

In His Love, Jason

Sunday, February 8, 2004 1:26 PM CST

We had a great week together! Jay was feeling well and got to play with several of his little buddies. I hated to see them get on the plane and leave, but what keeps me sane is knowing that God is with them and that Jay has to be in Memphis to get better.

This week Jay has an MRI and spinal tap on Tuesday. As long as there are no surprises, high dose chemo will begin Saturday. He'll receive chemo Saturday and Sunday, get a break on Monday, and then stem cell rescue on Tuesday. Hopefully, Jay will feel well enough to go back to the apartment by Tuesday P.M. or Wednesday A.M.. Jay will then be given 2 weeks to rest and then repeat this cycle 2 more times.

Starting Monday at 4 P.M. through Tuesday 4 P.M., we are having a 24 hour prayer vigil. We will surround Jay with prayer before, during and after his MRI. A friend of ours, Susan Collins, suggested this and has even written a prayer for Jay. We were so touched by the prayer that we wanted to share it here and ask that you pray it with us.

Dear Lord - We come before you today with praise and thanksgiving for the Gaskins' family. We come especially to lift up your child, Jay Gaskins. We trust in you as the Great Physician and pray that your healing touch will be upon this child. Lord we pray that you will rid his body of each cancer cell that plagues him. We ask that you restore him and preserve his life with us for many, many years to come. We pray that it be your will to use Jay's life in a mighty way for the furthering of your kingdom, and that we, his church family, will be open and willing to help in this work in whatever way we are called. We pray for strenghth, wisdom and guidance for Jay's parents, Cindy and Jason, and for comfort and protection for his sister, Kaitlyn and his brother, Tanner. Lord, we know that through you all things are possible. Dear Jesus, we cling to the promises brought forth through you. You are our love and hope and we bring the needs of Jay before you now. In all of this Lord, we pray that your will be done in Jay's life and in the lives of all who know and love him. Amen

In His Love, Jason

Sunday, February 1, 2004 2:29 PM CST

*NEW PICTURES ADDED TO PHOTO ALBUM AS WELL AS LINKS AT THE BOTTOM OF PAGE TO PHOTOS OF JAY AT THE RODEO!

Another round of treatments are finished. Tomorrow some stem cells will be collected from Jay's Hickman line. He will be free to go tomorrow A.M.. Instead of waiting until Wednesday, Cindy, Jay and Tanner may come home Monday P.M.. We are very excited about the possibility of an extended stay at home.

Last week I failed to mention that Jay had ridden in the opening ceremonies of the Little Britches Rodeo. Kaitlyn and I had gotten home much later than normal and I was very tired when I wrote the last update. Xtremeimages.com has pictures of Jay on their website.

Tanner is continuing to do well. He is still off the charts in every category. Every weekend he appears to have gotten bigger. He is smiling and laughing now. More importantly, he is sleeping more and crying less.

Kaitlyn is adjusting to her new hectic routine. She struggled in the beginning, but has adapted. She continues to try to keep her daddy straight. Kaitlyn reminds me daily of what I forgot to do and what I need to do. Her favorite thing to say is, "Daddy your head is in the clouds."

Cindy has got to be mother of the year. She is an inspiration to me and everyone that she comes into contact with. Cindy not only cares for a sick child that demands a lot of attention, but is raising a newborn. She then juggles that with loving her husband and daughter on the weekends, who also demand a lot of attention.

Cindy and I were talking this morning about how both of us had read about surrendering this past week. In the bible and in devotions surrender kept showing up. We don't think that this was a coincidence. We have been struggling with surrendering. Cindy and I are realizing that we have no control over Jay's long term health. We are having to do one of the hardest things either of us have ever faced - surrendering Jay to God's will. We can now appreciate more the story of when Abraham was about to make the ultimate sacrifice in taking Isaac on the mountain. Abraham's faith is what we are striving for.

In another devotional we read about Charles Usher. His son was very ill and the doctors had little hope for his recovery. Charles realized that he had not surrendered his son to God's will and was not praying for others. He surrendered his son to God. He continued praying for his son, but included other children in his prayers. His son miraculously improved and eventually healed. In this spirit, Cindy and I would like to include a friend of Jay's in our prayer requests. Erin Hunter is a 5 year-old that has neuroblastoma. He was in remission, but relapsed. Please keep Jay and Erin in your prayers.

In His Love, Jason

Sunday, January 25, 2004 10:15 PM CST

Jay wrapped up a long week on Friday P.M.. He was very excited to see Kaitlyn and me. I was surprised to see him in as good a mood as he was in. I was also pleasantly surprised to see how much better his eye control has gotten after just one week. Jay's eyes have been the same for months. His left eye continues to be weak. This weekend Jay's eye looked strong and stayed straight. His strength and patience cease to amaze me.

For the next week and a half he will be getting boosters and going to therapies. We hope the next 10 days will be slow as he prepares to come home for 5 days.

Cindy and I have been praying for wisdom throughout this journey. As we progress towards the end of treatments we will be faced with much tougher decisions to make on Jay's behalf. We would ask all of our prayer warriors and supporters to pray with us for this wisdom. In all of this we want to see God's will done. In order for this to happen we need divine guidance in making these tough decisions.

In His Love, Jason

Sunday, January 18, 2004 11:56 AM CST

Finally, a slow week. Jay had the chance to catch up on some much needed sleep. He needed this because next week he will be getting a 4 hour drip everyday. This wears him and Cindy out. We will be praying for patience and healing.

Friday we received an update. Jay's spinal fluid tested positive, but had a lot less cancer cells present. Unfortunately, there is no scientific measure for this. The reading of his fluid is subjective. According to Dr. Gajjar the fluid is much cleaner than it was before Christmas. We will test again in 3 weeks. An MRI has been scheduled for Feb 10th.

Tentatively, we are scheduled to come home Feb 4-8. This could change based on Jay's counts.This would be the last opportunity for quite a while.

Anytime that we begin waivering or questioning how Jay's suffering could be doing the work of the kingdom, God brings someone into our lives that reinforces our faith. Recently someone approached me who is going through a divorce. She said that this webpage had helped her cope. The messages here have been an inspiration. I never would have believed that Jay's illness would touch someone going through a divorce. God works in amazing ways.

Cindy and I do not want to take credit for anything written here. We are inspired by the Holy Spirit to write what is written here. We are tools being used by God to deliver our thoughts and feelings along this journey. If someones life is touched or changed as a result, to God be the glory.

In His Love, Jason

Sunday, January 11, 2004 10:15 PM CST

After having such a rough week, Cindy and I were hoping Jay was going to have a slow week to catch up on some rest. Tuesday morning, Jan 6th, Jay woke up with a fever of 102. Later that morning we found out that his white blood cell counts were down to 100 and hemoglobin was 7. Because of all these factors, Jay had to go inpatient immediately. After 2 days of antibotics, boosters and a blood tranfusion, Jay was able to come home Thursday afternoon.

Friday was no less hectic. Jay had appointments from early morning through early afternoon. By the time I got there Friday afternoon, Jay was worn out. Seeing Kaitlyn and I did perk him up for a while, along with a trip to Toys R Us.

Saturday Jay slept off and on all day. At first it bothered me, but then I thought about what he has been through the last 2 weeks. I probably would not have gotten out of bed. We finally left the apartment late Saturday and headed to the RMH for dinner. A family cooked dinner for all the patients and their families. This family does this once a month. If anyone wants to see God's love first hand, go to your local RMH on a Saturday evening. You will witness people giving up half of their Saturday to fix complete strangers dinner. After serving us, these angels hold a service to offer prayers and praises with us and for us.

Sunday afternoon as I was leaving, Jay was headed back to St. Jude to receive platelets. His platelets were low and they need to be higher for the stem cell harvest tomorrow. This procedure will take most of the day. Please pray for patience for Jay, Cindy, Tanner and Cory.

Anytime that I begin to complain about anything I think about Jay and what he is going through. He gets drug around all day for procedures, treatments, therapies, and numerous other meetings, but takes all of it in stride. He gets grumpy from time to time, but deals with it a lot better than we would. I never would have imagined that my son would be teaching me about the virtue of patience. Further evidence that God has a sense of humor.

Cindy and I cannot begin to describe the love we have been shown throughout this journey. It is very humbling to see God at work in our daily lives. Not all of our days are good, but we witness His love through others daily. One of my favorite verses in the bible is in 1 Corinthians 13, "Love is patient, love is kind...It always protects, always trusts, always hopes, always preserveres. Love NEVER fails." His love is sustaining us.

In His Love, Jason

Sunday, January 4, 2004 9:34 PM CST

Happy Birthday Baby Jay! Monday, January 5th is Jay's 3rd birthday. Cindy and I feel blessed that God has entrusted us to raise three of His children. At each child's birthday we are reminded of our wonderful responsibility to raise God-fearing, God-loving children. Our three children have brought so much happiness to our lives.

This week will be slow for Jay. After last weeks grueling schedule he deserves a break. He will get physical and occupational therapy, but that is it. We expect Jay's white blood cell counts to drop and then come back up within a week. Once the counts reach a healthy level, we'll begin harvesting his stem cells for high dose chemo.

I have gotten spoiled over the last couple of weeks. I have seen Cindy, Jay and Tanner 13 of the last 16 days. It has been a blessing. Cindy and I have come to appreciate our time together more. With such limited time together, we have a better understanding of the phrase "One day at a time."

Thank you all for your continued support and prayers.

In His Love, Jason

Saturday, December 27, 2003 9:24 PM CST

We hope everyone had a safe and happy holiday! We had a great time being together at home for the first time in 12 weeks. It is hard to believe that it has been that long. Tanner's baptism and Jay's healing services were such a blessing. We want to thank eveyone that had a hand in organizing or participating in these important events. We have faith that when the Body comes together like that that God hears our prayers.

Tomorrow all five of us will be flying back to Memphis. I will get Cindy and the kids back to the apartment and then jet back to the airport. The pilot will wait on me and we'll fly back alone. Please pray for safe travels.

Monday Jay will begin a 3 week round of chemo. At the end of this chemo a sample of his spinal fluid will be taken. If it is clear, we will proceed with another 3 weeks, do an MRI and then begin high dose chemo. If the new chemo does not work, we will proceed directly to high dose chemo. We need the new chemo to work for 6 weeks. During these 6 weeks we will be harvesting Jay's stem cells. His stem cells will be used to rescue him after receiving high dose chemo. An MRI will be done 6 weeks into high dose chemo. If the chemo is working we'll continue for another 6 weeks. If the chemo is not working we have the option of continuing chemo or going straight to radiation. We need the chemo to work so that we can use a lower dose of radiation. If the chemo does not work we'll be forced to use high dose radiation. With the higher dose radiation comes the possibility of more long term side effects.

There are so many paths we could be led down that if I stop to think about it, my head spins. It is at this time that we are reminding ourselves that God is in control. It is a sobering moment in life when you wake up and realize you have no control over a situation like this. You can put your child in the best hospital in the world and surround him with the most intelligent doctors in the world, but God ultimately holds his fate. Cindy and I are praying that God would allow Jay to get healthy and to be used for His glory. The problem is we want God's will to be our will, when it suppose to be the other way around.

Please pray for safe travels and this new chemo to work. Thank you all for your support and prayers.

In His Love, Jason

Tuesday, December 16, 2003 7:00 PM CST

It is with a very heavy heart that we have to report that Jay's preliminary MRI was inaccurate. After the radiologist reviewed the scans he found a microscopic tumor growing back where the original tumor was. The tumor is so small that surgery is not necessary. Jay's spine was clean and the cancer has not spread. We knew going in that there was a 40% chance that the tumor could grow back during chemo, before radiation is administered. That knowledge did not ease the sting of the news.

The plan of attack is to get Jay into high dose chemo after the first of the year. The exact time has not been determined yet. He will get approximately 12 weeks of this. Dr. Gajjar thinks that the high dose chemo will shrink the tumor even smaller. The smaller the tumor, the more effective the radiation. After another MRI, Jay would then get 6 weeks of radiation. None of this is set in stone though. One thing we have learned about St. Jude is to never get comfortable with one schedule because as soon as you do, it gets changed.

This emotional roller coaster is beginning to take its toll. As soon as we think things are under control, something like this reminds us that we are not in control. As I was driving home, I argued with God. Why me? Why my child? What have I done to deserve this?
It was in this meditative time that God spoke to my heart and said it's not about you. It's about Me. I realized right then how I am a very small part of a much greater plan. Unfortunately I cannot see the grand plan for our lives. It also occurred to me how selfishly I have lived the past 29 years of my life. When we look at life through God's eyes, our perspective changes.

Please continue to keep Jay and our family in your prayers. God answers our prayers with yes, no and wait. Cindy and I believe that God is telling us to wait. We are hoping and praying for a yes at the end of this. How fortuitous that Cindy and I will be lighting the Candle of Hope at church Sunday.

We love you all and thank you for your support.

In His Loving Arms, Jason

Monday, December 15, 2003 3:58 PM CST

Praise God! Jay's preliminary MRI reading was negative. The radiologist will review the MRI in greater detail in the A.M.. We do not anticipate to hear differently tomorrow. Jay will begin another 10 weeks of chemo on Dec 29th. This is the preferred treatment for now. We need to buy as much time as possible before we begin exposing Jay to radiation. I will put a more detailed update in Tuesday evening. Thank you all for your continued support and prayers. Please do not let up. God is answering with a resounding "yes".

In His Love, Jason

Sunday, December 7, 2003 9:24 PM CST

Week 8 begins tomorrow. Jay seems to be handling the oral chemo much better. His appetite is back and he is sleeping well. Next Monday, Dec 15th, Jay will have his first MRI since he began chemo. Cindy and I are cautiously optimistic since the spinal fluid has been negative. Our prayer is that God would use this chemo to wash away all cancer cells and to prevent the tumor from growing back or metastisizing anywhere else. Please join us in this request to Him.

Tanner is continuing to eat and sleep well. He is over 11 pounds now and has two teeth already. He also has good head control to be 4 weeks old. Tanner has been a positive distraction for Jay and us. There is never a dull moment at the Gaskins' house.

Thank you all for your continued love and support. Please pray for a clean MRI next Monday. The results of this test will determine the path we take going forward. I will update the webpage immediately after we get the results.

In His Love, Jason

Sunday, November 30, 2003 10:16 PM CST

We hope you all had as safe and as good a Thanksgiving as we did. We ate at RMH for lunch and the Scarborough's for dinner. For all of you who don't know Grant and Ann Scarborough, they recently moved from Macon to Memphis. Grant is doing his residency in pediatrics at a hospital in Memphis. They are wonderful people who exemplify the Word in action. Grant and Ann have been a touch of normalcy for Cindy and me.

Jay begins week 7 on Monday. For the next 3 weeks he will receive oral chemo. This therapy is not as tough on him. This will give him a breather from the rigorous schedule he has been on so far. We can see Jay wearing thin the last 2 weeks. His energy level is less and he is more irritable. His hair is beginning to thin. Up to this point everyone has been surprised that he has this much hair still. We are not concerned that Jay's hair is falling out, but it is a big dose of reality that maybe we weren't prepared for yet. The bald head is a reminder that our child is truly sick.

Our honeymoon with Tanner officially ended Thanksgiving eve. Tanner has had a touch of colic every evening since. Cindy and I walked around liked zombies all weekend. Tanner also is coming down with a cold. Please pray that this passes. We cannot give him medicine for 3 more weeks. Cindy is going to the clinic tomorrow morning to let the pediatrician listen to Tanner.

Hopefully, if all goes well, Cindy, Jay and Tanner will be home from Saturday Dec 20th through Sunday Dec 28th. We will be baptizing Tanner on the 21st and having a healing service for Jay sometime that week. We are ecstatic to be together for Christmas in Macon.

Thank you all for your continued support and prayers.

In His Love, Jason

Sunday, November 23, 2003 7:25 PM CST

Happy Thanksgiving! Our prayer for you all is to have safe travels and to give thanks to the Lord for all He has given us. The blessings we have received this year are immeasurable. God has allowed things into our lives that make us realize how much we have to be thankful for. Cindy and I have realized this year how much we have taken for granted. Through it all we have become even more thankful. Isn't it a blessing that God would use a painful situation to open our eyes to His love? We are humbled and honored that our son is being used by God to touch the lives of so many. Cindy and I are clinging to Romans 8:28 "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose". We want God to spare us pain, but we know that suffering draws us apart from worldly cares and brings us closer to Him.

Have a safe Thanksgiving!

In His Loving Arms, Jason

Thursday, November 20, 2003 11:19 AM CST

Take a look at the photo album for new pictures of Tanner and proud big sister and brother!

Sunday, November 16, 2003 9:44 PM CST

Parents again! Cindy and I are very excited and feel blessed that the Lord has given us another gift. Tanner has been a great baby. He eats every 3 hours and then goes back to sleep until the next feeding. I told Cindy that if all babies were this easy we'd have 5 or 6. Cindy doesn't think that's very funny.

Cindy is healing very quickly. One week after having a baby, you'd hardly know it. We thank you all for your specific prayers for Cindy and Tanner during these stressful times. Once again our prayers were answered with a resounding "yes".

Monday Jay will begin week 5. We can tell a definite difference in how he's feeling. The chemo is beginning to take its toll on Jay. The worst two side effects are loss of appetite and irritability. We can see these two things getting worse.

Our biggest prayer need now is patience for Cindy. Patience with the newborn and Baby Jay. The daily grind of St. Jude can be emotionally draining. As this wears on you, your patience naturally gets thin.

Thank you all for your continued support and prayers!

In His Love, Jason

Saturday, November 8, 2003 12:46 AM CST

Baby hercules was born at 3:22 PM EST. Tanner weighed 9lbs 12ozs and was 22 inches long. He is off all the charts that BMH has. We were afraid that we were going to have to have an emergency C-section after 2 hours of pushing. Fortunately, with the help of forceps the doctor was able to encourage Tanner to come out.

Thank you for all of your prayers. To God be the glory...Jason

Monday, November 3, 2003 10:13 PM CST

Jay's progress continues to amaze us. On Thursday, before Jay received his chemo in his Ommaya reservoir, the nurse took a sample of his spinal fluid. The fluid tested negative for cancer cells after just one treatment. This was unexpected, wonderful news that Cindy and I needed to hear. The burdens of this load can be temporarily lifted by one good progress report. We continue to pray that the chemo does its job.

Friday night after I arrived in Memphis, Jay took his first steps since before surgery. He walked several times that evening with no help. We were surprised to see him walk independently this early. In one week his walking has improved dramatically.

This Friday, if Cindy has not already had Tanner, we will be checking into Baptist hospital for an induction. We are excited about our next gift from God. Kaitlyn and Jay are excited now, but I'm sure jealousy will kick in soon enough.

Please continue to keep us in your prayers this week as we have a full plate.

In His Love, Jason

Monday, October 27, 2003 8:55 PM CST

Jay began week 2 of chemotherapy today. Because his counts were so high on Friday, the doctor did not want to drag him in on Sunday afternoon. Cindy and I were not complaining about that. I cannot put into words the happiness we all felt this weekend. Jay, Kaitlyn, Cindy and I were up until all hours of the night playing with toys, hugging or just talking.

A local church served dinner Saturday night at the RMH. A man walked right up to us and began asking us about Jay's condition. Come to find out his granddaughter had the same type tumor and had been through the same process. Her prognosis was much worse, but she has now been in remission for 6 years. Later that night we saw the same man in the meditation room. He was playing his guitar and singing. After we sat down he stopped playing to ask us more questions about Jay. He than began singing a song to Jay. After the song was over he prayed for Jay and the family.

I am convinced that God sent this man to us. There were probably one hundred people he could have spoken to, but for some reason he approached us. He sang a beautiful song to Jay and prayed for him like he had known him his whole life. The sad part of this is I never did get the man's name. I guess that is not that important, but the love this man showed Jay and us was definitely heaven sent.

Tonight Alpha Delta Pi from a local college had a Halloween party for the kids at the RMH. Cindy said that the girls were flirting with Jay in his Bob the Builder costume. I am sure that he was soaking up all that attention. I am eagerly anticipating going back this weekend.

Thank you all for your continued support and prayers.

In His Love, Jason

Tuesday, October 21, 2003 6:46 PM CDT

Chemotherapy has finally begun. Sunday afternoon Jay began receiving his first drip. He has tolerated the chemo fairly well with the help of antinausea medicine. Tomorrow Jay will be allowed to go back to the Ronald McDonald House. He is eagerly anticipating leaving the hospital. For the next nine weeks Jay will continue receiving treatments Sunday - Thursday as an outpatient. This will make Jay and Cindy much happier.

This morning I read the Upper Room. I was reminded of the great faith that Job exhibited in God through his turmoil. Job said, "Though God slay me, yet I will trust Him." What a man of faith. This poor fellow lost all of his material possessions, but more importantly lost all ten of his children at once. He trusted in God despite the devastation that surrounded him.

The devotional I read this morning was just what I needed. It is amazing how the Lord knows when to remind you of His presence. Just when you think He's gone, He leaves subtle reminders that He is ever present.

Thank you all for your continued support and prayers.

In His Love, Jason

Wednesday, October 15, 2003 8:19 PM CDT

As progress slows, so have my updates. Not much has happened since last Friday. Today, Jay had an Ommaya reservoir put in the back of his head. This line will be used to put medicine directly into his spinal fluid. This treatment is exclusive to St. Jude. This was the very reason we chose St. Jude because we knew that Jay would be getting the cutting edge in treatment.

Jay is doing well. He continues playing with his toys and talking. Last night, Jay and Kaitlyn talked for 10 minutes. I believe that he misses Kaitlyn more than anyone else. I'm just happy to hear and see him getting back to his old self.

Chemotherapy should start Friday or Monday. Cindy and I are anxious to get him started. The road to recovery begins with the first day of chemo.

Thank you all for your continued support and prayers. Please remember Jay and the family in the coming days as he begins treatment.

I have been reluctant in posting anything about Jay's medical fund. Originally, the fund was going to be for the family and not a solicitation to the public. Due to overwhelming requests I am posting the info. Please make checks payable to Martha Bowman UMC - Gaskins Altar Fund, 500 Bass Road, Macon GA 31210. Gaskins Altar Fund must be referenced to go into Jay's account.

Our prayer is that God would continue working a miracle through Jay. We pray for a good response to the chemo and continued healing. Cindy and I continue leaning on Him to pull us through this.

Forever in His Loving Arms, Jason

Saturday, October 11, 2003 10:28 PM CDT

It is with a sad and heavy heart that I have to report that Jay's spinal tap was positive for tumor cells. This will cause his treatment to be much more aggressive. With this aggressive treatment will come potentially more long term side effects. It is critical at this point in Jay's treatment to get started with chemotherapy ASAP.

Please pray that Jay's body will respond well to chemo and no new tumors pop up before he can get radiation after the first of the year.

As a parent your first concern is always for the well being of your children. The feeling of helplessness Cindy and I feel is indescribable. You do everything in your power to shield your kids from all sorts of dangers, fix their problems, but some things cannot be fixed by us. It is in times like this that the only one to turn to is God. I do not know or understand why any of this has to happen. I do know that God is still in control.

Please continue praying for our family. Without your prayers, along with His love, we could not get through the days.

In His Loving Arms, Jason

Wednesday, October 8, 2003 10:23 AM CDT

Praise Jesus! Jay's MRI was clear. The postop MRI in Macon was clear, but we found that the MRI here goes into greater detail and can see things the Macon MRI may have missed. Dr. Gajjar was able to verify with the radiologist that the MRI was clear, the tumor was 100% extracted and no metastisis was present in the spine.

Today Jay is getting a bone scan and hearing test. Dr. Gajjar says this is just a formality. Less than 1% of patients have meduloblastoma spread to the bone.

Tomorrow Jay will be getting his Hickman line in his chest. This will make taking blood and giving medicine much easier and less traumitizing. Later in the afternoon Cindy and I will be meeting with her OB/GYN.

Friday is D-day. Jay's spinal tap is scheduled for the AM. The results of this test determine the course of treatment. It also lowers or raises his prognosis.

Please continue to pray for Jay and our family. Memphis is nice, but presents its own challenges. With God's help we will continue to preservere. Thank you all and God bless you all.

In His Arms, Jason

Monday, October 6, 2003 7:28 PM CDT

The Gaskins family has safely made their way to Tennessee. They have limited computer access for now, so they've asked me to post an update. The traveling was "long and hard". Actually Jason had an uneventful seven-hour drive and some time to kill before picking up the rest of the family at the airport. On the other hand, Cindy, Kaitlyn and Jay had a frustrating six-hour journey. Their trip included two separate hour-long delays waiting for their Angel Flight pilots. The second delay did allow plenty of time for their lunch, which consisted of vending-machine-finds at the second airport. There they changed planes from a twin to a single engine plane. The cramped quarters on the last leg proved especially challenging with the then very tired and cranky children. Despite the bumpy ride there, Jason and Cindy are grateful for the safe trip and God's provisions in getting them to Memphis.

Currently, the whole family is in a single hotel room near the hospital, which is not affording anyone much sleep. One of tomorrow's scheduled events includes meeting with the social worker about getting into the Target house (similar to a Ronald McDonald House but better suited for long-term stays). The Target house will offer much better accommodations, with such luxuries as two sleeping rooms and laundry facilities. :o) On another front the social worker is also even working on getting Cindy lined up with an OB. Jason and Cindy are already impressed with St. Jude's staff and facilities. The beautiful hospital is very obviously child centered and family friendly.

Today, they all received a warm welcome from Jay's doctors and other members of the St.Jude staff. Two hours were spent discussing Jay's medical history. It was discovered that Jay has a nasty case of thrush in his mouth that is making even eating painful. This infection is one of many issues right now that Jay is exhibiting that could be a result of the high doses of steroids that Jay has been on since his surgery. The steroid dose is being drastically reduced as the neurologist thinks that Jay is actually experiencing steroid-induced psychosis. This would explain his lethargy, lack of interest in playing, extreme hunger, irritability and his "rain man" tendencies as Cindy puts it. Jay has been focusing in on single concepts and repetitively calling out about them. They couldn't help but laugh when he got stuck on "I want my toe nails clipped!"--over and over. Hopefully they are getting a few more laughs and a time of unwinding this evening as they've "escaped" to the mall for a while.

The rest of the week is to be one of preparation and "getting to know Jay". He is scheduled for surgery Thursday morning to put in a long-term IV access. A MRI is planned for tomorrow. Other events for the week include a bone scan, spinal tap and appointments for Jay to meet with physical, occupational, and speech therapists. They need to establish what his baseline is before treatments begin.

One day at the hospital has been plenty time to make it evident that a high priority will be finding things for Kaitlyn to do. Today wasn't much fun for her. Cindy has been able to arrange for Kaitlyn and herself to participate in some of the child-life activities tomorrow. It was an easy decision as Cindy can't be near the MRI anyway. This will leave Jason and Jay to go to the MRI. I wouldn't be surprised to hear that both sleep through it, even though only Jay will be receiving sedation!

In summary, the prayer requests are as follows:
A quick move to the Target house
Rapid healing from Jay's thrush
Successful weaning of the steroids and dissipation of the related symptoms
Activities for Kaitlyn
Sleep
Sleep
And did I mention SLEEP!

Also, Jason and Kaitlyn are scheduled to return to Macon Saturday via another Angel Flight. We can certainly pray that it is equally as safe, but more pleasant than this first flight!

Jason and Cindy appreciate the new support that they are receiving from St.Jude's, but they certainly continue to thank God for the thoughts and prayers of family and friends.

Allison Tripp

Thursday, October 2, 2003 4:51 PM CDT

The words "I want my skidsteer" never sounded so sweet. This morning Jay awoke asking to play with his toys. This is the first time that he has shown any interest in playing with his toys. This "little" victory was a good way to start the day.

Another bit of good news is Jay's eye control. He seems to be focusing better. This is very important to his recovery because until he has good eye control, he will continue to be unsteady walking and regaining coordination.
Another "little" victory.

Cindy and I continue looking ahead to better days. We hope that in 7 months this nightmare chapter in our lives can be shut. We appreciate all of your prayers and support. We are sorry that we cannot respond back to everyone of your emails, voicemails, cards and messages, but we have been humbly overwhelmed by the amount of support that has been poured out on us. It was fortuitous that 2 weeks before this journey began that Cindy and I stood before our church and witnessed about our tithing. One thing that I tried to make clear was that the blessings that come from tithing were not only monetary, but come in many other important ways. Cindy and I have seen the "floodgates of heaven thrown open and blessings poured out so much that we do not have enough room for them" during these trying times.

May God bless you all. We love you all.

In His Love, Jason

Tuesday, September 30, 2003 7:21 PM CDT

Jay's progress continues, but has slowed a bit. He is getting stronger and more coordinated everyday. Cindy and I are trying to be patient, but after seeing Jay make considerable progress in a relatively short time, it's hard. We got spoiled the first week after his surgery. Jay made so many advances so quickly. Now is the slow time that Jay will need to slowly continue getting stronger everyday. The "little" victories will become more important now that many of the "big" victories have been won.

Sunday we will be leaving for Memphis. Our protocol was completely changed this afternoon. Jay will receive two 10 week sessions of chemotherapy first. He will be able to come home for 4-5 weeks and then return for 6 weeks of radiation. After all of this, we will begin with the quarterly visits and resume with the original protocol.

This news came today as quite a shock. Cindy and I had been looking forward to having Jay home for Christmas. The chances of that happening now are pretty slim.

Please continue to keep Jay and our family in your prayers. Next week Jay faces some critical tests. He will have another MRI, bone scan and spinal tap. The results of all these tests determine the aggressiveness of chemo and radiation and could lower or raise his prognosis.

May God bless you all. In His Loving Arms, Jason

Sunday, September 28, 2003 8:02 AM CDT

Home Sweet Home! We came home Friday afternoon around 5:00 PM. Jay was happy to be home finally. His sleeping has been undisturbed for two nights now and we think this is helping. He continues to eat us out of house and home. The doctor does not want to start weaning him off the steroids until next week. His strength is slowly coming back. Yesterday Jay needed help sitting up at the table. This morning Jay sat at the table and fed himself with no help.

Because there is not enough time to line up a physical therapist, Lara Hotchkiss has volunteered to work with Jay until we leave for Memphis. God continues to amaze us. He has sent us angel after angel to get us through this. His love is truly amazing.

The love you all have shown is also amazing. Thank you all and please continue to pray.

In His Love, Jason

Friday, September 26, 2003 1:07 PM CDT

Thank God! We are going home this evening. Ten days after this journey began, we will be retuning home for a week before going to Memphis. Jay's health continues to improve. His appetite is healthy evidenced by his efforts to eat the furniture. Through prayers, food, rest and therapy Jay should be healthy enough to make the trip to Memphis.

We are so thankful that we serve a God that hears our prayers. His love and strength has pulled us through this. He has been faithful to us all and I pray that we never lose sight of this.

Cindy and I thank you all for your support and prayers. Please keep Jay and the rest of the family in your prayers (they are working). We love you all and ask for blessings for you and your families.

In His Love, Jason

Thursday, September 25, 2003 9:28 AM CDT

Jay is continuing to progress well. His CAT scan showed that his ventricles are smaller than they were after the last scan. This is good because his severe headaches were being caused by oversized ventricles.

After the CAT scan Jay went to physical therapy for the first time. He was not happy about this. we were a little unprepared to see that Jay was going to have to relearn some pretty basic functions. He is struggling with his coordination and eye control. These are all normal after brain surgery, but it still frightens you the first time you see it.

Cindy spoke to St. Jude's yesterday. The tentative plan is to go to Memphis Oct 6th for two months. Jay would then be able to return home for 4-5 weeks. He would then return to Memphis for four months. After this he would go back once a quarter for an extended weekend for two years. Then every six months for two and one half years. After all this (assuming every goes well) he would be considered in remission.

That is a lot of bad information in a relatively short time. Cindy and I have to focus on the positives here and we see a lot of positives. The first and most humbling one is that we see God using our son to glorify His name. The second positive is that our son is alive. Finally, Jay will be home for Christmas.

Please continue to keep Jay and our family in your prayers. May God bless you all.

In His Love, Jason

Tuesday, September 23, 2003 7:57 PM CDT

Jay's lightning fast progress has finally begun to slow. After making a month's worth of advances in just 4 days, the last 24 hours have been slow. He is continuing to eat and sleep well. His swallow test went well with the therapist today and soft foods will continue to be the food of choice for a couple of more days. Hopefully this weekend Jay will be ready for more solid foods.

As of 5:00 PM today Jay was moved out of PICU and into room 330 in the Childrens Hospital. Thank you Jesus! The one-on-one attention will be missed, but the freedom a regular room offers is better.

Jay is continuing to have headaches. This is normal, but a CAT scan has been ordered for tomorrow just to make sure that there is no excessive swelling or bleeding. Please remember Jay in your prayers tomorrow.

St. Jude's is meeting tomorrow and Thursday to review Jay's case. We may know as soon as Friday when Jay has to go to Memphis.

Lastly, tomorrow is Kaitlyn's 5th birthday. She has continued to be a challenge during these already challenging days. Please continue to pray for her.

Although our lives are completely chaotic at this time, we know God is still in control. Cindy and I have been clinging to Matthew 11:28-30:"Come to me; all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light."

Thank you all for continued support and prayers!

In His Love, Jason

Tuesday, September 23, 2003 6:17 AM CDT

With the support and prayers of thousands, Jay's recovery continues to amaze not only Cindy and me, but the doctors as well. Jay is continuing to eat, drink and talk in sentences. It should have taken almost 4 weeks to be able to do all of these things. God has heard all of our prayers and continues to bless us.

Today Jay will have a swallowing test to make sure he is swallowing correctly. The therapist did not want to do the test, but to be on the safe side, Dr. Troup ordered it anyway. After the test we expect to be moving to the Childrens Hospital next door. This will allow us more freedom.

Thank you all for your continued support and prayers. I have prayed that God would bless you all for your selfless acts of love just as we have been blessed.

In His Loving Arms, Jason

Sunday, September 21, 2003 9:38 PM CDT

What a difference one day can make! I am happy to report that Jay not only drank apple juice, grape juice, and milk, but he also ate ice cream, mashed potatoes and chicken fingers. Jay's progress is truly a miracle.Tomorrow Jay will be visited by several therapists. Based on how he does, we may be moving him back to a regular room in the Children's Hospital and out of PICU. Praise God!

Thursday St.Jude's will be reviewing Jay's case and deciding what protocol best fits his needs. Once that is decided, there will be a small window of time to get him to Memphis and on the road to recovery. We only hope that we get to bring him home for a couple of days.

Thank you all for your continued support and prayers for Jay and our family. God has shown His immeasurable love through you all. Our theme this year at Martha Bowman UMC is See Jesus, Be Jesus. Cindy and I have seen Jesus in the face of loved ones and complete strangers.

In His Loving Arms, Jason

Sunday, September 21, 2003 8:13 AM CDT

Cindy and I would like to first thank God and praise Him for all He has done for our family. Secondly, we are deeply indebted to all of our families and friends who have been supporting us with their prayers and presence. A final thanks to all of the unknown angels out there who have been lifting up our family during this time.

Jay had a good night last night. He was able to drink a total of 4 ounces of juice out of his bottle before going to sleep. This morning he awoke asking to eat again. We gave him his bottle and he drank another 4 ounces of juice. As a result, the doctor has decided that since he is doing so well with his swallowing, that his IV fluids are going to be cut in half today and he wants Jay to try and eat soft foods. This is 1 day earlier than originally planned.

Please continue to keep Jay and our family in your thoughts and prayers. Jay seems to be having only one difficulty so far. His right eye appears to be a little weak. Pray that God would touch his eye with His healing hand. Also, Kaitlyn is having a difficult time with all of this. Pray that she not feel left out or unloved.

In His Love, Jason

Saturday, September 20, 2003 10:03 AM CDT

(****Edited at 9:14PM to add additional praise report at the end.)

Jay is a special 2 1/2 year old little boy who has had quite a week! A lemon-sized mass was discovered on the base of his brain Tuesday during an MRI. Thursday, he underwent an 8 hour operation to remove the tumor. Yesterday another MRI helped the radiologist and the neurosurgeon to confirm the success of the surgery. Immediately after surgery, Jay was already moving both arms and legs. He is now off the breathing machine and has been resting peacefully. Jay even opened his eyes and recognized his parents this morning.

The tumor was located on Jay’s brainstem and around the nerves that controls swallowing. Because these nerves were disturbed during surgery, he will not be allowed to eat or drink for the weekend. Monday Jay is scheduled for a swallow study to make sure that he is able to safely take things by mouth without aspirating.

Also next week, St. Jude hospital’s review board will be discussing Jay’s case and deciding when he should begin follow-up treatment. Because the tumor was malignant, they are expecting that Jay will need to spend an extended period of time at this cutting edge hospital in Memphis, TN.

It has been an exhausting, long few days for the Gaskins family. They are hoping for a peaceful and restful weekend for them all to recover. They certainly appreciate the love and concern that has been expressed by many. Hopefully this page will provide a more manageable route to keep family and friends updated. The guest book is also a wonderful place for you to leave notes to let them know you’re thinking about them. There they can read at their convenience, during these inevitably hectic days at the hospital.

As the Gaskins have needs, they will also communicate them here. One of their friends, Cory Knowlton has started a list of people who want to prepare meals. Please call her at 474-6629 if you are interested. Continued prayers and a lot of sleep are their primary needs right now.

As a fellow mom with lots of hospital experience, I know how amazingly God uses people to show his love and ease heavy burdens. Thank you for your support for Jason, Cindy, Kaitlyn, Jay, and Tanner (their unborn little guy)! It really means a lot.

Allison Tripp

****Contrary to the original plan, Jay was able to charm his nurse into getting him permission to drink clear liquids this evening. Jay EFFORTLESSLY put down three ounces of apple juice! He has also been talking and obviously expressing his desires. What wonderful blessings to be able to report!

Click here to go back to the main page.

----End of History----


Privacy Policy \| Sponsorship/Donations \| About Us \| Contact Us \| FAQs
Copyright © 1997-2003 CaringBridge Nonprofit Organization, All rights reserved.