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Sunday, December 30, 2007 10:42 PM CST

Ok, I know, I know... I will try to do a little better!

Christmas has come and gone, and now we are mustering up to face tomorrow. Yep, our little angel would have been 6 years old. I looked at some size 6 little boy pajamas tonight at Target, and I just really couldn't imagine Jake that "big". I did go ahead and buy a Dora and a Spongebob pinata for tomorrow night. Staci is going to make cupcakes. I am quite sure that we will have plenty of sparklers and roman candles on hand, since those were Jakipoo's favorites.

This Christmas I looked at Staci and said, "Who could have ever guessed last Christmas what we would be looking like this Christmas." Jake had only passed away a couple of months prior and we were all sitting around, putting on a happy face, and trying to figure out the new dynamic. What do we do about his stocking? Do we buy toys and things that we would have normally for Christmas if the mood strikes? What is the appropriate "gift" to put at the cemetery? And most of all, how can we possibly ever be happy again? I will say that for the most part all of those questions remain.... we still buy SpongeBob or Shrek things that we know he would have loved. We keep them a while (or some maybe forever) and then pass them onto a child who would especially like them. Jake's headstone has been ordered and it is fab-u-lous, so that will "beautify" that area, and as for the stocking... well, he still has one at his house and JinJin's. If you walk in mine, Bonnie's, Eddie's, JinJin's, or Staci's (sorry haven't been in yours to know, PawPaw) houses, there are a host of "BELIEVEs" to remind us of our sweet boy. He far outnumbers sweet Ellie Girl (and Maddi for that matter) as far as pics on the wall and shelves go. I am sure they will soon catch him there though. I know he is so proud to see our family this year though. Staci had no idea she was pregnant last Christmas, and I had NO idea I would have a precious baby girl this year either. We were just blessed beyond measure!

I don't know if Jessi is working tomorrow. (I have a staff of more than 30, and the only one I know is working for sure is ME!) Anyway, if so, I will get her to put up a new slideshow of Jake's last earthly birthday. I absolutely love his third too, so I will have to post some of that birthday too. It was just before his liver resection, and he was so chubby (steroids)and so happy. We had a very special Spongebob birthday party right there in the community kitchen at the Ronald McDonald House. It is a really cool memory. However, I still can't watch Spongebob.... just one of those things... I am sure Staci and Don have lots of "those things". That just happens to be one of mine. I will also try to put up some pictures of Christmas at the Raborns. Todd and I were invited, even though we are not "blood relatives". The Raborns, of course, are Staci's in-laws.. but I will tell you what... when a family goes through what this family went through, it BINDS you! SO, blood schmud. We are FAMILY! Our Christmas at Aunt Bonnie's and Uncle Chris's was really fun. You won't believe how much all the kids have grown. Oh, and of course, Ellie is BEAUTIFUL. Sorry, Don, I couldn't stop my fingers from typing that!

Speaking of Ellie, she is now sitting all by herself. She has learned that if she throws something down, mom will pick it up. She also figured out, today, about splashing the water in the tub. Maddi is just starting to smile and even laugh at loud a little. She is so petite, and Staci says she has her and Don's "bone structure". WHAT-ever! She is starting to roll over and has rolled off the ottoman. I may have to call social services, S-T-A-C-I! Maddi bought Ellie some Ugg Boots for Christmas, and Ellie bought Maddi some leapord skin loafers. These girls are true fashion plates.

Lest anyone forget... both Brent Nason and our buddy, Kail, got their angel wings on January 1st. Kail in 2006 and Brent last year. Kail's mom is actually getting married this year on that day, and Brent's family will be getting through the one year anniversary in a couple of days (ms/brentnason). So, aside from remembering our family on Jake's birthday, remember Kail and Brent's families on their heavenly birthdays. Also, our girl, Madelyn Beamon, is struggling, and having been there, I know her family would like to know they have your support. Please go visit them at tn/madelyn.

Well, hang with us. I will try to do better on timely updating. Have you heard the Johnson and Johnson commercial, "Having a baby changes everything."? Well, that kinda sums it up. Happy New Year to you all...and HAPPY BIRTHDAY TO MY SWEET, SWEET, PRECIOUS, ANGEL BABY, JAKE!

Mo

Tuesday, December 18, 2007 11:07 AM CST

A little Christmas gift from us to you!

We "believe" in the miracle of Christmas.

- Mo

Sunday, December 2, 2007 9:02 PM CST

Well, what can be said?! Again, very inspiring and very touching to be part of such a special weekend and special event. Thank you to Karl and Dawn who once again organized a big ol team and both ran 13 miles to remember our little angel. There were several people who ran the whole marathon for the first time and one (poor Lindy!) who was in the emergency room today with stress fractures in both feet! However, I know she was moved to the point she couldn't even look at me or speak as she ran in front of St. Jude at mile 24. Valerie, I found it an honor to run up that hill with you. It was so cool to see that sea of gold at the pasta party where TEAM JAKE again had the honor of top fundraising team in the country. I took LOTS of pictures and even got some video to share this year. I look forward to putting it together with some still shots to make a cool video for everyone to enjoy. And for that Believer who saw 11:11, well so did I (twice) this weekend, as well as 9:11, 2:11, 3:11, and so on. I just kept on seeing it. I had to tell Hunter's friend, Chase, about the significance of that number, and told him that we would likely see it a lot over this weekend. As we were leaving Memphis today, I looked at the clock, and there it was, I said, "Look Chase, Jake is telling us 'Job well done.'" and lo and behold, "I Believe" came on the radio at that time. WHoa! That sweet little angel! Zohnn, I cannot believe that was you who I met. I thought you said, "Shawn" when I met you and never even put one and one together! I am so sorry that we never connected after the start of the 5K. We had a blast cheering around the course. Michelle and Charlene, thanks for hanging out with us and dealing with our "organization". ALso, special thanks to those who helped me put out the signs and pick them all up today. I can't even begin to tell you how many comments are made around the course by the runners who say things like, "I knew we could depend on TEAM JAKE to be here." or "Thank you guys for being here to cheer us on." or "I would run even farther for that boy." All just enough to ensure that we will be there again next year and every year, as long as we can get it all together and make the trip. LOOK, you plan to be there next year! We are going to start planning earlier in 08. Ohhh, and I heard a rumor that Jake's cousin, Madison, placed in the 5K... way to go, big boy.

SO, here are the "26 things to ponder". Provided for our team and shared with others who may have needed some encouragement as they were fatiguing. I actually have a picture of Lindy at moving toward Mile 25 with three 8 1/2 x 11 sheets rolled up in her hands. I have to think she knew exactly why she was running!

1. Perserverance. Through obstacles come lessons, and if you look for them blessings. Our family has endured a lot. Because we believe in Jesus, we know we will see Jake again. We are thankful for his life and for the heaping portion of mercy that has been poured on us to endure and persevere! And now, a year later, our lives are blessed! Be thankful for trials for in them sometime come your biggest blessings. Jake was such a blessing!!

2. Legs: Many kids at St. Jude lose theirs due to bone cancer (osteosarcoma) and we watched a dear friend from home, Ashley, lose hers. Ronnell lost hers too. In fact, both of them ultimately lost their lives. You are running today so that there is a cure found for osteosarcoma. Other kids may lose their legs, but RUN, RUN, RUN so that they may NOT lose their lives

3. Lungs: Lots of pediatric cancers move straight to the kids’ lungs. Jake had 5 different lung surgeries, with three of them requiring him to be opened up, his ribs spread, and a surgeon’s hands in his lungs, compressing and feeling for any tumors to be removed. He was sore, but he kept his fighting spirit. Be thankful you have the lungs to breathe and run.

4. Good friends: Be thankful for the friends who supported you to get here today. Those who contributed to the cause financially and emotionally. Think about a few really inspirational friends and give thanks. We had a HUGE network of friends who helped financially and who would travel 10 hours in a weekend to come visit for emotional support. Jake appreciated every card, every matchbox car, every bag of M&M’s he received. Be thankful for your friends.

5. Partners in Hope and generous donations: Because of people who give to St. Jude, cures are found. And because of this, we have Carson, Corbin, Allen, Shelbi, and Brady, among others who are going to get to grow up and be what they have always wanted to be. For this mile, give thanks to all the people around the world who give to St. Jude. And commit to supporting St. Jude for the rest of your life… TEAM JAKE 2008… Be there!!

6. Eating: Did you ever realize what a blessing it is to be able to eat? Look right at mile , there is TJ Mulligan’s, one of Jake’s favorite places to eat. He always knew what he wanted to order, but could never even take a bite. He would hold a cheese stick or chip and did not want you to eat his or take his plate away. Bless his little heart. Chemo destroys the normal sensation of taste and often anything that DOES get down usually comes back up. So, today you run so that kids can eat French fries! And M&M’s!!

7. The ability to walk: Jake only walked about 8 months of the 2 ½ years he was going through treatment. However, he never complained. He crawled many a mile through the house, and we crawled with him, letting him “chase” us and play hide and seek on his knees. So for this mile, Be thankful you can walk. Take long strides, focus on your feet, your knees, your hips. Thank you, Jesus, that although they may sometimes hurt, they always work!

8. St. Jude: The slogan at St. Jude is “hope”. Imagine being told your child has cancer and for the most part there is no cure. Then, imagine entering a place where “hope” abounds. Everyone is obviously doing their best to see that your child survives. This hope that was given is why our family continues to support and love St. Jude and all the people in it. Be thankful for St. Jude.

9. An immune system: You never give it any thought, but you should be thankful that it allows you to be outside today and everyday without contracting a “bug” which could kill you. Be thankful that you don’t have to wear a mask every waking hour. Jake, and all the kids who take chemo, have to endure daily shots to help with the recovery of their immune systems after chemo destroys it.

10. Target House: You will be running by this palatial apartment style setting after the park and around Mile 10. Be thankful that there are big corporations who still have a heart for giving and sharing. The Target House is HOME to many kids, some for up to three years, and will house up to four from their families. Jake LOVED the pool table and the trikes on the playground. He also used to race to be the first to push the elevator buttons! Be thankful for the Target House.

11. Ronald McDonald House: Be thankful for this charity. It was where there is a “commune” style of life which is nice to a family who has this new diagnosis. Families can share experiences along with the pots and pans. Kids meet other kids going through the same trial. You should try to visit it here in Memphis. Be thankful for the RMH.

12: Nurses: The nurses at St. Jude have the arduous task of not only taking care of the kids, but also the families. They are often the ones who explain treatment, watch the child while the mom runs down to eat dinner from the vending machine, and bring lollipops and stickers when the treatment is getting tough. Be thankful for St. Jude nurses.

13. Living at home: Imagine leaving your healthy kids and working spouse two states away for completely unknown periods of time. Jake was first admitted to the Ronald McDonald House, because it was thought his stay would be somewhat brief. However, after the first year, it was realized that this would be a much longer situation and he and Staci were moved to the Target House. Be thankful you get to return home, WITH your entire family, after this weekend.

14: Transportation: Just as you may have prayed for traveling grace today for your own family, consider the weekly (and for some working parents) daily trips to St. Jude. Our own family had 10 hours per trip to see Jake, and we did it on a weekly basis…for over two years! Pray now for all of those kids and families getting on planes, into cars, and for some a bus ride back to St. Jude where they may be indefinitely. For this mile, Be thankful for our local Angel Flight who is always willing to help kids get to their appointments. May they always be safe.

15: Play areas of St. Jude: Jake absolutely LOVED the “boat” and the jukebox on the second floor of St. Jude. These areas are play areas, full of toys to be taken and enjoyed back to the room or right there in the “boat”. Many toys are donated, and there is a team of Child Life experts whose job it is to keep the atmosphere upbeat and fun. There is a daily craft, and they will go though hell and high water to get the kids’ favorite movies or little figurine. When most of the cancer life is scans, injections, and chemo, be thankful for the “fun parts” of St. Jude.


16: Best doctors in the world: You may think you know your doctor. But, have you had to put your or your child’s LIFE in their hands? At St. Jude that is what every parent does EVERY day. We have to KNOW that St. Jude hires the best and most qualified doctors in the world. Some pray with us. Some hug us. Some are distant, and yet we are thankful for their forthrightness, as it gives clarity to a situation. On this mile, will you praise God for St. Jude doctors?

17: Chemo: Funny that we should be thankful for it, huh? But because of it, we got an extra 2 years with Jake. It was life sustaining for him as it killed cancer cells. It is Poison! It definitely kills lots of healthy cells too… including blood cells. That is where 200 or so transfusions come in! You are running so that if a kid has to have chemo to beat cancer, then strides are made to find chemos that won’t beat the kid! While running this mile, Pray for protection for every kid taking chemo today.

18: St. Jude: At mile 4 and again at 24, you will be seeing the hospital. Inside are people who are clinging to the hope that their child will survive today. We have been there. I used to hold my hands up to the ICU windows every night as we left the hospital and pray toward it that Jake would make it through the night. He did every time. There are others who are getting their “No Mo Chemo” parties today. This is why you run and why you raise money and awareness for St. Jude. Be thankful for this hospital

19: Equipment: Only when you have a kid with cancer can you be truly thankful for PET scans, CT scans, and MRI’s which allow for early detection. These tools are used to see the most microscopic of disease and provide an avenue for treatment before it becomes problematic. They give a non invasive means of seeing the problem without AGAIN having to be opened up. Be thankful for technology that allows doctors to plan treatment. Today, you run so that more may be purchased and strides can be made for newer and better tools to treat kids with cancer.

20: Unity: Look at all that purple and gold! Can you believe the team of Believers who came together for a single purpose? Can you believe Jaek touched so many lives” As you run, think about the comradery of our group. Be proud that we are all here for a common purpose. During this mile, think about the pasta party. Think about the fact that over $100,000 was raised in our little community for the Jake Owen Raborn Foundation which now helps kids with cancer all over the world. You are a part of this cause! Run! RUN! You can do it.

21: Chest: Look down at yours… is there a tube hanging out of it? Do you have to have medicine put in a port every single day? Do you carry around a “backpack” to keep your body hydrated against the damaging effects of chemo? Probably not. Lots of kids at St. Jude see this a daily routine. You run today so they can get their ports out. … so they can take a bath… so they can swim with their brothers! Jake wore his buddies with grace! He was a warrior. Are you?! GO! GO! RUN!

22: Bloodwork: There is always a “number” that is critical to a patient’s survival. Jake’s was his AFP. At times, it was his potassium level or his sodium level. We watched those numbers like a hawk. I still have my list of every AFP that Jake was ever given as we grew hopeful when it shrunk, then faced reality as it grew again out of hand. Be thankful you never have to worry about your “numbers” . Do you know what your AFP is today? And by the way how is your white or red blood count? Thank God, you don’t even know.

23: Grizzly House: Here it is at mile 23. Look at it. This is where kids are housed when they are first brought to St. Jude. I, personally, will never forget that day. It is for short term housing needs. Can you imagine the fear in there right now? Be so thankful, that although you are hurting right now, you are hurting OUT HERE… and you are not IN THERE with a sick child. Thank you, Jesus, for the Grizzly House and protect the children inside.

24: Heart: I know that right now you are depending on yours. Not only from a physiological standpoint but from the “heart” and determination it takes to complete a marathon. You should be seeing Jake’s family now. We are here for you. You are here for us! We honor the heart it takes to train for this and to complete this. We want you to remember the HEART of Jake. The strength of Jake. The humor and spirit of an unbelievable little champion. You can do it. RUN!

25: The blessing of children: ALL kids are gifts. In the halls of St. Jude the spirit of the children is what keeps the adults sane! They have an innocence and many do not know the gravity of the situation. They just know it is THEIR situation. I remember Jake telling me that when he grew up he would not have to go to St. Jude anymore. He just thought it was what all little kids did. And since his brothers weren’t there, then they must have “grown up”. Remember that your children are gifts. Handle them with care! And be thankful! Jake’s family thanks you!

26: Jake’s LIFE: OK, you are on the final stretch. This is where it is time to reflect on the reason you signed on for this run. JAKE. He had a very influential 4 years, wouldn’t you say?! He impacted people all over the country. Your legs are burning and you feel like you are pushing a freight train… and it is to honor a great kid’s life! Keep going. You can make it. We will see you at the end. THANK YOU.

WIll post pics as soon as you know who can do them for me. What would I do without Jessi?!

Mo

Saturday at the race:

Ok, 6:10 am, and all the banners and signs were put out thanks to the PR crew last night, consisting of Krystal and Ron Payne, Lindsay and Vicki Perry, Charlene and Michelle, sho drove up from Homer, LA, just to cheer, and me... The runners will be excited as they see pics and words of encouragement from Jake and the Jake Owen Raborn familya nd foundation all around the course. Leave a word or two of thanks or encouragement for the poeple who have been up at 4am for the past few months training for this so that funds will be raised to help CURE pediatric cancer.

I will be posting the "26 things to ponder" which is the list used to motivate and inspire our runners all the way to the finish. If you are up and at em this morning, pray for their endurance and perseverance. Also, for good weather, no injury and travel grace. Thanks... mo

Thursday:
Official information coming to you from Cap'n Karl. He said we should plan to be at the Fed Ex Forum at 6:45 am on the morning of the race. Hopefully, we will meet you all there tomorrow night also, because we hope our WHOLE team gets to be at the pasta party, as we may well be recognized and it is always a nice show of solidarity to have the whole crew there. Don't worry if you haven't raised you money, I think we will have enough for everyone if we share our fundraising. We will be passing out the running shirts ( I know it is very late, but hey... we are last minute kinda folks. Then, on Saturday morning, I am sure we will have some words of encouragement and a prayer to kick off the very inspirational day before the 5K starts at 7:30 about a block or so away. I am going to try to get together some 26 points to ponder as the marathoners make it the whole way. If you are going as a cheerleader and would like to help with putting up banners or signs, bring your scissors and twine, adn call me when you get there. 318 3767676. I will get you an assignment! Also, we typically have our first rooting point inside the one mile mark at the straight away up the hill from the starting point. It is across from a big church and there is plenty of parking. I don't know street names! We get there from Danny Thomas Blvd, and turn down by WEndy's (across from Poplar) and park at the end of the road. From there, we head back up that street and down Poplar to the corner right at LeBonheur Hospital. There is a convenience store at the same corner where we all park. Then, marathoners be looking for us at St. Jude (really on the corner at The Grizzly House) when you are trucking it around mile 24! You will be glad to see us and we will be glad to see you. Oh, yeah, for the half marathoners, we will also see you at the top of the hill just across the street from the pyramid. I am writing all of this to let any of you who may want to gather together know where we will be. First the church during the 5k, then the pyramid for the 1/2 marathon, then Poplar at the corner at mile 12, then, at the Grizzly HOuse for the full marathoners. WEar your TEAM JAKE shirts! If you don't have one, don the purple and gold! WOo Hooo. See you there... glad it all worked out for you, Zohnn. And Hey, Dawn, can't wait to see all of you. Mel


Wednesday night update.

Wooooo Hooooo... are you ready to RUMBLE?!

Hey all you runners, walkers, and cheerleaders, we are ready to roll! I have to go buy my windshield paint to let everyone up I59 know who we are going to run in honor of. Pops has made lots of banners and signs, so we are ready to decorate that course! Runners, be on the lookout, because we will be supporting you the whole way. I know that Valerie is running her first full marathon (are you Dean?!) and I think there is another person at her office who has been training to do so as well. Karl is a little down in his back, so he is "only" running 13.1 miles. Dawn, our other TEAMJAKE leader, is also running a half this year. I have heard of a little crew of girls here in West Monroe who have been getting up at the (butt)crack of dawn to train for the half. Way to go Tammy and crew. You ROCK! I talked to Bubba Greg (our pastor), and although he is not going to be there this year, he is committing to the full marathon next year and has recruited a whole team of supporters to run the full 26 with him. Ok, and we know pastors can't fib... so start the training, Bubba Greg! His wife and I are putting it out there too, that we can do the half. Oh my gosh, only 40 pounds post lap band and I think I am a triathlete!

As I type, Don is feeding me a Jake story about the marathon. It was 2005, and Staci, Don, Jake, and the big boys went to the registration area to pick up packets and look around at all the excitement of the pre race chaos. They went back to the car, got in and buckled up, and in the midst of total silence, Jake says, "Man, what a day!" That boy was a hoot. And it is for him that we will make this trek to Memphis EVERY year.

OK, speaking of TEAMJAKE THIS year, yep... as of today, you are affiliated with NUMBER ONE fundraising team of this year's marathon. This may change, but today, the honor belongs to our boy's team. The Foundation and all who support it has contributed to St. Jude in a big way. ALso, thanks to all the TEAM JAKErs who have worked to raise money and make this year almost as big as last year. You still have time to donate to the cause, just find a team member who needs a little help to meet their goal, and send it their way. believeteamjake.com

For all you guys going to Memphis, their are runners shirts to those who put their order in with Dawn. She plans to have the shirts available at the pasta party on Friday night at the FedEx Forum. I am not totally sure what time the pasta party starts, (nevermind, Don just looked it up)... So be there between 6:00adn 6:15 to get your shirts and meet your team! We want to see everyone in their gold and purple shirts for the race on Saturday. It was quite a sight last year to have that sea of gold starting the race. It also lets the cheerleaders see the team members coming from way down the road. May I add that MY buddy from last year, Eddie Enlow, is back in the race as it seems, is his wife, Stacey. You go, girl!

Jodi, looks like we won't be doing balloons, unless I can figure that one out between now and Saturday. I just might! We will also be planning how all the cheerleaders will get organized for signage and placement along the route. EVERYONE try to be at the hero party. I LOVED having us all sitting together last year and receiving recognition in memory of our sweet little man for continuing to support St. Jude financially. I know Jake is proud of his friends, family, Believers, and hometown!

Speaking of hometown, anyone who wants to know more about West Monroe, watch ESPN or ESPN2 tomorrow night to see Varsity Inc, which is a reality show highlighting our team for this football season. I digress...

OK, paint your cars, paint your faces, buy your earmuffs, and get ready for a VERY INSPIRING weekend in Memphis. We love you all and appreciate your continuing to check in on our family and remembering Sweet, Sweet Jake Owen Raborn.

MO

Oh, can you believe that I forgot to mention the girls?! Yes, they will be there. Staci and I are trying to figure out how to keep them bundled up the best. They have teeny tiny Uggs and we will have them tucked up in a stroller! They will be available for sugar. Trish, you coming for that head suga?!

And, I failed to mention thanks to all of you who went to eat at Portico to raise moolah for St. Jude. There was over 5000 bucks raised that week. (Not all for TEAM JAKE), but we were stoked that TEAM SHELBI, TEAM CORBIN, TEAM ALLEN were also represented there and will have crews in Memphis. Do you even know how COOOOOOOL it is going to be to see so many people supporting our kiddos iat the race?! The money raised is still supporting Shelbi and Allen who are currently undergoing treatment... and as for Corbin, Well, I am just going to say HEALED! thanks St. Jude.

ANother P.S.... go to Emma Grace's site and see the really cool picture of Staci and Trish at last year's race. www.caringbridge.org/ar/emmagrace
How cool that they will be there, as well as Chrystal's crew, and I failed to mention Carson's crew from Shreveport too! Hey, Kim, can't wait to see you and your whole passe. Mel

Sunday, November 11, 2007 10:48 PM CST

UPDATE: Mo & I both updated last night. I've pasted my update on here also because it includes info on how to order TEAM JAKE shirts. They will not be on put on the website because of the short timeframe invloved. Thanks for always checking on us.

Don




Sunday, November 11, 2007 10:22 PM CST

Hallie Beth Gravelle earned her angel wings earlier today. She battled for over 4 years. Please keep her family in your prayers. Her website is www.caringbridge.org/la/hallie

Staci & I went to St. Jude this week. It was our first time back since we left with Jake. We were both a little nervous walking through those doors but it turned out to be a great visit. We saw so many people that took such great care of Jake. It really did both of us some good to go back and visit. It truly is a special place.

TEAM JAKE shirts have been ordered and will be here around the 24th of this month. We're sorry that there late but Madison is keeping us busy. The shirts are $12.00(includes shipping) and we will have them in kid sizes YS - YXL and adult sizes S - XXXL. They are long sleeve. If you would like a shirt please send a check with your order to:

Jake Owen Raborn Foundation
Attn: TEAM JAKE
PO Box 3097
West Monroe, LA 71294

We will send the shirts as soon as they get here.

Speaking of TEAM JAKE, there is a great fundraiser that will take place this week (Nov 12th - 16th) at Portico Bar & Grill here in Monroe. Portico will donate all of their profits from lunch and dinner to the 4 area teams (Allen, Corbin, Jake & Shelbi) that are participating in the St. Jude Marathon. Go eat at Portico all week and let them know you're with TEAM JAKE. A huge thanks to Portico for this great fundraiser for St. Jude.

Maddie is doing great. She is so sweet. The boys are fine. They are growing up so quick.

Talk to you soon.

BELIEVE,
Don






MO'S UPDATE BEGINS HERE

Hello Peeps.

I wantt to spend some time on the update, but it is getting late (in fact, I should have waited a few minutes so it would be 11:11 on the 11th!), and I have to be in good ol Eldorado, AR, bright and early in the morning. I am not the morning person, so I may have to keep it to the "biggies".

First, this week a local eatery, Portico, is having a promotion for anyone who would like to donate to TEAM JAKE or any of the other local teams who are representing our area and the local kids who have been at St. Jude. I am not totally sure how it works, but I think there is a form that can be filled out at the restaurant to designate who you would like to get "credit" for the visit. Jake's team has a goal of $50,000, I believe. There are fewer runners this year, so they really need your help to meet that goal. Make plans to take your family out this week. THat way, you get to have a night out for dinner and still help TEAM JAKE and ultimately St. Jude. I thnk the Raborn family will be represented every night. Since I don't cook a lick, Todd, Ellie, and I may be there every night this week! In fact, I am considering having a drive thru window (for Johnny's Pizza delivery) put in our new house in place of a kitchen! But that is another story. We hope to see you there.

Speaking of TEAM JAKE, the new tee shirts have been designed and are going to be so cool! We are sticking with the purple and gold team (Jake's favorite team colors, you know!), but the back is a play on the MasterCard commercial... "priceless". Hold on to your hats for the big reveal. Be checking jakesfoundation.org for the shirts to be available.

Our buddy, Hallie, joined Jake in Heaven today, so please say an extra prayer for her family this evening and the many tough days to come as they learn to live without the special little girl in their lives.

Ooooohweeeee... we took some C-U-T-E pictures of Ellie and Maddi lying together yesterday. they are all snuggled up and even look like they are holding hands. Again, it will be Tuesday before I can get Jessi Mae to put the pics on the site for me. I promise I will get a new slideshow for you. ALso, any requests on what timeframe you would like to see of our dear Jake. I have some good ones from Thanksgiving 2005. He felt good, but was slick headed as they come. Maybe we can look for those. I was telling Staci today how it is so hard to believe that it was only October of 2006 that Jake went to Heaven. It seems crazy to me because it seems like YEARS ago since I played with him. I also can't get over all that has happened in a year. In only a year, we are now both pushing baby strollers, Staci and Don are millionaires, the Jake Owen Raborn Foundation has helped lots of families through financial support, and may I also mention, Jin is sporting around in a convertible. Our family has been showered with blessings in such a short time period. However, as you all know, and goes without saying, we would give it all up for more time with Jake. But... we don't decide how our lives will be. We are just to trust and obey. So, God has chosen this route for the Raborns now, and it is this path they will follow.

Thanks for continuing to stay in touch with Jake's website. I promise to keep on updating as long as there are people reading! Oh, and if you are available on the first weekend of December, come on up to Memphis. Staci and I are proof positive that you do NOT have to run to go up there and have fun. There is a big banquet the night before the race and we would like to have a big showing in memory of our hero, Jake.

More later.....

MO

Sunday, November 11, 2007 10:22 PM CST

Hallie Beth Gravelle earned her angel wings earlier today. She battled for over 4 years. Please keep her family in your prayers. Her website is www.caringbridge.org/la/hallie

Staci & I went to St. Jude this week. It was our first time back since we left with Jake. We were both a little nervous walking through those doors but it turned out to be a great visit. We saw so many people that took such great care of Jake. It really did both of us some good to go back and visit. It truly is a special place.

TEAM JAKE shirts have been ordered and will be here around the 24th of this month. We're sorry that there late but Madison is keeping us busy. The shirts are $12.00(includes shipping) and we will have them in kid sizes YS - YXL and adult sizes S - XXXL. They are long sleeve. If you would like a shirt please send a check with your order to:

Jake Owen Raborn Foundation
Attn: TEAM JAKE
PO Box 3097
West Monroe, LA 71294

We will send the shirts as soon as they get here.

Speaking of TEAM JAKE, there is a great fundraiser that will take place this week (Nov 12th - 16th) at Portico Bar & Grill here in Monroe. Portico will donate all of their profits from lunch and dinner to the 4 area teams (Allen, Corbin, Jake & Shelbi) that are participating in the St. Jude Marathon. Go eat at Portico all week and let them know you're with TEAM JAKE. A huge thanks to Portico for this great fundraiser for St. Jude.

Maddie is doing great. She is so sweet. The boys are fine. They are growing up so quick.

Talk to you soon.

BELIEVE,
Don

Tuesday , November 6, 2007, 7:06PM CDT

Hello Jake's Believers,

This is PawPaw Raborn and I have hijacked Jake's journal for something that I think that I think Jake would want me to do.

There is a little girl from the local area back at St. Jude that sure could use some extra prayers from all of Jake's Believers.

Her name is Hallie Beth Gravelle from Winnsboro, LA.

Her CB website is caringbridge.org/la/hallie

I know she and her parents would really appreciate your prayers and guestbook visits at this time. She is in much pain and I don't know exactly what the prognosis is at this time but please, please pray for her and her family at this time, go to her site and leave them a message of encouragement.

Unless you have been there, you don't know just what seeing a little message on a guestbook can do for a family in a crisis. And of course we all know what prayer can do.

So please, please do as Jake and I ask, call and e-mail your friends and ask them to pray for her and her family and leave a message on Hallie's guestbook and tell them Jake said to tell Hallie hello.......

Thank you all so much...
PawPaw and Crawford Raborn




HAPPY MERRY CHRISMAWEEN!!

Yep, in honor and loving memory of our sweet angel, Jake, we must acknowledge the last holiday he had on earth and one that his mom and dad celebrated in a big way. Do you all remember his orange and black Christmas tree? He walked in his house and you could see his excitement. I remember his dad carrying him in and Jake was so weak, he could hardly lift his head to look at it on his own. Don carried him around the room and let him check everything out with his little had and neck supported on his daddy's arm. I remember that evening clearly. Jake was coming home on "hospice", but we were not going to have him come home to sadness. As EVERY time he came home, we celebrated!

Tonight, there was a new little Raborn Trick or treater. Miss Madison Hope went to Halloween at Emma Lou's house, dressed as a dragonfly. She had a cute little costume, but her antennae and big eyes on top of her head were icing on the cake. Naturally, Ellie Sue was a tiger... and ELLIESUE Tiger! Hunter and Hayden have officially hit the "too cool to be dressing up" age. So, no fun for ol' Aunt Mo who LOVES pictures! Speaking of pictures, you know I got you all the hook up. I will be posting them as soon as Jessi can retrieve them from my card and put em in slideshow format! Good ol' Jessi.

Staci, Jin and I are planning our first all girl trip (because we are also going to include Ellie and Madison) this weekend to the big flea market in Canton, TX. I think we have lost our minds, but I suppose at one month old, Madison is ready for some big time shopping. Don would be happy to keep her under usual conditions, but he has to work this weekend, so we are going to be troopers and get er done. We hope to get started toward some Christmas presents. I told mom, as both little ones were screaming tonight, that it will be interesting, because we are stressed, we just head toward the funnel cake booth. With them, we are going to have to regroup, make a bottle, find a surface to change them on, hmmmm.... should be an interesting weekend.

Ok, well here was a quickie little update. I will get some new pics on here as soon as possible. I will also try to find a pic or two of Jake's first Halloween. He was a frog and his brothers were some kind of creepy Ninjas. I think Hayden went as a Ninja for something like 4-5 years in a row! Glad he is out of that stage. I remember this Halloween clearly too. The big boys treasured their little brother and took him right under their wings to teach him all about trick or treating. The pictures will speak volumes. They were such great big brothers.

Thanks to all of you for continuing to check on Jake's family. We truly appreciate the love and support. We have the big St. Jude race coming up in December, and we DEFINITELY still want to make a statement in Jake's memory. We need a big crew to be in Memphis and pack a big purse for all the kids who are still there and fighting. The TEAMJAKE goal is 50,000 dollars. If you are interested in donating, please visit believeteamjake.com Also, remember you can also go as a cheerleader. That is how I go.... I just hang banners, hold signs, and make sure that my sweet nephew's name and memory lives ON! We will have signs for you all.

BELIEVIN'...
Melanie, aka Mo

You need to read!!

I've got GREAT news for Jake's Foundation! After the donation that the Tug McGraw Foundation (Tim's Foundation in memory of his dad) gave to Shake4Jake, I've been in contact with their Team McGraw Coordinator Jeff. They fell in love with Don and Staci and Jake's heroic effort! The New York City Marathon is coming up (November 4th) and NYC has reserved 25 spaces for runners from "Team McGraw". The only way to get a spot in the LARGEST marathon in the the USA is by a lottery! Team McGraw is running in memory and in honor of patients that have been diagnosed with brain cancer. GUESS WHAT?!?!? Our Jake is one of them!!! Sweet Hilary Polk Williams will be running in memory of Jake.....with Jake's name the entire 20 miles! Please visit her website! Send her some emails of encouragment and motivate her! HOW AWESOME is this for the foundation!?!? Ok, believers, let her know we are behind her 100I'll let you in on more info, we can keep track of her during the race on mile markers as she passes them (via text messages!). I'm so excited! Please visit her website http://www.active.com/donate/teammcgraw/HPolk-Williams
Her email is hpolkwilliams@michaelflutie.com
NBC Sports will broadcast a one-hour highlight show nationwide beginning at 3:00 p.m. EST on November 4; check your local listings for details.
Faith Gremillion



OK, be on the lookout. TOday, we will be posting a slideshow with your royal highness, Miss Madison Hope Ann Raborn. Of course, because I am in charge of the slideshow, she will be featuring a few pics of her be-a-utiful cousin, Ellie Sue Groves. These are pics from the pumpkin patch. Ellie is 3 months old, but because of her body cast, the pics are of her standing up against the pumpkins or straddling them. There is no way for me to BEND her! Staci and Don's little munchkin is the one draped across the pumpkin. We laugh because we were all expecting her to be this big ol giant baby, and now she is here, and is so petite! As Staci and I like to say, "Well, what did you expect from "petite" Don and Staci?" I guess she got our "small bone structure". Ha Both girls are doing great. Madison needs to learn that she is not a vampire and go to bed AT NIGHT! We found out yesterday that Ellie gets her cast off on Halloween morning, so now she gets to wear her Tiger costume (that's right, all you Texas and Miss. State fans) instead of going as a slingshot which had become the backup plan. I dont' know if Stac has decided on Madison's. I know she has several options! Oh, and I think I will ask Jessi to slip in a few of our precious little man on the first trip to the pumpkin patch after diagnosis and stinkin chemo. This day is etched in my mind forever. He was so accomodating, smiling and posing at only 2 years old. He was having a good day. As for us, EVERY day with Jake was a good day! Happy Fall!! MoMo



SUNDAY - 10/14/2007

Many of you have show an interest in donating to the Foundation through the United Way. Here is the info that you will need:

Jake Owen Raborn Foundation
PO Box 3097
West Monroe, LA 71294
(888) 356-5253
Contact Name: Don Raborn
Tax ID/EIN - 20-8477543

Madison is doing great. I promise pictures of her soon.

BELIEVE,
Don





Well, I really hated to change the update, because I really liked what Aunt Bonnie had to say, and of course, I always like any heartfelt senitment from Daddy Don. I ate dinner tonight with Don, Staci, Madison Hope, Ellie Sue, JinJin and Todd, and told them about the new slideshow. Don said "go for it" about changing it out, so here goes...

Well, around here... it is baby girls everywhere. In fact, I am lying next to one right now who needs CONSTANT attention to the paci that keeps falling out of her mouth. I am going to invent some sort of stretchy band taht goes around behind the baby's head and keeps that sucker in the baby's mouth. That product, in itself, should save about an extra hour of sleep for the mom and dad per night. I was laughing at Miss Madison tonight as she squinted her little eyes when her daddy was toting her in her carseat to the car. She was barely opening her eyes as if to say, "Hey, what's up? I have a loooong night ahead of me, so let's keep the motion down, please. I need to get my sleep, so I can get up around midnight... for the REST of the night." Yep... no sleep at the Raborn household! Thank you, Jesus, Ellie SUe is now sleeping through the night. Imagine bluebirds flitting around and landing on your shoulder. That is how happy I am about this!!

Hunter is playing football for the middle school, and I hear he is doing pretty well. He is playing offensive line, but he really wants to be a linebacker. He played that position a couple of years ago, and I was told he was a standout! However, lesson learned... if you dont' keep playing, you lose your position! Maybe he will earn it back by hte time high school rolls around. Hayden... hmmm. I don't know what he has been doing. He does LOTS Of texting, has LOTS of female friends, and is really into rap music... DESPITE his mom's insistence that he doesn't listen to it. HE is making MUCH better grades this year, (he is repeating 5th grade).

Staci and DOn have gotten LOTS of interest in the JOR Foundation. They have received requests for assistance from Children's Hospital of New Orleans, St. Jude, and Cinncinnati Children's Hospital. That is awesome that these national hospitals are learning about the foundation and getting the word out. However, because there is a specific budget, we have to be careful about who receives assistance. Staci has called the social worders and asked them to provide her with a name of the MOST needy so they can be the earliest recipients. Well... that brings me to this. We need to be raising more money for the foundation. We had an AWESOME start with the SHake 4 Jake. Then, this past weekend, Uncle Todd, Uncle Eddie and Big Daddy DOn did a good job with the first annual JOR Foundation golf tournament. I expect this event to just gain steam and be bigger every year. But, there is a way that you can help. The merchandise is on the jakesfoundation.org website, and when you buy, you support the foundation to help MORE of these kids with cancer whose families are asking for support. And another thing you can do is this... If you presently are giving to the United Way but have not been specific about where your money is allocated, call your local office and see if you can specify it go to the Jake Owen Raborn Foundation. From what I understand, anyone can contribute to this foundation if it is a 501C3, and JOR IS! So, if interested, call your local office and ask; then if you still have questions, contact Don and he can probably help you. Be a part of changing people's lives! I will see if Don can get permission from a lady who sent him a VERY heartfelt letter of appreciation for the "blessing" she received when she was at her absolute lowest. She has a child with cancer and had someone request assistance on her behalf. No one can relay her feelings the way she did in her own letter, so I will see if Don can get permission to put it on this site. It will certainly encourage you to support Jake's FOundation.

OK. Now, one more important thing. Jessi has designed some really, really cute cards with Jake's name and websites for anyone who wants them to use on Halloween handouts. We offered these last year, and MANY took us up on the offer. If you are planning to do the M&M thing, email Jessi at mmptruston@mmptinc.com and request the sheet of cards. WHen she emails them to you, just print as many as you need and slice em up for your Halloween treats. THey have the pay it forward information on the back, and she used the picture of Jake from the Foundation on the front. They are really cute! I will be using them on my goodies!

I promise, I will get a picture of Madison soon. She is so cute. Looked a lot like DOn at first, but she is getting over it. (I make it sound like a rash) SOrry... just kidding, DOn! She is gorgeous. Tonight's slideshow is from the pumpkin patch in 2005. Jake had been through a summer of no chemo, and he was feeling about as good as he ever did. I was up there visiting, and we were cruising around looking for a place to take pictures. Lo and behold, there was a pumpkin patch right in the middle of the Schnuck's parking lot. Jake felt so good, and he was so willing to pose that day. He was such a good sport! I love the one with his hands over his head, with his little fingers pointed number one. THis was a classic Jake pose! I wasn't able to get on here the week or so before October 5th, and am glad that Aunt Bonnie and Don took that one. I had to lie low, and grieve my own way. You may wonder about this... we dont' really talk much about Jake in a "missing him" kind of way. That would simply be too much of an understatement! Instead, the only thing we ever really mention about him is the funny things he did, or the things he played with or the things he said. We just don't dwell on the fact that we are sad that he is not here. I mean, DUH! We are just thankful that we all were priveleged to know him!

MO

Friday, October 5, 2007 8:08 AM CDT

Good morning.

So many things I want to say today but as I sit here and try to type there just not coming out. Staci & I are filled with emotions today.

I do have one request. Please say a little prayer at 3:10PM for all the little kids still fighting the same battle that my little hero fought.

So sorry I don't have anymore to say today other than I miss my little boy more & more each day.

Still believing that I will see him again,
Don - Jake's Dad




BELOW IS AN E-MAIL FROM AUNT BONNIE THAT GIVES YOU ANOTHER LOOK INTO WHAT JAKE MEANT TO EVERYBODY.

I sit here tonight and can only think of one thing….

what I was doing one year ago tonight.

The call came early in the day…I needed to come to West Monroe.

Jake was slipping in and out and the nurses thought all family should be there. I don’t remember the drive over there…just that I needed to get there. Not for Jake, we knew where he was going…but I needed to get there for my brother and Staci. I needed to let him know I was there.

I’ve always been protective of him but even more so since our Mom has passed on. I couldn’t do anything to make things better but just to be there.

When I got there, he and Staci were so calm. You could tell that they knew what lay ahead but such a peace surrounded you in the house. A deep, deep hurt was upon us, but such a peace knowing that Don and Staci and all the medical teams had done absolutely everything possible for Jake. Jake had been through so much…now it was time to let him go.

I remember Chris bringing me clothes because he knew I was not leaving.

I remember hearing Don and Staci’s bedroom door opening and the whole room would hush…

waiting to hear about our hero and how he was doing.

I remember the love and laughter that was shared by all remembering stories about Jake and enjoying the comfort of each other but knowing in the back of our minds what was only hours away.

I remember sleeping in the big red chair in Jake’s room, holding a Superman doll. I lay there most of the night waiting for something to happen, but mostly thinking of Jake, Staci, Don, Hunter and Hayden. I thought a lot about my mom and how comforting it was that she would be at Heaven’s Gate to meet Jake when he left.

Don’t get me wrong, we know and believe that God could have performed a miracle healing at any moment but Jake was ready. He had told us that in many ways. Jake lived a lifetime in his short four years. He had done his work…he was ready for his reward.

That morning was filled with calls and visitors wanting to pray for Jake. Our prayer for him was peace and comfort. It was time for him to go and Don and Staci did everything to make sure Jake knew it was OK to go and that he was comfortable. He quietly slipped from his Mommy and Daddy into the waiting arms of Jesus and all the loved ones waiting for him. We were left with beautiful memories and thoughts of one fantastic boy.

I consider myself sooo lucky and blessed to be his aunt. It is awesome just to hear Jake’s story but to actually be a part of his life has been amazing. I have learned countless lessons from such a young teacher.

I love to tell his story. So many are amazed at his strength and courage. I still cry sometimes but it is for me, not Jake. If you knew Jake at all, you have to smile when you think of him. You just can’t help it.

He was that kind of kid.

Amazing…

Precious…

Courageous…

Still with us in so many ways….

I love you and miss you, Jake!!

Ya Little Geek!

Friday, October 5, 2007 8:08 AM CDT

Good morning.

So many things I want to say today but as I sit here and try to type there just not coming out. Staci & I are filled with emotions today.

I do have one request. Please say a little prayer at 3:10PM for all the little kids still fighting the same battle that my little here fought.

So sorry I don't have anymore to say today other than I miss my little boy more & more each day.

Still believing that I will see him again,
Don - Jake's Dad




BELOW IS AN E-MAIL FROM AUNT BONNIE THAT GIVES YOU ANOTHER LOOK INTO WHAT JAKE MEANT TO EVERYBODY.

I sit here tonight and can only think of one thing….

what I was doing one year ago tonight.

The call came early in the day…I needed to come to West Monroe.

Jake was slipping in and out and the nurses thought all family should be there. I don’t remember the drive over there…just that I needed to get there. Not for Jake, we knew where he was going…but I needed to get there for my brother and Staci. I needed to let him know I was there.

I’ve always been protective of him but even more so since our Mom has passed on. I couldn’t do anything to make things better but just to be there.

When I got there, he and Staci were so calm. You could tell that they knew what lay ahead but such a peace surrounded you in the house. A deep, deep hurt was upon us, but such a peace knowing that Don and Staci and all the medical teams had done absolutely everything possible for Jake. Jake had been through so much…now it was time to let him go.

I remember Chris bringing me clothes because he knew I was not leaving.

I remember hearing Don and Staci’s bedroom door opening and the whole room would hush…

waiting to hear about our hero and how he was doing.

I remember the love and laughter that was shared by all remembering stories about Jake and enjoying the comfort of each other but knowing in the back of our minds what was only hours away.

I remember sleeping in the big red chair in Jake’s room, holding a Superman doll. I lay there most of the night waiting for something to happen, but mostly thinking of Jake, Staci, Don, Hunter and Hayden. I thought a lot about my mom and how comforting it was that she would be at Heaven’s Gate to meet Jake when he left.

Don’t get me wrong, we know and believe that God could have performed a miracle healing at any moment but Jake was ready. He had told us that in many ways. Jake lived a lifetime in his short four years. He had done his work…he was ready for his reward.

That morning was filled with calls and visitors wanting to pray for Jake. Our prayer for him was peace and comfort. It was time for him to go and Don and Staci did everything to make sure Jake knew it was OK to go and that he was comfortable. He quietly slipped from his Mommy and Daddy into the waiting arms of Jesus and all the loved ones waiting for him. We were left with beautiful memories and thoughts of one fantastic boy.

I consider myself sooo lucky and blessed to be his aunt. It is awesome just to hear Jake’s story but to actually be a part of his life has been amazing. I have learned countless lessons from such a young teacher.

I love to tell his story. So many are amazed at his strength and courage. I still cry sometimes but it is for me, not Jake. If you knew Jake at all, you have to smile when you think of him. You just can’t help it.

He was that kind of kid.

Amazing…

Precious…

Courageous…

Still with us in so many ways….

I love you and miss you, Jake!!

Ya Little Geek!

Wednesday, October 3, 2007 8:58 AM CDT

Just dropping in to let you know that Madison and Mom are doing fine.

Madison is just as sweet as she can be. She is so little. It is so amazing to hold her because I know my sweet little angel in heaven has been holding her and giving her all of his kisses before she made her entrance into this world. It's like I'm holding both of them.

Staci is feeling a little better each day. Like always she is the perfect mother and knows every move to make with Madison.

Hunter & Hayden are great. They love to hold Madison and both of them give her a kiss before they go to bed each night. Please say a prayer for them as I'm sure they have a range of emotions running through them.

Golf Tournament is this Friday (5th). There are spots still open. Please send me an e-mail (link at bottom of this page) if you would like to play.

BELIEVE,
Don

Thursday, September 27, 2007 9:51 PM CDT

Dear Jake,

Thank you so much for sending me my little bundle of "Hope". She is perfect.

Momma is doing fine.

I miss you more each day.

Good night sweet boy.

BELIEVE,
Daddy

Thursday, Sept. 20, 2007 9:28 PM CDT

*BIG NEWS*

MADISON HOPE HAS ARRIVED! SHE WAS BORN AT 10:00AM AND WEIGHS 7LBS. 10OZ.

This is Jessi, JinJin just called and asked me to let everyone know that.....Staci is in labor! She said that the family is waiting anxiously in the hallway for Baby Raborn's arrival. I will update again as soon as I know more!

9:56 am

I just talked to "information station", Melanie and she said that Staci is having a C-section. That means we should have a baby in the next 30 minutes or so. I will update again soon.

UPDATE Friday morning 11:30AM

Several things to tell you about:

1) Our TV show will air Sunday night 9/23 on the TLC Channel at 7PM(Central Time), The show is called "Lottery Changed My Life)

2) The foundation store is open on the website - go and order some Jake merchandise

3) 1st annual JOR FOundation golf tournament is Friday October 5th. E-mail me for an entry form if you would like to play

4) Sign up for TEAM JAKE. I will update over the weekend with detailed instructions on how to join.

BELIEVE,
Don



Mission accomplished...
Ellie Sue is casted in a hot pink cast from her nipples to her ankles. I am so glad the orthopedist left those little piggies our for me to touch. We will all survive!

Also,wanted to make sure that I came back and told you all that the picture on the home page of Jake with head tilted, huge smile, and just so much sweetness is one that we hear so many comments about. That picture was taken on the same day as the pictures in the slideshow this week. That was just a good day!

And, lastly, just for those who have requested them, I have current pictures of the "big boys". Now remember, they are teen and preteen, so there are no actual posed and smiling pics. MOre, dumb faces, eyes closed, and wrestling! Oh well, at least you can see how they've grown! I will try to post these, Ellie Sue's new "outfit", pics of STACI's BELLY (which we wrote HOPE on, using her belly button as the "O") and more Jake pics as soon as I can get it all organized and to Jessi. Would you believe after three years of this, I still don't know how to do it myself?! I guess that old adage, "teach a man to fish" doesn't really fit us too well.

Life is good... (but we still miss our JakeBoy) MO

P.S. GOoooooooo TEAMJAKE! Sign up if you think you may even kinda want to go. Yea for Zhonn. Spelled right?! Mo

Monday, Sept. 17
IT WORKED! I am going to entice you to sign in by continuing to reward you (positive reinforcement) with new slideshows of our boy when there are lots of people signing in! And for the record, Dawn Pickens, yes we DO have pictures of our two month old angel in her purple and gold cheerleading uniform. Her dad insisted we put it on for our get together with our buddies to watch the game. Her fat little self has already outgrown some of her LSU gear, and we have already passed things down to Madison Hope. And may I be the one to announce... she is coming on SEPTEMBER 28th. IF Staci makes it! That is a couple of weeks early, or so, but anyone who has seen Staci lately knows that she looks like she is about to POP. She is requesting the C section a little early because A) she wants OCtober 5th to be Jake's special day and doesn't want the surge of emotion that would come from a new baby on that day! and B) If Madison Hope is born before Oct. 1, Staci and Don have the choice of letting her start school early with her favorite cuz, Ellie Sue. If after that date, she will have to start the year after Miss Ellie. And we will likely want the twin terrors hitting school together! Watch out... they will surely be divas!

As for you, Amy from Oregon, I just wanted to let you know that in your dream, Jake was most certainly singing Tim's
"Live Like You Were Dying." That was his absolute favorite. And for the record... he DID!

Hunter and Hayden are doing pretty well. With the new style of long hair on boys, Staci had to FORCE Hayden to go get his hair cut this week. From what I hear, his hair is apparently pretty appealing to the lady folk. I swear, that boy is quite the ladies' man. I am already praying for his wife! Then, there is Hunter who will be at one party, texting friends at another, and then calling another social spot to see who is where and what is going on at all spots. He never wants to miss an opportunity to be in the know! He has actually been totally wearing himself out so much that he gets migraines and is totally exhausted. With his recent grades, he will get a little "down time" to rest... and that's all I got to say about that!

Kim, aside from "That's a Niiiice Bolster." Jake also liked when Donkey was riding in the back of the carriage with Fiona and Shrek, and being bored, he started doing the noise with his tongue. Jake thought that was hilarious. His favorite character was Donkey. He also like Dragon, and I bought him a big ol Donkey at DIsney World. He and I would say, "Sweeeet".... "To-tally!" and he would always follow that with "Noggin" and we would butt heads and say, "Duuuuuuuude"! I surely do miss him!

Well, I am glad to hear that there are people out there still working toward our TEAM JAKE 2007. I will have to have a special treat for our team when everyone gathers in Memphis. Come on, peeps, sign UP!!

Well, remember Staci and Don and baby to be. I think she is going to be somewhere in the neighborhood of 15 pounds! I laugh at Staci when she suggests I pass outfits down to her. Madison Hope may be passing things down to US! Oh, and by the way, Ellie gets to get herself a big fat body cast on Thursday. I have fought it as long as I can, and the orthopedist can still sublux it, so we are going to get this little obstacle over and done with . Believe me, casting ain't nothin compared to watching chemo go into a kid! Or... watching a baby suffer through medicine after medicine orally when they are SO SICK Of taking it! Or... having to get stuck every time they have fever to make sure it is not systemic infection. or... do I need to go on?! Ellie (and her mom) will live through this too!

OK, be praying for September 28th... the day our little angel baby joins us in the world (By the way, that is mine and Todd's anniversary! WOo Hooo).

Thanks for continuing to check in on our family. We love and appreciate you.... be watching for a new slideshow tomorrow. I think I am going to get Jessi to do a show of me and Jake in assessment and triage. It is about two weeks after his bone marrow transplant and he was feeling GREAT! SO much spirit then! I love that boy!

MO

Friday, September 7, 2007 8:57 PM CDT

Hello friends,
Hope you like the new slideshow. I remember Staci telling me about that dance at St. jude. I didnt' miss much, but I was sad to miss that party! Especially, since I heard Staci was Little Miss Disco QUeen, and Jake would NOT let her leave the dance floor. I don't know if it is in light of the upcoming milestone of Jake's one year Heaven anniversary, but I am having an especially difficult time looking at his pictures, talking about him, or even writing about him. It could also be the surge of hormones that apparently come with a new baby whether it was carried in the mom's womb or not! I so often look at Sweet Ellie and think to myself how much Jake would have LOVED holding her and babying her. He would have been such a GREAT big brother. I was telling one of my new patients about jake this morning. I was explaining that we are seeing so many things play out right now that we know are in a grand plan. Staci, for instance, is due the first week of October. (Jake's day is Oct. 5th). Instead, she has had complications, and the doc wants to schedule a C section earlier than her due date. She is throwing around the idea of Sept. 28th, which I love because that is mine and Todd's anniversary! Then, there is the fact that Ellie's exact conception date was also Oct. 5th. that is so cool, no matter how you look at it!

Staci is feeling much better now. She ws hospitalized a few weeks ago, but now is on blood pressure meds and is doing well. The doc let her come off bedrest, so life is good! Now, KING Hunter and PRINCE Hayden have their chauffeur back. Thank the LORD! They are quite the social butterflies. In fact, JinJIn was loading up those two and three other preteen boys tonight to take them to our local high school's football game. Brave soul! Staci was planning a long evening alone, after she goes to McAllister's for a salad! Yes, SALAD! That is what she is craving this pregnancy. Then again, she has only gained like, 13 pounds. With Hunter, it was Junior Mints, and I think the gain was somewhere in the neighborhood of 75 pounds. ANy correlation?! Hmmmmm....

Staci and Don are settling on Madison HOpe (I think!) I can't talk, it took me until the day she came home from the hospital to decide on Ellie Sue's name! But, Don loves that Madison is also his first name, and they both like the HOPE of St. Jude origin in honor of our sweet angel! Speaking of, Staci has actually made a preliminary drawing of his headstone. I think that is a very difficult thing to do. I have heard from others that it is a very, very serious and "final" thing. It includes a favorite line from Shrek that says, "I like that boulder. That's a nice boulder." How fitting, huh? After all, I guess it is only a boulder! Jake would think that was hysterical!

OK, for the upcoming events...
Jake Owen Raborn Foundation golf tournament, to be held on October 5th. Might as well celebrate and do something for good on that day. Jake would want us to preoccupy our minds on something positive. Uncle Todd, Uncle Eddie, and Don are in full gear to get teams to sign up. I will post more information on it soon. If you have a threesome who would be interested in registering a team, just give Todd a holla. tsgroves@comcast.net Let him know you are interested, and he will get you all the info. Hey, any St. Juders in the area, get a team of daddies together, and come on over to West Monroe!!

Then, there is the St. Jude Marathon. I have talked to lots of people who are not planning to join us. Shaaaaaame on you! I am hearing, "I just dont' know if I can train like that again." Well, join me on the sidleines! It is a blast to go put out the signs, and cheer on all the runners! I think there are around 17-18 people signed up right now. Last year, we were in the 150 neighborhood. 85ish went to Memphis. It was quite a show. Staci and Don expect it ot be their first trip back to St. Jude. ALthough they were there last year, they couldn't go down those halls yet. They are hoping to be able to this year. Come on, ya'll, join them in Memphis! contact Karl or Dawn to sign up for the run. I think you can push Team Jake above and get info. Or if you are not getting through, just email Karl at kjkpt@hotmail.com

ALrighty, then. That about does it for an update. I check the counter from time to time and can't believe that there are still thousands of people checking in on a given week. However, only a few names appear in the guestbook. Let Staci and Don know you are there.... just say "hi", or of course, you could comment on my beautiful child! Ha.

Can't wait to have a new baby girl... very, very soon!

and of course, missing Jake, more than you could ever know!

Mo

Sunday, August 26, 2007 11:20 PM CDT

2 things to update you on quickly.

There are 2 links above this journal entry.

The first entry is for Team Jake 2007. Please go there and take a look and click on the Team Jake site in the middle and sign up for the St. Jude Marathon. It is a weekend you will never forget.

The second link is to the video that was shown at Shake 4 Jake. Be careful - it is very emotional.

Keep checking in.

BELIEVE,
Don

Tuesday, August 14, 2007 10:38 PM CDT

Hey all you peeps.

ANd LAY off, Lisa B.! I am a little tied up lately. I took my one big week of maternity leave, and now Miss Ellie and I are off to work every day!

OK, here is the low down. Staci not only has gestational diabetes, but she is also BED BOUND due to toxemia. She has been leaking a pretty significant amount of protein into her urine and her blood pressure is up. There are two major signs. This could be pretty serious, and we are watching her blood pressure closely. I told her she sounds like my dear ol Nannie who went from glucose testing to blood pressure testing to taking meds, etc. One would think she is 70 years old! But, at least she is taking it all very seriously and doing what the doc has told her to do. She actually has to lie down ALL day long. Last week, she thought she could take Hunter to football practice, but when she got home, her blood pressure was up to 148ish/98ish. She now realizes that she can't get up and do anything! That said... she had to go to the doctor today to get her 4D ultrasound! And oh my LORD... I just WISH you could all see this baby! It looks EXACTLY like Don. And I don't mean a little bit. I mean, if you didn't know it was in Staci's uterus, you would think you were looking at a profile picture of Don. It was plain ol' weird! The baby is in the 75th percentile with her size. She is already 4 pounds at 31 weeks. Ellie Sue was 1.5 pounds at this age. This is gonna be a monster sized baby. The doc thinks it is important that Staci make it to week 34 in order to reduce seious risk. However, it will be even safer (and I kinda even think maybe he plans to TAKE it) at 36 weeks. That will mean in only a month. Our little girls will only be 3 months apart. How cool, huh?

Speaking of Ellie, my oh my, that girl is beautiful! I MUST get Jessi to get a few new pics on here. Then, you can see for yourselves! She especially likes to sleep on her daddy's chest. I haven't mentioned it, but we are making weekly trips to Sutton's Childern's Hospital in Shreveport to see a pediatric orthopedist. Her little hip sockets were not fully developed, so she has to wear a harness 24/7. I HATE it, because I can't bathe her, wear some of her super awesomely cute clothes, or best of all, hold her little naked hiney. Don't we all love a little naked baby?! Oh, well, I keep telling myself... it is NOT cancer, so how can I complain?! HEr last appointment was not such a good one, and we have two more weeks to see if we can get more stability in her hips so that they won't click out of socket. If not, we will be looking at a little inpatient stay, traction to her hips, and a full body cast (today's temp felt like 110 degrees with our AWFUL humidity!) from under her arms to her toes. Only one big hole cut in it at her bottom for the fundamentals. I have had patients with this Spica cast, and bathroom issues can become quite disgusting. Let's just hope and pray for stable hips in two weeks! Oh, and one last thing... she is SMILING!! Usually only at her mama! (had to add that!)

OK< and now for JAKE news... we are gearing up for another big year at the St. Jude marathon the first weekend in December. Dawn Sumrall and Karl Kaufman are our fearless leaders. They have asked us to get the party started by directing all interested parties to www.believeteamjake.com if you are interested. Come on, let's have a big ol' Memphis showing. We had the biggest team in St. Jude Marathon history last year for Jake. Let's make it an annual event. Jake would be beaming down on us! Lia? Mindy? Valerie? Kim? Shasta? Bubba Greg? Gary? Word kids? Make it a family event. Bring the whole crew. It is certainly for a good cause. Ok, I am counting on you.... ALL of the Raborn, Massey, Groves, etc. families will be there, with bells on... and with a couple of baby carriages!!

MO

Monday, August 6, 2007 10:03 PM CDT

UPDATE Tuesday 10:45AM

If you read this website between 11:15AM and around 12:00 Central time then give me a call on my cell at 318-376-2132 and help me get out of jail. I'm in jail for one hour to help raise money for the MDA. Just like kids with cancer these kids are amazing. Give me a call and bail me out.

Thanks,
Don


You know how I have said I would post some of the journal that I kept on a daily basis, written directly to Jake.... well, here are a few excerpts, the first set is from 2005, and the second is from the same time in 2006. From time to time, I look back to see what was happening on this day a year prior. This is what I found. Plannig to post a new slideshow tomorrow, and will let you peek at a few of Ellie too. I am sure Jake wouldn't mind.

By the way, I was told that the way to determine a baby's date of conception is to add three months and subtract seven days. Has anyone else ever heard of that formula? Well, she was born on July 12th. Add three months, and you get October 12th. Subtract seven days, and it it the very day that Jake went to Heaven. Don't you think he said, "OK, God, first things first... send my MO THAT ONE!" Bless his little heart. I continue to say I can't wait to join him. He is SO, SO missed!! Mo


Friday, August 5, 2005
Once again, your best play mate and number one aunt stayed until too late at your house. Both of your brothers are staying with friends, so I went down to hang with you. Your mom is considering teaching this year, so she needed someone to keep you today while she got her room ready. You did pretty good for a couple of hours with your bubbas there too! Tonight, we played “Get in the corner.” Today, you were really proud of my putting you in the corner for not taking turns! This carried over to tonight’s “Fun”. You would whine (instead of talk) to your dad, and I would threaten, “Do you want to go stand by that wall?” He would come back, do it again, and peek around him to see if I was listening. It was like you LIKED being “punished.” You played “airplane” a lot tonight, standing on the couch and landing on my belly atop pillows. Then, I would flip you over. You’d ask me to load your luggage on the plane, then you’d take off again. Your mom, dad, and I watched Joel Olsteen on TV. He gave the greatest prayer about Jesus being “more than a conqueror” and that there is no disease that can not be overcome by God. Yes, Yes, Yes, we are believing in your healing, little boy! I am feeling good about your strength and long, long life. I love you, dude. Mo

Saturday, August 6, 2005

Well, we are trying it again. You are lying between me and Hunter, but I’d bet we’ll be calling your mom in just a little while. You and Hunter are having a good ol’ time irritating Daisy, who is acting like an absolute nut this evening. You were whining that Daisy was “laying on me.” But when I said “No, he is just lying beside you”, you were ok with it! We met up today at Sam’s. Can you believe that even a simple shopping trip to town becomes “special” when we get to spend it with you. You rode with me in the Hummer, while Hayden went with mom and dad. When I showed up at your house this evening, you only wanted to play hide and seek or baseball. We also played Buckaroo!! You used the guitar and lantern for our baseball gear. The guitar was the bat! Jin also played a little hide and seek with you. We took turns, because quite honestly, you can wear us out. Then, you took the guitar and said, “I am Tim McGraw.” You even got up on the coffee table, strummin’, and I would sing, “Skydivin, Rocky Mountain climbin’....” until you stopped strummin’. If I sang a second longer, you’d say, “Mo, stop!” When we were playing baseball, I would “hit” the ball and start running around the couch. When I got back to my chair, you would say, “Now flip.” I told your mom and dad that you have really got me wrapped around your little finger when you can not only tell me to hit the ball (with a 2" guitar), run around the “bases”, but also actually TRY to flip when I got back to my chair. You are so precious to me. (We just listened to Daisy snoring together!) You have officially asked to go back home, now. 11:00pm!! Mo

Sunday, August 7, 2005
I thought we were all going to church together, but as it turned out, only me, your mom, Jin, Hunter and Hayden went. We came by and picked you up after church to go with us to Wal Mart. Then, you, Jin, and your bubbas all went on a littel spree at Wal Mart. We drew a little girl’s name to help with school supplies. I wanted your big brothers to learn about helping out people less fortunate, so I had them go with me. Later in the day, you and Hayden rode with me out to the airport to welcome Todd back from his Arizona golfing trip. You were on top of my shoulders and waved over your head back and forth, like you were flagging down a passing motorist. You were really happy to have Todd back. I asked you who your favorite uncle was and you said, “Todd.” Then, I asked you who your favorite aunt was and you said, “Todd.” Very funny!! Mo

Monday, August 8, 2005
Your Aunt Mo isn’t feeling too great tonight, so this may be short. Even though I am feeling pretty crappy, I HAD to stop by and play a little bit this evening. I got you and your brothers out into the front yard for a little baseball. You insisted on using your new bat. In fact, you threw a fit when Hayden also wanted to borrow it. We made up new rules. When you hit it, you had to go get it and return it to me by the time I counted to 20. I made you play by the rules just like them. I think you had a blast with your brothers, and I think you feel so BIG when you are playing “their” games. I look so forward to going to your tee ball games!

I am listening to a new CD about things that can steal your joy. The primary think I have learned so far is that trying to do anything on my own, controlling my environment or situations, will only lead to stress and disappointment. I am really working on giving your future over to Him, so I can just get on to the business of enjoying life and loving you!!

Wednesday, August 9, 2005
We got the news that your AFP is up to 537. Yuck; but there is nothing we can do right now but wait! We heard earlier in the week that your bone marrow is healing and your ANC is 4600, so I guess that is good news! Dr. Triplett says you are right on course for growth of the tumor that you were when you were waiting on surgery after you stopped chemo last December. Since we are just waiting for the PET and CT scans on September 1, he told us just go to Gulf Shores and evjoy ourselves. Oh, did I mention that we decided yesterday to go back to the beach?! Yep... and we are taking your best friend (besides me), Emma Lou. Ya’lll should have a blast together.


Your mom has noticed a little dry cough, so she is suspecting disease to show up in the lungs. I hope she is wrong. Mo

Thursday, August 11, 2005
Another great day! You and your brothers are down here at my house since Todd is in Wisconsin for the week. I sure do like having you all here. On this particular night, your brothers are keyed up, and I have let them go at it. Hayden got the short end of the stick when Hunter got on top of him, and he couldn’t find a way to get up. You kept worrying about Hayden as he sat in the chair with his head down. You would go up to him and say, “Do you need me?” You said this over and over, then laid your head by his and stroked his hair. It was really so sweet. We tried to toilet train tonight (again), but instead had to clean up the carpet - TWICE. You would say, “Hey, Mo...”, but by the time I got there, you were just holding your goober and looking down. We would congratulate you on “trying” and change shirts again. Your brothers are really into skateboarding now, and you try ot mimic all their tricks. You are walking so much better and even trying to run now. I am so proud of you!! Mo







Saturday, August 5, 2006
Oh what a fun day we had! I think your endurance is improving by the day. You are tolerating staying out and in the roads or on the go longer each day. You still breathe pretty hard with not much activity, but “baby steps”, my dear friend! You started the day by going with your brothers to get a haircut. I asked you later in the day if you got your hair cut. It took you a second, but you grinned and shook your head “yea” with a sly little smile! Then, you said Miss Polly washed your hair too! You crazy thang! I called and you made the decision to see the “racecar movie” vs. the “cartoon movie”, so off we went to Talladega Nights with Jin, Hunter and Hayden. I am so proud of you for going without mom or dad... particularly mom! When we got home, the big boys went to the mall with Grant. They are planning to spend the night with him too. So, I arranged for us to go out and see YOUR best friend, Emma Lou. You put your feet in her pool, got to meet her new puppies, and even got in a swing. We sat on the floor for a little while and worked on some art with stickers and a long scroll of paper. You didn’t really want to stay too lo0ng, because it seems like you are starting to get more normal hours, going to bed around 9:00p.m. and up a little earlier than in the past. So, I came on home to let you snooze! I hope to go to church with you in the morning. Everyone will be so excited to see you there. We are all expecting a miracle for you, Jake. I looked up some information regarding a BMT and platelet produciton and it led me to amyelo___-transplant. That is what you had! I just never knew the name of it... it is when the pre BMT chemo is “milder” and does not completely obliterate your immune system. Gosh, I just keep on praying and believing that your bone marrow will get rolling and produce the appropriate cells to allow you to be home and enjoying it, vs. long, daily visits to the hospital an hour and a half away. Mo

Sunday, August 6, 2006

What more can I say but “my cup runneth over”!!! You and your mom and dad and your brothers were all in church this morning. As we sung songs of praise, I literally was just swelling with joy! You peeked around and picked on Miss Cindy a little, sticking out your tongue and such. A big group of people gathered around you and your mom and dad to praise the Lord and ask for your continued healing in prayer. We all went to ElChico’s for lunch... your request, of course. It was really a horrible day for service, and it didn’t take you long before you had had enough. You and dad left early, and the rest of us caught up. Your Uncle Eddie, Tucker and Madison were all over to visit. You pretty much sat on the couch. It made me kinda sad to see your brother, Hayden, play guns and chase with Tucker and Madison, because I knew you would LOVE to be playing that too!

Later in the day, you started screaming! You had a couple of blood blisters on your back htat your mom said she saw come up on Thursday. Since then, they had changed little... until today. Today, they were dark and kinda scabby in the middle, and there were more small bumps all around it that looked really itchy. You were seriously screaming! I hit the internet and had you diagnosed with ITP which is a problem with low platelets. Your mom even thought about taking you to the hospital. Instead, she gave you a big fight dose of Ativan, and you went pretty much straight to sleep. I am glad that you were able to rest. I look forward to your visit tomorrow to LSU and hope it is no big deal. Your mom opted to not have home health come by this weekend, so we don’t really know how your platelets or ANC are doing. I love you, sweet boy. MO

Monday, August 7, 2006
I just find this almost surreal! You went over for your clinic visit today, and if you can even believe this... you have shingles! It seems that the shingles are not all that unusual when you have had chicken pox and then have immunosuppression. I read up a little on the internet, and it is particularly common after bone marrow transplant. It can last a week to months... the worst thing is that it can really be painful. I guess that explains your screams yesterday. Jin said you had another “episode” today. Staci asked for you to get some Ativan, thinking that it would mean pain relief for you, but forgetting that it was really for knocking you out! You slept most of the day. I am glad that at least you weren’t hurting if you were asleep! Your ANC is up , but of course, that is artificially due to the G shot. They haven’t run an AFP in two weeks, because Staci says Dr. Leung says there is no reason to know nor to worry about it. I need to go because I am doing the LAST thing I need to do, which is research herpes zoster neuralgia and pray that you don’t get it... Mo

Wednesday, August 9, 2006
Sweet boy, I am so glad to hear from your mom that as of htis evening, you had still not had an “episode” of pain at all today! I call very often, because your being in pain is something that I just really can’t stand to think about! You have had only one big painful episode per day since you have been there, but today, you didn’t have to experience that. I cannot believe that you are in the hospital! This is supposed to be our time to be having fun with you, and your enjoying your brothers before they have to go back to school (next week)! Staci says your shingles are looking like they are trying to dry up. As long as this continues, and there are no new ones or “wet” ones, you are scheduled to go home on Friday! We all miss you so much and cannot wait to see you! I hope we just sit around on your couch, because I know that is what you would like to be doing. You sure do love your house! And we sure do love to have you there. MO

Saturday, August 12, 2006
Hello sweet angel,

We surely did have a good day hanging out with you. Your mom was amazed at how long you were able to stay up with out a break. But, around 5:30 or so, you said you wanted to lie down, so Hunter, Keelan, and I went to the store with your mom. We actually didnt’ get back until almost 9:30. She had some gift cards to Kroger and Target, and she needed to spend them! At the hospital, we played a new Scooby Doo game, CandyLand, and puzzles. You just LOVE board games! You also had on the Nascar race f or background noise, I suppose. I have NOT caught on to the Nascar craze! You seem to be feeling really good. Last night, you had some really bad looking GVHD coming up on your arms and legs and stomach! I asked the Believers to start praying that it would chill a little, but still be revved up enough to get the bone marrow active for anti-tumor activity! You go back for scans on Tuesday. We should have some results by Thursday or Friday. I am going to BELIEVE that your scans will reveal NO tumors, and that your bloodwork will show an AFP that is cascading toward normal! You have been through so much, and we just have to believe that it has all been a path laid out perfectly for you by God. You have suffered, and I cannot believe that it has been in vain. You have stayed the course... heck, we all have! This whole family has circled the wagons to make sure that you can keep moving toward complete healing! I can’t wait until you come home tomorrow. I love you so much, angel. Mo

Sunday, August 13. 2006
Hello my precious little angel... I was so glad to see your sweet little self back at the house tonight. I got to play a little with you. You and your mom and Hayden all played your new Dora cards. I bought you a card holder (for people with little hands) when I was in Gonzales at Hayden’s tournament. You lit up when you saw me take that one out for you! It was like, “She knows JUST what I need!” You just laid around on the couch most of the day. Every once in a while, I would come pick you up under your legs and around your back, and take you “dancing”. I would bounce you around and you would just giggle and giggle and tell everyone to watch you. I just hate it that you can’t have fun on your own. I hate that you can’t move to where you want to be. I hate that you have resigned yourself to staying put and not necessarily even wanting more, because you know it is out of your reach! It really breaks my heart. I would then help you “walk” back to the couch. You never complained, and we did this about three times. Your mom said your nose has been running. We have never felt that was a good sign. We are not talking about anything negative, though. We just looked at each other like, “ugh”. I am eager to find out about your AFP. I am also eager to see what Dr. Leung thinks about your bone marrow. Your platelets were 70,000 today. That is about the highest they have been in a long time, but it was taken right on the heels of a bag of platelets this am. Anyway, I am hoping that with them holding, your GVHD showing up a little, and no need for red cells in days, that your bone marrow is kicking it up a knotch! I am believing in the LORD for your healing!! I love you so much, Jake. I am so proud of who you are, even at a mere 4 years old!! Mo

Monday, August 14, 2006
hey sweet angel, I enjoyed the day we have had with you at home. I cannot believe that you had a single week home and had ot spend it at the hospital... have I already said that? Anyway, let me quit whining! I tried to get you to walk tonight. I brought you a walker, put on your braces, aka “boots”, and tennis shoes. You were NOT happy with me! I promised you that if you would walk down the hall one time, we would be done! You finished the course! Good job, my little man. You have been throwing up today. Your mom didn’t feel like you felt good last night, and I overheard her talking to Mylissa Horrocks about her taing you straight to the medicine room tomorrow when ya’ll get to Memphis. I know she is genuinely concerned. My only concern is that the vomiting is coming from something related to pressure in the brain. Ok, let me just go on and get positive! Nevermind, Jake... You will be fine! We couldn’t take it if it were any other way. We love and adore you, Jake. Mo

Wednesday, August 16, 2006
Jake, I can’t write much tonight. I am really heartbroken. I have been crying my eyes out, and am just really, really tired and sad. Your mom called, and your AFP is back up to 5200, which is double the number it was a few weeks ago. Jesus, please let Jake live. Let him be ok. MO

Thursday, July 26, 2007 11:46 AM CDT

Quick note for July 30 (MO's update is still below)

I've been gone on a trip all day but couldn't let the day end without wishing my little brother a "Happy Birthday". I would take up a lot of space and time telling you how special he is but if you have kept up with Jake's Journey...you already know what an amazing father Jake has. He is equally amazing as a brother and I wish him all the happiness he can handle.

Jake,
You would be so proud of your Daddy! He misses you soooo very much but he is keeping busy trying to help others that are fighting like you taught us all to do. He is taking care of your mama, Hunter and Hayden and getting ready to meet your little sis. I'm sure you and Nana are teaching her all kinds of fun things while we are waiting. Blow your daddy a big birthday kiss and visit him as he sleeps tonight. We miss you and love you more, little geek!!

Happy Birthday, DON!!!!
We Love You!!!!




All is well in the world...

Just wanted to give you a new little slideshow of our sweetest, most perfect little angel...

I remember when he got those boots. He LOVED them and wanted to wear them all the time. This particular day was a GREAT day at the ballpark when Jake felt good and had been off chemo for the entire summer. This was such a fun time, and in particular, a fun day. Jin and Jake were having a seed spitting contest, and he was just free to roam around between the fields (under a watchful eye, mind you) and be a kid! I love that his hair was sweaty too!

We surely do miss our boy. He is showering his family with blessings, though, and letting us KNOW that he is doing just fine! I, for one, can't wait to join him in Heaven.

Mo

Saturday, July 21, 2007 1:31 PM CDT

Helllooooooooooo...

Well, what do we need to pass on to you? First, Thanks to all the people who came out to the wine tasting this past week. There were around 50 people, so the Foundation will certainly be a "best winner" from your generosity. And by the way, where were you Sandra Dubuc? Ok, I guess we will have to let you know when there is a margarita fundraiser, huh?! Just kidding.

The boys are really having a great summer. Hunter is totally teen! He is on the go at all times. He goes from one kid's house to another's. I think Staci is only contacted when a ride is needed. And he is So COOOL too. You know, entering that phase where the girls are involved in the "group movie" type thing. He wouldn't DARE let me know a particular name or suffer the wrath! I LOVE to hassle him about girls and such. As for Hayden, well, he has included the girls in his activities since he was about 8! He is quite the ladies' man. Seriously, he is also just enjoying being able to go and stay with buddies and have them over. They have found a new mudhole for the four wheelers, so Staci has a new deal about putting on your own load of laundery if you go to the pipeline. So far, not working out so well!

Don is working a lot, but the company went to a new shift work with long days. This means after he has a long stint at work, he gets several days off, so he enjoys his days with the fam! He and Staci spent one of his most recent days off moving baby furniture into their room. They DO NOT have room in their bedroom for this so I gently asked Staci.."Well, did you have to move some of Jake's stuff out?" She said, "NO WAY!, we moved our clothes out!" So, she may only have two or three pair of clean underwear, but Queen Bee will definitely have her empire! As for Don, I think all he needs is a few of his JOR Foundation shirts, and he is all good.

Oh man, I almost forgot, Staci has gestational diabetes. She is at 29 weeks, so she has a ways to go. Any advice on this. Neither of us truly know what this means just yet. The doctor said for one thing, she is probably brewing up a really large baby!

Last, but not least, Little Miss Ellie is doing wonderfully. She is in her papazan chair right now spending a little time on visual stimulation. After all, she is 9 days old, so we need to get busy if we are going to compete in the 2020 Olympics! Even her pediatrician was amazed at her alertness this week. Really, when people see her, they don't think she is as young as she is. She made her first JOR Foundation Board meeting and minded her manners very well! Right now, she is wearing her BLING bling MISS LOUISIANA onesie. Gosh, she is so cute! Both of her hips are susceptible to dislocation so she is now wearing a Pavlik Harness (written so you can look it up if you care about that kind of thing). It keeps her hips up in the socket so they can form better, and if all goes well, she will be all better at 6 weeks. Let's pray! It makes diapering pretty much a nightmare. And, because she wears it 24 hours a day, no such thing as a real bath. But hey.... her AFP is fine, ya know what I mean?! It is hard to shock this family now. You should have heard the orthopedist trying to break it to me at 1 day old. I was like, "no masses? brain ok? then, it is all good... it is just a hip!"

Well, I go to work on Monday (I know, I know I don't want to), so I will get Jessi to make us a new slideshow. I will make sure I take a few pics of Big Mama Staci too so you can see how cute she is pregnant. I will not, however, be posting a picture of me, because SLEEEeeeepless nights are not wearing well on ol' MO! I do have to say thank you, thank you to Uncle Todd who gets all the bottles ready before we go to bed, and is really good at recognizing my limits in the middle of the night and getting up to take his turn. I would have never guessed how good of a daddy he would be. He LOVES his little girl!

Thanks for continuing to care for our family. Only 11 weeks (Hey... there's another 11!) until a new baby girl enters the family. We can't wait.

Love to all...
MO

Tuesday, July 17, 2007 2:06 PM CDT

Quick update on Ellie. She is doing great and Mom & Dad are too.

Below is an event here in Monroe that was put together by Tonore's Wine Cellar and Glazer's Wholesale. It is a wine tasting to benefit the JOR Foundation. Please drop by if you have time.



Thursday

July 19th, 2007

6:00 pm to 8:00 pm

Annual Summer Wine Tasting

Held at

Tonore’s Wine Cellar
801 Louisville
Monroe, LA 71201

$ 5.00 per person for the tasting glass

Proceeds from the sale of the tasting glasses will benefit a locally started national charitable foundation, the Jake Owen Raborn Foundation.

There will be about thirty different wines presented for your approval at Tonore’s Annual Summer Wine Tasting. Dry to sweet, red to pink to white, still to sparkling and even a fortified wine or two will show up at this tasting. Put it on you calendar now.

For more information e-mail me at Patrick@tonoreswine.com or call 318-325-4100.

Sunday, July 15, 2007 1:50AM

Well, I thought I would check in wiht everyone since I just "happen" to be up!

Don moved right on the update. He used Todd's new iphone to send the message to the internet. I tell you technology is really something! Todd was also able to send pics of her to people from his phone, so even his mom and dad were able to see her within minutes all the way down in Orlando! They will be here next week for official viewing.

I hear ALL moms think their babies are beautiful... but this one really IS! I mean, a perfectly shaped head, perfect complexion, and the cutest little nose. We spent three days trying to come to a conclusion on her name. Todd and I just couldn't get together on it. He had some criteria, as did I. I think we have FINALLY done it... are your ready?!

ELLIE SUSANNE GROVES!

Now say, "Ellie Sue" three times out loud and really fast. Now, think about crazy people at the ballpark chanting "El-lie Sue". Yep... LSU, LSU, LSU. Can you believe that? We thought Jake would get a real kick out of that one! He was known to chant that all around the halls of St. Jude. I know he is laughing at that one. We immediately knew that was it when it came to mind. My middle name is Susanne. Mom's is Annette, Staci's is LeaAnne, Todd's mom's is Anne, and his grandma's is Anna. So I was predisposed to thinking "Ann" had to be in the name. But when the birthmom told me her middle name was "Deanne", it was a no brainer! Spending a little time with her made me KNOW she had to have a sweet little name, because she is such a sweet, content little girl. I really expected her name to be Gabbi LouAnne Groves, but just came to think Ellie suited her better.

I will give a little more info on her tomorrow as well as one of the almost 500 pictures I have taken so far. (Does anyone think I am kidding?!) Literally! Jessi brought home her equipment over the weekend to help me wiht this venture. Expect a slideshow tomorrow.

LOVE all the possibilities of the 7/12. When she was in the nursery window, people were already saying, "Jake wanted her to have her own number. It seems to be 12, given that the date and weight both contained that number and her time added to that. We'll see in time.

And to all interested parties, Todd is doing GREAT! He hasn't slept yet tonight! He worries all night long!

Thanks for all your prayers. We DO need them until this adoption is final on Tuesday. Especially pray for the dad who has struggled a little and is making us a bit nervous. Drama at the hospital, and that is all I will say about THAT. Birthmom seems to be committed, and we LOVE her and her family! Thanks for your continued prayers.

Melanie, aka MO, aka MOM!

P.S. Hey D Life SUnday School... Jin Jin will NOT let me take her to church tomorrow. APPARENTLY, 3 days old is not old enough! Maybe we will see you at 10 days old!



Thursday July 12, 2007 6:32 am

Baby Girl Groves has arrived. She was born at 5:16pm. The little princess weighed 7 lbs 12 oz on 7/12. Mo, Todd, & birth mother are doing well.

More details soon.

BELIEVE,
Uncle Don


P.S.
Thanks Jake for another blessing!

Tuesday, July 10, 2007 10:23 PM CDT

Well, let me tell you... I am having some STRANGE emotions lately! Everyone asks me the same thing..."Are you excited about the baby?" No, it is not "excitement", but maybe "anxious" is a better word. I haven't slept well in a week! Todd and I are just a wee bit freaked out about the whole prospect of our own little cutie patootie, whom we are fully responsible for and also who may be keeping us up all night. We are starting the parenting thing a little late in life, and we are both a little set in our ways. We will both be 38 this year. We were figuring, she will be developing into a little teenager and we will be FIFTY! Man, oh, Man!

Ok, so here is the deal... birthmom is being induced tomorrow night . YEP on the 11th!! I would LOVE her to be born on the 11th, but I am really expecting her on the 12th. (Dang, missed it by a day!) SO, we are checking our little selves right into the hospital too and will be patiently waiting. FOr 5 days, the baby is legally not ours. On that 5th day, the birthmom signs the "official" paperwork making her a Groves. So, pray for us that all goes well in the hospital, and that she has no second thoughts and that she feels that the baby is in safe and good place in our arms, trusting us from day 1 to be the ones to hold her, feed her, change her, etc. Also, just pray for her emotional well being. I know this baby was perfectly chosen for us and so far, it has been a PERFECT situation! I will post a picture when all is said and done.

Staci is still waddling along. She doesn't know if it is a girl thing or a 4th baby thing, but she is hurting and downright miserable quite early in her pregnancy. None of us have picked out names yet, but Todd and I had better get on the ball. I proposed, Annie, Jessi, Millie, and Lucy tonight and he nixed em all. He said, "Maybe" to Millie, but that is all. SO, we are still thinking Ellie or Gabbi as our main choices. Charley seems to be suckin hind tit. (SOuthern slang! for not doing so well)

Just a reminder, this time last year, we were organizing TEAMJAKE. We intend to make that pilgrimage again this year and every year. I am interested in how many folks are reading Jake's site who think they may make the trip this year. I got my first confirmation and it was Matty Duboc's mom. Matty is a hepato kid who is now flitting around with Jake and the other angels. She has been training and will meet us in Memphis in December. Todd has been running a ton, and I think he needs to attempt the 1/2 marathon. Who knows? I am still planning on cheering on the sidelines! Mindy?! Let me know, so I can start getting the names together and we can start planning for super cute shirts!

Thanks for continuing to check on us. The Shake 4 Jake raised around $125,000. Can you even believe that?! I am pumped that so many kids will be helped. I know cashola is something that is just always needed when you have a kid with cancer. HOtel rooms, gas money, housenote, or even buying a camera to take pics of your kid in his final months. This is going to really be a cool foundation, and I know Jake is so proud of all those Believers who are supporting this venture.

Oh, and let me say, THANKS to all you who are noticing the 11's. I am the same way. When I am stressed about something, or thinking about a certain way to decide on a problem, or whatever, I find myself FEELING like I need to look at the clock as I am just "sure" that it will be on the 11. And it is just CRAZY how often it is!! (Of course it happened again this SUnday as it does EVERY Sunday when Jkae is trying to get me to go to church.... I DID!)

Alriiiiiiiiighty then (Ace Ventura)... we'll keep you posted on baby news.

Mo

Sunday, July 1, 2007 7:49 PM CDT

UPDATE Thursday July 5th

T-SHIRT UPDATE

Most of the t-shirts were sold at Shake 4 Jake. I've put in another order and when they are ready I will put them on the foundation website. thanks for being patient.

BELIEVE,
Don





What an unbelievable night! It was so downright inspiring. We had no real way of knowing how many people to plan for. We handed out tickets, but not everyone kept up with their sales (guilty!), so the headcount prior to the event was poor. Then, we just had to take a stab at how many people would be coming to the door. SO, we expected around 300, hoped and planned for 500, and the grand total.... between 600 and 700! Yessssssss! So, with the math, that is around $30,000 plus.

There was so much community support. Businesses around Monroe and West Monroe as well as some out of town donated items to our live and silent auctions. Let me take a minute and say THANK YOU, THANK YOU, and THANK YOU for the donations. Our live auction alone raised almost $48,000. We don't have the full total on our silent auction nor on the awesome raffles we had. We raffled a kid's four wheeler, a rack to be used on the back of a vehicle that attaches to the hitch, and a 42" flat screen TV (thanks Wendy and Darrell!). The raffle tickets were only 10 bucks, so some folks walked away with a real deal! By the way, some of our northern visitors told me they had never been to nor seen a live auction with a full-on auctioneer. Much less... one named Buckshot Benson. True south, if I do say so! Thanks Mr. Buckshot for the great job you always do to raise money for good causes.

Everyone I heard from says it was the event of the year. I will try to get pictures posted tomorrow of the set up and event. There was a SEA of GREEN! Some groups made customized tee shirts that were green and honored our sweet little man. Forest Kraft Credit Union had cool Believe tees. The girls from Minnesota had lime green tees taht said, "Minnesota Believers." They are local celebrities as they were interviewed for our local news. We sold tee shirts, and some who didn't come in green, changed when they saw the cute tees. They are black, green, or pink, and I am assuming will be on sale on the website soon?! Not for sure, but I will let you know when I do.

Our group of voluteers was absolutely top notch. I wish I could trust myself to list everyone, but I would never get them all, then I would offend, so let me say a special thank you to Veronicia Woods who organized the whole shindig and saw to it that everything went off without a hitch. She really did an amazing job of tending to every single detail. Jennifer and Clint Perideau, thanks to all your long hours, both in set up and clean up crew today. Jen, we also appreciate your entertainment on the dance floor last night! (NOBODY puts Baby in the corner!) Even our out of town guests, Dawn and Todd Pierce, Trish Hampton, Tina and Jeff Haynes, Denise Yates, and the Minnesota twins (Suzi and Carrie) were ready, willing and able to help out. Thanks to Aunt Starr, Toni, and Uncle Gayle who were also available to help at all times. Jessi, we appreciate your unending devotion to our family and its endeavors to keep Jake's legacy alive. Thanks to Paula, Cindy, Mandy, Kori, Charlie, Bonnie, Eddie, Marina, Angie and Mickey, Tashia, Faith, Polly and Bill, Zach,... and here we go... I am definitely forgetting someone and I apologize!

Staci is actually reaching LIttle Rock right about now. She had to take Trish back home when her flight was cancelled this evening. She had to be at work tomorrow morning, so ROADTRIP! She is turning around and coming home tonight too. Pray for her to be safe. Speaking of Trish, she made the most moving speech about Emma Grace and the downright truth of what it is like to be a family of a kid with cancer. She has an uncanny ability to talk about some seriously heavy material and still have people laughing between their tears. Her speech was truly moving. Thank you, Trish.

Gene Ponti, a local businessman, put together a video of me, Staci, Don and Amy Smith (Allen's mom), which was FABulous! I have not been able to watch a video of Jake since he died. I can look at pictures, although when I look at lots of them, as if I am reliving, thus remembering, that day, I fall apart! A video has not been in my realm of possibility! Gene put little snipets of Jake dancing, jumpin gon the couch, and singing his favorite Tim McGraw song, and I could hardly see I was so moved! It was a perfect, perfect video to explain what it is like to have the heartbreak of finding out that a kid in the family has cancer. Gosh, I miss that little firecracker. He was the light of my life!

We had about 10 St. Jude families make the trip, and they were honored at a special table. They certainly know firsthand how much this foundation will help families just like theres, financially and hopefully, emotionally!

Don wanted me to make a special point to say Sorry to anyone who may have made the trip to the Shake and he did not get to talk to them as much as he would have liked. He said he was busy and, quite frankly, I totally knwo where he is coming from, so although he may have said hello, he wishes he could have spent more time with each one of you. We so, so appreciate your making the trip, and we LOOK FORWARD to your being there again next year. I think the plan is to have the Shake on the next to the last weekend in June 2008. So put it on your calendars!

So, with all that said, Shake 4 Jake as a huge, huge success... even bigger than we could have anticipated. Of course, we have a special little boy watching out for his family. I think he has big plans for us all! Don told me that if we didn't increase our budget at all, last night's earnings will extend the foundation's life for 3 1/2 years. That means LOTS more kids and families that Jake's life and legacy can touch. Thank you, Jesus, for this amazing child. Thank you for his life. Thank you for his reach.

We are so blessed to have our friends and community to support and love our family and our cause. Thank you all so much. Looking forward to a wonderful future!

Mo

Thursday, June 28, 2007 11:50 PM CDT

Never, in a million years, would I have imagined that I would be sitting at the computer in Jake’s living room, updating his journal….but guess what! I AM!!!! For those of you who read the guest book, I am Carrie Kleman from Avon, MN. My friend Suzi Schueller made the trek down to West Monroe today. We have been up and running since 4 am but we are so excited to be here that sleep is just not an option. When we decided to make this trip south, we thought it would be a fun adventure for a very good cause, but we never expected to be so warmly welcomed. When we arrived in Monroe, we were extremely surprised to be greeted by none other than Jin Jin. She gave us the nickel tour of Monroe and West Monroe and then we made a stop at her house. Jin had to head out for the evening so she handed us the keys to her Pathfinder and said make yourself at home! Can you BELIEVE that!?! We had never even met in person and after 2 hours she was entrusting us with the keys to her car! WOW! That is just a sliver of how generous and warm hearted this family is. When we went to check into our hotel, we had a message waiting at the front desk from “Melody Massey” aka MO! So we gave her a call and she invited us over to Staci and Don’s to help with centerpieces for the Shake 4 Jake. Can I tell you what an honor that is? We showered up, and headed over to the Raborn household. We were put to work “sorting” M&M’s and chatting with Staci, MO and their friend Veronica. What a hoot they all are! It feels like we have known them forever.
We also brought a few gifts for the family, one of them being an assortment of things from Minnesota. The other two gifts were for the baby girls…matching pink and white Minnesota Twins outfits and a onsie for each of them. The onsie for Staci and Don’s baby girl says, “My Daddy does my hair” (remember when Don said he had to go learn how to braid hair???) and the one for MO and Todd’s little sweetheart says, “Worth the wait.” Pretty self explanatory, huh! We thought both sayings were fitting for each family. Since we have finished our project we spent some time relaxing and talking. Then MO suggested (pretty much demanded) that one of us update the journal. We were both a little hesitant and then all of the sudden MO said, “Take a look at the clock.” Guess what time it was? YEP… 11:11pm. She insisted that it was a sign from Jake telling us to update the journal, so I couldn’t resist the request from the cutest little blue-eyed angel ever! After all, we are here to honor the little man, right? Well, that pretty much brings us up to now. MO has to work tomorrow and is across the room yawning in a suggestive manner so I better wrap it up for the evening. I wish everyone who is reading this website had the opportunity to be in our place. It is an amazing feeling to be in the presence for such faith and love. Hope to meet MANY of you on Saturday at the Shake!!!
Good evening and God Bless!

Carrie and Suzi

Monday, June 25, 2007 11:18 PM CDT

Days to go!!

I am so lookign forward to all the Believers who are making the trek to Louisiana to meet us and celebrate Jake's life and raise money for kids' with cancer families. We have been blessed with so, so many great items for the silent and live auction. Staci and her friend, Faith, drove to Mississippi to meet with a national rep of a company to get a really great donation, and they said YES! I don't know if I can tell too much about it right now (until Don gives me the go ahead), but trust me when I say it is all going to be very exciting. Now, we just need to sell the tickets so there are lots of people there to buy the cool stuff.

I just know that Jake is looking down and grinning at his crazy family STILL running around like chickens with their heads cut off. Part of me thinks that the chaos of our lives is just the way we live and the way we like it. Then there is another side that feels that planning and creating and doing is a healthy diversion from the reality of the hurt that we all feel from the loss of Jake. As long as we have a project, we are not focusing on his not being with us. Trust me, there is NO forgetting!

OK, for those who have asked, I will try and give some info on Jake's route. First, if you are lucky enough to go to St. Jude, cruise on up to the 2nd floor. Jake LOVED that jukebox. It let you play free music all night long. Jake's favorite songs on the jukebox were on the Barney soundtrack. Go left off the elevator and you will see the "boat" which is the playroom for inpatients. There are other such places, but this was Jake's spot! On the first floor, go to the cafeteria, because on the way there, you will pass the Hall of Fame. Jake's name is near the front of the hall on the left side abotu halfway up the wall. SOrry I can't be more specific. From the front doors, look straight through, and you will see "assessment and triage". That is where EVERY kid has to sign in and get the day's agenda (not to mention their armband that had to be worn at all times). To the right, you go to D Clinic. That is the solid tumor clinic. we have also had lots of our neuroblastoma friends who went there. To the left of the front doors, is the medicine room. Go poke your head in there too. See the kids sitting there, watching cartoons, and getting their chemo! Surreal!!

If you go around the corner and down the street, you can visit the Ronald McDonald House. Jake lived there for almost a solid year the first go round. His precious little hand is on the wall in the back kitchen. It is to the left of the TV lounge area. It is on a side facing wall. It was always emotional to see all those names and tiny little hands and feet from all over the world! Stanton and Emma Grace are there too! Then, there is the Target House, only a few miles down Poplar. It has a fabulous lobby and many celebrities colored elephants, which is the Target House mascot, that can be seen in the lobby area. You will see the pool table that our little hero played on two days after his first brain surgery. Anyone remember that?! Walk to the back yard and see the yard that he, his bubbas, and his mom would wrestle and play baseball on. You will also see many willing and ready trikes for taking. Jake loved going to that playground! He lived on the fourth floor.

Ok, then heading south. Jake and Staci typically gassed up in Hernando (home of Todd and Dawn Pierce). Memphis is 5 hours away from West Monroe, but only one turn the whole way home! Jake really liked to stop at the Senatobia exit for Baskin Robbins ice cream. For the real Jake experience, put chocolate ice cream all over your face and shirt! Get a stuffed animal and let it pretend to be driving (actually holding the steering wheel!) all the way home. Staci would do that with Jake's dear friend, Wiggles the Monkey, and Jake would belly laugh from his little carseat! Ok, then for your next stop, go to Madison, MS, and stop for a bathroom break and maybe a fountain coke. It is a cool city; very clean and unique! Not long after that, be looking for I 20. You are only two hours away! As you are coming into Monroe, you will pass a big sign that says, "welcome to Monroe", but according to Jake you are not homehome until you pass the Applebee's! THEN, my friends, you are home home!

We can't wait to see you.

Mo

Monday, June 25th

Hey Believers;
If you are local, watch KNOE (CBS) this morning and see Don and Staci cooking a Jake special! Stacy Thornton was so nice to ask them to be her guests to promote the Shake even this weekend. Think hard... you KNOW this!!

Melanie

Way to go to Gina Hibbard (or hebert?!)! Shake 4 Jake CHICKALADAS!! There must have been lots of Believers watching, because lots of people calle din with the right answer. Also, they were able to give away a tee shirt to the 11th (of course) caller. Lots of fun starting off a big Jake Celebratory week!!

Mo



Well, nothing much new.

We are working our little fingers to the bone trying to get the Shake 4 Jake event off the ground. Being the first, there is so, so much to do! We have to do the decorations from ground up, there is a lot to do in the way of awareness, and ticket sales need to get rockin. Hopefully as these Shake 4 Jake events become annual, there will be more people not only aware of what the event is, but looking forward to it, asking their bosses to support the event as sponsors, and getting together lots of their friends to make the ticket sales a no brainer. We have had to "guess" on the number of people planning to come as we order the food, set out the tables, and arrange the room in general. Things are coming together, but it is still a little nerve wracking. Can you even believe that our precious little Jake has been gone 8 months, and so much has happened! There was the millionaire occurence, Jin won her car, Staci started growing a bump in front, and new baby girl is coming mine and Todd's way too! Then, there have been so many opportunities that have presneted themselves as a means of fundraising for the Foundation. There are probably 5 events scheduled this year. People who have heard about Jake Owen Raborn FOundation have chosen it as their charity of choice. How cool is that?! We have a run coming up in August. There is a golf tournament planned for October (5th to be exact...yep... Jake's day!) and stay tuned for the Battle of the Badges locally, as well as a big opportunity related to Wal Mart. So much excitement! I know Jake is so proud of his mom and dad. They are taking what they have been blessed with and using it to bless others. And they are so, so committed to this cause. We know that Trish Hampton (mom of Emma Grace), Tina and Jeff Haynes (parents of Stanton), Joan Boyer (Spencer's mom) and Amy Smith (Allen's mom) will be there. Staci and Don could probably tell you lots more, but those I know are coming. Oh...and Dawn and Todd Pierce (Shae's mom, ok, ok, Dawn... Mason's too!). We have had Believer contact us about coming, and some have even recommended nametags, so they can figure out who everyone is. We have some Minnesotans heading down! And, of course, Denise Yates, hailing from Venezuela, is on her way! I hope I am making you WANT to come. If so, you be sure and call my office tomorrow and get Shawn to reserve a ticket for you... and bring a CROWD! 318 396 1969

I will beg Jessi to put a new slideshow on tomorrow. I am going to "bring it" with some of my favorite Jake pics. If you are on the fence about coming to Louisiana for the Shake 4 Jake, look Clooooosely at Jake's sweet face, then decide!! We would love to have you!

Ok, for baby news. Staci is hobbling around like she is due tomorrow! She is really pretty miserable physically. Never fear... she has Melanie Massey Physical Therapy at her disposal. Was that a shameless ad or what?! Still no name for them. You know there front runners... Madison Hope, Madison Hayes, ANderson Reese. Todd finally gave up last night and gave me the ok to name our little girlie girl's fist name. All he wanted was the middle name. I am taking it fairly well.... Augusta! Any golfers out there? Well, if not, that is the site of the Masters Tournament, so... whatever! We are down to Ellie Augusta Groves or Charley AUgusta Groves. We just got past Gabrielle LouAnn Groves (Gabbi Lou). It was growing on me, but Charley and Ellie were my top two names. Any advice? I have my first shower tomorrow. I am so excited. The baby is due July 7th, give or take 10-12 days either way... so that is potentially this weekend. I would LOVE to have her at the Shake 4 Jake! Another good reason to come... to see the prettiest little girl in the whole wide world!

By the way, I forgot to mention, Father's Day was a toughie, as you can only imagine!

And, I will need to tell you all about the special visit we had from a Believer from Minnesota last week. She and her family drove "Jake's route" down from Memphis just to meet his family. Cyndi Eckhart, thanks so much for that honor! She and her family even stopped at the exits Jake used to take on their way home form Memphis to "home home". They stopped at a special ice cream joint and the special gas station where he always stopped for gas and bathrooms for mom. Cyndi, do you mind if I share your email about your trip? Let me know.

Let us know you are still there... we love to know who is reading the site!

Missing, missing, missing our little man!
Mo

Wednesday, June 13, 2007 11:21 PM CDT

Friday afternoon:
Happy Father's Day daddy Don. To the millionaire that has everything, these are treasures no money can buy. Hope you can feel Jake's arms around you, sitting up on your belly, with a hand up your sleeve.

Happy Father's Day, MO

We're back from the beach and jumping right into Shake 4 JAke. It's not too late to send an auction item. If you would like to donate something then send to the address listed below. We're hoping to raise a bunch of money that night so we need all the items we can get. Also, get your tickets now. Don't wait - go right now and get some or give one of us a call. I listed some info above this journal on where to get some tickets. Many more people have them to sell so just ask around. Buy 3 or 4 and bring some friends.

The beach was fun but as most things it just was not complete without my little boy right beside me. He only got to go a couple of times but he loved it. He was really such a great kid and loved just about everything. I miss him more with each day that passes.

Heaven was blessed with another wonderful kid this week with Spencer Boyer. He was 13 and passed away early this week. His website is www.caringbridge.org/visit/spencerboyer. Hunter hung out with Spencer in Memphis. They became pretty good firends up there.

With each kid that passes or each new kid that is diagnosed just drives Staci & I even more. We are determined to make a difference in the world of pediatric cancer.

Not much else going on. Staci went to doctor today and everything looks great. Our bedroom is slowly turning pink with all the clothes that the baby has. I have to admit that I've even done some shopping. I just wish my little man was with me picking out clothes for his baby sister.

Still believing in Jake,
Don

Wednesday, June 6, 2007 6:14 PM CDT

Ok, Ok, enough of the sad stuff... let's get on to remembering Jake in his fun days. Jessi called me and told me she had made a new slideshow of Jake for us to post on the site. However, although she was right on track with where we left off (October of 2004), I thought it would be nice to give a little jump ahead to our very happy days of having Jake with us at hte beach. Everywhere I look down here, I am reminded of him. Yesterday, we saw Hunter pick up a friend's young son and carry him down the boardwalk. It was so reminiscent of the days he adored his little brother and would carry him around on his hip. We opened the closet outside and there were his precious little plastic golf clubs. Then, inside the inside closet, there were wipes, Swimmy diapers, and his sippy cups... ugh... stab in the heart! Staci and I both remembered Emma Lou and Jake taking pictures on the balcony of the condo, and we haven't been able to touch those chairs. It is kinda like his DNA is still on them, so we won't touch them. I know that sounds weird, but until you have walked in those shoes...

I kept trying to add captions to the slideshow of the beach, but it kept messing up, so nevermind. Just watch and enjoy. Jake is so beautiful that his little pictures are self explanatory! Remember this is the trip where Jake got in the pool for the first time since his diagnosis and we wrapped his skinny little behind in Press and Seal Saran Wrap!! Oh, by the way, I also found that in my closet and again...cried and cried. That boy is so missed!

Ok, well, let me tell many of you who have been emailing me that I cannot email you back because my stupid email is only on receive and not send! I will contact you when I get back home! Hopefully, Don will be joining us on Friday. He doesn't want to use his days off until Baby girl is born! He will only be here for a couple of days, but is will be fun to have the whole crew here together. Emma Lou and her family is here too, so it is bittersweet... I know Jake would've LOVED the beach! He was such a hoot!

OK, can't sign off until I make sure you know about our good buddy, Spencer Boyer, who is having a very tough time, "post transplant!". Please visit him at www.caringbridge.org/visit/spencerboyer . He is in ICU and things are not easy for him nor his family right now. We have been there, so it is like we can feel the emotion as we read his site. Please offer your prayers and tell em Jake sent you.

As for the Shake 4 Jake, the tickets are $50.00 each. But to tell you how your money can help, an agency in Memphis called this week and needed financial help to get a kid's family flown in to see her for what may be the end of her life on earth. Jake's foundation is available to meet such needs! The money for your ticket (100 percent of it!) will go toward helping families in such positions. You can go by any branch of Progressive Bank or call Melanie Massey Physical Therapy (318 396 1969) to get your ticket. Oh, and if you call MMPT, ask for Shawn. She will help you. Come on down, we look forward to seeing you.

And Cyndi Eckhart... we look very forward to meeting you... come on down! I will contact you when we get back home. Email me your phone number. We intend to make you a map of Jake's exact trip home, including his favorite stops along the way... for ice cream and such. What a super cool honor for Jake. I cried when I read your email to Staci. Looking forward to meeting you! Melanie, aka MO

Wednesday, June 6, 2007 6:14 PM CDT

Ok, Ok, enough of the sad stuff... let's get on to remembering Jake in his fun days. Jessi called me and told me she had made a new slideshow of Jake for us to post on the site. However, although she was right on track with where we left off (October of 2004), I thought it would be nice to give a little jump ahead to our very happy days of having Jake with us at hte beach. Everywhere I look down here, I am reminded of him. Yesterday, we saw Hunter pick up a friend's young son and carry him down the boardwalk. It was so reminiscent of the days he adored his little brother and would carry him around on his hip. We opened the closet outside and there were his precious little plastic golf clubs. Then, inside the inside closet, there were wipes, Swimmy diapers, and his sippy cups... ugh... stab in the heart! Staci and I both remembered Emma Lou and Jake taking pictures on the balcony of the condo, and we haven't been able to touch those chairs. It is kinda like his DNA is still on them, so we won't touch them. I know that sounds weird, but until you have walked in those shoes...

I kept trying to add captions to the slideshow of the beach, but it kept messing up, so nevermind. Just watch and enjoy. Jake is so beautiful that his little pictures are self explanatory! Remember this is the trip where Jake got in the pool for the first time since his diagnosis and we wrapped his skinny little behind in Press and Seal Saran Wrap!! Oh, by the way, I also found that in my closet and again...cried and cried. That boy is so missed!

Ok, well, let me tell many of you who have been emailing me that I cannot email you back because my stupid email is only on receive and not send! I will contact you when I get back home! Hopefully, Don will be joining us on Friday. He doesn't want to use his days off until Baby girl is born! He will only be here for a couple of days, but is will be fun to have the whole crew here together. Emma Lou and her family is here too, so it is bittersweet... I know Jake would've LOVED the beach! He was such a hoot!

OK, can't sign off until I make sure you know about our good buddy, Spencer Boyer, who is having a very tough time, "post transplant!". Please visit him at www.caringbridge.org/visit/spencerboyer . He is in ICU and things are not easy for him nor his family right now. We have been there, so it is like we can feel the emotion as we read his site. Please offer your prayers and tell em Jake sent you.

As for the Shake 4 Jake, the tickets are $50.00 each. But to tell you how your money can help, an agency in Memphis called this week and needed financial help to get a kid's family flown in to see her for what may be the end of her life on earth. Jake's foundation is available to meet such needs! The money for your ticket (100 percent of it!) will go toward helping families in such positions. You can go by any branch of Progressive Bank or call Melanie Massey Physical Therapy (318 396 1969) to get your ticket. Oh, and if you call MMPT, ask for Shawn. She will help you. Come on down, we look forward to seeing you.

And Cyndi Eckhart... we look very forward to meeting you... come on down! I will contact you when we get back home. Email me your phone number. We intend to make you a map of Jake's exact trip home, including his favorite stops along the way... for ice cream and such. What a super cool honor for Jake. I cried when I read your email to Staci. Looking forward to meeting you! Melanie, aka MO

Friday, June 1, 2007 8:25 PM CDT

Well, another year... Today is D DAY! It is the day that we found out our precious little Jake had cancer. D Day; diagnosis day. Everyone who has a kid with cancer can tell you their day! It is the day their world got turned upside down. I clearly remember being at Staci's on the 30th, both of us closely inspecting what we thought was a potbelly, but we felt was a little too firm. The next day, she found it a little too ironic that he wanted to get up late, eat, then go back to bed. He also felt a little sick to his stomach. That was a first, but in light of our discussion the night before, she thought she'd better take him in. Because that was Memorial Day, no pediatricians were open, so she and Don went to the Emergency room. I will never, ever, ever forget the call that was only, "they have found a mass in his liver." I had Hunter, Hayden and Keelan and we were at the river. Needless to say, we hightailed it into town and met them at the hospital. There was no new information. That night, my fingernails were about to bleed from typing in keywords to diagnose my angel baby. We basically had him diagnosed before they did. When I was on my way to the hospital the next morning, I only hoped they would say, "Well, at least it is not in the lungs" or "It is only Stage 1 (or 2 or 3... just NOT 4!) I had done my research and I knew that either of those two things was NOT good. When I got there, Dr. Bivens, Jake's pediatrician was kneeling beside Staci and DOn and was delivering the news. Before I had a chance to ask all my well researched questions, she was delivering the blows.... "It is in his lungs also. It is Stage IV. It appears to be on both sides of his liver." All the bad things that left Jake with a poor prognosis. By the afternoon, we were on our way, on a private plane, to St. Jude. I will also never forget sweet Jake strapped on that stupid gurney... protocol! Can you imagine his fear? He was a soldier! His mom, dad, Mo, and Pops, all rode with him up there. There was an ambulance at the airport, and Pops and I followed behind into the gates of St. Jude. My heart dropped to my stomach, even two years later, every time I entered the gates. It is truly an awesome place, but NOT one that I would ever hope that any of you are forced to visit. As we walked through the doors, we were slapped smooth in the face with reality. Bald kids everywhere! Some toting oxygen, some with bags of fluid on their backs, and some so discolored from the treatments, that it was difficult to tell what color they started! We were so shell shocked. When Jake was put in a room on the second floor, I specifically remember Staci and I walking down to the vending machines (where many meals would come from for the next two years). I told her, "Just look straight ahead. Don't even glance to the side" as we passed the wall of remembrance with names filling a whole wall of kids who were honored and remembered by families and friends. Can you even imagine?!

Well, that was what it was like to get the diagnosis. The suffering, both physically for Jake, and emotionally for his mom and dad, only intensified as his treatment progressed. However, our family was so united in his fight. I learned that I could drop EVERYTHING in my life, when it means taking care of someone in my family. I would always have thought I would be able to do that, but could I really? Could you?! Then, there was DOn and Staci, both realizing that there is no amount of money in the world that can buy precious time with their child. Staci immediately left her kindergarten position, a job she adored. And, as you kept up with Jake's journey, you will remember the MANY times Don faced the possibility of losing his job after being off too many days, then NOT being able to emotionally pull himself away from Jake's bedside. Even the boys.... they would be given a choice of staying in town to go to one of their buddies' birthday parties or driving what would become a 10 hour trip over a weekend to spend a day and a half with their brother. Do you know I don't think they EVER chose to miss an opportunity to be with him?! What would you do? Have you ever considered your priorities? Jake certainly helped us realign ours!

Well, I just felt it important to remember that day. Today is three years exactly. This is the day we entered the gates of St. Jude. Jake is surely with us today and always. Not even death can take him away from our hearts!

MO

Monday, May 28, 2007 10:52 PM CDT

Hidey Ho...
Greetings from Mo in Gulf Shores, Alabama. Staci and the boys are supposed to come down in a few days, but it all depends on the boys' ballgames and their winning or losing. It determines how many more games they have to play; therefore, how long until they will be able to come down. If you recall, every year about this time, Todd and I have taken the boys to the beach (usually through tears as I am leaving Jake in bad shape at the hospital). If you further recall, Memorial Day weekend is the family's BAD memory weekend! Jake was diagnosed on June 1st of 2004. On this same weekend in 2005, he was in septic shock at LSU in Shreveport and they really couldn't tell us if he would make it or not. Then, Memorial Day 2006, and Jake was on the ventilator at St. Jude. I looked back to see what was happening on this very day last year, and saw that Jake was being flipped from belly to back (thus, the new nickname, "Flipper".) He had drain tubes from his belly and chest, and was just beginning to make urine. I just don't remember how CRITICAL he was at that time until I read back. I was reading my journal entry (the one to Jake) and recalled how we would lift his little head up from the gel pillow they used to keep his head on something soft, and he would be sweaty and his little ear would be all smushed. I will stop now, because I am not trying to recall bad news, Just realizing that Jake is in much better shape now. He, we believe, is happy and whole...

Ok, and now for more upbeat info. Jin and I were at the outlet mall today, and I have a lady come up to me and say, "Are you Mo?" Shocked, I said, "yes, and who are you?" She said, "I am a Believer from Memphis. I keep up with Jake and lots of others on caring bridge." Her name is Scotti and she lives in Memphis. She actually recognized me from the website. I introduced her to JinJin, and told her that we are hoping ot see the rest of the fam down here later this week. Also, let me be the first to say, "Hey, Ann." Ann also reads the site, and is Scotti's mom, who Scotti said would "be so jealous." How funny! Oh, and Scotti, tell your mom I would love to meet her... just come on down to the Shake 4 Jake on June 30th. And lots and lots more of you. Mark your calendars. I think we are going to have a BLAST! And all to remember our sweet boy. I tell you this is the start of something BIG! Get on board! We will list the sponsors soon so you can know who all has contributed. We are so very appreciative.

Love you all... thanks so much for continuing to check in. Still no girl names for sure. Leaning now toward Gabby LouAnn (GabbyLou) or Charley. Todd came up with the Gabby by himself. He also likes Toby and Tate.

I think Staci and Don are liking Anderson Reese and Hayes. Also, Madison Hope. Don's first name is Madison and HOPE is St. Jude's slogan.

Well they may not have names, but they have LOTS and LOTS and LOTS of clothes!

I sure do miss my Jake!!

MO

Friday, May 25, 2007 1:46 PM CDT

Good Afternoon Believers!

THANK YOU for your Prayers for our little one, Tucker. Thank you for your guestbook entries, thank you to our SS class, and to North Monroe Baptist Church for their support. We appreciate our family so much by dropping everything and helping us. Also, we want to thank Baby Jake as we know he was watching out for Tucker and that we used Jake’s website for the week to ask for Prayer.

Tucker is out of the hospital and we are home from Little Rock. As of right now, Tucker’s kidneys are functioning and our doctor here will monitor his recovery. He is drinking well but still only eating cereals, toast, & grapes. Today, we visited our primary doctor, Dr. Dyess, and she said it may take several weeks for him to eat like he was before he contracted this very wicked, wicked virus. Also, she said it will take several months for his nightmares to subside.

Tucker had 106 degree fever and became severely dehydrated in a very short time but the Arkansas Children’s Angel Flight Transport Team, PICU, & the rest of the ACH medical staff did just an OUTSTANDING job treating our little one and saved his life.

Believe,
Eddie & Marina

P.S. Watch for Tucker & our family as we will be out in force soliciting donations & sponsors for “Shake 4 Jake” (June 30th, 2007).

Tuesday, May 22, 2007 1:30 PM CDT

Update on Tucker: 10:46 am Wed.

Kidney function is back to normal. Chemistry levels are all back in normal range. Still dealing with some lingering side effects but can be handled with medication and time. They should return to Monroe late tomorrow. Eddie and Marina wanted to let you know that your prayers, calls, and visits have been invaluable. As usual, you have provided great support during a terrible time.

Aunt Bonnie

Dropping in to let you know Tucker is doing better each day. I hav not heard of any plans for discharge but will keep you posted.

Staci is doing great. She seems to be getting some energy back and starting to adjust. She is busy with the boys and the Foundation. We're starting to work on baby girl names but nothing has really hit us.

Shake 4 Jake is coming along. Please make every effort to attend. It is reall going to be a fun night with a great purpose. Please come out and support the cause.

Hunter & Hayden are out of school. They both did really good in school considering what when on this past year. They really are 2 pretty cool kids. They were beside Jake every step of the way. I know they will watch over baby sister too.

Lots going on - but not much else to say. I always want to write something about Jake but I try and somedays it's just too tough.

Keep checking in.

BELIEVE,
Don

Saturday, May 19, 2007

Monday 7:21pm
Tucker won. He is in a private room eating a popsicle. All kidney function has returned to normal levels. Eddie is doing better but Madison still not feeling well.

Monday 12:40 pm
Well, the race is on. Let's see if Tucker, Eddie or Madison will be the first to hold down some chicken soup. Tucker is holding down his liquids and will be trying some chicken soup in just a few minutes. If that stays down a little while, he will move to a regular room to continue treatment. His potassium is still a little low but continually moving up. Eddie and Madison are doing a little bit better but not up to par. They are not going in the room with Tucker until they are well. Eddie is out in the waiting room but will wait til tonight to go in and see his buddy. Aunt Phyllis is trading off with Marina to keep Tucker content.

Keep the prayers going. We are soooo grateful for all you have done so far. We give God all the praise for keeping Tucker with us and getting better.

Always believing,
Aunt Bonnie


Sunday night--11:00pm
Chris and I just arrived home from Little Rock. Last report from Eddie was that Tucker was gaining ground and getting better. He and Madison, on the other hand, were at the hotel following in Tucker's footsteps or as Maggie so eloquently stated to someone today "They've got the throw-ups". Eddie said he was doing a litte better but Madison was not feeling so hot. Marina's sister, Phyllis is at the hospital to help with Tucker-Man. If all continues to go well with him, he should get to go to a regular room on the floor by morning.
I will update more tomorrow but PLEASE make sure that you scroll all the way down if you have not read the site in a week or so and make sure you check out the Jake Owen Raborn Foundation at www.jakesfoundation.org
You are reading about two of my nephews....just think if I wrote about how awesome all 7 of them are...

Aunt Bonnie
Sunday around 2:30
Scratch the holding fluids down...Tucker is back to vomiting again. Kidney function continues to improve little by little but still a way to go. Please pray specifically for nausea and vomiting to vamoose and all chemistry to get in line like it should be. Pray for rest for Tucker, Eddie and Marina. Pray for a full and speedy recovery. This boy has things to do.

Aunt Bonnie

Sunday around 11:00am
Tucker is holding down some Sprite and FINALLY getting some sleep. The doctors came in and said they were VERY PLEASED with his progress. Yeah, Tucker!!! I didn't get to hear everything but I'm sure Eddie will give a full report later.

Make sure you scroll all the way down and read about the Jake Owen Raborn Foundation. I have on my shirt today (and yesterday) and I have been able to share his story many times. Check out the foundation website www.jakesfoundation.org

BRE

Sunday Morning, 8:30 am
Kidneys are functioning a little better but not up to par yet. They let Tucker have something to drink this morning but it didn't stay down long at all so back to nothing by mouth. I will update more after the doctor comes by this morning.

Aunt Bonnie

Sunday Morning, 2:45 am
I just came out of the PICU where Tucker is watching Shrek 2. He is doing better by the hour. His renal function(kidneys) has improved since we've been here and the doctor seems to think it will only continue to do so. We still do not have any answers as to the origin or cause of this illness.

Marina, Aunt Phyllis, Jordan and Madison arrived about 30 minutes ago. Marina stayed in Monroe with Tucker until the Angel Flight came from Arkansas Children's Hospital in Little Rock to pick him up. Around 7:30pm, when it was confirmed he was going to ACH in Little Rock, Eddie and I left to make sure that that Tucker was alone as little as possible. We were here when the Angel Flight chopper arrived and Tucker was in a good mood. Eddie and Marina are EXHAUSTED. Please pray for their physical strength and endurance. Pray for Tucker to stay content as he deals with all of the yucky stuff. We appreciate all the calls and prayers tonight. I hope you never go through anything like this but if you do, I hope and pray we can return the kindness and love shown to us.

Tired but always BELIEVING,
Aunt Bonnie


Urgent prayer needs:

as unbelieveable as this may seem, this family is facing another pretty serious situation. Any of you who have been Believers for any time know that Tucker and Maggie were two of Jake's cousins who were often pictured with him on the site. Tucker has the bright red hair. He is the son of Uncle Eddie and Aunt Marina. Yesterday, he was put in the hospital with 106 fever. I am not sure why yet, but I THINK there was a bacterial infection. I just got word a little while ago, that he is being transferred to PICU this evening, as his kidneys are not working. SO... as is the custom, please stop what you are doing right now, bow your heads, and say a little prayer that Tucker's kidneys kick it into high gear, his infection is cleared, and he is back at home in a day or two! That is my prayer!

Also, HAPPY BIRTHDAY STACI... she is the big 3-4 today! I also wanted to show you that when I was going to put a new date above, I usually erase the present date. However, I noticed that the foundation website and the big press release were both on 5-15. Yep... you do the math! And another thing, when DOn got back the articles of incorporation or whatever it is called saying the foundation was legite, that was also a date that added up to 11. I don't remember the exact date, but I will get back to you on it. OUr little Jake is still with us in so many ways... and he is with his cousin, Tucker, today too!! Mo


Tuesday, May 15, 2007 7:53 PM CDT

Staci & I are so pleased to announce the opening of the website. It brings our foundation up to full strength and we are completely up and running. The website itself is about 90 percent complete with a few missing links and we need to add merchandise to the store which is coming soon but for now it is mine, Staci's & our Board of Director's honor to bring you www.jakesfoundation.org

Please spread the website from coast to coast and beyond. Just like Jake, we can & will make a difference.


BELIEVE,
Don - Jake's Proud Daddy

Monday, May 14, 2007 9:40 PM CDT

Now that all the baby news is out of the way, I am back to let you know abotu some other exciteing things happening down here in good ol' West Monroe. You know the TLC channel on TV? Well, they are here filming a documentary called (I think) "Jackpot", highlighting people who have hit big jackpots. I think it was intially meant to be all about how the money changed their lives... they were probably expecting big ol' houses, new cars, and things of the such. I know I have watched shows like that, glued to the TV, because it was so interesting. Well, I don't think they have had a story quite like the Raborns! As you can imagine, it all turned to JAKE! When they learned that the Raborns are still in their same house, and that the largest designation they have made is to the Jake Owen Raborn Foundation, the focus of the interview changed radically. They are coming to film the boys tomorrow night at the ballpark, and will be in town tomorrow for the big press release for the Shake 4 Jake. I was thinking tonight how proud Jake must be of his mom and dad. Think about it... he has not been gone from this earth 8 months, and so much has been done to bring attention to pediatric cancer and to remember and honor sweet Jake! Dont' even think we have forgotten about TEAMJAKE that will be back in Memphis in December. I will start challenging ya'll to start your training in July. (I've been told that is the time it takes to train for a 1/2 or a full marathon! How would I know?!) Anyway, I just think Jake is grinning in Heaven seeing all that is going on down here with his family. I will let you know when the TLC thing is airing as soon as I know myself!

Don says don't hold him to it, but the Foundation's website may be up and running tomorrow. We will be sure to get on here and make it public so that everyone can go and check it out.

Now one more thing... the other night (Saturday, actually), Hunter and Hayden's team was in a barn burner which went to 8 innings. We were playing the first place team, and I believe we were their only loss earlier in the season. By the way, BELIEVE, The Jake Owen Raborn FOundation is the sponsor of this team. Anyway, both Hunter and Hayden had BIG hits! Hunter pitched great! One of Hunter's best buds, Tyler, (also buddy to Jake!), has not had the best season at the plate! He has kinda been in a strike out slump, in fact. Well, I walk over to the concession stand and I hear screaming and clapping, and as I walk back, I see Tyler circling the bases to tie up the game in the bottom of the 7th. As the game ends, one of the fans, who was also obviously a JOR fan, said, "Hey, check out that scoreboard. 6-5! That is another 11!" Now do I think that was a fluke? NOPE! Thanks, Jake, for being with us during the most exciting game of the year. Your brothers would make you so proud. They are looking forward to a sister.

We should have some fun news to report tomorrow after the press release. How exciting, huh? Jake, we love and miss you so much! And thank you for MY "prize" who is due the first week of July! Sweeeeeeeeet... TOtally!

Mo

Thursday, May 10, 2007 6:42 PM CDT

Baby #4 is a GIRL! The ultrasound went great. The baby and Staci are both doing good.

You would think after all that we've been through that I could handle my emotions better but the tears were flowing again today. Some were happy tears about my beautiful daughter that will be here soon and then there were some sad tears wishing my little hero was still here.

Lots more to talk about but for now I have to go learn how to braid hair.

BELIEVE,
Don


Jake,

Thanks for looking out for us. You did suprise us a little by sending us a girl but you know what we need. I miss you more than ever and think about you every minute of every day. Please keep an eye on your brothers and now you little sister.

Always believing in you,
Daddy

Wednesday, May 9, 2007 9:34 PM CDT

Hello, again...

I have come down from my cloud, so I can type in again! We are drowning in a sea of PINK! We have been given so much stuff... and to any of you who read this site that has donated to the cause... thanks!

Staci and Don will know the sex of their little one tomorrow. You all KNOW how weird I am about my 11's. I KNOW they are from Jake! Tonight, we had a planning meeting for the Shake 4 Jake. I drove up in Staci's driveway at 6:11pm. I thought, hmmmm... that is weird! Then, when we were all done and I got back into my car, it was 8:11pm! I said to myself, "Ok, Jake, I know you are telling me you are with me." Then, I went to Hunter and Hayden's ballgame. I was late because of the meeting. WHen it was over, I climbed back into my car, and guess what... 9:11pm! Ok, so by now, I am thinking he is trying to tell me something else! Maybe that he is goign to be all over Staci's appointment tomorrow morning. Whatever it turns out to be is EXACTLY what God and Jake have decided will be the best for the family.

Speaking of the Shake 4 Jake, we are still getting lots of goodies for the Silent Auction. We are really expecting a great night. If you think there is any way you can be here, make plans... put it on your calendar for June 30th. It will be informal, with everyone asked to wear green. THere is an awesome band scheduled from somewhere out of state (not sure!), so wear your jeans and DANCIN' shoes! I hope I have a baby by then, but have recently been told that the baby may not be here until the first week of July. Anyhooooo...

Want to participate in a little baby naming? Try these on for size...
Ellie Groves
Charley Groves
Massey Groves
Georgia Groves
those are probably my top picks...
then, I like Heidi, Sydney, Libby, Lizzie, Lilly, Toby, and then there is Todd's pick: Augusta BIRDIE! (Is he a golf fanatic or what?!)

We will try and talk Staci and Don into letting us help name theirs too... once we know what it is !

Missing that Jake! We got more of the JOR Foundation marketing info. in, and I have to tell you that the pamphlets are AWESOME! They just make you love him even if you didn't know anything about him. Don had the graphic designer incorporate 4 little slashes on every piece of information. That is how Jake signed his name. He would say, "J-A-K- E" as he made four little vertical lines. HE signed every one of his consent forms for surgery, chemo, radiation, whatever. Staci or DOn would sign, then Jake would say, "Now me." He also signed every credit card transaction when they were out to eat. Now, his autograph has become part of the logo! He was so super duper special. Miss him so much.

Mo

Thursday night:

Ok, the verdict is in....

Hint: Rhymes with "whirl" and "pearl". You figure it out! Now, just waiting for Staci and DOn's news. Thank you Jake. Thank you, thank you... I know you were helping God find this perfect baby for us. We have the 4D Ultrasound, and she is BEAUTIFUL!

Jessi and I have already discussed a new slideshow tomorrow. Check in, because we left off in October of 2004 with Jake's pics, and the pumpkin patch that year were some of my all time faves!

Blessed!
Mo

Newsflash: Tomorrow, Todd and I will find out if Staci and DOn will be having a niece or a nephew! Yep... adoption is underway. and to any of you wanting to see sweet baby Groves, plan to be at the Shake 4 Jake. We should have a one week old by that time!

Staci, Veronicia, Polly, and I worked on some super awesome, great, so cool earrings tonight. We are putting a lot of hand-made jewelry in the silent auction. Make a date to be here... even you Minnesotans!

aWWW. Shrek the Third was just advertised. Jake LOVED that Shrek. Really, preferred Donkey! Today I was at work and I saw the Dragon I bought him at the Shrek ride at Universal. It made me kinda sad. We are also moving our offices, and I had to move pics of Emma Grace, Stanton, and obviously lots of sweet Jake. I also found the casts I made of his little feet and legs when he was really sick and we were casting to make him a pair of braces to help support his ankles and possibly help him walk. We never sent those off, because Jake was back off to St. Jude for lung surgery again. Those little casts look just like his little legs and feet. They are precious... I like having them to remember.

Mo


Okay... I am singing the blues... my brother in law is MAD at me! I was supposed to come back and make SURE that I clarified that the tee shirts are not available for another few weeks. I told him I was just drumming up some interest! ANd boy did I ever! Thanks for all the interest. We will have them for sale at the Shake 4 Jake! I sure hope you can make it. After the cross and pendant fiasco, we are NOT looking to start another shipping project! Staci is painting the last batch of crosses and pendants right now, and we are hoping to get those done by the end of the week. I certainly hope we will have filled every order. If you think we missed you, or something was wrong (someone told me this week that their's were broken), then email me, and I will try to ge it resolved. mgroves11@comcast.net We had a planning meeting tonight, and I think this is going to be just so, so cool! Staci and Don have really made it a first class event. All of the marketing paraphanelia is so nice. I mean really professional! We are awaiting the opening of the Jake Owen Raborn Foundation website soon. It, too, will ROCK!

I absolutely LOVE my DVR! I am sitting here now playing back today's Oprah. OMG (that's for you, Dawn)... I couldnt' believe the story about the family who lost their son to cancer... his name was JAKE!, and they were struggling with how to get rid of all the "clutter" that were their memories of him. I cried and cried, just knowing that someone else had to go through what we did! And... I know that Staci and Don obviously have the same issue. THey have a pretty cool plan, though, to have an area in their new house set up just to honor Jake's memory. THey also bought a safe to preserve some really special, invaluable, irreplaceable things!!

Well, I can't give out too much info at this point, but Todd and I have had quite the whirlwind week. We should be finding out the sex of our baby this week! Of course, as with any private adoption, there is some guarded optimism, but we have met the mom and her family, and it is looking pretty solid! The baby is due June 24. Of course, we expect it on 6/23. By now, do I still have to add that up for you? 6 2 3=11!! Oh, speaking of 11, Jin called me today and thought I would be interested that the license plate came in today for her new little convertible! The numbers on the plate were 038. You do the math! Thanks, Jake!!

That is one special kid!
Mo

Friday, April 27, 2007 8:47 PM CDT

SORRY! The t-shirts are not for sale yet. We hope to have the ones for sale ready by the middle of May.

Keep checking.

BELIEVE,
Don


Hey everybody.
First, let me say I so appreciate those of you who are still checking in on the fam every day. I know some of you sign the guestbook, and many people tell me that you are reading everyday, but just not signing. Thanks so much! There is some new information, but you will have to watch the WHOLE slideshow to find the clue. Staci is doing just fine. She is aggravated about her lack of ability to find maternity clothes (let me rephrase that... CUTE maternity clothes!). The countdown is on to find out if I will have a new nephew or a new niece! May 10th!! I am still hanging out in the 15-16 pound range, so I am also looking forward to the 10th so I can appreciate my band being tightened! Thanks to all of you who have emailed me and offered their support and advice. Hunter and Hayden are on the same team, so it ROCKS to be able to go to only a couple of games a week! Hunter is really doing great as a pitcher, and Hunter AND Hayden had doubles last night. ROck on, boys! They, of course, are looking forward to being out of school. Hunter will be turning 13 in a couple of weeks. Unbelievable!

We miss our little Jake more than is able to be described with words! He was just such a light in our lives!

OK, our slideshow tonight is of our booth at the recent Relay for Life. Hunter and Hayden pretty much spent the whole night shooting marshmallows at each other (and us!). Staci's good friends, Polly and Veronicia, are being really good leaders and facilitators in the groundwork for the Jake Owen Raborn Foundation. Our colors, as you will see, are going to be lime green, black and white. You will see that all of the family was there... the Raborn clan, the Groves two, and Jin! It was quite emotional when Staci and Don received the plaque stating that the Relay was in remembrance of Jake. There are pics of PawPaw Raborn, walking his lap as a cancer survivor. Then, you will see lots of cousins and friends. Oh, and by the way, I WAS REALLY just kidding, Bonnie and Eddie! Thanks for helping on the site lately. I hope to do better. Jessi is helping me with the slideshows!!

Loving and missing Jake...

Melanie, oops, I mean Mo!

Thursday, April 26, 2007 11:11 AM CDT

Believers,

Good Morning,

Thank you for your Prayers for our Family, again. Aunt Marina & Phyllis truly appreciate your Prayers & kind remarks in the Baby Jake’s guestbook. Please keep the family in your Prayers as we struggle with the loss of our brother, son, uncle, and friend, Bryan Tucker.

Staci is doing well and will have ultrasound in early May. Our Family cannot wait for the new addition to our Family.

Jake Owen Raborn Foundation News:

SHAKE 4 JAKE is set for June 30th, 2007 at the West Monroe Convention Center.

We plan everything we do to honor our Baby Jake. We hope that this inaugural event will be just the first of many, many more to come. We are asking for everyone’s help to make the 1st SHAKE 4 JAKE a memorable event for everyone.

First, we want everyone who can attend to please reserve June 30th on your calendar. We will have tickets (special wristbands) for sell 1st week of May. We want to fill the Convention Center with BELIEVERS!!!

Second, at the SHAKE 4 JAKE we plan to have raffles, silent auctions, and live auctions to raise money for Jake’s Foundation. If you can donate anything….gift cards, any item big or small, give away items for attendees please email me at mraborn@jam.rr.com or Don’s email below. If you have any items to donate please send to address below or to me at 104 Raymond Drive, Monroe, LA, 71203.

Third, we need SPONSORS for this event….we plan to make this event a memorable one for everyone so that we The JAKE OWEN FOUNDATION will be able to help as many families as possible. We want to assist as many families as possible the way our family was supported during Baby Jake’s long battle with The Beast. There are different levels of Sponsors please email me or Don for more information regarding sponsorship. Please consider being in on this inaugural SHAKE 4 JAKE.

Baby Jake’s Uncle Eddie

Sunday, April 22, 2007 0:33 AM CDT

Good Morning Believers,
This is Uncle Eddie. Aunt Marina's brother, Bryan Tucker, 46, died suddenly Friday morning of an apparent heart attack/seizure. Our family is devastated by the loss of this wonderful, wonderful man. Uncle Bryan helped with many fundraisers for Baby Jake or watched our three little ones so that we could do more for Jake. He was a humble man with a sweet, sweet spirit. Please read the following obituary. Please Pray for the family again as we struggle with the loss of such an important part of our lives. Marina, Phyllis, sister, and Bryan supported each other in all things and in every way. They are completely heartbroken.

Joel Bryan Tucker, Jr.
Mulhearn Funeral Home
Sterlington Road, Monroe, LA

Some people come into our lives and go quickly,
Some stay awhile and leave footprints on our hearts
and we are never the same…

Life celebration services for Joel “Bryan” Tucker, Jr., 46, will be held at 10:00 a.m., Monday, April 23, 2007, in the chapel of Mulhearn Funeral Home, Sterlington Road, Monroe, LA, with Dr. Bill Dye officiating. Interment will follow at Mulhearn Memorial Park Cemetery.

Bryan was born in Monroe, LA on September 19, 1960, and earned his much deserved wings on April 20, 2007. Bryan loved the Lord and his Christian values were evident by the way he always made time to help others in need. He set the bar high with his determination and work ethic. No task was too small or too large for him to not give his full attention to every meticulous detail. Bryan was appreciated for his irreverent sense of humor and his ability to make others laugh. Bryan was a loving son, brother and fiancée’. He loved his family, his fiancée’ Donna Underwood, and cherished her two daughters, Brandie and C.J. He was overjoyed about the upcoming addition to their family, Allison Joelyn Tucker.

He was preceded in death by his father, Joel Bryan Tucker, Sr.

He is survived by his mother, Carmelyn Slavent Tucker, and sister, Phyllis Tucker Mayo, her husband Reggie Mayo; sister, Marina Tucker Raborn, her husband Eddie Raborn. He is also survived by nephews Joshua Tucker Leonard, Madison Bryan Raborn, and Tucker Edmond Raborn, and niece, Jordan Nicole Raborn.

Pallbearers will be Joel Keith Tucker, Mark Lindstrom, Ray Cartwright, Woody Manning, Mike Reeves, and Allen Cannon.

Visitation will be held on Sunday, April 22, 2007 at Mulhearn Funeral Home from 5:00 p.m. to 7:00 p.m.

In lieu of flowers, the family has requested donations be made with Progressive Bank (account #1683640) for the Educational Fund for Allison Joelyn Tucker.

Tuesday, April 17, 2007 9:46 PM CDT

Saturday Night 10:52PM JUST A NOTE TO REQUEST PRAYERS FOR UNCLE EDDIE AND AUNT MARINA'S FAMILY. Friday morning, Aunt Marina's brother, Bryan, passed away unexpectedly from a heart attack at age 46. He was an amazing son, brother, uncle, friend, fiancee and soon to be father. Bryan and his fiancee are expecting a first child that I'm sure he will watch over daily. He was very special to my mom and is surely busy in Heaven talking with her and his dad while watching our Jake. Please pray for peace and comfort for our family.

Aunt Bonnie

Aunt Bonnie & Aunt Mo decided to update at the same time. Both updates are posted here on the front page. Thanks for always checking in on us. Staci & I promise an update soon. For now, the words are just not there.

Missing our little hero.

BELIEVE,
Don & Staci




OK, I am back!!

I have not had access to a computer in the evenings, which is my usual time to update. A Believer, Lia Fryday, found the cutest little puppy back around Christmas. She brought it to my office with a big red bow around its neck and a note written by her two young girls saying, "Miss Melanie, Please take me home and feed me. I need a good home...." You get the picture! SOoooooo, little puppy came home with me! He tried a little stint down at Staci and Don's, but the promise to take care of him (Hunter!) fell by the wayside, and Memphis is now living at Mo and Todd's! He is so, so cute, but "cute" didn't keep him from chewing my charger cord in two! SO, I have not been able to charge my laptop! That's my story and I'm stickin' to it!

I thought Aunt Bonnie was going to update you all about the Relay for Life. I am calling you OUT, Bonnie! Anyway, Jake Owen Raborn Pediatric Cancer Foundation was there and represented by Staci and Don, Jin, the Raborn bunch and lots of friends. There was a LOT of interest, and hopefully, people are going to be at the Shake 4 Jake on June 30th. Veronicia just got a GREAT band secured, so if you can, mark your calendars! It is going to be FUN! Thanks to some of you who have sent items for the silent auction. We really, really appreciate it! Everything that is sent will bring money that can be added to the large commitment Staci and Don have already made to fund the project. That just means more families to help! I will tell you that being in that Civic Center, with all the survivors, and "happiness" and celebration... that was HARD! I was so honored that they chose to remember Jake, but truly, just HARD! I could feel it brewing up in me, and I warned Staci, as we don't let each other see each other crying, as it quickly becomes contagious! Then, Jin's tears came! There were several of our St. Jude friends there.... SURVIVORS! Thanks to anyone reading this who participated. ANytime attention is brought to funding to irradicate cancer, we will be there! We hope someday no one will ever have to suffer a loss like ours.

It just tends to get more bittersweet. I passed a little tee ball team practicing today, and I KNEW it would have been Jake's age group. I got so sad! Do those parents, who probably griped about having to be there, know how LUCKY they are to be watching such a significant event in their young children's lives?! I sure wish Jake could have played. He would have LOVED it! and... he would've been AWESOME!! Then, I decided to clean up my artroom last night. Because I have made many, many, many gifts and projects using Jake's wallet sized pics, I have tons of them stored up on my art table. I decided I needed to clean off the surface of the table. As I sifted through the pictures, I snorted and cried and let it all hang out! It breaks my heart sometime to look at the pictures. Oh, let's just admit it... everytime!

As for all the big news in the family... Staci will learn the sex of Baby #4 on May 10th. That will be the same day I get my band tightened for the first time. I have lost somewhere in the 15 pound range. Monday was three weeks! I was doing great, but I am honestly getting hungrier, and NOT liking that feeling at all! Too much money and suffering to be hungry now! I can basically eat anything. Not having any trouble at all. In fact, I wish I was having a little, tiny bit of more trouble! Like maybe having my mouth wired shut or something like that! Maybe when they tighten the band, things will get easier.

I have talked to a few new people who are planning on beginning the training for TEAMJAKE this December. Jeannie... go, girl, go! Tell Shelly she needs to be there too. Jeannie Pederson is going to train for ALL 26 miles! A first marathon, and reportedly a last.... but she said she is going to do it for JAKE!

I was trying to find a computer cord earlier, as it struck me that I really needed to update. I looked at the clock, and yep... 8:11pm. Todd wouldn't let me have his yet, so I went to the bed, and waited. A while later, I felt urgency to update, and hollered at Todd to SHARE! I looked at the clock, and yep... 9:11pm. ANd now that I am officially finished with this super long update... yep... 10:11pm. That Jake is ALWAYS with me!

Don't miss the new slideshow. I found some new "OLD" pics. These are of Jake's 2nd birthday. He was so precious. I wonder how many times I can make that exact statement?! Anyway, the captions under each picture should explain the day. I miss him. I miss him. I miss him!!

I promise to do better on the updating...

Mo




Tuesday, April 17, 2007 9:11 PM CDT

Wow...9:11...Hey Little Geek!

Well, I have one more story to share and then I'll turn the keys to the journal back to Mo for awhile.

First, the Relay for Life was really exciting and fun. We had a booth set up with our foundation colors of lime green and black balloons, pictures of Jake, and 400 bags of M&M's to pass out to walkers. The Relay was dedicated to the memory of Jake. They talked a little about my amazingly courageous nephew and honored Staci and Don with a plaque. Precious tears remembering precious times!!!
Hope you can join us next year!

OK, now for my story...
Chris(my hubby), Eddie(my brother), and I are coaching a t-ball team with Maggie(my daughter) and Tucker(Eddie's son) on it. For those that do not know...Tucker, Maggie and Jake were all born within a month of each other as you can see from the slideshow above. The Three Musketeers! Well, we are taking Jake on the field with us as the name of our team is the Jake Raborn Foundation. We are green and black like a bunch of little Interstate batteries. So, Chris and I were contacting all the players but couldn't seem to get in touch with one set of brothers that are on the roster. Finally, after some calling around, we got 'em. Chris explained to the mom all the times for practice, etc. Then, she asked..."By the way, what's the name of our team?" Chris began to tell Jake's amazing story. He could hear a sniffle or two on the other end of the line....not uncommon when people hear of Jake. But, the lady told Chris..."Yes, I know him...I'm Marla, one of Jake's hospice nurses!!!" SHUT UP!! Are you kidding me??? We were soooo excited. She was just as excited saying this was the first time for her boys to play organized sports and wanted it to be a good experience. I hope we can live up to her expectations. Uncle Eddie has been careful to tell the boys and girls on the team a little about Jake, what happened to him, where he is now and we say a prayer at the end of every practice. We put our hands together and "1,2,3...GO TEAM JAKE!!!" Jake may not physically be on the field with us but he has CERTAINLY already had a hand in the making of this team. What an amazing legacy he has left us to cherish...

Thanks for letting me highjack the journal a few times...
I'll be back with more stories later...

ALWAYS BELIEVING,
Jake's Aunt Bonnie

Tuesday, April 17, 2007 9:11 PM CDT

Wow...9:11...Hey Little Geek!

Well, I have one more story to share and then I'll turn the keys to the journal back to Mo for awhile.

First, the Relay for Life was really exciting and fun. We had a booth set up with our foundation colors of lime green and black balloons, pictures of Jake, and 400 bags of M&M's to pass out to walkers. The Relay was dedicated to the memory of Jake. They talked a little about my amazingly courageous nephew and honored Staci and Don with a plaque. Precious tears remembering precious times!!!
Hope you can join us next year!

OK, now for my story...
Chris(my hubby), Eddie(my brother), and I are coaching a t-ball team with Maggie(my daughter) and Tucker(Eddie's son) on it. For those that do not know...Tucker, Maggie and Jake were all born within a month of each other as you can see from the slideshow above. The Three Musketeers! Well, we are taking Jake on the field with us as the name of our team is the Jake Raborn Foundation. We are green and black like a bunch of little Interstate batteries. So, Chris and I were contacting all the players but couldn't seem to get in touch with one set of brothers that are on the roster. Finally, after some calling around, we got 'em. Chris explained to the mom all the times for practice, etc. Then, she asked..."By the way, what's the name of our team?" Chris began to tell Jake's amazing story. He could hear a sniffle or two on the other end of the line....not uncommon when people hear of Jake. But, the lady told Chris..."Yes, I know him...I'm Marla, one of Jake's hospice nurses!!!" SHUT UP!! Are you kidding me??? We were soooo excited. She was just as excited saying this was the first time for her boys to play organized sports and wanted it to be a good experience. I hope we can live up to her expectations. Uncle Eddie has been careful to tell the boys and girls on the team a little about Jake, what happened to him, where he is now and we say a prayer at the end of every practice. We put our hands together and "1,2,3...GO TEAM JAKE!!!" Jake may not physically be on the field with us but he has CERTAINLY already had a hand in the making of this team. What an amazing legacy he has left us to cherish...

Thanks for letting me highjack the journal a few times...
I'll be back with more stories later...

ALWAYS BELIEVING,
Jake's Aunt Bonnie

Tuesday, April 10, 2007 10:32 PM CDT

THE RELAY FOR LIFE IN OUACHITA PARISH HAS BEEN MOVED TO THE MONROE CIVIC CENTER DUE TO FORECAST OF SEVERE WEATHER. THE TIME IS STILL 6PM TO 6AM. BRAVE THE WEATHER AND COME JOIN THE FUN TO HELP RAISE MONEY FOR A CURE.


A couple of years ago, the American Cancer Society’s Annual Relay for Life was held at Ouachita High School. It was the first relay since Jake's DX and we wanted to be out there in full force to support Jake. We had our new gold and purple BELIEVE t-shirts and
we were ready for Jake to make that lap on his 4-wheeler with PawPaw Raborn and the other survivors.

Well, an old bad fever set in and he couldn't make it but NEVER FEAR when Jake’s family is near. HA..anyway,Jake was an honoree at the Relay. The whole she-bang was in honor of his courageous fight.
Since Don and Staci could not make it…Super Mo got up in front of everyone
(we all joined her on the platform except Nana, who was bound to a wheelchair…)and MO gave the greatest speech about our nephew, Don, Staci, Hunter and Hayden and their courage in the face of such a beast as cancer. Not a dry eye in the place!
Then we ALL walked and pushed Nana Raborn around the track on the survivor lap in the absence of Jake.
After that I continued walking until around 5:30am...23 miles in honor of my little geek.
Anyway...that was two years ago.

Last year, the relay was held at Sterlington High. The weather looked gloomy, as did things with Jake,
as he was facing two brain surgeries but still fighting with that amazing spirit of his. Nana was no longer with us physically but watching down from Heaven must have talked God into the most beautiful rainbow that crossed the entire sky.
She was letting us know that it might be raining but the rainbow was coming.

Well, I went to the final meeting tonight for this year's relay. A little hard at times to go I must say, but again they have chosen to honor my precious nephew. This year, the whole she-bang will be in memory of him.
What better way to honor his memory than to raise monies to find a cure for cancer....for young and old.
Wouldn't it be great for St. Jude to be a museum one day???

Some of you may be on a team for Friday night’s relay….
Some may want to come hang out and support the Jake Raborn Foundation….
or if you just show up Friday night to participate in the great family atmosphere…do something to help!!!
Opening ceremonies are scheduled for 6:00. They will be honoring Jake by giving Don and Staci a plaque.
Bring your kids…There will be lots of games, food, and fun things for everyone. The relay is at Ouachita High School (that's washita for all you foreigners) on Hwy. 594 on Friday, April 13. The date might be the 13th but I bet Mr. 11 and Nana show us something special that night.

Come be a part of it...
Always Believing,
Jake’s Aunt Bonnie

Wednesday, the 4th!

EASTER SUNDAY 9:00pm

Don always told me to write on the journal and today just seemed like a perfect one.....

First...I hope everyone had a blessed Easter!!! We have had a wonderful day!! We started by joining our church family this morning and regular family for the rest of the day. It was our little trips in between that really made the day worthwhile.

We went to the "angel garden" to say Happy Easter to Nana Raborn. (We took Jake his motorcycle basket with plant inside yesterday...Maggie made sure it was not a flower cause as you know Jake is a BOY!!) Anyway, we were driving in the gates of the angel garden and Masie noticed there were quiet a few people visiting the cemetary today. She asked why was today so special??? I was able to share with her why it is SO SPECIAL!!! Today, Easter Sunday is the reason we can keep going after losing something so precious as Jake and Nana here on earth. If it were not for the resurrection of Jesus Christ, what would we have to hope for??? Christmas is great, but everyone has a birthday...ONLY Jesus has a day where he went to depths we will never comprehend and took away the power of death. Sure it hurts, believe me, there are very few minutes in the day that it doesn't hurt. BUT, thanks to what HE did, it won't always be that way. There WILL be a time that I get to talk to my mom again...there WILL be a time when Jake pulls on my leg and tells me to chase him. Without Easter Sunday, that would never happen. So THAT's why today is so special. It IS the REASON why we HOPE, why we BELIEVE, and why we KNOW that we will see our precious ones again. I hope you know the Jesus that I am talking about so you will have that peace and assurance of that you will see lost loved ones again in Heaven.

Again, I hope you had a FANTASTIC Easter Sunday and give your loved ones an extra hug!!

I love you, Mama and miss you even more!

Jake, give Nana a hug and I ate some M&M's for you today...ya little geek!!

(Don, thanks for letting me take over the journal)

Jake's Aunt Bonnie






Believers... UNITE!
We have a good friend, Spencer, who is at St. Jude and who has been fighting so, so hard. Today, he got some YUCKY news. We have certainly been there, so we KNOW the fear and doubt and all the other NO good feelings going through their minds right now. It is at these LOW, LOW points that I know they need others to ASSURE them that there are people praying and standing in the gap for them! Please go visit Spencer at www.caringbridge.org/visit/spencerboyer Let him know we are united in the body of Christ and will be praying for his healing! Tell him Jake sent you!!
Thanks, Mo

Oh, and by the way, the new pics of Jake was our attempt to copy pages from his baby book and showcase that cute, cute baby for you! We may try to get them a little bigger in the future. Thanks for keeping up with us! Staci and the boys are off to Galveston for the holiday week. Schlitterbaun?! The world's biggest water park?! They are just jet setters! I am doing fine! Thanks for asking... still only liquids. But sometimes, I lick on chicken and then pretend chew just for kicks! Mo


Hidey ho...

I thought you all might enjoy a brief little walk back in time to see sweet Jake as a baby! He was so, so precious. I am going to get his baby book (scrapped, of course) and show some more in the next couple of days. Who ever knew at that time what lay ahead for this precious boy. He was so full of wonder, and one can see his spunky attitude even then.

Stay closely tuned in, because Jessi has the next 3-4 slideshows ready to rock and roll! I plan to change them every couple of days.

By the way, Preggo is doing fine! We hit the big Canton Flea Market this past weekend, and Jin was constantly worried about her walking so much. She was a super trooper! I, on the other hand, joined Jin in renting the scooter! We hung our shopping carts on the back, and away we went. Todd and Don were so excited about all our scrap tin and old wooden recyclables! Staci found some oh-so-cute M&M figurines for an Easter wreath for Jake!

Chris is home from surgery, so I suppose, babysteps. Sorry, I havent' talked to Bonnie for a full report. This brief update provided by brother-in-law, Don! (not very detailed)

The boys are on spring break this week, so I think Staci is hoping to get away with her two big boys. She is as bad as Carmen Sandiego!

MO

Saturday, March 31, 2007 6:30 PM CDT

Dropping in to catch you up on several things:

1) HAPPY ANNIVERSARY to my beautiful wife. We have been married 6 years today. Staci - I can't put into words what you mean to me. We have certainly covered everything in our wedding vows - for better or worse, richer or poorer, and in sickness and health - and we're still together. I still stand in awe at the way you took care of Jake. You were there for him 24/7 and he loved you for that. You are the perfect mother.

2) Uncle Chris is doing well after his surgery. Please keep him in your prayers for a smooth recovery.

3) Staci & the baby are doing well. The visit to the doctor was good. She is now 12 weeks. Around 18 weeks is we can find out what we're having.

4) Shake 4 Jake is coming along. Put it on your calendars for June 30th. Once again, if you would like to donate something to the auction then just shoot me an e-mail listed at the bottom of this page and I will tell you where to send it.

Missing Jake more than anybody can imagine. I love you sweet boy!

BELIEVE,
Don

Tuesday 12:21pm

Well, I am up and at em! I took my little walk around the ward, so things are going well. Liquids only so far, but can’t really complain! And by liquids, I mean water and apple juice ONLY! I get to upgrade to yogurt and creamy soups this evening. Yessss!

I thought I would take a minute to explain the slideshow. I was not around to help Jessi pick the pictures, so she just described a set to me, and I told her to go for it. These pics were taken in October of 2004, so we may have to backtrack a bit to find the August and September pics of same said year. I remember going to the Memphis Zoo as a big ol’ crew. I love the picture of the family walking together from behind. That was also the weekend that we showed up, and Hunter surprised his mom and Jake with his freshly shaved head. That was so sweet, and totally his idea! Jake thought that was pretty cool. There was a particular gorilla that Jake and Don were mesmerized by. I can’t remember his name, but they hung out there a while. Naturally, the train was a FAVORITE at the zoo. I also love those pics of Jake, Jin, Staci, Todd, and Don on the train. I remember that like it was yesterday. All those pics taken with the three boys were attempts to get a Christmas card picture for the year. We didn’t know when they would be together again, as three, for the important pic. As it turned out, Jake made it homehome for Christmas (as well as the following two… praise the Lord!!), and if you hang in, you will get to see all the shots from that day too. In the pics on the slideshow, I suppose it is easy to guess what Jakipoo spotted in the air! Yep… a “hairplane”. You can see the excitement and wonder all over his face. He was only 2 ½ years old in those pics. Some in the guestbook have commented about how sick he looked. Well, it is due to going from fully healthy to SLAMMED with debilitating chemo. You can only imagine how that must have surprised his system! In fact, when I find the August/September pics, you will think he looked even worse. The Vincristine was causing nerve damage, and the nerves of his eyes were causing them to droop. He also looked like a baby chick with all that fuzz! Staci refused to shave it. He never even seemed to notice his hair was falling out. No matter what, he always tried hard to have fun. He was such a trooper.

More to follow…
Melanie (did I really just type that?!) MO!


Sunday PM
Hello, all...

Well, let's start with baby business. Staci goes to the doctor this Thursday, but we will have to wait to find out about the sex. Just not big enough yet. Still looking like a peanut. Hunter was asked to join National Honor Society. Quite an honor! Not much going on with Hayden. He and Hunter are on the same team, so that will make all the practices and games sooooooooo much easier on Staci and Don. However, as brothers, not so sure they are all that excited.

I have been out of pocket, and I apologize. I really, really want to do updates, like, every other day. However, work has been BUSY, (thank you, LORD! Business owners LIKE it busy!) and I am scheduled for a little surgery tomorrow morning at 9:30am. Without going into too much detail, let's just say I intend to be a lot "smaller" in a few months! Hint. Not a biggie, but I will be staying overnight in the hospital, just for being watched. So, those are my excuses for not having an update before tonight. I will ask Jessi to put up a new slideshow tomorrow, although I usually try to be the one to narrate the pics, so they may be "plain". But then again, if it is my beautiful nephew, no words necessary! He steals the show, doesn't he? I will try to watch the show and provide the storyline as soon as I am able.

As for the adoption, well, Todd and I continue to have opportunities to send out our "profile", which is our life story to be presented to the birthmother. I am excited that we have already had an opportunity for a child, but ultimately it wasn't the one meant for us. Now, there is another child who is needing adoptive parents, but we will have to see if God thinks this is our little angel.

Let me tell you all about a little more coincidence surrounding my new favorite number, 11! I was recently sitting with my friend, Lane, at the club TOdd plays golf at. I was telling him about the weird things that I have expressed to you all about the number 11. Anyway, I told him the many, many oddities that have occurred, and then I told him that if he sat here with me long enough, he would see what I meant. Then, I said, "Turn around and look at the TV." There was a basketball game on and the score was 11-11. He said, "Oh my gosh, that is so wild!" I love when that happens, because it shows people that it is not something that I am just wanting to happen, but is actually happening! So, last night, at a big gala that we were attending at the same club, I was sitting with a fellow St. Jude dad, and I was pointing inside to where Lane and I had had that experience. He and I were talking about all the instances where kids talk to and acknowledge angels when facing death. I was telling him the "11" stories, so he could see that the connection continues after death, if we pay attention. As I am telling him about the basketball game, I say, "Just wait, Byron, it will show up tonight!" Then, I looked down at his watch and it was 8:11PM! I said, "WEll there it is." Todd and I were given a paddle to use at the live auction, and of course, it was 211! Staci came with us, and I looked back and her and said, "Well, looky, looky!" So, hours later, I run into Byron again, and said, "Ok, Byron, so do you believe me? Hey, let's look at your watch again." When we did, it was 11:10pm. I said, "Man, I just missed it!" He looked back at it, and said, "No you didn't. Here it is!" Sure enough... 11:11pm! HEY JAKE!

Ok, so this morning, I am sleeping in, and trying to convince myself that I NEED to get up and take my behind to church! I was really sleepy, and fell back asleep after turning off the alarm. I woke up a little later, peeked at the clock to see if I could still make big church, and it was 10:11am. I KNEW it was Jake saying, "GOOOOOOOOOOOOO, MOOOOOOOOOOO!" So, I hustled and got it in gear and made it. And as usual, it was a blessing! Ok, so during church, Bubba Greg asked us to turn to Acts, and when I did, I flipped my Bible open to Acts 11:11. I didn't really read the scripture, because I was trying to keep up with his sermon, but I couldn't help notice the numbers at the top of the page! I started thinking of all the coincidences from last night and wrote them down. Because it was fresh on my mind, I went out to my car, sat and looked at the steering wheel and said, "OK, Jake, come visit me." I put the key in the ignition and immediately checked the time. It was 12:11pm. I mean, ole Jakipoo follows me all day long. It is so comforting. NO one could believe me unless they shadowed me all day long. Then I could point all the interesting coincidences as they occur. Ok only a few more. I was told a couple of weeks ago that my surgery would be on 03/26. Yep, add em up... 11! And we were just told about the new baby that is a possibility. All we know is that it is to be born in April of this year. That would be 04/07... um hmmm..... 11!! Is that enough for you for tonight?! Be looking for Jake around you. I bet you will see it!

Alrighty then. Gotta go to sleep. I am looking forward to a liquid diet for the next 2 weeks, so I NEED YOUR PRAYERS! UGH! Keep checking in. I will make sure Jessi makes a GOOOOOOD slideshow to make up for the wait!

For the record.. Not sure how to spell "coincidence" despite it being used several times in tonight's update, so if I am wrong, let it slide. And, I am still searching for Jane Jones.. Linda, where is she?!

Peace out. or as Jake and Todd used to leave each other every visit, "Peace, Bro!"

MoMo

Tuesday, March 20, 2007 7:59 PM CDT

Hello again...

First, I guess I need to address some questions that keep coming my way. Staci seems to be doing better with her morning fatigue. I am not saying she is wanting to rise and shine, but when she does, she can get on up and stay up! Don has bought himself a new little toy, a tractor, and he is looking forward to doing a little work on the new land, which by the way, I realized is 11 acres (get it... 11?!). It was preordained! As for me and Todd and the adoption thing, well, we are muddling through! We jumped right on getting our homestudy down by a social worker, and I have completed our profile which is what is sent to birthmothers to describe our lives to them. And may I say, it is so, so cute! Scrapbooking rules! The way it works is that we hook up with an adoption attorney (which we have already done) or an agency, which we are presently waiting to be accepted to. They, then have to wait until a birthmother contacts them to see if their situation is one that matches ours (in our case, caucasian, no mental or physical handicaps, newborn, and no history of mental illness). Well, that is our wish! If such a baby is going to be available, they contact all the parents in waiting who are looking for a similar baby. They present the birthmom with all the "profiles" of these parents, and we are at the mercy of the mom to pick us!! WHew! I put all of this on here to also use this site, this one and only time, to say if anybody out there has a contact or knows of someone who may be in a "predicament" and is looking for birth parents, let me know. Please don't give THEM my information, just contact me, as I trust our believers! Ok, thanks Staci and Don for letting me do this. ANd of course, Jake!! Speaking of Jake, We have met people who have certain things that are just "signs" to them that their child who passed away is "with them". For instance, Shae sends butterflies. Jacob's parents always see the cardinals. I can't say there has been anything particular, but there are times that it is so strong that it feels that Jake is with me and "speaking" to me that it comforts me in a way I could never describe with words. This happened today when I was out sitting on the ground in my garden. Jake liked Mo's Garden too, and he knows how much I LOVE my garden! A songbird was going NUTS with its singing! I looked up and finally found it, and that little bird must have sung for 30 minutes straight! I just felt my little Jake there with me!

I have had TWO people email me in the past days who dreamed of Jake. (yep, two... Mindy and Dottie) Both of them had really sweet dreams that were powerful to them, and I want to thank them for sharing with me. Oh, and Dottie, EXTRA is Todd's favorite gum! Does that fill in the blank for you? ANd Mindy, I am glad you got some head sugar of your very own!

Ok, to keep the Jake train rolling on, I am putting on a new slide show. These are pics of the first time Jake got to go home after his first week of chemo. He was so thrilled to go home. I particularly remember asking "who is happy to be home, raise your hand." Jake and Staci put up a hand, then Jake threw BOTH of his in the air. There is the 4th of July when Jake came home and spent the evening on the couch, but happy to be over at Emma Lou's! All the kids were outside, but Jake didn't want to go outside, so his dad held him by the big windows and they watched them together. I am so amazed by how Jake would smile and tease, even when we all knew he felt AWFUL. I think he did it to help OUR feelings sometimes! I intend to keep the tale of Jake coming with the pictures. It seems cathartic for me!

Thanks to those of you who are still following the website. Tell your buddies, who once read daily, to pick back up, as there are...oh, about 19,975 more pics for me to post! Hey, Kathy G., glad to see you are still lurking around!

Jane Jones... where are you?!

Prayers needed for a follower. She asked that we pray for her sister Melissa Brasher and niece Jacee. Jacee was born with a virus mom passed on during pregnancy. Both are not doing well and need prayers. Thanks

mo

Friday, March 16, 2007 11:26 PM CDT

Ok, well here I am...
and most of you are probably sawing logs about now. I struggled with whether or not to put in pics of Jake feeling so rotten at the beginning of treatment. I chose to be selective. Some of the pics I have really make me want to cry just to see them. They evoke a lot of emotion, as I recall Jake just clinging to the rails on his bed and he would NOT look at me to let me take his picture or even to talk to me. I think he felt like he was at death's door. It would be hard for us, as adults, to anticipate and then TAKE that kind of blow to our bodies. Jake was running and playing and being a 2 year old when he was hit HARD with a big fat round of chemo. And this was high dose, bad mamma jamma chemo! I will never ever forget how it hurt my heart to see him suffer. And, I can only imagine how it hurt Staci and Don. And... the grandparents who had to watch their grandson hurt as well as their children, physically and emotionally. It was just a yucky, yucky time! The pics I will be adding as the new slideshow are during that time. It was during this time that Jake stopped walking. We tried to keep his spirits up as much as possible with activities and entertainment. The whole famly was there. There was a constant stream of folks going downstairs to vending, or out for everyones' meals. There became no reason to keep up with separate tickets! Whoever went out just took care of everyone. That is how it was for over two years! We have some pics of initial move to the Ronald McDonald House. This became his home away from home. You will get LOTS more insight on this place as the pics continue to roll. I have to call Jessi at home in the morning. She took the slideshow home tonight, as I asked her not to post it until I could update. Some of the pics are "pitiful", and I wanted to explain prior to the new slideshow. If I left out telling pictures out, the next round (his first time home since going to St. Jude, chemo, and diagnosis), wouldn't be as significant! You have to know where he has been to understand how AWESOME it was when he got to see his brothers, his dog, or his house! So, hang in there on this round. It will get sunny on MOnday! MO

(I am keeping my word, Linda!)

Thursday, March 16, 2007 4:05 pm

Friday, and I am just letting everyone know that there will be a new update and slideshow by the time I go to sleep. I have LOTS of things to show you, and some of them are tougher than others. We are now up to the first round of chemo, and I struggled with whether or not to include pics. I will explain more later. If you havent' poured over the pics in this one, do it now, as they will be gone tomorrow. Ok, if you absolutely MUST have one of the pics, email me, and I will try and get you a copy. Denise Yates loved Jake in his LSU cap, and I obliged. Of course, you can thank Jessi for helping me on that one. OK, until later. Mo


I am typing this in Word and hoping my wireless allows me to post it in a little while, as I don’t want to experience the wrath of Linda or Libby!

SO, as promised, here is the update. I think I am going to go back into the archives of Jake Owen Raborn and bring out some good memories. There may be some not so great ones too, but as he DID go through two years of stinkin’ chemo, some of them are just not so wonderful! So, to explain all the pics on the new slideshow, here is the story.

The pics start with the first few days at St. Jude. Jake is wearing the original bracelet he was given at our local hospital when they just took him in because his belly was swollen. As you can see in a couple of the pics, it wasn’t really dramatic, just looked like a little toddler’s pot belly! Boy were we ever in for a surprise! Jake went in on a Monday afternoon (Memorial Day) and all we heard that day was, “there is a mass”. We were all freaking out about just that! Then, Tuesday AM, we heard the horrible C word, rallied, and never looked back. The trip to St. Jude occurred that very day! Aunt Marina’s sister, Phyllis, helped organize a private plane to get Jake to Memphis ASAP. Me, Staci, Pops, and Don all went with Jake. I will never forget the confusion on his face as he was strapped to a gurney. This coming after two years of normalcy… that is enough to make anyone wonder what in the world was going on! Bless his little heart. Everyone was trying to be tough and keep their cool, but our faces told it all. Poor Don was crying all the way there. He read the doctor’s report that accompanied us. The night before, we had all been studying liver tumors on the internet, so we knew what we were dealing with, and we knew the odds were not good. There were so many good friends at the hospital in West Monroe to see us off…. I mean 30 ! Word travels fast in a small town. I don’t know if I have ever shared this, but as we were getting on the plane, and were sitting on the tarmac, I realized the latest invitro treatment I had gone through had failed, and was OK with it. I just KNEW that God was telling me that the miracle I had prayed for, in the form of a baby for me and Todd, was being shifted to our sweet Jake. In a heartbeat, that is how I would’ve wanted it! And, as we soon found out, it all worked to the best, as Todd and I needed to be very flexible in our homelife and our freedom to travel every weekend! Ok, enough of that.

I told ya’ll that Jake was a beautiful kid, with that cotton top. I had planned to go Waaaaay back and get pics of Jake as a little bitty one, but changed my mind, when I got diverted to these cute pics. I will still show you him earlier on some other day. I look at those pics of Jake and Staci in the hospital bed and kinda laugh, as I just imagine that Staci had no idea that she would be sleeping in that little twin bed for the next two and a half years. Remember the pic of Jake wearing his mom’s shoes? Well, I stayed the first two to three weeks in Memphis. Within a day or two, I was feeling useless. So, I did what I do best… shop! I went out and bought everyone who was there with us a new pair of Nike Shox! Staci, Don, Jake, Me, Dad, …. We all laughed, because I like to fix things, but couldn’t’ “fix” this, so I just thought buying new tennis shoes would cheer everyone up. That is a pic of Jake trying on his mom’s! Anyone read the book about “love languages”? Well, mine is apparently showing people I love them by buying them things.

By the weekend, Todd had brought the big boys up, and they had no idea how many times they would be making that trip! They were so supportive. Lord knows they HAD to FEEL the tension that everybody had. They just got on the floor and played with their little brother. Jake perked up big time when he saw his brothers….then again, that was EVERY time for two more years! One of the pics is of our buddy, Madelyn Beamon, who was our first “friend” to come down and visit. Jake was shy, but Madelyn just came right on in and said, basically, let me at those toys! Jake was scared and for the next few weeks, he felt HORRIBLE. He didn’t talk, didn’t smile… but he would stick out that tongue to let us know his humor was still intact. It made our hearts SWELL when he stuck that tongue out. You will see LOTS of pics of that tongue!

The pics of Jake taking his JinJin’s vitals and the one with his sweet Nana Raborn showed how the ChildLife team brought toys for Jake to use that would familiarize him with the tools that would become part of his daily (huh…. HOURLY!) routine. He was such a trooper! Another daily event was getting his “bracelets” for blood transfusions and patient ID. I still have several of his bracelets and treasure them.

That last picture of Staci and Jake, with him resting on his mom’s chest is such a vivid memory. That was the day he got his buddies. I remember a room full of family and friends, all sitting on pins and needles, waiting for him to come out of his first surgery… the first of many, many! I also think it is odd to see pics of Jake without his buddies. They became such a part of him! Those little “lifelines” hung from him for over two years. I find that hard to believe. When he had them removed within a few months of his death, they were moved a little to the side, and Jake wanted us to put them back! They were just a part of him! I wish we had those too, but because they had a fungus, they had to be sent to pathology.

Well, that should give you a little blast from the past. I hope to do this type of “walk down memory lane” with another 21, 990 pictures, so hang with me! There will be LOTS and LOTS and LOTS of pictures you have never seen! So, hang in there. Don has given me full clearance to lock and load with this website. He has unleashed a monster.

If you aren’t busy this weekend, come by the West Monroe Convention Center. Jake Owen Raborn Foundation will be represented with a booth, and the logos and details will be there. Don is working on releasing all the info in a really cool and thorough JOR website, so hang on a little longer, and you will have full access. We would love to have you at AlphaFest with us.

If this doesn’t make the website today, don’t blame me… I can’t get it on there. If our wireless cooperates, then you will get this today… as promised. Love to you all.
Mo


Wednesday PM: Put those pitchforks down, ladies! (and gents... LUKE!) My wireless internet was down last night, and as promised, I wrote a big long update, and saved it! The cable man came to the house today, so I hope to go home tonight and post it. I am at work now, but wanted to let everyone (LInDA!) know that I am a woman of my word.... so get ready to be enlightened. Annnnnnddd... keep coming back, because we are about to take a trip down memory lane. MO

Sunday, March 11, 2007 9:47 PM CDT

I can't stand it... I MUST interrupt this show to give you some CRAZY information!

We had our Spring Market here today, a big show sponsored by the Junior League in Monroe. It is where vendors gather for a big show of boutiquey-type items for purchase. Well, in order to raise money for the junior league, raffle tickets were sold. And the prize... a brand new black Saturn convertible! Well, lo and behold, guess who won that thing. JIN JIN!! Her name was called, and she went to collect her prize.

These have been some CRAZY, crazy, crazy 5 months. I mean, roller coaster! From Jake's death to Staci's big 4 million dollar jackpot to her being pregnant, to now Jin's big win. I know I have emphaized the unusual occurence of the number 11 throughout Jake's last days and then after he went to heaven. A couple of weeks ago, Pops had a revamp to his surgery from the heart bypass in November. We had to go stay in Shreveport, and we stayed at what we now affectionately call "Staci's Casino". Anyway, I went down to the casino to look at the slot machine that Staci had hit the jackpot on. Have I already relayed this story?! Well, if so, here it goes again. There are two serial numbers on every machine. On the machine Staci won on, the two numbers added up to 11. I then started obsessing and looking at every single machine in the casino. If there were security cameras, they are probably still looking for me, as I am sure I looked suspicious. I NEVER found another machine where both the numbers added to 11. I found a machine with one 11, but not two. OK, and just as a reminder, Staci was sent to Suite number 11, and TOdd and I were given a room, several floors down, in room 11! So, you see where I am going with this. Actually, I have started noticing 11 on the hours when I am facing things that are difficult regarding my clinic, and noticed that Todd and I left for our social worker appointment(in New Orleans, for adoption purposes) yesterday at 10:11am! The moment we walked in the house, I peeked at the clock and it was 11:11pm. I yelled to Todd, "Jake is welcoming us back, and I think he is trying to tell us that he is taking care of it for us."

Ok, that was a lot of set up to say taht when Jin won her car today, I said, "Mom, you have to check your ticket, because it MUST add up to 11 or have some 11 significance, because I am sure Jake is attaching his signature to this one too." She looked at her ticket, and it added to 15, so I was like, "Oh well, what else is on the ticket?" She said, "Nothing, just the drawing will be held on March 11th!" I said, "AHA!" So, Jake wanted to show off a little on his "special day". How cool is that? Now Dad and I are waiting on our "prize". (That is what Jake called the treats we would bring him on our trips to "Miphis". Actually, I am expecting a little bundle of joy, and Dad feels like his life his his "prize"! We are plenty blessed!

Well, I spent the day with Hunter, and it tends to bug me that the boys don't talk about Jake much, so I try to interject it a little into our conversation. We were looking at tennis shoes, and I said, "Which ones do you think Jake would pick?" Hunter picked a pair, and I picked a pair. AMazingly they were very similar, both black Nikes with lime green trim, but two different styles. Anyway, Hunter studied them a minute, then said, "You know, I think his foot would be bigger than this by now. I think he might need some from over here. (moving to the big kid size shoes) We then spent a little time figuring out how big we thought his foot would be by now. I liked that!

We have a big shindig planned to celebrate Miss Cindy's new book, Johnny Jackalope, you gotta Believe in Hope. She has a big kid day every year, to release her books, called Alphafest. It is this coming Saturday, so everyone will be celebrating with GREEN! ANd, since the "believe" is in the title, that is the theme of this year's ALphafest. If you are near, come on down to West Monroe, and celebrate with us. This book was dedicated to Jake, and actually, there is a dedication to me and Todd in the back, as it is a story about adoption. If any of you out there are looking for a book on adoption, look into this one. For more info on AlphaKidz books, check out Cindy's website.... www.alphakidz.com and stay tuned for Melanie Mouse, It is a very sad day at our house, which is the book that is dedicated to her son Sammy, who passed away a couple of year's before Jake. It is about how she explained that to her, then, four year old.

Well, be on the lookout this week for a new slideshow. I am going Waaaaaaaaay back, and will show you all some pics of Jake BEFORE he had that stupid, unnecessary thing called cancer. He had a gorgeous headful of curly cotton top blond hair!! Gosh, he was so cute! We surely do miss him! Now look, If I know you have read the update, as I can only know by the number of people who sign, I will try and update every day to every other day this week. I promise!!

Thanks so much for your continued support.
MoMo (I loved when Jake gave me that Funny name. He thought it was so, so funny, and I acted like I hated it just to make him keep teasing me with it!)

Sunday, March 4, 2007 10:43 PM CST

Staci went to the doctor this week and everything is looking good. The baby was 1/2 inch long and growing. She is still extremely tired. The due date is still October 13 th.

BELIEVERS - I have a project for you and it's a big one. We have decided to have an annual event for the Foundation and we need your help. On June 30th we will have the Shake 4 Jake. It will be a dinner/auction/dance. It will be here in West Monroe and it will be an annual event. Here is where I need your help:

We will be having a live and silent auction. We NEED items for these auctions. We are looking for live auction items such as condo for a week, tickets to an event, or anything along those lines that might be a good live auction item. We are also looking for silent auction items such as gift cards, gift certificates and so on. We need anything we can get.

Please send me an e-mail at sraborn@jam.rr.com if you would like to donate something or if you have any questions.

Please make plans to attend this event. It is a few months out so you have time to plan. Come to West Monroe for the weekend and help raise money for kids that are fighting for their lives. Your generosity will help provide some comfort in their lives.

Thank you so much for your help in this project. You're making a difference in a kid's life.

BELIEVE,
Don

Wednesday, February 28, 2007 9:45 AM CST

Dearest Jake Believers, Lurkers, Jake-a-holics and M&M lovers,

I notice many of you want a journal update and I know there probably is not much happening but the finalization of the Foundation paperwork. I haven’t even talked to Don since this past Tuesday or so because I have been in the deer woods in Arkansas for the last few days of bow season.

But the foundation (or its members) is what I want to tell you about if Don will put this on the journal page for a day or two.
I was invited as a guest to the second actual board meeting a few days ago and, boy was I IMPRESSED!!!

I don’t think I have ever seen such a bunch of young people so excited and dedicated to a cause as these folks were. It was almost as if Jake had infected them with his spirit, like when he would be on his electric four-wheeler and would come right at you, knowing you would move…because he would run over your foot and just look back and laugh at you. These people have that same tenacity. They may not follow, what is it?”Roberts Rules of Order”???
But they are out to get a job done and I hope they don’t run over anybody’s foot but THEY ARE ON A MISSION!!!!!!

Even though “BELIEVE” has been our motto since Jake was diagnosed, it is still hard to believe how much his short sweet life has affected so many people’s lives. And remember, and this is my own thoughts and may not reflect the thoughts of the foundation’s Board of Directors, this Foundation was NOT formed because Jake passed away from cancer, BUT because a sweet angelic, a normal little toot of a boy LIVED A COURAGEOUS, GLORIOUS, FUNFILLED LIFE and touched thousands upon thousands of lives with his courage, bravery, antics and general overall goodness. And don’t forget his parents and brothers are pretty awesome also.

And he would want to be remembered just as these folks in this foundation are doing, (and I am sure some of you out there will be asked to do something every once in a while) going about the business of helping other children and families of children with catastrophic diseases, maybe in some small way even helping find a permanent cure for some of these diseases.

Any I may be a little prejudiced but I am also old and senile so I can ramble on like this ….But I am so proud of the guys and girls I am just busting at the seams. I know you all want to see logos, cards, posters, shirts, etc and I am just as anxious as you are. At my “guest attendance” I was given a “sneak preview” of what may be the logo and I think if it is anywhere as nice as I was shown, it will be worth your patience.

Anyway I just wanted to ramble and give you my take on what I think what will be called “The Jake Owen Raborn Foundation” (see… I am not even sure about that) but I am sure that these energetic, brilliant, dedicated people on this Board of Directors are going to give their ALL plus some in honor of Jake’s LIFE and this will be a great endeavor in honor of a great little man…….

A rambling, senile, tired old deer hunter…
PawPaw Raborn

Sunday, February 25, 2007 0:31 AM CST

Finally! AN UPDATE!

It overwhelms me to see how many people are still checking in. WE LOVE IT! I promise we will update more as we certainly have a lot more happening.

Staci and the baby are battling for Staci's energy and the baby is winning. Staci is WHOOPED! I love it when she is pregnant. She just looks so cute. We are so excited about this baby. Staci goes to the doctor again on the 28th so I will let you know how that went.

Staci the Superstar keeps on rocking along. On Thursday, a photographer and his assistant flew from New York City to do a photo shoot on Staci. She is being featured in magazine article. The magazine is Total Rewards and is put out by Harrah's Casinos. The article will talk about Staci's jackpot, Jake, and the foundation. It should be in the spring/summer edition.

The foundation is moving along very nicely and in the final stages of legal work. We should be open very soon and are excited about our mission and goal. Stay tuned because I'm counting on Jake's Believers to help us out on a couple of projects.

The foundation has been great therapy for me. It makes me feel like I'm doing something for him and I guess I am. We're hoping to help families and children fight this horrible disease.

Hunter & Hayden are doing fine. Hunter is just getting over the flu. Baseball season is about to start and both of the boys will be on the same team.

I miss Jake so much. My mind races 24 hours a day about him. He was my little boy and I miss him terribly. I've tried many times to explain to you how amazing he was but it still blows me away how special he was. I wish each and everyone of you could have met him. He was absolutely perfect.

Keep checking in. I think we're all about to be part of something special with this Foundation. It will be one of a kind and the absoulte best - just like Jake!

BELIEVE,
Don

Thursday, February 15, 2007 9:57 PM CST

Friday 2:11!!
Well, as promised. The slideshow is a time we spent at the Pierces just before bone marrow transplant. Jake was feeling as good as he EVER had! We sure do miss this little man. But in honor of him.... we want to remember him like THIS... happy, funny, active, and LOVIN' his brothers.
Mo


Man, you Believers ROCK!!!
I cannot believe the support I saw on Taylor Gibbs's site after PawPaw Raborn asked you to visit. I am so proud of all of you, and know Jake would be too. Maybe this is one of all of our "missions" to stand together and provide a ONE VOICE spport to anyone needing it. There are two more that could really use your support....
One is Matty Duboc. He has hepatoblastoma and his parents are visiting with hospice within the next few days. Read his journal history, and you will see some absolutely fascinating discussions by a little boy who is very aware that he will not be alive later in the year. Even his big brother is wanting to take their Christmas card pics now. I was touched. www.caringbridge.org/visit/matty

The second is Ronell. www.caringbridge.org/tn/ronell
She is 20 years old, but has been going through this stupid cancer thing for years! She was in ICU when Jake was there. She is a truly gentle spirit!! She was also close to our friend, Kail, who passed away Jan.1, 2006. Please go by and visit her too. Her bone cancer is now in her lungs. I learned about her upcoming Make a Wish type dream on Shae Pierce's site (www.caringbridge.org/ms/shaepierce)

OK, well we had FOUNDATION meeting number 2 tonight. We are really making headway. Don has been pretty busy since the last meeting. Marina did her homework too. We set a couple of fundraiser dates. There will be an annual event with will really be the kickoff for the foundation on May 19th. Hey, that is Staci's birthday too!! How cool is that? I haven't gotten "clearance" from DOn to give too much info, so I have to wait. But, go ahead and be shopping for a cool green shirt, jacket, or pants, and stay tuned! That is the only hint I can give you for now. Oh, and start practicing your dance moves. (Sorry, Bubba Greg, we DO LOVE to dance!) Then, Don and Todd have long since been dreaming of a cool Golf tourney and event. Well, we decided tonight that it should be in October. They were checking the calendar, and lo and behold, the best day for it is October 5th. Yep, that date should ring a bell too. That will be the one year anniversary for our little angel, Jake. He will be proud that we are honoring him and his well-lived life on this day by raising money for and awareness of kids who live with cancer. Jake, you would be so proud of your mom and dad, and their family and friends who are taking on this foundation so personally. Now, I KNOW Don would kill me for mentioning ANYTHING at all about the logo, but OMG (shout out to Dawn Pierce!), it is so, so, soooooooo cute! Get ready, you WILL be wanting a tee shirt or cap! We know we will want to be involved in our local Relay for Life in April, and AUnt Bonnie is in charge of that! If you think you may want to join the JAKE OWEN RABORN FOUNDATION team, be looking for a chance to sign up soon. Also, anyone local should be planning to come to AlphaFest on March 17th at the WEst Monroe Convention Center. Staci has a cool fundraiser planned for Jake's booth. You will get to go away with a cool piece of "jewelry" for your wrist. Gotta come by to see it! Visit www.alphakidz.com for more info.

Staci and I have contacted our friends at Habitat for Hope, Mark and Mylissa Horrocks, about decorating and furnishing a room at their "Hope House" in Memphis. Of course, we have a Believe theme in mind, and will definitely want to put a pic of Jakeman and his big brothers in the room somewhere. That will be a fun project. www.habitatforhope.com (or maybe org?!)

Speaking of big brothers, Hunter and Hayden are doing just fine. They don't talk about Jake hardly ever. I will say something like, "and who does that remind you of?" And they will say, "Jake". And that is about that! No elaboration. Not a lot of words or emotion. But the fact that they were able to remember Jake with the same memory as I was having tells me they remember in their own little minds. They are just busy being little teens/preteens! Hunter is so busy (and important!!) with all his parties, youth group activities, and such. Hayden is just loving having his mom around. He likes having guys spend the night with him at his house. He is still crazy about dirtbikes and is rockin' the court on his basketball team!

I will try to get good ol' Jessi to change the slideshow tomorrow, even though the "blue hoodie" pics are among my faves!! In honor of the Pierces coming down to visit next weekend, maybe I will look for some early March pics from 2006 taken at their house.

We love you all and are so honored to continue to have such support. Don't stop now. You are on the ground floor of something I think will be really, really big and inspiring. Lots more Foundation news coming soon!!

Mo

Monday, February 12, 2007 7:58 PM CST

Dear all Jake Believers, Lurkers, Jake-aholics and all you other fine people,

I have asked Don to put this on the journal for a few days in order to introduce you to another sweet 2 year old boy with cancer. He was recently diagnosed with acute lymphoblastic leukemia (ALL).

His name is Taylor Gibbs. He is the son of J. D. Gibbs and the grandson of Joe Gibbs, the owner of Joe Gibbs Racing. This is the organization that Jake’s driver, J. J. Yeley races for. I thought it would be nice and something that Jake would want us to do since J.J. had meant so much to him and did so much for him. This will also be an opportunity for a lot of Jake’s Believers to “pay it forward”.

As some of you know Joe Gibbs is a very famous Washington Redskins head coach and is also a very successful NASCAR team owner……this just proves that cancer can strike anyone’s family….famous or otherwise.

Taylor’s CB website address is www.caringbridge.org/visit/taylorgibbs The first time you sign on takes a little time. You will have to fill out a few blocks with your name, e-mail address and a password. Then the next time you visit all you have to do is list your e-mail address and your password. This is something his family has requested for reasons unknown to us but I am sure they have a good reason. But a few minutes extra of your time could mean so very much to Taylor’s family as all the guestbook entries for Jake has meant to all of Jake’s family.

Thanks to all of you for your support of Jake and his family and I do hope you will take the time to sign in Taylor’s guestbook and tell him that Jake sent you…….
And tell them to “BELIEVE”

Thank you all so much,
Jake’s PawPaw Raborn

Tuesday, February 6, 2007 10:04 PM CST

UPDATE Thursday - 8:15PM

Staci went to the doctor and everything is fine. The due date as of today is October 13th. She is a feeling a little better but not much. She is pretty miserable. Please keep her in your prayers.

Don't forget about ULM Baseball game on Friday night @ 6:30. First 200 kids receive a JOR Foundation t-shirt.

Please keep us in your prayers. The excitement of a new baby plus the memories of Jake have both of us riding that emotional rollercoaster.

Always believing in Jake,
Don






Well, I see many of you got a little update on Staci by finding Aunt Bonnie's update on the guestbook. I thought I would try to elaborate, since so many are worried. She really sounds AWFUL! She is heading to the doctor tomorrow. She said, tonight, that she feels like her head is about to explode. On Saturday night, on our trip, she hurt so bad, from head to toe, that she actually thought she may have to rebook her flight. However, I gave her a massage, and she took a Tylenol (once she found out it was OK when with child) and she said she felt much better the next morning. She has been coughing a LOT, but says that has subsided a bit. The whole "hurting" thing sounds a little like flu to me! We'll see tomorrow.

OK, for our trip...
Well, I am a veteran to the bead/gem show in Tucson. This was my 5th year, I think. I have only been to the CHA twice. The sign overhead there read, "World's Fair of Scrapbooking"... Yeesssssssss!!
Staci has always marvelled at the stash I haul back. Well, I heard her on the phone to Don saying, "You know how we always say, 'How in the world can Melanie spend so much money on all this junk.'? Well, now I understand!" It was just a wonderland of all our favorite things! For anyone in the area who is a scrapbooker and would like to look through our "haul", email me at mgroves@jam.rr.com and I will put your name on a list to come and buy "barely over wholesale" when the stuff starts rolling in.

On the way out there, I was looking at some scrapbooking magazines, and I said, "Staci, do you realize we are going to see her, and her, and her...?" She said, "You mean to tell me there are actually 'scrapbooking celebrities'?" Well, YES, as a matter of fact there are! In fact, the very first morning we were at breakfast, and I said, "Oh, there is a celebrity, I think.. I am pretty sure... " Staci said, "Please just let it go." I explained that I HAD to ask becasue this was a biggie!! Well, of course, I could NOT let it go, and lo and behold guess who it was...........MARY ENGELBREIT!! Yes, we ate beside Mary Engelbreit! So cool. For the real scrapbooking enthusiasts, we also saw Heidi Swapp, Elsie Flannigan, and the editors for most major scrapbooking mags.

I can't believe the ticker hit 3 mill. Congrats on that lucky person! Send me your address, and I will send you a prize!! Also, to the person who was watching the ticker and realized how many people still check by the minute, thanks so much. It really means a lot to know that people still feel so connected. It makes us feel very LOVED!!

Staci and child seem to be doing just fine. She kept saying, "Could it be possible that I am showing?" She is about one month into it, as far as I know. But, folks say that as you have progressively more children, you stretch faster. She is on the big numero FOUR! Todd and I are in the big adoption hunt right now. We dropped the ball entirely while Jake was sick, but I have a couple of great friends, Paula and Kellye, who are single handedly forming the Massey-Groves Adoption Committee to help me stay focused and on task. If you have never, look up Precious.org Fill in the blanks for looking at "children using multiple criteria" and look for age 0-0. Babies galore!! They are so cute. Most are from Guatemala. We aren't sure just yet what we are going to do, but please pray with us that it all comes through just as it should. We have had some pretty serious disappointments in the past.

Staci and Don secured a couple of acres for building a house. Wouldn't you know it... Todd and I bought the land NEXT DOOR today!! Now Jin Jin wants in on the action. It would certainly make for some easy babysitting!!

Well, that is what is going on in our world. Our buddy, Madelyn (www.caringbridge.org/tn/madelyn) is back on stupid chemo. She relapsed after 9 months of inactive disease! Come on, girl... you can beat it!! Also, don't forget Matty. He is our buddy to the north at www.caringbridge.org/visit/Matty

I hope to have a new slideshow on here Thursday. Keep watching. It will be of Jake a year ago. February 2006 was the best we had EVER seen Jake feel. This was just before bone marrow transplant (and brain surgeries), and after several months without chemo! He was so funny and full of life. THat will be what the slideshow will be of when it gets changed out!!

MOMO

Saturday, February 3, 2007 11:23 PM CST

Quick Prayer Request -

Staci is not feeling well in Arizona. She will be coming home on Sunday so please say a little prayer for her.

I promise that one of us will update soon.

BELIEVE,
Don



Jake,

Make sure Mommy's "hairplane" gets here safe and sound.

I miss you.

Love you,
Daddy

Sunday, January 28, 2007 5:20 AM CST

1st fundraiser for The Jake Owen Raborn Foundation will be the ULM Baseball Maroon-Gold Game on Saturday Feb. 3rd at 1:00PM. Free kids clinic begins at 9:30AM. All ticket proceeds go the Foundation. Then on Friday, Feb. 9th at 6:30PM is opening night for ULM. First 200 kids will receive a ULM Warhawk T-shirt with Believe on the back of the shirt. Come out and support the team. Coach Jeff Schexnaider was a huge supporter of Jake and has worked to put this together. Wear you Jake shirts and come out to the game.







Tuesday night, aching feet, in our rooms, BEAT!

Hey everybody, Staci and I are in Anaheim, CA. We are at the Craft adn Hobby WORLD'S FAIR! WOooo hoooo. Scrapbooker's heaven. (Mindy, you would just freak!!) We are having a great time. We aren't doing too great on our diets, but we figure we are walking about 100 times more than usual, so maybe that will help level the field. We are heading to Tucson, AZ tomorrow. We have told a few people here about that and they say, "GYM show"? WHat do you do at a "Gym SHOW"? I say, "NOw do we really look like a couple of girls who would go to a GYM show? I mean GEM SHOW... as in beads, and stones, and turquoise and things of the such! I mean, come on people!

To the person who signed the guestbook about meeting up with us in California, well, we have been trying. WE got Jin to email you to help us hook up. However, I have lost luggage, and was only able to get online tonight (due to a missing computer charger). Our cell is 318 376 2131. We would love to meet you, but are heading out tomorrow morning. FUNNY funny story about our MOTHER telling us that you had signed the guestbook from SOCAL. Well, we proceeded to ask our waitress wehre SOcal was, because we wanted to know if you were close to us. She said, well, you are in the southern California region now. I said, "Yea, but like there is ANaheim, Santa Ana, Long Beach, ... WHERE is Socal? Then it hit us! SoCal is So.Cal. or Southern California. Staci and I were laughing so hard we were about to shoot our super healthy breakfast right out of our noses! Ok , more news from the West Coast soon. The little mama is doing just fine, DOn... Oh, and HEY, TODD!! Mo





Staci & I are very excited to announce that we are expecting our 4th child. She has not been to the doctor yet but the tests here at home says that baby #4 is on the way. Once again, we are overhwlemed with some powerful emotions.

We had been planning this baby for a long time but decided to stop last year around the time of Jake's bone marrow transplant. Wise choice considering how much time we spent in the hospital in 2006.

This baby will have the 3 best big brothers watching over it. Two here on Earth and one from Heaven. Jake would have loved this. I'm pretty sure he would have watched this baby like a hawk. By the way, he always said he wanted a baby brother. I'm pretty sure that Jake has connections in Heaven to make that happen.

Pray for Staci as she begins this journey. Pray for the boys as they experience this new part of their lives. They worked so hard for Jake during his battle.

Pray for Staci and Mo. They are headed to California and Arizona for the week. Pray for safe travels.

More updates this week.

Believing that Jake sent us another miracle,
One proud Daddy - Don

Friday, January 26, 2007 10:26 PM CST

Well, I am glad "Cuz" Debbie Earl had a story. She put it in the guestbook, but I felt it deserved a front page honor.It should give you a glimpse of little man at an early age! Here it is...

Dated Jan. 26th:

Masie,
Congratulations on representing your school for such a wonderful honor. Your essay was beautiful and it just shows how very much Jake touched so many lives. You go GIRL!!!!!

Don,
I have a sweet Don and Jake story that you probably don't remember but it sure put a smile on my face. Before Jake was diagnosed with this horrible disease we were all at Pops house for a family gathering. I had only seen Jake a few times and as Paw Paw Raborn said he loved to be in the arms of his Mom or Dad and was shy with a big crowd. When Staci, Don, Jake and his big brothers arrived Hunter and Hayden were more interested in riding their Pop's four wheeler than eating so they took off. All the rest of the family started serving their plates and Don had Jake in his arms as he moved along the line filling his plate with all the family specialities. My Mom and I grinned at how agile his was while holding his precious little boy. Jake promptly looked Don in the eyes while both his hands were full and put his finger right up Don's nose. Don didn't miss a beat and kept moving along with that precious finger firmly in place. I told Mom that day as we laughed that Don was going to be an incredible Daddy and he sure did prove me right. Don you are a remarkable man and Daddy and Jake was blessed to have you. Both you and Staci gave Jake everything that he needed and more. There was never a day that he was not loved with all your hearts.
Well that is my little Jake story. He was full of mischief even when he was little.
Sending all my love,
Cuz
Debbie Earl

Thanks, Debbie... now from MO:

Remembering that you want pics of Jake BC (before cancer), and working on that project... most people who see him don't even recognize him. Cotton top! SOft, white/blond, wavy hair. Didn't take much of that chemo though for it all to fall out. We didn't care... hair schmair! I remember when it all started falling out though. As any of you moms can imagine.. we had been at St. Jude for a couple of weeks, and all we saw were those little bald heads. And believe me, the SHOCK of it all was overwhelming! You try to walk around not looking too much! It was totally surreal! Ya know how sometimes you can't watch the St. Jude commercials cause they are too sad? Well, at least, that is how I USED to be. Same way with ol' Sally Struthers and the starving children overseas. ( Now I watch and see how many kids I know personally!!) Annyywway, we were somehow thinking that Jake may just be THE kid ( yeah, the one and only) who takes high dose chemo, and it doesn't cause his hair to fall out. NAIVE! I recall Staci caressing his little head, and grabbing a handful of that blond hair, looking at us sadly across the hospital room. When most of it was gone, I was saying, just shave it! She said she just couldn't! So, the fall after diagnosis, Jake looked like a baby chick... fuzzy wuzzy! Again... so what! We were so happy to have him. Hunter even shaved his head to surprise his mom and Jake when we went up for our first Halloween at St. Jude. Those are some cute pics! Be looking for them. (JESSI... I need your help. It is in the file Halloween 2004. or Ellapalooza. Thanks) Well, there, I am going to try to start a few stories.

Another story...
I had to go and tell the girls at Lane Bryant that it has been good knowing them, but I would be moving on down to The Limited or Lerner pretty soon! I explained we have had a long and happy relationship, but it had to end. Best Wishes!! (that is true!) Yep, I am on LA Weight Loss, and I intend to get skinny. I figure the more people I tell, the more accountable I will be. Staci said she won't let me get ahead of her, so she is Weight Watching. There, Staci, now YOU are accountable too!! Staci finally told me that if I intended to put ANY pictures of her on the website, I had to have her proof it first. Then, when I totally ignored her, she said, "Ok, here are the ground rules...if I am not wearing a turtle neck, you can't use it!" She be so crazy!!

Well, hope you all have a good weekend. Staci and I will be on a fun, fun trip next week, so we will have to write in from our adventures.

MO

Tuesday, January 23, 2007 10:33 PM CST

--------------------------------------------------------------------------------
Hello and the very best wishes to all you believers, lurkers, Jake-aholics and everyone else that was touched by this sweet little man's short but Heaven-sent life.

You want to hear a Jake story? I have several but one of my favorites is when his late Nana Raborn and I used to get to babysit him some as his parents needed a break or to go somewhere. Now he didn't much like it when his Momma or DaDa would first leave him (this was before he was diagnosed) alone with us. But after a few minutes of Bob the Builder or Buzz Lightyear...he would forget all about his parents (HaHa).
But some of my favorite times were when he would go get the MagnaDoodle, crawl up in my lap, look up at me with those beautiful blue eyes and say "PawPaw, draw me a dirtbike." or "PawPaw, draw me Momma's car" or "PawPaw, draw me Dada's big truck". And he would tell me if there were any parts misssing off these items when I was finished. Of course I would know I had done everything all right when he would grab the little slidy thing and wipe out all my artistry. Then it was draw it all over again....I wish I could draw for him one more time.

He also used to love to show us how he could slide into base like his big brothers Hunter and Hayden did in baseball. He was a HOOT!!!

Another little thing and this was just kinda between me and Jake....Knowing he was "all boy" and didn't play with Barbie dolls...I would say "Jake, you're a Barbie doll!" and he would say "No, PawPaw, I not no Barbie doll!!! Dada's a Barbie doll" or whoever else was in the room, Uncle Todd, Uncle Eddie or any masculine type would become the "Barbie doll". He was so quick to catch on to a joke or gag and he was the "biggest prankster and jokester" in addition to always being the "biggest winner" of all of us.
He loved to have his fun even though at times I know he had to feel rough, tired and sick. But he never knew he was sick. I guess he thought the way he felt was how he was supposed to feel,....He went through things that would bring many a grown man to their knees in tears.

He was just a super little man and I hope none of you out there, even though you have only met him on this website, never ever forget him and what he has meant to so many, in person or through cyberspace. I just wish each one of you could have held him in your lap one time....or to feel him fall asleep in your arms....well, that's a story for another time.

Well, I was just checking and I saw where some wanted a "Jake story" and I just thought I would pass these along.
Please keep his family (all of us) in your prayers, pray for the foundation being started in his honor and memory so that it may possibly bring healing to others like Jake and help bring some help and peace of mind to families of children with catastrophic illnesses. We all know the bills are paid at "The Jude" but that doesn't pay the bills at home or expenses for other members of families while the parents have to leave jobs or take long leaves with no pay so they can be with their child that is critically ill.
So please support this foundation in the name of our Lord and in honor and memory of my little buddy, Jake Owen Raborn.

Thanks for listening to the ramblings of an old man that has a great hole in his life....

PawPaw Raborn

(pasted by Mo. This deserved front page attention. Anyone else with a good Jake memory? I have tons, but not the strength yet.)

Wish Masie good luck as she vies for Student of the Year of our parish tomorrow. We are proud of you either way, Miss Masie. You are OUR student of the year for sure! MO

Sunday am

Thanks, Stephanie for sending the link for Christal's website. If you want the CD, I think it is 20 bucks, but it is the sweetest thing you've ever heard! Go to Christal's site and order if interested. http://www.christalinfo.com




Thursday night... In Jake's langueage, the response we have had form all of you who are still checking in would be a great big "YEA!!" You are the "best winners". I know it will do Don and Staci so much good, as it did me, to know the support still there for them. I will update later on the Foundation meeting, respond to questions regarding the orders for tees or crosses, and other questions. And for several who mentioned it, YES... we DO read every entry! So thanks. Mo

Hello everyone. Don't think we aren't checking in every single day ourselves. It just takes a while to figure out what to say and how to say it. Our previous journals were all about that cute kid, Jake, and his funny antics. If wasn't being funny, then he was too sick to be, and we were desperately asking for prayers! Now, it is just .... our "normal" lives. I don't think a day goes by that I don't cry. It is always something totally random that brings it on, and never at the same time. I was listening to Chrystal's CD on the way to work the other day, and had to reapply the mascara by the time I got there. Chrystal is a friend who went to Heaven in the fall also. She and her mom put together a CD a month before she died of a brain tumor. The articualtion of her speech is poor, yet her spirit is STRONG!! You can hear her spirit as she belts out "I will enter His gates with thanksgiving in my heart, I will enter His courts with praise. I will say this is the day that the LORD has made, I will rejoice for He has made me glad." I wonder if Chrystal knew that a month later she WOULD be entering the gates of Heaven? I will have to get you a link to Chrystal's site so you can see if there is a way to purchase these CDs. Believe me, it is worth it.

Then, tonight, I swung by Staci and Don's on the way home, and Don said, "Here's your Christmas present." I knew it was coming, but I didn't know when...
The day Jake passed away, Staci and I had a very special time taking impressions of Jakes precious little hands and feet. Todd and Don were in the room with us. He had already passed, and we were all calm and peaceful, and knew this would be the last time to be with him physically and were being reverent and respectful. Well, Staci and Don had the impressions of his thumb made into sterling silver pendants for our gifts. Tonight, I got my necklace with his little thumb on it. Todd's is on a money clip and says, "Peace, Bro" which was their special catch phrase to one another. I just caressed every little line of his thumbprint. Just knowing it was his, and only his... well, here I go crying again! He was such an awesome kid! There will never be another like him!

We were in one of the rooms at my clinic the other day, and I moved some bubbles in a cabinet to reveal Jake's WIggles microphone that we used to belt out "Toot,toot, chugga, chugga...Fruit salad-yummy, yummy...and D-O-R-O-T-H-Y, Dorothy the Dinosaur" to. He did love his WIggles songs! I just quietly shut the cabinet and said, "that was Jake's". My staff is so good about taking care of me. The OT got the bubbles for me so I could avoid the microphone at that moment. Then, there is his train table... I watch other kids play with it, and I am saddened as they "chooooo choooooo" all around it. I rememeber the thrill Jake got as we went under tunnels or over bridges. It makes me a little aggrevated, if I am to be honest.. not angry, just aggrevated. Then, sad all over again!

The pics on the slideshow are of New Year's EVe this year. I suppose nothing says "Deal with grief" like hosting a party! Staci and DOn had about 40 people at their house on Jake's 5th birhtday. Last year, Jake LOVED the Roman Candles, and could actually hold one by himself. So, this year, we had a big salute to him. (I think I have already told you all about this!) Anyway, that explains the pictures. Jessi also found some of Jake's 4th birthday. Most of you know that I have MANY, MANY, MANY pictures of Jake. However, I didn't take many great pictures of Jake on that birthday. I think I was too busy playing, and I just never got around to grabbing my camera. That is ok. It is etched in my memory. I remember Jake kicking some tail on the air hockey table. Does anyone else remember that?

I think I am going to start putting some of Jake's old pics on the slideshow. Stay tuned. Don said it would be ok to do this, so I am going to the archives! I may even try to put some of my journal entries to Jake on the site. It will bring back some memories, and may tell stories that you have heard before, but will be more my letters to Jake. Maybe they can accompany the older photos as an explanation.

Tomorrow night is the first Jake Owen Raborn Foundation meeting! WOOOOO HOOOOO! Staci took Jacobe and his mom to their appointment for chemo again this week. I seriously do not know how she manages that. I can't even look at his tennis shoes! I am sure she has her very private, painful times too. We aren't ones to openly express sadness. (Except, obviously, at work for me!) Anyway, we should get to the business of how the foundation will function, who it will help, and when it will get underway. By the way, I left Staci painting crosses tonight. Only about 150ish to go! That is a lot of "BELIEVE"s. Thank you for your patience. Pray for guidance and wisdom in tomorrow night's meeting.

Don't think we aren't reading this site every single day. It means so, so much to the entire family that you are still reading and praying. Hey, Amy K., Jeannie, Kim C., Linda C., Prayer Bears, Mrs. Fay, Trina and Lance, Sammi, Miss Libby,Denise and many many more. Thanks so, so much. If you are visiting, please sign in in the next couple of days, so we can know you are still there. Just say, "hey there." or "I miss Jake". It doesnt' really have to be profound, just touching to hear from you. I will really try to make an effort to do better on keeping current. Of course, I will give Don and Staci the first chance at it when they have something to say!

Missing my sweet, sweet angel boy!
Mo

Tuesday, January 9, 2007 10:29 PM CST

I guess I will start by saying Sorry for the delay in between updates. Boy what an emotional roller coaster ride we have been on and I am ready to get off!!! I miss Jake more and more each day. I have to say the holidays were just like every other day, hard to swallow. I Just take them one breathe at a time. The hardest was buying a birhtday cake. I sat and pondered, what would he like on his cake. After crying and having a complete melt down in wal-mart, Hunter suggested we get his picture on it. It was PERFECT, although I wouldn't let anyone cut into it. All that commotion and no one even ate it! Baby steps!!!!!

Hunter and Hayden are doing great. They keep me busy, which is just what I need. Hayden has started to play basketball. They won their first game, and if I'm allowed to brag. Hayden did quite well. He scored 10 I think. Hunter is just doing the teenage thing. Talking on the phone, text messaging, movie going, and my spacing it! After all he is almost 13. Speaking of turning another year older, Hayden will be 11 on the 13th of this month. My gosh time sure does fly. Those boys will be full grown if I blink one too many times.

I want to thank you all for continuing to check in on us. We still need your prayers as you can imagine. The foundation is knee deep in the works. The lawyer is working very hard to get this off and rolling. He is the one that must dot the i's and cross the t's. Hopefully by the end of this month we will be fully operating. It won't be a moment too soon. We keep hearing from so many families. It breaks my heart to hear that someone else is faced with the reality of cancer.

By the way, I just got my last shipment of crosses and pendants. We will be able to fulfill everyone's order by the end of the month!! YEAH!!!! Thank you all so much I know it has taken a while,and you have been kind, not to complain.

Please remember to keep our other friends in your prayers as well. ms/brentnason and visit/spencerboyer

Believe,
Staci

Sunday, December 31, 2006 8:36 AM CST

Jake,

HAPPY BIRTHDAY SON! I know that you're having a great day with Nana and all of your friends. I can only imagine how beautiful it is in Heaven.

You're 5 years old today and still touching lives here on Earth. Your legacy grows everyday as your story is being told by thousands and thousands of people. It is so amazing to me and Momma as we read the stories about people "Paying it Forward" in your name. You paid it forward everyday as you fought your illness head on with such courage and spirit. You taught St. Jude so much about your disease that they can help so many more patients as they fight their battle.

Momma and I are moving along with your Foundation. It takes alot of paperwork in the beginning but we should have it going soon. We will continue to tell your story in hopes of raising money and awareness for kids like you. We are so excited about this and you're the reason why.

We miss you more and more everyday. I'm really at a loss for words when I try to describe how I feel so I won't. Just know how much we love you.

Gotta go now. I got to help Momma straigthen up the house. Take a look at us tonight. The whole world will be shooting fireworks for your birthday. Just wish you were here with us.

Believing with all of my heart that I will see you again,
Daddy

Wednesday, December 27, 2006 1:34 PM CST

First and Foremost... Happy Birthday to Nana Raborn! I hope you are nothing but smiles and energy and happiness as you and your baby grandson play your little hearts out together... To all reading, I know there is some degree of comfort knowing that Jake had a Nana he knew, loved, and recognized meet him at the pearly gates! Lots of things you never gave too much thought to before, other than a superficial kind of thought, become consuming to your mind when a baby goes to heaven. Like, is he scared? alone? aging? have hair? recognize people he knew? remember his Nannie that he only knew as a baby? watching us? missing us? and on and on and on...

As Don put it earlier this week, "If I can make it through 'hell week', I will be ok." He has Christmas Eve (Santa!),Christmas Day with family, his mom's birthday, and Jake's birthday, all in one week! UGHHhhhhhh! So let's get on past all that and talk about what SANTA brought!

Don is pretty excited that he has graduated to being invited to Todd's golf games. Todd is pretty serious about his golf!! So, Santa got Don some new golf clubs. He also got a really sweet shadow box from Staci that has the scrub top that he was wearing in the delivery room with Jake. It has his little bitty inked footprints on the chest of it. Staci included a picture of the first time he ever held Jake. (That baby was about as perfect as they come... BE-A-utiful!) There was also a cross that Jake painted when Staci and I were painting one day to get out the orders. He would ALWAYS insist on painting when we did! So glad about that now! The box has room for adding other goodies, like a few of his special toys, some precious pics, and maybe a pair of shoes or such. It is a really cool gift. Speaking of inspiring gifts, Jin got a framed pic of the actual picture we used on Jake's program at his funeral. It was surrounded by purple and gold flowers from his actual floral sprays. The pic is the one of him standing between his big brothers, but zoomed in on him with only his brothers jeans showing. All of their barefeet are entwined, and it is just priceless. I thought Jin was going to get weepy, so we had to revisit the Christmas Day rules, and immediately change to a funny gift. No crying! Jake is happy and we have to do all we can to make him proud of our attitudes and to give his brothers happy days forward.

Jin was brought into the century with an IPOD... rock it out, Jin. Masie (Bonnie's oldest)got a cool new digital camera that she is pumped about as she goes around saying, "My camera is nicer than my mom's"... that is what you get when your aunt and uncle hit a jackpot! Just kidding. Staci bought me a mannequin. Strange, I know, but I saw one as a display in a window and commented on how cool it would be to have it for my jewelry and such. She called back later, and the lady was able to order her one for me. It is so cool. Todd got a new vacuum which he has already sold to Staci and Don (I tried, but he is just hard to buy for!)and a waffle maker, that he is giving to Jin. Poor Todd... Anyway,Jin, who told us yet again, "This Christmas is not going to be as big as usual", (YEah, riiiiiiight)went nuts once again. Wait until you see the pics... just waiting on Jessi to get back to work to put the pics on the site. One of the funniest moments was when Don unwrapped the breath mints, Yip Yaps, and stopped just short of eating them... they were in his stocking, but were for Daisy, the DOG! Man, that would have been a hoot.

The boys had a good Christmas, and both got new TVs for their bedrooms. They got guitars, (and are supposed to start lessons soon), knives (one trip to the ER isn't enough, I suppose), and hunting gear. Lots more, but I don't really have a list in front of me, so I am going off memory.

Staci got front row tickets for THE MAN... George Strait. Woo hoo for George. She LOVES her new Pandora bracelet that is like a slide bracelet, where all the beads chosen are "meaningful". Don got her an angel bead, a "J" bead, a shamrock bead, and a cross bead. She also got a couple of other bracelets and is looking a little like Emma Grace!

Staci needed some help wrapping on Christmas Eve. She started around 10:30pm, (just about the time everyone was leaving my house and I took an Ambien!), and Todd thought we should go down and help her. Well, if you have ever taken an Ambien, you know that I was USELESS! I went and climbed in the bed with Hayden. Don couldn't help, because he was delivering things to Jin all night... like tape! She, too, was up til 5:00am wrapping. Psychos!

Christmas Day, Staci and Don called bright and early, after delivering the boys to their dad and invited us to eat with them at Waffle House. Yes, Waffle House! We went in feeling like big ol' losers, but left with a warm, fuzzy feeling. We really felt empathy for those who had to work on Christmas Day and were able to jointly leave a big tip for our waitress (like you, Gina!!), with a Pay It Forward card. We also bought the meal of a mom, dad, and daughter who were sitting in the booth next to us. It was nice to give out Jake's story on Christmas Day!

Christmas was different, but the reason we celebrate certainly didn't change. Christmas last year found the whole family in church together (very rare), with Jake homehome and off chemo for a while. Hunter got baptized that day. I can vividly remember Jake sitting in his dad's lap in the pew. So, seeing the family of four on Christmas Eve was hard for me! I really had to just apologize to God for not being able to pray that day. I thanked him for his son, thanked him for our family and for all of us being there that day, then told Him that I knew he knew my heart! If I had prayed much more than that, I would've been crying and snorting and snotting, and it just wouldn't have been pretty at all!

We have some sweet friends in need of prayers...
www.caringbridge.org/ms/brentnason (read for great inspiration!)
www.caringbridge.org/visit/matty (fellow hepato kid)
www.caringbridge.org/visit/spencerboyer
www.caringbridge.org/visit/princessmia another hepato friend who has recently been referred to hospice


I will give you pics as soon as I can get them in Jessi's hands...

Getting ready for the SUGAR BOWL... Geaux, Tigers (Ain't that right, Spencer?!)

Mo

Saturday, December 23, 2006 7:50 AM CST

Sometimes the lags between updates mean not much to say, and sometimes it means don't know how to say it! Well, I can speak only for myself, as I am sure everyone is struggling in their own ways, but I find just trying to not talk about it helps me. If I bring up Jake's name, tears usually follow if there is any discussion agound it. I can quickly utter, "Jake would've liked that." But, there can't be any discussion per se. In fact, jus tthis little bit I have typed has brought on the tears! Christmas shopping has been hard. There are things we see that we would have just, without a doubt, gotten Jake for Christmas... a Lightnin' McQueen chair, an LSU hoodie, Dora checkers... I cry a lot in Wal Mart. I think Staci would concur! Her first big breakdown came there. She called her "counselor", (and our good friend), CIndy, who talked her to checkout.

Many of you have talked about your BELIEVE stuff. Well, you can only imagine mine and Staci and Jin's houses. I haven't been out to Bonnie's or Marina's, but I imagine it is more of hte same. We have whole sections of the house dedicated to only Believe stuff. Thanks so much to all the people who have sent us goodies. I LOVE every one of them. Staci has a special section too. She finally got around to decorating a special tree in Jake's room, full of M&M ornaments and M&M garland. Jake's special "Build a Bear", "Wiggles" is flying the big red plane she brought to hang with his tree. She never really got around to decorating her own tree. There are big lights, and about 5 ornaments, really only the ones she collected this year. Todd tries to be funny and will plug their tree in when we go there!

The boys still seem to be doing ok. They don't talk a lot about missing Jake. I have to ask them about a particular memory from time to time. Still not much response from them... Hayden is really, really quiet about it all. I think a little prayer could be useful in this area.

Speaking of prayer, we have been keeping up with several of our friends... www.caringbridge.org/ms/brentnason is really struggling. He is being a tower of strength, but boy does his situation bring back a lot of memories. Then, there is another friend of ours, /visit/matty who has hepatoblastoma and is just so happy to have each other through Christmas. On his site, there is a conneciton to princessmia, another hepatoblastoma kid who is going to a hospice due to newfound tumor in her brain... just like our little Jake. Also, we have a good friend, spencer, from LA, who recentlyl relapsed with ALL and had to go through a seriously TOUGH protocol of chemo that is YUCKY to get him ready for a bone marrow transplant. Please follow their story too... /visit/spencerboyer

Staci and I had pencil drawings made of Jake at two different times in his life. People have commented on how neat it is that one of us picked Jake so young and the other chose him older and more like he was when he went to Heaven. Well, it is kinda interesting, because mine is probably July of 05 and Staci's is January 06. Only about 6 months apart, but he looked so different. Staci said as you pass down her hall, it looks like she has LOTS Of kids! Because, when we remember Jake, we tend to speak of him like, "during brain tumor," or "when he had the NG tube." Or there may be "when he had hair", "during the heavy steroids", "right after being on the vent", or "Just before bone marrow transplant." Strange, isn't it?! That poor baby sure did go through a lot in his little life.

We also wanted everyone to know that Dawn RUshing, a faithful BELIEVER, lost her mom this week. I know they would be grateful for prayer as they, too, face Christmas without the matriarch. If you haven't been there, you haven't experienced the VOID that hangs around when one of your loved ones is missing during the holidays. We will just take it one by one.

Thank you all for your continued support. I wish I had Jessi here at home with me, because I wanted to put some pictures of Jake and brothers at Christmases past on the site. I need some computer skill lessons... any volunteers?

With a heavy heart,
MO

Thursday, December 14, 2006 9:57 PM CST

In one of the pictures on the new slideshow, I mention the inspirational "mileage message" that I tried to get to every runner the morning of the race. I know I missed many of you, so here is a chance to read what I had intended to inspire you at every mile. Jin, Staci, Veronicia, both the big boys and their friends all stayed up til the wee hours of the morning, cutting these into little strips, hoping to make them more maneuverable during the race. Some of the runners are including these in their "thank yous" to those who donated money to their cause. Feel free to copy and do the same.

Just wanting everyone to remember that sweet boy.

I MISS JAKE,
Mo



Mile 1: Be thankful for St. Jude. Thankful for all the children whose lives have been saved and all the kids whose brave fight has shown the doctors new directions in treatment for kids to come. Jake was a pioneer. The second in the world to have a bone marrow transplant to try and cure hepatoblastoma. His parents had some very difficult decisions to make along the way. Be so very glad that your children are healthy and you do not have to make such decisions.

Mile 2: Thankful for generous and giving people. Meditate on the vast number of people who are here around you running in honor of kids. Take note of the many, many people who are running in memory of their own kids or kids who have impacted their lives in some way, the way Jake did all of ours. Emma Grace, Shae, Stanton, Hannah and Chrystal all have families who have formed teams in memory of their kids. None of these kids ever saw 7 years old. 5 of the them never saw kindergarten! But… we will survive… and we WILL see them again. Thank you on behalf of all of their families for training and raising money for St. Jude.

Mile 3: Pray for strength for Jake’s family. Especially as we enter this Holiday season! This is also the first trip to Memphis without Jake. Pray for the Jake Owen Raborn Foundation, and that it is used to bring glory to God and sweet memories of our precious Jake. Pray his legacy continues and his life (and ours) continues to be a testimony… that we can see the “what” and not the “why” of Jake’s short life.

Mile 4: Remember Jake’s chemo treatments. If you are tired and dragging, remember how many times we had to hold a cup for Jake. How Staci had to pull over when on the road to let Jake throw up…. And how like a champ, he would say, “I’m through”, then continue with a smile. I remember specifically this happening at Sea World on his Make a Wish trip. Staci grabbed a cup from the top of a nearby trashcan, because it was an emergency. Jake did his deal, wiped his little mouth, and we all headed to the sea lions…. Jake with a smile!

Mile 5: Remember Jake’s “buddies”, the central lines that hung out of his chest for over two years. The very ones that Jake could “flush” daily with heparin and saline all by himself. The many, many hours spent carrying around a bag of fluids or medicine that was connected to Jake and sometimes tried to get it the way of his play. He knew the boundaries of the cord better than we did. He was such a cool kid! He gave his best friend, Emma Lou, a doll with buddies for Christmas too. They played “St. Jude” all the time. (Jake’s doll’s name was “Coach”.)

Mile 6: Be thankful for your legs. Meditate on Jake’s inability to walk. He was only 2 ½ years old when he lost the ability to walk. He spent the next year being carried. When he learned to walk again at 3 ½ , he was only able to do so for about 11 months before returning to the ventilator and never walking again. I can NEVER remember him complaining about this. Jake had a way of just going with the flow. He took life as it was dealt to him. Thank God you can walk.

Mile 7: Be glad you can hear. Chemo is a horrible option, but the ONLY option for many cancers. Parents go into it knowing that it will permanently damage their children’s ears. The kids wear hearing aids and are speech impaired for the rest of their lives due to this. Little Jake had lost much of his hearing! He had to wear earphones to hear the TV in the car. We loved it, because we could hear him singing and laughing louder than if he didn’t have them on . Be thankful for your ears, thankful that you can hear the people around you running, talking, and even the cold wind whipping by your ears.




Mile 8: Be thankful that you can eat Be glad the Lord gave you an appetite and that you can enjoy food. Jake only ate very few months of his life after the cancer diagnosis. His parents carried a bag of “food” around 24/7 to feed him. Kids on chemo have an altered sense of taste and most things are awful. If they do eat, often it is coming back up! We are thankful that Jake was eating his last days. M&M’s will always be special to us, because he could still pick them up with his little fingers two days before he died. Oh, and did I mention his wanting a hotdog from Sonic only two days before that?!

Mile 9: Remember why you believe. If any parent can go through this, and still be “happy” and face the world day to day, then I think that is a pretty strong testimony in itself. They are just trying to keep putting one foot in front of the other and breathe the next breath day after day. They are persevering, in many cases, for the sake of their other children. Life is precious, and they know just HOW precious. Many parents of kids who didn’t live into their teen years are here today. They are cheering you on. They are on the sidelines. They BELIEVE in a future of HOPE. They BELIEVE in St. Jude. They BELIEVE in their children. Jake’s life had purpose. Does yours?

Mile 10: As you are feeling tired, remember that you are not carrying your sick child. Staci and Don had to carry Jake for almost two years. He was a heavy little toot. When they felt they could not carry him any longer, they DID! Jake had a happy life. His parents and family made sure of it. Keep going. You CAN DO IT!

Mile 11: Be thankful for the wonder of children. Jake’s little friends talk about him openly and honestly. They understand that Jake is in heaven. They ask questions about Heaven. They know it is a happy and loving place. They are not scared of Heaven…. All of this because of a little boy named Jake.

Mile 12: You are almost there! See the finish line! Thankfully, Jake could see the whole 2 ½ years. Many kids lose their sight due to tumors. I know of a kid who had hepatoblastoma who wen tblind in his final stages. Jake could have suffered this way, but Praise God, he did not. He kept his visiton. He could constantly see the love in his mom and dad’s face. He laughed even until the day he went “to sleep” at his brothers as he watched them act silly and even wrestle each other. Take it all in… SEE the love. SEE the parents on the sidelines. SEE GOD!

Mile 13: Victory! For many of you at the end of your race. You did it! You ran the race before you. You succeeded. You pushed yourselves to do something you thought may be unattainable. I am grateful. Jake is here! He runs across the finish line with you. Thank you for honoring Jake! Let the memory of Jake pour into you. Think about his smile. Think about his being at the beach with his brothers. Think about his going to sleep between his mom and dad. Think about his hand up their sleeves. Think about the meds he no longer has to take and the buddies he no longer has to flush, clean and dress. Remember his last fun day on the boat with his mom, Mo and brothers. And remember, that Jake is in HEAVEN…. Smiling down on all of us proudly!!

Mile 14: You are just beginning on a very inspirational journey. You are facing uphills, downhills, and I pray the wind is at your BACK! There were times with Jake when his AFP would drop to just at normal, and we would just KNOW that he was healed… then BAM! It was back. And BAM, he was back on a ventilator. There were times that it seemed like smooth sailing and times that you think, how can he take anymore? But, he DID take more, and because of that, we got to make more memories. He demonstrated strength, perseverance, and refused to quit. You are making a fantastic memory today. Let Jake help you.


Mile 15: If you are finding it tough, remember prayer works. I specifically recall an all night prayer vigil when Jake’s kidneys needed to start working to avoid being on a dialysis machine. The docs gave us very little hope of his surviving. After people on the net signed up to pray at all hours of the night and day, he DID survive and lived to encourage people for another four months. So, PRAY. Pray for endurance. Pray for forgiveness. Pray for strength. Pray for peace. Pray for making it to that finish line… you AND your teammates!

Mile 16: Starting to get uncomfortable? Think about the days and nights spent cramped up on a couch in a waiting room. Jake would fall asleep in a particular position, usually across his mom or dad’s arms, and as their arms ached with pain and tingled with “numbness”, they persevered, determined to keep him comfortable, and allow him to continue sleeping. Do you recall Staci climbing into the CRIB with Jake after his brain surgery because the docs didn’t think he needed a “big boy bed”. THAT is discomfort! You can make it.

Mile 17: Pray this mile for Jake’s brothers. They were so “grown up” during the two years with their mom absence. They rarely talk about Jake now, and as Hunter says, “I don’t like to talk about it.” They are holding lots of big emotions in little bodies. They both did the 5K today in his honor. They were planning to cross the finish line with Uncle Eddie, Uncle Todd, and Jake’s cousins, Madison and Jordan. Just a “typical” family who went through very ATYPICAL circumstances!! Pray for Hunter and Hayden, the warriors, and the other siblings who are facing this right now.

Mile 18: Don’t forget that you are going HOME after this. You have a lot to be thankful for. There are people standing on the side of the road who are St. Jude families who are headed right back to their hospital rooms when this is over. There is also Carmen, our friend, who is in ICU and not even able to see the light of day. Be so grateful that you have a home and that you get to go to it when this is over. There were stretches of months when Staci and Jake were not allowed out of Memphis. Then again, there were months, they weren’t allowed out of ICU! So, keep running… you can go home soon!

Mile 19: Do you realize how far you’ve come? I think about how hard Jake fought. I remember his last days. I will never forget the description the nurses gave… “pain crisis”. They got it quickly under control, but I can only imagine how much Jake wanted to stay awake and be with us. He was a soldier! He fought through pain often… needle sticks in his little arms, and having to be brave as he saw it coming! He would have searing nerve pain in his feet from the chemo. We spent many a night rubbing his feet to help him go to sleep. Think about Jake’s perfect little feet while you are running. The angels’ wings now rub them!

Mile 20: 20 miles, can you believe it? Focus on your breath. You are so blessed to have healthy lungs that breathe in and out and have good oxygen exchange! I remember watching those monitors like a hawk when Jake was in ICU. He had fungus growing all over them. He had lived, at age 2, with cancer all in them. Jake KNEW what it was like to not be able to breathe. I vividly recall the decision to put him on the vent with the fungus, as he was working very hard to get his breath out. You could hear him grunting across the room. Your lungs are healthy. Praise the LORD! Jake is going to help you breathe…. Keep putting one foot in front of the other.







Mile 21: You are getting really close to St. Jude. There are children in the hospital right now because last night they got a fever, and their blood counts are low. Just a stinking fever, and no more hopes of homehome or playing outside, or even leaving the room. It also means labs and needle sticks, and cultures, and lots and lots of anxiety on the parts of the families. Be so very thankful for your immune system. It lets us be out in the world… running! It keeps you well. Focus on your strong immunity. Focus on being well. Recognize that your B and T cells are perfect… not malformed or causing leukemia! Praise the LORD.

Mile 22: Do you know how close they are to curing leukemia totally? And do you know that St. Jude has really committed to spending extra monies to finding a cure for neuroblastoma? Two of Jake’s best friends at St. Jude died of this nasty cancer. The money you raised will put St. Jude closer to curing pediatric cancers. Thank you. Your monies will be well spent. Hopefully, we will not have to know about a single other kid with cancer. Focus on St. Jude curing cancer. Meditate on how you will be a part of this cure in the future. Will you be back here next year? You can do it! You are nearing the research center. That is where they are learning right now.

Mile 23: I can’t wait… you are almost to us. We will see you in about 6-10 minutes! We’re waiting at the gates of St. Jude. Jake’s mom and brothers will be there. We KNOW you can do it. Come to us. Keep putting one foot in front of the other. Staci is being very brave to be in Memphis without her baby. She seems to totally understand that her son that Jake bravely and perfectly did his job. Pray for Staci and Don as they shop for Christmas for the two big boys. Already there are things everywhere that there is no doubt that Jake would have gotten for Christmas. It is heartbreaking to see. Staci has bought things for him, feeling crazy for doing so, but needing to do it. Remember Don as he has to work today. He has no more time off this year. He spent it all on Jake. He would have had it no other way. Praise the LORD for Staci and Don being able to put one foot in front of the other every day…just like you.

Mile 24: You should be at St. Jude. There are so many kids in there… all bald, many hurting from the chemo that makes their joints ache. Some of them are having horrible side effects that make their stomachs hurt or keep them nauseated. They are facing another year of the same in many cases. They can watch movies or maybe color, but usually are stranded to the bed. Some feel to bad to even look at the TV. I remember Jake being so apathetic at times, that he would just lie in the bed and look at the door. He just felt too bad to care. He once stayed in a room for almost 8 weeks. The pictures of him going into the hall in his little wagon in his Superman suit is priceless. Pray for all those kids still in their battle. Please focus on Brent (13ish and the oldest of three boys) and Carmen(9ish and a fellow Louisianian who has been in ICU for weeks).

Mile 25: This is a hard one, but you can do it. Remember Acts 20:24 on the back of your shirt. You are a testimony. You are testifying that you will run the race set before you… metaphorically your life as a Christian and actually as you race toward that finish line. I LOVE that the scripture is written in a child’s handwritten font, because it is as if Jake was telling us all… “I am ok. I ran my race. I achieved my goal. I completed the task that the Lord Jesus set for me. I am now expecting the same of you.” Are you going to do it? Today? Tomorrow?

Mile 26: You made it. You should be so, so proud. We are proud of you. Jake is proud of you. He is running this last mile with you. You are headed up the hill, but there will be people to greet you there. Keep it up. Push it. You made it! Let Jake’s spirit escort you into the stadium. Recognize him with you. Feel the pride he has for you. Jake’s family is overwhelmed with gratefulness. Thank you.

Tuesday night 6:50pm

This is correspondence between Jodi Johnson and me. I was really wanting to know the story behind her running with the 50 balloons. I didn't think it had been planned. And sure enough, lots of little God Winks let that happen too! SO, I thought I would share it with you. Don't forget to check on Brent and Carmen. See websites below...

From Jodi:
You're funny! I can't tell you how HAPPY I am for you all!!

Okay....yeah the balloons....well.....

We hit just a couple of snags that morning. We learned NOT to tie the pay it forward cards on before passing the balloons out. They got a little tangled which made it difficult to hand them out. Then they cut off the front access to the Heroes lounge where all the balloons were, so we couldn't get the rest of them in time. After we released the balloons, I wanted to go back up and try to get as many as I possibly could so that I could give them to you and Staci to pass out to Team Jake supporters, I started toward the marathon start line with about 60 balloons in tow thinking that if I didn't see you all on the way, certainly I'd see you at the start. As I ran into Team Jake members I gave them a balloon and that left me with about 50. Still looking for you all, I began to shift my focus. I decided not to run and instead just look for you all. ( which at the time I thought..."I'm so glad I'm not running now because there's only 5 minutes until the race starts, I have 200 pay it forward cards in my jacket and most of all - I HAVE TO go to the bathroom! :) ) Then I began to worry a little - no signs of any Raborns anywhere. A Team Jake member mentioned to me that you all planned on being at the 2 or 3 mile marker. Hmmmm - great, but where the heck is that?

This is where it gets good! I thought to myself, "okay, I can start the race with everyone, hold on to the balloons and when I get to the 2 or 3 mile marker, I'll hand them off to Staci and Melanie. This is about the point where the race started and I had no chance to rethink my plan. So I was off. I quickly assessed that walking was not going to get it. That would take too long to get to you all, so I tried jogging. Not so bad. Then things started getting interesting. Almost every 5 seconds it seemed that people were coming up to me saying "GO TEAM JAKE!" I noticed people slowing down to take a good look at Jake's sweet face on the balloons. Some people were running with their friends and would say, "Hey look - that's Jake. Jake was a patient at St. Jude.... - they would continue to tell their friend Jake's story. Some people asked me why I was carrying the balloons. (I guess they thought I must have had a really good reason because it did seem a little crazy to be carrying 50 balloons while running) I was able to tell them about Jake.

As I approached mile 2, I started to look for everybody. Still no Staci. No Mo! Then we ran back by AutoZone park. There were people EVERYWHERE and all I could hear were people yelling "GO TEAM JAKE!" Somewhere along the way I had forgotten how badly I had to go to the bathroom. I didn't care that I had 200 cards in my jacket. And I didn't care that I was carrying 50 balloons. I asked myself, "Can I carry these balloons all the way to the finish line and release them? If so, I think I can share Jake's story with many people along the way and those who I don't talk to, maybe they will notice Jake's sweet smile on these balloons and wonder who he is. If I can run into AutoZone park with them, then maybe people will take notice and wonder what Team Jake is all about. And so I was off - to complete my half marathon...with 50 balloons. HA!

I had the best time EVER! One lady stopped running to walk beside me just to hear Jake's story. Once we were finished, she started running again. I FINALLY ( after 2 and a half hours) made it to AutoZone Park. I could hear people again all around yelling, "Go Team Jake". I Crossed the finish line and let the balloons go. I've done my share of marathons and half marathons, but this one was the BEST! I watched the balloons. ( I was afraid that after 2 1/2 hours in the cold they wouldn't fly up very well) Once I let them go, they quickly left my hand and flew straight up without hesitation.

Just two little side notes: 1) the longest run I did while training was 1 hour. I was unable to run over one hour because of stomach cramps. These started after I had my little girl in March. As I ran Saturday, I asked God to keep those cramps at bay. I had NO stomach issues whatsoever. ( until after the race that is - I looked for you all, couldn't find you and then I had to go home! :) ) 2) I was concerned about how we were going to get all the balloons blown up. At the last minute I was given some money with no explanation - it covered almost the exact cost of getting the balloons blown up.

It was an absolute pleasure to be a part of Team Jake 2006. Can't wait 'till next year. Who knows....maybe I'll put a challenge our there...for every $100 that people give me, I'll carry one balloon to the finish line! HA!

Jodi

PS - tell Todd I said, "good comeback! The comment "For the superfit, we run backwards" was excellent!



--------------------------------------------------------------------------------

From: Melanie [mailto:mgroves@jam.rr.com]
Sent: Mon 12/11/2006 10:58 PM
To: Jodi Johnson
Subject: RE: pictures of st jude marathon


Jodi, you still haven’t told me WHY you ended up running with those balloons. The suspense is killing me. Oh, and by the way, if they need $500 next year to blow up the balloons, I think we have it covered. There are some perks to being a multi-millionaire, I suppose!! Ha. Thanks again for ALL the work you did. I will have to get you some pics from the race. I will talk to Jessi about it tomorrow. Melanie



I am coming on tonight to ask for prayers for our good buddy, Brent Nason. His mom wrote a very inspiring update on his site, www.caringbridge.org/ms/brentnason, so please feel free to go there and offer your support. We KNOW how it feels to be so desperate for a healing. I kinda relived the desperation while reading her site. You are willing to accept whatever the LORD sends and desires, but you REFUSE To give up on the possibility of a healing. That is what we are asking for for Brent.

Also, some of you may have seen the picture of Staci looking through the gate at the marathon with Carmen's mom, Paula. Well, Carmen went to be with Jesus Saturday night. Please offer them condolences and prayer at www.caringbridge.org/visit/carmenwhite
She was a precious little girl who fought valiantly!


Better look hard at those marathon pics, because we will be changing them in the next couple of days. I am so tired of hearing Monica and Renee cry about not having their pics on the web site, that I may put nothing but htem on ! I have a GOOD one of Renee with a towel on her head and in her pajama pants. SO you want your picture on, hum Renee?!

Good night at Art night tonight. Staci made it too. Boy are we making some cool stuff for Christmas presents!! You'd have to see them to believe them!! MoMo


Saturday morning:
Uncle Todd here…..I am still in disbelief over what happened on Wednesday night. Just because of the circumstances that this family has been through. Jake is thought of and talked about all the time. It would be awesome to see him open those Christmas gifts or just here him say “It wasn’t me!” after he hits on you the shoulder or kicks you on the leg. The humor of that boy was like no other. Everyone that follows this website knows what Don and Staci have gone through for the 2 ½ years. Not all of it was sad but some of the times I can’t even explain how tough it would be on two people. Even the times when I was there my thoughts would be “I don’t know how they do it.” You have to be strong for you children and I can’t think of a better set of parents that can take on that challenge.

Some of the things presented in the news-paper were taken out of context. However just to clear up one matter, Staci never said anything about it being her Angel that sent this to her. She DOES say that she feels Jake is with her on a daily basis. And what mom wouldn’t want to imagine their child as an angel, although not necessarily the kind with wings? Trust me, we have had many discussions since Wednesday night. The prevailing message from Staci has been “is it odd or is it GOD?”, just as she has said many times before, following in the foot steps of her dear friend, Trish Hampton. This is significant because Staci recognizes that all things are preordained. For instance, think about the reason why she was is Shreveport. To buy Christmas cards that Jake designed. When deciding to stop by the boat for dinner, what made her stop at that particular machine? She could have given her credit to lady luck but she didn’t because she chose to credit God. The media is responsible for crediting an angel. However we believe that Jake is definitely happy and whole in Heaven. And why in the world would we not think that he could not persuade something like this to happen? We have seen so many people support Don and Staci since this happened. We all know what this money will mean for helping other families going through similar, horrible, circumstances. Just so you know, the foundation is in its infancy stage. Basically it is not up and running yet and probably will not be ready until 2007. But they have had a meeting with attorneys and CPA’s so it will all be done correctly. All money donated is being held in the foundation account awaiting the day that they can move it to the actual foundation. This is how Staci was able to help Jacobe’s Mom get him to treatment in Shreveport recently.

Now, to Holly Hart….For the super fit we run the race backwards. HaHa! My lightening fast speed did not allow Melanie to catch me before it was too late to take a picture so se told me to turn around. This takes some serious talent.

Cheryl Leachman…You rock! You being my cheerleader for the 5k was very awesome. If you do not run next year I got dibs on you. And to all the cheerleaders out there it does matter. She had signs out on the race route just for me. They were pictures of Jake and I with sayings like…”If you don’t run, I will get you with my gun!” The picture was Jake pointing a plastic gun while sitting in my lap. I heard so many people say “Hey you are Todd, the ones on the signs out there. That was so cool.” The donations made to Team Jake were incredible. Thanks to all that donated under my name and the other St. Jude Heroes. All the runners said that they were overwhelmed by the presence that Team Jake had at the race. This gave them a little extra boost toward that finish line. Thanks to all that participated and hopefully we can grow this bigger every year. We happen to know some millionaires that might could cater a Team Jake 2007 planning meeting. Ha!

Stay tuned……
Uncle Todd

Thursday update AGAAAAIIINNNN!

Well, here we go again. If you were lucky enough to read the first update, you may have gotten a more thorough report! However, it was somehow lost, so here we go again!

Yessss.... the rumors are true, and here is the story.
Remember yesterday's update about Staci and Don going to Shreveport to get teh boys' Christmas cards? Well, the trip took another turn entirely. After having dinner, Staci and Don decided to go to dinner, then said, what the heck, let's go by the casino, because the big boys (Hunter 12 and Hayden 10 ... per someone's request!) were staying with their dad for the night. ANnnnnyyyywwwwaaayy... they had planned to play slot machines for a little while, then head home. Staci asked Don which of two dollar slots she should sit at. Don had no strong opinion, so she said, "Fine, this one will do." It was a progressive jackpot type, so she had to put an additional $2 in to qualify for the "big money". And speaking of "big money", big to the tune of $4.4 million!! Did you hear me? $4.4 million!! Can you say life-changing? Well, when Todd came upstairs last night to tell me that Don was on the phone and was saying Staci had won millions, my response was "shut up... you know he is lying!" I finally got on the phone and could tell by Don's voice which was excited but also kind of teary that he was being serious! So, Todd and I (and Johnnye Ford) hit the highway to join the excitement. As Staci paraded around the casino carrying her huge cardboard check (not by her choosing, but protocol for the many photo ops required), I passed out Jake Pay-It- Forward cards to all the bystanders. (always the one to be prepared) I had the wonderful opportunity, again, to tell Jake's story..his life and the impact he continues to have. This week has just had Jake all over it. Starting the week with the marathon and the amazing inspiration from it, the Sara Pay it Forward story which had JAKE stamped all over it with the 10.56, and now the "here you go, Mom" with the windfall. He again stamped the good deed by sending his mom and dad to a suite on a secured floor... SUITE 11!! And for added measure, Todd and I also stayed on the 22nd floor, in guess which room.... 11!! Thank you, Jake. We KNOW and BELIEVE without a doubt that you were watching and playing and saying, "Hey watch this you guys. I am about to shower my mom with a thank you of grand proportions." I believe that this is Jake's way of thanking his mom for never leaving his side for the past two years and for taking such extraordinary care of him the entire time.

The first words, other than convincing me he wasn't lying, out of Don's mouth were, "That foundation is about to get kicking." Isn't it totally amazing that when they have decided to do big and meaningful things in the name of Jake and for kids with cancer, a windfall of money falls into their laps. Now, for the stewardship to show up. Don and Staci have lots of good ideas of ways to best use the money. They are assembling their board of directors (11, of course) and will start planning in January, as soon as the paperwork is complete. For now, any donations (because I have been asked) need to go to the Jake Owen Raborn Medical Fund. I think this is where they were planning to get some start-up money to get the project off the ground.

Now, if this ain't an Oprah warm fuzzy story, I don't know what is!! Thank you for all your support. There is something so, so comforting about feeling the excitement in the air as Jake shows off and stamps his deeds with a "signature". Thank you, Jesus, for letting us "see" Jake. Thank you, Jesus, for these blessings. Thank you, Jesus, for all the good that has and will continue to come out of the life of one Jake Owen Raborn!!

MO

Wednesday update:
Staci just called me from Shreveport, LA where she and Don had to drive to get Christmas cards printed from Target. We have a Target in West Monroe, but it doesn't have a full service photo center! Anyway, they stopped at Posada's to eat (we LOVE that, don't we Kim C.?). When they were finished, the waitress brought them a note that read, "God bless your family. Just 'Paying it Forward'. from Believers". HOW COOL IS THAT? Staci and Don, in turn, left a nice little tippy-poo for their waitress with a Jake Pay it Forward card. Hey, everybody... keep this train going! It is so cool to know the impact Jake is STILL having on our world. Hallie, I so appreciate your honesty in saying that you usually quit reading sites after the child passes away. Because of this honesty, I know you MEAN it when you say that Jake's spirit and legacy are still alive and well. It is also encouragement for those of us who are determined that this precious boy will NOT be forgotten.

I came in on Staci trying to get two UNCOOPERATIVE preteens to take Christmas card pics last night. I am so proud of her determination to make Christmas go on. After about 100 shots, I said, "Fine, if they won't cooperate, you should just send one of these out." There are pics of headlocks, tongues sticking out, fingers pointing in each other faces, and thank God, there were no microphones! There is a big ol' picture of Jake between them, and I can remember one of our last outings with all 3 boys, when the 2 big boys were fighting in the very back of the car. Jake was belly laughing, and one of my all time favorite pics of him is him with his eyes closed and grinning ear to ear as he watched them wrestle each other. I know he was right there with them last night, refusing to intervene, just so he could laugh at them and tell everyobody in heaven, "Those are MY big brothers!!"

If you haven't gotten a chance to read Sara's pay it forward, scroll down the guestbook and find it... it is worth the work! She is from British COlumbia, Canada. Her story is awesome! It makes me remember a snowy, yucky day in Memphis that Staci was in town. She saw a man broke down in his car in the middle of the intersection and people stadily whizzing by him on all sides. She pulled off the road, and helped him push his car to the closest garage. When I read Sara's story, I thought Jake was DEFINITELY all over that one. I KNOW without a doubt that the 10.56 (read the story!!) was no fluke. It was Jake saying, I am going to help you because this is how my mom helps people too. Sara, Jake was definitely with you!

More really cool stories about the weekend coming soon! Also, tell all your friends about the slideshow, because we will be changing it by week's end.

OM (dyslexic Mo)


How in the world can I possibly begin to describe the feelings of this past weekend? All I can think is that our little Jake had to be smiling really, really big from heaven!! If there is anything at all that I could’ve hoped for it would have been that Jake is remembered and loved even though he may not be physically present. His spirit was certainly there. I guess I will just try and start from the beginning….

Most everyone headed out Friday morning from West Monroe. A few went Thursday too. Todd and I were lucky enough to only have to keep up with JinJin. Staci and her best bud, Veronicia, had a carload of boys. Both the big boys took a friend with them. Hunter took Keelan, and Hayden took Nick. Anyway, this was the first trip to Memphis since going north with Jake, so it was definitely bittersweet. We stopped every 30 miles or so due to sporadic bathroom needs! We had our windows painted with “St. Jude Marathon”. We love you, Jake”. “Believe”. “Remembering Jake”. “Running to remember Jake”…… and things of the such. It was so cool when we would pass other TEAM JAKErs who would hold their TEAM JAKE shirts up to let us know they were on our team. Everything was going along smoothly until we needed gas and took the exit at Senatobia. We pulled into the gas station, and Staci calmly wheeled around, rolled down the window and shook her head “no”. We said, “Then , lead the way.” She went across the street and took care of business. It seems that she and Jake often stopped at that particular gas station on their trips back home. Sooooo, we knew that some things were going to be touchy, and sure enough, there were memories all over the place. Oh, and how can I forget the “moonings” I got from the preteens? Nothing like a big ol’ booty hanging out the window to totally gross you out, huh?

When we got to the Convention Center to get the boys and Uncle Todd all signed up for the race, we started seeing purple and gold everywhere. And may I say the bright gold shirts were AWESOME, (Dawn!!) because they were so easy to see. We went as a group down to the pasta dinner, and there were some St. Jude signs out in the lobby indicating top fundraisers, individually and as a team. TEAM JAKE was #1 as far as a team goes! Way to go, team and believers! Thank you all for your contributions. I think I can speak for all of Jake’s family when I say we just want pediatric cancer to be wiped out, totally! We don’t want to lose ANY more children to cancer. The monies raised will go straight to St. Jude, and they are committed to seeing cures. The keynote speaker at the dinner was a little girl named Kaitlyn, who was a brain tumor survivor. She was in a coma for 18 MONTHS!! One night, like every night for months prior, her mom got ready to leave the hospital, and said, “Kaitlyn, I love you.” Kaitlyn said, “I love you too”, and that was her awakening! How wild is that? She was so humorous and inspiring. I hate that any of you had to miss her speech. She was witty and just made so much fun of all she had been through, although in an uplifting way. I thought she was the perfect person to speak at the dinner. She also walked the 5K, because she intends to raise back the 3 million dollars it took to cure her and give it back to St. Jude. Pretty good mission for a teenager, isn’t it? The emcee of the evening said he just felt compelled to mention a couple of teams that really touched his heart. Both of the teams began organizing earlier this year in honor of a kid. Now, they are both teams that are running rather in memory of that same kid. Of course, one of those teams was TEAM JAKE. The other was Kelsey’s Krusaders. Kelsey was 7, and died of a brain tumor only a few months ago. Staci had the opportunity to meet Kelsey’s mom. Our team took over an entire section of the room. We had like, 11 or so tables. It was just so neat to be a part of. At the end of the evening, we were asked to come onstage and have a picture made as a group. Hopefully, Lori Beth will be getting me one of those. Lori Beth was one of our runners who has followed Jake on the website and came from Auburn, Alabama to run in Jake’s memory. Her husband was usually somewhere nearby clicking pics, so we should have so many good ones. Lori Beth, email me a file so I can compile a disc full!!

Everyone went on back to their respective rooms to rest up for an early morning on Saturday! At 7:15am, we met at the Auto Zone park for our team pic and to have our balloon launch. Jodi Johnson, an employee of St. Jude, has followed Jake, and just fell in love with that precious boy. She went above and beyond organizing the balloon launch virtually by herself. Karl led a touching prayer about why we were all there and we sent about 400 balloons to heaven. One of our runners, Luke Scott, even dressed up as an M&M for the team pic! Oh, did I say a green one? Thanks, Luke. That was perfect! Thennnnnn…. Jodi ran the entire ½ marathon carrying about 50 purple and gold ballons!! You could look waaaaaaaaay down the street and see a bouquet of balloons coming toward us. There would be little Jodi, hanging onto those balloons for dear life and smiling so big! I will definitely include a pic of her in the new slideshow! Hopefully, Jessi can get to that tomorrow. Ya’ll need to see the pics so you can decide that you HAVE to be there yourself next year. You will want to!

The cheerleaders assumed the positions at certain miles along the route and waited on the runners… first the 5Kers. There were Hunter, Hayden and friends, who apparently thought they would RUN the entire 3 miles without a bit of training. They took off in a sprint, but needless to say, that didn’t last too long. Uncle Todd did a pretty good job, running almost the whole distance. The Finley family came by, but forgot their kids’ tennis shoes, so Heather was carrying little Piper in her Crocs. Way to go, guys. Then there was Dr. Mark who pushed Jake ( a BIG Jake) in his wheelchair the whole way. Jake, I am so proud of you. Thank you and your entire family for doing this in memory of our little Jake. Joanna had a great idea of taking Christmas pics for their Christmas cards in their TEAMJAKE shirts with their race numbers pinned on. Karl Kaufman and his dad were marathoners, but his wife, LoriAnn, and his daughter, BritneyAnn, did the 5K, hand in hand! Shannon Paine made the whole 3 miles without a day of training. Way to go, Shannon. Oh, you too, Veronicia. Veronicia said she intends to be the 12 hour pace girl for the half marathon next year! Pace guys are the ones who carry signs to let the runners around them know approximately the time at which they will be crossing the finish line. Speaking of time it takes to run a marathon… “supportive” Hunter was talking to Miss Jennifer Perodeau and realized something. He said, “So you are telling me that you are going to be running tomorrow almost as long as it took us to get to Memphis from Monroe?” Poor Jennifer looked like she had been hit in the stomach. I don’t think that thought had ever crossed her mind, or at least, not in that way. But… she made it! Her first marathon ever, and she told me that although it was a personal goal, she doesn’t think she would have ever been ablet o commit herself to something so huge without the inspiration of little Jake Owen Raborn! I saw her today, and she is limping but emotionally/psychologically, she is on a high!! Jordy finished his first marathon, and did so with flying colors. We are so thankful you chose to do it for St. Jude, Jordy. Jerry Kaufman, I got some really cool pics of you running up the 25th mile with St. Jude in your background! Thank you for your third marathon in Jake’s honor! Your family has been so instrumental in getting the rally going behind Jake! Steven Vessel…. You looked like you were taking a little stroll in the park when you came by us at mile 25. I talked to Steven later that night, and he told me the entire experience was just absolutely unbelievable. He said, “I am HOOKED. I will be back next year.” Jennifer said the same thing! Dawn had injuries, and I cannot believe that she is so dang hardheaded that she MADE herself go the entire 26 miles. I, and others, were expecting her to stop at the ½, but Noooooo, she didn’t show up at the finish line, so we knew she had gone crazy and we would be seeing her about two hours later! Because she met her goal of $5000, she wore her Wonder Woman costume as promised. She had TEAM JAKE on her cape. When she got to mile 25, she was hurting! Cheryl Leachman and Katie joined her on the course and walked about a mile with her, with Katie joining her for the last mile in a jog to the finish. That is what it is all about. I have a pic I will have to post of the three of them holding hands. It was so encouraging. I can’t even begin to tell you how many people told us that it was so helpful for us to be all around the course. Mom, Staci, Veronincia, and I got out at 6:15am on Saturday to start putting up banners (thanks, Pam!), signs (thank, Dad) and posters of Jake’s pictures (thanks, Crystal and Charlotte) all around the course. Sometimes, when people came by, it was obvious that they were struggling. In fact, right at the end of the marathon, some people would point behind them and say, “That’s John. He needs some encouragement.” So, we would go out on the course and jog along side them, saying, “Do you see those posters ahead? That is Jake. He spent 2 ½ years in St. Jude Hospital. He passed away October 5th. His mom is up there holding up signs to support you. In only a few days, she will be surviving the 2 month anniversary of her son’s death. If that isn’t motivation for you, I don’t know what is.” Many times, the runner ahead or beside or whatever, would say, “See, so let’s go, man.” It would be just the boost they needed to keep going! Gosh, how could it not be? We also made 26 reasons to run. We passed them out to as many runners as I could find on the morning of the balloon launch. I missed lots of people, because there was just a lot of chaos, so I will be posting them on the website in a day or two. Feel free to print them off. They really are inspiring!

Back to some runners… I can’t name them all, but I want to name a few, so you can all appreciate the impact Jake had on all these people. Lia Fryday, Rhonda Moody, and Kim Wassain all took up running this year, and all because they made the decision to run for Jake. They all did the ½ marathon and ran a good bit of it. At one point, I saw a whole sea of gold coming up the road, and in that pack was Lia and Eddie. Eddie’s life was changed in more ways than one… he lost 60 pounds while training for this run. He said before doing this, he could not even run to the end of the driveway without being winded. Does that inspire you? It does me! Kim Cox, the one who has started Jake’s Club in Benton, LA, also ran the ½. She had two of her PTA students with her, and we are so appreciative of Kim and her classes who have always followed Jake’s site and made it a priority. Matt, Melissa, and Maggie are all siblings who not only ran the ½ marathon but placed in really high positions. They ROCKED! Thanks, guys, for being on TEAMJAKE. We hope to have you back next year. I MUST mention all the employees of MMPT who made the trip. Guys, it means so much to me personally to have all of you supporting my family in this way. Shawn, Emily, Shannon, Nicole, Dawn, Karl, Beth, Monica, Renee, Patsy, Cheryl, Ron, Ashley, and Christina (oh, I sure hope I am not forgetting anyone!)… thanks so much. Really, my cup runneth over. Thank you from the bottom of my heart!


Staci never made it to the hospital. But, Carmen’s mom, Paula, showed up at the fence and Staci went over to hug her through the iron gate. Two of our favorite ICU nurses came out to visit (even while on duty in ICU) just to visit Staci! Isn’t that just so touching? Nicole and Pam, thanks a lot! That was a way Staci was able to “visit” without actually “visiting”. We knew that if a particular gas station was difficult to go into, then St. Jude would be virtually impossible. Maybe next time!

Mindy and Stephanie, you girls ROCK! For all you believers, let me tell you about this…. They drove 8 ½ hours from Dallas, AFTER work on Friday, JUST to cheer with us. That was so moving. Stephanie’s daughter, Dani, was 18 month old when she died suddenly of a viral complication of treatment for lymphoma. She was cancer free at the time she died. So, Stephanie understands very intimately why we stand on the side of the road for hours, thanking the runners/walkers! Mindy is just the kind of person who is going to stand by her friends no matter what! And, I am so glad that she considers us her friends too! Thanks, girls. Kacy, we so appreciate your coming out to walk for us. I hoped to give you one of the posters of Jake, or at least let you pick out the one you want for your office. Do you want a big one, or would you just like me to send a few faves via email and let you pick out whatever you want and print whatever size you want? Send your email address to mmptruston@mmptinc.com.

The weather cooperated. It was cold, but tolerable! We were running around like a bunch of chickens with our heads cut off as we tried to find all our runners all over the course. Would you believe that at one point, we just piled into the car and ran down the road alongside the route, honking and holding posters of Jake out the window. People consistently thanked us for being there to cheer them on. All of us on the sidelines would have to wait until EVERY runner was out of ear distance before we would admit that our feet were hurting! Staci sat down at one point because her back was hurting, and I said, “We should be ashamed! We haven’t walked the FIRST mile and we are hurting.” Now THAT is being out of shape! Actually, we were on our feet NON STOP from 6:00ish to about 2:30. So, that is our story, and we are sticking to it.

I know there will be lots more stories. Karl has asked for people to email him with their own stories from this weekend. We have a little project in the making. (Maybe our first Jake Owen Raborn Foundation fundraiser). I will have to run it by the president, Mr. Don Raborn, for final approval! Anyway, I will get that address and post it soon. It is in the guestbook posted this morning, I believe. Gotta go… gotta get to work, so Jessi can take it from here and get some pics up on this site. We love you all…

MoMo

Wednesday, November 29, 2006 11:03 PM CST

UPDATE Thursday 1:00PM

Go to www.commercialappeal.com and find the sports section. There is an article about Team Jake in the Memphis newspaper.

Team Jake Members - Please know that my heart and spirit will be with you on race day. I must stay here in West Monroe and work. I used my vacation time during Jake's fight. I'm so proud of each and every one of you. Your dedication to Jake and his cause is amazing. Be safe and always BELIEVE.

Jake's Proud Daddy








Ooooohhhwweeeeee....
We are almost on our way. One more working day down here in West Monroe, then we are off to the marathon! We had lots of people gather last night for a send off. We have given out so many tee shirts, and because it is just not feasible for everyone to go, we appreciate all you who have said you will be wearing your shirts on the day of the race. I have my signs, cards, face paint, sidewalk chalk, and banners. Now, if I can just fing some purple gloves, scarf, and and a hat, then I will be all set.

Staci and Don are homehome. I have not seen them yet, but I am certainly awaiting my "souvenier" with great anticipation. And, I told Stact, don't think about calling it one of my Christmas presents! Staci has her job of rounding up the last 20-25 signs tomorrow that our dad, Pops, is making for encouragement. Get ready, runners, you WILL be motivated.

Jin's sister, Aunt Bonnie, is out of surgery and doing well. They found the source of her spinal fluid leak, fixed it, and she is safe and sound back in her room. Thanks so much for your prayers. Jin is spending the night in Alexandria to stay near tonight.

For anyone going to the run, remember that there will be a team picture at 7:15am. I don't know the specifics yet because I haven't studied the race route. On the way up, I will get more informed. For SURE we will have a meeting point on Poplar at about the 12 mile mark. This is at the corner of LeBonheur Children's Hospital's property. There is a parking lot across from LeBonheur, so that can be a for sure meeting point. In the past two years, Staci and I have made some gains in our ability to figure out how to maneuver the race route without crossing the route. We will see you around the 2-3 mile mark, the 12 mile mark, and again at the 24 mile mark. The 23rd mile is right at the gates of St. Jude. That, in itself, should be inspiring to the runners! Hopefully, we will divide and conquer a little better this year. With more there to support, maybe we can spread out more. If you need my celli telli, to find us that AM, it is 318-376-7676. It is going to be soo, soooo cool. Thank you again, TEAM JAKERs. When we organized this whole thing, Jake was on a ventilator. Don said, "hey, I've got an idea. I need to call Karl and see if he'd lke to captain TEAM JAKE." Now, months later, well.... a lot has changed. I pray for strength for all the runners, supporters, and our family. I tend to get teary just THINKING about all the people there honoring and remembering that precious little angel! Mo

Monday, November 27, 2006 11:38 PMCST

**Tues., Nov. 28**
Jin Jin here requesting prayer again for my sister, Bonnie Poole. The doctors will open her up again tomorrow around noon to try to stop the leaking of spinal fluid. She is really petrified of this surgery. She hasn't been eating and has had trouble sleeping for worrying about this. Please say an extra prayer for her tomorrow. She needs the peace that only God can provide. Your concern for her has been very much appreciated. Knowing she's got Jake looking out for her is also a great comfort.

Thanks,
Jin Jin


Update: November 28th 4:00 pm

Just a reminder that we are going to have a Pep Rally tonight at Melanie Massey Physical Therapy at 6 pm. The bonfire has been canceled for this evening due to the weather. That doesnt mean we cant have fun anyway!! Come out and meet Team Jake, Team Corbin, Team Gus and Team Allen. The four teams combined have almost reached $100,000. Team Jake alone has raised almost $54,000.00 GO TEAM JAKE!! If you would like to support St. Jude through Team Jake, click on view Team Jake above.
Runner shirts and supporter shirts are in so come pick these up tonight! Thanks again BELIEVERS for all your prayers and support.

Always BELIEVING
Dawn Sumrall

As Dawn wrote below… don’t forget to come by the office tomorrow if you get a chance to pick up your way-cool tee shirts for the run. I am still just overwhelmed by all the people who will be heading to Memphis this weekend. Looking forward to a big balloon launch (500!!), lots and lots of purple and gold shirts, and signs, posters, and banners at every mile to remind everyone about a super cool, awesome, tough, precious kid named Jake! Staci is already making plans to visit a couple of friends at St. Jude, particularly Carmen White who is from Louisiana and has been in ICU for quite some time.

I thought I would be able to update on Thanksgiving, but it just didn’t happen. Not to sound “pitiful”, but I spent the morning bawling! I just couldn’t really get it together. But… knowing that Staci was on her way down, and KNOWING that she does NOT like all that crying and stuff. (Remember her rules about never crying or being sad in front of Jake?) Well, we all know that it is ok to cry alone, we just try to not do it around everybody. It tends to be contagious. Annnnyyywwwaaay… it was only Staci and Don, me and Todd, JinJin, and Hunter and Hayden. This was a very unusual Thanksgiving for our crew. It is usually a big, bid shindig. But, two of mom’s sisters were down with surgery, so there kids, and their kids’ kids wouldn’t be here either, so we just downsized it this year! When it came time to eat, I looked around and said, “How bout everybody just say their own silent prayers instead of an aloud blessing?” TODD said, “We can’t eat Thanksgiving dinner without blessing it… just bless the food!” Ok, ok… so this is the extent of my blessing,.. “God, thank you for our family. Thank you for our food. Amen” Then, again, I was crying. Jin was teary-eyed too, and I said, “WHY are you crying?” She said, in a laughing to keep from crying manner, “It was just so touching.” SO, we all kinda laughed a little, and were able to get on through the meal without too much sadness. Don’t get me wrong, it was like a cloud hanging over the room, but we made it through. Staci and Don tried to change their focus to packing for New York. Sometimes staying busy helps, ya know?

You remember those 20,000ish pictures I took over the past two and a half years? Well, because there are so many, when I look through them, it is like reliving the moments, days, months, years! I mean I toted a camera EVERYWHERE! So many cute expressions, smiles, pouts,… I love them all. Emma Lou, Jake’s best friend, and I made a cute little scrapbook this weekend with pics of her and Jake as well as artwork of them at the beach. She talks about Jake almost incessantly. She will say things like, “I am going to look at this book every night. It has Jake in it… and my heart, huh MO?” Yes, baby, my heart too!

I can’t say too much, but Uncle Todd may just be the best brother in law in the whole wide world… let’s just say, Staci and Don get to come home to a “yay” house!

Jessi has made some really cute Christmas Pay It Forward cards. If interested, email her at mmptruston@mmptinc.com I hope you have all found the Target cards by now. I gotta tell you besides being a little biased, I would’ve picked the green eyed snowman anyway! It is awesome. Jake and I painted glass ornaments together last year on Christmas day, so it was a little bittersweet to unpack them this year to decorate my tree. Jake , Jake, Jake… so precious!
Looking forward to a great time in Memphis. Mo


Hello all Believers,
This is Dawn Sumrall, I get the privilege of updating the website today. We have alot going on this week as we prepare for the race in Memphis. First of all we are having a "Pep Rally" bonfire at Melanie Massey Physical Therapy this Tuesday, Novemeber 28th at 6 pm. This will be a great time to pick up runner shirts and supporter shirts, or just come show your support and give encouragement to all the people "running to remember" Jake in memphis.
Congratulations to Team Jake for going above and beyond in reaching their $50,000 goal. Thanks to all who have supported Team Jake in every way whether it be financially or through prayers. Your support and encouragement is needed. If you would like to sponsor a team member click on Team Jake above,click on sponsor a hero, then find a runner you would like to support, 100f money raised goes to St. Jude. to help find a cure for cancer.
Please pray for Team Jake this Sat, Decemeber 2nd. The 5k race starts at 7:45 am and the Half marathon / marathon starts at 8:00 am. GO TEAM JAKE!!!!

Thursday, November 23, 2006 11:11 AM CST

Jared has a broken elbow. He will have surgery either tonight or in the morning. No other serious injuries except some scrapes and bruises. Although he will have surgery to fix his elbow we are thankful there are no internal injuries or head injuries.

*Prayer Request* Just received a call that Jared Huckabee, one the twins that has been a big supporter of Jake, had a motorcycle wreck this afternoon. My understanding that there is no head trauma but a lot of places that are hurting him right now. They are waiting on scans to pinpoint his injurys. Please say a prayer for Jared.

Thanks,
Uncle Todd


Thursday, November 23, 2006, 6:21am

Just stopping by to wish everybody a Happy Thanksgiving. We hope all of you have a great day and a safe weekend.

Today will no doubt be a tough day for us but we are a strong family and we will be alright. We are thankful that Jake won his battle and that there is no more pain and suffering for him. We are thankful that Nana is in Heaven with Jake and no doubt is taking great care of him. We are thankful for all the Believers that have joined us on Jake's journey. The Journet is just beginning. Jake taught us so much in his short time and it is our job to continue his mission.

Staci and I are headed to New York City on Friday. It will be our first vacation alone in over 10 years. We are looking forward to spending some time together.

Not much else to say this morning. Missing Jake more each day but I feel so very blessed to have been his father.

Have a great day

Still Believing,
Don- Jake's Dad


Hey, it is 11:11am here. I just walked by the clock, and as usual, ol' Jakipoo was saying hello. I know he is wishing us a happy day. There are lots of exciting things coming up this week, so check back a little later for a run down. Way to go, TEAM JAKE!! Pushing through that $50,000 mark! I know St. Jude is working hard on a cure for neuroblastoma, so maybe this moolah will help finish that stupid disease off. Hepatoblastoma, you are next.

Thankful for all of you for continuing to support our family and for keeping Jake's memory alive!

MO

Thursday, November 23, 2006 6:21 AM CST

Just stopping by to wish everybody a Happy Thanksgiving. We hope all of you have a great day and a safe weekend.

Today will no doubt be a tough day for us but we are a strong family and we will be alright. We are thankful that Jake won his battle and that there is no more pain and suffering for him. We are thankful that Nana is in Heaven with Jake and no doubt taking great care of him. We are thankful for all the Believers that have joined us on Jake's Journey. The Journey is just beginning. Jake taught us so much in his short time and it is our job to continue his mission.

Staci and I are headed to New York City on Friday. It will be our first vacation alone in over 10 years. We are looking forward to spending some time together.

Not much else to say this morning. Missing Jake more each day but I feel so very blessed to have been his father.

Have a great day.

Still Believing,
Don - Jake's Dad

Thursday, November 16, 2006 10:56 PM CST

**Mon. Nov. 20**

Hello everyone...It's Jin Jin back to ask for more prayers for my sister, Bonnie. The doctor revealed to us that her surgery was one of the most complicated he's ever done. Bonnie was born with a deformity in her back and had lots of surgeries as a child. The doctor said the complicated surgery was because of all that. She began leaking spinal fluid, and they had to remove all lines, including her morphine pump. However, she is still leaking the spinal fluid. The doctor said he would watch her and if the leaking didn't stop, he would have to go back in. She knew there would be a lot of prayers said for her if Jake's Believers got behind her. Please ask for the leakage to stop and for no more surgery.

Thanks, friends.
Jin Jin



hello all..MoMo here.
Do you remember when, out of the clear blue, Jake decided to call me that instead of plain ol' Mo. Now I love to be called that! In fact, my cell phone ring says, "Hello, Moto." and every single time, I say, "Hello, MoMO." Ok, enough about that...

Aunt Bonnie came through her back sugery today quite well. I think her poor ol' back was a mess. She is full of plates and screws, and cages, and other hardware, but she is certainly stable now. ONly 5 1/2 hours of surgery, but praise the LORD, she is ok. Thanks for all your prayers.

Now, let me tell you some other big occurences of the day. First, Staci needed me to go to the Lifeshare blood drive at the local University (ULM). The Panhellenic council put this drive on in honor of little man, Jake! Again, the Creekmore family helped organize this with Jake in mind. I went out and took big ol' posters for them to plaster all over their big bus. Hopefully, they wooed more in than expected. I gave blood, and when I was through, I was offered a chocolate cookie thing and a coke. I thoguht that was just a "thank you" for donating. As it turns out, you really need to eat something afterwards. I was woozy and nauseated all afternoon. How in the world did my precious nephew do that so often? He was one tough kid!

The BIGGEST news of the day is what Staci did! Remember the request by the local family to help with transportation to get their child to his chemo treatments in Shreveport? Well, Staci went and picked his mom and him up today and took them, herself, to Shreveport. Now, picture her walking into the very same little treatment area where Jake was less than two months ago. Sitting in the same treatment chairs, and seeing all his doctors and nurses... You gotta KNOW that was tough! But, in true Staci style, she was a pillar of strength. She was laughing about how Cheryl, the nurse practitioner would tell every single person who came in, "This is Staci RABORN. Her son received treatment here. She says her family was given so much, and this is just her way of "giving back", and they have started a foundation in his honor, and they call it "pay it forward" when they do something like this, and....." then she would start crying... every time! Don't you know it was just as moving for them to see her there? Staci even had to explain a lot about hepatoblastoma to Jacobi's mom, like AFP's and such... well, I guess she has found a new purpose! Pretty inspiring I think.

I need to give a big ol' shout out to Dawn Sumrall and Tonya McGehee who have had to go around the world and back to get the runners' shirts ordered. They were surprisingly unavailable in the gold color they were expecting. Buttttt... they have already ordered the long sleeve that so many others ordered. We DEFINITELY wanted them all to match (you know, for "impact"!) Anyway, girls, we salute you for your efforts! Do ya'll know that St. Jude is actually reserving an entire suite after the run just for the Jake runners? SO cool, huh? SO, cheerleaders, we will need to be organizing a decorating committe for Friday before the race. We are also trying to find a good place for an RV to park along the race route that could serve as a gathering place for everyone later that day. We would LOVE to organize some sort of cookout, but I don't know if all that will get handled. We'll see. Anyway, if you are a Memphian, help us find a spot for the RV that will also accomodate many cars as they gather. Jodi Johnson, I also want to give you a shout out for organizing the balloon release for the run. Dawn told me about it yesterday, and I almost bawled. Since I would imagine everyone is about tired of my crying at work (it just comes at the strangest times!), I held it back. But, I was truly moved! FYI, all the runners will be holding a balloon to be released with shotgun start. How COOOOOOOLLLL is that? Then, there will hopefully be enough for the cheerleaders to have along the route too. As the Jake runners pass, we could let them go to inspire them to keep on truckin. Easy for me to say, I will be in mittens and drinking hot chocolate on the sidelines!

Stay tuned for a really good Christmas idea. Don told me to post it, but I am getting really nervous about losing my update! Once bitten, twice shy, babe! I will save it for the next one.

Oh, I need to mention a couple of our believers family members who need to be lifted up... Dawn Rushing's mom is not doing well at all. Dawn has been with the Raborn clan since Day 1! Thank you, Dawn, and know that our thoughts and prayers are with you. If there is anything we can do... And, of course, you all know Miss Fay, prayer warrior extroidinaire... well, she also has a family member in need of prayer. It involves the heart, but needs to be left a little "anonymous", so just know that her family needs our prayers. We love you, Miss Fay.

Keep looking for the updates... there is a lot coming up!

MOMO

Sunday, November 12, 2006 10:32 PM CST

**Wednesday, Nov. 15**

Hello Everyone,

Jin Jin here to ask for prayers for my sister, Bonnie...just for clarity, she is Staci and Mo's aunt, not the other Aunt Bonnie, Don's sister. She is having extensive back surgery tomorrow and faces a lengthy recovery period. She has been and continues to be a faithful Jake Believer. I know she and her family would appreciate prayers on her behalf.

Our family is so thankful for all your prayers. I knew this road would be hard; I just didn't know HOW hard. For me, the meltdowns come at the most unexpected times. I loved that baby with every fiber of my being. Just like everyone else, I have a huge hole in my heart that seems "unfixable." During the good times, however, there are the many, many good times on which to reflect, and they have not lost their magic on me. I try to hug Hunter and Hayden a little tighter and a little more often, but being the big boys they are now, the kisses have to be coerced from them!!

Thanks for continueing to support us. We love you all.

Jin Jin


Howdy everyone… time is drawing nigh for one of the “biggies” we had all been looking forward to this year…. The ol’ St. Jude marathon! I don’t know exactly how many, but somewhere in the neighborhood of 120 are registered to run for Jake! I remember seeing a group of about 10 or 12 running for a little girl named Hannah, and saying to Staci (on the sidelines, I might add!!), “Well, isn’t that cool?” I thought it was so inspiring to see so many people keeping Hannah’s memory alive and continuing to run for St. Jude. Well, can you imagine probably somewhere in the neighborhood of 150 in purple and gold BELIEVE tee shirts all over Memphis! I think it is going to be awe inspiring. Thank you, runners, for doing this for our family, Jake, yourself, and St. Jude. ANDDDdddd… our team is almost to its goal of $50,000! I was pretty shocked when the team leaders, Karl and Dawn , who both work at my office, set that lofty goal. We even set up one of those thermometers, (you know, like the ones they put in church when there is a building program!!) to watch the red glitter go up as we approached our goal. Well, we are almost there!! Cheerleaders, if there are any of you out there making the trip (MINDY!! Woo hoo), start making your signs. Staci and I will be checking out the route and planning out our stations to cheer everyone on along the way. We will assign those in charge of the morning sign duty, and those who sleep in will have to bring the hot chocolate!! Our pastor, “Bubba Greg” has also joined the team and even went out to see if he could do 13 miles yesterday. He did it! And I told him I would meet him up at my clinic today if he needed treatment!! Eddie, Karl learned a new technique this weekend that may help your knees. Call if you are still struggling.

Now for the rest of the crew… Don and Staci are doing ok. I have been so, so proud of them as they have jumped right into the church , and even made it to the Sunday School party last night. I know that there is RESOLVE to do that. We are studying the beatitudes, and well, “Blessed are those who mourn, for they will be comforted!” What else can I say about that? Staci said she started updating this past week, and as she started into some stories, she had a “meltdown” (that is what we affectionately call our moments of immense sadness!) and couldn’t finish. Having our friend, Cindy Foust, who also lost a child a few years ago, has been so incredibly helpful for Staci. When she thinks she is doing something that may be “crazy”, Cindy assures her that it is all OK and that she needs to do whatever necessary to heal her own heart. Staci has bought a few things that she knew Jake would’ve wanted… like a Lightnin’ McQueen blanket. No way she could pass that one up! She and Don haven’t had too much luck on cleaning out anything or even opening boxes, to be honest… but Cindy is there to say, “ so be it! It can stay there until the boys are in college if that is what you need.” She validated for Staci that wanting to keep old medicine is even mighty fine if it brings comfort! That is such a good friend.

Staci did relay a couple of stories that she was going to try and type the other night, so I could try the third hand version tonight. Emma Lou, Jake’s best buddy, and her mom, Paula, bought a green balloon the other day and decided to let it go to Jake in Heaven. They were on their way to Lowe’s, and because Emma had to put on her lipstick and put kisses on it, they were planning to let it go there. Once there, they saw Staci’s vehicle and went in to find her. Emma invited Staci to put on some of her lipstick and kiss it too, prior to letting it go. So, with red smacks all over it, the two of them went outside and sent a little “present” to Jake. Staci said she has NEVER seen a balloon go so high.

We are LOVING the stories you are providing about Paying it forward, and even the babies who are now putting their hands up their moms’ sleeves or saying, “ I love you to the moon” for the first time ever! Staci had her own little Pay It Forward the other day. She was riding down a main thoroughfare in town when she saw a couple of girls obviously on their way to work at Captain D’s. Staci stopped and asked them if they needed a ride to work. They said “of course”, and climbed in. Staci was excited to have the opportunity to tell them all about Jake. (Of course, they had heard of the local hero) Moved, they took a card from Staci and promised to do something nice for someone later in the day. Staci made them promise to do so before they got out of the car!

Special thank you to the Huckabees who went out to visit Jake’s resting place and left a dirtbike trophy that the twins had won at a dirtbike race. So cool… thank you Jarrod and Aaron (and Sam!) for stopping by. Staci and Don get comfort from seeing where people have visited.

Thank you to everyone for the continued support of Staci, Don and the boys. They continue to receive cards daily, and they are so appreciated! Just so you know, the foundation is underway… Staci and Don have a meeting with a CPA tomorrow to learn the ins and outs of the process. Would you Believe that there have already been two requests for St. Jude kids who are local to receive help. That is what the foundation intends to do… help those who need help! There is a 14 year old who has recently been diagnosed with hepatoblastoma from Monroe. Staci and Don are working to get them some wheels to go back and forth to Shreveport every week for treatment. Another local kid could really use some help for Christmas! Hey remember… it is all about paying it forward! “To whom much is given, much is required.” Or to quote another beatitude… “Blessed are the merciful., for they shall obtain mercy.” I bet Bubba Greg is so proud of me!

Speaking of the Foundation, I need to mention a few folks who may or may not realize that their most recent contributions were used to start the ground floor, financially, of The Jake Owen Raborn Foundation. Mr. and Mrs. Adcock, your donation was the first contribution which actually allowed the whole thing to take off. Then, the girls of Drew sent a donation, collectively, which was added to the pot. Most recently, our Sunday School class made a memorial donation in memory of one of our members’ parents. We will be sending them a notification that their father was remembered with a donation to Jake’s Foundation, and will soon be helping kids with cancer meet needs.

The boys seem to be doing ok. Strangely, they have been very quiet about it all. They don’t talk much about Jake. They don’t necessarily avoid talking about him, they just don’t bring him up. However, there is this one road in town that has a steep drop off , and Jake just LOVED it! Staci and the boys were going down that road the other day, and Hunter cut his eyes at his mom, and was obviously a little apprehensive about putting his hands in the air… Jake style! Staci said, “Well, go ahead!” and three sets of hands flew overhead with a “wheeeee”. Jake just loved that hill.

There are still Happy Merry Chrismaween decorations (including the tree) all over the place. Staci will need a little help to tackle taking it down… after all, it was all put up in “celebration” of Jake coming homehome from the hospital. Approaching the holidays is a doozy! But, we are Christians… so there is hope. And we KNOW in our heart of hearts where our dear Jake is…and because we know Jesus, we KNOW we will see him again. SO, praise the LORD. “ And that’s all I have to say about that.”

MO

Thursday, November 2, 2006 7:23 AM CST

UPDATE Wednesday, November 8th, 7:30am

Pops is home and on the road to recovery. Aunt Bonnie is out of the hospital and back at work. Staci has been sick the last few days so extra prayers for her are needed. Hunter & Hayden are doing good. They are both doing well in school. I'm very proud of both of them.

Pray for Staci & Me as we continue to work on the foundation. This will be one of the most important things we do in our lives so we want to make sure that it is right before we present it to the world. Jake's story must be told over and over again to raise awareness and support. The world is a much better place because of Jake and this foundation will continue what he started.

Keep in touch. Have a great day.

BELIEVE,
Don - Jake's Dad








Just dropping in to catch you up on some things. Pops is doing well. He is still in the hospital but things are going as expected. Jake's Aunt Bonnie is in the hospital with pnuemonia so please pray for her. I will try to keep you updated on both of them.

Staci & I are getting by. The emotions seem to come in huge waves without any warning. The pain is unbearable at times but there are also some good times remebering our precious little boy. I will try to share with you now one of those good times. It was when we had brought Jake home on hospice and he woke up in the middle of the night. He asked if we could go to the living room and watch cartoons. We made it to the living room and he ate a ham sandwich, some M&M's and watched cartoons. A little later, he said he was ready to go back to bed. I went to pick him up and he sad, "Daddy, Thank you." He was telling me thank you because he knew it was difficult to move him around with all of his medical equipment. Even at 4 years old, he was wise and polite beyond his years. It was one of my favorite moments with Jake.

Thank you checking in on us. We don't have much to say right now but reading your comments helps us more than you will ever know.

Even though Jake's physical life here on Earth is complete his eternal life has just begun so this website and his legacy will continue. A foundation will be started to honor our warrior among some other things that we're working on.

Team Jake is close to reaching their goal. Click on The Team Jake link above this journal entry to make a donation to a team member. A Fundraiser for Team Jake will be held Nov. 10th at La Bella Vita here in West Monroe. For ticket info, Call Mo's office at 396-1969.

Keep checking in. The marathon is a month away, the foundation will be starting, and you never know what else we might be up to.

Believing in the legacy,
Don - Jake's Daddy

Tuesday Morning:

Hello everyone... thanks so much for your prayers and concern for Pops. He had a rough day yesterday, learning about being on the ventilator as he is waking up. We kept reminding him that Jake was interceding for him, and we'd help him count down the hours until it came out. He is clausterphobic (?), so that thing down his throat was his biggest concern even going into the surgery! As long as he kept his eyes closed, he could function, but when he opened them, he would start to panic... but the good news is... he is stable. All vitals were looking good when Todd and I headed home last night around 9:45pm. Staci, Don, Rita, and dad's friend, Judy, are all still there with him. It must be a Massey/Raborn thing, but you should have seen that waiting room. Probably 20 people drove over to be there with dad. Thanks to all those who did! It is very comforting to have that kind of support. I wish I had a dime for every hour I have been in a waiting room for the last three years! Wouldn't trade ANY of them, though! I

Still promising a better update later. I have to get my costume on for the day's festivities. I, and my PT staff, are going as a basketball team from the 70's... think afro, terrycloth head and wristbands. tube socks.... it is going to be a scream. The speechies at MMPT are going to be M&M's in honor of a sweet little angel. Then, we have the Pink Ladies, girls from a sock hop, witches, and Not sure what OT decided to be. It should be a fun day. I'll be giving out the candy that Jake and I ordered. Bittersweet! OK, ya'll have fun tonight, give out those M&M's, and find a way to pay it forward in honor of the JakeMan. MO


Sorry to use this site for some "breaking news" type things and not give you a good update, but I promise a new one this week!

Pops, (Staci and my dad), is going in for open heart surgery tomorrow morning at 7:30am. They say it will be a quadruple or quintuple bypass. Staci and Don are already in Shreveport, and Todd and I are on our way out the door! Since this site is chock full of folks willing to pray, I have to ask for prayer for our dad. He knew about the blockages a couple of weeks before Jake came home, but felt it was The Lord's good timing that allowed this all to fall in place when it did. Pops (aka Larry Massey) is a nervous wreck about waking up on a ventilator and he'll be going cold turkey on another bad habit! That has him a little anxious too. If there are such things as intercessors in heaven, I will sure be asking Jake to use a little pull and be right there with his Pops. Ventilators are nothing new to the Jake man! Please pray for a clear and easy plan for the docs and that Pops sails through without a hitch. Thanks. MO

Update 11:09am Saturday...
If you feel so led, please stop by www.caringbridge.org/visit/marcuspinsanor to let his mom know that you are thinking of them. Having just experienced such a loss, we know how comforting it it to know that so many KNOW about your loss and are there to offer support. Michelle and Marcus shared the ICU for the entire time Jake was there after his last lung surgery. Michelle was valiant, and stood right by her son, alone, for the duration. Marcus has an older brother, Clay. Thanks... Mo


Hello again… Thanks so much for the continued support. We feel the love oozing off the internet and into our lives. Thanks so much for the specific prayers. This is a difficult time for everyone, but it is obvious to think that Don and Staci need them the most. Staci and I have been able to hang out a little, eating lunch occasionally together and of course, we go to their house every night! The boys are still doing well. Hunter has a big middle school dance this coming weekend. He is going as a T Bird amongst many Pink Ladies. That stud! Hayden seems to be doing ok. He has always been the one who keeps things in a little more than anyone. He LOVES having his mom take him to school and pick him up. In fact, now Hunter thinks he is too good for the bus , I suppose. Mama Staci has to go get him after school too. I started “art club” on Monday nights like I have tried periodically during Jake’s illness. Staci and her friends Veronicia and Polly were present at our first official meeting. They are making fun of me for taking it so seriously, but art club IS serious! Ha We made out our Christmas lists and are planning to make some really cool things for moms, grandmas, and friends. It is so good to see Staci laugh. I am positive there are those sad, crying times, but she is doing a good job of being balanced right now. In fact, we went shopping at Target this past weekend, and Staci was able to shop for Christmas decorations. I think that was a big hurdle. She bought a 4 foot (at least) metal airplane to hang from the ceiling above the Christmas tree. Whoa… let me rephrase that… “hairplane! She has decided to do a lot of GREEEEEEEEnnnnn this year! That is Jake’s favorite color in case you didn’t know that. He ALWAYS chose green when given a color choice. And, Miss Cindy had a cool idea that we may make a bunch of M&M covered Styrofoam balls to hang on the tree. There are many people who write on the guestbook who have lost a child. They consistently tell us that the holidays are NOT fun. In fact, I would only imagine that the first set of holidays will be among the hardest. So, as Staci went shopping to make Christmas a special event for the rest of her family, I was very proud of her resolve! Let me restate it…. It will never be the same, but I can’t help but think that that doesn’t mean that it can never be good.

I need to take a moment and take care of a little “New business”. With these parliamentary procedures, you can imagine “art club”, can’t you?! Haha Dawn Sumrall is featured this month on St. Jude’s website. This will be her second year to run the St. Jude marathon in honor of sweet Jake. Check her out there. The site www.stjude.com. She is in charge of getting all the TEAMJAKE tee shirts ordered. This includes the runners, the cheerleaders, and just plain ol’ folks who would like to get one. I am not sure yet, but I think they will be 12 bucks. Shipping is always the big issue. If you are going to be at the race, it would be a great time to deliver the shirts. If you think you may want one, please email Dawn and let her know. Email her at dawnsumrall@believeteamjake.com Cool email, huh? The shirts have a Acts 24:20 on the back and are long sleeve. They are gold with purple writing ( burnt orange just didn’t look good, Dawn, Todd and Jane!) and say “Running to Remember TEAMJAKE” . We are looking into having “BELIEVE” down the sleeve. She will need to know your size too. Onto more “new business…

We gave out some really cool “believe” stickers for people to put on their car windows or wherever at Jake’s service. We have some left and would be glad to send them out to you, BUT… and I hate to have to ask this, but it would be a huge, huge help if you would send a self-addressed stamped envelope to Dawn Sumrall
107 Summer Lane
West Monroe, LA 71291
Surprise, Dawn, you have yet another “job”. I will give you lots of time to do it and greatly appreciate all you are doing. Now, one more item of business…. Jessi has made some pretty cool cards that we are using to pass on to people when we do a “pay it forward”. It gives them a little picture of the kid who is responsible for the good act being done. In fact, today, Staci went in to get her phone fixed. The dude at the counter asked her about her “HOPE” keychain. He said, “I love that. My wife’s name is Hope, and she would love one of these. Where can I get one?” She said, “Well, mine came from St. Jude. My son was a patient there.” He replied, “Are you Jake’s mom?” (Have I mentioned that he is a local celebrity?!) Anyway, Staci met me for lunch and got a couple of cards to take back to him. She gave him a HOPE keychain and told him about “pay it forward” and gave him a card to pass along to the next person who he pays it forward to. Isn’t that going to be awesome? Anyway, to make a long story short (that is a funny phrase because my stories are always long before I ever make that statement!)… Jessi has agreed to email anyone who asks for it the cards to then be printed and used as you like. They also say, “In loving memory of Jake Raborn.” It gives you an opportunity to pay it forward, give a testimony, and tell the world about this cool kid! I think there is a little work that is going to have to be done to make it readily available for anyone who wants it. I think it was done in Publisher, but she plans to make it available for everyone who wants it. mmptruston@mmptinc.com if you want them. We are also attaching them to M&M’s for Halloween!

Thanks to those of you who continue to support our TEAMJAKErs. Even tonight, Todd said he had new donations in his fund. SO cool… Did you know that TEAMJAKE set a goal of $50,000.00 back in July. At present, it is at $38,000.00! Whoa! Way to go, peeps.

There have also been some people mention a foundation in honor of Jake. Well, his daddy-O is working on that right now. Staci and he have some cool ideas on “paying it forward” through the foundation. A few special people have given Staci and Don money in lieu of flowers, and told them to do whatever they want with it. This will likely get the foundation going. Don is working on the name of it, the board, and the definite purpose.

Did you see the new pic of JJ Yeley’s car? I am not a big racecar fan, myself, but JJ is my FAVORITE driver for SURE! Staci, Don and JAKE were always NASCAR fans. I don’t think they EVER expected something like this. Such an honor! Thank you, JJ. Of course, Jake had long since picked out JJ’s car because it was GREEN. Speaking of green….

When I got home Monday night, I dropped by the Raborn house. (surprised?!) Hunter and Hayden were walking to the backyard and told me to come with them. When I got back there, they showed off their new four wheelers. Hayden said, “Mo, Jake wanted to get me and Hunter four wheelers for Christmas. He wanted them to be green. Isn’t that so cool?” Yeah, Hayden, that is really, really cool!!

Boy, do I miss that kid!

MO

Sunday, October 22, 2006 10:21 PM CDT

Well, where do I start? I suppose the best way to put it is I MISS JAKE! Staci gave me the go ahead to update, although neither she nor Don gave me any information they would like to pass on at this time. Our little getaway to San Antonio was really a nice divergence from the inevitable of coming back home. Once back home, back in the “normal” routines, things changed fairly radically! When the grief hit, it hit hard! As close as we all are, there are times that we are in the room together, yet there are just no words. For the record, Staci’s “normal routine” for the past two and a half years has been to take care of Jake. He has spent very little of the past couple of years able to walk, so he was practically a part of her! Her purpose was to care for him. It is a struggle now to go forward without her “purpose.” Because Don has taken so much time off while Jake was sick (and now, aren’t we all thankful for THAT?!), he had to get right back to work. In fact, their plant is having a shut down, so he is working 12 hour days everyday! He is worn slap out. He tends to grieve the most when he comes home. I am quite certain that little man is on his mind every waking hour, but it is coming home that is toughest for him. This was always HIS time to have Jake sit in his lap or want his dad to lie with him. 6:30ish pm is toughest for Don. That would be a good time to pray for him!!

Today, Staci, Veronicia, Aunt Bonnie, and I painted crosses and pendants for about 6 hours!! Remember those crosses that some of you may have ordered as long ago as MARCH?! Well, we haven’t forgotten, and now we are more determined than ever to get those orders filled. The good news is that the more we paint, the better we get, so if you are having to wait a long time for yours, at least you can take heart in that they should be really, really cute!!

Hunter and Hayden have handled the change like champs! I have not actually seen them very sad. I am sure there is some degree of emotional confusion for them! They surely miss their little brother, but can you imagine how happy they are to have their mom back with them? As a matter of fact, simply getting to sleep in their own bedrooms and not have to pack a bag of clothes every single day must be pretty nice for them. They were really, really giving brothers to their little brother! Good kids!

Jin is doing the retirement thing, and if you can believe this, a dentist was giving her an appointment and asked her if she could be there for 8:30. She asked, “Do you mean 8:30 in the MORNING?!” She was appalled! I think she may actually be hibernating! She deserves it… I think she was in the school system for something like 38 years, and with her last few years in administration, she had to be there extra early to get the school unlocked and ready for the day, so now she is just catching up on some much needed rest! She and I have discussed some of the things that remind us of Jake and that have caused some little breakdowns. I will share a few of mine.

I wasn’t sure if going back to work (with KIDS!) would be hard or healing. In fact, it has been pretty healing! I think it is more about keeping my mind busy during the day. I say that because just about the time I hit the door in the evening, I find myself reminiscing and crying my eyes out. That could be some of how it is for Don too. Anyway, I was working with a little girl this past Friday, and I had to change her diaper. I lay her down and as I was changing her, I asked her mom, “What size are these diapers?” The mom started explaining how she got more in the package with the smaller size, and she was embarrassed because she knew that she really needed to go up a size. I was vaguely paying attention to all that, and she never realized that I couldn’t’ care less how snug the diaper was on the child. I was in my la la land of picturing Jake’s little belly, and as I secured the tabs, I was about to lose it! This was an activity we went through with Jake MANY times a day… and sure enough, they were the same size as Jake’s! Then I was working with another kid, and when we got done, I put her back in her wheelchair, and she was struggling to get her oxygen back around her ears and in her nose. It was the same nasal cannula that Jake wore for so long. I helped her tuck the little tubes around her ears and had to just walk away to not lose it right then and there. Lastly, on Friday, I went to the doc about my back (FINALLY), and I cleaned out my purse while waiting. Aside from the many things in there that reminded me of Jake (his hospital arm band, some Juicy Fruit Grapermelon gum, and several Jake sized bags of M&M’s), I also found some order forms that I had filled out a few weeks prior and had failed to place the orders. One was to Oriental Trading and was for Halloween candy. I got back to my office and decided to place the order. Halfway down the list, I whispered to Jessi, “I am getting to some things that Jake had actually asked me to order.” I got teary and couldn’t finish the phone order. Jessi said, “I’ll take it from here.” God bless her! Jake had seen a “bag of blood” (some sort of red juicy candy), in the catalog and said, “MO, look, blood… just like me.” Poor kid… He saw so many bags of blood in his short little life. Of course, I included that on my order form. Then, there was some Mummy Wrap bubble gum that I had written on the order form just for Jake. That boy DID love his gum!

Speaking of gum, Staci still has three little bowls on her coffee table that have his gums and M&M’s that he was demanding during his last week at home. She is not making too much headway with cleaning things out or organizing his things. Jake didn’t have his own room. It was in the works, but because it wasn’t secured yet, he had a playroom, the den, the garage, her bedroom, and had a good many of his clothes in her closet. It would probably be easier if they were all together. Rather, there is Jake EVERywhere in their house! Where to begin? She started with his meds, and even that was a challenge. She had to pack up some of the life sustaining pumps and send them back to St. Jude. That, I am quite sure, was heart wrenching. Baby steps, I suppose. Noone is in a hurry, so all in good time.

I have been in awe of the support that continues to pour from the hearts of the Believers. As long as it is ok with Staci and Don, I promise to try and continue to keep you updated on the progress around here. As one person put it, it is like reading a book and needing to know how all the characters are doing. Out of respect, I did not replace Don’s message this week, and as many of you seemed to instinctively guess correctly, there was a LOT of pain, and just NO words! Staci asked me today to give an update. Hopefully we can do a better job, so please continue to share your Jake-sightings and Jakeisms and God Winks, as they strengthen us and give us such hope for recovery. I will give you one of my own tonight. Anyone who has ever lost someone,( and may I say that a KID is an entirely different story), may have felt, as I did, that going back to church would be hard. Something about church just totally humbles me and I am a blubbering idiot when I walk in the building. But MOSTLY, it is when the singing and music begin. Well, I hadn’t been back since about August (due to trips to St. Jude, hospice, and the obvious). Last night, I was telling myself, it is time! But as morning came around, I was struggling to wake up. I just kept avoiding getting out of the covers. I think I was kinda deep down hoping I had overslept. I had to be at Sunday School at 9:30. I looked up, and lo and behold, it was 8:11am. I have long since thought the number 11 on the clock was somewhat significant. Remember me talking about 11:11 on the clock? I don’t know exactly why, but there has always been some significance of that to me. Jake passed at 3:10, so he missed that 11 by just barely ( I just this minute realized THAT!). When Staci and Don returned from the cemetery to find his plot, she said we chose, #11. I said, “that figures!” So, at 8:11am, I KNEW my little nephew was telling his ol’ crazy Aunt Mo, GET UP and GO TO CHURCH. And so I did. I KNOW that is what he would want me to do…and I KNOW that is what I need to do. I have read many of the excerpts that have been written, but one that touched me deeply was posted by Joan Boyer. It was posted on Friday, October 20 at 5:30pm. Joan is Spencer’s mom. Spencer is at St. Jude and was Hunter’s buddy when he was up there to visit. It spoke about the PURPOSE of the disease. I LOVED the part about his cancer being beaten back by LOVE. Man, if Love could have healed Jake, cancer wouldn’t have stood a glimmer of a chance. We loved that boy so, so much. I also reflect on the part saying the purpose of his disease was to make those who weren’t praying, pray. So, with that, I know it also means that Jake’s disease was to make those not in church, GO to church! Thank you for waking me up this morning, Jake. Greg Hayner, I also so appreciate your seeming to understand MY heart, and always saying just the right thing to bring comfort! It really IS something that our church’s memory verse this month deals with the brokenhearted. Psalm 51:17 Then, today’s sermon was the beginning of a study of the Beatitudes… “Blessed are the poor in spirit, for theirs is the kingdom of heaven. Blessed are those who mourn, for they will be comforted.” Matthew 5:3,4 Interesting, huh? Jake KNEW I needed to go hear that!

Jeannie, I remember your writing one day about your son having a couple of procedures and how you and Doug realized the ENDURANCE that just have gone into taking care of Jake for over two years. Well, you are SO, so right! I cannot tell you how many times Staci and Don came back from turning Jake over to the surgeons and walked back, hand in hand, crying. Then, there were the 20 rounds of chemo, radiation, bone marrow transplants, etc.; all which required consent forms that you would NEVER want to have to risk on your child. Jake would have to be put out (anesthesia) multiple times in a week sometimes. Any of you whose child has ever had to be put to sleep, well… you know it is scary for just one time! Jake was a champion! And his mom and dad had to be the pillars of strength that he could look to for courage. Rarely, was Jake afraid! The treatment for cancer is really awful! I think we should ALL be in prayer that there is a less harsh treatment developed for curing pediatric cancer! It is just too much for those babies to have to bear.

Kim, I LOVE the Jake’s Club idea, and I would like to do something to help. If nothing else, let me know how I can at very least introduce the kids to Jake by sending his pics or something like that. I would also like to come and help serve in a civic activity you guys are participating in. Maybe, Jake’s brothers could come help too.

Well, I feel a big fat burden to make sure I am doing a good job now with the memory of Jake. I hope you feel our pain, pride, and love for this precious angel. Things aren’t the same, but we are all trudging along. Really, what options are there? The only choice we are given is the ATTITUDE we choose to project during our time of extreme sadness. I hope you see the love of God through our family.

Mo

Monday, October 16, 2006 11:31 PM CDT

Just wanted to stop by and let you know how much we appreciate all the comments in the guestbook. Staci & I read every entry.

We are completely heartbroken and just trying to get by. For me it is literally taking it minute by minute. Jake meant the world to me and I wish he was here with me right now. I'm at peace that he is no longer hurting.

We will have more to say in the coming days and weeks but for now the words are just not there.

Keep Praying.

Always Believed in Jake,
A Very Proud Father - Don

Sunday, October 15, 2006 0:40 AM CDT

Well, Todd, Jin, the boys and I are back "homehome". We dropped Staci and Don off in Shreveport for a night alone before they head home tomorrow. Poor Don (and Poor me!) has to go back to work Monday, so this is there last night without any real obligations for some time.

Our trip was nice. We picked San Antonio based on all the things we wanted to have for each person involved. If we had not found a Dave and Buster's arcade, the boys would have definitely gotten the raw end of the deal! Schlitterbaun (?!!), the world's biggest/best waterpark is closed. Fiesta Texas (think Six Flags) is only open on the weekends. We got there Monday, and had to leave today. Sea World.. same hours!! Anyone who has been to the Riverwalk there knows that basically it is 2 miles of restaurants. So, once we ate lunch, it was like we would go back to the room and rest up until we figured out where we would go for dinner! Not a very exciting trip, but I suppose it was just what we all needed.... there was no agenda, no alarm clocks, and no stress. As I posted earlier this week, we tried to look for opportunities to talk about out little angel anytime we felt the urge or saw a memory. There is something to be said about being away, though! It didn't take long back in town for reality to slap me hard.

First, we called in Johnny's Pizza on the way home and stopped by before going home. As I held it in my lap, I thought about how much Jake loved that pizza and how food actually comforted him in his final days here on earth. There was so little he could do physically, due to his severe weakness. He COULD still eat a little, which is why I think he was exerting his "control" over ordering us to get him all his favorite things, back to back and constantly! Johnny's was certainly on his list! Then, we drove past his "yay" house that his mom made such an effort to have ready when she had to make that long, sickening trip home with her child to face hospice! I remember Jake's smile when he saw his Chrismaween tree. But, maybe what made me cry the most was seeing the little box on the back of the four wheeler. Todd built that for Jake when he was too weak to even hold his own head up! He rode in it only a few nights before he was to go to heaven! That box just represents the tremendous amount of LOVE that we all had for Jake! It may never come off our four wheeler!!

And to Jake Owen Believer... that enrty is the most touching you have ever made! I just cried and cried to know that you, along with so many others across the country, grew to know and love Jake like your own. It was so obvivous in the Eternal News Star where you captured all the things that I would like to think greeted Jake at his welcome home party in Heaven! If you haven't seen it, scroll down the guestbook and see it, and turn up the volume to hear the "Homesick" song too. This is the song Stanton's mom has used on his site for a while now, so it always reminds me of him too. Of course, at Jake's party, there had to be someone there taking pictures of him, because he wouldn't know what to do without his MO taking pics!! Speaking of pictrues, there are still a few that I have not posted from teh Tuesday night before his death. He was so, so weak, and it was the last time I would ever communicate with him... but he STILL smiled for me when I put a funny hat on him and some funny glasses. I will post those soon, if it is OK with his mom and dad. I would also like to see if Cindy has her "eulogy", aka "Jake's Journey" available to post on this site, so everyone can read her love letter to Jake. It was just perfect!!

Well, I have two boys still up playing on their computers, so I need to do my "auntly" duty, and try to get them to bed. At times, I just say out loud, "I miss Jake." Don will say something like, "oh, ya think?!" He says it sarcastically, but I just don't know what else to say. The hurt is suddenly so deep...and I just miss him!! That is all I know to say.

Please continue to pray for the family, particularly Staci and Don and the boys. I think the hardest days are yet to come! I will continue to update as there will be strong emotions and memories, as well as hopefully inspiring stories in the upcoming weeks.

Check in on a cool kid with hepatoblastoma, named Matty, who had his arm amputated yesterday. He is brave, and we are hoping beyond hope that he can beat this nasty cancer. www.caringbridge.org/visit/matty

Thanks for continuing to encourage. We read every single entry. I have information about meeting a few Believers in Cedar Park, TX, today, at Mrs. Jane Jones's house. I want to be in a happier place to tell you about it, so I will save it for another day. MO

Thursday, October 12, 2006 11:39 AM CDT

Another day into the trip, and we are really having a relaxing time. It is almost noon, and we still haven’t received a call from either of the other rooms to see what the plans of the day are. I wouldn’t dare call them! Yesterday, Don and Staci ordered up room service for breakfast in bed. They also rented a movie and just lay around and watch TV. With the mixing meds, feeds, fluids, IVs, etc…there was not much time for anything like that in the past year. In fact, I remember commenting EARLY in Jake’s diagnosis that there was no longer any significance to a weekend. Our weekends were only to travel or to continue the week’s routine of going in for meds/chemo in the medicine room. I speak for EVERYONE when I say that any of us would choose to do that forever and ever if that had been God’s will. So, don’t think I am complaining! THat was NO sacrifice...ONLY a blessing!

Jin is the “best winner”, getting to have both the big boys in her hotel room for the week. Someone commented on the number of meds in the picture of the slideshow. Well, that was just a drop in the bucket. He also had feeds 24 hours a day hooked up to him and fluids at night. He toted an IV pole with him everywhere, and those particular meds in the pic were the twice a days, I believe. There were other meds Jake needed that were kept in the fridge and didn’t make the pic. So, yea, that baby sustained a LOT!

I love how openly we are all able to speak of Jake and not necessarily boo hoo. In fact, sometimes, we just grin at his precious memory. Now, there are times that each of us have our own meltdowns… and they tend to come at strange times. Jin saw a Lightinin’ McQueen poster yesterday, advertising Cars, and just lost it. Staci said she had a similar response when she saw that Curious George was coming out on DVD. Jake really liked that movie! I had a weird emotional struggle when we were in the IMAX theater yesterday, watching Wild Safari. You know how sometimes, one thing makes you think of another, then that leads to another, then….. well, it was a strange train of thoughts, but I ended up removing my 3D glasses to wipe my tears. Staci says her hardest time right now is trying to go to sleep. I cannot imagine! Jake was beside her every night for 4 years, almost always with a hand up her or Don’s sleeve.

The boys are doing pretty well so far. They hear us all talking about Jake so openly and often without tears, so I think they are realizing that is OK. They saw a four wheeler yesterday and said, “Jake would love that!” And, Hunter has pointed out “Jake-sized” things the whole trip. “Jake size” is anything that is miniature…. Like a small bottle coke vs. the usual size. Look around… there are LOTS of examples of Jake-size things if you pay attention.

When I got my camera bag out, there were Jake’s favorite gums inside. I said, “Staci, look at this.” She said, “oh, yea, check out MY purse.” And as she started “cleaning” it out, I said, “Yea, you got me beat there.” She whipped out this crazy little plastic cow that pooped candy out. She bought Jake that at one of their last shopping trips. (If you are new to this site, please understand that our family has a kind of sick humor!) Then, she had his strawberry gum, and finally there was his wallet with money still in it. That is money that will NEVER be spent.

I, for one, am LOVING all the stories about how Jake is reminding people of his little life. So, as they continue to happen, continue to post. It is so nice to hear how he continues to have an impact on people everywhere. There have been a couple of references to “pay it forward” by doing a random act of kindness in Jake’s honor. Well, anyone who was at the service knows that Staci requested this on the back of the program. She also asked that when you do something nice for someone else (and preferably asking them to pass on the kindness to someone ELSE in Jake’s honor), that you write the story and send it to her.

Raborn Family
“Pay it Forward”
104 West Standard Reed
West Monroe, LA 71291

Ok, well SURELY we will be convening for lunch soon! I have made the executive decision to call them now. Wish me luck!

Mo

Wednesday, October 11, 2006 11:12 AM CDT

Well, we finally made it to San Antonio. We are staying in the coolest hotel. It is overlooking the Riverwalk, and is an old building , furnished in a very mod fashion. Naturally, we think about Jake all the time. We have an unspoken agreement to bring his name up and remember him at any time, and engage all around to join! It seems to bring more comfort than sadness. For instance, on the way down here, Staci and Don pull up to us on the interstate, and Staci motions for Todd to roll down his window. She pumps her arm a couple of times, then chunks a walkie talkie into his window while going about 75mph! Impressive! Then, all the way, we would say things like, “Look, ‘hairplane’ just ahead.” And Staci would walkie talkie back, “Roger that.” Then, it would be “Breaker, breaker 1-9… M&M machines on the right” or “’Yay’ house on the left.” (that implies good Halloween decorations, remember?) A funny one was when Hunter contacted his mom to see if the things he saw on the right, in a pasture, were “longhorns”. He has been wanting to see some. Todd told him, “well, Hunter, a good clue that you are seeing a longhorn is that they have HORNS! What you are seeing are COWS!” Pretty funny… but maybe you had to be there. We were walking along the Riverwalk this evening and we would make references to Jake’s favorite show by saying, “I like that restaurant. That’s a Niiiiice restaurant.” (Remember when Donkey is giving false praise to Shrek about his swamp land? He says, “that’s a ‘niiiiiice boulder.’” We all just grin when we use Jakeisms along the trip. Don had a little “meltdown” this evening, and I reminded him this is just one of many to come. That boy just meant the world to so many people. He had a strong impact on us (and the world), so being sad about not having him with us is just natural.

We had a fun dinner, eating at a place called Dick’s. Upon arriving, the hostess makes sure you understand that it is a concept eatery, and the wait staff purposely uses sarcasm, so get ready. It was a HOOT! One time, Hayden asked for a refill, and because he didn’t say, “please”, he was yanked up and made to go with the waitress to make his own coke. He was returned to the table being carried by two people, one at his shoulders, and one at his legs. Three of us got hats made for us. Crude, yes, but funny, you bet! Hunter’s said, “I play with naked Barbies”. Mine said, “Easier than community college.” (sorry Kim !!) Others had “Viagra saved my marriage” and “I used to be a spice girl…. OLD spice.” “I am wearing a thong.” And “I like to poot in the bed.” And these were some of the tamer ones! At this place, the waitress would just throw the menus down on the table in front of you, and tell you to “shut up” when she was trying to tell you about the specials. I went up to the waitress privately after our dinner and told her how great it was to see the boys and their mom and Don laughing. I explained the situation, and she was so grateful to have had the opportunity to contribute, in her unique role, tonight!

As a matter of fact, to the one who asked, both Staci and I are KD’s! AOT! And, I feel it necessary to say, “hello” to Miriam (*AND Beatrice) in Spain! I hope to visit again soon. One other sidebar… did Jakedog get the costumes I sent him?

A few revelations from Sunday are as follows…
1. I was thrilled to read that Kim Cox also saw the figure of the angel in the clouds over the cemetery when turning off the interstate and entering Roselawn. I called her today, and said, “I am so glad that my view was validated by your seeing it too.” I was telling Dad and Rita when we turned down the road that I saw it, then frantically looked for the camera to document it. I couldn’t get the camera in time to take the pic before the pine trees got in the way!! It was really awesome. I mean a perfect angel shape, with a dim round sun being the head, big bold smoky gray wings and a body beneath. It was so cool!
2. Cindy told me she was talking to one of our good friends, Linda Lou today, and she relayed a neat story. Linda Lou was talking to her two boys about the service. She was asking them about their favorite parts of the service. Ford, 10, said he liked the part about Jake playing with his McDonald’s playset, and taking everyone’s order. If we ordered a happy meal or a cheeseburger or such, Jake would say, “I am sorry, we are not serving breakfast anymore.” Too much fast food, I suppose! Then, Samuel, 13, said, he liked the part where Staci would tell Jake that she loved him all the way to the moon and he would reply and “I love you all the way back.” When Linda Lou got to the junior high school, she dropped Samuel off and told him, “I love you all the way to the moon” when he got out of the van. He stopped and turned and said, “And I love you all the way back.”

Our little man’s legacy is alive and well!!

MO

Tuesday, October 10, 2006 0:30 AM CDT

WOwwweee... what a PERFECT send off for our precious angel. I was overwhelmed by the number of BELIEVERS who drove in from Memphis, Dallas, Cedar Park (Hey, Jane!), and Houston, and other far away places, to come and celebrate Jake's life. Then, to see the largest sanctuary in our city packed with local supporters... wow... just plain amazing. I will probably take another opportunity on another time to give more details, but let me tell you...anyone who didn't know Jake before the service should certainly know all about him and his life after it. His little pictures were plastered everywhere. Miss Crystal, one of Jin's best friends, and her "committee" from Drew School, made 18"x24" posters of Jake that were out in the yard of the church for people to see when they were walking up to visitation. When the visitors went from the church to the cemetery, the same posters lined the entrance all the way to Jake's special resting place! Then, the balloons! We used the one-of-a-kind balloons printed with JAKE and BELIEVE to decorate the tops of the easels that held the sweet pics of Jake and his mom and dad atop the stage. Don nearly had a heart attack when he saw the balloons being released at the church, because he thought these were supposed to be the ones to be released at graveside. But, noooooo, there was a whole different balloon committee for that one! Thanks to Shea Smalling and Eddie and Bonnie's sunday school class at North Monroe Baptist for organizing the tent, balloons, cute curly ribbon (shea, you KNEW it would matter, didn't you?!), etc. Misti Caples and Kristin Thompson, thank you for organizing the balloons at the church along with our "sister friends" from Cedar Crest! If I try to thank everyone, I will DEFINITELY leave someone out, so I am sorry about that! Jake's plot is number 11. (remember, 11:11, my "special" number? cool, huh?) Staci knew it was the right spot when she saw it. It is in a shady little spot right by a wooded area that will never be cleared. Mom and Dad have reservations right beside him. Don on the side he sleeps and Staci on the other. There is a beautiful view of the three crosses, representing the reason we have hope to see him again! So appropriate.

Words cannot express the gratitude Staci and Don and the rest of the family has for the people who spoke and sang in the service. Cindy Foust, my best friend, and a special friend of Jake, gave the eulogy. She decided "eulogy" was a little formal, so she called it "Jake's JOurney." Saturday night after visitation, she came over to Staci and Don's house where the extended family and some close friends were rehashing funny stories of Jake. It was so awesome to just remember Jake and honor him with laughter and happy memories. Cindy took notes on the stories shared and then compiled them very eloquently into a beautiful love story, really, to Jake and the family. Cindy lost her beautiful 2 year old son, Sammy, a few years ago, and we KNEW this would be difficult for her. She told me she felt the Holy Spirit telling her she could do it. She said she couldn't do it for just anyone... but she COULD do it for Jake. And she was right... it was PERFECT! Just like so many of you have written in guestbook entries, we went from laughing to crying, then back to laughing. Cindy, thank you from the bottom of our hearts.

I think "Bubba Greg" hit the nail on the head with "Why We Believe". I have had several people email me personally over the past year and tell me that they were saved and had received Christ as their savior BECAUSE of the Belief they had witnessed in Jake's life. Dude, can it get any cooler than that? Bro. Greg spoke of the POWER and the PRESENCE of the LORD throughout Jake's journey. Jake could not have gone through all he did, then be up on a four wheeler, smiling, laughing, and LIVING without the POWER of God. We could not have accepted Jake's passing without the PEACE only supplied by the grace of God. Truly, although our hearts are BROKEN, there is definitely an underlying PEACE. On the afternoon Jake died, Bro. Greg came by to support the family. I told him, as we stood outside, watching Hunter and Hayden playing football with the neighborhood kids, "Isn't that just a beautiful sight?!" Only an hour or so before, I could hear Hunter wailing in his mom and dad's room as he watched Jake leave this earth. Hayden had been more the quiet and internalizing type. Then, to see them out there playing and just knowing that they were "OK", was so reassuring. Anyone at visitation know that that sister of mine, and my brother in law too, were being totally undergirded by love and prayer. I don't think a tear was shed during visitation. That is not to say there haven't been MANY, but GOD's provisions allowed them to stand and receive the MANY, MANY visitors graciously. That was the presence of the LORD!

Polly, you had never even heard, "Jesus, I Heard You Had a Big House", yet found the music and sang it like an old pro! You handled the "musical portion" of the service so well. Thank you for singing Jake's favorites, especially "Rock Baby" (that is what Jake called it... and when he was heading to surgery or if he was uncomfortable, that is what his dad would sing to him.), with such strength. I know that was hard to do! Also, you all should have seen a whole congregation of adults, standing and doing the hand motions to "This Little Light of Mine" and "I'm in the Lord's Army". I mean complete with "Won't let Satan "phhhh" it out" and "Hide it under a bushel... NO!" Really cool. You can see a little snippet of the service by going to www.KNOE.com. Actually, I don't know if it is all caps or not. Try it both ways! Staci and Don's St. Jude families were in a special section. The St. Jude moms came down front and led the "marching in the infantry, riding in the calvary, and shooting the artillery" for the rest of the crowd.

Then, there was Don's tribute. How in the world did he make it through that one? He did beautifully! It was really a love letter to his two stepsons and to his wife. Then, he made his own video with the song, "He's my son", and sent a little message to Staci from Jake on the screen. It was quite touching. Don, I am so proud of you!

It was pretty unbelievable that the ending video which had about 100 pictures had no duplicates of the ones Don used, and we had never discussed this! Thank you, Jessi, for helping so much with the video. Thank you for understanding for the last two years how important my pictures were to me, and for protecting them like they were gold! I cannot thank you enough.

There is so much more to say, but I think I will stop for tonight. We are in Temple, TX. tonight. Last night, we were just discussing where might be a good place for Staci and Don and the boys to get away for a few days. I think Todd would have strapped himself to the bumper if they didn't say we could go too. We promised to come along as "babysitters" so they could get some alone time as they needed it. We have found opportunities all along the way to work in gestures to honor Jake's memory. When we stopped to eat, Don signed the "merchant's" credit card statement, then took the one for the "customer" and put four little marks on it. Jake always wanted to sign the ticket himself! We sure do miss that little ball of fire. Things will never be the same.... but our family loves each other, and we will stick together! Aunt Marina was there bright and early this morning to continue her mission of maintaining order in the house... what a load off! Eddie may still be sleeping on their couch! He was the "protector" during the last week or so. He would sleep on the couch every night, just in case his little brother needed him... for ANYTHING!" Usually, Eddie and I were the last to go to bed, because it just seemed to give us security to know we were all under one roof. Todd and I cannot thank Staci and Don enough for sharing Jake with us! Not having children, I have always felt like we are just all one big family (and I mean "immediate" family.) Right now, Hayden is in bed with me, Hunter is in the room with Jin, and we FINALLY ran Staci and Don out of our room... Just kidding!

We are heading to San Antonio tomorrow. Golf for the guys, massage and SLEEP for Staci, and amusement parks for the "big boys". Jin and I are going to be the babysitters, I imagine! Angel Denise called ahead and scheduled massages for me, Jin, and Staci IN OUR ROOMS this week! How sweeeeeet is that?! Thank you, Denise.

Just continue to pray for Staci, DOn and the boys. Memories bombard them. Staci has Jake's special pillow along for the trip. I just wish he was in that carseat, wearing his headphones, and screaming for mom to "turn it up!" Until we meet him again.....

MO

Friday, October 6, 2006 3:06 PM CDT

Jake Owen Raborn, age 4, of West Monroe, earned his Angel Wings, at his home, surrounded by his beloved family on Thursday, October 5, 2006. A Celebration Service to honor Jake’s brilliant life will be held Sunday, October 8, 2006 at 2:30 p.m. at First West Church with Bro. Greg Clark and Rev. W.A. “Dub” Massey officiating. Visitation will be held Saturday, October 7, 2006 at Cedar Crest Baptist Church from 5:00 p.m. to 8:00 p.m. under the direction of Mulhearn Funeral Home. Interment will be at Roselawn Memorial Gardens.

Jake was preceded in death by his grandmother, Mrs. Gloria Raborn and his great-grandmother, Mrs. Billie Massey.

Jake’s family BELIEVES that our Heavenly Father could not have put a more beautiful, courageous soul on this earth than our sweet “Baby Jake”. Jake’s life taught us many things, and the legacy he left us to cherish has forever changed our lives. To witness the courageous battle Jake gallantly fought for 2 ½ years is nothing short of a miracle on this earth. How we treasure those days, although some dark, as our precious Jake battled to overcome so much, yet complained little and touched everyone he met with his brilliant smile. For a child so young, our beautiful “blue-eyed” Jake was wise beyond his years, and his physical struggles did nothing to hamper the spirit he used to touch people’s lives across the world. Our precious baby was not blessed with years of life, but he was blessed with “life” in the years he was here. What an inspiration he has been to his parents, his beloved brothers, his adoring family and the legions of “fans” he created as Jake taught us to BELIEVE that we must live our lives with the same determination, perseverance, and zest that he did. For now, our hearts are broken and our lives are irrevocably changed, but we BELIEVE we will be with our sweet baby again, and that comfort will see us through the days to come. Thank you sweet Jake for showing us that life is about the simple things…a good M&M, watching LSU with your family, a dirt bike ride with the wind in your “hair” and a good snuggle with your parents…we BELIEVE.

Our sweet baby leaves to cherish his memories, his parents Don and Staci Raborn, his beloved brothers, Hunter Pardue and Hayden Pardue, his grandparents Jinnie Craig, Larry and Rita Massey, and Red and Crawford Raborn; great-grandparents Dub and Shelia Massey; aunts and uncles, Todd and Melanie Massey Groves, Eddie and Marina Raborn, and Chris and Bonnie Raborn Eubanks; cousins, Madison, Jordan and Tucker Raborn and Masie and Maggie Eubanks.

In lieu of flowers, Jake’s family would like for donations to be made to the “greatest place on earth”, St. Jude Children’s Research Hospital or caringbridge.org.

Pallbearers will be Hunter Pardue, Hayden Pardue, Todd Groves, Eddie Raborn, Madison Raborn, Chris Eubanks, Clint Perodeau and Johnnye Ford.

Honorary pallbearers will be Karl Kaufman, Jeff Haynes, Todd Pierce, Shad Green, Dwayne Barnhill, Mike Wallace and Mike Bass.

Jake’s family would like to say a very special thank-you to the many, many family and friends who have supported them through the last two and a half years. That support gave us much comfort and we will always be grateful.

Please visit www.caringbridge.org/la/jakeowen to read about Jake’s miraculous journey.

ALWAYS BELIEVE!

Friday, October 6, 2006 12:22 AM CDT

Life Celebration Services for our little hero, Jake Owen Raborn, will be...
Visitation 5:00 to 8:00 pm , Saturday,at Cedar Crest Baptist Church in West Monroe
The celebration of Jake's life will be held, Sunday, at 2:30pm at First Baptist Church of West Monroe.

Please continue to pray for peace for Don and Staci.
Jake's Aunt Bonnie

Thursday, October 5, 2006 3:28 PM CDT

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

There is no more pain for him.

He fought the most amazing battle.

We always believed in him.

BELIEVED,
Don & Staci

Wednesday, October 4, 2006 10:26 PM CDT

Thursday morning 11:34am
Ilooked outside and saw people with pitchforks and torches and thought, "ya know, I should update!" So... here it is.

Jake is sleeping peacefully. There has been little change since yesterday. His blood pressure is 70/38. This is what is was last night too. His respirations grew a little more shallow early morning hours, and may still be a little that way, but he does not seem to be in any distress. He is not on any excessive pain meds that would make him this lethargic, so it is actually a change in mentation or conscious level that is making him sleep.

The pallet party went well last night. The boys got huge, foam-filled beanbags, called Love Sacs, for Christmas last year which served as extra beds for adults last night. There were people snoozing everywhere! Many are still here this morning. Some went to work, but will be checking back in soon enough. Nurses, Marla and Shannon, spent the night, and although they are greasy and smell this morning (jussssst kidding, guys), they are still here with us. They are here for the duration. Or until he is healed and we give them their walking papers!

It is peaceful in this house, and soothing to have everyone so tightly bonded by family ties and even moreso by this perfect little angel named Jake! I will update more if anything changes. MO

P.S. I hope to get the slideshow changed this evening, so be on the lookout. MO


Thursday 1:10 AM
Good Morning,
Everyone here at West Standard Reed Road seems to be resting, Baby Jake is asleep...Don comes out of their bedroom where Jake is sleeping every so often to check on everyone, Staci has not left Baby Jake's side since I have been here (about 4:00 PM Wednesday afternoon).

KEEP PRAYING & BELIEVE!
Uncle Eddie

Quite a scary day for the Raborns! The hospice nurses have been here at Jake's house since early this morning and remain here now. They have only gone out to eat lunch and get more meds. Jake had what they called a "pain crisis" this morning which had him crying with every exhalation. This lasted about three hours or so. Thanks to the nurses and Don, (who also manages meds quite well!), they got the pain under control. Basically, he has not been responsive much at all today. He has slept virtually all day long. The family was notified midday, and the WHOLE crew converged on West Standard Reed Road. It was comforting, I think, to have everyone here on standby for whatever. Everyone is cognizant of the need to stay "out of the way", and Don and Staci pretty well stayed in the bedroom right beside Jake all day long. By this evening, things seem to have settled down a little, medically speaking, and Jake is breathing better and resting well. He is still not alert.

Many of us are just spending the night here. The rest will be a little further down Standard Reed at the Groves household (did anyone know that is my "real" married last name?) That sweet, sweet angel continues to fight. The nurses told me they were really in awe, as they admitted that they had not expected him to make it through the day. Believe me, I was just as surprised by that information as you are. Just last night, we were still taking pictures of Jake in funny glasses and with his new poster of "Super Jake." So, for all the neighbors wondering why there are, like, 20 cars in their front yard, now you know... but it is all good in the hood... Jake is still taking the breath of life! Praise God... we are waiting on the LORD's will. Still hoping and praying for a miracle.

The big boys are handling things in their own special ways. Hunter came up to me to console me when I first got here, and he is being his usual, affectionate self. Hayden has been really quiet and reserved. They had to be removed from school today, so naturally there were some deep discussions regarding why they were being taken home. They are such good kids... so strong and brave. Their little brother must have learned it from them! Even little Daisy, the dog we affectionately call "Crazy Daisy", seems to understand that something is going on. She sat right at the feet of Jake yesterday and almost bit PawPaw when he tried to get near Jake. Isn't it something how dogs seem to understand. Crazy Daisy is also letting people pet her who she normally doesn't allow near her, and is about to lick my lips off. Yes, I try to make her stop, as I agree it is gross, but she just keeps on licking!

Thanks so much, Suzie, for providing dinner tonight. I am sorry I didn't personally get to thank you, but I was in my "hole" organizing scrapbooks. MimMim also made dumplings, homemade bread, and lemon pie. Yummy yummy. Our friends have certainly taken care of our entire family during this homehome time. Thank you West Monroe, church family, and neighbors... you are really appreciated and so, so good to us.

Well, pray for the LORD's will. I am not sure how else to pray at this point. We DO NOT want to see Jake struggle or have another issue with pain. However, we have asked for complete healing since day one, and I don't think there is a reason to doubt it can happen now. Just remember my precious nephew. He is SO LOVED!

Mo

Wednesday, October 4, 2006 0:24 AM CDT

Good evening allof you BELIEVERS. My name is Denise Yates, and I am visiting Little Man Jake as well as the entire magnificent Raborn/Massey clan. And tonight I have been given the enormous honour of being able to update Amazing Jake’s journal. Is life good or what?!

Staci and Don’s home is absolutely beautiful, inside and out. The Happy Christmasween tree is nothing short of AWESOME ~ same goes with all of the other Hallowe’en decorations which include many pumpkin decorations filled with dozens of thousands of M&Ms. Hunter and Hayden are great, loving kids with a flair for playing outdoor football with the neighbourhood kids, dirt biking on trails all around the property, and playing games on the computer. And speaking of computer games..... Hayden was in dire straits to gain some of his computer privileges back today, so he entered into a serious “spell off” with some pretty heavy words which required some tough thinking. Aunt MO, Staci, and one of Staci’s best buddies (Kitty Head) were cheering him on as he spelled each word correctly. He was doing so well at one point that the three “cheerleaders” were deep into “the wave” going ‘round and ‘round the living room. What a hoot! But take note all ye parents ~ the cheering squad method really helped out ~ Hayden won back a whole 55 minutes of computer time!

I have met soooooooo many of this family’s incredible friends, neighbours and family members in the past 24 hours that I’m a wee bit confused as to who is who so I’ll let MO do the updating tomorrow to thank all of the kind, generous people who constantly provide house care, delicious food as well as run many errands. I will, however, tell you that Aunt Mo is more awesome, sweet, loving and kind (and funny!) than you could ever have imagined her to be just by reading her terrific journals over the past couple of years. She is truly a gift from God, she’s opened her loving arms and home to me, and has even got me involved in one of her favorite hobbies..... scrapbooking! I’m about halfway through my first little book which will be of the memories of this wonderful trip to Louisiana.

And then there’s Jake-i-poo. How do I explain what a magical, spiritual child he is? Words really do fail me here. I can tell you how adorable he is, how precious his smiles are, how sweet his voice is, how soft the peach fuzz on his head his, how beautiful his blue eyes are, how precious his darling feet are when I give him foot massages, or how he still smells that sweet baby-smell .......... but there are no words to describe that unmistakably magical aura that surrounds him whenever he is in the room. He is definitely a special baby. Yesterday, when I got to meet him for the first time, he was still quite tired after his drawn-out visit to the hospital on Sunday with his Mom and Dad. He was a little grumpy and whiny, and he only stayed awake for perhaps an hour in the entire day. In that short hour he did manage to nibble at a ham sandwich, eat several M&Ms and chew on some gum. But there weren’t too many smiles to be had, except the time when he donned the cutest witch hat with purple hair to have his picture taken by giggly Aunt MO. (Picture will soon be posted). However, today has been a slightly different story. Jake went from the couch to the bed to the couch to the bed and back to the couch several times, and he stayed awake for longer periods of time. He had many visitors in to see him and he seemed to handle all the noise and fuss like a pro. Best part of all, though, was the fact that I got to see him laugh and smile A LOT! MO got some more pictures of him (soon to be posted also), one of which shows him wearing oversized Mr. Magoo glasses. He ate some more ham sandwich, still lots more M&Ms (I get to feed him the blue ones), and JinJin made him bacon which his munched on pretty well. During the afternoon he did seem quite uncomfortable and was possibly experiencing some pain, so Staci and Don give him some morphine whereupon he became a more relaxed and “happy” little guy. And just before going to bed with his mama and dada, he said to Don, “”Night Dad, I love you.” I think Don’s heart was about to melt into butter.

Well all you BELIEVERS, do keep praying for this most special child and his family. I have not been given any specifics as to what the important 7 are tonight, so I’ll just have to give you some of my very own. Here they are:
1.) Jake’s lungs will clear up of any extra fluid sitting in them
2.) Jake’s appetite will continue to increase so that he will grow a little stronger with each passing day
3.) Jake’s pain, wherever it is, will ease up then disappear completely allowing for those smiles to grow wider and wider
4.) Jake’s tummy will not hurt anymore when he gets his feedings
5.) Staci and Don need some really good rest right now, so let’s pray for more peaceful nights for them
6.) Hunter and Hayden now have their family all together at home once again so let’s pray it stays that way
7.) TOTAL HEALING ON THIS EARTH FOR JAKE OWEN RABORN.

Good night and God bless you all. I have to go now. Mo’s waiting to tuck me into bed.

Denise Yates

Monday, October 2, 2006 9:17 PM CDT

NOt just a whole lot to report here. I would've updated yesterday, but I didn't get to spend much time with Jake before they headed out to LSU for blood. They left around 3:00pm, and when I called to check on them at 8:00pm, hoping to hear they were almost finished, Don said, "We haven't even started yet." He told me he figured at least another 5 hours. Sure enough... they got in around 3:30am. Staci said she thought she may have seen a little surge in his activity level when they were leaving the hospital, but as for today.. not such a good day. He has had a good bit of stomach pain. He has been in bed since around 7:00pm or so. This is really unusual for Jake. I can't say for sure whether he is asleep or not, but he and his dad are in the ol' beddy bye, and I think I can hear Scooby Doo behind the closed doors!

Well, guess who pulled in to town this afternoon. Denise Yates, a faithful Believer and longtime follower of Jake, who drove 25 hours from Canada to meet the Jakester. She will be staying with me and Todd. Staci said, "well, it was so nice of you to drive 25 hours to wash our dishes tongiht." Cindy Foust, home decorator and cook extroidinaire, brought dinner complete with homemade ice cream! Thank you, Cindy. We love you.

The Huckabee and Jones clans brought by some money collected at the dirtbike track this weekend from a "special" race run just for Jake. Thanks for coming by and for thinking of Jake at the track. I promise you, there is not a place in the world that Jake would rather be. He absolutley LOVED going to the "dirtbike track."

Sherry Gonzales, I have to tell you a little story about the cool Tickle Me Extreme Elmo you brought Jake. Staci was showing a group in the den how you "tickle" Elmo's stomach and he starts laughing and doubling over with laughter. You really can't watch the thing without laughing! Well, Hunter thought he, too, would show the group how it worked. However, he was not paying good attention when his mom was activating the toy. He aimed a little low, and might as well have said, "Turn your head and cough, Elmo." Elmo was "tickled" alright! We got a good laugh out of that one. Hunter is a hoot!

Aunt Bonnie and Uncle Eddie came by with the kids to see Jake, but he was already asleep, so they just visited with me,Todd, Denise, Staci, and Veronicia. Oh, and speaking of family... Don wanted to know just exactly WHO gave Aunt Marina the weekend off! Marina, Don is getting a little spoiled to all the cleaning and organizing. P.S. We'll see you tomorrow!!

I wish there was more to report, but he just isn't feeling very well. Pray for Jake's strength and comfort. Of course, don't forget his HEALING!! Hopefully, tomorrow will be better, and I can tell some good ol' Jake stories!!

MO

Monday, October 2, 2006 3:46 AM CDT

We just made it in from Shreveport and we're headed to bed. A bed finally opened up and we made it to LSU-S about 5:30. Jake got blood, platelets, and an anti-fungal medicine. He is the most patient, understanding, and sweetest kid in the world. I love him so much. I'm so lucky to be his father.

Thanks to my cousins who made the trip over from Texas to visit Jake. It was really nice to see them all. Another round of thanks to The Thurmon Family for supper and prizes for Jake.

Off to bed now with my little hero.

Will talk to you soon.

BELIEVE,
Don

Sunday, October 1, 2006 1:58 AM CDT

For starters, there was no hospital visit today. St. Francis North (a local hospital) is not “equipped” to take care of Jake’s needs in a timely manner. Jake was planning to go in for his appointment at 10:00am. By the time they got his blood typed and matched, then, with admission and etc., it would have been an all day affair. The blood would have had to have been ordered from Shreveport, and I suppose shipped over to Monroe. I am only guessing here, but Jake’s blood needs a few extra steps, like irradiating, so maybe this is why it has to come from Shreveport. Staci figures why make it an all nighter when it can be just a half dayer tomorrow. So, they are heading to LSU in Shreveport tomorrow. I figured Jake would be VERY, very puny today without his blood, but he actually did pretty well! He only napped a couple of times. He even made a little outing to the ballpark to watch his brothers play fall baseball. Don said he rode in his stroller (wow.. He is really kinda like a little rag doll, and I am surprised he was willing to try the stroller!), and hung out in the bleachers. Don’t you know he LOVED that. One of Jake’s favorite places was the ballpark! I am so glad he is getting to go there with his bubbas.

As for the yanked out NG tube, Nurse Marla came by to replace it. She was a little nervous about it, because, well, as you can imagine... hospice doesn’t deal with many pediatric patients. She did a FAB job per Staci. I told her on the way out the door, as I was sensing her apprehension, that I would be praying for her. Thank you, LORD, for giving Marla the confidence and skill to replace Jake’s tube, without him even crying! Jake is such a brave and strong little kid!

My mom’s sister, another Aunt Bonnie, brought her brood up from Olla, LA. Hey... whazzup, LaSalle parish... this is your SHOUT OUT!! Kelli, Cherry, Sissy, and Shay all came with her to visit. Jake has been handling all the visitors pretty well. It kinda surprises me, as he is usually not all about new folks. He has not been phased.

Patti Gaskin, one of Staci’s fellow kindergarten teachers, has a talent for making cakes. She made a green, Interstate Batteries, car cake JUST like JJ Yeley’s. It was so cool. JJ and crew, if you are still reading, be watching for a picture of the cake. It is sweet! Also, Mr. Crystal a little yeeha for the pies! We ALL had a pie party tonight, and they are both deeelishous.

Guess what Mr. Man wanted to do at 9:00pm...... He said, “Dad, dirtbike” Don said, “Baby, it is dark outside. We can’t ride dirtbikes right now.” Well, Super Uncle Todd jumped in with a fabulous suggestion. He has been wanting to try out his new invention. The day Jake came home, Todd got out his dusty ol’ tools and built a box to fit on the rack of the back of his four wheeler in which Jake could lie. It was PERFECT. They piled in the pillows and tucked him in his blanket like a little burrito. All you could see was a grinning little face. Don got on his four wheeler and followed Jake and Todd around the yard and down the road. It was perfect! Yessssssss... I took pictures, so be looking for them! Without a doubt, Jake wants for nothing! If he utters it, it is taken care of! He is eating really well. He says, “sandwich”, and within MINUTES, is saying, “Bacon”, then, “gum”, then “More M&M’s”. Last night, it was “I want a hotdog.” Okaaaaaaaaaaaaay... and we were all off to Sonic! He demands food almost non-stop. He is so, so skinny. But, he nibbles on a variety of things with his every waking minute! Praise the LORD! He needs to gain a little weight!

We had a really good visit with Mrs. Ann Davis, her daughter, Polly, and Polly’s husband, Bill. Mrs. Ann had the privilege of foot rubbing tonight. Polly got a chance too. Jake was a good sport, and basically just ordered food throughout the visit. Don and I have a little skit going, where I go to the kitchen and call out the “order’, usually adding, “Make that ‘scattered, smothered and covered’”. Last night, Don said he was really ready for the night cook to show up for his shift. Ooooh, I have a good idea. Staci hates when I do this but I am going to anyway. Allie Rushing sent Staci a little stone engraved with “believe”. Mrs. Ann Davis, from up the road, has a new mosaic table with all kinds of cool stuff to use to make mosaics, stained glass projects, etc. Staci thought she would use the stones from Allie, along with things sent from other people throughout the past couple of years to make a cool collage of Jake. If you see something that is small and could be considered for a mosaic, pick it up for Staci. Mail it to her at the address at the bottom of the home page. (Sorry, Staci, but that would really be cool!)

And speaking of home address... did anyone read where Chemo Angel Denise Yates, who often signs in from both Canada AND Venezuela, was asking for directions. She wrote in the guestbook, “Please, take me seriously.” Well, lo and behold, I get a call from her today, and she says, “Well, I just crossed over the United States border, and I am headed south." Yep... she is making her way to Louisiana. What a hoot. She is determined to meet Jake. How cool is that?! Keep on keeping on, Denise. We have a room for you!

Well, the simple seven really are pretty simple... I would like to just repeat... healing, healing, healing, healing, healing, healing, and healing.... because that is really what we are praying for. Of course, miracle, miracle, miracle... (you get the picture), would also work!

Let’s give it a whirl:
1. Jake will gain weight. He is eating and requesting food constantly. He also still gets feeds in his NG tube. However, the morning of his discharge from ICU, they pulled back on the feeds and found his little belly had not absorbed ANY of the feeding that had gone in. So, pray that his belly does a good job of absorption so he can put on a little weight. He is skin and bones right now, and I think a little more weight may make him a little stronger or at least have a little more energy/stamina.
2. Jake will get stronger. Kinda goes along with prayer request #1, but this one is purely physical strength. Tonight, when I lay down with him in the bed, he wanted to put his hand up my sleeve (aren’t I LUCKY!?). I was on his right side, and he cannot move his right arm at all. He had to pull himself over by pulling on my sleeve with his left hand to use his left hand up the ol’ sleeve for comfort. Honestly, I was surprised he could do it. It was the first time I had seen him do that since the surgery. He does not have good head control, and his head has to be supported like a babies’ when lifting or transferring him. He cannot sit up alone. Specifics: head control, sit alone, and strength for a stronger cough.
3. Jake will show his fighting spirit. There are good days and not so good days with regard to his spirit. I know that baby is just so dang tired, but it surely does our hearts good to see him grin. (I could share a little story about something that made him belly laugh...and he couldn’t stop or catch his breath... last night. It was music to our ears! Let’s just say it involved his dad and the Mexican refried beans... enough information to make a guess?!) Anyway, I am hoping that the blood tomorrow gives him a little surge. It is tough for him to get out words that form sentences or that we can understand. That must be discouraging for him. Most of the time, he refuses to repeat himself when we don’t understand because it just takes too much out of him. Bless his little heart. So, pray for God to just rain down some spunk on that baby. Give him some really, really good days!
4. Jake will be comfortable. He has not complained much of pain. Don and Staci tend to stay AHEAD of his needs. If they think he MAY be getting uncomfortable, they have the option of hitting the “boost” that tends to take the edge off. Praise the LORD for Jake being relatively comfortable. Please pray it stays that way.
5. Don and Staci, Hunter and Hayden... for all the family to know that beyond a shadow of a doubt, Jake is surrounded with as much love, joy, and happiness, as any kid could ever want. I think it is very important to Don and Staci that they are doing every thing possible to keep Jake happy, secure, comfortable, and for him to know how much he is loved! I don’t think there could be anything that could bring more peace to them as that. So pray that God sends them this reassurance and peace. There isn’t much that can compare to seeing Hunter kissing Jake on the head tonight on his way to bed and saying, “I love you, Jake”, and hearing Jake utter back, “I love you.”
6. Now for the big miracles... we are believing in...
Jake’s brain tumors are withering and dying. To have clear brain scans would mean that no medical intervention caused the progress. It would have to come from supernatural healing... it would have to be due to a miracle. Could anything be a better testimony than to go back to St. Jude and see all those who cried as Jake was leaving and tell them the cancer is gone?! Please, God, we beg for Jake’s life. It is our human yearning for him to remain. We pray that this lines up with your will, but we always acknowledge that our ways are not your ways, and our thoughts are not your thoughts.... and that all things work to the good for those who love you. We love you, LORD, and tonight, I ask you to heal Jake. Let his life he a testimony of your power.
7. Jake’s lungs to be healed... there were tumors still there too. We haven’t had a recent AFP, but if we are asking for a miracle, and the docs are finished... what does it matter? We are praying for a complete and total healing of the tumors in his lungs and that his lungs gain strength, not hindered by past surgeries, or the recent damage. LORD, touch Jake’s lungs. Make them strong. Help him breathe better. Make his lungs elastic and pliable and gain capacity for deeper, more life giving breaths. If tumors need to remain, so beit, just let them be assymptomatic and not grow. Again, I ask you to give Jake his life. I believe in YOUR power. I believe in your grace and sovereignty.

Well, I didn’t leave one a prayer request for the bone marrow... but if Jake is touched by the Almighty, he will have perfect bone marrow! It is important that after Jake gets his blood products tomorrow that the bone marrow be efficient in producing more so that Jake can, hopefully, spread out his visits to the hospital to weekly, instead of every few days. It is ridiculous, and you may see me with picket signs, but hospice , nor any home health agency for that matter, can administer blood products in the home. Crazy! It would be so, so, so helpful. Gosh, if they could just type, match, and irradiate it, Don and Staci could actually just keep an icechest out back and do it themselves! They have become quite the little nurses!

Well, I am shooting for Sunday School in the morning, so I gotta check out. Look for new pics early next week. We have been taking some CUTE ones! Thanks for continuing to pray and BELIEVE in Jake...also for encouraging our family! MO

Friday, September 29, 2006 9:08 PM CDT

Well, since I didn’t get to “talk” to you all yesterday, I have two days to describe to you now. I just didn’t think I could pass up the opportunity to read Clint’s sweet words to Jake, Staci, Don, and to all of you!
Yesterday, I personally started my day having Polly do my hair. I must mention that because since Jake got sick, she has refused to accept money for haircuts for me, Todd, Jin, Don, Staci, or the boys. She wrote us a note early in this journey and said she had prayed for a way to help, and it was shown to her that her hairdressing could be her ministry. Two and a half years later, and she has stayed true to her word! If you need hair attention.. Call her at Just Around the Corner in West Monroe.

There were a lot of comments on Jake in the sheet, looking up. I didn’t mention another thing that occurred in ICU the day before discharge that , truthfully, gave me comfort! Jake would look out into space, sort of toward the door, but really more just into thin air. He would just break into the biggest grin. (and his grins were few and far between!) On one occasion, I asked Staci, “Did you see that?” She said, “Yea, and he has been talking to it too.” I think we both suspect an angel. After all, we were asking God to send them there! Cool, huh?

I don’t think there is any way to thank all the people who are helping and visiting and sending goodies every day… but I DO try! Let me say today, HAPPY BIRTHDAY, AUNT MARINA. I told her today that I was sorry that I had failed to go out and get her a gift. She looked down at Jake on the couch and said, “That is all the gift I need!” She has been here the last two days , cleaning out closets and drawers, and best of all, the suitcases that have stayed packed for the past year! They seem to just get fuller and fuller! Thank you, Aunt Marina, for taking an arduous task and handling so well. Jin was with her too, tackling the boys’ closets. Jin is just a permanent fixture here, but I DO need to give her a shout out if I am talking about people helping clean house!

Yesterday evening, TEAM JAKE had a meeting at McGuire Methodist. TEAMS Gus, Corbin, and Allen were also represented. Our area has a representative from ALSAC, the fundraising arm of St. Jude, who actually lives in Dallas. Whitney Morse is our rep. Despite being a Tennessee Vol fan, she is pretty neat. Allen Smith’s dad, Brad, gave a testimony of their journey, leaving a lump in everyone’s throat. However, when Don supplied the video of Jake with Tim McGraw’s “Live Like You Were Dying”, there was hardly a dry eye in the house. Don put this video together probably a year ago to use when he goes to talk to groups about Jake to raise awareness for St. Jude. In light of this week’s events, the words to the song and the pictures were especially poignant. There was an absolute HUSH over the room for about a minute after the video. I don’t think anyone really knew what to say. Karl led a beautiful prayer for Jake….and well, prayer just always makes things better, doesn’t it?! Whitney came over to meet Jake after the meeting. She got a little “LSU is #1” grief, but took it all like a champ. Mishka, Dawn, and Summer (all TEAMJAKErs) also came over, along with Aunt Bonnie and Uncle Eddie. It was a pretty busy day, with lots of visitors. Oh, Whitney said TEAMJAKE leads the COUNTRY in number of members running for a single kid AND amount of money donated! Swwweeeeet!! If you want to be part of a record breaking event, log onto TEAMJAKE, pick a runner, and donate. They all need to get to $500 bucks to get some special bonuses at the race, so just pick a name that looks good to you, then, look up their email address and continue to email and encourage them.

I occasionally take notes as I read the guest book to people I would like to respond. I can’t exactly remember WHY I wrote these down, but there have been SOOOO many to read in the past couple of days, that my mind just gets backed up! First, Denise Y…. I believe the address is on the bottom of Jake’s homepage. We would love for you to swing by… after all, it is just a hop, skip, and a jump from Venezuela! And, as a bonus, Todd and I live on the same street, so you could visit both houses! If you need directions from Venezuela, call me at 318-376-7676. I make that trip all the time! Ha Next, Lisa Bunt, in the UK, I have more like 17,000 pictures of Jake, and Staci has about 3,000 more. I just wanted to clear that up… we are picture fanatics! Jake told me today, “Mo, I don’t want to take any more pictures.” SO, I stopped….. Momentarily!

I failed to mention Eclectica, a scrapbook store that I frequent in Memphis. I just mentioned to Valerie, as I was checking out a week or so ago that I am behind on Jake’s pics, and would really appreciate some help. She had a crop with 20 volunteers organized within a few days. They created a BEAUTIFUL book of Jake’s trip to Disney World. It is absolutely awesome. If any of you read the site, ( and I know a couple of you do, because you have signed in), please know that your time is something that I simply cannot repay you, but know that your donation of time is so, so appreciated.

I didn’t get a chance to say this yesterday, but Todd and I had our TENTH anniversary yesterday! That is newsworthy! Todd had a surprise trip planned for me, and with all that is going on, obviously we were quick to cancel it. Because that was my “gift”, he fessed up that it was going to be to New York. But, you know what… New York will always be there, and there is NOWHERE we would rather have celebrated our 10 years together than right in this den with our precious nephews. I love you, Todd.

The Drew Crew continues to come through with dinners every night. Thanks, Tracey and Crystal for last night’s delivery. And Amy, the Mexican food tonight was the BOMB. Miss Nancy, I have had brownies for breakfast, lunch, and dinner for the past two days. Thanks… and if you don’t want me to look like that dude on the slideshow, I will let you know when I am out! Aunt Starr and Toni also came by to visit. MimMim came by last night and spent some time with Hayden, who is either still feeling kinda puny or is dealing with all the change in his own way… seclusion. She hung out with him in his room, watching Angels in the Outfield. Later, she came in, and Jake was pretty smiley, so I will have some good pics on the next slideshow. She stopped by momentarily this evening, and again hit the jackpot, as he was ready to take a nap, and she had the privilege of rubbing his little feet until he hit the hay.

Thanks to Jennifer Perodeau and young uns who made a special trip to Chik Fil A yesterday, as this was Hayden’s special request. Mrs. Donna Colquit, from across the street, ran an errand for ol MO today too. Mrs. Donna, I am sorry that it was unfruitful. I really appreciate the attempt. Clint, all us dummies have been running back and forth to the dryer to keep his blankies warm constantly since we got home, never thinking “hey, what about a heating blanket!” Thanks for that solution…. Jake loves it! Carmen, we got the generous donation from Tim McGraw and Faith Hill’s fan clubs. Thank everyone from Staci and Don AND Jake! Aunt Bonnie was quick to respond to Jake's request for a soft taco. As ANYONE with half a brain knows... that means TACO BELL. She said, "I am on it." When she walked in the door, I whispered, "Hey, tell her he changed his mind and wants a Mexican Pizza." She ain't no dummmy! She had bought one of those too! Pretty smart girl!

I just about cried yesterday when I took my laptop by a computer joint to see if they could rescue my hard drive. SO far, NOT so good. My journal to Jake, that I write every night, since the beginning of the journey, and is NOT completely backed up, is GONE. Little prayer please, that it is retrieved. It is very personal, and is straight from me to Jake. LOTS of emotion in that file, somewhere in computer land.

Mr. Wayne Petrus, an angel flight pilot, and his wife brought all three boys tees from TP Outdoors. Thanks so muchy. Also, our neighbors, the Huckabees, brought really cool LSU and Rebel jerseys with JAKE on the back. That was really sweet. Paige Miller, thanks for the visit and the M&M’s. Dawn Rushing, as promised, came by to get the laundry. She refrained from dyeing Don’s underwear pink, but I think that would have been a GOOD ONE! Dawn, we appreciate you. You have been faithful to visit and help this family since the beginning! Amy and family, from Arkansas, Staci said to make sure I said thanks for coming down to visit.

OK, as for today, Jake’s labs are a little low, with his hemoglobin and platelets needing transfusions. They are planning a trip to the hospital tomorrow morning. This makes Jake a little tired. There seemed to be fewer smiles and less energy today. However, we stayed out of the den for almost 4 hours today! First, we went on a ride in “Daddy’s Big Truck” to the post office, the bank, and to pick up Hayden from school. When we got home, we sat on the front porch and watched his brothers and neighborhood boys playing football and wrestling. (Pictures to follow!) I DO have to say that Jake ate the WHOLE time! He is going back and forth between ham sandwiches, chip and dip, M&M’s, bacon, and pizza. He just barely nibbles, but we are happy to see that he continually knows what he wants and keeps trying to eat.

The ACTUAL M&M company was contacted about Jake’s affinity for their product, and Jake got a package from them today! Can you believe it? I think he is pretty set on M&M’s for a while! In fact, Staci is about ready to give M&M’s as “parting gifts” because they are swimming in them at this time.

Thanks again to my staff at MMPT. They made me a DVD to “cheer me up”. They knew just the kind of weird humor that would make me laugh. The whole group wore Christmas and Halloween hats and decorations and made a video singing the original song, “Happy Merry Chrismaween”. It says something like, “Happy Merry Chrismaween. You’re the cutest kid we have ever seen. Your Aunt MO, she is our Queeeeeeeeeeen. Happy Merry Chrismaween.” That is just the chorus! You have to see it to believe it! Thanks to all of you. That was a scream, and Jake was happy to see Mr. Karl in the group.

Well, the latest drama is that Jake just pulled his NG tube out. Oooooops. This is a crisis that is going to be postponed until tomorrow morning at the hospital. As for now, nighty night to you all… Ooooooooh, he just requested Maggie Moo's. Now, he is talking MY language! We are off like a dirty shirt!

Keep on BELIEVING in Jake’s HEALING!!

MO

Thursday, September 28, 2006 9:11 PM CDT

--------------------------------------------------------------------------------
I have lots to say about things that happened today...then again, people may say I have lots to say EVERY day! But, this love letter from Clint Perodeau to his best friend, Don, probably needs to reign supreme as the update tonight. Just know that Jake had a better day today than yesterday. He is eating more, sitting up (propped) for longer periods without giving out, and is speaking a wee bit clearer. So, with that, Praise the LORD for every little thang! I will update tomorrow am. MOMO




hey there everyone. I just got back from haveing lunch with Baby Jake. That is if you can call M&M's lunch. His dad and I hammered them. Well really, I hammered them. Ask Jennifer and she'll tell you that sweets aren't safe when I'm around. There are so many M&M's at Jake's house you wouldn't believe. Something else that you wouldn't believe is how great their home looks. I did read where Mo thanked all involved in the decorating and the landscape but ya'll don't understand. The place looked fabulous. Those women gave Jake a Christmasween Tree all done up w/ orange lights and all. Jake smiled today when Don was asking him to show me his Christmasween Tree. So you know that Jake got a huge kick out of it when he first saw it. Don was feeding him a bowl of cereal and Jake asked me for an M&M and let me drop it into his mouth followed by another huge grin. Probably grinning at the fact that he got one that I didn't! The outside of the house was a dead give away as to who had a hand in it. Scott Foust and Co. Need I say more. For any of you that have seen Scott's personal lawn; He's stricken with not a little, but a lot of O.C.D. But my hat's off to him. Especially since that is the last thing that Don and I talked about before I left the hospital on Sunday. He asked me to have someone get his yard straight. Wish I could take the credit. What a wonderful job.
I'd like to say a thing or two to all the great people who sign the guestbook. If any of you for a moment think that your words mean little or that they may never be seen; STOP. As I sat and visited this past weekend in Memphis, every single solitary entry is read. Weather it be Mo or Todd or Jin-Jin. Or by any of the rest of the 30-plus visitors there this weekend. Until this weekend I wasn't quite sure the true meaning of the updates. But let me tell you all, they are the minute to minute inspiration to this family. At every moment someone was asking for a laptop and most of the time rather hastily due to Don and Staci wanting the first available one brought to them. My point is this, Do not stop the outpouring of your support no matter what is to happen. Do not stop the prayers for this family. This family has an extreme heart-felt appreciation for all of you. And they need all the love and prayer that you can throw their way. Appreciated is an understatement.
Thanks to God for allowing me the oppourtunity to be in Memphis this past weekend. The news that came on Friday, Praise God, didn't come to be. Thank you to the doctor that God directed to take as much time as need in weaning Jake from the narcotics so that he'd have the very best chance of breathing on his own. As you see, it worked. since 10:30ish. on Sunday a.m. Jake began breathing for himself and shows no signs of any different. He is an absolute amazement. Such a beautiful child. How absolutely awesome is it that he has made it home. He is at his own house on his own couch watching the big screen and getting anything that his little heart desires. The biggest smile from Jake came from when his Aunt Marina brought him his warm blanket from the dryer. The boy loves a warm blankie. I am off to Wal-Mart after this to try and find him a twin-size electric blankie all his own. My daughter Anna Clair recently bought Jake, all by herself just out of the blue, a pack of purple kool-aid pops for Baby Jake. She'll love taking these to him and maybe can tonite.
I'm for sure that most all of the visitors and family at St. Jude this weekend read the updates daily. And for all of you, thank you for such a terrific showing of support for Jake. I came home telling Jennifer how unbelievable the visit was. As uplifting an experience as I've been a part of in such a long time. There was everything from Polly Norris singing (and of course Mo's antics that brought about extreme laughter) to tears of both joy and sorrow, to handheld group prayer. The only thing that I regret is that my wife and children weren't there too. Had I known all would come together as it did, they would have been. They'll all get to see him at home now and PRAISE GOD for this. I love these people and they love you.
Thank you Jennifer, Polly, and Veronica for letting me be one of the girls this weekend. You guys love Staci like I love Don-Don. How great it is to have friends as true as these two. The kind that are a no-brainer when thinking of friendships. The one's that you've experienced the fabulous to the unspeakable with. And even in times of no contact are still the ones that are etched in our hearts as the "True Friend". The one that is just that; No matter what the circumstance. We are all so very blessed, to have and to be, this kind of friend. Thanks for the ride home and don't forget me on girls-nite. Good luck to you and the baby Jennifer, hope all goes well. Veronica, Polly textd me saying that you indeed found "purer" in a dictionary once you got home. (Polly was winning their Scrabble game and we wouldn't let her use it) But... too late. Time limit for protest has expired. Did you find W in the same book. Doubt it. Thank ya'll.
Sorry to anyone that thinks this is too long. Better be glad that I'm stopping now cause I could go on and on with what this all means in my life. I could have only prayed that this whole situation has touched someone else as it has me. And it has. The evidence is in the Guestbook. Keep 'em coming.
Thank you God for Jake's journey and please continue to use him here on earth. Amen.
Clint

Wednesday, September 27, 2006 11:58 PM CDT

***ATTENTION***
A visitor from St Jude will be at the Team Jake meeting tonight. I know this is late notice, but if you could be there to show your support then this would be great. 6:30 PM at McGuire United Methodist(New Church on Arkansas Road)in West Monroe. Amy Smith will be giving here testimony about her son, St Jude patient, Allen. Don has also prepared a short video of Jake. St Jude representatives have told us that they are amazed at the number of people signed up to run for Jake. I think they are coming to see it for themselves. Please go if possible.

Thank you!!


UPDATE 3:54AM

Jake & I are in the living room watching Scooby-Doo and he is eating a ham sandwich. I might just be the proudest dad in the world. He is so amazing. A night I will never forget.

BELIEVE,
Don




With the “tough one” out of the way, I am on to the next update! Today, praise the LORD, Don and Staci were both able to spend the day with Jake. And, thanks to my awesome staff, I was able to be there too. With Jin all retired and such, she is free every day! So she hung around too. Hayden has really puffy eyes and a stuffy nose. He had fever last night, so he didn’t go to school this morning. Well, we figured it was only a matter of time until we got “the call”! Sure enough, around 9:00am, Hunter was on the phone and needing to come home too! Staci was there straight away! His teachers and principal have been so understanding, and just plain awesome! Actually, Staci took both boys to hte doc today, and she suspects a virus with both of them. They didn’t really seem to hang around in the den with Jake much today. Maybe just a little weird for them. Or maybe they seriously didn’t feel very good. (I just doubted it, ya know... they HAVE to be pretty pumped about having their mom at home!) Jake told his dad he wanted to go riding in “Daddy’s big truck”. Don said we had about 30 minutes before he would need his meds to be rehooked up, or he may have withdrawals (remember he just got off lots of narcotics!). We cruised out to Miss Cindy’s, Mr. Karl’s, and his best friend’s Emma Lou’s... and not even one of them were home. Jake gets pretty worn out quickly. But we ALL know how much Jake likes the wind on his face (as does his Aunt MO!! I won’t have a car without a sun roof, and much prefer the window down to the A/C), so we let the window down and laid back for our glorious 30 minutes. Dad took us to the store and got Jake some more gum.

More balloons were delivered today. His hospice nurses brought a HUGE bouquet, some “lipstick” in several delicious flavors, and a big bag of M&M’s.... looks like they’ll do just fine! Angel Stacey sent balloons too. Jake is really too weak to really enjoy any toys at all. He held onto a little matchbox car for a little while in the car. Also, Leah Huckabee brought a toy dirtbike by, and Jake thought that was pretty cool. Thanks also to Tanner’s mom and sister (sorry, I don’t know your names, only your relationship to Hayden’s teammate! Isn’t that sad?!) for dropping by. The Stones came by too, and we really appreciate your thoughtfulness.

Jake ate a few bites of a Mexican pizza from Taco Bell. He also ate a few pinches of Jin’s sandwich, sipped on a YooHoo, and ate a handful of M&M’s. We tried a Twix, but to tell you how weak he is, he couldn’t bite it. I was like a mama bird, crunching it up a little, then letting him eat it. Is that gross? No... it is LOVE! Jake has found his spot on the couch, and is there most of the day. We hope he starts getting stronger, so he can sit for longer periods, and maybe get more breath to get longer sentences out that we can all understand. Mr. Karl, Jake’s second favorite physical therapist (ha), came by tonight, and let Jake “help” him make balloon animals by helping him stretch out the balloons and holding onto the pump when Mr. Karl pumped up the balloons for his creations. Thanks, Mr. Karl!

Jake had LOTS and lots of visitors this evening. His extended family was all around him! Aunt Marina and Uncle Eddie were there with all their brood. Then, Aunt Bonnie and Uncle Chris, and their two came by too. We took some pictures, but since sweet Miss Jessi came by to help change the slideshow tonight, you will just have to wait for those new pics... also pics of the Happy Merry Chrismoween decorations on their way! He seems to enjoy the company, but he just doesn’t have the energy to engage at all. Bless his little heart. Please add his energy, strength, and spirit to your prayer list. Thanks.

As for the slide show... the first few pics are of Jake in a white blanket. He was cold while he was in the CT scan room waiting for the team to begin the radiofrequency ablation. This was just minutes before he went into the procedure. Isn’t it funny that Don ALWAYS picks the hot pink apron?! Things that make you go hmmmmm...... Then, there are the pics of Staci in high heels. Her weird friends showed up in a Mardi Gras mask, a halo with a wand, and in a sequin crown. All, of course, in an attempt to cheer Staci up. That is what good friends do... humiliate themselves to bring a smile! They decided that Staci walking into the ICU in her pajamas and high heels would cheer up the ICU staff, so they fluffed up her hair, donned a little lip gloss, and Staci hobbled along to the ICU. She actually had to make a pit stop along the way, because her calves were hurting so badly. A long stretch from the Crocs she usually wears. It was the first time in a couple of days that Staci could actually smile. I think we can all understand that! Thanks, girls, for coming to her rescue. The pic of Jin and Jake’s hands were taken while he was on the vent. Staci and Don have always disliked the idea of putting pics on here where Jake looks ‘pitiful”. Believe me, I have one... you should see him on the ventilator with 16 leads all over his head for the EEG. UGH! Anyway, this was a special picture since it shows a close bond between grandson and grandmother, without actually showing the situation he was in at that particular moment. Yep.. Mo has one like it too! The pic of him smiling is later in the day when he was taken off the vent. Isn’t that remarkable?! That boy is soooo tough; and brave!

Well, let me say, it did my heart so good to know how many people are claiming Jake’s miracle and continuing to pray. Spread the word about Jake and grow our network of Believers for more prayers! We are faithful! We are strong! We BELIEVE!

Mo

Tuesday, September 26, 2006 11:32 PM CDT

Hmmmmmm...... how do I say this? Well, let's just start with the positive. Jake has consistently improved with his breathing! This morning, his vital signs were basically perfect! His heart rate was back up above 100, which is more a "normal" for Jake than those 80's he was riding in while on the vent. His blood pressure was just about perfect too. He was managing to keep his O2 sats up to 100 percent without any nasal cannula, extra oxygen or anything. Can you believe how awesome those little lungs are? They have been through quite a ride. You have to realize this was his FIFTH lung procedure! He had three fullout thoracotomies, where they opened his little back up, lifted his shoulder blade, spread his ribs, and massaged his lungs until they felt all the tumors and cut them out. Then, two more ablations, in the span of two months.... and we all know how THIS one turned out! When the anesthesiologist explained to us that the endotracheal tube, which is responsible for keeping oxygen going to Jake while he is out, was full of blood and "flowing blood like a river", well... it couldn't have been a pretty sight. Jake is smiling often, although I would be lying if I didn't admit that between the smiles, are moans and winces. We can't quite tell what it is that hurting him. Staci thinks he may just be "overall miserable". He is not moving his right arm at all. He moves his right leg very little. He is presently unable to change his position at all, and cannot sit up alone. Stroke? Intracranial pressure from all the tumors? Who knows? But, it is what it is!

Now for the reason there was no update for a day or so...
Jake rode onto Standard Reed Road today in a big ol' Rock Star tour bus! He, his mom, and his dad were accompanied by a medical staff, including a personal nurse all the way home. This group is from Florida, and they drove all the way to Memphis to get the MAIN MAN, drove him to Louisiana, and is now on their way back to Florida. (Just pulled out at 11:40ish pm.) Mr. Jakeman was setting new standards as the first kid to ever go home in this style! Most of the time, a kid can only use the air ambulance if the situation is very critical or obviously an emergency. And, the only other mode of transportation is an ambulance, which only allows one parent to ride, and is not all that comfy!!

Well, now I am just going to say it. Tomorrow, Staci and Don will be contacting hospice. The docs at St. Jude told Staci prior to discharging the ventilator that there were just no more treatment options for Jake. As Staci told everybody, she would only cry two times... once when he was diagnosed, and once when told there was nothing else that can be done. And cry she did!! It was an emotionally charged weekend! Even the big boys needed to sleep in very late yesterday, to catch up for all the emotion of the weekend. I would have to get them up and tell them all about the expectations of the day (regarding discharging the vent et.al.), then we would pray together every night, thanking God for another day of letting him live and asking God to be with Jake and all of us as Jake was facing the trial of the next day! Then, in true Jake style, he would defy the odds and come off the ventilator in grand style! Now don't take all this information as a surrender. WE ARE NOT GIVING UP! Prayer, folks... that is all there is. Sunday, Staci and Don made the decision (against doctors' suggestions) to NOT sign the DNR because they felt "he just had too much life in him". When on the vent, and with the sedation decreased, Jake would mouth, "Dada" and "hold me" and smile at his brothers, Jin, and Todd. How in the world could a parent say let him struggle and not draw breath, when the child is as coherent as Jake was! I was so, so , so relieved when they made that decision. Well, Staci has always said, "I will not leave this hospital without my child." and...today, she stayed true to that promise.

Thanks to all the staff at St. Jude who not only took fabulous care of Jake for the past two and a half years, but also followed Jake all the way down to the bus today like he was the Pied Piper. Granny (CNA in ICU who very lovingly took great care of Jake many, many nights), made sure Staci and Don had sandwiches and snacks for the ride. Nurses and doctors gave Staci hugs and well wishes as they left the ICU. If you don't think they care... Don looked all over the hospital today for M&M;s. He came back to ICU and said, "Do ya'll know that this hospital is totally out of plain M&M's?" He could only find peanut. Within 30 minutes, there were 10 bags in Jake's room. "Granny" had her son, who is a local police officer, swing by with a couple of bags. Then, one after another, they were coming in from all corners of the ICU! Don said, "You know, this hospital is totally out of hundred dollar bills?" It didn't work!

For now, Jake is on his own couch with UNBELIEVABLE Halloween decorations on the outside and inside, compliments of Cindy Foust, HOME ARTIST,and her staff, MimMim, Cindy Tatum, and Melinda Hanks. PawPaw and Crawford made sure the garage was presentable, while Pops and Nana were on pumpkin duty. Even Uncle Todd helped with the fresh pinestraw and mum-mage. Aunt Marina and some Drew sunshiners, Amy and Julie, delivered groceries, so Staci and Don can sit back and chill with Jake without need for anything. Dinner was supplied by many... Ann Davis, Cindy Tatum and Melinda Hanks, and Patti Gaskin and "Drew Crew". There is actually a menu for the week posted on the fridge for meals for the rest of the week from Staci's former teacher buddies. Don says, "I've been looking around, I see the dinner schedule, but I don't see a laundry schedule." HA Don't look at ME!

Cindy and "staff", let me tell you... the bus driver made the turn onto West Standard Reed and asked, "Now, which one is yours?" Staci said, "It is the one with all the blinking lights." She went on to say, "Jake has always been a big fan of Christmas decorations!" He said, "Very cool!" When Staci walked in, all she could say was, "Awwwwww!" Don was carrying a very limp Jake, and said, "Jake, you have a Christmas tree decorated with Halloween." He said, "Where?" His dad spun around so he could see it, and he had the biggest ol' grin on his face. I tried to get a picture of it, but his head was buried in his dad's chest. Moral of the story... it was worth ALL the effort!

Ok, so I am going to hang with my little precious. He is eating chicken salad sandwich (Thanks Paula and the Cancer Foundation League for the "leftovers") and chocolate milk. Can you believe that? What a trooper.

Please pray for Jake's miracle. Brain tumors, be GONE! Pray for a renewal of his strength too. He is the most patient and sweet kid I have ever known. He just smiles so big.... STILL! He waits patiently to be moved or for someone to fix his covers, or for us to change him. Just so precious!!

Gotta go... Todd and I have to figure out where we will be sleeping from now on! We may never leave their house!! Jusssssttt kidding, Don.

MO

Tuesday, September 26, 2006 2:43 PM CDT

Jake is doing good. I'm on my way to find him a bag of M & M's right now.

We will update later on again tonight but I was just dropping by to let you know he is doing fine.

Will talk to you soon.

BELIEVE,
Don

Monday, September 25, 2006 12:12 AM CDT

Jake is resting peacefully right now. He is cuddled up next to his mother which is right where he needs to be. He was up most of the night asking for M & M's but he is not cleared to eat yet. He is so patient and understanding when he can't eat or drink.

Jake is off of oxygen support completely. His oxygen sats are holding at 99-100 which is unbelievable. He had is catheter pulled this morning also. He has not complained very much of anything hurting. My little warrior continues to amaze me with his strength and courage.

We will continue to update you as things unfold. We are not sure of what will happen next but we will keep you informed.

EAT AT CHILI'S. ALL PROFITS TO ST. JUDE.

BELIEVE,
Don

Sunday, September 24, 2006 9:32 AM CDT

6:07pm
Awwweeee... I just went in to visit with my precious nephew, and he was smiling and trying to speak. I mean, big ol' grins! I said, "Well, hello... we have been waiting for you to wake up!" He is watching the Incredibles and eating ice chips. Because the docs wanted every airway open this morning, the NG tube was removed from his nose. Well, it is medicine time, so it has to go back in. I decided to leave the room since I know it will be a little traumatic. His nurse (who by the way is wearing a Jake Raborn Believe tee shirt today) called in teh respiratory therapist to be on stand by "in case he has a bronchospasm." Ugh. Can't anything just be normal? Jake has poor breath support to allow him to get out words on his weak exhalations. But, he DID say, "MO...... Todd." I have come to the parent room to get his Uncle Todd who he thinks is the Bomb! Hayden, mom and dad are all in there with him right now. We are giving them a little time to finish and will be going to enjoy The Incredibles.... again! Praise he LORD. Mo

2:20pm
Still looking good. I was in the room when his JinJin came in, and got to see a big white toothed smile creep across his little face. He was calling, "Maaaammaaaa", then wincing. It seemed as if he was in some pain, but I don't know really where. Of course he just awoke from a 10 day hibernation after a very traumatic near death experience in surgery two Thursdays ago. I would have to think his throat may be hurting from a tube down it for so long. Hunter said when he walked in and said, "Hey, Bubba", that Jake gave him a big grin too. He didn't smile at me, so I will be talking to him about that soon enough! Staci just sent out word that she doesn't want any other visitors for a while, because the docs are a little concerned with his blood pressure. Uncle Chris (Bonnie's husband) just came in and told me that, so I don't know if the pressure is high or low. Usually, stimulation causes it to go up, so that would be my guess. Anyway, stop and pray for a leveling out of all vital signs, please. Bonnie, Chris, and family are about to head out. PawPaw and Crawford are right behind them. Pops and Nana Massey are on the road, as well as Jin's friends from school, JOhnnye and Paula, and Poppa and Sheila. Lots of our crew on a long road home right now! Staci wants the two big boys to stay a little longer, so Todd, Jin, and I will be hanging around tonight. As if I needed an excuse! Let me tell you about friendship. When Jake had his "crash" on Wednesday, and I posted the emergency on the website, my good friend, Mishka, who used to work for me but moved to Colorado and only recently to Arkansas, called my office and told my office manager that she was packing at that very moment and would be there by morning. That is a hard gift to ever repay! Her generosity in coming to take over my patients allowed me to be with my family and Jake in the most critical time we have ever faced. Mishka, I appreciate you more than you can ever know. (She has offered to stay this week as well). Jay, thank you for sharing your wife! And Miss Wanda, you are welcome, as I am sure you are getting some love-love time with your precious Samuel. My staff is unbelievable. They all circled around and had prayer on Wednesday before I left, then went to work organizing the schedule to cover the many, many patients scheduled in the next few days. Guys, I am so blessed to have you! I love every single one of you! I assure you, Staci appreciates you too. It means her boys get to spend another day with their brother and with her.

Well, I need to get back upstairs and get the blood pressure scoop. More info as I get it. He is off the vent, but I wouldn't say really homefree just yet, as he remains very weak. Please click back on the journal history and reclaim Psalm 91 for Jake. It is powerful. As you read it, claim it with power! And claim it for Jake. Thanks for keeping up with us. Mo


11:43am
Jake has a little nasal cannula in his nose and is breathing all on his own. There was obviously no reason to worry about the stupid DNR papers this morning because the LORD was ready to roll. Please be sure and say a prayer of praise and thanksgiving because we will NOT be victim to fogetting or not acknoweledging from whom this MIRACLE came! His nose is flaring a little as he tries to pull the air, but remains weak. He has not spoken to anyone yet, but his heartrate went up when Jin was in the room and talking to him. Staci had to remind him to calm down, and he responded. Staci's friends, Veronicia, Polly, and Jennifer are hitting the road. Don's best friend, Clint, is also heading out. Bubba Greg is on his way down I55 toward Jackson, hopefully to make the evening service. Also, Jolly and Tim Brandon, who got up at 3:00am to be here for the big event, are now turning right around and heading home. The big crew is dissipating, but thankfully, that is because Jake is looking so good! One of the CNA's that works nights, and who only refers to herself as "Granny" or "Jake's Granny" when she is taking care of him (whether he is alert or out) sent word down to the patient services to send up a food cart. It came, full of drinks, donuts, and bagels. She told them to keep it replenished! How sweet is that?! These people take such good care of the Raborn clan! They love Jake like their own. Nurse Terri called to check on Mr. Man, right in the middle of the songfest. Then, Nurse Crazy came down from the bone marrow floor to check on Jake, and quite honestly, to see the circus that is the Raborns/Masseys! One last thing, thanks to the Holubecks... we got the cookies and want you to know how much we appreciate your thoughtfulness. Wow... people are so good!

We will continue to keep you posted. The nurses think Jake may be in a little pain, and he is no longer calm and still, but more aggrevated and squirmy. So, Staci and Don have ceased the onslaught of visitors.

Later... Mo

P.S. Yes, Zack, you can use the Hummer for Homecoming.... we will have to establish a few ground rules, and it will need a good bath! Thank you for checking on Jake all morning! You are a cool dude! Mo

Well, in a matter of minutes, the big nasty tube will be coming out of Jake’s mouth. The family has all been in to visit him, although Staci and Don kinda hate that part because it always indicates “something’s up!” when people start coming in to visit. Staci and Don just had a conference with Jake’s docs, and because he is just so full of life, a DNR was not signed. He is saying, “dada” over the vent tube. As I asked him to take a deep breath, I saw him stop and really try to calm himself down with an obvious deep breath. He also tried to cough when I told him that would help him breathe better. The ventilator is actually not assisting Jake in breathing at all. He is totally breathing on his own, and is taking over 40 breaths per minute!! But, he is in the middle of a progression, where he is on CPAP which means the vent tube gives a little “push” of pressure so that when he inspires, the extra pressure help, pushes air into his lungs and helps his alveoli stay open. As I type, they are taking off the CPAP and transferring him to an air support mask, then maybe a nasal cannula, dependent on his tolerance to that. So, PRAISE THE LORD... we KNOW he is doing well at this time. We KNOW the docs have been resolute in their treatment decisions. We KNOW he is in the arms of the LORD.

We just held prayer with the 30 people who are here with us. The presence of the LORD is certainly in this place.... and it is well with my soul... oh don’t make me start singing up in this waiting room!!

Ok, we will keep you posted. MO

9:53 AM
Uncle Don just stepped outside of Jakes door and gave the thumbs up sign. The tube is gone and so far so good. We remain in the waiting room singing praise songs. GO JAKE!!! GO GOD!!!

Jake's cousin,Jordan (Eddie's 12 year old daughter)

Saturday, September 23, 2006 10:11 AM CDT

Sunday, Sept. 23, 6:40pm
You are hearing from a very relieved aunt I awoke today nauseated and just plain in a funk I was trying to call it anything but “sad”. I had my orders, after all. Staci seemed just about comatose I think she was probably avoiding waking up We had a TON of people come up to support. There is a two person maximum rule in the ICU rooms, which we totally ignored Jake has been loved, loved, loved all day long... love him in the mornin, love him in the noon time, love him, love him, love him when the sun goes down. Know that song? He has gripped our fingers with his tiny, weak little hands. He has opened his eyes as if to try and talk to us with them. Staci has to tell him that he can rest if he needs to, since he seems to try and push himself to stay awake and look around. He is totally off paralytics, actually since early hours of the morning. His sedation meds have been weaned drastically. The doc (DR. MORRISON ), is planning to wean him from the rest of the sedation meds this evening around 8:00 or 9:00pm. He has asked for minimal stimulation since Jake will be changed to a med that is typically used for short term sedation (i.e. MRI’s and the such) and as soon as it wears off (within an hour or so), Jake will be totally without sedation. Just lying there on the ventilator Our hope is that he starts figuring out how to breathe They will discontinue the vent tomorrow morning. He is breathing above the vent... for instance, if the vent rate is set at 10 , and Jake is taking 25 breaths, we can know he is breathing 15 breaths on his own. He is doing this now. However, the pressure of his breaths is weak. We are so happy that he is breathing, but we really need the prayers to be focused on his breaths being strong and sufficient. He also seems so weak, physically, that he is not moving much at all, although he should be since he is off the paralytics and is much lower on the sedation. So, although I will mention it later in the Simple 7, we want to see him stronger and moving a little too

Everyone around here is doing a lot of napping I don’t think there was much sleeping last night, and some of these crazy people drove through the night to get here Aunt Bonnie (yes... that is Don’s sister and Chris’s wife For clarification) said she has slept 8 hours in the last three days. She and Uncle Eddie(Don’s older brother) have logged some serious mileage in the past few days. Mo and Todd just camped their big behinds right here in Memphis and called them with the “Ya’ll come back now, ya hear ”information. Now, all Jake’s cousins are here (Madison, Jordan, Tucker, Masie, and Maggie), as well as his Aunt Marina (Eddie’s wife), and all the others listed yesterday. Paula and Johnnye Ford came up this afternoon, as well as Clint Perodeau and William Tickner. Having good friends around is calming and helps bring a little home to Memphis. I am particularly glad that Don has some buds here during this difficult time. Jin’s friends(the Drew teachers, who by the way, brought a treat bag from the Drew Sunshine Fund ) are snoozing at the Grizzly House, and Staci’s friends are snoozing at the Habitat for Hope apartment. (Thanks Tonya and Brent ) About 5:00am, I get a knock on the door at the apartment, and Crazy Trish Hampton (Emma Grace’s mom) and her mom and son, Eli, had made the 6 ½ hour trek from northwest Arkansas. Talk about LOVE and SUPPORT from a mom who has been there. And by the way, that sweet little Emma Grace turned 6 years old this past Thursday in Heaven Happy Birthday, Precious Angel.

OK, here are the simple seven.
1. Breathe... strong and deep and sufficiently
2. Move... gain strength and show us that he can move his arms and legs. Jake has shown a significant difference between his right and left sides. The right is much weaker. He is also not moving at all right now. We are glad that he is not struggling or fighting, but hoping it is not entirely due to weakness.
3. Smile... show us his will to live is there. Also respond to his family when he is awakened and off the vent It will do his mom and dad a world of good to see his sweet spirit alive and well.
4. Hear... able to hear his mom and dad tell him how much they love him and how proud they are of their strong boy. Able to hear the whispers of the angels and of Jesus telling him that he is OK, and that he is being cared for.
5. Calm... that as the sedation is turned off, Jake will remain calm and peaceful as he realizes he has no support of the vent. He will not fight or struggle. He will feel the peace of his parents’ presence and the angels will surround him whispering messages of safety and security and brushing Jake with their feathers. (I asked Brother Greg, and he thinks that YES, angels DO have wings. He referenced the Bible to support that )
6. Stabilize... Jake’s vitals will remain steady. At present, his blood gasses are good. His vitals are good. His heart rate is only a little bit low. His electrolytes are good We pray things stay that way when he has no support.
7. LIVE LIVE LIVE We are approaching the throne of God boldly asking for completion of a complete healing on this earth. We KNOW Jake is here by the grace of God. We KNOW he has brain tumors that appear untreatable, but we KNOW God can say one word and Jake will be healed. I like what Amy W. Said about when the doctors say there is nothing more to be done, that just gives us a bigger testimony that the healing is ONLY from GOD

2 Corninthians 4:
7But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9persecuted, but not abandoned; struck down, but not destroyed
Psalm 91
1. 1 He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty. [a]
2 I will say [b] of the LORD, He is my refuge and my fortress,
my God, in whom I trust.
3 Surely he will save you from the fowler's snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand, but it will not come near you.
8 You will only observe with your eyes and see the punishment of the wicked.
9 If you make the Most High your dwelling—
even the LORD, who is my refuge-
10 then no harm will befall you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.
14 Because he loves me, says the LORD, I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life will I satisfy him
and show him my salvation.

Ok, tomorrow, we need some big time prayers going up for Ol’ Jakipoo and his family and friends. This little boy is so loved! You should see all the “Jake Raborn - Believe” tee shirts roaming the halls of St. Jude. It is overwhelming. Thanks to all of you who are signing in. We read every single entry... and usually, I cry the whole time I am reading. You are very encouraging, so when you wonder, should I sign? YES, you should! Will update with any change.

MO

10:11am
It looks like Jake will not come off of the vent until Sunday. The ICU doctors swapped shifts this morning and the new doc wants to see Jake alert and breathing on his own today. To do that he will wean Jake off of the narcotics and put him on a medicine that they use for procedures. It has the same effect but wears off quickly. He is doing this to make sure the meds are not the problem for Jake. I really like the plan. It will give Jake his best chance to come off of the vent and be strong.

I did get to see those beautiful baby blue eyes this morning. He has been awake some this morning. He has been very calm and peaceful.

More in a little while.

BELIEVE,
Don

Friday, September 22, 2006 6:21 PM CDT

More info: 10:30ish tonight...
Ok, so the reason Jake is totally dependent on the vent at this point is that he was trying to breathe above the vent too much. I personally think that is a good thing! Jake is such a warrior! Because he was not well syncronized with the vent, he would try to take these quick little breaths which would cause him to keep too mch CO2 in his lungs and not expire it well. CO2 is acidic and O2 is what they would rather see high, not the CO2. He wasn't having good "exchange" of the two gasses. SO, they paralyzed him to see if it would make a difference in his gasses, and it did! His next labs showed an improvement, with decreased "acidosis". For tomorrow's wake-up, they will turn the paralytics off tonight at midnight. Then, they will start weaning the sedation meds rather quickly at that same time. I suspect noonish will be when Jake is ready for extubation, if the docs are ready and all his vent settings look good, as well as Staci and Don ready!! On Wednesday, when they tried to extubate him, he was breathing beautifully on the vent prior to removing the vent. He was breathing almost entirely alone. He was alert and talking to Jin and Staci, but only lasted about 20 minutes. He just quickly and unexpectedly stopped breathing. The docs were ready and resuscitated him and got him stable again on the vent. Tomorrow, we are praying that this does not happen. The thing is, they don't really have a good explanation for WHY it happened. At one time, it seemed to be due to pressure in the brain. Today, the spinal tap did not show excessive pressure in the brain! SO, hmmmm. Then, they hypothesized that Jake has a tumor that may be putting pressure on the area of the brain that tells him to breathe. Well, he was breathing prior to the vent being discharged, and got right back on track with breathing after he was returned to the vent, so the brain seemed to be doing its job. Don has described to me that the brain may have "waves" of activity or "episodes" that could cause him to stop breathing, and apparently it was coincedental that it occurred when they extubated him. I am praying and praying and praying that he is able to breathe when he comes off tomorrow. Staci and Don have had some horrific talks with a team of doctors, and basically, they are not very hopeful at all. They will have to consider the ramifications of continuing to intubate him when there is no real options for treatment of the widespread disease in his head. There has been a flood of tears in this ICU waiting room today! We have had many visitors who have come up to support us. Staci's best friends, Veronicia, Jennifer and Polly are here, and thankfully will be staying tonight to be with Staci tomorrow. They have provided some good comic relief, as all know only your bestest friends can do at a time like this! Mark and Mylissa Horrocks with Habitat for Hope came up with their brood to offer support. Kacy Acree, who has just met us through teh website, but is now a true friend, came as soon as she heard and is still sitting with us. Don's dad, stepmom, brother (Eddie) and sister (Bonnie) are all turning right around and heading back early in the morning. Pops and Nana (massey) are here, and Poppa and Sheila (our grandparents) are heading back too. And, can you believe it...our awesome pastor is heading back for the second day this week to be with us! Jin has some of her teacher friends, Patti, Lisa, tracey, Amy, and Crystal are coming as her good friends too. My best buds offered, but I think I may be better off without... if Staci wants me to be "happy", I don't think I could bare to see my best friends. But, Paula, tell Emma, I DID kiss Jake on his right hand for her and I told him Emma said, "You are my best friend!" (Kim W., I kissed him for you too, since you requested it!)

There is just no way to describe today's emotions. Staci and Don have moments. One of the worst was when Staci had to take the big boys back to the parent room to tell them about the upcoming events. Hunter, being the more outwardly emotional one, cried, and came out for some loving from Jin and Mo. Hayden, more private, stayed in the parent room alone for probably more than an hour. They have been such unbelieveable big brothers for the past two years... so unselfish and loving.. always willign to give up any scheduled event they may have had wiht their friends to make the five hour trip to Memphis.

Nurse Terry came up from the 2nd floor Amy K, wearing her "Running for Jake" bracelet, to cry with us and tell us how much she loves Jake and our family. Nurse Terry broke down too. We got to spend a little time with Cole's mom and dad, Dianna and Bill Hardy and another Believer, Terry Houston, showed up with a huge spread right about the time we got all the bad news. I am sorry, terry, for the lack of hospitality. We truly DO appreciate the food and your thoughtfulness.

Jake's AFP on the day of the ablation was 8100. Today, it was 1800! Normally, the half life of the AFP is a week. So, Jake's fell considerably faster than expected. However, teh AFP of the brain/CNS was 30. It should be 1. It is that dad-gome brain metastasis that has really screwed up everything!

OK, so pray for Jake to wake up slowly and without fighting the ventilator. He will be alert and able to move as the paralytics and sedation are taken away. We are praying that he is able to do this peacefully. Also, that Don and Staci are filled with power and peace as they have to make decisions that no parent should ever have to make. I just logged on tonight to make sure you know that I CONTINUE TO BELIEVE!!!

Mo


Today has not been a very good day. About 1 hour ago the St. Jude staff came in and told Don and Staci there was nothing else they could do. About 2 hours ago they tried to put a temporary shunt in Jake's head to relieve pressure in his brain and serve as a drain. When they made the incision, he started to bleed and continued to bleed so they stopped the procedure. What they wanted to see was some clotting so they could continue. Because of this there is no "hope" for the port in his brain to deliver chemo. What they will do is wean Jake from paralytics tonight at midnight and start halfing the sedation until he can breathe on his own.

NOW! What we need is a miracle in that Jake will breathe on his own and we all get to see those baby blue eyes again. We pray the weaning process will go well and there is not a lot of agitation or fear. Staci has demanded that there will be no sadness tomorrow!!!!

Please continue your prayers. We want this boy to come home-home. Focus on breathing alone in your prayers.

Love,
Uncle Todd and Aunt Mo

Friday, September 22, 2006 8:58 AM CDT

Jake had to be put back on the paralytic medicine last night due to some bad blood gas labs. This means that the vent is doing all the breathing for him. They want him to rest completely.

I can't begin to put into words how proud I am of Jake. He is fighting so hard. He is my hero and I get all of my strength and courage from him. He has been dealt the worst hand and is still in the game. He has fought for well over 2 years and he will never give up.

Staci and I are constantly amazed by all the support we receive. We can't begin to thank each one of you for all that you've done. Just know that you help us more than you will ever know. We're all helping Jake fight and we will all help him beat this disease.

The doc just came in and they are preparing to do a spinal tap to see if there is pressure in the brain. If the pressure is low then they will try to take him off of the vent on Saturday. If the pressure is high then the ball is back in the neurosurgeon's court.

We will keep you updated throughout the day.

PRAY.

BELIEVE,
Don

Wednesday, September 20, 2006 10:18 PM CDT

Update Thursday, 9:12PM

Well not much to report. Jake's heart rate dropped and there was a little concern about 30 minutes ago. It has sinced climbed back up. His heart rate has been up and down all day. They have scheduled an EKG for an unknown time. He has been resting all day and for me I would rather see him that way. My little buddy is ready to be off that vent when he is awake!!

A little laugh for everyone. There is about 10 of us in the waiting room and the phone rang. Hayden answered and he said "Someone for the Raborn family" We all started laughing and said "No...Not us." Hayden didn't like that but we all got a laugh.

Uncle Eddie and Aunt Bonnie are just heading out to drive home! Please keep them in your prayers for safe travel back home. Melanie and Staci's Poppa (Jake's Great-Grandpa) showed up with his wife Sheila earlier this evening. Pops and Rita are planning on coming up tomorrow (That is Jake's Grandpa and Melanie and Staci's dad. Veronica Wood, Jennifer Thurmon, and Polly Norris all came up this afternoon to support there lifelong friend, Staci, and to be with her during this tough time. Some of Jin's friends are coming on Saturday. Oh, and the Longhorn fans, The Pierces, came up to see Jake. Almost kicked them out but felt sorry for them getting beat by Ohio State. So, we let them hang around.

Thanks for the great supper from Katie Pittenger-----Pizza! And Jodi Johnson-----Lasagna from Spaghetti Warehouse! We had a large crowd so all that food was very appreciated. We are still having Maggie Moo's that was from Habitat for Hope. Thanks Mark!

Well, this will probably be the last update tonight. We will update as soon as we can in the morning.

Good Night to all!
Uncle Todd


Update Thursday, 3:15PM
Not much change with Jake....Just trying to keep him quiet and content while still on the vent. Staci and Don met with the team of doctors and agreed to consult Dr. Boop, the neurosurgeon that performed Jake's brain surgeries. The team wants to get his ideas on relieving the pressure on Jake's brain. So...continue to be patient...we'll update again when we hear from the doctors.
Keep Believing,
Aunt Bonnie

UPDATE Thursday 8:20am

Jake had a somewhat peaceful night. They finally got him sedated enough to rest. Jin and Aunt Bonnie stayed up all night and watched him while Staci and I rested. We're not sure what will happen today but will keep you updated.

Thanks for always being there.

BELIEVE,
Don

Up and down, up and down, up and DOWN… and for now, it remains pretty DOWN! The neurologist came in tonight and basically said he feels that the episode of not breathing today was due to the increased pressure in his brain. He explained that the brain is surrounded by a “sac” called the meninges. This sack has a series of veins which drain the fluid that circulates in the central nervous system (brain and spinal cord). The CNS makes new cerebrospinal fluid three times a day. They tell us that Jake has tumors in his brain and in his meninges. So, the tumors are potentially blocking the drainage of the fluid causing more pressure than should be there. So, unless there is something that can be done about the tumors, then, the pressure will continue. The doc’s only treatment at this time is to provide a medicine that will slow down the production of cerebrospinal fluid, although he admits that may only make a minimal difference. He will also use Decadron, a steroid, to help control swelling. When I went back to see Jake, I saw a pretty miserable little guy. He was throwing up and wretching almost non-stop for 15 to 20 minutes. Now remember, Jake is alert now, looking at us, and KNOWS he has a tube down his throat which is aggravating enough! Then, add vomit coming out of his mouth, and I mean it was almost unbearable to watch! At that time, it was me, Staci, Don, and Brother Greg. I started bawling, and my strong sister looked at me and said, “Do NOT let him see you cry.” So, I stepped to the back of his bed. Staci and Don were just constantly telling him they were with him and that they were trying to help him. Jake was pretty upset, and only recently got some Ativan and Versed . The meds are really not working to sedate him. He relaxes, but only very briefly! Please pray for Jake to have some rest and comfort. I just cannot stand to see him so miserable…. And then I think what it must be for Staci and Don. They are doing the absolute best job that could ever be expected of parents in this situation. I will tell you the words, “gut wrenching” come to mind.

Well, I know this isn’t exactly a pleasant update, but I have avoided some really bad conversations that have transpired over the last couple of days, and thought maybe it was time to just tell it like it is. There are really no words that can adequately describe this.

Please continue to lift Jake and his mom and dad (and brothers who are also here and pretty rattled) up to the LORD. Continue to ask for those angels to surround Jake. I personally asked God to command some of the angels to brush their wings on Jake’s feet (as he loves to have his feet rubbed) and some to brush his little head. Jake is mouthing “daddy” and reaching for his daddy’s sleeve to stick his little hand up it. He can do nothing but just lie there. He tries to cry, but nothing comes out. Please, LORD, have mercy.

MO

Wednesday, September 20, 2006 7:23 AM CDT

**4:25 p.m.
Update as dictated by Mo on her way to Memphis.

Jake is back on the vent and stable. He has been reaching for vent to get it out and he is breathing above the vent again. He has opened his eyes and looked around. Jin said that his eyes look fairly clear and aware. Jin was talking to Jake and she told Jake "Don't you give all of your smiles to your mom" then he looked at Staci and smiled real big. Jake stablizing so quickly today is nothing short of a miracle. PRAISE GOD! God has been very generous with miracle for Jake and his family. Don is just minutes away and Mo, Uncle Todd, Uncle Eddie, Aunt Bonnie, Papaw Raborn, Crawford, and Bro. Greg (from Mo's church is missing church tonight to be with Jake and the whole family)are all on their way. Keep praying!!!!!!

Melissa at Mo's Office



***12:45

So that you're not left hanging, I will tell you what I know - and that's not much. When all this began, Jake had just had the tube removed and had started talking and moving quite a bit. After he had been off the vent for about 10 minutes, the nurses began removing the goop from his eyes and the sticky stuff from his face. They were in the process of cleaning him up (he threw up during the tube removal process) and changing his dressing on his buddies, when I said to Staci, "He sure is calm." Another nurse said his SATS were falling and they began to prepare to bag him. About that time, all hell broke loose (excuse my aggressiveness). Anyway, it began to be a scene off TV. A lot of scurring around and loud requests began for the need of respiratory and doctor to hurry into Jake's room. They were bagging him and then they intubated again and got him stable. The doctor said that if there had been an occlusion or blockage, he would still have tried to breathe even though he might have struggled. He then said it must have been his brain telling him not to breathe. Therefore, a CT scan was needed to see what was going on in his brain; also. there would be a meeting of Jake's team and probably an MRI later.

Since Jake has returned from scans, he has begun to breathe over the vent some and moving around a little. Praise the Lord!! We do not know the results of the scans at this time. We were told a minute ago that his blood gases were good. So that's another praise.

Don left work immediately and is heading here to be with his baby boy. Mo and Todd checked the boys out of school, and they are now on their way, too. I don't know about the rest of the family (Pops and Rita, Uncle Eddie, Aunt Bonnie, PawPaw Raborn and Crawford).

So that's the story. Mark Horrock is here now with us. We've had prayer and once again,

we sit and wait...

Jin Jin

***
Scan results just came in and there is no change from last time. EEG is normal and there is no sign of seizure activity. The neurologist will be in later tonight to tell us what he thinks. This will be the scary part. Please pray.



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

Melissa at Mo's Office


I am in West Monroe, so I am getting a lot of information second and third hand. I will just say there has been a lot of "negativity" regarding Jake in the past couple of days. The bleakness of the tumors in the brain is really the cause! Because there is something called the blood brain barrier, treatment that could be delivered to Jake's buddies would only affect his lower body, and would not travel to the brain or spinal cord. Therefore, there has to be a separate approach to target these areas. The bone marrow transplant is supposedly rendered useless in regards to the brain also. So, this is what it is.

The deal with putting a port in his head and delivering chemo directly to the brain is apparently a study. There are many experimental protocols out there, but there must be an opening available to do this. At present, there is not one. Staci has been dealt some tough information in the past two days, and in true Staci fashion, she hits it head on like a stoic. Her strength is something to marvel! (I put her right up there with Nancy Mills, and I would say that is pretty strong!)

The plan remains to continue the weaning process today. Jake has opened his eyes a couple of times, but anyone who has ever seen someone on the vent knows that your eyes are covered in goop, so it is probably pretty disorienting for Jake. He is off the paralytics, so from what I am hearing, there are times that he is tough to handle, as he is using his tongue to try and push the tube out of his mouth and flailing around trying to figure out what all is going on. Mom said Staci just talks him through it, and his blood pressure/heart rate just slowly calm back down. He is now breathing entirely on his own, so I am sure your question is like mine, "then why is he still on the vent?" Good question. All weekend we were told it was precationary, then Monday, there were some strong talks as if he is inevitably going back on it anyway, sooooo.....
Staci ignored that and said, wean him. Good for her. I believe Don is heading back up this evening. I am pretty sure he has been working those long 16 hour days so that he can get back where he wants so desperately to be.

Once Jake is weaned, the plan is to take him upstairs for observation for a few days, then let him come home. This, of course, is a tentative plan, since "tentatively", the surgery Thursday was to be an overnighter, and we were all driving merrily back to West Monroe on Friday.

We await the next AFP. But in the meantime, I wanted you to know that basically, we need a strong united, fervent prayer that there is an option that becomes available for the brain tumors....OR that the brain tumors are GONE! Heck, I don't even care if they stay, as long as they don't grow and are not symptomatic! So, please let that be your prayer today. LORD, give us a way to cure Jake. Give the docs an option. Lead him to his healing. We fully acknowledge that Jake has been given many miracles along this mean ol' journey. But I KNOW that the Bible says to ASK, SEEK, and KNOCK! Well, Believers, we NEED you. LORD, hear our prayers. MO

Tuesday, September 19, 2006 3:40 PM CDT

UPDATE - 7:00 P.M.

Another quick update to let you know that, although Jake is totally breathing on his own, they will not remove the tube until morning. He has shown his spunky side several times today, letting us know that he doees not like to be bathed, have his sheets changed, or have the overhead light on. He might be on a ventilator, but he is still the boss!

I'm very sad to tell you that Ben Bratton earned his angel wings this afternoon around 5:00. His parents are devastated but still remembered to tell us that they would continue praying for Jake and would keep up with him through this site. God gives us strenght we don't know we have.

Thanks to Nancy Mills for a great BBQ lunch and to the Horrocks for a wonderful TGI Friday dinner.

Keep praying.

Jin Jin





The paralytic and sedation meds are being lowered to wean Jake off of the vent. We hope he will come off this afternoon but it is a slow process.

Please pray that everything goes smoothly. Pray that he is calm. Pray for Staci as she comforts him.

I don't have much else to say right now. I'm sorry. I will try to keep you updated.

Just pray.

BELIEVE,
Don

Sunday, September 17, 2006 10:21 PM CDT

***UPDATE MONDAY, 2:45 P.M..


A quick update to let you know that Jake is not coming off the vent today. Instead, they have covered his head with 16 electrodes to monitor his brain for 24 hours. This is to rule out seizure activity.

We sit and wait...


Staci and Jin







11:11pm (that is my "lucky" time!!)
The CT scan is an ALL CLEAR! No change noted since earlier in the week, and all vitals are now stable. MO


Boo Hoo Hoo.. I am back homehome. It was a relatively uneventful weekend, and when Jake is on the ventilator, that is just how we like it! However, just as I land in Monroe and call back to tell mom I made it (yes, I STILL do that!), Staci said Jake's heart rate had dipped. She said it was coming back and was now 88. When I left it was hanging around 125, and Todd said when he left 145. So, between 40-60 beats fewer per minute is significant; especially when that is the "comeback"! They aren't real sure why it dropped. Jake has been wanting to wake up a little today, and at one time, they even saw his eyes open. (I missed it!) To stop him from waking prematurely, they would boost his sedation meds. Prehaps this caused the drop. As a precautionary measure, he is in CT scan right now, downstairs, vent and all. They are making sure he is not having some brain swelling. I swear, Jake has "special tests" as often as some people take a bath! Hopefully, Jin will be calling me (I don't care what time, mom) to let me know if they hear some results. They have a sticker on his door that says "NPO at 6:00am". They don't want anything in his belly when they try to wake him up, so this sign is an indicaiton that the wean is ON. His settings were lowered to 20 percent oxygen support, his PEEP is 4, and all systems are "go" for decreasing the sedation tomorrow and letting Jake wake up a little to start his own breathing. Please remember to pray for him tomorrow that he will breathe well and not be afraid as his sedation wears off and he sees mom and Jin, waiting right there for him, wiht a tube down his throat and his not being able to talk yet. Ask God to send those angels to whisper comforting words to Jake, to hold his hand, and to bring him peace until it is all over.

Poor Don. He called Staci yesterday and said, "I am so depressed.... Nobody's here. LSU lost. I think I will just go to Maggie Moo's." (ice cream joint!) I know he would give anything to be there with Jake tonight. But, he is doing what has to be done for the sake of the family. It will all work out. Know why? Cause we love the LORD, and it all works for the good to those who love the LORD!

Thank you all your lurkers for keepin it coming. Can you believe that today there were BElievers from FInland, France, GErmany, and Scotland?! How cool is THAT?

We have been sharing the ICU waiting room all week with the Bratton family. Ben Bratton is a 10 year old warrior who has been fighting neuroblastoma for 4 years! His mom hardly ever leaves the room! Ben is his parents' only child. His grandparents haven't left either. They are from Tupelo, MS. They are close-knit, and are obciously in it for the long haul. Ben has severe liver disease. He has lots of other bad issues, but if I had to ask for something specific for Ben, it would be for the LORD to touch and heal his liver and his mouth (severe, and I mean SEVERE mucositis of the tissue of his mouth, throat, and gut). I am sure his parents could use some comfort and peace too. They don't have a caringbridge site, so I will just have to keep you all posted.

Thanks to SCARLET "ALL CAPS" FERGUSON FOR BRINGING US STICKY BREAD THIS MORNING FOR BREAKFAST. ALSO, STACI TOLD ME TO TELL YOU THAT WE SHARE THE FOOD BROUGHT TO US, SO MORE BANANA PUDDING WILL NOT GO WASTED. THE NURSES EAT OFF US, AS DO LOTS OF OTHER MAMAS AND GRANDMAS AND VISITORS. SO, THANKS SO MUCH FOR ALL THE GOODIES.

Also, thanks Dawn and Mason for coming up to visit. We just love visitors. I thought it was funny when ya'll had to wake me up, at 10:00am! Then, for Scarlet to meet me and Staci looking like we did. Luckily I ate Wang's chinese last night, so I told her the sodium in the chinese food had me "bloated." I was able to use the excuse that "usually Staci and I are quite thin. We were just 'swollen' from all the MSG!!" Riiiiiiiightttt!

Well, I am sure my sister or mother will take the reins now. They are the ones in the trenches with Jake. Hopefully, Jake will get to come home again soon.

MO

P.S. PawPaw Raborn, I don't know what happened to the Believe Express. I wouldn't know how to take it off. Maybe ask DOn?! Hey, Trina, I have seen your graphic excellence, so send us some of your magic! Mo

Saturday, September 16, 2006 11:12 PM CDT

ALMOST three... who's with me?! Mo

2:10am Boo! Anyone up with me? MO

Well, another day, another bunch of laughs... no... really! Me, mom, and Staci can make lemonade out of any bunch of lemons, even if they are being heaved at us as we are standing in cow poop. There, now that means a really, really bad situation can be made good. As I type, Mom and Staci are piled up in the pleather recliners eating on some DEEElish pies made by Nancy Mills, mom to beautiful Allie, who passed away last year. Allie is the cute, cute, cute little teen who is on the St. Jude “infomercials”, narrating her own story, and making me cry buckets because of her strength!
Isn’t it awesome that her mom STILL makes a point of connecting with families at St. Jude who need her. Then, there was Nurse Sarah and her mom who made enchiladas for dinner a few nights ago, and that Staci is protecting like a mother bear protecting her cubs! She did actually share a little today, Sarah. That was so sweet of ya’ll, so thank your mom for us too. And last but not least..... Brent Nason, a patient here at Spa Jude, was inpatient this week, but his sweet mom, Tonya, still made nanner pudding for the Raborn crew. It had pecans on it and was unbelievable!

Ok, enough of what we are eating.... Jake is still on the vent and will be there likely through Monday. The doc on duty feels that there is a potential for harm if the blood that is in his lungs is not fully clotted and the area “healed”, that as Jake wakes up, coughs, sputters, etc.... he could start bleeding dangerously and require a chest tube or thing of the such. There will also be more staff available on Monday, “just in case”, so they are opting to wait. It is ok with us, now that they are feeding Jake (nothing since Wednesday night!) And he is relatively stable. So, we sit and wait...

Since there are no Jake antics, let me tell you about some funny Staci stories! Today, we are sitting in the waiting room of ICU, and I am scrapbooking the cutest dang little book for Hayden of his ball season. Staci walks in and says, “WHO in the world would bring a kid with cancer this balloon?!” It said, “Got a Bug? Get well soon.” Staci said, “Yea, we’ve got a bug... and have had it for two and a half years!” As if it is a cold! Then, I persuaded her to get out for a little while, and we went to the store. Jin was with Jake. I assured Staci that if he started to wake up that Jin would call us... particularly funny since he is on full out paralytics and big time sedation meds. Anyway, she bought some new pajama pants and a really soft tee shirt, (since that is all she wears nowadays). The check out lady said, “Ooooh, you are really going to sleep in luxury tonight.” Staci could hardly hold back her laughter as she said, (to me), “OOOooooh, yea.... these pajamas are really going to help me feel luxurious when I am sleeping upright in the pleather recliner. Hey, I know.... maybe I could get the nursing staff to bring me a warm blanket!” Inside joke, because all St. Juders know that there is a blanket warmer for kids who are having chills or need there temps to come up. The warm blankets are the BOMB, and even Jake knows how to turn on the charm to get one!

Welcome aboard all you lurkers... I am so glad you have decided to come out from under your rocks and participate! It is truly so uplifting to read all the names and places of the people who are praying for Jake. SO, you have been outted! Now, stay on the Believe Express with us! Theresa McReynolds, I appreciate your noticing my need for listing, as it tends to organize my thoughts. Is that a sign of a genius?! Just wondering! Jane, could you research that? We are glad that you and your children are praying for Jake. When we get back home, you will have to come and visit him! Beverly Lopez, I am really, really glad you found us! I LOVED your prayer, and it seems we have another prayer warrior on Jake’s team. Thanks for your inspiring words. Masie, hey girl... I am proud of you for checking the website and signing on by yourself. You are getting so big! I will kiss Jake on the forehead for you right now!

And speaking of getting big... Big Hunter has his first Junior High dance tonight. He is going with two of his good buddies, Tyler and Ray Paul. If I had to guess, whoever is driving them to the dance will need to let down the window to breathe from all the “love juice” they have probably doused on their necks! Pity the fool who doesn’t remember to take pictures for Hunter’s mom!!

For tonight’s simple seven:
1. Jake will be easily weaned from the vent this weekend or early next week, when he is stable and the docs feel the time is right. He will awaken calm and not fearful. He will not have problems with bleeding or breathing!
2. Jake’s docs will have a clear picture of how to handle the next phase of his treatment. Staci and Don will have a sense of peace when the plan is disclosed to them.
3. Jake’s next PET scan will show a radical change in the lungs, where NO tumors can be found. I know... he never got to the right one... but we all know God could have gotten there!
4. Jake will awaken ready to eat. He is skin and bones, and as far as he is concerned, he is still asleep for the “picture” he thought he was taking on Thursday morning. I pray he awakens where he left off... wanting someone to get him something to eat!
5. Jake’s AFP will begin to cascade downward. The docs will be shocked by the decrease in his tumor marker, and he will be at a very low number so that future treatments will not have to “work so hard”, starting at a lower baseline.
6. While Jake is on the ventilator, he will be free of infection and his electrolytes will remain stable. Continue to call upon his angels to surround him on all sides,... above his bed, below his bed, at the foot of his bed, and at the head of his bed! Jake will feel a sense of peace and he will be totally protected!
7. Well, we always have to reserve this one for a COMPLETE and total healing on this earth!

Okie Dokie, we are going to make like a cow pattie and hit the trail! Please keep lifting precious Jake up to our Heavenly Father who loves him even more than we do... although that is hard to fathom, isn’t it!? We KNOW he has “plans for Jake’s future; one of hope... plans to prosper him and not harm him”! We BELIEVE” the prayers of the faithful will make the sick person well; the Lord will raise him up”.... and “after Jake has suffered a while, our GOD, who is full of kindness through Christ, will come and personally pick Jake up and set him in place and make him stronger than ever.” AMEN!

MO

Saturday, September 16, 2006 0:37 AM CDT

Hopefully, Don won't mind that I am taking the liberty to clear his entry and update a little more lengthy tongiht. I am trying to refrain from cussing since I just lost my full descriptive update- AGAIN!!!

Ok, I am trying it again..
It has certainly been a roller coaster of a day. Jake went to MRI at 10:00am, but by 4:00pm, we still had no definitive results. Finally, word came that no, Jake didn't have a stroke... but Yes, Jake DID have "many" new tumors in his brain. Some were "deep" and the covering of his brain is also diseased. (Don, I hope I translated what you told me correctly.) So, with a very heavy heart, we just moped around a little while to let that sink in. As Staci has said many times, only when there are no options will she panic. I must admit, I didn't panic, but I was pretty pissed off! Harsh word, and harsh feelings! Once I bounced back, I processed what Staci and DOn had told me would be the likely treatment option of choice. Now get this... this is the "best-sounding" option presented. Jake will have a port put into a vessel of his brain where chemo will be directly administered into the head. Because there is a blood brain barrier, the bone marrow transplant is supposedly not useful for any disease in his brain. Well, chemo directly to the brain does not sound like much fun, but it does sound like St. Jude is not giving up on Jake! Bless their hearts... no one can ever fault them for not trying everything their little minds can fathom to save a life!

Jake remains on the ventilator with his saturations at 100 percent. The doctor who was responsible for weaning Jake (and might I say pretty quickly and effectively) from the vent last time is on duty this weekend. Praise the LORD for that! He has already told Staci that he intends to start the weaning process tomorrow. All Jake's settings are looking good to do so. I am so ready to see those pretty blue eyes again! Jake's bilirubin went back up today, so we need you all to ask the LORD to just protect Jake's weak liver. Make it strong... make it invincible! His sodium is also falling, and for anyone who has followed Jake for long, you know that he has sodium problems on and off following surgeries and stressful events. I would say his endotrachial tube filling with blood yesterday, paired with him going into respiratory distress and being resuscitated would qualify as stress, wouldn't you?! So, also pray that ALL of his electrolytes are perfectly balanced... particularly the sodium!

For a little bright spot... On September 6th, Jake's AFP (tumor marker) was 8600. The baseline AFP, taken yesterday before the procedure, was 8100. Are we to assume that since there has been no other "treatment", per se, that the BONE MARROW is having a little "let's attack some cancer" party?! I hope so. Then Don burst my bubble by saying that basically lab error could give a /- 500, so I should stay cautiously optimistic. Whatever! The AFP should be considerably lower since the doc was able to get the largest lung tumor and three other small ones before the LORD said, "Enough!" And speaking of the LORd calling the shots... many of you noted that without the air bubble thing, there would have been no MRI and therefore no knowledge of brain tumors... so, let's just call it divine intervention and give thanks!

I sat here with tears in my eyes a little while ago as I scrolled down and saw all the "Praying for you"s that were on the guestbook.... it is absolutely overwhelming! Thank you so much. We NEED you on this journey! Also, I am empowered by all the people saying things like we BELIEVE in you, WE KNOW you can beat this, WE are right there with you, Jake... etc. Please keep up that positive MOJO! Continue to claim Jake's healing. Continue to tell God that you KNOW HE can heal Jake. Continue to thank HIM for all He has already done in the way of miracles in Jake's life! It is awe-inspiring to think of how far Jake has come and how much he has overcome! Thank you, Jesus, for Jake's life. Give us his future. Let us be good stewards of our own lives! Let us not take a day for granted.

I will try to do better about updating tomorrow when the weaning is occurring. I was not in a good place today! Don tearfully left this evening with his good buddy, Todd. I just couldn't bring myself to leave, so I am flying home Sunday night. Jin is in it for the long haul with Staci. Pray for DOn, as it is VERY hard for him to be away. Pray for Staci that she can handle it alone. And pray for Jake, that he feels the presence of the LORD all around him. Thanks for hanging in there! Mo

1:20am Please also whisper a prayer for the McKnight family. Their 16 year old daughter died only a few minutes ago. Her name is Meagan McKnight, and her three younger siblings are here along with her mom and dad. Meagan was from, ironically, West Monroe, LA! We have been sharing the waiting room with this family for the past two days, and they are really having a tough time right now. Thank you. MO

Friday, September 15, 2006 5:11 PM CDT

The results are in and here is the news. The air in the brain is one spot and should not cause any problems. There was no signs of stroke. The air should just absorb into the body. That is the good news and here comes the bad news. The MRI showed many small tumors in his brain.

The plan is to get him off the vent and stable over the weekend. We will then meet with the doctors again to discuss options.

Jake and the entire family will NEVER give up. We are crushed by the news but we will just dig down, fight, and believe.

I'm sure there will more updates so keep checking.

BELIEVE,
Jake's Dad

Thursday, September 14, 2006 7:14 AM CDT

9:15am Friday
MRI scheduled for 10:00AM....We will update when we know more.



10:00pm
Hey, Mo here. Wow… what a day! Todd and I are chillin in a hotel near St. Jude. Mom is at the Grizzly House. Pawpaw Raborn and Crawford are staying with her niece. And, Staci and Don are nestled up in chairs next to Jake in ICU. He suffered a lot of blood loss this afternoon that resulted in the doc deciding to pull out the probe to try and reposition. When he pulled it out, air escaped, and it went to his heart. When they went back to see it again on CT scan, it was no longer there. They only assume it went to the brain. If this is the case, it could mean brain damage. However, it is NOT the case. I am just sure of it. An MRI tomorrow morning will verify that. Dr. Hoffer was able to remove the large tumor in the lower part of the left lung. He also got three smaller tumors in the left lung. However, he did not get over to the right one at all. He had warned us that the crossover from the left to the right may be risky and seemed to be where a lot of the risks with the consent form were targeted. As you may also all remember, we were praying for Dr. Hoffer to know when to stop. When he was talking to us prior to surgery, he admitted that he just didn’t really know how aggressive to be. I told him that he had so many people praying for him, so he didn’t have to worry about that, because he would KNOW! Well, I certainly guess he knew! Thank you, Jesus, for making it clear to Dr. Hoffer when to stop! Jake remains on the ventilator this evening, but he is medically stable, and his oxygen sats remain 100 percent and his blood pressure and heart rate are great! SOooooo, they are just keeping him on the vent tonight to let him stay stable through the MRI tomorrow morning to rule out a stroke. Have you ever known a stronger kid?! I cannot wait for him to wake up tomorrow, not remembering any of this nightmare, and say, “I’m hungry!” The last thing he told me before going back to the ablation today was, “Mo, go get me something to eat.”

Jin just called me and said she had written an update, but was going to erase it. I told her to go ahead and enter it, and then I would enter one too, just for additional info. SO, if there is overlap… so be it! Keep on praying for our baby! MO

Todd asked me to tell everyone who tried to call him today or who may have been expecting a call from him that his cell wouldn’t work in the hospital. Mine was dead too! And… one more thing… Don has to go back to work tomorrow right after Jake’s MRI. Please, LORD, let Don see his son doing well prior to having to leave! Mo


9:45 p.m.

I'm taking it upon myself to update since I finally got to read the guestbook and see how so many of you are waiting to hear about Jake. All I can tell you right now is that he is very stable. He continues to be on the vent, but they have lowered the setting from 100 percent to 40. It comforted me to know that they will keep him sedated through the night so he won't wake up with the tube in his throat which I'm sure would be frightening to him. There's really nothing to tell until after the MRI tomorrow. I don't even know the time, so just keep checking and praying.

We've all scattered for the night, so if anyone else is so inclined to update again, please feel free to do so.

I can never express how thankful we are to have all you prayer warriors with us. I think this was the most scared I've been since May 31, 2004, the day they identified "a large mass" in his liver. Thanks for helping us get through another hard day. Keep praying, please.

Jin Jin






4:30PM
Air is out of heart. They are still concerned about air that could have gone through the brain. This could have caused an interuption of blood flow. Which could cause other problems. Time will only tell. The next MRI is for in the morning. Jake's blood pressure never fell, Oxygen levels stayed at 100percent, and he is stable right now. That is good!! Don and Staci have still not gone back. He will stay on the vent until at least tomorrow so they can keep him stable and calm. We all feel like he is going to be ok. We will let everyone know as soon as we get anymore news. Oh, Don and Staci just got the call to go back.

Uncle Todd




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

BELIEVE,
Don


3:30pm
PRAY...PRAY....PRAY
Just received a call from PawPaw and Mo...Jake has been taken to ICU with "complications". We don't know the kind of complications, the extent, or where in the procedure they happened.
Father, you have brought this baby so far...please, let your presence as the Prince of Peace be overwhelming to Jake, Don, And Staci right now. Let him feel safe and comfort. We BELIEVE that you can and will heal this precious boy.
More details as soon as they come,...promise.
PRAY and BELIEVE
Aunt Bonnie

2:00pm:
Just sitting and waiting. We have a peace, so thank you for so many prayers! Jake went out around 12:45ish. A little later than expected. Anyway, I will keep you posted as we are. I mainly want you to feel like you are here with us, because we TRULY depend on you for strength when we KNOW that prayer is what can save Jake's life. Thank you for so much support. Mo

11:10 here...
Just met with Dr. Hoffer, and it was a family affair. I can barely feel my extremities right now, because all the news tends to just make you numb! Staci, Don, and Todd are heading back to the procedure room. I think PawPaw and Crawford may be with them too. Jake looks a little worried, but I think he is feeling our stress. He has "numerous" tumors, and Dr. Hoffer says these ablations are "not for cure." Staci assured him that she knew that, but she wants him to be aggressive, and that she is expecting the bone marrow transplant to "be for cure." As for the left lung, there are about 5 tumors that he plans to go after. One is just above the site of the last ablation, but is near the pulmonary artery...

so stop now and pray that Dr. Hoffer's hands are very steady and skilled when getting that one....

Then, there are several more lower, but one is in the area of the phrenic nerve, which is the nerve that innervates the diaphragm, so it could cause paralysis of the diaphragm which causes it not to sink with a deep breath, therefore, the left lung would not be able to expand. And in Jake's pulmonary condition, that would not be acceptable....

So stop and pray now for the phrenic nerve to be perfectly protected as Dr. Hoffer gingerly excavates a tumor near it without harming it...

Then there is one in his right lung. There is some question as to whether or not he is going to go for that one. He says by crossing over, there is increased risk for a pneumothorax (hole blown in the lung and life-threatening; he had two while in ICU on the vent) AND may cause him to be short of breath... as in for the rest of his life.... I assured him that he had thousands of people praying for his steady hand and wisdom while in the operating room, so he can rest assured that we BELIEVE the LORD will guide him and give him the conviction to get what needs to be gotten and leave alone what needs to stay....

Please stop now and pray for Dr. Hoffer's complete wisdom and steady hands....

We reminded him that Jake has a bone marrow transplant in place to help with smaller areas and any residual disease. And.. I reminded him that Seattle is just a plane ride away, and if we needed to get Jake there for another procedure, then "it's nothing but a step for a stepper!" In other words, I hope he does not feel totally pressured to get it all, leaving Jake dependent on oxygen forever, when there remains future options.

Jake's platelet count was over 110 today! That is 110,000, and double what they felt they needed. Praise the LORD. He didn't get platelets this morning because he got them yesterday, and they held so well. He was so brave as he had to get stuck in his arm to see how well his blood was coagulating prior to the surgery. I HATE to see him anticipate the sticks. He is so, so brave!

As you usually can, I am sure you sense desperation and fear in my words. Staci, as usual, seems cool as a cucumber. Jin is sick to her stomach, and Todd can't pull himself away from Don or Jake's side!

Please pray for peace, wisdom, SKILL, and for Jake's lungs to bounce back smoothly. The people around here see him and CANNOT believe all he has been through in the past 6 months and that he still looks as good as he does. The LORD is blessing him... we continue to BELIEVE He will bring healing to him!

MO



OK, I am sitting here huffing and puffing because I just lost my entire update... breathe in, breathe out... ok, better!

As for my sister and brother-in-law... they found themselves in hot water last night, when NO one had heard from them regarding the PET scan results. We later found out that both of their cellis were dead, so we cut em some slack. When we finally did catch up with them, they were at Cracker Barrel letting that poor baby get something to eat, since he had been NPO for virtually the entire day. He proabably didn't get to eat until somewhere after 4:00ish. Anyway, there were no results to report, because they didn't even talk to a doc about them yet. That conversation will be with Dr. Hoffer (Prayer warriors... that is the surgeon's name!) today, prior to the procedure. Did I mention that Dr. Hoffer is moving to Seattle, and Jake got the VERY last appointment that Dr. Hoffer will ever fill at St. Jude? Is it odd, or is it GOD?! Anyway, there will be an AFP taken prior to the surgery to get a really fresh baseline for determining the success of the surgery. Staci and Don are at the Grizzly House, but actually had to be at St. Jude at 7:00am this morning for Jake to get platelets. Because there is always risk in a surgery, he needs to get his platelets above 50 (or 80?), and they weren't there.... so thanks to all you platelet donors (Brian Lee and Todd and Dawn Pierce), this is WHY you give! Lastly, Jake's bilirubin is up to 19. That is like, Scary-high! So, the teacher is being back on duty. He is on a higher level of steroids to try and get things back in line. We are excited that the bone marrow is on attack... we just need it attacking cancer and not Jake's liver!

Jake's procedure is at NOON. So, prayer warriors, start your engines....

Boogity, boogity, boogity...

1. Jake's procedure will be successful and "easy'. Dr. Hoffer and his staff will have the wisdom and confidence to get all visible tumors out!
2. Jake's recovery will be painfree and speedy. He will need no extended pain meds and will be homehome by the end of the weekend.
3. Jake's intubation will be of no consequence. He will intubated for the surgery, then quickly and easily extubated, as his little lungs will take over and be effective!
4. Jake will have no side effects... particularly, there will be special care for no burn this time! His skin will be protected. Angels... be there.
5. Staci and Don (and all the tagalongs) will experience peace and confidence throughout the procedure. Angels be there too!
6. Jake's bone marrow will chill out enough to leave the liver alone, but will quickly be reactivated to rid jake's lungs of ANY cancer cells... we are SOOO close!
7. Jake will have complete healing on this earth. IN the NAME of JESUS... we BELIEVE!


St. Jude has a computer room, so expect an update. First, there will be a call to Pops and Uncle Eddie who will have his orders to call Aunt Bonnie and Aunt Marina. Once those bases are covered, I will be upstairs typing.

Pray for the angels to be hovering around a little procedure room on the first floor of St. Jude today.... Jesus, send your protection.

Mo

Monday, September 11, 2006 9:31 PM CDT

Thank you, thank you, thank you, to all you lurkers out there who have been reading, but not signing. It is an important week in the road to healing, so we just need all hands on deck! Rev your prayer engines... we need you!

Yesterday, a nice Sunday with great weather, and Staci and I headed out for Shreveport. It is about an hour and a half trip, and it tends to get OLD. Especially for Staci who has had to go every other day, (at least) since Jake has been home. Anyone who drives that route knows that it feels like about three hours! It is a BORING trip. Anyway, as we were pulling out, I told Staci say a prayer of thanksgiving that we GET to keep on driving Jake to and from Shreveport. She told me that she told God that if He would ALLOW her to, she would drive her baby to Shreveport every day for the rest of her life, so I was just reminding her to be grateful!

On our way to Shreveport, I finally convinced Staci to roll Jake's window down in the back seat so the 18 wheeler dudes could see us (me and Jake) doing the universal sign for them to honk their big horns. Staci had been doing it, and the truckers must have thought she was a nut! They couldn't tell there was a little kid in the back who wanted to hear it. The windows are tinted! Once they actually saw Jake, the number of honks went dramatically UP!

I had the opportunity to look at the pics on Staci's camera, and let me just say, she has really been holding out on us! She las LOTS of good pics, and has not been sharing them! Jessi will be putting pics on the site tomorrow. If you have any complaints about them not being on there today, please address them to her! Sorry, Jess, I can't take any more abuse! Just kidding.

Jake is still ordering lots of food, and eating very little of it. He drank about a 1/4 of a bottle of chocolate milk on the way to Shreveport yesterday. He also ate Hershey's Kissables. I figure at least they have a lot of calories! Also on the way to Shreveport, Staci and Jake sang out loud to "JoJo's World", and "Stanley" and other tunes on the Disney soundtrack. I was absolutely cracking up at Staci's enthusiasm and her knowing every word to every song. Jake would just grin at her so proudly as if to say, "MY MOM knows all the words to ALL the cool songs!" It was such music to MY ears to hear Jake singing along. He hasn't done a lot of talking, grinning or singing lately, so I was just pleased as punch to hear him bolting out his little words.

TOday, I get a call at my office, and Jessi comes back to see if I can take a call. She says, "Jake is on the phone... he wanted to call you... do you want to take it?" WHAT?! Of course I do... It is my precious angel nephew! He said, "Mo, Dad just got the dirtbikes off the truck. Come down here and let's ride dirtbikes." I don't think he remembers that I work! I surely do wish that I could've dropped everything and gone home to ride. Instead, his mom and Uncle TOdd rode with him! I am jealous!

Well, it was a long day, so by the time I got to his house, he was ready for beddy bye. They had a long day too, and I can't believe I forgot to mention that Hunter had an MRI today. He has had pretty bad headaches for several years now. This is not his first test for them, but probably the first in the past two years! Please, LORD, let it be nothing serious... and please, let there be a solution for the headaches.

Staci, DOn, and the Jakester will be heading to St. Jude tomorrow evening. He has a photo shoot first with Corbin, Allen, and Gus, who are all partnering with Jake for representing Monroe/WEst Monroe in the St. Jude marathon this December. I will find out where these pics will be and let you know. To the few who were at the TEAMJAKE meeting today, thanks for continuing to support Karl and his efforts. TO everyone else, come on... let's have a big, inspiring meeting next month! The countdown is on! Keep on training!

I appreciate all the words of inspiration in the past few days. I also really love when people share their favorite scriptures. Every single word is read! Please be in prayer for Jake. Tie a string on your wrist or put something at your workspace to remind you to pray for him throughout the day over the next few days. He is weak, so any procedure requiring him to be put out is risky! Please, God, keep his safe!!

Mo
9/11... a day we will always remember.

Saturday, September 9, 2006 10:28 PM CDT

I hate to erase my one day old update from yesterday. It was full of good news. So, if you haven't read yesterday's good news, check the journal history!

As for today.... one word sums it up... AWESOME! I am so thankful to the many of you who must have prayed for Jake to have a good day. The prayers worked! Jake had a ball! Thanks to the entire Gist/Hamilton/Foust families who made this day possible. Jake decided yesterday that he wanted to ride in a boat. SO, I called my best buddy, Cindy, who can always make things happen! She made a call and VOILA, we had a boat trip planned. Jake's hemoglobin was actually low yesterday, so we didn't really know how he would feel today. As a matter of fact, he did perfectly great. Boat riding is an activity that actually allows Jake to be a participant with the rest of us. And... do you just know how perfect our weather was today?! It could not have been better. Oh, and Trish, if you are still reading, there was an "Emma Grace Sky" over the lake! We went out on a party barge, and it suited all 12 of us. The big boys enjoyed tubing, and toward the end of the day, Jake looked at me and said, "Mo, when I get big, I am going to do that!" I said, "You sure are, Jake!" One of our favorite little games today was throwing grapes at the person in the tube behind the boat. Even Jake joined in! Miss Cindy also provided a big ol' spread for picnicking. Jake ate pretty well. A few bites on this, a few licks on that... oh well, every little bit helps him toward getting that stinkin tube out. DOn't think we don't thank the LORD for the blessing of not having to take the MANY, MANY meds he gets in the tube by his mouth. That would not be an easy chore, for sure. Anyway, a perfect end to a perfect day was going to Miss Shelley's house and learning to fish in her pond. Mo had to bait the hooks because Staci has had a lifelong phobia of crickets. Then, we basically just fed the fish! Hunter and Hayden both caught one, but me and Staci just kept on baiting! Jake had more fun with the four wheeler, riding all over the pasture! Seeeee... just a whole lotta fun all the way around. We ended with pizza. Imagine that!

I have lots and lots and lots of cute pictures, but you will have to wait until Monday morning for new pics, because Jessi does all my computer work, since all I can really do in type! Jake was all smiles, so be sure and check in on Monday!

ok, for the Simple Seven:

1. Jake will get stronger in the next two to three days so he is ready for being put under anesthesia on Wednesday and for a lung procedure on Thursday with minimal complications due to weak lungs. He "practices" coughing hard upon my request! When he coughs, I brag on him and ask him if he can do it even harder. He always humors me and tries! He is more willing to try and walk a little and even rode a trike today at the boat dock.
2. Jake will continue to want to eat more and more. His little ol bones stick out everywhere. You can easily count his ribs and even the vertebrae of his back. He is just skinny! He is trying more, but just hasn't much of an appetite. Oh well, God can give him that too!!
3. Jake will have a smooth lung tumor ablation this Thursday. He will be intubated, the procedure will be flawless, then he will be extubated without any complications! The procedure will be a success, ridding his left lung of any visible tumors!
4. Jake's bone marrow will continue to simmer along at a slow enough rate to not harm his organs, but to get the cancer entirely! His GVHD will slowly improve, with his skin color looking more normal, his bilirubin returning to normal so his liver is healed, and his skin looking more normal in texture. Most importantly, Jake will FEEL good!
5. Jake will have a quick recovery from his tumor ablation. He will be released in a day or so and back home by the weekend or early the next week. (Now that we know that we have a boater on our hands, we have plans to make!!) Don is more pressed with being at work, so we need the recovery to be smooth and easy, so Don won't have to grieve being away.
6. Sorry, I need to sneak this one in... MO's back to be healed!! I have a herniated disc, and my job includes lifting children and adults with severe physical disabilities on a daily basis. I also have a precious nephew who has to be carried everywhere. I NEED to be touched by God and healed of this pain! I BELIEVE HE can do this for me.
7. Well, this one is easy....
COMPLETE healing on this earth for Jake! I saw more of his personality today.... more of his spunk... more of his smiles! I can see Jake healed and back to normal. I can see his playing tee ball. I can see him riding that tube behind the boat!

I will be calling for a lot of prayer this week. Many of the people who previously wrote in daily have not been signing in. Go ahead and send out your emails, faithful ones.... tell everyone to check in this week, because I hope to have lots and lots of people praying for the single purpose of Jake's successful surgery and complete healing from cancer! We so appreciate your support. It brings great comfort to know people are praying for Jake!

Well, there you go... be looking for those pictures! They are fab! Hope you have a great Sunday with your families. Staci and I will be at LSU in Shreveport all day for meds and blood. This means no trip on Monday.... so Staci may at least keep one of her doctor appointments.

Sign on and give us some inspiration from your sermons or from scripture that inspires you in church tomorrow. We will be missing church, so we would love to hear! That means you too, Carey Winters' class! Miss ya'll.

MO

Friday, September 8, 2006 8:34 PM CDT

Evening, folks.

Jake, Staci, Todd, and I just polished off some Johnny's Pizza and are settling in to watch "Fashion Rocks" on TV. Staci and I are laughing at our own "fashion" in Don's oversized tee shirts... always ones to be "fashion forward"... that is us!

Jin, Jake, and Staci went to LSU today for labwork and meds. It was originally said that he would not be able to get the blood, but later, when it was made aware that it COULD be administered today, it was getting late. Staci said his blood has so much special stuff that has to be done to it that it is just such a long process. His hemoglobin is low, meaning the red cells that carry oxygen around his body. When it is low, he is usually just really tired. As a matter of fact, he is doing a lot of hanging out on the couch. But... there was a little window of opportunity where Mo and Jake had some special time. We cruised the neighborhood with the windows down and jammin' to some DOn WIlliams. It was a spiritual moment for me! Me and Jake, good tunes, the wind on our faces, and no worries! We later picked up his mom and went to deliver a few dishes to people who have so graciously supplied dinner this week. Thanks, Cindy Tatum and family, Paula Ford and family, and Shad and Mandy Green. We have had us some good eatins this week!

Oooh, you should see Todd and Jake jammin to Beyonce. Jake is laughing out loud as TOdd has him wrapped in a blanket and is doing some craaaaazy dance moves! By the way, we also had to make a gum stop. Jake got like, maybe, 7 new packs tonight! He samples each, spitting them out within the first few minutes of tasting. We have a mountain of chewed gum here!

Hunter and Hayden went with Jin to the Rebel football game. You know, with starting middle school, it is very important to make all of these social events, looking good! They have a new favorite pasttime, playing pingpong with their Uncle Todd. It is becoming a little obsessive, and I mean with all three of them!

Don Don is working the evening shift, so he will be home at 10:00 pm tonight. This messes up his ability to go with them to the hospital, because they won't be back before he starts his shift at 2, and then can't hang out with all of us at night. Yes.... Todd and I just hang out here EVERY SINGLE night!

May I say, as his very proud aunt and physical therapist, that Jake walked in a walker tonight ALONE! Only a couple of steps, but YEAAAAAA, JAke! He has not had the strength to stand alone in a while. He also rode his trike down the driveway alone. I think he doesn't want to try things because he assumes he can't do them. When he was standing alone, he had a grin ear to ear. He also found a way to balance himself and look FAR over his shoulder to make sure that everyone saw him riding alone in his front yard. My cup runneth over!

Well, Staci cancelled her dental appointment, so her teeth may just indeed fall out! I guess we need to start planning another chicken spaghetti fundraiser to buy Staci some false teeth. Cindy, could you get on that?

Lisa Tanner, Cole's mom (A St. Jude buddy), and her scrapbook friends made a really awesome scrapbook for Jake and sent it to him. It is great. Lisa, tell your friends how much they love it, and that Mo is thrilled that that helps her get that much farther ahead in the project. I have about 6 full scrapbooks completed, and have hundreds of pics not in them! Oh, well, ain't nuthin but a step for a stepper.

OK, be looking around town, locals, for the St. Jude Heroes running every week and particularly every weekend. Jake's Pops made new signs for our friends, Gus, Allen, and Corbin so there teams will have cool signs too. Some of the signs say, "Honk if you see a St. Jude Hero." They will be in the Forsythe area tomorrow morning. Of course, they start somewhere around 6:00am, so sane people are still in bed! But, if you want to check em out, head that direction, and honk to support...better yet... hang a check out the window made out to St. Jude!!

We have big plans for tomorrow. Can't tell you yet... but stay tuned. Hint: Terry Hamilton as "Captain Streuben"
Cindy Foust as "Julie the hostess", and Shelley Hamilton as "the token blond bombshell". Mel and Staci, in their cute tankinis, along just to beautify the area.

Pray for Jake to feel good tomorrow so he can have a fun day. He has LSU all day on Sunday, then off to St. Jude Tuesday, to prepare for another procedure on Thursday. MO

Wednesday, September 6, 2006 11:31 PM CDT

Guessssssssssssss whoooooooooooooooo!!!

Yep, It is me, MO! I am "back" in action. Just a brief hiatus with a "large herniated disc" and we are back on go. I can't believe my runner, Eddie Enlow, is now the "cheerleader" too. I am making a comeback, Eddie, just give me a little time. And may I add.... my husband loves me greatly to do all he has had to do for me in the past few days... thanks, Todd the bod! Also thanks to all who have provided meals for us. Kinda funny that they would think that MY being down would have any effect on our dinner plans! Jin rushed home from Memphis to help "her baby", to which Jake enjoyed calling me and saying, "Cry baby, cry baby, suck your thumb." She knows me best as she got me some home-cooked Captain D's. Awwww, mom!

Jake is home home... Mo, Hunter, Hayden, Jin, and Todd were all HIDING (just the way he likes it) when he came in the door. They got a little bit of a late start this evening from Memphis because they had a long day in the medicine room. He had to get the antifungal treatment that he gets three days a week. He had to get albumin for some reason (I suppose his is low!), platelets, and another med that is a monthly deal to prevent pneumonia. HIs ANC is really high, so he is theoretically out of harm's way with regard to infection. However, the ANC represents white cells, but because they are immature, they don't truly demonstrate his actual immunity. Now, closing in on midnight, we are all piled up in their den and all is well in the Raborn world. He just cheated on me and got in his Jin's lap to open some packages and cards that were awaiting him. Thanks, Angel Penni. Jin is also reading to him out of his new Bible from Mark and Mylissa Horrocks with Habitat for Hope. They are reading about baby Jesus being born.

Jake's bone marrow is definitely kicking now. Remember, without it being active, their is no "anti tumor" effect possible! However, as it gets too aggressive, it will cause damage to his organs in the way of GVHD (graft vs. host disease). We started seeing it in his skin, then his liver started showing signs of rejection. The way we can know how much is too much before they slow it down a knotch is to check all his blood levels. For the liver, it is his bilirubin. When his eyeballs start looking a little like mustard, that is usually a good sign that bili is up. I don't know the exact number for a norm, but it is something like .5. That is POINT 5. Jake's rose to 16 on Monday, then stabilized at 16 Tuesday. then dropped to 15 today.... alrightly then... a "plateau", then a drop. Cool! But, Dr. Leung decided to send Jakipoo home on a mild steroid to keep the potential of GVH at bay. His skin GVH is gone! Poor guy, though. His skin is soooooooo scaly and dry. His color is a little odd too. He says he can hear better, and Staci says maybe time will tell, because if there is a change, it is slight. He is one of his sweet, sweet moods, just being very quiet and content, and letting his Jin hum songs to him and kiss his head.

Staci got her first speeding ticket between West Monroe and Memphis since this all began. I gotta say, that is also a miracle! That it is the first! Must've been a cop without much sympathy. Oh well, can't complain. She was just under the speed of light, I think. She was homeward bound!

The big boys are fired up to have ol mom home! They were hard to get calmed down. They had to get in beddie bye though, because tomorrow is a school day. Staci will be taking them to school bright and early. Then, there is a day of appointments for her... many are overdue, and we are trying to get her to go before her teeth fall out ( or her womb), if you know what I mean. Can you guess her appointments?!

Daddy Don will get to sleep with his son AND his wife tonight... what a good night!

Well, Jake has a few days home, then back to St. Jude on Tuesday to prepare for radiofrequency ablation next Thursday. Wednesday will be PET scanning! Come on, marrow... get it all!

Alrighty.... keep on BELIEVING. Jake will be healed. Name it and claim it. God has plans to prosper him and give him a future. He says He hears the prayers of the faithful, and that their prayers can make the sick person well. The LORD will raise him up. Whatever we ask for in prayer, BELIEVE we have received it and it will be ours! AMEN...

MO

Tuesday, September 5, 2006 11:31 PM CDT

Just returned home from Memphis and all is well - I guess. Jake seems to be getting stronger by the day. He is wanting to eat more and he is trying so hard. '

His lab work has been OK. His liver functions are still rising and he will more than likely go on oral steroids. His platelets are holding longer and longer. His electrolytes are fairly stable. His AFP(Tumor marker) is now 8600. It is rising but we hope the ablation on the 14th will handle the core of that and the bone marrow will sweep this disease away forever.

Prayers are needed for this next week as Jake needs to be strong as he heads back for another major event in his life. This will make the 10th major surgery/procedure in his 4 years. He is such a true warrior.

Jake and Staci should return home to West Monroe on Wednesday and stay for a few days before we head back to Memphis for the ablation.

Keep Mo in your prayers too. I think she is feeling a little better. We need her back at full force as she wears many faces(PT, Big Sis, Aunt, Head Journal writer, etc.) in this journey.

We will put out detailed prayer list this week but for now just pray for Jake and his complete healing here on Earth.

BELIEVE,
Don

Sunday, September 3, 2006 5:40 PM CDT

All is well in Memphis. We have just returned to the Grizzle House and Jake and Don are settling in for a nap before Big Brother comes on. Jake loves that show! We headed out this morning for labs and Jake just did not want to go back, so off to town we went. Jake's appetite has surely come back. We stopped at Mcdonald's, Taco Bell, Pizza, Auntie Annie's pretzel's, Wendy's and IHOP and all of this before 3:00. Jake eats a little at each stop, so it's hard to tell him no. With all our left overs, we could feed a small country. This child is literally eating us out of house and home HAHA!!! Just kidding whatever Jake wants, Jake gets!!!!!! We need every single calorie. The nutritionist wants us around 14 kilograms. Jake is at 13.2 as of today.
Jake's liver counts are still rising. Please pray that they start on a downward fall. I'm sure if they continue to rise, there's a chance we won't go home this week. YUCK!!!!Jake has gotten use to being home and has reminded me several times that we are going home soon. I just shake my head yes and PRAY!
Wow I love the response the heros are getting. So many have asked how to donate, well C. Click on "visit team Jake" on Jake's site. Then directly under the group picture, you will see "visit individual sites". click on the hppt bar under that and wham o your there!!! Pick a person and click on their name. It's that easy. I encourage to you to check out more than one person. Their stories about why they chose to run are very uplifting to read. Like I said before, some have never run a day in their lives. These guys are working their tails off and for such a great cause. Speaking of, did you know this is childhood cancer awareness month. If your taking your family out to eat, try Chili's. They have kicked off their color a chili pepper for St. Jude event. Don't forget to put Jake's name on the pepper. Last year Chili's collected them all and made a book for Jake. It's really cool and a great keeep sake for him later. At the end of the month they will have a day when all the profits for that day will go to St. Jude. I will keep you informed as it gets closer.
Thank you to Melissa and Mark from Habitat for Hope. They had us out last night and cooked us a home cooked meal. YUMMY!YUMMY! It was great to just kick back and relax. Just like we were home. We intend to spend Labor Day with them too. They have a great place and Jake loved riding the 4 wheeler with Mr. Mark. Thanks guys, we needed it.
I better head back up stairs. I'm sure we are getting close to wanting something else to eat. It's been a whole hour. I'm sure the king is starving.
Believe,
Staci

Thursday, August 31, 2006 2:37 PM CDT

UPDATE - FRIDAY, SEPTEMBER 1, 4:00 P.M.

Jin Jin here with an update that will probably jump all over the place because I have a lot to say, but so little time. I didn't want to erase Staci's update in case it hadn't been posted long enough for everyone to read. I'm in the computer room at the Jude while Staci and Jake are in the medicine room. I'm keeping a watch on the timer that kicks us out after a short time, so I may abrubptly end at any time!

Let me first welcome Caroline from Hong Kong. Thanks for keeping up with Jake. I love your city and would love to vacation there again.

To A (or C?) who wants to know how to support Team Jake - Go to "Visit Team Jake" above the journal and go from there. If this is not enough information, please post again and I'll be more specific when I have more time.

Ok, now to Jake (and 8 minutes left!). Today was a good day (other than the length of time spent at St. Jude). He got his platelets early, but we weren't scheduled to see the ENT until after 1:00. We went to the front lobby to sit for awhile and lo and behold, we heard the loudest noise. It was about 500 bikers from the Southern Cruisers Riding Club who make an annual trek to St. Jude. Jake was VERY interested. Many of the men and women seemed to be attracted to Jake (I can't imagine why!) and came up to him to say hello and ask about his "journey" here. Many of them were passing out freebies and Jake scored with 2 biker bandanas, 2 collector pins, and a biker vest (but this one had crayons and a small drawing pad). He wasn't ready to leave from the front of the hospital, but Staci came out and said he had been called to the ENT.

Had to post, wait for the computer to reset, and now I'm back.

Ok, now about the ENT visit. Jake's left ear had a lot of soft wax and it was easily removed. The right ear, however, was a different story. We had been told earlier that it was completely stopped up and I can now verify that. Oh my goodness - what came out of that ear! It was like a small plastic plug made of hard ear wax that was more difficult to remove. It was about 3mm in diameter, and of course, there was some soft matter also. This has to be the reason the poor baby has had so much trouble hearing! Staci and I did our own experiments when we got settled back in the medicine room for the second time today (this time for Ambizone). We think his hearing has improved. But time will tell.

Jake is anxiously awaiting for Daddy Don to arrive. Hunter and Hayden are not coming because they are going dove hunting this weekend with their dad. Here's a little tidbit about both of them that let's you see some of what Staci still has to deal with. When taking Hayden to school last Tuesday, Staci noticed he had been quiet all the way there. Just as he opened the door to get out, he asked her when she was coming back. She explained that hopefully she would be back the next day, but if not, it would be early next week. Of course, the tears started and the day got off to a rocky start for both of them. Hunter, meanwhile, has been having migrain headaches more frequently than usual. He has already left school twice this year. Today while in the medicine room, Staci got a call from him while at school and he wanted to know what did he usually take for his headaches. Well, he knows that already, but I think he had to let Mom know that he was suffering a little and needed to hear her voice. She immediately set up an appointment for the end of next week for another MRI to see if anything has happened since his last one. Just a little "looksee" into her world.

Now, on to Mo. Ya'll are going to feel so bad about calling her out when I tell you she was also having an MRI today of her back. She has hurt her back several times in the last year, but now she has done it again, and this time, it may be pretty serious. Her job entails her to lift patients (and some are dead weight), and she knew this might come one day. So, prayer warriors, please put ol' Mo on your prayer list, too. I'll update again when I know the result of her MRI. She is in quite some pain. She won't hold all the harrassment against you if you tell her you've got her back, no pun intended!

I need to go because Jake and Staci have already returned to the Grizzlies House and left me at the Jude. I had better go see what THE BOSS wants or needs because he certainly is one impatient little dude.

Thanks for keeping on with the prayers and please continue to BELIEVE.

Jin Jin




Hello to all from Memphis. Jake as I type is asleep in the med room with JinJin getting blood. His hemoglobin was 8.3, not quite low enough for a trasnfusion, but we opted to go ahead and get some for a much needed boost. His platelets have held since friday, Praise the Lord I think his bone marrow is starting to come around. We have an appointment to see the ENT doctor tomorrow and get his ears cleaned out . Bless his heart they are so clogged up, it is causing additional hearing problems, and Lord only knows we don't need anymore. The ENT will not touch his ears unless his platelets are greater than 100, so we will get platelets tomorrow morning before the appointment.
I often wonder how I made it in this world before St. Jude with my other 2 boys. I guess we all live in the dark until someone turns the lights on! Were their platelets up when they had a procedure done? Are better yet was their ANC high enough to have an icee? How about school, oh Lord at the germs. Do they need to where mask on certain days to avoid potential problems? Living in this world is certainly an eye openener. When I leave my house and come to St. Jude it's almost like traveling to a different country. I have a whole different group of friends, with different conversations and different problems. When I head home I try to settle back into a normal routine. Live life much more laid back(if you can imagine that). I guess you could say I am somewhat of a super hero. My power is 2 identities. I'm lucky enough to get to view the world from 2 perspectives.Everyone has ups and downs, I guess all that matters is how we handle our problems. I took mine to God and he lead my path to St. Jude and he put me in contact with all my wonderful friends here, he lead Jake down a path I was so scared of, it was dark and full of monsters, but through that we have come across our carinbridge family. They have held our hands the whole way through and kept the faith alive when I thought I had none left. For my friends at home, well I just can't say enough about you. You have been there trough thick and thin. You guys make living in West Monroe HOME HOME. For that I say WHAT AN AWSOME GOD I SERVE!!!
I'm not sure how I got to rambling so much, I guess it's all the questions about how I do it. The better question is what would you do? God never gives us more than we can handle, RIGHT??.Although sometimes I feel the need to tell him I might have reached my limit(haha).
Well Jake has been feeling much better. Not sleeping as much and wanting to go and do a little more. Paige Reed, we would love to see you this weekend. We are not inpatient so you will need to call us. 318-376-2132. The weather here has been awsome so I hope to do some fun things this weekend. We would love for you to catch up with us.

The St jude heros are doing great! They have raised more than 17,000 dollars for St.Jude. How awesome is that. If you haven't gotten involved I encorurge you to do so. You don;t have to be a runner. The whole goal is to raise money for this wonderful hospital. Call your friends and family and remember it doesn't have to be a big gift every dollar helps. Just click on a name and donate. It's that easy. All the money goes to the same place so I suggest you find someone who might be struggling to meet their goal and help them out. It would be a great way to boost someone's run today. Make them feel like their efforts are appreciated. Some of these people have never run before. It's kinda like a pay it forward type thing. "If he can do it so can I".

Well mom just called and Jake wants his mamma. I hope to get back to computer later and finish my journal.
Much love to all'
Staci

Thursday, August 31, 2006 6:38 AM CDT

Jake must stay in Memphis through the weekend to be monitored by the medical team. His GVHD is moderate but they don't want to put him on any more meds now that might slow the bone marrow down. He has to stay there in case it gets worse.

His AFP has climbed to 7530. Last reading was 5200. Not good but bone marrow working and RFA on 14th should take care of rising AFP.

Staci and Jake both seemed to be doing OK. I will head out Friday to join them for the weekend.

I guess Mo has quit journaling. I'm pretty sure if you call her out in the guestbook she will return. She has a way of making you feel that you're right there. Sorry I can't do that.

That's all for now. I'm off to bed. One more graveyard shift to go and then I'm off to see my little hero.

PLEASE PRAY.

BELIEVE,
Don

Thursday, August 31, 2006 6:38 AM CDT

Jake must stay in Memphis through the weekend to be monitored by the medical team. His GVHD is moderate but they don't want to put him on any more meds now that might slow the bone marrow down. He has to stay there in case it gets worse.

His AFP has climbed to 7530. Last reading was 5200. Not good but bone marrow working and RFA on 14th should take care of rising AFP.

Staci and Jake both seemed to be doing OK. I will head out Friday to join them for the weekend.

I guess Mo has quit journaling. I'm pretty sure if you call her out in the guestbook she will return. She has a way of making you feel that you're right there. Sorry I can't do that.

That's all for now. I'm off to bed. One more graveyard shift to go and then I'm off the see my little hero.

PLEASE PRAY.

BELIEVE,
Don

Wednesday, August 30, 2006 8:14 AM CDT

Just dropping in to let you know that Jake is in Memphis today for clinic. Jake, Staci and Jin left Tuesday and if everything goes well then they should return home tonight.

He is feeling a little bit better each day. He is eating more but still not enough by no means. He is asking for more things so hopefully his eating will increase.

As always, Staci is doing an amazing job of taking care of Jake 24/7. She fights so hard for him. She is completely exhausted but will never give up. Drop her a line and let her know you're thinking about her. She is one amazing mother.

Click on "Visit Team Jake" and support a team member. The team is doing some awesome things. It's so fun to watch the team grow. Keep up the good work team. You're helping to find a cure for these kids.

I will add an update later after Jake's appointment.

Thanks for always being there.

BELIEVE,
Don

Saturday, August 26, 2006 11:40 AM CDT

UPDATE Saturday 8:30PM

Just got a phone call from Longview, TX and The Raborn Rumble was a huge success. Over 9,000 was raised for Jake's Medical Fund. Staci and I are speechless. A big thanks to Mike, Pam, and the whole gang in East Texas. You should be so proud of what you've done. I know you're exhausted but know that we are so grateful.

Thanks East Texas!!

BELIEVE,
Don



Golllleeeeee, Give a girl a break! I went to an all nighter scrapbook party and just ran home to bathe. I decided to stay up til around 4:00am, convinced I was going to drive home. Instead, I ended up crashing there and driving in (late, mind you) to the pancake breakfast this morning. Staci, the boys, and Mr. Jakeman also showed up around 9:30ish. Don got in from his graveyard shift at 6:00am this morning, then headed to Ruston to speak to a group at Chili's restaurant. Chili's has made a commitment to St. Jude to raise 50 million dollars in the next (5?) several years. They do this with their chili pepper coloring sales and then one day (I think it may be Sept 25 this year), ALL proceeds go from every Chili's goes straight to St. Jude. Our family eats there twice on that day! Anyway, all the excitement is over for the morning, and I am heading back to the cropping... unless when I stop by Jake's he wants me to stay!

His eyes are pretty yellow... one can assume the GVHD is in his liver causing the jaundice. His skin is still covered in red, but he is not complaining with it too much. When Staci and Don took Jake to LSU yesterday, Dr. Jeroudi thought it was time to put "the duty teacher back on guard" (remember, that is how Dr. Leung describes the steroids or other immunosuppressors). He was sure that Jake's GVHD was bad enough to kick up the protection a knotch. The whole bone marrrow transplant thing is all just a big balance of how far can we let it go before it is dangerous! Anyway, he said he would call the expert, Dr. Leung. Dr. Jeroudi held the phone away from his ear and asked Staci, "Is he miserable?" Staci said, "maybe a little uncomfortable, but not miserable". He said just up the Tachrylimis (oooh...sp?!), and keep on truckin. He suspects that when Jake gets to St. Jude on Tuesday, he will be admitted for a couple of days to get high dose steroids to chill it all out. I told Staci when I saw him this morning... he is looking pretty close to miserable to me. She said, "Nope.... believe me, I KNOW his miserable." She is right!

Jake's platelets had dropped to a point of needinga transfusion, but he seems to be going a little longer everyday without needing it. His red blood cells were holding their own, and his ANC is still over 3000 without the G shot. So, his bone marrow is doing SOMETHING! Please, Lord, let it be seeking out some cancer cells!!

OK... time for our Simple Seven. They may not be all that different from last week, but certainly, we will update as to not have the crazy ladies from Texas calling (Linda and Jane!)
1. Jake will get stronger. He will want to try walking, riding his trike, and standing more. He will have success which will make him want to try more.
2. Jake will eat more. He will get more nutrition and maybe get to come off that feeding tube. Ya know, he doesn't complain at all of that thing, and quite frankly giving him his "oral" meds is sho nuf easier with it! But... I can feel his backbone and he is sooooo skinny! So, he needs to eat!
3. Jake's bone marrow will continue to produce all necessary blood cells (red, white, and platelets) giving Jake a break from being hooked up for transfusions hours at a time! And increasing the risk with every transfusion for a reaction.
4. Jake's bone marrow is kicking some cancer tail! When they go back for his pre surgery scans, wouldn't it be awesome if they say, "where did they go?" Lord, let it be.
5. Jake will be protected from fungus, germs and anything else that could cause possible infection or danger to his body where his weak immunity is concerned.
6. Jake will not have severe GVHD of any of his vital organs... liver, lungs, gut,... He will stay on a "slow simmer" so the immune attack is on, but only enough to kill it some cancer, not enough to harm Jake or put him in danger's path... Surround his organs, angels... we Believe!
7. Jake will be healed completely on this earth. That day is coming. We are marching on through that desert with an unshakable faith! There are thousands with us, even though we can't "see" you. We are walking through doors as they are opened and praising God that there was one there!

Ok, let me say a big ol thank you to all the folks who came out to eat and serve pancakes this morning. Our TEAMJAKE is GROWING! There are more signing up everyday. I tell you what... that marathon is going to be something to behold, with 80 people out there walking, rolling (that is for you, Jake B. and Summer), and pushing (that is for you, Mark B.!) wearing Jake's support shirt for inspiration. Keep it up, guys... you ROCK!!

I have let the cheerleading thing slack. I will get on it this weekend. There are some who have still not been paired, some who had wrong email sites, and some who are waiting to adopt a runner... Thanks for your diligence. I promise to get moving soon! Gooooo Eddie Enlow! (my runner!) Oh, how bout thousands pray for Eddie's knees! He wants to up his mileage and resume running from walking, so please pray a healing from any pain so he can continue on his merry way! Thank you, Jesus.

OK, I am off like a dirty shirt.
Mo

Saturday, August 26, 2006 11:40 AM CDT

Golllleeeeee, Give a girl a break! I went to an all nighter scrapbook party and just ran home to bathe. I decided to stay up til around 4:00am, convinced I was going to drive home. Instead, I ended up crashing there and driving in (late, mind you) to the pancake breakfast this morning. Staci, the boys, and Mr. Jakeman also showed up around 9:30ish. Don got in from his graveyard shift at 6:00am this morning, then headed to Ruston to speak to a group at Chili's restaurant. Chili's has made a commitment to St. Jude to raise 50 million dollars in the next (5?) several years. They do this with their chili pepper coloring sales and then one day (I think it may be Sept 25 this year), ALL proceeds go from every Chili's goes straight to St. Jude. Our family eats there twice on that day! Anyway, all the excitement is over for the morning, and I am heading back to the cropping... unless when I stop by Jake's he wants me to stay!

His eyes are pretty yellow... one can assume the GVHD is in his liver causing the jaundice. His skin is still covered in red, but he is not complaining with it too much. When Staci and Don took Jake to LSU yesterday, Dr. Jeroudi thought it was time to put "the duty teacher back on guard" (remember, that is how Dr. Leung describes the steroids or other immunosuppressors). He was sure that Jake's GVHD was bad enough to kick up the protection a knotch. The whole bone marrrow transplant thing is all just a big balance of how far can we let it go before it is dangerous! Anyway, he said he would call the expert, Dr. Leung. Dr. Jeroudi held the phone away from his ear and asked Staci, "Is he miserable?" Staci said, "maybe a little uncomfortable, but not miserable". He said just up the Tachrylimis (oooh...sp?!), and keep on truckin. He suspects that when Jake gets to St. Jude on Tuesday, he will be admitted for a couple of days to get high dose steroids to chill it all out. I told Staci when I saw him this morning... he is looking pretty close to miserable to me. She said, "Nope.... believe me, I KNOW his miserable." She is right!

Jake's platelets had dropped to a point of needinga transfusion, but he seems to be going a little longer everyday without needing it. His red blood cells were holding their own, and his ANC is still over 3000 without the G shot. So, his bone marrow is doing SOMETHING! Please, Lord, let it be seeking out some cancer cells!!

OK... time for our Simple Seven. They may not be all that different from last week, but certainly, we will update as to not have the crazy ladies from Texas calling (Linda and Jane!)
1. Jake will get stronger. He will want to try walking, riding his trike, and standing more. He will have success which will make him want to try more.
2. Jake will eat more. He will get more nutri

Wednesday, August 23, 2006 8:37 PM CDT

Yesssss..... the days are still getting better!

Jake is still lying on his mom's lap on the couch, but he is just sounding more "spunky". His brothers are torturing each other in the den, and Jake laughs at them and makes the "crazy" sign by circling his ear with his index finger. He has tried a few bites of spaghetti, a few bites of Hamburger Helper, and we are now awaiting a pre-heated oven to put in a pizza. You know the old expression, "beggars can't be choosers"? Well, I ask that to make it clear that Todd and I are NOT complaining since we stop by here on the way home from work everyday, and don't leave until we are sure that everyone is really going to sleep. That means we eat at their house every night. Tonight, Todd told Don it felt like we were having one of those progressive dinners where everyone cooks something from a different country... we had some sort of two layer taco surprise (Mexican), spaghetti (Italy), and Hamburger Helper (American!!). It was deeelish.

Jake had a busy day. He started out with his dad and PawPaw Raborn heading to Shreveport. They stopped by "the donut shop", but he couldn't really eat any. Then, he had his appointment, where his platelets are holding their own, but because they are falling, they have already ordered him a bag for Friday's appointment. His ANC is 4600 and his red cells are UP! Come on, bone marrow... get with it! The negative is that his bilirubin and other liver enzymes have quadrupled. Don's best guess is that Jake is having some GVHD of his liver. We have been wanting the bone marrow to start working to produce some blood cells and get active against the tumor/cancer, but not so active that it attacks Jake's organs. Keep up that prayer, please. Jake's skin looks pretty bad. He is covered in what looks like measles, although some areas are a "sheet" of inflamed skin vs. little bumps. Don started using a new cream, and it seems to be giving him some relief from the itching and aggrevation. Bring it on... we are in it for the duration, and are waiting for the healing! God is who He says He is and can do what He says He can do.

Did I forget to add that he, his mom and dad all went to Maggie Moo's for ice cream when he got back to town? Staci had a day alone! She spent it doing laundry and cleaning out Hayden's closet. Yesssssss... now that sounds like fun! Don really gave Staci a break by also coming home and giving Jake a bath, changing the dressing on his buddies and changing the dressing on his NG tube. Don said Jake said, "Boy, I feel GOOD !" Then he brushed his teeth too. When I was praising him for all of this, he told me, "Mo, my dressing was easy tonight. It just came right off. Hunter held my hand." Sidenote: Jake always has to have someone hold his hand when getting his dressing changed, because as I think I have mentioned before, two years later and dressing changes still bring tears!

Oh, more good news is that Jake hasn't thrown up in two days! Praise the LORD!

When I called on my way home from work, I could hear Mr. Jake in the background asking who was on the phone. When they told him it was me, he yelled, "Heeeeyyy, Mo!" His voice even sounded stronger! Then, he requested some gum from the store. $12 later, he had all kinds of gum to choose from! We have chewed about 10 different kinds and wrapped them all in medical tape to see how many we can collect, (I guess)!

Well, it sounds like the softball tournament is going to be a big hit! Thanks especially to all who are helping organize it and to those Believers who have bought raffle tickets. Only a few days left. Check out the link above for more info. The Applebee's St. Jude fundraiser will be Saturday morning. TEAMJAKE will be serving the pancakes, and they are all you can eat for $5.00. You can still buy a ticket by calling Dawn at 318-396-1969 or walk right up to the door on Saturday morning. Come on out for breakfast!

And one more little thing... Staci and I have more crosses and pendants to paint, and we are about to get started on a whole new crop. There will be more crosses and pendants going out by the weekend. Thanks for your patience. This project snowballed quickly, and we never anticipated the number of people to order that did. It was pretty exciting and overwhelming! Thanks so much.

Gotta go... Jake is getting sleepy, and his pizza is coming out of the oven.... Ciao! (That is Italian for "goodbye!")

MO

Um-hum, Mrs. Jane "pushy-pants" Jones! There you go! Mo

Monday, August 21, 2006 8:35 PM CDT

Hellllllllooooooooooo..... everybody!

The days seem to be getting better and better. Jake is sleeping a little less everyday. He is playing a little more everyday. Today, around 9:00am,

Will finish in a minute... going to Jake's house, and Todd won't let me finish!! Blame him!! Mo

Ok, I am back! Jake is in the sack, and Staci is trying to get the tow big boys convinced to follow suit! Around 9:00am, Jin showed up at my office with a little polka dotted bald headed kid in tow. Apparently, Jake had been up since 5:00am. He was wide-eyed and bushy-tailed, and Staci was about to pull her hair out. Yipppeeee for Jin's retirement. Staci called for reinforcements, and Jin came a-runnin! Jake was determined that El Chico's was open, and wouldn't rest until Jin agreed to take him by there to see for himself. I think the poor angel just needs some small degree of control of his life, and going to El'Chico's at 9:00am was what he needed to do! Good ol' Jin. We tried to play a little at the office, and Mr. Karl got a little activity out of Jake with balloon volleyball. By the time Jin got him back to the car, he was sick and threw up all over the place. I can't seem to figure out if he just needs to move MORE in order to get his vestibular system a little more acclamated to movement in general, or let him lie around. Any of us would want to lie still if we felt nauseated. As best anyone can figure, Jake is having GVHD of the gut. This can cause the upchucking. His GVHD of the skin is pretty horrible! It is not responding to the cream as well as it has in the past. Staci is going to call Dr. Leung tomorrow and is considering a 5 hour road trip to let him see it to ease her mind. He is not complaining of itching or hurting, but seems to just generally feel yucky! Even his eyes are all bloodshot from the GVHD. He let me come in and put his fuzzy braces right on without complaining. He MUST wear his braces if we are going to maintain the range of motion at his ankles to allow him even the potential of standing.

Our sermon yesterday was MEANT for the Jake Raborn family! It was from 1 Kings 19. We have been studying Elijah and learning what it means to have an unshakeable faith. After three years of diligently following God's commands, despite crazy odds against him, Elijah finally killed hundreds of prophets who bowed to Baal. Then, King Ahab, who also worhipped false gods, told his mean old wife, Jezebel, about Elijah and how he had killed all their men. She vowed to come after him with a vengeance. Elijah started running. He lay down under a Broom tree (verse 4) and said, "Lord, I have had it. I can't take anymore." Skipping a few important points, the LORD appeared to Elijah and said, "Elijah, what are you doing here?" A point was made to show that it this word for God didn't come in an earthquake or a great fire, but in a "whisper" and it was delivered gently. When Elijah responded by hiding in a cave, again, the Lord appeared and said, "Elijah, what are you doing here?" This time Elijah, discouraged, said, "I have been zealous for you. and.... now I am the only one left (the only one who believes in you.)" The LORD showed him that actually there were thousands still living there and believing in the LORD.

There are several points to this story that parallel Jake's situation. First, when our family feels sad and all alone, we can come to this site and soon remember that the LORD has assembled thousands to love and believe what HE is saying He can do for Jake. Then, a major point made by "Bubba Greg" (that is what Jake calls Brother Greg, our pastor) is that when we get discouraged or fearful, THAT is right when Satan says, "aha... now is my chance!" Our discouragement often comes right after a great victory. I certainly thought about Jake's up and down ride! Just when we are feeling a victory is imminent, a slam hits us in the face. But that is OK! We are pressed down, but not defeated! Then, I think of ol' Elijah spending THREE LONG YEARS facing draught and famine and BELIEVING God all along that He would provide everything he needed. ANd... he DID! SO, at year 2 and 2 months, we can certainly keep walking through that desert! We have thousands who are believing with us and awaiting a great victory! SO THERE!

Now, may I mention one other little thingy? I have messed around and not informed you all about a big fundraising event for TEAMJAKE this weekend. Applebee's in Monroe has provided us a way to use their restaurant this Saturday morning with a large chunk going to St. Jude. Many of our runners have not met their goals, so this is a way to help them out. They will actually be the waiters and waitresses on Saturday morning at the restaurant. The fundraiser is $5.00 for all you can eat pancakes! Jake's brothers, Hunter and Hayden, are two who will be there to serve! I will also be there, and if he feels ok, Staci plans to bring the star of the show! Some other St. Juders will be represented also (maybe even be there themselves).. .Allen Smith, Gus Kitchens, and Corbin Gulde. These are the other three local kids who have teams for the St. Jude marathon in December. Soooooo, we NEED your support.... and because I have waited way too long, I am asking you to call my office and talk to Dawn if you want a ticket... 318-396-1969. Her celli-telli is 318-381-4059. The Mr. Applebee's man needs a count tomorrow so he can order the appropriate amount of food on tomorrow's order. We want LOTS of people there. We tentatively have another pancake breakfast scheduled in September. Remember, this is all a St. Jude fundraiser, and supports the people running for Jake, Corbin, Allen, or Gus. It is not a Jake fundraiser. and... it is only 5 bucks a ticket! Buy one for you, your mom, your dad, your sister, your son, your cousin, your dog (Holly!), etc....

Thanks for continuing to pray for Jake. Focus of prayers... bone marrow to get active to fight cancer, GVHD to stay a slow simmer and not attack any vital organs, and improved strength. also... complete healing... yea baby! Mo

Saturday, August 19, 2006 10:32 PM CDT

Just checking in tonight to give a little more detail and to provide the vitally important Simple Seven! Honest to goodness, there hasn't been a whole lot of talk around the Raborn house about last week's scans. It just seems to be one of those times, that we aren't doing a lot of talking. Nothing wrong... just not really wanting to dwell on the negative. Also, maybe just coming up for a little air before going back to battle! As far as I can tell, Dr. Hoffer is the surgeon who ordered the scans last week. He is the one who did the radiofrequency ablation to the lungs three+ weeks ago. From what I can decipher from my conversations with Staci and Don, Dr. Hoffer saw two areas light up on the PET scan. The PET is the image that uses glucose to make a highly metabolic area (i.e. tumor) glow. One area glowed bright and big, and the other small. Dr. Hoffer has planned another RFA on Sept. 14th. It will be to get the big one. Jake also has another follow-up appointment on August 29th, at St. Jude. There were some other areas in the lungs that showed up, but Staci said she isn't sure yet what those were. I try to keep in mind a kid I learned about who lives in the northwest. He has had seven lung surgeries. He has had 3 (or 5?) brain surgeries. He has had 2 liver transplants. He is now 12 years old and cancer-free. Oh, and by the way, he had hepatoblastoma! So, as much as Jake has been through, it helps to know that there is at least one other kid who has been through that much too, and he has come out on the other side! In the meanwhile, Jake gets to lie on his own couch, watch his brothers play, and have his family surrounding him every night! He is sleeping right between his mom and dad with his hand up one of their sleeves every night! (Just like you visualized, Cousin Debbie!) So, no matter what scans show... no matter what storm... Praise the LORD that Jake is here with us tonight!

I have been doing a little study by Beth Moore aboot BELIEVING GOD... not Believing IN God, but BELIEVING... that He is who HE says He is, that I am who He says I am, and that HE can do what HE says He can do. When something is weighing heavy on me or is trying to attack my faith, I try to figure out which one of these "labels" I need to strap onto my shield of faith. Today, I am claiming, "He can do what He says He can do!"

The simple seven were originally started as a means of giving some prayer requests out for those who may want to print them off and take to Sunday School on Sunday mornings. I am providing these a little late tonight, so if you don't have time to do this tonight, please consider taking one and dwelling on it each day of the week this week.... seven prayer requests, seven days!
1. Jake will get stronger. He is getting significantly weaker. He will likely start therapies this week. We need Jake to feel like participating, so he can build up some strength to soon walk and play with his brothers.
2. Jake will feel better. His GVHD is pretty significant too. He has a rash from head to toe. Generally, he responds well to the cream, and it is keeping it at bay this time too. But, usually, it makes it totally disappear. This time, the rash is hanging around, but it is not making him miserable by causing an itch, so that is a praise!! We have always been told that a "slow simmer" of GVH is a good thing, because it means the bone marrow is getting after it! So, Please, LORD, keep it on the simmer. Please protect him from discomfort and from letting the GVH get any worse... particularly from involving his organs.
3. Jake's immunity will get stronger. He was on the G shot for a while, and I am pretty sure that he is not needing this right now. His white count has been staying up without the G shot. Praise the LORD! But, we KNOW that shingles, fungus, etc. like to creep in when the white count falls. So, Please, LORD, send your angels to protect Jake. Send them ahead of him, under his feet, above his head, to his sides, and behind him to protect him from any germ or potential infection.
4. Jake will have better hearing and speech. Jake was supposed to have his ear cleaned out this past week, but I believe the delay may have had something to do with his platelet count. ANyway, he didn't have it, and Staci has noticed that his hearing is poorer and his speech is becoming less intelligible. This would be an extra frustration for Jake, and one that I just think we can help thwart with prayer! Please, LORD, touch Jake's ears and make them more functional. Help him hear.... how much we love him, how proud we are of his accomplishments, and even his brothers fighting in the background! Give him speech to communicate more clearly.
5. Jake's lungs will grow stronger in preparation for the upcoming lung procedure. We are going to have PT and Speech both working on helping him breathe a little more deeply so he can get them as strong as possible, so that he can again go on and right OFF the ventilator when he has the RFA in September.
6. Jake's mood will improve. I know he is happy to be home, but quite frankly, he just seeems to feel pretty rotten! I think we can attribute much of that to the GVHD. He is also bound to be a little sad about not being able to move about and play. I, for one, miss his spirit. SO, I am selfishly asking for you to pray for his sweet, mischievous, funny personality to return.... and for Jake to be HAPPY!
7. Jake WILL BE HEALED. Let's all BELIEVE GOD to heal him. There are many, many scriptures where God proves himself a healer. We BELIEVE that the same God of yesterday is with us today. What He did then, He can do TODAY! He says He can do abundantly more than we could ever think to ask. He says if we ask for something, in FAITH, He will grant it. (For the prayer offered in faith will make the sick person well.) If we have the faith of even a mustard seed, we can move a mountain...and I think we can all demonstrate the faith of a mustard seed, don't you?! As usual, I need several more, so I have to combine them...
Jake and family will have perseverance. I know it is all getting tough, physically, on Jake to keep bouncing back... I think that is one of the reasons, we were all a little shell-shocked by this past week's PET scan results. And, it is getting hard, emotionally, on Don and Staci (as if it has EVER been easy!) to watch Jake keep on battling. There is no other option, though. Jake is going to beat cancer. He is going to have a testimony! Tomorrow morning, Staci and Jin are heading over to LSU in Shreveport bright and early to get him some platelets. Home health came by today, and they were low again. (If there were a simple 8 or 9, I would need to add... platelets to recover and stay up on their own, which is actually the donor marrow becoming functional.. hint, hint!) Who knows how long that is going to take. Staci is asking Dr. Jeroudi to go ahead and give him the dose of Ambizone that he is scheduled to get on Monday, so if his platelets stay up, he may actually be able to stay away from Shreveport Monday! Woo hoo!

If this update was all over the place, I apologize... lots on my mind! and... lots to pray about!

Leaving you with this...
We do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day.
2 Corinhians 4:16

Lord, Give Jake strength!
Mo

Friday, August 18, 2006 2:33 PM CDT

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

Going to airport to pickup Staci and Jake.

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

Just pray.

BELIEVE,
Don

Wednesday, August 16, 2006 8:37 PM CDT

10:22pm OK, I am back... I am done moping, and now feel like I got a little fight back in me. I just want to say that an AFP is just a stupid number, and our God doesn't let numbers help him dictate HIS course. So, with that, Jake has fought too dang hard for us to quit believing in him now. I just gave Staci a high five a few days ago and said, "Hey, guess what.... it is August... We are soon going to get to take yet another year's pumpkin patch pictures!" We both just grinned. Without too many words, we both know that basically, we just feel very blessed that Jake is still here. We continue to praise the LORD and give Him thanks for every single day that Jake is with us! Please, LORD, let this baby have a good day tomorrow... and the next, and the next, and then come back homehome where he belongs!! MO

I really do try to make sure that our updates are always upbeat and as positive as possible. Tonight, I am just really not "feeling it"! So, I will make it short and to the point... Jake's AFP has risen to 5,200. It was down to 2,500 at last check on July 24th. I don't really know how to "direct" you in prayer, but just to beg you to pray! Do we want clear scans? Knowing there is a rising AFP means more cancer somewhere, so do we really want to miss it? However, the bone marrow getting active may still be able to take care of cancer cells, but not tumors, per se. Soooooo.... I kinda think clear scans would still be a good thing.

On a good note, Jake's platelets, red cells, and white cells are hanging a little higher and a little longer. He is getting platelets tonight in preparation for an ear cleaning tomorrow, but hasn't had to have any since Sunday AM. That is progress... come on, bone marrow!!

Jake has been consistently throwing up now for a week. No real good answer as to why. (NOw,There is a prayer request... NOT be brain related!) Dr. Leung thinks it may be a little GVHD of the upper gut. He was "excited" to hear about all the skin rashes last week. Staci said his response was "Finally!" The bone marrow transplant is really what we are hanging our hat on right now! So for sure, pray that it can handle anything going on in that precious baby's body!

Will post tomorrow. Scans expected a little after noon. Mo

P.S. I am 37!

Monday, August 14, 2006 8:44 PM CDT

Ahhhhhhhh... we survived the first day of school. Jake is back home home and is sure happy to be there. Hayden was in hog heaven, accompanied by his mom to school, which has only happened about... well, Staci said she thought she could probably count them on one hand... the times she has taken the boys to school in the past two and a half years. Hunter actually starts tomorrow, and she will accompany him too. He is going to the middle school, so I am sure he has his whole wardrobe planned out. It has been a hoot watching him change from kid into "preteen" (his word!!). He pops his collar, flips his long bangs to the side with a violent head swish, and drags his too long jeans along behind him. ANyone empathize?!

Jake has been throwing up today and about once a day for the past two days. This is a little concerning, so Staci has plans to head right to the medicine room when she gets to St. Jude tomorrow. Their plane leaves at 4:00pm. She has had to rethink her carry on thanks to the new flying standards! As for Jake, well he MUST carry on his fluids... they are attached!

Don wanted me to be sure and thank Charlie Jones, the pharmacist at Walgreen's who filled Jake's script last night. He said he had been a pharmacist for 13 years, and had never been so nervous about filling someone's prescription before! He even made it super easy on Don and Staci by not only compounding a med for Jake, but also putting it in little individual syringes, ready to go. In the cancer world, their is joy in the simple things, that is for sure! Charlie also paid for it out of his pocket. What a blessing!

Now for some more thank yous.. thank you to Mrs.Ann Davis who provided sup-sup a week ago and again tonight! She and Mrs. Brenda Caldwell made Staci and Don's first night home quite welcome with a home-cooked meal. Then, Cindy Tatum made lasagna, which pleased everyone, including two "preteens", so that is just short of a miracle! Kacy, Jake was pretty pumped to come home to a box on his front porch yesterday. He loved his goody from Rainforest Cafe. Another Street roddin' family, the Gohens, sent a bunch of goodies and we have already been coloring car pages in his coloring book. Angel Stacey sent an egg that grows a plant... hmmm.... we will work on that at a later date, ANgel Stacey. I am afraid I will become the parent of such plant unless I wait til they are home to stay! New Directions Life Group of First Baptist sent some cashola, and believe me, that is still such a blessing!! Also, Grace Baptist sent some financial support too. Staci has every intention of sending a handwritten thank you, as she was a little overwhelmed at your generosity. Knowing her schedule, I am going to say, don't hold your breath, but on her behalf, Thank you all so much. Jollie and Betty Rogers, thanks for the Chili's gift card... that is a Jake AND Hayden favorite. Staci says she is going to miss ya'll, but hopefully she and the jakeman will be home more often, and will be able to come around the school a little more often.

I am not totally sure about how to get raffle tickets, but I looked at the list of goodies offered at the upcoming softball tournament in East Texas and was blown away. You can check it out at www.rabornrumble.com If you can help support it, I know they would love to have as many people buy raffle tickets as possible.

Well, please get on some praying for good scans and that Jake's labs just look wonderful and the docs are so amazed at how well he is progressing! Think big!! Think HEALED!!

I promise to keep you posted! Mo

Saturday, August 12, 2006 2:15 PM CDT

OK in light of all that has occured in the past week, this is "small potatoes", but Staci just lost her journal entry after pecking it out for you lovingly, (with her no typing self! Thanks, Jin, for making me take typing in high school against my wishes), and is about to freak! So that I don't have to call up a doc from another floor, the kind who helps people who have just pulled all their hair out, I am going to redo it for her!

Well, it has been a pretty crazy week, but it is, THANK THE LORD, almost over! It all started with Staci and mom taking Jake over to Shreveport on Monday for his check up and likely to get his platelets and labs. They dropped Hunter and Hayden off at a birthday party at Grant's house. Lo and behold, we get a call midday that they were going inpatient, so soembody would have to pick up the boys indefinitely. Poor boys! They are so used to rolling with the punches, that I don't think they were even all that phased. I thought Jake would be pretty sad, but Staci said he seemed ok about it. Pops picked up the boys and kept them until I got a call WEdnesday from Staci that Hunter was sick and wanted to come home. Sure enough, he had a stomach bug, and was vomitting and had the big D from the other end. Thanks to all the helpful people at my office (Beth!!), we were able to get Hunter to the doctor and on his way to recovery. As much as he didn't want to, he had to accompany me to work the next day and hang out in a semi-isolated spot in a bean bag as his "recovery room". That afternoon, when we got home, Hayden wanted to ride his dirtbike down from his house to mine, which I thought was ok since he is pretty good about hanging out in the yard. While out on the driveway, a neighbor's dog ran out in front of him and caused him to wreck. His poor little leg looks terrible! I used my experience in wound care, and he was good to go. However, a bath seemed to be out of the question due to the potential burn! After many tears, and calls to his mom, who couldnt' be here and apparently doesn't trust her sister, he was in the bed. Staci was insistent that I take him to the emergency room, despite my assuring her he would be fine. Just a mom's long distance precautions, I guess. She even called Jin (yes, Staci, I found out) to see if I had administered proper antibiotics and I think to see if his leg was going to rot off while under my care. After a late night trip to Target, getting to ride the scooter, which was Waaayyy cool and getting sized for unnecessary crutches, since his aunt is a PT and has such equipment handy, he, too, is just fine now! Don started back to work this week, so he was kinda out of the picture, working his weird hours again. Uncle Todd is on an extended vacation, visiting his family in Wisconsin (hey Molly and family!) and hopefully WINNING a golf tournament. For anyone who cares, he shot a 66,67 yesterday, playing the tourney course as a practice round, and going 36 holes....GOOOOoooo, Uncle TOdd!!

As for Jake, after seeing him SUFFER Sunday night, wihtout knowing what was the matter, I figured this week would be horrible! As it stands, Jake had a bad outburst with an episode of pain on Monday, Tuesday, and a mild one on WEdnesday. Thursday and Friday were pain free! Praise the LORD! I KNOW this is due to the many people who were praying for Jake. No one wants this baby to have any undue suffering! He has been through enough to have stupid shingles ruin his trip home! We thought he would be going home on Friday, but a visit from an LSU doc revealed that since he was a post BMT kid, he would have to have 7 days of the antiviral via IV. THey are working on the discharge papers TONIGHT, and his last dose of meds should be administered tomorrow morning!

We wish he could be at church with the whole fam again... because as I stated last week, it is a very FULL experience to have everyone there together. The ULM football team has heard of Jake and is rumored to be presenting him with a goody tomorrow at church. I surely do wish he could be there to receive it. Oh well, someone from the family will be there! THank you to ULM football and Dr. Skeet Creekmore who has rallied ULM athletics to support Jake. Dr. Skeet has also put Jake on the hearts and minds of the streetrodders across the world (www.streetrodding.com) and today, was present with his son at the Delta Sigma Phi house to host a blood drive for ol' Jakipoo and the many others who need blood products ona regular basis.

Jake is having a GREAT day! He is sitting up in the bed, playing a new Scooby Doo game with me, mom, Hunter, and Keelan. He has asked for "cheesesticks from Sonic, with white and red sauce" every day this week. and... every day he gets them! Only, today, he actually bit the end of one! Progress!! He is watching racecars on TV. He is somewhat energetic and still verrrrry bossy! Speaking of "bossy", Jake let a visitor know a little earlier that he had better NOT be leaving with his football! THe Pederson clan came by to visit, Jeannie and her three boys, brought Cane's chicken and Taco Bell especi-al for the Jakester! THanks for coming by to visit... Staci said Jake really had fun with the boys... probably felt like home to him! When I saw her boys fighting for "shotgun" in the parking lot, I thought to myself, "Yes... it IS normal for boys!"

Oh, last night, Jake's skin became red, bumpy and splotchy all over... definitely a little GVHD of the skin kicking up. I, naturally, was worried, but Staci reminded me that a "slow simmer" of GVH is a good thing. IT tells us that the bone marrow is up and running again! That is the only way we can hope that the BMT will be helpful in the anti-tumor war! SO, OK, praise the LORD, again!

With this being Saturday afternoon, let's lay out the simple seven for tomorrow at church:
1. Jake's shingles to be GONE! Even though he is getting out of the hospital, he will still be immunocompromised, so the possibiity of them returning is certainly there. SO, join us in prayer that they will NOT come back! And, that any little blister that is still there will dry right up and not hurt!
2. That the GVHD of his skin will continue to be handled by the prescribed cream, and it does not get any worse. Also, that the GVHD does not affect his vital organs... gut (been there done that and DO NOT want it again!), lungs (other than the cancer cells there), and liver!
3. I think a good prayer request is that Jake starts to eat. He can always tell me exactly what he WANTS to eat, but hten it gets here, and he just can't. You can see the "want to" in his eyes...and then even a little sadness when the food gets there. Usually, he will just hold it or sit it by him for comfort. Since I am holding it to seven, let me combine a few... he also needs to gain strength to resume walking and playing.
4. For Jake's blood cells to increase! He needs platelets, white cells for an ANC for protection, and red cells! Come on, new German marrow!
5. For Jake to remain safe against any bugs, germs, fungus, virus, and other such funk! He needs an ANC for this.
6. Let's not forget that the big boys start school this week... When Hunter heard that Jake may not get out when we were expecting, he got pretty concerned that his mom may not be there for his first day of middle school...as you know, that is a biggie, and for Hunter, is no exception! Pray that Staci is there for the needs of both boys this week.
7. That the scans on Tuesday at St. Jude go smooth as a baby's butt! We are certainly hoping for no tumors to be seen and an AFP that is cascading downward!! SInce I am stopping on Number seven, I am making this one long... the air travel world has changed this week, so let's pray that the plans for Jake to fly go off without a hitch, and because he totes many fluids everywhere he goes, that he is still able to fly, since Dr.Leung felt that was a necessary factor in letting him stay outpatient and stay home a while.

Thank you, TEAMJAKErs, for running this morning, and continuing to train for St. Jude. There were 20 runners who met at Cedar Crest Baptist this morning. We are going to be putting signs along their training course, so if you see a TEAMJAKE runner, honk at them to say you are supporting them. There are several upcoming fundraisers for St. Jude. WE are hoping to be the top fundraisers in the country for Jake TEAMJAKE has a 50,000 dollar goal. Right now, if you are to check TEAMJAKE above, you can see the 70 runners signed up. and more are to come... can you imagine all these people running for Jake with his picture on their backs, all 5 hours from home... how cool!! SO our locals can be proud, let me tell you abouyt Team Corbin and Team Gus who are also organizing for the race in December. The three of our local teams are three of the top five fundraisers for St. Jude marathon at this point in the game. Thank you to everyone who is running, cheering, or supporting this endeavor financially.

Ok, folksies, thank you for continuing to pray for Jake and BELIEVING in his healing. You can bet, we are right there BELIEVING in Jake's COMPLETE and TOTAL healing right here on earth. We are not afraid. Jake will finish the race. He will WIN this battle. AMEN and amen.

Thursday, August 10, 2006 11:29 PM CDT

Another late night quick update before I go to bed.

Just returned home from LSU and Jake is doing good. He will be discharged on Sunday. He must receive seven days of the meds for the shingles and then he will head home. Staci and Jake will have a couple of days at home before flying to The Jude for a round of scans.

I promised a long update and I'm sorry. I'm just tired and need to get some rest.

Keep praying for Jake. Keep praying for Staci. Keep praying for Hunter and Hayden.

BELIEVE,
Don

Wednesday, August 9, 2006 11:50 PM CDT

Real quick update as I'm headed to bed because 4:30am is right around the corner.

Just left Jake and Staci in Shreveport and everything is looking good. The rash has not spread much and he does not seem to be in a lot of pain. Possibility of being discharged on Friday but still too early to get hopes up.

Staci is doing an AMAZING job(as always)with Jake. Neither of them want to be there but they both continue to fight. I'm so proud of them.

Better update on Thursday from one of us. Sorry not much detail but I'm beat and headed to bed.

Still believing in my son,
Don

Monday, August 7, 2006 2:36 PM CDT

Update 11:40PM

Quick answers to a couple of questions:

Jake can only use A- because of his BMT. He can have others in emergencies. But please go donate all types. This will put more platelets into the system and possibly save a bag of A- for Jake.

Next answer is Jake is already on Neurontin for for several months now.

Just left him and Staci at LSU. He was doing OK. Grumpy and tired but I don't blame him. I really don't know how he does it.

Keep praying,
Don



Update 12:30pm Monday........
I just got off the phone with LifeShare Blood Center, and they are getting a huge response from Jake's Believers to give platelets. The problem is that they are having to turn them down if they are wanting to give specifically for Jake until they receive a prescription for platelet need from Jake's doc. I gave her Staci's number, so if Dr. Jeroudi does this, then it will OK to go and donate. It takes quite a while to donate... about 2 hours. ANother big deal is that the platelets only last 5 days. The first time you donate, there is some testing necessary, so they only last three days after that. The point to this is that everyone going today, or in the next few days is not as important as a trikle in for the next few weeks. If you call the center, 318-322-4445, Mary or Krystal can put you on their schedule. THis is not really a "drop in" type of procedure. Who knew?! Ok I hope this has cleared up some confusion. Thanks so, so , so ,so much to those who have already gone by to give. Please don't be dissuaded by our lack of understanding. Call, make your appointment, and go back! If you are from out of town, Jake's "account" can be credited IF you donate to a Life Share blood bank. In the case of being out of town, I believe the donation will need to be for whole blood products vs. only platelets.

I just got off the phone with Staci and apparently, Jake had just had an "episode". I could hear his sad little weak voice in the background and asked him if he was still crying. She said, "No, he is just saying, 'I'll feel better now.'" as the nurse was administering his meds to his buddies. He is such a SOLDIER! He is so precious!! MO


Update 10:00pm
Well, As you have probably read by now, Jake is in the stinkin hospital... again! I asked Mom if he seemed sad, seeing as how this is his week to be "homehome". She said, "No, he doesn't seem to be." I think by now, that poor kid just goes along for the ride. For everyone else, well... can you say "roller coaster"?! Staci saw a couple of blood blisters on Jake's shoulder blade around Thursday. They didn't really change, so she just kept an eye on it. Last night, he burst into screaming and was obviously in a LOT of pain. At first, it seemed that taking him into the sun was the cause of the pain. But by yesterday evening, it was hurting when he was jsut lying on the couch. Staci and Don decided to give him some Ativan, and when it finally went to work, he napped for the rest of the night. Anything to have him not hurt! SO, today, they went over to the hospital in Shreveport for the "check up" /check in. Jake's ANC is "high" per Staci, but that is really a weak immunity due to the G shot causing a somewhat artificial elevation of his neutrophils, which are white blood cells that help the immune system. (ANC= absolute neutrophil count). He is not having his AFP checked (hasn't in two weeks), because basically he is back under the orders of Dr. Leung, the bone marrow doc, who doesn't see the need in knowing it and even less need in worrying over it if it is elevated. (But we KNOW it is NOT!) He is the doc that went to bat for Jake to have the last procedure on his lungs, saying that he is responsible for the bone marrow transplant that he is expecting to be the cure for Jake. Anyway, as Don mentioned, his platelets held relatively well over the weekend, but he will need a transfusion tonight, IF there are platelets available! ENTER the platelet donations... I hope Don will elaborate on that one. Just stay tuned! He started back to work today. He had to take clothes over the Shreveport to Staci and the Jakester after he got off. He is on his way back home as I type. I just got off the phone with Staci and she said he just woke up. Again, not thinking, she asked for Ativan to help wiht the pain. Instead, he just crashed!! He has slept for the majority of the day. Well, again, he wasn't hurting if he was asleep, right? To put it like JIn said today, "We just need to get it on the internet, and let the Believers pray him through this one too." We BELIEVE GOd is so much bigger than a ventilator, tumors, shingles, muscle weakness, radiation, chemo, infections, septic shock, and anything else this stupid disease tries to throw at this family!

Let me tell you how swollen my heart was yesterday. Jake, his mom, dad, and brothers, were all in church together. Our church family gathered around the family and praised God for the miracles we had witnessed thus far, and asked for continued healing for Jake. The songs we sang were perfect for praising the LORD (Thanks, Bro. Steve). The phrase that just kept coming to my mind was "MY CUP RUNNETH OVER!" What an awesome moment in time. I look forward to many more Sundays like just like that one!

Ok, so please pray for our little Jake. There are some potential side effects that can hang around with a case of the shingles. One such side effect being nerve pain that just can't be shaken. Another side effect is really miserable itching. Then, there is the pain from just clothes or sheets touching the blisters that have now moved from the one spot on his back ot all across his back and around ot his chest. Can you even believe this?! Oh, and by the way, shingles are just a reaction of a dormant chicken pox virus in the body. It can be brought on by immunocompromised systems. And, I think Jake certainly qualifies for that. When I did a little research, it seems that it is not all that uncommon after a bone marrow transplant. One particular journal I read even said it occurs in up to 85 percent of the people who have had BMT. That seems a little hard to believe. LEt's just pray that Jake's has been caught early enough, and that the antivirals will do the job to prevent severity of the disease. I was looking back at Jake's journal that I keep for him, and would you believe that last August 24th, Jake was ending an awesome summer of NO chemo, and was about to head to St. Jude in a week or so for another lung surgery when he was admitted to LSU with the CHICKEN POX! It seems that May is the month of ventilators (and serious stuff that we never want to see again)and August is the month of chicken pox and related viral complications. Well let me just say, PRAISE THE LORD that Jake is still with us and in the fight... no matter what has put him in the hospital THIS week! PRAISE THE LORD.... Thank you, LORD, for Jake's life! Mo

Don's update:


Jake was admitted to LSU-Shreveport this morning with Shingles. They have started him on some meds to fight this infection and we hope it clears up soon. He felt really good most of the weekend. Platelets were 18K this morning so they did a decent job of holding over the weekend.

Just a quick up date on platelets & blood(I will set up some kind of drive soon)if you live in Monroe/Ruston/Shreveport area. GO DONATE!!! Call Lifeshare Blood Centers or just drop by. All types are needed but Jake really needs A-. Please go donate. Jake's life depends on it. Platelets last only 5 days from the time you donate so please give often. PLEASE donate. All types are urgently needed.

I will end this journal because I'm leaving for Shreveport and you're going to donate blood products.

Pray and Believe,
Don

Friday, August 4, 2006 11:19 PM CDT

UPdate 10:00pm Saturday night...
Did you really think I would leave you hanging without the simple seven?! No way!!
Here we go..
1. Jake's bone marrow will crank it up a notch to start producing platelets, red cells, and white cells that are really just critical! Jake is still having to take the stupid G shot every night to help keep his ANC up. He is having platelet transfusions at least twice a week! If he was making his own cells, he could just stay home and enjoy... vs. hospital visits daily (and all day long)!
2. Jake will remain infection (and fungus!) free while we await a recovery of his immune system.
3. Jake's donor marrow will be just the perfect marrow for killing any cancer cells in Jake Owen Raborn!
4. Jake's strength will improve so that while he is home, he can play with his brothers, his friends, and ride his four wheeler. It must be very confusing to a four year old to be running and playing then "go to sleep" and wake up not able to walk of even sit up?! He is very patient in waiting for someone to pick him up and take him where he needs to go, particularly considering he is only four years old. Anyone is much happier when he/she can choose when and where they want to go!
5. Jake's hearing will drastically improve when he is able to have them cleaned out. Presently, his hearing is really worse than it has been all along. He has to wear headphones in the car to hear the DVD or music well. I find he sometimes just avoids the conversations because he has to work too hard to hear or to constantly ask us to repeat what has been said.
6. LSU and the Home Health agency will be able to control Jake's condition with ease, allowing them to stay home for a long, long time. That means good labs with timely results, fully stocked blood products, and a nursing staff knowledgable of Jake's needs who are proactive in keeping him well.
7. Oh this one is easy!! Complete healing on this earth. Do your realize that there are not many stinking cells here or there that need to be wiped out with an active bone marrow! (By the way... bone marrow kicking into gear is the number one need!) After that, he is cured! Just that "simple"! I BELIEVE Jesus hears our prayers and grants us His grace. Remember we are standing on the promises of the Bible by asking for what we desire, and expecting not only that but inconceivably more than we could ever dream of!! Praise the Lord for Jake's healing! MO


Well, want to know what Jake and family have been up to for the past couple of days?! He had an appointment at LSU Thursday, went over, then had to come back home without the platelets he needed. So, Staci thought maybe they would go back the next day for the transfusion, when the platelets were there. But at last minute, Staci called me and said, "We are going on over to Shreveport tonight.... we have decided to make a little mini vacation out of it." Nothing like a platelet transfusion to turn into family fun! They went to Shreveport (about an hour and a half away) and decided at 6:00ish to head on to the hospital to get the transusion. By 10:30pm, the process had begun! Poor guys... waiting can be Looooonnng! So... that brings us to this morning when Jake had an appointment at the hospital again to get his Ambizone (anti-fungal med). This takes a couple of hours itself. The labwork came back with something weird! His platelets had actually FALLEN! No real reason why, and this has never happened before. SO, more platelets again today. When the nurse saw he would need platelets again, she said, "No, don't tell me this... Where in the world are we going to get platelets?" Apparently there is a shortage... Don is going to tell you more about how to help in that area later this weekend. WIth as many as Jake needs, he could use a little stockpile! But... there was some fun to be had on this "vacation". While they were waiting for the platelets to be processed, the family went to Bass Pro Shop. They also made it to the Boardwalk over in Shreveport. Staci said it was a little Too hot, so that didn't last long. This evening when he was home, his mom said, "Tell Mo where you stayed last night." He grinned mischievously and said, "a HOTEL!" he must have thought that to be just too cool! I don't know when the last time he has ever stayed in a hotel was! I need to say a big ol' thanks to Nurse Nicole who said she would stay as late as she had to today to ensure that Jake would NOT have to be hospitalized for the platelets. The outpatient clinic closed around 4:00pm, and Jake's platelets were ready around 3:30pm. Much longer, and he would have had to go through the hospital route... .much lenghtier!

A few thank yous...Falon Tidwell, Jake got the very thoughtful gift you sent to Memphis. He and his mom passed them out to friends. Falon made little baggies of crafts with a little note inside that said, "For a friend of Jake Raborn." Isn't that so cool?! Mandy LeBlanc sent Staci a journal book, and she said be sure and tell you thanks! Amy K., we have played Marvel hero Memory til our fingers are about to bleed. Staci said it is the perfect game becaust it packs so easily. They took it in for the marathon wait for the platelets. Thanks for always thinking of Jake. Kate Hebb, I forgot to mention that all three of the boys hit the motherload at Old Navy today. Staic used the discount you sent, and man, was that ever helpful! Thanks so much!

Let me just go on and tell you how BE-A-U-tiful Jake's new DARK eyelashes are! They are so long and now dark! It seems to really make his eyes stand out. I don't know what is up with the hair on his head, though. I see virtually no sign of it comiong back. Oh well, at least he has a really pretty head! He has a couple of scars on top of his head that he picks on incessantly. Tonight, we put on a Dash bandaid to try and dissuade him from doing that anymore. It is never going to heal if he doesn't stop picking it. Then, we had to watch him get his G shot, and it just never gets any easier! He was screaming and kicking, and mostly yelling, "Bandaid!" Hunter ran to the bathroom and came back with a DOnkey/Shrek bandaid that we thought they were out of. Jake immediately started grinning and giggling when he saw the choice. (the shot had just been completed!) SO, he is decked out in bandaid decor!

Jake and mom had a bath this evening. He is pretty much attached at her hip! They played a little Funny Foam, a new cookie monster tub toy, and some Watermelon soap. He let Staci wash his head AND his toes. It is really something to have to get permission from a 4 year old for EVERY thing! He has earned that right, though. Things are kinda getting back to normal. The big boys are in the back wrestling and hollering in their room, with the occasional fake cry and tattle tailing. Staci and Don are just about to go crazy trying to work all the stuff they had in Memphis into their already packed house! Jake is just lying around giving orders!

He decided he wanted cheese sticks from Sonic tonight, so OFF we went! By the time we got there, he had changed his mind, and no longer wanted anything. We bought them anyway... just in case!

Can I just say, "YEAH, baby" to all those Believers who were out in full force to encourage and pray for Dillon in CA. Talk about a serious shower of love and encouragement. I know their family had to be moved. Speaking from experience, there is nothing more moving than knowing people are aware of you, are loving you, and are praying for you! Thank you so much Jake Owen Believers... You are THE BEST!!

Oh, click on Team Jake and find the new pic of Jake on the day he came home. He is the bald headed toddler, in case you can't find him! I really, really hope to get pics up and rolling soon. (Chill, Dawn! They're coming!!!) Mo

I just read the guestbook... you chill, too, Linda in Texas!! I am not capable of doing this by myself, so I have to get the pics loaded, then find someone to help me put them on the puter. And... blame Staci! Jessi was willing and ready to add the pictures today. Staci took my camera with her to Shreveport, so I didn't have the disc to get that squared away! I am just kidding on the "chill" thing... I am really glad to know that people are expecting pics and looking forward to them! MO

Wednesday, August 2, 2006 9:09 PM CDT

Quick Update from Uncle Eddie:
Please visit Dillon Paul Clark's web page (Dill Pickle) and leave a guestbook entry of Prayer and encouragement. Dillon has been battling the same type of Cancer that Jake has been fighting. Dillon is having Lung surgery today.
www.caringbridge.com/ca/dillon/
Believe,
Eddie
P.S. Continue reading Aunt MO's update about our Baby Jake.

I just couldn't stand it... I was about to bust to tell everyone about Jake's first day home home. PawPaw Raborn and Crawford were here when they arrived to help clean out the garage so they could make room for the whole other home they had to unload from the UHAul. Then, Aunt Bonnie, Uncle Eddie, and Uncle Chris all helped with the unload. I wish I knew details, but I wasn't even in town...and talk about guilt! Don called me about midday yesterday and said, "Look , I am not trying to make you feel guilty, but my son is glaring at me right now, and making me call and tell you.... 'My brothers are not here. My Mo is not here. and even Daisy is not here." Talk about crushed! I asked him to tell Jake that I would be home with his brothers later that night, but that he would be "nightnight" by the time he saw us. He said, "Tell Mo to come faster." UGhhhhhhhhhhh! Staci told me as I was driving home from Baton Rouge last night that I had some serious making up to do. Speaking of Baton Rouge, Hayden and team lost the night before the finals so that made three teams with a loss. Long story short... a double header last night had us driving home at 10:30pm after a 4-3 loss. Sorry to all on our team, but we sure are glad to get to stay home this weekend! We would've gladly gone to state too, though! Thanks to the Huckabees for the team-signed bat, shirt, and program. Jake was not all that impressed until I pointed out that his brother, Hayden, had signed it... then it was da bomb! That was very thoughtful! Oh, and let me tell you about Hayden down in Gonzales in the hotel.. he was on my computer, playing a game, and in lala land, when I got off the phone with Staci and said, "Hayden, your mom and brother are coming home tomorrow." He hardly looked up, but said, "For how long?" with zero enthusiasm. I said, "Well, let's just put it this way, they are packing up everything at the Target House in a UHaul, so it is going to be to stay for a while." He looked at me, and said, "They are really moving home?" with a little more spunk this time. I said, "Yes, baby, Jake doesn't even have to go back for a check up for two weeks, and then it is only an appointment, if all continues to go well." That boy had grin so big and it just wouldn't go away! Can you even imagine 5 months without your mom? Actually, we all know it has been more like 2 years, but this last stretch was a solid one! Jake had not been home since February! And let me tell you.. he is making up for lost time!

Within 30 minutes of being home, he had ridden the dirtbike and ordered Johnny's Pizza. For a kid not eating much, he is solid! I guess it is that highly nutritive formula going in his NG tube! He looks great! Today, he had to hit the road bright and early with his dad to Shreveport. Don and Stac are having to give the stinkin G shot, but they had been putting the G into his buddies. Apparently the concentrated G into his leg is more potent, because his ANC shot up to 3400. Yessssssss! Praise the LORD! His hemoglobin (red blood cells) were a little low, so he got a transfusion today at LSU. His platelets are dropping too, but he could make it another day, and they didn't have his type. So, home health will be here tomorrow to get a blood sample for a blood count to see if it is off to Shreveport again! Today, they left at 7"30am and got back at 4:30pm.. Not so much of a "vacation", but the difference is that we are all hanging out in their den right now! Be looking for new pics tomorrow. I am going to add some of Jake's house, and he and his brothers.... He really is looking better by the day!

I had the priveledge of taking Jake dirtbike riding all around the neighborhood. As I was on that bike with him, the wind in our faces, and not a care in the world, I just thought, WHAT A BLESSING. My cup runneth over! I leaned forward and kissed that bald little head and was so thankful that teh LORD has blessed us with Jake. His life is so full, and it fills ours!

Well, it has been a tiring day, and little man is in the bed with mom. The boys are complaining because they want to order a pizza, and Pops and Nana are visiting. Don is in the kitchen trying to welcome Pops to the century with some computer tech skills (which also involve an IPOD), and I am just hanging out mooching on the deeelish supper provided by our neighbors, Mrs. Ann Davis, and Mrs. Brenda Caldwell. Oh, and thank you to Brookshire's of West Monroe for the very cool balloons with JAKE and Believe all over it. They are presently floating at the apex of the ceiling all over the house! Jake loves it!

Oh, one more thing... this evening, Jake started crawling to the couch, and pulling up onto his knees. He looks around and has everyone in the room RECOGNIZE! With very little help, he plants one foot and pulls himself on up. If I hold his little bottom, he can walk too! He is really a hard worker, and wants to get moving again. I am so proud of him!

Well, that is the day... please continue to pray that the bone marrow that we prayed about before it was ever put in his body, will get to work. Jesus sent the answer to Staci and Don that they needed to proceed with the bone marrow transplant. We, (and I mean ALL the Believers) prayed blessings on that marrow and on the donor,who gave not once but TWICE. We put our trust in the LORD that this would be Jake's cure... and now we wait for the GLORY of the LORD to be revealed through Jake's miraculous healing! I BELIEVE! MO

Tuesday, August 1, 2006 3:33 PM CDT

We are HOME-HOME In West Monroe! It is a day that Staci and I have prayed for many times over the last few months. It has been a wonderful day. We have already ridden dirtbikes and ordered Johnny's Pizza. Jake is taking a nap on the couch as I type.

We will take Jake to Shreveport on Wedenesday to the St. Jude affiliate for clinic. Jake loves Dr. Jeroudi and Mrs. Cheryl so we fell very comfortable going there.

We do have a favor to ask everyone. During these first 3 or 4 days here at home we ask that we have no visitors. This is a very tough thing to ask because we feel Jake belongs to everyone but we have so much stuff to move in and we don't want to bombard Jake with visitors that we ask this. We want to make sure that his ANC(immune system) is holding and everything is going good. We should be settled in by the weekend. Thank you for understanding.

More details later - but for now I'm going to sit in my big chair and watch my little miracle take his nap.

BELIEVE,
Don

Monday, July 31, 2006 0:38 AM CDT

I think Don had a happy birthday! He got lots of calls today and even had a birthday party. I’ll tell about that later, but first Jake’s lab results. Prayers worked because his ANC was 1000!! His platelet count was 23, and they really didn’t have to get any, but Don and Staci decided to go ahead and get them so platelets will be on the same schedule (every other day) as AmBizone. OK, tomorrow (Monday) is the big day. PRAY, PRAY, PRAY that Jake gets the go-ahead to go home. However, we must be mindful of God’s timing as Cheryl Leachman so eloquently reminded us today. God’s timing is perfect so I can only pray that this is the perfect time for Jake. Amen?

Before Don, Staci, and Jake left the medicine room, two faithful prayer warriors arrived for a visit. Jane and Bob Jones, formerly from our neck of the woods but who now live in Cedar Park, TX, had arranged with Dawn Pierce to come today to be in on Don’s birthday. Of course, they wanted to see St. Jude and got a tour from very experienced tour guides - - Don and Staci, who else…after all, they’ve been around for over 2 years, so they certainly know the place upside down. Staci and Don took this opportunity to visit some of the weekend nurses to tell them goodbye, just in case! Then Jane and Bob came by the Target House and visited for awhile. Two other St. Jude families popped in, so we had a house (or rather a room) full. Then it was off to the Pierce home for the “gathering.” Todd and Dawn (caringbridge.org/ms/shaepierce) had put together a going away/birthday party. Several families had to back out for various reasons, but besides us and the Pierces, attending were the Joneses and Bill, Dianna, and Cole Hardy (caringbridge.org/visit/wesleycolehardy). Todd grilled hamburgers and hot dogs and made Don a red velvet birthday cake and also his favorite - - banana pudding. Dawn and Jane have emailed for quite some time, but this was their first time to meet. Jane and Bob came bearing gifts for everyone…and I mean everyone. Of course Mason, Cole and Jake got gifts, but so did Dianna, Dawn, Staci, Todd, Don and I. There was a lot of thought put into the gift selection. Bob and Jane made everyone happy, especially Don with his Target gift card (iPod accessories, you know) and Todd with his Longhorn fuzzy throw and ice chest that has the Longhorn logo on the front and plays their fight song when the lid is opened. Todd wouldn’t rest easy until he finally got Jake to make the “hookem horns” and a picture made to document it. Mostly Jake would just make the L sign for loser, and you know he wasn’t prompted by his daddy!! We all had a wonderful visit. Thanks everyone. That’s the most “normal” we have felt in a long time. As Jane pointed out to me, Jake was taking in everything. He smiled a lot and was even pretty free with his hugs. Once when Mason was playing behind the couch on which Jake was sitting, Jake wanted to see what Mason was doing. I was standing next to Jake and I saw him struggling to get to his knees so he could see Mason. Being the good physical therapist’s mother that I am, I let him struggle at least a few seconds before I helped him. But I got excited because he showed interest in everything and didn’t want to just sit in Mom or Dad’s lap. This baby, excuse me…big boy, amazes me.

The word from Hayden’s groupies is that his team keeps winning and Hayden is playing well. Go Hayden and Go West Monroe South!

Thanks Anissa Parsons for your encouraging letter. And a special thanks to your daughter, Nicole for the gifts she made Jake. You remind me of Staci and Mo with your excellent beading.

I’m calling it a night because Staci has already warned me that IF, I mean WHEN, they get the word, I am to start packing. I guess this is as good a time as any to admit that Staci and I have already started packing. I didn’t want to mention it before because I was afraid I would jinx our being released. So, I’m off to bed hoping that tomorrow night (or at the latest Tuesday night) I’m sleeping in my own bed in West Monroe!

Jin Jin

Saturday, July 29, 2006 9:25 PM CDT

Well, we have some good news and some bad news. The bad news first…Jake’s ANC dropped to 700. That’s not at all what we expected. The good news…no platelets! His platelet count was 53. Woo Hoo! Since Jake didn’t get platelets or AmBizone today, the time in the medicine room was very short - - finally! We began at 12:45 and were out of there before 3:00. And do you know what that sweet baby said when we got through? He looked up at his mom and said, “Can we go do something fun?” Did your heart just melt like mine did? The safest (because of dropping counts) thing could think of was to go to the “hairport” and watch the “hairplanes.” And we did. There were lots of FedEx planes departing today so he had a good time. We even saw the FedEx plane that crashed yesterday, or rather landed hard as was later reported. It didn't look scarey or anything, but it was off the runway and tilted a little. But try explaining to a four year old who can’t hear very well why the plane looked like it did, why there were cars and people all around it (policemen, firemen, and investigators, I guess), and trying to emphasize that nobody was hurt so the poor child won’t be traumatized when he flies again. Whew! By the way, Dr. Leung has instructed Staci that she and Jake will have to fly home when they’re released from St. Jude. He also said that they would have to fly every time they come back for appointments. He doesn’t want Jake on the road for 5 hours. Many of you might not know, but St. Jude pays for flights for patients (and a parent) who have to fly. Remember that the next time you donate to St. Jude or support any fundraiser for the hospital, like the December marathon. How many patients could afford to fly? And thank God for Angel Flights. Those pilots will surely have many jewels in their crowns. Staci and Jake will most likely use Angel Flight when possible. I don’t know why I’m on my soapbox tonight, but I feel the need to remind you that it takes over a million dollars a day to operate St. Jude. If patients have insurance, then the company is billed. But if patients have no insurance, no one is turned away. Everybody gets the same quality of care. And the doctors are world renowned. That’s pretty amazing.

I will attempt a Simple Seven for prayer tomorrow with your Life Group, Sunday School class, etc. :
1. ANC to rise above 1000 and stay there;
2. Platelets to rise above 80 and stay there;
3. Bone marrow to begin making blood and platelets;
4. Bone marrow to rid Jake of any and all cancer cells;
5. Jake to get stronger every day and to begin walking without pain;
6. Jake’s hearing will improve when his ears are flushed out and there will be no further damage;
7. Jake to be cancer free and completely healed here on earth.

Don’t forget to check out Team Jake (see link above) and keep up with their progress in reaching their goal of raising $50,000 for St. Jude.

Thanks again for loving my little man and for being such wonderful prayer warriors.

Jin Jin

Friday, July 28, 2006 11:36 PM CDT

Some good things happened today that gets us closer to going home. Jake’s ANC was 900 and it has to get to 1000. It’s reasonable to think that will happen soon, maybe Saturday even. The Ambizone (fungus medicine) is now cut back to every other day. The big thing still remains the bone marrow to kick in. His platelet number dropped down to 11 and that’s not good. However, they explained that the bag he got yesterday was small and it must not have been good platelets. The docs are now reducing the volume of fluid that accompanies the platelets in hopes of getting a more concentrated amount in him. That is a very big prayer request.

Once again it was a long day in the hospital/medicine room. Afterwards, we went to Target where he scored a couple of games. He and I played 2 rounds of Cariboo before he put his head on the pillow and went to sleep on the couch. That must have been around 7:30 and Don took him to his bed around 9:00. He’s still snoozing away, so I know he must be exhausted.

On the way to Target, I kept rubbing Jake’s head. It is so soft. That reminded me of the day we left the hospital. Nurse Julie from ICU came up to 4th floor to tell us goodbye. While hugging on Jake, she rubbed his head and commented on how soft it was. She took pride (as well she should) in its softness because she kept it coated in some kind of white cream the whole time he was on the vent. Radiation had done a number on his head, face, and ears. This is just another example of how good the St. Jude nurses are. Every time we would go to a different floor, we would think those were the best nurses. We finally decided it doesn’t matter which floor we were on, all the nurses were wonderful. They care so much for each patient. They are skilled and are very good at their jobs. Thank you St. Jude nurses, nurse assistants, and all the staff who take care of the kids and their rooms. We love you all.

I’ll sign off now and wish for all of you a very good weekend. Play with your kids and grandkids. Kiss and love all over them.

Jin Jin

Thursday, July 27, 2006 11:43 PM CDT

Jake had another long day at St. Jude, mostly in the medicine room. It seemed to take its toll on him as he was very tired late afternoon and wasn’t very anxious to participate in anything - - like the Target sponsored July birthday party with Domino’s pizza. When he got back upstairs from the party, he went right to sleep. He did, however, accomplish one special thing today. After returning to TH from St. Jude, he went with me all the way down the hall to the trash disposal room on his little motorized car. I fixed his small plastic bag of trash and let it hang from his flag on the car. He drove right into the room, pushed the big red button that releases the garbage chute, put his bag of trash down the chute, and headed right back to the room. I got the biggest thrill out of this small feat.

Jake’s labs were good today except for his platelets. He had to get more, but his ANC was 700, so that’s a plus. He continues getting G until his ANC reaches 1000. He saw an audiologist because his hearing has become worse. You may remember that one of his chemos (cysplatin - - sp?) affected his hearing, but up to now only high pitched sounds seemed to be the only thing with which he had trouble. But lately, it has been obvious his hearing has worsened because he won’t look at whoever is talking to him or he says, “Huh?” a lot. Sometimes he simply tells us he can’t hear us. The audiologist tried on his hearing aids he’s had for quite some time. They still fit, but she said don’t use them because she determined his right ear was completely plugged up with ear wax (just like Staci had predicted). She (the audiologist) thinks there may be some fluid behind his ears, also. The only problem is that he can’t see an ENT to get his ears cleaned out until his platelets reach 80. They’ve been running around 17-40, and that’s with him getting platelets at least every other day. Low platelets are the reason Staci can’t clip his fingernails and toenails either. She has clipped them a little bit, but they’re still too long. Just a little side information there. Anyway, we were told not to get our hopes up that ear wax and/or fluid are the only reasons for his hearing problems. It would be nice for it to be that simple, but it could be some other damage. So there’s another prayer request along with praying that his bone marrow kicks in so he can get those platelets up. Working bone marrow is the major issue to be resolved before we can go home.

Guess what? Don and Staci actually left the TH for about 30 minutes BY THEMSELVES! Jake was still asleep, and of course, I got the drill like I’ve never kept a kid before. But all turned it out just fine. Hopefully, they can get more time to themselves as we go along. Jake does like having one of his parents around all the time, so ol’ Jin is going to have to step it up for him to be satisfied being with just me. I can be pretty crazy and entertaining when I need to be! I even played with the Floam (thanks Angel Penni!) which has a crazy consistency, but Jake loved giving me orders what to make next.

Everyone’s asleep around here but me, so I guess I’ll shut it down to rest up for another day. I have to admit though that I’ve been slacking and not going with Don and Staci when they’ve been going to the hospital every day. But Staci took today off. She stayed at the TH and started cleaning out some stuff. I hope Don takes a day off soon, also. You all comment about how strong they are, etc., but I’m witness to the fact it is truly a whole lot of work taking care of Jake. They’re up all during the night preparing feeds and meds and then all during the day doing the same thing. Even when Jake’s in the medicine room receiving meds, Don and Staci still have to give him his meds that are given orally, which now are given through the NG tube. It’s 24/7 and nonstop. Pray for renewed strength for them.

If this update seems sort of disconnected, it’s due to the fact that it probably is. It's been typed on and off for over 5 hours. Once again we thank you for hanging in there with us and helping us get through this journey that is the Miracle of Jake. We love you all.

Jin Jin

Thursday, July 27, 2006 0:46 AM CDT

The days just keep getting better. I’ll pick up where Staci left off (Tuesday afternoon) . After we finally left the medicine room, Jake wanted to eat “cheese” at Macaroni Grill. Soooo, we went all the way to Germantown to eat at Macaroni Grill. Once there, he wanted “cheese” (simply a dish of several kinds of cheeses baked together), salad, cheese sticks, bread…but what did he eat? NOTHING! When we left there, we had to drive next door to get him Chickalay (Chick-Fil-A for you newbies). And what did he eat from there? NOTHING! But…from past experience we know that the first sign of Jake eating again is for him to show interest in food. I think that’s where he is - - showing interest. Perhaps he will actually begin eating sooner than later because the rate of his feeds has been reduced greatly. He was getting 50 mL/hr of Vivonex but that has been reduced to 20 mL/hr. In case you medical people out there were wondering, I misspelled Vivonex in my last update. I have no idea what Visonex is, so in case it’s some kind of poison, you now know we’re doing no harm. Anyway, hopefully with a reduced amount, he will want to eat. And another benefit is that he hasn’t thrown up since the reduction. Hallelujah! He is tolerating this amount much better. While on our outing, Jake showed us his humor several times and blessed us again and again with his wonderful laugh. When we got back to the Target House, he wanted to ride on his new motorized car. It’s much smaller than his 4-wheeler he has back home and it is low to the ground. He fit in it just perfectly, and he and his dad went all the way over to TH1 to check the mail. Of course, he wanted to wave back up to the 4th floor when he got down there. He was so proud of himself. I wanted him to try pedaling his tricycle again, but since he tires out pretty quickly, we’ll put that off until another day. Besides, he was waiting for his buddy Mason Pierce to come see him. Even though he can’t (yet) get down in the floor and play, he still likes to be in the middle of the action. Mason brought with him his mom and dad, Dawn and Todd, who had a good visit with Don and Staci.

Now to get back to the mail…Thanks Angel Penni. You rock. Jake always recognizes your packages and once again he loved your gifts - - a cowboy t-shirt and a baseball cap. He immediately put on the cap and said, “Look, Mom!“ We (the grown-ups) loved his big smile and animation. Thank you Mr. and Mrs. Johnson for the many cards and the cash. Once again, Jake’s response was a great big smile. OK Believers, listen up. Mrs. Mary is having surgery and needs our prayers. She has been with us from the beginning and is a very special and devoted follower. Just say an extra prayer for her. My sister (the other Aunt Bonnie) and her Sunday School class from the First Baptist Church of Olla, LA, sent a very generous love offering. And yes, the big smile was there again. Ms. Libby, your card and cash brought the same response. I wish you all could see him. He has that impish grin and looks over to his mom and dad with a little head nod as if to say, “When are we leaving for the Toystoria?”

Want to see and read something special? Log on to stjude.org and read the article about the NASCAR driver. Yep, it’s about our sweet boy! When J.J. Yeley visited Jake, the article was in the local paper but they didn’t include a picture of Jake. Other kids’ pictures were in the article, but we must remember Jake was on the vent at the time.

Today (Wednesday) has been pretty uneventful. That is if you call Christmas in July uneventful. Jake got to see Santa Clause at the Jude today and got 2 presents. He scored a helicopter and an ambulance and police car set. He was pumped! He needed something special today since he left this morning at 8:00 and didn’t get back until after 5:00. So when Staci told you that a lot of things have to happen before he can go home, that’s quite an understatement. So, Prayer Warriors, we need lots and lots of prayers mainly that his bone marrow will start working. He needs to be producing his own blood and platelets. That seems to be the biggie right now.

We need to thank Ms Angie Rangel for the delicious supper tonight. We dug in like we hadn’t eaten in a week. Jenni Trewin from Canal Fulton, OH, Staci wanted you to know that she did receive your book and has enjoyed it very much. She was sorry she missed you because she wanted to meet you and let you know that she had already read Joel Osteen’s book and was wanting to know more about his mother. So it was the perfect gift. And Becky Marshall, you should know that Staci is truly on the edge of her seat waiting for the premiere of That’s so suite life of Hannah Montana. Watching it in West Monroe will just be the icing on the cake.

Mo better watch out - -this update is rather lengthy, so I’m signing off…but not before asking everyone to keep praying. Thanks for hanging in there with us.

Jin Jin

Tuesday, July 25, 2006 2:06 PM CDT

okay okay, we hear you. We are in the medicine room as I type. Jake is sleeping and Don is listening to his new I-Pod. We got him this for his birthday, which by the way is Sunday. We really hope to make this a better day for Don this year. If you all recall Last year Don's mother passed away on his birthday. I can hardly believe Nana has been gone a year. Boy do we miss her. She was such a special lady. The most unselfish, kindhearted, woman I knew. She would give the shirt off her back if she thought it would help someone. Now we have the most awesome angel watching over us. There's no better feeling in the world.
It will be another long day, but who's complaning. We do get to walk out the door when we are finished. Jake is having to get platlets everyday and his ANC has remained at 500 despite the G he is getting.The doctor told us today he is not sure why Jake's counts aren't holding. We are tapering down on one med in hopes this will help his counts to rise. PRAY PRAY PRAY! Because the doc said he is shooting for mon. YES this mon. for us to go home home. Can you even believe we are talking about us going home. WOW!!!!! Of course there are things that have to happen for this trip to occur. So we are not counting our chickens just yet.By the way if you can stand some more exciting news, we got another AFP yesterday DRUMROLL PLEASE........2550. It continues to fall. Thank you Jesus.

Yesterday our friends Amy and Allen Smith were in the med room with us all day too. So when we all finished, we headed to the movies. The boys defintely deserved a break. It turned out to be ideal for us, Monday nights, not a busy night at the cinema. Allen picked the movie. He had been dying to see Monster House. Amy and I asked the ticket lady if this was an appropriate movie for the boys. She looked at us like we were crazy and said "It's a cartoon". Well needless to say after about 30 mins., Allen was watching the movie through his blanket. It was cute, but it was a little scarey. Jake seemed to enjoy it although he fell asleep before it ended. We drove Allen and Amy to the airport this morning and look forward to our next encounter(hopefully in West Monroe).

Keep the prayers coming and I promise to keep you all better informed. We love you all.
Believe, Staci

Monday, July 24, 2006 1:14 AM CDT

WHAT AN AWESOME DAY! Sorry for the late update, but Don, Staci, and I have otherwise been busy with “the boss” down in the game room where we played 2 games of Candy Land, 2 games of Sorry, 2 games of Duck, Duck, Goose, 1 game of Chutes and Ladders, several games of Whack the Mole, and 2 games of Candy Land Bingo. As we were all yawning, he kept asking for more games and none of us could deny this baby the joy of being just like a normal kid and playing games. So we kept playing. We realize that someday he has to learn how to loose and not always win every game. But hey, there’s plenty of time for that. I guess there’s plenty of time to also “unteach” him not to make the “L” sign on his forehead and call everybody else a loser. (We’ve already started praying for patient and tolerant pre-K and Kindergarten teachers.) But he had a ball and he would get so tickled, he would do those wonderful deep belly laughs. Music to our ears. Don would do anything to make him laugh, so when he slicked back his hair, Jake called him Jimmy Neutron.

Like yesterday, he had to get meds in the medicine room, but this time, he only stayed a little over 4 hours. While the 3 of them went to St. Jude, I stayed at the Target House to do some much needed reorganizing and tons of laundry. It’s amazing how much can be accumulated during a 104 day (103? 105? I lost count…) hospital stay! I also stayed at the TH in order to be here when Karen VanSickle and her husband, Dick, brought another scrumptious meal. When this lady cooks, there’s enough for days. Thank you Karen and Dick - - everything was VERY delicious.

Now about our day. When Jake returned to the TH, he was ready to go to the zoo. It was a great day for an outing because it wasn’t too awfully hot (only about 88 degrees) . We saw lots of his favorite animals, rode the tram and train, and just generally strolled around. It would seem almost normal except for the part where we had to stop to mix his meds to go in his NG tube. When we drove back to the TH, he didn’t even want to go in, but instead he wanted to go straight to the playground. Don put him on one of the rides that he has to push with his feet (like he got at the Toystoria yesterday), but he just sat there and didn’t even try to move it. Then Don placed him on a tricycle like the one he has and use to ride on to help me take out the trash. And lo and behold…drum roll please…he pedaled that trike!!! You would have thought he had just beat Lance Armstrong the way Don, Staci, and I were whooping it up. Now I can’t wait until he actually can go with me all the way down the hall to the trash chute.

More good news is that Jake hasn’t thrown up very much today. And that can be credited to Dr. Don and Dr. Staci who decided to take him off his feeds. They did, however, consult with the doctor in the medicine room and were given the OK since they were meeting with the nutritionist on Monday. Since being off the Vivonex, he threw up only once and that was after we came back upstairs after the game marathon. We decided it may have happened because he smelled some food that might have made him nauseated. There is no comparison to the way he felt today to how miserable he felt yesterday. So hopefully, the feeding issue can be resolved and the vomiting can stop. It surely makes a difference in how his day goes.

OK, Shirley Matthews, you asked for me and you got me. At least I can hang with Melanie when it comes to the length of the updates!

Keep praying.
Jin Jin

Saturday, July 22, 2006 10:02 PM CDT

I will just pick up where I left off last night...

When Staci and Don hit the Target House, they had lots of packages and notes/newletters for months since they have been in patient. One neat surprise is that the Target Corporation held an art contest back before Jake went inpatient. He was one of four winners who will be highlighted on the Target Christmas cards this winter... so keep your eyes open... Jake's snowman will be one of the designs on their Christmas cards. Isn't that cool?

Here is a little sampling of thank you's that are in order:
First, Janet from MI, thanks for the octopus beanie baby. We have been playing Go Fish, and one of his recognizable animals is an octopus, so he was pretty excited about the connection he made. The McCarty clan sent an huge Superman doll which Staci says is as tall as Jake. Thanks to Mr. Mickey, Miss Carol, Michelle and Addison! Christy in Olla, I don't think he has ever seen Bedknobs and Broomsticks, so good choice!! Staci said she was glad she got to meet Tina Sommer from Southhaven, and I think she said she met her in the elevator first. I may have that story mixed up. If so, sorry. Kim Cook, obviously a fellow crafter, sent a handmade Believe card and Christmas ornament. And I just don't know if I ever sent a shout out to Luke Sanders for the autographed football and the picture. Jake thought the LSU ball was so cool!

I want to make sure that everyone knows about a big group of supporters who have a little tribute of sorts on their site for Jake. Go visit and say hello from a Jake Believer at www.streetrodder.com In fact, the Coopers, from this site,and from Russellville, AR, sent a big box of goodies. A couple of pair of Superman PJ's, McQueen cap, 3 hot rod cars, and a book... plus more! Thanks for sending such a fun package to Jake!!

I want to let everyone know that our good mayor, Dave Norris, and his quartet will be singing some good ol' gospel music at our church, Cedar Crest Baptist Church tomorrow night at 6:00PM. If you want to hear some great music, come on by! We would love to have a big crowd!

Ok, for Jake's day... He got up bright and early at 6:00am-ish. He decided that on his first day of freedom, he would like to go to the airport to watch the "hairplanes". As it turned out, Jake needed to swing by the medicine room, which turned into a seven hours stay! Can you even believe that?! He needed a bolus of fluid because his kidney levels were too high, and they suspected dehydration because of the vomiting yesterday. He has thrown up some today too. He also needed platelets while in the medicine room. He also got an antibiotic and ambizone for the fungus that we never want to see again. By the time they got away, apparently all the planes had flown, because JinJin said they only saw one! That stinks! They also went to Toystoria and got a couple of new riding toys (one manual and one automatic) to help with his balance training and strengthening. He threw up in the car all over his clothes, so there was another quick stop at Old Navy for a new outfit. He is feeling a ltitle yucky in general.

I suppose we need a simple seven for tomorrow morning:
1. That the bone marrow starts working to kill ANY remaining cancer cells.
2. That the bone marrow starts to produce the appropriate amount of platelets, red blood cells, and white cells for his immunity.
3. That his lungs remain healthy, free of infeciton or fungus, and definitey free of cancer!
4. That there is a simple answer for the vomiting, and the docs can easily find the reason for it.
5. That Jake's appetite picks up so he can do away with the NG tube. (of course, not taking all those meds by mouth has been pretty nice.)
6. That Jake's physical strength improves so that while he DOES have this little hiatus from the hospital, he can actually enjoy it.. playing, running, riding, etc....
7. That Jake is healed from cancer. For the first time in quite a while, there are no visible tumors. Therefore, we are totally relying on the bone marrow to get to work to clean out any cells that may be present and may want to turn into a tumor. However, the marrow is still in a suppression phase. When the meds are discontinued to let "the big dog run", Jake's vital organs will need protection from GVHD. Of course none of this will be a concern if God chooses to touch him right now and HEAL him! We BELIEVE this can be! We pray that this is the will of God.

OK, well, don't forget about the singin' tomorrow night. We would love to have you. Staci, Don, and Jin... we cannot wait to have ya'll home!! MO

Saturday, July 22, 2006 0:23 AM CDT

I can hardly believe it. I just lost my really long and detailed update, and my blood pressure is up! But, because it is such a very special day, I am going to try it again.

The official residence is now the Target House. Jin said they tried to keep the possibility of the move on the downlow until it was a definite. When he found out, he was so excited. Staci said, "You have to get this blood, Jake." He said, "It's too LONGGGGG!" Then came the move. Staci said she has picture documentation of every step of it, so we will try to post as soon as possible. They have pics of his leaving his room, leaving the hospital, and riding in Dad's truck.

Once back to the Target House, Staci went to Kroger to restock the cupboards. When she got back, Jin unloaded the groceries, and said she had a couple of small trashbags as well as the big one. She was preparing to go down to the trash chute and dump when Jake said, "I want to go." He obviously remembers riding his little trike down the hall with the small bags hanging on the handlebars, because he saw his trike and initially thought he would like to ride it. It didn't take long for him to realize he just couldn't do that anymore. He opted to let dad carry him, so they disconnected all the stupid lines, and went for a joy walk to the trash chute. Don't you know it is confusing to Jake to have a nice long ICU sleep, and wake up to not being able to walk? This isn't the first time either. A couple of years ago, he lost the ability for almost a solid year. The only way he could get around was in his little Flintstone style car. We took that thing to the grocery store, the mall, and the hospital. It seemed to really give him some strength. Staci plans to go buy one tomorrow, so maybe it will work again this time too.

Do you know the first thing he said in when he got outside? He said, "I like the wind." Isn't that something? We just don't even think about that being a blessing. It was likely record highs in temp, and Jake was still appreciating the wind. Speaking of wind, he had a balloon when he left the hospital. he let it go at the Target House and said it was for Stanton.

There are lots of thank yous that are in order, but I am going to save them for tomorrow. For today, let's just praise the LORD for being out of the hospital!! Staci said the double bed is like "heaven". Jake is loving his x-box right there in bed next to mom. Staci says she can't believe that she is actually holding a remote control that operates both the channels AND the volume! Simple pleasures!

Jake has thrown up many times this evening. Don thinks it may be due to too much going into a small stomach. They plan to ask the docs about this tomorrow. Jake is losing his meds when he throws up like that, and he really can't afford to lose all that with them being so critical for him. JIn went back up to St. Jude to get some replacements for the many meds lost. Hopefully this will be resolved. But you know what... I don't think Jake would complain at all... he would DEFINITELY choose to be out of the hospital and not feeling well to being in it and cruising right along. I mean, have you thought about the fact that four months is almost half a year?! That is really unfathomable!

I remember when Jake was in ICU on the vent, I had to run an errand for Staci or Don. I took Staci's car. I looked in the backseat and saw an empty little carseat. I remember having a real pain in the pit of my stomach because the docs were telling us that he would not ever get off the vent. I thought, Please, God, heal him. Let him sit in that seat again. So, personally, I am moved that Jake is back in the saddle again. He LOVEs to be on the go! Hallelujah.

We have had so much resopnse to becoming a buddy for our runner/walkers. Thanks so much for your support. Having these personal connections between Believers all over the country will be such a neat experience. Just imagine all the people who will be running in Jake's honor at the race. TEAM JAKE is now up to 50.

As Aunt Bonnie said, Paron Baptist Church, so graciously honored Jake with the love offering from their VBS. Thank you all so much for your generosity.

Well, more to come tomorrow. In case anyone missed Don's update earlier, Jake's AFP dropped another 1400 since Monday. It was over 9300 before the lung RFA, and now it is 3800 in just one week. Thank you, Jesus, for the huge blessings of today. MO

Thursday, July 20, 2006 9:12 PM CDT

Update 12:55am Friday Morning

Just letting you know that Jake's AFP is now 3800. For some reason they run one on Thursday and it had dropped another 1400 since Monday which is awesome.

Keep praying.

BELIEVE,
Don


Update: 11:45pm (and everyone wonders why I can't get up early in the morning!!) We are up to 23 cheerleaders! Thanks guys! We need about double that. keep em coming. And by the way... go Eddie E.! I have been reading your TEAM JAKE blog, and you are doing great!! Mo


PSYCHE!!!!!!

Oops, Mo is NOT in the know! I am going to blame Jin. She told me that they were moving, but it didn't happen! We are still hoping for it tomorrow. Staci and Don had to learn to give Jake his feeds via a pump into his NG tube. I guess if there is a positive of the tube, it is that he doesn't have to suffer through taking oral meds, because they can just bypass his mouth, and send it straight into his belly through the tube. They also had to learn about oxygen tanks. They are getting so smart!

Jake started getting the G shot, also through his buddies, (thank the LORD), so his ANC is up a little to 1100. At least that gives him a little security as far as infection is concerned. He is not really on a steroid now, Don tells me, but on a med with a long name that starts with a T that is specifically for suppressing bone marrow. Don thinks he may be getting close to having it decreased. Heads up... already praying for mild and NOT harmful GVHD. But LOTS of GVT (graft vs. TUMOR!!)

I have 13 encouragers, and need about 37 more! I am hoping to have a cheerleader specific to every runner. Email me... mgroves@jam.rr.com It won't be hard... just a few emails and maybe the occasional card.

ALrighty then, I will let you know about the move as soon as I know.

MO

Wednesday, July 19, 2006 11:43 PM CDT

Well, guess who is moving to the Target House tomorrow! Yep.. Jake Owen Raborn! Staci has already packed the bags. Jake needed a little oxygen last night, but only when he was sleeping, because he tends to get a little too chilled,and his sats start to fall. That is actual typical of all of us. He was off the oxygen canula again all day today, so asta la vista, baby. His ANC (immunity) was 800, so it is really falling. We DO NOT want this number low. 500 is considered neutropenic, and a mask is to be worn. We need that bone marrow to work and start making him a little immunity! Miss Shirley, I don't really know WHY he is still on steroids. I know it is a delicate balance between letting the marrow go hog wild and keeping the GVH at bay. He also had some issues related to his stint on the vent that kept him on steroids. He was on several, and now I think it is just one. Don, any enlightenment on WHY he is still on the steroids?

Jake got his first bath in three months last night. Mom said he really seemed to enjoy it! It took several of them. He still has buddies and an IV pole constantly in tow. Also, he can't really sit up safely by himself, so his dad had to help in that department. Don't you know he enjoyed that bath?! Lots more of "normalcy" to come with his move tomorrow.

Jin said he was quite active today. He played Memory, Go Fish, colors, painting, and even went outside for a wagon ride. I am so glad to be able to report that he is actually WANTING to do more things.

Hayden won his ballgame tonight, so we are off to Gonzales in about a week. He played a mean third base. Didn't he Scott Murry, who always reads the site, but never writes! Or how bout you, Cindy, who I saw at lunch today and also admitted to be a lurker!!

I had several people email me about being a cheerleader, and I have paired several up already. If you want to be a part of TEAM JAKE without actually having to train or run, I have a fun project for you. All you have to do is encourage! Email me at mgroves@jam.rr.com Come on, folks.... it'll be fun!! MO

Tuesday, July 18, 2006 2:40 PM CDT

Greetings from West Monroe, Louisiana. Yep, Hunter, Keelan, Todd, and I all had to hit the road Sunday evening, because believe it or not, I DO have a job! When we left town, Jake was feeling kinda puny. He was lying around a good bit on Sunday, and not really wanting to play. We tried to take his oxygen off on Saturday, but his sats were dropping, so it had to stay on.

Jin is up there still with Staci and Don. She said Staci got a little crazy last night and said, "I HAVE GOT TO GET OUT OF THIS ROOM." So crazy as she is... she went down to the cafeteria! That is just the way she rolls! A true rebel! It seems Jake has also been in one of his little moods. He will whine for his mom to come and lie down with him, then when she goes over there, he rolls over into her spot. She turns to walk away, and he screams, "Pleeeeeeeeease, mom, pleeeeeeeeease!" She will say, "Ok, Jake, if youi want me to lie down then you have to scoot over" She starts back that way, and he flops his arm over into her spot again. She walks away, and then come the alligator tears! HE TOO NEEDS TO GET OUT OF THAT HOSPITAL. And, it can happen, IF... he can get off the oxygen and his bone marrow shows that it is going to take over and him NOT need all these transfusions. The bone marrow also MUST kick in to keep him protected via immunity and KILL all those cancer cells that didn't get fried last Friday. So, Prayer warriors, pray for bone marrow to do its thing and no significant/harmful GVHD in the process.

So our peeps can understand the whole half life and AFP deal, let me explain. An AFP is just a blood protein that can give the docs a general idea of whether the cancer is on the way up or down. AFP stands for alpha feta protein. Normal is 10 or lower. Jake's was 747,000 when this began. For the last three weeks, it has been climbing about 2000 points per week. On 06/26, it was 5300; 07/03, it was 7500,; 07/10, it was 9300. By Friday of last week (07/14), one could assume with the way it was climbing that it was well over 10,000. So... as hepatoblastoma starts to die, the AFP should start to fall. AFP has a "half life" of 7 days. So, as of today, (5 days after the procedure), we would expect an AFP of 5000ish. And lo and behold, Jake is ahead of schedule! Praise the LORD for that , and please, God, let this be the time it goes to normal. We KNOW that the bone marrow translant is the saving grace for ridding him of any residual cancer cells. But, again, we need to pray against any painful (such as before in his belly)side effects of the treatment. Jake remains on steroids at present so they haven't fully let "the big dog run"!

A note to Diane, Beverly, and Becky about the cool package Jake got this weekend. We sat together and looked at all the "big truck" pamphlets. You DO know what this boy likes! We pretended to make the "big trucks" honk, and boy, do I ever look forward to seeing him in his carseat in the back of mom's vehicle, cruising down that interstate. They are really kind of "on the go" folks anyway, so he needs to be buckled in and holding on! Also, to you three, I know one of you is a scrapbooker based on the really cool bucket you sent. We had fun playing with all the goodies in it too. I need to know where you got the cool chocolates with Jake's pics on them. PLease email and give me the info. mgroves@jam.rr.com Thanks...Sharon Stanley-Price was in town with her son, Lane, this weekend, and came by to visit ol' Jakipoo. She got to sit down to a mean game of Go Fish with him and learn what it means to play by "Jake's rules!" I just called Staci and she gave me a report that Angel Holly and JakeDog sent a marshmallow gun today, and man-oh-man, do I ever wish I was there to play with that one?! By the way, Holly, my mom has RAVED over the lime cake that you sent a couple of weeks ago...annnddd... we polished off the coffee cake this weekend. Girl, you have sho nuf got a handle on our family!

Ok, just called Don, and Jake is napping WITHOUT his nasal canula for oxygen, and is keeping his sats about 96 percent. Rock On!

Well, there you go.. an official "long" update. Who was it that was asking for a "long" one? And, be looking for new pics. Jake looks soooooooo much better, and I have recent pics to prove it!

OK, we have a buddy who is looking down the scope at a ventilator. YUCKIPOO! Please offer him support at www.caringbridge.org/visit/marcuspinsanor His mom is by herself during all this, and I just cannot imagine all she has to do. Marcus is a preteen, and he just needs some encouragement. His poor ol' lungs are going in the opposite way, and we want him to make a turnaround.

HEy, have ya'll checked on our Team Jake members? 45 members and counting. There is a project in the works to pair a Believer with a TEAM JAKE runner to provide encouragement via email and maybe the occasional call. Not all of us are cut out for marathons! Some are gifted and called to encourage! That is me! ANd, I know some of you too, so if you want to be a cheerleader, and be paired with someone who is new to doing these races, and who has committed to do this for Jake, email me. See my email address above. I have some fun ideas for getting them going! Each TEAMJAKE member is also trying to raise 500 bucks each to be considered a St. Jude Hero. They will get some special perks by qualifying for this, and of course, all the proceeds go straight to St. Jude. If you want, you can help your buddy by helping solicit friends and family to help them meet their goal more quickly. As you can see, 10 bucks is a mighty fine donation, as evidenced by the many who have contributed this amount. And, if you want to check on a specific person, check out Eddie Enlow... he is blogging his progress on the TEAMJAKE site. Another hero, Jason Barnard, has recently shaved his head in exchange for his youth group raising his money in one day! Now THAT is commitment. He is just beginning a training program, but has committed to do 13.1 miles! Goooooo, Jason! If you can't find all this stuff on the TEAMJAKE site, let me know and we will try to request that the site be made more user friendly. I think it may just be me! I thought I was just going to mention this, but it took off and my fingers wouldn't stop typing. I will probably revisit this soon.... for now, email me and I will send out more info if interested. Holly, you would make a GREAT partner to someone. JakeDog is very inspiring!
Love to all.. MO

Saturday, July 15, 2006 8:26 PM CDT

MONDAY Update 1:00PM
Jake's AFP(tumor marker)is 5265 which is down from 9300 last Monday. This is a GREAT number as the tumor marker should only fall by half every 7-10 days. It is only the 4th day and it is close to 50 percent drop. Next Monday's AFP should be even better. Jake is doing good today. He has been awake most of the day and active.

Thanks for the prayers. Keep them coming. We still have a long way to go.

BELIEVE,
Don




Wowwee! Trina, I am sooo drawn in... I am getting sleeeepy, so sleeeepy! I am in a hypnotic trance! The chocolate and desserts worked!

Well, if you want to know exactly what is going on right now, Jake just said, "Dad, come feel my blankie." Then he looks at Jin and says, "Hey, how did you get it warm?" He suddenly realizes that it is his own quiteld blanket and not a hospital blanket, so how in the world is it that it is warm? It couldn't have come from the hospital's warmer! Well, good ol' Jin (and Hunter.. he is trying to earn money for a new paintball gun!) just got finished with the laundry, so it is still warm from the dryer. Jake has a new blow up sword from the Happy Meal that I went to get (that you KNOW he didn't eat!), and he is waving it around in the air. He is in the bed with his Uncle Todd. Staci is finally taking a little break from holding Jake for a WHILE in the recliner. At some point, arms start to go numb!

Do you know Jake has not had to hit the pain pump since midnight last night?! That is so awesome. He is not complaining of pain at all. He has a pretty significant burn right in the crease of his right groin which has Dr. Hoffer a little concerned. He said the burn is from the inside out, since it is a result of the internal action of the procedure and is at the site of the ground pad. He said the last kid who suffered a burn turned out to have a third degree burn when the blister finally popped. He went on to say if this tunrs out to be the case, he could need a skin graft. Then, of course, there is ALWAYS the risk of infection with an open wound when the ANC is low. HIs is not low right now, because the docs gave him a G shot before the procedure to try and boost him for the purpose of preventing infection. We aren't going to worry about all that right now... we are BELIEVING that Jake is NOT going to have a burn that is significant, and that is that!

He is breathing at about 97-98 percent saturation. He is wearing his little nasal canula and has his O2 at a minimal 1/2 liter. We tried to take it off today, but that didn't work out so well. He just couldn't keep his sats up.. yet! He will!

Jake and Keelan were just engaging in a dual with blow up swords. Keelan started gaining ground, and Jake announced, "People are trying to sleep." That is classic!

Dr. Leung has made a little mention of the possiblity of Jake going home home when he gets off the oxygen. He sees no reason that he will need to stay around, but just come in every couple of weeks for scans and such. I think he sees how much good it does Jake to be around his family. One day when they were considering moving Jake because they needed a free room up here on the bone marrow floor, Dr. Leung came in and saw jake sitting up and playing for the first time in a long, long time. He asked Staci, "What is it that makes him better?" Staci said, "Being surrounded by his family. He likes the action!" So, he seems to understand this, and if he only knew how much more it would be healing for Jake to be at HIS HOUSE! Not to mention, Dad would be back in town, so he could work. We could watch Hayden play ball, and did ya'll know that they live on the same street as me and Todd?! So, we will get to see them all every night!! And.... seeing as how he needs lots of therapy, I will get to see him EVERY day!! Come on baby, get off that oxygen!

Jake is wanting to eat a little, and takes a few bites. He asked for chicken nuggets, a hamburger, macaroni and cheese, and cereal. He also wanted to "look at" a piece of ham! WHatever! and yesssss.....He got it!

Katy, Staci said to send those Old Navy coupons on! Three boys.. are you kidding? Of courses, she needs all the discounts she can get. Thanks for the offer! Oh,this is probably a good place to say that Jin would appreciate the discount too! We are picking on her about her constantly saying, "You know, I am now on a fixed income." Today is her OFFICIAL retirement day. and we can commemorate this day with a classic from Tom Petty..."and I'm FREEEEEEEEEE!

And in light of the miracle yesterday, here are this week's "Simple Seven"!!
1. Praise the Lord for not being on a vent!
2. Praise the Lord that he got to come back to his big, comfortable room on the 4th floor and not ICU!
3. Praise the Lord that Jake is starting to show an interest in eating, and even taking a few bites!
4. Praise the Lord that Don has a job and it allows him to stay here during the critical times!
5. Praise the Lord that Jake is having no pain!
6. Praise the Lord that Jake has such a strong will to live, and that he can show us his spirit so shortly after being on life support and only a day after a major procedure!
7. Praise the Lord that Jake is here! Praise the Lord for strong fatih that brings such HOPE. Praise the Lord for our family! Praise the Lord for the constant support we have all been able to share due to preordained circumstances that left us free to help and be together. and Praise the LORD for the miracle that we KNOW is unfolding before our eyes. Everytime a door seems closed, we see a glimmer of HOPE and then it is opened wide! Praise the Lord! Praise the Lord! Praise the Lord!

I needed more than seven tonight. In fact, I needed probably a hundred! God has been so good to our family, and our lives have been so blessed by not only Jake's but by yours also! Please go to church tomorrow. Offer your prayers of thanksgiving and praise. The LORD is able to supply abundantly more than we can even think to ask for. "No eye has seen, no ear has heard, no mind can conceive what God has prepared for those who love Him."
And we DO love you, Lord.

MO

Friday night... check it out.

12:00am
If you can believe it... Jake is now playing X-Box! He had his brother roll in with the tv and game from teh parent room, and started screaming, "I am going first!" Then he started whining and saying, "Mo, Hunter said I can't go first!" Hunter did NOT say any such thing, but we all had to go with it, because he doesn't really know what he is saying. He also just told us that he is not going to get his hair cut now, but is going to wait until he is five. Alrighty then. I will try to keep up with some of the funny things, because it is keeping me cracked up! Mo

Friday night 11:30pm
Jake is saying, "Dad, I am wet.... hurry!" He is really kinda hilarious when he is on morphine. Staci warned me of that! Todd, I and the boys took in a movie. I kinda feel guilty saying we did that, but it was in effort to give the three of them a little space and time to be together. Also, we were hoping with less activity, he would rest better. Now we are back, and he is still awake. He immediately (again!)asked Todd to take his mom's place in the bed. Oh, and by the way, we got our orders on the way back to the hospital to bring a soft taco and a Mexican pizza. Of course, they won't be eaten, but he finds comfort in holding them, I think. He has a huge burn on his groin region of his right leg where the ground pad was today during the procedure. It has now blistered up and is about 3" long and probably a half inch tall. He doesn't seem to complain about it, but I don't think he can even feel his face right now! We are glad about that! He just jabbers and jabbers on this medicine. He has his nasal canula in his nose, and his sats are at 100 percent. Hallelujah! Mom has scored being back in the bed! Ol' Mo just isn't registering on the Jake scale today!
I am so glad to see how many people had the first words on their lips to be prayers of praise and thanksgiving. We are careful to give ALL the praise to our God, who continues to bless our lives with Jake's! Thank you, Lord, for this day!

Oh, and I am sorry about the burnt okra, Kim... but no half marathonner should be eating that fried mess! GOoooooooooo TEAMJAKE!!

Update... Jake IS eating his soft taco! Yessssss!! MO



Be sure to scroll down and check the update, they are being added hourly.

Ok, Mo just arrived...
We walked in the room, and Jake was in the bed with mom. Jin is taprooted to her chair (like that Eddie E.?), and Don is in the recliner next to the bed. Naturally, I had to pull the covers off a hiding Jake, then he immediately said, "Mom, move." He said, "Todd, get in the bed." There is a little air of anxiety here, but one would expect that. I have told the nurse to keep our room ready, because we are fully expecting to be back in it! Jake is a little bit of a live wire this morning. He has pointed at me and called me a "loser", complete with the L to the forehead, but I think this was orchestrated by his Uncle Todd. His voice is nice and loud, so I am claiming, in Jesus's name, some good prepared lungs!

10:15am Well, it is time for a position change! Jake has asked to move to the chair... and the winner is.... TODD! Don is just adjusting the pillows and blankets to the master's preference. Pawpaw Raborn, Crawford, and Crawford's niece, Kathy, are all watching the circus. Jin Jin hasn't moved! Staci put on her "nice" tee shirt for the day's festivities. If I had to guess Todd is having withdrawals from not checking his email,checking his Fantasy Golf standings, or looking at the News Star yet.
10:22am Don is heading to the shower with rag and towel. Yea! Poppa and Sheila just walked in. This is mine and Staci's dad, Pops's, dad and stepmom. Get that?
10:24am Jake is still all curled up on Jake's lap, in the recliner, watching Diego. Staci knows all the songs... "Rescue Pack, Commmin' to the rescue!"
10:25am A "cold" blanket has just been requested. JIN GOT UP and provided it. She got her a little sugar while over there!
Be back in a minute! Mo
10:44am We just got a call downstairs to come pick up lunch that we didn't even know we had ordered...and THEN,we realize that the DIXON and PAINICH families ordered it and sent it to us. How sweet!! Thank you, Katherine,, Allison, and crew. I was in the middle of playing with Todd and Jake, teasing Jake by pretending to "steal" him from Todd's lap. He would holler "pootyhead" to get me to come back over and do it all over again. Everytime he says it, I run back over and shake the chair all around, and roll it back and forth, and Jake just belly laughs! I was doing it when we got the call from downstairs, and I was putting Jake back down on the pillow on Todd's lap. I said, "oooh, I think he teeteed." Nope, I was wrong! It was smushy, gushy poopoo. Todd's gag reflex went off, and Staci and Jin went into action. That new formula for his NG tube is just not good for his stomach. He was not having these problems until it was changed. Now, he is back in the chair, and the world is right.
10:48am PawPaw Raborn and Crawford are back. They are having to sit on the "bed" on the couch. To have such a nice big room, there is just not enough seats! When Staci was changing his diaper, she tilted his bottom up and held his legs in the air. He said, "MOM! I can do it by myself!" OK, mister! He is probably proud that he is now strong enough to (kinda) keep his legs in the air independently.
Be back....

11:02am I was looking at the guestbook and have a few comments to make. First, YES, Toni, Staci said she HAs seen that episode of SpongeBob. Becky, Staci has really been gearing up for the teaming up of Raven, Zack and Cody, and Hannah Montana. I noticed there are prayers going up from coast to coast... FL team, hello! WA team, Hello! Paige, don't challenge me! I WILL be here, just hang on tight, girlfriend! Linda C., you will be happy to know that the window here has "Hookem horns" and "Jake loves the Longhorns" compliments of Dawn Pierce. Mrs. Lou Ellen, I am sorry I have not called you back. It is a matter of having the number when I have a phone. Anyway, I passed your info onto Staci, and believe me, it is comforting. Also, thank you so much for your prayer this morning.

The nurse's aide, Marie, just stuck her head in and said, "Do ya'll need a wheelchair or are ya'll going to carry him?" Don, said, "I am going to carry him." My heart sank! They must be preparing now. Jake doesn't know that anything is happening today. He should know by now that when everyone starts to gather, something is up! Staci and Don feel that any undue stress for Jake prior to a procedure is just unnecessary. He will DEFINITELY be asking, "WHat is going to happen?" in just a bit.
11:09am Don just said the procedure will be done in the CT room not in OR. That is great! A little less stress for Jake. Don also said they have reserved the CT room for 4 hours! It is such a precise techniques that from what I understand, Dr. Hoffer will actually be letting the CT scan guide him to get as much of the tumors as possible without going past it into the healthy lung tissue. I am praying now for no inflammatory response that makes the lungs flare up and not breathe well!
Also, praying for Mistie Caples... it is the beginning of a perfect little life today for her family.
11:13am Staci commented on all the people who are mentioning her "inner beauty"! She said, "What are they trying to say about my Outer beauty?" SO, please tell her how gorgeous she is! (She is going to kill me!)
11:14am Jake is asking to get in bed with mom. Dad in charge of the transfer! He may be getting tired, or he may be sensing something is up!
11:15am Connie, you can get the cross at Jake's gift shop, listed at the bottom of the page. They are really, really cute! However, better be needing it for, like, Christmas!
11:16am Now it is Lilo and Stitch. Dad is STILL trying to get the blankets to Jake's liking.
Be back... MO
11:46am Well, we are officially moved down to the waiting area of the 1st floor CT scan. I headed out ahead of Staci and Don, because Jake was definitely "smelling a rat!" They are telling him he is going to "take pictures", which for all intents and purposes is true. He will be in the CT area which is right where he DOES take pictures! There was just a little left out, that is all. So, rev em up, peeps. We need a calm, sense of peace for Jake and family. I am starting to pray for God to send his legions of angels to swarm Jake, keeping him free of infection, calm, peaceful, and listening to them tell him he is going to be okay! Also, Lord, please give wisdom to the doctors. Let them know the perfect place to insert the probe, and the perfect place to stop the ablation so that minimal cancer is left and no unnecessary destruciton of lung tissue occurs. Be with Staci and Don as they, again, trust you while turning their precious child over to you.
Be back... Mo
12:08pm I just went back to check on Jake, and he is on the CT scan machine, all covered in blankets. It really IS cold in there. Jake is chatting it up, but I still sense he is "in the know" that something isn't quite right. He first noticed a new person in the room,and said "Who is that?" Then, he had to put on a cooling blanket deal that is not the norm, so he is kinda thinkin' what is up, but Staci and Don are in their lead gowns, next to him,and he is calm. Uncle Todd can't seem to pull himself away either.
12:15pm We are on our way to the cafeteria to group up for a prayer. It is such a testimony when this big ol' family circles up the wagons, grasps hands, and prays. I hope LOTS of people see this witness!
Be back... Mo

Hey, this is Jessi taking dictation from Mo on the cell phone.....

We have now officially taken over the St. Jude cafeteria. All 11 of us!! Someone just came out and said they have just started the procedure on Jake. There is another family right down the table from us who looks as nutty as ours. There is one little 3 year old with a shaved head and scars on it with 6 adults and a few kids hanging around. I went to introduce myself, and found out that they are from Alexandria, LA. All the family support must be a Louisiana thang! Thank you for your prayers as we are all feeling peaceful at this moment. Oh, Hunter and Keelan finally decided to wake up and join the party downstairs. We will let you know something when we do. I'm thinking it has to be a good sign that all of our gear is still in our 4th floor room, and we were not asked to move anything to ICU.

Be back......Mo

1:36 PM
I forgot to mention the treasure chest that is always offered to any kid having a procedure. Jake picked some jumbo JAX. I don't think he's ever even seen jacks. Staci talked him into getting a black plastic skillet and one of those squishy balls that feels gross when you squeeze it. Who knows why! We continue to sit in the cafeteria and await a report.
11:39 PM I just called my office and got a report on Misti Caples. She is out of surgery, and reportedly she and baby RaeAnn are both doing fine. Praise the Lord!!

Be back....Mo

2:30 PM
Don just went down to check and came back with a report that the doctor has completed the first tumor and "got good, high temps" (whatever that means) Staci says it means they burned him really well. Don heard us joking and said "the higher the temp the more immediate the kill". They have started the second tumor, and so far all is well.

Be back....Mo

3:00 PM This is Uncle Eddie taking dication from Aunt MO
The nurse just came in to meet the crazy family in the cafeteria and reported "we are finished." She said the doctors thought it was sucessful and he was able to get to the edges of both tumors. The medical team are about to start a trial extubation. It time to send a Prayer UP!
Don & Staci have gone back to be there when their baby wakes up.
For the record, Staci & I painted pendants throught the entire process, so, although you may not have received your pendant yet when you do, it may have the extra blessing of being painted while Jake was being healed!
Be back when we know more. MO

3:20 PM This is Uncle Eddie taking dication from Aunt MO via cell phone
Poppa & Shelia were headed south back home, MO took them to the recovery area to say goodbye to Don & Staci. When the recovery doors were open MO could her Jake's voice asking for something to drink. PRAISE THE LORD! Not only is Jake extubated, but he also thirsty!!! Mamma & Daddy are in recovery with Baby Jake. All the family are in Prayer of Thanksgiving!
Be back soon MO

4:15 PM
Sorry that today's "play by play" hasn't always been current. For the most part, you were right there with us. Todd, Hunter, Keelan and I have just left the hospital simply to give them some space. And, praise the Lord, by space I mean his 4th floor room. He seems to be in quite a bit of pain, complaining of his stomach. The doctor suspects he may not be able to0 differentiate exactly from where his pain is coming. He has a morphine pump that his mom and dad can dose him with when they feel it's necessary. Right now, everyone agrees he just needs to rest. PawPaw Raborn and Crawford have gone back to the hotel, and Poppa and Shelia have started the treck home. Thank you Jesus for the continuing miracle. Now go and feed your families, bathe, and handle your business, because it won't be until tonight that I complete today's update. Thank you all for checking in a praying all day. MO

Thursday, July 13, 2006 9:41 PM CDT

Howdy everybody...
Coming to you live from the 4th floor at St. Jude. Let's recap the day...
I got up bright and early at 4:00am to make my 6:30am flight. I know that is totally irrelevant, but I have to mention it because I just deserve it being that I am a night owl and NOT a morning person... ok, enough about me! WHen I got to St. Jude, Jake was lying in the bed with his dad, wide-eyed and staring at the ceiling. Everyone else was trying to sleep. I asked Jake if he wanted to get up and play a little and he did. He sat in his "special chair" that he can sit in by himself. We colored a little Spongebob, but he tired out quickly. He didn't seem to feel very good. He told me his stomach hurt, and his mom said the hospital ran out of the formula for his NG tube, so they switched it. Ever since, he has had diarrhea and a little stomach pain. Hard to believe really that they can't get the other kind. His dad thinks maybe Jake was a little tired today because he was up all night after a screwed up sleep schedule yesterday after the PET scan...
and speaking of PET scan. Well, it was really good news. You know he had a CT scan and that typically shows tumors. However, it can show all kinds of things that may or may not be cancer. The PET scan uses glucose in a formula given prior to the procedure. Highly metabolic areas, i.e. tumors, will show uptake of the solution, and it can be assumed that this is an area of cancer. Well, Jake only showed two definite areas of this occuring. Both were the two big spots in the left lung. The good news is that there were not any other spots! The docs suspected there would be due to the high AFP. Actually, there is one suspicious area near the aorta of his heart, but it may not be anything either.
Let me tell you about the highlight of the day...
JAKE LEFT THE ROOM IN A WAGON! He went out on two different occasions. Around 1:00pm, Keelan, Hunter's friend who has been here all week, pulled Jake in the wagon, and I towed the pole of lines. Jake was wide-eyed and bushy tailed, taking it all in! He has not been out of his room in almost 3 months. Can you even imagine? We walked many a lap!! While out, PT came up and they gave him a really good work out. I took pictures, (Imagine that!), and hope to post them soon. He sat at the edge of a pediatric sized chair by himself. A block was put under his feet to help him balance. He watched Hunter and Keelan play hockey in the hall, and then played a beanbag toss game with the PTA. He really worked hard. I want say happily, but he did it!

Don got a little escape today with the two big boys, and got out to the Bass Pro Shop. He said he needed to go down and crank his truck anyway, because it had not been cranked in so long. While they were gone, Jake fell asleep, so Staci and I got busy on some cross painting. I know many of you may have given up, but I PROMISE, you WILL get your orders. What began as a small project got really, really big quickly! Then, given the fact that during just THIS hospitalization, Jkae has had two brain surgeries, three weeks of high dose radiation, severe GVHD of the gut, been on a ventilator for a month, and now a scheduled tumor ablation. That is quite a past 90 days! So, trust me when I say those orders hang over our heads, but we really are trying to get them out. Please be patient. If yours is "urgent", contact Don or Uncle Eddie.

Jake got one of his favorite things today... a WARM BLANKET! WHen the nurse's assistant brought it, he looked at his mom and said, "Ahhhhhhhhhhhh!" Isn't that so cute? He will just intermittently say, "I don't want this blankey anymore." OR, "This blanket is cold." He also is particular about not having it folded, and then again sometimes he wants it folded! It is comical, and the demands are certainly fatiguing at times. I appreciate his having some degree of control over his environment, so I must say, everyone obliges.

Jake got to watch a little of his ol' favorite, COPS, today. And JakeDog, did you know that they were chasing a bad guy in KATY, TX! Did you hear about that, Holly? They were on a high speed chase that led them "right into Harrison County." Thought you would like to know your town made the news, however infamous.

Staci was kinda excited when she saw that Raven is back with the Cheetah Girls.... too much Disney Channel! Believe me! Staci also made me call Jessi and tell her that there are some pictures that just DO NOT need to make the website. She did not appreciate all the long hospital day pictures of her, but I LOVE them all, and reminded Stac that everyone is really looking at Jake anyway. Did you notice his hand up her sleeve? That was a special request. Also, we are playing Wake Up, Daddy, that is one of his all-time favorite games!

JIn has already been Waaaaay out of the way to Chik Fil A and to McDonald's on special requests from Jake. He didn't eat anything either time, but Jin surely did hightail it!

OK, tomorrow is going to be a miracle day! We heard tonight that the procedure might be 11:00am vs. noon. We will surely let you know, so be checking in. His lungs continue to be the primary focus of our prayers! Jake will move right back into his 4th floor room if all goes well. THAT is where we want to be. That will mean he has been in and out and is NOT on the vent! The pain team came in and said he will likely have some pretty intense pain, but they are giving him control over his delivery of morphine, so he should never really suffer with the pain.

And, one of our Believers, Mistie Caples, (who always updates many people of our church on Jake's progress and calls me almost daily to check on him), is going in tomorrow for a C-section at 30 weeks. Would you mind lifting her and her baby girl up so that there are TWO miracles on July 14th?! There are really two kids who need prayers for lungs tomorrow! and two scared mamas!

Well, we are now off to watch Shrek 2 AGAIN! and to get a good night's rest, prayerfully.

I hope to do the play by play again tomorrow. So, check in often, and BUCKLE UP, it is going to be a wild one.

Looking for God to show off HIS power...
MO

Wednesday, July 12, 2006 9:40 PM CDT

Ok, there is now a plan in place....
Staci and Don have opted for the radiofrequency ablation to put a needle into his thorax, send it down into the lung tumor, then send radio waves into the needle, which will heat it up and obliterate the tumors! There should be little damage to the surrounding tissue, and Jake does not have to be cut again! Praise the LORD! In my little research, I have found that healing time is much quicker, and Jake may be up and at ‘em in a matter of days. The docs had to tell them all the risks, naturally, but Staci said nothing out of the ordinary, just yet another consent form to do scary things to their young son. The obvious risk is that Jake’s lungs are already so damaged, and he will have to go on the ventilator to support him during the procedure. They are hoping, and we are BELIEVING, in the name of JESUS!, that Jake will come right off that vent, right off any necessary oxygen, and right on back to normal. There will be no necessary extended ICU stay and NO ventilator in Jake’s future! Dr. Hoffer is supposed to be ‘da bomb! We have been hearing nurses and doctors brag about him since we have been at St. Jude. He has taken a job in the Northwest, so he will soon be leaving the hospital. Staci tells me she has talked to many who have said what a huge loss this will be for St. Jude. She was like, “I’m sure it will be.” But, you know, we didn’t know anything about him.... until NOW! I think I can speak for Staci and Don when I say that all these accolades now mean a LOT to them! I also think that his still being there is because God had this all planned out and wanted HIM to be the one to do this procedure. This is the man who is going to do the final procedure to rid Jake of cancer. Can I get an amen?!

Oh... it will be at NOON ON FRIDAY. So, prayer warriors, start your engines! No complications, NO prolonged ventilator, and a successful tumor killing!

I never told all of you about the very sweet thing that Amy, a St. Jude employee, did for Jake and his brothers. The other night, Saturday actually, before the Nascar race on Sunday, she brought in a couple of posters she had made for Jake, his brothers, and all the adults present. She had us all pick our winner, and made the coolest little “Winner’s Circle” for the next day. The boys and their friends were pumped to choose their driver and put it up on the board, officially. Naturally, Jake had ol’ JJ Yeley by his name! Does that tell you how special this place is? Amy is a real extra miler.

Ya know, I also forgot to tell ya’ll about our special visitors last weekend. Trish and Eli (Emma Grace’s mom and brother... www.caringbridge.org/ar/emmagrace) “put the hammer down” as she said it and hightailed it to Memphis to visit Nancy, Ali’s mom. It was so awesome to see her, and Eli has gotten sooo tall! Jake is actually in Ali’s old bone marrow unit room.

Jake requested “chickaladas”, so Staci had to go to the Target House and cook them like only she knows how... and GUESS WHAT.... Jake is now eating them, with mom feeding him every bite! Woo Hoo! I am just thinking to myself, strength, strength, strength! That is really exciting. He is doing what he does... showing off and proving to everyone that he is going to be just fine.

No PT today, because Jake was in PET scan all day so he was either getting sedated, getting scanned, or waking up from sedation for most of the day. Yucky. I wish this could end for him. Anyway, there are no results yet from the scans. I suppose it will be the baseline for comparison after the procedure. Wow.. Won’t the doctors be amazed to see NO cancer at all? God is going to keep this miracle alive! HE is going to reveal HIS power, and we are going to continue to praise Him for the options we keep right on having, the life we keep on celebrating, and the love and support we have learned as a family.

Please join us in prayer for Jake for Friday at noon. Think HEALTHY lungs.... no complications... ventilator ONLY during the procedure, not afterward.....tumors gone!

MO

And by the way, Paula is not really 40.. I was just having a little fun. She is a ripe ol’ 37 like I will be soon! Wasn’t that funny, Paula?!

Tuesday, July 11, 2006 6:34 PM CDT

Ok, well let's just say there ain't no fat lady singing today. Staci, sounding seriously stressed out, just called me and said the docs are leaving it up to Don and Staci. Obviously, any surgery would bring with it risks. Surely, with Jake's lungs so precarious as they are, he is at heightened risk! But... they will do it if that is what they want. They suggest first, only getting the "biggest" couple out. As Staci reminded me, they can't be absolutely sure what all they are seeing on CT scan until they are in there. IF "in there" is where they go.... there is another procedure called, "radio frequency ablation" that they think may be a better option for Jake. They said it holds the same risk, just maybe a little less of it. I talked to the doc earlier this week, personally, about some other "alternative procedures", and he was telling me that radio frequency ablation carries a big risk of burning the patient. Apparently, this also means interior damage, since that is how they presented it to Staci and Don this evening (as in the same risk as opening him up... AGAIN!). This is what they recommend. As was expected, Dr. Leung stepped up to the plate and said that the bone marrow would not be able to do its job for another month or so. So, we need something done NOW to "buy him some time." This is why they are talking about only getting the "big ones." (I personally can't wait until they see that there is nothing else there anyway... praise the LORD!) He thinks the bone marrow will be active again in about a month and will take care of any small, residual lesions. They want to see Jake getting stronger though, so PT is being put into high gear. Ol' Mo is on the way up.. Debbie Earl, what are you doing this week?!! Holla! Janet, Jake's PTA, is bringing a trike tomorrow to get him rolling. Do you know that aside from being on a gurney, Jake has not been outside in even the hall of the hospital in almost three months!?? I can now hear him in the background when I call, talking up a storm! He sounds so much stronger, cardiopulmonary-wise! We now need to get him physically ready! I called JIn to see if she had heard from the docs, and she said she was on her SECOND Taco Bell run of the day. Jake has very definite demands, and JIn obliges, but he still won't eat. Buttttt. ... if he asks for TWO soft tacos, then there had better be TWO soft tacos, and made to order just as he requested... meat and cheese only. Also, he has to see the sauce with it!! We are his puppets!! And thanks again to all of you who supported Staci and Don in the fundraiser.. they need it to support Jake's culinary demands!! Happy Birthday, Paula!!! We LOVE you... I cannot believe you are 40! MO

Monday, July 10, 2006 11:16PM CDT

First, let me tell you... I am hating not being in Memphis right now, but we are going to do something about that very soon! Don told me that Jessi had stolen his thunder today when I called him to see if we could add some new pics. So, I wanted to take this opportunity to thank her. She works a whole lotta Jake work into her average work day! Speaking of Don and pics, he IS planning to put a special pic of Jake and Faith Hill, who came to the hospital to visit today. They said she was a little bit incognito and would not allow the St. Jude photographers to come into the rooms with her. She would allow the families to take her picture. I think that really shows what kind of person she is! She was not there for the media blitz! She was there to visit the kids! This came right after JinJin called to tell us she had just had lunch with Tiger Woods. Can you believe all this? Tiger and Scott Hamilton are both contributors to the Target House, and they were there today to join the families in a lunch provided by the Target Corporation. Looks like I left a day too soon!

Jin also wanted me to be SURE and tell you all that she was asked specifically to lie in bed with Jake today. In fact, Staci said he got quite comfortable with her, and they slept for about two hours. While they were “preoccupied”, Staci took a little vacation down to the second floor (she is living the good life!) and spent some time talking to Noah’s mom, Allison. They are from Alabama. cb/al/noahjackson or is it visit/noahjackson?

Jake opened more presents today. He got a goodie box from Mr. Skeet Creekmore and family. Staci said “Jake was pumped when he saw the racecar game!” He loves to play X-Box, and for the record, so do his brothers. Hunter and his friend, Keelan, stayed for the week. Poor ol’ Hayden gets right back into the grind of ball practice this afternoon. The Johnsons sent snacks and some racecars, and Mrs. Vhon Dupont sent a LEAP PAD! Jake and Jin have been working on that thing all day! Was it you who sent the baseball uniform? Staci told me, but I got it all confused over the phone. If not, thank you to whomever, and please correct me on the guestbook! One of my favorite little girls, Shelbi Mae, was having a check up appointment and went by to visit Jake with her mom, Emily Wingfield. Shelbi, who is like 7 years old, walked her prissy little self right into Jake’s room and announced, “This is my boy!” This is the same kid who would bring me a single tab top from the can coke she drank at school every time she was at therapy. She would hunt me down and give me one little tab top. I suppose she kept it in her pocket all day long. Isn’t that precious? Emily’s co-workers, the ladies from Century Tel, Accounts Payable, also sent a generous gift of “cashola”, which is always appreciated! Kristy and Chris Ross, she also got your envelope, and thank you very much! Lastly, Dustin is a little guy down the street who plays ball against Hayden. He was going to mow Staci and Don’s yard this afternoon until his dad tells us, “He got a better offer....to go to the movie!” SO, thank you, Doug (Mitchell?) For mowing their yard. That is SUCH a help!!

Jake is now requesting food, which is the way Staci tells me he usually starts his return to eating! The speech therapist came in today and said he can start trying food and carbonated drinks, but for Staci to just watch him and be careful. Well, duh! Sorry, I just thought there would be more to it! Like a progression or something! Anywwwwaaay... guess what his first request is... McDonald’s!! Yeah doggie. I bet Jin will be going there tomorrow.

Team Jake (link is above) met tonight, and I will tell you I was so touched by all the support Jake has in this community. There are several who have only recently begun walking at all, but who have every intention to do the ½ marathon. Now THAT is the spirit! We took a picture which will be on the Team Jake site tomorrow. The 24 people at the meeting each introduced themselves and told their story of why they are doing this run, and how long they had been at it. Thank you all so much for loving Jake (and me) and doing this to help irradicate pediatric cancer. If you want to sign up, there is still plenty of time to train for a ½, full, or 5K! If this is not your cup of tea, there will be other ways to support, so just you wait!! I would tell you tonight, but in light of tomorrow’s meeting, we have proverbial “bigger fish to fry”!

Now for the meeting....
It will be at 4:00pm, so the results won’t be posted til late. It is a very important meeting. Jake’s AFP increased to 9300 today. It is rising substantially and quickly! This means there can probably be no delay in having surgery! The surgeon, Dr. Davidoff, will be in the meeting. He has already said he can get the tumors.. Praise the LORD, the tumors are in resectable spots, like on the outer border or in the fissures between the lobes. Hallelujah! However, his words to Staci and Don were , “We need to make sure this is a necessary surgery.” In other words, he wants to ensure there is “something in place” to take care of any residual disease if he were to have a successful resection. Since Jake can’t have more chemo, WHAT would be the plan is his question! Then, Jake’s solid tumor doc, Dr. Furmon, will probably be there. He is likely going to be a little more pessimistic... maybe not, but he has dealt with solid tumors a lot, and I think he tends to see the cancer get ahead of the treatment, and I don’t know how he will feel about the risk of Jake being back on the operating table. Thennnnn.... there is the bone marrow doctor, Dr. Leung. He is the guru of doodoo when it comes to bone marrow transplants. Truly, world renowned! He came in Wednesday when I was there, and said, “Well, when Jake has his surgery next week, and gets off the vent, then we will see if we can get him out of this hospital.” Ok, I like that! Someone actually SEEING Jake off the vent and out of surgery succcessfully! He said “Well, we KNOW that Jake’s donor marrow works for him, because we saw his AFP fall so much after the transplant.” (And we also know he had two brain surgeries to resect tumors, but we aren’t reminding him of that right now!) “SO, we can assume it will work for him again.” Jake’s bone marrow date was started over, and he is now at about day 20 vs. the day 130ish, he had finally achieved. Dr. Leung said in all his years, he had only seen this once before where a kid’s marrow stay fully engrafted, but just not work. That is what happened with Jake. When they tested the marrow, he was 100 percent German lady. However, it stopped making blood cells for him... thus the constant platelet and red cell transfusions, and the total LACK of immunity, and therefore.... a fungal infection gone amuck! Dr. Leung was probably shocked as I squatted down, threw both my hands up, and said, “Well, give me five on that!” As he reluctantly “gave me five.” I said, “Alright, you go in there and ADVOCATE for Jake.” We are counting on YOU to make them see that there IS a plan in place... and one that can work.

I was going to list a whole bunch of risks, but IF the surgery is scheduled, we will list these, but only as prayer points. Instead, please join us in praying for a clear and decisive path to Jake’s being RID of cancer. I think about the right lung that underwent a surgery in September, and is CLEAR! His brain is CLEAR! His liver is CLEAR. By the way, it is the LEFT lung that needs to be the focus of our prayers!! Well, I guess the RIGHT one too, since it will have to tow the load while the other is deflated for resection... ohhhh, there I go... I am shutting up now. Please sign on tonight or tomorrow, and let Staci and Don know how much support they are getting. It means so much to know there are prayers all day long! Someone will certainly let you all know what is going on when they know. Pray for discernment and wisdom. Pray for a consensus of treatment. Pray for the doc’s to have compassion and empathy, and to that they can really put themselves in the shoes of the parents of a really, really cool and terribly funny four year old. MO


Monday 7:37am
Good morning. Just dropping in to let you know that Jake is doing well. The team removed his oxygen cannula from his nose yesterday and he did great. He held his sats at a normal level all day. I did have to put the oxygen tubing by his nose and let it "blow by" his nose while he slept but that is to be expected for a few nights. It is a miracle that he spent the day with no oxygen support after what he has been through. I have not seen his labs this morning but I'm pretty sure he will need blood and platelets. He was close yesterday and by looking at his skin color he could use some blood(which will also help with his oxygen levels).

The team will meet on Tuesday to discuss options on Jake and the plan for the near future. We are anxious to know what they're thinking. The thought of Jake having to endure another major surgery is gut-wrenching.

Mo, Uncle Eddie and Tucker are back home. Nana, Pops and Hayden will head home today. Jin is back in Memphis and Hunter and his buddy Keelan are staying here for a few days. Jake loves his family around him and he has sure enjoyed all of the company over the past couple of weeks. Our family works so hard to keep Jake, Staci & myself covered with whatever we need. They go through alot to do it but we sure appreciate it.

If things go well today then I promise some new pictures on web site late tonight. Just a quick run to Office Depot and then I'm in business.

Keep praying for our big guy. He is fighting such an amazing battle. He will beat this disease and go on to live a wonderful life.

BELIEVE,
Jake's Dad

Saturday, July 8, 2006 9:27 PM CDT

Good evening to you all..

Let's pick up where we left off...
Last night, Uncle Eddie and Tucker showed up to join the Raborn circus. I have only to say that Uncle Eddie hit the motherload and got to get in the bed with Jake and fall asleep. (SO, suck his toe, Uncle Todd!) It was around 1:30am when we realized none of us had had supper and were hungry, so we ordered pizza to be delivered. We had to wake up Uncle Eddie to head to the Target House, where we arrived somewhere around 2:30am. Little Tucker (whose bedtime is usually somewhere around 9:30pm; so only five hours delayed) was wide open!! I asked Eddie if he wanted us to get him a Red Bull, and let's just go til morning! Then, at about 6:30am, Tucker was back up and singing, "I'm Ready, I'm Ready, I'm Ready... I'm Ready, Promotion!" (To all of you with Toddlers or an otherwise affinity to SpongeBob, you probably know that episode!) Anyway, I get a knock on my bedroom door (eearrrllly) to put some flames on his power ranger's hands because his dad was in the bathroom. Anyway... onto the hospital..

Jake had another good night. He is not really needing any Ativan to help him get "comfable", and seems to be doing much better with withdrawals from the meds. Praise the LORD!! Praise the LORD!!

Karen Van Sickle is a local Believer who has been up to visit a few times. She brought lunch, and Staci's exact words were, "Man, you talk about a lady who can cook!" Staci really LOVES cantaloupe, so she was pumped that was your fruit of choice, too. ALso, she had me go to Chik Fil A a week ago for chicken salad. It is one of her faves. She said yours may be the best she has ever had!

Jake and I were able to preoccupy ourselves while mom and dad ate in the parent room. We played Color Wonder, and Mo has a little problem with wanting to color her own page! Jake would reach over to my section and put a few strokes of a random color on it, then bust into a devilish grin! Everytime the Floam commercial comes on TV, he says he wants some, so I went and got him some before hitting the hospital today. We also played with that awhile. I made a pair of glasses out of the Floam, then after meeting many people througout the day and amongst the folks in the hall here, I look in the mirror to see that my sister has NOT told me about the Floam residue all over my eyebrows. Really cool! He got in his special chair and we played Go Fish. One time I asked him for a particular card, and he grinned, obviously thought about it, and said, "Go Fish." I said, "Are you cheating?" He said, "Yea, I am cheating." Still, I had to draw!

I walked into the bathroom just in time to see Tucker pulling the standard "call for help" button when trying to flush the potty. He also asked Amy, a visitor who is also joining TEAMJAKE (and no, she is not a runner... yet!), who was wearing scrubs, "Doctor, what is your name?" WHen told it was Amy, he said, "Well, Amy, would you please get up there and turn on my movie." It was right about then that Jake was punishing us all by not letting us watch TV or a movie, but insisted that we watch the blue screen that just says, "DVD" and floats around waiting on you to put in a DVD. He was mad because he says he is hungry. Although Staci asked for Speech to come up and answer some feeding questions, MANY times this week, they never came. So, he is still very restricted, and for safety, they cannot let him eat. We definitely try to be respectful and stay OUT of the room when we are eating. He also really wants to chew gum, but with no clearance, we certainly don't want any aspiration into his lungs which could turn into pneumonia... so we will wait for the word.

Aunt Bonnie and clan, Jake LOVES his Superman PJ's. For all of you who have been wanting to see pics, I think this is the one to post. He looks so cute in these. He has a cape on them and everything. He wanted to put them on for when his brothers arrived. Miss Shirley, and others who gave clearance, YES, Staci DID allow BOTH boys to bring a friend up! Pops and Nana may never be the same though! They lovingly brought the boys up for just tomorrow so they can go to the Tim McGraw/Faith Hill concert with their mom. Jake obviously can't go, so no one is talking about it. ChildLife provided Staci and family with tickets. Hayden's team won the tournament, and now goes to District. That means ball practice starts back on Monday, so Pops and Nana may be hitting the road late tomorrow night AFTER the concert to take them all home. Hunter is contemplating staying. I asked Hunter how he felt Jake looked. He said, "REALLY good." I wondered, since any of you who have seen the post ventilator pic know that he looks very different. His liver has taken a lickin' (but might I add has kept on tickin'!!), so the elevated bilirubin causes jaundice, thus skin and eye color changing. His bili is down from yesterday, and seems to be on a downward trend. Praise the LORD! Also, he is taking anti-rejection meds that cause him to change colors further. He is swollen due to the steroids. This makes his face puffy. It is a quite familiar look for the kids on bone marrow service. Anyway, Hunter said, he thought he looked so good because he was hiding under the covers when they came in. He said he wasn't sure whether or not he was playing. When Hunter last saw Jake, he was NOT playing! So, I think it did Hunter's heart good to see the improvement. They don't see the discoloration or swelling; that is for sure. They just LOVE their little brother!

Bougan family from Colorado, can you believe it... we FINALLY let the boys open their gift from you. We actually let Jake open it, and HE got to decide who got which movie. That avoided a big battle.. anyone who has boys about the same age understands that situation! Their exact words were "Sweeeeeeeeeeettt, dude!"

Right now, Jake is sitting UP in his mom's lap, throwing a Floam ball to his brother Hayden and Hayden's bud, Grant. He is again belly laughing as they are doing just what you would expect from GREAT big brothers... overreacting to getting hit from the seriously STRONG arm Jake has when throwing the ball to them.

OK, for the Simple Seven:
1. Jake's lungs to show remarkable improvement where he is able to get off the oxygen (nasal cannula). The small improvements that have been happening (longer sentences, louder voice, and lower oxygen requirements) are proof that he is making headway. If the surgery is to take place next week, Jake needs to be as strong (pulmonary wise) as possible. SO, the lungs are our PRIMARY focus in prayer. He will need to have enough lung funciton to have them cut on, yet again, and still have the capacity to breathe alone after he is off the vent following the surgery. Some are saying he may never get off the vent... we KNOW he will!!
2. Jake's doctors to have so much unbelievable wisdom and OPTIMISM about Jake's proposed treatment next week. Also, that there is a concensus and clear (and successful!!!) plan.
3. Jake's throat to heal, so he won't choke on fluids and won't have food restrictions. He seems ready to eat!! He is finally keeping his feeds down better(only threw up once today), and is not having any residuals when they pull back from the NG tube. That is a PRAISE! It means his gut is absorbing the feedings, and it can therefore be used for adequate nutrition.
4. We need Jake's liver and spleen to decrease in size. If it is smaller, he will breathe better, because there will be less upward pressure from under his diaphragm and his lungs can expand more for better breath!
5. Someone asked about his physical strength, and well.. .he is VERY weak! Every day is a little better, and the more we can keep him up , the better it seems to get. He is more interested in playing games, and requests particular ones. He is sitting up from a slightly reclined position, so he is using his little abs more. His legs are really kind of non-functionaly at this time. He doesn't bear any weight on them at all. He can move all the joints of his lower extremities, so he is going to be fine. Please just pray for his patience while he gets stronger, since he has to sit and watch the world happen around him, or ask people to come to him to interact. His little hands are SLOWLY getting stronger too. He held a marker a little more securely today, and can push the buttons on his favorite play cell phone. Also, with all the ball throwing now, he is working out without even knowing it.
6. Staci and Don to have clarity and peace regarding any choice they make next week. (Have I mentioned the big meeting is Tuesday?) Because they have always BELIEVEd Jake will be healed, they just feel this is another step in that direction. No need to get all dismayed now!
7. Complete healing on this earth. This request has never wavered! It is still our ultimate prayer. We asked a long time ago that Jake's healing be undeniably from God. So, with all that he has overcome, it can be said that Jake's healing IS a MIRACLE! HIS LIFE IS A MIRACLE!

Peace out! Mo

Friday, July 7, 2006 2:33 PM CDT

Greetings from the 4th Floor. At least for now! The doc came in, and there are some bone marrow transplants that need rooms this weekend, so once again... someone has to move to ICU where the beds are plentiful. Praise the LORD! Jake is one of the only kids on oxygen, so again me may hold the short straw. Remember pre-ventilator when he had to move? Well, THAT didn't turn out so great, so we would like to stay put... not to mention we won the lottery with getting the big, gigantic room where we can have visitors, all Jake's equipment (special chairs), his toys, and Mo's scrapbook stuff. We want to STAY here~!! In fact, a little while ago, Jake's oxygen was falling down onto his chin, and the nurse noticed it. He was keeping his sats above 95 percent without any help!! Staci said, "Hey maybe if we are not on oxygen, we won't have to move!" Well, that lasted about five minutes, and the monitors started beeping. SO, it is back on.

Jake had PT this morning. He sat up and played Elefun, one of his all-time favorite games, kicked a ball, and eventually played Wake Up Daddy. Our PTA, Janet, was here, along with a student from Minden. The student, Megan Baldon, is a PTA student from the Bossier Parish COmmunity College near home. One of our faithful followers, Kim COx, is in charge of the program and keeps her class all abreast of Jake's progress. Kinda cool to see a homegirl!

Staci wanted me to be sure and say thanks to Molly for the gift card to Chili's. ALso, I found a name, Glenda Schmidt,on the box of Canadian goods Jake opened yesterday. Thank you, maam.

Todd just THINKS he is going to leave today. Jake ain't no dummy! Everytime he starts toward the door, Jake shames him by saying, "TOdd-Stay". He makes a gesture that looks like half of a safe sign in baseball, indicating "NO you aren't going anywhere!" The two of them also came up with a sign to indicate "NO GIRLS" by holding two hands up, palms forward, and shaking them back and forth to keep me off the couch. We started playing a new game where I get in the rolling recliner, and Todd pulls me by my feet all around the room. Then, I try to race to the couch to sit on the BOYS ONLY couch. Todd intervenes and pushes me back. Jake was BELLY LAUGHING!! He was laughing so hard that his sats dropped and his monitor went off! Boy, that was a great sight! It was about then he looked at his mom and said, "Man, they all crazy!"

Jake definitely has more strength to his voice. He is saying, "Mom, I wanna get back on the couch." See.... that is more than the three word phrases he was struggling to get out earlier this week. He also played a little game with Todd where he was yelling, "Get over here NOW.... I MEAN it!... OVer here, NOW, mister!" All that yelling just had to be good for his lungs. Another long sentence just uttered.... "Mom, why do you need to go to email?" He is waiting on his computer game, and was NOT appreciating the stall.

Jake just got tired of sitting in Todd's lap, so he moved to the couch with mom. He said, "Don't go anywhere" to Todd!! Shaming him bad! Speaking of favorite uncles, Uncle Eddie is trying to formulate a plan to head north tonight. Jake's cousin, Tucker, may also get to come. He is Jake's age. This may or may not be the case if Jake is in the ICU room!

For a little personal information, Jake was just crammed so far up mom's sleeve that he said, "Mom, I'm touchin' your twilly." He was giggling! Bad, bad, bad!

OK, so we opened some more presents this morning, from the Pinks and actually got into some of his Easter basket goodies! He opened the doctor's play kit, and said, "Oh, my word!" That was so cute! Then, he got out the pretend shotter (syringe) and gave mom a shot. She pretend cried, and he said, "She needs a BandAid!" in an urgent voice. Then he said, "It's just saline!" He knows WAAAAAYYY too much. Whe Staci gave him a shot, he pretended to cry too. Then, he said, "I need a BandAid!" Apparently, the ol' BandAids cure a lot. Staci put on his play surgical mask and Jake said, "Oh my goodness."

Now, he is propped up on a pillow (Rebel flag pillowcase... have I told you what Rednecks we appear to be up here? Our hometown football team are the Rebs. Not to mention the camo tee shirt and his favorite show being COPS!). He is playing a new golf game on the "pooter."

Daddy Don is resting in the parent room. We can't wait until he comes in, because Jake got a fake poot machine with a remote control in his Easter basket to use on ol' Dad and the nurses tonight! Sweeeeeeeeeeeeettt!

THERE, Teresa O.... aka "Mrs. Impatient!" Ha

MO, Staci, Don, and Todd......

Thursday, July 6, 2006 4:01 PM CDT

OK, I am back, and NO, Lesley James from Ruston, LA and Kim Coker from GA, I cannot keep up the pace of yesterday, but thanks for the vote of confidence. I may have carpal tunnel. I was writing on everything in sight to keep accurate notes and times. The nurses were getting tired of my asking, “Why are you here and what are you doing? Oh, and could you give me the correct spelling of your name ” Ha Jane Jones of TX, so you know, Jake DID make it with mom and dad gone. In fact, Todd’s arm had lost all feeling and we debated the risk of moving him and waking him up with them out of the hospital. We “went for it”, and he readjusted and did just fine I have to keep an element of suspense in our “reality show” to keep you coming back for more... It is the “Who Shot JR?” strategy

Todd and I got ready and were heading out of the Target House (to the right to get some lunch) when we get a call. Todd is saying, “Hey, buddy... yea, we are on our way.” Then we made a big U turn and headed right to the hospital. It is so cool that he can talk on the phone. Really, it is hard to understand his speech, because of his weakness and the problems with articulation from the loss of hearing early in his treatment. But it was clear, that he was saying, “Get your hineys up here ”

When we walked in, Staci and Jake were in the bed playing Dora on the computer. I heard him say, “Awww, man ” when Dora didn’t get the disco star. Todd presented him with a new golf visor with LSU on it. He gave the biggest grin. He immediately had to try it on, and then try it with sunglasses on top, sunglasses on his eyes, then backwards like Hayden.....I took pictures of it all Within minutes, he said, “Mom, change with Todd.” He wanted to get in Todd’s lap again and there he remained for hours. Yep, Uncle Eddie, “Lukkeeeee” indeed

Just gonna take a minute here to give a few shout outs, since I have some computer time and got to read the guestbook entries... Hello to Judy Cousans who decided to come out of lurkdome and let us know she was there Margaret Melton, Nicole’s bud, I thought you entry was quite moving. Sometimes entries especially move me, and I was teary reading yours. Debbie, thanks for the info. I just thought “thin liquids” were “thin liquids”. We have a call into Speech right now to see if he can chew gum. The info on 90 degree angle is helpful. We have not been doing that, and I have noticed that he coughs and struggles a bit after EVERY single sip. Staci coaches him to take very small sips though. Miss Brenda, I was cracking up at your suggesting my staying in one room all day being a miracle was a hoot. Are you saying I have attention issues? Hyperactivity? The nerve Zhohn Duport, just because you asked, Jake would probably like a new DVD or computer game. We have found with the games the a C on the cover means it is for small children vs. the E for everyone. Those are much more suitable for Jake. He has all the Dora games, I think, and loves them. He likes the Tonka Truck game (and has it ), but seems to like games wehre he has to dismantle or build things. He also likes “exploring” environments like on the Dora game. If you have questions on whether or not he has it, call the room 901-495-5406. As for DVD’s, well he has been in the hospital for the past 90 days, so if there has been some kid movies released recently, he probably doesn’t have them. He is turning into a big boy, so animation is not the only thing he likes anymore. He really liked Kicking and Screaming with Will Farrell, so those funny poot/burp, goofy movies are also his cup of tea. Just some suggestions, and thanks for asking. Lisa Tanner, thanks for caring about the Twizzlers This is my proof that you REALLY read the whole thing through “Tool Time Todd”, you are really impressing us with your skills... first a fence..next the WORLD (insert evil laugh)
Dawn and Karl would like everyone in the Monroe/WM area to know that there is a TEAMJAKE meeting at Melanie Massey Physical Therapy tonight at 5:30pm. If you are signed up to run/walk, go meet your teammates. If you think you may even KINDA want to be involved in the December event, go see how the “real” runners can motivate and encourage you AND provide a pretty “easy” training program for the ½ marathon in December... really Lots of people who don’t run at all are signing up. There is a 5K that Jake’s dad will be doing, so you can join him in that too. One of my favorite kids, who happens to be in a wheelchair, is being pushed by his dad in the 5k this year, in honor of Jake. Sooo, ANYone can do it For more info, call Dawn Sumrall at 318-396-1969 (that is at MMPT) and she will tell you more about the event and meeting tonight.

We always want to offer our support to other caring bridge families, and a MN believer has told us about www.caringbridge.org/mn/drewolson ; a parent who has lost two children. I am quite sure he could use our support and encouragement. Also, Don helped a parent last night get a picture on the website. That was around 1:00am. Well, go visit them too Marcus’s mom is dealing with a recent ICU stay and now in bone marrow unit right down the hall from us all alone. They were also our next door neighbor at the Target House. She could certainly use an encouraging word. www.caringbridge.org/visit/marcuspinsanor

Ok, we just had about two hours of “PT”. Jake found a cool new way to sit on the couch, propped up by pillows, and he, Staci, and I played, “Don’t’ Wake Daddy”, Monopoly Jr., and a Fantastic Four puzzle. Then, we asked him if he needed a break and he said no, so we opened a gift from Allen Smith, and used his new tools to make all kinds of cool stuff. He seems to be tolerating more upright-ness and “activity” every day. He still has on a nasal cannula, but with it, his sats are 100 percent. His blood pressure and heart rate has been better today. His breathing rate is slower too. That certainly makes his Aunt Mo feel better. I can’t hear him breathing today!

We have Nurse Crazy tonight. That is really what everyone calls her... Stanton named her that a couple of years ago. She is as energetic as our crew, so it should be an exciting night.


Mo

OOPs.. I just got word that the TEAMJAKE meeting is Monday night, not tonight.. SOrry
And, Jake just got to open a couple more presents... one from Carmen and the Tim fans. and one from Kenny Chesney fan club. Sorry we are not clear of who sent it, but it was a nice big prize package of goodies. He put on his Canada cap and we have already used the window markers to promote a little more PT! Then Jake FINALLY got to open his very cool bear from www.bearhugsbear.com THanks, he loved it!! He put his new visor from Uncle Todd on it too. I have a really cute picture of Jake and his bear. And Jake painting the window, and Jake with the cap on and Jake holding up his KEnny Chesney shirt and Jake and mom pilfering through the loot, and.... you get the "picture"! MO

Wednesday, July 5, 2006 11:52 PM CDT

Look all the way down, I have now added the day’s activities through almost 8:00pm Keep checking the BOTTOM of the page, because I am just going to add to it through the night.

I thought I would keep up with the day and share it with you...
7:30am I am awake and moving Jake from the bed to the chair in his dad’s lap. He always has specific requests, like now, “I want to sit on my pillow.” This is after a bout of “I can’t get comfable.” Jake had a pretty good laugh at Dad’s hairdo this morning. Don slicked it on back (and up) and said, “I am Jimmy Neutron ” Jake thought that was pretty funny.
7:50am Moving Jake back to the bed. He wears out sometimes kinda quickly when he is in the upright position. Me, Dad, and Jake are watching Hitch. Jake laughs when the big dude starts trying to dance. WE are all laughing with him, since it is such a sweet sound. 8:00am Nursing asst. in to check his vitals and get his weight. Mo has to stand on the scale and zero it out before I hold Jake to get his weight, subtracting my LARGE number Bless his patient little self. Dad says, “Don’t you give Mo a hug.” And Jake squeezes me tight. He is so warm and perfect. I get some sugars on his little neck I still just LOVE his bald head. Oh, by the way, we are feeling a little stubble lately
8:15am “Dad, I want to get back in the chair.” “Mo, get me my computer.” Still watching
Hitch.
8:30am “Dad, I have poopoo.” Mo has to move ol’ boy to the bed to change him. I pretend to forget to put his diaper back on , so he starts laughing, and saying, “Dad, look what Mo did. She is going to put me on my pillow with my booty.” We play a minute with plastic glove. Not as much fun for him as I thought it would be
8:40am While I am up, I go down to the nutrition room and get some ice for my morning Diet Coke, and I pair it with a brownie Delicious and Nutritious
8:45am Doctor in to listen to Jake’s lungs. Jake never looked up from his computer. He is playing Tonka Trucks, Blue’s Clues, and Pirate Poppers.
8:50am “I gonna be sick.” I run for a bucket, and up comes some of that nasty formula that is going in his NG tube. It stinks Staci is getting a little rest, and is asleep in the parent room. Don is so uncomfortable and hot, but he doesn’t dare move When Jake finally finds a comfy spot, nobody moves a muscle. I wish I could make Don feel better. I can hear Jake brething from across the room. Oh, and Hitch just went off, so we have to find something else
9:00am Nurse in to deliver meds and bring in mouth care. This is what made Jake throw up yesterday, (we think), so I am not sure if this is a good idea. Jake asks to get back in the bed. He is so patient when the nurses do their thing. Bless his little
heart. Dad is surfing the tube. Nurse just squirts Jake’s meds accidentally on Don. Yuck Jake’s cough seems to be getting a little stronger. That is a good thing, that he can clear his airway or lungs when they get junky. It also means he is a little stronger in his abs to force the air out.

9:05am “Mo, I have teetee.” We change his diaper, and dad makes a beeline for the bathroom. Jake says, “Mo, let’s hide.” Have you noticed his sentences are really short. His breath support won’t all ow much more. We hide under a pillow fort, and he giggles like it is a brand new game when dad finds him.
9:10am I almost won the grand prize getting to lie with Jake. But, he changed his mind, and dad is back in bed with him. Poor Don... Lying on the same side hour after
hour in a cramped little bed. His hip is killing him Hopefully, Jake can get
comfortable and rest a while. I cannot believe that Jerry Springer is on TV
Actually, he is just hosting a show on E
9:20am The nurse is back in to see why Jake’s sats are falling. His alarm went off. She finds that his nasal cannula has come out of his nose, and when she listens to him with her stethoscope, she finds he is “grunting a little”. She supposes this is due to working harder to get breath since the O2 support of the cannula was lost. Withing minutes, he is leveled back out, and his sats are 100 percent. I can still hear him breathing though. Poor little guy. Breath should not be that hard to get The nurse also gives Jake his mouth care with a swab and some nasty meds. He does it without a bit of complaint.
9:55am Jake, Dad, and Mom are all asleep. So, I am going to take this opportunity to head to the Target House so at least one of us can be clean I will start back on this when I get back. The nurse’s aide just came in to do her stuff, and bless her heart, she decided to let him sleep. That is a rarity She did get the chart where we are keeping up with anything he deposits in his diaper. They decided not to put Jkae on fluids when they stopped the TPN, so they are making sure he is urinating appropriately. By the way,it was a rough night again. Staci asked for Ativan at about 1:45am, and that REALLY, really helped him rest. Oops, Dad is awake and searching the tube again... pray for his left hip Mo
1:25pm I am back.. I made a little lengthy trip but got much accomplished I bathed, ate lunch, bought lunch for the two adults present and bought some new scrapbook paper. I have all my scrapbook stuff here with me. I am determined to use this time to catch up Jake’s scrapbooks. I am quite behind. I hope to incorporate some of the journal entries in with the pics (have I mentioned over 15,000? ?) which have been taken since his diagnosis in 2004.
1:35pm Jake is now in his Tumbleforms chair... a fully supportive chair that he can sit in all alone. When I walked in, he said, “Mom, let’s show Mo.” The new toy he got from Brady yesterday is now charged and ready for action. Jake has figured out how to operate the little remote control car, and we had fun “tricking” the nurses by letting it race out the open door to his room. Jake has just asked for all his computer, so now I am right beside him, both of us with laptops in our laps He
is playing “school”, so Jin you would be so proud of his choice for academics over adventure games Mom came in with her camera, and we “hid” behind our computers. With her standing above us, I am quite sure these will be cute pictures.
1:50pm Jake is back in bed. He had enough. He is worn out from that little bit of activity. I offered to put a movie in his computer for him, but he said, no. In fact, I just got
another order just came in to lower the head of his bed. I then had to create a nest for Staci beside him with pillows so she could have her head up while his is down
so she can function in a moderately upright position. The room, by the way , must
be around 80 degrees as Jake is constantly cold. Maybe that is a by product of
healing Mo
2:00pm Feet hurting... mom now rubbing Staci is making fun of me because I won’t get
up and immediately follow her commands because, as she puts it, “Mo can’t get up
because she has to type those words. She can’t get up or she may miss something we do today ” She makes fun, but aren’t you liking the variety?
2:03pm Nurse in, telling Jake how cute he is... I put a bunch of A-dorable pictures of him on the door out in the hall so all can know how Jake looks when he is feeling good and strong, AND how he will soon look again. Nurse says his lungs sound good. And... finally, Don is back from his marathon trip down to the vending machine ( the only one is on the first floor). I am putting that in my suggestion box for St. Jude... put vending machines on all floors Ja
2:07pm Jake is now reading my book on scrapbook ideas. And they made fun of me for buying it. Phone call... Staci answered it... I am just writing this to get on her nerves It is Jin... Surprise I just talked her into staying until Sunday. She was going to ride back from her fun week at the beach with her friends. She went for her birthday. She was a little worried about Jake... good ol’ Mo was responsible for that Sorry, Jin... just a kneejerk reaction, I suppose.
2:15pm Nurse Kristin is back in to clear his pumps. We are now having a little laugh at an off-color remark I made about Don and Staci and more clearing of pumps... sorry I am asking for a miracle, so I will try and refrain Staci is changing another teetee diaper. He always knows when he needs changing and announces it immediately.
2:20pm Staci is now doing a dressing change. These just never seem to get OK with him. He has already requestedx Dad to the other side of the bed to hold his other hand. He just announced, “GO ” He is so funny. He fisted his hand and pumped it, like the official start of a race. His other hand is in heavy exploration somewhere I won’t mention. Ok, all done, must’ve been just a quick scope of the region
2:33pm Jake just heard the theme song to SpongeBob in the background and said, “Ahhh, Mom ” The two of them started shimmying and shaking to the tune. Mom headed to the bathroom, and when she came back, we built a pillow fort to “suprise” her. We are all well-trained to hunt all over the room, pretend to sit on top of him, and
so forth and so forth....
2:25pm Nurse Kristin back in to do a flush and start Vancolmycin. She also had to answer MO’s barrage of questions as to WHY he is still on this I am happy to announce she gave a suitable answer Oh, by the way... Staci said, “Tell them I am now having a heat flash ”

2:42pm Don is now the person of choice to move to bed duty. He first went to the bathroom, and again came out to a “hiding” Jake. He had two small toothbrushes
stuck up his nose when Jake pulled back the cover to surprise him. Needless to say,
those are now in the trash Ok, and now there is some “funny” burping amusement going on. Gross
2:45pm Change of plans... now Staci is back in the bed.
2:46pm Nothing to report, so I will take this opportunity to tell you that Monday’s AFP came back at 7700. NOT good It has not been that high since before brain surgery. Wherever those stupid tumors are, they are growing fast. We need them GONE.
2:48pm Guess what... another change Now it is dad who is being summoned to the bed
3:00pm Still just chillin’; watching Jimmy Neutron in bed with dad. Staci is on the computer and I am on the couch, observing it all
3:28pm Wow.. Almost 30 minutes with no interruption. Now, Jake is “uncomfable”, so we are trying to regroup. Staci...back to the bed Nurse Kristin is in with Reglan for Jake’s stomach. The nurse practitioner, Sandy, who took care of Jake for a year and a half just came in to visit. That was very thoughtful of her. Once Jake is off their service (solid tumor) and onto another one (bone marrow team), you really don’t see the old team much anymore. She went out of her way to come visit
3:48pm Jake is complaining of pain in his hands. He just squeezes them and says, “Ooooh, they hurt.” Staci called the nurse in. She thinks it is neuropathic pain related to a side effect of a med. He has a tendency to get the same problem in his feet.
4:05pm Discussion with a “fill-in” nurse over whether or not Jake needs morphine. She had to call down to Kristin who is on lunch break, to see what is used for pain. Jake hasn’t had morphine since ICU, and he seemed to have an itching outbreak. Staci decided to have them just hod off since his complaints seem to be slowing down.
4:08pm Nurse kristin in to give tachrolumis (whoa on that spelling ). This is a suppressant to the new bone marrow. He is also still on a steroid, also to suppress. Staci had some questions about all this “suppression” since we need all hands on deck to fight cancer. She said they are both used prophylactically since he had a recent bout with
skin GVH and there was a possibility of liver GVHD. He has had good blood pressures today, and Kristin seems to think he is breathing better.
4:11pm Time for mouthcare again. Kristin gave Jake the choice of whether he wanted to do this or not, and bless his sweet little heart, he opened his mouth so weakly, and in she went. He handled it like a pro.
4:18pm Now we sit here in the dark. Jake does not like any lights on, so no one else gets to
see anything but a little light from behind the blinds or the TV or the glare from the computer This is ALL the time
4:21pm Jake is really, really weak. He is trying to play with me. He mimicked my sticking out my tongue and I pretended to “steal” it. Then, he tried to raspberry me with his little tongue, but couldn’t really get any noise out. He is so cute for even trying.
The nurse came back in to give answers for the suppressant drugs too. Jake will start having his methylpred (steroid) weaned tomorrow morning by 25 percent a dose. Well, good Now we need to pray that he has no bouts of GVHD while this is occurring.
4:33pm I went over to the bed to initiate a little play with Jake. This is about the extent of our play, but he giggled, so it was successful. I would pull the covers from the foot of the bed, so they slid down form his chest to off his feet. He would laugh the whole time, kinda his sly little mischievous laugh I surely have missed that He and mom are looking at my slideshow of pics on the computer screen that is my screensaver. I can’t tell if Jake is happy to see the pics or sad. Once before, when he hadn’t been home in a long time, I remember him getting teary when I talked to him about memories of home and showed him pictures. He was kinda somber as we looked today. He has had such a full and happy little life. I can tell by looking at those pics He is a much loved kiddo
4:34pm “I got poopoo”... And Mo won the lottery In fact, it was only teetee, and again, I “forgot” to put his diaper back on . He thinks that is just hysterical. Staci...not so much. She is in bed with him, and said, “Get it on him before he pees in the bed ” OK, ok
4:37pm I just scanned the website, and wow... thanks for the lesson on number seven I am not even kidding, that has always been my favorite and “lucky” number too It is always my preferred softball number and if we are ever playing “guess a number 1-10, guess seven

4:40pm
4:40pm That was for my Aunt Bonnie, who wears TWO wristwatches Ha Ha I walked down to see our old Childlife Specialist, Amy, who reported she will be moving to the 4th floor permanently on Monday, if we are still here. I said, “oh we WILL still be there ” Yeah Jake just loves her. I also made a little trip to the ice machine. Man, I need one of those It has great ice... kinda like Sonic ice Does it get any better?
4:49pm I came in and it was dark, and Jake’s eyes were closed. I said, “Is he asleep?” Then this little bald head shook side to side, “no”. Alrighty then
5:02pm Staci and I just performed a routine that Cirque de Soleil would envy I held his head up on the pillow while she slithered out of the bed, then propped him on another pillow. Truly... a work of art Now she is sitting up on the couch like a big girl for the first time in qutie a while
5:04pm Nurse Kristin BACK in... can’t figure out why his line is occluded and the alarm keeps going off. I warned her if she wakes him up, SHE has to climb in bed with him. Not that any of us don’t LOVE lying with him, but after awhile, your arm goes numb, then your leg, then you get a hip pointer from the comfort mattress provided
5:30pm Jake still asleep... Dad too... in the parent room. Staci and Mo watching “How to Lose a Guy in 10 Days.”

This is where many may have left off earlier....
6:28pm Jake stirred a little, first time in an hour and said, “mom I want you She moved to the bed, and he seemed to go back to sleep.
6:35pm We have eyeballs
6:47pm Jake slipped his little hand up mom’s sleeve and I tried to sneak a picture. When the flash went off, he said, “MO, it’s too brighten.” That is something he says often... he does NOT like the lights on I want to tell the person who requested it, I got the shot I will try to get it on the website as soon as I can. Within minutes, I hear, “poopoo head ” Whoa, mister His voice is about all he has to “play” with He is so cute.
6:48pm All of the sudden, he starts screaming with hand pain I go over to try and rub it and use a terrycloth rag to massage it. Nothing working, so Staci called the nurse for pain meds.
6:50pm Tried changing positions fore distraction from the pain. He settled into a reclinere on his Aunt Mo’s lap, but only for about 30 seconds Then, I hear, “Mom, I need you.” Soooooooooo, we all switch spots again, and he is comfortably on mom’s lap now. Dad is still in the parent room and should be good and ready for the night shift
7:03pm Scooby back on. Tried to turn on a light, but again, “too brighten”.
7:06pm “I gonna be sick ” The bucket is secured, Staci sits him up in a perfect upchuck position, and we wait.. False alarm.
7:07pm Nope, here it is Poor kid, he is throwing up his NG feeds.
7:08pm Oops, round 2, an Mo is in the hall showing hte nurse the first batch so she can get a measurement of it. This one ends up all over Jake and mom.
7:09pm I hear Jake laughing at Scooby again, as me, Staci, and Nurse Kristin are untangling all the cords to try and get his tee shirt off. Dad has to be awakened to bring in a clean tee shirt. I cannot believe he is already laughing.
7:10pm Nurse in with a “comfort bath”... this is a bag of warm wipes. Jake seems to like them. This is only type of bath in months I see his toys at the Target House in a little basket and wish he could still play with them. He liked playing in the tub.
7:13pm Clothes changed, kid clean... I asked Nurse Kristin if she would mind giving Staci a little “comfort bath” too. She passed Jake is now in his red St. Jude HOPE shirt.
7:20pm Jake hiding under the covers as he gets one of his favorite visitors.... Uncle Todd Jake put Todd’s cap on and put his new sunglasses on the top of the cap, just like Uncle Todd wears his. I took some really, really cute pics of this. He was particularly smiley, because he was really happy to see his unc.
7:41pm Crying again with hand pain. He wants something on them, so we grabbed some lotion and hoped the placebo effect would help. I can hear him breathing again. He is in the recliner in his mom’s lap. Now, we are watching Kicking and Screaming again per Jake’s request to watch the soccer movie. He asked mom, “Do I have a soccer ball at my house?” I sure hope he gets to go home and play one
7:48pm Don on his way down to the laundry room to clean the clothes. Too bad Jin is not here... she does it for them. I am Jake’s playmate, NOT the laundry girl. Just ask my husband (Yesssss, I would if I HAD to )
More to come Mo

Picking up where I left off:
8:00pm Jake asking to play with his pretend cell phone. It is about hte only thing his little weak hands can operate.
8:02pm CNA in to check vitals. Right on the money... 8:00am and 8:00pm! I had the honor of helping zero out the scale with my weight both this morning and tonight. I Just love any opportunity to hold him!
8:04pm The night nurse, Philisa, came in to change the pumps, (“if you know what I mean...” bada bing!) She decided to pass on mouth care because of his nausea earlier. She gave him his Neurontin which will hopefully help with the nerve pain. He got Zantac for helping settle his stomach. He also got hydrocortisone. He had LOTS of residual from his feeds. The “food” goes in through his nose, then the nurse sees if she can draw out some. Well, tonight, there was lots, so that means his stomach is not absorbing the “food”. That needs to improve! Hint hint.
8:06pm Aunt Starr and Uncle Gale (Don’s surrogate family) were cruising through Memphis and stopped in for a visit. Of course, Jake had to “hide”... guess where! He seemed a little shocked at WHO was here... I don’t think he was expecting them at all! They had a little shopping spree at the St. Jude gift shop. The fall colors of St. Jude polos (Tommy Hilfiger brand) are on sale for $15.00. Check into this at the online St. Jude gift shop!
8:08pm Respiratory therapist in to listen to Jake’s lungs and check his respiratory rate. His breathing has seemed easier today, and his rate is down from the 50's to 42. Yeeeeesssss! (Say in the tone of Napoleon Dynamite! My big nephews would appreciate me for that one.) She said his lungs sound clear.
8:15pm Jkae just asked fo rcomputer games to play. Oh yeah... let’s give that boy some choices.
8:16pm I am about to polish off a box of Twizzlers. Just thought I would add that for the sake of general interest! Interested?!
8:25pm It is loud and crazy in here. Lots of conversations going on at once. It is kinda “normal” and a nice change. Jake doesn’t seem to mind it. Aunt Starr and Gale are talking to Don. Staci and Todd are chitty chatting. And the movie is blaring in the background.
9:00pm Sorry, I have been on hiatus. I took Starr on a tour of th hospital, and we were on a coke run. We ran into Gregory Allen and his family downstairs, and he looks great. He is an “ex” cancer kid who has whipped it. We are so proud of him... He is also a homeboy from Monroe. When we walked in, Jake announced he wanted to “pick a movie”. He chose SpongeBob AGAIN! Oh joy! Of course, when we were coming in, he had to hide again. I decided to touch him on the legs with the cold coke. He peeked out and gave me a look that said, “NOT cool!”
9:20pm “Todd, find me.” He was hiding under Todd’s cap, pulling it down over his eyes and thinking he was invisible apparently.
9:22pm Todd is sitting beside Staci and Jake in a wooden chair. He is leaning over by Jake, and Jake is grabbing his hat and teasing him. He also slipped his hand up his sleeve. That is LOVE!
9:26pm I gave Jake a little sip of Diet Coke... ok, Debbie Earl or Cheryl, answer this one. Why would it be ok for Jake to have water or apple juice but not a sip of diet coke? I was thinking along the lines of “thin liquids”, but is there something else that makes these different? He was asking for coke, and I gave it to him. Please tell me why I shouldn’t have. He then asked for his “lipstick”. That boy always has loved fruity chapsticks. He likes me to kiss him so I can guess the flavor. Don’t you think it sounds like he has had a great day today?
9:28pm Don seems to really be enjoying the company of his “relatives”. He is sitting on the couch with them, and they are having some good conversation. Staci is picking a booger off Jake’s NG tube. (I told her I was going to type it if she did it!) That is just SICK! She claims it “is going to block his airway.” What-ev-er!
9:40pm Jake has requested Big Mama’s House on DVD. Can you believe that?
9:43pm Philisa back in to change his oxygen sat monitor on his big toe. The beeping is about to drive us all crazy, so I went to the nurse’s station to request an investigation. Apparently, it needs replacing.
9:44pm Ok, Big Mama’s House is now off, and it is back to SpongeBob! That didn’t take long. He just said, “I got teetee.” Don moved him to the bed form the chair, and Staci took that golden opportunity to make a mad dash to the potty.
9:45pm Once finished with the change, he and dad threw the diaper at Uncle Todd to totally gross him out. Aunt Starr and Uncle Gale are checking out Jake’s scrapbooks.
9:47pm Jake just requested to sit in Uncle Todd’s lap in the chair.
9:55pm Philisa bcak in wiht Jake’s Ambizone (anti fungal) and Reglan to hopefully get his stomach motility going (prayer request!) HE is still lovin his Uncle Todd’s lap. I think he actually likes all the noise and busy-ness in the room. It has been quite a while for anything like this for him.
10:00pm Staci just made an escape. She got to leave the room, and is thoroughly taking advantage of it.
10:15pm Don said he went down to check on the clothes, and someone had put them into the dryer with a dryer sheet. He said, “Let’s give em a little time, and they might come back with them ironed and hung.”
10:16pm Jake requested dad pull up a chair and sit beside him and Todd.
10:22pm Todd, Jake and Dad are still snuggly together and Jake and Todd have hardly moved.
10:23pm “Dad, I can’t hear it.” I guess he is tired of all the activity now. Especially if it starts to interfere with his hearing SpongeBob.
10:28pm Me, Staci ,and Starr stripped the bed cause it needs a changin’.
10:30pm Two CNA’s came in to make a new clean bed for ake and his mom or dad tonight. They were so nice... they are really good at what they do. They assist the nurses, and are always so pleasant.
10:35pm “Mom, where are you going?” He is like a hawk. He knows everyones move at all times.
10:38pm Aha, we knew it was a matter of time. He just realized his buddies have been moved. Staci talked to him a little about it, and he said, “Put them back”.
10:41pm A small move... but with all the cords there are no EASY moves... he moves to Todd’s right arm!
10:48pm Someone from the second floor actually just delivered their clothes to them dried and folded. Is that amazing or what? I may need to move in for awhile.
10:55pm Jake is asleep at last. Still in Todd’s arms. They are both perfectly content with each other! And we continue to watch SpongeBob because he is almost to the part where he is promoted to manager of the Krusty Krab! Anyone seen that episode?
11:40pm Don just decided to go get something to eat. There is nothing here to choose from... the cafeteria is closed. Wendy’s is just around the corner. I talked Staci into going too. She looked at me and said, “Are we crazy?” I said, you can do it... you can be back in 15 minutes. So they are gone. If you are on the road between St. Jude and Wendy’s... God be with you! Staci is a nervous wreck!
11:50pm Jake is sleeping soundly on Todd’s lap in the chair.
11:57pm Nurse Philisa is back in to give Jake his Methadone. All is well in Judeville. Mo

Wednesday, July 5, 2006 5:33 PM CDT

Look all the way down, I have now added the day’s activities through almost 8:00pm Keep checking the BOTTOM of the page, because I am just going to add to it through the night.

I thought I would keep up with the day and share it with you...
7:30am I am awake and moving Jake from the bed to the chair in his dad’s lap. He always has specific requests, like now, “I want to sit on my pillow.” This is after a bout of “I can’t get comfable.” Jake had a pretty good laugh at Dad’s hairdo this morning. Don slicked it on back (and up) and said, “I am Jimmy Neutron ” Jake thought that was pretty funny.
7:50am Moving Jake back to the bed. He wears out sometimes kinda quickly when he is in the upright position. Me, Dad, and Jake are watching Hitch. Jake laughs when the big dude starts trying to dance. WE are all laughing with him, since it is such a sweet sound.




8:00am Nursing asst. in to check his vitals and get his weight. Mo has to stand on the scale and zero it out before I hold Jake to get his weight, subtracting my LARGE number Bless his patient little self. Dad says, “Don’t you give Mo a hug.” And Jake squeezes me tight. He is so warm and perfect. I get some sugars on his little neck I still just LOVE his bald head. Oh, by the way, we are feeling a little stubble lately




8:15am “Dad, I want to get back in the chair.” “Mo, get me my computer.” Still watching
Hitch.
8:30am “Dad, I have poopoo.” Mo has to move ol’ boy to the bed to change him. I pretend to forget to put his diaper back on , so he starts laughing, and saying, “Dad, look what Mo did. She is going to put me on my pillow with my booty.” We play a minute with plastic glove. Not as much fun for him as I thought it would be
8:40am While I am up, I go down to the nutrition room and get some ice for my morning Diet Coke, and I pair it with a brownie Delicious and Nutritious
8:45am Doctor in to listen to Jake’s lungs. Jake never looked up from his computer. He is playing Tonka Trucks, Blue’s Clues, and Pirate Poppers.
8:50am “I gonna be sick.” I run for a bucket, and up comes some of that nasty formula that is going in his NG tube. It stinks Staci is getting a little rest, and is asleep in the parent room. Don is so uncomfortable and hot, but he doesn’t dare move When Jake finally finds a comfy spot, nobody moves a muscle. I wish I could make Don feel better. I can hear Jake brething from across the room. Oh, and Hitch just went off, so we have to find something else
9:00am Nurse in to deliver meds and bring in mouth care. This is what made Jake throw up yesterday, (we think), so I am not sure if this is a good idea. Jake asks to get back in the bed. He is so patient when the nurses do their thing. Bless his little heart. Dad is surfing the tube. Nurse just squirts Jake’s meds accidentally on Don. Yuck Jake’s cough seems to be getting a little stronger. That is a good thing, that he can clear his airway or lungs when they get junky. It also means he is a little stronger in his abs to force the air out.

9:05am “Mo, I have teetee.” We change his diaper, and dad makes a beeline for the bathroom. Jake says, “Mo, let’s hide.” Have you noticed his sentences are really short. His breath support won’t all ow much more. We hide under a pillow fort, and he giggles like it is a brand new game when dad finds him.
9:10am I almost won the grand prize getting to lie with Jake. But, he changed his mind, and dad is back in bed with him. Poor Don... Lying on the same side hour after
hour in a cramped little bed. His hip is killing him Hopefully, Jake can get
comfortable and rest a while. I cannot believe that Jerry Springer is on TV
Actually, he is just hosting a show on E
9:20am The nurse is back in to see why Jake’s sats are falling. His alarm went off. She finds that his nasal cannula has come out of his nose, and when she listens to him with her stethoscope, she finds he is “grunting a little”. She supposes this is due to working harder to get breath since the O2 support of the cannula was lost. Withing minutes, he is leveled back out, and his sats are 100 percent. I can still hear him breathing though. Poor little guy. Breath should not be that hard to get The nurse also gives Jake his mouth care with a swab and some nasty meds. He does it without a bit of complaint.
9:55am Jake, Dad, and Mom are all asleep. So, I am going to take this opportunity to head to the Target House so at least one of us can be clean I will start back on this when I get back. The nurse’s aide just came in to do her stuff, and bless her heart, she decided to let him sleep. That is a rarity She did get the chart where we are keeping up with anything he deposits in his diaper. They decided not to put Jkae on fluids when they stopped the TPN, so they are making sure he is urinating appropriately. By the way,it was a rough night again. Staci asked for Ativan at about 1:45am, and that REALLY, really helped him rest. Oops, Dad is awake and searching the tube again... pray for his left hip Mo
1:25pm I am back.. I made a little lengthy trip but got much accomplished I bathed, ate lunch, bought lunch for the two adults present and bought some new scrapbook paper. I have all my scrapbook stuff here with me. I am determined to use this time to catch up Jake’s scrapbooks. I am quite behind. I hope to incorporate some of the journal entries in with the pics (have I mentioned over 15,000? ?) which have been taken since his diagnosis in 2004.
1:35pm Jake is now in his Tumbleforms chair... a fully supportive chair that he can sit in all alone. When I walked in, he said, “Mom, let’s show Mo.” The new toy he got from Brady yesterday is now charged and ready for action. Jake has figured out how to operate the little remote control car, and we had fun “tricking” the nurses by letting it race out the open door to his room. Jake has just asked for all his computer, so now I am right beside him, both of us with laptops in our laps He is playing “school”, so Jin you would be so proud of his choice for academics over adventure games Mom came in with her camera, and we “hid” behind our computers. With her standing above us, I am quite sure these will be cute pictures.
1:50pm Jake is back in bed. He had enough. He is worn out from that little bit of activity. I offered to put a movie in his computer for him, but he said, no. In fact, I just got
another order just came in to lower the head of his bed. I then had to create a nest for Staci beside him with pillows so she could have her head up while his is down
so she can function in a moderately upright position. The room, by the way , must
be around 80 degrees as Jake is constantly cold. Maybe that is a by product of
healing Mo
2:00pm Feet hurting... mom now rubbing Staci is making fun of me because I won’t get
up and immediately follow her commands because, as she puts it, “Mo can’t get up
because she has to type those words. She can’t get up or she may miss something we do today ” She makes fun, but aren’t you liking the variety?
2:03pm Nurse in, telling Jake how cute he is... I put a bunch of A-dorable pictures of him on the door out in the hall so all can know how Jake looks when he is feeling good and strong, AND how he will soon look again. Nurse says his lungs sound good. And... finally, Don is back from his marathon trip down to the vending machine ( the only one is on the first floor). I am putting that in my suggestion box for St. Jude... put vending machines on all floors Ja
2:07pm Jake is now reading my book on scrapbook ideas. And they made fun of me for buying it. Phone call... Staci answered it... I am just writing this to get on her nerves It is Jin... Surprise I just talked her into staying until Sunday. She was going to ride back from her fun week at the beach with her friends. She went for her birthday. She was a little worried about Jake... good ol’ Mo was responsible for that Sorry, Jin... just a kneejerk reaction, I suppose.
2:15pm Nurse Kristin is back in to clear his pumps. We are now having a little laugh at an off-color remark I made about Don and Staci and more clearing of pumps... sorry I am asking for a miracle, so I will try and refrain Staci is changing another teetee diaper. He always knows when he needs changing and announces it immediately.
2:20pm Staci is now doing a dressing change. These just never seem to get OK with him. He has already requestedx Dad to the other side of the bed to hold his other hand. He just announced, “GO ” He is so funny. He fisted his hand and pumped it, like the official start of a race. His other hand is in heavy exploration somewhere I won’t mention. Ok, all done, must’ve been just a quick scope of the region
2:33pm Jake just heard the theme song to SpongeBob in the background and said, “Ahhh, Mom ” The two of them started shimmying and shaking to the tune. Mom headed to the bathroom, and when she came back, we built a pillow fort to “suprise” her. We are all well-trained to hunt all over the room, pretend to sit on top of him, and so forth and so forth....
2:25pm Nurse Kristin back in to do a flush and start Vancolmycin. She also had to answer MO’s barrage of questions as to WHY he is still on this I am happy to announce she gave a suitable answer Oh, by the way... Staci said, “Tell them I am now having a heat flash ”

2:42pm Don is now the person of choice to move to bed duty. He first went to the bathroom, and again came out to a “hiding” Jake. He had two small toothbrushes
stuck up his nose when Jake pulled back the cover to surprise him. Needless to say,
those are now in the trash Ok, and now there is some “funny” burping amusement going on. Gross
2:45pm Change of plans... now Staci is back in the bed.
2:46pm Nothing to report, so I will take this opportunity to tell you that Monday’s AFP came back at 7700. NOT good It has not been that high since before brain surgery. Wherever those stupid tumors are, they are growing fast. We need them GONE.
2:48pm Guess what... another change Now it is dad who is being summoned to the bed
3:00pm Still just chillin’; watching Jimmy Neutron in bed with dad. Staci is on the computer and I am on the couch, observing it all
3:28pm Wow.. Almost 30 minutes with no interruption. Now, Jake is “uncomfable”, so we are trying to regroup. Staci...back to the bed Nurse Kristin is in with Reglan for Jake’s stomach. The nurse practitioner, Sandy, who took care of Jake for a year and a half just came in to visit. That was very thoughtful of her. Once Jake is off their service (solid tumor) and onto another one (bone marrow team), you really don’t see the old team much anymore. She went out of her way to come visit
3:48pm Jake is complaining of pain in his hands. He just squeezes them and says, “Ooooh, they hurt.” Staci called the nurse in. She thinks it is neuropathic pain related to a side effect of a med. He has a tendency to get the same problem in his feet.
4:05pm Discussion with a “fill-in” nurse over whether or not Jake needs morphine. She had to call down to Kristin who is on lunch break, to see what is used for pain. Jake hasn’t had morphine since ICU, and he seemed to have an itching outbreak. Staci decided to have them just hod off since his complaints seem to be slowing down.
4:08pm Nurse kristin in to give tachrolumis (whoa on that spelling ). This is a suppressant to the new bone marrow. He is also still on a steroid, also to suppress. Staci had some questions about all this “suppression” since we need all hands on deck to fight cancer. She said they are both used prophylactically since he had a recent bout with skin GVH and there was a possibility of liver GVHD. He has had good blood pressures today, and Kristin seems to think he is breathing better.
4:11pm Time for mouthcare again. Kristin gave Jake the choice of whether he wanted to do this or not, and bless his sweet little heart, he opened his mouth so weakly, and in she went. He handled it like a pro.
4:18pm Now we sit here in the dark. Jake does not like any lights on, so no one else gets to
see anything but a little light from behind the blinds or the TV or the glare from the computer This is ALL the time
4:21pm Jake is really, really weak. He is trying to play with me. He mimicked my sticking out my tongue and I pretended to “steal” it. Then, he tried to raspberry me with his little tongue, but couldn’t really get any noise out. He is so cute for even trying.
The nurse came back in to give answers for the suppressant drugs too. Jake will start having his methylpred (steroid) weaned tomorrow morning by 25 percent a dose. Well, good Now we need to pray that he has no bouts of GVHD while this is occurring.
4:33pm I went over to the bed to initiate a little play with Jake. This is about the extent of our play, but he giggled, so it was successful. I would pull the covers from the foot of the bed, so they slid down form his chest to off his feet. He would laugh the whole time, kinda his sly little mischievous laugh I surely have missed that He and mom are looking at my slideshow of pics on the computer screen that is my screensaver. I can’t tell if Jake is happy to see the pics or sad. Once before, when he hadn’t been home in a long time, I remember him getting teary when I talked to him about memories of home and showed him pictures. He was kinda somber as we looked today. He has had such a full and happy little life. I can tell by looking at those pics He is a much loved kiddo
4:34pm “I got poopoo”... And Mo won the lottery In fact, it was only teetee, and again, I “forgot” to put his diaper back on . He thinks that is just hysterical. Staci...not so much. She is in bed with him, and said, “Get it on him before he pees in the bed ” OK, ok
4:37pm I just scanned the website, and wow... thanks for the lesson on number seven I am not even kidding, that has always been my favorite and “lucky” number too It is always my preferred softball number and if we are ever playing “guess a number 1-10, guess seven
4:40pm
4:40pm That was for my Aunt Bonnie, who wears TWO wristwatches Ha Ha I walked down to see our old Childlife Specialist, Amy, who reported she will be moving to the 4th floor permanently on Monday, if we are still here. I said, “oh we WILL still be there ” Yeah Jake just loves her. I also made a little trip to the ice machine. Man, I need one of those It has great ice... kinda like Sonic ice Does it get any better?
4:49pm I came in and it was dark, and Jake’s eyes were closed. I said, “Is he asleep?” Then this little bald head shook side to side, “no”. Alrighty then
5:02pm Staci and I just performed a routine that Cirque de Soleil would envy I held his head up on the pillow while she slithered out of the bed, then propped him on another pillow. Truly... a work of art Now she is sitting up on the couch like a big girl for the first time in qutie a while
5:04pm Nurse Kristin BACK in... can’t figure out why his line is occluded and the alarm keeps going off. I warned her if she wakes him up, SHE has to climb in bed with him. Not that any of us don’t LOVE lying with him, but after awhile, your arm goes numb, then your leg, then you get a hip pointer from the comfort mattress provided
5:30pm Jake still asleep... Dad too... in the parent room. Staci and Mo watching “How to Lose a Guy in 10 Days.”

This is where many may have left off earlier....
6:28pm Jake stirred a little, first time in an hour and said, “mom I want you She moved to the bed, and he seemed to go back to sleep.
6:35pm We have eyeballs
6:47pm Jake slipped his little hand up mom’s sleeve and I tried to sneak a picture. When the flash went off, he said, “MO, it’s too brighten.” That is something he says often... he does NOT like the lights on I want to tell the person who requested it, I got the shot I will try to get it on the website as soon as I can. Within minutes, I hear, “poopoo head ” Whoa, mister His voice is about all he has to “play” with He is so cute.
6:48pm All of the sudden, he starts screaming with hand pain I go over to try and rub it and use a terrycloth rag to massage it. Nothing working, so Staci called the nurse for pain meds.
6:50pm Tried changing positions fore distraction from the pain. He settled into a reclinere on his Aunt Mo’s lap, but only for about 30 seconds Then, I hear, “Mom, I need you.” Soooooooooo, we all switch spots again, and he is comfortably on mom’s lap now. Dad is still in the parent room and should be good and ready for the night shift
7:03pm Scooby back on. Tried to turn on a light, but again, “too brighten”.
7:06pm “I gonna be sick ” The bucket is secured, Staci sits him up in a perfect upchuck position, and we wait.. False alarm.
7:07pm Nope, here it is Poor kid, he is throwing up his NG feeds.
7:08pm Oops, round 2, an Mo is in the hall showing hte nurse the first batch so she can get a measurement of it. This one ends up all over Jake and mom.
7:09pm I hear Jake laughing at Scooby again, as me, Staci, and Nurse Kristin are untangling all the cords to try and get his tee shirt off. Dad has to be awakened to bring in a clean tee shirt. I cannot believe he is already laughing.
7:10pm Nurse in with a “comfort bath”... this is a bag of warm wipes. Jake seems to like them. This is only type of bath in months I see his toys at the Target House in a little basket and wish he could still play with them. He liked playing in the tub.
7:13pm Clothes changed, kid clean... I asked Nurse Kristin if she would mind giving Staci a little “comfort bath” too. She passed Jake is now in his red St. Jude HOPE shirt.
7:20pm Jake hiding under the covers as he gets one of his favorite visitors.... Uncle Todd Jake put Todd’s cap on and put his new sunglasses on the top of the cap, just like Uncle Todd wears his. I took some really, really cute pics of this. He was particularly smiley, because he was really happy to see his unc.
7:41pm Crying again with hand pain. He wants something on them, so we grabbed some lotion and hoped the placebo effect would help. I can hear him breathing again. He is in the recliner in his mom’s lap. Now, we are watching Kicking and Screaming again per Jake’s request to watch the soccer movie. He asked mom, “Do I have a soccer ball at my house?” I sure hope he gets to go home and play one
7:48pm Don on his way down to the laundry room to clean the clothes. Too bad Jin is not here... she does it for them. I am Jake’s playmate, NOT the laundry girl. Just ask my husband (Yesssss, I would if I HAD to )

More to come.....Mo

Tuesday, July 4, 2006 10:21 PM CDT

It is EXCITING here!! I think it is an all new episode of COPS on, so Jake is in the zone!! He and dad are rednecking up in the recliner, amazed at some of the busts taking place on tonight's episode!

It was DEFINITELY a better day. Staci and Don say that you just never know.. some days he sleeps all day long, and some days he won't sleep at all. Last night, Don FINALLY asked the nurses to bring Jake something to chill out and sleep. It was 6:10am, to be exact, when jake got some Ativan and Methadone, and minutes later, he was finally snoozing! Boy, he was so restless before that. he was moving from bed to chair, to bed, to chair.... all night long. He would say, "Dad, I can't get comfable. Help me get comfable." He probably has 10 pillows in his bed. As any of you know who have had the privledge of staying in a hospital, the "luxurious" pillows they provide typically have to be doubled (as in TWO in one pillowcase) just to feel a little fluff. He has a definite method to his nesting. He needs a pillow under his bottom, two under his legs, and two to three under his head, depending on the activity at hand. Then, dad has to have two under his head, one (unless lucky enough to get two) between his legs, and one behind his back to prevent sores from the bedrail he is crammed against!

Jake is now tolerating the feedings of his NG tube better, which means he is absorbing more, so he is now free of one more line...no TPN! Yippee... one less to handle during moves! His breathing is still a little shallow and loud. I try to keep up with him sometime and time my breaths with his... haven't we all done that...with a husband, a child, or a dog (Holly?!)...anyway, when I try to breathe as fast as he does, I absolutely cannot feel like I am getting enough air. I can't do it even a minute.

Jake sat up in his little chair provided by therapy for about 15 minutes today. He may have lasted longer if his computer illiterate aunt could have figured out how to install his game a little sooner, leaving him less impatient. He and I threw a small football, and he thought it was so funny to throw it at me when I wasn't looking. Of course, I was a little melodramatic in my response, like he had broken my arm with the force of his throw! He is so cute trying to giggle. He even smiled for me for a few pics. his cheeks are SO, SO swollen from the steroids. He has little chipmunk cheeks when he grins. He was especially smiley when he opened a present from Ram Foster and his family. They gave Jake an autographed football from the second best high school in our hometown. The entire Ouachita football team signed the ball. He thought that was so cool. (Go ahead, bring it on, Eddie and Bonnie!) There was also a pair of sunglasses, and he wore his on top of his forehead like I happened to have mine at the time. He gave me a peace sign, a thumbs up, and a big smile. Maybe we can figure out how to get these on the site.

Angela Rangel and family, thanks for the sup-sup. I missed the supper last night, but I was surely in time for the brownies... oh my Lord! Those are AWESOME! Tonight, we ate high on the hog when Cole Hardy's mom and dad brought us Spaghetti Warehouse. Man, that was a treat. I know Staci and Don appreciated a little company too. AMie and Allen Smith came by to visit and brought Jake a goodie from Chuck E. Cheese. Angel Stacey, Jake finally started opening a few of his gifts that had piled up, so he opened his Incredibles book, and we did a little sticker placement, which was really good PT/OT! He also opened a couple of DVDs from Mishka, and lo and behold, he didn't have EITHER one of those... that is a small miracle! We have already watched ol' Spongebob and Scooby. He has really been fond of Scoob lately. Pierces, thanks for the Mater (like Tomatoe without the "toe")toy and tee shirt. Lastly, Brady and family, from Louisiana, sent up a cool remote control car that we plan to play with tomorrow. It requires one of those tiny screwdrivers to open it, and we plan to contact our ol' buddy in childlife, Amy, to snag her tools!

I guess there are some specific prayer requests we need to address....
1. Let's just get right on complete healing on this earth! In fact, how bout a "well, we don't know WHAT we were seeing in those scans, because there is nothing there now!" All along, we have asked for a miracle that defies anything a doctor could claim so Jake could have a testimony of a miracle FOR SHO! Well, I am claiming that is what we are seeing.
2. Jake's breathing really, really needs to get better. We need his lungs to clear up so that is not stressing his breathing, and for his liver and spleen, which are both double their normal size, to shrink so they will not be blocking his lungs from expanding to get better air.
3. Jake to come off the meds with increasing restfulness and ease. Detoxing is NO FUN... not even to watch, so I cannot even imagine what Jake is feeling!
4. Smooth conversation with the surgeon and the oncologist for them to come to a good conclusion, one that will give Jake a long life!
5. General patience and peace for the mom and dad in this scenario. Patience can be slim when Jake is fussy, uncomfortable and crying for everyone to be right beside him at all times. This includes just standing there because that is what he wants you to do! (Last night, I made runs to the nurse's station to request a "warm blanket" from the warmer, and later a baby blanket to wrap on his head because he was cold.) Whatever makes his "comfable"!
6. He seems to have a little more solid stools, which I just have to think is a good thing. Pray that the discontinuation of the TPN and full feeds via the NG tube goes smoothly. This means no throwing up (he is doing this about once a day presently), a growing boy, and his electrolytes need to stay stable! Jake has been on TPN to help control his electrolytes (sodium, potassium, magnesium, etc.)since he had all the trouble with soduim level after the first brain surgery in March or April... it is a shame, but we really lose track! Just living out today!
and #7. I wanted to make it to seven because that is Biblical per one of our Believers... I think that is cool, and need to learn more about it. I know it involves Jericho! Uncle Carey (my Sunday School teacher), we need a recap! Finally, that Jake will gain strength, physically and mentally. He is showing more of his personality by the day, although he has a long way to go. He sat up a little more than usual today, and we are going to go for longer tomorrow. He has been trying to "shake" a little to his familiar songs, when he sees mom and Mo dancing like fools. He has the weakest little hands. He tries to push buttons on a play cell phone or use the mouse on his laptop, but sometimes, is just too weak. He lies the majority of the day. So that rounds out our list!

Can't wait to see how much better he will be tomorrow. Please, just continue to bind with us for Jake's healing. We do not like to put too much stock in an AFP, but truthfully, the direction of his entire treatment is directed by it, because the doctors certainly do! SO, just pray for that miracle. This is not too much for God. I mean it and I believe it! HE CAN HEAL JAKE. Remember our 9:45 am and pm prayers? Can we revisit that? That will mean many of us are bound at once to ask for the same thing.

Come on Believers... we are riding that Believer Express right on to Healed-ville!! Mo

Tuesday, July 4, 2006 1:46 AM CDT

Helllllooooooooo to all you night owls.

I sit here bedside at St. Jude with Jake turned on his side so he can watch me. He is in bed with his dad, and his little hand is crammed up his sleeve as far as it can go! He had a pretty good day. I have been wondering what Staci means when I ask if he had a "peppy" day, and she says "yes". Now I know, peppy isn't all that "peppy"! Buuuuutttt...you can see his little spirit trying to break through. He is gaining a little strength, but still can't really sit up alone. He has to be propped up by pillows when he sits wiht mom or dad on the couch. He likes to change position (couch to bed to couch to bed...), which I think is a good sign! He is still wearing a stupid nasal cannula to give him a little oxygen support. He also has an NG tube going from his nose to his stomach to feed him. This is taped across his face and into his nose. His liver and spleen are both VERY enlarged. This pushes up under his diaphragm and doesn't allow his lungs to expand very well. His breaths are shot and shallow, but this same upward pressure causes a "burst" of pressure to push out the breath, so we can hear him breathing across the room. I need to take a minute to say how for granted we take BREATHING! Poor little Jake! He struggles just to breathe. He tries so hard to "have fun", but basically feels pretty miserable. OK, we have now changed again to the chair! Don is doing everything he can to let Staci sleep a little. Jake keeps calling for her. She is in the parent room next door. She told me earlier that she felt like if she ever went to sleep, she may sleep a week. Jake is also complaining of his arms itching. There is not a good reason for this other than his withdrawing from all the meds and being downright irritable, aggrevated, and uneasy!

Dr. Davidoff, the surgeon, came in today and said he can get to all the tumors. However, he wants to talk to Jake's oncologist to see "if this is a necessary surgery." In other words, is the cancer expected to continue to spread despite a resection? IS a resection really going to be a cure? Then, of course, can he survive a surgery of his already very diseased and weak lung? Staci told me they have also talked to them about Jake's breathing potentially worsening if nothing does happen. In this case, will they choose to put him back on the vent even though the cause of the problem was not addressed? Man, do they have some awful decisions to make! But... not yet! As for this very moment, Jake is just going to be loved and held, and comforted.

Jake called JIn tonight, and we sang "Happy Birthday dear Pootihead, Happy Birthday to you." I know there could have been no better gift than for her to hear his weak little voice trying to sing to her. Of course, he would not agree to it, until we "altered" the words a bit! Then he even giggled a little shen he called her. Yep...today is Jin's birthday, and yesterday was Nana's. Happy Birthday to both of you.

Hayden's team is rocking on in sub district... Go, boys, go!! We look forward to both brothers coming back to memphis so everyone can be together again. Well, I will be staying here all week. Pray for little jake's comfort and peace! Pray for wisdom and confidence for Staci and Don. PRay for a renewed mind and body for both of them, but I can tell Staci needs an extra dose right now! She is whipped! Jake is going through a big time Mama's boy phase! That means 24/7 demands on her! Don and I have made it almost an hour now distracting, so maybe pray for us too! OK, now they are back in the bed!! In the past hour, he has made three position changes, and I will honestly tell you, I DO NOT know how they ever do this with just one person! To lie in the bed with him means the rail has to be put up behind the adult. Then, with any changes, someone has to come and let the rail down so they can escape and get up to change a diaper, change a position, or try to make him more comfortable. One person can't reach the lever on the bedrail to let themslves out! Anyway... I feel like I am jsut plain ol' complaining, so I will just end now. It is just quite disheartening to say the least... but we PRAISE THE LORD that Jake made it through the last phase when doctors said he would not! and IN THE NAME OF JESUS, we claim healing and a miracle over Jake's life!

The little nut just hid under his blanket (yes, it is 2:35 am), and said, "Mo, come find me!" He makes my heart swell! Mo

Monday, July 3, 2006 5:08 AM CDT

Quick update - I promise a better one later on today.

Jake is doing OK. He is still a little restless and irritable but I can't blame him. We are doing our best to keep him comfortable and happy. His labs look good but could always improve. He ran a little fever on Sunday morning but it quickly went away.

He is slowly starting to show us that beautiful smile and laugh. Every time Staci leaves the room he has to hide from her and scare her. He pops out from behind the covers and just giggles.

I do believe I heard the sweetest thing ever in my life. I was in the parent room fixing to lay down after swapping with Staci when I overheard Jake on the intercom after Staci laid down with him and it was perfectly quiet, he said, "Mom - I Love You". Needless to say but I cried myself to sleep. As bad as he feels and all that he has gone through he still shows his sweet love and spirit. He is truly Heaven here on Earth.

AFP(tumor marker)was drawn this morning. Please pray that it is much lower. I'm sure it will be a busy day of meetings with the medical team. We will let you know the scoop when we can.

Keep praying.

BELIEVE,
Don

Saturday, July 1, 2006 10:07 AM CDT

Just dropping in to let you know we are still here and still fighting. Jake is struggling a little bit. He is very uneasy and restless. The team is having to give additional meds just to get him easy. He is complaining of his back hurting which could be the largest tumor of the three since it is on the back side. We hope and pray that is not the case. they are giving him morphine for the pain which is always a treat to watch. He just looked at Staci and me and said, "Ya'll need to wake up and play with me."

Jake's primary surgeon will be back on Monday and I'm sure we will discuss options after he looks at Jake's scans. Please pray for a clear solution for everyone. Jake's spleen has also doubled in size for some reason. The team is not sure why and we will monitor it over the next few days.

Jake would like to wish his Uncle Eddie and Aunt Bonnie a Happy Birthday today. He wanted everyone to know that they are way older than his daddy.

Gotta cut this short. Jake wants to sit in chair with me.

BELIEVE,
Don

Thursday, June 29, 2006 2:19 AM CDT

UPDATE Thursday 7:30PM
The scans showed 3 large tumors in his left lung. The brain was stable so that was good news. Jake's case will be presented to the surgery team and see if surgery is a possibilty. His lungs are very weak and surgery would be very dangerous.

Pray.

Don


UPDATE Thursday 12:30PM
Hunter is out of surgery and did great. Jake's scans are complete and now the hard part of waiting for the results is here. Stay tuned.

Don


The move to the 4th floor is complete and Jake is resting. He seem to be a little more comfortable in this room as it looks like all the other rooms that he has been in here at The Jude.

Leaving the ICU and room 3007 was a little "weird" for me. Staci and I experienced just about every range of emotion that is possible for a parent in that room over the last month and it was just a different feeling. Needless to say, i'm excited to move out of ICU and on to Jake's recovery. The staff in the ICU is at the top of the class. These people have dedicated their lives to the care of these kids and to watch them work on Jake over the last month was mind-boggling. They worked their butts off, calmed our fears, answered our questions, laughed and cried with us, and got our Baby Jake on the right track. Thank you ICU staff for everything. We promise to visit soon.

Jake will have a CT Scan of his head, chest and abdomen today at 11:30. Please pray that the scans go well. If they do see something, then let them see everything so we have a clear plan. I will try to post the results as soon as I can.

Hunter's surgery is at 10:30 so please pray for his comfort and peace. Pray that everything goes well. Knowing Hunter he will have the medical team laughing at his every move. Hunter - Bubba and I love you and will be waiting on a phone call to let us know it was a success.

Hayden did good in his practice game and will start his tournament on Saturday. Pray for his safety and the safety of all the players. His mom was there to watch him tonight so I know he was so excited.

A big thanks to Aunt Bonnie, Uncle Chris, Masie and Maggie who are with me while Staci is gone. Bonnie is here with me tonight and has been a huge help. She wanted everyone(especially Uncle Eddie) to know that she got to rub Jake's feet with lotion while he fell asleep. Uncle Chris washed all of our clothes and they help with the move from ICU to the 4th floor.

Another thank you to the Rangel Family from Cordova who brought us a great home cooked dinner with some awesome brownies. They bought Jake some presents and their daughters colored Jake some cards.

It blows my mind away how many people love Jake. It is truly amazing that one little 4 year old boy could bring thousands of people together. He is a true angel sent from God and I'm so lucky to be his father.

Big day for our family. Lots of prayers needed but I know you Believers are ready for it. I will keep you posted.

Believing,
Don

Wednesday night... just home from Hayden's game!!

Want to see a recent pic of Jake? Check the "View Photos" seciton. This is Off the vent, on lots of meds, and in good ol' mama's arms!!

This will be our last update from the ICU. We are offically moving to the 4th floor tomorrow. YEAH!! How about them apples??? Thanks to all the wonderful nurses and doctors here on the 3rd floor, you all took such good care of us. Jake continues to gain strength. Today, he mostly wanted to sit in the chair with me or Don holding him and tonight he even sat by himself in a foam type chair that PT left for him. He seemed to enjoy it. His ANC has climbed up to 3800, but reality has come back to bite us. We do live in the CANCER WORLD and Jake is not yet cancer free. His AFP(tumor marker) has jumped quite a bit. It is now up over 5000. This needs to be a focus of prayers. I'm sure in the next week we will be having scans to see if we can locate the beast. Until then I will keep you posted and pray for no more cancer!

I also need your prayers. If my feet and heart will allow, I plan on driving home tomorrow. This is so hard to do, but Hunter is having surgery on his mouth thursday and wants his mom to be there. Who wouldn't? Hayden will have a practice game on wednesday that I will for sure make. His first game is on saturday. I would love to stay for that, but just not sure I can stay away that long. I am playing it all by ear. Bonnie(Don's sister) has agreed to stay at the hospital with Don. Thanks Bonnie it is a big relief for me to know that Don will have some help.

As far as Jake's spirits, he has watched Monster's Inc. 3 times today and I left the room a little while ago and the nurse ran out to get me. She said Don needed me. I quickly ran back in to find Jake hiding under a pillow. When I walked through the door, he very quietly said BOO!! He even cracked a smile. The first we have seen in quite a while. It was beautiful to see and Don and I both just cried. I have missed his sweet demeanor. He is so funny and always has us laughing. I can't wait for that to come back to us.

They have him completely off his pain med Fentonal(sp?) and are continuing to ween down his sedation med Versaid(sp?). This is the one we are having withdrawls from so it must go slowly.

I went by the Target house tonight. First time in months. I was blown away by all the packages. Jake is going to throw a fit when he sees all of them. It took all I had not to open them myself, but I will wait on the little man to help with the unvailing. Thank you all so much. This will make his year. Christmas in July!

Dawn, Todd, and Mason thank you so much for dinner. It of course was fabulous. I would not have expected anything less from Mr. Todd. Dawn as always I just loved your company and Mason well I love your sugar and hugs. You all are so awesome and mean the world to us.

I'm off to finish packing. You can only imagine the stuff we have collected during our stay. It will all have to be moved tomorrow. A few prayer request: As Mel mentioned, BillyPaul earned his angel wings today. He was a solider of God and a true delight to have known( visit/billypaul). Christopher Reeves a young hero here in the ICU recieved some bad news today. I will have to check and see if they have a site to visit. They could use some words of encougement. Marcus, our neighbor at the Target house and now our neighbor in the ICU has had a rough time lately.His mom Michelle has been by his side through it all. She is one strong lady. I don't know how she does it all by herself visit/marcuspinsanor).

As always pray for Jake's lungs to continue to heal and for his body to rid itself of this beast. Jake's complete healing here on earth.

BELIEVE,
Staci

Tuesday, June 27, 2006 9:01 AM CDT

For someone always FULL of words, I don't have too many today!! SOrry!

Since I am not in Memphis, I have to call for any information. I, like you, check every morning, first thing, to see if there are any changes or things I need to pray about. This is what I understand to be going on right now.

Jake's ANC (immunity) is up to 1800!!! PRaise the LORD, Praise the LORD, Praise the LORD! If you recall, it had been 0 for over two months. In fact, no immunity is what allowed that stupid fungus to settle in Jake's lines, his lungs, and eventually his bloodstream. Now, he has a little something to fight with!! This makes me think of a story Karl was telling me about Jehoshaphat (in 2 Chronicles 20) where he was afraid to go into a big battle because the odds against him were overwhelming. The LORD said, "Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's." They were told to sing praises to the LORD, and "have faith in the Lord your God and you will be upheld; have faith in his prophets and you will be successful." As a matter of fact, when Jehoshaphat and his men topped a hill, they found only corpses, as the other armies had turned on themselves, and were all killed. The men were singing, "Give thanks to the LORD, for his love endures forever." I think about that, because just their singing and obeying saved their lives. Jake has also been upheld, and I believe it is because of the prayers and praise given by His people. Now, he has a battle of another type. He is extremely weak. Mom says he is like a newborn. He can't even hold his head up. Don told me he looks like he is getting frustrated at times because he seems to want to sit up in bed, but doesn't have the strength to do so. I had been concerned mostly because I heard when they put on one of his favorite movies, he would just lie in the bed, looking away; not even interested enough to look toward the TV. Don made me feel a little better yesterday when he said he gave Jake a choice of videos, and he picked Scooby Doo. I try to remember that he was on the brink of losing his life a couple of weeks ago. I can only imagine that you are a little "out of sorts" coming back from something like that! And as for strength, I know that will come. I happen to know some of the BEST pediatric therapists in the world! (In case you don't know, I own a pediatric therapy clinic!) The speech therapist came by yesterday to do a swallowing assessment. Jake took a few sips of water, so that is the first thing that has passed his lips in over a month. Bless his little heart.

He is having withdrawals from the mounds and mounds of sedation meds he had while on the vent. He is now on Methadone to help with the withdrawals. Don says he wakes up irritable and picking on everything. Ugh! He was picking on the tape of his new buddies, and Jin said, "Baby, those are just your buddies." He scrunched up his face and said, "NO". You can't pull the wool over his eyes!! He KNOWS something happened while he was "asleep". His buddies are now more over toward his left arm. He ain't no dummy! His "old" buddies had been a part of his body schema for the past two years!

I am also told that there is no sign of GVHD at the present time. Praise God! His skin inflammation has responded well to the creams provided. That is a praise in itself, as some kids are not so lucky! Thank you, LORD, for giving the docs the creams that work for Jake.

Let me take a moment to tell you how unbelievably overwhelmed I was by the support for Jake at his spaghetti lunch. First, Cindy and Tracey, how can words express how grateful we are to your organizing and planning? Many don't know the HOURS that went into organizing the deliveries, setting up the spaghetti cookers, etc. You are such good friends,and we could just never properly thank you! Bonnie, Eddie, Marina, and Chris, thanks for keeping the north side "cooking in grease!" When I came by, it was busy, busy, busy. And to all the teachers, friends, and volunteers in West Monroe, thank you for spending your Friday helping Staci, Don, and family. Lastly, thank you to everyone who cooked the spaghetti (197 large pans) and to everyone who ATE it... Staci and Don will not have to worry about expenses in for many months. That is such a blessing. A huge burden that has been lifted so they can just sit tight and watch Jake get better, with that being their single focus!

I believe Aunt Bonnie and family are heading to Memphis today. I know they will be glad to have a visitor and just a few new faces! I hope Maggie, Jake's 4 year old cousin, will cheer Jake up. I don't think he has smiled yet, and I for one, cannot WAIT until I hear that report. Hunter has dental surgery scheduled for Friday. Hayden's first all star game is Saturday... so Jin is heading back, probably tomorrow, and I think Staci may be doing some mental gymnastics to figure out how she could be here for both of them too. Aunt Bonnie will be there to take her shift, so Staci, it will be FINE!

May I direct you to the website of a true hero?! Our friend, Billy Paul, passed away last night. He was a really cool kid!! I don't think I have ever met anyone like him! He was so gentle and loving. His treatment left him small for his age, but he had a giant's heart! He prayed for all his friends at St. Jude, even after he had gone home on hospice. Read back over a few of his mom's journal entries, and you will see what a special kid he was!! Now, he lives with Jesus. Praise the LORD!
www.caringbridge.org/visit/billypaul

Well, this should teach them to leave us a day without an update!! Dontcha think?

hey, Don... get ready... I am coming back next week!!! MO

Sunday, June 25, 2006 8:41 PM CDT

Another praise: ANC 500! Wooo Hooo! Jake has been somewhat agitated today, perhaps from Verced withdrawal. He has been given Methadone to help with that…go figure. Staci and Don have been taking turns sleeping (not necessarily always sleeping!) in the bed with Jake and holding him in the recliner. He sure rests better when they are next to him. I forgot to mention something very important - - Jake called my name last Friday and has said it every day since! Music to my ears. Today, however, he was calling my name to help him because he did not like the nurse reinserting a new NG tube in his nose. That’s when I lost it because I couldn’t do anything. I simply held his hand and tried to talk softly to calm him. I don’t like that baby to be upset!! His voice is still very soft and we have trouble understanding what he says. But he’s improving in every way, every day. Hallelujah!

We had more visitors today. Eddie and Stacie Enlow from Monroe stopped by on a return trip to Kentucky. They even brought us a delicious cream cheese pound cake.
Karen VanSickle brought us another delicious meal. She is spoiling us, especially with the homemade bread. As good as the food was, your visit with me was even better. Thanks for everything.

We’re working on pictures, but it will be a little later before they are developed. That’s about all that’s going on here. So, keep up the prayers and continue to watch the miracle of Jake Owen Raborn unfold before our eyes.

Jin Jin

Saturday, June 24, 2006 10:16 PM CDT

It’s been a relatively quiet day here in the ICU. Jake has rested comfortably and either Staci or Don has been in the bed with him - - his hand up their sleeves - - just like old times. A huge prayer request is for him to gain strength. This sweet baby is very, very weak. But what else should we expect after being “out” for so long! There’s some talk that we may move to the 4th floor Monday. A big praise: ANC is 300!! Slowly, but surely, Jake’s taking those baby steps.

Don and Staci are still all atwitter (is that a word?) about the success of the chicken spaghetti lunch. Once again, we all want to offer our thanks and appreciation to everyone who organized, cooked, served, delivered, and bought tickets. What a huge effort on everyone's part. There are just no words to truly express our gratitude.

A few more thanks go to:
Veronicia… thanks to you and the children at New Chapel Hill Baptist Church for your special offering on Jake’s behalf. Also, to the Adult 5 Ladies Class at NCH, thanks for your card and donation. We appreciate all the prayers coming from your class and your church.
Mrs. Mary Johnson… you know how much we appreciate you and all you’ve done for us. We were very happy to hear from you again.
Garrison Financial Advisors… thank you for your donation to Jake and our family.
Janet Cummings… thanks for being a Believer and sowing into Jake’s miracle.
Anonymous contributors to Jake’s Medical Fund…we wish there was some way to acknowledge all of you. Just know we are thankful for you.
Sarah Rutenberg… Hunter and Hayden loved their Under Armour socks and caps. We had every intention of them writing their own thank you notes, but with Hunter in Memphis and Hayden back home, I’m afraid the notes would be a long time coming. But anyway, they think they are really cool wearing their new stuff.
Angel Holly… Don really enjoyed the chocolate apple you sent him for Father’s Day. He must have; nobody else even got a taste!
Jo Kaufman… your cookies were a real hit. I have never described cookies as being unique, but they truly are…besides being delicious!
Cheryl Leachman and family… sorry I missed you today, but Don and Staci were very excited to see you and the gifts were wonderful. You were just too sweet to bring such nice things.

Like Don always says, we know we fail to acknowledge every gift and kind gesture. Please, please know they love and enjoy everything that is sent their way.

Jake has the best prayer warriors in the world! Thanks for staying with us and praying us through this next phase in Jake’s total healing here on earth. We love all of you.

Jin Jin

Friday, June 23, 2006 0:59 AM CDT

Just had to make a quick update to let everyone know what I just got through doing. I got to hold my baby. Yes you read right.He and I sat in the chair for about 30 mins. and now Don is taking his turn. I cannot even begin to express the emotions that we have right now. We have been waiting and praying for this day for what seems like an eternity. Well let me just say, it was worth the wait. Thank you all so much for praying this prayer with us. God has answered so many of our prayers. How awesome is he!! We are now praying for strength with each passing day and of course earthly healing. We are thanking God for the miracles we have seen and keep seeing him perform in Jake's life. By the way his white count went up and he had an ANC of 100 today. Just another miracle!! Can you believe the strength this baby has. He is just a walking, talking, breathing, living miracle of God. Thank you Jesus!!!!!!

The spaghetti lunch was a huge success. Thank you all so much. We will never fully be able to express our gratitude. The burden you have lifted off our shoulders is huge. We can now focus completely on Jake's healing. We love you all so much and are just overwhelmed with the generosity you have shown to our family.

Ms. Lynn Savela thank you for supper last night. Mr. Todd cooked us a wonderful home cooked meal. His food is to die for. We even had enough to share with our neighbor. We thank you for staying with us on this jounrey. Who knew that a few Wiggle tickets would turn into such a wonderful friendship.
Thank you Jesus for another wonderful day.
Staci




Just wanted to give you a quick update as Staci and I are both tired from today. Jake has been asleep a good bit of the day due to the sedation he got in surgery. His voice weak but it is the prettiest sound that we'eve ever heard.

Jake has a little oxygen running through a nasal cannula and his oxygen sats look good. They will try to wean him off of that over the next few days. His new buddies are in and working. The femoral line(temporary buddies) should come out in a day or two.

I promise a better update on Friday. Today was a great day in our lives as we have all prayed for this moment. We can't stop now. The Believe Express must press forward.

A big thank you in advance for everyone invloved with the fundraiser on Friday. We pray for everyone's safety involved and hope ya'll have a great time. Wish we could be there.

Believing in the power of prayer,
Don

Thursday, June 22, 2006 5:02 AM CDT

3:15PM UPDATE
Jake's first word - "Mama". Absolutely amazing.

One proud dad,
Don


2:00PM UPDATE
Jake is OFF of the vent. I'm too numb for any other words. What a great day!!!

Believe,
Don




1:00PM Update
Dr. Davidoff(a great surgeon) just came by and Jake's procedure went well. He should be back in his room in about 20 mintues.

Will update soon.

Don


12:30 p.m. UPDATE
Jake is in surgery. He had a lot of attention by a lot of caregivers before he left his room, but Mom and Dad were by his side trying to calm him. We'll update again when we hear from the doctors. Keep the prayers coming.

Jin Jin





Jake has a really big day planned for him so prayer warriors - get ready. Jake will return to the operating room today for the 8th time in his young life to have his "buddies" put back in. It should happen sometime around noon and takes about an hour. Please pray for his safety and guidance for the surgery team. Once he recovers from that then the plan is to take him off of the vent this afternoon. If he has trouble waking up from his "buddies" procedure then coming off of the vent will have to wait until Friday. Either way, we are so excited and happy for Jake. He has fought so hard on the vent and we can't wait for him to come off and tell us about everything.

Jake is really starting to become more alert and realizing everything that is connected to him. He gets upset and we try our best to calm him down. He got real upset around 3:00am and I asked him if he wanted me to go get his Mom and he shook his head yes very urgently. I went and got Staci and as usual she got him to calm down. They are both so amazing to watch together. They have been together everyday for over 2 years in this battle and their bond is beyond words. They are both resting peacefully now as they rest for his big day.

Please pray that this day goes as planned. It will truly be a great day in my life to hear his voice again.

We will try to keep you updated as the day goes along.

BELIEVE,
Don

Wednesday, June 21, 2006 1:57 AM CDT

Another great day with my little soldier. He is doing well and all of his vitals look great. He has a good bit of GVHD of the skin but it seems to be getting a little better. The team has added another cream that seems to help. He is resting peacefully right now. He has been on the vent for 29 days and I'm so ready to hear his voice. We hope and pray that he will be off by the end of the week.

Jake had a very special visitor today. JJ Yeley - driver of the #18 Interstate Batteries Nextel Cup Car came by to visit with Jake. He wore his driver suit(very cool idea) and brought Jake a car and some pictures. Jake's PawPaw went to the Talladega race back in April and met JJ and told him about Jake. PawPaw gave him two of Jake's Believe magnets that now ride inside of JJ's car every week. The visit meant the world to us and even though Jake is still very sedated he was awake enough to recognize him. When he noticed JJ he tried to move over toward him. JJ held Jake's hand and rubbed his head for several minutes. He did not seem in a rush to get out of there and wanted to know about Jake's disease. He said that Jake was his Hero and he would continue to keep in touch. He was so nice and it was such a great lift for us. The newspaper was here and wrote a nice article about JJ's visit. Here is the link if you wold like to read the story - JJ Yeley and Jake's story.

Pray for Jake's strength over the next couple of days. Pray that his "buddies" procedure goes well and that Jake will be taken off the vent. Pray that the marrow will do the job and heal Jake.

Keep Believing,
Don

Tuesday, June 20, 2006 11:18 AM CDT

Reminder: Spaghetti Fund Raiser planning Meeting this evening at Drew Elementary 5:30 PM. Bring any money collected, number of tickets sold, and any deliveries to be made....There is planning to be done.

BELIEVE
Baby Jake's Uncle Eddie

Guess who?? I know I know you haven't heard from me in ages. Don is catching up on some much needed rest and I am on duty, watching my sweet angel sleep. I got a treat just a little while ago. Every since I can remember Jake's security blanket has been him putting his hand up mine or Don's sleeve. He has slept with us since he was born and all through the night he would turn one way and put his hand up Don's sleeve and then turn the other way and do mine. He is so precious. Well he just got real figgity and seemed very aggitated. I got close to him, as if to lay beside him. I thought he was trying to hit me. I soon discovered he wanted my sleeve. He found it and went right to sleep while rubbing my arm. I love that boy. Man, this week cannot go by fast enough. His line will be put in on Thurs. and off the vent either later that day or Fri. Either way by the weekend, I should be able to hear his sweet voice and probably even hold him. HOW AWESOME IS THAT!!!!!
The x-ray from last night revealed that the tube was just not far enough down. But, it seems from looking at past x-rays that the tube was never down. They have just cut back on the rate and all seems well.
Ms. Ann , Kristy Clampit , Polly, and Veronicia, we will sure be snacking well this week. Thank you all so much for the homemade goodies. Mine and Don's faces lit up when we saw some of our favorites that we haven't had in awhile.
Hayden's all-stars are going well. He said they have him on third base and he is adjusting well (he usually plays short stop). Lots of practicing, but he loves it. We have assured him that he can return to Memphis on any breaks he has and since his brother is doing so well, there might be a chance ole mom may get to see him play at least once or twice. I'm excited about that and Hayden's face lit up when I told him. I am missing my Hayden love. No one hugs me like Hayden. I definitely can't wait to see him again.
Hunter has decided to stay here in Memphis a little while longer. YEAH!! I love having him around. As you read last night, he is often the life of the party. He keeps me in stitches. He is the funniest kid I know. Don and I have switched shifts, because Hunter has decided he might want to sleep at the hospital some with me. We got him an air bed and he is all set for tonight.
Polly and Veronicia just left about an hour ago. I hated to see them go. I enjoyed having them here so much. It was so much fun just hanging out with them. They are some of my oldest and dearest friends. I sure hope they get back real soon.
JinJin is hanging in there. I'm afraid she gets the raw end of the deal somtimes. Don and I tend to vent and well it's either each other or JinJin. She takes it like a pro and keeps on going. Before too long Jin will be getting her psychology degree and doing some counseling on the side. We love you Jin and appreciate all you do for us.
The Bone Marrow doctors just came in to look at Jake's skin. She said in order to have GVHD of the skin, you have to have a graft. So she was pretty encourged. It is a light case of it. Just some redness on his arms and legs. She said if it progresses, she will do a skin biopsy.
Well, he is stirring and so I must go. Keep the prayers coming. We love you all so much for staying with us during the long haul of this journey. Our prayer is that he is completely healed and can go on with a long healthy life.
He has an incredible testimony to tell, and I for one cannot wait to hear it.
BELIEVE,
Staci

Monday, June 19, 2006 11:16 PM CDT

UPDATE: Tuesday, 8:45am
Spoke with Don and Baby Jake did well through the night. Don was going to bed and Staci was taking her shift.

Reminder: Spaghetti Fund Raiser Planning Meeting this evening at Drew Elementary 5:30 PM. Bring any money collected, number of tickets sold, and any deliveries to be made....There is planning to be done.

BELIEVE
Baby Jake's Uncle Eddie


I come to you tonight in support of two special little guys. Asher and Jacob(twins).www.caringbridge.org/visit/asherandjacob
They are both in need of some special prayers. Both have been on a vent,and fighting hard to get off. Jacob however is in critical need for some tee tee. I know Jake's prayer warriors are experts at asking God for tee tee. So please say an extra prayer tonight for him and his brother. His parents could also use some words of encougement too. Thank you all so much. I can't tell you how many times a day I have people come up to me and make comments on the support we have. Everytime a need arises you guys always step up to the challenge. May God bless each and everyone of you for taking this journey with us and helping so many others along the way.
Staci


What a great day! First of all, Staci was delighted (as were we all) to see her dear friends, Veronicia and Polly. Polly just happens to be a hair dresser, sooo...Staci got a (much needed) hair color, hair cut, and pedicure. What pampering! Then Jakie Poo was more alert today so we had to watch him even closer. His hands can now get all the way to his vent. At 4:30, Nurse Julie reported that his blood gases were so good that he would remain on the CPAP, which is just oxygen with no help from the vent. He will get assistance from the vent later tonight so he can rest easier. That’s a lotta praise!! Later this week, probably Thursday or Friday, he will be scheduled for new lines, better known as his "buddies." One little problem that's happening now is that he just threw up, so an x-ray is about to be taken to find out if the stomach tube has risen up and is not far down enough in his stomach. The problem could also be that his stomach has not expanded enough for the amount of liquid "food" he is receiving. Whatever it turns out to be, we just don't want that sweet baby throwing up anymore.
Jin

Now...our guest updater tonight is..it's me...Polly! Veronicia and i have had a great day here with Staci, Jake Don, Jin and Hunter. This morning, Jake held Veronicia's hand for a minute...the best moment by far for her! He looks GREAT!! If any of you can imagine being swollen to the point of not being able to see his eyes, he's thins baby! Nurse Julie was in putting lotion on Jake...he liked it because he actually raised up his foot to her when she pulled back the covers. What man doesn't like his feet rubbed! Don gave us the Monitor 101...green number is pulse rate, blue is O2 sats, red is blood pressure, etc... After we mastered that, we went to the parent room to wake Staci up. She takes the middle of the night shift and Don takes the early morning shift. They share bedside duties during the day. We visited for a while, grabbed a bite of lunch, and then got straight to the beautification. Did I mention that Jake held Veronicia's hand? Ok.. We had too much fun doing color in a 6' by 8' square room. Once it was time to rinse the color, all three of us were in the bathroom...what a sight! Now, Staci has good hair and good toes! I will finish with our experience at dinner. Hunter voted for the Big Foot Lodge. A local hot spot on the weekends, it was rather quiet tonight...until Hunter found the jukebox! A large group of college aged students came in and helped us loudly belt out some of our most favorite tunes from days gone by. I know some of you will remember the good ones like "We are Young" Pat Benatar (sp?) "Livin on a Prayer" Bon Jovi, "Pour some sugar on Me" Def Leppard, and a senior trip favorite.."Hard to Handle" Black Crows! What a walk down memory lane we have had. It is breaking our hearts to think of leaving tomorrow. But we may be back next week...so until then, keep your dial right here!

Keep Prayin and Keep Believin...God is doing great things here!

Polly Norris and Veronicia Wood

Sunday, June 18, 2006 9:34 PM CDT

GREAT UPDATE 2:15PM
Jake is taking a well deserved nap right now. He has been busy most of the morning with physical therapy, bed linen changes, and wonderful care from the nurses. He has been awake most of the morning. They have moved him to a lower setting on the vent and he is now breathing ALL on his own. The vent is still providing him with oxygen support but is also at a low setting. His first blood gas lab from his own breathing was great. They will leave him on this setting a few more hours and then move it back where the vent can help him out so he does not get too exhausted. His PT visit was very good. He seemed to enjoy getting stretched and doing range of motion.

Please keep praying. He is moving along nicely but has a long way to go. It is amazing to watch him fight. He never stops trying.

BELIEVE,
Don



This is Jin Jin reporting LIVE from room 3007, SJCRH, Memphis TN. Jake has been arousing quite a bit the last few minutes, so much so that Staci called for his nurse to make sure he wasn’t too agitated. Staci says this is the most alert he’s been since coming out of sedation. His eyes opened wider than ever, and he actually tried to “talk” and not just say mama or daddy. As you can imagine, he is letting us know how unhappy he is with the tube in his mouth.

Mo, Pops, and Hayden have headed back to West Monroe. Hayden’s baseball season has been extended for awhile longer having been selected to the All Stars. Congratulations, Hayden!

To Crystal Lore in Port St. Lucie, Florida: contact Tracey Moncrief (see info above) and I bet she will send you the recipe for chicken spaghetti. To Ms. Libby in Minden: all donations can be sent to Jake’s Medical Fund at the address shown right below the Habitat for Hope logo above.

Well, Jake is resting better now and all is well. Dr. Morrison came in today and told us everything was looking good and that he was very encouraged. Praise the Lord.

Polly and Veronicia: looking forward to seeing you tomorrow!

Jin Jin

Saturday, June 17, 2006 6:10 PM CDT

Saturday night 10:40pm
Prayer request list for Sunday School tomorrow!! We are changing it to 7 today, in honor of the Believer who told me to walk around Jake's room 7 times because of the miracles and blessings surrounding the number seven in the Bible.
1. Jake's bone marrow will BOOST his present marrow and cause it to start producing its own cells. This will mean fewer platelet and red blood cell transfusions. It will also mean immunity to protect againse fungus and disease.

2. No inflammatory process related to the recent transfusion of marrow. He is already past the acute phase, where we understood there to be a significant risk of "danger".However, the 100,000 T cells DID make the transfusion too, so we are praying they lay low and that there is no inflammation of vital organs, particularly lungs.

3. Jake will not suffer with GVHD (graft vs. host disease). In particular, we are praying that his "susceptible" gut remain protected and healthy, so there are no more of those nasty belly cramps, diarrhea, or constipation. Just a nice regular system! Also, that his skin stays clear of GVHD, as well as his liver, lungs, and kidneys.

4. Jake is currently infection free. The nurse said tonight, that they are not even requiring daily bloodwork, because his cultures have not grown anything in the past few days.... PRaise the LORD! That, my friends, is a miracle! We pray it stays that way. Jake's marrow is set to kick in around 7-10 days, but because his is so suppressed, it may also be up to 14 days away. He can do it. Jake's angels are fluttering near!

5. Please pray for Jake to feel a sense of calmness and no fear as he awakens from his deep sleep. He is being weaned from the sedation meds every 12 hours, so it will be a slow process. He should be a tiny bit more alert every day. Even today, when he tried to open his eyes, it causes displeasure as evidenced by his scowl. Yesterday, it would even affect his blood pressure. Pray that Staci and Don can keep the calm and soothing tone and the right words to help Jake remain calm.

6. Jake's muscles start waking up, and he shows those nurses and docs that he is ready to come off that vent. Also, go ahead and start asking God to prepare his body for heavy duty rehab. He is going to get to know his therapists very well!!

and 7. Jake will be completely healed on Earth. If it is by way of marrow, then let it begin. If it is by purely a touch of God's hand, and it is instantaneous, then so be it, and Praise the Lord. However God decides to heal Jake, let us all just remember WHO has been the granter of all our requests, and given even more than we can think to ask. Let us never deny that we KNOW that the Lord has taken over this battle. He is the victor. Jehovah Rapha, the healer...He has power over all things. Including cancer.
MO

Yeeeeeeeeeeeeeeeee...doggie!
That is country for yessirreee. Wait, that is country too!

Jake looks so good. He is "normal-sized", breathing with his little chest going up and down, and all vitals are within normal limits!! When I say normal sized, one must realize that the last time I saw him, he was probably 3x his normal size. All that fluid has gone byebye. Jake is getting Lasix one time per day, and it is causing him to tinkle a good amount. His vent is giving him 10 breaths per minute, but he is actually breathing around 34 times per minute, so as you can deduce, he is doing the majority on his own. He is very, very weak! They are weaning him from his sedation meds every 12 hours. This evening, we were told that they are really not expecting Jake to be totally off the sedation meds prior to his being weaned from the vent. This has to be a very slow process due to some withdrawal issues. However, they are really looking at whether or not Jake is able to move his head, shrug his shoulder, and even move his arms at the shoulders. These movements will prove that he potentially has the strength to lift his head and clear his airway without the vent tube down his throat. As the nurse practitioner was describing this, Jake started showing off. Today is the first day that Staci and Don have seen this head movement. Praise the Lord!!

Staci and Don had a few special visitors. Ceres and Byron Kitchens stopped by while in town to pick up a nephew. They are home folks from WM, and their son, Gus, was a patient at St. Jude a couple of years ago. Gus is healed from neuroblastoma!! AMEN! They very generously are buying a meal in the near future from one of Staci and Don's fave places. Also, Paul and Carolyn Guerriero came through town on their way to a ball tournament and also gave a donation to the "Feed the Raborns" fund! That is so thoughtful, and it is very appreciated. Speaking of ball tournaments, the WM local softball team, the Rippers, were in town for a tournament which was rain delayed. The WHOLE team came to visit. What? There is a limit to how many can visit in the ICU at once?! Who knew? When the next athletic team shows up, we will remember that!! Thanks for stopping by!

Don wanted me to be sure and say thanks to his aunt, Kathy. Sorry, Cathi, I don't know how to spell it. But, Kathie, they are both certainly appreciative. Angel Denise Yates sent a donation and a note that she is also "sowing into the miracle". This is her way of supporting the upcoming spaghetti lunch... this coming Friday. Don't forget! Email Cindy or Tracey above with questions. Lastly, Cole Tanner's grandparents lovingly sent a donation too. Please forgive me for not going back to the room and asking Staci your names. She told me, but I am in the ICU waiting room, and I will certainly lose what I have typed if I don't move right along. You are very kind. Cole was also a good friend here at St. Jude and at the Ronald McDonald House. www.caringbridge.org/al/cole No, not lastly, because there is one more... Nurse Nekayeh (and David and Chula!) brought Staci a Beth Moore devotional book which had a couple of entries written by her missionary mother in law. It seems that their family has had the experience of crying out in desperation, and witnessing a miracle of HEALING! Praise the Lord!

Let me tell you one more little story. I have been able to see Jake really struggle to open his little eyes. They are just so weak. Imagine post- surgery, when you are sedated to the point of being terribly weak and groggy, but you WANT to look around! Anyway... I have also seen him moving his arms, grabbing his covers and pushing it down, mouthing "mama" and "daddy" and focusing on the TV to watch Spongebob. (By the way Staci knows these episodes verbatim... it is hilarious to watch her act out Patrick and Squiward's roles!) What may have taken the cake was when Hunter was in the room and was Jake was weakly holding onto Hunter's hand. Hunter stepped back and pulled his hand away, and Jake's little arm reached up into the air, with his hand opening and closing in a fisting fashion, as if to "call" Hunter back to hold his hand. Is that the sweetest?

I have heard very little about the balloon launch, so give us an update. It was very thoughtful of those of you who were able to attend to make it out to the mall this morning. This was a great way to offer support to the families of the two young men who are living in Heaven, and to send messages of hope and awareness to those who find the balloons. We appreciate your gathering for this.

I hope to keep you well updated during my one day stay! I will try to provide your list for Sunday School later on this evening.

Oh and by the way... PRAISE THE LORD. Mo

Friday, June 16, 2006 11:23 PM CDT

Peaceful night here in the ICU and we plan to keep it that way. We are closing in on the 12 hour mark and the chance of Jake having an "acute" reaction to the infusion is getting smaller. His lungs sound clear, vitals look good, and gases are normal. As always, the team has a close eye on him. I'm always amazed at how attentive they are to his every need.

Today was another one of those days that just blows your mind away. It is beyond words to describe the emotions you feel when you watch what could be the cure for your son going into his precious body. It was truly amazing. It was also a little stressful. Since Jake is still in critical condition the team was prepared for anything that might happen. A little while before the infusion the nurse brought in several bags full of various medicines that were taped up next to Jake just in case things did not go as planned. At the time of the infusion there was 3 nurses, 2 doctors, 1 blood tech, and 1 respiratory tech either in Jake's room or right outside his room in case they were needed. They are so prepared for anything.

Jake received 23 million cells in 8 minutes or roughly 2.8 million cells a minute. The doctor said they are pleased if they can get 10 million cells and Jake got twice that amount so they were very pleased. Praise God for our donor in Germany. Please pray for her health as she recovers from her procedure. She has given Jake a chance for a cure not once but twice now.

A big thanks to Dawn and Todd Pierce(ms/shaepierce) and Tonya Nason(ms/brentnason) who provided us with two home cooked meals tonight. The food and fellowship was awesome. Both families mean the world to us. Thanks again guys.

The plan is to let Jake rest through the night after his big day and then the team will assess him in the morning and possibly start weaning him from the sedation medicine. This will be a trying time for everyone. The goal is to keep him as comfortable as possible and we will do just that.

Thanks for everything. Jake's Believers are the best. Please keep the prayers coming. Jake needs every single one he can get.

Good Night.

BELIEVE,
Don

Thursday, June 15, 2006 9:03 PM CDT

UPDATE 3:00PM
Looking good so far. His blood pressure is the major concern but somewhat expected with him waking up more and moving around. Keep the prayers coming. Keep checking in - the miracle is gaining speed.

BELIEVE,
Don


UPDATE12:03
Can you believe, we are done!! 8 minutes is all it takes to heal this sweet boy forever.That is our prayer. Please join us in asking God for Jake's complete healing here on earth.
Please pray for no side effects now or down the road. We love you and thank you for your continued support.




UPDATE 11:55
HERE WE GO! If you are reading please drop to your knees and say a prayer that all goes well.


UPDATE Friday 8:50AM
As of right now, the time for Jake's infusion is 11:30AM. Check back as this could change.

BELIEVE,
Don




Don't look down at the bottom of the page... see if you can pass the "Who is writing this?" test!!

Well, it was a kinda slow day at St. Jude, ICU, room 7! Because Jake is doing so well, and the vent is set incredibly low, they plan to leave it there while Jake gets his marrow transfusion. If there is some problem, there is leeway (sp?) on the vent. WHEN there aren't any, they will be close to having Jake right on off that ventilator!! It seems it might be more like the first of next week now. Probably not on Sunday, awwwwwwwwwwwww!! We need to give the new marrow a little time to settle in and make sure there are NO T-cells (Prayer request!!). If there are T-cells, they will head straight to the area that has the most infection/"funk", and for Jake that is his lungs! Just like with the granulocytes, it could cause an inflammatory response and cause the lungs to need a little more help. We need you all to pray, pray, pray and claim that Jake will be just fine. The technicians, who are presently at work on the marrow (another chance to pray for their skillful hands!), are working to separate all T-cells from the red blood cells and platelets. Jake's body will just not know what to do without needing transfusions every day. I remember when Jake started this journey, I kept up with EVERY transfusion. I kept up with his temperature before and after. Many may not know this, but I have also kept a journal from me to Jake every single day since he was diagnosed... this one full of emotions, fears, prayers, and dreams for Jake. Needless to say once you get the first hundred or so transfusions, counting them isn't so interesting anymore! Now I count rounds of chemo and surgeries!! That poor baby. But he is THE MAN! His ventilator is set to give Jake 10 breaths per minute. His dad told me he is breathing more than that, and is breathing on his own the majority of the time. He is breathing 35xygen. Weaning occurs at about 30or really just not more than 35. His PEEP
(has to do with expiratory pressure and is responsible for oxygenating the lungs) is at 5. My friend, who is also an internist and pediatrician, was over here the other night, and bless her soul, I had her give me "Ventilator 101". One thing I wrote in my notes is that Jake will be ready for extubation when his PEEP is between 5 and 7.5. She then said, "probably 5". Welllllll, we are there! She is also the one who told me about the O2 at 30-35t time of extubation trials. Further, Jake's blood gasses will need ot be in normal range, (and they are!). Staci said his BUN, which is a kidney funciton indicator, was 102 a few days ago. Normal is <21. Jake's is now in the 30's. Praise the LORD! Haven't I said, "God is all over this!"? Praise Him for keeping Jake in the cup of His hand (Mr. Skeet's favorite picture!!).

Staci said she thought Jake was watching Spongebob a little while ago... with one eye. Of course, me, being the spaz, asked, "Which one?" And for any other anal types out there, it is the left! She said he remains sedated, and the docs want to keep it that way until post transfusion. They may start to wean a little tomorrow (and Jin said they may have to use restraints... .UGH!), but it will be done slowly. Staci said she can tell he is upset at times, but she continues to pray that his meds will not let him remember! This is commonly the case. Staci says he has been saying "mama" with his little lips, and she even thought he tried to say, "daddy". Isn't he so precious?

When I called to talk to Staci a day or so ago, mom said "she said she just could not look at these four walls any longer." I said, "Oh good.. .where did she go?" She said, "She walked down to clean out her car." In the parking garage!!! What a vacation! In there, she found a Mother's Day gift from Angel Stacey, and wanted me to say thanks. She also sent a Frogger game and a subscription to Nickelodeon magazine. Also, Angel Penni sent Jake a Dora movie boxed set which will be great for when he is waking up. Jake still has LOTS of boxes to open, so we are just waiting until he feels like opening them, so he can be surprised. I never thanked the lady from Ohio who sent all the buckeyes... I keep mine in my pocket everyday. So cool. I don't think I have ever seen a buckeye!! Forgive me for not having your name handy. It is in my purse outside in my car where I pulled it off the package. We appreciate the care package. The boys will have fun with the Luau gear. Mrs. Phyllis Sullivan, a believer from South Haven, MS, provided supper tonight. It was, appropriately for Memphis, BBQ!! She was joined by her friend, Melissa, and her daughter. Staci said to be sure and thank you all very much. You are so kind!!

I have many people who have asked me how to send donations to Jake's medical fund. I just direct them to the address at the bottom of this page. However, when donations are made, it would be nice if there were some way for Staci and Don to know who they are from so they can be acknowledged. If you choose to remain anonymous, that is understandable, but if you don't mind, please email Staci and Don at sraborn@jam.rr.com or me at mgroves@jam.rr.com to let us know of your donation so we can appropriately thank you. One last thank you is to Todd and Dawn Pierce for the home-cooked meal this past Tuesday. Staci said it was delicious. I just want to let you know that ol' MO MO is coming to town tomorrow evening!! Get out those pans! Pops, Hunter, and Hayden will also be heading to St. Jude.

OK, for the prayer requests:
1. Jake's marrow to be free of T-cells, healthy and full of the good cells that will be just the needed boost to jumpstart his own so transfusions will be a thing of the past. Also that it will kickstart his marrow to be anti-tumor!
2. Jake's lungs will be perfectly and completely protected, with no irritation or inflammation from the transfusion. Further, that he will be weaned from the ventilator in a timely manner.
3. As Jake's sedation meds are weaned, he is calm and not scared. He will be at peace, because God is whispering to him, and holding Him in His hands.
4. Jake needs to remain free of infection. I will tell you (and I am sure you remember yourself) that two weeks ago when they told us it would be two weeks until the marrow could get here, that seemed like a looooong, looooong time! But, it is upon us, and the Lord is keeping Jake safe and prepared for his healing! We need to ask for Jake's continued protection from germs, bugs, viruses, and FUNGUS! Keep asking God to surround his bed (top, bottom, front, back, and sides) with angels. Their wings will flutter away all bad germs, and jake will only breathe in clean, healthy air!
5. Jake's blood pressure is a little high. Staci said this could be due to anxiety and fear... or anger! He may very well not appreciate all this mess too much! ANyway, please remember to pray for his vitals to remain very steady, in perfect preparation for his healing.
6. Jake's GVHD to remain in check. If God sees that Jake needs a little GVHD to attack a little tumor, then that is what we hope to see. However, we pray that there is no discomfort (especially to his belly or GI tract... he has suffered ENOUGH with that!) and that it is short lived with an obvous and easy treatment to alleviate it. Also, we ask that IF there is GVHD, that it does not mess with his LUNGS, LIVER, KIDNEYS, HEART, or GUT. And just for a praise, Jake responds well to his steroid skin cream, so his skin GVHD seems to be controlled at this time!
7. Staci and Don to have peace and ease of mind. May they feel the power of the LORD come over that room and over their son as he receives his healing. They will be confident and excited about the healing that is occuring, and be very proud of the witness their son has been to multitudes!
8. And this rounds out the "simple 8".... Complete healing on EARTH!! That means no more cancer, no more ventilator, restored lungs, restored physical condition, restored appetite, normal brain function, good healthy heart, kidneys, lungs, and liver.

Okay, I provided you a list, so print that sucker out. It is not the Sunday School list, but it is one we really need to focus on . Jake is scheduled to get his transfusion in the morning. When a specific time is known, Don, will you please post it... that will be our collective time to pray for those donor cells to do their healing work. Good night to all.....

IT IS MO! and oh, have I reminded you that you are witnessing a miracle?!

Wednesday, June 14, 2006 9:18 PM CDT

Hello fellow Jake Believers. It's Dawn again. I just got off the phone with Don and he asked me to update, so here I go.

Today was...a calm day. If you missed Don's 10:30 a.m. update this morning, please refer to the journal history. Jake's settings have remained the same all day. They plan on not changing anything soon due to him getting his new cells Friday. The cells should arrive in Memphis tomorrow, Thursday, night. The transplant should be Friday between 10:00 a.m. and 2:00 p.m. (Sounds like the cable company huh?) Anyway, you have the times, so you know when to pray.

Jake is taking 18-24 breaths per minute on his own. He's doing great. When I was talking to Don, he said that he didn't think Jake mouthed Momma. He thought that he mouthed Taco Bell or soft taco. :-) As soon as he's clear to have Taco Bell, you can bet he will have plenty of it. Probably a good stock tip for some of you. :-)

One of Jake's Believers attends Hope Pres. Church here in Memphis. She, Kacy, contacted someone at Hope to let them know about Jake. The person that she contacted sent lots and lots of emails out to the church to sign up to pray for Jake. Last count, they have 561 people that have committed to pray for Jake this week. Thanks Hope Presbyterian. Thanks to all of the churches that have Jake on their prayer list. Don and Staci really appreciate it.

While praying for Jake tomorrow, please remember the families of Jacob and Will as they have the funerals for these two beautiful boys. Most of you know mine and Todd's story. We know what Jacob and Will's parents are feeling right now. The pain is so very surreal. Please pray for comfort for these families. Continue to check on them in the days, weeks, months, and even years to come. They will always want to hear their child's name mentioned.

Okay, I'll end now so you can sign Jake's guestbook. Thanks for loving the Raborns and caring so much for them. They are very grateful for you prayers, meals, gifts, and time.

Believing,
Dawn

Jake,

Sweet dreams big guy. I pray for a good night and even better tomorrow. We love you and look forward to seeing you Friday. If you want to mouth Mason, Todd, or Dawn, you feel free to.

Tuesday, June 13, 2006 10:29 PM CDT

10:30AM Update
Flipper is coming up for air. The team has just turned the rate(number of breaths the vent supplies) to 10 and and he is averaging around 21 breaths a minute on his own. He will stay at this setting the rest of the day to let him get use to breathing again. He is on 30 percent oxygen and his MAP(airway pressure) is down to 10. He is really rolling right along. Pray he continues his forward progress.

Another good bit of info - Jake's AFP(tumor marker) is 1790. This has only gone up around 400 in about 6 weeks. This is good news considering he has nothing to fight the tumors. We hope and pray the marrow boost in a few days will help rid my baby of this disease for good.

Thanks for believing,
Don





9:00AM Update

Jake is having a good morning. His labs and vitals look great. His blood gases are normal and he is opening his eyes more and more.

Keep checking in. I will post any news if it happens.

BELIEVE,
Don




Do you all think you have waited long enough for someone to update? It’s Dawn Pierce again considering it an honor to update you all on a strong blue-eyed little boy named Jake. Yes, I saw his eyes tonight. It was WONDERFUL to see them. I also got to hold his hand for a while. I didn’t want to leave his side. My husband, Todd, got Jake to squeeze his hand on command. I couldn’t wait to call Mo and brag about seeing Jake’s beautiful eyes. She is having a fit. Don’t worry though. She will be here before the weekend. .

Don, Staci, and Jin Jin all three had a little spring in their step tonight. It was so good to see them very excited about Jake’s improvements. To help you understand how great this is, according to the medical books Jake should not really be opening his eyes until about 24 hours after the paralytic has been stopped. Not our Jake…he’s got things to do and no time to waste to get them done. God is sooo good, ALL the time. Would you like some more good news? Jake’s doctor told Staci today that he didn’t see why Jake couldn’t be off the vent by Father’s Day. (Best gift for Don huh?) That Jake is a true fighter and we know that God has some big plans for him.

Now, what we need all the Believers to pray for is as follows:

• Jake’s lungs to continue to heal
• His kidneys to continue to function properly
• His other organs to be protected from any damage
• His donor and the cells to be blessed by God’s hands
• The new bone marrow cells to go in and attack any cancer that remains without touching Jake’s lungs or any other organs
• Jake’s fears to be calmed as he wakes up more
• Don, Staci, and Jin Jin’s fears to be calmed as he wakes up more
• Jake to be completely healed here on earth so he can live to tell of God’s miracle healing power

Isn’t God so good? We serve an awesome God and I am so glad to know that He is with us each step of our way.

Thanks for praying for Jake and his family. They are very special to Todd, Mason, and me. It’s a comfort to know what a wonderful group of Believers they have.

I just got a message from Jin Jin and she said that Staci was talking to Jake a few minutes ago and he mouthed the word "Momma". Go Jake and Go God.

Trusting Him,
Dawn – A Jake Raborn Believer

Tuesday, June 13, 2006 10:40 AM CDT

UPDATE 1:35PM

Staci and I just got to see the most beautiful thing -Jake's baby blue eyes. He is starting to move around and will open his eyes for a brief moment. What an amazing sight.

Believing,
Don




Jake is doing well this morning. The paralytic medicine was just turned completely off which will allow Jake to start moving and taking breaths. The sedation and pain medicines are still at full dose and they must be weaned slowly.

Please pray for Jake that he tolerates this next move and that his anxiety will be kept under control. We will be right here to help him.

Please continue to keep Jacob's family and Will's family in your prayers as they deal with their loss.

Sorry this is short but will try to do little updates later this afternoon.

BELIEVE,
Don

Monday, June 12, 2006 6:49 AM CDT

10:30 p.m. update

Jake is doing exceptionally well. His oxygen is down to 30, the lowest number since he’s been on the vent. That’s a HUGE praise! The paralytic meds are being reduced so he will soon be able to move around and begin to breathe over the vent. Not sure when that’s going to occur, but we’ll keep you updated. The down side to that is that once he can move, the first thing he’ll most likely grab is his breathing tube in his mouth. But wouldn’t we all? Just pray that he will remain calm and that WE will remain calm so we can help him.

Our hearts are heavy for Jacob’s and Will’s families. Thank you for your uplifting messages to us. We’re sad, but nowhere near defeated. We’re on the Believe Express for as long as it takes. We’re glad you are, too.

Jin Jin




3:00PM UPDATE

Another beautiful baby has earned his angel wings. Will Poteet-Berndt(ky/will) passed away just a few minutes ago here in the ICU. Please remember his parents and his 4 sisters in your prayers.

God bless you Will.

Not a good day. Not a good day at all.
Don


UPDATE 10:35AM

Just checking in to let you know that Jacob Duckworth(fl/jacob) earned his angel wings this morning. Please pray for this family.

God bless you Jacob,
Don


Good morning Believers. Just wanted to start your week off right with a good report from Jake's Room. He had a really good night and his vitals, labs, and blood gases look really good. His oxygen was lowered to 35 percent during the night and he has tolerated that move.

This is a VERY big week for Jake. So far so good on the new vent but the vent is doing all the work for him. I'm sure if he continues to do well they will slowly wean him down which could mean turning off the paralytic medicine which would allow him to take breaths. Things are still on schedule for Jake to receive his second infusion from the donor in Germany to try and jumpstart his immune system. He NEEDS his marrow to start working. This is very critical and the new cells must start working. I will let you know the estimated time and date of the infusion when I know. It should be late in the week.

Prayer Requests to start your week:
- Lungs to heal and continued toleration of new vent.
- Kidneys and other major organs to function properly.
- Marrow donor to be healthy and safe during her week.
- No infection.
- His brain to continue to heal from heavy radiation.
- safe, smooth, and effective marrow transfusion.
- cancer to be destroyed and never return.
- his complete healing here on Earth.

Please continue to keep Will(ky/will) and Jacob(fl/jacob) in your prayers as they continue their battles. Please remember all the children who are fighting this terrible disease.

Have a great day on The Believer Express.

BELIEVE,
Don

Saturday, June 10, 2006 8:38 PM CDT

10:30 p.m. update

I didn’t want you to go to bed worrying about our little man, so I’m happy to report that he has been suctioned again and all is well. He is truly amazing. He is the strongest little boy I know, and I’m so very proud of him. At present, all numbers are good. The doctor just came in with lab reports and said everything was going in the right direction. Praise you, Jesus.

Once again we have been blessed by one of our Jake Owen Believers. Karen VanSickle, her daughter Nicole, and her very handsome grandson brought us lunch today. It turned out to be lunch and supper because there was so much of it! What a delicious meal! Thanks, thanks, thanks!!

I hope everyone has a very restful night.

Jin Jin





8:00 p.m. and all is well…

The Jakester is still keeping on keeping on. His blood pressure has been a little low this evening, but no one is alarmed, so we aren’t either. I was just reminded how special the caregivers are here at St. Jude. Nurse Pam just left and Nurse Amiee has come on for the night shift. They talk to Jake just like we do. They always want to know if WE need anything. The respiratory therapists are so patient when we ask all our questions. Speaking of, the RT is bagging him right now while Nurse Amiee is suctioning him. The RT turned to me and said, “I promise you we aren’t trying to scare you over there.” She saw me sort of freeze…the sound is enough to scare anyone.

Boy, how things can turn on a dime around here. All of a sudden Jake’s bp began dropping very rapidly—all the way down to 41/34. The on-call doctor was called in and the pace picked up quite a bit in here. It’s especially scary to me when the RT is bagging him and has to do 2 or 3 things at once; so naturally, she can’t keep a steady pace because her hands are so busy.

Well…just when I thought everything was settling down, his sats dropped so they decided to suction him again. Keep in mind that when they stick the suction tube down in his lungs, he gets no air (or breaths). The wait seems forever, especially while watching his number of breaths (which is 30 on this vent) drop to 10 and sometimes no number shows up at all. It gets quite tense in here with all the alarms going off.

Perhaps I am giving too many details. But my thought is that we shouldn’t get too comfortable when Jake takes a few baby steps in the right direction. We should realize that prayers are still needed ALL THE TIME!! As you can probably tell, this is one scared grandmother. So much for going back to the Target House early tonight. I think I’ll stick around for awhile. Jake seems to be leveling out, so hopefully all is well again. I can’t tell you how comforting it is to know we’ve got all of you behind us. We read each and every guestbook entry and we get so much peace just knowing you’re out there praying for our Precious Angel as hard as we are. Thank you.

Jin Jin






12:45PM Update

Jake is rolling right along. His blood gases were a little off but the staff was pleased with the results. His vitals look AWESOME and oxygen sats are 100 percent. The team gave him a bath, changed his linens on his bed and he is now lying on a pillow. The other vent he had to lay flat on his back but this one is more flexible. The best thing about the whole morning was that I got to HOLD him for about a minute. They needed to weigh him since he has not been able to be weighed since going on the oscillating vent. I got to hold him while they zeroed the scales on his bed. It was awesome. He looks so good right now.

Please keep praying. We need the lungs to heal, other organs to function properly, a smooth transplant, and cancer to go away.

Talk to you in a little while.

BELIEVE,
Don

9:30AM Update

Jake is on the new vent and seems to be doing well. His blood gas labs which will be drawn around 10:00 will be an indicator of how well he is doing.

Please continue to pray for Jake. He is making a big step today and needs to make many more on his way to recovery. We will continue to take it step-by-step.

We will continue to update during the day.

BELIEVE,
Don





Sunday morning: 8:30am
Jin just called and said, "They are fixing to start the transfer." So, if you read this before going to church this morning, know that while we are in church, Jake is moving a step closer to healing, and please remember him during this change. Thanks... Mo

Another addendum 9:57pm
After reading Cole's grandmother's guestbook entry, I realized I forgot one...(to round out the "simple 8")
8. Jake will receive his earthly healing.... full and whole, healthy and happy, funny and loved!

And as for Miss Shirley Matthews's saying mom was "planted in the PICU waiting room"... well, I tell her she is planted all right... I tell her I think she has grown a tap root right out of her you know what into "her" recliner, directly by the waiting room phone!! Give her a call if you think I am exaggerating! 901-495-4050 MO
Addendum 9:40pm
Sorry, Virginia (aka Jin), but some particular Believers have gotten a little spoiled to a Saturday night prayer request list to print and take to church, so here goes...

1. Jake's transition to the regular vent go smoothly, with his oxygen saturation (how well his blood is being oxygenated by his lungs to perfuse the rest of his body, such as keep his brain full of oxygen) staying well above 95 percent.
2. Jake to surprise the docs wiht steady gains on the new vent, with decreasing assistance by oxygen percentage (now at 40) and with Jake starting to breathe some breaths per minute on his own.
3. With the transition to the new vent, there will be NO bursts in the lungs due to pressure. Claim Jake's lungs to be plenty healed to support the pressure necessary to "push in" the required O2.
4. Jake's kidneys will get a second wind, and the docs will be shocked when they are able to stop the kidney assist meds (Lasix), with Little Man teeteeing all the volume necessary right on out.
5. Jake's liver remains strong, processing the barrage of meds with no changes in his body chemistries, i.e. causing bilirubin to rise (jaundice)and lots more chain reactions. Just claim it strong and able.
6. Jake's upcoming marrow transfusion to go smoothly. His body will use this marrow to start making new cells and no longer need the transfusions of other people's red cells or platelets! There will be NO complications regarding the donor marrow!! That is our prayer!!
7. Continued confidence for Staci and Don regarding their decisions. Clarity in their answers, without a doubt that they are following God's will for Jake.
AMEN, then!


O.K. Believers: GET ON BOARD!! We got the word today that Jake will be transferring from the oscillating vent to the “regular” vent tomorrow. His MAP is at 16 and holding! Oxygen is at 45, and SATS are holding at 100. WooHoo!! Many prayers will be needed so this transfer will go smoothly with absolutely NO hitches. Keep in mind, however, that Jake will not be out of the woods. He will still be on a vent and will have to be weaned off this one as well. Please pray for his lungs to be healed so he can tolerate this vent and no catastrophes occur like last time. Also, when they deem him ready to get off the vent altogether, he will have to come out of sedation and be awake. My heart hurts just thinking about how scared he will be. Knowing Jake, he will have to have plenty of comforting words and reassurances that everything will be all right. Knowing me, I won’t be in the room because I know I will be anything but calm when I see his frightened eyes and his struggles. But wait, I’m getting way ahead of myself. Let’s just get him on the regular vent first.

Our buddy Jacob Duckworth (fl/Jacob) is in dire need of our prayers. Please check on him and his family and join their prayer vigil tomorrow night at 8:00 p.m. CST. We have grown to love this family. They have encouraged us many times during Jake’s journey, as we have also tried to encourage them. But they are in a place no parent should ever have to go.

Now you have two special little boys to tell your Sunday School classes, Life Groups, etc. to pray for tomorrow at church: Jacob and Jake. Even now, send out the word to all your prayer partners in case Jacob needs urgent prayers before time for the vigil and in case Jake’s transfer should happen early in the morning before church. They haven’t given us a time for it yet.

We can never tell you enough how much we appreciate your faithfulness to pray for Jake. It is so comforting to know we can turn to you to join us in petitioning Jesus to help Jake through each and every step to his COMPLETE HEALING ON EARTH!!!

We will keep you posted tomorrow as events occur.

Jin Jin

Friday, June 9, 2006 11:27 PM CDT

Hello Believers. It’s Jin Jin here. I’m happy to report that Jake looks better today than he has in many days. At least that’s what I think, and Kacy Acree (who came by to visit this evening) agreed with me. He looks much more like my Precious Angel and his settings on the vent have even improved a little. This has definitely been a better day.

While sitting in the ICU waiting room yesterday (by myself) I met two new families. So new, they still had the “deer in the headlights” look. How well I remember feeling so overwhelmed and lost. Fortunately, I was able to talk to them and encourage them a little. I remember how kind people were to us when we first got here. These “newbies” needed to know a few details of how things work around here and what to expect down the road. I encouraged both families to start a Caringbridge site asap because of all the support gained from the guestbook entries. So, I unofficially welcomed the Rayburns (go figure!) from Hattiesburg, MS whose 5 year old son (who is a twin) was diagnosed with ALL and the Brooks family from Peoria, IL whose 18 year old son also has ALL. Maybe you could offer up a prayer for them so that they can find a little peace and comfort during their induction phases of treatment.

We were so touched tonight when Aunt Bonnie (Don’s sister) called to tell us about the surprise from the Victory Baptist Church Bible School. All week the offering had been designated for Jake, and the children truly gave from their hearts. At the Family Night Commencement, another offering was taken. Aunt Bonnie and family were asked to be present to receive the gift for Jake. She was in tears when she called because there are some mighty sweet and generous people at VBC. We can’t thank you enough. God bless you.

Some others we need to thank: The Macaroni Grill dinner last night was sent by Lisa and Jason Tanner from Mobil, AL. What a treat! Not a crumb was left! The cake from Angel Holly and JakeDog…YUM-MEE! The snack package from Carol Hendricks was great! And the PICU Survival Kit from “A Friend” in Washington, D.C. was exactly what we needed. The HUGE care package and donation from the West Ridge Middle School Faculty (my school!) was awesome! Don just reminded me how terrible he feels because he knows we fail to acknowledge so many people who also send things. Please know that we thankful for and appreciate everything you do for Jake and our family. As mentioned before, there are many packages still stacked up at the Target House that Jake has never opened because he didn’t feel well enough at first, and now, of course, he can’t. Just know that we are amazed at your generosity, and please forgive us if we fail to thank you in the updates.

For those of you who asked about Will from KY, Staci and Don met him and his mother today in ICU. He is a precious little boy with four sisters. His site is Caringbridge.org/ky/will.

Mo, Todd, Hunter, and Hayden send their hellos from Gulf Shores. The boys are having a great time, sunburn and all. Angel Holly, they wanted to tell you that they found a large new line of dog clothes at Target. They tried to pick out their favorite, but finally decided JakeDog needs to inspect them for himself so he can express his preference.

Now to the important stuff: that “puppy dog” stuff Staci enjoyed so much, well what she should have said was “puppy chow.” It’s made from Chex cereal and powdered sugar. I’ve made it before, but I don’t remember everything. Sooooo, Debbie Earl, post that recipe since people want to know. I can verify that it really is quite good!

To close, I’m pasting Don’s list of prayer requests from a few days ago since this is still what Jake needs:
Lungs to heal
Kidneys and other major organs continue to function properly
Jake's marrow to start producing again
No infections
Fungus to clear
Cancer to go away forever
His complete healing here on Earth

Again let me thank you for the support you give us through this site. Our spirits are lifted each time we read your encouraging words, scriptures, songs, and prayers. It is so comforting to know that we don’t have to travel this journey alone.

Jin Jin

Thursday, June 8, 2006 9:20 PM CDT

Hey Believers, so sorry we haven't been writing lately. But it's been pretty slow around here. That's a good thing. Don and I have been catching up on some much needed rest. They were able to wean the vent down some today and Jake has handled it like a champ. He looks so peaceful, I like to think he is resting in the loving arms of Jesus right now. His kidney's are holding their own, they have slowed down on the lasix(teetee medicine), he only gets it every 6 hours instead of 4.Remember babysteps!
I want to thank Todd and Dawn Pierce and Todd's sister Gail, they have all given platelets this week in honor of Jake. What a great way to give back to such an awsome hospital. and Lord knows Jake is going through some platelets. Also thanks to my cousin Debbie Earl Aunt Nellie and family. The basket of goodies were just what we needed. I loved all the homemade goodies. I hadn't had the puppy dog(?) things in so long. I inhaled them all in 2 days. We also had supper delivered tonight. I not sure who paid for it.I will have to make some calls to find out, but you know who you are and Thank You. Don has been craving Macoroni Grill for sometime now. Habitat for Hope arrange it all thanks to Ms. Ashley for delivering it to us. That was so nice of all of you. we feel so honored to have all you believers in our lives. Thank you for staying with us on this journey. There have defintely been some ups and downs, and you have prayed us through all of them. We have decided to go ahead with the transfusion. We know that when the day comes all of you will be covering Jake with the prayers he needs. This whole ordeal has been an experiment from the beginning. Our hope was that through Jake's triumphs they would learn and be able to help so many more children. We feel this is the right choice. That Jake will open his eyes soon and he will need the cells to help his body thrive.

Well I'm off to bed, I'm not sure I will ever catch up on my z's.
BELIEVE,
Staci

Wednesday, June 7, 2006 11:31 PM CDT

Sorry that you're just now hearing from us but both of us were extremely tired and we have taken turns sleeping today. We both feel much better and rested.

Jake had a really good day. The vent settings were lowered throughout the day. His labs, blood gases, and vitals have been great and he looks much better to me. They are rotating him on his sides now. He spends 4 hours on one side, then his back for 4 hours, then the other side for 4 hours and then repeat. He seems to really enjoy it and that is all we care about. He is so amazing and such a fighter.

Please continue to pray for his lungs. They are the top priority now and need to heal. We need several days like we had today with no setbacks. Please know your prayers are working as Staci asked specifically for lungs yesterday and today was such a good day on lowering the vent. Please continue to pray for the following:

Lungs to heal
Kidneys and other major organs continue to function properly
Jake's marrow to start producing again
No infections
Fungus to clear
Cancer to go away forever
His complete healing here on Earth

Thanks for always being there. Keep the prayers coming. Talk to you soon.

BELIEVE,
Don

Tuesday, June 6, 2006 11:21 PM CDT

Wed. Night 10:25 PM
Just a quick update from me, Uncle Eddie.

WOW! What a great turn-out for the "kick-off" meeting for Baby Jake's fund-raiser. I think Cindy told me that there were already 90 pans distributed and feels certain that she will go over 100 by tomorrow. I think these ladies have a "secret" goal of 150 pans(people cooking). So if you like to cook speghetti let us know, okay let Cindy or Tracey know since they are the organized ones. They have an easy recipe to follow and it sounds delicous.

It was so nice to meet so many that I had only seen as names on the "guestbook." It was just overwhelming to see that many BELIVERS together working for our little guy. I wanted to thank everyone who came and/or called to get plugged in for Jake. I wanted to thank everyone at the meeting individually but there were so many and I did not get tell eveyone...and I wanted to express our gratitude for your Support, Love, and Prayer for Our Family

BELIEVE!
Baby Jake's Uncle Eddie



Hello fellow Jake Believers. This is Dawn Pierce and I consider it an honor to update Jake’s site tonight. We just got home from visiting Jake. Our last time to visit him was on Saturday evening. Jake looks better to Todd and me. The swelling in his face, head, and hands has gone down and I could honestly see a little of old Jake in his face tonight while I was putting medicine on his lips. It was a good feeling too.

If you haven’t read Staci’s update from earlier today, please refer to the journal history. As a mother who has “been there”, I ask you all to please pray for Don and Staci. They have some decisions to make and they need guidance and wisdom. Staci says that she has a peace about Jake and I am so glad that she does. We all know where that peace is coming from. (Thank you Jesus.) Anyway, while you are praying for Jake’s lungs to heal, pray for Don and Staci as they face the next couple of days.

When we left tonight, Jake’s vent settings were looking good. His MAP is at 19 and the oxygen was at 50 percent. He was holding steady with his SATS at 96 to 97. They have been moving him today from side to back to the other side back to his back to the other side. He seems to have tolerated that very well. I can’t express enough how good he looked tonight. We don’t get a chance to get up there everyday, so we are able to see more of a change each time we go up there.

I want to share a scripture that I found tonight that I thought was fitting. “When I pray, you answer me; You encourage me by giving me the strength I need.” Psalms 84:11. It is so wonderful to know that God is listening; He will answer and give us the strength that we need. Don and Staci, I pray that your cup is filled and overflowing with peace and strength.

Prayer requests are as follows:

• Jakes lungs to heal.
• Jakes kidneys to continue to function properly.
• Jakes other organs to be protected and not harmed in any way.
• Peace, wisdom, and guidance for Staci and Don.

Thank you all for standing in the gap for this wonderful family. They are very special and we know that God has His hand on them.

One more thing, if you live in the Memphis area and would like to donate platelets and/or blood, please call the donor room at St. Jude at 901-495-2024. Jake is getting platelets daily and they are in constant need of donors. Thanks.


Riding the Believer’s Express,
Dawn



Jake, we love you hero and can’t wait for you to get over this hump so you can come play at our house again. You are always in my thoughts and prayers. If I’m not praying for you, I’m praying for your mommy and daddy. You all have a very special place in my heart. We are so grateful that God allowed our paths to cross. We BELIEVE that you will be healed here on earth. We BELIEVE that God has a very special plan for your life. What a testimony you are and will be. Keep fighting Jake. Your train is full of Believers and I don’t think any of us are getting off the train any time soon. You and your parents are being covered in prayer. Sweet dreams Jake. We love you.

Monday, June 5, 2006 5:22 AM CDT

We just sat down with the Doctors for our 3rd meeting. I have to say these don't get any easier. A new dr. from the transplant team sat in today and did most of the talking. He has us making some scary choices. We were told today that our primary concern right now are the lungs they need to improve and fast. The transplant won't help heal the lungs, in fact it could cause problems. Not for sure , but there is a chance. And possibly the option of transplant won't be there again. We have to decide in the next couple of days so that they can stop the donor.

Bottom line for those of you on the vigil and those who are not we need some overtime prayers. We need to see some improvement on the vent settings. We need our organs to hang tuff and we need our lungs to heal!!!!!
THINK LUNGS LUNGS LUNGS!!!!!!!!!!!


Tuesday Update - 11:50am

Good morning Believers. I just wanted to let you know that I'm doing good today. I had a little trouble this morning but I'm doing good now. They are slowly turning my vent settings down. I'm just resting and getting stronger. Keep praying for me. My mom reads every prayer to me. Keep praying and I'll keep fighting.

By the way, I like the letter "J" for Jake and my good buddy Jesus.

Thanks for always Believing in me,
Jake




11:30pm
So many of you commented on Don's heartfelt update today, that I didn't want to start a new page. If you haven't read it, be sure to scroll on down.

Wow... what a day in cyberland... and how to respond? Well, this wasn't this person's first entry, but somehow the first one last week got missed by our Believers, aka Cyber mafia! I pondered how to handle it, but I think God laid it on everyone here to just let the Believers handle it, and handle it, I BELIEVE they did! To all our new Hope Pres. signees, thank you so much for joining this rally. Welcome to sowing into the miracle of Jake. We don't usually have a single negative thing on this site, and hopw today is the end of it. I DO want ot set the record straight, at least as I see it, regarding Jake's medical condition. No one has said things are peachy. He is on a ventilator! In fact, he is on more support than an average ventilator. However, the respiratory therapists continue to tell me (and I ask a LOT!) that weaning from the vent just takes TIME! Today, he spent the majority of the day at 19 MAP (pressure to push oxygen in) and is now at 60 percent oxygen. If you have been following, you know that these numbers are a little lower than a few days ago, and a lot lower than a couple of weeks ago! SOooooooo, progress! The nurse, Nicole, who was in yesterday said something that kinda became an epiphany to me. She checked his pupillary light reflex with her little pen light, and decided to up his sedation. When I asked why, she said, "Earlier today, the reflex was slow and sluggish. Now it is more brisk, and I don't want to risk him waking up." Can you imagine him waking up paralyzed and on a vent? It would be horrifying! That was when I realized that Jake's brain is A-OK! If he were to wake up, neourologically speaking, he would "get it". He is peeing, and his heart is beating! It is ONLY his lungs that are needing asssistance right now. Occasionally, he needs a little help with urine output and occasionally he needs a little halp to maintain blood pressure. I think of someone on dialysis. They have to go in every couple of days to have their blood filtered because their kidneys are diseased. Sometimes this disease is a fleeting thing, and sometimes it requires a transplant. That is Kidney as the primary problem. I also work with people in my physical therapy practice who have sustained sever brain injuries. They pee regularly, their hearts beat fine, and their lungs breathe in and out all day long. Their Brain is the primary problem. You can formulate your own example where the Heart is the primary problem. Well, just think of it as Jake's LUNGS are his primary problem! This is why we have to pray hard for them! When they are "well", he should be able to wean from the vent. In the meantime, he is immobile and he is gathering fluid, (along with lots of meds), so his kidneys and heart take a wallop, but they are still working! This is why we can't forget to pray for them too! Not to forget Mr. Liver who processes the majority of the meds and the blood products that Jake gets almost daily. Speaking of blood products, Miss German donor has her physical tomorrow. This is to prepare her for taking the G shot and getting her marrow ready to send stateside! Pray that her physical goes perfectly, and this process is not delayed! Jake has a skin rash that no one is quite sure what to make of . Some have said an allergy to tape (?!) and some have said possible graft vs. host disease. I continue to say bring it on, in a SAFE level, because I am claiming a little graft vs. tumor too, so that WHEN (k!!) his lungs are ready, he will ALSO be cancer free! Heather, may I say, your scripture choice tonight was superb!I LOVE Phillipians, "Do not be afraid about anything, but pray about everything, and in all things give thanks." LOVE IT! Has long since been one of my favorites. By the way this is how I paraphrase that verse so I can quote it quickly for POWER in many circumstances! ALso, Lori Ware, when I came tonight, Staci was reading the prayer you posted over Jake, and I joined her with a great big AMEN on the "long life" part! Cathy H., you big ol J4J'er, welcome aboard the Believe Express! Glad to have you.

To all of you who continue, day after day, to support the Raborns, and especially Jake, God bless you!! Thank you! MO


Day 734 fighting this horrible disease.
Day 57 during this inpatient stay.
Day 13 on the vent.
What does this mean?

1 amazing little boy who refuses to lose. He will win this battle against this disease and go on to lead a wonderful life. Staci and I have never doubted Jake in this battle. He has shown us time and time again that he can handle it and we will never leave his side.

Medically, Jake had a great night with all vitals well inside the normal range. His sats are looking great and his kidneys have kept up. Sunday was a day of rest(how appropriate) for Jake and we hope today is a day of progress. It is a very slow process to get him well but we are headed in the right direction. Each time they "flip" Jake, he has gained ground.

He looks so peaceful lying there. I'm sure he is dreaming of all things he is going to do when he gets out of the hospital. He will be well rested and raring to go. Personally, I can't wait to hear his voice or see his beautiful baby blue eyes. What a great day that will be.

Once again, Staci & I are overwhelmed with the support that each one of you have shown for Jake and our family. We keep saying it over and over but we really could not do this without you. Jake's Believers are amazing and growing in number everyday.

Believer's Project for the Day - Tell one new person about Jake and ask them to pray for him. Could you imagine what that would be like? Double the prayers for our warrior. That would be so awesome. Tell them a miracle is coming and they don't want to miss it.

The Believe Express - Powered by prayers and driven by Jesus is coming. Make sure that you're on it!!!

BELIEVE,
Don

Saturday, June 3, 2006 11:48 PM CDT

I just got through catching up on the entries. Yes I read aloud every prayer that was prayed for Jake. I also sang a few hymns. Thank God no one else was able to hear my beautiful voice. Jake is holding steady. The oxgyen on the vent is down to 55, and he is stating at 95. The map has not been changed it is still on 21 and from what Dr. Lama said she will keep it there for the day for some much needed rest. His blood pressure has gone up and down and needs to be added to the prayer request. He gets meds for lowering it and then some to bring it back up.Right now it's holding pretty steady . Pray it stays that way. Sorry for no update lately but, Overall it's been a pretty restful night for all of us. Lord knows we needed some. Please keep the prayers coming I love to know you are out there. I love reading about all the prayers being sent up on behalf of my precious baby. It makes me feel covered. Like there are angels flying all around us all day long. You are making a difference in my childs life. Thank you so much for taking the time. Now let's storm Heavens gate.
BELIEVE
Staci
I forgot to mention his blood gases look great and even though he is needing a little help, his urine output is good.




Well, ol' MoMo is about to hit the road and go to the Target House. Don and Staci are piled up in two recliners next to Jake. For a visual (as requested)for Miss Jane, the ICU is a closed unit, meaning you have to buzz and state your identity for them to let you in. Then, they expect you to go straight to the room of the one you are visiting, and not hang out in the main ICU area due to confidentiality and such. Anyway , Jake's room has a window and it faces the very front door of the hospital, so every night when I am leaving, I turn, hold my hand up toward his room and offer prayer for his safety. Staci and Don have assembled a couple of recliners; one decent and the other not so much, which they sleep in. Every ICU room is allotted a parent room in which to sleep, store personal items, etc. This is outside the ICU, down the hall about 50 feet from the ICU door (and 125 feet from Jake's room). There is a little vinyl loveseat that allows the trundle to pull out and become a little longer. Staci puts an egg crate on it and sheets it up to make it more tolerable. Although, lately they only take turns for daily naps in there. Just outside the parent rooms and across the hall is an ICU waiting room. This has been our "den" for the past two weeks. It is also the surgery waiting room, and since lots of kids can't have food prior to surgery, food and drink are prohibited. However, since we are never here until noonish (due to our weird hours), most of the surgeries are over by then, and we can have our supper on the pediatric sized table in the middle of the room. This is where we work puzzles, make jewelry, play computer games, and check the internet all day long! There is a phone in here, and I welcome your calls. 901-495-4050 My husband, Todd, left today, so I am the only "visitor". Three people in the room with Jake is really too many. There is a little tv mounted in the waiting room and in Jake's room. However, Don decided to let some Air Supply soothe Jake today! Mishka, Don was jazzed to get a present sent to HIM, and especially that someone took the time and effort to recognize his love of soft rock! Staci LOVED her shoes, and she opened them in front of the nurses, who all want some now too! Needless to say, the rest of your gift was MORE than generous. Thank you, thank you, thank you, for allowing me to be here by covering my patient load at work. That is the best gift anyone could ever give me!

I have been careful to not open the gifts that had stacked up at the Target House for Jake. He still has his Easter basket unopened, because he has really not felt good or been able to enjoy anything since Easter. However, there were a few new packages, that for one reason or another I felt may not be entirely for Jake, so I opened. In other words, if I haven't acknowledged your gift, it may have not been opened! Miss Belle Holden, everyone now has a "lucky buckeye" in their pocket. I was painting pendants tonight, and I even painted "BELIEVE" on a couple of buckeyes and gave them to the Pierces who came by for, like, the fourth time this week. They are so good to us. They are definitely like family! In fact, Kacy Acree, set up a massage for Staci tonight, and Kim, a local massage therapist came, table and all, to the waiting room and gave Staci some relief. Dawn came in, with Staci piled up under the covers, and she and I proceeded to eat our supper with Staci lubed up and receiving her treatment! Now, THAT is family! Also, Angel Penni, the popcorn arrived, and what a thoughtful gesture. This was perfect, as you can only imagine the snacking that goes on when nothing else is! Same to you, Brian Sullivan and Mrs. Sullivan... I KNEW there was something special about you the day I interviewed you. I told the office manager, he is from "good people". I could tell it in your gentle spirit and good manners. Mrs. Sullivan, you should be so proud! Your gift basket was really so sweet!

Now for the prayer requests for tonight, for the vigil restarting tomorrow, and for Sunday School tomorrow,(are you reading Karl and Mistie?!)

1. Kidneys to keep on functioning without need for medical assistance. (Jake's teetee has slowed down a little from the gang busters he was doing a couple of days ago. But, the amount is still sufficient to go without meds. We are starting to see a little puffiness though.)

2. Lungs to HEAL and be strong enough for an easy transition to the normal vent. (Right now, Jake is making slow and steady steps toward this. He requires less pressure to push the oxygen in and les oxygen in general to keep his body and organs and such oxygenated. The primary problem at this point is that the carbon dioxide that he should be breathing OUT is hanging around in his system too long. So, we need this to get on out so he will not be acidic which can be potentially dangerous. We also need his lungs to be good and strong so they won't have the potential to "pop" again, like they did before on the normal vent, as this is life threatening.)

3. GVHD to be mild and not harmful to Jake's progress. (Since Jake's bone marrow transplant, we have always been told to hope for a little graft vs. host disease, but not enough to cause problems in the skin, gut, lungs, or liver. He is demonstrating a little rash again, and we are using steroid cream to combat it. We can't know what exactly is going on inside him as he can't tell us if his belly is acting up again. We DO know that 129 days is the average time for bone marrow transplants to work in kids with solid tumors, like hepatoblastoma. Jake is in the low 100's. So I am claiming that this mild skin rash is a sign that the bone marrow is at work again, on the tumor, so that when he is done with this "rest", he will be cancer free.)

4. Bone marrow to arrive quickly and easily, and that it settle into Jake with no complications, then goes to work on killing any little cancer cell left anywhere. We ask blessings on his donor too. This is a painful procedure, and she did not have to say yes to doing it again!

5. Fungus to be gone! One of Jake's lines grew the fungus, but it took seven days to grow (as opposed to the four hours a little over a week ago.) Jake remains on anti-fungals, but at one point he had too much fungus for it to touch it, thus the respiratory problems, the vent, and the granulocyte therapy. It is much more suppressed, but we want it to be GONE! In light of having no white cells for protection, we do NOT want it to have any chance of a foothold.

6. NO bacterial infection. Jake's line also grew a new bug today. I think it was a somewhat common one, but again, with no immunity to help him, he is totally at the mercy of the barrage of antibiotics he is presently on. Come on bone marrow! Step it up a knotch.

7. Rest and rejuvenation for Don and Staci. Today, Staci woke up and said that for the first time in almost two months, she actually felt the sleep deprivation. I guess she has been running on adrenaline. Don is looking pretty worn out too. They both seem to have a peace, and both of them have their heads down and battle gear on for the duration of the battle! I know, though, that a little prayer could be just what is needed for them to get their second wind.

8. Of course, I pray for Jake's earthly healing. This means that when all this is said and done, Jake's scans will show NO tumor in lungs, liver, or brain! His AFP will be normal. He will have some therapy to do, but oh, won't that be fun for me to get to see my main man everyday! Once rehabilitated, he will be full force, no limitations, active, healthy, happy, and full of life! If we are expecting this miracle, let's expect it in totality! Let's not put ANY limits on God.

Thank you to those of you who joined the prayer vigil. It seriously brings us great comfort knowing he is covered. Please feel free to print these prayer requests out and take them to church with you. These are eight "simple" little things that can change one kids life! MO

Friday, June 2, 2006 11:19 PM CDT

3:15

OK, JODI JOHNSON, YOU ROCK!! WE NOW HAVE A WAY TO EXTEND THE PRAYER VIGIL..... Jodi has found a way to keep it going. Try this: www.geocities.com/jodijohn22/prayforjake1.html

If that doesn't work, email Jodi, and she will put you on the chart. asjohnsn@midsouth.rr.com

Also the mentioned meeting next Wednesday at Drew school is at 5:30pm. This is for anyone interested in helping with the spaghetti lunch or selling tickets. Also, Tracey asked me to mention that if you would like to buy a ticket, contact her at tmoncrief@opsb.net

I remember a pastor from West Monroe giving Staci a hundred dollar bill and saying, "I want to sow into this miracle." I thought that was a cool thing to do. Think of how you are all sowing into Jake's miracle by praying and spending your time before God on behalf of Jake. You will receive your blessing.

Jophie's mom, thank you for the wonderful prayer. We KNOW you have been there by the things you mentioned in your prayers. We are grateful for the speicificity in your words.
You should all know that Staci reads every prayer that is put in his guestbook right over Jake. As he lies there, he is hearing your words as they are again lifted up to God.

Piper, thanks to you for the reassurance that Jake is hearing us as we talk to him, bathe him, commend him and tell him we are here. Also, to know that he hears the prayers Staci is reading over him is comforting.

And one more thing... Mrs. Brenda, WHERE have our hymns been? Staci and I got into a little habit of singing them when we were reading them. With all the contemporary services these days, it was nice to remember the oldies but goodies! Send us some more.

Jake is now on his back and doing pretty well. They had to increase his pressure to 20 (which isn't a very big or drastic jump) and his O2 is on 55 percent. It was up 70arlier, so he is on his way down. Kidneys continue to rock on! Thank you, Jesus. his skin rash is a little concerning, but we are claiming that it is light GVHD which is also a big fat dose of GVT (graft vs. TUMOR!) so that when he gets off this vent, he won't have Cancer to deal with anymore! Amen?! Mo



Update 11:00am
Flipper is on his back again. He will take some time for sats to line back out but it is looking good so far. His nurse today is Nicole and she is doing a great job. She is very attentive and spends alot of time doing the little things that can go unnoticed. Keep praying.
Don

Update 5:00am
Sorry I have not updated hourly but it has been so peaceful and nice in here that I turned the computer off and sat here. I have Jake on one side of me resting and getting stonger so he can continue to fight and I have Staci on the other side of me in the recliner resting so she can help her precious warrior. They both mean the world to me and it is so calming to see them resting peacefully. Jake is really cruising tonight as his oxygen sats read 100 percent. Your prayers are what has put them there so keep it up. Expecting a great day.
Jake's Dad and Staci's Husband


New page... if you missed the update earlier today, check the journal update.

Now, I must admit, I have been a little nervous about our prayer vigil ending. I just sat back and WATCHED the Lord move when the masses started praying and publicly acknowledging HIM. From just about the moment the prayer vigil started, the turnaround began! However, we KNOW that it is not a grid that is healing Jake. It is our prayers! If you feel so led, please just log onto the guestbook and say, "here I go" and ask someone to join you. Don just said, "Tell them that I will be up all night long, so tell them to just log on and tell me and I will join them!" I have really liked seeing people call out prayer partners on behalf of Jake. It has brought us so much peace, and we can never ever thank you enough for what you have done for Jake. We are careful to recognize that it is Jesus and His healing blood that all the credit goes to.

Tonight I was watching a Christian station (TBN?), and they had a segment called "Primary Focus". It was a story about a little girl with a heart and lung condition, and they showed her on the vent. They interviewed her mom, dad, and uncle, and talked about when they had "the talk" with their doctor about the prognosis being bleak. They went on to talk about the huge amount of prayer that was going up for their daughter, Lindsay. Lindsay actually found herself on a vent a couple more times, and in a couple of dire situations, where the parents were told she would likely not return (i.e. surgery). Her parents realized when she kept coming back over and over that the Lord was holding her up. They came to realize that their faith was what was sustaining her. The uncle said, "Do you think the Lord wants us to EXPECT a miracle?" And the mom said, "I think the Lord expects us to have faith!" Well, Believers, I have seen some faith on this website, amen?! I get a blessing every time I am reading the guestbook! I can tell there are many, many others who are blessed as well.

Lord, we have watched as your POWER has been shown through Jake's improvements. We know we are not worthy of such mercy, and praise you, Lord for you grace. Thank you, Jesus, for letting this journey enlarge our family. Thank you for your love, and for giving Jake the will to continue fighting, when we can't talk to him at all. We TRUST that you are talking to him constantly. Thank you for sending your angels to keep charge over him, with their wings spread keeping the germs out, his body heat in, and nurturing his little kidneys while stroking his lungs to healing. We ask for a smooth transition as preparation is made to try weaning him from the oscillator to the regular vent. We ask you to let him remain stable tomorrow when they flip him back onto his back. Let this stability prove to the doctors that he is ready to come off the vent. And, Jesus, please whisper words of comfort in Jake's ear as his consciousness is returned, and his fear is made known from the tubes in his mouth and nose. Give him peace, and give his mom and dad the words to keep him calm and still. Bless Jake's donor and his prayer warriors, Lord. Please continue to keep him infection free, fungus free, and keep the GVHD at bay. Thank you, Jesus for hearing our prayers.

Jake's vent setting is on 18 MAP (pressure). His O2 is at 45 percent. His kidneys are rocking! No diuretics necessary. He looks like he has a little GVHD on his skin, and with the big BM he had today, I am hoping that was not a sign of GVHD of his belly. Praise the Lord, he is NOT hurting! If his vitals start looking like they are going up, and he could potentially be hurting, they give him a boost of pain meds since there is no way for him to communicate.

Now a little info about the upcoming fundraiser. My good buddy, Cindy, is heading up another chicken spaghetti lunch. We all like this idea, because people who give will get something in return. The lunch will be Friday, june 23rd from 11:00-1:00pm. There will be two locations for pick up. The West Monroe location will be at West Ridge Middle School and the Monroe folks can go to North Monroe Baptist Church. Delivery will be available for large orders. If you are interested in helping, there will be a meeting at Drew School on Wednesday, June 7th ( I am assuming evening, but will get you a time later). This is where the tickets will be dispersed, so if you would like to nab some to help sell, please be there. Cindy has jobs for all kinds of people. They will need delivery drivers, people to help serve, and people to cook the sgetti! If interested or if there are questions... call Cindy Foust at cell: 318-372-2762 home: 318-397-8840 or Tracey Moncrief cell: 318-805-2045 home: 318-397-4440
Eddie, Marina, and Bonnie will probably be running the Monroe show.

Well, I know I don't have to ask you to keep praying, but I just want you to know, that I have seem more results in Jake's medical condition since you have been focusing your prayers in the vigil than with anything else that has occurred for him with medical intervention. I am very, very grateful for our doctors and nurses, but I also know that you are all praying for them, and God can give them supernatural wisdom for guiding the subtle decisions and changes that have happened in the last few days. Dr. Raja told us he was praying for Jake. You gotta love that!

Carrie Barnes, I am not able to email from here, (so to all of you waiting on a response, sorry!), but I think the ball tournament idea was cool! It is people paying for something and getting something. Let me know how I can help. Since I can't email any responses, anyone who needs me or any of us, can call us in the ICU waiting room 901-495-4050. MO

Wednesday, May 31, 2006 7:56 PM CDT

2:25pm
Hello everyone. WHen I got to th hospital this morning, Jake's vent was on 19 for pressure, and 45 percent O2. He has since had it turned down to 18 for pressure and 40 percent O2. We breathe 21.5 percent O2. So, Jakeman is getting closer! The pressure they expect him to be at prior to changing from the oscillator to the normal vent is 18. Can you see that we are ALMOST ready for the big switch. Transitioning from one vent to the other can be a challenging time, so if you don't mind, Shug, Barbra Manning and Charlen Floyd, please add that to your immediate prayers. We need Jake's lungs to tolerate this new lower vent setting, while keeping his sats up (presently at 97 percent!!). We need him to smoothly and safely transition to the normal vent. And we need his kidneys to remain strong and healthy. Jake is reaping the reward of your faithful prayers. Our Lord is watching over this special child, and He is laying his healing hand on him. His kidneys continue to functino well. He is no longer in a "crisis" situation with his kidneys, but of course, we give glory to God, and remember to never get complacent. Jake gave his nurses a big surprise this morning in the form of a big ol' BM! SURPRISE! Thank you for continuing to pray for our Jake. Jin is heading home this morning, as she woke up sick yesterday, and feels this would be the most optimal time to clean out her desk and such since she neglected that to come straight up to Memphis after her retirement party. She'll be back soon, I am sure. Hunter caught a ride home with Mr. Wayne Petrus on ANgel Flights, along with Gregory Allen and his mom, Sarah. He should be home in time for his game tonight! Thanks guys! Mrs. Fay, thank you so much for the YUMMY Outback dinner last night. It was AWESOME! We were the envy of the inpatients! You are so sweet to our family! And to Cindy and LeAnn Rushing for being dedicated to Habitat for Hope and being the servants they needed last night to deliver our dinner. You are fab!

We'll keep you posted with any changes. Also, I will be posting some info on the upcoming fundraiser in Monroe/West Monroe later this evening. MO

9:30AM
Just me & Jake hanging out watching the news. He is still looking good on his vitals and labs are good. Please check on fl/jacob and join them in their prayer vigil. The prayers are working. I wish all of you could be in this room to witness the miracle that is my son.
Don


4:45am
Jake is rocking along tonight. His vitals are perfect and vent settings keep going lower. His labs need a little adjustment but they believe this is due to his urine output which will not slow down. He is an amazing fighter who refuses to give up.
Don

4:00pm
Jay George and Dodd Hartness, guess what?! While you were praying, Staci and Don were asked (again) to go meet with the docs. This time it was to say, "we don't exactly know why, but there has been a change in a positive direction." Of course, there was the time that they had to clarify that "we still have a long road... but things ARE looking a better." They checked his level of inflammation (is that cytokines, nurses?) and they are considerably lower than yesterday. We are claiming that as NO "acute respiratory distress syndrome". The oscillting vent does just that... it oscillates!! You can put your hand on Jake's back or chest (depending on where ol' Flipper is), and you can feel a thump, thump, thump, very rapidly. It is not a normal breathing pattern. Therefore, he will have to be transitioned from the oscillator to the normal vent prior to being weaned to nothing. The normal vent is like what you see on the Lifetime channel on dramatic shows... the body moves slowly up, then slowly down. You can hear the in and out breathing sound of air being pumped in/out. The oscillator sounds more like a helicopter...really! Obviously, if the plan is to take him from vent to breathing on his own, then he has to feel "normal" in/out breathing so they can slowly decrease the oxygen support until he is on his own! Today, the new doctor taking care of Jake (Dr. Lama) said she intends to really get down on those vent settings in the next 48 hours while he is on his belly (since that is where he tolerates step downs better), so that when he get back on his back on Saturday, there is some room for increasing if necessary! We believe it won't be an issue. She is planning to have Jake on the normal vent by "early next week". That is so, so awesome. This is the first time someone has actually had a realistic timeline and PLAN to make this drastic and very monumental step. As for his kidneys, Jake is responding beautifully to his new meds. The docs have totally turned off all meds required to help his kidneys. Praise the Lord, praise the Lord, Praise the Lord!! Now we just want to pray that they stay the course. He has both chest tubes out, so this lessens the potential for infection. The stomach tube is still draining, so it has to stay in a while. Hey, I will update the prayer list later, and I think we will add this tube come on out. Jake looks more like himself than he has in a week! His swelling is much less significant! His color is better. Those angels are all around, beneath, above, to the right, to the left, ahead of and behind Jake! (I like that mental picture, but can't remember what it was called... you know who you are.) ALL of this improvement has occurred since initiating the prayer vigil! WE BELIEVE IN THE POWER OF PRAYER, and the POWER OF GOD!

Dotti and Larry, I bind with both of you as you pray for Jake's healing. I have your handsome son, Todd, here with me now, so all is right in the world. Mo


12:30pm
Cindi Gaskins, you get ready, girl, and Dena Olsens, a baby step occurred while you were praying! The nurse practitioner was just in taking out the OTHER chest tube, leaving him with NONE! Jake's vents settings are down. He is at 19 MAP pressure and his O2 is 50 percent...

Well, as I was typing, his heart rate started cascading and his sats were dropping right with it. This is such a scary thing.... Things seem to be levelling back out... They feel this is related to the fact that they just removed his chest tube. One nurse said he may have just wanted a little more attention. They gave him a little boost of pain meds, and he seemed to appreciate it.

Ok, back to the good news.. It really can change just about that fast. They are fixing to do an xray to see what is up. I will update again later. MO

9:30AM Update
Flipper is on the move once again. He is already on his stomach and loving it. His sats are high and vent settings are low. We are planning on great things today and hope you will stay tuned as the miracle is gaining speed.
Don


5:00AM Update
Jake is having a good night. His vitals are good. His vent settings are high but we have come to expect that on his back. He will do the flip again in just a little while. His kidneys have done well through the night and his swelling has decreased some. He is an amazing little man.
Don


2:15am
Jennifer Taylor and Stephanie Strom, Jake's mom, dad, JInJin and Mo are all still up. We are grateful for people like you who love Jake so much that you are willing to stay up and pray. Jake is resting and remains sedated. Staci has been up and monitoring all his "lines". The nurses gave her permission to suction him, so now she is "ICU" certified! She gets the urine all drained down into his bag so she can keep up with his output. She knows that Dr. Raja wants at least 80ccs per hour, so she is "ON IT"! SO far, so good. Jake is doing more than expected, but not excessive. They have him on a drip to help with this. She tells me, "get me a cup of water." Then she grabs that suction and goes to town on suctioning his nose and mouth. She also keeps his lips salved, his skin lubed, and Karl, you would be so, so proud of her positioning protocol. She has a collection of baby blankets and pillows that she uses to keep pressure off Jake's heels, hands, and even keeping his legs rolled in vs. flared out. She really is doing great taking care of him! The docs are trying to take a load off his kidneys by backing down on more of his meds. Jake will have two less antibiotics, so we need to continue those prayers regarding any infection since he does not have any white cells for "defense"! But, now the countdown is on for new marrow... only 13 more days!

OH, and let me be the first to say... today is Jake's hepato anniversary. Maybe Staci or Don would like to tell you more about that fateful day later. For now, God, please bless Jake tonight with restful sleep and healing breath. Give your angels charge over him; under him, to his right and his left. Go before him and behind him, and protect his organs from damage. We give You the glory for any and all progress we have seen. We thank you for the work being done in Jake's life. MO


9:25pm
Mugs Cheek and Kim Boyd, Hello there. I want you to know as one of you are finishing, and the other is beginning that Staci just came into the waiting room and told us that the new medicine they are using to help Jake rid his body of the extra fluid and boost his little kidneys is working great! He tinkled 200 ccs in 1 hour, whereas he has been averaging 100cc per 2 hours! His eyes are also much less swollen. This brought Staci much relief. It is hard to see his eyelids so swollen that they can't be pried open! I want to be careful to continue to give praise to God for EVERY single little change that brings Jake a step closer to healing. Be encourgaged.

Also, there have been so many people who say they wish they were able to get on the vigil list, and there have been so many cool reported experiences that occurred while people were praying for Jake. I, personally, have liked being able to look at the vigil list and call out BY NAME the person with whom I am praying. It connects me with them on a personal level and makes it CLEAR that there are "two or more gathered"! If you would like to do the same, before signing the guestbook, check the time, then check the prayer vigil list, and NAME the person you are joining in prayer for Jake.

Thank you to the Ford and Bourland families who provided us a big, fat Chik Fil A lunch today. It was so nice to not have to coordinate menus, orders, then haul it all back. We really appreciate it. Also, Mrs. Joan Boyer (who STILL has Hunter!) sent over a batch of red beans and rice from the Ronald McDonald House where they are living. Her son, Spencer, and Hunter have hit it off sa new buddies. THey are at a Drive In movie tonight. www.caringbridge.org/visit/spencerboyer

Oh, and Sarah... from either Wisconsin or Minnesota (we have been arguing that point all day... please clarify), Thank you for the pizza last night. That was a cool idea! I guess there are Domino's everywhere!!

Our night nurse is Alexis. I like calling them by name in my prayers. They plan to keep Jake's O2 pretty high tonight while he is on his back so they won't have to adjust the pressure and lose some ground. They want him back on his belly once he has had a little back time.

To God be the Glory... today was better than yesterday!! Mo

7:56pm There has been lots of new info today, so if you missed it, check the journal history. We just need to clear the page from time to time.

Denise Yates and Annette Darden, I bind with you in agreement that Jake's lungs will show considerable improvement. Also, that the Lord will touch his kidneys with the recent change in meds, showing a considerable improvement in his kidney function. We want to see his BUN, which is a kidney level, drop.

Jake just got himself ANOTHER line! He got a new IV in his other foot so that they could dedicate a line to epinephrine, which is being used to bring his blood pressure up a little. It seems to be working. He worked through another flip and is now on his back. He just has more trouble when on his back, and was on 50 percent O2 support on his belly, now is at 92 percent on his back. Pressure is still at 20, but he is at risk to have it turned up if he doesn't start showing better sats soon. He is holding at about 93 percent oxygen saturation, but it needs to climb in order for them to NOT adjust the pressure downward. We NEVER want the settings to go up... only down!

They are trying to change his meds around a little. For instance,since the fungus is gone in his bloodstream, the option to dismiss one of those meds can now be considered. The nurse just explained that they changed a med to a stronger one to help get the fluid off him, but by doing so they could drop two. So tonight should be an evening of lots of little changes. Hopefully all positive.

We will be keeping you updated with any significant change. MO

Tuesday, May 30, 2006 5:34 PM CDT

3:25
Misha Hahn and Kristi Granier, while you were praying the doctor came in to tell us that the fungus is GONE from the blood stream(It is still in his lungs but being gone from the blood stream is a miracle in itself.)! There has been four consecutive negative cultures, so his particular services are no longer needed. Hallelujah. I am going to continue to update you all of the steady improvements that we KNOW are a direct result of prayers and the Lord's healing touch. Missy Short, please continue (also Donna Griggs...hey, CUZ!)to focus your prayers on Jake's LUNGS to heal for weaning of the vent and his KIDNEYS to kick it into high gear to process all the meds needing to have byproducts excreted.

Uncle Todd just made it here, and we are awaiting the arrival of mine and Staci's Poppa (our grandpa who is a Southern Baptist preacher and brings us much peace) will be coming in any minute now.

Praise the Lord.... the prayer vigil s having an impact. MO

k1:25
Mistie Caples, while you were praying, we got word that a donor would be imminent. How do you like that for answered prayers? Sarah Brooks, we bind with you to agree in Jake's earthly healing, and ask you and the others this afternoon to add that Jake's kidneys stay strengthened and resilient with the amounts of fluid, blood products, and meds they are having to process.

Be encouraged... I came in this afternoon to see Jake's O2 setting at 50 percent and the vent pressure down to 21. (From 100 percent and 24 yesterday). This has all happened since the prayer vigil began. Hallelujah. Jesus, give your angels charge over Jake. Keep him safe until he is safely breathing alone and has new blood cells to use in his battle. MO

1:00
Just got word, The donor said YES!!! Thank You Jesus for yet another answered prayer. She will have her physical on the 6th and donate around the 14th. Please pray that Jake is off the vent and his lungs are ready. Keep this sweet woman in your prayers. Staci


12:35
For those of you who are signed up for the vigil and for those of you who are praying on your own, I have an urgent request. They just told me Jake's kidneys are taking a pretty hard hit. Please add that to your prayers. He said he didn't think going on dialysis would be an option for Jake. Please keep him covered with this prayer, WORKING KIDNEYS!!!!!!!! Staci





UPDATE 10:40AM
Jake is on his lowest vent settings yet. He is now down to 50 percent on the oxygen. His sats are holding very well. He has not had a positive blood culture in 4 days which is awesome. He will have one of his chest tubes pulled today and "Flipper" will flop on his back later today. Pray the flop goes well and Jake will tolerate being on his back again. I'm off to bed. I will try to get someone to update this afternoon. Keep the prayers coming.
Don


UPDATE 9:20AM
Flipper is cruising along this morning. Vitals are really good. Labs are decent for his condition and his blood gases are improved. Please know my hero is fighting as hard as he can. I'm so proud of him(proud of all my boys). Stay tuned as a miracle is forming.
Don

UPDATE 6:00AM
Very peaceful last couple of hours. Just me and Jake hanging out talking about what we're going do when we get out of the hospital. No labs or x-ray results yet but will let you know soon as I hear.
Don



UPDATE 4:00AM
Quiet hour. Blood pressure was a little high so they gave hime some medicine. Other vitals are stable. Labs and x-ray in the next couple of hours. Pray that they all show improvement.
Don

UPDATE 2:50AM
Flipper is doing very good right now. His vitals look great and his vent settings have been lowered. He is such a fighter and working very hard. The prayers are working. BELIEVE.
Don


Wednesday 1:10AM

Nancy Head, know that in this hour, I am joining with you to claim a victory over this disease and to call out to Jesus to save Jake. Betty Wharton, I will be agreeing with you during your prayer time too. Where two or more are gathered... I LOVE the list, because as I pray, I know who I am "gathered" with in prayer.

Let me tell you... Jake's pressure has been backed down again to 23. His O2 is at 60 percent. These are small changes, but we are headed up that mountain! That kid is so tough!

It continues to be an absolute miracle that Jake can have all those tubes coming out of him or going into him and no infection! I want to keep praising God for that and let it be known that for a week in this condition, to have no fever and no infection is a MIRACLE! He is not producing any blood cells on his own. He has to have daily platelet transfusions and red blood cells about every day or two. We REALLY need those white cells from our donor! Jake is a strong, strong spirit! Mo

All I can really say is "WOW" to all the unbelievable response that has come for Jake's prayer vigil. I want you to know that it is shaping up in perfect timing. Jake's vent settings have been steadily turned UP today. He has been on 100 percent oxygen for the majority of the day. His vent pressure was also increased to 24. It was as high as 28 in the first days of the vent to 20 two days ago. Going to 24 is definitely in the wrong direction. In fact, the doctors have decided to suspend the granulocytes due to its increased risk to the lungs, and they cannot do anything to help the most immediate situation which has now been labelled "acute respiratory distress syndrome." It has been hard to describe these things to his brothers. I just keep making sure they are aware of the "seriousness" of the situation, and they always say yes. Hunter has been at the zoo with another St. Jude patient from Louisiana, Spencer Boyer, and his mom, Joan. Thank you, Joan. You probably had no idea when you took him off today what a blessing that would actually be. We just sent Hayden off to the airport with Aimee and Allen Smith. We were trying to figure out how to get him home, as he decided he wanted to play ball Thursday night. Aimee came up to check on us, and offered to chaperone him this evening. Just to tell you how committed all these parents are to each other, she saw Hayden't struggle with leaving and told him that as soon as his game is over, she would turn around and bring him right back to Memphis Friday if that is what he wanted to do. I think that really helped him make his decision. Hayden went back to tell his mom and Jake goodbye, and he had a very hard time pulling away. He and Staci were both visibly upset. I talked to Hayden about the power of God, and that if He chooses to heal Jake, it will take nothing more than a touch of His hand. What more can I tell him to soothe him?

Staci and Don had a meeting with the doctor this morning, and all Staci has been able to tell me is that "the hill is getting steeper." She has been quiet and reflective today. It is just a very serious time. The prayer vigil could not come at a better time. I am amazed that it is coming within an hour or so, and this is when Jake is more critical than he has been in two years. He CAN turn a corner.

It was agonizing to see Jake being bagged a while ago, when the decision was made to try to suction him to see if he was "clogged" since the sats wouldn't stay up. They have to turn off the ventilator and hook him up to an ambu bag like the ones used when someone is being resuscitated. She would have to stop and reach for something or change her position, and there Jake would be lying... breathless. It was gut wrenching. Staci probably just sat ther holding her breath. Mom cried. And I sprang to action. I put my gloves on and tried to help lift him and position him. Maybe acting on the "medical" side of things helps me distance myself emotionally from what was actually going on. In the midst of all that, Jake had dirtied his diaper and the mess was all over the dressing and insertion of his femoral line (aka "lifeline" since it took the lplace of his other buddies). Nicole, our awesome nurse, KNEW this had to be changed regardless of the effort it would require. Jake was off the vent for probably 20 minutes or more. Uggggghhh!! It seemed like forever. He is back on his belly, and we are hoping to see those vent settings going back down.

For so many who will be praying continuously, let me do my best to provide a list of prayer requests...
1. Jake's lungs to HEAL and take over breathing.
2. Fungus to miraculously GO AWAY and the lapse of grannie cells will NOT hinder progress against the fungus.
3. Fluid will decrease for comfort, appearance, and physiological balance.
4. Jake's skin integrity will remain good. He isn't moved much at all, and he cannot take the additional stress of a sore or potential source of infection.
5. That the docs are fully aware of the BEST steps to take in order to move those vent settings down (O2 and pressure), so that the next move will be onto the typical ventilator.
6. Wisdom and quick responses for Jake's medical team... Doctors, nurses, and respiratory therapists.
7. Peace and comfort for Don and Staci as they obviously face some of the scariest time of their entire lives. (and Mo and Todd, and Jin, and Pops & Nana Massey, and PawPaw Raborn, and Uncle Eddie and family, and Aunt Bonnie and family)
8. Marrow to get here soon for a boost to Jake's immune system. Until it gets here, NO bacterial infection to set in or take hold.
9. That the entire family continue to rely on faith and be upheld by the knowledge that we are Christians and that we KNOW that God's plan is to prosper Jake and not to harm him.
If I am leaving something out, and I know that I am, please add it, Bonnie or Eddie. I wanted to provide a long, thorough list in light of the upcoming vigil.

MO

Tuesday, May 30, 2006 2:08 AM CDT

11:00am update

"Flipper" is back on his belly and loving it. His sats are 100 percent. They will slowly turn vent down some thru the day to see where he stands. He will NOT receive his grannie cells today as the medical team needs him to rest.

Please look below Jake's slide show for link to Jake's prayer vigil. A huge thanks to Habitat for Hope for putting this together. Please click on their logo to learn more about this amazing organization.

BELIEVE,
Don


7:50am Update

Jake has struggled through the night and all of his settings had to go up on the vent. His blood pressure is really low so he is being given Dopamine as I type.
Please Pray.
Don


Hello everyone... coming to you LIVE from the ICU waiting room! Bet that surprises you! The wild hooligans are beginning to treat this place like home. I dropped them off this afternoon at 4:00pm, and went back to a mandatory family meeting at the Target House. When I got here around 5:30, mom and Staci didn't even know they were here! They just romp around and usually end up in the computer room. Our days and nights are DEFINITELY screwed up! The boys finally got up at 12:55 this afternoon, but could now go until 3:00 or 4:00 without blinking!

The Jakester is going to be flipped again tomorrow! They were making a little surge toward the homestretch while he was on his belly, but sinve being on his back today, things have gone a little backwards. He just seems to breathe better on his belly. Kacy, I don't really know why, and don't suppose anyone else has more than a guess either, but since progress was being made in prone, tomorrow he is flipping back over. His oxygen is at 80 percent assistance, and the pressure to push it in and expand his lungs was increased from 21 to 23. I don't know the units! He was at 28 just a couple of days ago, so all in all, we are heading in the right direction.

Now...for clarification. Don's struggle with going back to work was an INNER struggle! he kept telling Jake bye, then telling Staci he was fixing to go, then he would have a meltdown! That was a pretty good sign that God was working on him to stay, don't you think?! He finally called his boss, Ernest, who told him that his job is not in jeopardy, but of course, he will not receive pay. That is all that Don hoped for. Thank you, thank you, Ernest Green. We will find a way to make it work. We have had several people call and want to know how to help. I expect we will be planning a fundraiser in the West Monroe area pretty soon to help with living expenses (still has a house note, car notes, etc.!!), so be watching for details on that. Also, I just want to add that Jake has long since had a medical fund, and info regarding that fund is on a link below. (I think...if not I will add it soon) The Jake Raborn Medical Fund is at Progressive Bank in West Monroe.

I want to remind you all what a little miracle Jake is. Do you realize that Jake has 8 tubes coming out of him and no immunity to help with preventing infection. He is clean as a whistle. I LOVE seeing his temp right in the low to normal range. God is all over protecting him. Every night when I am leaving the hospital (make that... every MORNING when I am leaving the hospital...), I look up at the window that I have new figured out is Jake's, and I ask God to send His angels to keep charge over Jake. I imagine them swarming around his window, hovering over his bed, and fanning their wings to ward away bacteria and infection. Jake is such a miracle!

Tonight we had a few visitors... Hanna Gibson's mom came to bring chicken, along with her sister, Pepper. hanna was a St. Jude patient who went to be with the Lord almost two years ago, I think. I never had the privelege of meeting her. I think her website may be cb/ms/hanna If not, I will try to get the correct one. Then, Dawn and Todd Pierce came up to visit. They brought homemade brownies with ganach(?!!) on top. Todd can make some bomb-alicious brownies! The Pierces also had a child, Shae, here in ICu at St. Jude five years ago. Can you believe the love that these families have to come back here and support families going through the same fight after losing their children? That is God's grace! There is absolutely nothing like the connection of families tackling this disease and challenge together. Thank both of you for giving of your time.

I believe Mylissa Horrocks with Habitat for Hope is working on a prayer vigil for Jake. It will be 24-48 hours, with 30 minute increments. She is planning a sign up sheet on her website to make sure Jake is covered all day for the next couple of days. We need to get him OFF this vent! I think you can go to Habitat for Hope at www.habitatforhope.org and look for a link for "prayer" or "prayer for Jake". If that doesn't work, please email her at prayer@habitatforhope.com She is organizing this, and I think it is an awesome idea! For all who may not know, Jake's tumor wsa found on Memorial Day of 2004. Then, a year later, he went into septic shock in Shreveport at LSUMC and almost died! We swore that the next Memorial Day we would try and be somewhere far, far away having a party. Well, here we are again, with Jake fighting for his life, and requiring a ventilator to breathe. Memorial Day is just not a fun weekend for us. I think it would be VERY, VERY appropriate for a prayer vigil to fall on May 31st and June 1st (date of diagnosis and first day at St. Jude) to cover him up in prayer. This will be a time to praise God for all that He has brought about so far and thank Him for all that He is going to do, and to ask God for a complete and total miracle that cannot be explained and that has wide reaching impact on all the thousands of people who have come to know Jake via this website!

I want to just thank you again for your support. It is awesome knowing that everything we could possibly do for Jake is being done... namely prayer! We will keep you posted as anything changes. Go ahead and pray for a smooth "flip" tomorrow morning. Mo

Monday, May 29, 2006 0:19 AM CDT

Update 8:00pm
UPDATE 3:00 P.M.
glad to report Walter made a GOOD deal on Deal or Mo-Beal!

Jake's oxygen was turned up to 90 percent. He just doesn't seem to breathe quite as well on his back as he does on his stomach. But, he needed a break. I, for one, will surely be happy when his fluid goes down! It is even in his face (a lot!). This too shall pass.

For the record, the Bible says "the faith of a mustard seed", and we have the faith of a whole bottle of Heinz !! So, jump off in that sea, mountain named cancer! WE BELIEVE!! Mo


Hello everyone! It's Jin again. Just wanted you to know that the "flip" has come and gone and so far, so good. Numbers remained stable and no reactions from our big boy Jake. I've been back there twice since the flip and he remains stable. However, the last time back there, his sats went down to 89, thus the machine started beeping. His oxygen was at 70, so they were going to punch it up a notch, but I don't know to what number exactly.

It is sooo hard to see my baby on the vent, sedated, and paralyzed. I know it's for his own good, but if I didn't have a whole lot of faith and a whole lot of hope, I know I'd never be able to see him without some tears. I just talk to him and tell him how great he's doing. I encourage him to keep fighting. I pray over him. I do not care how I look to others in the room. I even sneak in a soft touch and kiss every now and then, ignoring those looks I get from Staci and Don! Please keep the prayers coming. Each of us gets a lot of our strength from you.

Mo is taking the boys out to do something special today, perhaps the zoo. Anywhere will do just so long as it's away from here for awhile. So, I'm here alone in the waiting room. There seems to be no surgery today, probably because of the holiday. I'm sure tomorrow will be busier. Oh, by the way, I have to admit it's fun having my own computer. I don't have to worry about being timed out!

We want to thank two special families for helping us get through these long stays in the ICU waiting room. 1) the Beamons brought supper for us Saturday(?) night (the days all run together). We loved the chicken, the cheese dip and chips, the Chick-Fil-A tea, and the biscuits were especially divine--think Red Lobster! 2)the Horrocks brought Corky's ribs, pulled pork, and "fixins" the next night. Nothing but empty pans left! As Jake and I say: "Yummy, yummy, yummy for my tummy, tummy, tummy!" Before heading back to Florida, they even brought by food they had left over in their apartment--fruit, bagels, cereal, etc. Thanks again! We don't let anything go to waste around here.

OK, signing off now, so keep praying and believing!

Jin Jin


UPDATE 5:45AM
Sorry about no updates throughout the night but I fell asleep. Jake has been very stable and labs look really good. He is down to 63 percent oxygen on the vent. X-ray was just completed and hope to have those results on the next update.
Don

So sorry to all of you. We have just kinda hung out and chilled all day today. In Staci's words, "God rested on the 7th day, and so did Jake!" Dr. Raja has been pushing him as hard as he can to move toward weaning from the vent. Today; however, he chose to let him rest since he was really looking good. He plans to flip him back onto his back tomorrow. This will be a potentially dangerous time again, but Jake moved through the first change of position without a hitch. He has seemed to appreciate being on his belly. However, when he is there, there is absolutely no variety in his position. He is flat on his belly, head rotated about 45 degrees to the left, where it has been for almost 48 hours. Ugh. The PT in me cringes! The nurses do an awesome job of not only watching the "biggies" but also paying attention to skin, preventing stiff joints (where they can, like his ankles and hips), and slathering him with cream for his skin irritations due to radiation.

He is really having quite a problem with swelling! Because he has been face-down, the swelling moved into his face, and it breaks my heart that I can't even pry his eyes open to look at his baby blues. The lids are too puffy. Same is really true for his whole head. It has also been red/purplish with a definite change in color at his shoulders and the rest of his body. I am so, so proud of that little boy. His kidneys are still rocking on their own, as is his little liver. His oxygen is set at 70 percent, but that was only increased in the last little while! He has been at 60 percent all day long. They were able to turn off one supportive machine (NO2) without any change in his vitals. That is good! His blood gases are staying about the same, and his pH is OK. (This is the feedback I get from Staci!) His x-rays seem to be getting marginally better.

I hope you all know that besides getting over the whole "life support" issue right now, we still need to be looking ahead and praying for the donor to get that conviction, and thus the desire to send more marrow. Jake NEEDS immunity. Can you even fathom him going through all of this without a white blood cell source or count?! God is keeping his hand right on Jake. The fungus is still growing in the culture daily, but it is taking longer and longer to do so. That means there is less of it, so we are standing firm that those grannie cells are working.

I don't know what to say about ol' Don. He is struggling. He needs to be at work, but looking at his helpless son, and making the decision to go while he is still so acute, is unbearable. He is having a really, really tough time!! Pray for this to just work itself out. He is basically in a probationary period at his new job, so it is not just that he will miss his paycheck. That, we could somehow manage. It is that "losing the job" thing that has more of a bitter taste!

We had a Believer come and surprise us with a visit today... Vicki Price from Montgomery, AL, came by to say hello. She was in town doing an annual golfing shindig with her dad, and thought enough to stop in and introduce herself. How awesome to meet someone who is committed to praying for Jake. She even went into the ICU to see Jake and meet Staci. Thanks, vicki.

Look back to yesterday's journal for a printout of prayer requests. And add kidneys to stay strong, liver to stay strong, brain to remain strong, and for his immunity to supernaturally beef up. WITHOUT even needing the donor marrow! I BELIEVE this can be! Don't forget to add three things to thank God for where Jake is concerned!!
MO

P.S. Nicole, STAY AWAY FROM MY FLOWERS!! (Billy, please supervise her!) Mo

Saturday, May 27, 2006 4:02 PM CDT

Update 7:00pm
Just letting you know that Jake is having a very good day. His vital signs and labs are fairly stable. Will update more later.
Don


Update 9:00am
Nothing new to report since last update. His vitals are stable. I have not seen the doc this morning which I'm taking as a good sign. Pray for a peacful but progressive day. Keep checking in. I hope someone can update for me as I'm headed off to bed. BELIEVE!!!
Don

Update 6:30am
Labs look OK. I have not heard how the x-ray looks yet. Vital signs are stable and oxygen setting on vent is back to 60 percent. My heart aches beyond words to hold him.
Jake's Dad

Update 4:00am
Smooth and stable. Since the last update my little warrior has lined back out. His vent setting is now down to 63 percent and his sats are holding nicely. Morning labs were drawn and should be back in about 1 hour. X-ray is next. Pray it shows imporvement and that my man is improving. He is a true champion and will be back on his feet soon.
Don

Update 2:00am
Jake's blood pressure and heart rate are a little high so they gave him an extra boost of his sedation and pain medicine. He seems to have calmed back down. They went up on his vent settings a little just to help him calm down.
Don

Update 12:10am
Well, things have been really smooth sailing today. After the stomach tube this morning, Jake has really been draining a lot. I keep asking the nurses about this, but I can honestly say that I, personally, don't really get how this much cluid can be draining without a pretty good explanation. Oh well... His vitals may look as good as they have since the day he was put on the vent! He is keeping his sats at 97-99 percent! His heart rate is finally down in the normal range. His vent is now at 60 percent O2, but Dr. Raja has lowered the pressure (called MAP) to 22. It was 26 yesterday, and can only be lowered in really slow, single digit increments. Dr. Raja is a fairly aggressive intensivist, but also very attentive. SO, we are right there behind him! We like that he is pushing Jake toward getting off this vent! He is resting nicely on his belly!

Boy, did the boys ever have a good time with the Acrees. Thanks, guys, for getting them out for a change of scenery today. It was also so nice of some of Hayden's teammates to send him the messages on the website. I don't think he has seen them yet, but I plan to show him later!

Thank you so much, Piper for the story about your niece. I LOVE to hear stories about the vey clear and undeniable miracles that God decides to make known! We are Baptist, so this may be a little offbeat for us SOuthern Baptists, but because of the scripture in James that you referenced, I asked my pastor (aka "elder of the church") to come and annoint Jake with oil. He gladly obliged. I figure that there are some scriptures that are just plain straightforward and do not leave a lot of room for "loose interpretation". This was one that I felt was clear cut, so I obeyed! I didn't tell you all about this, but last night when we were holding hands and saying our prayer prior to the grannies going in, my dad said he got a tingle all down his spine. When we were walking out, he told everyone, "I just want you to know that you are standing on Holy Ground!" He said to me, "You know how sometimes you walk into a church and you can just FEEL the presence of the Lord?" He said, "Well, there is no doubt that the Holy Spirit is in this room with us." He went on to say, "Jake will be fine." In fact, he was so moved, that he refused to wear his shoes in the room for the rest of the night. He said it was holy ground, and he was respecting it.

Karl, is it Bartameus who you are studying? The one about his being healed? I have really been thinking about what you said about "and they praised the Lord." The prayer that was prayed over Jake was one of adoration and thanksgiving! I just thought you may want to know that.

I also told my mom about something that happened the other night. She told my aunt and cousins who are visiting, and they thought I should share it with you. Do you remember the other night when Staci and I were out to take the boys to lunch when Jake suddenly had the hole in his lung? Well, I dropped Staci at the hospital, then went around the corner to Wendy's, mainly to "nonchalantly" not cause panic in the boys. While we were at the drive thru window, a homeless man started walking toward our car. Memphis is a kinda scary place. There is a LOT of homelessness, and there is no doubt that drugs int he downtown area are pretty prevelant in this population. Anyway, I asked this man to wait just a minute while I ordered. He was holding a spray bottle and a newpaper. He obviously wanted money and would wash my windshield in exchange. I pulled forward just a little, and told him, "I am sorry. I would like to help you, but I have a very sick nephew at St. Jude right now, so I don't have time to let you do my windows." Then, I gave him a 5 dollar bill. I further asked him if he would mind praying for my nephew, Jake. He said, in a stuttering manner, obviously a man of diminished intelligence, "Do you mind if I pray with you now?" I said of course. He put both of his dirty little hands inside my window and prayed the most simplistic but sweet prayer for our baby. I know the Lord wanted me to stop for him and to help him. Do you know he took that money and went straight into Wendy's to eat? Just another expample of how Jake's story is uniting people and glorifying God.

For Sunday prayer request:
1. Jake's lungs to heal from where they blew a hole so that he can be weaned from the oscillator to the ventilator which has more pressure. He needs to be good and healed before he can tolerate this.
2. That the source of the abdominal fluid is found and cleared up.
3. That the granulocyte therapy is effective in ridding Jake of the fungus in his lungs.
4. That the bone marrow donor is ready and willing to give more marrow. Jake has to continue the granulocytes until he has additional marrow to help his start fighting cancer again.
5. That Jake remains fully sedated, with no pain and no recollection of this nightmare.
6. That Don and Staci continue to find the strength to stay by his side and see him through what will be the roughest road so that we can see him renewed!
7. That Hunter and Hayden continue to accept what they are seeing with their brother, and continue to understand their mom's need to stay in the room vs. "play" with them. So far, they have been very mature and understanding!
8. That Jake is healed on this Earth.

Please scroll back and read Piper Ham's guestbook entry. God rewarded her niece's faithfulness! I KNOW God will reward ours. Please say a really strong, affirming, confident prayer, letting God and anyone who hears the prayer KNOW without a doubt that we BELIEVE in the power of our risen Lord, and that HE is capable of healing Jake with a single touch. Love you all... You are so important to us. MO



New day... nice new journal page.

Jake is doing great! He had a couple of hiccups last night, but they are in the rearview mirror! I decided not to update the latest "event" which happened only minutes ago. They decided to flip Jake. He now has a stomach drain tube, two chest tubes, a ventilator, an NG tube in his nose, and a catheter. Oh yeah, and a femoral line with three lumens, an IV in the foot, and an O2 sat monitor on his little finger. Now... imagine a flip! Staci's words were "they said this would not be without risk." So, that was a little worrisome. They expected the sats to drop a bit, and to have to go up on the vent a little until he "chilled". However, within literally a matter of minutes, he was back at the exact settings he was at prior to the flip. He is now resting on his stomach, with the head of his bed elevated, and looking really peaceful. His oxygen support is 60 percent. His sats are in the mid 90's, and his blood pressure is as low (and normal!!) as it has been since he has been in ICU! How bout that for a praise report?! The back part of Jake's lungs will now have a chance to expand a little better, which may be exactly the lobes that needed to improve in order to wean the vent. For someone who asked earlier in the week, Yes... the actual plan is for Jake to stay on the vent for a week to two weeks, at least. However, the timeline for staying on the vent is as long as it is necessary to rid his lungs of the fungus, so his breathing will not be imparied by this nuisance! We will know that he is making progress by his ability to be weaned from the vent. That will be an indicator that the granny cells are helping kill the fungus, thus his lungs will be more efficient.

A great family, the Acrees, from Olive Branch, MS, felt led to come and get the big boys this morning. Kacy Acree said, "Look, you can keep my driver's license or purses or whatever, in case you think we are crazy people for wanting to take these boys out." We were like, "Are you crazy? PLEEEASE take these boys, and keep them as long as you like!! NO identification required!" They are going to a neighbor's swimming party. This is perfect! Pops and Nana had to head home a little while ago, and the boys had the option of going with them. I really think they comprehend the seriosness of the situation, and both were given the option of going or staying without any pressure either way. They both wanted to stay. Having a fun thing to do while here in Memphis is ideal, because they are close enough to get back in case they are needed, but can also enjoy being kids, (somewhere OUTSIDE of a hospital) not that they are on summer vacation. Thanks, Acrees! You are awesome. As for you, Theresa in Hernando, we have you on our list! You are next! Just let us know! Their favorite place in the whole wide world (ok, maybe just the Memphis area) is Jillian's in the Peabody Place. I didn't tell them that you had cyber offered, or I would have had to hear it all day long! So if the offer still stands, I will have them dressed with money in their pockets!! The ICU waiting room is 901-495-4050.

Staci and I are fixing to nestle in to get to the business of painting crosses and pendants. We have been cranking out some really, really cute ones lately; so be patient, please!! Mo

Friday, May 26, 2006 2:34 PM CDT

12:40 P.M.
This is Jin again. I arrived here this morning just as some of my family was arriving: my sister, the other Aunt Bonnie,her two daughters, Cherry and Kelli, and Cherry's husband, Mike. When Bonnie and I went back, Staci and Don were outside Jake's room while yet another procedure was being performed on my precious angel. He was getting a stomach tube to remove the acidic fluid. There was quite a lot of fluid that came out almost immediately.When we were able to go in, most of his numbers were great. Oxygen level was at 65, sat at 95, body temp in normal range, but his blood pressure was high. The big news is that they are beginning steroids again. Staci said that the most critical thing at the moment has to be treated, and that happens to be the stomach fluid. She said something about a "window of opportunity" to administer the steroids, so they are beginning that now. I don't know all I should, but I do know that steroids will hinder some of the other progress we so desperately need. Once again, prayers are needed. Thanks for sticking with us. Jake's prayer warriors are the best!

Jin Jin



Update 5:30am
Things have quieted back down. He is still on 89 percent oxygen but they should start working on backing that down soon. Blood gases have continued to improve. His blood Ph is much better. X-ray has already been in and now just waiting on morning labs eo come back.
Don

Update 4:00am
So much for the nap. Jake's sats kept falling so he is now on 89 percent oxygen. This is hopefully a good thing and means that the grannie cells are attacking the fungus in his lungs. His sats look good now so they should be able to start weening him back down.
Don

Update 3:00am
Still steady. Oxygen sats are down a little so vent settings had to be turned up some. This is more than likely due to the "grannie" cells. His blood gases have improved. Don't be alarmed if you don't see an update for a little while as I'm going to take a nap.
Don

Update 2:00am
Just me & Jake hanging out now as everybody has turned in for some rest. Jake's vitals look really good and the "grannie" transfusions are done. He is receiving platelets now and red blood cells are next on the menu. While we are talking about blood products I would like to thank everyone out there who gives blood or has given blood. You are true lifesavers and hereoes of mine. Next update in 1 hour.
Don

Update 11:45pm:
Hey everybody hanging in there... Jake's vitals may look better than they have in a couple of days! He is only requiring 63 percent oxygen, and the doctor decided to push it in with less pressure (another means of weaning him from the oscillator). He tolerated the decrease in pressure with flying colors. He is putting out more diluted, pretty yellow urine than we have seen in days too. His kidneys are upheld by the angels, who were given charge over Jake! Dr. Raja really is awesome. He is so calm, cool, and collected. Nurse Terri had to leave the room awhile to catch up on her noting, because we are kinda chatty with her in there. We have TWO personal nurses tonight! There are NO other critical kids in ICU (the other few are in ICU "step down"), and there has to be a minimum of 6 nurses in ICU, so Jake was assigned two. How bout that?! His respiratory therapists are a big part of his care right now too, because they watch those vent settings like a hawk. Bobbi just left her all day shift, but not before leaning down and talking to Jake as if he were fully alert. Our new respiratory therapist for the night is Joe. Just thought you may want to know these people names so you can specifically praise God for them and pray for their wisdom tonight.

Hunter and Hayden are lying in the floor of the waiting room on hteir bellies fighting over MOnoply money as if it is real! There is nothing cleaner than the floor of a hospital, don't you think?! Pops and Nana have returned to the hotel for the night. They have checked into the hotel THREE times in the last three days. They keep thinking they are going home, then rethink it, and decide to stay "one more day"! Hopefully, they really will be able to go tomorrow and take Hunter with them. I think Hayden feels like he needs to stay a little longer with his mom. Nevermind that... Hunter just told me he doesn't want to leave either. I guess we'll just have to wait and see.

JInJin is addicted to her new laptop that her precious daughters gave her for her retirement. Her party was this past Tuesday. She was an educator for 32 years and was an assistant principal in a middle school for the next 4. She taught first grade for 13 years, then gifted math and science for 19. She is really looking forward to staying home with Jakipoo next year. I told her I will have to call and wake her up around 3:30 and say, "Jin, you wanted me to call and wake you up for Oprah!" She plans to read, travel, and catch up on years of missed sleep!

OK, that sums up the activity around here. Staci and Don are sitting at Jake's bedside. They snuck in a second recliner, so now one of them doesn't have to sit in a straight back, wooden chair (think the kitchen table chairs) as they sit in and watch Jake. Will update later. Mo

Update 10:05 pm;
I just went in to check it with my own eyes, and Jake is doing GREAT. His vent has since been weened to 69 percent! His oxygen sats are 95 percent. His blood pressur is up at a good spot and his heart rate continues to be a little elevated, but that is nothing new! I reached under his little blanket and felt his leg. That is the most normal he has felt since being put on the vent. His swelling is considerably less. Hello, Nurse Terri's mom... she told us you read the updates...now come up and visit us!! Mo

Update 8:20pm
The little cells are a'flowin. Jake was again surronded by his family and Nurse Terri, all holding hands, as we prayed for Jake's positive response to treatment, healing of the fungus, and healing form cancer. We stand firm in the belief that Jake will be healed. Will keep you posted through the treatment. Mo

UPdate: 6:35 pm:
There was a little rumor that they may be postponing his granuolcyte transfer due to having to increase teh oxygen assistance to 80 However, our new doctor, Dr. Raja, would like to proceed while he is here tonight. If he feels ok, we do to! If I know Staci like I think I know Staci, she probably said, "Bring it on!" Don is NOT going back to work, and is going to maximize his vacation days through Sunday. He has a mandatory meeting on Tuesday. Anything after that equals no pay... I told him no worries. We will cross taht bridge when we get there! So, get your engines running, Jake will be getting his transfusion in just a bit. MO


OK, if you haven't checked yet today, be sure and go to the journal history, because Don did a great job of keeping everyone up to date all through the night. However, it is anew day,and we have big action happening again tonight, so we will be adding to this page too, I am sure.

They have been able to decrease the dopamine to what they call a renal dose. This means it is no longer needed to help keep his blood pressure up, but can use the lower dose now to help his kidneys have better profusion; therefore, better output (aka teetee!) His little catheter bag looks a good bit fuller, so I suppose this is working. His temperature is creeping up , but slowly, and is not yet at a fever. They just came in to suction him, so they had to bump up his oxygen support prior to this to give him sone support during the task. He started at 55 percent O2, and he is now at 64 percent. This is because at 64, he is only showing 92 percent oxygen saturation. If he can pull this up a bit in the next 30 minutes or so, they will pry to decrease the oxygen (O2) support even more. In light of the grannies coming in this evening, and with their having the potential to cause a flare in the lungs, they want him to get as low as possible with the amount of oxygen supplied to him artificially so there is plenty of space to go up in the case of emergency. Does any of this make sense? I am really trying! But I have the advantage (or disadvantage,depending on how you look at it) of watching the monitors and understanding all the subtle changes in a visual manner. Dr. Leung was just in and he said that after the first few grannie transfusions, the risk becomes less and less. Not necessarily today's, but after he has aa few under his belt. This is because hopefully, it is getting the fungus with each transfusion, so there is less there to be attacked, and therefore less inflammatory response which causes the lungs to go a little berserk! All three of Jake's lines have now grown out fungus. However, they took a couple of days to do so, and the timeline of cultures is indicative of the amount in his body. We are standing in faith that God is using this treatment to rid his little body of the fungus and to build our faith! Staci is the strongest one of anyone! She has NOT wavered with KNOWING that this is just another stepping stone to healing. She is confident with every setting change, grannie transfusion, or drop in blood pressure.

We will keep you posted regarding the time of the grannies. The hour or so afterwards is when he needs to be covered in prayer. Thanks for hanging in there with us.

To Vicki in Colorado, thanks for asking...Hunter and Hayden are pretty typical 10 and 12 year olds..., well, let me tell you about them... they both have PSP's, so games or movies for this would be cool. They are learning to use their laptops for watching movies, and like the typical preteen movies. They are game freaks. Even just money for an arcade would probably be appreciated. They have XBox and PlayStation 2. The hospital has both of these available for them to keep them preoccupied. They love the UnderArmour craze,(one of them has some UA socks and the other loves them!) So, I guess maybe this can get you started. Jin gave them a credit card for Christmas which, I think was a Visa, and had, like a $25 limit on it. They thought that was the BOMB! Thank you for thinking of them. They are finally out of school, and are spending it in the hospital. But, they don't complain at all! They just hang out with other siblings around here, and spend a LOT of time in the computer room. I bought them a basketball hoop for above the waiting room door, and let's just say, I am happy to report we have not been kicked out of St. Jude yet! Our biggest regret right now is that they are missing ballgames. It is a real fine line between thinking it is time to go home (and that is for everyone!) or feeling like the wisest thing is to stay. Of course, we would all like to stay ALL the time, but ballgames, work, etc. calls us back to West Monroe. For those who don't know, WM is 5 hours from Memphis, so there is no such thing as a quick trip!

We continue to say, WE ARE BLESSED! The whole family is binding together, and Jake is making baby steps. Praise you, Lord. MO

Thursday, May 25, 2006 9:21 PM CDT

10:40AM Update
Still holding steady. Temp has dropped some so they put the bear hugger back on him. They had to adjust his NG tube so they were working on him and his sats dropped down so they bumped the vent up to 70 percent oxygen until he levels out. They are here in now reducing to 66 percent so he is lining back out. BELIEVE!
Don

9:20AM Update
Jake's x-ray looked better than yesterday's which was better than the day before. Sounds good to me. They are slowly going down on the vent settings. He is now on 60 percent oxygen compared to 100 percent about 36 hours ago. His vitals are still stable and blood gases improved a little. He is still on schedule to receive his "grannie" cells tonight. Pray he has a restful day as tonight will once again be a stessful night for everyone. Get some rest Believers - we will certainly need you this evening and tonight.
Don

7:00AM Update
Jake's vitals are still holding steady. His oxygen sats have dropped to 96 but that is still an excellent number. His platelet count is 34K. They are going to give him another bag of platelets just to be safe. The staff watches his every move and is right there to make any adjustments necessary. I hope to hear from x-ray and the blood gas report soon. Hope you're having a good morning.
Don

4:00AM Update
Quiet hour. No labs or med adjustments. His oxygen sats are 100 percent and his vital signs look good. Labs will be drawn soon and x-ray is at 5:00. My son's will to live is amazing. he is fighting so hard.
Don

3:00AM Update
Platelets are through. They will check them again at 4:00. O2 Sats are still holding at 99. Blood gases are still low. Prayers needed for blood gases to line out.
Don


2:00AM Update
Jake's platelets are critically low at 2000. They usually transfuse him when they fall below 20000. He will be getting that transfusion any minute. His oxygen sats are 99 which is out standing. Once again, I will try to do little hourly updates tonight until I fall asleep.
Don

Hello everyone... sorry for the delay. This will serve as today’s recap...

Jake has not had a single hole blown in his lung today. PRAISE THE LORD! He is relatively stable. He remains on the oscillating vent, with 65 percent oxygen support. He started the day 100 percent O2 support. So, that is progress. Coming off the vent is a matter baby steps, so he took a few today. His heart rate is a little slower, but still faster than normal. His blood pressure was having trouble staying up, so he had to have dopamine to bump it up a little. As I understand it, he can have anywhere from 2-20 micrograms of Dopamine to help with this, and he is now at 7. He had gone up to 8, and is now coming down, so that is a praise report too! He is back under the the heat blanket to help his temp stay normal. His nurses are so amazingly attentive. I mean, they stay IN the room with him at all times. If they are not doing something “medical” related to his lines or medicine administration, etc,. Then they are brushing his teeth, putting on his foot braces to keep him from getting stiff, or slathering him with his multitude of skin creams for post radiation and GVHD of the skin (preventative; don’t worry!) I LOVE the amount of attention they are paying him. Our doctor is only here five days a month, so she will be leaving tomorrow afternoon. We will have someone new over his care. We have really LOVED having her over Jake’s care. She was right on top of those lung leaks and performed the emergency incisions just right then and there. She is actually from Baton Rouge, LA, and even worked a while in Monroe, LA at one of our local hospitals. Is it odd or is it God? Jake will also be getting another batch of grannie cells tomorrow. I, along with Jake’s pops and nana, were considering leaving tonight, but after hearing that news, decided to stay put. He did swimmingly with the first batch, and we are BELIEVING that the Lord if picking the perfect people to give the white cells in order to prevent any harm and to provide a nice, effective layer of protection to Jake.

Now, for Staci’s shout outs... she “took notes” (as we call it) while reading the guestbook and has a few things to say...
First, Jophie, hello there little man. Boy, are you a hero too! I just have to tell you that Jake man is a HUGE sour cream fan, himself. Stacy for Fargo, why in the world are you even considering being in Memphis and not coming by to visit us. I think Staci is pretty qualified as an official St. Jdue tour guide by now. Karen in Bartlettt, let’s get the big boys together one day. They get a little stir crazy sitting in the hospital. Staci has about decided that if ever in a bad mood, she will jsut get an atlas of Washington and start reading the names... Walla Walla, Puyallup, and Snohomish. Man, we have boring names like Monroe, Shreveport, and Baton Rouge. (Did anyone know that Baton Rouge means red stick in french?)

Madelyn Beamon and her mom came up to visit with the Horrocks family. It is VERY encouraging to see our little four year old friend being so feisty and full of life when she, herself, was on the oscillating vent just three or so months ago for the third time! She was running, playing, and riding the trike. It did my heart good to see that! I can’t wait until Jake is running and playing too.

Now, for Susan in New Hampshire....
Staci and Don Raborn are obviously Jake’s mom and dad. Staci also has Hunter (12) and Hayden (10) , and Don is their step dad. Staci is my sister (Mo, aka Melanie Massey Groves). We are the only two girls in our family. No boys! Our mom is Jinnie Craig (yes, you read it right, but if you could see us, you would feel quite confident that she is NOT the weight loss guru!), who is affectionately called JinJin. Our dad is Larry Massey (aka Pops) who married Rita (aka Nana). Because Staci remains close to the family of her first husband, Shannon, you may also occasionally read an entry from MimMim who is the big boys’ paternal grandmother. She claims Jake too! Now for Don’s side... He has two siblings, Bonnie and Eddie (both older than Don). Their mom, Nana Raborn, died last year rather suddenly on Don’s 33rd birthday. His dad, Red Raborn, (aka PawPaw Raborn) remarried recently, and his new bride is Crawford. Eddie is married to Marina and has three kids, Madison, Jordan, and Tucker. Bonnie’s husband is Chris, and they have Maggie and Masie. My husband is Todd Groves (aka Uncle Todd). So that is “Jake 101" as requested. Did I leave anyone out?

I have hesitated to put this on the website, but I would like to mention a loss in our family that occured this week. Todd has a single niece and nephew on his side of the family. On Sunday, I was trying to encourage Todd to stay here with me, but apparently, God knew he needed to be home! He couldn’t even come up and say goodbye to Jake because he knew he wouldn’t be able to leave. On Monday morning, mine and Todd’s nephew, Trey Seab, was killed in a car accident. Trey was 18. Todd had to be home to take care of all the family who was coming in for the services. He has done a great job, and I am very proud of him. I guess you could say no one likes to deal with these types of circumstances, but I would say for Todd this is especially true. I am proud of you, Todd, for all you have been through this week and handled like a champ. And I am so sorry to Larry and Dotti Seab, Todd’s parents, who suffered the loss of their grandchild, as well as to Trey’s parents, Bubba and Debbie. He will truly be missed.

Thank you, Clint Perodeau for the moving guestbook entry. You have set a bar for all of Don’s MALE friends to strive. You have shown that it is NOT feminine to sign the guestbook (although some of the other things I have seen you and Don do may be a little feminine!) Look at William Tickner... he fishes! He is a true grit man! Sign the guestbook and be a man. Real MEN sign guestbooks! Come on, husbands, Don needs some manly support. I am watching for all of Don’s buddies. Just say “hi” if you want! He is looking at the possibility of having to go back to work tomorrow which will be gut wrenching. Even if he does, this means five straight days of 16 hour shifts! He will need prayer!

Thank you to Mark and Mylissa Horrocks, with Habitat for Hope, who have come to sit and visit every day. Mark, the brave, brave soul, took the boys to the Redbird game tonight, along with Madelyn Beamon’s big brother, Tyler. That is what Habitat for Hope does.... it offers support anywhere it is needed. Last night, he sat and played Monopoly with Hayden while Jake was having his second pneumothorax of the day. He also immediately moved to my side and prayed when the situation became scary. Check out their website to learn more about the organization. www.habitatforhope.org

Well, I am trying to convince Staci to go bathe! Just kidding. (No I’m not!) I think she and Don are having a stink-off! So, I will update TOMORROW! I am not making a call about the night tonight. No jinxing! Don’t forget Jake is getting more of the grannies tomorrow, so that will be our most urgent need. Besides of course his lungs healing and him being weaned from the vent. Praise the Lord for all of the things, good and bad, that have brought us to this very moment. Jake is with us. Our family is together, and our faith is STRONG. Jesus, we Believe in your healing power. Our hope is in YOU. AMEN and Hallelujah!! MO

Wednesday, May 24, 2006 8:11 PM CDT

12:05 P.M.

This is Jin's first ever update. I am happy to report that Jake is stable. His oxygen level is at 95 and that's with the oxygen being turned down to 65. That's good. His blood pressure is OK, his body temp is finally in the normal range, but he still has a blanket on his head to help keep it there. His heart rate is in the 130's. I can't speak much about the blood gases, but maybe we can address that later when we know more. Eddie and Bonnie left about 11:00 after a looong night back and forth between the waiting room and Jake's room. Thanks you two for holding down the fort. Larry, Rita, and Hunter went back to the hotel, and Mo, Hayden, and I went back to the Target House. We were all very anxious about leaving, but of course, I made Don promise he would call if there was any change AT ALL! So somewhere around 3:30, we finally left. As has been stated many times, we are extremely grateful for your concern and prayers for Jake. This grandmother loves that little boy so much it hurts. When I say to him, "Next year when Mom goes back to school, it's going to beee...," he says, "me and you!" He points between us as he says it. Retirement planners say that when you retire, you need a plan. I have one: keeping Jake. So, please continue praying for my Precious Angel (that's what I call him.) I need him.

Thanks,
Jin Jin

9:30AM
Jake's blood pressure, oxygen sats, heart rate and temp all look good. They have lowered the settings on the vent some which is always a good sign. His blood gases are still a concern and will be the main focus of the medical team today. Keep praying. Talk to you soon.
Don

7:30AM
Jake is still working hard. His blood gases have improved ever so slightly. The x-ray this morning still showed some air leaking out. They will watch this closely. I have not seen Staci since 2:00am. I hope this means she is getting some good rest. She is exhausted and needs sleep. She watches her baby so close and knows every little move he makes. Will keep you posted.
Don


4:35AM
Waiting on 4:00am labs to return. His sats are holding at 94. This may be the last update for a little while as I'm going to close my eyes and dream about Jake and his first tee-ball game which is only 10 months away. Hope to see you there.
Don

3:00AM
Jake's blood gases are a little worse right now so prayers are needed. They are constantly adjusting his meds trying to line them out. Please pray.
Don

2:00am
Just saying we are all up and still standing vigil in the waiting room. After I opened my big mouth and said, "It is going to be an uneventful night", all of us are afraid to go to sleep! Even little ol' Hayden is sitting here wide awake playing computer games. Jin, Eddie, Bonnie, Hayden, Staci and Don have inhabited the 3rd floor waiting room. It is hard to see Jake so acute. That is really the only word that comes to mind. He is so swollen, and tubes are hanging out of him everywhere. The "heating blanket" and head wrap seem to be doing the job. He still needs to come out of an acid state and more toward a balance pH, so if you are up, that would be a good prayer. He can achieve this by getting more oxygen into his bloodstream and carbon dioxide out. We will all be doctors when this is all over, won't we?! Hey, Cindy and Jane, thank you for staying the course. Love you both. MO

1:30AM:
Jake's oxygen sats are back up to 94. The doctor just told me his blood gases are improving slightly. His temp is slowly rising and his blood pressure is better. Keep praying. Don

12:10am:
Jake's oxygen sats have stopped climbing at 86 percent right now. they occasionally bounce up to 89. He has been put on THAM, a med that runs through his IV that basically helps level out his pH, as they are now saying he has acidosis. He is also on nitric oxide gas which is to help the lungs in some way. I plan to find out more about that soon so I can explain that the best I can. If one of you nurses out there understand the necessity, please advise. Don said basically all you can see is a little head sticking out. They have him covered with a big warming blanket that looks like a blow-up raft lying on top of him. They have wrapped a towel on top of his head to help him keep the warmth in. He has 12 pump channels ready to send in meds... 9 of them are presently activated. He has four IV poles next to his bed. This baby is a tough cookie! Praise the Lord for staying here with us. Oh, and Eddie and Bonnie who headed out of town around 9:45 tonight, have since turned around and are now back. Just one big happy family here in the ICu waiting room. That is one VERY LOVED little boy. Mo

11:45pm:
Jake's vitals are levelling out. He has sustained another injury to his left lung. The wedge resections that he has had in the past to cut out the hepato from his lungs weakened them, so he is susceptible to these "bursts". His oxygen sats dropped to 70 percent as we sat outside the room and watched through the window. They were back up to 87 percent when I came back out to the waiting room. we need his blood pressure to come back up. They "forced" it up with LOTS of fluids in a short period of time, as well as administering dopamine to kick it up. Come on, Jake baby, fight! MO

10:50pm:
Jake has another leak in his lung. The same doctor who put in the chest tube this morning has returned to do the same procedure. Staci said that Dr. Frantz said this is not all that uncommon, and that there have been kids who have required up to 7 chest tubes to let the air out. he is in the process now of getting another incision and tube in to suck out the air. It went smoothly this morning, and we are claiming it in Jesus's name. We are asking that God send his angels to have charge over Jake, to surround his bed to keep him safe, and to lift him up above disease and harm. His blood pressure is 70ish over 30ish, and the drop in blood pressure is also quite scary. Pray for Staci and Don to remain calm and that Jake is sedated enough to not feel this physically or emotionally. I pray that he is not scared and does not feel alone. In Jesus's name, he will be ok. Mo

10:35pm: ALERT!
Prayers needed yet again. All I know is that Don just ran around the corner to the waiting room and yelled, "Come on" to Staci. He never gets too upset or worried, and he visibly was! Staci ran out, and all I can see through the window is two or three nurses in there with him and a doctor with gloves on. A big machine also just wheeled in too. Maybe an x-ray? I just don't know yet. But, I DO know who to call on ... our believers. Please pray for stable and healed. Mo

UPDATE 10:00PM 5-24-06

Jake is still stable. He now has a bear hugger(warming machine) on him as his temp is low. I will try to little updates as long as I'm awake.

Keep Believing,
Don



Ta Da... new page! new day!

Jake has had a wild ride today. He is now on a ventilator called the oscillator. It sends little puffs of air into his lungs vs. big UP and Down breaths into his lungs. Supposedly, it doesn't give as much ventilation, but it will allow his lungs time to heal, and given that he blew a hole in one of them today, that is probably a very good thing. His doctors and nurses were SO on top of the situation! The second that incision was put into Jake's side, air popped out into the syringe, and his vitals started normalizing almost immediately. He now no fever (although they are questioning the patency of his temporary probe and plan to change it momentarily), and his heart rate is lower than it has been in days. We are told he is aware that we are in the room and that he can hear us. However, he is too sedated to even open his eyes or speak. We have been checking on our buddy, Jacob Duckworth, (fl/jacob), and it sounds like a real blessing that Jake can't communicate. jacob has been crying silent tears and gesturing, and that must be heartwrenching to his parents. We KNOW we are blessed today!

Let me say hello to a few people who took the time out to visit us today. Hello, Jill M., yes, I KNOW you know that miracles happen, and we continue to claim one for our Jake! To the Jesters, the time has come for teh family to come together for a new computer! Jake is supposed to be on a vent from one to two weeks or until the granulyte cell treatment is over. So, you will need the computer to check on us. Joan, you tell Spencer that he is absolutely right... Jake DOES always pull through, and he showed that again today. We are thankful to the Thompson/Spivey clan who I now see have added Craig out in COlorado. You have been so faithful to keep up with Jake, (and that certanily includes the Ross family... Kristy!) Gotta give a shout out to the OPSB teachers, infant group and all the friends of mom, Staci, and Bonnie. Thank you. Your prayers are so appreciated. And... to the teachers who are having their classes pray, like you Christy, we LOVE that you are doing what you think is right and necessary. Thanks. William Tickner, we will be here again tomorrow, and we want you to be also, sooooooooo hold down that speed, dude! Karen in Bartlett, TN, just to prove we are as normal as the next, our two big boys got into a brawl this afternoon, involving POOL STICKS! I thought we were heading to another childrens' hospital, but it will probably just be a big ol' bruise. We understand about the tales of 3 boys! Kathy, I met ALlison and Noah at the event sponsored by the PGA yesterday aftenoon at the Target House. I also met three of the golfers. I gave them good luck tokens with the St. Jude logo on them with cards from Jake with a picture of him preparing to swing a golf club. He always did have a good stance! The card said, "Good luck from Jake." The St. Jude/FedEx PGA tournament is in town this week, and golfer Tim Herron said he would be using the ball marker from Jake at the tournament this weekend. Lori in MA, isn't it such a cool God WInk that you are now noticing all the Believe bumper stickers? Thanks for sharing that with us. And thanks for keeping MA covered for us with prayer for Jake. Stephanie in Omaha, when we are through with all this junk, Jake would LOVE to watch his beloved LSU Tigers at the College World Series, so we will be looking you up! Annette in WM, glad to hear your sense of peace has returned. Keep praying. It always really, really means so much to me, personally, to hear when people get such a sense of peace. Nurse Sarah... YEAH for you!!! Now we are looking for Nurse Alexis! Hello?? I have had so many of my patients and their families signing on, and I just want to say thank you so much for your support. I truly love my patients like my family, and your support makes me feel that this is mutual! Lauren, Press, Hayes, Alaina, Mattie, Shelby Mae, Rhett, Seph,Meredith, and MORE... these are who I have read about recently, so they are fresh on my mind. thanks to ALL of you. Also, my office, MMPT, stopped and gathered today in the PT gym, right there with the patients, to pray for my nephew. I am so blessed to have such a loving and supportive staff! Uncle Eddie and Aunt Bonnie say thanks to the entire North Monroe church family and staff, and in particular to the Adult class, 8C. (Pops said that sounds like a cell block number... and Eddie agreed it should be!) Phyllis LInes, if you need an update, and won't have access, just get me your number and I will call you. We don't want anyone who wants to pray for Jake to be without the information to do so specifically. Heather, thank you for your words and for always giving such a great scripture at just the right time. The same is always true for Mrs. Fay's prayers, amen?! I am loving all the dreams of healing folks are telling us about.. like yours, Lori Beth in Alabama. Amy in IL, you are so right about being humbled and AMAZED by the community of believers who have come together in such a huge way for a common purpose. It is overwhelming. Truly it is. To our Jake Owen Believer, Staci said you picked the perfect picture. It is one of her favorites! Thank you for coming through, yet again. BaileyGrace and family, you are so encouraging, and we LOVE when you sign on with words like "our faith is STEADFAST!" Jingles, glad to have you, and I think you win for coolest name today! Welcome to Christina in Baltimore and Debbie in Ohio. Thank you to a few from my own sunday school class, Todd (HEY!), Teresa, Mistie, Cindy, Shawn, and Greg.and of course to my teacher, mentor and friends, Carey and Dottie Winters. I know there are others, and I apologize if I missed mentioning you. Pops and Nana say thank you to Linda and Rich Bailey who they can call and get the word out quickly to get the prayers going up.

Liz D. in New Iberia, LA.....CONGRATULATIONS!! You are our 1 millionth visitor! I would love to send you a complimentary Believe pendant, but you will have to wait a long, long time, as we are quite backed up! So, for now, I will just have to offer my congratulations, and say thank you and so many others for loving Jake.

We will post with any changes. Go to bed early! We are expecting an uneventful night! Mo

Monday, May 22, 2006 6:27 PM CDT

update 4:45pm
Well, what a crazy afternoon. Just about two hours ago, I was downstairs doing a nice long update with Staci standing over my shoulder saying, "Come on, Melanie, I can't be gone all afternoon." It was our plan to take the big boys to lunch. I LOST the update thanks to the good ol' time limit on the St. Jude computers, and I didn't have the mental energy to re-do it, not to mention, we were really under the gun for getting to lunch and back. That turned out to be a blessing, because we were hardly outside the St. Jude gate when Don called and said, "Get back here. Jake's sats are falling, and they can't get them under control." I guess the updates by Uncle Eddie fills in the pieces for you. I am back to say he is doing better. He has already been changed to an oscillating vent which, from as much as I can understand, takes over his breathing for him entirely. It helps get the oxygen in and the carbon dioxide out. Our dear friend, Trish Hampton, called and she is our personal ventilator educator, so I have her cell and will be learning more about vents and what the weaning process is, what pressures really mean, what the O2 up or down means, etc. Sweet Emma Grace was on the vent for three months, so she knows the whole process surrounding how to progress or step back on the vents. Anyway, Jake's sats are now at 97 percent. His heart rate is 144, which is down from the 170's or more from last night (and 190's per Uncle Eddie from yesterday!) His blood pressure is actually a little low,but they gave him a blood bolus (have YOU had YOUR blood bolus today?!) which should increase the pressure. The drop in pressure is characteristic of this type of ventilator, so all is well in the world. And... we just had a fire alarm!!! Being in the waiting room with two teachers, we gathered all our valuables, and proceeded to the nearest exit to begin the long descent down the stairs. Staci; however, told the nurses and docs in iCU that this place would have to burn down with her in it, because now that Jake is stable, she "ain't going nowhere!" So, breathe easy. Thank you to all you prayer warriors who got on it to pull Jake through. Also to those of you I was able to call who also rallied the troops to pray. Expect more info later. MO

3:45pm
Believers,
Jake has a small hole in one of his lungs which released air in between his chest cavity & lung which did not allow his lungs to expand....but as ususal the St Jude team was on top of it and inserted a chest tube to equalize the pressure and "bagged" him until he is now more stable and will be put on a lower pressure ventilator. He is still in critical condition but the staff seems to be more confident since they know what caused him to "Crash"
Keep Praying Baby Jake needs more now than ever.
Jake's Uncle Eddie
P.S. I will update soon
KEEP PRAYING.
BABY JAKE NEEDS YOUR PRAYERS, HE IS NOT DOING GOOD AND THERE ARE MANY PEOPLE WORKING ON HIM AS I TYPE.
PLEASE PRAY
BABY JAKE'S UNCLE EDDIE
I was going to wait on Mo to do the update, but after seeing all the entries this morning,you guys need some sort of update! We had a pretty hard night. They had to increase the pressure on the vent several times. Jake's oxygen levels would never stabalize and his blood gases were all out of whack. They did an x-ray and said it looked really junky. A repeat x-ray was done this morning, but I haven't heard anything on it yet.The talk was to change him off this vent to the oscilating(sp?) vent. I finally went to the parent room around 6:30 this morning to close my eyes and when I returned to his room this morning, his nurse stopped me and said he is doing so much better. His blood gases were better and oxygen was stable. YEAH!!!! They decided not to change his vent. He has made a vast improvement from last night. Thank you all so much for the prayers. I am touched so deeply by all the support. Lord knows I need all the encouging words right now. He is such a figher. Please also keep Hunter and Hayden in your prayers. It was very hard on them to see Jake in this situation. I had hoped this was a situation I could have sheltered them from. All of them.
I promise Mo will fill all of you in later.




1:35:
Jake is about half way through with his second bag of cells. The scare a little earlier came when his brothers and JInJIn showed up. They were told that he could hear them, and shown pictures of him in advance to prepare him for all the tubes, his swelling, etc. The childlife lady did this for us before she left today (thanks, Miss Amy). Anyway, both boys got a little emotional, and you can only imagine ol' Jin! Jake, in turn, got emotional too. He is only sedated, not paralyzed (trying to avoid that if possible), but he started stirring and his oxygen sats started dropping. He is now calm again, and no one is being allowed to go in and chit chat with him anymore. He is requiring 85 percent oxygen, down from 100 after the stimulation. No signs of problems related to inflammation from these foreign cells. In fact... NOTHING has grown from his cultures as of yet. The yeast was growing out in a matter of only a few hours only a day or so ago. Now, it has been virtually all day, and NO signs of yeast showing in his blood draws. Thank you, Jesus. Thank you for hearing our prayers. You are showing your majesty in this situation and proving your power and that you are a God of mercy. You, alone, have the power to heal Jake, and as a multitude, we join in claiming victory over fungus AND cancer! Amen.

Can I just tell you how humbled I am at all the people praying with our family as if it is their own?! To our friends at home, thank you so much for loving us. For those believers we don't even know, how can we ever repay you? ANd for those checking in all hours of the night, thank you, Lord, for urging their heart to hang with us. I have to get two little boys to bed at the Target House, so I am about to scoot. Be looking for the next update tomorrow am (oh, wait, it is already tomorrow am...) I mean really tomorrow am, and if something changes, I am sure Don will let you know. (no internet access at the Target House.). Praise the Lord. Claim the victory. Believe in the power of God. Mo

12:15am....
First dose of white blood cells almost complete, Baby Jake gave us a scare a little bit ago trying to "breath over" the ventilator....he was trying to move his arms around and trying to wake up, Jake is so strong and such a strong will, but the nurses were on top of it and got him stable, there is a fine line between how much medicine he needs to keep him sedated, still, and peaceful.
Continue to lift our Baby Jake up to Our Lord. Jake continues his battle.
Baby Jake's Uncle Eddie

10:30pm...
First hour down, and it is all good... Yep, it is well with our souls! Jake required 75 percent oxygen support prior to the transfusion, and now they have been able to turn him down to 55 percent, so actually that is improvement. We are watching that lung function closely, and so far, he is doing great. He will get these blood cells over the next three hours, then a break, then another 3 hours worth. Hey, Miss Jane!! I know you are still checking! Mo

9:20pm..it is GO TIME! As I listen to Brooks and Dunn singing
"I BELIEVE" in the background, and have my sister telling me, "Melanie, I just have a peace and you should too!", the grannie cells are going in. We circled around Jake's bed, holding hands with family and our nurses, and Uncle Eddie led us in prayer. Let me tell you a little about the coincedences of the day. First, Eddie and Bonnie were heading out of town today, and the "power verse" on our local radio station was a verse referencing our need to "BELIEVE". Then, we are watching American Idol and we perk up as we overhear (because we were really only marginally paying attention), when we heard Simon saying, "I believe.. I believe..." Eddie and I just hit a big high five at the coincidence. As we flip the channels in the ICU waiting room, there is Brooks and Dunn receiving their award for best song (or something) with "I BELIEVE" on the TV screen. Staci and I hit high five and said "oh, yeah, that is a good sign!" Now, as we are all standing around with a pounding in our chests, the nurses are fiddling with the stop/start buttons, straightening the lines, etc., then say, "Ok, here we go" at EXACTLY the same time that they start singing "I BELIEVE". I am telling you.... God is all over this!! Mo P.S. Pray NOW, because it is happening right now! Mo

Update 8:45pm
Well, still no grannie cells as Don calls them. The rest of us call them granulocytes! Anyway, they are waiting on platelets to run. Oh, and Don also wanted me to clear up that he is NOT naked, he has on a gown and a diaper. Ok, so now with that cleared up, his oxygen sats are in the low 90's on the vent, so they are waiting with the white cells. They are increasing his sedation meds because he is pretty ticked off when they suction him, and his little flailing arms may pull out the tube. Speaking of flailing arms, we think we saw a change in his status when Taylor Hicks sang, "Levon". And, I think we have a winner!! Back to the main story... His heart rate continues to race. Dr. Triplett says an increase in heart rate is somewhat normal on the vent,but not necessarily THIS high. His blood pressure is still high, but seems to be dropping ever so slightly and slowly. We drew the lucky straw and got one of our all time favorite nurses, Terri. She ROCKS! I think she is a little nervous about handling this complex patient, who also happens to be her little buddy, but we know we are in great hands, and would hand pick her any day! She was the only one today who was able to stick ANOTHER line in his foot. He has so many meds to go in, they are having to create new places to give it. His first set of buddies in his groin had three lines, but so many of his meds are not compatible, so now he has four. On a good note, Dr. Barfield said he feels the level of danger came down a tad from already being on the vent. They can manage him more easily with meds, keeping him breathing,etc., since he is already good to go with the vent. We will keep you posted. Jin and the big boys are on their way up. They will be pretty shocked, I think, when they see him. Pops and Nana Massey are also on their way up. Aunt Bonnie, Uncle Eddie, PawPaw Raborn and Crawford are all here too. Just one big ol' party of people who have come together for the common purpose of supporting and loving Jake. Keep it up, believers. We are checking the site, and I promise, reading EVERY SINGLE entry! You have come through once again. Thank you so much for your love. We can FEEL it!!! Mo

Update 4:50pm
Jake is still just lying flat on his little back, legs spread, naked, and a tube helping him breathe. His respitations are obviously much slower, since the vent actually dictates teh rate at which to give Jake his breath. He has a 103 degree fever. His heart rate is around 177. It is racing out of his little chest. All this, and we are still waiting for the "dangerous" part. Staci and Don are not upset or afraid (yet!). They are sitting in his room, talking with Dr. Triplett who has been with us since the night we were admitted two years ago. Don is pointing out to me and Staci (and our clumsy selves) that the chairs are sitting over the cord that plugs in the vent! Okkkkkkkaaaay, Don! We are being careful!! That sweet angel looks so, so acute and sick. However, this situation has been given to the Lord, and if you get the chance, just LOOK at all the people who have signed, BY THE MINUTE, today, claiming God's promises (Miss Brenda, I have been singing Standing on the Promises ever since you put it in the guestbook) and praying for this sweet angel. Also, Julie, It IS well with my soul. Jesus loves his little children, and we continue to claim the victory! The procedure should come in a bit. MO

UPDATE 3:00PM

Jake is stable. The team is slowly getting everything line out. He does not seem to be fighting the vent very much right now which is a good sign.

The transfusion of white cells will take place sometime this afternoon.

Will keep you posted.

Believe,
Don



Update 10:00am... Staci and Don just signed the consent to have to have the ol' line pulled! That should occur in just a few.... Staci said now she is dealing with the emotional impact of Jake AND the emotional turmoil of having to say goodbye to the buddies. Usually kids get to keep their buddies when they are pulled, but his are infected so they must be processed in a lab. Goodbye, little buddies!!

He is also reportedly "stable" on the vent. Staci said she could actually hear Jake grunting trying to breathe last night from the parent room next door. So, now he is not working so hard, and he can just "be" and wait on his healing. The docs think it is probably a good thing that he is already stable on the vent, because that is one less hurdle that will have to be tackled after the granulocyte transfusion. So, there... God KNOWS what He is doing!! Amen?!

UPDATE TUESDAY 8:50AM

Jake is being put on a ventilator as I type this. He was working so hard to breathe that he was becoming phyiscally exhausted. The medical team is working to get him stable. They are also putting in a femoral line that will serve as temporary "buddies".

Needless to say, Staci & I are overwhelmed with emotions. Our little baby boy is extremely sick and needs every prayer possible.

We will update again soon.

Believing in Jake,
Don & Staci



Prayer Warriors, start your engines...

Of all the scary things Jake has been through, tomorrow's procedure may take the cake. It is right up there with the liver resection surgery that they couldn't guarantee he would even survive (over a year ago!) When Staci and Don decided to go through with the bone marrow transplant, they jumped from the CHEMOtherapy train over to the IMMUNOtherapy track! Now, we are in it thick as thieves. Jake's problems right now basically stem from haveing a very weak and immature immune system. He has new marrow, it just isn't building its own cells like it should yet in order to combat all the infection, yeast, fungus, etc. Lots of these are a biproduct of the meds (namely antibiotics) he has to be on to protect him from bacterial infection. It is like a dadgome vicious cycle. He is still not breathing well, and the docs feel that it is largely due to a yeast infection (candida, for all you nurses) that has settled in hid lungs, and who knows where else. It is showing up in his bloodwork from both lines, so they are going to pull his lines (aka "buddies") tomorrow morning. The usual way they do this is come in, pull back the sheets and yank. It makes me want to throw up just to think about it. His buddies have been stitched into his little chest for two years, and the tissue around it has grown to securely hold it in place, and it has done a great job! We are really blessed that it has made it this long. However, once the candida gets in the line, it is typical for it to cling to the plastic and VERY hard for it to ever clear up with antifungals alone. Jake's persistent fevers and difficulty getting breath is likely due to this infection. In Jake's case, they are going to sedate him in the morning to get the line out. Then, they will put in a new IV in his groin for getting blood draws for labs and to administer meds. He will be a candidate for new buddies in a few days. Ok, that is "simple" enough. However, the biggie is what is happening tomorrow afternoon. They are planning to use granulocytes, in the form of donated white cells, to go in and "clean house" on any fungus/yeast. The problem here is that if Jake's lungs already have hepatoblastoma, yeast, and then get inflamed from the attack, this could be very, "dangerous" to use the doctor's word. They said it could cause an inflammatory process setting up acute respiratory distress. Oh, man! The only way to then treat this would be wiht high dose steroids which has no impact at all on the yeast, and only suppresses what was just purposefully set in motion. Does all that make sense? They said we should know within an hour afterwards how he is going to resond to it. The docs will be hanging around, ready with a VENTILATOR, just in case. Oh, man, again! Basically, there are no other options. Meds are not taking care of the fungus, and in fact it is getting stronger. The lines need to GO because they are infected, and are just sitting there seeding his body. His lungs are getting weaker by the day, and he is really struggling to breathe! So, that is the plan.

I think that I have actually only called out the lurkers one time in the "history" of this website. As for prayer warriors, I will "direct" you with our prayer requests, but even then, I don't think I have pleaded with you for banning together, signing on with prayers, scriptures, etc but a handful of times. This is definitely one of those times!! We NEED you to pray, encourage, send positive affirmations, claim scriptures of strength, hope, and healing!

I asked the docs, after listening to their "worse case scenario" talk if I need to contact our extended family to come in tomorrow. I explained that the whole gang usually comes up for surgeries and "biggies" of the such. They said, "If that is the case, then I would certainly call this a 'biggie'". Ugh. I did see a cross on the ring of Dr. Barfield and asked him if he would be sure to pray for Jake and that these granulocytes do exactly what they need to in terms of attacking yeast and any other potentially fatal infection in Jake's body WITHOUT causing any dangerous inflammatory response requiring intubation. He said he would. I did this only after asking him about the "best case scenario" and whether he had ever had a patient who got the granulocytes, then went on to improve daily as the white blood cells did their thing. He said he had. Alright, then this is what we will claim!

Jake's AFP came back today 1400. Do you remember Jake having almost three months off chemo last summer when he was doing AWESOME, and they were waiting to see if a tumor would rear its ugly little head? The AFP at the end of the summer was 1200. Now, almost a year later, and without any real treatment to speak of in a couple of months, his AFP is relatively low! We were pretty pumped. The average timeline for solid tumors to respond to bone marrow transplant is 129 days (July for Jake!). If Jake can get over this big hurdle, he has a pretty good chance of whipping hepatoblastoma with an AFP of only 1400.

So, in conclusion....
Please sign this guestbook tonight or tomorrow...

Pray on the hour, every hour for Jake's response to the treatment to be mild on him, but EFFECTIVE on the yeast/fungus...

Pray that his breathing comes back to normal soon...

Pray that no ventilator is necessary, but if it is, it will be short term and it is ONLY because God knows Jake's lungs need a break! (His respiratory rate is 70-80 at times. Try breathing short and shallow for about 3 minutes and see how it wipes you out, not to mention, you can't get in much air!)

Pray that his kidneys and liver hang in there. So far, they are doing well. His liver is quite enlarged, and he is kinda yellow, but we are praying that the candida is not in these organs, thus another potential for inflammatory response with the white blood cell introduction.

Pray for Jake's overall strength. He has certainly run the good race. But he has miles to go.

Pray for Jake's TOTAL AND COMPLETE EARTHLY HEALING>

Don and Staci are just toeing the line. They are so stoic and strong. They are just kinda like, "Ok, well if this is what we have to do to get our son well... bring it on!" Staci was ready for them to pull that line today, because she just saw it as a way to get rid of fungus! Pray for them tomorrow too. It will be a highly stressful day. To God be the GLORY in all this. Jake will sing praises to our Lord and Savior when he is fully healed. As we do now. Please sign on... sign on all day if you want. Just pray and have everyone you know join you! MO

Sunday, May 21, 2006 , 10:45pm

Another update... 11:00ish,
Miss Fay, After making my own Caringbridge rounds tonight, I went back by Jake's guestbook to see if anyone had signed yet. Just look at your prayer requests, then see how many of them were answered in jake's good day today! He sat up and "played more" and he didn't have stomach pain. So how bout them apples?! Thank you, Jesus, for your many blessings. Please, Lord, continue to heal and encourage.

Update Sunday night 10:20ish:
I decided to edit the page rather than clear yesterday's entry, because I think there are lots of Believers out there who read at work, so I want them to know what has been going on this weekend. Jake stayed awake for probably 5-6 straight hours today. That was unreal! He wasn't real active, but we watched cartoons, a DVD on his laptop, and played a game or two on his computer. He has not had ANY complaints of pain in his belly which is SUCH an answer to prayer! Remember, he has no immunity, so we are still keeping an eye out all the time for fevers, which he has had on and off today, with the most recent around 101. When they draw blood from his buddies, the yeast is growing out in a matter of a few hours, so they are sure it is there, and now in BOTH lines. The problem here is that the fungus has a propensity to attach itself to the plasstic of the lines, and then they tell us it is virtually impossible to get rid of. They are hoping this has not already happened. When the night nurse, Pam, came in to give Jake his anti fungals in his buddies, I asked her to come back and put her hand on the meds. Confused, she obliged. I then asked her to join us in praying that those antifungals do the trick. She assured me she would. Jake should start getting donor neutrophils tomorrow (or at latest Tuesday) which they tell us will go directly to the site of any infection. Therefore, if his lungs have fungus or other infection, we may expect a little worsening of his breathing before it gets better,as the new killer cells are on the attack. Jake HAS to keep his oxygen right under his nose or his sats are dropping to the mid to low 80's. Staci is like a hawk, monitoring the position of his oxygen at all times, and keeping her eyes peeled on the monitors. He is still pulling pretty hard for air, but because he has had a relatively good day, I will not beat on that dead horse, and just be thankful. Our day began with a surprise from our doctor that Jake had been given the grand prize of being chosen to move to the 3rd floor (ICU step-down unit) because a new kid needed a bone marrow transplant and needed our room. Let's just say there are times that Staci NEEDS someone else to "fight" (or better yet "advocate") for her. I couldn't believe that they were going to kick us out of the room that they have been in for weeks in order to accomodate someone else. I gently reminded out doctor that I distinctly remember our needing a room down on the 2nd floor, but since there wasn't one, we had to postpone our admission. Also, I explained that to them, this IS HOME, and to ask them to move, and try to smooth it over by saying, "Well, you can move back in a day or two", just makes it worse! They have accumulated a lot of stuff, and moving is not fun no matter who you are....unless it is home home!! When our dad called, he asked Staci how Jake was doing. She told him that he seemed to be doing better today than yesterday. He asked how his night had been, and she said, "Pretty good, no pain, and he slept well." Then she said we are fixing to move to the ICU, and he said, "Dang, I hope he he doesn't get any better. I don't know where they could move him next." True, huh? All day, the joke here has been to find a positive out of the situation and it has been a hoot. There is no bed (aka pull out couch) to sleep in. A big ol' light stays on all night long to accomodate the nurses in the room. There are no bathrooms in the patients' rooms, and there is no private shower. It is a community one down the hall. So, YEAH, we are glad to be the ones to give up our room! OK, again, I am through ranting; I just needed to get it off my chest. We love St. Jude and all that it has done to make him better. Oh, and with the influx of neutrophils, and his oxygen levels dropping over the weekend, we may NEED to be in ICU anyway. Dr. Hale said we were picked to move because Jake was the sickest and most "complex" kid on the bone marrow floor. Wow!

I need to clear up one thing. The other night I referred to Don's gift to Staci as being "a diamond necklace with three little diamonds." He would like me to say "a diamond necklace with three huge diamonds, so big that it hurts her neck to wear it." Better, Don?!

I list prayer requests below... please print and use this week. Jake has an xray at about 5:00 am to see what is going on in his lungs. They are pumping him with Lasix to help him get rid of fluid. Pray that his lungs look clear. ALso, an abdominal ultrasound at 9:00ish. I suppose to check for the GVHD resolving. His belly is VERY swollen, and they are wanting to know if this is just air or if it is fluid too. Let's face it... we need an answered prayer for fluid to GO AWAY all over! Also, that the fungus in his lines is resolved so no new line placement has to occur. ANd... that his ANC starts coming up on its own. Oh, one more... that his donor is ready and able to give more cells to help his new marrow jumpstart again. We are still claiming a victory over cancer, in Jesus's name! Mo

Saturday May 20; 11:10pm
I AM NOT BELIEVING that I just lost my entire update! And it was a good, long one! I will do my best to remember allt he information, but it is highly aggrevating. Ok, I am through ranting and raving..


Jake had a little trouble breathing during the night last night, so he is now wearing a nasal canula for oxygen. Without this extra support, he cannot keep his oxygen saturation above 90 percent. With it, he is typically above 97! He just says, "Dad, it bothers me." Don tries to distract him, but he is no dummy! He is such a big, brave boy, and everyday, it seems he has more to deal with, and deal with it, he DOES! He also had to ride in his Uncle Todd's lap in a wheelchair down to xray this morning to AGAIN check on fluid accumulation in his lungs. Particularly the right one again. The doc compared this xray to the one from Wednesday, and says there is definitely more. We reminded him that there was none, although the xray appeared to show some last week. Prayer changes things, don't you agree?! Anyway, he feels this "fluid" is the reason Jake is struggling a little to get his breath. If I have asked one person, I have asked 5, and all of them tell me that "as long as his sats are good, he is doing fine." I just don't like seeing him struggle to pull in air, using his neck muscles, his belly flaring, and no good rhythm to his breathing. His liver is enlarged, and since it sits right up under his diaphragm, thus pushing into his lungs, this too could contribute to his trouble breathing. He is on Lasix to help with his fluid accumulation. He is filling diapers right and left. His Uncle Todd and Dad have the tag team diaper competition licked! Jake knows when he has teeteed through his diaper and onto the pad, and let's you know it. Don handles the diaper, and Todd handles getting Jake moved, and a new pad back in place under him. Jake actually gained over a pound since just the morning to the early evening in fluid. He is on an unbelievable amount of medicine which the docs say can cause all this fluid retention. It is definitely a problem.

You should hear all the dadgome noise in this room. Jake's oxygen percolates, his oxygen monitor is set at a low threshhold, so it is constantly going off, and his air mattress resets intermittently, so all of the sudden a big roaring sound of wind comes through. It sound like we are in a rain forest. Todd actually said he finds the oxygen tank "soothing"! What a geek. Earlier, just to pass the time, Staci, Don, Todd and I tried to make a little diddy, timing our mouth clicks, hand taps, and funny sounds with the alarms going off. It kinda had a little ring to it! That entertained us for about five minutes!

Jake has been sleeping virtually all day. He really has his days and nights totally mixed up, although now even at night, he isn't up much either. Let's just keep saying he is hibernating as his body gets stronger and well. It is now after 11:00pm, and we are just starting to see some big blue eyes, very interested in a Nascar race on TV. He said to his mom, "Look mom, Frosted Flakes", when he saw the Tony the Tiger emblem on some of the dudes' uniforms.

We lost a St. Jude friend yesterday. He, like so many other kids here, was such an inspiration. He was a cool kid, and Hunter and Hayden were always amazed by his yoyo skills. Stop by and give his mom a kind word. www.caringbridge.org/visit/rayperry
Also, another buddy or ours was sent home about a week ago with oral chemo to "buy some time", but has not been feeling well either. He is such a cool little dude, and was a great friend to Hunter and Hayden when they would come to visit. Billy Paul lived at the Target House and are from south Louisiana. His mom always comments on his spirituality. Another child of God! www.caringbridge.org/visit/billypaul
Lastly, our friend from Florida, Jacob, has been in ICU on a ventilator, so he too could use an encouragement. www.caringbridge.org/fl/jacob
I will tell you, the bonds formed among parents of kids with cancer is like none other. If you ever want to be inspired beyond imagination, plan a little trip to St. Jude and just hang around one day. These kids are so full of hope and determination!

Jake stayed awake today just long enough to play a little computer game (the new Dora game from Larry and Dotti Seab!). His sitting up lasted only about 30 minutes today. Everyday, I think, "OK, TODAY we are going to get out of this room." But everyday, he feels just too rotten! Maybe tomorrow!

One more thing... Jake has a fungus in his white buddy. He does not have an ANC (0) to fight it. The docs are talking about trying to transfuse neutrophils next week to help him battle this potential infection. If this doesn't work, they are talking about the possibility of removing his present buddies and replacing them with new lines. We DO NOT need him to have to go through this. So, join me in the following prayer:

As for prayer requests, here goes...
1. The fungus in Jake's line to go away with only the antifungals he is on.
2. The fluid to resolve so Jake will be able to breathe easier.
3. jake's ANC (immunity) to come up so he will have something to fight with!
4. Jake's liver enzymes to drop within normal limits, and for his liver to shrink to normal size to take pressure off his breathing and for his belly to return to normal size.
5. Jake's lungs to remain healthy and for the fluid to be a by product of the meds, and NOT related to any malignancy.
6. Jake's brain to be clear of cancer and never to see it again!
7. Jake to feel like sitting up a little more and playing.
8. Jake to receive his earthly healing!

We BELIEVE God can do all of this. We await the glory of the glory of the LORD to be revealed. MO

Friday, May 19, 2006 10:25 PM CDT

I can tell you Staci had a really good birthday! I swung by to pick her up around noon, and we went to South Haven to meet Dawn Pierce for lunch. We laughed a lot which was just good medicine for everyone! One of the things we got a kick out of was Staci's insistence on taking in her camera. I asked her did she want me to take a picture of her biting her roll or dipping her chip in salsa?! Then, I guess she could turn the camera on Dawn for a picture of her sipping tea! We were laughing as she said, "Look, it is a birthday, and at birthdays, you just need to take your camera!" We ended up taking lots of crazy pics that I will try to put on the site soon. Then......retail therapy. We thought we could keep some of it under wraps, but when we got back, Don had already checked the online banking balance, so no deal! It was a really good shopping day. We made a little trip to drop off some pendants that are needing to be fired and pick up some new ones to paint. When we got back to the room, Staci's sweet brother in law, Todd, had bought her a birthday cake. Jake was asleep in his dad's lap, which we like to see vs. being in the bed all the time. It is 10:30pm, and the boys just got back from the supper run, so that is about to happen! Oh, Don got Staci a beautiful diamond necklace with three little diamond drops that represent her three boys. It was a sweet, sweet gift.

Dr. Triplett has been the doctor who has followed Jkae since the night he did the initial intake almost two years ago. He is almost finished with this fellowship and will be leaving for his "real job" in St. Louis in June. He stopped in a little while ago and hung out with us. He admitted to us that he was VERY concerned about Jake last weekend, and had even given the on call doc his cellphone number because he thought the "fluid" around Jake's lungs was definitely malignant, and that he would deteriorate in a few days. Well, once again, Jake foiled them all! I told Dr. Triplett tonight that we have a slew of prayer warriors, and he told us that his mom is one too, and that she TOO has Jake on her prayer list. Let's just stop and say, Thank you, Jesus, for keeping on coming through; standing by our little Jake! Now to recap... there was NO fluid, only a gelatinout material that had to be biopsied. It came back CLEAR TISSUE today!! Dr. Triplett admitted he was pretty shocked! He now feels that perhaps the "new areas" in the last lung scan could have actually been an infection, namely pnuemonia, which could have also caused the high fevers. (After bone marrow transplant, pneumonia is quite deadly!) When the antibiotics (and GOD) took care of the infection, perhaps, it caused a "peel" was the result which presented as that gelatinous stuff that appeared as fluid in the xray. Now, what I am hearing is that there may be even less hepatoblastoma than they may have thought in the lungs. Are you hearing that?! That is exceptionally good news, because Jake's ANC is 0. Since there is no white blood cell count to send out stalkers to the tumor, then there is nothing going on in Jake to combat cancer... except Jake's angels protecting him!! There has been talk about transfusing white blood cells, namely neutrophils, to help battle the present fungus in Jake's bloodstream. Dr. Triplett also said there was no evidence of the "scary" Aspergillus fungus in Jake's lungs on ct scan. He said it is usually pretty obvious in presentation, so it must not be there. Thank you, God, and may I ask that you take a moment to pray that the lungs STAY clear of fungus! Anyway, there is also a plan to have the donor send additional marrow to help Jake boost his marrow into action. We DID find out that Jake's donor is a 25 year old FEMALE German woman. How bout that?! Now, a little hitch here is that she has to be willing to give MORE marrow and that she is NOT pregnant, which would prevent her from giving. Another prayer request!! Jake's marrow is so inefficient at this time that he is actually getting platelet transfusions twice a day. Bless his little heart, he is sleeping a lot. But, again, thank you, Jesus, there is much less pain! OK, I think I answered all potential questions... but if you have any, just ask, then I will ask around here and get the answer.

Tashia, Staci said thanks for the beautiful flowers (full of Gerber daisies, one of her favorites!!).

Alriiiiiiiiiighty then. Believe it or not, today was a HUGE hurdle. The docs were going to stop the process of trying to get additional marrow to fight the cancer if the biopsy had come back positive. Your praying, and God's grace, helped "the show to go on!" Do you see how important you are to us? God is so good to Jake! Jake is so precious, and such a little fighter. Lately, as he sleeps, I imagine that he is just "hibernating" a little until his body is finished working so hard so he can get strong again and play. Please continue to pray for Jake.

Thursday, May 18, 2006 8:48 AM CDT

Update 11:00am…… Jake is back in his room and resting. He came through sedation just fine. Interestingly, the surgeon found NO fluid whatsoever. Hmmmm… so much for all that new-fangled technology. Instead , the surgeon described what he felt as “gelatinous” , and took a few chunks of it for biopsy. He said it could be tumor (OH NO IT IS NOT!!) or it could be a “pleural peel”. Believe it or not, we are hoping for that! It is basically just a glob of gelatinous tissue that is in the pleural space (the space between the lungs and the chest wall). That beats the mess out of tumor! So, there again, another prayer request.

Staci wanted me to say thanks to Miss Libby who sent her flowers for Mother’s Day. Jake liked his balloons too. Having a little balloon fight with Jin was one of the first signs that he was feeling a little better. To Dianna and Bill Hardy, Staci said thanks so much for the special gift and for caring enough to keep coming by to check on the little champ. She further said that when all boys involved are feeling better, expect a visit to Olive Branch for a mean game of Monopoly. Austin and Peyton, Staci said I had better not forget this time to tell you thanks for the Chicken Little balloon and the cool race car stuff. You are both good friends.

Let me tell you something funny… Staci said the social worker, Tracy, who was assigned to them from the get go, came by to ask her if there was anything that she could get for her. (Staci said she has officially been upgraded from “cancer mom” to “poor ol cancer mom” since she has been in the hospital somewhere in the neighborhood of 40 days. ) Staci said, “well, you know, I was going to talk to you about a shelving unit and maybe a little kitchenette for our room.” I think Tracy took pause, and thought she was serious! The walls are really closing in, but she feels safe here, so here she remains until Jake is much better!

Ok, I have only heard of one person who got their necklace and cross. Anyone else? Let me tell you a good idea for when yours does show up. The pendants are on a jumpring and attached to a cord to wear around your neck. You could take the pendant off the cording, hot glue a pin back on it, and string a cute little plaid or polka dot ribbon through the top, ties in a bow. I think that would make the cutest little pin that could be put on your purse, jacket, baseball cap, etc. Just a thought!

Staci said she wants you all to remember to pray for Jake’s ANC to recover. He needs some immunity to fight off fungus that can go haywire pretty quickly. The prayers of the faithful will make the sick person well!! Offer em up, Believers. MO
Sorry, Miss jane... You have those cell numbers... use them!! When I am not here, I all at least 5 times a day, no lie!!

Ok, well, Jin called me yesterday evening and said Jake was holding (clutching!) a soft taco. He ate a Nutter Butter and was drinking Dr. Pepper. He had been up in the bed playing with her and making funny faces, and throwing his hands up when he whipped her in games. So, I KNEW it was going to be a good night!

When Todd and I got here, we had to stop by the nutrition room prior to going in the room, because Jake had called me (first official conversation in several weeks!) and wanted "two soft tacos, cheese and sour cream". Staci, in broken English, tried to hint to me that they had the makings for this in the fridge in the nutrition room. Because if Jake is expecting Taco Bell, then that is EXACTLY what he wants! Anyway, she had it planned down to how she would slide us packets of hot sauce when we got in the room. Jake wouldn't eat them anyway, she said, he just knows what he wishes he could eat, and is very specific. Todd and I meticulously fixed the king his dinner (first rolling the tacos, then having an epiphany about how Taco Bell actually folds theirs in half!) We tapped on the door and peeked through the blinds, and he was grinning ear to ear! HE was definitely excited to have visitors. The nurse just couldnt' believe the change in him last night. We played several puzzles and several games.. even ones we had no idea how to play, but Jake insisted. HE sat up the whole time! Now remember we didn't even get here until almost midnight, so somewhere around 2:30am, we started getting ready to go "night night". Todd headed to the Target House... and... well, I don't like to brag, BBBBUUUUTTT, Jake wanted ME to sleep with him, so Staci headed off to the parent room, and Jake and I, again, went to sleep holding hands. He is the most precious little thing.

`Ok, medically speaking...
Remember the fluid in his lungs. Well, from what I am gathering this morning, it is fluid AROUND his lungs, and it is not that uncommon when kids are on as much medicine as Jake is on. It is WILD that medicine alone can change a kids appearance so! I don't think you would recognize him if I posted a picture. The steroids have him extremely swollen, and the stupid radiation burned his scalp, face, adn ears! He is peeling all over! Back to the lungs... Jake had an xray yesterday, and there was a shadow or sorts on his chest wall. They don't know if it is fungus or what. They plan to check it out this morning. In fact, I just left Staci and Jake in xray where they are doing another one to determine where the extraction will occur exactly. He will have a thoracentesis in about 30 minutes! A big fat needle going through the gap in his ribs to pull off fluid. Then, they plan to biopsy the fluid. Now would be a good time to stop and pray that no hepatoblastoma cells are in that fluid. GO ahead, I'll wait!

Ok, I am also praying that it doesn't make him sore the rest of the day since I am ready to play!! To kinda wrap it up, Jake still has tumors in his lungs that are just waiting to be killed by the bone marrow transplant. He is on so many steroids, to fight the GVHD, that his marrow is extremely suppressed! In fact, he is getting blood and platelets about everyday now. UGH!! His ANC (immunity, remember?) is 0! This makes him highly susceptible to all bugs! So pray also that those angels are just hovering all around his rooms keeping him safe and free from infection. We know they have been there before!! Last, the fungus now has a pretty good chance of catching hold, as does the YEAST they found in him yesterday, since there is no immunity to fight. We need that marrow to crank it up a notch. Dr. Leung is talking about contacting the donor to get more cells to transplant to give his new marrow a boost. And in the meanwhile, we are praising God that his belly is not cramping (NONE last night!!) and that we are seeing his happy spirit again.

Oh, and I apologize, because I think people may have wanted to send a card (and it is NOT too late), but tomorrow is Staci's birthday!! Big number 33! We will be celebrating at the Jude!!!

Mo

Tuesday, May 16, 2006 9:11 PM CDT

Well,
As far as I can tell, there is a lot of good news...

Let's start with the respiratory system; Jake's oxygen sats have been 100 percent without oxygen support. He is breathing well, deeper and more slowly; thus less labored. There was some talk of "draining the lung", but there was also talk of the problem just "presenting itself" in the way of more labored breathing, etc. So... we are praising GOd for the breathing getting BETTER thus absolutely "presenting itself" as NON-problematic, and NOT tumor related fluid.

Neurological: Jake's docs came in today and called themselves "the barers of good news". They said the MRI showed good response to treatment. Jake's scans still show areas in the brain, but apparently the density of these spots has changed, thus perhaps dead cells. That is what we are claiming! Staci said some spots were gone, and none had grown. From what I can gather, the overall impression from the docs was a positive one.

He is staying asleep the majority of the day, but Mom thinks he just majorly has his days and nights mixed up. He even asked her in the middle of the night last night if it was dark outside. Remember, he doesn't leave his room, and has been in the hospital for more than a month. There is no window in his room. Poor guy!

Gastrointestinal: Jake ATE an oreo!! Woohoo! He is still having a great deal of pain as he cramps throughout the day and night, but at least it now seems to be productive. Jin says his BM's have more "consistency" and aren't always purely liquid. I would have to think that this is improvement.

There has also been a fungus detected. I think it is Aspergillus. Jake has been on anti fungals FOREVER! However, after finding this fungus through routine bloodwork, and finding it early, they have changed his meds (or probably just added a new one!!), so they are optimistic that they can prevent it from heading to his organs. Lord, have mercy!! Is there ANYTHING this boy hasn't had to suffer?! OK, God, I didn't really mean that!! We are grateful and BLESSED! Sorry.

Todd and I are heading north tomorrow. Jake will be beside himself to see his Uncle Todd. By now, Mo is probably "old hat"! One of my former employees and a dear friend, MIshka,(also a BELIEVER from the guestbook!!) is coming in to cover my patients so that I can "stay awhile" in Memphis. She and her son, Samuel, are actually flying into Monroe from Colorado to help out. Thank you so much Mishka, and the people at work (MELISSA, Shawn, Karl, Christin, and Brandon) who made this happen. I should be able to stay through the end of next week, so I will have some FIRSThand information to share.

Our boy keeps on keeping strong in the battle. I just want him to FEEL better so he can have a fighting chance. We just keep remembering that God is holding him UP!! How else could Jake's survival be explained?! Let's recap... 20 rounds of chemo, 3 rounds of double dose radiation, 2 brain surgeries, 3 lung surgeries, liver tumor resection, and a bone marrow transplant. That is a LOT for anyone to endure. Jake is a Warrior; a HERO; and a Champion! He is a child of GOD!! MO

Tuesday, May 16, 2006 9:11 PM CDT

Well,
As far as I can tell, there is a lot of good news...

Let's start with the respiratory system; Jake's oxygen sats have been 100 percent without oxygen support. He is breathing well, deeper and more slowly; thus less labored. There was some talk of "draining the lung", but there was also talk of the problem just "presenting itself" in the way of more labored breathing, etc. So... we are praising GOd for the breathing getting BETTER thus absolutely "presenting itself" as NON-problematic, and NOT tumor related fluid.

Neurological: Jake's docs came in today and called themselves "the barers of good news". They said the MRI showed good response to treatment. Jake's scans still show areas in the brain, but apparently the density of these spots has changed, thus perhaps dead cells. That is what we are claiming! Staci said some spots were gone, and none had grown. From what I can gather, the overall impression from the docs was a positive one.

He is staying asleep the majority of the day, but Mom thinks he just majorly has his days and nights mixed up. He even asked her in the middle of the night last night if it was dark outside. Remember, he doesn't leave his room, and has been in the hospital for more than a month. There is no window in his room. Poor guy!

Gastrointestinal: Jake ATE an oreo!! Woohoo! He is still having a great deal of pain as he cramps throughout the day and night, but at least it now seems to be productive. Jin says his BM's have more "consistency" and aren't always purely liquid. I would have to think that this is improvement.

There has also been a fungus detected. I think it is Aspergillus. Jake has been on anti fungals FOREVER! However, after finding this fungus through routine bloodwork, and finding it early, they have changed his meds (or probably just added a new one!!), so they are optimistic that they can prevent it from heading to his organs. Lord, have mercy!! Is there ANYTHING this boy hasn't had to suffer?! OK, God, I didn't really mean that!! We are grateful and BLESSED! Sorry.

Todd and I are heading north tomorrow. Jake will be beside himself to see his Uncle Todd. By now, Mo is probably "old hat"! One of my former employees and a dear friend, MIshka,(also a BELIEVER from the guestbook!!) is coming in to cover my patients so that I can "stay awhile" in Memphis. She and her son, Samuel, are actually flying into Monroe from Colorado to help out. Thank you so much Mishka, and the people at work (MELISSA, Shawn, Karl, Christin, and Brandon) who made this happen. I should be able to stay through the end of next week, so I will have some FIRSThand information to share.

Our boy keeps on keeping strong in the battle. I just want him to FEEL better so he can have a fighting chance. We just keep remembering that God is holding him UP!! How else could Jake's survival be explained?! Let's recap... 20 rounds of chemo, 3 rounds of double dose radiation, 2 brain surgeries, 3 lung surgeries, liver tumor resection, and a bone marrow transplant. That is a LOT for anyone to endure. Jake is a Warrior; a HERO; and a Champion! He is a child of GOD!! MO

Monday, May 15, 2006 9:47 PM CDT

Hey did you see that corner?
Jake neither... because he is rounding it!!!

Did you like my little joke? Well, Jin says she undoubtedly feels like Jake is better than he was two days ago. However, she continues to say that it is absolutely heartwrenching to see him in so much pain when his stomach cramps... and that is all day long. Last night, Staci was up with Jake until 6:30am due to his crying out in pain. Today, he had PT, and it was told to me that he stood in the bed to play a few games. Jin said he did NOT like it, but I reminded her (and I have a bit of experience in this area!!) that he doesn't HAVE to like it... that is their JOB! I hope they come in every single day. I am hoping also that they continue to press him on!!

Tomorrow is the big follow up MRI. It will show the progress of the radiaiton. OK, folks... we need a CLEAR brain! We can't really have any residual tumors... there can be no more brain surgery right now, and I doubt very seriously that he can take anymore radiation either. So, let's name it and claim it!! Jake will have a CLEAR MRI tomorrow. He will have improvements physically and mentally. He will develop a renewed spirit and show his smiles and laughs soon. He will have decreasing pain in his belly and resolved GVHD of the gut. And he WILL be healed here on Earth. (oh, and there WILL be a big party to celebrate it!! With a big ol' sign, that says "To God be the glory" and a cake with Madagascar, and DOra balloons, and all his friends there....)
MO

Sunday, May 14, 2006 11:29 AM CDT

Jake is still hanging in there. Yesterday was pretty uneventful. He was awake a good bit of the day but not very active. We did finally convince him to take a wagon ride to the second floor and listen to the jukebox. He has a fever this morning and is getting blood and platelets.

I would like to wish my wife a very Happy Mother's Day. Staci, I know this is not how you want to spend your Mother's Day but knowing you there is no doubt that you will make the best of it. Our boys are so blessed to have you as their mother. Your love and dedication to them reflect in the fine young men that they are. Please know that I'm here for you. You mean the world to me and the boys. You're such a strong, beautiful, young woman. Keep fighting and as always I'm right there with you.

I would like to wish all Mothers a Happy Mother's Day. A mother is an amazing thing and I was fortunate enough to be one of the children of the greatest mother. Even though she is gone from this earth she is still right beside me in every move that I make. I know she is so proud of Staci and the care she provides for Jake. Mom - I love you and miss you more each day. I'm keeping my promise to you and each day my little warrior is getting closer to his complete healing here on Earth. Thanks for always being there for me.

Please keep Jake in your prayers. He is struggling right now but he is fighting so hard. Say a prayer for Staci today on her special day as no mother should endure what she has to do on daily basis. God bless her!

BELIEVE,
Don

Friday, May 12, 2006 11:52 PM CDT

O-KAY, Jenn-i-FER!! Here is your update!

Staci told me today that Jake's CT scans yesterday (oh, did I forget to tell you about them?) came back showing a clear liver. Staci was a little worried about why they were scanning the liver, but anyway it was clear. However, the lungs show fluid build up, particularly in the right one. The way it was put to me is that it could be just fluid, or it could be malignant fluid. I assume this means that one of the tumors could be secreting fluid, and since the tumors are there to stay, for a while anyway,this could be life threatening IF it is the source of the fluid and IF it persists. They won't really know what kind of fluid it is until a couple of days. I kinda gather he will either get better or get worse. Staci DID say that they could suck the fluid out, but she also said if it is related to malignancy, they are using words like "Just keep him comfortable." Sorry, NO! Jake is going to be fine! I think he just needs to move a little. He has slept the majority of the day for the past week! He hurt too much to even sit up! I am praying that they just saw a glob of fluid from where it is settling due to immobility! Hey all you nurses, couldn't that be the case?! Anyway, let's claim it GONE in Jesus's name! Join me, right now... go on, claim it, I will wait!

Ok, now, that is handled!

Jake saw Jin playing her laptop this afternoon and said, "WHat are you playing?" When she showed him, she asked if he would like to play. He shook his head ,"no". Then she said, "would you like to play one of your games?" Again, "no". Then he seemed to think a minute and changed his mind. He put in his Tonka game and played a little while. The nurse walked in and Jake said, "Jin, look at her shirt." Her scrub top had the Incredibles on it. She asked if he would like to watch his movie, and he said yes. WHen trying to get it going, she kept hitting the wrong button on the TV. She said, "Am I doing it wrong, Jake? Do you need to spank me?" He said yes, so she stepped closer, and he "spanked" her hand! I am just so glad that he is being a little "playful". THeeennnnn, he asked for water. Jin stepped across the hall to the nutrition room. When she came back in the room, he was "hiding" from her under the covers. That has always been one of his FAVORITE games!! He hides EVERY time someone new shows up at his house, the Target House, and his hospital room. It was so good to hear he was trying to tease her.

Staci said she thinks maybe he is in a little less pain. That just has to be the case considering the slight change in personality. I do not want him to lose his fighting spirit, although most anyone would see how he could. I am afraid most of us would have given up a long time ago! He is a champ!! His eye is better, and did I tell you his buddies are OPEN! I know I did, I just wanted to say it again, so I can claim all those little miracles!!

The focuis tonight is for Jake to have clear lungs in a day or two. He needs to cough and move and get those suckers clear. The right one is the bothersome one, and the tumors that have shown up lately were in the left one, so I think that is a good sign. Please continue to pray for him to be painfree and for his spirit to soar! Mo

Thursday, May 11, 2006 10:06 PM CDT

Boy am I ever full!! We just got back from celebrating with Hunter man for his birthday dinner. MimMim, Hunter, Hayden, Todd, and two of Hunter's friends were celebrating together. I cannot wait until the WHOLE crew is celebrating as Hunter turns into a teenager, same time next year... it is a date, huh Staci?!

Jake has pretty much been asleep all day long. Staci said this is probably due to a couple of factors. First, he stayed awake until about 3:00 am watching tv. I think that may be progress... just that he wants to watch tv. Also, He had quite a bit of hullabaloo today. He had his LAST radiation! yes, you read right! Mom said they were in radiation, and she said, "Jake, just today's picture and one more, then we are finished." The sedation nurse said, "Well, we were getting the balloons together for today." Mom sprinted back up stairs to get the camera, and they got to celebrate hopefully his last radiation ever.

He is having fever, but only in the low 100's. The last 104 reading was yesterday in the early afternoon. Other than temp, his vitals look really good... to me, that equals medically stable! His breathing has finally slowed down and is deep. His heart rate slowed down with it. I pray that is because he is in less pain. Staci had them decrease his pain meds yesterday, but they were ramped back up today. His buddies are OPEN!! The TPA worked wonderfully, so there is no longer a clog at all. Thank you, Jesus! Staci says his diarrhea has slowed down a good bit. He was having this pretty constantly, and now it is coming and going, and even when it is coming, it is with less intensity. I think that HAS to mean the steroids are helping with the GVHD. She also says there has been no more blood or "tissue" in teh diaper, so the sloughing off is also history! Thank you, Lord.

Oh, let me tell you about Jake's visit with his best friend, Emma Lou. When they got there, as expected, he was in the bed and not very alert. They sat Emma Lou in the bed with him. He reached under the covers and pinched her toe. Twice! Then he gave her a little grin. I am so proud that he still has his funny little spirit even when he feels so rotten. He wanted to let his buddy know that he loves her and that he appreciates her coming to see him. Thank you, Miss Paula, Miss Mandy, and Miss Kori for going to visit. Jin is still up there, and she was able to let Don and Staci go out to eat this evening. A few of her friends are going up tomorrow, and she should be back Sunday. Then, I believe, Aunt Marina is entering the rotation!

I have had several questions regarding the pendants and crosses. If I am not mistaken, the first batch went out this week. The whole idea came up because Staci was expecting to spend 100 days in the Target House, wiht Jake running around playing, so she could paint, paint, paint. Instead, they have been in the Target House maybe a total of two weeks, with the rest in ICU's at LeBonheur and St. Jude. Although she has been painting even there, the whole process of getting them back to the shop to get them refired, glazed, etc. was greatly slowed down. Then, they have to find a ride home to MimMim and Nancy who are adding the clasps and ribbon to the charms. Then, there has to be a hookup with Uncle Eddie who is the "shipping department". Sooooo, please be patient. On behalf of Staci, we DO SO APPRECIATE your ordering to support Jake and Staci. If you need yours ASAP for some reason, let me or Don know and we will try to get yours out soon. Thanks...MO

Wednesday, May 10, 2006 1:21 PM CDT

OK, keep those prayers going up!

Jake is now out of isolation. This basically means no one has to wear gowns and gloves in his room, and when he feels like it, he can leave his room. This may mean nothing more than wheeling around in a wagon, but I pray he gets to see the sunshine soon. The docs used TPA in his buddies yesterday. They basically decided that the risk associated with the blood thinner is less than the risk of putting him through a procedure. Thank the Lord! I haven't heard if it worked or not, but they left it in his buddies overnight to try and make dang sure that it opens it. I have been failing to mention, and I kinda hesitate to mention EVERYTHING that is going on, except that I know it spurs you to pray specifically! Jake's eye started getting matted last Saturday. Mom says he cannot open his right eye. It is sealed shut, and he throws a fit when they try to wipe it with a warm rag... and I mean "fit" to the degree that it is not really worth it. Mom says since he sleeps most of the time, it is not all that important anyway. (Nevermind, while he was out for his radiation, Staci worked on it, and it reportedly "looks better than he has in the past couple of days." He has new eye drops to use daily and a new salve to rub under his eyelids to help with the matting when he wakes up. I bet that is going to be FUUUUNNN!

He better be waking up soon, because his best friend, Emma Lou should be walking in the door any minute. Her mom told me that she packed her Barbie sleeping bag and pillow, because she said if he can't go out of the hospital with her, then she was going to sleep there with him. Isn't that a precious little friendship? They are both four and were born only a couple of weeks apart. Speaking of birthdates... tomorrow is Hunter's big 1-2!! Getting close to being a teenager!

It has been confirmed that Jake has GVHD of his gut. No, Staci actually called it, "severe GVHD of his gut". Bless his little heart. He just started high dose steroids today, and the docs say they expect these to work kinda quickly. Then, he will have split doses tomorrow, and some sort of step down phase until he is off them again. Remember he just went through lots of steroids and a step down phase following his brain surgery to prevent swelling. Madelyn Beamon, our friend at st. Jude, also had to "resort" to the roids after BMT, but her mom said despite their kinda wanting to hold off on them ( due to the halt it will put on any anti-tumor activity of the marrow), it was short-lived, and Madelyn responded beautifully to them. I think back to our dear little friend, Madelyn, and remember when she was really struggling on a vent for 12 days, (I think), and she is now running and playing and loving life. So, there can be a big ol light at the end of a long, dark tunnel!! And we are looking to it!

Jake has endured 13 days of double dose radiation, and has only 2 days to go. He has been on a countdown, and will tell you , "Only 5 more pictures." So, pray with us that that indeed is the truth, and we will be finished with radiation forever! Also pray that it has been effective, and that Jake's little brain is nothing but a big mass of genius!! NO errant cells, because they have all died from radiation!!

Eye matting to clear up.
No brain tumors.
GVHD to clear up quickly, for
No pain
and so we can get rid of the roids.
An appetite to develop
A spirit of play to return
Lung tumors to go away due to the BMT, vs. being
easy to get surgically (when the time is right)
a comlete and total healing on earth!!!!!!!!!!!!!!!

Mo

Tuesday, May 9, 2006 1:22 PM CDT

Don, I am real;ly sorry, I "added new journal" before I eralized I hadn't hit "Edit page." I had every intention of just adding to your journal, but too late now!

Celeste in TN, you had me at "hello"! Thank you so much for your empowering words. Write them again tonight! We NEED encouragement in the way of positive Christians, claiming scripture and being confident in the power of our LORD.

Our family, as a whole, is struggling a little right now. Jake hurts practically non-stop. WHen you have a four year old who understands what pain medicine is and how it helps him, it just isn't fair. He wakes up all during the night wailing with pain. He seems to try and stay asleep, as it is all more tolerable that way. Don't we all know how that feels? Well, Jkae is sleeping around the clock. He barely even tries to talk, and there has been NO play since about Thursday. Staci should be hearing about the scope today. It is CLEAR that the problem Jake is having is in his GI tract. He is clearly telling the docs and nurses that his "stomach hurts". There should be absolutely NO confusion about where he hurts! He is poopooing out blood and clumps of what I will just call "tissue". In between all this, he throws up several times a day, and when he can be aroused enough from sleep, Staci has to force oral meds downo him. It is really almost too much to bare... and I don't even have to bare it... Jake does. All I have to do is hear about it. Staci and Don have to watch him suffer everyday.

SOOOOOOOOOOOOOOOOOOOOOO.............
Prayer Warriors, start your engines. There is nothing in his "cancer" that should be making a GI problem this paramount. So, one would think that it could be addressed and FIXED! The scope should show information regarding the possibilty of this all being caused by graft vs. host. The rotovirus was the suspected culprit, so no real action was taken for about 2 weeks while the docs thought it had to just run its course. Who knows what rotovirus can do to a gut anyway? His belly is very swollen, and last night he had a 103 degree fever. There is something very inflammatory and harmful goign on , and we need to find out what it is!!

That is our prayer. Please join us in praying that Jake's suffering is short-lived. Pray for him to be pain free because the docs will figure this all out and start in the right direction. Pray for a return of Jake's sweet, lively spirit, not only for himself but also to encourage and motivate his parents. Pray for those buddies to stay open. Only 6 more days until TPA. (It is a battle with every blood draw, and VERY frustrating and fatiguing for Jake.) Pray that they let him out of his room SOON. He has had three negative rotos, but now the docs are sayign that since he still has diarrhea, he can't leave isolation. Who knows if it even IS diarrhea?! He doesn't eat ANYTHING solid, so how is he expected to make a solid stool?! It is not all day and night like it was, so does loose stool actually constitute diarrhea?! OK, we are really, really leaning on you. Please pray. We BELIEVE God can heal Jake AND bring him out of this valley! MO

Monday, May 8, 2006 9:10 PM CDT

Quick update as I'm headed to bed. Jake is getting by. He is now on a constant pain pump for his stomach. He is running fevers more often. He feels miserable and sleeps most of the day. If you catch him at the right time when he is feeling better then you get a quick glance at that beautfiul spirit of his. It is breathtaking.

Radiation and scope of belly went OK today. No results from scope and not sure when we will hear. Four days of radiation left to go.

I'm really sorry for the short updat but I'm beat and must get some sleep.

Thanks for checking on Jake.

By the way, Staci's weekend was great. All the boy's games were rained out which gave them more time at the mall. Maybe I need to see if I can work triple shifts. Just kidding. She had a great time with the boys and I hope before long we are all home.

Believe,
Don

P.S.
Mo - feel free to overwrite this.

Friday, May 5, 2006 10:45 PM CDT

Ok, if you missed yesterday's update, it is full of informative medical stuff that may be helpful in understanding some of what I will talk about tonight. Remember, believers, gotta keep up to ride this train!

Staci is home home, and she sounds like a new woman! There is so much energy in her voice, and I should know since she calls to check on us about every hour! Today, she had called three times by 10:00am, and she KNOWS we try to not wake up that early. Jake can't drink before sedation, and his radiation was at 1:00, so we try to let him sleep as long as possible... anyway, she and the boys were just leaving the movie. They had been out to eat also. Hunter and Hayden have ballgames tomorrow, and I think that is actually the highlight of her trip home. Hunter also has a make up game on Sunday afternoon, so Staci should have time to catch it too before getting on the plane. Jake only asked about her in the beginning. He is smart cat, and "I'm no dummy" certainly applies to him! He had her on the phone today, and was saying, "Where are you AT?" I started trying to distract him because he was getting a little obsessive with the question, and I could just imagine the dancing around the subject Staci was doing on the other line! It worked! Now, he mostly just wants to know where Dad is at all times. However, he DID let Mo sleep beside him two nights in a row... AND we held hands as we went to sleep. Awwwww!!! Staci had a massage today, shopped for plants which will be put in by a gardener tomorrow (set up by her adorable big sister), and finally bought the boys pics from the photo shoot which is posted on the link below. Don about panicked when he heard how much money she had spent, but I tried to remind him that averaged out over a MONTH, it isn't so bad. She hasn't spent one red cent since she has been in the hospital non-stop. AND... retail therapy from time to time does the heart good! I think another of her splurges was the Dollar Spot at Target. You gotta love the Dollar Spot!! Poor, poor Don told Staci, "I have my double hip replacements scheduled for later in the month. Can you be there?" Staci replied, "You can't have yours before I have mine." They are both referring to the hip pointers you get from sleeping on the pleather relining couches in the hospital room. Staci now travels with an egg crate, though, and I must say, that helps A LOT.

Jake had PT today, and her walked the equivalent of about 10' with both of his hands being held. He was hacked off every step of the way!! The PTA, Janet, who came in did a great job of just distancing herself, and making him do it. I told her that even though I am a PT, and typically can connive any kid into doing anything, I am just a plain old softie when it comes to Jake! I cannot make him get out of that bed. His breathing is MUCH better. He has been breathing so quick and shallow lately, and quite frankly, it had me kinda scared. Tonight, his breaths were deeper and there was less accessory breathing, i.e. nostrils flaring, and neck muscles "pulling air". He seemed to be resting better! Remember me saying that Wednesday night I changed probably 8-10 diarrhea diapers? WEll, last night, I may remember only two. ANd he has only had a couple changed today- TOTAL! I think he may be turning a corner, or at least that is my prayer! His belly remains distended and swollen, and his stomach cramps are actually WORSE. Today, if he hasn't been asleep, he is asking for pain meds because he has been in a lot of pain. It is consistently his stomach, so I have really beeen wondering what the hold up is with the GI doc. He finally came in today, and has scheduled an endoscopy Monday, planning to coordinate it with the sedation for radiation. Because the stupid rotovirus reared its ugly head, they needed to wait and see if that was the sole reason for all the diarrhea and gut problems or if it is actually GVHD. Now that he is showing negatives for roto, and the diarrhea is persisting, they will need to biopsy the tissue to confirm the GVHD. I think it is highly coincedental that his skin is flaring up and the diarrhea has been so relentless at the same time, for it NOT to be GVHD. The big quandry will be whether or not to treat it with steroids, which SUPPRESSES the German marrow's effectiveness on graft vs. TUMOR!! Jake had his 10th day of double dose radiation today. 10 down, 5 to go!! Come on , baby, you can do it. It is really overwhelming, the whole process! Nothing to drink all day, sedation, waking up from sedation (usually grumpy, and lately throwing up!), then hurting and needing pain meds.... not to mention what it is doing to his poor skin. OK, I am through wallowing. That is the radiation that is going to RID him of brain tumors, so I should embrace it!! For the last two nights, Jkae has had a pretty high fever. Upon last check, just a little while ago, it was just over 100 degrees. They can control it with Tylenol, but controlling it isn't as good as figuring out what is causing it and treating that ! They added another antibiotic today, so we will see. Also, DON DREW BLOOD from the buddies. Way to go, daddy!!

I do NOT want to lose my update, and am running out of time, so I am going to save this, then come back in a bit and finish it. see ya momentarily. MO

HA! I outsmarted it. There is a time limit on the St. Jude computers, and all you St. Jude moms KNOW what I am talking about when I say I proudly saved my update without it blinking me off in the middle of it.

On with the story... Our night nurse looks just like Queen Latifah. In fact, I don't know her name but Don and I are affectionately just calling her "Queen". She told us that one of the teenagers on the bone marrow floor actually took a picture of her and emailed it to his friends. He then brought back all their responses to show her. They were just so impressed that he had met QUeen Latifah at St. Jude. Anyway, boy do I ever digress!! Don told Queen, "If I am asleep when you go to draw labs in the morning (scheduled for 6:30am), remember to flush SLOWLY! He is the new expert! He really was SO very patient as he tried different positions to get that blood to seep around that clot. Only 9 more days before we can ask for TPA (the blood thinner) to unclot that line. I have already asked Queen to start praying for Jake's lines for the 6:30 draw. I pray ALL over him when ANY draw is necessary, then, loudly and publicly give GOD thanks for letting us get it. Speaking of blood cultures, there are still two that have not come back. We are trying to wait and see if anything grows from the samples from his buddies, (please, Lord, don't let there be a line infection), and the third and final negative stool sample has to be obtained in order to get out of quarantine. Come on, baby!!

Staci, you would probably get a kick out of my going to pick up our dinner tonight in my PJ bottoms. I went down the road to Westy's. I asked Don, "Can you tell these are pajamas?" He said, "No, STACI!" Apparently, you hang out in your pj's all day too. I never even blink when I am all around the hospital in them. I figure this is really kinda our world, and all the other folk are visitors. After all, this is where you eat, sleep, use the bathroom, wash your clothes, etc.

I have lots to tell you about what Jake has been saying when he is hyped up on his pain meds, but this update is looonnnngg! I will tell you about that tomorrow. Make sure you print out today or yesterday's updates so you can have a good list of prayer requests to share Sunday morning at church. Just look at what praying for those buddies to be open has done... it has bought about two more weeks without need for surgery. PRaise the LORD!

Since Uncle Eddie and Madison are likely coming tomorrow, I will tell you that we were talking about his family and particularly who had bought him some new tranformers we were putting together. He said, "I like Madison." I said "You do?" He said, "Yep, I hide and he comes and finds me." Then he said, "I like Uncle Eddie too. He comes and finds me too." Isn't that sweet? Ok, so NOW if you don't come, you will be plagued with guilt!! Just kidding, but I have to leave tomorrow evening, and I am ALREADY plagued with guilt!! UNCLE TODD... I AM CALLING you out! You better come stay with this boy next week. He has been asking about you!! He told me he wanted you to come see him! Jin, for the record, I CAN count to 25, and we have been practicing in our numbers book when I can get him to sit up in bed and play. We are counting, tracing, and writing our numbers. Well, I better get going, he and dad were left in the room watching racecars. Oh, one more cute story... this afternoon, Don wasn't in the room, and Jake was dozing, so I snuck the channel to Oprah. He woke up, and dad was back at his side, when he said, "Dad, is that Oprah?" Don misunderstood him and said, "Yes, son, it is almost over." He said, "MO, I don't want to watch Oprah. Can I watch cartoons?" Isn't he a hoot?

Please pray specifically for his gut and belly to heal, chill and fever to be nil!! I hate seeing that baby in pain. It just isn't fair! MOMO

Thursday, May 4, 2006 3:21 PM CDT

Friday morning: They got blood!! That is one more morning down without a surgical procedure. Keep those prayers coming. That was really the number one stressful event that I was dreading without Staci here. So far, so good. Jake also had fever all night... as high as 102.9. They can't seem to figure that one out yet. We talked to the doc today about the GI doc soming by for the scope they have been talking about since Monday. She said it probably won't be today either. Pray for his gut to heal, GVHD to chill, and diarrhea to be nil! (Like that little rhyme?!) Oh, and thanks, Brandi (Madelyn Beamon's mom) for the hot chocolate this morning. What a nice surprise to wake up to. Good luck, Madelyn, with all the oral surgery today. MO


Coming to you, live from Jake's bedside! He is watching Jake the Dragon on Disney Channel. Actually, Miss Gay, our nurse today just came in with a tray full of meds, and Jake is stressing! Oral meds are getting just plain ol' OLD to him! It makes him pretty miserable to just think about what is coming when he looks at all the oral syringes facing him. It was really something facing him. He looks pretty worn down. His hair is growing back- dark! His incisions on his head are looking pretty well-healed. He has qutie a bit of GVHD on his arms, thighs, and neck. He itches fairly often, but thank the Lord, his cream seems to work great. It usually stops the incessant itching pretty quickly. Yesterday, just before I got here, a doc came in and did the "squat maneuver", probably gently touching Staci's leg, which always means bad news is on the way. It would have to be pretty dang bad to surprise this group! Anyway, Jake had scans yesterday and she came to report that there were new tumors in the lungs. As Staci calmly listened, she began a line of questioning that I think shocked the doctor! She wanted to know how the big tumor looked in the left lung. The doc asked,"Oh, you knew about that one?" Staci said, "Yes, and another one... they were on his last CT scans almost two months ago." She said, "Oh, I didn't realize there were any there before." SO, this morning, Staci reported all this to another doc, who said she would look into a comparison of the two scans. Then, Jake's primary bone marrow doctor, Dr. Leung, came by this afternoon and said that he and Dr. Triplett compared them, and feel that the "big" tumor may look a little more transparent, which is a good thing! It indicates less density of tumor. "There may be a few small new ones". But given the fact that Jake has been on so much steroid due to the brain surgeries, the "duty" teacher has been on guard so the bone marrow has not been able to be as effective as is expected. He is slowly being weened off this, and we are actually now seeing more GVHD, we THINK! His skin is mottled and red (and itchy), and his diarrhea is pretty relentless. The GI doc will be in this afternoon to see about scoping his upper and lower GI tract as well as possiby biopsying the gut to see if it is actually GVHD. Then, Dr. Leung says the real question is whether or not to up the steroids to stop the GVHD or let it rip a little longer, being careful to keep it at a safe level to prevent danger to liver or other organs. His liver enzymes are elevated which MAY indicate GVHD. However, it is around 2, and they don't freak too much until it is around 15. So, whatever that means, it seems we have a little more room before treating it with steroids. Jake can't be cleared from isolation (thus CONFINED to his room... no wagon rides, no light of day, etc) until he has three consecutive negative rotovirus stool samples. He has had two, but we can't get enough in the sample cup to get the third one. It is chronic diarrhea, but VERY liquidy and not solid enough to scrape up with a popsicle stick and put in a cup.... that is STACI'S job!! Doesn't that sound fun? Now, they are trying to get blood out of his buddies. This needs to stay at the forefront of your prayer requests. Jake had 102 degree fever yesterday, but they don't want to treat it, unless they know what they are treating, so they need blood samples from his red buddy and his white buddy. Talk about an art. Last night, the nurses were frustrated, and were about to call the "line nurse" when I suggested they go into the parent room, wake up Staci (at 5:00am) and have her try. She DID it!! Now, she is helping Miss Gay try again. She really amazes them with her nursing skills... PRAISE THE LORD, she just did it again. FOr every day that Staci can get the blood out, there does not have to be a surgical procedure to open the lines or place a new one. NOT FUN!! Staci is on a countdown, and says we are 10 days from one month post brain surgery which means he can have TPA (a blood thinner) in his line which is MUCH less invasive. Oh, bettter pray for me and Don to figure out all these tricks, so when she is gone (flies out today at 7:30), we can help. Jake's breathing is shallow and quick. No one seems to know the answer to this one. The sedation team says it has nothing to do with his being put out everyday. His sinus CT scan yesterday was clear, so that must not be the problem. Some say it is just due to cancer in his lungs, not allowing him full excursion of his lungs, thus less breath to expand, and more of them. Plan is for Don to be here in a couple of hours, and Staci to hit the air for a quick trip home. I have to leave Saturday evening, and Marina left just before radiation today. To try and explain a full day here would absolutely overwhelm you. I say that with some assurity, because I am not easily overwhelmed, and I CANNOT believe all that has to be done in the course of a day, and even moreso the course of a night. Maybe tomorrow I will diary what all has to be done in a single night. Sleep is NOT part of it. Jake wanted me to sleep in his room last night, so Staci got the comfy pull out sofa in the parent room next door. I had the honor of changing probably 10 diapers, including pads on the bed which were also soiled,and getting up at 11:30pm to get him to try to take his oral meds. Thennnnn, there was the middle of the night attempt at getting blood from the buddies which was VERY traumatic for Jake. He has to be posititoned a hundred different ways to get that stupid clot to move away from the buddy opening,so the line could be accessed. WHEW. Tired yet?

ON a "happy"note, Jake and I have colored, played video games, put together dinosaurs, read Miss Cindy's books, played with a giant bubble wand from Miss Mickey, and looked at a big box of goodies from Miss Janet Cummings. He got his goodies from Aunt Bonnie and Jordy, and thought the LHS hat was an LSU hat, so we didn't tell lhim any different for now. He thought it was so cool. He grinned really big when I showed him the baseball. A grin is a biggie these days! We also played a sticker book from Angel Holly, and opened LOTS fo goodies from ANgel Penni. Staci wanted me to be sure and thank the group of moms who sent her the money that they "would normally spend on their monthly meal together with each other and kids." The words from the moms to "an amazing mom" were very sweet and inspiring. Jake really liked the envelope art by Noah. He told his mom, "Look, mom, a motorcycle."

I leave you with a funny story...
Staci, Don, and Jake were watching a show called "Sweat, Oil, and RIgs." Don apparently told Jake, "Daddy does work like that, Jake." Staci looked up just in time to see a deep sea diver leaving the rig to head deep into the ocean. Staci said, "And just how do you think what you do is in anyway like that?" He proceeded to explain that they HAD been turning valves and such, and that she had just looked up when they were diving. "ANd, he added,"I also wear a hardhat." Staci said, "Oooooooooooh, so I am kinda like a Victoria Secret model, because I wear drawers." Oh, you can just feel the love!!

Well, Jake is ready to read Elephant Emma Lou again! He LOVES that book...probably misses his buddy, Emma Lou. Oh, if you would like to see all these cool books written by his buddy, Miss Cindy, go to Alphakidz.com The ducks in her D book are wearing "Believe" necklaces!! Cool, huh?

SO, review the first paragraph for prayer specifics. As I remember, open buddies, no GVHD of liver or gut, diarrhea to stop, out of the hospital, happy spirit to return, no itching (GVHD of the skin), radiation to CLEAR the brain of tumors, and bone marrow transplant to clear those lungs!! Also that Mo and Don do fine without mom. That Jake doesn't recognize it, and get fussy. And that Staci has a very blessed time wiht Hunter and Hayden, with good weather, and a chance to see a couple of killer ballgames!! MO

Wednesday, May 3, 2006 7:54 AM CDT

Good morning to all.
Sorry about the delay in updating, and so sorry to those of you who "stayed up late" waiting on it. I will try to do better. I still don't have my reservations, yet am planning on somehow flying there this afternoon. Can you tell our family lives it moment to moment? I have had a lot of organizing to do in order to get out of town, so I have had late nights, dealing with work, etc., so again... sorry for the delay.

Marina is planning to head home Thursday morning, and that is also when Don is expected back in Memphis. Staci has about decided to try and get a flight back, which I think is a wonderful idea, considering that gives her an extra 8 or so hours at home with the boys! They don't know she is coming. It was less about surprise than it was about "what if something falls through", and not having them disappointed!

Jake CALLED me yesterday! Twice! He apparently feels a little better. I could hear spunk in his voice. He wanted to make sure I am bringing him "lots of presents". (We-and you- have created a monster!) He kinda just wanted to chit chat which was music to my ears!

From what I can tell, the buddies are still not wanting to cooperate. Jake has to be a month out of brain surgery for them to use the TPA, which is a clot buster basically, to open the clot in his lines. He is almost there, but because they do DAILY labs, and all day long, having those open is a necessity. This now becomes a big prayer request. Ask God to bust that clot open and make those lines crystal clear so nothing is required. He can't get out of the hospital until he is clear from the rotovirus, which I believe will be tested again today. He needs those "flash fevers" to go away. (Sounds like a new dance craze move!) and...don't forget to pray for some cooperation with PT so he will be able to walk and enjoy being out of the hospital. I guess you all can imagine that the number one, top, most important pryer request right now is for Jake to be cancer free, which requires the radiation to rid the brain of tumors, the bone marrow to rid the lungs of tumors, and the AFP to fall to normal.... nah, really the only thing it "requires" is a touch of the Master's hand and it will be DONE! AMEN? MO

Monday, May 1, 2006 10:39 PM CDT

I want to thank all of you who went to tn/christi's site to support Katie and her sisters. I can only imagine what they are going through. Today is Katie's 21st birthday too; the same day as her dad's funeral. Poor thing! I am so glad that we can all be connected by this big family of God.


Well, a new record has been set... Jake has spent 22 straight days in the hospital, while his last record was 17. Needless to say, he is pretty SICK of being inpatient. We were kinda hoping he would be discharged today, but he was having some "heavy breathing", so they wanted to keep him inpatient to monitor this. With a stethoscope, his lungs sound "clear". They were doing an xray this evening, and I haven't heard any results from that. We have to just CLAIM that it is nothing. NO NO NO to pneumonia! He is pretty grouchy... anyone would be after over a month on steroids. Poor Staci. When I called a little after 10:00 pm to talk to her, she pretty much just got frustrated and said, "I just can't talk now. He is screaming at me. I can't handle all this right now." She needs a big ol' timeout. She told me the other night that she had not slept a wink the night before. She said she was just hurting all over. She would turn one way and her arm would go numb. Then she would turn over and her hip would start killing her. I said, "Why dont' you just go get a massage? That is what you need!" She said, "Yea, Melanie, and while I am at it, I will get my nails and hair done, too." Funny, funny , ha ha. I was ONLY trying to be helpful... nevermind the realistic part of that dream. She may TRY to sneak back to West Monroe this weekend to catch a couple of little boys' ballgames. This may be a secret, so don't mention it to Hunter or Hayden if you see it. Sorry, Staci, I only told about a thousand people today! They won't tell! Anyway, Don is going to head back to Memphis Thursday evening. He hopes to have Staci on the road Friday bright and early before Jake ever wakes up. I may try to go up to give him a hand. He said Jake has his mom's little portable digital picture printer. Don said, "He can scroll through the pictures, pick out the ones he wants to print, select them, print them, then deselect them." What a smart kid! Don gave me the ol' guilt trip when he told me that he printed a picture of me and him in the bed back before his first brain surgery. He also printed a pic of himself and Todd wearing pajamas on their heads. I HAVE to go see that boy! Aunt Marina is the lucky one right now. She is up there to help Staci at present.

As far as the radiation goes, he just seems to be breezing right along. Just pray with us that the radiation is KILLING all that cancer. We want the follow up MRI to be NEGATIVE!! and we are waiting on a NORMAL AFP!! Mo

Saturday, April 29, 2006 5:44 PM CDT

SUNDAY 11:00AM

If you watch the NASCAR race today find the #18 Interstate Batteries Car(It is a green car). This happens to be Jake's favorite car because of the color and PawPaw met the driver this morning and he will putting Jake's Magnet inside the car with him. Everytime you see the car then say a prayer for Jake and for the Pittenger Family.

Believe,
Don


Sunday 1:33am Sorry for butting in, Staci, as I was so proud of both you AND Don for updating today, but this is a news flash...

Katie Pittenger is a young lady who has cooked meals for Jake and family, visited the Target House of two occasions, and signs the guestbook often. She lives in a Memphis suburb, and it is easy to tell that this girl has a heart as big as that city! She lost her mom to cancer last year, and really rose to the occasion of helping support her two younger sisters. When Katie visited, I could tell that she had a close relationship with her dad. Tonight, he passed away unexpectedly from what they are calling a massive heart attack. I rarely ask you to go to other sites, but would you please visit Katie's mom's site, which KATIE has so lovingly kept up since her mom's passing. Katie is beginning college, and is just starting on such a big, important part of her life. Without a mom or dad now, I know she feels that her life is just spiraling out of control. She has such responsibility already and has demonstrated such strength and maturity. Katie, know that we LOVE you and will do anything we can to help you. Our family has enough love to share with yours, that is for sure!! We are so proud of you, and I know your mom and dad are too!!

Please visit www.caringbridge.org/tn/christi and let her know that you are lifting her up.

Twice in on week!!! Well today it's me Staci. I know you haven't heard from me in quite sometime, and I'm sorry for that. It's been a little crazy!!!! As for Mo she does such a great job on keeping everyone informed and in the know!!! I am now going to apologize, she can be pushy at times, but when she wants something she stops at nothing until she gets it! If you feel pressured think about us who have had to live with her for 30 plus years now! I'm just picking Mo, but you called me out what do you expect? I am so glad to see all the responses we have gotten because fo Mo. It has been so uplifting to read all the entries. I could hardly believe, there were so many. Never feel like you have to sign, but Peg please tell your husband, some days the words are what get me and Don through the day. Just a quick hello I'm thinking about you, does so much for us. We could never express how much we appreciate each and everyone of you.

As Don mentioned Yesterday he talked to a group of Partners in Hope, these particular people have been giving faithfully each month for at least 9 years or more. We were very honorned to be asked to do this. Although since Jake has been sick we thought that we were going to miss out on this event. They called and asked if Don or I would like to at least join them for lunch. Don went and to his surprise he got the opportunity to speak. Afterwards I got 2 calls telling me how Don brought down the house. They said there was not a dry eye in the place and Don even got a standing ovation. Don has always been very passionate when it comes to his family, and I'm sure in lite of everything that's been going on, he was especially emotional. When he got back to the room he told me to go look outside in front of the hospital. WOW there was a huge banner with Jake's picture on it. Now that's surreal!!!!

Jake has been feeling much better and today even took a few bites of food. He talked to MO on the phone and told her to get up here and bring presents. Now that he's in the mood, I need to start bringing the boxes he has at the Target house. He will have thought he has died and gone to heaven. There are so many gifts.It will make his day. I know I have already thanked my church, for the care packages. But, wow we are still going through it all. It is very exciting and just what we needed. A little pick me up!

I,m a slow typer and there is a limit on the computers, so I better cut it off before I lose it all. I will try to come back later and type some more.

For now thanks for your continued support, we need it now more than ever.
I know Mo mentioned, but the orders will start to go out next week. Thanks for your patience.

BELIEVE,
Staci

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