Hi! we went to clinic for counts today. Jed did not want to hang around for results so we did the deed and ran. They just called from clinic and his ANC has gone from 200 to 4,000 since Tuesday!!!!!!! That is mostly from the GCFS I have been giving him and now that we can stop they will drop by half but still, he is doing VERY well....according to the blood counts! He does have a nice hacky cough and stuffy nose. I hope with counts that high it will vanish quickly. Tomorrow is the "big cook", he is cooking for my dad's birthday with his Uncle Adam, that is just about his favorite thing to do! Yea, after 4 days of a diet I am ready to eat! I think 4 days is my limit! See ya later, I have to give the Prince his bagel bites! Love Jed and Kristin
Hey the spell check button is working again!

Hey All, Jed was up for awhile but now is back in bed. He doesn't have a fever but has a really crappy cough and stuffy head. I am crossing my fingers against a fever. We go tomorrow for him to get blood counts. I guess that's it. Nice and calm...for now! Danny has a bad cold too, he very rarely gets sick so his cold is a big deal! But I think he'll be ok..he's tough! Gotta go...laundry calls...all the time! Love Jed and Kristin

Just a quickie.. Today is Hop's birthday (my Dad) Happy Birthday! Jed and Uncle Adam are cooking for him this weekend. Jed seems to be a tad better. He slept until about 3pm & he has been pleasant, even tried to clean his room! Poor guy there is just no place to put anything in there. The organizing fairy needs to come and fix his room..well while she's at it how about the whole house!!! We are headed out to get a bag of fried shrimp and a pizza FOR JED, not me...I had broccoli and rice and chicken..whoohoo.
Love Jed and Kristin

Hey everyone. well I have been trying and trying to upload a couple of videos but I am having some issues. Anyway, we went to clinic today and as soon as Holly saw him she thought he was going to go upstairs...that's how bad he looked. He slept until 5pm yesterday. He has been running a low grade temp. on and off. They gave him 2 bags of blood and a bag of platelets. He slept through it all...around 5 hours! Dr. Unger decided he should go home, good thing, there were no beds anyway! He still feels like crap but he is pinker! He is so weak and shakey. His little chicken legs are covered in bruises, poor baby. He had such a great time at THON, he really pushed himself to the limit. He made sure he got all he could out of the weekend! Thanks again to all our friends. Our organization placed 5th in totals and only missed 4th by a few dollars! They are just an amazing group.

Ya know, I'm watching The Biggest Losser and I have to say this, , good god quit crying already! Get over it! Ok, I just had to say that.

So anyway I guess that's it. I am not feeling very witty. I want chocolate and cookies and maybe some pudding, cake would be nice, donuts sound great and maybe a danish for the morning. Of course eating any of that is not on my list of crap I should do.......oh that sucks. Warm apple pie with ice cream is not on the list either. That sucks too. I gained 7lbs in the last month, it's gotta go before it gets out of hand..AAAHHH, ya know I really hate the chicks that say "oh, I am so stresssed I forgot to eat" or "When I am stressed food makes me sick". Yup that's a real problem...NOT. Oh my, I am not really as bitter as I sound, well only about skinny chicks!

I have to go, I am tired and the kitchen is calling, I hear the cookies saying "it's ok Kristin, we will make you all better come down and eat us"! They are evil and they lie!

I'll try the videos again tomorrow..oh yippy. Love, Jed and Kristin

Oh, just to make me feel better Jed is now watching Ace of Cakes.

AAAHHHHHH, we are home! I have many pictures and some videos I will post as soon as I edit them.

THON 2008 was incredible!!!!!!! Our organization Gamma Phi Beta and ACACIA are THE BEST! A Huge THANK YOU to ALL of you. Everyone was so nice and really awesome with Jed even in his meltdown moments. Cassie and Jared had a blast and of course Savannah loves you all!

This weekend was so much fun and so hard at the same time. Jed is not at the top of his game to say the least and he can only go for a little bit before he starts to melt down but you guys were just so understanding and took such great care to make sure he was ok...THANK YOU!

I hate to single anyone out because we love you all but KROB we will be lost next year without you. LV..oh my I can't express how happy we are that you are staying for another year! Liz, Laura, Suzy, Lauren, Britt and ALL of "our girls" thank you thank you. Brent, you are wonderful! Just soooo great! Dave and Jake and ALL "our guys" thanks for taking us in as your new family and making us feel so welcome. If I didn't write your name PLEASE know I mean EVERYONE I just suck at keeping it all straight.

A special thanks to our forever friend Dan Alexander. You will be a part of our family always. We will miss you next year...Please stop and see us ANYTIME.

To all the parents we met and those we didn't thanks for having such amazing kids.

LV's mom...love you!

As you can see I just can't say thank you enough. So when's the next THON???!!!

It was great to see families we don't get to see often and we met some wonderful new ones.

Stuter's, seeing your 3 healthy terrific boys makes me feel so good. Amy, send me your pics of our boys please! Thanks!

Ok, I have much more to say...as always but we can do that tomorrow.

Jed had so much fun,

THANKS AGAIN TO ALL OF YOU

How about that total!!!! Good God who woulda thunk it!!!!

Love Jed and Kristin

Hi . THON has begun! I will put up a few pics. We had breakfast at The Waffle Shop,,YUM! Then we got the kids checked in at The Hilton...woohoo and then we did what we do best..NAP!!!!!!!!!!! We headed to the BJC about 4pm, watched the dancers come in and went to hang out with them for awhile. Our organizations had a dinner for us at the Acacia house. It was so nice. They went to a lot of trouble and we all had a great time. Ok, so, they gave Jed the COOLEST gift EVER, a football signed TO JED from JOE PA!!!!!!!!!!!!!!!!!!!! OH so way cool..unreal! The look on his face when he read it was perfect. Brett worked some magic with that one!!!!! LV had a terrific cookie cake with Jed's name on it..it all was cool. THANKS TO ALL OF YOU!

Jed just finished eating his shrimp scampi dinner and raspberry cheesecake. Oh yea, can't crave hot dogs or mac n cheese, nope has to be " Grilled shrimp with a creamy white wine and garlic sauce served on a bed of linguine" and YES I found someone to deliver it,,,,,,HA I am so proud of myself! I guess the pizza dinner was just not enough for him, well he's full now. We woke Dan from his slumber to finish off what was left. So all is well.

Savannah is doing pretty good driving in the snow and slush oh, and living at The Hilton is all good too!

We met LV's mom tonight...she is really nice and looks just like LV.

Ok, I'm pretty tired now, I'm looking at the 2 beds in the room and Dan is in one and Jed's in the other...BOTH of them are stretched out in the middle, of course. Great.

Hi to all. I will put some pics up now before I fall asleep. Tomorrow Jed has his "wish", he is on stage with a rock group! This ought to be interesting.

Gotta sleep, Love Jed and Kristin

Jed the disco king!

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Oh yea, big party in State College!!!!!!!!!!!!! Get your Freak on

Jed plays air guitar in celebration

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This is Jed bouncing on the bed SOOOO excited to be here!!!!!

Hey!!!!!!!!!!! We are leaving TONIGHT!!!! Big snow headed here tonight and tomorrow so we are outa here tonight, gotta get there!!!!!!!!!!! Love Jed nad Kristin

Hello. So, today was a real adventure. Thank goodness Jed went to Nana's for the day. Ok, so Savannah was given an appointment to take her drivers test last Saturday, we got there and they were closed for the holiday!!! She made another appointment for today at 12:30 but it had to be in Gettysburg because York is booked until May! I picked Savannah up at school and we went to Gettysburg, we waited only about 20 mins, she took her test & passed with flying colors. They told us she HAD to stay and get her picture taken there..today. We could not go anywherelse or it would void her test. The wait time to get her picture taken was 3 hours!!!!!!! Unreal. 3 1/2 hours later it was her turn to sit in the chair. Right before it was her turn the woman doing the pictures traded jobs with the VERY old woman giving out ticket numbers. They were giving them out because they were afraid people would steal them! This woman had to read the computer screen with a magnifying glass NO LIE! Savannah signed her name in that little box and it would not register on the computer. They shut down the system and started it again...twice, it worked after the second reboot of the computer system. They took her picture and printed her license...it came out black and white!!!!!!!! This required a phone call to someone to walk them through fixing it. Again it printed black and white! One more phone call and it actually worked! We ran out of there. It was after 4pm. As we were leaving the police were pulling in, I think the mean lady called them because they close at 5pm and many people that had been waiting for hours were not going to get their pics taken! We did see one fight earlier. It was just amazing. No one in there moves faster than a snail, no matter what is going on but I bet they run to their cars at the end of the day! Just completely unreal! oh and the 4 other people working just watched and did NOTHING!!!!!! AAHHH a great state office at work. So glad my taxes go to pay their well deserved salary!
I am sooo glad Jed opted to go to Nana's.
He is VERY tired and run down. This chemo is kicking his butt. We are just trying to avoid any fevers. He goes for blood tests on Thursday. Cross your fingers for him, we have to get to THON!!!! At least Savannah is driving!!! Gotta go, Love Jed and Kristin

Thank goodness, today is over and it all went smoothly. We have been planning a baby shower for my brother and his wife for months! I couldn't write about it because, duh, it would have blown the suprise. Savannah and I handmade all the invitations and made the gift bags but everything else my poor mother ended up taking care of. She really got the major load & of course did a great job. The guys showed up at the end to haul the loot home. Danny had to run back and forth all day for the things I kept forgetting! Then he had to come get Jed when he had had enough of all the "girl" stuff! ( he didn't want to miss the Daytona 500) Jed helped decorate and was the look out for the guest of honor! He did a great job! He said "I'm 99% sure they are here"! So all went well and I think everyone had a good time. I can't wait for them to have this baby (Jed and I have decided she is ours!) He really loves babies and little kids. He will be the best babysitter. I posted some pics of the day after this post. The food was great and the cake was awesome!!!
Jed is feeling VERY good! I can't believe how he bounces back..unreal. He looks great too!
THON is almost here!!!!!!!!!!!!!!
Love Jed and Kristin

I guess google will never fix the spell check button!

Tiersa!

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This is Jed's Aunt Tiersa, she is giving Jed his new cousin Olivia in April!

The seat of honor!

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Jed

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Jed was the "look out" so we could suprise his Aunt Tiersa!

Mommo, Savannah and Me!

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Jed and Uncle Adam

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Jed and Mommy

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Some pics from the baby shower today! Jed can't wait to meet his cousin!

Jed and Holly

Jed and Holly
Originally uploaded by buckley04@verizon.net

This is from this summer, Danny got a limo to take Jed for chemo! This is Holly, Jed's main squeeze, she is the one he asks for when he is upset and no one else is allowed to touch his port! Holly is the be all and end all for Jed at Hershey!!!!!!! He will even leave the floor and go to clinic to have her change the needle in his port! No IV team for Jed!

HEY! Guess where we are? HOME!!!! Yea. As of this morning at about 11, I really thought we were staying another day. He was crying, he didn't feel well and he was worried he would get home and feel horrible. He was a mess. Then it's like a switch is flipped in his head and he gets up and dressed and is ready to go. We left the hospital about 4:30, we dropped Danny at home and went to Grace's for the last part of her mom's wake. Jed wanted to go along, he was a big hit! Everyone was so glad to see him! We went to Nana and Pappaw's after that and to Mommo and Hop's. Mommo made him her famous chicken casserole with low fat stuff, he was in heaven! So as of now all is good. I have to start giving him a shot every night to bring his blood counts up. It lasts from 7 to 10 days. Thank goodness this med doesn't burn like the other.
So now we can chill at home and get ready for THON!!!!!! Yea, he has heard from so many people saying they can't wait to see him and we can't wait to see all of them.
I forgot to say Happy Valentine's Day to everyone yesterday...so there it is! Danny came up last night and brought us balloons, cards and Jed a stuffed bear puppet thing.
Tomorrow morning is Savannah's driver's test! Whoo Hooo! Then she is going with my mom to Baltimore for the 3D ultrasound thing Tiersa is having, I was going to go but I REALLY need to come home and sleep for awhile! Sometimes I have no problem being up there but this time I wanted to leave sooo badly and I just could not sleep.
Thanks to all of our awesome nurses and aides, they always take such great care of us. We love them. I think that's it for now. Love to you, Jed and Kristin

P.S. Dad, Jed says if you dress like a cheerleader for THON you will clear out the BJC so it's probably not a great idea. oh man would you make an ugly cheerleader!

Ok, so maybe tomorrow. The chemo really hit him hard the last few hours. We left it up to him and he said he was not ready to leave. He has had 4 different kinds of nausea drugs and it is just barely keeping it contained. The hope is a night of good sleep and he will be able to take his meds orally tomorrow. He and Danny are napping together right now! They are great nap buddies.
He came in here so pink and pretty and now he looks like crap. I am always amazed at how he bounces back after all these toxic chemicals are dumped into him. I hope he does as well this time. THON is looming and WE WILL BE THERE!
Savannah is so excited, she is sooo into all the planning for the weekend. I say just get some stuff and get in the car! She is also all excited because Danny is buying her prom gown, so of course that is a project, thank goodness she found what she wants online so all we have to do is have it altered....no shopping!!!!! yea. Her mini THON is in the works too, very busy girl. The mail is full of college info, I think every college within 3oo miles has sent her info! I guess I have until later next summer and then we have to start the "college campus tours". Oh my.
Gotta go check on my boys!
Hi to all, thanks for the comments!
Love Jed and Kristin

Hey, we could possibly be out of here tonight! Don't hold your breath though we know how these things go! He is getting his last dose of chemo right now and is having a little school time too. He had a fever again early this morning, tylenol took it away but we are waiting to see what the cultures grow...nothing would be nice! He is getting pukey but that goes with the program.
Our whole focus is THON! We just want to be ready next Friday to leave at 1pm!!!!! That is the goal.
So I will let you all know what's up. Our old friend Dan, from KA at Penn State, called last night, we were so glad to hear from him and can't wait to see them at THON.
Our organization, Gamma Phi and Acacia have been kicking butt with fundraising, can't wait to hear the totals! Go, Katie!
Savannah sings next Sunday around 10am for the family show, last year we had to watch over the computer, this year we will be right there!
Ok, gotta go rescue Jed from Moby Dick..the teacher is reading because Jed is too full of phenergan and morphine to read!
Hi to all, Lauren (night nurse) hope you can get on this site! Jill (day nurse) we will miss you. I think you will be doing your new job as mommy before we come back...good luck!!!
Love Jed and Kristin

Hi. Jed is sleeping as much as he can. The chemo makes him feel pretty crappy. So not too much happening here.
I did learn that a child who got sick at the same time as Jackson is back again and not doing very well. I don't know them, only by sight but she is in PICU and does not have much time left. So sad and completely pointless. We are thinking of you Isobel and your family.
Also our friend Denise that keeps our room germ free up here, lost her Aunt today. So sorry Denise.
Ok people that is enough dying for now we all need a break.
Hi to everyone. We love to read your comments so keep leaving them!
Gotta go, Love Jed and Kristin (spell check button still does not work )

Thinking of you always Jackson, Trish and Pete

Hey. we are here. Our "Hotel" Hershey! He is in a great mood. I was worried because he kept talking about how Jackson, Trish and Pete are not going to be here but he seems to be fine even a little nutty, I think that is too much sugar. Anyway, all looks good, his chemo started at 9:30 pm and should be finished before morning (I think). The weather is yucky, have I mentioned before that I am not fond of cold and wet crappy weather? I'm sure I have a million times! Jed likes to look at it but thank goodness, is not really into playing in it. Maybe when he feels better, who knows. There is not much to report, all is calm. We are back to our regular wing, with new "flat screen" Tvs. I don't know what Jed was expecting but he was shocked at the size! I think he figured 42 inchers or something, they are nice, just small! So that's it. Room 7250, that's us!!! 717-531-4850
Love to you Jed and Kristin
Kisses to you Jackson

Hello. We are off to Hershey today. I hope we are not there any longer than 3 days or so. Jed looks great and is feeling pretty good so the plan is for this to be an in and out visit.
We woke up to snow...yuck, I am not a fan! Cold, wet, yada, yada, yada.
Nothing else new, I have to go pack.yipee!
Love to all, Jed and Kristin

Hey all,
We said good bye to Jackson today. So beautiful and so very sad. Jed decided not to go, he went to Grace and Jim's. He made sure to tell me to tell Trish and Pete he was sorry about Jackson and he will miss him. When I told him he cried, but in true Jed fashion he starting talking about what Chuckie Cheese in heaven looks like! We decided it didn't have any germs and you didn't need any tokens! Lots of nurses were there & Dr. Comito. They are all so wonderful, I don't know how they do what they do. We are lucky to have them.
I can't say enough about this family. We love them. All of them, they are all just so nice and always caring about others even though they are going through hell. We are so lucky to have met them.
Ok, Jed looks great, Dan, Jed and I went out last night to shop for them both. Jed got a bunch of pants because all his are to big. Dan got a suit! Yes a real grown up one...looks good!
Jed decided when we got home, after 8pm, that he wanted meatloaf.....sooo I thawed the meat (turkey) and made meatloaf...of course! I really am not fond of cooking...at all. But hey, I guess it goes with the job!
Tomorrow I am going to see my Gram in the hospital. She is doing a little better. She told me, a few weeks ago, that she is not going anywhere until she sees Adam's baby (end of April). She is so stubborn I believe her.
While Grace and Jim were babysitting my kid Grace's mom died. Jed stayed with Jim while Grace went and did what need to be done. She has had most of the plans in place for a long time. Your never ready for the loss but in this case it was time. Take a deep breath Grace!
I guess my black dress is going to get a work-out. Yes, I know I always make sure it is all about me!
So on that note I think that's all the news from here.
Just a sad, sad day...but we are so VERY lucky, and that's all it is is luck, to come home to our funny, weird, sweet kids.
Love Jed and Kristin

We lost Jackson yesterday. I haven't told Jed yet. People say "there is a reason for everything and to look for the positive", well for what crappy reason did this happen? and there is NO positive in this. This was a 3yr old that was sweet and funny and smart and sooooo loved who had to suffer and then go, nope not 1 good thing in that.
Oh Jackson, we are happy that you are no longer suffering but we will miss you so much.
May you never run out of silly string.
Love Jed and Kristin

I put a copy of the post from Jackson's carepage in here.

February 07, 2008
Jackson found peace yesterday. He was surrounded with love by his family. He woke breifly to make sure he had some silly string to take to Chuck E. Cheese. When ever you hear thunder and see lighting it is Jackson shooting silly string in heaven. Love you Smoosy, Mom and Dad.

Services for Jackson will be held Saturday February 10th at St Paul The Apostle Church in Annville. Visitation begins at 9 am and will be followed by Mass at 10. A luncheon will be held following the graveside service. Directions to the church can be found on the church's website: http://www.saintpaulsinannville.org/. In lieu of flowers memorial contributions can be made to the Hershey Medical Center Music Therapy Fund. Checks should be made payable to Penn State University and mailed to Penn State Hershey Office of University Development,A120, 600 Centerview Drive, Hershey, Pa 17033. Please include a note indicating the gift is in memory of Jackson.

Howdy.
Today was spinal tap day. Jed did wonderfully..as always. His "personal nurse" Holly got him all ready and walked us up to the OR. Carol, the nurse in the OR got him all settled, she even showed him the sea shells she picked up in Mexico before they knocked him out. Dr. Powell did his spinal and all was well!
We went up to the 7th floor after Jed woke up. Man he loves to hold on to that anaesthetic! I wait for awhile but after more than 1/2 an hour I have to start opening his eyes, shaking the bed, tickling his nose, anything to wake him up! So after sleeping beauty woke from his nap we went up to see Jackson.
He is still fighting. He was drinking his milk and watching Scooby-doo and twirling his mommy's hair. His Nona was there too. I can't imagine how exhausted they are and how sad. Oh my, I can't even really start to think about the depth of what they are loosing. It is not something I can wrap my mind around. Little kids should not suffer...for any reason.
Ya know, my Grandma is in the hospital and so is my best friend's mom, they are in their 80s. I love my Gram and will miss her sooo much. I lived with her when I was small and spent my summer vacations with her for many years but she is over 80 and I think she is ready to go. The same is true with my friend's mom. But dammit, Jackson is 3...3 years old, that is just so wrong.
Sorry, just venting.
Anyway back to the good stuff, today was moving day on the 7th floor. Our wing got some much needed minor updates including flat screen TVs!!! And the best part...the remotes will have numbers so you don't have to go all the way around the channels if you miss what you want! I am hoping for a better light over my bench and maybe the air vent won't be right above my head! I always freeze while Jed is sweaty! Jed was hoping for Tempra pedic matteresses....I don't think he is getting that...but we will be happy with any improvement!
Jed looks great, he is feeling good, his counts are good. He is getting stronger everyday. So hey what else could I ask for right?!
We go in next Tuesday for a few days of chemo, I hope we are out before Sat. Savannah is taking her driver's test that morning!!!! Yea, just in time for musical season! Holy moly, Savannah is going to drive a car, good god, how did she get so old? When did that happen?!
Oh my, see ya later. Love Jed and Kristin (again, the spell check button is not working!)

The picture is jackson and his Mommy Trish

Hi guys. Our weekend was great. We got home Thursday evening and some friends from Gamma Phi and Acacia came to visit Friday night. It was a little crowded for them but we had a great time.
The update I have about Jackson is that he had a party on Thursday night with Scooby-doo, his cousins and friends. We are hoping to see him tomorrow. Jed has a spinal tap at 8am and when he wakes up we hope to stop by the 7th floor to see everyone. Jackson is a fighter, such a strong little guy. On Thursday morning before we left we played bingo. Jackson was moving his Hershey kisses around to make bingo. His wonderful family was there to help cheer him on. We love you Jackson.
Yesterday we had breakfast with Uncle Adam and Tiersa & Mommo and Hop. Then Jed spent the day at mommo's and Danny, Hop and I rode motorcycles...Yea! ( Savannah was with her Andy!)
Jed didn't want to ride, just a tad too cold for him! It wasn't too bad, a little cold on my fingers but not bad at all! I was afraid maybe I had forgotten how to balance but nope I did good!...yea. I sooooo love my bike, it's nice and loud too....ooohhh really love that!
Anyway, all is ok here. Jed is actually still sleeping. I know I should wake him but I just don't have the heart!
I guess that's all for now. THON is quickly approaching.....check it out THON.org.

Can't wait, we are so excited and hope we don't miss it again. Thanks to all our Penn State friends for all the goodies and coming to visit! Ok, gotta run.
Lov Jed and Kristin

Nurse Jill and Jed

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Nurse Jill, notice the belly? The next time we see her she will have a little boy of her own! Good Luck!

LV, Jed and Katie

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Originally uploaded by buckley04@verizon.net

Jed with his women! Some friends from Gamma Phi and Acacia came to visit this weekend. We all had a great time.