Hey! Well as of today we are officially in "maintenance"! He had a spinal tap and his inhaled antibiotic today. Tonight he started his 5 days of steroids. Cross your fingers for an event free 5 days. It could go either way with this stuff! The good part is that he only has to take it 5 days every 10 weeks. So we shall see! We do not have to go to clinic next week, slight panic attack for me but Jed is thrilled!
Right now he is feeling kinda pukey from the methotrexate they put in his spinal fluid. Sometimes it effects him and sometimes it doesn't. We did have to make a stop at the Game store so he could spend the gift cards burning a hole in his pocket!
When we got to clinic they had a poster up saying Happy Birthday Jed and everyone came out to the hallway and sang Happy Birthday! Even Dr. Unger. It was so sweet. I almost got teary eyed...but I don't do that, anyway it was really very nice. They also gave him a Wal-Mart gift card. So very nice. Carol, his nurse in the OR, gave him these little sea shells she got in Mexico called angles wings!
So that's it for now, thanks again to eveyone that helped make his birthday so wonderful.
Love Jed and Kristin

Hi All. Jed had a very relaxing Birthday! He slept until almost 2pm! He asked for chicken cooked in garlic with tomato sauce over spaghetti for dinner...so of course that's what he got. He also asked for Boston Cream pie cake...so we bought that! Mommo and Hop came over to sing and blow out candles. He also got many many phone calls and comments on here. Now everyone is relaxing again! He had a great birthday...thanks to everyone for all their well wishes, cards and gifts. Now he is officially 11!!!!! I will put up the link for the rest of the birthday pics. There aren't that many just some of dinner and the cake!
Thanks again everyone!!!
Love Jed and Kristin

WOW The parade was sooo cool! Jed had a blast...we all did! So much fun! Everyone was extra nice and very caring. I am looking for any pics and video of Jed in the parade....anyone who has some send them to me please!!!!! I don't have any of him actually in the parade. The weather even behaved for those few hours! I can't thank everyone enough...Jon & the whole gang from the Harley owners group, Kelley Gibson working for the city of York and everyone that made all this happen. Thank you so much we were honored and very appreciative. We met so many more extremely nice people...we are so lucky.
Today was a wash out... but.. oh well last night was great! Tomorrow is dinner at Chili's (Jed's favorite place). Ok, I will have more details and pics soon. Remember any pics or videos of the parade send them my way!!!!
Thanks so much to everyone!
Love Jed and Kristin
Go PSU :)

I forgot, some people have asked me where we are getting our "Jed's Special Forces" T-shirts and pins. If you click on the link to the right that says Zazzle gallery it will take you to the place where we get all this stuff. There are a couple of pages of things already designed but you can click on any shirt and customize it yourself, change the type of T-shirt, font, color etc...
Ok that's it!
Love J&K

A Birthday gift

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Originally uploaded by buckley04@verizon.net

This is Jed's reaction to the birthday gift he received from his Gamma Phi girls and Acacia guys. The PSU students sent him a game for his Wii and a gift card to the game store! Really guys, that was very very nice! He was thrilled..as you can see! The cards were cool too. So many signatures, I read them all. Brent your card was a huge hit!!!!! Thanks again so much.
Jed Dad and I rode up to Harley today to see Danny at lunch. We saw Ralph and Scott and some others. Jed ate about 3 bites of a funnel cake and got a hat. He was finished after that. He didn't feel well. We left there and stopped at a place to look for a rain jacket for Jed to ride in. We didn't find anything. When it was time to leave Jed said he felt like he was going to pass out. We called mom and she came to pick him up. if he says he feels like he is going to pass out I definitely do not want him on the back of a bike! So we all came home and he had some meds. Right now he is having school and seems a little better. Someone from the local ABC news just called and wants to do an interview tomorrow with him! I might have to get him an agent!!! He is also on the front page of the evening paper today!! Jed the celeb!
So that's all for tonight. I will try to put a link to the article in the paper up later.
Tomorrow is the big Day!!! NO RAIN after 4pm please!
Love Jed and Kristin

Howdy All !!!!! Just a quick update. We did an interview this morning..the link is on the right with the parade promo link. It turned out pretty good. Of course before the camera went on Jed was very talkative. After it was on it was like pulling teeth to get him to finish a sentence!
Now all we have to do is have NO RAIN!!!!! It can rain before and after but not during the parade!
Jed is ok. He was kinda pukey today, I think from the chemo yesterday. He should feel better tomorrow. He is getting excited about the parade and his birthday. He has had a list for more than a month & every time someone asks what's on his list I give them 1 thing and check it off so I don't tell anyone else the same thing. He keeps taking the list and rewriting it! I told him tonight no more rewrites!! weird little kid!
That's it for now. Danny is making fun of me because I am using my "once every few years right to whine". I don't feel so great, lovely cold. Sometimes whining makes it better. Cookies would make it a lot better. Oh well I guess this is a good way to be reminded of how horrible Jed feels..everyday.
Check out the interview link......my bike didn't even get filmed but Dad's is famous now!
Love Jed and Kristin

Hey everyone. Jed had a quick chemo this morning and then we had lunch with Hop, Grace & Savannah. Nap time now. He is still fighting off this yucky cold & being as gracious as he is he decided to share it with me....whoo-hoo!
So the build up to the York Bike Night Parade is starting! Tomorrow we are doing a video interview for the paper that will be posted on the web. When I have a link to it I will stick it on here...if it's not too embarrassing! Thursday Dad, Jed and I are riding to the plant to check out the vendors and see Mommo and Danny. Friday evening is the parade! Saturday night Jed is going to Baltimore for a baseball game. A very nice man, that we met at the hospital, sent Jed tickets! He is taking his little brother and his Dad. Sunday Jed wants us all to go to Chili's for his birthday dinner and Monday is his actual birthday! Busy Busy. Thank goodness there is plenty of time for naps in between everything! Everyone please chant with me: "it will NOT rain during the parade Friday evening" Thanks! So that's all that's happening right now. I am posting a link on the right that goes to a promo thing about the parade and Jed...check it out!!!
Ok, gotta go. Love Jed and Kristin

Food after the walk

Food after the walk
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

Here is our walking crew, Dan, Savannah, Jed, Jared, Liz, Christie and Brent. The walk today was great and it was so nice of Christie, Brent & Liz to come from State College to walk with us. Jed walked the first lap..2 miles! He talked Brent's ear off the whole way! Jed wanted to walk the last 2 miles but the college kids said they needed to sit down and wanted him to sit with them! Thank goodness because Jed would have been hurting tonight. Danny and I walked the whole thing. It was a fun day and we got to see lots of people, some we haven't seen for awhile. We also got to see people we love from the hospital away from that setting.
Yesterday we went to Chevy Chase MD for my grandmother's 85th birthday. It was wonderful to see my aunt and uncle and cousins and their kids. It was so fun with all the kiddies running around. Gram and Jack looked great,. just a really nice day.
Our whole weekend was good.
Jed is coughing and hacking and has a sore throat but so far the Tylenol cold medicine is making it tolerable and he has not had a fever. Let's keep it that way!
This coming Friday night is the Bike Night parade. It starts downtown in York at 6pm. If you are around come watch Jed be the grand marshal. We line up at the fairgrounds at 5pm and lead the parade through York. It should be very fun!
Ok, I guess that's it. We did have a great weekend.
Love Jed and Kristin
I will put up picture links from today and yesterday if anyone wants to see them.

Hey ya'll! we are home! Amazing isn't it? He said his stomach pain is gone??!! weird. Maybe all the antibiotics he was on helped. Who knows. I am just glad to be home. Denise, every one's favorite housekeeper, was glad to see us! We did get to see some of our nurses again but we weren't gone long enough for them to miss us!!! Jed got to give out his "Jed's Special Forces" pins to the nurses and staff.
Of course I had to have an eventful ending to the last few days of fun. I got a speeding ticket on the way home. I didn't say a word except "here's my stuff, ok ok". I figured I was due
for it after all these trips up and back and I couldn't argue with him, I was speeding...I always speed. Bad habit but slow drivers send me over the edge. So I got my punishment in the form of 156 dollar ticket and who knows how many points. I was upset at first and then I looked at Jed and just shrugged my shoulders. He said "oh well", I said "yup, oh well". And that was that. Whatever. Like I said I can't argue I was going 20 mph over the limit. I am just thankful it wasn't one of the times I tried to see how fast I could get to 100 on the new turnpike bridge. I love that bridge, I guess I won't do that anymore. Oh well.
So that is the end of what was supposed to be an all day chemo....on Tuesday!
Oh yea, forgot to mention that Jed now has a runny nose and a sore throat...wow, he couldn't have picked that up after 7 hrs in the ER could he????? If I start to think about that I will get agitated.
We are home...yea and Jed's belly pain seems to be gone..yea. We do have a new med now for him to try if this flares up again. They think it is spasms in his intestines...what a yucky word. intestines. yuck
Hi Trish babe! thanks for the phone call, I so love to hear from you! and as we say, it is all about me!
I am going to shower...WHOO HOOO. I am so easy.
Jed is eating frozen pizza and homemade french fries, if his belly starts to hurt I am giving him Tums.
Love Jed and Kristin

Hey, well we had quite an eventful day yesterday & night too. After being at clinic from 9am to 5:30pm we went to get a CT scan on Jed's belly just to rule out anything major as the source of his pain. Jed's belly pain has been increasing over the last few days and his oral morphine doesn't take the edge off. After his scan he had the tech call DR. Unger and tell him that he felt too bad to go home. Dr. Unger said if Jed felt he needed to be admitted that he had to go through the ER because clinic was closed. Needless to say being in the ER on a full moon night for 7 hours was an adventure. I guess Dr. Unger thought Jed might just decide to go home if he had to sit through all the ER fun. At 9pm Jed finally started to get very upset, the place was packed. The nurse at the desk just told me "I'm sorry he has to wait in line like everyone else". Ya know I don't want to butt ahead of someone that is seriously injured but come on, a 10 year old that has cancer and intense pain is not the same as a kid that wrecked his bike and needs stitches.The only good thing is that he actually has a white count of 1.6 right now!!!! A nurse came out & we got him to call Dr. Unger again, the docs answer this time was for Jed to take some oral morphine that he knows I carry. That was the whole reason we were sitting in that freak show, Jed was throwing up and couldn't keep much down, besides they weren't strong enough to help this pain. When the nurse told Jed what the doc's answer was Jed just lost it. He told the nurse "you don't understand I am in pain. If I could take medicine that would get rid of it I would have done that by now but nothing works and I throw up.I have cancer, don't you get that?" This poor nurse, I really thought he was going to cry, I was crying, Jed was crying and the 50 people in the place were dead silent & watching. We got back to a room about 45 minutes later. We finally got admitted and up to the 7th floor at 4am. We did have an awesome nurse in the ER, he was the best. Jed has been asleep since 8am. His pain is under control, the CT scan showed nothing. The Doc said that he maybe they should treat this like an ongoing irritable bowel issue. So now we are waiting to see what the GI people want to do. I did tell DR. Unger "well I guess since he sat through that freak show from 6pm to 4am in pain he really was not faking or exaggerating his pain". I got no response from that. I don't want to piss the guy off, he has been treating Jed for 6 years but I have to say I really took that crap last night personally. There was no reason for Jed to sit down there in pain begging for pain meds. I don't know what his motive was but there is not one good enough to justify us sitting there all night. Thank goodness it's over.
We saw some sights! Oh my. From the overly hairy guy in a tank top dragging around a small boy in too small pjs that was autistic and squeeked every 5 mins or so to the 3 old guys that must meet there every couple of weeks, to the family of 9 or 10 that were there to see "grandpa" to the 5 yr old little girl with a tiny scrape on her forehead that her mother kept dabbing with a tissue ( it was not bleeding) and the kid screamed at her mom that she hated her and to shut up, to the big guy with tons tattoos that used the public courtesy phone to do "business"to the big girl sitting on the floor in front of me showing me her ass all night because her jeans were too small. (sorry) anyway it was an adventure and I didn't even tell you about the guy I spent hours with in clinic that decided to bring up politics so he could "educate us ladies" as to how we should vote. He was not popular & everyone left and I had to stay there with him until 5pm! So yes this 28 year old moron did explain to me because "women have a hard time understanding finances" how the national economy works. He just can't figure out why his wife wants a divorce..geeze, I don't know either. Thanks dude but you definitely did not convert me! You could not pay me to vote republican (sorry for those I have offended). I promise to try to not talk about politics on here!So like I said interesting LONG day!
We are here until Jed feels his pain has lessened enough to go home.I have no clue when that will be, tomorrow? next week? Who knows. Danny took off half day to bring our stuff up, of course I forgot to tell him to bring my make-up bag (I thought that was a given) so I look lovely today! Like it really matters right? ok, 7260 is the batcave magic number this trip. I will keep you all posted.
Love Jed and Kristin

Hey, off to clinic this morning. Will he get chemo? we shall see!
Love J & K

So much for all my tough talk about school. Jed woke up this morning feeling crappy (literally). Of course I could not send him. He has also been stressing about not knowing what was going on when he got there. The math moves so fast that when he misses a day he can't make it up. So I talked to Mrs. Washko today. We decided he will go in the afternoons now for reading. When he is absent she will email me what he should read for the next class & that he can do without teacher help. He will do his math the 3 nights a week that she comes here. I explained all this to Jed and he was very relieved. He just gets so upset when he doesn't understand something, so this way he can work on the lessons that build on each other at home & just go to school for reading. That also helps me, because now I don't have the drama (trauma) of trying to get him up and ready in the morning! My hope is that if he is not as stressed his stomach will feel better and he will also be more inclined to go to school. So that's what's up for now.
Love Jed and Kristin

Howdy. So the wedding is over, it went well. Jed was sort of a pain in the rear but only to me..and Dan! He did what he was told and I think he liked it. He was whiney about the "itchy shirt", the tie that was "chokey" and the shoes that were "hard and stiff"!!! But only Danny and I got to hear all about that, thank goodness! I think this was the first time Jed has ever had to wear something he was not happy with!!! It was good for him! Travis got Jed a cowboy hat because his mother-in-law said "no hats at the wedding"! Jed looked very grown-up in his suit! We ended up leaving right as the band was doing their sound check. Jed was tired. The link to the pics is on the right. It was very special for them to have Jed as the best man....very nice! I also have to say the fried chicken was rockin'!!!!! Every time Jed went up to get a piece they ran out, so being the kid he is, he went right outside to where they were frying it. He hung out with the guys doing the frying so he got chicken before it even made it inside!!! That's my kid!
We also got invited to a concert in January by the woman that runs the Make-a-Wish truck convoy. It's a concert by a country singer that was a make-a-wish kid. Travis and Cindy do so much for make-a-wish, it is amazing how much time and money they devote to this cause. They are very nice people.
Ok, I gotta go. Jed IS going to school tomorrow for a couple of hours. His stomach seems better. He is doing the thing he does on the night before he has to go to school....whining! He just came down to tell me he has a fever..."but you don't need to check it mom, it's pretty low. I just wanted you to know I have a fever, but not the kind you have to call the doctor about." yeah, ok.
Wish me luck in the morning everyone!
Love, Jed and Kristin

Hi all. Wow it's Friday already. Jed is doing ok. He made it to school on Monday and Wednesday for a couple of hours each time. Thursday we ended up back in Hershey. The night before, Jed was complaining about stomach pain. He even looked kinda bloated. So after waiting around Thursday morning to see if it would get better we ended up going to clinic so they could check him out. They put him on 2 different antibiotics. He should be feeling better by Monday...he IS going to school! Tomorrow he is the best man in Travis Hake's wedding. Travis is Jed's make-a-wish truck convoy driver. It is pretty cool that he picked Jed for the best man! We went out today and got a white shirt and black shoes to go with his grey suit. He looks very grown-up! I will post the pics as soon as I can. I am kind of excited, they are having a band and a big party....I'm up for a party! Especially one that I don't have to plan, set-up & clean up for! I hope the weather is nice.
I guess that's it. Poor Danny has to work from 6-12 tomorrow but he will be home in time to go to the wedding. I think even Savannah is going...wow!
Gotta go
Love Jed and Kristin

Jed headed to school.

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Originally uploaded by buckley04@verizon.net

Here is Jed this morning on his way to the 5th grade!!!!!! Whoo-hooo!!!! He went today for almost 2 hours and did very well. Then we went to Lion's Pride and ate and then did some grocery shopping. He is tired but he did very well. Mrs. Washko came this afternoon and got him caught up on what he missed this afternoon and what he will miss tomorrow. He has an eight hour chemo tomorrow.
Hey Amanda I heard you saw Uncle Adam!!!!! Where have you been???
Thanks to everyone for for the good wishes and congrats for Jed. Hi to all our PSU friends. Hugs to Trish and Pete.

Jed

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Originally uploaded by buckley04@verizon.net

This is Jed in the lobby of Hershey Med on Saturday waiting for Danny to come get us.

Jed and Denisey-poo

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Originally uploaded by buckley04@verizon.net

This is Jed and the #1 housekeeper at Hershey Med. Without her on 7west the rooms would be very icky!

Hi ya'll. we are home~ I will spare you all the drama filled moments. It was a back and forth thing all morning. Anyway, we are out, Jed has successfully finished his LAST inpatient chemo and is at his little sister's birthday party right now! So it's all good. I am going to eat the lasagna my mother made for us and then sleep..in my own bed! Yay me. Jed looks good, he goes from screaming in pain, saying he wished he'd get hit by a truck, to running down the hallway to leave in about 10 minutes! Nutty kid. He makes me tired! He has done an awesome job the last 21 months. He had some really hard core chemo and some not so lovely extra things thrown in (gall bladder, pancreatitus, blood clot, an infiltrate at his port, these are just a few!) Fingers crossed everyone...we don't want to ever do this again...ever! We will miss everyone up there but we will stop by and visit. The one and only good thing that has come out of all of this is the really wonderful people we got to meet. We were very lucky. Come on maintenence,...... lets get it over with!
ok, enough. Lasagna calls.
Love Jed and Kristin

Below is a copy of an email I received from the Four Diamonds. I wanted to put it up so everyone can read it. if anyone is interested Danny and I will be there and I am not sure yet what to do with Jed because he cannot walk 4 miles but I'm sure someone will be there to hang out with him, we will be there if anyone wants to join us!!!!
As for right now we are still here at Hershey. He is sleeping. The pain seems worse today but we have him pretty comfortable right now. As soon as this stuff gets out of his system he will feel better. Gotta go, I can't even get out of doing laundry when we are in here! Danny took off today to hang out with us. He was here all day on Wednesday too. It makes the days go a little faster...sometimes!
Love Jed and Kristin

Good morning!

Just a reminder that the 2nd Annual 4 Miles for Four Diamonds Walk is on Sunday, September 21, 2008 beginning at 1:00 p.m. at the Academic Support Building here on the campus of Penn State Hershey Medical Center. If you have not already registered, it's not too late! Register today online at www.FourDiamonds.org and make the early bird registration deadline of Sept. 7th!

If you cannot attend the walk, you can still support the event as a "virtual" walker, and again, register online. We have several virtual walkers from California and North Carolina so let's see how many more we can add to our list.

Last year we raised $10,800 so we need your help again in order to make this event a success. September is Childhood Cancer Awareness Month so this is a great way to help support The Four Diamonds Fund and its mission of conquering childhood cancer.

Please feel free to forward this email to your family, friends and co-wokers, and ask them to forward the email as well!

Thanks!
The Four Diamonds Staff




Linda BarryFour Diamonds Assistant DirectorThe Four Diamonds FundOffice of University Development, A120P.O. Box 852Hershey, PA 17033-0852Phone: 717-531-1317

Hi we are here at Hershey Med center, room 7266. This is Jed's LAST inpatient chemo!!!! I think I said that before but now it is really happening!!!!!! There was a sign on his door and streamers when we got here yesterday! It is so weird to see that sign and know it's on our room!!!! Jed was very happy, he said " mom, we got streamers!" So the plan is to get through this quickly and quietly and go home!! The only time we will be up here after that is for fevers. We know that will happen but that's ok. At least with fevers you come in feeling bad and leave feeling good. With chemo you come in feeling pretty good and leave feeling horrible! No more of that!! We will miss everyone up here but not enough to come stay! We will just visit. Jed has had a long hard 21 months but he has done it all and is on the road to maintenance. Maintenance is not a picnic but it's not anything like he has been doing. We still will be going to clinic every Tuesday and taking lots of pills. That's ok, it can be done! When I looked at the protocol when he first relapsed I remember thinking how will he be able to do this? But he did it!
Ok, that's all for now. We are here and with any luck we will be out by Sunday. Maybe Saturday! Hi to all our PSU friends. Everyone is back in Happy Valley and working hard! Hope to see you all soon.
Love Jed and Kristin

Hi, Jed is doing well and feeling pretty good so of course tomorrow is supposed to be an admit for chemo. If his counts are good enough we will be in for at least 4 days. This admit is his LAST INPATIENT CHEMO!!!!!!! He still has over a year of chemo left but it all will be done at clinic and at home, it will not be a walk in the park but he should be past the really, really bad stuff! WOW. Look how far he has come! Amazing. He has done such a fantastic job getting through this. His strength is unbelievable. After this admit we will only stay in the hospital if he has a fever. Jed and I both know that is something that will happen but he accepts that (I'm trying). This is a great way to start his birthday month! I am so excited for Jed but I also don't want to get too happy, I don't want to jinx it!
I hope his counts are good so we can just get this over with.
He has had a good weekend. Saturday he spent with Nana and Pappaw. They went to the mall (the game store) and he rode his four wheeler and went for ice cream. Yesterday we had dinner at Mommo and Hop's. It was nice, everyone was there, A & Jack, Grace and Jim, Adam, Tiersa and Livi-Mac and of course all of us. I am still full!! Jed went down to see Livi again today. No one can get enough of that chunk of love! She's 4 months old and weighs 18lbs! We Buckley's don't grow no small children!
So anyway tomorrow is the 1st day of school! Savannah is a Senior....gulp. Jed will start back for an hour or so a day as soon as we get home and he recovers.
Welp I guess I better go start to get my stuff together. I thought I would unpack my "hospital" bag after this admit but I think I will just leave it packed. If it's packed maybe we won't go back!
I want to do something for all the 7 West nurses & staff but I don't know what. Any ideas? Everyone up there is amazing Docs, nurses, aides, housekeeping, child life, volunteers and even our laundry guy! ( he doesn't do mine unfortunately!) I need a good idea so help me!
Ok, really gotta go now,
Love Jed and Kristin