Hey all. Jed had his spinal tap today...after some initial confusion! His counts are VERY low...of course and when the nurses looked at his protocol it seemed to say that the spinal was count dependent ( he had to have an ANC of 750). Holly said that Jed had to stay accessed (his needle in) until he saw Dr. Unger just in case something was needed. Well Dr. Unger said that the protocol is confusing but Jed is NOT count dependent at all anymore! So we went up the the south OR and he had his spinal....hours later! Thank goodness Holly made him keep the needle in! The way his protocol works for maintenance is if his counts are too low for any drugs that effect his counts he will just skip them and NOT make them up so there are no more delays. As of right now he starts steroids in the morning but not the methotrexate or 6mp. He goes back next week just for counts and if they are 750 or above he will take the other 2 drugs, if not we skip another week of them. It is weird and I hate that he will be missing meds but Jed doesn't have a problem with it! Soooo anyway. Danny drove us so Jed and I both slept all the way home. Jed is doing well now, I have a huge headache! Oh well! Jed is waiting for Danny to get back from the store to grill his steak. I just want to go to bed.
That's what's up right now. We hope everyone has a great new year.
Love Jed and Kristin

lightsaber blue you have

lightsaber blue you have
Originally uploaded by buckley04@verizon.net

The kiddies

The kiddies
Originally uploaded by buckley04@verizon.net

Hello!Welp Christmas is over....now I have to put all the stuff away! I spent today in Jed's room, cleaning, organizing (not my forte) changing sheets...all the fun stuff. Danny and Jed spent today at the game store.... trading, returning, shopping. My poor mother spent the day in the ER in Baltimore. My grandmother's significant other is having issues due to prostate cancer and Gram spent the day in the ER with him yesterday and they sent him home. He called and needed to go back in this morning but Gram didn't feel so good. Jack would not take an ambulance so mom went down to pick up gram, then pick up Jack to go the the er. After they are there like..5 hours Gram starts to feel really bad... so they admitted her! Jack got sent up to a room and had to have some procedures done, Gram stayed in the ER getting fluids and stuff. Gram is home now, Jack is staying a little while, mom is home...yea mom! She has not had a relaxing holiday break yet! She fed us 2 meals on Christmas day and another the next day. The breakfast Christmas morning was for 14 of us! Dinner was for 8 and lunch the next day was for 7...she has been busy, not to mention all the wrapping she did for the usual mountain of gifts. I am going to either go over or send Savannah over to help her take down all her stuff and then I hope she spends the rest of her vacation reading and relaxing!
Christmas eve was nutty, it is the 1 time of the year that I cook something for others...I am not known for my culinary skills. I make chicken, shrimp and broccoli Alfredo...yummy, don't even start to count the calories and fat...i can't count that high. Our thing here is kinda like, anyone that doesn't have anything to do or doesn't want to do what they have to do can come here and hang out. This year we hit a record number....very cool...17! Those of you that know my house know that it had to be a little crazy..my house is not big.....not even kinda! I think everyone had a fun time, I did! It was nice because my kids got to have both sets if grandparents here and Jim and Grace which is like a third! Yes, that means my ex's parents came for dinner. They are wonderful and they put the kids first no matter what so we get along very well. Danny did ALL the dishes that night..what a guy! Jed did well Christmas eve, Christmas morning he woke up almost chipper and after we opened gifts from Santa we went to my parents for breakfast. We spent the day there and opened gifts, then had dinner. Jed was OK until we got home then he had a little melt down. He just cried and cried, nothing was right. When he gets like that you can't fix anything for him and nothing you say makes it better, he just has to cry it out. Poor guy. The next day we were all supposed to go back to my parents because my brother didn't open gifts there the day before, he went to his in-laws. Jed could not go, he was so wiped out. He slept all day and then about 3:30 pm he got up and I took him to the game store....all 3. The first was so crowed you couldn't get in the store. The upstairs one at the mall was so packed people were bursting out and the downstairs one had a line out into the mall. We got in the line in the upstairs store and waited...almost a half an hour. He got his PS3!!!!!!! I usually just go out and let him do his trading and buying but I stayed because the fat guy behind us kept pushing Jed with his belly! It's good I was right there, by the time Jed was ready to pay he was shaking so bad he could count his money and he was soooo pale. I thought he was going to pass out. We grabbed the PS3 and ran home. He didn't even want to hook it up...but Danny did! Jed got better after he had some Domino's...you know the life blood of Jed Smith...pizza. He watched Star wars with Savannah and her "friend" Kyle. Savannah is happy because she got her new phone. I liked it so much when it came in the mail that I thought about keeping it!
So that was our exciting holiday, now we just have to un-decorate! Thanks again to all those that sent cards and gifts to Jed, mail is something he always loves to get. When he got my parents card in the mail he came running in "read this read this" it was a nice card saying what a light he is in their lives and stuff like that. Jed was teary eyed saying aaww that is so nice! He loves his mail so thanks to all. Mrs. Kirby again, you went above and beyond...Jed is still blown away with the Thanksgiving card you sent! I think that's it now..I am going up to watch the Rolling Stones movie.....Jed is kickn' back waiting for his pudding to set up!! He got a knife set and baking stuff for Christmas and he was sooo excited. Savannah said it was just wrong for an 11 yr old to be hugging a box of knives! Savannah just ran in and back out...oh the life of a teenager!
Thanks again to everyone for helping to make our Christmas wonderful. Hope you all had a great one too.
Love Jed and Kristin (new link for christmas pics up on the right)

Hey Christie, yes you are right, he is wearing his new gamma phi-acacia sweatshirt in those pics!!! Merry Christimas!
Love J & K

Mr. Happy getting ready for chemo! He is ok until about 10 minutes before chemo, then this Jed takes over! Sullen, cranky, feelin' crappy Jed....who can blame him!

HI! Today was the last day of all day chemos in this round!!!! YEAH. Jed is doing ok. He is very tired and a little weepy. We stopped at McD's on the way home and he started crying because his honey mixed with the ketchup, then because no one gave him a napkin and then because...well he didn't really know why! Poor guy. Dad pulled over and got him a paper towel so he could fix the stuff that was touching each other! He was a little better after he got some food in him. He is lying down now. Next week he has a spinal tap and then we should have 4 weeks off, just at home meds...whoohoo. The only thing that will be a worry is his ANC. his counts dropped a lot since last week from around 1400 to 400~ so I guess that means he is on his way down. We will just have to keep an eye on him. We went up to the 7th floor and gave the nurses and our favorite housekeeper a card and some peppermint bark that we made. The look on nurse Jamie's face when we got off the elevator was alarming! I didn't even think about the fact that the nurses might be scared we were coming to stay! I told Jamie "don't worry, it's just a visit"!!!!! So that's about it for today. I guess I am headed to the grocery store to get stuff for tomorrow's dinner. Not a fan of the grocery store, nope not at all. Oh well!

Thanks to all of you that sent cards and gifts to Jed, he loves mail and of course gifts don't suck either! Pennridge High School...thanks for the cool stuff, he loved it! Acacia and Gamma Phi..the sweatshirts are rockin'. Within 10 minutes of opening the box all 4 of us had them on! Thanks so much!
Ok Merry Christmas and stuff to everyone, enjoy the holiday...Love to all of you from all of us....oh yeah, I AM sending out cards but as usual I am late. I am just trying to extend your holiday cheer...really. You will get them....later!
Love Jed and Kristin

Hey. Today the kids had Christmas at Nana and Pappaw's..(the Smith's). Aunt Mindy, Uncle Barry and Dakota came down to celebrate with them. I just have to say, thank god for Aunt Mindy! I was so stressed out this morning. Here's why: When we left clinic on Tuesday I forgot to get Jed's prescriptions. Great, yea me. I realized it Tuesday night and emailed Denise, our nurse. She told me Wednesday that she asked the pharmacy to mail it out registered mail. Jed took his last morphine this morning before heading to Nana's. I waited all morning for the mail man so I could sign for Jed's morphine....the mail man did not have it....aaaaaahhhhh, oh no, huge panic. I called the after hours number and that requires calls back and forth that can take over an hour. I finally talked to the Dr. on call and he called my pharmacy here in town to give Jed a small emergency supply.....they have done this before but this time they said no because it was narcotics and they had to have the actual prescription mailed to them and in their hands in less than 48hrs...well it's Saturday so that ain't happenin'. So my 5 minutes of relief was shattered when the Dr. called back to tell me this. He said the only alternative was driving to Hershey and picking up an emergency supply and the original prescription should arrive on Monday. It was 12:50pm, the pharmacy at Hershey closes at 2pm....it is an hour away from us...without traffic..........oh god. Danny said he would run up there, if I get another ticket I could lose my license. I was a little stressed out, I felt bad that I had him make that run and that he was going to have to hurry and could get a ticket and still not make it. Then I get a phone call from Savannah, Jed says he is too sick to make it home and I need to bring him some meds ..NOW, well, I have no car....Danny is driving it and besides Jed can get home quicker than I could get stuff together and get down there anyway even if I had a car! Jed is sobbing and he and Savannah are headed home. Now I am stressed thinking about Jed freaking out in the car with Savannah driving, I know there had to be lots of yelling. They made it home in one piece and I gave Jed some other meds for his belly..and he goes up to lie down. Savannah hands me a bag with gifts for me...from my ex-in laws..love them! Starbucks gift card.... whooohooo! and from Mindy and Barry and Dakota....a huge bottle of Pina Colada mix...it already has the rum in it...brilliant, beautiful! I got some ice and dumped some in the blender, poured it into a huge glass and presto...no more stress! Actually Danny called while I was blending and said he got the meds, the original prescription, they never did mail it..and he was on his way home. I drank my HUGE glass of pina colada and now.....I feel nice and calm, a beautiful thing! So that's my story for the day. Jed is still kinda miserable, belly hurts, poopy and cranky. Poor guy. at least he is home in his bed now. I'm sorry he can't have a big glass of pina colada too. Danny will be here soon and Jed can have some pain meds. It must be hard being sick and having a mother that forgets to get you needed meds....nice. Thanks Mindy for my Pina colada dinner, yummy! Maybe one day I will have it all together enough to not forget VERY imortant things....I hope, poor Jed.
Love Jed and Kristin

Hey all. I need some addresses..Christie..K-rob, LV, Liz, Brent, Dan Alexander and one that will go to all of Gamma Phi. Please email them to me...thank you!
Jed is doing ok. He is sleeping a lot..nothing new there! He did want to go to lunch today and he ate pretty well, so that's good. He has 1 more all day chemo left in this round yea!!!! He is happy because we sent our wii fit board to nintendo to be fixed and they sent us a new one!!!! It was a big deal!
gotta go,
love Jed and Kristin

Hi all. Happy Birthday, yesterday, to David, Danny's son. Hope you had a good one.
Jed walked to the local coffee shop with Grace today to get hot chocolate and he had school this evening. He is feeling pretty good.....until he remembers tomorrow is chemo! he is telling me every 5 minutes that he can't wait for Christmas morning...he's not talking about gifts, he's talking about breakfast at Mommo and Hop's! We have always had breakfast at the Buckley's on Christmas morning and we always have buckwheats. Jed is dreaming of them now! Don't get me wrong he is excited about gifts but he is ready for the food!
Savannah got her letter from American U. today...they said no. I know she was disappointed, I am too, for her. She can always transfer there after a year or two elsewhere. She is postive that Penn State will say no also. Towson is looking like where she will be, at least for the 1st year. Um, $46,000.00 a year compared to $22,000.00 a year...Towson is lookin' real good to me! Cross your fingers for financial aid.
I guess that's about all. It was over 50 degrees today but we are supposed to have a winter storm tomorrow....yipee, glad hop is driving!
hey have any of you felt like throwing a shoe at Bush??? I can't say I blame that guy! Ok, gotta go finish decorating. I do it in spurts! Almost finished.
Good luck on finals to all our PSU friends.
Love Jed and Kristin

Hey all. So not much new here. Jed is doing ok. Sleeping a lot. He is also kind of manic right now. He goes through these things. All of a sudden he just starts talking and won't stop. Then he fixates on something and goes on and on. Yesterday I was gone all day Christmas shopping and Danny said Jed was weird all day! I went to Mom and Dad's to wrap gifts before I went home. Adam, Tiersa and Livi-Mac showed up. We ordered pizza and Adam went to pick up Jed. He just was so happy to see Livi,, he has to hug and kiss her constantly. Then he started this thing where he is itchy, then it just gets worse and he won't stop itching. He gets so worked up and upset, it's just weird. We left and got him some benadryl. Then he clogged the toilet at home and Savannah and I plunged for an hour! So much fun I just can't tell you. Jed of course is in the hallway the whole time telling us why we are doing the plunging wrong and also singing toilet songs to us. Then later he kept saying he didn't do it and he doesn't understand why no one ever believes him...ok. sometimes I truly think both of my kids have mental disorders...mild ones maybe but still a few issues! Oh the drama and over the top emotion... I don't know where they get the weirdness.....:)
So anyway, Jed finally fell asleep and Danny fixed the toilet and Savannah got up and went to work this morning so all is calm......for now. I am almost finished shopping, a couple of small things to do and then that's it. The kids will have a good Christmas this year, thanks to some help from my parents. This not getting paid stuff can be a tad stressful but oh well what can I do? Next year will be better, I will be working and Jed will be FINISHED with chemo!!!!!!!!!!!!!!!! I would love to leave the day after Christmas and go to a nice warm place for a week, I wonder if I could talk the kids into forgoing gifts for a warm vacation? I will enjoy Christmas this year, I always do but I want next Christmas to get here quick, things will be much different by then.
A special hello and lots of love to the Hildebrand clan and the newest member, Ella Grey Morgan. We are thinking of you guys and sending our love. Ella was born with some heart issues but she is home and will be getting treatment at Hershey and will grow up big and strong and wonderful like all the other women in her family!!!!
Ok, gotta go, Grace just called and I have to go walk....it's cold but i guess it's good for me...yipee. Love Jed and Kristin

Hey, Hi. I know it's been a whole week....sorry. Jed felt yucky all last week after chemo. It really hit him on Thursday. He was poopy and pukey for a couple of days. I think along with the chemo yuckies he also had a mild virus. Danny was sick for over a week and I think Jed had some of whatever Dan had. Jed felt pretty good on Sunday. Grace and Jim took him to pick out our Christmas tree and some garland. They took him out to eat and then came here and helped put up the tree. I love that they do this! Jed was VERY tired Sunday night! On Monday he was cranky, clingy and emotional. he just didn't feel well. Yesterday he had a hard time. He felt yucky and he was stressed because he knew he was going to feel worse. he is getting cytoxin every week, that's the drug that takes all day. Actually, the drug only takes an hour or so but the pre-hydration and post hydration take hours. The other drug he is getting every week right now is vincristine. This drug makes him hurt. He sometimes can't even stand to be touched. Needless to say this adds to his stress about pain. Thank goodness he gets phenergan and ativan as pre-meds for this infusion...he sleeps. Only gets up to pee. This time though he came home is scrubs because he was a little stoned and couldn't quite get his pants down in time...poor guy. Just adds to the fun! I love the kiddie scrubs, they have little tigers on them...Jed does not love them...at all! So Yesterday was not great, it could have been much worse but it still wasn't great. He did eat on the way home, I was shocked! We stopped at McD's because dad and I were starving. Jed wanted a hot dog but decided a milk shake and a fruit and walnut was needed to hold him over until he could get the hot dog....which had to come from Five Guys! While we were at clinic the Christmas elves ( Grace and Jim) put up my garland on our porch!!!! YEa!!! it looks great! I can't tell you how wonderful to was to come home and have it done!! So anyway, he did eat pretty well but he hurt so bad he came home and took a nap from 5-8 in my bed because it's softer. I woke him at 8 for the last Biggest Loser!!!! He then went to sleep in his room & came back to ours about 1am. I went to his because he is just too big now to fit 3 in our bed! He slept until almost 3:30 pm today! He woke up much better than I anticipated. We ran to the store and to the Pride to eat..he was hungry and there was nothing in the house that he wanted...of course. He helped me finish the tree. Now he is eating ramon noodles and resting in bed. He seems to be better but he got tired very quickly. Maybe most of the really bad stuff last week was because of a virus and this week will be better.
Savannah, Jed and I made dough ornaments to take up to the hospital next week for kids to paint. It was an adventure! We made some for ourselves too and have been painting and decorating our dough for days!!! Not too bad I have to say. We are definitely not pros though! I guess that's all the news, not very exciting! Our house looks like a bomb went off, all the Christmas stuff is up here and all the dough decorating stuff is spread around plus all the regular messy stuff. Cleaning is what I need to do tomorrow...I don't want to! Oh, well. Ok, gotta go.
Love Jed and Kristin

Hi all. Today is my mom's Birthday...Happy Birthday Mommo! We went over there this evening. Dad and I bought chinese food and Adam made a kick-butt cake. Why is it that when you are eating Chinese food it tastes so good but it makes you feel weird and bloated later?? Maybe it's just me, You probrably aren't supposed to eat a quart of chicken and broccoli and a whole thing of sweet and sour shrimp by yourself. I'll have to try moderation next time..right. We put the candle that plays Happy Birthday on the cake and tried to sing along...I thought when we all sang you couldn't hear the fact that I am tone deaf. I guess you can because, as we were singing, Savannah looked at me and said "what are you doing?"...Um I thought singing but maybe it only sounds that way in my head! Mommo was tired, worked late today and going in early tomorrow. Adam is exhausted, work, school and fatherhood. But hey my group and I were just skippin' around..Savannah sat and texted while holding a conversation over dinner, Jed tried as hard as he could to get as close to Livi as possible and picked at his Happy Meal, you didn't think he would actually eat Chinese did you??!! Me, I dropped broccoli on the floor (no one saw that), was a little too firm when burping Livi-mac and used a knife to cut the cake that does bad stuff to Adam's expensive non-stick cake pan, oh and don't forget the bad singing. Dad tried to tell us all that mom was a few years older than she really is, walked around in his Homer Simpson slippers and wore his new Homer Simpson mask. So all in all nothing was new except mommo had a birthday. Happy Birthday. When Jed and I went to order the food he studied the menu in case there might be something he would like...he found something...Chinese donuts. He asked what they were and me, in all my brightness, didn't know if they were real donuts or like some kind of weird Chinese food thing with pork or something...i just didn't know. We asked the girl and between hand signals and some weird noises we found out that they were sugary..that's all the info Jed needed, he wanted one. They were $4 each, I thought wow they must be huge but maybe someone else will want one, so I ordered 2. So just for future reference the 1 was 1 pack of like 15 donuts. We have a lot now. Learn something new everyday! (Jed ate one)
Danny stayed home, he has a cold again and didn't want to infect to baby...and he is a baby so he wanted to be in bed. He has had more colds in the last year than he has ever had all together. I wonder why? Maybe stress I guess. I know it has to be hard to unexpectedly be the sole support for a family of 4 when before you had someone else doing half. He is doing a great job.
Grace and Jase stopped by today. That kid is funny, when Grace comes in and hugs and kisses Jed Jase yells No, No, my Nona!!!! So of course because we are all so twisted we have to do it a lot. Sad I know! I let Jed sleep in this morning. He seemed great when he went to bed but he came and got me about 12 crying that he felt horrible and it hurt to move. I gave him some morphine and stayed with him until he fell asleep...like 2am! I get up very quietly and try to slip out of the room but when I get to the door he says "I"m not asleep", this happens a few times every night! I just can't sneak very well! He was tired and kinda slow today. Hopefully it won't last long. I foolishly thought because he did so well yesterday that he was not going to have an issue with this chemo...I REALLY should know better. But I am such the eternal optimist.
I guess I am finished running on. Jed is in bed, so is Danny, Savannah is at church with Nana, I'm watching Countdown on msnbc. We have an exciting thing happening here! Oh, the king is calling gotta go do his bidding.
Love Jed and Kristin

chemo day

chemo day
Originally uploaded by buckley04@verizon.net

This is Jed getting chemo today! He has his routine down pat! Get to sleep as soon as possible and only wake up to pee. ! He did well and is not sick at all! Lets keep it up!!!! We got the quiet room today, Jed calls it the presidential suite! When his cover fell off he said "I'm cold cover the royal foot" nice
Hey Eli congrats on the clean scan dude!
Love J & K

weird guys

025
Originally uploaded by buckley04@verizon.net

Hey everyone. I hope you all ate a lot...I know we did. Jed did great. He made it all day and ate pretty good. The day was great. Gram and Jack came up and Felicia was with them, she had driven down from Yale for a quick visit. It was great to see her. Gram B was there and Bill and Beth and Tiersa's parents too. Plus all of us. 16 all together I think. The food was awesome. Savannah made cranberry salsa, Jed made corn bread muffins and I made the "green bean casserole" oooohhhh! There was so much food it was crazy. We rolled home and slept well! Grace and I went shopping yesterday but not for gifts! Danny gave me my gift early..gift cards...so I could go shop! I did too, I spent it all on me, except for a few shirts for Jed and 1 for Savannah and 1 for Dan everything thing else I bought was for me! It was fun and where we went we missed all the crowds! Old Navy wasn't all that crowded. We stayed away from the mall and got no where near wal-mart! We ended up going back there last night because I bought this awesome coat but when I got home Savannah and Karli said I needed a size smaller. Jed and I went to Mom and Dad's. Livi was there with Adam and Tiersa and dessert! I left Jed there and G and I went back to Old Navy, of course they did not have the coat in my size so I just got t-shirts and stuff....what I always wear. Today I don't think we are doing much, I am going to walk with G but then I need to do some knitting or I will have to go buy gifts Dan might be headed to Guitar Center to check out the deals I know Jed will sleep as long as possible!. Tomorrow DJ is getting baptized at his church and he invited us so Jed and I are going. I think that's about it. Not too much happening. Hi to Pete and Trish, thinking of you guys. Hi to LV and LV's Mommy, hope all is well. Christie, you have been very quiet lately, no comments?!! I will put the link up on the right for our pics. They are ok, not that exciting!
Love Jed and Kristin

Livi's Uggs

007
Originally uploaded by buckley04@verizon.net

Hey, well it was a no go for chemo again today!. His ANC is up to 280 and his white count is 1.4 but still not up where it needs to be to start this. Jed, of course, was not that sad to leave without chemo. I am kind of glad too. I was worried he would be sick for Thanksgiving and he loves Thanksgiving! So hopefully now since he has not had chemo in 3 weeks he will feel good and be able to eat. This day did not start off well anyway. I had a prescription for his EMLA cream that he uses on his port to numb it. I dropped it off a week ago Tuesday at our pharmacy, when I when to pick it up Thursday morning they told me they could not get it. I CALLED and ASKED CVS if they had it and they said yes if you bring us the prescription before 3pm Thursday we will have it Friday. Danny and I stopped Saturday to pick it up and they said "oh, it will be in Monday". I went there last night to pick it up.......yup you guessed it...they couldn't get it, now why do these places not call me and tell me this??? And why did they tell me they could get it when they couldn't!!!!! I was so upset, this creme is vital in helping to keep Jed calm. We put it on before we leave and by the time they access his port it is nice and numb. I spent an hour in the parking lot at CVS calling every pharmacy I could think of. I know I racked up a nice phone bill with all the 411s I dialed. Needless to say I just wanted to cry. Jed handled it very well. We put the creme on when we got there. Jed likes it to be on for at least an hour and a half but we could only wait an hour....AND Holly was off today. Jed really did handle all the little changes well. So anyway I think the infusion room nurse was glad the Jed was not ready because we didn't get counts back until 11, and then he had to go pee to check his PH level...it takes him forever to pee and he is never ready the first time. If he had gotten chemo today we would not have started until after 12 and it takes 5-7 hrs depending on his hydration. I know nurse Suzanne had to be relieved that we left! I did end up getting his EMLA at the pharmacy at the hospital. Then there was a problem with his morphine prescription!!!!!!! oh my. That added almost an hour to our wait.
But all is well, Jed is tired...from the stress! The good part was that Hop drove us today, I feel like a slacker when I don't drive us but it's nice sometimes! We will try again next week!
Tomorrow Jed is going shopping with Nana in the morning and then he is making corn bread tomorrow afternoon. Savannah is making cranberry salsa...awesome.... I have been given the only task I am qualified for, the green bean casserole!!!!!!! I can handle that. We are all headed to Adam's for the good stuff.
We had dinner Sunday at mom and dad's, Livie was there. oh Adam and Tiersa too but Livi was there. I knitted her a pair of UGGS and a fuzzy sweater for Christmas, I took them to try them on her, glad I did, I gave them to her right then because she will probably outgrow them by Christmas!!!! She is her same old squeezy self, trying so hard to talk!
So that's all for now, I'm sure I'll have pics from the holiday. We wish everyone a great turkey day. Enjoy your families.

GO PSU!!!!

Hey, I know I have been delinquent in posting, not much happening here. Jed is doing ok. He heads over to his dad's today for a couple of hours to see his brother and sister. Tomorrow I think an old friend from Penn State is stopping to visit, Dan Alexander is a member of KA, our previous fraternity. He has kept in contact, we love him and hope he gets here.
The weather SUCKS! I had an appointment last night at 6pm, the roads were so bad from our tiny snow and the stupid people driving that we traded for my mom's car, big Lincoln suv, and parked our little sled. It is so sad that for Dan and I our 'date' was a trip to my doctor's! But we did go get Mexican food afterward! WHOO HOO! The roads were slippery but the reaction of the people on the road made everything so much worse!!!! It is cold and nasty, I am not a fan of this weather. I think if I was rich and had very good winter gear and could afford to ski it would be different but alas not to be, so I just really dislike the winter. Mom got Jed a new winter coat the other day...just in time!
Savannah's senior class had a tragedy this week. One of their top students, a swimmer headed to Olympic trials in 2012 suffered heart failure in the pool and died the next day at Hershey med. Center. So sad. Red Lion has had more than it's share of crappy events.
Hope everyone is doing ok. if anything exciting happens I will let ya'll know!!!
Love J & K

Hi guys,
So no chemo today. His white count is now .4. Maybe next week??? Wait and see... as usual. He was pretty perky when he heard the news that we could leave! We went up to the pulmonary lab so he could get his inhaled antibiotic before we ran out of there. He was actually pretty perky on the ride up to clinic. He was singing and playing his DS. I on the other hand was hyperventilating! The chemo Jed was supposed to get today takes ALL day and the later we are getting there the later the nurses have to stay at the end of the day , we were late getting out of the house...surprise. Then of course there was traffic,,,stupid people. The left lane is for PASSING, if you are not passing move over, you are not the only person on the road!!!! On top of the usual fun I forgot to pick up his EMLA creme the night before so we had to wait in clinic for an hour until his port site was numb, and that deviation in his clinic ritual sends him into high anxiety mode. Such a relief to pull into the parking lot and thank god for Holly... she fixed him! After all these years you'd think I'd have all this stuff down pat....nope not me! Oh well. I do try though!
So after we left clinic we went to the mall so he could return a game that didn't work and stopped at Target to pick up some pictures...then I remembered at the last minute I mail ordered them...:). We stopped at the grocery store and headed home. Busy day for Jed! He was tired when we got home. He had his PJ pants on in less than 5 minutes after walking in the door! He has the beginnings of an infection on his big toe..ingrown toenail, I'm sure it's my fault. He has to soak it in Epsom salt and he has an oral antibiotic to take. The fun part is that this drug only comes in liquid (which he WILL NOT take) and a capsule which he says he CAN"T swallow. Nothing like adding 1 more little stressor to the mix. Fun
We ran out to give Hop a ride just a little bit ago. Mommo's car will be finished tomorrow..new computer thing. It has been a little scary, since Jed got sick and my old Subaru fell apart we are working with 1 car (Danny rides his bike a lot) then mom's car went on the fritz and then I hit the curb and flattened my tire....we were down to 1 car for all 4 of us! My car has a new shiny tire and mom's car will be picked up tomorrow so there is a little more of a buffer! I was afraid if Dad's car had a problem we would be down to just motorcycles...and it's cold! The days of Danny riding his bike are going away...so Jed and I will be hanging out here...(that's fine with Jed)! Savannah is home most days by noon so if I really need something I have her car. depending on where she goes to college I might have her car a lot! It really is getting cold out....i dislike that very much.
Jed and Danny are watching Get Smart right now. But they are both talking so much I'm not sure how they can follow the movie!
I mentioned before that a family we met in the hospital, Emily and James Alivia's parents, had adopted a baby boy. Well, 5 days before he was legally theirs his birth mother came and got him. How cruel is that? From what I have heard she is not mother of the year ( to all her other kids). That child could not have had a better home than with Emily and James. How much is 1 family supposed to handle? Loosing Alivia is beyond comprehension and now they have lost this baby that has been theirs for a couple of months now. I can't think of anything more hurtful. It's so sad. Cross your fingers, maybe she will change her mind..AGAiN.
well I guess that's all the news here and I have vented so it's all good now. I hope all of you are doing well....stay warm.
Love Jed and Kristin

Hey all. an update....... Jed felt pretty good this weekend. Yesterday he hung out and slept most of the day & then I took him out to eat......I had dessert & coffee, he had a steak and half my dessert! oh and his usual spinach cheese dip appetizer stuff. I should buy stock in our local restaurants! It seems to be our biggest expense! Food just tastes better out somewhere...unless it's at my mom's. Eating out seems to make Jed very happy and that is our main goal here!
Everyone slept late yesterday.....except me so everyone was up very late last night...2-3am, I just wanted to go to sleep but EVERYONE was so loud! Today we got up and drove to Penn State for the Family Carnival. They unveiled the 2009 logo, I posted it under here. It's pretty cool. The kid has a knight's helmet on like in the 4 diamonds story. We met Brent at The Waffle Shop for breakfast, Jed cannot go to to PSU without eating there. Jed had a blast, he played with all his "people"! He wore himself out! We left about 4pm and stopped at McDonald's...of course. He ate his Happy Meal and was asleep in 20 mins! It snowed on the way home, it didn't stick to the road, just made seeing hard. It was very windy and as we were going up the mountain the temp went from 39 to 29, thank goodness it went back up again as we got further south. Savannah and Newman (Katie) followed us, nothing like driving in zero visibility over a windy, snowy mountain while you stare in your rear view mirror to make sure your kid is ok! and then I did one of those weird things that I think only parents of sick kids do, Jed had been sleeping for over 2 hours and had not moved so as we were flying down the highway I casually reached over and felt his wrist....for a pulse, sick I know but...well, oh well. He was fine by the way! So we are home, and Jed is awake...he had a long nap! He is very tired though and kinda pale. We had to stop at my parents on the way home because he knew he was missing a pork chop dinner there today and wanted to pick up a to-go bag!
So, the carnival was fun...as always and it was great to see everyone....as always and the new logo is cool. Now both kids want the new logo t-shirts!
I am going to try to convince Jed to go to sleep so then maybe I can too.....geeze i hope! as soon as Savannah sends me the pics I will put them up. oh and she applied to Penn State yesterday!
Love Jed and Kristin

THON_09_LOGO

THON_09_LOGO
Originally uploaded by buckley04@verizon.net

THON 2009....the logo was revealed today!!!!!! THON is coming!!\

Jed and DJ

049
Originally uploaded by buckley04@verizon.net

This was Sunday when Amy and D brought over all the cards his class at his new school made for Jed!

Hey. So we went to the mall yesterday to pick up a game Jed had pre-ordered, it was all he talked about while we were in the ED Monday and Tuesday! Then he took me to Chili's with his gift card. Danny decided not to go and Savannah had to work so it was just Jed and I. As we were pulling into Chili's I clipped the curb and flattened my tire...nice. I guess the lessen here is driving when you are tired is not wise. So Danny ended up coming out anyway...he got dessert after he changed my tire! Today we went to clinic to see if he needed blood....nope, his counts suck but not enough to need blood! His white count still isn't even 1 yet! But he is feeling ok, that's all that matters. I had a hard time getting him to leave, he started doing crafts with the PSU kids that were there and he wouldn't leave! We finally are home, my wheel is getting a new tire put on it & I am going to take a nap! Jed is playing Wii..of course! It was nice to see everyone at clinic, it has been a month!!!!
Love J & K

Hi again. So anyway here's the dirt....well story anyway. Jed had a great weekend like I said before but by Sunday night he was pale & tired. I just figured the weekend knocked him out. Monday he cried when I woke him up, not that uncommon...he is not fond of getting up before noon. He stayed upstairs all day Monday and about an hour before the teacher was supposed to be here he started crying that the pain was much worse than normal. Of course I immediately thought it was his "schoolitis". But he wanted me to call clinic and they said by the time we got there he would have to go to the ED. He said he wanted to go anyway so I knew he was not just trying to avoid school work. I still kinda had a few doubts though when he asked to stop at McDonald's on the way up! He ate some chicken strip things and some fries. He said "well I know it's not my pancreatitis because that food would have made it 10 times worse"! I don't know if he was really hungry or just testing a theory. We waited barely an hour in the waiting room...that's fantastic but then we hit a wall, we never left there! The 7th floor was full so he stayed in the ED the whole time! His pancreas levels were elevated when we got there but by the next morning they were fine again. His stomach pain was lessened with IV morphine...of course and he needed blood. His white count was only .3, and everything else was low too. He got some blood and slept a lot and got lots of morphine and woke up yesterday about 5pm ready to go! We were out of there by 5:30! Deana, our nurse practitioner, came down and got us out of there quickly! That was the 1 good thing about not going upstairs, we got discharged fast! So by the time we left I had been awake for around 36hrs and Jed had had a good rest. He wanted steak for dinner, so of course we stopped at the store on the way home, he got steaks, mashed potatoes and Cinnamon buns. I was trudging through the parking lot and he was dancing and howling at the moon, yeah guess the blood helped! I made all the stuff when we got home. Thank goodness he was asleep buy 10:30pm, I couldn't have made it any further! So now he is feeling ok. We go back in the morning for counts and probably more blood. He didn't get his 8hr chemo yesterday naturally so hopefully his counts will be high enough by next Tuesday to start. They only really bad things about not going upstairs are comfort things..mainly for me! I had a waiting room type chair, no cell service, the bathroom was down the hall and I didn't know the nurses so I didn't leave unless I REALLY had to pee or to send a quick text home. By yesterday afternoon I got brave enough to run to the cafeteria , only because Jed didn't like the cereal selection the nurses had & by then I REALLY needed coffee & chocolate. So that is the latest excellent adventure of Jed and Kristin. i don't care to repeat it again but odds are...we will. The only thing that I was told this time that I haven't heard before was that Jed has a heart murmur. They told me that it is not uncommon and only is really noticeable when his counts are low because his heart has to work so hard to get the blood to where it needs to be. No one seemed worried about it and when I asked they said it's not a big deal at all. Ok, I guess in the grand scheme of things they are right but I am not telling Jed because he would stress about it.
Everyone else here is ok. Savannah got all our stuff packed in case we needed it, now I have to go unpack it! She is having work issues. She was only hosting, then she started to serve and really didn't like it. She wanted to go back to just hosting but the bosses there won't give her all her hosting shifts back so she will only work 2 days a week & that is not enough $ for her. I told here it's completely up to her where she works but to drive her car she has to have a job. I can't afford to gas her up and i don't want her taking money from her savings just to drive. So we will see what happens. No matter where you work there are jerks.....everywhere!
Ok, I guess that's it for now. I played with my camera all night and took all kinds of pictures in our little room and when I put the card in to load them to my laptop there were only 2 pics on the memory card.....weird.
We are headed to the mall when Danny gets home so Jed can pick up a game that he ordered & I can get him a new Sim card for his phone, it just stopped working...weird, again. Then Jed is taking us to to dinner at Chili's! He has a gift card from there that his school nurse, The wonderful Mrs. Kirby, gave him. Not a bad deal, I'm up for some fajitas....and some more sleep!
Love Jed and Kristin

Hi, quick update, all is well, we spent a fun 24hrs in Hershey's ER...he ended up needing some blood, got home last evening. I will give you all the gory details later.
Love J & K

Hey all. How was your weekend?? Ours was great, we love canning weekends. We had 4 gamma Phi girls and 2 Acacia guys here for the weekend. They canned Saturday and a little bit on Sunday and raised over $$3,000.00, that is awesome. They all went out Saturday night to The Hungry Parrot and bowling, Jed was in heaven. Jared was here and went canning on Saturday too. PSU lost, that was the only crappy part of the weekend! These kids just amaze me, they NEVER get aggravated with Jed, no matter how many times he wants to play Wii, they do whatever he wants to do he whole time they are here!
On Sunday DJ and Amy stopped by, DJ's class in his new school made cards to get to know Jed, it was REALLY nice. Amy went in to do a craft and DJ said he wanted his new friends to get to know Jed. So cool, D is an awesome kid. Congrats to Amy's friend Kim and her family, they are getting a new baby on December 1st! Another little girl, Kiara is getting a sister!!!!
Speaking of new babies I didn't mention before but a family we got to know on the 7th floor, Alivia's, just adopted a baby boy, Griffin....we are so happy for you Emily and James.
I think that's about it, Jed is ok, he is tired and didn't feel well last night but I think he is just worn out from the party weekend he had. Of course he is feeling bad also because he has school tonight,,,,,,,,,this drives me nuts. He is fine once she is here but he seems to just anticipate it so much and he worries about his homework. I know he has trouble concentrating for long and he gets tired easily but it drives me nuts how much he stresses about making sure he gets nothing wrong. He absolutely hates getting something wrong and he would rather avoid it or put it off as long as possible instead of doing it and getting something wrong. It's hard also because when I make him work on his homework and he starts to feel bad I can't tell him to keep working, I have to let him lie down or sleep and then he starts to freak out because he slept when he needed to be doing his homework. It is a vicious circle! I can't wait until he is back at school and leading a normal life....but I guess no one wants that more than him. He said the other day,"I wish I was in school because I think I would like it, I don't really remember how it was to go everyday". Poor guy. I told him to just keep thinking it won't be long and he will be going to school everyday and not even thinking about all of this anymore.
He starts 4 weeks of 8 hour chemos every Tuesday tomorrow. On the 5th week he has a spinal tap and then starts 5 days of steroids & then he should have a month with just home meds again. That's the plan, we will see what happens.
I just got a text from Savannah, she doesn't feel well either. Oh yea. Welp, the laundry calls and I have some knitting to do...guess what people are getting for christmas!!!!????? Sorry in advance to all the poor people getting knitted gifts from me!
Love Jed and Kristin
Pics under here and as soon as I have some from the bowling trip I will put up a link

Dudes

042
Originally uploaded by buckley04@verizon.net

Jed's great buddy Brent, are we looking at a future ACACIA member??

So cute

041
Originally uploaded by buckley04@verizon.net

Liz and Jed

???

040
Originally uploaded by buckley04@verizon.net

Doing the line dances of THONS gone by!!!

WOW~

020
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

There is nothing like a garbage bag of money!!!

$$$$

018
Originally uploaded by buckley04@verizon.net

Counting the loot from a hard day of canning!

Hey all, just a quick note here is a link to a page about a little boy in Australia who has relapsed for the 2nd time & has meningitis. His father is part of the relapsed ALL listserve I belong to. Keep him in your thoughts. The way his father describes him is so funny and so typical of all the sick kids I know.
http://www.caringbridge.org/visit/nathanielcervas
Here is a quote from an email his Dad wrote, it really sums up how we feel about these kids:
"But above all it is Nathaniel himself for whom I now have the greatest love and respect. He was just a baby when he started. Now you could only call him an intelligent person, who has dealt with his life of extreme disadvantage with kindness, forbearance, humour and dignity. Quite frankly it is a privilege to know him."
Cross your fingers for this little boy he is really fighting. It is all so unfair.
Love J & K

Hey, Jed was awake for a couple of hours. He feels pretty bad, very nauseous. He is asleep again, I hope he sleeps all night. I'm not sure what's going on with him this stuff just starts and the goes away, if he is still this bad in the morning I will call the clinic and see if there is anything I can do. Maybe it's just a bug. Still no fever though.....that's very good. He woke up about 4:30pm crying because he didn't get any homework done today. Of course that makes me feel great because I told him he had to have his homework finished by Sunday night so when I wake him on Monday he won't start flipping out about getting it done. Danny and I tried to explain that he has to feel better to do the homework. He sometimes just gets so focused on something and he will not calm down or let it go. He came down and gathered all his books and papers, organized everything, gave me instructions on what not to touch and then he was sick again. He threw up and went back up to lay down. I was working on his computer, trying to get rid of the lovely virus he seems to have acquired. When I didn't get an answer to a question I asked I realized he was asleep. I gave up on his computer for now. Savannah tried yesterday and I worked on it last night and today...still has it. The cleaner program just can't get rid of it. I guess I have to take it somewhere. I won't even describe what was popping up when he went to his home page....oh my!!!! So now I have it to the point that nothing comes up except the cleaner program over and over trying to get rid of the virus. Nice.
So anyway Jed needs to get better we have PSU kids coming this weekend for a canning trip. If you are out anywhere and see Penn State kids asking for money....give up your change!!!!! I think we are supposed to have 7 kids on Friday and LV is coming Sat so then we have 8. I am making chili because I don't know what else to feed them! We always look forward to our canning weekends. I know even when Savannah goes away to college she will come home for these weekends.
So anyway, Jed is sleeping, Danny has to get up at 1:30am for work so he is sleeping and Savannah just left to go meet friends. I am here....talking to you! Well it's more like talking to myself! Welp I guess that's about it, Jed and his computer seem to have a virus, Danny is working more overtime so he is trying to get more sleep and Savannah has a life!
Love Jed and Kristin

Hi all. Jed is ok. Seems to having a diarrhea issue but it is slowing down now. I have no idea where this stuff comes from, it just appears and then goes away...weird. He is getting better. anyway more later.......My reason for this update is really to tell you:
Everyone sign up for igive......go to igive.com and select Penn State Dance Marathon as your charity, then do all of your Christmas shopping thru there and THON gets $$$$$!!!! Even just surfing the stores can win THON 50,000.00! Every store you can think of is on there. Even ebay!!! sign up
Love J & K

ok, now he is pukey too...no fever though, the life of a chemo kid is always unpredictable...and sometimes unpleasant, poor guy

YES WE DID

DID YOU?????????

So today was the toy ride and the weather was perfect. Jed went, he rode with Hop. He was up and down and all over the place. Happy 1 minute and crying the next. Feeling horrible and then fine. He was crabby but talkative, nothing was right but he wanted to go......oh yeah. As soon as we got there he wanted me to call someone to drive the hour up and drive him home, he said "tell them to hurry"! Well we went up to the 7th floor to see who was around. We saw the lovely Denise...HI!!!! He said hi to some of his nurses and Dr. Neely and Dr. Khan. We got to see Katrina and Diane from child life too. It was nice but very weird. I don't think we have been away from them for this long since Jed got sick. So after our trip upstairs Jed was recovered enough to make the ride home. We took the back way, much better scenery and we didn't have to go 90 mph. Geeze, on the way up the group was so spread out we were doing 80-90 mph to keep up. I wouldn't have cared but my helmet started to lift up and loosen up. So I spent the majority of the ride doing 90 either with my helmet flying behind me like a hood or with just 1 hand while the other one was holding the helmet on. I finally could not take it anymore, I was afraid it would fall off and hit someone behind me..Dad and Jed! We all stopped and Danny helped me fix it. We ended up right back in the pack because there were sooooo many bikes!!! Anyway we made it and the ride home was wonderful. I refuse to think about the fact that this weather will be very short lived...so sad.
Of course we got home and I suddenly remembered there was no juice, no milk, no nothin'! Jed and I went to the store.......he was crying about how bad he felt but he wanted to go to the store. He spent the whole trip telling me, where to park, what to buy, why I should by this and not that. Very interesting. We went to McDonalds for my coffee and their shakes. The closest McD's was so crowed there was no place to park. We went to the other 1 and Jed flipped out because he wanted me to go in and not the drive through...they wait on the people inside first ya know..ok. Whatever, he calmed down until they told us they were out of shakes, and yogurt fruit things and cookies!!!!!!!!!!!!!!!!!!!! Hey they had my coffee!!!! Someone was looking out for my mental health. We came home and made our frozen pizza and the Mrs. Smith's apple pie is out of the oven waiting to be mated with the vanilla ice cream so all is well....for the moment. He is VERY moody today. And no I have not detoxed from the sugar of Halloween....next week, really! Maybe I might need rehab?? Ya right who has time!
Oh and the other slipper is FINISHED!!!!!! of course Jed had to sit down and show me how 1 was a tad bigger than the other and how I should fix that for the next pair.....next pair.HA! Now I know why I only make stuff for Livi, her stuff is small and she doesn't know if the size is off or if it's a little sideways.
I think that's it. There were a lot of bikes and a lot of toys. I bought toys I knew Jed would like to win at hospital bingo.....just in case!!
Now Jed is walking around the house telling everyone he is sorry for the way he was acting....now who feels like a creep....yup me! Oh well.
Time for pie, that makes it all better, just like cookies.
3 more days.....don't forget to VOTE!
Love Jed and Kristin
some pics under here

ad tiersa livi

ad tiersa livi
Originally uploaded by buckley04@verizon.net

Wow, the only reason i let this group in my house is the lamb was cute...the other two...not so much!

bopeep in the mirror!!!

bopeep in the mirror
Originally uploaded by buckley04@verizon.net

Everyone loves this lamb, see nutty bopeep in the mirror???

bunny adam

bunny adam
Originally uploaded by buckley04@verizon.net

the crazed bunny

my little lamb

my little lamb
Originally uploaded by buckley04@verizon.net

OMG is she just the squeeziest thing?????
despite the look on her face she really does like me...i think!

Hi. Trick or treat was tonight, we had fun. Megan brought Jase up, he was dressed as a knight! Jed went with them trick or treating, he didn't dress up or get candy he just walked along. How many 11 yr old boys don't ask for candy?? Grace stopped by to check out the scene. Savannah and I worked on our political pumpkins last night and Jed and I did the others today. we have been busy with our creativeness! I am making slippers for Jed, I have 1 finished, it took me 5 days. Needless to say, I have had some issues with the slipper.
Jed is feeling ok today. When there is something he wants to do he can sort of push aside the crappy feeling but as soon as that's finished he is finished! His pain issue seems to be under control right now but he walks slow and sometimes needs help getting up...(so do I but i don't think that counts). So anyway he is ok, better than a few days ago and his methotrexate didn't seem to get to him as much this time. Good!
I am very glad the candy is out of my house. I know I ate just about a whole bag of "fun size" snickers all by myself, they were fun alright. I broke down and opened the bag of peanut butter cups this morning, great breakfast. I am grateful we had no peanut M & M's, I would definitely be sick right now. I just could not make myself "back away from the candy bags" I even had a pocket full of wrappers after I finished handing out candy...so sad. I am not the only one in this house that ate the candy though, Jed ate starbursts and Danny ate whatever was open. Yes it's good that it is all gone but now I have to go through withdrawal...candy detox is so hard. I guess I will have to concentrate on the other slipper, yippee.
I am really tired of all the campaign phone calls. No I do not want to go see Sarah Palin tomorrow...yuck... BUT Bill Clinton did call me..we're friends, we rapped about voting and stuff. I thought I was special until my neighbor said he called her too, and he called the other neighbor,oh well. Ok, yes it was just a recording, I knew that. I didn't try to talk back to it or anything.. really
My household is extremely into the presidential campaign stuff. Savannah sits with her map every evening trying to predict the electoral college votes and Jed watched Obama on TV last night and he watched Keith Olberman's and Rachel Maddow's shows afterward!! Thank goodness he has stopped the "I'm Joe the Plumber" announcements every 5 mins. Danny is even hooked on it all. I am so proud! Yes we are a tad obsessed. But just like trick or treat, it will all be over soon. I don't think it's any healthier than the candy either! Thank goodness we all have the same political feelings in this house or there might be a problem. Well I guess not, the people with the other opinions would just have to move!
Ok, gotta go. I have no clue what we are doing tomorrow but Saturday is the Hershey Toy Ride. We rode last year for the first time, I hope Jed is feeling up to going again.
Love Jed and Kristin check out the pics I posted under here

Neighbor's kid, my pumpkins!

005
Originally uploaded by buckley04@verizon.net

1 slipper, it has taken me 5 days to get this slipper right, Jed might get the other one next year!!!!

013
Originally uploaded by buckley04@verizon.net

Yup, I did this awesome pumpkin..yea me

009
Originally uploaded by buckley04@verizon.net

We have cool pumpkins!

008
Originally uploaded by buckley04@verizon.net

Our Pumpkins!

011
Originally uploaded by buckley04@verizon.net

Hey, so what's new? Yesterday was a wash, not only the crappy weather but with us too. We did a lot of nothing! Jed woke up yesterday in pain, he was bad on and off throughout the day. Near 3pm it got worse so I called the clinic. They said to double his morphine every 2 hrs over night. It seemed to do the trick pretty quickly. He was asleep before 5pm. Ya know if people were listening in on our house we would probably horrify them, Danny was headed upstairs and I asked him to "make sure Jed is breathing" he said "yup, he's breathing", I said "poke him and make sure he is pink"! We are so matter of fact about that, We really don't mean it that way...sort of. Anyway Jed wandered down here at 8pm to watch the biggest loser, I watched it while I ate the Halloween candy we bought to hand out tomorrow!!! So sad. I turned around and Jed was standing there with his butt hanging out, I said "what are you doing?" He said " I'm Joe the Plumber"!!!! What a nut. We still have to carve our pumpkins. This weather is very sucky. I am not a fan of the cold and really dislike the grayness.
Jed had school Monday evening and they got a lot accomplished. I guess that's about it.
I shouldn't be complaining. I belong to a listserve for parents of relapsed ALL kids. I never post but I always read them. It is a big reality check for me. The kids on here are so incredibly sick it's unbelievable. A new family joined this morning and the mom wrote that her son had relapsed yesterday, but he was only originally diagnosed in September so it is an early relapse...not good. To top it all off this child had a stroke 2 months ago because of a reaction to a chemo drug....and he is only 2 1/2. Very frightening. Another kid now has major brain damage because with his very weak immune system he developed meningitis, he is 5 and lives in Australia. There are so many and they are so much sicker than Jed...I have to remind myself of that when he starts to feel bad and I worry. He is sooooo much better than all these other kids. And then there is always the "teacher factor". Sometimes he seems to get worse when it's getting close to school time! Yesterday I gave him the meds he needed but I kind of tried to ignore all the drama thinking that he would get better or forget about it. Of course that did not happen and then I felt bad because I was trying to act like nothing was wrong...poor Jed! Today is Wednesday, I wonder how he will feel when he wakes up he took all 20 of his methotrexate last night. We shall see!
I have to say as much as I am a news junkie and really into the election I am sooooo ready for it to be over! I wonder why PA does not have early voting??? Jed always goes to vote with me and if Savannah is home I'm sure she will go too....it's a very big deal.... GO VOTE!!!
I guess that's all for now, I have let Jed sleep in long enough, I felt bad for him this morning so I am slacking!
Love Jed and Kristin

Check out the pictures from the THON 5K, link is on the right!!!!
Nana said Jed was yelling at the runners "go faster my Pappaw already went by"!

023

023
Originally uploaded by buckley04@verizon.net

Hey it's Dr. Comito!!!!

025

025
Originally uploaded by buckley04@verizon.net

jed and pappaw

042

042
Originally uploaded by buckley04@verizon.net

Just sooo cute!!!

Acacia and Gamma Phi and Jed!!!!

068
Originally uploaded by buckley04@verizon.net

Hey everyone. Jed is feeling pretty good, his newest thing is that his voice is scratchy and he likes to talk A LOT to hear it! It's been pretty uneventful around here. Saturday I spent the morning helping my lovely hairstylist friend, Alecia, curl hair for a bridal party..I was "the curler"! I left at 8:30 am and got home after 1:30 pm and Jed was still sleeping! So of course last night he stayed up pretty late. This morning Nana and Pappaw picked him up at 7:30...early for the night owl! They went to State College for the THON 5k. Pappaw runs it. Aunt Min was there too. After the run some Gamma Phi girls and Acacia guys took them all back to the frat house to carve pumpkins. Jed brought his home! He had a great time...as always, he loves his college friends.
Savannah, Mom, Tiersa and I went to a baby shower. It was for Alisha Hildebrand, well Morgan now. Anyway it was fun. This family is a huge part of our lives. They have been a constant source of love and support for many years. The oldest daughter in this family was my best friend many years ago. Savannah Renee is named after her. We lost her to this sucky disease when she was 20 and I was pregnant with Savannah. It's strange how she cannot be here physically but is so much a part of my everyday life. Savannah was born 3 1/2 hrs before Renee would have turned 21. So anyway, Renee gave us a wonderful gift, her family. We love them very much and are soo happy to help welcome the 1st grandchild into this crazy clan. Congrats to all of them, Alisha, Michelle, Andra, Cale, mom Peg and daddy Daryl, oh and Daddy to be Kevin!
So that was our weekend. Jed is now eating warmed up Domino's pizza, of course the pizza guy was here yesterday! I think it was a girl though...like it matters, they all know our house because we keep them in business. Wow I wonder why I can never lose that 20 lbs! Maybe the brownies and cookies that I like to eat after I eat the pizza don't help either! oh well.
Welp, I guess that's all. Thanks to all our PSU friends for entertaining Jed. Oh, and how about that game last night????!!!!!! oh yeah!
Love to you all.
Jed and Kristin

Hey. Well it used to be that Tuesdays sucked because he had chemo and Wednesdays sucked because he felt horrible from the day before. Now only Wednesdays really suck (which is a good thing) because he takes his methotrexate Tuesday night before bed..20 pills! Yes 20! They are small but still, good god. Every Wednesday he feels really rotten. Today is Wednesday...he feels rotten.
We babysat Livi-Mac this morning. Jed is so in love with her! She is a blast but Jed barely made it an hour before he was sleeping on the couch..poor guy. He did have enough time to show her the "good" TV stations...cartoon network, Disney, Nickelodeon and Nick Jr. She enjoyed Dora the explorer very much and when Jed sang along she wiggled and screamed so much I was worried she might pop! She feel asleep about 15 mins before her mom came home.
I did break down and rescind my rule of no heat on until Halloween, I was cold! I have it on very low but it makes Jed happy! Cold weather sucks. Jed is back in his bed asleep. He feels yucky. Uncle Adam gave us pumpkins but no carving tonight. Today is Wednesday and Wednesdays suck.
Love J & K

Jed introduced her to the magic of Nick Jr. cartoons!

Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

She loves Dora, and now it begins!....

The amazing Flying Olivia!

Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

kids are weird, she looked like a seesaw!

What a pair!

Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

She wore him out! Total party girl

Jed watching the Biggest Loser, Yes I DID turn the heat on!

Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

Hi all. Not much new here. Jed had school Monday night. She will come Wed. and Thurs. also. He went to Grace's today to cook. They made mini quiches...not too bad! Grace called after they were only there a little bit and said while they were at the grocery store Jed got very quiet and slowed down. He was ok for a half hour or so when they started to cook but the smell of the chicken cooking made him sick. He went downstairs to the recliner to rest and Grace did all the smelly stuff. Jed came back up to mix the ingredients and get them ready to bake. He didn't eat all day but just a few minutes ago he asked for potatoes sliced and broiled. He loves them, the are like big french fry chips! He also made some toast, so hopefully he will get something in. When he doesn't feel well and doesn't eat he gets weak very quickly. He's hangin in his bed. I figured chasing Grace around the kitchen could be considered his physical activity for the day! Tomorrow morning we have to get up and go babysit Livi-Mac for a few hours. That's about all. I am very grateful that Jed's newest must have food is a potato!!!!!
Love Jed and Kristin

Wow I waited almost a week! I guess by that you can tell not much is happening here! Jed had clinic on Tuesday and his counts are good. We don't have to go back for a month!!!!!!! Of course after that he has 8 hr infusions every Tuesday for 5 weeks but for now we have a month off! We made a plan with the Dr. as to how to handle the transition back to school. Getting him to go has been a problem. His Dr. said it is going to take him awhile to feel up to going and to have the strength and endurance to make it even a few hours. He has been knocked down so far he needs some time to recover. He doesn't feel so good when he gets up so mornings are out and he is anxious about not being caught up with everyone else. We decided to concentrate on getting a schedule set at home. So all week he has been getting up at 8am and the hope is he will go to bed earlier. He also has to do some kind of physical activity everyday. A couple of days this week he walked with Grace and I and the other days he did his Wii fit. One afternoon he spent at Grace's playing with Jase. One day we made sloppy Joe's, got chips and a Happy new house cake and took it to Dj's new house for them and last night Uncle Adam and Tiersa took Jed and DJ to the haunted hayride. I got to babysit Livi-mac!!!! But she crashed by 7pm! Oh well so much for the party! Jed and DJ liked the hayride but Jed was a little scared! He hung on to Uncle Adam! When he went to bed I told him to think of something nice so he wouldn't have bad dreams. He starts saying "baby lamas frolicking in a happy field" over and over! Weird little kid!
Dj is headed back over here today sometime to play Wii. Jed got his thank you notes finished from his birthday but I forgot to tell him where NOT to write on the back of the postcards! So now I have nowhere to put the addresses and I have to find envelopes to fit the postcards! Needless to say they will be even later going out!
I was very busy this week! I cleaned the kitchen top to bottom and we got rid of our diner booth in the kitchen...it was falling apart. I got a table and chairs from my parents basement that belonged to my dad's grandma! It's yellow.....very cool! The next day I emptied and cleaned the dinning room and moved some stuff around. I had so much junk shoved into drawers and cabinets! It's all gone now! This coming week I guess I will head upstairs. I want to paint the bathroom a different color.
Savannah's application has been received by American University...now we wait!
So that's the exciting week we have had!
What happened to the awesome weather?????? I do NOT like the cold...that means anything under 70. Oh well Love Jed and Kristin so do I paint the floor black or red?????

So, hi all. The wedding was great. Jed did a great job and got Jase, the son of the bride and groom, to where he needed to be! We had a good time. I actually got to dance a little bit! (not that good but who cares) We left as soon as Jed got his cake! He was so obsessed with the cake I thought he was going to follow the people into the kitchen when they took it to cut it up! It was really good though! It was all very well done and beautiful. Jed, Dan and my parents looked terrific. Savannah went to homecoming, when she gives me pics I will put them up.
Today we almost finished the porch! We have a few trim pieces and a piece of rail to put up yet but it looks wonderful. so nice. I got some weeding done outback and put up a fence to keep the stupid dog out of my butterfly bushes. What a dork, he loves to run back and forth through them! Adam, Tiersa and Livi stopped by so I got to see my baby, what a chunk! She was chatting away!
Jed is feeling better. the modification in his pain meds seemed to have worked. He even went to wal-mart with Mommo today! I guess that's it. The weather has been awesome. I haven't been able to ride, too busy. Oh well, I'm sure once it gets cold I will have plenty of time! I guess it's not really all about me anyway......damn.
Gotta go, nothing to do just nothing else to say!!!!
Love Jed and Kristin

Jed in a suit and tie!! So grown up!

015
Originally uploaded by buckley04@verizon.net

Mommo, Hop, Jed and me!

029
Originally uploaded by buckley04@verizon.net

Hi, quickie update, Jed seems better this morning. His pain is under control right now....yipee! Let's keep it that way. Also, Savannah got her NCP stuff completed last night with little issue, again,,,yipee! Ok gotta go strip paint from the brick....... so much fun.
Love J & K

Hey everyone. Well Jed is having some pain issues. The steroids and his other chemo drugs are really giving him a lot of bone pain. He can't sit for very long and then he has trouble getting up. This evening it really seemed to ratchet up a few notches. We were thinking of heading to the hospital because his oral meds are not touching this pain. We decided, with the Dr, to try adding a second fentenyl patch and to give him double the morphine dose to try to get on top of the pain instead of chasing it. There are no beds at the hospital anyway so he would have to get all his pain meds in the ER.... again....please no! I am waiting to see how this works, hopefully it will calm the pain down. He's pretty snowed right now!
Between this and dealing with all of Savannah's financial assistance papers I feel a little nutty (more than normal). Her application to American has been received and she sent one to Towson and Rutgers. There are a few more on her list too! I know she is a no brainer for Towson but the big hope is American (it's more than double the price), anyway there are so many aid papers and the student loan situation is a real mess. I am thinking that there might finally be an upside to me not working...my w2 was embarrassing and that is actually a good thing with all of this! The other day I was feeling pretty good about the fact that I have a kid as driven as she is, don't know how that happened, but if she gets into American and then we can't dig up the money I will feel so very bad. Ya know I wish I had known at the age of 17 and 18 that the decisions I was making would directly effect my child when she was that age. Never have I regretted skipping college more than I do now. A better paying job would have made a huge difference, I wish I had been smarter.
Anyway so we are working on all this stuff and then we find out that American has a NCP, that is a non-custodial parent information sheet that MUST be filled out. Of course that was a little bit of an issue but it is supposedly going to be done tonight. we shall see. Filling out the papers does not obligate you financially but they do use it to judge the student's "need". How stupid.
Whatever, cross your fingers, a yes to A.U. would be amazing! So that's it. I am making Jed his regular diet of sliced potatoes in the oven and a hot dog. The bun must not be broken and it should be toasted. Yes master!
gotta go Hey to Amy :)
love Jed and Kristin

http://www.flickr.com/photos/buckleysmithslatton/sets/72157607860113132/
Here is a link to some photos that were taken of Jed at camp. A professional studio donates their time and gives the parents the photos and release for prints free. So nice!
Love J & K

Hey. Just a short update. Jed's teacher came tonight. He was anxious about everything. He gets himself so worked up, acts extra sick and then he doesn't want her to come but when he doesn't have school often it just makes it all worse! Just builds up. So anyway, he had school tonight and after she left he was perky and talkative and acting crazy. His relief was evident! I told him that I have been very easy on him and that is going to stop, well at least taper off!!! I know, I know, I will be tougher!
So that's about it. This weekend is Megan's wedding. Jed is walking Jase (her son) down the aisle! This should be wild! Grace, as the mother of the bride, is all ready with the new dress Savannah and I helped her find. It's going to be a big event. I hope to get to stay for the reception this time!
So anyway. Hi Trish. Hi Liz.
Hey Christie.... you talk on a cell phone...not pee on them, get it together!
Love Jed and Kristin

OMG

001
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

Are they just so cute or what?!!! Jed and his main squeeze Holly!

They all sang Happy Birthday to him at clinic!

Bye Bye Rotten wood!

002
Originally uploaded by buckley04@verizon.net

He is reading the directions!

003
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

He has so many tools but doesn't use them much!!!

Workin' hard Dan!

006
Originally uploaded by buckley04@verizon.net

Danny and Hop

013
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

Such a good team! Danny is SOOOO helpful!

I Love to scrape paint!

012
Originally uploaded by buckley04@verizon.net

Hop

027
Originally uploaded by buckley04@verizon.net

Bye Hop! You Do Good Work!!!!!!
Don't forget we have a little more work to do!

Hi ya'll. Jed is starting to feel better. Friday he and I headed to the grocery store. We made it about halfway through when he had to go home because he felt so bad. Saturday he felt a little better and Sunday he spent the day at his dad's. Today we finally made it back to the grocery store and all the way through! He is having some back pain and nausea but he finished the steroids Sunday morning and I can see a difference already.
We worked on our front porch this weekend. It was so rotten that when I hit it with a hammer the hammer stuck in the wood...yuck! We , Dan, Dad and I, ripped it all down and then we put it back up again! Well Dad did most of that part! We still have to put up the support posts and the railing and some trim but the framing and decking is finished...yea! It looks great and I will never have to paint it ever! I have lots of pictures of dad working and Danny watching...ok, helping! Today I started getting the paint off the brick out front. It seems that whenever the former owners painted any part of the porch they splattered paint all over the brick. That is just a ton of fun...stripping and scrubbing the brick. It will take me awhile to get it all off but it looks better already. So that's what we did all weekend. Busy busy! Jed would come out and sit in the sun for a little while and then go back to his room. He did manage to come out long enough on Saturday morning to explain to Dan how to make the support posts holding the roof while we worked. He knew how many nails Dan should put in and the exact spots to put them! He does like to direct!
That's all the news. My house is a wreck, full of tools and junk. Our dining room table seems to always be covered in stuff, drives me crazy. I need and organizer person to explain to me how to get it all straightened up and where to put stuff! Oh well.
Gotta go I am tired!
Love Jed and Kristin

Hey. It's pretty quiet here. Jed is not feeling so great. I think it's the steroids. The other chemo drug he is taking is not that wonderful either. The steroids are only for 5 days, the other one is for a month I think. My hope is once the steroid is finished he will feel better. He is sleeping a lot and eating little.
We are starting to work on the front porch. Danny and I started the demo part today. So I have 1/2 a porch now!
I got an ipod!!!!! I got Danny, Savannah and Jed one for Christmas last year but I have never had one. Danny brought it home for me yesterday! I already have 160 songs on it, of course as soon as I put the ear buds in my ears someone starts yelling for me but hey I have one now! it's pink..cool.
So I guess that's all, like I said quiet here.
Ok, gotta go the VP debate is starting soon........ I will refrain from making any Sarah Palin comments.....oh well.
Love Jed and Kristin

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