Tuesday, December 30, 2008

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

Saturday, December 27, 2008

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)

Wednesday, December 24, 2008

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

Tuesday, December 23, 2008



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

Saturday, December 20, 2008

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

Thursday, December 18, 2008

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

Monday, December 15, 2008

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

Sunday, December 14, 2008

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

Wednesday, December 10, 2008

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

Wednesday, December 3, 2008

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

Tuesday, December 2, 2008

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