Ocean City 2008 003

Ocean City 2008 003
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/

We are here!!!! He is so skinny now I'm afraid he will wash away!
We are having a blast. played on the beach, ate crabs at Hoopers, had a drink (me), rode go-karts and the guys had ice cream at Dumsers. The weather is awesome and our hotel is nice, great view. Ocean City is cleaner than the last time we were here. Lots of new construction, insane, beautiful houses down at the inlet....weird to see them down there! I want one. :)
More later. Love Jed and Kristin

Livie-Mac and A

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

Miss Livie-Mac gets a big chuckle from great grandma "A"!

Jed in a box!

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

Jed getting his inhaled antibiotic. I love that he had to sit in this box! He, on the other hand, was not thrilled! Hence the Loser sign he is giving me!

He did well today. His counts are ....so, so but not bad enough to get blood. He could get platelets tomorrow if he wanted to but of course he has decided not to. We are leaving in the morning...so far! We are packed and as of right now everything is a go. Savannah has to stay home.. :(. She could not get off work and she is getting her senior pictures taken on Thursday..Nana is going with her. The only good thing is that I don't have to listen to them fight for 3 hrs! I almost had to throw 1 of them out of the window on the ride to see "A" yesterday...and that is barely an hour ride! They were even in different seats AND they are 6 1/2 years apart..what is there to fight about? NOTHING! but they make stuff up! Oh my, can't wait for Miss Livie to have a sibling!!!!!!Anyway we will miss Savannah at the beach but the dog is thrilled she is staying home! Ok, I guess that's it. If our hotel has WiFi I will update from the beach....YEA the BEACH!!!!!!! Sun, sand, ocean, crabs and corona! YEA!

Get better quick Mommy~! Love Jed and Kristin

Thanks Christie for leaving such great comments!

Hi, Jed seems to be feeling better, at least until night time. When he is tired he feels worse..of course, but all in all he is getting better. The GCSF shots he is getting don't seem to be bothering him yet. Maybe we will get lucky this time and they won't be a problem. We are going to Baltimore today to see "A" (my gram). Tomorrow morning we have clinic and Wednesday morning we leave for the beach.....I Hope!
Gotta go,
Love K & J

Hi. Well we are still home. I was really unsure last night if we would stay here or go back. He woke up feeling pretty good. He decided he wanted to go to Grace' but changed his mind before she got here. He is just worn out & when he realizes he can't do something he really wants to do he gets very upset. He doesn't understand that he can't get this chemo and run right out the next day, this is hard core crap. Just coming home from the hospital is exhausting. He did go to see Miss Livie-Mac with Savannah today. Mommo was babysitting for a few hours so they went to "help" which means play with the baby! I ended up down there too! Of course as soon as I walked in they handed her over with a VERY full diaper, nice. She did her thing..fell asleep and my kids did what they do best..cleaned out Adam's fridge! I hope he didn't want that left-over pizza!
When we got home yesterday Mommo had put the Penn State sheets, comforter, pillows and rug in Jed's room. He was thrilled! Today she and Hop bought him a mattress cover and storage bins for under the bed & a new garbage can! Danny ordered a TV stand and a little cabinet that should be here next week. As soon as we get it all together I will post pictures. I also have some pics of Jed with the 2 design people that painted his room and got him his new bed. I'll put those up later too. So as of right now we could stay home and all will be fine or we could leave at any time to go back to the hospital. I have no idea what is going to happen. Even as the effects of the chemo start to dissipate the shots he's getting to bring up his counts cause bone pain...he just doesn't get a break. I am still hoping he is well enough to leave on Wednesday for the beach. I know he will have fun when we get there but he's worried about being to far from Hershey..I am too! So we are still in limbo mode with all that.
I am in the middle of trying to get all my paper work together so I can go back to work for 10 paid days. I have to do it every 26 weeks in order to be off on medical leave. So I have to get letters from my doctors saying I am fit for work and then after I have 10 paid days in I have to do ALL the paper work to go on leave again. I can't tell you how stressful they make it all. We are shut down the week I am supposed to go back so I figured I should show up on the day the plant opens again...well that is right but I have to go through all the crap to get released to work on my return date...I guess the medical dept people have to work during our shut down. It will be nice to actually get a few pay checks, just enough to get used to it! I am super stressed that Jed will be inpatient when I have to work. I am panicking even thinking about being away from him all day. Mommo is going to come stay the days with him and I will just go to and from work from the hospital. It's going to take me almost 3 weeks to get 10 paid days in because we have clinic every Tuesday...unless he is in the hospital. Oh well what am I going to do? Gotta do what I gotta do I guess! Yipee. I doubt I'll win the lottery before July 3rd.. :(
Well I have to go now, I have the pleasure of waking a sick child to give him a shot that makes him sicker...cancer sucks.
Speaking of cancer sucking a big hello to Danny's mom..Jean and LV's mom..Roxanne, both are fighting this sucky disease along with Jed..oh and Janiece, she is our child life expert at clinic. Hi guys, lots of love.
Ok I've got to go get this shot over with. Love Jed and Kristin

Hey guess what...we are home! Yup I know I am surprised too. Danny came up to visit and Jed was awake tasting some chicken noodle soup & he told Dan 'I want to go home" so here we are. I'm not sure yet how smart it was but if I had said no he would have freaked out. He feels miserable. I have all the same meds here but he has to take them orally, IV is so much better! So we'll see. He is in his room moaning, I told him we could run right back up but of course he said no way. gotta go love Jed and Kristin

Hi. Still here. It was a long pukey, poopy night. I turned off the light at 3am and 10 minutes later Jed woke up. He was up and sick until almost 8am. We finally got him to sleep, he is sleeping now. He can't keep anything down or in, so we just wait, wait for this crap to leave his system. He will have to start daily shots tomorrow to help his counts recover. I have no idea how long we will be here. Jed usually just wakes up one day and says "let's go" and we do. The beach is looking more like a long shot everyday and I have to cancel by Sunday to get any deposit back. Two more days, we'll see what happens. I better publish this because I only have a hot spot for about 10 minutes at a time!
Love Jed and Kristin

Hi, we are still here. His chemo ended about noon today but he is feeling really bad. This med gives him fevers which makes him feel achy, it makes him pukey and this time it made him poopy too. Poor guy. We can leave whenever he starts eating and drinking...and keeping it down. So that's what's up here, Love Jed and Kristin

Hey all. He is asleep, which is good because when he wakes up he throws up...nice. Poor guy. He feels yucky. There is a 3 hr chemo tonight and a 3 hr chemo tomorrow morning that's it for this stay. He has a low grade fever but this med causes fevers so I'm not very worried. They did cultures anyway, just in case. So we are doing our usual, he sleeps and throws up, I knit, take it apart and knit more and I hold the puke bucket. I hope we get out of here this weekend.
Love Jed and Kristin

Jed Tricks

Hi, we are in for chemo, room 7261. Last night was uneventful...I like that! I'll try to keep you up to date. Hopefully this is a short stay..cross your fingers.
A special hi to Danny's mom, Jean.....we are thinking of you :).
Love J & K

Hi, just a quick update because I have been lazy about it! Jed's "room makeover" is finished. It looks nice. They painted, got him a queen size bed & put the dresser together that we got him months ago! Mommo has ordered a bed set that is Penn State and Danny is getting him a TV stand and another cabinet for storage. Savannah and I are going to paint the Penn State logo on 1 wall. It was very nice of them to come in and paint & I really thought a queen size bed would never fit in there but it does!. I found a bookcase headboard so Danny & I will get that soon. It is so much nicer now! We are SLOWLY putting his stuff back into the room! So, lets see what else? Well, Saturday Jed and I shopped for father's day. He & Savannah got Danny some shorts and a T-shirt. We also got him a new phone, his was slowly shutting down! We bought some picture frames for Jed's new room and some hooks to hang up his hats & stuff. Yesterday we had breakfast with Hop, Mommo, Livie, Adam & Tiersa for father's day. Jed went to his Dad's for a few hours and Dan & I rode up the new casino..YUCK! They only have slots and the whole place was full of smoke...they can smoke everywhere in there it smelled SO bad! We had a drink, lost $20 and left! The ride was wonderful though! I haven't been on the back of Dan's bike in a while, it was great I could just look at stuff & talk! It was a nice weekend. Tomorrow we go back to Hershey, the plan is to stay a few days for chemo..we'll see. We still have reservations for the beach from the 25th to the 30th but I think that might be a problem because after this chemo he has to get blood counts at least 2x a week & Jed will not get blood work done ANYWHERE else but Hershey! Also he has to have a shot everyday to bring up his counts and it can give him bone pain. So we'll see. I guess that's it. I have to go get some stuff done so we can get DJ at 10:30 & he & Jed can spend some time together before tomorrow.
ok, I'll let ya'll know what's happening. Love J & K

Hi, we are home. His ANC is 300 and it needs to be the magic number..750. So we will try again next week. Now we just have to try to figure out how to keep the room make over a secret! I don't know how that's gonna play out. Jed is tired but ok. His mood has improved over the last couple of hours. He was just miserable when they told us to go home. We went to the grocery store for steak and ingredients for ice cream. He picked at his steak and is now making ice cream & seems a little happier. Our beach trip is looking a little less likely but I'm still holding out hope! I did like absolutely nothing today, I didn't even drive, dad did, but I am tired! Maybe I need ice cream! Love Jed & Kristin

My crappy phone video of Tom Petty!

Really bad video but OMG! Savannah says I'm a dork..to bad!

You can hear everyone singing along, & the guitar..oh my. Yup I'm a dork

Hi All! Hope everyone had a great weekend. Is it hot or what! Holy Moly! Jed slept alot on Friday but by Saturday he was a little better & went to his dad's for a few hours. Sunday we took him to Grace & Jim's to swim. He swam ALL day! ..& ate!
Danny & I went to VA to see Tom Petty!!!!!!!! It was my birthday gift from Danny...row 4 center! So very awesome! He was standing RIGHT in front of me!!!! Oh my. I so love Tom Petty! Jed spent Sunday night at Mommo & Hop's and after breakfast at "The Pride" with Hop, Mommo brought him to Grace's & we met them there to swim. Such a great summer weekend. Jed is feeling ok right now, kinda tired & not too happy to be going into the hospital tomorrow but who could blame him. If his counts are high enough we will stay a few days for chemo. Wednesday the design people will be here to paint his room, they said they will be finished & have it all set up by Friday! I can't wait to see Jed's face. I actually have his room just about empty!
Ok, so everybody cross their fingers, we made reservations at the beach for the 25th to the 30th. Danny has off and Savannah is going to try to get off so we ALL might go! As long as nothing goes haywire we are set! YEA!!!!!
I'll let ya'll know what happens tomorrow.
Love Jed and Kristin

Hey. Jed is snoozing away in my bed! He went to Grace & Jim's this morning about 10:30 to spend the day and swim but he was back here before 1pm. He was throwing up and looks very pale. His counts are pretty good though..well, his white count is not great, it's 1. His hmg, which I was worried about has gone up since Tuesday. I know all this because I drug him to clinic for blood work yesterday. Oh my this place was NOT the place to be yesterday morning! Saying he was angry is a major understatement. He refused to go, kept saying " I feel fine, I will not go!". Well I guess I should say he was yelling......very loudly. So after I threatened to take away anything with a screen for a few days he stomped out to the car. When I hurried out behind him I kicked the back gate to push it open and a screw sticking out on the bottom went right into my toe...hurt. (was that my punishment for being mean to the sick kid?!) Needless to say when his counts came back and he didn't need any blood I got a great big "Told ya so"! I just kinda thought he looked weird, I can't even describe it, he just looks "not right". Of course when we got the counts back and he was fine I felt much better......but now he's feeling yucky. I am hoping he is just tired.
Today was Savannah's last day of school. she had a half day and then came home to take a nap. She just left..not a happy camper, I asked her to go to the store and get ginger ale and some other stuff. She was stomping around & said, " I don't want to go to the store". I said, "well I don't want to pay your car insurance but I do". So between yesterday and today I am making huge points with my kids! Oh well.
On a bright note Jed's room is almost empty! Unreal! His bed, desk, a shelf and a toy box are still in there. Grace is taking the toy box thing for Jase & the shelf goes in the basement. The desk will have to stay in the room, they can just cover it. The bed has to stay until Tuesday. If his counts are too low to be admitted I'm not sure what we will do! I can't wait for him to see his new room. He is getting a bigger bed and some other furniture. This whole thing is just too cool! Again, I have to thank Amy Dietz! DJ dropped off Jed's stuff from his desk today. He also brought Jed a memory book from this year. The Dietz family put a note to him in the well wishes spot! SO nice! Thanks guys!
In the process of emptying Jed's room I also had to slightly organize the other room to store his stuff. Believe me when I say slightly! I have a big pile of stuff for donation. I will call Amy so she can take it to her church. Lots of little toys & games..all new! There was just so much stuff in there! I guess that's it. I thought the kids & I would go out to eat for the last day of school...we always do, but Jed is sick and Savannah is going out....that saves a lot of money, I think I'll have Captain crunch!
Dan and I are supposed to go to VA to see Tom Petty on Sunday! It's my birthday gift from him. the concert is Sunday night & we are staying until Monday.....well that's the way it's supposed to happen..we will just see how it all plays out!
So that's all that's going on here. I hope Jed is just worn out & will fell better after some sleep.
Love Jed and Kristin
My roses on the side of the house are going crazy! I got lucky this year!

Hi everyone. Jed got his spinal tap with no problems. His back is a little sore today and he is tired but other than that he is doing well. His blood counts look good, except for his hemoglobin, it's right on the line. Have to keep an eye on that. I will start packing up his room tomorrow. I can't wait to see the results of Jed's room make over!
I forgot to mention that last Saturday he went to my mom's and learned how to make her famous spaghetti sauce. Of course he is telling everyone how he made it "just a little better"! Monday evening Savannah and I went out..I had to buy a bathing suit..YUCK! Somehow I lost my old one (the only one I had) so I was forced to try on bathing suits..fun fun. Jed had eaten dinner with Grace but when we got home he was waiting for me to start the grill (AT 8PM) because he had been marinading chicken. He would not tell us what it was soaking in but when it turned out very good he started naming off all these different spices and 2 different salad dressings~ It really was good but I am hoping he was exaggerating when he named all the stuff he soaked it in!
School ends on Friday...not that that effects Jed! I am waiting for word from the ED center about Jed's summer tutoring. Amanda, the teacher that was tutoring him, had 2 back surgeries. She is healing and wants to tutor Jed over the summer so he will be ready for school in the fall. I am hoping he can start at least half day. I know everyone with the school is busy right now because it's the end of the year but all they really have to do is say "ok, Amanda can tutor Jed". I would think it's not that big of a deal, he had a tutor last summer. I hope to hear from them soon. When I set up his tutoring this past fall the principal suggested withdrawing him from school until he was ready to come back and pursuing home schooling on my own...HA I can barely add! Thank goodness Amanda volunteered to take it over, we are hoping she can come back this summer. Both of my kids have had her as a teacher and really love her. So we'll see what happens.
Savannah and Cassie are off to the beach on Monday. They are staying with relatives...not mine (Nana & Pappaw's). Rehoboth is much calmer during senior week than Ocean City and Savannah is much smarter than I was at that age so I know she will be fine. They'll have a blast.
I want to take Jed to the beach (now that I have a bathing suit) but trying to find a week that we are fairly sure will work is next to impossible. I am looking at maybe a long weekend but that is more expensive than a whole week in a condo! I will keep looking though! We ARE going this summer even if it's just for a couple of days. Don't laugh if I'm still saying that in October! Anyway, summer is starting...YEA! Everything seems much better in the sun! I guess I better go do more laundry...why is there always MORE laundry?! & why am I the only one awake in my house at 6:30 in the evening? Everyone is napping...not me!
Love Jed and Kristin

Hi, just a quick update. Jed's weekend was good. He was a little tired but still did well. Friday he helped me wash the car and my bike and Hop's car. Sunday he helped Mommo babysit Livi. He was busy! We go tomorrow early tomorrow morning for his spinal tap. His cold seems to be gine so I think it will be ok. I'll let ya'll know. Dustin the design guy came by to show us plans for Jed's room. We are very excited! they are going to do the work next Wed-Friday. We should be in the hospital during that time. Can't wait to share the pics. It will be a huge suprise for Jed! They even are getting him a new bed! awesome! Thanks Amy Dietz for putting all this in motion! gotta go love K & J