Hi, surprise we are home!!! He has a white count of .6 so no chemo for Jed this week! We will try again next week..on Friday instead of Tuesday because he leaves for camp on Sunday. So this way he will just have to leave camp a day early. He was ok with that. So that's where that is for now.
Our friend Janiece at clinic leaves tomorrow for England & Scotland....enjoy, you deserve it!
Jed has school tomorrow and if he feels good after that maybe we will go swimming. I know tough life... right!
When Jed goes in for chemo next Friday it will be the beginning of the last 6 week cycle of this phase. I hate to actually write this but he only has 2 scheduled inpatient chemos left!!!!!!!!!!!!!! I cannot even begin to believe it!
Whenever this 6 week cycle is finished he will start on maintenance!!!!!!! That means weekly visits to clinic and still lots of meds but no inpatient stays unless he gets a fever. I am blown away at how far he has come! BUT I am not getting all excited..just a little!
Gotta go, Love Jed and Kristin
Tuesday, July 29, 2008
Monday, July 28, 2008
Hi all. So yesterday Jed and Savannah went to their little brother's birthday party and had fun. While Jed was gone Dan and I went for a ride. The weather was wonderful when we left. Not too hot, nice easy breeze. I always just follow Danny & we just randomly ride. The first little road he chose of course dead ended at a gravel road that went right and left, as we got to the turn the first thing I noticed was that the road was gravel...both ways..oh yeah love to ride on gravel ..not. The second thing I noticed was the 3 dogs in the yard barking and 2 of the dogs were running toward us. Danny turned left and the road turned out to be a driveway..oh yipee, now I had to turn around and go back. Dan went first and of course the dogs chased me! One of the dogs just ran forever I thought he would never stop, I kept waiting for him to grab my calf. He finally gave up! We rode for awhile more and again ended up on another gravel road. I know all these roads from years of riding my dirt bike all over them. I thought they had paved this road recently but they only paved the beginning and the end! The whole center was still gravel..very tricky of them. As we rode on it got progressively darker and lightning started. I was singing one of my little ditties that I made up for times when I am unsure of my riding abilities...Gravel, rain, lightning, I can do it all..yes I can, better than a man! Ok so I am singing as the lightning gets worse and the the sky turns black..really! Just as we got to the end of this road and onto blacktop it started to rain..not too hard, not a big deal I can handle rain. As we went around the corner and headed down the hill into Felton the rain got heavier. Dan started to pull over to put on his rain gear ( I don't have any) :) I rode right by him and yelled "GO TO ADAM'S". His house was down the hill and part way up the next one..not too far. I was worried that the road was slippery so I was trying to be very careful but as we got to the bottom of the hill I just jumped on it to hurry up the next hill to Adam's. Before I went 10 feet the wind was so bad I couldn't see anything, it was blowing my bike across the road! I swear it was like riding through a hurricane. I have NEVER seen a storm like this. I was totally focused on getting to my brother's driveway, I almost missed it because I couldn't see anything. We made it into the driveway, didn't even have time to punch in the code for the garage door we just ran to the side door and stood under the overhang...there was no one home!!! It rained, the wind blew and the lightning was wild and then it hailed...huge hail. It lasted over 15 minutes. We were pressed up against the door..until Danny realized it's a metal door! Adam, Tiersa & Livi finally came home and dried us off and fed us pie...all better! The only damage was one of my mirrors was broken and I have a bruise on my head from a big hail ball. Livi-Mac slept through the whole storm in her car seat! It was crazy. I really have never seen a storm like that! Danny said later,"wow, I was scared to try to turn into the driveway"..HELLO.. so was I, I kept thinking if I fell turning in he would be stuck out in the road. He told me later that he would have just bumped right over me, I guess it's every man for themselves in a storm!!!!! Ok, so that's my big drama story for the weekend.
Today Mom, Savannah, Jed and I went to see Ma-B. She looks good and is still mentally pretty sharp but she can barely get around. She is so small now. She has always been short, but now she is just little. Jed towers over her! Uncle Bill is taking very good care of her, if not for him and Beth she would be in a home...which she would hate...who wouldn't! It was good to see her.
Jed is having school right now. He spent the afternoon making his birthday list!!!!!!! It's at the end of September!!! well, he's ready now! I got the whole front and side of the house weeded and moved the 2 rose bushes I wanted to move. I got stuff accomplished! I made Danny tacos and the laundry is almost finished~!!!! Go Me!
Tomorrow we head to Hershey for a 3-4 day admit. He gets high dose Ara-C this time. This crud gives him fevers. I hope it goes smoothly. He is excited about camp coming up on the third. I am excited for him, but a tad stressed about it, I won't let him know that though! Ok I guess that's it, now that I have written a book! Oh yeah I also got my leave from work approved so I will be off until Jan 22nd.!!!!! Yea...but there is the lack of a paycheck thing!!! I try not to think about that! Poor Danny!
Gotta go, Love Jed and Kristin
Today Mom, Savannah, Jed and I went to see Ma-B. She looks good and is still mentally pretty sharp but she can barely get around. She is so small now. She has always been short, but now she is just little. Jed towers over her! Uncle Bill is taking very good care of her, if not for him and Beth she would be in a home...which she would hate...who wouldn't! It was good to see her.
Jed is having school right now. He spent the afternoon making his birthday list!!!!!!! It's at the end of September!!! well, he's ready now! I got the whole front and side of the house weeded and moved the 2 rose bushes I wanted to move. I got stuff accomplished! I made Danny tacos and the laundry is almost finished~!!!! Go Me!
Tomorrow we head to Hershey for a 3-4 day admit. He gets high dose Ara-C this time. This crud gives him fevers. I hope it goes smoothly. He is excited about camp coming up on the third. I am excited for him, but a tad stressed about it, I won't let him know that though! Ok I guess that's it, now that I have written a book! Oh yeah I also got my leave from work approved so I will be off until Jan 22nd.!!!!! Yea...but there is the lack of a paycheck thing!!! I try not to think about that! Poor Danny!
Gotta go, Love Jed and Kristin
Sunday, July 27, 2008
Hi. Jed is feeling very good. He spent yesterday afternoon at his Nana's and Pappaw's riding his 4-wheeler. He has not done that in a while. They stopped at the new ice cream shop in Red Lion on the way home..he was in heaven! Hop put his ceiling fan up in his room. We shopped for it on Friday. Of course the first fan Jed picked out was $120, after much searching and much discussion we settled on a $50 fan! It is perfect, black and silver and not too big. Today he is going to his little brother's birthday party. Savannah will meet him there after she gets finished at work and she will bring him home. On Friday when we shopped for the gift he was so intense, he wanted just the right one! He ended up with some kind of Lego star wars thing. He bought wrapping paper and a card and wrapped it all and signed his and Savannah's names! So he is set and ready to go, I even got instructions to wake him before 10am! I think I'll get him an alarm clock so he can wake himself up whenever he wants!
Maybe I'll ride my motorcycle today :)
Love Jed and Kristin
Maybe I'll ride my motorcycle today :)
Love Jed and Kristin
Friday, July 25, 2008
Quickie update, Jed seems a little better today. He had school with no complaint, we went to see his cousin Livi-Mac at Mommo's house and we shopped for his little brother's birthday gift. Jed & Savannah are going over there on Sunday for the party. I hate to jump up and say yea he's feeling great but he is pretty good right now! He looks better too, his color is not as chalky.
Ok so for the BIG news...Jed is going to be the Grand Marshal for the Bike Night parade in York on September 26th! Is that crazy or what??!!! We are all so excited. He will ride with Danny and Dad and I will ride too & maybe Uncle Jack! We get to lead the parade!!!!!! So cool, the Harley employees will follow us...hum, that means we ride in front of the bosses..nice. Gotta love it. Thanks to the really sweet, nice guy that works maintenance...he runs the parade. I am searching my brain for his name...it's in there but I can't seem to find it right now. Anyway he is awesome and oh so nice. What a great birthday gift for Jed! We are supposed to do a press thing in front of the plant in a couple of weeks...weird, but Jed thinks that's cool too! So I'll keep ya'll posted on the details of the JED Night Parade!
Gotta go
Love J & K
Ok so for the BIG news...Jed is going to be the Grand Marshal for the Bike Night parade in York on September 26th! Is that crazy or what??!!! We are all so excited. He will ride with Danny and Dad and I will ride too & maybe Uncle Jack! We get to lead the parade!!!!!! So cool, the Harley employees will follow us...hum, that means we ride in front of the bosses..nice. Gotta love it. Thanks to the really sweet, nice guy that works maintenance...he runs the parade. I am searching my brain for his name...it's in there but I can't seem to find it right now. Anyway he is awesome and oh so nice. What a great birthday gift for Jed! We are supposed to do a press thing in front of the plant in a couple of weeks...weird, but Jed thinks that's cool too! So I'll keep ya'll posted on the details of the JED Night Parade!
Gotta go
Love J & K
Thursday, July 24, 2008
Hey. Well as of now I should be finished with work for awhile again. Danny is dropping off my leave papers in the morning. I can't say that I miss work but I did almost start to feel that things were back to "normal", well, except for the anxiety, stress and guilt leaving Jed made me feel! It was VERY nice to get a couple of pay checks! I will miss some of the people...they know who they are! I was amazed how nothing really changes. There are still the same old petty complaints, the frustration with the people that spend all their time trying NOT to work, who cleans up, who restocks, all that stupid stuff. When you are there everyday it is so easy to fall into it, but being away makes me realize all that stuff is not worth the energy and attention. Just do your job and go home. So like I said I'll miss the "normalcy" going to work everyday gives me, and a few of the people but that's it.
Jed is doing ok. He woke up throwing up yesterday but he still had school and was ok by the time we got home. He seems to be a bit manic the last few days. He has been running around making the beds, counting money..(not mine!) organizing his stuff and being very critical & correcting. I hope that eases up I know it exhausts him. He helped me make cookies last night. Of course I did a bad mom thing, I left the step stool down and he tripped over it with a plate of cookies. Poor guy. He fell on his knee, it has a nice bruise now. I felt so bad and he was apologizing for dropping the cookies! Oh my did I feel bad! He has school again tomorrow morning, I am waiting for him to start with the sad, sick, over the top act he gives trying to get me to call the teacher and cancel!
Danny just left to take the dog to the vet, neither of them was happy. Bandit didn't want to go and Danny did not want to take him. He said that since he was the one that had to keep working and I am not doing anything I should take the dog to the vet. Well, maybe he's right but I just was not going to. I'm sure I would have but just not now. More blood test and pills and just...more. Oh well it all works out..right?!!
Love Jed and Kristin
Gotta go. Love Jed and Kristin
Jed is doing ok. He woke up throwing up yesterday but he still had school and was ok by the time we got home. He seems to be a bit manic the last few days. He has been running around making the beds, counting money..(not mine!) organizing his stuff and being very critical & correcting. I hope that eases up I know it exhausts him. He helped me make cookies last night. Of course I did a bad mom thing, I left the step stool down and he tripped over it with a plate of cookies. Poor guy. He fell on his knee, it has a nice bruise now. I felt so bad and he was apologizing for dropping the cookies! Oh my did I feel bad! He has school again tomorrow morning, I am waiting for him to start with the sad, sick, over the top act he gives trying to get me to call the teacher and cancel!
Danny just left to take the dog to the vet, neither of them was happy. Bandit didn't want to go and Danny did not want to take him. He said that since he was the one that had to keep working and I am not doing anything I should take the dog to the vet. Well, maybe he's right but I just was not going to. I'm sure I would have but just not now. More blood test and pills and just...more. Oh well it all works out..right?!!
Love Jed and Kristin
Gotta go. Love Jed and Kristin
Tuesday, July 22, 2008
Hey! Spinal tap day is over!!! Yeaaa. He did great. The way last week went, I was really worried but he has rallied the last 2 days. Sunday went well. He woke up throwing-up but as the day went on he seemed to have more energy. I stayed home yesterday because Mom had a dr.'s appointment. He felt so good we went swimming for a few hours. He also had school for more than 2hrs last evening. His new tutor is Mrs. Washco. She will also be his 5th grade teacher. he seems to like her and he really does need to get caught up. I hope he doesn't have too much trouble.
He is upstairs now, hanging out. He is very tired but not sick or anything. So back to work for me tomorrow. I have 2 more work days to get in before I can go on leave again. So that's all for now.
Note to Trish: yes you are correct, make lemonade out of lemons! Thanks for the reminder!!! But I still do no want to drive to Delaware!
A special hi to LV and her beautiful Mom, hope you are both doing well.
Love Jed and Kristin
He is upstairs now, hanging out. He is very tired but not sick or anything. So back to work for me tomorrow. I have 2 more work days to get in before I can go on leave again. So that's all for now.
Note to Trish: yes you are correct, make lemonade out of lemons! Thanks for the reminder!!! But I still do no want to drive to Delaware!
A special hi to LV and her beautiful Mom, hope you are both doing well.
Love Jed and Kristin
Sunday, July 20, 2008
Hi ya'll. Sorry I have been lax but there is not much happening here. I am working and mom is here everyday with Jed. He has not be feeling very well. Not eating much of anything either. This week's chemo really got him. He did get to go see Batman on Friday night, he and Danny had a guys night out...5 Guys for burgers and fries and a movie! Jed ate some fries, that's about it.
Savannah is home from the beach and back to work....she has to pay for the speeding ticket she got while taking her friend to the medical clinic. The really wonderful thing is that in Delaware if you get a ticket and you are under 18 it is mandatory for your parent to appear in court...IN DELAWARE!!!!!!!! I am so thrilled with that I can't even put it into words. I plan on postponing it until the cows come home.
Work sucks. I wish I could say it was good to go blah blah blah but no..it has been hard. Not the work per say I just don't like leaving Jed. Mom is here so I know he's fine but I just don't like it. besides the fact that it's hot and I always need so much sleep when I'm working and right now I am not getting it. Today I did sleep in til almost 9 ..holy moly! So I should feel great right...yeah ok. It just seems like all of a sudden I have stuff to do and since I'm working I don't want to do it! My flowers need to be weeded, BAD, I have some rose bushes that need to be moved, I need to find a way to get rid of these F'N beetles! They are everywhere and eating all my stuff! Jed's tomatoes are doing good, a couple got some weird spots on them but the others are good. His peppers are rockin', but I have managed to kill his cilantro, basil, Rosemary...etc. So I need to replace those so he will have some to dry for the winter. I know these are not major issues but they are always in the back of my head! At least with mom here my house is clean!
Jed is so weak, he looks very fragile right now. He is still doing the steps well, so that's good, if you ever saw our steps you would know why I'm saying that!
Danny is planning a trip to CA to see his family. He is going to see his son and his kids. His sister lives in the same town as his son, so he will see her too. His mom is up above Napa, in Clearlake, he is going to see her too. She has been diagnosed with lymphoma and has decided not to get chemo. She feels great, she is in her mid 70's. She and her husband camp and fish all the time. So he will hang out with family and visit. I think he is going to go the 2nd week in August for a week or so. It will be good for him to get away from here for awhile. He hasn't seen David, his son, in quite awhile. I was going to take Jed and go back to the beach for a few days but with his treatment schedule I don't think I can get it in and he is supposed to go to camp the 1st week of August. I know he wants to go but I am not sure. I am starting to really worry about that, even though his nurses will be there and Drs are around etc. I just don't know. I hope he goes because he will have a great time but I also hope he decides not to go...less stress for me! selfish I know.
Well I have to go finish my deviled eggs, my gram and her sister are coming to my brother's for lunch. So I get to go see my baby.
I guess that's it. Jed has a spinal tap on Tuesday and Wednesday should be my last day at work. Thank goodness, the stress of leaving him everyday is exhausting me and I don't think he is real happy with it either but he has not said a word!
Gotta go, Love Jed and Kristin
Savannah is home from the beach and back to work....she has to pay for the speeding ticket she got while taking her friend to the medical clinic. The really wonderful thing is that in Delaware if you get a ticket and you are under 18 it is mandatory for your parent to appear in court...IN DELAWARE!!!!!!!! I am so thrilled with that I can't even put it into words. I plan on postponing it until the cows come home.
Work sucks. I wish I could say it was good to go blah blah blah but no..it has been hard. Not the work per say I just don't like leaving Jed. Mom is here so I know he's fine but I just don't like it. besides the fact that it's hot and I always need so much sleep when I'm working and right now I am not getting it. Today I did sleep in til almost 9 ..holy moly! So I should feel great right...yeah ok. It just seems like all of a sudden I have stuff to do and since I'm working I don't want to do it! My flowers need to be weeded, BAD, I have some rose bushes that need to be moved, I need to find a way to get rid of these F'N beetles! They are everywhere and eating all my stuff! Jed's tomatoes are doing good, a couple got some weird spots on them but the others are good. His peppers are rockin', but I have managed to kill his cilantro, basil, Rosemary...etc. So I need to replace those so he will have some to dry for the winter. I know these are not major issues but they are always in the back of my head! At least with mom here my house is clean!
Jed is so weak, he looks very fragile right now. He is still doing the steps well, so that's good, if you ever saw our steps you would know why I'm saying that!
Danny is planning a trip to CA to see his family. He is going to see his son and his kids. His sister lives in the same town as his son, so he will see her too. His mom is up above Napa, in Clearlake, he is going to see her too. She has been diagnosed with lymphoma and has decided not to get chemo. She feels great, she is in her mid 70's. She and her husband camp and fish all the time. So he will hang out with family and visit. I think he is going to go the 2nd week in August for a week or so. It will be good for him to get away from here for awhile. He hasn't seen David, his son, in quite awhile. I was going to take Jed and go back to the beach for a few days but with his treatment schedule I don't think I can get it in and he is supposed to go to camp the 1st week of August. I know he wants to go but I am not sure. I am starting to really worry about that, even though his nurses will be there and Drs are around etc. I just don't know. I hope he goes because he will have a great time but I also hope he decides not to go...less stress for me! selfish I know.
Well I have to go finish my deviled eggs, my gram and her sister are coming to my brother's for lunch. So I get to go see my baby.
I guess that's it. Jed has a spinal tap on Tuesday and Wednesday should be my last day at work. Thank goodness, the stress of leaving him everyday is exhausting me and I don't think he is real happy with it either but he has not said a word!
Gotta go, Love Jed and Kristin
Tuesday, July 15, 2008
Hi, we are home and he got his chemo. We got there at 8:30 am and left at 6:30pm, very long day! We really thought his counts would be low but they were good, his AnC was 1400! He was not a happy camper. He didn't feel well and the thought of getting stuff that made him feel worse. He did ok though and he slept alot. He has to be pre-hydrated for this med (cytoxin) the problem was he was sooo dehydrated they kept dumping fluids in him and he was not peeing at all, they went ahead and gave him the other 2 drugs and kept hydrating him for the cytoxin. It was 2pm and he still had not gotten enough fluids to start so the Dr. decide to go ahead and start the cytoxin because these drugs need to be given the same day. He finally became hydrated halfway through the post-hydration of the cytoxin! This drug runs for an hour and must be flushed out with 3 hours of post hydration! So we left about 6:30 pm. Poor nurse Susanne had to hang out with us! Now the task is to keep him drinking because if the cytoxin sits in his bladder it can damage it. So that's where things are as of now. Ok, I gotta go calculate how many weight watcher points I ate today because I forgot to count them!!!!! oops
Love Jed and Kristin
Love Jed and Kristin
Monday, July 14, 2008
Hey, not much new. Yesterday I put the cabinet and TV stand together in Jed's room. We are slowly getting all his stuff put back in. I also hooked up his computer. I have to get Uncle Adam to come over and put him on the web. Jed and Danny grilled dinner, chicken, peppers, mashed potatoes YUM! Today I went to work...oh joy. Savannah left for the beach and Jed made jello cupcakes with mommo. Very yummy! Of course I am trying so hard to not eat them all.
He is feeling ok, not great but ok. He has the cold I brought home from work last week. Tomorrow is an all day chemo. I don't think he will get it. He looks pretty wrung out. I think he should wait a week but we'll see what the Doc says.
Mom spent the day off and on the phone trying to get Jed's tutoring started. I started working on this before the end of May, July is halfway over and it is still not set up. I just don't understand how freakin hard it could be. A lot of the other parents of kids at clinic say their school is always in contact with them, the principal, teachers even administration....HA except for Amanda, Mrs. Kirby and a few others I have not heard a word since last fall. At Christmas he got cards from many in the school, which was great, we decorated the whole kitchen with them, but other than that, nothing. I don't expect constant contact but an occasional call or email from someone involved in his education would be great. Oh, well right now all I want is for him to be tutored and ready to start 5th grade in the fall. He might not be able to go for more than a couple of hours a day but I really want him to go as much as he can when school starts.
Anyway I'll let ya'll know what happens tomorrow with chemo.
Love Jed and Kristin
He is feeling ok, not great but ok. He has the cold I brought home from work last week. Tomorrow is an all day chemo. I don't think he will get it. He looks pretty wrung out. I think he should wait a week but we'll see what the Doc says.
Mom spent the day off and on the phone trying to get Jed's tutoring started. I started working on this before the end of May, July is halfway over and it is still not set up. I just don't understand how freakin hard it could be. A lot of the other parents of kids at clinic say their school is always in contact with them, the principal, teachers even administration....HA except for Amanda, Mrs. Kirby and a few others I have not heard a word since last fall. At Christmas he got cards from many in the school, which was great, we decorated the whole kitchen with them, but other than that, nothing. I don't expect constant contact but an occasional call or email from someone involved in his education would be great. Oh, well right now all I want is for him to be tutored and ready to start 5th grade in the fall. He might not be able to go for more than a couple of hours a day but I really want him to go as much as he can when school starts.
Anyway I'll let ya'll know what happens tomorrow with chemo.
Love Jed and Kristin
Saturday, July 12, 2008
Thursday, July 10, 2008
Hi all, I tried to update last night but of course the hotspot I had in the room only lasted about 5 minutes. Anyway, update: Jed is doing great. I think I am going to have to have my mom come stay with him for all his chemos. The last 2 days I call here to check on him and he is making a Tye-dye shirt, eating hotdogs, having pasta, playing bingo etc! No puking, not sleeping all day...none of the usual crud! Mommo must be magic!!!!! So maybe we can get out of here before the end of the weekend, it all depends on his methotrexate levels. I hope we are out by Sunday at the latest so I don't have to run back and forth and mommo doesn't have to either.
Our wonderful friend Trish came to visit last night she brought Jed candy and Gatorade. We miss the whole Jackson Smith family so much it was great to see her. The strength and love they give to all of us after they have suffered such a loss is amazing. We are lucky to call them our friends.
Ok, about me...because you know it's all about me...right Trish?! Anyway, my day starts out with my boss giving me a job I used to not mind doing, even though I haven't done it in a year...I was happy for a whole 5 seconds before I realized the tires I used to mount have DOUBLED in size along with the VERY heavy wheels they go on. So instead of mounting 180 tires and finishing early I mounted not even 100 and worked until almost 3pm (we leave at 3:15). The whole day was a struggle and I felt pathetic when I had to ask the guy next to me for help, thank goodness it was Ralph and not one of the morons...Yea Ralph! I have a cold...I mentioned that the other day, I know that crappy place I work in gave it to me..but I must have taken too much cold medicine because my heart started to pound really hard and I got dizzy. I thought, oh great not only can I not mount these tires I am going to pass out doing it. I didn't...thank goodness. I called to cancel a doctors appointment I had today at 3pm because I had to take the car to get brakes, the office called me back...I didn't have an appointment today, it's next week...nice, am I on the ball or what! We went after work to pick up the car, a very old guy in the car place said to me " I have to tell you, you are a very attractive lady", ok so the thought was nice but..lady? Yea that makes me feel real young and the guy had long finger nails...a freak out point for me and to make it all better when we left instead of Danny saying "see baby, other people think your pretty too" he says "wow that guy must really be lonely" Great, now I feel really hot!! Ok so I leave there and head home ( the hospital) I have to stop at KFC for king Jed's daily order and I go to pay and he says "oh sorry we can only take cash today the credit card machine is down......oh great..I have no money! BUT I actually found money in my bag....a miracle. I told the guy I would have not been well received at the hospital without Jed's food & he says " hey how about a free soda" Wow, cool, sure I'll take a free soda! He hands it to me, it's so big it's like a jug with a handle, I take it from him and the handle breaks....all the soda is in my lap!!!! Yup I had to walk from the parking lot all the way up to the 7th floor at the very end of the west wing looking like I peed myself...A LOT! I told my mom I was sticky but she didn't believe me until she touched me & said "eeue, your sticky" I KNOW! I tried to tell you! So I have had a shower, some coffee from the volunteer room and a bag of peanut M&M's Trish brought for Jed...I feel better now. & that's what is important ...right?!
Welp, back to the bat cave for the night and up again tomorrow for another great day at Harley Davidson....I get to mount tires AGAIN tomorrow...whooo-hooo! And I am not even getting the simple pleasure of riding my bike to and from work because I am too tired to battle the highway and turnpike traffic without air condition ( I am lazy).
Ok, gonna go now... Jed is watching cartoons, is there anything else on???
Love Jed and Kristin
Our wonderful friend Trish came to visit last night she brought Jed candy and Gatorade. We miss the whole Jackson Smith family so much it was great to see her. The strength and love they give to all of us after they have suffered such a loss is amazing. We are lucky to call them our friends.
Ok, about me...because you know it's all about me...right Trish?! Anyway, my day starts out with my boss giving me a job I used to not mind doing, even though I haven't done it in a year...I was happy for a whole 5 seconds before I realized the tires I used to mount have DOUBLED in size along with the VERY heavy wheels they go on. So instead of mounting 180 tires and finishing early I mounted not even 100 and worked until almost 3pm (we leave at 3:15). The whole day was a struggle and I felt pathetic when I had to ask the guy next to me for help, thank goodness it was Ralph and not one of the morons...Yea Ralph! I have a cold...I mentioned that the other day, I know that crappy place I work in gave it to me..but I must have taken too much cold medicine because my heart started to pound really hard and I got dizzy. I thought, oh great not only can I not mount these tires I am going to pass out doing it. I didn't...thank goodness. I called to cancel a doctors appointment I had today at 3pm because I had to take the car to get brakes, the office called me back...I didn't have an appointment today, it's next week...nice, am I on the ball or what! We went after work to pick up the car, a very old guy in the car place said to me " I have to tell you, you are a very attractive lady", ok so the thought was nice but..lady? Yea that makes me feel real young and the guy had long finger nails...a freak out point for me and to make it all better when we left instead of Danny saying "see baby, other people think your pretty too" he says "wow that guy must really be lonely" Great, now I feel really hot!! Ok so I leave there and head home ( the hospital) I have to stop at KFC for king Jed's daily order and I go to pay and he says "oh sorry we can only take cash today the credit card machine is down......oh great..I have no money! BUT I actually found money in my bag....a miracle. I told the guy I would have not been well received at the hospital without Jed's food & he says " hey how about a free soda" Wow, cool, sure I'll take a free soda! He hands it to me, it's so big it's like a jug with a handle, I take it from him and the handle breaks....all the soda is in my lap!!!! Yup I had to walk from the parking lot all the way up to the 7th floor at the very end of the west wing looking like I peed myself...A LOT! I told my mom I was sticky but she didn't believe me until she touched me & said "eeue, your sticky" I KNOW! I tried to tell you! So I have had a shower, some coffee from the volunteer room and a bag of peanut M&M's Trish brought for Jed...I feel better now. & that's what is important ...right?!
Welp, back to the bat cave for the night and up again tomorrow for another great day at Harley Davidson....I get to mount tires AGAIN tomorrow...whooo-hooo! And I am not even getting the simple pleasure of riding my bike to and from work because I am too tired to battle the highway and turnpike traffic without air condition ( I am lazy).
Ok, gonna go now... Jed is watching cartoons, is there anything else on???
Love Jed and Kristin
Tuesday, July 8, 2008
Hi, we are in room 7265. He is asleep already! he didn't have such a great morning, threw-up in the car on the way here. We couldn't find his pink bucket so he had to throw-up in a rite-aid bag...it had a hole, then his nurse, Holly, was not at work, she's sick and then there is the fact that I have to leave everyday at 5:30 am and won't be back until after 4pm. So he has stressed himself out. They treated him like a star in the clinic, gave him a room and a pull out chair, blanket & pillow and turned off the lights so he could rest until his room was ready up here! I am glad he is sleeping now!
I went to work yesterday and woke up today with a sore throat and stuffed up nose...love that place.
That's all from here, he has started his pre-hydration and should start chemo arount 11pm or so.
Love J & K
I SOOOO miss the beach!
I went to work yesterday and woke up today with a sore throat and stuffed up nose...love that place.
That's all from here, he has started his pre-hydration and should start chemo arount 11pm or so.
Love J & K
I SOOOO miss the beach!
Sunday, July 6, 2008
Hey all. Well tomorrow is the dreaded day.....back to work. Ya know it's not the going back to work that is stressful it's all the paper work crap and BS they make you go through. I have to work 10 paid days (which will take me almost 3 weeks) then I file all my paper work to get of another 26 weeks. The hope is after that Jed will be on maintenance, that means oral meds and only weekly visits to clinic. The only time we would have to be inpatient is if he gets a fever. But when he was sick last time he spent more time inpatient on maintenance than on the hard core treatment phase (because of illnesses). So I guess we will see. I can take off 26 weeks at a time until next June. That will be 2 years of medical leave, after that I have to go to work full time or else. so we'll see I don't want to get ahead of myself, lets just get through the next 3 weeks with out a major issue. Tuesday he is supposed to be admitted for 3 days of chemo, so I am taking off Tuesday and then every morning Mom will come up to the hospital at 5:30 am so I can go to work and she will stay until I get back around 4:30 or so. Poor Mommo! I am hoping he will get in and out before the following Monday. We can run on that schedule for 3 days or so, after that it can be major burn out! So we'll just have to see what happens. He is feeling pretty good. Of course he is he has to get chemo again in 2 days...yipee. Anyway, we had a great weekend. Saturday I finished Mom & Dad's room...all painted. Then we babysat Livie from 6-10. She is so funny. Give her some formula and she looks like a drunk! Today we had lunch at Mom's, A & Jack came up and Adam, Tiersa and Livie were there. Danny did all the grilling. It was great. So that's it. I am trying to get stuff done so I won't have a lot to do tomorrow night and Tuesday morning..right!
Gotta go Love Jed and Kristin
Gotta go Love Jed and Kristin
Saturday, July 5, 2008
Thursday, July 3, 2008
Just a quick note, he got blood yesterday, didn't need platelets after all, just 2bags of blood. They made a huge difference. He is pink and has some energy and not crabby! He was at Grace & Jim's today, Mommo & Hop's and then we went to see the fire works. Busy day for the kid! (he did have a nap)! Gotta go tomorrow is day 2 of painting Mommo & Hop's bedroom! It's trim day...whoo-hoo!
Love, Jed and Kristin
I put 2 more pics up
Love, Jed and Kristin
I put 2 more pics up
Jed's "other family"!
002
Originally uploaded by buckley04@verizon.net
Here is Jed with the Dietz clan, minus Mommy Amy, He just gets right in there! They were waiting for the fireworks!
DJ, Jed, Conner, Daddy Dave & Miss Morgan
The 1st!
001
Originally uploaded by buckley04@verizon.net
This my friends is the very first tomato from farmer Jed's deck garden! What a beauty! He gave it to Mommo & Hop.
How pleased does he look?!
Tuesday, July 1, 2008
Hi ya'll! We are home :(. I am not sad to be home I am just sad that I had to leave the beach! It was wonderful, Savannah even showed up on Friday morning! The weather was perfect, we had 1 storm on Monday night and it only lasted about 2hrs. Jed had a good time. He is VERY tired and spent a lot of time sleeping but was always up and ready to go to dinner! He didn't eat much but he liked to go out. His average beach time was about 30 mins a day! He and Dan took lots of naps, went to the movies and played mini golf & watched the dolphins and surfers from our balcony. He wasn't sick, just tired. I wish he had had more energy. Watching other kids run around and play in the water really made it clear how weak he is. Even just a little wave around his ankles made him stagger. All in all he did well and seemed to have a good time. We gave him the option to go home everyday and he always said he wanted to stay, we even stayed an extra day! He liked the milkshakes at Dumser's and of course the Fisher's popcorn. The last night he bought a little kite and he and Dan flew it on the beach for a couple of hours.
It was weird to be down there without Savannah so I was glad someone worked her weekend for her. Of course as soon as she got there it was instant arguing and bickering but hey it didn't feel right without it anyway. Savannah got him to dig for sand crabs, when he saw one he suddenly decided he didn't want to dig for crabs! He headed back to the dry sand after that! I forgot that he has not spent much time at the beach so I had to tell him all the important things like, don't run past people's stuff and kick up sand, don't walk on the blanket, stay out of the rip tide, put sun block Everywhere because, as my gram always says, "your bathing suit WILL ride-up!" He had to know that Fisher's caramel popcorn is way better than Dollies and Dumser's is the only place to eat ice cream. How to pick a crab and don't touch you eyes after you pick a crab, old bay stings, and don't put your stuff too close to the water because the tide will come in and take it away! He thought it was very funny when we witnessed it! So he learned all kinds of important stuff. I just have to make sure he gets down there more often so he can learn all the many more important things you can only learn at the beach!
He really liked to watch the boats, he and Danny were going to ride on the Thriller, a big speed boat, but he was sore and stiff from the go carts so he opted to just watch. I wanted to take him on the Assateague island adventure boat. They teach you how to clam, crab and you look for the ponies. Jed said, "well as long as I don't have to crab, clam or look at ponies I'll go. we didn't go.! He checked out all the rides on the pier, he was not tempted by them, especially after I pointed out all the ones I rode when I was much younger than he is now! Smart boy! He really enjoyed Thrasher's fries, and thought Candy Kitchen was awesome. He digs chocolate covered strawberries! $5 a stick..nice! Each night he walked on the boardwalk a little bit. Monday night I got him to walk from the inlet to 10th street..pretty good! Danny ran back and got the car to come pick him up. Adam called us when we got down there and we we stood in front of the web cam on the boardwalk so we could wave at him,(and other stuff)! Savannah and I walked back to 33rd St. Why does it not seem far when you walk at the beach?!
I took him by the place I stayed every summer when I was a kid. He really like the fact that you could fish off the deck and dock a boat right there too. I think when he is stronger we will go down so he and Danny can go fishing.
He got blood work done on Monday morning. I know he was stressed out about it but it went smoothly, well after we had a huge problem because I thought I forgot his EMLA cream to numb his arms. I called around to all the pharmacies, no one carried it. We finally found it. Danny had "put it away" in a bathroom drawer., he is always "putting things away"! I KNEW I didn't forget it! We went to a place called "Your Doc's In" and everyone there went out of their way to take care of him. They were awesome, got it on the 1st stick. Even the guy that answered the phone was wonderful! It's a great thing to know they are there just in case we need them at some point.
I guess that's about it. We all had a great time, ok, me more than anyone, but they did too! Lots of little Jed quips and comments throughout the week. He really likes to tell you everything he knows...whether he knows it or not. We just all play along! He told me to watch out for a hangover after I drank 2 Mike's lemonades...over 6 hrs! He is always looking out for others. :) Ok, gotta go work on the 2 tons of dirty laundry we hauled back with us. Check out the link to the pictures and watch the slide show. Thanks to my mom and Dad for taking care of the dog and the house so we could go! We head up to Hershey tomorrow for some much needed platelets. He is turning into a big bruise.
Love Jed and Kristin
It was weird to be down there without Savannah so I was glad someone worked her weekend for her. Of course as soon as she got there it was instant arguing and bickering but hey it didn't feel right without it anyway. Savannah got him to dig for sand crabs, when he saw one he suddenly decided he didn't want to dig for crabs! He headed back to the dry sand after that! I forgot that he has not spent much time at the beach so I had to tell him all the important things like, don't run past people's stuff and kick up sand, don't walk on the blanket, stay out of the rip tide, put sun block Everywhere because, as my gram always says, "your bathing suit WILL ride-up!" He had to know that Fisher's caramel popcorn is way better than Dollies and Dumser's is the only place to eat ice cream. How to pick a crab and don't touch you eyes after you pick a crab, old bay stings, and don't put your stuff too close to the water because the tide will come in and take it away! He thought it was very funny when we witnessed it! So he learned all kinds of important stuff. I just have to make sure he gets down there more often so he can learn all the many more important things you can only learn at the beach!
He really liked to watch the boats, he and Danny were going to ride on the Thriller, a big speed boat, but he was sore and stiff from the go carts so he opted to just watch. I wanted to take him on the Assateague island adventure boat. They teach you how to clam, crab and you look for the ponies. Jed said, "well as long as I don't have to crab, clam or look at ponies I'll go. we didn't go.! He checked out all the rides on the pier, he was not tempted by them, especially after I pointed out all the ones I rode when I was much younger than he is now! Smart boy! He really enjoyed Thrasher's fries, and thought Candy Kitchen was awesome. He digs chocolate covered strawberries! $5 a stick..nice! Each night he walked on the boardwalk a little bit. Monday night I got him to walk from the inlet to 10th street..pretty good! Danny ran back and got the car to come pick him up. Adam called us when we got down there and we we stood in front of the web cam on the boardwalk so we could wave at him,(and other stuff)! Savannah and I walked back to 33rd St. Why does it not seem far when you walk at the beach?!
I took him by the place I stayed every summer when I was a kid. He really like the fact that you could fish off the deck and dock a boat right there too. I think when he is stronger we will go down so he and Danny can go fishing.
He got blood work done on Monday morning. I know he was stressed out about it but it went smoothly, well after we had a huge problem because I thought I forgot his EMLA cream to numb his arms. I called around to all the pharmacies, no one carried it. We finally found it. Danny had "put it away" in a bathroom drawer., he is always "putting things away"! I KNEW I didn't forget it! We went to a place called "Your Doc's In" and everyone there went out of their way to take care of him. They were awesome, got it on the 1st stick. Even the guy that answered the phone was wonderful! It's a great thing to know they are there just in case we need them at some point.
I guess that's about it. We all had a great time, ok, me more than anyone, but they did too! Lots of little Jed quips and comments throughout the week. He really likes to tell you everything he knows...whether he knows it or not. We just all play along! He told me to watch out for a hangover after I drank 2 Mike's lemonades...over 6 hrs! He is always looking out for others. :) Ok, gotta go work on the 2 tons of dirty laundry we hauled back with us. Check out the link to the pictures and watch the slide show. Thanks to my mom and Dad for taking care of the dog and the house so we could go! We head up to Hershey tomorrow for some much needed platelets. He is turning into a big bruise.
Love Jed and Kristin
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