Hey. Today Jed, mom and I are going over to my Gram's new apartment to hang pics and get things set up for her. She is moving in 1 week from today!
Jed is doing ok. Yesterday his stomach pain seemed to come back. Grace took us to lunch and he didn't eat anything, just laid in the booth. He went to hang out with my dad at 3pm so I could go to the Dr. and he cried for awhile. Mom brought him home when Danny got home from work. He took a morphine and went up to his room, by the time Savannah and I got home he was feeling better. I think since he had a second dose of vincristine that that could be what triggered this pain again. I hope it will go away. When we went to the GI Dr last week he had had no stomach pain in almost 2 weeks. They want to do a lactose intolerance test.....I think that is pointless. I know he is not lactose intolerant. I am not looking forward to the day they make him take that test.......he is already complaining about it! I think they just have no idea what else to do. My feeling is it is damage from all the chemo, somewhere in there....how's that for a scientific diagnosis! Guess that's why I'm NOT the Dr.
I am painting the hallway and steps. It needs to be painted....not really, I think it's more of an OCD thing with me that anything.
Today is Hop's birthday!!!!!
HAPPY BIRTHDAY HOP!!!!
ok, gotta go paint before we go to Gram's apartment.
Love Jed and Kristin
I wish it was THON again! :)

Oh, I put a link up on the right side to a petition, the petition is headed to DC to help increase funding for Childhood cancers......please take a moment and sign it, pass it on to others too.
THANK YOU!

Coach Joe Paterno Speaks At Penn State's THON 2009

So very cool!!!!!!

Hi, So no chemo again today....well he got 1 drug but not the all day one again. His counts are pretty much the same as last week. We will try again next Tuesday. He seems to feel pretty good, I'll take that!
Tomorrow morning THON is supposed to be on the Today Show!!! 8:20 am.
For those of you that were looking for Savannah on Sunday she lost her voice Saturday night and could not sing......I think it was because she knew I wanted to hear her sing that song in that arena. Oh well. Next year??? I think this past weekend has helped her make up her mind about school. Penn State York this coming year and then on to main campus. She made some new "friends"this weekend...! But really, I don't think she would be able to go elsewhere because she can't stay away from THON! Maybe she will be the first female big cheese for THON! She is talking about being a Gamma Phi too...I guess we will see!
So, let's see, some THON things, Joe Pa...that was so very cool. I will try to post a link to the video of him talking. He was pretty emotional. Savannah got a picture with him! Jed and I had no clue why everyone was screaming ...I mean.. over the top screaming! We were near the back of the stage and we couldn't see what was going on, finally I caught a glimpse of him on the big screen. I texted dad (he was at home) and said I think Joe Pa is here and he said wow cool Joe pa! The place just went nuts! I have never heard the "we are Penn State' cheer as loud as it was when Joe Pa finished his speech...it was crazy. The BJC was closed and they were not letting anyone in because it was so full and every person in there was yelling, "we are...Penn State! The whole weekend was just amazing. Every year it is better. We love our group and all the PSU kids. There were many other stories. I will write them as they come to my head...my brain is very swiss cheese like!
I have to go, our super hot, way cool, awesomely smart, new president is gonna speak...yay!
Yes I am a geek, sorry, ok, no not sorry!
Love Jed and Kristin

Hey, so we are still on our THON high! Jed slept most of the day....surprise! He had school this evening though. He is scheduled to have an all day chemo tomorrow.....depending on his counts, I'll keep ya posted.
Anyone that has THON pics of Jed or Savannah or our group PLEASE send them to me!
cancersuckskdsj@gmail.com

Thanks gotta go to bed!
Love J & K

JOE PA!!!!!!!

JOE PA!!!!!!!
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Yes he really was there!!!!!!

Oh so cute

Oh so cute
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Savannah and Mead

Dancing with the stars!

Dancing with the stars!
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Jed and his Dancing queen Liz!

Momiss and Jed

Momiss and Jed
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Quick update, then off to bed!!!! We are home from THON.....it is unreal how every year keeps getting better!!!!! The grand total this year....get ready......
$7490133.87...No really, that is the total...how crazy is that? We can't say thanks enough to all that work so hard throughout the year to make this possible. The dedication and devotion to THON from the PENN STATE students is amazing. We love all of you and can never say thank you too many times....THANK YOU!
Thanks also to our wonderful friends and family for their donations. Thank you, for helping us, help our children.
We thanked a student for all she had done, and she said thank you for being here to inspire us. Jed looked at her and said, "I wouldn't be here if it wasn't for all of you, so please don't thank me, you saved me".......
THANK YOU
Love J & K
Pics tomorrow!

K-Rob, Savannah and LV

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They have graduated but just can't stay away!!!

Jed and his Gamma Phi babes

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Mead (# 1 Moraler), Jed and Brent (Mr. THON)

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Howdy, we are here and THON has begun!!!!!! We got here about 5pm so we didn't miss pre-thon. Everyone seemed to love the bracelets that we made. I could hear the bells jingle on them while everyone was learning the line dance!
Jed is ok, his GI appointment went ok, he will at some point have a lactose test and they will check for abnormal bacteria in his small intestine, also looking for irriatable bowel syndrome. None of these tests are immediate, there is no real hurry, his stomach has not hurt in almost 2 weeks!!!!!
We stayed at THON tonight until 8:30, Jed just got so tired and Danny was a bit tired too......I was up later then them last night and up hours before them this morning!...Sissys! oh and I drove here.
Anyway that's all for now. Savannah and her crew made it up in one piece, I don't know how late they will stay on the floor tonight.
I am going to bed now!
Love Jed and Kristin below are some pics

Jed preparing for THON

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This is Jed Froday morning while we were packing!

Jed's "crew"!

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Dan learning the line Dance...I think!

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Jed

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Jed found a great place to sit, that is our group behind him!

Jed with his poster

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We found Jed's poster on the wall!

Jed and Christie

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We ended our evening with an awesome dinner at the Corner Room and our server was none other than our great friend Christie!!!!

Hi, I am up and packing for THON!!!!!!!! Yay, this is like a very busy family vacation for us! Jed worked hard until late last night to get most of his homework finished for Monday night school. He got all his clothes out for packing.....he is ready~! We are leaving around 11am and heading to Hershey first. Jed has an appointment with a GI doctor at 12:30, of course after almost 3 years of constant stomach pain of one sort or another last night he says " my stomach hasn't hurt all week" ....of course it hasn't, we have a Dr ready to look at it! Oh well, I'm very glad that it isn't hurting him now but if I cancel this appointment it will definitely start hurting tonight!! Cross your fingers that he does not catch anything while at THON! His ANC is only 300 so that puts him at risk but last year the nurses at clinic were not thrilled that he was going at all...i don't think his ANC was even 100 and he did fine. He should be ok this year too...right?! Lots of hand sanitizer~!
After his Dr appointment we are off to State College and the wonderful craziness of THON. Remember go to THON.org and watch the live feed, it starts tonight at 6pm. Sunday between 10 and 10:30 Savannah will be singing and at 4pm they announce this years total. Last year we beat the previous year by 1 million!!!!!!! We all are prepared for less this year though, that's ok, anything is good. for those unaware all money raised goes to the 4 Diamonds Fund which helps all children and their families treated at Hershey Med center for cancer. The money goes for research, support for the hem/oc team, Dr nurses, child life experts and financial help with medical bills not covered by insurance. They also give us gas vouchers for family to travel back and forth to Hershey and meal cards so the parents don't have to pay for meals while staying in the hospital. There are many more things they help with and all the money is raised by Penn State students. It is a wonderful thing. Through this research the help extends far beyond Hershey Med Center.
Ok, so I have to go pack. I am taking my laptop with me so I hope to update with some pics while we are there.
gotta go..........
love Jed and Kristin

Hey. well the day was not as long as anticipated. His ANC is only 300, it was 500 2 weeks ago! They took him off all chemo over 3weeks ago to get his counts to come up, um, not working yet! He did get vincristine today but not the cytoxin....that's the one that takes hours. He had his inhaled antibiotic today also. He is not fond of that. He threw a little tantrum, said he was not going and no one could make him. I told him that I couldn't make that call he would have to talk to the Dr. He said "no you tell him"...of course! Holly and I decided that instead of arguing with Jed we would just send in the Dr. Dr Unger came in and said "Jed, get up and go to pulmonary...now"! He gave him the option of getting this antibiotic IV....it takes over 2 hrs. Jed decided to put up with the inhaled variety...it only takes 25 mins. After we left he started talking and has talked non stop since! His anxiety gets so bad it makes him nauseous, increases his pain and just sends him over the edge and as soon as everything is over and he is finished he is fine! I feel so bad for him but at the same time he drives us all nuts because we know that he makes himself feel worse by getting so strung out. But I guess if I was him I would most likely be the same way.
This chemo will be skipped and not made up.....that kinda bothers me but that is how the protocol is written.
The good part is that he should not be very sick for THON. The vincristine he got today will probably bother him for a few days, it sometimes flairs up his pain issues but it doesn't usually make him pukey for any period of time....thank goodness! We are ready for THON!!!!!! YEA, 3 days away!!!!! Savannah sings Sunday between 10am-10:30am. Go to THON.org and click on the live feed and watch her! Totals will be announced at 4pm Sunday. Check it out!
Ok, gotta go, I want to nap but I need to get on the treadmill, I have NOT been a good weight watcher this week at all!
Love Jed and Kristin

Hi all. Busy weekend. 4 PSU students stayed with us to can in the area. Savannah canned with them and they raised over $1,800 even though they usually have 9 or 10 people and another group tried to take over the intersection we always use! They came Friday night and Jed kept them up late playing Wii, Saturday while they were canning Jed spent some time at my parents and then after they finished canning they took him out for pizza. He was up late again that night too. Sunday they canned and decide to leave before 12. It was cold and the traffic was sparse. Danny, Jed, Savannah and I rode with mom to pick up Gram and we all went to Jack's memorial service. Gram was so glad we all came. My cousin Suzy (pregnant, working, small child at home that was sick and a husband in college and also working) managed to drive over from Rockville, Md. It was so wonderful that she came. All of us being there was very important to Gram. Jack was a very important part of her life for over 10 years and he was a part of ours too. I can't believe she thought we might not come....I'm not sure why that would be an option? Like my cousin said "is it convenient? no, but death is not usually convenient"! I agree. Sometimes there are things to do that you don't really want to do but they are important to a loved one so you just do it. Jed knew this and he is 11! When I told him Jack was gone he said right away that he was going to the "service thing" because A (gram) would need him there! He did want to know if it was one of those things where you had to look at the dead person! He said " I don't get it, why look at the person? They are dead and I don't think they want to be looked at"! It was just a memorial service though! It did prove to be more than Jed bargined for. He stared stressing on the way down, Savannah came with us so of course they had to start going at it before we even all got into the car. He probrably should not have gone, just for the stress factor but it would have been much worse if I had told him he could not go. He was upset the whole way home and when he found out that Chick fil lay was closed on Sunday's and we could not stop then he really fell apart! He cried the whole way home and for a good half an hour after we got home. He said his ear was burning,and swollen and he couldn't hear and his stomach hurt, he was dizzy and sick. after he started to calm down I put some neosporin in his ear and he was better. We went to Long John Silver's...YUCK, he and Danny got fish, chicken for Savannah and I. Jed was much better after that. He gets himself so worked up and then he just has to go and go until he is wiped out. He said later that as the service was going on he realized that Jack really was gone and he wasn't coming back. He was also worried about Gram. He kept saying he was sorry over and over, of course then I REALLY felt like crap for letting him drive me nuts! He is still sleeping now! Needless to say it was interesting and tiring but I am glad we went. I still just don't understand the meanness between Savannah and Jed. When Jed says "hey Savannah" she says "what" like she wants to kill him....no matter what the situation is. They cannot be in the same room or car together without acting like 2 year olds. It really is getting to be more than I can handle. i just leave the room or try to ignore them. Arguing is ok, I can deal with it but it's the meanness and the hatefulness, the sound of how they speak to each other is unreal. At 11 and ALMOST 18 you would think they could control themselves. I don't get it.
Anyway enough of that, it's not like talking about it can make it better, it is just getting worse.
So that's all for now. Jed has an all day chemo tomorrow, I think he is suppossed to have his inhaled antibiotic also but I don't know how that will work. Friday he has a GI appointment to address this stomach pain and we will leave right from there to head to State College for THON!!!!! Yea!!! We are so excited. We will be gone until Sunday night. I am just happy to go somewhere!!!!!
Gotta go get on the treadmill ( I ate all weekend) and then wake up Big Jed!
Love Jed and Kristin

Hi. So it's quiet here. Jed refuses to get up. I woke him up at 9:30, at 10 Grace called and wanted him to go to Jase's daycare with her..he said no and went back to sleep. I spent 45 mins vacuuming the 2nd floor all around him, still sleeping. I wish I could sleep like that! Tomorrow we are going to get Gram again, she needs to come sign papers and we have to shop for a couch, and measure to see what other furniture will fit. The new carpet went in on Wednesday and the cabinets are finished being painted. She can move in whenever she is ready.
Tomorrow evening we are supposed to have a few PSU students here for the weekend.....I think...I'm not 100% sure and I have no idea how many! It is the last canning weekend before THON...which is next weekend! We are excited....THON is unbelievable.
Sunday is the memorial service for Gram's Jack. Jed has informed me he is going. I think Savannah is staying here because we will still have company.
Saturday Danny and I have duel therapist appointments!!!!!!!!!! Yup can't get more romantic than that on Valentines Day...hey at least we will be mentally stable....for a day. I have been going for awhile....wonder why??!!! Danny now has his own guy....Frank...yea Frank.
Jed starts chemo again next Tuesday. All day cytoxin infusion.
Next Friday he has a GI appointment so they can check out this stomach pain of his. We are leaving right from Hershey to go to State College, THON starts at 6pm. I hope his counts are good because then he handles the cytoxin much better. I just want him to have a good time at THON.
I guess that's it for now. Have to go do laundry...it never goes away~~~
Love J & K

Hi ya. all is well here. Today Mom, Jed and I went to Baltimore to pick up my Gram and bring her up to look at the independent living place we found for her. Her Jack passed away Saturday evening. She is ok, just very grateful for all the wonderful years they were given. We are relieved that he didn't linger and suffer.
So, Gram loved the place we showed her. It's Country Meadows in Leaders Heights. The only apartment coming available is the biggest unit. That's exactly what she wants! It's 1 bedroom, a full kitchen, living room, dining room (den) and a bath and a 1/2. She took the tour, got all the info and wrote the deposit check. They are putting in new carpet and painting the cabinets, it should all be finished by the end of the week!!!!! She doesn't have to move in right away though, thank goodness. The woman has 8 big closets in her house and everyone is packed with clothes and shoes! She has mucho pairing down to do! When we took her home we went around and tagged all the the stuff she wanted to take with her. In the coming weeks we will help her get stuff organized, get a moving company...Megan????? and Dad has an auction house coming to pick up all the unwanted stuff to sell. I think it won't be long and she will be living up here! Mom can just go 1 more exit on the highway on the way home from work and pick her up for dinner! The activity calender for this place is crazy! Way more of a social life than I have. Jed was reading her the list of things to do....he was amazed that they have Happy Hour 3 nights a week and cocktail night once a week! He just thought that was so cool. He is feeling pretty good. We are trying to get a GI appointment set up for this week. This stomach thing comes and goes but it just needs to be gone! I hope we can figure out what the issue is.
I think that is about it for now. Treadmill time for me. I told Jed that when I lose 10lbs we can go to Teresa's (a local pizza sub shop) for big fried shrimp subs, pizza and onion rings!!!!!! a little counterproductive I know but hey it's a great goal! 4 more to go...I hate to tell Jed, but that is at least a month...well knowing me it might be never! Poor Jed!
Gotta go, No chemo tomorrow but I have a dr appt! Have to get all my leave papers together...again.
Love Jed and Kristin

Hi ya. Yeah I made it through 10 paid working days!!! I know that is very pathetic but....oh well. As long as all my leave papers are approved I should be off until the 1st week of august. We shall see! I hate to make definite statements because they always come back to bite me!!!!
Jed did well today with Hop. It was supposed to be their last day hangin' out but turns out I need him tomorrow! Mom and I are going to look at old people homes.......not as bad as it sounds really, for my Gram Martin. We would like her to be closer to us by the end of the summer. She is in Towson right now, about an hour from us. I can't imagine how hard it will be for her to leave that place. She has lived there over 50 years I think. She needs to be closer to us now though, she is 85 and her significant other has entered hospice for late stage prostrate cancer. When he is gone she will be alone..that's just to dangerous. Gram and Jack have been together longer than Danny and I have. They have been great friends and partners for each other for over 10 years. When my grandfather died in 1994 we were very worried about Gram being alone but she started dancing every night of the week and that's where she met Jack. I know they have given each other much joy and how wonderful for them to have that from their 70's into their 80's. She even took him to Vegas for her 80th birthday! I can't imagine how hard it will be for her to lose him. He has been a great gift. at first it was very weird to see her with someone that was not Granddad but I know we all came to appreciate him for his dedication to Gram. He will be missed. So we are visiting independent living places to find a good one for Gram. It has to be a place where she has her own apartment and if needed 24 hr access to on site medical care, it also has to be a place we like!!! No weird old people homes...they smell icky.
Danny has to take the doggie to the vet, he has a thyroid condition and needs regular blood work and meds!!!!!!! When we found out the dog was going to need ongoing medical care I told Dan he was going to have to do it because I just couldn't! Too many meds to keep straight.
Jed will get to spend another day with Hop!!!
Thanks to my "team" at work for making my 10 days tolerable.....mostly mom! They gave me the easy jobs, making sure I couldn't harm myself or others!
Oh, hey Ralph...see you said if I need anything to call you...I'm calling! That computer thing we talked about is it .com or .org there seems to be both and I want to make sure I get the right one! Actually if you email me can you explain the whole process again!!! I'm sorry, I am only good for 1 task at a time! Thanks so much!
I want to again ask everyone to send loving thoughts and strength to Pete and Trish and their family as they pass the 1 year date of losing Jackson. Jackson was a whirlwind of a boy and we are so fortunate to be able to say he was our friend.
Love Jed and Kristin

Hi, so tomorrow is my last day of work for awhile...I hope! Jed is feeling pretty good..I think! He spent some time at Grace's today and played Wii with Kyle and Savannah. He is now reading his 10 pages...a new rule here, he has to read at least 10 pages a night. Cross your fingers! So that's all that's new here...not much! Tomorrow our sweet, funny friend Jackson will be gone 1 year. Please keep him and his family in your thoughts. He is VERY missed and deeply loved.
We love you Jackson.
Love J & K

Jed is awake, we are watching Biggest Loser and eating dominos.
4 weight watchers points in 1 slice of cheese!!!!!! good god
love J & K

Hi all. Quick update, Jed's counts are ok, not great but not too bad either. He will be seeing a GI doctor at Hershey in the near future to help figure out his stomach pain, he may also start to meet with a pain management specialist to find the best way to deal with his pain issues. he is feeling ok, very tired but he ate his whole shrimp basket at lunch! He did have to run in and throw-up first, but in true chemo kid fashion he came right out and ate his lunch and a dish of orange sherbet! He is napping now! That's about all that's new. I was VERY glad nothing weird showed up in his blood work. I was pretty sure nothing would but I always wonder, especially when he isn't feeling well.
I think I mentioned before that I nominated our child life expert, Janiece for a Four Diamonds award and she won, I found out today that they have 4 awards, 1 for each, courage, wisdom honesty and strength...well they also have a special one.....for someone representing ALL FOUR attributes and that is the one Janiece won!!!!!! Yeah Janiece. She is very deserving...thanks Holly for the help!!!!
Ok, gotta go. I want to nap but the laundry calls :( :)
Love Jed and Kristin

Hi, ok so I feel a little bit like I'm going crazy. Jed was feeling horrible for days, I went to work today and he was up and dressed by 8:30am, he spent the day at Grace's with Jase. He played all day. He got home a few minutes after me and he took morphine and went to bed. He was up 2hrs later and seems pretty good. He is sleeping again now though. Grace said he was fine all day, he did his homework, played with Jase and was awake all day. So am I nuts? He was crying and in pain and miserable the last half of the week and through the weekend and then he has a wonderful Monday....not that I'm complaining but ...weird. Tomorrow I will let the pros look at him and maybe figure out what's going on. I feel crazy! He is pale...really he is! He is killing me! I was so stressed out and worried.....so what else is new I guess. anyway, I'll let you know if anyone gives me any insight tomorrow.
So, ok, I nominated Janiece, our child life expert at clinic, for a Four Diamonds Award.....she is extremely deserving....SHE WON!!!!! YEAH Janiece!!! I wish I could have seen her face when she found out. I think everyone that helps me make Jed better should get an award but Janiece has worked extra hard. She not only makes sure the kids are calm and ok, she takes care of all of us parents too. She's our pillar of strength when sometimes we just don't have any left. I am so happy that she won!!!
Well off to clinic tomorrow, I'll let ya'll know what happens.
Love Jed and Kristin

Hey. So, I just don't know what is going on with Jed. He has been feeling progressively worse as the week goes on. He is complaining that his stomach hurts..that has been going on forever, it comes and goes, the pain gets very bad and then not so bad. The newest thing is his arm, or I guess I should say arms. Sometimes it's just 1 but sometimes it's both, near his shoulder, says it hurts to lift his arms. Then there is his tooth, well as of now it's the hole where the tooth was. He was scheduled to go to the dentist a couple of weeks ago but we were up until 5am that day and his appointment was at 8...we had to cancel. The molar came out the other day but the pain is still bad. If it was any other kid I would say "suck it up, rinse your mouth out with salt water" but with Jed I am always afraid it is something worse than just loosing a tooth and I'm always afraid it will turn into something bad. He is also VERY tired and clingy and weepy. I thought earlier in the week it was just because I was working and not home but I know it's more than that, he really is feeling bad. He takes chemo meds every night and on Tuesdays he takes 21 pills of methotrexate, so he is getting chemo, I'm sure that has a lot to do with feeling bad but this seems different. I don't know maybe I am just overly worried because I am not here all day right now. I have managed to get some sleep this weekend, both nights I think I slept at least 5 hrs straight,.,,,, that is wonderful! This morning he came in at 6:30am saying he needed pain meds and a benidryl because the morphine makes him itchy. I hate to give that to him in the morning because he will sleep all day but I can't argue with him it just upsets him too much. He did ask me, while I was sitting there waiting for him to fall asleep, if you could die if you took too many benidryl. I told him he was fine, he was worried because he had 1 last night about 7pm, another about 11pm and then 1 at 6:30 am. I told him he was fine, not to worry about it. What other 11yr old thinks of that kinda stuff?
Savannah is still working on her room, Hop is going to fix the hole in her floor tomorrow so she can paint it. I think she is going to IKEA today to pick up the rug she wants when she gets off work. She has to get it finished because we have Penn State kids coming in a couple of weeks for a canning trip. THON will be here soon....Feb 20th, the link for THON is on the right, check it out if you don't know what I'm talking about.
I have to work until the end of this week, then I will put in for another leave from work. Tuesday we have clinic. Jed said he might want to go up tomorrow instead because he feels so bad, he will have to let me know tonight so I can stay home in the morning. I guess I just have to wait and see.
Is it going to snow here or what? One person says yes a huge storm, another says flurries...make up your mind people! I am hoping for NO SNOW!!!! Our back gate is frozen closed, everthing is covered in ice, it melts and then refreezes.....yuck
Ok, enough whining, I have laundry and dishes to do
Love Jed and Kristin