Hi. Back from clinic. He has a white count of .1 so no all day chemo. He got his vincristine but no cytoxin. Needless to say he was not upset. We did our usual McDonald's stop and now he is napping.
One more chemo left!! I can't stop saying that but I am also scared to say it. The thought of starting this over again is enough to make me want to throw up.
We have managed to keep the party a secret ..so far!!!
I have not heard one word from anyone at school about coming to Jed's party except his teacher from last year, Diane and his new one, Ben. Not one parent has emailed me to say they were coming yet. Oh well DJ & the Dietz clan will be there & the Althoff's too!!! Maybe it won't be a huge party but it will be fun. Cross your fingers for halfway good weather! chilly I can handle just no rain Please!
Gotta go,
Love Jed and Kristin

Hey Ya'll. Home from a great Birthday dinner at Chili's. The manager there even gave Jed a bag of gifts! Then we all went to mommo's and Hop's for cake and gifties. It was fun and I think Jed had a great birthday. DJ was along...we figured he hadn't eaten with us since yesterday so he might be hungry. He said spending the weekend with us was like a free buffet! What a nut. we do like to eat though. Tiersa came up and brought 'the mac". Jed would have been very disappointed if she had not come. He so loves that funny kid.
Chemo tomorrow...if his counts are high enough. He is having weird stomach pains on and off. I guess that's all for now. I think I fixed the link for the VA pics and I will also put up the pics from tonight. I am REALLY tired! The wild weekend is catching up with me! DJ is not a roller coaster lover so Danny and I had to ride them. I love them but I get sick...very sick, very quickly. Danny is terrified of them! It was interesting. I took 2 Dramamine and 2 zofran and still had to really work at not throwing up. I was cussing myself for not springing for the extra 120 dollars and having Savannah and Kyle come down for the day....Kyle rides everything. Oh well, maybe next time. I survived.
Only 2 more weeks of chemo left...honest? can't really believe it.
Gotta go to bed.
Love Jed and Kristin

Hi I'm putting the link for the VA pics on the right. Today is Jed's birthday..he is still in bed and we are hoping he is well enough to go to Chili's tonight.
Love J & K

HOME!!!! I will tell all about our trip to Busch Gardens and Jamestown tomorrow..with pics!
of course Jed slept the whole way home and he is "so NOT tired in the LEAST"..oh yipee
Love J & K

Hi Ya'll, So we are here in Virginia. We ate...of course ..we do that a lot and then we went to the Yankee Candle Store. The boys did every thing there you could. They dipped candles, they made wax hands and they made their own jar candles. Now we are watching Transformers 2, Jed is trying to explain to Danny what is happening. He is a child of the 60s so he never watched transformers..he is very confused! Doesn't understand who is good and who is bad! Jed is SO rude, acting like Danny should understand what is going on! DJ of course is quiet and watching!
I am waiting for the PSU game updates on facebook!
I made a wax hand too by the way..yay me
Gotta go
Love J & K

Hey. Jed made it to school today. His backpack is SOOOO heavy! I am constantly rubbing
"blue stuff" on his back and I am sure it is because he puts that thing on his back. I told him to drag it!! He is way too cool.
Harley open house is this weekend. Tonight is the parade. Last year at this time we were getting ready to lead it! This year I am still waiting to see if Jed is even going to go watch. He is sleeping. I will wake him up at 4pm. If he does not want to go he will stay with mommo and hop. Jed is very tired. He said he hyper extended his knee 3 times today. That of course puts me on edge as that was one of his relapse symptoms. I just kind of blew it off and told him he was tired, and that probably is exactly what the problem is but of course inside I want to throw up. I also wanted to yell at him "no you didn't" when he told me about his knee. But I acted like it was no big deal...and I am sure it's not. Only a big deal in my head! Like how I make this "all about me"!!??
Anyway. Jed did his first real "project" for school. His subject was the Aztecs. Instead of just gluing pictures on a piece of tag board he wrote a report. He put it in a folder, put a picture on the front and put some pictures in the report. I read it, he did a great job. It was pretty cool to watch him read the info he found on them..he actually seemed to enjoy it!
I guess that's it for now. I don't know if Jed is going to the parade tonight or not. Guess we will find out. We are leaving tomorrow around 11, heading to Va. Then going to Busch Gardens on Sunday.
Love Jed and Kristin

Wet head Jed and Jared at the Four Diamonds Walk..


Skinny butts Jed and Eli

Jed slept until almost 2 pm yesterday! He said to wake him at 10 today..not sure why! Mr. Phillips will be here around 4pm to bring Jed up to date. He has a report to write...maybe that's why he wants to get up. We leave for Busch Gardens on Saturday. Should be a fun weekend.
I just took a picture of a HUGE spider on my deck and now I can't stop itching..feels like it's crawling on me...but I know it's still on the deck!!! yuck. Seems to be an abnormal number of spiders this year. yipee!
Love J & K

The king has awakened. Wants pizza..wow what a shocker! The party is growing...slowly but surely! Even the manager from Jed's favorite restaurant is coming! (Chili's..as if you didn't know)

Go to this website
www.xbox.childrensmiraclenetwork.org
and vote for Penn State Hershey Medical Center Children's Hospital!!
We have slipped to 7th..
VOTE!!!

Hi. Home from clinic. His counts were actually higher this week than they were last week. Weird. He slept through all his chemo..as usual. Better than puking through it all. Jed ordered the Dominos he wanted when we walked in the door and then went to bed....repeat of last week! we saw Eli, he came in for his chemo as we were leaving about 3-3:30. he looks Great! Hope his 9 months of chemo go smoothly and gets rid of this crap once and for all. I mailed invitations to the 7th floor and dropped off a bunch at clinic today for everyone. I REALLY hope lots of people show up. I also dropped invitations at school and his teacher was going to hand them out today while Jed was not there. So I guess we shall see!
We leave on Saturday for Busch Gardens for the weekend. Taking DJ of course! This is Jed's B-day gift! Tuesday eve we are going to ...yup, you guessed it.... Chili's for his official b-day dinner!
Only 2 chemos left....really??? I still am not believing it!
Gotta go
Love J & K

Hey everyone!!!!
come on...we can win!!!

Go to this website
www.xbox.childrensmiraclenetwork.org
and vote for Penn State Hershey Medical Center Children's Hospital!! I think you can vote 10 times a day...I think we are in 2nd place....I know with your help we can win!! Thanks

Also, I know I just told ya'll about the party and I am impatient but I haven't gotten ANY emails,,,I am sad...someone is going to come right????
Love J & K

Hey. Ok so I said I wasn't going to do it ...but I have to....We are having a party for Jed to celebrate being finished with chemo. I just could not let it pass without a party.
Here's the info:
When: Saturday October 10th at noon
Where: John Rudy Park Bluebird Pavilion 400 Mundis Race Rd York, pa
We will have sandwiches and drinks and munchies but feel free to bring your favorite picnic dish to share. :)
If you are going to come hang out with us please send me an email by Oct 3rd.
Here's a map..so you have no reason not to come!!!
http://www.mapquest.com/mq/2-ISaMIey4YgbJ#a/search/l::400+Mundis+Race+Rd:York:PA:17406-9721:US:40.02044:-76.705489:address:York+County:1/m::7:39.941809:-76.672309:0:::::1:1:1::/so:John+Rudy+County+Park:::d::25::::1:/e

There was just no way I could let this go without letting Jed know how proud we are of how he has fought this battle.
Please no gifts though. If you feel you must we will be accepting donations for The Four Diamonds Fund through Penn State York's branch where Savannah is currently attending school. (checks can be made to Penn State Dance Marathon)
That is by no means expected...just come and let Jed know how happy we all are that he has finished this part of the journey.
Oh the biggest part of this is that it is a SURPRISE!!!!! Please, if you see Jed, DO NOT MENTION THIS!!!!!!
I am trying REALLY hard to surprise him~

cancersuckskdsj@gmail.com.....................let me know if you are coming!!
Love J & K

Hi all. Jed is just now eating his domino's....he is not eating the bread bowl he wanted last night instead he is eating pizza. We will feed Danny the bread bowl for dinner tonight! Jed is very tired, his stomach is not feeling so well. So no school today. I am not really sure about tomorrow either but the teacher is coming tomorrow eve to tutor him.
Ok, I need some ideas. I am TENTATIVELY thinking of having some kind of SURPRISE gathering to celebrate Jed's last chemo. I have no clue where. We might just end up going to Chili's for dinner...that is his fave place. I would really like to be able to invite some people that have been such great support for us. I thought maybe the restaurant where Savannah works but it is boring for kids. I would like a playground or a jumpy thing. It will be the 1st weekend in Oct so I am afraid of the weather, we will need something with a roof. I also need to keep it cheap!!!! Sorry I know that sounds bad, but well, it's reality. I just need some ideas. So far I was given Longs park....very nice but I'd like to be closer and Sam Lewis park I am not sure of the accommodations there. Friends have volunteered their homes but I don't want to do that..to stressful for all. I was thinking of having it here....no room, mean dog..never mind. So ANY ideas anyone has I will take, not just for places but for the whole thing. Of course if money were no object this would be easy!!! Gotta go...chemo kid is calling
Love J & K

Hey, We are home...after a very long day. We both were sure that he would not have the long chemo BUT....the one sure thing about Jed and his treatment is....nothing is a sure thing. His ANC ended up being 650...he needed 500 for chemo. It takes SOOO long for him to be hydrated enough to get this med that we never start until after 1pm. But we are home now and waiting for Dominos. Buy one get one free Tuesdays!!!! But of course Jed does not want pizza he wants a bread bowl! Big bill tonight. oh well. The dominos delivery will be slowing down after chemo ends...our house will be in shock. Pizza withdrawal.
Gotta go, food is here, have to wake King Jed
Love Jed and Kristin

Hey all, off to clinic this morning. He is scheduled for an all day chemo but his white count was .3 on Friday and I do not see any kind of miraculous recovery since then! He did go to school yesterday. I think Mr. Phillips is coming tonight for tutoring....I have to dig out the dinning room table. I guess that's all for now.
Love J & K

Hi, just a quick note...because I'm tired!!! We had a great time at Grace and Jim's yesterday despite the rain. I actually saw a guy that was my boyfriend when I was 13!!! Very weird!
Jed is doing ok, feeling tired but good. I don't know if I mentioned this before but Jed's LAST chemo is October 6th!!! He doesn't know that so if you see him don't tell him. I want him to see the sign when he gets to clinic that day and be surprised..also I am going to get someone to put a sign up outside and maybe some balloons so they will be here when we get home!
I know I seem to always be asking everyone to vote for stuff but...I'm going to again!! Go to this website

www.xbox.childrensmiraclenetwork.org
and vote for Penn State Hershey Medical Center Children's Hospital!! I think you can vote 10 times a day...I think we are in 5th place....I know with your help we can win!! Thanks in advance!
ok, that's all for now.
Love J & K

September is Childhood Cancer Awareness Month..today is Childhood Cancer Awareness Day. Today approximately 46 children will be diagnosed, that means 46 families lives turned upside down. 1 in 5 children diagnosed die of the disease and a large percentage of the kids that survive suffer from long term, sometimes lifelong side effects. Our children deserve better. No one should have to go through the misery that these children endure. Awareness leads to research and research leads to a cure. Spread the word and help save our kids.
CANCER SUCKS.. lets cure it.
Love J & K

Headed home. Counts still suck but he's fever free.

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Hi all. So the most recent info is.....we are still here. But anyway, his counts have not improved but he has not had a fever since the one he had Tuesday night. He is now having some stomach issues but I am hoping that is due to the antibiotic and not a bug. All his cultures are negative so far. If they are still negative tomorrow and he is still fever free I am going to lobby HARD to get out of here. They are leaning toward starting him on neupogen to help his counts...that means shots at home...yuck. The hope is tomorrow his counts will have improved..even just a little bit and they will forget the neupogen. He is sleeping a lot. Watching cartoon network right now. He ate some of his dinner and has eaten some dry cereal. That is about all the excitement here in the Bat Cave. Danny came up last eve and brought our stuff, he took off half day today and came up to hang out. Saturday is the big "holler in the holler" at Grace and Jim's so we'd like to be out to enjoy the party.
Savannah just called me asking if I was buying a house on the beach!!!!!!!!!!!!!!! I wish. She said there were calls from a couple of people about beach houses and they were from Puerto Rico....No, no such luck, we are not moving to the beach I have just been researching some vacation spots. Danny wanted to take me to Vegas the week before Thanksgiving, we are layed off and Jed will be finished with treatment. Danny thought it would be a great time for he and I to have a just grown-ups trip. Well Vegas sounds fun but not my idea of a relaxing trip...and besides it will be November...I want warm and beach and sand...so i am looking at Vieques...a little island off the coast of Puerto Rico. You can see St Thomas from the shore. Anyway...is it wrong to be planning a trip WITHOUT Jed while we sit in here because he is sick? I feel bad and am wondering if I will actually be able to leave and not take him with me. Vieques is like the USVI but not near as expensive. So we shall see. at some point I will have to come to grips with the fact that I have credit cards to pay off and then I will also have to go to work....! Oh and we are going to Busch Gardens for Jed's birthday at the end of the month..taking D with us of course! I'm not maxed out yet though (almost)!!! Geeze that's sick!
Ok, anyway this turned into a long post about nothing. I'll let ya know what's happening with our departure from the Bat Cave
Love J & K

I have my computer now, so no more messed up updates from my phone. The latest is, his chest xray is clear, he had 1 dose of antibiotics,they tested him for strep and his fever has not returned. His throat is not really sore, just a little. I am hoping they kick us out tomorrow. He is sleeping soundly and not even getting fluids. Time to go home!!!!
I will keep you all posted
Love J & K

oh I have to share,,,check out www.peopleofwalmart.com yes I know it's not nice to laugh at others but OH MY GOD....so very good for a chuckle...people amaze me!

Hershey med, bat cave #7255. Admit for Iv antibiotics whoohoo!

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Looks like we are making a run to Hershey AGAIN. He had a fever last night of 101. I gave him tylenol and sent him to bed. Emailed clinic to tell them what's up and Denise called this morning to say they want to do a blood culture on him..just in case.
needless to say Jed is not thrilled.
I will keep you all posted,
Love J & K

Multimedia message

Jed can see now!!!!

Danny telling his travel stories


danny and his baby
Jed 1st day of 6th grade!!

Livi-Mac..kissin the fishes

K-rob, Fred and Jed hanging out!

Hey ya'll. We had a great time at Bob and Sharon's cook-out yesterday. The food...as always was awesome. K-Rob (Katie) came to visit from Pittsburgh. She looks fantastic and is as great as ever (nothing new on that front)! It was so nice of her to take the time to come hang out here and visit. danny and I rode for awhile yesterday and Jed went to his little sister's birthday party before we all headed to the Shultz's for food! "The Mac" was there...being her very cool self. She ran all over the yard saying "go, go, go, go" and she was so thrilled when Jed walked in. It was a very nice day...made even nicer by Adam's rockin' bushwhackers. Yum, too bad I was driving...well maybe that was a good thing, kept me in line!
Danny hurt his back so he didn't stay too long. He came home to rest it.
We took K-Rob to breakfast this morning before she headed home. All in all it was a great weekend. Back to school for Jed tomorrow...Savannah too! We head to Hershey in the afternoon for counts. Jed's birthday is fast approaching..the big 12!!! oh my. Where does the time go? I guess that's all for now.
Love Jed and Kristin

Hey. Well Jed didn't make it to school on Friday either. He was with my Dad all day though and he spent the day sleeping in the truck while he ran errands! He slept yesterday until 2:30pm and he went to bed before midnight last night. He is headed to his little sister's birthday party this afternoon and we have a cook out to go to at 4pm. my brother's in-laws invited us and our "extras"! K-Rob is headed down from Pittsburgh to stay until tomorrow. It has been awhile since we have seen her....Feb. maybe??!! Wow, didn't realize it had been that long.
Back to school for Jed on Tuesday. He has counts but we will leave after he has his half day of school. We were supposed to have another eye appt again but they never called to tell us what time. I think Jed's teacher is coming Tuesday eve to catch Jed up...already!
His glasses should be ready by Tuesday also.
I guess that's it for now. I have to go wake the king so he can be ready for the birthday party. Danny and I are taking a ride for a couple of hours.
It is so very sad that summer is ending. BUT that also means Jed is almost finished with chemo!!!! I am having a hard time believing it. Our thoughts are with those that are not finished or are starting over. Our love and best wishes to them and also to the families of the kids that are no longer with us. The list of those seems to grow everyday...it is astonishing how many we are losing to this disease. A cure is in desperate need.
Gotta go,
Love J & K

Hi all. No school for Jed today. He managed to wipe himself out yesterday. He also has a sore knee where he fell on it a few days ago. He slept until almost 3pm today. I hope he is back to school tomorrow..half day. Other than that nothing else new here.
Love J & K

Why is it that cancer just does not want anyone to have even one cancer free day? I just found out a boy diagnosed when Jed relapsed lost his fight last Thurs. He was fine, doing great...now he is gone. 2 other kids we know are being "made comfortable" WTF...these are children. I just don't get it. Now I find out another boy we know through our listserv for parents of kids with relapsed ALL has relapsed...again. This very brave 13 yr old was diagnosed at the age of 3...off treatment and doing very well for FIVE years...FIVE..he relapsed in Nov of 2007 and now while in maintenance he relasped again. There are no words to describe how much this sucks and is so F'n unfair.
www.carepages.com/carepages/thomasmolina

Big Day today, Jed stayed at school ALL day! 1st time since Jan of 2007!!!!! He has been sleeping since 5pm!!! He joined chorus today...it was in the afternoon so that's why he stuck it out! He said he is staying tomorrow too...hhhmmmm, we'll see!
Thanks for all the well wishes.
Love J & K

Home from a LONG day! Jed did great in school. Hop bought us lunch with Gracie and then we headed to Hershey. His white count is the same as last week .6. Will get the rest of counts tomorrow. As of now we are still holding all chemo. His eye appt was...a waste of time, they have told us NOTHING about why or is it permanent, is it from chemo, will it fix itself, will it keep getting worse ,etc;;; we go back again next week so they can look at his eyes AGAIN, the Dr said he wants to see if there is a difference from one week to the next....um ok. His glasses should be in before next Thursday. I hope that helps at school. He said he sits in the back, I told him to ask to be moved to the front but he said the board the has the assignments on it is right next to him, he is not sure which one is more important to be able to see! Poor guy. I'll wait a couple of days to see how he handles it before I jump in. He is back to school tomorrow for another half day. Hop will take him and pick him up.
Gotta go, sleepy!
Love Jed and Kristin
Today was a good day. long but good!

FW:

I was worried about how kids would receive him..he was barely out of the car n kids were high fiven' him!