Hey all. We are home!!!!!! How nice is that?! We left late this afternoon. I have to say leaving there today was one of the hardest things I have ever had to do. Walking out of there while Trish, Pete, Nona and Jackson were suffering was horrible. But my guilt and saddness about leaving them is nothing compared to the heartache and loss they are experiencing. I have to say the extended family of theirs that we met in the last few days are just as wonderful as Trish, Pete, Jackson and Nona, just a great bunch of people. We are so lucky to have met them. We love you guys, you are in our thoughts always.

I read a blog that another parent has been writing and after a few entries I realized the whole blog was crying, complaining and moaning...I do NOT want to be like that, so if I EVER start to whine too much PLEASE leave me a comment saying so! I realize everyone has to deal in their own way but I sooo don't want to sound the way this other blog sounded! I try to remind myself that as much as I'd like it to be, it is not "all about me"! Besides we have nothing to whine about. Jed is doing great, we shaved his head tonight. He had started handing everyone that came into the room a handful of hair...gross! I was lint rolling his pillow, shirt, and his head all the time. So now he has his beautiful bald head back out in the open. I love him bald..he is just so sweet. While we were waiting for Hop to come get us today we were just hanging out in our room. Dr. Unger told Jed that it was good he was leaving because someone had just come into the ER and needed our room. Right away Jed said "mom, lets pack and wait downstairs so they can clean this room and get the other kid in because I know how much I hate being in the ER and I don't want that kid to wait too long". What a nice kid I have!!! Ok anyway, we are home and he is well. Thanks to all of you for the cards, gifts, calls and well wishes...it all helps! Love Jed and Kristin I have to also say thanks to Dr. Blackall, he is helpful on every visit but this time he was invaluable, especially in the PICU...thanks!
(the spell check is not working so don't make fun)

Jackson

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

Today the therapy dog came and Jackson came out to see her. It was so sweet .....and heartbreaking. He demanded that everyone get a card with the dog's picture on it. (see his in his shirt pocket?!)
I can't express enough how much we love this family and how much we love Jackson.

We might be going home tomorrow, it will be soooo hard to leave them. Saturday they are having a big party here for him so we will be back!
Jed is getting better everyday.
Love Jed and Kristin

Jed is doing well. They are taking him off the TPN (food) and he is eating a low fat diet..which will not be a bad thing in our house! We should be home in 2 days or so..yea.

Jackson..oh my. They are making him as pain free as possible and their family and friends are flooding the hospital helping Trish and Pete and Nona cope. There is nothing else to do. Jed knows he's here but not what is happening. I want to stay, to be here for those hallway talks but I think Jed should not be here. There is always hope though, we can't forget that.
Love Jed and Kristin

Quick update, Jed is better he even went to the playroom for bingo! Of course he gets tired and the pain comes flying back when the teacher is going to come! What a shocker. So anyway he has made vast improvement.
Ok, the bad news, Jackson is back. He came in a few hours ago and has blasts in his blood (leukemia cells). They are having a meeting with the Docs right now to discuss what options they have...not many, this is bad..real bad. SUCKS so much. Trish, Pete, Nona and beautiful Jackson are such great people, this is all so unfair. Send your good thoughts, and strength to them.
Love, Jed and Kristin

LOOK HOW PERKY!

jed feeling better!
Originally uploaded by buckley04@verizon.net

I took this this morning! He is feeling much better. He had a jello for breakfast and the Dr. said he could have a noodle in his soup today!!!! YUP, IT'S THE SIMPLE THINGS!

Christmas

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Originally uploaded by buckley04@verizon.net

I have such beautiful children

Jed, as best man!

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Originally uploaded by buckley04@verizon.net

i found this picture the other day. This is Jed at Uncle Adam's and Tiersa's wedding. He was 5 yrs old!

Well today was a little better!!!!! He got the central line out of his leg and it did not bleed, his clotting factors are returning. He had some ice chips and a few spoons of chicken broth...so far so good! All looks promising. Fingers crossed! The docs are sure all this is from the meds he has been getting, you know, the meds that are going to make him better?! Does not make much sense. But who can argue, we are headed in the right direction. He is not quite as crabby either! Thank goodness!
Hey all you college friends, he is bound and determined to be home on the 1st so he can hang out at our house with you! He is also bound and determined to not miss another THON. It's getting close..can't wait. Hi Krob and LV!
Love, Jed and Kristin

Howdy. well we had a few moments of goodness today. They gave him clear liquids and for over an hour we thought it was going to be ok. Of course we do everything the hard way...his belly started to hurt and at that exact moment the resident walked in and when she saw his pain she made him NPO again...so that means NOTHING to eat or drink..... now we are back to the miserable Jed. It is horrible...he is just a mess. His memory is a little messed up from the drugs and he seems to keep forgetting he can't have anything either that or he thinks he can fool me. He wakes up and says "hey, can you get me a glass of water?" Of course I almost say oh, yea ok but then I remember and have to tell him no. So he cries for an hour or so,,, "I want mommo's spaghetti, lasagna, chicken casserole and a fresh carrot right out of the ground." This happens over and over again all day and into the night. Some times he asks for a bottle of tea or chocolate milk to break it up a little. But on the good side medically he is doing better. His blood pressure is holding steady and the clotting problem they have now determined is from the PEG-asparanigase (I can't spell that!) it's not in the spell checker either! Anyway this chemo drug is the cause of the clotting problem and when it gets out of his system the clotting will improve, don't ask me how long cause I don't know! The last time he got this drug was 2 weeks ago, he was due to get it again this past Wednesday but needless to say that has been scrapped for good. He still has the central line, they are using it because his TPN (food) is not compatible with his other drugs and this way they don't have to stop one to run the other. As his other drugs decrease they will get ready to remove the line. Before they do that they are going to give him a big bag of plasma to help clot. That should be interesting.
Mom was here most of the day and Dan is here now. Getting a few hours of sleep after being awake so much has made me a nicer person (I think)!
Oh, ok the light story, now some of you may think this is horrible but it was really funny to watch the drama unfold! I hope I can tell it right. Ok, so we are in the PICU, Jed is getting a ton of fentenoyl ( I can't spell that either)and ativan so some of this was drug induced but most of it was Jed being Jed.
He is lying there with his eyes closed and his arm over them saying " I see a light" so I said ok, Ill close the blind. He ignored me and started saying" No, No, light. Go away light. No don't take me light, oh...oh...I'm to young to die, don't let the light get me" I said what does the light want?, Jed said "It wants to take me, oh here I go...oh I see the gates, there's a desk...with a book" I asked him if his name was in it, he said, " No I had to sign in" Then he says " He's taking me on a tour", I asked Jed if he saw anyone he knew, he said " not really but I'm getting the tour and I have a half an hour to decide if I want to stay" I told him it doesn't matter what he decides to do I have mom privileges that over ride everything and he can go anywhere and I will just come get him and bring him home. He said' nope they closed the bridge. I said it doesn't matter I can still come get you where ever you are so check it out and then I'll come get you, He said "oh, never mind". Now I know to some this is horrible but it really was funny and believe me, before I started to play along I checked ALL his monitors to make sure he was OK! This whole story unfolded with Jed waving his arms and being very dramatic, with his eyes closed! Weird kid!
so that's it, I have to get back to my miserable kid. I sure hope by Sunday he gets clear liquids.....if not we'll all be nuts. Love Jed and Kristin
Oh, one more thing he said he could probably stop hating everyone and not think we are all jerks is Dan gives him 300 dollars.....what a turd

Hey. We are out of the PICU now we are in room 7220. His belly pain is gone but as of right now he still cannot eat or drink...this makes for a very miserable Jed. They took out the catheter thank god! He still has the central line in his leg. They were going to remove it but now his blood is not clotting. All these months of blood thinners and now he has the opposite problem! They are giving him plasma and vitamin K to help but it doesn't seem to be working yet. That's what's happening right now. He is just sooooo miserable! Poor Jed.
I just saw Pete and then Trish, they are Jackson's parents. Jackson is here just for clinic. He is heading in the right direction and doing well!
Gotta run. I'll write more later. Love Jed and Kristin

Hey, Quick note, I think we could maybe go back to our regular hallway tomorrow. His stats are holding steady. He is still really not a happy camper but we fought to get his pain meds increased and after some help from Dr. Blackall the PICU team finally stepped up. That's all that's new here. I have a great story to tell about Jed and "the light" I will do it when I have time to get it right..it's pretty funny.
He did say today very quietly "ya know, I'm so hungry I'm going to have to eat my little pinkie"!
What a fruitcake! Love Jed and Kristin

Hi, I think it's Wednesday, not completely sure! Jed continues to improve...at least his stats do. He is feeling horrible. The pancreatitis is so very painful. Now that his blood pressure is stabilized he is getting Ativan, this helps calm him. He is also on a fentenyl PCA, we had a few arguments with the Drs over his dosage. Jed has such a high tolerance and even when they read his history they don't seem to believe it. I think we have finally gotten all that straightened out. So he is mostly sleeping. He wakes up every once in awhile and says,"oh great, I'm still here the nightmare is not over yet". Poor guy. He is trying so hard. My hope to to be back on our hallway by Friday. Mom stayed all night, Dan slept in the hotel room and came in when mom left at 5am. I got 2 different 45min naps yesterday and an hour and a half one this morning. That last one I really needed. I have been up since Sunday morning at 8am! I am way too old for that! Oh, yesterday he noticed there was a "tube in his winkie", he was mad that I hadn't told him but I explained that with that you don't have to get up to go pee, he thought that was a pretty good idea! Anyway, keep your fingers crossed that he continues to improve so we can get that nasty line out of his leg and the "tube in his winkie" out too! Love Jed and Kristin

Hello to the outside world! We are in the PICU. Yup that's intensive care..He was having trouble keeping his blood pressure up so last night (this morning) around 2am they moved us to the PICU. Because he is a cancer patient we get one of the rare private rooms but I can't sleep there...Dan came up right away last night, about 2 hrs after he got home from here! Mom has been here all day. He is in extreme pain because of the pancreatits, he can't eat or drink ANYTHING and he has a huge central line in his groin. Needless to say we are doing everything we can do to keep him asleep. He has made great progress today, which is wonderful because maybe by Friday we can go back to our hallway. At first they said at least a week in PICU but he is gaining ground fast.After all these years of treatment this is our first trip to intensive care.Hope it's the last. I really am glad we are there right now though, he has his own nurse, he is her only patient..love that! Dan got a hotel room across the street so I got to run over and shower but I won't sleep there, I got a 45 min nap on a couch today, that's enough. I don't like to be away more than a few minutes. Right now I am eating some dinner and getting ready for the long night...just let him sleep! So that's it for now, when I have a chance I will update. other than the pain he is doing well, his blood pressure seems to be under control. Love to all, Jed and Kristin

Hi. So as of right now the diagnosis is pancreatitus (or however you spell that). Yuck, very painful. He spent the night throwing up and on a lot of pain killers. The chemo that was going to be tomorrow will not happen and more than likely this phase will end without the last week happening at all...not that great of a thing but the meds are causing this problem. So we are just hanging out, I am keeping Jed as full of good meds as possible. I think there is just really no reason for him to be awake and in pain when he can be sleeping. The gastro team is headed up here sometime today, they are going to push for an NG tube (up his nose to his belly) but if we can keep him from throwing up maybe they will change their minds...I hope! The only thing to do for this is to rest his insides until all the inflammation is gone. No food, no liquid blah blah blah. This is soooo much like last Feb. ..same thing but at least now we can rule out the gall bladder! gotta go Love Jed and Kristin
Looks like we are here for awhile

Hi All.
we are in the hospital! Room 7225. Jed woke up this morning with extreme pain in his stomach. It got so bad he ended up in an ambulance. We went to York hospital first where they gave him pain meds and took x-rays. They were really nice but none of them wanted to treat him beyond that, they arranged transport to Hershey within about 2hrs! Hop was dissapointed because it was an ambulance and not the helicopter! So here we are, he is resting but still in alot of pain. They are talking pancreatitius...I think we have done this before! Last time it turned out to be his gall bladder, this time it's still a guess. So we are just waiting...again! I will keep you all posted.
Love Jed and Kristin

JACKSON IS HOME!!!!!!!!!!!!!
HOW WONDERFUL IS THAT?
WE LOVE YOU GUYS,
CONGRATS TO YOU, TRISH PETE NONA AND BIG JACKSON!
YEAAAA!
Love Jed and Kristin

Flowers from Danny to Me!



Meg, thanks for the comments!!

Jed "the bug" at clinic!

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Originally uploaded by buckley04@verizon.net

He is just so cool!

Hi! not much new, we have just been hanging around. He seems to be more like himself as the steroids wear off. He is still eating more though! Our house smells like garlic, he has a thing for it. I am constantly cooking chicken with roasted garlic. I bet I have gone through 4 jars of roasted garlic in the last 2 weeks! Someone actually said to me "oh, you should roast your own garlic", right, they make it in those jars for a reason! I know by the end of this phase I will be at least 10lbs heaver!
Yesterday he got a box of goodies from my Aunt and Uncle. Juggling, magic tricks and drawing..very cool. Thank you!
My leave for work was approved again so now I am off until July 3rd...yea! I was so surprised at how hard it was to be at work in December! Not really the work part just the worry part. So that is all taken care of.
We had a cat, for 2 days. A pretty grey cat was on our porch so we fed it and got it a box, we had it all set up. I was going to ask Savannah's doctor if we could bring it in...she's kind of allergic. But after I fed it for a couple of days and it lived in it's box, it left me! Dan said it probably went home! I feel cheated on! Oh, well I guess I don't have to worry about Savannah being able to breathe! I guess that's it. Just hanging around. Love Jed and Kristin

Hi. Clinic today went pretty smoothly. He was given 2 chemo drugs over just a few minutes. He is having back pain from the decadron but this morning was his last dose for a week so hopefully he will have time to get better before it starts again next Tuesday. Next Wednesday he has to get PEG shots again in his legs, I am not going to mention it until next week! He is tired but is not over the top emotional like he has been.
I guess that's all that's new. Gotta go, Love Jed and Kristin

Hi! Today was GOOD! He woke up before 10 and was not crying, he has been pleasant most of the day. He and Dan went to the game store, again, and then they picked-up DJ. They played Wii and then Andy, Savannah's boyfriend, came over so it was video game heaven. Savannah is hooked on guitar hero, she played until after 11pm last night, by herself! He is starting to eat more, we had to make a run to get cinnamon buns to cook! He was so happy he was dancing! Tuesday morning is his last dose of steriods, he is then off for a week and back on for another week. He is starting to get bone pain and he is still kinda itchy..weird. So that's it, it was a good day...yea! Love Jed and Kristin
Did you like his gross loose tooth video?

Hi, so we are in the mitts of decadron mood swings. He cannot handle ANYTHING! Everything turns into a meltdown, He can't help it and then he gets upset because he can't calm down, it's a vicious circle. He wants to die, he hates his life and 2 mins later he is playing guitar hero with Savannah...of course that leads to a yelling match and then all is well for awhile. He did go to Mr. Jim's birthday dinner, I took him over, he was Jim's surprise! He did ok but there was a lot going on. He was still hungry so Grace and Jim took him to Teresa's Pizza place for fried shrimp and fries. He seems ok now but even Savannah answering a phone call for a minute pushed him over the edge. She is doing pretty good with him, I have to remind her not to argue because he is not rational...just agree with him! He looks terrible. He is also itchy, that is not a reaction he has had before. The shots he got on Wednesday can cause allergic reactions but this didn't start until Thursday. He is blotchy and his eyes look weird. I will call on Monday and we go back on Tuesday for MORE drugs. I think his hair is slowly falling out again :( I know he is not thrilled about that. Everyone is just holding their breath around him because they are afraid to set him off but sometimes even nothing can send him into a meltdown. Needless to say we can't wait until this month is over. Give me hospital stays over steroids any day!
I'm still working on this new site so let me know what you think and if you have any ideas for me.
It's quiet here right now...AAHHHH! The dog is clean...smells much better! Still weird.
Love, Jed and Kristin

Hi, Jed did fairly well today. He is VERY tired now because Dan took him out to spend some of his gift cards. He got guitar hero for Wii and he and Dan played for awhile. I think he wore himself out! He is starting to get that yucky bone ache that I remember from years ago, it's the steriods. He also has that steriod look, his face is getting alittle puffy and he has purple rings around his eyes...poor guy. He is getting 2 shots a day and taking 17 pills a day. Even though this phase has no hospital stays it is still a hard one. I guess that's all for now. Let me know what you think of this blog thing, you can leave comments whenever you want and there is a link to our christmas photos. as I figure this out maybe I can make it better.
Gotta go, love Jed and Kristin

HELLO EVERYONE~! Well as you can see we have moved. The hope is this will load quicker and I can arrange things differently. I guess we will see! Let me know if you have any ideas or comments! I am working on getting everything set up and the photos put up, somehow!
Love, Jed and Kristin