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

042
Originally uploaded by buckley04@verizon.net

I have such beautiful children

Jed, as best man!

jed st john 001
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