Hi. So our first full day trying to absorb the reality while also trying to enjoy every second, even if it is just watching him sleep. He did sleep most of the day today. He was put on a fentanyl drip. It took most of the day but I think we are getting close to knowing what the dosage should be. Of course, I guess as he gets used to it we will have to increase the amount. You can tell when he needs more or the base line rate is not enough because he is restless and will moan a lot. His pain is pretty severe. His stomach is bloated which causes his rib pain and then there is just the all over achy pain. We will continue to monitor and make changes as his needs increase. He was awake this evening a bit. When I say awake I mean he answered yes or no questions and asked for a drink. I want him to rest but I want to hear his little voice too. I am ok as long as I don't think too deeply about how bare and stark and gray life is going to be with him not there. I really feel like maybe all will be ok, maybe he just has a bug and will get better soon. Of course then the hard, completely incomprehensible reality hits and the wind is knocked out of me. I tried to look at some recent pics of him, ones from just a week ago..I can't do it. I can't explain the feeling when I see how well he looked and how he was smiling and then put it together with the fact that soon he will be gone and I will never see him again. I cannot process it. So I am not going to. I am going to keep doing what I do, what I have done forever, take care of Jed. He is here, with me, right now and that is where I need to be, right here, right now, with him. I know every parent loves their child but by 12 they are doing their own thing and you are not together as much as you were when they were babies. Jed and I have have never really been apart on a consistent, regular, daily basis. Will he be ok without me? who will take care of him? Will he be scared? Will he be as devastated as I am? Just the thought of him needing me and I'm not there is enough to make it hard for me to breath. I guess I have to go with the idea that he will be safe and happy and healthy. I want Renee to come get him when he is ready. My best friend can then take care of him for me. I wish I had that deep unquestionable faith that others have, but I don't.
I still don't' understand how we got to this place, it was not supposed to end like this. This is all wrong, just very wrong. I swear the reality of it is just so stark and bleak and incredibly horrifying that I think this is not really true. Please, it cannot be true.
Jed is lying here next to me snoring away under his oxygen mask. And so I am going to go back to what I do, back to what is familiar. Taking care of Jed, watching counts, waiting for white cells, and planning when we will go home. Only this time I never want to go home, this cannot end, it just can't
Love to you
J & K

The blog entry I never wanted to make. Yesterday Jed had a bone marrow aspiration. We got the results last evening. The cancer is back in his marrow. We are devastated. Because of the infection in his lungs receiving more chemo would just be torture. I have decided to stop all cancer treatment and make him comfortable for however long we are lucky enough to have him. He has fought a long brave fight and deserves to finish this battle with no pain or fear. He is awake and alert a very little bit. He did talk to Danny and I over night, just answering yes or no or asking for a drink. I am not telling Jed that we stopped treatment. If he asks me I will tell him that we are trying to fix the infection and make him feel as good as we can....end of story. I see no reason to scare him. He is starting on a fentanyl drip sometime today. I know he will wonder what's up with all the visitors he will be getting. I have told him everyone wants to see him for New Years. He is very aware of how bad the infection is. If at some point he starts to really ask me questions I will answer them as honestly as I can. I know so many love Jed and we are grateful for that. You may visit but I am asking everyone to please control their emotions while in his room. I do not want him scared or worried about others. I am sorry many of you are finding out this way.
He is such a good boy, so sweet and loving and so very tough. I cannot yet even think about how I will live without him. I can't imagine a world without him in it.
Thank you all for the many years of love and support. It has meant more than you could know.
Love J & K

The only real news I have is that the ECHO was fine, his heart looks fine. He did his inhaled antibiotic and the white cells are to be here tomorrow. The point of the white cells is to give the meds a big punch and help them make a dent in this crap he has.The infectious disease resident was here for the "consult". Those of you that read and remember the "yay, you have pneumonia" incident..well she has now rotated to infectious disease. She walked in and said HI guys I am your infectious disease consult...of course you are. Jed stayed sleeping. Smart kid. Anyway, the attending is to come by tomorrow. physical therapy never made it here. Rachel thought she saw a note in the chart but if they came up and wrote a note they never came in the door. Maybe she saw the note from pulmonary or the echo people. Who knows.
He is sleeping now. It has been 2 1/2 hrs since he had Tylenol and his temp is still 40.8 (105) nice. WTF. It went down to 38 .8 (101) for a bit. This fever stuff must be stopped. I am getting ready to start screaming.....WTF... get rid of this crap and fix him. This crud is not going to get him, no way. We are going to transplant in Feb and he is going to be on the road to healthy by the spring. I refuse to accept anything else. SO lets get the show on the road people.
Thanks to everyone that sent gifts and cards. If I haven't mentioned your gift I'm sorry, we might not have even opened it yet. He has not been up for opening gifts. But we do appreciate everything everyone is doing. Thank you.
Trish and Pete..thanks..I am burping the tortilla soup. :) So glad to see you and I don't know what I would do in here without you guys.
Ok, gotta go, tomorrow is a new day...just have to get through tonight with minimal incidents. He cannot stand up at all now, I could not even turn him to get him on the potty. Poor guy. It's much easier with 2 people. Danny was here today and into this eve. Mom and Savannah will be here tomorrow morning and Danny will be back in the afternoon. Think I will just stay awake until they get here.
Love J & K
Oh and his eye site is still horrible, especially when he wakes up during the night. I am leaving many lights on now...might help..maybe

Hey all. So after a pretty crappy weekend and a long night last night we have a tentative plan as to how we are going to fight this fever problem. His chest xray from yesterday looks worse than the week before. They are not sure what is in there. Last night his heart rhythm was fast on and off, could be due to fluid built up around his lungs so he will have an ECHO today to see what that is about. He gets his inhaled antibiotic to fight and stave off pneumonia. Physical therapy will be in to set up a treatment plan because he cannot stand up. I have to pick him up, his legs are so stiff and sore. Infectious disease is being called in for a consult, maybe they will see something we are missing. The blood bank is being called to set up donors for white cells. It is done in Phillie and if they can coordinate the donors it could be here tomorrow eve. He needs them to help him fight whatever is in there. At some point I think the eye people will be back in to check things out He also is getting more red cells and platelets today. Thank goodness these tests only require him to lie in bed. So that's what's up for now. I will keep you posted as to what happens with each
0f those things.
Love J & k

Hey. Well the MRI was "clear of any abnormalities". That is good. The hope is the vision issues are med related and will clear up a bit as meds change. I really have no clue and it seems no one else knows either. He still can't see well. He holds his eyes wide open to try to see. He seemed better today over all though. He is on oxygen now..he hates it but is being very good about it. Jamie clipped off the little prongs so they don't go up in his nose. He disliked those very much. He is a bit more tolerant of it now that they are clipped. He was awake and talking today. Has a few fevers, we are still struggling with those. Changed some antibiotics around again. He got a ton of blood products today and he was very good when his nurse had to change the dressing because of the bleeding.
Geeze I must be very tired, I keep falling asleep while I am writing this!!!! But he just got lasics and will be peeing a lot soon. Can't sleep later because when he says mom I have to pee he means right now! He cannot stand up unassisted but he will try so I really must be awake! Ok, to wrap up before I nod off again, he looked better today, for a bit. With Jed though you never know what is going to happen the next day....or even in an hour! The main focus right now is to get rid of these fevers...that means he will be rid of his infection but his eyes really freak me out. Not even his eyes just he way he looks around like he is trying to see something specific. Hopefully we can work on that too. Poor guy, he is really brave.
Ok gotta go Love J & K

Hi. I hope everyone had a nice christmas. We will have ours when we get home. Jed opened a couple of gifts today but was too tired to do anymore. He also was having trouble seeing, that made unwrapping difficult. Mommo was here and again did my laundry. I can't leave him alone for even a minute. When he wakes up and has to pee he has to pee NOW! He peed a lot today but he still looks puffy to me. His belly looks big. I am not sure what that is about.
Last night Jed slept for almost four hours ..the entire time he moaned and held his breath. I spent the whole time saying BREATH every time he held his breath. When he did wake up much later he needed to pee. When he sat up he asked me to turn on all the lights, I did and he said "no all the lights". I told him that all the lights were on..he looked all around and then said "oh no then I can't see". it was the most terrifying moment I have ever had up here. I quickly blew it off and told him, don't worry it's just meds and we will fix it. As he woke up more he could see a bit but not much. Today the eye guy came in to examine him. The vision in Jed's right eye is almost nothing. his vision in his left is pretty poor. They sent us down for an MRI. He was going to be sedated so I figured it would be a great time to change his access needle. The anesthesiologist did it. after the MRI they noticed that his port never stopped bleeding. He woke up and they were playing with it trying to clean it up. Needless to say he started yelling for me. I was so upset, I had scheduled all this to relieve all the stress but now it was just as bad and people he didn't know were touching it. Thank God Jamie came down (our nurse). she stayed more than an hour past her shift to help Jed and clean him up. The bleeding seems to have almost stopped but he has to have the dressing changed again either tonight or tomorrow morning. Our nurse tonight is "Nacho Cheese Jen" so she will do it for him before she leaves in the morning.
Another eye guy just came in and looked in Jed's eyes. No results from the mri until morning I guess. I don't even want to think about it, makes me sick.
Danny was here for the MRI, he just left a bit ago and will be back tomorrow.
I will keep you all posted...oh and he is still having fevers so we are still battling the fungal infection and they added an additional antibiotic..just in case! THe Dr on up here this week has been Dr. Griener..did I mention him before? We love him...just a really great guy. I am so glad he is a new addition to the team.
more news as I get it. cross your fingers everyone. The eyesight thing is pretty scary.
Love Jed and Kristin

Hey..Boy Wonder and I say Merry Christmas to all of you from here in the Bat Cave. I have to say it has been a rough few days . We got some very good news tonight though. They identified the fungus in Jed's lungs. Turns out this type responds better to a different anti-fungal that has barely any side effects so tonight was the last dose of the crud! YAY He will start the new med tomorrow. Can't be soon enough! He was almost comical tonight. To counter act the effects of the crud drug they gave him a few big doses of Demerol. He was so high tonight we was mumbling away then he would say stuff like, I caught that blue heron, the dinosaurs are here, hey look there's Pompeii, that guy owns a battle ship, you should sit on the porch and turn out the lights. Lots of fun! The sad part was he was moaning and shaking the whole time. The Demerol helps but does not take it away. It is exhausting. Danny was here tonight to help me when Jed said, very clearly and with much noise, I HAVE TO PEE. Now last night he said that and it was just he and I. I got him off the bed but he took 2 steps and couldn't see anything I was holding him up and trying to get him to the bathroom. He got right in the door and would not let go of the rail. He watered the whole bathroom! Then I couldn't get him out and back to bed and all cleaned up. I had to pull the cord in the bathroom! never did that before. Amanda came in, in all her calmness, and helped me get him cleaned up and back to bed. what fun that was! Tonight Danny was here though, still messy but WAY better than doing it alone! He is resting comfortably right now. He will be getting up to pee more than usual because he was given a diuretic. He has gained quite a few pounds of fluid weight the past few days. Today I could swear he was puffing up as I watched. I am hoping getting rid of some of this fluid will help him breath better and in turn help get rid of the headaches he is having. I think we have turned a corner....but then I always think that! i really feel that in the next few days he will start to feel better and in a week or so show some white cells. I am ready!
Mom Adam and Savannah were here today. Jed was awake, exhausted but awake. It was a good visit. Mom did my laundry again! Savannah gave me a framed copy of the only picture I have with Renee. It was sweet but god I look horrible! anyway she also gave me a print called Pete and The Bird Girl by an artist named James Dean...really. He paints his cat Pete in all kinds of places. When we were in Savannah, Ga I bought a print of Pete driving a yellow vw bug. I just love it..and I am not a cat person. Go to Petethecat.com..he is very cool!
Sooo anyway here we are, everything seems calm. Danny brought up a few of Jeds gifts but left the rest home. Everyone is waiting until we get home to open gifts. Mom brought Jed a tree the other day, did I mention this? Well too bad if I did. It is so cool everyone that comes in here is in love with it. It is completely decorated in blue and white with a penn state snowman on top! It's awesome.
THe Althoff's stopped by tonight with a bag of gifts for Jed and a gift card to ebay for me!!!!that was so way nice! Speaking of very nice, a girl I went to high school with came to the rotunda and brought me a bag with tea and cookies and honey, a bag of stuff for Jed and a card with money in it to help us out during this struggle! It was money donated by former classmates! I am so grateful and amazed.I know people are struggling and for them to help us is just so wonderful. Jed and I have always said, of course we would change all this if we could, but we cant so we have to take to good out and focus on that. The good is always the wonderful people we meet that help to get us through this. We have been and continue to be very lucky.
that's all for now, Merry Christmas to everyone..and ...always.......thanks for the love and support
Love Jed and Danny and Kristin and Savannah

One more dose of crap finished. Today they pre-medicated him with Demerol. Then stopped the drug at the halfway point and gave him more demerol. He did start to shake about 15 mins after that but when he was given another dose the shaking slowed down and of course he threw up. We think the dose in the middle needs to be a little higher and that might fix the problem. Dr. Griener [sic], said that it seems people tend to acclimate to this drug and each dose could be easier. That would be great. The fact that his fever curve was noticeably better today, we are hoping, means that this drug is working, even with just one dose. Some of the nurses are starting to complain about the fact that he only has 1 line. With all these drugs they really have to shuffle to find the time to get them all in. I guess the broviac is in the not to distant future. Big John seems to have quieted the terror that subject brought to Jed. He still is not pleased and I know for a fact he is only going to let certain nurses do the dressing change but I can't see that that will be a hard thing to work around.
Right now though we need to curb the throwing up. It is from a combination of everything I think. Fever, fungus, drugs, you name it and it could be the issue. At this exact moment however we are working on trying to find where the blood in his vomit came from. God, that sounds gross. He threw up all his pm meds and there was blood too. I am thinking that everything has to be irritated, he's been heaving for days, worse today. I think the dr fellow guy is trying to work with the nurse to find time to run a bag of platelets. I also wanted the zantac IV but I'm assuming there would be a scheduling prob.
That is where things stand right now. Unless there is some huge miraculous recovery by Thurs. we will be here on Christmas. We will make it as good as we can and do the real thing whenever we get out!
I have been agonizing over this subject for awhile now, visitors. I know there are benefits to both, a fresh face to talk to when people come and less chance of catching something when they don't. As of right now I am going to have to go with playing it safe. I know many people want to see him over the holidays, and we want to see you, but I am asking that no one come until he has a white cell or two. I don't want anyone to be upset I just want him to get better as fast as he can without catching something. Also there is the fact that he feels horrible and would not be good company anyway! I hope you all understand that I am just trying to keep him as safe as possible. Thank you for your constant support and love.
Today looks a bit brighter than yesterday or even this morning. Small steps is what this is all about. Jed just seems to work on the 1 step forward and 3 steps back plan. But if that is what it takes then that is what we will do.
Again, thank you for all the help, love and support. We NEED you all and appreciate everything.
Love Jed and Kristin

It just keeps getting harder and harder and he just keeps going. Not even water is staying down right now. Just what he needs something to make him even sicker and weaker. I am unsure how many doses he will have to have of this stuff but they made it seem to me that it is like a round of antibiotics...way to many doses. The thing is though, the fungal infection is terrifying, we MUST get rid of it and they said this is the drug that will do it. So once again he is doing something that makes him feel horrible to try to make him better. Really just a complete nightmare. I don't understand.... I just don't. I want to skip ahead to when I am worrying about curfew and homework and driving. I want to get to the part where we walk into clinic and no one recognizes him because he is big and tall and strong..with a lot of hair! That is where we are headed..just have to help him though this nightmare first.
Love J & K

Right now all I have to say is Abelcet sucks....bad...chemo bad.
oh the joy
more later

Hi all. Stressful day here today. As you know Jed has been spiking fevers for a couple of days now. The fevers continue., He gets a short amount of relief from Tylenol but then his temp goes right back up. He had a CT scan today. He was given anesthesia and intubated. The scan showed some small fungal nodules in his lungs. The fungus is what is causing these high fevers. So here's what is happening: he is to get a different anti-fungal (Abelcet). Don't look it up and read about it. The side effects are crappy. We had this med hung and ready to go but he was having trouble keeping his blood pressure up. That sends me into panic mode. Low blood pressure sends you right to the PICU. They gave him a bunch of fluid and then started to run a bag of blood. His pressure is still very low but holding. As of right now we are safe here. SO his problems have been high fevers, with chills, and low blood pressure. This med he is going to get can cause...high fevers, chills and low blood pressure!!! Ta-Da. Beautiful. If Jed starts to have the shakes and chills he will get Demerol, which calms those effects. Nothing to combat the blood pressure issue though. Right now he is running between 82 over 47 to around 87 over 52.. The 87 over 52 is fine. He runs that low when he is all full of meds and sleeping . Before the fluids his bottom number was 32-37...I don't remember what the top number was. I only usually worry about the bottom. As long as it stays around 50 I will be happy. His temps today were any where from 37.8 (100.04) to 41.8 (107.2). He is sleeping on a cooling blanket ..not too happy about it but tolerating it. His blood will be finished in about an hour. Just now when we sat him up to take his tylenol I had the nurse look at his eyes. They are so red around the inside edges, almost bleeding. Low platelets will do that. Needless to say he is going to get platelets too. I am not sure if they are going to run the anti-fungal or the platelets first.
What we want to happen is that after 2 or so doses of this anti-fungal crap he will start to feel better. of course he will still feel rotten when he is getting the med but better in between.
My hopes for Christmas keep getting smaller. Now instead of hoping to get out of here for the day I am hoping he feels well enough to just be awake here and open some gifts. We got all the ornaments for the nurses and staff up here finished and the snow globes for the fam but we have not gotten the ornaments for clinic finished yet. I would do it for him but I know people want ones where he has written his own name! So clinic friends you will prob get yours later!
Just a little weird info...his nurse all day was named Renee...his nurse tonight is Kristin.!! Neat!
Carol, the nurse from OR South that takes care of Jed for spinal taps and bone marrow aspirations, stopped in here today to give us..I mean Jed, a bag of cookies she made. Chocolate chip and these little Italian cookies with icing....OMG I am going to eat cookies til I puke tonight. I feel myself expanding with every passing moment! Yesterday I got a tin of little cookies with Reese's peanut butter cups in them........they are all gone and I didn't share. Thanks Cathy! Thanks Carol!
Platelets are here, so onward we go. I will let you all know what happening as we move forward through this ...little hard part. THanks for all the comments and notes of encouragement. When he is awake I read them too him..when he lets me!
Love Jed and Kristin

I don't know why things just can't stay boring. The fevers started yesterday eve about 5pm. They return every time the Tylenol wears off. He is currently at 4o.8 (105.4). He has ice on his head and we are waiting for the newest does of Tylenol to kick in. They put him back on vincomycine last night and this eve they increased the frequency of the doses. Fingers are crossed, now it looks like even our 1 day at home for Christmas is in peril.
Mommo and Hop were here, he was awake and chatting some with them. Mommo got my laundry washed for me :). They brought him a tree...all decked out in Penn State Christmas stuff! It is a mini of the tall one in the lobby. it's very cool!
We are currently working on the 1 step forward -3 steps back method.
Not really a fan of that method, but that's just what it is at the moment. waiting for them to come retake his temp. I usually sneak into the hall and steal the first thermometer I can find. I just looked, they must all be in use. We have an oral one in here but I don't know how it works and when it beeps and Jed realizes I am fumbling with the buttons he will tell me to sit down and wait for a nurse to do it.
Ok, it's going down..slowly. 39.6 (103.something)
Guess that's it for now. Boy wonder has awakened and is watching Family Guy. Counting down the minutes until his next dose of morphine.
Love Jed and Kristin

Hey all. Thanks Johnny for the info about John's world!!! you and the cat can stare at each other through the window! Yes I definitely think we should become DMV workers. I heard somewhere that all hired at York DMV have a disability of some sort...mmmm, I think I could meet the requirements.
Jed is ok. sleeping. He will probably sleep all day. Yesterday was busy and stressful so he is worn out. Unless something crazy happens we will be coming home on Christmas morning for the day. He can't be gone longer than that. He is not happy. He wanted to wake up in his bed on Christmas morning. Me too. :( At least we get the day. I guess that's it. Not much happening. A lot of snow.
Love J & K

Fwd: Multimedia message

Jed making snow globes!

---------- Forwarded message ----------
From: <7173649416@mms.att.net>
Date: Sat, Dec 19, 2009 at 10:30 AM
Subject: Multimedia message
To: cancersuckskdsj@gmail.com

--
www.bigjedsworld.blogspot.com

Hey. So all is really the same. Jed played bingo in the playroom yesterday for a bit and he got some blood. His hair is really falling out, it's all over the place. He refuses to let me shave it..I don't think really want to anyway.
We are still just hanging around waiting for counts. His marrow is just so tired! Our hope has gone from being home for a week or so over Christmas to trying to have a pass from Thursday afternoon to Friday evening. That is the hope. All Jed really wants is to sleep in his bed, without a needle in his port and eat Christmas Day brunch and hang out all day at Mommo and Hop's. He keeps talking about Buckwheats...when I ask what he wants, that is all he says! So anyway..we are hoping. The plan of an open house is off. There is no way he will have counts high enough to be around too many people.
I feel like we are just floating in limbo. God knows that we know the drill and we know that everything hinges on his blood counts...at least the timing of things anyway. I will feel better when I have more concrete info and a PLAN in hand! Everyone keeps asking what happens next...I really can't answer that yet.
Dr's here. gotta go
Love Jed and Kristin

Today was Santa day..Jed was just too cool, when they asked if he wanted a visit from Santa..he said "I guess"! When they asked if he wanted a picture he said, no thanks! I said Yes, thanks!
Hi all. We had a nice day today. Nana and Savannah were here. They brought 2 big bags of stuff from the girls at The Pride! Awesome stuff! All the coconut smelly stuff that I love...fluffy socks and a snugglie...money and socks for Jed.
So very thoughtful. I can't thank ya'll enough...awesome.
Jed and I had Pizza Hut delivery for dinner...yum.
The Althoff's came for a bit and so did Mr. Phillips and his wife. It was a nice time..oh Santa stopped in too. Brought Jed a puzzle and a gift card for toys r us. counts are still the same. So we are just waiting for those pesky white cells to grow! That's about it. Nice calm day. No drama!!!
Love Jed and Kristin

Bone marrow is CLEAN!!! nice and empty, no yucky cells~ YAY
Now we can decide what the next step will be. As soon as I have some more Info I will let ya'll know about it. Right now we are still doing what we have been doing these last 3 weeks since chemo finished....waiting for counts. We do think we have a reason for those super high temps and the rash he has. It seems the tests they did to look for viruses came back showing HHV-6 (I think that's right) anyway he was positive for that virus,,,it causes roseola!! Tomorrow we will get results for another viral test, that will tell us what the levels are for the HHV-6. I am glad we have an explanation..that could definitely be part of the problem with his counts not recovering.
Now we are waiting to hear what our next step is....and I am trying to convince Jed to shave his head. This is the 1st time I have not been able to talk him into it! He is shedding everywhere!
more info as I get it
Love J & K
Today was Our friend Thomas' Re-birthday! We hope the transplant went off without a hitch...good engraftment and quick recovery!

Bone marrow test tomorrow. The results will determine where we go from here.
I'll let ya know.
Love Jed and Kristin

http://thon.org/families/meet_the_families/family_facts/smith
The link to Jed's page on the THON website!

Jed with his Target popcorn


.................
.
Big John and Jed strolling the hall

Hi all. There really is not much to report here. Yesterday my parents were here for the afternoon. Danny came up later for a bit and then Big John was here. He hung out and then did our walk in the hall with us. Jed really seems to like him and the fact that he knows what Jed is going through and what he is facing is good for Jed. Today has been very quiet. Jed has been sleeping ALL day. No fevers, I was worried about that but so far so good. I think he wore himself out yesterday. He will probably get blood or platelets or both tomorrow. His counts are not recovering yet. Dr. Neely was here today. He said that either there are cancer cells in there messing up his counts or that week of chemo REALLY knocked out his marrow...if that's the case I can't begin to imagine what is coming. He has a bone marrow aspiration on Tuesday so then we will know what is happening. (hopefully) He is starting to get upset. He has been very good through this so far and I have been amazed, but with Christmas fast approaching he is getting worried that we will be here for that. Me too. I don't want him to have to deal with that. Thanksgiving was hard enough. He will be a mess if we have to stay over the holidays.
He was pretty perky until today. He woke up to take his morning meds and then to pee but after that he has been sleeping ALL Day.
that's about it. Teresa was our nurse all day again, which is great. Don't know who is coming on now, I guess I find out soon!
Think I'll go now, not really anything to report. If there is I will let you know.
Love J & K
All of our love, good vibes and strength to our friends in Texas. Thomas is headed to transplant on Tuesday. We are thinking of you guys and sending love. By the spring Thomas in Texas and Jedediah Thomas in PA will be starting fresh and new and healthy.

Hey all. So, lets see, what is new? Yesterday my mom came up and I went to York. I had to get my picture taken...remember I tried to a couple of weeks ago but the DMV is closed on Mondays. Not just holiday Mondays, ALL Mondays. Anyway, I got my picture taken yesterday then I had some time to kill before I had to go BACK to the DMV for my "special points test". I was freezing because I had no coat...wasn't too cold when we came up here on November 16th. I went home and got my coat then met dad for lunch. Actually I ate, he hung around..he had just been there and eaten! One of the very nice ladies working there bought me my lunch!! Thanks! After I ate I went back to the dmv. My appointment was for 2pm. The paper said get there 15 mins early. I got there 20 mins early. When they finally took me back to a little room others starting streaming in. The test is 20 questions, you can get 6 wrong...yes I said 6...I thought the guy was joking..nope. It took me 6 mins to finish the test and I got none wrong. I was finished and leaving and people were still arriving. Telling time seemed to be an issue , the guy giving the test was very patient. I wanted to scream and I don't work there. If you want to feel like a genius hang out at the DMV for a little bit. Where do these people come from? Why are they all at the DMV? So that was my fun day at the DMV. My license is now secure....if I can stay under the speed limit for a year....oh god a whole year. I rushed back here (staying close to the speed limit) and all was well. Mom had it under control of course.
Today was NOT a fun day. We had waited until today to have Jed's port needle changed for 2 reasons. First I was not here on Thurs and either was Amanda. Amanda was here today. Jed loves her and trusts her. We love most of our nurses but there are some we just feel closer to. I know you all know how Jed is about his port..it is always a huge drama. Having amanda up here has eliminated a lot of the terror he has. When our nurse walked in this morning it was NOT Amanda. I understand that they have to assign nurses according to work load so I was not all that worried about it. Amanda has done the needle change quite a few times and has not always been our nurse. Whoever we have always just says "not a problem, if Amanda makes Jed comfortable I will get her". Not the nurse we had this morning. She took it very personally when She came in with all the needle change stuff and Jed asked for Amanda. She told him it's me or the IV team. WTF. For the 1st time in almost 8 yrs I went to the charge nurse. Now this nurse we had, she is very competent and capable but this had NOTHING to do with her and her abilities. If her reaction had been more professional and more centered on Jed and not her ego I would not have gotten as upset as I did. He reaction was what set me off. It was unfair to Jed and really just mean. After apologies from her and some discussion she did end up doing the change later in the day but all the crap we went through was completely unnecessary. We used to go to clinic, now evidently we are not allowed to do that and we were told that none of the nurses would come to Jed. I know they are busy. So anyway, I was fed a lot of BS today about scheduling and so on. Jed was calmer and did ok so I went along with the BS I was fed. I don't want to make his time up here harder by bitching. There is a fine line. So the day was filled with drama and tension ....completely unnecessary. This nurse loves jed, I know that and he usually really likes her so I am trying to keep my feelings out of this. He seemed to forgive her, he knew when she was saying crap that was untrue but he let her slide and they talked about stuff that he likes and he was ok. I took my cue from him....but there is only so far I am willing to go and I hope now she knows that. She is the ONLY nurse that I seem to have an issue with. This is Jed's ONE main issue, why not make it as trauma free as possible, why make is so much harder?
Anyway, we made it through that drama and then he had a reaction to the IVIG he was getting. It can cause severe bone ache and chills....it did. He was also due for morphine. I asked her to stop the IVIG and give his morphine. First she told Jed she could not stop it and he could take the oral...he told her that is not strong enough and will not help..she said 'well it's better than nothing". She left the room and I followed her, many people were around when I said "how long is this going to run? He is in real pain, this is not a ploy to get morphine" . She did say then, 'I'm going to stop it and give his morphine and then slow the rate down". Now why not say that to begin with? or say, "Jed I will go find out right now how we can stop this pain". She did take care of it but her 1st reaction was... take the oral or nothing. I know I am tired and sleeping 2-4 hrs a night doesn't help my disposition but today sucked....and it really didn't have too. All the explanations I got I completely understand and also know that some of it was just plain bs. Jed is sleeping comfortably now and we had one of my fave nurses from 7-11, which helped me calm down. i am not sure who is up next, there are a couple with the same name!
Tomorrow is a new day....if there is an issue I will probably not be nice...I am almost to my breaking point. The only thing holding me in check is that I am following Jed's lead on this. I also don't want the personality conflict that I seem to have compromise Jed's care up here.
I have a raging headache and I really would like to drink a couple of my brother's special bushwackers and then sleep for a solid 12 hrs or so. That will be a long time coming..that's ok though we have other stuff to do right now!
OOO, carol is here, she is DEFINITELY one of my faves....oh, she is just helping out our nurse, but I don't know who that is yet! I hate weekends up here.
Now that I have whined and complained and moaned and rambled I have to go!
I just found out who our nurse is. We had her last night and she is great, I actually slept about 4 hrs! Glad she is here tonight.
Love Jed and Kristin

Hey. I need to say a HUGE thank you to Lion's Pride Restaurant..employees and customers. The money you have collected for us over the past few weeks has been invaluable. Thanks to all of you we didn't have to choose between paying bills and buying the kids Christmas gifts. This is going to be a very hard journey and having friends like all of you behind us will make it easier. Thank You Thank you! I hope you all have a great holiday. Whenever we get home and Jed is up to it we will be in...he misses his shrimp basket!
THANK YOU
Love J & K.....................JACKIE YOU ROCK...:)

hi all. Well it has been an interesting couple of days. I guess I only missed updating last night. Ok, lets see. Monday was good, Eat'n Park cookies and all that. Early Tuesday morning Jed had a fever of 104. Tylenol took it away until about 3pm. Since then the fever has returned every time the tylenol wears off. He was down to 1 antibiotic now back up to 3. All the cultures have been negative so far. They scheduled a bone marrow test for Tuesday. That's good. I want to know what's going on in there.
When he is awake he talks so much and so fast we have to tell him to slow down and breath!! oooo he gets mad when I do that!
I guess that's all for now. Danny has taken a half day at work the last 2 days, today he is working all day.
I will keep you all posted on the fever situation. I just want to be home for Christmas...for Jed
Love J & K

Hey all. Well not too much to report, everything is pretty much the same. He is walking more, went to the playroom today to decorate Eatn park cookies. Lucky me! I can feel my butt expanding as we speak.
His counts are just not moving. we upped his dose of GCFS this eve. (that's the drug that boosts his counts) Jed calls them fake counts. The Dr doesn't think it will make a difference but it won't hurt him. So we wait. I am just worried that there are nasty little cancer cells in his marrow screwing with everything. There really is nothing else happening here. I just want his counts to do something.
I just did all my Christmas shopping for the kids in an hr from right here on the bench! A credit card from Dan and an Internet connection...I got it covered.
Will we be home for Christmas? I sure hope so. I really would like to have an open house kinda thing so everyone that wants to see Jed before transplant can come by. I guess we shall see.
I guess that's it. Oh, the jackhammers were back again today...please no more I have had enough!
Love Jed and Kristin

he always does this when he gets cephepime according to him it smells like cat pee


The king of the DS


Jed and his door!! Some of his faves..Simpsons, Stewie, Bender and Penn State!!!!

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Hey all. Just when I start to think that the depth of the tragedy happening in here is more than I can handle wonderful people remind you that there are many success stories, and many people to help us through this. Trish visited today and I got a chance to hang out and talk to her...away from Jed. Deana joined us for a bit, it was very nice. Like normal people talking, well until you hear the topics! This evening Big John and his friend (name slips me right now) came by and spent over an hour talking to Jed. His friend is a camp counselor at the cancer kid camp Jed attended 2 yrs ago. Big John is also a counselor but even more impressive is he is a cancer survivor. He had 2 transplants! I REALLY think this visit has helped Jed with the whole broviac thing. Big John talked to him about it. It seemed to calm his panic a bit. Such a selfless thing for this young man to do. I am very appreciative for the time he has taken to help Jed. He is married to one of our nurses, who also has survived transplant twice!
Today has been a pretty good day. Thank you for all the cards and the comments on here. It's nice to know there are people out there. Thanks to the people that have sent Jed stuff. It's very nice. Jody, the stuff you sent was great! laundry detergent pack, quarters for the vending machines, hand lotion, etc...all the practical kind of stuff. oh and of course the calender signed by your dad was SUPER rockin'! I have to say Dan and I were just as excited about that..if not a little more.. than Jed! Thank you so much for keeping Jed in your thoughts.
So yes, today was a good day. Jed was awake, talking and he walked the whole hall, he ate a little bit & we had some very nice visitors. Hi Denise. Danny was here too. Thanks honey and don't forget my window markers tomorrow!! Poor Dan he not only is the only one working he gets to be the errand boy too. He is very good at it!
Right now he is hosting a canning trip! There are a bunch of college kids in my house, besides my own. They are all headed out to brave the nasty weather tomorrow & raise money to help kids with cancer.pretty awesome. My mom made them lasagna and brought over other food, Grace and Danny and Savannah cleaned the house. They are fine hosts and hostesses!
Cross your fingers for an upward movement in Jed's counts tomorrow. Getting home by next weekend would be great! i do have a few things to do to get ready for Christmas!!!
Thanks again everyone.
Love J & K

Hey Trish, thanks so much for the food! And thanks a huge bunch for the cleaning supplies. I want to break out the mop now but I am going to keep it clean and pretty until transplant! Thank you Thank you!!! So wonderful to see you today.
Love J & K

HAPPY BIRTHDAY TO MY MOTHER!!!! yay MOMMO!!!
I am hoping Adam made you a cake!!! if not I will......buy you one when I get home!!!
Love J & K

oohh, hear that?? That is me singing happy birthday to you!

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coco puffs! getting better everyday. Walked the entire hall today. I didn't make him go out this eve. There is a family gathering in the hall, I am pretty sure it's for a goodbye. Even before the people started to come you could feel the air in the hall change. No matter how professional they are you can also tell that the nurses are very upset. We are hiding in here.

Love Jed and Kristin

Hi ya. So we had a very exciting day. Jed has been awake since the jackhammer started outside our window at 7am. I was thrilled when the rain started and they had to stop! Casey came today. She and Kevin drove up. Hershey med is one of his clients so he "worked" while she chatted with us. It is the first time we have seen each other in 7 yrs. Just a note to everyone....friends are too important to let stupid crap come between you. Jed talked and talked and talked! He doesn't remember her..that makes me sad. Her daughter Autumn is exactly 1 week older than Jed. We have video and pics of the 2 of them in the bathtub at my mom's when they were about 18mos. Blackmail material. So anyway she was here for awhile and danny came. Then this eve Joe and Debbie Althoff stopped by. Hayley and Ashlyn could not come because of the over 18 visitor policy.
Denise, our lovely former housekeeper here on 7west stopped by to see us. i know it was a very hard visit for her. She knows all of us well. We come, we go, good stuff and bad she sees it all. Thanks for stopping by.
Jed ate some cereal and some yogurt, starting to see a pattern with that!
His white count went from >.1 to .1! He got some more platelets today because they keep falling. All we are really doing is what we always do...wait for counts. As soon as he is eating more and as he walks more then the meds will slow down and go away too!
hey, did you know that there is a special poison control number for dogs? Savannah called me this morning saying the dog ate a bag of pistachio nuts..big bag. I called Dan, he said call the vet, the vet said call this special poison control number. I called and there is a recording in the beginning saying they are completely funded by donations and a $35 fee is charged and will cover consultations with our vet etc . When I got a person on the line I told her I just wanted to know if pistachios were toxic for a dog. She said I had to pay the fee for the info. I was going to say never mind but I figured if i did the dog would die and Danny would say "why didn't you spend the $35 to help save him?"......so I paid the fee & she says..ok, pistachios are not toxic but the volume he ate is very damaging. He needs his stomach pumped!!! Danny and Mom were voting on our contract, Savannah was in class so mom had Dad stop by to check on the dog...he was fine. Danny went home after the vote to take the dog for the stomach pump and the dog was playing, jumping around and eating his dog food!!! Turns out that in her panic Savannah thought he ate much more than he did. Woo what a relief. Never a dull moment in our house, even when half of us are not there! Can you imagine how much it would have cost to pump the stupid dog's stomach..oh my just what we need with the threat of losing our jobs..a stomach pump for the dog
Thanks again to all the people helping us. Lion's Pride restaurant and it's customers have helped us so much these past few weeks. They really saved us, with Danny being laid off for 2 weeks and I am not getting paid the help is super nice. Especially since I know everyone is struggling. Thank you VERY much.
Thanks for all the cards for Jed and all the well wishes. Savannah said there is a box at home from Perewitz motorcycles Jed is excited to see what's in there! Me too!!!
Hugs to all
Love Jed and Kristin

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I bought Jed this little soft Penn State football in the gift shop. I picked it up to look at it and it says "To Jed get well soon Danny Slatton" on the other side it says "get well soon Hop Pa"
Danny and Dad said it should go on the special shelf with the Joe Pa signed ball! What a couple of nuts.

Hi All. Well blood counts are not moving but Jed is! He walked half the hall today! He ate another yogurt and some coco puffs and is sleeping now. He was awake most of the day. He got his inhaled antibiotic that I had been pushing off. I just couldn't handle the fight the last few days. Today though he was well enough to push it! He was also to have his port needle changed but Amanda has off until Thursday. We are going over to clinic tomorrow so Holly can hopefully do it. The drama of the whole lead up to it just exhausts me. He is still talking about how he does not want a broviac. I can't say I blame him. I am scared to death to have to change any dressing..and it is an open hole, I'm sitting down and I feel like passing out. Of course when I talk about it with Jed it's all good. As freaked out as he is about it I am right there with him. The whole open wound thing with the tube coming out makes me lightheaded. Those of you that know me...you are aware it takes a lot to get to me like that!
Ugh, I just can't think about it.
Tomorrow is the contract vote at Harley. I would assume most will vote yes on the crappy contract...because we have no choice. Now I am hearing that within 2 years they will have scaled down to 800 full time people and 300 "casual" workers..whatever that is. Basically for us that means we will have no jobs. Losing 3 incomes in one family...kind of a big thing. Again, I can't think about it.
I just want Jed to feel as good as he can, come home and have a wonderful christmas that he will never forget. That's as far as I want to think ahead. Yes, I know, I am planning and figuring out all the little details of transplant life. But I won't let it be my focus. The fear is an endless dark place. I am staying away from that, it's a waste of energy and absolutely no help to Jed.
So important stuff, I am hosting a canning trip this weekend!!!Ok, Dan and Savannah are hosting a canning trip. So as you drive around, where ever you are, if you see someone at an intersection with Penn State on a can, put your change in it!!!
I guess that's all for now. I wonder if the guys using jackhammers on the concrete roof right out our window will start work before 7 again.
Love Jed and Kristin
Hey Beck...tomorrow will be fine....you will be fine!