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!

Hey. Definitely making progress here in the Bat Cave. Today mom and Dad were here. He woke up and talked to them. Grace and Jim came also. Jed was awaking and talking to everyone for quite some time. He took a nap for awhile and then woke up asking for his computer. He worked on his christmas list! Much better than last weekend, last weekend was so bleak and dark..not this weekend! He got platelets again this morning. His counts are continuing to fall. Waiting for counts to come up is what we do...and we are well practiced at it. The good side of that is the chemo is effective in his system. I always worry about kids who rarely have issues with counts. To me the fact that the counts fall and struggle to return means that the chemo is doing a good job. Maybe that's not how it is but it always feels that way to me. He is still not eating and still cannot stand up on his own but he is getting better. my secret hope is that because this is dragging on, maybe it will work out that our break between chemo treatments will be the week of Christmas. If we are home I am still doing our Christmas eve dinner I am just not going to cook. I will get stuff pre-made. Sam's club has awesome little appetizers. I love our Christmas eve. The deal is no one has to say they are coming and anyone that has nowhere to go or needs an excuse not to go somewhere comes to my house. You know..you don't want to go to crazy aunt melba's christmas eve so you tell her Oh I am so sorry I am already commited to going to kristin's that eve. Or even better this year, "oh, I really have to go to see Jed on Christmas eve, but thanks for the invitation"! see we come in handy! Last year was great we had 13 or 14 people which might not seem like a lot but my house is not that big. It was awesome. I hope we have even more this year. I guess I will have to move my treadmill out of the dinning room for the evening. I actually miss it...did I just say that? So anyway if you have no place to go on Christmas eve and we are not in the Bat Cave stop on by, it's crowded and crazy but fun and relaxed. you can come for 10 mins or a few hours. We don't care if you eat with your fingers or sit on the floor..it's all good at the Buckley-Smith-Slatton abode! I think Mr Jim is going to pick up our tree again this year. He usually takes Jed for me and they pick it out, bring it home and set it up. So I can decorate it. Mr. Jim has also hung the garland on my porch for the last 2 years. The tree has to be a bit smaller this year in anticipation of more visitors...and the fact that I get claustrophobic when the tree takes over the living room. I cannot wait to see my porch with the pink and white lights and bows, our sparkley tree and my dinning room...filled with pink and white lights, pink and green antique decorations and lots of gold beads and jewels. I guess the extent of my decorating will hinge on how long I am home before and how long I have afterward to put it all away. I better stop. I don't want to get too excited just in case we are here. Oh my, that would so suck. I know our friends in Texas will be in the middle of waiting for the pretty new cells to engraft so they will not only be inpatient they will be on isolation...that sucks. We will have them in our thoughts.
It would be nice to not miss Christmas morning at our house & especially Christmas breakfast at mommo and hops. Like Jed would say "HHHMMMM, buckwheats"! That is our traditional Christmas brunch. Well fingers crossed and if it doesn't work out that way we will make the best of it.
I have rambled on long enough. I have some stretching to do..trying to fool myself into thinking I won't gain weight...hhahaha. Where's the cookie I saved from lunch? Oh, crap I already ate it.
Everyday is a little better.
Love Jed and Kristin
Jed has decided that we are having Thanksgiving on St. John next year. That is our goal. I am having trouble convincing him that Eco-Tents are way cooler than a Villa! My brother has spoiled him & has taught my kid to like his creature comforts.

Hey All. So not much new here in the Bat Cave. Boy Wonder is about the same. No fevers, some nausea, and not as much belly pain as yesterday. He is still not eating, we are going to work on that tomorrow with some toast. One new thing, he seems to have developed a pain in his arm. I remember when he started relapse treatment last time he had these random weird pains. His wrist hurt for more than a month. He had it wrapped and would put heat packs on it. We even had an xray on it, nothing there. One day the pain was just gone. I am thinking that is what the arm pain is. Who knows what is going on in that skinny little body. He still cannot stand up without help, he has to hold on to me to walk to the bathroom. I did notice that I am not taking all the weight now, he is doing more himself. Thanks to all who are sending cards and well wishes. Thanks G for all the goodies....no more woopie pies woman!
I read some good info on mouth care. His upcoming chemo will cause mouth sores & mucositis. There was an article written by a dentist who had a child with leukemia. He said the normal prescription stuff the pharmacy gives you tastes horrible but the stuff the dentists use is much better (he would know). So I have the name of 2 swishes, it is to be used everyday 1 or 2x a day and you don't wait for the sores, you use it before you get them. This guy said his kid did not have 1 mouth sore...that would be nice. Stanimax or PerioMed the are both .63% stannous fluoride. I have to ask Jed's doc and if it's ok, then I will call the dentist and see if they will prescribe and dispense it. SOOO as you can see I am very busy here!!!! Yes I have nothing else to do but look for stuff to make this easier on Jed's little body. So far this is the ONLY info I have found that does not have another article disputing everything written! I swear it is horrible. I was reading about diet and nutrition. Some say no vitamins some say yes. Some say no milk some say yes. One article even said that grapefruits can make cancer cells grow?? Ok, so no grapefruit (Jed hates it anyway). So much stuff. After reading all day I had to just start laughing. The kid I'm trying to find the right diet for is not even eating at this moment AND if there is 1 thing I know from all the years of doing this...I am just happy when he eats..whatever it is. So I guess I will stop obsessing over that. I won't even tell you how much time I have spent trying to find chemical free wipes to wipe him down with and an all natural lotion to help his dry skin. I have lots of info on that...I will spare you..at least for now. Oh and did you know that if you put a few drops of tea tree oil in the wash it kills more microbs? grapefruit seed extract is an antibacterial too??!! you can use it in the rinse of the laundry! ok, I will stop now.
Anyway back to boy wonder. He is making progress, slow...as usual but compared to last weekend when he was not talking or even nodding his head..Wooo we are rockin'
Love J & K

Hi all. Well today was better..mostly. He was more awake and alert. He is stronger, still can't stand or walk on his own but getting better. He got some platelets and some packed red cells today. His counts are still dropping...they can't get too much lower so they have to start back up soon...well sort of soon! The new issue seems to be stomach pain. He had a little yesterday but today it is worse. They are testing him for C-diff. He is on so many antibiotics that they kill the good stuff in his intestines and then this always present bacteria take over. Still waiting for test results on that. He is also more nauseous than he had been previously. We put the phenergan back into play. He can get it now if he wants it. They had taken it away afraid that it was the reason for all the weirdness earlier. There flailing and such. Maybe it contributed to it, I really think it was a combination of his sever dehydration, lack of nutrients, tons of chemo and 4 different antibiotics. But now that he is getting enough fluids and nutrients I don't think the phenergan will be an issue. Besides if I had to choose between him not talking or him throwing up...well I would prob choose the not talking. Throwing up when you are so weak and you hurt is not fun. especially if you are throwing up nothing. But the not talking thing was pretty scary. Mommo was here today and did my laundry...no one stole it...bonus. My friend Becky was here. She was visiting family in Hunt Valley and drove all the way here to see me and bring me goodies! Thanks Beck. Danny came this eve. He had a busy day of getting the oil changed, new tires, other stuff on the car cleaned..filters and such. Then he made the mistake of looking into the drawers in the fridge....that started a cleaning project. Never look in there unless you really want to start a project. Well at least now the fridge is clean. He had a lovely story from his visit to jiffy lube that included a 4 year old pulling poop out of his pants and looking at it while hiding in a corner...gotta love it. Jed was pretty chatty today on and off. He just randomly jumps into a conversation. You have to always keep in mind that he is listening...even if he is drooling and snoring he will pop up and put his 2 sense in or even better, he will repeat a conversation you had when you thought he was sleeping..gotta watch that! The best part about that is in his drug induced fog he gets everything confused and then he argues with you when you try to correct him. I just go along with it.
I am so full again, glad most of the dinner brought up here is gone. I am making my self sick. I guess that's it.
Everyone send good thoughts and positive vibes to our friend, Thomas, in Texas, as he and his mom leave home tomorrow to move into a hospital far from family to get ready for his transplant. Nothing but success. Or as our friends the Althoff's say NEC, never ever quit.
Ok, nitey night all
Love Jed and Kristin

Happy Thanksgiving everyone. Jed is a little better, he watched the parade this morning. He is still not eating but he is headed in the right direction. He had a CT scan yesterday just to make sure that all the walking and talking issues were not related to a problem in there. It was clear. He also had another echo to make sure that the extreme fatigue was not from a heart problem. That came back fine also. My thought on this is, he was just so dehydrated and lacking any nutrients then he got all that crap dumped into him, stuffed full of antibiotics and had some lovely high fevers for quite a few days. I think it was just too much for a little worn out body. He is recovering now. Slowly but he is recovering. Tomorrow he will most likely get platelets again. He has been fever free for almost 36 hrs!
Danny is here, Savannah is headed up this evening with all our food. So that is the news from here at the Bat Cave. Hope everyone has a very nice day.
Love Jed and Kristin

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No fever since around 2am!!! he is snoring! more later

Hi. Jed is still running a low grade temp. He just got some tylenol and will be getting platelets today. To add insult to injury he has to have his port needle changed. He is too weak to go to clinic and I don't think Holly is here anyway. The hope is he won't freak out too much and Amanda up here can do it. It was to be done yesterday but there was just no way he could have handled it. I also need to wipe him down really good and change his sheets. That is our exciting plan for the day. They are stopping one of the antibiotics because none of his cultures have grown and he is on 4.
I will keep you posted on all the events happening in the Bat Cave....same bat channel..same bat time...well not really
anyway
Love J & K

I am trying to write thank you notes to cover all the ones I have not written all summer and for Jed's birthday and his party. I lost my list so I know I will forget many. So please accept this as a blanket thank you for all those that love and support us and send Jed stuff!!!! Everything everyone does is appreciated...even if you don't get a note.
Now I hope I'm cleared to start my thank you note list fresh!
Love J & K

Hi all. I am a little calmer today..not much but some.Mom and Savannah were here & brought goodies. Jed had a fever this afternoon and then he went into that weird thing where he just looks at you with huge eyes but doesn't say anything. If you ask him the same question repeatedly you might get a whisper, head movement or just more staring. Dr. Blackall came in and while he and I were talking I asked Jed if he was listening, he nodded his head. I then asked him if he understood what i was talking about and I got another nod. I questioned him and managed to figure out it's the weakness that makes it hard for him to talk. It was good to know that his brain was working in there but sad to know he was too weak to even answer a question. A little later he asked Savannah to go get him a gator aide. he sipped some of that through a straw and since then he has been propped up watching cartoons and nodding off. I think he is making progress. I hope. I am hoping these fevers stop soon and there is no weird virus in there cooking.
Oh, here is my WTF story of the day. Savannah and I went down and put my laundry in. The dryer was running but the washer was empty. We loaded it up, started it and left. Mom went down about 40 mins later to move the stuff to the dryer. She came back and said, "so I've got bad news, your laundry is gone". I laughed and said, "yeah right". Her response was " no I am serious, it's gone and we can't find it" . So to shorten this long story someone took all my laundry out of the washer..soaking wet and disappeared with it! The guy that was in there while we were looking helped but he said the washer was empty when he came in. We looked and called the coordinator and she looked but it was nowhere. About an hour later Savannah was looking again and just checked the dryer...it was full of my clothes! The other guy had come back to move his load to the dryer. Savannah traded him so she could wash mine again (who knows who touched it). So my stuff was in the washer, again, and his was in the dryer. When mom went to move my laundry to the dryer the guy came in to get his stuff out of the dryer...it was empty!!!!Someone had taken his laundry. As least his was dry! Savannah and mom helped him look but as far as I know he has not found it. Weird. For me it was a big red flag saying Do Not Do your Transplant laundry here. Mom said someone will bring it home and mom will do it and seal it up to come back the next day. That's a lot of work for her and she will be back at work but there really is no other way to make sure weird people don't touch it! So that was my weird story for the day.
i hope this eve is non-eventful. I know that the nurses up here were thinking I was " a little stressed out". At one point Jed would not answer or nod or anything he just stared at me. I went out to Deana..I'm sure I looked crazy. I told her Jed is unresponsive. She came in and after some coaxing we managed to get him to respond. That's when she decided to drop the phenergan for awhile to see if it makes a difference. Still waiting to see. But this is how weird I am, after all that what i have been thinking about is.... it correct to say unresponsive or non-responsive?
oh man, tons of fun
love J & K
Thanks all for the positive vibes and nice comments. It all helps!

Hi, quick note. After just a few hrs of TPN he actually spoke a whole sentence and smiled. He also got up, with help, and went to the bathroom. He said he feels a little more awake. He is still sleeping most of the time but I really do think that this prob was from lack of food and dehydration. I feel horrible that I didn't figure this out earlier and demand TPN...I mentioned it but just waited for the Dr to start it. Not gonna happen next time. I really should have known what was going on. I think we are are our way to fixing it. Just a shame he had to suffer like that for basically no reason. things are headed in the right direction now.
Love J & K

warning....bad language...
.Ok, so that was absolutely FUCKIN" pointless Mr night resident guy. Thanks for coming in to do the same fuckin thing the nurses do & they do it way better. ok, so maybe the neurotic mother is wrong and it's not the only antibiotic that is different since yesterday but don't tell me it doesn't cause muscle weakness and myasthenia syndrome like effects. I looked up everything I could find while I sat here for almost 2hrs waiting for you to grace me with your worthless presence and I get "ok, I will pass this along to the day team and the attending". (I think it's Comito...god i hope so, if its another doc that does not know Jed I will scream) "I will let them know about what is going on and if they want to change anything they will". They PAY these people? He couldn't even roll over..with help.. to change his sheets. He could not swallow his pills and threw up all over, he just sat there while he threw up, didn't even move.
Ok, so our new nurse just came in THANK GOD FOR SMART PEOPLE, and as she and I talked about it and I repeated what I told to Mr. worthless she said "when was the last time he ate anything substantial? Well that was Monday night and it was a half of a burger. We then started to talk about dehydration and I told her that he always is mildly dehydrated but I can tell by looking at his face that it is worse. Yes he is the king of no pee, but this lack of peeing is not right even for him. SO between the complete lack of calories and fat and sugar in his little deprived body and then also being dehydrated it could definitely cause all of these symptoms and the SEVERE weakness. He is now on TPN and maybe by the morning we will see an improvement. It really is a very reasonable explanation. Is it right? I don't know but at least it sounds plausible and I can breath a little while I stare at him all night. I at least have some hope that we are correcting this problem. Thank you Erin for talking it through with me instead of just staring at me while I talked.
I am never the bitchy, neurotic, demanding mother up here..but maybe I have hit my nice easy going limit.
I know since around the end of August I have been just completely worried about him. I chalked it up to end of treatment jitters and me just being extra tired. I was emailing Denise SO much and she was forwarding some of them to Dr Ungar to answer for me. I really felt nuts to be so worried when we we almost finished. hhmm,
guess I'm only a little nuts. So mr resident dude when a mom says this is just WRONG, something is wrong, try to make an effort to talk through it to maybe find a reasonable cause or at the very least... fake it, pretend to be thinking of something.
I feel better now. I will feel better in the morning when I see one of OUR doctors. This sucks and it hasn't even gotten hard yet.
Love J & K

i don't know what to write. He is so weak all he is doing is sleeping or staring at the tv. He did sit up and eat a couple bites of mashed potatoes and a bite of a chicken leg. I got excited about that because he was almost normal acting. About 20 mins ago he threw it all up. He cannot sit up on his own, and when I hold him up he sways and he had a little one of those weird flailing things. His temp went from 37.7 to 39.6 after taking tylenol. The just started TPN (liquid food) I am hoping to see an improvement soon. I am afraid of how I will get him up when he has to pee...god forbid he has to go sit on the toilet...there is just no way. A new nurse is coming on at 11. I am not sure why but I am not fond of the one we have now. she seems competent and is nice but ..guess it's just a personality thing..well and right now I don't like many people!
oh and to add to all the fun and bring everything back to me..cause it's all about me, the razors I bought to bring with me are not the ones i usually use and I think I am allergic to the strips on them. My legs are so itchy I want to scratch them til they bleed! YAY fun.
It's hasn't even gotten hard yet....oh god. There are no words to describe how bad this SUCKS
Love J & K

Hi all. Just hanging out with fever boy. he ran a fever on and off last night but it is only the Ara-C..I'm pretty sure. He was awake this morning for a little then went back to sleep. At 11:45 this morning They came in to do vitals and Jed's temp was 42.2..that's 107! We woke him up and he was coherent. Mom and Dad came in and Jed asked for a drink, I helped him sit up and he needed a straw for his cup. He reached for the cup and I saw his jaw clench and his arms just started flailing around. It only lasted for a second but it scared him. Us too but we acted cool and Hop said sometimes his muscles do that. The Tylenol did finally start to work but he is still hovering around 100. The fever just completely wore him out. He slept all afternoon and evening. he wakes up to pee and he is so weak he has to be helped up. He hasn't eaten today. Really he hasn't eaten in about 3 days. I am hoping he bounces back tomorrow or I think we might have to give him something because he cannot afford to be any weaker. They added a 3rd antibiotic and they also added an anti fungal.
I have to say thank you to the whole Hildebrand/Morgan clan. Your gift cards are crazy but i thank you very much. We love all of you. Thanks to all of the people helping in one way or another. Everything is appreciated.
That's all for now. I really want him to eat something and get some strength back..not that he had a lot to begin with! Poor guy.
Love, Jed and Kristin

Hi everyone. Round one of chemo is finished! Today he slept a lot...nothing new. He also has been having reoccurring high fevers. 103-104 or so. He is on 2 antibiotics....I might have written this last night but anyway, he had a fever at 10am today and then it went away. It came back at 8:15pm. He had some tylenol but as of 9:20 he was still around 103. They will be back in soon to recheck. None of the cultures they have taken have grown anything so I am fairly sure the fevers are from the Ara-C. Now that he has finished his last dose hopefully over the weekend they will fade away. He was much better today.....no ativan! He was taking it for nausea but it was making him weird and weepy so we skipped it today. He had his spinal tap at 11:30 this morning. Carol (the nurse in the OR) always has something neat for Jed. Twice she has given him these sea shells that are called angles wings. She soaks them in bleach water, scrubs them up and sprays them with a shiny coating. Today she gave him a bigger shell that is all shiny and a word find book. He loves her. Whenever he gets to the south OR and Carol is not there he starts asking for her until she comes! Only one time that I can remember he had a procedure without her and he drove the anesthesiologist crazy. Everything that guy did was wrong..and Jed told him "that is not how Carol does it" over and over and over. This guy actually got his ego stepped on .While Jed was out the Dr kept saying was "oh, I wonder if I can do this the way Carol does it" blah blah blah! I just laughed at him. He really was ticked off. It was funny, kind of like a little boy that was angry and stomping his feet! I have never seen that little man again! Anyway, side tracked a little there, Deana did Jed's spinal tap and he went through it with no issues at all. He was awake for a few hours just watching tv earlier in the eve.
He is very thin and very weak. You don't really notice until you see him with no shirt or you see his little chicken legs. Deana noticed today as we were headed to the OR just how thin Jed really is. He has diarrhea now of course (I hate that word, there should be a word that is not so yucky sounding for that) but I guess it is a yucky thing. Ok, so I am sure it is caused by the antibiotics. It just drains him even faster.
Yesterday he didn't eat anything at all. This evening he ate about 2 bites of dried Frosted Flakes and a half of a piece of toast. At 5:30 the nurses ordered Jed a few pieces of bread and some jelly to be brought up so I could make him toast. It is 10;30.....still not here!!! I went down around 6:45 and got it myself but of course no one down there could find any jelly??? WTF oh well. I'll start collecting them on our trays.
They are coming in around 11 to hang his blood. His platelets are low and it will make him feel better.
I guess that's about it, Danny was here today, he and Jed nap together while I shower and do laundry. OH the laundry...I have been doing laundry here forever and most of the time there are no issues but I have found that the last couple of admits it has been different. This time there was a ton of laundry piled up down there when I went in the afternoon so I just brought it back and went back at 7:30 tonight. You are to put your name room number and time on the washer when you are using it and then the dryer. At 4pm there were clothes in the washer and written on the sign up sheet it said DO NOT TOUCH CLOTHES IN WASHER and it did not have a room number or name. I just figured it was a transplant kids laundry so I left it. When I went back at 7:30 the same stuff is in there. I know that can't be a transplant kids stuff...you can't leave it sitting in the washer for hours. I got the volunteer to move it. Anyway the point of this rambling is that I really looked at the machines when I was there. I never noticed before but they are kinda gross inside. The lint filter in the dryer has something sticky coating it. I wish our wing had it's own washer and dryer. I want to do Jed's laundry myself..control thing.. but man I will have to spend a day down there cleaning the machines and the room!!! (for transplant)
They just took Jed's temp again....104. Great. poor guy.
ok, I have whined enough. Savannah said there were about 25 cards in the mailbox today!! someone will bring them up tomorrow.
Trying not to think about missing Thanksgiving...Jed's fave holiday. I haven't seen my Gram B in a long time (my fault for not going there)..and she will be at Adam's for Thanksgiving. :( oh well suck it up!
Gotta go, I wonder if they will give him blood even with this fever? Does that make any difference?
Love J & K

Hi all. So he seems to have made it through the idarubucin without a huge problem. We have been able to keep the puking at bay. Last night he did have ativan on top of his other anti-nausea meds. Ativan makes him weepy so today was interesting. One minute he is having a normal conversation and the next second he is weeping. He got very angry with me when I told him to brush his teeth he said I already did twice today....um nope not even once. He was yelling "why do you never believe me"!!!! I said ok, fine whatever but you have to brush them again before you go back to sleep. 10 mins later he says " i need to brush my teeth i haven't done it at all today".....ok...great idea.
Danny was here most of the day. Savannah and Kyle came and brought me a chicken Caesar salad . Jed asked for a milkshake but everything is tasting weird to him right now. He didn't eat anything today. He is pretty high too. Just going on and on and on about whatever topic he latches on to! He likes to ask me to do stuff and then says "why are you standing there go sit down your acting crazy"...Yeah, ok dude I'm the crazy one...don't think so..it's all you buddy! i think some of the nuttiness might have been from his 104.1 temp he had this afternoon. He had a lower one last night and they put him on 2 antibiotics...just in case. We are fairly sure though the fevers are from the Ara-c as that is a side effect. Right now he is sleeping ....hope to keep it that way! One more dose left and then this round is over. 1 step closer to all better!
that's all for now
Love Jed and Kristin

Hey, Jed is getting his Ara-C right now and at 9 he gets the idarubicin. I just want that over with. I am kind of scared to see the effects of it. He has gotten a drug from the same family but this, I think, is a little stronger. Anyway I will write about that later as I see what happens.
I was asked to make a list of places we could use gift cards for. .I am not making it to ask for stuff!!!!
SO
walmart, giant, pizza hut, mcdonalds, game stop, subway
ok, there's our list!
We are ok here so far. He is starting to feel a little worse but so far it's ok. I am just all tensed up waiting for the yuckies! Dr. Ungar was in today just to kind of give me a little info, confirmed the spinal tap for Friday. Our "meeting" to talk about all the transplant stuff will be next month sometime. Transplant could possibly be in January and he assured me that any decisions made pertaining to Jed's treatment will be made by us not any other Dr. That is good. I also met the transplant coordinator today. She came in while mom was here. She just explained some stuff. Some of it I seem to already know but she gave me some written info, I will read it tonight. Dr. Blackall was in too. We talked about the approach to take in trying to help Jed keep his head in the right place. Also about his complete opposition to the broviac. He is fixated on the tubes hanging out of his chest, really freaks him out. Actually it always has. He has always said he would never want a broviac..welp, no choice now. anyway I am going to start to ramble about nothing so I will stop now and let ya'll know how he does with his idarubcine stuff.
hugs to everyone and more thanks than I can say
Love J & K

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Jed enjoying his Pizza hut dinner compliments of Casey, Kevin and clan...thanks guys!!

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Hi. well 2 down 3 to go. He is tired and the bone ache has not gone away yet but Deana (nurse practitioner) said that his blood counts show that the cancer cells are being killed!!!! yay. They did come in earlier and say that there was a slight issue with his echo and ekg. They redid the EKG and after that Dr. Ungar decided to go ahead with the idarubicin tomorrow. I am glad because I would have been afraid to not do it. This ara-c that he is getting he has gotten before and by itself the cancer cells can outsmart it but with the combo of the 2 drugs the hope is it will get him into remission. It turns out that his echo and ekg meet the standards for this protocol so they are not endangering him or anything. He did have a mini melt down today. He just cried and cried, and moaned. He wishes he was DJ and he doesn't want a broviac and he hates his life on and on. the only argument i have for that is..... a crappy attitude with make everything so much harder. I told him i don't think he needs to be chipper and do back flips but he needs to try to be as positive as possible. He was very frustrated with me, telling me " I can't and if you were me you would know". He is right but I am just not going to let him have that attitude. I told him he can cry and be scared and upset..but the moaning about wishing he was someone else and that he hates his life will be kept to a minimum. It's a waste of valuable energy and puts a very negative vibe into the room. I don't want him to be a victim, I want him to be a winner.I just hope i don't regret being pushy. I have no clue how he feels but I am afraid that morose attitude will just do him in. Deana talked to him and calmed him down. I actually started talking to Danny on the phone and pretended not to listen and he and Deana figured out a pain management plan on their own. Deana also told him that she is in charge of deciding when the broviac goes in and she will make sure it is at the last possible moment. After she left he calmed down and then was much nicer to me! BUT he got a little snippy again when I made him get up so I could wipe him off and change the sheets! Heaven forbid we smell better. I am getting him used to doing that everyday so when we do come in for the big event it will not be a new thing. I have no idea if it will work that way but at least his sheets are clean today! Danny brought him subway so he was better after that. He played his game that Nana and Pappaw brought him today and then he went to sleep. So far, not too bad...so far!!!
Lots of Love and good thoughts are being sent our way. We appreciate it ALL. Tomorrow night Casey, Kevin and their brood in MD are having Pizza hut deliver pizza rolls and cinna sticks for dinner! Not too shabby! Jed liked that. He also ordered boston creams and cranberry ginger ale from my mom to bring tomorrow.oh and softer toilet paper!!!! So all in all we are just fine.
Thanks again to everyone for everything. I will be saying that a lot!!
Love Jed and Kristin

Hey all. So we are again in the Bat Cave. 7261 is our #. Jed had his echo...(hated it cause the guy pushed on him so hard and he is all bone), the ekg was quick and painless. The spinal tap went well, just sad to be there again. Carol and Dr. Neely took good care of him. Dr. Blackall was already in to check on Jed too. We are unpacked and Trish you would be proud, as soon as we got up here I asked for a tub of sani-cloth wipes. Erin (nurse practitioner) came in to check Jed. She said that Deana (the other nurse practitioner) sent her an email saying that if Jed came in on Monday she wanted him! So Deana will be in tomorrow and she will take Jed. That is great because if we come in by ER then we get a resident, but when we come in for a scheduled visit we get the nurse practitioners. Way better! Especially since they all know Jed and they are not scared to page the Dr. The residents always wait until the last possible minute. Some are very good, we have broken in many but some...well anyway.
Jed is sleeping right now. He had Danny go to Fuddruckers for a burger when we got up here from his spinal tap. He ate about a 3rd of it (according to him it was at least half!). Then he got pretty nauseous ..who wouldn't after that burger. We got some phenergan into him before he lost all that precious protein! Chemo will start soon. Whenever the pharmacy gets it up here I guess. He gets Ara-C every day for 5 days and Idarubison on day 3. Not sure how to spell that one...I have it written down somewhere. I think he will have a spinal again on Friday...I think. Then we just hang here until his counts return. He thinks he will be home for Thanksgiving...I am not optimistic about that. Jed's counts are notoriously slow to return. But who knows!
Danny is still here hanging out. He brought us up today and when we found out our bed was ready right before the spinal tap he moved all of our stuff in for us. The parking here sucks now. We use the old main entrance because it is right by the elevators and with a parent pass we can just swipe it to get to the 7th floor. The stupid parking guy was yelling at Danny to park way over somewhere else because he said "those parking spaces are for chemo patients" Danny told him about Jed and he said "I don't care he is not in the new cancer institute so you can't park there". Danny then told him that Jed's food would be cold by the time he moved the car and walked all the way from the other side of the building. The guy said " I don't give a F' you can't park there". So needless to say Danny unloaded on him...but he still had to move the car. I have a parking ticket from when I brought Jed back from his party and there was no where to park. I parked in valet. They gave me a ticket...it's still in the ashtray. Whoever designed the parking didn't have to haul a kid and luggage up to the 7th floor. Or even just stuff for a kid!
Anyway we are here and waiting to start. Let's just get this over with. Thanks to everyone for the love and support...
J & K

Jed and DJ checking out the dessert menu.
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Hey all. So tomorrow we start all the crap. Jed had a good day today. His Dad and family came here for a couple of hours to hang out with Jed. Danny and I took a ride. When we got back all of a sudden he wanted to go out and eat! 2 kids from PSU Steph and JJ stopped by with a bunch of stuff for Jed. Yoohoos and tons of candy and a DS game. When they left we went and picked up DJ,,,of course and headed to Chilis. Needless to say we are all so stuffed we are sick. To our dismay, our fave manager moved to a different store...:( we are very sad about that and the Chilis he is working in now is in Lancaster. Our dinner was still great Jed just didn't get fawned over like he normally does! After we dropped off D Savannah called me crying, she was getting pulled over....for something that was my fault. Her registration was expired..since August. I asked to speak to the officer and I explained that it was my fault and what had been going on here all through the last few months and what we are gearing up for now. He said "um, I understand, but with registration tickets I like to be consistent and the fine is $150". I said "Oh my god, but really I have not been home too much and it just got lost in all the other things going on." he said "I like to be consistent with registration citations". I told him well thank you very much for you compassion and understanding officer. and he said "your welcome mam" !!! MORON. I am going to write him a note and tell him everything that is happening, with all the gory details, and then I am going to say I hope in the future others show him the compassion and caring he showed to us. Jerk
But any way screw him. Jed and DJ had fun at dinner, so did we. Grace and Jim stopped by after we got home to drop off some stuff for Jed, socks and a big jar of coins for the vending machines! I am doing laundry and packing, Jed and Danny are watching The Land of the Lost. Jed is ok until he has a second to think about what happens tomorrow, what is starting. He just starts to cry and says he hates his life, he wishes he was DJ and he cannot do this again. I keep telling him yes he can, it will be very hard but he will conquer all this and by springtime he will have beautiful healthy cancer free bone marrow. I have to say though,, I don't want to F'n do this either. The pain and sadness and just how horrible it is for him gives me nightmares. BUT we will do it and we will win. I am tired of F'n losing and I am tired of my son not having a childhood. Better not start that I can go on for days!
I also want to send strength and love to another boy getting ready for BMT. Thomas we know you will be victorious too!
And Casey, Kevin and crew...you guys will get through this and Kevin's cancer will be a thing of the past very soon.
gotta go washing machine is beeping.
Love Jed and Kristin...