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.
.................................................
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...

Hi. We had an awesome dinner tonight at Uncle Adam's and Tiersa's. Livi-Mac was a nut the whole time!! funny kid. Jed actually got up and took a shower! He also ate food when we got there! and he ate leftovers when we got home! Everyone was there it see Jed, it was wonderful. and I am sooo full! I haven't really eaten much in the last few days....but I def made up for it today!
I went this morning and bought some tshirts and stuff for me and sleep pants for Jed. I was headed to the mall because old navy didn't have many sleep pants for some reason. I met my parents at the mall and they bought Jed quite a few pairs and some shirts too. I just got an interesting tip from a mom who is headed into battle Nov. 30th. She said she was told to buy many, many pairs of underwear because the diarrhea gets pretty bad and you can just throw them out instead of washing them..to avoid more germs. SOO tomorrow I am headed back out to stock up!
SO that's all for now. I would put up some pics from tonight but I don't have my own computer right now so I can't download them yet. If Savannah puts some on facebook i will steal them for here!
OK, good night all....thanks to everyone at dinner it was wonderful!
Love J & K

Hey, Just wanted you all to know I think I have a general for Jed's Special Forces! I got a call today from the lovely Trish Smith, no relation to Jed, and she has started to prep me for transplant life. She is Jackson's mom and she has been through this hell. She is getting together all the info I need to know and then I can brief the forces on transplant protocol. Which basically boils down to NO GERMS! When she gives me the plan I will share!
Trish I can't thank you enough for all you have done and all you are going to do. Who knew I had to wash all our own sheets to make sure they are not touched by anyone else. and the bin with a lid for peoples coats is brilliant. I am thinking when we get closer to the time maybe I can get you to brief everyone for me! Like a meeting of all the troops! There is so much more to staying germ free than anyone can imagine.
Jed is sleeping. Pappaw brought over this year's Hess truck, except I think they are race cars. Jed was awake for a little while and then went right back to bed. No food for him today though. He just wasn't hungry.
I saw Gram tonight. How someone who had a kidney out a few weeks ago look so good is beyond me! She is coming to dinner at Adam's tomorrow.
The biggest order that our new General has issued is that from here on out the only outcome is success. No thoughts or discussion of any other outcomes. Positive thoughts only. GOT THAT?! It will be a long hard battle but Jed will win this fight and we will all be there to get him through.This is extremely important so take it to heart. I also want to say thank you to our sweet friend Jackson, because of him we have Trish and his whole family helping.
ok, gotta go
Love Jed and Kristin

Hi all. So not much new here really. Just hanging out. Jed is spending most of his time sleeping and enjoying his bed. Sat afternoon Adam is having dinner for Jed. Jed said "even if I can only lie on the couch I am going". He even helped plan the menu..that he probably will not eat....you never know though. Sunday he is to go to his Dad's to see everyone but I think they will end up coming here and hanging with him..we will leave and they can visit in his room. Our biggest battle will be keeping Jed's spirits up and making him believe he can do this as we move through this treatment. He has already asked me to please not make him do this. I told him he could not quit until he tries. I asked his nurse, Denise, if he really had a chance of getting to transplant and making it. If she had said it was very slim we would have had some soul searching to do BUT she said he really has a realistic chance of doing this and being well. So that is where our heads need to be. I am constantly thinking of a girl I know...she is around 36 now. She had a transplant at 15. she has 2 kids and living a great life. We also have a nurse upstairs who has had 2 transplants...her husband also has had 2! Jed met him at camp last year. I might ask Jen if her husband, Big John, will come and talk to Jed. I think he needs to talk to people that have done this..especially a guy. Big John, I don't know if you read this, if you do maybe you could come and talk to Jed when we come in?
I want everyone to know that the way we are planning to get through this is to try and concentrate on making everyday as good as it can be, truely one day at a time. Not dwelling on ANY of the what ifs. That's all for now...oh and I have a motorcycle for sale if anyone is interested!!! No I am not upset about that..I just don't want to have to worry about the payment, registration, inspection and insurance. I can get another when the time is right..maybe when I can teach Jed to ride too!
Love Kristin and Jed
thanks again for all the love and support.....keep sending the good vibes, we will take it all!!!!

I can't say thanks enough for all the love and support! Keep it coming!!!!
Thank you all so much!
Kristin and Jed
Jed has some SUPER ROCK'N motorcycle women behind him!!

Hi all. I know there are some of you that have not heard yet and I hate to tell you this way but I just cannot make all those phone calls. Anyway it looks as if our "cancer free life" was short lived. They found leukemia cells in Jed's marrow today. Not good. really not good. He is hanging on. Right now he is dealing ok, I know this will change as he starts to feel bad from chemo.
The Plan: Monday we go to clinic and he gets a spinal tap, an ekg and then admitted for chemo. I am not sure but I think it is 5 days of chemo. Then he will have no counts so we stay until they come up. This round is repeated and then we go to transplant. The search for an unrelated match started today. There are no words to describe how hard this is going to be for Jed. He has not had time to recover from the last few years and this new round will be hell. Just getting him to transplant will be extremely hard. I promise to keep you posted and as I get more info about this stage I will pass it on.
Ok people, this is the real deal here, we are in deep now. So pull out all the stops, hoodoo, voodoo, prayers, jingles, good vibes we need it ALL, every little bit.
Love J & K

Hey. Jed has a bone marrow aspiration in the morning. Dr wants to make sure it's clean before we reschedule taking out his port. His counts are just kind of hanging. Not really moving. I will keep you all posted.
Love J & K

Hey. Well what's new? Jed seems to be feeling a little better. Saturday he and I went to a chicken bar b que. It was in memory of our sweet friend Jackson and all money raised when to the music program at Hershey Med Children's hospital. They raised $600! Danny rode in the toy run from York to The med center. They take $ and toys to the kids for an early Christmas. Today Jed went with the Althoff gang for the afternoon. They went bowling and to the park and got some ice cream. He went without me!!! Like a regular kid. YAY. Thanks to the Althoff's for taking good care of him. He is tired though!!!!
We found out today that the Althoff's are moving to South Carolina :( we are happy for them, it's warmer there, but we are sad for us!
I don't know if Jed is going to school tomorrow or not but hopefully the teacher will come tomorrow eve. His hair is still falling out but not as rapidly. Maybe it will stop. I guess that's all the exciting news from here.
Danny and I spent part of the day riding...the weather is awesome...wish it would stay that way.
Love J & K

Exciting afternoon here. Jed came down with a fever around 2pm today. We had to go to clinic and see what they wanted to do. He ended up getting an IV dose of antibiotics but we got to come home. I have to call tomorrow morning to see if they want him to come back for more. He seems to be feeling ok. All good for now.
Love J & K

Hey. So the port removal is off for tomorrow. His white count is too low to have surgery. We will have his counts checked in 2 weeks and go from there. I haven't told him yet, I have no idea how he will react. Reasonably I hope! He is still losing hair, not quite as fast but it is still coming out. Saturday at the Cleona Giant near Hershey there is a chicken Bar B Que in memory of our great friend Jackson. Stop by, all money goes to the music program at Hershey Med Childrens hospital.
Love J & K

Jed is shedding hair like he got a huge dose of chemo. The Dr said it is unusual but not cancer related. Must be late term chemo effects. He is sad, resigned but sad. He and Danny are watching GI Joe.
I told him he can stay home the rest of the week until his hair is all gone.
Love J & K

Oh lovely, now Jed's hair seems to be falling out. His pillow is covered. Just what he need. Waiting to hear from the Dr. but I know he will say that this happens sometimes.
Poor Jed
Love J & K

Hey. Home from clinic. Counts are ok. His white count is down again but everything else is headed up. The Dr. said his marrow is just very tired. He also told us that it could be months before Jed has any kind of improvement in energy. He also gave both of us a talk about being 12. Basically saying that Jed needs to be treated like he is 12 and healthy..but only if he is acting 12 and healthy. We have to change our thinking process to "Jed is a healthy child" from "Jed is sick". That is easier said than done....I did that before. It will be harder to do it this time. Dr Ungar also said that Jed should not stay home from school because of other kid's illnesses. That if Jed is up for school he goes, no questions. Of course Jed right away says..oh good I can go across the street and down the ally to "so and so's house". UMMM..no. I explained to the Doc that we live in town and my kids have never been and will NOT be the kids running around town. Dr Ungar told Jed that as he starts to act 12 what he should expect are the same privileges that Savannah enjoyed at 12. YAY, Savannah was not allowed to wander around and couldn't even go across the street to Rutters. Anyway, as we all start to make these adjustments and changes in thinking I have a feeling that the ONE person who will have the biggest problem with it all is ME. I worry about his lack of social interaction with kids his own age. The Dr suggested he be allowed to go to a friends house and hang out...um the only friends I know well enough for that are DJ and Hayley. Thank goodness he suggested the rules that apply to Savannah apply to Jed! Savannah only could go to people's houses that I knew well.
So this new chapter should be interesting. Oh yay, more worries.
Ok, that's all that is new here I think. Port comes out on Friday!!!
Love,
Jed and Kristin

Hi. Jed is still in bed. He had a busy weekend but he didn't feel so great all through it. We all had a good time Saturday night. Sunday morning he was up early and headed to State College for the THON 5k. His Pappaw ran it in 22 mins. It's the 1st race he has run in a year after having surgery. Not to bad! I'm 20 yrs younger and couldn't do it!
Anyway, Jed slept all the way there and all the way home. He staggered in here yesterday afternoon a little before 3pm and went right to bed. He said that he had fun but he probably should not have gone because it was exhausting. He woke up around 7pm & wanted blueberry pancakes. I made them, he ate one and then we changed his sheets because they were soaked with sweat. He was just feeling yucky. Nothing specific just yucky. He finally fell asleep again around 11pm. When I woke him up this morning at 7:30 for school he woke up crying. He is back to sleep now.
Tomorrow he has clinic for blood counts and I will ask the Dr. if all this is normal. He just seems to be struggling, I know he is not going to bounce right back after all these years of toxic crap being dumped into him but he seems to be making no forward progress at all. Maybe I am just rushing him.
That's what's up here. same old stuff!
Love J & K