Sunday, November 25, 2007
Please read the latest entry in my journal (Sometimes I Think) to find out what is going on with John. I am just home for a few hours and will be back at the local hospital with John early Sunday morning. I am asking you to please keep up prayers for him. Thank you so much. Here is the link to the entry so you know what is going on:
Thank you so much. Krissy
Saturday, November 24, 2007
Hello friends of John & Krissy. This is Penny (Firestormkids04). I posted an entry tonight in my personal journal asking for prayer and wanted to leave the link for you: Prayers Needed <click:: There is also some information about what is happening. Blessings to you all, Penny
I'm a little scared. John has a fever of 102.6. And he has almost no immune system. His ANC is 0.4. That is just about 0. Which means, well, he needs antibiotics before he, uhm, like, dies. So I am only on here to ask you to pray. We are heading to the hospital right now. We're going local, and if the treatment there isn't enough for him, then he'll be transferred to Hershey Medical Center. If it is enough locally, then he will be treated and released to home. We will see what happens.
So please pray. I will come back as soon as I can to update.
Love you all,
It's Tammy. Everyone can now write in this journal. You don't have to send it to me anymore! So please drop in and give her your thoughts and prayers. You may put in graphics or whatever you want. So, let's give them what we did before when John was sick. Ourselves. Thanks friends!
Thursday, November 15, 2007
Hi, it's Krissy here! I'm trying the new feature on AOL journals. It's called Shared Journals. This journal has now become a Shared Journal (because Tammy made it that way!). If Tammy has invited you, you can now write entries in this Gazette! You don't have to email your entries to her anymore and have her post them. Just simply click on the add entry button yourself, just like you would do in your own journal, and write and post an entry! Remember, you can post what you want in the Gazette - words of encouragement, poems, graphics, songs, entries, anything. John and I have ALWAYS appreciated anything you have said to us. And now we can more easily communicate with YOU.
I wanted to say that I love you all SO much. Through the whole ordeal that we went through, you all have been here for us. I want to share something with you quickly. I am in a group and was asked the question today of What was the nicest thing someone has ever done for you online? I wrote in the email that the nicest thing anyone had ever done for me was not, an anyone, but a whole group of people. Jlanders. I said that they had done three things: Number one: sent things to John and me before we went to Hershey, and continued while we were there. Number two: set up and continued The Gazette, and Number three: hosted blood drives and gave blood in droves in the name of John. The group that I told this to was dumbfounded at you all's kindness. As I think about all you have done, and continue to do, I am in tears.
Finally, I want to tell you how John is doing. He is doing a lot better. He has been neutropenic for a month though (almost no immune system). For some reason he has not caught anything (I think it is the Lord). He is just not getting real sick. He does wear his mask everywhere. And he gets tired. But he is doing okay. The other thing is his kidney dysfunction problems. He has 25 - 30 % kidney function. If it drops to 20% he will probably have to have dialysis and/or a kidney transplant. Dialysis in the past made him very sick.
Other than that he is doing great. He is still in remission from the two cancers. It's unbelievable. We rejoice daily. We have as much fun as we can every day! We are looking forward to the holidays and having lots of fun. We are going to have friends over on Thanksgiving, which should be a blast!
Okay, gotta run.
We love you all,
Wednesday, September 19, 2007
Monday, September 17, 2007
Sunday, September 16, 2007
Saturday, July 21, 2007
Hi you all. John and I got back from Hershey today.
I'm feeling grateful tonight. Grateful that it looks like John's cancer is not back. That was the decision made by his oncologist at yesterday's appointment.
Actually, Dr. C. thinks John is doing quite well. All tests have come back negative. Dr. C. decided not to do the biopsy b/c there was no sign of cancer.
John's labs (counts and levels) were also exceptionally good. Except for the red cells. The Hemoglobin and Hematocrit were much too low.
They were almost low enough to get a blood transfusion (red blood cell packs).
We are hoping he will not start to need to get blood transfusions again. He hasn't had to have them since February. This meant that the Hemolytic Anemia was probably gone. Now we are wondering if the Hemolytic Anemia could be back again.
What does this mean? Well, we will take it one day at a time. Perhaps a spleenectomy? Who knows. We are not even going to think about that right now. We have packing and moving to get through, LOL.
Right now John is getting Arinesp shots (very similar to Procrit shots, you may have heard about them on TV) to help raise his red blood counts in hopes that this will stimulate their growth. If that occurs, then maybe he won't have to be transfused.
Actually, John is looking pretty good, and getting stronger every day. I was pretty worried about him about a month ago, but now the fevers have stopped and he says he is feeling really good. Praise God for that.
Sorry I alarmed you all. My bad.
Ok, I have to get back to my packing. I know I told you all I would tell you how my sleeping is going. But I don't want to make this entry too long. I just wanted to tell you John was ok.
Suffice it to say that the sleep thing has been hard. First hard, then easy, then hard again. Last night I guess went ok, but I kept having nightmares. I could hear the pressure of the air (from the hose of the sleep apnea machine) in my dreams, and dreamt all kinds of weird things. One of the things I dreamt was that a grenade exploded in my face. Another thing I dreamt was that I was a baby in my mother's womb. This is all b/c of the sounds of the air and the pressure from the machine. I DO NOT like the weird dreams, LOL. The night before I dreamt I died. I DO NOT want to have these dreams, LOL. I just want to be normal. On the other hand, I don't want to die from stopping breathing w/o the machine. Oh well!
Ok, I must run. John is waiting for me. Love you all,
Thursday, July 19, 2007
Sometimes, life seems to go along smoothly. Other times it is just one huge roller coaster ride. Ups and downs that makes us a nervous wreck. We ask, how much more of this can I stand?
Well, we can stand it all. How? By finding a fixed point and staring at it with all our might. That helps to keep us on an even keel. There is a wonderful point that helps me and I know it helps you. Just fix your eyes on it and hold on tight. You two will pull through.
Ugghh, it is too early to be up! I am often up this early, but, for some reason this morning, I am just so tired and I can't seem to get going.
The reason I am up so early is b/c John has an appointment with Dr. Claxton in a litle while. Yes, we are at Hershey again, LOL. We got here yesterday. Hopefully we will leave tomorrow. If all goes well. I think all will go well b/c John is looking and feeling a lot better than he did two weeks ago.
His fevers are gone (for now), but they will still want to figure out where the "fevers of unknown origin" came from. John has been getting tests done and so far the tests have not shown the cause of the fevers.
Dr. Claxton will probably do a bone marrow biopsy today, hopefully the LAST test in the serieies, John says (he is sitting next to me helping me write this).
Okay, about John getting the biopsy. Dr. Claxton has already said that it is very unlikely that the cancer has come back. He is just doing the bone marrow biopsy because he has to be sure.
Wait a minute. This is weird. I am sitting here calmly typing this, like it's no big deal. Why? I don't know. What else am I going to do? If anything is wrong, I can't change it. Besides, we don't know there is anything majorly wrong. Still on some level I am upset, or scared, or tired, or all of the above. I'm fine, but I'm also all of the above. Sometimes I wish I didn't have so much stress.
I'm only telling you all this because I don't want you to be the last to know. If it turns out he does have something serious, I
want you all to know, b/c you have been there from the beginning. John and I debated at first whether we should say anything, until we knew what his diagnosis was. But then we thought it would be better to just be open about what is going on. Because you all deserve honesty. Okay, I'll spit it out. With these fevers of unknown origin, one third of the time it is b/c the cancer has returned.
So Dr. Claxton has decided to do a biopsy. At first Dr. Claxton wasn't going to do it, b/c the last bone marrow biopsy had such stupendously good results (remember that? it went to the Mayo clinic and it showed that John's chromosomes had even switched back to normal, and that he was 100% donor).
But the biopsy before that one showed immature cells. Which isn't good. Rember that? Remember at that time the oncologist said it must have been some medicine John was getting (Neupogen) that skewed John's test results, making it look like he had cancer when he didn't.
Well, Dr. Claxton has decided to go ahead with the bone marrow biopsy. Just in case their was an incorrect reading of the last biopsy which was very hopeful and showed remission. In which case, horror against horror, his cancer is actually still here.
Bust most likely the fevers are being caused by something else. I think.
The fevers could be caused by any number of things, but what's most likely is a viral infection according to Dr. Claxton. He said that with a lot of viral infections, all you can do is let them run their course. John is sitting here feeding me the information about the viral infection. Funny, I don't remember Dr. Claxton saying that. See what happens? You hear the big C word and you get so scared.
So in a little while we will be off to the hospital (we are staying at Hope Lodge). John will get some lab tests done. He is also going to have to get a "type and hold" b/c his red blood cell count is too low. A "type and hold" is like a "type and cross match", which means John's blood is drawn, and the lab tests his blood to see what blood on hand would match John's blood. If John's blood counts happen to be real low, this will mean he will need to get blood (some red blood cell packs) this trip. Hopefully, it won't happen, and I doubt it will. But it appears there has been a little downward trend in his counts. He may start needing blood (red blood cell packs) again. I hope not. I hope the Hemolytic Anemia is not back.
What if I told you he looks really healthy, LOL? HE DOES! That is all I can say. Just wanted to tell you everything. Not throw it on you all the sudden w/o any explanation, later on. If we would have to do something like that. Let's all pray NOT.
We'll keep you informed of everything that's going on. The biopsy test results probably won't be back for three or four weeks.
Switching subjects, the packing is exhausting us! I never thought moving took so much. Gee, I've done it before, but I don't remember it being this tiring!
I am also throwing out a lot of things. Very emotional! It feels like I am throwing out my life, LOL!
Changing the subject again, without a segue, LOL, I have wanted to tell you all about how the sleep apnea machine and my sleeping has been going. And my daytime alertness (or lack thereof). I just haven't had the time to post an entry about this. I have had so much to do. But I will post an entry. If not in Hershey, then when I get back. Probably when we get back home, b/c we are hoping to leave for home tomorrow.
Ok, must run, we are off to the hospital very soon. Hope everyone is doing well.
Love you all, Krissy :)
Friday, June 29, 2007
Thursday, June 28, 2007
Hi John. I heard you were feeling a little weary. It must be hard with the bone marrow transplant complications continuing to come.
You have been through more in a few months than some go through their entire lives. The road has been rough and there has been road blocks of epic proportions. But God has smiled on you my friend. He has given you ways around those blocks and He will continue to do so. You don't always have to show bravery John. Just show faith. When you feel a little down. Just look up!
This is for you John. Just click the TV and relax. Remember, you are not alone!
From Krissy and J-Land
Wednesday, June 27, 2007
1. Atlanta is comprised entirely of one way streets. The only way to get out of downtown Atlanta is to turn around and start over when you reach Greenville, South Carolina.
2. All directions start with, "Go down Peachtree..."
3. Peachtree Street has no beginning and no end.
4. Atlanta is home of Coca Cola. That's all we drink here, so don't ask for any other soft drink.
5. Atlantans only know their way home and their way to work.
6. Gate One at the Airport is 32 miles away from the Main Concourse.
7. It's impossible to go around a block and wind up on the street you started on. The Chamber of Commerce calls this a "scenic drive".
8. The 8 a.m. rush hour is from 6:30 to 9:30 a.m. The 5:00 p.m. rush hour is from 3:30 to 6:30 p.m. Friday's rush hour starts Thursday morning.
9. Reversible Lanes are not understood by anybody.
10. "Sir" and "Ma'am" are used by the person speaking to you if there's a remote possibility that you're at least 30 minutes older than they are.
11. "Sugar" is a more common form of address than "Miss". So is "Honey".
12. Ponce de Leon Avenue can only be pronounced by a native, so do not attempt the Spanish pronunciation. People will simply tilt their heads to the right and stare at you.
13. The falling of one rain drop causes all traffic to immediately cease; so will daylight savings time and a girl applying eye shadow across the street, or a flat tire three lanes over.
14. If you're standing on a corner and a MARTA Bus stops, you're expected to get on and go somewhere.
15. Atlanta is pronounced "Lan-uh".
16. Construction on Peachtree Street is a way of life, and a permanent form of entertainment.
17. Construction crews aren't doing their job properly unless they close down all lanes except one during rush hour. (Ed. note: This appears to be a common theme in almost any major American city).
18. Atlanta's traffic is the friendliest around. The commuters spend hours mingling with each other twice a day. In fact, Atlanta's traffic is rated number 1 in the country. You will often see people parked beside the road and engaged in lively discussions.
19. Atlantans are very proud of their race track, known as Road Atlanta. It winds throughout the city on the Interstates, hence its name.
20. Georgia 400 is the southern equivalent of the AutoBahn. You will rarely see a semi-truck on GA400, because the truck drivers are intimidated by the oversized-SUV-wielding housewives racing home after a grueling day at the salon or the tennis match to meet their children at the school bus.
Tuesday, June 26, 2007
Gee, I feel bad. Leaving everybody in the dark. No, I haven't fallen off the face of the earth.
John and I have been in Hershey. Since Monday of last week. Sorry I haven't written an entry before now. But John was going to about three tests or appointments a day.
We have been staying in Hope Lodge. Instead of admitting John into the hospital, the doctors have just been giving him tests all day. He had very high fevers for about two weeks. They are calling his diagnosis "fevers of unknown origin". Now along with his oncologist Dr. Claxton, he has another specialist named Dr. Zurlo, who is an Infectious Disease Specialist. He is searching for the cause of John's fevers but cannot ascertain the cause. Actually, John's fevers stopped a couple of days ago, but Dr. Zurlo and Dr. Claxton are still examining him, as these fevers have come on and off for a couple of months now.
John goes to see Dr. Claxton tomorrow (Tuesday). There is a possibility we may get to go home. They will still work on his case, but maybe from a long distance. Maybe they can do more tests from where we live, and see him back in a few weeks. I hope so, b/c I am ready to go home.
Speaking of home, we are packing up the apartment, b/c we have found a new one! It is the one I mentioned to you all that we wanted. I am so excited! It is nice and new and clean, which will be good for John's immune system. And it is pretty! I can't wait to go. It has more room, so we won't be so crammed. I am looking forward to a change.
Well, there is so much more that I want to tell you, but I have to get up early tomorrow. In the morning I have to go to the hospital and straighten out an insurance issue, pick up a med for John, then John has to get a test done, and then it is off to Dr. Claxton's for an office visit. And then if we get to go home, it is back to Hope Lodge to pack, and ready the room for the next guest. I guess that is not a lot, it is all in a day's work.
I want to tell you a lot more that is going on, which I will, when I get a chance. Yes, I guess I am being mysterious, LOL.
Oh, somebody asked me how my sleep apnea machine is working. I don't get that until I get back from Hershey. There was a mixup and they didn't even start me on it! As far as my Narcolepsy med, it was working great for awhile. Now I still fall asleep some. I think the med needs to be adjusted a lot, but I don't get to see the neurologist till August. It is infuriating, but they are saying there is no way to get in and see the narcolepsy doctor early. Meanwhile I just fall asleep a lot. Oh well.
Okay, I must go to bed now.
Lots of love, and I will try not to wait in posting so long next time.
Saturday, June 23, 2007
Saturday, June 9, 2007
Hi. John and I just got back from Hershey yesterday. Actually, we got back a few days before that, but had to go back again. I guess I should explain. John finally got out of the hospital. I was scared for awhile. His temperature got up to 103.8. But being the fighter that he is, he pulled through, as always! And we came home. Then after being home for a few days, we had to go back again so he could be checked out again. Dr. Claxton said he was very pleased with John, and that he does not have to come back for 8 weeks! If John makes it, this will be the longest that he will go without having to come back!
They gave John a slew of tests to find out why his ANC and WBC have been low for the past two months. But they found nothing. But all the tests have not come back. If they find anything in the tests, they will call us up. But Dr. Claxton is pleased right now, b/c John's ANC has come up, even though he was artificially stimulated with a shot called Nuelasta. Because even though he got the shot, his counts are now rising on their own!!!
At any rate, the reason, the reason I did not tell you about what was going on before now, and that John is ok, was b/c when I got back into town, I could not get my computer to work for several days. It STILL does not work. I can't sign on. I believe it is AOL. I am typing this entry from my father's computer. I wanted to do it today, so that you all would no longer worry, and know that John is ok. Sorry that I have put you to worry. I tried for about 3 days to get the computer to work, before I went back to Hershey, to no avail. So sorry.
Well, that is about it, except we are moving, to an apartment in the same town. I will tell you all about that later. The reason is John needs somewhere that is newer and cleaner for health reasons. He needs a two bedroom apartment so that he can go into a separate bedroom when his counts are low so that he doesn't catch anything from me. We talked to our landlord and he has already let us out of our lease early. We are looking at a place that is new and clean, almost brand new, that we like very much. If you don't mind praying, please pray that we get it. It means the world to us. :)
Okay, must run. I am going to get off my Dad's computer and go eat breakfast.
Love you all lots, Krissy :)
Thursday, May 31, 2007
These were actual hospital patient reports...enjoy!
1. The patient refused autopsy.
2. The patient has no previous history of suicides.
3. Patient has left white blood cells at another hospital.
4. She has no rigors or shaking chills, but her husband states she
was very hot in bed last night.
5. Patient has chest pain if she lies on her left side for over a
6. On the second day the knee was better, and on the third day it
7. The patient is tearful and crying constantly. She also appears to
8. The patient has been depressed since she began seeing me in 1993.
9. Discharge status: Alive but without permission.
10. Healthy appearing decrepit 69-year old male, mentally alert but
11. Patient had waffles for breakfast and anorexia for lunch.
12. She is numb from her toes down.
Tuesday, May 29, 2007
Here is a short poem, something that focuses on helps me. I pray
it helps you as well.
Build on resolve, and not upon regret,
The structure of thy future.....
Waste no tears upon the blotted record of lost years
But turn the leaf, and smile.....Oh, smile, to see
The fair white pages that remain for thee.
Monday, May 28, 2007
I haven't written since Friday because it has been hectic, to say the least. As a matter of fact, the past few days have seemed like a big whirlwind, one day quickly blending into the next. The minutes I have had off have been few and far between.
The reason is because John is quite ill. They can't find what is wrong with him. He has high fevers. Sometimes the fevers do go down a little, but now he has the fevers almost all the time. Sometimes I get scared, but what are you going to do? You must keep hope, or you will fall apart. So I really am ok.
I finally got a room at Hope Lodge. I looked around for local hotels but they had no vacancies. Then Hope Lodge called me out the blue and said, "Hurry up and get over here, we have a room for you!" I ran over there quickly. I hate to leave John at night, but I need the facilities such as showers, washing machine, etc. So I decided to go there nights.
Early this morning (about three hours ago), I awoke with a bad feeling. It was 2 am. I felt there was something wrong with John. So I called up Security for a ride. Security will drive you to the hospital if there is something wrong with a family member who is in the hospital. So Security drove me to be with John.
When I got to the hospital, I found John feverish (w/ a high temp.). He had ice bags on of ice on him. He had a headache and was achey allover. This happens every time John gets sick in the middle of the night. I sense it, and I leave from where I am staying, and and sure enough, I found out he is sick. Weird how that works.
Well, John's fever appears to be very low now. His nurse gave him ice packs and Tylenol, and some IV antibiotics. That is why I decided to come over to the computer room and write this entry while I had the chance.
Well, this entry has to be short, as I have to get back to John and make sure he is still ok. If you find mistakes in this entry then please forgive me. I am a little too tired to correct it. The next entry I do will be one in which I share more of my feelings and stuff. But right now I just have to get back. I just wanted to let you all know what has been going on.
Okay, that's it for now. I will try to get back as soon as I can. Take care you all.
Blessings, Krissy :)
Sunday, May 27, 2007
Saturday, May 26, 2007
Just taking a moment to let you know you are on my mind and in my prayers. The two of you have gone through so much together- are so blessed to have such a friendship. I know how wonderful that is because the friendship part is what helped me and my Johnny make it this far. You are both such an inspiration to me- and to all whose paths you cross. It isn't easy to keep going when you simply want to sit down and rest a bit- to have a break from it all.
Hi you all. Sorry I haven't written in awhile. I have been cleaning my apartment like a mad woman to make it sterile for John. He was staying at my parent's house while I did it b/c I didn't want him to get sick while I kicked up the dust and used cleaners like lysol. I did this because his ANC fell so low that he had almost no immune system.
Well, Thursday, John's immune system dropped to 0. So that means he did not have an ability to fight anything off. I knew it would happen. I knew he would catch something, which he did, by Thursday night. By the evening he had a fever, and so we came in last night to Hershey Medical Center. When we got settled into the hospital last night (Thursday night) it was about 2:30 am.
Today (Friday) John's temperature was 101.6. He was given a slew of tests to try to determine what is wrong with him. It could take weeks though to find out why his ANC is so low. It could be bacterial, fungal, or viral. I am a little scared but not too scared, b/c he has made it this far.
So we just don't need to be concerned about him catching something b/c of his ANC and white blood count being low, but also we need to be concerned about why his ANC is low in the first place. Like what is that indicating? What kind of illness/or infection is it indicating?
John has been given shots (Neupogen and Neulasta to artifically raise his ANC and white blood count), so it may raise pretty quickly. But like I said, it won't clear the underlying problem. The only reason I am mentioning it to you is if he suddenly gets out of the hospital. But they will be having to take care of the long term problem, whether it is at the hospital, or at home.
So how am I doing? Well, there are no rooms open at Hope Lodge, for at least a week and a half! So I am sleeping in the hospital chair next to John's hospital bed. Clothes in a bag on the floor. But there is a washer and dryer that everybody shares in a section of the hospital that I do believe they will let me use, and I think they will let me use the shower too. And they will let me use the computer, so I am good to go, LOL. I have to figure out how to get to the pharmacy (a couple of miles away, and i don't know if there is taxi or bus here, we will see), but I should be able to figure that out. And hospital food it is for me! Okay, I won't stress, one thing at a time here.
My sister Val learned how to give Michael his diabeties (insulin) shots and showed my mother and father. My mother has been giving him his shots! I am so proud of you Mom! Thanks so much Mom and Dad for giving my cats his shots and taking care of him while we are away!
Okay, must go now. I must get back to John. Love you all,
Friday, April 27, 2007
Tuesday, April 24, 2007
Monday, April 16, 2007
John was discharged yesterday. Thanks for all the prayers. It turns out his problems was his PICC line (port) was infected. They had to take it out. I wonder if he will need another one. One of the things he needed it for was to get his red blood cells, but I think he can get those through getting stuck. He also needed it for Rituxin (chemo) when he needs the Hemolytic Anemia to behave. Technically the chemo can be given another way, but it is not good to do so at all. Then there is the issue of vanco (IV antibiotiotics) he gets sometimes, and the frequent blood draws for lab tests. He just may end up getting another port. That PICC Lince actually lasted six months before it got infected, which is almost unheard of!
Speaking of lasting six months, John got his first shower in six months a couple of days ago! When they pulled the PICC Line he was able to shower! Before that he could only wash up, because he was never allowed to get the PICC line wet at all, or he would develop an infection. He said the shower felt so good!
Anyway, they finally discharged John yesterday because his fevers stopped. Of course when he got out last night his temperature was 99.8, but that is not that high. But still something to keep an eye on. In the hospital to keep his fever down he was given IV antibiotics. At home he will get oral antibiotics.
So now that John is out, we may get home today. But I doubt it. It is snowing back home, and there are 40 mile an hour winds. I can hear the howling winds outside right now. Our ride probably won't be able to get here through the high winds and snow. I am not driving because of my narcolepsy. If the snow is not too deep we will go home tomorrow.
I guess that is all I have to say, except that I am feeling pretty good. Like wow, John's cancer is gone! I didn't really have time to let it hit me, because he had a complication so quickly, but I am really thankful right now. A nurse came in the rooma few days ago asking us after reading John's chart. We said yes and she practically fell over. She was so excited. Then I realized how excited I should be, and not take it for granted. Today I am very excited. If there are a few complications along the way then so what. Today I am very grateful!
Okay, I am getting off now. John and I have a lot to do today. We are going to the hospital to get some prescriptions filled. Then we are going to see if he can get a certain supplemental drink for him. We need to find out where it can be bought. John has lost 85 lbs since the transplant. The oncologist wanted him to lose weight, but that is too much weight. Hopefully the nutritional renal drink will be a prescription drink, and then his insurance will pay for it. I also need to clean up our room at Hope Lodge, and wash some clothes. So I am off.
Love you all lots, Krissy :)
Sunday, April 15, 2007
Saturday, April 14, 2007
Hi! I wanted to do a quick entry to let you all know that John is doing much better. If he had no fever during the night, they are discharing him today. That is providing they didn't find anything positive in his cultures that needs to be treated.
His fevers are finally starting to dissipate. He is going to be sent home on an oral antibiotic, so he will no long need IV antibiotics. He has been on two IV antibiotics in the hospital - Vancomycin and Cefepime.
I feel bad that I even mentioned this hospitalization to you all as it did not turn out to be something serious. I worried you after good news.
I was concerned when he was first hospitalized, but am only relieved now.
Hopefully John will be discharged tonight. Just in time for the biggest snowstorm of the year! Or what could be the biggest snow storm of the past twenty years, they say! I hope it isn't that huge. And I hope it doesn't last too long. We should be stuck at Hope Lodge for a few days when John gets out of the hospital, because his release about coincides with when it is supposed too start snowing. I am thankful that we have a safe place to stay.
So I will get back on tonight and let you know if he was discharged.
I also want to get back on today or tomorrow and write a little more on narcolepsy and answer a few of you all's questions.
But for now I have to run over to the hospital to see what the doctors are saying about John.
Okay, love you all, Krissy :)
Friday, April 13, 2007
Thursday, April 12, 2007
Yes, it is late. But I just took a four hour snooze, and am going to go back to bed shortly. I just want to have a few minutes computer time.
Gosh, so like what's been happening? We have been up here since Monday morning and John was hospitalized as soon as a bed became available. He had actually been having fevers since the Friday before Easter. He woke up with 101.5 if I remember correctly. I didn't write about it in my journal. I thought it was a little flu bug or something, and would go away, and why trouble anyone's Easter.
Anyway, it won't go away. John runs around 101 degrees. He has since Friday. This is starting to get worrisome. The doctors thought it was an infected PICC Line, but now they can't find an infction in the line. They did pull the line because it wasn't working, but when they cultured it it didn't show infection. So now they have no idea what the source of infection is. Or is it is a virus.
John is getting an IV antibiotic every other day. Not every day because he only has 25 percent kidney function and his creatinin level is too high. Too much of the antibiotic could cause him real kidney failure and he would have to start permanent dialysis, so they are walking a tightrope between curing whatever is causing the fevers and keeping his kidneys functioning well.
Well, that's the situation with him. We don't know a whole lot yet. When we do we will let you know.
Now I guess I will tell you something about me. I forgot to mention how my sleep test went. Suffice it to say the actual test was miserable, LOL. I won't go into why. It would be long and boring. Anyway, the test was two parts, to see if I had sleep apnea and/or narcolepsy. They called me back after about a week. I have narcolepsy.
Some people say, "at least you get to take a nap", or something equally as goofy as that! They don't know what it is like. Narcolepsy is a very frightening thing to me. I don't know how it is to other narcoleptics, because I have never met any. But to me it is frightening and frustrating. I can't drive. I fall asleep in a group meeting, and don't know if I have been asleep for thirty seconds or thirty minutes. I don't know what I have missed. I also fall asleep (say in my computer chair) and find myself slumped over and paralyzed and unable to move for a minute or two upon waking. While I know from past experience that I will eventually get unfrozen, I still am somewhat afraid and call out for John. I also fall asleep often while on IM with friends. If I ever stop suddenly chatting with you, you will know why, don't worry, I still like you, LOL.
Yesterday I was sitting in the hospital room chair next to John. I was holding a cup of coke with ice, and no lid. I fell asleep and dumped my coke all over myself. I had no change of clothes. No, narcolepsy is not a fun way to get an extra nap or fifty a day.
At any rate, I am not scheduled to see the neurologist for treatment until April 26. So I will just hang in for a bit longer.
Well, I guess I better go. Hang in there you all, Krissy
Wednesday, April 11, 2007
Tuesday, April 10, 2007
iJust checking in with you all. I hate to say it, but John is in the hospital. At Hershey Medical Center where he had his bone marrow transplant. The cancer is not back, but he is having complications from the transplant. Or perhaps the PICC line. The PICC line is something that was put in his arm so that he can receive chemo when he needs it (for the Hemolytic Anemia), as well as blood, or antibiotics. It is also used to draw blood from his arm, because he frequently needs a lot of labs drawn. Anyway, at this time the oncologists are thinking that the PICC Line is infected and that the infection has gone into his blood, because his fever is a little bit high.
I am staying at Hope Lodge (near the hospital). The times I am not with John at the hospital, I go there. Please don't send us any mail there yet, unless I ask you. I need to find out if this is going to be a prolonged stay or not first. I would hate for you to send a letter and we had already left. I am hoping this will be a short stay. It could be a few days or a few months. Who knows. But I will let you all know as soon as I know.
I don't know what else to say. I didn't know that he could still have complications after he was cured. Boy am I having a rude awakening here. Maybe I knew but chose not to think about it. I am really tired. I still have lots of faith, and am trusting in God, and leaning on you all, and my family. But I am somewhat tired. But I am hanging in there.
Okay, I need to go to lunch now, then get back to John. I'm hoping for your prayers again, as we have seen they do work miracles.
Love you all, Krissy
Monday, April 9, 2007
Will add more as I find stuff. It will be in the site favorites section!
The Planetary Society
The Project Apollo Archive
The Klingon Language Institute
Green Bay Packers
Stare Down Sally!
The Pittsburgh Steelers
The O'Reilly Factor
What Sci-Fi Character Are You?
What Not To Wear
The Butterfly Website
North American Butterfly Association
Virtual Drum Kit
Write On Einstein's Chalkboard!
Hubble Heritage Image Gallery
The Nine Planets
The Enterprise Mission
Nasa World Wind
Human Space Flight
The Planetary Society
The Project Apollo Archive
Hubble Space Telescopes
NASA Earth Observatory
Living Space Online
I will add more as I find stuff. The Links will me in the site fav section.
How To Clean Anything
Pictures of Places
The O'Reilly Factor
What Not To Wear
Hannity & Colmes
The Butterfly Website
North American Butterfly Association
My Free Recipes
Make Your own Glitters
Deep Sea Images Library
Road Trip America
Seven Wonders Of the World
Friday, April 6, 2007
I came across this poem I wrote in 1982 and wanted to share it with you. I
remember writing it. I was going through a particularly rough time and God, as
always, reminded me that I'm never alone. You aren't either. So sorry I have
DON'T CRY FOR ME
Don't cry for me, even when there is darkness,
For I've a Friend who is my guiding light.
When sleep won't come- and the thunder scares me,
He holds my hand and brings a calmness to the night.
Don't cry for me, because of all the hardships,
Each troubled time was but a stepping stone
To a better place where love's victorious,
Where I'll live in my brand new home.
So shed no tears, there are hands that guide me,
Along the road that I must travel.
And if I've been just a little bit faithful,
The troubles and cares will soon be gone.
I don't need to cry, though the tears are flowing,
I've a Friend who never lets me walk alone,
I just need to wait in our special corner,
He'll come and tell me about my future home.
Thursday, April 5, 2007
Hey guys, as you know I am having computer problems so most have stopped sending me things until I sort this out. Right now I am afraid to do too much. I have decided it is in AOL that is the problem. I have tried everything except reinstall AOL and you all know what a pain that is! I will have to reset everything and I am afraid I may lose something like I did last time. So if you all want to send something, go ahead as long as there are no graphics! I do not want to take any chances. After Easter I can work on it more. So send away and I will add it if not the day you send it, soon I promise. You can email Krissy but remember, John still has to make trips to Hershey so please send jokes and whatever except graphics.
John, another unit of blood has been donated! You all have a Happy Easter. You truly have something to celebrate now. I know this Easter will be a happy one for all of us. So enjoy yourselves and I will work on getting this computer back on track. If I can figure out what the heck is wrong!
Sunday, April 1, 2007
Saturday, March 31, 2007
Hmmm.... How do I do this without coming right out and telling you? So I will. Here goes...
John's cancer is not back. And he doesn't need a second bone marrow transplant. Yes, that's right. He is cancer free!
Let me tell you what happened. Yesterday at the appointment with his hematologist/oncologist, Dr. Claxton, John was told that the last test he had been given had resulted in a false positive.
Dr. Claxton came in the room all beaming positive, and excited. John and I were confused, and then he announced the news. John almost fell out of his chair. We were both in shock. We were happy, ecstatic, but in shock, LOL. It's like going from death to life.
Anyway, what happened was this. When the first test (a bone marrow biopsy) was taken three weeks ago, John was given a drug called Neupogen to stimulate white blood cells to keep his immune system up, right before the test. This effected the test and produced a false positive.
Dr. Claxton is positive it is a false positive and that the bone marrow cancer is not back. There is a reason for this. There were two other tests done at the same time as the biopsy. One was something called a Mixed Chimerism test. In that test it was determined how much of John's cells were his, and how much were cells he got from his donor (during the transplant). The test showed John is 100% donor!
The next test was taken to see how much chromosomal damage John had. When he had the bone marrow cancer before his bone marrow transplant, he had major chromosomal damage, which indicated severe bone marrow cancer. When he had this final test taken three weeks ago, a sample was sent to the MAYO Clinic. It was determined by them that John NO LONGER has chromosomal damage! Thus, no bone marrow cancer!
So they are sure the cancer is gone!
John does still have the Hemolytic Anemia, which he does require red blood cell transfusions for, but we will take that one day at a time. What the treatment will be, whether chemo or spleenectomy, we will see. Right now we are just rejoicing over the fact that the cancer is gone. He also only has 25 - 30% kidney function, but he can live on that for now.
So God is good. And you all are too. Thank you for your prayers. And thank you for everything.
I told you you would shout, LOL!
Love you all, Krissy :)
Tuesday, March 27, 2007
Sunday, March 25, 2007
Finally Lisa gets out of her car and approaches the guy in the car behind her. "I can't seem to get my car started," Lisa said, smiling. "Would you be a sweetheart and go and see if you can get it started for me. I'll stay here in your car and lean on your horn for you."
Hi Krissy and John! This is a gift from me and Tammy! Tammy can't upload photos from her computer very well right now so I am doing it for her. I wanted to introduce you to her furry brood. Oh, they are lovely! She loves them so!! She sent me these pictures yesterday and I fell in love with their cute faces!!! She said Amber swats at her at the computer and she can't work. Now look at this angelic, sweet face. Could she cause any harm? LOL
Here is Amber's twin Sabrina. Wow! Aren't they GORGEOUS!!...
Here are a mommy and son - Sara and Sebastian. Sara is the top picture. They look like they are talking, don't they? They have the same sweet face!
Finally, this is Simba! He is the Daddy of Sebastian (and I guess the hubby of Sara). Tammy said he disappears for a week or two sometimes. He is a LION, isn't he!?! She doesn't know how much he weighs, but he is very, very large! I bet he weighs almost as much as Michael!!
I hope you enjoyed her lovely kitties! Ask Tammy more about them! She loves her cats!
Tammy, thanks for sending me these pictures so I could make Krissy and John happy! They are cat lovers! Give your kitties special pets from our family today!