home alone

at 4pm eastern time today, my brother steve and his 4 kids left for their home in carlislie, arkansas. this marks the first real amount of time we (karen, kyler, jenna, and me) will have been home alone for any amount of time since Aug 20th. there was one monday after karen's parents left in November before my aunt and uncle came but we will have 3 days here before we go to duke for a 3 day appointment, and then a couple of days before a friend from arkansas comes and stays for a week. when she leave on 16th, she will be the last scheduled visitor/helper we will have. starting jan. 18th we will have to figure out things on our own again (like we have for the last 21 years). i am not sure if i will know how to act without these people here, but there is a side of me that understands we need some time to ourselves to figure it out. so many people are on the edge of their seats ready to help us, it is great to know there are so many willing and ready at a drop of a dime. this is good because i am not sure i could do this alone. feel free to call karen during the school week to talk to her, but call on her cell line it is cheaper for us.

today's events

today karen had the MRI that is going to determine if this treatment is working. things seem to be really good so i hope that is a good sign that things are working.

my brother steve and his 4 kids are here right now. karen feels safer using the "guest" bathroom for some reason. karen does not pay attention sometime to if the lid is down or not, and has not had to in a long time. the lid is normally up and the seat is normally down. someone put the lid down and she didn't notice that it was down...when she sat, she slide right off. she has a big bruise on her elbow, and her pride is hurt a little but i think everything is OK. the small thing you have to think about is almost overwhelming.

Jan 4th we take the MRI films with us to find out...pray please

no news to report

there is actually nothing to really to talk about today.

wow

Thursday Dec 24th, I took my uncle paul to the emergency room here. he could not walk and by the time we got to the ER he could not even move his legs and the pain was almost unbearable. He had called the neurosurgeon that had done 2 surgeries on hi neck back in St Louis for advice. he told us to go to the ER and get an MRI. The ER doctor told us there were no symptoms to warrant an MRI, he could only treat him for pain (we could only guess that he thought the pain was the was causing the lack of motion even though we begged for and demanded an MRI...he said he just could not do it with the symptoms). My aunt Georgia was also coming down with some kind of cold and was not feeling well. we had a big discussion to either take my uncle to a different ER around here, or just get him home to st louis and let them take care of him. the final choice was for me to help get them back the STL. Georgia could drive but could not help Paul in anyway if he needed to get out of the car for any reason. i quickly called some people (Kim Chapman, Doyle and Bonnie Chapman, Lori Roark, Terri Tumlon, and Ester Baker) who gladly helped with Karen here while i drove to STL. My aunt and uncle bought me a one way ticket to fly back to Atlanta. So, just after opening presents on Christmas day, making sure that karen had her chemo and lunch, we drove to St. Luke's Hospital in south STL (10 hour drive) and arrived there at 9pm central time. by 4 am the ER doctor there had ordered an MRI which showed something at the base of his spinal chord that looked like a bulging disk, AND a growth around a kidney. a neurosurgeon was called in who did emergency surgery to remove the disk (8am) by noon the next day he was back in his room resting from the surgery...it should take a shot amount of time for him to get back his movement in his legs from rehab. the kidney thing is something they will have to deal with in the next few weeks. i flew back in to ATL 9pm last night and Coach Worsham picked me up and brought me home.

Steve my brother and his kids showed up at 3 am for a short visit this week

what a weird house i live in.

what is wrong with this house

karen and i were discussing in the car on the way home today from therapy, how people may not want to visit this house. karen's problems aside, my aunt has come down with laryngitis and a cough, while my uncle paul cannot move right now with lower back problems that we have no idea how or where it came from. so, we have nearly immobile karen, uncle paul in so much pain he is thinking about calling 911 and going to the ER, and a aunt who could not talk to you very well.

my aunt wants to make a reality TV show about us called "coach, Cancer, kids, and the people that stay with them" it might be funny.

maybe we are cursed!!

not so great day

karen has been very tired and and sluggish today. she has said her stomach has not been feeling so good. overall though not feeling well, no throwing up or diarrhea so i guess it could have been worse.

on a good note, we took family pictures on the McDonough square today in santa hats...i will try to post them here and on facebook as soon as i get them off the camera

1st bad day

today was karen's first really bad day on the new chemo. she didn't feel well today and threw up her lunch. her left arm has a muscular lock up at the elbow joint, and it has been hard to message out. her rash looks terrible...jenna had a chorus concert tonight that my aunt and uncle took her to, i am staying home with karen to make sure she is good. they will video and take stills of her singing for us. hope

rash is not fun at all

the rash is on Karen's face very bad. it looks like the worst kid you ever saw with the worst achene ever. it is very itchy to karen, and she is not liking it at all. duke says it will be bad for about 2 weeks then it will get better but not go away (as long as she is on the chemo she will have the rash). hopefully this will pass fast and she will not be to uncomfortable the next few weeks.

rash

Well, they told us there was a 99.2% chance that karen would get a rash from one of the chemo types. we were given an antibiotic and cream for it when it started. it has started. it will cover her face and upper chest like achene. so, karens face looks very teenage-ish right now. so, now she has one more pill to take twice a day with all the others.

karen has it seems like a million pills to take but it is just 2 types of chemo's but they had to divvie up the dose to fit pills they had. it ends up being 25o mg or one and 175 mg of the other.

24 hours in

two days worth of treatment and karen is doing great. so far no diarrhea or nausea. she does not even seem to be getting too tired, and after a full day of therapy, and Christmas shopping she is very, very talkative tonight...imagine that. i understand that she may get a little tired as things go and there is going to be a rash sometime soon, but if things stay close to what they are now i would be super happy.

tomorrow is the day

karen's new chemo pills arrived today and when i say pills i mean pills...there are 9 of them to take every day. i guess they only come in certain dosages so to get the correct amount they found away in 9 pills.

there is about a 100% chance that a rash will develop on her chest and face, but nothing crazy. there is a pill and cream for that when it comes. they told us that the nausea has not been a problem in most people, but that she may be tired after the pills.

jan 4th and 5th is our next visit to duke, and hopefully we will hear that everything is going great.

two steps

when i got home tonight karen was standing across the room, and demanded that i come to here. i did, and she wanted to walk without her walker. she grabbed my hand and started to walk with me. she was doing so good i told her to walk without holding me and she took 2 steps without me. it was so great to see and she was so happy. she told me she had done a few steps earlier with my uncle by her side, too. things are going so good, i cannot help but pray even harder that this chemo will be a long term answer not a short one.

mrs independent

my aunt and uncle bought a kitchen cart for karen the other day. i will try to get some video to post here of this but this cart has helped karen be very independent. she leaves her walker where the cart is and then uses the cart as her balancing item. she then can get things from around the kitchen and take it to the table where she can fix it and eat or whatever she needs to do. she looks great doing this.

oh by the way

while we were at duke, my uncle pual and aunt georgia who are staying with us, along with the kids put up Christmas lights on the house and our tree. karen loves this kind of stuff and was very surprised and happy when we drove up.

just like karen's parent, they are doing a great job.

proud of her not of me

i was very nervous going into this trip to duke for alot of reasons but one main reason was the use of bathrooms on the way up there. when you are driving 6 to 9 hours there are going to be bathroom breaks, and i could not guarantee single restrooms where i could go in and help her...she would have to walk in herself and get everything done. i was always worried that the floors may be slick or the safety bars for handicapped access are on the wrong side, or some other problem would occur where she might get hurt in the process. well, i was very proud of her and how well she did. not one problem really to speak of. i am also reassured to the kindness of people in the world. in this day and age where people can be so nasty, we did not run into any nasty people but people who were very helpful.

on the other side of the coin i have been noticing over the last 3 months that i am not very good at my role in all this.

now the particulars about her treatments to start next wednesday. she is going to do the drugs from the last post. she will take them everyday. every 28 days we will travel to duke for a two day workup to check her progress. the pills will be mailed to us and she will have to do local blood lab work weekly and those results will be sent to duke. if the drugs do their job and control the tumor she could be on them for up to a year, but no longer (we were told that no chemo is every really given more than a year). both of these drugs are FDA approved for other types of Cancers, but this trial is to see how they work together, and on brain cancer. they have shown great things in the past, and seem to have been doing good in this trial so far.

last thing, i don't post some information that i am not sure if people want to hear about. things that you might be wondering about. if you have specific questions please ask, or if you want to hear more about other stuff, please ask.