sept 1st

hard to believe that it is september already.

hard to believe that this is the start of the 9th month tim has been dealing with this (stupid) illness.

he had a head MRI tonight...just a follow-up requested because of the headaches and the sinus thing and then the neuro-guy wanted it done too...so off to the land of BANG BANG. he left with a terrible headache. he is in bed now and feeling a bit better-he has been having trouble sleeping at night. hopefully tonight will be better.

hope you all have a great day and a great holiday weekend...hope the rains don't ruin any plans. meg has her first field hockey game friday afternoon (we hope). i am feeling very old today-megan brought home a "PA drivers manual"...yes, she can get her permit to drive next month!!! her dad has survived all this cancer---but can he survive a daughter learning to drive??? we will soon see.

take care and thanks for checking in...

tim and tammy

ps...morning update-lots of coughing, still has a wicked headache, very little sleep...bummer.

wednesday already...

sorry for the delay...life just gets in the way sometimes.

we have gone to see the eye guy and he wants to put a GOLD weight in tims eyelid-very cool procedure (from a spectator point of view anyway). everyone (all the docs) seems to think that this would be a VERY good thing to do to keep the eye safe and infection-free. i think tim will call today to set up that procedure. (it will probably take a couple of weeks to get it done).

we saw the head of the neurology dept yesterday and guess what-they think tim has "bells palsy"-imagine that, but perhaps we should do a few more test to eliminate any other possiblities...imagine that. they are going to do some bloodwork and schedule a nerve conductivity test along with an EMG (which tim just found out is a test that involves sticking needles in his face-he was less than thrilled). this also will be a couple of weeks out there before it can be done-now would be a great time for a miracle and have him wake up with this facial thing GONE!!!

tims headaches are gone, which probably means that they were sinus related, but now he has a cold-like thing going on. sneezing, runny nose, achey...but we have him on yet another antibiotic for those symptoms. the oncology people still want the head MRI done and now so do the neurology people...so tomorrow late afternoon he has to trek to hershey again for that scan.

the girls are in full swing at school and sports and mom's taxi service is in motion-lots of motion. tim being able to drive has been a huge help while i am at work. infact-ashley hurt her ankle last night at soccer (again) and he may have to take her to a doctor or for x-rays today...always something to help us stay young (or go insane).

pray for me-my patience is running thin these days and having to deal with all this stuff PLUS working and dealing with three teenagers is becoming a challange.

well, as usual, thanks for checking in.

overall, things are going well as far as the transplant is concerned. we just have to get tim over this cold-like thing that he has going on. (we have heard that a cold that would take us a week to 10 days to get over-could take him months-lets pray that this is not the case.) he bloodwork is wonderful and holding steady. i will be in touch-

tim and tammy

ps...add a cough and stuffy head to that list...he just got up and feels like a train ran over him.

the weekend is over...

...and school has arrived!!! the kids are excited-i think-

tim had a really really rough saturday-probably due to a medication change and sinus infection-we hope. sunday was much better, although he is still stiff, achey and tired. (but so am i and i didn't have a transplant 101 days ago).

i am going on very little sleep so this will be short...

monday-we should find out how the scans turned out and he sees the plastic surgeon about the eye issue.

tuesday-he goes to see the neurologist and hopefully schedule the EMG

wednesday-speech therapy

thursday-an afternoon MRI

friday-speech therapy and meg's first FH game

in addition to this we have travel soccer practice and middle school field hockey practice and high school field hockey practice and booster club meetings and sports photos and the start of more homework and wednesday night church and tam works tuesday and wednesday.

so...i will try to keep up with the blog as we receive more info...

hope you all had a great weekend.

thanks for checking in

tim and tammy

friday is here...

and now we have more scans and more pills to take.

so far all the scans and bloodwork that he had (preliminarily) look fine. this is great.

but, we knew as soon as we mentioned the headaches things would get tense...it could be nothing related to the cancer or transplant so they are treating him for a sinus infection. or it could be something so he has another CT scan of his head tonight at 8:40pm and an MRI of his head next week. so we just wait.

off to field hockey practice...then to the car garage to get the oil changed and tires rotated...then who knows after that---maybe a nap. i have to work this weekend third shift.

thanks for checking in.

tim and tammy

off to the scans...

this morning we are celebrating 98 days post-transplant with no major complications.

we are taking bagels in for the nurses on 7-east and 6-day who we have gotten to know so well over the last 8 months. then scans at 9am and see the doc at noon.

tim has still been getting the really bad headaches which we will address today but we have really good news about the neurology-the "network" came through for us-he goes to see a neurologist next tuesday instead of next october!!!! GOD is good.

we have to get meg to field hockey this morning and go get the bagels...have a great day.

thanks for checking in.

tim and tammy

latest update

things are good.

tim's transplant coordinator says there is a "network" that she may be able to tap into for us to get an earlier neurology appt...we should know in a day or so.

i worked today and i work tomorrow. fred is coming down wednesday to keep tim company.

early night. kids are pooped from sports practices and i am pooped from work.

thanks for checking in.

tim and tammy

monday is here...

...and comcast has me back on-line. a storm must have come through on saturday evening and knocked out our internet service, but today we are up and running.

tim had a great saturday and a crappy sunday but today all seems to be pretty good.

today is high school field hockey scrimmage and middle school field hockey pre-season practice and speech therapy (one of the four he has left). we are going to try and get on a waiting list for cancellations to see a neurologist...but this has not been an easy task. our insurance company is working on that now.

we are still on schedule to have tims CAT scans on thursday and then hear about when they are going to do the bone marrow biopsy...we will all be glad when that is over.

hope you all have a great week.

thanks for checking in

tim and tammy

the weekend is here...

and so is another headache. tim has been getting pretty bad headaches the last couple of days. i think it may be from the steroid drops, he thinks it is sinus related...our transplant coordinator was out sick today-so we are going to give it another day or so.

the speech therapy people want us to meet with the neurology people.
the eye doctor people want us to meet with the neurology people.
the insurance people are insisting that we meet with the neurology people.

the neurology people are very busy people...first available appt is october 24th!!!!!!!!!!!!!!!!!!!!!!

(and that is not the first choice doctor-i don't think the first choice doctor has any openings until 2007-we have to go to palmyra to see someone)

so, what do we do...i guess we go to the last 4 appt of speech therapy that they are allowing and we pray for a cancellation or two or twenty. they are talking about putting a gold weight in tims eyelid...it has been open since april 25th...and they feel that it could very well become a good source of infection. oh, but they probably won't do that either until we see the neurologist.

so there we are...you want to know what to pray about..pray that all this bells palsy stuff just goes away and we can move on and just concentrate on the transplant stuff.

well, going to have to get some sleep. hope you all have a great weekend. the twins went to the beach with the youth from church for about 30 hours. they are having a blast. meg is recovering from week one of pre-season field hockey.

thanks for checking in...oh, meg's field hockey team is washing cars on sunday-come see us after church at the commerce bank in union deposit. (11am-3pm)

tim and tammy

a little glitch...

with the insurance company. just when we think that the speech therapy and e-stim might be working a bit for the bells palsy, we get a phone call at 7:30 yesterday morning that they are cancelling our appts because the insurance company can't decide if we can go back.

right now we are just waiting to hear-apparently the first 10 appts were ok, but now they need to re-evaluate. so we will wait and see.

this afternoon we go see the neuro-opthamologist in hershey to check out the eyes again. tims vision is pretty good but he has been having a lot of tearing in the one eye (infact it is either tearing or really dry) and really dry in the other eye-we think the dry is from some minor graft vs host issues because his mouth is so dry also and that is one of the common signs of GVH. so, we are just following up to make sure that there is nothing new on the horizon.

well, i have to get meg to field hockey practice.

thanks for ckecking in-we will be in touch.

tim and tammy

(ps-hi cindy k. we know you are out there and still praying)

wednesday update

another boring blog update for today...

tam has to work today
tim has therapy (but can drive there himself-yeah!!!)
meg has field hockey in the AM and the PM
ashley and kelsey are enjoying the last few days of freedom before school-soccer practice this week and then kelsey starts field hockey next week (for the middle school).

the kids are reading and studying the "summer packets" because they get tested on days 2,3 and 4

tim and i are re-learning our states and rivers and oceans and mountain ranges...and more about a girl named charlotte doyle than we ever cared to know. meg is learning about buddhism and greek mythology and school doesn't start for another week and a half!!!

everything is in full swing around here and it actually feels pretty good. some normal chaos is nice.

gotta go-enjoy your day-thanks for checking in

tim and tammy

very content...

...yes, there were over 300 very content friends and family who ate a bowl of spaghetti last night.

it is hard for us to express the gratitude that we have towards the people who supported this event. we were totally overwhelmed...i wish tim could have been there to see the people pouring in through the doors. it has been hard for me to relay to him how i felt last night. it was good that i was SO BUSY seeing everyone and getting hugs from everyone or else i would have been like aunt peggy and crying most the night.

all we can do is say THANK YOU to all. we LOVE YOU and we know that a huge part of our lives have been molded and shaped by many of you from back home. i was amazed to see how many people actually traveled quite a distance for that bowl of pasta--THANKS to all.

and i wish there was some way for us to thank those wonderful volunteer waitress's. they did a fantastic job-they will probably sleep until noon today. from set-up to clean-up and everything in between...GOD has blessed us with such great friends and family and a community that truly joins together in unity.

tim had a good day yesterday-it actually cooled off enough for him to walk abit outside last night. thanks for all your prayers and love and support. and as always, thanks for checking in.

tim and tammy

spaghetti anyone?

for all you berwickians...i hear many of you are having italian for supper!!!

our thanks go out in advance to all who are involved, and i hear there are MANY, in the spaghetti dinner at the maria assunta tonight. from the organizers to the servers to the clean-up crew to the bakers to the eaters to the ticket takers to the bake sale crew...and anyone we may have missed...THANK YOU.

a special thanks to aunt peggy who we hear has been the head honcho of this event...

thanks. thanks. thanks. thanks. thanks. thanks. etc.................

tim had a great weekend. he got to church twice again this sunday and for him that alone makes it a great day!!! i have to get meg up-her pre-season field hockey practices start today and then i should just run past a drug store and pick-up some tylenol and advil and heat pads and ice packs for her...she is in for a grueling two weeks of hard work. (but she loves it...)

gotta go-have a great day

thanks for checking in

tim and tammy

sunday

it is so nice having the weather back in the tolerable range again...
it is so nice getting up in the morning and knowing that we are ALL going to church...
it is so nice knowing that tim will be driving us to church this morning...

although we are far from the place that we were before this all started, we are definately seeing a shift in the right direction. tim's energy is much better now that the heat wave is over and he is starting to drive a little farther each day. the better he feels the harder it is to keep him aware of the fact that he still has so many restrictions yet. the hardest thing is to keep him out of the sun...pray for patience. these next few months as he recovers from the transplant will be frustrating for him. i am loving the fact that he has a desire to do more, but i hate being the bad guy and telling him that he can't. (not yet)

in some cases i suppose that if you push yourself to recover that is an ok thing...but in his case i think that slow and steady are what the doctors have ordered. and as most of you know, slow and steady were never words in tims vocabulary before this illness. but we have come this far...we will be able to work through this too. i just have to keep remembering that it is for his own good and he has to keep remembering that an infection could set him back WEEKS or even MONTHS>

have a great day-hope you all make it to church today

thanks for checking in

tim and tammy

the weekend approaches...

well, we have 2/3rds of the crew home and the other is due home sometime tonight.

tim is feeling pretty good today-infact...i believe that it is the first time since last november that he suggested GRILLING and actually followed thru. i came home from work and the grill was ready and the water for the corn was boiling and we had cheeseburgers and grilled tomatoes and corn on the cob. it was a wonderful dinner (mostly because i didn't have to cook it).

we are looking forward to a nice relaxing weekend...

thanks for checking in...

tim and tammy

road trip today

off to get meg today-it should be a nice travel day today.

tim had a nice day with his dad yesterday. they went to therapy and then lunch. he brought him down his favorite cereal-berry kix. then he even had the energy to make it to church last night...it was a good day for him.

hope you all have a great day-i don't know-once i get to forksville i am close to buckwheat cake country...i promised to take the girls to lunch...i wonder if they know what a buckwheat cake is??? i doubt they would be as thrilled as i would be...well, maybe i will just go dream about eating fried potatoes and buckwheat cakes smothered in syrup!!! there are some things that i just can't find in this city.

thanks for checking in.

tim and tammy

about 83 days out...

...yes, we are about 83 days past the transplant day-hard to believe.

we saw the doctor again today and he said that tim really looked good-i would have to agree.

he had his labs drawn and we have to call tomorrow to get those results, but he has been running wonderful.

we are going to schedule a CAT scan in about two weeks to check out the "innerds". prior to the chemo and transplant he had a lot of lymph involvement...they want to check and make sure that all looks well, and get a good base-line. i guess that is a bit nerve-racking, but we are expecting all the test to come back good. after the CAT scan they will schedule a bone-marrow biopsy.

i suppose that CAT scans and bone marrows will be in his future for a VERY LONG time...that is OK...at least he plans on being around for a VERY LONG time.

well, i am off to bed-i must work tomorrow. fred is coming down to take him to speech therapy and then out for lunch.

thanks for checking in-

tim and tammy

monday morning...

...we have a relatively slow day today. all the kids are somewhere today and tim and i only have speech therapy. he had a pretty bad headache most of the day yesterday. we think it is because we made another drop in the steroids. we are down to 100mg on one day and none on the next-his system is messed up alternating like that.

we spent some time yesterday with my parents and my brother and sister-in-law. that was a really nice day. my brothers ( i have three) have decided that they wanted to do something different for tim...so they have decided that it would be fun to have a golf tournament on his behalf. they have been working on this project for quite a while-i guess organizing these things gets pretty involved. it will be in berwick towards the end of september (the 23rd)...if anyone would be interested-i know they still have some openings for individuals, four-somes, hole sponsors and prize donations, ect...i don't know that much about how a golf tournament is run, but i know this one includes a nice filet mignon dinner and a silent auction so i guess i am going to try to get there myself. if anyone would be interested in more info i could mail you a flyer or get you in touch with my brothers-just shoot me an e-mail or blog comment.

well, have to get moving this morning...thanks for checking in.

tim and tammy

ps...happy birthday SM

the weekend is half over already

everything is still good.

tam is working third shift this weekend which makes things a tad bit off schedule around here...but we are doing OK

kelsey is eating at crabby mikes in mrytle beach-we are all jealous.
meg is packing up for field hockey camp.
ashley gets to see the yankees play baseball tomorrow.

tim is a little out of sorts today-i think he wants to be with kelsey.

i am going to try and catch a quick nap before i go in tonight.

thanks for checking in-sorry nothing much to report.

tim and tammy

another friday has arrived

well, kelsey is on the way to the beach and on sunday megan leaves for field hockey camp and ashley is going to a yankee game...mom and dad are not!!! (we must be doing something wrong)

three weeks has gone really really fast-tam works nights this weekend again...friday night and saturday night.

speech therapy was same old same old...he goes back again today. (he drove over-six miles only, with me in the car, for the FIRST time in a LOOONG time.) still alittle shakey, but he did OK. things are going to come back to semi-normal eventually...slowly, but eventually. we are taking "baby-steps" in many areas and he is doing pretty well, frustrated at times, but he is still hanging tough. for those of you who know tim well-SLOW AND STEADY were never words that you would have found in his vocabulary-pray for me.

well, we lost one child last night and picked up two more...we must be doing something wrong...i am going to try to go back to bed for a while.

thanks for checking in-i hear we are having a chance of some cooler weather today-that would be nice if it were under 90 today.

tim and tammy

ps...happy birthday BRAD

thursday-early

i guess after midnight it is officially the start of a new day.

tim didn't leave the house wednesday-which makes him crazy...the heat outside is so hard on him...the day before we did some running around and he was exhausted after that. we actually had a day of no appts for him...so i made some eye doctor appts for the girls. i doubt that i would know what to do if i didn't have to go somewhere each day. new glasses for the start of school. (oh yeah)

kelsey leaves for the beach later on tonight...she is excited. not packed yet, but excited.

well, i heard the dryer stop so off to the laundry.

thanks for checking in-stay cool however you can

tim and tammy

its UGLY outside...

...i know that i am not a huge fan of HOT, but even tim is minding this stuff. megan just gave me the update that at 11:08pm the heat index is still 96. YUK!!! thank goodness for air-conditioning.

monday morning we had a day hospital appt and that went very well.
monday afternoon we had a speech therapy appt and that went slightly better than before.

tuesday i had to work and then we had a 4pm clinic appt to see a doctor...that may not sound like a strange statement-but tim has not actually seen a doctor since he was discharged in early june. they have been monitoring his care through a nurse practitioner and have gotten updates from that. the appt went very well.

some parts were good and some parts were scary...but overall we think it went well.

good parts-they are going to continue to wean him off the steroids
-they are going to consider letting him drive "short" distances
-they are going to graduate him from the day hospital to the clinic because there are sicker people than him who need his spot.

scary parts-they gave us an antibiotic to carry with us at all times incase he should spike a temp or get the shakes, and we were told that we are to take the pills immediately and get into the car and drive the the ER and call them on the cell phone on the way there. (i guess we forget how immunosuppressed his system really is).
-they are soon (in a couple of weeks) going to repeat the bone marrow and all the CT scans and "re-stage" his disease...?? it was a stage 4...i know that there is no stage 5, but is there a stage ZERO??

so...it was an eventful couple of days i guess. all in all things are progressing in the right direction. although we are in for a long night tonight...that bladder thing is back again (like the fourth time-yuk). pray that he has a restful night and it doesn't linger for long. he is in a lot of discomfort right now.

thanks for checking in-

sorry i missed a day in there.

tim and tammy