counts are dropping...

as expected his platelets are starting to drop. we went from a 65 to a 29 in two days. chances are pretty good that he will need a platelet transfusion on thursday afternoon. (he starts "leaking" at about a 13).

his red cell count is still holding...that will probably start to drop this weekend.

his stomach is a mess...yesterday was a very bad day. he was sitting at the breakfast table eating his special k (like every other morning) and with spoon in hand he started. no warning...just sick!!! we had a day hospital appt in the afternoon so with bowl in hand we headed to hershey. they took one look at him...put him in a bed, grabbed him a blanket, started an IV of fluids and stomach medicine and something to calm him down. within about 34 seconds he was asleep. GOD bless those nurses. his night was still rough but he at least had a break for a bit in the afternoon.

each time we get another round of chemo the side effects get a little worse. although he feels like a train wreck he knows that in a few days things will start to improve...my job is to just keep things calm and consistant. any waves in the day kind of freak him out a bit...more chemo effects.

while he was in the hospital this last time he lost a cap on one of his back teeth. (lost in the sense it fell out...we still have it). the problem is that he is not able to get any dental work done because of his falling counts and chance of infection. the other problem is that he is at risk of an infection if he doesn't get it fixed also...kinda a catch 22. one of the major side effects of having all this chemo (and the transplant) is that his days of good teeth are over. his teeth are breaking apart and filling are falling out and his gums are shrinking and his nerves are sensitive...he will eventually have to consider having them removed. the problem is that day is not in the near future. if you are looking for yet another thing to pray about...like you don't all have enough...pray that his teeth can hold up through these next few rounds of chemo. he has a hard enough time with wanting to eat sometimes that we don't need a another reason for him to not eat. plus he is high risk of infection with all his mouth issues...and the ulcers haven't even started yet.

this is just one of the many "little" things that tim has to deal with on a daily basis...if i were to tell you everything you wouldn't believe it...the man is a mess. i often wonder how much longer he can go through all the "stuff" he goes through. he has been a real trooper. i am amazed at the way he has handled all this "stuff" and still keeps fighting. (we both have our bad days and feel like we want to quit, but somehow we get through them and move on to the next day) and YES...if you ask him how he is doing next week he will still say...ok...could be worse.

enough rambling for one morning...hope you all have a great day.

thanks for checking in.

keep praying.

tim and tammy

cold and wet...

...that was the forecast of the soccer game tonight. they were not wrong...although the rain held off until half way through the second game which was nice. both dewalt daughters are healthy and back on the field (finally).

my parents came down to see tim and watch a game or two...it was too cold and damp for tim to make the game. he stayed home with megan.

the first few days after the chemo are rough...hard to explain how this chemo messes with him but trust me when i say it is unpleasant to live through. the only plus side to these rough days is knowing that we have survived it before and in a couple of days he will start to feel better.

counts will start to drop soon and he will be on frequent trips to hershey for blood and platelets. we go in tuesday at 1pm to check on his counts and get him some fluids. you guys should know this routine pretty well by now...first the drop in the counts and then the ulcers and transfusions and then the counts begin to rise and we start all over again.

not much new or exciting to blog about.

thanks for checking in.

tim and tammy

he goes in...

...he comes out.

tim was admitted thursday afternoon for another round of chemo. i brought him home again saturday late afternoon. it is so amazing to me how 72 hours of chemo can totally transform a person...that is some wicked stuff.

as most of you know that was chemo #4 and yes...it was the ICE again.

you know the old saying "you can look at the glass half full or you can look at the glass half empty"...i have always prided myself on looking at the glass half full and being very optimistic...but recently tim and i have begun to question the reasoning behind why they keep giving the same chemo if the cancer tumors keep coming back (and i am sure we were not the only ones with questions).

so...we decided to get the doctor alone and get some answers...one should be careful sometimes what one asks for...it would take too long to go into all the questions we asked and all the answers we got but the short version of the conversation goes something like this:

we wanted a better grip of the BIG PICTURE...he pretty much told us that this is the real deal. there is no BIG picture. life is taking one day at a time. if it is a good one enjoy it. if it is a bad one...then it is a bad one.

we were looking at the glass half empty...he is looking at it half full. because of the aggressive nature of tims lymphoma he is thrilled (that is probably not the word i am looking for but you know what i mean) that we are getting 25-30 days between chemotherapy until the tumors act up again. i asked if that meant we were going to keep getting the ICE and he said absolutely. the other (previous) chemotherapy regiments are basically the same drugs in different ratio's. tim does pretty good on this chemo so we are going to stick with it for awhile. this cancer is very aggressive and each time it returns it is a little bit stronger. we are going to keep hitting it with chemo until it decides it has had enough or until the chemo doesn't hold any more.

we really had a heart to heart with our lead oncologist and although we didn't like everything he said...he didn't say anything we weren't thinking anyway. sometimes a good dose of reality is a good thing. we were thinking lets do this and lets try that...it is not as easy as one would think. they are not just guessing with our treatment plans...these doctors are some of the best and have given great thought to our individual situation. they have the knowledge and we have the prayers...

i was reading last night and came across this:

WE ARE PRESSED ON EVERY SIDE BY TROUBLES, BUT WE ARE NOT CRUSHED AND BROKEN. WE ARE PERPLEXED, BUT WE DON'T GIVE UP AND QUIT. WE ARE HUNTED DOWN, BUT GOD NEVER ABANDONS US. WE GET KNOCKED DOWN, BUT WE GET UP AGAIN AND KEEP GOING. 2 CORINTHIANS 4:8-8 NLT

i have a favorite saying..."welcome to my world" and this week this verse seems to sum it all up pretty well. it has been a downer kind of week but it is what it is...we can't quit now. the doctors will not quit so we will not quit.

tim will not be thrilled that i posted this blog tonight. he likes to keep things kinda light and fluffy but i have my days where i NEED you to know where we are. things are not always light and fluffy. sometimes we have really SUCKY days. sometimes we don't sleep well at night. somedays we cry alot. somedays we want to get in the car and just drive...and drive and drive.

tim is going through a rough time being post-chemo right now. his emotions are short circuited after the chemo. pray for him. pray for me. pray for the kids. pray for the parents and family and friends who all feel so helpless. and most of all pray for healing.

it really helps knowing that you are all out there in cyberspace cheering us on and supporting us in so many ways.

thanks for checking in.

tim and tammy

422

yes, that is the number of times i have posted on this blog site!!! you would think by now i would have run out of things to talk about...i wish!!!

it is official...we are going in for another round of chemotherapy on thursday. i wish i could tell you exactly which kind of chemo, but for now we are still scheduled for ICE but that is subject to change throughout the day. tims platelet count did not reach the minimum level (they want it to be at least 75 - we are hovering around 57) but the doctor has decided we had better not prolong the admission any longer...so in we go.

tims arm tumors are getting bigger and more painful. hopefully they will come up with some sort of plan between now and tomorrow afternoon. the ICE will shrink them but it appears to not hold for very long...the mighty minds of hershey med are "giving it some thought" and will let us know tomorrow.

tim is kinda quiet tonight...but that is expected. we finally are starting to enjoy this warm weather and he has to go back into the hospital...bummer. we are both discouraged with the tumor growth. he will miss a few soccer games (which he hates to miss).

i think today he was trying to make up for time he will lose...this afternoon we swung by the middle school and saw megan helping teach field hockey to 6th graders...we watched a few minutes of the high school girls soccer team practice...we drove to the high school and watched a whole varsity girls softball game (which by the way we have no biological children playing-just friends of our children)...then we went back to the middle school and watched the last few innings of the boys JV baseball game (which by the way we have no biological children playing-just friends of our children).

at first i was thinking..."like we don't have enough sports to watch with our own kids..." but then i realized that he loves the sports and loves the kids and loves being outside (when it is warm). i guess it didn't kill me to watch a few more hours of high school sports if it makes him happy.

well...it is getting late and i am way behind on stuff around here...gotta get going.

keep praying.

thanks for checking in.

tim and tammy

ps...ashley PASSED her impact test this week (by 0.8 points). she practiced soccer tonight for the first time in weeks (and no ambulances or atheletic trainers or head injuries or sprains or bruises or...). pray that she can condition enough to try to get some playing time these last few games.

update...

we are sometimes feeling like we are running in circles and never really getting anywhere. this last week was a very "downer" week to say the least. we haven't really said much to anyone about tim because we still have not seen the doctor and tim doesn't want to play 20 questions with everyone, but here goes anyway:

as you all know tim has been growing these lymphoma tumors in various locations in his body but they have ALWAYS been on his left side (kinda odd). since his second relapse of the lymphoma he has received 3 doses of a chemotherapy called ICE. we are due to go in for the 4th dose as soon as his counts recover...probably on this thursday. (platelets today were back in the 50's). recently he has noticed that the original tumor on his left arm has reappeared and for the very FIRST time he found a tumor on his RIGHT arm.

now as the kids would say...you don't have to be a rocket scientist to know that this is probably NOT a good thing after just having 3 rounds of chemo.

if you all are like us we are FULL of questions...what does this mean? will we still get more ICE? is it bad that the tumor came back? is it worse that the new tumor developed on his right side? how are they going to stop these tumors now? this list just goes on and on and on...

unfortunately we have NO ANSWERS for you today...and probably not tomorrow either...

sorry about that...but we promise that when we know we will let you know.

not much more to say...good days and bad days.

keep praying...especially for WISDOM. we feel that some major decisions are going to have to be made about treatment options and we all need WISDOM...the docs need it and tim and i need it.

pray for tims SPIRITS to stay above water...it has been an emotionally challenging week for the whole family (kids included). the kids are the ones with some of the best questions...we just wish we had some of the answers. sometimes i wonder how they keep going at the pace they go...but then i think it is the best thing for them. we have a very OPEN line of communication with them about the cancer and the treatment options...no secrets. i think when they finally realized that we were not hiding anything it made it easier for them not to worry as much.

they know they can ask us anything they want...about the cancer, about the treatment, about the doctors, about the odds of beating this thing, about death, about life, about quality of life, about prayer, about healing, about anything they want!!! it does get interesting sometimes, but always ends up a good thing. we feel knowledge is important and trust is important and honesty is important.

well, enough rambling for one night...three in bed and two to go.

hope you all have enjoyed this wonderful weather the past few days...and even the rain was enjoyable today because i LOVE thunder storms.

thanks for checking in

keep praying.

tim and tammy

delay...

platelets were only in the 30's...can't do the chemo.

we are probably looking at next thursday for admission but that is only a guess.

we will keep you all informed when we know anything.

keep praying...things are a little "unsettled" right now.

thanks for checking in.

tim and tammy

secousse

the french word for concussion.

tim and i are in hershey at the hospital and the cell phone rang.

the phone call went something like this:

hey mom-this is kelsey-ashley got dropped on her head in french class-she has a concussion and you have to come get her-thanks-bye.

tim and i just look at each other and sigh.

the whole story goes something like this:

ashley had JUST been cleared by the trainer to play soccer again following a knee injury. she was so excited and was on her way to french class and the trainer was walking with her. i guess she walked into the room and a gentleman friend (i use the term loosely) came up behind her and picked her up off the ground (in a joking loving kind of way) and was holding her in the air. another boy came behind him and knocked his legs out from under him. he came falling backwards and she came falling backwards and she landed HEAD_FIRST on the ground. (yes, this is high school)

she was dizzy, lightheaded, nauseaus and had one wicked headache...off to the nurse she went. she was examined by the nurse and the trainer and they agreed that she had a minor concussion. sleep 3 hours and up for 20 minutes. sleep 3 hours and up for 20 minutes. NO SOCCER until cleared.

saturday the headache was a little better but she had a stiff neck.

on monday she took her IMPACT test and FAILED. it showed she had a 30% memory loss compared to the one she took in the pre-season. NO SOCCER until cleared.

she is feeling a lot better but i guess until she can pass that test and go 48 hours without a headache they will not let her play. (she is female and 14 and that could be her junior year). we really feel bad...she went out for the soccer team and turned into the side-line ball girl and sideline support. but she had been a real trooper...we are hoping that she recovers soon enough to get some playing time in this year...we are over half way through the season already.

they say that it (raising children) never gets easier...just different!!!

thanks for checking in.

tim and tammy

ps...tim goes back to day hospital on wednesday afternoon...we will update when we know anything.

colder weather is here...

...again. tim is bumming. he liked saturdays weather a bit better than tonight. he actually got a little sun (a little too much sun) at the twins soccer game saturday morning. and now we are packing blankets and winter coats for the game on monday night.

tims bloodwork is acting up a bit...the counts have usually leveled off by now but instead they have decided to take a dive. his platelets had topped off at about 70 and then dropped to a 30 on friday and today down to a 24. they need to be holding in the 75 range before they will start his chemo...we are not sure that we are going to make it before the thursday deadline.

we will let you all know if his counts recover in time to go in for chemo this week or if they are going to have to postpone...i think the doctor will let us know after another couple of days when we get re-checked.

i worked the weekend and am tired so i am signing off...if i have the energy later on this week i will let you all in on a story of how one of our kids got a minor concussion in french class on friday. (she is doing much better and will hopefully be cleared to play soccer this week). it is an interesting story for sure...

thanks for checking in.

tim and tammy

not much new...

wasn't yesterday a beautiful day...

tim was able to get to another soccer game and this time he even sat outside to watch the game.

we have a day hospital appt this afternoon for some bloodwork and check-up. so far we are still on schedule for admission next week for another round of chemo.

keep praying.

enjoy your weekend.

thanks for checking in.

tim and tammy

looks like one more time...

our appointments are getting fewer and farther between...this is a good thing. tims counts have risen and are holding in a respectable area. his liver, although still in the high range, has seemed to settle a bit. it is kinda nice to have more than 48 hours off without having to drive to hershey for an appointment.

the latest chatter is that tim will probably be going back into the hospital next week for a 4th round of chemotherapy. (he is less than thrilled).

the girls are still running us around everywhere with soccer and kelsey is getting quite a bit of playing time. ashley is trying to rehab her bad knee and get back out on the field...hopefully in time for the saturday game. high school girls soccer is a ROUGH sport...you should see the number of injured players this team has...its crazy. lots of banging around, lots of twisting and turning, lots of trips (to the ground)...very rough on the joints. (i have to take a couple advil to just watch the girls out there...)

megan just finished up an intense physics project at 2am tuesday morning and started with a wicked stomach virus at 5am...poor kid. she was so sick all day yesterday. we started to see some improvement late last night, but she is wiped out.

enough for one morning...got to get the kiddos moving.

have a wonderful day.

thanks for checking in.

tim and tammy

another weekend here and gone...

saturday tim got to watch his first girls varsity soccer game...it was chilly and windy but he was able to park his warm van in the endzone area and could see the whole game from the car. he has really been "pouting" that he has had to miss all the girls games due to crappy weather or him being in the hospital. and we WON...yeah!!!

Kelsey played the whole varsity game (pretty good as a freshman) and Ashley unfortunately was on the injured reserve list. she had a bad collision with the goalie in the thursday night game against west perry and messed up her knee a bit. hopefully she will be back soon.

then as soon as the game was over we headed back to hershey for a 1pm day hospital appt. he is still needing platelet transfusions every couple of days but his other bloodwork seems to be holding ok. we are at the day hospital every other day often for hours and hours. (it is starting to get a bit old). we love the staff there and we enjoy meeting other people (well, tim more than me-no surprise there) but we are both starting to get tired with the whole thing.

i am not sure but we may be the patient with the MOST senority...how sad is that!!! not the oldest in age (although sad to say there are many younger than us) but the ones who have been struggling with this cancer thing the longest. there is a lady in there now who is waiting on a transplant and was recently hit with bells palsy (how bizarre)...she has lots of questions for tim. she says they share the same smile. another is under 20 and tim and him fight over the NFL teams...tim says dolphins (chemo brain) and he says cowboys (more chemo brain). tim keeps telling him that he is going to bring him in a dolphins hat. another young lady wants to teach tim how to cross-stitch to pass the time away. the newer patients see us and it is obvious that we know the routine and nothing really rattles us and they begin to ask us questions. they don't always like the answers but you know tim...he always keeps it light and upbeat as he can. the nurses are all watching us raise our children...they ask a million questions about them and enjoy our stories. (we do have some interesting ones). they know about the soccer team and the 9th grade projects and the honors physics roller coaster project. they know our kids and they know our parents. they know when tim is "fibbing" and saying he feels "all right" and they know when he wants to talk and when he wants to just sleep. and most importantly they all NOW drink PEPSI products. go tim!!!

as much as this experience has changed our lives forever...i am ready for it to take a turn for the better. someone recently asked me if i thought this was how it was going to be forever...do i think about it? everyday!!! will i stop praying and believing for a miracle? never!!! if it is our life-long term-we will survive (what other choice do we have)...but please keep praying for that miracle.

have a great sunday...hope you made it to church today.

thanks for checking in.

tim and tammy

only platelets...

tuesdays appt was relatively short compared to the weekend...only 3 hours. his platelet count is still hovering in the teens so they gave him another unit yesterday. thanks to the transport teams that have been able to run him around while i am working.

you will all be glad to know (i know that i am glad) that we finally got that 3-D puzzle together which means that we can now get back to doing other stuff around the house...like vacuuming and dusting and laundry and eating...it was one of those puzzles that you couldn't walk past it without stopping to put a piece in and hours later you are still sitting there. even tim got involved and he HATES puzzles. infact him and kelsey were fighting last night over who was going to put in the last piece. (sad to say the 44 year old bald man won).

well, i am off to work.

thanks for checking in.

tim and tammy

sorry

been kinda crazy around here...in the last few days there have been outdoor soccer games, indoor field hockey games, soccer practices, church, hospital appointments, tam working the weekend, plus a 3-D puzzle that the family is obsessed with finishing.

tim had a day hospital appt on sunday and i think he hit the jackpot with needing the most things that day. they gave him IV potassium and his regular liter of IV fluids. they gave him a platelet transfusion and they gave him a blood transfusion which is always 2 units of red cells. it was a long sunday afternoon.

i am leaving now for work and he is coming down a bit later for another day hospital appt to check out his levels. this is the post-chemo week that is the most intense. he has no white cells to fight off infections. he has no energy because of the low red cell blood counts. he bleeds alot because of the low platelets. his immunosuppressed state has his mouth and throat all full of ulcers and he says on a pain scale of 1-10 it is about a 15 to swallow anything. (thank goodness for morphine). keep him in your prayers this week...it is going to be a long one.

well...gotta get to work.

have a great day.

thanks for checking in.

tim and tammy