what does a 14 year old think?

i thought i would let you hear what my youngest (by about a minute) has to say. she recently entered a first person essay into a "fine arts" writing competion for church:

“Father, why you?”

I celebrated Christmas with my dad’s arrival home from the hospital. Things were going pretty well until about six days later which was New Years Eve. There was a phone call. They said that my father had to be admitted to the hospital in the next hour. What could possibly be so bad that he would have to be admitted within the next hour? He had so many things wrong with him. They did some testing and found cancer in his blood, liver and many other places. The cancer, after having its name changed many times, it ended up being Large B-Cell Lymphoma. This type of cancer that my dad had was only found in one other person…a person that is no longer living because of it. My friends and family were the only things I had to keep me going. My mom tried to keep things as normal as possible for us. I went to a party that night but it just wasn’t the same. Only three people knew about the cancer going into the party but by the end of the night everyone was asking questions about my dad. Soon I could hardly take it. I hated it. It was so hard for all of us. School soon came and I had to stand up and face everything that happened so fast. The fear of losing my father, and facing my friends, and trying to act like I was okay was a lot to handle. It was hard for the first few weeks knowing my father had a better chance of dying then making it through this. But, soon I became very good about placing a fake smile on my face then ever before. After facing about three months of chemotherapy he was ready for a stem cell transplant. The new cells were his only chance of surviving and came from one of my uncles. It only put him into remission for a short while.
About 11 months later my dad went in for some blood work and something just wasn’t right. He wasn’t feeling good so he got a PET scan and some biopsies. This was going to show us if the cancer was back. I waited. It took over nine days until I finally got the news. It was back. His test results came back showing that he had numerous cancerous tumors in his chest. The doctors gave him little hope and very few choices but he decided to try the chemo again. My dad got weak and lost a lot of his strength. I began to lose hope again. I didn’t want to worry anymore and I was sick of everything. Seeing my dad get weaker and weaker was so hard. He was in and out of hospital week after week, month after month. After a few rounds of chemotherapy, some radiation treatments, and two Staph infections, the cancer was once again out of his body. My dad still has good and bad days. He still is ill and weaker than he would like to be. Everyday I wonder how long the cancer will stay away this time. Every ache and pain makes me worry. Every time he gets a cough or a head ache I worry. I wonder if it will always be like this. I wish I had the same kind of hope my dad has. His words still to this day are “I wasn’t able to leave this world yet. My life isn’t complete. My girls still need me and I still need to protect them from those boys out there. God kept me living for a reason so I can share my testimony with friends and family everywhere. My life journey just isn’t complete yet”. With a smile on his face and a positive attitude, he keeps these days going by without a single tear of sadness.
Many times throughout these rough times I find that praying and reading the Bible has given me hope. One of my favorite passages in the Bible that relates to my life today is found in Psalm 139. “You chart the path ahead of me and tell me where to stop and rest. Every moment you know where I am. You both precede and follow me. You place your hand of blessing on my head. I can never get away from your presence! If I ride the wings of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me”, Psalm 139: 3, 5, 7, 9, 10 NLT. Everywhere I go and everything I face, God will be right there with me and that gets me through each day.

...and now we are adding another chapter to her story with ROUND #3.

thanks for checking in.

tim and tammy
(and ashley)

appt went well...

tims first post-chemo appointment went very well. he got his neulasta shot...he got a bag of fluids to help him stay hydrated and help the kidneys (he never seems to drink enough post-chemo). his bloodwork is really good so far. liver enzymes are holding steady, electrolytes are decent, blood counts are not dropping too bad yet, although his platelets are heading south. they dropped from about a 140,000 to a 75,000. when they hit 10,000 he will need to start getting transfusions. (platelets are those little clotting guys that help you not to bleed)

it is kinda weird going into that setting again...it is a big room divided into two parts. each part has room for about 4 patients...some post-transplant patients, some chemo patients, some there to get transfusions, some there to get bone marrow biopsies. there are now two nurse practicioners, and two RN's and a secretary. the doctors are in and out but the NP's run the show. it was kinda like a class reunion when we got there...tim is a real celebrity or just one heck of a nice guy.

most of the patients look cold and exhausted. most of the caregivers just look exhausted.

it gets harder and harder for me to strike up a conversation with these people because many many of them are just attempting to get into remission so that they can hopefully be a transplant candidate. tim looks so good that they want to know all about him...scary huh. i want to get a shirt that says "please don't ask".

you can almost see the life drain out of them as we answer all the questions they have for us...as they learn of the two relapses and the staph infections and the esophagus problems and the bells palsy and the hundred other things he has been through, and soon they go back to reading their newspaper. he attempts to tell them that it was absolutely worth getting the transplant but everyone is tired...everyone is hoping for a quick guaranteed fix. tim looks at things like we got over another hurdle and they look at it as i am not sure i can do all that. we go back to reading our newspapers too and say a prayer for the guy in the next bed.

it is a strange world in which we have moved into...mostly a sad world. pray that tim can stay upbeat amidst all the sadness. it seems as though the patients get younger and younger all the time. we ask how so and so are doing and some are still in remission and some have passed on to a better place. but...like tims boss says: you gotta keep the faith. we have learned to take one day at a time and don't sweat the small stuff.

well, enough rambling for one early morning.

thanks for checking in. say a prayer for a cancer patient today.

tim and tammy

chemo still working...

...today we go back to the hospital to get his neulasta (?) injection. this is used after the chemo to help re-build what the chemo has destroyed. this injection will help prevent infections by helping the body produce new white blood cells. he has had these injections before and it seems like there are a few days between the date of the injection until we see any significant changes. during this time he is usually entering into that "danger-zone" of being neutropenic which means his counts are so low he can't fight off anything.

this is the time that we must be careful with what he is exposed to...no coughing or sneezing around him. no sloppy kisses (ed). good handwashing. lots of purell and germ-x. don't share towels. don't share drinks. no fresh fruits. no fresh vegetables (not usually a problem). and so on and so on...

we will get his counts today. this is a different chemo than we are used to...so we have no way to know exactly what or when his counts will drop or recover. i will let you all know how the appt went today. keep praying. this was the time that he got that wicked 21 day STAPH infection last time. keep praying.

thanks for checking in.

tim and tammy

sunday night update...

it is almost 11pm on sunday night and we have both decided that this has been the "best" post-chemo day he has ever had. we both know that more side effects of the chemo are still coming in the next few days, but so far he is tolerating this chemo very well.

i just finished sorting his medications and flushing his central line with saline and heparin and injecting his lovenox into his stomach...some days i think i should have gone into nursing. his appetite is starting to DIVE...he was hungry for gnocci's so i made them but he said they didn't taste right. he was hungry for a chocolate milkshake so i made him one but he said it didn't taste right. he was hungry for animal cookies so i got him some but he said they didn't taste right. his stomach is a little iffy tonight plus his taste buds are in some sort of funk.

his sister and crew were down to see him today and the in-laws surprised him with a visit too.

his mind is a tad sluggish but still on track. he is very tired but still able to keep going as long as he gets up and walks around every so often. he wants to keep going. he makes himself get up and read his bible and get a shower and get going. as long as he is able he will try to keep moving.

we are back to the hospital for a day trip on tuesday. this will be the day we find out what is really happening on the inside...his blood counts, platelet counts, potassium, magnesium, liver enzymes, etc... we could be there 2 hours or 8 hours depending on what he needs. they call it transfusion support. they find out what he lacks and then they transfuse it back into him.

all in all things are going better than expected. thanks for all your prayers, love and support.

we will update with any changes.

thanks for checking in. have a great day.

tim and tammy

home again...

chemo is over

sleeeping in his own bed

exhausted but ok

keep praying

thanks for checking in

tim and tammy

day 2 of chemo...

...so far so good.

getting more and more tired but the stomach is still holding. he has had some waves of nausea but nothing that he can't handle. we hope to bring him home sometime saturday night or early sunday morning.

he is on a bit more pain medication than he would like...his central line has been giving him some grief. there was so much scar tissue from the last line that they had to go quite a bit higher on his neck and it is a really tender area. they said it should calm down in a couple of weeks. yuk.

after he gets home the fun begins...we will have daily trips to the outpatient unit for transfusion support. the chemo will mess with his blood cells and platelets. he will more than likely need to get blood and platelets transfused. they will also daily monitor his blood work for other issues. they will watch his potassium and his magnesium and his liver enzymes. they will keep a close eye out for infections because his immune system will be weakened. in about 14 days he will lose his hair. and just about the time he starts to feel a little more human they will tell him he has to go in and do it all over again.

please keep praying. the first time we didn't know what was going on. the second time we were discouraged but thought maybe it was just a fluke. this third time is hard to describe. we are all just frustrated with the whole thing...we are tired. we don't want to play this game anymore.

keep praying.

thanks for checking in.

(tim and) tammy

finally...

yes, it is official. tims first dose of chemotherapy was given at 1:30pm thursday afternoon.

we were pleasantly surprised how uneventful the first day was...stomach tolerated the first dose very well but he did get the energy "sucked" out of him. very strange how that stuff works...very scary how that stuff works.

we are on the road to a three day regiment...three different major chemo drugs and a few minor drugs given over the three days. some are given on all three days, some only on one day and some last for a full 24 hour infusion. sometimes i wonder how they keep it all straight.

on a side note...you ever see that comcast commercial where the guy is trying to get someone to talk to him about his tiger tattoos??? well, that is me tonight (no i didn't go out and get a tattoo)...i am talking to everyone tonight on (our) NEW HP DESKTOP COMPUTER...can you tell???

a few weeks back we got a HUGE surprise from the guys and gals at PEPSI. a brand new desktop computer, monitor and printer to replace our dinosaur. there are too many to name them all but they check in daily and they know who they are...thank you thank you thank you...tim and i thank you but the girls really really thank you!!! they are already making powerpoint presentations and typing up research papers for school. it is awesome...thanks also to matt for coming over and setting it up for us.

we have been blessed by so many and in so many different ways. somedays it is just mind-boggling.

well...i could go on and on but this old lady is dragging...gotta catch some sleep.

thanks for checking in.

thanks for caring.

(tim and) tammy

afraid to say...

...everytime i tell you something it turns out different.

chemo was post-poned AGAIN until thursday morning (maybe).

they are wanting tim to eat solid food and make sure all is well with his esophagus...so far so good.

i will be updating when i can.

thanks for checking in.

(tim and) tammy

finally got the OK...

...we are just a few hours away from starting the chemo. the last doc finally was in and said that it was ok to proceed. i wish we would have been keeping track of exactly all the docs that gave their 2 cents. (we will probably be able to get a better idea once the hospital bills start rolling in...).

at about 5pm last night tim was upgraded from a CLEAR liquid diet to a FULL liquid diet. instead of clear soup broth he gets cream soup and instead of jello he gets pudding and instead of juice he gets milk. (he was not overly impressed, but he did attack the pudding cup....)

they are supposed to move him up to SOFT foods sometime today. he is still dreaming of his first cheese pizzza. (still a little doubtful if that falls under SOFT foods but we are getting closer).

this is when the rubber meets the road...even though we have gone through many many many chemo's...it is still very stressful for tim. the fear of the unknown...new chemo means new side effects to deal with...keep us in your prayers.

the PET scan showed that in addition to the original mass in the left arm tim also has a few spots in his left chest area and a couple spots on the left side of his neck. the doc seemed ok with these locations...no major organs and no liver involvement...

well...gotta go catch a few winks...6am comes quick.

thanks for checking in.

(tim and) tammy

nothing too exciting...

tuesday at 1pm tim is getting his central line put in

we are still not sure about the chemo yet...hopefully in the morning they will decide.

we have "people"

the oncology people ae consulting with the gastro-enterology people who are consulting with the radiology people who are consulting with the oncology people and it just keeps going round and round.

tim still is on bread and water without the bread...CLEAR liquids only. still not a happy man.

will update when i get a chance.

thanks for checking in.

(tim and) tammy

monday morning update...

for those of you who haven't checked in in the last 48 hours or so...you are in for some catching up.

brief run-down of events:

tim was admitted to the hershey med center friday night through the ER with a possible perforation of his esophagus.

lots of tests and x-rays and scans later...he is still in the hospital and we are still not exactly sure what is going on with the esophagus but there haven't been quite as many surgeons hovering over his bed-side anymore.

it appears since he was to get the chemo on tuesday anyway that we are going to stay in and follow that plan...although that is subject to change depending on what the "big dogs" say monday morning.

it has been a very long and very discouraging weekend to say the least, but from what i have heard it could have really been a lot worse.

this morning we should be informed on the actual plan for this week and i will update when i get a chance...our best guess is insertion of a central line and start the chemo within the next couple of days.

thanks for checking in...

(tim and) tammy

no surgery...

...but so far we still on the "wait and see" list. poor guy still can't eat or drink anything!!!

they did a barium swallow test and that came back negative...so however the air got into the esophagus it apparently can't get out the same way. there is no sign of a leak or tear that they can find. (this is good). the surgeon docs are happier but not yet willing to get him off the watch list.

the hemoc (cancer) docs figure that since we already have a bed (these are hard to come by) we might as well stay in and get the chemo. the only problem is that they can't get a central line inserted until monday at the earliest so we wait...

hopefully sunday we will get a final answer from the surgeons and a final answer from the hemoc's and we can get this process of fixing him started. needless to say this has not exactly been the weekend we were hoping for...you know that "last wishes" weekend before the dreaded chemo...

hope that was not too confusing...i am way too tired to re-read this tonight.

i will update when we know more.

thanks for checking in...

(tim and) tammy

like we don't have enough...

...going on.

it is around 2am and i am just getting home from the hershey emergency room. it is a long story so everyone is going to get the express version tonight...i am beat.

PET scan at 1pm friday
CENTRAL LINE to be inserted 1pm on tuesday
CHEMO to start 5pm on tuesday
TAM is to work the weekend

then we get this bizarre phone call around 6pm friday night telling us we need to get a chest x-ray because they found "air in tims esophagus". so...off the the ER for an x-ray.

next thing we know...

ER docs
HEMOC docs
CT surgical docs
inserting IV's
drawing BLOOD CULTURES
looking for a ROOM

i got home just before 2am and tim was still waiting to see if he was going to have a room...

apparently there is a chance that tim has a perforation in his esophagus...this is all new to us so i am not even going to speculate what the outcome of this could be...but it falls in a spectrum somewhere between antibiotic and wait and see all the way to surgery this weekend. tim sent me home to pack him a bag and catch a few winks and organize the kids plans...

i will update when i get a chance...wish i could tell you more but we are in the "wait" mode.

keep on praying...

thanks for checking in.

(tim and) tammy

its 3am and all through the house...

...the nights are getting longer and longer. tim seems to be sleeping ok...i can't seem to shut down my piddly little brain at night. the "need to be organized" part of my brain keeps making lists of "things to do" and the "you are exhausted" part of my brain says to "chill".

so...i thought i would send a quick update out while they were fighting it out.

good news on the tams work side...once again they are being VERY flexible with my schedule. i am working my normal schedule the rest of this week and the weekend and they have given me off on monday. after that i can pretty much let them know when i want to work and they will fit me into the schedule. (from experience...tim and i talk about this not affecting my schedule too much but in reality..he really seems to really need me during this time of chemo, radiation, and transfusion support...so this FLEX schedule is a HUGE blessing).

meg having her drivers license is going to be a HUGE help this time around...this will be the first time that we have gone through the rounds of chemo having an extra driver. it will be VERY helpful (especially on the days when i forget to feed the kids). she works almost everyday but also has a flex schedule if needed.

the twins have school stuff and sports stuff which i will be generating a phone list of transportation options within the next couple of days...i prefer to use parents of kids already on location but i will certainly have a back-up of others if you all don't mind.

as you can see...the mind just goes and goes...i just hope that someday it doesn't go and not come back!!!

well...enough for now.

we will update again soon.

thanks for checking in.

(tim and) tammy

its official...

the biopsies came back showing "relapsed B-cell lymphoma"

we kinda expected this but when the doctor comes in and sits down and says it...it is like getting punched in the stomach. we are not sure of all the specifics but here is what we do know:

the cancer is back- right now we are only sure that it is in the lump in his left arm.

the liver enzymes took a jump- so we are having a PET scan on friday to determine if the cancer is anywhere else in his body (but looking particularly in the liver).

the minimum treatment is going to be 2 rounds of chemotherapy in combination with radiation of the arm. (possibility of 3 or 4 rounds depending on what the scan shows)

the chemo being used is different than we have had in the past...they give nicknames to all the chemo regiments...the first one he had was hyperCVAD. the second time around he had ESHAP and this time we are using one called ICE.

the process is most likely going to start early next week...but could be sooner depending on the scan this friday.

the chemo will require that he gets a central line of some sort put in...we have requested that they do that before his admission if possible. (from experience we know this is better than trying to get it all done on admission).

so...that is about it.

it is kinda weird...the kids are doing this and that and i am whining that i have to go to work in the morning and tim is reading the newspaper...business as usual at the dewalt house. sad that this has become second nature to this family. it will probably sink in a bit closer to the actual admission day...

enough for once night...keep praying.

thanks for checking in.

tim and tammy

well...

...i know it has been about a week since i have updated, but there really has been nothing to tell. tim had his biopsy of the tumor in his arm on thursday morning and afterwards he felt good enough to go on a road trip to maryland to visit friends. since the biopsy his arm has been pretty tender but manageable.

monday is the big day...hopefully...the kids are convinced that we will NOT know anything until later in the week. i hope they are wrong, but the way things have been going i don't blame them for being a bit pessimistic. we are scheduled for a noon oncology appt. (that is interpreted to about 2:30 or 3 if we are lucky). the kids have been full of questions this time...and each time the questions get harder and harder to answer. they are learning more about this process than any 14 year old should have to deal with. one wants to know immediately when we hear anything the other one wants to wait until she gets home from soccer practice.

pray for wisdom for all parties this week. if the cancer is back we have timing issues to deal with regarding the possibility of more chemo and/or radiation and a million other things to deal with. if the cancer is not back it is another visit to the "wishy-washy" surgeon. (sorry...but that was a very frustrating segment of this whole process).

i will shoot out an update one way or the other later on monday night...

keep us in your prayers.

thanks for checking in.

tim and tammy

ps...hey katie (senior) you just keep loving and keep praying. thats what we need right now. we love you too.

minor update...

the biopsy is finally scheduled for this thursday, jan 10th and the follow-up with the oncologist is the following monday, jan 14th.

for those of you still wondering about how he made out with the steroids and the esophagus...the steroids did seem to help a bit in the beginning, but he still is needing to take the morphine so that he can eat without so much pain and discomfort. (he is still on 100mg of prednisone every other day and that is making him feel kinda weird also...too many side effects of that stuff to mention).

but even though he isn't always feeling the best he still keeps on going...going to work and going to church...taking the kids to the farm show...watching the gazillion football games on tv...keeping up with the debates...and occasionally still makes cookies.

it is doubtful that we will know any new information about the arm tumor until next monday but i will update if we have any changes or more news.

thanks for checking in.

have a great day.

tim and tammy

i know...

...everyone is patiently waiting to hear how the appt went with the surgeon!!! so are we!!!

it was another frustrating afternoon in the dewalt saga. you will be surprised to find out that the MRI showed a mass in tims arm...I THINK WE ALREADY KNOW THAT...the doctor would like to do a biopsy...THAT IS WHY WE WENT IN THE FIRST PLACE...the ultrasound department has no openings this week...NO SURPRISE THERE...so we wait...AGAIN!!!

we called the oncologist and he cancelled our monday appt. everything is on hold until they can fit us in to biopsy that arm. so we wait...

i am a pretty patient person my nature but even i am getting frustrated this time...not that we are in any great hurry to go down another chemo or radiation road...but the not knowing if it is cancer or not is driving everyone a bit crazy...and a tad bit edgy!!!

on a happier note...did you know that yesterday was PA LEARN TO SKI DAY!!! i took the twins to roundtop ski resort and for $10 they got a ski lift ticket and rentals and a lesson!! they loved it. (tim decided not to go since it was THE COLDEST day of the winter so far...he wouldn't have faired too well out there). it was great...i love that atmosphere...the brisk air and the snowmaking machines blowing snow in your face and the lodge with a fireplace and a starbucks...what more could you ask for!!! well i could ask to win the lottery so that they could go back again...this is not a cheap sport...i don't remember it being quite so expensive when i used to ski (many many moons ago)...but that was probably because MY parents were paying for it.

well...gotta get things moving here in the dewalt house...we will update as so as we know anything.

thanks for checking in.

tim and tammy

happy new year!!!!

it is 5am

meg is at a friends

the twins are at a church all-nighter

tim is all snug in bed

and i am making a fruit salad to take to work in an hour.

tim assured me that this 2k8 was going to be a good one...not that the last one was all that bad but we could use a little less excitement this year.

hope you all had a great holiday and a happy new year...

thanks for checking in

tim and tammy