be kind

remember how i told you my brain is often in a fog? i happened to catch myself zoning out and i missed something that i was responsible for noticing. tonight someone made a comment to me that i felt was not very kind. he was right. i should have been paying attention. but it was an honest mistake. i think so often we get frustrated and angry at others, whom we have never met or know nothing about. i try my best to always remember (and i encourage you to do the same):

because kindness DOES matter.

maybe a little bittersweet

i'm not going to lie. yesterday was hard, knowing it was cody's last day of radiation. of course we feel blessed that he was able to receive 18 treatments and that he handled them so well. but we now know he is done. done for good. he will never be able to have another dose of radiation.  that's hard to swallow. cody's radiation oncologist told us that he pushed it as far as he possibly could. unfortunately, any negative side effects that could be caused by the radiation aren't seen now, but possibly months down the road. if his current state (the fact that he's doing so great) were a predictor of the future, the dr. would continue to push. but because we don't know what might happen or when we'll see side effects, he just can't safely continue. and we totally understand that.  that was a huge concern for us in the beginning. so now we will wait and see.

when radiation ended, so did his first round of chemo. last friday we met with his oncologist. his blood work looked good, indicating he also tolerated this round of chemo well--which was to be expected because of the low dose he was on. the plan now is to give him a month off for his body to rest. we go back on october 19.  at that time, they will start a new schedule of chemo...5 days on, 28 days off. he will continue this for as many cycles as necessary. the dose of chemo will also increase significantly.

he isn't scheduled for an mri until november.  at this point, if they were to image his brain, the dr. said "it would not look good." the radiation has made it angry and would not show a good picture of what's going on in there. that is why they want to wait to give the brain some time to rest.

cody and i have both noticed deficits and he says "i know my brain isn't quite right". although small, it's enough to catch our attention. not being able to recall his telephone number. retelling a story he shared a only hours earlier, and not remembering even when called to his attention. not being able to activate a new debit card because he can't get the right numbers punched in on his phone. those kinds of things. he might be able to hide from others, but its glaring us in the face. we don't know if this is radiation induced or the cancer itself.

just be held

i needed this today.




**update**
last week thursday, i posted on facebook that cody had gone 2 weeks seizure free. he was also starting to wean off of the steroids. but on friday, things had already changed. cody had 2 seizures friday, 3 on sunday, and 1 on monday. a call went back into neurology. they increased the dose of one of his seizure meds as well as an increase in steroids again. they talked to oncology to think about a sooner rather than later mri. we already have an appointment this friday with his oncologist, so he felt it would be fine to wait and talk about an mri at the appointment.

i again, want to clarify what it means when i say that cody is having "seizures." in the past, i have blogged about cody having complex partial seizures. typically you can not even tell that he is having one. he describes it as feeling very "weird" or "out of it" for a few minutes.  he is typically a little confused, has some tingling in his left arm/leg, and has a very strong metallic taste in his mouth. when it's over, he claims he just doesn't feel very good and is often tired.

also, if you haven't been on the blog yet to get a thank-you from cody and i for the benefit, you can find that here.

our most sincere ''thank you''

yesterday, an incredible thing happened. there was a group of people caring enough to organize a benefit for our family.

 

the appreciation for the amount of work that went on behind the scenes could NEVER be fully expressed. this kind of thing doesn't just pull itself together on it's own. there were hours of work done by individuals who truly care about our family and our situation.

 

cody and i were absolutely blown away by the kindness and generosity of our home and surrounding communities in regards to 1)the donations we received, 2)the volunteers helping hands 3)and those that came from near and far to make this event a huge success. this was so emotionally overwhelming for both of us.

 

i wish there was a way to show how grateful our family is. i wish there was a way to express the comfort we feel by your outpouring of love and support. i wish there was a way i could personally thank each and every one of you.

 

you have truly touched our hearts with your love, friendship, and generous support during this difficult time.

 

with love and our most heartfelt THANKS,

cody&holli

kaden,kenley&paxton

 

 

 

the local newspaper did an article to advertise the benefit and tell a bit of our story. you can read that here

 

 

finke five:

we promised the kids that we would take them to the black hills this summer. but brain cancer had other plans and our summer wasn't all that enjoyable. a couple weeks ago, kaden asked us "when can we go to the black hills?" so we decided in an instant that we would go the following weekend, over labor day. initially i was quite hesitant. i mean, we've been driving so much lately, the last thing i wanted to do was get in the car and drive. again. but cody felt strongly about this. he said he needed to do it for himself. who knows if he will ever feel this good again, and this would be the perfect time. i was convinced. when i was growing up, my family went out to the hills every single summer. we made memories that i will never forget. i was excited to give my kids that same opportunity.

 

pacman:

i'm still having a rough time with this, but paxton started preschool on tuesday. he was so excited saying "this is gonna be so much fun!" he had a good first day.

 

kaden & kenley:

these two started their second year of preschool on wednesday. they were old pros.

me:

i can't get over how blessed we are every morning i wake up. we are so thankful for every good day we have. i'm not sure i fully understand my emotions though. there are days where i can't make the tears stop. other days, i feel numb and couldn't make myself cry if i wanted to. it frustrates me. not the fact that i think i should be crying more or less, but because i have absolutely no control over it. if you haven't noticed yet, i like control.

 

cody:

honestly, couldn't be doing better. he is tolerating his treatments well. i'm finding that there may be some confusion with this, so hopefully i can clear some of that up. cody gets radiation every (week-day) of the week. we drive to sioux falls monday-friday, every afternoon. we met with the radiation doctor yesterday. he said as far as side effects, cody probably won't be able to tell they've done anything to him when his treatments are complete. because he is only getting 18 treatments, the side effects will be less significant. the first time cody had radiation, his only side effects included fatigue and hair loss in the spots where the radiation hit his head. maybe this time he won't have any of that. the dr. gives him only about a 5% chance that the radiation could cause vision damage.

 

the chemotherapy cody is taking is called temodar. and just because cody takes this in an oral pill form and hair loss is not typically a side effect, doesn't make it any less of a chemo drug. we've had people say to us "but that's not real chemo, right?"  i guess i'm not sure what "real" chemo is vs. "fake" chemo, but yes temodar is a REAL chemo drug. we don't know if people think that "real" chemo has to be done through an infusion, cause hair loss, or make people violently ill...but we consider cody a lucky one. he does take pretty strong anti-nausea drugs before taking the chemo and takes it right before bed making any nausea less intense. blood work is also checked weekly to monitor complete blood counts as well as the function of other organs, such as his kidneys and liver.

 

please don't hesitate to ask questions if you are unclear about something. chances are, if you are questioning it, so is someone else. i would be more than happy to clarify anything for anyone :)

 

cody's seizures have also decreased. since adding another seizure medication and steroids, he has not had another one. we are currently working on weaning him off of the steroid, so let's pray that we don't see an increase in seizure activity once this happens.

on a lighter note...

i don't really know how it's possible that all three of our kids will be going to preschool this year. our weeks will be busy. last night we had open house at sunny days preschool. although the twins turned 5 in july, we decided to keep them out of kindergarten for one more year. kaden and kenley attend preschool m/w/f mornings and paxton will be t/th mornings. school starts after labor day and they are all so excited. i'm excited that they'll have so many of the same experiences to share with each other.

 

 

on a heavier note...

our kids rely on us to bring routine and consistency into their lives. and although the hand we've been dealt is a crappy one, it has been so important to both cody and i to try to keep their lives as "normal" as possible. as adults, we know things are different in our life right now. but i'm afraid i'm not considering their feelings and emotions like i should be. this hit me hard the other day. when i think of how sick cody's body is on the inside, he doesn't look that sick on the outside. i sometimes forget. but while in the car one evening kaden asked me "mom. when is dad gonna feel better?" i almost lost my breath. i never even thought that they still consider him as not feeling well. when i look at him and in my mind i feel like he's doing so well. and although to us, these may seem like simple things, but those three kids know that their daddy doesn't get down on the floor and wrestle with them anymore. they know daddy can't pick them up and throw them in the air like he used to. they notice daddy doesn't drive anymore. i didn't know what to tell him. i tried to be gentle, but honest. daddy is doing as well as he can be right now. we don't know when daddy will feel better. we don't know if he ever will feel better. i hate that we don't know what the future will look like. and i hate that i don't know what to tell my kids.

 

i can sense their anxiety the more we are away from them and the more they are dropped off with someone, even if just at grandparent's houses. kaden is constantly calling out my name, just to make sure he knows where i'm at every.second.of.every.single.day. and waking up in the middle of the night is sure to cause anxiety because our 2am's have turned into this:

 

quick update:
-monday morning, cody had a head ct scan. this was ordered by the neurologist last week friday when we called with concerns of cody's increasing seizures
-monday afternoon, cody had blood work, a quick visit with the oncologist, and then radiation.
-because of the seizures, two new medications were added.

current medication list:
dilantin- to help control seizures
decadron- steroid (radiation induced brain swelling)
compazine- anti-nausea medication (radiation and chemo induced nausea)
kytril- anti-nausea medication (radiation and chemo induced nausea)
bactrim- to help prevent infection while on chemo
keppra- used for treating seizures
temodar- chemotherapy
melatonin- sleep aid
tylenol- as needed or pm to help with sleep
colace- stool softener (well, because, all of the above medications can cause serious issues)

many raw emotions running through our household lately. think of an emotion...we've had it. and it often can change minute to minute. it is very important to me to support cody and his feelings through all of this. while we are all affected by this in different ways, he is the only one who has cancer. yes, i do believe that cancer affects an entire family. but cody is the one who has this nasty disease spreading through his brain. and his feelings may be very different than our own. it's a hard balance to take care of yourself but also respect him. there are days that are more difficult than others. there are times within that day that are more difficult than others. and as much as i'm trying to keep it all together, i have to remember, this isn't about me.

all summer we've lived in the "medical world."  cody's health has been our priority and we've been able to eat, sleep, and breathe all of the doctors, appointments, phone calls, medications, and traveling. but now that i'm back to work, i've had to divide my brain into thinking about his medical needs and what i need to accomplish and focus on during my day. it's exhausting. and i often find my brain in a fog. the kids start preschool next week. we'll see how my brain functions then, haha!