today's appointment didn't go quite as smoothly as we would have hoped.  when we've come out for appointments in the past, we have always brought a hard copy of the mri with us. in our very own hands. this time, when i called to request a copy, sanford said they had already sent it to duke. so I just left it at that. unfortunately, when we got to cody's appointment this morning, they had not yet received any of the images.

I know you're all thinking "a wasted trip" because initially that's what we thought too. but in reality it really wasn't and let me tell you why. duke physicians will not read any scans unless you are physically present in their clinic. if you want their opinion, you have to go see them. so today we saw them. they did their neuro exam and chatted with cody about new symptoms and what we've heard from mayo and our local oncologist.  the only part missing from today was their opinion. by being there today, we did "earn an mri reading."  we have to go home and fedex the scan to them and she will read it on wednesday and call us herself.

so any way you look at it, we had to make the trip. the only downfall is that we didn't get any results today and will have to wait until wednesday. and trust me, i know how hard the waiting is.

you guys. what an emotional roller coaster. the last two days have just proven, once again, that we literally live day to day, sometimes hour to hour. 

when we had our appointment in sioux falls, we were told that cody's mri had shown changes. we were referred back to mayo clinic and duke. within two days, we had an appointment in rochester. the neurosurgeon that had done both of cody's previous surgeries had looked at the images and felt surgery could be a likely option. however, he was out of the office until after the first of the year, so talked with one of his partners who saw cody on wednesday. it is difficult to determine exactly what they are seeing, because radiation and tumor look the same on an mri. from the surgeons standpoint, he felt a biopsy would be an option, so we would know with 100% certainty what the images were showing. but, he also wanted us to visit with the neuro-oncologist and get her perspective. they were able to squeeze cody in for an appointment the following day.  we found a place for lunch and checked ourselves into a hotel. we were devastated. cody was not ready for another surgery. he was hoping surgery would be off the table. as many of you know, i posted on facebook asking for prayers. looking at the images and talking to the surgeon, we couldn't believe how much it looked as if the tumor had grown in two short months. what an ugly disease.

today, we met a neuro-oncologist who did a full neuro exam on cody and walked us through the mri images giving us her perspective. anytime you do radiation, there is swelling and irritation in the brain. when you do radiation again (no matter how long in between) the brain remembers that and the swelling and irritation tend to be worse. so there is still a significant amount of swelling in cody's brain (likely causing the headaches). but as she continued to look at the images with us, she felt confident telling us that she thought what we were seeing was radiation effects, and NOT new tumor growth. say what? are you kidding me? of course, we can't know with 100% accuracy, but she felt 95% certain that we were looking at swelling and "ugliness" of the radiation. and did not feel surgery would be the way to go at this point. she shared her findings/recommendations with the surgeon. gave us recommendations for further treatment options. and we were out the door. with huge smiles on our faces.

what a difference less than 24 hours made. thank you for all of your thoughts and prayers.

we were also able to get an appointment into duke for monday. we are going to keep that appointment and get their opinion (praying it is the same opinion we heard today). we also need to discuss different treatment options with them, as the new medication mayo is recommending was something that would likely keep cody out of most trials at duke.

so, although this is still an ugly disease, it's not as ugly today as we thought it was yesterday. please pray for our sanity as we navigate through our day to days. and remember, don't forget to live for today as we are never promised tomorrow.

i'll cut straight to the chase. mri results today showed changes when compared to the last scan in october. although they are unclear of exactly what it could be, they of course are concerned with progression of tumor, which we know is likely the cause. our oncologist is sending the scans back to mayo and duke to see if they have any further insight as to what we are looking at.


possible options (based on oncologist in sioux falls):
-talk to surgeon and see if surgery is a reasonable option or can be done safely
-if not, what else can be done?
-possible clinical trial
-not jump to any conclusions, continue with chemo, and do another scan in 2 months


i know you have questions. i wish i had more information. the nurse will work on sending scans and making appointments tomorrow and we will wait to hear from her. i'm hoping questions we have can be answered as we move forward these next couple of weeks.


we feared this would be the case. i think we're past the days of going in and waiting for our good news. now, we just wait to hear what the changes are and where we go from here.

i'm changing things up a little bit. after my last couple posts (these posts have since been deleted) i received several negative comments through private messages.  i was confused and hurt and decided i wasn't up for blogging just to have people attack me for sharing my emotions. i have always said, i understand the fact that i am opening myself up for the world to see by having a public blog. the amount of viewers since cody's latest diagnosis has also surpassed anything we could have ever imagined.

for those of you who are coming to the blog strictly to find out information about cody and follow along with his health journey, i have re-opened his caringbridge page. you can find that by going to www.caringbridge.org/visit/codyfinke  i will post information regarding upcoming appointments, tests, results, etc.

but a friend from work convinced me i needed to continue the blog. for me. as a therapy for myself as well as having this time in our lives documented. so i've decided to let those comments go and not let a few people impact my decision whether or not to keep writing.

if you're here because you want in on the good, the bad, and the ugly of our family and our journey- then you're welcome to stay. if not, then i please ask that you visit caringbridge for updates.

so here's what's coming up tomorrow (the 14th):
cody has labs and an mri in the morning. we will then see the oncologist in the afternoon. i have high anxiety about this. cody has been having headaches, where they've increased his steroids again and put him on prescription pain pills. he's also been sleeping a lot. the tiredness we are hoping is due to the chemo, but we do have concerns with the headaches.

thank you for your continued thoughts and prayers. these last few weeks have been hard for me, as i enjoy blogging and have missed being here. i hope you can all understand this is a delicate time in our lives and sometimes i feel like the most delicate piece of crystal --where one small bump can cause the whole thing to shatter. please, handle with care.

a few randoms

chemo

cody finished his first week of chemo on november 1. he handled the week well. the following week was rougher for him. an overall feeling of malaise kept him pretty low key. he developed some upper-respiratory symptoms that kicked his butt for several days. but i'm happy to say he's feeling better

  
surprise

friday afternoon we snuck out to the east coast to surprise cody's sister and family. all of cody's family made the trip. it was a super quick trip, but worth every mile. 

neurology

cody had a neuro appointment this week wednesday. this dr. simply works towards controlling his seizures. he did have a 3 week stretch without any seizures, which was the longest he's gone. but typically, cody has 1-2 seizures a week. seizure medications are basically trial and error, as everyone is different. but his neurologist is not happy with 1-2 seizures a week and wants to try a different medication. cody has started tegretol and will build up to an average dose. once he's at that, he will start weaning off one of the other seizure meds. 

boys

obviously, i'm a girl. and i grew up with only a sister.  we were neat. we were clean. we were gentle. we didn't blow holes in our jeans. i honestly can't believe how many pairs of pants we go through with boys. the knees are always thin. and a new hole is always just one slide away. 

clutter
i simply can not keep up with the clutter in our house. it doesn't matter how hard i try, i can't seem to get on top of it. it's maddening.  

chauffeur
driving (or lack of) is definitely something i took for granted. with cody's seizures, driving is still out of the question for him. i'll be honest, it's tough being the only driver in our household. in the past, when we were together, cody would always drive. i took that opportunity to do other things. mostly play on my phone, research anything and everything, and catch up on some much needed sleep. but now, every single thing that involves a vehicle, i am responsible for. and it's a big responsibility.

 

halloween 2015

this summer, while hitting up a rummage sale, i came across a dorothy and tin man costume from the wizard of oz. both were sizes that i knew two of my kids would fit into, and i couldn't resist.  now these days, i understand that there might not be many young ones out there that are familiar with the wizard of oz. paxton is one of them. but the twins, if you remember, went through a phase where they wanted to watch the movie over.and.over.and.over.again.  i knew they would be all about these costumes. kaden got to choose between being the lion or scarecrow. he was proud to wear his lion costume, along with his badge of courage.

my sister-in-law and her family decided to come home for the halloween weekend. it was perfect, my nephew would be the scarecrow. and the cutest scarecrow he was! this gang was off to see the wizard.

my niece, as much as we tried to get her to be a part of the "theme" was determined she was not wearing a costume this halloween. last minute, she decided to be a fairy :)

this little man rocked trick-or-treating. it was so much fun to be able to share this experience with him

we had quite the following. in years past, it has taken us f.o.r.e.v.e.r. to get costumes on and get out the door. this year, with it being on a saturday, we seemed to have plenty of time. we started off with an early dinner and were quickly out the door. i admit, it might have been just a leeeetle bit early. but with young kids, i was ok with it. the kids were finished and still weren't too far off of their schedules. and as you know, we like our schedules.

we have a busy/fun weekend planned, but i will be back with more of what we've been up to :)

cody has finally started this next cycle of chemo!

temodar- is given in a 28 day treatment cycle. remember, it is an oral pill, so he will take his dose every evening for 5 days. he started last night, so his treatment schedule will be wednesday-thursday-friday-saturday-sunday. then he will have 23 days off and start the cycle again.

he is to take the temodar on an empty stomach, at bedtime, and he is on two different anti-nausea medications to help with symptoms.

just like anyone else going through chemotherapy, temodar can lower blood cells that help your body fight infections and help blood to clot. this may cause it easier for cody to bleed from any type of injury or easily get sick from being around others who are ill.

blood counts will be monitored through routine lab work.

when we traveled to duke, we weren't really sure what we were hoping for. in our minds: if they could do nothing for him, that was a good thing...because then things weren't getting worse. if they did have something to offer, then it would have meant things were worse.  so although we had to travel 2500 miles, we were kind of hoping for no news.

an advantage that they have, because so highly specialized, is that they can pop in the mri and read it right in front of us. they don't have to wait for radiology or a report. we knew it was going to look rough due to radiation, and we were right. they say it could take a few months before they can really tell the difference between radiation effects/swelling and tumor. but they were confident they were not seeing new tumor growth.

i think we were all a little confused, what is duke actually doing for us?  after this last visit we think of it like this....cody is fortunate enough to be seeing some of the "best of the best" in brain tumor/brain cancer treatment. we think of them as the leaders in cody's treatment plan. they make the plan, and our local doctors will carry it out. they will see cody in their clinic every 2-4 months. unfortunately, the clinic is half way across the country. but cody made the comment "the only reason i'm coming out here (duke) is for when i'm laying in bed, sicker than hell, i won't have to question 'what if?' because that's a sucky question."  and that's exactly why we've chosen the preston robert tisch brain tumor center and will continue to travel as long as we need to.

some highlights of his appointment:
--long term use of steroids is not good. cody has been on steroids to help decrease swelling in the brain from radiation and to help control seizures. but he has been on too high of a dose for too long. they have given us a schedule to get him weaned off, very slowly.

--they tossed around the idea of using avastin to help with the swelling but decided against it. in the future, should cody be eligible for another trial, they typically look for people who have never had avastin in the past. so they are holding out and don't want to use up that option.

--get him started on his next round of chemo. each cycle is 28 days. he will take chemo for 5 days and then rest for 23 days. he is to have an mri every two cycles. his first mri should be scheduled in december. duke would typically like to see cody at this time, but also know we are traveling from minnesota. that first mri will be read at home. if everything looks ok we would not need to go back until the 2nd mri in mid february.

--the last thing addressed was cody's cognition. there is no question, when someone has something going on in their brain, there are going to be deficits somewhere. he has no motor deficits. he has no speech deficits. but we are noticing some slowing cognition, his frontal lobe functioning is not where it used to be. this might come back with time, it might not. we are to have him work on things that would be considered "cognitive exercises" every day. things such as word finds, crossword puzzles, sudoku, solitaire, etc.  his memory, concentration, and number skills are where we see it the most.  i have come to realize that i need to double check everything he is doing. i simply can't trust it or assume things have been handled the way they may have been in the past. this is difficult for me. for both of us. but these things are little. it's ok in the grand scheme of it all. again, we are so blessed for everything that has not been taken from him.

have i left you hanging?

i'm not trying to keep you in the dark, i swear. but you know that thing called, life, it's getting in the way of my blogging time.

when cody was released from the duke trial, they said to come back in two months. well that time has quickly approached and he has an appointment scheduled for the 15th. initially, we were somewhat hesitant to keep the appointment, because really nothing has changed since the last time they saw him.  i made a contact to update them on cody and to make sure the appointment was worth both our time, and theirs. they want cody to have an mri done before he goes and felt it was still important to keep the appointment. so that's what we're going to do.

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!

let's catch up

while we were on the east coast, we got to spend some precious time with my sister and brother-in-law and my amazing nephew! they were so gracious to allow us to crash their weekend on such short notice.

 

last weekend we were able to spend time camping with friends. i absolutely love getting away, having some time to relax in the fresh air, and have nothing to think about. it brings some normalcy back into our lives. the kids love it too.

 

 

in case you haven't heard, the people in our lives are top notch! the love and support from family, friends, co-workers, and people we don't even know is indescribable. we had a group of people set up a fundraising event by selling egg rolls by the dozen. to say this was a huge success would be a definite understatement! those who worked to pull this off (you know who you are :), we thank you again and again. there were over 4,500 egg rolls that were made to fill orders. WOW!

 

 

treatment for cody has finally started. he had his first radiation treatment wednesday afternoon and took his first dose of chemo just before bed wednesday night. his radiation oncologist has cody set up for 18 treatments.  they are scheduled every day monday through friday. chemo will be taken every day of the week through the entire radiation cycle. when radiation is finished, his chemo dose will increase and the schedule will change.

a special mask is used that fits snugly over his entire face and then screws to the table to keep his head perfectly still. the machine they use is the TomoTherapy system and this was not available the first time cody had radiation. the benefit of this machine is that he can have ct placement scan before every treatment and radiation can be delivered from 360 degrees around the head. this allows a greater ability to save normal/healthy brain tissue. the whole process only takes about 15 minutes, but the actual radiation is done in about 7 minutes.

we joke that chemo can just be delivered right to your door step :)  he was prescribed a couple anti-nausea drugs as well as an antibiotic to help prevent infections.

 

cody remains in good spirits. we are curious and anxious when we will start noticing side effects, but we are praying they are minimal. cody continues to have seizures, which are actually getting worse. the symptoms are remaining the same, but he is having them more frequently. he typically has a seizure every day to two days. we have a call in to the neurologist to see what we can do about it.



the new plan

it's taken me a few days to get over our news from duke. inside I've been having a little tantrum that I can't seem to get over. but I need to. for everyone's sake.

duke recommended looking into radiation, along with chemotherapy. they called cody's local oncologist and had appointments set up for him the very same day. thanks to cody's sister, we were able to manage a second flight change and we flew back home on Monday. as much as I would have loved to continue "pretending" we were on vacation, we needed to get back home to our kids and our life and figure out the next step.

on tuesday, cody met with the radiation oncologist. it's hard when there are such differing opinions in the medical field.  although mayo clinic did not think radiation would be a good option, the dr. at sanford thought it would be worth a shot. he said we can't have the exact same plan as he did 10 years ago, but felt comfortable providing 18-20 radiation treatments. of course there are risks. there are risks with absolutely everything we do in life. his risk of long term side effects increased from 1-2% (the first time) to 10-15% this time around. but he is also dealing with the diagnosis of glioblastoma, and at this point, we know the outcome if we do not attempt to treat this aggressively. don't get me wrong, this is a hard call. we also want cody to have the best quality of life possible.

so now, all we can do is take the information we've been given and make a decision that feels the best. ultimately, it is cody's decision. I respect that and support him 100%. he has already had a planning ct scan and his radiation mask made. they are currently working on his treatment plan (as working around the optic nerve will require precise planning). the goal was to start treatment on tuesday the 25th. but if tuesday rolls around and the treatment plan isn't perfect, they will delay it until it is. the pharmacy is also working with insurance on getting chemotherapy ordered. he will be taking chemo through an oral pill that he will take at home. if all goes as planned, cody will start chemo at the same time he starts radiation.

a couple of cody's extended family stopped by this afternoon with a gift for him. we thought it was very fitting and it happened to come at the perfect time :)

When I say we live hour by hour, that's seriously no joke. 

This morning we got a huge blow that knocked the wind right out of our sails. Another panel reviewed Codys case and due to the fluid collection that still remains on the side of his head they are considering him "not completely healed from surgery." He's already been kicked out of the trial. 

i can't even begin to explain the emotions we've had the last couple of hours. There are simply no words. But the tears just continue to stream down my face. 

Our plan now is to come back home and start chemo. Duke said to come back out here in 2 months, do another MRI and see if there's something they can offer at that time. 

Thank you to those who have made this trip possible.  Specifically, my aunt and uncle who donated airline miles to get us our flights, my parents and sister who have taken care of our children, and Jamie and Joey for taking us in when our plans first changed. 

Thank you all for your encouraging words, thoughts, and prayers. Although now the plan will look differently, we will continue the fight. 

First of all, I can't thank you all enough for the kind words, thoughts, and insight. I seriously took each word to heart and did a lot of thinking and praying. Of course, there is no way to put a price tag on someone's life and deep down in my heart I knew the right decision. Cody was eager and enthusiastic.  And yesterday I wanted so badly to stand behind him and be just as enthusiastic. But I'm also a mom. And as a mom, I have to think realistically. I wish this could all come together magically, but I want things to remain as "normal" as possible for those three kids, whose lives are turned upside down and inside out. Plus, we are half way across the country from here. Cody likes to do, and I like to plan. Having to surrender it all has been a big struggle for me. I can't begin to describe the support we have from family and friends, that I know are going to help pull this all together. And although I don't have the plan completely sketched up, I know I have to have the faith that it will come together. So thank you.  Huge hugs to all of you!

This morning we got a chance to visit with the research team again and Cody gave his signed consent to be a part of the trial.

Phase II Study of Pembrolizumab (MK-3475) with and without Bevacizumab for 

Recurrent Glioblastoma 

There are only three other locations in the United States that are offering this trial, however Duke has recruited the most, with 12 active people currently in the trial. They are allowed up to 15 people to participate. This is an amazing blessing that Cody is a candidate for this trial. 

The study drug, Pembrolizumab, has been FDA approved to treat a couple other types of cancers, and has been successful. They do not know yet if this is going to be a successful treatment for brain cancer, hence the trial. What they do know, is that their 12 active participants are doing well.

Cody did lab work and a urine analysis at the appointment this morning, in order to be submitted for randomization. We will not know which cohort he will be a part of until Tuesday. 

Cohort A:  study drug, pembrolizumab (MK-3474) + bevacizumab (Avastin)

Cohort B:  study drug, pembrolizumab (MK-3474) only

Knowing what cohort he will be in will determine how often we will need to travel here. If he is in B, then it would only be one time every three weeks. But if he is in A, it would be more frequently.  When we do come, it would only be for a day, unless there are problems. There are no restrictions on flying for Cody.

Both drugs are in liquid form that would be given through an infusion. MRI's would be done every six weeks. One of the biggest risks with these drugs is brain swelling. They described it to us like this---if you get a sliver in your finger, it might get red and inflamed because the body's own immune system has detected a foreign object. Well that's exactly what is going to start happening to codys brain when the body starts detecting the cancer cells. They have a huge job watching this closely and using other medications to help keep the brain swelling down. 

They also described the body and the cancer cells being knocked down. Think of your body like a balloon. The drugs are going to knock Cody's body down, but just like a balloon, it will bounce back and recover. They describe the cancer cells as a Lego tower. Once these drugs knock them down, they are down for good. Look out cancer cells, we're coming for ya!!

They have Cody's first treatment scheduled already for Wednesday. An MRI has to be completed within two weeks of starting the trial. This will be two weeks on the dot. Otherwise they have to fight with insurance to get them to cover another scan, and often if it's to determine eligibility for a clinical trial insurance doesn't cover it. We snuck right in!

Originally our plan was to fly home tomorrow. But rather than coming home and having to be back right away,  we are going to make the 4 hour trip to Arlington VA, and stay with Cody's sister for a few days and travel back to Duke on Tuesday.

We both are very excited to get something going! When I sit back and think about it, our decisions have been easy to make and God has guided our path. How else would two people from small town Midwest, make it out to be 1 of 13 people on a study at one of the worlds largest and most successful centers offering brain cancer treatment and research programs?

Well, we may have gotten some questions answered, but left with a whole new set of unanswered questions. All I have to say is, this sure is a lot to deal with!

We met with a lot of people this morning/afternoon as part of their brain tumor clinic. We arrived early, as to alleviate any anxiety. As we were waiting, (and waiting and waiting), we were informed that they were running over an hour behind. We didn't get in until close to 11:30. Codys patience had run out!!

We reviewed the MRI that was done last week. It did show areas of increased intensity, which indicates the cancer is continuing to grow. There is also more than one area (multi-focal) of cancer growth. We were not surprised by this, knowing it has been 7 weeks since surgery with no treatment. Now, we just have to move forward.

(*the trial involving the polio virus has been determined to NOT be an option. Because of the multi focal tumors-that are more than 1cm apart, as well as being too close to the thalamus. Both of these do not allow him to qualify for the trial).

He does, however, qualify for another clinical trial. We were given a lot of paperwork to review tonight and mark up with questions. This trial is using immunotherapy rather than chemotherapy. We were told that they are finding the newest/better way to treat cancer, is to get our own immune system to do it. Which to us, makes complete sense. When cancer cells grow, they put up a barrier around them that does not allow anything to attack it, and therefore just continues to grow. The drugs in this trial, would help to break down those walls or barriers in order for the immune system to kick in and start attacking.  There are two different cohorts to this trial, which is decided by randomization. The risks and side effects are certainly scary when reading it on paper. There is a lot to think about and discuss. But cody feels like he doesn't have an option, he has to be a part of this. He doesn't feel like he can pass this opportunity up. He told me today "I'd rather die fighting than die waiting to die." How's that for a punch in the stomach?

We meet with the team again tomorrow at 10:00 to have our questions answered and to sign consent if he wants to go through with it. I hate that I have reservations simply because of the logistics of it all. Being a part of this trial is going to be a huge financial responsibility, as it will require us to make a trip to Duke every 2-3 weeks. Codys work has been amazingly flexible and accommodating. But school starts for me on Monday, and I don't quite know how I'm going to make it work. Plus, we have 3 small children to think about. How are we supposed to make decisions like this? If you have any insight for us, I would LOVE to hear it before 10:00 tomorrow morning. Text, Facebook msg, blog message, anything....Seriously!

We made it to Duke. We flew out of Sioux falls at 6:15 yesterday morning, had a layover in Atlanta, and made it to Raleigh/Durham around 1:00. Cody didn't feel well during the afternoon and had 4 seizures before bedtime.

Today Cody has appts starting at 10:00 (eastern time). The paperwork says the appointments can last 3 or more hours, so don't be worried when you don't get an update right away ;)

We honestly have no idea what to expect today but hope to leave with more answers than questions.

go blue devils?

it's official. we're headed to north Carolina!

we heard this week that cody had been penciled in for an appointment, but they were still waiting on pre-authorization from our insurance. this morning we got the call saying everything was set and in place. his appointment is scheduled for next thursday the 13th.

we are very excited to finally have something on the calendar. cody tries to remain hopeful, but he said this would have been a pretty big blow if we couldn't have gotten in.

but we are in. so now we are working on getting some flights booked and getting ourselves organized this next week. for high grade tumors, duke requires an mri within two weeks of appointments, and cody was able to get that done today.  duke is requesting that we bring the mri images with us on a cd to the appointment, so we were sent home with that. now tell me you wouldn't insert that disc, put on your white office coat, call yourself dr. finke, and try to read those images. i have seen enough brain scans that i can tell the (very) basics, what looks somewhat normal vs. abnormal. but i clearly am not a radiologist and walked away with more questions than i was comfortable with. so we are definitely hoping to get a call from the doctor either friday or monday to hear the report before we get out to duke.

so let me guess...you have a lot of questions? SO DO WE!! we do know we can't wait to get out there and hear what they have to say, but we have a LOT of unanswered questions yet.

7-30-81

seven-thirty-eighty one. with cody's medical history, we joke that I can rattle off his birthdate faster than I can my own.

yesterday we were able to celebrate cody's 34th birthday. grandma came to watch the kids, so we hit up an early movie and then went for dinner. it was simple, but perfect.

we are so thankful for every moment that God gives us. every moment that cody is healthy and we can create memories that will last a lifetime. we have never been the people who ask "why us?" from the very beginning, we have never asked or questioned this. first, what good does it do? second, why NOT us? what makes us so special that we deserve no pain? why would we wish this on anyone else? because of our hardships, we try to be very purposeful in how we live our life and it's not our job to know "why." God is the only one who knows why, and although we may not understand it now, He has a plan. this is what helps us get through each day.

so, of course I wanted cody's birthday to be special. but, birthdays or not, I try to make every day special. every day has to count.

this past weekend we had a chance to talk to dr. friedman (from Duke) on the phone. he called us. himself.

this is what we know now:
-cody's post-op mri showed that mayo did an amazing job with the surgery. there is no remaining tumor, therefore the clinical trial involving the polio virus is off the table...for now.
-dr. friedman was open to a consultation to see if there are any other trials or options for cody at this point.
-we questioned getting started with chemo. dr. friedman stated that if cody chose to start chemo now then there would be no reason to come see him.
-we have decided to continue moving forward with an appointment through duke.

through our own research, prayerful thoughts, and conversations with each other, this is an opportunity we simply can't pass up. and we both feel really good about this decision.

the video below of dr. friedman helps explain why we feel so strongly about visiting their brain tumor center.

{i do apologize in advance for the parts of the video that may be of less importance}

 

Five years ago today, I had been a mommy for just over 24 hours. And this guy was a proud daddy.

But, he was scared to death. I was struggling in the operating room with significant hemorrhaging and Kenley was taken to the NICU after she stopped breathing.  He was our rock. He successfully juggled between taking care of Kaden and myself and getting to the NICU to help with Kenley as much as possible.

 

You see, that's the thing. Cody has always been the rock of our family and has always taken care of all of us.  I can do hard things, but I can't do it without him. I can't stand strong without him. He is how I get through each day. HE helps me be brave.

 

Spending time together as a family and creating memories is THE most important thing I have right now. And yesterday, July 22nd, we did just that. We took the afternoon to celebrate the twins' birthday by going to Okoboji. It was a day we couldn't have created any more perfectly. My heart was happy.



 

 

                                                                        ******

Cody went back to work for a few hours three days this week. He's been worn out every day, and the heat isn't helping. Since starting the melatonin, he has been sleeping (a little) better.

 

Sanford has been helping us remain in the loop with Duke. They received Cody's pre-op and post-op MRI's this week, but are requesting more records. Cody and I spent most of the morning trying to get the right information from Mayo released to the Brain Tumor Center at Duke.



It's late Monday night and by the number of "pageviews" on the blog, I can certainly feel the love. We had a lighthearted weekend. Saturday was Brewster Fun Days (i'm hoping to get a separate post up about that) and Sunday we celebrated the twins' birthday (a few days early). When it comes to birthdays, ok who am I kidding, when it comes to ANYTHING I like to be organized. I do a lot of planning for birthday parties and there is always a theme. Honestly, I think I do it more for me than the kids. But this year, the kids had to celebrate their 5th birthday party with a thrown together party. And you know what? It turned out just fine!! The kids had fun and I survived :) We were just thankful that we got to celebrate with our closest friends and family.

In "Cody news" we're working on getting his insomnia under control.  The dr. feels that it is likely due to his seizure medication, so we're just going to start out by trying Melatonin. If that doesn't work, they might be able to consider reducing that dose. However, the results of his EEG came back and it did show seizure activity in the right frontal lobe, so they're not sure that's the route they want to take either. We are getting very anxious about hearing back from Duke or starting chemo. Simply because we want Cody to be doing SOMETHING. He needs to get started on some sort of treatment. We hate to sit and think about what's going on in that brain...it plays on our emotions and heightens our anxiety.

I'm excited to announce that we have started getting our "old Cody" back! 
Here's the update at 3 1/2 weeks out from surgery...

head pain: the new prescription for pain meds was not compatible with the seizure medication Cody is on, so he only took it for a day or two before they had him stop. thankfully his pain is much decreased and he's only taking Tylenol 2-3x/day.
back pain: results from the MRI of his lower back came back showing moderate disc herniation in multiple areas. again, thankfully the pain has almost totally disappeared.
seizures: last Saturday, Cody had two seizures. Other than that, they remain under control.
energy: definitely showing an improvement. He still doesn't do much, but at least he's out of bed more.
appetite: back to normal
sleep: still an area of frustration. his sleeping literally shifted overnight. instead of sleeping all of the time, now he finds himself with insomnia and is struggling to sleep, even at night.
activity level: improved. he does a lot of sitting and watching tv yet, but he has thrown a couple loads of laundry in and washed a sink full of dishes!
incision site:  looks amazing. he had his staples removed this week and you can't tell his new scar from his old scar.
attitude:  unfortunately, still crabby. but mostly with the kids, which is breaking my heart. although he's showing overall improvements, I still think he's recovering and "recovery" and "3 small children" do not go well together.

Cody went into work for a couple of hours on Thursday to get some paperwork done. He couldn't believe how difficult it was. He really struggled with concentration. His tentative plan is to start back on Monday...and just see how things go and see what he can handle. He promised me he will take it a day at a time (and if need be, even an hour at a time).

There have been a few instances where Cody has made a comment or done something, that appears as straight up confusion. I should probably take note of these times, but the most recent was when he went to thaw hamburger in the microwave. He went to push the buttons, and couldn't at all remember how to do it. I'm not sure if this is something that will be short term, or if these are just side effects of what's taken place in his brain.

We have been in contact with Duke University Medical Center a few times this past week. We aren't exactly sure what they will have to offer Cody as far as clinical trials. You may have heard about it, but one of the most promising trials they are doing right now involves the polio virus.  Mayo clinic has sent Cody's pre- and post-op MRI images to Duke. We are now in the process of waiting for those to be reviewed and an appointment to be made.

how big is your brave?

This video has always hit me hard. We are so grateful every morning and every night for the day God has given us. But big or little, cancer still sucks!  Cody is brave. He is one of the bravest people I've ever met. But me? I'm not brave. I've got a long way to go.