easter

spend a saturday with me

winding down the evening

i'm kind of enjoying messing around and creating these videos. let me know what ya think. maybe i need to just stick to writing :)

let's see, what's new?

chemo: recommendations from duke were finally put into place and cody started his new treatment plan yesterday. they put him back on the 5/23 cycle of temodar. we ran out of his primary anti-nausea pills and forgot to refill them, so he tried his "back up" pills last night instead. yeah, that didn't work out so well. so we will be heading to sioux falls this afternoon and refilling that prescription.

neurology: cody had an appointment this past monday. we finally feel like we've got his medication on track and have gotten his seizures under control. he has only had two since his last appointment in november. however, and this is a big however, his mood and irritability is out of control. i'm not just talking a little out of control-we can deal with it-whatever, let's move on...we're talking, something needs to change!  so here we go again and are going to try different dose combinations of both medications and see if we can start noticing a change. i'm not kidding here people. this is affecting our home life in a big way and something's gotta give. i get it, it sucks. medications are needed and there will always be side effects. but we just need to find what is going to work for us and make our life livable.

here is how you can pray: every fiber in my body feels like it's connected to low voltage electricity. i'm guessing this is anxiety. whatever it may be, it's not fun. i literally feel like i could crack at any second.  i need prayers for peace. for myself and for the kids. also pray for the medical team as they continue working towards what's best for cody.

warning, raw emotion....if you're going to judge, i ask you do not stay.

we've been having good days, but i still feel like i'm on a roller coaster. we shared our good news about cody's last mri and people are relieved and happy. trust me, we are too. but i feel people seem to act like it's over. it's all good now. i'm asked many times a day how cody is doing. and i can tell them, he's doing well. he's tired, but he's feeling good. but at the end of the day, he still has gbm. of course i don't tell them this, what a heartless downer i would be.

unfortunately, there is a huge lack of awareness. not all cancer is the same. just because cody has cancer, doesn't mean we can compare it to any other type of cancer. we are 8 months since diagnosis and im still always researching.

-this is a cancer that attacks the most sacred of all human flesh--an organ that creates our identities.
-brain tumors are in such an eloquent area of the body that surgical and medical intervention may come with a fierce price.
-brain tumors represent an orphan disease, that research funds to push the field forward are not nearly as available as for the far more common cancers
-gliomas are like fingers...cells that creep into healthy tissue. therefore, you're never going to get all of the tumor. it is impossible to get every single tumor cell. recurrence is inevitable
-medical intervention can only do so much, without destroying the patient completely, so you can't be as aggressive as you can be with other organs, because if so, you're compromising the very essence of who a person is.
-the hunt for effective brain tumor drugs has a poor track record
-the largest obstacle to a drug breakthrough is the blood-brain barrier, a natural wall that separates circulating blood from brain fluid to protect the brain from bacteria. the very thing that keeps us healthy, also prevents us from getting drugs to the tumors.

that's the ticket people, the blood-brain barrier. while i get that all advice is well-intended, this barrier is the reason that so many other treatments that are working for "cancer" is not an option for brain cancer. this is what separates it from all other cancers and why treatment is so difficult.

gbm is treatable, not curable. it doesn't matter when it's diagnosed, what you do to treat it, how much is removed through surgery, it always wins.

although things are good now, i'm still haunted by the fact that this is not going to end well.

again, i can't describe the roller coaster of emotions. right now, i'm angry. very angry.

the last two weeks have been crazy busy, and i'm ready for things to settle down. those of you that travel, i don't know how you do it. we have been on 8 different aircrafts in the past 14 days, and i am not a fan. i seriously don't want to even think about another airplane or airport for a long while.

i can't even begin to tell you how amazing our disney cruise was. before we got off, i had myself convinced that i could just stay on the ship forever. it was stressful and a lot of work with the kids, but i loved every part of it.

wednesday was cody's mri and we held his disc close within our possession for our trip out to duke.

the white "stuff" within the circle is the tumor area. there is decreased swelling in the surrounding tissue compared to the last scan in december. cody's heacaches have decreased, so that has been noticeable. otherwise, the tumor area itself continues to look the same as it did two months ago, which is good and bad. the area hasn't shrunk any but it also hasn't grown either. the neuro-oncologist said she will take no growth any day of the week...and so will we!!

the plan is to get cody back on the 5/23 cycle of chemo (vs. everyday that he has been doing), have another MRI and appointment back at duke in 2 months.

"jenny's strength"

there was a box at our door this afternoon that no one expected. cody opened it, and inside were three pillow pets. the kids were excited, but we had yet to figure out where they came from. inside was a note:

- the jenny's strength story -

 

jenny was a 36 year old mother of two girls and a loving wife. she was a stay-at-home mom, dedicated to raising her two girls. her passion was children and gift-giving: she loved to pour out gifts on her own children, her nieces and nephews. when jenny got ill in 2007, her daughters' lives would be changed forever. jenny was diagnosed with glioblastoma and was no longer able to function completely as a mother. her daughters had to rely on others for their care when their father was busy caring for their mom. at times they would stay with relatives or friends, with pillow pets in tow! the girls were blessed to have family, friends, and church members rally around them to support them. what a difference a community of people can make in the life of a child. the girls then had an idea. why not encourage and support other children who are going through a similar circumstance? after receiving a contribution from a local news station, jenny's strength was born. we were blessed to have jenny with us until her passing in january, 2012. the struggle was hard, but the family learned that life is precious, valuable, and that in the worst circumstances, compassion brings light and hope.

 

 

along with the pets were hand written letters to each of us

 

seriously, how amazing is this?

 

the mission of jenny's strength is to provide comfort to children whose parent has brain cancer.

 

how to get involved:

share | our cause on facebook and through word of mouth

connect | us to a child whose parent has brain cancer

support | with your time, talent, and resources

pray | that god would help all of us bring light and hope to others

 

www.jennysstrength.org

 

....but those who hope in the lord will renew their strength.  -Isaiah 40:31

 



cody's been back on chemo for the past week. and unfortunately, back are the days of extreme moodiness and pure exhaustion.

what's coming--
22nd: labs
23rd: mri
24th: fly out to north carolina
25th: duke appointment and fly home


but on to more exciting things. this winter we've been blessed with the gift of spending precious time with the ones we love the most. over christmas, my parents took our family to florida.  and this coming weekend, cody's mom and her husband are taking the family on a 7-night disney cruise. i cannot even begin to tell you how excited we are for this opportunity. we're not sure who is more excited, the kids or the adults :)

update:
cody's chemo came in the mail on thursday, however he left early that morning for a snowmobile trip.  when you've waited this long, I guess what's another few days? he also did not give me enough warning before he left to get a refill of steroids to last him through his long weekend. I've heard the headaches are intense :(

cody's chemo needed prior authorization from insurance, and we are STILL waiting on that. once that comes through, the pharmacy can ship the pills. the oncology nurse that we work with, is absolutely amazing. she answers all of our questions and literally keeps our medical life together for us. we couldn't do it without her!

it is absolutely driving me crazy that cody has not been on any treatment since november. i have joined a few glioblastoma multiforme (GBM) support groups on facebook. this has been both a good thing and a bad thing. it is very informative. it helps to hear others who share our same story and are living this same nightmare. but it is also very real. and can be very scary. 

cody and i went to see our therapist (whom we've seen in the past).  she is wonderful. we will continue to see her, both together and separately. through her facilitation, we've gained a better understanding of what both of us need to guide us through this journey. both cody and i need to talk more. to each other.  it's not fair, and it's not conversations we should have to be having at our age. but it's necessary.  i know some of you don't agree with this, and you don't have to. cody and i need to do what's best for us.  we both have to be very real and honest with each other.  if i can tuck these conversations away and not need them for years to come, what a blessing that will be. but if something happens, i'll feel i will have been prepared.

a lot of learning has taken place the last few days. life lessons about patience, humility, dealing with anger and disappointment, showing love when i want to scream, being there for someone without judgement and just listening. i definitely have not aced these lessons, but am studying hard and can only hope to do better next time :)

a coping mechanism that i have is to remain numb. that's how i deal. you might deal differently or not agree with me, but right now it's how i'm dealing. the last few days a wall has come down and i have allowed myself to feel. i haven't had much sleep and the tears haven't stopped. but along with that comes a loss of control. i can't get my brain to shut off-about the things that i shouldn't be focused on, and turn on-for the things i do need to be thinking about. everything seems to be a blur. it's one of those times where i feel like i've stumbled. and i'm working on getting myself back up and and brushing myself off.

we have visited with cody's oncologist at sanford. he talked with cody over the phone to try to determine the next step with his chemotherapy. it was decided to stop the 5/23 cycle (5 days of chemo/23 days off) and switch him to an every day plan. the oncologist and pharmacist have worked on putting together a treatment plan for him.

wednesday, cody had lab work completed and met with his oncologist. all blood work looks good so we are moving forward with the plan of chemo every day. unfortunately, insurance requires we get his chemo from a mail order pharmacy. and we couldn't agree more with the reviews out there---this company is not a good option. but, insurance companies know best. right? ha.  the order has been placed. now we have to call the company a million times to make sure we get what we need, and wait for his pills in the mail.  (can you tell i'm a bit sour about all of this?)

when we've told people that cody is going to start taking chemo every day, a common question we've gotten is "for how long?"  indefinitely. he will continue as long as he can tolerate it or it is no longer working. at that point is when we try something different.

we have an appointment back at duke in february. cody will not have an mri until just before that appointment, which will be february 23.

follow up

i apologize. i didn't realize i never posted an update after hearing from duke. cody talked to them on december 23rd after they viewed his mri that we had sent them. they were not as confident as mayo clinic was in regards to the "radiation effect" and the scan was concerning to them. they felt the best plan was to increase steroids, continue with another round of chemo and do another scan in 4 weeks from his last one. with the holidays thrown in there, we still feel like we are in limbo and don't yet have a set plan. cody has increased his steroid dose, but we don't know what this next chemo schedule will look like.

of course, i'm sure you all know we took a vacation to florida over our christmas break. i will get to that in the (hopefully) near future :)

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.