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.