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.

Today was an exciting day. Cody had his staples removed!

[[still a large fluid collection on the right side between the skull and skin]]

 

As you can see, Cody has lost all of his hair in front of his incision. He had burn/blisters from the adhesive used during surgery. Once those scabbed over and started disappearing, so did his hair :)



Cody and I are both very quiet people and don't like to draw a lot of attention to ourselves. It is hard for us both to comprehend the support and outpouring of love we have seen from family and friends, and even people we don't know, through this time. We have our family and our close knit group of friends, but otherwise we aren't well known. My entire life, I've been accused of "being stuck up" or "being better than everyone else" simply because I am shy. Cody and I are both so very similar in this way. This is why we are in absolute awe at the messages, meals, donations, help and support that we are receiving. We are truly humbled by it all.

And THANK YOU to those that continue to keep our family in your thoughts and prayers. Although the fast pace and shock of the initial surgery and diagnosis is over, our struggles and fears will continue tomorrow, next week, next month...

I am guilty for not responding to every email, Facebook message, text, phone call, etc. but that in no way means that every single one doesn't touch my heart in one way or another. You all are amazing. And even if Cody and I like to keep to ourselves and think we can take this on alone, we are smart enough to know that it is through all of the prayers and encouraging words of YOU, that are helping carry us through.

possibly a new option?

We met with Cody's oncologist this morning in Sioux Falls. After first discussing what his chemotherapy plan will look like, we started chatting about the clinical trials at Duke University. Right now, they are doing some of the most promising treatments in the nation for Glioblastoma. Through the Dr.'s recommendation, he feels like we have nothing to lose. Cody is young, strong, and healthy.

The Dr. wasn't recommending Cody start chemo for another couple of weeks anyway, so in the meantime, he is going to make the contact and referral to Duke. At this point, we don't know if they would even accept Cody or if he would meet their criteria for any trials. But we definitely left there excited about the possibility. Of course, now we wait. Again. They are hoping to get things figured out within the next week or two. If they choose not to accept Cody, then his chemo plan is set and ready to go. Cody's ready. He's ready to give it all he's got.

In other news, his back is doing much better and he feels like he's getting better headache relief from his new pain meds. His energy remains limited. He is anxious to get back to work, but I'm not sure how he's going to manage that when he's still sleeping 20 hours a day!

in sickness and in health

No relationship on earth, other than my relationship with Jesus Christ, is more important than my relationship with my husband. Cody and I have been together for 16 years and married for 9, and we haven't always had an easy relationship. We've had our share of struggles and we've managed to work through them. Some easier than others.

I have been fortunate enough to receive some great information on marriage that has helped Cody and I reveal the heart of Christ within our marriage.

A verse read at our wedding was Genesis 2:24
"Therefore a man shall leave his father and mother and be joined to his wife, and they shall become one flesh."

--the husband-wife relationship is the permanent relationship. "What God has joined together, let man not separate." (Matthew 19:6)
--there should be no closer relationship than that between two spouses.
--and they shall become one flesh -- Marriage takes two individuals and creates a new single entity. There is to be such sharing and oneness in every aspect that the resulting unity can be best described as "one flesh." 

Once we re-discovered and immersed ourselves in God's design for our marriage, things fell together unlike never before. With a Christ-centered relationship and an unwavering commitment to making it work, our marriage has flourished- just as God designed.

I can't imagine going through this experience with a wavering marriage. When I entered into this covenant relationship, I intended to honor my vows....for richer or poorer, in sickness and in health, to love and to cherish, till death do us part.

I love you Cody Finke, happy anniversary! And I pray that "till death do us part" is a long time from now.

we finally made it back home to Brewster today and it feels great. with the exception of the few hours we were home on the day of discharge, we haven't been here since june 21st.

two weeks after surgery, this is what's going on:

head pain:  pain continues to be significant. it's not getting any worse but it doesn't appear to be getting any better either. I spoke with the surgeon's nurse today and they are going to try another prescription for pain medication.
back pain:  still having pain in his lower back, butt, and down his hamstrings. although in the last couple of days, this has visibly improved. he is moving with more ease. he continues to seek treatment for herniated disc.
seizures:  under control with the dosage change of seizure medication.
energy:  none.  he spends most of the day in bed. if he does get up, it's for short periods of time and he shortly finds his way back to the bed.
appetite:  not great. he will not ask for anything or eat anything on his own. if you dish a plate up for him, he will typically eat it.
sleep:  this is another area of frustration for him. with his pain, he struggles to find a comfortable position. he has usually been awake around 2am simply not able to sleep anymore.
activity level:  none. his biggest activities involve showering or moving from the house to the car to get to appointments.
incision site:  looks great. will plan on removing staples within the week.
attitude:  crabby, but I can still get a smile out of him.


10 years ago, cody had absolutely nothing to complain about. he had a smooth recovery and quickly returned to all his normal activities. this time, he is struggling. and it's thoroughly annoying him that he can't do the things that he wants to do.

also, we are still waiting to hear from oncology in sioux falls. i've made multiple contacts, but we have yet to hear of an appointment time.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
Philippian's 4:6-7

(a dear friend shared the following devotion with me, and it was perfect)

.......... 

Dear Father, you are the Prince of Peace and the great I Am. You are my helper and my redeemer.

I need your help today. I am weak and frail and tired. Give me the strength to get through just this day and the desire to work as if I am doing it all for your glory.

Help those who are carrying especially heavy burdens right now. They need your power and peace that goes beyond our understanding.

I am so grateful that I can come to you and present my requests at any time. Thank you for giving me peace and rest even in the hard times.

In the name of the Prince of Peace, I pray, amen.

 





Today, I have the overwhelming feeling of frustration.  And I feel like I don't have the right to feel that way. After all, he's the one who is sick. I'm just the caregiver. There is NOTHING in the world I want more right now, than to take his pain away. I get the fact that he's in pain and I can't imagine what he's going through.

BUT,

I'm busting my ass to not only make sure he gets Keppra 2x/day, Medrol dose pak 6x/day, Oxycodone 6x/day, Tylenol 4x/day, Reglan 4x/day (for headache), DocQLace 2x/day, and Miralax 1x/day, but to also make sure I don't drive too fast, brake too fast, hit bumps too hard, don't laugh when I think he's funny but he's not trying to be funny, don't move him too much when I roll over in bed, tell him when he's taking a steroid so he's prepared for the nasty taste in his mouth, make sure he has a straw in his cup, give him enough time to get out of bed before we need to be somewhere, help him get out of bed but not pull him up too fast, be there when he gets out of the shower to help dry his legs and put on his shorts, put his socks and shoes on, keep up with phone calls and appointments, updating family and the blog.

I'm starting to crack. And I'm afraid the crack is going to get bigger. And if there's anything I do NOT want to do, is break. Because if I break, I don't think I'll be able to pull myself back together.



here is a quick update:

-we didn't last long at the campground tuesday night. cody had a horrible night and we were out of there by 10:00 the next morning (with no plans of going back). we'll see what the weekend brings.
-today we met with the neurologist, as a follow up to the seizures. he ordered an EEG that cody was able to do right away following his appointment. we will also monitor his seizures for the next week to determine possible dosage/medication changes. from what cody describes, the dr. feels like what he's experiencing would be classified as complex partial seizures. it is likely cody will be on anti-seizure medications the rest of his life.
-the neurologist also ordered an mri for cody's back. thankfully we were able to get that in as well this afternoon. it was nice to get it all done in one day, but cody is definitely worn out tonight. he showered and went straight to bed.

although the day was busy, we left with no new answers. here's to hoping something gets figured out soon.

just a few photos

I think it's easier to pray for someone when you can put a picture behind the story.

 

{{amazing support from amazing family and friends}}

 

{{after seizures when he was put back on the ventilator}}

 

{{my view}}

 

{{34 staples}}

 

{{first meal after surgery}}

 

{{up in the chair}}

 

{{annoyed that the swelling had moved from his right side to his left, but super pumped about going home}}