Stage IV Glioblastoma

The Drs keep telling us that it is basically unheard of for Cody to have survived the expectations of his first diagnosis. We can only hang on to the hope that his brain isn't going to play by the rules this time either.

The recommendations of the Neuro Oncologist is to get Cody started on chemotherapy (Temodar). He has looked over a variety of clinical trails, and does not feel that Cody is a good fit for any of them at this time.

The plan for now will be:
Starting chemo in about 2-3 weeks after he's had some time to heal from surgery. We are planning on doing this in Sioux Falls. MRI's every two months to monitor stability or changes. They will use Temodar as long as it will take us and reassess changes as they come or as needed.

The magnitude of this diagnosis shakes me to my core, but we will not give up hope.

4:00 moved out of ICU and onto the regular floor. Very anxious to take a shower!

Now, we just wait.

Another good night and good morning. His face is extremely swollen today and will continue to get worse before it gets better. So far this morning Cody has gotten his head dressing off, drain tube out, arterial line out, and catheter out. They got him out of bed and into a chair for breakfast. Hes liking the changing of positions. The plan for today is to move him out of ICU. Right now we're waiting for a room to open up.

The surgeon was also in this morning. He said he had talked to the pathologist but will not giving us the diagnosis until it's written in the report. He will likely have that for us this afternoon. After visiting with Cody, he had me follow him out into the hall. He told me that the tumor looks highly malignant and wanted to prepare us for what they will tell Cody this afternoon. Cody is going to need all the support he can get.

We knew. We all already knew. It's not going to make it any easier but we have all prepared ourselves for this.

The amount of support we have behind us is incredible.

We finally got to talk to the dr. tonight at 9:45. The results of the MRI looked good! Cody also got the go ahead to start some food. So his 10:00 dinner was two cups of jello, toast, and ginger-ale. He thoroughly enjoyed it :)

Cody's done a lot of resting this afternoon and evening. But when he is awake, he is doing so well!

We're having a pretty good afternoon. He's had some visitors and has been awake quite a bit. He has been talking more, joking around, and has a good memory. His left side is continuing to show improvements, but still has some weakness in his hand/fingers and paralysis on the left side of his face. We've seen the improvements throughout the day, so we have no doubt it will continue to get better. We haven't seen the dr. amd still don't have the pathology report, but today has been a much better day than yesterday!

Cody has been extubated and is off sedation medication. So far so good. He continues to be in significant pain and is very sleepy and out of it. We are trying to just let him rest.

Cody had a pretty uneventful night. He did spike a temp, but that was resolved with lowering the room temperature and some ice packs under the arms. He was pretty heavily sedated through the night. This morning they tried lowering the medication in order to get him somewhat responsive and attempt neuro exams. He is pretty darn ticked at that breathing tube. When the sedation is lowered he is very aggitated, so they have to increase it again to keep him comfortable.

A post-op MRI is always completed and the surgeon felt it would be safest to attempt it this morning while Cody was still intubated and asleep. After that they are going to try extubating him. Because of the heavy sedation medication during the night, they say he could be pretty loopy and confused today. We can handle loopy, we just don't want to see any more seizures.

I also realized last night that I didn't post how the surgery turned out. The surgeon felt like he was able to get a good resection of the tumor that was there. But it appeared as if the boundaries (the little fingers spreading into good brain tissue) had expanded. Just looking under the microscope he felt it looked pretty aggressive, but won't say for certain until he has the pathology report written in front of him. We will take that as it comes.

The prayers are coming in! Codys CT scan didn't look abnormal. They saw no bleeding (which is a huge blessing!!). It did show swelling, which of course is to be expected. That is what they are figuring was causing the seizures. He is intubated and sedated. He is not however completely sedated. And he does NOT like that tube down his throat! They do not want to sedate him so much that they can't get Neuro checks on him. They want him to be moving some when they try to arouse him. In between times, we like it best when he's comfortably resting. They have had to tie both of his hands down as he keeps grabbing at his breathing tube.

Earlier tonight when he was having his seizures, he also stopped moving his left side. He could squeeze with his right hand and wiggle his right toes, but nothing on the left. They also assumed that was from the swelling and would only be temporary paralysis. Within the last hour or so and given steroids, he has started moving that left side again!!

It has been a tremendously long day here today and we're hoping to have a peaceful night. I have my chair pulled right up across from his bed. With the lack of sleep lately, I'm thinking my body will have to crash at some point. Maybe tonight I will get some rest :)

We have done hugs, kisses, and "see ya laters" and Cody was whisked away to the pre-op room. We do know he is the first case of the day, but they said actual surgery won't start until 8:30/9:00.

Update:
7:57 entered operating room

9:20 surgery began

11:40 nurse communicator let us know that things are going good and Cody is doing well.

2:00 surgery is finished and they are currently closing him up.

2:40 in recovery. It could still be a couple of hours before we're able to see him.

4:50 still waiting :(

**we were able to see him. He was in a lot of pain and very uncomfortable. After a short while he started having seizures. Within the last hour he's had 5 seizures, two big ones. The plan was to intubate and put him back to sleep to let his brain rest. Since then he has come out of the last one with the medication they gave him and now are not going to intubate and see if he can stay out of a seizure with just the medication. a few of us saw the seizures and I witnessed them all. Not a pleasant experience. But we do know he is on the safest, best place possible right now.

Please please pray. We are told seizures can be common after brain surgery, but not something they want to see. We are all pretty shook up right now. I hope this even makes sense.

**now they have decided to intubate again. He is still ok and not seizing, but they want to do this as more of a precautionary measure. They'll keep him sedated through the night.

**he has been taken for a CT scan to see if they can figure out why he's having the seizures. They are settling him in his room now.

unfortunately the only information we got tonight was the time Cody needs to register. We didn't get an actual surgery time. He has to check in at 5:45am so we're guessing he's the first patient of the day.

Cody had an mri this morning. the purpose of the mri was to get a very precise mapping of his tumor in order to help the surgeon tomorrow with surgery. We did not have a follow up or consultation after the mri, so we have no new information as to how the tumor looks or if there have been changes. Unfortunately I can't get a photo on here from my phone, but during the scan, they placed black dots around his head, covered with tape.

I know many are anxious to find out when surgery is scheduled for.  We have a number to call tonight, starting at 8:15, and they will tell us what time his surgery will be tomorrow. I will update as soon as I know something.

Right now Cody is napping. We've done about as much around town that we can possibly find to do. We have a lot of family coming this afternoon, tonight, and tomorrow to be here for surgery.

Please pray for peace in the coming hours as anxiety is getting high.

from the bottom of our hearts

my day started out receiving this video from my brother-in-law. he was right, i did enjoy it. i enjoyed it enough that i want to share it with all of you. he also had these encouraging words for us:
"be encouraged by John 16:33 -- I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
thank you.

my mother-in-law offered to come this afternoon to watch the kids so cody and i could take some time just for ourselves. this was seriously a blessing. we had taken some time for the two of us this weekend, but we spent most of our time talking about things that were certainly not enjoyable. tonight we were able to just enjoy each other's company and the peaceful perfect-ness of our night.
thank you.

when we got home, fresh flowers had been delivered and now adorned our table. how amazingly thoughtful of these people!
thank you.

and we absolutely can not forget about any one of you. all of the facebook messages, private messages, emails, phone calls, and texts. i have not been able to respond to everyone individually but we are blown away by the support we are receiving as we start this journey again. it's scary. and we couldn't do it without you.

so thank you. thank you from the bottom of our hearts.

the tough stuff

the kids and i are staying in Brandon another night, as i have a much needed appointment tomorrow. i have had a rough night tonight and the kids saw me crying. as we were outside sending daddy off, kenley looks at me and says "mom, do you think we should pray?"

absolutely.

so there i sat with my three babies on the steps of the patio, and we prayed our hearts out.

it was then bath time. i was running the water when she came running in and wrapped her arms around my leg. "mommy, i think you are going to be alright."  "i just want to take care of you and daddy."  what an amazing little girl.

we had the discussion with them this past week. they are old enough we have to be honest with them (as honest as 4 year olds can handle), yet they don't quite understand it all. but the part that breaks my heart the most is the fact that they do feel our pain. even if we try to hide it, they can see the pain we are in and those precious beings just want to make it all better.

and because of those precious beings, we had to have some serious discussions this weekend. apparently when you are 23, you think you are invincible. but 10 years, a marriage, and three kids later we want there to be no questions unanswered.

and as gross as those conversations were, they were necessary.

mayo clinic

when we drove into town on Tuesday night, the memories came flooding back. it had been 9 years since we had been to Rochester and in an instant it felt like yesterday.

we met with dr. Johnson, (neurology/oncology) and dr. Atkinson (neurosurgery).

dr. Johnson did a full neuro exam to look for any deficits.
dr. Atkinson talked about the concerns and the plan for surgery.

here is what we know from the neurosurgeon:
-the tumor is about the size of a large grape. located in the right frontal lobe, just above his eye. other than his clean scan in 2014, we don't know how long it's been there or when it started growing.
-primary brain tumors (those that start in the brain vs. traveling to the brain from another source of cancer) are difficult to treat. they are not a nice round ball of tumor. they have finger like structures that stretch out from the tumor into healthy brain tissue. therefore it is impossible to get all of a primary brain tumor.
-unfortunately in the last 25/30 years there has not been a whole lot of progress treating brain tumors in adults.
-he was surprised that cody made it 9 years before it came back.
-there really is no cure for these brain tumors. they just continue to treat as long as they can.

the plan:
-he will have a "planning" MRI on june 22nd
-surgery has been scheduled for june 23rd
-surgery is estimated to last about 4 hours with a hospital stay of 1-3 days
-by removing the tumor they are able to biopsy and come up with a diagnosis
-a treatment plan will be made after we know the pathology report

often times when tumors recur, they come back more aggressive and at a higher grade. his initial diagnosis was gradeIII anaplastic astrocytoma. it would be our biggest nightmare for it to have changed to a gradeIV glioblastoma.

so that's what I know for the facts. i'll have to save the emotions for another post. if you have any questions, feel free to comment and i'll try to answer the best I can.

most importantly though, cody needs your continued prayers.

so far, our summer

i absolutely hate wishing our days away, but Wednesday can't get here fast enough. we're getting very anxious. i've been doing a lot of reading, which i totally know is not the right thing to do. but with my anxiety, it makes me feel better when i walk into a situation "somewhat" prepared. that way, i'll either be pleasantly surprised or won't be shocked with a devastating blow. it's what works for me.

we continue making the most of our summer. the week started with bible school in Brandon. our church is awesome and has a bus that picks up and drops off the kids. the kids were super excited. everyday coming home sharing their excitement for god's word and asking when they get to go back. we were blessed with such a great team and all of the efforts put in to making this happen.

 on the last day, the kids had a program and the church provided lunch. it was fun to see first hand what the kids had been learning. unfortunately, kenley ended up sick for the week and was only able to go the first day. she was heartbroken.

at the end of the week we took our first trip to the zoo. the weather was absolutely perfect and the kids were thrilled with it all. they are at an awesome age right now and the ability to see the world through their eyes was priceless.

{this boy was seriously exhausted.}

thank you grandma deb for making the day so special!

and last, i leave you with this. because i honestly don't know what to do with him. he is obsessed with all things inappropriate, including peeing outside or choosing to run in his birthday suit :(

{yes, i happened to glance outside and notice he is completely pant-less}