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}

loving the outdoors

over memorial weekend we went camping with great friends at walker's point on lake madison. other than one full day of rain, we had nothing to complain about. and the kids (and us) and had a great time!

heading to rochester

finally, we have a date.  cody has been set up for appointments at mayo clinic on wednesday, june 10th. his first appointment is at 7am that morning, so we will head to rochester the night before. cody will meet with both the neuro-oncologist and the neuro-surgeon. both of which were on his team 10 years ago!

i'll be honest, the next 2 weeks will be difficult. but at least we're in the books.

the waiting is horrible

so this is what we know so far....

the nurse at Sanford talked to someone in the neurosurgery department at mayo this morning.. they stated the dr received codys mri on Tuesday but still needs to review the mri images. he will then let staff know when to get Cody scheduled for an appointment.  they said this could still take 2-5 days before we hear anything.

we are camping this weekend and are hoping to enjoy ourselves.

feeling blessed

wow. i am so blown away by the overwhelming response that the blog has seen just by the simple fact of some family members sharing it on facebook. if there is anything we can ask any of you right now, it would be for prayers. thank you, to all of you that we don't even know but are connected to in ways of family and friends.

update on cody....unfortunately there is none, yet. cody is stubborn and is giving Rochester the time they asked for and are waiting to hear from them today or Monday. he said if we haven't heard anything by Monday afternoon, he will call them. [update: I started this post last Friday. He did call Mayo on Monday and they are STILL waiting for his MRI to come in the mail. Grrr..but as soon as they review it, they will call with an appt.]

other than cody's new news being a time of stress, our family has been busy this past week.

last Monday started off with kaden and kenley's preschool graduation/program...
Kaden was a poop the whole time, but Kenley was a rockstar!!
Untitled  from Holli Finke on Vimeo.

Tuesday was the last day of swimming lessons. They both passed!

Wednesday was the last day of preschool for the twins.

Thursday this dude turned three!

Friday was the last day of school for me. now we just need warm weather, so it feels more like summer rather than winter :(

Sunday we celebrated Paxton's birthday.

the kids keep us busy and our minds occupied. but we are anxious to get the ball rolling and do what needs to be done. thank you all for keeping our family in your prayers.

there was going to be a party

no plans had been made, but the ideas were running through my head.  i was going to have a party to celebrate 10 years cancer-free. this july would have marked the 10 year anniversary of cody's initial diagnosis. but this past Thursday, the thoughts of planning a party changed into a whirlwind of emotions that came flooding back.

cody's mri this time around showed changes from previous scans.  when the dr. let us look at the images on the computer, we weren't able to see any "tumor" per say, but there is new swelling in the brain. it's in the same location as before. given his history, the swelling is likely caused by new tumor growth. his oncologist did not feel comfortable waiting another 3 months and repeating an mri to look for continued changes. he felt the only way to have 100% certainty, is through a biopsy.

when we checked out after his appointment, his after visit summary stated: "consult to rochester for possible recurrent brain tumor."  cody's response: "well that was a kick in the nuts."

so that's what we're waiting on now. mayo clinic contacted sanford with requests of cody's previous scans and medical records. the nurse said to give them 4-7 days before we hear from them.

of course the waiting is the hardest part.

shit just got real tonight when cody wanted to talk about it. if you know cody, you know he's not much into talking. about anything. but he asked me if i'm praying for him (of course, all the time) and he asked me if i think about it much (again, all the time). but for him, things are very different this time around for 3 reasons...

celebrate the resurrection

[he wanted nothing to do with pictures, but tried so hard. bless his heart]

 

 

[[at least we had one who was in the mood for photographs today]]

 

 

we all have 'em

So, I recently read this post over at Faith&Samuel, and thought it was a great idea. Why not let others in on some of our little secrets that might classify us as ca-RA-zy.....

 

***

if i am singing along with a song and miss a word that has an "s" in it, i will have to go back and sing it again, making sure i hit the "s"

 

***

socks, of any sort, freak me out. i am very fussy about socks. and if they are twisted (on you or me) my anxiety is through the roof

 

***

my dream job is a labor/delivery nurse. that might sound normal, until you hear that there is absolutely nothing about being a nurse that i would be able to handle. i hate blood, needles, pain, and overall gross-ness in general

 

***

i can not go to bed with the toilet seat up. i will actually get out of bed to double check this

 

***

i always check behind the shower curtain, every.single.time. i walk in to the bathroom

 

***

before i had children i was very organized and ocd clean. since kids, i absolutely can not get myself back to that place

 

***

strings. this is a difficult one to explain. i don't know what it is about strings, but have never been a fan.

 

***

i am a very picky eater and i hate all kinds of veggies. if there is a veggie on my plate, i will pick around it making sure not to get even.one.tiny.piece of a vegetable in my mouth

 

***

i am terrified of answering the phone or making phone calls

 

***

my niece is only 4 months older than kenley and they have always been pretty close in wearing the same size clothing. if my sister and i go shopping together, i have wicked anxiety thinking about her beating me "to the good stuff."

 

***

i can not drink out of a straw without biting the end

 

***

i type with my toes. not actually, but my toes are always moving as if i were typing them on a keyboard.

 

 

so there ya have it....weird, i know.

 

how about any of you? willing to share some of your crazies with the rest of us?

time to swim

Paxton was super excited to start swimming lessons last night! We registered him for the Parent/Child class that takes place on Thursday nights. We got to the YMCA, put on his swim suit, took him potty, and then I went to put on my own suit. I ended up calling my husband and asking "are my suit bottoms still laying on the bed?"   UGH!!  What parent takes their kid to their first swimming lesson and doesn't remember all of their swimming suit?!?  Thankfully, the instructor took him in the pool for me.  I would have been heart-broken to have to tell that little boy that we had to go back home :(   There were only 4 children/parents in the class, but it was so much fun!  However, Paxton was NOT a fan of someone else telling him (after only 30 minutes) that his time in the pool was up.

Because lessons end and our drive home is about the time he would be getting ready for bed, I decided that we would just do a shower after and put him straight into his jammies. I think this was a good decision, he was tired....

Overall, his first "fwimmin' yesson" was a success!!  Can't wait to go back next week :)

TBT

how do you stop them from growing?


time to say bye-bye from Holli Finke on Vimeo.

all in the head

In February, Kenley had an appointment with a pediatric neurologist. This appointment had been scheduled for many months (during the deep dark trenches of her nasty behaviors). Because it took so long to get in, we decided we would keep the appointment and see what came of it. When Kenley was born, she suffered a brain bleed as a result of using the vacuum for an assisted delivery.

After only 6 days in the NICU, her brain bleed resolved and we were able to take her home.

Because the delivery/recovery of the twins and myself in the hospital, we really felt we had no closure from this "brain bleed."  So when we were referred to neurology because of Kenley's behaviors, in the back of our head we were hoping to get some answers. For four years it has haunted our minds to wonder if there were some lingering effects of this bleed.

When we met with Dr. Kruer, he was able to put our minds at ease. He was able to pull up her scans from when she was born and compare the brain bleed to that of when she was discharged. He felt confident that it should not have any current impact and did not see any problems "neurologically."

We can't tell you how relieved we were just to have someone take the time to give us some answers that we were never given in the hospital.

adios pampers

Big news in our house that I haven't shared.  We have traded in these:

 

for these:

exciting right?

 

During Christmas break, I was hoping to get the little man potty trained. But just like every plan I make, something comes in the way. With Kenley getting her tonsils out, besides the hustle and bustle of the holidays, there was no way I was ready to clean up accidents. But it wasn't long after break that our daycare provider was ready ;)  She put him in underwear and we never looked back. I think it took roughly four days to get the job done.

 

And we are no longer spending money on diapers!!! That's an amazing feeling.

 

He is not yet trained during the night (although there are many nights where he wakes up crying he has to go potty, and his diaper is still dry!)

 

As thrilled as I am that diaper money can be put elsewhere, it's just one more reminder that my baby isn't a baby anymore.

And that's rough. 

i ask of you a favor

So, I have these friends. And although they may not know how special they are to me, they both have a special pocket in my heart that they fit right into.

 

They've had a curve ball thrown into their life, that has and is causing great pain and heartache. 

I think about them constantly and I ask that you pray with me for them.

 

I found this poem that hit me in the stomach. I hope I can be this kind of friend.

 

"Don't tell me that you understand,

Don't tell me that you know.

Don't tell me that I will survive,

How I will surely grow.

 

Don't tell me this is just a test,

That I am truly blessed,

That I am chosen for this task,

Apart from all the rest.

 

Don't come at me with answers

That can only come from me,

Don't tell me how my grief will pass...

That I shall soon be free.

 

Don't stand in pious judgment

Of the bonds I must untie.

Don't tell me how to suffer,

And don't tell me how to cry.

 

My life is filled with selfishness,

My pain is all I see,

But I need you, and I need your love...

Unconditionally.

 

Accept me in my ups and downs,

I need someone to share,

Just hold my hand and let me cry,

And say, "my friend, I care."

 

                     J. Hendel

 

 

 

a little risky

Last night Cody had a crazy idea. He suggested we all, as in all 5 of us, go out for supper at Pizza Ranch and then attempt to get groceries. GASP!! What?!? What the heck was he saying?? Did he seriously just say those words out loud???  It gave me anxiety just thinking about it, but (reluctantly)agreed. Our family doesn't typically risk taking the kids into public.  The twins used to go everywhere with us when they were little. But as they've gotten older and we've added Paxton into the mix, we usually try everything in our power to do things without having to take the kids. It's a catch 22 really. They don't have a lot of experience because we don't take them anywhere. But the reason we don't take them anywhere is because they can't seem to keep their behavior in control. You might think I'm joking, but this is typically what an outing with all the kids looks like:

Do you get why I cringe any time I think about taking the kids with me when I need to get something done? But last night, for some reason I was willing to risk it.

And I'm glad I did. Because we had a great night. The kids did great!! We enjoyed our dinner and our grocery trip looked less like the above and more like this:

Ok, so maybe it wasn't quite this beautiful, but I would definitely call our evening a success.

Go us!  =)