Let the tests begin

So after getting a call this AM, we now have the colonoscopy and the upper endoscopy scheduled for next Tuesday (28th) in the AM. I am super relieved to at least have it scheduled and have babysitting set up. Not so excited to do the prep kit. This whole waiting game is the worst. I've heard from friends in the midst of their own cancer trials that waiting is the worst-and I'm really hoping that we can minimize ours.

I'll update again when we know when the other two tests will happen. Thanks for the prayers:)

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update on first day of test

So I went for my CT scan this morning after putting Finn on the bus for his first day of school......

Finn loved the school bus, by the way.  The CT scan was pretty uneventful.  Had to drink some stuff with dye (but they mixed it with sprite so it was like a treat), then sat for about an hour to wait for the juice to work it's way down, and the scan took all of 5 minutes and they injected some dye into my IV and that was about it.  Painless, the way I like it.

Then I went over to the doctor towers and met with Dr. Brabbee (colon/rectal surgeon).  He was super great, and really nice.  He squeezed me into his, what I'm sure was very busy, schedule.  He pulled up my CT scan and ran through it and didn't see anything alarming, so that's a nice encouragement.  However, he stated that he's not a radiologist and it hadn't been reviewed by them yet, so he couldn't say anything for sure.  Either way, it was nice to NOT get devastating news.

He called the oncologist while I was there and they want to do a group of tests to be able to rule anything worse out.  My OB/GYN Dr. Super (yes, that's his awesome name, and he is SUPER) told me they'd want to do this to make certain that the cancer is/was contained just to my ovary.  So we are waiting to hear from the surgical scheduling women about when but I will be having an upper and lower endoscopy, PET scan, and a lower bowel series.  Once I know when those will be I'll update so you can be praying for me and for the results to come back perfectly clear.  Stay tuned....

and here's a picture of our cute girl.

The beginning of what we hope is the end to all this cancer talk

I've talked with the nurses at my drs office and I am going to go for my CAT scan in the AM and then go meet with the colon/rectal doctor right afterwards. I will schedule my colonoscopy at the apt tomorrow so I will post when we know that will happen. I don't know how quick we will get the CAT scan results but as soon as we have them I'll post them.

Please pray Patrick and I get some good rest tonight. We are running on empty. Thanks:)


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Another date on the calendar I want to forget

So as we are trying to get information out to everyone as soon as we can we've decided this is a good way, since our brains are mush and we can't remember everyone's email addresses. You can plug us into your google reader so new posts will show up and we will try to link the posts to Facebook-I'd I can figure that out. Hmm.

We really appreciate all the prayers and thoughts of us during all of this.

Here is a copy of the email we just sent out Friday for anyone who hasn't gotten to read the information and below it is the original email from my surgery Tuesday.


Hey Everyone,
Thanks for all the prayers and meals and babysitting that's gone on for the last week. We appreciate it. It looks like we may need you all to continue helping us and praying for us over the next few weeks.

Katie's doctor called us today with the results of the biopsy. Kate was taking a nap so I answered the phone and he asked me to wake her up so we could go over the results together. I woke her up and he proceeded to tell us that the results were "Not really good." He went on to tell us that it wasn't as bad as it could be, but the results were "concerning." Apparently the biopsy showed that the ovarian tumor had some cells which appear to be intestinal in nature. For those of you who don't have a biology background, that means one of two things. Either the tumor has metastasized (travelled) from the intestines, or when the ovary turned cancerous, some of the cells differentiated into intestinal cells.

If you remember, Katie's tumor had three possibilities: 80% chance of Benign, and easily treated, 10% borderline and complicated to treat, and 10% metastatic and horrible and really difficult to treat.

Apparently Katie has the "Borderline" type of cancer seen with the mucinous cystadenoma. This means that she may be in for more surgery, specifically taking out her appendix and possibly her colon, or that she may be in for nothing. We have to do more tests. Katie will be seeing a team of doctors who are all very smart and hard working, and they will begin next week to do a colonoscopy, MRI, CT, and possibly a PET scan. If all of those tests come back negative, we are out of the woods and have nothing to worry about. That will basically mean that the cancer was just ovarian cancer and when Dr. Super removed it, along with the ovary, he cured her. If the tests come back positive, it means that the cancer has come from other areas of her body and we are in for more surgeries, and possibly chemo/radiation/etc.

As you can imagine, Katie is not doing really good. I'm just kind of in shock, and acting like everything is fine. So we are dealing with it kind of like we deal with every stressful thing in our life. Katie cries, and I shut down. But we want you all to cry and shut down with us. So please do. And, if you know anyone who cares about us, and you'd like to forward this email, please feel free. We would love to talk to you each individually, but unfortunately, it's a little hard to do when you are crying and staring at the wall every few minutes. We'll let you know if there's anything we need. Please keep us in your thoughts and prayers. And, if this is the first you are hearing about our stuff (I'm looking at you Erin Mariscall and Steve Sykes) please forgive me for the oversight. I'm not really thinking clear the last few days.

Thanks everyone. Tons of love to you. Please forward to your significant others.
Patrick


And here's the original email after surgery Tuesday, but correction that they DID remove my left ovary and fallopian tube.

Hey guys,
Just wanted to give you the update on Kate's surgery. Kate is out of surgery, and the surgery went well. The doc was able to get the mass out, without removing any ovaries or Fallopian tubes, which we were a little worried about. It turns out that the mass was pushing on one of her tubes, and that may be why we weren't able to get pregnant.
There was a little concern that the doctor was possibly going to have to open Katie up, like he had for the c sections, but he was able to do the whole thing with a surgical robot, so that was good. So Katie will be able to go home in a few hours.
Now, the somewhat bad news. We had assumed that the mass was an endometrioma. Which usually is just an easy fix. Just a removal and that's it. Dr Super (the ob) just came in to talk to me after the surgery was completed, and told me that it was actually a tumor. A large tumor. A quick glance at it and quick biopsy, says that it is a "mucinous cystadenoma."
It is more than likely, a benign tumor and the best way of treating it is removing it, which he already did. However there is a slim chance that it could be metastatic (from somewhere else in her body and therefore much worse and bad.).
We will not know for sure until the biopsy results come back, hopefully by Friday. So please keep my family in your prayers. I'm hopeful that all will be well. Please forward to your wives, as many if them will want to know. I find myself in an odd position of letting you all know about this before Katie herself knows.
Thanks everyone.
Patrick


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A Melancholy Anniversary-Dravet Syndrome Foundation

I'm a positive thinker.  One of those people who is able to share a tragic story with a sympathetic smile on my face.  It's not that I'm being fake, it's that sadness is an emotion I've been uncomfortable with for most of my life.  I'd like to think that most people don't like to be sad.  I'm like Claire, the mom on Modern Family, who smiles when giving bad news because she's too worried about how her son will accept the news to focus on how sad she really feels.  However, I've accepted that I don't like to be sad, but learned to experience how deep it can run when sad things happen. I've learned to feel sad and accept it.  To understand how so quickly on tear can turn into a downpour and then feel like a never ending tsunami.  But then once that storm has cleared I'm able to take a deep breath and see the sunshine peek through and the waters still. 

So I know I haven't always displayed or talked about our struggles with Finn's condition, but I keep that pain close to my heart.  I guard it carefully.  I don't mean to make it sound like it's always this painful revelation when looking at him, but there are definitely moments of dark sadness that we as a family, and alone, have to walk through.  We are so grateful for the close family and friends that have chosen to help us carry this burden when it is just too much for us alone.  Our hearts break just watching them experience the pain of seeing a seizure, either for the first time or the 100th.  We can't count how many heartfelt prayers have been said for our little boy, and how much it has positively impacted our outlook on his condition.  Hearing that our friends kids are learning about God's power, strength, and healing because they are learning to pray for Finn is humbling to say the least.  To know that Finn's story and ours is impacting God's kingdom for the better is an amazing feeling.

I'm learning to understand and sympathize with what people mean when they say someone in their family has an "invisible disease/disability".  It's when you "look" completely normal and people don't understand when you or a loved one acts in a way that doesn't match their outward appearance.  Finn looks like every other little boy, but he can't comprehend danger or social situations like other little boys.  We often get looks of disbelief at parks when Finn runs out in front of another child on the swings or when he pushes another child out of the way to get to the slide or when he just lines up rocks on the sidewalk.  He just doesn't understand the environmental danger of the world or socially acceptable standards that others may take for granted.  I often feel like the parent that is just having to explain over and over again that I'm not a bad parent, and Finn's not an unruly kid.  I know I'm not alone in feeling this way, whether your kids are disabled or average.  I just wish we lived in a world of more compassion and understanding.  It sure would make being a mom a whole lot easier.  But Finn is truly amazing.  His smile lights up a room and his man giggle is so contagious it has you laughing along in seconds no matter what mood you are feeling.

As a parent, I try my hardest to teach and love Finn in a way that he will understand.  I want him to grow knowing that all those around him are his supporters.  I want a cure.  Don't get me wrong, I don't want to change Finn, I want to take away the pain and suffering that he encounters on an almost weekly basis.  Both Patrick and I have changed in ways that are irreversible.  I have more of an understanding of sympathy and caring for others because of Finn.  I want people to be able to look at us and see God's goodness, to know that even in really hard and trying situations that God's the one helping us through it.

I don't want to erase all the things I have learned as his mom, but I wish he didn't have to suffer.  I know every parent wishes they could protect their kids from suffering.  I realize through my own trials that those are the situations that are molding me into a stronger and better person.  I'm definitely a better wife, friend, mother, daughter and sister because of Finn, and I wouldn't change that for anything.  I've learned the importance of a much needed hug and a friend that will just sit and cry with you when you need to not feel so alone.  I've also learned how quickly my tears can turn to a smile seeing our compassionate daughter care and love for her big brother who's sick.  I've also learned to cherish milestones with excitement that can hardly be contained.  There is always good, I truly believe that, you just have to have your eyes and heart open to see it.

The thing is, Dravet Syndrome isn't just affecting our family, it's affecting yours.  I hope it's affecting it in a positive way, by showing you ways you can care for others or ways you can empathize that you never thought you'd encounter.  Just by being our friend and walking along side us through the roller coaster that is life you are affected by Dravet Syndrome.  Here's a link to find out more if you'd like.....http://www.dravetfoundation.org/ This post is being posted this week of all weeks because it is the 4th anniversary or Finn's first grandmal seizure (July 15, 2008).  The day that changed our lives and the way we look at the world.  

I hope that you will consider joining us in supporting the Dravet Syndrome Foundation on October 20, 2012 in Arnold, Missouri.  Participation in the walk/run or a donation of any amount would mean so much to us, we have a modest goal, but we'd love to blow it out of the water.  We realize many of our extended family of friends don't live in Missouri, so even if you aren't able to join us, you can keep supporting Finn by praying for him and for a cure for all those with Dravet Syndrome.  Please visit the walk website (our team for the walk/run is Team Finn) http://www.kintera.org/faf/home/default.asp?ievent=1019220.  Thank you for all the love and support you show to us daily, we are SO LUCKY to have the countless friends and family that surround us.  

lots to catch up on

So we missed blogging in May...we've been busy.

Patrick and I both ran in the Go!St. Louis 1/2 marathon!!!

 We joked around with Ainsley and her new hat that a friend made....we laugh because she and I have the same size head.  Either her's is big or mine is small? hmm.

 Ainsley has had some fun park time while Finn finished up the school year.

 Finn got to go to Grant's Farm on a field trip, and I tagged along:)

 We have been to the Zoo a few times and Ainsley loves the fountains just like I do.

 Patrick and I got to get away for a couple of days to Vegas with some great friends, Ainsley thought she could stow away....

 Relaxing in Vegas at the pool (everyday!)

 Pretending I'm a risk taker, I actually lost on the penny slots....oh well, Patrick won $20.

 Breakfast at The Sugar Factory, yum!

 Ainsley goofing off when we got home.

 The kids have loved the early summer weather, we've been outside as much as possible.

 Made some end of the year gifts for teachers, I've learned I still love crafts.

 Brother-Sister love.....even if it's a love of video games.

 Patrick painted Ainsley's fingernails.....great daddy-daughter bonding time!

 Playdates with friends (outside more:)

 Pretend naps on the picnic blanket in the backyard.

 Swimming for the first time this year, oh so much fun and lots of smiles and giggles.

 Walks with the cousins and grandparents.....a weekly highlight!

So now you are caught up on our busy start to summer....here's looking forward to mild weather and getting outside with the family!!!

Busy Weekend (and yes, i know it's wednesday)

Last week Finn got to go on another field trip to Butterfly House, he actually seemed interested a few times.  There were 2 thousand butterflies flying around from what the guide said.  It was pretty neat.  Notice how excited Finn looks (not).

 Ainsley found sunglasses from a while back in the car (perfect fit).

 Finn chilling as we cruise around to do errands.

 I found my first bloom of the season.  5 out of my 6 rose bushes came back this year....guess I didn't kill them after all.  yay!  The leaves look like evidence that the bugs tried to kill them for me, but they seem to be heartier this year, and hopefully will be colorful all summer:)

 I ran the GO! stl 1/2 marathon this weekend.  It was my second half marathon and it was easier this time.  Mile 10 and 11 kicked my bottom, but it was a great day (overcast and breezy).  I trained with Melinda (middle) and she really kicked it.....she took off the last mile and finished strong! and her friend Kristin (left) ran it with us last minute without even training.....yea, she's crazy, but in shape:) and she finished right along with us.

 Patrick ran it too.....it was his first half marathon (he's run 2 full marathons in the past but decided to do just the half this time:) He finished before us by about 8 minutes....even with a hurt foot and hamstring, he's awesome!!!

 It also rained a bunch, so I went to Target for a few things and found these cute wellies and caved in and bought them....now it's sunny, figures.  Well, I may just be wearing shorts, a tank top and wellies this summer:)

 I also splurged/treated myself to a new pair of running shoes.....my old ones were so old (i trained and ran both half marathons in them) that i was actually rubbing off the sole (not the treads, they were totally gone, but the sole of the shoe).....the guy at the store said i was lucky i hadn't hurt myself.....ooops.

 Oh, and there was also some pouty Risky Business going on.

 And Finn was under the weather, so like Ainsley, he used daddy's head as a pillow.

Busy weekend, but fun overall......If I find any Easter pictures I'll post them later, I forgot the memory card when I was taking photos....poo.