Good, Great, AWESOME news!

So, since we last posted we had gotten some bad news that the type of tumor on my appendix was the same as the one on my ovary....so I was given a new diagnosis of "pseudomyxoma peritonei".  it's really rare and therefore not a lot of information out there about it.  Pretty much the tumor on my appendix created this mucus that broke through and spilled into my abdominal cavity and spread the cancer cells.  But, on a good note it's normally very slow growing and doesn't normally spread through they lymph system or blood stream.  so it should be somewhat contained, hence the tumor on my left ovary.  we've been doing more tests and more waiting and praying for the past week and a half, but we have some good news. here's the place we are in now.....

SO, last night my aunt was over with my cousin and she said my uncle (who's a colon/rectal surgeon-i think i've mentioned that before) reviewed my case with his partner and they thought my body looked clear of cancer cells.  I talked with my doctor this morning and she said that my case has been reviewed by the pathologists at Barnes Hospital here in STL and they agree that the pathology of the tumors they took out look like "low-grade pseudomyxoma" and that at this point there are no growths that would lead them to believe that I need another surgery right now.  (these cells can lie dormant, so unless they plant themselves on another organ and grow I shouldn't have any problems) She said it would be in my best interest to wait and just watch closely.  This means that I'll go in every year for a CT/MRI to scan my body for new tumors....and if any do show up, we'll deal with them on a case by case basis.  She said that the invasive surgery that goes with this type of cancer would not be in my best interest right now.  I'm so relieved, I'm having a hard time letting it sink in that life gets to go back to normal.  Normal- I guess our definition has changed once again, but I'm not slapping the had that tells me I don't have to be cut open again anytime soon.

Also, to drive home the point my aunt emailed me this morning with some cool news that my uncle Jim was "at the American College of Surgeons in Chicago right now.  And he just finished monitoring a panel of 4 experts on pseudo-carcenoma.  At the end he presented Katie's case to them and asked what they would do.  They all agreed that they would just monitor her.  So she has now had 5 experts hear her case and they are all in agreement on the course of action."  

I'm just so glad that there is some certainty to the course of "action" for me since this is all so rare.  Thank you all for praying for our family and just being there for us in all this yucky cancer talk. If you see me skipping down the side of the road with a beaming smile like I just discovered the tripple rainbow, just honk and i'll wave-no need to call the police, i'm just celebrating:)  

(ironically, this pic was taken just after my first surgery and i don't think we knew any bad news yet...but i'm wearing a "relay for life" t-shirt...hmmm.)

Good, no GREAT, news!

I just got off the phone with the nurse at the drs office and my small bowel looks clear and my PET scan came back with NO signs if metastatic cancer!!!! I stated crying before I even hung up the phone, but obviously good tears of relief! I still have one more test next week but at this point we aren't expecting to see anything, just get more reassurance that it's gone.

Thank you with all my heart for praying for me and my family, I'm lucky to have so many people that really care about me (and my family). Prayers of Praise to God today.

I'll still be posting about my test next week and surgery on the 11th, just FYI.


- Posted using BlogPress from my iPhone

Quick update

So quickly before the end of the day... Had my PET scan this AM and I am still so impressed with Mercy Hospital and their wonderful staff. Everyone today was so nice. (maybe it was bc it was the cancer center and they have a sensitivity chip-ie. compassion others are missing, but so far in all this, most of the hospital and drs staff have been really nice)

I got to the cancer center early and they drew a little more blood to check my blood sugar and then injected me with some radioactive sugar that would travel through my system and highlight any cancer cells on the full body scan. It was only a little stick and then I got to sit and read for 45 minutes while it ran through my system. I was a little bummed to find out I didn't get any spiderman-like side effects, I mean he was bitten by a radioactive spider right? Well radioactive shots don't work the same way-I feel let down by modern medicine, although I feel like my kids would be weirded out if I shot spiderwebs at them to keep them sitting at the table during mealtimes.

I digress. So I still don't have my test results from the small bowel series Wednesday, but I'm supposed to hear something on that test, and the scan from today, before the weekend. I will post once we know something. Also, I have my capsule endoscopy (where I swallow a camera) Tuesday. Another day of liquid diet, but I'll be glad to get it done and have the results. I'm relieved they are getting me in so quickly for all these tests, but it's still agonizing waiting for the results. Thanks for keeping the prayers going-it's keeping my spirits up.


- Posted using BlogPress from my iPhone

Barium, not your regular smoothie flavor

So, I went for my small bowel series this morning. It's pretty much consisted of me drinking two large cups of yucky white, bitter fluid then a ton of X-rays of my small bowel, and being pushed on my abdomen with a big paddle with a rubber ball stuck into it. My digestive system wasn't really cooperating (the barium took a long time to work its way around) so I was there for 3 hours, but I had a good book so I tried to just enjoy getting to read without kids climbing on me:)



I won't have the results until tomorrow at the earliest. We are still hoping for the best. In the meantime, barring any bad news, the docs have scheduled me to have my appendix out on Tuesday, September 11th. So I'll have another full week to heal from my first surgery before I'm out of commission again for a little bit.

We will probably be setting up a short care calendar for meals during the recovery of the next surgery later this week or early next week through our church. Our needs won't be huge, but check back for that info, I'll try to post it once we have test results and know for sure what we are headed into. Again, thanks for all the prayers, texts and emails-they are very uplifting and keeping me in a positive place.

- Posted using BlogPress from my iPhone

Two down, three to go

So, I'm happy to report we have good news. This morning we got encouraging news. After what was a seriously hellish afternoon and night of "prepping my bowels" yesterday, it was a pretty easy morning. My father-in-law drove me to Mercy bright and early and once I'd been checked in they started my IV (which was the most painful thing of the day-I have the blown vein to prove it), but they gave me a nice warm blanket and wheeled me in to meet the anesthesiologist and the Drs performing my colonoscopy and upper endoscopy. They were all so nice and I liked them even better once I woke from my nice deep sedation feeling super loopy and telling everyone I was praying for them-yes leave it to me to witness while doped up:) Both of my Drs came by to tell me they didn't find anything alarming and that I looked clean. NO huge tumors or scary spots, but my appendix did look suspicious and there was a "thickening"-so pretty much it sounds like I'm going to have my appendix out barring any major results from the next round of tests. My upper GI Dr did add on another test (a capsule endoscopy-where I swallow a pill and they teach it through my small intestine, he said its painless).

Afterward I came home feeling pretty good and ate something and laid down for a few hours. I feel pretty good, still a little loopy-which may show in the writing. I just want to thank you all for the prayers,emails, food, and flowers! I think Patrick and I are taking a deep breath-good news is nice. Keep the prayers coming, I'm headed in early in the AM for the original small bowel series tests.


- Posted using BlogPress from my iPhone

The week of tests, soon to begin

So we got word today that my other tests are thankfully going to be next week as well. So the breakdown is Tuesday:colonoscopy/upper endoscopy, Wednesday: small bowel series, Thursday: PET scan. So a full week, but I'll be glad to have it all done and be praying for everything to come out clean. Saw my doctor today and he said the CT scan came back pretty normal, but there is still some question revolving around my appendix. We hope to sort that out with these tests. Just having all of it scheduled should help us sleep a little better this weekend.

Also, side note, Finn has been a little under the weather today and has a seizure this evening bc of that. Please pray he rebounds quickly and gets healthy quickly. It would be reassuring if he could be well enough to be at schools during my tests next week. It's hard facing all of these tests knowing he isn't feeling well and I can't be here for him. We are coordinating babysitting, but I will send out a request if we need help. Thanks for all your continued prayers.


- Posted using BlogPress from my iPhone

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:)

- Posted using BlogPress from my iPhone

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:)


- Posted using BlogPress from my iPhone

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


- Posted using BlogPress from my iPhone

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.

Bring it on

Last night Patrick took me to see a great cheerleading musical "Bring It On". It was really good. Not the same as the movie for those of you who think you know what happens. They had professional cheerleaders in the chorus so the stunts were great! I was jealous if the height of the baskets! And the 3 leads had amazing voices and I think the main lead was from STL, if I'm not mistaken. She did a great job. If you are a girl between the ages if 8 and 102 and have any mild interest in dance or cheer you'd love it. And my husband is the greatest bc he agreed to take me before he knew it was the season opener for the Cardinals, I might be paying for this later when I'm at home with two crazy kids while he goes to watch the games at Buffalo Wild Wings. But totally worth it.

And just for good measure a cute pic of Ainsley on the potty. Training is going awesome!!!


- Posted using BlogPress from my iPhone

Finn's feature at school

So at Finn's school there is a week in the spring where they celebrate the diversity of special needs students. Finn was invited to participate this year and here's his poster that will be displayed in the hallway for everyone to adore:)

And one of our amazingly talented and creative friends-Erik came up with this.....Marky Mark (aka Mark Walberg for you youngsters) watch out!


- Posted using BlogPress from my iPhone

Happy Monday.

With purse and borrowed helmet we are ready to take on the week:)

- Posted using BlogPress from my iPhone

Potty training

We are starting potty training with Ainsley. I always thought that meant your kid would be potty trained in 3 days. I'm going more for the Interest in the potty then for results. Ainsley seems to just like being naked and getting to watch movies.

I bought her Dora and tinkerbell undies today and she's super proud of them. After lunch I had her sit on the potty before "quiet time" and she refused to go upstairs until she went "peepee in da potty" and low and behold-she actually pooped in the potty! I was so surprised and excited. We danced around it smiling together-weird?yes. But our little girl is getting old fast.


Here's hoping we quickly advance to using the big potty, I'm not such a fan of cleaning the little one.

- Posted using BlogPress from my iPhone