The Christmas Letter That Felt Wrong To Send.

Read this only if you want to! That way, I feel I sent one out, but gave you the option of not clicking on the link. :)

Our 2011.

We started out the year with surgery for John. They found a tumor in his spine, and some spots in his brain as well. After a seven hour surgery, that was supposed to only be six, they found that they could not remove the tumor, as it was wrapped around his spinal cord. They took a biopsy...and after a lot of consulting (he had a team of like, 20 doctors reviewing his case) they decided that it was neurosarcoidosis. This is something that will be with him forever. When things flare up, high doses of prednisone (a steroid) will improve symptoms. However, later on this year, after he had gone off prednisone, symptoms started returning, even though he was on methotrexate and plaquinil. His body is resisting treatment, and he is back on the steroids now. We are now trying to give him his methotrexate by injection instead of orally, in the hopes that his body absorbs it better this way, and hopefully, we can get rid of the steroids entirely. This is a disease that can actually go into remission, but so far, I don't feel that it has done that. He struggles to walk, and his lower extremities are comprimised. His upper body remains strong. We visit Iowa City a lot...but we just don't get the answers we want. Please, pray for him if you get the chance. 43 is much too young to feel this damned old.

JT is such an amazing young man. He stays on the honor roll, he plays football, which he loves. He had some injuries to his knee this year that kept him out of some games, but still managed to letter. I am so proud of him! He has a lot of wonderful friends that I have gotten to know, and the kid is just kind of amazing. He's compassionate, hard working...he's the apple of his mommy's eye...seriously. I couldn't ask for a better teenager. I wish that you could see him with Levi. He just loves that kid with everything he has...and that in itself is simply outstanding. Levi will be lost when JT is old enough for college....I can't even register the fact that he will be a senior next year. Why is it that you always have to find out the hard way that people are right when they say..."time goes fast..." Ugh.

Benny cracks me up...daily. He is such a witty little guy...and I am so proud of everything he has to overcome. This year, we found out that the arthritis medicine that he takes isn't enough. We had to add Humira injections. The crappy thing is the side effects. I am increasing his risk of like, six different cancers and auto immune disease. I struggled with the decision to put him on this medicine, but it really wasn't a choice anymore. His right knee was three times it's usual size...due to arthritis. We also found out that his eyes are not good enough for him to be able to drive. However, he bought a truck anyway. :) John's work was getting rid of the work truck, and sold it to Benny for $2. He named it Yamanashi and makes JT drive him around in it. It's hilarious. He is over the moon about it.

Levi is doing pretty well. He hates school...he hates talking about school...he hates having conversations, and well, if we would all just leave him the hell alone, he'd be elated. He lets us know when he wants to be tickled or teased...and when he wants to be left alone. He is actually doing awesome in school, but his classes are modified. We are so lucky to have people like Lori Soloviyov, Holly Herrick, and Jered Johnston in his life. They help me so much...and Levi honestly loves them. He is a blessing. He teaches me so much everyday...I am so lucky to have this little guy in my life...his laugh is completely contagious.

Me...I guess that brings me to ME...I am doing alright. I have a full daycare including a set of twins that are 3 months old...and another 11 month old baby...along with all the others, that is a lot of bottle feeding and rocking...but honestly, I love it. I don't get a lot done in a day, but at the end of the day, I feel like I have made a difference!! I TRY to keep up with housework...but fail daily. Sometimes I catch up, but it only lasts an hour or two. I struggle sometimes...with why we have been dealt the hand we've been dealt....but I have an amazing family...and very strong friends who hold me up when I feel like I can't anymore...could not be more thankful for that.

See? This sounds like a freakin' medical journal...and I couldn't put that on happy christmas paper...:)

Honestly, I am blessed. There are so many other things that could have happened...we have life ALTERING issues, but not life THREATENING...we are fine, and for the most part, happy!

I hope this letter finds everyone who reads it, happy, healthy and full of love.

Hoping for a blessed 2012...for all of us!!

Seventeen

Seventeen years ago, September 24, 1994, something happened that changed my life.

I became a mother.

I was so scared...would I know what to do...would I do what was right...would I be what this beautiful, 9 lb 3 oz boy would need? Would I know what to say at the right time?

Well, I don't always know what to do...but I know I do my best. I don't always know what to say, but I speak from the heart. I know that when he was born, suddenly, I didn't think about what I needed anymore, but just what he needed...and I felt a love like I had never known. I would have done anything to protect him...and still would.

John Thomas Greenfield is a blessing. This child changed me forever, and I remember holding him, rocking him, singing to him, worrying when he was sick, laughing when he did something funny, rejoicing in his milestones, holding his hand, and knowing my entire life had led up to his existence. I can never express what this day meant to me...the day he came into my life.

As he has gotten older, he has become a very remarkable young man. He is so smart...way smarter than he should be with me for a mother...(good thing he got his brain from his daddy) He is loving, compassionate, caring, considerate, and he always knows when I need a hug. He is so amazing, has lots of friends, and is such a good big brother to Ben and Levi. He pushes Ben to try harder, and he loves Levi unconditionally, and accepts him for who he is with love in his heart. He has had to deal with his share of hurdles (especially his eyes) but always seems to come out on top. I admire him as a young man...he sees things as they are and makes the best of situations...I could not be prouder.

Love you, JT. Happy Birthday...you can never understand what you have brought into my life.

The Week From Hell.

It all started last Saturday.

I woke up feeling h.o.r.r.i.b.l.e. I mean, that awful, hurts-to-wear-clothes-your-body-hurts- feeling...along with an insane sore throat, and a sinus infection I am positive came straight from Satan himself. Every time I tried to get up the room would spin, and I would have to sit back down. I had a fever, so there was the hot/cold/hot/cold...blankets on/blankets off issue going on, and I could not get comfortable no matter what I did. The only thing that provided any relief was to soak in a nice hot bath, which I did about every four hours. I think I might have been the cleanest person in town. Sunday brought no change, although I did manage to get some laundry done that day instead of just laying on the couch.

By Sunday night, I was fearing that Monday may not bring any change, and that I would have to take the day off. Ohhh how I hate doing that to my daycare parents!! The guilt!! But, alas, I did have to take that day off. After I felt I had contacted everyone, I went back to bed, and finally after a very restless night, I managed to fall asleep. I had no idea how much time had passed, when I was awaken by a little voice saying, "Kimmie!! Kimmie!!" OH SHIT!! I forgot that Luke and Stella were staying with Grandma!! I didn't call Grandma!!! I still feel just awful about that...but my beautiful Glenda was willing to fill in for me, so Grandma was able to take the kids over there!!

I wasn't able to go back to sleep, so I flipped on the TV. On a side note, daytime TV is so lame, there just aren't even words. Eventually that day, I did get to the doctor. She mentioned that my stress level is out of control (what?? are you kidding?? this is a huge surprise!) and I need to sleep better and also that the more stressed I get, the more sick I'm going to get. After giving me a prescription for a nice antibiotic and a sleep aide, I was on my way.

As it ended up, I think my families were a little scared to come back on Tuesday. They all decided to give me another day, which as it ended up, I really needed.

Then came Wednesday. Pretty uneventful, I was feeling much better. I worked a normal work day, took Levi to therapy, and rushed back to go to "God School" as Titus calls it...and see the entire congregation standing in front of the church...yeah, no one unlocked the door!! And here I am with the key and I didn't pull in the parking lot until 6:31!! I don't think anyone was TOO mad, but I felt horrible about that!! But other than that, Wednesday just felt like Wednesday.

Then came Thursday. Only three kids showed up as I had to take off with John for Iowa City. We had to leave at about 10, and Grandma Judy graciously watched the daycare kids until noon. Ben had an eye appointment at 9:40 in Ames, (routine six month appt) and so Grandpa took him to his appointment and John and I headed out.

John had to have a CT scan on his chest, and 3 back-to-back MRI's. We got all of this done on Thursday. We got a hotel room and spent the night because we had Dr. appointments on Friday. Here is what we now know.

We have baffled the entire staff at the U of I Hospitals and Clinics. John's symptoms are consistant with both sarcoidosis and lymphoma. They have been, unable even to this point, to pinpoint one or the other definately. With more than twenty doctors reviewing our case, nothing is for sure, but we know this much. He is responding to treatment. The MRI's are showing that the areas of concern on his brain are all but gone. There were smaller lesions all the way up his entire spine, and those are gone now. The biggest area of concern with the most swelling, his lower spine, shows the some of the swelling is going down. This is all really good news. However, we just don't have that...you know, 'answer' that we want. Both sarcoidosis and lymphoma would respond to this same treatment. I don't like the 'cancer' thing hovering over our heads like this, but as of now, it looks like it's something that we are just going to have to live with. We will be going back to Iowa City on April 5th. The doctors are going to continue to keep a very close eye on John and do further testing and when it becomes necessary.

On Thursday, after all of his tests, John and I were doing a little shopping, him at Scheels, me at Target, and I get a phone call from Ben. He sounded really upset. He proceeds to tell me that at the eye doctor appointment, they realized that he has fluid behind his left eye. (this could cause blindness...it has already made the vision in his left eye much worse) On Monday, we have to go to Dr. Suh and he has to take fluid out from behind his eye by sticking a huge needle in the side of his head. He is terrified, and I am stuck 160 miles from him. I tried to calm him down as best I could, then called my Dad...then Glenda. They calmed ME down. Then it was back to the hotel, and finally the hot tub. It felt amazing, and definately melted away some of the tension! I slept pretty well that night, with the help of the hot tub, and ambien!!

Friday, we got up and went to his doctor appoinments, and then it was homeward bound. Ben and I got some snuggle time in, and I think we both felt a lot better.

So, now we just have to get through Monday!! Pray for Ben, and for this proceedure to not be nearly as awful as it sounds. I don't want to pass out at the eye doctor...*sigh*

Thanks for all the calls, concern and love we get from all of you. I couldn't get through any of this without my amazing support system!! Just remember to always be so thankful for all of the blessings in your life...and never to take them for granted. You don't know when they can be taken from you..

Valentine's Day Insight...

I don't know that I will ever fully understand Valentine's Day. It is supposed to be a day to let your sweetheart know how much you love them, so why do so many of the gifts in which you might give to your significant other make them either fat, drunk or smell better? I mean what are we trying to say here, and why are we so honored to recieve these gifts?? Take candy, for example. You get a box of chocolates, which of course, you are going to have gone within a day or two only to put on a few more pounds you will eventually have to work like hell to shed, right? What your significant other is actually saying, is..."I love you. Eat this candy I give to you with love that you will become the size of a house so no one else will ever want you and I won't have to worry about you cheating on me." Or, how about wine, for instance. What your loved one might be telling you is, 'here, drink this wine, and then I at least have a chance of sleeping with you tonight, or better yet, you'll become comatose and we won't have to talk at all!!' Perfume? "You stink. Try this." Flowers, 'at least there will be SOMETHING pretty in the house, seeing as how it isn't you..."

And then of course, are the single ladies who are sad because they don't have a "valentine" to give them these offensive gifts! You girls should be forming some sort of sisterhood and partying your asses off for being smarter than a lot of us!! Trust me, there are negative messages being sent all over the world on this holiday and you are lucky to not be a part of it!

I'm not trying to completely dismiss this day, I'm sure that it is very important to a lot of people, it just seems like maybe I'm looking a little too far into this entire thing..maybe it is insanely romantic, and since I've been married for eighteen years, it's just kind of lost significance over time...for me, anyway.

However, my husband has made sure that I will be both fat and drunk by February 15th. I love you too, baby.

Happy Valentine's Day, everybody!!

Just a Sunday Night

Super Bowl Sunday has never really meant much to me, but tonight, we had our own little party! It was so fun having Grandpa, Jacob and Melinda over to watch the game! We had a lot of really fattening snacks, and even Levi got into the action, even though he kept yelling, "Go Vikings!!" He decided a couple of times that he loved football and was laughing at the screen and clapping! It was so cute. About the third quarter he was done, so we came downstairs to do some drawing and 'label making'. It was awesome because he was in such a great mood!

The funniest thing of the night, by far, was when Ben and Melinda were snuggling on the couch, and Levi wedged himself right in between them and started 'flirting' with Melinda! Poor girl, I'm not sure she knew what to think but it was completely adorable. Levi just loves girls! I wonder if it will always be like that when one of the other two boys bring home a date...Levi will try to 'steal' the girl!! So funny.

We have so much to celebrate right now. John's diagnosis, though not really 'good', is so much better than it could have been, and hopefully with the right treatment, things will get back to normal! It has been such a long hard road for all of us! You really start to realize just what you have in this life. I have a wonderful family, not just my immediate family, but extended as well, and FRIENDS...I think we found out just how many friends we really have! It was humbling, and totally awesome. Thank you to everyone, for everything. There are no words to express how much you have all meant to us, the prayers, the cards, and just the general concern. So many of you were so willing to do whatever we needed, and that was just so incredibly amazing.

I am blessed, there is no doubt about it. I am so lucky, and I wish everyone could be as lucky and as blessed as I am.

Keep the prayers coming! We aren't done with you yet!!

Love you all...

~Kimmie

Diagnosis Sarcoidosis

If you would like to look this up, you can go to www.stopsarcoidosis.com . It gives a nice overview of what it is. It's not good, but it's definately better than anything we were thinking!! So, no radiation, no chemo. (we don't think anyway!!) We will be going to see the rheumatologist in Iowa City on Monday, and hopefully we come out of there with a plan of action and some good drugs!!! John's mom was diagnosed with this a couple of years ago. They treated her with prednesolone (not sure I spelled that right) but it's a steroid, and should help take down all the swelling around the base of his spine, hopefully giving him back use of the lower half of his body!! Like I said, this isn't ideal by any means, and it's something you have for the rest of your life, so it's not like I feel like throwing any parties, but this is so much better than cancer!!!! I have been so scared!!

Now, about the other thing, yesterday John's leg swelled up pretty huge, and the doctor is afraid it's a blood clot, so he is on his way to Webster City to have an ultrasound, and we may be looking at a night in the hospital, we will have to see. If you have a daycare kid here, I"m going to be calling for an early pick up so I can get over there!! Also, I will be off Monday for the appointment in Iowa City.

I truly believe that all the prayers have helped and continue to help. If there is ever anything you ever need me to pray for, let me know, I owe many people many prayers!

Our lives just may be a little closer to normal someday!!!!! WOOHOOO!!!!

FrUsTrAtEd

I have to admit, today hasn't been a positive one. We were supposed to have the results of John's biopsy by now, and John ended up calling Iowa City only to spend time on the phone with several people who knew absolutely nothing even with his chart sitting right in front of them. I am trying so hard to keep looking on the 'bright side' of everything, but it wasn't coming so easily today. I know these things are petty, but my van also decided to expire on me, and our computer got a virus that is rather severe. It's at the computer hospital now. I also got bleach on my favorite pink shirt, and then Stella grabbed hold tight and broke my necklace. Taryn pooped through her clothes in the morning, and Stella did it in the afternoon. I didn't get Stella's bottle top screwed on right and it spilled all over me and her, and I tripped going up the stairs and smashed my shin. I mean, ever had days like that?? I have them all the time but maybe today I just wasn't in the mood. I am tired of waiting for the news of the biopsy, I am tired of poor John feeling like hell, I'm tired of his legs cramping up so bad he screams in the middle of the night and there is nothing I can do, and I'm tired of always feeling like I'm never quite good enough.

So, what do you do when you feel like this? A few things. First, I make sure to play memory with the daycare kids because I always win. Then, at lunch I feed them chocolate pudding so I can laugh at their little chocolate beards. I put them all to bed for nap except for one snuggly one, which I will rock until they fall alseep, and so does my butt...then I lay them down. Then we play 'who's mom will come first' and when I tell them I think MY mommy will come first, they think it is the most hilarious thing that my mother will come and take me home...but if they only knew just how much my mommy still took care of me, I doubt they would find it that funny!! It's so true!!

I made a good supper, went to the basketball game, got to spend time with the boys' friends...HI JACOB!! and hang out with John. Then, I came home, decided to open the bottle of wine from Kellie...(NICE CHOICE) and decided to blog a little.

You know, I think I might be feeling a little better...:)

Please pray for me to have patience and positivity!! I am trying sooo hard!!!

<3

You realize you are more tired than you thought when....

Yeah, so yesterday all I wanted to do was shower!! You feel pretty scuzzy when you are just laying around. So JT and Ben, John and Judy were going to come visit us, and I figured I could slip away and go over to John's sister's house to grab a shower...seems very simple doesn't it? Leave it to me to make it complicated!!



I go to leave the parking ramp, and somehow take a wrong turn and end up with all the service vechicles and unable to just drive out. I make kind of a 'three point turn' taking out two cones. Embarrassed, and hoping no one saw, I sheepishly creep out of that area and head for the exit. I go to pay the lady, drop my money on the ground, and non-gracefully I slide out of the truck to pick up the money slamming my head into the door on the way up. Rubbing my head and feeling stupid tears begin to form, I hand the lady my money, again...and I take off for Dawn's.



It is so nice that she just lives a little ways east of Iowa City!! However, I decided to go west on the interstate instead of east. So, once I realized (almost instantly, but too late) what I had done, I had to get off at the next exit and turn around. After one illegal u-turn that I totally got away with, I was on my way, in the right direction. Shower, here I come!!!!



Now, I thought I had listened to Dawn when she told me how to get to her house, but ended up at a funeral home, and had to sit there and wait for her to come get me so I could follow her back to her house...seriously!! KIM!! HELLO!!



So I finally make it to Dawns, and I can't get John's passenger side truck door open, but I finally managed that...



Then, shortly after, I sank into a hot bubbly whirlpool tub...and it was great until all the sudden I think perhaps it was a little TOO hot because I started getting dizzy...haha!! I ended up taking three 'breaks', getting in, getting out, before I finally thought I was beginning to feel human. As I emerged from the bathroom, my nephew Blaine takes one look at me and screams and heads to the other room. Okay, so I was the color of Sebastian, the singing crab from The Little Mermaid...but I didn't think it was THAT bad til I caught a glimpse of myself...bwahahaha!! Nice...



Anyway, I let my skin go back to it's normal color before I put on my make up and did my hair...I headed out with instructions as to how to get back to the interstate...four wrong turns later, I was back on 80 on my way to the hospital...



Driving like some old blue haired woman who should have lost her license sometime in the 80's...I made my way back to Iowa City only to find that the friends I so desperately wanted to see had come and gone...not surprisingly...but still, just my luck!!

Finally at about 6pm, I was pretty sure I felt a sore throat coming on, so I took some NyQuil and knocked my ass out early.

I did get quite a bit of sleep, as well as you can do in a broken recliner chair...and was feeling a lot better this morning. We just had two visitors today, and I think that was actually a good thing. John's been getting up a lot today and is doing well, but his gown is flapping in the breeze leaving virtually nothing to the imagination!!

We are doing really well! The nurses are really impressed with how well he is getting up and getting around. He is using a walker which I hope we get to take home with us, but I have a feeling my big strong man will try to get out of it if he can. Our phones have been pretty quiet today, too, so we've been doing some dozing which has felt really good.

Thanks so much for all the emails and messages...it is so nice to get on here and kill time while John is napping...or as he is watching the game right now which I could give a shit less about...teehee. He is missing his big TV at home for the game. lol Feel free to email or message me or text and if I can I will get back to you. My phone doesn't always work in the hospital...but if I can there are places I can slip away when the opportunity presents itself, but I tend to not stray far from John just in case he needs me for something.

Keep the faith, and remember to hug your families, and turn a blind eye to those things that seem sooo annoying...one day that annoying stuff may be the stuff you miss the most!!

Love to all!

~Kimmie

Update

Okay everyone, here is what we know thus far.

The tumor is inoperable. The good cells and the bad cells are intertwined, and cannot be separated. What this means is that we will now have to look into radiation or chemotherapy to shrink the tumor. They did get a biopsy, but we will not have the results from that for ten to fourteen days. Using radiation is still used even if it isn't cancer. Optimistic little me still says it's not. :) This isn't exactly the news we wanted, but that doesn't make it bad news. I'm just calling it one step closer to the actual answer. One step closer to getting John back to his old self!!

Of course, prayers are still wanted, needed and appreciated!!

I hate hospitals. The sounds, the smells, the rules...I so appreciate being home when I'm stuck in a place like this. Usually I complain about being home too much, but right now I'd give anything to be there!! I want to hug my kids and tell them that everything is going to be fine. It is, you know. :) It has to be!!

Again, just take a minute to appreciate all that you have. Give thanks for all your blessings. I will keep in touch..

Kimmie

Life's Alterations

I know that John really doesn't want me to blog about this, but as so many people are asking, I just want to give the information. Plus, John doesn't read my blog. Teehee. (Be quiet, Judy!)

Our family has most recently been hit with a little more 'life altering' news. John has a tumor in his spine. We will be going for surgery in Iowa City on January 20th. It is a five hour surgery, and he will spend five (or so) days in the hospital. They have to biopsy the tumor. That, in a nutshell is all that we know.

So many of our amazing friends and family have been asking what they can do to help. I promise, if I come up with a job for you, I will tell you what it is, but for right now, the biggest thing any of you can do is pray for us. I know, it seems small...but it is bigger than any one of us. The power of prayer is amazing. I've seen it first hand many, many times, and I believe in it. We are truly, truly blessed to live in this amazing community, where so many people care and have offered help in so many ways. People bitch about small towns, but I say there is no other place I would want to be. A small town is like a family. Sure, we may all know too much about each other, and we may want to rip each other's heads off sometimes, but when things get rough, we rally. John and I have been truly humbled by the love we have been shown recently. Thank you, everyone, for caring and helping.

I have had a lot of people say, "Kim!! How much more can your famly handle??" I have thought a lot about this. JT and Ben with Stickler's Syndrome, Ben with JRA and spondylolythesis, JT near legally blind, Benny actually legally blind, Levi with Autism, and now John with a tumor. It is a lot for any one family. But the cool thing is we have hung tight AS a family. We love each other unconditionally, no matter what the problem. We understand each other. We can talk about the hard stuff and deal with it, TOGETHER. I don't know, I mean, I'm not diggin' the issues thrown at us, but talk about making you realize the strength of your family! Do you know that a lot of families faced with Autism alone crumble under the pressure?? It's true! There have been studies!! But not us. It would be easy to be really mad at God right now, but I think he's trying to prove to us what we have in each other. I think he's trying to step in and show us what we have, and to never take it for granted. And I think that is a pretty cool message. Intense, actually. Well, God, you nailed it. Message recieved! Now, let's stop this particular 'test' and give us an "A" so we can move on to live a long happy life together!!

If you read this blog today, please comment or message me. I need to hear from my friends! My friends have been such a huge part of my life, and I love making you all laugh and sharing silly stuff!! Laughter, well, it's coming a little slower these days, but I know hearing from you will help get my spirits back where they need to be in order to get through this new 'adventure' in our lives. Even if we barely know each other, give me a shout out. Also, hug your families. Each and every member. Make sure they know how much they mean to you. Nothing is promised.

Also, if you are a buddy of Johns and are concerned about him, I want you to give him a call. Just let him know that you are thinking of him...his cell is 515.310.0174. He works from 8-5 so maybe not then, but please just let him know that you care. He needs everyone in his corner in a big way right now. The more love coming his way, the more power he will have to get through this operation and get on his way to recovery.

If you just want to check on him at any time, my cell is 515.310.0271. During the day I do better with texts, but I will be glad to keep you all updated and give you any information that I have.

Thank you all, for your support and love. I hope I can always return it to you whenever you need it! Keep the prayers coming. We feel them.