So, so so so so so.

Yesterday we met with Olivia's geneticist to discuss the latest MRI and Olivia's overall health. 

So, good news? Not really. 

Better-than-we-were-thinking news? Sort of.

Anyway, let's get to the ugly. 

Olivia has a "new to our knowledge" tumor in her left ear/neck area. The geneticist and neuro-radiologist took time today to compare a number of Olivia's past MRI scans. Apparently, this tumor has been there since 2010. 

Thinking back to 2010, we (parents and doctors) were focused on how Olivia's skull fracture was healing. The scans at the time of her accident also found the optic pathway tumors, and then it looked like they were causing vision loss and she may need to start chemo (Details can be found in the links on Olivia's NF1 page).

So no one was paying attention to her neck. 

What does this mean? 

So, this news is good in that the tumor's growth has been occurring over the last 2 years instead of over the last 6 months. There is evidence the left neck tumor is going through an active growth phase - more visible asymmetry of her face, chewing with mouth open more than usual, complaining about ear pain when she wears headphones - but it's also possible Olivia is going through an active growth phase as well. 

So, the plan. The plan. The plan. The plan.

We have her Nov. 2012 MRI which shows about 90-95% of the tumor. Olivia will have another MRI in 3 months. She will have a third MRI 3 months later. They will examine the volumetric growth rate of the 3 scans. If the growth rate is less than 20%, we leave the tumor alone. If it's more than 20%, then it's time for action. 

The 3 possible options with NF tumors- 

First option- leave it alone if it's not causing problems or growing faster than Olivia, such as the ones on Olivia's optic nerves- no vision loss, stable size, no action. This is the best case scenario. 

Second option- surgery to de-bulk the tumor, which is the last resort treatment. It's unlikely surgery would get all of the tumor and the tumor is growing on facial nerves which could mean loss of sensation of her face.

Third option, chemo to slow the growth. 

So, so so so so so, we wait. 

Last night I was talking all this over with my mom and she gave me a pep talk (which I needed, moms are good at that), reminding me of all the good things-

Olivia's optic pathway tumors are stable. The tumor above her right eye is stable. The tumor inside her brain is shrinking- the MRI report states "treatment is effective." What treatment? There is no treatment. Only a little miracle easily overshadowed by the bigger worries. 

Yesterday, the doctor was impressed with her happy attitude, her coordination, her ability to sit next to the edge of the table without falling off, her ability to contentedly play while we talked, her smiling and smirking semi-cooperation (Olivia can you raise your eyebrows? She replies with a smile so big it crinkles her whole face, "No" showing the doctor exactly what he is trying to see- that there isn't any face paralysis). 

Olivia is happy. Yes, some things are harder for her, but she keeps going. She is a unique and wonderful part of our family, and we love her so dearly. 

2 year old ham

Thank you Sophie for your un-cooperation. It was fun!

Dear Santa

Because we couldn't possibly have a nice, peaceful evening setting up the Christmas tree!!

HAHAHAHAHAHAHAHAHAHAHHAHAHAHA!

Hey!

Christmas decorations - check!

Turkey Run

My pictures from my turkey day run are up. 

I wish I didn't look like I was dying when I'm running. 

I like to imagine I appear calm and collected, contemplating some deep thought of the cosmic universe while smoothly running down the road. 

But I know I'm red-faced, huffing and puffing, and sweaty, and I forgot to put up my headband so it's hanging around my neck, and I'm running wobbly because my hip still hurts like HECK, and my thoughts tend to be "WHAT WAS I THINKING?!" 

But I do like it. I miss running. Walking on the treadmill stinks. 

Zazoosh Utah Human Race

You can search by my bib # 8312 if the link doesn't work. 

Thanksgiving Weekend

We had a wonderful, relaxing Thanksgiving Weekend. We are so grateful for all of our many blessings, and our wonderful family and friends who love and support us. 

We are so incredibly grateful!

My 3 little helpers - My girls love peeling carrots and Dade keeps the floor cleaned up. 

 

Thanksgiving Day 5k - my pelvis is still giving me trouble, but I couldn't resist running and had a great time anyways.

Project time - making paracord bracelets

I showed my girls a veggie turkey on facebook and they insisted we needed to make our own. It was fun :)

Veggie Art 

Being walked by the dog

Tormenting the dog :)

These girls spent hours playing with these cups. They had so much fun stacking them in different combinations and knocking them down. 

Homeschool - Late Fall/Early Winter 2012

Simplify! Simplify! Simplify!

This is the message I keep getting from Heavenly Father about our homeschool. But there are so so many wonderful opportunities and fun things I want to do so I start to wander away from the plan. Then I feel overwhelmed and start to panic. Then I start praying about what to do. And the message comes again, loud and clear:  

Simplify! Simplify! Simplify! 

I'm working on it. Keep drilling it in my head. I'll get it. 

So while we are still using many of the same resources, we have simplified the assignments. I was also able to combine poetry, grammar, and artist study into one resource when a friend told me about the fabulous language arts books of Queen Homeschool. 

We are still involved with My Tech High and the Insight Liberal Arts Academy (Southwest Commonwealth), but we are scaling back on how much time we spend away from home. Well, we're trying. 

Devotional
Book of Mormon
The 21 Rules of this House
Prudence & The Millers

PE
Some friends of ours do Taekwondo and they recently gave all 4 older kids a free 30-day trial coupon, so we're trying it out in December. Olivia & Jolie will also have swim lessons on Saturdays. (We have found that when Olivia is not involved in consistent physical activity 2 or 3 times a week, she becomes easily tired out and will often lay down to rest- this is a due to her NF1.)

Austin
Math - ALEKS and Kahn Academy videos 
Computer Literacy - My Tech High 
Intro to Robotics - My Tech High 
Medieval History
Language Lessons for the Elementary Student Vol. 1
Math Facts for Copywork
Knights of Freedom
First Lego League Club

Nyah
Math - Teaching Textbooks & DreamBox
Digital Media - My Tech High 
Art class at recreation center
History of the Horse
Language Lessons for the Elementary Student Vol. 1
Math Facts for Copywork
C8Kids
Young Stateswoman

Olivia
Language Lessons for Little Ones Vol. 1 & Vol. 2
Math Lessons for a Living Education: Book 1 
Speech
Reading with Mom- fairy tales, mother goose, picture books, etc.
Liberty Girls

Jolie
Language Lessons for Little Ones Vol. 1 & Vol. 2
Math Lessons for a Living Education: Book 1 
Reading with Mom- fairy tales, mother goose, picture books, etc.

Sophie  (Can't stand to be left out!)
Coloring
Counting
Reading with Mom- fairy tales, mother goose, picture books, etc.
Listening & soaking up everything going on around her!

Hawaii 2012 - Day 3 & 4

Day 3

This was a beach day and again we forgot to bring our camera. In the morning, our group had access to paddle boards, a canoe, and snorkeling equipment. Kurt and I decided to go out snorkeling. It was about a half mile swim out to the "best" area for snorkeling- beautiful, clear water, lots of fish, and where the sea turtles came to have their shells cleaned by the fish. 

I didn't know I should have taken some Dramamine before we headed out. I was so sea sick by the time we swam out there that every time I put my head underwater I felt like puking. I know what your thinking- then the fish would come to me! I guess we had a great calorie-burning swim - something we both needed with all the delicious food we were eating. 

Day 4

Kurt went golfing. No surprise there :). I spent the morning at the beach, stopped by the farewell luncheon to say good-byes, and then had the Hualalai Isalnd Stone massage in the afternoon. Heavenly!!

Then it was sadly time to make sure everything was packed up and ready to go. We had dinner and watched our last sunset. Then we climbed on the shuttle, caught the red-eye, and made it home to the snow and cold and 5 excited-to-see-us children. Well, 4 were happy. Sophie was quite angry at us for most of the day- giving us her best dirty looks every time we asked if we could give her a hug or snuggle. I guess by bedtime she decided we were forgiven because she climbed between us and went to sleep. 

Hawaii 2012 - Day 2 - Waterfall Hike

On Day 2 we went on a waterfall hikes with a group of ASEA associates. We had a blast! Our guide was great - very knowledgeable about the island history, plants, animal life and so on, and enjoys off-roading which showed in his driving. My only complaint is he seemed like he was in a big hurry. 

Our first stop was at a view point. Beautiful!

One thing I loved about the Big Island is the many different types of landscapes. Not far from the lush green forest we hiked in were a number of wide open fields. 

Our group and the awesome {ancient} 6-wheeled vehicle. 

Waterfalls!!

This is the waterfall where we went swimming. Kurt and i had to coax some members of our group to get in {it was raining and a little chilly}, but they all came in - even the ones who couldn't swim!

The company we did the tour with is trying to reclaim this area and turn it back into the original terrace style farm that once existed here.

Bridge and waterfall. 

Probably the most hilarious moment of the day {for me} was when I offered one of the other women some beef jerky . . . . and she's a vegetarian from Germany. Ha ha ha ha! Of course she didn't want any, but she also had no idea what it was. Welcome to the wild west! 

P.S. Notice we didn't have any horribly awkward photos this year? 

When you wish upon a star....

Love seeing these wonderful stories of our NF friends!

Tori - Dancing with the Stars

Wyatt - Deer hunt

We also had some of our wonderful family put together a team for the Las Vegas NF Walk. How fabulous is that? 

Thank you Elaine & Nathan!!
Thank you to everyone who joined them!!

Thank you! Thank you! Thank you!

Hawaii Day 2 - Day 2 - Walk

We had a lot of fun on our morning walks.

I found a crab exoskeleton and perched it on a sign for our fellow walkers. 

 Kurt scouted the lava rocks for golf balls

It hard to tell which is which with all the white coral pieces among the lava rocks, but Kurt perched the golf balls he found on top of rocks. 

While Kurt was hunting for rocks I made myself a coral cairn. 

Panorama of part of the beach

Olivia - Nov 2012 MRI Update - Part 1

I don't know much, but I've had a few questions from our wonderful family and blog readers who love and care for Olivia, so here's what I've got. 

First of all, Dr. V, Olivia's genetics doctor, has been out of the country for a conference. That happens when you have the best and other people want to talk to him too. I don't know if we'll get a chance to talk to him this week with the Thanksgiving holiday. But we already have an appointment scheduled with him on Nov. 29th for Olivia's yearly follow-up so *for sure* we'll learn all the nitty-gritty details then. 

 Anyways, here's what I know so far - from the MRI report:

{1st} 

Heterogeneous signal in the left parotid gland and masticator space with asymmetric mild enlargement of the left pinna. 

{2nd} 

Heterogeneous attenuation and enlargement of left parotid gland, masticator space, and a portion of the left pinna and likely representing a plexiform neurofibroma. 

I checked out an anatomy book from the library and used this medical dictionary. Cause I need help. And the anatomy book is going on my Christmas list because it's awesome. 

heterogenous- not the same. Not the same as "normal" or her right side or past MRI images of her left ear? 

attenuation- I think this refers to the energy level? The first section called it a "signal."

parotid gland- largest salivary gland located by left ear and jaw bone. 

masticator space- to masticate is to chew, so I'm guessing the tumor is pushing into the area where she chews? 

pinna- outer ear, visible part of the ear

Sidenote: the MRI reports always have words like "presumed" and "likely" but the doctors (neuroradiologists, genetics doctors, and so on) are confident that what they are seeing is what they say it is. Especially when the patient is known to have a condition like NF1. 

So, she has a new tumor in her left neck & ear area - in the visble part of her left ear, the parotid gland, and chewing zone. 

Her left ear does look a little fatter than her right ear. She has been frequently chewing with her mouth open lately- I'd chalked that up to being a 5 year old, but??? 

So it's there. What next? 

We start praying for miracles. We've seen them before. We know they happen. Best case scenario- it's not harming Olivia in any way so we watch and wait and watch some more. Other options would be surgery to de-bulk or chemo to shrink. 

Of course, we will do whatever will be best for Olivia. Love that girl.

The GOOD NEWS: 

Her optic nerve tumors are stable. 

The plexiform in her right eye cavity is stable.

The other tumor in her brain (right midbrain tectum) has decreased in size AGAIN. 

We are SO SO SO THANKFUL!

Hawaii 2012 - Day 1

Oh Hawaii was fabulous. Happy sigh.

We were in Hawaii for a reward trip with the management team and associates for Kurt's company, ASEA. So we were with a large group of people for many of the activities, but we also had times when it was just us. 

Each morning we went for a walk along the shore. Walking and talking with each other all by ourselves. It was magical. 

Our first turtle sighting - the turtles come to the beach to rest. They were amazing to see and occasionally they moved too!!

 Our whole group went on snorkel cruise - Fair Winds Ocean Guides. We forgot our camera - our underwater camera!! So I only have a couple pictures from my phone. 

My handsome man

While we were cruising along we spotted a humpback whale - the first sighting for out captain {pictured below at the wheel}. This picture is of everyone racing to the front to get a better look. We felt the boat tip forward. We did see the whale, but none of the pictures turned out. 

When we snorkeled we saw dozens of different kinds of fish and a few eels and had lots of fun talking to each other through our snorkel gear.

Um, dum diddle di dum dum dum

So.... how are you all? 

We are doing good. Really. Overall. 

Last week Kurt and I were in Hawaii having a fabulous time while our wonderful friends, the Alba family, and my awesome parents took turns taking care of our kids {without any major incidents, well there was a naked 2 year old incident, but that's normal so overall a success}. And I'll probably blog about our trip sometime soon.

But this week has been a challenging week of getting back to our regular scheduled programming without the regularly scheduled part. 

Olivia had an MRI and follow-up visits with the ENT and opthamologist. All on different days- Wed, Thu, & Fri - gobbling up our week and causing Olivia to declare this morning, on our way out the door, "I hate doctor's appointments." Her protest continued through her eye appointment with her uncooperativeness {is that a word?}. Which is so unlike Olivia, and yet so completely understandable, even if she did score 2 new Barbies this week. 

And I've reviewed the MRI report and there's a new finding. 

And it's just a little much to try to process amid the chaos caused by recovering from vacation and not being home all week.

Picture laundry, dirty dishes, toys, books, shoes, papers everywhere & a talkative 11 year old who I need to listen to now so he'll keep talking to me later, an intensely jealous 10 year old who is trying to get attention by driving me crazy, a 5 year old who is trying to understand why all this is happening to her, a snuggling needing 4 year old recovering from cold, and a 2 year determined to never ever ever let me out of her sight again {ever}. 

So I'm trying to do the only thing that works - hand life over to God and do one thing at a time. 

It's not always easy. Sigh. 

Going down

Yep, those are my girls.

Excuse me, Sir....

Have you seen Sophie or Nyah? I'm sure they are here somewhere.

Baby Blessing

Baby Ciaran and his doting cousins

mom of the baby, my sister Jesse

big brother of the baby, Jude, and Dad of the baby, Justin

Whenever I hold a newish baby I think, "I want another one!" But then I give him back and I'm good with the the kids I have.

Halloween 2012

I had so much fun this year getting my girls ready. We put on frilly dresses and tappy shoes. We did hair, sprayed their hair with glitter, put on some make-up. Lots of fun girl time.

Our boy showed up for about 15 minutes to put on his costume, eat a sandwich, pose for a picture, and then took off with his friends. They grow up so fast (well, sometimes it seems like they do).