180ish days...

Is 6 months too early to start a countdown? Well, if not, then roughly 180 days of chemo left! Give or take a few days!

Today was another TCD (Tuesday Chemo Day)!!! Also known as my day date with my love. Today for our special day, we sat together for 8 hours while I was poisoned. It was lovely! He really knows how to spoil a girl!

But really it was just another chemo day, now just a lot more to go. 

Things of lately...

 I no longer have reflexes. Who knows if this is a side affect of chemo or what. You can hit my legs for ever, with no response. 

My muscles and veins are curling up around my port in my chest, something no one has seen. Feels a little creepy. 

I have permanent neuropathy in my hands. 

My eyebrows are only half way gone!!!

I'm kind of bummed about this one, I still have leg hair and armpit hair. Guess it's time to shave and stop holding out for chemo to work it's magic. 

I can lay flat!!! (This is huge)

I made dinner, like a real dinner! Haven't done that in 6 months. 

I have some pretty epic mouth sores. (Terrified of going to the dentist after). 

Had to break the news to the kids that we won't be able to go to Disneyland for their birthdays. Lets just say they were heartbroken. March 2015 was our goal, hopefully Fall 2015 now!

We are blessed by loving family and friends that help with our children, meals and our home. We are so thankful and feel so loved!

(Today's chemo!)

(Darling Team Kenna doll, made by our neighbor!)

Hair progress...

It's time for a haircut, or in my case another round of chemo!!!

"We may encounter many defeats but we must not be defeated."

In fact, it might be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it. 

Maya Angelou

Jenny's strength...

Jenny’S Strength is a charitable organization that provides comfort and encouragement to children who have a parent with brain cancer.Jenny’S Strength gives each affected child a Pillow pet. 

Parker, Macey and Addison all received a package in the mail today! They all have a sweet pillow pet to cuddle with. Also each member of our family received personal, uplifting letters. 

Thank you Jenny's strength!!!

Orange belt...

We have our own personal ninja! Our mr. Parker is incredible!

I was so glad to be there with the family at his belt test. 

He is now an orange belt and in the juniors class. He is incredible, seriously you should see his kicks and splits, they will blow you away!

So proud of all your hard work Parker!

We love you!

Enjoying my sweet little hooligans

"You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose."

I am so lucky to be their mama. It is a privilege and honor to love them, to teach them and to have them. 

I love their goofiness!

I love their energetic spirits. Aaron always says their spirits are too big for their bodies that's why they can't stop moving. 

Of course I love everything about all 3 of them. They are terrific kiddos!

And I'm lucky to be theirs!

6 down 6 to go...

Wow! Yesterday (Thursday) was all sorts of emotions. Nervous, excited, stressed, scared and relieved. 

In 6 months I've had 13 scans, yesterday was one of them to see how the chemo is helping. Well no growth, no change! That is terrific! For weeks I had been preparing myself for the worst. Making myself sick and stressing out. I would imagine the dr giving me terrible news and I would rehearse in my head over and over how to tell my children that I was passing. But I didn't have to. Whew. 

Aaron was with me, the day was draining. It started early with lab work, then my scan, more blood work then waiting for the dr. Then when the dr said no change, Aaron screamed, "YES!" I was so glad to have him there all day to support me, but also for his reaction!

I was really hoping that we would be able to finish up chemo. But the dr suggests we continue until March of next year. That kind of puts a damper on our Disneyland trip, as we have been promising the kids. Oh well, I'll finish up strong then we will party hard!

Digging deep for some extra strength, comfort and courage. 

"When things start to happen, don't worry. Don't stew. Just go right along, you'll start happening too!"

At ease...

Full advantage of adventure...

I've had some really miserable days. But lately I've had some better days. So I'm taking full advantage of this good time with my family. 

We spent the day out adventuring. 

I hope for more better days and more adventures to come!!!

I believe in perfection! And she is perfect in every way!

The pursuit of perfection, then, is the pursuit of sweetness and light. ~Matthew Arnold

Aging fun...

It's a little nerve raking to see how good I am at looking old. Here are some fun, crazy family pics:

We might have had a little too much fun!

You never know...

Smile...

Yikes...

Parker asks me all the time, "why I wear scarves, why don't I let people see my bald held?"

I told him I was a chicken. Then he dared me, yes dared me to go without a scarf next Wednesday. 

I hope he forgets about it, cause I really like my scarf, it's my comfort. 

But, the real reason I cover up my head is cause it is quite funny looking at the moment. Some hair has started growing back on the sides, but nothing on the top. I'm pretty sure the no growth strip on the top is from radiation. If it doesn't grow back, I'll have a sweet part or a gnarly comb over. 

I'm really hoping for the top right!

Proud mom!!!

We were really about school this year for Parker. This year he was able to get into the Chinese immersion program. All the children in his class have had an extra year in the program. 

So we worried about Parker being behind or struggling, and the stresses of home. 

But, oh boy, we were wrong. He has enjoyed his time at school and is doing just fine. 

Mom brag moment from his teacher:

Parker has been doing a fabulous job in my classroom. I am so impressed by his good working habits and how fast he is catching up with the rest of the class. I can say that now he is one of my top students. I just want to share with you a project, lantern that we did in class. He used glue to write his name and number 6 in Chinese perfectly. So proud of him!

My middle baby...

I love walking her to preschool. 

I secretly love her tight hugs, saying,"don't leave me"

I love her feistiness and stubbornness. 

I love her loud squeals from bugs as she dumps mud on her head. 

I love her honesty!

I love her tiny teeth and stinky feet. 

I love her kind, tender heart!

Honestly, I love everything about her!

I think about death. I think about it alone and quietly. It's not something anybody wants to hear/talk about. 

And I'm ok with that. 

It's on my mind a lot. I'm not worried about myself passing. I'm terrified for my husband and children. I always tell Aaron he has to remarry, he gets so angry and doesn't want to talk about it. 

I want our children to have a mother. I want our children to be loved, taken care of, taken out on fun adventures. I want them to explore and get dirty. Have stories read to them and catch bugs. I want them to feel safe and loved. I want them to be comforted when they are sad or scared. And I want to be the mom that does all that with them!

Cancer opens your eyes. It helps you to realize how important each day and each person really is. 

Cancer has helped me to appreciate and accept the service of others. 

Cancer has helped me to enjoy every tantrum, cry and fight I have with my kids. 

Cancer has helped me to ask for help. 

Cancer has helped me to know I want one more second, one more date and one more moment with Aaron. 

Cancer has instilled fear into my body and soul. 

Cancer has made me happy but also extremely sad and lonely. 

I'm grateful for little reminders...

"Sooner or later, I believe that all of us experience times when the very fabric of our world tears at the seams, leaving us feeling alone, frustrated, and adrift.

It can happen to anyone. No one is immune.

We can choose to be grateful, no matter what."

-Uchtdorf-

In one week I go in for another MRI (I'm pretty sure I'm magnetic and glow by now). This is probably my 50th MRI (ok that's an exaggeration, but I've had a lot).   This MRI is the deciding factor to see what my  next step will be with chemo. Wish me luck!

Out adventuring...

We had kind of a crummy summer. I felt like the kids missed out on adventures and discovering. Today I felt pretty good, so we headed out to venture in nature!

The fresh air, cold stream, bugs and leaves changing made for a perfect afternoon!

Hawaii lovin'

Macey Mae had a cute visitor from Hawaii this week. (Jake, cousin) She was smitten!

As soon as he left...

Can I go on a date with him?

Can he go to Disneyland with me?

Can I go visit him in Hawaii?

Can I mary him?

I might have bribed her with a picture of him if she went to preschool good. 

She is constantly talking about Jake. 

She likes his hair and that he doesn't stink like other boys. 

Oh goodness! What are we going to do with our boy crazy 4 year old?

More cancer info...

My symptoms began when I was 3 months pregnant with Addison. I remember bending over to pick a tomato out of the garden, and my world started spinning.  I had daily episodes of vomiting, headaches, positional vertigo and dizziness. Doctors said it was pregnancy hormones. I tried physical therapy, positional therapy, ear nose throat doctor, audiology doctor and non of them could figure out what was going on. I continued going and trying all kinds of doctors, all assuming it was a hormone change or different manifestation of migraines. 

I remember crying to Aaron, I thought that this is how my life was going to be forever. So I better get up and go through it. 

After 2 years of feeling terrible, I finally got an MRI. During the MRI they knew immediately something was wrong. They sent me straight to my neurologist who sent me straight to the ER. They saw bleeding on the brain, but at the time thought it was a cavernous malformation. After many 2nd opinions, all the neurosurgeons agreed that it was a cavernous malformation and no rush for surgery. So my plan was to wait till Fall. 

I am so glad Aaron was persistent and said we need to do it sooner. March 2014 I went in for brain surgery and left a week later starting my cancer journey. 

I have been blessed with an amazing, talented, supportive medical team through it all. 

I was diagnosed with a grade 4 brain tumor. 

Medulloblastoma is a highly malignant primary brain tumor (cancer) that originates in the cerebellum. 

It is very invasive and rapidly grows, unlike most brain tumors, it can spread through the cerebrospinal fluid (CSF) and frequently metastasize to different locations in the brain and spine.

Chemotherapy is an important part of treatment for patients with medulloblastoma. It can significantly reduce risk of recurrence (which is typically fatal). 

“A person’s a person, no matter how small.” -Dr. Seuss-

This little one is a hoot! With brother and sister gone at school, her personality really pops out! She is fun, smiley, giggly, kind and loving!

Lemonade...

YOU are not forgotten... YOU are worth being loved...

Counting Your Blessings—Even in Adversity

Today I walked with Macey to school in the rain!

How Great thou art...

Luke Family...

I have been blessed to come from an incredible, loving family!

To be a Luke: You first must be awesome, and second you must have adorable, cute children!

Introducing the Luke's...

You must also be the coolest grandparents around!