Katie's Story- Part Three

Hi everyone. Those of you are who are our regular readers have seen my previous posts about Katie. This is the third update I'll be sharing. Here is a quick recap for those of you that missed the first two installments. After being diagnosed with Neuroblastoma at age nine, in 2009, Katie fought her way back through many treatments and chemo infusions and beat cancer. In February of this year, scans showed that it had returned. It has been 180 days of more treatments, scans, transfusions and lots of hope and faith.

In June, Katie, her big sister Melanie, and Bob and Mary Kay traveled to University of California, San Francisco so that Katie could undergo five days of radiation treatment for the second time in three months. Her first time was over Spring Break. So many miracles happened on that trip, but the most important was that she was declared NED, or No Evidence of Disease! Everyone, including the doctors, were in shock and awe. It wasn't expected, but miracles rarely are.

Since that fateful scan back in February, Katie has been on a rollercoaster of emotions. Good news and bad news all culminating in her final scans in August that still showed that no cancer was detectible. As such, she was able to travel to Hume Lake for a week with her church group from Crossline. A week of praising God with her friends did wonders for her spirit. She was able to take a two week trip to Maui with her family and her best friend, a wish of hers for a Hawaii summer vacation since being re-diagnosed. There, in paradise, another miracle occurred. The family met a man whose daughter had been through Neuroblastoma treatments three separate times since the age of nine. He was happy to report that she is now living a full life at the age of 32. Another ray of light shining down on them and giving them hope for the future.

Katie was voted ASB president for Ladera Ranch Middle School and is spending her 8th grade year planning activities and heading up committees to make it a year to remember. She will also spend this next year traveling to CHOC hospital in Los Angeles for chemo treatments each and every Tuesday. Her doctors believe that her chances of a healthy future depend on continuing the treatment that has been working so far. She has been chosen to participate in a study of Neuroblastoma and will be receiving a combined treatment of Vorinostat and Accutane. 10 pills in the morning and 3 at night. That story in itself is another miracle. Her parents had been praying for guidance and wisdom concerning the best next course of treatment to pursue. A new doctor that was unaware of the Hawley's history, randomly mentioned a study that a brilliant doctor was forming. The brilliant man he spoke of turned out to be one of Katie's other doctors. Her parents knew that his advice to become part of the study was the right move. Prayer answered.

Katie's school schedule can be revised so she doesn't miss out on important classes and knowing Katie, she won't let herself miss a thing. Her parents are worried that the extensive treatment will make her sick enough to want to miss school but as always, she is encouraging them, assuring them that she will be OK. Tutors are waiting to see if they are needed and teachers are more than willing to work with the family. Her friends have rallied around her once again and proclaimed that this will be the best year ever.

Mary Kay, Katie's mom, relies on prayers from her inner circle and takes it one day at a time. Katie is excited for this year. She is starting volleyball and can't wait to take on her responsibilities as ASB president. When I asked her what she wanted most for this year, she simply said "Straight A's. I really want to focus on my grades. Oh, and no drama." We're behind you all the way Kit Kat. Praying for health, fun and great memories! To follow Katie's story, please visit www.caringbridge.org/visit/katiehawley.

The Shame is Unnecessary Sister!

I am painfully aware that I may lose some friends by writing this blog post, at least temporarily. Sure, you'll wave from afar, you'll smile awkwardly as you shoo your children in the other direction, maybe you'll text to ease your conscience, but nonetheless, you will withdraw. I will understand. It will hurt, but I will understand.

And more importantly, I will still be here when you decide it's safe to be my friend, and for your children to hang with my children once again.

Last week, we got lice. Lice. LICE! (Pause for understandable shiver and head scratch.)

I blame the schools or the movie theaters or the barber or the pocket park. But it doesn't change the disgusting and plain truth that my house has recently been infected with lice.

When we discovered this tragedy, I decided we should move. Since that solution wasn't immediately available, I texted my friend. She shall remain nameless in order to protect her family. A fellow survivor, she was very supportive and very informative. When we finished our text stream (highlights below), I got to cleaning. At midnight, in between laundry loads, I consulted the WEB and was assured that contracting lice has nothing to do with hygiene. It said that I am not a dirty person. My kids are not dirty children. (WEB has clearly never picked up said children after a long, sweaty day at school, when they immediately remove their shoes in the car. That smell, sorry, there's only one word for that: DIRTY!) But stinky, sweaty, dirty, end-of-school-day-children have no relation to lice transmission. I checked. So people, we are not generally dirty. The internet says so.

Nonetheless, we did, very recently, have tiny, microscopic bugs crawling in our hair and probably all over the house, and in the cars, and in our beds, and on our multiple seating options and maybe even on our pets (except WEB said that pets can't get lice...oh, ok. They eat fleas and lick their asses clean but they draw the line at lice. Whatever.) So, our pets are the only things here that didn't need to be completely disinfected which, by the way, involves boiling and poison. Oh to be a dog, just for a week. Last week.

So to get rid of lice, you have options. You can pay a service to completely clean your house and your heads. Plan to spend $500 or more, depending on the severity of your case. They will guarantee no lice and even give you a certificate proving that you are uber-clean. (I've heard some private schools require this certification to allow your kids back in if they find a critter crawling on your sweet one's head.) You can also go the organic route with tea tree oil, vinegar, rosemary, mayonnaise, and other environmentally friendly, non-toxic treatment methods. Or, like me, you can go for the heavy stuff: washable and sprayable and practically ingest-able pesticides. Don't worry, I did my research and most of the websites said these are totally safe.

Once we decided our preferred method of de-lousing, like, as soon as we picked the tiny, moving blood-sucker from the scalp, we got to cleaning. EVERYTHING and EVERYONE! The whole family, even those of us that had no creepy critters and did not exhibit any signs of scratching, got treated. We cleaned the whole house. Really, the entire freaking house. Every blanket, sheet, mattress pad, pillowcase, pillow insert, quilt, towel, rug, cushion, stuffed animal, car interior, helmet, backpack, brush, hat, hair band/bow, not to mention every stitch of clothing that we own, was scalded and run through HIGH heat in the dryer. Everything else (including the pets, just for good measure), was sprayed, first with lice-killing poison and then a tea tree oil spray. After all, if we have to deal with lice, at least we can pretend we're at the spa.

I am hopeful we got them all. There weren't very many to begin with and since our treatment, we haven't uncovered any critters. But we will remain diligent and continue our daily family hair-combing time, closely resembling a family of chimps, for another few days. We want to make sure the lice stay away, as much as it's in our power to do so.

If you've ever had lice, I join you in solidarity and am hear to say it's ok. It totally sucks but the shame is unnecessary. Shame should be reserved for intentional and hurtful actions against others, like say, um, I don't know, running away when you hear your good friend has a lice infestation. That's shameful. But the act of catching lice? It's out of your hands. You can't be ashamed of something you can't control. So let it go sister. You don't have to keep this nasty little secret anymore.

And if you haven't had lice yet, don't worry. If you have children who attend school, daycare, the movies, get haircuts or venture outside, EVER, statistically speaking, you will one day get your lice.

But I will TOTALLY support you. I will share with you what worked for us. I will remind you that you didn't do anything wrong and I will assure you that you will get through it...all of it. The cleaning, the combing, the sterilizing, the stressing, the nausea, the paranoia, the repressing, the calling-the-school-and-neighbors and even the forgiving. Because as survivors, we get it...our friends, the ones who are afraid of us and our bugs, are right to be afraid.

But if you're a judging, abandoning-your-friends-in-their-time-of-need type of person, you'll probably get it twice.

{J}

Enjoy the post-lice-discovery text feed. I must warn though, this is rated MATURE due to a few expletives. Come on...I was STRESSED out! And disregard the few typos.

Going Gluten Free

Well, here I am again talking about healthy things and trying to change my ways, namely my ridiculous addiction to SUGAR and BREAD. Two of my favorite things. I love them when I'm happy. I love them when I'm sad. I love them when I'm _____(fill in the blank with any emotion). It's the overall experience of eating them, including the taste and texture, that takes me to my happy place. My happy place also keeps an extra 10 pounds on my hips and tummy, and that takes me to my sad place. So you see my dilemma.

Lately, my sad place has been getting many more visits. Especially in the mornings when I am looking for something to wear. I only have so many black outfits that will cover bulges and lumps and I'm tired of wearing the same thing. I do a lot of laundry! It's tiring. So, being pushed over the edge has brought me to the conclusion that I need to make some significant changes that don't feel significant. Does that make sense? I can't go to over the top or I won't stick with it. I know myself well enough to know that going cold turkey won't work either. It will just make me obsess about all the things I shouldn't have and therefore propel me to run for those exact items and eat them quickly (when no one is looking).

This summer, (bathing suit season seems to motivate me), I kept hearing about a condition called Gluten Sensitivity/Intolerance. Not only did I not like the way I looked in my suit, I was also feeling yucky. In researching, I learned that it's not the same as Celiac Disease which actually breaks down the small intestine. Unlike the devastating effects of Celiac, when people with gluten sensitivity eat gluten and products that contain wheat, they will feel bloated, fatigued, irritable, and may have achy joints and headaches. Also, they may suffer from Borborygmi. Have you heard of that? Neither had I. It's the fancy word for stomach rumbling. If you have this syndrome, you will feel gross after eating, say, a piece of pizza. That is me!

I was curious about why it seems that there are so many people suffering from this in 2013? It turns out, nutritionists believe that it's because of the way products containing wheat flour are processed now-a-days. Before the invention of mass produced items like Wonder Bread in the 1940's, wheat rolls and bread were made by letting dough rise. It took 12-18 hours for this process to be completed. During which, the yeast broke down the gluten part of the wheat so that our bodies could digest it more easily. In order to feed the masses, companies learned how to make bread quickly and the yeast didn't have time to break down the gluten. Gluten is not easily digested by our bodies and for some it causes problems as it builds up in our systems (yuck). So if this sounds like you too, try making your own bread and see what happens. I haven't tried that yet but I'd like to when Fall weather arrives for good (SOON I hope).

Because of what I have learned, I've started thinking more about the food I eat in order to gauge how my body may react. Is the cookie/French bread worth it? Sometimes yes, sometimes no. It has definitely changed my outlook. It has also given me a new project. I have slowly been researching and experimenting with gluten free items and here is what I have discovered so far:

It can be very expensive! It's definitely important to try different items to find one that is to your liking but when crackers are $6-$8 a box, it can make it unpleasant to continue eating them if you've found they taste like cardboard. Finding a brand you like and buying things made by that same company is usually the key. Luckily, there are SO many options now, even in restaurants. It takes away the anxiety if you love going out to eat but don't want to feel like you should crawl into bed right after dinner. So, moral of this story: it may take a little more out of your grocery budget for a few months, but your tummy will thank you!

Another issue is getting used to the taste. It can really take some getting used to! Gluten free Bisquick is awesome because its so easy but the pancakes and biscuits do not taste the same. It's not BAD, it's just different. So stick with it...when I made the decision to try this new way of eating, I went out and bought all the baking products I could because I really wanted to make a chocolate chip cookie that tasted the same as the one on the Nestle bag. After MANY tries it finally happened (kind of)! I can now eat a cookie and not feel like I gained 10 pounds of water weight and getting a stomach ache. It's definitely not the same but its not horrible either. Unless, of course, you use a vegetable derivative flour for cookies. Then the after taste is like anchovies. Fish and chocolate don't mix. It's a learning curve people...

The bottom line is that I feel SO much better! I can and do still eat a piece of pizza or a "normal" cookie here and there, but I noticed the difference in how my body reacts so I'm compelled to stay away from it more often. If you feel like this may be an issue for you, try a little test. Stop eating gluten/wheat products for a week and see if it makes you feel better. If so, go a little longer for a detox (a good month is recommended) before slowly introducing some things back into your diet. You may feel, like I did that when you limit those items, your body can tolerate them more easily, and you can eat a bagel for breakfast once a week and feel fine. Going gluten free isn't easy but it can make a huge difference in how you look and feel. Isn't that what our happy place is really all about after all? {H}

Cray-Cray and Letting it Go!

A wise friend recently said to me "Men don't get emotionally connected to the moment like women do," and I thought..."BRILLIANT! Must blog that!" So here I am, demonstrating yet another difference that I've noticed between men and women, or at least between me and my man.

So last night was back to school night for my middle-schooler. She's in 8th grade now. WOW! I still can't entirely wrap my head around my first born, my little girl, lover of all things pink, watcher of Bear and the Big Blue House (I absolutely ADORED Luna! Remember the singing moon, Luna?!?), consumer of salami and cheese like a true Italian, singer of Sara Hickman (and if you don't know who she is, GOOGLE her immediately!), reader of Angelina Ballerina, my baby, finishing primary school.

Sorry...I digress...last night was back to school night and I couldn't make it. And I felt really sad about that. My husband, a teacher at her school, was obviously there but couldn't attend as her "parental representative" because he had to run his own class for the night. He assured me that I shouldn't feel guilty because I was sick. And that I shouldn't be sad because she has many of the same teachers as last year and I went last year so they know I care about her, or at least I did when she was in 7th grade.

Although he was trying to help me feel better, I still couldn't reconcile my harsh, self-imposed pangs of regret. Then he pointed out that, due to my vertigo (that's my illness...PITA vertigo!), I would likely do more damage if I showed up at BTSN, looking like a zombie, trying not to lean to the right or worse, fall over, incapable of carrying on an intelligent conversation and unable to move my head for fear of the awful spinning, and we all know that nodding is the primary mode of communication when you're sitting at your child's desk listening to her teachers talk about all the cool things they're going to learn in the 8th grade. He was right. It was better if I just didn't.

And then, all dressed up in his fancy BTSN suit, my handsome, science-teacher-of-a-husband, kissed me on the forehead, said, "Don't feel bad...let it go," and went off to school. Easy for him to say.

This is the difference between my husband and me. He can intelligently process a situation, find the reason in a decision and move forward, LET IT GO, no big deal. On the other hand, I, too, can intelligently process a situation, but that typically requires me phoning-a-friend, embarking on an extended survey of all factors, and lots of discussion and reassurance. My husband does not have the time, nor the patience, to help me "intelligently process." He says I'm "beating it over the head until it bleeds," and I'm really not entirely sure what he's referring to.

But I do know that we do things differently. We think differently. We process differently. And last night, when our daughter, our so-grown-up 8th-grader was essentially non-represented at her FINAL back to school night of her entire primary school career, I was sad. He was rationale. I had guilt. He thought I was INSANE. I wanted reassurance. He wanted me to let it go. I wanted to process some more. (OK...I see his point about the beating and the blood and all.) He had evaluated the chain of events reasonably. I had connected to the moment - the LAST of all back to school nights - emotionally. And that's the difference.

What it came down to was that I was missing out on a moment, a moment that mattered to me, that I wanted to store for all eternity in my memory, along with all of the other back to school nights. And more importantly, I didn't want her to feel in any way, that she wasn't important. I wasn't as concerned about proving to her teachers that I'm an involved and present parent. I am and I know that. And I wasn't overly worried that I'd miss some critical bit of information. Seriously, I read the School Loop email EVERY day, and her dad works at the school...she's not going to miss anything.

Once I'd processed the disappointment, found its source and replaced it with some good ole' self-assurance, there was only one thing to do before I let it go. I sat down my sweet and spicy 13-year-old and told her how I felt about missing her final back to school night and that I wanted her to know that she was so LOVED, even though I might've been the only parent in all of Ladera Ranch Middle School that didn't show up to back to school night, and finally, that I was so, SO proud of her. Then I gave her a great big hug.

And she hugged me back, a big, I'm-not-too-old-to-hug-my-mom-at-least-in-the-privacy-of-our-own-home hug, giving me an even sweeter memory of her last back to school night. Then she calmly agreed with her father and said I was acting "CRAY-CRAY."

Spinning, CRAY-CRAY, and letting it go. It'll do.

{J}

'Twas The Night Before School...

'Twas the night before school started and all through the house, 

Not a single child stirred, it was just me and my spouse. 

Our three kids were nestled all snug in their beds,

While visions of summertime still danced in their heads.

My husband and I, exhausted beyond a doubt,

Had just pulled the wide range of lunch fixings out.

We packed plastic baggies with fresh fruit and snacks,

Filled water bottles and searched for ice packs.

For the next day a new school year would begin,

The thought of the kids back in school made us grin.

We love our children, now don't get me wrong,

But this year our summer was unusually long.

Beach days, star-gazing, camping, and more,

Kayaking, barbecues and friends galore.

'Twas a memorable summer, chalked full of fun,

But after twelve weeks, like most, we were done.

The teachers were needed to make some new rules,

To reign in our wild ones, to retrain these fools!

For seven full hours, they'd teach them cool things,

And inspire them with knowledge that each new day brings.

Math facts, fluency and science were all in store,

Kindness, respect, "best effort" and more.

For seven full hours, they would use their brains,

While we hoped that last year's facts were retained.

The backpacks were ready, not one thing was missed,

Stuffed with the "suggested" supplies from the LIST.

Their outfits were hanging, so fresh and so clean,

Collared shirts for the boys, a new dress for our teen.

We hoped in the morning they'd be alert and lively,

But cute, well-dressed zombies was way more likely.

Our late summer evenings and sleeping past nine,

Made it impossible to get to sleep on time.

Their cranky demeanor surely couldn't last,

A week of early rising would fix them up fast.

The new year was exciting, grades four, five and eight,

And once we adjusted it was sure to be great.

The things of the summer that we'd surely miss:

Playing and late nights and sleeping in -- BLISS!

Things we were ready to put in the past:

Messes and fighting and being harassed.

"Mom, he touched me," and "She took my stuff,"

Or "I'm bored," "I don't want to," and "My life is so rough."

The constant demand for friends, cash and food,

"I swear kids, one more request and I'll come unglued!"

Yes, summer was over and it was a good thing,

We needed a break from all the bickering.

And the kids needed learning, no more TV or Wii,

Tomorrow would start school and a slew of activity.

Which meant for us parents a different type of work,

The lax days of summer replaced with homework.

We'd be needed for chauffeuring, reading logs and more,

Thursday folders, concerts and flash cards galore!

But as we look back on the first weeks of school,

Maybe missing the trips to the beach or the pool.

Or maybe we're dancing cuz they're out of our hair,

Either way, there's one thing that we certainly share.

Come May when we've gotten through standardized tests,

When we're all done with essays and science projects.

We'll longingly look at the year that has past,

And say to ourselves "Summertime...at last!"

{J}

Starting Somewhere

Do you have a goal but don't know how to reach it? Is there a bold dream simmering inside just waiting for you to take the first step? Are you unsure where to begin? Well, it's all part of the process, and everyone's process is different. What matters, is that you begin somewhere.

A process is a systematic series of actions or steps taken to achieve an end. But not all processes begin in a systematic manner. In fact, many times, they happen by accident. That's what happened with me and my writing process. And it was the best accident of my life, I might add.

Almost two years ago, my friend Holly joined a writing group. She'd been trying to launch a new writing/blogging venture, praying for guidance and fellowship and encouragement, when she found a beat up piece of paper in her courtyard. It was a flyer advertising a writing club in Ladera Ranch for women looking to find and give life to their narrative voices. As it turns out, the group facilitator had only posted three flyers around town. Kismet!

Like Holly, I'd always written: poems, short stories, personal essays, but I wrote for me, not for general consumption. Like Holly, I'd always felt like I had a story to tell, but I was waiting for a time when my desire to put pen to page would fit in with the rest of my life. (I think I was also waiting for the the wizard to dole out my dose of courage.) And like Holly, I was looking for a sign. Little did I know, it was sitting right in front of me and we'd be joining forces soon.

She invited me to join the group. That's how I became the recipient of Holly's hand-me-down fate. During my second meeting with the group, I read a portion of my new book for feedback and criticism. I was so nervous I thought I would have an anxiety attack right in the middle of chapter one. But I got through almost fifteen pages and I was fueled by the feedback the group provided. So I kept writing. Really writing. I wrote from a place inside me where ideas flourished. I wrote scenes as they played out in my mind. I wrote paragraphs that I didn't recognize when I re-read them. I wrote until the plot firmed up its edges, the edits tightened up the conflict, and the characters became family. I wrote until the words had all been written.

My writing process didn't begin systematically. It wasn't the traditional, outline-draft-edit process, but I got to the series of steps eventually. As I edited, I created a plot line, a character chart and a synopsis. Interestingly, the absence of these things on day one gave me and my story creative freedom and it was better that way.

Almost two years have passed since Holly shared her writing goals with me. In that time, we have researched all things writing, we have started a blog to build our writers' platform, we regularly write columns for the newspaper, and we have refined our writing skills. I have finished my first book (seeking literary representation now) and the series we are co-writing has a strong foundation, in fact, a formal outline spans the wall in my garage, and we are almost done with book one. With thoughtfulness we are implementing a system of actions. Leaving room for creativity, we are taking steps toward our goal. And most of all, we are embracing our writing process, the one that works for us.

So when dreaming and planning and setting those goals, be flexible. Look for the signs, begin somewhere and then embrace your process, whatever shape it may take. I may have stumbled upon my writing endeavor by accident, but my dream, my passion, my process, is anything but. Neither is yours.

{J}