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On January 5th, 2011, Lily was admitted to the Phoenix Children's Hospital because she was experiencing pain in her legs and back. A week later and after what felt like a million tests, scans and biopsies, we had a diagnosis: she has a soft tissue tumor called Alveolar Rhabdomyosarcoma. A PET scan revealed a small tumor in her foot that was not apparent from the outside; it was not until the cancer had already spread to her bone marrow that she experienced any symptoms. This came as a total shock to everyone as Lily has always been healthy, active and full of energy. We love our darling girl and her sweet, happy, loving spirit. This website is for friends and family to stay connected during this difficult time.

Thursday, June 14, 2012

I don’t know how else to say this, so I’ll just say it: the cancer is back.

Last week, Lily’s routine PET scan revealed something “concerning” in her chest, so an MRI was ordered. I was terrified of what this could mean, but hopeful that the MRI would show that there was nothing to be worried about. This wasn’t the case.

The day of the scan, the doctor called me on the phone and asked me to come back to the office alone to discuss the results. The MRI of Lily’s chest had revealed a mass about 2x3 cm near her thymus and close to her spine. Because imaging can’t tell if such masses are cancerous or benign, the doctors ordered a biopsy of the mass.

I can’t tell you how horrible it was to have to tell Lily that the scans had found a mass and that she was going to need surgery. She was surprised, but confident that she was fine. I had told her what the doctor had told me, which was that the mass could just be a part of her enlarged thymus, a post chemo effect called thymus rebound.  Lily told me that she wasn’t worried about surgery because she had already had two bone marrow biopsies, so she kind of already knew what to expect.  The procedure was scheduled for early Monday morning.

On Monday, we arrived at the hospital early, and after hours of waiting (something we have grown accustomed to), spoke to the surgeon. She explained the difficulty of the procedure because of the position of the mass in Lily’s chest and the risks involved. I could tell that Lily was nervous but in typical Lily fashion, she wouldn’t admit that she was. She was too busy dressing up her stuffed cat, “Kitty,” in doctor gear (mask, gloves, hat, etc.) and exclaiming in an English accent that “Dr. Kitty” was “now ready for the examination” and “please remove your drawers!” Only Lily can lighten the mood during stressful situations like this.

All went well during the procedure and Lily bounced right back afterwards, saying that the incision barely hurt; and once we got home, chowing down on Mongolian Grill (thanks Grandma) and begging to go out and play with her friends.

The results of the biopsy came sooner than expected. Yesterday, the doctor called to ask us to come in and discuss what they had found. After taking a while to compose myself, I called Lily from her friend’s house so that I could prepare her for what the doctor had to say. I began with, “The doctor called with the results from your biopsy.” At this, she turned and looked at me with such a look of excitement and happy anticipation, that I knew she expected me to tell her that the results were good and she was fine.  It broke my heart to say, “They found cancer.” Her face crumpled. She finally broke down and cried.

We lay down and I quietly rubbed her back; I was prepared to let her have a good cry. But as usual, she amazed me with her strength. Very quickly, she stopped and sat up. Despite everything, there is just not a lot to cry about when you don’t feel sorry for yourself. And astonishingly, she doesn’t.

Oh, believe me; Lily knows only too well how bad cancer sucks. But she has never put herself in the role of the victim. She also knows how unfair cancer is, but she has never said, “Why me?”

I think that the hardest part of coming to terms with this again is that we all really thought that Lily was in remission for good. We actually thought we were done with cancer. And we are. So sick as hell done with it. Only, it’s not done with us.

Sunday, April 22, 2012

Lily's Foster Baby

For the past three days, Lily has been taking care of a baby bird that fell out of a nest in our back yard. It's been a full time job, but it's one that she has taken on gladly.


She looked up care of baby birds online and has been feeding it every hour or so during the day. She made a mash out of chicken food and the baby loves it. At night, she brings the bird inside so that it will stay warm.

This is Alex. He's a sparrow.

She is so caring and such a good no nonsense nurse! While I worry that it's eating too much, that it's eating too little, that it might not live, that it has germs...Lily seems to know just what to do to take care of it, then she washes her hands and tells me not to worry.

Monday, April 9, 2012

Monday, March 26, 2012

Shining Stars Ski Trip

Lily had so much fun on her ski trip to Colorado.


She skied standing up AND sitting down :)
She played in the snow
And showed off her mad dance skills


Made lots of friends
And made everyone laugh
A big thank you to everyone who gave of their time, energy and love to make this a very special time that Lily will always remember!




Denver news clip about the trip: http://www.thedenverchannel.com/video/30690343/index.html

Friday, March 2, 2012

Marvelous March: Exciting Adventures Await

Today the PCH clinic had an end of treatment party for Lily.

This is how excited she was:

Hooray! No more chemo!


Lily is also looking forward to being in the fashion show this weekend and next weekend she goes on her ski trip to Aspen, Colorado with the Shining Stars Foundation. This trip is going to be an amazing experience for her. She will be gone 8 days and will have daily one on one ski instruction and lots of fun activities.

And to top it all off, Make a Wish Foundation is going to grant Lily a wish!!

Her wish?

To have her own private Victorian cottage playhouse/ art studio in our backyard!

This is is sort of what she is envisioning. Source: The New York Times

Thursday, March 1, 2012

Lily's MRI and PET scan did not indicate the presence of any cancer in her body!!

Her doctor's appointment to review the results isn't until Friday but I couldn't wait that long-- I called the doctor the day after her scans and he confirmed that she is in remission and that as long as her scans continue to look good, she is done with treatment.

So although this is her second negative scan, we are doubly excited because Lily is not only in remission, she is finished with her year long intensive chemotherapy treatment!!

This is truly an amazing miracle and we are incredibly grateful that things have gone so well. It's been a tough year and Lily has had to be so strong through it all. She is certainly proof of the power of love and positive thinking!

Lily has never once doubted that she would get better and through all the many, many chemotherapy and radiation treatments, she never lost her focus. No matter how sick she felt, she simply accepted it all with the grace that only a child could have.

For us, this was important. There was no anger toward the cancer. For us, this was not a "fight" or a "battle" to be "won" or "lost." Although I think many people like to use that metaphor, we do not. For us, it is a matter of accepting what is, dealing with it, and moving on. I learned how to do this from Lily. When Lily first got sick, I remember saying, "Life is hard enough without cancer." This past year has taught me that it's all in your perception. Life is only as hard as you make it. A heart full of love and gratitude is the best antidote to a mind full of doubt and worry.

Sunday, February 26, 2012



One thing I’ve learned this past year: even when things seem at their worst, there is always hope.

Hope is the center of light that keeps you going when you are otherwise surrounded by darkness. Amazingly, it is that darkness itself that allows you to behold the beauty that is hope and love. Knowing this instills gratitude in my heart regardless of what each day unfolds.

To all of those radiant souls who have lit our path this past year with your love, your generosity, your faith and your hope, I send a heartfelt Thank You, from my heart to yours.

Monday, February 20, 2012

Renaissance Fun

Lily was so excited to go to the Renaissance Festival this year and we had a terrific time!! Of course we had to dress up, eat turkey legs, watch the joust and shop til we were ready to drop!




My favorite part was lounging here in the grass and watching the drum and bagpipe show called Tartanic:



Gotta love men in skirts playing musical instruments!!

Although Lily was tired by the end of the day, she is so much stronger than she was at this time last year and I am so very thankful for that. Each day is a blessing!

My Crafty Valentine

We had a fun Valentine's Day craft party this year.

Lily 'n Lacey making beauteous valentines
Lily made Lovey a valentine outfit out of one of my old sweaters

Lily and I made Homemade treats for our lucky valentines
Love rocks!! Yes, it does.

Lily's eccentric valentine gloves made from an old sweater :)
Lily and I have become super crafters!! Our new thing? Instead of donating old clothes, we have been recycling them into awesome new items. Cleaning out my closet yielded us lots of inspiration! A tunic top that I had for years because I loved the material, (but never wore because it didn't look right) became a stretchy headband with attached matching flowers and two different scarf head wraps. Another weird silk top that I bought for $ 3.00 because the fabric was amazing became the coolest matching pillows:


Instead of buying new things, we've been looking around the house for things that we can transform. One of our favorite ways to do this is by collage/ decoupage. I made this large sign for my kitchen from a piece of scrap wood, scrapbook paper and paint:

All you need is love and maybe a little imagination :)


 

Sunday, February 5, 2012

We've Got Eggs!!

Our chickens have been laying for the last few weeks.

Lily loves eggs and it makes me glad to know that these ones are coming from happy, organic fed chickens.

During chemo, she craves certain foods and can only eat those foods. I'm glad that her most recent cravings have included all kinds of soups. One of her favorites is egg drop soup; how convenient that we've got plenty of eggs!

It's incredibly quick, easy and yummy:

Egg Drop Soup

4 cups chicken broth  (I use organic "Better Than Bouillon" to make my broth. I'm curious how it would taste with a vegetable broth?)
1 tablespoon cornstarch
1/4 cup of chopped carrot
1/4 cup of mushrooms
1/4 cup of corn
chopped green onion
2 eggs

The great thing about this soup is how fast it is to make. It only takes a fraction of the time most soups take to make. You can also use any veggies you particularly like or have on hand. I think water chestnuts and peas would be especially good too.

In a medium sauce pan, bring broth and veggies to a boil. In a small bowl, mix a small amount of the broth with  the cornstarch to dissolve, then stir into the pan. The broth should begin to thicken. If you like your soup thicker, add more cornstarch. If you don't care about thickness, leave the cornstarch out. It won't affect the taste.

In a separate bowl, scramble the eggs. Once your broth is how you like it and your veggies are cooked enough, stir in the scrambled eggs. The eggs quickly cook in the boiling broth. Top with green onions and viola! you're done-- 10 minutes tops.

Saturday, February 4, 2012

Long Chemo Week Over!

Lily had chemo everyday this week. It was Vincristine and Irinotecan, which made her feel so sick in the beginning of her treatment. What a difference this week was!

Lily has been eating, gaining weight and feeling relatively good. Each day was a countdown to the end of her treatment, which is coming up soon. She is scheduled for chemo Monday (Vincristine), then she will have another PET scan. If everything still looks good, she will be officially finished with treatment and will only need to go in for evaluations every 3 months.

We are excited/ anxious to see the results of her scan and will obviously keep everyone updated!! Please keep Lily in your thoughts/prayers...she's gonna rock this thing!

In other news, she is planning to attend a ski camp in March. The camp is in Aspen, Colorado and is funded by Shining Stars Foundation. It's going to be an awesome experience and Lily will have one on one instruction to learn how to ski!

Lily will also take part in a fashion show in March to benefit the Children's Cancer Network. Click here to register if you are interested in attending.

Friday, January 20, 2012

One of my New Year's resolutions is to stop buying unnecessary crap stuff, and when I do purchase something, to be more conscious of how it's made and where it comes from before I decide to buy it. In general, I also try to buy things used, as this can really help to reduce our carbon footprint.

Likewise, buying organic foods is not only healthier for our family, but also benefits our Earth. To go along with this, another goal I've made this year is to buy more local organic produce (I want to make the Farmer's Market a weekly habit) and to eat less meat.

Lily and I wanted to share with any of our readers this great documentary we recently watched called Dirt! The Movie:


This movie really makes you realize how precious this simple resource is and how important it is to protect it.

Lily has always been conscientious about protecting our Planet, and she even educates me on the subject. I still remember how she banned any products containing palm oil from our house more than 2 years ago when she was only 9. While we were at the zoo, she had learned about the effects of deforestation due to palm plantations being planted in places like Indonesia. She became very concerned about the effect the deforestation had on the wildlife in that area. 

Soon after this, she discovered that Girl Scout cookies contain palm oil. Being a Girl Scout, this was a source of concern for her. I'm proud of her for sticking to her principles and choosing to raise money for her troop by other means instead of selling cookies.

Lily is certainly a singular individual and I've always taught her to embrace her uniqueness and to think for herself. Having to live through Cancer has only reinforced these qualities in her. She has a source of inner strength that amazes me. It is my hope that she will use this strength, her desire to help others, and her creativity to really make a difference in the world as she grows into an adult.

Another great documentary that we have watched is the movie Bag It. We watched this movie on channel 8 last year (I don't think it's available for free online, but is definitely worth purchasing). It's sobering when you realize how much plastic humans consume. What can we do?!! Awareness is only the beginning:



Another resolution of mine is to reduce our family's consumption of plastic. It's not enough to just recycle the plastic that we purchase. We also need to really think about the purchases that we make and what we can do to make a difference within our own lives.

Like a small ripple in a pond, we never know how our choices can affect the whole. As a parent, it is my responsibility to teach my children that their choices are important and that their actions show what kind of person they are.

When it comes to shopping bags, we use reusable ones. However, I will admit that there are times when we forget to bring our reusable bags (I will be better about this!) and we wind up with a bunch of plastic bags. Usually, we take these to be recycled at the grocery store. Recently, though, Lily and I discovered how to make plarn (plastic + yarn = plarn) to use in crochet. I'm making a cute striped reusable shopping bag (out of shopping bags) and Lily has been really helpful with connecting the strips of plastic for me.

More to come about this fun project!

Friday, January 13, 2012

Hooray for Friday!

Lily has had chemo every day this week, and she's been so brave. Monday when she woke up she had a sore throat, so on top of nasty chemo, she has had to deal with that. Also, with her port accessed, she has a hard time getting comfortable and finds it difficult to sleep well at night.

The good thing is that she has kept her appetite all week, although with her sore throat, she hasn't wanted much more than soup. Luckily, making all sorts of yummy soups is kind of my specialty!

We are so glad it's Friday. And, it's a 3 day weekend! Next week, Lily only has one day of chemo, then she is off for a week. After that, she repeats the cycle of 5 days straight followed by one day. And then...her treatment schedule is complete.

We will go in for another evaluation after that point.

Thursday, January 12, 2012

Lily has been researching the Plains Indians and she created this diorama:


She made the patterns for the tepees, then cut them out and put everything together on her own. She researched Native American tepee designs and painted her models.


Now that she knows so much about the subject, I'm determined to purchase a real tepee. We want to spend the summer in Idaho and pitch our tepee on our land near my dad's family. It would be our base camp as we explore the area- Yellowstone and The Grand Tetons specifically.

Call me crazy, but I can't think of anything more fun than living in a tepee for a summer in one of the most beautiful places on earth. 

Wednesday, January 11, 2012

A big welcome to the newest member of our family! We hope to meet Serenity soon.

I wish we lived closer, but since we don't, I've been crocheting a blanket filled with love to wrap her up in (and it's finally done!)

Sending all our love, hugs and kisses!