We Choose Life

I know many of you have been wondering - the cancer is back, now what?  

The fact is, I’ve been through such an overwhelming mix of emotions in the past several weeks that I haven’t wanted to talk about “the now what” with anyone except for close friends and family. Now, however, I’m feeling like it is time to let others who care about Lily and our family know what we have been going through.

We didn’t fully realize until recently what a dire sentence relapsed alveolar rhabdomyosarcoma was.  We didn’t learn until after the cancer had come back that conventional doctors see themselves as really only having “one shot” at this type of cancer- the “one shot” being the aggressive yearlong chemotherapy regimen that Lily already went through.  When she finished chemotherapy, we were really made to feel like everything would be fine and that the treatment had worked. Now we realize just how naive and misinformed we were. We are learning that for stage IV cancer, chemotherapy rarely keeps the cancer from returning and that because almost every type of chemotherapy was used in her last treatment, this new tumor is now resistant to those drugs. Additionally, some of the chemotherapy drugs- like Doxorubicin- have lifetime allowable limits, and Lily has already been given that limit.

When we met with Lily’s oncologist, he laid out 3 treatment plan options:

1.       More aggressive IV chemotherapy and radiation. 

Lily would be given 10 courses of 3 chemotherapy drugs.  One of the drugs is an experimental drug called Bevacizumab that does not allow your body to build blood vessels.  The side effects of this drug are things like holes in the stomach and internal bleeding.  Lily would only receive radiation if the radiologist felt that he could radiate the tumor without harming her heart or other organs. For this treatment plan, the doctor would be following a study protocol with a success rate of less than 10%. According to statistical data, the chance that the cancer would stay away for over 5 years is 3%.

Almost unbelievably, this is the treatment her oncologist recommended to us. He felt that she “tolerated” chemo and radiation so well the first time that this could be her best bet. This is even as he emphasized that the cancer would likely come back.  He also actually encouraged us to get treatment in Tennessee so that she wouldn’t just be following the study protocol, but would be on the study and would be “helping other kids.”

In other words:  there is really very little hope, so let’s turn your daughter into a guinea pig so doctors can test out their poison on her and then at least her life won’t have been in vain.

Please forgive my selfishness, but I refuse to inflict extra suffering on my child in order to benefit the Big Business of Cancer.

2.       Middle of the road.

Lily would take 2 different chemotherapies at home in pill form.  She would have to stay on this treatment indefinitely. In other words, it’s not curative. This option could possibly buy us a few years and Lily would be on the treatment until it became obvious that it was doing more harm than good. The doctors see the tumor as being resistant to therapy because they already used these drugs this past year. This treatment would just be more of the same and while it may shrink the tumor, it would not cure her.

3.       Pain management and parental care.

The fact that they offered this option at all really highlighted for me how hopeless the doctors see the other treatment plans they offered. If they don’t see more chemotherapy as helpful, then why would I subject her to that?

In the past few weeks, we have been to see 4 other doctors and left each office just as discouraged and confused as when we spoke to Lily’s main oncologist.

The doctor from Cardon’s Children’s Center recommended the intensive chemo, radiation, AND surgery if he could find a surgeon willing to do it. The reason he might not be able to is because of the location of the tumor (in Lily’s chest, up against her spine) and the fact is that they wouldn’t be able to remove all the cancer.

We also talked to a doctor at Envita Medical Center in Scottsdale (not covered by insurance), who’s alternative treatment plan would cost us up to $125,000. 

As we thought over each of the options available to us, I could see nothing but fear and the specter of death in each of them and I wanted to scream, “I choose life!” In fact, in moments of clarity (those times when I am not consumed by panic), I see this as the only logical choice.

By choosing life, I mean living life to the fullest and making choices that support life- not destroy it.  None of us know when we are going to die. I sincerely believe that violently struggling for life until the very end is not the way to live or die; nor is taking drugs that diminish and slowly drain life and are often just as deadly as cancer itself.

More than anything, this past year has taught me acceptance. And it truly is the ONLY way to peace and happiness, regardless of circumstances.  Acceptance definitely does NOT mean rolling over, giving up, or losing hope. In fact, acceptance is nothing if not empowering. It allows you to perceive the situation without fear or anger; things become more clear and simple.

Why do we fear death in our society? I’ve had to look long and hard at this question. For me, losing a loved one isn’t about fear of the unknown. I don’t fear death in that sense. It is the pain and sadness that comes from not physically being with that person. It is the dissolution of all dreams and hopes regarding them, especially when it is someone so young who still has so much to live for.

No parent should have to think about this, and yet, I’ve had to accept that this is something that could happen, as indescribably heart wrenching as it is to think about losing my girl- my sweet daughter that I wanted so badly and was so lucky enough to have.

I’m still working on it, but I know that this acceptance helps to dispel fear and gives me the strength and clarity to make the right decisions. Since we found out about the new tumor, we have made some extreme lifestyle changes. We have cut out all foods except for organic fruits and vegetables and some organic grains. And we have been juicing fresh organic produce every hour of the day.  This vegan, wheat free, salt free, sugar free, process free diet is intended to help nourish and detoxify Lily’s body.   Ironically, this “treatment” is MUCH more difficult than going to get plugged in at the doctor’s office or taking a pill.

But I have faith in the body’s ability to heal itself and in the medicine of nature. We need to give Lily the chance to heal naturally, something we didn’t do enough of this past year.  This is with full knowledge that one’s healing journey doesn’t always end with one overcoming their disease. Genuine healing involves much more than that. It is also something that affects and inspires whoever comes into contact with that person. Nonetheless, this path provides more hope and comfort than going down the same “dead end” road of cutting, burning and poisoning the body in the hope that it kills the cancer and not the patient.

These are not new sentiments for me. Although we did go with conventional medicine in the beginning, it was due more to ignorance and fear more than anything. Our experiences in the past year only exposed me again and again to just how much doctors in this field have distanced themselves from the mind- body connection, the importance of nourishing the body, and the medicine of healing the whole person.  This is particularly true for pediatric cancer patients.

So what now? Well, we are currently following the Gerson Therapy. Lily has had multiple blood tests by the doctors at Envita and we will be able to find out what supplementation would most benefit her. We will use some alternative treatments such as high dose vitamin C IV therapy to help boost her immune system.  We will also look more closely at some other immunotherapy treatments available to us, although most are extremely expensive and not covered by insurance.

I will continue to seek out information. This Gerson therapy is a full time job, but hopefully it will get easier as we get more used to it. I will be starting back at work this week.

Meanwhile, Lily has been feeling just fine. She has no pain or other symptoms of the tumor and is full of energy. She’s been playing with her friends, swimming, dancing, and creating art, as usual. She has still been going to weekly reiki sessions and has agreed to see if she likes yoga therapy.  

She was disappointed that we had to cancel our fun filled, tepee dwelling summer vacation in Idaho, but we still might take a short trip somewhere where we can juice. Lily also has her playhouse to look forward to. Make a Wish will have it built in our backyard mid- August.

Simple Pleasures

Finding fun and many things to be thankful for this summer despite heartbreaking news.

We've had to stay close to home because Lily's juice has to be freshly made every hour.

Mammoth Sunflowers; one of my favorites

Our backyard's a-blooming even in the summer heat

Lovey, our love bug- she's so sweet

A very bountiful apple tree; a great blessing

♫ millions of peaches ♫ peaches for free ♫

We've been able to use lots of organic produce and herbs from my garden. Every morning I pick 8- 10 apples for that day's juice and in the last 4 weeks we have only bought apples a few times just to change up the taste of the juice.

Homemade tomato sauce over spaghetti squash. Lily actually liked this dinner.

It's hard to make things flavorful without salt and once you stop using it you realize how much of what we eat is saturated with it. Even though I rarely sprinkled salt directly on our food, I used canned tomatoes, vegetable broths, butter, cheese, etc. that are all full of salt!

Our chickens have free range of the yard, great for fertilizing and pest control. Not so great for their favorite garden treat- my swiss chard. We've been somewhat successful keeping a net over some of our vegetables.

I'm thankful for these beauties even though our current vegan diet excludes eggs.

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.

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.

Oh Happy Spring!

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

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

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.

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.

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 :)

 

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.

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.

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!

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.