Let Our Green Voices Shine

Our family blue Ford LTD drove in the school entrance. As my 6th-grade body leaned against a slender chocolate color pole. When the Ford circled the pickup lane, I stepped towards the edge of the curb. Mother’s hands gripped the stirring wheel as she drove us back to her workplace.

She parked and I grabbed my book bag. On one shoulder it draped as I walked in her workplace behind her. In the corner, I nested for a landing of homework while she finished a day's work.

In a swivel hairdresser chair across from mother’s station, her boss sat.

The week before mother told me, doctors diagnosed her boss with breast cancer. It was the first as a child my ears heard the words "cancer". My mind did not recognize the meaning. Until mother explained it the best she could.

We later left her workplace heading home for dinner with the family.

Months later, mother told us her boss fought the breast cancer leading into remission. Life carried on as usual. A short two years later, her cancer struck a second time. This time she peacefully lost her battle here on earth.

Since then, breast cancer awareness has grown and survival rates have increased.

Moving on years later, at the young at of 23, I was diagnosed with Fibrolamellar, a rare liver cancer. Of course mother’s boss was the first person I thought of and second death flashed in my face. My cancer was detected at an early stage during other medical concerns. Because of this, a resection was performed with no additional treatment and no reoccurrences -to date. This particular cancer is not usually found until it is too late. Meaning, once it has progressed, a liver resection is not a suggested treatment plan.

Fibrolamellar is one out of five types of liver cancer:

Hepatocellular carcinoma (HCC-hepatoma)

Fibrolamellar (rare type of HCC)

Cholangiocarcinoma (bile duct)

Angiosarcoma (blood vessels of the liver)

Secondary liver cancer (liver metastasis, spread from other parts of the body)

Fibrolamellar is common in teens and young adults. 1 in 5,000,000 are diagnosed with as little as 1,000 each year worldwide. Fibrolamellar was first detected in the early 1950’s and named by John Craig, MD. Dr. Craig currently is on the board of directors of the Fibrolamellar Foundation. So few are diagnosed most have not heard of it. Even in some towns medical personnel have not. Families have traveled far from home, even moved states, to seek treatment with doctors familiar with Fibrolamellar.

Most are not aware, Liver Cancer and Breast Cancer awareness both share the month of October. 

Each October the liver cancer community is a tiny crumb of green on a chopping block of pink. It is not about toning down the pink. More about spicing up the green letting others hear our voices too. There is no need for a green wash out of soup cans, mixers, etc. Yet, the acknowledgment, our lives matter too. Until our voices are heard, effective treatment plans and early detection plans will stay non-existing. I speak on behalf of all liver cancer types, there is more to life than “think pink”.

Because I am a member of a Fibrolamellar group, I witness others lose their battle. This year alone, we have lost the most from our small group. Husbands, wives, moms, dads and siblings say goodbye until eternity.

The scar etched between my breasts to my belly button is only a physical marking of my cancer journey. The emotional pain no matter if I cram it in the back cobwebby corner of my mind it still surfaces. It does not go away. Similar to if you lost a parent or a child, fought in a war, or suffered another type of traumatic event. It’s part of my life story. It reminds me to speak up. Not to turn a blind eye on you or me, nor our families -future generations. Even on the hard days, I do not want to share or days panic attacks from old emotions flare posttraumatic waves.

My dreaming passion is one day there will be better detection and treatment plans for all liver cancers. Just like there has been over the years for breast cancer and other types of cancers.

Therefore, I leave with you these words “think green,” “think liver cancer awareness” too this October. 

Let us fight for all. Honor. Support. Advocate.

Let us shine a ray of hope in the cancer community together. 

This October, banners like such, were hand created by Ashley for Facebook profiles.

Portions of this blog post were published earlier this month on ihadcancer.com

Join Ashley's silent art auction this month as she raises money for liver cancer research.

“You are the world’s seasoning, to make it tolerable. If you lose your flavor, what will happen to the world? And you yourselves will be thrown out and trampled underfoot as worthless. You are the world’s light—a city on a hill, glowing in the night for all to see. Don’t hide your light! Let it shine for all; let your good deeds glow for all to see, so that they will praise your heavenly Father. Matthew 5:13-16

On the way to Ferry

Donating anything brings new life.

I mean anything.

A N Y T H I N G

Holding tight to things no longer used clogs the system of giving.

Sunday, March 6, 2016, I did a routine scroll on my facebook newsfeed. This normally consists of two scrolls. Long enough seeing what others are doing. Since before Christmas, I pledged not to overspend my time on Facebook.

The first post I came upon that afternoon stopped me in my tracks. No need continue scrolling. A mother posted in a closed group, Tessa Fibrolamellar Journey, "the call came". For the past two years the mother, Dawn, posted updates in regards to her daughter on the liver transplant list. The family lives in Vancouver, Canada.

Canada to me is exciting enough!

Vancouver.

Yea, that's exciting.

Tessa's journey consisted of battling liver cancer, Fibrolamellar. The same type I battled 16 years ago. Tessa is a teen. Age 15. Her mother and I met in the closed group, Fibrolamellar of the World Unite, a couple years ago. One year, I drummed up individual blog post bringing awareness for the month of October. For "our" type of liver cancer. Dawn happily jumped on board sharing her daughter, Tessa's, story with me. Although, I've not had direct in-person contact with Dawn and her daughter, they were eager to share her story. That is one thing about the Fibro family. We stick together.

You can see the post from October 2014 HERE.

"THE CALL CAME. On our way to ferry!!!!!!!!!!!!"

My eyes bolted over to the comments. Reading everyone's comments was beautiful. Joyful. Encouraging. Praising. As I continued reading confirmation came. Several comments down someone ask if it was for a transplant. Dawn replied, "yes."

The most exciting three letters.

Y E S

Quickly, I screenshot the original post. When I posted the picture on my Instagram and Facebook page words of celebration indicated the powerful moment for this family. I even shared Tessa's story with each of my family members. Prayers. Stories like Tessa's you know is all God. His timing is perfect.

From there it was hours before the next update came.

At midnight, she was rolled to the E.R.

The next morning, I checked for an update. Things went as planned. Hours progress in recovery. Then ICU. The transplant was done. Just like that! Done.

Until, late Monday afternoon, Tessa's mother urgently updated. She was rushed back to the E.R. Test results showed the new liver wasn't functioning properly. Her blood was clotting. Her body was rejecting the new liver.  My heart began racing. As I am sure her mother's was. Being in the Fibrolamellar group for nearly 5 years now, I've seen every twisting story. Prayers relaxed me to a state of calmness.

The next time an update came in Dawn basically stated Tessa was placed on top national priority for a new (second) liver. Until then she was in a coma. Life support would carry her until a new liver was found. By midnight the update was a new liver transplant was underway. Already that fast, a new liver.

The next midnight Tessa was heading in the right direction. Early test, blood work, and a sonogram indicated this liver was a good match. The breathing tube came out. Bath in bed. Tessa even asked for her mascara. Afternoon, PT had her walking. WALKING.

Sister was on the road to recovery. Such a brave girl. She was soon moved out of ICU. A big plus.

I don't know if you've ever been in ICU personally. I have. It's the loneliest place a person can be. Her mother even stated nights in ICU were hard on Tessa. She was anxious at night.

This past week, 15 days into her new liver, Tessa was discharged from the hospital.

Tessa and her mother will stay in a YANA apartment while she visits the hospital weekly for regular check-ups.

Tessa story is so inspiring. She kicked liver cancer to the curb.
(Update: since starting the writing process of this blog post Tessa's back in the hospital. She had a great Easter weekend with family. Then became ill. A few minor problems are being worked through. She is a fighter. This goes to show having a transplant isn't an easy task at all making her story even more encouraging. Here's the message I left for her: Please tell her she is a true hero. Brave. Strong. Courageous. Young. Lady. Who will overcome each step of this to tell the world what she has endured and lives will be changed one by one by her strength. She is an amazing trooper. My heart goes out to her. Lifting her up in the most encouraging way. Cheering. My. Tessa. On!!!!! #mighty #healer #strong #powerful)

Please pray with me as her and her family wait patiently as her body adjust to her new liver.

In honor of her, I'd like to ask everyone to be an organ donor. It's easy. Save a life.

Not sure what to do. Watch this video. Click here.

Donate today! 

Wednesday Words

Welcome to Wednesday Words here at Ashley's Art Closet. I heart Wednesday Words! I never really know where it's going to take us. Today, I have Tania from Standish, Maine with us. Tania is going to share insight into her personal recently short journey of liver cancer honoring Liver Cancer Awareness month. October is almost over people, let's rock this out by welcoming Tania, I am so glad you are with us. It means a lot to me and others you took the time today to share with us your story. Go green! 

Briefly, share with us what life was like before cancer. 

I am a 32 year old wife and mother of 2.  We were married on August 27, 2005.  Our oldest daughter Paige Rose was born on August 8, 2006, and our youngest Caitlyn Renee was born May 5, 2008.   I was/am self-employed, I own Tania’s Tots Preschool and have been in business for 9 years.  I have a bachelors degree in Early Childhood Special Education. I love teaching. I opened my business September 5, 2005, the day after we returned from our honeymoon in a 250 square foot room and have since expanded to a 1350 square foot building with 2 classrooms and 2 other teachers. 

Share with us how you found out.  What were your symptoms?

In March of 2012, my best friend and I decided that we were going to start running.  We were both turning 30, had kiddos and wanted to get into shape.  We started training for a 5k and were running 3-4 days a week.  It was exhausting.  I couldn’t figure out why I couldn’t build up my endurance. We attributed it to working in the preschool 50-60 hours a week, being a busy mom and the running.  I completed my 1^st 5k but was experiencing shortness of breath and shoulder pain.  One night a few of us went out to dinner and I felt a pop in my side, a few hours later I was in pain.  I honestly thought it was my gallbladder.  I spent 2 days in bed taking Tylenol and Advil around the clock.  Monday morning I had reached my breaking point.  We put our oldest on the school bus and my husband drove me to the emergency room.  It was our 7^th Anniversary, and we were spending the day in the ER.  A technician came in to complete an ultrasound and the look on his face told me there was a BIG problem.  15 minutes later my room was full of doctors and nurses.  They told me I had a “hepatic adenoma” and it had ruptured bleeding into my liver.  They admitted me to the hospital and the next day they performed an embolization to stop the building.  I spent 2 more days in the hospital and was released.  I was set up with Dr. Lisa Rutstein surgical liver oncologist.  She monitored the adenoma by MRI every 90 days then we would meet.  In April 2014, 20 months after the rupture we decided to do a resection to remove the tumor.  I set sub plans for the summer for my preschool and prepared for surgery.  The resection was on Wednesday, June 11^th.  The resection went well and within 5 days I was home.  The day after I came home I logged into my computer to read my charts and saw my pathology report.  The first words I saw were “findings, Fibrolamellar Hepatacellular Carcinoma.”  It was not an adenoma.  I instantly cried and got on the internet and began the investigation process.  The next day I called my surgeon and we had a meeting to develop a plan.  She told me she needed to do a 2^nd resection to clear the margins and remove a section of my diaphragm.  I told her to schedule it asap.  So on July 2, 2014, exactly 21 days after the first resection I had a 2^nd larger resection.  Again within 5 days I was home.  The 2^nd recovery was much harder and even as I write this in October 2014 I am not 100% back to being me.   Hearing/Seeing the word cancer was terrifying.  I am mom of 2 girls…they need their mom…I knew that this was going to be a fight.  I will not go down without trying everything possible. 

What has your course of treatment been?

Currently, I have had the 2 resections and a post resection MRI.  Everything has come back clear.  I am taking a “holistic” approach.  Eating as clean as possible, raw honey and cinnamon, green tea, a few cups of coffee a day, etc.

Emotionally, how have you handled everything?

I am a FIGHTER.  I always have been.  I am a feisty, do not mess we with kind of person.  I am also determined to know everything I can about this form of cancer.  I will educate myself and everyone I know.  I am going to take a proactive approach and try to keep it at bay. If I can’t keep it at bay I will fight it every step of the way.

Tell us what have you learned throughout this process?

This is a new journey, but I have learned that there is a great support group through Facebook, Fibrolamellars of the World Unite. I have learned that I am stronger than I thought I could be.  I know that there are no guarantees in life and that you have to enjoy every moment.  I think it is very helpful that my surgeon was willing to fight for me too.  She didn’t lose hope or tell me that it was impossible she was willing to take a risk and do 2 surgeries back to back to give me the greatest chance I had.  

Tania thank you so much for being with us today. I am completely honored to share your story. I pray many, many blessings on you and your family. I look forward to staying in touch with your throughout the rest of your journey so we can continue to celebrate…free, free, free! I like that you're a fighter! I like that you're taking a holistic approach to all this, healthy eating! We must all embark on eating healthier, not just because we want to diet, rather it's the healthier route for our precious bodies.

DIY Tuesday Interview

This weeks DIY Tuesday Interview brings me Lisa Schuler, Brandon's step mom. Lisa live in Kentucky. She brings great insight to what it's been like since she married Brandon's dad. 

We learned last week , Tuesday's are usually my DIY day here on Ashley's Art Closet. So what better way than to carry that tradition out even though we are in the middle of Liver Cancer Awareness month. Mainly to continue bringing awareness to others but also in the hopes to encourage others to step out honoring other cancer related people. Possibly having the courage to interview them. I truly believe the more we connect, the safer we will be having peace knowing we truly aren't alone in this thing called life. Each story shared brings awareness which in return paves a path for others. 

So, I encourage you to interview cancer relate people. Or simple anyone for that matter. 

It's simple 

What you will need:

a willing person

mother/step mom who's child is currently battling cancer

a picture of them 

a picture of their support

pen & paper

a list of in-depth questions

strength 

courage

a computer

a blog

a praying heart

a listening ear

a moment of thanks 

Lisa start by telling us, what was life like before cancer?

This is has been the toughest question for

me. It's hard to remember what my life was like before (CANCER) moved in. When Brandon's Dad and I married, Brandon was 13 years old. His dad had custody of him. I was excited I would have him in my life. He's always been a blessing to me. I had a daughter from my first marriage. I have never thought of him as a (step) child. He has always felt like my child and always will.

How did you find out about Brandon's diagnosis? 

It was 4th of July weekend 2010. Brandon complained about pain in his abdomen that ran thru his back. After 2 trips to urgent care and 1 trip to ER, The ER Dr. finally ordered an X-ray and MRI which showed a large mass in his liver. The Dr. recommended we go to a larger hospital so we loaded up and went. After a roller coaster of a ride, we finally found out it was tumors. They did a biopsy of pancreas Thinking first it was pancreatic cancer. We followed up with an oncologist who ordered a biopsy of the liver. This is when FHC entered our lives.

Lisa share his course of treatment.

All along we have been told surgery isn't an option. He was started on Nexavar. After 5-6 days he had a severe allergic reaction. So he was taken off  of Nexavar. 5FU and interferon was used next with good results, he stayed on that for awhile. Then he was giving Xeloda for some time. Currently, he is taking Tarceva and Avastin infusions. He has had 5 embolizations. He gets CT Scans every 3 months. He recently was hospitalized due to bleeding ulcers.

Emotionally how did your family and yourself handle the diagnosis? 

Another tough question, It's constantly a roller coaster ride. BTW I have never enjoyed roller coasters! It is a full time job keeping up with his medicines and appointments. All the medical bills (when he was first diagnosised he didn't have health insurance) He now has medicare but it only covers 80%. All my vacation and sick time at work for the last 4 years is spent on Dr. visits and hospital stays. There hasn't been a day that (cancer) hasn't been involved since 7-15-2010.

Tell us what you have learned along this journey.

I have learned a lot about myself and about other people. You never know what someone is going thru so be nice to everyone, even if they aren't nice to you. I don't worry so much about the little things, I don't let things at work bother me the way they use to, cause at the end of the day that stuff doesn't matter. I am Brandon's primary caregiver, I get a lot of comments, I have never understood. It seems some people think its odd that I do so much for him, but like I said he has never been a (step) child to me. He is my son. I will do anything and everything I can for him. I get kinda offended when people (thank me)??? Never ever take anything for granted!!

Lisa, Lisa, Lisa.... Thank you, thank you for being you. Thank you for being a true example of a step mom. Thank you for being a true caregiver. All in all I hope those thank you's don't "offend you". Actually, you shouldn't be offend at all you deserve to be honored in the role you play in Brandon's life. Serving others is what we do best, it's what God intended for us to do. 

And do not forget to do good and to share with others, for with such sacrifices God is pleased. Hebrews 13:16

Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, Colossians 3:23

But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15:7 (I really have to be reminded of this one, especially fighting that voice… why are you interviewing so many cancer related people)

Lisa, I've know you through the Facebook group, Fibrolamellars of the World Unite, for a few years now but I have to say I've enjoyed getting on more of a personal level getting to know you and Brandon's story. I hope other's feel the connection as well. 

I thank God for putting you in Brandon's life. As well, I thank Him for allowing you and I to cross pathes. Giving Him all the glory…

I pray for true healing for this young man.

Brandon Schuler 

You can visit him on caringbridge.com to see more of his story. 

brandonschuler@caringbridge.org

Tracy's Thursday

(Tracy-liver cancer survivor-Minnesota)

(Cupcakes from Tracy's 3 year survivor party)

Only thing green here today on the blog is green for honoring Tracy O. from Minnesota. Tracy is pushing towards being a 4 year liver cancer survivor. She joins us sharing her story this October day for Liver Cancer Awareness month. Usually on Thursdays, I share the green turtles who reside here at The Murphy Lodge, Thursday Turtles. 

Tracy start by sharing with us what life was like before cancer ?

When I was diagnosed with cancer I had been married to my husband, Jon, for almost 8 years. Our daughter, Lesley, was 5 years old at the time. I am nurse and received the phone call with my biopsy results telling me I had fibrolamellar hepatocellular  carcinoma while at work.

How did your work family handle your diagnosis?

My work family had been walking beside me the few weeks leading up to this and I am forever grateful for their support. Their support continued as I went through my liver resection and was off work for the next 6 weeks. They blessed our family with food, treasures for Lesley, and monetarily. I will never forget their support.

How did you find out? What were your symptoms?

I had been having a work up for some side pain for about 6 months before my diagnosis on April 27th 2011. I ended up in the ER on April 12th due to the side pain being so severe. The doctor thought for sure it was my gallbladder causing the issues but after the CT they ruled that out. He sent me home with pain meds and that was the end of that. The next day I got a call from the ER that the radiologist read it as a "spot" on my liver and I should follow up with my regular MD. So the following day I had an ultrasound, which was still too general so I had an MRI the following day, the 15th, and got the results within an hour that I had a mass in my liver. All the testing happened very fast for me which led to a quick diagnoses.  That is all in all a great thing.  I was referred to a liver specialist. On April 21st I saw the liver specialist and he said that a biopsy was needed along with some blood work to check tumor markers. The tumor markers were negative and I was scheduled for my biopsy the following Tuesday the 26th. 

Tell us a little more about the day you received the call at work.

My phone rang at work on the 27th and I got the news that has changed my life, that it was fibrolamellar hepatocellular carcinoma. I was so lucky to be scheduled with the liver transplant specialist and liver surgeon the following day. Both were incredible, kind doctors. Both of them agreed that a liver resection was the way to go and I was scheduled for surgery on May 2nd. 

What type of treatment did you receive? 

The liver resection is the only treatment I have had. They ended up taking the tumor with 30% of my liver and 7 lymph nodes.  All lymph nodes and margins were negative. The tumor was 10x9cm.  I found out my tumor was mostly stage 1, only mentioning of stage 2 because of the size.  
I was off work for about 6 weeks. No chemotherapy or radiation was needed.  

You mentioned to me your moms help, explain…

During that time my mom helped to take care of me so that Jon could go back to work.  I knew my mom was the best before all this happened but God truly blessed me when he gave her to me as my mom.   

Emotionally how did you handle everything?

Things didn't really "set in" that I had cancer and was a survivor until about 3 weeks after my liver resection.  I then began to deal with a great deal of anxiety.  I still deal with "scanxiety" when my scans draw near, as I still get them every 6 months, and will continue with the every 6 month plan for several more years. 

Tell us what you have learned along this journey?

Being diagnosed with cancer at the age of 28 was very difficult.  Young adult cancers and the kind of cancer I had are both rare.  At the age of 28 you don't expect to be dealing with things that come along with being a cancer patient.  Your suppose to be raising your family and enjoying life.  I know try and slow down and every single day find something I'm blessed with.  Life has a whole new meaning to me than it did 3.5 years ago.  You can't take a single thing for granted and you have to tell people you love them. 

Tracy how did you find the Fibrolamellars of the World Unite Facebook group?

I was searching online for anything I could find to do with fibrolamellar.  On the American Cancer Society website I dug and dug and ended up finding Casey who was already a member of the fibrolamellar group on Facebook. She connected me with Tal, the founder of the group, and I became part of the group in summer of 2011.

Might I add, the Fibrolamellar of the World Unite group is where you and I met just after you joined. I've noticed you've had some involvement more in depth with the group, share with us a little more about that.

After I had been an active member of the group for about 2 years I was asked to be an administrator.  As an administrator, I welcome new members and try to connect them with someone if I know they have a "similar" story, if they are located close to someone, or just take the time to listen.

Also, I've noticed your fundraising for The Fibrolamellar Cancer Foundation, share about that. 

I have done 2 different fundraisers for The Fibrolamellar Cancer Foundation.  I sold t-shirts last year and this year I am selling coffee as part of October being Liver Cancer Awareness month. 

I saw you recently went to Vermont tell me about that. 

I have been blessed with going to the family gathering for fibrolamellar patients and their families for the last 2 years.  This has been held at the Trout Lodge in Stowe, VT.  It is hard to explain in words how much those 2 weekends have impacted my life.  Meeting others going through this journey, meeting families of fibrolamellar patients that have passed... being a face of hope.  I do struggle with survivors guilt but those parents that I have met, have made me feel so loved.  Shout out to Martha Ann and Harry! 

Lastly, I know your family has not only been touched by cancer with you but also your father tell me about that. 

I was exactly 18 months into my journey when my dad was diagnosed with stage 4 metastatic lung cancer.  His battle only lasted 3 months.  As hard as this was on me, it brought up some really hard questions from my daughter.  Like "mom, is your cancer going to come back?  Will you die from cancer mom?"  No 7 year old should have to know stuff like this.  I will fight on every day… knowing I will continue to beat this for my dad!

(Tracy and her family) 

(Tracy's trip to Vermont this year with the Fibrolamellar Cancer Foundation)

Tracy, I can't thank you enough for taking the time to pour out your precious heart. Meeting you just months after your surgery has brought us through a lot together. We have coached each other along the way, cheered others on, watch many of our friends gain their angel wings and you've read my book allowing your soul to know me on a deeper level. All those things have brought us so closely together. I know I can reach to you anytime. Not only or we survivor sister but we are sisters in Christ. We shall meet in person one day when you come to Mississippi, lol!   I seriously thank God for your journey and will continue to pray for clean scans for you sweet girl. Giving Him all the glory knowing we shall seek His face through it all especially "scanxiety".

Wednesday Words

Another beautiful day to seek the heart of a family honoring them this October for Liver Cancer Awareness month. Walk along side me today as we read Wednesday Words of another mother's story of her daughter battling liver cancer. 

Mrs. Mueller please share with us how your daughters journey with liver cancer begin and where y'all are today. 

Our journey began on February 13, 2010.  My daughter had lived in Colorado at that time for about 10 years and called Fort Collins her home.  We received a phone call that changed our life.  Her boss informed us that she was in the hospital and about to undergo emergency surgery.  A tumor the size of a cantaloupe had burst on her liver and she was bleeding internally.  She had lost about ½ of her blood into her abdomen.  She coded and they brought her back.  She underwent a procedure that would plug the liver and stop the bleeding.  The surgery was stopped at that point to stabilize her and the next part of the surgery would be done 3 days later.  

We rushed to Colorado from Illinois to find our daughter alive but very critical in the ICU.  She had another surgery 3 days later to resect the portion of the liver that was damaged and remove the tumor.  At the time they believed it to be a benign adenoma (noncancerous tumor). After sending the sample to 5 different labs the results came back Fibrolamellar Hepatecellular Carcinoma.  

No one wants to hear that their child has cancer.  She was 28 at the time.  We mourned and cried then the time came to fight.  She wasn’t ready to give up and wanted to pursue every avenue possible.  We got in touch with MD Anderson hospital and went for a consultation.  The recommendation was that she go through another surgery to clean up the margin and check the surrounding lymph nodes for possible FHC.  That surgery came out very well and clean margins and lymph nodes.  They did inform us that because the original tumor burst that cancer cells had spread through her body and could pop up anywhere.  She was put through a course of chemo to possibly help.  

A year later 2 small tumors surfaced in some fatty tissue in her stomach and were removed.  She went through some localized radiation.  We were hopeful that there would be no more recurrences, however, a year after the last surgery another tumor was found and grew from 2.5 cm to 8 cm in one month then another tumor next to that one was found.  It was decided that these tumors were too close to the hepatic artery to be removed safely so it was decided that chemo immobilization be done to possibly slow or stop the growth of the tumors.  The large one was immobilized first and after 5 procedures both tumors showed to have been reduced in size and after several months a scan showed that they were dying.  During this time another tumor was found to be coming off the cut end of the liver and possibly growing on the stomach, it was decided in October of 2013 that another surgery was necessary.  The concern at this time was that the tumor was coming off the stomach which would make her ineligible for transplant.  The wait was agonizing, worrying and wondering.  The doctor came out and told us the good news that the tumor was coming off the liver and was removed with a clean margin.  By this surgery she only had the right lobe of the liver left.  

So a year later we are waiting on the transplant list with 9 months of clean scans behind us.  Claire must take the pill form of chemo while waiting, but has a great quality of life still and a wonderful outlook.  We are getting close to transplant because of her type of cancer puts her higher on the list.  We still live scan by scan but are hopeful for a great outcome and a long and happy life.  We as a family are very supportive and would do anything we can.  This has not been an easy battle but we continue to fight and will fight with every ounce of strength we have.  

My daughter is not married but is the proud aunt to a 14 month old boy and a sister to my other daughter and son.  She is an excellent example of strength and courage.  The family pastor once said he wished he could bottle up her strength and give it to those who he meets with.  She always has a smile and an encouraging word for anyone.  

Her favorite words and truly words to live by. You gain strength, courage and confidence by each experience in which you really stop to look fear in the face.  You are able to say to yourself, “I have lived through this horror.  I can take the next thing that comes along.” Eleanor Roosevelt

The Mueller Family
Illinois 

Thanks to each of you from the Mueller family, as your heart has been opened up to share such a long journey. I know your open heart will provide such peace and understanding for other to see and hear what it's like to be of a family who's walk out the journey of cancer, mostly liver cancer. May many more bright days be ahead for your family. It's been a true honor to get to know you through this process of your story being shared. I'll continue to pray for each of you for God's ultimate healing. I love the strength shown here of your daughters. Let's shout to the mountain tops sharing her story of His true goodness. #givinghimalltheglory 

Check is in the MAIL

After calculating my portion-of-proceeds
in my first year of books sales, I mailed a check
today to the http://www.fibrofoundation.org/.

If you have written a book you know
the profit can be slim by the time
you pay for everything on your end
to make it happen! Well unless you
sale a trillion.

So even though my check might be
small in my eyes, it's really big
in my heart knowing I did my part!

Fibrolamellar Cancer Foundation

I am honored to share with you
I am one of the faces of fibrolamellar
on the Fibrolamellar Cancer Foundation website.

This Foundation was founded by Tucker Davis in 2008
with the hope to raise awareness of FHC-Fibrolamellar
Hepatocellular Carcinoma-liver cancer
and possibly find a cure. As a very passionate person
about this rare cancer, Tucker lost his battle early last year!

His family and friends are
carrying out his wish to find better treatment,
find answers, find a CURE!!! Although I didn't ever
personally speak with Tucker, I was aware of his foundation
when I was contacted by his girlfriend.

What I am really happy to share with you is a portion of proceeds
from the first year sales of my book, Daddy's Briefcase
will be donated to Fibrolamellar Cancer Foundation. Just like Tucker,
I've been very passionate about finding answers for this rare cancer...
it's my hopes that my small donation from the book sales
will do great things to carry on this foundation.

The Fibrolamellar Cancer Foundation features
The Foundation :What We Believe, Who We Are
Tucker's Story: Tucker's Message, Tucker's Diagnosis and Treatment, A Mother's Story
Understanding Fibrolamellar
Research: Current FCF Research Project
Patients and Families: Get Help and Support, Faces of Fibrolamellar, Keep on Tuckin', Share Your Story
Ways To Help
and more...

I want to give a big shout out to those behind the
Fibrolamellar Cancer Foundation.
What an outstanding job to carry out
Tucker's legacy...the FHC community needs you! This
is the most FHC activity, other than the facebook group,
Fibrolamellars of the World Unite,
I have see and been apart of, Thank You!

I've dreamed for along time for something like this, Fibrolamellar Cancer Foundation! In a weird twisted way,
I am honored to be one of the faces...
to help make a difference!!!

Actual day of diagnosis...

Today actually is the day I was diagnosed,
March 28, TODAY is the day.... nine years ago!
was when testing started...

So, a whole week of test,
the unknown!

Thinking of a friend today...

In 2000 when I was diagnosed with FHC,
I longed to find other cancer related people,
that's like me saying I want someone to have cancer...WRONG!

Unfortunately at that time no one was to be found.

I was completely ALONE!

Springish, Summerish of 2008,
coming open with the writing of my cancer journey,
I begin to meet others who have been touched by FHC,
cancer period, for that matter. Long past what I thought
was the end of my healing process...
connecting with others help feel the void,
the void I longed for, for so long!

Amazingly, I found a hand full of FHC peeps.

Today one of those special peeps
is under going some additional treatment.
It is in my heart she will have a full and fast recovery!

She is a true angel! A fighter... her motto is
"Learn from yesterday, live for today, hope for tomorrow..."
I call her my little FHC sister...!

ashley:)

*WELCOME*

To my blog,
Blog a verse...from Ashley's art closet.

A place to share photography, writing and paintings.

You will find more times
often than not
my writing in verse form.
NOT POETRY!

I do not like poetry.

I remember as a small child
writing like so but couldn't make
much sense of it.

Last year I found
actual authors who write in verse as well.
So maybe I am not crazy after all!
Ask who they are and I will tell.

Spell check is my best friend,
grammar and punctuation are not.
I don't like to read,
but I am writing a book!

The year 2000, at the age of 23, I was diagnosed
with a rare form of liver cancer,
Fibrolamellar Hepatocellular Carcinoma (FHC).
After a long intense battle, in 2005 I was set FREE,
cleared by my doctor, this is when my writing begin,
to share my story in hopes of helping others as they heal.

So come on in take alook around.
Hopefully you will enjoy yourself,
leaving inspired with what I have to offer.

I will have guest bloggers from time to time,
let me know if you would like to be one of them.
If not check back to see who visits.

Please feel free to leave comments,
by the dozen!

hugs to all ... from a hugless person,
ashley :)