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

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