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 

What I heard from a mother

(Jamie-picture provided by her mother)

As most of you know, I am very passionate about liver cancer awareness. Since October is liver cancer awareness month, I've set out to interview a few families about their journey with liver cancer. As I myself, a 14 year liver cancer survivor, this is a true means of me giving back. Today I have with me a mother, Sarah, from Colorado. Sarah's agreed to speaking with us in regards to her daughters journey with liver cancer.  

Interview with Sarah Crook mother of Jamie Crook from Colorado

 Sarah share a little with us what life was like before your daughters cancer diagnosis.

 My husband, Brad and I have two boys, Will - 11, Ryan - 5 and one girl, Jamie - 9.  Jamie is our middle child.  I was and still am a stay at home mom.  Before Jamie got sick she was a very happy and healthy 6 year old.  Out of my 3 kids she was the healthiest, almost never getting sick.  She was in first grade and active in dance and gymnastics.  Looking back, she wasn't growing much and had a very small appetite.  But at the time we didn't realize the significance.

Sarah share with us Jamie's symptoms and how she was diagnosed.

 In January of 2012, Jamie started complaining of intermittent stomach pain and nausea but it would pass in about 20 minutes.  Being a small child we didn't take it very seriously until it started to affect her activities.  At the end of February she got extremely itchy, to the point where she started drawing blood.  Thinking it was an allergic reaction, we took her to urgent care.  They assumed it was just a reaction to a virus.  They noticed her stomach area felt swollen and told us she was impacted and that we should give her laxatives.  I knew she was pretty regular so I never gave her the laxatives.  The itchiness continued for a week until we noticed that Saturday that her eyes looked yellow.  Putting together pain, itchiness and jaundice we assumed something was wrong with her liver and took her to the hospital.  We spent the day getting tests done and they told us it was just a reaction to a virus and we should go home and resume normal activity.  By this time her entire body was yellow and very itchy.  They said her bilirubin and white count were elevated and her liver and spleen were enlarged but they weren't concerned.  None of this sat well with me so I called an acquaintance who was a pediatric GI at Children's Hospital Colorado and read him the lab results over the phone. He completely disagreed with the first hospital and made an appointment for us to see the liver specialist at Children's that Monday, March 12th.  She had a ultrasound and could see something in there so they sent us for a CT scan.  They came out and told us it was most likely cancer, they were admitting us and scheduling her for a biopsy the next day.

Sarah share with us about Jamie's course of treatment. 

On Tuesday, Jamie went in for her first surgery.  Since the liver is so far back they had to open her up.  The surgery took 3 hours and they found a lemon size tumor in the left lobe of her liver as well as in the main bile duct (the reason for the jaundice and why we caught the cancer early).  They removed the bile duct tumor for diagnosis.  She came out of that surgery with an epidural, catheter and a collapsed lung.  She spent several days on oxygen until her lung reinflated.  After 2 days they told us it was FHC and that our best hope was to do a complete resection. We had several CT scans, PET scans and bone scans to try and determine if the cancer had spread.  Everything looked pretty contained.  They gave her a week to recover plus consult with other hospitals to create the best surgical treatment.  A week later she went in for her 2nd surgery.  This one was 6 hours long and required 2 blood transfusions.  They removed the left lobe of her liver, her left bile duct, her main bile duct and her gallbladder.  They re-routed her intestines to her right bile duct. They also removed some lymph nodes for testing. She came out of this surgery with an epidural, catheter, NG tube, 2 bile drains and a central line because her veins had started collapsing.  On March 22nd, they came back with the results that the cancer had not spread to her lymph nodes and they considered her officially clear.  We went home the following Sunday and it took her about 2 months to fully recover physically.  

What about follow up appointments?

Jamie had a surgical follow up 2 weeks later and had CT scans and clinic visits every 3 months for the first year and every 4 months for the 2nd year.  In our 3rd year, our oncologist was concerned about the radiation exposure from the CT scan and switched us to MRI's and a chest x-ray every 4 months.  

 How did your insurance respond to this type of treatment?

Insurance covered everything but our deductible, about $5000, the year she was in the hospital.  However, once things started over the following January, we had to pay a $500 and then 20% every time she got scanned.  This usually amounts to about $2000 every few months before starting again.

 Emotionally, Sarah how did your family and yourself handle Jamie's diagnosis?

My husband and I were totally devastated when they came out and said cancer.  Never in a million years had we considered the possibility.  We tried to stay upbeat for Jamie throughout our time in the hospital.  I thought I had hid all of my crying spells from her but she told me later that she knew.  Jamie mostly shut down.  She's a very happy girl but as time went on she stopped interracting with friends and visitors.  She would sometimes start crying and saying she wanted to go home and dance again or be with her friends.  She was very shy and quiet for the months following our hospital stay.  She returned to fairly normal behavior by the summer but continued to have nightmares for a full year.  Her old brother was afraid he would catch cancer and then was afraid he would lose his sister.  Her younger brother slept on his mattress in our room for the next 2 months until he felt safe enough to return to his room.  

 Share with us what you have learned along this journey: what it's been like, how's life now, being a part of a cancer group, supporting awareness. 

Over the long term we try and stay very positive.  We are very involved in pediatric cancer awareness. We have gotten to know the pediatric cancer community fairly well because it is so small and we tend to all go to the same events.  We try and support each other as much as possible.  Of course, there is no other child in the state with this disease so we only have the online support group, Fibrolamellars of the World Unite, to connect with.  It was a huge relief to be connected with the Facebook support group, as prior to that we felt completely alone.  Jamie goes to lots of cool camps and is currently an ambassador for Children's Hospital Colorado.  We all have our moments of fear and breakdowns but mostly we try to enjoy each day for what it is because we know we can't predict when everything may change again.  

What would you say to a newly diagnosed family/person?

 I would just offer support and love. I no longer believe in telling anyone it will be fine but I can give you my wealth of experience and connections for information and treatment.  I try to listen and offer as much understanding and ability to share the fear as much as I can.

The Crook family from Colorado (picture provided)

Thank you Sarah for being with us today. Opening your heart, home, and family up to us, I know will provide such a road of peace and hope for other who have been touched by any type of cancer, mostly liver cancer. Again, thank you and many blessings to you and your family. Give Jamie a big hug from me, her liver cancer survivor sister. #gogreen