What I heard from another mother

On Monday's here at Ashley's Art Closet, I usually post titles containing a "w" word… what, when and where. 

Example:

What I recently made

Where's your green

What Shampoo I use

Last Monday, I shared "what I heard from a mother" as a starting point sharing stories of other families touched by liver cancer for October Liver Cancer Awareness month.

This Monday, I am hearing from another mother:

"What I heard from another mother"

In this last week of October, I'd like us to finish out honoring a few more families touched by liver cancer. Knowing October is not just about a pink wash out, but a certain amount of green too. Emerald green marks liver cancer awareness. There is actually different types of liver cancer. The stories I am honoring are all families of those touched by a certain type, FHC, Fibrolemellar Hepatcellular Carcinoma, a rare form of liver cancer found in teens and young adults. This is the same type of cancer I battled almost 15 years ago. 

Today, Rachel Moore from Arkansas is with us. Her daughter Moriah was diagnosed with liver cancer October of 2011. I welcome you Mrs. Moore to carry us on this journey you and your family have been on the pass few years. 

Mrs. Moore let's start with how you found out Moriah had liver cancer. How was she treated?

Moriah attended a Back to School function at a church youth group. She was feeding her sister ice cream by hand as she participated in a race. She came home with frost bite on her hand. I took her to the doctor. Which gave her a full exam because I gave the symptoms of her abdominal pain attacks she had already been having. When the exam on her abdomen was done the doctor felt what was thought to be blockage. I know it was the Lord that led her to send Moriah for CT scan instead of just prescribing laxatives. That is when they found the tumor. In the meantime, we went to Arkansas Children's Hospital burn center for the frost bite in August for treatment. The results of the scan was a mass on Moriah's liver. We went back to Children's Hospital again for a biopsy with video assisted MRI footage which showed a 7cm mass in her liver and gall bladder. The radiologist actually came to the room just to look at her. I will never forget Moriah was asleep in the bed. He asked if he could look at her. I will never forget the look on his face. He said nothing because the emotion of his facial expression said it all. The Surgeon called me the following Monday and told me that she had Fibrolamellar Hepatocellular Carcinoma. 

The wind was knocked out of me and just as quickly the Lord whispered to me "My name is greater than the name of that cancer". 

We were sent back to Children's Hospital for an MRA and more ct scans, blood work, and MRIS of all kinds. Surgery was scheduled for the gall bladder removal and a liver resection. (View further down to read how the day of surgery went. It's located in the section of Moriah's one year post surgery story)

Recovery was 9 days in hospital due to allergic reactions to pain meds. We found out that the epidural that was giving her meds right after surgery was only working half of her body. We didn't find this out until the next day. Then she had a reaction to HydroMorphine. I have never seen such courage in anyone other than my daughter. Three months after her surgery she got really sick and actually missed more school from having strep, mono, and pnuemonia all at the same time than she did with her liver surgery. She was hospitalized for 9 days and had to be schooled at home after that for 2 weeks. Doctors believe her immune system was just trashed after her liver surgery. So when she went back to school she caught all those winter bugs going round. Her system couldn't fight it. She is now 3 years cancer free and back to her old silly dancing self. 

Before the cancer she was in cheer in the middle school and waiting to be able to try out for the school squad which she was not able to do since she was in the hospital with strep etc when tryouts were given. Her stomach muscles needed two years of stretching and core building before trying our for the school dance team and making it. One more thing I remember, I believe is most relevantly amazing is when her father and I shared her scans revealed she had cancer she said, "No, I don't have cancer my liver does." From that moment on that became our Motto. On the day she had her surgery the first thing I said to her in recovery is, "your liver doesn't have cancer anymore".

This is a note Mrs. Moore wrote summing up her reaction to hearing FHC, Fibrolemellar Hepatcellular Carcinoma. As well, how she is managing now.

Today while sitting in church listening to my Pastor talk about who our Source is, BTW His name is (JESUS), I believe the Lord revealed something to me that might benefit you too.

Two years ago when we were given Moriah's diagnosis and the Dr. said, "Fibrolemellar Hepatcellular Carcinoma" the wind was knocked out of me on the other side of the phone line. For a brief minute I really thought I might vomit. Then the Holy Spirit whispered these words to me, "My name is greater than the name of that cancer". And immediately the strength came back to my heart and lungs and stomach. During the weeks that followed that phone call I remember searching every inch of the internet and its information on this unknown disease. Vary rare is not an over statement. At the time, research had just begun on this horrible disease, however it was not published. The only info was on doctors journal websites or over seas research groups. What I did find while trying to fill my brain with the knowledge of what this illness was and what it was going to put my daughter through, was that it did not bring me any comfort, only fear!!! It is hard to stand in Faith against something when FEAR is rattling your sure foundation. I told Earl, my husband, one night after hours of research that I just couldn't do it anymore that all this knowing was crippling me. 

And the Lord reminded me that He is as close as His name, and that He inhabits the praises of His people. So from that moment on I only used my computer to worship or listen to worship songs or to download worship songs and when I did that the atmosphere of my mind and heart was transformed from fear to FAITH! 

Was I still scared? 

Yes. 

But, you can be scared and not afraid. You can be concerned but not worry. Just like you can be angry and not sin.

Just as Pastor Carl said today, you need to be tapped into the right source or the wrong fruit is what you will bear.

I remember standing in front of the church the day they prayed over Moriah before her surgery and telling everyone that there may come a day that I would cry about this cancer , but it would not be today. I remember saying there will be other battles that will shake my foundation, other days of stress and other trails of life. But that this trial was going to be a memorial moment in our lives that the Lord was going to show us How strong He is and He would receive the glory from it. 

Let me tell you, as hard as this cancer journey has been there have been days since that have seemed harder in my family life to deal with than the cancer. 

I believe it is because of desperation I was totally tapped into my Source of Strength, My Source of Hope, My Source of Peace and many times since, I haven't been totally tapped into that Source.

I said all this today to say every day is a day to take a drink of water from the fountain of life, and everyday is a day to put your Faith and Trust in Him who is able to do the impossible. 

Everyday, every moment is the time to be connected to that source so that when the storms of life blow, you will be scared and not afraid, angry and not sin , and concerned but not worried. 

You will be living an Abundant Life. 

This wednesday we go to have Moriah's 2 year check up. Am I concerned, yes! Am I scared, yes. Is my Faith shaken, NO. 

My anchor holds within the veil. 

Christ Alone my Cornerstone.

Moriah's grandmother's reaction to hearing Moriah had cancer.

Every Sunday after church, there is always that little excitement that touches my soul and reminds me that God is who He says He is. I have heard from the preacher and praise reports from others in the crowd about the many promises the Lord has granted. It is easy to believe the words of God when the request has been granted..a job found, a financial windfall or  a healing  that has been long awaited. What is hard is when I am on the waiting end of the promise to be fulfilled.

When I am awaiting the tests and a bad report comes, am I still excited? It is during this time.. that space where my knees are quacking and I am struggling to believe those same promises..  that my armor starts to rattle. Just such an instance is occurring now. My 12 year old granddaughter, Moriah, has just been found to have a tumor on her liver. That is not supposed to happen to anyone in my life. Not anyone close to me. It only happens to those other people around me..right? It is supposed to happen to others that I pray for... Those to whom I can give a good word. Not someone near and dear to me. Yet it has.

This morning, I found myself crying out to God for His promises to come true in this situation. I asked that in addition to His promises for healing, that His promises for strength be added to Moriah's parents,  Rachel and Earl, as they have been forced to lay their daughter on the alter of faith. Knowing them, they would much rather have been laying there themselves. But that is not their part of the journey. Like Abraham was asked to trust in his God and lay down his son Issac, they have to stand on the promises of their God for their child. While Abraham and his son were fighting the fight of faith on the mountain, his friends were waiting down below for their return.

Everyone must walk their own journey...but no one walks it alone. Each of us has a part to play. Perhaps we are the one who encourages the parents to take another step or reminds them that they are not alone. Some maybe anointed to bring a casserole to those left at the house. Another may have the financial means to help with the extra expenses required during hospital visits and lost days of work.

Standing on the promises is an opportunity for the whole of Gods church to come together and support each other.  Each of us will have our turn fighting the fight of faith in the midst of the battle...no one escapes this forever. But it is my prayer, that each part of the body of Christ,  will search their heart and stand collectively on the promises of God to sustain each other.

Be blessed today and remember..He is the same yesterday, today and forever..

Mrs. Moore's story she wrote on the one year anniversary of Moriah's surgery.

So many of you know that Moriah had surgery to remove a cancer mass that was in her gall bladder and liver last Oct. 19th. What you may not know is that a miracle happened that day and it was because the faith of those here in the states was mixed with the faith of a tiny tribe of Massi in Uganda as well as the Faith of a little child named Moriah. 

When the surgeon called us to say that the tumor in Moriah's body was cancer and its name was Fibrolemellar Heptacellular Carcinoma, a chemo resistant cancer that is very rare and very deadly. The wind was almost knocked out of me for about a sec. So sweetly the Lord spoke into my ear and said, "My Name is Greater than the Name of this cancer." Life was breathed back into my lungs at that very moment. 

When Earl and I shared this news with Moriah her first response was, "I don't have cancer my liver does." I believe at that moment the tumor in her body began to decrease. Her faith, the faith of a child, was working in her to heal her.

The surgeon also said that day that her tumor was in a very bad location and wrapped around her vena cava and portal veins as well as many other veins and arteries in her liver and in her gall bladder. Removing the gall bladder is no problem he said. However, removing the tumor from her liver was going to be a different story. 

We began as a family to pray immediately and passed the word to our family, and church family, and this community as well as communities all across the nation literally. Our friends and family passed it on to their churches and friends. 

Our church had a mission trip leaving for Uganda the week of Moriah's surgery. They were going to visit our newly opened orphanage in Uganda and would be visiting other neighboring tribes and places in the area. I asked the leader of our group to carry a picture of Moriah with them and to have the children at the orphanage to pray for her. 

This next part of the story gives me chills every time I think about it. 

The night before the surgery I could not sleep. I stayed up throughout the night worshipping the Lord and Praising Him for the healing I believed He would do for my daughter through this surgery. One of the songs was You are my Hallelujah by Rita Springer. I couldn't stop praising. 

Moriah woke up two times between 1 and 3 to vomit profusely.  

We had to be at the Hospital at 5am. 

She vomited all the way to Children's. 

Earl and I both believed that she was being healed. 

Earl even mentioned I really think the Lord is shrinking that tumor. 

When we got to the Hospital we were greeted by the surgical staff who would be operating and by the anesthesiologist  who would be giving her the pain meds and putting her under for the surgery. This team shared with us minutes before they take our daughter back to the OR that they had been looking at her films all weekend and believed that the tumor was worse than originally thought. 

Moriah would be coming out of the surgery with a port for them to do chemo because they did not believe they would be able to remove it all. They also said she would loose at least two lobes of her liver and all her gall bladder and that their was 4 pints of blood waiting in the OR for the transfusions they would need to do. They also said that the 4 hour procedure may take as long as 6/7 due to the veins and arteries it was wrapped around.

You can imagine how this news hit us not to mention our 12 year old that lay on the bed beside us. 

We just looked at them and said The Great Physician will be in there with you to her and to the staff.

Then they wheeled her away.

I can't describe the peace that I had during the 3 1/2 hours it took. The anesthesiologist herself came out at the 2 1/2 hour mark to tell us the surgery was going WAY better than the films showed and that they had not had to give her one single drop of blood. 

When they buzzed us at 3 1/2 hours to tell us the surgery was over we were amazed.

When the surgeon came to meet with us to tell us that everything had went sooooooo well and that none of the veins or arteries were involved like they thought. She only had a small pizza size wedge of her liver removed because when they saw the tumor it wasn't in the place it was shown to be on the films. It was right on top of her liver and not as big as originally thought to be. 

We Praised the Lord and knew what we had prayed for had taken place. 

What you may not understand is just how many films they had to look at. They had Ultrasound, Ct scans with and without contrast, a total of 4 hours of video assisted MRI's and an MRA. Believe me when I say before the surgery the Doctors knew what they thought they were going to find. The hospital surgeon had even requested a special surgeon from UAMS who was a liver surgeon only who had been doing this for 40 years. 

When we asked the drs a few days later why they thought the tumor was not as originally suspected and the attending surgeon said well you know those films are just shadows and you really don't know what you are going to find until you get inside. We said well we believe the Lord took care of where it was located and made your job easier. 

Here is the amazing part!

Remember the tribe of Massi well unbeknownced to us they had been praying with me in the middle of the night before the surgery. As a matter of fact the next day the Tribe leader woke up our mission leader at 3am and said, "How is sister Moriah, Have you had any news? We have been fasting and praying all night and all day for her healing!!!" WOW  Remember I said that I was unable to sleep for doing nothing but praying and praising well across the other side of the world so were people/ children even that didn't even know her. Just had her picture at the very moments she is vomiting and the Lord I believe was at work in her to move and shrink that tumor.

We have told Moriah that her scar from the surgery is not a scar but Yahweh's tattoo reminding her that it was He who healed her because of her faith. The tattoo is in the shape of a Y.

I give GOD all the Glory and Praise Him that Moriah's liver has been free from cancer for 1 year this Oct 19th.

 Moriah's Picture that went to Uganda.

Yahweh's tattoo.

Moriah has a twin? 

Her and her sister Ashlee were born on 6-2-99 Moriah was the oldest born first weighing 6 lbs 8 oz. Ashlee was born 26 minutes later weighing only 5 lbs 13 oz. 6 days later Ashlee was in the hospital, the same hospital Moriah had her surgery in, she contracted a virus in the womb causing viral meningitis. Ashlee also contracted tularemia a very rare tick born illness which caused her to be hospitalized for 9 days. She went home on IV antibiotics for 1 month giving to her 3 times a day. She then contracted another tick disease Lyme when she was 3 years old being hospitalized again. During all this time Moriah was only sick due to ear infections. Once she got her tonsils removed when she was 3 years old. She was never sick with even a cold until she was diagnosed with Fibrolamellar Hepatocellular Carcinoma. Rare things have happened and tried to attack my children but nothing prepares you for your 12 year old being diagnosed with cancer. Nothing. However God has been so good and so faithful through it all. 

(Moriah and her twin sister)

(The Moore family Celebrating Moriah's 2nd year cancer free at their first coffee social. They are actually having their second coffee social today 5:00-7:00 at Arrow's Cafe & BBQ)

This year before school started Moriah cut her hair donating it to Locks of Love in honor of her 3rd year cancer free. (see pictures below)

The Moore Family: Earl, Moriah's dad, Nancianne oldest sister with her first child, Olive (first grandchild of the family), Rachel, Moriah's mom,  sister's Natalie 18, Madelynn 16, and Moriah with the hat on 15, and her twin Ashlee 15. Photographed at their family Restaurant in Heber Springs, Arkansas, Arrow's Cafe & BBQ. 

Wow! Amen….

I say Amen to it all, what a marvelous story of His healing. Thank you Mrs. Moore for opening your heart and home to share Moriah's story. She is a true miracle. I can't wait to see how God uses her for the rest of her life. She has already touched countless others lives. Hearing her story has been so encouraging. It reminds me a lot of mine and makes me have that punching power in my heart and soul of reassurance knowing He is mighty! I thank Him for His perfect timing putting your family in my path. Hugs to all of you!

May others be aware, find hope and courage from hearing Moriah's story. 

If you missed last weeks interviews: 
What I heard from a mother
DIY Tuesday Interview
Wednesday Words
Tracy's Thursday

Thank you for joining us all this far making awareness of liver cancer this October!

Please if you'd like to make a donation to the Fibro Foundation do so by clicking. Look for the blue donate now button in the upper right hand count. Any amount is great, I promise! 

DIY Tuesday Interview

Jennifer Zander-Currently fighting-picture provided

Today I have another interview to share with you as a part of October Liver Cancer Awareness month. Since Tuesday usually is my DIY day we are going with DIY Tuesday Interview.

What you will need:

a willing person who is currently battling cancer   
a picture of them personally
a picture of their family
pen & paper
a list of in-depth questions
honor
courage
strength 
a computer
a blog
a praying heart
a listening ear

Please help me start with welcoming Jennifer Zander!

Jennifer currently lives in Indiana. She was diagnosed with Fibrolamellar Hepatocellular Carcinoma on Thanksgiving Day in 2003 at the age of 28. Jennifer and I recently met in a cancer group, Fibrolamellars of the World Unite. It is my honor to have you and share your story as a means of giving back to others who have been faced with this nasty disease. 

Let the interviewing process begin…

Jennifer let's start with what life was like before your cancer diagnosis?

My life before cancer was actually kind of boring.  I was in perfect health, not much of a partier, more of a homebody.  I moved out of my parents’ house when I was 22 and moved in with my best friend.  I met my husband about 2 months later.  We started dating on and off for the next 3 years.  He was a partier and I didn’t know if that’s what I wanted in a husband.  Once I decided to move on for good is when he changed.  We got engaged the summer of 2002. Everything was perfect!  Wedding planning was going great, the countdown was dwindling and the day was fast approaching.  The day was January 31, 2004.  My last dress fitting was at the end of October.  I couldn’t believe in 3 months I would be married! 

Jennifer please share with us how you found out you had cancer.

On November 12^th I was at work sitting at my desk and clumsy me dropped my pen on the floor.  I bent over to the right to pick it up and I had a pain that felt like someone stabbed me with a knife.  It was so intense I fell out of my chair onto the floor.  My co-worker sitting behind me seen me fall and rushed over to help me, but the pain was so bad I told her not to touch me.  I sat for a few minutes as the pain started to lighten, then she helped me up to my seat.   I noticed my vision was blurry and I saw white stars.  I sat for a while drank some water and after some time started to feel normal again.  My co-workers urged me to go home.  So I went.  That evening I was making Lasagna, as I was pulling it out of the oven I felt that sharp pain again.  I dropped the pan, which fell onto the oven door and my hands touched the oven door, burning them.  My fiancé ran into the kitchen to see what happened and if I was ok.  He told me I better go to the doctor the following day to see what was wrong.  I woke up the next morning and informed work I was going to swing by the doctors on my way in to work.  Once I was in the exam room the doctor had me lay down and pushed on my right side and I instantly screamed.  He said he felt something large and he ordered a CT.  I went to the Hospital and had a CT done, as I was changing to leave a nurse came up to me and told me once I was dressed to wait in the waiting room for the doctor.  I was confused because the doctor told me at his office he would call me with the results.  So I waited, and waited, and waited… finally I said I’m leaving, when the doctor arrives call me and I’ll talk to him on the phone.  They told me no you cannot leave.  You have a mass on your liver.  I said, what is a mass?  Then they said a tumor, what is a tumor?  They explained to me what both were and that I needed to stay.  I immediately called my fiancé and told him to get here now.  The doctor finally arrived and had me due testing and the testing showed my blood level was half what it should be.  They admitted me and started giving me blood.  I received 2 units that evening.  In the morning, the doctor came in and told me I need to go to a hospital in Chicago because he had never seen a tumor that large in the liver during his 23 years as an MD.  That scared the s#%@ out of me!  I was released that next day because it was my bridal shower and I wasn’t missing it.  The following Monday I made an appointment at Northwestern in Chicago.  Northwestern did a lot of testing on me and told me I would have the results within a week.  We went to my families for Thanksgiving had a great dinner and some awesome family time.  On our way home my phone rang with a Chicago number.  I looked at my fiancé and said “You’ve got to be kidding me, on Thanksgiving.  This is serious”.  I answered and they asked if I was ok getting my results over the phone.  I said yes, because I knew Dan was with me.  They told me I had cancer.  

What type of initial treatment did you receive?

My doctor appointment at Northwestern was pretty much a blur.  There was so much said that I didn’t understand.  The main thing I understood was they wanted to do surgery within 2 weeks.  I said, oh no that’s not possible.  I’m getting married in 8 weeks.  Can we do the surgery after the wedding?  Politely the doctors said “No”.  We have to do it now, or you won’t be here in 3 weeks.  What??? My tumor was so large 11cmx14cm encompassing the right lobe of my liver and weighing 9.5lbs, that the tumor was cutting off my blood supply to my heart.  My right hepatic vein was dead and my left hepatic vein was only working approx. 30%.  My liver resection surgery was scheduled for Dec 12, 2003.  82% of my liver was resected, seven of your nine liver sections were removed.  I recovered well.  Dan and I got married on January 31, 2004!

You mentioned to me additional surgeries, tell us a little about that.

I was in the OR again in March 2004 for a right diaphragmatic hernia caused by the tumor.  Three weeks later in April 2004 I experienced a small bowel obstruction from the hernia and had 6” of small intestines removed.  Recovery was rough.

What did your doctors think about you having children?

We received the BEST news of our lives on December 8, 2004.  I was pregnant!! I was scared, shocked, and completely overwhelmed.  As you can tell it was not planned.  My surgeon told me not to get pregnant until at least I’m completely recovered and one year of clear MRI scans.  I was super scared to tell the doctor.  It all worked out well.  I gave birth naturally to a baby boy named Lane on August 15, 2005.

Was there ever a point you had clean scans?

My clear scans were short lived.  In June of 2006, I was told my cancer had returned.  I had a 3cm tumor attached to my right diaphragm. I was devastated to say the least.  I felt hopeless, scared for my husband and my 10 month son. I instantly started to think of his life without me.  It was horrible.  I fell into a depression.  I would lay on the couch and cry for hours.  I really thought my cancer was gone.  I was so blinded by this disease.  I thought it’s gone and out of my body.  Yah!  Umm...Not so much.  My family and friends helped me through the surgery.  Little did we all know I would need seven more surgeries in the next 10 years? Three months after this surgery my MRI scans showed another small tumor near my right diaphragm.  Back to the OR I went in October 2006.

More kids?

For the next 2 ½ years I was tumor FREE!!  My husband and I decided Lane needed a sibling.  I received the “OK” from the doctor and BAM I was pregnant the next month!  I was walking on clouds.  I gave birth naturally to our second son named Luke on June 27, 2008.  Two boys, I was in love.

I sense your heart growing stronger through this journey. Tell me more?

Dan and I decided we wanted to buy property to live in the country so the boys would have the outdoors to do anything they wanted.  We bought 13 acres, picked out our house, and planned on breaking ground in May 2009.  The brakes were put on, again.  I had a chest tumor show up on my scans. Off to the OR I went.  I had surgery in April 2009.  We decided that we weren’t letting this cancer disrupt our dreams.  We broke ground on our dream house May 15, 2009!  I believe this is when I changed my outlook on my disease.  I realized there was nothing I could do to stop the cancer from forming.  There was no cure.  My husband and I made a pack that I would live my life as normal as I could and be as happy as I could for my boys.  If/when a tumor decides to pop up again I’ll fight it with everything I have, recover and move on.  I will NOT let it control my life.  I wanted my boys to grow up knowing their Mom fought with dignity, strength, hope, faith and grace against her cancer!

A second child, a new home in progress, spirits where high at this point where were you at on treatment?

The doctors decided to have me do radiation in my chest to help prevent any tumors near my mediastinal. It was a tough spot to get to multiple times.  It was behind my heart in front of my esophagus. I did radiation for 6 weeks every day.  The only real side effect I had was fatigue.  Not sure if it was from the radiation or the traveling to the hospital every day.

You moved in your new home and then what?

We moved into our new house in Jan 2011.  I thought I was in a dream.  I never thought I would be here to see my forever home.  As we got settled in my next scans were approaching and I felt uneasy and scared.  I told myself things are going good.  I hope I’m not kicked in the gut again.  Well, I was.  There was a very small lymphoid node behind my liver that was showing up.  The doctor suggested to get it out.  Off to the OR I went in April 2011. My recovery went well.  I went on for the next year not knowing that the doctors were watching a spot in my liver, but weren’t for sure if it was cancer. It wasn’t growing hardly at all.  To date I’ve never had the cancer return to my liver.  It has mainly stayed near my right diaphragm and chest area.  The doctors decided not to wait until this spot grew they wanted it gone.  I had a procedure called Chemoembolization.  Chemoembolization is when they go through your groin up through your portal vein into your liver and inject chemo beads directly into the tumor.  Within 3 weeks the spot was black.  It was never biopsied, so we really don’t know if it was ever cancer.  I did have a complication with the procedure though.  An abscess formed in my liver.  It was large.  They inserted a drain tube into my side directly into my liver.  For the next 4 months it drained.  My doctor then noticed my liver wasn’t functioning like it should be.  I was informed I would need a transplant.  

Explain to us a little about after you were told you needed a liver transplant.

For the next 3 months I would go in every 2 weeks for a tube check to make sure the abscess was not filling up and my liver secretions were draining out through the tube.  In the meantime, I was going through 4 weeks of grueling tests and procedures for the transplant.  Once all the pre testing was done I was told I would know within the next couple of months if I was approved for the transplant.  On Feb 22, 2013 I went for my normal tube check appointment.  My doctor came into the room (which was odd he usually was behind the glass) with another doctor.  They came up to me and showed me the TV screen where you could see my liver.  Looked foreign to me...ha-ha.  They showed me that the abscess was gone!   My liver was functioning normal again, plus it healed itself!  WOW, my tube came out and I was bag free!  What a great surprise.  The doctors still suggested a transplant in case it was to happen again.  I could live with that!

Did you continued to work outside the home through all this?

On June 12, 2013 I received the call, I was officially on the liver transplant list.  I then decided to resign from my job where I worked for 20 years. Yes, 20 years! I started the day after I graduated from high school. I was ready to move on and needed some time to get my life on track and prepare for an upcoming transplant.

Another surgery? Off liver transplant list? What? 

The doctors had been watching a particular spot in the dome of my liver for about 2 years unannounced to me.  So when I had my scans in Oct 2013, they decided it needed to come out. Plus I had a small nodule on my right chest wall.  Due to the spot in my liver growing slowly and it was stable they choose to remove the chest wall nodule first.  That surgery was in Jan 2014.  Once the pathology came back and it was confirmed cancer I was taken off the transplant list.  In April 2014, they removed the tumor from the dome of my liver.  During the surgery, the surgeons realized that the tumor was not in my liver.  They actually could not find it in my abdomen.  I know, sounds weird, right?  After bringing in another surgeon to help look for it, they found it wedged between my heart and my left diaphragm.  Scary, right! Yes, I was worried and so were the doctors due to it being right against my heart sac.  Thankfully everything went well and I started my recovery.  This recovery was nothing like any of the others.  I was very sore and week.  It took me almost 4 months to start to feel like my old self.  I still as of today don’t feel 100%.  

Have you had any fundraiser along your journey?

Through the 11 + years of fighting my disease I’ve been approached by numerous people asking how they can help me.  Many people offered to put on a benefit, but at those times I wasn’t ready for that.  So after this last surgery I felt like I needed something.  After talking to my parents and my husband we decided a benefit was just the thing I needed at that time.  With mounting medical bills and traveling to New York MSKCC for treatment a benefit was organized for my family and me on June 28^th 2014.  It was great.  I had seen so many people I hadn’t seen in years.  It felt so good to catch up with all my family, friends and people I didn’t even know that came out to support me. I was so happy that day.

How is life currently, Jennifer?

My emotional and physical health has been dragging for the last 5-6 months.  I haven’t been myself and I want to change it.  With that being said, I’ve joined a new group at a place in our town called the Hope Center.  It is a great place.  It is a Christian based Cancer support group.  It has helped me open up about my feeling and taught me that people do care and want to listen and help me deal with my emotions.  They have a yoga/stretching class once a week that is free.  I’ve been going for about 2 months now and absolutely love it!  I even want to help volunteer.  Going to the Hope Center has made me happy and has also helped my boys learn how to cope with mommy’s cancer.  Since the boys are getting older now (9 & 6) they’re starting to ask some questions.  I’m glad I can answer them with confidence!

Jennifer wants us to know this is the short version of her forever fight! 

And that my friend is how you interview a currently battling cancer patient. 

(Jennifer and her family)

(Jennifer's current profile picture on Facebook)

Thanks for being with us today Jennifer! 

Jennifer, it's in my hope you gained some additional strength and courage from where you are on this journey by sharing your story with me personally first. Then allowing me to open the floor up for others to see. The releasing of it has to be refreshing, freeing. I know it will be such a light of truth for other to see. I pray for you specifically (may you be healed), your husband and your boys as well as your additional family members and friends. Thank you so much for opening your heart! You will forever hold a special place in my heart. Your family is adorable. #gogreen

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