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 

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

Thursday Turtles

This my friends here above is a clean turtle aquarium. Below is the unclean turtle aquarium, where we actually start todays journey, cleaning the turtles aquarium. Yuck, nasty, I know! (Be sure and see at the end of this post for a look back on Thursday Turtles-click on each one to look back)

Let the process begin, I start here with a net to fish out each turtle one by one. 

I place each one in a small clear plastic container. They climb over each other repeatedly to a settling stance waiting to see what's next. 

Using an old toothbrush, I lightly scrub their back to remove what amount of yuck I can. 

While they continue sitting in the container, I begin the process of dumping the water and washing the aquarium out. If you notice there are two rocks laying next to the aquarium. One is a floating rock, it's the big one, and the small one is a regular heavy rock. Both are removed and scrubbed down. 

I love to wipe the glass with a paper towel removing the water spots. 

Crystal clear, I start the process of putting water back into the aquarium. The aquarium is set back on the table on top of a black towel. I place the water hose into the aquarium slightly turning the water on. This process of putting water back into the aquarium doesn't take long at all. Usually I only fill it up half way. What does take a long time is the entire process start to finish and taking pictures of each step take even longer. 

Get me out of here!

Almost full!

Full!

They love when their water is clean. They swim for hours once they adjust to being back into the water. I did a video one day of them swimming around in clean water to my grandfather. He loved it!

A look back:

Meet the Turtles

Fred

Pedal

Sammy

Engine

Who's Bigger