Monday, October 20, 2014

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

1 comment :

  1. Very similar symptoms.
    Excellent story and very informative.

    ReplyDelete