Personal Stories: Still Lucky Parents
Published in the Hepatitis B Foundation newsletter B Informed (Winter 2004)
By Helen Wise
How could it possibly happen? Every precaution and care was taken. Matt, our only child with hepatitis B, had been monitored since he was two and a half months old. Three generations in our family had been tested and vaccinated for the virus. Then, suddenly and without warning, our middle son Andrew was diagnosed with hepatitis B related liver cancer. How? How? How?
We had felt so lucky. Matt, born in Korea, joined our family in 1984. Soon after he came home, he was diagnosed as a hepatitis B carrier. At that time hepatitis B was a fairly new phenomenon on the American pediatric scene and there were many unknowns. By the time Matt started school, we had found the Hepatitis B Foundation and the Liver Cancer Prevention Center at Fox Chase Cancer Center.where he was given a physical exam, and blood was drawn to monitor for liver involvement.
In 1985 our family grew again. Andrew, 7, and his sister Jenny, 6, arrived from Korea, and the same pediatrician tested for hepatitis B. We were happy to hear their tests were negative, and both Andrew and Jenny were vaccinated. We thought nothing more of it.
A son-in-law and two grandchildren joined our family and were all vaccinated. Matthew turned 20, still showing no hepatitis B side effects. All was well. We were so lucky.
Fall of 2002
Then on Sept. 2, 2002, Andrew, woke complaining of abdominal pain. By then I had six children and had been a mother for over 30 years. Stomachaches were routine. I suggested he get dressed and go to work; maybe he would feel better. But by the time breakfast was over, Andrew was in such pain that his sister took him to the emergency room and by the afternoon he was admitted to the hospital. I was stunned when two doctors came to tell us Andrew tested positive for hepatitis B.
A biopsy confirmed a diagnosis of stage IV hepatocellular carcinoma [liver cancer] metastasized to the lungs. An earlier diagnosis could have meant surgery or a transplant, but now chemotherapy was our only option, and even then it only shrank the tumor in a small percentage of patients. Our best chance was a clinical trial and a miracle.
Neither was to be. By the time Andrew qualified for a trial, his liver function was so low he was rejected. Andrew Lee Wise died at home on Dec. 11, 2002. He was only 24 years old.
But that is not the end of our story.
After Andrew's cancer diagnosis, I called our former pediatric group to see the results of all the original hepatitis B tests. Their office said the lab's records before 1992 were no longer available. One doctor gave me a handwritten copy of their file reports and said, "See! Their tests were negative. Matthew's was positive."
I read it for myself: "Hep B Surface Antibody Negative." Just surface antibody negative means nothing! It is the combination of results from the surface antibody, core antibody, and surface antigen tests that determines a person's hepatitis B status. I felt and still feel like screaming. How could a leading pediatric group in a university town get it right in 1984 and so wrong in 1985 and 2002?
One Year Later
Our family has been devastated by Andrew's death. We are weary and wary, and painfully aware his life could have been prolonged, and might have been saved had his pediatricians recognized he was a hepatitis B carrier. The lessons we learned were painful and need to be passed on, but the experience is rare.
What advice do we have? Older adoptees and their families should re-test for the virus. Be sure you see and understand the tests and results [and ask for copies]. Vaccinate the entire family. Stay informed about the latest research on hepatitis B. And enjoy life.
When our youngest daughter Mary was in high school, our youth minister asked, "What was the best gift you ever got?" Mary replied, "Andrew, Jenny and Matthew." We are still very lucky parents.
Excerpted with permission from "One Family's Story: Coping
with Hepatitis B" by Helen Wise in
Hi Families Magazine (Jan/Feb 2004), published by Holt International Children's Service at www.holtintl.org.
Editor's Note: The Hepatitis B Foundation thanks the Wise family for graciously sharing their story so that other families can learn from their personal tragedy: it is important that adoptive parents are absolutely certain of their child's hepatitis B status. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. For further assistance, please feel free to email the Hepatitis B Foundation at email@example.com or call 215-489-4900.
A Profile in Courage: Andrew Lee Wise
Lee, Seung-hoon was born March 4, 1978 in Seoul, Korea. Andrew, as he is now known, and his sister Jenny joined the Wise family in Princeton, N.J., in December 1985. These excerpts from his journals, conversations, and e-mails chronicle his struggle with the news in late 2002 that he had liver cancer. Andrew Lee Wise died Dec. 11, 2002, at the age of 24.
Sept. 22, 2002-I wanted to send this letter, personally, to let each and every one of you know [my] biopsy confirmed liver cancer. If you are bewildered, shocked, upset, concerned, scared, anything at all, let me assure you that I am too. However, I have come to realize that this is just a battle and a battle that I can win and will win with God, my family and my friends.
Oct. 6-I have good news: I was accepted to the Cancer Institute
of New Jersey (RWJUH) for treatment
Oct. 25-I went into RWJUH October 7, two days earlier than expected
[for] chemoembolization of the
right lobe of my liver. I was pretty drugged up and cannot remember anything. Once I got home.extreme amount of pain.really tough.a high temperature.
Nov. 14-I hope that everyone is able to enjoy the few beautiful
autumn days that have come around
recently. However, a bit of bad news-the three spots originally seen in the scans on my lungs-they have grown since the first treatment.
Nov. 2-This treatment [chemoembolization of the left liver lobe] was a bit rougher and there were a few more complications but I am "done" (supposedly) until after Thanksgiving. I am quite concerned about what the next treatment will be. I have been told not to think about these things and focus on the here and now, but it is really hard to do. My typical day has two lows: the morning, when I first wake up and my body feels as if it has been through a thorough beating. and the evening, when everything is quiet and dark, and I am left to my wandering thoughts and self-pity. But, once I am up and have eaten my breakfast and taken my 9 or 10 pills, I begin to be progressively better as the day goes on. I am quite excited for Thanksgiving with my family. It will be the first time [most] of my siblings will have seen me post-treatment. I am a bit shocking to look at now.
Nov. 23-I need to have hope, keep faith and believe God is with
me always. I need . let myself be flooded by the enormous embrace
of love from all those around me, and even around the country.
Nov. 26 (first day of Hospice)-Living each day to its fullest potential, that is the goal. Sleeping, eating, exercising and engaging in merry fellowship is how I'll do this. I can do this with the will of God.
Thanksgiving 2002-Last Sunday morning, I was taken up to RWJUH after waking with pains in my liver. The doctor informed my parents and me the tumors in my liver and lungs were growing. This was obviously a shock to us but what was revealed next was heart-shattering. I was given an expected time frame of six months to live.I believe in miracles and continue to have faith. I will not let six months be the definitive! I pray that each of you will continue to be positive and to live life to its fullest.
Dec. 9-Dearest Friends and Family, as the Holiday season starts to take off, my health has turned somewhat sour. My nurse comes over more often, and eating, talking, listening, reading and writing are far more taxing than I ever imagined. I will try and remain as strong as I can for this holiday season as it signifies so much more to me this season than ever before.Thank you all for your love and support.I love you all so much! God bless you all!
Dec. 10 (Christmas list)-I want something very sentimental, such as a necklace with "mother" in English on one side and "mother" in Korean on the other, just to let [Mom] know she has and always will be my one and only mother.
Dec. 10-Death is not an evil at all, just a different blessing
that requires a more positive frame of mind
and good reminiscence..
Excerpted with permission from "Through Death to Life" by John Aeby in Hi Families Magazine (May/June 2003), published by Holt International Children's Service at www.holtintl.org.
Editor's Note: The Hepatitis B Foundation sincerely extends its sympathies and gratitude to Helen Wise and her family for sharing Andrew's story with us. The loss of such a beautiful, articulate, and generous young man is heartbreaking for all who knew him.