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Nikki's Story
Submitted by Sandy <HawthornSlh@aol.com> on 17/Jul/2008
205.131.188.5
Message:
My 22 year old daughter Nikki was diagnosed with FHC on June 5, 2008. She had been having some pain for a minimum of 6 months and had lost approximately 30 lbs which put her at about 125lbs. Nikki didn't have insurance so was putting off going to the doctors. Finally on May 23, 2008 she went to the emergency room where they said she had pneumonia and sent her home with antibiotic. The following week, May 30, 2008, Nikki returned to the emergency room in much more pain so they did a CT Scan. The scan showed what they thought was two masses on her liver. Nikki was admitted to the hospital, which is in a very small rural town and a country hospital. On June 2, 2008, she was transferred to the University of Maryland Medical Center, Baltimore, Maryland, US. The testing began and the MRI showed a tumour that was 14 x 10 x 8 cm on her liver. Additionally, the lymph nodes surrounding her liver were enlarged. On June 5, 2008, it was confirmed that Nikki had FHC in the liver tumour and they would be doing an additional biopsy on the lymph nodes to confirm that the cancer was the same. This was confirmed on June 9, 2008, the same day she was released from the hospital. While in the hospital, Nikki was very nauseated and was unable to keep much food down and continued to lose weight. By the time she was released, I believe she weighed 112lbs.
Nikki was home for one week and she gradually got worse, she was very nauseous and unable to keep much, if any, food down. The Liver Surgeon contacted us on June 11, 2008 to say that he and the Oncologist were discussing how to best treat Nikki. They were considering using chemo first to shrink the size of the tumour in an attempt to make the surgery easier. I asked the surgeon if he really thought that Nikki could withstand chemo since she continued to be nauseated and can’t really keep much food down. He stated he didn’t realize that was the case and he said he would further discuss with the Oncologist and get back to us on Friday, June 13, 2008. The surgeon called on Friday and stated that he would be performing the surgery to remove the liver mass and some of the lymph nodes early the next week. He would call on Monday to let Nikki know when to report to the hospital.
Meanwhile, Nikki and I are doing wedding planning as she is getting married on August 16, 2008. Additionally, Nikki’s only sibling is in the military and currently serving in Iraq. So I have to contact the military through the Red Cross to get her brother home for the surgery because we are told that the prognosis is poor.
Monday, June 16, 2008, the surgical team contacted Nikki to tell her to come and be admitted to the hospital and the surgery would be performed the next day, June 17, 2008. Nikki’s brother makes it home the morning of June 16, 2008 and they have portraits taken of them together with Nikki in her wedding gown because Cody will not be able to make it back to the US for the wedding. Nikki has a very large family and the morning of June 17, 2008 arrives and she is prepared for surgery with more than 15 people there to support her, Mom, Dad, Step-dad, grandparents, aunts, uncles, brother and very close friends. Some of these family members had to travel more thank 700 miles to get to Maryland, but they did, just to support Nikki and I. Nikki’s surgery lasted for 7 hours. They successfully removed the tumour and 30% of her liver. They removed some of the lymph nodes but were unable to remove them all because there were some that were matted to the blood vessel that go directly to the aorta and it was to risky. So……the outcome, Nikki still has FHC and additionally, the lymph nodes in her chest appear to be enlarged. Nikki was released from the hospital on June 30, 2008 but has returned on two additional occasions and is currently (July 17th) in the hospital. They are inserting a feeding tube because she is unable to eat much and when she is nauseated, she doesn’t drink much either. She is currently at 104 lbs and hasn’t even begun any of the chemo yet.
So this is Nikki’s story. I am frustrated because we have no prognosis and it is hard to plan and move forward without that. From the things I have read, I feel like Nikki will have a recurrence with the liver if she survives long enough. Has anyone else had the issue of being unable to remove lymph nodes because they were matted to blood vessels? Ever heard of the pancreas being involved? Has anyone else been diagnosed this year? In the US?
Would love to hear from some of you.
Sandy
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