Dear Amanda,

Please read my post titled Fibromellar Hepatocellular Carcinoma.  My daughter was diagnosed with this rare form of Liver Cancer on 12/24/07.  This type of cancer is rare, but particularly rare in children, and this form of cancer is associated with people who have Cirrrhosis of the liver.  Fortunately, the best treatment of this type of cancer is removal of the tumor, and we went for her follow visit 1/16/08, and they completely removed the tumor and her CT can showed no other tumors.  They are considering her cured of the cancer and will she  have CT scans every three months for the next two years  and be closely monitored by her Pediatric Oncologist.  No future promises that other tumors won't develop but we were grateful for good news of the day. My daughter was diagnosed with Moyamoya 12/24/05, and suffered a major stroke a week later, she had  her surgeries in the early part of 2006.  Her doctors researched but were unable to substantiate any connection to the  Moyamoya and her present condition.  I would be very interested in what Dr. Scott has to say about his issue, and would be willing to share information about her condition with him. My daughter also has Livedo Reticularis and I am also wondering if there is any connection to this condition.   I will pray for your little guy and your family.  Please keep me posted.

Hi Amanda,

My daughter is being treated at Penn State Milton Hershey Children's Hospital in Hershey, PA.  What hospital is your son being treated at ? Maybe we could have their doctors get in contact with each other and compare notes. We signed a release so her tumor can be analyzed by other specialists. Fortunately, my daughter enjoyed thirteen years of perfect health and is doing very well. We are all confident that she is cancer free and will remain that way.  I couldn't imagine what it must feel like to have your baby go through so much, my heart breaks for you and your family.  God Bless, and please keep in contact.

What a small world!  We are from the Lehigh Valley area, but I am originally from Nesquehoning.  Was Hershey stumped by the Moyamoya or the Cirrhosis?  In both cases Hershey was totally on top of their game, and set in motion an action plan.  Please be aware that my daughter had the blood tests done and her AFP levels were not elevated, but the CT scan and MRI both showed the tumor was there, which is why she will continue the routine CT scans. I am going to try and access Tyler's website, but I am not the most technically inclined person. Hopefully, we can get in contact and talk. God Bless!