Maybe I should’ve provided a little information about the disease before I provided information about the cure…

Hepatoblastoma is a rare form of childhood liver cancer that affects about 1 out of 1,000,000 children.  Typically, it occurs before the age of 18 months, but almost exclusively before the 5th birthday.  It can be associated with other conditions, such as familial adenomatous polyposis (FAP) which runs in Crystal’s family.  Typically, the only symptom is a lump in the abdomen.  Other symptoms are weight loss, decreased appetite, back pain, jaundice, anemia, and vomiting.

Hepatoblastoma is often missed by parents and providers because of its rarity and lack of symptoms.  Diagnosis is made by biopsy, imaging, and other blood tests.  One of the bigger indicators is alpha-fetoprotein(AFP) in the blood.  AFP occurs normally in infants and decreases as we age.  Elevated levels of AFP tend to be good indicators that there is something going on.

Hepatoblastoma has four stages:

• Stage I – A tumor that is completely removable with surgery (liver resection).
• Stage II – A tumor that is mostly removed by resection.  The small amounts left over are treated by chemotherapy.
• Stage III – A tumor that is unable to be removed by resection.  Treatment consists of chemotherapy then resection of the remaining amount.  Chemotherapy is used again after resection to remove the remaining amounts.
• Stage IV – Cancer that has spread to other organs.  Hepatoblastoma typically spreads first to the lungs and then to the lymph nodes.

Treatment varies by stage, but chemotherapy is typically used for all stages.  Transplant is possible for the later stages and typically has a pretty good survival rate.  Survival rates for hepatoblastoma vary with stage.  Stages I and II have about a 90% 5 year cancer free rate.  Stage III is about 60%.  Stage IV is about 25%. (source: http://www.emedicine.com/ped/topic982.htm)

We are so very blessed for Noah’s cancer to be only a stage III.  As you can see, the survival rates go down quite a bit if the cancer spreads.  I thank God every day for this reassurance.

I want to thank everyone for their response to the Noah’s Song.  There has been overwhelming support for Noah.  That means so much.  We are very optimistic and with all of the prayer and intercession being made for Noah, I’m sure that we will come out on the other side of this by God’s grace.

Check the links page.  I should be updating that often.  If you would, please spread the word of this website.  While the primary purpose of this site is to keep everyone up to date on Noah’s progress, I would love this to touch someone or to help another family that may be facing this or a similar situation. 

God Bless,

Doug