My 13 year old son given only months to live with HCC

Am still reeling and have no idea why I am here in this forum...crying for all of you and your separate (yet together) miseries.                          

On Father's Day, 2008, my son, Quinton, was at Coney Island running around the park and swimming. Less than a month later he was meeting hospice volunteers. He is on Nexavar (Sorafenib)--palliative, not curative doctors assure me. He has bothersome (not debilitating) diarrhea several times each day and every two or three days he has horrible nausea, vomiting and "feeling like he has a virus." Those were also the symptoms that sent us to his doctor initially, so we can't blame them on the chemo. Our first visit to the family doc was met with, "It's probably just a super-bug. Come back if it doesn't resolve." Two weeks later we returned with a 6 pound weight loss. Blood tests and one week later we were at Children's Hospital in Cincinnati for 9 days.

 Doctors had tears in their eyes when they finally arrived at a diagnosis. They could not believe it was hepatocellular carcinoma; it is so very rare in a child. What an outrageously aggressive cancer this is. Quinton already had mets to the lungs/pancreas/pelvis. 3-6 months (9 mos. IF chemo helps). No reasons--no prior hepatitis--never sick in his life.

 I have gone from screaming "WHY?!?!" at God to thanking Him for every day--every second!!--that He allows me to have my son...my baby boy...my LIFE.

I don't have any questions at this juncture. I just felt a deep need to connect. I know you will be praying for us, as I will be praying for you.

I don't really ever respond to messages on this board, but your brought me to tears,,, I have  2 wonderful sons and to think something like this could happen to them just makes me cry,, I am very very sorry for what you are going through, and want you to know that i am thinking of you and your son,,,,,

k

I am sorry to hear yrou sad situation , I think we all on here feel so much for the others.

I lesson we had recently at church had this quote:

“We are limited in our visions. With our eyes we can see but a few miles. With our ears we can hear but a few years. We are encased, enclosed, as it were, in a room, but when our light goes out of this life, then we see beyond mortal limitations. …

“The walls go down, time ends and distance fades and vanishes as we go into eternity … and we immediately emerge into a great world in which there are no earthly limitations.”  

...please know that grief is the natural by-product of love. One cannot selflessly love another person and not grieve at his suffering or eventual death. The only way to avoid the grief would be to not experience the love; and it is love that gives life its richness and meaning. Hence, what a grieving parent can expect to receive from the Lord in response to earnest supplication may not necessarily be an elimination of grief so much as a sweet reassurance that, whatever his or her circumstances, one’s child is in the tender care of a loving Heavenly Father.

Sorry if this is way off base or too long.

 I do believe we will be with our children in the hearafter and still be families.I know words can not do much at this time. I do care.

I mean well. Prayers.

Barb R

I feel so so bad for you. Here I am crying for my 72 year old father, but my sorrow is nothing compared to yours. I have a son too and everytime I hold him, I think about you. Maybe there is some alternative medicine out there that can help.

bubul

I hurt for you losing your father. Mine is 74 and still wonderfully healthy; I am so grateful for that. I lost my mother to lung cancer in 2003, though, and to date it is the most devastated I have ever been. It is a lasting grief...I need her so right now. 

You will be in my prayers, My Mother had the same kind of Cancer she was told last year in May. she had  4 embolizations. and then started on Nexavar. Sadly her 2nd month on it she fell and broke her hip and never fully came out of  surgey and was in the ICU then passed away on Auf 4th. Just keep praying and enjoy every minute

Bev

My heart is broken for you.  I am a mom of a (almost)13 year old boy as well.  I pray that you and your son find comfort and joy and no worries every day that you have together , be it 1 or 100000000.

Have you researched any alternative treatments if you open to them?  I don't want to offend you or steer you away from what you are doing.  I just pray you are able to look at all possibilities. Although alternatives aren't always "proven" they sometimes work for some people.

 Love, hugs & prayers.

I am sorry to hear about your son. I too have a 13 year old boy, he was diagnosed last year with a brain tumor, the most aggressive there is. It is a terrible feeling to fear for the life of your child and I wish you both wonderful times, and, God willing, a miracle. My prayers and thoughts are with you.

J.