Friday 12 October 2007

Lisa - Jonathan's Mother

Hi Chalu Obba,

First, I just wanted to say "Thank You" for taking the time to make the website for Jonathan. He is taking a nap right now, but as soon as he wakes up I plan on showing him all the messages that he's already received.

Jonathan is 5 years old and was born on May 21, 2002 the year of the white stallion. He is definitely a very smart special boy who has a laugh that is soooo contagious that nurses and doctors have said that we should bottle it and sell it. He is the 2nd of my three children. His brother Justin is 6 1/ years old and his younger sister Jena is 3 years old. Jonathan loves Thomas the Train, Bugs, and Insects. He wants to be a bug doctor when he gets big.

Jonathan was diagnosed with Stage 4, Pancreatoblastoma, a very rare type of pancreatic cancer in March, 2007. The cancer is so rare that there are only 200 cases reported and there is no protocol or roadmap like other cancers. Children's Hospital of Philadelphia which is the #1 pediatric cancer center for children sees about 700 pediatric cancer patients per year. Of this 700 they will only see 1 Pancreatoblastoma patient about every 2 years.

His tumor which started in the pancreas spread into a tumor in his abdomen. The tumor encased all his major blood vessels that connected the liver, stomache, pancreas, and gall bladder. The doctors could not remove his tumor in the beginning because of the danger in position. Jonathan has received 6 months of chemotherapy and the tumor shrunk enough so that they were able to resect the tumor. On September 26, 2007 surgery was performed and the tumor was resected. However, after the pathologists reviewed the tumor, they do not believe that they were able to get all the cancer cells in his abdomen area. To make things worse, Jonathan also has cancer in his lungs.

Currently he is going to be starting radiation at The University of Pennsylvania Hospital. The radiation will be done on a daily basis for a period of 5 weeks. The doctors have not yet decided what they are going to do about the cancer in his lungs.

I do also have another idea that I have been working on and if it does go through, I was wondering if you could help me with another website. I am trying to raise money to find a cure for pediatric cancer. I'm thinking about calling it Bill of Hope.....Even if Jonathan's cancer is cured, Pancreatoblastoma has a very high recurrence rate. There was a trial done and the average expectancy of a Pancreatoblastoma patient is somewhere between 2-5 years. Therefore, even if Jonathan does beat this cancer, I am running against time to find a cure before another recurrence may occur. Would you be able to maybe help me with this website?

Thank you.
Lisa

PS. Sorry folks. I thought he was younger. You know that Asian thing. They look younger. He fooled me. Obba means old brother. We are all related. Are we not related?

I lost a cousin to leukemia. My parents' generation did not have cancer just high blood pressure. My grand father is 97 years old on my mother's side. When Chul Kyung passed away, it was a private matter. I think differently this time. All the best - Chalu the webmaster.





No comments: