Thursday, May 16, 2013

Conference

It's my first time in DC. Think of bringing Joey to DC visiting museums many times, but never see myself in DC alone. The internatioal conference on pediatric renal tumor is here with a family day for the first time. Thursday's evening reception was held in the Children's National Medical Center, from where I can see White House and Lincoln Memorial. But I have no mood for the great view. 
Pediatric oncologists from States, UK, Germany, Canada, Israel,  Sweden attended the conference. Joey's oncologist is the panel member. I can see their passion to find a cure for our kids. Everyone is excited exchanging ideas, talking about new drug development and future cooperation. There are 45 families in the conference, only 3 have children with the same subtype as Joey.
Friday's conference is very technical. I wish I had a wikepedia machine installed in my head. Honestly, I have no idea what they are talking about. By reading the abstrat, I understand they discuss the statistics, implications of their research, new drug, etc and they question each other. Afternoon session is less complicated. It's nice to see doctors from all over world agree to work together. They call for parents' power to put forward the research. 
Sitting among these parent advocates, I felt their frustration and pain. We are at the mercy of the drug companies. Whether or not they decide to produce a new drug depends on how much profit it will bring. In the past 30 years, only one new drug was developed to treat children with cancer. Two-thirds of childhood cancer survivors suffer from severe, chronic medical condition or secondary cancer. 
Friday night, I had dinner with other parents in the city of Bethesda. It was a fancy restaurant with a huge outdoor area. The dinner was full of laughter when they talked about the crazy things they did after the diagnosis. We looked like happy people joking and laughing out loud, but no passer-by would know the great pain behind. Their stories are inspirational. One dad shared how he found a research in the other country, brought that study to the attention of doctors here, push the drug company and move it toward a clinical trial phrase. These people are truely heroes of their children.
Most of the parents at the table saw how their child suffer from the chemo. When they described how they couldn't recognize their own child during the chemo, I cried. My pain is nothing compared to theirs. How much faith and strength it takes to see their own child turn black, skin fall off, mouth swollen as big as head and hair gone. I ask myself: if this happens to Joey, can I be as strong as them? I can't even imagine that horrible picture. 
These people are superparents. One old couple adopted 7 children, one of them had the same type of cancer as Joey and the other boy has a life-threatening disease. They adopted the girl when she had the cancer. Another mom has 8 children, 4 of them are adoptive and one of her biological child has cancer. She often grabs all her kids in car and drives to the hospital. In spite of all these, they never stop fighting for their children. They keep asking questions and finding best treatment possible.
I couldn't sleep that night when I thought of the suffering these families have been through. I cried out for hope, for magic healing of these children. Jesus, please help these parents, help us go through the uncertain future. Everyday, 46 children and teenagers are diagnosed with cancer. Jesus, I want to hold your hand to stop childhood cancer. You have the mercy to my boy so he has strong spirit to fight. Please give mercy to other children who are going through chemo. Please wrap your arm around their parents. I pray that chemo saves their life and brings back a healthy child to their family.


3 comments:

  1. Joey is very happy and active. I gave them an extra "Chinese class" when mom was having a meeting. He knows so much on Bible and old Chinese stories. Great boy!

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  2. "And it shall come to pass that whosoever shall call on the name of the Lord shall be delivered"--(Joel 2:32).

    「那時,凡呼求耶和華名的,就必得救。」-約珥書2:32

    http://streams365.blogspot.com/2013/05/53.html

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  3. Kathy,
    Thanks for sharing Joey's blog. Your words are beautiful! The cancers can be different, but the pain is similar for sure. Thinking of you guys and will continue to pray for healing, strength, peace, and hope.

    Rebecca Floyd (Franklin's mom)

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