Tuesday, August 19, 2014

First day of 5th grade

He made it to 5th grade, which dr. said he can't. We are living every bonus day. Thank you, God, thank you, my friends!

On the first day of school, I am grateful, yet devastated as his tumors started to grow again, with more mets in the liver, which I am kind of expected because he has more pain recently. I have to give him morphine everyday now. He would rather pain, but not take morphine because it makes him constipate. He has a high tolerance of pain. After school, he was extremely tired, yet happy. I asked him about pain, he smiled and said, "I pain, but I just didn't tell anybody."

My heart aches, aches so much. Why life needs to be so hard and painful? But I can't fall, not a day for him because my child's life depends on our efforts, our fight, our courage, our determination.

I sent Joey's fresh tumors to a lab in Houston for tumor protein expression testing. After more than 3 months of testing, they sent us a 20-page report, with a list of suggested drugs. The report even explained why the prior drugs failed according to the test result. I shared the report with Joey's oncologists, no one is serious. "Cancer is tough, it is not as easy as picking a drug to target the protein tumor expresses. There are too many variables in the lab." I agree with them. The other oncologist says his patient had this type of test done before, but no one has luck.

With more than $6000 spent on such a report, yet no one cares about the result? I kept looking and think of a lab researcher I met last year. He is the most compassionate pediatric lab researcher I know. He keeps reminding me when fighting with a rare cancer, you need to establish a relationship with a proactive medical team. I realized what we need most dealing with such a rare cancer, is someone who is proactive, caring and compassionate, not necessarily someone with a big name. Who is such person?

He suggested someone to me and I flew all the way with Joey to meet him in Cleveland clinic. Everything here is different, from social worker, nurse, to the oncologists, everyone is so professional and passionate! I was excited. However, he is not a kidney cancer specialist. He reviewed the lab report and suggested something we never try before, a drug cocktail. He said Joey only responded to a single drug for a short period of time, with such case, he would do drug combination. He base his choices on the lab report and discussed the case with the tumor board. He suggests blood work every week to supervise the side effects, adding a second drug from half dosage up, then adding a third, then a fourth. He also said, without too much thinking, PD1 (the drug we petition) is the best option for Joey.

I came home with the determination that we would do it. Yet everybody else is against it. Yesterday we had a talk with the local oncologist. She is firmly against this idea and the other two oncologists who saw Joey before both don't agree because of the risks. There is no data of these drug combination with children and they think Joey is too weak to try.

Here we are again, tortured with the decision. More drugs means more toxic body, yet maybe a new chance. The oncologist in Cleveland clinic said, "The chances are very small to win against this disease. However, if we are on the same page and concentrate on finding the right drug, exchange thoughts and data, then I think we have a chance."

God, please, please give me some wisdom. We can't get the drug we want. But how can I help him hang in there until it is available?

1 comment:

  1. Hi
    Totally understand what your are undertaking. My Mom just got a cancer. As families, every decision is so difficult and tortured. Anyway, be strong and supportive. He is still young and he deserves to try more as long as you whole family think about it and agree with what you will take. Then you won't regret it in future.
    Pray for Joey!