Thursday, August 1, 2013

Tumor progression

Woke up in the middle of the night and cried. I felt so scared I may lose my boy some day and I held on tight to the sheets and cried while everybody else in the house was sleeping.
When we are enjoying the summer, Joey's tumors are growing quietly and agressively. CT scan shows all his tumors in chest, neck and stomach are bigger. His body doesn't respond to the oral chemo after two months. Surgery is not an option. Today when the Dr. showed us the images, I wanted to scream. I wanted to close my eyes and never need to see those creepy pictures. I felt abondaned again by God.
Why? I have been trying so hard to get a sense of peace and faith. Dear Lord, please don't let them fade away. How long do I need to be tested?
Came back home from the long talk with the Dr. Joey was jumping up and down at the door and asked me why it took so long. I told him there are still tumors and we may need to switch to a different drug. He said, "no wonder I didn't feel anything from the drug!" 
I ache, even he is still smiling the big smile like nothing happened. I am trapped into the whirlpool and all the emotions of fear, hatry, regret came to swallow me again. In the past three months, I took away the food he likes and made him drink smoothies out of 17 different fruits, vege and nuts almost everyday, which he hates. He swallowed 4 supplements everyday and didn't ask what they are for. He does Yoga once a week, which fortunately he likes. He even agrees to do tai chi with me although he thinks it boring and doesn't undertand why. I couldn't ask more from him. Sometimes when I am overwhelmed with all the information online, I began to loose common sense and believe stupid diet kids hate. Now I regret and feel suspicious if I gave him wrong food or supplement to make his tumors grow.
Shands offers a phase I trial, which I don't quite undertand the rationale because it targets general cancer and the research shows the drug doesn't work with RCC patients. Joey's oncologist in Cincinnati is on vacation. I emailed him and he couldn't make decision until he sees the scan. Dana-farber's Dr. is on vacation too and can't be back until Aug. 20th. 
I don't know who else I can talk to. I called NCI. Someone picked up the phone. It turned out he is the pediatric oncologist just joined NCI in July. He asked me to send all Joey's information. By the end of the day, he emailed me another clinical trial.
I don't know what comes next. It's midnight now. I just want to sleep. Sleeping is the only way I don't need to face this.


  1. Hi, I am following the blog to keep track of Joey's sickness and has been touched by the braveness your family has. Being a mom, I can totally understand your pain, just hang in there, be strong, love your boy as much as you can. You are the best!

  2. I'm so sorry Kathy! My heart is breaking for you. Please know that we are continually praying for Joey and your family.

  3. Don't feel bad about all the great efforts you are trying to do to help him. Hang in there and do what you can. But never regret any decision. You never know whether different dicision is going to lead to different path. Just focus ahead and never look back. What you are doing for him today is going to be the best for him no matter what !! Big big blessing!!

  4. What a strong beautiful boy you have, Kathy. You continue in our prayers and love. We're praying for miracles. You are such a strong, amazing Mom. Have no regrets.

  5. Kathy even Jesus felt abandoned and betrayed by God, and wept, and cried out. Don't judge where you are in this, be where you are- every single last thing you feel is valid and right. This is your truth that you are living, and it is hell, and none of us for a second can even pretend to understand what you suffer in your heart. You have done the best by him, and his diet did not make this cancer grow - in fact, most of what you describe would be very, very healthy to keep his body strong. Know that you are held so closely in my heart, and I count you among my friends, and I continue to send you positive energy and prayers. Much love to you and to Joey and to Luke.

  6. I think what you've done is absolutely right. Don't hesitate and just fight. You'll succeed. It might be possible that the herbal treatment is the right way and you've already slowed down the tumor progress and the next step it will get killed.

  7. Your best is different at different times and always changing. You are learning and researching and working every day to do the best you know and it matters! On days you can't read another word about it, or think another thought, that day's best is good enough.

    What strikes me is the way you are teaching even through struggle! You are sharing raw pain, and tattered emotion and you're showing others a path not many will walk.

    You are a beautiful person and Joey's perfect mother!