Saturday, August 17, 2013

100-wishes quilt

In the mist of worries, anxieties and fear after Joey's recent scan, we received the most precious gift from friends and people we never met. One hundred family and friends donate a piece of fabric each along with a written wish for Joey. The quilter, a lady from New York, put all the squares (there are actually 120) into a gorgeous quilt. My friend, who came up with this idea, put the fabric samples and wishes into an album. There are quote, joke, Bible verse, poem, a saying or a wish from the heart.
When we opened up the quilt, everyone was amazed by the beauty and workmanship. Joey saw violin, gator, Chinese characters, panda, Chinese food, soccer...all things he loves. The back of the quilt is dragon, which is symbol of strength, good luck and wisdom. Joey can't wait to check out the fabric and wishes in the album by his friends. He read the album the whole night.

No words can express my thanks for people who made great efforts in this quilt. It lifted up the spirit of the whole family. When I feel down, I read the album. When I am worried, this quilt becomes my cozy comfort. May the luck, energy and good wishes from all the families and friends who contributed to the quilt surround Joey. 

Life is bitter sweet. 

Sunday, August 11, 2013

Thank you, Blue Skies!

Two weeks before Joey's scan, we went to Blue Skies Ministries, which is a week long family retreats to bring the hope of Christ to families living through the challenges of pediatric cancer. I hesitated first when this opportunity came because I don't know what to expect when he sees other children with cancer. He actually never saw one, without hair or with port, in the clinic. Will that scare him? The night before the retreat, I decided to sign up at the last minute. We can't avoid this. He is 9 years old. This is part of his life and he needs to deal with it. 
To my surprise, this summer turned out to be his best summer because of Blue Skies. Joey said, "Blue Skies is the best week ever in my life!" Thank you all, Blue Skies volunteers, for bringing tremendous support, comfort, fellowship, fun and the love of God to my family. Joey made so many friends and so did I. Blue Skies is in our wonderful memory.
Day 1
When the car arrived in the facility by the ocean in the quiet city of Port St. Joe, we saw people wearing Blue Skies shirt cheering. Got off the car, we were surrounded by big smiles. Joey was excited. I saw my mom tearing up. She doesn't know any English. Love is universal, no matter what color the skin is and what language we speak. I smelled the air of the ocean and God's love is in the air.
After dinner, we joined the lantern release. 12 families lighted and released sky lanterns. Gone with the wind is our worries, fear, anxiety... 
hula hoop race
Dear Lord, we are throwing our burdens to you. No matter how huge the burden is, it is never going to be bigger than you. Your love NEVER fails. Please heal our hearts. We will suffer well. We will suffer well together.
Day 2
While Joey was having fun making new friends, we met other parents sharing our journey. Every time when we sat down and got ready to talk, I saw tearing eyes. Every family's story is so different, yet the spirit is the same. These families have been fighting for years. I admire their courage, faith and strength. I sobbed my heart out when they talked about chemo, surgery, pain, radiation, drug, side effect, relapse...I hate it. I just hate it so much. Cancer, you mess up these people's life. You take away so many things from these children: their physical abilities, food they love, graduation, even friendship. But you can't take away their smile. I wish you would vanish from the face of the earth and we would never need to utter the word again. I wish these children could live with their healthy bodies with loved ones, not to fear of you coming back. 
Day 3
This is Joey's first horse-riding experience by the ocean. He is just so excited. These horses are well trained. Joey feels very proud of himself.
Walking behind them on the beach, I saw the coming storm. But no one cared. They were laughing and moving forward, with confidence. They are not afraid, even big waves are pounding and clouds blowing wind. They would never fall.
Day 4
Beach is always Joey's favorite family time. He still takes chemo pill during this trip, but his energy is contagious.
I forgot the name of the game. We were doing flour fight on the beach.

Day 5
Today is Joey's first experience of snorkeling. We caught some sea creatures that we never see before, like puffer fish, sea dollar. The other group even saw shark.

Look at what we found!

Day 6
Kids put on a huge parade today. They decorated their scooters, bikes, wagons with shinning ribbons and put on face-painting, necklaces, bows to show their love to their country. Local police cars sounded the sirens to start the parade. 

Day 7
Time to say good-bye to our new friends. Joey asks when we can come again. I feel released seeing him enjoy playing with kids of same disease, but do not feel scared. I hope he can understand he is not along fighting. Life is tough and we will struggle. Or we can choose not to, but to enjoy the blue sky everyday.
Thank you, Blue Skies, for your efforts to provide families of pediatric cancer with fellowship, love and amazing support!

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.