Awareness? Action!

Didn't realize almost half of Sep. passed. Everyday I see other moms at Momcology group, facebook, caringbridge, etc spread words about national childhood cancer awareness month. But I didn't do anything. I feel guilty. One voice says, "Sep. is forever different because you are a cancer mom." The other voice says, "so what? People will "like" your post and even "share". Then what? Everybody needs to be back to busy life. Don't even bother to post." I have this mixed feeling until I saw this article tonight. It's a very powerful article. I cried hard when I read the words. I cried hard when I saw the precious smile of this little girl. Honestly, I feel exactly the same as this mom, but I don't have the courage to say that out loud. I don't have the courage to do something because I don't know how. I asked oncologist and he said, "Your job is to take care of Joey." My friends say, "Your job is to live a happy day for Joey." Deeply, I told myself, "Your job is more than this."
Here is the article:

Awareness... What a Bullsh*t Word

I'm sure the word "awareness" comes from back in the day, when no one spoke of cancer. The "C" word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn't have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn't even have been enough time for me to get her story out to you. So, awareness month was a good thing back then... hey, meet this little 3-year-old with cancer... Nope, wait.. She's already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You "like" a couple of Facebook posts about childhood cancer or maybe even "share" one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don't get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan's shorts were in NYC the other day... "Oh, no she didn't," you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children's cancer drugs aren't profitable. Ouch.

There is some awareness for ya!

So, back to my issue with this "awareness" word. The movement I want to start is this... Let's maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That's right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren't profitable.

Look at her picture when you walk out the door for your awareness. "Awareness." Check. But then, when you get in your car to take the kids to school, go to work, go to the gym... think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer "ACTION" Month. Do something that day that is action to save a child's life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can't think of something to do for 30 days? Email me, I'll help you with your list.

Cancer is an epidemic in this country and I'm confused as to why people aren't freaking out more than they are. Probably because they don't have it... yet. Or maybe because we are all so "aware" of cancer, but aren't taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just "SNAP," gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I'm aware. I'm aware that she's no longer with me. I'm aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I'm aware that Isabella should be in the third grade this year. I'm aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I'm aware that my 6-year-old, Grant, has nightmares about her. I'm aware that every day for the rest of my life I'm going to feel like there is something missing. I'm aware of a lot. So, the word "awareness" works really well for me in my life. Describe my life in one word, actually, and it's probably "awareness."

So, let's not make this month about just liking a Facebook e-card about cancer or reading a family's caringbridge entry and then walking away. Let's all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

Scan

It's our third trip to Cincinnati. We decide to travel there every time when Joey needs a scan. I am extremly anxious when the day comes. But Joey is excited. He just enjoys flights and hotel. I often wonder, "Does he ever worry about the scan?" He never mention a word about it. Instead, he is looking forward to the icecream. Cincy has best icecream in the country.

Got CT and MRI the first day. The appointment with the oncologist is in the morning the next day. I couldn't wait until the appointment. I felt myself almost running to the radiology department. Filled out a form to get a copy of everything. Printer was printing out the report. That printer was the slowest one I ever saw. The girl gave me 3 pages of report. I grabbed and read it. I could hear my heart. I was looking for the words I had been praying for every day. Praise Lord, I saw it. Decreased in size. I read those words one more time and compared the measurement. It's not a significant decrease, but all his tumor shrank. I could breathe now.

I ran out of the room and tossed the report to Luke. "I don't want to read the rest of it. I only know tumors shrink. Please circle those you don't understand and ask Dr. later." I was scared to read more because I don't want to see anything suspicous. Joey was playing games and didn't hear us. When Luke told him the result, he looked at me and said,"mom, you don't need to cry this time."

We saw Joey's oncologist and he is satisfied with the result. Joey will continue the drug until the scan 12 weeks later. Scan, scan, scan. I hate it so much. But we don't have other option.

For 6 months, we finally have something positive. It's not a huge one, but significant enough for us to celebrate. God bless my boy. May Him have mercy on us.

On the way back home, we went to the best icecream shop in Cincy. Joey was content.

Painting

I love love this photo by my talented friend. It looks like an oil painting. Use my friend's words:
this is a shot of Joey, a dear friend of my family, who is fighting cancer. The background is made from a flower vendor stall in NYC, and a few other bits. In making Joey partially translucent here, the intention is to show that the colors of imagination and strength which are inside him have a way of shining out and painting the world around him. he not yet ten years old, and he is already my teacher.

Joey loves to play colors too. I enjoy looking at his paintings, full of life, energy, vibration and beauty.

He loves his first oil painting of garden so much and asked me to put it into a frame.

Life and freedom

shapes and colors

He likes to use bright colors, through which I see his passion and boldness, just like his personality. I actually wish he could draw a picture of himself in the future, at a graduation ceremony, a wedding, even with children. I need that image so much. I want to embed that image into my head, so I won't feel fear the first thing when I wake up in the morning and let that fear empty me the rest of the day.
Just like my friend says, imagination is the power, no matter how old you are. I want this power to lead my life. If I don't have it right now, I need to create it, with my boy.

September: childhood cancer awareness month

did you know?
• The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

• Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.

• On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

• In the U.S., about 46 children and adolescents are diagnosed and 7 will die from a form of childhood cancer every single school day.

• The National Cancer Institute's federal budget=$4.6 billion. Pediatric cancers received less than 3% of it.

• Overall, one out of every five children diagnosed with cancer dies. In some forms of cancer, as few as one out of every five children will live.

• Childhood Cancers are cancers that primarily affect children, teens, and young adults.

• Approximately 20% of adults with cancer show evidence the disease has spread, yet nearly 80% of children show that the cancer has spread to distant sites at the time of diagnosis.

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.

 Album

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. 

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!

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.