Sunday, December 8, 2013

Thanksgiving

For many people who immigrate to this country, Thanksgiving is a lonely holiday. We are not alone, but we are lonely. No matter how successful our career is, how many new friends we made, how big the dinner is, how thankful we are living our big dream, we are lonely. I am lonely when I see my American friends keep posting photos of family get-together on facebook; I am lonely when I see people hugging families at the airport; I am lonely when the roasted turkey reminds me of my mom's cooking...

This year's Thanksgiving is extremely hard for us. The day before Thanksgiving, we flew back from Cincinnati with the heartbroken news of his tumors growing. Although Joey is not fighting alone and the community has been so kind, we are combating the loneliness of a rare cancer, only 64 cases in 6 years in America. This loneliness, fear, anxiety, uncertainty of future deprive me of a heart of appreciation on Thanksgiving. I'm more depressed and miserable than being thankful. 

I called my mom in China. She is the only one in my family who knew the situation. My father doesn't know. I told her the bad news. "Calm down. Continue your life." She said. "Do what you can and take care of him. Leave other things to the doctor. Fear doesn't help you or Joey." I cried hard and said I want to go back to China with Joey in summer. "Don't plan. Live one day at a time." Mom is not a christian, but she said, "Pray everyday with Joey. Pray hard. Reflect on what you said and did." Mom is a positive, determined and wise woman. I never see her panic in any circumstances, even when Joey got diagnosed. 

We didn't eat a big Thanksgiving dinner. Instead, we ate the leftover from lunch. No strength, feel empty in heart. Someone in facebook posted a video of Autor Anne Lamott's talk with Oprah. Anne says it's easy to thank God when life is going well. However, when times get tough, feelings of anger or complete silence can also act as prayer - as long as you're trying to tell the truth of your heart. Interesting. I never saw prayer in such a different form.

I remember dad said this before, "Life is a beautiful struggle." I pray some day I can really understand the beauty of this hardship. When time is rough, I lost my identity in Christ. We are from you. Joey comes from you and is a spark of your glory. We are your children. We are blessed in many ways, but I get lost. I know some day when I look back on this, I would see life at a different perspective and this journey a blessing. Pray for the day I could turn tears into smile and live a truly graceful life.

Wednesday, November 6, 2013

The Truth 365

Coming tomorrow, 11/6 at 10 AM! Over 600 organizations and thousands of individuals will be SIMUTANEOUSLY sharing a link to the video “The Truth 365: A National Priority.” Please take a stand for children with cancer and join this international effort. All you have to do is share the video on Facebook, Twitter & any other social media platform you use. Also, please ask your friends and family to do the same thing. The world needs to know the truth about the lack of funding for childhood cancer research.

On Wednesday at 10 a.m. in your time zone, please share the following link:

If you tweet about it please include the hashtag#thetruth365film

An example post would be:

Please take a stand for these kids! Watch and share this video!

video

Sunday, September 29, 2013

Thank you all for your donation!

We are indebted to every one of you who helped support us during the initial part of this battle with Joey. Because of your generosity and donations, we were able to provide Joey with many of his medical needs while facing physical, mental, and emotional challenges. We are overwhelmed by your thoughtfulness and very thankful that our financial stress was lifted because of your help. Joey is thriving in spirte of his cancer, and we pray he continues to respond to his treatment. For now, we have removed the donation button on the page - we pray we will not need any assistance again in the future, but are very grateful to know that support is there if we do. Again, thank you from our hearts!

Friday, September 13, 2013

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.

Saturday, September 7, 2013

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.

Monday, September 2, 2013

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.


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.
 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. 

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.

Sunday, July 14, 2013

Friendship

Joey had the happiest two weeks with his friend Mingkuan. The boy flew all the way from China with mom to see him. He had the best time ever since the diagnosis and so did I.
I never see two 9-year-olds can be this childish. They can sit there and do nothing but tell silly jokes for an hour, rapping or rhyming in Chinese. They share their "junk" from their treasure box. They even dance Gangnam Style frantically. Joey would rather skip all his camps to spend time with his friend.
Mom is also my good friend. Her personality, her story and her love for her child inspire me. She encourages me to escape from the endless pains and worries, living a normal life, for Joey, for David and for this family. How I wish Mingkuan and mom can stay here forever. 
Gator stadium
Bat house
Farmers market
Kennedy Space Center
Disney Waterpark 

Epcot

Walking to the future
 The night before they left, Mingkuan cried. Joey pretended he was not sad. The next day, they said good-bye and hugged. After they left, Joey kept saying," I don't want him to go." Then he asked, "When can I see him again?"
Dear Lord, thank you for wonderful friends. Thank you for the precious time Joey had with Mingkuan. I pray that you can give him more days, months, years to be with his friend. I pray that you can give his friend an opportunity to witness how he wins this battle. I pray that these two boys will grow into two fine young men supporting and loving each other. In the powerful name of Jesus, Amen.

Wednesday, June 19, 2013

I can trust God...

At Sunday school today, each kid got a card to fill out. It says I can trust God... This is what Joey put in his card:
I can trust God...
Medical problem
Safety
Siblings
Next year in school
Education

I was surprised he put medical problem first. I had thought my energetic, playful and laid-back boy doesn't see his health as an issue. He did realize life is different now. If I were given this card, I would put exactly the same thing except that I would add "Joey's" in front of each of them.
On the way back home, I heard the song He Said in Joy FM, "I won't give you more than you can take..." I heard the same thing in church before and more now: "God will never give you more than you can handle."
When I first heard it, I have doubt. Hmmm... What about those who lost their loved ones in an accident? Now in the time of pain, I have more doubts. What about those parents who lost their children in the fight? And what about me?
So I looked into the Bible and read it's from 1 Corinthians 10:13: No temptation has overtaken you except what is common to us all. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it. I read the chapter again and again and realized the quote is never in the Bible.

Why I have doubts? Because everyday I am learning the opposite is true.
If God is only giving me what I can handle, I'll never have to find God.
If God is only giving me what I can handle, I will stay in my comfort zone forever.
If God is only giving me what I can handle, I amn't growing.
If God wants to show his presence in my life, he is going to give me more than I can handle.
God is ALWAYS giving us more than we can handle. That’s because we were never intended to handle it. 
But the good news is He doesn't give me more than God and I can handle! He is bigger than anything I can handle. He carries all my weigh. His plan is huge!

I pray I can have simple faith like Joey's. Faith is faith. It is that simple. Faith is not a system of rewards of challenges and payoffs. It is a lifelong journey of fighting distress and moving forward with hope. The Bible reminds me while Joey's disease does not magically disappear because we have become followers of Christ, but we are promised that in the sufferings we are not alone. God does allow me to suffer things I can not bear...alone. And I do not have to bear them alone because our family is surrounded by a community of love that comforts us in the time of hardship.

I still love the song He Said and my heart is filled with incredible love of God when I listen to it. Things will happen in life that will test my faith, but I remember God always loves me.

Wednesday, June 12, 2013

Break

Joey finished first month of oral chemo pill and is now on two weeks of break. His face looks yellowish, which is to be expected. Another adult patient who is taking the same pill warned me that the hair would turn to white some day, even the eyebrows, just as his. That weird picture popped up in my head, but was gone quickly. Life is too busy to think too much ahead.
I feel a little bit relaxed thinking he is on two weeks off the toxic drug. In these two weeks, I can give him supplement that I won't worry too much about the interaction. 
All the tumors in Joey's body are in the lymphnodes. I kept thinking about if there is anything, either exercise, message or acupuncture, can help to make his lymphatic system healthy. I googled every day, hoping to find something. To my surprise, I found it! The best exercise for the lymph system is rebounding
"Lymph nodes are like holding stations that filter the lymph fluid. Every day we are bombarded with toxins in our environment and in our food which is why detoxification is such a critical process in your body. If the detox process is hindered, toxins will build up in your body eventually causing acidity and toxemia. These are the root causes of nearly all disease. One of the lesser talked about benefits of exercise is that it moves your lymphatic fluid, which promotes detoxification in your body. Rebounding creates an increased gravitational load and positively stresses every cell in your body. As a result, it strengthens your entire musculoskeletal system and it promotes lymphatic circulation by stimulating the millions of one-way valves in your lymphatic system."
Then I kept searching to see if this is just media hype. I read many cancer survival testimony and saw the word rebounding again and agian. I figured since so many natural survivors and health practitioners were doing rebounding, it worths a try.
We can't afford a rebounder, so I bought a trampoline from walmart. Joey loves it! He is always a jumper. Classmates call him jumping Joey.

I love to see him jump. The house is full of energy, because of Joey.

Tuesday, May 28, 2013

Oral chemotherapy

Joey has been on oral chemotherapy drug for 3 weeks now. It's a small capsule once a day. The immune system won't be down too much as the conventional chemo, so he can go to school and do things normally as before. 
On Saturday, he had a fever. I freaked out. He has been coughing and has stuffy nose for a couple of days. I dread fever may come. I know a fever could be dangerous during chemo. I called the oncologist right away and we were at the ER 30 minutes later. Because he has a port in his body, they need to find out if it's line infection, blood infection or flu. After blood work, urine test, X-ray and nasal swab test, it turned out to be flu. The oncologist gave us the presciption of 2 Tamiflu pills a day for 5 days.
At ER after a fever

I always bring with me names of drug Joey can't take because he has only one kidney and also names of those might interact with his chemo pill. I checked with the ER doctor and the oncologist and they said Tamiflu is fine and he needs it. Four hours later, we were at the CVS. I double checked with the pharmacist and showed him all the names of drug hard on kidney. He said immediately, "then I would suggest one Tamiflu a day, not two." He paused a second then said," If it's my child, I would not use Tamiflu with him. It doesn't worth the risk." "Why?" I asked. "A flu is a flu. All the studies show Tamiflu only shortens the flu one day." But the ER doctor and oncologist know about Joey's situation and recommended it. I asked the pharmacist to call ER to make sure. He came back saying the doctor recommended at least one capsule a day.
Now what should I do? Take it or not take it? The instinct tells me not to take it and Luke's first reaction is also not to take it. In these two months, the biggest thing I have learned from other parents is that you have to be your child's advocate. If your gut tells you something isn't right, don't stop when a Dr. downplays it. A mom once told me that doctors do not know everything. You know your child far better than they ever can. There is a difference between paranoid worry and instinct. 
But at what point I need to trust my instinct and when I need to trust Dr. I follow mommy instinct to choose an oncologist, a treatment plan, and which drug he needs. What if my instinct is wrong?
I went home googling the interaction of Tamiflu and the chemo pill. I actually found a study about interaction of these two drugs. After reading that study, we decided to not to give him Tamiflu. But I was scared.
The fever was gone the next day, which surprised me since it's a flu. We had a quiet long weekend and Joey went to school on Tuesday.  
I pray everyday that God gives us guidance that we can make right decision for him.

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.