Tuesday, April 15, 2014

Please sign this petition!


Joey Xu is a fourth grade student from Gainesville, Florida.  He is an artist, plays violin, and loves science, math and reading.  He is also a Boy Scout and an avid origamiist.  My son also insists that I tell you that Joey is really fun and kind.

In March, 2013, two weeks after his 9th birthday, Joey Xu was found to have an abdominal mass on his left kidney. His diagnosis was a form of  kidney cancer that is so rare that there are no pediatric specialists for this type of cancer in the country, and no standard treatment protocols.  Even after a year of treatment, including 2 major surgeries, several courses of chemo and other drugs, his tumors have grown and spread.  He now has tumors throughout his chest, abdomen, pelvis and neck.  They are affecting his ability to eat, and will soon affect his ability to breathe. 

However, a new line of immunotherapy drugs that target the type of tumors that Joey has (tumors expressing PD-LI) are being developed, including one called Nivolumab by Bristol-Myers Squib, MPDL3280A from Genentech and MK-3475 from Merck.  Nivolumab is already in trials and saving the lives of adult cancer patients.  Pediatric trials of Nivolumab were due to start in March, but were delayed until October, and the aggressive nature of Joey's tumors mean that he can not wait that long for access to the drug. Genentech has an adequate supply of MPDL3280A, but both companies need to be pushed to let Joey use them.

Joey's doctors  at Shands/UF and the Cincinnati Children's Hospital  and an immunotherapy specialist at Harvard have determined that his tumors are likely to respond to Nivolumab or MPDL3280A and his oncologists are willing to oversee compassionate use of these drugs.  His family fully understands the risks with experimental medicine, but they have nothing to lose, and much to gain.  

Please sign the petition, forward to your friends, and help publicize Joey's story. Hopefully Bristol-Myers Squibb or Genentech will grant compassionate use of one of these new drugs to Joey, so that he can continue to grow, and play, and learn, and do all the other things a 10-year old should do.  

Please share widely right now! If you have any connections with media outlets that can help us get this link out to more people, or to the decision makers at Genentech or Bristol-Myers Squibb please leave a message at Joey's Facebook page https://www.facebook.com/xp11.2TFERCC or email Joey's mom, Kathy, at kathyoasis@yahoo.com

Monday, April 14, 2014

Compassionate use of drug

Joey needs your help. This is how bad Joey's tumors look. The solid black parts are brain, heart, bladder, etc and all other areas in tummy, plevis, chest, airway, neck are his tumors. All these tumors are eating out his energy, nutrition and his tiny body.
Now there is one drug, a promising new drug, can possibly save his life. It's called Nivolumab from Bristol-Myers Squibb Corporate. It's one of the anti-PD-1 or anti-PD-L1 immunotherapies. This drug has saved the lives of many late stage adults RCC patients. The pediatric trial of this drug was supposed to start in May, but now postponed to Oct. We cannot wait for the PD1 trials to start in children as they keep on being postponed and Joey needs treatment urgently. A lab in UF tested both Joey's primary tumor and lymph node tumors, they all tested positive to PDL1. His oncologists in Cincinnati Children's and Shands and an immunotherapy specialist in Harvard believe the anti-PD-1 or anti-PD-L1 immunotherapies, including Nivolumab, are the most promising option for Joey and they will request the compassionate use of the drug from FDA.

For the grant of it, there are two important things: The drug company must agree to allow the use of their drug outside of a clinical trial. The FDA oncology medical officer in charge of overseeing the new drug’s development must approve the use of the drug. My dear friend, who is a lobbyist, will contact Florida congressmen and senators and the general attorney of Florida and they will send my letter to the drug company. So please, if you happen to have some connection with government or this particular drug company, please contact me. Please spread the words. This is a very hard and long process, but we will try our best. I probably will run the social campaign, newspaper, TV station and online petition, anything we need to do. If you have experience or any suggestions, please let me know.

This is all very overwhelming to me and I hear the clock clicking. Joey is not doing well. He is very tired all the time. When he eats, he puts his hands on the stomach to make him comfortable. I can literally feel his tumors in tummy and neck. They are bigger. They are aggressive. Dr. worries about tumors by his airway and asks me to watch his breathing. I want to pull him out of school and rest. But he doesn't want to miss FCAT again this year. So I took him home after the test. Looking at his report card, I can't help crying. All "A", he never bring a "B" home despite of so many absent and tardiness. I can't watch him eaten away by tumors knowing there is a promising drug out there, but we can't get it because of the system.

Please help us, any suggestion is appreciated! Again the drug is Nivolumab from Bristol-Myers Squibb Corporate. I need contacts in the government and this drug company. Thank you all for your supports!

Tuesday, January 28, 2014

PEComa?

I never expect to get another name of Joey's cancer after I sent his slides to Dana-farber, NIH, Children's oncology group, etc. tRCC is rare enough for me to find patients and treatment plan. As I continued to look for answers, I finally decided to send his slides to the most renowned pathologist in John Hopkins. Result came out it either PEComa or tRCC. I was shocked. The pathologist confirmed: your son's tumor is challenging and I can't give you a sure answer. 

I searched PEComa and found a long post from adult PEComa patients all over the world. It is an even more rare tumor than tRCC and there is no case of pediatric PEComa reported in this country. They mentioned two names. I contacted one of them and unfortunately he doesn't see children and he assured me that he never heard of a child who has PEComa. Then he referred me to a pathologist in Harvard who sees PEComa.

I called to have Joey's slide sent to Harvard. The lady in pathology office recognized my voice, "It's you again!" I feel very appreciated they are patient with me and always sent his slides without delay. They almost ran out of tumors after I sent them to 7 different institutes. 3 days later, Harvard sent me the report, it is PEComa. Reading the report, I couldn't believe my eyes. Another name? How about prognosis? treatment plan? is it genetic? All the terrible ideas came to me. 

In the next 3 days, I have another file of pediatric PEComa I could find in literature, none in this countries, but some in Asian countries. No treatment plan is clear and surgery is the only curative method if the disease is local. By this point, Joey has went through 5 months of oral chemo and 2 cycles of IV chemo. They both failed him. I'm mentally exhausted. We know so little about his disease since either is so rare, but in the other way as parents, we know too much, immunohistochemistry, target therapy, immunotherapy, etc, which scares us.

I decided I'm done sending his slides for more opinions. Human being doesn't have an answer. Joey's tumors overlap both cancers and the treatment plan needs to cover both. The only choice is to keep trying. Keep trying, keep trying until we find a cure someday. We will never give up.

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.