Tuesday, August 19, 2014

First day of 5th grade


He made it to 5th grade, which dr. said he can't. We are living every bonus day. Thank you, God, thank you, my friends!

On the first day of school, I am grateful, yet devastated as his tumors started to grow again, with more mets in the liver, which I am kind of expected because he has more pain recently. I have to give him morphine everyday now. He would rather pain, but not take morphine because it makes him constipate. He has a high tolerance of pain. After school, he was extremely tired, yet happy. I asked him about pain, he smiled and said, "I pain, but I just didn't tell anybody."

 
My heart aches, aches so much. Why life needs to be so hard and painful? But I can't fall, not a day for him because my child's life depends on our efforts, our fight, our courage, our determination.

I sent Joey's fresh tumors to a lab in Houston for tumor protein expression testing. After more than 3 months of testing, they sent us a 20-page report, with a list of suggested drugs. The report even explained why the prior drugs failed according to the test result. I shared the report with Joey's oncologists, no one is serious. "Cancer is tough, it is not as easy as picking a drug to target the protein tumor expresses. There are too many variables in the lab." I agree with them. The other oncologist says his patient had this type of test done before, but no one has luck.

With more than $6000 spent on such a report, yet no one cares about the result? I kept looking and think of a lab researcher I met last year. He is the most compassionate pediatric lab researcher I know. He keeps reminding me when fighting with a rare cancer, you need to establish a relationship with a proactive medical team. I realized what we need most dealing with such a rare cancer, is someone who is proactive, caring and compassionate, not necessarily someone with a big name. Who is such person?

He suggested someone to me and I flew all the way with Joey to meet him in Cleveland clinic. Everything here is different, from social worker, nurse, to the oncologists, everyone is so professional and passionate! I was excited. However, he is not a kidney cancer specialist. He reviewed the lab report and suggested something we never try before, a drug cocktail. He said Joey only responded to a single drug for a short period of time, with such case, he would do drug combination. He base his choices on the lab report and discussed the case with the tumor board. He suggests blood work every week to supervise the side effects, adding a second drug from half dosage up, then adding a third, then a fourth. He also said, without too much thinking, PD1 (the drug we petition) is the best option for Joey.

I came home with the determination that we would do it. Yet everybody else is against it. Yesterday we had a talk with the local oncologist. She is firmly against this idea and the other two oncologists who saw Joey before both don't agree because of the risks. There is no data of these drug combination with children and they think Joey is too weak to try.

Here we are again, tortured with the decision. More drugs means more toxic body, yet maybe a new chance. The oncologist in Cleveland clinic said, "The chances are very small to win against this disease. However, if we are on the same page and concentrate on finding the right drug, exchange thoughts and data, then I think we have a chance."

God, please, please give me some wisdom. We can't get the drug we want. But how can I help him hang in there until it is available?

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!