The very sad truth of childhood cancer

When Chris Tomlin came to town last year, I was so determined to write him a letter. I wanted to tell him how his music touches my heart and impacts my relationship with God. I wanted to tell him how his music pulls me through the darkest days of my life. And I was determined to ask him if he could contribute a song in his concert to the children who are fighting cancer and to those who passed. Then I hesitated. I had never been so hesitated like this before. I hesitated. I hesitated when I pictured the concert in my head: At a concert to worship God, a concert to praise God, suddenly images of children with no hair appear on the big screen. This would upset everybody! Nobody would like to see this!

I shocked myself, even as a cancer mom, I feel guilty that childhood cancer will upset people! Then I realize this is why children cancer can't get funding. Because childhood cancer is so sad, it is so so sad, that people don't want to talk about it. Because people don't want to talk about it, we believe it is rare. Because people believe it is rare, we don't work hard to put money on research! This is the vicious circle of childhood cancer. This is the very sad true fact of childhood cancer!

Let's see how "rare" childhood cancer is. Each year around 13,500 children are diagnosed with cancer in the U.S. 35,000 children are currently in treatment for cancer. In the U.S., one out of every five children with cancer will not survive. Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

Let's see how we put our efforts to fight this No.1 disease killer of childhood in the U.S. Less than 4% of the National Cancer Institute's budget is directed to childhood cancer research. In the last 20 years, only two new drugs have been specifically developed to treat children with cancer. Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years. Many pediatric cancers, are terminal upon progression or recurrence.

Ever since Joey's diagnosis, everything in my eyes is sad. The same beautiful blue sky of Florida is sad. The trees at the front yard are sad. Flowers, birds, squirrels, everything is sad. Even the air is sad. Childhood cancer is sad, it is so so sad that a survivor's story will get thousands of likes, a lost life gets prayers, yet we expect the family to get over it. NO! They will NEVER ever get over it! The loss of a child to cancer is one of the worst tragedies a family can face. People put better words to comfort the broken hearts. "Too much suffering on earth." "Someday we will all be there." No matter what religion you believe, a child dies from cancer, not because God doesn't answer the prayers, not because this is God's plan, not because God's grace is not enough. A child dies from cancer because we don't do enough, because we ignore the fact that childhood cancer is NOT rare, because we fail our children! This is MORE sad than the childhood cancer!

When friends see me, they often tear up, hugging me, and ask, "What can I do for you?" I don't know how to answer. Now I have answers for you. My dear friends, it's time to take a stand. I'm writing this not for my child. I'm writing this for your child, your child's child. They deserve a bright future of dreams. They deserve equal opportunity to grow up like a kid. But who can make this happen? Not me, it is you! It is each one of you!

So here is my ice bucket challenge for you. September is back to school month. September is also Childhood Cancer Awareness Month. Think about those children who are in hospital going through chemo, radiation because of this hideous disease. If you can do one, or two, or even three of these things every month, every week, you can make a difference to save a child's life!

You can replace your profile picture with a gold ribbon in September;
You can buy awareness items to spread the words; (http://www.momcology.org/sitepage/awareness-items)
You can make a donation to a foundation like the St. Baldrick's Foundation, which is committed to funding the most promising research to find cures for childhood cancers;
You can sign up for race or walk to support Curesearch;
http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1092598&team=6078057
You can write to your congressmen asking for more government funds on childhood cancer;
You can donate to the MaxLove Project, which is a nonprofit organization that empowers families fighting childhood cancers and life-threatening conditions with whole-body wellness resources, education and research.
If you are an amazon shopper, you can select a childhood cancer foundation like The Ethan Jostad Foundation as your charity, go to http://smile.amazon.com/ and part of your spending will go to them;

There are many other things you can do every day in September to be an advocate for children fighting cancer. If you are willing, next September would be the month we see gold ribbons flying everywhere just like the pink ribbons in October. If you are willing, Empire building would light up gold for our children. If you are willing, government will finally listen to our voice. If you are willing, some suffering can be stopped and lives can be saved!

I never write the letter to Chris Tomlin, instead I'm writing this letter to you. Because our children are dependent on you. Because it is you that will make the change. I'm listening to Chris Tomlin's CD Passion right now and ask myself what my passion is. Since Joey's diagnosis, I have lost all my passion of life. Cooking, movies, reading, shopping...I can't concentrate to do anything I used to enjoy. All my passion is to find a cure for him. Yet where is the cure? If we ignore the very true fact of childhood cancer, if we remain indifferent to our children's suffering, if we don't advocate for them, there would be no cure for my child, there would be no cure for your child!

Dear Lord, your grace is ENOUGH, but our efforts is NOT. I pray for miracle, pray for healing and pray for strength. Miracles do happen, but they happen for a reason. I don't know where you will lead me in this journey, but I know you will empower me with your words. Bless our children, Lord, and watch those with you.

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?

Please sign this petition!

Please grant 10-year old Juntao (Joey) Xu compassionate use of your anti-PD-1/L1 immunotherapy drug.

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

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!

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.