Saturday

Today is a busy day. Joey is very excited he can make it in the math contest. When we were in hospital, nurses and doctors asked him what his favorite subject is, he always said math. Today both 3rd and 4th graders took the same test and the top 12 would be awarded. When he came out, he said, "I think I got it all correct." I actually talked to Luke before. We think we have a concerited boy. He is like this all the time. Before any contest, running, violin, math, he always says he will win the first prize even though he is very clear his friend is much better than him. It turned out he won the 12th place. He is so happy, "At least, I have a trophy!" This is him. He forgot what he predicted right away.

We went to Chinese school after the math contest. I teach Joey's 3rd grade Chinese. I miss kids in the class. They are wonderful children coming to school every Saturday when their friends might enjoy weekend with family. I try to make the class fun and let them believe it worthy to spend two hours with me on Saturday. Today's lesson is a classic Chinese story about an old man in ancient time who was determined to move two mountains in front of his house by digging the dirt away every day. I aksed them, "Do you think he can make it?" Joey said, "Yes, with God's help!" After reading the text, I asked them what they figured out from the story. Joey said, "Hang in there, never give up!" Aother kid said, "Trust yourself." At that moment, I was thinking: sweetheart, that is exactly what I want from you.

Parent in the class brought a cake with Joey's name on it. Children in Joey's music class brought flowers, balloon and card. We have a wonderful community in Chinese school. Thank you, my friends! 

3rd and 4th opinion

When things are a little bit quiet down now, I keep looking for 3rd or 4th opinion. Shands and CCH have different diagnosis and treatment plan. I need a 3rd and even 4th opinion to give me an assurance. Luke and me have probably found all we can find online about this type of cancer. We read the paper with wikipedia and are not so sure how much we understand. Since there aren't so much I can find from the official paper, I am thinking about patients. I believe cancer patients and their families are the ones who are knowledgable about everything, from who is best specialist, new drug, clinical trials to diet, alternative treatment plans, because they are the ones fighting for their lives.

Every night, I searched in different cancer forums to look for patients of same subtype. It's not fun to join a cancer forum. It's heart-wrenching to see someone posted a message, then a few months later that person passed away. But I have to read them. There are posts of encouragement, posts of hope and posts of great information. I finally found a good kidney cancer forum with a group of cancer warriors from all over the world. I posted question there and someone emailed me right away. He mentioned a name from National Cancer Institute, who is one of the most brilliant minds in kidney cancer research. I emailed the doctor and called his office right away. He emailed me back and said they have a long term interest in this subtype and they are the one identifyed the gene for and described this type of cancer in 1996. He said they have a team working on a treatment approach to this disorder. I will send him everything I have so far.

At the same time, I contacted Dana-Farber. RCC oncologist already discussed Joey's case yesterday at the meeting.

I pray that we can benefit more from these two institutes.

Welcome home

8 days after the surgery, Joey is ready to go home. He lost 4 pounds from 10 days of fast. He is tiny. I joked with him that maybe the tumors (about 20 removed from tummy) and kidney weigh 2lbs. On the way, I asked him who he wants to see most. He said Addie (our dog). And he said what he wants to eat most is icecream.

When we arrived home, Joey got a surprise welcome from his friends from Boyscourts! They decorated the door. I saw a big smile in his face. He read out loud the names of his friends from the Den. He missed them so much.

Joey will have a pet scan next week. I worry about radiation. Pet scan produces strong radiation to children. But we don't have other option. He will start the medication when he recovers. One side effect of that drug is to make the wound crack. So he needs to wait.

Recovery

Day 1

Joey is in great pain and cried for the first time. I had c-section (less than 1 hour surgery) twice before and know how it hurt. It's hard to see him suffer. He sit up, stood a little bit and sat on chair today. We massaged him, especially the bottom and back. He sweat a lot.
Day 2
He moved more today. He could roll over more easily.

Day 3
He walks, stands by himself and can play some games.   He walks out of the room. He had the first bow movement today. Joey is pampered with gifts. Thank you, my friends, for sending in gifts and love!

Day 4

He walked in the hallway by himself. Feeding tube was removed. He sipped liquid. Fat and protein are given through port. Doctors call him superhero. If everything is normal tomorrow, he can be out in 3 days.

We had a long talk with oncologist about treatment plan. Joey needs a pet scan in one week. His tumor spread from kidney to the neck and the images show some small tumors possible in the chest. Before a second surgery, he will start taking pill. 6-8 weeks after taking the pill, he needs another scan to see how his body reacts with pill.
Day 5-7
Joey started regular food and walked to the playroom upstairs. He didn't complain any pain. We are ready to go home. Doctor says he can go to school and wait for 2 more weeks for sports.

Surgery

We flew to Cincinnati two days before the surgery. When the airplane took off, I couldn’t help crying. Cincinnati, will you be my hope?

On the way, I don’t know why I kept thinking about my kids in the culture class. I missed them. Each one of them has their story. When people they trust most give up on them, they didn’t give up. They managed to survive against all odds. They put up a good fight against their destiny. Joey, I want you to have that spirit. Mommy will be with you to fight no matter how long the fight will be. 

On April 15th, almost one month after the tumor was found, Joey had the nephrectomy. Doctor told us it would be 8-12 hours long and the major risk is bleeding. The hard part is not the kidney, but how to separate the tumors from the lymph nodes in abdomen. 

Cincinnati Children’s Hospital ranks 3rd in this country among children’s cancer hospitals. They have strong research in the field of pediatric cancers. Surgeons are familiar with nephrectomy. We pray that Joey will be in good hands. 

We arrived at the surgery zone at 5:30am and Joey was pushed into the operation room at 7:30am. I had thought I was ready to face this. But when I thought of my boy lying alone on the cold operation table, I couldn’t help crying in the waiting area. Oh, how I wish I could get the surgery for him. 

Joey and Dad before the surgery

Every one and half hours, nurse updated us about the situation in the operation room. Joey was doing well. He didn’t cry a tear and he smiled to the nurses and doctor. Five hours passed and the kidney was still not taken out. It was slow because doctor need to figure out the safest way to take out kidney and separate tumors. 

While we were waiting, TV showed the terrifying picture of Boston Marathon blast. Why? There are people in the world fighting for their lives. There are cowards taking away people’s lives. 

Eight hours of anxiety, eight hours of fear and eight hours of prayer…Finally surgeon came out and talk to us. The surgery went well and they were able to take out all the tumors in his tummy. He got two units of blood transfusion. My brave boy, never cried a tear.

Should I tell him?

Every time I had a talk with doctors, they encourage me to tell Joey everything. They said from their experience, all the parents who decided not to tell regretted all their lives because they lose the trust. I really hesitated. Joey is such a positive boy with a “no big deal” attitude about something he can’t have or he loses. There are professional children’s counselors who can help parents tell the kid and explain what the chemo is and how it works. They lend me a doll with a port on it and workbook. They even use Lego to explain how cancer occurs. 

When Joey stayed in Shands, he did notice a poster on the wall saying Kick the Butt of the Cancer. He asked daddy, “Why they put me in this floor? I don’t have cancer, do I?” Luke told him some of the kids in this floor have, but some don’t. “So how about me?” Daddy said no. 

After discussing with Luke, we decided it time to tell him more about his tumor and cancer, probably not everything, but most of it. 

“Joey, you know you have a tumor in the kidney, right?” 

“Yes, I do.”

“Some tumors are fine, but some are cancer.” 

“How about mine? Is it cancer?” 

“We will find out. If it’s cancer, Daddy and mommy will find the best doctor in the country to cure you.” 

“Ok.” 

Then he didn’t want to listen anymore and took off to play. I wanted to talk to him more, but he got impatient. The talk finished. I felt relieved. Then he never brought this up. He doesn’t think he is sick because he showed no symptoms at all.

School

Before the surgery, Joey still went to school and did his afterschool activities. I watched him closely all the time. He can’t run or jump in case the tumor bursts. It’s a pain for him not to run. But he never complained. Sometimes he played swing and built sand castle. Teacher told the kids in the class that he needs a surgery soon and everyone needs to be careful not to touch him. He is the same loud kid in the class. 

Joey plays in the string quartet the night before we leave

Joey is an origami genius. He does origami at home every day, even at school. I saw his origami pinned on whiteboard. I brought the origami paper during the recess, so he won’t run around. Kids came to join him. They wanted Joey to teach them how to do it. It ended up half of the class doing origami with him every day during the recess. 

Joey doesn’t want to miss FCAT. He is a kid that loves to compete. He believes that teacher will give him a FCAT harder than others because he is smart. 

I brought Joey’s lunch to school and ate with him. Although doctor said he can eat pretty much everything, I still gave him strict diet. He can’t eat something that Chinese believe cancer patients aren’t supposed to have, like sugar, deep fried food, etc. 

“Mom, I’m the healthiest kid in the class!” 

“Good to know that.”

“Look at their lunch boxes. They are awful!” 

He meant he ate the healthiest in the class. 

I ached.

Diagnosis

Diagnosis (1)

Joey’s cancer turned out to be very complicated. Shands did the biopsy and about 10 pathologists were involved. But they didn’t see a straight-forward answer. They told me it was not Wilms for sure. They told me before among all the possibilities, Wilms is the best one with better chance to cure. But all others have poor prognosis.

A friend called and she knew a pathologist in Shands. She told us a name called rhabdomyosarcoma. The next day, another doctor came and told us the biopsy indicating it’s more like rhabdoid tumor of the kidney, which is the deadest among the three we heard so far. He said among all the children he treated before, no one made it after one year. 

I completely crashed down and held Luke’s shoulder crying. There is hatred, only hatred in my heart. I just hate everything happening. There is no good news every day. My heart was cut piece by piece every moment when they found out more. One year? This is too cruel! I can’t accept this. My family and friends in China had no idea what happened. How can I face his grandparents and great grandparents in China? 

One week after tumor was found and the day came when doctors were ready to tell us the result and the treatment plan. It is different from all three they mentioned before. It’s called clear cell sarcoma of the kidney, less than 20 cases a year in America. They handed to me the treatment plan: 8 months of aggressive chemo because the cancer was advanced. 

The image of Joey without hairs is in my head. No! I can’t let chemo ruin my boy. Chemo will kill everything in his body, his immunity, his energy, everything. But what else can I do? That’s the only plan doctor offers. I calmly listened to doctor talk about the details of chemo, its side effect of bring a second cancer, diet, etc. I didn’t remember now how I could sit there listening for two hours about how to ruin my boy. 

My Lord, help me! Help me how to be with him through the harsh chemo! Help me how to encourage him to fight! Help me how to make him upbeat to lift up the immunity! Help me! 

Two hours after doctor figured out the diagnosis and told us they were 100% sure about his cancer and treatment plan, nurse told us the doctor wanted to talk to us more. I was scary. What else? What is more coming up? I can’t take it anymore. I’m exhausted.

Diagnosis (2)

Doctor sat down and said the treatment plan got cancelled. We couldn’t believe what we heard. She said another pathologist, who was involved in Joey’s case two days ago, found something suspicious. He thought it a different type of cancer. He sent Joey’s biopsy to Harvard and Cleveland Clinic. Now pathologists there confirmed that it’s a totally different kind of cancer. So they said we need to wait. 

I was scary. Rarest of the rare, this is what they said. What is exactly growing in my boy’s body? God, give them wisdom to tell us an answer. Doctor said they need more time to test because they never saw the pattern before. 

I sat there, still and didn’t know what to say. What a dramatic day! Is this good news or bad news? At least, he doesn’t need chemo right away. At least, he can keep his hair now. But, what’s the answer? 

Doctor sent us home. It’s Easter weekend. Friends came to visit and we took a walk outside. Joey looks perfectly fine from outside. Everything is the same as before. He did his unfinished homework for the whole week, some Chinese reading and practiced violin. I can’t image the deadly tumor spreading in his body. How I wish I could stop the clock here and when we come back he is reading his Oh, the places you’ll go book with all his teachers’ wonderful wishes. Jesus, you arise today. I pray that the strength and grace that bring our Lord out will carry my family through this difficult time. I pray that you give me peace and comfort. I pray for miraculous healing.

Diagnosis (3)

Two weeks after the tumor was found, Shands gave us the final answer. They put a lot of efforts in the diagnosis and sent Joey’s biopsy to other places in the country. Finally, we had the pathology report in front of us. It says it’s either PEcoma or melatonic xp11 translocation renal cancer. These two types are very similar with overlapping features, but not exactly the same. But they don’t think it renal cell carcinoma. The treatment plan is to take a pill a day. Chemo doesn’t respond well with this kind of cancer. If the pill works and tumor shrinks, surgery will be planned. In America, there are less than 10 cases a year. 

I felt a little bit relieved since he only needs to take pills. No chemo. But what if the medication doesn’t work? What if the tumor keeps growing? I looked online crazily everywhere, in English, in Chinese and in Japanese. No luck. I found some reports of this cancer, but no treatment plan. Because it’s so rare, there aren’t enough research and medication needs to be tested yet. 

I’m thinking getting a second opinion. I called many cancer institutes, hoping to find out more. One of them gave me the same answer as Shands. I felt hopeless and clueless. But I don’t believe only Harvard saw this cancer before. There must be someone else. Then I think of one person, Joey’s pediatrician. I called her and thanked her for finding tumor. She has been calling Shands several times to check on Joey. I told her that I’m desperate to look for a second opinion, but don’t know where I should go. Several hours later, she called me back. She found a doctor from Cincinnati Children’s Hospital, who published some paper on this type of cancer. She called him right away and told him about the pathology report. Dr. Geller, who treated this cancer before, was concerned that Joey’s cancer is renal cell carcinoma. I scheduled an appointment with Dr. Geller the next day. 

The next day, Joey, me and Luke flew to Cincinnati to see Dr. Geller. Unfortunately, he is out of town after the appointment for a week. He spent two hours explaining to us why he believes Joey’s cancer is RCC and he suggested surgery, then medication. He asked Shands to send Joey’s slides to Dr. Perlman, who is a pathologist in Chicago where most of renal tumors were sent to. If Dr. Perlman agrees it’s RCC, Joey will have a surgery soon.

A walk in the city of Cincinnati

We flew back to Gainesville the next day. Just as the plane landed in Gainesville, my phone rang. Dr. Geller said Dr. Perlman thinks it xp11.2 translocation renal cell carcinoma. Joey was scheduled the surgery next week. He said Joey needs to stop the pill from Shands for the safety of the surgery. Xp 11.2 translocation RCC was first named in 2004 by WHO. It’s more common in children than adults. But it is very rare in the world. 

Now we face two different diagnosis and treatment plans. Which one should I pick? I prayed, prayed very hard. Lord, give me the wisdom and courage. You know the plan. You are in control. I put everything in your hands.

Support

I am thankful I have wonderful friends supporting me through this tough time. My Chinese friends cooked the meals, brought bakery item and comforted me. Parents of kids in my Chinese culture class gave me great strength. They brought toys, goodies, cards to Joey and their kid to play with Joey while he is in hospital. Some of them who have medical background educated me how to handle the stress. They came to the hospital to be with me while the doctor talked to me. Their constant care and encouragement and spiritual support carried me through. Joey’s friends from Boyscouts came to play Lego with him. His violin teacher loved him so much and she was upset and cried when she thought of Joey. Parents in the same violin group sent him science kit. Joey was spoiled with many new toys. 

Kids in my culture class visit Joey in the hospital

Joey playing thanks

A friend sent me this Bible verse. 

“We are hard pressed on all sides, but we are not crushed; 

Perplexed, but not in despair; 

Persecuted, but not abandoned; 

Struck down, but not destroyed. 

We always carry around in our body the death of Jesus 

So that the life of Jesus may also be revealed in our mortal body.” 

2 Corinthians 4:9-10 

I read it every night before I went to bed and every morning after I woke up. 

My mom is a very strong lady. She helped with cooking, watching baby and comforting me. She is very firm believing this should not be the story of her grandson. Luke is a quiet research guy and he doesn’t have many friends to talk to. So I sent him the emails my friend sent to me. Joey’s cancer definitely put us closer together, every one of us. 

A parent of Joey’s school helped to set up an account for Joey. People lend their hands to help us financially. My dear Chinese friends, far away from us in California, set up an account for Joey under Chinese Mutual Aid International Network, so they can get match from business. They sent me information of medicine of cancer, recipes, therapies, etc. I want to thank all my friends for your help and support and those we never meet before but send us emails and even money. We have a long battle to fight and I know I’m not alone. Cancer doesn’t define Joey, but how he fights cancer defines him. We are doubled bless with your care and love.

More tumors

Life hurts. It keeps hurting us more and more. Joey went through all the tests, blood test, urine test, radiology, MRI, CT scan. They found another tumor in the lymph node in his neck. They took out the tumor from his neck, which is 2cm big and did the biopsy. All these tell me his cancer already spread to faraway place in his body. They called it Stage IV and metastatic. 

Why? I asked God. Please give us mercy! Please don’t give me more than what I can handle. Please stop the tumors spreading in his tiny body. I could do anything for your glory. Please tell me what should I do? If I could switch, please give me all his tumors. If I could switch, I could give him my kidneys. I pray you cure him, you comfort us, you give us the strength. 

Luke, who doesn’t believe in any religion, was reading Bible every night. He is searching for answers. Why terrible things happened to good people? We are hardworking and loving parents. I’m a “green” mom, feeding him organic food as often as I could. I threw all his Halloween candies to the trash can in front of him and I bring him to Mcdonald’s maybe once or twice a year. Why? What might go wrong? During the pregnancy, I didn’t watch TV or use microwave and I ate healthy. I even wore that radiation-resistant apron which is popular in China. Why my Lord, why give me such challenge?

Oh, the places you’ll go

I got this idea from someone online. Buy Dr. Seuss’ book Oh, the places you’ll go and have Joey’s teachers from K-12 sign and leave some notes. On the date of graduation from high school, I will give Joey the book full of the sweet notes from all his teachers before. When I gave the book to his first grade teacher, she exclaimed, “Fabulous idea!” One month later, it became a book that we need to constantly fight for, a book of luxury for the family. 

On March 20th, the darkest day of my life, Joey had a normal physical after his 9th year old birthday. The pediatrician felt his tummy hard and suggested an ultrasound. She called me right away. “They found a mass in Joey’s kidney.” I didn’t know what that meant. A doctor in Shands later talked to me. “He has a tumor in kidney, which is around 12cm big.” My head exploded. I called my husband Luke right away. I told myself to calm down. 

“Mom, what’s a tumor?” Joey asked. 

“A bump in your tummy, honey.” 

“Ok, I don’t feel anything.” 

Joey was admitted to Shands right away. The scariest word for all the moms in the world was in my head all the time. I couldn’t feel my feet. Later, doctor said it’s probably Wilms, which is a type of kidney cancer in children. How can she be so sure it’s malignant tumor? I comforted myself. It could be a benigh one, isn’t it? 

I couldn’t help crying in front of Joey. I am not prepared in such situation. No one teaches me how to be strong.

“Why are you crying, mom?” 

“Because you need a surgery.” 

“I don’t like surgery,” he said. Then he continued watching the cartoon in TV. 

Luke held my hands and said, “It’s probably a mistake.” No, it is not. I told myself. It is a huge tumor. It was there probably for a while. How come I never noticed before? How long did it grow there? Several months? A year? Two years? Nothing else in this world matters to me. Our life is completely changed. Luke stayed in hospital with Joey. I didn’t remember how I drove home that night. I cried out loud in the car because I can’t cry at home when my mom is here taking caring of Joey’s baby brother. House was so quiet without Joey. Darkness in the room. I was scary. I went into Joey’s room. I cried out loud like a baby. No, I can’t. I can’t live in a house without him.

Quick Update

From Kathy - The surgery went well!

Surgery Day

 

 

Please keep Joey and his family in your thoughts today. Today is surgery day and it is expected to last from 8 to 12 hours.

 

Either Kathy or I will update when there is news.

 

I found an old picture (Joey in Grade 1) that I thought I would share. I know we are all looking forward to seeing the energetic, happy little boy we love back home.

Thank you to all the wonderful friends who are contributing to Joey's fund. Joey and his family will leave for Cincinnati tomorrow morning in preparation for his surgery on Monday. As time allows, Kathy may update us on Joey's progress via this blog so you may want to check for updates periodically.

Let's help Joey

I put up this blog so that friends of Joey and his family can easily donate to an account set up to benefit him online. Joey and his family have been dealing with a health issue that is requiring them to travel for treatment. Any donations will be used by the family to offset costs associated with Joey's diagnosis, such as medical costs, travel and accommodations.

Joey's mother has requested that we not discuss his condition with our children. At this point you can simply tell them that he is having surgery. Please respect her wishes!

If you prefer to donate in person, you can go to any Wells Fargo bank and make a deposit in person. Just fill out a deposit slip, from either the drive-thru or the lobby, and fill it out with the following information:

Name: Joey Xu
account # : 5970640040*

*In case you're concerned, we've consulted with Wells Fargo to confirm that it's safe to post this information.