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.

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.

Thank you all, my dear friends!

A wonderful friend of mine, a talented photographer, came to my house to take some pictures of Joey. He put Joey's pictures on Flickr to spread the words. (Thank you, Garth! You are the best!) I put one of them on top of the blog. Here is another one. Joey looks like holding a sword and the shadow behind is my family. These pictures give me strength, comfort and love. 

In the very dark days of my life, I have tremendous support from friends and people I never met. Every day, my email box is full of greetings from far, encouragement, recipes, Bible verses, prayers, advice on financial situation...All these helps me become a "caregiver survivor". Sometimes when I feel so overwhelmed with new responsibilites, I put down my head in the elbow, close my eyes, wtih a deep breath, think of my friends and move on.

One day, I asked Joey how we can possibly thank all these people who help us. To a lot of people, I don't even know an address to mail thank you card. Joey said he would draw a picture to show appreciation. Joey complains about learning Chinese and doesn't enjoy reading a book in Chinese, but he is always fascinated by Chinese culture. So he decided to draw a Chinese imperial dragon. I told him this is the strongest dragon I can ever imagine.

 Thank you, my friends. My boy will be as strong as a dragon and I will be as strong as him.

Rollercoaster

Life is like a rollercoaster. One moment I feel my spirit lifted when I read the Bible or miracle stories of cancer survivors. The other moment I am completely crushed in tears. I feel swallowed by the waves of fear. When I am on tip of the wave, I am losing my boy. I extend my hands to try to catch him, but he is away little by little from me. When I am on the bottom of the wave, I am anxious about the coming of next wave. Lord, tell me, what can I do to step out of this endless fear? I can't let this ruin my life.

The wave of fear swallowed me again when we got the result of Joey's petscan. It is not a big surprise for us thinking about the way tumors spread from kidney to neck. Pet scan shows more tumors in lymph nodes in para aorta, chest and neck. The biggest one is 2.7cm.
I have the picture in my head of those deadly tumors all over his tiny body. They are ugly, pervasive, attacking, but I tell myself they are not undefeatable. Joey has great personality to fight these tumors. He needs me as strong as him, as positive as him and as fearless as him.

Often at the end of the day, I feel so exhausted, I read the quote again and again sent by a Chinese friend:

我们不能保证好人都能有好报，也不能保证坏人都能受到惩罚，但是，不要把目光盯在公平两个字上，就算老天是不公的，也要在不公的老天下面健康地活着。让老 天尽管来为难好人，它最好也能为难到底，最好为难得他们走投无路，使他们不得不从肋下生出羽翼来，不得不学会飞，直到无论什么样的险山恶水都再也无法阻挡 他们的去路.

We can't promise that all the good people can have a good life or evil people get punished. Please don't fix your eyes on fairness. Even there is no fairness in the world, please live a healthy life in this unfair world. Let me welcome all the odds with a fearless spirit. I wish all these odds can be as persistent as me, so I would be driven into a corner, with wings coming out of my arms. So I have to learn how to fly. I would fly with my fearlessness. Then there will be no obstale in my way!

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.