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.
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.
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.