My 5 Year Old has Stage 4 Cancer

AmynBri said:

Wilms stage IV
Mommy_of_Aiden,

My 9 year old daughter, Brianna, was diagnosed with stage IV Wilms last month (Jan. 2012). Like your situation, thusfar her biggest battle has been the metastasization in her lungs. I have been looking for someone with a case similar to my daughter's.

Yesterday marked Bri's 5th week of chemo. They plan on taking out her right kidney and the largest tumor in her right lung, but are waiting for the chemo to shrink them down to a size that is safer to remove. I am very scared about the treatment and would LOVE to hear from you. What kind of treatment was your son on? What meds did he take? What happened? Do you have any advice? Did the wilms in his lungs have nodules and did how did it affect his lungs? For some reason, the wilms in Bri's lungs not only spread throughout like it normally does but grew a large mass in and on her right lung as well. I have not found any stories like that yet.

How did they find the cancer in his spine? I have read that wilms can metastasize to nearly all soft tissue including the brain, spine, and bone marrow. Bri's has spread to her lungs, lymph nodes (including ones around her heart and in her neck), and liver. After what research I have done, I asked her doc if they are going to scan other areas of her body to see if those are affected. It seems like they've found it in where they've scanned. The doc said they don't just scan areas looking for stuff and they would not scan other areas unless they had reason to believe it has spread to those places as well...i.e. if she starts having seizures they will scan her brain (etc.) I understand, but I want to know where all it is. I don't see why there is a need to wait until it is so bad she has symptoms from it.

She barely had symptoms of this before it was found! I took her to the doctor because she had started experiencing dramatic weight loss and had become extremely lethargic. Other than that she had complained for a couple of days of side pain. What caused you to find the Wilms in your son? Did he have symptoms before it was found? Did he undergo full lung radiation, proton therapy, or a combination of the two?

How long did they wait to do your son's nephrectomy (assuming he had one)? Did you have to wait for it to shrink? Other than the symptoms I'd mentioned, Bri was perfectly fine before it was found. After it was discovered, she was hospitalized for approx. a month and had her central line put in and a biopsy done the first day. After this surgery, her health seemed to plummet. Since then she has not been the same child. She is very shaky all the time and her voice sounds weak and quivers. It almost sounds like she is always crying but she insists she is fine. She seems like a little old lady trapped in the emaciated body of a 9 year old girl.

I just have so many questions for you. I would absolutely love to hear from you. I would really like to get into contact with someone whose child has been treated for (specifically) stage 4 wilms relatively recently (will prob have a similar treatment). Bri starts a trial regimen in 2 weeks that I am having anxiety over. If you would contact me I would be absolutely ecstatic.

Thank you,

~Amy

I am so sorry for your little boy and you.  My grandson was just diagnosed with Wilms tumor.  They had to remove the whole kidney.  They have  also found it in his lungs and lymph glands that were near the kidney.  Yesterday he started Chemo and will eventually start radiation.  I do know from talking to the Drs at Boston Childrens Hospital that the prognosis is good.  I do not understand a lot of it and am learning as we go along.  He is 2 years old.  I am here for you!!!