Hi! This site is about our daughter Helena and her fight against renal cancer. She was diagnosed in June 2012 with a stage 3, Wilms tumor when she was 7 years old. Treated at Children's Hospital of Philadelphia, she is now 12 years old, thriving, and her most recent scans show no evidence of disease.
Our daughter, Helena, was seven years old when we found out she had cancer. We never suspected that she was sick. There were no clues until the month preceding her diagnosis. She was involved in dance, and was always bouncing and running around. She's been a bouncy little thing her whole life. In May of 2012, she began to complain every so often that her side hurt, but when we would ask her the next day if it still hurt, she would say that she felt fine. It wasn't until we were on a long distance vacation that she finally showed the symptoms that made us take her in for evaluation.
We arrived in Albuquerque, NM, late on a Tuesday in June. On Wednesday we ate lunch at a restaurant and walked around to visit some shops. Helena said she didn't feel well. She kept complaining that she was too hot, but we thought that was because we were in the desert in the summer. When we got back in the car to drive to our vacation rental, she complained that her shoulder hurt a lot and that her side hurt again. When got back to the house, she threw up outside the car. That made us think she either had heat exhaustion or this was appendicitis, so we let her rest for the afternoon and watched her carefully. We tried to go out for dinner, but she fell asleep at the table and my husband had to carry her home. The next morning she did not feel any better, so we took her to the urgent care at UNM hospital. We were there most of the day. The doctors did bloodwork, x-rays, and an ultrasound and tried to rule out appendicitis. She was running a fever and was in pain, but nothing was coming up as a definitive answer. They told us to come back in the morning if she still didn't feel well. We came back the next morning. They then wanted to do a CT scan, but we were worried about the radiation and asked if they could do an MRI instead. We were actually lucky they did the MRI. One of the techs noticed something and did extra imaging. When we got back to the clinic, one of the doctors told my husband and I that we needed to speak to another doctor and that it was serious. We went into a room and were told that our daughter had a large mass on her right kidney, and that we would need to make arrangements for her treatment.
Being from out of town, we were admitted to the oncology floor of UNM hospital while we were making the decision to fly back to Philadelphia to CHOP for surgery. We flew back on a Sunday and went immediately to the ER at CHOP. They already knew about our case and admitted us to the oncology floor right away.
On Monday we met with many doctors, who said that they suspected that the tumor was a Wilm's tumor but they would not know for sure until it was removed and sent to pathology. Helena was scheduled for surgery first thing on Wednesday morning. Her surgery went well. The surgeon removed the tumor (approximately 9cm x 13cm x 7cm), her right kidney, and shaved a thin portion off of her liver and diaphragm. He installed a port that we would use for her chemotherapy. The bad news...the tumor had already ruptured. There were cancer cells floating in her abdomen. The better news...her lungs appeared to be clear. No apparent metastasis to any other parts of her body.
After the surgery, we were transferred to the surgical floor. And there we waited impatiently for days to find out what pathology would tell us. Finally, after the weekend we got confirmation that it was indeed a Wilms tumor, stage 3 due to the spillage. Game plan: radiation and chemo based on the guidelines set forth by the Children's Oncology Group. Treatment was okay to do outpatient so we left the hospital and came home that Tuesday.
---Helena underwent 7 radiation treatments and 8 months of chemotherapy. She finished treatment in January of 2013, had her port removed in February. As of January 2018, she remains cancer free. We've been moved to the SURVIVORSHIP CLINIC!
Today, we heard the words that we have been waiting 4 years to hear. Dr. Fox came into the room, and after the regular pleasantries she said, "Helena, you are CURED of Wilms Tumor. You don't need to see me anymore."
No more ultrasounds. No more x-rays. No more blood draws (which were a little harder today for some reason -- I guess it had been awhile).
We will make an appointment after school is out this year to visit the survivorship clinic at CHOP. They will follow her progress yearly and make any arrangements with specialists for her continued care.