Honored Kid

Helena D.

Age 15
Helena D. Kid Photo

Location

Galloway, NJ, US

Diagnosis

Wilms or other kidney tumor

Date of Diagnosis

June 2012

Status

No evidence of disease

Treated At

The Children's Hospital of Philadelphia

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My Story

As of January, 2016, Helena still shows no sign of recurrence.  
Here is her story.
We were so excited about our family’s trip to New Mexico. We had plans to go to the zoo and museums and visit with old friends. It was supposed to be a wonderful trip full of happy memories. It was definitely a trip full of memories, but not the kind you ever think will be a part of your life. Our flight was delayed somewhere in Texas, due to thunderstorms. We didn’t get into Albuquerque until after midnight. We got to our vacation rental and realized that we would have to make another trip out to Walmart for additional bedding. We tumbled into bed sometime after 2 am and slept in the next morning. The next day we went out for lunch at a favorite pizza place. Helena didn’t eat much. We walked around to look at shops and she began to complain that she didn’t feel great. We got back into our rental car and she said the seatbelt was hurting her shoulder. We thought the desert heat was getting to her. We decided to head back to the house to take a break. We pulled into the driveway, hopped out, and she promptly threw up in the driveway. She felt warm, and we worried that she was suffering from heat stroke. We took it easy for the rest of the day. Grandma and Grandpa arrived to stay with us and all walked to Old Town for dinner. Helena fell asleep at the table and Daddy carried her back home. The next morning she still felt bad so I called our insurance and we figured that we would take her to UNM’s urgent care. We spent all day at the urgent care. She was running a fever and felt bad, but they were not sure what might be wrong with her. They did an ultrasound to check for appendicitis, but did not see anything wrong with her appendix. They told us to come back the next day if she still felt bad. Friday, June 15th, we took her back into the urgent care. The doctors asked if they could do a CT scan. We requested an MRI instead. I walked the halls with our younger daughter. I looked at the artwork on the walls and wondered why it was taking so long. A tech came out and told me they were doing extra imaging. I thought to myself that maybe she would have a story to tell about this trip. Maybe she would tell people how she had her appendix out while she was on a trip to New Mexico. That wasn’t quite how it went. We all went upstairs and once the nurses got Helena settled back into bed again, she told us that we needed to speak with one of the doctors and that it was serious. My husband and I went into a room with the doctor and she told us that Helena had a large mass on her right kidney. They suspected that it was something called a Wilm’s Tumor. She would definitely need treatment, but where would like to pursue that treatment? Being told that your seven year old child, who is happily watching Monsters Inc. the next room over has cancer, was like a punch in the gut. Our lives changed completely on that day. So many emotions. But more than that, our need to protect and help our daughter in any way that we could. When you have no choice but to be strong, you find out just how strong you really are. We checked into the hospital that evening. The oncology floor at UNM hospital is full of color and cheer which is appreciated by the children but is a bit surreal for parents. Helena and I played games of Uno, and we told her that we would need to fly back home to NJ to go to another hospital where they would take care of her. She was actually in good spirits. Her father and I were shaky messes. We managed to secure new flights out of Albuquerque and UNM graciously worked everything out and prepared all of our medical records so that we could bring them to Children’s Hospital of Philadelphia. My memories of the flight back to Philadelphia are strong. Standing in the front of the plane while everyone else boards and the attendants figure out where they are going to put us. Daddy and little sister sitting apart from us. The kindness of a stranger who helped us carry a carseat while in the terminal for the connecting flight. Feeding Helena oxycodone to manage her pain. Helena at the airport in Philadelphia happily hopping around while we gathered our luggage and figured out directions to CHOP. Arriving at the CHOP ER and having people already expecting us. Checking into the oncology floor that night and preparing to live out of a vacation suitcase for an undetermined amount of time. The next week included consultations with many doctors. Helena’s surgery on Tuesday morning. The removal of the tumor and her right kidney. The installation of her port. The start of chemotherapy on Friday. The start of outpatient radiation the next week. Confirmation that next week that her tumor was indeed a Wilm’s Tumor, stage 3 due to rupture, favorable histology. We attended at 4th of July picnic right in the middle of her seven radiation treatments. She was just happy to be around kids. At the time, I thought she still looked very much the same. Now, I look at pictures from that day and I can see that she was fighting. She wasn’t well, but she was doing her best to just be regular old Helena. Fast forward. Chemo every Friday for awhile. Hair falling out and bugging her. Shaving her head to keep the hair from falling into everything, especially her food. Blood counts up and down. Fevers that required us to pack up and drive an hour to Philadelphia in the middle of the night. Planning a move to a new house, and ending up in the hospital for an extended stay while good friends helped to make that move happen. Learning how to put a tube down my daughter’s throat so that we could feed her overnight because she had lost so much weight. Figuring out ways to get as many calories into her as possible. Watching her swing in the backyard on sunny days singing songs. Months passing, and then chemo every 3 weeks. Just enough time to start to feel a bit better. Reading about a tragic shooting in Connecticut while my daughter was sitting on a hospital bed waiting to have chemo. Chemo put off due to low counts. Fuzzy hair coming and going. Celebrating little sister’s 2nd birthday. Finally, January 11th, 2013. The date of Helena’s last chemo. Parents of children with cancer know that treatment is never really over. Every three months we head back to CHOP so that Helena can be scanned. So far, every scan has shown no evidence of recurrence. Another year has come and gone, and Helena is a happy 5th grader. She is as goofy as ever. She fights with her sister sometimes. She loves Warrior Cats books and Harry Potter. She cannot pass by stuffed animals without cuddling them. She has scars. But they don’t seem to bother her. They get lighter every day. She is more concerned about playing and having fun than anything else. My little girl is a cancer survivor. I don’t know that she realizes exactly what that means. She looks and acts just like any other little girl. That is what makes me so very thankful for the research and advances in treatment that have made this life possible for her. She would not be alive without the care she received. But it wasn’t easy. It wasn’t fun. At times, it was absolutely terrifying. And we may be joyful today, but what will tomorrow bring? Another cancer at age 23 due to radiation? Scoliosis? Other health conditions? I read the other day about a girl who beat cancer and grew up to become an oncologist. I thought about how strong she must be, but also how sad it is that children still have to go through this because we don’t have any new treatments yet. She will most likely be giving children the same treatments that she received. Our researchers need the funding to make bigger strides in treatment and ultimately find a cure for these diseases. Our children deserve better than what is currently offered. Every single child who develops cancer needs to have the chance to run and play and just be a kid again.

The Childhood Cancer Ripple Effect

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