Ben was diagnosed with Liver Cancer (Hepatoblastoma) in November of 2018 at 5.5 months old. Hepatoblastoma is a very rare cancer. It’s a solid tumor that starts in the liver. It usually affects children less than 3 to 4 years of age.
Ben’s family remembers waking-up early on that unforgettable Saturday morning and playing with Ben on their bed. Something about the way his chubby baby belly was protruding, while they were tickling him, looked slightly different than normal. One side of his belly felt harder than the other, almost like a lump under his right rib cage. They decided to take him to the AI DuPont ER to get checked, though they truly thought they would be laughed at for bringing in their smiling baby.
Unfortunately, that trip to the ER was warranted, and this same day Ben was diagnosed with cancer. The tumor was classified as stage 3—it was not metastatic, but the location and large size made it too dangerous for surgical removal.
Ben was started on a tough chemotherapy regimen under the guidance of Dr. Renee Gresh. The hope was that the chemotherapy would shrink the tumor enough to be operable. Despite a long stay at the hospital and some scary trips to the PICU, the chemotherapy was incredibly successful. Thetumor size shrank by half and made it possible for Ben to have lifesaving liver resection surgery by Dr. Stephen Dunn.
The liver is an amazing organ. While the cancer, and half of Ben’s liver, was surgically removed, the healthy remaining liver was able to regenerate completely to a fully functioning healthy liver.
After surgery, Ben‘s treatment consisted of more chemotherapy to destroy any remaining invisible cancer cells. Chemotherapy was tough on Ben, and the Barry family spent nearly one hundred nights in the hospital throughout Ben’s treatment. Ben required many blood and platelet transfusions, and he dealt with a lot of pain—necessitating strong pain medications and nutrition by IV.
Weight loss was a real concern. Ben dropped from being in the 80% weight range for his age at diagnosis to falling completely off the growth charts. The chemotherapy caused painful sores in his mouth and nausea, making it very hard to keep down anything. Despite many setbacks, amazingly Ben continued nursing throughout his treatment!
Now Ben is two—and a healthy, happy and active toddler. He’s a daredevil that loves to climb and jump. Ben loves his sister, singing and playing with balls, trucks, and dinosaurs, and his favorite color is purple (just ask him!).
Ben will continue to be monitored regularly through blood work. The Barry family feels incredibly fortunate for their son’s health despite the frightening diagnosis. They see a brighter future ahead for pediatric oncology—more individualized and less harmful cancer treatments. They especially long for the day when all children with cancer are survivors.
We call her, Remi Warrior Princess! She is strong and resilient. She is usually a happy little girl and loves giggling and making noises. She loves her three doggies, unfortunately two are staying with her grandparents to make things at home a little more relaxed when we actually get to spend time at home. Remi lights up and looks up to her older sister, Natalie.
Remi was diagnosed with hepatoblastoma at 8 mths of age. Mom discovered a lump on Remi’s side and we were referred to the ER by our pediatrician. Before that, she had vomited a couple times and increased her nap times. Those were odd symptoms we noticed leading up to her diagnosis.
We are currently undergoing chemotherapy, Remi is frequently dropping blood counts and requiring hospital stays. In the past 2 months we have been in the hospital more than home.
We are continuously struggling right now. Her dad is stuck working crazy hours to keep her insurance and since mom is not working. Remi has an older sister who is stuck staying at other houses while mom is in the hospital with Remi.
Remi had started out life a fighter and she continues to show her strength as a warrior!
Aiden loves to play run jump laugh be silly very curious and a tiny dare devil.
He was diagnosed with Hepatoblastoma on July 19, 2017. I noticed his tumor at about the age of 6 to 7 months old as he grew the tumor grew but his pediatrician kept telling me it was normal.
Aiden has had chemotherapy for treatment. He lost hearing due to the chemo and uses hearing aides on a daily basis.
I missed a lot of my son’s senior year of high school and Aiden spent so much more time at the hospital than at home. But through it all we are reminded that Aiden is a miracle.
Aubrey is one tough cookie. She is very stoic. She has been a fighter from the beginning which showed in her NICU days. She loves singing and dancing, especially Moana. We listen to the soundtrack all day. She loves bubbles and any kind of crafts, liking painting and drawing. She loves her big brother and playing with her sister.
Aubrey started going to the potty very frequently and had a few nights on bed wetting, which was very usually for her. We took her to the pediatrician thinking that she just had a UTI. Her pediatrician was just doing a routine abdomen examine and felt what he thought was either an enlarged liver or constipation. He sent Aubrey for an abdominal x-ray. The next day he called and said there was some stool there, gave us a regimen to clear the stool, and said to see him back in a week. We took Aubrey back for her follow up appointment in a week and her pediatrician still felt a lump. He looked at me and said “I really think this is her liver.” The next day he scheduled a ultrasound of her liver. He called us the next day with the results and gave us the devastating news that Aubrey had a mass in her liver and we needed to go to the Children’s Hospital.
Aubrey is an ex-26 week preemie that weighted only 1 lb and 10 oz. We found out that there is an association with hepatoblastoma and micropreemies (babies born weighing least than 1000gm.
Aubrey had her tumor resection on May 8th which removed 50% of her liver. Aubrey’s tumor is grade 3 which puts her in the intermittent high risk. 30% of her tumor was made up of small cells which are an aggressive form of hepatoblastoma.
Aubrey started her first round of chemo on May 21st. She has unable to complete the round due to an abscess that formed around her resection area. She had it drained and still has a drain in place. Aubrey will have 6 rounds of chemo over the next 18 weeks.
I’m her mom, Mikeon. I’m a pediatric nurse at Children’s Healthcare of Atlanta where Aubrey is receiving her care and treatment. It is very hard being on the other end of the patient’s bed.
We are a family of 6. Aubrey has an 2 older brothers (Malik -16 and Tyler – 11) and an older sister (Madison – 5). Our family has been split between family that had been gracious to help us during this time because Aubrey has been in the hospital for 31 days.
From the beginning, Aubrey spent 11 weeks in the NICU fighting to stay in this world and she will continue to fight!
Brielle has an amazing smile and is a beautiful girl. She loves her siblings so much!
We were at home on the night of 1/18/18 and she fell down, forward on the ground, within minutes of that she stared losing consciousness. She was taken by ambulance to the hospital. They released her that night believing she just had a concussion form the fall. She did not seem fine to us and all night cried and needed to be held. We brought her back to hospital the following morning. It was then they discovered she had a tumor on her liver and it was bleeding. She was given blood transfusions and rushed to another hospital for surgery to stop the source of bleeding, the following morning her blood work came back which indicated the tumor was Hepatoblastoma cancer.
She went through 6 rounds of chemo. She had the surgery to stop the ruptured tumor from bleeding. Two days after that she had a surgery to place a port and attempted surgery to resect tumor which was unsuccessful because the tumor was too close to portal artery. She then had 3 of her 6 rounds of chemo. Then she had surgery to remove the tumor and her gall bladder. She then finished up 3 more rounds of clean up chemo.
The struggles we face as a family is adjusting back to life after this, it’s not like you just step back in your old life. It’s different now, our world has been shaken. Our fighter is a twin and has an older brother. We spent a lot of time separated as a family. A lot of our time was focused on our fighter which impacted our other children’s needs. We have the worry of relapse hanging over us. During her chemo we didn’t spend much time outside of the house due to her being immune compromised so we didn’t have a lot of family time enjoying life.
