This is my daughter Nataleigh. She is 15 and soon to be a sophomore. During her 6th grade year, she started having abdominal pain. After many appointments and many tests, they found that her gallbladder was not functioning properly. We dealt with several different doctors, and she finally had her gallbladder removed 3 months later. The surgeon said that her gallbladder was twisted. After that she was able to get back to her active life.
In November of 2021 she again began having abdominal pain. Again, many doctors and many tests and no one could give us a straight answer. One morning she was complaining of excruciating pain, and I took her to our local emergency room. They again ran several tests, one being a CT scan. When the results came back, they said there was something on her pancreas, but she needed an MRI to show what it was. I told the doctor, “Ok, let’s do that now.” And his response was, “no, that’s not an emergency, you’ll have to see your regular doctor to get that scheduled”. I was so upset but at least we learned something. Her regular doctor scheduled the MRI ASAP and when the results came back, she said that Nataleigh had a cyst on her pancreas and that she would pray for me. I was devastated!! I took her to a GI doctor in Louisville and his response was that the spot on her pancreas was not causing her pain and he thought she was just overreacting and trying to get attention.
I took Nataleigh to see another doctor, trying to get a second opinion, and she spoke with me about Dr. David Vitale at Cincinnati Children’s Hospital. She contacted him personally and helped to get us into the system to get an appointment with him. We were able to get into to see him in January of 2022. After sending him copies of her test results along with the imaging, he called me to tell me that he had looked at everything and he did see the spot but that it wasn’t a cyst, but it was a non-cancerous tumor. They scheduled for her to come in and he wanted to do a biopsy. When we met with Dr. Vitale, he was unsure as to how this tumor was causing the pain she was feeling but wanted to check every possible issue while they were doing the biopsy.
After the biopsy Dr. Vitale explained that the positioning of the tumor was putting pressure on her pancreatic duct preventing fluid from passing through. The next thing that needed to be done was a Whipple procedure. This would remove the head of her pancreas, thus removing the tumor, and relieving her pain. We decided to move forward with this surgery.
Surgery was scheduled for March 31, 2022. That was the longest nine hours of my life. Her recovery time was 14 days inpatient and then 8 weeks at home. She did great after surgery and was able to return to her favorite activity, soccer.
In November, she started having pain again for a couple days but then felt better. But then two weeks later, she was in pain again – same symptoms. This continued to happen repeatedly every two weeks for three months. Then she took a hard fall at soccer and the pain got worse. Her pain intensified and I took her to the emergency room. Her pain was 7 out of 10 and this was our first time back into the hospital. They diagnosed her with pancreatitis. The only thing that can be done for that is to give fluids and treat the pain, nothing else.
She has been inpatient in the hospital for more than 40 days this year due to pancreatic pain. She had a celiac plexus block to help block her pain so that she could function and hopefully not have to keep going to the hospital. This did help but only lasted for 48 hours. At this point she has been inpatient for at least 40 days due to chronic pain. On June 15th, 2023, she will have a T.P.I.A.T. Total Pancreatectomy with Islet Autotransplantation. I’m nervous, excited, worried, scared and every other emotion possible. We are hopeful that this surgery will help give her some relief from her constant pain.
She is only 15 years old and has been through more than I have in my 48 years. After leaving the hospital we purchased her a puppy, a golden retriever, that she can use as a therapy/service dog. I’m trying to do everything I can to help her get through this. During her 15 years she’s had three surgeries and countless medical tests where she had to have anesthesia, and multiple MRI’s and CT scans. Starting with a broken arm at age 5, gallbladder removal at age 12, and her Whipple procedure at 14.
She’s a great kid and works hard at soccer and her schoolwork. For her first year back in school full-time she had A’s and B’s for all of her classes for the first two trimesters. She loves school.
Nataleigh has been playing soccer since she was 6 years old. She would play through pain and illness because she loves it so much. I would tell her that she didn’t have to play, but that was all she wanted to do. She also started a new hobby this year, deer hunting. She got her first deer this year and is hooked! She is normally a very active kid, but due to the pain she’s been dealing with she hasn’t really been able to do any of the activities that she loves.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.