Monday, August 11, 2014

Epilepsy Families: Isabella's Journey

Family number three, in our series... The goal here is to open the eyes of the public to the challenges that each individual person, AS WELL AS each individual family, faces as they adventure through Epilepsy.

This is Rose... She has Epilepsy, but what she wants to share today is her daughter's story. Isabella is a little girl who inspires ME on a daily basis. To say she is strong seems so unfitting and ridiculous. Isabella is far past strong. She is a real-life hero, and one worthy of all the joy in the world. All this, and she's only four.


Isabella Rose Wood was born on March 28, 2010. Other than swallowed Meconium leading to a short stay in the special care unit, she seemed to be a happy health baby. She met all her milestones, except not sitting up, but nobody thought much of it and neither did we.

Dec 10, 2010 Isabella wasn't feeling well. When we took her temperature we were surprised to see it at 96 degrees. A call to her pediatrician lead to an ER visit. The on call doctor ordered an x-ray to rule out pneumonia, but found no fluid in the lungs. We were sent home with assurances that this can happen in children. Isabella was fine. The next morning, our lives changed forever.  I got a call from the attending doctor at the ER saying to call him back ASAP. The chief radiologist was reviewing the films from the last night when he noticed a shadow behind Isabella's heart. We rushed back to the ER praying it was just an artifact in the film. Isabella was sedated and put into the CAT scan. Once she was finished, we were led to a room to wait for the results. After what seemed to be hours, a team of doctors came into the room. The shadow was a tumor known as Neuroblastoma; a form of childhood cancer. Isabella was immediately admitted to the hospital and we met her oncologist. The rest of the day is a blur of blood tests, scans, and doctor consultations.

Isabella had stage 3 intermediate risk Neuroblastoma. 

The doctor shared the treatment plan. A surgery to remove as much as the tumor as possible followed by at least 4 rounds of chemotherapy. The chemotherapy and possibly radiation were dependent on a genetic test from a biopsy of the tumor. The surgery was scheduled for December 13th for early in the morning. The doctor sat us down to discuss what would happen for the procedure. The surgery should only last 2 hours. He was confident but made sure we understood the risks. We tried to think of what our questions were but the only thing that we could say was to bring our little girl back to us. The morning of the surgery was a very emotional time. We both wanted to be with her as long as possible but when the time came, we had to hand our baby over to the nurse. The tears were flowing as we said our goodbyes, terrified we may be holding her for the last time. It is impossible to put into words the fear that we felt in our hearts as we paced the halls, waiting. Finally, the doctor walked around the corner to tell us the good news. Isabella made it through the surgery just fine. He was able to remove approximately 70% of the tumor and inserted a central line, a Hickman catheter. We were transferred to the pediatric intensive care unit. The poor baby was in pain and we wanted to stay by her side constantly. 9 days later we were released from the hospital with the first round of chemotherapy the next day as an outpatient in the Oncologist’s office. We did five hours of intense chemotherapy for three days a week. Then on Christmas morning we were admitted back to the hospital for a virus that she couldn't fight off because she had no immune system due to the chemotherapy.

Finally we got back the results of the genetic test that was sent to St Jude hospital. They informed us that she had stage three intermediate risk Neuroblastoma Mync non amplified, which is the best possible outcome and she had to have only four rounds of the intense chemotherapy. Once we did three rounds of chemotherapy, we found out that a move to Orlando, Florida would soon be happening. So on February 28, 2011 we moved down to Florida and did our last round of chemotherapy that ended on March 12, 2011.    After we were done with the chemotherapy, we had two more stays at the hospital that were each two weeks long. One was for another virus and the other was for infection in her lungs. After this we were told we were officially in remission!

On Nov 5, 2012 Isabella had her first seizure while we were in Omaha, NE for a funeral. I didn't realize it was a seizure until the doctor at the hospital told me so. Isabella was having an absence seizure at that time. My first thoughts weren't that she had Epilepsy. I have it, myself, and I didn’t think she had it like I have it, but more of Oh, God, no the cancer is back… since seizures are a sign of brain cancer.

Luckily, no tumors were found in her brain. When we got back home we saw a pediatric neurologist who said it could be a fluke thing or it could be Epilepsy. A couple months later she had another seizure which confirmed she had Epilepsy. Yet another challenge for her to face. Then a few more months after that we found out she was deathly allergic to Lamictal, one of many AEDs prescribed for Epilepsy patients.

Isabella has had many EEGs to monitor her brain waves for seizure activity. Her seizures have changed some and her medications have also changed. Each time she has a seizure, it is heart wrenching to watch her face another challenge. Isabella is now at a good place with her Epilepsy and her life seems to be turning for the better.
For the rest of her life she will see many specialists for her health problems and possibly face many side effects from the chemotherapy drugs. She will be at higher risk for tooth decay and other forms of cancers. She may never be able to have children. I never imagined in my life that I would be a mother to a little girl who has faced cancer along with Epilepsy. Her ability to find happiness in the worst times amazes me every day. 

Isabella is my hero and the bravest little girl I know.


1 comment:

  1. Isabella is beautiful! She is a brave little girl. The cancer and the epilepsy make you a brave momma, Rose. You're courageous and filled with love for your sweet little girl.