Headaches reveal brain cancer diagnoses
I never imagined my 13-year-old daughter’s headaches would lead to a brain cancer diagnosis. My daughter started suffering from headaches with increasing intensity over a three and a half week period. During that time, I sought advice from a friend in the medical field, my daughter was examined by her Texas Children’s pediatrician and a Texas Children’s neurologist, and she was treated with an all-day outpatient IV medication at Texas Children’s West Campus in an attempt to break the headache cycle. Yet, the headaches continued and she was admitted to Texas Children’s Hospital for MRIs. While I was intent on relieving my daughter’s pain and getting to the root of the problem, never once did it cross my mind she was seriously ill. Just weeks before, my daughter was the picture of perfect health – doing well in 8th grade, playing sports, attending camp and vacationing with family.
And so it was as I waited that Friday afternoon for my daughter to complete the MRIs, I was approached by three doctors who sat me in a room to inform me “your daughter has a brain tumor.” They must have said more, but that is all I remember. And then, the MRI technician brought my daughter out. I knew my face could not conceal what I had just learned moments before and so I walked behind as an attendant wheeled her back to the hospital room. It was on that walk that my husband was able to meet us from work. I typed “she has a brain tumor” on my phone and handed it to him as we walked on.
Several hours later, my husband and I met with a team of doctors, one of whom would introduce himself as a neurosurgeon. He would inform us the tumor should be removed immediately. I wonder now what my husband and I talked about with my daughter in those interim hours between learning of the tumor and this meeting and what my daughter must have felt when her father and I left her all alone in that hospital room to learn about next steps. At age 13, our daughter was old enough and mature enough to understand more than a much younger child and to surely have questions of her own and be searching for answers herself.
Everything was happening so fast and, at the same time, we were confined to the hospital room to wait. While in the hospital room with my daughter, my husband spent the weekend researching the team to ensure it was the best we could find. We were blessed to have friends whose children had been treated at Texas Children’s and who now spoke to us of the excellent care they had and were receiving and confirmed for us that Texas Children’s was indeed the right place for our daughter to receive care. Even so, as surgery approached, we had so many unanswered questions. We had only met the neurosurgeon assigned to perform my daughter’s brain surgery on Friday afternoon.. So it was on Sunday that my husband contacted the surgeon with our concerns and he offered to meet with us again in person that evening to answer our questions and assure us that he was the neurosurgeon with whom we should entrust our daughter. That extra care and attention was so crucial at that difficult time. The surgery went well– the neurosurgery team was able to resect all of the tumor! We were grateful and much relieved!
On Wednesday, the neuro-oncologist, Dr. Murali Chintagumpala, came to our daughter’s room and told us that while the tumor had been removed and there was no evidence of metastasis in the spinal fluid, the tumor was cancerous and it was important that our daughter undergo radiation and chemotherapy to target any unknown remaining cancer cells to prevent recurrence. Texas Children’s standard treatment protocol for this would start several weeks after recovery from surgery and would be physically grueling and include harvesting her own stem cells, six weeks of daily radiation to the brain and spine, and four rounds of high dose chemotherapy with stem cell rescue after each round over the course of four months. Proton radiation therapy was recommended as it is thought to be less damaging to surrounding organs and tissue. The hope was in eight months’ time, my daughter’s treatment would be completed. Because my daughter’s immune system would be compromised, she would not be able to attend school her 8th grade year.
So it would be - one step at a time. While we were provided the treatment plan, we didn’t fully comprehend what it entailed. But, with each step, the amazing doctors, physician’s assistants, nurses, Child Life specialists, and other staff at Texas Children’s were there to help and encourage us along the journey. Texas Children’s has some of the finest medical staff in the world, but the fact that Texas Children’s is focused on the care of children is an important distinction that cannot be diminished. Texas Children’s cared for my daughter during her diagnosis and treatment, and Dr. Chintagumpala of Texas Children’s Cancer Center and a host of specialty doctors in the Clinical Care Tower will continue to care for my daughter for years to come to help her cope with the side effects from this intense treatment. The fact that all these doctors are housed together and confer with each other on a day-to-day basis truly does make a difference in patient care!
Our daughter has been cancer free since her diagnosis over three years ago! We feel very fortunate to live in Houston and to have an excellent pediatrician, Dr. Richard Thaller of Texas Children’s Pediatrics, who led our daughter to being treated by a world class team. We will always remember all the doctors and physician’s assistants who patiently answered all of our many questions along the way. Every person we have met has had a love-filled heart and a kind, positive disposition. The individuals that work at Texas Children’s are there because they want to treat and work with children and their families, and that is abundantly apparent. One such person was a particularly amazing nurse on the West Tower 8th floor, Frenae, whose compassion for my daughter made the high dose chemotherapy treatments tolerable because of her commitment to my daughter to managing her nausea and pain and her doing an incredible job administering anti-nausea medications on a strict schedule in coordination with the chemotherapy drugs so as to keep my daughter’s nausea in check. Her compassion compelled her to stop in her busy schedule and look by daughter directly in the eye and tell her with genuine conviction “you can do this – you are strong”. When I witnessed this powerful act of kindness, I knew I would be strong for my daughter and do whatever I could to help her “do this” chemotherapy.
Amazing things are happening at Texas Children’s Cancer Center! We have benefitted from the doctors, research, patients and families that have enrolled in studies and benefactors that came before us, and we want to build on this strong foundation. With gratitude and knowing there will always be much work to be done, I have chosen to become involved with the SALE, a unique, two-day shopping event featuring 50 of Houston’s premier boutiques all at one location with dramatically discounted merchandise with all proceeds benefitting pediatric cancer research. Our third annual event, the SALE 2017, is benefitting Texas Children’s Cancer Center and will be held January 7-8, 2017 at Bayou City Event Center. General admission Saturday is from 12-5 p.m. and Sunday 12 -4 p.m. For more information and to purchase tickets, visit our website, thesalehouston.com. You will be making your contribution to pediatric cancer research and ensuring children battling cancer have the best care possible. Thank you for your support!