Upon arrival at the hospital, we were immediately surrounded by doctors. After looking at her scans, they said hers was the largest optic nerve glioma they had seen. It was shaped as a butterfly filling all the empty space in her brain. We were asked questions such as: has she ever stopped breathing, how much does she sleep, how/what does she eat, etc. Apparently, the location of the tumor (right on the pituitary) should have been affecting her heart rate, breathing, ability to eat, etc. The only symptoms we had seen up to that point was the spinning eyes (or nystagmus) and we always thought she was such a good baby sleeping through the night and taking her naps. You see, she was born with this tumor and it had just grown until we finally saw a symptom.
I see God’s hand in our daughter’s diagnosis. Such a large tumor that caused few symptoms. If we had listened to the ophthalmologist, she would not have been diagnosed until she was suffering more debilitating symptoms. Our daughter landed in the PICU of Children’s for two nights where she was stuck and prodded by a multitude of doctors. Being in the PICU meant parent’s could not spend the night. When the nurses told us the news, my husband (a nurse himself) went ballistic. We were not leaving our seven-month old baby alone at night. It took a while, but they finally allowed one of us at a time to stay. On Thursday, one week before Thanksgiving, numerous doctors were in examining our baby. Each doctor told us something different. First, we were having a biopsy, next no - a biopsy would cause more damage, then back to a biopsy. They were planning to take her for mediport placement that afternoon then they decided to wait. Just back and forth until we didn’t know what to think or do. My husband finally called the PICU doctor in and told her to let ALL the other doctors know there was to be a meeting in the room at 4:00 p.m. When four o’clock rolled around, we had a room full of doctors and nurse practitioners. J.D. (my husband), told them they were going to take turns giving us all their information, opinions, and recommendations. Once everyone had their say, it was decided to forgo the biopsy for fear of causing blindness and/or mental deficits. We were to be released the next evening and planned on being back Monday morning for mediport placement and the first chemotherapy treatment. We went from having a perfect little family, a healthy little girl to a baby with brain cancer all in two weeks. The day of diagnosis, November 19, 2003 and the subsequent weeks are forever burned into my memories. I cannot say those were the worst days of my life, because there have been some doozies since, but I can never forget the day we were told “You’re child has cancer.” April 2003, my husband and I excitedly awaited the birth of our first child. Everyone was excited, from grandparents to great aunts. Our little bundle was born perfect, or so we thought.
The day following our baby girl’s birth, her pediatrician informed us she had a heart murmur – 2 actually. However, we were told one should heal on its own and if it didn’t, she would need a small surgery to close the hole (Patent Foramen Ovale). So, while the news at first terrified us, we learned within the first month that the one closed on its own and the other murmur shouldn’t be anything to worry about. All was once again good in our world! Fast forward seven months. I was rocking my baby girl one afternoon when I noticed her tilting her head and what looked like, rolling her eyes at me. I showed my husband (a nurse) who said we’d watch her over the weekend. So, we just joked about her already starting the teenage years and doing the eye roll thing! On Monday, the pediatrician did not find the situation as funny as she scheduled us to see an ophthalmologist and scheduled an MRI. Dummy that I am, had no idea what she was looking for and quite honestly didn’t give the MRI much thought. We saw the ophthalmologist a week later after examining the baby, he assured us she had nystagmus (rolling eyes) and would outgrow it by the time she was two. He promised us he did not see a tumor. What!?!?! I was dumbfounded! As my husband just looked on relieved, I asked (probably screeched) you thought she had a brain tumor and didn’t tell me?!?!? I can look back on the day and laugh, I had no clue what was headed our way. Another week later, we took our baby to the local hospital for the MRI. Since the ophthalmologist had assured us there was no tumor, we tried to cancel the MRI but the pediatrician was adamant about keeping the appointment. Now that I knew what the doctor was looking for, I was scared to death. The day went from bad to worse as the anesthesiologist ended up sticking our seven-month-old baby more than 50 times to get an IV started. By the time we went home, her little ankles were bruised and swollen. A few hours later we received a call from the pediatrician’s office. I knew it was bad as soon as we walked in and the nurse, trying not to cry took us back to a room. As we walked through the office, we noticed people leaving and looking at us strangely. When the doctor came in, she calmly told us our daughter had a brain tumor along her optic nerves and that Children’s Hospital ER was waiting on us to arrive. |
AuthorMy name is Cindy, I am a Christian, wife, and mother to a teen cancer survivor. ArchivesCategories |