April 22, 1997 is a day I'll never forget. That was the day my 4-year-old daughter, Staci, was diagnosed with a granulosa cell tumor – ovarian cancer. During her three hour surgery, they removed a tumor the size of a Nerf football from her abdomen along with her fallopian tube. The surgeon came to the waiting room with good news and bad news. The good news was that she still had one ovary so she still may be able to have babies. The bad news was that the tumor was malignant and had burst before they were able to get it out. For convenience, they inserted a central line, which stuck out of her chest. It was alarming and the tears started to flow an hour later when I made that first physical contact with her.
Diagnosis and treatment didn't come right away because of her age and the rarity of this kind of cancer in a young girl. My personality and drive to take care of business were far too impatient for the waiting game of diagnosis and treatment. What if it spreads during the week it takes to figure it out?
Staci began her first round of chemotherapy on my 35th birthday. The first injection was terrifying to watch, especially since the fun and friendly nurse that had been our caretaker for the past week came fully dressed in garb designed for a nuclear plant. Staci's inpatient treatment was three bags a day (Ifosomide, Cisplatin, Etoposide) for a total of five days. This was her treatment plan every 21 days. We brought her home on day six, with a home nurse to come in and take her blood to make sure she didn't fall prey to being neutropenic (low white blood count). We wore face masks and anti-septic/germ killer everything. No one could come to our house during those first three days of her being home.
As a parent/caretaker, you want to fight with every ounce of fight that you have. It's normal and necessary to help you feel like you are fighting right along with your precious baby. You find, though, that you come to a routine of sorts. The treatments are scheduled, the neutropenia stage passes, and aside from the weekly visits to the doctor’s office, you can breathe a little in anticipation of the next "round," every 21 days later.
July, 1997 - Round 4 – Staci was getting weaker with each round of chemotherapy, meaning it was harder each time for her to fight off the side effects that came more quickly than the first three rounds. However, always follow your heart with what you feel is right. She was throwing up, but it did not look normal. She turned green, not pale. She couldn't even hold a sip of water down. Even though we trusted her doctors, I mentioned to them that things didn’t look just right. The doctors said, "It will take a toll on her with each dose," to which I replied, "I know, but this just feels different." Insistent that she be evaluated more closely, another complication was found in her stomach. Talk about a blow… just when we thought we were getting along and things were routinely managed, there was another growth, or so we thought.
Since there was an urgency to perform surgery right away, they began a 3-hour whirlwind of blood transfusions, doctor after doctor coming in the room, family being called, etc. After the surgery, we found out there was no tumor; she had adhesions from her first surgery that had wrapped around her small intestines and closed off passage. They cut 10 inches of her intestines out and sewed them together. She was very weak and was slow to come to. That slow period resulted in 20 days of being in a semi-coma- no response at all. However, her body was functioning and I constantly wondered, "Will her body fight and build itself back up?" Only time could tell.
I will tell you, I never thought of death. Those 20 days just became a routine for us as well. Family took shifts and we settled into a manageable system, almost robot style. My mom was there the day she came to. Mom was getting ready to leave the room for a quick break when Staci, in a small meek voice said, "Grammy, don't go." Doctors, nurses, other parents, came flooding into the room to witness an unbelievable day. We were told later that she was given a 20% chance of survival from that surgery.
Staci had her central line removed in November, 1997. This was a celebration of sorts, as we came to the end of the routine treatments that were part of our child's life for many months. We entered another phase because now she was not under constant care, just managed care. The central line was truly a blessing, as it avoided the vein collapses and skin bruising from frequent needle probing. However, there is a lot of responsibility that comes with keeping the "line" free from infection by keeping the area around it clean and sterilized at all times. Remember, that is yet another surgery if they have to re-insert another line. As parents, you find it hard to break that constant need to protect your child. With each sneeze or cough or fall, you just know that is the result of another tumor growing inside.
Staci is now 18 and soon will be graduating from high school. She tells her story to all and has a sense of pride about herself when she does. We have served on many Relay for Life events, cancer drives, blood drives, etc. She hopes to one day become an oncologist nurse to give back.
You will learn how to balance your personal life, your professional life, and your spiritual life. My first born, Jimmy, the apple of my eye, still needed his mommy and daddy. The hospital is very accommodating in these types of situations. Don't be afraid to ask for another cot for the patients' room so the sibling can spend the night. Jimmy knew that every third Friday he would be spending the night at the hospital with mommy and Staci and we would order pizza and bring the TV with video game hookups to it. Take advantage of the offers to help, tap into all the resources offered by the hospital, doctors, nurses, take a nap in the middle of the day, or go on a date with your spouse for one night. I did not do those things as much as I should have, but on the rare occasions that I did, I always came back with a stronger zest for fighting and a clearer view of things. This unfortunate path that has been given to you is not easy – actually, it's probably one of the hardest things you will ever have to do as a parent, but never lose sight of HOPE.
Staci's mom, Debbie