In October of 1994, Treva Sellers, our church pianist and Judith Ralston, Brittany's kindergarten teacher noticed Brittany's left eye had slightly turned in. We made an appointment with Professional Eye Associates in Calhoun for an eye exam. The diagnosis was symptoms of lazy eye. Brittany had to wear a patch over her right eye so her left eye could strengthen. I didn't think much about it, because I had to wear a patch over one of my eyes when I was 5, because of lazy eye. We did everything the doctor told us to do, but her eye turned in more.
One night in early June, we noticed that her eye would not move. We made an appointment for June 14,1995 with Dr. Timothy O'Boyle, an eye surgeon with P.E.A. in Dalton. Brittany's eyes were re-tested. Dr. O'Boyle ordered a MRI for the morning of June 15, 1995 to check the nerves and muscles leading to and from her eye. Then we were scheduled to see Dr. O'Boyle on June 23, for the results.
On the evening of June 15, at 5:05 as we were preparing for Brittany's t-ball game, the phone rang, my husband, Don answered the phone. I could tell by the look on his face that something awful had happened. After he hung up the phone, he said that we had to get Brandi (then 13) and Brittany (then 6) across the street to our friend's house to stay for awhile. As tears poured down his face, he told me the call had been from Dr. William Barnwell, (of P.E.A. in Dalton) he said "Your daughter has a brain tumor. We've already put in a call to Emory Hospital. You should hear something from them tomorrow."
Nothing could have prepared us for this terrible news. This just couldn't be happening to us! Our hearts broke into a million pieces. Uncontrollable tears, then the numbness takes over your body and you feel like a part of you died. Then I had to call my parents and Don had to call his. Can you imagine having to tell grandparents (that think that their grandchildren hung the moon) that one of their babies has a brain tumor? How do you tell you're six year old? What do you tell her? We decided to wait until we met with the doctor from Emory before we said anything to Brittany.
At the t-ball game later that evening, we all sat watching Brittany trying to line up the ball on the tee.(by this time she was seeing double because her eye had turned in so much.) But, as usual she was determined and she had such a good time playing. We watched her play through a blur of tears. Each of us trying to cope with our own grief and yet, trying to comfort each other. Only God and His comforting love got each of us through that night.
Friday, June 16, Emory Hospital called; we were scheduled for an appointment on Monday, June 19 at 11:45 with Dr. Joseph Petronio, a Pediatric Neurosurgeon. I begged for them to let us come in right then, or send us somewhere that would see us that day. Anywhere, it did not matter. They told me that Dr. Petronio was one of the best and that we would have to wait until Monday. What a long and sad Father's Day weekend. On Monday, we went to Emory Clinic (both sets of grandparents included, but not Brandi, she just could not deal with it). We met with Dr. Petronio and he viewed the MRI's and showed us that her tumor is on her brainstem and about the size of her eye socket. A biopsy would have to be done to see if it was cancerous. Her surgery was scheduled for July 12. Our family, friends and church family encircled us with their prayers and their love. God gave us the strength and faith to get us through the following days.
On June 27, Dr. Petronio's office called and changed her surgery date to July 3. The morning of the surgery we have to take Brittany to have electrodes placed all over her head. Before surgery they give her a kiddy cocktail to help relax her. We all tell her that we love her and we will be waiting for her. Prep time for the surgery is 3-4 hours. Then they call out to tell us that they are ready to begin. Brittany was in surgery for eight hours and they managed to remove 90% of the cancerous tumor. Dr. Petronio said that during the biopsy the tumor just kept coming out, but, that he was afraid to remove all of it. The tumor is made up of (I think he called them) astros, they are in your brain, but, for some reason they formed into a mass in Brittany's brain. Brittany stayed in Egleston Children's Hospital for eight days. When we turned onto the street where we lived, the whole neighborhood was decorated with yellow ribbons. What a wonderful site and how much love we felt. It was so good to be home.
We met with Dr. Ian Crocker, her oncologist / radiologist and on July 20, she started with the first of her thirty radiation treatments. The technicians were great with Brittany and us. Brittany had a cast made to fit her head, so that they would know exactly where to put the radiation. The radiation is going through her pituitary gland and that effects her growth. On August 3, she started losing some of her beautiful brown hair. Seeing your baby's hair fall out into your hands is something you cannot prepare yourself for. Brittany's faith in God and His love got her through this awful time. I was so thankful that she wanted to have her hair cut earlier the year before. Her hair was so long that she could sit on it, but she had it cut just under her ears. I saved her pony tail because her hair was so long and beautiful. Due to the radiation and where the tumor is, her hair on the sides of her head around her ears did not grow back in. During this time, Brittany was put on a steroid to keep the swelling down in her brain. She would eat a can of ravioli every hour. Sometimes she would eat so much that she would get sick at her stomach, but she would beg for more. That was one of the hardest times for me. I would cook our meals and in between is when she would eat ravioli.
I have a friend, whose son had a brain tumor. And she told me that I would experience all different kinds of emotions, from rage to self pity. I could not understand what she meant until one night. It was about 2:30 in the morning and I was holding Brittany in my arms on the couch. I had turned the lights off so that Brittany could get a little sleep. All of a sudden this uncontrollable rage filled me. I was so angry; I knew that the devil was trying to take away my very being. I felt that he was trying to take away my child and cause me to question God. All of a sudden, I was fighting mad, I told the devil that he was not going to win this battle, that he was up against a mother that would not back down, I had God on my side and that he had better just keep away from us. I know that if someone had heard me talking they would have thought that I was crazy. I was so furious. After I told him that he was not going to win this battle, something like a black shadow crossed in front of my face from the left and moved away from me. I was so mad that I felt that I could tear him to shreds. From the very start we always tried to explain everything to Brittany, in ways that she could maybe understand. She knew we would always be there for her and that we had put her into God's hands. We prayed and taught her to pray for healing and ask God to give her strength to fight this disease.
I can't imagine how someone that does not have the good Lord in their life gets through everyday struggles much less a life threatening sickness. That's not to say that I walk with my lord every step, I've failed him many times. But do you know that even though I'm the one that walks away, he's always there waiting for me. When I finally decide that I can't do anything without him, he's always there.
We have to go to the hospital every 3 months for Brain Tumor Clinic. Brain Tumor Clinic is where you have a MRI or a CT scan and blood work done early that morning. Then you have an appointment usually after lunch to meet with the neurosurgeon, radiologist, oncologist, endocrinologist, neurologist and they examine Brittany and go over their reports. Sometimes she has to have a bone scan, which is an x-ray of her hand, just to make sure that she still has time to grow, and a pelvic ultra sound just to make sure that her ovaries are ok. She has trouble swallowing, sometimes she gets choked when she eats or drinks. They have a swallow test done. It's like a live x-ray. They give her something to drink and you can see her swallowing. They didn't find anything wrong. The radiation caused her to lose some of her hearing, but most of all it, her IQ dropped. In kindergarten she was above average in reading, but now she is in some special education classes. The radiation affected her memory and learning abilities. She does get tired a lot easier. But the doctors say to let her do anything that she feels like doing. Her eye is turned in a lot more. She is very self conscious of it. We are just glad that she is alive. She is such a strong little girl. I don't know if I could have made it through what she has. I just want to wrap her up in my arms and keep her there. I'm very overly protective of her. I'm so afraid that she will fall and hit her head. Kids will be kids and that's something that I will have to deal with. A lot easier said than done.
Dr. Petronio wants us to see Dr. Arlene Drack, a pediatric ophthalmologist at the Emory Clinic. Dr. Drack is very nice and spends a lot of time explaining everything in terms that we can understand. She explains that she will do the procedure at Egleston in the O.R. Will I have to go thru the doors? Brittany asks. She knows that there is a line just before you get to the doors that we have to stay behind. That's where we have to say "I Love You and I'll be waiting for you". Those doors, those doors, I just wish there was some way that we could go with her thru those doors, just until she was asleep. Dr Drack explains that she will cut the muscles that are supposed to hold Brittany's eye straight. She tells us that she will split the muscles on the top and bottom of her eye, then she will pull half of the muscle and tie it off on the left side, this will pull her eye back out straight. The nerves and muscles that usually do this were damaged by the tumor. She said that Brittany will have stitches that will have to be taken out in about two weeks. She says the surgery will take about four hours, and that Brittany should take it easy for a couple of days. She sends us down to have photographs taken of Brittany's eyes. They take so many pictures, different angles. Before the surgery we have to go to pre-op. Pre-op is where she has to be weighed, blood work done, blood pressure checked, temperature taken and a lot of paper work. Now we are ready for the surgery.
On December 5, 1995, Dr. Arlene Drack (her Pediatric Ophthalmologist at Emory Clinic) performed eye surgery, at Egleston to straighten out her eye, but by early January her eye had turned in slightly. Dr. Drack told us about another procedure that could be done, but, that she could not do it unless Brittany was put to sleep. She said that one of her associates, Dr. Scott Lambert, could do it with Brittany awake. We talked it over with Brittany and she decided to let Dr. Lambert do it. Dr. Lambert brought in this big stainless steel syringe and injected (Botox) a muscle relaxant directly into her eye. Watching as he injected a long needle directly into her eye was just about more than I could take. Brittany was awake with only numbing drops placed into her eye. During this procedure she had to stay perfectly still. Within a few days her eye had straightened.
In June of 1996, after another MRI, Dr. Petronio told us that two cysts had grown from the tumor. By September, one of the cysts had turned into a solid mass, thus forming another tumor. The tumors are made up of a matter (astros, I think, is what they are called) that are in your brain, but for some reason they formed into a cancerous tumor named an Astrocytoma. The cyst contains a protein that has cancer cells. Another surgery was scheduled for October 15, 1996 (my dad's birthday). This surgery was much more intense. Brittany knew more about what to expect after all she had been through. Everything was so much harder this time. The nurses and doctors had to pry her arms from around my neck while she screamed and cried, "Momma, Daddy, don't let them take me." And, hearing her crying and screaming "Momma, Daddy," as they pushed her through the O.R. doors was so hard, I just wanted to run after her and grab her up in my arms and hold her. After nine hours of surgery, we finally got to hold her. Dr. Petronio removed 90% of the old tumor and 90% of the new tumor and drained the cyst. Brittany lay lifeless for several days after the surgery. When they got her up, she had to be strapped into a wheel chair, because she could not hold herself up. She wanted to see her cat Toby. We arranged with the hospital for Derrick and Brandi to bring Toby to the hospitals garden. She was so excited to see him. We had to hold her hand up so that she could pet him.
One night my Daddy and Momma wanted us to go home, just for a break and to spend time with Brandi, but on the way home my daddy called and said that Brittany's body was drawing and they were about to take her in to do a spinal tap. I told him that we're turning around and coming back to the hospital. He said that by the time we could get back they would be done, just to go on home, and they would call us. Daddy called us at home and said that Brittany was ok and that they had given her some medication. I will never forgive myself for not going back to the hospital. After eighteen days in Egleston and a lot of pleading (they wanted us to stay another six weeks for physical therapy) we went home continuing her intense physical therapy with a homebound therapist. During this time we also had a homebound teacher to work with Brittany. While she was in the hospital she had physical therapy, speech therapy, occupational therapy, and she attended a special school for kids in the hospital. Before this surgery Brittany could walk, run and play just like any other child. After this surgery she had to learn to walk again and how to redefine her motor skills. No more running to catch fireflies at night, something that she had always loved to do. She went in walking and came out in a wheelchair. When she could walk with assistance she had to go to Egleston twice a week for physical therapy, speech therapy, and occupational therapy. She was put on a steroid when she was in the hospital and when she was released she was still on it. She had to be weaned off of it. This is when her weight more than doubled. She had been tall and slender for her age. She never lost the weight. She ate a can of ravioli every hour. This time was worst than before.
Since then, she has undergone two surgeries to implant two different catheters that lead through her brain into the cyst. The cyst has to be drained usually every two to six weeks. Sometimes, he drains as much as 27cc of fluid. This is when they started talking about chemo therapy. We talked everything over and the doctors decided to try injecting the cyst with Isotope or p32. For the first year that her cyst had to be drained, she was awake, with no medication, while the procedure was done. Dr. Petronio's assistant Christine Narad would sit on the bed and hold Brittany's head in her lap and talk to her while Dr. Petronio cleaned the area where the needle would go in. Then he would insert a butterfly needle into a cap that was just underneath her scalp, the cap used to close off the end of the catheter. The catheter was about the size of a piece of spaghetti. He would insert a butterfly needle that was connected to a long tube that was connected to a syringe then he would pull back on the syringe and that would drain the fluid from the cyst. Now, because of her anxiety, they decided that it would be better if she is put to sleep every time the cyst is drained. She had to have it drained so often, that sometimes it would hurt. We have therapy in Dalton several times a week now.
January 1997, we now have a new neurosurgeon, Dr. Mark O'Brien. She's had several injections of Isotope (or P32) which is a radioactive element. It has to be flown in from South Ga. I think. We are told that if any of the p32 spills or somehow leaks; we all will be under quarantine in that same room for 30 days. After the p32 is injected they use a Geiger Counter to make sure there are no leaks. Isotope is injected into one of the catheters, it is supposed to kill the lining of the cyst (no luck with that so far). She has to have the cyst drained so much that I am so worried. Every one tells me about an article they've read or a program that they've seen and about different doctors that they have heard about. So I decide to check them out. I call Egleston Hospital and request for copies of Brittany's latest MRI and her surgeries. Brittany's wonderful pediatrician, Dr. Vladimir Spira gives me an article about Dr. Keith Black at Cedars Sinai Hospital, he is a pediatric neurosurgeon. I call his office and tell them about Brittany and they suggest that I send everything that I have to them so that the doctors can review her records. After a few days I receive a call from one of the doctors and they recommend chemo therapy. The doctor says that the chemo they recommend is one of the worst kinds. But they would have to see her to make a definite decision. The next doctor is Dr. Fred Epstein of Beth Israel, after reviewing everything he called and said that he thought that he could remove the tumors and cyst, but there would be a great risk trying this. He said that first he would have to see Brittany and evaluate her. He told me that it would be a long hospital stay and if there were other children at home that I should really think about everything he had told me. Then I spoke with Dr. Don Long at John Hopkins, they recommended that the catheter be put in another place.( she had a catheter in the top of her head, later after that one stopped draining they put another one into the back of her head). I spoke with St. Jude's, hospitals in Cincinnati, Texas, Chicago. I really appreciate everything these great doctors have done, but after a lot of praying we decided to stay with Egleston.
During Brain Tumor Clinic, Dr Lillian Meacham, her endocrinologist, suggest that due to the location of the tumors and cyst, she has to have an injection of a hormone drug, Lupron, every month. She has to have the cyst drained every so often now, but not as much as before, she still has brain tumor clinic every three months. After many MRI's, C. T. scans, a spinal tap, ultrasounds, bone scans, x-rays, and too many other things to mention, she has started questioning why this is happening to her. She still has trouble with her balance and needs her wheel chair. Her memory and fine motor skills are not the same as before the surgeries. Sometimes she does not want to go back to the hospital to have her cyst drained. She says that she wants to give up. Hearing her say this is as heartbreaking as when we first found out about the tumor. I didn't think that my heart could break again. I gathered myself together and tell her "PLEASE DON'T EVER GIVE UP, we love you too much, we've fought too long and hard to just give up. You've are an inspiration to so many people. So many people love you and tell other's about how much faith you have. There are so many people praying for you. Brittany, all you have to do is ask God to give you strength and His healing touch and ask God to give the doctors the knowledge and his guidance to heal you. We know that God is going to heal you, we just don't know how or when." While hurting on the inside and tears blinding me, I try to comfort her.
"I have good plans for you, not plans to hurt you. I will give you hope and a good future.
Then you will call my name. You will come to me and pray to me, and I will listen to you. You will search for
me. And when you search for me with all your heart, you will find me!"