The day you realize your child is extremely sick your world changes, everything around you doesn’t matter. That day for us was 2/26/2010. Gracie woke Stephanie up at about 8:00 that morning and was just talking to her, doing her normal thing. Stephanie realized that her muscles around her right eye were twitching. It went on for a minute or two and stopped. Grace was able to talk during; however, she was a bit disoriented afterwards for a little bit. At first Stephanie dismissed it; however, when Grace had a second one a little while later, her mother’s instincts kicked in and she took her up to the hospital at Clarion West out near Avon, IN.
The front desk in Emergency didn’t really take her seriously until Stephanie slammed down her fist on the desk and told the attendant that she thought Grace was having a stroke. Well that did it, they took her back immediately and checked Grace out. After talking to the doctor for a few minutes the belief was that this may be a seizure that children have sometimes which can be normal. But, to ease Stephanie’s mind the doctor decided to do a CT Scan. Stephanie and I were texting throughout her ER visit, so I was aware, but not in on site. Since this may have been a pseudo-normal seizure I didn’t rush down immediately. I knew they were going to have a CT scan done; however, I didn’t hear from Stephanie for some time. I knew her cell phone battery was going dead, so I figured it died and I probably should head that way.
As I was driving to the hospital I received a call from an odd number, I answered thinking it might be Stephanie. The results from the CT were clear, Grace had a large tumor in the right frontal lobe. I remember screaming NO, GOD NO! And I nearly hit the guard rail. They were going to transfer her to Riley Hospital right away and she would probably have surgery that evening. I swerved immediately onto interstate 70 towards Riley Hospital. I told her I would be there waiting when they got there.
. As it turned out the localized seizure Grace was having is very difficult to recognize. The neurosurgeon would later estimated that 80% of the nurses would not have been able to pick up on it. And when I saw her have the first one in front of me in the recovery, I was surprised that was a seizure. I have those minor version of those muscle twitches above and below my eye when I’ve had too much caffeine or not enough sleep. Stephanie was a moderate to severe handicapped teacher previously, so she had experience with kids with seizures, which would make a big difference.
After they arrived at Riley ER, the nuerosurgeon came in and explained that he would need to have an MRI done so he could get a better look at the tumor. Because Grace was only 3, they would have to sedate her, so they said that we could go get something to eat since it would be about 2 hours before they would be finished.
Out of recovery, we were transfered up to ICU where Grace was put on steroids to help reduce the swelling in the brain as well as anti-seizure medication. The swelling as it turned out was the cause of the seizures she was having. That Friday to Saturday am we figured Grace had 12-15 seizures, the last of which was at about 2:30 am on Saturday.
First thing Saturday(2/27/2010) morning the neurosurgeon was in to talk about Gracie’s condition and briefly about the surgery. The surgeon believed it was a type of tumor called a giloma. Which as I understood it, the brain primarily contains two types of cells neurons and these support cells. A giloma is basically an over-growth of the support cells.
As far a surgery went, he would start by shaving a 2″ wide patch over the top of her head. Then he would make a zig-zag incision ear to ear over the top of her head. The skin would be pulled forward and the a section of bone over her right eye would be removed. Then he would make a tunnel back to the tumor (through the brain tissue) in the front. From there he would find the borders of the tumor and remove the tissue. Up to this point, I was holding out hope that the tumor was on the surface. I knew it wasn’t , but somehow I was hoping I misunderstood. I also knew as soon as the tumor was not on the surface the risks went up drastically. As he explained it, she could have weakness on the left side, personality changes, and changes in her sense of smell. There are other risks, but these were the three biggies.
The issue with her sense of smell was minor and would probably go away. Weakness on her left side was tough to swallow, but she could do therapy to help her regain better control of her left side. I would hate to have seen her go through brain surgery and not be able to use her left side or walk. But she could do physical therapy and work through her weakness on her left side. Unfortunately, it may mean she may not be as active as she is currently. Of the three, the personality changes is the one that really scared me. That one really bothered me as she could come out of surgery and not recognize Stephanie or I. Simply put we would not be able to know if any personality changes would occur until the days after surgery.
On 3/1/2010, Surgery Day! Surgery was scheduled for first thing and was expected to last the better part of the day. By 7:00am, Stephanie and our immediate family were sitting at her bed. This was one of those times when we really broke the 2 people in a room at a time rule. The nurses were very understanding. We all took turns taking pictures with Grace in various groups and giving kisses. Grace was able to get in a little coloring as well before the Nurse came in with her “cocktail”. Grace took the syringe and downed it. She was sitting on my lap at the time, gave me a kiss and within minutes she was acting a little tipsy. Andrea said the prayer, and Grace gave a few last minute kisses before mommy picked her up. Mommy promised her that she would be with her the entire time and that everything would be ok. Stephanie and I carried Grace down to the entrance for surgery. Grace while drozy didn’t really want to go to the Nurse. She really wanted mom to dress and take her into surgery. Stephanie talked her into going to the nurse, she put her head on the nurses shoulder and didn’t make a peep.
Stephanie and I walked back to the room where the rest of the family was. I was filled with emotion as I was afraid the daughter I knew may not be the same girl that comes out of surgery. Since she was undergoing brain surgery it was entirely possible that she could have personality changes and/or loss of mobility. This was very tough to swallow. With the rest of the family we headed up to the waiting area, where we would wait for the next 6 to 8 hours.
Our updates from the nurse came every hour and gave us info on how she was doing. During this time we were all high emotion; however, we had a lot of friends and family there that helped both of us stay busy and talking. I know I didn’t have much down time between fixing the laptops and talking, which kept me from really thinking about the risks of what Grace was going thru. One update from the Nurse informed us that pathology was unable to determine the type of tumor from the first sample, so a second sample was taken and sent off. We were told that this does occur on occasion where a second sample was needed.
As soon as the surgery was over we went down to meet with the surgeon. He thought when he went into surgery that she had a type of tumor that was basically an over growth of support cells in the brain. Unfortunately, what he found was not what he expected. This is where we were told she had an astrocytoma. It also meant we would need to meet with oncology to discuss chemo. Grace had little bit of time in recovery before we would be able to go in and see her. Stephanie was crying and I too was having trouble with it. I was very positive up to this point. I went out and updated everyone on the bad news.
After about 20-30 minutes we were able to go in and see Grace in recovery. Grace had her head wrapped in a white bandage like a turban. As soon as Grace heard her moms voice she opened her eyes and said hi mom. She reached out and held Stephanie’s hand. Shortly thereafter, Grace tried to set up and even made it part way up before we stopped her. She probably would have set up if her head didn’t hurt. After about another 30 minutes, Grace was able to leave recovery and go to her ICU room. Once in ICU we were able to have people come in and see her for a few minutes. I stayed in the room with Grace and held her hand as family and friends came through and visited. She was asleep most of the time and didn’t move; however, a few people did cause her to perk up. One that really got us laughing was when Andy came in. Andy talked to her for a bit and told her to get better. Well even though Grace had her eyes closed, she wanted a kiss when Andy got ready to leave. It was very cute, seeing her mostly asleep, eyes closed and still wanted a kiss from Andy.
Over the next couple days, lots of good things happened. It was clear, our Grace was still the same little girl. Very quickly Grace stopped taking pain medication and her recovery was very very quick. The one thing we were worried about during her recovery was her motor control of one of her legs. By (I think) Tuesday we had Grace standing up to use the bathroom and it was clear that one leg was weak. It was bad enough that she shakes a bit, but we kept having her stand up for longer and longer period of time. By Thursday afternoon she was moved from ICU out a normal room in the heart ward.
The heart ward was very open and gave Grace the opportunity to walk to the waiting room, play room, etc. So we had pizza brought in put in the waiting room with family. Grace could eat all she wants, but we wanted to see if she could walk. She held mommy and daddy’s hand and walked. Her first few steps were a little shaky, but by the time we were half way there, she was walking without us. Her walking was still a little bit off on her left side, but she was walking nonetheless. In the break room she was jumping and even a little running. At this point we were really trying to slow her down. Less than 5 days from having brain surgery, the last thing she needed was to fall. Thankfully she didn’t fall or trip, but came close a few times. After about an hour, we went back to the room and Stephanie and Grace got ready for bed.
The plan was for Grace to go home Friday and it looked like she was ready to head out. I came back to Riley around 10am on Friday to see Grace sprinting down the hall. Yes, she was now running … One of the nurses mentioned to me that it was refreshing to see a kid running up here as they just don’t see kids up here running as most of the patients had heart problems. I continued to try to get her to slow down. Friday evening, the Neurosurgeon and a resident came by to see if we were ready to release Grace. Just as they were talking, Grace sprinted by them. They looked at each other and said “Yeah, she is ready to go home”. After receiving the release papers we headed home. Our next visit would be to a Oncology doc in a few weeks to get further details on the type of tumor and treatment. But at this point the prognosis was good as we believed correctly that the tumor was caught early and we still had our little girl.
Two weeks later Stephanie recieved the call from the oncologist. The path report from Mayo Clinic comfirmed that it was a Stage 2 Oligoastrocytoma, a very rare tumor found mostly in male adults (1.8%) and even more rare in a child! On April 23, Grace went to have her port placed and had her first round of chemo. Her treatment plan was 60 weeks of Carboplatin and Vincristine, so she would be finished up in May 2011 just after she turned 5. She would then go to Bloomington to do Proton Therapy to remove the remainder of the tumor. The point of the chemo was to keep the tumor at bay and no more growth. During treatment and the time between end of chemo and Proton therapy they would keep a close eye on the tumor with a MRI every 3 months. As of August Grace began having reactions to the Carboplatin and up until December 28th they were able to treat it with benedryl and steroids but her last reaction was more severe so chemo had to stop. A new treatment plan started Jan 4 with Vinblastine. So far Grace has tolerated it well. She has missed a couple due to low counts but seems to back on track. She will be finished with this treatment in January 2012. And that day can not come soon enough!!!