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 IU 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.. 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. 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 with her until it was time. 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 groggy 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.
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, 2011 with Vinblastine, where Grace received treatment every Tuesday for 52 weeks. Grace finished the treatment on Feb. 14, 2012 and has been on a break from chemo since then. She will have her MRI’s every three months and as long as tumor stays stable then they will hold off on treatment. If at anytime the MRI shows any activity or symptoms appear then Grace will then go thru a stronger chemo/radiation regimen. Her next MRI is Aug 6 2012! We will never stop praying for a MIRACLE!!!
Grace lost her best buddy Brianna McQueen in March to a brain tumor...Bri was only 9! Help us raise money to find a cure!