Emily's Fight

Emily is a very inspirational young lady I have the pleasure of calling my daughter. She has been through a lot more than most adults I have met in my life. Back in December 19 2012 she wasn’t feeling well and was running a slight fever so she laid on the couch to rest after I gave her some Children’s Advil. About 10 minutes goes by and her little brother comes running in the room to get me and tells me “ Mommy Mommy something is wrong with Emily”
Of course at the moment I panicked! I run in the living room to find her repeatedly walking up against the wall in the kitchen and completely out of it. Trying my best to stay calm I laid her down on the kitchen floor and realized she was having a seizure. I have never been so scared and my other 2 children were right there seeing this all happen as they were crying and screaming her name I tried to keep my composure and assure them everything was going to be alright. After getting in the ambulance to get to the hospital she had 6 seizures. When we got there they gave her 2 separate doses of medication to stop them. They then did a CT scan and told me it came back abnormal. That it was either bleeding in the brain or a brain tumor. In shock I started to just loose it.
On this night we were experiencing some horrible winter weather and stopped all trips to Iowa City. No Helicopter flights or ground travel so they then sent us to Peoria 90 mins away in the ambulance. When we got to Peoria they let her rest until morning and then we went for the MRI.
The MRI results came back and she indeed had a left temporal lobe brain tumor and wanted to operate right away. She at this time was also fighting a horrible flu so everything was put on hold till she was over the flu and after Christmas so she could be home with her siblings for the holiday.
The day after Christmas we made the almost 2 hour trip back to Peoria and she had her first surgery. found out the the tumor was benign and felt like a burden was lifted from our shoulders. She then recovers greatly and after a few days we head home. Two weeks go by and we go back up because apparently they didn’t get the entire tumor so we had to go back for another surgery. Again she does real well and we get released.
So 9 months goes by and we go for a routine checkup and MRI. Only to find out that the tumor is back. She now had the option of getting a 3rd surgery with a high risk of stroke and speech impairment or we undergo chemo therapy.
At this time we got sent to Tennessee to go to St Jude in Memphis for better testing on the tumor and to see if we could find out why it came back. Emily undergoes yet another MRI and after a few days we are sent home. A month later we get sent back down to Tennessee only to Le Boneur children's hospital for surgery by the highly recommended and one of the countries best pediatric neurologists. After they do a MEG test a functional MRI and also a TMS test which she was the youngest patient to ever get one of these. The test showed what we already knew that they could go in and operate but it would effect her speech and her brain functioning and could cause a twitch in her face and she would struggle to talk as though you would when you know what your trying to say but just not being able to get it out. Also a likely chance of stroke while operating and she would still need chemo to shrink the rest of the tumor at that time the dr decided it was best not to put her through more than needed since chemo would be needed anyway to skip the surgery and start on chemo right away. Two weeks later we headed back to Peoria. She had her mediport put in and the following week started Chemotherapy. That was back in the end of Jan. and beginning of February 2014. She has now been undergoing Chemo in Peoria 1x a week since Feb. 10th 2014 and does great with the treatments although the night of and the following day are pretty rough she never stops smiling. As of September this year we found out Emily has a second tumor growing while undergoing treatment. With the MRI scans she gets every three months we track the progress of the treatment and the size of the tumors.
Update March of 2015. Her tumors have progressively grown in the last 3 months. The tumor on her left temporal lobe has almost doubled in size. In December 2014 when she got her last scans it measured in between 5-8mm. As of the last scans (3-6-14) it now measures at 12-14mm.  We have been waiting for well over a month to see a genetic specialist to get her tested for Neurofibromatosis type one (NF1) and her doctor is getting very frustrated. We have our appointment in April. If she does that will answer a lot of questions that we have. If not we have alot more research to do. The scans are being sent to Memphis and they will be reviewing them on the 23rd of this month. Based on what they say we will know what happens with treatment. There is a pretty good chance we won't be done in 5 weeks like we thought. If Memphis says the tumors are concerning like her doctor here thinks then we will switch treatments and there is a pretty good chance we will end up in Memphis for 6 weeks while she completes phase 1 of the new treatment. So we are back to waiting on answers.