We were woken in the middle of the night in November 2009 to our 2 year old daughter Emma (affectionately known as Emms) having a seizure so we rushed her to the local hospital. After the doctor and nurses were able to stop Emms from seizing they sent her to a bigger hospital for further testing. Emms had her first MRI that showed a little spot in her frontal lobe so the doctor said we should meet with a neurologist. That is where our journey started at Vanderbilt. Emms spent a week in the EMU (Epileptic Monitoring Unit). She had to wear EEG leads for roughly a week so they could monitor her seizures. The doctors were amazed at how many seizures she was having daily, which we were told was between 80-90 a day. After a week of trying different medications to get the seizures under control they were able to do an MRI. The next day there was a knock at the door and when I opened it there was 3 doctors asking to speak with Kelley & me, and a nurse to watch Emma. We were walked down to the quiet room and told the news that no parent should ever hear about their child, your child has CANCER. That is the last thing I remember them saying. We were given a minute to gather ourselves before going back in the room with Emms. We open the door and there is our daughter with her beautiful smile waiting on us.
We go from meeting with the Neurologist to meeting with the Oncologist. The plan was to do a biopsy of the cancer to see what we were dealing with and decide what actions to take. After her 1st surgery they decided her cancer was a PNET. The course of action was to start with chemo to see if it would shrink the tumor in her brain. Emms went thru 6 rounds of high dose chemo. This required us to stay at the hospital for up to two weeks at a time. The chemo would take effect and Emma would not be able to keep food down and have low energy. At one point she was having to bathe every 6 hours because the chemo excreted thru her skin. However, she was amazing. She would go from literally not being able to lift her head one day to waking up the next running out the door to play with her nurses and flashing her special smile. After the final treatment they ran another MRI and it showed the cancer hadn’t spread but it hadn’t gone away either.
Because the chemo was not shrinking the tumor the next plan was to do radiation. That is how we ended up at St. Jude. After the doctors met and looked at her case they wanted to start with a surgery to see if they could remove the tumor. The surgeon looked at her MRI and felt confident he could get it without damaging any functions. The surgery was a success and the doctor said he was able to remove all of the tumor. This was the highest emotionally we had been since the journey started. Unfortunately with cancer nothing is this easy. After studying her tumor they changed her diagnosis to Glioblastoma Multiforme. This was not the news we wanted to hear because with this form of cancer, even after surgery and removing what is visible, it grows microscopically and spreads like tentacles. St. Jude decided to do targeted radiation to focus on where the tumor was prior to being removed and try and kill anything that the surgeon did not see. Emms went thru 6 weeks of 5 day a week radiation like a champ. When the radiation was completed she had even stopped having seizures.
A few months we were on our fist family vacation in two years and on the second day Emms had a seizure. We were rushed to St. Jude and the MRI revealed the cancer was back with a vengeance. Unfortunately she had already taken high dose chemo and radiation so there was not much more to try. She was sent home on oral chemo to see if the doctors could find a silver bullet.
Her last MRI revealed that the cancer had spread to several parts of her brain and we were told the unfortunate words that no parent should ever have to hear. There is nothing else we can do for your daughter. Those words broke my heart and they still do today. We were sent home with hospice on a Thursday and the doctors didn’t expect her to live thru the weekend. In true Emma fashion in proving them wrong, she battled for another 6 weeks with her determination and her smile.
Emms was the strongest person her mom and I have ever met. She taught us about love, courage, faith, bravery and how to dance in the rain. We are forever grateful she was given to us for those four short years. We continue the battle in her honor and memory in hopes that no other family will hear, there is nothing more we can do for your child.