August 11, 2010 was a special day for the Buron family, our first born was brought into this world. When we held her for the first time we knew she was something special. Her name was Emma Rae Buron and from that moment on she changed our lives for the better. She grew up a healthy child. She was a kindhearted girl, who enjoyed the outdoors and loved animals, especially insects. She was a fish at heart and loved the water. She had a sassy attitude and could make anyone laugh with her silly sense of humor, she loved arts and crafts and wearing pink leggings with her signature cowboy boots.
In August of 2016, Emma turned 6 years old and she was the big sister to Elliott (3) and Eugene (1 month). Her biggest joy was having a baby brother. She loved helping us care for him and was very attentive to his every need.
On Monday, September 19th, Emma came home from school and had trouble focusing her eyes, she would tilt her head down and roll her eyes up trying to look at things. The following day we noticed she was doing the same thing and Emma told us that she could see “two of me.” I set up an appointment with an optometrist to have her seen immediately and she was prescribed glasses to attempt to correct what we thought was just a vision issue. When Emma tried on her glasses for the first time at the optometrist she was immediately frustrated and she complained that she still had double vision. The doctor told us to give it a month for Emma’s eyes to adjust to the glasses. The following weeks Emma was still having double vision and she began complaining of headaches and was napping quite often. We just knew something wasn’t right. I then called her PCP to get a referral to a pediatric ophthalmologist so they could further evaluate her.
The day of Emma’s diagnosis (October 17th), we went to the ophthalmologist and right away he diagnosed her with sixth cranial nerve palsy. He told us we needed an MRI to further evaluate and we needed to see our PCP to make sure nothing else was going on. We headed straight over to see him. He was very concerned because at this point Emma’s balance was off as well. We then scheduled an MRI for the next morning. That next day never came, we went home and Emma was coloring a picture on the living floor. She came over to the kitchen to show me and went to climb the kitchen stool and lost control of her body. She fell to the floor and was unable to get up. We immediately knew that there was something seriously wrong. We rushed her to Helen Devos Children’s hospital and within thirty minutes she was given a CT scan. After the scan three doctors escorted us to a small room and told us that Emma had a large mass on her brain stem. We never have felt so helpless in our lives. The hardest part of the whole process was trying to gather ourselves and put on a smile to go back into Emma’s hospital room to see her. Walking into the room knowing the seriousness of the situation was difficult. It was heartbreaking knowing our sweet princess was going to have to go through an unimaginable experience that no child should have to go through. That night we were introduced to Emma’s oncology team. In less than 24 hours we would get the heart shattering news that Emma had a rare brain tumor that sits on her brain stem located in a vital area called the pons. Diffuse Intrinsic Pontine Glioma (DIPG).
The next day we met with our oncologist to only discover just how limited our treatment options were for DIPG and how little advances were available for this type of brain tumor. It was horrifying to find out in over 40 years of its scientific existence the treatment options are relatively the same: radiation and palliative care until the child eventually succumbs to the cancer. We couldn’t believe that there was nothing that we could do. However, our oncologist presented different clinical trials from all over the world. Some required biopsies and others did not. We realized that the biopsy process was still really new and that there was a great risk to get the information that may help Emma but the pros definitely outweighed the cons. The best thing about it was that it could be done at Helen DeVos Children’s Hospital and we could stay close to family for love and support.
A few days later she had the biopsy done with no complications. Her tissue would then be sent on for a molecular guided trial that was open at Helen DeVos Children’s Hospital. We continued with the standard care of radiation therapy. She had treatment for 6 weeks and on the 4th week of radiation chemotherapy began. We are now doing outpatient physical and occupational therapy to help regain her strength and function on the right side that was affected by her tumor.
We want to thank all the staff at Helen DeVos Children’s hospital for everything they have done for our sweet Emma. We still have a long way to go! Please join us and Milan Miracle Fund on this fight to help spread awareness and to find a cure for this so called “rare disease.” Your donations to Milan Miracle Fund help the wonderful doctors doing this life saving research to find a cure for DIPG.