Meet 2019 Hero Bennette Wolf!
Bennett was born with Hemimegalencephaly, a condition which causes the brain to form irregularly and larger than normal. When his mom was 20 weeks pregnant, a malformation was noticed via ultrasound. A few weeks later, a fetal MRI at Texas Children’s helped to find the diagnosis. The team has seen less than 5 cases, as it is extremely rare.
The Wolff family relocated to Houston in January, although Dad continues to drive back and forth from Alexandria to Houston every week for work. On February 20th, Bennett and his twin sister, Reese, made their arrival. By that night,Bennett’s seizures began.
The NICU team is currently treating the seizures with medication. There is talk of brain surgery, but they are hoping to hold off until he is older since the risks of surgery in a newborn are much higher.
Written by his mother - Katelyn
Meet 2019 Hero Emmi Jo McCoy!
Eight year old Emmalin McCoy (aka EmmiJo) is the middle daughter of Adam and Sarah McCoy. Just after Emmalin turned 2 she started having headaches. At the end of November 2012 after many, many doctors and specialist visits we decided to go to the ER because nothing was helping ease the pain. A CT scan found a large mass on her brain and we were sent to St. Jude Children's Research Hospital. St. Jude diagnosed Emmalin with a Juvenile Pilocytic Astrocytoma on the Optic Pathway (JPA) with a B-Raf gene mutation. This is a low grade slow growing tumor but was already very large. On November 30, 2012 Emmalin had surgery to remove as much as possible. Her doctor and Surgeon said they felt like they got about 80% of the tumor which was compared to the size of a tennis ball. Eight weeks later at check-ups Emmalin was doing great, but doctors saw a small amount of growth and damage to her vision in her right eye and peripheral vision on the left side. Doctors decided it was best to start chemotherapy. Emmalin was on three chemos that were rotated on a cycle for 77 weeks. At the ending of chemo the tumor seemed to be stable with very low signs of growth.
In 2015 after fourteen months the tumor started to grow a little but because there are few chemo that are effective on her type of tumor her doctors and us decide to wait a until the next check-ups (3months) to see what happened. When we went back the tumor had almost double in size and we knew it was not safe to wait. Within a couple weeks Emmalin started chemo for the second time in November of 2015. Emmalin handled this chemo well but after 3 months on it the tumor was still growing and starting to take more of her vision. St. Jude had just opened their Proton Radiation Therapy Center and Emmalin's doctors decided this was her best option to stop growth and save as much vision as possible. In April of 2016 Emmalin started 6 weeks of radiation treatments. For the first year after completing radiation the tumor continued to shrink a little and then for the past 1 1/2 years has not shown any signs of change.
Now we are in what is condsidered the maintenance stage where we are managing the delayed side effects from all her treatments. In November 2017 Emmalin was diagnosed with Adrenal Insufficiency. This is a side effect of radiation being so close to the pituitary gland and will effect her for the rest of her life. We most recently found out in Dec 2018 that Emmalin also has a growth hormone deficiency along with some other hormone issues. Both of these things will require medications (1 she has already started the other hopefully by summer)
Sometime after surgery in 2012 Emmalin developed a small aneurysm and narrowing of some of her blood vessels (vascular stenosis). Since this was found in 2013 her doctors check the aneurysm and her blood flow everytime she has a MRI (every 3-6 months). As of Dec 2018 they feel Emmalin may not be getting adequate amounts of blood flow to one area of her brain and decided to do another angiogram in February 2019. It has been determined that the narrowing on the left side of the brain has gotten worse and that there is new narrowing (or stenosis) on the right side of her brain. Emmalin is being monitored very closely for stroke symptoms and will be taken to a hospital at the first sign of any trouble until returning to St Jude in June to repeat all scans and test.
Currently Emmalin is a happy, vibrant, loving, little girl who we continue to thank God everyday for watching over and protecting Emmalin and giving us more time with her.
Written her mother - Sarah
Meet 2019 Hero Blaise Brouillette!!
Blaise was born on November 9, 2018 with infantile fibrosarcoma to his left forearm. During his first two weeks of life the tumor grew rapidly to 28cm. He was started on a newly FDA approved oral chemotherapy drug called Larotrectinib (LOXO). This type of chemotherapy targets a certain type of TRK gene in the tumor and shows encouraging antitumor activity by decreasing in size . He is the youngest patient to receive this miracle drug , and we are forever grateful to God , St. Jude and Larotrectinib for saving his life and his arm . Blaise will continue the loxo until the tumor is completely gone or small enough to remove with surgery . He has been through more than you could imagine in his first 3 months of life but God made this little man STRONG , and I’m so proud of him . God has a wonderful mission for Blaise and he has been given Gods grace for his race. ❤️
Written by his mother - Lily
Meet 2019 Hero Sadie Corbet!
Sadie Corbett was born at Cabrini Hospital on June 21st 2018. 6 hours after birth she was diagnosed with hypoplastic left heart syndrome meaning the left side of her heart was underdeveloped. That night she was flown to Oschners Children in New Orleans. The cardiologists in New Orleans told us that she would need three surgeries in order to live. Sadie underwent her first open heart surgery at 6 days old. She had minor complications and and had to undergo two more minor surgeries. She had a plication and a G-tube placed. After 60 days we were finally able to come home. On January 9th 2019 Sadie had her 2nd heart surgery which turned out to be another successful surgery. Sadie continues with her bi-weekly doctor visits, monthly Echoes , and EKGs. she will have another heart surgery coming up when she is about 3 to 4 years old, this will hopefully be her last surgery.
Written by her mother -