Support Jace as the journey continues on..!
Donation protected
Jace was diagnosed in November 2015 with a left frontal temporal brain tumor with associated hydrocephalus. He underwent an endoscopic-assisted placement of bilateral ventricular catheters on 11/18/15. He then underwent a stereotactic guided left- sided frontal craniotomy for partial tumor biopsy on 11/20/15. Pathology reported that Jace’s tumor was a “Desmoplastic Infintile Astrocytoma” (low grade.) Jace started chemo on 12/10/15 in hopes to shrink the tumor. A year went by and the chemo had done nothing and Jace’s tumor continued to grow to be the size of an orange. The tumor began to cause Jace severe intracranial pressure and it was too much to bare. This led to a decompressive craniotomy where Jace had to have part of his skull removed to allow his brain swelling room to expand without being squeezed. Jace had the tumor resection surgery on 1/5/2017. After recovering he got transferred to Gillette Hospital for rehabilitation therapy. Exactly one month later, a CT showed relapse and Jace had to have another tumor resection surgery on 3/13/2017. He then began another chemotherapy regimen on 3/18/17. A few months went by and then unfortunately, due to progression yet again, Jace underwent another craniotomy on 6/29/17 to facilitate the resection of two tumors. The right frontal tumor showed Glioblastoma, WHO grade 4. (High grade) The left frontal tumor showed Anaplastic DIA. Jace then went to the Mayo in Rochester, MN and received Proton radiation for 15 days, starting on 7/17/17. He started another chemotherapy regimen on 8/23/17. The tumors stabilized for a short period of time but they started to grow back and he eventually progressed. At this point, there were no treatment options left until we discovered a clinical trial at St. Jude in Memphis, TN that offered a drug called Entrectinib. Jace started the trial on 4/18/18. After only two months, Jace’s tumors decreased in size by 75%!!!!! Thank God! Recently, in January 2019, Jace was diagnosed with a severe case of RSV bronchiolitis, requiring a life flight to Children’s Hospital in Minneapolis, MN for an extensive ICU stay and intubation as well as mechanical ventilation. During the hospitalization, Jace suffered an ischemic stroke which caused significant delays. He no longer can speak, eat orally, and has very little muscle strength. After a month long hospitalization for RSV, he then developed pancreatitis. Pancreatitis is considered a “level 4 toxicity” in terms of the clinical trial's protocol which unfortunately made Jace ineligible, so he got taken off the study and was no longer allowed to participate. Luckily, his doctor was able to get the drug (off study) for “post trial access.” However, during the time of not being on the study and before we could get the drug for post trial access, Jace’s tumors grew back by 80%. After getting over pancreatitis, he then was hospitalized AGAIN for RSV as well as Adenovirus. Poor Jace just cannot catch a break!! He is currently in the hospital trying to get over these infections. Throughout all, Jace has always pulled through and has proven doctors wrong, despite their concerns of Jace having little time left to live. Today, Jace is smiling and we thank God for the miracle he has given us! We continue to pray the Entrectinib is working (as it did before) and that he get over these illnesses so he can go home from the hospital. We have been on a very very long journey fighting for Jace’s life. As he requires 24/7 care for all his needs and has been in and out of the hospital so frequently, I have not been able to work. Any dontations are greatly appreciated !!!! Thank you.
gofundme.com/jacetelega
gofundme.com/jacetelega
Organizer
Amanda Birman
Organizer
Superior, WI
