This week has been all about Patrick and neuroblastoma. Today, meet Press On Hero Burke the Brave and read all about his own journey with neuroblastoma.
Meet Burke the Brave
From Burke’s parents
On February 4, 2015 we received news from the results of an MRI that no parent should ever hear: “Burke has metastatic disease in multiple areas in his head, go to the ER now and an oncology doctor will be waiting on you.” The next day after a biopsy we discovered Burke had Stage IV High Risk Neuroblastoma, a word we had never heard of until then. Now, we can tell you more about Neuroblastoma than you would ever want to know. Burke’s symptoms started in mid/late November, a few weeks after our third child was born. Daily fevers, night sweats, stiff neck at night, leg pain and swelling of the right eye lid. The first admission to the ER was early December. After three days inpatient with symptoms subsiding, he was released with “perio-orbital cellulitis”. Then not even a week later, symptoms started back again. This time, his left eye lid started to swell. On Christmas morning, we went back to the ER. After a week stay and a negative “flow test” for Leukemia, Burke was diagnosed with Systemic Juvenile Idiopathic Arthritis. Several weeks later, his right eye started to wonder. After seeing and being referred to multiple eye doctors, we finally fell in to the right hands of Dr. Phoebe Lenhart at Emory Eye Center who ordered the MRI.
At diagnosis, Burke’s bone marrow was 90% infiltrated with Neuroblastoma cells, he had a tumor off his adrenal gland the size of a softball, vision loss in his right eye from a tumor (was close to losing vision in the left) and he was a 22 on a scale of 30 of soft tissue tumor spots throughout his little body. Burke has gone through five rounds of various induction chemo’s, surgery in New York to remove the main tumor, two MIBG radioactive Therapy’s where he was on isolation for four days each, high dose chemotherapy that wiped out his immune system and blood counts followed by a Stem Cell Transplant that included a 3.5 week stay at the hospital, 12 rounds of daily radiation to four spots including two spots on his head, five rounds of Immunotherapy with Chemo and multiple CT’s, MRI’s, MIBG scans, X-rays, blood and platelet transfusions, bone marrow biopsies and pretty much weekly visits at the hospital. We have spent over 100 nights in the hospital and have had over 70 outpatient clinic visits. On April 15, 2016 we were extremely proud to announce that #burkethebrave was finally officially NED (No Evidence of Disease)!
Life can change in an instant and you deal with the cards you are dealt with. Burke has been unbelievable throughout this entire process and continues to amaze us and every doctor. Going to the hospital for him is basically like going to school for most kids… he is used to it. He has completed taking daily maintenance pills (Accutane) that he was on for 12 months. Burke has had three follow up scans since becoming NED and we are excited to say all have stayed clear (most recently on June 1, 2017). On June 20, 2017, he started DFMO which is showing signs to potentially help prevent a relapse in Neuroblastoma kids. The drug is a Phase 2 trial and Burke will be taking three pills twice a day for two years while we continue to scan every three to six months. Burke is our hero, our champion and our little ninja… he has won the battle and will win the war (chances of relapse are high as we will live in fear forever), but he and other kids need help along the way to raise awareness and to fund research for childhood cancer. Please help! #burkethebrave
P.S. Our goals for ACTION are so audacious they literally cannot be achieved without your help. For the entire month of September, every dollar donated to Press On ~ up to $250,000! ~ will be MATCHED for Target Pediatric AML (“TpAML”), a MOONSHOT project aimed at identifying genomic targets for pediatric Acute Myeloid Leukemia patients so that researchers can create specific, targeted treatments. These targeted ~ and consequently less toxic ~ treatments FOR KIDS are what Press On is all about! Please, if you are comfortable doing so, take just a few minutes of your time to DONATE NOW and SHARE today’s blog post on your Facebook page, or share via personal email with friends whom you believe have the passion to help us make a difference.
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