Battle for Burke

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Friends, family and everyone out there,

Burke’s Battle is excited to team up with Press On with our fundraising efforts. Press On’s mission is to fund less toxic, more effective treatment for neuroblastoma and acute myeloid leukemia. It is an honor to be a part of their team and, together with your support, we can all find a cure one day.

As many know, Burke was diagnosed with Stage IV Neuroblastoma on February 4, 2015, when 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.” He had symptoms for months and after seeing dozens of doctors, this was a major setback with news that we did not expect. Life is tough, but you deal with the cards you are dealt with as best you can. We have a tough hand to play and we will do everything in our power to beat this.

A few months prior, life was going great. We recently moved in to our new house and were expecting our third child. A few days after Eila was born, Burke started to show initial symptoms. 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 “peri-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 (which other NB kids have been diagnosed with prior to receiving the correct diagnosis). Several weeks later, his right eye started to wander. After seeing and being referred to multiple eye doctors, we finally fell in to the right hands to see Dr. Phoebe Lenhart at Emory Eye Center who ordered the MRI. Since then, Burke has lost vision in his right eye due to the tumors pressing on the optic nerve. We hope a miracle happens one day and he can see out of that eye again, but in the meantime, we have bigger issues to worry about and Burke has adjusted just fine with his left eye.

Burke has gone through 5 rounds of various chemotherapies, surgery in New York to remove the main tumor, two MIBG Therapies and multiple CTs, MRIs, MIBG scans, xrays, blood transfusions and pretty much weekly visits at the hospital. All of this and we are only a little past half way through the standard “protocol.” The typical frontline protocol is 12-18 months and even once he gets to be NED (No Evidence of Disease), there is a great chance of relapse during the first 5 years. Even avoiding relapse, there are other side effects such as secondary cancers caused from the treatments that helped get him to remission.

Fifty percent of kids that have neuroblastoma were misdiagnosed. Only 700 kids are diagnosed with NB in the US every year. Burke is 1 in 100,000. Only 4% of the funds from the National Institute of Health’s cancer budget go to pediatric cancer and almost nothing of that goes to research. This obviously needs to change, but in the meantime everyone can help by donating to non-profits like Press On that fund pediatric cancer research, specifically neuroblastoma and AML. The current survival statistics are unacceptable.

Life can change in an instant. 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 continues to fight this nasty disease, and we plan to win. Burke is currently doing great as we are in between treatments awaiting scans. He rides his scooter like a 4 year old in the Xgames, jumps on the trampoline, runs like crazy, fights/plays/loves his sisters Karaline and Eila, rides his bike, plays like a normal 4 year old and cruises around in his new Teenage Mutant Ninja Turtle Power Wheel Jeep like Dale Earnhardt Jr! Burke is our hero, our champion and our little ninja… he will win the battle and the war, but he and other kids need help along the way to raise awareness and to fund research for childhood cancer. We want to thank everyone from the bottom of our hearts for your generous support, love and continued donations so one day we will find a cure.

Love,
Ryan, Meghan, Karaline, Burke & Eila

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Round 4 Continues

by Sarah T. ::

5/18/16:  We are in the middle of Round 4 Immunotherapy/Chemo this week.  The first 2 rounds were extremely rough, with flu like symptoms for 2 weeks.  Round 3 and 4 are much better andBurke continues to amaze us with his strength.  He is back to playing like a normal 4 year old now.  We will […]

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Chemo Round 2

by Sarah T. ::

3/28/16:  Today we checked in to Scottish Rite for Burke’s 2nd round of a newer treatment for refractory (stubborn) neuroblastoma, Immunotherapy with 2 types of chemo.  Prior to this (and after the updates above) Burke had a Stem Cell Transplant during late November and early December (3.5 weeks inpatient).  It was a rough couple of […]

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