Xander

Xander and his family have teamed up with Beat Nb through our Because of _____ program. Beat Nb is a national childhood cancer nonprofit which drives research into a cure for neuroblastoma. Learn more of how we are helping to cure childhood cancer.

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Because of Xander we are fighting for our kids against neuroblastoma and childhood cancer.

During the night of 5/24/2015 Xander was extraordinarily restless and got up several times unable to get comfortable. The next morning, Memorial Day, Xander was crouching and wouldn’t walk. We went to the pediatrician who sent us to the ER for an ultrasound. The ER denied the test and sent us home. The next day Xander underwent an ultrasound and X-Ray which determined there was indeed an est 9cm abdominal mass nestled above the adrenal gland pressing on his organs and wrapped around his aorta. The radiology office sent us to the pediatrician for the result, the pediatrician reassured us that cancer was so unlikely…. “Pediatric cancer is very very rare!” He said, tomorrow we can set you up for some further tests at the children’s hospital…. No, can’t we go today?

That night they told us what they thought it was. The next two days Xander underwent several tests and a biopsy.

On Friday, 5/29/15 my soul shattered. It splintered and scattered …

“So the results are back. It is what we thought, it’s Neuroblastoma. Neuroblastoma is a cancer of the………” {shut up just shut up omg my child is going to die, he’s 4years old!} “he is at STAGE 4…. ” {what? No? No no no no no please no} “HIGH RISK”.

“HIGH WHAT? HIGH RISK?” It gets worse than stage four?” I can’t feel my body any longer. This is NOT REAL “omg so it’s as bad as it can get?”

“No there’s one other cancer that’s worse, it’s DIPG” they said, “let’s go over the road map”

Road map? “Just tell me do kids beat this? And do you lose sleep at night?”

Today Xander is NED,  NO EVIDENCE OF DISEASE! As of 6/15/16

Xander under went the road map as per COG protocol. Parts of it were smooth, parts of it were nightmarish. He has cytotoxic consequences including cognitive, heart damage, and hearing loss. I have PTSD and vacillate between ferocity and pending doom. But he made it here to his final round of front line and he is staged at NED. To say Xander is in the safety zone … Would be a dream come true! With the work of Beat Nb this is a closer reality. See, neuroblastoma has a very high relapse rate. Recently the NMTRC released the data from a study demonstrating that a medication referred to as DFMO is preventing relapse in 88% of our NB kids! These studies were funded greatly by Beat Nb.

Because of Beat Nb, Xander gets an 88% chance for event free survival! up from 50%, by raising the necessary funds in a collaborative effort to do the research, run the trials, and present the data of the study conducted by the NMTRC. Ou kids need this work to continue. We need unified structured efforts and to mtake ACTION against Childhood Cancer. Join me in supporting Beat Nb Because of Xander… Let’s X out Childhood Cancer!