Julian's Warrior Battle

It is never easy to put your most vulnerable moments into words, much less written for the world to see, especially when those words seem to make it real.

 

On February 4th, we got a call from Karen's brother Eddie, telling us that his world had come screeching to a halt with the news that no parent should ever have to hear, "Julian has cancer." The news shook us to our core. Julian is our gorgeous, silly, outgoing, Grateful Dead and hippopotamus loving, fearless, blonde-haired, blue-eyed 4-year-old nephew.

 

The next day, Jules had surgery to biopsy the tumor and place a port in his chest. Countless blood tests, x-rays, CT scans, bone marrow sampling, and other tests soon confirmed the devastating diagnosis of stage 4 high-risk adrenal gland neuroblastoma.

 

The oncology team was aggressive in their treatment plan, and within a week, Julian started his first 5-day round of chemo. By day 3, a laundry list of terrifying complications landed Jules in the Pediatric ICU. What should have been an outpatient chemo infusion turned into hospitalization for the better part of a grueling 6 weeks.

 

Since his diagnosis 3 months ago, Julian has already battled through surgery, 3 rounds of chemotherapy, stem cell apheresis, a clinical trial targeted radiation therapy at CHOP, and a stem cell infusion. He is getting ready to start round 4 of chemo then more imaging to see if he is ready for the next surgery. His treatment plan is intensive and brutal and likely to continue for another 18 months to 2 years.

 

Julian Wilder Brinx has been dealt a shitty hand, but he is a mighty and resilient warrior. He is the sweetest boy with a fierce loyalty to everyone and everything he loves. When he isn't in the hospital, he is riding bikes, making art and music, climbing rocks, exploring the woods with his dogs and playing with his siblings-- an older brother (Kieran, 6) who misses his best buddy when he is away from home, and a younger sister (Raelyn, 2) who thinks the world of him.

 

And as for Erin & Eddie, we are sure that as parents, they have had to endure conversations and realities we will never know and face darknesses no parent should have to confront. We know there is no other option than to press forward, but we do not know where they find the strength. We continue to be amazed by them. Both parents refuse to leave Jules' side when he is hospitalized for treatments. When Julian started to lose his hair from the chemo, Erin let him shave her head first (he had never had a haircut before). Eddie has a way of calming and comforting with silent strength as he forges on to take care of his family.

 

Health issues and emotions aside, this has also been a huge financial burden on the family. They are looking at up to 2 years of disrupted and missed work (Eddie and Erin are both veterinary technicians at animal hospitals), scheduled and unexpected hospital stays and doctor's appointments in multiple cities & states, travel and parking fees, deep-cleans for their home for when Julian comes home after treatments, hospital takeout, new PJ's and blankets for when chemo gets rough (only the softest for Jules), and all of the new unknown cancer incidentals --- on top of their regular "everyday life" expenses and bills that come with raising a family with 3 kids and 3 dogs.

 

If you know us, you know we are not people that ask for much, but we are calling in all of our favors to help our nephew and his family see their way through this. We appreciate every donation, no matter the amount.

 

*Julian's parents would also like to express their immense gratitude to the entire medical community at St Joseph's Children's Hospital, Hackensack University Medical Center and the Children's Hospital of Philadelphia for the outstanding care Jules has received thus far in his journey of kicking cancer's ass. You are all heroes*

 

Never give up,

never surrender.

Little victories,

one day at a time.