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WHAT IT MEANS TO #belikejake

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JAKE "THE TANK" HONIG

March 8th, 2010 - January 21st, 2018

When some people pass away, their contribution to the world is done. Jake's has just begun.

 

Jake passed away from brain cancer, with a rare genetic disorder on January 21st, 2018. He was 7 years old. Here is a little about him, his fight, and his contributions.

Jake made everyone smile, no matter what kind of day they were having.

He had an ‘old soul’ and was important to him to follow the rules and always do the right thing. His sweet, charming personality paired with his courage, strength, and bravery, captured the hearts of everyone around him. Our entire community of Howell, NJ rallied around Jake and fed off his positive attitude. No matter what was thrown Jake’s way, he always had a smile on his face, and would live by the motto “Focus on the Good Stuff”. Jake became an honorary Howell, Police Officer, which prompted all 84 Howell Policemen and women to attend his funeral, along with honor guard, watching over his casket for the entire two-day viewing. To understand what it means to #belikejake, we need to go back to 2012.

Following surgery, Jake recovered well and went through 14 rounds of intensive chemotherapy, and 28 rounds of radiation, spread over a years’ time, at Children’s Hospital of Philadelphia (CHOP). He went into every treatment with a smile and made the most of his traitorous situation. He handled everything that toxic medication threw at him, like a champ. The 2 am trips to the hospital because of high-grade fevers, the mouth sores so bad he couldn’t swallow water, the flu-like symptoms, and so on. Jake had a port, which meant multiple times per week he was getting needles put into his chest. Children like Jake go thru hell, in hopes they will survive. Jake's positive attitude and the fight he put up during all of his treatments were inspiring to other children and adults. The nausea, vomiting, pain, hair loss and blood transfusions were no match for "The Tank". 

Children's Hospital of Philadelphia

Jake was diagnosed with a brain tumor, that had a rare genetic disorder in August of 2012. Jake was 2 years old. He underwent 7-hour brain surgery to remove the kiwi size tumor. That’s when he got the nickname Jake “The Tank”. Most people don’t open their eyes or speak for days after such an invasive surgery, but as Jake was being wheeled from the O.R. to his recovery room, he opened his eyes and said to his surgeon “I want pancakes and juice”. At that moment, Jake Honig became Jake “The Tank”.

 

Jake then spent 3 ½ years in remission, cancer-free.

During that time, we built many family memories. We went on vacations together and tried to live as ‘normal’ life as possible. Jake and his sister Gianna became extremely close. One of Jake's fondest memories is when we all met Golden State Warriors All-Star Steph Curry. Jake excelled in school, sports and social activities. During Jake's time in remission, he built so many strong friendships with kids and adults. Throughout the 3 ½ years, we tried to soak up as much of Jake as possible knowing that the possibility of his cancer returning was very real.

Jake's treatment remained at CHOP and a few days after this discovery, he had his 2nd brain surgery. To capture how courageous Jake was, we would like to point out, he declined a stretcher into the O.R. He wanted to walk into his brain surgery himself, and as he walked into the intimidating O.R. and saw a dozen medical professionals, bright lighting, and odd-looking machines and tools, he got up on his operating table and said “Make Me Good Again”. He recovered well from 6-hour brain surgery. He then went back on multiple rounds of chemotherapy, plus an additional 33 rounds of radiation. He spent his summer of 2017 on intense medication and traveling back and forth to radiation, daily. Jake finished radiation in August 2017 and had his first MRI in November 2017. At this MRI, we were informed his brain tumor had returned, and other tumors had spread to multiple areas of his brain. Jake was placed on one last chemotherapy, in hopes to slow down the progression of this disease in his brain and hopefully allow us to spend quality time as a family. One month later, in December 2017 Jake told us the sides of his stomach hurt. We brought him in for an MRI and we were informed his cancer had spread down his spine. He now had multiple tumors in his brain, down his spine, in his lower back, and probably other areas. We chose to take him home, and keep him as comfortable as possible. We were told, Jake is going to die. We were given the option for him to pass away in the hospital, or take him home, under the care of our local hospice. 

During Jake's 4-year routine MRI scan, in April 2017 we found out his brain tumor had returned.

 

Same size, same location as 4 years prior.

We deployed Medical Marijuana in November 2017, and it was the most comforting medication Jake was on. It proved to be even more comforting than we ever would have imagined, especially as Jake’s disease progressed from November, until his final days in January 2018. We were sent home on hospice with 6 medications to treat nausea, vomiting, pain, agitation, & sleep. These medications were barely efficacious and would bring on unimaginable side effects. When Jake was on these medications, he still couldn’t eat without vomiting, he couldn’t drink water, he didn’t want to get out of his bed, he couldn’t sleep, and he was in pain. When we administered medical marijuana, Jake was a completely different person. Within 20 mins, he would stand up, he would eat, the vomiting would subside, his mood was energized, he slept and his agitation would disappear. For Jake’s first 4 weeks home on hospice, the only medication he was on, was marijuana. We were able to eliminate the 6 pharmaceuticals, which were given 2-3x daily and often times would make Jake feel worse. When Jake was on cannabis, he became euphoric, happy, hungry, energized, and painless. Marijuana wasn’t life-saving, but it was life-altering, for Jake and for us as a family. Cannabis kept Jake comfortable and allowed him to pass with dignity.

 

Jake passed away painless and peaceful, in his bed on January 21st, 2018. Jake started making an impact immediately. Two days after he passed, Jake donated his entire brain and spine to CHOP research, so that researchers can learn about his tumor type, and help find a cure for other children. This is crucial to pediatric brain cancer research because of how rare Jake's tumor is. There have only been a handful of patients with Jake's tumor type, so a lot needs to be learned. Without physically studying these aggressive tumors, progress just can't be made. Jake made the ultimate sacrifice, and we hope that because of his donation, doctors can formulate a better treatment plan so that other children won't have to suffer.

 

Tens of thousands of dollars were raised in Jake's memory for various pediatric cancer organizations.

 

These include funds that went directly to brain cancer research, to families who are in financial trouble due to childhood cancer, to families that need a vacation and a break from dealing with cancer and many more. Jake affected so many people's lives, and their hearts, that they felt to the need to take action. Although we would want nothing more than to have Jake physically here with us, the next best thing is for progress to be made, in his memory.   

 

Because of how loved he was (and is), his passing drew a lot of attention in our town, and state. We were very vocal about how amazing medical marijuana was for him, and we also shared suggested improvements, that would make the program even better. This information got the attention of New Jersey Governor, Phil Murphy. Two days after Jake’s passing, Governor Murphy signed an executive order that requires the Department of Health to examine all aspects of our state medical marijuana program and make suggestions on how to improve our program. Our family was invited to the Governor’s office to witness the signing. This caught much attention from the NJ/NY news media.  Additionally, a bill has been submitted to our state committee in Jake’s name. On July 2nd, 2019, Governor Phil Murphy signed the bill into law. 'Jake Honig's Compassionate Use Medical Cannabis Act' immediately impacted patients all across New Jersey. Among many advancements and improvements, one of the most impactful changes is that patients with a terminal illness can receive an unlimited amount of medical cannabis. Previously, patients such as Jake were only allowed 2oz, which oftentimes is not enough medicine to be kept comfortable. Medical marijuana will now be treated like any other medication these patients are on and is uncapped.  Other patients with life-altering conditions, can now receive double the amount, than the cap set previously. The cost is reduced, home delivery is now available and additional caretakers can obtain the medicine for patients.  Known as 'Jake Honig's Law' for short, this is one of the most patient-friendly and sustainable medical marijuana laws in the country. Articles and additional information about how this law impacts patients, can be found here

 

We are committed to sharing Jake’s story so that other patients can benefit. Unfortunately, the changes won’t benefit Jake, but Jake always put others first. There is no doubt in our minds that he is looking down at the wonderful progress being made on so many levels, and it brings a smile to his face and two thumbs up!

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