Posted: October 30, 2014
The last time we saw “normal,” it was the morning of July 12, 2011, and we had to get the kids ready for Camp and go about our day. Jake came in to wish his soon to be step-father a Happy Birthday, and gave him his signature HUGGY! (He was awarded “Best Hugs” at camp the year before – He made peoples’ days all the time like that…Walked up, introduced himself, and gave them hugs and noogies. That’s how he rolled.) Five minutes later, he was kneeling on the floor and said, “What’s that SMELL??” We checked for something blowing in under the door, but nothing. Five minutes more, his head hurt, and he threw up. Five minutes after that, he was unconscious and non-responsive. Completely out of the blue, he had had a seizure. Within 30 minutes of that hug, we had Jake in the local ER where he had a CT scan. We were told that it showed a brain bleed in his right Temporal Lobe. They immediately transferred us to Lehigh Valley Hospital in Allentown, PA, where he had an MRI and a spinal tap.The MRI showed that there was no bleed, but that he either had a mass or swelling in his brain. They ruled out several viruses, but we still had no answers. We were sent to Children’s Hospital of Philadelphia (CHOP) for a second opinion.
On July 22, he had a brain biopsy during which they expected to remove a 5 cm sample from the most affected area. They ended up removing more than that, based on what they saw once they were in. On July 27, we met with doctors to receive the final pathology results and diagnosis. In all, it was two weeks of intensive care with teams of doctors, and a diagnosis eluding us, while he lay sedated with a breathing tube down his throat. As the sedatives would wear off, it took five adults to hold him down to keep him from removing the breathing tube until they re-administered enough drugs to knock him out. With every day a new strange hypothesis fell apart, before the craniotomy revealed a vigorously active brain tumor called Gliomatosis Cerebri concentrated somewhat around his right temporal lobe, branching out through the right side of his brain and down his spine. Medical science deems this to have a very low cure rate. This all happened just before and during a long-planned family vacation to Ocean City, New Jersey, which we almost canceled entirely. In the end, though, the good times in the sun on the beach, and basking in the lights and sounds of the boardwalk at night became a very special sanctuary for our spirits while we began to wrap our heads around this new reality, and the lasting roasted marshmallow memories we’ll always cherish.
When asked what he wanted his nickname to be on the support bracelets, he said Jake “The Hero” Grecco — A name he richly deserves. The medical team predicted we would have six months to a year left with Jake but one year later Jake was still fighting the fight with the strength of a Super Hero. Jacob’s treatment began with a 42-day course of oral chemotherapy (Temodar) and then 7-weeks of radiation therapy to his brain and spine, 5-days a week through September and October 2011. In December, he began IV chemotherapy every two weeks, which discontinued in June of 2012. Jacob had several MRIs throughout this journey. Between the first, around the time of diagnosis, and the second, a few weeks into radiation, the tumors and lesions on his spine were advancing. Between then and late December, having begun chemo, they were still advancing. His MRIs in March, which were moved up because pain in his back and legs indicated progression of spinal lesions, were stable. His MRIs in April had somewhat ambiguous but basically stable results. And yet, two weeks later, although the MRI and subsequent CT scan showed very little visible signs of fluid buildup, the pressure inside his cerebral ventricles had become so great that he began to suffer agonizing and prolonged headaches and vomiting. So while we figured on a long day of chemo in the Day Hospital, we actually spent 3-days in the Pediatric Intensive Care Unit while he underwent his second brain surgery to place a VP shunt to relieve the pressure. He endured all of this without complaint (mostly) – Feed him a fistful of meds three times a day, he’d belt them down no problem. Stick a needle in his chest, he took it. Cut a hole in his head, he was up and about in no time. Tell him he’s got to eat the non-marshmallow part of the Lucky Charms, you had a fight on your hands!
Clinically, Jacob declined rapidly in the two months after his shunt surgery. Each fighter does this in his own ring; and we had a fighter with the world’s greatest heart, who grinned when others might cry, and hugged when others might shy away…That incredible toughness he came by so naturally. So it was perfectly rational for us to expect him to chew up his VP shunt surgery and spit it out, like he’d done with the intubation, the craniotomy, the Port-a-Cath placement, the radiation, and the chemo. But in light of accelerating pain and weakness and another MRI in June indicating a marked progression of the disease, Jacob was placed on Hospice Care, with a focus on Palliative Treatment – Just trying to make him as comfortable as possible for as long as possible.
July 2012 marked a year from when Jacob’s tumor was discovered and our amazing little man started his FIGHT. In light of Jake’s rapidly deteriorating condition we researched alternative options (as we had been doing all along with natural supplements and therapies), and found a treatment in Germany that we decided to try. Jake was to receive loco-regional deep hyperthermia to the tumor areas (his brain and spine), and high dose infusions of Vitamin C, as well as daily doses of frankincense, a-lipoic acid, selenium and Vitamin D.
We didn’t know how this would work for Jacob but it was the most promising option we had. Jacob’s disease was progressing, his abilities were declining and we were willing to do whatever we could that we felt had promise, so we left for Germany on July 16th. After a week in Germany Jacob showed some improvement and we were filled with hope that it was a small indicator of the therapy’s potential for improving his overall prognosis, but a few days later, Jacob began declining.
We were transferred from the clinic that was treating him to a children’s hospital, who told us that we were at the end of our journey. We desperately tried to get him home, and everyone back home moved heaven and earth to make that happen. We raised enough money within 24 hours to get him home on an emergency medical flight and were scheduled to leave the hospital by ambulance at 7:30 am on August 1st. Jacob was struggling and it became evident that we were very close to the end. That night his mom gave him a choice – to take the flight home to NJ; or grow his own wings and let his spirit soar. Jacob made his choice and passed away at 3:26 am that same day.
He had such a loving spirit and hundreds of people behind him…loving him, praying for him, supporting his fight. We were all in the position of facing this…Thing: Aware of its track record, we fought like Hell for more Tomorrows, while we nursed and cherished every ounce of joy from the Holy Gift of Todays. We struggled to find the faith to transcend the acceptance of what little medical science understands, while relying on a wonderful team of medical professionals for the amazing care they provide. At the center of all this was an incredibly tough, sweet, and funny 8-year-old teaching us all what it is to smile in the face of a fierce opponent. But there was also an 8-year-old kid who wouldn’t tell you that he didn’t understand the cards he was dealt, and didn’t really know how to change them. Behind the mask, under the cape, he was scared and confused. Barely out of sedation after the shunt surgery, he said, “Why ME?? I never wanted for this to happen!” He was aggravated that this stupid thing wouldn’t just shut up and leave him alone, and frankly, didn’t seem to know how to hope and believe that it COULD change. It’s a surprisingly difficult spiritual insight to instill in a little guy (to say nothing of ourselves), and we struggled anew every day to find the right words to light his hope.
Gliomatosis Cerebri is one of many childhood cancers with an extremely low cure rate. This disease was more than the best medical help on earth could handle. But somehow, Jake himself managed to handle it, spending the last 53 weeks of his life playing, learning, laughing, loving, and fighting, without once showing any fear whatsoever. Through the outpouring of kindness and support shown by everyone from teachers and school administrators, to parking valets, nurses, McDonald’s staff, and complete strangers, our incredibly willful and affectionate Jacob came to touch more hearts, minds, and lives than most people many times his age ever do. A truly remarkable person might hope in a full lifetime to have the effect Jake had in his all-too-short 100 months on Earth. He brought more comfort to those scrambling to help him than any of us could ever match or repay.
He earned his Angel Wings on August 1, 2012 in Germany, never surrendering, but finally abandoning this limited body to fly free, and become a feisty, though sorely missed beacon of hope to all of us who know and love him; to fight on in his honor. To bring awareness to the underfunded childhood cancers ravaging our children. To bring what comfort we can to the hundreds of thousands of families deep in the fight right now. And to work toward the day that this insidious monster of a disease can come to be healed.
Though he was taken from our arms, in our hearts, he is the inextinguishable light we wish to shine back into this world.
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