Truly Inspiring: Jake’s Story

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 stepfather a Happy Birthday, and give him his signature HUGGY! (He was awarded “Best Hugs” at camp the year before – He makes peoples’ day all the time like that… Walks up, introduces himself and gives them hugs and noogies. That’s how he rolls.)

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, 2011 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, 2011  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 and 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, NJ, 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” – a name he richly deserves.

The medical team predicted we would have six months to a year left with Jake, but here we are nearly 10 months later, and Jake is 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 seven weeks of radiation therapy to his brain and spine, five days a week through September and October 2011. In December, he began IV chemotherapy every two weeks, which he will continue to receive indefinitely.

Jacob has 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. He had his latest spine MRI on April 11, 2012 and a brain MRI on April 13, 2012, this time, with 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 three days in the Pediatric Intensive Care Unit while he underwent his second brain surgery to place a VP Shunt to relieve the pressure.

He has endured all of this without complaint (mostly) – feed him a fistful of meds three times a day, he belts them down no problem. Stick a needle in his chest, he takes it. Cut a hole in his head, he’s up and about in no time. Tell him he’s got to eat the non-marshmallow part of the Lucky Charms, you’ve got a fight on your hands!

Clinically, Jacob is doing extremely well, better than his doctors expected. He is very active, goes to school, takes karate and participates in many activities. Each fighter does this in his own ring; and we’ve got a fighter with the world’s greatest heart, who grins when others might cry, and hugs when others might shy away – that’s due to the incredible toughness that he comes by so naturally. So it is perfectly rational for us to expect him to chew up his VP Shunt surgery and spit it out like he’s done with the intubation, craniotomy, Port-a-Cath placement, radiation and chemo. He has such a loving spirit and he has hundreds of people behind him…loving him, praying for him, supporting his fight. We are all in the position of facing this… Thing. Aware of its track record, we fight like Hell for more Tomorrows, while we nurse and cherish every ounce of joy from the Holy gift of Todays. We struggle 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 is 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’s also an 8-year-old kid here who won’t tell you that he doesn’t understand the cards he’s been dealt and doesn’t really know how to change them. Behind the mask, under the cape, he’s scared and confused. Barely out of sedation after the shunt surgery, he said, “Why ME?? I never wanted for this to happen!” He’s aggravated that this stupid thing won’t just shut up and leave him alone, and frankly, doesn’t seem to know how to hope and believe this thing CAN change…and WILL change. It’s a surprisingly difficult spiritual insight to instill in a little guy (to say nothing of ourselves), and we struggle anew every day to find the right words to light his hope.

So if you will, pray for his strength, and his healing, but please send your light also for his Hope; his Desire – his Belief in Transformation. Because the greatest doctors and nurses in the world (and trust me; we’ve got them…) can deliver the same treatment a thousand times with needles and scalpels and machines that go, ‘BING!’; But true healing comes from within – From the fighter who Hopes, and Believes, and KNOWS he can be well again.

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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5 Responses to Truly Inspiring: Jake’s Story

  1. Pauline Grady says:

    beautiful blog entry…..pray for you guys often as I do our Sam to fight this monster…..god bless you guys….xoxoxo

  2. This brave little boy and his family will be in my thoughts and prayers. Its so easy to lose sight of what is important in life, and sometimes life’s small, everyday challenges can seem overwhelming. This really puts things in perspective though…
    Sending all my love, hope always survives

  3. Dragon says:

    You hang in there little buddy and you fight hard. You’ve got a Dragon over in a little corner in PA that has read your story and wants you to know that prayers and lots of healing and positive energy are going to come your way. If anyone deserves them, it’s a HERO like you!

  4. Muireann P says:

    Wow, Jake you are truly an inspiration to everyone! I rode on the 4k For Cancer with your pedal pal Chey last year. It’s people like you who help us get over those mountains and keep peddling through the 100 degree heat. Many adults can not figure out how to stop letting this disease control their lives but you on the other hand have told this disease that you aren’t done fighting! You really are a HERO! You will be in my prayers every night. As for your family, I know what you are going through is tough. I’m facing similar difficulties within my own family. You are all so strong and are role models for any family who is battling cancer. I always say “If you’re strong I’m strong.” KEEP FIGHTING!!!

  5. Richa Stevens says:

    Hi Jake,
    You are an incredible hero. I am praying for courage, strength, hope and healing. You are an inspiration to all of us. I work with adults that have cancer and I can tell you that you are fighting as hard and as brave as any adult. Hang in there little friend and thanks for showing me how to live life inspite of a huge challenge. Chaplain Richa Steven, Kettering Medical Center

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