Welcome to our CaringBridge website. We've created it to keep you updated about Jacob. Please begin by reading the introduction, My Story.
Please visit often to read the latest journal entries, and, if you choose, write us a note in our guestbook. We appreciate you taking time to check in on Jacob. Your support means the world to us!
On April 18, Jacob woke up in the the night with severe pains in his belly. We were afraid it was his appendix, so Matt took him to the emergency room. The doctors took x-rays, determined there was no acute emergency, and sent Jacob home. By Monday afternoon, he felt better.
For the following few weeks, Jacob would have severe stomach pain for a couple of days, and then return to normal. Our pediatrician ran 2 series of blood tests, which came back negative. On May 13, Dr. LeCours sent Jacob for a CT scan, which I'm sure will one day prove to be the thing that saved Jacob's life. It led to Jacob's diagnosis, despite his lack of symptoms.
On May 20, 2009, following a biopsy of a lymph node in his abdomen, Jacob was diagnosed with neuroblastoma, a rare form of childhood cancer. On Friday, May 22, a scan showed that the cancer had metastasized in his bones, which means that he is in stage 4 of the disease.
The standard protocol for patients with stage 4 neuroblastoma is a series of six 21-day chemotherapy cycles, interspersed with surgery and radiation, followed by a stem cell transplant, and then more chemotherapy. The intense protocol spans at least a year.
This is not a case in which we can realistically hope that Jacob will “get well soon.” The best case scenario is that he responds well enough to each treatment that he progresses through the clinical trial and follows the protocol to completion, including a 2 month stem cell transplant at Dana Farber in Boston. I am not pretending to comprehend what this means to our lives or how greatly Jacob will suffer. I am simply repeating what I know of the structure of the protocol so far. I know that the procedure will be devastating to Jacob's 8-year-old body. It must be, in order to kill the cancer.
As Jacob enters his 2nd round of chemo, he is strong and looks healthy. Had he not already lost his georgeous red hair (due to chemo), you would not know this witty, energetic, sparking boy is ill. He is currently pain free and accepting of the apheresis catheter in his chest, along with frequent visits to see the great Dr. Pearce at Albany Med. He struggled a bit with his 1st round of chemo, but he bounced back. He begins this journey in good physical condition, and in the best of hands, with an army of supporters behind him.
We are going to make sure that Jacob is cured of this cancer, and we are going to do this with your support. Thank you for reading this one brief chapter of Jacob's Story. There are countless pages yet unwritten.
Sep 9, 2011 4:32am
Last Friday afternoon Marissa sat at the island in my kitchen and we chatted breezily about the upcoming school year as the kids buzzed about and Grammy and Pa helped prep the house for that night’s football game. It was like so many other times in my kitchen, yet so very much different. We weren’t talking about the game or Marissa’s high school classes; she was telling me about her freshman “Social Entrepreneurship” class at college, and I was philosophizing on just what that curriculum might entail. “It’s How-to-Make-Friends 101, Mariss! How much are your parents paying for those three credits??” We laughed and I tried my best not to cry and to crack jokes and let this all grown up little girl know that I know that she is going to really be something in life, and that going to college is the next great step, beyond Vienna Court.
Mariss isn’t one for tears. She is sunshine and light and bright smiles and music. So when I felt my eyes getting damp I hugged her and told her I had to go get ready for the game. She smirked at my attempt to hide my emotions – not my forte – and she was off to her Next Big Thing.
The following morning, Marissa was first on my mind. I opened my phone to text her one last good luck as I shuffled to my car to retrieve Hannah from early morning volleyball practice. As if on cue, the Hermanns pulled into my driveway, offering me one more chance to say “You’ll be great, Mariss!” I hugged Joe and Donna without letting my mind wander into theirs – what a day this must be for them. I thrust myself through Marissa’s back seat window for one more squeeze, and I was fine, really. And then I backed up to waive them goodbye and that’s when I took in the whole picture – the Hermann’s pristine some-sort-of-luxury sedan packed to the roof with their girl’s everything.
It was her guitar, perched up there, the cherry on the sundae, that got me. How many times has she soothed us with that guitar? I hustled to my car and tried to compose myself without looking back. This was not my moment for a tearful goodbye; that belonged to the little family backing out of my driveway. But I’m not going to lie…I sat in my car and let out a little bit of sadness, mostly for myself, that I won’t have Marissa’s sunshine in my daily life anymore. I let myself selfishly scan through my own kids’ future events, missing Mariss in the forthcoming photographs. And then I took a deep breath and reminded myself that college is THE BEST and that I am truly, genuinely thrilled for her to be headed to Boston and beyond.
“This is the only way it should be,” I said out loud, as I resolutely turned the key in the ignition.
“Iiiii like big butts and I can’t deny and you other brothers can’t deny...when a girl walks in with an itty bitty waist and a round thing in your face…” Sir Mix-a-lot came blaring his anthem out of my car speakers.
I really do wish that I could be sentimental about a much more appropriate song. But I was already choked up and then whamo – pictures of my bald, emaciated boy wiggling around, belting out obscene butt lyrics, flooded my head and I was done for. I gave into it and listened to the whole damn song and bawled all the way to the high school.
By the time I reached Lakehill Road, I was more laugh-bawling than actually crying. I was being ridiculous, crying at “my anaconda don’t want none unless you got buns, hun…” What was wrong with me?? I wasn’t sad. I wasn’t wishing back time. I don’t want to go back to those days when Marissa spent hours entertaining my deflated family like it was her job. I couldn’t bear to see my healthy boy sick again, inappropriately dancing or not. Matt and I would be rejoicing if today we were headed off with Jacob to his college, because that would mean we’d made it. That will be the day, I thought. The song concluded, I wiped my eyes, steadied myself, and strode into the school to pick up my girl.
I keep going back to that moment, though. Being struck by the guitar, and then the “of course this song is on the radio” – what station still even plays it? My overly emotional reaction. It was A Moment in my life.
I’d love to reflect back on it and say it was closure. An end of a terrifying and tragic and eventually heartwarming time in my life. But it’s not. There’s no closure, no end to this harrowing tale, for it is all The Story of My Life.
It was, however, a transition. Dare I say it, the end of a chapter in this story?
It is difficult for me to write those words; I am compelled to erase them because of the jinx factor. I am knocking on wood, praying, and deep breathing right now.
There is no end, I know this. But whatever twists and turns there are still to come in our story’s plot, it’s clear that at this moment there is a transition taking place. The girls are off to college, Ani is starting kindergarten, my brother is having a baby. . . There is change in the air.
I like change.
In July, Jacob’s periodic scans were “damn good” according to Dr. Pearce. Damn good. This allows us to breathe easy for a while . . . to take in the moments . . . Double H Camp, a visit from Uncle Mike and Aunt Debbie, Grandpa Shell’s 80th birthday, the first day back to school. Jacob is in 5th grade at Stevens. On the first day of school, he ran off the bus to me, red hair sparkling despite the gray sky, all smiles, bursting out with, “I HAD SUCH A BLAST AT SCHOOL!” before he even reached the doorstep. He was jubilant, I tell you. He was life and energy and joy. He is life and energy and joy. He weighs 75 pounds, he has taken up golf and swimming, he is ball boy for the Spartans, he is running and playing and noisy and happy.
He is still dancing.
So. What am I doing writing on Caringbridge at 4 am? I have school tomorrow; my new 8th graders need my energy and I want to give it to them. But, like so many times I’ve written before, I just can’t sleep. Something is eating at me.
But this time, it’s excitement. I think I’m too excited to sleep.
A while ago, Sheryl Lauria approached Matt and me about setting up a charitable foundation. She said that she believed that the positive energy and the spirit of the SHELLSTRONG Stroll should continue, that it should become a tradition in this community, that we could continue to use the proceeds to benefit Albany Med and our community. She said that she knows that the people who worked on the stroll would do it again; that they all want to perpetuate the spirit and goodness that was that event. I’m telling you, when that woman looks at you with a gleam in her eye, you believe anything she says. You believe it’s all possible. You believe that you can make a difference. We said of course, yes, this is what we will do. This will be our way to give back. Yes, if you will help us, Sheryl. Yes!
And so we have joined forces with the powers who carried us through Jacob’s battle with cancer, my friends, our community.
And we are going to change our world.
I introduce to you the SHELLSTRONG Foundation, a not-for-profit organization formed to financially support The Melodies Center, the Double H Ranch, a BH-BL Scholarship, and local people in need. We are in the midst of planning an Outdoor Movie Night on September 17, a Wine and Beer Tasting on January 28, and the BeStrong Stroll on June 2. Mark your calendars, come have a great time while supporting kids, and check out our website for more info (and how to get involved!): http://www.shellstrongfoundation.org
Do I sound like a commercial? Good. Because I believe in this product I’m selling.
When Jacob was sick and everyone, everyone was so very generous and good to our family, I was continually overwhelmed by the response I would receive to my thank yous: “No, thank you for allowing us to do this for you.” We got that all the time. “No, thank you, Shells, for allowing us to help you.” That gracious response struck me every time.
I get it now. Finally. I can’t sleep because I am so revved at the very idea of helping other people. Of not being the focus, just being one of the many who step up and make a difference. Of giving back to those who carried us for so long. Thank you, I think. Thank you for giving me this opportunity to help you.
Marissa texted me this afternoon: “Just had Social Entrepreneurship! Thought of you…I really liked it. It was about changing the world one step at a time.”
I copied that one onto an index card and taped it next to my desk. “I thought of you...It was about changing the world one step at a time.”
Yes, a transition. Oh, I do love change.
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