(note: This post was originally created and published for The Bizzy Mamas.)
Bring your mind back to the moments in your life when everything changed. Maybe it was “I do”, birth, death, accomplishment or failure. Life changing moments are accompanied by the intensity of ecstasy, despair or surprise. I want to share two life changing moments and how they resulted in The Kolbe Fund. As Bizzy Mamas, most of us are driven by our skills and talents, financial success, and our individual passions. I am driven by one thing: a calling.
February 24, 2011 – Children’s Hospital of Philadelphia
My 4 year old son Max had been experiencing episodes of exhaustion, depression, weight gain, and muscle pain. After months of fruitless doctor visits and blood tests, his pediatrician prescribed an MRI of his brain. We arrived at the hospital for an early morning scan. Unfortunately, Max had a cold, and as a result, he couldn’t be sedated. The nurses decided to move forward and try to capture images. Not surprisingly, he was only able to stay still in the machine for 2 of the 80 required minutes.
I’m packing up our things after a seemingly endless wasted morning when a doctor walks in. He introduces himself as a neurosurgeon. He puts a picture of the inside of Max’s head on the computer screen. “Do you see this white spot? Right here?”
“This needs to come out,” he says.
A tumor. I can’t move. I can’t breathe. I can’t talk. I can’t hear. My heart has literally stopped. I look at Max and become alive again. Breathe in. Smile. My hand reaches out and falls on his messy head of hair. I hear my voice. “It’s okay, Bud.”
That was the starting point of a journey that tested my husband, Max and me in ways that I can’t explain. This time in our lives consisted of doctors’ appointments, scans, blood work and anxiety. Max’s health defined us as our friends, neighbors, and family launched into loving action. Meals were cooked. Our kids were watched. Our house flooded with gifts, cards, trinkets and well wishes. We were held and cared for. Love enveloped us.
Empowered by the support of our community I catapulted into action, and set out to find the best team of doctors.
Details of the diagnosis came over time*, but top surgeons in Philadelphia, Nashville, New York, and Baltimore consistently assured us of two things: 1) Although probably not cancerous, the tumor needed to be removed; 2) The surgery would have lasting effects that could seriously impact Max’s quality of life. The growth was located on his pituitary gland and was exerting pressure on his hypothalamus. This region of the body affects energy levels, body temperature, sleep, mood, hunger, thirst, metabolism, reproduction, growth, and more. The surgery itself would be complex, and as a result Max could suffer from extreme obesity and would require a lifetime of hormonal supplements.
Eventually, I received a recommendation from an online support group and was connected to Dr. Michael Scott at Boston Children’s Hospital. On June 14, almost 4 months after the growth was discovered, Aaron and I drove the six hours to Boston with Max and his two younger sisters. The five of us sat in the small waiting room outside of his office when out came a cheerful man with round spectacles and a bow tie. He stooped down in front of Max. “I’ve been waiting for you”.
After his examination of Max and the scans, Dr. Scott believed there was a small chance he could remove the growth without harming the delicate material surrounding it. “It’s a one in ten chance, and this might be the one.” We filled with hope.
July 5, 2011 – Boston Children’s Hospital
My husband and I sit with Max in a small curtained off area of the hospital. Dr. Scott arrives. “Okay, Max, we are ready to take you back. “
I gently explain to Max, “Only mom or dad can go back with you and stay until you fall asleep.”
Max has been mute all morning. He points to Aaron.
They walk away hand in hand. I am still. I am sitting quiet on a chair. My face is wet. Minutes pass. Aaron comes back. He’s sobbing. “Oh God, Katie!! Oh God!! OH GOD!” He grabs onto me. I close my eyes and say the prayer I have said countless times before, “Dear God, I will do anything if you make this right. Absolutely Anything. Anything. Anything. Dear God, make our boy well.”
Eight hours pass before we are led by a nurse to a small quiet room. Dr. Scott arrives. He is smiling. I am listening, but I’m exhausted and overwhelmed and afraid and I don’t know if my thinking mind is working.
“Mrs. Schnittman, are you okay?” says Dr. Scott.
“So….you’re telling me that you did it. That’s he’s the one in ten. He’s okay?”
“Yes. I think he’s going to be just fine.”
Aaron is smiling. We feel light.
As time passed we slowly merged onto the healthy path. Max had a recurrence in March 2013, and as a result we brought him to Boston where he underwent a relatively low risk second brain surgery. Doctor visits, MRIs and blood tests slowly become less frequent. We began to take on all of the normal challenges of family life.
Now, more than four years after the tumor was first discovered, doctors are impressed with Max’s progress. There is no doubt that we would be living a different reality if it weren’t for the support of our community and our ability to travel.
Despite our fears and sadness throughout Max’s ordeal, it has gifted my husband and me with remarkable perspective. I dare anyone to sit in the pediatric neurosurgery waiting room and not feel blessed. Your imagination delivers you to the burden of others, and your cross becomes bearable. Our hospital days are an indelible memory.
For almost a dozen years prior to Max’s diagnosis, I had been working as a Human Resources Consultant in the field of compensation. As an independent contractor, I worked from home and made my own hours. I was good at my job and very proud to be an equal financial contributor to our household. However, I became professionally immobilized. I was burdened with the memory of my pleas to the highest power, and an overwhelming sense of obligation to live a more purposeful life.
In April 2013, in response to the regrowth of Max’s tumor, our friends and community hosted a fundraiser with the purpose of covering our travel expenses. We were overwhelmed when we were presented with a check for $7,000. Feeling optimistic about Max’s prognosis, we used this money to start The Kolbe Fund.
Any child can become ill and often the best care is far from home. Hundreds of thousands of families travel for pediatric care every year because they desperately want to realize the miracle of modern pediatric medicine. When families cope with a crippling diagnosis, they must be empowered to seek out the best care, no matter what the cost. As a community we must ensure that every financially struggling family with the courage and strength to set on the journey to seek and receive the best care for their sick child is provided with the necessary support. Food, gas, and lodging aid for these families is surprisingly sparse. It is a problem that The Kolbe Fund aims to fix.
On October 28, 2013, “Jody”, a single mother of two from New York City found herself at The Children’s Hospital of Philadelphia. Her young daughter was receiving outpatient treatment for a rare blood cancer. The Ronald McDonald House was filled to capacity and Jody and her girls needed a place to stay. The Kolbe Fund provided two nights of hotel lodging. It was a privilege to help Jody as she embarked on the long journey of caring for her daughter. Eighteen months later, I can say that Jody was the first of more than 250 families that have relied on The Kolbe Fund for support.
I am proud that The Kolbe Fund has provided more than 660 nights of emergency hotel lodging. Do I like my job? Some days. Do I make money at my job? No. Am I good at my job? Maybe. Is it worth it? Ask Jody.
It’s a calling.
*It was first believed that Max had a craniopharyngioma – an uncommon noncancerous brain tumor. After a second surgery in March 2013, it was discovered that Max had an ACTH Pituitary Adenoma – a noncancerous pituitary tumor. This extremely rare tumor causes Cushing’s Disease. Max is currently followed by endocrinologists at the National Institutes of Health. He has been symptom free since March of 2013, but continues to have MRIs and bloodwork at 6 month intervals to monitor his health. Doctors are amazed at his progress.