Ezra's Histiocytosis Fund
Donation protected
I'm Jacob Hess, my wife's name is Katie, and we welcomed our first baby, a boy named Ezra, into our family on November 7, 2012. We moved with his grandpa to settle in Eugene in the spring of 2013 and enjoyed our first summer as a family together. I found a job tending bar and was looking for work in Computer Networking while Katie stayed at home and took Ezra to the library and swimming lessons.
Ezra was very happy and healthy and everything looked good to the doctors, except we had noticed a swollen, dark purple area on the top of his gums. The pediatricians told us this was normal with teething but to keep an eye on it. The teeth came in, but the area never got better; it only got worse.
One day I was checking this dark area, and Ezra's face looked a bit asymmetrical or lopsided. I gently felt his left sinus and noticed a large, hard mass under his eye to the left of his nose. In addition to this, Ezra's lymph nodes under his jaw were swollen and very hard.
We took him to the doctor immediately, and our life hasn't been the same since.
The doctor was extremely concerned after an X-ray clearly revealed a tumor. A biopsy was scheduled and samples were taken of Ezra's lymph nodes and the tumor. We didn't know what it was until the next Monday when we were told it was Langerhans Cell Histiocytosis (LCH), but we still didn't know how severe. Tuesday he had surgery again to implant a port into a major blood vessel so he could start chemo treatment immediately. Wednesday we went to Doernbecher Hospital in Portland to meet with a Pediatric Oncologist to discuss and plan his treatment and determine how badly the disease had progressed.
A CT scan showed that Ezra didn't have other tumors besides the one on his face and his lymph nodes, and the doctor described the typical treatment of LCH.
LCH affects fewer than 1 in 200,000 children and has no known (scientifically proven) cause. It acts like a cancer, but it is not strictly defined as such. It derives from an abundance of Langerhans Cells- immature white blood cells. It can affect just one site, or multiple sites, or multiple sites and systems, and it can recur throughout life.
LCH is also treated like a cancer, and Ezra has started a year-long series of chemotherapy and steroids, along with medications to mitigate the side effects of the chemotherapy drugs.
Ezra's CT scan showed the tumor had eroded some of his left maxilla (upper jaw bone), but not enough to change the shape of his eye socket. The steroids have already started to ease some of the swelling and the tumor has softened. Ezra needs weekly injections of Venblastine (a chemotherapy agent) and daily doses of Prednisone (a steroid). We found out recently that the weekly injections can't be done in Eugene because there are no chemo-qualified nurses here, so we will have to drive to Portland every week.
This is where we need help. As a young couple facing normal expenses like college, our move to Eugene, and our first baby, our savings have been tapped and my paycheck simply cannot cover it all. Every donation we get will help us pay weekly travel expenses to Portland for Ezra's shots and our other household bills. Katie, Ezra, and I greatly appreciate every dollar we receive, and we all look forward to the day that we can pay your generosity forward to others in need.
Ezra was very happy and healthy and everything looked good to the doctors, except we had noticed a swollen, dark purple area on the top of his gums. The pediatricians told us this was normal with teething but to keep an eye on it. The teeth came in, but the area never got better; it only got worse.
One day I was checking this dark area, and Ezra's face looked a bit asymmetrical or lopsided. I gently felt his left sinus and noticed a large, hard mass under his eye to the left of his nose. In addition to this, Ezra's lymph nodes under his jaw were swollen and very hard.
We took him to the doctor immediately, and our life hasn't been the same since.
The doctor was extremely concerned after an X-ray clearly revealed a tumor. A biopsy was scheduled and samples were taken of Ezra's lymph nodes and the tumor. We didn't know what it was until the next Monday when we were told it was Langerhans Cell Histiocytosis (LCH), but we still didn't know how severe. Tuesday he had surgery again to implant a port into a major blood vessel so he could start chemo treatment immediately. Wednesday we went to Doernbecher Hospital in Portland to meet with a Pediatric Oncologist to discuss and plan his treatment and determine how badly the disease had progressed.
A CT scan showed that Ezra didn't have other tumors besides the one on his face and his lymph nodes, and the doctor described the typical treatment of LCH.
LCH affects fewer than 1 in 200,000 children and has no known (scientifically proven) cause. It acts like a cancer, but it is not strictly defined as such. It derives from an abundance of Langerhans Cells- immature white blood cells. It can affect just one site, or multiple sites, or multiple sites and systems, and it can recur throughout life.
LCH is also treated like a cancer, and Ezra has started a year-long series of chemotherapy and steroids, along with medications to mitigate the side effects of the chemotherapy drugs.
Ezra's CT scan showed the tumor had eroded some of his left maxilla (upper jaw bone), but not enough to change the shape of his eye socket. The steroids have already started to ease some of the swelling and the tumor has softened. Ezra needs weekly injections of Venblastine (a chemotherapy agent) and daily doses of Prednisone (a steroid). We found out recently that the weekly injections can't be done in Eugene because there are no chemo-qualified nurses here, so we will have to drive to Portland every week.
This is where we need help. As a young couple facing normal expenses like college, our move to Eugene, and our first baby, our savings have been tapped and my paycheck simply cannot cover it all. Every donation we get will help us pay weekly travel expenses to Portland for Ezra's shots and our other household bills. Katie, Ezra, and I greatly appreciate every dollar we receive, and we all look forward to the day that we can pay your generosity forward to others in need.
Organizer
Jacob Hess
Organizer
Eugene, OR
