Pediatric Proton Foundation
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Jacob's Story

Childs name: Jacob
Parents name: Jim and Susan
Diagnosis: Spinal ewing's sarcoma t7 - t10 with an emergency laminectomy.
Diagnosis date: Aug. 7, 2007
Childs age: 2 yrs. old
Treatment summary: Recieved 25 rounds of proton radiation therapy after 4 rounds of chemotherapy and then in conjuction with chemotherapy for 3 rounds. Received a total of 14 rounds of chemotherapy.
Proton center: MD Anderson - Houston, TX
Oncologist: Dr. David Korngruth
Number of treatments: 25
Proton dates: 10/07 - 11/07
Insurance carriers: Optima
Learn about treatment: From Jacob's Grandpa who learned about proton just weeks before Jacob's diagnosis and then with intense research learning about the benefits.
Story: On July 31, 2007, the day care called stating that Jacob was complaining about his back when he got in from the playground. The day care staff said they would keep a close eye on him and call after his nap. They called and said after the nap, he was back to his normal self. That night, however, he cried out a few times, "Mommy, Owey", "Daddy, Owey". We rocked him back to sleep and gave him motrin which seemed to help. Parents don't think about tumors at this point, you think he probably fell and twisted something - after all, he is a toddler. Still, we took him to the pediatrician first thing in the morning. Nothing unusual was found. He rested that day and returned to himself. He went back to day care thurs. and was fine all day with no complaints. He stayed home with Dad on Friday, and went to the grand opening of a new bank branch on Sat. He was not quite himself, and he seemed a little stiff, later in the evening limping a bit on his right leg. Sunday, when he was taken out of the crib he couldn't stand up! We knew this needed immediate attention, and we were off to the local children’s hospital, The Children’s Hospital of the King’s Daughters emergency room. At first, the doctors believed his problem wasn’t serious. Yet, he remained paralyzed and when questioned, Jacob would point at his back and said, "owey right there". He was very convincing and articulate which led the doctors to the ultimate diagnosis. We will never forget those words "your son has a tumor on his spine." Our son? Are you sure? Little Jacob? "Yes, and he will need surgery either today or tomorrow to take the tumor off the spine and relieve pressure."

We are thankful to Dr. Toor, Dr. Werner, Dr. Phenix and Dr. Dilestro of CHKD for doing the surgery immediately and saving his spine. The tumor growth could have permanently paralyzed him. It was their collective quick thinking and action that helped save Jacob‘s ability to walk. The next several days are a blur of activity, surgery to install his hickman catheter, bone marrow aspiration, bone density test...and ultimately the verdict....ewing’s sarcoma/PNET. The good news no metastasis evident. Chemotherapy started immediately even though Jacob was still recovering from a major surgery, the doctors felt it was important to start the chemo as soon as possible (I know now due to cell spill from not getting all the tumor.)

In total, Jacob endured 14 rounds of intense chemotherapy. In addition, he was a patient at MD Anderson’s new proton treatment center in Houston, Texas where he received 25 proton beam treatments.  We could write a whole book on the experience of getting to the proton and having it covered by insurance, but in the end, Jacob got what he needed.  Now we have the pediatric proton foundation and a website dedicated to delivering information.

Approximately 6 months after proton, Jacob developed some scarring on his lungs (Radiation pneumonitis, or inflammation and scarring of the lungs.)  Also, at his t9 vertebrae there appeared to be a lesion (12/08), which was biospied and was proven to be dead bone.  We then took him to an orthopedic specialist and Jacob was fitted for a Boston brace due to sciliosis (24 degrees) and kyphosis (55 degrees).  They are trying to maintain his spine through growth.  At this point, they do feel he will eventually need hardware (spinal fusion) to help support his spine where the bone is permanently damaged.  We hope this surgery can wait until he is fully grown so he only has to have it once. 

Jacob has won the hearts of the staff, doctors and other patients no matter where he received treatment as evidenced by the letters written by those who came to love him. He keeps smiling. He keeps being a soul that has endured pain, yet hasn’t let it bring his spirit down.  We now hope and pray constantly for an appearance by our friend NED every three months.