Kary was still 3 years old, the week before Christmas of 1999. He was complaining of headaches. On Monday before Christmas, he woke up with a headache and vomited.
Dad took him to his Pediatrician who told them he had a sinus and ear infection, prescribed some antibiotics.
Thursday night at bedtime he complained of another headache and vomited. Mom took him into the emergency room, and they told her that he had a migraine, to take some Tylenol and monitor him.
Mom and Dad knew something was not right here. Dad remembered these symptoms as being potential for brain tumor and Mom stayed up until 3AM into Friday morning of Christmas Eve researching the Web for diagnosis. It kept coming back with brain tumor.
We kind of wished that away and were in denial. Christmas Eve came and Kary had a great day. But that night while his brothers were opening a ton of gifts at one of their Grandma’s houses, Kary was lethargic and his eyes began to cross — we were again very concerned. We called the hospital in South Bend again and they told us that the eye crossing could be part of the migraine.
Christmas Day came and again, Kary had a great day almost back to normal until around 2PM. He became very lethargic and zoned out for about an hour on his new Blues Clues “Thinking Chair”. Dad got on the computer and found the nearest Children’s Hospital at University of Chicago.
We had one more Grandma’s house to go to and left there at 5PM to head out for Chicago about 2 hours away. They examined him about 8PM and did a CAT Scan about 10PM. About 2AM a team of doctors and a pastor came into our 8′ by 8′ examination room in the ER. They told us that Kary had a brain tumor in the center of his brain.
They did not how serious that it was but that they would need to keep him in the hospital for further examination — This was every parent’s nightmare come true and the beginning of the battle with cancer for our 3 year, 9 month old child, Kary Young.
We were in the hospital for over 2 weeks. Kary had a biopsy done and a ventriculostomy of the 3rd ventricle to relieve his hydrocephalus (water on the brain). We had people nonstop for this period come to pray for Kary and spent our Y2K in the hospital at our child’s bedside.
The following is a summary of his treatments over the past 2 ½ years.
Pineoblastoma – form of PNET (primary neuro-ectodermal tumors) similar to medulloblastoma found in the pineal region of the brain. Caner of the CSF, central spinal fluid.
- Only 10-20 cases per year mostly found in small children
- Diagnosed at Univ of Chic Children’s hosp and received 3rd ventriculostomy and biopsy – 12-27-99
- Treated at Children’s Memorial Hosp of Northwestern in Chicago, IL by Stu Goldman and Tad Tomita
Treatments were supposed to be either immediate resection followed by chemo, high-dose chemo / stem cell rescue (transplant) and radiation or pre-surgery chemo, followed by resection, hi-dose chemo / stem cell rescue (transplant) followed by radiation and then focal point gamma knife radiation.
Consulted with other facilities and doctors via email and telephone at:
- Johns Hopkins
- Children’s Hosp of Phila. (CHOP)
- Beth Israel of NYC
- MD Anderson
- St. Jude’s Children’s
- Duke Children’s
- Cytoxan, 2 cycles
- Carboplatin / VP-16, 3 cycles
- June 2000 surgery scheduled to resect and debulk the primary tumor found major spreading of cancer throughout brain and spine
- 4000 rads of full cranial and spinal radiation, children below the age of 6 likely to have learning disabilities from radiating the brain, under the age of 3 will cause severe handicap. Aug 2000
- MRI showed still tumor metastasis, Aug 2000
- alternative treatments in Mexico, Sep 2000
- MRI showed metastasis cleared, Nov 2000
- started temozolomide (temodar), oral chemo at home Dec 2000
- growth seen June 2001 started CPT-11 July 2001
- growth seen Nov 2001 started intrathecal topotecan (through Amaya reservoir – port into brain) and oral thalomide
- growth seen through Feb 2002 started antineoplastin at Dr. Burzynski’s Clinic Mar 2002
- May 2002 – growth of up to 100% during antineoplastin treatment and problems with swelling in the brain —
- Time for God to deliver his Miracle!
And whatsoever ye shall ask in my name, that will I do, that the Father may be glorified in the Son, If ye shall ask any thing in my name I will do it.
– John 14: 13-14