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About Xander

Some information about Xander, his diagnosis and his treatment.

Who is Xander?
The name “Xander” means “mighty man”.

Xander ‘s name suits him well. He has been through more in his short life than most adults go through in a lifetime, and Xander maintained a “strong will” and “fought hard”. Xander is an “inspiration” to all those around him, he was able to maintain his smiles and laughter throughout his illness, and that kept everyone around him happy and positive. Since Xander was just a newborn, his greatest asset is his big beautiful smile. He brightens a room with his smile and makes everyone else around him join in. He loves to laugh, he can be very mischievous, and just enjoys life.

Xander loves books. Since a very early age, he loves to hear stories from Dr. Seuss and Winnie the Pooh, to name a few. He loves to look at the pictures in books and tell you his own little story.

Xander has had a fascination for buttons from a very early age. If there were buttons, he would push them. He was always turning on the TV, he loves the remote, and anything that has buttons. He is becoming very skilled with remote controlled vehicles with the levers and buttons. His latest endeavor is the computer. He is becoming quite a computer whiz. He has several games that he plays on the computer—Freddie Fish, Tonka Construction, Blues Clues and Candyland. He even has his own little mouse that is small enough to fit in the palm of his hand. He is very enthusiastic and excited about “playing” on the computer, and has spent 1-2 hours trying to figure out the games. He has printed his pictures for his mom and dad.

Xander also loves the movies. He is a big fan of Walt Disney movies, from Toy Story 1 & 2, to Monsters Inc. He also loves the Disney channel on TV and enjoys The Wiggles, Stanley, JoJo and his favorite – Rolie Pollie Olie.

Xander enjoys when his friends come to visit. He gets very excited and loves to show off. He likes to dance and just plain act silly.

Xander is a big fan of the Seattle Mariners. He shows some talent in his pitching abilities—who knows—one day he could be in the major leagues. Xander loves to play outside. It is very hard to get him back in the house. He loves to run around the yard, up and down the hills, throwing rocks and balls and swinging and sliding.

Xander’s favorite colors are green, yellow and orange. He loves to watch Baby Einstein (DVD’s) where he learns all about shapes, colors, animals and music. Xander loves to listen to music, dance and sing and march around the house, playing his musical instruments.

Xander is a big fan of “McDonald’s Kids Meal”—he loves his cheeseburger and french fries. His family feels that is how he was able to maintain his weight while going through chemo and radiation—when all else failed to inspire him to eat, a trip to McDonald’s usually did the trick.

Xander is very strong-willed. There is not much hope in changing his mind once he has an idea in his head. He will keep asking until he eventually gets his way.

Xander has a “special little friend” he calls “Baby” (his bedtime stuffed bear) that he has kept by his side since he was tiny. His little bear has given Xander great comfort in good and bad times and remains his companion at bedtime.

Xander is now a “big brother”. He calls his little brother Willem, “Baby”. He likes to give Willem hugs and kisses but does not like it when Willem plays with his toys. He is having a hard time learning that he has to share his things with his brother, but he seems to be getting better with it each day. Willem loves to watch his “big brother” and tries to follow him around in his walker. He wants to do everything that Xander is doing.

Xander is a very loveable little boy. He likes to cuddle with his mom and dad on the couch and watch movies. He loves to give big hugs and kisses. He is very affectionate. But, Xander also has a wild side, where he loves to jump and run and play fight just as most little boys. He loves to wrestle—he is always giggling and enjoying rough-housing with anyone who will join in his playtime.

Diagnosis
Atypical Teratoid / Rhabdoid Tumor, Right Frontal Temporal
COMMENT from the Surgical Pathology Final Report: The hispathological differential in this case includes primitive neuroectodermal tumor (PNET) and atypical teratoid / rhabdoid tumor (AT/RT). The somewhat pleomorphic nature of the tumor and presence of many large cells with generous amounts of eosinophilic cytoplasm favored AT/RT. The most compelling findings to establish the diagnosis of AT/RT were the immunohistochemical results, particularly strong EMA immunoreactivity of a subset of tumor cells. The rare GFAP-positive tumor cells were interpreted as foci of glial differentiation in a relatively undifferentiated primitive neuroectodermal tumor.

Treatment
The treatment plan is a modified version of either: CCG Study #: 99703, A Pilot Study of Intensive Chemotherapy with Peripheral Stem Cell Support for infants with Malignant Brain Tumors. A phase I/II Groupwide Study. With raditation therapy added after the first three rounds of chemotherapy. Or, Treatment of Atypical Teratoid/Rhabdoid Tumors of the Central Nervous System with Surgery, Intensive Chemotherapy, and 3-D Conformal Radiation, without the Methotrexate.

Here is an outline of the application of the treatment plan.

Three rounds of Induction Therapy as detailed below:

  • Day 0:
    • Cisplatin, 3.5mg/kg/day, IV over 6 hours
    • Vincristine, 0.05mg/kg, IV Bolus
    • Etoposide, 2.5mg/kg, IV over 1 hour
  • Day 1:
    • Cyclophosphamide, 60mg/kg, IV over 1 hour
    • Mesna, 13mg/kg, IV over 1 hour
    • Etoposide, 2.5mg/kg, IV over 1 hour
  • Day 2:
    • Cyclophosphamide, 60mg/kg, IV over 1 hour
    • Mesna, 13mg/kg, IV over 1 hour
    • Etoposide, 2.5mg/kg, IV over 1 hour
  • Days 3 until ANC recovered (repeat):
    • GCSF, 5mcg/kg/day, Subquetaneous Injection
  • Day 7:
    • Vincristine, 0.05mg/kg, IV Bolus
  • Day ? (when ANC > 1000/uL):
    • PBSC Harvest
  • Day 14:
    • Vincristine, 0.05mg/kg, IV Bolus

28 rounds of 3-D Conformal Radiation:

  • Weekday 1-28:
    • 5000 Cgy raditation, 2 fields.

Three rounds of Consolidation Therapy as detailed below:

  • Day 0:
    • Thiotepa, 10mg/kg, IV over 2 hours
    • Carboplatin, 17mg/kg, IV over 2 hours
  • Day 1:
    • Thiotepa, 10mg/kg, IV over 2 hours
    • Carboplatin, 17mg/kg, IV over 2 hours
  • Day 4:
    • PBSC Infusion, 11.4 Million Stem Cells
  • Days 5 until ANC recovered (repeat):
    • GCSF, 5mcg/kg/day, Subquetaneous Injection