2-6-94...Mommy and Curt have another good night. Curt eats a big meal then barfed it all up. He didn't have any problems with lunch and dinner. Continues to be progressively more active and more alert. Still if you ask him what he had for lunch 20 minutes after he had it, he can't remember. Dr. Kim says he probably still has some swelling in that area and not to worry about it. Dad took a walk down 5th Avenue with Krissy's camera and had a big time. Dad called Sonya and she said Curt was the talk all around Sunnyside and everyone is ecstatic to get news of how successful the operation was.
2-7-94...Curt continues to improve today. Mommy talks Dr. Abbot into releasing Curt from the hospital and complete his NY stay at the Ronald McDonald house. He said the Tumor Board meets on Wed. morning and we will meet with him wed. afternoon. Mommy asked Dr. Allen if it definitely was malignant and he said 'no', the pathologist added special stains to Curt's tissue samples and he said the tumor is benign. At 11:30 a.m. we get cleared to leave the hospital but we end up waiting till 5 till the Dr.'s get out of surgery to write a prescription. We get the RX, get a taxi, go to RM House and have some hot dogs. Dad calls Mrs. Bailey and Grandpa Stevie; mommy talks to Grandma Stevie.
a mis-diagnosis...after all these months...you don't know whether to hit someone or hug them...you wonder how such a mistake could be made...we found out later, it's very common. Even NYU changed the non-malignant status to malignant... Ependymoma-astrocytoma...foreign words...scribbles and scratches so easily penciled in, in the place glioblastoma was formerly etched. Learning to mistrust all over again. The game continues....and Curt is the pawn...
...2-8-94...Snow! We planned to take a bus tour but it is snowing pretty hard so we decide to play it safe and remain at the RMH. Mommy calls the US Air agent and schedules us to fly out of LaGuardia on Thurs. at 12:30 P.M. and arrive in Wichita at approx. 4-4:30 P.M. We take the bus up to 86th St., walked over to 2nd Avenue, and then took our time walking back to RMH stopping in various stores along the way.
2-9-94...Weather is really nasty, cold, and icy. We cannot reach anyone at Dr. Allen's office so we take the bus and head for the NYU Med. Center. Curt finally gets some mail from Sunnyside and Grandma Hubbard. Stephanie Wolff, social worker, sets up a meeting with Dr. Allen at 1:45. Mommy and dad were hoping the doctor would say the tumor was benign. He said it was cancerous however. We were disappointed but actually Curt is very fortunate.
-ependymoma
-surgery removes all of it
-classified low grade
-likelihood of spreading to other parts of body less than 10%
-recommends controversial treatment which is no further treatment
-eight other children being treated in this manner (three have had re-growth with second surgeries performed to remove new growth
-Ependymoma is a low-grade glioma
-Curt needs MRI of spine to ascertain there are no tumors present
-follow-up with MRI in 3 months, then 4 month intervals
-Dr. Allen calls Dr. Rosen who is not in but will call back
-we return to RMH and start making calls with the good news
and this was his last notation in the journal....there are notes jotted by myself...it was FAR from being over...
