Tuesday, January 29, 2002

Decision Made

Kyla has decided to go with the San Francisco protocol after finding out that she does not qualify for the Burzynski treatment. She would need to have some tumor left in order to participate in his trial. So that option is still available if there is re-growth at some future time. So now she has the consent forms to sign and also a blood test to be drawn before she finds out if she qualifies.

Friday, January 25, 2002


Kyla visited Willamette Valley Cancer Center to be fitted for a mask (called simulation) which patients wear during the radiation treatment. She went ahead with this so that if she does decide to go this way, she will have that part over with. The technicians and Dr. Fryefield will now go over her file and make the best plan for the radiation. If she chooses this, then she should begin treatments in a week or so.

Thursday, January 24, 2002


We were planning on leaving this morning but Dr. Chang wants Kyla to have a scan which couldn't be scheduled until 4:00 p.m. It gave us a chance to wander around SF a bit more. We drove through Golden Gate Park, toured the Japanese Tea Gardens and hiked up the hill to see the Prayer Memorial. Not enough time in the day with all the driving but we had a nice time. After Kyla's scan we left San Francisco. RUSH HOUR!!!! Took us a couple of hours to get through that and we arrived back in Eugene around 2:00 a.m.

Kyla and Jed in the Japanese Tea Gardens

Wednesday, January 23, 2002

UCSF/Dr. Chang

Our appointment with Dr. Chang is for 2:30 so we had a little time to wander around San Francisco. We found our way to UCSF, went to the piers and had lunch. We looked at a submarine and naval ship used in WW2 and walked through Cannery Row but didn't have much time to spend before the appointment. We met with Dr. Chang and like her a lot. She explained everything very clearly and made Kyla feel like she is not just a statistic . She has a protocol that she is using now in which Kyla would have the standard radiation but would take Temodor (chemo) along with Acutane (which enhances the effects of chemo) along with the radiation for six weeks. After the six weeks are over, she would remain on the chemo and Acutane for a year but the chemo would drop down to 5 days a month. So now Kyla has to sort out what treatment she would like to try. Lots of decisions to make. Footnote: Jed drives like a pro (aka as "maniac") around SF in our new car....shoulda been a cabbie, Jed!

Tuesday, January 22, 2002

San Francisco

Kyla, Jed, Dave and I arrive in San Francisco after a LONG drive. We check in to the hotel recommended by the hospital....kind of a scary neighborhood. After deciding we didn't want to park in the open garages where some kids were hanging out, we steered clear of the bag man sleeping on the sidewalk and parked as close to the office as we could. We then drove around and tried to find something to eat and got lost. But we did find an In and Out and grabbed something quick. We also tried the famous Krispy Kremes doughnuts that we have heard about. They were good but I don't think I would drive to SF just to buy them as a UO student did.

Friday, January 18, 2002

OHSU Visit

Kyla, Jed, Dave and I met with Dr. Neuwelt today to find out what types of treatments he would suggest. We all left with a feeling that this was not the place that Kyla should be treated. He was more interested in what her insurance would cover than giving us options and his attitude was not very positive. We also have an appointment in San Francisco with Dr. Susan Chang on the 23rd.

Staple Removal

Dr. Kokkino removed the staples today. The scar is healing nicely. Dr. Kokkino takes Kyla off of the Dilantin because of an allergic reaction. She is now on Tegratol for seizures. We have made an appointment with Dr. Neuwelt at OHSU for a second opinion for tomorrow.

Monday, January 7, 2002

Going Home

Kyla goes home today. She is doing well. Jed will stay with her in the mornings and Vonda will be with her in the afternoons while she is recuperating. Emma will be going back home from Vonda and Dave's today. Now the search is on for the best treatment options. There is the standard radiation then chemo and also have been looking into UCSF's clinical trials and the Antineoplaston treatments at the Burzynski Clinic in Houston, TX.

Friday, January 4, 2002

Day After

Kyla is doing great. She is awake and no signs of swelling or bruising which sometimes happens with a craniotomy. She is able to stay awake for much longer periods and talk with her visitors. She will have an MRI today to determine if the entire visible tumor was removed. Dr. Kokkino broke the bad news that the preliminary findings are the tumor is a Glioblastoma Multiforme, which is the most aggressive form. A second opinion will be done by another pathologist at OHSU to confirm but the same opinion was given before surgery by one of the top tumor specialists in the country, Dr. Jerome Posner, who is at Sloan Kettering Memorial Cancer Center in New York. He happens to be the brother of my boss. I am beginning to see how small a world this really is and the connections that we all have. My boss is famous for his research on the brain, his brother just happens to be famous for his brain tumor work. Wow!

They will be moving her out of ICU to a regular room on the neurosurgery floor tonight. We love you Kyla.

Thursday, January 3, 2002

Surgery Day

7:00 a.m.
Kyla is at the hospital for surgery today. It's going to be a long day of waiting.

10:30 a.m.
Update: Surgery went well. Dr. Kokkino successfully removed the tumor. It will take a few days to find out the results. Kyla is looking good and she can speak. There was some concern that she may lose the ability to speak and some short-term memory loss for a while. We won't know the extent of malignancy or what kind of follow-up treatment she'll need until the pathology report is back.

Tuesday, January 1, 2002

Game Day

Kyla, Jed and Emma spend the day with Jill, Kelli, Brian, Gram and Grandad at Dave and Vonda's watching the game and having dinner. Of course Wade crashed the party.......good thing too. Wade took the picture for us....Thanks Wade!