Update

Last Friday the nurse from Dr. Chang's office called and said to plan on the week of May 13th to come to San Francisco for the biopsy. So on Monday Kyla had another MRI and federal expressed it to Chang to make sure that nothing had changed since her last one the end of March. She will also have her blood work done here and a report faxed to Dr. Chang in the next week or so. The human subjects committee in SF are meeting on May 10th to approve the protocol for the next 3 patients (Kyla is one of them) so unless something unexpected happens.......she will go then. We will try to update if anything changes.

Kyla and Jed after much hard work finished filling the raised beds with garden soil so now they are ready to plant. Of course nothing is ever simple when Jed is all set to work.....first after trying to move the pickup and trailer closer to the beds, the pickup just spun out in the grass because of the weight, bald tires and wet grass. So they fill up the wheelbarrow with a huge mound of soil and Jed picks it up to push and the tire (which has become flat) falls off the rim. So he unhooks the trailer, hops in the pickup and off he goes to borrow Grandad and Gram's wheelbarrow and another shovel. But the project is finished for now....still have planting and walkways to finish......some day!

Uncle Mike's Birthday Party

Kyla, Jed and Emma attend a family birthday party for Uncle Mike who is how old? (er we won't tell but you should have seen the smoke coming from that cake!). Delpha and Max fixed a great dinner and Emma had lots of fun playing with her cousins, Greyson and Braedyn....especially chasing down poor Braedyn trying to kiss him. As she tells it, "He likes me!"

A good evening with great family.

Lunch With Aunt Judy and Uncle Don

Aunt Judy and Uncle Don took Kyla, Jed, Emma, Brian and cousins Wayne and Kate to lunch at Marie Calendars. Kyla really enjoyed seeing some of her family from Baker. She and Brian plan on a trip this summer to Baker after she recuperates from surgery to visit.

Emma took Kate around wearing her out. Thank you to Judy, Don, Wayne and Kate for brightening up Kyla's day.

Chef Wade BBQ's with Assistance (in theory) from Future Queen of England, Jill

Chef Wade on the job

Wade BBQ'd dinner for the whole family while Queen Jill lay on the couch as her slaves, Kelli and Erica, fanned her with a giant palm leaf and fed her grapes. Wade passes the test......great chicken and sausages! Kyla and Jed brought a yummy macaroni salad and rice crispy treats. Brian brought a pumpkin pie and rolls (we know you slaved over that pie, Brian....especially the label with Safeway on it). Wade's brother, Matt and his wife, Jo, were there along with Erica, Kelli's friend. Actually to Jill's credit, she helped pay for the food and she marinated the chicken. We are just teasing you Jill!

Emma wore Matt out playing ball. Matt is soon to become a daddy so he is getting a good taste of what life will become (see the pictures on the photo album page.) The dinner was a hit and now we expect more! Thank you Wade and Jill!

Joe Reports on Afternoon with Emma David

Sheri and I had a great afternoon with Emma recently. After taking her mother to lunch at El Torrero's the three of us went up the McKenzie River to stop at Leaburg Lake to feed the ducks. Since all we could find were geese we fed them lots of cracked corn that we had purchased at the Walterville Feed Store. It was lots of fun and Sheri and I learned how fast a 2 year old can move when there is water to get into! We then went over and visited the ODF&W fish hatchery and fed some "big fish" that Emma said her Grampa would like to catch!

We return home to take care of nap time......and after Joe had his nap (nobody else did!) it was time to return home. Several days later I have recovered from sore muscles and crossed eyes from trying to keep up with a 2 year old. It was a lot of fun for Sheri and Joe both!

Thank you Emma!

PS..... Did you know when you spell check for Grampa it gives you a choice of 'Grump' and 'Grumpier'!

Note on a Napkin and a new Dorothy

Dave and I got home a little late after going to Costco to pick up some things for Kyla and Jed. A strange little note written on a napkin on the counter said "We came....picked up some fish....gobbled at the turkeys......we left". Made us smile...thanks Jed!

Emma now has "Dorothy #4", her birthday goldfish. For some reason the first 3 didn't make it or "Dorothy is asleep" as Emma thinks. Kris and Mitch came on Sunday evening to pick up the crib from Kyla and Jed and their daughter, another Emma, went upstairs to Emmy's room with Emmy and came back down and reported that Dorothy was not moving very much but she fed her anyway. Don't know if Dorothy ate much that night, but it was nice of Emma to feed her. So now the new Dorothy is supposed to be a much hardier fish......we hope.

Building Raised Beds/Tentative Surgery Date

This weekend Kyla finally got her raised beds built. After Dave and Jed went on a wild goose chase to locate the trailer they arrived back at the house around 5:00. Brian, Jed, Dave and Emma began the work.

Emmy helping daddy

So a few were put together Saturday evening. Sunday was spent buying new drill bits because bits were getting broke off in the wood, none of the three cordless drills were powerful enough to keep going before running out of power and the electric drill kept bogging down. But they did get finished putting them together and they look great!. Now comes the finish work. Next weekend we hope to haul the soil and make the walkways between the beds. Then the planting!

Almost finished beds

The nurse from San Francisco called and basically let us know that the protocol had expired and was still in the renewal process and they hoped to have it all ready to go again by the week of May 13th. So the tentative plan is to go that week but it isn't firm at this point. Very frustrating for everyone. Hopefully we will hear soon.

Kyla is feeling good and trying to enjoy the sunshine. Keep up the positive messages....they really mean a lot to her.

Hair Cut and Joe and Sheri Take On Emma

Wednesday night found me buzzing Jed's hair. I tried to warn him that I am NOT a beautician but he insists. So out come the clippers and after a few minor gouges, his hair is done! Kyla, Jed and Emma stay for spaghetti and Jed secretly cries in a corner about his hair. I guess maybe this haircut doesn't qualify for the sexy messy look.

Today Joe and Sheri Rose decide to spend a fun relaxing afternoon with Emma. First they arrive at 11:30 to take Kyla and Emma to lunch at Torero's. You would think that would begin to get them worried about how much chasing they might have to do, but the blinders were on! They take her to feed the ducks. I am not sure who came away more tired...Joe, Sheri or the ducks. After of course plying Emma with M&M's and I am sure, ice cream, Sheri spent most of her time chasing after Emmy taking things out of her hands as fast as she could pick them up. Then up the stairs and down they came with straw hats on and a couple of calls to Grandad at work to say "Howdy, Howdy". Actually I think Joe needed a rest so he had to get on the phone with Dave. I heard that a couple of times Sheri's eyes started to close and Joe, in a panic, kept shaking her to make sure she didn't leave him to run a losing race with a 2 year old. So after a nice "relaxing" afternoon of songs, running and I am sure "I can do it myself" from Emma, Sheri brought her home. Joe had to take a nap so he stayed home. I think that maybe they want two or three kids of their own now.

BUT Emma loved it and had so much fun.

Thanks Joe and Sheri.

Ocean, Relaxation and Cosby

Kyla, Jed and Emma are treated to a weekend at the beach house in Waldport by Aunt Barb and Uncle Rick. Barb and I made up a basket of goodies to go to the coast with...lots of chocolate, movie certificates, money for dinner, books, fun stuff like clay and paint with water books for Emmy, popcorn and other stuff. Emma was jumping with excitement because she wants to "throw sand at mommy". They took her to see the aquarium and watched a couple of movies and also had dinner at La Serre in Yachats. It rained most of the day Saturday but Sunday the sun came out so they could go down on the beach for a while. Kyla brought home a cool shell for me.

My treasure holding a treasure she brought to me

Friday night Dave and I made good on the Christmas gift for Delpha and Max which was dinner out and tickets to see Bill Cosby. His routine was about old people, which seems to really fit at this point! He was very funny and we enjoyed it a lot (except the screeching laughter coming from a lady directly behind us.....if we weren't deaf before, we are now).

Sunday Kyla and Jed came to visit us after arriving back home and brought salt water taffy! Yum! Dave and I spent the day mowing the lawn (er acre), tearing down an old storage shed and burning all the limbs Ralph cleaned and stacked up and more. Brian showed up to drain the hot tub and there were some mighty hungry looks in some eyes. So we showered and went in to Izzy's for dinner. I love that...no cooking.

Report From Chang

Vonda called the nurse in San Francisco and asked for a copy of the report and the protocol to be faxed. The report states that "she tolerated her treatments extremely well and apart from some mild fatigue and alopecia, she does not have any major symptoms at this time". In case you are wondering, the medical term of "alopecia" means loss of hair, feathers or wool. So I guess since Kyla has not grown feathers or wool that I am aware of, it must mean hair. Basically she said that the tumor board reviewed the case and did determine from the MR spectroscopy that there is residual tumor. The recommendation is to either do nothing which is a no brainer (no pun intended), use either standard or experimental chemotherapy which is known not to work or possibly participate in a clinical trial looking at infusion of a toxin of IL-13 with Psuedomonas exotoxin combination.

I am no medical professional but I will do my best to explain what the protocol says. This new drug is called IL 13-PE38QQR (interleukin-13-Pseudomonas exotoxin). Basically it is "cytokine" which is a protein normally produced by cells of the immune system. This IL-13 "cytokine" which has been created using genetic laboratory techniques, will attach itself to special sites called "receptors" which are on the surface of cancer cells in the brain. In a person with a glioma brain tumor, there are high numbers of these receptors present. Normal cells in the brain do not usually produce these receptors. After the protein binds to the receptors on the tumor cells, the entire Pseudomonas fusion protein is taken inside the cancer cell and the toxin molecule becomes active and then kills the cancer cells by destroying the protein production of the cell. The brain cancer cells are killed because the malignant brain tumor cells, but not normal brain cells or immune cells, express high levels of the receptors for the binding. So normal cells should be left alone.

It involves doing a biopsy and testing the tissue to see if tumor cells are present. If the cells are not malignant then she won't be able to participate. If they are malignant, they will insert a catheter and inject the drug for two days. Then she has to wait one week for surgery to remove the hopefully dead tumor tissue. After surgery they will inject the drug into the cavity where the tumor was for 4 days to hopefully deal wth any residual tumor microscopic cells.

Ok, enough of that for today! Makes you want to get a medical degree huh?

2nd Birthday

Kyla and Jed are super parents!!! During all the move and trying to put stuff away, Kyla made Emma's birthday cake on Saturday for today's party. Jack and Kathy (aka Nanna & Poppy) came with Cooper and his girlfriend, Ashley. Wade came as well as Brian, Kelli, GG and Grandad, Mike and Linda, and of course, Dave and I. Emma had lots of fun opening presents and blowing out candles on her cake.

Kyla's Masterpiece

Everyone had a good time. We watched a segment on 60 Minutes about Dr. Henry Friedman from Duke University on brain tumors. He has been using Monoclonal Antibody Therapy and it looks very similar to the type of treatment Dr. Chang wants Kyla to have. We will check it out further.

A Move

Kyla, Jed and Emma move to a new apartment....well kind of new. They moved across the parking lot of their apartment complex to the same apartment they used to live in a year ago. It is much quieter since it doesn't have Main Street directly behind it. Brian came over and helped move most of the heavy stuff during the day and Dave and I went over to help after work. Now they can actually go out on the back patio and BBQ. Went to dinner at Torero's and then home to bed. First night for Emmy to sleep in her new bed.....

Visit to Neurosurgeon

Kyla, Jed and I went to see Dr. Kokkino, Kyla's Eugene neurosurgeon, today so he could explain the scans and the report from Dr. Chang to us. He showed us on the scan where there is some enhancement present consistent with tumor progression. He did explain somewhat the protocol that was recommended by Dr. Chang but did not have a copy of her report in Kyla's file so we didn't really get to see what she had to say. He did say that they were doing something along these lines when he was in residency a few years ago. Still we left not knowing a great deal more than before we came in. Aunt Barb came and took a walk with Emma while we were in the office. Lucky Emma got a delicious cookie...makes you want to be 2 again.