Wednesday, September 25, 2002

Great MRI Results, Mono, An Elephant and a Visit with the Flanagans

Kyla and Jed returned from San Francisco and her scan was clean!! She is so relieved as we all are and thankful that our prayers are being answered. She doesn't have to go back for two months now. What a nice break for her! We will keep praying that her future scans are just as good as this time. Thank you to Steve and Cindy for the airline tickets and we are all saying special prayers for Cindy's appointment this week. She also has the same cancer as Kyla and is one of the first patients to be on this treatment and so far has done well for a year!

Kristi and Pat came to visit with Jordie, Addie and their new baby girl, Lexie. She is so tiny still....but has doubled her weight since birth. They had an appointment at Dorenbecher Hospital to talk to a neurosurgeon and neurologist about placement of a shunt for her hydrocephalus. It looks as though it will have to happen within the next two weeks. It was so great to see them and our prayers are with them to get through all these medical procedures and take one day at a time. Barb and Rick came to visit with them on Saturday night and we had a pizza and salad.

On another note, we bought two cows (or should I say one cow and an elephant) from Steve Keele Saturday. After he and Betty Jean dropped them off, the biggest steer we spent a little time putting him back in and fixing fence. Since he was taken from his mom he mooed all night long and so none of us got much sleep. By the next morning we were all thinking maybe we would like to have a little veal instead of waiting. He sounds like an elephant....Hmmm! But the good news is that he is over that part now.

Jill has been feeling poorly for a few weeks and found out Monday that she has mononucleosis. So now she has to take it very easy for a while until she begins to feel stronger.

Emmy spent Sunday night and Monday with Gram and Grandad and as usual we had a great time. Brian never had enough to do so as usual he teased Emmy the whole time he was around will be good when he starts back to college soon. I even managed to have my first ever tricycle wreck (no I wasn't riding it...I was trying to save Emma from going down the driveway too fast).....the driveway is very steep and those things don't have brakes. Well Emma didn't get hurt but I scraped my knees and knuckles. I really do think I am becoming my mom....all I needed to say was Whoa! There are some stories about Grandma Mae that we could tell for months.

Monday, September 16, 2002

A Day with Emma, Floors and Missing Laundry Basket

Happy Birthday Karen!!! There are a bunch of family birthdays this month. I won't mention age since mine was one of them and I fear retaliation in some form.....I have kind of sadistic brothers.

Saturday Emma spent the day with us so Kyla and Jed could take a class on all that is involved in purchasing a home. We had a good time chasing the chicks, bugging Uncle Brian and watching Toby the floor guy take out his toe prints and hand print from the floor in the kitchen. Well after we all ended up walking in it accidentally or otherwise, we decided that maybe we will fix it ourselves. Toby came back on Sunday to replace a board that was faulty and he again put a finish (in theory) on the kitchen. Still missed a bunch of spots. However, this is it. No more returning to my kitchen. We have been living over, under and around furniture stacked in the living room for a month and a half. Before he came back to fix the boards yesterday, Brian couldn't find his laundry basket! Hmmm. Later found it in the back of Toby's car.....don't want that back now!! He must have needed it more than Brian.

Sunday Kyla, Jed and Emma came out to sew Emma's Halloween bag that Kyla cross stitched for her. It turned out very cute! I will try to get a picture of it soon and put it up here. We ordered Chinese food and just enjoyed being together.

My aunt Nancy put me in contact with the brother of another brain tumor patient and he sent me an inspirational message that was told by Lisa Beamer on Good Morning America. I want to post it so that we can be reminded that each and every moment of every day is to be treasured (see below).

If you remember, Lisa is the wife of Todd Beamer, who said 'Let's Roll!' and helped take down the plane that was heading for Washington D.C. She said it's the little things that she misses most about Todd, such as hearing the garage door open as he came home, and her children running to meet him. She's now the Mom of a beautiful little girl, Mary.

Lisa recalled this story:

"I had a very special teacher in high school many years ago whose husband died suddenly of a heart attack. About a week after his death, she shared some of her insight with a classroom of students. As the late afternoon sunlight came streaming in through the classroom windows and the class was nearly over, she moved a few things aside on the edge of her desk and sat down there. With a gentle look of reflection on her face, she paused and said, 'Class is over, I would like to share with all of you, a thought that is unrelated to class, but which I feel is very important. "Each of us is put here on earth to learn, share, love, appreciate and give of ourselves. None of us knows when this fantastic experience will end. It can be taken away at any moment. Perhaps this is the powers way of telling us that we must make the most out of every single day. Her eyes, beginning to water, she went on, So I would like you all to make me a promise. From now on, on your way to school, or on your way home, find something beautiful to notice. It doesn't have to be something you see, it could be a scent, perhaps of freshly baked bread wafting out of someones house, or it could be the sound of the breeze slightly rustling the leaves in the trees, or the way the morning light catches one autumn leaf as it falls gently to the ground. Please look for these things, and cherish them. For, although it may sound trite to some, these things are the "stuff" of life. The little things we are put here on earth to enjoy. The things we often take for granted.'

Every once in a while, I think of that teacher and remember what an impression she made on all of us, and I try to appreciate all of those things that sometimes we all overlook. Take notice of something special you see on your lunch hour today. Go barefoot. Or walk on the beach at sunset. Stop off on the way home tonight to get a double dip ice cream cone. For as we get older, it is not the things we did that we often regret, but the things we didn't do."

Monday, September 9, 2002

Birthday, Games and Such

Labor Day Kyla, Jed, Emma, Jill, Wade, Kelli and Isaac all went to the coast to have some fun before school started. The day was nice and I will put a few pictures up soon.

Friday was my 45th birthday and Dave made a great salmon, Kyla made a marinated pasta salad and fruit salad. The dinner and company were terrific with all the kids and boyfriends, etc. there to celebrate. Wade brought little "Missy", Barb and Rick's new puppy because Jill was house/dog sitting for Aunt Barb. Missy was so brave that she went out and barked at the baby chicks while hiding behind Kyla's legs. Thank you everyone for the nice gifts.

Fierce dog, Missy

Dave has been doing his Consumer Reports shopping for a new big screen TV for his 50th birthday. We are giving him plenty of time (like 2 months) as we all know how long it takes for him to shop and make up his mind. Another thing that keeps him busy is the installer for the wood floors. We have a second coat of finish down but are still waiting on the fixing some mistakes. So this is going on the 7th week of a 10 day job. Patience!!!!

Saturday Uncle Tony took Kyla to the Duck game and Brian and Wade went also. We all went to GG and Grandads for hamburgers afterward and got to visit with Tony, Gary and Patti, Mark, Eric and Molly. Karen sent down some pretty cool looking slippers for Kelli. They kind of look like Spike's brother....white dogs. Crazy!

There is some good news about Kyla's particular IL13 treatment that came out today. The press release was from NeoPharm, Inc. which is the drug company sponsoring the clinical trial. The information was presented at the European Association of Neuro-Oncology (EANO) Congress showing encouraging preliminary data from ongoing Phase I/II trial. Enrollment has now begun in the first global Phase I/II clinical trial of IL13-PE38; the third NeoPharm sponsored clinical study to date in patients with recurrent or progressive malignant gliomas. They are working to quickly advance this treatment to Phase II/III and get it out there on the market (read more here)

Another story that aired on Dateline NBC is about an immunotherapy trial that Dr. Laiu at UCLA is using. It is so exciting to see all the hard work and hope out there for the thousands of people going through the same thing Kyla is. Our hopes and prayers are that everyone will be able to benefit from this not just now but in the future.