Cecilia

Feb. 18th, 2010 03:37 pm
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After three days at 0.2, today her White Blood Cell count is 0.7. This is the low end of where it should be.

She is not well otherwise. There is a viral infection her lungs and lots of side effects form the meds she is on. She is still spiking fevers. Kidney function is weak. All of this is supposedly manageable and we are told she is doing better than most marrow transplant patients. It is still a lot for an 8 year old to go through and hard to watch.

But the 0.7 WBC is really good news.
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WBC: Sat 0.0%; Sun 0.1%; Today 0.2% !!!

I'm smiling.
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These are the first since before the bone marrow transplant over two weeks ago. Her white cell count today was 0.1%. She has a ways to go, but it is more than zero.
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Thanks for all of the good thoughts, prayers and songs sent our way today.

Cecilia woke up after the transplant and asked if she could go home now. She's napping again. Now we wait. I think I might have a good show tonight.
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Just got word that they are waking Sylvio up after the marrow extraction. He went under around 7:30 and they had to wait on lab work to know if the single extraction yielded enough cells for the transplant. It did and the infusion into Cecilia will proceed this afternoon.

Cecilia's part won't be much different to the many rounds of deep chemo she has had before. There is some possibility that she will react differently. After that it will be 2 to 3 weeks before we know her marrow is back in business.
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My life has been an emotional rollercoaster lately. I’ve spoken and posted about the good news, the ups in Cecilia’s battle with leukemia, but not so much about the downs.

The cancer reasserted itself in mid November. The heavy chemo drugs they put her on shut down her insulin production and she almost died on the day after Thanksgiving. That particular drug ran a short course and blood sugar levels could be managed the same as for a diabetic. When she was done with it her pancreas went back to normal functioning.

The rest of the heavy chemo continued through last week, to force her into remission. It did. She was over to our house two days last week. She was her normal bight, funny, cheerful self. Except for being a bit frail and bald. She did crafts with Grandma, played games and made delightful comments on anything that came up. Then the world changed.

This week that rollercoaster is making its slow suspenseful climb to the high peak. (Kachink….. Kachink….. Kachink…..)
Cecilia has been in the hospital since Friday undergoing a lot of chemotherapy and radiation treatments. The difference is that these are designed to destroy her bone marrow. On Friday her 18 month old brother Sylvio will be put under general anesthesia and as much marrow as his little body can spare will be harvested. Cecilia, also under general anesthesia, will be waiting to receive this. Sylvio is an almost unheard of 100% tissue match.

Long before this was scheduled, Riverfolk had scheduled a show at the Coffee Grounds this Friday evening. When these surgeries were scheduled last week, I considered canceling the show, but didn’t. I suppose this is my version of denial. In troubling times I seek out doses of normal. Everything will be fine and I can do the show as planned. At present I am still planning to do the show.

I was going to work as usual on Friday as well. “Nothing to do at the hospital but wait.” I’ve changed my mind. My child is putting her healthy, precious, baby at risk to save her very sick precious eight-year-old daughter. I’ll be there. Being there is important.

Kachink….. Kachink….. Kachink…..

Music

Jan. 7th, 2010 06:58 pm
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My other band, Snowball's Chance, is playing at the 42nd Ave Station tomorrow night from 7-10PM. This is at 42nd and Lyndale North in Minneapolis.

There are three Riverfolk shows coming up later in the month. More about those later.
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Cecilia

She appears to be in remission. Long version behind the cut )

She turns 8 next week.

My fingers

I'm on my second day with no bandages. Long version ) All-in-all I'll be back in all night jamming form soon. I expect no problem with the next Riverfolk show on Oct 23.
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Thanks to all for the good wishes, hugs (virtual and physical) and offers of help.

Cecilia is going home from the hospital today after only 12 days of the expected 3 to 4 weeks she was expected to stay. She has responded amazingly to her treatments. (I think it takes a lot to amaze these doctors). She has beaten the pneumonia even with the immuno-suppressing chemotherapy for the leukemia. BEFORE her second round of chemo earlier this week, there were no traces of leukemia remaining in her blood. The abnormal cell count in her bone marrow was down to 45% from an initial 80%. She has had almost no adverse reaction to her chemotherapy (two rounds now). She is cheerful and has a good appetite. Pretty much her old self. Aside from the reality that she does have leukemia, we couldn't be more pleased.

She will still have to go through the 2 year treatment regime, but it seems it is not going to be the ordeal it might have been for her and all signs point to her kicking some cancer butt.
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My daughter said something like this Sunday.

My 7 year old granddaughter, Cecilia, was sent to emergency Friday then admitted to the hospital with Pneumonia in both lungs. Saturday her blood work showed some oddities in some cells. Sunday she was diagnosed with Acute lymphoblastic leukemia (ALL). Monday, after it was determined which type she has, she began what will be a 2 year long regime of treatment with her first round of chemotherapy.

She's only seven.

Prognosis is good. Complete remission rate for children is %85. She has several other factors going in her favor beyond that. She is doing amazingly well settling into life in the hospital. It will be here home for the next three or four weeks.
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I wrote about needing more music a while back. I've gotten a few good doses recently.

Read more... )
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Monday we went to see Brandi Carlile at the State Fair. This was a freeby at the Bandshell. WOW! It was honestly one of the best shows I have ever seen. We went back last night to see her again. Outstanding.

I've been feeling that I haven't been getting enough music lately, but that's not it really. After the Bluegrass festival I picked up my mandolin and have been playing that quite a bit. Scheduled going to the Fair to see people I know playing, so went last Thursday as well. Riverfolk is kind of dead in the water right now, but hopefully that will change soon.

I came away from the Monday show thinking I need to expand what I play. I go to Bluegrass fests and have a great time, but this isn't my music. I can take country in small doses and Irish in even smaller ones. What I felt after the Monday show was that deep down I'm a rocker. I've got some roots in folk, but rock was the music of my formative years. It resonates deeply in me. I am expanding my music arsenal in many ways. More instruments, more songs, and more techniques. Don't expect much immediate change, I will just be becoming ever more eclectic.

The realization I came away for the Tuesday night concert is that I really miss playing in a band. I think that's why I go to so many jams. It's not quite the same though. Not sure what I'm going to do about that.
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Silvio, our 12th grandchild, was born at 2:22 this afternoon. 8 lbs 12 oz and all around healthy. Mom and Dad tired, but doing fine. Grandma is bouncing.
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Gibson is about to release a Les Paul guitar that has frequency detecting circuitry in the bridge, motorized tuning machines, and an on board CPU to manage it all. The machines are only slightly bigger than standard mechanical ones.

The guitar tunes itself.

You can select a variety of tunings or program your own. You can also adjust intonation.

Runs about $2200.

From the ad:

# 2 rechargeable batteries charged through the guitar jack
# About 250 tunings per charge
#
# Tunings:
# Regular
# Open E
# Open G
# DADGAD
# Hendrix tuning (1/2 step down)
# Single and double dropped-D tunings
# Custom tunings
# Reference tuning to other instruments
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I've just posted a few entries at [livejournal.com profile] circleofmusic.

There are two different kinds of participation in lj communities that I think doesn't exist for friending lj users. You can watch a community or join a community (or do both). I point this out because there are several people who I would hope and expect to participate in the discussions at [livejournal.com profile] circleofmusic who are listed as watching, but not listed as members. I think you have to be a member to comment.

So please go over to [livejournal.com profile] circleofmusic and read, join, and post.

Thanks
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Betsy's Back Porch is at Nicollet and Diamond Lake Road.

Note: It is the Diamond Lake Road Bridge over I 35W that is gone and affecting their business. 46th St will get you across.

From Bobb Fantauzzo:

In addition to providing a wide selection of coffee, tea, beer, wine and
food, Betsy's Back Porch offers a wide variety of music. Having a venue to
share their music with the general public in a comfortable,
listener-friendly environment is a great asset to musicians, audience
members and the neighborhood . it would be unfortunate for Betsy's to close
permanently as a result of lost revenue caused by the 35W construction
project.

So show your support and join us on Saturday if you can. Special events are
scheduled; including outdoor grilling, a silent auction and LIVE MUSIC ALL
DAY LONG. The music ranges from folk to pop to rock to blues to classical
guitar to jazz . and there will even be some belly dancing thrown in for
good measure.

Here's the music schedule:

11:00 Jeremiah Bohn - blues
& Chas Somdahl - folk

12:00 Bobb Fantauzzo - jazz / zen

1:00 Mark Bussey - classical guitar

1:30 Patrick Garry - mellow rock / pop

2:30 Mirah Ammal - Belly Dancing

3:00 Laurie Potter - folk / rock / pop

4:00 Howard Krantz - original / folk

5:00 Beth Kinderman - folk

6:00 Positronic Croutons - blues / rock

8:30 Hot Box - pop / rock
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Tomorrow, Sept. 29, I will playing set at Betsy’s Back Porch, from 11 to noon. Joining me for this set will be my friend, Jeremiah Bohn of Bluegreen.

This is part of an all day benefit for this wonderful neighborhood coffee house (they serve wine, beer, sandwiches, and a variety of other treats as well). Located at Lyndale  Nicollet and Diamond Lake Road in south Minneapolis, they have seen a large drop in business with the since the nearby freeway construction started. The owner decided to close the business a couple of weeks ago. This benefit is part of community response that will keep them open for now.

Edited to correct address
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