Just gone from our sight........

I am standing upon the seashore.

A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then someone at my side says: "There, she is gone!" "Gone where?" Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her.

And just at the moment when someone at my side says: "There, she is gone!" there are Other eyes watching her coming, and Other voices ready to take up the glad shout: "Here she comes!

And that is dying.

~ Henry Van Dyke

Memorial Jazz Celebration of Wes' Life

Saturday, September 20th

1:00 - 4:00 p.m.

Stockton Elks Lodge

8900 Thonton Road

Stockton, CA 95209

Please contact Terri at terri01-at-sonic-dot-net for more information or to have items added to the program.

Song with no music, as performed by it's writer, David M. Bailey

This was read by Mary Anne at Wes' Jazz Celebration:

The Journey Home

It happened so gradually
his pulling away
Looking toward somewhere
only he could see.
His body was with us, still fighting
So it wasn't easy to notice
his soul traveling onward.

He finally lay down
in the comfy bed that was prepared just for him
In his favorite room
with the sounds and smells of life around him.

Family gathered
and each one by one
sat down beside Daddy
Held his hand
cool rag on his face and neck
rubbed his arm
felt his beard, and the soft chemo-hair
and told him how much we loved him.

We tried to be peaceful,
but in the next room
was the soft murmur of voices
of a family that can't help enjoying each other's presence.
And from the backyard
the sound of the wind, and a doggie yipping at rustling trees.

We knew he was ready
but maybe reluctant to leave with us there
so we decided to go, and were hugging in the dining room
when his soul finally took flight.

I wake up this morning
grief and loss clutching at my heart
so I try to imagine
what Daddy's version of heaven is

Soft morning voices, windchimes on the terrace
the smell of coffee and bacon in the air
walking down the hallway
to the bright sunny kitchen
Where Grampa White sits reading the LA Times
outloud
to anyone who will listen
He walks in the door
and Gramma asks "Did you sleep well"?
Sit down Wes, I''ll fix you some eggs.

One year ago today

One year ago
We could never have known
What was in store
For not only Daddy
but for all of us who love him
How our family would have been changed
by not only fear
but by love.

Love from our friends
Our neighbors
Our co-workers
our extended family
but mostly each other.

For each day
each hour
each moment
we've been grateful

None of us know
how many more
we will have
But we do know
that we will never again
take them for granted
or forget
to enjoy each and every one.

A special "THANK YOU" to all of you out there that continue to return to
this blog for updates, your cards and letters to Daddy, and all of your prayers and concern.

Daddy is hanging strong, he's had a pretty rough go of it since being in the hospital. It seems as though you come out of those places with more problems than you go in with. Not only did he get the flu, his antibiotics to keep the pneumonia away caused a secondary gastro-intestinal problem (I won't go into the gory details) but needless to say we needed to get control of that quickly. He got pretty weak there for a while, but now that's he's on the right meds to control the issue he's getting stronger and stronger.

Mary Anne caught him mowing the lawn this morning...........

Quote of The Day

"This place SUCKS!"
~as told by Wes to Mary Anne when she asked him how he was doing on his third day at the hospital.

So, as you can see Daddy is A LOT more alert, and today he came home. He couldn't sleep very well in the hospital (who could?) so he sacked out before dinner for a few hours. Mary Anne promised him one of her "special omelettes" when he woke up, he still has sores on his tounge and lip and he needs soft food for now.

Now that he's home, I'm sure he'll get better even faster.

Rough Weekend, but getting better

Hi everyone:
Well, for months now Daddy has been enjoying "somewhat" strong health. The chemo really kicks his butt, but each time his blood tests remain strong and he's ready for another round. We're hoping the next MRI shows an even greater diminishment of his cancerous cells.

Unfortunately, Daddy experienced on Sat what all brain tumor patients fear: seizures. It was quite a shock, he went from shopping at Home Depot for fencing supplies with Joe to slumped in his chair while playing solitare in 24 hours. He was hospitalized over the weekend, and really spent most of Sat, Sun, and Monday sleeping, which is good. A CT scan on his head indicated no brain bleeds, which is AWESOME.

He aspirated some fluids during one of the seizures, so the fluid in his lungs has a chance of developing into pnuemonia. The doctors saw a spot on his lung in the x-ray and he was coughing, so they started treating right away. He had another x-ray yesterday, and so far we haven't found out if it's better or worse. His regular oncologist is going to go by and see him today, we'll get the straight scoop from him. It's so hard, because nobody there knows "how he was" and they assume they are dealing with an invalid. Therefore, not expecting much out of him. When they found out (after all of us speaking up) that he's a dog-walking, weed-wacking, Home Depot shopper they changed their tune.

This morning he was very much more aware of things. He called Mom to ask her where his watch was, he thought someone might have taken it. Then he called an hour later to see when Mary Anne was going to be there to take him home. Then, when I was talking on the phone with him I heard him asking for something to eat. The nurse said "well, I see you're done with your tray here" (meaning lunch) and "you'll get more at 6:00". Well, no doubt compared to how Mary Anne feeds him he's feeling starved to death! I think she's taking him some pudding cups this afternoon.

I'll keep you all posted of his progress, maybe he'll be able to come home tomorrow.

Fantastic Progress!

Daddy had a follow-up MRI last week. His first since they new treatment. We had been told that for many, this treatment worked like a miracle. For others, it didn't. Of course, our hopes were that he would get the miracle.

His doctor called Friday afternoon, the day after the MRI, even though they had an appointment to see him on Monday. The news was just too good to hold onto: The 3mm spot had reduced to 1.3mm. And everything else is "just fine". It was really great to get the news so quickly, we didn't have to suffer the PMS all weekend (Post MRI Syndrome).

So his treatments will continue along this path, no changes at this point. We're hoping that he'll be able to taper pretty soon (longer between treatments) to increase his ratio of tired days to good days. But for now, it's working and we're excited!

Lots of other stuff going on.....a whole bathroom remodel for the front bath including beautiful new EVERYTHING all the way down to the studs! Workmen coming in to fix the AC ducts, which have deteriorated with age and need repair/replacement. The yards are looking fantastic and veggies have been planted. It's all good!

Giving "BIG"

The last few weeks have proven to be challenging for Daddy. The new treatment protocol kicks his butt for a few days after each infusion. Then around day 5 or six he starts to feel better. He then gets almost a week of feeling “pretty good”, then back for another infusion. Last week (day four) saw him mowing the lawns early one morning before Mary Anne could get some food and drink into him. He caught a little hell for that, but was none the worse for wear.

He’s had a few more opportunities to get out and play, the last one yesterday’s “Rent Party” in Modesto. This “Rent Party” was a benefit of sorts to shore up the coffers of the Modesto Jazz Society. There were five bands total, each played one set. Each set was “donated” (meaning they didn’t get paid) so the club could get some money ahead by charging admission. Pretty cool.

I’ve been thinking a lot lately about “giving”. Mainly because I’m a big Oprah fan and I’ve been watching her “Big Give”. However, I have to say that in my opinion this show completely misses the point…..I mean, come on, “Give” is not a noun, for peat’s sake! They way she funds the “Gives”, it’s more like Oprah’s Big Spend”. These people aren’t giving, they’re spending.

Not to take away from the heartwarming stories (and I’m a sucker for heartwarming) but the “Give Big or Go Home” mentality completely turns me off. Giving is not about “Big”….it’s about seeing someone’s need and meeting it. But I guess “Big” makes better television.

Okay, I’ve got a purpose for this rant. I bring it up because watching the show reminds me of one of one of the most memorable moments in my life…and why I remember it so well.

Back around 30+ years ago, my youth choir at church went on a one-week “tour” through San Diego then to parts of Arizona. We sang at churches along the way, and the church folks puts us up for the night at each stop. Daddy went along as a chaperone and musician. I remember how tight money was, and the big deal was to make sure we had enough money to buy our lunches (back in the day you could get a McBurger, fries, and a coke and get change for a dollar). We also went to the San Diego zoo and a fantastic lunch at a Mexican restaurant in Scottsdale that served sopapillas and honey to die for. We pigged out, and for all you family members who recall the “Red Balloon Fried Chicken Incident” back in the sixties, you know how Daddy loved those sopapillas and honey.

Anyway, due to a misunderstanding about how much money I had on me, (Daddy thought I had $20, I only had $10), we were almost out of money by Thursday. We didn’t have enough money for lunch for the next two days. That was the one night the group stayed in a motel, so Daddy and I walked across the street to the supermarket to see if they would cash a check for him. Now, this was before the days of electronic information, to get an out of state check cashed was almost unheard of. Basically, my Dad had to PLEAD his case to the store manager; it was humiliating (as if we’d write a bad check!) but of course they don’t know us from Adam, and after all, we were Californians. Finally my Dad’s sincerity wore them down and they cashed a $10 check for us. “We’re rich, we’ll eat like kings for the rest of the trip!!!”

The next morning Daddy told me he gave $5 to Diana and Debbie, two sisters that were daughters of my parent’s good friends. They were also very short on money, and Daddy couldn’t stand having so much and they didn’t have any. I vividly remember being so PISSED at him, because here I was thinking we were on easy street for the rest of the trip and he goes and GIVES HALF OF IT AWAY. What a brat I was. I remember the look on Daddy’s face when I got pissy with him about it.

I really don’t think, with all the millions of dollars spent, Oprah can even come close to teaching the lesson I learned that day. For $5.

New Plan of Attack!!

So in the words of Emeril: We're KICKING IT UP A NOTCH!

So what does that mean? Well, Daddy's doctor didn't like what he saw on this month's MRI....it basically showed that the little pea-size satellite tumor that couldn't be removed in surgery appears to be growing....just a bit, but any growth is bad. So Temodar is out. New treatment in....

The good news is that Daddy is getting a very new and promising drug protocol. Well, the drugs themselves are not new, but the combo and the use for brain tumors is. Duke University has been doing some trials on this treatment, and results have proven promising. So promising that this has become an accepted "next stage" treatment after regrowth occurs during treatment with Temodar, even though the FDA hasn't approved the drugs for brain cancer treatment. We're very thankful that there wasn't even a QUESTION whether or not Daddy gets this treatment. I know from my internet research that quite a few people have problems with their insurance over this.

Now's the bad news: This is not an oral medication like Temodar. He's taking two different drugs, Avastin and CPt-11. Both are infusions. Which meant Daddy has to spend three hours every other week getting this done. He had a port installed in his upper chest/front of shoulder area. He's not really thrilled with it. His first treatment was today, Mary Anne said he watched a John Wayne movie during treatment. Tomorrow and the next day will bring the side affects, hopefully not too bad. He's used to feeling tired from chemo, but we're hoping he won't have too much of the other stuff, like nausea and intestinal distress.

But enough about that! Let's keep a good thought!

Daddy and Mary Anne and I spent an interesting day together last weekend (the 8th) attending a Brain Tumor Workshop here in town. It was a full day of treatment updates, caregiving tips, nutrition, stress managment, and inspiring testimonials of fighter/survivors. The very best part was at the end. We almost missed it, we were all really tired and overloaded with information, ready to go home. The presentations were running long, and Mary Anne was keen on getting home and I have to admit my tailbone was killing me because of the chairs. But I knew the last was going to be important for all of us, so I said we needed to hang in there. We were all so very glad we did.

When we went back into the room after the last break, we got seats up front. We see a microphone and a guitar. A tall thin guy walks in with a tiedye do-rag on and sits down and picks up the guitar. I didn't look at daddy's face, but I knew he was thinking "what the heck?".

He started picking riffs on his guitar, talking at the same time, using the guitar almost as an extension of his own voice. He talked about being diagnosed ELEVEN YEARS AGO with the same type of brain tumor Daddy (and many of the other folks there) has. As he told his story, he went through every stage of grief and ultimately his new outlook on life....all punctuated by music, songs he had written to inspire himself and others. The highlight for me was what he called a "song with no music". He said "some people might just want to call it a poem" but "I like to call it a song with no music". He read it aloud, not using his guitar this time, but just using his voice to create the mood of the "song". It was the words that hit me though. I felt like he had reached right into Daddy's brain and extracted every thought and feeling he didn't know how to say. I'm pretty sure Daddy felt the same way, if the look on his face was any indication.

I won't post the words, because they are copyrighted. But I will send you over here to read them at David M. Bailey's web site. You can listen to a few of his songs at the web site, and read a little bit about what he's all about. He's an amazing performer, Daddy's calls his show "intimate", which is exactly the feel Mr. Bailey is going for. If you ever have an opportunity to see him, you need to go!

Thank you for coming back to check on Wes' progress. Please drop a line to his e-mail if you wish, let him know how you are!

Is it spring yet???

January has to be one of the dreariest months of the year, the holidays are over, true winter weather hits. At least our version of "winter". Most of us (especially those of us who live in California) go a little stir-crazy when we can't get outside and do things we enjoy. Gardening and dog walking are two of Daddy's favorite activities, but he's been severely limited by yucky cold and rainy weather. Whever it's dry and the sun is out a bit, Daddy gets out as much as possible with the doggies.

January was round two of the 5-day on 23-day off chemo treatment, and this next week he will enter round three of the 5-days on. Before each treatment round he gets blood work done to be sure his counts are strong enough. His numbers are very good, and the effects of the particular chemo drug (Temodar) he is taking are being tolerated very well. From the research I've been doing on the internet, people either tolerate Temodar or they don't. And being able to tolerate the drug is a strong indicator of successful treatment. I'm really hoping that's the case for Daddy, of course.

The month hasn't been all dreary, we had this to look forward to:

Yes, Ladies and Gents, That's Joe! And of course, his lovely bride Erica. When they were planning the wedding they said they were hoping for rain, because it would look so pretty through the windows in the chapel. See the pretty rain? I didn't think so. Okay, maybe a little bit. It was a little bit pretty. But mostly wet. And COLD. And did I mention wet?

Nobody really minded, we had a wonderful time, and it was really nice meeting Erica's family. Erica has a great big warm heart (just like Joe) which is reflected in the rest of her family. Although we almost had a SMACKDOWN between the "Aunt Terris" (Not really). Get this: Erica's Aunt Terri has the same birthday that I do. Not just the date, but THE YEAR. I mean, like twins or something. I knew we were going to get along when she immediately asked me the hour of my birth.....and since she was born two hours ahead of me, she thought she was "Aunt Terri One". But I had been giving the dilemna a great deal of thought, so I was ready with my answer than since Joe is older than Erica, I was Joe's Aunt Terri before she was Erica's Aunt Terri so I'm Aunt Terri One. Hard to argue that. HA!

So, back to Daddy......here's a good shot of him with Joe:

Our handsome gents

And of course another of Joe with Erica:

We have so much to be thankful for, Daddy's feeling good is the biggest one. It makes all of these occasions that much sweeter, and makes all of us aware of how much we have to be grateful for. I've made a few online aquaintances with other people who's family members are fighting the same or similar fight that Daddy is. There are many who have lived for YEARS (one of them eleven!) using the same treatments that Daddy is getting.

On the other hand, and who knows why, there are others who aren't. Who are getting the very same treatment, the same radiation, the same drugs, as Daddy. And they aren't doing well. Their blood counts dive, they have seizures, they can't maintain enough nutrition. I don't know why this is, but for whatever reason this happens.

So, in closing I have a request. All of you that are praying for Daddy.....and I know there are a lot.....please keep my friend Melissa and her mother Lorraine in your prayers. Lorraine was diagnosed with the same GBM a month after Daddy was. Three months after the birth of her first grandchild (Melissa's baby). And she's not doing well. She wasn't able to finish her radiation due to severe side effects, and her strength isn't building back the way it should.

Thanks everybody, for checking back with us to see how Daddy is doing! I hope this finds everyone happy and healthy. Drop Daddy a line at his e-mail (he does read them!). He still isn't much for writing back, but who knows? The way he's heating up the computer playing solitare lately, he might decide to try and actually TYPE WORDS. HA HA.