I second that emoticon!

Hi everyone -

I wanted to reiterate what Pat said. Thank you SO MUCH to everyone who has called to leave messages - ET loves hearing from you! Its not so much what you say, its just hearing your voice. She absolutely loves it.

So please call! Get your kids to call - she loves hearing from the little ones. And don't forget to hit the "#" key when you're done speaking (saves the message), and then hit the "1" key from the menu options (delivers the message). I can't tell you how many times I've called to leave a message, and then hung up after speaking by mistake.

--jimmy

Tuesday Morning - July 31, 2007

Elizabeth had a very difficult night. Things just aren't coming easy for our girl. She is being given more oxygen as her lungs are being affected by the progress of the meningitis. She is also tiring more easily which of course she hates.

Last night she listened to all of her phone messages and absolutely loves them. Keep them coming because everyone of them mean a lot to her.

Sister Pat

WHAT THE...

Hey Jody, do you remember this picture? Where were we? And what were we doing? :) he.he.he.

Pat

Monday 7/30 - noon

It's so heartwarming to see how the network of family and friends make so many wonderful things happen. Knowing this makes it so much easier to be here day in and day out.

Elizabeth is still eating up a storm. Aaron and Mary Agustus spent sat. eve. w/her and Rachael is coming tonite. Wait until she hears lights are out at 9pm. he he.

The care here on floor 1-8 at St. Josephs is nothing short of amazing. We do not want for anything. I have met some wonderful people, mostly patients families. We tend to bond easily in this situation and need the comfort.

Thanks for everything, especially the prayers.

--Jody (Et's sister)

Monday 7/30 - morning

ET had an uneventful weekend, which is always good around there. It was a bit of a rough morning though - they moved her and it was very painful. I think they'll be adjusting the pain meds to ensure that doesn't happen again.

Back to the grind today. She's scheduled for some xrays and her radiation treatment. I hope the move is easier this time.

I'm going to purchase a digital camera to keep in the hospital room so we can get pictures no matter who is there. A picture says way more than any of us can possible write.

On the Jon Lester front, we've now got several angles going:

1 - letter to the parents
2 - letter to Red Sox organization
3 - letter to a friend of Jon Lester
4 - letter to Billy Starr, founder of the Pan Mass Challenge

Billy Starr responded that he would work on our behalf, so hopefully we'll get something going there.

--jimmy

Strange bedfellows

Ok, now THIS is what I call visitation! Thanks to Aaron for taking this pic and sending it in. And thanks SO MUCH to the caring staff at St. Josephs for accommodating just about every request - they are the BEST.....

Its 10 a.m. - do you know where your phone is?

The messages are wonderful! But they're just trickling in. Pick up your phone and call ET! Just say hi, or whatever.

866-917-3843

Don't forget to press "#" when you're done speaking, and then press "1" to send the message!

Required reading

Final Gifts, by Maggie Callanan and Patricia Kelley. For those close to ET, this book should be required reading. It does an excellent job of describing what ET is experiencing, and helping the reader understand how to deal with it and interact in a meaningful way.

Saturday, 7/28 - morning

ET had a very restful night - she was so exhausted from yesterday's activities that she skipped the bedtime prep and just crashed for the night.

This morning she ate like one of those construction workers hammering the concrete outside her window:

- eggs
- toast with jelly
- croissant
- two cups of coffee
- juice

She is alert, though at times she seems confused about things. This sometimes causes her caretakers overreach in their efforts to help her understand. Thankfully, ET retains her sense of humor about it all. This morning, Jody was trying to brush ET's teeth, and she was telling ET to open her mouth - for effect, Jody opened her own mouth wide to demonstrate. When ET didn't comply, she repeated and opened her own mouth wider. Finally, ET looks up at Jody with a smile and says "You close your mouth first!"

--jimmy

SAWX RAWK!

Living in New York, I know that many of ET's friends and acquaintances are Yankees fans. And most are probably aware that ET is a die-hard Red Sox fan.

Last year the Sox' highly-regarded top pitching prospect had his major league debut on June 10. In 15 starts, Lester went 7-2 with a 4.76 ERA - an awesome rookie year by any measure. However, Lester's rookie season was cut short on August 23 when he was diagnosed with cancer. After 3 months of chemotherapy, he was declared cancer-free in December. Since then, he's been on a program of rehabilitation in the minor leagues.

Last week we witnessed his return to the Boston starting rotation in a game against the Cleveland Indians. Over six innings and 96 pitches, Lester gave up only five hits and allowed two runs, while striking out six. The Sox won. In a post-game interview, Lester remarked how he'd received a hand-written letter from Lance Armstrong during his chemotherapy treatment, and how much it meant to him.

So how could I resist when I found a Jon Lester autographed "cancer survivor" baseball? I just had to get it and have it mailed to ET. But I'd love to take it a step further. My goal is to have Jon Lester leave a voice message for ET. I've written a letter to him and his parents asking them to consider taking a minute to leave ET the message.

So my question to all of ET's friends and acquaintances is "do any of you have any connection to MLB or the Boston Red Sox?" If so, that would likely have a better chance of reaching Jon Lester's ear than the letter I wrote.

Please let me know!

thanks --jimmy

Bethy Boo

Pat commented that no one likely remembered when Elizabeth was called "Bethy Boo". Well, I'm certainly old enough to remember! This picture was taken around that time. I can actually remember this photo shoot! I remember the old hi-fi behind us, and how Dad used to cha-cha-cha to records on it. He'd pucker his lips and make clucking noises behind his teeth as he danced. Oh yeah man, it was cool!

DARN - I was as good-looking back then as I am now! Yeah, I guess ET was kinda cute too..

--jimmy

Friday, 7/27 - Afternoon

ET has had a great day today - she is eating a good deal more than she has recently, and she went for another "stroll" outside. While out in the parking lot, Michael brought Hannah over to her bedside for a visit!

She resumed radiation treatments. Likely due to radiation, she's begun having a cramping sensation in her palms - she feels as though she is gripping a cup.

Other than that, all signs are good, and its a great day...


--jimmy

Pounding our message home

I want to make sure that everyone understands the voice message system - you have to hit the pound key (#) after you've finished your message in order for it to be saved. After hitting the pound key, you'll be given the following menu options:

To publish your message - press 1
To save your message and publish later - press 2
To listen to your message - press 3
To rerecord your message - press 4


So in a typical call you'd say what you wanted to say, then press the pound (#) key. After listening to the menu options, press option "3" to hear what you'd said. When the system finishes playing back your message, you'll get the menu options all over again. If you like your message, press option "1", wait for the confirmation, then hang up. If you don't like your message, press option "4" and you'll start all over again.

Just remember, the message won't get recorded until you press the pound key, and the recorded message won't get delivered until you press option #1.

Hope this helps! Keep those messages coming - its AWESOME!

DOTS

Ask and you shall receive Sis - the DOTS are in the mail!!!!!!!!!!

Love

Pat

ps - Finley and Bergen don't call me Gramma Dots for nothin! :)

ET Phone - Home

I remember when Barbara was battling her cancer, I didn't call her as often as I'd have liked. Sometimes, its just difficult to know when to call, or what to say, even when you're as close as brother and sister. Then, when I'd finally make the call, nine times out of ten it would be bad timing, or she'd not answer because she was not feeling well or in treatment or sleeping and had turned her phone off. After a while, I got into the habit of leaving voice messages that far exceeded anything I could have said person-to-person.

With ET, its virtually impossible to call her - even if you could get the timing right, she simply can't work a telephone on her own.

So I got to thinking, wouldn't it be great to have a number that you could call, and you'd be guaranteed that you'd get an answering machine instead of someone picking up the phone and taking a message?

Well, we've got that answering machine. Just dial this toll-free number: 866-917-3843. You'll be prompted to leave a message, up to 2 minutes in length. The message will be podcast to ET's iPod, where she can listen to the messages whenever she's able, as often as she likes.

So call her up, and leave her a message. Say hi. Tell her a joke. Read her a quick story. Tell her you miss her, wish her well, tell her to get her !@#$ back to work - whatever. Even if you don't know ET that well, its a great opportunity to say hi or introduce yourself and let her know you are thinking about her.

The podcasts are private - only ET will get them. So call early, and call often! You don't have to say much - just say HI!

=================================================================================

When you call, you will be prompted to leave a message up to two minutes in duration, and then press the pound (#) key to indicate the message is complete. At that point, you will have the following options:

To publish your message - press 1
To save your message and publish later - press 2
To listen to your message - press 3
To rerecord your message - press 4

Once you have published your message, it will be sent as a private podcast and uploaded to ET's iPod, hopefully within 24 hours. She can then listen to them whenever she likes, and as often as she likes.

ET, unabridged

If you look up the words "grace" & "dignity" in the dictionary, you will find a picture of the second person from the right.

--leslie

Thursday, 7/26 - morning

Elizabeth had a restful night last night. She woke up ravenous and Michael fed her eggs, fruit, juice, coffee and ice cream! She wanted the toast but they said no.

When Doc B came, she was absolutely perky! He just smiles and is amazed as we all are, at her spunk and will to continue. She is now well enough to continue her radiation and will continue this for the next 7 days, God willing. The radiation should not make her sick to her stomach.

I put up about 20 gel flowers that stick to the window and she is constantly reminded of her flower garden.

I wish you all could have been here yesterday when we took her outside! How happy she was!

Elizabeth is an example to everyone who meets her. She may be my "somewhat" younger sister, but I continually learn from her, even in this hospital room.

They say if you meet one true friend in a lifetime, that you are lucky. Well, Elizabeth has proved this wrong as she has more friends than I could ever dream of. They are supporting her in so many ways. I actually had to put a sign on the door to limit her visits to 10mins. because she had the entire city of Baldwinsville here every day. :)

She truely is our angel......

--Jody

Hints from Eloise

To send ET an eCard, simply go to http://www.sjhsyr.org. On the left-side navigation bar, look for the link "For Visitors". Roll your cursor over the link, and you will presented with several options. Click on "Send an eCard". Follow the instructions. The card will be delivered by ET's caretakers.

Thanks Eloise for the tip - I know ET loves getting cards!

Author, author!

This blog is open to anyone that wants to post a story or news about ET. If you have something to say, let me know! Send me an email at jim@jimchandler.us and I'll set you up to post to this blog.

Coming soon - I've set up an 800-number for folks to call in and leave ET a message. The messages will be podcast to ET's iPod, where she can listen to them whenever she wants. I've got it working, but I'm just trying to eliminate the PIN number requirement for callers. Look for instructions tomorrow.

-regards, jimmy

Bad Luck or Devine Providence?

Anyone who knows me, knows I do not believe in luck, good or bad. I believe what the Apostle Paul wrote in the book of Romans, chapter 8, verse 28.

This morning I went to the airport with Michael Smith for my 0600 flight home. I booked a one-way flight home on the Internet for a decent price. I showed up with time to spare and hand my paperwork to the agent. She says, "sir, that flight left yesterday morning".............WHAT!...... How can that be?..."sir, the dates are for 24 July, today is the 25th" Dumbfounded, I was asked to step out of line and call my ticket agent. This I quickly did. After several frustrating phone calls with Expedia and United, bottom line is: Earliest flight is tomorrow, an extra $400+, and a $100 penalty. After much sighing, I hang up the phone wanting to throw it against the wall... my anger and hopelessness peaked. All the time I know my attitude is wrong (Rom 8:28). I decide there is good reason for this, even if it was my own fault. I put the whole matter into God's more than capable hands.

I walk up to the counter after another 1/2 hour wait and explain. She tries to pull it up and they have already cancelled my reservation. She says, "let me see what I can find. How about a 4:58 flight today, arrive Seattle 11pm....First Class?" How much is that going to cost me? "Nothing, I will just put you on"....alright then, as I look up. I was able to go back and have a nice lunch with Mom and be there for Elizabeth's Big Trip...what a gift.

I am now at O'Hare in Chicago. My flight is delayed, so I started walking around looking for Internet and food. After a long walk, I find a USO; Internet, sandwiches, snacks, coffee, sleeping room, big screen theater and staff more than eager to serve. The picture is one I just snapped. Another Gift.

ET falls into the Romans 8:28 category... All things for those who love Him!!! She is in good hands

Brother Mikey

Stop all construction!

Leave it to ET...Not even the toughest jack hammer operator could resist!

Today Elizabeth decided she wanted to go for a run, she had to settle for an electric bed stroll out to the parking lot. 4 nurses plus a plethora of accouterments and it was off to a private parking lot outside the radiation department. When they get outside there are all these jack hammers and construction noises coming from the parking garage above. Donna, one of her many awesome care takers, goes over and tells them to stop all construction, cuz ET is in the house. Next thing you know, silence! Pretty soon, her sister Jody has all these guys over flirting with ET. Only ET could pull this off!

I showed up just in time to click off a couple cell phone pictures. Meanwhile I am listening to the nurses discussing whether or not what they just did was legal. At that point I was wondering if it was legal to steal the yellow flowers out of the neighbors yard across the street. The two nurses standing near me said, I am sure it was OK. It only struck me on the back to the room that they were both wearing student nurse patches on their arm sleeve! Donna assures us a new precedent has been set at St. Joseph's.


What an amazing staff here! They adjusted manning and schedules to accommodate us. Now I know why my flight was mixed up and I could not fly out this morning. What a gift to witness this.

OH BROTHER!

I just found this oldie of Elizabeth with Mike and Jim - when they all had a lot more hair...

Pat

THAT STINKS!

I was just talking to Jody who stayed the night with Elizabeth. She said that the Doctor was examining Elizabeth this morning, she opened her eyes and started talking to him, inquiring about the possibility of going home, he said that was a possibility but that she wouldn't be able to drive for a year because of the anti-seizure medication she will be on. In response to that she said "that stinks". Then she immediately followed that up with "oh no, that just won't work". The doctor looked over at Jody and just smiled. You go girl!

Wednesday morning - 7/25

ET is becoming more alert, thanks to the change in meds. She tends to forget things quickly though, which, you know, some of us can relate to. Now, what was I s-a-y-i-n-g... hm...

Oh yeah, Doc wants to see some more specific improvements before giving the green light to restart radiation treatments. So for now, its a waiting game. He says she is strong and doing remarkably well. That's something to hang onto for now...

--jimmy

There never was a horse like Shane...

I got birdied so many times this past week that my ears are still ringing!

Mom recently told me a story that had me laughing in tears. Part of the humor is in the way that she tells it, so my retelling it won't be quite as funny.

We lived for a time in a large house on a hill overlooking North Avenue in Haverhill, Ma. The house had a huge barn, a corral and boarding horses. Barbara had her own horse - a gray standard named Shane. Shane had a habit of getting loose and running out in the street where people would have to catch him and bring him back.

One day Dad had gone off to work and all the kids had gone off to school. Mom was doing some housework in her bathrobe and curlers. She heard some commotion and looked out the front window - several men were running up and down the street trying to catch a gray horse. She looked out back and saw the barn door had been left open.

Without hesitation, she ran out the door and stood at the top of our hill, overlooking the street. As the men ran up and down the street below, she stood there in her bathrobe and curlers shouting out "Shane! Come back Shane!" When the men eventually caught the horse, Mom started clapping and cheering. As they walked the horse back up the street toward the house, Mom was clapping her hands, making some smooching and clicking noises and calling out "Come Shane! Come on Shane!" At one point the men and the horse just stopped and stood there looking up at her. Then they quickly loaded the horse into a trailer and drove off.

Perplexed and alarmed, Mom ran through the open door of the barn and over to Shane's stall - there stood Shane, blinking back at her.

This crazy woman in curlers had been yelling at two men trying to catch their own horse!

--jimmy

Have You Been Birdied?

Anyone who has known Mom for any length of time knows her propensity for sayings. Tonight I was giving her a hug, saying my goodbye's, when she says to me, "you don't have to worry about being birdied"...


AKA: no hearing aid in!



If you hug mom these days and you hear a high pitched distortion noise...You've been birdied


She came up with that all by herself...really!

Bother Mikey

ELIZABETH

This is one of my favorite pictures of Elizabeth. It was taken at our last family reunion in May of 2006. I wonder if any of my brothers and sisters remember when we called her 'Bethy Boo'.

I am so thankful and blessed to be a part of this amazing family!

Much love

Pat

Tuesday, 7/24 - afternoon

It is 1500 on 24July...thats 3pm for you non-mil types. ET is awake but in and out of sleep. Whenever I move around the room her eyes follow me even though they are half closed. She had said she can see me fine, even without the patch over one eye. The doc was encouraged by this too. We all agree her eyes look better. Doc said it tells him there is neurological improvement. She was able to eat lemon ice twice this afternoon. Just a few spoonfuls along with some water on a sponge. I know there will be ups and downs but these are definite ups.

Doc said he wants to give her one more day to see improvement before deciding the next action. She is off the sedation meds and has had pain only when she is moved. She has refused pushing the pain button each time so it has been managable for her. Doc is specifically looking for no more siezures and her being able to swallow a pill if needed. So we should know more tommorow and now you know what to pray for.

This is my last day with ET. I will be sad to go but what a priveledge to be here for the last week. I spent some time praying with her and she was responding to the things I was saying to her. She has been able to speak one word sentences.

I want to take the opportunity here to say thank you for all your support to ET. None of this would have been possible without the network of family and friends that have been here for her...especially those who have committed Elizabeth to God in prayer. There is no greater priviledge that to pray.

May God's will be done soon...

Brother Mikey

Tuesday, 7/24 - morning

It's Tuesday, 24 July, 0700. I was awakened by the nurse at 0500 as she came in for a med check and to reposition ET. I got up to wash out her mouth and talk with her, only this time her eyes opened wide and she was responding much more. She actually answered "yes" and said "really" several times. She said she could see clearly. She was awake for about an hour and drank some water from a sponge. She is still very tired and wanted to sleep some more. It's looking to be a better day already!

Brother Mikey

Are you feeling lucky, punk?

Don't mess with ET.

She's breathing better, and seems to be back on track. The new meds should be in for tomorrow, and we're looking forward to talking with her again as soon as she regains consciousness. But she's missed two days of supervising things that needed to get done - man, will she be pissed. Everybody better get ready to duck...

--jimmy

Beautiful inside and out

In my four days in Syracuse, the one thing I kept hearing is how many people Elizabeth has touched. She is so loved by everyone in her circle. It doesn't surprise me because in every way imaginable she's one of the most beautiful people I know.

Thanks to Candy of SPG for dropping off photos from ET's cubicle. The photograph of Barbara and Elizabeth above is maybe 15 years old - a picture of health. There is no accounting for things. I'm ugly, reclusive, don't exercise enough, smoke cigars and drink too much - I'm beginning to think my chances are pretty good.

Today's CAT scan verified that the siezure did not cause any hemorrhaging of the brain, which was good news. But the "good" part stops there - ET had a lousy day. Although she did become more responsive, she's begun having difficulty breathing, and the outlook is not a good one. Basically, the cancer is affecting her body's ability to perform normal functions, including breathing.

The doctors are changing her siezure medication to increase her chances of regaining consciousness. And they are doing everything possible to make her comfortable. Radiation has stopped for now, until things stabilize.

At this point, we pray for miracles.

--jimmy

Stop dropping safes already...

This is a cartoon I drew when ET was first diagnosed - then un-diagnosed - then mis-diagnosed - then finally diagnosed. It seems she can't get a break. Just when things seem to be going well, someone drops another safe on her head. Won't they just run out of safes soon?

ET's status has not changed. She has not awoken from Saturday's siezure. We've learned, however, that the progression of sensitivity/pain has reached her head. The worst part of this post-siezure period is that she can't communicate effectively - there is some communication, but its not like she can just say "ouch - stop doing that". We'd been washing her face with a warm washcloth, thinking that she was responding positively, but it turns out (thanks to Jody's intuition) that it was painful for her. So we have to be careful how we interact with her physically for now.

Radiation has been postponed for now. She's on anti-siezure medication that's keeping her pretty groggy. She's getting a CAT scan today to determine whether there has been any progress in fighting this. After that, a neurologist will see her and come up with a plan for getting her off these meds so she has a shot at regaining full consciousness, while at the same time doing something to prevent further siezures.

One step at a time. One careful step at a time - looking up all the while to avoid those falling safes.

--jimmy

Rewind

When we were kids growing in an old house in Haverhill, Mass., ET and I used to share a bedroom. It was a large room just over the first-floor kitchen, and in fact used to actually be a kitchen when the house was divided for two families. It had an old wooden refrigerator built into the wall - the kind that used to work with dry ice. It had kitchen cabinets, a countertop and sink. Best of all, it had its own back stairway and entrance. We used to have a blast in that room.

Last night was the first time I've slept in the same room with ET since those days. She had a restful night, and continues to sleep. Its unclear whether she's sleeping because of the anti-siezure medication or just as a result of the siezure itself. One thing is for sure - right now she just needs the rest.

Last night I kept thinking how much I wanted to go back to that room in Haverhill, Mass. I want to rewind this and erase it all. Sneak down that back staircase and go cause some trouble. She'd be up for it, I'm sure. Then she'd blame it all on me. Ha!

Throughout the day and night, there is such a parade of nurses coming in and out to adminster meds that I must admit I was a little leary of falling asleep in the hospital bed. I'm so skinny I could easily be mistaken for a long-term patient. So I pasted a sign on myself - NO SHOTS PLEASE!


Let's pray that ET gets her much-needed rest, and then wakes up refreshed to continue this fight.

--jimmy

A flair for the dramatic

With her signature flowing red hair, ET never had to rely too much on drama. She could stun you just by walking in the room. So when she shaved it all off in the middle of her chemo program, it was a huge emotional loss (which she accepted gracefully, of course). In lieu of going to the hairdresser, she began going to the salon for pedicures - a luxury she'd never have dreamed of. Gawd she has beautiful feet! I snapped this picture after she'd returned to her room from radiation treatment yesterday - the technician couldn't get over how pretty her feet were. They look like porcelain.

Today was a pretty quiet, routine day - a little too routine for Elizabeth's taste, it seems. For the first time since I've been here, I took a solo shift with ET at the hospital. Jody and her daughters Jennifer and Elizabeth relieved me at the hospital so I could run home for dinner. That was when the drama started - ET had a seizure. She's fine now, and resting comfortably. Its a natural progression with this type of cancer, and they've begun to administer meds to prevent it from happening again. I'm glad Jody was here - she's a seasoned vet and I'm just a rookie.

ET and I had been talking earlier about potentially going for a "walk" tomorrow to the third-floor outdoor observation deck. Let's hope she's feeling up for it.

--jimmy

Friday, 7/20

Today was a great day for Elizabeth. She was alert most of the day, sitting up and greeting visitors with her usual cheer. Her vision has returned, and she verified that I am still, indeed, her best looking brother. Younger brother.

After her radiation treatment at 3pm, she wanted to "go for a ride". So we had her transferred to a wheelchair, and we took her and her entourage (oxygen tank and IV cart) on several laps around the first floor.

Hey, the weekend's here! Two days with no radiation. I'm thinking she'll be partying all weekend, and pay dearly on Monday when its back to the grind.

ET will have 6 more treatments, and then they'll send her home. And that will be a great, great day - something to look forward to.

--jimmy