Alison - In Loving Memory

[Note 7-15-11 by Jon B -- I uploaded the full movie to my Picasa Web folder and it can now be viewed from the following link:

https://picasaweb.google.com/jbronstein2000/AlisonSlideshow?authkey=Gv1sRgCK-8pbLXiOOj0QE

Christa's slides are still available from her link, should you like to just view the slides (no music) or if you have a lower bandwidth connection and the movie doesn't play well... ]

I apologize for the delay posting the slideshow that was shown at Alison's Memorial Service. I wasn't able to directly put it on the blog but I am attaching a link to my Picasa Web album. You will be able to see all the wonderful photos, unfortunately, without music.

https://picasaweb.google.com/cjoseph8/AlisonPresentation?authuser=0&authkey=Gv1sRgCLzzuYL906miugE&feat=directlink

Celebration of Alison's Life July 10

You are all invited to come together for a Celebration of Alison’s Life on July 10, 2011 at 6 pm. This event will be held at the Brazilian Room in Tilden Park, in Berkeley, CA. For directions, you might use your map coordinates of Wildcat Canyon Road at Shasta Road, in Tilden Regional Park, Berkeley, or try this link http://www.ebparks.org/activities/corpfamily/br/br#directions

Kirk and Dani will have additional details, to follow. I know you are encouraged to bring your fondest memories of Alison to share with all who loved her.
Peace,
Deborah

Our sweet Alison

Alison left us this morning. Kirk says she had been sleeping without awakening for at least a day. She died early this morning with Kirk by her side.

I know Kirk will post something soon about her, and about her memorial service. He'll let us know those details when he has them.

I will look for her spirit when I hear someone laugh, or hear the many songs we loved together, or watch someone dance with joy, or watch someone perform an act of kindness for someone.

I will miss her so much.

Little by little

Alison’s brother and sister (me) and spouses have seen Alison a few times over the past 10 days. She is sleeping more, coming to lucid moments less, communicating more with nods and head shakes than any words. She still seems to understand what is being said, but her ability to communicate out to others is more and more truncated.

It is so heartbreaking to see someone who was so vibrant and life-embracing have all that ebb from her. Her spirit is there, but she has to battle this horrid tumor which has not only robbed her of all independence, but of peace and tranquility as well. Her battle is with episodes of uncontrollable crying. This is just my interpretation, but I don’t think it is an “in-the-moment” emotional reaction to her condition, but the tumor itself asserting itself in those emotional centers of the brain that affect emotion. Talk about a raw deal – a miserable disease that even robs her of being able to be peaceful much of the time.

Kirk and Dani continue to minister to her. She is where she wants to be. She does not seem to be in pain. I hope that when she sleeps that is able to go somewhere light and free…

Update

Mom's condition continues to deteriorate, but she is being cared for and loved around the clock by myself, Kirk, her flow of friends coming to visit, as well as nurses' aides. Currently, we are trudging through a very uncomfortable issue with mom's catheter, which appears to be blocked. We are awaiting the arrival of the on-call nurse which is (quite literally) painfully slow. We are holding her hand, stroking her forehead, giving her kisses, and trying to make her as comfortable as possible in the meantime.

She spends most of her day either sleeping, laying in bed listening to Kirk or myself read her a book (Harry Potter or Janet Evanovich), watching a movie, or sitting with a visiting friend. She can no longer walk. There are many tears from her throughout the day; a symptom, from what I've read and heard, of the tumor. I can only imagine the deep sadness and confusion that comewith such a terrible illness, and how frustrating it must be for someone as verbal and articulate as mom not to be able to explain to herself or anyone else.

I would like to take this opportunity, my first post in a long while, to express my and Kirk's deepest gratitude, thanks, and love for everyone who has helped mom, and us, through this time. Your kind words sent by email, "snail mail," and phone calls touch us all every day. The visits, flowers, food, gifts, and ongoing emotional support make it impossible for mom, Kirk and myself to forget how surrounded by love mom is. It means everything to know you are here with us.

Please continue to call, visit and send your love and good thoughts this way. Every word and every sentiment is deeply appreciated, and returned to you, even if we have not yet had the time to express it.

For my part: my greatest thanks to you, mom's friends and co-workers; I have hardly had a chance to speak to any of you, as many of us have never met. I will never be able to express my gratitude for the love you give her in these impossibly hard times. You are her family as much as I am; it gives me such pride and comfort to know that she is so wonderful, as I always knew, to have made such truly spectacular and good friends in her life.

-Dani

*As a side note: I deleted a comment from the previous blog because it was inappropriate and inaccurate. I will not tolerate passive aggressiveness toward myself or anyone in this house, especially on a blog that is meant for love and well-wishes for mom. Mom is not invisible, and there is not "only one" keeping her loved ones informed about her state of health - she has a stream of visitors, phone calls and mail all week. All anyone who wishes to see her need do is call and help us find a time that will work best for theirs and mom's routine. Mom's is tricky these days, and her windows of opportunity are few, so sometimes it takes us a few tries. But no one should be shy about calling, writing, or working on setting up a good time for a visit.

Thank you all, truly, for your love, positive thoughts, and support.

sending stories?

Jon and I each had a chance to see Alison this past weekend. Her condition is slowly deteriorating as she becomes weaker and with more debility. While I was there, she mostly slept. When she was awake, she could participate a little in conversation, mostly with one or two words to interject or react. Word-finding is so hard that she can’t complete a full sentence most of the time. But she clearly understands well what is said – she takes in language just fine, the problem is in getting the words out.

Kirk has the downstairs set up as her room. She has a hospital bed, and hospital-type amenities as she really can’t get out of bed except with a lot of help. She seems to prefer her eyes being closed –she listens, but it seems like it’s a lot of work for her when her eyes are open. Her appetite is OK, though not as robust as it was even three weeks ago. Kirk has arranged for home health aides to be there for both a day shift and a night shift, so he has that kind of on site support for Alison’s care, light housekeeping, etc.

Sometimes she seems so terribly sad (frightened? Unhappy? Frustrated?), though she doesn’t have the words to really explain why. Some nights are good and she sleeps well, some are fraught with restlessness or agitation. She does like a good laugh, and will chuckle away at a funny story.

I have the idea that she likes to hear the “old stories” – things that happened some years ago, that make her laugh or smile. I wonder if those of you with a good “Alison story” could jot it down and send it to her in a card, so that she can share a smile with you about something that made you laugh or pleased you both? Alternatively, if you want to post your story as a comment on the blog, I’m sure someone will read it to her. While her short-term memory is massively impaired, she has great long-term memory. If you have the inclination, I think your stories might really cheer her up. Thanks so much.

From Sunday 4/17/2011

I had a brief visit with Alison on Sunday. Our Dad and wife Judy came up to see her, as did her niece from Virginia (Lara).

Alison seems significantly more tired and weak. Her sentences are fairly short, and Dani reports that she is having more trouble getting a thought finished. The stairs pretty much exhaust her, so I believe Kirk is planning to get a hospital bed in fairly soon. She barely lifts her feet when she walks, but she walks. Kirk and Dani say that she wants to be able to say her good-byes. She is not in pain. It is just very sad to see her, she is so subdued and fragile.

Hopefully, her niece can provide more details after she finishes her visit. Thank you for posting your comments. It is comforting to me to see the people who love Alison continuing to check in on how she is.

Report from Berkeley

I had a chance to see Alison (and Kirk and Dani) over the past couple of days. My husband and I were in Berkeley to give some in-home support, as it were. Alison seems pretty sad and emotionally fragile, though able to rally and smile and laugh if there are ‘lighter’ things to talk about and share. She was not in ANY pain as of yesterday. She naps for fairly long stretches at a time. She is managing fair-to-middling in terms of walking on a flat surface, relying on her cane and often a human assistant as well. She had experienced problems with coordination of her right arm prior to the UCSF admission, but was using her hand OK when I saw her (though there is weakness). Her main struggle is probably finding words – especially nouns – they are really pesky for her – but also just holding on to a thought from the beginning of the thought to the second half of the sentence. It frustrates her. The people around her are figuring out some coping strategies to decrease her frustration, and help her make her wants and needs known. Then again, there are times she comes up with comments and details that seem quite precise, as in remembering a particular restaurant in Oakland with toys displayed when she was talking with her cousin Hannah this weekend. When her memory is jogged about something, she seems to exactly remember what is referred to. Maybe it’s the fluctuation in how rested she is, or how the steroids are countering any brain swelling, or certain memories might be out of the reach of the damnable tumor. Hospice is bringing in some adaptive equipment. Dani is now home from school, to be near her mom and Kirk. So, if you feel inclined to send a card to the house, I think there are ever-present staff to read them to her!

hospice

Alison was admitted to UCSF over the past few days because of progression of symptoms. She had trouble with finding words and completing sentences, and her right arm and hand were not moving properly. A new MRI shows tumor progression that accounts for the symptoms.

She received another big dose of steroids, and remains on them. This has helped with the word-finding and ability to complete her thoughts, though Kirk reports there are still word-finding deficits. I haven’t spoken to her, but will see her tomorrow to be able to report how much she can read things like blog posts. She isn’t able to use technology devices, as best I can tell, so if she is not responding to emails, that is why. Dani spent the night with her last night, and perhaps can keep her up to date on any messages while she is with her.

The neuro-oncologist at UCSF does not have additional viable treatments to help her, so she and Kirk have elected hospice care as of yesterday.

She is going home today, with Hospice nurse coming out to do the assessment and help arrange for home equipment, like hospital bed and such. Electing hospice means she will forgo treatment looking to battle the tumor, but will receive the wide range of supportive, palliative and humanistic services that this program can offer Alison and her family.

I’ll have more ‘eye-witness’ reports for you all soon.

Love,

Deborah

Pretty tired

Alison had another infusion last week, and the report from her and Kirk is that it really knocked the wind out of her. She seems to be slowly getting some energy back – not sleeping quite as much – but her physical conditioning remains very challenged, and simply climbing a flight of stairs is exhausting her. Kirk is keeping up all the care he does, and he is pretty tired, too. I know that if he asks for your help in some errands or tasks at the house, that he has a wonderful group of people he can turn to. Thanks so much for being there for Alison and Kirk.

Infusion this week

Hi all,

The family gathered this past (rainy) weekend to give Alison and Kirk and little R & R and check-in. She is not sleeping well, so seems pretty tired. Her strength and stamina are diminished, and her vision never got back to pre-surgery levels. So she has some challenges in getting around where there are steps or uneven surfaces. Her emotions are up and down, which - based on poor sleep alone - is to be expected.

Her next infusion of the carboplatin is this week. She did well with the last course, with the only significant side effect being fatigue (and that could have been the meds that counter the nausea). We have our fingers crossed that this treatment will go as well!

Thanks to all of you out there who continue to support Alison and Kirk in your thoughts and deeds!

Deborah

Next step

Alison had another MRI last month that showed some progression, meaning the the clinical trial with the sonic hedgehog pathway drug wasn't working. So she went off that trial (stopped the experimental drug). Her oncologist offered the option of a more standard chemo drug (carboplatin) and she had that infusion latter part of February. She is tired, but otherwise coping well.

Her next infusion will be 3rd week of March.

Sonic Hedgehog

Tonight we had a wonderful dinner with Kirk and Alison (aka Sonic Hedgehog). It was so nice to spend some quality time just hanging out. We had some "hedgehog" treats to share with our girl and she really enjoyed them (much thanks to a staff member of mine who shared them with me). Alison looks amazingly well and is so positive and upbeat. Yeah! Kirk needs a little more rest, but he is so grateful to the "food chain gang" that have been helping to support their culinary needs:) Please keep the love and positive thoughts flowing in their direction. It is so very much appreciated! xo cj

Blog Post From AB Her Own Self…

To my wonderful friends and support system. Nearly a month post-surgery and, generally speaking, doing extremely well. Composing documents is not one of my strengths, so this will be a very short entry. But I thought you might want to see that my recovery is coming along.

Healing and pain management are my main “issues” but both seem to be going well. My brain is starting to improve in functionality (as evidenced by this blog posting) but it still has a long way to go before I establish what my new “baseline” will be. I feel pretty good that my amazing surgeon left me with only a minimal increase in deficits, but there is definitely going to be some change. And all fingers and toes are crossed that this new Sonic Hedgehog treatment will be effective and holds hope for the coming months/years.

Okay, that’s about all I can manage right now but, again, wanted to let you see that I have good reason to feel hopeful.

Love to you all, and keep those good thoughts coming my way.

/ab … (AKA, The Sonic Hedgehog)

Clinical Trial

I got a report from AB and Kirk, they had a big day Tuesday with all the various specialists at UCSF. All is well on that front.

Prior to surgery, the UCSF physicians discussed the options regarding current clinical trials that they are running on glioblastoma patients. There are several in the works. They all decided on this one using the "sonic hedgehog" pathway medication. It happens to be set up that all participants get the trial medication (a pill) - some before surgery, and some (like Alison) after surgery. So she has started the drug, today is Day 4 and so far so good.

It's an interesting drug that targets the molecule that "controls cell division of adult stem cells and has been implicated in development of some cancers" (taken from the Wikipedia site on this, see the link http://en.wikipedia.org/wiki/Sonic_hedgehog). Researchers are very excited that this may be an important pathway to "disrupt" since it seems to be involved in why some adult cells go on to become glioblastoma cells. The news so far is that the drug is well tolerated - what a blessing! Given that standard chemo doesn't have a lot to offer and does have harsh side effects, and given that the Avastin seems to have let the cancer grow, this seems to be a promising option. Those of you with medical backgrounds might want to look at the NCT Clinical Trial site http://clinicaltrials.gov/ct2/show/NCT00980343 or you can look up NCT00980343 (I don't why it says it isn't recruiting because it sure is). Sorry if this all sounds clinical - but so many of us are medical folks, I thought you would be interested.

So, even thought Alison LOVES her sea turtles and other totem animals, I wonder if we shouldn't be looking for some pictures of hedgehogs to send her way! Fingers crossed, prayers on wings, rabbit feet a-rubbed, we are all hoping this is the breakthrough drug we have been waiting for!

A trip to Aptos

We just had a very nice visit from our gal and her guy. Alison is 2 weeks out from brain surgery (as of today) and looks pretty dang good. While sometimes her energy can be low, there are now days (like Saturday) when she can go the whole day without a nap (!). As opposed to her first surgery, she and Kirk know what to expect in terms of high dose steroids, energy levels after surgery, and of course pain management. I am happy to report that she seems to be managing the headache issues really well - she is still on some regular pain meds and using some meds for "breakthrough pain", but needing less of those every day - and her physical strength and mobility seems to be really good at this point. She wants to keep up with her walking and strengthening exercises, and is committed to keeping active.

She thinks she is still recovering in terms of that right-sided visual loss, which may be a bit more pronounced than pre-surgery, and it may be the reason that it is hard for her to read and track sentences. But her mood seems positive, her spirits are strong, and between us we can remember most of the words to our favorite songs (and she is singing!).

She has a slew of appointments tomorrow at UCSF (neuro-oncologist to talk about the clinical trial, neurosurgeon, and the plastic surgeons to start taking the stitch-work out of her head - which does look excellent, btw) and I hope to have some specifics to share about the clinical trial. At this point, what we know is that it is a small trial looking at an oral medication that targets the tumor on a whole new metabolic pathway, the "sonic hedgehog pathway" as it has been dubbed. Now that your curiosity is peaked, I'll fill you in when we know more.

For today, Alison and Kirk are taking advantage of beautiful, appointment-free day to go to the Monterey Bay Aquarium with Dani, where Alison will commune with her beloved sea turtles, as well as otters, jellyfish, and seahorses. What a great place to be on Day 15 post op, literally and progress-wise!

Deborah

Recovering at home

I talked with our gal last evening, and she is doing pretty well. She is still plenty tired, taking lots of naps and sleeping well at night. Her energy is low, but that sounds about right after a big surgery. Pain control seems to be going well. When I talked with her, she was having a bit more of a problem finding words than before the surgery, and Kirk says it is still hard for her to read. But other than that, she seems to be making a good recovery. And she understands when she is read to just fine. Many thanks to those of you who have sent cards and messages; she does get them!

Her incision is the same as last time, kind of a big horseshoe shape around the left cranium. Because she was on the Avastin, which can interfere with healing, the neurosurgeon requested that the plastic surgery team come in to do the skin closure. No staples this time, but she has quite a lovely quilt-work-type closure - I thought the NICU nurses would be interested to hear that (kind of resonates with your incredible quilt gift to her! Your quilt is obviously much more beautiful!). Kirk and I are NOT allowed to take any of those stitches out - the Plastic Surgeon was oh so clear that nobody but HIM was to touch that. Alas, it does add more follow-up appointments in her schedule.

More news as we know it, but for now, she is "coming along" nicely.

Love,
Deborah

Home today

Check out Chris' comment on Christa's post from yesterday - it says it all!

Alison looked really wonderful when I got there yesterday late afternoon. Evidently, she had had some tough times in the morning with pain/nausea, but by the afternoon, all that was behind her, and she looked GOOD. The cocktail to the pain management was really proactive this time, as was other aspects of the post op care, and it seems to have made all the difference. With her pain managed, she was always ahead of the curve. I knew, when she started singing bits of songs because the conversation contained a possible reference to a lyric that we were in fabulous shape. (Do check out Chris' comment, it's a classic response to this particular Bronstein gene that we all share...)

We have to shout out to the nursing and ancillary staff at UCSF on 8 Long, especially to Stacy, David and Alice. If you ever have the misfortune to need to be hospitalized for a neuro problem, let us tell you: that unit is a great place to be. The folks could not have been warmer, kinder and obviously competent in their care of Alison and her attendants. Talk about people being called to a healing profession - our deep gratitude for your care.

So, Alison headed home this afternoon, with high anticipation of sleeping without interruption for vital signs and neuro checks. We're all crossing our fingers and sending good thoughts for a continued smooth recovery.

Love,

Deborah

Just spoke with Alison and Deborah. Alison sounds AWESOME! Hope is she will come home tomorrow. Keep the goods thoughts!

Doing well after surgery

Alison moved out of ICU yesterday, now is in the Neuro unit and doing well, per the report from Kirk last night. She seems to be doing (mostly) well with her regimen of pain medications and anti-nausea medications. She has all of the various tubes out (except for the drain from the surgery incision) and is moving well, communicating well, and generally seems way ahead of where she was compared to the surgery 13 months ago.

They spoke with one of the neuro-oncologists - he looked in on her, since Dr. Chang is out this week - to update how she is doing; once cleared from this surgery, she will be on a clinical trial with a new anti-glioma drug that shows real promise. I'll update you all on that once Alison is farther along in her post op course. The trial involves using this new drug for patients who had to have a second surgery to treat their tumor recurrence/progression.

I'll have more for you tomorrow. I'm going to UCSF later today for Alison-Watch. I'll give her lots of kisses from all of you!

Love,
Deborah

Surgery today at UCSF

Alison had surgery today, and it went well. The surgeon described the procedure as one where he removed both the 1 cm area that had grown near the prior tumor, as well as the surrounding area that was becoming more prominent on the MRI scans. He described this to Kirk as completely removing "the tumor" plus the area of enhancement around it that showed up on the MRIs; it isn't entirely clear what this area of enhancement is (?tumor, old blood, necrosis from the Avastin?), so we will wait to hear what the formal pathology report is. It takes a few days to have the tissues prepared and the report back. The surgeon felt confident that this new surgery won't impact Alison's brain function negatively, meaning it won't take anything away how she was seeing/hearing/moving/thinking prior to surgery. That's a big deal, because the surgery is quite an ordeal to get through, and he wanted to let us know he didn't have to harm any healthy brain tissue.

Whit and I saw her in the Neuro ICU, where she was speaking quite coherently (and actually was quite cute in her responses!) but obviously had one heck of a headache. The ICU nurse was monitoring all the critical things carefully, especially pain and nausea, and staying on top of those symptoms with liberal doses of medication. We do love our ICU nurses, don't we! So the task in the next days is to get the pain under control. She'll have an MRI within the next 24 hours for the new post-surgical "baseline". But for someone who just had a big ol' surgery, she looked remarkably good - good color, very appropriate and sweet in her responses.

She's got Kirk and Dani and Dani's BF Matt there this evening to feed her ice chips and keep an eye on her. So far, so good - we'll keep you posted as she progresses. And be sure that she appreciates all your messages of love and support - thank you for keeping her in your thoughts!

Love to all,

Deborah