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
Saturday, January 29, 2011
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)Friday, January 21, 2011
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!
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!
Monday, January 17, 2011
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
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
Sunday, January 9, 2011
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
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
Thursday, January 6, 2011
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
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
Wednesday, January 5, 2011
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
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
Monday, January 3, 2011
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
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
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