The tumor has shrunk 90% (and they couldn't even tell from the image if what was left was a tumor, so in actuality, it could be 100%)!!! Dr. Rixe said he and Dr. Guarnaschelli received a standing ovation at the tumor board yesterday. They had never seen a tumor of this type as big as the one mom had, nor had they seen one shrink so well. Dr. Tanda (an oncology fellow) said one reason for this was that mom was in such good health that they were able to give her "significant" doses of Cis-Platin (sp?) to really knock it out.
Next week she will have blood work Monday and a PET scan Tuesday to rule out the possibility of any spreading. If the PET scan is clear they will move forward with surgery. Dr. Rixe also said that at the beginning of this journey, no one would even think about surgery because it seemed such a remote possibility, and now they would just be going in for a clean up of the little that is left. I cried when I heard all this. Amazing. All those healing rays you've been sending have worked!
He also prescribed some hormones to help with the confusion. Potassium and sodium were both stable yesterday, but the hormones should also help keep them that way.
Three cheers!!!
jk
Thursday, September 30, 2010
Tuesday, September 28, 2010
Big Day Tomorrow
Not much change since the last post, but just wanted to let you all know we will see Dr. Rixe tomorrow, and I'll post tomorrow to let you know what we find out.
Much love,
jk
Much love,
jk
Friday, September 24, 2010
Back Home Again
Mom and Dad are home again! Mom really wanted to come home. She is clearer; it seems the combination of medicines are working. Potassium is stable again. Antibiotic is clearing up the infection. Ativan is helping with the anxiety. And the steroids are keeping the swelling down.
As for all the recent confusion, my aunt Cindy likened the radiation treatments to a series of waves. Even after the treatments, they keep building and finally they wash up to the shore. So that's what this has been. The breaking of the wave. Great analogy, huh?
Cindy also sent some very helpful information about these particular side effects, which to us seem extreme, but apparently are still within the realm of normal side-effects. I wanted to share just a bit of that here:
"Andy is forgetful. Marianne laughs at things that are not funny. John wanders from his front yard and gets lost in the neighborhood he’s lived in for 20 years. Patients with brain tumors can experience many changes in their usual ways of thinking and behaving. There can be subtle changes — they may just seem "different" somehow. There can also be dramatic changes — outbursts of anger, extreme personality changes, inability to remember important events, or bizarre speech patterns.
"Size and type of tumor
If a tumor grows very quickly (Mom's is fast-growing), such as with glioblastomas, healthy brain tissue can be more easily destroyed from pressure and swelling associated with the tumor. Patients with these tumors are more at risk for personality and behavioral changes. Slow-growing tumors, such as pilocytic astrocytomas, may not cause as much impairment because their slow growth enables the brain to compensate for the tumor.
"Methods of treatment
Radiation therapy can produce acute (sudden) changes, usually as a result of the brain swelling from the radiation, much like a sunburn. The patient might experience headaches, irritability, and vomiting. Later, even weeks after radiation therapy has been completed, patients might experience fatigue, loss of energy, and sleepiness. These symptoms can contribute to a patient feeling and acting differently."
Okay, it's me again. One closing note: in order to keep everything as low key as possible, Dad is thinking that we should limit visitors at this time. I may sneak up tomorrow for a short visit, but we probably won't visit as a whole family for at least a couple of days (maybe weeks, depending on how she feels). So keep your healing rays focused her way, and we'll see you soon. :)
As my friend Heather says, light and love,
jk
As for all the recent confusion, my aunt Cindy likened the radiation treatments to a series of waves. Even after the treatments, they keep building and finally they wash up to the shore. So that's what this has been. The breaking of the wave. Great analogy, huh?
Cindy also sent some very helpful information about these particular side effects, which to us seem extreme, but apparently are still within the realm of normal side-effects. I wanted to share just a bit of that here:
"Andy is forgetful. Marianne laughs at things that are not funny. John wanders from his front yard and gets lost in the neighborhood he’s lived in for 20 years. Patients with brain tumors can experience many changes in their usual ways of thinking and behaving. There can be subtle changes — they may just seem "different" somehow. There can also be dramatic changes — outbursts of anger, extreme personality changes, inability to remember important events, or bizarre speech patterns.
"Size and type of tumor
If a tumor grows very quickly (Mom's is fast-growing), such as with glioblastomas, healthy brain tissue can be more easily destroyed from pressure and swelling associated with the tumor. Patients with these tumors are more at risk for personality and behavioral changes. Slow-growing tumors, such as pilocytic astrocytomas, may not cause as much impairment because their slow growth enables the brain to compensate for the tumor.
"Methods of treatment
Radiation therapy can produce acute (sudden) changes, usually as a result of the brain swelling from the radiation, much like a sunburn. The patient might experience headaches, irritability, and vomiting. Later, even weeks after radiation therapy has been completed, patients might experience fatigue, loss of energy, and sleepiness. These symptoms can contribute to a patient feeling and acting differently."
Okay, it's me again. One closing note: in order to keep everything as low key as possible, Dad is thinking that we should limit visitors at this time. I may sneak up tomorrow for a short visit, but we probably won't visit as a whole family for at least a couple of days (maybe weeks, depending on how she feels). So keep your healing rays focused her way, and we'll see you soon. :)
As my friend Heather says, light and love,
jk
Wednesday, September 22, 2010
A Little Better
Spoke to Dad yesterday morning. Mom had had a good two hours or so of clarity in the morning, then got a little foggy. Dad called again later in the afternoon. Mom had taken a good long nap and was feeling very clear. I even spoke to her and we had a nice conversation. She sounded like herself! So that's the good news for the day. I feel very encouraged by this because it means that (a) some of the medicines might be working, and (b) with rest, she seems better, which might indicate that all of this discombobulation (that's the word I was looking for last time) is in fact a temporary condition and will improve with rest and time.
So we're feeling encouraged and wanted to pass that along. Will post again after I talk to Dad today.
Cheers!
jk
So we're feeling encouraged and wanted to pass that along. Will post again after I talk to Dad today.
Cheers!
jk
Tuesday, September 21, 2010
Back to Cincinnati
As some of you may already know, this past week has been pretty rough. Mom has been a little out of it-- confused isn't exactly the right word. But at least most of the week, she was eating well and fairly content. Dr. Rixe decided to reintroduce steroids on Friday, thinking they would help reduce any swelling in the brain and therefore help clear up her thinking a bit. It seemed to be working. She even ventured out of the house and paid us a visit at our downtown house, which was a rare treat. She seemed more lucid than she had been Friday and Saturday. Her interactions with the kids were just beautiful.
But yesterday and today, she wasn't wanting to eat. She had blood work done and her potassium was low, so they gave her something for that, and then she had another urinary tract infection, so they gave her something for that as well. But she hasn't wanted to take her meds either, so tonight, dad decided it would be best to head back to Cincinnati so they could help and monitor her in the hospital. He's worried that she may have more seizures (as she did after the second round of chemo). I am relieved that they will be supported by the wonderful UC staff. This stuff is no joke. It's impossible to go it alone, so I am glad they are not trying to.
They are en route to the hospital now. I will post again as soon as I know more.
Love to all,
jk
But yesterday and today, she wasn't wanting to eat. She had blood work done and her potassium was low, so they gave her something for that, and then she had another urinary tract infection, so they gave her something for that as well. But she hasn't wanted to take her meds either, so tonight, dad decided it would be best to head back to Cincinnati so they could help and monitor her in the hospital. He's worried that she may have more seizures (as she did after the second round of chemo). I am relieved that they will be supported by the wonderful UC staff. This stuff is no joke. It's impossible to go it alone, so I am glad they are not trying to.
They are en route to the hospital now. I will post again as soon as I know more.
Love to all,
jk
Wednesday, September 15, 2010
Rest, Rest, Rest
Got to see Mom yesterday. I went up early for Chestnuts practice, and mom would whoop and holler every so often from the couch in the next room when she heard an ending or a chorus she particularly liked. She was hungry by the time we finished and helped coordinate the dinner proceedings, instructing me when to check on the roast and so on. She ate well (in installments, returning to the couch when she needed to). She really enjoyed Esphyr and Sonny when they came up to join us. Oh, and emeka, too, of course.
She is feeling quite nauseated these days, which is to be expected, but is nonetheless unpleasant. Still, we prefer "normal" side-effects to special, unusual ones! She's also been a tad forgetful, but then, who isn't? I forgot where I put my purse today and found it in the stroller where the baby should have been.
Now the game is to rest as much as possible. The next MRI/oncologist meeting is scheduled for September 29th. Keep those healing rays of good energy flowing her way in the meantime. And thanks again for everyone's kindnesses, large and small.
Much love,
jk
She is feeling quite nauseated these days, which is to be expected, but is nonetheless unpleasant. Still, we prefer "normal" side-effects to special, unusual ones! She's also been a tad forgetful, but then, who isn't? I forgot where I put my purse today and found it in the stroller where the baby should have been.
Now the game is to rest as much as possible. The next MRI/oncologist meeting is scheduled for September 29th. Keep those healing rays of good energy flowing her way in the meantime. And thanks again for everyone's kindnesses, large and small.
Much love,
jk
Saturday, September 11, 2010
Homecoming
Mom waved to her supporters as she walked up to the house yesterday with the biggest smile on her face. Dad came up to meet her and escorted her in. Lola got a big kick out of the whole thing. I think she thought the gathered crowd was her adoring fan base. "Hi, guys!" she said, waving extra big, decked out in pink leotard with rhinestones and matching tutu. So cute.
Mom did go straight in to lie down, as promised, and she has been resting well ever since. She had a good day today of enjoying the grandkids and the Virginia daughters before their departure this evening. She felt queasy much of the day, but she still ate fairly well. I think it's easier to bear knowing that the treatment is now behind her and the rest is downhill. She has a nice cache of meds, too, that she uses sparingly, but she does use it when she needs it, which we all encourage. If there were ever a time, this is it!
She went to bed a little before nine and promised that if she needed anything she would ring the bell, but she didn't think she'd need to. The last I heard from her was her blessing me when I sneezed from the next room. :)
Here's hoping tomorrow is even better.
Thanks and thanks and thanks again for all the cheerers, near and far, in person, by card, by note, by email, in spirit, everywhere!
Love from all the Kellys,
jk
Mom did go straight in to lie down, as promised, and she has been resting well ever since. She had a good day today of enjoying the grandkids and the Virginia daughters before their departure this evening. She felt queasy much of the day, but she still ate fairly well. I think it's easier to bear knowing that the treatment is now behind her and the rest is downhill. She has a nice cache of meds, too, that she uses sparingly, but she does use it when she needs it, which we all encourage. If there were ever a time, this is it!
She went to bed a little before nine and promised that if she needed anything she would ring the bell, but she didn't think she'd need to. The last I heard from her was her blessing me when I sneezed from the next room. :)
Here's hoping tomorrow is even better.
Thanks and thanks and thanks again for all the cheerers, near and far, in person, by card, by note, by email, in spirit, everywhere!
Love from all the Kellys,
jk
Friday, September 10, 2010
Line the Finish Line!
It has been an intense but good week. Chemo and radiation every day, schedule changes, blood transfusions, you name it. But mom had a great attitude and is feeling great. She, Natalie, Allie, and Lola are enroute home right now and are about an hour and twenty minutes away. If you want to meet us up at Paul and Rosie's house on Dugan Hollow, bring a lawn chair and we will line the drive and cheer her on as she enters. Don't plan to stay; we love you, but she'll need to rest when she gets home. :) But wouldn't it be great to show her all our support as she crosses the finish line? Call me if you need directions or have questions: 812.599.0611.
Thursday, September 2, 2010
Dr. Rixe Says
First of all, make sure you check out the previous post, which is from Natalie, with the pictures of the quilt. We were posting at the same time, but I finished a little later, which bumped it down. So take a look!
Now: I haven't had a chance to sit down and write about Wednesday's meeting with Dr. Rixe et al, so here goes. It's actually very exciting because he mentioned that there are three possible outcomes for treatment: 1) the tumor will be operable (yay!), 2) the tumor would be inoperable (boo!), or 3) the tumor would be inactive, and thus virtually eliminated. There would still be tissue remaining but no active cancer cells (YAY!). The third option has never been mentioned before, probably because no one expected her tumor to respond so well to the treatments. Mom was really excited about that possibility when she told me about it. Her whole face lit up.
The other thing that came out of the meeting with Dr. Rixe is that the final round of chemo, which was to occur starting tonight, will actually happen next Tuesday. Basically, he just wants to give her a few more days to rest before they begin. She will finish her round of antibiotics from her hospital stay on Friday, 9/3, so he probably just wants to give that a chance to complete whatever work it needed to do and get her in the best possible shape for this last go round. She spent the night tonight in Cincinnati and will probably be home around 1pm after her radiation tomorrow, which will give her a good start on a restful long weekend. No radiation Monday.
Looking ahead, she will have an MRI in four weeks as well as a PET scan to determine the outcome of this course of treatment. Then we'll know whether we have #1 or #3-- #2 can just go its way.
I should be accurate now with my time stamp (thanks, Ryan!!).
Much love,
jk
PS Leah Ott wrote to me that they lit a candle for Mom in the cathedral of Notre Dame in Paris. Pretty cool! Thanks, Otts!
Now: I haven't had a chance to sit down and write about Wednesday's meeting with Dr. Rixe et al, so here goes. It's actually very exciting because he mentioned that there are three possible outcomes for treatment: 1) the tumor will be operable (yay!), 2) the tumor would be inoperable (boo!), or 3) the tumor would be inactive, and thus virtually eliminated. There would still be tissue remaining but no active cancer cells (YAY!). The third option has never been mentioned before, probably because no one expected her tumor to respond so well to the treatments. Mom was really excited about that possibility when she told me about it. Her whole face lit up.
The other thing that came out of the meeting with Dr. Rixe is that the final round of chemo, which was to occur starting tonight, will actually happen next Tuesday. Basically, he just wants to give her a few more days to rest before they begin. She will finish her round of antibiotics from her hospital stay on Friday, 9/3, so he probably just wants to give that a chance to complete whatever work it needed to do and get her in the best possible shape for this last go round. She spent the night tonight in Cincinnati and will probably be home around 1pm after her radiation tomorrow, which will give her a good start on a restful long weekend. No radiation Monday.
Looking ahead, she will have an MRI in four weeks as well as a PET scan to determine the outcome of this course of treatment. Then we'll know whether we have #1 or #3-- #2 can just go its way.
I should be accurate now with my time stamp (thanks, Ryan!!).
Much love,
jk
PS Leah Ott wrote to me that they lit a candle for Mom in the cathedral of Notre Dame in Paris. Pretty cool! Thanks, Otts!
The Prayer Quilt (Pictures)
These pictures of mom with the beautiful quilt were promised, so I wanted to make sure I kept my end of the bargain....since they were on my camera. It seems as if the quilt and the prayers have been such a wonderful comfort to mom. Thank you , thank you Annie! This quilt seems to represent a huge blanket of supporters that have wrapped so much love and positive energy around mom. It truly is amazing to see the hearts and lives that one person can touch. It gives me inspiration that one person can make a big impact on this world. Again thank you to all for caring so deeply. All I can say is I love my momma. Go momma, go!
-Natalie
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