Thursday, December 30, 2010

York Christmas Group Photo

Just wanted to share the picture from the York Christmas last Sunday in Greenwood:

Also, blood work was good today, so chemo should happen Monday, Tuesday, and Wednesday of next week as planned.  Dr. Rixe pushed it back a little so Mom could enjoy all of her company.  He said it was his Christmas present to her.  A good one at that!

Happy New Year!
jk

Sunday, December 26, 2010

Merry Christmas!

 People have been asking, "How's your mom?" and my answer has been, "She is amazing!"  She has been thoroughly enjoying this holiday season, and, with a little help from her merry band of elves, doing everything from sewing homemade purses for her teacher friends, to baking holiday goodies, to making blankets for her grandkids, to shopping downtown, to fixing meals for 12.  She is AMAZING!

Many of you may know, but on December 22, we got the best news: the tumor has again shrunk, which means that her treatments can continue apace.  With the new combination of drugs and the rare nature of her tumor, success was anything but guaranteed, but Dr. Rixe assured her that things were going well.  He even said she could celebrate with a little wine over the holidays, under the following conditions: "One glass a day, and as long as it is French."  I'll drink to that!

Below are a few pictures of the Amazing One on Christmas Day.  Today we are off to Greenwood to celebrate with the Yorks!  Best wishes to all of you and thank you for your continued thoughts, prayers, love and support.

 Mimi Rosie and Jonathon (Jonathon is sporting the blanket she made for him).

 Grandma Rosie helps Esphyr open her new tea set.  It sings "I'm a Little Teapot"-- but only when you tip it over and pour it out, as we discovered.  :)

 Sonny sports his blanket, cape style.  And below, the grand girls have a tea party on Lola's blanket.  Further below is a little video of Sonny trying out his new game with Allie, Rosie, J, and Harlan looking on.  (There is no sound, so don't worry if you don't hear anything!)

Thursday, December 9, 2010

Back to Dugan Hollow

The chemo went well.  It seems this outpatient arrangement is really much easier.  Every time I talked to them on the phone, mom sounded relaxed.  She knitted, she napped.  She said she took a two hour nap today and remarked that it was really "zapping" her this time, but I think it's good if she can rest.  It seems like during the summer when she was doing both the chemo and the radiation, she was zapped but couldn't even rest.  So hopefully this resting will be healing.

She sounded happy to be home.  I look forward to seeing her!

Stay warm,
jk

Wednesday, December 8, 2010

Rockin' the Chemo

Blood work was good Monday, so Mom started her second round of her second course of treatment yesterday.  It's a three day deal, so she has another dose today and a third dose on Thursday.  They decided to stay over in Cincinnati to maximize rest time and minimize time on the road.  Amen to that, I say!

Wednesday, December 1, 2010

Checking in with the Good Doctors

Mom, Dad, and Ms. Annie went to see Dr. Rixe today.  He said, "You look strong!  You look good!"  He seemed pleased with how she was handling everything.  Her blood work numbers were a little off, probably from the cold she has, but nothing to worry about.  They will do blood work again next Monday (Dec. 6) and if all is well, she will receive her next doses of chemo Tuesday-Thursday (Dec. 7-9).  It will be the same routine as last time: outpatient, same meds, etc.

Another little bit of hopeful news is that Dr. Lisle stopped by this evening to check the pressure in Mom's eyes.  It had dropped from 24 to 19.  Now, I don't know what those numbers mean, but Dr. Lisle was impressed.  "I don't want to give you false hope," he said.  "But those numbers are significant."  Dad said he would take hope in any form.  :)

Happy December!
jk

Saturday, November 27, 2010

Rosie's Woods

Wednesday before Thanksgiving we all went to the Shawe and Pope John all school mass, and afterward, Phil Kahn (President of Prince of Peace Schools) and the preschool teachers surprised mom by dedicating the woods to her.  They presented her with a beautiful sign that you can see below in the picture.  It was wonderful and quite emotional, punctuated with comic relief by the two littlest.  Not sure about everyone else, but my tears started flowing when I noticed that the last verse of the closing song was, "Thank you God for Ms. Rosie."  Ay yay yay!

Thanksgiving has been wonderful.  Mom got to join her York family at her sister Jane's.  There were 52 out of a possible 62 people there.  It was great.  I was enjoying myself too much to take very many pictures.  :)  She's had a good holiday, I think.  She was a little tired yesterday but seemed fully recovered today.  Tomorrow the Virginia sisters and their families return home, so we will be sad to see them go.

Warm wishes to all,
jk















Tuesday, November 23, 2010

A Few Pictures

 Playing Top Trumps with Sonny and watching the little girls, all while visiting with nephew, Ben.

 Mom and her nephew, Ben Green.

 The happy couple, off to vote!

Mimi/Grandma with granddaughters, Lola Rose and Esphyr Dorothea.  Two in one rocking chair!  Ha, I just noticed that.

Wednesday, November 17, 2010

Chemo Went Well

Mom is back from her chemo treatments today and last I heard she was resting up ("hibernating," as Dad put it).  Unfortunately, Esphyr has a little bit of a cold and a cough, so we decided to play it safe and keep our germs at home.  But everything went well.  Hopefully, the recovery won't be too bad.  She has 21 days until the next treatment.

Best,
jk

Monday, November 15, 2010

Chemo Part 2, Day 1

I spoke to Mom this evening.  She sounded relaxed and happy.  The treatment took a little longer than expected, but not because anything went wrong, just because she had to have blood work done, then wait for results.  So all went well.  She will be staying in Cincinnati (but with friends, not in the hospital) because the treatments begin at 8am.  It's hard to be in Madison, but I know she has a troop of good supporters (Dad, Nat, Allie, and last but certainly not least, Lola!).  We are holding down the fort here.

Here's hoping Day 2 goes as smoothly,
jk

Sunday, November 14, 2010

MRI Completed

The MRI was successfully accomplished Saturday.  My dad went into the room with her for the first time and said he couldn't believe how noisy it was: "like a jackhammer three inches from her head."  He was impressed with her ability to lie still despite the racket.

They haven't read the results yet, so they'll probably hear more about it Monday.  Mom, Dad, et al leave today (Sunday) around four for Cincinnati.

Thankful,
jk

Thursday, November 11, 2010

Rixe Recap

Mom and her entourage visited Dr. Rixe (the oncologist) yesterday just to get all the chemo plans worked out.  Basically, he plans to try a different combination of drugs.  One of the main differences is that, instead of cysplatin, he will use a "cousin" to it, one that doesn't require the advance hydration or constant monitoring.  Hopefully this will help prevent the sodium imbalances that happened last time around.  Also, it means she will be able to get the chemo doses as an outpatient, which we think will be less stressful all around. 

So she will get an MRI on Saturday and begin her first dose on Monday.  One more on Tuesday, then again on Wednesday.  Take it from there.

Enjoy!
jk

Tuesday, November 9, 2010

Working Puzzles with the Little Girls

Mom had a nice moment with both granddaughters the other day, so I thought I would share it.  This one does have sound.  :)  The other didn't.

Friday, November 5, 2010

Staples Out, Chemo a Go

Mom got her staples out Monday when she went to visit Dr. Theo, her neurosurgeon.  They had a good follow up.  He was glad to hear that she is going to go for a second round of chemo. 

The little girls have been very alert to the removal of the hardware.  When I went up Tuesday morning to check out mom's new do, Lola greeted me with: "MIMI GOT HER STAPLES OUT!  MIMI GOT HER STAPLES OUT!"  And when Esphyr examined the incision up close, she asked, "You took your necklace off, Grandma?"

It's healing so well and new hair is coming back in with gusto.  I know she's going to lose it all again very soon, but it's still nice to see it sprouting so well.

Next up is meeting with Dr. Rixe next Wednesday to go over the exact chemo regimen.  We expect her to start the treatment next weekend or thereabouts.

Much love,
jk

Saturday, October 30, 2010

Ms. Rosie Visits Preschool

 Reading scary stories to her class yesterday.  Here she is singing, "Have you seen the ghost of John?"  One of her favorites.

They were so excited to see her!

 Getting hugs from Ms. Wanda's class.

The banner they made.

 With her co-teacher, Ms. Annie.

 Ready to release balloons for Brok.  See below for a video of the release.

 Ms. Rosie and Colleen Burdette.

(below) The baseball head!  Some of the kids wanted to see her staples, so she showed them.  They were interested.  We counted the other day: 48 total!

Sunday, October 24, 2010

Savoring

Mom has had a great weekend.  All the daughters are now home: Allie arrived Thursday, and Natalie flew in with Lola on Friday.  Harlan came in on Saturday, so we had a full house!  We also had many wonderful visits, including a surprise (to her) visit from Jerry and Bobbi, who drove in from Florida.  So the house was full to the brim with love and good spirits.  Mom is leading the way.  She is strong and getting stronger.  She has been playing Sorry with Sonny, reading to Lola, sorting laundry, doing dishes, taking walks, playing in the leaves with Esphyr.  She loves to joke about her baseball head. 

Her next oncology appointment is Wednesday, but there is little anxiety over it.  Our focus has shifted from the medical side of things to life and the living of it.  And she is doing that with style and grace and sweetness.

Much love to all,
jk

Thursday, October 21, 2010

Home Tonight!

Just wanted to do a quick post to report that mom was able to come home tonight.  I met them as they pulled up and was able to tuck mom into bed.  We had the most wonderful talk.  She is doing amazingly well.  I couldn't help but notice a quote she had taped to the wall (long before any of this started):  "The heart that gives, gathers."  She is certainly proving the truth of those words now.  Ah.  She is such a blessing to so many, but especially to me, today, on my birthday.  She told me happy birthday again as I was leaving and thanked me for being her daughter. 

"It's a hard job, isn't it?" she said.

"Absolutely not," I said back.  "You did all the work."

Lots of love,
jk

Wednesday, October 20, 2010

Not the News We Wanted

Well, mom is okay and stable, but the surgery did not go according to plan.  When they looked at her brain, they were able to see quite a bit of microscopic tumor.  So much so that they decided that surgery was not the cure we thought it would be.  Now it's a whole different game.  Basically, they want her to try chemo again.  That's really her only option at this point.  We're all very disappointed.  Dad said the surgeons were so disappointed too.

It's not the best news, of course, but it's not the worst.  Please keep mom in your thoughts today.  She needs to heal from this as quickly and as well as possible so they can start chemo.  She will probably be in the hospital the rest of the week and perhaps the weekend.  Then they estimated two weeks to recover and back on the chemo regimen.  They may try different drugs that are designed especially for the brain.  There are a lot of unknowns again.  As always, I'll keep you posted.

Monday, October 18, 2010

Pre-Op Today

Today mom meets with the anesthesiologist and gets a CT to map the area where they will do surgery.  She'll stay overnight and be at the hospital tomorrow at 5:30am.  So if you want to be thinking of her, that's what she'll be doing.  :)  The CT is today around noon. 

Happy day, everyone,
jk

Thursday, October 14, 2010

It Went Great!

The PET scan was clear!!!!!!!!!!!!!!!!!!!!!!!!!!!!   That means no spreading of the tumor.  Surgery is scheduled for next Tuesday, which in the medical world is right away.  More details soon...

Tuesday, October 12, 2010

PET a Success!

Mom was awesome today.  She was calm and focused for the whole PET scan procedure.  She did not move at all while in the scanner.  I got to hold her hands for most of the time.  After she was done, she said, "I'm so proud of me!"  We all were!  Luckily we had a big team to help celebrate: Tom, Melinda, and mom's sister Jane were part of the entourage as well.

I asked her if she was ready to do it again tomorrow, and she said yes.  "I feel good."

Hooray!  Mission accomplished.  Stay tuned for tomorrow's episode: Pre-Op with Dr. Zimmer.

Sunday, October 10, 2010

Try, Try Again

Last week was a bit of a doozie.  So we're hoping for smooth sailing this week.  PET scan Tuesday, meeting with Dr. Zimmer, the surgeon, Wednesday.  Mom has had a good couple of days.  She even said she was "looking forward" to these next appointments.  So keep those rays coming.

We'll be sure to post once we know something.

Thanks for the love,
jk

Thursday, September 30, 2010

Hallelujah!

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

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

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

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

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

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

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

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!

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

Tuesday, August 31, 2010

Dancing and Singing

I would just like to report that Mom was actually doing a (little) dance around the kitchen before she left for radiation today. She was singing, "Keep your eyes on the prize-- and do it!" over and over. I'm pretty sure that's a Rosie Kelly original. Now it's stuck in my head. :) She said, "You know I must be feeling like myself if I am singing and dancing." Amen to that!

She must have sensed good news was coming because they told her today that she will actually have fewer radiation sessions than planned. She will be finished on September 9th! (I will double check for that date, but I'm pretty sure.)

That's all for now. I'm off to bed! (In case you are confused by comparing that statement to my time stamp, apologies. My time stamp is off. Not sure why. Any technical assistance you could provide would be appreciated.)

Cheerio,
jk

23 down...

... 12 to go. Mom had a great day Sunday. Sonny and I went up to visit because Esphyr had had a fever. Allie was there. Our dear friend Jenny Neff came to visit, bearing lasagna, her famous cookies, and hats. Mom even felt up to having a cookie. We chatted awhile, then she seemed tired, so we retreated to the kitchen while she rested. Then she got up and joined us! She said she was lonely out there. :) We had fun trying on all the hats and scarves-- of course Allie and I had to try them on too!

Looking forward to #24 today and meeting with Dr. Rixe and his team tomorrow.

Saturday, August 28, 2010

Now for More Details

Sorry about the lack of info in the last post. I just wanted to get something sent out to let you know the status. I'll recap a little on the last couple of days and tell you more about the homecoming.

Thursday I got to drive to Cincinnati to see Mom in the hospital. Both kids went with me. Sonny was allowed to go up and visit. Esphyr played in the courtyard with Auntie Alz. It was a great visit. Mom was cheerful and relaxed. Her sister Jane was also there. Sonny got to tell her all about the start of kindergarten. She had her quilt around her and was looking at the squares again. She ate a great lunch: most of a ham sandwich and a baked potato too. She has been loving sour cream. :)

At one point, she asked Sonny to just put his cheek to hers. It was sweet. Friday she continued to do better and her white blood cell count was going up. So they told her she would probably go home Saturday (today). We raced up to the Farm when we found out she was "on her way," but about an hour later, still no Mom and Allie. I called just to check their status, and they were waiting on a wheelchair-- had been waiting for at least 45 minutes. Finally they were released and arrived back home around 3pm. She was nestled in on the couch when we got there and looked just great. She keeps saying that she is doing better, and it is so true. She was happy to see Esphyr especially since she hadn't seen her for a while.

Her sisters Cindy and Peggy arrived soon after with loads of sodium-rich groceries (and yes, Ryan, that included salty potato chips). Mom dutifully consumed mashed potatoes, Gatorade, potato chips, half a ham sandwich. A few minutes later, she was still hungry, so she had some green beans and kielbasa. Awesome! She had a good visit with her sisters and did not hesitate to let any of us know when she was tired-- she would just close her eyes and rest. At one point, she said, "Those are such happy sounds coming from in there (the kitchen). That in itself is healing."

Speaking of food, if you're on the schedule, Annie Schroeder (our new food coordinator) asked me to post a few reminders: avoid fresh produce, try for organic meat if possible, and if you are inspired to provide a dessert, go for something light, like sherbet (mom's recommendation). Oddly enough, her sweet tooth has been on a bit of a vacation. Even chocolate hasn't sounded great. These treatments really MUST be powerful stuff.

Looking forward to another day of rest tomorrow, then on to tackle Radiation #23 on Monday. Allie and Mom did a high five Friday to celebrate the completion of #22. 22 down, 13 to go!

Peace,
jk

Homeward Bound!

Mom is on her way home as we speak. Hooray!

Wednesday, August 25, 2010

Movin' On Up...

... to the eighth floor. To a dee-luxe room with its own bathroom. So they moved mom back up to the eighth floor. She had been on the seventh, which is "Progressive Care," ie more serious than the eighth. The eighth is where she has her chemo done when she stays over the weekend. They had considered dismissing her tonight, but Dr. Beg (oncology fellow) felt she should stay because of low white blood cell count (which is normal at this stage, but still cause to be cautious). Honestly, I am glad she is able to stay because I would hate for her to be released only to have a relapse. I feel like with the intensity of the treatment she is undergoing, it's not a bad thing for her to have a little extra monitoring. This is coming from the girl who had a home birth, so you know I'm not just pro-hospital for any little thing. ;)

I spoke to Allie this morning. She said mom is still doing well. She is still upbeat, but not quite as talkative as yesterday. She was transported to radiation this morning, too, so we are still on schedule with that. I have yet to receive the evening report, so you'll have something to look forward to tomorrow. I really miss her already. Can't wait to see her again! Another big thing about the eighth floor is that Sonny is allowed to visit there. So hopefully we can sneak up tomorrow or Friday. Allie is still with her.

Three cheers for healing rays and balanced electrolytes!
jk

Tuesday, August 24, 2010

Talked with Mom this Morning

Mom called me this morning!! I can't tell you how great this made me feel. She was so bubbly and talkative. It was as if she had been asleep for a long time and had had really crazy dreams and needed to tell someone about it. She told me all the craziness but laughed about it. And she was reading and rereading the quilt and just loving it and soaking up all the love. She just sounded so much like herself, it was great. It made my whole day. I'm comparing this to when I saw her Sunday, and it was so difficult for her to get a sentence out. Also, her voice had sounded so low-- like her, but an octave down (well, maybe not quite that low). But today, she was back "up." Hooray! The beautiful day seemed to mirror my feelings. I felt so at peace after talking to her.

And it was a good day to celebrate for other reasons: Harlan and Daniel drove off to Bloomington in a stuffed-to-the-gills car with Dad this morning. We saw them off. Esphyr told Daniel to be careful. :)

Lots to be thankful for,
jk

Monday, August 23, 2010

Much Better!

I got to see Mom yesterday, and it was so wonderful to lay eyes and hands on her. It wasn't an infection causing all the trouble after all; it was a sodium imbalance. So she's stable now and doing much better.

More soon...

Sunday, August 22, 2010

Update

Well, as it turns out the infection is more serious than they had originally thought. As they were finishing up running one of the tests on Mom, she had a seizure. They asked if she had ever had a seizure before, and Dad said no. She came out of it fine; in fact, she was more clear than she has been in a week or so. But then she began to slip back into a confused state.

The doctors are working to figure out what the infection might be. They think that it may be a bacterial infection in her blood. They're asking for her electrolytes to be monitored. The latest from Dad is that she is calm and peaceful, but alert, too. She will track him with her eyes if he moves around the room.

Here's hoping this turns out to be a small bump in the road,
jk

Saturday, August 21, 2010

Red Pepper Rocked / Week In Review

First of all a big THANK YOU and lots of love to the Heitzes and everyone else who came to show support for Ms. Rosie at the Red Pepper Thursday. It was an emotional moment for me when I walked in for lunch and saw the line almost to the door and almost every table full. I always knew everyone loved Ms. Rosie; it's just especially nice to see it in action right now. Thank you, thank you, thank you. We love you all, and thank you to those of you who were there in spirit, too. We love you, too!

Whew! There is lots to report for this week. I think I will take it day by day just to make sure I have it straight in my own head.

Tuesday: When Mom and Allie arrived for radiation, Mom went directly to the desk and asked to see a nurse. She said she wasn't feeling well and thought she might be dehydrated. Dr. Guarnaschelli agreed that she was dehydrated, so they gave her fluids and the day off. Also, Dr. G. decided to switch her from Prednisone to Decadron, so hopefully that will help with some of the anxiety mom has been having. The fluids did their job, apparently, because that night she was up every hour to go to the bathroom.

Wednesday: She received her radiation on schedule Wed. morning and drove home from Cincinnati. The Korens were able to visit with her Wednesday afternoon, and she definitely perked up to see Esphyr and Sonny come in. She enjoyed hearing about Sonny's first day of kindergarten. She ate dinner with us but didn't stay at the table for long and ended up eating some potatoes while lying on the couch. Later that evening, she wasn't really responsive, which gave Dad and Allie a scare, but luckily Aunt Cindy was "on-call" and instructed them to check her pulse, which was strong, and eventually they were able to rouse her, so everything was okay, but it was still worrisome.

Thursday: Aunt Ann took mom for radiation. The trip was a little bit rough. Once at Dr. G's office, they did blood work and discovered that mom again needed the day off. They stayed in Cincinnati overnight.

Friday: They discovered that mom has a urinary tract infection, which helps to explain all those trips to the bathroom. It wasn't just the fluids. To be cautious, they admitted her to the hospital to give her the necessary antibiotics and to monitor her hydration. Dad is with her now. He reported that she is settling in and predicted a calm night. I actually feel really good about this because with all that has happened this week, I think it is good for her to be where they can really watch closely to see what she needs. Having three wonderful doctors is great, but it can sometimes be a challenge to communicate between the three. This way maybe there can be some overlap.

Not sure how long she will be there. I'll update the blog as soon as I know anything. Thanks again for all your support, near and far.

Cheers,
jk

Tuesday, August 17, 2010

Two Down, One Chemo to Go!

So the weekend went well. I ended up going Friday (solo) and Sunday (whole fam). Mom was very focused on Friday. In fact, that was her mantra: "I need to stay focused" or "You guys help me stay focused." I'd say she was doing alright. :)

Sunday she seemed more relaxed. As Sonny and I walked in, there was a heavenly sound of chanting. Brenda Templeton had given her some chant CD's and they were awesome. Also, the hospital staff is awesome. They were always willing to answer questions. And mom got to talk to the chaplain and the priest. She also received communion Sunday morning. All that seemed to put her even more at peace. Allie came in Thursday night and stayed all weekend. She is back in Cincinnati tonight and tomorrow with mom for radiation and another MRI.

Mom is tired and resting hard. They met with Dr. Guarnaschelli today, so as soon as I get an update about that, I'll pass it along.

Thanks to everyone who is praying and pitching in. Special thanks this post go to the Heitzes, who are organizing "Red Pepper for Ms. Rosie" Day this Thursday from 10am to 8pm. Hope to see some of you there!!

Love,
jk

Friday, August 13, 2010

Oncologist Visit: Everything is Possible

Our meeting with Dr. Rixe was amazing. Dr. Beg, a fellow, examined mom first, and as soon as he looked at her, he said, "Your eye is back in!" When Dr. Rixe came in, he gave mom some impromptu eye exams, made her read a flier, and she passed with flying colors. He called the results "more than significant...impressive. Outstanding," which in his French accent sounds even more impressive. :) We saw the MRI's side by side (the original and the new one). In the original, the tumor appears to be the size and shape of a large chicken egg and very dense. Now it is about the size of a fig and riddled with holes, like swiss cheese. He said that it's reduced in size by 50%!! And she is only a third of the way through treatment.

We were elated. Dr. Rixe also said, "Now, everything is possible again." A good message. He is lowering the dose of VP16 (one of the chemo drugs). Also, mom will have a new mask made for radiation and a smaller field for the rays, which is good news for her optic nerves.

I'm getting ready to head out the door to Cincinnati to see her. She is in the middle of Chemo Round #2. Allie and Dad are there with her already. I'll give you the news when I return.

Peace,
jk

Tuesday, August 10, 2010

GREAT NEWS!

As mom was getting ready to leave this morning, she wanted me to be sure to post that she felt extremely peaceful, mostly because she can feel the prayers of everyone in this community (and beyond) lifting her up and her family up. She feels so grateful and overwhelmed. She wanted to say that she felt "excited" and "ready to do this!"

And boy, did we get lifted high today. Dr. G. shared the preliminary results of the MRI, and the tumor shrank even more than anyone expected. According to Dad, Dr. G., who is a former ballerina, practically leaped into the room and went straight to Mom. She was almost as excited as they were. Praise the Lord and Hallelujah!

We're not sure what exactly this means for the rest of her treatment. We'll find out more details at tomorrow's meeting with the oncologist. But it can only mean good things!

It's working!!! Keep the vibes flowing and know that we are sending out waves of gratitude in answer.

Peace,
jk

MRI Today

Yesterday radiation went smoothly. It was a simple up and back, and driver-of-the-day Terri Grote reported that the trip went without a "hitch or a hiccup." That's what we like to hear!

Mom was a little "fretful," as she put it, in the afternoon. We had a good talk at the kitchen table and reassured her about a few things. She ate a great Second Lunch. Chicken soup, chicken soup with ri-ice! (Think Carol King.) Swiss cheese was sounding really good to her. After the fourth piece, she said, "I could have had ice cream." I told her it wasn't too late, dished her up a bowl, and she and Esphyr ate Breyer's vanilla (her favorite) together and did "Cheers!" with their bowls.

Today is the big day for the MRI. Paul, Natalie, Jonathon, and Lola will all travel to Cincinnati with Mom. They will be there for the MRI and the radiation. Tuesday is also the day they meet with Dr. Guarnaschelli, the radio-oncologist, so they may get preliminary results from the MRI this afternoon, or they may have to wait until after the tumor board meets tomorrow. Either way, I will keep you posted.

The Kimmels will depart from Cincinnati by train late tonight (well, really early tomorrow). We will miss them so much! Aside from the obvious help that they've been, it's been so nice to have them in town and have lots of cousin time (even if it does occasionally end up in a teensy hair-pulling/shoving match). And of course, J and Sonny have become regular Settlers of Catan players. So we'll miss all that. Luckily we can look forward to their return Labor Day weekend.

Sister Allie returns this week from Portland. We are eager to see her again!

As for the rest of the week: Mom and Dad come back to Madison Wednesday evening for a rest and a break until Thursday afternoon, when there will be radiation followed by the hospital check-in for Chemo Round #2. They will be there all weekend until Sunday night. Hopefully the Korens will get to spend a good amount of time there with them. The Cincinnati support crew is standing at the ready. :)

Happy Tuesday to all,
jk

Monday, August 9, 2010

Big Week Ahead

Well, now Mom has visited Salon Natalie and has a sleek Sinead O' Connor look. Her hair was starting to fall out a bit, and she didn't want to hassle with the longer hairs.

The weekend was restful in the sense that she had no appointments, but the steroids are making it hard for her to relax. She is taking it like champ, though, and put herself to bed last when she felt too tired. She's always been good at that, though, and a joke in our family is to repeat the often-heard phrase of mom's: "I've got to go to bed!" So that habit is serving her well right now.

Yesterday, we presented her with the quilt made by Annie Schroeder and all those who contributed a square. She absolutely loved it, and it was a bright spot in the day, literally, as it is made of beautiful yellows and purples with flowers and butterflies and even spider webs. A perfect garden for mom. Even better, she was able to read all the squares and absorb the prayers and well-wishes of everyone herself. (Picture to come soon!)

Thank you so much to the army of friends and family who continue to bring food, snacks, love, and supportive presence to mom and to our family. We appreciate it more than you know.

Coming up this week, she has her MRI Tuesday which will determine whether doses will remain high or be reduced. Keep your fingers crossed!!

Coming up NEXT week, mark your calendars for Red Pepper for Rosie on Thursday, August 19th. Come out and enjoy good food ("Boo-yah!" says Sonny) while you show your support for Rosie's healing rays.

Much love,
jk

Thursday, August 5, 2010

Rumor Has It...


As mom was walking back to her radiation room today, the nurse mentioned that she might get to lower her doses soon. This is very important news, because the lower doses will give her a better chance of retaining as much vision as possible. The MRI scheduled next week will determine whether enough progress has been made to lower the dose, so we are hoping the trend continues!

In other news, Mom paid a little visit to Salon Jill today! She looks fantastic, as you can see. Dad says she looks like she did in high school. :) Lola was of course begging to be next in line at Salon Jill, but she might have to wait quite a while before cutting off her lovely locks. I appeased her with a front row seat.

Morale is good. Mom was able to spend the morning without her "pirate patch." Her left eye is actually better than her right today, which, when you consider that she could see nothing out of it at the beginning of last week, is phenomenal. So she was in pretty good spirits. Tomorrow is the twelfth day of radiation-- one third of the way through!

Please keep the good vibes flowing. They apparently are working.

Cheers,
jk

Tuesday, August 3, 2010

Natalie Notes

Harlan and I drove mom to get radiation today. She had a good morning and was happy and talkative the whole way up. We got to walk her back to the radiation room to get her settled before her treatment. There is something about seeing and knowing where mom is going to be that is comforting. We also met with her radiation doctors, Dr. Guarnaschelli and Dr. Mackenzie, after the treatment. They were both very encouraged about mom's increase in eyesight. Dr. Guarnaschelli gave her a vision test with a chart in the hallway. Mom could read letters on the chart with both her right and left eye. Before she couldn't read anything from a chart right in front of her. The left eye was about 20/50 and the right was slightly better. We were all surprised, even mom. They also felt like the swelling on her face was going down and commented on being able to see the bridge of her nose. We stopped by Dr. Lyle's office on the way home. He also had good things to report. So far the inside of her eye continues to look healthy. The radiation treatments do continue to make her real tired, but that is expected. She can tell a difference in her energy level from the ride up to having it "zapped" out on the way home.

I have been cautious about feeling excited about how things are going, but it was very reassuring when Dr. MacKenzie said, in a very assertive tone of voice, "This is progress." So I will hang onto those words with a happy heart until the next evaluation next week.

Thank you, thank you for all the love and concern for our mamma.
Natalie

Monday, August 2, 2010

Great Weekend...

... and today we were back at it. Mom had a great two days off. She visited with lots of folks. She initiated a game of cards! She ate well. And today seemed even better. She drove to radiation and back. Her vision continues to gradually improve. Today she said she could see faces and even expressions. She is still resting lots (which is good) and taking things very, very easy. I've been so impressed with her attitude and her willingness to listen to her body.

Thank you, thank you, thank you everyone for all the kind words and especially the good thoughts! Keep it up!

Hope you and your families are all well. In the words of the infamous Tommy Kelly, "Take care of each other."

Cheers,
jk

Friday, July 30, 2010

The Eyes Have It

Mom's vision was a little better this morning! Hooray! That probably means the tumor is shrinking. The alternating overnight plan worked beautifully the first go round. Natalie drove her in today. They should be getting home soon. And then... (drumroll) a weekend off to recover! More hooray!

Thanks for checking in. We'll keep you posted.

Much love,
jk

Thursday, July 29, 2010

Good Days



Mom has had a couple of good days. She was up and talkative before setting out for Cincinnati yesterday. She ate well. My in-laws are in town, and she had a good visit with them. They are trying out a new schedule of radiation in the afternoon one day, stay overnight, radiation in the morning, then home. That minimizes the driving time (which seems to wear her out-- as it would me or any healthy person!). So we'll see how it goes.

Also, more good news: Dr. (Tom) Lisle checked her eyes this week and even though her vision is still limited, the eyes seem to be in good shape. So we are hoping it is just pressure from the tumor that is causing temporary loss of vision and not permanent damage. That seems to be the case.

Stay tuned and thanks again for all the good energy. It must be working!

Cheers,
jk

Monday, July 26, 2010

Recap


Just to review what we know so far (in case some of you are just joining us): on June 24th, we learned that my mom had a tumor in her sinus. After the biopsy, she was officially diagnosed with SNUC (Sinonasal Undifferentiated Carcinoma), which is a rare, aggressive tumor. It is not unknown, however; Dr. Zimmer, Mom's otolaryngologist at UC, said that he sees about five cases a year. Even though the odds aren't exactly in our favor, he feels that this cancer can be beat. The goal of radiation and chemo is to shrink the tumor off of any surrounding structures so that they can operate. That's what we're pulling for! Since treatment has started, we are all feeling much better about things. As Sonny said, "I hope they do a good job zapping!" Amen to that.

Round One of Chemo Done

Just got home from Cincinnati after tucking Mom in at the Templeton's. She finished her last dose of chemo around 9:00 tonight and decided not to stay over in the hospital. She and dad both thought she would sleep better that way. She was tired for sure but had enough energy to hug everyone and be amused about the granddaughters who just wanted to bounce on her bed.

Dr. Ricks said she was doing great! She didn't throw up at all (which is rare). They will relax in Cincinnati in the morning and go for her radiation treatment tomorrow afternoon.

Please keep up all the good thoughts. We appreciate everything that everyone is doing to support our family through this.

Much love,
jk

Friday, July 23, 2010

Port is In!

They put the port in this morning, and mom said it wasn't bad. She feels a tiny bit sore, but nothing major. They decided to hold off on the PET scan since she is already doing so much today. They will start the first dose soon.

Dad is doing well as Support #1. As he said, "We're getting Cadillac treatment at full speed on pretty smooth roads." :)

More soon,
jk

Healing Rays

Yesterday, as she was getting ready to go to Cincinnati for her first session of radiation, my mom said, "Today is my first day of healing rays." I loved that image and plan to keep it in mind throughout this marathon of treatment.

Speaking of which, the first round of radiation went quite well. Sister Natalie reported that the whole thing was over in about fifteen minutes. To our surprise, they decided to admit mom a day earlier than we had expected to hydrate her before her chemo treatment which will begin today. She will stay in the hospital tonight, tomorrow night, and possibly Sunday evening, depending on how things go.

We are all encouraged by the swift response of the medical team to her waning vision. It seemed to light a fire under everyone.

Also, Mom gets her PET scan today, as well as radiation session #2. We'll keep you posted. Thank you for all your continued thoughts and prayers. They seem to be working!!

Much love,
jk