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.

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!

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

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

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...

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

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

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

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

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

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

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

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

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