Eulogy and Envoy

Dear Readers,

Thanks so much to all of you who have followed Mom's story.  Since my last post, so much has happened.  We had incredible nursing care.  We had great family time.  And our mother had a beautiful send-off.  She was surrounded by her husband, all four of her children, four of her five grandchildren, one of her sisters, and her lead nurse from hospice.  Through it all she was aware and very much herself.  We were able to tell her we loved her, we would miss her, and that we would take care of each other the way she took care of us.

On the quote wall, she had written: "Our greatest glory consists not in never falling, but in rising every time we fall" (Oliver Goldsmith).  My sister found a small quote book of Mom's (given to her by one of her students) in which she had circled and starred some of her favorites.  Next to this Goldsmith quote she had written: "Of course."  Of course.  

I knew I would be sad.  But I did not expect the joy to be mingled in as well.  Her passing felt very much like a rising.  I now feel the full force of her presence more than ever, though I suspect the hardest part is yet to come.  My favorite part of the day is the moment I wake up, before I realize that this is real.  

Thanks to all of you who sent kind words, kind thoughts, or offered your presence in some way at this past week's services.  It was a comfort to the whole family and to her friends.  Several people have asked me for a copy of the eulogy.  Here it is (with more quotes from the wall!):

It is hard to be alive. For a lot of people it’s hard to wake up and the morning and lug their bodies out of bed, for some it’s hard to face what they see in the mirror, and for most of us it’s hard to find the daily courage and concentration to live the life that we want to every day. So many people have lived and died in this world that it’s hard to imagine that anything any of us do has meaning. It seems like with all the people that have lived and breathed that someone would have already figured out what there is to be figured out already. But, as I have been reminded in many ways throughout my life, you don’t know everything. But it’s nice to think each of us, by the end of our lives, can figure something out. And we can take what we have learned and pass it on to those who are just beginning their lives, to make it a little easier for them and for the world. 

Rosie Kelly, my mother, knew a lot of things. And at the top of list of those things was how to listen. She was a humble woman who knew how to take advice from her elders and from the 3 and 4 year olds she constantly corralled. She looked for beauty and wisdom everywhere. A concrete example of this is in the bathroom of the home she created at 1830 E. Dugan Hollow Road in Madison, Indiana. Taped on the bathroom wall, in perfect view during the numerous daily potty breaks, is a collection of sayings and quotes that my mother started and others added to. I never asked her why she began this, but I don’t feel like I am stretching the truth in thinking that it was her intention to provide everyone who passed through her bathroom with a moment of reflection upon their lives. I say this not to make my mom sound like a Buddha, imparting her priestly knowledge on anyone that she could, but simply because I am like her. I am easily distracted, especially by the beautiful and fun things of the world, of which she taught me there are many. And at different points in my life when I have found myself sitting on the toilet, a small moment away from the constant demands that come with being alive, I have wished for those quotes to be taped on the wall across from me so I could use those minutes of reprieve for thinking about the beautiful parts of life. 

So today I ask you, to take a break from the worry and demand of your life, and think about what a beautiful thing it is to be alive. What a beautiful thing it is we are all here together. And let us all take a moment to listen to handwritten pieces of advice that Rosie Kelly took time out of her life to stop and write down so she could be reminded —every day. 

The first is from naturalist John Muir: "When we try to pick out anything by itself, we find it hitched to everything else in the Universe.” 

or, as he said another way, 

"When we try to pick out anything by itself we find that it is bound fast by a thousand invisible cords that cannot be broken, to everything in the universe." — John Muir. 

She didn’t write it, but she lived it. I would often go looking for my Mom during or after school with some trivial question or request. When she wasn’t in her classroom, I would ask one of her fellow preschool teachers where she was, only to have them respond, “Where do you think she is?” And I knew the answer was always, “The woods.” She was constantly in awe of nature and taking lessons from it. One of Allie’s friends, Amanda Acker, said about her, “I remember her marveling at the plants growing up through the rocks.”  

She was someone who appreciated every inch of the world and viewed it as a gift for us soak in. From the countless beautiful flowers that she spent her free time cultivating to the snakes and spiders that we found around our house. I was taught never to kill snake or spiders. In fact we have about 6 books on how to identify different types of snakes and spiders. Because mom appreciated all parts of nature and took lessons from them. 

She looked at the cycle of life and death as just another part of nature.  As a nurse at Methodist Hospital, Rosie cared for patients who had severe head and neck injuries many totally debilitating, some fatal.  As a Lamaze instructor, she coached parents who were bringing new life into the world, many of whom invited her to attend and assist those births.  She knew the full circle of life intimately.  Maybe she had the ability to actually see those invisible cords of nature.

There is a picture of her on the beach, coffee mug in hand, the sun barely up, bent double, looking for shells.  Which leads us to another of her favorite sayings:

“Wisdom is oft times nearer when we stoop than when we soar.” — William Wordsworth 

Mom, she was a seeker.  She was curious. She researched and valued and was intentional. She sought out different approaches by reading and sharing with others. She never thought she had the 100% right answer but she was excited about that small margin of uncertainty. It left room for wonder.

I remember numerous times coming home and being upset at a classmate or a teacher and Mom relentlessly responding to my complaints with, “Well, how do you think they view this same situation?” or “Well, they are doing what they think is right” and countless times I was so frustrated! I just wanted to complain! I wanted to take the easy route of exclaiming that they were wrong and bad! But Mom gracefully led me down the difficult path of humbling myself enough to acknowledge that everyone is feeling what they are feeling. We don’t know everything. And everyone has a right to think, feel, and be the person that they are. In doing this she laid a great foundation for me, my sisters, and everyone who she had an opportunity to teach.  She taught all of us that all of us, ACTUALLY ALL OF US, EVERYONE WHO IS ALIVE, is a part of a family, and we should think, feel, and care about each other. 

A good example of this is when she gave her commencement speech to the graduating class of Shawe fourteen years after first having them in class. She looked at every graduate as they sat in their circle of chairs and called each one by name.  In order.  She did not have a seating chart.  Dad tried to talk her out of it.  What if she were nervous and stumbled on a name?  But she didn’t.  She looked at them then as she did the first day she met them— as complete, unique, whole individuals.  She really saw each one, as she did each child, each shell, each bird.  She bent to meet them where they were.  In so many of the moments of her captured on film, she is squatting.  To plant a tree, to talk to a child, to be where she can really see.

Which brings us to our last quote: “The greatest pleasure of life is love” – Euripides.  

And for this I am going to start with words spoken by my father: “Our commitment began when were 14 and 15, as a freshman and sophomore in high school. I had heard of Rosie York when I was an eighth grader, but I didn’t know who she was until I was a freshman.  She walked into the gym when I was sitting on the bench.  I liked her athletic walk and all the curves of her body.  But she really was just athletic.  I liked her short hair cut.  I liked her freckles. But the more I got to know her, I just liked how sweet she was and how she loved me back.” Now Dad, I would never have the unique connection you had with Mom, but I have to say we have all felt something like this.  Especially “I just liked how sweet she was and how she loved me back.” Love is such an easy word to abuse, misuse and often confuse with other emotions. But I have never felt love more than the love given by Rosie Kelly. She is a woman who constantly accepted those around her. From nursing to childcare, she cared for so so so many people.  Accepting each person and treating them with the same acceptance and care with which she treated her own children. It is amazing. I, her son, who lived with her for 18 of my 23 years of being alive, still am in constant amazement of her ability to love everyone around her, to take in every piece of so many people’s being and to accept and care for them. 

Let me take a moment to care for you all. Mom has gotten this love back a thousand-fold from the entire community, especially these past four years, and for that we are so grateful. Thank you. 

So you sitting there in those oh-so-uncomfortable pews, (sorry Father) I ask one thing of you today. One thing. Just know it is possible. It is possible to accept and love all those you come across. It is possible to be nice and kind to people right away. It is possible to open your arms and mind to everyone around and to love them, even if you don’t like them or even know them. And it is beautiful to love those who love you.  My mom, Rosie Kelly, showed me and my sisters that every day since we have been alive. So take today to love those around you and to remember Rosie Kelly. 

Much love,

jk

Scan Results and Charlie Parker

Hello dear friends and family,

As you may have heard, the results of the July 18 scan were mixed-- no visible tumor in the cerebellum but swelling in the frontal lobe (according to Dr. Breneman).  While we are of course happy that the radiation seemed to be effective in eliminating the tumors, we are facing the reality that Mom's condition is declining.  She is no longer able to walk or talk much and even eating has become a bit of a struggle.

At the appointment Dr. Breneman suggested that it might be a good time to contact hospice.  Yesterday, we met with two wonderful people, Tammy Eigel and Doug Schanding, both fellow Prince of Peace goers, to complete the admit process for hospice.  It was an emotional meeting; Tammy's daughter was a student of Ms. Rosie's in preschool and the two of them were kindred spirits. "Nettie loved bugs," Tammy said.  That pretty much cemented the bond.  But the discussions were fruitful and ultimately, we decided that it would be best not to seek further treatment at this time.  Of course, that can change, as both Tammy and Doug assured us, but for now, a little peace is in order.

The visiting nurses will be in today to do their first check-in.  A wheelchair has been ordered.  Dad expects to check-in with Dr. Breneman this afternoon with a few questions and to hear the results of the tumor board meeting.  So I will keep you posted as developments unfold.

To close, I will share another bit from the quote wall.  Charlie Parker's words were written in Mom's beautiful print: "Music is your experience, your thoughts, your wisdom.  If you don't live it, it won't come out of your horn."  She has been singing along lately as we sing.  Yesterday, the Chestnuts were "serenading" her with our regular Tuesday night practice.  She looked up and smiled for a moment.  She seemed to enjoy the personal concert, and I saw her fingers moving with the music.  I think she was dancing.

Dance on,
jk

Radiation Complete, Scan Soon

Hello friends and family,

Just wanted to write a little to let you know how Mom is doing.  She finished her radiation treatments (twenty-four in total) a couple of weeks ago and will have her next scan July 18th.  She has been able to get out and do things, but the going is slow and sometimes requires two people to help her get where she needs to go.  Most of the time, she can manage holding two hands, but this weekend it was nice to have wonderful people around and there could always be a support person on each arm (sometimes an extra or two to get the door or smooth a rug).  She went to the parade and watched from our good friends' front walk.  She joined the Cheathams for their annual fireworks party.  And she made it down to Aunt Georgie's Regatta festivities.  She is amazing.  She seems to really enjoy these outings.  And she loves seeing everyone, even if she cannot always express it.  As she was leaving Aunt Georgie's, she said, "I'm really glad Dad-- " and then she made a beckoning motion with her hand.  "Brought you?" I asked.

"Yes," she said.

Yes.  It always cheers me to be around her.  She seems relaxed and at ease most of the time, and if not, she has discovered that chewing gum helps relax her.  So we are stocked up on gum.  :)

Thank you all for your kind words, kind thoughts, kind gestures.  I was at the house early this morning and saw a quote Mom copied and stuck to the bathroom wall (if you've ever been to their house, you know about the quote wall):  "A good exercise for the heart is to bend down and help another up."  Many hearts are getting a lot of good exercise these days.

Love to all,
jk

What We Know

She did it!  She got that boy graduated and celebrated him in style on Saturday.  And yesterday she had a full and active Mothers' Day.  She opened her iPad (finally!  Esphyr has been waiting and waiting, but Mom insisted we wait) and the kids were happy to give tutorials.  Then we went out into the beautiful day and Mom joined in the Frisbee game (with Dad spotting).  She was amazing at catching for only using one eye.  (She's still having the double vision, so she's been using her painter's tape patch, which is a cheerful blue (see above).  I love it.)  Then we grilled out and and ate out under the pine trees.  Her appetite is good-- she enjoyed the burger and the sweet potato fries.  :)

Treatments should start this week.  She is opting for the longer course of radiation (five to six weeks) because it has a better chance of being more effective both in the short and long term.  Dr. Breneman and Dr. Morris decided not to do the chemo concurrently, so that will start after the radiation.  Dr. Breneman said that yes, of course, she can take a break for the wedding.  (Allie & Red wed June 14th in Virginia!)

One thing we learned is that there may or may not be tumor cells in the spinal fluid.  There were no cells present in the spinal tap (nor in the spinal scan, which would not show the fluid but shows that there are no spinal tumors), but there were protein levels that indicated that there might be.  At our last visit on Tuesday, May 6th, Dr. Breneman explained that the protein could be elevated because of contact with the known tumors.  This was encouraging to be because I had thought that it was a given that there were tumor cells in the spinal fluid.

So that's the latest.  Sorry I have not been keeping up as well as I should.  This is the end of my semester, so I have been grading many essays and answering lots of emails.  But I will finish up this week and hopefully keep you better informed.  Thanks all of you for your kind thoughts and words.  They lift us all but especially Mom.  As we were leaving Bloomington, Dad and Mom started singing "Cat's Cradle."  I just sat in the back, listening and thinking.  How lucky we all are.  All of us.

Love and gratitude always,
jk

Recurrence and Laughter

Dear Friends and Family,

Mom's MRI last week showed new tumor growth (three) in the cerebellum area.  This explains the pain she's been having.  Of course, we knew that it was very likely this would happen, we were not especially happy to hear the news.  Yesterday she had a full spinal MRI to determine whether there are any tumors there.  The results of that scan will go to tumor board today, and the board will recommend a course of treatment.  Then, Mom will decide whether to accept their recommendations.

I admit that I felt pretty flattened Friday and Saturday after the news.  But Sunday was a nice day; we spent most of it with Mom and Dad, and she is laughing a lot and getting out-- we walked half a mile in the gorgeousness of spring.  In her words, "I don't want to dwell on it."  It being the cancer of course.  On our trip yesterday, we just marveled at the red buds and new leaves and the amazingness of spring.  It was a great way to celebrate Earth Day (minus the driving and gas-burning, I suppose).  She listened with the kids to Roald Dahl audio books, and again laughed a lot at Dahl's brilliant sardonic wit.

So think of her, as I know you do, but when you do, laugh.  Or at least smile.  :)  She is.

We'll let you know what the board says.

Cheers,
jk

News from Dr. Breneman's Visit

Hello all,

The visit with Dr. Breneman Tuesday was reassuring if not entirely clarifying.  Basically, he stressed the main point: no tumor is recurring, "the scans are clear."  That's always good to hear.  He also said that the Trental did seem to do its job, at least in the cerebellum.  Swelling was better there but not in the frontal lobe.  The swelling in the frontal lobe was probably caused by her 2010 radiation, he thinks.  He also said there is gliosis, or scarring, there as well.  For this, he recommended trying Memantine, a drug that has been typically used to treat Alzheimer's patients but has also recently proved effective for people with brain injuries due to radiation such as Mom's.  So she agreed to try that.

As for the nausea, it has subsided somewhat since going off the Trental.  Dr. Breneman referred Mom to an endocrinologist to determine whether the thyroid and her hormone levels might be contributing to some of her struggles (extreme fatigue, for example).  He said they might need some "tweaking." So that will be on the horizon.

He also suggested using a cane until her balance improves.  She was comfortable with that, and it does seem like a good idea, at least for now.  As part of the exam, Dr. Breneman had her walk across the room, and it was difficult for her.  She needs props, as they say in yoga.  And in yoga, the guiding principal is to honor your body.  It is different every day.  So she is honoring her body by modifying according to the needs of the day.

Dad has been working from home most of the week, so that was nice.  And Mom got to visit with her sister Jane yesterday.  I am looking forward to sneaking in a visit sometime today or tomorrow.  I always love to see her.

Thanks for all your kind thoughts and words.  March is almost here!  That's something to celebrate.

Cheers,
jk

Rough Week, Better Weekend

Hello friendly friends,

Just wanted to let you know that last week was rough.  After being intolerably sick while taking the Trental, the doctor OK'ed going off of it for two weeks to see if that was the cause of the nausea.  Well, the nausea seemed to be the same or even a little worse after stopping the Trental, which was discouraging.  Plus, Mom didn't seem to even want to eat or be up off the couch much (can you blame her?) because she was feeling so sick.  It was to the point where it was beginning to be cause for alarm.

Thankfully, Saturday and Sunday were much better.  She ate a little more and kept it all down (more than a small victory!) and perked up enough to actually have dinner at the table.  Another victory.  Emeka and I had a couple of events to attend, and I was worried it might be too much for them to keep the kids, but if anything it seems to have had a positive effect.  The power of grandkids.  I was saying something to that effect, something like: "You guys worked your magic," and Esphyr's head jerked around to look at me with eyebrows raised, her voice rising too: "You mean we have magic inside us?"  Yes, my dear.  That is what I mean.  Kid Power-- learned it from a certain clown I know.

So I began the weekend near despair and am coming out of it feeling a little encouraged, hoping today is another good one for Mama Rose and that tomorrow Dr. Brenneman will have some useful piece of information for us.  I'll let you know what he has to say.

Happy last week of February,
jk

PS Mom has started to get some fun mail.  Thanks to the senders!  It really does brighten her day.

Steady As She Goes / Send Joy

Hello everyone,

Hope this post finds you warm and well in this frozen wonderland (as in, I wonder if spring will come this year?  I know it always does, but what if...?).   Just to give you the latest on Mom, she is doing okay.  And by okay, I mean, everything seems medically stable, she is able to keep down the two Trentals per day (Dr. Warnick okay'ed reducing the dose from three to two), and the Zofran seems to be making the nausea bearable if not imperceptible.  So all of that's the good news.  It's a delicate balance.

And speaking of delicate balance, Mom's balance has been a bit of a challenge of late.  If you have seen her recently, you might have noticed her being a little wobbly.  That is fairly new, and she says the Zofran makes her dizzy, so that could be the cause.  (A big part of my learning through this whole process is that treatments aren't always a treat; rather, they are often the cause of their own host of anti-treats.)  She is also really tired, and so even when she decides to go out and do something, she often loses steam before making it out the door.  So as I was lying in bed last night mulling this over, I thought maybe, if you are so inclined, you could send her some good old-fashioned snail mail.  This blog is great for me because I get so much good feedback from it, but she has not been able to use the computer much (or at all) lately, so a round of cards, postcards, letters might be in order.  She's gotten so much good mail throughout this ordeal, and she really appreciates every card and letter.  She shows me almost every piece of mail she gets with an air of wonder, like, "Can you believe this person thought of me?"

With all this crazy weather, I know it's been hard for everyone to get out.  So maybe we can write each other.  If you need her address, please let me know and I'll get it to you.  Tell her how YOU are doing-- what's new with you?

Thanks so much-- for reading, for caring, for supporting, for being part of this.

Love,
jk

Doc Says, "Much Better!"

The doctor visit in Cincinnati Wednesday went well.  The doctors said Mom was doing "much better" this time compared to last.  They ruled out necrosis and small strokes and decided that the frontal lobe issues they were noticing in the MRIs are just caused by a little swelling.  They think this is due to Mom's 2010 radiation.  So they gave her a drug to help with that, which is the good news.  The bad news is: it's very nauseating. So Mom and Dad are trying to work on a system that helps that.  So far, it's been a little rough.  :(  But they're trying some anti-nausea meds (Zofran) to combat it.

She's been hunkered down resting these past two days because of the cold.  We're on our way up for a visit!

Hugs to everyone and stay warm,
jk

Good Times in Dugan Hollow

Dear Readers,

Please forgive my lack of updates-- we have just been having too much fun!  Since last I wrote, Christmas has happened, of course, a zip line was installed (yes, Mom tried it out-- twice!), we rang in a New Year (Mom and Dad sponsored a date night for us and kept our kids), several birthdays were celebrated, some multiple times, an anniversary happened (more date night time sponsored by the grandparents), and a Cats victory over Tennessee was closely observed (Mom and I watched from the comfort of the cozy basement while the rest of the troops actually made the pilgrimage to Rupp Arena).  Mom did not miss a moment of the game and chided the Cats for their lackluster "D" during the first half.  :)  After the games (we watched a little of the Duke/No. Carolina St. showdown, too), we made blueberry pie together from berries we'd picked and frozen last summer.  Yum!

So yes, things are good.  There are some small developments-- a new medicine, which requires food to be taken (learned that the hard way), a doctor visit coming up tomorrow-- but mostly just living life and resting when necessary.  I will post a new update after the appointment tomorrow.  As always, thanks for reading, thanks for caring, stay safe, stay warm.

Much love,
Jill

Wonders Never Cease

So Mom and Dad and Aunt Cindy went to see Dr. Warnick Friday.  He looked at her lab results and decided that low thyroid levels may be the culprit (for all the speech difficulties/confusion/exhaustion).  She will see her family doctor tomorrow and he'll start her on some thyroid medications.  Dr. Warnick (the surgeon) thinks that this alone may take care of these issues, so he wants to try that first before exploring any other options.

Meanwhile, she has been cheerful despite all the aforementioned ailments.  Many of you have probably seen her out and about.  She's been to Aunt Nancy's birthday celebration, church, and of course, our house.  :)  She's also been hanging out with Esphyr two afternoons a week, and Esphyr has learned to build marvelous block towers by herself while Grandma snoozes.  Her sense of humor is very much intact.  She laughs and smiles a lot, especially with the kids.

Thanks to all of you for thinking about her and asking.  Thanks to the small army of food-bearers.  Thanks for the prayers.  We appreciate all of you!  In the words of Tom Kelly, "Take care of each other."

Much love,

jk

Post-Op Update

Hello all!

Sorry I have been so late getting an official update posted.  Dad and Mom went to see Dr. Warnick on Friday and he was thrilled with how well she is doing physically.  She passed all her gross-motor neurological tests with flying colors.  He was baffled by the other concerns: Mom's lack of fluent speech and a little confusion about ordinary tasks.  Dr. Warnick didn't think these things should be happening based on the area involved in the surgery (the cerebellum), so he ordered blood tests, which will take place Monday (tomorrow), and speech therapy, which they will schedule soon.  He thinks these side effects should pass with time, but he's only giving it two weeks before he calls in another neurology colleague who specializes in these areas to help out.

That's the latest.  The best part is she always says "yes" if you ask "are you happy?" and "good" if you ask "how are you feeling?"  So at least she's not in any physical pain. :)  She doesn't seem too frustrated when she can't find the right word for something.  I think it's harder for those of us who are trying to understand her and wish we could do more.  (Yes, that's me.)

So thanks for all your kind thoughts and inquiries.  We'll let you know what we find out tomorrow.

Thanks!
jk

Seeds of Hope

Hello dear readers,

A friend of mine called tonight to say she'd heard my mom "wasn't doing well."  I was delighted to hear from this friend, but I was shocked to hear that my mom wasn't doing well.  Despite the fact that she is having her third brain surgery tomorrow, she seems to be doing very well.  I guess "well" is always relative.  And the key is perspective. 

This month, she started having headaches and feeling unsteady on her feet.  She and Dad let the doctor know this was the case, so they bumped her regularly scheduled MRI up to last week.  The day of her appointment was a tough one-- lots of nausea and dizziness.  So the doctors re-upped her steroid dose (Decadron-- they had been experimenting with weaning her off of it, which told us what we needed to know: she needs it!).  The Decadron made her feel better very quickly, but the swelling that the MRI picked-up indicated some activity in the cerebellum.  A follow-up MRI showed some tumor growth, so the tumor board voted for surgery.  Dr. Warnick will be the lead surgeon this time around.

Mom and Dad have checked into the hospital and will report for surgery first thing tomorrow morning.  Dr. Warnick said to expect a four to six hour surgery.  They will remove all visible tumor cells and try some radiation "seeds," or internal radiation, to help prevent further growth.  So we have every reason to feel good going in.  Mom admitted to being a little nervous but feels good about the decision and the team.  UC has been so good throughout this little adventure; we expect them to continue their streak. 

Thanks for all the queries and well-wishes.  Sending love right back atcha.

From all the family,
jk

Our trip to Cincy to see Dr. Morris (Rixe’s replacement) went well.  He said what we were hoping for …. “there will not be any follow up treatments”.  Can’t treat something that you cannot see.   We will be going back on April 17 for PET and MRI scans in the morning and an afternoon appointment with Dr. Morris.  Then again on April 22 to see Dr. Theo.    If everything is clear in April,  we’ll be back to scans every 3 months.  That is about as good as it gets.    So much to be thankful for !   

Paul

Love and Recovery

from Paul:

Rose is bouncing back.  Since the doctors were able to do something this
time when they opened her up,  the recovery has involved more pain and more
headaches.

What appeared to be a growing tumor in her cerebellum,  proved to be all
dead tissue as a result of her gama-knife treat for a tumor in that area in
2012  ...  2/3 necrosis and 1/3 SNUC.
SNUC is the same wicked tumor that first appeared in the front part of her
brain and nasal area in June of 2010.  We were hoping for 100% necrosis.

The scan after surgery indicated that all is clear.  That means the scan did
not pick up any living cells of the SNUC tumor throughout her brain.  That
also means that Rosie has earned her second "new lease on life".  Thanks be
to God and the many prayers. 

She is feeling better and better every day.  Daughter Allie spent 8 days
assisting the healing process.  We are celebrating Valentine's Day with
some dear friends by going out for a nice dinner and some good music (the
one and only Ladysmith Black Mambazo).

Rose is an inspiration ... we give thanks.

Paul 

The Morning Report

Hello All,

Thank you so much for all the well-wishes, prayers, good energy, and love.  I just got off the phone with Mom and Dad, and they sound very chipper and up-beat.  Dad said Mom was feeling "spunky" this morning, which was especially good because last night she was not so comfortable.  His exact words were, "She feels like she got hit by a truck."  So today she has already walked to the bathroom and back.  Nurses are still on hand to steady her.  She is a little wobbly on her feet, but the fear that she might need rehab in order to walk again after the surgery has at least been laid to rest.

As for the surgery itself, Aunt Cindy reported that Dr. Theo came into the waiting area with a big smile on his face.  "Surely he can't be delivering bad news," she thought.  And he wasn't.  Everything went better than expected-- a nice change from the previous surgery!  He did less cutting than he thought he would have to.  The suspicious "spot" appeared to be all necrotic tissue from her gamma knife surgery last year.  Aunt Annie compared it to a bruised apple-- once bruised, it continues to bruise and get bigger.  The initial reports from the microscope matched Dr. Theo's observations-- all dead tissue.  So we are waiting for pathology to give the final confirmation. That should be back in a day or two. 

There is an outside chance that Mom will be discharged tonight.  She will probably be ready, but some of the doctors are hesitant because of the long drive.  So sounds like if not tonight, tomorrow morning at the latest.

She has her breakfast ordered and is getting "good rest," in her own words.  And she says she can't wait to see everybody!

Thanks and thanks and thanks again for all your love and support.  Right back atcha.

Love,
jk

Surgery Tomorrow

Hello everybody,

So the spot in the cerebellum that they had been watching was growing enough that the team decided it was time to take action.  All agreed that surgery was the best route, even Dr. Rixe, whom mom and dad consulted in Georgia, despite the fact that she has zero symptoms (no loss of balance or coordination) and is doing very well clinically.

Mom has been a little anxious leading up to the surgery, as we all have been, but she is eager to have it done.  One great benefit of doing the surgery is that the doctors will be able to biopsy the "spot" and then we'll know what it is.  Today she was more calm and very focused on getting everything done so as not to delay surgery.  There was a problem with the MRI machine at the place where it had originally been scheduled, but they were able to reschedule at a different location.

MRI was achieved this afternoon.  Mom and Dad will spend the night in Cincinnati, where they will be joined by Cindy (mom's sister) and Tom and Melinda (dad's brother and sister-in-law).  Surgery is scheduled for 7:00am tomorrow morning.

I plan to light a candle at that time and keep it burning until the surgery is over.  Feel free to join me in my little vigil if you'd like, or just send light and love in any form that you wish.

I will post again as soon as I know something tomorrow.

Thanks for reading,
jk

Giving Thanks-- The Story of the Shrine

I haven't posted in a while-- sorry!-- but in this business, no news is good news.  Mom has continued with her routine scans every couple months, and all is clear.  Here is my dad's account of their visit to the shrine of Saint Theodore Guerin.  I never posted much about it because I didn't feel I could do it justice.  So consider this justice served:

                                                                Simply A Miracle for Rosie

In early July 2010, the very first words out of the doctor’s mouth once the tumor was identified were: “We can beat it, but the odds are against it.”  That gave us hope.  After six weeks of intensive radiation and chemotherapy concurrently, the SNUC tumor had been reduced 90% of its original mass.

It was deemed operable.   Surgery was schedule October 19, 2010. To the shock of everyone, including the surgeons, during the operation living cells were present, predominantly in the dura.  Per the surgeons, “Cure was not possible.”  The only option was additional chemotherapy to keep the tumor from growing.  The light of hope was much dimmer

We had tremendous respect for our chemotherapist.  He was a Frenchman and it was obvious from the start that his mission was to maximize the best results possible whatever the diagnosis.  Our first appointment with him eight days after surgery was one with much positivity.  Quite the contrast to the surgeon’s strong words, “Cure is not on the table.”   Wanting to be sure we understood the reality of the situation, we posed the question to our chemotherapist, “Is cure on the table?”   There was a pause as he gathered his thoughts.  Then he said, “Who knows?” 

These two words with a questioning tone brightened our hopes.  Rose needed 25 days of healing

post-surgery  before she could resume chemo treatments.  Rose wasn’t sure she even wanted to try more chemo.  The onslaught of high-powered treatments between July 22, 2010 and September 10, 2010 were almost too much to bear.  During that time frame, she endured 35 radiation sessions and three chemo infusions, which required  three nights and four days in the hospital each time.   After treatments were declared completed, her body was so worn down she needed another four days in the hospital to get her metabolism back in balance.  One could understand her hesitation to start back into chemotherapy.  

On the day of her failed surgery, the surgeons had said her life expectancy without any further chemo treatments would be four to five weeks. These were dire times.  We all talked about it as a family.  Rose agreed to give the “keep it at bay” chemo a try, with the understanding that she could stop them any time if she chose.   Prior to resuming the chemo, Rose had to sign a release form that basically said there was a low probability that the treatments would be effective.  Another looming fact was that in the 64 days since her last treatment, the tumor had grown back to 50% of its original size.  Prior to surgery the tumor was not visible in the brain and appeared to be an operable size in the nasal area.

Around six o’clock the next evening, after the fourth “keep it at bay” chemo treatment, the phone rang.  It was our chemotherapist.  He informed us that Rose’s blood counts were dangerously low.  He said, “The drugs are just too toxic.”   The doctor advised Rose to take the fifth round of chemo, then set up an appointment with his office 30 days later, and he’d have a plan “B” ready.  We were disappointed to get the phone call because the scans were showing that the tumor was not growing.  In fact, there had been a slight decrease in size.   Rose was bouncing back from each chemo treatment after two or three days,  so it all seemed very manageable.

Then the next weekend or so, while reading the Sunday  morning book reviews in the paper, I discovered a critique of a book about the canonization of Sister Theodore Guerin.  The article told a story about her second miracle.  It was about a protestant minister who had a serious eye ailment.  The minister went into the shrine of Sister Guerin on the campus of St. Mary-of-the-Woods College in Indiana.  He prayed into the night.  The next day, his eyes were less irritated.  When it came time for surgery, there was no need.  After the research into the case was completed, it was judged to be Sister Theodore Guerin’s second miracle.  She became Indiana’s first saint.

I showed this article to Rose and asked her to read it.  After she did, I asked her what she thought.  She said, “I think we should go to the shrine.”  We went 12 days prior to our plan “B” appointment.

It was a special day.  We bumped into a good number of saintly people that day.  As we traveled, a former parishioner of our Prince of Peace church in Madison called us on the phone.  She had read on Facebook that we were traveling to the shrine (unbeknownst to us, our daughter posted on Facebook for our community to keep us in their prayers as we visited the shrine).  The friend/caller wanted us to see her aunt, Sister Diane, who was a senior nun on campus and very involved with the shrine and the history of Sister Theodore Guerin.  As instructed, we called Sister Diane as soon as we drove onto campus so she could meet us at the shrine.

The day before our trip to the shrine, I called my godson and his wife about our plan to visit the shrine. His wife Julianne was a graduate of Saint Mary-of-the-Woods College.  She had previously expressed an interest in meeting us there so she could be a part of the visit.  She said there was a slim possibility that she would be able to meet us at the college.  It had something to do with her husband being on a business trip and driving through the night to arrive home early.  If he was willing, able and agreeable to keeping their three children, plus an extra child that his wife had planned to care for on that same day to help out one of their couple friends.   Then it just so happened that one of her college friends called and asked her to ride up to the college on that same day.  That call improved the odds.

As it turned out, it all fell into place.  Sister met us at the shrine to lead us in prayer.  Her devotion was contagious.  As many had done before her, Rose wrote in the “visitor/prayer book” of her medical issue.  We felt like Sister Diane’s prayers went directly to God and our prayers were free to follow right along.

After some lunch, Julianne gave us a tour of the campus, introducing us to some of the other holy nooks on campus.  Her gentle and kind spirit also enriched our overall experience.  Rose and I closed out our visit to the shrine with an hour of prayer.  Not one person entered during that time.  The solitude made us feel like we were one on one with Sister Theodore Guerin.  On our way home, I asked Rose what she prayed for and her response was, “God’s will be done.”

Some 12 days later, we traveled to the Cincinnati University Hospital to have an MRI in the morning and a doctor’s appointment in the afternoon to find out about plan “B”.   I had a business appointment in the morning, so I caught up with Rose and her entourage (a couple of biological sisters,  a friend and  a daughter or three) for the 2:00pm doctor’s appointment.    As we waited for the doctor to walk through the door to talk about the state of the tumor, we were all trying to think of pertinent questions to ask.  The good doctor nearly floated into the room to announce that the tumor did not show up on the scan.  From the first diagnosis on June23, 2010, the tumor had always been visible in the nasal area.  The doctor asked us to return in 30 days for another scan.  It was clear.  He then gave us the summer off.  We returned in 90 days and the scan was again clear.  To date, Rose is 19 months without treatment. 

Remission is our new favorite word.  It is miracle time.  As we said when the joyous news broke, it could be a summer miracle, summer and winter miracle or a lifelong miracle.  Rose is one of the happiest people on this earth.  She appreciates the gift of life like never before.  So many people played a part in delivering this gift to one with a pure and deep faith in God almighty.  Sister Theodore Guerin answered our prayers and the prayers of many others.  We give thanks every day.      

Back to the Shrine, and Au Revoir, Dr. Rixe

Today Mom and Dad went back to St. Mary's of the Woods.  I never posted about their original visit-- I had grand schemes to do a little video interview with Mom and have her tell the story-- but the short version is that they visited the shrine there, and Sister Diane prayed with them.  Shortly after that is when the tumor disappeared.  So they returned today on a little mission of Thanksgiving.  I'll get the full update from them tomorrow and maybe do that video interview after all.  But Dad asked me to post to let folks know they took the trip.

In other news, Dr. Rixe is moving on.  Here is the story, from Dad:

Greetings,

 

Rose spent Wednesday morning taking test and the afternoon see doctors.  Rose got a good report. The Scans revealed that the tumor in the back of her brain (that was treated in early January) was still visible, but much smaller.  Both Rixe and Guarnaschelli were very pleased.   Plan is to check every three months.

 

However,  we were shocked when Dr. Rixe told us he had taken another position in Georgia.  At the end of the appointment I asked the “fellows” to leave the room.  The main reason was I wanted to speak with Dr. Rixe  alone about Sister Theodore’s “contribution”.   It was the first time we had discussed Sister Theodore Guerin with any one on her medical team in Cincinnati.  Dr. Rixe was totally receptive.   That opened up wonderful discussion about how many things factor in to the healing process.  Twice he said the family, friends and community support was “huge”.   He made us, once again,  feel good inside.  We hugged him and said goodbye,  knowing we would never see him again.   As we traveled home the reality sank in.  He lead the charge that played a big part in saving Rose.   We hate to see him go.  On the flip side,  Dr. Guarnashelli will take the lead.  We do feel good about that.  Josh McKensey is back working with her.

 

Happy and thankful for every minute.

 

With appreciation and love 

 

 

Paul and Rose

P.S.  Feel free to forward to any and everyone !

STaRS Went Well!

Hello everyone,

I just heard from my dad, and he said that everything went very well.  They spoke to the surgeon and to one of Doctor Guarnaschelli's partners after the procedure.  Mom was relaxed and joking all day-- much different from the anxiety surrounding last time around with radiation.  She feels good now and is even planning on making it to Sonny's basketball game tonight if she's not too tired.  Amazing, right? 

Now they wait for Dr. G (radio-oncologist) to make an appointment for a follow-up scan in two to three months.  Phew!  Feeling very lucky and grateful right now.

Blessings to all,
jk