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

Best of the Bad News

As many of you have heard, the doctors found a small spot (measured in millimeters) on mom's last two MRI's.  After much debate, they decided that it is most likely a recurrence of the SNUC tumor, even though it is in a totally different area (the cerebellum rather than the frontal lobe).  Even though that's rare, it would be more rare for her to develop a completely different type of tumor.  As one doctor said, it would be like lightning striking twice.  We were a little disheartened by the news at first, but we soon decided that this was really the best of all possible bad news.

They found no other areas of concern in the PET scan, so they are going to focus on the spot.  The consensus regarding the treatment approach is that she should have Stereo Tactic Radio Surgery (aka STaRS).  This is the "one dose" of radiation that they mentioned earlier.  It's basically a very intense, precise dose of radiation that will remove the tumor.  So even though it is called "surgery," there's no cutting involved.  Just radiation.

She was fitted for the radiation mask the week before Christmas, so everything is set for her to have the procedure next week.  They would have done it sooner, but she had planned to visit Allie and Natalie and families in Virginia this past week and the doctors were very much in favor of her doing that.  So, she's back home as of last night and resting up for the big day.

Hope that 2012 has already brought you many blessings and that it holds many more,
jk