Getting Better All the Time

Mom and Dad saw Dr. Rixe again on Wednesday.  As an indicator of how well things have been going, I didn't even know about the appointment!  But I got the call Wednesday afternoon as they were driving home.  Basically, still no tumor.  And Dr. Rixe made a point of saying that the longer they go without seeing tumor, the better the "good news" is.  In other words, the longer she goes with no recurring tumor cells, the less likely that it will recur.  I think I am actually starting to believe all this good news.  It's finally sinking in!  Hooray!

Baby You Can Drive My Car

Another bit of progress that I forgot to report last time is that Dr. Rixe gave Mom the go-ahead to drive.  She has really been enjoying her newly reinstated vehicular freedom, but she's being extremely cautious and not really driving much at night or any time she feels tired.  Esphyr has been the most excited about this news, perhaps.  The first few days after, she kept announcing, out of the blue, "Grandma can drive!  Hey Mom, did you know?  Grandma can drive!!"  To her, it's truly a miracle because in her memory, Grandma has never been able to drive.  So it is almost as revolutionary as Sonny being able to drive.  Luckily, we don't have to think about that for ten more years.  Whew!

Hello, Goodbye

That's all for this Beatle-themed post.  Hope to hear more good news, from Mom and from all of you.  Don't forget to share your own!

Lots of love,
jk

REMISSION!

They finally said that wonderful word today!  Mom is officially in remission.  I was just rereading the subtitle to this blog, and when I wrote "journey of healing," it seemed like wishful thinking.  After the last visit, my dad asked me if I thought mom's healing had been a miracle.  At the time, I didn't know what to say.  I didn't feel qualified to speak about miracles.  But the more I have thought about it, the more I believe that it is a miracle, however you happen to define them-- spiritual, religious, medical, natural-- this certainly qualifies!

Thank you, thank you, thank you!  If you are reading this, you have probably done so many things, small and large to help Rosie and all of us.  She is grateful for all the prayers, cards, thoughts, meals, gifts, blessings that have flowed her way.  We could not have done this without everyone's support!  At least, we could not have made it through so gracefully and feeling so loved and connected.

Lots of love,
jk

PS I will put up pictures soon!

Off to the Lake!

Hello, everyone,

I haven't posted in a while, so I thought I'd just write a little note to say that the girls have arrived in Madison (Allie and Natalie with Jonathon and Lola), and tomorrow we will all caravan down to Kentucky Lake to visit Tom and Melinda (my dad's brother and his wife), minus the boys (Daniel and Harlan-- they are staying behind to work.  So responsible!).  This summer has already been worlds better than last, so we are thankful every single day for the blessings of the ordinary: garlic harvested from the garden, sunsets, fireflies, hair!

May your days be full of ordinary joys,
jk

"Expect Something Good"

That's Dr. Rixe speaking.  The second best thing about Dr. Rixe is his quotability (with the first of course being that he seems to have made my mother's tumor disappear).  "Expect something good," he said, referring to the official report of the most recent MRI after the tumor board meets next week.  He said that the first review (with he and his team of fellows) appears to be very good, though he called it "complicated."  Of course my dad sat up straighter at that one, but Dr. Rixe explained that because of all her treatments, her scans show many "abnormalities," but none of them appear to be tumor cells.

This is exceptionally good news!  It means that she has now had three scans (two MRIs and one PET) that have been clear, which earned her a whole summer off.  "Forget about us," Dr. Rixe said with a characteristic twinkle in his eye.  "Come back in two and a half months."  So her next appointment is August 3rd, with nothing in between.  No blood work even!  Or, as she told my sisters while sharing the news, "I'm available all summer!"  Esphyr and I burst into "Happy birthday to you!"

We celebrated with a late lunch (Chipotle's at 4:00pm) and then Graeter's with our Graet friends, the Templetons.  Dad had a turtle Sunday for his birthday treat.  The ride home was joyous, as you can probably imagine.  Storms were brewing but none touched us.  My favorite quote as mom spread the news was, "I planted a lot of seeds and now I might get to harvest them."  Here's to bountiful harvests!

Love to all,
jk

Just to Clarify

My dad wanted to be sure that we did not offer false hope: there is no tumor visible, that is for sure.  But this is not a cancer-free status.  It just means that the treatments have done what they were supposed to, things are moving in the right direction, and Mom gets a month off.  Maybe many months off-- we hope!-- but as Dr Rixe put it, we are cautiously optimistic.

Let's celebrate!
jk

Tears of Joy

Well, I can hardly believe what I am about to type, but I have it on good authority (from my Aunt Cindy, nurse extraordinaire) that there is no new treatment plan because there is no tumor visible.  No tumor! The PET scan was totally clear, and Dr. Rixe said that he is not going to treat her because there is no documentable disease to treat.  (His first words when he walked in the door were: "Good news!")

If you're like me, you might be asking, "But what about that PET scan that was clear before the surgery back in October?"  Well, there is that, and because of that Dr. Rixe is being cautious.  However, that was a different case because the PET scan was taken right after a round of chemo and three weeks later, there was visible growth on the scan.  This scan was taken three weeks after the most recent round of chemo and there is nothing!  Nothing to even remark on.  There was a line in the last MRI that Dr. Rixe wanted to watch and look for, but it was not even visible at all in this PET scan.  So he says, "Is there one cell?  Ten cells?  100?  I don't know.  But I cannot see anything."

This is incredible news.  He will check her again in one month (via MRI), but for now, he said, "Go home!  Go back to a normal life."

Normal has never seemed so extraordinary.

Cheers,
jk

Yoga and Stuff!

I got to go to yoga with mom and dad yesterday.  Mom said she had a "different kind of day" yesterday and wasn't feeling 100%, so Julie showed her a relaxation pose after class to help boost her energy and lift her spirits.

She has been doing lots, so if she's a little tired, it's no wonder.  Sunday she caught a concert and went to Marriage Encounter.  Saturday she attended a funeral, the Cinderella production at Shawe, and a charity dinner!  Sheesh!

Wednesday she goes back to Dr. Rixe for a PET scan and a new plan.  Will update!

Love,
jk

PS The picture above is of mom and Esphyr on the bluebell walk in Muscatatuck Park two weeks ago.

Getting Our Garden On

More soon...

R & R

Well, chemo did in fact go well.  There was some misunderstanding the first day and they ended up having a long wait, but as dad said, "We are glad to have each other to lean on."  Tuesday night they dined with two of the Templetons, and Wednesday they drove home through snow!  I mean, I love winter, but I love it in the winter, not in the Spring.  Mom was "tuckered out" but feeling okay.

Today she felt a little queasy, so she took some anti-nausea medicine which helped.  That's always good (when the meds do what they are supposed to do).  I spoke with her this evening, and she was tired but good.  She plans to rest all day tomorrow and watch basketball Saturday!  Go Cats!

Love to all,
jk

Chemo Has Begun Again

Mom had her first day of chemo yesterday.  I haven't heard yet how it went, so I don't really have any news other than I know that they went to Cincinnati, and I assume it went well.  It's old hat by now.  :)

One thing I learned since the last post that I wanted to share is that Dr. Rixe is looking at other possibilities besides the current chemo regimen, not because it is not working but because, as he says, "It's so toxic."  So if he could lower the dose or use something other than chemo, it might be better.  I think it is wise for him to avoid overkill and be open to other options.  He plans to present her case to the tumor board again soon, so I am eager to hear what they discuss.

I will let you know how things are going in Cincinnati as soon as I hear.

In the meantime, be well,
jk

More Good News

According to the MRI, there has been no growth of the tumor.  So!  If it's working, go with it.  That seems to be the m. o. of Rixe, Inc.  Which means that we will proceed with chemo.  She would be eligible for it next Monday, but Dr. Rixe preferred to wait an extra week to give her more time to get her blood levels back up (not that they were too low, but her body just seems to do better with that extra week to recover).  Thank goodness good for doctors like Rixe who understand these things.  Plus, it will be nice that she can come home from Virginia, unpack, settle in, and rest a bit before schlepping to Cincinnati (though it actually would be on the way home-- oh well!).   Anyway, this is just to say that all is well in Rosie Land.

Next time she will have a PET scan, of her whole body, just to monitor everything.  They don't suspect that the tumor has spread, nor is this the type of tumor-- praise be-- that tends to spread, but they just want to make sure.

When I spoke to her this evening, they were on 75 heading toward the daughters with the son in tow.  Life is good.

Be well,
jk

Dr. Rixe and MRI Today!

Mom sees Dr. Rixe today and has another MRI, so I will let you know as soon as I hear.  Then they are off to VA to see Natalie and Allie and their families.  Hooray!

Peace,
jk

Feelin' Groovy

Chemo went well last week (Monday, Tuesday, Wednesday).  Mom got home Wednesday and was a little "weeble-wobbly" but was cheerful and just ready to take Dr. Rixe's previous advice: "Stay home. Stay calm."  That only lasted a little while, as now they are at Kentucky Lake visiting T&M (my aunt and uncle).  They return tomorrow.  I am eager to see them!

Hope you all are well.  It has been a while since I have thanked everyone for the continuing support in the form of cards, rides, thoughts, prayers, and every little kindness we have been lucky enough to receive.  It has made all the difference.

Blessings,
jk

Even Better News

Now that it's over, I can admit that Dr. Rixe had us a little worried with his phone call and insistence on meeting after the low white blood cell count.  But we needn't have worried!  He was reassuring on all counts.

First we saw Dr. Salkeni, a fellow in Dr. Rixe's office, who explained that mom's white blood cell count had gone up to an acceptable level and her neutrophils, a subtype of the white blood cells that does most of the infection fighting, was actually very high, at 2800 (where 1500 is acceptable).  Platelets were still a little low (79-- they like to see them at 100), so they asked her to have blood work done on Friday to make sure she was in good shape for chemo today, and everything turned out fine, so she is off to Cincinnati today!

So the plan is: chemo today, tomorrow, Wednesday, then MRI two weeks from Wednesday, which will be March 16th.  She will also meet with Dr. Rixe that day to go over the results.  One surprising thing I learned from Dr. Salkeni last week was that, since the amount of tumor left is so minute, the anecdotal accounts of how mom is doing and feeling actually tell them more about how the chemo is working than the MRI.  And by those accounts, she is doing amazingly well.

She even SMELLED something, for the first time in a year!  She was able to smell a particular hand soap, and when she told Dr. Rixe this, his whole face lit up, and he said, in his wonderful French accent, "This is new!  This is a very good sign."  He was just so pleased with how she was doing.  He even told her that the low counts weren't too much to worry about and that if she felt like socializing, she could socialize, and if not, "Stay home.  Stay calm."  Apparently, the former has been the case because Friday she hosted a slumber party for her sisters, Saturday morning they went out for breakfast at the Farmer's Market and then shopped downtown, then Saturday evening she attended the Pope John/Shawe Auction Dinner and had a wonderful time (according to my sources).

We went up last night for a quick visit, and she was working away on the laptop, getting Harlan's FAFSA done online.  She is amazing!  I know I keep saying that, but it is true.  :)  And, as Dr. Rixe said at the close of our meeting, "She is strong.  She is very strong."  Indeed!

Love to all,
jk

Numbers Up, Spirits Still High

Mom's white blood cell count climbed steadily last week (from 0.8 to 3.9), so that is a very good sign.  She is still feeling great; she volunteered again yesterday.  Today we go to Dr. Rixe in Cincinnati for a consult.  He was worried about the low numbers, so hopefully this gain will put his mind at ease and we can move forward.  We will know this afternoon what the next steps will be.  Stay tuned!

Three cheers,
jk

Numbers Low, Spirits High

So mom's blood work numbers were a little off this week (low white cell blood count), but you wouldn't have known it from the way she has been feeling.  This week alone, she has gone for a two mile hike, attended Julie Rubio's yoga (with dad!!!), volunteered for the Prince of Peace auction, fixed a beautiful chicken soup with rice, and today she is off to Clifty for a Thimbleberries retreat with her sister, Jane.  Whew!  It's exhausting just to type all that.  But as long as Mom has her nap each day, she is full of energy.

Dr. Rixe was a little concerned about the numbers, so we are planning to meet with him next week and go over next steps.  Because of the rarity of her tumor (fewer than a hundred people in the United States are currently affected by a SNUC), treatments are very individualized.  So we will see how it goes next Wednesday.  In the meantime, I hope you are all well and enjoying this little burst of sunshine we have had.  Spring will come, after all!

Much love,
jk

Guest Post from Ryan Vande Water

This is from Ryan, my parents' Godson: 

Hello Everyone!  

 

I wanted to write a little bit to tell you about something that our family has added to our daily routine for Ms Rosie. But first, some background.  When I was talking to Paul and Rosie a couple weeks ago, they mentioned that they had read an article in the paper about Saint Mother Theodore Guerin and the miracle that had most recently been attributed to her. (the healing of Phil McCord)  I told them that when I had heard of Rosie's tumor, I had immediately asked for Mother Guerin's intercession... mostly because I knew that she had interceded for other people with tumors, and also when her remains were exhumed, her brain was found to be intact... after 50 years!  Julianne and I have a special connection to Saint Theodora... Julianne was a student at Saint Mary-of-the-Woods College (founded by St Theodora) and her shrine is currently located in the church where we got married.

 

(If you haven't heard of Saint Theodora, you can find more information here: http://en.wikipedia.org/wiki/Th%C3%A9odore_Gu%C3%A9rin

and here: http://www.spsmw.org/SistersofProvidence/SaintMotherTheodore/tabid/500/Default.aspx)

 

I know that there are probably a lot of you out there who have felt the same way as our family:  We would love to help more, but how?   Well, let me give you an idea.   Our family has added a small prayer to our evening dinner blessing.  It's very simple, easy to remember, and doesn't ask for much.   After we bless our food, we add 7 simple words:  "Mother Guerin, please pray for Ms Rosie."  Of course, you can say more!  But this one is easy for the kids to remember and understand.

 

I hope that you'll join our family in this simple prayer.

 

Regards,

 

Ryan Vande Water

 

 

PS.  For non-Catholic readers of the blog, I've included links to how saints are "made" and why Catholics say prayers of intercession to saints.

 

More information on the canonization process:

http://www.spsmw.org/SistersofProvidence/SaintMotherTheodore/Stepstosainthood/SisterMarieKevinTigheanswersquestions/tabid/1256/Default.aspx

 

Why Catholics pray to saints:

http://www.suite101.com/content/why-do-catholics-pray-to-saints-a146025

 

Chemo: Course Three, Round One, Day Two

Hello everyone,

I hope you are all well and warm this first day of February.  The worst of the storms seem to have passed us over here in Madison, so Mom and Dad had no trouble getting to Cincinnati yesterday.  They arrived on time for an early start (8am!) for Mom's first dose.  Everything went smoothly, and when I spoke to them yesterday, she had taken a nap on the sun porch, and they were catching up on the blog and enjoying all the comments (and of course my witty prose).  She said she feels good-- a moment of "chemo stupor" here and there, but those only last a second or two and then she's feeling fine again.

Somehow, despite the fact that she is out of town, she is still managing to take care of everyone else.  Example: she had made dinner for us Sunday night, but we were under the weather, so she saved it.  Yesterday, she was directing me from afar, describing each container and its state of preparation, listing out cooking and reheating instructions.  So tonight we had dinner courtesy of Ms. Rosie (and a few others too, I suspect ;) ): ham, sweet potatoes, salad.  My kids loved it.  But they missed their Gram and Pa.  We went up to check on Casey Jones and Marley this morning, and Esphyr was quite upset to find her grandparents gone.  "Where are Grandma and Grandpa?" she kept repeating.  When she finally understood that they were in Cincinnati at the doctor, she consoled herself with: "They will come back.  They WILL come back."

One more day and they will!  Go, Mama, go!

Cheers,
jk

The Latest

 Mom and Dad, New Year's Eve.

Hello all,

Happy snow days!  Mom's appointment with Dr. Rixe this past Wednesday went very well.  One of his fellow's who hadn't seen Mom in a while was super impressed with her strength and how well she is doing.  So that was nice!

As for next steps, her white blood cell count was a tiny bit low, so rather than start the next course Monday as planned, she will start the following week instead.  That will give her a chance to be in the best shape possible for the treatments.

She'll have another MRI before then just so they can see the latest status of the tumor.  Judging by how well she has been feeling and how much energy she's had, I would have to wager that the treatments are working.  What a blessing!  We are enjoying every minute with our sweet Rosie.

Love to all,
jk

 Mom with Esphyr on New Year's Eve.

Mom on Esphyr's birthday, which was January 14th.  Mom made the icing-- score!  She and Natalie are tied for the best icing makers in the world.

Good Times

Hello, all,

Mom continues to do well.  She went to church this Sunday and really enjoyed it.  Her respiratory infection seems to have cleared up completely.  She took a great walk Sunday afternoon (and even felt a little soreness in her legs as a result-- she got a workout!).  They went to Marriage Encounter at the Schroeder's Sunday night.  And she was hanging out with us much of the day yesterday (after getting her blood work in the morning).  Sonny stayed with Grandma and Grandpa while I took Esphyr for her two year well check, and they played Sorry (several games) and ate all manner of delicious soups.  When we got back, Esphyr joined the Sorry game and decided she wanted to "stay with Gram" when I went home.  Sonny of course was in agreement.  But, since it was nap time for all involved, we went home.  :)

Yesterday evening, they paid us a quick visit at our downtown house, so Mom has really been getting out and feeling great.  And Dad is doing well, too.  They are having lots of good time together, and in between times, Dad even gets to work a little.  (haha)  He is also excited that the Chestnuts are back in action.  We've been making music again, which is fun.

Tomorrow they go to Cincinnati for a consult with Dr. Rixe, at which time they will make plans for the next phase.  She has completed her second full course of chemo, so now it will be a matter of deciding whether to repeat a similar course or try something new.  Not sure if she will be getting another MRI at this time.  I guess we will find out tomorrow.  Stay tuned!  And stay warm.

Be well,
jk

First Update of 2011

Mom is doing great after her most recent round of chemo.  She went into it with a bit of a cold, which worsened after she returned home from Cincinnati.  Dr. Rixe called in a Z-Pack for her and that seemed to help a lot.  We got to hang out with her last night and she looked and sounded much better.  We had pizza for dinner and then she played Crazy Eights with Sonny.  She had been busy earlier in the day, too.  Rather than nap, she helped my dad assemble juggle ball sets for his Western Kentucky tour this week.  She folded several loads of laundry, too!

As we were leaving, her sister Jane was on her way from North Vernon for a sister slumber party.  :)  Life is good!