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Updates From Father Roger During His Illness
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May 14, 2009
This post is one Fr. Roger and I (Lisa) have worked on a few times over the past months. It is one in which
Father wants to share some of his thoughts about his illness, about death, and about eternal life. We also must credit Fr.
David Hudgins for adding a few very good words too. First you should know that the MRI Father had last week revealed that
his brain tumor has grown a great deal in the past month. It has crossed over from the right to the left hemisphere and is
infiltrating the brain stem. This means that without a miracle Father’s remaining time on earth is surely short.
Second you should know that Father is really quite comfortable. He is not in pain. He is sleeping much of the
time now but is still very lucid when he is awake and alert. The doctor told him to expect to sleep more and more until he
slips into a coma. The doctors have also told us that we should not anticipate that he will experience pain or great discomfort.
Third you should know that Father is very much at peace with this news. While none of us have given up on a miracle
of physical healing, we are accepting of the greatest miracle, that of eternal life. Throughout his entire illness we have
all diligently prayed that God’s perfect will be accomplished. We believe that indeed His will has been accomplished
all along this journey. It will continue to be so. We haven’t stopped praying for God's perfect will whether
it be Father’s continued presence here or his homegoing to heaven.
So, while the MRI news was kind of tough, we’re okay. Our days now really aren’t much different from
the last two years. We’ve always lived pretty much day by day and that’s what we’re still doing. I guess
what’s different is we are moving a bit more slowly. We spend the early part of the day taking care of Father’s
basic physical needs. His weakened state means he needs a lot of help with even the simplest of tasks. We accomplish these
with a great deal of humor. For example, if you were listening in most mornings lately, thanks to spring allergies, you’d
probably hear one of us saying, “You can pick your friends. You can pick your nose. But you can’t pick your friend’s
nose…unless you’re Lisa and Roger.” Or when we tell Father to hold our hand to help turn him over he might
well recite, “I like myself I think I’m grand. I go to the movies to hold my hand...” OK, we’ll spare
you further details, but you get the idea. And I have to say it was Father Roger who said I had to figure out a way to weave
those items into this post to give you a laugh!
Anyway… we attend to Father’s
physical needs throughout the day. Also throughout the day we pray the Liturgy of the Hours and we pray for all of you. We
do range of motion exercises on his arms and legs. We listen to sacred and classical music a lot. We occasionally even play
the piano despite how out of tune it is. Father naps with one or both cats and rarely does a day go by without at least one
chocolate Frosty. He still tries to listen to the news in the evening and enjoys having us read articles about current events
as well as his emails and cards. Father’s friends from the Oratory and others visit occasionally. His home health
nurse comes by at least once a week.
Like most
of us, Father Roger has some fear of the unknown. But Father also knows and trusts in God’s unfailing love for him.
Over the past two years Father has been very close to death at least three times and he has shared with us how he very strongly
felt God’s love and presence with him during those periods. Even now God is clearly with us all and His presence is felt
by each of us.
Father has worried that his death
might be a disappointment or even disillusionment to some of you. It can surely seem like more could be accomplished if God
were to heal him supernaturally. Yet who is to know what even more might be accomplished on the other side of eternity? Father
Roger has prayed for all of you that you might not grieve as ones without faith and hope in the resurrection. Father has also
prayed that each of you will embrace the Passion experience that not only he has experienced, but that in a variety of ways
each of us must experience. It is often easy to focus on the resurrection and joy of Christ’s triumph over death, skipping
over the Passion of Christ. Father’s illness has in many ways been his Passion experience and while he has mostly focused
on the positive in his posts, he could have as easily described the very difficult parts. It has not been without great effort,
and by the grace of God, at least in part imparted to Father through your prayers, that he has submitted himself to this
cross with humility and patience.
Remember that
at the center of Jesus' mission to save us is His suffering and death. Each Christian must personally participate in the Cross
of Christ; each one of us must suffer and die. This is our final imitation of the Master and as members of the Body of Christ it
is to be expected. Thus for the believer death is something beautiful and holy; indeed it is our path to heaven. It is
a sign of hope which promises resurrection. Of course it is also a great mystery and involves suffering. Obviously Fr. Roger's
cross looks quite different from that of the Lord's, but for those in Christ each of our crosses are bound up into His.
To be at Fr. Roger's cross is a great privilege for us whether we are near or far. To be at his cross is
in fact to stand by the Cross of the Lord because there is a unity between the Head and the Body of Christ. When the time
comes, soon or in the distance, we will stand at Calvary with Fr. Roger and help take him down from his cross and lay him
in the tomb. Eventually all of us will join Fr. Roger and wait for the resurrection. Father's words to you now are those
of thanks and appreciation for all your many prayers, notes, cards, and other expressions of love and support. He promises
his continued love and prayers for you and encourages you to remember something surely each of you has heard him say many
times: “All will be well. All will be well. All manner of things will be well.”
(Julian of Norwich)
------------------------------- May 2, 2009 Hello Everyone, It's
another beautiful spring Sunday in South Carolina with warm sun and a gentle breeze. Father Roger is feeling better. No
fever yet today and only minimal fevers the last four days. As I write he is napping with a cat on either side. It's
been a quiet morning after a bustling Saturday. Bishop Boyea traveled from Lansing for a
visit yesterday. He spent the afternoon with us having lunch, celebrating mass and praying Vespers with Fr. Roger. He
annointed Father who was awake for most of the visit. We really enjoyed our time with
him; it felt like he was a friend who'd been here many times. He was well taught by his mother to help clear the dining
table. :-) Seriously, we were touched by his servant's heart. We greatly appreciate his concern for all of us and
his taking the time to come and visit and pray with us. This week Fr. Roger will have another
MRI to see how the brain tumor responded to the Avastin he received three weeks ago. Depending on the results he may
receive another dose. The palliative effect it can have may make it worthwhile regardless. Father
is much weaker and is asleep much of the time now with brief periods of alertness. He's quite sharp when he is awake though
and is still directing his care. He remains mindful of what is going on in the world and all those he loves. He continues
to pray for all of you. Oh - I almost forgot to mention... Another big thing this week is that
we should be receiving a copy of Father's novel In the Bliss of His Memory for approval. If everything is correct,
it will be able to go on sale almost immediately. Please pray that Father will be able to really celebrate this. And speaking of celebrations, Friday, May 1st was the 22nd anniversary of Father's ordination as a Catholic priest.
Added with his 26 years as an Episcopal priest, he has served God's people for over 48 years. His 74th birthday is also around
the corner on May 17th. We hope to celebrate his forthcoming book, ordination anniversary and birthday later this month. As always, many thanks for your continued love and prayers. ----------------------------------- April 26, 2009 Hello Everyone, Fr.
Roger has been very ill this weekend. Actually, he consistently ran a low grade fever all week and midweek we went to the
doctor to get him checked out but nothing stood out as the cause. Then Friday night his temperature began rising. With his
doctor's help and encouragement we've managed to keep him at home. He's started two antibiotics and his fever
broke late yesterday. He had a normal temp for a few hours and now it's low grade again. Fr.
Sandy (from the parish he was working at here in South Carolina) came over to anoint him and just be supportive Saturday evening.
He arrived shortly after Fr. had begun to sweat profusely and his fever had started to break. We gave him a bath
and fresh bedding. Then Fr. Sandy annointed and prayed for him. Fr. Roger woke up enough to say hello and be aware of our presence. Today he is resting peacefully. He's mostly sleeping but he wakes up every now and then and says a few words.
We just finished praying part of the Liturgy of the Hours and he offered some of the responses. He says he
might like a Frosty a little later. He looks so much better than yesterday. Winston and Sarah
are alternating taking catnaps at the foot of his bed. Yesterday they seemed to sense it was better to sleep on the floor and
they did. Winston camped out under the head of his bed; Sarah kept vigil by the foot of his bed. Around midnight
Sarah decided it was safe to claim her usual night time slot between his knees. Winston was jealous but he didn't
raise a ruckus. Instead he settled himself in Lisa's lap, or should we say across her shoulder, chest and lap?
He's really getting to be a big cat! It is a beautiful, warm, sunny spring weekend. Adam (one
of our helpers) and James (from St. Andrew's college group) came over and washed and waxed Fr. Roger's van yesterday.
It looks great! Today Lewie's busy grading his students' final exams with the NFL draft on in the background.
I'm (Lisa) just thankful today has been peaceful and quiet so far! Between giving meds and fluids, I'm catching up
on the laundry and sitting by Fr. Roger with the laptop trying to answer a few emails and writing this post. As always thanks for your prayers and support. Love from all of us to you. ----------------------------------------- April 19, 2009 Happy Easter!!!
Dear Family and Friends, We hope you are having a joyous Easter season. Our time has been challenging
but good. As Father Roger often says, "I'm doing amazingly well considering how ill I am." You may have
noticed from the pictures we put on the homepage, he was able to attend the Easter Vigil Mass. We vested him and he concelebrated
as best he could. At the end the other priests came to the side of the altar to stand behind Father and
they all said the final blessing together. Despite the difficulty he has raising his right arm, he lifted it high to
bless the people. Of course the parishoners were very glad to see him and he greeted several after the vigil ended. It
was a joyous event for Father. On
the challenging side, on Holy Thursday we received a report from Father's Duke doctor about his latest MRI. The
news was pretty bleak. The original tumor site remains stable, but there is new growth in another part of the brain. Tumor
cells have also spread to his spine. Father's doctor did not recommend chemotherapy; his
body is too weak. He did recommend that Father take more Avastin. The Avastin not only has a small chance of stabilizing
the disease again, but can also just make him feel better, i.e., less fatigued and somnolent. (Avastin
is not a chemotherapy drug but is an anti-angiogenic agent. The simple explanation is that tumors create a network of blood
vessels, a process called angiogensis, that feed it oxygen, nutrients, etc. Avastin is thought to inhibit the blood vessel
formation which thus starves the tumor.) Father took a few days to pray and decide what he wanted to do. In the end he decided
he would try Avastin again and so on Thursday of this past week we went to the infusion center and he received a big
dose. In a month he'll have another MRI to see what's happening and then decide whether to have another dose. So, that's the story here. As Fr. Roger has said, "The recent MRI news was a real blow,"
but as usual he has handled this with exceptional grace and courage. He is very tired but is in pretty good spirits. We are
after all Easter people and our hope is where it should be. Either God is setting the stage for a miracle on earth that no
man can deny or for the joyous homecoming of His beloved servant. We will rejoice in either. Please
continue to pray for us all. We know you will and we so appreciate it. ----------------------
April 3, 2009
Hi
Everyone, As we head into Holy Week Fr. Roger especially sends his
love and prayers. He is doing reasonably well with both good and not so good days. We still struggle with a low grade fever
almost every afternoon, muscle spasms in his legs, and tiring so very easily. But overall Father is still improving, be it
ever so little. He has his "creative moments" but he still manifests his brillance, compassion and
wit. Since our last post he's had outings to the dentist (with a good report) and a concert/farewell
party at St. Andrew's in Clemson. The assistant music director is moving to a new church and Fr. wanted to attend
his send off. The concert by the adult and junior church choirs was wonderful and it was great to see so many parishoners
and friends on a beautiful Carolina Sunday afternoon. We're planning to attend Holy Week
services as Father's energy allows starting with tomorrow's vigil mass for Palm Sunday. Father is planning
to vest for the Easter Vigil next week and concelebrate as much as possible. Please pray for his strength
to do so! We hope to post some pictures afterwards. Not much else new to report so Father says
this might be a good post for telling you more about our helpers. We've mentioned before that after his
last long hospitalization we knew we were going to need more help at home so we started with hiring a couple of young people
to help us out at night. Now we actually have five helpers: Ginny, Adam, Tim, Mike, & Molly. We met Adam, Tim and
Molly through the university student fellowship at St. Andrew's Parish at Clemson. Ginny and Mike are from Lewie's
university, where he is a history professor. Ginny is a young woman
who graduated from Anderson University this past December. In the fall she will be going to graduate school majoring in forensic
science. She's a soccer player from Fenton, Michigan and has fit into our household like she's always been part of
the family. She stays with us at night Sunday through Thursday. Two or three mornings a week she stays late
so Lisa can run errands and take care of bills, etc. She's wonderful with Fr. Roger and has taken on helping him
with many of his OT and PT exercises. In the mornings you'll find her up on the side of his bed stretching his
shoulder and arm. Most nights you can find her warming moist towels in the microwave for Father's legs. The
moist heat and massage help relieve his painful muscle spasms. (In general the muscle spasms are lessening but they still
bother him a great deal.) She also is doing a great job of helping keep the laundry under control and has contributed
greatly to a decrease in dust throughout the house! Adam, who Fr.
Roger confirmed at last year's Easter Vigil, was staying with us at night on the weekends, but his
college coursework and an upcoming mission trip are demanding a lot from him now so he's no longer staying overnight.
He still comes over about once a week to visit and sometimes assists in giving Father a "serious
bath", i.e., getting his hair washed and some of the finer grooming details one does perhaps weekly instead
of daily. Adam's wit matches Father's so they always have a jovial time. He shares the discipline of praying the Liturgy
of the Hours so they sometimes say prayers together too. Tim, a native
of the Charleston area, has just started staying on Friday and Saturday nights every other week. He is
a nursing student and has cared for a quadraplegic in the past so he's well equipped to help Father move around in the
bed and in and out of his wheelchair. We're all enjoying getting to know our new quiet friend. Molly is a very sweet Clemson University undergraduate who plans to be a physical therapist. She has started coming over for
a couple of hours two afternoons a week so Lisa and Lewie can get out of the house and get back to exercising again.
Lisa likes to swim at the neighborhood swim center and Lewie likes to walk the track. Molly is learning more of Father's
therapy exercises so we're all exercising at the same time. Mike is our newest
addition and he's now staying with Father every other Friday and Saturday nights. He is a Christian Theology
student at Anderson University and will be going to seminary next year. He's married and has a son and daughter. He's
finding this to be a great opportunity to hear a lot of wisdom from the seasoned pastor. Father says he's enjoying sitting
up late talking about his experiences and drawing out Mike's hopes and expectations. It's
been great having new faces and energy in the house! They're tremendous blessings to us, but are also being blessed.
It is kind of amusing how Father has taken to a schedule of napping in the late evening so he can be awake to talk to
his night helpers and catch up with them when they get here. Only problem now is what will we ever do when all of
these guys head off for new ventures in the summer or fall! Well, God will provide! 'til next
week...... ----------------------------------- March 19, 2009
Hello
Everyone, A belated Happy St. Patrick's
Day to you! We hope everyone had a fun day and enjoyed a bit of Irish tradition somewhere along the line.
Seems hard to believe it's been almost a month since our
last post. Except for a wonderful day out of the house last week, there's not much going on here that hasn't already
been mentioned. Nonetheless, Fr.'s first day out of the house since November 3rd is worth sharing!
Last Thursday he had an appointment with an ear, nose and throat
doc over at Clemson. We packed him up in his power chair and van and took off for the appointment. Our friends Jim and
Elizabeth Woodruff met us at the doctor's office to help navigate the parking lot and doors, etc. The appointment didn't
take long at all, so afterward we stopped by the office of St. Andrew's parish, where Fr. Roger was helping with masses
and visiting the sick before he himself became ill. Several of the staff came out to the van to visit with him. Jim and Elizabeth piled
into the van and went to Sonic with us for hot fudge sundaes, one of Fr. Roger's favorite treats. When we started back home Fr. Roger asked if we could just drive around for awhile.
We drove through part of the South Carolina Botanical Gardens which are maintained by Clemson University. Despite
six (yes, SIX!) inches of snow and lots of ice two weeks ago, we've since had enough warm weather and sunshine to bring
the usual spring trees and flowers into bloom. The Bradford pear, red bud, and dogwood trees are in full force as are forsythia
bushes, daffodils and even a tulip or two. We also veered off the main route home for a short distance to Pendleton,
a small, quaint community between Clemson and Anderson. It was a summer home to many wealthy Charlestonians in the
late 19th century so it has some beautiful old victorian homes as well as a small town square with a Farmer's Hall. As we neared home, Fr. asked if we could perhaps go to mass. Our neighborhood church
has a late afternoon mass on Thursdays so we did. It was a long afternoon and in retrospect we probably shouldn't
have done quite so much, but it was a beautiful, sunny day and we had a very nice time. Fr. Roger pretty much slept the
next three days to recover, but he said it was worth it. So,
Fr. Roger's strength continues to very slowly improve. He continues to have his sights on making it to the Easter
Vigil and we think he will. As always Fr. Roger sends his love and prayers and his thanks for all your continued
prayers. --------------------------- February 28, 2009
Hi Everyone,
It's hard to believe, but we've been home now for seven weeks! Thankfully
the time has been at least relatively uneventful in terms of medical problems. Fr. Roger is still spiking fevers every now
and then, but none high enough to merit a trip back to the hospital. He is very slowly but still surely regaining strength.
As he says, the long hospitalization from November into January was definitely the steepest rollercoaster drop he's experienced
since his surgery May 2007, and recovering from it is definitely not a small task. He's still working hard to regain
his balance for sitting and to regain use of his right arm and leg. He's even moving his left leg just a tiny bit
too. He is having a lot of muscle spasms that are pretty painful but respond to exercise and a small dose of a muscle relaxant.
The power chair has proven to be great for getting him out of the bed and keeping him in a comfortable position several hours
most days.
It took a bit of work to get his medications
regulated to avoid his being too sedated and thus create problems with swallowing and mental acuity. His swallowing is
consistently better and he is able to eat about one full meal of soft foods over the course of the day now. His
mental acuity is much better too though he sometimes renders some interesting stories when he has a fever.
Some good news from this week is that his most recent MRI (Monday, 2/23) was still stable with no significant
progression of the brain tumor. This is amazing since he has not had any treatment since the first of November! He will
not be taking any chemotherapy or other treatment at this time. He might restart later if the tumor begins to progress
and his body is strong enough. But for the time being we are focusing on strengthening his body ... not a small
task after more than a year and a half of treatment with very powerful chemotherapy drugs.
Another great piece of news is that an almost lifelong dream of Father's is about to come to pass.
Did you know Fr. Roger has written a wonderful novel? He worked on it off and on for the last 40 years! It's a powerful
story about a priest and...... (drum roll)... it is about to be published. You can be sure we will add a post and info about
where to get a copy the day it becomes available. He's been practicing writing his name for autographs and his signature
is looking pretty good again! This is really a great blessing for him and we're all very excited about it.
Well this week brought the beginning of Lent. One of his priest brothers brought ashes and communion to the
house on Wednesday. Father may, or may not, be able to sing the Exsultet at the Easter Vigil this year (as he did last year),
but our goal is that he at least be able to attend if not concelebrate. He's recently realized he missed Thanksgiving,
Christmas, and New Year's Day this year and we may soon have to have a celebration that embodies all the holidays
he missed! Regardless, we're praying he won't miss Easter!
As always please continue to keep us all in your prayers. Fr. Roger almost daily says it's yours prayers that
have sustained him thus far. He loves and appreciates each one of you and daily remembers you in his prayers.
-------------------------------
January 22, 2008 A very quick update...as you can
imagine caregiving is a more than a fulltime job these days. Fr. Roger is doing reasonably well. Our home health support keeps
us very busy with nursing visits, OT, PT, and ST. On Friday the speech therapist gave Fr. the go ahead to eat whatever
he wants with only a couple of exceptions. He's swallowing much better and is eating more so we're starting to decrease
his food supplements. He's enjoying being up in his powerchair most days. He tires by late afternoon but as he says, "I'm
doing quite well overall." On the not so good side, all of us in the household have
contracted an upper respiratory illness. With the doc's help, we're trying to keep Fr. out of the hospital and so far so good.
Robitussin to the rescue! We've added two helpers who alternate staying with us to keep an
eye on Fr. through the night. This is working quite well. Fr. feels reassured by their presence, they have some
reading/study time, and Lisa and Lewie are getting more sleep! Thanks for keeping us
in your prayers! -------------------------------------------- January 10, 2009 We are at home! We were finally
able to bring Fr. Roger home yesterday. It was a somewhat stressful transition with Fr. being moved around so much and
experiencing lots of different kinds of stimulation than found within the four walls of a hospital room.
We were also bombarded by medical equipment and home health folks coming by to reinstate home health services, etc. But all
things considered it was definitely a red letter day. Fr. slept exceptionally well last
night and didn't arise until we awakened our "sleeping handsome" at 9:30 a.m. this morning. He was quite happy
to have oatmeal for breakfast and has had a very peaceful day today. His powerchair was re-delivered early this afternoon
and he especially enjoyed having us get him out of the bed and in the chair for a short while. (His first powerchair had some
mechanical problems, wasn't the color he ordered, and actually didn't have all the features it was supposed to have.
We could have lived with the color but not the other problems. So the medical equipment company started from scratch and the
new one has everything right! They've been waiting for him to get home so they could deliver it. Mostly we're just happy
to have a very comfortable option for Fr. besides the bed.) We'll soon try to
get some pictures together and post them. In the meantime we're settling in back home, still opening
Christmas cards, and keeping Fr.'s discipline of praying the Liturgy of the Hours each day. Next week OT/PT/ST will start.
The day always seems too short....... Many thanks again for all the beautiful cards and prayers.
Fr. Roger sends his love and promise of continued prayers for each of you. ------------------------------------------ January 7, 2009 Just a quick note....... Fr. was not
able to come home Sunday. He spiked a high fever early in the morning. In the end the culprit was pneumonia in his lower
right lung. We ended up grateful for the logistical problems that had kept him from being discharged two days earlier.
It would have been miserable to have had to take him back to the hospital after only being home a couple of days. The pneumonia is already breaking up and the doctor says if he continues to improve and nothing new surfaces,
he's comfortable discharging Fr. Roger this Friday. So we pray for no new complications and that indeed he will
be able to come home Friday. On the home front.... a huge tree in the front yard gave way during
a bad storm here last night crushing our Camry! Thankfully Fr. Roger's new van didn't even sustain a scratch, but the Camry's
totally trashed. Waiting on the insurance adjuster..... Anybody want to guess what's going
to happen next? -------------------------
January 2, 2009 - Happy New Year! Hello Everyone, Fr. Roger sends his greetings for the New Year. His
good news is that barring no new happenings he is scheduled to be discharged from the hospital on Sunday. After almost two
whole months, his discharge is none too soon for any of us! He was to come home today but the home health group we've been
using is short staffed for the holidays and cannot provide services until Sunday. Since we need infusion care
from them we have to wait. We'll take Sunday though! Fr. is fragile but is doing reasonably well.
He is completely alert now and most of the time his mental acquity is quite sharp. He's of course back to being very
attentive of everyone around him. He's also able to participate in the Liturgy of the Hours again. He does tire easily and
by evening he sometimes gets a little "creative". The speech therapist has approved a soft/pureed diet for
him so he is eating and drinking a little more each day. Tomorrow will be his last day of receiving nutrition through an IV.
He's getting some nutrition with the feeding tube that was placed a little over a week ago. Combined with what he is eating,
his nutritional needs are being met. His stomach is bothering him a good deal, i.e., the long term problem he's had with reflux. But
he's hungry again and we're mostly able to keep his stomach feeling pretty good. He's regaining use of his right arm and leg
and is able to help us move him around in the bed. He's looking forward to being able to be up in the recliner or his power
chair when he gets home. I think it is fair to say that except for his eating, after such a long ordeal, he is getting close
to his pre-hospital level of functioning. He was seen by an infectious disease doctor Christmas
week and this doctor said he believed Fr.'s fevers to be drug induced since none of the tests to identify a source of infection
yielded any positive results. He recommended discontinuing all antibiotics and indeed after this was done Fr. stopped having
fevers and felt considerably better. We're thankful for this and pray his current status continues. He had an MRI Wednesday but we don't have any results yet. We really aren't expecting much change in the brain tumor
because of the continuing improvement in functioning that we are seeing. Of course we're eager to hear from his
Duke physician on this early next week. We've been making our way through the many Christmas cards
and greetings. He sends his many thanks for the beautiful cards and thoughtful notes. He asks that you continue to keep him
in your prayers. You are certainly in his. Happy New Year from all of us! --------------------------------------
December 23, 2008 Merry
Christmas! Hello Everyone, It looks like we
will not achieve our goal of being home by Christmas. Fr. Roger is having problems with digestion and reflux. He's still spiking
fevers and so far the cause of the fevers hasn't been identified. Please pray that these things will be resolved so we can
bring him home very soon. On the brighter side, he is quite alert and talking! The nurses are teasing
him that he's become "Chatty Cathy." He seemed to finally "wake up" this past Thursday and Friday
and has consistently been alert ever since. Friday he spent some time telling us about
what he's experienced the past few weeks. It's hard for him to believe he's been in the hospital since November 6th. Surely
for the best he does not remember a lot of it, but he does remember a visit from Fr. Jerry Vincke and Fr. Eric Weber
and also from Tom Stempky and Bob Gorse (who came down to watch over him so Lisa and Lewie could make a fast trip to
New Orleans for her to participate in commencement at Tulane). One thing he asked us to share is that while he's experienced
this period as a difficult endurance race, he's also been very aware of the Lord's love and presence. He says he's strongly
felt God's presence and love for him throughout this time. Once we realized he wouldn't be able
to come home this week, Lewie gathered some things to decorate his room. We've put up gold garland, cards,
a nativity scene, and a few ornaments. Brother John, from the Oratory, brought him a beautiful glass globe with the Holy Family
yesterday. It's made of cut glass and can be lit at night. It cast a beautiful glow in the room last night and the nurses all
say his is the prettiest room on the floor now. He's in good spirits and sends his
love, prayers, and hopes for a very Merry Christmas to each of you. Indeed we all wish you a Merry Christmas! --------------------------------------
December 14, 2008 Hello Everyone, Fr.
Roger continues to hang in there and fight the fight. Hopefully he will be coming home the end of this week or the first
of next week. That's the plan. He's still sleeping a great deal but seems to continue to be a
little more alert every few days. Both yesterday and today he was quite alert the majority of the day for the first time. He's
still working on Frostys, yogurt, and ice chips when he's awake enough to do so. Today he had a feeding tube placed through
endoscopy. This will allow him to get better nutrition than he's been getting intravenously. He can also take oral
medications through it and most importantly, he can come home. He's a little uncomfortable tonight but his pain seems
to be relieved with a mild pain reliever already administered through the feeding tube. They've already started formula
through the tube too and so far so good. Now if we can only figure out how we're going to keep Winston from trying to get
a sample when we get Fr. home. Sarah's very well behaved about such things but Winston is likely to be a different story!
Fr. is definitely very aware of what's going on and is directing his care again. He's still
struggling to talk but he is usually able to express his needs with short phrases and nodding his head yes or no.
He is still having difficulties moving around but he is moving his right side a little more and it's likely we'll
be able to have some physical, occupational and speech therapies for at least a little while when he comes home. As always thanks so much for your prayers and expressions of love and concern. One of the brothers from the Oratory joked
that Fr.'s Christmas mail is exceeding all the rest of the Oratorians put together! We are trying to open a few cards
every day and it may take us awhile, but we'll eventually get through them. They do cheer him and he loves to hear
what's happening in everyone's lives. So thank you for all the Christmas greetings. Hopefully Fr. will be able to help us
post one from him soon. Love from all of us! -------------------------------------------
December 5, 2008 - FR. SAMPLES
A FROSTY! Hi Everybody, Fr. Roger is continuing to wake up
a little more. Wednesday night he became quite a bit more alert and began to speak much more clearly. Thursday morning
he talked with the doctor for several minutes answering several questions and following some simple commands like open/close
your eyes and mouth. He told us, "I feel strange but very well," and, "It's great to be alive." He
continues to sleep most of the time, but now he is pretty easily roused. When someone enters the room or specifically
addresses him he not only makes eye contact but also greets that person and usually will talk for a couple of minutes.
He actually startled his nurse today (who had not been assigned to him for several days) when he called him by name and
asked how he was doing. Today his doctor ok'd giving him small amounts of ice chips, ice cream,
and yogurt. So we gave him a few ice chips three or four times. Then this evening he was very alert so we gave
him just a little of a Frosty from Wendy's. In case you have missed this bit of info, Fr. Roger LOVES chocolate
Frostys. You'd have thought he was in paradise from the expression on his face. It was precious but also hilarious.
He is running a bit of a fever and so he's back on an antibiotic. We don't yet know
what's causing the fever but we do know his lungs are fine (good chest xray). We're waiting to hear about blood and urine
cultures. Well, you gotta know he's managed another "Roger Rally" if
he's back on the Frosty trail! He does remain pretty fragile. His fever is worrisome and he's just barely beginning to
take in something by mouth. He's moving his right arm and leg, but not on command. All that said, we're still much further
along than this time last week. Maybe we're going to be able to get him home before Christmas after all! Love and prayers from all of us. Many thanks for all your love and prayers! -------------------------------------------
November 28, 2008 Dear Family and Friends, Fr. Roger continues to hold his own. The first part of the week he was less responsive for a couple of days. But
last evening he started perking up a bit more and today he was definitely more responsive. Today when someone entered
the room or made a noise he almost always opened his eyes. For the most part he kept good eye contact with people and
tracked their movements about the room. When spoken to he always tried to speak. He seemed to be engaged as we gave him a
short version of what's been happening to him. He also seemed interested to hear what's been going on in the world the last
three weeks. Actually he repeatedly tried to talk to us most of the day and evening. We
could make out a few things but most of the time it was pretty hard to understand him. He did seem to reliably
respond with, "un-huh" and "un-uh" for yes and no. Also his speech seemed to become just a little
clearer in the late evening. He told us he loved us and said the John Rutter CD of the Requiem and Magnificat
we played for him was "very beautiful." Other good news of the last couple of days
is that he had an MRI and EEG on Tuesday. The MRI showed that the tumor remains stable, swelling is down and
there's been no bleeding in his brain. The EEG looked ok too and he hasn't had any seizures since last week. This news led
the docs here to rethink what might be keeping him essentially semi-comatose. His IV anti-seizure meds may be part of the
problem. His blood levels of these have dropped and he's definitely more alert. Since he's more alert and not having
seizures they are not increasing the doses at this time. On the negative side an infection may
also be contributing to his sleepiness. He has started running a fever again so he must have infection somewhere. Two days
of antibiotics and the fever remains just under 101 and no test results identify the source of the infection yet. For the most part he seems pretty comfortable now. He's breathing quietly and looks peaceful awake or asleep. When
we asked him if he was hurting or uncomfortable today he said, "un-uh." So...
Fr. keeps moving forward on this journey. Many thanks for your continued prayers. If he could speak to each of you right now
he'd surely tell you how he is convinced it is only your prayers that continue to sustain him. From
all of us, many thanks for your devotion to prayer and many expressions of love. ---------------------------------- November 22, 2008 Dear Family and Friends, We're relieved to be able to share that Fr. Roger seems to be very slowly recovering. He was moved
to a regular hospital room earlier this week. Each day has had its ups and downs, but the general trend is upward. He's
still not entirely conscious, but is getting a little more alert every day. He's responding more and more to questions and
occasionally tells us something with a full sentence. He's great at expressing "ouch" when something hurts him.
He seems really distressed by spasms in his belly and we're anxious to find some resolution for that. He also had
considerable seizure activity midweek but a change in medication appears to have resolved that issue.
He's still getting all his nutrition and fluids intravenously, but he's managing his own secretions well and today he did
swallow a couple of very small ice chips without any problem. Today he also tolerated range of motion exercises well and
his extremities were much more relaxed. His lungs are clear and strong; the pulmonologist signed off his case. All
his vital signs are stable and he's off antibiotics now. His Duke docs have encouraged us
to be patient. They suggest that due to his age and the amount of trauma to the brain he's experienced from surgery,
radiation, and chemotherapy, it will just take awhile for him to recover from this latest ordeal. All the things he is
doing now bode well for him. Also, he did have a cat scan on Monday and it confirmed that he has NOT had any bleeding
in the brain (something we were pretty concerned about since he bled so much from his nose and sinuses). Fr. Roger clearly remains very weak and he's fragile, but progress is being made. Thank you for
your faithfulness in prayer and concern. We hope each of you have a very Happy Thanksgiving! -------------------------------------- November 14, 2008 Good News! Fr. Roger was taken off the ventilator late this morning. He is breathing just fine. He's starting to move
around a little and has also tried to talk. His first efforts were pretty funny. This afternoon the physical therapist
caused him some discomfort while doing range of motion exercises with his left arm. His attempt to say "ouch"
sounded more like a growl. One might have thought he's been hanging out with the cats too long. Later it sounded like
he was asking for water. Unfortunately the nurse's answer was no, not yet, but maybe ice chips tomorrow. He's very tired
and mostly sleeping, but he's at least a little aware of what's happening and is moving a little. He's receiving
nourishment intravenously right now but will soon have a swallow test to see if he can start taking anything orally. He certainly still has a ways to go, but thanks be to God for the improvement we have! Well,
unless something important happens we're going to take a break from the website for a couple of days and take care
of some normal life things. Have a good weekend and check back next week for the next update. --------------------------------
November 12, 2008 Hello Everyone, Fr. Roger is doing reasonably well. He is no longer bleeding from his nose or sinuses and the ENT gave the go
ahead for removing the ventilator. The pulmonologist did another bronchoscopy today and gave the go ahead too, but Fr. has
not managed the weaning process entirely well so he's still on it. He is essentially breathing room air on his own, but
his respiration rate is higher than they'd prefer. He also has a lot of secretions so the ventilator still plays
an important role in being able to suction fluid from his lungs. The respiratory therapist said he is "borderline"
for removing the vent and so they decided to give him a little more time with all the settings at their lowest and will try
again in the morning. All his other systems are working well. They've lowered the level of sedation
just a little and he opened his eyes more today, but he is still pretty heavily sedated to keep him comfortable. Thanks for your continued prayers. -----------------------------------------
November 10, 2008 Hello Everyone, The
good news this evening is that Fr. Roger is for the most part stable. He is doing quite well for being on a ventilator.
At this point he is breathing on his own as much as the ventilator is breathing for him and is basically breathing room air.
This is good news because it suggests his lungs are working pretty well and he did not aspirate as much as had been feared. It
also means he will have an easier time being weaned off it. He no longer has a fever (which came up yesterday). He's responding
well to antibiotics and his lungs are sounding better. At this point we are waiting
for a consult with an ear, nose and throat doctor who can hopefully tell us if Fr. Roger still has any bleeding going on in
his sinuses, nose, or throat. If not, then he will be weaned from the ventilator. It turns out the anti-coagulation therapy
he was receiving caused his blood to thin so much he bled spontaneously in his nose and sinuses and this too contributed to
his problem. He is still heavily sedated to keep him comfortable and from fighting with the ventilator,
but all his body systems seem to be working ok. So things are looking up. Hopefully tomorrow he can start coming off the vent. Thanks for all the prayers! --------------------------------
November 9, 2008 Dear Friends and Family, As seems to have often been the case in this journey, shortly after receiving good news, Fr. Roger has had a
significant problem develop. And so the rollercoaster ride continues. Thursday he began to have severe abdominal
pain, which as far as we still know was/is gas. The more severe problems that could cause such pain have all
been ruled out. But the pain still continues and yesterday he developed a very serious different problem. Fr. was given a nasogastric tube to try and relieve some of the gas. The NG tube ended up causing bleeding
in his throat. This lead to a large blood clot forming at the base of his trachea nearly closing his airway. They were
able to break up the clot and did a bronchoscopy to clean out a lot of small clots and fluid from his lungs. He will
be on a ventilator for a couple of days and then they will try to remove it. He is heavily sedated so he can be more comfortable.
Of course he is in intensive care and cannot have visitors or calls. Sometimes it is hard to
understand all that has happened to Fr. Roger in the past 18 months. Lately we've talked a lot about this journey and have
encouraged him that if he is weary, the Lord waits with open arms for him, "the son whom He so infinitely
loves" (as I'm sure so many of you have heard him pray). But we also have assured him that if he wants to keep fighting
we will fight with him. He's shared that he is pretty tired, but in his heart he still feels that God has more work for him
here. And so we continue to follow his wishes regarding his care and treatment. It's worth noting
that in true Rogerian fashion, it turns out the members of the Rapid Response Team that worked on him
yesterday "just happened" to include the head of the respiratory therapy department and other top nursing
staff. The pulmonologist was in the hospital at the time of the crisis too. Not bad for very early on a Saturday morning.
God provides. Well, this post has more specific information than Fr. Roger often asks
us to share, but frankly though he is relatively stable this morning, his situation is so serious right now that it seemed
unfair to not let those of you who love him so much know where things are, especially on the heels of such a positive post
on Monday. Fr. has certainly been in a tight spot more than once in the last year and a half. He's become rather famous for
the "Roger Rally." So we keep praying. We know you too will keep him in your prayers
and thoughts. We'll try to keep you updated on how things are going. -------------------------------------
November 3, 2008 Dear Family & Friends, We are so sorry it has been so long since we posted an update! Frankly, as I shared in my August post, the
summer was long and hard. It turned out that the beginning of the fall was quite challenging too. I did drop one of my
chemotherapy drugs (CPT11) because the side effects were so miserable. I'm still quite fatigued and occasionally have
some "innovative ideas" that those around me consider just plain loopy. But I am overall doing quite well and
asked Lisa to add something short here this evening. We will do our best to get a long update posted with several new
pictures in the next few days. In the meantime, please REJOICE with us over today's good
news! We just returned from an appointment at Duke and my latest MRI again indicated the tumor in my brain is stable.
There's also no change in the amount of swelling, no evidence of bleeding, nor any other new problem. With
six stable MRIs in a row, I can skip December and have my next MRI right after the first of the year. I'm going
to continue with my current chemo regime of Avastin every two weeks and Carboplatin once a month. In fact, day after
tomorrow is a chemo day for both drugs. This regime probably is contributing some to the fatigue I have, but
the docs seem to think my tiredness may be more related to sleep deprivation than anything organic. So another piece
of news is that I'm joining the ranks of cpap users hoping to soon find a postive change in my energy and mental acuity.
I have some other new paraphernalia: my long awaited power wheelchair and a wheelchair van outfitted
with an automatic door and ramp, etc. I'm looking forward to getting out a bit more as my energy level allows. We'll
post some pictures of both soon. Thank you so much for your faithfulness in prayer and concern.
I am convinced it is only because of your prayers that I am doing as well as I am. May God abundantly bless each of you. Love and prayers, Fr. Roger ---------------------------------------- August 16, 2008 Dear Family and Friends, Hello everyone. I know it's been a long time since we posted
here. Our apologies as well as thanks for understanding that the challenges of daily life sometimes result in email and
posts becoming a low priority. July was a difficult month and we just weren't able to get to the internet much. I am happy to say that I'm doing fairly well at this point. The best news I have to share is that an MRI
this past week showed the brain tumor remains stable - thanks be to God! More frustrating news is that the recommended
chemo drugs I'm taking continue to cause a lot of wear and tear on my digestive tract and energy. They also require more careful
monitoring, i.e., frequent blood draws, and an increase in other medicines to control GI problems
and keep seizures under control. And so daily life has become more challenging. As you know from
previous posts I had a rough time while in Durham. What started out pretty good fell apart very fast due to
either a virus or side effects from the chemo drugs I switched to at the end of June. After a good week in a rehab
unit, I had to be transferred to the main hospital where I spent 5 1/2 days in the ICU with severe diarrhea and
seizures. After a few more days on the neuro floor I was discharged and we moved into an apartment until I was strong enough
to travel. Thankfully I don't remember much about it. We're finally back home in SC and are returning
to a good routine. My OT and PT are back on the scene. I lost all the movement in my left arm and leg again during my hospitalization.
But once more I'm starting to be able to move them a little and I'm sitting up pretty well now. We're back to working on getting
a power wheelchair that will allow me to get out of the bed and house more. I'm still taking
chemotherapy every other week (Avastin and CPT 11). I also receive Carboplatin once a month. All of these
are given intravenously as an outpatient now. The doctors decreased the dosage for my most recent cycle and while
I've still had some problems, the side effects haven't been as intense as in July. We had not truly appreciated
just how few side effects I've experienced through all this until I started experiencing significant problems with my current
regimen. With the tumor stable and the aftermath of being so sick while in Durham subsiding, I'm beginning to be able to have
a better picture of how the chemo drugs are/are not effecting daily life. I ask for your prayers as I decide whether to continue
taking these drugs or perhaps try something different. I hope each of you had a wonderful summer.
I continue to hold you in my heart and remember you in my daily prayers. Thank you so much for your prayers and kind
expressions of care and concern. It is your prayers that continue to sustain me and I cherish each and every one. As I continue to regain strength I will try to get back to answering emails. Lisa will try to post some new pictures
this week too. Love and prayers, Fr. Roger ---------------------------------
July 6,
2008
Hello
Everyone,
Fr. Roger is doing better. He's sleeping a lot, but is alert and joking with the nurses when
he's awake. The best news is that a CAT scan showed nothing new with the tumor. None of the tests have
shown a serious infection though that is what they originally suspected. No seizures and no more fever. They're
now thinking his problem was primarily a serious drop in platelets and white blood cells due to the chemotherapy drugs he
received last week. It also wreaked some havoc on how he metabolized some of his regular medications. We've
learned he also has some blood clots in both his arms and legs so he's begun anti-coagulation therapy again. Everything has
a purpose, and finding out about the blood clots before they became a life-threatening problem is certainly an important thing
that's come out of this crisis.
He sends his love and prayers and gratitude for yours.
---------------------------------
July 4, 2008
Dear Family and Friends,
Please keep Fr. Roger very much in your
prayers this holiday weekend. He's been side-lined from rehab with some type of infection that has made him
quite ill. Right now the doctors are treating him aggressively with different antibiotics and he is responding.
But he can use the extra prayers. Thanks so much! We'll try to keep you posted on his progress.
Lisa
------------------------------
June 29, 2008
Dear Friends and Family,
Here we are at the end of the month of June already and what a month it has turned out to be. I am in rehab at an affiliate
program of Duke. It is going quite well. Both my therapists and the nursing staff are very helpful and supportive.
We're hopeful I will be able to get at least a little more use of my left arm and leg. While at first they were reluctant
to admit me, everyone is pleased to see there's at least some potential. In the meantime I'm getting outfitted for an
electric wheelchair with a good support for my left arm too. I'm going to be here at least another week and perhaps
more if I make a lot of progress. We'll see what God has in mind.
I also started a new chemotherapy
regime this past week here at Duke. My latest MRI of 6/18 showed what the doctor emphasized to me as very minor changes.
However he wanted to go ahead and switch me to what they originally wanted me to use back in January, Avastin
and CPT 11 (or Camptosar/irinotecan). They've also added Carboplatin. Because I was having so many problems with a bleeding
ulcer in January they used a lower dose of Avastin and a milder chemo drug. Now we're mounting forces against the tumor with
a stronger cocktail with which they've had considerable success. It's a little harder on the digestive tract and I do still
have struggles with the ulcer and reflux, but those are much better than they were and so far so good.
So
please do continue to keep me in your prayers. I'm quite sure every prayer makes a difference and helps sustain me whether
it be God's will that I continue to improve or make my exit from this world. As always I love and appreciate each of you.
I give thanks and pray for you daily.
Love and prayers,
Fr. Roger
-------------------------------------------
June 4, 2008
Dear Family and Friends,
It has been about three weeks since my
last post. I'm writing from the hospital this afternoon where I've just finished receiving my bi-weekly Avastin treatment.
I'm happy to share that I've had yet another stable MRI - no change in the residual tumor. My doctor has added an iron
infusion to my regime now too and it is having the desired effect of keeping my blood levels close to normal, if not normal.
So I am doing quite well.
In my last post I mentioned that I was planning to be at Duke in inpatient rehab
this week. I haven't made it there yet, but remain hopeful they will have room for me in another week or two. Actually
they're still trying to figure out if they think I will benefit enough from it that Medicare will agree to allow
an admission. Rehab with a brain tumor is somewhat challenging because functionality can be quite
fluid based on what's happening with the tumor, with steroids given for swelling and edema in the brain, and
fluctuations in strength caused by chemotherapy, etc. Medicare likes to see consistent gains, but unfortunately I can't
always demonstrate that. As I've shared before, when I started taking Avastin in February I had no movement in my left side
at all. I almost immediately started regaining movement with the treatments, but then I lost a lot of strength about a month
ago which the doctor attributes to decreasing steroids too quickly. So now we're titrating steroids down more slowly, I'm
exercising my legs and arm at least twice a day, and am doing all I can to get more use of my left side.
At this
point the plan is still to get me into rehab at Duke this month, but if not we will pursue some local options. I hope to take
from rehab a better picture / assessment of what I can and cannot regain in terms of walking and moving around.
We've been looking at wheelchair vans and may be purchasing one pretty soon. If the assessment is that I'm not going
to be able to walk again, I'm definitely interested in an electric wheelchair too so I can have as much independence
as possible.
I'm in very good spirits. May was a very good month with two stable MRIs and my birthday.
Many thanks for all the birthday cards and wishes. In case any of you are wondering, I was 36 1/2 for the second time on May
17. May also gave us another doctor in our household. Lisa very successfully defended her dissertation last week
and is now Dr. Lisa. Congratulations to her! We're all very proud.
Please continue to remember me in
your prayers. I attribute all the good things that have happened to me this year to the prayers of each one of you. I'm
so grateful to you for your love and concern.
Love and prayers,
Fr. Roger May 14, 2008
Dear Friends and Family,
This will be a short post but I wanted to share that I've
received word that my latest MRI was once again good news - STABLE! I am so grateful to God and for all the prayers each
of you continue to offer. I know your prayers are making a difference. I'm feeling very well and amazingly, have made
it through twelve months with this brain tumor. It was a year ago this coming Sunday, May 18, that I first heard
the diagnosis. There have been a few times when it didn't look like I would be alive today, but God has been generous
with me.
I have recently been wondering if I should write a letter of apology to the family and friends who
went out of their way to visit, fearing my days were numbered. Perhaps I could say something like, "Sorry,
but Prok the bloke, did not croak!" Irreverent remark aside, I am truly grateful. It's been an incredibly challenging
year, but in many ways a good one. I'm looking forward to what is next to come.
I'm still working my left
arm and leg, trying to get as much movement out of them as possible and I continue to go in the hospital every two weeks
overnight for Avastin. The first week of June we're going up to Duke where I am hoping to go into inpatient
rehab for a couple of weeks to get a fresh perspective on what we can do to strengthen my left side. If appropriate, I will
then try to do a more intensive outpatient rehab closer to home. l'll try to post again before we go. In the meantime, I
want to again express great gratitude and appreciation for your faithfulness in prayer for me.
Much love and
many prayers for each of you,
Fr. Roger
------------------------------------
April
14, 2008
Dear Family and Friends,
Life is filled with surprises - some pleasant some
not so pleasant. As most of you know, on May 18, 2007 I was surprised to receive a diagnosis of a very deadly brain tumor
with a prognosis of three months to a year to live. The past eleven months have been quite a roller coaster ride up and down
health wise. Now almost eleven months later, on April 11th I have just received another surprise - this one pleasant.
I have just returned from my clinic appointment at Duke University. I am thrilled to share with you that the Avastin treatment
I’ve been receiving has yielded virtually miraculous results. Miraculous because eight weeks ago the doctors were
telling me I was dying and had very little time left on this earth. Now, for the first time since I was diagnosed with a brain
tumor, my latest MRI shows that not only has the tumor not grown, it has shrunk significantly! Yes, thanks be to God,
this MRI report was truly positive. I also have far less edema and swelling in my brain. It is great to have the improvement
I’ve been experiencing day-to-day confirmed with the MRI films and report.
I must share
that both my local oncologist and my doctor at Duke have emphasized to me that there is no way of knowing how long this improvement
will last. This is still a day-to-day struggle. The use of Avastin for brain tumors is new enough that it’s hard to
predict. Still Duke has had a significant number of patients do well for at least a year, even longer. I know not how long
the Lord will leave me on this earth; I know only that my exit doesn’t appear to be as imminent as it did just last
month. I still seek His perfect will and pray that I may use each day to the fullest and for God’s glory. I am so grateful
for His mercy.
I have mentioned before that I am back in physical and occupational therapy,
trying to restore the use of my left side again. I am slowly regaining movement in my left arm. Progress with my leg is much
slower. My doctor today told me some of the weakness in my legs is likely due to the steroids I’ve had to take for the
swelling in my brain. We’re going to decrease those now and I’m hopeful I will then have more strength in my legs
and can begin to transfer more easily. I’m still hoping I can walk again someday, but for now I’ll be happy if
I can get better at transferring in and out of the wheelchair.
While the future is so unknown, for now I will continue
to take Avastin intravenously every two weeks. I will also continue on the mild chemo drug Etoposide, 21 days on, 7 days off.
As long as the tumor does not begin to grow again, and as long as I do not experience significant side effects from either
drug, I will continue them. I will keep having MRIs every 6-8 weeks to keep an eye on things.
I attribute
my improvement to the prayers of people like you who are reading this, and I ask that you please continue to remember me in
your prayers. Prayer releases the power of God in people’s lives, and I feel that I am a living witness to this article
of faith. Please continue to pray that God’s perfect will be done in my life and the lives of us all. I am more and
more aware that my illness is not something that simply impacts me and those immediately around me, but in many ways it is
an extension of my priestly ministry. As I ride the rails of this rollercoaster, I’m seeing God at work in many lives,
teaching us all many different things.
With great gratitude and affection,
Fr. Roger
----------------------------------
April 5, 2008
Dear Family and Friends,
What a wonderful Easter season! Things are going quite well here in South Carolina. I seem to be gaining a little
strength every day. I've begun occupational and physical therapy at home again and am slowly regaining some use of my left
arm and hand. Standing and transfers are a challenge, but getting better.
A "hiccup"
kept me from taking Avastin this week. It looked like the ulcer in my stomach was bleeding a bit and the doctors
felt it best to postpone the Avastin. The bleeding seems to have cleared though and I'm scheduled
to go to the hospital this coming Wednesday for my next round of Avastin. I'm told the delay won't impact the
efficacy of the treatment. Really, I do feel quite well. Several friends have told me I look better than I've looked
since this all began last May.
While I'm in the hospital I will have an MRI which will give us the real
story on what's happening with the tumor. Then the following week I will be traveling to Duke for a clinic appointment on
April 14. Of course we're all eager to hear the MRI results.
I'm happy to say I was able to make the trip
to Rock Hill Easter week to visit the Oratory. We rented a wheelchair van and while the trip was tiring, I tolerated the ride
(about 2 1/2 hours) quite well. It was wonderful to be with the Oratorians and to have a few minutes with some of the regulars
at the Oratory's noon mass.
I promise an update when we get back from Duke. I remain deeply appreciative and thankful
for each of your prayers and for all the encouraging emails and sincere notes and cards. Your prayers certainly sustain me.
Love and prayers,
Fr. Roger
-------------------------------------
March 20, 2008
Dear Family and Friends,
Well, we started trying to write an update two weeks ago and never finished
it. Let's try again. Today I am in the hospital receiving my third Avastin treatment. We started a month
ago at a time when things were looking quite bleak. January and February were very trying. A bleeding ulcer,
another bout of pneumonia, and growth of the brain tumor all took their toll. During January I lost all movement in my left
side; I lost my balance and could not sit up without support. I also developed significant vision problems, and was even having
problems swallowing. For the first time I began to have severe headaches. Still, for several weeks the doctors were unwilling
to start me on Avastin because of the high risk of hemorrhaging into the brain, lungs, or gastro intestinal tract. We kept
hoping the ulcer would heal but when it did not, and it was clear my condition was rapidly deteriorating, the risk/benefit
ratio shifted greatly. The doctors then offered hospice care or Avastin and prayerfully, I chose the Avastin. I'm also taking
Etoposide, a mild oral chemotherapy.
I receive the Avastin intravenously every two weeks. Because of
the potential complications, I am admitted to the hospital overnight. Thankfully there have been no problems and I have
been pleased to see real improvements. Within just days of my first treatment each of the problems I mentioned
above began to abate. Now I can sit up and eat again. I can move my left arm and hand again, and I can move my left leg
slightly. I am able to read well and have been trying to catch up on all the cards and notes you continue to so generously
send. I am planning to concelebrate the Easter Vigil Mass Saturday and I'm also hopeful I can make a short trip back
to the Oratory at Rock Hill soon.
This is a challenging time. While the odds are in my favor, the potential
for fatal side effects from the Avastin remain. I have gained a new understanding of "one day at a time," nonetheless
my spirits remain good and I remain grateful for each moment God gives. I'm eager to undergo my next MRI (scheduled
for the first week of April) and find out just how the tumor is responding to the Avastin. I'm also looking
forward to my next appointment at Duke mid-April.
I remain so very thankful for your prayers and the
love and support you continue to show with notes, cards, and emails. Your prayers certainly help sustain both me
and my caregivers. Later tonight or tomorrow I hope to post a special Easter message on my home page if we can get the
audio file to cooperate. If not, please know I love each of you dearly and wish you a blessed Easter with much joy.
With love and prayers,
Fr. Roger
-----------------------------------
February 2,
2008
Dear Family and Friends,
Just a short note this evening to give you this week's highlights.
It was good to be back home and to try to get back into what's become my normal routine. More easily said than done though. I seem
to feel a lot weaker after this last bout with pneumonia. Midweek I also experienced a lot of stomach pain
and nausea and ended up spending another night in the emergency room. Thankfully, while it was clear I was having
some more bleeding in my GI tract, it wasn't severe enough to warrant admission to the hospital, nor did I need any more blood.
I was thankful to be discharged back to home again.
I saw my oncologist Friday and we discussed the many
difficulties I've been having. He also was able to consult with my Duke team. With the GI bleed I'm unable to proceed
with any chemotherapy right now. The bottom line is a plan to have another MRI of my brain this coming Monday. Then on Tuesday
I will have an endoscopy to check the status of a couple of ulcers. Then on Wednesday we'll sit with the doctor again to hear
the results and see what options are viable.
Thank you for your continued prayers, notes, emails, and all the love
you send my way.
Fr. Roger
-----------------------------------
January 24, 2008
Hello Everyone,
Fr. Roger came home from the hospital early this afternoon. The pneumonia
has cleared and there's no evidence of bleeding in his gastrointestinal tract now. The plan at this point is to do another
endoscopy week after next to make sure the ulcers found at the base of his esophagus are completely healed; then he will most
likely start chemotherapy again. He's also going to continue OT and PT at home.
He's in very good spirits and send
his love and thanks for all your thoughts and prayers. We all have a lot on our plates the next month so we probably aren't
going to be able to answer many emails, but we'll do our best to get at least short updates here as often as possible.
Thanks for keeping the prayers coming!
----------------------------
January 20, 2008
Hello
Everyone,
Fr. Roger sends his love and greetings from the hospital this morning. He has had a pretty rough
week. Last week he made the decision to try another round of treatment using Avastin and "CPT11" (Camptosar
or Irinotecan). These drugs have been used to treat colon cancer for a few years, but have recently been used with brain tumors
with quite impressive levels of success. The drugs carry a risk of hemorrage or blood clotting though and because
Fr.'s already had problems with blood clots and is thus on a blood thinner, the risks are even higher for him. So
the doctors wanted him to take some time to consider this before making his decision and he did. In the end he decided to
try it and still is planning to do so, but as he likes to say, we've had a couple of new "hiccups."
On Monday he began to show signs of a gastrointestinal bleed. By Wednesday he needed some blood and a transfusion
went well. Thursday he had an endoscopy which showed a bleeding ucler that was healing. So we started some new medication
to help speed the healing along. But Thursday night he started coughing and by morning he had chills.
His temperature shot up very high and he was admitted to the hospital. A chest xray showed he has "a touch
of pneumonia" again, probably because he aspirated due to reflux from the ulcer.
The fever responded
quickly to antibiotics and he was joking and giving us all a hard time when he began to show signs of the gastrointestinal
bleed getting worse. He was given more blood, but had some problems this time. Still he managed another "Roger
Rally" late yesterday afternoon and rested well last night. He is going to have another endscopy this morning
to try to isolate and maybe even repair what is happening now.
As always he greatly appreciates your love and prayers,
particularly today. We'll keep you posted as much as possible. We're hopeful this week's challenges can be resolved soon.
Love,
Fr. Roger and his South Carolina Cohort
-----------------------------------
MERRY CHRISTMAS & A VERY HAPPY NEW YEAR!
January 8, 2008
Dear Family and Friends,
Thank you for visiting my website. I'm a bit late adding my Christmas greetings
here, but please know all of you have been in my thoughts and prayers throughout Advent and the Christmas Season. I have
so appreciated the many, many cards and gifts I have received. Many thanks for remembering me. I pray each of you has
had a wonderful Christmas and that your New Year is off to a good start.
We had a great Christmas
here. On Christmas Eve, Lewie and Lisa (the couple I live with) and I had a lovely dinner at a very nice restaurant
and then attended the Christmas Eve service together. The next morning I concelebrated the Christmas mass at
St. Paul's, one of the parishes I was serving here in South Carolina when I became ill. It meant so much to be vested
and concelebrating. After church we returned home to open presents, take a nap, and have a wonderful Christmas dinner. Lisa
took several pictures which are now uploaded to the pics link and of course there's the one of me as Fr. Elf
above. We hope you enjoy seeing them.
Our joyful Christmas has been a bit hectic. Lisa and
I made a trek to Duke the week before Christmas. There was no break in my daily rehab activities and I've had some
medical appointments here at home. Additionally, Lewie had to have emergency surgery to remove his gall bladder on
New Year's Eve, but he's now home recuperating nicely. Still Lisa has had her hands more than a little full trying
to care for not just one, but two demanding males. We are grateful for her love and devotion to both of us.
My health news is not the greatest at this time. I had an MRI this past week that is showing some slight growth in
the tumor on my brain. The chemotherapy drugs that had been working are no longer doing so and so they have been stopped.
I'm having a little more trouble with my left leg and seizures, but my left arm and hand continue to strengthen. This week
I need to make some decisions about further treatment and I ask that you please pray that I might discern God's will and know
with confidence the right path to pursue. I will do my best to write another update soon.
With love and prayers,
Fr. Roger
-----------------------------------
December 2, 2007
Hello
Everyone,
This is Lisa posting a note for Fr. Roger this Sunday morning. He intended to write a
long post yesterday but a "hiccup" prevented us from doing so.
First he wants you all to know we
received good news during our Duke trip Thanksgiving week. There was "NO new discernable tumor growth."
The doctors are "guardedly optimistic" that the experimental chemo drugs he's now using are helping him. We will
know more from his next MRI which is scheduled for December 13. We go back to Duke December 17 and we are quite hopeful
that they will be able to tell us the residual tumor is shrinking.
He continues to grow in strength and has been
free of pain in his left extremities for over a month. He's still getting OT or PT every day Monday through Friday. While
he has a ways to go, he has more use of his left arm and hand than he's had since surgery in May. His left leg is
not cooperating as much, but he is moving it a bit more. Right now he's working on his balance and on standing with a walker that
has a special platform for his left arm.
Yesterday's "hiccup", as he's calling it, is that he started
having some chills Friday night and by morning yesterday he had a pretty high fever. So it was off to the emergency room to
find what was behind it. Turns out he has developed a "touch of pneumonia" and so he was admitted for IV antibiotics.
We don't expect him to be in the hospital long. His fever broke by mid-afternoon yesterday and he is already feeling a lot
better. This morning the doctor told him he may be discharged as early as tomorrow.
As always he sends his
love and gratitude for all your thoughts and prayers.
-------------------------------
November
11, 2007
Dear Friends and Family,
Just a quick note to say this has been a good week.
The weather has been beautiful, I have felt strong, have had no significant problems with the chemo drugs or seizures, and
I'm making some progress in having greater range of motion in my left arm and hand. This coming Friday I will be having
an MRI early in the morning. Sunday I will fly to Duke again for a two day appointment when I'll hear the results
and make decisions about continued chemotherapy. As always, thank you for your love, prayers, cards, and all the concern
each and everyone of you express for me. I am so grateful. Will provide a longer post after we return from Duke.
With love and prayers,
Fr. Roger
----------------------------
November 6, 2007
Dear Friends and Family,
Some of you are emailing and asking for my next post, worried
that my silence means things haven’t been going well. To be honest, things haven’t been the greatest, but let
me try to give you a few encouraging words this morning via my ghostwriter. OK, Lisa does write some of
these for me, but I always fine tune, dictate a little more, and approve before they are posted.
The going has been a bit rough this month but, thankfully, I seem much better the past few days.
As I mentioned in my last post, my October MRI showed some new growth of the residual tumor. My blood counts were also down
and I ended up needing a blood transfusion. My Duke team then asked me to come back to Durham early (Oct. 22 & 23) to
go over a new regime of chemo drugs which hopefully will work better than the Temodar. Thanks to the Edwards, I flew up to
Duke again, in their private jet, along with Fr. David and Lisa. I had a PET scan that helped clarify whether the images seen
on the MRI were really cancer cells or inflammation from radiation and chemo. The PET scan confirmed that the tumor has grown
a little, down into the motor center part of my brain. That explains why I had increasing weakness in mid to late October,
as well as increased swelling and pain in my left extremities.
While
at Duke I did decide to join an experimental study that includes three chemo drugs (Gleevec, Rad, and Hydroxyurea) and I started
taking these on Tuesday, Oct. 23. The same day I also started another drug they hoped would help eliminate breakthrough seizures
and especially ease the pain I was experiencing. But this drug caused me some problems. I truly became
so exhausted from all the tests, travel and new drugs, that by mid-day I could hardly sit up. I started
to experience some confusion and I began to have pain and twitching in my right side. I was at the clinic
when all this happened and the doctor stopped the blood draws they were doing for research, put me back on Decadron to reduce
swelling in my brain, and gave me Ativan to stop the seizure activity. Then they sent me back to the hotel with instructions
to go to bed and rest. I’m afraid Fr. David and Lisa had a rather worrisome time for the next three days wondering
whether they could manage me in the hotel or if they would have to take me back to the Duke campus to be admitted to the hospital.
I had a lot of seizure activity and pain despite all the meds. I don’t believe a word of it, but according to Fr. David
and Lisa, I was pretty “loopy” and had a few interesting conversations with them! Reportedly I was very insistent
I be served cakes from Lisa’s grandma’s kitchen and one morning I was certain I needed my car keys so I could get
to work. Thankfully my Duke doctors were very supportive and stayed in close communication with us. I was able to get
some much needed rest and I did not have to be admitted to the hospital.
We ended
up staying in Durham all week, mostly because of my condition, but also because of inclement weather. The small jet we
traveled in wasn’t able to return until Saturday because of thunderstorms and tornados that stayed over our part
of the country the last half of the week. We were all glad to finally get back home on Saturday, Oct. 27, but I
remained really exhausted. The next day (Sunday) I had a pretty bad seizure and to be honest, most of the day I couldn’t
even sit up on the side of the bed without support. In the evening though, I did manage to get into my wheelchair
and I was able to celebrate mass at home. We cried our way through that mass, so unsure of what was happening and what was
to come. God’s consolation did help me rest that night.
Well,
that’s the bad news. The good news is that things seem to be turning around. When I awoke last Monday
(Oct. 29) I felt a little better and stronger. Each day since I've seen some improvement. The twitching in my right
side has stopped. I had only one seizure last week and then another very short one (less than three minutes) this past
weekend. The swelling in my left arm and hand has vanished. I have only minimal pain in my left hand now and I have more movement
in that arm than I’ve had since June. I have some movement in my left leg again and the past couple of days I’ve
actually been able to pull myself to a standing position (without help!) when I’m sitting on the side of the bed. I
truly feel good, though I do tire very easily. My blood counts were decent this week too.
It almost seems too good to be true and I’m not quite sure what to make of it. As one friend has suggested, perhaps
my improvement can be attributed to God being tired of hearing my name mentioned so often, or perhaps the Decadron is
helping immensely by reducing the swelling in my brain, or maybe the new chemo drugs are working, or some combination of all
of the above. I’m simply very grateful and thankful. I do know my Duke doctors kept saying they were hopeful that if
I could just hang in there a few more days I’d see improvement this week from both the Decadron and the chemotherapy.
They told us they have had success with the particular “cocktail” of chemo drugs I’m taking; the tumors
of several patients have stopped growing and some have even shrunk. The proof for me of course will be my next MRI which is
scheduled for Nov. 16. I then go back to Duke Nov. 19 & 20.
Per the doctors’ advice, I’ve been discharged from outpatient rehab and have gone back to having home health
services. So physical and occupational therapy come to me again. This seems to be the best arrangement because I fatigue so
quickly on the new chemo drugs and fatigue seems to be such a factor in causing seizures. So I’m still working on becoming
more independent mobility wise. I take the chemo drugs orally every day and thankfully, except for tiring easily and some
indigestion, I’ve had little side effects. The drugs do make a little more structure necessary in terms of
scheduling when I must eat, when I can and can’t have certain foods, when I can lie down or have to sit up, etc. But
these are minor inconveniences.
Many of you continue to ask what my prayer
needs are and I would say this. First please continue to pray for God’s perfect will for me whether it be that my life
ends soon, or I have more years to serve Him and His people. Please also pray that I continue to have courage and strength,
physically, emotionally, and spiritually, to manage the chemotherapy and long rehab activities. Please
keep Lisa and Lewie in your prayers and give thanks for their goodness, sharing their home and all the care they provide.
Pray also for my medical team that God will not only guide them, but draw them to Him. Thank you so much for your faithfulness
in prayers, notes, and love.
With love and prayers,
Fr. Roger
---------------------------------
October 20, 2007
Dear Family and Friends,
A great deal has been happening this
month and this evening is one of my first opportunities to spend a few moments writing an update.
I have
continued to go to rehab three days a week and have made a little progress, though certainly not as much as I would have liked. I
have been having some problems with focal motor seizures and while I seem to take three steps forward with rehab, each seizure
seems to send me one or two steps back. The seizures cause much pain in my left arm, hand, and leg.
Last week's MRI revealed some growth in the residual tumor and it looks like I will begin a new regimen of chemotherapy. I
will be traveling to Duke again this coming week (Monday thru Wednesday) for some more tests and probably to begin an experimental
cocktail of three chemotherapy drugs. Thankfully, once again I'll be flying on a private jet, and Fr. David and
Lisa are able to accompany me. Please pray for the success this Duke venture.
October 6th was especially a joyful
day for me because I concelebrated mass, and greeted individual parishoners afterwards, at St. Paul's in Seneca. The other
priests of the parish also concelebrated. Although I had to use a wheelchair, it was so good to be back at the Altar.
Please continue to keep me in your prayers. Despite the seriousness of my diagnosis, I generally remain on an
even keel and am trusting God's perfect will for my life.
With love and prayers,
Fr. Roger
-------------------------------------------
September 28, 2007
Dear Family and Friends,
It's hard to believe it has been
two weeks since my last update to you. The time has been filled with outpatient rehab and more chemotherapy. I'm
happy to report I've had no major side effects from the increased dose of Temodar and I suspect I have your prayers to
thank for that. I could complain about aches and pains from the rehab exercises, but as it is said, "No pain, no gain."
I am better able to stand and am taking a few steps with a new brace that helps my left leg and foot behave as they should. (For
those who are orthopedic savvy, the brace is called an AFO, but I like to call it my UFO.) I am still hopeful I
will be able to retire my wheelchair sooner than later.
Last week I had visits from my sister and brother and their
spouses. It was good to get together with them once again. Next Saturday, October 6th, I'm hoping to visit
the parish at which I was working in Seneca before I became ill and perhaps even to concelebrate the vigil mass. Being
able to celebrate mass is of course such a great joy to me.
I hope this posts finds all of you well and happy. I
am, as always, so grateful for your prayers, concern, and love.
Faithfully yours,
Fr. Roger
P.S. I
do have one special prayer request. The next couple of weeks is when the Temodar is supposed to be hardest on my blood
count. Yesterday I needed another procrit shot, for the third week in a row, to strengthen my bone marrow's ability to
produce blood products. Thanks for remembering this in your prayers.
------------------------------------------
September 16, 2007
Dear Family and Friends,
I made my trip to Duke this week. The original plan had been to go by car,
but some parishioners at St. Andrew’s in Clemson, who own a private jet, volunteered to fly me. What a gift! Fr. David
Hudgins and Lisa (Baker) Reece joined me.
At Duke I was very much impressed with the professionals who talked with us. My most recent
MRI however, proved to be inconclusive. It showed some real progress in reduction of the residual tumor, but also indicated
there might be a new area of growth. On the other hand, what is being seen might just be irritation from the treatment I’ve
already had. Apparently up to 50% of MRIs taken after the conclusion of chemotherapy and radiation show this ambiguity. I
will have another MRI in one month and will return to Duke in two months with yet a second MRI at which time this should all
be clearer. In the meanwhile, according to the Duke regimen I will begin additional chemotherapy, but no more radiation. I
am also scheduled to begin outpatient physical and occupational therapy at a rehab hospital this week.
Thank you for all your
prayers and kind notes and emails this week. I know they made a difference. Please continue to pray - for the success of this
next round of chemotherapy and for success with my rehab activities. Please pray for continued progress
in using my left arm and leg. I so desire to walk again.
Love and prayers,
Fr. Roger
---------------------------------------------
September 3, 2007
Happy Labor Day to my family and friends!
I'm very pleased
to be dictating today's post. It has been a wonderful week without radiation and chemotherapy. I've spent my time working
hard on rehab activities. I'm very happy with my home health services through which I continue to receive physical and
occupational therapy every day. In fact, they've stepped up the OT to daily now, and PT 3xs per week, because they
think my progress is impressive. Of course to me it seems like a snail's pace, but I am gaining strength in my left side
which was affected by the brain tumor and surgery.
I ask you especially to pray for me from September 10
- 12 when I have another MRI and consultation with Duke's brain tumor center staff. I am rather anxious about what the outcome
of their review of my records and treatment will be. My oncologist here seems to think they will recommend that I participate
in one of their clinical trials, but I imagine that will depend on what my latest MRI will indicate is happening with the
residual tumor. The drive to Duke is about 5 hours; please pray for me to have the stamina to make the trip without too much
difficulty.
Depending on the outcome with Duke, I expect to return to the home of my friends in Anderson,
and begin outpatient rehab at the facility where I was before. Hopefully this will pick up the pace on my gaining better
use of my left side.
I remain grateful to my friends who are providing a loving home environment for this difficult
time. I also remain grateful for the kind wishes you send me over the internet and through cards and notes. I am so strengthened
by your prayers.
With love and my prayers,
Fr. Roger
-----------------------------------------
August 25, 2007
Dear Family and Friends,
We have been so busy with treatment and
rehab that we've struggled to post updates this month. Nonetheless Fr. Roger is eager to let each of you know that
he is doing quite well!
Monday (Aug. 27) will be his last day of treatment with Temodar and radiation.
It's almost hard to believe we have made it through all these weeks of daily treatment. Thankfully the past six weeks have
been fairly smooth with minimal side effects and problems. Mentally he is very alert and he is, for the most part,
his brilliant self again. He continues to grow stronger daily. He's lost a little hair at the entry points of radiation,
but he still has most of his white crown. He's been very tired and needed a great deal of rest, but no nausea or
discomfort from the chemo drug. His platelets have dropped only minimally. He's had NO seizures. We've been able
to discontinue the steroids he was on, as well as all the anti-seizure meds but one.
His appetite is great
now and his spirits are good. His vision has improved greatly and he's able to read again. He's back to his daily
discipline of prayer using his breviary and is also enjoying reading just for pleasure. It meant a great deal to him to celebrate
mass again last Sunday, the first time since June.
All this improvement is truly a wonderful gift from the Lord
as seven weeks ago he was totally bedbound, had no movement in his left side, was having considerable difficulty with
his vision, and was experiencing a great deal of confusion most of the time (primarily because of all the medications
needed to stop the seizure activity he was then experiencing). We are so grateful and we thank each of you for your prayers
and love as they surely have made a difference!
Next we have a two week hiatus to focus just on rehab. He's
still working very hard to strengthen his left side. He now only needs one person to transfer to a wheelchair, he
can propel himself a short distance, and he can stand with a walker and even take a step or two. We're looking for increased
strength and stamina without daily radiation and chemotherapy, and we are very hopeful that the next two weeks will bring
a big increase in mobility.
On Sept. 10 he will have another MRI to see what's happening with the
residual tumor. Then we head to Duke for a two day consultation regarding any further treatment.
Fr. Roger should have some time to dictate a post again later this week. In the meantime we hope you enjoy the pictures
we've uploaded. You'll notice a new family member. As if treatment and rehab wasn't enough, we rather spontaneously adopted
a new kitty last weekend. Fr. R. had dropped a hint or two about our home needing a second cat. Eight-week old Winston
Prokop is now keeping all of us quite busy. He torments his big sister Sarah who is a fairly reserved,
quiet cat. Winston, on the other hand, is quite a lover and is always looking for lots of cuddles and
a lap, a neck, or even a head upon which to settle for a nap. Enjoy the pics and check back for another update soon!
---------------------------------------------
July 31, 2007
A post dictated by Fr.
Roger
Dear Family and Friends,
I'm happy to once again be able to dictate a post. First and foremost
I want to again say thank you for all the wonderful love and support each of you have demonstrated with prayers, cards, emails,
flowers, and notes. While I'm not able to respond to each individually, they do still mean a great deal.
I
know many of you are curious about my current living arrangements. Since I was last discharged from the hospital
I am staying with a friend I met nearly 30 years ago while I was a doctoral student at the Univ of Michigan. Over the
years our paths crossed occasionally, but this past winter we discovered we were both in South Carolina and rekindled our
friendship.
When I became ill with this tumor, my friend was willing to put her social work
skills to use to help me navigate the medical world. Her generous heart has helped me deal with all that this illness
has presented. She and her very kind husband have both been of great assistance. From the beginning they
offered their home for my convalescence, and after my last difficulties with seizures, when my living options here
were extremely limited, I agreed to accept their gracious offer rather than accept a nursing home bed about an hour
away. My friends' home is within a mile of all my doctors, hospital, and cancer treatment center and this
does make life a little easier. Sharing their home in many ways has seemed an extraordinary sacrifice on their part,
but they've convinced me they don't view it as such. Rather they see it as a simple act of brothers and sisters caring
for one another, a Christian act that really should be quite natural. I am very comfortable here now and I'm
certain many of the gains I'm making are due to the good care I am receiving and the faith and prayer we have in
common.
The future of course remains uncertain, but I am pleased with the progress I seem to
be making now. I'm looking forward to going to Duke in another three weeks or so. Please do continue
to keep me in your prayers. As most of you are probably aware, the daily chemo and radiation is so very exhausting and
truly almost all my energy is expended with treatment and therapies. Nonetheless, I will dictate another post again as soon
as possible.
With love and prayers,
Fr. Roger
--------------------------------------------
July 30, 2007
Dear Family and Friends,
This evening Fr. Roger started dictating a post,
but soon fell asleep. He's eager to post some good news here so I will share a few things tonight until he
can finish his dictation in the next day or two.
First of all, he is in very good spirits. He has
seen considerable progress on several fronts the past few days and that of course is encouraging. He's been out
of the hospital and at our home for 10 days now. We've settled into a rhythm of prayer, meals, care, cancer treatment, physical
therapy, and occupational therapy. His left side is "waking up" and he has more movement in both his left
arm and leg than we've seen since before surgery. He's starting to use his left arm to help pull himself onto his right
side. Today he used his left leg to help push up his lower back and pelvis, an exercise to strengthen his back muscles. The
past 3-4 days he's been sitting on the edge of the bed, with some support, to eat his meals.
Today the physical
therapist had him trying to stand again and told us go ahead and get his wheelchair delivered tomorrow so he can
start getting back into it. We ordered a chair that has special support for his back almost a month ago, but it didn't
come in before his setback with seizures. After the setback, we were instructed to wait a little while before taking
delivery so we could see if the particular model would still work or if he'd need another. We're all looking forward
to getting him out of bed and into a wheelchair again for at least part of the time each day.
Mentally he
is also much clearer. We've been able to discontinue two of four anti-seizure medications so he is not nearly as drowsy
as he was, nor is he having as many periods of confusion as he had. He still gets drowsy after he takes his morning meds
and chemo drug. He also is very tired and usually naps for an hour or two after radiation treatment which he still receives
every afternoon, M-F. Periods of confusion now seem to be tied to either radiation or to his night dose of phenobarb.
Sometimes he's a little confused for an hour or two after radiation. As for the phenobarb, we expect to be able to start discontinuing
it shortly.
Tomorrow will mark a milestone in treatment in that he will be half way through his
radiation and initial chemotherapy. He's had NO problems with nausea, vomiting, or hair loss. Really the main "side
effects" have been tiredness and sometimes confusion. He will finish radiation and chemo on Aug. 21 and will then go
to Duke for a consultation on participating in one of their clinical trials that has shown a lot of promise.
His
vision is improving though he has some trouble tracking across the page. But he's using his Breviary again for prayer
and that means a great deal to him. He's also starting to enjoy having some fiction read to him when he can stay awake
long enough to follow the story.
It's so wonderful to see him showing considerable improvement and be more like
himself. His appetite isn't the greatest, but he's eating pretty well at most of his meals. He's sleeping much better
now too. It's of course a very challenging time for all of us, but we're doing well with wonderful times of prayer and
reflection and equally hilarious moments, often around things unexpected. We're all very grateful!
Thanks
to each of you for all your support!
------------------------------------------
July 20
- A post from Fr. David Hudgins
A note for Fr. Roger's family and friends in Michigan, New York, Florida,
West Virginia, and elsewhere.
I’d like to offer few thoughts on my visit with Fr. Roger this week. (Fr. Roger allowed me
to visit him as a brother priest from the Diocese of Lansing, as a friend, since we had arranged this visit nearly a year
ago, and I suppose because I have lived with him in the past, and for a short time he came to live with me.) I just want to
share a bit with those who love and pray for him from far away in order to dispel a few worries folks might have. (At least
in part these have been my worries.)
1) Fr. Roger is receiving excellent care.
For those of us who know and love Fr. Roger there is a natural concern for his well-being. And so we have questions
like, "Do the South Carolinians know who they've got? Is he getting enough support? Wouldn't he be better-off in Michigan
where so many of his friends are?"
I'd like to assure everyone that he has the best of
care. On Wednesday 7/18 he transitioned out of the hospital and is staying in the home of an old-time Michigan friend providentially
now in South Carolina. (This friendship dates from the 1970s when Fr. Roger was working on his Ph.D. at U of M and was living
in the Rectory of St. Thomas the Apostle during the blessed pastorate of Msgr. Robert Lunsford. Many of Fr. Roger's friends
remember those days.)
This beautiful home environment where he is living is peaceful, relaxed, warm,
and pleasant. He is blessed with a small army of caregivers offering 24 hour a day support. His help is 1) professional: nurses,
physical and occupational therapists, 2) pastoral: friends from his priest support group down here, priests and pastoral staff
from his SC parish of Sts. Andrew, Francis, and Paul (actually three churches in Clemson, Seneca, and Walhalla, SC),
and of course his confreres from the Oratory in Rock Hill and 3) personal: his friends, those who love him dearly (of course
that could be said for all of us), care for him.
Those of us out of state who have known Fr. Roger so
well may not fully appreciate his "family" in South Carolina. Of course his relationship with the Oratory of St.
Philip Neri in Rock Hill spans decades. Over the past two years he has grown close to many priests in the Diocese of Charleston.
And of course the people he has served in the parish of Sts. Andrew, Francis and Paul have fallen deeply in love with our
Fr. Roger. None of this is surprising. We all know how easily this devoted servant of Jesus captures a special place in our
hearts. Mostly because he loves us so well.
So Fr. Roger is surrounded with the loving support
and superlative care offered by many friends, both new and old. We can have some peace in this knowledge.
2)
Fr. Roger is not in pain and is full of peace. He is tired (as I will explain below) but he doesn't hurt physically. As with
all of life he has moments of frustration, but his general disposition is one with which we are all familiar: trusting serenity,
patience, kindness, considered intelligence, and good humor.
3) Fr. Roger has mental clarity and his sense of humor
is endearing as always. As you can imagine he charms all his doctors and nurses. Everyone who works with him remembers and
is graced by the encounter. So his priestly ministry continues to make present the love of Jesus albeit in a different form.
He continues to offer his gifts as a "brilliant conversationalist" with all the wit, wisdom, and "Fr. Roger-isms"
which we all know and love.
4) At this time nearly all his energy is given over to his medical
treatment. As anyone who is familiar with cancer treatment knows: chemo and radiation are exhausting. This fatigue is compounded
by several medications which though needed at this time, have a tranquilizing effect.
So
Fr. Roger is giving his whole self to his medical care and this is a full-time job. Therefore for those
of us who would give anything to see him and visit a bit, be consoled that for the time being it's just not possible. He doesn't
have the energy. And none of us would want to add to his fatigue. We know he needs to rest and so we will let him.
5)
Fr. Roger deeply appreciates all the prayers, kindnesses, and expressions of affection that have come from all of you here
on www.frprokop.com and in the mail. When he is willing, and after prayers are said, these messages of love, and encouragement,
these assurances of prayer are read to him. He is deeply thankful and sincerely appreciates and experiences all this support.
Fr. Roger asked me to share these thoughts with you in the hope that you might have
a greater knowledge of his life at this time, and comfort in the fact that God is taking care of him through the hands of
many "angelic" people. He also asks for your continued prayers: prayers for patience, peace,
courage, serenity, and that he might always accept and do God's will, whatever it may be.
~Fr.
David Hudgins
-----------------------------------
July 13, 2007
Hello Everyone,
Fr. Roger has had two days of chemo and radiation now with no difficulties - no
nausea - no seizures. He's still pretty groggy from the anti-seizure medications, but the doctors are hopeful
they can decrease them some, perhaps even this weekend. He's a little frustrated with being so groggy, but in good spirits
overall. We're so thankful.
As long as no problems surface, he'll continue on the Temodar for another
45 days and have a radiation treatment every day Monday through Friday for a total of six weeks.
He sends his love
and prayers.
------------------------------------------------
July 10,
2007
Dear
Family and Friends,
After three and a half days, the seizures Fr. Roger
has been experiencing have stopped. They seem to be controlled now with a mixture of anti-seizure
medications. An electroencephalogram done yesterday around noon was much better than the one done last Friday,
showing much less seizure activity, and this morning the neurologist couldn't see any evidence of any seizures.
Thankfully, an MRI that was done yesterday indicates no significant new tumor growth
in his brain. There is some residual tumor, but nothing quickly replicating. The neurologist
and his neurosurgeon say they think the seizures, which are called focal motor seizures, are due to the after effects of his surgery
last month and/or possibly the radiation treatment he received last Friday. The brain is "irritated." They
also said this type of seizure is common, though apparently it is unusual for such seizures to last continuously
for such a long period of time.
His doctors also told us that even if the radiation caused the seizures, he should continue the radiation treatment.
The right mixture of anti-seizure medications should allow it. They still feel aggressive treatment
is warranted and appropriate. The neurosurgeon also told us he still thinks Fr. Roger can regain better
use of his left side, and that is a real relief to him.
So, Fr. Roger will probably
start chemo and radiation again Thursday. However, the oncologist will leave him in the hospital at least
through the end of the week and get at least a couple of radiation treatments under his belt to see how he responds and whether
any further problems develop.
He is quite groggy from all the anti-seizure meds so he is sleeping a lot, but when he is awake, he's still his brilliant
self, just moving a little slow. He sends his love and prayers and as always is so grateful for your love,
prayers, and many kind words in emails, posts, and cards.
----------------------------------------------------------------------------------------
July 7, 2007
Dear family and friends of Fr.
Roger,
Fr. Roger asked me to post short note for him today. After a really good week, yesterday he had a
bit of a set back. Earlier in the week he did move to an assisted living facility, is very pleased with his new living
space, and was planning to write a description for you for this post. Also, along with a couple of brothers from the
Oratory, he visited the home of a friend here for the 4th of July and had quite an enjoyable day out, ate better
than he'd been eating since surgery, and did well with transferring from wheelchair to car, etc. He did also have
his first chemo and radiation treatment yesterday and at first did quite well. But just a few moments after he finished
his radiation treatment, he began to have a seizure that led to him having to return to the hospital. He's getting really
good care and is fully aware of what's going on around him, though the seizure problem is not yet resolved. He'll likely
be in the hospital at least a few days. The good news is that tests have shown that the seizures are NOT due to
any of the things that could have put him in imminent danger. His oncologist offered a lot of encouragement
that this problem is something that can be controlled; also, he believes he can keep Fr. Roger on track with the
chemo and radiation.
Father Roger of course again expresses his deep gratitude for all your love and prayers.
He still asks that you not visit or call right now. But please be assured he is being well taken care of here
and will reach out to more of you as soon as he is able.
------------------------------------------------------------
June 29, 2007
Beloved friends and family,
I’m still writing to you from rehab. I’m continuing to gain strength in my left arm and leg,
but I still have quite a bit of work to do before I can do everything for myself. During therapy time I’m
walking very short distances with a walker, and now I can transfer with the assistance of just one person. However,
I still tire easily and someone is always telling me to sit up straight! I’m sleeping pretty
well and I’m beginning to have a little bit of an appetite again if my choice is a home cooked meal from one of my friends,
which it is more often than not.
Yesterday
was a long day of appointments with my chemo oncologist and my radiation oncologist. I think I understand
where we’re headed now and while it is a bit frightening, with God’s grace I think I’m up to the task. I
will be following a course recommended by Duke as well as my current doctors.
Yesterday I was
fitted with a special mask for my face that will be used to hold my head still for radiation treatments. Over
the next few days I’ll see the radiation oncologist again a couple of times, once to mark the mask with all the
places where radiation is needed, and then to have a short session in the radiation machine. This “dry
run” is to make sure everything has been “mapped” correctly for zapping my brain. Then
next Friday, July 6, I will begin both the chemo and radiation. The chemo is a capsule, Temodar, which I
will take for six weeks every day. The radiation involves about ten minutes of treatment daily, Monday through
Friday. The low dosage of Temodar used at this stage of treatment will help the radiation be more effective.
If you're interested, there is a website with more information about Temodar than one can possibly digest in one setting,
but still very helpful: www.temodar.com.
After six weeks of chemo and radiation, I will have three weeks off, at which
time I am to have an MRI and cat scan, and report to Duke to see how best to proceed. At that point,
the standard treatment is to begin a cycle of taking a high dose of Temador for 5 days, with 23 days off. This
would continue for about another 20 weeks. However, the doctors at Duke may suggest an alternate schedule
or even other options.
Of course I have some anxiety about side effects, but both doctors actually
de-emphasized them yesterday. The radiation oncologist told me to expect only hair loss and pink skin, looking
a bit like a sun burn. She also said I might feel more fatigue in the evenings and want to sleep a bit more
than usual, but she expected no major side effects from the radiation. On the other hand, the chemo side
effects are likely to be more troublesome. Still, the percentage of Temodar patients who experience hair loss, nausea
and vomiting, and a few others things, is apparently much smaller than with other types of chemo. Also, since
the dosage of Temodar is a “low radio-sensitizing dose” for the first six weeks, indeed I may not have as much
difficulty with side effects as I’ve feared.
My next bit of news is that I will be moving to an assisted
living facility on Tuesday. It turns out that Medicare rules do not allow billing for an acute rehab bed and
radiation treatment at the same time. Another way to explain this is that when billing for a rehab bed, the rehab
hospital receives one lump sum out of which the hospital has to pay for all treatment for me; adding radiation to the other
therapies makes them lose money. So, it's out I go. I'll have a private room at the assisted living facility and
assistants to help me with care as needed. I will also be able to continue physical and occupational therapies. The
facility is located close to the cancer treatment center so travel for radiation treatments will be manageable.
This
weekend one of my friends and two of my Oratory brothers will help outfit my soon-to-be abode with
a few things from home, a hospital bed, a lift recliner, and all the various and sundry equipment the doctors and therapists
seem to think I need. I am especially grateful for these living arrangements as I believe it best to continue treatment
as outlined above. I haven't seen the facility yet myself, but two friends here did and I trust their judgment.
They assure me it is quite nice and is a place where they believe I will be comfortable and receive very good care.
This weekend I hope to celebrate
mass again on Sunday. This brings me great joy. For the Fourth of July, one of my friends here has invited two
or three of my dear brothers from the Oratory for a barbecue. If I have any energy at all I may try to join them
for an hour or two, but I suspect I'll just have them bring the ribs and chicken to me!
With all that is happening, it is still best that I forego visits and calls
and focus on rehab and treatment. Nonetheless I want to again express a huge thanks to each of you for the many thoughtful
and loving cards, notes, emails, and posts. They mean so much to me. One of the staff members of St.
Andrew's began what's become habit for me now. Each day one of them brings me communion and then we open and read the cards
as a celebration of each sender's love and care. I am truly encouraged by this. And of course I owe
a debt of gratitude for your constant prayers.
With
much love and prayers,
Fr. R.
-----------------------------------------------------
June 23, 2007
Greetings from rehab. This week
has been a very busy week in which my occupational and physical therapies fill up almost the entire day. In
the mornings I mostly work on strengthening exercises, walking, etc. In the afternoon they usually have me work
on "ADLs" or activities of daily living, i.e., all those mundane things one has to do like bathe,
eat, and get around in general.
While I'm still stuck in a wheel chair due to the weakness in my left side, my
goal is to leave the rehab hospital ambulating with a walker and taking care of all my "ADLs" with minimal assistance.
My rehab doctor thinks this is a realistic goal and we're all working very hard to reach it. The work is very tiring,
but well worth the effort.
One thing you might find interesting is my use of a new high tech machine. It
is designed to help people walk again. Essentially, the staff hook me to the machine with a harness and other
attachments, and then the machine makes my legs walk with a normal gait. This is supposed to "print" how to
walk on my brain so I can get my left leg moving as it should.
Rehab is tiring, the food is awful, and the snoring
of my roommate makes life interesting, but I'm getting some respite with hot homemade meals and sandwiches a friend brings.
And I find many opportunities to minister to both patients and staff here.
A great joy to me was being able to
celebrate mass last Sunday (with a congregation of three) and I am planning to do so again tomorrow. I remain so thankful
to the Lord and to my friends and family for all the love and support that is sustaining me.
Yesterday I had
an appointment with an oncologist here who encouraged me to continue pursuing treatment at Duke. He told me the
Duke doctor, who has been looking at my tissue samples, scans, etc., is the best in the nation and, while other places offer
better treatment for other types of cancer, Duke is considered best for brain cancer treatment. I've since had further
contact with Duke and their initial recommendation is that I begin radiation and chemotherapy locally while I complete rehab
and then contact Duke for further treatment. I'm in the process of putting all this together and will post another update
when I have clarified the details.
As you can see my days are very full with rehab and treatment so I'm still unable
to have visitors and calls. Nonetheless, your cards, emails, and posts mean so much. Thank you again for your
incredible support, love, and prayers.
With love,
Fr. Roger
------------------------------------
June 16, 2007
By now most of you are aware that toward the end of May I was diagnosed
with a brain tumor. I had been having some problems with mobility for a few weeks, especially on my left side.
My regular physician had suggested it was primarily due to a reaction to medication, but at the urging of friends, I saw an
internist who very quickly discovered the problem. I spent about a week undergoing tests to determine if there are cancerous
cells anywhere else in my body; fortunately there are not. The brain tumor appears to be the primary site.
The name of the type of tumor is glioblastoma multiforme.
On the Friday before Memorial Day, the tumor was
removed. A few days later I was moved to a rehabilitation facility. Last week, however, I developed
blood clots and was having considerable difficulty breathing. So I was moved back to the main hospital to treat that
problem. Yesterday I returned to the rehab hospital and am getting back into a rather strenuous schedule of physical
therapy each morning and afternoon.
The therapy I am receiving is to help me regain use of my left side.
I have considerable weakness in both my left arm and leg. I am seeing progress with this, gaining more detexerity
in my hand, and better control of movement in my leg.
The form of cancer I have is quite aggressive. Life
expectancy varies widely from a very short time to several years. Currently all my records and tissue samples have been
sent to Duke University for evaluation to determine if I may benefit from treatment coordinated through their brain tumor
center / program.
The priests and staff from the parish of Saints Andrew, Francis and Paul here in
South Carolina have been very supportive. My brothers from the Oratory are also helping in a variety of ways.
I am receiving all the assistance I need to manage practical life matters and I am very grateful for this.
I am also very grateful for the support, prayers, and love of my Michigan parish families - St. Thomas the
Apostle in Ann Arbor and St. Andrew in Saline.
I am in good spirits as the Lord strengthens and encourages
me. I ask for nothing but your continued prayers that God's will for my life will find perfect fulfillment.
Sincere thanks again for the many, many cards you have sent. Thank you for all your warm thoughts and fervent
prayers.
With love and prayers,
Fr. R.
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