Date and Time here
This page has just been created. Please check back for additional updates.
Sunday, January 11, 2004 10:27 PM CST
9/3/03 Doctor visit, tests for symptoms of garbled speech x2 in a weekend. Tests show mass in brain.
9/5/03 Craniotomy by Dr. Marie Long in Decatur IL - left temporal lobe debulking. Inoperable sites in left temporal lobe and right temporal lobe. Diagnosis: Glioblastoma Multiforme. Sent home 2 days later on dilantin, decadron, nexium. Plan for treatment/goal to slow or stop tumor growth, possibly shrink it. Very aggressive and malignant cancer.
9/11/03 Went to Mayo Clinic for 2nd opinion - agreed to start chemotherapy Temodar with radiation for 6 weeks - to be done at DMH.
10/04/03 Decided to consult major brain tumor center for treatment. Contacted Duke University, and will go after radiation is complete.
11/03/03 Finished radiation treatments.
11/18/03 Went to Duke. MRI SHOWS GROWTH. Started CCNU/Celebrex. Still functioning well, goes to YMCA for workout, very active, naps most afternoons. Speech deficits common.
12/29/03 MRI STABLE. Another round of CCNU/Celebrex (6 week round).
1/12/04 Going to Florida w/wife, friends until next MRI.
2/04: MRI shows growth. Opening for trial of Temodar/CPT-11/O6-BG. To get treatment at Duke every 3 weeks. MRI every 6 weeks.
3/04: Blood clot in leg. Hospitalized at Duke. Dad not happy. Continuing on trial - will go to every 4 weeks instead of every 3.
3/24/04: Mike and Marci visited in Florida. Had a very nice time. Golfed, ate and talked. Great visit!!
4/15/04: Continuing on trial. Back from Florida to Decatur IL!! Still golfing (not so good - handicap increasing!!)
5/29/04: Celebrated 40th wedding anniversary with friends and family in Decatur IL. Great time.
8/4/04: MRI shows growth. Will stop clinical trial. Now going to do CPT-11 in higher doses. Able to get it in Decatur. To go back to Duke in 6 weeks.
9/04: MRI shows slight growth of tumor in left temporal lobe. Adding Iressa to current regimen of CPT-11. Duke scheduled for 10/26/04.
10/04: Becoming very weak, sleeping alot. Not golfing anymore, unable to work out at YMCA. Too weak to make trip to Duke.
10/26/04: MRI done in Decatur, scans sent to Duke. MRI shows slight growth, still weak. Decision to stop all treatments made. Will remain on decadron (steroid to keep brain swelling down and also pain), and
anti-seizure meds.
11/04: Hospice care called, and first visit. Update sent to family and friends regarding decision, welcoming visitors.
11/17/04: No real changes. Just becoming weaker. Still able to go to lunch and/or dinner with friends, family, sleeping a lot between visits. Most communication is with facial expressions and few word phrases. Very difficult to speak, as the right words do not come out.
Wednesday, November 17, 2004 9:44 PM CST
Tuesday, November 30, 2004 9:24 PM CST Hello all! Monday, December 6, 2004 9:25 PM CST Hello! Sunday, December 19, 2004 8:35 PM CST Hello,
Friday, December 24, 2004 10:22 AM CST It's almost Christmas and Dad is hanging in there! No much new to tell. It's soooo cold and he's not been out of the house for over a week. I think he won't be leaving, either. He has submitted to using the wheelchair to get around the house now, as his right side is too weak to hold himself up.
Thursday, December 30, 2004 9:50 AM CST Hello everyone, Sunday, January 2, 2005 0:41 AM CST I'm going to try and update this site every week or so, but if you are here for the first time, you can get a good overview of what's happening by looking at the journal entry dated November 18th. Sunday, January 2, 2005 0:41 AM CST I'm going to try and update this site every week or so, but if you are here for the first time, you can get a good overview of what's happening by looking at the journal entry dated November 18th.
Monday, January 10, 2005 7:56 PM CST Hi all, Sunday, January 16, 2005 8:34 AM CST Dad passed from this life Saturday January 15th around 12:30am. He died peacefully in his sleep. Mom said goodnight to him around 11pm; the nurse went to turn him in bed around 12:30 and he was already gone. The battle is finally over.
Wednesday, January 19, 2005 10:24 PM CST Hello all,
Sunday, May 22, 2005 10:14 AM CDT Hi everyone,
Hi everyone,
I started this website last January, and now that I've figured out how to create it, I want to finish it and keep adding from here. There will not be that many updates since Dad is no longer receiving treatments; however, you can read the journal history if interested.
To make a long story semi-short, Dad was diagnosed with Glioblastoma Multiforme, the most malignant and aggressive type of primary brain cancer, on September 5th, 2003. He was given a short prognosis, 18 months average, to live, and was advised to get all of his affairs in order. He had surgery which removed part of a large tumor in his left temporal lobe (the speech area of his brain), but some of it remained, along with 2 other smaller tumors (one behind the resected one, and one in the right temporal lobe). After doing a lot of research on this disease, we found that there ARE long term survivors out there, the disease CAN be fought, and we elected to FIGHT IT hard; this decision led us to find a major brain tumor center that dealt with this disease daily. We went to Duke University and begun the fight.
It started with radiation treatments in Decatur, along with chemotherapy. After 14 months of MRI's, multiple medications to control brain swelling and seizures, clinical trials at Duke, and several cycles of various chemotherapies, it was determined that the tumors were not shrinking, they were growing, and Dad's body was feeling the effects of the poisons being pumped into him. Therefore, the decision was made after much discussion with him, our family and the doctors to stop his treatments and allow his body to take a break and let nature take its course.
We decided to use the services of Hospice Care through Decatur Memorial hospital to facilitate any care he might need as his disease progresses. For those who are not familiar with hospice care, I will give you a brief overview: hospice care is a whole division of health care provided to people and their caregivers and family who are determined by a physician to be terminally ill (less than one year to live, although some happily live longer), and who no longer receive treatments to prolong their life, specifically chemotherapy, radiation, or artificial feeding. The goal is for the patient to remain at home (or in a specially designated hospice facility) throughout the process of their final journey until death. The care is facilitated through a primary nurse, who reports to a physician (in our case Dr. Esparez, our local oncologist), and anything that Dad and Mom may need throughout this process is carried out by the nurse. This might include getting hospital equipment brought to the home (bed, wheelchair, walker, etc.), pain medicines if needed, bath aids if needed, volunteers, and emotional support and information, as well as assistance in funeral arrangements when the time comes. I have known and talked with many people who have used hospice care for a loved one, and the most common response I get is "I wish we'd had them sooner." In our case, I believe we are getting them "sooner," and it will allow the hospice workers to get to know Mom and Dad, and be able to fully facilitate what is needed as they need it, not AFTER they need it.
So far, the hospice nurses come to see my dad twice a week, and while he's not real thrilled with having them, he doesn't fight it, and it is nice for my Mom to be able to have the objective support and knowledge that IF they need something, she knows she can call them and they will be there. Currently, Dad is becoming weaker, but he enjoys visitors and occasional lunch and dinner outings with friends and family. He often cannot speak well, but as was always true, his facial expressions and smiles speak volumes at times!!
A special note to the "angels" in our lives - you know who you are: taking my Dad to the store, coming to sit with him so my mom can get out, going out to lunch with him, mowing their yard REGULARLY for over 8 months - you've all gone above and beyond the call of duty, and most of all, you've given my parents the gift of your TIME, something that cannot be bought or replaced. It is truly treasured, and because of friends and family like you, we are very blessed amongst the evils of this illness. So, THANK YOU, thank you, thank you.
Keep us in your prayers. We pray for peace, no pain, and little suffering.
Marci
Daughter to my first favorite guy in the whole world!!
PS: Mom and Dad's email is LDM8864@aol.com
I've been getting a little flack for not updating this site, and I guess I'm glad that folks look at it, so here's the latest: Dad is hanging in there like a trooper -he actually went to a party on Sunday and Tuesday was the annual MCK party at Tuscany, and he was there as well. There was a big turn-out this year, and he hung out in the back at a table. He enjoys seeing people and having them talk to him even though he can't say a whole lot back. His facial expressions and nods/head shakes say a lot sometimes, as does his smile or even his smirk... :-)
He's sleeping a lot when home, which is most of the time, but I know he enjoys seeing people in small numbers. I think maybe the MCK party was a bit much (meaning too many people), but he still enjoys socializing, as always.
The good thing is that he doesn't seem to have any pain - the bad thing is that he couldn't really tell us if he did; however, I think we would be able to tell, and so far, it doesn't seem as if pain is an issue. Increasing confusion and fatigue (along with what seems to be inborn stubbornness if those are words) seem to be the issues at hand.
We had a nice Thanksgiving with Mike and his family and me and my family - our grandchildren count is 5 kids aged 6,4,3,1,1 and we somehow made our dinner coincide with naptime for all - so it was thanksgiving dinner in peace!! Nice day. We are thankful for so much, including the time we've had, the time we have, and that there's so far been no physical pain for Dad.
Thank you all for your prayers, support, journal entries, nice words, etc. I am still amazed by the number of people that support my family - we are soo blessed.
That's it for now. If you haven't seen this site before and want an update on the course of his illness, just click on the "view journal" and you read it all.
Marci
It's been over a month since treatments have stopped, and there are good days and bad days. Dad tends to sleep many hours of the day, and on a bad day he is confused when awake and very unsteady. On a good day, however, (like when I visited last night), when he gets up, he will walk to the family room; we're trying to get him to use his walker but he really doesn't like it and wrinkles his nose and acts out like we think he's vegetable... it's very "Dad" like and it's kinda funny. On the good days he will sit up and be a part of the conversation, eat well, smile, smirk, make faces, and little dance moves with his arms. I think he enjoys short visits with just a few people, rather than larger gatherings. He is hanging in there, and he's still smiling!
Anyone new to this page can see the previous updates under "view journal history."
Mom's email is: ldm8864@aol.com
Dad is hanging in there, but is continuing to be weaker. He needs help with walking but still wants nothing to do with the wheelchair. I'm sure that soon he will not be able to get around without it. It was suggested by hospice that we hire a nurse to stay there at night "on duty" so that if and when he tries to get up, someone is awake to help him. Obviously my mom cannot be awake 24/7, so I am glad they have hired someone to come in so that she can try to get some sleep.
He still enjoys having visitors, even if he sleeps part of the time. He will occasionally get up and join the group when someone comes over, then go back into the living room to sleep (or else just sleep on the couch with the blanket pulled over his head :-)). With the weather the way it is, I don't think he'd want to go out even if he WOULD use the wheelchair. Too cold!
Nothing else to really tell. Keep checking!
Marci
A friend of his came over the other day and read to him a couple chapters from a cute book about remembering back boys being 13 or something. Mom said Dad seemeed to like it, so if nothing else, he wouldn't mind hearing a story or too.
We are gearing up for Christmas Day at Mom and Dad's, and looking forward to it. Thank you everyone who has been able to come visit, bring food, good humor and smiles to my parents.
Merry Christmas,
Marci
Daughter to my first favorite guy in the world!!
The celebration of Christmas was very special this year. We spent the entire day and night at Mom and Dad's house (my family and Mike's family) and it was very nice. Dad sat up in his bed in the living room and we all sat around opening gifts, while the kids were sleeping... (???more like talking and having an all night slumber party upstairs except for the babies!) Dad had his new favorite drink - Bailey's on ice while we talked and opened. It was a great day.
He is hanging in there, and seems to be comfortable, although weaker and sleeping a lot. Still smiling and laughing, often at himself as he can't get the right words out and realizes what he says doesn't make sense. His smile makes us all smile.
I'll update "next year!"
Happy New Year,
Marci
Mom and Dad caught the flu bug that has been going around, so needless to say the week between Christmas and New Year's was not so pleasant at the May household. But Mom is fine, and Dad is getting better; however, I think it's hard on someone who's already nutritionally compromised to get the flu... however, Dad is hanging in there, as usual.
New Year's Eve was a beautiful day here (almost 60 degrees) so my good friend Mary and I (also a nurse) decided that Dad needed to see the light of day (literally). We got him up and took him outside in the wheelchair and rolled around outside a little bit. It was refreshing, although the wind was a bit chilly. However, Dad hadn't been out in a few weeks, and I think he enjoyed it, even though I got the look of "what the he*& do you think you're doing??" It was quite funny trying to get the wheelchair up and down the steps to the driveway... but we're a couple of tough brawds.
Hospice nurses continue to come 3 times a week and we have still have a nurse stay there at night, so not a whole lot has changed, as far as that goes. I know Dad likes the visits he has been getting from various friends and relatives. Thank you to everyone again, for all your support, encouragement, prayers, visits, food, and time. We are so blessed to have all of that which no money could ever buy. As the Christmas season ends, we are reminded of how faith and hope can make the world of difference in our lives.
Happy New Year to all.
Marci
Daughter to first favorite guy in the world...
Mom and Dad caught the flu bug that has been going around, so needless to say the week between Christmas and New Year's was not so pleasant at the May household. But Mom is fine, and Dad is getting better; however, I think it's hard on someone who's already nutritionally compromised to get the flu... nevertheless, Dad is hanging in there, as usual.
New Year's Eve was a beautiful day here (almost 60 degrees) so my good friend Mary and I (also a nurse) decided that Dad needed to see the light of day (literally). We got him up and took him outside in the wheelchair and rolled around outside a little bit. It was refreshing, although the wind was a bit chilly. However, Dad hadn't been out in a few weeks, and I think he enjoyed it, even though I got the look of "what the he*& do you think you're doing??" It was quite funny trying to get the wheelchair up and down the steps to the driveway... but we're a couple of tough brawds.
Hospice nurses continue to come 3 times a week and we have still have a nurse stay there at night, so not a whole lot has changed, as far as that goes. I know Dad likes the visits he has been getting from various friends and relatives. Thank you to everyone again, for all your support, encouragement, prayers, visits, food, and time. We are so blessed to have all of that which no money could ever buy. As the Christmas season ends, we are reminded of how faith and hope can make the world of difference in our lives.
Happy New Year to all.
Marci
Daughter to my first favorite guy in the world...
FYI: if you are visiting for the first time, see November 18th for the "major update" - all entries since then are mini updates.
Just a couple of days ago, the hospice nurse had a hospital bed placed in the living room. That is Dad's new "living quarters". He sometimes gets up in the wheelchair and eats at the table or goes to lay on the couch in the family room, but since the hospital bed moves up and down from laying to sitting it's almost easier just to stay in it. He is almost totally paralyzed on the right side, so he cannot do anything with that side. Since his main tumors are on the left side of the brain, this is to be expected. And since he's right-handed, we have to remind him to use his left side - like to eat and hold a cup, for example.
Since the computer is upstairs at my folk's house, he has not seen the website and entries that so many of you have written. So, yesterday I printed them all out (18 pages!!) and read them to him. He (as well as mom and I) REALLY enjoyed hearing from so so so many different people. WOW! I do read them every day, but I often don't know who you are so it's nice to have my mom fill me in as I read the entry. I must say I think my Dad was truly touched - he stayed awake the entire time I was reading; he smiled, laughed and even had a couple tears roll down his cheek. And get this - as of Sunday, this website had been visited over 1700 times!! AMAZING!!
We are so lucky to have so many people praying for us and thinking about us. Thank you, everyone, for all you have done, whether it's a prayer, a thought, an errand, a note or card, coming over to talk, making and bringing food, just listening, etc. It is all so appreciated, and it makes this journey so much easier to bear.
Marci
Daughter to my first favorite guy in the world
Arrangements are: visitation Monday 4-8pm at Brintlinger and Earl Funeral Home. The memorial service will be 11am Tuesday at First Presbyterian Church with burial at Fairlawn cemetery to follow. You can view the on-line obituary at www.legacy.com/herald-review
Thank you everyone for all your love, support and prayers. I will miss him dearly - he's been the best leader of life I've ever known, and I'm very blessed. Many say the world is a better place because of him - I know my world is, and I look forward to sharing stories about him to my children someday.
Marci
Daughter to my first favorite guy in the world
If you hear the song "Dancing with the Angels" by Monk and Neagle, it is perfect for him. I'm sure he's up there in heaven dancing up a storm!
These last few days have been so heartwarming. Dad has passed, but the memories of him will live on in the stories, tributes, and memories -- forever. We will keep this site for people to share any thoughts and memories they wish, and will print them all out for us to view in the near and far future.
So many people have thanked us for this site, but it is really us, the family and friends who loved Dad dearly, who have benefitted from this site. It has been so helpful in our mourning process as the good times SO outweigh the bad; this site helps us to keep the good ones alive.
The memorial service for Dad was something we will remember in our hearts forever until we see him again someday - I couldn't help but smile through the whole thing, and I smile at all the entries in the journal, as I check it daily. Thank you to all who have shared your stories and memores - we treasure them and will continue to do so, so thank you for opening your hearts to all, but especially to us, his family. We are so proud of this man and his footprint is on our souls forever.
You can view the online obituary at http://www.legacy.com/Link.asp?ID=GB03046586.
Thank you,
Marci
Daughter to my first favorite guy in the world
"Dancing With the Angels " -- there is no doubt!!
I'm amazed at how many people have viewed this site! I am excited to add something new. My friend Steve Grohne and I are creating a team in memory of my Dad for the Relay for Life event on July 22nd in Macon County. Dad's firm May, Cocagne, and King is our corporate sponsor, and many in the firm are supporting the cause by walking, making a donation, just being there, or all of the above.
We are looking for walkers and for donations. The event goes all night long, so you could come and go as your schedule permits, or come and stay all night. All proceeds go the American Cancer Society and for services in Macon County.
see http://www.decaturnet.org/relay/
I'll update more as we go, but if you are interested in helping, please email me (Marci) at marcimay@insightbb.com.
Marci
daughter to my first favorite guy in the world