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#149226 05-07-2012 10:57 AM
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Hi All!

I am new relatively new here. I lost my mom 2 weeks ago to oral cancer and have been struggling a lot. Thank you all for the warm welcome in the "Introduce Yourself" forum. Everyone here has been amazingly wonderful and supportive and I can't thank you enough. Being a caregiver to my mother was not only one of the hardest experiences of my life, but one of the most rewarding. I would not take back one minute of caring for her and I am grateful that I had the opportunity.

While I make my way through life without her, I have found myself struggling. Yes of course I miss her terribly, we were VERY close, twins in many ways. However, not having grown up with a strong religious background or affiliation, I find myself doubting what happens next... is there an afterlife? I say that really only in relation to myself. I know for sure that when friends have died, or relatives of my friends have passed away, I can say with certainty that they will always be with them... that they will be watching over them and are not forgotten or have not disappeared. However, when it comes to my own personal experience losing my mother, I can't wrap my head around it. I wonder if it's too soon, because I haven't put her out of the present and into the plane that she is (or may be) now on? I have not had any "signs" from her, felt any comfort from an invisible "hug", or experienced any after death communication of any sort... and while I am not a skeptic of these things at all, I wonder if people really only say these things as a self coping mechanism.

I am desperately praying to "feel" my mom's presence. My father told me last weekend that when she died, he saw her spirit leave her body and move toward the light with a look of amazement and realization of what happens next. I wish he'd told me this sooner! I was there and only saw my own tears and her lifeless body as she took her last breath. It gives me hope but I have yet to experience anything personally that lets me know she is with me. I have been doing a lot of reading lately on the topic and am curious if anyone here that is a caregiver that has lost a loved one has experienced any sort of after death communication. I have never been one to dismiss anything from the realm of possibility and am a dreamer of sorts, but I was raised by a "scientist" who has always looked for facts to explain things, so find myself stuck somewhere in between.

If you have any stories to share, please do, I am so terribly sad today and a little hope might do me good... <3


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Today is 14 yrs ago my mom passed away. I can say that I have dreams every now and than, vivid dreams of my mom being alive and in real time, you know, like now and not when she WAS alive. And there are times my dad will be in them also. I will wake up and have to remember that they are not here. So in watching Long Island Medium on TLC Theresa Caputo, she states that when we have dreams like that, this is the spirit of your family member letting you know that they are OK and are still with you in spirit. I believe in that, I actually hope that this is what happens when you pass away that you are still around in spirit. I've asked my mom for help if I need it, for me, my kids, Ron. Though she never met Ron I'm sure she knows of him. Also I have a grandfather clock my oldest daughter bought for my mom the last Christmas she was alive(we didn't know it would be her last) but my mom refused delivery! Ya she was like that, said it was too much money! So I have it. And in the bottom I have her picture from the funeral home and my fathers and the little things I gave her while in the hospital and a Musical Merry Go Round I bought for her. I rarely wind it up BUT I will go to wind up the clock and it will start to play! I just smile at my mom's picture and wind my clock and close the door. This is what I have experienced that I can think of at the moment. Sorry for your loss, I can't say it gets easier as time goes on but you still miss your Momma. I just can't believe it's been 14 yrs already, yes on Mother's Day was her wake...Now that was sad. It still seems like yesterday.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Dear Aimlee:

I lost my best friend in the world on 10/22/11. She was 51 years old and died of liver cancer and other complications. She was the most amazing person with a huge heart and I miss her more than anyone could possibly imagine! I have a couple of Cindi stories to share with you!

She went into the hospital on Tuesday and for the most part was incoherent (not in a coma though) and I would sit with her and talk to her every day. She worked for an awesome company that sent people to clean the house and shampoo the carpet so that everything would be nice when she went home.

On Wednesday afternoon, I told her that I needed to leave for a while to meet the carpet cleaners and that I would be back. She opened her eyes, looked at me, reached out her arms and said "hold me". I put my arms around her, kissed and told her that I loved her and that I would be back.

At her house, there were papers and stuff by her chair that i picked up off the floor. On top was a purple (her favorite color) spiral notebook. Something told me to look inside. Cindi was not a journal type person but the first page was dated Good Friday 5 or 6 years ago. She talked about going to dinner with her dear friends and neighbors and then going to Good Friday services with the. She talked about how moving and beautiful the service was and that she wanted to go every year. She said when she came home she listened to her beloved Christian music. Rich Mullins (I think that's his name) was her favorite. She goes on about what a wonderful man he was and how much she admired him for his faith and what he believed in. She also said that she should have married him!! She was quite the character!! Anyway, I turn the page and read that her MOST favorite song by him was "Hold me Jesus". I got major chills and I knew that she was ready, that she hadn't been talking to me and that she wanted this song played at her service.

Her brother that she was closest to lives in Montana and got into town very early the morning that she died.He had a meeting to attend and so sadly he wasn't with her when she passed away.

On Saturday, I meet him at her house and we were looking for something that she wanted cremated with her. I looked in her nightstand and there on top was a piece of paper...she had handwritten Psalm 91....another sign. This is the prayer she wanted me to read.

Greg, her brother left the choice of music for her service up to me and I of course read Psalm 91 and Hold me Jesus was played.

She makes me laugh or cry everyday and I know she'll always be with me. And she continues to send me "signs". She had a huge heart and was the most amazing person I've ever known!

Your mom will always be with you! Maybe the signs won't be as apparent as the ones I get from Cindi, but you'll get them!!

I wish you peace.

Cathi

Last edited by Cathi Carpenter; 05-07-2012 12:29 PM. Reason: spelling

57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***
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Oh Aimlee, I had the same close relationship with my Mom too so I know exactly how you are feeling. I had a couple of interesting experiences that I believe my Mom made happen. The first was during her graveside service. We had bought a bunch of white balloons to release after the service. The balloons were tied tightly to a sprinkler head and right before the service started the wind kicked up, released the ballooons and they all floated up into the trees. We all laughed saying Mom was making sure we knew she was there. The first Mother's Day without her I had bought a balloon and went to her grave. I was sitting there crying and talking to her (holding the balloon). The next thing I know the wind kicks up and the balloon comes over and starts stroking my arm...gave me goose bumps. I even said "Mom are you here"? Sorry...I didn't mean to write a book. Keep praying Aimlee, big cyber hugs coming your way.

Love,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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Hi Aimlee,
My dad passed away 10 years ago. He was my best friend and I missed him so bad those first few years, but the first couple of months were just gut wrenching. One night I was having a major meltdown and I told my husband that I just wanted my dad to rub his whiskers on my face one more time. He used to do that to tease me.
That night I had a dream. I was in a store of some sort and standing at the cash register when my dad said something. I turned around and looked at him and said "Daddy, you can't be here. You have passed away. What are you doing here?" He took my face, rubbed his whiskers on my face and said "There's your one last time." I am crying as I write this because of the memory. It was so very real I woke up immediately balling my eyes out and my face felt funny where he had rubbed. It was amazing and gave me so much peace to know that he was listening and watching.

I also had a dream when my Grammy passed away. I was only 17 and was not the best granddaughter in the world. I had made excuses sometimes of why I couldn't take her shopping or do something else for her. When she passed away I had such a burden of guilt for not being more attentive. In my dream I was shopping, (ironically in a store in both dreams and I hate to shop). I was in a clothes store and when I pulled back some clothes to look at them my Grammy was on the other side of the rack. I was shocked to see her, but excited too. I asked her why she was there and she told me that she just wanted me to know that I had been a wonderful granddaughter and that I needed to put my guilt away and have a happy life. Crazy, right?
So, those are 2 of my stories. I had another with my dad, but sadly I can't remember it. It was something very small. My mom was so hurt when I told her about the big dream I had had because my dad didn't come to her in a dream at all. I felt really bad and I don't know why I was blessed, but I wasn't going to apologize. I cannot wait to get to Heaven to play baseball or tennis with my earthly dad and hug my Heavenly Father!!! I KNOW that day will come and they are waiting for me.
I hope this helps.
Blessings,
Kathy

Last edited by KP5; 05-07-2012 12:54 PM.

Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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I've had too many unexplainable signs of contact from deceased relatives or friends not to believe in some kind of afterlife. My daughter has, too. Since it's almost Mother's Day, this one is about my Mother who passed away when my daughter was 11. We had flown to a hospital back East where she was very ill and near death. It was very late at night and children were not allowed in the patient rooms so I left my daughter, 11 at the time with my youngest son, Paul, just under a year old who was asleep next to her. I told her to make sure and watch him and not fall asleep. The nurses had also assured me they would watch the children. I was with my mother for some time, but she was unresponsive, just staring blankly ahead. I told her I was so sorry her granddaughter could not be with her because of the hospital rules but that she loved her and missed her. She was hooked up to different tubes and machines. After a long while of praying, telling her I was sorry for not being the kind of daughter I should have been, and hoping she would say something, I saw a single tear roll down her face. She never responded. Finally, it was quite late and I left to get the children to bed. We stayed at my mother's apartment. Later, during the night the doctor called and said they had removed the life support and my Mom had passed away.

In the morning, my daughter got up right away, was very cheerful and excitedly asked when we would be going to visit Grandma. I gently told her Grandma was very sick, had died and she was now in heaven. My daughter was so insistent saying her Grandma was not sick, that she was ok and that she wanted to visit her! I attributed it to a dream that she had after falling asleep, and forgot about it until years later.

My daughter and I were both students at the University � she a Junior and I a Freshman. We were at the Mall having an Orange Julius, comparing school notes when I happened to mention that I had written a short story for English class about her Grandma and the dream my daughter had had about her after falling asleep that night at the hospital.

My daughter insisted vehemently that she had NOT fallen asleep and that she had seen her Grandma walk down the hall, in her pink robe and slippers on the arm of a male nurse. She said her Grandma was happy and glad to see her and told her that she was fine, now and that everything was ok.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Aimlee,
I also believe that there is something beyond this life, but that sometimes our grief is so loud that we cannot hear the words, or feel the presence that we so desparately desire. My story concerns not the death of a human, but that of a dearly lovely pony. My friend had to have her put to sleep to end her suffering, and I waiting with her as the vet prepared the injection. I asked my dear departed dogs to come and help Strawberry find her way to the pastures beyond. The injection was administered, I turned my friend away from the scene before the pony went down ... and then I could feel my dogs around us, happy and joyful, and I knew Strawberry would be alright.

If you search for a sign, I believe it will be harder to find one. But if you search for good deeds to do, and comfort to give, and beauty to find in this world - you will find solace and peace in the quiet times.

Last edited by Maria; 05-07-2012 04:02 PM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Aimlee - Sometimes the signs come when you least expect them. I'm sure your Mom is close by and wanting to help you thru the sad moments. Everyone grieves in their own way and at their own pace. Sometimes it is remembering the happy or funny moments you both shared that helps. And other times, shedding a tear and having some compassion for yourself is what helps. Sometimes it's just a feeling of warmth and love around your shoulders that helps you to know or feel the presence of a loved one. It can take several months or longer. Maybe talking to your Dad and sharing feelings would help both of you to find loving peace and comfort in the days ahead.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Aimee,

So sorry about your Mom. I had more of a intense and difficult relation with my mom but when she passed I was devastated for awhile so I can only imagine how you feel especially because you were so very close.

My sister and I were convinced we saw my mom in gold mercedes when were on the way to her funeral. She was dressed to the 9s and was smiling and happy. This would have been her style! Who knows- maybe it was another red headed woman but it made us laugh and smile and feel that she was at peace.

Sending you happy good vibes. Losing your mother is such a hard and sad thing. Mother's and daughters have such an intense bond.

Hope you start to feel better soon. Doing some things that she enjoyed helps me keep her in my happy thoughts - like cooking gardening and travelling- All the things she loved so much.

Honor her memory by embracing all that this life has to offer. She would want you to be happy.

She's with you everyday.



Last edited by misskate; 05-08-2012 10:46 PM.

Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
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Hi Aimlee. I'm so sorry for the loss of your mom. I lost my mom 4 years ago to pancreatic cancer. She died at home under Hospice care and the last two weeks of her life were horrific. I also felt like you did when my mom first died. I do believe in Heaven and God and I knew she was going to a better place but at the time it did little to help the hurt, anger and pain. Part of me was at peace that she was in a better place and out of pain but I couldn't put the visual memories of the last two weeks of her life out of my head. The grief was all consuming and overwhelming. All I can say is it takes time. Let yourself grieve and cry. It will get better and the good memories will overcome the recent past.

I also wanted "signs" that my mom was o.k. and still around us. I do have really wonderful dreams about her now but I didn't in the beginning. My daughter, her firstborn grandchild is getting married in September. I can't explain it but I do feel her presence when Pam and I are together "wedding planning". She would be so happy! You never get over it you just get through it. Hugs


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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my dad passed from cancer in 2005, 1 month before my daughter was born. then mom passed away at the end of 07. that winter 07/08 in wa where we lived, we had snow on moms birthday - march 25. i remember i looked up and said OK MOM! enough of that - and i laughed because she knew i hated snow. then on their anniversary - april 19 it snowed again ... at which time i laughed again and said OK YOU TWO! Knock it off!!! and then i thought for a second and looked up again and said if it snows on dads birthday, Im outta here!!! (june 2) LOL

i believe in the afterlife
very much so
and i am not afraid to die because of that
now don't get me wrong - i wanna stick around for my kids and those i love but i am not afraid for the dying part and i kinda get homesick for that place i have never yet seen because i miss so many that have gone there BUT i have work yet to do here so i will be thankful for whatever time i have here and try to be a good steward of that time - and when that time comes, i will say farewell - see you soon to those i leave behind.


i read the book called heaven is for real ... can get it on amazon ... out of the gazillion books i have read, i think that one impacted me most ... and 90 minutes in heaven is also awesome ... perhaps they would bring you comfort?


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Thanks everyone! Your stories have all been so comforting and supportive. I am still waiting for my mom to communicate with me... or maybe she's waiting for me to communicate with her?!


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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For us it is butterflies. Ken has bought me a key chain with one and we decorated Morgan's room with them. The day after his funeral I took Morgan up to the cemetary and brought home a red rose to put on the front step where he took his last breath waiting for the ambulance. As I walked up to the step a monarch butterfly landed in the exact spot and just sat there awhile. I had this overwhelming sense of peace and I knew he was with us. I saw one again on my birthday a few weeks later. This Saturday we had Morgan's birthday and there wad one flying around all afternoon in the yard as we celebrated! I definitely believe! You will find your own signs when the time is right!


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
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Jill - You butterfly experience prompts me to share this: A dear friend of mine died two years ago last January. She had been such a source of strength to me and to my son Paul, especially as he struggled to survive his OC. Before she died, we shared many moments together at the hospital and talked of many things including the possibility of life after death. She told me she would definitely find a way to contact me. In early Spring following her passing, my garage door was open and a large, beautiful blue butterfly flew into my garage and alighted on the sill of the back window. At the time, I didn�t think this was a sign that Ann could have sent. I was expecting something more concrete like a dream, maybe? a vision? The butterfly never moved from his spot on the window sill at the back of my garage. I checked it often and it was always in the same position with its beautiful blue and black wings spread as if ready to fly. Even a year later, the butterfly was still there just as beautiful as the day it flew into my garage. It finally disappeared some time after that. I decided recently to Google this blue butterfly to see where it was native to and found out that the closest place where it is found is in Mexico which is some distance to TN. Don't know how it could have travelled that far but I like to think that this was my friend's sign of contact. And I am comforted.

Aimlee -when you are thinking about your Mother, and especially when feeling sad, you can speak to her in your mind and tell her your feelings. I'm sure one day she will make known how close she is and is loving you through those sad moments.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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It must be something with butterflies. My husband passed away 13 years ago. He was at Hospice House for a few days we had a view of the butterfly garden. Afterwards I was driving down a major highway a butterfly (yellow) was right next to my window. It seemed like he wanted to get in the car. I was hysterical I had to pull over to the side of the road to calm down.

Every now and then a butterfly comes around my picture window where I sit. I look at it knowing it's my husband checking up on me. It's the same color yellow. Yellow wasn't his favorite color it's not that.

It sure makes me feel good inside when I see the butterfly.



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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That blue butterfly was sitting in the garage for a year? And it was alive and never moved? Wow that's crazy. Cool but crazy.
I got an animal one that still freaks me out when I talk bout it. My one Torti calico kitten her name was Callie of course well she ended up getting hit by a car. That evening I went to my sister in laws house and Callie was sitting on top of my grill outside my back door and I rubbed her head and opened the door to see if she wanted to go in and she didn't which is unusual. She was a little bugger, she always went up on my sink and unrolled and scratched up my damn paper towels almost every night! Well the night she died, I swear to God as do my kids the damn paper towels were torn up as usual after my son had buried her earlier. And never happened again after that.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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oh and the reason for my kitty story is I wasn't there to say Good Bye to her and was very upset but she showed me she was fine and still being a little brat but not with me anymore! smile


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Thanks for those stories everyone! The butterly stories seem to be pretty common. When my cousin died at 16, he was 4 months shy of watching his sister graduate high school. On that day a butterfly landed on her leg and stayed with her all through the ceremony. She always believe that was him showing his older sister support on her big day.

In terms of my own recent loss of my mother, butterflies have never really held any significance for either of us... other than that story about my dear cousin but that wasn't something we experienced personally. But the first day I visited her grave after the funeral, the flowers still alive and laying across the fresh dirt, in my thoughts I asked "mama where are you?" and seconds later a butterfly flitted over to the flowers, rested on one of the petals for a moment, then moved on. I have no idea if this means anything, I was skeptical then and am skeptical now, because I don't want to believe that any little sign is her just to make myself feel better. I am struggling through each day trying to learn how to live my life without my amazing mother and best friend, and every night praying that she will come to me in a dream... I don't want to have to wait until I die to be with her again frown


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Aimlee - Your Mom IS close to you and she would want you to feel feel better even if the sign is a very little butterfly. I've been skeptical, too - about many things but I usually find out that trusting one's own inner feelings very often is the correct one even if it's not "scientific". A French philosopher, Blaise Pascal (also physicist and mathematician) once said "Le coeur a see raisons que la raison ne conna�t point" - which translates to: "The heart has its reasons, which reason does not know". Follow your heart, Aimlee.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Dear Aimlee,

Have you considered getting some grief counseling? I did after my Mom died (it was one on one not in a group) and it really helped. Something to think about...

Hugs,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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Hi Shelley,

I have actually, I have an appointment with two different therapists in the next couple of weeks to see which will be a good fit. I knew months ago that I was going to need to talk to someone just from watching my mom go through surgery and treatments, nevermind the grief after she passed. It is all just so traumatizing.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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It's so good that you have those two appointments, Aimlee - A professional therapist can give you the benefit of his/her expertise and can really help in getting you through the grieving process at a pace that is comfortable for you. It looks like you are taking the right steps in your own recovery. Good for you. Check back here often and let us know how you are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Went to see my mom at the cemetery this weekend, 4th visit since she passed, and its also the 4th time a butterfly has flitted around us during our visit. Sometimes I think it's my mom saying hi, sometimes I think it's just a butterfly.

I have my first therapy session today. I'm relieved to have someone to talk to and get some guidance on how to deal with this grief and trauma but also nervous about talking to a stranger and dredging up feelings that I know are going to hurt like hell frown


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Hi Aimlee, firstly, I'm really sorry for your loss. I was the last to feed my hubbys dad who passed 4 years ago of pancreatic cancer. I constantly feel him around us and feel he is looking after us. I'm sure he won't let my husband join him for a long time to come. I don't know how I would react at my husbands death if it was a recurrance of oral cancer. I always think I will go too because I couldn't stand him not being around me. Sounds silly, but when my cat of 18 years was put to sleep, I had him cremated, and his ashes and a pic are right in front of me while I write this. I find it comforting, and talk to him all the time. I know my cat isn't the same as your mum, but there are things that can make you feel better - butterflies are a sign....take some comfort in that....Bless you hon, and hope your grieving time passes easily & gently. I'm sorry, I don't know what else to say. I still grieve for my cat, if it was my mum, well....don't know. You sure do sound stronger than me! Lots of love xxxx


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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Thank you Jeanna, you're very sweet. I have so many mixed up feelings about all of this, and I know it's all very normal but I just don't feel like myself anymore. My entire existence changed the day she died, and I know it's an opportunity to become the person I've always been meant to be, I just feel so lost trying to get there. I was incredibly close w/ my mom, and the remaining family members have been a little less than supportive. Last night my dad asked me if I was ok, he must have sensed during my visit that I was upset. When I told him that it is still hard for me (as I imagine it would be for most people after only 6 weeks!) he said he didn't want to see me drown in my grief. I don't think I've been drowning at all, and while I appreciated his concern, it made me feel like he thought I should be over it by now. I don't know how to react to this. I'm assuming it's something that will come up in my next therapy session...

I still can't quite get my head around her being gone, and don't want to seek solace in just any "sign" that comes along so I am skeptical. I went to see her yesterday and no butterfly frown

I'm sorry you and your husband had to struggle through this horribly dreadful disease, but am glad to hear he is doing well.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Aimlee, First, I am so very sorry about the loss of your Mom. I find your story about the butterflies very interesting. You asked stories about similar experiences, I have one. After a brutal 2 year battle, I lost my Mom to colon cancer when she was 54 years old. My newly married, 36 year old brother, John, died suddenly in a plane accident. Both deaths were extremly (beyond) difficult. After John's death, I started to get scared of flying. Rather than succomb to fear, I followed both of my brother's footsteps and learned how to fly, getting my private pilot's liscense 2 years later. During my first solo flight, I was very nervous. My father (who was still dealing with his son's death), husband, 2 year old son, siblings and friends were all there watching. I got to the end of the runway, on the numbers, added power, took off...and as soon as I got airborne thought, DANG..now I really do have to land this thing on my own! As I got midway through the pattern, on the downwind leg, 2 birds joined me for a while. I explain why, but those birds gave me great comfort and calm. I've always wondered if they weren't a sign from my Mother and brother. In the 15 years since, I've heard a good number of others with similar experiences.

As Americans, I don't think we handle death terribly well. We seem to want everything neat and tidy. You have a death, a wake and a funeral, then everyone expects you to move on. I had friends 5 days after my Mother's death tell me they didn't want to see me moping around. Give yourself a break, six weeks is a very short period of time to adjust to such a loss. That said, I do think talking to someone is a very important step in processing your loss. I did not find grief to be a straight line....today you feel bad, tomorrow a little bettter, then better, etc. The loss will sneak up on you again on certain days; first Mother's Day, Christmas, Birthday without her. It was especially tough when my boys were born. My recommendation is to find someone, a professional, friend or family member, who will let you just talk, let it out, listen to you.

One other thing we've done in our home is we celebrate Dia De Los Muertos, something from my Father's culture. Every year, I set up an "ofrenda", put out pictures on a sideboard in the dining room of the beloved members of our family who have died. It gives us a special time to remember then, tell stories, remember the good times. It's the only way my sons know their Grandmother and Uncle. You don't have to have Mexican heritage to do this...:)

So these are some of my experiences and how we've dealth with our losses. Again, I'm very sorry for your loss, I know how hard this is. Please know that it does get better. Hugs, Ana

Last edited by AnaD; 06-11-2012 07:38 AM.

wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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Amy - I think of you often and am encouraged that you continue to join us in expressing your concerns and feelings. It's good that you have family even if they may not be as supportive as you feel they should. Sometimes in expressing our concern to someone surviving a loss, it's difficult to know what or how to say it. The fact that your Dad sensed that you were upset, means he really cares about you and about how you are processing the loss of your Mother. Sometimes the message received is not always the message sent. It's very possible that the words he used may not have had anything to do with thinking you should be "over it by now" but it could just have been deep concern for the hurt you are feeling and wanting to take away some of your sadness. He is probably feeling sad, too. Maybe he needs a hug?


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hi aimee, I totally understand your feelings. My mom was my best friend, I spent more time with her than anyone, I guess other than my husband, but you know, lots of free time was spent together...shopping, gardening, cooking, talking, relaxing,etc. Its been since aug 2010 that she went away and I find with every new Season or holiday I miss her the most because everything reminds me of things we did together. I can say with certainty I do feel her with me at times - I also do not come from a religious background although my mom was a christian. I remember questioning SOHARD and so much when she passed, and being so sad at the thought of never seeing her again. I even convinced myself I needed to join a church, which I never did. Im still not convinced prayers are worth a damn.
After many months she began visiting me in my dreams. Sometimes sick, sometimes not. I treasure those dreams and always wake so happy that I got a visit from her, it always seems to happen when I need her the most. I was 2 months pregnant when she passed,my daughter is now 15 months and I need her help and guidance so bad. I think all you can do in your down moments is just be positive with hope that she can hear you and just talk to her, cry to her, yell and hit pillows!, tell her you miss her. She always said theres nothing a good 'boohoo' wouldnt fix

Best
Emily


my mom, age 59.

12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
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Thank you Ana, Anne Marie, and Emily! Your words are so heartfelt and appreciated. It really does help to know I'm not alone. Because losing my mom has made me feel a bit like an orphan, if that makes any sense. I know I'm an adult and have been for some time, but your mom will always take care of you in any way possible, even just with the smallest gesture as we need them less and less as we get older. My mom always would buy extras at the supermarket if something was on sale and give it to me on my Sunday visits, or if my favorite gum was on sale she'd pick up a couple of packs. The little things like that that always made me feel looked after. Last fall right before she went in for her surgery, she even bought my snow boots for the winter because I didn't have any good ones and living in the city walking to and from work I had a mess of a winter the year before. She was afraid she wasn't going to make it through her 10 hour surgery so she bought them in September to make sure I would be taken care of in her absence. She devoted her life to being a mom and was the best possible mother I could ever imagine having. I miss her so darn much, it creates a lump in my throat just as I write this.

I talked to my dad yesterday... he texted me in the AM to see how I was doing. Turns out Mondays are hard days for him, neither of us are sure why but I felt better knowing I wasn't the only one still struggling. Ann Marie, you said it right in your post, the sentiment was right in his message it was just misconstrued. I think I am hypersensitive to the fact that there has always been some lack of support from my father and sister throughout the entire illness with my mom so I just expect it to be that way now too. I know he is trying and I appreciate it. It's just hard because my mom was my counterpart in the family and w/ her being gone, there is nobody quite like me/her to share this grief with. At least not in the way that she and I would have shared it. If that makes any sense.

Ana, thanks for sharing your story and for the suggestions on how to honor and celebrate my mom. I love that you had two birds soaring alongside you on your first solo flight, I think that is a true sign that your mom and brother were with you. I am hoping some day I will have a similar story to tell.

Emily, I'm sorry about your mom too. We definitely had a similar relationship. Were you pregnant with your first child when she passed? That must have been so hard frown I'm not married and don't have any children yet myself and that has been one of the hardest things to accept... that she will never be there to help me like she was able to w/ my sister, and that she won't be my children's grandmother frown

Last edited by aimlee311; 06-12-2012 06:10 AM. Reason: addition

Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Aimelee, what you say about feeling orphaned makes perfect sense. I don't care how old you are when it happens, your mama's always your mama. When I lost my Mom, someone gave me a wonderful book, "Motherless Daughters". I highly recommend you have a look at it as it may speak to your heart as well.

As you know, my Mom passed well before I was married and children as well. Although they do not know her in flesh, I've made sure they know her in spirit and through little daily things in our lives. The peonies planted in the front flower bed, next to where my son waits for the bus, are her favorite...and he knows that. They know her and her sisters (my aunts) cheated at cards, drank grasshoppers and giggled way too much. They also know she was an incredibly bright and strong woman. Your Mom will always be your one-day children's grandmother, nobody can take that away.

I know you're looking for signs/proof that she's nearby...I've done the same with my brother and my mother. Things happen that make you wonder...was my son looking over my shoulder and laughing, a lot, as a baby a sign? My sister reported almost the same thing with her baby, was that a sign? I don't know. Here's what I believe....if they are able to be around in spirit, I can think of no other place they would want to be than near their loved ones. I don't know if that gives you any comfort, but it helped me. Hang in there, Ana

Last edited by AnaD; 06-12-2012 07:15 AM.

wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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Thanks Ana! Funny you mention it, I just bought that book a few weeks ago! I have gone through it a bit, not fully ready to jump into it, but have read a chapter about a girl who lost her mother around the same age as me, to cancer. I totally identified with everything she said and it helped a lot to be able to relate to someone about the exact same things that I've been feeling.

Your words are so comforting, I do hope that she will be with me. Sometimes I do think that she is, I was the baby of the family and she was always so protective of me and when she was dying she was SO worried about me being ok after she was gone. I can't imagine she would be anywhere else... though I do hope she's enjoying being reunited with my grandfather, my cousin, and a dear friend of ours who passed far too young.

I have a similar story about a friend of mine. Her mom died before she had her children also and when she went for the ultrasound of her second child, her first child kept pointing to the door saying he saw grandma. He'd never met her, but had seen many pictures of her. When she told me that story I got chills. I do believe in it, I just need to feel it for myself I guess.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Thank you for saying that Ana that she WILL still be your children's grandmother. She is your blood, she will be their blood, she will be in your children and you will see that in them when the time comes to have your own. And when my dad passed away my niece was a very young and she told my brother and sister in law that grandpa was there or she would just say "hi grandpa" or my grandchildren would stare and watch or smile when they were babies as if somebody was there that we couldn't see but they did, it was eerie but yet it was peaceful. Even though my brother is a scaredy pants and it just freaked him out whenever his daughter did that, we all thought that it was awesome and would ask her when we were there if Grandpa was there too! He never was...darn it. He passed away before I got to the damn hospital cuz I was at work and had to stop and get my medication before I went for my blood pressure...we all thought he had a stroke...it was a heart attack. My brothers were there but only saw him come in from the ambulance and said he was sitting up awake when he was brought in. How things can happen so fast. Well you keep your head up and just remember the good times and let them make help you to smile!
I have to find my mom's card from her wake and type you the poem I picked out. I can't find it online right now.



CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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My granddaughter used to have an imaginary friend when she was little. Her dad's mother passed away before she was born, and one day she saw a picture of her and said, "That's HER! That's MY FRIEND!!"
A friend of mine's dad passed away before she got her girls and they used to tell her that there was a man outside their window at night. They identified him the same way via a family photo.

They are with us.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I love these stories, thank you both! It does give me hope that one day I will feel her presence, and that she will still be a part of my children's lives when the time comes. I miss her so darn much.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Aimlee, Your post was the one that let me know how close my mother was to her last day. I went to her after I read your post and I was able to spend the last three days with her. she died on December 10, 2012 and followed the exact progression as your mom.

I am missing her and looking for signs as well. Thank you for posting. it has helped me not feel so all alone.

MEWS daughter

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