| Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | i regret to inform you that we lost our battle today. we got a wednesday evening that the ICU doctor said things did not look good and we should come up to syracuse. we drove up wednesday night and arrived at 1 am. we went to bed, and went to the hospital at 10 am yesterday morning. we met with the doctor and he showed us the CAT scans that were taken recently. the cancer was everywhere- all over his lungs, his mouth, his face, his sinuses, moving back below his chin towards his spinal cord. his face has been growing more and more contorted each day and he showed us how the tumors were growing so fast they were pushing the bones, which is why he has been in so much pain this week. he doctor advised us that he was dying and there was nothing they could do at this point to stop it. fortunately the night before trevor's mom had found his living will. according to that, if faced with a terminal illness, he did not want to be kept alive and suffering. he wanted no antibiotics, just no pain and to die peacefully. the doctor said he felt we were there and had a plan to help him achieve this last wish. we finished his antibiotics throughout teh day. trevor's younger brother flew in from LA and landed at 8:30 pm. i picked him up and took him to the hospital. of course i could not tell him what was wrong, but he knew something was up if we were going to the hospital at 8:30 pm. we explained to him what had happened. at first he was in disbelief but we showed him the scans and the doctors explained how bad it was. at this point he was not breathing on his own aside from the ventillator. he had not done well off the ventillator the past few days this week. we had a last rites service with the family pastor. it was very hard for the family,but i am so grateful that he was able to give us this closure. they took the ventillator off at 11 pm. the doctors advised us it would not be long before his breathing stopped and then his heart stopped. they said it would be minutes. they gave him adavan for anxiety and lots of morphine. he was really not conscious at this point. he did not feel anything that was happening. they said it was basically only his lower brainstem that was still functioning- what gave him basic human functions like breathing. well 1-2 hours went by and he was still breathing and oxygen levels remained the same. they said we could go rest and they would come get us the minute things dropped. trevor's mom and brother did not want to be in the room so they laid down in the waiting area. trevor and i stayed in the room with him all night. the nurses and doctors were so kind to us and not only made him comfortable but were so comforting to us, bringing us blankets and pillows and coffee and whatever we needed. they explained everything to us if we asked, and were just there to be with us when we needed them to be. around 6 am the nurse came and brought his mom and brother in because his heart rate suddenly plummeted. we did not see him moving at this point. the doctor came in and let us know that he was gone. i cried so much throughout the day yesterday but i just looked at him with peace. he was such a fighter and he knew it was his time to go. we are at peace knowing his suffering is over. i can't thank OCF enough for all the help they have been for me. i am so grateful that one of my worrisome nights last fall led me to stumble upon this message forum. it served as a place for me to vent, seek insight and advice, and learn from others experiences. i am so sad he will not physically be able to make it to our wedding which is 2 weeks from today, but the doctor said... he knew it was time to quit... because he did not want to ruin our wedding. i know he will be with us in spirit. we have already planned for our wedding favors to be a donation to OCF in his honor. 1 week from our wedding we will be participating inthe Oral cancer awarenes walk in andover NJ. i am really looking forward to honoring him in this way. All my best to all of you, Katie
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Katie, I am so sorry for your loss. Your FIL fought a long hard battle. Im glad he was able to go so peacefully without feeling any pain with his family there by his side.
I love your idea about doing donations in honor of your FIL.
Im looking forward to seeing you for Susan Lauria's September walk. I also sent you a PM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Katie,
I am so sorry to hear of your FIL passing. Just reading your recount is so intense. I can't imagine how hard it has been on everyone. My thoughts go out to your family.
May your special day be the best it can be!
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Katie: You also have my deepest sympathy. May the good Lord help you and Trevor, and the rest of the family through this great loss. One thing for sure, your future father-in-law will definitely be present at the wedding and you'll feel his spiritual presence. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Katie
You've been an outstanding future daughter in law. I remember the drama back in March when your FIL was balking at attending your wedding. It took courage and character to stay the course yet still be so loving to him. I'm impressed by your FIL's living will - that is the way to go in my mind also. Your OCF donations at the wedding confirms your support of FIL.
charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | What a shame. This cancer is so horrible. I'm glad he went painless and I'm glad you all were there and I'm glad someone thought of the last rites.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Katie,
I've very sorry to hear about your future FIL. He fought long and hard and is now at peace. You have been a very thoughtful future daugther-in-law and I'm sure he wants nothing but happiness for you on your wedding day and in your life together as husband and wife.
I plan on attending the OC walk in NJ so I hope we can meet there.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Katie-I'm so very sorry. Try to concentrate on your wedding now. I'm sure your Father in Law will be with you every step of the way!
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2010 Posts: 135 | Katie, I am so sorry for the loss of your future father in law. Best wishes to you and fiance.
D
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | thanks and love to all of you!! XOXO.
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | My condolences on your loss, you and your family are in our prayers!! Try and enjoy your wedding day!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | My deepest sympathy to you and your fiance on the loss of your future FIL. I am cerain he will be with you in spirit on your wedding day.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | I am so sorry for the loss of your FIL. The party favor/OCF donation is a beautiful way to honor him. I hope your wedding day is a joyous and happy one.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | So sorry to read of your loss Katie. I have no doubt you will have your FIL smiling down on you both on your wedding day. My thoughts are with you all.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
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