| | Joined: Sep 2013 Posts: 9 Member | OP  Member
Joined: Sep 2013 Posts: 9 | I'm truly heartbroken. My beloved Katie left us last Friday. Valentine's Day, of all days... She was at her Mom's apartment in NYC, so at least our two young children didn't have to experience the trauma of seeing paramedics trying to revive their mother. Maybe part of Katie knew this. The last two months have been hellish. We stopped radiation treatment at the end of December because her BOT tumor wasn't responding anymore to the treatment. We were trying to get her well enough to qualify for a clinical trial, but the truth is that she may never have gotten well enough. Without anything holding the tumor at bay, we think it grew extremely aggressively and started impeding her esophagus and eventually her trachea. In mid-January, she finally tried to swallow again...to exercise those muscles in prep for the trial, and discovered she really couldn't. The tumor was blocking her esophagus enough that the liquid would just come right back up and out her nose and even out of the open wound on her neck. It was horrific. On Thursday, the day before she died, her Mom reported that Katie's breathing wasn't great. I strongly suspect that the tumor was starting to impact her trachea also. On Friday morning, her Mom gave her methadone and it knocked her out (as all the opiates did) and a few minutes later, when her Mom came back into the room, Katie wasn't breathing. We think her heart stopped, and then she just slipped away, without any pain, without any fear, and in her childhood home. All things considered, not a terrible way to die. So it's been a week now and it's not really any easier. I know that with enough time, the pain will fade and I'll be able to focus on the good memories, but whoo-boy is this not an easy time. I've set up some grief therapy sessions for myself and my kids in two weeks (at Good Grief in Morristown). This should be a good thing. I'm spending time each night with both my kids (ages 5yo and 6yo) telling them stories about Mommy and showing them pictures and videos. I want them to have some solid memories of her that they can carry with them forever. It's incredibly difficult for me to do this, to sit and scroll through endless photos of my beautiful happy family and to see videos of Katie singing like an angel. But I'll do it for my kids. They deserve to have memories of their mother without the cancer. My brother has set up a College Scholarship Fund for my kids. People have been extraordinarily generous. I will be donating a portion of the final amount to the Oral Cancer Foundation. While going through Katie's phone, I found she had recorded herself singing "Smile" by Nat King Cole about one year before diagnosis. It was the only voice memo she ever made on the phone and it's so perfect it's eerie. I cry every single time I hear it. I've been sharing it with everyone who knew or loved Katie. You can Katie singing "Smile" listen to it here. I miss her so much. The world is not a fair place. Not fair at all. We'll have a "Memorial/Celebration" for Katie on March 16th at 1:30pm at the Community Church of NY Unitarian Universalist, 40 East 35th St. NYC. All are welcome to come celebrate the life of my Katie. | | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Damien,
I am so sorry to hear the news about Katie. It must be the toughest times for you and your family. She was a true warrior and fought hard but was not able to beat the beast. Each new day will be the tiniest bit more endurable and one day you all will see the sun shine again with only happy thoughts about the time you had with her. Bless you. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 | Damien,
I am so sorry you have lost your beloved Katie. Please believe me when I tell you my heart weeps for you. Each time we lose a member here it rips my heart out. I know you must still be in shock as well as experiencing pain that I'm sure I can't even comprehend.
May all the days of your life be filled with joyous memories. May your pain be a little more tolerable each and every day. Bless you. May His love sustain you. May His grace be sufficient for you, ow and forever. I pray for comfort and peace for you and your family.
I hate this disease.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | I'm so very sorry to hear this news. So tragic.
Take care Damien.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Damien, I am so sorry! Please accept my deepest condolences.
In time, I hope you can find some comfort in your memories of the happier times you shared together. Katie was such a wonderful person, she will be greatly missed by so many.
May Katie rest in peace.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Damien. I'm very sorry to hear this, and my condolences to you and your family.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Damien,
I am so very sorry to hear this. Katie was way too young to have been taken by this horrible disease.
I saw the post you made on Facebook and read all the wonderful comments made by her friends and family. She sounded like a great friend and a wonderful wife and mother. I know it is hard on you, but do continue to share the the pictures and videos of Katie with your children. Also, make a copy of all the comments people made about Katie to share with your children as they grow older.
Our family suffered a similar tragedy when my 32 year old niece died suddenly a few years ago leaving two young children. At her memorial service we asked everyone to write something about her which was put in a memory book for her children. Perhaps ask them to share some pictures also.
My deepest condolences to you and your family during this time of unspeakable sorrow and loss.
RIP Kathie!
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Damien,
I am so sorry to hear about Katie. Just the few posts I read of hers made it clear what a wonderful, humorous, kind person she was. I wish you and your children the strength to continue on--and you clearly will.
Sending my deepest sympathy,
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Damien - So sorry to hear about Katie. Keep your little ones close as you comfort each other in the days ahead. Children have a way of softening the sadness and bringing a smile to help when you need it most. Condolences to you and all your family.
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.)
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | Damien - I am so sorry to read this! I know too well what it is like. My daughter was only 14 months old when Ken died so she was too young to fully understand. I try to keep his memory alive as much as possible - that was his biggest fear that she wouldn't remember him. I look at her every day and see Ken in her and I am so thankful she is here and I know she is here for a reason just as your two kids are. If it weren't for her I wouldn't have gotten out of bed each day after Ken passed away. Start with getting through each minute of the day and work from there. Hold your kids extra tight and know that Katie is watching over all of you all the time.
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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