#43959 10-05-2004 05:46 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Dear AMK, I am like the others, speechless. I have a son this age, I cannot even begin to go there. Oh my, what can any of us say that will ease this heartache that you have. You are there to see this disease at it's worse. Damm I wish I knew why? HOW? What? I don't think anyone knows the answers to that. Because the disease isn't fitting our lifestyles at all. Most of us don't smoke or drink. Hell if I understand this.
..My God, My Jesus in heaven above. I come to you with a heavy heart and a soul that is torn. I beg you to help us fight this disease. Help us to understand and to go on with this precious life you have given us. Please lead someone in the right direction to find the cure for this horrible disease that is taking over it seems. Give us the knowledge or the power to fight this to it's very end. Please help those that are weak so they can have one strong day. Help those that are ill to have a day healthy. Help us to help others thru the dark times so that they can see a brighter tomorrow. Touch us Lord, Love us Jesus. For we love you, Amen. Always Miss Vicki | | |
#43960 10-06-2004 03:36 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Amen and amen. You are all in our prayers - Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#43961 10-07-2004 02:15 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | AMEN!!!! My heart and prayers go out to Kim and her family. Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#43962 10-07-2004 08:43 AM | 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 | AMK,
Just as everyone has expressed, I wish I could just wave a magic wand and life as it was would be restored to everyone thath as battled this horrific disease. Kim is so young just as Heather was. I look back on my life and I know how much life I squeezed in from Kim's age to now and I would gladly give some of that time to Kim. Words can not express how heavy my heart is for you, Kim and your entire family. I will pray for God's healing hands on your entire family and for Him to bless you with comfort and peace during these most difficult times.
God Bless,
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
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#43963 10-07-2004 10:42 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Amk, I am so sorry to hear of your sister Kim's problems. You and she will be in my prayers.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#43964 10-07-2004 11:43 PM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 30 | Kim met with her chemo doctor yesterday. He does not seem very positive, according to my parents. He can't give Kim a very strong dose of chemo because she has an infection and is on the antibiotics. He said it is a deadly combination. He wants to extend the chemo that she getting now from 6 weeks to 12-14 weeks. If her infection clears up, she can have a dosage of stronger chemo. He says that he is doubtful that this will work.
Kim is not eligible for experimental drugs or stem cell treatment right now because of the infection. I'm praying that this antibiotic clears it up, so she is given more options.
She had chemo yesterday and slept for the rest of the day and night. That's all she does anymore, which scares me a little. She used to get up, shower, watch tv, socialize with us, but not anymore. As this cancer spreads, I can see her hope fading (what little she had). I, however, refuse to believe that this is it. In my mind, as long as she still has an option, there is still hope. (Although I could be in denial).
Thanks for all of your prayers and thoughts.
God Bless
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
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#43965 10-08-2004 03:55 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Dear amk-
This is going to be a very difficult time for you and your family. What I suggest is that, hard as it can be, start getting some family pictures of happier times together and take them with you to the hospital. Spend some time with your sister going over your life together and share some good memories with her. Let her know how special those memories are for you. I for one never give up hope and do believe in miracles and I also know the value of humor and lighter moments. While she is awake, share these lighter moments and memories with her. Get her smiling again! It will be healing for you all. Love and prayers - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#43966 10-08-2004 06:28 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Dear Angie,
I agree with Kris. You need to share as many happy moments with Kim as you can. Sharing childhood memories will be good for the whole family. Much as I hate to be the doomsayer, I do see many parallels to Heather's case. Although every case is different and I would NEVER advocate giving up, I do believe that you must prepare yourselves for the possibility that there is nothing more the doctors can do.
Heather also battled an "infection" for several months. It was an infection, but it was also so much more. Antibiotics would work for awhile, but it would never totally be cleared up. And after awhile, she would develop an immunity and have to try a different antibiotic. The antibiotics themselves contributed to the overall problem. While they did help the infection somewhat, they played havoc on other bodily functions. It was a vicious circle and eventually nothing worked anymore. The infection seemed a precursor of what was to come. Her body was just no longer able to combat the cancer. It had simply grown too strong.
It is possible that the docs can get this infection under control. Do not give up hope!!! At the same time, I feel you will regret it later if you do not face the possibility that you may lose Kim to this dread disease sooner rather than later. You want to make sure you have made peace with the idea and have said your goodbyes. You want to let Kim know how special she is and how much you have enjoyed sharing your lives with her. Let her know that although you hate the thought of losing her, you know the decision to continue fighting must be hers.
There is only so much anguish a person can handle and only Kim can know her limit. By all means, encourage her to continue fighting. But when she has decided she has had all she can bear, you must be ready to abide by her wishes. The hospice nurse told me that many people try to hang on as long as they can to spare their family the grief of losing them. But in many cases, this only prolongs their suffering. You must let Kim know that you love her and will support any decision she makes.
I'm sorry that this is a depressing post, but from one who has been in this situation, I felt it necessary to tell you these things. I am sorry if I have caused you undue pain. And I truly do hope Kim gets her miracle, but you need to be prepared if she doesn't.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#43967 10-08-2004 08:29 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | AMK
My heart just breaks for your sister, you and your family. My dad had cancer his fight lasted 10 years, in the end he ask us to pray just that he wouldn't have to suffer long. After we saw his suffering we stopped praying for the cure,but that dad didn't suffer anymore. It hurts so bad to lose a loved one, but to see a loved one suffer for such a long time it becomes unbearable. I can not even begin to understand what you are going thru, it breaks my heart to hear of these young adults having to deal with this horrorible stuff, when they are just beginning their adult life. My prayers are with all of you. May God Bless You!!
JOAN
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