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Old 11-27-2008, 09:07 AM   #46
seaprincess
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I don't think that 2008 has been our year...prayers needed please

Hello everyone,

I wanted to start off by wishing everyone a Happy Thanksgiving. It has been a few weeks since I posted because my DH finished his second round of chemo and he has been tired and sleeping a lot. He amazes me how well he tolerates all that he goes through and rarely complains except when he gets cold thanks to the blood thinners. I know that I should be so thankful for him being here, however due to his prognosis I am also very sad inside wondering is this our last Thanksgiving? I try not to think this way but it's hard when you see so many families/couples together and you realize how much you take "normalcy" for granted. Although what I say may sound depressing I am planning on making each moment with him count!!

As if this was not enough, my dear father has traveled overseas to Mumbai to attend a family wedding. When I was at work yesterday I read the news about the terrorist attacks in Mumbai and was panic-stricken for his safety. Because of the time difference, I had to wait until 9:00pm to make a phone call and imagine the relief I felt when I heard his voice after what seemed like hours. Sadly the situation in Mumbai is still not under control and they are confined to their home as they wait. I pray so much for my families safety and the only solace I have is that my family is all together in one home and can support each other. Right now I pray that they can contain the situation and help those in need. My father is not scheduled to fly home until the first weekend in December, all I want is for him to come home safely . Life is so full of trials and tribulations but gosh, why all in a span of three months??

Thanks to everyone for their continued support. Hope you all have a wonderful holiday.

Sincerely,
Lisa
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Old 11-28-2008, 11:20 PM   #47
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Happy to hear from you...

hey Lisa. I have been reading your posts and am amazed by your strength. I have been glued to the T.V. regarding the terrorist attack in India and can't believe you have to deal with that stress as well. I am praying for you , your hubby and your Dad. I too will be in Disney in December 18-20. A short trip and then down to Ft. Myers for my son's high school basketball tournament. We are dealing with my brother in law with cancer that started as oral and now is everywhere...I was with him yesterday and he was told by Sloan -Kettering in NYC to go home there is nothng else...He chose to keep fighting and is still taking the weekly chemo to try ...48 years old three kids.... I have been thinking alot about my faith and I really do beleive and you should try to as well if you can...that God does not give us more than we can handle. God Bless you , your hubby and Dad. When will you be in Disney?? Where are you staying??
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Old 11-29-2008, 11:00 PM   #48
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Hi Kelly B Disney, thank you so much for your kind thoughts and prayers for my husband and father. These last four months have been the hardest months I have ever had to endure. I try to keep the faith and strength, but sometimes falter. I know I have so much to be thankful for but sometimes can't help but to think of the what if's. Life is so unpredictable and I guess I am too much of a realist at times.

I am so sorry to hear about your brother in law. I hope and pray that chemo will continue to work for him. It is a shame that physicians just send people away with no hope. I think that sometimes the human element of medicine is lost and there is no regard for the patient's spirit with a terminal illness. We do not have children and can only imagine what it must be like for his dear wife. Please give my best to both of them and tell them to keep the faith. I keep telling myself that God performs miracles everyday.

I know people may think we are crazy but we are trying to live everyday as we always have. We made the commitment to live, "day by day". Sure deep down my DH is scared, however he says he has too many good things to live for. I feed off his amazing strength. I celebrated a beautiful Thanksgiving with him and my birthday was the day after. The best gift U could have ever received was having him home with me. I will forever be grateful to God for giving me this chance.

I can not wait to take Ben to Disney next month. He will have finished his third round of chemo two weeks prior to us leaving. We will be there from 12/14-12/21 and are splitting our stay at the Boardwalk Inn and the Animal Kingdom Lodge. Where are you staying? Perhaps we might be staying at the same resort?

I hope that you and your family had a wonderful Thanksgiving holiday. This board means so much to me and your words mean a lot. God Bless you.

Lisa
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Old 12-02-2008, 12:26 PM   #49
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Lisa,

I just read this entire thread. My prayers are with you and BEN!!!! Please enjoy your vacation and living each day to their fullest. I hope my story will give you more hope.Hope is there and Miracles do happen!!

My father has/had brain cancer. 6 years ago he had a seizure and was diagnosed with a stage 4 astrocytoma(sp?) in his left frotnal lobe. I was with him in the hospital when we was diagnosed.The tumor was inoperable(sp?) He went through radiation treatments followed by chemo.He lost his hair and it never came back but it does not matter.
His health really started to take a turn for the worst and his oncologist gave him 90 days to live. This was devastating. My father was 55.They gave him a choice to operate or not. He was told you will die from the cancer or you could die from the surgery. He elected to operate on the inoperable tumor. The surgery was a success, he has some tumor left and it has not grown. He has a lot of trouble with scar tissue though. Yes, he has changed alot ,his appearance, he has problems with his limbs,memory and attitude at times because of the location but it is a miracle he is with us today!!In some ways he is a better man than he was before and in other ways you can tell by looking at him how hard this has been for him.If I can figure out how to add a photo to my post I will.Every time he has a new scan the doctors proclaim a miracle and admit they do not know why he is still with us.My father put his life in the hands of the lord and prayer.

He has gone with us to WDW and drove his scotter and cried being with his grandchildren, went with us on a DCL vacation 2 years ago. He has flown to see me at least once a year and I go home to see him. My stepmother drove him here for a weekend to see my son play football.They take small weekend trips. (My stepmother still works full time)These give my father something to live for and to look forward to.

You and Ben have a lot to look forward to!! My prayers will be with you. This was a hard story to type and I hope it comes across the way it should.

Please update this thread when you have time.
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Old 12-02-2008, 09:07 PM   #50
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Dear Torismom,

Thank you so much for sharing your story with me. It gives me so much hope and I keep praying for miracles each and everyday. It is so difficult to write this story and with all the twists and turns it helps to put your feelings on paper. Your father is a true inspiration and I pray that he continues to improve and enjoy life. I totally understand about the changes you speak of with you Dad. Ben's physical appearance has changed, hair and weight loss, his personality is sweet as ever, I only wish he did not suffer with expressive aphasia so we could communicate the way we used to. We have found new ways to find his words and it makes me love him even more. It is really been a transition but we are adapting well.

My DH and I are celebrating our 13 year wedding anniversary today !! I feel so thankful for sharing yet another year with my soulmate. We spent most of the day in the hospital and when we finally escaped we dined at our favorite steakhouse. I know I have so much to be thankful for but as I sat there I thought, please God let us be here again together next year.

Ben will be starting this next 28 day cycle of chemotherapy this evening. I am so hopeful as his physicians told us today that they will do another MRI on December 30th. They are hoping for some shrinkage and so am I. In the meantime, I am going to give Ben one incredible vacation. I am trying so hard to get things organized for our trip on December 13th. I am praying for pixie dust of good health for Ben and I on our vacation.

I will continue to update as soon as I receive more news. Thank you so much for your thoughts and prayers. Please have a wonderful evening!!

Lisa
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Old 12-02-2008, 09:07 PM   #51
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Dear Torismom,

Thank you so much for sharing your story with me. It gives me so much hope and I keep praying for miracles each and everyday. It is so difficult to write this story and with all the twists and turns it helps to put your feelings on paper. Your father is a true inspiration and I pray that he continues to improve and enjoy life. I totally understand about the changes you speak of with you Dad. Ben's physical appearance has changed, hair and weight loss, his personality is sweet as ever, I only wish he did not suffer with expressive aphasia so we could communicate the way we used to. We have found new ways to find his words and it makes me love him even more. It is really been a transition but we are adapting well.

My DH and I are celebrating our 13 year wedding anniversary today !! I feel so thankful for sharing yet another year with my soulmate. We spent most of the day in the hospital and when we finally escaped we dined at our favorite steakhouse. I know I have so much to be thankful for but as I sat there I thought, please God let us be here again together next year.

Ben will be starting this next 28 day cycle of chemotherapy this evening. I am so hopeful as his physicians told us today that they will do another MRI on December 30th. They are hoping for some shrinkage and so am I. In the meantime, I am going to give Ben one incredible vacation. I am trying so hard to get things organized for our trip on December 13th. I am praying for pixie dust of good health for Ben and I on our vacation.

I will continue to update as soon as I receive more news. Thank you so much for your thoughts and prayers. Please have a wonderful evening!!

Lisa
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Old 12-13-2008, 12:11 PM   #52
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Dear Lisa,

I just wanted to let you know that my thoughts are with you and your husband. I hope that these days you are both doing as well as you can.

We'll also be down at Disney the 17th to the 22nd. We were going to stay at AKL, but am switching to the BWI. I love the festive feel there in the evenings, just people watching and the entertainers. I hope you can both enjoy that as well! I hope he's feeling well enough to enjoy some good food and the atmosphere.

I think it's great for you to plan this for him. Did you decide to fly? I bet the airlines will do their best to keep him comfortable on the flights.

My sister is a quadrapalegic, and completely a total care case. She's been like that for almost 40 years, since she was 9, and my mom has flown with her several times. They really help with transporting her and keeping her comfortable on planes (she's getting on in age, so for her she probably won't fly anymore) but I just wanted to let you know, if you do fly, I hope they are very helpful for you.

Hope you have a wonderful, peaceful holiday, filled with laughter instead of worries.

Amy
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Old 12-16-2008, 08:39 AM   #53
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Lisa - I just read the thread and wanted to offer up my prayers to you and Ben also...you're at WDW now and hopefully having a fantastic vacation! I hope your travels went smoothly as well. My heart really goes out to you and your husband. I cannot imagine what it must be like to walk in your shoes. I have lost both of my parents to cancer but not my spouse, and I was not the caregiver. You are a very strong and positive person and I really admire your spirit. Please fill us in on your vacation details when you return.

Torismom - what an inspiration your Dad is as well. And such wonderful news he has beat the odds. Do post a picture of him if you ever get the chance.

Happy Holidays to everyone, especially anyone who has been touched by this awful disease.
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Old 12-18-2008, 03:26 PM   #54
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Just found this forum.

My prayers are with you Seaprincess, as well as your husband and family.

My wife was diagnosed with a brain tumor on 10/24/08, Biposy was done on Dec 2nd and we have no word yet.
We were supposed to meet with the surgeon last Thursday but it had to be sent out to the Mayo for further testing.
She turned 42 on Dec 2nd.
We're hoping and praying that this will be her best birthday present ever.

In the intrerim, I threw a "diversion" trip to WDW on top of everything else. Trying to keep the childrens minds elsewhere, hoping Pixie dust and magic will happen, we had no intentions of going for another year or so.....

One day at a time!
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Old 12-18-2008, 04:15 PM   #55
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My continued thoughts and prayers to you and your family. And hope that you had a wonderful and much deserved time in WDW.
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Old 12-18-2008, 04:16 PM   #56
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Mickee...also hope things work out for you and your wife. I know how hard it is to wait. You and your family will be in my thoughts and prayers also.
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Old 12-19-2008, 10:25 AM   #57
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seaprincess

I pray each day for you , and hope things will get better. I know excatly what you are going through. God Bless !
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Old 02-07-2009, 11:34 AM   #58
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Quote:
Originally Posted by Mackey Mouse View Post
Lisa.....good for you.. you two go and have the best time. We will be going ourselves first week in December......on a chemo holiday, and Tom will do the best he can and we will too....our grown up children are going to....they grew up with WDW and want to be there with their Dad..
I was diagnosed with the same cancer in october I jufinished chemo and radiation in January and booked a Disney trip , we just got back and had a great time!!!!!You should go!!!
The tumor is on the right side of my brain so I lost use of my left side.I go back next week for a new mri, wish me luck!!!!by the way I am39 also

Good luck to you and your husband!!!!

Last edited by isyt; 02-07-2009 at 12:43 PM.
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Old 02-07-2009, 05:39 PM   #59
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Quote:
Originally Posted by isyt View Post
I was diagnosed with the same cancer in october I jufinished chemo and radiation in January and booked a Disney trip , we just got back and had a great time!!!!!You should go!!!
The tumor is on the right side of my brain so I lost use of my left side.I go back next week for a new mri, wish me luck!!!!by the way I am39 also

Good luck to you and your husband!!!!
Blessings to you isyt. Sending lots of thoughts and good wishes and prayers for your MRI.
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Old 04-13-2009, 12:13 AM   #60
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I am sorry it has been a while since my last update; life has been difficult. My DH and I have been through many challanges over the past several months and each time, he fights back and amazes me. The last time I wrote about him we were on our way to Walt Disney World in December and had an amazing vacation of a lifetime. I can only say that I know understand why they call Disney the most Magical Place on Earth. We truly had the equivalent of a "Make A Wish" trip for adults, courtesy of some of the most amazing Cast Members I have ever met. We will cherish that memory forever.

2009 has not been so kind to my husband. His battle with brain cancer has been so stressful. His MRI in February showed the tumor had not only grown but has now scattered additional tumors to the Occipital Lobe. He was on Temedor, oral chemo, until Febraury and his Oncologists changed their treatment to a combination of Avastin and CPT-11, chemo-infusion that would seem to have more promising results. With great expectations, my husband endured three treatments over a month's time. We were so hopeful for good news that the tumor(s) would either shrink or at least stay the same. This past Monday my husband had his MRI. We were to learn of the results on Tuesday and nothing could have prepared me for the answer we received. Not only did the chemo not work, the new tumor in the Occipital lobe grew from 1x1cm to 2x2.3cm. So even with the best of conditions, the tumor was resistent. Further, we were now told that they had no more protocols that would benefit my DH's tumor so "quality of life" with Hospice was introduced or the option to go back to DUKE to see if any additional protocols will benefit him and to get a second opinion.

We were so devistated. I guess I always thought we would not be out of options. Because Ben is young and healthy, we all decided that we were not ready to give up and made an appointment at Duke. I told myself I was not going to be too excited because I did not want to get my hopes up. After the appointment, I don't think I have ever cried so much. I only pray to God he will not suffer. We went to bed on Thursday so indifferent and confused.

Friday morning promised to be a better day as I was off for the Easter holiday. What started out as a good morning changed in minutes. My DH woke up and in an instant, I knew something was terribly wrong. He cupped his hand over his left eye and complained of a terrible headache, a 7 out of 10, he said. Within minutes, his speech became garbled and I called the hospital. This was the first Neurological set-back we have encountered since he became ill in July. Being that it's Easter both Doctors are on vacation. I was told by the Oncologist on call to bring him to the ER immediately. I don't think I have ever gotten ready so quickly as we were out the door within 10 minutes. What normally takes 15 minutes to drive felt like an eternity and I kept asking Ben if he was ok. He kept holding his head in pain. We were immediately taken back to a room and they gathered information from me and got a Cat-Scan of Ben's brain. The results were back so quickly and the Neurologists confirmed that he bled into the new tumor in the back of the brain. Although contained within the tumor, the swelling began, blood pressure increased and he was unable to make sense of anything. We were told that the Coumadin he was taking over the last six months caused the bleed and a plasma tranfusion was necessary to reverse the effects of the blood thinner. The trasfusion was successful and after two days, the bleeding has seemed to stop along with the help of steriods for adema around the tumor. Today he seemed more like himself, but I can not help to think what will happen the next time especially with this tumor growing so quickly. Although I should be happy they may discharge his tomorrow, I am so scared to bring him home for fear of what may happen next. We have the standing appointment with Duke, but if they can not help, we are left with Hospice as our only choice.

I am so saddened by all of this. For the first time, I feel life is getting the best of my DH and myself. We have been on an 8 month journey that seems so long but yet so short. Sadly, statistics seem to dictate the lifespan of gliobastoma patients as they generally give them between 6 months to 1.5 years. I was so hoping my DH would not be a "statistic". I have always heard that patients with a terminal illness come to grips with their illness. On Thursday we ironically had "the talk" that no one ever wants to have about life, his final wishes etc. It was truly the most difficult conversation we have ever had. At the end of the talk, he told me that he was at peace with himself and life and has lived forty wonderful years. I admire him so very much, but it is so painful at the same time.

No one ever wants to lose their spouse, yes we have truly had a gift of 8 beautiful months to spend together when I was not sure if he would initially recover from his surgery in July. He has fought so hard, never complained and is greatful for everything in his life. I only wish I was as strong. Although he is here with me now, I feel so alone in some way and it makes me sad.

Please, if you have a moment, we could surely use some prayers. I am not sure what is in store for my DH but I pray that God will take care of him. He is so gentle and kind, it is such a shame that a disease can be this cruel. I will definitely keep this post updated after our consultation with Duke.

God Bless you all and thank you for letting me share my story~it helps to get it out of my head and to share with others. ~Lisa
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