My husband's journey with brain cancer...update

[wuv tigger]

This is a quote from their website:

"Dear Friends of Fairygodmother Foundation:

I am writing with regret to inform you that after ten years of granting end of life wishes for terminally ill adults, the Fairygodmother Foundation will be closing its doors effective October 31, 2008.

As you know, this has been a very difficult year for the American economy which has created tremendous challenges for nonprofit organizations. Like many other organizations, Fairygodmother Foundation experienced a number of financial challenges over the last year that unfortunately we are unable to overcome. Therefore, the Board of Directors of Fairygodmother Foundation made the difficult decision at a recent meeting to dissolve the corporation.

We are extremely proud of what has been accomplished. Over 1,000 wishes have been granted in all 50 states, providing our wish recipients the opportunity to bring closure and quality to the end of their lives. We greatly appreciate your support; we could not have done this without you. So many lives have been touched over the last 10 years, and special memories created for the loving family members of our wish recipients to cherish for years to come.

On behalf of the Staff and the entire Board of Directors of Fairygodmother Foundation, thank you for all that you have contributed over the years to help us fulfill our mission. We could not have done it without you.

With deep gratitude,

Gerald Cholewa
Chairman, Board of Directors"

hug to your dh & you!

 

[seaprincess]

Good evening and thank you so much for the information about the Adult Make a Wish Organizations. It is such a shame that the economy has forced the Fairy Godmother Program to close its doors. It sounds as if they have made many people's wishes come true over the years.

I have been very busy taking care of my DH and am still struggling to get everything done on a weekly basis. We used to pride ourselves on staying on top of things and now I feel like there are not enough hours in the day for one person to fulfill the endless "to do list". I looked in the mirror this morning and realized how "tired" I look. I knew I felt this way on the inside, but it is now starting to show on the outside as well. I am not sure if there is any magic cream to make dark circles go away. I only wish I could sleep at night....too many things to worry about!! I know my DH is aware that I am struggling and am frustrated, I just wish we could communicate better. Expressive Aphasia is such an awful condition, I feel as if he is trapped inside his own mind. He tries so hard and I commend him, I just wish I could wave a magic wand and make him better again.

On a more positive note I am making good progress planning our December Disney surprise vacation. I made reservations at the Boardwalk Inn and even took advantage of the DIsney VISA offer for free dining...who would have ever thought you would see "free dining" in December? This will definitely come in handy. I have to give many KUDOS to the Special Needs Department at WDW. They called me an hour after making the ressie and helped me with arranging all necessary items for the room since they did not have a true "accessible" room available. That alone felt like "Pixie Dust" from above! I have been somewhat lucky making dining ressies so I think the rest will eventually fall in place. This trip will obviously be different depending on his stamina. It will be very crowded in the parks so close to Christmas so I did not go crazy booking too many activities. Normally we are in full go mode! I will certainly look into the Guest Services Disability Card. I truly think this will be helpful. I need to look into renting a scooter for my DH and have heard positive things about Walker Mobility Rental. Has anyone had any experience with this company?

I feel very blessed to have found this forum as it is nice to share my thoughts with you. Thanks for caring so much!

With Much Gratitude,

Lisa

 

[Mackey Mouse]

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..

 

[seaprincess]

Dear Mackey Mouse,

I am glad that you all are going to WDW as well. It is a shame that we will miss each other. We originally were going to be on DCL's Western Carribean Cruise at the end of November and staying at WDW for three days afterwards. Unfortunately, Ben will be on chemo again at the beginning of November and because this is such a new experience for us (traveling that is) I felt uncertain about taking him out of the country in case an emergency would arise. My hope is that if he becomes stable enough, the doctor might ok him to travel on a cruise and perhaps we might be able to steal away to the Bahamas with DCL.

I truly hope you all have a Magical vacation and I think it is wonderful that your children will be there to celebrate with the both of you. The holidays are so magical at WDW that even when someone is not feeling well, the spirit of the season makes you smile.

Have a wonderful day!

 

[Elfstar]

I hope you both have wonderful trips, seaprincess and Mackey Mouse. We're going next week, just for a few days because Jim wants to see it one more time. I'm doing my best to see that he has a wonderful trip. We're wishing you love, luck and pixie dust! And saying prayers for us all!

 

[old lady]

I will.

 

[BelleBeast]

To Elfster,

I see that your DH is suffering from ALS - My dear friend had this terrible disease and I took care of him, if you need to talk, I am here!

Louise

 

[karendvc07]

Seaprincess, I am so very sorry to hear about your husband. Mine was diagnosed with colon cancer at the age of 38. He battled this horrible disease for 2 years, but sadly, never recovered. I know what you are going through....I can only tell you to cherish every minute you get to spend with your husband. I hope you are able to make some fantastic memories at WDW.

Since my husband's passing, I've taken our 2 boys on a Disney trip every year. It has become our "tradition" and I tell them that their Dad would be so happy that we are able to have some fun--just the three of us!

I wish you all the best, and pray that God gives you comfort and strength. We are sending you love & hugs from Illinois....

 

[seaprincess]

Hi karendvc07,

Thank you for your kind words. I am so sorry to hear of your husband's passing after battling cancer. It just does not seem fair that so many people are suffering from the horrible disease. I only hope that they will some day find a cure for cancer. I guess I kept thinking I was the only one with a husband that is fairly young and going through this ordeal. It is so comforting to share my story on this board and to receive such warm support makes me keep the faith.

I think it is wonderful that you take your boys to WDW every year. I think you are right to tell them how happy their Dad would be as I am certain he is smiling down upon you all as you dedicate your life to raising your boys and taking care of your family. My biggest regret is not having children. I can not imagine what life will be like if something happens to him and I think how wonderful it would have been to have a child (children) to carry on his legacy. I will always cherish our memories and hope that we can continue to spend as much time together as God grants us.

Thank you for taking the time to share your story with me and for your thoughts and prayers. I am finding myself coming to this forum several times daily just for comfort. Right now it is a positive and much needed outlet for my mind to keep it focused.

Have a wonderful evening.

 

[Mackey Mouse]

Hugs to all here.. those of us battling with our loved one.. remember as a caretaker, you need a break every so often..

My break yesterday was to go shopping with my youngest daughter for her wedding gown....we found it, she was beautiful in it. The wedding is early summer.. and we are praying that DH will be relatively strong for it.

Our trip to WDW in Dec is the shot in the arm he needs.. and if we need to do it again and again, we will.... just taking our time, soaking in the magic, and enjoying the beautiful sunshine.. It is what makes the winter bearable for us in New England, those little breaks.

So SeaPrincess, go and enjoy, laugh, and just take your time and smell those roses.. KarenDVC07.. hugs to you too. so young, way too young to go away from you and your children...have a wonderful trip in his memory..

 

[nannerbadnanner]

Prayers said for you and your husband.

 

[seaprincess]

Hello there, we are just back from a short weekend at Myrtle Beach before my DH goes back to see the Oncologist/MRI etc. on Tuesday. I thought it might be nice to get away before the second round of chemo begins. I honestly had such a difficult time relaxing this weekend. All I could think about is what will the MRI show, has the tumor gotten larger, stayed the same, shrunk? What next with his Chemo, handling his Expressive Aphasia--which is good some days and not so good the next. Couple this with setting up COBRA, life insurance, insurance, hospital bills etc...I feel so darn overwhelmed I feel like my head is spinning around. I know people tell you to take care of yourself too, but seriously how?

It made me so happy to see him smile and take everything in, almost looking at life through the eyes of a child. Sometimes I do feel like a Mom instead of a wife because cognitively he is left with very poor short term memory and retention. I saw other couples walking, talking, hugging and myself wishing that life would go back to the way it was three months ago. I know that will never happen, I should just make the best of it. I keep telling myself that God will never give me anything I can not handle. I am still trying to become a "believer" I guess.

It is amazing to me how people treated us so differently. The stares at his scar, the men more so than the women. I guess they try to picture themselves in that position and get the deer in headlights stare. I actually booked two tickets to see Larry the Cable Guy, I still can't believe I did that
. He was very funny and one lesson I learned is that although he made fun of everyone, an equal opportunity offender, as I called him. I learned that it is ok to laugh. I just wish I can continue to smile at life in the months to come.

Please wish us luck on Tuesday. I pray for good news but have to be ready for what is to come. Thanks for taking the time to read this.

Have a good evening!!

Lisa

 

[safetymom]

You have a wonderful attitude. I will keep you both in my prayers.

 

[karen l]

Lisa, I'm glad you were able to get away together. I hope & pray Tuesday goes well. I know how difficult this whole experience is for you. Keeping you both in my prayers.

 

[Mackey Mouse]

Lisa.. hang in there, we scan tomorrow... results on Wednesday.. just know you are not alone in what you are going through.. I dread having to start chemo again...

 

[ScrapperBelle]

I am so sorry. I will be praying for you all.

My sister was recently diagnosed with breast cancer. She is only 36 and has 2 young boys. So, in a way, I know where you are coming from. It's a terrible place to be in.

I will be hoping and praying for the best for you all.

 

[seaprincess]

Thank you all so much for listening and offering you well wishes to us. I find myself coming to this forum so much lately as it gives me a place to be heard but not judged. I feel so alone sometimes and when I am here, I am able to reach out and find solace.

Mackey Mouse best of luck with the scan tomorrow and I will be praying for good results. It seems that we will be hearing results a day apart. Let's pray for the best!

Safetymom and karen, thanks for the kind words, they mean so much!!

ScrapperBelle, thank you for sharing your story, I hope and pray that your sister will do well with treatment and will feel better. It is nice to share our experiences, it helps us cope.

God Bless you all!!

Lisa

 

[kimis]

You are in my prayers. Remember it is one day and sometimes one moment at a time.

 

[Tinker'n'Fun]

Prayers and . You are in my thoughts today.

 

[Jenvenza]

You and your DH are in my thoughts. Good luck tomorrow.