SEMI-LIVE 5 weeks of onsite/offsite dining adventures Jan-Feb ‘23 *7/9 FINAL Update*

[Nohal]

How wonderful to be able to spend that much time in Disney. Thank you for taking the time to post your extensive report. I really enjoyed your report as it was so informative .

 

[elaine amj]

It really was so incredibly wonderful to spend all winter in WDW.

I did not update with reviews from our mid-March trip as it was super busy being there with our friends. Suffice it to say - DH ate so.much.food and the 4 of us even tackled the Kitchen Sink and won!





Ok ok - I couldn’t resist adding a couple of photos once I started typing lol!

Unfortunately we came home to the news that the cancer had spread to his brain stem (which was what was causing al the physical difficulties we were experiencing all winter).

He went into a marked decline after our return.

2 weeks later he was no longer able to talk and had great difficulties walking.

3 weeks later, he could not walk or even stand as he no longer had use of his right arm or leg (so wheelchair-bound). A few days after that, he couldn’t eat or drink anymore (cannot swallow). I did give him a taste of chocolate cake one night to roll around on his tongue as he still has his tastebuds

5 weeks later, we just got a feeding tube put in today.

God has given us both a peace that passes all understanding and we are just cherishing everything moment by moment.

He is still fighting and we are trying chemo again. We are learning sign language so he can communicate with his one hand.

I was surprised to discover that when I look at him, I don’t see the extensive disabilities. I simply see my DH. All the other things are just annoying problems that yes, are sometimes frustrating, but still are just problems to solve/deal with.

And the way I see it, we are a team. He’s not simply someone I provide care for. Every problem he has is what I have too and we deal with it together.

We still laugh often and talk cheerfully together. Instead of the other way around, I feel the need to comfort family and friends who tell me they are so sad or have trouble sleeping thinking of him. Yes, I have trouble sleeping. And yes I take a deep breath sometimes when I think of the enormity of the problems we are facing. But overall, I feel at peace and mostly focus on loving him (and fussing over him until he tells me to go away and rest lol).

He’s been in the hospital for the past week (nothing major) and I soon took over a chunk of the bed



We are both so happy we went to WDW when we did and have all those amazing memories to treasure.

We are now planning a cottage trip about 6 hrs away in a week or so (if all goes well) as he still wants to keep travelling. (We just spent a weekend at a cottage an hour away with his siblings 2 weeks ago lol)

Thanks for following along with our Disney snowbirding adventures! I’m thrilled I took the time to capture all these memories.

 

[erinch]

Thank you so much for your reports. May all be Luminous in the Light.

 

[ThreeBoyMama]

Your DH has some incredible energy, as do you. Your positive attitude is amazing. Wishing you both all the best and thank you for sharing your wonderful memories with us. Peace and light to you both.

 

[princesserin1350]

It has been such a joy to read your reports. You and your DH are such an inspiration. I have shared many parts of your story with my husband, and it has been a beautiful reminder to cherish and truly live in every moment we have on this earth, especially with those we love. I really hope all goes well so you can go on your upcoming cottage trip and continue to travel and make memories together as long as you possibly can. Much love to you and DH, and thank you for taking the time to share these memories with us!

 

[elaine amj]

Thank you so much for your reports. May all be Luminous in the Light.

Thank you for sharing my adventure!

Your DH has some incredible energy, as do you. Your positive attitude is amazing. Wishing you both all the best and thank you for sharing your wonderful memories with us. Peace and light to you both.

We’re both just kinda crazy and we like it that way Thanks for being here.

It has been such a joy to read your reports. You and your DH are such an inspiration. I have shared many parts of your story with my husband, and it has been a beautiful reminder to cherish and truly live in every moment we have on this earth, especially with those we love. I really hope all goes well so you can go on your upcoming cottage trip and continue to travel and make memories together as long as you possibly can. Much love to you and DH, and thank you for taking the time to share these memories with us!

This touched my heart.

One thing I have learned is that it is a far easier thing to say than to do. We’ve been battling cancer for 7 years now and I always had this romantic idea of “live like you’re dying”. Reality was far grittier and we spent way too much time just sitting around waiting for the other shoe to drop. Or fighting endlessly over stupid things.

This long trip together really gave us an extended stretch of time to focus on nothing but each other. And that time of refreshing really is giving us the foundation tackle all that lays ahead.

 

[olliesmom]

Sending love and light to you and your husband. I hope you are able to make it to the cottage together, both his (and your) grit is remarkable. We just got back from our trip yesterday, and with an (almost) two and five year old, we had all the usual moments where the frustrations of high expectations begin to cloud the magic. I actually thought of you and your husband many times, and your ability to find the positive amid really hard circumstances. You have given me a new appreciation for the ability to just be together and enjoy the moment.

I wish you both strength and many more memories together. I hope you know that sharing your words and stories here has made a real impact on this community. You will both be in my prayers!

 

[Ellester]

I so enjoyed reading about your snowbirding/dining adventures! I appreciate your honesty about the ups and downs of dealing with your husband’s cancer. My husband was diagnosed just over a year ago with a rare chronic blood cancer and it has been an up and down year. I can totally relate to your “waiting for the other shoe to drop” comment. I definitely feel like that often. We are also trying to just appreciate each day/week/month. He has only a few odd symptoms now and hopefully we will have many more years together but I am not enjoying the feeling of mortality that a cancer diagnosis brings. Thank you for sharing!

 

[elaine amj]

I so enjoyed reading about your snowbirding/dining adventures! I appreciate your honesty about the ups and downs of dealing with your husband’s cancer. My husband was diagnosed just over a year ago with a rare chronic blood cancer and it has been an up and down year. I can totally relate to your “waiting for the other shoe to drop” comment. I definitely feel like that often. We are also trying to just appreciate each day/week/month. He has only a few odd symptoms now and hopefully we will have many more years together but I am not enjoying the feeling of mortality that a cancer diagnosis brings. Thank you for sharing!

So sorry to hear about your husband’s blood cancer. I’d advise you to take the trips and do the things. And yet, try not to live each day with the prognosis hanging over your heads. Go out and just live.

DH is now on home hospice (well he starts Monday) and we are now being given a support worker to watch over him every single night along with visits 2x a day from support workers for personal care. Oh and a daily nurse visit. Along with various other professionals and regular home visits from a hospice doctor, it’s Grand Central Station around here He is in a bed/wheelchair and can’t see, talk, stand.

And yet we are doing everything we can while we can. Hosted an impromptu backyard party for 40+ ppl a couple of weeks ago, we go to see musicals, we hit up local festivals.

There is still sooo much I want to do together with him.

And now I am dreaming of possibly going back to Disney in early August. Still very much a vague dream. But just discovered we can rent hospital beds and have them put into Disney hotel rooms. Wow. That’s a game changer.

Just have to get him stable enough to handle 1-2 weeks without medical care. Right now we are battling a major eye infection AND a urinary tract infection as well as very low blood pressure.

Thankfully the feeding tube is going great.

We joke that he ate soooo much in our winter at Disney that it’s no wonder he didn’t feel hungry when he got basically no food in the 2 long weeks until we finally got the feeding tube inserted. Like a hibernating bear

 

[tigerlilly]

Hello Elaine... I so enjoyed reading all of your dining reports and told my husband about each of them as you and your dear husband were living the bucket list Disney dream.

You are genuinely an inspiration of hope and positivity. You and your husband have a beautiful love story. I hope you get that dream of an August trip! Some food and wine action...complete the year of festivals

One does not expect to tear up when coming to a Disney site to read dining reviews. Thank you for sharing.

Love to you and your husband

 

[maiziezoe]

I just finished reading your dining reviews (it took me a week or so as I like to read while I eat lunch or dinner). I enjoyed reading about every single meal and looking at your pictures. Thank you so much for sharing your trip with your DH with us.

You are both in my daily thoughts. BIG HUGS.

 

[erinch]

Hello Elaine, have been thinking of you and wondering how life is.

 

[elaine amj]

Hello Elaine... I so enjoyed reading all of your dining reports and told my husband about each of them as you and your dear husband were living the bucket list Disney dream.

You are genuinely an inspiration of hope and positivity. You and your husband have a beautiful love story. I hope you get that dream of an August trip! Some food and wine action...complete the year of festivals

One does not expect to tear up when coming to a Disney site to read dining reviews. Thank you for sharing.

Love to you and your husband

Awww…thank you. I don’t think I ever dreamed my lengthy chatter about Disney food could ever have made such an impact.

I just finished reading your dining reviews (it took me a week or so as I like to read while I eat lunch or dinner). I enjoyed reading about every single meal and looking at your pictures. Thank you so much for sharing your trip with your DH with us.

You are both in my daily thoughts. BIG HUGS.

I appreciate this so much.

 

[elaine amj]

Hello Elaine, have been thinking of you and wondering how life is.

I have not been on the Dis since my last update. Our lives have been in a constant swirl of fun activities and medical appointments, some in cities a 8hr roundtrip away. We kept making lemonade and did the tourist thing every time we went to make the trips something to look forward to instead of dread.

Unfortunately I have some very sad news to share. On Thursday, July 7, my husband passed peacefully with DD22 and DS20 and I surrounding him.

Despite everything, it felt very sudden. Earlier this year, our oncologist told us he had months to a year. I really thought we would have at least a few weeks when the end was imminent.

On Tuesday he was his normal self after a busy weekend of attending parties with family friends. On Wednesday he had a mild headache. By Wednesday night, he was throwing up all night. By Thursday morning, he was not responding to any of my questions and I called an ambulance to take him to the hospital to figure out what was going on. Thursday night, a CT scan showed a massive brain bleed on both sides of the brain and metastasis to the brain. This was in addition to aspiration pneumonia and a blood clot in his lungs we found the week before.

DD22 and DS20 were with me when the doctor gave us the news. I knew at that point that further treatment was useless. Way too much all at once.

Still, we thought we would have a few days. And initially made plans for the kids and I to take shifts through the night so we could each get some sleep.

A couple of hours later another doctor came by and again mentioned that he could go overnight or in a few days. He rather minimized it but I was paying close attention and after he said overnight twice I realized it really could happen.

So I decided to stay overnight with him. He continued to be unresponsive to us. They sat us up in a private room (even though our insurance only covers a semi-private room), provided us with comfy chairs, and the nurses had a slew of medications to keep him comfortable. I made sure each child and I had private time with him to say what we wanted to say.

At midnight, I could hear his breathing getting alarmingly strained. And told the kids that it was now looking very possible that it would happen in the night. He was occasionally in pain and sometimes struggled to breathe (hard to watch) so I asked them gently to decide for themselves if they wished to stay for the end or to go home. Either would be fine based on their personal preference. I warned them it could get ugly. They chose to stay.

Before 4am, I was cuddling in the bed with him when I got restless. Soon after, his breathing pattern changed as it slowed dramatically. I started shaking him to get him to take his next breath. At this point, I knew it was close but wanted him to hang on one more day.

I alerted the kids and we all gathered close to love on him as soon after, he drew his final breath. The end was remarkably peaceful.

DS, DD and I just sat quietly processing everything for about 10 mins before we called the nurse to let her know. And then we sat together for another half an hour before I started making the calls to the main people who would want to be woken up.

No one else but my children and I knew it could happen that night (we chose not to update people that evening because we didn’t want a rush to the hospital. We wanted it to be just us for that night and had planned for people to visit him in the morning). I am glad we did that as it was precious to have that quiet time with just our family. I even told my mother to go home even though she wanted to stay with us.

Now we are in a busy whirlwind of funeral planning. We are surrounded by so much love it is incredible. We were counting how many people may want to come and have been shocked by the numbers.

I was so blessed to get to be the wife of an amazing man. And so blessed that we mostly had time to prepare and time to “live like you are dying”. This past winter in Disney was particularly precious and I am so, so, so glad we did it.

Some of his family were rather shocked at all the travel and worried I was pushing him too far when he needed to rest. So glad we didn’t listen and paced ourselves based on how DH himself felt. It was so worth it and I treasure every second (well, maybe not the ones were he was throwing a fit about his food).

We are now thinking of still doing that early August trip we talked about. It’s the one week this year that works with both kids’ schedules. So while it is maybe a bit soon, I’m in the mood to grasp what opportunities come our way. Plus we think it would be an incredible place to remember him and spend time together doing the things we all loved. On top of that, my brother is in the UK and had planned to visit us with his family in August. We could just meet in Florida instead. Then he doesn’t have to try to race down for the funeral which is in just one week.

What a life we had together. The best part is that kids and I are at peace. We did everything and wrung every drop of life out of his last days. We have no regrets and our hearts are just full of love. God has given us the kind of peace that passes all understanding.

 

[rhenkt]

Not much to say other than you’re a wonderful person and a true inspiration.

 

[dizneedoll]

Oh Im very sorry to hear this news. Thank you for sharing your journey with us. May your dear husband be at peace now and many blessings to you and your family.

 

[tigerlilly]

Thank you for the beautiful update and amazing tribute to your husband. I am so glad you did your trips this last winter. Your's is the kind of love story that most dream of. I am sure he would want for you all to go in August. I have a hunch he will be watching you.

Blessings. Again, thank you for sharing.

 

[Counting Stars]

Words fail me right now, thank you for sharing your journey with us. As Tigerlilly said, yours is a beautiful love story.
Very inspirational. Wishing you and yours peace and comfort.

 

[puppawuppa]

I'm so sorry for your loss. Thank you for sharing with us. I feel the love you have when I read your trip report. How lucky you are to be surrounded with so much love and support. You're in my prayers.
Kim

 

[mgmsmommy]

I'm so sorry for your loss. Thank you for sharing with us. I feel the love you have when I read your trip report. How lucky you are to be surrounded with so much love and support. You're in my prayers.
Kim

been just lurking and reading but wanted to say I am so sorry for your loss. Thank you for sharing your story. You have an amazing attitude that is so refreshing.