Update

[Carrie]

Dad’s 3rd Vidaza was supposed to start today but his counts are too low. He’s getting platelets today.

Neil, Roswell Park does manual counts so I feel okay with the tranfusions.

Dad’s feeling pretty sad today because his counts are so low and … with no treatment until MAYBE next week… it’s really rough on him. I feel pretty bad about it, too. His doctor’s superior over-ruled her decision to start the Vidaza today and she’s not in the hospital so we have to wait. She said last week that she thinks his counts are low BECAUSE she hasn’t treated him yet.

I had a breakdown in front of my future in-laws this weekend. We had an argument about some pre-wedding details/etiquette stuff and my fiance told them that we’re not thinking about all of the details because we’re more concerned about having my dad at the wedding. I couldn’t stop crying and I felt so sad. We want to start our future with together and I want dad to walk me down the aisle but there are no guarantees.

Has anyone else ever planned a wedding when they knew that a parent or other immediate family member may not be there?

Thanks for listening,
Carrie

[Sheryl Ann]

Hi Carrie,

My Mom was diagnoised with MDS over 2 years ago. I held off on my wedding plans b/c we did not think she would live very long given her diagnosis. She surprised us all by hanging on. We had a couple close calls. She seemed to be doing fine so we decided to plan our wedding. We are getting married this July and going to Hawaii for our honeymoon.
About 3 months ago her white blood count starting showing a elavated count but her hemo was not to concerned at the time. Last Friday, her white blood count had doubled! The doctor suspects she has progressed to Lukemia. We are having a BMB done next week to confirm this. Needless to say, I spent the weekend in tears and praying on how to lead my family through this difficult time.
I do totally understand what you are going through with planning a wedding and dealing with a parent that has MDS health issues. I did talk with my mom about her situation and she indicated no matter the outcome is–she wants me to go through with my wedding plans. I wish you the best of luck with everything.

Sheryl

[Carrie]

Sheryl,

I’m sad to know that someone else is in this position. I’m even sadder that your situation is even more stressful… with a wedding in a few months and possibly AML. I’m so sorry *HUGS*.

If you don’t mind, I’d like to ask you some questions?
Are you having your wedding near your mom’s home? We’re in preliminary planning and we’re leaning toward having it here (virginia) and hoping that my dad can ride from new york. I’m sure he can’t fly but maybe they can carpool? Did the MDS dictate some of the plans?
Are you assuming that your mom will be at the reception? Are you keeping the guest list small because of fear of infection?

Thank you in advance. It’s hard to find other people in our situation.
*hugs again*
Carrie

[Terri]

It sounds like you are both close to your parents. My Daughter got Married in Oct of 02 and Bob did not show signs of the disease until after but I think it was starting then , Finally dx in August of 03. He made it through the wedding a little fatigued and tired. Our first Grandchild was born this January, and even though he does not have as much energy as before Just seeing the baby Lights him up.

Bob would never have wanted our daughter to put off her wedding due to his illness, and the wedding was something He was able to look forward to just like the birth of our grandchild.

It is hard but your happy day will be a blessing for your parent. Nothing Makes a parent beam more then knowing their Child is happy.

I wish you both well and hope your have a very Happy wedding. Congratulations.

[KATHY1]

Carrie,

My brother got married July 2004 and mom passed away 3 months later. My mother was beaming no one could tell she was sick and as far as she was concerned she wasn’t. The last of her six children was now married and life was good. My brother had a great picture of her from the wedding made up for everyone, had them framed and gave them to us on Christmas. I look at the picture and talk to my mom every day.

I hope your dad is well enough to walk you down the aisle but if he’s not just knowing that his child is happy and settled will make him the happiest man in the world. Good luck to you.

Kathy

[Carrie]

Thank you all for the encouragement. I’ll try to go with the flow and just hope for the best that he’ll be able to be there.

*hugs to all*
Carrie

[mommachkate]

Carrie, Our son is getting married May 28th . We are praying that George will be able to be there. In January he became wheelchair bound and in February he was in the Moffitt cancer center for chemotheraphy the whole month. We were hoping that he will go at least in partial remission, but it didn,t happened. He is getting tx every other week, from now on maybe every week. I can tell you that I am petrified , and very sad that we have to prepare for this wonderfull occasion, while George life is hanging on a thin thread. He is asking me day by day, if I think that he will be able to make it. Lets pray together , that your Dad and my husband also will be able to be there on their children wedding. When is your wedding being planned? I wish you and your family all the best. Kate ( Sorry about the lots of mistake, my English is poor, and nobody home to ask for help.)

[Kathy G]

Carrie & Kate my prayers are with both of you – we will all lift up our hopes that your loved ones will be at the weddings.
Kate – I love reading your posts – your English is so good and you are able to express yourself so well in a language that is not native to you. My prayers are with you and your family – you are one tough lady and the family must be so proud of you and your strength.
Carrie – hang in there – try to enjoy as much as you can and know your Dad will be there one way or the other!

Kathy

[mommachkate]

Kathy, Such a great encouragment, real boost to my strenght. Thank you.When I am alone, I do fall apart. I hurry up and go on to read my friends post here and that helps me through those hard times.Best wishes for your Dad with the treatment. Kathy
Carrie , Just a thought. Would it be possible to plan your wedding really soon? We were trying to do that, but there was no possible way.Please try to enjoy the planning. Best wishes Kate

[Terri]

Hi Kate, I am sorry to hear George is not doing as well as hoped. However there is still Miracles. I believe that and have to pray for them every day with this disease. I think of you both so often.

To the Brides to be, Enjoy your day as much as possible, Your Parents will be beaming as nothing is more precious then seeing your children be happy. I speak from Experience !!!!!!

[Carrie]

Wow, I didn’t expect so many responses. Thank you.

We’re still discussing the date of the wedding. We don’t have a lot money right now (I just bought a house and he’s recovering from losing his job a few years ago). We also want to get married in the Catholic Church and he still has to have his confirmation. Then we have to do the engagement encounter. We’d elope but our families don’t want that and we’d really rather get married in the church.

I’m thinking we should just pick a date next year and just hope that dad will be there. It’s really hard on us, though.

Thank you all again!
Carrie

[mommachkate]

Carrie,
I think you are righ . One of my friend mentioned to me several times, why couldn.t they plan this wedding earlier? And I was thinking and telling her, that with this sickness you never know what happening the next day. In april last year,George couldn,t come to the engagment party, he was so sick.Than again he had a couple of better month, in July he had a very bad infection, and so on. Ups and downs all the time, you never know, what next.I may scare you with this post, and I am very sorry. I posted earlier, and also tried to give you the advise to have your wedding as early as possible. I see now that I was wrong.I hope your Dad is getting better. Best wishes Kate

[Carrie]

kate,

You’re not wrong! We thought of the same things and I took no offense to your post. Don’t worry about it .

I only wish our families would be more open to us eloping and then having it blessed by the church later. Stubborn families .

Carrie

[JulieMarie]

Carrie,

Do you think if your dad would get worse by the time your wedding date comes that you could elop in New York so your dad could be there and still go through the one in the church and if your dad has a good day he’d be there too. If your dad becomes wheel chair bound what if he’d carry your flowers and you’d push him down the isle? Just a thought. At my cousin’s wedding last year I pushed our gpa down the isle before church started and then got his wheel chair out of the way until after church.

I’m sort of in your same vote, I’ve been dating my boyfriend for over 5 years, we are waiting til he gets out of college, which will be either May or August 2006 if all goes well, and then we are going to do the engagement thing and marriage. With all the family stuff I feel like eloping someplace warm and sunny and then just having a reception back home.

[Carrie]

JulieMarie,

I lean toward your idea of getting married by Justice of the Peace in New York with my dad present. I presented this idea to my mom and she said “You have to do it ‘right'”. Sigh.

I think I’ll have a talk with her again. My fiance’s mom said she didn’t mind if we eloped, as long as we had the marriage blessed in the church later. I am SO for this. Fiance would like the same. I just have to get my parents in the same boat.

We have every intention of doing it in the church … eventually. Hmm… lots to think about.

Thanks for the advice .
Carrie

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