Welp, there has been a change in plans and Sweet Home Chicago is gonna have to wait. (more like prepare, cause we will be hitting the town hard when we are done here!)
Found out today that they have found the last of 3 cord blood matches for her and are prepared to start in 2-3 weeks! This was actually more of a shock then you'd think to us. We hadn't heard anything since the initial consultation except that they had gone to cords cause she had no matches and then nothing for a long few weeks since. We really thought it would be over a year or more before she got any kind of transplant. I'm not sure why they need 3 cords. Maria thinks they wanted one as back up but idk. So we are a hurricane of emotions, mostly good ones, and preparing to prepare for this new phase. LOL And apparently we get to do this part of the journey with Jarhead Larry and his wife! While of course I wish we hadn't met this way, it is kind of...nice...for lack of a better word, to have someone to kind of go through this with. Good support for all, I hope! We anticipate to know a lot more this coming week and I will of course keep everyone posted. I decided to start a new thread since I know what KIND of transplant now and that it IS going to happen! Would LOVE for cord transplant recipients to lend their story here!
My husband had a double cord transplant five years or so ago. They used two for him for quantity. Eventually one of his two cords dominated and the other faded away. Three sounds even better. That may help to make the engraftment period shorter.
May it all go well for Maria and for you, the caregiver.
He had AML M 5. Unfortunately, he relapsed after three years, had a second transplant, and was diagnosed as relapsing again just yesterday. The leukemia doctor told him that he'd be a candidate for a third transplant. We will see his stem cell transplanation doctor in about two weeks.
That may sound discouraging to learn, but those baby's cells kept him going for a long time--three years--and when he relapsed, there were several potential adult donors, one of which became his matched unrelated donor (MUD). That transplant lasted a year and a half.
So since he's relapsed twice now, once with cord and once with a MUD, one was not more succesful than the other, at least for him.
Wow! What a journey you all have been through! I admire that you both seem to be staying determined...(I dislike positive in this situation lol) That is the key. Hopefully 3rd times the charm yeah? ;o)
Will keep him and your family in our thoughts and prayers. Was it different the second time around? I know that might be a loaded question, but as I am sure is the case for everyone, relapse is such a fear and sadly an all to common reality and seems unimaginable after everything you go through to fight it off. I guess I wonder what that experience is like compared to first initial diagnosis. Emotion wise especially.
I'm glad to hear she's moving closer to the transplant. I hope things are going well.
relapse is such a fear and sadly an all to common reality and seems unimaginable after everything you go through to fight it off.
So I'm sittng here in a relapsed state after 4 years. I lived those 4 years with the attitude that this was never going to return. Ever since my transplant, I tire more easily but I've fought hard to keep running my life the way that I wanted. Not worrying is one of the best things I did. If I had spent those 4 years being concerned about a relapse it wouldn't change a thing. I just returned from a business trip to Costa Rica. I took the weekend to tour the rain forest with a rafting trip and a zip line tour. I was totally exhausted that day but I had a blast and am so glad that I didn't let my physical limitations stop me from doing it.
Take advantage of life because life won't hestitate to take advantage of you.
When I relapsed, five to six months after achieving remission, I was so okay I surprised myself. I don't mean I was turning cartwheels, far from it. But I knew I'd beaten it before and never really doubted I would again. It was just a major pain in the ass. My only major disappointment was that my original transplant date came and went while I was back in induction. That sucked. But I figure it worked out well.
If it had been a longer time before I relapsed, I suspect it would have hit me harder. I'm generally a very determined guy but if what happened to Kelly had happened to me, I think I'd be freaking a lot harder than he is.
Anyway, how great is it they've found some cords and are ready to get to work? I'm glad most of your emotions are good. This should wind up being a good thing.
Keep us posted.
@Paralyzed Thanks! I hope it stays in the rearview mirror and eats her dust. LOL
@Kelly, Sorry to hear it, but I am glad you are determined. And I guess the best thing would be to live the best life you can while you can. I'm trying harder to stay positive, I've always been determined for her. And I am so tired that if I didn't try to be positive, I think it would be the end of me. Makes me feel like an ass saying these things, because she's the one fighting the fight...but...
@Tex VERY grateful they found matches. Shocked they did and this soon and 3 at that! Eager to push through and start to really work on healing and moving forward.
Jamie, you mentioned that Maria's the one fighting the fight...no, you both are. Transplant happens to the whole family unit. Not just the patient. So never feel bad for feeling dog-tired, or out of cheerfulness and positive thoughts. It is hard to keep your spirits up 24-7, maybe even harder on the caregiver than the patient. The best you can do is exactly what you are doing---keeping a positive out look and a determined spirit most of the time. But allow yourself to feel down, discouraged or fearful for a moment or two, just don't let it get the best of you. And remember we are always here for support during those down times:)
Thanks Pamd. I just don't want to give the impression that it's all about me. LOL But truth be told, it's hard to say Maria feels this or Maria thinks that because she RARELY will express how she feels or what she thinks. I just know how I feel and what I think and imagine hers are stronger. She is getting scared now. We will not be going to Chicago, but we will be visiting west Texas family and friends for a few days and then to Dallas to do the same. She said she doesn't feel like she is definitely going to die, but she is scared of the counts being so low for so long and the risks with that more then anything.
While in west Texas we are going to go talk to a funeral director and make her plans. I know it sounds very morbid, but she wants her ashes to be placed on the stone by her moms grave if and when she does go, God willing it's when she is old and gray but if not, it's important her wishes are known. We actually already ran into conflict with talking to her family about it. Yeah, they aren't keen on cremation. But it isn't about them nor their beliefs so, better to take care of it all now I guess. She just told me her plans of travel today so I am a little down with thinking about the exhaustive running and the hard idea of planning a funeral. It's just not something I ever thought I would think about at my age or hers, but it is something everyone should I guess. I could die in a car crash tomorrow while she lives on to be 90 or something!
Anyway off the gloom. I am very grateful for the support here. I think I am already on the brink of a breakdown, pretty sure without this place I would have been pushed over a long time ago!
I'm trying harder to stay positive, I've always been determined for her. And I am so tired that if I didn't try to be positive, I think it would be the end of me. Makes me feel like an ass saying these things, because she's the one fighting the fight...but...
First, your not an ass, you're human (for some people that's the same thing but it's not for you). You're going through this fight as well and there is no way that you can keep the same pace all the time. This forum alone is the perfect place for you to vent and to let us know how frustrated you are. You need support just as Maria does.
A lot of people have a big problem with the word "positive". I've started saying "determined" instead. There is no way a person can be positive all the time. If you feel negative at times, that's ok. In fact, I think it can be necessary from a psychological view to allow ourselves to go there. In my case, I allow myself to get negative but I do try to control how much negative time I allow myself. That works for me but it may not work for everyone.
So the point is, don't be hard on yourself for the way that you feel or the way that you express yourself. We're not here to judge.
I hope both you and Maria can enjoy your 2 trips before her transplant. Both of you have to be ready for the challenging road ahead. I am certain you both can get through the transplant and put cancer in the rear view mirror. Try and do a few fun things,get some pleasant images into your head so when you are back in the hospital you can imagine your selves in a nice environment. We went to Montreal and the botanical gardens the weekend before her transplant. We also put together a 3 hour slide show of images from our friends so she would have something nice to look as she was getting the myeloablative chemo which was pretty rough. good luck and do take care of yourself