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CarrieMember
Christina,
I didn’t realize that you had such a wonderful connection to Bill and Mary. I’m so glad that it was possible because of this board.
Love,
CarrieCarrieMemberI’m so sad to hear this…
Love,
CarrieCarrieMemberDi,
I’m so sorry to hear that he’s still not home. I know how difficult it is to see someone so young decline so fast. I keep looking at pictures of my dad not even 3 years ago and thinking about how he’s changed. I’m nervous about going tosee him at the end of the month because I know he’s physically different from when I last saw him in June.
I hope that Scott gets better soon. My father had cellulitis, too. Seriously, if you want someone to talk to who understands, my mom is a sweet person and I’m sure she’d like to meet you. It’s up to you . Let me know and I’ll arrange it.
Love,
CarrieCarrieMemberThank you all, again!
Dad’s STILL doing good. No fever, no bipap, talking quite a bit and walking (a little)!
He went to PT today and first walked 6 steps, then 4, then 2 (with breaks in between). His nurses came down and cheered him on!
Dr. Baer hinted that they’re still trying to move him to a rehab center so I guess they’re moving things along there.
Also, I got a plane ticket to see him on the weekend of the 27th which is his 55th birthday . I’ve been thinking about it and wanting to suprise him. I mentioned it to my mom and yesterday dad said, “Carrie hasn’t been here for a while. Maybe she should come up for a weekend.” Well, that sealed the deal .
I’m excited to see him and I hope by then that he’s in rehab.
Love,
CarrieCarrieMemberHere’s to your new life! Happy new birthday (Well, almost ). I truly hope that this transplant goes well for you. My dad’s SCT for lymphoma went SO well. He only had a few mouth sores and some exhaustion. I hope things go even better for you!
Love,
CarrieCarrieMemberThank you all!
Dad seemed to have a good day yesterday, too. He’s getting a little better every day .Di, I thought for sure that Scott would be out of the hospital already. I’m sorry that he’s not . I hope his spirits get better. Who can blame him for being a little bummed?
Love,
CarrieCarrieMemberJane,
My dad also had NHL, chemo, then a SCT. Then Rituxan. A year and a half after ANY treatments, he got MDS. He’s also been struggling with infection. He always goes to the hospital but after this last bout (almost 2 months and he’s still there), I have to wonder if he’ll want to go back in if he ever gets out.
I hope your brother and my dad can hold out for Revlimid and that it’s the miracle we’re looking for.
Love,
CarrieCarrieMemberOh Don, I’m so sorry.
I am so sick of this disease .
I’ll keep you and your family in my prayers.
Love,
CarrieCarrieMemberI hope your transplant keeps going along fine!
I’ll be praying for you,
CarrieCarrieMemberSandy,
Thank you! I followed your posts with Joe and I admire your courage and strength. This group is so great!
All,
Dad was doing better last night. Respirations were better, fever was gone again, and they only had time on the bi-pap for a little while yesterday. They were supposed to put him on it during the night. He’s definitely tired and having a rough time but, again, nothing like a couple of weeks ago. He’s a brave man.Love,
CarrieCarrieMemberThanks everyone! He’s still doing okay but his fever is higher and he’s back on oxygen. He had about 12 oz of fluid removed from this lungs on Friday that they sent to pathology. We hope to hear more today.
Thanks for the messages and the Hellos to my mom. I don’t think she’s been here since Friday so I’ll bump this message up for her to read.
Love,
CarrieCarrieMemberI’ll add her to mine.
Carrie
CarrieMemberNicole,
I’m so sorry to hear the news. I’ll be praying for your family.
Carrie
CarrieMemberHi all,
Dad had a good day yesterday. Normal temp (at least at around 5 pm), sitting on the edge of the bed, and working with the physical therapist.
Not sure about today yet.
Thanks for the kind words,
CarrieCarrieMemberI’m right there with you. My dad also had NHL about 10-11 years ago. He had CHOP and was in remission for almost 4 years. When it came back he had an autologous stem cell transplant.
It came back a few years later. He tried Rituxan and he had a good response. Then, a year and a half after he had his last treatment, his counts went down (anemic mostly) and they diagnosed him with secondary MDS.They first thought that they would do a donor transplant but now they say it would kill him. So, he’s pretty much in maintenance. He tried some chemo (Vidaza) but his counts had a hard time responding and he keeps getting infections so he can’t get more treatments until they’re clear. They want to be able to try Revlimid but it’s not approved yet. We hope he can make it until then.
Right now, he doesn’t seem to have any NHL that’s complicating the MDS. He’s just really sick in the hospital (over a month now).
Anyway, we’re kind of in the same boat. He’s 55 (his 55th birthday is next month).
I hope you’re near a center of excellence and that he’s being treated there.
Take care,
Carrie -
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