Update on my mom. I'm here visiting her

kit_kats_mom wrote: http://www.caringbridge.org/visit/sinnes

My uncle started this site for her to give the details of her treatment.

IMO, it doesn't look good. From what I've found online, there is a 12-24 month survival period. If anyone can last longer than that, I'm sure my mom can, however, if her quality of life would be greatly degregated, I'm not sure she'd want to go on that long if you KWIM.

She's talking about going to Moffit (down by my house) and Anderson (in TX) to seek second and third opinions. If anyone knows any drs with an interest in PPC, please let me know. It's a very rare disease so it may be hard to find someone who knows the in's and out's.

Also, this disease is hereditary. I know the markers to have my Dr. Look for and I'll be doing that when I get home. However, the fact is, even if I know I'm likley to get it, there's nothing that can be done. It's a non-curable form of cancer. I suppose I should also get the girls tested too.

I was able to boost her spirits today though. She's really ready to get out of the hospital and get back to "normal" life. I brought travel scrabble and we played a game, took a few walks through the hall (goal for tomorrow, walk outside and get some fresh air for the first time in almost two weeks) and I read to her. She just told me that she'd never read any Mark Twain so I'm going to download an ebook tomorrow and suprise her with that. I'm also taking her laptop to her tomorrow and we are going to watch Jane Eyre.

Keep us all in your thoughts and prayers. This is tough and it looks like it will only get tougher for awhile.

A&A'smommy replied: I'm sorry honey, I'm keeping you and your mom in my P&PT'S. Thanks for the update

amynicole21 replied: I subscribed to the journal to receive updates - hope that's ok. I am so glad you are spending some time with your Mom and that her spirits are still in good shape. She's very lucky to have you

Maddie&EthansMom replied: Cary, you and your mother have not left my thoughts nor my prayers in weeks. I hate that you are receiving such devastating news. I'm glad you are there for your mother. I know that must mean the world to her. You are so strong...please keep your strength for her. Lean on us when need be, that's what we are here for.

I know that MD Anderson is a great hospital (one of the best), but I know nothing about her form of cancer or how helpful they would be. I hear they specialize and treat rare forms often. It's worth a shot to check into it, I do know that.

Thank you so much for keeping us updated. I will also subscribe to the journal.

jcc64 replied: Oh Cary, I'm really sorry it wasn't better news. I'm going to see my brother this w/e- I'll ask him what/who he knows, and I'll ask him about the chemo drugs too.
One day at a time, Cary. Sounds like your mom's got the goods to fight this- be thankful for that.

Calimama replied: I'm sorry. Enjoy your time out there, it sounds like you are doing wonders for her spirit.

luvmykids replied: Cary, there just aren't words Your mom sounds amazing, I am humbled by her ability to laugh in the midst of this You will all be in my continued thoughts and prayers

coasterqueen replied: P&pts still coming your way.

While it's not my mother, our very close family friend who is like another grandmother to my children, was diagnosed recently with an incurable cancer. It got so advanced before they found out that she has roughly 6 months to live. She got an incurable cancer that only 1% of people get. What are the chances . We are doing everything we can to help her stay positive. She's staying at my parents house. We are all taking her to her radiation and chemo treatments (all of us are taking turns to help out) and the girls and I are trying to visit her daily to keep her spirits up. It's helping. Just the fact that she gets to see the girls more often now is really helping lift her spirits.

The more positive your outlook is on this the longer you live. IMO it makes a difference.

MomToJade&Jordan replied: Let me know if you need anything while you are here. Your Mom will be in my thoughts.

HuskerMom replied:

kimberley replied: i'm sorry hon. this must be so difficult. my prayers are with you and your mom. you are such a wonderful daughter to be doing all this for her.

Jamison'smama replied: Sending positive thoughts. Our family had an excellent experience at MD Andersons. They are one of the best.

I am so sorry your family is going through this. I am glad you are able to be there, I'm sure your presence brings calmness to the chaos.

momofone replied: I hope this site is helpful for you.
www.drday.com

mysweetpeasWil&Wes replied: p&pts

ediep replied: sending p&PT to you and your family. I am so sorry you are going through this.

keeping you in my thoughts

MommyToAshley replied: Cary, I am so sorry that there wasn't better news.

Your Mom sounds amazing, and she is lucky to have you and the girls there with her. I'm sending lots of prayers and you will continue to be in my thoughts. I wish I could be there to give you hugs in person.

moped replied: That is a great website to have......

I am sorry you are going through all this - you and your mom are a great team!

MommyToAshley replied: I just went back to the website to see if there were any updates and saw the pics that were posted. Your Mom is just amazing... I know I keep saying that. But, she looks great... she has a smile on her face in EVERY picture. I don't look that good after waking up in the morning, let alone after surgery. She's beautiful and the two of you look just alike. I LOVE that picture of the two of you together.

My2Beauties replied: Wow I'm in tears reading this and the journal as well. Your mother has a smile that could brighten any room, amidst all this chaos and bad news it's so wonderful to see her still smiling. I'm sure you being there helps very much and helps to lift her spirits. I'm sorry your news wasn't better, but it sounds like your mom has a wonderful outlook on life and things in general, IMO, just as Karen said, this is key in living a longer happier life. to you and please KUP.

bawoodsmall replied: I am sorry to hear about the news. The only thing I know to say is spend all the time you can with her and enjoy the time you have left. Make every moment count.

Sakeloonie replied: (advance warning) I'm not good at this stuff so please forgive.

I feel so bad that you've gotten this scary news, been there done that. My only advice is be there for your mom, and remember, as scared as you are, she's more scared. We're all hardwired to put up a strong front for our kids you know. OK that sounds lame, but you'll all be in my thoughts and prayers through this battle. Lots of hugs to you all.

Dee