[Sandy M]

fran, I don’t live to far from your daughter who lives in Sacramento, anyway, when my fiance sought out a second opinion we went to the best, Stanford Univ. and Dr. Greenberg, it is in Palo Alto ca. and is very well known for their M.D.S and hemotology experience, they are a center of excellence..so if you can make it Ca. it’s worth looking into, Dr. Peter Greenberg is the guru of M.D.S ….in Ca.

[Sandy M]

Yes Suzanne,
supportive care for my Joe included regular cbc’s to check levels and he was given tx’s as needed, and antibiotics if infections arose due to extremely low wbc. procrit every week (even though it wasn’t helping)when it was evident that the tx’s weren’t doing him any good anymore it went to “comfort care” meaning only red cell tx. or plts.

Randall,
please don’t throw in the towel just yet, sounds like a second opinion is needed with someone who is specialized in this illness, then go from there, we were told to “get our affairs in order” and that my fiance had only 6 mos. but with supportive care and knowledge about this illness he lived 2 yrs. longer than expected, he also was dx with raeb_2 right from the onset. and was able to maintain a decent quality of life, and got to see our baby son learn to walk.

[Sandy M]

Carrie,
thanks for checking in hun, our brains certainly do have their own ways to help to protect us from loseing it ! and making us able to better cope, I was like you but not with overtime at work, I just went overtime on my kids and the yard work, it’s a copeing mechanism not denial… just don’t deny the tears if they come, or feel guilty about any laughter you might experience ,if you deny thoes then it will only build up and surface later on, and it will be harder to deal with, if the urge hit’s you to cry, then go with it, theres no set time table and be careful not to compare yourself to others, everybody grieves differently and at different paces.
take care

[Sandy M]

Sarah,
I can totaly understand about your wanting to stay with Charlie , I never left Joe’s care totaly to the hosp. staff, I just felt like I was able to be helpful even if it was to rub his feet with lotion or to just hold his hand, this illness leaves us feeling sooooo helpless most of the time, it’s nice to be around, but remember to take care of yourself as well, when the times right for you both, think about the soak, (it will do wonders for a stressed body and mind )

[Sandy M]

Thank you so much for giving us the up-date on Barbara, I knew about her knee but didn’t know how long she would be out of commission, please tell her that I’m able to post on the forum once again and I think of her often…and I know Kate has also been in touch with her
P.S.
Kate, if you see this post, we would all love to hear from you

[Sandy M]

Sarah,
I’m praying that all goes well with Charlies surgery, and that he has a very fast recovery, I’m also praying that you’ll get some much neede rest while he’s in the hosp,being cared for by the staff, some time to spend on yourself perhaps, hahaha like a long hot soak in the tub…

[Sandy M]

Marie..
Oh Marie, I’am speechless !!! I will gather my thoughts and post again when I can comprehend such a nightmare as what you must be living at the moment, theres been alot of advancements in meds since Walden was ill so your son definately has more options going for him … Oh Marie, I’m sooooo sorry

[Sandy M]

Sarah,
Joe would always feel better the following day after getting his tx. especially in the beginning, when he progressed to A.M.L that boost just wasn’t there anymore, … I always stayed with Joe while he was having his tx. to make sure that things were done properly (I had little trust in our hosp.) and it helped Joe to pass the time, it got to be our quiet time, but when the lasix was given he was up and down getting to the bathroom, and got even more worn out from that. I hope Charlie feels better soon

[Sandy M]

Carrie,
crying is a natural release that needs to occur, please don’t put a time limit on going through the grief process, although it was my fiance that passed away and not my dad, I’ve been through the grief and still continue to have lots of sad days but theres light at the end of the tunnel because I’m now having less and less sad day’s and more good day’s, as time passes you’ll find this out as well….. thanks for checking in

[Sandy M]

such a tragedy , my heart aches for you … she will be peaceful now and suffer no more, I have two daughters and a young son and I can’t even imagine the grief your feeling , my thoughts and prayers are with you.

[Sandy M]

Joe was always given tylenol and benedryl before every tx. so he never experienced any bad reactions, it became standard practice with us

[Sandy M]

hello Dilley,
welcome aboard… can you tell us a lil bit more about your dad’s M.D.S ? hiccups for 15 day’s in a row must really be unique,I’ve never heard of anyone that has had that issue before … theres many people here to talk with …

[Sandy M]

Thank you elle, kathy1, sarah
what a great idea kathy1, I have faith they will make a come back and be stronger, and more aware of the future needs of their cities citizens.
It will sadly be a long time til things get back in order, and Terri, I always think of you as well when I hear about hurricanes, it must be so stressful when theres even a small thought of our loved ones not being able to get the medical attention they need, and in a timely manner.

[Sandy M]

YEAH !!!!!
sounds as if you’ll all be leading a full and wonderful life…great news

[Sandy M]

Carrie,
I’m sorry for your loss, it must be beautiful to be surrounded by loved ones when the end comes, my thoughts and prayers are with you and your family.

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