stem cells are all in !

    • Anonymous
      October 28, 2009 at 4:23 pm

      Alice just got her stem cell reinfusion. YAY !

      it was actually a very small bag and took less than 30mn to reinfuse – of course it was more of a production, as they were brought back in a big “Cryosafe” tank where they were tucked away in the cold since Oct 1st.

      I have to admit, Alice and I were very amused because the man who brought the stem cells in was extremely cold – he could not have represented Cryo-technology better – he did not smile at all, and when Alice told him to take good care of her babies as he was pulling the bag of stem cells out of this cloud of dried ice he hardly acknowledged her. When he was done he turned to the nurses and said in an android-like manner “it was nice meeting you” and left with no goodbye, nothing, to Alice or me.. Since we don’t “get out much” these days we’re very amused by this kind of story..

      It’s funny, because they told us that we might smell either cooked corn or garlic after, from one of the chemicals that preserves the stem cells – and sure enough, I just got a huge hit of cooked corn (smells good – garlic would have been good for me too though).

      So now these cells will graft into the bone marrow to start producing a new immune system. This will take about 10 days before Alice’s cell counts start going back up.

      And before they go up, they will continue to drop, from the continuing effects of the chemo. Alice is almost neutropenic now (no first line of defense) so when she goes out of her room she must wear a mask, and we must be extra attentive to washing hands and what she eats etc…

      Dr. Testori explained this morning that she may be getting fevers, mostly at night that should last 1 hour or 2. This is because without an immune system she has no defense against bacteria that might come into her body, and the reason why she may get fever just for a couple of hours is that that is the time it takes for antibiotics to work on those bacteria.

      They will be watching her closely of course for any signs of infection.

      This is a very exciting day. Of course we’re crossing our fingers that in the following days, as her immune system completely shuts down before rebuilding itself from the stem cells, that Alice won’t get too many side effects (nausea, or sores in the mouth/throat..).

      She’s sleeping profoundly now, letting her stem cells settle in comfortably..





    • Anonymous
      October 28, 2009 at 4:30 pm

      [COLOR=”Navy”]I don’t know what to say. I don’t know how to reply. I’m just so amazed at all you two have gone through and to think that it actually might work!

      This is just so amazing I’m having difficulty absorbing it all.

      But, oh, how I am sending you my biggest hugs and best good wishes![/COLOR]

    • October 28, 2009 at 5:20 pm

      This procedure is so overwhelming. It’s hard to describe the excitement.
      Positive energy and prayers will keep Alice safe in this brave new pioneering medical procedure. I can only envision the day when stem cells will be standard procedure for many many diseases.
      The both of you have not only supported each other, but the rest of us here and all those worldwide who are suffering. The courage and bravery you have displayed is going to make the world a beter place.
      My special blessing for Alice is floating through the unviverse as ultra protection to keep her safe and sound.

    • Anonymous
      October 29, 2009 at 12:49 am

      Wow Sophie that is something! This all seems so fast, but I’m sure it is slow for you two. Thanks for letting us know about the stem cells going in. Best wishes to you both and lots of love and positive energy.

    • Anonymous
      October 29, 2009 at 12:23 pm

      I feel such relief for both of you that the stem cell procedure has been completed.
      We have seen pictures, been told details of procedures Alice has gone through and her reactions to each procedure.
      We have know her downs, missing home, her dogs, being out with friends.
      We have known her ups, flying home, spending time with Sophie and her beloved dogs, seeing family and friends.
      Alice, as you have gone through this final phase of your long journey we wait with anticipation and excitement while praying for the best possible outcome.

      God bless you always


    • Anonymous
      October 29, 2009 at 2:04 pm

      Thanks for the update of the “journey”

      What you are both going through takes tremendous courage and strength!

      What makes this even more special is that you have the guts to share with all of us this very personal experience.

      Thanks you to both of you for doing so as this gives the rest of us hope that one day we might be able to do the same and become well.

      Please give Alice a big hug, and make sure she hugs you back from me.

      Although we have never met I feel like I have gotten to know both of you.

      Hugs and best wishes,
      Rhonda from Canada

    • Anonymous
      October 29, 2009 at 2:18 pm

      looks like the worst is over. Now Just rebuild your system and see what you got. this has been amazing that you have shared this with us.
      Good Luck and keep smiling:)

    • Anonymous
      October 29, 2009 at 3:57 pm

      I first want to say I am so glad Alice is doing well.
      And as the others have said, THANK YOU so much for sharing this journey with us. The two of you are a great team and it all seems so, well, easy.

      I talked with Alice for only a very few short minutes. I told her how my Dr told me that he would no way recommend this procedure to any of his patients unless they were very bad off and failing fast. He said it’s a good thing for those who survive…but so many do not. I really worried about Alice when he told me that b/c I was afraid she was misled or something…I didnt know what to think.

      I think that if someone is REALLY bad and failing fast…those are the ones who dont make it. I dunno…just my thought.

      It seems that Alice has one hell of a team of Doctors b/c there has been no indication of anything going wrong. And that is super awesome !

      I used to think that my dr was aggressive. Not so.

      Alice….get lots and lots of rest….I’m curious, can you move your toes now ?

      Best well wishes to you both !!!!!

    • Anonymous
      October 29, 2009 at 8:33 pm

      Very exciting for you Alice, please keep us posted on the results. I am very interested in any forms of treatment available.

    • Anonymous
      October 29, 2009 at 8:53 pm

      Glad things are going well for Alice!

      So, is she in strict isolation now? Anyone who comes in must dress in a gown, and wear gloves and a mask? I hope so.
      And watch that when someone comes in, that they wash their hands
      first, or use that anti-bacterial hand lotion.

      Now is the boring time for Alice, when it’s just, “wait and see what happens”.
      What is the planned length of stay in the hospital now?

      I do hope things keep going well, and no infections make their way to her.

      And how are you doing, as Alice’s caretaker? I know it can be as hard on the caretaker as it is for the patient–you take good care of yourself too.
      Frank sends his love to both of you–I keep him up on the daily posts of you and Alice. He wishes that I could have gone through it, too, but it’s just not in our cards due to the moolah. By Alice doing this, makes one more step towards it becoming a normal protocol of treatment, so that the insurance companies will then be forced to cover the procedure. I hope I can live long enough for that to happen. Frank takes very good care of me, as Alice tells that you take good care of her. You know when someone truly loves another person, when a severe health problem happens, and the love shows in the care of the ill one. I am now closer to Frank than I have ever been. And I bet you are closer to Alice since all this crap with CIDP has happened to her.

      Take care, the both of you, and hope it keeps going okay for Alice.

    • Anonymous
      October 29, 2009 at 10:45 pm

      Well? About now, One might consider garlic considering the time of year? [Insert joke here] But, That it smells like ‘something’ rather than ‘nothing’ has to be a good sign?
      Alice? For a while? Consider yourself a ‘hothouse flower’ – In my estimation one beautifully smelling orchid-once blooming, which can only be grown under the toughest of environments! And, do keep in mind? That orchids are VERY TOUGH plants! I am one of the [your] fan club? Hoping truly HOPING! That this whole thing will WORK for you! I would truly love to know that ONE person has gotten a total remission of our pain[s]. Therefore? The eyes and legs are crossed? And the fingers too, tho the toes don’t work! Oh well.
      Please be super duper careful for the duration? This is the scariest part in my opinion-when you are open to all kinds of funky new and different issues you didn’t want nor need to beging with!
      I am looking forward to you sailing thru this all and reuiniting w/your critters!
      Both you and Sophie have shown far more strength than anyone I can imagine. Hope always and heaps of heart to go with it!

    • Anonymous
      October 30, 2009 at 8:54 am

      ok, i feel i need to do a reality check here. but first, let me say thanks again so much for all of your good wishes and support. as always, i appreciate it.

      so, not that we have held anything back… but, it is almost beginning to seem that this process, this treatment has been completely painless. well, that is mostly true– but– i did have a a not so good night, the night before last… it was the night after my stem cells were re-infused. they warned me that sometimes the preservatives used in my stem cells cause a reaction in folks. well, it sure did in me. i awoke through the night with uncomfortable nausea and a mild fever. for sure, i didn’t feel well… they gave me medicine for nausea right away and worked to control my other symptoms like fever, headache and general body aches throughout the night and half of yesterday. not fun.

      the doctors and nurses tell me it is all normal and par for the course… this gave me piece of mind. anyway, by mid day, my fever was gone and i began to emerge as myself again. last evening and night were uneventful.

      this is not a “fun” time in my life, obviously. but it is a necessary time. my opinion so far about the experience of a stem cell transplant is: it ain’t as bad as you may think. and as a side note, allow me to remind that the mortality rate is below, well below 1%. need i tell you what our infant and maternal mortality rates are? done in the right medical facility, stem cell transplants have undoubtedly become very safe. stacey, tell your doctor to either go back to medical school or better research about what a non-myeloablative stem cell transplant entails– his ignorance annoys me as he should know better before he speaks under the cloak of a medical degree. this ignorance is apparent in many neuros, including my prior one, the one i fired. pardon me, i don’t mean to come across as aggressive in this regard, but i have heard this inaccuracy so much now that it’s really beginning to irk me… non-myeloablative stem cell transplants for auto-immune disease is done differently than those for cancer… and a doctor, especially a neurologist, should know this before he speaks.

      so despite my mostly good days and my not so good days, i continue to improve cidp-wise… yes, i can move my toes, stand up on my toes and walk with amazing zeal… today i am officially neutropenic– so yes ken, all precautions are in place– gowns, gloves and masks.

      more to come… 😎

    • Anonymous
      October 30, 2009 at 12:04 pm

      See, Alice…I think he wants to keep me under his “cloak” by giving me the ivig. Any time I ask about a new thing…I’d asked about sub-q IVIG…he said no way to that, too. I was totally confused b/c he really made it seem like a person will nearly die before being built back up.

      When I went back to him after getting a really crappy second opinion, he made me feel unconfortable. Things seem better now…but, I do wish I could find someone that will really listen and give me more hope. All dr’s are different, that is for sure.

      I cant wait to go back to him in Dec and tell him how well you are doing.

      So, do you feel as if you dont have CIDP now ? You werent able to move your toes before, correct ??
      It’s incredible what is happening for you.

      I cant move toes on either foot now…I’m watching things slowly get worse. I dont use a cane in my house…but I wobble like a little old lady. I hate this.

      I am SO happy for you. And, I’m sure as it’s been “no piece of cake”, I’m so glad it’s been so easily tolerable for you.

      You give me hope…ALWAYS! I thank you.


    • Anonymous
      October 31, 2009 at 11:31 am

      Congratulations, Alice. I haven’t posted in your threads before but have been reading following your journey and just wanted to let you know how impressed I am with the way you (and Sophie) have attacked this with such strength and grace. It sounds like you’ve had fewer side effects than I get from my regular IVIG 😮

      Good luck and I so hope this is a great success!!


    • Anonymous
      November 1, 2009 at 11:31 am

      this is amazing. I am stoked!!! thank you again for sharing this.

      wow corn flavored with garlic even I wonder if that comes roast beef scented. thats what I would order.

    • Anonymous
      November 1, 2009 at 8:08 pm

      thank you so so much for all your responses and wonderful messages of kindness and encouragement.

      ken, you ask me how it feels as a caregiver – and i didn’t answer right away because i needed to think about it a bit : that’s basically how it feels, like i don’t need to give it much thought

      not because i’m a “natural caregiver”, but because

      1. i love alice – i can think of past relationships where i just know that it would not have worked out, and it would have been trying for me to be in a caretaking role – but i’m with alice 100%, so it feels like i let go to the moment with her, take it one day at a time with her

      2. alice lets me take care of her – and isn’t that much more difficult in a way than being the caretaker ? easier to give than it is to receive ? i’m lucky that alice doesn’t struggle with that because that would make it that much more difficult for me.. i’ve always felt so grateful that she didn’t push me away as her illness progressed (oooh i’m not saying she didn’t try once or twice)

      3. luck – i just feel so lucky that i had some savings and was able to stop work when she needed me – there are other times in my life where i just would not have been available – i feel very grateful for this – everything just fell into place

      honestly i don’t feel like i give alice any more than she gives me.

      she helps me too. and she helps me help her

      not that there haven’t been some hard moments, but it just feels like we got through them together, and i definitely feel Ken, as you say, that these times have strengthened our relationship in a very special way (now that you got me going i feel i could keep writing miles on this subject, but these are my basic thoughts)

      big hugs to you and frank,

    • November 2, 2009 at 9:39 pm

      I’m wishing Alice the best with the stem cells. Hopefully this paves the way for a future cure of this horrible disease.

      Thanks to Alice for “bravely going where” few “have gone before.” (think of this with William Shatner’s voice).

      Live long and prosper. 😀


    • Anonymous
      November 2, 2009 at 9:51 pm

      Let’s all hope that there is a proliferation of good cells and not ‘tribbles’?
      Best always especially NOW!