Heading back to Chicago…

    • Anonymous
      October 16, 2009 at 4:11 pm

      i’ve got the jitters again– normal i’m certain. we leave san francisco for chicago tomorrow (saturday) and on tuesday, i will get admitted for the 4 days of chemo followed by the reinfusion of my stem cells… the biggest part of this procedure is now lurking just around the corner–yikes…

      bought a box of n95 face masks just to be extra careful not to get a bug flying during flu seasons– sheesh. the idea of breathing everyone’s air on a plane for 4 hours makes me nervous– just before a stem cell transplant.

      thanks everyone for your advise on the hair loss– it’s almost all gone now 😉 i have a bunch of knit beanies for when i am cold, otherwise, i don’t care about the way i look… this is my time to heal and be as comfortable as possible.

      we’ll be in touch, of course.

    • October 16, 2009 at 5:43 pm

      Have a safe flight!! Maybe you could put on knitt gloves to prevent you from rubbing your nose or eyes. It is rainny and cold here, however, they are calling for 70 on Monday. Best wishes.
      DAwn Kevies mom

    • Anonymous
      October 16, 2009 at 8:27 pm

      Alice I have thinking about you and was just about to start a new thread voicing my concern since we haven’t heard from you for awhile. I’m glad you’re hanging in their without any complications except baldness . Take good care of yourself. All my prayers and positive energy are with you and Sophie.

    • Anonymous
      October 16, 2009 at 11:04 pm

      Where do we order our ‘beanies’? Or are they gonna be ‘auctioned’ off somewhere? 😀
      Good thing about the masks tho, these days we are all ‘sharing’ to much of too much!
      Be sure to hit a ‘Target’ and look at gloves? IN Chi Town- dress warm! I think they’ve had snow there already. They’ve got some fingertip-less ones that are about $10. and keep your HANDS warm. I wear ’em to cold doc’s offices all the time [even in summer], and get asked by all ‘Where’d you get those?’ So I guess others feel a similar need.
      You will be on my mind great heart, until we hear from you again. It IS gonna go GREAT! Keep telling yourself that positive stuff. Alternatives are unacceptable.
      Hugs and hope always!

    • October 16, 2009 at 11:32 pm

      I’ve stored up a whole boatload of positive energy for you, and it’s going to be there whenever you need it. I see a very bright future for you!

    • Anonymous
      October 17, 2009 at 12:51 am

      I havent seen beenies with the pom pom on top in a long time. you should sport one of those. good vibrations sent your way. god bless

    • Anonymous
      October 17, 2009 at 7:43 am

      this morning makes me think of this– think you will all remember it– well, maybe not the youngsters 😉


    • Anonymous
      October 17, 2009 at 8:41 am

      I like jon denver his voice is so soothing. have a safe flight

    • Anonymous
      October 17, 2009 at 9:15 am

      Stay well, and you’re gonna do great.
      We are ALL behind you on this great step.

      One thing happened to me on the Cytoxan that you might like–
      I lost all the hair in my armpits. One spot you may like losing the hair in, as one less spot needing to shave.

      I wear a cowboy hat and shades to cover up my loss hair.
      An’ ah rod mah hawrse usin’ mah ‘lectric wheelchair, off inta that there sunset, lil’ lady.

      Hey chick, like ya gotta come up with a cool look, dudette.

      So, keep us informed, and take care over the next few days.

    • Anonymous
      October 17, 2009 at 9:56 am

      This trip is the beginning of the final phase taking you back to a healthy immune system!!! Woo Hoo! 😀 I have a very special French wine I am saving for the celebration party – guess I might just have to go to California so we can drink it together!!!!! :p :rolleyes: 😉

      Please know that you and Sophie are covered in prayers and hugs,

    • Anonymous
      October 17, 2009 at 10:28 am

      [COLOR=”Sienna”][FONT=”Century Gothic”]Much love and long distance hugs to you and Sophie, Alice.

      I hope you both know how much all our hearts are with you. You’re family now.[/FONT][/COLOR]

    • Anonymous
      October 17, 2009 at 12:56 pm

      Hi Alice,

      I haven’t been able to post for a while (there was an an issue when I changed e-mail addresses). However, I’ve been able to keep up with your journey and have kept you in my prayers. It’s clear to see that your positive spirit will work in your favor.

      Take care and know that many are praying for and with you.


    • Anonymous
      October 17, 2009 at 9:08 pm

      Good luck this week and we will be praying for a very successful outcome!

    • Anonymous
      October 17, 2009 at 10:22 pm

      well we made it. gosh i miss california weather. oh well, it’s not what i’m here for. and chicago is pretty awesome.

      thank you for all your nice thoughts and big energy– i have come to crave it.

      so… i have tomorrow and monday– then in the hospital on tuesday…

      more later 😎

    • Anonymous
      October 18, 2009 at 3:27 pm

      Thinkin about ya. Good Luck Next week.

      PS when you fly sit in fwd cabin. air moves aft during flight toward the
      outflow press. valves. keep the vent open during flt pointed just ahead
      of your face and wear a mask. Don’t get on til last. all these will up your odds.

    • Anonymous
      October 18, 2009 at 6:51 pm

      I can’t even imagine what amount of cytoxan you will be getting in those 4 days, so I can’t tell you what to expect. But I remember after my 1800 mg infusions telling my husband that my legs below the knee, especially my feet, felt like swollen frozen turkeys. Also, when my uncle had lymphoma 10 years ago & had the bone marrow transplant, stem cells removed, etc. I remeber he developed neuropathy in his feet for a few years. No loss of strength or function, however. I wonder if you will get this side effect with such large doses of the cytoxan; hopefully not. I will be thinking of you a lot this week.

    • Anonymous
      October 19, 2009 at 10:58 am

      so i just heard from the nurse who was calling to confirm tomorrow morning’s line placement. i was thrilled to learn that they place it in your arm, rather than neck or chest! woo hoo ~ it’s the small things but i sure am happy about that. that crazy star trek catheter they put in my neck for the harvest was very high on the creepy factor scale… it was thick and 6″ in length– eeek:eek:

      so after they put the line into my arm of choice, we head over to be admitted into the transplant ward. my first of 4 chemos will begin tomorrow. wow, i’m on the last leg of the journey… strange– it feels kind of anti-climactic in a way. like not such a big deal after all. ok, i admit, the worst is just ahead of me… but still– 4 days of chemo and that’s it. when i think of the crazy pain i have had with my cidp for months on end, forget 4 days, i figure i’m well trained for this succinct period of time.

      as always, thanks for your well wishes and concern. it feels good, like i’m fighting a fight for all of us. just think– if this cures me, as it has others before me, more doors will undoubtedly open for others to obtain this treatment. i guess i’m saying that, with your support, it feels like we are all in it together… thanks.

      p.s. pam, i’ll be getting 3,400mg of cytoxan daily 😉

    • Anonymous
      October 19, 2009 at 11:09 am

      Alice good luck. we are praying that all goes well for this next part of your journey.
      If you don’t mind me asking, How much was this procedure? when is the doctors who are doing this study going to submitt their findings? I am just courious about how long it might take for this to be available to the rest of the CIDP patients? I pray that ins co will begin paying for the procedure to be done.

    • Anonymous
      October 19, 2009 at 11:42 am

      when you pay out of pocket, they charge the patient a flat $100,000. that includes everything except your accommodations of course.

      this particular clinical trial ends in april of 2010, i think. i’ve been meaning to ask the staff if they intend to continue it or start a new one– i will ask when i get a chance. but– seriously– the exact same protocol is being done in brazil for half the price. my doctor– the head of the program– dr. burt– works with the head of the program in brazil– they even co-publish re: their findings. and there are other places around the world doing it too– if you care to enter the world of medical tourism, that is. as far as when dr. burt’s findings get published and what the fda will do with a study that had 11 participants is another story– one that i have no answer for. but, the direction is good, albeit slow. for instance, dr. burt’s findings may inspire many other neurologists to initiate new protocols around the country– who knows… in closing, if i didn’t have the parents i have, hence the resources, i would have gone to brazil…

    • October 19, 2009 at 2:53 pm

      Hi Alice! nice weather today, just for you!! Good luck with your proceedures. Maybe you can get Sophie to take a walk on Mich. Ave for you, a garretts popcorn, it just opened. It is the best popcorn in the world, REALLY. Last week during the grand opening, people waited for hours for a free bag!! I love the cheese!! Well, the carmel too, actually, the chocolate covered is awesome too!!
      Dawn Kevies mom

    • Anonymous
      October 19, 2009 at 4:15 pm

      You have done great!
      Wishing you good luck and praying
      for success on this last leg of your journey.

    • Anonymous
      October 19, 2009 at 8:23 pm

      Alice, Have a great trip. I’ll keep you in my thoughts and prayers. Maybe they will let you sit with the pilot??

      Ms. Judy

    • Anonymous
      October 19, 2009 at 10:59 pm

      Alice, I hope that your cytoxan infusions go as well as mine did. I know I only had them once a month, but really suffered no ill effects, just the turkey legs, LOL! Good luck for the next 4 days!!!

    • Anonymous
      October 19, 2009 at 11:42 pm

      HI Alice
      Thank you for the information. I wish I had the money so Ryan could take part in the study but we don’t. we see Dr Richard Lewis at Wayne State University here in Michigan on Nov 2nd again. Ryan has been on very high dose of prednisone 80 mg a day and has for the past month been in process of weaning down. He has also had PE and is doing pretty good with gaining his ability to walk. he can walk short distances and his legs feel strong and he is getting some sensations back in his feet and legs but his hands and arms are feeling very weak. His fingers have been doing some weird things. when he tries to stretch his hands out his 2 middle fingers can no longer straighten out and his pinkies are all over the place. he has a very difficult time typing, he has to hen peck. do any of you have that problem too?

      Ryan has been discussing doing chemo with cytoxin with Dr Lewis. Don’t know what he will say when we see him but I know he plans to talk to us about it because Ryan is wanting to do it so badly. Its been something he has talked about since he first got dx and he was researching treatments. The more he finds out about cytoxin the more he thinks its his miracle treatment.
      Our other doctors think that Ryan shoudl continue on with PE and prednisone but Ryan doesn’t want to just walk a short distance or do prednisone allt eh time or PE every 2 weeks for the rest of his life.
      So we will see what Dr Lewis says in a few weeks.
      well I better get going. good luck I will be praying for you.

    • October 20, 2009 at 2:59 pm

      I understand what it is like watching your son not be able to do things kids/young adults do. I sympathize. I have been nervous lateley reading a couple of posts from old members that all of a sudden stop responding to their ivig. Reading Alice and Pam’s info gives me hope should that happen to us. Just my unqualified mom opinion, hope you are ok with my giving it. The way I see it, Ryan is pretty much done with puberty, (that is my drawback and reason for holding out on more aggressive treatment for Kev, as well as hoping puberty itself will put Kev into remission) so since he is on prednisone which has its own side affects AND this current treatment plan is not arresting the situation, why not try the cytoxan. Especially if Ryan is ok with it. From Alice and Pam’s writings, it seems like a reasonable option if all else fails. I hope your appointment with Dr. Lewis goes well. Do you have his e-mail? I would like to contact him regarding weaning protocols for ivig, as Kevin weans again in Dec.. I keep praying that God is going to help all of these people, especially the children. Best wishes!
      Dawn Kevies mom

    • Anonymous
      October 21, 2009 at 12:40 am

      You are right to hold out on anything more drastic for Kevin at this point. For one thing, he is leading a fairly normal life right now (not including IVIG infusions), whereas Ryan is not for a 20 year old. But from reading back 7 years now, I also used to ready a lot on the CIDP children’s thread & remission in children was not uncommon. Be patient & always assume it will be “best case scenerio.”

    • Anonymous
      October 22, 2009 at 2:27 pm

      Alice, I have been away for a few days…dang flu bug…
      How are YOU ???

      I look forward to talking to you again….