Heading back to Chicago…

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

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.
Laurel

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!

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!

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

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

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.
Hugs,
Ken
(KEDASO)

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,

[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]

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.

Tina

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

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.

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.

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.

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

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

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

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!!!

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.
Rhonda

Rhonda,
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

Dawn,
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.”

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

I look forward to talking to you again….

Stacey