Monday, September 6, 2010

Update

Hi there. I realized I haven't updated any of you on how my dad is doing. So, here's the latest email update my mom sent out (keep in mind, I'm changing the names and such, so that no personal info and is given out).

My husband had the MRI yesterday. Dr G. said there are no active lesions. I should have asked if he could tell how much the swelling had gone down and if there is still any shift but I didn't think about it. I am beginning a list of questions for him and those are on it. I also failed to ask about the blood test results so that's on there too. Also, I want to ask him if plasmapheresis could help my husband's current symptoms improve. I believe he'll probably say no since he did not see any active lesions. As far as the eye test is concerned, it was for optic neuritis and to see if there is any damage to the optic nerve and they saw no problems there.


Dr G. is referring my husband to a neuro-urologist at [a hospital that shall remain nameless] for a urodynamic study for his bladder problems. He said it is possible they can determine the exact problem and correct it. He also told us two things to do to help with his bowel issues. He said it usually takes about 8 weeks for that to work.


We talked to Dr G. for two hours on Monday and we still like him a whole lot. After we got home my husband said, "Why is it I can understand everything he says but I can't understand you?" (He wasn't joking!) The speech therapist and I told him it's probably a combination of things like the fact that there are no distractions going on when we are meeting with the doctor; he speaks loudly and articulately; and he speaks in a way that anyone can understand what he means. It could also be that the Lord is just making it that way because he's the doctor we are supposed to be with at this time.


Dr G. laid out the treatment options a little differently than Dr O. He mentioned the five first-line injectables which are:
Avonex
Betaseron
Copaxone
Rebif
Extavia

He listed Tysabri next.
 
Then he listed Cladribine and Fengolimod. After he listed these two, he put an "X" under them and said he doesn't feel comfortable with either of these drugs because there is not enough information yet on using them. Fengolimod is set to come out in about 3 weeks and Cladribine after the first of next year. He said we will know more about these two as time goes by. He also said that out of all the drugs available, he would consider Cladribine last on the list because once he gives it, there is no turning back. It suppresses your immune system for a year and you cannot reverse it.


At the bottom of the page by itself he then listed Novantrone.
 
He said that any one of the drugs might work for my husband and we have no idea which one might work. He said even though there may be a 35% chance of a drug working, my husband might be in the 65% in whom it won't work or vice versa. He laid out some pros and cons of each but said it is really up to us because we have no idea which drug might work for my husband. He did say that the first five have less serious risk but they also have a lower efficacy (chance of working). He said that Tysabri has a higher efficacy but with it you run the risk of getting PML.

I will say that I am leaning towards the Tysabri now after reading the patient comments and testimonials. If you ask my husband, he will say he is just ready to do it now! He does not want to wait around for the next lesion. Please pray with us that the Lord's will will be done concerning the treatment. I completely trust that He will build walls where He does not want us to go and He will protect my husband from the PML if He allows him to take the Tysabri and He will provide in every way for whatever path He has chosen. He has a perfect plan and in that plan there are God-scheduled opportunities along the way. We just have to see them as God-scheduled opportunities and nothing else. Dr G. did say that he does think we should try aggressive treatment first but that we can always give one of the less risky drugs a try first too because it just may be the one that works. He said it is completely whatever we feel comfortable doing. I say it is whatever the Lord leads us to do. Please be praying about the treatment with us and everything that goes along with that.

There is one funny thing from a couple weeks ago that I forgot to share with you. After we left Dr G.'s office the first time we met him, on the way home I asked my husband what he thought. He sat there for a few seconds and then said basically this: "You know when we saw the neuro-opthalmologist at [a hospital that shall remain nameless] last year? Well, seeing Dr G. was like seeing him." (That was Dr H. He was very thorough and tested my husband in many ways with lots of equipment.) He then said, "Well, seeing Dr O. is like going to the optometrist at Wal-mart." I laughed and laughed, and yet I was blown away by the profoundness of that statement coming from my currently communication-challenged husband!
Thank you so much for listening to me and praying for us and sending encouragement and everything else you do. We are truly blessed in many ways. Until next time . . . . . .
 
 
Please keep my dad in your prayers! Right now he's having a tough time. He gets sad a lot, and he's really having trouble understanding us, which frustrates him. Everyone is very emotional right now, and sometimes we feel like giving up, but God has a purpose for all of this. I used to be scared of what might come, but I've learned to trust God. I'm not afraid. Even though I don't know what tomorrow might bring, one thing I do know is God will be with us all the way. And it's such a comfort to know that. :)

18 Greetings from Elven Friends

Hope Marie said...

I'll be praying.

Izori said...

We're praying REALLY hard for your dad and your family. I'm glad God has given you a peace about things.

Nela said...

I'll be praying for your dad, and I do admire your faith! ;)

Elizabeth Rose said...

I'm praying for you, Eldarwen! I hope your dad starts feeling better soon.

Love you!

In Christ,
Elizabeth Rose

Katherine Sophia said...

Thanks for the update! I was just wondering today how your dad was doing. Praying for you all!

Cornet Crazie said...

Oh Eldarwen... :'(

I don't even really know what to say. This must be so very hard on your family, but the Lord will guide you through. (And you've got us too!)

-Cornet Crazie

Finding Faith, Purple Rain, and Talking Cows said...

Prayin for you guys! Keep being strong!

Stephanie said...

Keep you all in my prays1

Steph

Katherine said...

Amen!G-D is always right along with us. Blessings and Prayers
Katherine

♥Bleah♥Briann♥ said...

I'm praying for your dad! :) I know he's gonna be just fine. I mean I still haven't met him have I? See... he's going to be just fine! :)

LOVE YOU GIRL! I'm here for you if you need me.

Love,
Bleah-Bug

Lindsay said...

Awww, you know we're praying, Eldarwen!!

{{Hugs}}
Lindsay <3

Elizabeth Rose said...

Hello Eldarwen!

For starters, let me just say, I have received comments before advertising this giveaway or that blog party... and it can be extremely irritating. So, you have every right to ignore this comment. *wink* But, I would like to politely inform you that Jo March over at Scraps From My Workbasket is doing a TON of giveaways, blog parties, etc., starting October 1st, on her blog. And, if you are interested (and if you follow her before October 1st!) you will get an extra entry into all the contests and giveaways that are going on. So please check it out! Here is the link: http://scrapsfrommyworkbasket.blogspot.com/2010/09/let-party-begin.html. And if you decide to look into it, please let her know that Elizabeth Rose from Living on Literary Lane sent you. Thank you so much!

Love,
Elizabeth Rose

Miss K said...

I'm praying!!
KyAnn

His Handmaidens said...

Still praying...

MONKEYGIRL1 said...

Eldarwen,
I have tagged you!!! http://afarmgirlramblings.blogspot.com/2010/09/tagged-again.html

Anne

Hope Marie said...

I awarded you go to www.rejoiceinhisword.blogspot.com to check it out.

Anna Gray said...

I will be praying.

Zoe said...

I'll be praying for you and your family.