Can't Cope Anymore...Need Help :(

[TravelGrl]

As most of you are aware, my 15 year old daughter is 1B, stage 4 and has not responded to any treatment so far.. Contracted from me at birth. Currently on daily infergen, don't think she is responding to this either...Already tried Pegasys and Peg Intron with little success. We are thinking of adding zadaxin to this or to Pegasys next. I am going crazy with worry. Don't know how I am coping any more...She just dosn't get a break...I need to find something that will work...Her albumin is slipping below normal now which probably means her liver took a turn for the worse even with this past 52 weeks of treatments. Any information you could provide about new treatments and when they will be available would be great. You all have been my hope and inspiration this past year.  
Thank you,
Jodi

[TravelGrl]

Just want to say thank you. After reading all of your wonderful responses, I just sat here and cried.  Once again, don't know how I would cope without each and every one of you...
Thank you all so much for being here for us.
Jodi & Amanda xo

[fullofhope]

As I was reading your posts and those that followed - I was thinking about how hard it was at times to be your daughters age.  Just dealing with the normal everyday "teenage" things was hard enough.  The typical scenarios of boyfriend/girlfriend, homework pressures, practices & games, relationships with friends that go up and down daily - what-have-you. Sometimes I wanted to shitcan the whole thing and give up.

I cannot begin to express how amazing I think your daughter is.  In spite of the additional MOUNTAINS she has had to scale - she pushes herself to do all the normal things and not seclude herself whenever possible or deny herself from being a typical teenager.  

There is a strength in that girl of yours that exceeds boundaries for a person of her age. Maybe it is because of the HepC experience - who knows, but I am guessing she was born with it.  I am sure she has taught many of us on this site and everyone she comes across some important lessons - lessons of endurance, perserverence, commitment and pride.

What I wish for Amanda is that she never gives up hope - never loses sight of the goal and always remains the wonderful person you brought her up to be.

I will be praying and thinking about Amanda and hopefully in doing so I can lend her some of my strength.  God is here and he is watching - and if anyone deserves a break it is Amanda.

[Foreign girl]

I was out of town and just saw your post. I am very sorry nothing is working at the present time. I am hoping that although your daughter did not have a substantial drop in her viral load her liver is improving anyway. My doctor mentioned to me that his office will be involved in a new promissing drug trial. I will find out what the name of this drug is and will e-mail you.

Foreign girl.

[cc2]

Hi Jodi,
Words can't say enough on how sorry I am to hear she is not responding.  My prayers are with you and Amanda.  I have heard there is several things in research but your most likely looking at five years.  Try doing a search for the best clincs or doctors for Hep C, on the net, to see what hits you get and also the best hospitals/doctors for transplants.  You may never need the hospitals or doctors for a transplants, (for I pray she responds) but I would start getting information and knowledge on the subject.  My heart goes out to you both, and I send you a big hug.

[latrobe]

if i can bring my  one true friend --a cat named gibson--i'll be there. i'm relieved to hear that amanda is doing  okay--i reaize she can't understand what's happening in her young body.  watch some stuff on st jude's hospital.     i  live in durham, nc--the city of medicine---if you need a home here, you've got one...
i live a fairly frugal life, but we can work it out.

thrive --you.  just thrive.
-macky

[TravelGrl]

I wish I had all of you by my side right now...(literally)...

Thank you again for all your good wishes and support.  You have no idea how much it is needed right now.  

Amanda continues to be her normal teenage self.  Happy (most of the time).  She knows that the meds are not working the way they should, but continues to believe she will be fine..

Yes, she is still cheering...but wear and tear is definitely setting in at this point. Her hair is thinning and she gets very fatigue, but its not stopping her.  

We will not give up...ever...until we find a cure. I am exhausted, trying to keep a happy face on all of the time, as not to worry her is really wearing on me too.  I am talking to a counselor now, which helps a bit...but nothing like talking to people who are living it with me...All of you...

Once again, I thank you all from the bottom of my heart for being here for us...

Jodi

[sbluitt]

by the way, if you need to talk, contact me at s.***@****

  it helps to borrow strength from someone until you get yours up.

  I know, I did alot of borrrowing

[Jim55]

Damn!

[shebee]

Good Morning, Jodi,

Please speak this to yourself...so you can hear it instead of just read it.

I can imagine the stress that you are under at this time.  Today must be unbearable for you both.  I am so sorry that Amanda is having such a tough time.  Life is so unfair sometimes.







So, what do you do when you are at your end?








(I usually give up...at least for a day or two.) LOL!







As a mother, you do not have an option of being at your rope's end.  Ever.    Unfortunately, you just have to get up, and keep on moving.


I have been at this place many times during hubby's TX.  I have sat before my computer many times, overwhelmed, and with tears streaming down my face.  (...And I don't cry.  LOL!  Hey, I really don't. )  It is so devastating to do everything that you know to do, and then, find out that it is "not enough."  

All of us wish that we lived close to you. I personally would come by and leave you dinner...or pick you up and take you to breakfast, lunch and dinner.  By the way...If you ever need anything in the Kansas City area, I will be here for you both.  I mean this.



Sometimes just stepping back for a while helps you to obtain a new perspective. When is the last time that YOU stepped back and gave yourself a rest?  When is the last time that YOU last sat in the park and enjoyed yourself?  Sometimes without really knowing when it happens, we can find ourselves not having Joy in life.  Some weeks I lived from one blood test to another...watching every little sign for improvement or signs of decline.  I must admit, that I was so involved in hubby's TX, (and so sad,) that I forgot to still find joy in life.  This makes live extra hard.


My whole world has been turned up side down, as yours.  It is very unsettling.  It is very difficult, after being a stay-at-home mother, to propel myself back into the working world, knowing that at this time, I will be the sole breadwinner for our family.  (Do you know how much these people eat?????? LOL!
...And me, while they have been stuffing themselves with wonderful food, I have been dieting!  I ask you, "Is that fair?"  Of course, I might add that I am looking good.  :)

Anyway, after feeling sorry for hubby, my family, and myself, I took two days putting together a very unconventional resume.
The next day I applied for two jobs in areas that I had never worked in before.  (Was I just gusty or just plain stupid?)
I decided that my family needed lots of money, and if I had to work, I should make a lot, eh?

God was very kind to me.  I was just going to drop off my resume (late in the day) and go home, but was interviewed on the spot at BOTH jobs.  I got both jobs.  What are the chances of that ever happening?  

You see, I believe that God has been walking before me, making a path.  All I have to do is try to stay on it. I might add that I don't really like this path at all!  But, what do I know?

My circumstances seem overwhelming at this point, as yours.
If we could only see the "bigger" picture, it would be so much easier.  However, that is not how life seems to work.  We have to live one day at time.  (ya,ya, how many times have we heard this?   ....hummmmmmm....how many days do we do this?)

There are so many of us that continually have you and Amanda on our hearts.  Don't get discouraged.  Just keep on going forward...even if it just a baby step...even if you are at a crawl, you will get there.  Just keep on doing what you know to do, knowing that God is walking before you and making a path.

With all my heart,
Shebee

[sbluitt]

YOU are at your wits end.
  YOU can't cope..

   Don't....believe for GOD to help you. It is not more the HE can handle..not by a longshot

  I klnow, I ended 48 week treatment 3 weeks ago, and am pushing through recovery to get my previous life back , and more.

  You can't in and of yourself do it.

  You don't have to...use HIS strength.

[ghille]

Jodi,

I am so sorry to hear Amanda is not progressing. As with everyone else, I wish there were to more offer than words. How is Amanda feeling? I still think of you often and I send my thoughts, prayers and hugs.  I can't tell you how much I admire you both.

Sally

[mikesimon]

I too have no real ideas - just sadness that things aren't going better. Mike

[whybabe]

Dear Jodi:  Words seem wrong right now...So just a moment of prayer...Everyone in your own way stop right now and reach out to this famiy.  The power of prayer and positive thinking is real.

Jodi,  I think of you daily and you will continue to do what you have to to get through this.  Amanda will KILL the dragon!
God Bless,
Deb

[newgirl]

I so wish that I had the words to help you...I wish that I could take your pain and wash it away.  More than anything, I wish that Amanda was better.  She is a strong, strong young woman...her spirit comes out so vividly through her mother, it is difficult for all of us to hear this news.  I am not sure if prayer can give birth to miracles, or if God has his own plan yet undiscovered for Amanda.  What I do know, is that Amanda is a resilent and courageous little lady who has a mother that will stop at nothing to see a smile on her child's face.  Those are powerful ingredients.

Amanda will get through this, I truly believe that she will. Please know that you have love and prayer coming from the four corners of the world.

[Eyedeas]

Having treated and relapsed, I followed it up with a heart attack 2 months after stopping treatment.  Perhaps what she needs is a breather.  My docs have me on a hiatus from any treatments at least until the end of the year.  We may or may not treat then depending on exams and what's available.  In the meantime I still have the RA symptoms am hypoglycemic and somewhat moody, but mostly feel okay.  I've made apoint of not stressing out this year.  Hang in there both of you.

Kim

[MajNeni]

Hi, Jodi,
I, too, wish you a turnaround in Amanda's illness and tx.  As a mother I know how much this is tearing you up, and it just seems to go on and on without a break.
Jodi, don't forget to try to take care of yourself, too; they all need you.
I'll continue to hold you and Amanda in the Light.  
Maj Neni

[DownThisRoad]

Jodi, I have tears in my eyes as I read this on a rainy Saturday evening. I wish there was something I could say to make something, anything better for Amanda and all of us who are fighting so hard to rid ourselves of this disease, but I can't find the words right now.

With a mother like you, Amanda will never give up. She has continued to stay very stong, probably stronger than most of us on this treatment.

Keep Amanda's spirits up and have her give you a hug.

[doll face]

Jodie hang in there, You have always been so positive Don't stop now. I wish that I could help ease your worries, but I do send you a special prayer. How is Amanda coping with this latest news. Please be strong for her as you know only a mother can.

[Galen]

Jodie, I am so sorry that Amanda and you continue to face setbacks.  I wish there were something I could offer to you, but you do have my prayers.
Galen

[chicagogirl]

Let me comment on the worst case scenario for your daughter; a liver transplant.  My friend received a liver transplant 15 years ago and is doing really well.  She feels good and looks good.  My understanding is that the immunosuppresant drugs used for liver transplants are not as bad as many other organ transplants such as kidneys.  The research on these drugs is going absolutley gangbusters.  They get better practically every year.  Because my own teenage daughter is a Type 1 diabetic, and my sister in law has had a kidney-pancreas transplant, I know something about the topic.  The frustrating part is that your daughter isn't getting a break as a young person.  Eventually, the liver problem will come to a head and she will emerge as a fully functioning transplant patient who feels good again.  Again, a transplant is the worst case.  To be on the safe side, try to get her on a list at the first opportunity.

[giddyup]

I'm out on Long Island.I hope something opens up for you.I'm  getting treated at the Center For The Study Of Hep C at The Weill Medical Center.It's a joint effort of Cornell University and New York Presbyterian Hospital.They Conduct a lot of researdh studys There.I hope something comes your way soon and I'll definatly mention your situation the next time I'm there.

[Sunny 1]

Jodi, I'm so sorry to hear about this.  How does she feel?  Is she still cheerleading?

[Southernboy]

Jodi,

Please email me at ***@****.

Steve

[latrobe]

this is  so sad...i can't even begin to imagine how you're managing all this. it breaks my heart that she's not responding.
is she showing signs of the wear and tear?  seems like she's had a great attitude all along. i hope she's holding on to that. seems like you saw dr cecil, is that correct?  what about amantadine?? if prayers ever needed to answered this is a sure case,
i bet some one here will have some ideas about finding some resources.
i hope somebody is taking care of you, as well. i know how much you mean to so many on this site; i understand the hope and inspiration you find here, but be good to yourself.
best.
macky