Journal

Well I haven't been on here much since July.  Sorry if any of you were worried.  I'll try to give you all an orderly update now.

On July 23rd we went to a new doctor whom is a liver specialist in Pittsburgh.  We liked him immensly.  He spent about an hour and forty five minutes with us.  He was very upset about the way my daughters tx was managed & actually implied that we should report her previous dr. to the medical board.  However he feels that approaching tx in a different way may work better for her.  He would like to use the original form of Interferon, which  would be injected daily along w/ the Riba.  He feels that this would help her maintain a more even consistency of Interferon in her system, which would be more effective & hopefully not injecting the large amount once a week, would help prevent wiping out her white & red blood counts.  He was upfront with us and informed us that this form of tx could be extreme & she might end up bed ridden, but he felt the end results would be better.  He also talked to us about how other things could effect the effectiveness of tx, such as diabetes, thyroid function & anemia.  He said that she should of been tested for all these things before initially starting her first round of tx, but he could not find any records of her previous Dr. doing so.  So he ordered a whole bunch of blood test & would see us in a month w/ the results & to find out what we had decided to do. 

My daughter was frantic at the thought of having to do tx again, she absolutely refused to do so.  I can't blame her, the past 5 months had been a nightmare for her.  We also supported her decision because that by the middle of August her blood counts, although getting better, were still very low & physically she was still weak & tired.  It was obvious that she wasn't physically strong enough to go through another round of tx at the time, let alone that being mentally prepared is 1/2 the battle & she wasn't able to wrap her mind around doing so again.  The doctor also felt that it was the right decision at the time, although he also stated that the Hep C seems to be very aggressive in her & that when the new tx comes out in 2011 (hopefully) she should absolutely be prepared to do it.  Without beating this, she has 5 to 10 years before she will need a liver transplant, so she must try tx at some point again soon.

We thought maybe life would get back to normal now.  But instead it has crumbled around us.  As hard as it was for my daughter to go through tx, I had hoped maybe she would take some positive things from it, such as realizing how strong she is, or that there are other kids out there in the same boat as she that she could mentor & help.  However she has bent her mind in the opposite direction & decided that if she only has a few good years left then she can do whatever she wants.  Every day is a batlle with her & she seems determined to be defiant against us, the world & all the burdens this damb disease has placed upon her young shoulders.  All the defined lines & rules that we used to have drawn out so clearly in our lives have been blurred by this damb disease.  Whereas we know how to be parents to a well child, she is a different story now.  We should be planning on her going to college, but when in just 2 months of school she has already contracted strep throat, HN1 & is so tired & worn out, throws up all the time, we don't see how she could possibly manage college. Just getting her through her senior year & graduated seems like a battle.   Her health also pretty much prevents her from getting a job, so money issues & her vehicle are a big fight between us.  If she was well we would make her get a job which would give her some responsibilities, money of her own & fill up some of her time.  As it is now, she is hanging with a new group of friends who are "shady", thinks we should keep her vehicle maintained & buying cigs (etc.?!?!) with money we give her for gas, constantly lying to us and defying any rules we set for her.  She actually left home for a couple of weeks.  However she is now home & her car needs new tires & inspected.  So therefore she is stuck & we have gained a bit of the upper hand on the situation until she can come up w/ the money to fix her vehicle.  We are worried sick about her, her moods are erratic & extreme, she no longer cares about her appearance & her grades in school are poor to say the least.  She refuses counseling, however I am working on that.

As for me, I quit my job of 13 years.  I ran a business for my parents & with my daughter & I being ill & my parents not even acknowledging it & actually trying to dump more responsibilities on me, it just became too convoluded & stressful.  I had to just walk away from it all to preserve my sanity.  It was a big step for me & is a bit overwhelming being we have basically now have been exciled from my family & also the loss of income at a time when we have tons of medical bills to get paid off & the holidays are coming up.  However my husband fully supports the decision & although things are hard for us now, I know I am on a better path.  For the last 2 years I have felt that life hasn't been worth living & I could no longer go on that way.  For the first time in my life I am taking time for me & having faith that I will be led to something better. 

On Monday I go to my first counseling session ever.  Between my daughter & I's illness, quitting my job, my daughters revolution against life itself & trying to find my way through this mess, I feel like I have a million peices of shrapnel floating around in my brain.  Hopefully counseling will help me sort it out & find more productive ways to deal with all of this.  Also maybe it will encourage my daughter to take the step.

Yesterday I actually attended a Hep C support group which just opened up.  It is small right now, but once we get the word out I think we'll get alot of people.  It was wonderful to talk to people who understood what we have been through & the problems we still face.  The guy who is facilitating the group is 24 & just completed tx this week.  I am hoping he will befreind my daughter & help guide her.  She did not go to this session because it is in the morning & she has school, however in a couple of weeks we are hoping to change the group time to evenings & she is anxious to be able to go.   I must say that on my drive home from the support group, tears just started running down my face.  I realized that I haven't actually talked out loud about what we are going through to anyone before, other than my husband, daughter & docters.  And for the last few months I have just been keeping it all locked up inside & hidden from the world.  Our bodies are sick & our hearts & souls are broken.  Well now I'm finally facing the music & going to find ways to deal with this.  I'm marching down a road totally foreign to me, but I have a good feeling about where it might take me!

On Monday my daughter had her appointment with the blood specialist.  Her blood levels were o.k. (not back to the normal yet), so she didn't have to get any shots.  The doctor said things should continue to improve now & changed my daughters schedule to coming in every other week for blood test, for 4 weeks & then if everything is good she will only have to go in once a month.  After practically living there for the past 3 months, this is such a huge relief!

My daughter is improving rapidly now.  She has alot more energy, we went to the Cleveland zoo on Tuesday & then to Pittsburgh for a college interview & then did the Ducky Tour & rode the incline on Wednesday.  We were both whipped, but beforehand she wouldn't of been able to do either of those things.  Her appetite is also improving, her gums & mouth are finely healed up & she isn't having as many nose bleeds.  So all is improving!

Next Thursday we go to Pittsburgh to see the new liver specialist.  I doubt that we will gain much from doing so, as we have been told that all the clinical trials for the new tx are now closed.  So as far as getting her treatment, I think we are going to just have to wait until it hits the market.  However we are shopping for a new doctor, so we hope that we like this doctor better because we are not going back to our previous one .

This was the first Monday in next to forever that my daughters blood test results were good & she did not have to have any shots for her wbc or rbc!   We were over joyed!  The blood transfusion obviously helped & hopefully her blood count levels will continue to rise now.  The last time she had a blood transfusion, when she was still doing tx, she still had to have shots the following week.  It seems obvious that being off tx that the blood transfusion would help & that she would continue to get better.  However we have learned not to get our hopes up because nothing during all of this has gone as expected.  But thank goodness, this time it seems to be!  We are very happy!  Next Monday she has an actual appointment with the blood specialist doctor, so maybe she will be able to give us a little more insight into how long it should take for my daughters blood counts to get back to normal.  But for now we are happy that she had a week shot free!