Friday, June 14, 2013


So today was her first REMICADE treatment at the outpatient center at HH.  It went well all her readings were good. 
 It was long SIX PLUS HOURS LONG.  But if it works it's worth it.  The price is stagering though.  For an out patient visit for this proceedure, DR. M said $20,000.  I asked our nurse and she said she didn't know for sure but other patients mentioned it was anywhere from $20,000-$40,000 PER TREATMENT.  Are you kidding me?  Really?  YEP and our precent is 15% everytime, she has a treatment.  

SO, good thing I never booked those trips this summer.  They will have to wait and the van upgrade,  we are driving this baby into the dirt!  And because of the furlough our belt will be tight this summer.  

The one thing I'm thankful for is the Hospital doesn't want our money today and we can do payments.  We'll make it, we've done this before.  So if you have a $5 bill hanging around or want to join our walking team in September.  You can sign up here.  add Isabella Fratangelo or The B Team.  We need all the support we can get.  We need a cure.  The more times it doesn't work the fewer the options are.  We are almost to the end of options.

I know that Heavenly Father is watching over us and especially Isabella.  No matter what our family is forever.  That is what I know.  We have this connection.  Its all good.

Wednesday, June 12, 2013

Where do I start.  Last week, three months ago, two and a half years ago?  She is meant for greatness.  She is strong, only seldom does she show that she is scared or uncertain.  I on the other hand am grateful for everyday I have with her, with all my children, knowing that right now is all I have.  Maybe that is why I haven't blogged so often, for me my thoughts are not fluent, I'm not an eloquent speaker and my thoughts are often jumbled.  I definitely am not a fast typer.  So as I'm writing this, B is watching Jesse, C is off to test for his white stripe on his green belt and G is passed out on the couch.

It has been a busy few months.  Back in January B started having tummy pains again but didn't say anything for several months.  March rolls around and she tells me, Dr thinks its acid reflux, prescribes meds and we are on our way, I tell her to tell me when she is having tummy pain.  It seems to increase with frequency and then March 22 she woke up with diahreah and blood in her stool.  Call the Dr on call and he puts her on Prednizone and we call back Monday, continue prednizone for two weeks and things seem better, blood stops, diariah continues, we switch to enimas because B prefers that, she hates the way the steroids make her feel and its not a bit its a lot like 60MG a day.  Do that for three weeks still blood and diareah...its confusing some days we think yay its getting better then the next day diareah and blood.  FIVE weeks out and still not stopping, is this normal, we haven't had it this bad since we were diagnosed two years ago.  Beginning of May, Dr says lets do blood work and a second endoscopy and colonoscopy.  OKAY, things look questionable, can definately see were the enima worked, but then there is this big mess on the right, looks fishy he says, he keeps talking and he keeps saying, it could be crohns, I don't think its crohns but it might be but lets check it just in case, but I don't think it is.  CRAZY right all I hear is CROHNS and I'm like NO, so they biopsy it and it came back inconclusive so we now have to go for a CT scan and while there the tech asks why we are here and I'm trying to skirt around the real reason because I don't want to upset the B, I finally come out with it and B looks at me and says what I didn't know Dr M thinks I might have crohns.  It goes and we do the tests and it comes back negative, yay no crohns still bleeding diareah, going on how many weeks, I don't know(I’m not that good at math), so Dr M puts on entocort another steroid, supposed to do the trick, three weeks later, B is out of town on a trip with her Nana to the smokies...calls everyday, sounds tired but says she's having fun.  Comes home, that night has tummy pain bad, it hurts I can tell and the next morning BLOOD, bad, colors the toilet water red bad.  I call Dr M and talk to Nurse S we are back on prednisone  and she schedules us to meet today, whew are you caught up now.  So twelve weeks and three days later, we are scheduled to start a new treatment, remicade and a 6mp pill they work together to stop the flair and keep her in remission.  There are many side effects and a higher rate of cancer but just having this disease does that.  Remicade is a drug given in IV form.  Her first dose is Friday morning, then she'll have to go back in two weeks and then four weeks later.  Then every eight weeks.  The first dose will be in the out patient center at the hospital, then we will set up with a home health nurse to administer the meds at home.  This will be an expensive therapy, the drug is covered but the treatment is covered like a hospital visit or by presentage, so we'll be tightening our belts, again and hope for the best, this could be good for a long time and maybe when it doesn't work anymore, because there will come a time when it won't, hopefully there has been enough research for a new better drug to help her live long and happy.  She is meant for greatness! 

So if you'd like to help.  CCFA has a walk every year in almost every community across the country called TAKE STEPS.  PLEASE HELP FIND A CURE.  Donate to Isabella's team.  Her team name is The B Team.  please whatever you can help with would be appreciated.