Wednesday, September 3, 2014

Ice bucket Challenge CCFA TAKE STEPS

So I have been contemplating this topic for several nights.  To the point of tears and just praying for my brain to shut of so I could sleep and not think of it anymore.  Last night was the worst.  So I am a Mormon and we rely heavily on the Holy Spirit to guide us and last night I felt it so strongly that I needed to do this.

So first of all, let me say to those of you that have supported us through the years of these fundraisers, THANK YOU!  We've come a long way, CCFA research has come a long way.  Because of your support there are great meds, some of which Isabella is taking, to stay healthy and strong.

NOW my soap box, Momma Bear side.  I feel cheated.  Defeated, maybe a little betrayed.  Why?  you ask.  Because I have been trying to raise money for Isabella's walk for several months and we are just inching along, not near our goal.  Which isn't out of reach.  Then last month there was an explosion of donations or supposed donations made to ALS through the ice bucket challenge.  Time after time I would see family and friends posting their videos of their 'challenge' on Facebook.  Those family and friends that I have repeatedly but not singled out asked for donations for Isabella's walk.  Who have not.  Why?  I don't know.  Some I know were for personal family member tributes but some?  Was it because someone challenged you?  Do I need to challenge you to dump ice water on your heads and call you by name to get money from you? 

Now before you get all defensive.  Some I know did donate, and some just did the ice bucket to raise awareness.  I understand the  difference.  So for those of you who donated to that but repeatedly didn't for B?  That breaks my heart.  I want to say how dare you and that's not fair and kick and scream to get your attention to help my beautiful daughter.  BUT I won't and it probably wouldn't help if I did.

So here it is 11 days before the walk.  We need your help.  So let me put it to you straight and maybe add a little reality to the situation.  Isabella is 12.  She was diagnosed at 9 with Ulcerative Colitis which is a disease that eats away at your Colon, leaving ulcers, bleeding ones.  She was 8 and having symptoms.  NOW at 12 she is better but we are always optimistically cautious.  We know what could happen, we've seen it with friends.  The meds could stop working, we could be worse again.  Let me take you through a day for her.  She gets up, usually the first one, goes potty does her thing, before we leave she goes potty,  before we go anywhere she goes potty.  If we are at the pool and has to go potty we come home to go potty because face it taking a wet suit on and off all the time is a mess and then it needs to be adjusted.  If we are traveling she tells us in plenty of time she has to go potty.  BUT if she is sick, like last week, she had strep, she got an infection which made her miss the potty, STUPID DISEASE.  So she takes meds at night every night, she potties a lot!  Then on nurse day she drinks tons of water, like a gallon,  she comes home after church, takes a shower, puts meds on her arms, we wrap her arms in plastic wrap.  She worries, gets anxious,she knows there are probably going to be lots of sticks.  In 14 months, we've only had 1 successful stick!  Then the IV drugs are administered.  That is what keeps her healthy.  So if you think she doesn't need your financial support she does.  If you think looking at her all is well, well of course she has awesome drugs.  But wouldn't you want you kids to NOT have to take drugs if they could.  I sure wish mine could.  This is her life and it will be unless we get a cure!

SO now my CHALLENGE to all of you, donate!  Donate what you can, if you donated to ALS then donate half of that amount to Isabella.  really I'm not asking a lot.  Just be fair, don't forget her.  You see her at school, at soccer, at church.  She looks great but its because of the meds.  We need a cure so she doesn't need to be on the meds forever. 

So here is the link.  You can donate to Isabella Fratangelo or 'The B Team'  http://online.ccfa.org/site/TR?fr_id=4337&pg=entry

Now I'm done.



Friday, June 14, 2013

WE {B} NEEDS A CURE

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

Isabella {MEANT FOR GREATNESS}

http://online.ccfa.org/images/content/pagebuilder/take-steps-logo-206x84.jpg
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.

Friday, May 24, 2013

SUMMER VACATION DAY {1}


Normally this would be a great day but from two PM til now almost 5PM I am thinking to send them back to school.  Let me tell you why.

This week Rob, Cole and Isabella has been sick, so Isabella missed the last two days of school and I snuck her into school the last hour of the last day to let her say goodbye to her friends.  When she got her report card I noticed she was absent 19 days not counting the last two.  That is another story.  They all had a bug, 24-48 but because B is in a flair, for 10 weeks now, it is taking longer for everything to get out of her system.  So that is her, for now.

I feel like I am three weeks behind in everything and I haven't been to the gym in that long because of end of school activities and appointments with the kiddos, mostly B.  So this week I finally cleaned the kids bathroom, well because they were puking, and yesterday I cleaned the kitchen up.  Also today I decided to give each child a job that they have to do everyday through the summer.  Also they have to run laps outside if the argue or talk back to me.  So far today both Cole and Gus have run 4 laps.

AURGHH, is how I'm feeling right now.  Today I went to the dentist, I now have braces and I had my first check up.  We made strawberry freezer jam.  And I took B to the Dr to see what was up with this fever business.  The problem is I'd hoped to have so much more done by now.  Like take the dogs to the vet.  Its hard taking two dogs and three kids to the vet.  Also I wanted to have the pantry a little more stocked.  OH well maybe next week.