I am a 33 year old mother of an 16 month old son...I was misdiagnosed in 2006 and 3 weeks after having my baby found out I have a Very Rate cancer called myoepithelial carcinoma...at the present time I have been told there is only 2 cases in the world! Therefore, they don't know much about my cancer...I traveled to Md Anderson cause drs here in Louisiana said they didn't know enuff and referred me to Md Anderson...was in clinical trial on Medicaid, but was finally taken off trial cause I was throwing up blood in which they put a scope down my nose into my throat and into my stomach and another scope down my throat into my lungs...from the pregnancies the hormones made the tumors grow like wild flowers...went from 3 to almost 30 now and 3 internal...one in each of my lung and one by my heart! I watched my mother & father get shot in front of me when I was a young child...only 2, my mother lived, but my father passed away...I know the pain and suffering losing a parent can and will cause...been there, done that & I want so much more for my child! He and I have a VERY special bond...I am w/ him 24/7...well I couldn't afford to continue to go back in forth to Md Anderson and in the beginning I was staying w/ my moms brother, who eventually moved cause of wrk reasons so we was then staying in hotels and like i said, it became too expensive and I still had bills back at home in Louisiana...now I'm taking a turn for the worse...I went from 3 chemo drugs to 2, now I'm down to one...had bad reaction to the doxil, then now the avastin has caused me to have sum type of syndrome to where I now have a hole in my kidneys and I'm peeing out 3 plus protein and losing all electrolytes...such as potassium, magnesium, and calcium...so now my dr cancelled my other chemo torisel for a few weeks and I'm waiting to get another pet scan this week Jan 27th, 2012...the kidney specialist is VERY concerned cause he just got a copy of my labs from
Chemo dr and said that my potassium is so low, it's 2 point something and if it drops a few points lower my heart can fail and incan
have nerve damage/problems...so instead of getting the torisel this past Thurs. my chemo dr gave me potassium etc thru my port AGAIN...we just did this few weeks ago and when I returned few days later it was lower than before they gave it to me thru my port...so he tried it again, and also tripled up on my potassium pills and doubled up on my magnesium and calcium pills! My kidney specialist sets up to go get an renal ultrasound of kidneys Wed at another hospital and also wants me to do a kidney biopsy and last thing he wants me to do a 24 hr urine collection and keep container in a styrofoam ice chest and then drop off st lab following day! I am
Swelling Sooooo bad! First it started w/ feet/ankles, now it's everywhere...primary dr told me to try compression stockings & to keep feet and head elevated, but no luck...been going on few days before X-Mas Eve( the swelling & only getting worse)...I can't work, I am now disabled and the amount of my check doesn't even pay the rent! On top of that I have a 16 month old son! He is my works and I try my best to not let him see my suffer or b in pain or even cry from all the stress and worry! As much as I've been thru in my life time, this is BY FAR THE HSRDEST THING I'VE EVER HAD TO GO THRU! I've asked so many ppl to guide me in the directions to get sum type of help/assistance...I can't lie, the cancer center have me a gas card once to help me get to MD Anderson! I just know there has to b more out there to help ppl in my situation! I feel like my time is limited so I'm trying to spend as much quality time w/ my son as possible, but lately I've been in drs offices trying to get referrals to even get into a new cancer center cause I can not afford to go to MD Anderson, abd my primary dr already put calls into West Jeff, Our Lady of the Lordes, LSU, Tulane, but they all say there's a problem...they don't take mecicaid, or if they do take it, they already took the limit they can accept, it's always one excuse after another...I've already been on the news w/ Mr. Dennis Woltetine in hopes of finding a dr abd letting ppl know we set up a donation acct at any capital one bank and all they need to do is go to any capital one branch and tell them they would like to donate to Crystal Raines-Slaughter donation acct. That acct has only $12 and so many cents in it right now...my medical expenses aren't cheap when certain test aren't covered by Medicaid and then travel expenses, such as gas, hotel, food, parking etc. what money we did get helped out and I was sooo appreciative, but it just didn't last! That was like a year ago! Now searching for something for anything that can help me! I want to live! I want to raise my son! I'm NOT ready to die!!! My primary dr called me few days ago and said lets keep our fingers crossed cause she's been trying to reach this certain lady over East Jefferson Hospital, which is now affiliated w/ MD Anderson so they faxed over sum release papers in which I quickly signed & they faxed back...now I'm just waiting & praying that they accept me...she already sent over sum of my paperwork! I have to go to ER first thing in a.m cause the swelling is getting so worse, I'd hate to die b4 I get into this hospital! I have a good feeling bout this one! PLZ pray they accept me & if u know of ANY programs, grants, anything that can assist me right now while cause having too many complications and so weak and I'm he alone w/ my 16 month old son all day, everyday so it's hard for me to do much research! That's y I'm up at this time in the a.m right now cause once he's up at 7:30, it's all about him! I can never find time to do much researching for any assistance...may it be w/ rent, utilities, food, diapers, clothing, gift cards, grants, help w/ cancer expenses that add up soooo quickly, hospital bills cause Medicaid don't cover everything so I have to make payment arrangements, and help w/ certain test that Medicaid don't pay for like the pet scan that I'm bout to have to get again on 27th of this month! That alone is almost $3,000.00! PLZ if u know of ANYTHING, pass the info to me...I greatly appreciate it! My email address is firstname.lastname@example.org Also I know they say don't say ur real name, but I truly believe in good ppl out there and if they don't know
of any info that can help me, maybe yall can spread the word about the donation acct at any capital one bank...I already listed my name and explained how it works...u can also goggle the story by Dennis Wolterine think it was channel 6 or 4 New Orleans Louisiana news...u can actually see my previous baby boy too! He was only like 3 months old then and it was also published in the Slidell local paper...front page! There's 2 diff Slidell local pages, it's not the Slidell sentry, but the other one...I wanna say Slidell Star...my memory is really terrible cause I have 2 tumors on my head and the rest r all over! It's now metastatic! I am married, but my husband hasn't been able to work cause I can't drive and he has to drive me to all these appt's! It's been so rough! PLZ if this has touched u in any way, PLZ help us so we can get ourselves back on track and not have so many extra worries! Thnx again & may God Bless!!!