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Dani's Birthday is 11-13-94
From her blond curls and beautiful blue eyes,
to her pretty smile and cuddlyness;
Dani was the baby everyone stared at in
a room full of babies.
She loved dress-up including high heels,
feather boas, hats and gloves (the little
girl every Mother dreams about having).
She was always painting her nails
or someone else’s, putting on makeup
and dragging baby dolls and
stuffed animals around.
As she grew, she became a great artist, a
non-stop talker and bedtime was always easy
as long as she had her thumb and a soft blanket.
She loved frogs, bugs, animals, riding bikes
and was a talented and fearless soccer player.
I didn’t know I would soon find out
just how courageous Dani was.
At 8 years old, Dani was diagnosed
with Biphenotypic Leukemia.
she went throught numerous spinal taps,
bone marrow aspirations, chemo,
losing her hair, counts being so low,
Pain . . . pure and utter pain,
a stem cell transplant, infections,
Chronic Graft Versus Host Disease,
the death of hospital friends,
losing weight, the loss of friends and
not being able to play soccer.
Then she battled AutoImmune Hemolytic Anemia,
transfusions, gall bladder and spleen removal,
mouth sores and so many staph infections.
Even after all that, she is still a loving,
compassionate young woman
ready to live life to the fullest. She is
the miracle child! SHE BEAT CANCER!!
She is a treasure; a gift from God.
Dani is the one at our house always helping someone.
she takes her little brother’s pictures and tells
them how cute they are. She plays with them
and they love her dearly. They say she’s the best
babysitter in the world. She wrote her big brother’s
homework down for him when his hand was broken.
She’s an awesome cheerleader, a tremendous student with
so much potential, and a loyal and kind friend.
I’m so proud to be Dani’s Mom!
Here's Dani's story and her long Journey and triumph over CANCER:
Welcome to our Child's Web Page. It has been provided to keep people updated about our daughter, Dani Kos who was diagnosed, at 8 years old, with Biphenotypic Leukemia on May 6, 2003 (Acute Lymphoblastic Leukemia AND Acute Myeloid Leukemia - only 5 percent of children have both). Dr. Michael Kelly called it High Risk T-Cell Leukemia (Cytogenetics tests showed the 12 P chromosome is missing part of the long arm and it did not translocate).
She was given chemo to fight ALL or Acute Lymphoblastic Leukemia. The Vincristine made her scream all night in pain and did nothing to fight the blasts. They called this a FAILED INDUCTION which is a bad prognostic sign. She was also given Daunorubicin (DNR), Asparaginase (ASP), and they injected Methotrexate (MTX) into her spinal cord to fight Leukemia in the brain and spinal fluid (there is a blood/brain barrier, but Leukemia can bridge the barrier).
Then she was given 2 rounds of chemo that fights AML Acute Myeloid Leukemia (this is normally an adult form of Leukemia so the chemo (I think Ara-C and Fludaribine) was much stronger plus the AML has a high incidence of relapse). She lost all her hair (beautiful, blond curls) and fingernails. After the second round of those drugs she was deathly ill and counts would not come up. Tim and I gave her Neupogen shots every day to bring up the counts.
She finally went into REMISSION in August 2003. As soon as they got her into remission, they wanted to do a bone marrow transplant. None of her brothers matched including her brand new brother who was born August 15, 2003. A donor from Germany was a match on 11 out of 12 antigens plus the donor had something in her cells that fights Leukemia. Also, the donor's blood type was A Negative and Dani's blood type was B Positive.
We decided to participate in a clinical trial for a Peripheral Blood, non-myeloblative Stem Cell transplant on September 16, 2003 (where they do not kill ALL of Dani's cells prior to the transplant and we did not have to stay in complete isolation for 6 weeks).
She had Acute Graft Versus Host Disease which was held at bay with Cyclosporine. After the 100th day, Cyclosporine quit working in January 2004 and then Chronic Graft Versus Host Disease STAGE IV ate the entire lining of her intestines (she was only 30 lbs at 9 years old, bleeding a liter of blood a day and in incredible pain).
They put her on a new drug called Tacrolimus (or FK506) only they gave her way too much. She had 3 seizures, spent some days in the Intensive Care Unit and was on seizure medicine the next 6 months. In February 2004 they said she also had CMV (cytomegalovirus)a dangerous virus that can activate in anyone and causes horrible cramps. They treated it with Foscarnet and Pentastatin for the GVHD, as well as, steroids and mycophenalate. My sister, Bambi came to visit one day and counted 7 different bottles/medicines on the IV pole going into Dani. One of them was Fentanyl, a pain killer that is 80 times more potent than morphine. The Dream Factory had scheduled Dani's Wish Trip to "swim with the dolphins," but it had to be cancelled; she was way too sick to go.
In September 2004, the Dream Factory re-scheduled her Wish Trip, but after we'd been there only a few days, we were evacuated for Hurricanes!
In February 2005 We finally got to go Swim with the Dolphins and visit Give Kids the World Village (gktw.org) in Kissimmee, Floria (created by a Holocaust survivor named Henri Landwirth. He has written a book called Gift of Life). It was an unforgettable trip of a lifetime!!!
She was fairly well for about a year and then the Graft Versus Host Disease flared up again (it causes intestinal problems, joint problems, skin problems, and eye problems)(She was getting physical therapy for her wrist joints until Matt Blunt made all the cuts to Medicaid).
On February 14, 2006 the Graft Versus Host Disease flared up causing AutoImmune Hemolytic Anemia (warm and cold antibodies in her blood that kills her own red blood cells). Dr. Michael Kelly moved to Wisconsin and sent us to St. Louis Children's Hospital where we met Dr. Shalini Shenoy. Dani was given at least 22 transfusions from February to March of 2006, pheresis treatments and the process still didn't stop. She had to have a drug called Retuximab for 6 weeks and her body was still killing red blood cells. She had to have her gall bladder and spleen removed and it finally stopped.
She had 4 or 5 staph infections in August/September of 2006. Then she suffered from these terrible mouthsores all through November and December 2006. Dani had a staph infection in January 2007, then in February she had a biopsy done on the mouthsores and they think the sores were a result of a virus. In March she had an MRI of her brain because of sinus and she had another staph infection (MRSA). Then in May she was admitted with a blood pressure of 30/19 with another MRSA staph infection. June 2007 she was admitted with Staph Aureus. In July 2007 she was admitted with MSSA (a resistant staph aureus)
In January 2008 Dani was admitted for the Flu and then Pneumonia. March 10 Dani was admitted for the Roto Virus, March 12 UTI Infection, March 17 admitted for a virus and released the next day, March 28 Walking Pneumonia and a Myclonic Spasm. May Pneumonia. August Conjunctivitis. September Chest Pain. October Virus and Herpes. November Chest Pain.
January 2009 figured out the Chest Pain was acid build up and cured with Pepcid AC. Most recently, she's suffered with Migraines for the last 2 months.
January 2010 Dani is doing great!!! Please vote for President Obama's Healthcare Plan as it will ensure Dani is not discriminated against (Republicans want people who have been ill to pay more for Health Insurance (Pre-Existing Condition clause). I've begun to call them the Nazi Party !! >She is the 2nd of our 4 children (and our only daughter). Dani has an older brother, Zach who is 19, and 2 little brothers, Luke who is 9 and Jake who is 7.
THANK YOU EVERYONE FOR ALL YOUR PRAYERS AND SUPPORT. Please know we appreciate you even if I have forgotten to mention it in the website. THANKS, TIM and DARLA
We'd love to hear from you - - Please sign the guestbook!!
Journal
Friday, November 9, 2012 12:56 AM CST We got to go White Water Rafting in June and it was so fun!!! Tiffany and Scott went with us and the boys were not scared at all. We plan to go back when they get a little older to a river called Ochowee in Tennessee that has 16 Class 4 Rapids.
Dani is in her Senior year of high school and is applying EVERYWHERE for scholarships!! She's finding out so much information like if you go for a doctor's degree and do NOT pass the M-CAT test then your degree is worthless. However, if you go for something like Biochemistry, then whether or not you pass the M-CAT, you've got a degree that will work anywhere. Then she questions whether or not she will want to be in school all those years. I told her just get through the 4 years and then you can re-evaluate what your goals are. She's passed the ACT with a 23 which I think is terrific, but she wants to improve the score to, hopefully, get a better scholarship. She'll be 18 soon (November 13th, but it was not soon enough for her to vote in the last election (Obama vs. Romney) which was a bummer because I believe she would've voted Democrat (Like her Momma). She's still dating Scotty and one day they were headed out on a date. She had on a t-shirt, athletic shorts and her hair just pulled up all crazy. I pulled her aside and said why don't you dress up. You have such pretty clothes. Scott came walking in the kitchen and overheard me and said I THINK SHE LOOKS BEAUTIFUL!!!! She got this darling little grin and they walked out the door. I'm saving that in my memory bank and Scott scored hundreds of points with me, not to mention, he Loves my roast!!!
Zach decided to go to Maryville College (a Division 2) college which was much more affordable tuition-wise. He always makes the right (very smart) choices. He made Captain of the team and has had SO much playing time, however, his back has really been bothering him and the team lost all but 2 games. He and Tiffany got a cute, little apartment she started Nursing school last month! Zach is getting a teaching degree and is aspiring to be an Athletic Director someday. He is learning so much and tries out what he learns on Luke and Jake (the latest tip is giving choices). I still miss my handsome little joker so much. What you work for their whole life (getting them independent) is also what takes them away from you. I may not have that problem with Jake.
Jake made 3 C's and 2 B's on his report card. He still receives help with language, math, social skills and speech. He is starting to really notice how he doesn't do as well as the other kids. He recently had to label the continents and failed the test 7 times (he kept getting Africa confused with Asia). He said Everyone has passed but me. Mrs. Shukar said Jake is known by just about everyone in the school and is liked by everyone. He's kind and compassionate and isn't that all you want for your kids? Well, it is and that is true about Jake (he is also a Love) but if you are uber-competitive parents like me and Tim, it matters a little.
Speaking of uber-competitive = Luke Kos. Every teacher tells me he really needs to be better at losing. Its hard to grow up. He had straight A's. No-one else in the class got straight A's, not even the REACH kids. His teacher said he goes Above and Beyond and she thinks he should be in Reach. Luke really wants to be in the program, but I told him the first time they want you to give up gym or recess, you'll want out of the program. He agrees. He is also playing Select Soccer - Zach's college coach, Garza, runs this program so they are getting college-level coaching.
Tim is having blood pressure/heart troubles and the doctor does not like it one bit; me either. He works so much!!
We can't wait to go on the next family vacation and/or go to Hawaii (just the two of us).
I finally got a job at a nursing home (thanks to Tiffany) and am loving it. I'm almost done with my CNA (Certified Nurses Aide)classes and then I may enroll in nursing school.
My Gram (who raised us for 8 years) just passed away. It was hard for me because she would always hug me and say she loved me when she saw me out somewhere, but years ago when I was 18 (and the child support ran out), she never really called or cared about me, even told me she wouldn't babysit my child when she'd babysat all my aunt's children.
This has been a tough year period! My twin sister screamed at me in front of 50-100 people at the benefit for the house (when it burned down) because she said I talked to her ex (who showed up at the benefit because he was Tim's boss). I told her we didn't invite him. I told her I didn't talk to him, but she didn't believe any of it and called me every name in the book. Needless to say, we haven't spoken for a year - how do you fix stupid crap like this? I can forgive crazy if the person apologizes . . .ugh!
Last Item - We got a new PUPPY!!!!!! She is part lab, part pitbull and is such a Crazy Puppy. She's about 7 months old and still poops/pees in the house (on brand new floors ugh)but she has filled a void left when we lost Butterball, Kit Kat, Sky and Rex. If we play Fetch and she can't find the stick I tell her Butter would've found that (I know its kinda mean, at least she can't understand me). She has broken all the house rules like no dogs on beds and she doesn't care at all. ha
Love to All!!!! Hope Life is Treating You Well!!!
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