|
Maddie Dec 2005-age 4
Welcome to our daughter's web page.
It has been created to keep family and friends updated on the treatment of our precious daughter.
Thank you for your love & prayers as we give you a glimpse into our journey.
Madelyn receives treatment at
St. Jude Children's Research Hospital
in Memphis, TN
for Stage IV Neuroblastoma.
MADELYN'S FAVORITE THINGS!
NICKNAME: Chipmunk but adds new ones daily!
COLOR: Pink
FOOD: Trix Yogurt &
mash potatoes & corn
ANIMAL: Penguins & Monkeys
STORY/BOOK: Cinderella
MOVIE: Cinderella Story & New York Minute
RESTAURANT: Snappy Tomato Pizza & IHOP
Drive Thru: McDonald's
PLACE TO SHOP: Build A Bear
SONG: When You Wish Upon A Star & Jesus loves me
GAME: CandyLand
PLACE IN MEMPHIS: Paint-A-Piece, Sweet & Sassy & Once Upon a Time
COMFORT MEASURE: Mommy, "hold me"
PAST TIME: Paci & one in each hand
DRINK: Choco Milk
THINGS AT St Jude: Warm Blankie & Child Life
T.V. SHOW: Zack & Cody, That's So Raven & American Idol
Most of all Madelyn loves to be read to! She also loves to play make-up,
dress-up, paint and put puzzles together!
Maddie (age 2) at diagnosis
January 2, 2004-We began our journey with symptoms
of pain in the left leg and a slight limp
just after turning two.
Dr. visits and tests follow.
January 29, 2004-We received a call from Vanderbilt Medical in Nashville, Madelyn has a mass in the abdomen, believed to be Neuroblastoma.
We arrive at St Jude that afternoon.
January 30, 2004-Madelyn had a bone marrow aspirate. Our worst fears were confirmed. Madelyn has
STAGE IV NEUROBLASTOMA.
80 percent of her bone marrow is covered.
Her primary doctor is Dr Wayne Furman
February 2, 2004-Madelyn has surgery to place her central line. She starts chemo later that night. Protocol consist of Cyclophosphamide/Cytoxin, Doxorubicin/Adrimycin, Etoposide/VP16 & Cisplatin.
March 16, 2004-Madelyn has an incomplete resection of her primary tumor along with the right adrenal gland by Dr. Davidoff.
June 2004-Madelyn needs additional chemo beyond protocol, Topotecan.
September 20, 2004-Madelyn receives her stem-cell transplant on the CD-133 protocol consisting of Mephalan & Busulfan
September 29, 2004-Madelyn is sent to ICU and put on a ventilator for 8 days due to mucussitus, a complication from the Mephalan.
November 2, 2004-Test results show Madelyn's transplant was not successful.
November 20, 2004-Again, back in ICU on a ventalator for 9 days possibly due to more complications of BMT chemo and low T-cells.
December 2004-Madelyn was put on a Phase 1 Study, Irrinotecan/Temozolomide.
January 2005-Madelyn has two rounds of Accutane while having the time of her life on her MAKE A WISH trip to DISNEY WORLD! Her dream come true was to meet Snow White but then got to meet them all!
March 2005-Madelyn received 15 rounds of radiation treatments.
July 2005-Test shows less than one percent in the bone marrow! She starts ICE chemotherapy in combination with Irrinotecan & Temozolomide.
Sept 2005-Tests show ZERO in the bone marrow! MIBG lights up only the primary and bones around the left eye.
Dec 2005-tests show little activity in bone marrow, primary and eye. Madelyn is the first at St Jude to start a Phase 2 anti-body study: hu14:18IL-2.
January 2006-Madelyn completes round 2 of anti-body. She is put on a vent for the third time for 13 days due to fluid buildup and miraculously recovers!
March 2006 to October 2006-Maddie gets scans every 3 months that shows STABLE tumor in the abdomen and ZERO in the bone marrow!
January 25, 2007-Maddie's scans show she has RELAPSED/PROGRESSED with four new spots in the left leg and three in her head.
February 1, 2007-Chemo consisting of Cyclophosphamide & Etoposide/VP-16 starts.
February 14 2007-Maddie begins to lose her hair again.
June 2007-Maddie is the first at St Jude to start TEMKID, an IV chemotherapy once a week. She gets 8 rounds.
August 2007-Maddie has low T-cells from the TEMKID and gets a virus called ParainfluenzaIII and is placed in ICU on a vent for 13 days.
November 2007-after 14 weeks of no treatment due to waiting on a study to open and time to heal, a MIBG and CT show Maddie's tumor has progressed with one new spot on the right hip and one in the back of her head has grown inward toward the brain. She has pain in left leg and head.
Nov 20, 2007-2 days before Thanksgiving radiation begins and then 5 days the week after.
December 17-(her birthday-we receive news that MIBG lights up all over and her bone marrow is covered 80 percent. December 18, 2007-we spend 5 hours in a clinic room making the toughest decision of our life-treatment is no longer an option, we are keeping our faith and trust in our Lord Jesus Christ-she is given "weeks not months"
Please pray for her complete healing and peace for our family!
We thank the wonderful doctors, nurses,
staff & supporters of St. Jude
for the love and devotion they
put into helping save the
lives of these special children!
If you would like to learn more
about Neuroblastoma
Click Here
See how you can give blood
and/or platelets and be put on the
National Bone Marrow Registry Program!
Click Here
1-866-2STJUDE
Angel Island Princess
Click Here
For those who would like more details of Madelyn?s journey
from the beginning click Our Little Girl
and click journal history!
![[Click here to find out more]](http://www.habitatforhope.org/log.jpg)
Order Madelyn's Magnet
|
|
