Nikki will be blogging for 24 hours on July 29th to raise money for the Children's Neuroblastoma Cancer Foundation in honor of brave NB Fighters! Please
Beautiful Eden Adams [Post #15 4 PM]
Eden Rae Adams was diagnosed, at age 4, with a rare form of childhood cancer on July 16, 2004, Neuroblastoma, Stage IV. She had surgery to remove the tumor from her abdomen on July 20, 2004, with complete success. At the same time, a central line catheter, called a Broviac, was implanted in her chest to accommodate the many types of blood draws and medication infusions that her treatment requires. Eden has had two Broviac line infections, having her line replaced surgically once.
Eden was enrolled in the Children's Oncology Group Protocol, COG-A3973, has undergone six rounds of chemotherapy, and had a stem cell transplant in Dec 2004 and January and February of 2005. Eden has finished of twelve rounds of radiation. She was also randomized to the COG ANBL0032 clinical trial. She will not be receiving the experimental drugs, but the standard therapy, Accutane. She began Accutane as a form of treatment for possible residual disease on April 4, 2005 and finished in September.
On September 22, 2005, Eden was declared NED! NED means that there was No Evidence of Disease found in Eden's scans and tests.
On March 29, 2006 Eden's MiBG scan showed slight uptake in her lymph nodes in her groin area and one shoulder. This may mean that she has relapsed. We are doing more testing to determine what our next steps will be.
Nikki’s Notes: I was reading her mom’s recent update on Eden’s site in June and almost did a little dance after reading this: “Eden [had her] first dance recital. She danced to the song, the Rainbow Connection as sung by Kermit the Frog at Vets Memorial Auditorium.” Why did this make me freak out? Well, in my very first dance recital, at 3 years old, I did a dance to “Rainbow Connection” via Kermit the Frog & I’m from Ohio where Vets Memorial is. In fact, I graduated from college on the very same stage! Too weird.
I can’t resist posting my 3-year-old dance recital pic: www.nikkichannel.net/pics/pose2.jpg
Also, here's a re-post of the strange, but amazing thing that happened to me today:
The absolute WEIRDEST thing ever just happened to me. I went thru the Steak & Shake Drive Thru w/ my dog to get some grub. When I came home, instead of running into the house, my dog ran to the neighbors' house directly across the street from me. I told them I needed to hurry because I was doing a blogathon for cancer today. The lady looked at me and said, "For Neuroblastoma?" I said, "Yes?" She said, "That's you?" I said, "Yes." Apparently Eden Adams, who I'll be blogging about later, is their niece!!!!!!! SMALL WORLD!!! I definitely feel close to God right now!
Please visit Eden’s site: www.edenadams.com and her blog: www.edenadams.blogspot.com
Eden Rae Adams was diagnosed, at age 4, with a rare form of childhood cancer on July 16, 2004, Neuroblastoma, Stage IV. She had surgery to remove the tumor from her abdomen on July 20, 2004, with complete success. At the same time, a central line catheter, called a Broviac, was implanted in her chest to accommodate the many types of blood draws and medication infusions that her treatment requires. Eden has had two Broviac line infections, having her line replaced surgically once.
Eden was enrolled in the Children's Oncology Group Protocol, COG-A3973, has undergone six rounds of chemotherapy, and had a stem cell transplant in Dec 2004 and January and February of 2005. Eden has finished of twelve rounds of radiation. She was also randomized to the COG ANBL0032 clinical trial. She will not be receiving the experimental drugs, but the standard therapy, Accutane. She began Accutane as a form of treatment for possible residual disease on April 4, 2005 and finished in September.
On September 22, 2005, Eden was declared NED! NED means that there was No Evidence of Disease found in Eden's scans and tests.
On March 29, 2006 Eden's MiBG scan showed slight uptake in her lymph nodes in her groin area and one shoulder. This may mean that she has relapsed. We are doing more testing to determine what our next steps will be.
Nikki’s Notes: I was reading her mom’s recent update on Eden’s site in June and almost did a little dance after reading this: “Eden [had her] first dance recital. She danced to the song, the Rainbow Connection as sung by Kermit the Frog at Vets Memorial Auditorium.” Why did this make me freak out? Well, in my very first dance recital, at 3 years old, I did a dance to “Rainbow Connection” via Kermit the Frog & I’m from Ohio where Vets Memorial is. In fact, I graduated from college on the very same stage! Too weird.
I can’t resist posting my 3-year-old dance recital pic: www.nikkichannel.net/pics/pose2.jpg
Also, here's a re-post of the strange, but amazing thing that happened to me today:
The absolute WEIRDEST thing ever just happened to me. I went thru the Steak & Shake Drive Thru w/ my dog to get some grub. When I came home, instead of running into the house, my dog ran to the neighbors' house directly across the street from me. I told them I needed to hurry because I was doing a blogathon for cancer today. The lady looked at me and said, "For Neuroblastoma?" I said, "Yes?" She said, "That's you?" I said, "Yes." Apparently Eden Adams, who I'll be blogging about later, is their niece!!!!!!! SMALL WORLD!!! I definitely feel close to God right now!
Please visit Eden’s site: www.edenadams.com and her blog: www.edenadams.blogspot.com
posted by nikki the red at 3:59 PM
5 Comments:
"Rainbow Connection" was my first dance recital song too!
Good luck with the party and staying up all night!
Oh WOW!!!!!! That's totally a divine coincidence. HOW COOL!!! Eden is just beautiful - her story is amazing.
weird--rainbow connection!!
Nikki,
Thank you so much for including Eden in your blogathon. What a wonderful and noble cause that you have undertaken.
Every dollar that is raised through CNCF goes directly to research, not administrative fees. The CNCF funds research grants directly, so there isn't all the red tape that is involved with the HUGE organizations.
Thank you for working so hard to help save our children's lives!
I know Eden's parents from the Neuroblastoma conference in Chicago last year. Shelley and Rourke are such wonderful people. I have been keeping updated on her website as often as possible.
The thing I love most about Eden is her inspiration and her individuality. She is so amazing.
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