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Ellie Belle -’s Story

Ellie fought cancer for 14 months at the age of 3 and endured 6 surgeries, 53 blood transfusions, chemo and radiation.  She has been in remission since June of 2009

https://picasaweb.google.com/janicerolfs/EllieSBattle?authkey=Gv1sRgCM20g-Cb3LypGA

https://picasaweb.google.com/janicerolfs/EllieSSwingset?authkey=Gv1sRgCOaWjZ3Y8774rgE

During the week of March 31st, we took a family trip to Disneyland - it was Sophie's (our oldest) birthday. We had a lot of fun and so did the girls. Ellie was a little more fussy than usual and didn't eat a whole lot on the trip, but we didn't think too much about it since she is a very picky eater. She also had a slight fever on and off for a couple of days, but we gave her tylenol and that seemed to help. When we got home from Disneyland, she was still not eating. I took her to the doctor where they did a strep test which came back positive and they put her on some antibiotics. We also noticed that her stomach was a little bloated, but again, thought it would go down once she started eating again. A few days later, I was taking a dress off Ellie, when I noticed a "lump" on her side. It looked like she had an egg sitting under her skin on her right side. After a few panicked phone calls, we were in the doctors office and getting an xray which came back with nothing they could see. They sent us home saying that it was probably her bowels backed up and it would move by the morning. When it didn't move, we were back in the next day for an ultrasound. They called Ellie's pediatrician to come in and talk with us and that's when we heard the news that Ellie had a tumor. What took our breath away in the following sentences was to hear that it was cancer. We were sent straight to Children's Hospital where a multitude of additional tests were taken as well as a CT scan which showed us that the tumor had spread to Ellie's lung as well. Words simply can not describe all of the emotions and questions and literal kaos that followed for the next few days. Ellie was scheduled for surgery, radiation and chemotherapy.

The tumor in Ellie's body had completely taken over her right kidney, so surgery involved removing her entire kidney along with the tumor, as well as putting in her mediport where she will receive her chemotherapy.

Ellie was able to come home on Tuesday, April 29th and we are so happy to have her home. The initial diagnosis is that the Wilms tumor that Ellie has is of the "unfavorable" type, meaning that it is resistant to the treatment protocol for the more common "favorable" type of tumor. This means that both the radiation and chemotherapy required are much more intense, the resulting side effects more pronounced and survival more challenging to achieve.

Ellie began both high dose radiation treatment as well as chemotherapy on May 5th. She is participating in a study through the Children's Oncology Group through Children's Hospital in Denver that makes certain chemotherapy treatments available to her that would not otherwise.

After two weeks of daily chemotherapy and two and half weeks of radiation, the CT scans showed that the tumor in her lung had reduced by well over half on May 23rd. Another round of two weeks of chemotherapy resulted in another reduction of the tumor by half of what it was on the 23rd. We are certainly blessed by what we have experienced so far.

We were advised that the tumor needed to be removed from her lung surgically and this took place on June 19th. This was needed as the next round of medicines focus more on "retraining" Ellie's cells to both not produce cancer any more as well as train any cancer cells to self destruct. They do not fight the tumor directly.

Ellie in the midst of her thirty six week long protocol of chemotherapy that began the week of June 23rd. Throughout the process we will receive scans and make adjustments where necessary, but overall, we know the general direction of her treatments.

By the grace of God, we are steadfast in our determination in helping Ellie beat this and grow into the vibrant, strong woman we know she will be.

We cannot help but thank each and everyone of you for your prayers and kindness to allow us to even get to this point. We are truly humbled to have people such as you watching over us. Thank you so much!

***Update***
As of June 10, 2009 - Ellie is officially in Remission.  Praise God for bringing her through this!!  We simply can't put into words what an awesome time this is!!!!

Latest Journal Update

15 of 50

A little over six years ago there were 50 families that were likely living normal lives.  Within a year, each of those families would find out that their child had a very rare and aggressive form of cancer.  We were one of those families.  Today, approximately 15 of those families can still tuck their kids into bed and kiss them goodnight.  The other families are not so fortunate.  That’s 35 of those 50 families that have lost their child to just this one type of rare cancer.  There are hundreds of types of cancer that afflict thousands of children each and every year.  The loss is incredibly saddening. 
 
As I mentioned, I am one of those original families.  My daughter Ellie fought through surgeries, radiation, chemotherapy, side effects, infections, scans and more over 14 months of treatment.  As of last month, she has now been in remission for five years.  This, by definition, means that she is CURED FROM CANCER!  And we are overjoyed at hitting yet another milestone in this journey. 
 
However, my mind always goes back to the other 35 families.  I know some of them.  And as happy as I am for Ellie’s next phase of her life’s journey, I know that we can do more to help those children whose outcome is not as favorable.  So, for the sixth year, I am riding to honor my daughter in the Children’s Hospital Colorado Courage Classic.  I am riding to support the hospital that helped to cure my daughter in the hopes that I can make a difference for the next 50 families that are just starting the childhood cancer journey. 
 
The Courage Classic is a three day bicycle ride through the Rocky Mountains covering over 150 miles and thousands of feet of climbing.  This year, I have the honor of riding with both my daughters, Sophie and Ellie, on the family day to celebrate our victory and to help raise money and awareness to fight pediatric cancer.  Please support my ride by donating to Children’s Hospital Colorado at:
Or if you would rather support Ellie or her big sister Sophie who are also riding this year, you may donate under their names at:
http://www.couragetours.com/2014/sophie_rolfshttp://www.couragetours.com/2014/ellie_rolfs
 
Thank you for your consideration and helping the next 50 families!
-Scotty