×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Ellie Belle - with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

My 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!!!!

Feed

Scotty Rolfs posted a new journal entry, "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 ... Read more

sandy becker signed Ellie Belle -'s Guestbook.

Janice, I so agree with everyone about the beautiful tribute you gave your grandma, and she so richly deserves it!!!  Honey, I know all about the hurt you all are going ... Read more

Katie Weaver signed Ellie Belle -'s Guestbook.

Praying for you Janice, this is heartbreaking. I love the memories you shared about growing up with her, she sounds amazing.  Read more

Ruth Gauthier signed Ellie Belle -'s Guestbook.

Janice,  What a beautiful tribute to your Grandmother.  You surely were blessed to have such a Godly woman in your like.  I know  she truly loved her grandchildren. ... Read more

Amy Krill signed Ellie Belle -'s Guestbook.

I feel your pain. We are here sending you love, peace, and light. Your grandma is in very good hands already and it will only be even better when she gets there. The hard ... Read more

Pastor Donald Cox signed Ellie Belle -'s Guestbook.

Janice, great tribute to your Grandma.  She deserved every word!!  But, do not be angry.  You have had her for so many years, have so many fabulous memories, and this ... Read more

Julie signed Ellie Belle -'s Guestbook.

Janice.  I am so sorry for all of this.  I have watched you, Sheri, and Laura over the years and your love of your grandmother is strong and true as is hers of you guys. ... Read more

Scotty Rolfs posted a new journal entry.

I have been accused of having too much to say.  I have been accused of being emotional.  And to both these counts, I plead guilty.  But, today I have resorted to my ... Read more

Scotty Rolfs posted a new journal entry.

Today, my little Ellie turns 8 - EIGHT!!!!  She is a miracle, she is survivor, she is my hero.  Being that today is Ellie's birthday - we have a challenge for you!!  40 ... Read more

Scotty Rolfs posted a new journal entry.

I received a lot of failed message notifications from this email I sent, so thought I would post here as well - I apologize if you are getting this multiple times - just ... Read more

Scotty Rolfs posted a new journal entry.

I wrote this tribute to my Grandpa in September of 2010, when Ellie had questionable scans come back and we were waiting for that torturous 4 week timeframe to rescan.  A ... Read more

Show more recent activity