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!!!!
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 registrations for the Fun Run by end of day today. How do we get this number? Today, Ellie turns 8 - it was 5 years ago that she was diagnosed with cancer. 8x5 =40. We can do this. Registration is all online, payment online (our first year being able to take credit cards), Online confirmation. Sign up at www.teamellie.org. Go to the Fun Run registration page.
Fun Run registration includes t-shirt, entrance to the carnival and lunch ticket. Those of you who have been to the carnival know that we have games, bounce houses, face painting, silent auction, music, hourly drawings, fire truck, bloodmobile and more. This year we are adding a performance by our dance team from Dancers Edge as well as a Reptile show.
Please get the word out to your family, your friends, your schools, your churches - wherever you can send out the info. The more people we have at the park, the better!!! We have TWO WEEKS to get all registrations in and processed!!! SIGN UP TODAY!!!!
This is a fundraiser, with proceeds benefiting The Children's Hospital in Denver - the place where Ellie spent her whole 3rd year of life and a bit more. This hospital is amazing and it is right here in our back yard! I can't say enough about this place!! You never know when you will need it and how grateful you will be for it!
If you have any questions, please let me know! Thank you so much for your love and support!