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
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!
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!!!!
Jan 19, 2014 3:58pm
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 writing because its what I do when I need to work something out in my head. And it seems easier than to tryand talk it all through. And so I am here. And so you have been forewarned. You may take your leave politely now if needed. :) And if you are willing to proceed deeper into the inner workings of a mid 40 somethings thought process, then I accept your support.
As I write this, my Grandmother is dying. And as I write this, I am in the middle of a war. A war between love and hate. A war between seemingly good and evil. And it is a place I never thought I would be and I would never wish on anyone. The amount of anger and hatred that I have been confronted with in the past few days is absolutely unprecedented, unnecessary, shocking and disheartening. I am sad. A sadness that consumes me at this point. I am sad for my Grandmother. This is not what she would have wanted. This is not what she deserves!
My Grandmother is an amazing woman. She has been an enormous part of our life. We grew up with my Grandma. You may remember this from my post on my Grandpa. And we know how blessed we are to have had them in our lives. Memories I have of my Grandma are priceless. They include going to the swim park every summer, going to the amusement park every year with her, baking many many monster cookies, picking many apricots and turning them into jam, riding bikes along the river, eating ice cream in the garage, going with Grandma to work at her beauty shop and talking to all the ladies, playing games and puzzles in the back and drinking coke from a glass bottle which cost us a quarter. She loved taking us to work and we loved going with her. My Grandma was an amazing lady. She spent many a night lying in bed with us,brushing our hair out when we got combs stuck in them, intervening between many a fight we as sisters were bound to have and loving us no matter what. She took us to church every Sunday when we stayed with them. She was extremely talented as well. She could create masterpieces with her hands that were simply amazing. When Cabbage patch kids came out, she made each of us our own. She made all of us quilts and china dolls and stuffed bears. Not to mention our everyday clothes or our fancy dresses. She was creative and inventive. We still hold onto these treasures she created. She made all of these out of love. She spent many a time giving us perms and cutting our hair in the newest fashion. She supported us through boyfriends, challenges at school, home life and anything that came our way. She made sure to come to every ones of our childs births – her great grandchildren. She loved them and was so proud of them. And when my Ellie requested Great Grandma at the hospital because she was sick from chemo and wanted to hold her hand, my Grandma was there. We were all there with my Grandma as my Grandpa passed out of this world. We saw her amazing love for this man she spent 70 years of her life with. She was an amazing woman! And we all loved her!
And so today, in the midst of this war, I will carry on with love. Past the hurt and past the tears, I will treasure these memories that are mine. Memories that I hold dear in my heart. And I will forever be thankful for sisters and a mom who stand with me in this and support me through this. We all love Grandma and she loved us!! Nothing will change that. No one will change that. And since we are not allowed to be with her during this time, I pray that she will go in peace and forget about the things of this world that bring sadness and pain. Because that is what she deserves!! We love you Grandma!!! Tell Grandpa Hi for us!! xoxo
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