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Anya’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about our little Anya.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

 Anya approached her Mom and Dad in early April 2012 complaining of stomach pain and a pain in her side. She asked for some kind of medicine to help her tummy ache. She tried TUMS, which soon changed to Childrens Tylenol to cope with the pains. She never displayed a temperature or anything more than simple aches and pains of a growing nine year old child. After a few more nights of concerns and complaints of tummy pains though, Anya asked to see the family doctor. We took her to the Doctors office the next morning.

When we got to the Doctors office we discovered that she needed an x-ray to determine what was bugging her. When the X-ray came back we looked at it together and there was a strange shape to her left hip bone. The Doctor ordered an MRI to be done at Children's Hospital in St. Paul.

Anya and Dad went to the hospital. She did great in the tube, but her nerves were getting to her as she reached the half way point. Anya asked that Dad would sit in the room and hold her hand while she finished the test. It was a really special moment for Dad.

Dad recieved a call from the doctor's office that there was some sort of adnormality on the scans and that the doctor wanted to meet with Mom and Dad the following day. When we went to the office the next morning the Doctor confirmed that Anya has a tumor 4cm X 5cm X 5cm. Our worst nightmare confirmed. The Doctor said that most likely it is Ewings sarcoma, but further testing would need to be done to absolutely confirm the results. She stated that our Oncology team from Anya's brother was already alerted and working on the problem.

Latest Journal Update

From the Mouth's of babes...

     This week's information has taken us a while to wrap our heads around, and only now can we really write about what is going to happen. As you know this trapped air bubble has created a whole new level of concern for us, our doctors and the medical plans that we have in place. We did not get final word from our radiologist until last Monday placing a final go ahead stamp on the procedure. She has been running test model after test model trying to reach a level of radiation exposure high enough to destroy the cancer but keep the host alive, with minimal side effects.

       Well the fact of the matter is that with photon therapy like proton therapy we are not going to do enough with radiation alone, to get rid of the whole tumor. The doctor said that the lungs can be safely exposed to this radiation up to 20 grey, (grey is the measurement for radiation). The Doctor says that she is confident that an exposure of 12 grey to the whole lungs will get the exposure on the tumor close to the level that she wants but only to 45.8 grey. According to the math, the ideal level for maximum effective exposure is 55.8 grey. That being said, if we add 10 grey to the equation to hit the tumor with 55 grey that exposes the other organs to an additional 10 points of increased radiation which puts the whole lung exposure to a 22, over the limit and not good for Anya. The radiation itself will have side effects long and short term... we are trying to do what is best for Anya, but we are kind of in a pickle because no matter what we decide to do there is some sort of risk and doing nothing is not an option.

     The tumor has stopped growing. It has actually shrunk in size by about a centimeter. The air bubble seems to have sealed itself and is presently stable. The doctors will monitor its progress the entire time that we will be treating with chemo and radiation, but the risk is that the bubble can pop causing an emergency, or it can simply be absorbed by the body and nothing will happen...we just don't know.

So, we are going to start chemo and radiation tomorrow. Anya will have a week of chemo and then three weeks off, and then another chemo after that. During this entire time she will be going to radiation therapy for the next 6 weeks every day Monday through Friday with weekends off... (Sounds like a job posting). Anyway, We don't know what to expect over the next six weeks and the doctors tell us not to plan very much in the short term. We will get through this treatment and then draw a new baseline at the end of the six weeks.

It is now 24 hours since I last wrote and Anya has gone through her first treatment. She told her Mom that she was a little nervous about getting sick or feeling extra nauseous. She said that she believes in God and that she prayed before the procedure that she wouldn't be nauseous. She says that she feels fine so far and hopes that the rest of the treatments will go as smooth.

From the mouths of babes...

Please keep a prayer in your hearts for our little Miss Ah.

blessings


Mat

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Comentarios

7 Comentarios

Tari Larson
By
Prayers in place! Love to you all! Your patience, trust, strength and faith are unlike anything I've ever seen. Wishing best blessings and outcome for Anya over the next 6 weeks...blowing xxxooo!!
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Emily Behr
By Emily
Prayers to the moon and back for Anya and your family!
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1 person hearted this
Jenny Wazlawik
By Jenny Wazlawik
Consider the entire DeVol family lifted up in prayer today!
Anya, you do nothing but amaze me with the grace and strength that you face each new day and each new trial with. You simply are a shining star!
Mat and Zhenya, your love for the Lord and this child come shining through each post. Know that you both are raised up in prayer along this journey as well.
Blessings to your family,
Jenny
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Dina Anderson
By Dina Anderson
Anya,
I will be thinking of you and praying for your returned health.
Mat and Zhenya,
I will be praying for you as you wrestle to make the decisions on treatment options.
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Kristen Elbe
By Mrs. Elbe
You are kept in my prayers, always, sweet Anya.
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Lori Tierney
By Lori Tierney
Thanks Mat for the updates! I so appreciate your explanation and medical updates for your sweet Anya! I hope your other kids are doing well. I think of you often and pray for you all each day. Anya's fight for life is amazing and so courageous! As well, as you and Zhenya's gift of parenthood and your love of your daughter and her life is quite beautiful. We never know what road our life will take us. Keep up the strength and peace in your heart....
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Jackie Ross
By Jackie Ross
It's just over whelming to read this, and I cannot imagine how you are feeling or dealing with this. Our staff at Malone Elementary, keep you in our prayers and thoughts. Keep up the good thoughts Anya!
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