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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

Waiting upon the Lord

I think it is time for me to finally have courage to write an update. I had to think through my thoughts over and over again, pray, cry, raise up again and then fall back way down again. What a rollercoaster... I never wish it on anybody, but in a strange way I am grateful to experience some revelations that brought peace to my troubled soul.

As you all know, Anya's care through traditional medicine came to the end and the last 3 weeks we've been searching for ways to accept it. Our first respond was to get a second opinion from Mayo clinic. Anya's team had contacted them within 2 days. The oncologist there agreed that Anya's plan of care would be the same from their side. They'd be happy to meet with us but only if we bring Anya along. And that's where things got complicated... Our young and brave warrior said "stop" to everything. She decided that it's about time people would listen to her. She asked all the right questions and we just had to take a step back and watch our little girl as she exercised her agency. It is breaking my heart to hear her when she tells us she is not afraid to die and that she is ready. What??? How is it that any child would not have that fear?

I cried and cried for reasons only mothers can understand. I told Anya that I promised my brother right before he died 2 years ago that I would fight for her. She said: " why do you think fighting for me would mean keeping me alive?" When did my child grow up to even think such eternal perspective on things. She is tired and can't live 1/3 of her life feeling good. She's gone through 26 chemo treatments, 24 days of radiation, 2 major hip surgeries, not even counting all the minor surgeries and procedures. She wants to be pain free and have a perfect body and she understood that only beyond this earthly life, only in progressing to the next level she'll be able to obtain it.

Almost every day I ask her if it is really what she wants. Because I still believe in miracles and I have faith that with God everything is possible. Anya assured me that she has faith, just not the same as I want her to have...

In conclusion, we came to an agreement that she won't be angry with me thinking that I am in denial. And as I allow her to exercise her agency, she will let me exercise mine and will let me have hope till the very end. I asked million times Why? and we went through million ways of How? we can get through this. Now we are at the point where everything is up to the Lord, we will wait upon him and will accept His will either being grateful for a miracle or through grief and pain of losing our Ah and knowing that she'll be in God's embrace and be welcomed by so many loved ones who left us already..

As of rightnow, Anya is feeling happy of not having anymore chemo and taking only blood thinner meds and vitamin D. She loves being finally almost caught up at school, she has cello lessons every Saturday and loves it. She did her social studies subject all by herself and was on the top of the world that she was ready for school next day and it was "her" achievement, no help or excuse. She is being a social butterfly and loves planning to spend time with her friends! She LOVES to live a life of a normal kid for the first time in quite awhile! And I love to see how she soaks every ounce of every day!

Our family is trying to learn how to live day to day just to be grateful for each one of them. Are we all cheerful and giddy all the time? Not at all. But we do the best we can at the moment. And always have hope..


Much love, with gratitude for your prayers and care


Zhenya
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Comments

12 Comments

Lori Tierney
By Lori Tierney
My dear Zhenya, what beautiful words and thoughts you have written. Anya has been through so much and has given it her all, as you and your family has. It is amazing what she has endured. I cannot even imagine. What beautiful grace Anya has. She is not afraid. You have taught her well. I am so glad that she can do all of the many things that she enjoys and enjoy the moment of being a girl her age, one day at a time. God is watching over all of you. I will keep praying, caring and hoping....Love, Lori
Hannah Lassen
By Hannah Lassen
I can't possibly imagine what you are going through. All I know is that you have raised a strong, beautiful, smart, kind, out of this world awesome young lady. I know it is hard when someone you love with all of your heart starts deciding their own medical choices. We just have to know that whatever happens in the future was pre-planned and that no matter what, our loved ones will always be with us. You have raised a fighter so I don't believe in my heart that she is going anywhere soon. Anya is in my prayers as well as the rest of the family.
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