Anya DeVol's Journal
Happy New Year
Written Jan 3, 2014 7:29pmIt has been nearly four months since our last update. Life has come back into full swing. School started in September for everyone except Evan. Zhenya is back to working her regular schedule and Mat is back to work at Medtronic on their Helpdesk. Peter is driving and working too; a Junior in High school he is looking forward to the next stage in life. Nadia is a sophomore and doing wonderfully in all of her classes.
Anya is keeping up with her classmates in middle school. One of the most memorable moments for me so far was September 11th when Anya came home from school and said, "guess what Dad, I ran in gym class today..." My heart skipped two beats that day because my little girl who has gone through so much was able to bounce back and tackle school full force and test her limits. Fearless :D
Halloween, Anya's second favorite holiday, proved to be a blast. She and her two best friends decided to dress up as a flock of peacocks for the holiday, the Mom's got together and came up with homemade costumes that worked out great! Anya walked the entire route with her little brother and they walked away with a stash of candy like never before.
In November we went to Hinckley to visit Uncle Dave and Aunt Vicky for Thanksgiving. We had a blast visiting them. We always get a chance to ride the four-wheeler and enjoy life out in the deep woods for a day.
In December Anya had her three month checkup with the Oncology team. The scans came back completely clear. No cancer. We are truly grateful for every little victory we can get. On the down side however, we found out from her x-rays that the graft is not binding properly and the little section of her own bone that remains attached to her socket has broken off and is floating which is causing some discomfort and odd noises that only Anya can hear. According to Dr. Clohisy the seam along her spine did not graft well and something will need to be done there to either reinforce or replace the graft. The donor bone itself has started to fracture just simply because of the pressure put on it by gravity. Dr. Clohisy has suggested that Anya stop all activities like sports and anything that could possibly dislocate her ball and socket. Thankfully she is not completely immobile, just slightly hindered. The doctor would like to do another surgery in March, but the plan for now is to get Anya off to her Make a Wish vacation.
By the way, Anya was approved for a Make a Wish vacation. Her wish is to swim with Dolphins at the Atlantis resort in the Bahamas, so we are heading out that way for a while. We are super excited!!!
Another fun adventure we had recently was to celebrate New years Eve with the Miracles of Mitch Foundation. This is one of the Charities that has helped our family in some of our darkest times. They asked us to speak at the event and share Anya and Evan's stories. We got to meet Eric Perkins, the Sports director and Anchor of the KARE 11 local news channel here in Minneapolis. He was super funny and just an all around great guy. We played games, danced, played miniature golf, jumped in a bouncy house that filled an entire conference room. The night was totally awesome. We had such a great time!!! Thank you Miracles of Mitch and Make a Wish foundation for all of the wonderful blessings you have and are providing. Thank you to all of our friends and family who are still praying for Anya's continued health and well being. We pray that all of you will receive all the blessings God has in store for you.
Written Aug 18, 2013 4:33pmI guess it is a good thing that we've been so busy this summer. I feel though that I am ready for school to start:)
Just wanted to share a little update on Anya's well being. The most exciting news is that Anya's hair is growing. At first it came out dark, but very soft, like a bunny. My favorite part of process were eye lashes. They are not as special as before(used to be blond at the roots and dark on the ends), but long and pretty. Now as her hair starts laying on the side,some copper/auburn color is shining on the ends. Anya is happy to see that.:) She got a little tan and her face color is so much better, and no more dark circles under her eyes.:)
During July we made it to our first in years getaway to Wisconsin Dells. It was a week much needed to everyone. Kids got to swim a lot, miniature golfing, go-carts, even jet skiing. It was a very exciting time for Anya, and very overwhelming at the same time. She understood how still far we are from being completely well. Walking all over waterparks without her cane was very tiring. She shed tears because she did not want to slow anybody down, but her body was struggling enduring all the normal physical activities that we take for granted being healthy. Which brings me to physical therapy...
After seeing Anya progress for weeks in June and July going 3 times a week to Hastings clinic, we hit a brick wall. So, I immediately called Minneapolis. I LOVE how well they work with Anya. My chauffeuring to Minneapolis returned to twice a week at least till school starts. The most amazing work Anya's therapists Lynn and Catherine do with her! Her range of motion in right foot now wishes to be better, so we'll be getting a new set of braces, now for both legs( in addition to braces for her teeth at the end of August). Anya has a set of exercises she has to do every day. And that is always a power struggle.. I hope that when school starts she will find in herself more desire to become stronger so she can keep up with all the kids around her.
Last week my baby girl turned 11. Anya wanted just to be with her closest friends and that's how we celebrated her day . I can't believe she'll be in middle school this year. I feel so blessed that she is here with us, my spunky survivor. This Tuesday we have her first follow up scan( can't believe it's been three months!) and my anxiety level is slightly higher than normal.. I pray it's all clean and we can put cancer behind us for good. Please offer a mention for Anya in your prayers!
The port is out!
Written Jun 16, 2013 11:40pmWe had an eventful but wonderful week. It started with Anya going back to school for summer school. She was very nervous on Sunday night but on Monday she felt better after coming into class. Everyone was very welcoming and helpful. And even though Anya was overwhelmed with amount of math she has to catch up with, I am grateful for the effort that teachers put in helping Anya out. What a blessing it is to be surrounded by such wonderful people in Prescott!!
Tuesday we got to see Dr. Clohisy, Anya's surgeon. He was that last piece in deciphering the scans and their reading. He was so excited to see Anya with only one crutch. She had another X-ray done in his clinic. And according to him, even though the bone is not completely healed, Anya is doing great. 99.9% in infinity, in his words. After the appointment we went to children's to pick up some medicine and to see Lynn( one of the physical therapists in the hemothology clinic overlooking Anya's progress) We were in the waiting room when Dr. McAllister came out with Cindy and started asking us about the appointment with Clohisy. I told her that he sent her a text. She went to check it, and when she came back with her thumbs up and gave me a hug, it finally hit me that we were done. I needed this hug from her to have this overwhelming feeling of relief, to finally know that we witnessed another miracle of healing. Immediately there we scheduled a port removal surgery..
On Friday Anya and I headed to Children's. And it made me tear up a little that the surgeon was Dr. Rustad, who was originally on the team that performed biopsy on Evan 2.5 years ago... We truly have come full circle.
Did I forget to mention that my van broke down again on Monday? I was on the way to take kids to summer camp and it started smoking. The big difference this time was I did not panic. I only panicked about how I would get the kids to their destination. But the car did not raise my stress level any higher. The van was toast. 50,000 miles in one year is a lot, sometimes We can fix things, sometimes we can't right? We got rid of that van the next day and made decision to get a more reliable vehicle.We figured, it was good time to let go of our past and start new and fresh...
Today we received a special witness, a very special conference in our area and for our congregation. A modern day Apostle of God, Jeffrey R. Holland came to our area with a special message. The church house was packed. And what made it even more special is that in the middle of conference our stake president invited Nadia to come to the pulpit to share her testimony with everyone. She was shocked, but when I saw her up there, she was glowing:))) After the conference Peter escorted Anya to see Elder Holland. He was so sweet with her. He said that she was beautiful and he liked her "haircut":))) Last night I prayed that Anya would have this special opportunity to shake hand with this remarkable man. He extended a special blessing today to those who were in need of healing. I have no fear that Anya is going to be alright. I will start with having a desire to believe that my children will never again be afflicted by cancer. And I will rejoice in this miracle of healing and will strive to help Anya to completely recover. She has her physical therapy 3 times a week and we love it so far. She connected really well with her new therapists and she works hard during sessions. We won't know how her left hip is going to grow yet, but we will face those challenges as they present themselves. We are so thrilled to see Anya getting her color back, her pretty eyelashes and eyebrows are growing. She even has a little peach fuss on her head. She got to swim a few times last week. I was so worried her first time. But as soon as she got in the water, she was in her element, just like a fish.
I cannot even express how happy we are nowadays. Very busy, but regaining the normalcy and recovering from all the pain of last year. Forgot to mention that on Thursday we had our first meeting with "Make a wish" representative. Anya got to make a wish:) We are all very excited about it and will keep you posted on that development.
We are forever grateful for each one of you, our angels, who's been always supportive in so many ways: kind words, prayers, smiles, financial support, gifts, rides, visits, food. The list can go on. You will never be forgotten, even if we never met you in person.. Hope someday we can pay it forward..