Saturday, December 25, 2010

The next steps...

Well, we heard back from our team. The Doctors think that since Evan has taken the chemotherapy so well, and his tumor has shrunk by more than we expected, then we should stop the chemo sessions and see if his body will take care of the rest of the tumor on it's own. It is hard to imagine,on the one hand, that we are going to allow the thing that could have taken little Evan from us, to stay in his body. However in a more positive and hopeful view we are allowing his body to prove its strengths against this disease. We know that God has granted us miracles in our team and in the process that has transpired so far. We are so very grateful for these miracles and grateful that we are together fighting this terrible battle. We have met some really great people as well whose lives are still touched by Neuroblastoma, and our prayers and hopes go out to you as well who have been in this fight longer than we have.

I guess the biggest concerns I have about this change in plan are the unknown, what if scenarios. What grows back? What if...we cut it out right now? What if we go through two more rounds of chemo?... Each of these have fairly obvious answers to them in my mind, but they still haunt me. I want to do what is best for Evan. Maybe for now the best thing to do is have patience and see what develops in the next month. We will have some more blood and urine tests to see if the tumor chemical levels have increased again. If they have, we will be back to the hospital, if not, then it will be another month of waiting, observing and reporting back to the doctors what we are seeing in his behavior and development.

Monday, December 20, 2010

Vanya's big success!!!

So today was the big day. Vanya has gone through two rounds of Chemo and it was time to check and see what's going on inside. We went to Children's Hospital in Minneapolis today and just had one success after another. Some days it's the little miracles that mean the most.

Today, we arrived at the hospital just as the snow started to fall steadily. We found a good parking spot and went to the first floor radiology department where our day began. Evan was awesome right from the get go! He was happy and playing while we took his vitals. We sat and played together looking at lights and toys, smiling at Mom and Dad all morning long. Our biggest concern was sedating him for the MRI. The doctors office had called us previously and warned us that they will need to keep us for an extra twelve hours for observation.

We really did not want to put him under for this test. As soon as we were in talking to the nurse that was our first concrern. We really did not want to get stuck at the hospital for an extra 12 hours. Well, just as the radiology doctor came in to talk with us about the proceedure Evan decided to relax and fall asleep on my shoulder.  He slept as she talked and we continued to discuss what our options were regarding getting released before the 12 hours were up. The attending nurse came back in looked at Evan on my shoulder and asked if he was asleep. She scooted us out of that room while he was still asleep and into the MRI for the test.

As I layed him down onto the bed he started to wake up a little. The radiologist tech shut off the lights right away and there were "stars" shining in the ceiling panels...such a cool idea! Evan was so calm and enthralled by the stars in the ceiling that the tech was able to place the necessary straps and guards on the kiddo and get the pictures we needed with barely any problem and most importantly NO Sedation!!!

After the pictures were taken we had a couple of hours before the next doctors appointment and so we had a chance to get some lunch. When we got back to the office we found out some better news, that the Tumor has shrunk in size!!! When we first got scans on the tumor it was...according to the official description, "...a large upper abdominal mass that is centrally located and extends to each side of the upper abdomen, left more than right. It measures up to 7.4 cm in greatest transverse (horizontal) dimension x 8 cm in anteroposterior (front to back) dimension x 5.7 cm in cephalocaudal (vertical)dimension.

Our new dimensions are 5.8 x 3.8 x 5.2 In hopes of better illustration Mat made this chart to show the change in size of Evans tumor. The view is front and side dimensions.

Long story short we had a very good day and it only took us three hours to get home in the snow storm, we made it home safe and are feeling very blessed at the moment.

Wednesday, December 15, 2010

Feeling better

This week is much better. Monday labs showed some promising numbers. Vanya is being very cute. He recognizes our voices, faces, smiles to toys and our "cooings". No matter how much he has to go through, he is being our sweet baby who fights for his normal life. I am SO proud of him already!
  Monday, the 20th, will be very important for us. Evan will have a CT scan to see what happened to that tumor after 2 rounds of chemo. We are very hopeful!!! I think, personally, that it's all gone. That's just my motherly instinct and faith combined together. And, don't get me wrong, if it's still there, I am going  to fight more...
    Wanted to thank everyone for continuous prayers. We would not be able to do it without your tremendous support!!! I see miracles happening already, I am SO overwhelmed with the anonymous help that we recieved! You know who you are, and I thank you and pray for you..


Saturday, December 11, 2010

Well it's been a week since Chemo No. 2...

Well it's been a week since Chemo #2...and what a week it has been. Evan's reaction to this weeks' treatment has been more difficult sooner than expected. At least according to us as parents. His nausea has caused hours of sleepless nights for Zhenya. Hours of laundry and tears for everyone. The saying really is true, when one member of your family has cancer, you all have cancer.
Yesterday, Evan had a check up appointment at the clinic. Scheduled routine appointment; but his numbers came back low.

WBC (White Blood Cells) 0.9 k/uL (Ref. Range should be between 6.0 - 17.5)
RBC (Red Blood Cells) 2.36 M/uL (Ref. Range should be between 3.10 - 4.50)
Hemoglobin 7.2 g/dl (Ref. Range should be between 9.5 - 13.5)

All of this means that he is in his crash period and the low hemoglobin meant that he needed a blood transfusion. It was two ounces over two hours, it doesn't sound like a lot, but when you're as tiny as this little guy two ounces makes a big difference. Last night we had a little bit of a scare after the transfusion. Evan has a sterile window/dressing that covers his central line and the portion of his chest where it extends from. Well the "window" portion filled with blood and looked pretty scary for a while. We had to call the home health care nurse assigned to our case to come over and evaluate his situation. Thank you Jill for coming over last night and putting us at ease. Hope you have had a safe and quiet weekend!!!

Today his color is up, his nausea is down and his mood is much better. We've had a fun day hiding out from the snow and wind. Just enjoying each other and time with Vanya. We pulled out our Christmas decorations last week and he just loves looking at all of the pretty lights. What a precious character <3


Saturday, December 4, 2010

2nd round down!!!

Well, Evan and Dad spent the night at Children's in Minneapolis taking on the second round of Chemo. It went pretty good, all things considered. As always, the nursing staff rocked!!! Leah and Tammy were great nurses. Dad told all kinds of stories while Evan did his part, taking in the medicines, eating, relaxing and watching movies until 10pm. After that they were both tired so Dad put Evan in the crib while he set up the hide-a-bed to sleep on. When Dad turned around Evan was practicing his Superman moves in the crib so Dad decided to let him sleep as long as he wanted to....the next thing Dad knows it is 5am. Dad did wake up from time to time through the night, but each time Vanya was sleeping soundly. When Tammy the night nurse came in for her last set of vitals, Dad was feeding Vanya his morning bottle. Tammy reported that she had stopped in a few times through the night, but each time he was out. She even changed his diaper while he was sleeping and he didn't wake!!!
Evan and Dad came home this afternoon. All the nurses and doctors say that he is looking great and that they are very positive about the success of these procedures. We have another CT scan scheduled for the 20th of December and then we will know what the next step is to this process, more chemo or another operation. For now we will just keep praying that the Lord will bless all of our friends and family as much as he has blessed us over the last three months.
Since before Evan was born we had difficulty with the pregnancy, now we understand a little more behind the why and we feel embraced and enveloped in our Saviors love. As each day passes the thought that someone in the world is thinking of us and praying for us brings peace and comfort in unexplainable ways. Thank you for your prayers and well wishes.

~Mat and Zhenya

Sunday, November 28, 2010

Thank you!!!

So, I am not so much a blog writer, and I am sure that I will still make a lot of mistakes writing in English. For that, forgive me. But I thought I can't miss expressing my feelings about some things that happened last week. Brittney's prompting about the Fundraiser and the blog was one of great blessings that happened to us. When she asked us about it, I felt like my brain was still in fuzz from all the emotional shock that we experienced with Evan's diagnose. All I wanted is for my boy to be well... And I feel so bad that I could not be any help in preparation for the Fundraiser. And then I could not go, since I want to save my days for canceling lessons in case Evan needs me in the hospital. So, when Mat came home, he was shocked of how many friends donated their time and talents for the event. I kept asking him who was there, and he said he was there later, and probably missed seeing some people. And when he said that there were faces he could not recognize, I totally got overwhelmed... I am SO grateful that my little sweet baby boy surrounded by so much love! Please, everyone who participated  in this night of miracle for Evan, accept my deep thank you from the bottom of my heart!!!! I don't know if I can ever properly thank you enough. But if you are reading this, I hope you know how grateful I am for you, for your compassion. I pray that Heavenly Father will bless you for your kind thoughts and for your ability to give!
    This coming Friday we are going in for the second cycle of chemo. Hopefully be home by Sunday. I am absolutely not excited because I already know what to expect... But there is no other way. And then another couple of weeks to be extremely careful because the numbers are expected to drop again. I pray that we can be done with this fight soon. I pray for miracle and I have hope and I know that this baby is loved by his Heavenly Father and his family here on earth. We are going to get through this...

     Much love


Saturday, November 27, 2010

Vanya's Day out

So Evan had his Doctors appointment yesterday. His numbers are looking good. His bone marrow is kicking out the high numbers of white blood cells. Everything is looking good, except for his protien counts. They are lower than they should be, a definite sign that the tumor is still strong enough to be distrupting Vanya's system. We had to give him two rounds of Albumin once yesterday and today. Not a big deal, an hour at the clinic, but man did his energy levels perk up for a while.

After the clinic we decided to take the kids and Vanya to the Macy's christmas display in Minneapolis. We had a really fun time while we were there. Vanya's eyes were bugging out of his head. He is so funny!!! He was looking all over the place. The christmas lights were amazing and all the kids had a great time. best of all...It was free :)

After today's appointment Zhenya and I stopped at Target with Vanya. We stopped back in the electronics department where Vanya started fussing in his car seat. Zhenya pulled him out and his eyes bugged out again as he saw the 60" tv hanging on the wall. He was totally mesmorized by flashing matter where we turned he was focused on the lights. So precious...

Thursday, November 25, 2010


Today we give thanks for all of the wonderful blessings we have received this year. Most of all we are thankful for our family and the love that we share in our home. We are thankful to the many people who continue to show their support to our precious little Evan as he continues to fight his battles. Today was funny because as we sat down to our traditional Thankgiving day meal, Evan was napping in his stroller. Just as Zhenya finished her prayer on the food he started to wake and fuss a bit. he wanted to join us and as soon as he did, he was calm. Sitting together enjoying the smells of the meal was what he wanted to do. It was great.

Tomorrow, Black Friday...instead of chasing after the latest and greatest gift idea, we are going to the Doctor's office to get Evans numbers. Hopefully all will be "well". We have been a little concerned that he may have a temperature, but keeping a close eye on that is part of the program. We will probably stop at the pharmacy on the way home...maybe there's a holiday special on berry flavored triaminic.. :)

Tuesday, November 23, 2010

What an amazing night...

Tonight I saw a miracle happen. I saw a community become a family and a family rally to the aid of one of its'newest members. As Evan's parents we are so grateful to the friends, neighbors, church members and vendors, especially Brittney and her family for putting on such a wonderful event. We were able to raise quite a bit of money, something that will be cherished always. Thank you so much for all of your help, well wishes and much needed prayers. We pray for you too and for all of your well being. We hope that someday we will be able to pay forward the services that were rendered this evening. Thank you again for all of your help. We will keep you posted on Evan's progress as we fight this battle.


This is Brittney, this will be my last post and then I will let Mat and Zhenya take over for good. I am so glad this has become a space for them to share little Evan's Journey! I just wanted to share a few of my feelings about the fundraiser and let you know how well it went. When we get a grand total maybe Mat will post it for you. 
Tonight I am so humbled and grateful to have been able to be a part of the Baby Evan Fundraiser. 12 days ago when the thought-or rather prompting came to my mind and heart to do a fundraiser for the DeVol family I had NO idea what it would snow-ball into. I spent 2 days putting together a blog-and thank you Kassie for designing it-setting up a paypal account and looking for donators and vendors. It just began to snowball after that. People started offering items for donation, and paypal donations began coming in. I started to worry as last week approached that to many people would be out of town and that word wouldn't get out and no one would come. I had shows and fairs booked all week that took up much of my time and I couldn't push it any more than emails, evites and facebook. Luckily YOU all did. It got sent around to the surrounding wards, to all of Zhenyas past and current piano students, to Matt's co-workers, to the neighbors of friends and preschool classe, to the hospital where Evan has had treatment, and then with help from Nicole to KTSP newstation. At 4:00 tonight after a LONG day of setting up and pricing, my kitchen and dinning are were full-like every square inch and then some-of donated items for sale, for silent auction, and baked goods-so many baked goods. The living room, parlor, and office had 2-3 vendors each in them ready to sell. No one really started showing up until 5 and then we didn't get a break until 8:30 when people left. Every person I didn't personally recognize I asked how they knew Zhenya, lots of piano students, lots of Matt's co-workers and a handful of people from KSTP. I couldn't believe the turn out. I thought I was wishing high at 4:00 when I was hoping for $500. At the end of the night I entered the kitchen and most of the baked goods were gone, only a few donated items remained, and a few silent auction items that hadn't been bid on. GOOD, SWEET women helped clean up, women who had been there all night, and some of them for most the day helping me, women who like every other person involved I couldn't have pulled this night off without. Everyone left I sat down and figured out what I as a vendor owed and put it in the box with the rest of the money made. Then figured out what some of the other vendors would owe and came up with a wooping $2300! I was shell shocked! And I still have 2 other vendors yet to know what their contribution will end up being. I am SO grateful to have been a part of this. When Mat showed up half way through the night with pictures of baby Evan tears came to my eyes as I felt my Saviors love for me and for him, and as I felt His appreciation for what I was doing for this family and that baby. I hope ALL of you who donated any item big or small, who bought any amount big or small, who donated any amount big or small, who watched my child today so I could do this, who did ANYTHING at all surrounding this day will take a minute to feel that LOVE and APPRECIATION that our Savior has for you for helping and doing something for this family. I am humbled at the experience and will never be the same, so THANK YOU to the DeVol family for allowing me to give the angels here on earth an opportunity to serve you, and to be a part of it!

Saturday, November 20, 2010

A couple of pics from home after chemo

Our surgeon's artistic side...

If the Surgeon was this attentive to detail on the outside, imagine what a great job he has done on the inside. Since Evan's first surgery on November 8th we have had no unexpected complications from the operation. Thank you Doctor Steve and your team for getting us safely through the first stage of our process. The Semi-Truck made all the nurses smile and helped our other kids feel more at ease.

So Grateful!

Heartfelt "THANK YOU" to all of you good friends for your donations of items, time, money and talents towards Evan's fundraiser!!!!! I am overwhelmed with tremendous support that we are receiving from Heavenly Father's sent angels!!! God bless you all for your kindness!!!
     With much love,


Fundraiser Details

A Fundraiser is being held for Baby Evan 
Tuesday November 23rd 4:00-8:00
3126 Eagle Valley Dr, Woodbury
Silent Auction, Baked Goods, Scentsy, Pampered Chef, Lia Sophia, Mary Kay, Story Time Felts, La La Red, Donated Sale Items-quilts, neighbor/teacher gifts, jewelry, etc.
All commission made from vendors will be donated to the DeVol family and 100% of the Silent Auction, Baked Goods, and Donated Sale Items will also go to the DeVol Family to help them in their fight against cancer!  
Below is a list of the vendors that have websites, you click on their names and be taken to their sites to shop online. Do NOT place online orders! By doing that the DeVol family will NOT get the commission on the sale. So go and find what you would like-item #'s, item names, and prices, and then email your order to She will need your phone number so that she can call you to get credit card info for payment. ALL orders need to be emailed by Tuesday night! 

Friday, November 19, 2010

Evan had his first Doctor's Check up today

Well, the first check up was today. The Doctor wanted to check how our little gift from God was doing. Evan's numbers are on the way down, but still within acceptable levels. He still doesn't like it when they take his vitals, he screamed the whole time. His proteins and nutrients are a little low but we are trying to feed him more to boost that. The Doctor's gave Zhenya a gold star for being so strong :)

Wednesday, November 17, 2010

Evan is home after his first round of Chemo

Well, we finally made it home after nearly two weeks in the Hospital. Children's Hospital in Minneapolis and St.Paul have some of the very best Doctors, Nurses and Surgens in the world!!! Thank you to all of you who have sacrificed so much for helping us through these first stages. It is nice to be home. Here are some shots after Surgery and after coming home.

After the long day I've had...enough time to bath the junk off  my little body is a limited relief...

Tuesday, November 16, 2010

As of Sunday

Yesterday the breathing tube came out. It was a rough night... Today Evan is doing much better. 2 days of chemo are down. One more tomorrow and hopefully on Monday he can go home. I am nervous.. A lot to learn about caring for my baby. And the snow today reminded me of a nasty season we are entering. On a bright side, my sweet boy started to smile today.... And it was so special to hold him again...♥ ♥ 

Friday, November 12, 2010

Sweet Words from Zhenya

Zhenya sent me this message last night and I thought I'd share!

I am overwhelmed to tears with so much devotion in Evan's sake...So far Mat has been sending you all the updates. It's a little too much for me. Tomorrow I am planning to be at the hospital around noon to have a chance to see and hold my baby again. He's been sedated for 5 days now. And the plan is to start chemo tomorrow afternoon as well. I can't wait for the treatment to start! It is 3 days and hopefully by Monday or Tuesday Evan can be home. then, 3 weeks of break and another session of chemo for 3 days hospitalization. After that he'll have another CT scan. Hopefully the tumor will shrink enough so they can remove it surgically. If not, then another chemo. We are VERY hopeful! Evan is a very strong baby and a very special spirit! I love him more then life and know that we'll get through this. ♥ 

Thursday, November 11, 2010


Evan's first family picture Sept 12th, 2010. (9 days old)

Little preemie Evan a few hours after he was born. Five weeks early and a couple minutes without any oxygen prompted the Doctor's and nurses at Childrens Hospital to place him on a cooling blanket for four days. By dropping his core body tempature and carefully monitoring his vitals they effectively saved his brain from any harmful damage of a difficult C-section.

Evan's tiny little foot sticking out from the blanket
09/03/2010 Evan came into this world weighing in at 6 lbs 13 ozs

Everyone who has kids knows theirs child is the cutest little are some pics of ours after he came home on September 15th 2010.

Here is Baby Evan, recovering from abdominal surgery on 11/08/2010 to biopsey a nueroblastoma tumor that was found quite by accident and has turned our lives upside down with worry and concern for the health of our little boy.

This tumor, this cancerous neuroblastoma was literally feeding off of Evan every time he ate a meal. Evan was given IV fluids from the time he was admitted into the hospital not only to help him survive the proceedure, but also to bring his nutrient levels back into normal parameters. As we were assuming to be feeding our baby nutritious formulas, we were actually feeding the monster growing inside him.
His poor little body is all swollen from the IV's they have him on.....

Good News

Good News, He opened his eyes last night and the nurses are needing to force him back to sleep, he is trying to push out his breathing tube and is breathing over the respirator. All very good signs. We have one more scan tomorrow and then starting Chemotherapy on Saturday...

The scan (from yesterday) came back negative for any cancer cells other than a tumor in Evan's body. We feel blessed already! The first chemo session starts on Friday and we'll start fighting that mutant in my baby's body! He is off the breathing tube tomorrow and I will finally get to hold him! I miss that.... ♥ ♥ 

Evans Story

Evan was diagnosed with is the online definition... "a malignant (cancerous) tumor that develops from nerve tissue. It occurs in infants and children and is the second most common solid malignancy of childhood that usually undergoes rapid progression with a poor prognosis upon metastasis"~google health

We found his tumor accidentally. Evan has always been a normal baby with his own little milestones. Over the last few weeks we noticed that he was a little more colicy than normal. At first we thought it was a change in formula, then we thought it was too much air in the tummy. Since Evan was a premie baby (Sept. 3rd, 2010, 5 weeks early) we have been a little more careful at calling the doctor sooner than later. Spending 12 days in the NICU at children's hospital will do that to you.
We started using some well known home remedies, anti gas drops and gripe water, to try and soothe his stomach. After another week of sensitive stomach, we started to notice how he would throw up more and more.
When I ended up in the hospital for low hemogloban and needing a transfusion, Mat spent the night with the baby getting up every hour because he was fussy. A strainning, grunty kind of fussy. When we talked the next morning we decided to have Mat take the baby to see the family doctor one more time. 
Well, Evan performed on que for them, the nurse took his vitals and naturally he was screaming because that is always the funnest thing to do. Mat gave him a couple sips of formula to calm him down. As soon as the doctor picked him up, he threw up all over her. 
Long story short she rushed them off to Children's hospital in St. Paul and they performed an ultra sound of his abdomin. Mat tells me that the technician was marking the various organs, they made out the kidneys, the gall bladder, the stomach, but there was a unfamiliar mass between all of them. We later found out that it was 3 inches wide in all directions. The doctors in St. Paul confirmed it was a tumor and transported us over to Minneapolis where there is a better encology department with better equipment.
The doctors at minneapolis childrens diagnosed the tumor as a Neuroblastoma, they have spent the week running various tests to determine what type of neuroblastoma he has, apparently there is a whole rainbow of types. The tests included an operation and bone marrow test on Monday, a radioactive dye test on Wednesday and a bone scan on Friday. Each of these events requiring Evan to be sedated, so rather than sedating and reawakening him, the doctors and nurses have been keeping him in a drug induced coma for a week now. We have not been able to hold our little baby all this time because that would throw off his stats. He knows we are around and hears us enter the room. We can see his heart rate jump when we caress his little hands or kiss his cheek. It breaks my heart every time we have to leave him.


Hello! I am actually not a member of the DeVol family, I am a friend who wanted to help them have a place where little Baby Evans progression could be posted for family and friends to be able to read. As soon as Zhenya feels she has the time and energy, I will let her take over, until then I am just posting the updates that she gives me, so they are directly from her! I am also in the process of setting up a pay pal account so that if you would like to help lighten the financial burden that all of the tests, hospital stays and surgery's you will be able to donate.  

A little about this family- Matt and Zhenya have 4 children, Baby Evan is the newest addition to their family, he joined them 5 weeks earlier then planned on Sept 3, 2010. His siblings are Peter, Nadia, and Anya, and they LOVE him!