Another succesful day

     Today Evan had another CT scan. It is interesting to see how much he changes every 3 months. He is so much more alert and curious about his surroundings. As usual it was not easy to keep him hungry for a long period of time. I woke him up at 5am to offer some formula. He was fighting it, more interested in sleeping, but I managed to feed him about 4oz. Then, 2oz of pedialite at 8am and then-nothing till after scan. Well, it was scheduled for 11:30, we were there by 10:30, but Evan did not get in till noon. Oh, that was not easy... He was so hungry, that as soon as they wheeled him out to get to short stay, he started turning around and flirting with a nurse.:)
    The doctor appointment was planned at 1:30. Well, we did not get to see her till 2:45. I think next time we'll avoid scheduling appointments around lunch time. :) The news from the Doctor were wonderful! She gave us pictures of a scan from November and from today. If Mat can figure it out, maybe he can post it on the blog. Wow, what a difference!!! Our baby is cancer free and hopefully ( very low chance of reaccurance!) we'll never have to battle again.
    Looking back, it is not an experience we asked for, but it was surely a very important lesson. Trust in the Lord, always have hope, never give up, be grateful for everything you have and remember to live in a moment, even one day at a time. We love every milestone Evan goes through. He is going for tooth #5 and still has no front 2 teeth. He looks like a little vampire with those fangs.:) He is still not liking being on his tummy, but sitting up quiete strong. He loves to explore his taste buds, and starting to pull away from baby food. He is starting to wave "good bye" and nozzles for kisses.:) He is not afraid on Charlie and Fuzzy, thinking that they are just moving stuffed animals.:) Oh, I could just go with this list.... I am just LOVING to be a mom to an infant again, even after 8 years!!! He is such a joy to all of us and now that he is doing well, we are starting to enjoy normal life again.
       As always, thank you to all of you, our friends and family, for being there for us, physically or emotionally.... God bless!

Hello Everyone

Many sources have inquired why we have not updated our blog in recent months? Well, honestly we forgot the password...Sorry about that, but as they say no news is good news. Evan has been doing well in all of his check ups. He weighed in at 26lbs 11oz. during his last check. We have a scan scheduled for this Friday. Hoping for more good news.  Thank you for all of your kind words and prayers, they are really helping us.

A young warrior scores big!!!

     Today was Evan's first CT scan since before Christmas and it was awesome!! We arrived at the hospital on time and in good spirits, hoping the whole time for good results. As the nurse bought us back to the prep room Evan was just looking around at every light and sparkle he could find. The nurse weighed him in at 9.550 kg and 28 3/4 inches long. They placed an IV in his foot an took some blood samples to test his chemical levels.      The scan itself went without a hitch. They did need to sedate him, they gave him one bolus that just made him drowsy. The anesthetist was just shocked that he was more interested in the stars one the ceiling of the MRI room than he was in going to sleep at the moment. She had to give him another squeeze on the syringe to get him to go out. The Nurse said they would be quick and then out to meet us. They expected he would be out about twenty minutes after the procedure and then we could take him home.
    We went back to the waiting room they had set aside for us. We waited about ten minutes and the doctor and nurse rolled him out to us and we proceeded to the short stay ward to wait for him to wake up. The only hitch was he started to open his eyes and look around as they stopped the gurney in front of our room. He was already starting to wake back up. The Doctor was really amazed. She could not believe he was already looking for us with his drugged out eyes and movements. It was so funny and cute to watch this precious little man wake from such a unusual situation and then look at us as if everything was just fine and there was nothing more to worry about.
      Over the next fifteen minutes as we watched Evan come out of his fog I had an incredible feeling of peace and assurance that everything is going to be fine. Evan came back to himself and we were cleared to go. Directly after his scan we had an appointment with his Oncologist and we were able to take a look at the new scans. We compared what he started out with and where he is now, what an amazing child this is and what an amazing blessing our Heavenly Father has given us. The doctor described the tumor as having no measurable form or mass for a measurement. The tissue is still there, but it is inactive and looks more like smooshed mashed potatoes than the mass that we saw just three months ago. The scans show that his gut, liver, veins and vessels have all moved back into their proper places. His chemical levels came back well within normal ranges and all we nee to do for now are monthly check ups. Thank you for all of your prayers and support over the last seven months. God has heard us and answered them for all of us.

Six months baby check...

Our little munchk is definitely thriving. At 6,5 months he weighs 24.1 lbs!!! That is 91% percentile in weight and he is 92%  in height. Maybe a basketball star is on the rise:) The newest milestone in Evan's social behavior is not being happy with those he doesn't know. He gave a good whale to the doctor yesterday. And she was actually happy to see that, recognizing his social development in such reaction. According to her, it is usually expected from a 9mo old. So, Evan is ahead on "crying with strangers" milestone. :)
    Grandma "babushka" went home last week. It is an adjustment for everyone in the house. Our helping fairy is gone and routines had to change. Evan is getting out more and so far he is good exploring the world. Yesterday we went to Sea Life in the MOA. He just stayed in his stroller and enjoyed the bright colors of underwater world. Today we went on a walk. What a relief to see this snow melt! And again, he just sat in that stroller and looked around. We look forward to this summer to see him grow and enjoy outdoors after being cooped up for so long!
   Next stop - scan on April 1st..... Please, continue your prayers for Evan's health. God bless!

Two months after chemo

Another long weekend behind us. We were waiting for Friday's HVA/VMA results. I called yesterday in the morning and our nurse Tom called me back and left a message that it was not back yet. In the afternoon finally I got a call, my heart skipped a beat when I heard Dr.McCallister voice. I honestly thought that if the doctor is personally calling, then there are some bad news. And, what a relief to hear that the news were very good. Evan did it again. His numbers dropped from 34/22 to 22/15!!! I can't wait to see on April 1st what's actually left of that tumor. That is when we have scheduled another scan. So, here is  a line of HVA/VMA results since Evan was diagnosed:
                                               November  235/289
                                               December   92/89 (after 2 rounds of chemo)
                                               January      34/22 (no treatment)
                                               February    22/15 ( no treatment)
    I am AMAZED by this boy's power to fight! I am AMAZED and testify of power of prayer! My heart bursts out of gratitude to all of you, our friends, for praying for our little boy. He is in the top percentage with his weight and height development. For the first time on Friday the doctor actually said that I can stress Evan out a little and let him cry at night if he asks for a bottle.:)
      We are definitely moving in the right direction. Evan will have this monthly tests till 36 months after treatment, and scans every 3 months for 12 months and then he will be on the watch every 6 months and then every year. We are hoping for no more surprises and looking at this experience as our trial of faith. We know that God is watching over Evan and we are blessed to have him in our lives and grateful for the lessons he taught us. He is such a joy, he makes us laugh, started sitting up and loves to play with toys and take a bath. He already pulls his sisters' hair and gets frustrated when he wants attention. Evan has the cutest smile and he loves music and lights. He is the most spoiled child in our family and so far his siblings don't have a problem with that.:)

Baby check appointment

On Thursday Evan had his first appointment after diagnosis in our regular clinic. It was his 4 months delayed baby check with immunization. I called Oncology clinic and found out that Evan cannot have live vaccine for 6 months after chemo. So, yay, we had to survive only 3 shots instead of 4.:) It is so painful for me to see Evan cry... But I know it's for his good. Our favorite Dr. Peterson was SO impressed with Evan's well being that she took him out of the room around the clinic to show him off to other doctors. Our little miracle...:) Wait, maybe not so little... Evan was already 21lbs 13 oz!!!!!  This kid just took off after his treatment.And we are so proud of him!!! We are very hopeful for his next scan results. I pray that nothing will set off his health improvement...

*Thank You*

Dear Friends,

Evans has been doing so much better and making improvements everyday. And we would just want to write a thank you for all your help, prayers and words of faith towards us. These things lift us up and have helped us get through Evans fight against cancer. We all hope that one day we can show as much love and friendship as you have shown us for the past year. I remember the very beginning of all this, with moms complications during those 9 months. I remember her in the hospitol just waiting for all this to end. But not only do I remember that, I remember all the people who came to the hospitol to see mom or to see Evan. And for all the people who came to the Fundraiser (hosted by Brittany Checketts) and not only donated but also took the time out of their day to be there. I also thank all the people who brought dinner for us or who were there for us DeVol kids as well, I know some of you may think these things are very small but it made a big difference in our lives. I have learned a lot of lessons in the past year and I thank you all for that. May god bless you,Thank You.

Sincerely,

DeVol Kids

*Written by Nadia DeVol

The boy without strings

Well, Today was the day!!!! Mom, Dad and Evan braved rush hour traffic in a snowstorm to get to Children's Hospital. We were only an hour late...the snow was terrible, traffic was even worse. Our appointment was for 7:45 am we left at 6:30 thinking we would get there with time to spare...boy was I wrong. We arrived at 8:45 and thankfully we were able to call ahead and warn them. The Hospital staff was great of course. The proceedure took all of an hour to take out the central line, stitch the tiny cut, and slap a band aid over the line site. This part they tell me will scab and heal on it's own with out a stitch. Amazing!!! Thank you for all of your prayers and angelic blessings of support and most of all friendship. We feel extremely blessed for all of your prayers and fastings that you have performed on our behalf. We are so grateful for all of you who have placed our names in the temple. We know that God lives and loves each of us here on this planet. He gives us challenges in life to prove our faith. To prove whether or not we will remain faithful to Him. Our challenge is not over, we understand this...Evan is only five months old... Life will roll out something else to overcome, hopefully something else we can overcome together with your help and especially the help of our Heavenly Fa.ther

Evan Almighty :)

  Evan's results came back yesterday, finally!!! It was the longest wait in my life!!! He did it! Without any treatment since December 21st Evan's markers dropped from 92/89 to 34/22. And all I know it is AWESOME!!!! We are happy beyond measures and SO grateful to our Father in Heaven for his mercy over our little boy. He is a fighter, but without God's help and all the angels here, on earth, we would not be able to get through this.
  On Monday, the 31st, we'll have to deal with another sedation, cause Evan's line will get removed. As silly as it sounds, I can't wait to give him a bath without any protecting covers on his chest.:)
     My heart is bursting out of gratitude to all of you, our friends, for your prayers, to the team of doctors who made the wise desisions in treating his desease, to all the nurses who had to take care of him in this journey, to Tiffanie who was here every Monday changing his dressing, getting his vitals, labs, weight and just being SO supportive.
   The journey is not over yet, I know, but where we are rightnow is a great feeling....

                                                First discoveries

                                                      Project Linus Blanket

                                                      With Peter

                                                     The whole crew, Evan's first Christmas

                                                              With Anya

The longest weekend ever...

 So, Evan's appointment was yesterday. It went pretty good all together. The lab results looked great, only magnesium and white blood count was a little lower than normal, but not alarming. The doctor was impressed with how healthy Evan looked, which I am reading as a very good sign. Now we are facing a very long weekend of waiting on urine test results. It takes 72 hours to get the results. So, the story is, that neuroblastoma activity can be determined by so called "urine marker". When Evan was diagnosed, his number was over 290 with a norm of less than 35. After 2 rounds of chemo, and 44% of tumor shrinking, the number dropped to 92/89. If the results of this recent test will be lower, then we have a chance of removing central line and have Evan on every month checks and scans every 3 months and hope we would never face a treatment again...

    With my worries about over 50% tumor being there... As the doc explained to me yesterday of what possibly happening. The chemo destroyed the active tumor cells, and whatever left there, Evan can possibly fight on his own. And I know he can, because he is a fighter and he is surrounded by love, and he is watched over and protected by our loving Heavenly Father. We've seen a lot of miracles already and believe that with faith and hope everything is possible!

Can't wait till Friday

Well, my morning started with changing a dressing on Evan's line, for the first time. I remember how stressed out I was when the nurses were training me to do it before we left the hospital back in November. Since then Tiffanie has been changing it every Monday, and if emergency arised, tnen Mat did  the job. So I thought I will never have to deal with the task. Little did I know.:) this morning, as I was changing Evan's jammies, I noticed that the top of the dressing had an opening. I panicked at first cause Mat was at work, and then , with my mom as an assistant(singing every song possible:)), I did it. Yay! It went well and now I am not afraid of doing it ever.
    Wanted to share that Evan has been gaining nearly a pound every week for the last 3 weeks. He definetely has a good apetite and looks like a very cute chubster. I could just eat his cheeks, so cute! That gives me hope that he is strong enough to fight on his own without any treatments. Looking forward to find out on Friday...

Waiting...

It's been pretty quiet in our home lately in regards of Evan's health. But in our books quiet is good.:) We are just enjoying getting to know him finally, without hospital and clinic visits. He had his labs drawn once and the results were looking very good. Even though his white blood count was lower than normal, it was still fine. And the reason of lower number was his sniffles and stuffy nose. I am SO grateful for our homecare nurse, Tiffanie, who comes every Monday to change Evan's central line dressing, and check his weight, and just give me a piece of mind, that he is doing good so far. Speaking of weight... Our little chunk is gaining almost a pound every week. He really doesn't look like he has cancer... That gives me hope, that he is strong enough to fight it off on his own. And he has such a cute personality! He is just ADORABLE when he smiles, but it's hard to catch on camera since, he is being a little stinker, just stares at it and studies the camera.:) Evan loves Peter, and Nadia, and Anya's dancing makes him smile. He can't get enough of babushka's stories and songs. Thankfully she knows SO many of them, that he can be entartained probably for hours.:)
     It's all peaceful in DeVol's home for now, thanks to all your good friends prayers and support! And we hope it will stay this way. So, January 21st next appointment, couple of days to wait for test results, and then we'll know what's next. Please, continue keeping our little Evan in your prayers...
Love
Zhenya

New Year...New Hope

Well, another week has gone by and now a new year has come upon us. Evan's test is coming up on the 21st. It is still a long ways away. As a parent of a sick child the thought of him being sick breaks my heart. I am on pins and needles every time he cries. I am so very thankful to my Heavenly Father for protecting all of us. The thought of possibly overlooking the behaviors and signs we were given to discover his illness scares me to death. The thought of losing him scares me even more. Thankfully the Lord has given us good doctors with experience and good medicine to reduce the size of his tumor. His hair is starting to thin, but it is still there...sort of. His appetite is back, and he recognizes Mom and Dad really well, We are grateful for all the little things.

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 if...it 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.

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.

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..

Love
Zhenya

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

 

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