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

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

Zhenya

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 lights...no matter where we turned he was focused on the lights. So precious...