Evie's Story 3/30/2016-4/2017

The following are the updates the family had made prior to 7/12/2017

March 30th,2016

Sweet little Evie is 2 years old. She loves the normal 2 year old things, like Frozen, bright colors, dresses, playing outside, and puppies. Her mom is Taylor Fairman and her dad is Mychael Mueller. On her mother's side she has Grandma (Mimi) DeeAnn and Grandpa (PeePaw) Kane as well as two aunts (Conner and Morgan) and one uncle (Kane Tyler). On her dad's side she has Grandma Sally and Grandpa Doug.  

   Evie was taken to Blank Children’s Hospital on 3/28/16 after discovering a lump in the right side of her abdomen. Doctors in the E.R. did an ultrasound and found a mass in her liver. Evie was admitted for more testing. The next afternoon the results from Evie’s blood work and CT showed that Evie has a tumor engulfing 80% of her liver. The doctors diagnosed her with Hepatoblastoma, which is a rare form of childhood liver cancer. The physicians informed us that operating to remove the tumor is not an option right now, as Evie would not have enough healthy liver left for proper functioning. The next step is 4 rounds of chemotherapy over the course of four months to hopefully shrink the tumor enough to be able to remove it completely. Her first chemotherapy treatment is set to start on Monday 4/4/16. We are praying that the chemotherapy will shrink the tumor enough to remove it, but if the chemo is not successful we will have to plan a liver transplant for Evie. Evie has a long road ahead of her, but doctors are hopeful that the chemotherapy will be successful. Evie is going to need 24 hr care with extensive medical bills. Together, we can take some of the financial burden away from this family. Please keep Evie Mae in your prayers! #GoTeamEvie

April, 2016

Evie had surgery to put the port in which gives easier access for her blood stream. This way they will be able to run her I.V., draw blood, and give her chemo treatments. She came out of surgery and was in some pain. The nurses have been giving her some morphine to help with this. Miss Evie has been asleep virtually the whole time since surgery, with the exception of some stirring. From what the surgeons saw, they believe the tumor is Hepatoblastoma. 



We wanted to leave you with a positive note, this is how Evie looked this past weekend on Easter. This was the last day as a normal two year old before Evie's life changed forever. 



The next picture is from the Dolphin Research Center in Marathon, FL with her PeePaw. Every time the dolphins would jump out of the water, Evie would turn to PeePaw and they would giggle together.

April, 2016

We got some good news back with the biopsy results. The results showed that it is in fact the Hepatoblastoma that the doctors thought it was versus the more aggressive kind. Evie Mae had a rough night last night. She ran a fever throughout the night of 102.3 and has had some pain with urinating now. The doctors put her on a strong antibiotic called Rocephin. 

We are disappointed today that because of Evie's fevers and her low hemoglobin levels we will not get to go home today or tomorrow like we had hoped. 

Please pray for her body to get over the infection and for her body to stay strong as she starts chemo Monday. #GoTeamEvie

 

April 5, 2016

We would like to first say "Thank You" for all the prayers and generosity from all of you. We are amazed and humbled by the amount of love and support we have received. 



Since the last update quite a bit has happened. Saturday Evie was very weak and running a high fever. She received a blood transfusion due to low Hemoglobin, which helped her gain some strength back. She was able to go to the play room and play with some of her favorite toys on Sunday. 



Monday Evie was still running a fever off and on but thanks to many prayers she was able to start getting her Chemo on Monday night. 



She is receiving chemo again tonight.



Please pray that she tolerates the Chemo and is able to go home for a few days before she has to be back for more Chemo on Tuesday. It is all she really has asked for since she has been here. In her sweet little voice she just keeps saying "Can we go bye-bye......I want to go home".



Thank you for your continued prayers. We will keep you updated.

 

April, 2016

Since our last update Evie has had another Chemo infusion. Her blood work has been 

fairly positive, however she is feeling effects of the treatments already. She has 

sores in her mouth and throat and is extremely tired and weak. 



We did get to leave the hospital to be home last night, Yay! We will return for the

next infusion on Tuesday. We are very happy to be home and are hoping her appetite will improve now. Evie was able to play with her own toys for a few minutes before going to bed.



Please continue to pray that Evie will feel well enough soon to show us that adorable smile.

April,2016

Here's how the week has gone. Evie had her 3rd day of Chemo Tuesday. Over the weekend, Evie was very restless. Waking up multiple times a night and not taking naps much at all. Taylor was having to keep up on medicine times, hydrating, and making sure Evie was eating enough at the same time. Because of the sores in Evie's mouth, she had been resistant to hydrating and food Taylor had been trying to feed her. Taylor had to syringe water and protein-heavy shakes/smoothies multiple times a day. 

 


Tuesday night Taylor, Mychael, and Evie headed up to Mayo in Rochester, MN for an appointment on Wednesday. The insurance company requires a second opinion and it never hurts anyway. Wednesday in the middle of speaking with the Doctor, Taylor felt Evie and they took her temperature. It came back over 103. They immediately admitted them to the hospital and were told they were not leaving last night. Today they checked her blood to find that her platelets were dangerously low and her white blood cells were hanging at about 1. It goes without saying, they will not be going home until they get Evie's counts higher. They started to do a blood transfusion earlier once her temperature had subsided. However, with 45 minutes left, of this approximately 3 hour transfusion, Evie's poor body had hit a high of 104 degree temperature. They stopped the transfusion, for that reason. They are hoping to get her counts up in the next few days to at least transport Evie back to Blank for her regular treatments. I will let you guys know the details from here. Please pray this beautiful little girl starts feeling better so they can get her back around where she calls home.
May, 2016
The past few days were rough and scary ones for Evie Mae and our family. They started giving her a feeding tube every few hours on Friday because she was not getting enough nutrients. Her fever subsided very few times over the weekend. There were literally around 45 diapers that she had diarrhea in, therefore her electrolytes were dwindling and are still very low. On Sunday night, Evie's belly started feeling very hard and that prompted the residence and doctors to schedule a CT scan for yesterday. This could be very bad because if she has anything they need to operate on, Evie's poor little body can't fight back infections or clot itself very well. During the CT scan multiple doctors and residence came, in hopes that it was not as bad as they knew it could be. The CT showed that Evie has pneumatosis, which is gas in the bowel wall. We are still not in the clear, even though it didn't tear her bowel walls like they hoped it hadn't. Thankfully they caught it quick enough so they can treat it. Pray that it does not tear the walls now because this is very serious and scary. She cannot have any food in her stomach for about a week so she will have around 5-6 things hooked up to her port daily to get her the medicines, nutrients, and liquids she needs. Also, Evie started losing her beautiful long hair so she did get it cut yesterday by Mimi and Taylor. We are hoping Evie can fight this with the help of the medicine and be feeling much better than lately. It's been very hard on her body and she has been laying in bed pretty miserable lately. Pray we get to see that beautiful smile soon. And in other news, it may go without saying but Evie will be up at Mayo at least a little while longer to get this under control. We don't know how long but we hope not too much longer. Please just keep praying for her. This little girl is so strong. We appreciate all of the love and support. Updates for her Angels for Sam events will be on their Facebook.

After her haircut and out of bed for the first time in days yesterday
May 2016
Evie got the fight back in her yesterday, which was a good sign. She still had fevers but not as often. Today was no fever. We took Evie on multiple rides in the wagon and she even just sat in it to just have her own space and sleep for little bits of time. She felt well enough to play last night around 10:30 in the play room. She didn't sleep barely at all last night because she was either woken up or was hurting and woke up crying. Her hair was falling out in clumps the past few days so it was buzzed off today. That was great because it was starting to get in her mouth, all over, be itchy and uncomfortable. Her counts were a little better today and her insides are fighting back a little bit better now. We moved from Mayo to Blank today which was great because it's much more convenient. Even though we are back at Blank, unfortunately Evie does not have high enough counts to have visitors. We appreciate all of the prayers and support. I hope you all understand that we wish you could come see her. Right now it's very important to keep her well enough to finish her last day of her first round of chemo and stay well enough to continue the chemo. Continue to pray for her and keep her in your thoughts. This is still just the beginning of this long journey. Thank you for your continued love, support, and prayers.

Getting the rest off!
 
May 2016
Since last time I wrote, Evie's counts have been slowly increasing and she has been in a pretty good mood lately. Her mouth is still healing with the sores. The next round of chemo has been moved to tomorrow because of the sores in her mouth. Evie, Taylor, and Mychael were able to go outside for a little bit on Saturday and home for a few hours on Sunday. Evie was basically only eating small amounts of chips these past few days so they started her back on the feeding tube today. Evie's new favorite thing is to be pushed around in her stroller. Otherwise, everything is mostly the same but I'll update with how tomorrow goes with the first day of her next round of chemo. Thank you guys for continuing to pray for Evie and keep her in your thoughts! The picture is of her cracking up at the snapchat filters. Her giggles every once in a while have been contagious.

May 2016

Hey guys! Sorry it's been so long. Evie got to go home from Thursday until Sunday last week to try to get her mouth to heal. She went back and started the second round on Monday. Her levels have been doing great and she's continued to feel better. After chemo on Monday, the doctors let her go home yesterday. They went back today for a shot to help her white blood cells to build up quicker after being depleted. The appointment today was just for that then they should still be able to stay at home until hopefully next week for her second day of the second round of chemo. They still have her on the feeding tube every few hours. She has been enjoying playing in her playroom at home and outside in the sand box last night with the nice weather.



There are a lot of events coming up on behalf of Evie. There's bike night on May 17th at Iowa Beef Steakhouse and the ride on June 12th for Angels for Sam. A bags tournament benefit at Black Hawk Park on June 25th in Cedar Falls. Also, a night at Coach's Corner in Iowa City on May 20th.



Thank you so much for the love and support! Have a great week!
May 2016
Hi friends! So, a lot has been happening but nothing too intense with Evie Mae. Here's her update then I will fill you in on our other family struggles. Evie went through her second day of her second round of chemo earlier this week which went pretty well. She has been in a pretty good mood but hasn't been wanting to eat or drink much. She went back home after the chemo earlier this week since it went really well. So that silly little girl has been dancing, playing with her own toys, and watching all of her favorite movies. Her white blood cell count is very low but they had gotten the shot of medicine to help that recover quicker so it should be back up in no time. Tuesday of next week is a big day because the doctors will be doing tests and scans to see if the tumor has shrunk in size enough to try to remove it. After those tests, Taylor will be transporting Evie to Omaha on Wednesday to see the next steps in getting this cancer out of her little body. I'll have some hopefully very good news after that so I will probably not update until after that!


As for what the family has been going through, Evie's grandpa(PeePaw/Mimi's husband)Kane went to the hospital because his legs, feet, and tummy were so bloated with fluids and gasses that it was quite concerning. The doctors found out a week ago today that he has a huge blood clot in his portal vein to his liver and his heart is just not working right. They sent him to Iowa City that night to the hospital. They started him on blood thinners for the blood clot, diaretics for he fluid, and have done a million and 1 tests. He's still in Iowa City. They found out he has congestive heart failure which caused the fluid and gasses. His heart was also in an irregular beat which was causing it to work well below par and regurgitate blood flowing into it. They seem to have his heart under control and had to pull a tooth because of an infection under one of his crowns that they found early this week because of a horrible jaw ache last weekend. The hopes are to get him home by Monday. I will keep you updated on this as well! Keep your prayers and thoughts with Evie and Kane but also with our family. Thanks for everything!

May 2016

Hey! I wanted to wait for all of the information that Taylor, Mychael, Evie, and Mimi got from the doctors at Blank and Omaha before posting. Tuesday was the last day of the second round of chemo and the cat scan's to see the progress. Chemo went well and Evie has been pretty happy, talkative, dancing, and playing like a normal 2 year old. The scans showed that her body is responding very well to the chemo and has shrunk the tumor quite a bit. From Omaha, we'd found out it's now mostly contained on the right side but her portal vein is damaged quite a bit, from what they could see. They did say it will not be possible to just remove the tumor from her body, even after the required 2 rounds left of chemo before the surgery. We found out that a transplant will be the only option because of that portal vein damage. However, at this point they are not certain whether she will be able to accept a portion of a living donor's liver. She may need a full one from a non-living donor and a portion of the portal vein. We will find out which one will be better for her body and the damage on the inside after the 4th round of chemo is completed. Not our favorite news of this battle but the doctors assured us that she would be at the top of the donor list because of age, if she will need a non-living donor. As a note, you can save a life by being a registered organ donor. Please consider being a donor, if you aren't already.



Also, Kane made it home and is still battling the blood clots but is on a long road of recovery. He has already lost around 40 lbs of fluids and gas that were trapped in his body from the congestive heart failure.



Just a quick reminder that the ride for Angels for Sam is coming up. To get a spot on the party bus, comment on this post and I should be able to get you in contact with them.

June 2016
So, it's been a while because we don't have very much to update on. Evie does have a sore on her face from the feeding tube. She's been home mostly, with the exception of chemo this week and a blood transfusion. She has been throwing up more than usual and she got stung by a bee yesterday, which caused her to break out. She's been in a good mood, with the exception of getting sick multiple times this week. They believe that she'll be put on the donor list in the beginning of July but that's still contingent on her getting the chemo done by then. Also, depends on what the doctors find out in Omaha after the MRI and CT scan after the last round of chemo.

I posted a cute picture of Evie with her friend Mara. On the left is from last week and on the right was the week she was diagnosed. It shows the battle. Evie Mae is one strong little fighter. She has matured so much. Thank you all for being here for the fight! Next weekend is the Angels for Sam event on Sunday. See you all then, I hope!

ma

 

July 2016

Hello friends! Evie Mae has been doing fairly well. She is almost done with her last round of chemo before the transplant! In a week she is doing her last day of her last round (before the transplant). She just did her second to last day today. She will still have two additional rounds, however, after her transplant. Between chemo days, Evie has stayed busy playing in the water, cooking out with mom and dad, and watching her new favorite movie, Zootopia. Next Thursday, they will be going to an appointment in Omaha to determine what exactly will need to be done from here with the transplant and get her on the list! Last time they were in Omaha the doctors said it'd, hopefully, only take a couple of weeks to get her a liver (once on the list) then Taylor, Mychael, and Evie will head over to Omaha to get ready for the transplant surgery. The projected recovery time is 8-10 weeks in Omaha. They will put her under and cut her side to side to complete this. Sorry, I haven't posted in a while on here or caringbridge! I did an update on my phone and lost the log in information for this app. Thanks for the patience and prayers! Evie walked through all of the people at Iowa beef steakhouse before the Angels for Sam ride and said, "these are all my friends!" She felt so loved and had a great time after the ride! Thank you everyone who could make it!

July 2016

Hi everyone! We have not been able to do an update with some pretty fantastic news we received while in Omaha, and I apologize! Time flies when your having fun. Evie Mae finished her 4th round of chemo at the very end of June and we went to have a consult with her transplant surgeon in Omaha, along with a final MRI. We thought we would be walking out of there knowing when Evie would be put on the liver transplant donor list, at the very least. We have had 5 different teams of surgeons across the nation tell us this is the only route possible for Evie and the possibility of her tumor shrinking enough to remove is slim to none. 

The Thursday our prayers were answered. Evie's MRI showed that her tumor had shrunk enormously, enough to be able to remove! The surgeons agreed Evie would not need to have a liver transplant! Our surgeon sat just as astonished as we were, agreeing that it is a miracle. We are so unbelievably grateful for this life changing news! Her resection surgery is scheduled for 8a.m. Friday July 15th. Evie Mae will then have 2 more rounds of chemo to complete. There are some issues we will have to watch with her portal vein clottage, but the surgeons do not think it will cause major problems in the future. 

Evie Mae amazes me everyday with her strength and yet again she has accomplished something this great with more strength than anyone I have ever known. We have such an amazing support group behind us, thank you all for your thoughts and prayers. Prayers do amazing things! Love you all! #GoTeamEvie

October 2016

Hi Friends!

Wow the last 2 months have been a whirlwind! Since, our last update Evie had 2 more rounds of chemo, her 5th and 6th, and man were they hard on her. The doctors warned us that these last 2 rounds would be the hardest on her little body and they weren’t kidding. Evie’s ran fevers up to 104.5F multiple times. Her counts continued to drop and not bounce back up for extended periods of time. Because of this We spent those last 2 rounds of chemo admitted in the hospital for roughly the entire time. 

Then, came scan time. The end of her 6th round was really the end of her treatment schedule and her AFP and scans would be a tell all for how well the surgery and treatment worked. They also did an EKG on her heart to see how her heart is functioning as chemo can take its toll on the heart as well. Her CT scan of her liver was AMAZING. Showed no evidence of disease, or NED. Her heart function is still great. Her AFP, which is a cancer marker in her blood, has come down to 14. It is not as low as I was hoping for, but doctors reassured me that it will take months for this number to come down, but as long as it just keeps on the decline Evie is moving in a positive direction. We go back to test her AFP in 2 weeks. 

The ugly cancer is GONE! I can’t even fully describe the feeling of hearing those words about your baby girl. After watching her fight so hard, the good days and the bad days, I felt like this day would never come. And here we are. I am so incredibly proud to be her Mommy. She is my amazing little fighter and my rock. 

The last couple weeks have been spent getting back to normal life and routines for our household, well and of course having some fun! We are so blessed with all the prayers and support we have received, it is has been truly moving. THANK YOU all for your thoughts, prayers, and support! We will keep you updated on news in the next couple weeks. 

#GoTeamEvie

Having fun at the Light the Night Walk

Hospital days long and drama filled HA
 
April 2017
Hi friends and family! 
This is Evie's Mimi. Evie has enjoyed the last few months and we have all watched with joy as she grew a head full of hair, became potty trained and started gymnastics classes just to name a few. She looks healthy and has a ton of energy. That's what make the news we received this week so hard to swallow. Evie had blood work, MRI and chest X-ray on Thurs. March 23rd. Her AFP (Cancer marker in her blood) has tripled in the last few months. Oncologist said the level gives him reason to believe that she has cancer in her little body somewhere. It has been a tough last few days for our family, but our little princess has been her happy, giggly self. 

After considering the news we were lucky enough to get an appointment next week at the MD Anderson Pediatric Cancer Center. We will head down on Wed. for 4-5 days of appointments starting Thurs. 

We pray it is in God's plan to help the Dr's find answers and a treatment to cure her! Evie is gearing up for an even more fierce fight than before!! We know God can work miracles and that prayers are so powerful!

Please help Evie in any way you can. Prayers, donation, or even just getting involved in cancer awareness and supporting other children with cancer.

Thank you all for your love, support and prayers.

I will post an update from Houston this week.

Evie Mae's full head of hair!!

April 2017

Hello family and friends,

We made it to Houston last night after a long day. We started our day meeting with Nurses and Dr.'s here at MD Anderson. All were sweet and made us feel right at home. 

Evie had blood drawn from a vein in her arm which was different and more difficult for her since she is used to using her port. But due to protocol here we couldn't use her port. 

We met with Pediatric Oncologist Dr. Herzog this morning. She made it clear right away without question we are dealing with a relapse/reccurance. That was very tough to hear. Not because we were surprised but because it was the first time we actually heard those words. 

Dr. Herzog said in her experience of more than 30 years cancer will rear its ugly head in her liver again or in her lungs, so let's look closer at her lungs.

Due to that a CT scan was done of her Chest this afternoon. We will get results tomorrow and proceed from there. Thank you all for your continuing love, prayers and support! God is so good!!!#GoTeamEvie

 

April 2017

Hi Friends and Family!! 

Well we made it home from Houston. Unfortunately we don't have any more answers than we had before we left. 

Evie's lung CT was clear and we do now have another awesome team reviewing all her scans and tests. The team at MD Anderson reviewed her most recent MRI and were unable to pinpoint anything. They are suspicious of her portal vein and think possibly it's in there and not showing on scans due to the blood clot she has there.

Evie will have a full body PET scan Friday the 14th. Please pray with us that Dr's are able to find the ugly cancer so we can start our fight to get her well!!

Thank you from the bottom of our hearts for all for your love, support, prayers, and very generous donations! #GoTeamEvie
 

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