Evie's Story 5/2017-7/7/2017

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

May 2017

Hi family and friends,

Evie had her full body PET scan last Friday along with her blood work. The ugly cancer still isn't showing itself. Dr. Rokes her oncologist is surprised by this as her AFP has now risen to 445 so she has the beast somewhere in her! Her liver enzymes are also high and her spleen becoming more enlarged due to the large blood clot in her Portal vein which is causing blood to pool between her liver and spleen. Dr's think it will show up in her liver due to the kind of cancer she has. The most common places when a child with Hepatoblastoma relapses for cancer to return are liver or metastasizing to the lungs. We are thankful to that it hasn't shown up in her bones, brain or any other organs. 

The Transplant Surgeon in Omaha who removed the tumor and a large portion of her liver in July called this week and scheduled appointment for Friday. We will be heading there tomorrow to meet with him and go over options. 

Thank you all for your continued prayers!! We know God works miracles and feel his love surrounding our family! As we are thankful for every day!!

#GoTeamEvie

 
June 2017
 
Hi Family and Friends!

This is Evie's Mimi. Evie had a CT of her chest and MRI of her liver on Thursday. Chest CT was clear but a new tumor was found in her liver. Also the blood clot in her portal vein has had significant changes that Dr's are concerned about. Due to these factors she will need to undergo a full liver transplant. It was hard to hear even though we thought we were prepared. The next step is to biopsy a lump behind her right ear to make sure there is no cancer in it. If that comes back positive she will have to have chemo before she can be put on the transplant list. Please pray with us that it comes back negative so she can be put on the transplant list immediately!! Evie's next 6 months will be very tough. 

After transplant surgery she will be in the hospital @2 weeks in Omaha, then will have to remain in omaha at a hotel or other rental for another 8-10 weeks before going to DM to start 2-4 rounds of chemo. She is the strongest most amazing 3 year old I have ever seen! We thank god for the love and strength he has given our family! 

Now that you have most of the details...we do have some fun new. Peepaw and I decided Evie Mae needs to have some fun before she has some very hard months, so we are on our way to FL!!! She is going to see Mickey Mouse tomorrow!!! She is very excited!!! 

Surgeons and Oncologist will review everything while we are gone and start things as soon as we return. 

Thank you all for your prayers!!! Keep them coming! God is a miracle worker!!!

 

June 2017

Hi Family and Friends!

This is Evie's Mimi. Evie had a CT of her chest and MRI of her liver on Thursday. Chest CT was clear but a new tumor was found in her liver. Also the blood clot in her portal vein has had significant changes that Dr's are concerned about. Due to these factors she will need to undergo a full liver transplant. It was hard to hear even though we thought we were prepared. The next step is to biopsy a lump behind her right ear to make sure there is no cancer in it. If that comes back positive she will have to have chemo before she can be put on the transplant list. Please pray with us that it comes back negative so she can be put on the transplant list immediately!! Evie's next 6 months will be very tough. 

After transplant surgery she will be in the hospital @2 weeks in Omaha, then will have to remain in omaha at a hotel or other rental for another 8-10 weeks before going to DM to start 2-4 rounds of chemo. She is the strongest most amazing 3 year old I have ever seen! We thank god for the love and strength he has given our family! 

Now that you have most of the details...we do have some fun new. Peepaw and I decided Evie Mae needs to have some fun before she has some very hard months, so we are on our way to FL!!! She is going to see Mickey Mouse tomorrow!!! She is very excited!!! 

Surgeons and Oncologist will review everything while we are gone and start things as soon as we return. 


Thank you all for your prayers!!! Keep them coming! God is a miracle worker!!! #GoTeamEvie

 

June 2017

Hi Family and Friends!

This is Evie's Mimi. Evie had a CT of her chest and MRI of her liver on Thursday. Chest CT was clear but a new tumor was found in her liver. Also the blood clot in her portal vein has had significant changes that Dr's are concerned about. Due to these factors she will need to undergo a full liver transplant. It was hard to hear even though we thought we were prepared. The next step is to biopsy a lump behind her right ear to make sure there is no cancer in it. If that comes back positive she will have to have chemo before she can be put on the transplant list. Please pray with us that it comes back negative so she can be put on the transplant list immediately!! Evie's next 6 months will be very tough. 

After transplant surgery she will be in the hospital @2 weeks in Omaha, then will have to remain in omaha at a hotel or other rental for another 8-10 weeks before going to DM to start 2-4 rounds of chemo. She is the strongest most amazing 3 year old I have ever seen! We thank god for the love and strength he has given our family! 

Now that you have most of the details...we do have some fun new. Peepaw and I decided Evie Mae needs to have some fun before she has some very hard months, so we are on our way to FL!!! She is going to see Mickey Mouse tomorrow!!! She is very excited!!! 

Surgeons and Oncologist will review everything while we are gone and start things as soon as we return. 



Happy Mother's Day to all of you Mothers!! 

Evie is so lucky to call Taylor her mommy! She is an such an example of strength, love and courage. The way she faces every day with the belief that it's in God's hands is inspirational! 

Thank you for all of your prayers!! Keep them coming!!

God works miracles!! #GoTeamEvie

July 6th,2017

This is Evie's Mimi. Before I start on an update our family wants the world to know that Our God is the God!!! He hears prayers, he holds you up when you are unable to stand and he makes things happen in this world that only he has the power to! Evie was put on the liver transplant list on May 26th after we Dr's found a new small new tumor on the upper lobe of her liver. The weeks since that day were filled with hope and fun of summer activities as was feeling well. She swam and did the normal 3 year old summer fun things. Toward the end of June she began complaining of tummy pain and became jaundice. 

Taylor made and appointment right away and we took her to he oncologist at Blank Children's Hospital. We were immediately sent to Nebraska Medical Center as this is where her liver specialist is and the transplant team. 

Evie underwent surgery to place a drain in the bile duct of her liver. She was in so much pain it was hard to think of anything else. But we didn't get to only comfort her for long , because within hours we were told that she had a new aggressive large tumor that had engulfed her liver and moved toward her spleen and small bowel. The surgeon said the cancer has gotten too massive and close to other organs to do a transplant so she will be taken off of the transplant list and chemo should be started again to try and shrink. He said "My fear is it has spread to other organs and their will not be much we can do".

Needless to say we were devastated!! 

Our family did a lot of crying and praying! And then we got ready to FIGHT!!!! 

We took Evie back to Blank where she underwent a CT of her lungs to make sure the cancer had moved there. Wefound out that it had not , thank you Jesus!! We then prepared to start months of chemo and our the fight for her life. 

Monday as chemo was 20 minutes from being hooked to her IV Taylor received a call that there is a donor match for Evie and that her best chance for survival is to transplant her liver, small bowel, pancreas and to remove her spleen. Taylor was in shock!! Our prayers had been answered! We brought Evie to Omaha to prepare for her life changing transplant. 

Monday morning Evie was taken into surgery and given the gift that will be life changing. Surgery lasted about 7 hours . She is in the PICU stable but having a lot of procedures done and has had a rough last 24 hours . She is heavily sedated but off of the ventilator now. 

We know you are all prayer warriors so please pray for Evie her care team and especially for the donors family! In the midst of their grief they made a very difficult decision that changed lives! We will be forever grateful for their angel!! 

Thank you all for your love and support!!

We love you all!! 

God is so good!

Miracles are real!!!

#GoTeamEvie

 

Can't wait to see this smile!!!

 

July 7,2017

Hi Everyone! Just wanted to give a little update with how things went today for Evie. 

Today was a hard day for her, but she made some great strides forward ! She sat up multiple times and with assistance walked across the room to sit in her chair and back. For post op day 2 this is a great step! 

Unfortunately, because of the medications she is retaining a lot of fluid and having trouble being able to actually pee on her own, so they had to put a catheter back in for a couple more days. An X-ray this morning showed the fluid dissipated from around her left lung, but has gotten worse around her right lung. Because, of this her oxygen had to be increased today to help. 

Next big steps would be to get that fluid away from her right lung and slowly decrease her oxygen assistance to get her completely on her own. Her sugar was high, so she has had to get an insulin shot tonight. Hopefully, by tomorrow they can get her sugar count down and under control. 

Each day is a new day with new challenges to take on! She has not lost that spunk that has and will keep helping her on this journey. 

Thank you all for your prayers and keeping Evie in your thoughts. 



XOXO

Evie walking to and sitting in her chair