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
Thank you all so much for your thoughts and prayers! The outreach of support for Evie and our family has been absolutely amazing! Her story is being heard by so many and I am so happy it is inspiring others.
This will be our last post on Evie’s gofundme site, as we have had the opportunity to work with COTA(Children’s Organ Transplant Association). They are an amazing association that help children like Evie by helping with fundraising events, fundraising items, and her own website that we can share her updates on as well. The one thing that is different about COTA from Gofundme is your donations are tax deductible as they are a non-profit organization. We have also created a facebook page that we will keep updates on about Evie’s journey and recovery. I will put both of those sites below!
Facebook: COTA for Evie’s Freedom
The last week has been a tough one on little Evie. Starting on Monday she was looking more and more distended in her belly area. This only got worse with pain, uncomfortableness, and more distention. Her incision area started leaking a lot of fluid and on Wednesday they decided they needed to put her back on the operating table to open her up to get all that fluid out and stitch the incision on the inside together again, since they thought it had come apart. And they were right. A quick surgery to doctors was definitely hard on her little body. Since, she has had complications with her heart rate being extremely high for her( 140-160) continuously. Although, she in definitely in more pain, the elevated heart rate we have concluded is not due to pain. They did an Echo and an EKG on her heart to make sure it is functioning right, since it seems as though it is working extra hard. Her heart is working fine, she just has a tiny bit of fluid around her heart. The fluid around her right lung is back again. It was getting better, but like everything else it seemed to back track again. Since, her breathing was labored she was put back on the high-flo oxygen to help her. Her heart rate and respiration rate have not seemed to get any better since Wednesday.
Every time they give her more fluid it seems to just accumulate around her lung and abdomen, instead of staying where they would like it. So, they have been keeping her on lasiks to try and keep the fluid moving out of her system, rather than letting it sit there. We have been having her sit up in the big reclining chair and walk a little to help her lungs as well. She is so tough!
The last week has been a real struggle to get her blood sugars under control. After the surgery Wednesday, they really started spiking to the point where she had to get poked every hour! It was so hard to watch! So, yesterday they put her on an insulin drip, which eliminated the shot every hour, but they still have to check her blood sugars every hour. Finally, today her blood sugars are starting to become within range more often.
Also, Wednesday morning we got some news about her pathology, which is the diagnosis of the organs they removed. We all knew the cancer was starting to explode fast, so this is something we were anxiously waiting for. The doctor told us some of the lymph nodes they removed were positive for cancer along with some of the blood vessels in her stomach wall that they removed. This was not the news we would have liked to hear. Having the cancer not go to ANY of the lymph nodes would have been best, but at least they did remove all of them that were cancerous they think. With this information, the doctors think it would be best if Evie is able to start chemo as soon as she is well enough here in Omaha. They are hoping in the next 3 weeks. The cancer has shown that it is aggressive and if any cell is left anywhere, starting chemo as soon as possible is the best chance to kill it before it has the chance to grow/spread more.
We are really hoping Evie gets over this bump in the road and moves more and more towards recovery. Once, she is recovered from the surgery and stable enough she will have to start chemo right away. The road is going to be a long and bumpy one for Evie Mae, but she has amazing people fully behind her the entire way.
Thank you all for your support and prayers. You rock! Keep watching for the updates on Evie’s facebook and COTA site. XOXO
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.
i heard your birthday is coming, have a great birthday precious little girl!!! you are so adorable!! thoughts and prayers to you and your family!!
I am so sorry to hear this news. We will continue to send lots of prayers and hugs to all of you. Dina and Joe Piccioni
Conner, I am so, so sorry. There needs to come a time for this precious little doll to have all smiles and also for her family. Enjoy your time in Disney. Please know you and your family are in my heart always and praying that only sunshine appears in your lives soon and no more cloudy days. Love you Conner, Hugs and Prayers always. Lisa Zaputil XOXO
Taylor and family, What awesome news! She and all of you are for sure fighters. Hugs and prayers will continue for all of you. Love to you of you! Lisa Zaputil
Wonderful news!!!! Continued prayers for all of you☺
Thanks for the update! Awesome news!
Love you sweetie.
Still praying for all of you!