Evie's rhabdoid tumor fight

On August 4, 2023 Evie was diagnosed with a very rare and aggressive form of cancer , a rhabdoid tumor in her pelvis. We didn't know if it would respond to chemo - but it did! The tumor shrank enough to remove it in September. She then underwent 6 more rounds of chemo and 5 weeks of daily radiation. We were told from the very beginning if the tumor was to return it would be almost impossible to treat - and unfortunately that is where we are. We got the news yesterday when her end of treatment CT scan came back that instead of remission, which was obviously the hope, that it's come back bigger than before. It's grown very rapidly - her scans at the beginning of January were clean. It is pushing on her esophagus and stomach, as well as extending down to a little of where it was before.

We're looking into clinical trials, but really we need her to come home and be with her siblings who love her so much and can't understand what's going on.

I do believe in miracles - right now we need all the prayers we can get.

Update 2/28: Last night, Evie was baptized in the hospital chapel. She has been so alert and happy today! Right now she is ineligable for any clinical trials. Yesterday, the doctors predicted days, maybe weeks. Her platelets were decreasing rapidly and couldn't find a reason why. This type of tumor doesn't usually affect the bone marrow. Today her platelets have increased, but not enough for the trial. We decided to come home, with hospice, and go to Disney World tomorrow. Her siblings (9 year old twins and 5 year old twins) say she needs to get to meet Mickey - Mickey Mouse clubhouse is her favorite. And if you know us at all, you know we're huge Disney people! We won't be there long, but hopefully we will make some great memories. When we get back the plan is to go to clinic to see if her platelets will increase enough to make her eligible for the trial. I feel like I couldn't forgive myself if I didn't do everything I can as a mother for her, but I feel like at this point (and really always has been) it is up to God. No doctor will be able to cure her, but GOD CAN. Please keep praying for a miracle, and for comfort and peace for all of us.

Update 3/8: We had a really great trip to Disney World. I think Evie enjoyed it as much as she could- and started doing better after I put the NG tube in and feeding her more. The other kids definitely had fun, and I'm really glad we went. Even though the diagnosis and situation was never far from my mind, Disney did allow us to make some great memorie She's now breastfeeding occasionally, but most of her nutrition is now thru the tube. She has figured out now when I get the big syringe out I'm about to feed her.

On Tuesday we went back to the clinic and her platelets had increased, but not enough for the trial at Vandy. We plan to travel to Atlanta on Monday for a consultation about a clinical trial at Emory. If she's eligible (and on paper she is, he just needs to assess her) we'd have to go down for a day every 3 weeks for infusions, but all bloodwork and other things could still be done at Vandy.

Please continue to pray for her comfort and a miracle.

Update 3/15: We went to Atlanta Monday - it took all week, but Evie is finally enrolled in the clinical trial! We will go to Atlanta Sunday night for her appointment and first infusions Monday! Fortunately, it's only a 1 day thing and we should be able to come home Monday night. From there hopefully it will be every 3 weeks for 3 cycles then every 2 weeks for a year. Please pray it helps to shrink this tumor!