Tuesday, April 14, 2015


We had a wonderful Easter with family! We also made it to church as a family for the first time since Lila's diagnosis. It was a great time.
Cousin Fun in Kentucky

Easter Sunday

Last week went mostly well and sleeping was better. On Monday night she sneezed out her NG tube! Since we have really only been using it for meds for the past few weeks, we just left it out. Lila really wanted it back when it was time for her medicine, but she has been doing a great job taking them by mouth like a big girl! It helps that there are less to take every day since the scan results. 

No More Toobie!

Also in the photo above you will notice Lila is holding her "Kitty." This is actually a lovey with a bear head attached. She calls it Kitty, and Kitty is very, very important to Lila. The day we were at the hospital for Lila's scans, we lost Kitty. It was very sad. Calls were made to Lost & Found and the hospital linen warehouse. Lila cried. I may have cried. But thanks to Ebay, Kitty has been restored. This version of Kitty looks the same but is much cleaner and less worn. We told Lila that Kitty got cleaned and looks shiny and new after her hospital stay. The reunion was sweet! 

Thursday morning Lila had her weekly chemo infusion, and in the evening she had fever. This is the second time that she has had an evening fever following a morning chemo infusion. We headed to the ER Thursday night to get blood cultures and antibiotics. Since her counts were high enough, they sent us home (her white blood cell count was high enough to fight the virus or infection). Unfortunately, she still had fever 24 hours later so we had to go back the next night for more cultures and antibiotics. Friday night in the ER is crazy! We are very thankful that even though they were extremely busy, they found us a place to wait away from everyone's germs and got us into a room as soon as they could.  We were released again Friday night, and thankfully she woke up Saturday with no fever. Whew. 

So that's where we are now. Taking it one day at a time and looking towards another round of scans the first week of May with surgery likely sometime mid-May to get the tumor out. Thank you all for your continued prayers and support! 


  1. Awww Kitty. How sweet! Glad sleeping has improved and praying that continues!

  2. Heart warmed by such and encouraging update. Keep fighting the good fight! Much love.