Lila

Lila

Tuesday, April 14, 2015

April

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! 

Thursday, April 2, 2015

CT Scan Results


Today was the big CT scan and I won't keep you in suspense ... the tumor has shrunk significantly. From 10.34cm down to approx. 5.5cm. Our science-minded fathers tell us that's an ≈80% drop in volume/mass since February. Not bad!

In fact, it's shrinking so quickly that we will likely postpone the resection surgery until it gets much smaller (or stops shrinking). Her kidneys are looking great and we have shifted her chemo plan into a less aggressive gear. Instead of giving her all three chemo drugs at once to blast-shrink the tumor, we are now spreading them out more evenly.

Here is a short video of Lila singing the ABCs while receiving chemo at Vandy today.

video


In sleep news: It ain't happening. Something's up with her ... something. Seems like a medicine reaction. She's got the jimmy legs. And occasional bad dreams. We've got a few things left to try but poor Sarah is taking the brunt of the sleeplessness, as nothing short of mommy's full attention will comfort the child. Your prayers in this area are greatly appreciated.

In food news: You guys are good at this. We love cooking but it's hard to get everything together these days. We appreciate your ongoing support and all the incredible meals you've been bringing. If it weren't for you, we would probably be eating cereal six nights a week (and pizza on the seventh).

In other support news: These maniacs dug up our bushes!!


I mean, sure, they were the same aggressive, ugly bushes we've been trying to kill since we moved in. But Sean and Ellisha Williams actually convinced these fools to show up with shovels, clippers, a pick-axe, and 4 other friends (not pictured) + 2 parents (also not pictured but it was John and Pam visiting from Searcy!) and dig them all up. They mulched. They trimmed some trees. Then Chad Anderson came and hauled everything away and swept the driveway clean. So great.

In church news: We almost made it to service last weekend. We were all dressed and driving toward the Cannery Ballroom when Lila made it clear to us that she really didn't feel good and could we please go home. We negotiated and ended up at Cracker Barrel instead, where Lila gorged herself on about 500 calories of mac-and-cheese (big win).

Here she is decoding this puzzle from the kids' menu. Too easy.


And finally in Easter news: EGGS! Our Ethos house church put together a huge egg hunt in a public park last weekend and both girls were feeling good enough to participate. We love to see them playing outside and just being kids.



I'm starting to understand what it means at the end of John: "Jesus also did many other things. If they were all written down, I suppose the whole world could not contain the books that would be written." There are so many cards and gifts coming in from so many quarters  not to mention food and supportive texts/emails  that we could never fully express our thanks to all of you. There are not enough pixels on this blog ...

Thank you all for everything. It really helps!