Sunday, March 22, 2015


It's been a week since we updated the blog!

Thursday morning we went in for Lila's weekly appointment and chemo. She felt well all week, but Thursday I could tell that her energy was down. Her doctor noticed as well. Her blood counts were okay; her hemoglobin was low, but not low enough for a transfusion. Lila fell in love with her nurse, Bonnie. It was so cute, and before we left Lila raised up her arms for Bonnie to pick her up. Bonnie took Lila all over the clinic and Lila was giggling and having a great time. The nurses in the clinic are amazing! We appreciate them so much.

Lila did not get a CT scan Thursday as previously thought. The only time they had available was in the afternoon, and there are restrictions on eating/drinking before the scan. We didn't want to deprive her all day. The scan will now be on April 2nd at 8 a.m. Surgery will be tentatively scheduled for the next week.

After the appointment, we went for a donut treat.  I think you can tell from the picture that she doesn't feel too hot.

Once we got home, Lila took a long nap and woke up in the evening with a fever of 102+. Anytime she gets a fever, it has to be checked out so they can rule out serious infection. If it's during the day, we can go to the clinic, but since it was after hours we had to go to the ER.  Big sis was whisked away to stay with her grandparents and we checked in about 7 p.m. Our experience was much better this time--port access went smoothly, they drew blood cultures, she got some antibiotics, and we were home by 10:30. After they gave her Tylenol, she felt great! She was walking around the room, singing, and being cute. She wanted to take a picture of me wearing a mask and then she wanted me to take a picture of her wearing it. Dad was here as well, but I don't have a picture of him.

Friday she felt better and had no fever. Saturday was a beautiful day so we decided to get out of the house and go to the zoo! We got there right when it opened which was good since it was getting very crowded as we left.

This morning we were planning to all go to church, but Lila woke up at 4:30 and had a huge fit. We'll try again next week!

Saturday, March 14, 2015

Feeling Good

Lila has been doing really well! We had our weekly clinic visit and chemo on Thursday and her counts were good. They compared them with where she was at the same point during the last cycle and everything was much higher. It's also obvious from her behavior and energy that she is feeling better than last time. Her appetite is also pretty good. So far, no sign of the dreaded mouth sores!

Here we are waiting for the doctor on Thursday. 

Next week they will do a CT scan to check her progress. It's hard to believe, but we'll be six weeks into the protocol at that point. Even though a CT scan is quick, she'll have to be sedated because of her age and the fact that she wouldn't be able to keep still. We don't know what day or time it will be, but we're hoping early morning since she can't eat or drink for 8 hours before.

If the scan shows that the tumor has not changed in size much, they will do surgery to remove it the following week. The doctor said he would go ahead and schedule the surgery because if we wait it might be hard to get her in and the timing is important because of the chemo regimen  and issues with counts. If the tumor has shrunk significantly, they will postpone the surgery for another 6 weeks. The smaller the tumor, the easier the surgery and recovery.

Tuesday, March 10, 2015

Approaching the Nadir

Time to drop some science on all y'all. In chemo parlance, the nadir (pronounced like Ralph Nader), is the time after chemo when the patient's cell count is lowest, which means they are the most immunocompromised. It's your low point. For Lila's particular cocktail of drugs, the nadir usually arrives 10 days after the BIG dose.

Because she got her BIG dose last Thursday, we are approaching her nadir this coming weekend. The last nadir happened while we were in the hospital. Its effects were complicated by surgery recovery and general stir-craziness, so we're not sure exactly what to expect this time.

But that last nadir was a doozy. Her entire GI tract developed sores, which meant she didn't open her mouth (literally) for 4 days. No swallowing, drinking, or anything. Just drooling out the corner of her mouth and feeling listless. We were most grateful for the feeding tube at this time, which can also be used to administer medications and and keep her hydrated without an IV. Her counts were so low, she ended up needing a blood transfusion to help her recover.

Behaviorally speaking, Sarah and I become germ nazis as the nadir approaches. Want to grab lunch? I'm gonna need a blood sample first (kidding ... mostly). Callie has to change her clothes after school and the VERY FIRST thing we do upon returning home is wash our hands. And then maybe wash them again.

We also give her a shot of Neupogen in her thighs every day. Neupogen is like fertilizer for her bone marrow and helps her body produce new white blood cells. It's a small dose through a tiny insulin needle and really only hurts when it's going in. She is very brave about it, usually crying but not thrashing or pushing us away.

That concludes our lesson. Quiz next time I see you. Key concepts: Nadir, Neupogen shots.

Lila's spirits have been high recently and she has been full of energy and good cheer. Her belly is noticeably smaller too. Y'all be praying that she sails through the coming low point without incident. We may not be out-and-about much in the coming weeks, but we are so grateful for all the emails, texts, meals, and more. You guys are pretty great.

Lila loves to take selfies.

Oh yeah, and we have this other awesome kid too. She's reading everything in sight these days. She's also learning to ride a bike but keeps getting sidetracked by the need to draw road signs on the driveway.

After she drew this one, she looked up at me and said, "It's not the best diamond ever," and we both cracked up.

Friday, March 6, 2015

Sno & Chemo

Yesterday we ventured out into this winter wonderland for Lila's big round of chemo...

(This is Franklin Road.)

We left after lunch and made it just fine! The weather made for a very quiet clinic. We are realizing how fortunate we are that we live just down the road from a world-class children's hospital. Our nurse told us there was a patient there that morning that had come from Johnson City, which is about four hours away. We are so grateful that we are only 15 minutes away! Or 30 minutes if there has been a snow storm. 
We managed to make it out in two hours, which is really quick. Lila received three chemo drugs plus steroids and some fluids. She was really hyper last night from the steroids and kept saying, "I'm happy! I'm happy!" 
We won't see the low point from this cycle of chemo until 11-14 days out. However, I can tell that she is already a little fatigued because she took a nap today. This is the first nap she's had since coming home from the hospital. I also got a nap, which made it a wonderful day. 

Monday, March 2, 2015

Life at Home - One month anniversary

It's been a month since Lila's initial diagnosis. We now regularly say things like vincristine and cc's (as in, give me 3cc's of Bactrim). We have advanced opinions on the operation of our feeding pump. And we have an IV pole in our house.

We've spent about 3 weeks in the hospital but have been home now for a week. It's surprisingly difficult to keep this blog updated while we're at home. Just so much going on. But Lila definitely prefers life at home.

Her sleep schedule is a mess, which means ours is too. Grabbing naps whenever we can. She keeps asking to go sit outside at crazy hours. Once even in the rain. The request is beyond reason and it's best to comply to avoid the inevitable tantrum. I guess we're operating in survival mode. Even big sister understands that sometimes it's better just to hand over the special Tinkerbell mug than face a 2-hour tantrum.

But most of the time Lila is sweet and lovey. She hands you the end of her feeding tube when it's time to take meds. She even helps push the plunger on the syringe.

Good news is that she's almost completely off her pain meds from the initial surgery and tumor pain. Less exciting news is that her next BIG dose of chemo is this Thursday, and that comes with 10-12 days of side effects. We'll be watching her closely to make sure she's comfortable.

We're getting all kinds of excellent advice and encouragement from my former classmate Marianne whose young son Hugo is nearing the end of his long course of treatment. Chris and Marianne are better about updating their supporters than we are: GO HUGO!! (And they sent us a gift card to Plated! I mean, guys, you're too kind.)

It's hard to get pictures because she won't sit still. Here she is building a castle from blocks. And below that a few shots from a special delivery of handmade friends from the Professional Bohemians.