Tuesday, May 26, 2015

Radiation Begins

Today Lila had her first radiation treatment. After the full pathology report came back, her cancer was classified as Stage III, which is what we were expecting. They are doing targeted radiation to treat the area where the original tumor was (not the chemo-shrunk tumor), so it's not her entire pelvis, but it's close because the original tumor was so large and they add in a margin around it.

She will have five more treatments for a total of six. These are done for consecutive days except Saturday and Sunday, so our final day should be Tuesday. They will leave her port accessed until the weekend, so we have to be careful with that this week.  For those who don't know--the port is in her chest and it is accessed with a needle that runs into a flexible tube. The accessed area is covered over with a pad and adhesive seal, but we can't get it wet or dirty at all. This is a little bit of a hassle, but is preferable to having it accessed every morning this week. As you can imagine, she doesn't like having the needle put in!

The actual radiation treatment does not take long, but she has to be sedated so she will remain still. This means no food or drink when she wakes up, which is always challenging with a 2-year old. Even with the sedation, the process only takes about 30 minutes total.
Today she did not seem to have any side effects other than being a little more tired than usual.

Lila before her port access this morning.

Relaxing this afternoon 

Meanwhile, we have been busy! Callie's kindergarten play was last week and she had a birthday party on Saturday. She turns six tomorrow! We are very proud of her. The picture of her below is from the play. She was Golidlocks and did an amazing job! If you want to see the video of her singing, email me and I'll send you the link. It will make your day! :)

Monday, May 18, 2015

We're Home!

Lila had a great Sunday! She walked, played, and ate. We also had some visitors!

 Lila & Cousin Ava 

Today we were discharged from the hospital and made it home before lunchtime! Lila surpassed everyone's expectations with her speedy recovery. Our surgeon commented this morning that he expected that she would be there until at least Wednesday.  Her activity level is pretty much back to normal. She has all this pain medicine she can take as needed, but only had Tylenol early this morning and another dose before bed just because I thought she might feel worse when she was being still vs. running around.  It's really remarkable. Praise God! We are so grateful for our amazing surgeon, his team, the nurses, child life, and all the hospital staff. Although we hate being there, we really love the children's hospital. 

Playing hospital before bedtime

Tomorrow we will go to the Vanderbilt-Ingram Cancer center for a consult with the radiation oncologist. On Wednesday morning we are scheduled for her radiation SIM, which she will be sedated for. They will be taking images and measurements in preparation for her real radiation treatments which will begin after she has healed more from her surgery. We are still awaiting results of the full pathology report. 

Sunday, May 17, 2015

Lila Unplugged

Quick update from the room. Recovery continues to go well!

Yesterday Lila ate a half-dozen Popsicles, two bags of Teddy Grahams, a big bowl of mac'n'cheese, and some ice cream. Her sister came to play for a few hours and Lila really lit up.

This morning they removed her epidural and she's back on oral pain meds. Lila unplugged! I guess today we'll attempt to walk around the room, see how these noodle legs are doing.

Here's a short video from yesterday (direct link):

Friday, May 15, 2015

Surgery Day

Today was surgery day to remove the chemo-shrunken tumor from Lila's abdomen. It was the size of a grapefruit when we discovered it on February 2nd. Today it was like a large chicken egg.

Attempting a smile, though neither of us was feeling it.

Everything went really well! Lila charmed her surgical team before the procedure, and they drove her to the OR via Cosy Coupe. She went in smiling.

The blur

Her surgeon said the tumor was "gnarly" and was sticking to a few important structures. But he was able to remove it all and it doesn't seem to have permanently affected anything important. Kidneys good. Ovaries good. Ureter good. She lost a little blood during the procedure but not enough to warrant a transfusion. We expect a full recovery.

She slept for 30 minutes after. Upon waking she wanted to cuddle with a friendly member of the pain team. She then dozed on mama's lap for another hour while they readied her room and got her unplugged from everything. Because they're using an epidural to control her abdominal pain, they could use less general anesthetic and she was sharp and alert within a few hours.

Once we were safe in the room, her usual stubborn personality came roaring back, which we were relieved to see. She asked for food at least a hundred times, which was difficult because she can't have anything by mouth for 1-2 more days. She sat up in bed and worked on Play-Doh. She Facetimed with her cousins, played with some apps, and was asleep by 8pm.

Post-surgery Play-Doh chef.

Next Steps

Recovery at Vandy over the weekend. Hopefully lots of sleep.

They biopsied some nearby lymph nodes and also sent a tumor sample to pathology, which will help determine her upcoming course of radiation and follow-up chemo to knock out any remaining cancer cells. Radiation will likely begin in two weeks and run for 7 consecutive days. (Side note: The Duncans are no strangers to this wonder of the atomic age. My dad and granddad both worked many years at the Oak Ridge National Lab, and I did two rounds of radioactive iodine a few years ago for my thyroid.)

Special Thanks

We were feeling more than a little jangled going into today. "Like a bundle of nerves," Sarah said. 50-yard stares for weeks. Our church set up a schedule so that someone would be praying for us and Lila all day, and we know there were many prayers and good vibes coming from elsewhere too. So many! Thank you guys for everything.

And what a great team at Vandy Children's Hospital. We don't thank them enough here on the blog. We can't thank them enough. They are a rare combination of professional and wicked smart but also compassionate and just goofy enough to put Lila at ease. Really impressive group of people and they're right here in town.

Thursday, May 14, 2015

Big Day Tomorrow!

Tomorrow's the day! We met with our surgeon on Wednesday and feel as good as can be expected about everything. The scan last week showed that the tumor is (slightly) smaller than it was 6 weeks ago.
Surgery is set to start at 11:30 a.m., and he estimated that it will last at least four hours. The location of the tumor is a little tricky--there are a lot of blood vessels around it, so hopefully they can remove it without her losing much blood.  They will also remove lymph nodes around the tumor for testing to see if they contain any cancer cells.  These results along with the full pathology report of the tumor will help to determine the scope of her radiation plan which will start soon after surgery.  The surgeon is also going to attempt to move her ovaries temporarily so that they will be further from the direct focus of the radiation. Isn't that amazing?
We will be looking at several days in the hospital for recovery.
We are so thankful for all the love being sent our way! Your prayers, comments, texts, cards, and support mean so much to us. Our church family has set up a prayer schedule for most of the whole day tomorrow, and I know they will be joined by folks in Knoxville, Mississippi, Oklahoma, and beyond!

Saturday, May 2, 2015

Countdown to Surgery

Lila has been doing really well recently! This was our first week since beginning chemo that Lila did not get a dose because are preparing for surgery.  Lila will have a CT scan on Thursday. The following week we'll meet with the surgeon, and then Friday, May 15th she is scheduled to have the tumor removed. Once she is recovered from surgery, she'll do 12 more weeks of chemo and probably some radiation.
Here are some pictures from the past few weeks!

Warner Park

The Zoo 

Dance Recital