Doing Well

It's been awhile since we've updated the blog, so I thought I would share that all is well! Lila had a scan the week before Thanksgiving that was all clear! Next one will be in February.

We have been enjoying getting back into a "normal" routine with work and school. Lila started back to school on Tuesdays/Thursdays and she loves it! She has a wonderful teacher and lots of sweet little friends.

First Day of School Picture

Then she had her port removed! Not many surgeries are this happy. 

We also participated in the St. Jude Walk/Run to End Childhood cancer in Nashville in September. We were so thankful for all our friends and family who joined us! It was a fantastic morning. 

We are so grateful to be where we are now, but our thoughts are with friends who are still battling this beast.  We are also mindful of the chance of relapse but try to not be too weighed down by it. We are definitely thankful for every day.  

Good News!!

Dear friends, we're trying to tell everyone personally but if you haven't heard yet ... We got a great report from Lila's big scan on Thursday. Her cancer seems to be GONE and her heart echo showed no damage from the chemo. We should be scheduling her port-removal surgery very soon.

We are officially entering Surveillance mode! We will continue to do scans every 3 months for the first year, then step down the frequency as long as the results are good. And if the same tumor comes back, we are heartened to know that it has already responded so well to chemo and that Lila was able to tolerate the treatment. Also they're developing new treatments all the time.

She will likely need to remain on antibiotics for 6-12 months while her system recovers. She can get a flu shot but must wait to receive her regular vaccinations. We are relying on herd immunity to protect her from diseases like measles, smallpox, and whooping cough. (Please vaccinate your children.)

I didn't realize that good news can put you into shock as much as bad news can. On Thursday, Sarah and I just felt exhausted ("like a limp noodle," she said). But we are beginning to accept this good news and actually feel good about it. I guess the recovery is as much a process as the treatment was.

Right now I'm happy that Lila can just be a kid for awhile. No more needles or tubes.

We're very grateful for your many calls, texts, prayers, letters, meals, and positive thoughts this year. There are so many people to thank. (Does this sound like an Oscars speech?) This is not something you can survive alone, and our extended community has really rallied around Lila and us. Someday we'll try to put better words around our feelings of gratitude.

For now ... JOIN OUR TEAM!

The Duncan Friends team is raising money for St. Jude in Memphis (where Lila's surgeon worked for years). The walk happens September 26 in Nashville. You don't have to actually walk it, but we're gonna have fun with it. For us, it's both a chance to give back and a celebration.

Would love to have you join us! Let us know if you have trouble signing up under our team and we'll add you manually.

Summer

Well, it would seem this blog post is long overdue! I have no excuses other than there has not been anything much to report. The switch from weekly chemo to chemo every three weeks has been great! It has been nice to not be at the clinic so much, and I think it has helped her feel better overall. The first two treatments Lila received were half doses. This is because the radiation intensifies the chemo's effectiveness, so they do not need to use as much for 6 weeks following treatment.

The last time we went in for treatment, she got her first full dose since April. There are certainly days and moments when I can tell that she doesn't feel good, but for the most part she has no idea she has cancer. We have had a lot of fun this summer! Her hair was growing back in, but this morning before church I was pulling out clumpfuls, so it seems like we'll need to wait on that.

Lila's last chemo treatment is scheduled for this Thursday! We hope and pray it will be her last ever. August 20th will be a big day for us. She will have a CT scan in the morning to check to see if there is any evidence of cancer in her body. They will also do a heart echo to check function since one of her chemo drugs can cause heart damage. Prayers are appreciated as always. We have come such a long way since February! We are so grateful.

Dr. Lila at the Creative Discovery Museum

Sisters! It has been very special to watch them play together so much this summer. 

Chemo Countdown

Last week Lila finished up her radiation. We really didn't notice any side effects during her treatment which was wonderful! She also got LOTS of attention as she was the only pediatric patient for most of the time she was at the Vanderbilt Ingram Cancer Center. Every morning a pediatric anesthesiologist, an anesthesia nurse practitioner, and a pediatric nurse came across the street just for Lila. They were all so sweet and took great care of us along with the radiation team. Every morning I would carry Lila into the radiation room with the big machine, and the team had "Let It Go" playing on the cd player. This gesture got me teary-eyed more than once. It's very touching to see all these talented professionals care for your daughter and go above and beyond to make her comfortable and happy. 

Lila on Last Day of Radiation

The day after finishing radiation we had a follow-up with our surgeon. He thought everything looked great. He also showed me some very interesting/gross photos of the surgery. We took a group picture. Hopefully we'll see him again in a few months to take out Lila's port. We are so thankful for him.

The next day we went to clinic for chemo. We are now on a schedule for chemo every three weeks. She will have three more infusions and then scans. Our hope is that the scans will show "no evidence of disease" or (NED for those in the cancer world). In the meantime we are trying to enjoy our summer and have lots of fun!

I want to share a story to go with this last photo. Since her diagnosis, Lila HATES taking medicine by mouth. One big reason we had the NG tube for so long was so we could give her meds without her having them spit them out. Right now she only takes one medicine, Bactrim, and it's only given on the weekends. Every weekend we have a huge fight to get her to take it. I usually draw it up in the syringe and then chase her around the house--encouraging her to be a big girl, threatening her with going back to the hospital to get a nose tube again, and then finally she will take it with me giving it to her between sips of juice.  On Saturday, I had the dose drawn up and out on the counter. The girls were helping me with something in the kitchen, and I looked over and saw this:  

Callie was playing nurse and giving her patient medicine. Lila took the entire syringe with no fuss and no juice. I was in shock! On Sunday when it was medicine time I just gave Callie the syringe and she gave Lila her dose--no drama. 

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! :)

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. 

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):

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.

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!

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

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! 

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.

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!

Update

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!

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.

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.

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. 

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.