Lila

Lila

Saturday, September 3, 2016

4 Years Old

Lila rolled over the 4-year mark last month.


Her 12-month scans showed no evidence of disease, which is the best possible result. She's growing quickly. She's funny, smart, excitable, and more than a little wild. She's also gentle, sweet, thoughtful, and highly analytical. She coins a new word every day.

Skye is her spirit animal.

Lila's favorite person by far is her big sis Callie. They play together for hours: School, baking, Play-Doh, bubbles, water table, Octonauts, Paw Patrol, Minecraft, wilding out with GoNoodle, LEGO, and lots of princess time.

This morning Callie is teaching her pupil how to add and subtract. Quote from the den: "Momma, Lila is so so smart!!"

Also they fight and scream and other sister stuff. Not too much.

Cancer changed our little family but we're not rushing to process it and move on. It's a long recovery and you never really move on anyway. I don't think you're supposed to. But there is a point in the recovery process when you just want to be normal for a bit. That's where we're at.

We'll keep the sporadic updates coming if we can all agree that "No news is good news." Subscribe to receive updates by email. Love from the Duncans!

Callie's face!

Saturday, May 7, 2016

Better Days



The recent lack of updates means 2016 has been busy and good. Hair's growing back! More updates to come ... just wanted to let y'all know that we're still kickin'.

Friday, December 18, 2015

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.  




Saturday, August 22, 2015

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.



Sunday, August 2, 2015

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. 

Wednesday, June 10, 2015

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. 

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! :)