A few days at home

No huge updates to share. We are at home this week, settling in to the new normal of medications, feeding tubes, and cabin fever. I wish I could say that everything is super-awesome and we've got this situation totally under control. I don't think chemo works like that.

Lots of ups and downs. Epic tantrums. Medicine every 3 hours. Feeding tube getting yanked out every few days, despite our best efforts at taping. Lack of sleep all around. Kinda feels like we've got a newborn in the house.

Truth is, parenthood is difficult whether your child is sick or not. If you've got small kids at home, you know these ups and downs too. 

But we've got a lot to be thankful for. Great friends and family who are willing to sacrifice to make this work. Fine doctors and medical support. Food deliveries. And Callie is adjusting to her new role as big-sister/caretaker/inspirational speaker.

Having an iPad really helps. Also Netflix and princess dresses. Being at home is better for the patient's spirits than being in the hospital, but I do miss getting my daily caffeine dose from Suzie's Espresso in the hospital cafeteria (large latte, three shots, one sugar).

This afternoon is Lila's first outpatient chemo treatment. Hope that goes well. She's got a little hivey-looking rash that we are monitoring closely.

Back at Home

We came home today! And the best news is that we are without the Foley catheter! We could have gone home on Saturday, but we decided to do a 24-hour trial without the catheter to see if her bladder could empty on its own. The team was skeptical there would be enough shrinkage from the tumor this early to make a difference, but it seems like there has been change enough to let her bladder empty.
This is huge for Lila. The catheter was a big infection risk and also hurts her mobility. We're thrilled to have it out!

For the past few days we have been dealing with some huge tantrums. It's nice that she feels good enough to throw a tantrum, but we are hoping that we can get her back into a routine soon. Bedtime has been brutal. Last night at the hospital she screamed for an hour before we could get her to sleep. I'm sure the whole 6th floor could hear her. It's tricky because she is obviously going through a lot for a 2-year-old and for the past three weeks we have made her the center of the universe. But we need her to go to bed! And we wonder- is she in pain? is this a side effect of one of her drugs? or is she just being a toddler?

We have to closely watch her when she is upset because we don't want her to rip out her NG tube. Most of the time she's being very sweet though!

Turning a Corner

At last, Lila seems to be recovering from this rough week. Today we saw her smile a couple of times and play with some toys, neither of which she has done since we were admitted on Sunday. She is still not talking or eating much due to mouth sores. Her pain was managed throughout the day, so we're really hoping she will sleep well tonight!

She got another dose of chemo this evening. That's #3.

We also met with Physical Therapy today about her walking. She doesn't want to walk and is impeded by the giant catheter hose and bag attached to her. She has spent most of the past week not moving at all because she has been in bed and too sick to move around. They are going to be monitoring her because one of her chemo meds can cause walking issues.

Lila's hair has started coming out. Of course it's just hair, but it's still a little sad. It's been coming out quickly and was making a big mess so we gave her a haircut last night. The back and sides are clipped really short but we left some long in the front. It won't last long. While Luke clipped, she played with her new doll, Barbie's friend Ella who has a bald head and wigs and scarves you can accessorize with. One of the Vandy Child Life specialists gave Ella to us along with some ribbon to save a lock of Lila's hair. We really love Child Life!

Here she is in the playroom today.

Being Brave

Whew! The past few days have been intense. Our time in the emergency room was stressful for everyone. Lila had a high fever and looked very pale. They had trouble accessing her port and then tried to put in an IV, which didn't work. For future ER visits, they say we can ask for an oncology nurse to come down from the 6th floor to access her port (or request floating nurse Chris, who was our hero!).

There was a really sweet moment when nurse Chris finally accessed the port and there were about five people in the room with a couple of us holding Lila. She stopped crying for a moment and said, "I'm being brave!" We all agreed with her. What a trooper, huh? We were in the ER for five hours and it was so nice once we got into a hospital room again in what is becoming our home-away-from-home -- 6A, the myelosuppression unit. 

Yesterday Lila was in pain and still very pale. Her ANC was 50, which is very low. ANC is a good gauge of the body's ability to fight infection. Normal is well over 1000 and anything under 500 is low. They decided to give her a blood transfusion, which she tolerated well. They also did a lot of tests to try to find a source of infection. 

Today she is looking much better and her fever has been gone since about 9 p.m. last night. Her ANC is up to 450 and that should go up more today. We gave her a bath, which she hated (and I think I noticed some of her hair coming out). She is having a lot of pain from mucositis which is a side effect from one of the chemo drugs she took during her first round, doxorubicin. She has been drooling excessively and does not want to open her mouth. When she does talk it is really hard to understand her because she has sores on her tongue. We (including her caretakers) are trying to do better about keeping on top of the pain today. 

Snow day at Vandy

Lila had a fever last night so we ended up at the Vandy ER to be admitted for observation, which is standard for chemo patients. 

Waited a few hours there (and watched that SNL 40th Anniversary special) but now we are back on the 6th floor myelosuppression unit with our team of super-nurses and caretakers. 

They are treating her fever and trying to make her comfortable. 

So glad we got here before the snow. 

No fun pictures recently. But I understand that big sister is already awake and playing in the snow at her grandparents' house. 

Update: Lila is sleeping deeply right now. Rest is what she needs. 

Check out this now-bearded dragon from the play area outside. 

And this is the view from the floor above ours.  

Back at Vandy ... again, again

In the ER again tonight (Sunday). Lila's got a fever so we will likely be admitted for a few days. 

Poor girl is not feeling good at all. Just crummy. But we still have a few more levers to pull. 

And prayers are always, always appreciated. 

At least we got here before the snow. 

Back at Vandy this morning

Lila pulled out her feeding tube early this morning (Saturday) so we're back at Vandy to get that re-inserted. Her spirits are OK, not happy but still enjoying making cupcakes on the Easy Bake Oven app. 

Hoping this will be a quick visit and we'll be back home tonight. 

Update to the update -- Home again! Tube is back in and Lila is enjoying an epic, oxy-induced nap. Big sister is at home and we hope we can all hang out together this evening. 

Lila's still feeling puny but we'll find our rhythm soon. 

Discharged!

Our caretakers pulled some strings, moved a few small mountains, and got us discharged this afternoon. No pictures to share. It was a whirlwind, but we are now home. 

Lila was feeling crummy today. Partly because of her second chemo treatment. Partly because she's sad about the feeding tube. 

But she lit up when we hit the driveway. And when we walked in the door, she yelled, "Anybody home?!"

Tomorrow morning she will be reunited with her sister, which will be the best medicine of all. 

TryiNG Day

Today there was talk of going home again; however, when we met with the doctors this morning they said Lila's fluid intake goal was 28 ounces. Yesterday we tried really hard to push liquids and made it to 10 oz., so when I heard 28 was where we needed to be, I knew we were not going to make it. She needs extra fluid because of her kidney issues. And you can lead a toddler to juice, but you can't make her drink.
After lunch we decided that the NG tube was going to be necessary, as much as we didn't want it.
A particularly nasty battle to get her medicine down confirmed our decision, but that didn't make it any easier.
Actually getting the tube in was pretty traumatic. It took two attempts and three nurses. We had the music therapy lady in the room playing music during it all. Bless her heart. And poor Lila. Let's all pray that she leaves the tube alone because if we have to keep putting it back in...
Looking forward to going home tomorrow hopefully a restful night! Thank you all for your prayers and support!

Quick update

Hey all! Been a few days but right now we're waiting on some of Lila's bodily functions to return to normal before we can be discharged. It's possible we could go home today (Thursday). 

She did have a BM yesterday, which is a very good sign. She also ate a huge dinner on her own. We're pushing fluids and really hoping she doesn't need a nose-tube for feedings. She would not enjoy that. 

One complicating factor is that our patient is 2.5 years old and this age is very concerned with doing things their own way. Control is in short supply when you're in the hospital. 

This morning she had a huge freakout over feeding Froot Loops to mommy. She was thrashing and yelling and trying to crawl out of bed. The upside is that she got mad enough to walk herself around the room, which she was reluctant to do before. Call it anger therapy. 

So many unknowns in the coming weeks. We've never been through chemo with a young kid. How will that make her feel? How much should we isolate her from the "outside world" while her blood counts are low? How do we make sure that big sister knows we love her too, even though we'll be devoting a lot of attention to Lila?

Fortunately we have some great friends who have walked this path ahead of us, and they are willing to share their wisdom. (Did you know you can fry their Cheerios in butter to increase the caloric value?!)

They say having a baby is simultaneously the biggest change to your life and the most normal thing ever (happens thousands of times a day around the world). Having a child diagnosed with cancer is similar. On the one hand, this is a big deal for the Duncans. On the other hand, there are 20 kids on this same hall and thousands of families in Nashville who are living with cancer. It's a landscape you don't usually see until you're participating in it, but I read that 1 in 250 kids will be diagnosed at some point. 

I have some weird ideas of how to serve families during the acute phase of treatment. I may share those soon. 

We are so grateful for you. For our friends. Family. Nurses and doctors. Our home team. Even if you're "only" praying or sending positive vibes, it all accumulates into a great web of support that's really humbling for Sarah and me. We will never be able to properly thank you. 

Look at this smile. Lila loves stickers. 

Going home?

Today they said we might be able to go home tomorrow! In anticipation they stopped her IV fluids to see what she would take on her own. Unfortunately she only had a few sips. She is just not that interested in drinking and eating very much. Maybe because she's constipated? Maybe because of the tumor? This combined with her unwillingness to take oral meds may necessitate a NG tube put in before we go home. Honestly, this makes me sad. I have only recently come to terms with the Foley catheter going home with us and now the idea of another tube stuck in her making her less comfortable is a bummer. But at least we are talking about going home! 

We also met with a physical therapist today. Lila is very resistant to walk right now, probably mostly due to the catheter. We did get her to walk a little, but she wants to walk on her tip toes only. She actually was doing this the day we were admitted to the hospital. Hopefully this is something that will resolve itself when we leave the hospital so that she won't need physical therapy. 

She had an ultrasound today to check her kidney, and they are pretty confident that the kidney is not clogged, just sluggish. We also are still waiting on a bowel movement...

Lazy Sunday

Lila had some ups and downs today but overall was in good spirits! She ate a little bit and drank some juice. She slept well last night and took a good nap today.

We are still waiting for a good bowel movement. 

Today we had some issues with her taking her oral medicines. If she can't take medicine by mouth, they'll have to put in a tube, which we really want to avoid. Hopefully she will do better with them tomorrow. 

Tonight she has been really happy and talkative. Here's a little video of her doing some coloring with Daddy. 

The Recovery Begins

Today felt different because there were no scheduled procedures. Lila had a good night of sleep and woke up groggy and grumpy. She took a big nap in the morning. We had several visitors, including some awesome ladies who played songs from Frozen on the guitar and brought a basket full of Frozen swag.

We took a trip around the 6th floor in the wagon. Lila was not hugely impressed. She kept saying she wants to go outside.

Callie seemed really at-ease in the room today and even asked to return to the hospital after dinner. You can tell she's processing everything in her own way, which includes thinking of TV shows that she and sister can watch together when Lila comes home.

Around lunchtime, Lila asked for something to eat, which was a big deal. She requested mac & cheese, and KEPT IT DOWN! This meant that her NG tube could come out.

After the tube was out, she started acting like a different child. She was singing and asking to play with toys in the bed. The difference was almost instantaneous. We think she even smiled a little and she definitely cracked one of her "NO, DADDY" jokes to something silly Luke said.

She has been asleep since 6:00pm. We'll see if she goes on through the night.

Special shout-out tonight to our folks (Callie and Lila's grandparents), who are knocking it outta the PARK this week: Taking Callie to school and dance class, cleaning the house, tending the dogs, raking leaves, doing laundry, hauling boxes like a stevedore ... all kinds of above-and-beyond things to make this situation smoother for us. Love you guys!

Chemo Begins

After a fitful night, we were called down very early this morning for Lila's procedure. Here's our girl in the holding room looking skeptical.

Just after taking this picture we had some drama -- Lila pulled out one of her IV needles and as we were mopping up the blood, she vomited ... a lot. A few days ago she also pulled out her urinary catheter, which we were told probably couldn't happen. That tube was secured to her leg while her arms were in "no no" bags (velcro mittens).

She can be ... headstrong. We think this attitude will serve her well in the coming year.

We got everything cleaned up from the IV+vomit situation and they wheeled her off. The procedure went well and she got her portacath installed for easy chemo administration. They also decided to put in an NG tube (from her nose to her stomach) due to all her recent vomiting. They were not able to do any kidney testing as planned because the tumor was in the way. But overall it was a successful procedure.

We got back to the room and Lila dozed for most of the day. Her big sister Callie came to visit. A Child Life specialist from Vandy helped us explain to Callie what was happening with Lila in age-appropriate terms, and the visit was short but drama-free.

Since her procedure, Lila has asked repeatedly for apple juice and food (a good sign), but we can't give her any because of the NG tube. This evening her requests have increased and are so pitiful. They will be doing her first chemo treatment any minute now and the nurse just informed us that they give a steroid along with it that will make her really, really hungry. We are hopeful that we can get the NG tube out soon so she will be able to eat something. It may be a really long night. [EDIT: The fellow has allowed a few sips of apple juice and a few crunchy treats. Lila's first thought: Cheetos! Now she's wailing, "I need alllll of the Cheetos."]

We have moved! We are now on the oncology floor. They have stricter rules about visits, but we like being here with all the cancer doctors, nurses, and other patients.

Vanderbilt Children's Hospital has been good to Lila and to us. It's hard to believe that on Monday we arrived with just a bump in her tummy. Now on Friday -- multiple tests and procedures later -- we're starting chemo. That took some heavy-duty interdepartmental coordination, and we are very grateful for everybody's hard work. It's clear they really care about their patients as people.

We're also thankful for you. 2015 is going to be a challenging year for our family, but we know we're not going alone. Thank you for your many thoughts, letters, prayers, texts, wall posts, and visits. Sometimes when we're mopping up vomit, I feel my phone vibrate in my pocket and I know it's one of you saying that you're praying for us and love us. We won't be able to respond to every message this week, but they are all meaningful.

The Game Plan

Today Lila was pretty relaxed and sleepy due to the medicines she is taking. She did have some vomiting this morning which kept everyone busy changing her bed linens. Shout out to nurse Cathy and student nurse Sarah who were both AMAZING!!!

They have determined from the biopsy yesterday that Lila has an extra-renal Wilms' tumor.  I know that you are now all going to Google that, so I will help you out and direct you to a reliable website recommended by our doctor and you can CLICK HERE.  Lila's tumor is special in that it is extra-renal and not coming from her kidneys. This is really rare, but it doesn't change the fact that Wilms' tumors are very treatable, and her cells are favorable to treatment. 

Tonight we met with Lila's doctor who laid out her treatment plan. He is also going to be consulting with his Wilms' tumor buddies to get their opinions, so there may be some slight changes. Even though our oncologist and surgeon are pretty much Wilms' tumor experts and have treated them for decades, neither has seen one outside the kidneys. 

1. Chemo- They will likely start chemo ASAP after port goes in tomorrow. Doctor's guess was about 6 months of treatments. 

2. Surgery- after tumor has shrunk, they will go in and remove it. 

3. Radiation- they will need to do some pelvic radiation. 

Tomorrow morning she will have surgery to put in the portacath. While she is under anathesia, they will do an x-ray of her kidney to see if they need to put in a stint. Due to the mass, her bladder has had trouble emptying and the kidneys have had difficulty draining. We need good kidney function to do chemo, so it's good they can check this now. 

We are so thankful for all your texts, cards, emails, treats, and prayers! It makes a huge difference and is really helping us make it through. 

Every post is better with a photo, and since I don't have any good ones from today I'll share one from a healthier time back in December. 

Scenes and Thoughts from Vandy Children's Hospital

Last night, Brent from Under Great Lights was playing songs up and down the hall. He stopped by the room to serenade Lila and she was enchanted. Let's take Lila to a UGL concert when this is all in the past.

Lila ate five Popsicles and at least one homemade muffin before bed last night.

She can tell when something is about to go down. No hiding it from her.

The staff here is working so hard for us. The doctors communicate everything up front and let you ask as many questions as you need. They are able to give smart answers to dumb questions. Really impressed with this team and facility.

After surgery, a doctor came to check her vitals and Lila told her "thank you" in her scratchy little voice.

We had a post-surgery fever scare but she is normal now and sleeping so well, which is a great blessing.

We put Callie on speakerphone so she could sing Twinkle Twinkle to her sister. Lila lifted her head and said, "Callie is singing a song." We pretty well lost it. 

I met another father in the chapel today. His daughter Avery (3) was undergoing her first surgery too. We both marveled at the amount of support we're getting from our faith community and everyone who loves us and our kids. Then we gave each other permission not to "like" every comment received in the first 48-72 hours, though we are both reading them all. We are praying for Avery and her family too.

Lila's pre-K teacher Mrs Carol came to visit her today and Lila lit up like a light bulb (non-fluorescent kind, instant). Lila likes to give Mrs Carol hugs, which she tried to do immediately but got a little tangled in the tubes. We are all big fans of Mrs Carol.

iPhone still tries to correct Lila to Lola or LOL. One of those is going to slip through.

The one thing I'm really looking forward to is taking Lila to a playground so she can do the slides. Gotta get rid of these tubes first.

Short term I'm hoping she gets used to the Foley catheter. Catheter drama last night. Not gonna share those details.

A friend has offered to format this blog so it's easier on the eyes and easier to navigate!

We hope tomorrow can be about rest, recovery, and reconnecting with you awesome people who are supporting us so well.

A good friend in another state lamented that he couldn't be here in person. We decided that God is doing big things everywhere and we're just honored to play a part, no matter the size. Don't feel bad if you can't come visit. Your love is needed wherever you live.

It's just now sinking in that this will be a long journey.

Pray that Lila is comfortable.

She has always been a huge fan of doctor kits and band aids. Daddy is usually her patient. This has been great (unintentional) training for all the vitals-checking that happens here 25-30 times a day. She totally understands what's happening.

On December 31st, 2014, she put on these glasses and said, "I'm a doctor!"

Update after first surgery

Lila's surgery went well and she is now recovering and sleeping beside her mama. She has already requested a Popsicle. 

The tumor is malignant as expected, but we won't know about the exact type and stage until tomorrow or Friday. 

They were glad that the tumor is not coming from her ovaries or uterus. It is very vascular, however, and to remove it would have made her lose a lot of blood and they didn't want to put her through a stay in the ICU and a blood transfusion without knowing what kind of tumor it was. 

They have a first and second guess about the tumor type, and both respond well to chemo treatments. She will probably begin chemo as soon as some pathology reports come in (first one tomorrow, second one Friday, then a DNA test with results in 7-10 days). 

The chemo would be used to shrink or melt away the tumor with a surgery possible later to remove the remaining mass. 

We are so humbled and blessed by your prayers! Thank you for loving our little girl. 

First photo post-surgery. Sleeping good. 

Heading back for first surgery

[This is one of the early posts from Facebook, archived here for our friends without access to FB.]

Our little blur went back to surgery 15 mins ago. Very peaceful transition. Praying they can get the whole mass today.

I will post updates in the comments below. And we are starting a site for updates at http://duncanfriends.blogspot.com/

Head over and subscribe. We are thankful for the messages and prayers and texts. More to share later today.

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Update after first CT scan

[This is one of the early posts from Facebook, archived here for our friends without access to FB.]

Tonight's update: CT scan showed grapefruit-sized mass in Lila's pelvic region. No clue what it's attached to. 9am surgery tomorrow. Pray that tomorrow's surgery can remove it all, which is somewhat unlikely.

Lila had a rough hour after the scan but she is currently destroying some Popsicles and watching Barney on the iPad. Vandy is doing great for us and we love hearing from all of you.

Sad news today

[This is one of the early posts from Facebook, archived here for our friends without access to FB.]

Sad news today. We are at Vandy Children's Hospital with our youngest Lila. She has a mass in her belly and they're pretty sure it's cancer. Of course we're devastated but Lila's spirits are good. CT scan at 2pm today should give us more info on a course of treatment. Likely surgery.

Please pray for Lila, her test results, and the team here. She's in good hands and so are we.

The family is converging on Nashville and our church family is mobilized. We haven't told Callie yet but she is with her grandparents while she recovers from a slight fever.

I'm sure we will need you guys in the long run. For now just lots of prayers. We are so grateful for the support and will find a good way soon to keep everyone updated.