Surgery Scheduled

Ava's surgery (to remove Beatrice) is now scheduled for Friday, September 6th at St. Jude.  Holly, Ava, and Big Bo will be flying back to Memphis on Labor Day and I will drive there later that week, before the surgery.  We are all a little bit anxious - Ava especially - but are so glad to finally have a date on the calendar to get that thing out of her stomach!  Bye, Beatrice the Rude Tumor.

We don't know how long they'll be staying in Memphis this time.  The estimated recovery time from surgery is two weeks, which puts us up against the timing for the next round of chemo, so it may work out to stay at St. Jude for #4.  We are unclear if the gap between the rounds will become longer, due to the surgery.  Once again, a lot of unknowns.

What we do know is that being home has been so good for Ava.  She bounced back from this last round of chemo more quickly and her spirits and energy have been extraordinarily high most of the time (considering all things).  Several people have made the comment that if not for her bald head, you wouldn't be able to tell she has cancer, because she is so energetic and spirited.  She has gotten to sleep in her own bed, see friends and family often, play with her own stuff, and just be connected to regular life.

We are so thankful for this time and incredibly grateful for those of you who have made it possible for us to be fully present with Ava during this time period. 

Round 3 Summary

Ava went through Round 3 of chemo here over the weekend and it was significantly rougher than the previous two.  However, it was lovely having family and friends come visit and so, so easy to come home afterward!  The time flew by. 

The photo above is from our visit to the St. Jude affiliate to get her chemo shot on Monday.  She was really anxious about it, but did great! The wonderful staff there spoiled her with gifts and a cake for her birthday. 

Monday and Tuesday were tough days in terms of lethargy, exhaustion, and nausea, but I think we are over that hump and had a much better day today.  Overall, we are so pleased with Ava's response to the chemo and how she is doing. 

Its been very busy for us as a family, with all three of our kids birthdays this week (!), but we are soaking up our time as a family here together.  Feeling so grateful. Thank you all for your prayers and support.  It means so much to us. 

Welcome Home

Ava received the most amazing Welcome Home on Wednesday.  Our street was lined with friends, family, and members of our community - some of whom we have never met.  They were holding signs, wearing glowing/flashing everything, and just clearly filled with so much excitement that our girl was home.  Ava, Lily, and Bo rode in the back of my truck and waved, like celebrities. 

(If anyone wants to offer tech support, I might be able to upload the amazing videos of the evening.) 

It was a truly moving and amazing experience to feel so loved and so much a part of our community in a way that we had never felt before.  Of course, Ava did NOT mind the attention and hoopla and was overjoyed to see her people. 

I want to thank each and every person who showed up and for all the other people who supported us from a distance - this experience was one our family will never forget.  I am filled with so much emotion as I remember it. 

For Our Pray-ers Out There!

Here are is an updated list of things we would love for you to pray about (our send positive thoughts, or whatever you do to send love).  Last time I wrote out a list, our request for a change in living quarters was answered the next day!

1.  Most importantly, please pray for Brinley (above).  She and her family have become dear to ours and she will be facing a much longer and more difficult journey than Ava's.  

(Can I tell you a little bit about Brinley?  She is sassy, and energetic, and friendly, and kind to everyone.  She was one of the first kids we connected with when we were at Tri Delta and is now Ava's good friend.  She loves to color with Ava and they play so well together.  She is precious and we care about her a lot.  And, just take a look at that smile!  We have really grown to love her and her family, in case you can't tell.)

Thank you for praying for our friend.

2.  For safe travels tomorrow for Holly, Ava, and Lissa as they fly home, and for Big Bo as he drives our car full of stuff home.

3.  For re-integration in our home for our family to go smoothly.

4.  For Ava's continued healing from this disease.

With gratitude,
Casey

Fierce (and Brave)

As I was preparing Ava's room for her return, this poster caught my eye.  Ava's walls at home are covered with inspirational quotes, motivational quips, song lyrics, and excerpts from Bible verses.  All were created by her except this one - I made this for her birthday several years ago, in a massive rush the night before.  Holly and I decorate the house with streamers and small posters on our kids' specials days and she has kept this one on her wall.  This quote (from good 'ol Willy S.) reminds me of Ava because she is small, but in physicality only.  Her spirit is fierce, and this poster/quote ultimately inspired all the campaigns describing Ava's fight against cancer: Ava Fierce and Brave.  She has definitely lived up to this description.

We are so ready for our family to be back together again.  We feel so fortunate that it is a possibility and are incredibly grateful that her treatment has been successful so far.  We do not take for granted that many families are kept apart who are engaging in similar battles with disease.

We also know - and want to make sure that you know, as well - that Holly and Ava at home may not be a permanent thing.  When she goes back to St. Jude for surgery the week after Labor Day, we are unclear how long she will be inpatient and if she'll come home again for her subsequent courses of chemo.  In this marathon, the one thing that is certain is that nothing is certain.

However, for now we are practicing our gratitude because we'll be together for a lot of days in a row and we will choose to be present in these upcoming days.  I know that separation has made me so grateful for the shape of my family and I won't take our time together for granted anytime soon.

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On a different note, just a few little FYIs.  If you see Ava around, she'll probably have a mask on.  She's not very self-conscious about her bald head or her safety requirements currently, but please be sure to be positive around her.  (For example, please don't say, "your hair will grow back soon and be so pretty again!" or statements with similar sentiments.)  She thinks her shiny head is super cool and we do too.   I'm sure there will be an adjustment period since she is used to being around a bunch of other bald kids, but with your help, I'm sure she will adapt.

Additionally, it's ok if you hug Ava (with her permission, of course) because currently, her immune system is high enough to interact with others.  This may change after this upcoming round of chemo and I will be sure to post updates regarding her status.

Last thing: please give us a heads up if you're planning to stop by or visit at the hospital and know that we may need to tell you it's not a good time, for various reasons that may occur during treatment and recovery.  Holly and I trust that you will believe us when we say it's fine and that you won't take it personally if we rain check.

That's it for now - I'll try to post another update in a couple days.  Thank you to each person who cares enough about Ava and our family to check in on us via this blog.  We are amazed at how many of you are out there and so overwhelmed by your kindness and generosity.  Thank you. 

NEWS: Good

Ava's scan today revealed really, really good news:  Beatrice the Rude Tumor has shrunk by almost 50%!  The first scans done on June 26th measured Beatrice at 10.5 cm at the largest width and she/it is now 6 cm at the widest point.  Additionally, the cancer has disappeared in one of the lymph nodes which was problematic, but another one may still have some bad cells.  If I heard correctly (via speakerphone from East TN), they were unable to get a good look at that second tumor and may remove it during the surgery. 

In terms of scheduling a surgery, it sounds like we won't know a particular date until next Wed., but we do know that it will not be until three weeks after the third or fourth course.  This means that the earliest that surgery will occur will be early September, but could be as late as October. 

Practically, this is great news for our family - it means that Holly, Ava, and Big Bo will be coming home on Wednesday!  Ava's 3rd course of chemo will be scheduled at the St. Jude affiliate in JC at the end of next week, and she will probably receive the 4th course there too, depending on what the surgeons decide concerning timing.

We are thrilled with this news.

We also learned today that Ava will not be attending her beloved elementary school until the chemo is complete, and then, only if her numbers look good.  It sounds to me like that means a return to "normalcy" sometime in late October or early November.  Until that time, she will have a homebound teacher and though she is very sad to miss so much of the school year, she would rather be homebound here than in Memphis.

It's been quite a rollercoaster today and we are all exhausted.  However, we have felt your prayers and support and have made it this far because of you.  Thank you.

Please post any questions you may have in the comments below and I will respond when I get a chance! 





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Sunday Night

Local Friends, please come support Ava on Sunday night at Jiggy Rays in Elizabethton!  Cover charge is $10/pp and all proceeds go to support Ava.

If you don't know Jiggy Rays, you don't know about the best pizza and salad bar in Elizabethton.  The kind owners are opening especially for us during this time!

Also, our favorite local band will be playing.  The Green Rumours are a country/folk/americana duo who recently recorded in Nashville and are on their way to big things.  Their music is beautiful, includes both covers and originals, and will appeal to all ages. 

Bo, Lily, and I will be there - so come give us a hug and enjoy some good food, music, and spirits!

Wednesday Reunion

Ava's beloved Memom arrived in Memphis today to be with the family for the next week!  What a blessing for her to be there with Holly, Big Bo, and Ava during tomorrow's appointments. 

After we hear any news, I will try to post on this space as soon as I can - just know that it won't be until late afternoon. 

In other news, Lily and Bo start school tomorrow and are looking forward to their first day.  I am not teaching this semester, so that I can be available to travel back and forth and will resume some of my landscaping jobs in late August/early September.  Holly and Big Bo's jobs are on hold currently.  I am sharing this information because I'm sure everyone is wondering how families "do" this.  Answer: it's not easy. 

We are so thankful for your continued support in all the ways. 

First of 5th and More

On Monday, Ava went to her First Day of 5th Grade at St. Jude!  She was unexcited about it in general because she wants to be with her friends, but the call we got immediately after was from a VERY excited girl!  She said she loved it and was especially thrilled to have homework! My understanding is that she'll have class 2-3 times a week - her teacher at St. Jude is working with administration here to make sure she stays level with her peers.

Thursday is a big day.  Not only is it a day full of appointments, but we are hoping that the scans provide the Drs/surgeons with the feedback they need to make decisions about potential surgery and doing future chemo rounds in JC.  Most importantly, we are hoping that the cancer is gone from Ava's lymph nodes and that Beatrice the Rude Tumor has shrunk enough for the surgeons to feel confident in a successful surgery!  Please pray that there are clear answers on this day - we are putting a lot of hope in these appointments.

In terms of what's going on with our family: after a week in Michigan, I am home in East TN with Little Bo and Lily, while Holly and Big Bo are remaining in Memphis with Ava.  This separation is difficult for all of us.

While we were away for the last month and a half, so many amazing people took care of our children, our pets, and our home and we are so incredibly thankful for the ways that our community has shown us that we belong here and that we are loved.

Thank you all for your prayers and love that we receive each day. 

Ava is doing pretty good after her second round of chemo. Still feeling nauseous at times and gets tired more easily. She has lost some weight which is to be expected. Next Thursday is a big day for Ava!  She has scans to see if the chemo is working and there will hopefully be some talk about when they can schedule surgery. She will have a least two more rounds of chemo too. Thank you everyone for all the love and support.💚💚💚

By the way, this is Holly if you couldn’t already tell from the way this blog is written 😬