Shout Out Sunday!

 Let's give a few shout-outs for all the good on this Sunday!

For those whom we've lost touch with some the past dozen years, I'm currently serving as the Director of Children and Family Ministry at Knollwood Baptist Church.  This is the church I grew up in, was baptized in, got married in, and who has carried us through lots of life.  I love her deeply.  Being in the professional role the last several years to nurture their Children and Family Ministry has been one of my life's greatest joys. 

I knew it would be a big and emotional day at church for my family and my church family as the last bit of news trickled out to everyone.  I'm so thankful for the tender care and gentle mercy that seems to have been surrounding everyone as other folks had to share news with all the children in that congregation who are "my kids." From the video clips and the time for children, and hymns and prayers and sermon.... the chance to feel connected through Livestream with a good hard day was really dear. 

Today after Sunday School and Worship was what we call a "BIG EVENT" day.  Summer kickoff - huge meal, party, activities, inflatables, treats and more.  Like a week of VBS rolled into one afternoon.  So, I'd been planning and prepping for it the last month or so, and then on Wednesday quickly started handing it over to the lay leaders and other staff to seal the deal with final execution.  By all looks, y'all had a terrific afternoon.

1) SHOUT OUT to all of the volunteer leaders for stepping up to the plate in such huge ways to make sure those kids all had an amazing Aloha Summer. I loved seeing all the photos and felt such love for this community.   I HATED not being there and also LOVED knowing that you all had it completely under control even without me.

2) SHOUT OUT to a hot shower.  Finished the first 24 hour bag of chemo and had a short break off the pole to get cleaned up and changed and hooked back up again, and that felt like a great celebration!  Day 2 is now rolling....

3) SHOUT OUT to my dad and his wife who drove three hours each way just to lay eyes on me.  His sister (my aunt) was diagnosed with AML almost five years ago and was treated successfully right here on this unit.  She's just a few months away from hitting her "cure date."  It was good to see some family and be reminded of what strong stock we come from.  Sorry, leukemia - you're barking up the wrong tree.

4) SHOUT OUT to Lufthansa Airlines for getting my mom back from Portugal and into this room to see me today.  It was not a great place for her to be when this hot news broke.  I know she's exhausted, but it was so great to be in the same room with my person again.  Savored my visit with her and loved getting to be loved like only a mama can do.

5) SHOUT OUT to Cheerios and milk and yogurt parfait and bananas and leftovers from that church lunch.... I am grateful to not be nauseated and to be able to get some food down and energy up.

6) SHOUT OUT to codeine cough syrup.  The cough (and cough + fluids to be real) has been my biggest challenge and finding a combo of meds that seems to help with that is giving me hope that I might get some better rest tonight.  The adrenaline is wearing off some and the steroids are being D/C'd, so I feel like I'm switching gears a little to a more maintenance jogging pace than the initial sprint we started with.  

7) SHOUT OUT to Golden Girls.  When you can't sleep, they're always on.  Never take it for granted.

8) SHOUT OUT to low medical news day.  Things are pretty stable.  No huge side effects right now.  We're just going to keep trying to find some routine (hospital! routine! ha! joke's on me!) and develop some schedules for rest and renewal.  Pray I get some consecutive hours of sleep tonight and that all those meds are continuing to knock down COVID while also knocking out leukemia.  Double duty, here. 

I'm pretty behind on messages and responses and I know you all understand.   Keep them coming and know they mean so much to me.  You are the best village so SHOUT OUT TO YOU!

Five Good Things

 So, I'm going to try to distill today into a few - Five - Good Things.  (and maybe a few complaints interwoven too, to keep it real)

1. The girls got to come visit after school!!!!!!  It was really really really REALLY good to give them snuggles and hugs and let them see me while I'm pretty healthy and see my room and my beep boop pole and my room service menu and just get to be in my space.  We talked about their days and how their amazing teachers and friends had been helpful and kind to them and we watched the Netflix show we've been watching together the last month or so, called Alexa and Katie, which serendipitously is a teeny bopper show about two girls starting high school who are best friends and one is going through cancer treatment.  It was already in our rotation and helping to build their understanding of cancer and treatment in a very non-threatening way that we could talk about.  So if you have (upper elementary/middle grade) kids in my life who you're trying to help explain Mrs. Chrissy's sudden change to WORST SUMMER EVER, you might enjoy watching that with them, too.

2. I took a shower.  And shaved. And removed stickers and tape from my body.  It was a very hot shower.  It was a delight.  And then there were clean sheets.  Say no more.

3. I really wanted to get that bone marrow biopsy over with so I'd be less anxious and worried about it since they'll be a regular part of monitoring progress during treatment.  Even with the gentle buzz of Ativan and despite lovely, kind highly trained and capable people, my bones were simply too strong.  The one working on me said, 

"I have done this for 39 years and have never seen such strong bones.... Do you walk a lot?" 
"Yes, I do.  And take calcium and vitamin D and do yoga and lift weights." 
"Well, no wonder we can't get into this"

So, they went to the drill, but still had a hard time getting exactly all that was needed.  Hopefully enough to get us started and the next time we're gonna do it under sedation.  I'm using this opportunity to not complain about how painful it was and how sore it has left me, but to instead highlight how HEALTHY and FIT and STRONG MY BONES are.  Are you listening, AML?  And I'm glad to have it done because....

4. Two great conversations with Dr. Bhava today are only continuing to confirm what a great oncologist she will be for me.   We got the bone marrow biopsy done but will still be a bit before we get all that data, but we still have A PLAN and CHEMO STARTS TOMORROW!  So I'll do a 28-34 day in-patient cycle where we'll be doing two IV drugs: daumorubicin (once a day for three days), cytonabine (continuous for 7 days) and then a third experimental trial oral chemo (selinexor). This is already FDA approved for use in other cancers and is showing high efficacy with AML in these trials and because I'm so young, strong, fit and healthy (keep hearing that; doesn't hurt my feelings), I qualify to add it to the standard care procedure in the first two.  Let's raise those remission prognosis stats!

4. I have heard and reconnected with SO MANY folks today.  Boy, send out the bat-signal and you people SHOW UP!  It was not quiet around here today so I haven't read every one, but I will.  And even when I can't respond to each, know how meaningful it is to Robert and to me to be encouraged by you and surrounded by you. 

5. COVID is improving daily.  Still a nagging cough, but my strength and energy is much better so I'm ready to move toward the next phase of treatment.

A complaint:  This blogger interface is old and dated and I am also old and dated (when it comes to technology; NOT old and dated when it comes to leukemia thank-you-very-much).  So I spent some time trying to figure out how to update the subscription feeds and I just can't figure it out.  I've got to learn a lot about oncology right now, my IT certification will have to come later.  If anyone has a quick and easy solution you want to throw my way, let me know.  But all our other family history lives here and I'm not interested in changing to a different platform.  In the meantime you just might have to bookmark thehardylife.com and check back in the evenings to see if I've bragged any more about how healthy and fit I am?

First and foremost (VOLUME UP), I think we got a new theme song.  Start learning your choreography, Team.

What a LOVELY gift basket from my KBC people!!!!  So many great snacks and fruits and it will be immensely enjoyed from my highly contained hospital prison cell room.

Snuggles, cuddles, balloons smiles and watching our show, Alexa and Katie on Netflix - go check it out.

Let's GO Chemo Day 1 tomorrow!!!  We are ready to do this!

Clara's First Blog Post

It's been over a year since I've posted anything which almost always means that we're doing well and that life is simply full and busy.  It's both, but also very joyous.  

When I first started writing regularly in the blog, after Clara was born, I used to imagine a day when she (and any other future children) might be able to be contributors.  It may be awhile before Clara is typing her own essays, and who knows, maybe she won't ever have any interest.  But I thought it would be sweet to share these pages from her summer journal after we returned from a long weekend in Charleston.  

The literacy teacher in me is delighting in watching my own child develop as a reader and writer.  These are precious moments that I've watched in other people's children countless times.  Getting to see the baby I've read hours to in my lap and the child who was - it seems like yesterday - just scribbling with a crayon on paper now writing complete stories is a new kind of magic.  

So, here's Clara's first blog post, along with a handful of photos from our time in the lowcountry last weekend.  

(Last weekend we went to Charleston to visit Rick and Charlotte and JJ.  I liked catching blue crabs, swimming in the pool, going to the aquarium and kayaking with Daddy.) 

If these pictures seem familiar to you, check out our trip to this same place three years ago, when Clara was the age that Eloise is now.

Cousin #5 - Lila Belle

Clara has some friends at church and school, but other than Chloe the little people she really loves the most are her cousins.  I was never close to my cousins growing up, but it's so fun for me to watch how my girls have girl cousins so close to their age on both sides and the bonds that they are forming.  My brother, Trey and his wife, Jennifer were expecting their third child in April and since they don't find out the gender until the baby is born, I was so excited to get the call and find out that it was their third girl.  Girls, girls, girls everywhere.  Introducing Lila Belle Davis, Davis grandgirl #5 and Clara and Eloise's fifth girl cousin (all under five years old).  Sweet blessings.

Here's our first time meeting her.  Clara loves loves loves her some babies and since Eloise was getting big and wiggly by this point, she was pretty excited to get her hands on a newborn.