Sore neglect - Feb. 1

The word on the street is that I have let the picture gallery here go to sore neglect since the beginning of the new year.  My eldest son's roommate, Dennis, pointed out today that when Warren Harding was running for president after World War I, that his campaign slogan was, "Return to Normalcy."  I didn't know there was a history behind that phrase. Returning to normal has just been a slow reality for us and as the wheels pick up and spin faster and faster along that track, I think I have fallen further and further behind in updates.  I'm not sure whether to apologize or to celebrate that or both.

So, here are several moments in the somewhat normal, whatever that means, life of Asa, the wild and wooly toddler man with even wilder hair.  

Yes sir, we have a climber.

This was selfless taken while eating goldfish.  Food is now fun!  The favorite - Tilamook yogurt.  Don't try to feed him another brand.

This picture means a lot because we spent so much of last in the land of low counts, neutropenia.  Playing in the dirt outside was not a reality.  Asa now begs to go outside every single day.  And we gladly accommodate.  Yay!

Yes, a horrid, grainy pic, but this is the crazy hair with the sun behind it.  We absolutely cannot figure out what it is, whether it's truly blonde or headed toward curly, but for now, a good portion of it sticks straight up, even though it's long enough to lay flat.

All done now! - Jan. 4

I caught it!  The shot we'd been talking about!  (see http://graceinspades.blogspot.com/2014/12/an-end-end-dec-18.html)  Asa signing "all done."  Of course, he was eating Sunday lunch, but still, ALL DONE!

A Carol for Asa - Dec. 27, because we are not video tech savvy enough and too busy eating turkey and repairing the cooktop (yes, it flaked out, too) to get it uploaded on Christmas

An end. The end. - Dec. 18

Sometimes you just don’t know what to say.  I think we’ve spent so much time wondering when there will really be an end, that the end just seems so very…quiet, quiet in the middle of busy. 

Today we went for our last visit of 2014 to the TCH oncology department.  It was a long wait as clinic normally is, and as we sat and visited with others deep in the battle, still looking for answers, it seemed sort of surreal.  For us it was a minor affair, just bloodwork and a simple visit with Asa’s oncologists.  And good results.  All the loose ends, the things that seem to still be flying loose at the edge of our vision, were tied up tightly, snipped clean and called done. 

Long day done at Texas Children’s with a little more excitement than we wanted - Dec. 8

The title should technically say long day finished, but, honestly, by the time we left the med center this afternoon, we were starving and done, just soooo done.  After the 4am wake-up call and out the door before 5, it was in some way good to be first in line at the MRI department, though it still baffles me always why if you arrive at 6, it takes them until 7:30 to start the procedure and that is good time. And today the MRI took a fair hour and a half, leaving us with about 3 hours of bad waiting room morning talk show entertainment and yet more entertaining toddler fit-throwing accompanied by sketchy parenting.  We were grateful Asa did well today as he is still slightly congested from the household flu epidemic, though the anesthesiologist didn’t think he sounded poorly at all.  If he didn’t sound badly before the MRI, he does now.  He’s croaking like a barking frog between flu residuals and the breathing tube they used in the MRI.  Perhaps that will be better in the morning.

Off to the med center and more toddler fun! - December 7

It’s that time again.  Off to the med center day tomorrow for what we are praying is our final MRI trip.   We would ask for your prayers, as our entire household has been deeply under the weather with the flu this past week and we are just now barely on the mend enough to get through this type of excursion.  We are grateful that Asa is first on the docket in the morning, which unfortunately means we have to get up long before dawn, but thankfully means that we are not sitting waiting all day long with a ravenous toddler, just stuck in a waiting area with a sleepy one.  We also have an eye appointment after our MRI to look at Asa’s eye that does not drain properly as a result of the anti-viral given to him in such high doses when he was critically ill with adenovirus.  Tomorrow’s MRI will be followed up by a doctor visit later in the month. 

Thanksgiving in small possible steps - Nov 27

Thanksgiving shouldn’t be an I don’t want to crawl out of bed day, not that I haven’t felt that way about parting the covers just to shove a cold turkey in a warm oven.  But we think it shouldn’t be that way, that thanks should pour forth regardless.

Today I got to listen to my husband battle to be a family leader, grasp for words that are just…hard.  You know God is good and gracious and we hold hands in prayer in privilege, but we were all standing in that circle figuring out how to put words, out-loud words, to the thanks, that gut-wrenching, poured out thanks, thanks that really are just groanings.  The words were hard and fumbled.  Three down, two delivered and standing.  What do you say? How do you act? You want to be like Job and choke out the “and yet will I trust you” words, but how do you shovel sweet potatoes when there’s no spouse, much less offer thanks? 

Squealing with Excitement! - November 23

This is us.  Actually this is a very normal Asa activity, squealing in the floor, but today we are squealing with excitement for our friends, the Shaws.  If you haven’t read their story, the story of the little Gable from China, you are missing out on one of those extravagantly big God stories.  (Here’s the link if you missed it. http://graceinspades.blogspot.com/2014/11/on-behalf-of-orphan-orphan-sunday-2014.html ) Only God creates such beauty on the back of the tapestry and flips it around to show off his goodness to us.  I am still in awe at the sheer one in a million coincidence of it all (actually the odds would be much crazier than that, but I’m not mathematician), the linking of two little boys across the globe with not only the same cancer, but the same totally out of the ordinary treatment.  But that’s not why I’m posting tonight, but then again, it is. 

Repeated melodies and important smudges - Nov. 13

I giggled to myself yesterday.  It is just like God to close a circle with comical but quiet certainty, leaving his smudgy fingerprints all over an affair.  Yesterday Asa had his port a cath removed (see prior post).  It was pretty uneventful in every way, not that a toddler and anesthesia are ever a cakewalk, but we didn’t have any extraneous hospital blips like insufferably long waits for strange and unknown reason, no hunger cries or cookie tossing, just too much coffee and an overactive toddler running tripping up doctors with push toys.  Into that normalcy came a sweet realization. 

It's a marker day tomorrow - Nov. 11

It’s a marker day tomorrow.   I remember sitting with Asa on Feb. 11, Allen’s birthday, trying to celebrate and choke down cake when I had just heard the word “oncology” used in a sentence regarding my flesh and blood.  It’s odd.  Allen turned 15.  Fifteen years ago to that birthday date, a friend gave birth to another little boy within hours of Allen and about a year later, their son was diagnosed with a brain tumor.  And there we were, running full circle in their shoes, wrestling with the words no parent ever wants to hear.

They learn young - Nov. 4

On behalf of the orphan - Orphan Sunday 2014 - Nov. 2

If you know me, you know I love stories.  In college, I won a pair of tickets to see “Into the Woods” traveling-Broadway, probably the best and most expensive seats I’ve every occupied.  “Into the Woods” is just a menagerie combination of all the fairy-tales in the first act, Disney-perfect, the fairytale coming true.  The second act it all goes dark and everything that could go awry in the darkest way imaginable does.  For this Technicolor girl, it was a highly disturbing experience and I have never ever had any desire to see that musical again.  I’m sure I could drag something allegorical out of it, but I don’t want to.  I just want to know good ultimately wins, and even if the Big Bad Wolf goes psycho, that there is a victor and I don’t want anybody messing with my mind in regards to that truth, especially on a stage.  Not a fan of happily ever after either, but I want to trace the storyline looking forward and in retrospect and know beyond a doubt who wins.

I haven’t mentioned it here, but a funny little blip came across my radar two months ago.  At that point, we were truly just holding our nose above the drowning waters, knowing we were past the big waves. I got a random message from someone I know very loosely.  She knew Asa had liver cancer and asked if I would be willing to offer counsel to a family who was considering adoption of a child with liver cancer.  Easy answer.  But, of course.  And I sat back and began to watch God show off.

Med center visit update - Oct 31

I truly have not intended to let it all go to neglect, but life the past few days just snowballed and I am finally getting to update.  Thank you for covering our backs in prayer and checking in with us even when I don’t have it together, not that I really ever do, just might occasionally look like I do.

We ventured back into the med center yesterday.  I suppose I could call it uneventful, but it’s always just crazy stressful between traffic and the infernal wait.  I could just count my blessings that we weren’t in the line of folk that were sitting in the transfusion room waiting on chemo or blood that was running hours behind.  We were privileged.  We could be prodded for blood, see the doctors and leave.

Overall, Asa is good and we are on a forward moving path.  The results of his AFP, cancer blood marker, were up a tiny bit yesterday from 10 to 15, but not a concerning jump.  As his liver grows and things adjust, this is very possible.  He weighed in at a whopping 25 ½ pounds and for those of you who have been along for the entire long ride, you know this is a huge move toward full return to normalcy.  It was a very sweet thing to see the doctors so genuinely thrilled and grinning ear to ear at Asa’s progress.  My heart often hurts for them, as I know they are so often the bearers of bad news.  I know the names and faces and parents of so many who’ve not won the race in the here and now.  I can’t imagine being their doc week in and out.  Dr. Heczey was telling us how he was using Asa’s case this week to encourage another mother that kids to come the other side of the really hard stuff.  I wish I could give her a hug.  I’m sure victory tastes sweet for not only us.

Fruit Salad! Yummy! Yummy! - October 28

Hair, Selfies, and Prayer - October 21

Andy came home last weekend from college and took one look at Asa and asked in passing, “Who gave him a buzz cut?”  At first I was very confused and had no idea what he was talking about.  “Buzz cut?”  And then, face palm, it dawned on me.  Andy hasn’t been here to see the daily miracle transition from bald to beautiful, so at first glance, he was thinking haircut, not hair growth. 

So, here is a few pic of the miracle hair growth.  We are still a bit unclear as to the color.  My personal guess is that it is a color in the range of my strawberry kids, a bit lighter than Asa’s original more auburn headful, but whether it’s a lighter blonde or brown version of either of those two choices depends upon the day and light or what color shirt he’s wearing.  Time will tell.

For those of you over 40, this is Asa's

"what you talking' about, Willis?" look.

Sticking points - October 10, 2014

Yesterday I really wrestled with what was important.  Today, too.  Every day is a juggling game.  It’s always a juggling game in this house.  How early to rise, do I dare a moment in quiet before the earth shatters downstairs or someone forgets to sort laundry or take out the dog?  What do I expose my kids to?  Do we wrestle with headlines or do we just stay put and wrestle with one another?  How do we sort all the sticky junk that just seems to ooze under the door and seep into our lives, even if we try to stay in bed, hide under the covers, shut it out.

Battle complete. Well done. - October 7, 2014

Many of you who have been along for Asa’s big, long journey, know that there are a lot of sweet people, docs, nurses, volunteers, patients, and families that we have gotten to know along the way.  You just can’t help it.   We are very sad to report that our precious friend, sweet saint, Caroline, the one that we probably reported on most, requested prayer for most, lost her battle with leukemia yesterday.  We celebrate in ways as she is free, free from the pain and torturous treatments, the ups and downs of chemo and pits of side-effects, finished forever with the days of trying to survive being a teen and living like a bubble kid, day after day of needing transfusions.  We celebrate that she was born again and is with her Savior, the Lord Jesus Christ and enjoying every minute of a new and perfect body and all the freedom and joy in His presence.  How exciting!  We sorrow with her family who loved and encouraged her (and us!) so and fought so hard.  Caroline’s presence influenced so deeply all of those who met her.  She was a funny and delightful kid who just gleamed a holy content whenever you saw her, pain or not. 

Back in Hair - Oct 3, 2014

We’re back in hair around here again.  It’s part of recovery mode, the return to whatever normal might be for one’s pate. Unless you are blessed with the male pattern baldness gene, I’m not sure most of us think so much about hair or the lack thereof, until cancer, and then hair is a hot commodity. 

Redemption now? Redemption later? - Oct. 1, 2014

My box has been filled to overflowing.  I like it.  I like the warm fuzzies.  Fat babies, soft newborn skin new on mommy’s chest.  Long awaited.  Prayed for. Surprised with.  Joyed over.  And the pics of grandbabies, apologies for the obnoxiousness of dumped whole albums on social media for the world to see, but none of us perceive joy as obnoxious.  We just lament that we are not there to squeeze the warm flesh ourselves, share a bit in a grandparent’s pride.

But there’s other stuff there, hiding in my feed, lingering in my email.  A different joy.  I’ve shared some of their names in the past, but I can’t capture them with a lens like I can Asa.  Sometimes hospital protocol, privacy acts are so restrictive that you and I can’t even venture into their world unless they venture out.  But they followed us home.  Not to be insulting, but it’s sort of like a friendly mutt with mange that loves so unconditionally, that you attach to with a first love such that you can’t forget them, leave them out of your story.  So you make more space.  You think you don’t have more space because you’ve already lived and written three lifetimes of chapters of your own saga, but you do, you shove over and make room for more.

A giggly day! - Sept 27, 2014