To clinic. Forever. And ever. And ever. - July 24, 2014

Falling in bed and done, so done today.  It was entertaining today, not quite so much as the day the sunroof got stuck open, but entertaining.  Should have known it when it broke into a total drenching, bucket-emptying downpour as we were walking out the front door. We started wet in spite of umbrellas and raincoats. Then we got to clinic and saw our docs and the day moved to the speed of molasses thereafter.  If this was paid healthcare, government-directed is unfathomable.  We waited four hours I think for them to drag someone off the street and squeeze them drop by drop to get blood.  I shouldn't be so sacrilegious about blood graciously donated, I'm sure, but sometimes it's very baffling why we wait so long.  Then it took about 3 hours for the transfusion itself. We were in clinic for 8 full hours today, most of which was spent tortured in front of a tv tuned to the nick channel.  So overjoyed to come home and fall in bed, but Asa is totally wired and full of lots of blood and won't go to sleep.

We also got chemo today, but that was a minor affair comparatively.  Asa's platelets are a bit low and we would like prayer for that.  They didn't give him any, but we are trying to keep a toddler from constantly falling and it's a challenge and he bruises easily.  His other blood counts are very low right now, too, so we are on tight lockdown, which is no fun.  We were hoping they were headed up, but not so yet.  Hopefully they will be up enough for inpatient chemo next week, our final inpatient chemo. Please pray for Asa's hearing, too.  We have one more round of the culprit chemo next week before hearing tests again.  They have arranged for a more thorough testing of what's really going on.  Asa is talking a bit, so we know he's hearing for now, grasping a few new words, but upper ranges go first.

Thanks today for finally escaping the nut house, for kind people who entertain kids at TCH, so their parents retain sanity. Thankful for good docs and nurses who know our kid.  I don't know how they do what they do day in day out.  Happy that Asa is content with goldfish and cups of ice.

Out and about and off to clinic - July 23, 2014

Out and about with Asa.  We are supposed to be locked down, but made a clandestine trip to the orthodontist and snagged bread at the grocery store.  And then Asa just played the rest of the day.  He's getting very brave and getting into everything and was the last person seen with the espresso steam pitcher yesterday in the kitchen, an item that is now mysteriously missing. 😣 We find ourselves rubbing his head much of the day because you just can't help it.  It's like rubbing a soft, fuzzy peach or like teasing a kid and running your hair over the top of his buzz cut.  But, in this case, you enjoy it so much because Asa has just been so very bald.

Tomorrow is clinic and outpatient chemo day.  Please pray for calm and uneventful.  It's likely to be a long day as Asa typically gets blood this week before inpatient chemo and we have an additional follow up appointment with another child regarding an old issue.  Pray for travel safeties in crazy Houston and the crowd at home holding down the fort, trying not to go stir crazy.  Other friends are on mend, but would appreciate prayers.  Please pray we stay well as well.  Some of us still have allergies and coughs.

Thanks today for God's provision in our crazy summer/cancer schedule.  It's the little stuff, little time savers that make this not so awful. Thanks for milkshakes and lemon slush with kids and cooking with girlies, sofa time with hubby.  And slobber kisses, fake laughing, and fuzzy heads.

Barrel o' Monkeys - July 22, 2014

Barrel of monkeys today. Lots of juggling, chasing Asa, managing troops, feeding Asa, making phone calls, telling Asa no, paperwork, playing with Asa.  Busy, busy toddler.  You'd not know he was a chemo kid except for the port and the obnoxiously large scar.

Please be in prayer that we stay well and don't go batty locked inside.  Asa can't be out in the sun with chemo and at dusk after all the rain, it's the invasion of mosquito that no amount of deet or citronella could deter.  We want to go out, but we just can't.  Please pray for our friend, Caroline, who's been feeling puny.  

Thanks today for watermelon, good coffee, and leftover pie. We sound so Southern.  Glad for friends, jobs, opportunity, and siblings to play games with.

Remaining treatment plan run down - July 21, 2014

I've been asked several questions of late about where we are in Asa's treatment plan.  I'll attempt to outline that here.  Please understand that we are always reluctant to do so because a common cold can throw this way off, but, yes, we are hopefully and prayerfully on home stretch, Lord willing.

Asa's treatment started late February originally consisted of 6 rounds of chemo.  Each round lasted 3 weeks, starting with an inpatient chemo, followed by 2 weeks of outpatient clinic chemo.  Somewhere in the middle was supposed to be the tumor resection.  And, as you all know, that didn't happen. Our counting of weeks got thrown way off and there was something snuck in there that we call chemo 2A.  Ever since then, it's been confusing.

So, we are just counting what's left.

🔆This Thursday, July 24 - clinic chemo

🔆Next Thursday, July 31 - inpatient chemo

🔆August 7 - clinic chemo

🔆August 14 - clinic chemo - last chemo

It sounds over then, but it's really not.   I'm not sure cancer is ever really over.  That's not pessimism as much as the reality that it is a never ending bunch of follow up appointments.  Years of them.  These last chemos are followed by bloodwork check ups, hearing tests (August 20), MRI and CT scans to make sure nothing else hiding, EKG to check for heart damage.  And if things look good toward end of year, Asa's port will be removed.  It sounds daunting, but the expectation is that all cancer is gone with tumor and these last chemos will knock out any guys playing hide and seek.  Asa's protein markers are good and dropping.  Those need to stay very low and not climb again ever.  

That's probably plenty to pray about.  I'm sure we would love prayer that germs not complicate matters.  It's still chemo, even if we seem to be on the mend.  Please pray that Asa's hearing loss not progress to significant.  And pray for us as we are truly tired of the med center, not that anyone ever likes that place.  We are grateful to not still be residing there 24/7.  Pray for our lockdown family, that we don't head too quickly to the funny farm.

Thanks today for big fat baby slobber kisses.  I know no germs, but you can't resist a kissing baby!  We enjoyed strawberry pie and pulverized cantaloupe and consumed a bit more bottle today.  Grateful that chemo tastebuds are improving.  Wishing Asa could be out in sun.  It's a chemo no-no, but so enjoyed others on kiddie pool today.  Summer's little joys

Legoland at home with the sibs - July 20, 2014

Yes, we start them young on Legos.  Asa played and played today and only stopped for naps.  Not sure how that's going to work during school year as he keeps all of us very busy and he's standing more and more independently, next stop running, not walking.  He's well versed at saying "no, no, no," and is venturing into more sounds and names.  We are thankful his hearing seems to be okay to hit these normal milestones.  As you can see, he is still highly bald, but he does have some peach fuzz. I keep thinking it will show up in pictures, but it doesn't.  I thought it was blonde, but don't think so now as whatever the color is starting to cast a slight shadow in his head. We are curious to see, like with a new baby, as chemo is known to change hair both in color and texture.  

Please do be in prayer.  Asa's counts are very low right now through probably the next week and a few of us are still coughing and sneezing.  Nothing major, but we need no germies at all.  Asa's been a bit sniffly, but suspect it has mostly to do with loving cats. Please be in prayer that Asa's hearing stay intact.  It is really a waiting game over the next month before they check it again.  We can really only simply pray for it to heal and not progress.  I know these are little things that are so minor compared to a huge liver cancer tumor, but we are left dealing with the trade-off after effects.  Please continue to pray for others with low count issues, friend, Caroline, who's feeling pretty rotten again and Andrew, who is a bit better and appreciated your prayers.  These kids are older and their lives are so affected by immune issues.

Thanks today for dogs that bark and cats to make Asa sneeze.  Grateful for Sunday, even though some of us were locked down and couldn't go to church.  It's the one day of the week all 13 of us are typically home.  Thankful today for pears and pie and little kitchen happy hands who bake well when Mom is busy.  Others grateful for big cooks who can rock the Mexican food.  And chicken eggs.  Nice brown hens that make Asa laugh and brown eggs.

Home stuff - July 19, 2014

Asa had another fun day at home.  Oh the joy of lockdown!  Asa plays, gets toted about, is silly, eats lots of goldfish, just toddler stuff.  Mommy and a few others went Walmarting and came home and decontaminated themselves. Exciting life, but keeping it boring is ok.

Please pray that we stay well and rest well.  It seems there's always plenty to do to catch up.  We caught up on medical bills.  Still would love to see how much a liver resection surgery costs.  It's just fascinating in some odd way.  Please pray that we endure these final weeks well both physically and otherwise.  We get tired easily and the kids get cabin fever even faster.  Thankful for jobs to keep olders busy. Our friend, Caroline, is improved.  Still pray for Andrew.  It is hard when your immunity is not normal.  Hard to be normal. Hard to keep spirits up.

Thanks today for God's faithful and humorous provision.  Never a dull moment here.  Grateful for jobs and that there are many of us to hold the fort down.  Thankful for dancing and giggles and the repeating of the word "no" as a sing-song mantra.  Grateful for fun baths to relax.

Happy Chemo Recovery Day! - July 18, 2014

Asa was tired and a little grumpy today after chemo yesterday, but he had a fun day hanging with the sibs, shoveling goodies, tackling his brothers.  Some of us ventured out to take care of household affairs, but Asa stayed home so that he wouldn't be exposed to germies.  😷

Please be in prayer that we do stay germ free.  Asa seems fine unless he rolls all over the cats, but a few of us are still beating the last of the cold lingerings.  We are washing hands and doorknobs and being antisocial to stay well during these last few weeks of chemo.  It's sort of a bummer at this stage so pray we endure happily. Please be in prayer for friends, Andrew and Caroline, who are suffering with low counts like Asa, but struggling with infections.  They have it rough right now.

Thanks for fun day of giggles and play, in spite of chemo's lingering aches and pains.  Happy to see good eating, some drinking, which is often poor day after clinic.  Thanks for kids and Dad holding fort down, for crockpots, and God's easy provision of what we needed so shopping was not a huge hassle.  Thankful for living somewhere where people know your name and long time friends and hugs abundant.  We are blessed!