Friday, September 26, 2014

It's official! Normal! Yahweh heals! - Sept 26, 2014

It's official.  We heard from the docs and Asa's AFP, alpha feta protein numbers are 10.8.  That's 10.8, down from 20 a month ago, down from over 51,000 in February.  12 and under is within normal.  Praising God for normal!  A friend of mine has a nice little writing about the absurdity of our labels of normal, because in terms of our humanity, I'm not sure what we are measuring against.  But for today, philosophy aside, for medical reasons, normal is fantastic, because normal reiterates what the docs said a few weeks ago, that they can safely call Asa "disease-free."  So, after 226 of the longest days of our lives, 6 chemos, one specialized chemo embolization, a liver resection, 3 yet longer weeks in ICU, and a number I lost count of long ago well in excess of 80 days in hospital, we are free and clear!  Truly a death to life miracle!  God has been incredibly gracious!

Thursday, September 25, 2014

Back from clinic. Don't know anything yet. - Sept. 25, 2014

Grateful to report an uneventful day at clinic today.  Good reports thus far.  Asa is fat and healthy and docs were pleased with him.  After months and months, we finally heard our genetic reports on both the tumor and bloodwork.  Basically, in very short summary, we have zero known genetic reason why Asa developed hepatoblastoma. It still remains a mystery. The nurses took bloodwork.  We do not have results yet from Dr. Kevin.  We will post when we hear word from them.  It appears that as long as the numbers are decent that the plan is to take the port out soon.

As much as we hate waiting, was grateful for time in waiting room today seeing friends and meeting new ones.  All parents hate clinic in ways, but in ways, it is a warm place where you get to know lots of people and commiserate in a way that only a cancer parent can, the joy of bearing one another's burdens.  Thankful for an easy trip and the hubby who graciously drives.  Glad that we were not there all day long, either.

Wednesday, September 24, 2014

To clinic. To clinic. Tomorrow. Again. - Sept 24, 2014

Tomorrow is clinic day again, bright and early at TCH.  Asa has been doing well, literally giving us a run for the money.  He's up off all fours, breaking loose for the kitchen cabinets or the dog's water, the stairs, or anything else that is a no-no.  I tried to capture a pic of his headful of peach fuzz to no avail.  Could not get the camera to focus on the teeny hairs.  He has mixed colored eyelashes, some of which fell out and are coming back, and some of which held on for dear life.  The rest of us are surviving, trying to do the normal school year routine after months of non-normalcy, digging out of piles, physical, mental, emotional, that went to the wayside and got way to deep.  

If you didn't get a chance to read the update from a few weeks ago, the collaborative report from surgeons and oncology docs, go back a few listings and take a look.  Our current status is simply watchful, as I think they anticipated it would be for the next year.  Tomorrow they will do bloodwork and look primarily at Asa's AFP, alpha feta protein, levels, the blood marker for this cancer.  The last count about a month ago was 20.  This was up from the last count of 13, which was one point above normal.  The desire is obviously for it to be steadily dropping.  The hope is that tomorrow that it would be down again and at worst, the same.  The plan is for another MRI as well before the end of the year.  We are praying that hopefully Asa's port with come out as well before the end of the year.

We would obviously ask that you be in prayer for the same old things, that Asa continue to improve and that we could be at home, well away from the crazy world we lived in for so long.  Pray for us as we drive in and back tomorrow, that it be uneventful.  Pray for wisdom for the docs as we go through bloodwork, results and such.  I'm not sure when we will have a definitive answer on the counts.  Last time it was a day or two.  I'm sure the docs will be pleased with Asa's weight, as he has been packing on the pounds, making up for lost time.  Pray for us as we go back into the world of clinic, that God would use us to talk to and work with families there.  Pray for our crowd that will stay home tomorrow.  We've been having car issues, so we are short a car, so there's a bit more carpooling going on than normal.  College, work for 4 different folks at 4 different places, and clinic, all make for a dicey day.

Thanks today and this week for a bit of time to get this blog stuff up and running, a solution that we had been talking about, but not had time to implement.  Grateful that Asa is eating well, appears to be on yet another growth spurt.  Thankful to have my van back and glad we finally bit the bullet and bought another vehicle a few months ago.  Happy to have been home for a month, sleeping in our own beds, eating our own food, a nice month, away from life at clinic and TCH.  I love and appreciate those docs, but sure not heartbroken that we haven't had to see them. Thankful for kids who help out around here so much and cover my tail so I can recover.


We've moved! - Sept 24, 2014

We've moved.  Asa hasn't, but all his info has.  After months of trying to manage between Facebook and CaringBridge and neither really working the way we liked or offering a long term solution, we moved the story of God's faithfulness to Asa over to a blog.  Still not totally sold on the format, still not totally finished polishing all the uploaded data from the past, but it's here, all 167 posts, probably with a few missing that vanished early on from Facebook.

This blog format also allows for comments and feedback and feeds, etc.

Comments and feedback always welcome.


Words we've been waiting for - Sept 11, 2014

9/11. What a strange day, yet a wonderful day to mark goodnews, tell the faithfulness of God.  We received a cheery call from the oncology fellow this afternoon telling all thedetails of the monthly team meeting. Reviewing the MRI from a few weeks back, Asa’s surgeons were able tobetter explain to the full team what they felt was going on.  The remaining odd tissue in the surgical bedis not close to the tumor removal area. The tissue is along the side where Asa’s gall bladder was removed as apart of the process of accessing the liver. They feel the tissue is just fibrous tissue.  Nor is there is any real concern from anyoneon the team for the remaining miniscule blip on the lungs.  And, all in all, with these results, no onethe team is particularly alarmed at the escalated AFP cancer proteinmarkers.  It’s still low, not as low asthey’d like, but overall good.  The teamfelt very comfortable declaring Asa “disease-free” at this point.  We are praising God for these welcome wordsbecause for us, they translate into normalcy, normal toddlerhood, less crazytrips to the med center that own our life. 

Asa is doing well. He’s still bald as ever, though we are noticing the tiny beginnings offuzz shadowing his head.  And withtoday’s proclamation,  we have somereassurance that we are not moving toward permanent toddler pattern baldness. Asais running the house on his feet, eating everything in sight and asking to getin the high chair to eat.  He verballygives us what for and no longer wants to be pinned in a grocery cart or dothings your way.  This is difficult,because he has put on plenty of weight, filling out nicely.  He has discovered shoes and likes them andhas successfully lost one shoe from two different pairs.  He loves bath time and has zero fear ofwater.  The nursery has been a lose-loseproposition mostly thus far, though he did better at coop classes thisweek.  He is entirely spoiled by beingsurrounded by people and enjoying every minute being free of the life oflock-down and chemo non-appetite. 

We want to thank you again for all your prayers through thisjourney.  We are still trying to figureout what God would have us do with it all. We have thus far been called for medical advice from a family adopting achild in Asa’s shoes, but past that, not sure where you go with it.  So, with this sort of great report, what canyou pray for?  Asa still has a year toreally get fully out of the woods, even with a good report.  We go back the end of the month for bloodworkand doc visits.  Surgeons asked foranother MRI 3 months out to compare to the one last done.  This is out of normal protocol.  We’re not being given word on when the portwill come out.  I suspect it will beafter that MRI.  We still have minorhearing issues looming, though Asa is picking up new sounds regularly now andcatching up.  We can’t return his upperhearing loss, but if he is functional, it is a good thing. 

I know it was mentioned before, but if you are available andable, there as a blood drive on Sunday afternoon, September 21st, atMagnolia Bible Church.  If you would liketo give to the Gulf Coast Regional Blood Center which benefits Texas Children’sHospital, you may sign up online at giveblood dot org for a slot that day. Theblood center also has local offices all over town where you can give as a partof this campaign drive at any time. Locations are online at same web address.  If you do so, please give the center the codeM801 to credit it to Asa’s drive.  Thisis so very important.  There are so manykids, especially in oncology and hematology, like our friend, Caroline, whohave such a desperate need for blood. Thank you for considering.

Today we are clearly very thankful for the fabulous reportand clarifications of Asa’s surgical team. We are grateful that we have the privilege of such outstanding medicalcare and good insurance to boot.  We areforever grateful for those who have generously contributed to Asa’s medicalneeds such that we could concentrate on caring for him instead of piles of billsand long term debt.  We are insteadgratefully indebted to you for your prayers through which God has somiraculously worked. Happy today to be home with kids without lots ofburdens.  Thrilled to be able to catchglimpses of God beginning to work beyond this portion of our story.  Okay with normal for a bit.  

As it appears we are in process of closing out this chapterof this journey, I am in process of moving all this data and future data off ofthis format to its own location.  Rightnow Asa’s story is listed on Facebook under my personal page and on CaringBridge.  I will be sending out noticesoon as to where you can find future info.

Update!! - Sept 7

Asa update.   While Asa has been running circles around us, eating everything in sight, getting scolded for trying to put his hand in the VCR, general toddler stuff, taking full advantage of his bald cuteness, we have not learned much more on the medical front.  The lead oncologists are taking a wait and see approach.  The liver team meets 9/11 where there will be a full discussion of Asa's case, but for now, we wait.  We return to clinic at the end of the month, unless decided otherwise, when they will again run blood work and see where things stand. 

The unknown - August 29, 2014

I guess we aren't done with these posts.  We got a follow up call from the oncology fellow today with Asa's alpha-fetoprotein counts.  This is that marker that escalates hand and hand as liver cancer cells grow.  Six months ago it was over 51K, a month ago, it was 13 (one point above normal), and after this last chemo, it has risen again to 20.  What this means, we really don't have any idea, but the number should not rise, but we don't know how much fluctuation is allowed. If you missed the odd results of the MRI and CT scan, see yesterday's post.  We have simply been told that Asa's entire team, oncology, surgery, etc, will sit down next week in their beginning of the month meeting and talk about this.  It does mean Asa's port stays for a while, even if those numbers mean just wait and watch.  We really can't speculate well at this point.  It could just be fluctuation.  It could be call for testing or another round of chemo.  We just don't know.  In the meantime, Asa is running around like a wild and obnoxious toddler, reeking havoc, unrolling toilet paper, giving kisses, eating at least some with a preference for Popsicles, chocolate, and goldfish.

So what to pray for in all this?  I think we would all like to see a clear medical direction and obviously complete healing. Frankly, we are very tired and all the lingering unknown is further exhausting.  We thought we were getting off the merry-go-round only to find out we're strapped to the seat.  We are clearly disappointed, not as worried about Asa as to our knowledge, he is still not in the land of poor prognosis.  The frustration, apart from the sheer thought of spending more time in the med center nut house, is the thought of a sick kid with chemo, more lockdown time, things like real threat of further hearing loss.  We would appreciate prayer for peace in the lingering storm as we process reality and emotions.

Thanks today for my helpers.  Glad for happy, funny toddler who entertains us all.  I don't know if bald is just cute or if Asa's just learned how to be a ham and more of a normal little boy.   Grateful for cooler day, time to get more organized, at least a little bit. Thankful for a supportive hubby in all this crazy.

Clinic updates - August 28, 2014

Follow up at clinic today for Asa.  I wish we had all the info, but we will share and explain what we know. MRI and CT scans look good.  There are a few oddball items.  First, there has been a less than pinhead size unidentifiable blip on Asa's lung since the first beginning scan.  The call it an "artifact," basically  an unknown.  The blip has shrunk and no one has any idea what it is and the agreement is that it is likely not metastatic disease, but no one really knows and it's way too microscopic to biopsy.  Second oddball item is some difference in tissue along the suture site in the liver.  No one really thinks it's anything other than an oddity.  The bottom line is that none of this matters as long as Asa's blood protein markers are good.  Those will go up if there is any active disease.  Blood work was done today, but the doc still hasn't called us with the info or posted it yet.  As stated before, before last chemo, this number was 13, down from 51K+, now only one point above normal.  Other news was EKG was fine and hearing as we learned last week, was the same.  

So, how can you pray? Do pray that all these little things amount to nothing.  The first year is the most common for finding little recurrences that require another shot of chemo.  Second year is much less likely.  In Asa's case, where there was a full resection and no metastasis, those odds are are pretty low.  We do not have to return to clinic for a month.  As long as the blood markers are clear, Asa's port could come out before then.  Pray that we can begin to enjoy normalcy some, a life where all this doesn't own us.

Thanks today for a pleasant visit to med center, if that's possible.  Glad to visit with other patients and see some key docs, visit friends on oncology unit.  And happy our friend, Caroline, wasn't there and is now at home.  Thanks for my dinner cook and shopping helpers and the boys are thankful for Aggies and I got to hear all about it!  Very thankful to hear cousin/brother in law Mark had a clear PET scan and is cancer free!!! Asa was grateful for soda and straws.

No more testing!! - August 26, 2014

Back to the med center again today for MRI and CT scan.  I feel like sometimes Asa's story for the day sounds like a scratched and broken record that goes something like, "We went. We did what we needed to.  Asa survived. We came home." And the victory is in the getting it over with and coming home.  Today was that way.  Again.  We took a famished toddler to the med center, waited around until he was beside himself, wrapped him up like a burrito and shoved him screaming in a tube for a glorified xray, took him out, waited until he cried himself to sleep, put him under and crammed him in a thumping tube, woke him up, fed him, listened to him burp, put him in a car seat, came home exhausted.  A day in the life of Asa.  

Thank you always for your prayers.  We have a copy of the pictures.  Other than seeing Asa's liver has grown, we are clueless.  We will go for follow up in clinic on Thursday and they'll run bloodwork then, too, for the cancer protein marker, the one that was last 13, down from 51K+ and normal is 12 and below. Yay God!  Miracle kiddo.  Tests are complete for now!  Please pray for Caroline.  We ran into their family in CT.  Caroline was having some odd issues and they have to move her back inpatient for a bit.  Please pray for supernatural wisdom for docs and healing for her.  

Thanks today for the escape back home.  Grateful for what appears to be good results and what we hope to be last imaging for both the child and the parents' sake. Grateful to see Andy's nice digs today and that he's moving up in the world and has a neat roommate.  Thankful for kids who cooked and covered and friend and a son who chauffeured my students about today.  You are appreciated! Very grateful my boys can go to college and for God's more than abundant provision for that. Thankful that Asa has finally crashed after a long and taxing day.

We survived!! - August 22, 2014

We survived!  Thank you for praying.  We had much fewer incidences today of crazy.  I can't say it was a picnic, but we are still sane.  Tony drove into med center before dawn for carpal tunnel surgery.  I drove team 2 down after, but first stopped in town to pick up prescriptions only to find they hadn't been called in, so on to the med center we went.  We had the chore of keeping Asa awake and succeeded for all but about 15 minutes of our car ride.  We picked up dad and drove his car on to Texas Children's.  In our time lull, some of us went to oncology floor to visit Caroline's family as she was there recovering from an infection.  Then ensued the wild prescription goose chase.  Boys went across street to pharmacy to get Dad's prescriptions and they didn't have the drugs.  Went down to Walgreens and their computer systems were down across the board.  So, we yet again aborted our mission and went on to Asa's echocardiogram appointment early. I left to get a car and go down street to get Tony's meds only to be called back empty handed because they called Asa back early.  I returned to find Asa getting prepped for echo throwing a walleyed fit.  Thankfully he was tired, but he put up quite a fight before he finally took the meds and crashed.  Echo was uneventful, thankfully, other than having an anesthesia hungover husband with hands in oven mitts who had to be taken to the bathroom like a toddler.  Whee!  We forged home through Houston Friday traffic, but not without waiting an eternity on valet parking, picking up our other car, grabbing a burger after the long day, and finally succeeding in picking up prescriptions in Tomball at the good ol' hometown pharmacy.  But, it's all done and much less eventful than Tuesday.  It sounds sad, but just glad to check the day's boxes of surgery and testing off.  

We have one more set of testing with full sedation, MRI and CT scan on Tuesday.  Thank you for covering us in prayer today.  It was felt and appreciated. We do have clinic visits as well here and there in future weeks. Should have some results from this week and next week's testing late next week.  The expectation is that cancer blood markers will continue to drop and scans to be clear.  Everyone is very curious to see what Asa's regenerated liver looks like.

Thanks today for big kids to help drive and handle both their father and Asa.  Glad to have the window to visit the oncology unit.  Grateful Asa was not more difficult in echo.  Thankful to be home in one piece and just resting with my mitted husband and bald baby.

Med center torture - August 20, 2014

All this for a hearing test!  One of those days in the meds center.  We went to oncology clinic for bloodwork and Asa was livid because they stuck two fingers.  He left screaming and went straight to his hearing test raging mad, promptly rolled off the scale where he was squatting to be weighed and hit his eyebrow.  Madder yet.  While crying, we found out from nurse that in some confusion about times, that we had fed him too late, so we had to postpone the test two more hours, two more hours of a hungry toddler.😁 Asa finally fell asleep, at which point in time, the anesthesiologist decided he wanted to use Asa's portacath for the procedure, so we had to pin him down and access that. (If they had done earlier in clinic, he would have been spared holes in his fingers.) Asa finally went back at least 2 hours late.  Test revealed no real new changes.  Still a bit of upper frequency loss, but okay for the time being.  Not sure he can hear the birds sing, but he can hear us.  

Please pray as we have a sedated echo on Friday and Tony has carpal tunnel surgery the same day.  We would like a calm day, no confusion, no car sun roof stuck open in rain (see earlier post btdt). No dumb comedy of errors. Just general sanity would be very nice.  Pray for Tony's family, too.  His grandmother died early this morn and we found out before we even started this morning's adventure.

Thanks today that Asa's hearing is stable, even if our sanity might not be.  Grateful for big kids who make dinner.  Thankful for patient teachers.  Grateful for short time with hubby and that he escorts is to the med center even when traffic is a bear.  Happy that neutrophil counts are way up approaching normal now.  And that Asa shoveled a big dinner.

Eating and off to testing - August 19

Houston, we have an appetite! Asa's appetite has slowly returned the past few days. He's back to drinking some bottles, feeding himself yogurt, not quite shoveling just yet, but definitely improved. Even a comment today on his color. I'm not sure we realized how pale he was much of the time.

Appreciate prayers as we head back to testing tomorrow. Follow up blood work from last week, followed by a big hearing test tomorrow. Long day. Please pray that Asa is cooperative for the testing as last time not so much. Prayers for our sanity as we have one clinic visit, 4 sedated testings, and a hand surgery (dad) in the next 7 days. And no germs. Even though we are not in the land of neutropenia, it would be nice to be well.

Thanks the past few days for a happy Asa. Everyone is very grateful for lifted lockdown. We have lived on an island for six months and it's been a bit claustrophobic even for the more introverted parties. Grateful for fun visitor and family time, even if it's been spent preparing for school. And, church. Thrilled to be able to go again.


No Mo Chemo - August 15, 2014

Annalisa said I should title this, "No Mo Chemo!"  Sounds pretty good.  We were finally let out today and after a miraculous six months, driving away from the hospital this afternoon, it felt like God was setting us free from a longtime burden.  I had debated if the last day of chemo should be Asa's last daily post.  After all, it appears so much of the struggle is past and as we talked with docs and nurses today, so many of whom played huge roles, we thanked them for their part in that miracle.  I'm not sure where miracles begin or if they truly ever end. We just know we've seen the hand of God.  Not quite sure why we got to spend the last five days inpatient and have Asa do his last minor chemo inpatient, but perhaps it was just to realize that we really do need to walk away and ask what's next.  We left too many behind in the deep trenches who need hope.  Asa is home, feeling "vincristine grumpy."  His little ray of sunlight for today, minor miracle, is that he walked up and down the oncology floor and came home and took lots of independent steps.  He was almost developmentally there 6 months ago and instead of walking, ended up on a ventilator.  What a joy to all to see him accomplish that milestone!  

And how were we let out of the funny farm today?  Your prayers!  Bloodwork this morning showed an increase of 300 points in his neutrophil count to 350.  Docs shocked to the point of questioning the number, but Asa walking the halls sealed the accuracy of it.  Still low, but on way up and they sprung the gate for him.  Thank you for praying!  Even though we are finished technically, we have hearing testing and final imaging the next few weeks and literally years of follow-ups.  Cancer is still quite the monkey on the back, even when they say it's gone.  Please pray as our family continues on that path.  Kids are excited because lockdown is about to be lifted, the day they've waited so long for.

Thanks today obviously for all of the above.  Grateful to be in our own bed, eat real food.  Asa so thankful to be home with his siblings and shoveled down a lot at dinner.  We are thankful to see that appetite return.  We are very thankful especially for all of you who prayed and stood by us.  Please do pray as we adjust back to some normalcy.  I think cancer has some of its own version of PTSD and others having been in our shoes concur.  Recovery takes a lot of downtime!  Thank you for being so faithful!

Another day in house - August 14, 2014

A bit better day today with Asa, at least some freedom from tubes and meds.  Docs backed off on electrolyte meds and removed all antibiotics because cultures were negative.  We are now sitting here waiting on neutrophil counts to rise.  We went from zero to 30 now.  Need to be headed uphill to 500. Asa was a bit happier today, likely because there was less conspiracy to shove him full of foul-tasting syringes full of pink stuff and that he was released to go wireless.

Please pray that Asa's counts rise quickly so that we are not numbering our days here.  Pray that Asa's platelets and hemoglobin stay up as his counts recover.   Pray that as his counts rise, that he stay well.  And pray that we would use our time here well as long as we are supposed to be here.

Thanks today for a more pleasant day and a good lunch with a new friend.  Grateful Asa was more happy go lucky and enjoyed playing with friends.  Happy for lots of steps and more appetite.  Thankful for folks who help make our stay here pleasant and think about our comfort and sanity.  Grateful for good nurses and good conversation.

Meds! - August 13, 2014

Asa was just beyond frustrated today with his meds and after a few day of this routine of fit throwing and barfing them back at me, so is his mother. 😁 All of this is for electrolytes, so after a few days of extra magnesium, we are also cleaning up the other end.  The good news is the appetite and taste buds seem to be returning.  We don't have an official neutrophil count today, but they are starting to head uphill some which equates to going home eventually.  Praying they lift electrolyte meds soon for all our sanity.  No fevers for a good while now.

Please pray as we all endure these short term medical afflictions.  Grumpy toddlers are such a joy!  I wouldn't want to take this stuff either.  Pray we all stay well and rested as we finish all this.  And no barfing and spitting back meds.  Pray that Asa's counts rise and his immune system not react too strongly to anything possibly lingering in his system.  He has no adenovirus.  Pray the rest of us stay sane and get ready for school.  Pray we have good interactions here and have favor from the docs.

Thanks today for visit from Daddy, getting a few things done besides walking Asa in circles, nice visits with friends and other patients, decent food.   Glad for smiling faces and silly baby eating again!

Still hangin' at TCH - August 12, 2014

Another day at TCH. Asa is better and in the waiting game, waiting on his counts to come back up. This morning he had a grand total of zero neutrophils in his body, not a safe place to be out in
general public.  He feels much better.  His blood cultures are negative so far.  He got more platelets today.  He will get blood tomorrow.  His poor little system has just had a hard time recovering from his last inpatient chemo.

Clearly, please pray that Asa's immune system kick back in.  We are all rather bored sitting here just waiting with a wiggly toddler.  I think we hiked miles around the oncology floor today to keep Asa happy.  Pray that as Asa's counts return that his immune system doesn't go into reaction mode and make him sick.  He continues on antibiotics until cultures are clear.  Pray for sanity for us here and those at home.  Pray that God would use us here if we have to sit here.  Pray that we be adequately prepared for school next few weeks.  Kids at home, kids at college.

Thanks today that Asa is much improved.  He's all over and into everything.  Whee for us!  Grateful for a good helper, people to talk to in this nuthouse.  Happy for windows and a beautiful sunset again and a baby who loves every minute of it. And chocolate as our reward for walking the halls for hours.  Thanks to crew at home holding down the fort. And good nurses.  We've had several.

At hospital - August 12, 2014

We are currently taking an unplanned vacation at Texas Children's Hospital, squeezing it in before school starts.  Asa is definitely improved today with rounds of antibiotics and fluids and electrolytes, and probably most importantly, platelets and blood. Fever has stayed at bay.  We have had a real issue with nausea, but I really wonder how real it is as the electrolyte meds are a total pain to keep down.  We will be here a few days at least until blood cultures come back and Asa's neutrophil counts become upwardly mobile.  We are imprisoned to a bunch of test results even if Asa acts fine.

Please pray mostly that Asa's counts rise and that as they do, Asa will stay well and not have a lot of symptoms of illness.  Pray that antibiotics work to nip the cause  of the fever and that we have no more lingering viral issues.  Pray for nausea to stay at bay, that Asa start eating again, and for temps to stay away.  Please pray for sanity for all.  We are quite burned out of this routine now and tired.  Pray our crew stays well. And sleep would be nice.

Thanks for your prayers sustaining us and kids holding down fort.  Loved the amazing storm we watched tonight from our window on the 9th floor.  We are thankful Asa back to himself today.

Back at TCH 😣 - August 11, 2014

This is sort of a picture of the downhill slope today.  Asa ran low grade fever most of the day, was somewhat nauseous.  Later in day it spiked enough that we had to bring him in to TCH to be checked out.  He was also pretty lethargic for him, though he has given all nurses and docs what for since he's been here.  They don't know what's causing the fever, but will give fluids and antibiotics because his immune system is so depressed from chemo and likely will keep us for 48 hours.  Usually have to have 24 hours free of fever to release.

Please pray obviously that Asa improve quickly and they get to the bottom of this.  Pray that we have good medical staff supervising and if they admit, that we have room on oncology where there's better supervision.  We are at the end of this mess and would like this to be past quickly and easily. Pray Asa's counts come on back up so this is not so much a problem.  And pray that our household stay germ free.  

Thanks today for a quiet morn, even though we ended up here where none of us want to be.  Thankful for teens who cook and manage things well.  Grateful for hubby who always drives us through the traffic to get to the doc.  And today we again enjoyed too much pie.  🐷

Still grump in' - August 9, 2014

Another day in the neutropenia (low count) countdown.  Asa was still nauseous today but didn't throw up.  He's acting what I refer to as "Vincristine (name of his weekly chemo) grumpy." Just never his jolly self and always clammy to the touch a day or two after.  After inpatient chemo last week, his grumpies just haven't totally lifted.  He seems hungry but has little appetite.  Praying that lifts soon, as it did last time.  Pray Asa sleeps soundly, too.  He's waking quite a bit at night hungry, but he won't eat adequately during day.

Thanks always for standing behind us in prayer.  It means so much!  If we forget to say thank you in the chaos, please forgive us! Please pray that we all stay well for another two weeks.  This Thursday is Asa's final chemo, Lord willing.  His counts should begin to rise after that.  This round has been a bit harder than the last few, so please pray he springs back quickly as school starts.  We have lots of testing between now and the end of the month.  Please pray as we have to do several sedations or partial sedations.  That has yet to be fun with a toddler.  Pray for Asa's hearing, that it not deteriorate further from the chemo.  We know the chemo is needed to knock things out firmly, but it's hard knowing that it can cost hearing, hard when your toddler still doesn't talk much. We know he hears, but you can't help but wonder how much when you know that's a real issue at hand.  Pray for our endurance these last weeks as we move to a place where perhaps cancer no longer owns our time.

Thanks today for fun walk and long naps.  Happy to see Asa growing and taking some baby steps, looking like a big kid.  Thankful that the peach fuzz hair is still intact, though the color still eludes us.  Perhaps you can see a faint shadow of hair in the pics?  Maybe? Happy to see boy content to play cars and play with his brother's sweet kitties, just normal stuff.  And we appreciate and are thankful for Zofran.  It was a miracle drug that saved me in several pregnancies from hospitalization and it's saving us a lot of grief with Asa.


Back in barf zone - August 8, 2014

Still struggling with nausea today.  I thought it was getting a bit better, but I think Asa's little chemo yesterday may have made him feel poorly enough to be more nauseous today.  He did eat more, but it seems a lot has come up.  

Please pray as we walk through all these last little bumps in the road.  Pray that Asa stay well, that we stay well and get over lingering allergy sinus junk.  Appreciate prayer as we are all locked down here in the next few weeks prepping for school, taking care of the last of the doc appointments, last of the testing, etc.  Pray we endure happily, get stuff done in spite of the confusion and tyranny of the urgent.

Thanks today for good visits and God's provision of what we need.  Thankful for jobs and flexibility and working cars with A/C in the horrid heat.  Asa is grateful for mint chocolate chip and laps to snuggle.  I ate too much peach.  We are all thankful for bed to sleep and new days.

To clinic and quickly - August 7, 2014

Oh, clinic day!  Oh, clinic day! How lovely to exit early!  Record short clinic day.  In and out in 2 1/2 hours, not counting drive.  Nice to come home on a Thursday.  Asa was still a bit nauseous today, though he perked up and was better later in day.  Still his silly self.  His counts are very, very low for this point.  Hoping they make the turn quickly.  This chemo has really hit him hard.  His weight had dropped, but docs were not concerned,  Asa did eat some dinner tonight.  We keep trying to feed him.  

Please clearly pray that Asa stay well, that we all stay well the next few weeks. We probably have at least that long before counts begin to rise again.  Cancer protein markers are very good.  All docs pleased.  Pray that Asa opt to eat as well.  He was down below 10 kg again today.  Pray for our endurance.  We have 4 tests (1 major sedation, 2 minor) and 1 clinic before the end of the month. Home stretch but stressful.  Pray for little boy, Brendon, that we met at clinic.  So many tough things on that unit.

Thanks today for being in and out so fast.  It was cancer camp week so clinic was slow.  Grateful for family time and getting a bit of paperwork done.  Thankful Asa has been happy go lucky.  Happy to hear a few words. Asa says flower now and definitely Mom and Dad.  Thankful to see a few steps, too.  We celebrate these cancer delayed milestones!

Crazy train with Asa and the rest of the crowd - August 6, 2014

Yes, I think Asa joined us on the crazy train today.  We are just trying to keep our hands inside the car and hold on for dear life until we arrive. Asa is still a bit nauseous.  Keep hoping that will lift and we will see more eating.  You can visually see fat falling off him and that's frustrating. He's nursing but picking at food and won't really take a bottle or other drink.  Had birthday cake for sister tonight and he wanted cake badly, but hardly tasted it, just painted his high chair with it.  Chemo is so brutal to the taste buds.   

Tomorrow is clinic day.  Please be in prayer that nausea stays at bay and our minor chemo is uneventful.  Tony and I are both frustrated that this last chemo round has been harder on him after all he's endured.  You get to where you just want it to be over with and it drags on, when we should be grateful that he has no tumor, etc.  Pray that germs stay at bay the next two weeks.  Life on lock down yet again and kids are very ready to see light at the end of the tunnel.  Please be in prayer for our friend, Caroline, as her bone marrow biopsy still shows leukemia cells.  I know their family is discouraged and options are very limited now.  They are going home to relax and reassess.  Cancer is just stinky.

Thanks today for birthday fun and crazy, crazy little girl who keeps us young.  Grateful for dental insurance and good teeth reports from most.  We have a few slackers.  Thankful for cars that run and extra drivers and a borrowed backhoe to the rescue.  (Don't ask.)

Loooooong day - August 5, 2014

We spent a lot of time in the car today.  Asa woke up feeling a lot better today in terms of nausea, but he really doesn't have much appetite, to the point we are watching his hydration a little. He was okay today, playing and being his self, but it was a long day.  We voted and the van went into limp mode on way.  We returned home to a serious crisis at the neighbor's house. Had voice lessons and an appointment in town and had to make a run to the store for toilet paper.  It was a very tiring and stressful day and poor Asa got drug all over.  Not the way to have a pleasant day with a toddler, but necessary evils. 

Please do pray that Asa eats and drinks.  Do not like seeing him so uninterested in food.  We go back to clinic on Thursday for small chemo.   Pray that we have some stress-free moments.  We are all pretty run down and tired and could use some rest.  Please pray we all stay well.  Still one recovering from wisdom teeth.  Pray for our neighbors and their crisis far worse than anything light and momentary going on here and that we can be a good witness.

Thanks today that the van did get us home and not leave us to be rescued in August heat.  Grateful for a house full of voters who can have an impact in our crazy world.  Thankful for sons not afraid to pray and kids not afraid to join in.  Thankful that God's timing and provision is always good even if we don't get it at the moment and for kind neighbors and friends.  Thankful for backup cars in crisis, even if they can't hold the crew, they run.

Still chemo recovery - August 4, 2014

Asa has had quite the day.  Started off with an early bang waking up puking again. Yet a little more Zofran and the world was better yet again.  Hoping that tomorrow those after effects totally vanish.  He still doesn't have a huge appetite, though somehow pound cake was appealing to him.  If it's anything like last round, he won't eat too much for a few weeks. Asa discovered that he can look under things today and kept getting on the ground looking under furniture.  It was funny.  He's taking more and more brave steps.  

Please be in prayer that counts don't dip too low and nausea stays at bay.  We have spent so much time coddling and catering the household to a sickly child the past months that we are trying to figure out how to manage household affairs and school and supervise Asa.  He's just not been transitioned well into entertaining himself.  Pray for our family as we deal with the wind down to normalcy, or approaching the end of the tunnel, and starting schooling, launching of college kids, all while handling a special toddler.  

Thanks today for cooking fun, for birthday cakes and peach ice cream.  Grateful for God taking care of silly needs regarding school books.  Just one less thing, one less expense.  Yay!  Grateful to be making a few steps ahead of the game instead of all on long term hold. And thankful for silly, silly kids.

Child dedication and no more tossing of cookies - August 3, 2014

Asa is improved today.  He got up and ate, got his final post-chemo shot, and threw up before we left for child dedication at church this morning, but after meds and even after they wore off, he's been a live wire.  Missed the pic of his throwing globs of mashed potatoes off his high chair tray while we were praying.  It seems the chemo after effects have now vanished.  Hallelujah!  He's still up and at 'em this evening.  He's been swimming (say yes to that port!!!) and run all over the house.

Please be in prayer that Asa's counts don't drop too low over the next two weeks.  We have a lot to do to prep for school to start, another set of wisdom teeth out tomorrow morn.  We go back Thursday for clinic and the next to last outpatient chemo.  All hopefully and prayerfully uneventful.  Caroline has a bone marrow biopsy tomorrow and would like prayers for that.  Pneumonia still lingers.

Thanks today for turning a corner with the chemo, for sweet home health nurse who comes early Sunday morning so we don't have to stay inpatient and be tortured.  Thanks for fun meals with kids, supportive church friends who have prayed, and precious Pastor Scot.  And, of course, we had pie.  Again.

Last inpatient chemo! Check! - August 2, 2014

Completed.  Last inpatient chemo.  It was a relief to walk out of that place today knowing there are no future plans to return overnight.  We have graduated to clinic chemo visits only, check ups, and testing.  Praising God for the plump little boy that we carried out today.  As you walk and talk on the oncology ward, you realize what a privilege that is after 6 months.  For many, it is years, a few, not at all.  

Please do continue to pray.  We have the next 3 weeks of lower counts and household lockdown.  Asa is a bit more nauseous after this chemo and we are praying that lifts very quickly.  He's fine most of the time, but can suddenly feel nauseous and toss his cookies.  Praying we have a quiet night in that regard.  Please continue to pray for Caroline, that her pneumonia and fungal issues go away so she can go to bone marrow transplant. Leukemia is a tough cancer.

Thanks today for home and our own bed and no middle of the night chemo.  Grateful for dinner made and sweet phone call from dear one.  And chocolate pie.  Pie makes lots of things better.

Final inpatient chemo - August 1, 2014

A chemo day at hospital with Asa. Once we got checked in last night finally things went smoothly.  We've had excellent nurses and docs.  Asa has felt good until late afternoon when nausea kicked in and he's thrown up once.  We actually spent the day visiting with others.  Abi went to see Caroline and stayed and played games, etc.  It's just one of those situations where if you've got lemons, you get together with others and make lemonade.  Bad cliche, but true.

Please pray Asa sleeps tonight and doesn't get nauseous or not sleep.  Second round of chemo is overnight.  We should be released tomorrow morn.  Pray that this chemo be effective, that the grumpies and nausea be minimal, that counts stay up over next weeks.  Pray that Asa eat, too.  The slow chemo appetite has begun again. Sleep tonight would be nice, too.  Please continue to pray for Caroline as she fights a fungal issue.  It was a joy visiting with her and her family today and they appreciate your prayers.

Thanks today for not being locked in our room, for play room and the family room.  Grateful for my helper, my kiddos that hold the fort down.  And chocolate cake was good, too.

Inpatient chaos - July 31, 2014

You know it's been a long day when...1) you drive back and forth to med center twice, toddler not pleased, 2) you wolfed down 2 of 3 meals in a mad rush 3) you sat waiting at least 8 hours of the day with a toddler 4) the highlight of the day was a Sams run.  Went to clinic this morn, all looked good, waited for a room admit much of day, at 3pm they totally changed tune and sent us and all other admits home.  Got home, 45 minutes later they called and asked us to come back.  Explanation (of which they gave none, but you find out because you know the nurses): a plumbing problem, a major one.  It's funny, but not funny, because it's so crazy, but funny because we have been in rooms here where we had to call the plumber daily to the point of comedy.  So, at 11pm, after waiting 2 1/2 hours after we arrived on fluids and chemo ordered before noon today, Asa is getting started.  Whee!  This will hopefully put us out by Saturday afternoon sometime.

Good news today is that Asa's cancer protein markers are down to 13, that's 1 above normal range.  Praising God!  He's almost there.  He also weighs 22 lbs or 10kg so that pushes him into a new weight range for chemo quantity.  He will get a bit more.  Please pray Asa stays well.  His reaction the past few has been minimal.  We'd like to keep it that way.  Pray for good docs and nurses.  Have a good one tonight and know the day team is a good one as well.  Ran into Caroline's mom tonight and she's had a rough day.  Pray fungus and pneumonia stays at bay.  We will go visit tomorrow.

Thanks today for great numbers, that Asa has crashed for night.  Happy the kids at house are better and things somewhat normal.  Grateful to visit cousin/uncle Mark at MD Anderson.  He was doing well though he had a bad allergic reaction to a med after we left but is fine now.  Grateful for hubby who put up with all of the chaos and good lasagna that Joyce made that we saved for this rainy day.

Busy, busy, headed back to chemo - July 30, 2014

Crazy Asa today!  Still going like the energizer bunny tonight.  He's been feeling so much better that he's not crashing at his normal time and is instead totally wired.  Mom and Dad would like him to crash.  Zzzzzz!  Still verging on walking, standing a lot and occasionally taking a half step alone.  Still growing hair.  Eating everything in sight and guzzling several bottles a day.  Weighed in at 22 lbs this morn.  My old shoulders are feeling it.

Tomorrow is chemo day.  We go inpatient for probably two nights, though last time it was one.  Please be in prayer that there is a room available, that we get in quickly, and that there are no bumps in the road.  Pray for no germs, good nurses, good floor docs, sleep.  We are all looking forward to seeing an end to this game.  Pray for good health here.  Today and next week are dental work messes for our crew.  Still have one recovering from wisdom teeth.  A lot going on at home.  Continued prayer for Caroline as she's still struggling.  We will likely see them inpatient and I will give her your greetings.

Thanks today for fruit, friend who came to the rescue of my sanity. Grateful that Asa is feeling good and really eating.  Please pray his appetite doesn't drop the next few weeks. Thanks to my kids who fill in for one another in shifting circumstances, illness, and job schedule shifts.  Pray for us as we add school to the top of it all.

Here and there with Asa - July 29, 2014

Wild day around the house and here and there and all over with Asa.  Asa has been venturing more and more to take a few steps by himself.  It's scary.  He has crawled and cruised for so long and then was set back by cancer, so he's just now starting to be strong enough or brave enough to stand independently and take a few brave steps.  We will take those milestones.  

Please pray as we approach chemo this week.  Asa has been a bit sniffly, not too concerning as he's always that way when he plays with the cat or is outside too long, but we want him to be germ and virus free.  We are assuming his counts are at least minimally improved as he's been very active and not bruising.  Please pray we can get in and out of the hospital this week quickly.  We are already so done with that place.  We love the people, but are ready for this segment of Asa's life to be over and return to some normalcy.  Pray for good nurses, good floor docs, good interactions. Pray that sanity stay intact at home and that we are out in time for child dedication Sunday.  Please pray for our friend, Caroline, who's feeling pretty ill with a virus and pneumonia as well.  I know her family would appreciate your prayers.  

Thanks today for happy giggling baby on spite of being drug everywhere.  Happy to see those brave steps and normal development.  Happy to toss Asa on my hip looking out and not have to worry about a tumor.  Glad for peach pie - we're Southern - we eat too much pie - at the end of the day.  It's stress relieving.  Thankful for  a fun visitor that my kids appreciated in all this lockdown.

Filling up on Froot Loops - July 28, 2014

Obviously while I was dealing with a recovering wisdom teeth patient, someone was having a great time with Asa and froot loops.  Nothing short of a zoo here sometimes.  We all tried to entertain Asa today while juggling other tasks with folks out of house or out of commission.  Abi tried to make a make-shift play yard, but Asa overrode that idea and became a gifted escape artist and the dogs decided his yard was a barrel of monkeys.  Never a dull moment.

Seeing as it is chemo week, Asa's appetite is improving.  He's been eating and guzzling bottles the past few days. Hate to give him chemo again and watch his taste buds take a nosedive yet once more, but it's the last one.  We will be very glad when this process is over.  Please pray for no germs, good counts, and smooth sailing later this week.  It's a full week all around with appointments and just normal activities.  Pray for endurance to the end of the week and that we might get preparatory work done before school starts.

Thanks today for snitching toddler who actually wants food.  Grateful, so grateful he is eating and that he loves the bathtub.  Thankful for my helpers today who picked up extra so I could deal with down kiddo.  Thankful for Popsicles, pie, and yogurt.

Sunday with Asa - July 27, 2014

Breakfast with Asa and Daddy today, then fun afternoon of games, play, watching Frozen, nap, followed by time in the kiddie pool.  Asa can't be in the sun as a chemo patient, so it's a real treat now with a port to get in even a kiddie pool.  He liked it and the hose.  Wrapped it up with spaghetti, pie made just for him by Avi, a quick bath and off to bed.  Exciting toddler life.

Please be in prayer that we stay germ free.  We have a lot on our plate this week with a kid working camp, wisdom teeth out for another, and chemo.  A lot of coming and going.  Pray that we coordinate with the least amount of stress possible.  It seems just from observation that Asa's counts and platelets are recovering.  He's not bruising easily.  He's been a little grumpy, but overall seems well.  Pray that he sleeps.  He's been a bit restless at night.  Pray that inpatient goes smoothly this week, that God would put us as usual at the right place at the right time.  We would like to be out of the funny farm by Saturday as child dedication is Sunday morning at church.  

Thanks today for hash browns and peach pie, time with baby in lap.  Grateful for playing games with kids.  I tied. :). Thankful for cool evening with no mosquitoes and baby ready for bed.

Happy Asa - July 26, 2014

Asa's such a funny, laid back kid, for which we are grateful.  He's loud and opinionated, with enough fight to keep him going like the Energizer bunny, but mostly is just content in his crazy world of siblings, barking dogs, emptying bins and cabinets, and singing loudly or yelling no-no-no while laughing, refusing to say much else.  Except for the bald fuzz head and has a port, you sure wouldn't know he was a cancer kid.

Next week marks final inpatient chemo week.  Please pray as we get ready for that, that Asa's counts would be back up and that the hospital would have room, and that all will be easy, peaceful, and boring at home, that we get out quickly and reasonably.  While you pray, we would love great floor docs and nurses, too.  Please pray for our friend. Caroline, especially.  She's been so sick all week with virus.  Pray for her parents, too.  They've been on such a long journey compared to ours.  

Thanks today for a run on bean freeze with a car full of crazy kids just for the fun of it.  Grateful for smiles, soup, too much bread, fun movie.  There's always too much to do, but sometimes you just gotta let it go and enjoy silly giggling and Nutella for second breakfast.

SuperAsa's after chemo non-events - July 25, 2014

Asa did well today in spite of low counts and it being a day after chemo day where he's typically grumpy.  I think the blood yesterday helped.  He was very busy and pretty content in his little world of so many bigger people who love him.  He said the word "balloon" today and barks at the dogs and tries to join their horseplay.  Wish we could take him out in the sun to play in the kiddie pool.  No sun with chemo and with low counts and low platelets, that's sadly a poor idea.

Please do pray we stay germ free. We've been out a bit, but only for necessary stuff.  I know it's so dull for the kids to not get to go to activities, but praying that all comes to an end here in 3-4 weeks.  Some normalcy other than household maintenance would be gloriously wonderful!  Pray that Asa's hearing stays intact so he keeps learning words.  

Thanks today for SuperAsa!  The cape is great!  Hysterical!  Along the lines of the ninja cancer fighting hat!  Great fun!  Thanks for completed paperwork, taking care of dull but necessary stuff for house and school.  Thankful for God's provision for things we need when we are too tired to worry much about them.  Grateful for quiet weekends.