A giggly day! - Sept 27, 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!

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.

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.