A Plea for Help

First, a quick update. Cole is doing well. He feels great and we have had no low blood sugars. Cole is now back on 6MP and another of his chemos, methotrexate. The plan is that he will receive his usual dose of steroids and vincristine this coming Tuesday. So, things are getting back on track.

The big news, the normalcy changing news, is that the decision has been made on how to treat Cole's fungal infection going forward. He will be getting an older anti-fungal called Ambisome (brand)/amphotericin (generic) which is very effective in treating aspergillosis (the fungal infection which Cole is believed to have). The side effects are mainly infusion toxicity (which he can be pre-medicated against) and renal damage/failure (which can be monitored). As Dr. Owen said, it is not a matter of "if" he has some kidney damage, it is a matter of "when" and to what degree. They will be monitoring him very closely.

What makes it normalcy changing is that amphotericin can only be given by IV infusion and it must be given at the hospital in order to monitor for the two major side effects. This will necessitate Cole being at the hospital twice a week for the foreseeable future (Tuesdays and Fridays). It also means that he will be accessed (via his port) from Tuesday to Friday. Given the stricture that we are not allowed to bring our children to clinic with us, we will now need child care for Logan and Ava on most Tuesdays and Fridays.

We are asking our church family and immediate friends for help with this. If we can find 6 to 8 volunteers then we can arrange it so that no one person will watch Logan and Ava more than once a month. This is obviously a lot to ask, and we do not ask it lightly, but we really have very little choice. So far, we have had 3 awesome folks offer to help us out, so if we can get 3 more, we will hit what we consider our minimum.

If you would like to help, please contact me via email or this blog.

Faith Stretched Thin

My faith is stretched thin. There is very little of it left, to be frankly honest. God often seems far away, if he seems there at all. I constantly feel futility when I pray and therefor do very little of it. Having a live, vibrant faith right now is daunting and nigh on impossible.

It would be so easy, right here, right now, to throw away the faith that I have been given as a gift since it seems of such little use. After all, does something that seems of no immediate value have worth? Quite honestly, I almost did decide to throw away my faith, so frustrated was I.

I did not and will not, however. I have decided to hang on to my belief and pray that the Lord strengthens it. "Lord, I believe, but help my unbelief!" Up til this point, I had never realized that faith, and being a follower of Christ, is as much, if not more so, a decision as it is anything else. When we are hard pressed, when we are beaten down, when God seems so far away, then is the time to decide to continue to follow him. It is such a blessing that even though he seems far away to us, we have an innate immediacy to him. He may seem far from us, but we are never far from him.

Here's an update.

We were discharged a week ago and sent home on no chemo and no anti-fungals. Cole has felt awesome for the last few days and is now behaving as any normal and extremely talkative 3 year old. Gone are his constant belly pains and we have had no repeat low blood sugars.

The doctors are pretty certain that the low blood sugars were a result of the 6MP (mercaptapurine). Last Friday, we started back on them, but at a half dose. As well, we altered the time he is getting them. Previously, Cole would get his 6MP just before bed, and would not eat again til he woke up. Now, he can have a snack right after he wakes up from his nap (normally around 3) and will then get his 6MP at 5. We then eat dinner at 6 (there are food restrictions in giving 6MP).

We check his blood sugar in the morning when he wakes up and every night at 3AM. So far his blood sugars have been no lower than 71, which is awesome.

The really big thing on the horizon right now is how to continue to treat Cole's fungal infection. Our infectious disease doctor has bluntly stated that we need to have an outside consult, if not several. Cole's case is "complex and difficult" (I cannot tell you how sick I am of hearing that) and our doctor would feel more comfortable if there were more than one doctor in on his treatment. Currently, none of the treatments for his fungal infection are very palatable and we're going to be seeking that second opinion.

Please pray for wisdom for all of Cole's doctors and that we find a good alternative to treat Cole's fungal infection.

Jedi Mind Powers!

I want to take a moment to thank our families.  Since we've been in the hospital this time, we have painted and redecorated two rooms, taken down a huge oak in our backyard, power-washed our house and swing set, sent Dalynn on a mom's night out and dedicated our two youngest children at church.  We had most of this planned for the near future, if not this weekend just past, and so we had my mom, Susie (aka:  "Grammy" or "The Gramminator") and Dalynn's dad, Gary (aka: "Granddaddy Gary" or "Great Day Granddaddy") on tap to come on up under the auspices of seeing their grand-children dedicated.

Now, in all honesty, I was planning on doing the painting and curtain hanging, contrary to popular belief by He-Who-Did-All-the-Work (Gary), but it seems like whenever there's painting to be done around our house, Gary does the bulk of it.  I still haven't quite figured out how that works out, but I suspect it's some form of latent Jedi mind power on my part.

Then there's the Grammy-Granddaddy effect to be taken into account.  When the two of them end up in our house at the same time it becomes this mad dash to see who can accomplish the most in the shortest amount of time.  One thing Dalynn and I have definitely noted is that if one of them arrives before the other, they immediately attempt to do all of the laundry before the other shows up.  Gary was the first to arrive this time (by a full two days).  He took that opportunity to put painting on hold and spend several hours catching all of the laundry up (he is a laundry machine, I might add).  Grammy has been known to do similar things (she is also a machine).  Having two people in your house hell-bent on outpacing each other in the chores that they do can really work to your favor!  Once again, I believe it is some latent Jedi mind power on my part.

The power-washing came about when I found out that my cousin, Jeff Steele, is doing some power-washing on the side for a very reasonable price (if you'd like his info, let me know).  Our house was in desperate need of it, so we hired him to come out and do it (and what a good job he did).  He heard that I was going to sand the swing set and suggested that he could power-wash it to the same effect, so Dalynn told him to have at it.  It is now ready for staining with nary a bit of elbow grease on my part!  That's right, more latent Jedi mind powers.

Jeff, while he was at our house, heard tell that we wanted the gigantic (and sickly) oak in our backyard taken down.  Jeff recommended someone who had taken several very large pines down for him.  We called this person (Steve) and Steve said he could do it that day for the best price we had been quoted.  He did, and we now have copious amounts of oak ready to be split in our back yard.  Should you wish to retrieve some of it for your own personal use, please let me know, I'll let you have it for free (be forewarned, this is a Jedi mind power in use).

All of this was done while Cole and I were in the hospital.  It was only made possible by our families, but it illustrates a point that I've felt for a very long time now:  We cannot let cancer dictate our lives to us.  We must make some concessions from time to time, but life must go on, and it will!

Cole is doing well.  We had a "leave of absence" from the hospital today (Mother's Day, 2009) so we packed up the fam and headed out to our church.  We had Logan and Ava dedicated (we were in the hospital last Mother's Day as well, I believe, and missed the chance to dedicate Logan then) and then spent a quiet and semi-restful afternoon at home before Cole and I had to make our appearance back here at CHKD.

Cole's AHTC test came back and it showed that he does not have adrenal suppression.  This puts the spotlight on the extremely rare side effect of 6MP.  We still don't know how we're going to go about addressing it if it is the 6MP side effect (or, for that matter, how we're going to confirm that it is), though.  One thing about being on furlough today is that we didn't get to spend a lot of time talking with doctors about what to do from here on out.

Cole is NPO tonight and will have an endoscopy and a sygmoidoscopy tomorrow.  This will hopefully rule out any major GI problems which could be causing his belly pain.  The slots that we could possibly go in are 12:30 pm and 3:30 pm.  I don't really want to have to keep Cole without food til 3:30 pm tomorrow, so please pray that we get slotted into the 12:30 slot.  We may work a bone marrow in there, as well, for peace of mind.

Tuesday we are slated for a head MRI and a full-body CT scan, so Cole will be NPO again, but we are also supposed to be discharged Tuesday afternoon/night, so we're seeing the light at the end of the tunnel.

Sugar, Sugar Baby

So, we're in the hospital again.  Life has been pretty crazy these last few days.

Cole has been suffering from episodes of extremely low blood sugar for the past several months.  On Thursday morning Cole's blood sugar was 36 but dropped lower to 21, even after juice and crackers.  Dalynn called rescue and Cole got to take an ambulance trip to CHKD.  I arrived shortly after they did (I had to stay behind to make sure Logan and Ava were situated).  Thank God that Gary had come to help us paint.  He always seems to be here when we need him.  He's a good Granddaddy!

Thursday we spent most of the day going through test after test.  Cole had an ultrasound of his gall bladder, an echo of his heart and and EEG.  They admitted us in the afternoon and we came up to 8B in room 813.  It has a really nice view and is a very comfortable room.

The basic gist of what's going on is that they ("they" being the doctors) believe that Cole has adrenal suppression brought on by the steroids he takes on a regular basis and a steroidal skin cream called Vanos.  The adrenal gland is responsible for producing cortisol, and cortisol is involved in blood sugar management (among other things).  The belief is that, since his adrenal gland isn't producing enough cortisol it's causing his blood sugars to plummet.

If it is adrenal suppression the fix is to put him on a low dose of another steroid called hydrocortisone.  This will help with cortisol production and will alleviate the problems he's having.

To find out if it really is adrenal suppression they've taken Cole off almost all of his chemo and steroids in hopes of inducing a blood sugar below 40.  When his blood sugar goes below 40, they can run some specialized tests which will confirm or deny the adrenal suppression theory.  So far, his blood sugar has stayed well above 40...

Barring his blood sugar dropping naturally the plan is to introduce a medicine called AHTC which will stress his adrenal gland, causing it to produce as much cortisol as possible.  They'll then take blood and measure the levels.

There is another theory being kicked around.  Dr. Owen came across a case study of a patient with similar problems to what Cole is experiencing that was caused by another of his chemos, 6MP.  It's only one report, but it's something else to consider.  Right now, he's off of 6MP and no blood sugar issues.  We'll see.

While we're here we're going to also take advantage of the situation to see if we can find the reasons for Cole's constant belly pain.  He'll be having an upper and lower scope on Monday to take a peek at his GI tract.  He'll of course be sedated for all of that. 

He'll also be undergoing a head MRI on Tuesday and we're hoping to slide a full body CT in there, too.  The scans will be in order to take a look at the fungal infection in hopes that we can take him off of his voraconazol.  His bilirubin and liver enzymes are way up, and they believe that the voraconazol is the reason.

We're definitely here til Tuesday, so I'll try to keep you informed of any new developments.

JavaScript: Callbacks in Loops

I just finished a mashup that had to be blogged about. I suffered to find this solution, and I wanted to share what I learned with the world.

In the mashup I took a twitter feed and plotted the tweets onto a map based on the location of the tweeter. Let me set the stage.

The Google Map has already been set up and the list of tweets has been obtained. It is now time to plot the tweets onto the map. This will be done within a function called addMarkers. The HTTP Geocoder that Google provides will be doing our geocoding. For more information on this service, see this.

Keep in mind that I'm doing all of this in a Presto Mashlet, and will be calling out to the HTTP Geocoder via a URLProxy call that is undocumented but available for use.

At first blush, the following approach seems appropriate. Here is an excerpt from the addMarkers function:



However, this suffers from a very serious drawback, and that drawback revolves around the scope of the function as it exists on the stack. Remember that you are calling out and receiving an asynchronous response via the callback. There's no telling where this loop will be when a callback returns, but the scope of the function is maintained on the stack until all of the callbacks have been completed.

When a callback returns, the current value of i will be used to index into tweets! Since all of these calls take time, the most common result is that i will actually be out of bounds of tweets. Recall that updating the loop variable is the last operation done in any JavaScript for loop. Once you have looped through all of your indexes you, of necessity, must set i to be out of bounds of tweets. Therefor, i will be equal with tweets.length.

The result is that you pass an undefined object into placeMarker in place of what should have been the tweet.

The next logical step is that you should create a variable to hold the value of i, like this:

var myTweet = i;
...
this.placeMarker(point, tweets[myTweet]);

However, this will fail as well!

The problem here is that myTweet is still within the scope of our addMarkers function. addMarkers will therefor have only one copy of myTweet. Once again, you end up in a situation where the loop will probably finish before any of the callbacks return. The net result this time, however, is slightly different. You will pass in a valid tweet to placeMarkers, but it will be the last tweet in every instance. You'll have the same tweet attached to all of your markers on the map, the last tweet in the list.

So, how do you remove the timing issues? This is where I suffered. I hunted and pecked out half-solutions for quite a while. Finally, I had to start thinking outside of the normal box to come up with a solution.

The whole problem revolves around all of the callbacks returning to a shared scope in the stack, that being the scope of addMarkers. Once you consider it that way, it becomes obvious that providing each callback with its own scope on the stack is what is needed. The way to do that is to have a function fire off the HTTP Geocoder request. The function will get its own spot on the stack and will have its own scope. Let addMarkers maintain the loop and call this function whenever it wants to fire off a request. Pass in the tweets and the desired value of i to be remembered.

Consider the following:

This approach will result in the correct tweet being displayed with the correct marker on the map.

Swingsets and Horse Rides

There is now a gigantic swing set dominating our backyard. Lindsay Johnson was kind enough to find us a swingset on Craig's List which we purchased a couple weeks ago. Last weekend Travis Jones and I went and dismantled it. Today, Eric Johnson and Anthony Watkins helped me "man-beast" it into our backyard.

When I say "dominate", I truly mean it. As you can see in the picture to the right, it pretty much takes up all of the yard. To get by it, you have to go to the extreme left or right of the yard.

When we got it home and started moving it into the yard (a process made a bit perilous when we had to lift the tower over the fence) the boys came rushing out and had to inspect everything. We'd barely gotten it set and the monkey bars on before they were all over it. We didn't even have time to bolt the ladder and slide on before they were using them. Eric just stood there like a true champ making sure the lip of the slide didn't come off the tower platform and dump whoever was going down it on the ground.

Once we started actually bolting things in place, I believe Logan found his true calling. He would go to my toolbox, pull out a single tool, then climb up onto the swing set and start acting like he was using the tool. He'd most often climb up and get right next to me as I bolted some new piece in place. It was really quite cute.

The swing set still needs some work, though. I need to sand it and re-stain it, but it's well worth it. It's a Rainbow and they don't come cheap (unless you buy them used!).

The kids are going to get a lot of use out of it, and Dalynn and I can't wait til we can just start turning them out into the backyard and letting them go play for a few hours.

In other news, we also started Cole on some horse back riding lessons! Horse back riding was recommended by his physical therapist. It will work all of his core muscles and his leg muscles and should help strengthen him. We've really been fighting a lot of weakness and neuropathy, which has been a bit disheartening. I want to see my boy get stronger, not slowly move backwards.

We recently got him some new orthotics which will give him a lot more stability when he runs and walks. We're really hoping that it will help him get stronger. So far, they've worked wonders. The hard part has been finding shoes that they'll fit in! We have to go a size or two larger, and they have to be wide. We found that they'll fit in large Crocs, so we got him a pair of those to fill the gap til we get him some newer shoes.

All in all, things are good, though. We're all doing well and we're acclimating to having one more member in our family. Having three is certainly a whole new kind of circus (hmmm... three ring, maybe?).

I Haven't Forgotten About Y'all!

I know it's been a while since I updated. I just wanted to say that I haven't forgotten this blog or about y'all. It's just been pretty crazy around here for a while, now. Having 3 is nuts!

In way of quick update, all is well in the Rollins household. We are putting in a swing set this weekend for the boys and Ava is sleeping through the night. What more can you ask for?

On the leukemia front, Cole is still in remission, which is awesome and we're coming to grips with some of the side-effects. Still battling constipation and poop issues, though, which is a real bummer. Things on the sleep front are good, and Cole now gets into bed with us most nights early in the AM. That's led to a happier house all around.

Anyways, I'll put up a more in depth post soon!