Saturday, July 20, 2013

GCSF - Round 2

As tends to happen, I spoke too soon.  Keegan's ANC had fallen again when we drew labs yesterday, so we started round 2 of GCSF.  The team wants to give him one more week to see if he will recover, but it seems fairly obvious to us that this is not related to the antifungals anymore.  A plan is supposedly being made in case next Friday's labs show the same results.  No one has told us yet what that plan may be, but as we have been here before, we know what's probably coming.  This could be a sign of either bone marrow failure from the steroids and/or rejection medications, or it could be an early sign that his immune disorder is ramping back up, despite the higher anakinra doses.  Either way, another bone marrow biopsy is likely on the horizon.  (Who knows though?  At this point, Keegan always surprises us, so don't take my word for it until the team makes a decision.  Just putting out there what we have done on previous occasions.)

Other than that, Keegan seems to be doing pretty well outwardly.  He was good in his therapy sessions and is taking to his new home nurse well.  We are hoping to get some swim time in today with my mom's family and enjoy the coming week while we wait on these results.  Thank you for joining us in prayer.  We wait, as always, on the Lord, for only He knows the secrets of our Bug's little body.  Some pictures from the week to round out this little post.

My little Ladybug waiting with me during Keegan's neuropsych testing.

Labs in the Center for Cancer and Blood Disorders on Friday
This picture reminds me of Lily Tomlin's character, Edith Ann.
Big chair, little Keegan.  "And that's the truth!"

My view on my long run by the hospital this morning.
Grateful for every day I run past it and not to it.

Thursday, July 18, 2013

Second time's a charm

Well, let's hope the second time's a charm!
Week 1 of training starts next week.  Yikes!

You may remember that last year I tore my Achilles and was unable to run.  We still managed to be one of the top 25 fundraising teams for Texas Scottish Rite Hospital for Children, where Keegan sees his rheumatologist, Dr. Punaro.  I have signed up as a fundraiser again this year, but they are structuring the pages a little differently it seems.  I will let y'all know when our K's for Keegan team is set up for donations. 

 Thank you to all who responded with interest in K's for Keegan tshirts also.  I placed the order last week, and we should get the initial set soon.  Due to the number that ordered, we were able to score an awesome discount.  I included a few extra of each size, so don't worry if you missed the first round.  If we get more interest, we can place a second order too!

Keegan has had a pretty good week.  He seems to have rebounded a little bit.  His counts were mostly back to his normal (still low but his "normal") last Friday, so we stopped the GCSF injections.  We will draw labs again tomorrow, and we're praying that they have stayed stable.  Yesterday, he completed his evaluation with the neuropsychologist.  She will be able to help us interpret the news from the neurologist of the atrophy seen on Keegan's most recent brain scans.  Obviously, Gray and I are nervous to get her results next week, even though we know what is probably coming.  Knowing doesn't necessarily make it easier to swallow.  As always, we would love for you to join us in prayer for good news on both fronts.  Thank you so much, y'all.  

Let us run with perseverance the race before us, 
fixing our eyes on Jesus, the pioneer and perfector of our faith.
For the joy set before Him, he endured the cross, scorning its shame,
and sat down at the right hand of the throne of God.
Consider Him who endued such opposition from sinners,
so that you will not grow weary and lose heart.
-Hebrews 12:1--3

Monday, July 15, 2013

Audrey's Princess Birthday Party

These pictures are slightly overdue with our subsequent inpatient stay, but they are worth it!  We celebrated Audrey's third birthday at the beginning of June in true princess style, per her request.  She specifically wanted a "Princess and Cinderella party with a bounce house and pink and purple cupcakes."  Done!  She is still talking about it to this day.  Hopefully she'll come up with some new obsessions in the next year, or I'm afraid we'll be having princess themed parties for years to come.  She is our princess though, so I know we will be happy to oblige...especially if every birthday party is as fun as this one was.

*Remember that the video must be viewed from the website, not email.  Thanks!

Tuesday, July 9, 2013

Independence Day & GCSF

Keegan celebrated our country's birthday with a pretty big milestone.  His first swim in over a year!

Hat? Check. Goggles? Check. Rash guard? Check.
Floaties? Check. Flippers? Check.
Let's get this party started!

Our little fish

Sign of a good July 4th party

Yep.  Think he's got it down.

And what made our awesome weekend at home over the holiday even better?
A visit from Teague!  

A little Top Golf on Friday

Practicing his set up

Audrey decided Teague is now called "pirate Uncle Teague".

More balls!

As close to our Boston ducklings as we can get in Texas

Enjoying the last of the cool snap in the weather

I am at a loss of words to explain how refreshing it was to have time to relax and enjoy fun times with our family this week.  It simply meant the world to us.  

We were so at ease and in "weekend mode" that we totally forgot to go into the hospital on Friday morning for Keegan's weekly lab draw!  Luckily, the team allowed us to wait until yesterday to draw them.  I don't know if that was a good or bad thing because we got some disappointing results.  Keegan's white blood cell count and ANC (neutrophils/"baby" white blood cells) had tanked dramatically.  Even on the anakinra, Keegan continues to have a low WBC and ANC, but this was dangerously low.  It means he is even more immune-suppressed and has even less ability to fight off infection.  We rechecked the numbers again today, and they were the same.  So, we are on much stricter "house arrest" right now, and we had to restart a medication called GCSF that is given as a shot.  We will check the levels again on Thursday to see where we stand.  This is not the first time we have seen this from Keegan, but we were a little surprised to see it now.  

So as always, your prayers are greatly appreciated for our Bug.  We would love to see more fun times like we had this weekend the rest of the summer, but we need him to stay stable in order to have more adventures!

(By the way, I realized while editing these photos that I never posted pictures of Audrey's birthday party!  Oops.  Better get on that...)