Cycling & Tri Kits

It's LIVE!  Ks for Keegan cycling jerseys and tri kits are available now!

10% of proceeds will benefit Keegan's trust with COTA.

Check it out!  We appreciate your support.

http://www.rocketsciencesports.com/team-portals/ksforkeegan.html

Dallas Marathon Ks for Keegan Relay Teams

BIG NEWS!!

We are adding a new option for Ks for Keegan RELAY TEAMS for the Dallas Marathon on December 13, 2015!!  The Dallas Marathon benefits one of Keegan's favorite hospitals, Texas Scottish Rite Hospital for Children which treats his immune disorder.

Each team is made up of 5 runners/walkers who each run/walk one leg of the relay ranging from 4.25 to 6.25 miles, and together, you finish an entire 26.2 miles!  For ease of communication, I have created an event page on Facebook to manage the teams.  If you are not a personal friend on Facebook and are interested in joining us, please comment below.  I will send you an invite to the event page that way.  

This is not our last Ks for Keegan event of the year, by any means.  It just is going to take some more organization and time to register all the different teams.  Stay tuned for more info!

Ks for Keegan - Second Chance 5K

It's only one month until the next Team Ks for Keegan event of 2015.  Woot woot!

Join us at the Second Chance Run in Fort Worth on MAY 16.

We are so happy that Donate Life has finally brought this race to North Texas.

The mission of Team Ks for Keegan is to spread organ donation awareness and support the bravery of donors and recipients.  We can't wait to show up in force and sincerely hope you'll join us.

Register at http://www.2ndchancerun.org/

There is a 5K option with team registration (select KsforKeegan from the drop down menu) for $18.

There is no discount code for this race, but the price does go up in 2 weeks.

If you would prefer the 1 mile option, there is no "team" registration option.

Just select 1 mile individual, and show up on race morning in your Ks for K shirt!

IF YOU ARE DOING THE 1 MILE, please let me know in comments or via email because you will NOT be listed with our team on the registration site.  I will need to add you to any team communications manually.

If you still need a Ks for Keegan shirt, let me know your size before May 1.

Cotton shirts are $13.  Tech shirts are $22.

See you at the start line!

Firefly Run 2015

Come join us for the first team event of 2015 at the FIREFLY RUN!

Saturday, March 28, 2015

7pm

Campus at Legacy (Hedgcoxe & Legacy)

We had an awesome turnout last year, and we'd love to have a BIGGER team this year!

Team tshirts are available if you let me know by Monday, March 23.

Cotton $13.  Tech $13.

Register at http://fireflyrun.com/locations/dallas-2015/

Choose team registration; select team name Ks for Keegan from the drop down menu.

Password is also ksforkeegan.

DISCOUNT CODE: FFRMAI3U02N

More races coming this year!  Keep watching for updates!

Make-A-Wish trip, K's for Keegan, & other tidbits

Hello again!

I want to start out by giving a heartfelt "thank you" to everyone who supported our decision to sign off of the blog on a regular basis.  It's been nice to have some time to ourselves without worrying about maintaining these updates.  As promised, we will be sure to post when there is news that needs sharing, and thus, I have a few tidbits and housekeeping issues to address.

Best news first: Keegan successfully made it through his Make-A-Wish trip to Disney World in September!  It was a fantastic trip for all of us.  Keegan struggled a lot with the break in his routine.  Most of each day was not happy ones for him, but there was a moment each day that made it all worthwhile.  On our first day at the Magic Kingdom, he and Audrey had a private audience with Elsa and Anna.  He was scripting from the movie, and the princesses played right along with him.  Our chatterbox, Audrey, was utterly speechless and in awe.

On Tuesday of our weeklong trip, we visited Hollywood Studios, and Keegan was able to meet Lightning McQueen.  It was one of the few times he was quiet and not internally scripting for comfort.  He just ran his hands over the car slowly, taking it all in.  I adore this picture!

Wednesday was the one day he was happiest - at the beach.  We managed to wait out the rain, and his only meltdown of the day was when we had to leave.  Can't blame him there.

Thursday, we visited Epcot and met a LOT of princesses.  Keegan did much better with the "face characters" (like princesses, Mary Poppins, Peter Pan, etc) than with the costumed characters (Mickey, Donald, etc), so this day was a little less stressful for him, even though we had a lot of ground to cover.  It was also the soft opening of the Food & Wine Festival, which made the day easier for the adults.  Ha!

Friday was Keegan's seventh heart transplant anniversary, and what a day it was!  We started out with a character breakfast at Ohana.  This breakfast featured Lilo & Stitch, two of his favorite characters.  We think he identifies most strongly with characters that don't speak clearly, like Stitch and Chip & Dale, since Keegan doesn't either.  As the rest of the week had gone, he was overwhelmed by Mickey, Lilo, & Stitch in their costumes.  When he is scripting internally for comfort, it is rarely understandable.  Near the end of the meal, Pluto came by our table.  Keegan was scripting something we couldn't identify, but all of a sudden, he said "now sit!", pointing to Pluto.  Gray realized he was scripting from a classic Chip & Dale episode with Donald and Pluto.  The person playing Pluto must have heard it.  And sat!!  Keegan looked intensely at him and said, "lay down!"  Pluto did.  Keegan started jumping up and down with excitement.  "Roll over!"  "Now, sic'em!"  God bless the actor playing Pluto because he went through this charade two more times to Keegan's delight.  That moment alone was worth the whole trip!

Later in the day, the photographers at Disney World in the Magic Kingdom made one of our biggest wishes come true.  A private photo session with Keegan and a set of ears we had made in honor of Johnston, Keegan's donor.  I think the pictures are worth more than words here.  Without Johnston, this trip, this life, would not be a reality.  He is with us every moment of every day.

Since the trip, Keegan has managed to make it to one whole year outpatient!  That's only happened one other time in the last 7 years.  As nice as it is, sometimes it gives you a false sense of stability.  Things are pretty much going well though.  We are waiting on an appointment with the new neurology group with baited breath.  Keegan has begun showing some regression of his short-term memory, and we are anxious to meet with the neurologist to discuss how we can help slow the dementia process or at least make it easier for him.  We have also been having difficulty controlling Keegan's blood pressure.  He is back on his old doses of hypertension medications, but his numbers are not where we would like them.  He has had a few more episodes of massive swings between high and low with no explanation of that either.  We were hoping to avoid a heart cath in January, but it looks like we will likely not be able to this time.  Cardiology is pointing the finger at his kidney function, but that remains to be seen at this time.  Either way, prolonged hypertension will harm his graft (donated heart) and his kidney further, so it is an issue we are aggressively watching.

One little update on K's for Keegan:  Our last race of the year will be at the North Texas Turkey Trot in Frisco on Thanksgiving morning.  This race benefits the Miracle League of Frisco, a sports league for kids with special and medical needs with whom Keegan plays soccer, baseball, and track.  Fall track focuses on increasing endurance and culminates in the athletes walking or running in the Miracle Mile or 5K at Turkey Trot.  There is no team registration option for this race, but we will be wearing our K's for Keegan shirts, weather permitting, and will meet up before the race at the northwest corner of the AMC movie theater.  Please comment below or email me for more information!  I will also be running the Dallas Marathon for Texas Scottish Rite Hospital for Children, where Keegan sees his rheumatologist, on December 14.  If anyone is running the full or half and wants to meet up and wear a K's for Keegan shirt, I'd love to see you there!

Last bit of housekeeping - we have deleted the email account for this blog after some spam problems and a false Facebook account being set up with it.  If you don't have an email contact for me or Gray, you can always comment below a post, and we will get in touch with you.  

Whew, I think that's all for now!  Hope everyone is staying warm in this weather.  Have a great holiday season!  

Overdue update and signing off

Another unfulfilled promise to update this little blog.  At least no posts means no necessarily bad news to report.  Keegan has been stable over the summer, and we've done our best to keep him that way.  There isn't a lot going on with him medically that is concrete enough that I felt I needed to record it here, which is good and not entirely good.  There have been milestones and hiccups, but he has stayed home through it all.  Hang onto your hat; it's gonna be a long one.  Here's the scoop:

• Keegan is OFF steroids!  Yep, you read that correctly.  It was the longest, slowest, two-steps-forward-one-step-back steroid wean in history, but it finally paid off.  Keegan has been off steroids successfully for an entire month with no flares or major side effects.  He hasn't had any viral exposure to test this theory really in the last month, but so far, so good.
• Without steroids, Keegan's intestinal failure has worsened.  This was expected but still difficult to see.  The intestinal failure is caused by his immune system attacking his GI tract as part of his underlying (and yet still unidentified) global autoimmune disorder.  We knew that the anakinra wasn't helping this one aspect of the disease, but it works for keeping the big, life-threatening flares away.  The intestinal failure is manageable with TPN and IV supplementation, so it's not as much of a priority.  We haven't jumped the gun to add more TPN on yet, but it will happen soon. 
• Since the steroids came off, his anemia and neutropenia have made a slight comeback.  It's too early to say if this is related to the steroids.  It's not actionable yet, just something to watch.
• For the first time, the chronically hypertensive child who has been on no less than three blood pressure medications his entire life has been fighting with fluctuating blood pressures.  It happened once at the beginning of the summer, but he quickly went back to his "normal" high numbers.  Then two weeks ago, his blood pressure tanked again.  Instead of running to the ER, we started his TPN immediately at a higher rate to get some fluid on him and held his blood pressure medications.  He seemed stable enough to stay home, and a quick visit to the transplant clinic didn't show anything immediately concerning.  So for now, he's still off the medications.  He is making a much slower return to his higher numbers, and I anticipate we will be back on his blood pressure medications before long.  This could be a result of the steroids being off, or it could be Keegan keeping us on our toes.  Another thing we will have to wait and watch.
• We are waiting on a bone density scan in the coming weeks to make sure there is no permanent bone damage from the years of steroids.  Keegan has not grown more than 2cm in the last several years, which we attributed to the steroids also.  If we don't see more growth in the next 4 to 6 months, we will see an endocrinologist to determine if we need to help Keegan's body along.
• Still no results from Keegan's genetic mapping back yet.  His rheumatologist was meeting with the researchers last week, and we are hopeful that the results will be done soon.

All in all, Keegan has been stable at home and enjoying summer.  We've had a few fun family outings around town and have been swimming once about every other week.  Although the medical team wouldn't endorse swimming with a central line, we made the decision to allow Keegan to do so after careful research.  We only swim in my parents' pool; we cover his line as best as possible and do a dressing change immediately after he gets out.  I wouldn't say that we can call it completely safe after the limited amount of swimming we have done, but (knock on wood) he's done well with it so far.  A little bit of normalcy where we can get it.

The last major point to update is Keegan's neurological status.  At the end of the school year, Keegan's teacher and ABA therapist both independently approached us about his apparent inability to make any gains in more abstract areas of thought, anything he couldn't memorize.  This was a red flag we had been told to look out for by neurology.  With this information and the end of the steroids, we met with neurology to determine the next step.  We ultimately decided not to do another MRI at this time.  He is not having any more strokes or seizure activity, so new films would only give us another baseline to determine the rate of aging/decline/gliosis/whatever-we're-calling-it.  It wouldn't change our treatment of him at this time.  Instead, Keegan's being referred to a new neurologist specializing in this area.  

I guess this is a good time to reiterate that Keegan's medical history, disease history, strokes, and medications have left him with a brain that has "dried up" and was two years ago, roughly similar to that of a 65 year old.  The worst damage is not in an area of the brain where Alzheimer's usually occurs, but rather, we must watch for signs of early onset dementia in a child who never reached normal development in the first place.  If you can imagine learning the subtle signs of dementia and stroke activity in a normal 65 year old, imagine the difficulty in determining these signs in a child who never spoke or acted "normally" in his 6 years.  This new neurologist will hopefully be able to help us distinguish between existing damage and the signs of dementia that his teachers and therapists (and family) may not initially see.  We believe she will be able to help us determine when it's time to start various neurological/dementia medications that may help Keegan cope over time.  I won't even try to explain how difficult the idea of watching your child go through dementia before he's a teenager is to swallow.  However, the good thing is that we are surrounded by doctors, friends, therapists, and family that are committed to helping him (and us) through it.

In contrast to essentially every post over the last year, I will not wrap this up by promising any new posts in the immediate future or apologizing for a lack of posts.  It has taken me about a year to admit that I don't want to update the blog anymore.  Gray and I have made a commitment to actively pursue quality in Keegan's life, as there is no guarantee of it's quantity.  It may seem counterintuitive, but Keegan's stability has made us much more acutely aware of how limited our time with him may be - whether it is chronological time or neurological time.  That means that we are actively committing to living a more authentic, unplugged life with our children.  I want my kids to know that I am living each day with them and for them, not to have something to post on the blog or Twitter or Facebook.  Additionally, the changes in Keegan's health and overall condition have been more subtle over the past year, making it more difficult to put into writing.  

So where does that leave us?  We'll still be here.  There probably won't be much over there on the Twitter feed.  In fact, that will likely go away soon.  K's for Keegan is still alive and well.  The next race will be the Turkey Trot in Frisco on Thanksgiving Day, which I will relay more information about soon.  Every one of my own races is a K's for Keegan race, but my race season has taken a hiatus this summer as I dealt with some personal health issues.  This blog was never about me in the first place though.  When the posts do come from here on out, they won't be about anything but Keegan anymore.  

To that end, there won't be many posts here, but I'm not shutting it down.  If there's something important to note because Keegan's struggling or he's inpatient (or oh-my-word, he's at Disney World on his second attempt at a Make-A-Wish trip!), I will come back.  In between that, the day-to-day pictures and life updates will stop.  No news is not bad news.  We are so grateful for the continued support, love, and prayers that everyone has given Keegan and our family over the years, that I couldn't possibly retreat into our shell for good.  I am a firm believer in the power of prayer and intercession.  I would never take that blessing out of Keegan's life voluntarily.  It's just time for our family to be our family.  To disconnect for awhile and make the memories that we will need one day when our family isn't four anymore.  No one can tell us how long that can be, so we're going to make the most of it.  I wish we were stepping away because things were just so peachy keen we didn't need to update anymore.  Maybe I'll regret stepping away 10 years from now when things are exactly the same as they are now, but for now, this is where we, as a family, need to be.  

So, thank you again.  And please don't give up on us.  We'll be back soon.  

Audrey's Frozen 4th birthday party

Audrey turned 4 years old!  Thirty-eight days ago, but who's counting?  She had a fabulous time with her friends at her Frozen birthday party.  To be specific, it was an Elsa party because other than the Olaf pinata, only Elsa was allowed to be anywhere near the party decorations!

Audrey had three requirements for her party: Elsa, a bounce house, and a pinata.  We had it at a local playground, so there was endless entertainment for the kids and minimal clean-up required on my end.  Winner, winner.  I find it hard to believe Audrey is already four years old.  She is a chatty Cathy, but it's so fun to hear her opine about things.  She keeps us laughing every day and takes great care of her big brother.  She is a great mix of girly and sporty.  Loves her princesses but isn't really into dressing up or glittery things.  She's just as happy in a dress or cleats.  Ballet shoes and baseball uniform.  She's a pretty happy and easy-going gal, unless she's set her mind on something, in which case she can be pretty stubborn.  Happy birthday, Queen-Elsa-Audrey (her self-appointed name)!  We love you to the moon and back.  

Buck-A-Jeans & Make-A-Wish

Only phrases connected by dashes are allowed in this post's title evidently.

Whoopsies.  I know I said I wouldn't apologize any more for a lack in updates, but that was a pretty long break.  To my credit, May was a simply crazy month.  Mostly crazy good, and for that we are very, very thankful!  Still, it didn't leave much energy or brain power left for me by the end of the day to do blog posts.  Or edit pictures.  Or even pull pictures off the camera.  Or answer my email for that matter.  Hopefully, things will slow down soon with summer break coming.

To kick this blog back into gear, I'll start with our two biggest blessings in the last week.  Buck-A-Jeans day at Audrey's school to raise money for Keegan's COTA account and the return of Keegan's Make-A-Wish trip this fall!

Last Friday was Audrey's last day of 3K.  (Eek!)  While she wears a uniform to school most of the time, her school will occasionally host a Buck-A-Jeans day on Friday where the kids may wear jeans and a school spirit tshirt if they bring a dollar to donate to a chosen cause or fundraiser.  We were extremely honored to be contacted last week and asked if the school could host the last Buck-A-Jeans for Keegan and as a way to spread organ donation awareness.  Since it happened to be the same day as eighth grade graduation, I didn't make it into the upper school to see how many kids were in jeans, but Keegan and I visited the preschool to thank the kids.  Of course, they just think it is cool to wear jeans to school for a change, but it was much cooler to us to see how many kids were supporting our family in this way.  I haven't heard how much was collected or if it will be donated to COTA, Children's, or Donate Life in Keegan's honor.  We truly couldn't be more grateful to know the POP community has lifted Keegan, who isn't even a student there, up in this way, and we are looking forward to watching Audrey grow as she continues her education and spiritual formation there.

Audrey's 3K class and Keegan on Buck-A-Jeans day

The second big piece of news is the beginning of preparations to once more attempt Keegan's Make-A-Wish trip to Disney World!  We're looking to go in September in the week between his birthday and transplant anniversary.  We tried to make the trip back in April 2012 when we didn't have his immune disorder well controlled and were awaiting a decision on whether or not to proceed with a bone marrow transplant.  Ultimately, Keegan was not ready for such a big trip.  He had a macrophage activation flare the very first night we landed in Orlando and had to be medically air-lifted back home immediately.  Make-A-Wish is going to let him try again, and we will get the chance to stay at Give Kids the World again also.  

The only difference this time is that he will not be given the per diem allowance for incidentals/meals/souvenirs/whatnot.  By the time Keegan was discharged home in 2012 from that inpatient stay, the per diem check had been mixed with our personal checking account for a few weeks, and we weren't exactly in a financial position to go cutting a big check back to Make-A-Wish.  So this time, that all falls on us.  In order to help make Keegan's every wish come true at Disney, my friend's online boutique is hosting a fundraiser specifically to replace his lost per diem allowance.  She is selling the most awesome beach towels just in time for summer!  Everything from Frozen to Spiderman, and you can have them personalized too.  

So head on over to Kahuna Keegan's Beach Cabana!  We are so excited that Keegan will get a second chance at his wish trip, and thank each of you from the bottom of our hearts for helping him have the trip of a lifetime.  I'm dreaming of the smiles from both of my kids already!

I promise an influx of posts recapping the last few months and with a medical update soon.  Keegan had a small surgery today, round 59 of general anesthesia.  I promise more about all that soon.  For today, we just want to express our heartfelt thanks for the blessings in our lives.  Thank you!

Firefly Run awesomeness!

So almost a month ago (eek!), we had an AMAZING turn-out for K's for Keegan at the Firefly Run.  I mean, seriously y'all, look at this!

We had family, friends from every part of our lives, Gray's coworkers, the kids' pediatrician's office, and Keegan's home healthcare company.  We were so honored by the number of people that came out to support Keegan and Children's this year, and honestly, I cannot WAIT to see how much bigger it can be next year.  Truly, I ran the entire thing on cloud nine.  

My friend, Kelly, from high school has been one of K's for Keegan's most loyal supporters.

She rocks. ;)

This kid had so much fun, that he wanted no part of going home that night.  Thank you so much to everyone who came out.  I'm diligently looking for another race we can have a large presence at, but you can count on us being out in force for next year's Firefly!

Bullet dodged

I still need to update about the Firefly Run, end of both kids' spring soccer seasons, and Easter.  Hopefully, I can tackle each one per night this week to get caught up.  If you happen to follow Keegan via Twitter or FB, you may have noticed that we dodged another line infection bullet last week.  You know, just to keep us on our toes.

On Monday night right before starting to cook dinner, I was putting some things away in the garage and taking out trash.  The kids were watching a movie in the den, and I left the back door open to keep an ear out for them during the few minutes they were out of my sight.  It was less than 10 minutes of sweeping, tidying, and garbage duties and yet evidently still too long to leave Keegan alone with his TPN pump running.  I came in to see him standing in a small pool of blood saying he needed "a wipe".  I saw the blood in his line first, clamped the line, disconnected the pump, and carried him to the bathroom to get cleaned up.  Then, I started finding the wreckage.  Blood saturating my couch (which although is luckily red, still did not come out), on the rug, on the tile, on the leather chair, on his clothes...and around his mouth.  Once again, he had chewed through the line, and as soon as his venous pressure exceeded the pump rate, he started to bleed out.  With blood, it always, always looks worse than it is, and although I've been through this too many times, I still got a little freaked out.

My mom rushed over to take care of Audrey and help the clean up while I sped across the street to the Legacy ER.  Obviously, one concern was how much blood had been lost.  Answer?  Not enough to be concerning.  The biggest concern was whether any bacteria from his mouth had been pumped IN to him before he started to bleed.  So we ran labs, drew blood cultures from the line, and waited on pins and needles for 5 days to see if they would grow anything.  If at any point, day or night all the way until 7pm on the night before Easter, the cultures grew any bugs, it would mean an immediate hospital admission for IV antibiotics and possibly surgery for a new line.  Luckily, that didn't happen, and so far, so good.  He has shown no signs of an adverse reaction to the incident, and we enjoyed a normal Easter together as a family for the first time since 2010.

The big question is what drove him to chew again.  If you recall, he did this in the middle of the night last summer, which is why his pump now runs during the day.  That resulted in a fungal infection that dropped him like a rock and took two weeks and three trips to the OR to get a new line.  We assumed last summer that it was because he woke in the middle of the night and was bored.  Perhaps it was boredom again this time.  We will never know.  Even when his nurse is here, we can't keep eyes on him 24 hours a day.  There will always be a few minutes here and there he could sneak it in his mouth, and he isn't capable of understanding why that's a bad thing.  For now, we are grateful that God was keeping a watchful eye on Keegan, even if I wasn't.  Thank you for continuing to lift him up in prayer, and if you don't mind, a few extra wouldn't hurt until we are truly out of the woods here.  Whew! One more day with Keegan, one more bullet dodged.  Let's just hope we continue to be this lucky!

p.s. Keegan's cultures from the previous ER trip came back positive for a respiratory illness called metapneumovirus.  Evidently, Audrey was misdiagnosed!  It was still a virus, so supporting his symptoms was all we could do.  However, we will say that was also a bullet dodged, as this particular virus can be difficult on immune compromised kids.  Boy, Keegan's guardian angel is working over time lately!