Sunday, May 27, 2018

All kinds of updates...

David here...

On our last post, we didn't have time to do this event justice, so we saved it until we had a few more minutes to write about it.  We were blessed by an overwhelmingly gracious fundraiser some friends (and new friends) did on our behalf.  This group of high school friends began getting together for Houston Astros' opening day a few years back.  As years went on, their opening day group continually grew.  Eventually, this great group of people decided to make a fundraiser out of it and the last two years they have decided to make that fundraiser in support of a specific family.  By the grace of God, they decided this year to choose our family to be the recipient of their generosity.  We were blown away and humbled by the willingness of these kind people to be used by God to bless our family in a manner that we would have never expected.  Thank you so much to everyone who showed up to the opening day Astros game and fundraiser!!!  We are so grateful!!!

Last weekend, we had the opportunity to attend the annual Triumph Over Kid Cancer (TOKC) golf tournament and Toga party in Corpus Christi.  Last year, Andrew was asked by this organization to be James' "Wingman."  For those who are unaware, James Regan started TOKC when he was diagnosed with Sarcoma at the age of 12.  He battled cancer for 9 years before he won the battle and left this earth for his heavenly home.  Every year since then, TOKC has chosen a child also battling cancer to be James' "Wingman."  This year, we headed back to Corpus Christi to support the event and be a presence and voice for the organization in whatever capacity we were able to (which means I let Kristi do all the talking).  The kids had a blast, enjoyed some fun time on the beach, and Grace danced the night away from 8pm-1am (if you ever need someone to help get a dance party started, we will rent Grace to you).  Andrew impressed us all with the confidence he exuded as he walked around the party all night (totally independently, we didn't know where he was most of the time) acting as a true ambassador.  We would find him talking to people he knows and many he doesn't know about his journey with cancer or just life in general.  We couldn't have been more proud of him!

Andrew kicked off the Golf Tournament by hitting the first ball!

Andrew getting some pointers from a pro, 

 VIP party

Andrew was proud of his creation, Meatball Man...  he got to share his vision for Meatball Man with the Oscar Award winning director (and super nice guy with a huge heart), Andy Sacks :-)

Sweet Anna was James' oncology nurse and the reason we were connected with TOKC!

Some beach fun!

Corpus has this brilliant program where they provide bags so you can pick up litter along the beach. Abby and I actually had some serious fun cleaning up the beach!

Toga Party fun!

Post Toga Party (this is in the hotel lobby at 1:30 am)!

Check out this awesome doll house my Father in Love made for the silent auction!

And just like that, the Spring season comes to an end for both Andrew's first flag football season and Abigail's soccer season (although soccer never really ends because Abby still has tournaments throughout the Summer and will continue to attend any soccer training available).  Andrew has enjoyed playing football for the first time, but at the same time he is glad it is almost done and it doesn't sound like he is all too eager to play again anytime soon (glad we checked that box).  Abigail's first year playing with the Houston Dash has been great!  Her team finished first place in the top division in both the Fall and Spring seasons.  At this point, she still loves soccer and will play any chance she can get.  It has been great getting to know some new families this year and build new friendships on the sidelines.

Grace has been taking ballet and tap this Spring and her end of the year dance recital is coming up next week.  She loves going to dance each week!  She listens well, has a joyful attitude, and has grown so much in her abilities.  We are amazed at what she is able to accomplish and grateful she will be able to actually participate in the recital this year.  Just think, last year around this time Grace was in the hospital for a week leading up to her sixth open heart surgery at the end of May of 2017.

This is what you get at dress rehearsal when you tell Grace to pose...

Kristi here...

And... as football and soccer wind down (well, not soccer really), both Andrew and Abigail are doing Summer swim team again.  In the past month, Abigail has probably made it to a total of 2 or 3 swim practices (out of probably 20 or more) because of soccer, so she is content knowing that swim is just for fun and not "her sport" (this is big for her because you know she is a highly motivated, super passionate, and competitive kid).  She has even really embraced the fact that it's actually a great thing that this is one sport that Andrew is better at than her because it builds his confidence (getting smoked by your sister all the time isn't always fun ;-).  Andrew isn't the fastest or slowest on his team, he is right in the middle and, to be honest, regardless of what he does in that pool, every time he races, deep down I'm screaming "Boom....  you crushed that race, nobody else in that pool is battling the hell out of stage 4 cancer!", but of course those are inside thoughts, I would never say that out loud... writing doesn't count and y'all know my heart, right? :-)

Andrew and I got to go on a Mother/Son date which was, in Andrew's words "his best night ever!"  Which in turn makes it my best night too!!! He was such a gentleman and seeing him dance his heart out with me and with his friends was more than my heart could handle!

My handsome date!

Grateful a friend caught this special moment!

We are sweaty, but with full hearts!

Abigail had her 5th grade performance this week.  We can't believe it is her last elementary school performance! We were so proud of her for doing such a great job despite the fact she was not happy about having to wear a big bow and use pom-poms.  That sporty girl does have some pretty good moves :-).

Grace had a big first...  she lost her first tooth!!!  She was so excited for the Tooth Fairy to come and bring her a coin like Peppa Pig got when she lost a tooth ;-)

We celebrated Abigail's birthday on Thursday!  She is 11 going on 31 because she is such a wise old soul.  She is our tender-hearted, soccer loving, loyal, selfless, fierce, oh so generous, hard working, thoughtful, passionate, and most importantly God loving and fearing little angel!

Celebrating this sweetie on her birthday and this is what you get when you ask David to take a picture!

Andrew got Abby a new soccer ball!

 When Abby was 2 years old she started a tradition of getting her Bubba something for her birthday because when we asked her what she wanted for her birthday, all she would say is to get Andrew something.  We agreed to letting her get Andrew something just so she would tell us what she wanted... it's been a tradition ever since.

She got Andrew a quill (like in Harry Potter)...  his face explains it all!

***Update on Andrew-  since his last PRRT treatment in early March, Andrew's pain has been very well controlled, to the point that we have even started cutting back on some of his 8 pain meds which had been very exciting.  We ditched one pain med all together and have been slowly weaning him down on one of the opioids.  This small adjustment in pain meds has allowed us to see glimpses of the Andrew we know (prior to being on heavy duty pain meds around the clock) and to say that it has been a giant blessing is an understatement.  It has been very odd that the terrible awful pain hadn't appeared on the scene yet (following the pattern it has after previous treatments), so I began getting hopeful that maybe the pain would somehow go away and stay away (although, in the back of my head I knew it was more than likely right around the corner).  Over the past two and a half months, I have grown to love and appreciate the absence of any break-through pain... I had forgotten what it's like to have a life that resembles a little teeny tiny bit of "normalcy" (not having a clear and present reminder daily that your kids body is full of tumors), but that little vacation has come to an abrupt halt over the past couple weeks as we have seen the pain make it's presence known.  One praise is that, so far, it hasn't been the terrible awful pain that has made him throw up, but it is bad enough to make him miserable.

We spent the day yesterday at the soccer field ALL DAY and it was humid and HOOOOOTTTTT!!!  Andrew and Grace went to the morning game and then went to David's parents house for the rest of the day so they could cool off in the pool, etc (since both of them can get overheated pretty easy).  We intended to go to dinner on our way home from the tournament, however, I could tell Andrew was probably experiencing some pain based on his pink cheeks and the way he was sitting.  When the pain gets really bad, he can't eat anything, so I thought I was being creative when I asked him if he would eat if we stopped for dinner (since I knew if I asked him if his tummy hurt, he would say just a little, but not bad), so I was surprised when he said yes he would and that he wanted to stop and sit down to eat.  It wasn't long after we were seated and started playing some of the games on his kids menu that I new where we were headed...  he was trying so hard not to show anyone that he was in a lot of pain because he never wants us to not do something because of him.  I hate going out to eat when he's in pain because I can't enjoy myself knowing he is miserable (we have left many restaurants before ordering or boxed our food up and took it home because we want him to be comfortable in his bed, not having to lay on my lap or with his head on the table in pain).  His food came and of course he couldn't touch it by then because the pain was so bad, so we went and sat in the car, so he could try to fall asleep.  My heart was crushed in a million pieces because the weight of my baby having stage 4 cancer hit me like a ton of bricks.  I've been learning how to carry those bricks daily (the giant tower of bricks always feels off balance, like the stack of bricks could come crashing down at any moment... sort of like the game jenga).  On the hour drive home I held back tears as I contemplated and experienced the exhaustion, brokenness, and frustration about the fact that nothing in our life ever goes the "easy way".  In addition to all that comes with having a child with stage 4 cancer....  For Abigail, I feel like she is so often the underdog (always having to prove herself being so small, etc),  Grace's INR (blood thinner levels) has been way off (too low, which puts her at risk for a stroke) for no good reason, we've been in the thick of preparing for and having her ARD meeting (which are always a reminder of your kiddos deficits... and strengths of course, but plain and simple, it's a reminder as a special needs parent that your journey is far from "normal" and you always have to be on your toes), and with the busyness of our life/circus, David and I could be doing a better job of feeding our marriage.  I fought back tears on the drive home because I try to be cautious about when I allow myself to break down in front of the kids (they absolutely see me cry and we sometimes have a good cry together, but I try to be prayerful about when and how often I let them experience that because I'm very aware as to how much my emotions impact them).  When I got home I grabbed the dog (since she had been in the house all day and needed to get out too) and went for a walk where I had a good cry and listened to worship music.  I came home feeling much better and ready to get back on the battlefield, but still physically, emotionally, and spiritually exhausted.  As God and I wrestled about why it has to be so hard, I asked Him to speak to me clearly, helping me to see His hand.  Just as our faithful Father always does, He did just that this morning at church.  He revealed to me that I have allowed fear to have a stronghold on me despite the fact that I know better and I didn't even realize that fear, like cockroaches, were hiding in the dark crevices of my life (yuck.... I hate that analogy I just went with because I despise cockroaches, but then again I despise fear too, so we will stick with it).  Like the song we sang at church this morning, fear is a liar!!!  It takes our breath away and stops us in our steps...  I can't tell you how many times my breath is literally knocked out of me and I keep from falling to my knees because fear is one of our enemies favorite weapons in his attempts to kill and destroy us (thats what the Bible says Satan's mission is).  I don't understand why our life has to be so messy, but what I do know is that God knows.... our suffering is not in vein, His perfect will is somehow being accomplished through it all and while I may not always understand it, I can trust His heart.  When I put into perspective how big our God is and how much He loves us, it makes our earthly problems so much more managable and I'm freed up to experience joy in the suffering.  One of the many ways He covers us with His grace is by sending faithful troops to come alongside of us and speak into our lives.  I made a Facebook post last night asking for prayer and so many of you responded with words of encouragement and commitments to cover us in prayer (although I trust and know that so many of you pray daily for our family, which I can't thank you enough for).  I fell asleep shortly after posting that message, so I woke up to your comments, which caused me to weep as I read them because I didn't even really know how much I needed y'all in that moment.  Then, at church we were encouraged to let the Spirit lead in terms of what He wanted to say to us (whether it was meant for us or a nudge to encourage someone else).  During this time David and I were standing up and along the wall as part of the prayer ministry (for anyone needing prayer), which left Abby sitting by herself in her seat (Andrew and Grace were both in children's ministry).  I knew Abby would be fine sitting there by herself, however the Lord led some sweet ladies to one at a time walk over and talk to and pray for her.  This picture served as a powerful reminder that God never leaves us alone (even though this journey can sometimes feel lonely because your life looks so different than most, not because people aren't around.... in fact we have the best support system EVER).  Then, there are the words that some shared with us or prayed over us...  all of this (and more) God used to set our feet back on solid ground and get back on the battlefield.

***Prayer requests-  will you please pray that Andrew's pain won't get any worse (in intensity and frequency) and above all that his scans on June 12th (we won't get the results until our appointment on June 13th) will reveal nothing but GREAT news (no progression what so ever, and lots of regression and dead cancer)?  Grace has an echo this Friday, will you please pray that her heart looks super happy (no concerns what so ever)? And above all, that God would get all the glory!

THANK YOU, THANK YOU, THANK YOU for the ways in which you come along side of us!!!

Here is a nugget I took away from todays sermon at church...  I encourage each of you to join me in praying this for yourself "Lord, let me know more about you, believe everything I know, and let me live like it's true."

Monday, April 30, 2018

Last week's whirlwind...

I believe this post is well overdue and I have the time to write it as I (David) am sitting in the hospital with Andrew (at least, I began this post while in the hospital with Andrew last week).  On Sunday and Monday last week, Andrew had been rather lethargic and woozy. On Sunday, Andrew woke up in terrible stomach pain, so we gave him his pain medicine and then let him fall back asleep. He slept from 8:00 am - 4:00 pm. We woke him up to take him with us to Life Group at church, but right when we got home he was ready for bed again (he was asleep by 8:30 pm). On Monday, Andrew woke up to go to school and was really tired, but he is always really tired before school, so that wasn’t out of the ordinary. We received a call from the school nurse at 9:30 am when Andrew went to get his medicine and she stated that he was extremely tired and acting a little different. We picked him up and took him to the pediatrician and she tested him for strep and commented as well on how different he was acting. She also took his pulse ox, which was around 91-92% and then the nurse came in to confirm that he was very positive for strep. The doctor stated she would like Andrew to go to Texas Children’s Hospital for the doctors to due some lab work and imaging. She was so concerned with how he looked that she called the ambulance to transport him.

This is how Andrew spent ALL day Sunday!

We got to TCH and Andrew got to go through FastPass to get a bed in the ER (one of the few bonuses to having a kid with a major illness... we have two kids that get fast passed in the ER). He gets poked a couple times before they land the IV (they ended up having to call the VAT team to place the line.... thats the team they call when they can't get a line started), has a head CT completed, and then a chest X-ray.  They were concerned with how lethargic he was, but based on lab results and head CT, they were prepared to send him home and let him ride it out at home, which would have been fine by us. However, after they shared that they would get paperwork ready to discharge, they then returned to state his chest X-ray came back and Andrew had a severe case of pneumonia, which is crazy because he wasn’t showing any major signs of pneumonia (other than being lethargic).  Kristi had given me specific instructions as to what she wanted them to test for and 2 out of her 3 main concerns were done automatically (I didn't even need to request it), but they didn't see a need for the third thing which was a chest x-ray at the time because he didn't have any pneumonia like symptoms (Kristi just had a gut feeling thats what it was), however when I expressed concern about his lower than normal oxygen levels they agreed a chest x-ray made sense just to be safe.  Due to Andrew's extreme exhaustion the docs thought it would make a little more sense to keep him overnight and monitor him a little more. For the 32 hours we were in the hospital, Andrew probably slept for about 27 hours; he was really only awake consistently for the last four hours of us being at the hospital.  While there, when he would wake up, he struggled to keep his eyes open, might watch 15 minutes of a movie and eat a few bites of food, then zonked out again.  During the night the doctors would wake him up to ask him some questions (since they had him on neurological monitoring due to his lethargy and odd behaviors), he usually got them right, but on one occasion none of us could wake Andrew up and after about five minutes of trying really hard, the doctor had to give him a pretty aggressive chest rub with his knuckles and Andrew finally said, "huh."  When the doctor asked him who I was, Andrew said, "Mr. Incredible" with an attitude that was like, you should know that.  Andrew also said that it was 2008. When the doctors clarified the year, he corrected himself and said it was 2007.  His behaviors and inability to rouse were so concerning to the doctors that they were planning on ordering an MRI of his head in the morning because they were concerned that his cancer had spread to the brain. Thankfully, Andrew woke up in late morning that day and was able to respond much better than he had the night before, although still falling asleep while the doctor was talking to him and while he was trying to put some eggs and bacon in his mouth (if you have ever seen those videos of babies falling asleep while eating, that was Andrew).  The doctor wasn't completely sold yet, but still not ready to order an MRI.  Kristi got Abigail out of school early and they came to visit us in the hospital and Andrew perked right up when Abigail got there.  He stayed awake the rest of his time at the hospital, so when the doctor came back in to check on him she was rather relieved with how he looked and was communicating, so she put in the orders for discharge.  I guess Andrew just needed his best friend/sister there with him.  Who would've thought that we would be so relieved for the diagnosis to be a severe case of pneumonia and strep throat.  Thank you to everyone who has stepped in to help in some way, offered to help, and prayed for our family. Your thoughts and care for us means the world to us and we are extremely grateful!

Getting admitted...

Sissy to the rescue... proving he is ready to be discharged.  This experience was great evidence of the power of presence.  Sometimes just being there is enough!

It has been so long since we last updated the blog, I hardly would expect y'all to read a lengthy explanation of all the stuff we could write about; therefore, I will give some brief descriptions with pictures.  (Plus, that gives me the excuse to not need to write a lot.  I leave that to Kristi)!

It is rather difficult to remember past last week, so I am having to go through pictures on the computer to remember what we have been up to; therefore, I am also going to post things in order from most recent to further in the past.

-Abby has continued to play A TON of soccer because she really just can't get enough of it!  Such a treat that Pastor Joe and Mindi came out to cheer Abby on during one of her 3 games this weekend!

-Grace had kindergarten round-up for Campbell Elementary last Friday.  We can't believe she will be starting kindergarten in the Fall!  She was so excited to go to bubba and sissy's school and that she was able to see some friends from her current PPCD class there, along with some neighbors.  She walked off to the classrooms without us (while they went over details for parents) and had no issues whatsoever.  We are so excited for next year and thankful for all of the teachers, therapists, and aides who have invested so much in our little girl over the past four years of school!

-Two Saturdays ago, the school my sister (Becca) teaches at in The Woodlands was having a 5k run in support of pediatric cancer, so Andrew was asked to be one of the kids cutting the ribbon before the race.  He had a lot of fun being able to participate in that event, but I think Grace might have enjoyed the festivities even more.  After the race began, we walked to one of the water stations where my nephew, Joe, was handing out water and we sat down there for a moment.  As each runner passed, Grace cheered for them at the top of her lungs.  Some of the runners had their dogs running with them as well, so Grace would also cheer, "Good job, doggy!  You're so cute!"  As the runners would drink water and then throw their cup on the floor, Grace was a little confused.  She got a cup of water from Joe, drank it, and then chucked it onto the sidewalk just like all the runners were doing.  My description doesn't sound that funny, but I assure you it was hilarious.

Grace just couldn't resist, she wanted to race too!

Andrew loves German Shepard's, so he had to get a pic with this pup

-Abigail and I got to go on a daddy/daughter date with a 50's sock/hop theme at our church three Saturdays ago (it was sponsored by the college kids/young adult group, in order for them to raise money to go to an orphanage down in Mexico that our church has a relationship with).  It was so much fun taking her on a date!  So much of the individual time I get with Abby is on the long car rides going to and from soccer, so it was a pleasure to have alone time with her.  I praise God for the young woman she is growing into and for the constant transformation taking place in her life.  I know everyone loves their kids, so it isn't like I am claiming that I have it better than anyone, but I am stating that I do feel extremely blessed and grateful that Abigail is mine!  I make a lot of stupid decisions in life, but I think the best decision Kristi and I ever made is choosing for me to quit working when Abigail was born, so that I was able to stay home and really help raise her (as well as Andrew and Grace... but Abigail was the first).

-On the same day that Abigail and I had the father/daughter dance, that morning Kristi took Andrew to a superhero party put on by Sunshine Kids (a local organization supporting pediatric cancer patients and their families).  Andrew loves all the Marvel and DC superheroes, so he had a blast at this event.  He made some crafts, took pictures with superheroes (which includes Kristi, since she's pretty super as well), had a caricature drawn of them, and enjoyed just having some alone time with Kristi!

-The big kids got to go to an Astros game with their besties, Mrs. Kathy and Mr. Alan!

***This is Kristi with a quick prayer request :-)- Andrew's pain has been very well controlled since his last treatment in early March, which almost feels eerie in many ways because we have never gone this long without break through pain.  I literally can't stop praising the Lord for this break in pain and at the same time I'm fighting the temptation to live in a place of fear, anticipating the arrival of the REALLY bad pain that typically shows up with a vengeance after the honeymoon phase (temporary relief in pain that typically lasts a few weeks) post treatment ends.  God can absolutely keep that pain away and not allow the honeymoon phase to end (even though it feels unlikely because his pain has been so difficult to control and always a moving and disappointing target), so I'm holding on to hope that this relief in pain is evidence of PRRT working, that the pain would stay away, and that we would be able to get our sweet boy off of some of these crazy pain meds.  This feels like a giant, sort of crazy prayer request, but I'm going to ask you to please join us in praying for these requests because I know that our God is able!

Andrew's shirt says it all...  "you can't stop awesome" and boy is our God AWESOME!!!

I know we say it often (but it never feels like we say it enough), we really do appreciate all of you and are grateful for your willingness to walk through this journey with us.  God knew we wouldn't be able to do this without all of your support and encouragement, so I am thankful for His wisdom and provision through each of you!

This is Emme smiling, she appreciates it as well!