Saturday, December 9, 2017

All kinds of updates

Like a riveting movie, the suspense of the Ross Family shenanigans mounts...

There are way too many details to capture in one blog post, so here are the highlights (for anyone not on Facebook, I apologize, these updates are long overdue and I'm so sorry)...

-Andrew continued his "wingman" duties for Triumph Over Kids Cancer Foundation at the Big Easy Fundraiser.  We continue to be so grateful for those who stand in the gap for children with pediatric cancer.  Thomas Morstead, the punter for the Saints, and Andy Sacks, an Academy Award winning director, hosted the hugely successful (and super fun) fundraiser.  Check out Andrew's speech....  SO PROUD OF THIS GUY!!!

-Andrew turned 9 years old on Nov. 26th.  We celebrated his birthday in true Harry Potter fashion with the cousins a few days before his actual birthday, since he was going to spend his actual birthday in Dallas at one of Abby's soccer tournaments.  While that might sound sort of unfair or a buzzkill in many ways, if you knew the amazing girls and families that make up Abby's soccer team, you would know that he couldn't have been surrounded by more love.  Abby's team surprised Andrew with a birthday cake and gifts.  We have only been a part of this soccer team for one season, which is hard to believe it's been such a short time because they truly feel like family (added bonus.... the girls on the team are crazy talented ;-).

Birthday fun with the cousins!

Celebrating with Abby's soccer team!

Much bonding over being brothers of sisters playing a lot of soccer.  Love the friendship these two have forged!

Jaz, one of Abby's sweet teammates!

Birthday morning in the hotel room!

-The day after Andrew's birthday he went in for a day of scans in preparation for his second round of PRRT.  PRAISE THE LORD the scans showed the tumors are stable.  Remember our huge prayer was that there wouldn't be any progression (because then we wouldn't have been able to continue treatment which would have been devastating), so stability is certainly praiseworthy news.  The next day Andrew received his second round of PRRT and went to stay at my in-laws in The Woodlands since he can't be around Grace and Abby for 6 days after treatment and he is suppose to stay a meter away from us during that time too.  It is never easy being apart, however, by God's grace this time was easier than the last time, for a couple of reasons.  My mother in love came to stay with the girls and I while David and Andrew were gone, which allowed me to pour into Abby in ways she really needs (especially during that time) without having to keep up with meals, laundry, dishes, and taking care of Grace, which was much of our focus during the first round of PRRT.  Also, we did a good job of staying super busy, which is also a great distraction.  The time went faster and more smoothly for Andrew and David too since they knew what to expect, the generous gifts Andrew got for his birthday kept him busy and the highlight and new tradition of PRRT time, the boys went camping.  Andrew had a blast getting to do a lot of things that would make his mommy way too nervous, so it's best done during daddy day care time.... things like playing with matches, an axe throwing competition (trying to make it stick in a tree), etc. 

Andrew becoming a super hero... becoming radioactive!

He totally rocked his 5 hour infusion! 

Why not camp while radioactive?!?!...  brilliant idea that David had!

-This time around, the aftermath of PRRT has been different, in that the first week after treatment he had some very intense pain and throwing up (one morning he said it was the worse pain he's ever had); however, the past 5ish days he hasn't had any breakthrough pain... at all (that's not normal), so we are overflowing with gratitude about that and praying the relief in pain is not temporary and lasts more than a couple days like last round. Andrew had to get the terrible awful shot in his butt on Monday (he will have to do this very painful shot every month for the rest of his life... unless God says otherwise) and he was so brave.  I also got to watch him be the Andrew I know and adore so much as he encouraged other kids at the infusion center as he waited (forever) to get his shot.  This little boy in particular Andrew showed him what a great friend looks like as he played games with him, reminded him that he is brave and courageous and has a God that loves him.

-Grace took the COGAT test this past week, which still blows our minds that she was able to take a test 3 hours a day for 4 days straight (she will have to take this test in Kinder, so I guess it was good practice).  Apparently, I agreed to it in her ARD meeting... you know the meeting that took place while Andrew was have an endoscopy/biopsy.  They took Andrew back, I rushed to Grace's meeting and rushed back to get there before he woke up.  Clearly, my mind was elsewhere during that quick ARD meeting, but I'm grateful that Grace rocked the test and was so proud of herself for being such a big girl and "taking a test just like Bubba and Sissy," verses it causing her to hate all things school.  Some other funny Graceisms...  she LOVES Santa, but wants to get no where near him.  She wakes up before us most every morning and meets us in the hallway fully dressed, shoes and everything.  She has got skills when it comes to putting an outfit together that matches (and she doesn't just take the shirt and bottoms at the top of the pile), in fact she does better than David in that department.  Her favorite sayings are "oh my word."  If she dresses up as someone or something, she loves to take off the costume and say "it's me," as if she really had us fooled.  She says "thank you majesty" anytime she thanks us for something.  She recently said in her silly voice "don't be a chuckle nuts" (cue the entire family fall out laughing).  Moral of the story is, there is never a dull moment with this kid around and seeing life through her eyes heightens any experience by a million.

See Grace and I in the right hand corner of the pic?  That is as close to Santa as she would get!

While David and Andrew were away, Grace had a cardiology appointment...  thumbs up for rocking her echo!

And a thumbs up for a great report!  Thank you Jesus!

We found a petting zoo at a Christmas event in Rosenberg.  Grace made Abby touch all the animals she was scared of touching, but she agreed that she would touch this goat with Abby so I could take a picture.   

It's officially Christmas time!  Grace is giving the dancing snowmen a good daily workout!

"It's me, Gracie!"  In case you thought that was an elf next to Santa!

She should really be her own emoji!

-Abby continues to be my "goose".  She's my wing girl.  I love hanging out with her because she is so sweet, funny, helpful, wise, and thoughtful.  She continues to LOVE soccer (her team finished the season undefeated), just started her basketball season, has some pretty amazing friends, loves school, and is all around a great kid with a huge heart.

Abby in her happy place... lovin' on kiddos with an extra chromosome!

Abby went to school late the morning Andrew had PRRT because she wanted to spend time with him before they had to be separated for 6 days.  He woke up in awful tummy pain, so she just snuggled him through it.

-How about this for the finale...  you all know that our normal over the past 6 years is best explained by the term varying degrees of crazy, well Tuesday's middle of the night shenanigans was one for the record book.  It is a contender for the top two or three scariest events of my life, in fact it may even be #1.  At about 1 am, only about an hour after we went to bed, David jumped out of bed and laid on the floor clutching his legs with a tone of voice that I have never heard from him before.  I could tell it was a pain like nothing else he has experienced (and you know he has had all sorts of injuries from tearing his ACL, compartment syndrome, broken hand, etc from playing soccer, to other injuries that come from flipping off of walls, jumping onto mailboxes, etc).  I tried to help him massage the pain, and it subsided, until a couple seconds later when he said "oh no! I can feel it coming back"... he was in agony again and that same sequence happened again.  He got up and limped as quickly as possibly to the bathroom because he said he felt like he was going to throw up from the pain.  He was only in the bathroom for a few seconds then I heard noises (banging on the wall) that I knew was him falling.  I ran into the bathroom to find him on the floor looking pale, sweaty, very disoriented, and sort of shaky.  I helped him up and said "lets get dressed I'm going to take you to the hospital just to be safe"...  at first he said no he was fine, but I convinced him to get dressed just in case we changed our minds.  He agreed and went into the closet where he once again passed out.  He didn't lose consciousness, but was again very disoriented and couldn't get up despite multiple attempts.  I helped him up again and called 911 because I really felt like maybe he was having a stroke or something because his speech seemed a little slurred too.  Plus, I couldn't leave the kids at home to take him to the hospital immediately.  My parents arrived at the same time the ambulance did, so we went to the ER.  After lab work, a CT, and ultrasound, they couldn't find the cause except to say that his GFR (the way his kidneys were working) was a bit compromised, so they said he could be dehydrated which perpetuated a severe muscle spasm in his hip/leg and the passing out could have been caused by the pain.  All I could think of during that awful experience is that I need my teammate to be ok.  Our life is so hard that I can't imagine not having my teammate to lead us through the wilderness.  Of course, God is my ultimate provider, sustainer, and rock, but I'm certain that He very purposefully gave me David as an earthly world class teammate knowing how desperately we would need a solid team that has our eyes fixed on Him.  We are so grateful that David feels back to his normal self, so much so that he played soccer tonight.  We are praying we never ever have to experience anything like that again.  If nothing else, it made me love and appreciate my man even more (if that's even possible).  

***GIANT HUG FROM GOD ALERT-  After a practically pain free week and David starting to feel like himself again after the horribly scary episode a couple nights before, this is what we woke up to on Friday morning...

Will you please pray that we continue to see a huge improvement in Andrew's pain, that it would be a direct correlation to ALL of the tumors shrinking, and that there would be no new tumors whatsoever?  Please also pray that David (and the rest of our family) remain healthy.  THANK YOU ANDREW'S ARMY!!!  Thank you for being our people!  We love and appreciate you so much!

Sunday, November 12, 2017

Radical hope

I feel sort of behind on posting, so I'm not sure where to pick up other than saying that as it relates to Andrew's pain it has gotten a little better since we changed some of his pain meds. Unfortunately, his body has become desensitized to opioids a good bit, since he has been on them for so long and at such high doses/frequency.  There were a couple of mornings when Andrew didn't wake up with tummy pain and that was amazing, but then we would see the pain return later in the day.  We are still praying that PRRT will radically disarm his tumors and we will see some pain relief and be able to back off on some of his pain meds.  This is a huge prayer of mine because then we will know that something has finally knocked the cancer back some, but also, I hate that I can hardly remember my boy (how different was his personality, his energy level, etc) before pain meds...  before we heard the words that our boy has cancer.  Will you please pray that his scan on Nov. 27th does not show any disease progression (because if there was there would not be any reason to continue with PRRT), but instead his tumors are stable (unchanged) or a home run would be that we already see some regression (highly unlikely this early on, but we serve a big God, so let's ask Him)?  Lord willing, Andrew will receive his second round of PRRT on Nov. 28th.  We scheduled it on that date, so he wouldn't be radioactive over Thanksgiving and his birthday (that would really stink to not be able to be around your family on those two holidays).

This weekend, Andrew and I had a mommy/son date.  We went to ifly (which was super cool), the LEGO store, Cheesecake Factory, watched a movie in our hotel room, and just laughed a lot!  We had such an amazing time together and I couldn't help but praise the Lord all night that Andrew didn't have any tummy the entire day and night.  It was almost unbelievable because he ALWAYS has tummy pain at night.  Naturally, my mind went to trying to theorize why the lack of pain, hoping it could be a mommy's touch (his cancer impacts the endocrine system, which is tied to our emotions, so maybe he was having so much fun that his pain didn't have a chance)...  then came this morning...  He woke up in agonizing pain that turned our morning plans of playing LEGOs and going to breakfast (his favorite type of food is breakfast food) to laying in bed snuggling, crying, praying, reading Scripture, throwing up, and sleeping.  While that was far from the morning I had envisioned, I can't help but wonder if that too was a part of God's blessings on our date.  You see, that may be the worst pain I've ever seen Andrew in, but I was able to love him through it in a way I wish I was able on any other given day; however, the needs of our two other children, work, etc, make it difficult to stop everything and just focus on him.  As I cried with him, rubbed his back, and encouraged him while he threw up, I couldn't help but ask God if this was His idea of bonding time with my boy.  As he sat hunched over the toilet exhausted from throwing up (and looking like he had just run a marathon), Andrew said "thank you for being the best mommy ever.  I'm so proud to call you my mommy and grateful that I get to be your son.  Nobody could ever take care of me like you do."  Once I got him settled in bed in an attempt to sleep off the pain, he reiterated the same sentiment and concluded with "I'm sorry you have to deal with my tummy pain.  I know when I'm in bad pain I can sort of freak out and maybe be unkind, so thank you for helping me through it so much."  I hate that he apologizes to us for his tummy pain because God knows, it's no fault of his own.  Long story short, the time I spent with my boy this weekend was priceless, both the mountain and the valley!

As we continue to live in the fiery furnace, here is what the Lord has recently convicted me of.  I didn't know this, but I realized I have struggled with the fact that I don't have a sliver of statistical hope to hang on to.  You know, even if we were told that we only have 20% chance Andrew would be cured, at least I could be praying that God will allow us to be a part of that 20%.  Instead, the (earthly) statistics for Andrew's case looks more like this...  it is impossible that he will have NED (no evidence of disease) and even if that was achieved, 100% of the time it comes back.  Therefore, without God's radical intervention and healing there is no way Andrew will be free from cancer or be granted a long life with cancer that is well controlled. Once God convicted me of my desire for some earthly statistical hope to hang on to, I realized He is calling me to a radical hope...  the kind of hope rooted in God and only God.  There is nothing else to hang on to except God and the truth is there isn't anything more powerful and able than God.  Will you please continue to pray for Andrew like he is your own boy.  Pray that God would radically heal him and that his faith would be strengthened (as well as the rest of our family)?  THANK YOU!!!!  #Hopeon #butGod  #Heisable

Thanks to Sunshine Kids, we got free tickets to Disney on Ice.  Going with Grace makes everything magical.  She thinks everything is awesome!

While Andrew and I were on our date and Abby was at a birthday party, this is what Grace and David were up to!

I have to end on a super happy note...  last weekend these precious elves surprised the kids by putting up a Disney themed Christmas tree and leaving tons of gifts under the tree.  We are going to Disney World in January (Abby has a soccer tournament there that we are going to make a family vacation), so this helps us get super excited for Christmas and our upcoming trip!  You can't help but smile when you see this tree and it even has a remote control for the lights!

Sunday, October 29, 2017

Scatterbrained Update...

I pray as I type this that our Andrew's Army troops are well and encouraged with God's unfailing love and grace washing over each of you!  Each of you are more deeply loved than you could ever dare to imagine, so I pray that regardless of where you currently find yourself...  standing on a mountain top with breathtaking views having come on the heels of hard work shlepping up that mountain one step of faith at a time OR in a valley where you feel surrounded by the enemy on every side and some how those enemies never seem to tire (they are always well fed, well rested, and always exercising so their muscles are intimidating)?  In case you wonder where we are, we refuse to set-up camp in the valley because despite our extended stay there (like almost 6 years) it is not our home, but instead the classroom that God uses to refine us.  I guess that's why my most recent prayer has been "God what ever you are trying to teach us, please help us be quick learners and give us some reprieve."  We continue to choose to "not be afraid and believe" because we know the character of God who is the author of our life's story.  This does not mean that our life is any easier, instead I have to tell you the past 3 weeks have been brutal and relentless as Andrew's pain continues to be at an all time high, despite increasing the dose of some of his heavy pain meds (although we might be seeing some improvement, Andrew was able to stay at school for a full day two times this week, so that's a huge praise).  To give you an idea as to what type of pain meds he is on, we have to take him to see his oncologist tomorrow just so they can lay eyes on him and document that they've seen him because his oncologist and pain Dr are getting harassed by the FDA because of all the narcotics they write for Andrew (thanks to the opioid crisis in our country).  Just a quick PSA- we ALL struggle with some sort of sin (if we didn't, then we would be Jesus and that would be a whole other issue) and for some that comes in the form of addiction to pain pills.  If you, or someone you know, is battling this addiction, my heart goes out to you because I know you would give anything to get out from under it and had you known it would be this hard when you took that first pill you would have run the other direction... really fast.  The thing about this addiction that is so frustrating is that it not only negatively effects the person with the addiction and their family, but it negatively effects all the people out there who genuinely need these medications due to SEVERE chronic pain.  Andrew can barely get through the day with ALL of the pain meds he's on, so when there is a hold up on refilling his prescription because the pharmacy can't dispense what they have decided is too much at one time or refill it too soon or David and I have to feel like drug dealers anytime we are trying to proactively refill Andrew's pain meds in preparation for making sure the school has enough on hand, we won't run out while out of town, etc it sucks the life out of you (while scaring the day lights out of you at the mere thought of Andrew missing a dose of his pain meds).  I pray that anyone reading this does not take the sharing of my heart as a personal jab or judgement against you, but instead a plea to do what ever you can to help put an end to this opioid crisis.  I don't believe that vision is possible without calling on the Lord, so let's not leave Him out of this important conversation.

I apologize for getting off on a tangent, so to recap...  this has been the hardest 3 weeks of this journey yet (excluding the first 2 weeks after Andrew's diagnosis on Feb. 22nd) because Andrew has never experienced this level of pain and discouragement.  God has called me to reevaluate what I want more... His blessings (healing my boy) or Him (an intimate relationship with Him...  to know Him better).  It all relates back to leaving my boy on the alter (trusting God with his future whether that mean He chooses to heal him on this side of heaven or not) and taking him off when I get scared because I can only truly experience intimacy with God when my hands are open and willing to say "Thy will be done."  The lyrics from one of our favorite songs best sums up where I strive to let my heart and mind rest...  "your world isn't falling apart it's falling into place, stop holding on and just be held."  There is purpose for our suffering, so instead of clinging, we will be held by the One that holds our future.  Will you please continue to pray us through this lesson and this season?

The kids at Campbell Elementary raised a ton of money for TOKC (Triumph Over Kid Cancer) in honor of Andrew during Pediatric Awareness Month.  The paper dolls in the background are what the kiddos decorated as a symbol of being a part of Andrew's Army.  

This is how Andrew has been watching the Astro's play... reenacting every play!  He is not our sporty kid (which is a blessing in disguise because it would have been ever harder for him to have to give up something he loved because his body couldn't handle it), but the World Series has brought him a whole lot of smiles because its been fun to cheer Altuve (we always root for the little guys ;-) and team on as a family!

I haven't talked about Abby much lately, but she continues to be a sweetheart and pursue excellence at everything she does, whether at school, soccer, taking care of her siblings, etc.  Abby's happy place is on the soccer field and we absolutely love getting to watch her do what she loves.  Her nickname is "goose" because she's my wing girl, always ready to jump in and help where needed and eats up every second of a mommy and Abby date she can get (we try to build this time in weekly).  Will you please pray for her that she would never feel forgotten about and also that she would learn how to extend herself grace when she makes mistakes (we talk a lot about getting "better" not "bitter") or not even make a mistake, but not perform to her fullest potential?  It's hard for me to even imagine how a 10 year old is able to process and navigate this incredibly difficult journey, much less to do it with so much grace, but she does and does it so well (praise be to God and God alone). Thank you for praying for our sweet girl!

Here is Abby expressed in pictures this weekend...

This is the only pic I have of Abby playing soccer this weekend 😂...  in the middle of the pic you can see Abby and the girl she was defending.  Can you tell why we always root for the little guys/girls😉.  She may be tiny, but she is fierce!

 Playing basketball with the big boys at our church's Fall Festival!  This kid only has one speed...  full out fever...  ALWAYS!  These pics were taken before the game got serious.

 Helping Grace play games...

 Helping Grace at Gigi's Playhouse...

Watching David play soccer...

Grace continues to keep us on our toes as always...  On Wednesday at swim lessons she slipped off the step while she was playing, waiting for her turn, and went under water.  The mom of the sweet boy she was taking lessons with had a better view of her than I did and immediately yelled her name, so I ran over, stepped in the pool, and plucked her out.  Grace didn't cough or anything after I pulled her out (although she did cry because naturally she was scared), so we don't think she inhaled any water (proud of her for holding her breath that whole time, as she worked to try to get back on the step), but to say it was mortifying is an understatement.  Grace has developed a cough, so we took her to the ER last night to get a chest x-ray, just to make sure she wasn't developing pneumonia or unhappy lungs from her scary underwater experience.  Praise the Lord everything looked fine.  PRAISE THE LORD for His constant protection and provision for this kid!!!

Fall Festival fun...

Grace loving her time at Gigi's Playhouse!

Last weekend we had our second annual, hugely successful gala for Gigi's Playhouse!  Thank you to all that have supported Gigi's Playhouse, it is truly changing the lives of those with Up's as well as those that serve our kiddos and their families!

Our amazing board!

My hot date...

Some of my favorite people posing for Prom 2017!

Thank you, Andrew's Army, for hanging on through this crazy ride along with us!  Please continue to join us in praying that we will "not be afraid and believe!"  Believe that God can and will find a way to heal our boy!