1) Quick update on Andrew and Grace- Andrew's pain has been pretty intense for the past two weeks. He has had to go to school late because he wakes up in terrible pain or come home early from school because the pain was so bad he was throwing up. We are praying with every ounce of our being that it is just evidence of tumor death and not anything else. Each time after PRRT, he goes through a time where there is a honeymoon period (pain isn't bad right after) and then it comes on with a fury for a couple weeks, the timing/interval in which this routine plays out is always different, so it's hard to anticipate. Lord willing, we should start to see pain improvement now. Will you please pray this is the case? Also, Lord willing, his next round of PRRT is scheduled for March 8th, with scans on the 7th. Will you please pray his scans on the 7th show no progression, a whole lot of regression, healthy kidneys, and we get the green light to move forward with his final round of PRRT on the 8th?
This picture says so much... notice Andrew's face is bright red, that's evidence of a boy in insane pain... pain that caused him to throw up just before this pic was taken. Despite the red face, he smiles as he knows his little sissy (who also knows pain and suffering all to well) insists on snuggling him and loving on him while he attempts to sleep off the pain.
We have such a huge yearning in our hearts to see Andrew off of SUCH heavy duty pain meds or at least on a whole lot less of them because it's so hard not being able to remember his personality without being "on drugs." Andrew is super tender-hearted, loves to serve younger children, always looks for the kids that are "left out" or a little different and befriends them, and he loves his family fiercely. All of these qualities remain in tact (praise the Lord), the things that make it hard to watch is when he seems manic (talks really fast and nonstop about whatever he is interested in at the moment... it's usually something related to what his amazing imagination is dreaming up) and when he gets overly sensitive. We know that his medication induced personality changes could be SO much worse, so we praise the Lord that it doesn't manifest in the form of aggression, etc, so we can absolutely endure, it just makes it hard to really connect with him at times because it feels like an unfamiliar (it's so out of character) and moving target. It is especially hard on Abby to see his personality change and not know exactly how to manage it because that's her best friend whom she loves to pieces and just wants to love well, but it's not as easy as it used to be. Also, Andrew is dealing with just feeling "different" at school because his life is so much different than all of the other kids (he is constantly faced with questions about his mortality, he misses a lot of school, when he is at school he is often times distracted by brutal pain, and he is trying to act as "normal" as possible, despite the fact that he's on medications that make him feel different and maybe act different, but he can't really control it). It has broken our heart to hear him share how he sometimes feels lonely at school. Andrew has always had a ton of friends and he still does, but there is no question that things have changed... even just as it relates to how much school he misses. When he isn't there kids naturally develop new patterns of who they partner with in class or play with in his absence, so when he is at school, it's hard to jump back in as if he had not been gone. Not sure if that makes sense, it's just so hard to explain. All that to say, will you please pray that Andrew can get off of heavy duty pain meds as soon as possible and not experience loneliness at school?
Bubba holding pressure on Grace's tongue for over an hour in the car!
She finally knocked out at the ER and the bleeding eventually stopped over 4 hours later! We were grateful her and David were home by 3:30 am (before the big kids woke up... they hate when she's in the hospital).
More on Grace- so, you know she took the COGAT test this year (it was 3-4 hours a day for 3-4 days) and her teacher said she crushed it. She stayed engaged during the whole test and was really thinking through the answers. I thought that was a huge accomplishment that she took the test, so when we got the results back we were crazy proud of her and once again marveling at God's awesomeness. In a couple of the sections Grace tested at a 2-3 year old level, but in the quantitative (math) section, she scored as a 6 year old (she's only 5 years old, has an extra chromosome, and has spent much of the first 2 years of her life intubated, sedated, and in the hospital). Now that's ALL God (working through her amazing teachers who love her like their own and set high goals for her because they truly believe in her) because let's be honest, it's not like we do a whole lot of therapy outside of what she gets at school (which is easy to feel guilty about) because we just don't have time for it with all the Dr's appointments we have with both Andrew and Grace, all of Abby's activities, work, etc.
Grace being both a cheerleader and coach at one of Abby's soccer games (she legit, has good coaching tips... "pass it, hustle, nice try..." :-)!
Can you find Grace in this pic? Keep in mind that an extra chromosome usually leads to being extra flexible... she's the second one in from the right ;-)
2) David and I have found our new favorite place to work out! It's called F45, it's in our neighborhood and it's owned by two amazing Christian families. We had only been there a couple times when one of them asked me about what the meaning behind my Andrew's Army shirt meant and before I knew it they had created the coolest fundraiser for our family! Last Saturday, they had 3 classes in the morning where everyone wore Andrew's Army shirts that were provided by the gym for a donation in return. This little, brand new (has only been open for 2 months now) gym raised $2,000 for our family and we were blessed to witness a bunch of new and old friends pushing themselves to the max in honor of our boy. What a blessing! I walk away from these classes most every time more sore than I have been in years and it is the most fun and motivating workout environment you could imagine. If you live anywhere near Sugar Land, please come try F45 in Greatwood! You will love it, I promise!
One of the two super cool owners, Derek! These guys have hearts of gold and are doing Kingdom business in that place!
One of the 3 classes that day! I didn't get a pic of the class we participated in that day... maybe we were seeing stars and about to pass out! When David and I workout together, we are a little competitive ;-).
3) One of my favorite ministries of all time, which the Lord has so generously allowed me to be a part of, is a girls bible study that we started 3 years ago. Watching the Lord use these girls as He grows them in their faith is super cool! Over the years, the Lord has put it on our hearts to help these girls become more prayerful people and to serve others sacrificially. In a way only God can, He brought a special man into our lives to build community with and love well because he literally has no community, in fact he doesn't have any contact with the outside world. In many ways, He is a prisoner in his home because of a stroke he had many years ago that left him wheelchair bound and only able to use one side of his body. All of his family lives in India. We have made it a point to go to his house and plant flowers in his front yard, bring him Christmas gifts, play games, and above all share God's love with him. He is Hindu, so he has told me about the 365 God's that he worships. Despite the fact that we have different faith backgrounds, he absolutely LOVES the company and is always happy to have us pray over him. This past Sunday we brought him some Valentine goodies, played bingo, and gave him his very own Bible. We shared with him about how much Jesus loves him and all that He willingly gave up for him as evidence of that love. Will you please pray that the Lord would bring our sweet friend to a saving faith in Christ and that God would be his ever present help and companion?
Helping our sweet friend get acquainted with his new bible!
Playing Bingo!
4) We had been praying about finding the right counselor for the big kids (just someone to help them process their feelings as they endure this tough journey we are on) for over 6 months and I had emailed a number of people, but just hadn't found the right fit. Well, in His perfect timing, He answered that prayer by leading us to a counselor that is literally a God send. After only a handful of sessions, I feel like she knows my kids as if she had known them since birth. They both LOVE going to see their counselor (and I love the couple minutes I get to chat with her after her sessions with the kids). Initially, the kids weren't excited at all about seeing a counselor because they felt it was weird to talk to someone they don't even know, especially when they really just prefer talking to us. We explained to them that their mommy and daddy are big fans of going to counseling before the wheels fall off. We shared with them how we went to marriage counseling and retreats before we were married and continue to be proactive in making our marriage a priority. They willingly, but fearfully agreed to go see the counselor once to see if they liked it. We showed up to the kids first season to find the counselor waiting for us in an Andrew's Army shirt (one of my dear friends dropped one off on her porch before our meeting without me knowing anything about it). From the moment they saw her standing there with her Andrew's Army shirt on, along with her sweet and inviting disposition, I could tell they were sold.
*While we were in Orlando for Abby's soccer tournament, one night (late at night when the kids really needed to be sleeping because we had an early morning the next day), Abby and Andrew had a conversation that I thought might destroy me because it felt as though I could feel my heart was beating outside of my body; so vulnerable that it was hard to breath, but I knew I had to help them navigate the expression of their feelings. Andrew basically shared with Abby that he is afraid that someday when she's older and has a family of her own that he doesn't know if he could handle if they had to live far apart from each other (he specifically said, "I know you love playing soccer and I love that you play soccer, but what if you have to live in another country someday... this brought on a lot of tears), she might forget about him, and she might stop taking care of him because she will have a family of her own to take care of. He went on to say, "what if God calls me home early, I want you to always remember me and smile and never ever forget about me, I don't want you to think about times when I made you mad or upset you." Needless to say, there were lots of tears, hugging, reassurance, and prayer. The conversation ended up being such a blessing, giving us a ton of insight into Andrew's heart and helping Abby see why he may respond to her in certain ways. I'm grateful David and I have their counselor to help us process these types of feelings with the kids. She (the counselor) confirmed that Abby is Andrew's #1, so the reassurance of her love for him and that nobody, no time, no temporary separation will ever hinder her love for him is something he needs to be reminded of. Something else that we are always striving for is to make sure we have a God-honoring balance as it relates to Abby's soccer. If it were up to her, she would play soccer all day every day (although she is great about prioritizing her walk with Christ over soccer). Their counselor has affirmed for us over and over that soccer is a very healthy outlet for Abby. It is her "safe" place... the only place she can go and not think about cancer, Grace's heart, etc while having a ton of fun. Abby also loves that David and I are so purposeful about watching and cheering her on whether it's practice or a game. Despite the fact that we love watching her play and love our soccer family, it makes all the time, money, and energy we allocate to her love for soccer worth it to know that it is a healthy escape for her because she spends SO much of her life serving others (especially her family). All that to say, as I prayed about finding the kids a counselor I did something that is difficult for me and that was to just be still (wait) until the Lord moved. I tend to be the type that wants to get things off my "to do" list as quickly as possible (i.e. find the kids a counselor... check), especially if it is a task that impacts the kids spiritual, mental, physical, or emotional health. However, it took well over 6 months (including much research, emails, and phone calls) before the Lord brought us to this counselor that is perfectly suited for our family. While I don't know why He allowed a 6 month delay, it was certainly a reminder of God's faithfulness... He is never late; He knows our needs before we do; He is already where we are going; He is tender and merciful; and His grace IS sufficient for our time of need (not a moment sooner ;-).
The crew at one of Abby's basketball games this weekend!
I don't have many pics of Abby at soccer for some reason, despite the fact that she's always playing soccer, but I did find this pic from a tournament a few weeks ago. Abby lovin' on her bubba in between games!
This girl is something special (I mean Abby... although Emme, the dog is special too)! Love her heart that is so tender and so fierce all at the same time!
5) Last update I promise, but I have to make sure to document this moment for myself too because it was such a special one... our church had an Ash Wednesday service which was AMAZING!!! I took Andrew and Grace because David was with Abby at soccer. The service was a powerful way to start preparing our hearts for the next 40 days, leading up to Easter. We were reminded of our depravity (sin/moral corruption) that nailed Jesus to the cross. Cancer and congenital heart defects exist because we live in a fallen world... they (in addition to the heartache and devastation we see all around us) serve as a constant reminder to our family of the ramifications of sin (not Andrew or Grace's sin, we don't believe in the karma type of sin... you sinned, so you get a bad consequence like cancer... otherwise we would all be punished constantly/all day everyday, but instead the sin that entered the world as a result of the fall of man/Adam and Eve), but the story doesn't end there (THANK GOD)... our sin is trumped by the ultimate act of grace that our God displayed on that cross 2,000 years ago. As it says in Isaiah, He was pierced for our transgressions, He was crushed for our sins, the punishment that brought us peace was on him, and by His wounds we are healed! What a great God that He would die in our place, that makes Jesus the most loving man I know, but the fact that He conquered the grave... he didn't stay dead, He rose again and is seated at the right hand of the Father interceding for us. The peace and joy on earth we can find in Jesus (even when life really sucks) and the hope we have in eternity, changes everything! Sorry, I got off on a tangent (can you tell that speaking truth to myself is something I have to do often because it is powerful?), but between our pastor's teaching and the awesome time of worship, the Holy Spirt spoke to my boy in a powerful way. He worshipped with his arms around me and looked up at me once to say "Our life is so hard, but I know it's going to be ok, I know its going to be ok!" Later, he looked up at me and said how much he loved me, that he wouldn't want any other mommy, that he really loves that I always point him to God when times are hard, etc. Fortunately, since Andrew's love language is words of affirmation, he is really good at affirming those around him often, so this isn't out of character for him, but it was so heart felt. Through a plethora of tears, I shared with him how proud of him I am and how I strive to be as strong and brave as he is, how I admire the way he is truly broken about his sin and so serious about repenting (really trying to do things better), the way he loves others so sacrificially, and then I couldn't help but to start praying over him, at which point our precious friend, Mrs. Kathy, joined us in prayer. It was such a grace-filled time, all of which took place while Grace was both worshipping on her own or sitting on the ground with her hands folded and head bowed, praying (I was really proud of her for being such a good listener and so patient during the whole service). Since David and Abby weren't there, Andrew's bestie, Mr. Alan and his wife Mrs. Kathy, sat next to us on the front row (may favorite place to sit in church :-). Mr. Alan and Andrew went up to the front of church together to do an activity symbolizing being renewed and set free in Christ. They drew a cross together with paint on a canvas and prayed together while up there and I of course sat and wept as I witnessed a young boy and elderly man (although Mr. Alan is the youngest 82 year old I have EVER met) that could only be united in such a profound way by a God that is tender beyond words. Who knows how long either Andrew or Mr. Alan have on this earth, but one thing I know for sure, Andrew being loved and mentored by a man that loves the Lord with every cell in his body (despite living through some of the deepest loss and brokenness that you could think any one person could endure), has a bond with my boy that is unlike anything I could ever imagine (they literally have playdates 1-2 times per week for up to 8 hours sometimes and it is still never enough time for them to do all of their drawing, lego building, watching movies, etc), and has not a fear in the world about going home to meet his Savior someday, makes me ponder. Is the Lord so tender that He would unite their hearts hear on earth, so that when they go home (whenever that is... I've talked to God about Mr. Alan living to be 100 and Andrew getting to be an old man), Andrew will know someone upon entering heaven and not have to fear getting there and worrying about how he will know where to go? Well, I can't get my mind, heart, or fingers to type the rest of that thought, but I'm trusting you know what I mean ;-).
Not the best pic, but I had to snap it quick so I didn't look too awkward taking pictures during the church service ;-). These two are 73 years apart in age by this worlds standards, but they are both equally young at heart, and yet, oh so wise as their souls reflect God's goodness and joy even in the midst of raging storms.
Heading off to one of their weekly playdates!
"Let us hold unswervingly to the hope we profess, for he who promised is faithful."
Hebrews 10:23
***Will you please pray for my heart on Feb. 22nd, I don't know if that day will come and go like any other day or if I'm going to get taken out at the knees by the enemy?
***Friendly reminder... please pray for Andrew's next scans on March 7th! For more great news and the green light to move forward with his 4th and final round of PRRT! Please also pray for wisdom as to what the next steps should be after PRRT because at this point, we don't really have a plan... we need God to tell us and our Dr's what to do next.
This is what we would look like without y'alls love and support (this pic is courtesy of Grace during a daddy and Gracie date;-)!
THANK YOU ANDREW'S ARMY!!! You are our people!!!
