Thankful you haven't forgotten about us :-)

Holy cow, we have been MIA for waaaaay to long!!!  For those not on Facebook, you must think that we moved to Mars ;-).  I can honestly say that we have not had more than a few minutes to sit down each week, so wrapping my head around trying to play catch up on the blog felt like a daunting task.  I'm jumping on today to just give y'all an update on where we are at and not going to try and recap all that has happened since my last post because it might make you fall asleep or cause your eye balls to bleed.

If you can hang with me to the end of this update, I will reveal the super rad 2018 Snowdrop 55 hour Relay Race shirts that I'm SOOOOOOOOOO excited about!!!  You could always just scroll to the bottom, but y'all aren't cheaters ;-)

Let's start with this school year...  this school year has been one for the record books in that each kid has an exceptional teacher(s) that were clearly hand picked by a big God who cares about the details.

-Grace is in Kindergarten and absolutely LOVES school!  She is surrounded by kids who truly love her unconditionally.  David was watching her at recess one day and she had 3 or 4 little boys around her pushing her on the swing and playing with her.  Her friends in her class love to try and help her with everything, to which Grace often replies "Grace can do it by herself" and she will often times pick up her supplies and move to a different table to prevent kids from trying to help her too much.  Her teacher has high expectations for her and holds her to the same standards as her typical developing peers.  At our recent parent/teacher conference (the one that all kids have to get an update on how their child is doing at the midway point in the year), her teacher showed us all of her test scores and she is right where she should be, as if she were a typical developing child, and in fact she crushed some of the goals like being able to count to 20; she counted to 43 and then decided she was all done, but her teacher said "I'm sure she could have kept on going, but she lost interest."  I LOVE, LOVE, LOVE that her teacher expects big things from her and doesn't put a ceiling on her ability, we just stand in the back ground singing God praises because there is no explanation, other than His goodness, as He has put gifted educators in her life since she was 2 years old and then a whole lot of grace has filled in all the gaps.  Her teacher also told us that she is very chatty in class, always talking to her friends (often times when she is supposed to be listening to the teacher), to which I replied with total honesty, "I know it's probably really frustrating for you when Grace is chatty, for which I apologize, but I have to be honest that inside I'm praising the Lord because the fact that she can even be chatty and that her friends can understand her speech is such a GIANT blessing.  Many kids her age are working on one, two, and three word utterances and that doesn't account for the fact that she spent the first 15 months of her life sedated and intubated for much of it."  One of Grace's many gifts is her ability to make you feel like the most important person in the world when she sees you and runs to you with a giant smile and open arms.  When she sees her Bubba at school (she is always looking for him at school), I know she blesses his day in a big way because of how she always greets him with overflowing joy.  It makes all of his friends a little jealous I think because, who doesn't want to be made to feel like a rockstar for just being you, not doing anything special except just being you?!?!

My favorite picture of the whole year so far...  Grace in the science lab!!!

Grace is doing cheerleading as her extra curricular activity and she is crushing it!!!  It's a special needs team, so there are a number of teens and adults with Down Syndrome, but many have various types of special needs.  Grace is by far the youngest one on the team (second to her bestie Sadie, when she's there), but she totally knows her routine and loves to practice at home.  We can't wait to watch her and her team at her first competition in a few weeks!!!  She's also been doing speech once a week at Gigi's Playhouse with Mrs. J, a speech pathologist who is a super hero!

-Andrew's teacher this year is beyond precious!  She is GOOD PEOPLE!  Not only is she the sweetest little thing on the planet, but she's a great teacher who has a great perspective on making sure Andrew learns wha'ts important (she has no problem pushing him where needed), but doesn't sweat the small stuff.  You see, it's so hard to know how hard to push Andrew because only God knows how long he will be on this side of heaven, so you don't want to make his life unnecessarily stressful, but at the same time, we feel called to raise Andrew as if he is going to live a long life and, therefore, he needs to have a solid educational foundation.  That balance can be so hard to find, as it relates to EVERYTHING in life (which makes the enemy salivate I'm sure), from discipline, school, family, friends, preparing for the future (planning and saving for when the kids will need a car, college, etc) and Mrs. Stuart (Andrew's teacher) puts this momma's heart at ease because God gives her great perspective and discernment on what that balance looks like, so it takes a lot of pressure off of us. Another huge praise is that Andrew hasn't missed a day of school yet this year, except for when he missed to go with his besties, Mr. Alan and Mrs. Kathy, to a Sunshine Kids event at Minute Made Park where Craig Biggio hosted kiddos with cancer and their families for a day of fun hitting and running the bases, playing games, eating yummy food, and making great memories (especially cool for big Astros fans, like Mr. Alan and Mrs. Kathy).  Since Andrew has an adult disease and it is treated differently than all other pediatric cancers, Andrew rarely gets to see other kiddos who are in the same fight for their lives as he is.  I think it's really helpful for him emotionally, to hang out with some of these kiddos, since he can relate to them in many ways.

Andrew is continuing to ride horses as his extra curricular activity.  For years, we have prayed about what Andrew's "thing" is....  he's not the most athletic kid (which we see as a blessing from the Lord, since it's highly likely that cancer would have prevented him from being able to keep up with his peers in that area) and never looked forward to or loved an activity so much that he hated to miss, until he discovered horse back riding.  He lights up in a special way with those beautiful animals.  He has to take care of the horse, preparing it to ride (cleaning its hooves, getting its saddle and reigns on, etc), and cleaning it off after.  Whether its scorching hot or freezing he never complains.  He got thrown from one of the horses that got spooked, it was a scary fall that took 10 years off of my life, and it made me so grateful for helmets, as well as ALL that dirt in the arena (that I'm usually cursing because I hate how dirty I feel when I leave the barn) that softened the fall.  He was so courageous as he cleaned himself off and got right back on that horse.  I was crazy proud of him!  I really feel like those horses help with his pain, confidence, challenges him mentally (who knew there were SO many things to know when it comes to controlling a horse), gives him physical exercise (it's a great total body work out)... and now I'm getting teary just thinking about how grateful I am that the Lord led us to horseback riding (the sweet horses he rides, his amazing teacher, and the new amazing family we met at the barn, since our kids ride together, who have quickly become dear friends).  God is just that good!  The script He writes is full of twists and turns, but never fails to honor our prayer that we would see His hand in the details of our day.

 Andrew taking care of his horse after his ride...

Heading out to ride.  This is the time Andrew said to me, "I wish they had a noise machine with the sound of horses walking because that's my favorite sound!"

In terms of Andrew's health....  as far as we know, his disease is stable.  His next scan won't be until March, which is a little scary to not know before then what exactly is going on in his little body, but pain is usually a pretty good indicator for us and at this point we have been able to come off of one opioid entirely and we have been able to wean down on methadone ( a narcotic used both for pain and drug addiction) by over 60%.  He is still on 4 other pain meds, but this is huge because we have continued to see his personality get closer and closer to "normal."  We have no idea how long PRRT will hold his cancer back and we don't know what the next step will be, but we know the one who does know.  Will you please pray that God will clearly direct our steps as to what to do next (when, where, what, who)?  The Lord has brought this surgeon, who previously practiced at MD Anderson, but is now Chief of Pediatric Surgery in North Carolina, into our minds a few times lately.  She is world renowned for her ability to pluck hundreds of tumors out of little people's abdomens (often times requiring 20 hours or more).  I don't know if surgery will ever be an option for Andrew (it would in no way be curative, but with the goal of reducing the tumor burden, hopefully giving the cancer less opportunity to grow and for there to be less sites to treat in the future) and if so, when....  Is this the smallest the tumors will be now (post PRRT), so now would be a good time to try going after them again or will there be treatment down the road that may give a better response or new survival technology that would make it better to wait?  The hardest part is that there is no "right" answer, in the sense that his Dr's can't say definitively one way or another, so we need God to tell us.  I'm debating if I should reach out to that surgeon in North Carolina now or not yet.  While she's clearly an amazing surgeon, I'm fairly certain she has never had a child with Andrew's type of cancer before (not sure how much that matters) and our favorite Dr in Denver, Dr. Liu, (who is also a surgeon) has seen more patients with Andrew's type of cancer than anyone in the country, however, he is only an adult surgeon, so he can't operate on Andrew right now. Then, of course, there is a very real probability that surgery may not ever be an option.... can you see how we have more questions than answers?!?!  This is where y'all come in, will you please join us in praying for wisdom that can only come from our all-knowing, all-loving, all-powerful Heavenly Father? Please, also pray that Andrew's pain would remain well controlled and we can continue to go down on his pain meds and never need to go back up?  Thank you for being such faithful prayer warriors, knowing y'all are praying means everything.  A precious friend of mine, who also happens to be our pastor's wife, randomly texted me asking how she could be praying for me.  As I contemplated my response to her, I realized that while we had only been talking and praying about this surgeon for a couple days, the second I made my prayer request known to my sweet friend, it was as if I felt a physical and emotional release, a familiar feeling that always comes with knowing y'all are covering us in prayer.  I hope that you too have experienced the power of corporate prayer (even if not together physically, as we petition our good, good Father).

Andrew and I went to Legofest...

Our masterpieces...

Andrew LOVES lego minifigures....  they had a ton of shops with this many mini figures at each one!  

-Abby is at a 6th grade campus, that is impossible to adequately explain in words.... picture a place where learning is made so fun, purposeful, and "all in" in every way from top to bottom (I'll bet even the custodians dress up in tutu's, etc for color out days).  They are so focused on character and helping these kiddos become great humans, it's contagious.  Abby has 6 top notch teachers (she would have 7, but she has off campus PE) that anyone would be lucky to have just one of them any given year.  These teachers and administrators would literally swing from the ceiling, if it meant helping these kiddos learn better and build great character...

Here is Abby's Social Studies and Home Room teacher, Mr. Fraser, teaching a lesson on altitudes, etc. This is just a typical day at Poly Ryan Middle School

Her school has close to 700 kids, so she's had a chance to make a lot of new friends and you probably aren't surprised to know that her most favorite new friends are in the Life Skills class.  It didn't take Abby more than the first day to set her eyes on this sweet boy, Maddie.  Abby and a couple of her friends sit with Maddie every day at lunch (I love and appreciate that Abby's friends are always willing to join her in spending time with her special needs friends and they love them too).  There are a number of other kiddos in Maddie's life skills class (in addition to their teachers) that Abby also LOVES, so much so that she has requested that they make an exploratory class (which are 6 week classes where they get to explore activities like cooking, fishing, caring for animals, tennis, etc) around serving in the life skills class and I think her dream may be made a reality in the next 6 week session!  A few months ago, they had elections at Abby's school for House leader/Representative (within the first week of school the kids were each placed in one of 4 houses, Abby is in Amistad, which means friendship, and their color is orange).  Maddie is also in Amistad.  One day during lunch, the school was talking to the kids about what it means to be a house representative and at the end they asked anyone interested in running to put their hand up.  Abby came home and told me that at first she wasn't going to get a paper because she knows she already has a ton on her plate, but then she said she heard me in her head saying "Abby, you should at least take a paper and be willing to pray about it," so she took a paper (that also served as confirmation that they are indeed listening to us even on those days we really question that being a reality ;-).  The more important part of the story is that Maddie proudly put his hand in the air to get a paper too.  Abby spent a couple days praying about if she should run (dreading writing a speech and having to do a panel interview...  speaking in front of a bunch of people isn't her jam) and she came to me and said, "I feel like I should be willing to put myself out there and run, but I really wish there was a way I could help Maddie run, since I know it would be difficult for him to do it on his own.  I agreed to ask Maddie's teacher (who happens to be Grace's amazing teacher from last year and a dear friend), who then asked the principal and counselor (who are crazy amazing in their willingness to be ALL IN for the kids they serve) and they said YES!  Abby and Maddie worked together on making their posters and writing their speech (Abby did the majority of the talking and Maddie said a couple sentences at the end).  There were about 15 other kids running too....  after their speech in front of hundreds of their peers Abby was so touched by the fact that a couple "rough" boys "that like to get in trouble" (in her words) came up to Maddie, looked him in the eye, shook his hand and said "you have my vote Maddie!"  This power team made it past the first round and were on to the panel interview.  During the panel interview, Maddie made everyone laugh as he talked about cheeseburgers and then would look adoringly at Abby and say "Abbyyyyyy!"  Abby shared her heart to lead her house and to to give Maddie an opportunity he wouldn't otherwise have.  They ended up winning House Representative!!!  There are a million facets to this story that I think are so cool, but I will boil it down to this...  It is such an honor to get to play a small part in paving the way for kiddos and adults with special needs, helping the world to see that they matter (BIG TIME), the sky is the limit in terms of what they can achieve when people are willing to invest and believe in them, and that they are such a valuable part of society as they teach the rest of us what it means to love others well.

Abby, Maddie, and Mrs. Patterson (the principal)...  the most "all in", purposeful, and high energy principal EVER!!!

 Abby and Maddie at their first school dance!

Waiting their turn to give their speech...

Speech time...

A random pic someone took during lunch and sent me.  I can only imagine what Maddie is telling Abby :-)

This is how they find out their houses....  spin a wheel!

high fives...

Slide into your house...

Team Amistad!

Then, you get to celebrate with some of your favorite peeps that are also in the Amistad house!  This is Mrs. Curtis, the nurse and precious friend!

Mrs. Rufo (the amazing counselor and precious friend.... Abby has most classes with her daughter and Grace has been in class with her son for the past two years) is also in Amistad, but for some reason I didn't have a pic of them together on color out day.  This pic was from Gold out day for Pediatric Cancer.

Abby is of course still playing lots of soccer and loving it!!!  That is her happy place.  Her team went undefeated and finished first place in the top 06 bracket (they played an age group up).

The kids halloween costumes were my favorite this year because they were each something they truly love...

Andrew was Aragorn from Lord of the Rings (his favorite movie), Grace was Astrid from How to Train a Dragon (her and Andrew are always playing "Dragon Riders" together), and Abby a player from player from League of Their Own (the next best thing to a soccer player and it was the same costume as I wore ;-)

We had another fantastic year at the Gigi's Gala!  This year was made extra sweet because we won a trip to Costa Rica (for 8 people) in the raffle (we still have to pay for plane flights and excursions, but the house that sleep 8 + people is AMAZING)!  What?!?! We never win anything!  It's hard to even imagine David and I getting away for 5 nights (the trip is actually for 6 nights, but there isn't a chance that I can consider 6 nights without hyperventilating... even 5 nights gives me heart palpitations).  Will you please pray that nothing gets in the way of making this trip a reality and that the Lord would just provide and bless every detail that He knows we need?  THANK YOU!!!

My girls... these sweet ladies sat at our table, but we are missing my Mother in Love in this pic :-(

The Gigi's Playhouse Sugar Land Board!

We have had a couple mini birthday celebrations for Andrew so far, but his real birthday is on Nov 26th!  Can't believe my boy is almost 10 years old!

Celebrated a joint birthday for Mrs. Kathy and Andrew!

Andrew got a pocket watch from Mrs. Kathy and Mr. Alan!  Mr. Alan has a matching one!  Andrew hasn't put it down since, he even sleeps with it.

Celebrating a joint birthday with cousin Joe and Andrew!

***We will be running the Snowdrop 55 Hour Relay Race over New Year's again in support of Andrew's Army!!!  We have two teams of 10 runners (where Abby and I will both run about 7 hours or more) and 2 individual runners (David being one of those two solo runners going for 100 miles by themselves).  I put out a challenge where people could submit their t-shirt ideas for this year's race and whoever won would get one of these special shirts.  I couldn't believe how many creative friends we have, there were so many GREAT ideas, but here is the winner!!!

The winner is a mighty prayer warrior of ours, Lauren Thurston! She put SO much thought into every detail of this shirt that I literally cried when I saw it!

FRONT- There are 5 stars for the 5 Rosses, 7 stripes because 7 is a holy number, our anthem, #butGod under the stripes, Fight Like a Ross on one of the stripes, and a gold ribbon for pediatric cancer
SIDE- a military symbol on the sleeve (we love our service men and women), which also represents Down Syndrome (the three arrows pointing outward is a tattoo many families who have kiddos with DS have, as it represents the 3rd copy of the 21st chromosome and always moving forward, setting the bar high for our kids)
BACK- the symbol at the top (a cross with AA in it) represents our trust in the Lord and being a member of Andrew's Army.  This is the symbol Abby created and writes with a sharpie on her wrist before every one of her soccer games.  The 4 logos are our amazing sponsors that unwaveringly support Andrew's Army and Gigi's Playhouse.  They also happen to literally be our favorite restaurants, our favorite place to work out, and overall some of our favorite people on the planet.

On this Thanksgiving Day, I want to tell each of you that we are thanking God for each of you today! Thanking God for connecting our families whether we get to do life together in person or through Facebook/the blog, etc.  Regardless of how our lives intersect, you matter to the Ross family in a big way!

HAPPIEST THANKSGIVING!!!  

So thankful for this crew (my peeps and Papa and KK)!  What a great way to celebrate Thanksgiving!  My favorite part is hearing each person share what they are grateful for...  let me give you a sample from Grace's- "I'm thankful for Bubba being my best friend and not having tummy pain, Sissy for being so sweet and for being good at math, Mommy for doing a great job at work, Daddy for doing a great job at soccer, and Papa and KK for playing babies with me."  She said all this consecutively and without any prompting.  That kid is all kinds of hilarious and sweet all rolled into one! 

"But thanks be to God!  He gives us the the victory through our Lord Jesus Christ!

1 Corinthians 15:57