Saturday, September 16, 2017

Tears of Gratitude and Heart Ache...

As I shared in my previous post, we are rejoicing (BIG TIME) about the opportunity for Andrew to receive PRRT here in Houston and that the Lord provided the funding to do so! However, I have to warn you that if I see you out and about and you ask me how things are going and I burst into tears, don't feel bad or worry, everything is ok I'm just really struggling with the details surrounding Andrew receiving this cutting edge therapy that provides my boy the best chance at life. You see, we just learned that they need to move our originally schedule date of Oct. 3rd because they are trying to work out the scheduling kinks that Harvey caused (many people travel from out of town for treatment at this facility), which means his first round of PRRT could be moved up a week or back a few days. We are praying his appointment gets moved up because I hate to think about him having to wait a second longer not being on any sort of treatment and giving the chance for this dreaded disease to progress. Trusting God's timing is perfect!

That's not the part I'm struggling much with, it's the fact that for 6 days after receiving PRRT Andrew has to basically be quarantined because he will be radioactive.  He really shouldn't be around Grace during that time at all, but if he is, he can't touch her. That hurts my heart because I know it will break both of their hearts, but the worst of it is that the rest of our family needs to stay a meter away from Andrew also. I can't hardly see through my tears as I type this... a momma's heart wants to run in and hold their baby when they aren't feeling well, but I'm not suppose to do that because my own son is dangerous (not by any fault of his own, but because of the very testament that could give him life).  All Andrew wants to do after being at school all day and he's exhausted or in pain is snuggle his mommy and for 6 long days I have to trust that God is going to be the snuggles that he needs. I don't want Andrew to feel like a leper after all, and I know God doesn't either. I keep reminding God that he's only 8 years old, he doesn't deserve this, but God keeps reminding me He knows, He sees, He cares, He has a plan, so trust Him. I will trust Him even though it goes against every fiber of my momma's heart. To give you an idea as to how radioactive Andrew will be, he has to have his own bathroom for six days and flush twice after every time he goes potty because everything that comes out of him is toxic. We aren't allowed to be in a car longer than an hour with him and for some reason they suggest he sits diagonal from the driver. I think our plan for the first couple days when he's most radioactive, and over the weekend where Abby and Grace won't be in school (he obviously can't go to school for 6 days), is for David and Andrew or myself and Andrew to go stay somewhere else (maybe my in-laws) so there won't be as much time that we need to keep Andrew and Grace apart in the day.

We found out this information yesterday, just prior to sitting at dinner and Andrew's pain started to proegress pretty rapidly. We found out the place administering his PRRT need very specific labs ASAP (especially if his date gets moved up). After dinner, at one of our favorite restaurants (Guru Burgers) around 7:00 pm, we decided to head down to the medical center to get Andrew's labs done. We headed that way and by this time he was in excruciating pain, his cheeks were red (always a sign of the pain being BAD, and we are in for a good 5-6 hours of pain), and before long he began throwing up in the car (that happens when his pain is at its worst, he throws up from the pain).  We were in the medical center, but he had thrown up all over himself.  We stopped at a Target and bought him new clothes, Clorox wipes, etc and after getting him cleaned up, headed to his blooddraw. We arrived home at around 10:00 pm and Andrew was finally able to go to sleep.  Yesterday was just a rough day all around, but God's mercies were new (just like He promises) this morning and he woke up and even had a play date this morning.

On our way to dinner last night prior to tummy pain...

Waiting for blood draw after a very eventful night :-(

I still have no idea how we are going to weather those 6 days, but we are praying about it (for wisdom as to how to make the best of it for everyone) and hopeful that y'all will have some suggestions for us too ;-). So far, I'm thinking about lots of movies, FaceTime play dates, and some new toys. I'm also assuming Andrew will be really exhausted, so I'm praying he will sleep a lot to pass time.

Some have asked what PRRT is exactly. The best (and simplest) explanation I have heard is from Dr. Liu in Denver (what a blessing he has been). The Gallium 68 scan we went to Iowa for basically sent radioactive material into Andrew's body that act as a drone. That drone is attracted to tumors with somatostatin receptors, therefore the scan lights up in areas where the drone has found receptors to attach. Praise the Lord, Andrew's scan lit up bright, meaning he has the necessary receptors for PRRT. PRRT is a treatment that takes the same drone from the Gallium 68 scan and basically attaches a bomb to it, so when that drone attaches to the receptors, the bomb blows up/radiates the tumor (its very targeted radiation I guess).  I think I mentioned before that this treatment can shrink tumors between 10-80%. We are on our knees asking God to shrink these tumors like crazy so that we can try again at surgery and remove as many as possible.  We are also praying like crazy that PRRT will reduce Andrew's pain and keep his cancer "stable" (not growing) for a looooong time (or forever would be good, since our God is a miracle working God and can do that if He sees fit). Prior to and during the administration of PRRT, he will get amino acids that are suppose to protect his kidney's during the therapy.  The goal is to do 4 rounds of PRRT (and then 2 more if needed and if his body can tolerate it), so please join us in praying that he can easily complete the full 4 rounds (that he doesn't have to stop treatment because of toxicity or that his disease doesn't progress despite the treatment).

Lastly, we were suppose to go on Andrew's Make-a-Wish trip over Thanksgiving (a Western Caribbean cruise), however that would be a few days after his second round of PRRT, in which case we originally didn't want him to feel crappy for his trip, but now we know there is no way we can possibly go because he will likely still be radioactive on what would have been the first day or two of our trip.  Lord willing, we plan to reschedule his Make-a-Wish trip for sometime in Spring 2018.

Our families favorite song is "Impossible" by Sidewalk Prophets. The chorus of that song is our anthem right now "when my hope is lost and my strength is gone, He is rising up, we will overcome!"  #butGod. #hopeon. #wewillovercome

Friday, September 15, 2017

He Has Made a Way...

Y'all, there are few things I've been more excited about since Andrew's cancer diagnosis almost 7 months ago (read on for more details), so you know what that means...  the enemy is fired up and has been working overtime!  The enemy may take us out at the knees and try to drain every last ounce of energy I have in my body, but we will hope on and rejoice in the newest plan God has revealed for our sweet boy.  Long story short (as short as my long winded self can make it that is ;-), Andrew started a drug called Afinitor shortly after surgery.  The reason we went with this drug for treatment is because we were trying to buy time until PRRT was approved by the FDA or at least until University of Iowa was approved to enroll pediatric patients in their study protocol.  We had hoped they would get the study approved within 3 months (just enough time for Andrew to complete the 3 cycles of Afinitor) from Andrew's surgery, however it doesn't look like that approval will come as soon as we had hoped.  Meanwhile, David and I both were lacking peace that Afinitor was having any meaningful impact on Andrew's cancer, since his pain was continuing to increase and this road was starting to feel all too framilar.  Remember, right after Andrew was diagnosed we, along with his team of Dr's decided to go with a big gun up front, which was chemo (this chemo is arguably the most potent treatment option available for his rare type of cancer) and it didn't touch his tumors, in fact they continued to grow despite 3 rounds of chemo.

David and I began praying that God would make it clear if we should throw in the towel early on the Afinitor treatment and pursue PRRT.  Initially, we felt like that idea was borderline crazy because we know you need to give these different treatment regimens at least 3 cycles to demonstrate if they will be effective or not, we weren't sure where we could have PRRT done, and what sort of cost would be required. As we began praying about it, David reached out to the place here in Houston that offers PRRT, despite the fact that it's not FDA approved yet (thanks to the Right to Try law in Texas, which allows you to try non-FDA approved treatments as compassionate use/if you've tried other therapies and failed), you just have to pay full cash for them up front.  Initially, they told us "no" they wouldn't be able to treat Andrew because they had never treated a child before.  This time they said they had since treated a 10 year old child (with a different type of cancer) and would be willing to treat Andrew (praise the Lord).  We gathered all necessary information, figuring we would call them back if/when Andrew completed his 3 cycles of Afinitor and if we found out it wasn't working.  Our hearts were still unsettled about waiting another 2 months (at least) to start PRRT, in the event Afintor wasn't working, so we continued to pray, asking God to make His will super clear and to give us the courage to say "yes, Lord!"  Then, this past weekend happened where we were faced with the possibility that Andrew could possibly have a new met (tumor) on his lungs (we are still praying it's just pneumonia).  David and I both felt like this experience was the green light we needed from the Lord to move forward with PRRT (that was Saturday).

On Monday evening, I was sitting at Abby's soccer practice when I got a phone call from a man who I had spoken with once before, early on when Andrew was first diagnosed.  This man's wife has the same type of cancer as Andrew and he is a wealth of information.... like, he knows more than most Dr's we talk to, not to mention he is a godly man.  He randomly (or not so randomly ;-) called me on Monday to discuss Andrew's treatment and shared that based on the data, the experience of those they know in the Neuroendocrine Cancer community, and what the Lord has put on his heart that he thought Andrew needed PRRT sooner than later.  I got off of the phone with this sweet man feeling hopeful and encouraged, certain we were doing the right thing in abandoning ship on Afinitor and moving forward with PRRT.  You see, since Andrew's cancer is so rare (especially in children) the Dr's are playing a guessing game too as to what treatment to try and when, so we are very much on the front lines (as his parents) of making decisions about his care, so our prayer is that we would never get out ahead of God, but that He would guide and lead our every step.  He has clearly done that and as further evidence of His faithfulness, He used SO many of you to generously fundraise and donate to our family during this incredibly hard season and wouldn't you know that the exact amount we need to pay for 4 rounds of PRRT is what y'all have graciously helped us raise to date... almost to the dollar!!!  In the event Andrew's body can tolerate all 4 rounds of PRRT and he still needs more treatment (it is not curative, only 1% of people are cured, but it can cause 10-80% regression of the tumor burden) he may be eligible to receive two additional rounds 6 months after the completion of his 4th round (which would be August of 2018).  While the prospect of paying for two additional rounds of treatment sounds a bit overwhelming, we trust that if God calls us to it, He will see us through it and provide.

Deploying all prayer warriors for some huge prayer requests- We have had to increase the dose of one of Andrew's heavy duty pain meds called methadone (you know the drug they give people that are coming off of heroin?  yeah, that one :-/) and we are noticing that it has had some unsettling side effects like TERRIBLE night terrors (he wakes up crying or screaming, begging someone to stop hurting him, etc and it goes on multiple times throughout the night), sometimes causing these nightmares continue into when he is awake (more like a hallucination), and just overall making him feel crappy (dizzy, super tired, and just "not right").  We have backed down on the dose of that pain medication, so please pray that we are able to control his pain at the lower dose.  Please also pray that these 3 weeks that he is off therapy (to address his cancer, not his pain) prior to PRRT, the cancer does not progress and that the spot on his lung is not a new met.  Lastly,  will you please pray God would unleash His power and allow PRRT to work better than anyone has ever seen or imaged possible and that He would get all the glory?!?! #BUTGOD  #HOPEON

Catching a couple zzzz's at Grace's swim lesson.  This little sweetie could seriously fall asleep anywhere, but he keeps pushing through!

PRAISE...  The kids are LOVING school so far, praise the Lord!!!

Family handshake before heading to the first day of school...

Bubba's turn...

THANK YOU for faithfully praying and carrying us through this journey! 

Saturday, September 9, 2017

ER or bust...

For our non Facebook troops, here is an update on our very eventful day today...

"Boy does God have a sense of humor! Well... we are leaving the ER with Andrew, has a spot on his lung that we are hoping is pneumonia (likely because he has a lot of mucus and a cough) and not a new met (tumor on his lung), so we are starting him on antibiotics. Meanwhile, a nurse came to the house today to set up our home INR monitor (it monitors Grace's warfarin/blood thinner levels) and her number was, wait for it.... 6.0! That's crazy high and puts her at a high risk for internal bleeding. Therefore she has to come to the ER to get vitamin k (it reverses the effects of warfarin) and will likely get admitted until her INR is within range. Never a dull moment! Our life is seriously comical, not sure if we should laugh or cry.  That's when Abby reminded me that she looks at our life and thinks "God really trusts us to give us this journey." Amen sister... onward and upward. He hasn't fallin off His throne, so we will hope on and hi five each other as I leave the ER with Andrew (and Abby) and David walks into the ER with Grace. Will you please pray the spot on Andrew's lung is not cancer (and indeed pneumonia) and that Grace's INR gets into range quickly and without any events? Please also pray nobody has to miss their first day of school. Thank you!!!  We covet your prayers!"

"UPDATE- Giant thanks to everyone that is praying for us! This has been a loooong day, but praise the Lord Grace and David just got home (10:30 pm) from the hospital. Her INR was 4.4 at the hospital, so she didn't have to be admitted 🙌🏻.  We will skip her dose tomorrow and go for another blood draw on Monday. As for Andrew, he will be on antibiotics for 10 days and then we will re X-ray to see if the spot on his lungs has gone away. Please pray the spot goes away completely! Please also pray that God makes His will clear as to whether we should abandon ship on this chemo like medication he is currently on (we just don't feel like there is any sign it is working) and move toward doing PRRT here in Houston.  They agreed to treat him here versus waiting for a protocol to open in Iowa, we just have to pay cash for the treatment (insurance will likely not cover it since it's not FDA approved yet). We just want to go wherever the Lord leads and not get ahead of Him. This journey is crazy... God is not safe (He never seems to lead us down the paved, well lit road, that seems ideal to us), but He is good! Thank you for being faithful members of our army! 💚💙💛"

Monday, September 4, 2017

Living in the eye of the storm!

Well the past 2 weeks have been a whirl wind...  literally!

Well hurricane Harvey came in with a vengeance as it made landfall in South Texas dumping 51+ inches of rain (that's what we typically get in an entire year).  The first two nights we got almost no sleep because our phone alerts kept going off with tornado warnings, so we had the kids sheltering in place with us on the floor of our bedroom.  The next couple days were filled with prayers that the rain would stop, even if for just a short period of time, and give our poor city a much needed break.  Our neighborhood was on a voluntary evacuation, so we had to decide whether to stay put and ride it out or evacuate.  After much prayer, evacuating at that point almost seemed more dangerous than staying because most streets (including many in our neighborhood) were closed/impassable.  It was a difficult decision for every family, but our decision had substantial ramifications to consider.  We had to take into account the fact that we have two medically fragile children who can't go without their medication, if we were trapped for an extended period of time (beyond what we had already prepared for), need to have access to a hospital if they were to get ill, and can't afford to get overheated if we lost power (Andrew has had a hard time regulating his body temp lately.  When he gets over heated it takes him all day to actually cool down).  Also, we have a one story house, so we needed a two story option in the event our house took on water.  Thanks to our dear friends who recently moved, we had a solid plan B in place.  Their house is down the street from ours, so we blew up mattresses in case we needed to float our stuff down there.  Their house is vacant, has two stories and a generator, so we could have stayed there if our house flooded from the hurricane itself or the giant and powerful Brazos river (which we live right next to) breaching the levee.  We moved as much of our house as possible off the floor, in case of flooding, and everytime I pictured what we would evacuate with, if we did flood, all I could picture was David and I, carrying our three kids, two dogs and Andrew and Grace's bag of medication.  My biggest fear (besides our safety of course) was what would happen if Andrew was without the 20+ pills he takes a day, many of which are heavy duty pain meds that keep him from being in agonizing pain.  By God's grace, our street didn't flood at all; however, just around the corner from our house the water was waste deep, which meant we were safe, but stuck in our neighborhood for 4 days.  SO many others were not as fortunate and have experienced great devastation.  Our hearts are broken yet hopeful for them!

The Brazos River is on the left and that little patch of grass (our levee) is what is protecting our neighborhood from becoming one with the Brazos :-/

This was down the street from our house...

This was our street...

This was one of the streets where I work :-(

My mom happened to be in town visiting that weekend from California, so her trip was obviously extended since we were stuck and most roads were impassable.  Once the water in our neighborhood receded enough to get out, we drove my mom to Austin so she could fly home, since our Houston airports were closed.  We made a mini family vacation out of our trip to Austin, which was a huge blessing.  We went to an indoor bounce house/playscape type area and took a tour of some pretty amazing caverns.  We love Austin because so many of their restaurants, etc remind us of home, all the way down to their convenience stores...  they have 7 Elevens!  Back to the caverns, it was a mile and a half(ish) tour that Andrew especially absolutely LOVED.

Inside the cavern...

At one point, the tour guide pointed out an area where they do Wild Tours (this is a tour that lasts many hours and requires you to climb through a bunch of tiny crawl spaces, etc).  I could barely look over the edge at the tiny crawl space that he was referencing.  He said that you have to be 13 years old or older for that tour, to which Andrew excitedly exclaimed "Mommy, when I'm 13, will you do this tour with me?"  I told him I would be his biggest cheerleader on that tour, but that was a tour better suited for daddy (I'm a pretty daring person, but I'm only mildly claustrophobic and there is NO WAY I could do that tour without freaking out and then how could I help my boy through it).  He asked David if he would do it with him and David of course said yes.  Needless to say, I spent the rest of the tour talking to God, or maybe begging God is more accurate, to please let Andrew make it to 13 years old and be healthy enough to do that tour!  These are the types of battles that wage war in my mind daily.  It is at that point I have to remind myself of God's perfect plan and hope on!

As I hope many of you saw on the news, Harvey was devastating, but it was no match for Texans (and the countless others who came from across the country to help and are now considered Texans as well).  I have to say that I'm not surprised a bit by the sacrificial love that people have shown and continue to show to complete strangers because we have been on the receiving end of that love and commitment many times since Grace was born and even more so since Andrew's diagnosis.  However, it was on a scale of epic proportion.  I don't think our nation has ever seen so much personal sacrifice (from one's safety, time, energy, property, and above all their lives) from first responders and volunteers alike.  What a beautiful picture of what it means to be the hands and feet of Jesus from the initial rescues and to the clean up that is far from over.  Once we got my mom taken care of, we couldn't wait to serve our community.  Words can't express the joy we experienced serving together as a family (our own family and our church family, The Sanctuary Fellowship) all day Saturday and Sunday.  As much as Andrew loves serving, he knows his limitations and had to forgo the opportunity to serve a city about 40 minutes from our house that was devastated by the storm.  They not only had many feet of water in their homes, but they continue to be without power or water.  David helped muck houses, while Abby and I helped unload an 18 wheeler full of supplies, set up a distribution center (in the parking lot of a strip center), and love on a multitude of people that came through in desperate need of everything from water and food to diapers.  This little girl of mine literally only sat down for 5 minutes over 5 hours of running around serving in the HOT Texas heat and that's only because I insisted that she get in the shade and hydrate. It was impossible to get her to take a break and she was begging to help a little longer when we had to leave that evening because we needed to get Andrew and Grace from my parents.  The Lord used her and her 10 years of experience in this world to minister to me a lot the past couple weeks.

Best Sunday afternoon... serving alongside our amazing church family was such a joy and honor! 

The 18 wheeler full of supplies for Wharton!

Love this pic of my two favorite #17 soccer players working together on an assembly line used to unload the truck!

6 hours into serving a sweet community and still smiling!  This kid inspires me!

Just some of what was pulled out of the house David was working on...

This was Saturday when Abby and I perfected our personal shopper skills in preparation for Sunday!

As I look back on the past week, I'm surprised about the level of peace we had about it all.  I guess I shouldn't be surprised because the Bible talks about that type of peace, you know the type that surpasses comprehension?  As I thanked God for His peace and protection, I realized that maybe the reason we had a measure of peace during Harvey is because we live daily in the storm these days.  If you ask anyone in the Houston area to describe what they experienced during Harvey, my guess is they would recount feelings of fear, uncertainty, being desperate for information that can guide their decision making in keeping their family safe, camaraderie with those they battled through Harvey with, exhaustion, more exhaustion, concern for what the next hours or days would bring, feeling out of control, the need for the support of family and friends, and so much more.  Once Harvey moved on, the river crested, and we could all begin the process of cleaning up and rebuilding, I would hear or read people talking about their new found ability to take a sigh of relief and get some rest.  I wondered why I didn't experience those same feelings (don't get me wrong, I'm SUPER grateful we were safe and our house was dry and continue to praise the Lord for it) and that's when it hit me; when you are battling for your life or the life of a loved one (especially your child), you literally move from one battle field to another.  No time to exhale because cancer doesn't take a break just because Harvey is in town, cancer doesn't give you time to clean up the mess, take a little vacation, and then resume the battle when you are rested.  No, cancer rages on without regard for anything or anyone else.  I pray my feeble attempt at trying to paint a picture for you about what the life of a family battling cancer, especially pediatric cancer, looks like will help you get into the mind of the far too many children and their families who are in the fight of their lives as you read this.
September is childhood cancer awareness month.  Will you please join us in helping raise awareness of the unmet need for additional funding for pediatric cancer research?  Every two minutes, a child is diagnosed with cancer.  10,000 children in the US under the age of 15 will get a cancer diagnosis.  1 in 5 children with cancer will not survive.  For children who survive childhood cancer, the battle is never over.  Currently, only 4% of cancer research funding goes to researching new therapies for children.  Will you go gold in September for childhood cancer by changing your profile picture on Facebook, donating to a foundation that raises and donates all its money to pediatric cancer research (our favorite foundation is Triumph Over Kid Cancer.  You can learn more about this amazing organization at, go out of your way to encourage/lean in to a family you know that is in the thick of the battle (y'all have done such an awesome job of leaning into us, please don't stop... we need you), pray like crazy for healing, etc.....  just "do that one thing", that one thing that will make a difference no matter how big or small!

-The truth is CANCER SUCKS (that word might offend some, but let's be honest, that word is mild compared to how I really feel about this dreaded disease), but GOD IS WAY BIGGER than cancer (or anything else you might be going through)!  #butGod

-"She holds onto hope for God is forever faithful."  1 Corinthians 1:9  #Hopeon

-"Hope is a verb with sleeves rolled up!"  #Dothatonething

****Update on Andrew and prayer request- Andrew's last blood draw revealed that his liver enzymes are back to a crazy high level (like 10x what they should be).  Will you please pray that his next blood draw (this Wednesday) reveals labs that look totally normal?  I'm not sure what we will have to do if they are still high, but we can't afford for his liver to be compromised because he is in no way a candidate for a new one.  Please also pray we are able to continue to keep Andrew's tummy pain under control.  Here is a glimpse of what our morning looked like today... tummy pain is brutal!
Grace has a blood draw on Wednesday too, please pray her Warfarin levels are within the right range and stay there.  THANK YOU!!!

How could I forget...  we also celebrated Grace's 5th birthday last week...

And David's too!

Praying for and praising God for each of you daily!  Thank you for standing by us always!

Wednesday, August 16, 2017

Hope on!

Precious Andrew’s Army, it’s been a few weeks since I have posted on the blog, for which I apologize.  I just haven’t found even a few seconds to do so.  This past weekend, David and I went to California for David’s 20 year high school reunion.  It just so happens that some of my very best friends went to high school with David (or a high school near by).  We had such a blast getting away just us two for 48 hours (I just love time with my man), spending time in our old stomping grounds that will always feel like home, and spending time with dear friends.  

LOVE these girls!  Check out the perfect shirt they had made for me.  It says #But God on the front and all different titles from various blog posts on the back!

It's a tradition...  lunch on the pier at Ruby's!

Dinner and lots of laughs with some dear friends!

My hot date ;-)

Two out of three of my Cali besties!  

The guys!

My Mother and Father in Love that held down the fort while we were gone!

Andrew started Afinitor three weeks ago now and so far so good, in term of its physical toll on Andrew.  While he is a little more tired and has to do a super nasty mouth wash 3-4 times a day to prevent awful canker sores, he’s doing good!  He is still joyful and full of energy (energy that can only be explained by God because there is a giant war going on in his body).  He got his monthly shot in his butt this week and despite it being very painful he was still very brave.  The shot has to go deep into the muscle (it’s a 19 gauge... very thick needle and the medication is very viscous, so it doesn't go in fast and it burns going in).  The shot is supposed to help with pain and (hopefully) halt or slow the progression of his cancer.  We won't know until early October if the Afinitor is working (it isn’t easy waiting 3 months to see if a particular medication is even touching the cancer) because that is when he will get another scan.  We are still waiting to hear back from Iowa as to if the PRRT trial is open and available to Andrew.  Without the power of the living God being unleashed through these medications/treatments it will all be in vain, so will you please join us in praying that the Lord would use these medications/treatments to wreak havoc on Andrew’s cancer and shut it down?

Love this picture!  What would you guess they are watching?

Grace got to return to her happy (Gigi's Playhouse) place now that she is past her sternal precaution from surgery which includes staying away from germs.  The lesson was on dinosaurs.  They are digging for dinosaur bones of course!

God has taught me a lot over the past couple weeks, as to how I’m suppose to endure this journey, because one thing that is difficult to wrap my mind around is that there is a high likelihood that Andrew will battle this disease for the rest of his life.  What I mean by that is, Neuroendocrine Tumor cancer is very different than many other cancers.  With many cancers you are diagnosed, there is a protocol to treat that you start immediately, and you can hope that at a certain point and time (at the conclusion of the protocol) that you are NED (no evidence of disease) and you stay that way.  Andrew’s type of cancer doesn’t come with a protocol and has no cure to date, which means the strategy is to knock the cancer down as long as possible and when it rears its ugly head again, you try and knock it down again, and again, and again.  There aren’t many treatment options (although there has been a handful of new treatments over the past 5 years, compared to the one or two that were available for the previous 30 years), so the other hope is that your cancer will respond to the available treatments because the options are limited.  There are Neuroendocrine Tumor patients that have received the news that they are NED; however, at this point the cancer returns 100% of the time.  All that to say, if the Lord allows us to hang on to our boy for a long time we will likely be battling cancer the entire time; the cancer journey will likely not end for us while Andrew has an earthly body.  Trust me when I tell you, we have full confidence and hope that God can miraculously heal our boy and that is exactly what we are praying for and to be honest, we don't even care how He does it (cast out cancer with a mere command, after all He created the world by just speaking it into being, so that would be nothing for Him, or if he uses Drs and medications).  Here is where the enemy gets busy, speaking lies into my mind…  lies like “He can heal Andrew, but He probably won’t” or as he reminds me of how “bad” his cancer is and the fact that so far the chemo we tried hasn’t worked, surgery didn’t go as we had hoped and prayed for “so it’s a sign of what’s to come, nothing is going to work.”  Throughout this journey, which began on Feb 22nd of this year, I have asked God to give me some sort of sign as to where we are going, to prepare my heart for what’s to come, and there have been a couple of times that I felt like He spoke very clearly to me, but then I find myself questioning Him “God was that really from you or was that something I dreamed up”…  you know the doubt or questions for clarity.  A couple weeks ago, I was going through a moment or two or three of brokenness (periodically, when I find myself overcome with sadness, frustration, or fear I will have to wait until I have time alone, which is most often in my car, when I can listen to my playlist of songs that allow me to experience brokenness and weep and as the playlist goes on be built up with truth and hope) and I was pleading with God, asking Him to speak to me and help me see where we were headed.  In His wisdom and tenderness He very clearly told me to just trust Him.  At first that answer felt too short and simple, after all that’s exactly what He tells His people all throughout scripture.  Maybe I was hoping for something “new,” but that is when God tenderly and very accurately reminded me that even if He told me what was ahead I would still have questions, I would still ask Him if I had heard Him right, to clarify, etc, so His answer of “trust me” was exactly what I needed to be reminded.  It was in that moment I decided to hope on, hope for a long life for Andrew (if He has other plans for Andrew’s future His grace will be sufficient for that time), hope on until God says otherwise. I will trust Him.  You know those are fighting words for the enemy, so the temptation bombs of fear will continue to fly with increased accuracy, so will you please pray that I/we can put on our armor for battle and hold on to hope, despite the whizzing of bombs past our heads and the smell of smoke in the air?

This about sums it up!

Praying God's favor over each of you!  Praying you know how much God loves you and how much the Ross family loves you too!!!

Wednesday, August 2, 2017

Regional Champs

I intended to update the blog this weekend, but we ended up going out of town at the last minute and didn't get home until late Sunday night.  This weekend was a blast, in that at the last minute Abby got a chance to play in a 3v3 State Championship Tournament because one of the sweet girls on the team broke her arm a couple days before the tournament.  Abby was super excited to get to play with some of her new teammates and we were excited to get out of town as a family to do something that was not centered around Dr's appointments, surgery, heart defects, or cancer...  we got to have a pretty "normal" family weekend!  We laughed a lot, got to meet some of Abby's new teammates and their families (who couldn't have been sweeter), and the cherry on the top was that their team won the tournament!!!

Andrew and Grace were the team mascots at Abby's tournament this weekend!

-Abby had her appointment with the spine specialist yesterday and God showed off big time...  the doctor said Abby's back is totally fine!  He said Abby does have a sway back, but it's just the way she was made (just like her Daddy's body) and not a problem.  Giant praises for a piece of good news!!!

-Andrew started his new chemo treatment last Monday and so far so good in terms of side effects (we just don't know if it's working yet).  He did get his first canker sore yesterday, so we need to do a better job of using his steroid mouth wash (it's hard because he hates it) multiple times a day.  His pain has been pretty well managed with only a few episodes of breakthrough/really bad pain, which is another huge praise!!!  Will you please pray the mouth sores don't get worse because that is what often times causes patients to have to take a break from the medication because it can become unbearable.  Please also pray that we can continue to keep his pain well controlled and even more than that, we would see some improvement in his pain because the treatment is working.  That would be crazy awesome.

I was pretty defeated after our appointment with Andrew's Oncologist here in Texas last week because he seemed to lack hope.  God reminded me that I shouldn't be surprised he doesn't share in the same level of hope we have because his hope isn't in Christ.  We are going to hope on with crazy big hope because we serve a God that is bigger than our definition of whatever crazy hope is.  As it says in scripture... to Him who can do exceedingly, abundantly, beyond anything we can think or imagine, that is Who we are placing our hope in!  When I see, read, or hear y'all share how you are hoping on with us, it is water to my parched soul, so thank you and please continue to join us in hoping on!  #butGod

At Andrew's last blood draw, his liver enzymes were 10x the upper limit of normal :-/, so that is one of the reasons we had to tinker with his pain meds last week in an effort to pull back on the use of Tylenol.  Please pray his constant use of Tylenol was the cause of his elevated liver enzymes or that it was just an isolated incident on this lab draw, otherwise this could be a sign of his liver function being impacted by all of the lesions in his liver. **** Just got lab results back and another HUGE praise is in order...  his liver enzymes are normal!!!

Any time Grace tries to snuggle the dogs she asks us to take a picture

Last week, David and the kids went out to my sister-in-law's house in the "country" and the kids got to enjoy driving ATV's and feeding the cows

We hope and pray you all have an awesome, God-honoring, Spirit-filled week!