Sunday, May 7, 2017

Finally made it to Iowa...

Where do I even begin....  How about with the one thing that I know for certain?  God is faithful even when it's hard and things don't make sense.  He will make a way where there is no way.  He hears all of OUR prayers and we literally can feel your prayers!  And that's just the tip of the iceberg when considering the awesomeness of the God we serve.  Here is a brief update on this week's adventures and an adventure it has been...

-Our trip to Iowa did not start out the way we had hoped, David wasn't able to join us in Iowa because Grace was sick, however, my mother-in-love did a great job as a stand in husband!  Our arrival at the gate at Southwest Airlines was another giant blessing and demonstration of a group of people going above and beyond for their passengers.  We walked up to the gate to see some of Andrew's Army waiting to greet us; this on the heels of the incredible welcome they gave us last week on our way to Denver (we got to tour the cockpit and spend time with our new favorite pilot and co-pilot).  Make that two weeks in a row that Southwest blessed our socks off (THANK YOU AMBER)!!!

So, our flight was delayed on Tuesday night, therefore we found ourselves with an almost 5 hour layover in St. Louis.  It was 10:30 and we were all exhausted.  I had promised the kids they could get an ice cream or Annie's Pretzels after they completed some of their homework in the airport.  As we walked toward the edible reward they had been eagerly waiting for we realized everything was closed (mommy fail!!!).  Dunkin Donuts was closed, but still willing to sell us some donuts.  As we approached the Dunkin Donuts counter, I noticed a guy (a customer) praying with the staff, so I waited behind him until he was done.  As he walked away I told him that I love that he prayed with the staff at which point he noticed my shirt that said "faith can move mountains" and commented on it.  Before I knew it we were talking about why we were headed to Iowa and spent the next 30 minutes praying together.  This sweet man, I now know as Eric, prayed over all of us and passionately reminded Andrew about God's character, power, might, and love for him.  Before we knew it our plane was boarding, so we had to quickly say good bye to our new friend, but walked away with a sense that we had a Divine appointment which set the tone for our trip.
-Our meeting with the Surgeon the next day went great, in the sense that he was amazing in the way he interacted with Andrew and spent time talking through all of the different surgical and treatment options with me, never making me feel the least bit rushed (despite the fact he had patients lined up to see him still).  He explained that they believe removing the primary source prior to PRRT treatment, etc is imperative.  He didn't mince words when explaining the complexity and risk associated with trying to remove the primary tumor and the lymph nodes, but I definitely got the sense that he would do his best to get every source of cancer despite it being extremely tricky and labor intensive and would only pull out early if things got too hairy in there and it was too risky.
-We finally had a chance to meet with the Pediatric Oncologist who we had been waiting FOREVER to hear back from and I can say, despite the frustration of poor communication, it was worth the wait.  She too did an amazing job of connecting with Andrew and making him part of the discussion.  Also, she talked me through all of my questions and concerns and helped us come up with a plan in terms of next steps.

Dr's appointments are always better with your bestie in tow!

-Next we had the scan!

Getting injected with the radioactive dye in preparation for the scan...

-Meanwhile, we learned that at Grace's echo she now has moderate regurgitation of her mitral valve, in addition to fluid on her lungs from being sick.  They admitted her to the hospital for IV lasix and to monitor her.  Her Dr here doesn't think the regurgitation is related to her illness; therefore, we are talking about possibly replacing her valve sometime in the next couple months (still waiting to hear back from her team in Boston with the plan).

-Highlight of our trip was getting to see family!  The kids got to play with their 2nd cousins and we all shared a lot of laughs.  What a special treat to be receiving treatment in the same city as some super special family members!

Fun flying game at the Children's Hospital in Iowa City!

Beanboozal fun!

For the record, the barf jelly bean tastes just like barf! YUCK!!!

Even the Grandma's joined in the fun...

And we may have been converted to Hawkeye fans!

Thank you for being such amazing hosts Aunt Kathy and Jules, we are so grateful for y'all! 

-We landed back in Houston, went straight to the hospital where Grace had just been discharged, so we met David outside of the hospital and traded kiddos...  we picked up Grace and gave him Andrew, since Andrew needed to get platelets.  His platelets were lower than they have ever been before on Wednesday and I noticed petechia (red dots under the skin) all over his body during our layover on Friday, so we called his team and they said we needed to bring him in.  David and Andrew arrived at home at almost 11:00 pm on Friday and we have all been under the same roof since then!

Here is our 5 minute reunion and hand off of kiddos outside of TCH!

***I got a call from the oncologist in Iowa on Friday evening with the results from the scan...
IT LIT UP!!!!!!  This means Andrew is a candidate for the treatment I've mentioned previously called PRRT (it is not FDA approved, so currently only available in Europe in terms of being able to treat a child).  PRRT is basically like attaching a radioactive bomb to a drone that is attracted to/seeks out receptors on the tumors.  The drone takes the radioactive material to the tumor and injures/kills it.  The fact that his scan lit up means that he has the receptors on his tumors to attract the drone.  I hope that makes sense.  Let's stop here and PRAISE THE LORD big time!!!!  Thank you Jesus for answered prayers.  The Dr also said they are sort of perplexed about the primary tumor and lymph nodes.  They are having a hard time telling on the scan, MRI, and CT scan if the tumor and lymph nodes are all growing on top of each other, so it's hard to see the pancreas tumor or if the tumor is much smaller than what was previously thought and it was being hidden by the lymph node.

HUGE PRAYER REQUEST- please pray it's the latter, that the tumor is much smaller than they originally thought and it can be taken out without the need for a whipple.  The Whipple procedure (pancreatoduodenectomy) is a complex operation to remove part of the pancreas, part of the small intestine, and the gallbladder.  We know the removal of the lymph nodes will be very risky business in itself, so the mere prospect that we may be able to avoid the whipple is a gigantic blessing!  Will you please, please, please, pray this is the case?!?!  The oncologist talked about the possibility that they may want to do an ultrasound guided endoscopy where they snake a line through his intestines and into the pancreas to get a tissue sample of the pancreatic tumor.  The goal would be to compare the pancreatic tumor with the liver tumor and get a better look at the size, shape, and location of the pancreatic tumor.  This procedure would be done in the OR (verses outpatient, like most endoscopies) in Iowa.  
-Andrew's team (surgeon, oncologist, nuclear medicine Dr, etc) are meeting tomorrow (Monday) to discuss the next steps.  Will you please pray for supernatural hope, wisdom, and skill for each Dr weighing in on Andrew's care and that they would come up with the perfect plan.  
-We are hoping to hear back from Grace's team in Boston soon as to when and if she needs her valve replaced.  Will you please pray for supernatural hope, wisdom, and skill for them too?
-Please also pray for all of the logistics surrounding the reality that two out of three of our kiddos need major surgery in two different states, neither of which are in Texas.  

Ephesians 3:20-21New King James Version (NKJV)

20 Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, 21 to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.


Thursday, April 27, 2017

Praying the Rain Doesn't Turn into Hail...

(Warning: This is David providing a very quick update)!
For those of you who are not on Facebook, here is an update that Kristi posted from Denver.  We will certainly describe more later, but we were up at 3:00am to catch our flight this morning and are ready to crash:
         Our time in Denver has been amazing so far! Our appointment with Dr. Liu was a huge blessing as he couldn't have been more kind, a wealth of knowledge, and committed to helping us make the best treatment decisions for our boy. He gave us SO much to think about (more importantly pray about), much of which could change the entire direction we thought we were headed (at least in the immediate future). The deciding factor on the next step will be the results of the Gallium 68 scan Andrew is having next week in Iowa. Will you please pray for two giant prayer requests? 1) that Andrew's scan next week lights up bright (this would indicate he has the necessary receptors for a new treatment (not FDA approved here in the states yet, but very effective) and 2) that the team in Iowa would have wisdom as to what Andrew's treatment plan should look like?  We just want to do God's will!

****We have an URGENT PRAYER REQUEST in the midst of everything.  We arrived home from the airport to see Grace arriving home from school four hours early.  Grace went to the nurse at school with a little bit of a cough and she ended up having a temperature, but Grace thought that since she was in the nurse's office she should go ahead and vomit as well.  We let Grace nap a little bit and then decided to take her to the pediatrician.  Grace's pediatrician heard some crackling in her lungs when she examined her, so she went ahead and prescribed her an antibiotic, in the event she has a bacterial infection.  This might seem extreme for most kids, but since Grace has a prosthetic valve in her heart, the cardiologists have always informed us that a bacterial infection would be really bad for the type of valve Grace has; therefore, at any sign of infection we always go ahead and get her on an antibiotic just to be safe.  To be honest, this is rather normal for Grace to get this once or twice a year, it always begins with her having a runny nose, then she slowly gets a cough and we begin giving her breathing treatments, the cough continues to linger and we take Grace to the doctor.  The doctor will hear crackling in her lungs and she will prescribe an antibiotic and send us for a chest x-ray.  The x-ray usually reveals that Grace has pneumonia and we try to let her battle it out as long as possible at home, while we watch her oxygen saturations.  When her oxygen stats fall below 90% we usually take Grace to the ER and she gets admitted to the hospital and put on oxygen for about 4 days and then we get discharged.  This has always been the process for the first 3 years of her life.  In the last year and a half, Grace has gotten a little stronger and she has been able to fight some of her bouts with pneumonia from home, without having to go to the hospital.  Here is our prayer request for this situation:  1) For God to help Grace fight this illness from home and not need to go to the hospital.  Mind you, four of us are supposed to be traveling to Iowa on Tuesday and Grace was going to be staying home with my mom; however, if Grace needs to go into the hospital, that would really alter plans quite a bit.  Therefore, we are really hoping for Grace to improve quickly and that everything will work out for us to be able to go to Iowa together as a family (Kristi and I and the big kids).  If Grace does not improve quickly, then I will be heading to the hospital with Grace and Kristi will be flying without me to Iowa.  I'm sure if Kristi were writing this, it would be much more colorful and full of expression at this point because that possibility is a little overwhelming to think about.  

While we were only gone for 2.5 days and 2 nights in Denver, these two had lots of tears because they missed each other so much.  You would have thought they had been separated for 2 months.  Here are some reunion photos from today.  Kristi didn't have her phone on her for the actual reunion, but she caught these as they were getting in the car after picking Abby up early from school.

Wednesday, April 19, 2017

Finally, Iowa bound

Not a lot to update accept that we are likely traveling to Iowa the week after we go to Denver.  Yes, we FINALLY heard back from Iowa, but only because we have a family member who has a direct connection with the director of the Cancer Center and with the mere mention of our frustration the ball was set in motion to try to get us seen there.  We received confirmation from the main pediatric Dr there who continued to drag her feet in responding to us (all of the nurses and administrative staff we have spoken to have been super apologetic and have been more than helpful...  as they said, they just can't force her, the Dr, to respond).  We have dates and will be traveling to Iowa the first week in May.  We continue to trust that the Lord allowed the delay for a reason, maybe we wouldn't have learned about Denver had we not been so frustrated with Iowa.  God knows our heart and needs before we do, so I trust that He already has all the details figured out, we just need to be still and know He is God.

Andrew finished his second round of chemo on Thursday.  All things considered, he weathered it well.  His tummy pain has definitely been better since he's been on chemo (he still takes pain medication around the clock, but we are able stretch out the duration between doses from every 4 hours to every 6+ hours and use a little lower dose of pain meds-- that is praise worthy for sure).  However, as of today (Tuesday) we are noticing that the pain seems to be creeping back up :-(.  Please join us in praying that the improvement in pain will hold.

Here are a couple highlights over the past few weeks that I want to make sure to share with y'all:

-We continue to be blessed by the best, most thoughtful, and generous community EVER!!!  The kids' school (staff and families) have come along side of us in ways we never imagined.  I have to admit, when I'm at work and see a call from Campbell Elementary, my heart drops because I immediately think it's the nurse calling because Andrew needs to be picked up because of his pain or he's come down with a fever or something (it's mortifying to send your kid with a weak immune system to a place with all things germy, especially when you hear about kid after kid coming down with flu, etc), but I'm more often than not surprised to find that it is just one of the precious staff or administrators calling to give me an update on steps they are taking to help make school a stress free place for Andrew, a fundraiser that a parent has suggested and they want my approval, etc.  Andrew's Army was in full effect on free dress day at school.  It was crazy amazing to see so many children and staff rocking their shirts and bracelets.  I think the biggest blessing of that day was the prayer meeting that took place before school (across the street from the school). Our youth pastor came and did a brief devotional, led us all in prayer, and then we all enjoyed donuts (with green icing of course ;-).  I know so many are praying near and far for our sweet boy, praying as if he is your child, for which we can never say enough thank you's.  I got to see a beautiful picture that morning of unity in Christ...  children and their parents came to school early, banding together to hear about the hope we have in Christ and where we can all draw our strength and courage from.  The kids were all so attentive it was awesome and then the opportunity to witness the unifying of the body of Christ in prayer, petitioning our Lord on behalf of Andrew and our family was powerful.  It is an image that will forever be etched in my mind!

-A couple weeks ago, Andrew's year round swim team, Escalate, held a swim-a-thon for Andrew.  This swim-a-thon was a phenomenal display of boys and girls sacrificing their comfort, time, and energy to support a team mate (many of the kids that swam were good friends, but there were a bunch who hardly know our family and yet still participated as if it was for their brother).  These kids literally went door to door to collecting sponsors from neighbors, etc.  On the day of the swim-a-thon the kids swam as many laps as they could in an hour. I watched as these kids pushed themselves beyond their comfort zone, many had a number of laps they were determined to make to maximize their fundraising and they pursued that goal like it was for an Olympic medal.  I was touched by, grateful for, and beyond proud of every kid who participated!  On the morning of the day of the swim-a-thon, I was feeling beat up and discouraged because Andrew's tummy pain was at an all time high, we couldn't get Iowa to respond to us, and life was just overwhelming. I told God that I knew He was there with me, I just needed to see His hand.  I asked Him to reveal Himself to me and boy did He...  prior to the swim-a-thon the most laps Andrew was able to do since he was diagnosed was TEN (for what ever reason the motion of swimming is very painful for him).  Andrew really wanted to participate in the swim-a-thon, so we just encouraged him to do what ever he was able to do and no matter what we would be so proud of him.  Can you believe that boy swam SIXTY TWO laps?!?! That, plus seeing all those kids come out in full effect for Andrew's Army, swimming their hearts out, was just the hug from God I needed.  Then to top it all off, David saw Andrew's most recent labs were posted on My Chart (the online application we use to check for any updates on labs, scans, etc) and a test they run that looks at circulating tumor cells in his blood had been cut almost in half since he started chemo!  The hug I so desperately needed from God went from a sweet embrace to a bear hug!

-Other ways that sweet friends have supported our family are going door to door or sitting at the stop sign selling cookies and water or doing extra chores around their house.  It is so cool to see kids want to do something to help someone in need, something more than just ask their parents for money.  Another super cool story of generosity is the senior class at George Bush High School.  Every year Chris Cipolla's class chooses a philanthropy to raise money for and this year they chose Andrew's Army!  I can't help but think about the fact that all the children I have mentioned (and many more) are the next generation of leaders, which gives me great hope for a future that promises to be hard and scary in so many ways.  These kiddos are learning what it means to humbly serve those in need, bear one anothers burdens, and practice empathy.  I stand in awe of these children and the families they represent!

-Lastly, David and I celebrated 14 years of marriage and 19 years of being together!  I picture how naive we were stranding at the alter 14 years ago, saying vows that seemed so simple at the time.  I couldn't even fathom at the time the ways in which God would stretch, bless, break, restore, bend, and mold our faith and marriage.  My man is my hero!

I meant to hit publish on this post last weekend, but somehow that didn't happen...  so here are a few more updates!

We celebrated Easter weekend with a whole lot of soccer, family fun complete with an Easter egg hunt and redemption center (trade in eggs for prizes, since we are trying to avoid candy with Andrew), and a mommy/daughter date with Abigail (we spent time talking (a lot), playing card games, laughing, shopping, playing soccer, eating, movie watching, and snuggling).

Mommy/daughter date night!

Andrew went to the ER today because of unusual intense pain on his left side.  After an ultrasound, chest X-ray, and labs they still don't know the cause (his pancreatic enzymes were slightly elevated, but they don't seem too concerned about it), but will be releasing him soon (hopefully).

Thursday, April 6, 2017

We have a date!

I'm so sorry for my lack of updates, we've sort of been in survival mode.  I jumped on the blog to tell you that we finally have dates to go to Denver, but are still waiting on dates for Iowa (surprise, surprise :-/ ).  Then, I realized that y'all may be scratching your head and wondering how Denver became a part of the plan. Here is the readers digest version...  the girls (Abigail and Grace) and I had the pleasure of modeling in the 2nd annual Gigi's Playhouse Sugar Land Fashion Show fundraiser.  Here is a quick couple of pictures from the fashion show.

Side note- the jumper I'm wearing seriously feels like pj's, it's so comfy and super cute, everyone needs to own one!  If you think you need one, its a Cabi piece and you can reach out to Kathryn Self to find out how to get one.  I seriously love it so much!  And my sweet friend Kathryn found me a zebra belt (made also by Cabi) that I can wear with it.  In case I haven't mentioned, the reason behind my new found love (or obsession) for all things zebra, it is the "color" that represents Neuroendocrine Tumors (Andrew's type of cancer). Exhibit A- check out my new Zebra print sneakers ;-)

Ok, getting back on track now-- at the fashion show, I spoke with a precious friend (her name is Brooke, she was in the trenches with us during Grace's journey and is now joining deep in the trenches on Andrew's journey as well) who shared with me that while she was praying for Andrew with a friend from her Bible study she learned the person she was praying with had a brother who also had a neuroendocrine tumor and sought treatment from Dr. Eric Liu in Denver (he is a surgeon that specializes in Neuroendocrine Tumors) and couldn't speak highly enough about him.  She told me that she had two important things to tell me, but we didn't get to finish our conversation at the fashion show because we were both pulled away to different conversations.  She texted me later that afternoon to tell me the two things she needed to share with me 1) she was passionate about us going to Denver (in the event that is where God was leading us) to see if they could help Andrew (I'm certain she would have just shown up on their doorstep with us, if we couldn't get an appointment to be seen by them) and 2) her family wanted to help us get there!  David and I quickly researched who this Dr. Liu guy is and we were super encouraged to see that he trained in Sweden (many of the latest/most cutting edge advancements in Neuroendocrine Tumors have been used in Europe for years, but are still not approved by the FDA here in the states, yet) and was a surgeon at Vanderbilt, before opening the Neuroendocrine clinic in Denver.  He is considered a thought leader in this type of cancer, having taught/spoke at any and all conferences related to this type of cancer, and he has people come from all around the world to see him.  David and I were feeling pretty discouraged having not heard back from Iowa yet, so we thought, maybe God is allowing Iowa to drag their feet to get us to stop knocking on the closed door and to look at the door He has opened in Denver.  At that point, it was 4:10 pm last Friday when I got Brooke's text, so David and I thought "well, what can it hurt to try", so David left a message for Dr. Liu's assistant.  Within 30 minutes he got a call back from the assistant and had a ton of medical documents in his inbox needing to be filled out by us and sent back in order for them to schedule us an appointment.  Also, before Dr. Liu's assistant even called David back she had asked Dr. Liu if he would be willing to see Andrew, since he was a child (with an adult disease) and Dr. Liu (who is an adult Dr. said "sure, I would like to see him."  What?!?!  We have begged and pleaded with Iowa to just return our phone call(s) and emails for 3 weeks and at almost 5:00 pm on a Friday evening Denver was ready and willing to help us get the ball rolling.  By Wednesday of this week we had an appointment scheduled!  Praise the Lord!  Lord willing, we will head to Denver from April 25th-27th to meet with Dr. Liu (the surgeon), an oncologist, and to get a gallium 68 PET scan.

While this second round of chemo has been a doozy for Andrew and there have been some really rough days/nights, God has been faithful reminding me of Isaiah 40:29-31, "He gives power to the faint, and to him who has no might He increases strength.  Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not grow faint."  Andrew has been in so much pain and feeling so sick that he has said "I feel so discouraged" or "it's hard not to want to give up", but it has been so awesome to see the Lord speak into Andrew's heart in ways that has brought him to tears (whether it's through His word, worship music, through the love and prayers of His people surrounding him/us spiritually and physically, etc).  Prior to Andrew's diagnosis we were talking to the kids a lot about how to listen to God and not always go to Him and do all the talking.  They would often times ask "how will we hear God speaking to us?"  We did our best to explain how He speaks to us, but it wasn't until they had experienced hearing from God for themselves that it became real to them.  I have to say, hearing your child share about how God spoke to them is one of those parenting moments I will always treasure!

PRAYER REQUEST- Will you please pray for Andrew's pain and chemo side effects?  Will you please also pray for all of the logistics surrounding our trip to Denver (safe travel, peace for the girls as they stay behind on this trip, that the Dr's would have supernatural wisdom, skill, and hope as they treat Andrew and anything else you feel led to pray for)?
***I'm not sure what's going on in downtown Denver those 3 days we are there, but many hotels are sold out and the others or are expensive.  If you or someone you know has the ability to get a discounted rate at a Marriott (or any other hotel in the area), please let us know!

There is so much more on my list of things to share with y'all, but I want to respect your time and eyeballs, so I will save it for the next post :-).

Andrew's Army- THANK YOU for every single thing you have done, are doing, and plan to do to support our family.  We seriously couldn't endure this journey without each and every one of you!  This journey is a constant David and Goliath type battle that can best be illustrated by a few of the pictures a friend took at one of Abby's soccer games this weekend.  Abby is already tiny (but fierce;-) and her team is playing up an age bracket, so that sort of explains the extreme size difference!