Sunday, February 5, 2017

Update on Andrew and everything in between...

I apologize for those not on Facebook, I have not had a second to update the blog since life took a crazy turn a week and a half ago...  Here is a readers digest version and the most recent update:

Andrew has been having tummy pain for the past 6 months or so.  It started out happening a couple times a week and are now happing twice a day and have SIGNIFICANTLY increased in intensity to the point that Andrew can't sit still and tries to deep breathe through the pain, as if he is having labor pains that last 4-5 hours.  His pediatrician sent us for some lab work, stool sample, and an ultrasound to try to figure out what was going on (after having us try Zantac, keep a food journal, do allergy testing, etc).  We went in for the ultrasound at 7:30 am and I assumed I would have him to school by 8:30 and I would be at work by 9:00.  Well, God had other plans.  I knew when they spent too much time looking at his liver that something wasn't right.  After a long wait and additional pictures, the ultrasound tech came out and said they found something concerning on the ultrasound and that the radiologist wanted us to go to our Pediatrician's office right then to discuss.  David left work and met me at the Pediatrician's office, where our amazing pediatrician shared the results from the ultrasound with us...

These results earned us a ride to the ER in the Medical Center, where they did a CT scan and we were told the Oncologist would come in and give us an official diagnosis and "stage it."  Again, God had other plans, while the Dr's searched for a primary source/tumor where the cancer originated, they didn't find it.  They were stumped as to how Andrew had so many lesions on his liver, calcification on his lymph nodes, and gallstones at his age and some how, some way, his labs looked stone cold normal.  We were told that his case was the mystery in the department.  "Nothing seems to add up or make sense."  We were admitted for a liver biopsy to better understand what were in all the lesions on his liver, in addition to other tests.  The 3 days and 2 nights in the hospital were like a roller coaster of obvious emotions, but one of the most difficult parts of the hospital stay was Abby and Andrew being separated.  All they both wanted was to be together and many tears were shed missing each other and Abby being worried about Andrew.  The second Andrew woke up from his biopsy, the first thing that came out of his mouth is "can I see Abby now?"  They have always been the best of friends, so this particular situation made the prospect of our worst fear (them being separated for good on this side of heaven) too close to home.  After the biopsy, the Dr's said they were crossing cancer out with a pencil, but what we were dealing with was still a giant mystery, as it is very uncommon in children.  Andrew then had an MRI (he laid completely still for an hour and twenty minutes like such a champ), followed by an appointment with the liver specialist.  Our liver Dr is a huge answer to prayer, as she is everything we prayed for.  At this point, Dr's remain stumped, especially as to what is causing his tummy pain.  The diagnosis they are focusing on is congenital hepatic fibrosis, which typically makes children very sick and leads to the need for a liver and/or kidney transplant.  They think that, by God's grace, Andrew's case is isolated to the liver and his liver is not showing signs of injury at this point (it is still working just fine).  Huge praises for that!  The calcification in his lymph nodes (which is often a sign of cancer) is very perplexing, but all they can think of is that may be a result of the bad pneumonia he had a few years back.  The Dr's plan to have a big meeting with a number of different specialists this Wednesday to further discuss Andrew's case and to come up with a plan as to how to monitor Andrew's liver and nodes, since this isn't something they have dealt with, they don't have a protocol as to how to how to manage it long term.  Lastly, they/we are still at a loss as to what is causing these awful tummy pains.  They don't think it is related to his liver issue, but we haven't been able to isolate what is causing it.  We are trying a medication over the weekend that we've been praying will provide a little relief (I've been begging God for just one pain free day), but so far it hasn't touched it :-(.  If we still don't see any improvement by Tuesday, we will try another medication, if that doesn't work then we will do a test on his gallbladder that I think is pretty painful.  That brings us to where we are today...  I have been heart broken watching Andrew suffer with this debilitating tummy pain (watching him wince in pain while trying to play basketball, having to pick him up from a friend's house during a sleep over because his tummy hurt so bad, etc) and holding on with a mighty strong grip to the hope that Andrew would have just one pain free day.  That day has yet to come, but God reminded me in a profound way today (smack dab in the middle of my broken and discouraged heart) that He may not be delivering us from this trial right now, but He is walking closely with us through it.  I've been reminded that like Paul (who wrote 2/3 of the New Testament), who asked God repeatedly to remove the thorn in his side to which God responded "My grace is sufficient for you, for my power is made perfect in weakness."  It is likely that this is Andrew's thorn and as long as God allows him to endure it, His grace and power will sustain him/us and make this test into a testimony.  Will you please pray for wisdom as to what's causing these terrible tummy pains and for a simple solution?  Please pray that we would keep our eyes fixed on Jesus and not our circumstances.  We have been blessed by the outpouring of love, support, and encouragement during this difficult time for which words can't adequately express our gratitude.  Thank you from the bottom of our hearts!!!

Toughest little guy I know...  takes blood tests and tons of other pokes like such a brave boy!

Andrew's new friend, "Hedwig" the owl that serves as a heating pad.  Such a sweet gift!

Andrew's biopsy time kept getting pushed back, so he was starving from fasting for 24 hours and suffering from one of his worst tummy pains ever when we finally got him to sleep just before Abby arrived at the hospital.  This is Abby snuggling her Bubba while he sleeps and counting down the minutes until she could wake him up!

They are reunited!

An hour and a half long MRI!  Again, he was amazing through it all!

If I had a dollar for every time someone walked into his hospital room and complimented his hair, we would be livin' large!  
God made this guy with an extra measure of courage!

I might be a little bit crazy, but in the thick of all of what I just described, I ran my first marathon with my dear friend and running buddy, Jill.  In what can only be described as in God's strength and for His glory, the first 25 miles weren't bad at all, but that last mile up hill with 18 mph winds at our face was a little brutal, but overall the race was a blast.

Seeing my favorite cheering squad around mile 19!

We did it!!!

Abigail also had a soccer tournament last weekend, where they made it to the finals and lost the final game 2-0.  In her second game she got a crazy hard cleat to the toe that I could hear from the sideline.  We thought it was broken, but praise the Lord it was just badly bruised and she was able to finish the tournament with a taped up toe and pain medicine.

Abigail's injured toe!

Waiting for x-ray.

Carb loading for the marathon the next day with some ding dongs (I forgot how amazing those are) while we wait for the x-ray!

This weekend was also a little busy to say the least, Abigail had an indoor soccer game on Friday night.  On Saturday, Andrew had a basketball game, Abigail had an indoor soccer game, then a basketball game, then another indoor soccer game, and we ended the night at a college basketball game where the kids got to scrimmage on the big court during half time.  Today, we had an amazing time at church, girls bible study, and now we are watching the Super Bowl as a family while snuggling on the couch.

And now... the count down continues until Grace's next ballet and tap class!  She asks every day, multiple times a day, how much longer until dance class!  This smile says it all! 

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