This post was published on CaringBridge and Facebook the morning of August 28, 2018.
In typical Taylor family style, we lived our ‘summer of fun’ to its full potential despite the peppering of Rebecca’s hospital visits and her back fracture (more on that later).
Here are a few of the many highlights:
– Rebecca turned 16 and received her driver’s license! Yes, you read that correctly. But that was not the unexpected miracle – the unexpected miracle was me finishing Rebeccca’s request for a British, rose-flavored birthday cake and lavender-rose flavored ice cream.
This required special ingredients from overseas, along with procuring all the math skills I could muster from college calculus II to convert baking measurements. It only took a mere 8 ½ hours to make this oh-so-special birthday cake that no one wanted to eat except Rebecca. People in the United States are not exactly scrambling for rose-flavored foods. As my Uncle John put it, “The icing tastes like Pond’s face cream”. I did not ask how my uncle knew this unique tidbit, but I have the sneaking suspicion he is probably right. Next birthday we are baking American style.
– Our family of 5 got the wonderful opportunity to travel to Costa Rica together for a vacation in the center of a National Park complete with monkeys and sloths.
The boys chose this location based solely on the sloths – seriously. They are sloth-obsessed (strange because they move at the exact opposite pace of a sloth).
Our only stipulation on a trip location was the distance to a major hospital. One in which Rebecca never needed – thank you Lord!
– My siblings and I surprising my father with a 70th birthday party at his lake cabin.
That in itself, was an unexpected miracle as we had to convince my dad to leave the cabin for a day in order to play laser-tag with his grandsons while we set up for the party. My father is not exactly a laser-tag type of guy. Even so, he remained blissfully ignorant to our secret ploy…
– The ever-successful PancreasFest conference and the fruit it is bearing.
– And, of course, the last-minute ‘real’ beach vacation the kids and I experienced with Gail.
It is hard to believe we had time for anything medical in between all that fun? But alas, while some weeks were filled with delight, some were filled with 30-plus hours of outpatient doctor’s appointments, labs, tests, MRI’s, bone scans, and multi-team conferences. And other weeks were filled with inpatient hospital stays complete with more transfusions to stabilize blood levels and IV antibiotics necessary to fight the continual MRSA infections Rebecca battled until end of June.
Please hug the parent of a chronically ill child next time you see them.
And today we face another hurdle as Rebecca undergoes a procedure to remove staples puncturing her intestines. Some of Rebecca’s staples (intended to bind her inner-wounds during transplant) have now migrated into her intestines causing pain every time she eats. This was a problem we discovered last Fall but were unable to locate a surgeon willing to operate on Rebecca’s unique post-transplant anatomy. Rebecca had numerous tear-filled appointments listening to doctors say, “I am sorry, but this case is too complicated for me to feel comfortable with.”
And I understood.
This case is too complicated for any human. But it is not too complicated for God, the God who created my child’s inmost being.
And that very same God found us a vessel who came from Dallas to take on Rebecca’s case. This doctor has experience removing staples endoscopically on post-transplant adults and he will do the same procedure with Rebecca this afternoon in San Antonio at University Hospital. While we realize this option A is only a ‘tip of the iceberg’ fix to Rebecca’s pain factor, any ounce of relief will be heartily welcomed.
Option B addresses the full abdominal cavity pain factor. But surgeons would have to cut back into Rebecca’s stomach in order to remove her growing scar tissue along with her 40-plus embedded staples. A surgery that is fraught with risk in Rebecca’s particular state, not to mention a 6-month to one-year recovery.
For now, we choose option A.
Please pray for our option A. Thank you your steadfastness. Thank you for your love.
We love you right back,